Jarapla Srinivas Nayak, Tittu Thomas James, Shubham Menaria, Pradnya Dhargave

NIMHANS Physiotherapy Centre, Bangalore, India

Introduction: Palliative care and rehabilitation, both focus on the concept of helping people to maximize their potential and live to the fullest in their given circumstances. Physiotherapy is a healthcare profession concerned with human function and movement, thereby maximizing quality of life through assessment, symptom management, function and rehabilitation, education, communication and psychological aspects of care.

Aim: This cross-sectional survey tries to analyze the knowledge levels of palliative care among the physiotherapy healthcare professionals in India.

Method: Palliative care Knowledge questionnaire - Basic (PCKQ-B) was sent to clinical physiotherapists and their responses were collected and documented. The data collected was subjected to analysis and interpreted accordingly.

Results: A total of 58 physiotherapists participated in the study, with a mean age of 27.53±5.77 years, and mean experience of 3.84±5.35 years. Majority of the participants (56.9%) had no experience in palliative care, and 24.1% of them had treated less than 10 terminally ill patients during their carrier. Although 81% of them recognize the need of palliative care, only 15.5% of them have participated in any educational activities related to the same. The study also found lack of knowledge among physiotherapists analysed using PCKQ-B questionnaire.

Conclusion: Although physiotherapists deals with enhancing function and rehabilitation of patients, lacunae exist in the knowledge and practical application of palliative care in their respective domain. This study identified the need to implement measures to raise awareness and improve practical skills among physiotherapists on palliative care are warranted.

Arkanil Gain, Sushma Bhatnagar, Brajesh Kumar Ratre,

Hari Sajiraju

AIIMS Delhi

Introduction: Cancer is one of the leading causes of death in various countries despite the advancement and progress in cancer treatment and diagnosis. During the last 25 years, India has emerged as a fast-growing economy with changes in lifestyle-related behaviour partially responsible for the increasing cancer burden and is among top three killers among adults in both rural and urban India. Cancer incidence rates, while still lower compared with many western countries have been changing over recent decades. One of the main reasons for this changing trend is delay in diagnosis or initiation of treatment at advanced stage. Prolonged duration of diagnosis and delay in start of treatment increases the proportion of advanced stages in cancer patients and has an impact on poor prognosis and quality of life. The reason behind the progression of early- stage disease to the end stage has been associated with patient’s late presentation to the OPD mostly rather than the failure of response to curative treatment.

Aim: It’s a prospective observational study which aims to find out factors responsible for late presentation of cancer patients to hospital.

Method: 100 Patients coming to palliative medicine out-patient department and our palliative care unit with advanced malignancy has been taken for the study and they have been asked in detail about the cause of late presentation and the first symptom they came across to a tertiary care hospital with the help of a self-structured proforma.

Results: The mean age of presentation was 49.90 years (range 19 years-78 years). The number of male patients was 54 while females were 46. The duration of symptoms ranged from 1 month to 3 years.55 patients reached tertiary care hospital within 6 months of noticing the first symptom, 45 people made delay of more than 6 months. Among the 100 patients 49 patients landed up late in hospital because of ignorance about their symptoms and warning signs, 27 patients apprehended the treatment cost which prevented them from starting the diagnostic and therapeutic procedures. 7 patients didn’t report due to the fear of getting diagnosed with cancer and the social stigma associated with it. 7 patients were found to be the victim of apathy of family members towards them, which led to delay in visiting the hospital. 2 patients with breast cancer didn’t want to visit any hospital due to the fear of getting operated on. apart from these there were associated causes like difficulty in transportation, liabilities towards family, hectic schedule. Another reason of delayed presentation was seen in 2 patients which was disappointing enough. They got treated wrongly by local quacks and they roamed around taking “Desi” medicines without any proper diagnosis. Among these patients pain was the first symptom to get noticed in 49 of them. Other predominant symptoms were mouth ulcers in oral malignancies, painless lump in breast cancer, difficulty in swallowing in esophageal malignancy. Drastic weight loss associated with or without pain and loss of appetite have been characteristic primary symptoms of malignancy of gall bladder.

Conclusion: Factors causing delayed presentation are both patient and system related. It is a need of hour to educate the common people regarding the early signs and symptoms of cancer. At the same time, we can propose several ways to strengthen our referral system at grass root level of health care delivery system to avoid secondary delays that adversely affect the treatment outcome. An upgradation and incorporation of modification of the existing oncology facilities in the public sector can achieve this target efficiently. Above all we need to spread awareness in the community about the warning signs of cancer and streamline their journey along the treatment course through assurance and proper referral protocols.

Sarita Singh¹, Manish Kr Singh², Ajay Chaudhary¹,

Saurabh Singh³

¹Professor, Department of anesthesiology and critical care, KGMU Lucknow,

²Associate professor, Department of anesthesiology and critical care, KGMU Lucknow,

³Senior resident. Department of anesthesiology and critical care, KGMU Lucknow

Introduction: Oral cancer is one of the most common cancers in India. Patients with tumors in the oral cavity have a lower QOL, as well as worse pain, compared to other sites.

Aim: To know the role of intervention on pain , quality of life and consumption of Morphine in oral cancer patients.

Method: Ten adult patients of both gender with inoperable carcinoma lateral border of tongue having pain intractable to conservative management given radiofrequency ablation of gasserian ganglion block, and numeric rating scale (NRS) and consumption of morphine was recorded at regular intervals till the 90 days after intervention done.

Result: 10 patients were included in the study and followed up till 90 days post procedure for pain relief using NRS scale and also assessed for symptomatic relief. Day 1 ,day 30 ,day 60 and day 90 post procedure pain relief was found to be 92 %,72 %, 67.5 % ,63.3 % respectively.

Conclusion: Radiofrequency ablation of gasserian ganglion in patient with carcinoma lateral border of tongue is a palliative intervention that provides satisfactory symptomatic relief.

Bhavana Issar

Indian Association of Palliative Care

Over the last few years there has been a significant appreciation and adoption of Palliative care, especially during the Covid pandemic which precipitated the need for a holistic approach towards the treatment, the patient, their families, and the healthcare workers. Although there is extensive and admirable work being done to educate the medical fraternity and public in Palliative care, there is a long distance that needs to be covered. Due to the pandemic, there is also an increase in adoption and use of information technology and tools designed using digital technology. It is imperative to explore technology-led creative solutions that enable wider reach, faster learning and easy reference for latest concepts. These tools and systems would empower and educate the families for better care and equip healthcare workers with the latest information and methodologies. An integrated platform for seamless access across all stakeholders for patient-centred care.

This solution will have four key elements: a. All the stakeholders would have similar view of the history, updates and treatment plan. b. An on-demand learning so that the caregivers, the healthcare workers can have access to multimedia based and multi-lingual learning materials in order to ensure high quality patient adherence. A voice-assisted solution would enable people with low literacy to navigate the system. c. Artificial Intelligence and Machine-based Learning to incorporate socio-economic factors. d. Behavioural nudges and habit-forming trackers to support mental health

Bhavana Issar

Indian Association of Palliative Care

There is an increasing need for systems understanding and leadership development at multiple levels within the dynamic and demanding healthcare system - intrapersonal (individual leadership), inter-personal for teams and inter systems. Gestalt is a holistic approach that was initially developed by Fritz Perls for therapy and has been applied in many fields including Organization development and change management. It is imperative that Palliative Care is integrated into the medical and healthcare systems in a way that it is adopted by all stakeholders for providing universal and sustainable care to the patients, families, and healthcare professionals. Given historical baggage, Palliative Care is misconstrued as end-of-life care, even by the medical fraternity and a sign of “giving up”. It is only recently that palliative care has extended its scope beyond cancer, and yet there is a lot that needs to be done in terms of creating awareness, sensitivity and adoption by the medical fraternity and the public. Gestalt provides the framework and the tools for equipping leaders of the healthcare system in understanding the people and process dynamics within the system, gauge the health of the system and design meaningful interventions that enable transformation. This will require building an appreciation and understanding of the Gestalt framework and using experiential learning methods to build leadership capability among key influencers and leaders. The leaders and influencers will subsequently be able to partner with experts in order to have a multidimensional systemic view and design interventions to integrate palliative care in varied socio-economic settings.

S Y Aishwarya, Yamini B K, Nalini A*, Nikhil Ratna**, Sanjeev Jain***

Department of Speech Pathology and Audiology, NIMHANS, Bengaluru, syaishwarya@gmail.com, 7353364908,

Department of Speech Pathology and Audiology, NIMHANS, Bengaluru, yaminihk@gmail.com, 9980229280,

*Department of Neurology, NIMHANS, Bengaluru, atchayaramnalini@ yahoo.co.in, 9632505634,

**Huntingtons disease Society of India, mybrainjourney@gmail.com, 8971294034,

***Consultant Psychiatrist, Bengaluru, Sjain.nimhans@gmail.com, 9886126047

Introduction: Speech, a significant mode of human communication, gets affected in neurodegenerative conditions such as Amyotrophic Lateral Sclerosis(ALS) and Huntington’s disease(HD), and progressively worsens. In view of this deterioration, persons with HD and ALS over time, move to using Alternative and Augmentative Communication, to improve the quality of life (Karam et al., 2014 and Grimstvedt et al., 2021).

Aim: The aim of the present retrospective study was to delineate the status of dysarthria in ALS and HD over a period of time.

Methods: Dysarthria in a 25year female with spinal onset ALS(Duration:10 months limb and 4 months speech impairment at baseline) and a 24year male with HD(3year duration at baseline,on regular medication) was studied retrospectively. Oral motor examination(OME) and respiratory-phonatory co-ordination(MPD, s/z ratio) was evaluated for both the participants. Rating was done on speech domain of ALSFRS-R for pALS and dysarthria related subdomains under Motor assessment in UHDRS (Huntington study group., 1996) for pHD. The results were analysed and compared between time-lines i.e. Baseline and four follow-up evaluations over a year for the pALS and a baseline and one follow-up evaluation after two years for the pHD.

Results: In pALS, a deterioration in the dysarthria characteristics was evident suggesting the relentless progressive nature of the disease. The improvement in certain parameters and deterioration in certain might be due to the heterogeneous presentation in pHD (Shah et al., 2021).

Conclusion: The present study highlights the change in dysarthria characteristics. It alerts the clinician to evolve a palliative dysarthria care in these neurodegenerative conditions.

References

1. Cedarbaum, J. M., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., & Nakanishi, A. (1999). The ALSFRS-R: A revised ALS functional rating scale that incorporates assessments of respiratory function. Journal of the Neurological Sciences, 169(1-2), 13-21. https://doi.org/10.1016/s0022-510x(99)00210-5

2. Grimstvedt, T. N., Miller, J. U., Van Walsem, M. R., & Feragen, K. J. (2021). Speech and language difficulties in Huntington’s disease: A qualitative study of patients’ and professional caregivers’ experiences. International Journal of Language & Communication Disorders, 56(2), 330-345. https://doi.org/10.1111/1460-6984.12604

3. Karam, C. Y., Paganoni, S., Joyce, N., Carter, G. T., & Bedlack, R. (2014). Palliative care issues in amyotrophic lateral sclerosis. American Journal of Hospice and Palliative Medicine®, 33(1), 84-92. https://doi.org/10.1177/1049909114548719

4. Shah, R., Lee, S. C., Strasser, R. B., & Grossman, C. (2021). An Australian neuro-palliative perspective on Huntington’s disease: A case report. BMC Palliative Care, 20(1). https://doi.org/10.1186/s12904-021-00744-z

5. Unified Huntington’s disease rating scale: Reliability and consistency. (1996). Movement Disorders, 11(2), 136-142. https://doi.org/10.1002/mds.870110204

Mousami Kirtania

Ph.D. Scholar, School of Medical Sciences, University of Hyderabad

Introduction: Palliative Care has been putting down its roots for 4 decades. In the first decade, it emerged through capacity building, knowledge dissemination, community networking, and state policies and guidelines for opioid availability. The outset was led by Dr. Lusito D’Souza, a surgical oncologist who developed the first hospice in Mumbai, called Shanti Avedna in 1986. This was followed by several foundations like Sevagram Trust in Kerala, and Karunashraya Trust in Bangalore. The second and third decades brought up palliative medicine as a specialty. It involved training programs, both distant and in-person with the help of international collaborations, community-based palliative care, revision of the Narcotic Drugs and Psychotropic Substances (NDPS) Act in 2014, and including an element of palliative care in the National Health Policy (NHP), 2017. Till 2019, palliative care and end-of-life (EoL) training were part of all medical undergraduate schools and residencies. Pallium India, a registered charitable trust well-known for pain relief was founded by Dr. M. R. Rajagopal in 2003.

Aim: This study aims to present an overview of the past, present, and future of Palliative Care in India.

Methods: Conducting a literature review using the databases such as Scopus, Web of Science, and PubMed.

Results: The literature review identified that in the last decade, it is time that palliative medicine develops its own subspeciality vertical fields to emerge as more accessible and chosen care by the chronically ill and those at the end of life. New models can be developed or developed models in foreign can be revised based on the Indian context.

Conclusion: It is necessary that each state has its own community-based volunteer team for palliative care to make it reach every corner of the community. It is also important that palliative care education is disseminated among all the para-medical staff which should include training on uncomfortable conversations, referrals, and emotions.

Jyoti Inamdar, Amar Nirmale

King George V Memorial, Anand Niketan, Mumbai, India

Introduction: Palliative care is an interdisciplinary approach aimed at optimizing quality of life and mitigating suffering among people with life threatening diseases. Social workers are integral members of the interdisciplinary palliative care team, addressing psychological and social needs to support patients and their families. With Specialized training, social workers play a critical role on the team—communicating with patients and families.

Aim: The Primary aim to the study was to identify the knowledge, attitudes and practices of Master of Social work students about palliative Care at Social work College, Mumbai University. And thereby assess effectiveness of the training in improving their knowledge, attitude and practices on Palliative Care.

Methodology: Structured Questioner with simple Random Technique was used as data collection tool Pre Test was conducted before 7 days of training while Posttest after 21 days. In 21 days they were suggested to take one case study where they can apply their knowledge, attitude and practices. Topics on Basics of palliative Care, Psychological, Social, and Spiritual was covered by the trainers.

Result: Knowledge of Palliative Care was 32% in Pretest while in Posttest it increased to 63%, attitude in pretest was 55% which increased up to 64%, and Practice was 44% which increased to 62%.

Conclusion: The findings revealed that knowledge, attitude and Practices of Social work students were increased after Training. It concludes that training and application of training in practice will facilitate social work students.

Malti V Bhambure¹, Trupti S Yadav²

¹Senior Resident, Department of Oncology, Krishna College of Physiotherapy, Krishna institute of Medical Sciences Deemed to be University, Karad.

Email ID: maltibhambure17@gmail.com Contact Number: 9657414408 ²Associate Professor, HOD, Department of Oncologic Physiotherapy, Krishna College of Physiotherapy, Krishna institute of Medical Sciences Deemed to be University, Karad.

Email ID: drtruptiwarude@gmail.com Contact Number: 9028466795

Introduction: Breast cancer is most prevalent cancer among women for which therapeutic procedure modified radical mastectomy (MRM) is frequently performed on patients. Post-surgery these patients are prone to have incision or suture site pain that will interfer chest expansion.

Aim: To determine the effectiveness of thoracic mobility exercises along with breath stacking technique on chest expansion in breast cancer survivors

Methods: Total of 46 participants eligible as per inclusion criteria were randomly assigned into 2 groups. During the study period, Group A, Experimental group (n=23) received thoracic mobility and breath stacking technique and Group Control group (n=23) received Thoracic mobility exercises alone. Pre and Post chest expansion were determined by using a tape measure at axillary and xiphisternum level.

Results: Chest circumference score at axillary and xiphisternum level significantly improved in the intervention group after 4 weeks of Rehabilitation program (p<0.05)

Conclusion: The present study concludes that thoracic mobility exercises along with breath stacking technique is beneficial for improving chest expansion in post-surgery breast cancer patients.

Snowin Delphy Clara J, Subathra Muthukumaran,

Aneka Paul, Stelle Mathew

Golden Butterflies Children’s Palliative Care Foundation

Introduction: Child-patients with life-limiting or life-threatening conditions seldom have opportunities to enjoy their childhood, nor do their caregivers have respite from grueling treatment schedules. Adi Dhool’ was organized as a first-of-its-kind fun fete for child-patients, their siblings and caregivers, featuring exquisitely curated stalls for games, books, food, art activities, entertainment, dance, and more. The event was held on October 2^nd 2022, supported by 150+ corporate and student volunteers.

Aim: To understand if Adi Dhool’ achieved its stated objective, and learn attendees’ suggestions for improvement of the next event.

Methods: Feedback was sought on 5 questions from 10 child-patient and caregiver pairs (10% attendees of Adi Dhool’).

Result: Caregiver respondents were aged 30-45 years (8 Females, 2 Males), while child-patients were aged 7-14 years (4 Females, 6 Males). Children were undergoing treatment at Oncology, Surgery, Nephrology, and Hematology departments. Three respondents each appreciated the ^500 coupons each child was given, which allowed them to make purchases of their choice. Majority felt there was insufficient time for dancing and games, and wished for more kids’ games and toys. Six child-patients felt that such a day where they could enjoy themselves outside hospitals, away from medications and injections, was what they longed for, while 1 was grateful for the respite for their mother. An overwhelming 10 child-patients wanted to attend Adi Dhool’ again next year, pain-free, with family and friends.

Conclusion: Avenues like ‘Adi Dhool’ are an effective way of bringing “normalcy” and respite in the lives of sick children and their families.

Bharathi¹, Shankar Prasad N², Ravindra Prabhu A²,

Naveen Salins³, Pankaj Singhai³, Anuja Damani³

¹Manipal College of Health Profession, MAHE, Manipal,

²Department of Nephrology, Kasturba Medical College, MAHE, Manipal, ³Department of Palliative Medical and Supportive Care, Kasturba Medical College, MAHE, Manipal

Introduction: End-stage kidney disease (ESKD) is a life-limiting illness that leads to significant health-related suffering for the patients and their caregivers. Moreover, disease-directed options like dialysis and renal transplant might not be universally accessible. Inadequate assessment and management of symptoms often lead to diminished quality of life. For evaluating symptoms and their associated distress, various tools have been identified. However, these are not available for the native Kannada-speaking population for assessing ESKD symptom burden.

Aim: Study aim was determine the reliability and validity of the Edmonton Symptom Assessment System Revised Renal (ESAS-r: Renal) in Kannadaspeaking ESKD patients.

Methodology: ESAS-r: Renal English version was translated into Kannada using the forward and backward method. The translated version was endorsed by Nephrology, Palliative care, Dialysis technology and Nursing experts. As a pilot study, 12 ESKD patients evaluated the content of the questionnaires for appropriateness and relevance. The ESAS-r: Renal Kannada version was validated by administering this tool to 45 patients twice a fortnight.

Result: The translated ESAS-r: Renal Kannada version questionnaire had an acceptable face and content validity. Experts’ opinion was assessed by content validity ratio (CVR), and the value of CVR of ESAS-r: Renal Kannada version was-”1”-. Internal consistency of the tool was assessed among Kannada-speaking ESKD patients; its Cronbach’s α was 0.785, and test-retest validity was 0.896.

Conclusion: The validated Kannada version of ESAS-r: Renal was reliable and valid for assessing symptom burden in ESKD patients.

Karishma Pavaskar, Majusha Warrier

Christ (Deemed to be University), Bangalore Introduction: Globally and in India, cancer has been one of the leading causes of mortality and disability. Cancer impacts the physical and mental health of patients and also affects the cancer caregivers (family). Previous studies focused on different psychosocial interventions on caregivers however there was limited research that used expressive therapies (ET) as an intervention to measure their quality of life. In recent times, expressive therapies have proved to be therapeutic distress but little has been found in cancer care. Therefore, this study aims at understanding the effectiveness of ET on the quality of life of informal cancer caregivers by conducting a pilot study of six online sessions of expressive therapies.

Aim: The primary aim of the study was to understand the feasibility and effectiveness of expressive therapies on quality of life of informal cancer caregivers by conducting a pilot study.

Methods: A quasi-experimental single group pre-post-test design was used. A total of four informal cancer caregivers participated in the study that extended for three days in an online setting. Each session was 60-70 minutes exercising ET techniques. The Caregiver Quality of Life Index-Cancer (CQOLC) scale was used to measure the quality of life of cancer caregivers before and after the intervention. Paired sample t-test was used to analyse the obtained data.

Results: The results indicated significant impact on their quality of life specifically in their emotional, financial, and spiritual domains. The results were found to be statistically insignificant and requires further structuring of sessions and logistics. Through this study it was noted that there is a need to focus on the concerns of the cancer caregivers as their quality of life is also impacted.

Conclusion: This study focuses on understanding the effect of ET on quality of life of informal cancer caregivers. There have been studies that uses traditional approaches like CBT, art therapy however expressive therapies as a whole have limited studies. This study though indicated insignificant results; with further modifications it can be implemented in structured manner as there is a need for such alternative therapies identified in this population.

Prema L Meti, Geetanjali T, Pankaj Punetha

Sri Satya Sai Superspeciality Hospital, Bangalore

Palliative medicine Intensive care Communication

Introduction: High quality palliative medicine depends upon good communication which can enhance quality of care while also improving patient and family satisfaction. Good communication fosters decision making by improving the likelihood that patients and families choices remain consistent with individual stated goals, values and preferences. Although symptom management is important communication is perhaps the most important and powerful skill. Good communication has several components. Eliciting and understanding patients perspective, understanding the patients psychosocial context, achieving a shared understanding of the problem and it’s appropriate treatment in the context of patients preferences and values,

Aim: To show how good communication and detailed communication with patient and family members has a good recovery, short hospital and icu stay. Good communication creates a sense of trust and security for both the patient and the family. Good communication can make all the difference when it comes to patients and family members feeling supported trusting judgement and engaging with doctors advice.

Methods: We had 2 post neuro surgery patients in past 2 months who were on ventilator for long time who recovered and went home happily.

Patient 1: 22 year male patient who admitted with diagnosis of basilar invagination with atlanto axial dislocation posted for occipito cervical fusion. Patient presented with progressive spastic quadriparesis after a fall 8 years ago. Preop, induction and intra op was stable. Extubated in OR. Post op recovery uneventful. After 15 days of discharge patient presented to casualty with dyspnoea, for which evaluation was done patient was in type 2 respiratory acidosis. Patient required long term mechanical ventilation was on NG feeds for long time. Extensive rehabilitative care was provided and gradually patient was weaned from ventilator and decannulated.

Patient 2: 43 year old female admitted with diagnosis of right sided infratentorial meningioma for craniotomy and excision. Preop findings k/c/o HTN on treatment, obese patient. Premedication was adequate. Induction was uneventful. Intraop stable haemodynamics and uneventful. Post op patient developed left lung collapse for which she was intubated. in view of prolonged ventilation patient was planned for surgical tracheostomy. Patient CXR improved patient weaned from ventilator and was shifted to ward. After 5 days patient again shifted to icu with difficulty in breathing with TT tube in situ. Patient was evaluated CXR showed lung collapse and was on mechanical ventilator for few days. After one and half month later patient was improved, weaned from ventilator and discharged from hospital

Result: Like ways many patients who underwent major surgery and has had a prolonged ICU stay who had good recovery or bad outcome communication and every day strategies was explained to family members. Communication with family members was very important here. Family members were conselled and discussed about need of ventilator and prolonged hospital stay at each and every step.

Conclusion: Benefits of good communication are significant , the reality can be difficult to achieve amidst demands of daily clinical practise. Good communication with family members not only improve psychological well being of patient and family members it also reduces length of icu stay. Good communication with patients and family members reduces anxiety, helps improve decision making, and specially during icu stay ,clinician statements associated with increased family satisfaction in the ICU setting include assurances that the patient will not be abandoned and will not suffer and expressions of support of family regardless of their nature.

Jay Goswami

Sukoon Nilaya Palliative Care Centre

Introduction: Following Head injury, Stroke, Dementia unawareness of neurological deficits is found in relation to the physical, emotional, & cognitive components. Lack of awareness of deficits hinders the rehabilitation process as the client may engage in therapeutic activities far beyond their abilities, resulting in poor safety judgment.

Aim: To investigate the effectiveness of the CO-OP approach in improving self-awareness & ADL performance in patients with impairments after stroke.

Methods: This study was done to find the effectiveness of the CO-OP approach in improving self-awareness & ADL performance in patients with stroke. A 32-year-old male with multifocal acute infarcts with quadriparesis, CVT underwent occupational therapy rehabilitation wherein CO-OP approach was used as an interventional strategy over a period of 2 months. MMSE & MOCA were used to assess for cognition, SADI & significant other checklists to screen for self-awareness, FIM scale for ADL assessment, and COPM was used for goal setting and to measure performance & satisfaction levels.

Results: All the parameters increased significantly after the CO-OP intervention. The FIM score of the ADL assessment increased from 110/210 to 160/210. The COPM scores improved from performance score 0.6, satisfaction score 0.6 to performance score 4.6 & satisfaction score 4.4 with change in performance and satisfaction scores 4 & 3.8 respectively. The SADI showed an increase in self-awareness of deficits.

Conclusion: Hence, the CO-OP approach improved the ADL & occupational performance in patients with stroke.

Ms. Manisha Mary Marshal, Dr. Aditi Santosh,

Sis. Raima Jose, Dr. Sandhya P M

St. John’s Medical College Hospital, Bangalore mmanishamary@gmail.com, 9945614497

Department of Pain and Palliative Medicine, Oncology Block, SJMCH, 560034

Introduction: Research conducted in various other countries have proven that psychosocial issues including depression, anxiety, and lower social support are common in people with Chronic Kidney Disease (CKD). Therefore, the need to study this issue in India remains a necessity.

Aim: To study the psychosocial wellbeing of patients undergoing hemodialysis at a tertiary hospital in India.

Methods: A cross-sectional survey using Integrated Palliative Outcome (IPOS) - Renal 2.0 (staff version) is being used in 250 CKD patients undergoing hemodialysis.

Results: The outcome analysis of this study will be listed in terms of the severity and impact on patients’ day to day lives. It will be shared during the final presentation.

Conclusion: Currently, there is not enough data regarding the prevalence of psychosocial morbidity in CKD patients undergoing hemodialysis in the Indian population. Therefore, the study is expected to add value to the existing data.

Dr Vidya N, Akkamahadevi P, Sushantha

Clear Medi Radient Hospital, Mysore

Introduction: Health care professionals are one of the main stake holders in providing palliative care and oral morphine is an essential drug for providing pain relief. An attempt to understand their Knowledge, Attitude & Practice (KAP) in prescribing oral morphine is made.

Aim: To understand the barriers health care professionals face in prescribing oral morphine.

Methods: A google form with 16 questionnaires was circulated through social media. The responses were collected in excel sheet. Data was analyzed using SPSS software.

Results: 124 individuals participated; Of the 124 practitioners who participated, 48.4% had received training. The barriers to prescribe oral morphine were, inadequate training (50%), fear of misuse (49.2%), nonavailability of morphine(40.3%), inadequate patient awareness (35.5%), compliance to prescription(28.2%) and stringent documentation (25%).

Conclusions: This Cohort represents a small part of a large group practicing today, acknowledging inadequate training of doctors, opioid phobia- misuse/addiction and availability as the major barriers for health care professionals for prescribing oral morphine and not legal and procedural barriers. Numerous institutions around the country are working on training the health care professionals deliberately. Moreover since 2019, modern pain management has been included in the UG curriculum. There is a huge need of media advocacy to break the stigma around palliative care. Availability of morphine is substantially low in India; much work is being done to improve the access. Health care professionals’ aim is to alleviate pain by circumventing the barriers.

H M Iqbal Bahar, Kasingliu Dahengnmei

Cacher Cancer Hospital and Research Center, India

Introduction:Palliative care is an integral component of the comprehensive care for patients in a cancer hospital. The Pain and Palliative Care unit of the hospital was started in 2009 with a generous grant from the Indo-American Cancer Association. This article summarizes the major obstacles, accomplishments, of the palliative care service during the past decade and its future needs.

Methods: All the data from the annual report, OPD and indoor register of the palliative care unit of the hospital, were collected and a summary of the major obstacles, accomplishments of the palliative care service during the past decade from 2009 to 2021 were obtained.

Results: Awareness and acceptance of palliative care among the doctors’ community, morphine availability, lack of financial, human resource trained in palliative care were the major hurdles. There were several clinical accomplishments, increase use of palliative services, development of pain policy, quality improvement projects, advocacy and awareness activities all of which will be shown at the time of presentation.

Conclusion: Over the past decade we have observed better utilization of palliative care service in our region. We have recognized many shortcomings in our service and we need efforts to improve them for providing comprehensive and holistic care to cancer patients.

Biji MS, Praveen Kumar Shenoy, Satheesan B,

Sheeja Nellikka, Sunil Kumar MM, Carin Anderson

Department of Cancer Palliative Medicine, Malabar Cancer Center, Kerala

Introduction: Quality of Health care is the degree to which health services provided to individuals increase the likelihood of desired health outcomes. In order to realize the benefits of quality health care, health services must be provided in timely, equitable, integrated and in an efficient manner.

Aim: To reduce the waiting time of patients coming for consultation in Palliative care outpatient department (PC OPD) from other oncology OPDs.

Methods: This was a prospective exercise done as part of EQuIP India QI program in 2019 at Malabar Cancer Center between December 2019 to November 2020. A3 methodology based problem-solving approach was utilized with step by step focus on the problem statement, background, target state (SMART goal), current state identifying the target/actual gap analysis, key drivers, interventions/counter measures, and sustain plan.

Results: After identifying our problem statement, we charted out the process map followed by ‘Waste walk’ to identify redundant steps in the process map. Fish bone analysis was done to identify factors contributing to our problem. Pareto analysis was undertaken to assess the competing problems and impact of fixing them. From this, key drivers followed by interventions to address each of them were derived. These were implemented and we were able to reduce waiting time in Palliative care outpatient department from baseline of 35 minutes to around 20 minutes.

Conclusions: The structured A3 methodology helped us in reducing waiting time of patients coming to PC OPD for consultation.

Meheli Chakraborty, Dr Aitihya Chakraborty,

Santanu Chakraborty, Tania Nandi, Ruma Abedona Hospice

Broad Category- Oncology Palliative Medicine Subcategory- Symptom Management other than Pain Material previously published or presented in part: NO

mehelichak@gmail.com (+91 9874357939) c.aitihya19@gmail.com (+91 9477837590) santachak@gmail.com (+91 9830088821) tanianandi26@gmail.com (+919038871279) rumahospice@gmail.com www.rumahospice.co.in (+91 9830088821)

Introduction: Amidst warm and humid climate in tropical regions, low socio-economic status, lack of knowledge and poor living conditions, aggressive malignant wounds predispose the debilitated patients to maggots’ infestation (myiasis) in India.

Aim: This study underlines the importance of regularly monitoring stoma sites and document the effectiveness of systemic Ivermectin, Albendazole and Clindamycin (Triple Therapy) in alleviating the burden of maggots’ infestations.

Methods: A 66-year-old male patient with advanced Carcinoma Larynx, who had previously undergone tracheostomy, was received by us at Ruma Abedona Hospice. He presented with foul-smelling, blood-stained discharge around the tracheostomy site, with maggots observed creeping all around the tracheostomy tube. We considered application of ether for removal of the maggots. The patient was also administered with T. Morphine (10mg), T. Metronidazole (400mg), T. Ivermectin (12mg), T. Albendazole (400mg) and T. Clindamycin (300mg) as per standard protocol, along with maintaining tracheostomy tube care and laxative protocol.

Results: In total, 273 maggots were removed over the span of 7 days the patient stayed at our Hospice. In a weeks’ time, we found the patient free of maggots’ infestation and had initiated eating after a while.

Conclusion: A combination of careful application of ether and Systemic Triple Therapy facilitates the early removal of maggots’ and provides necessary relief from distressing associated symptoms. Here, we underline the importance of monitoring stoma sites, raise awareness for daily assessment of maggots’ and its prevention to the patients’ and family members, delivered mostly via health talks by the nurses’ during the dressing hours.

Dr. Malathi G Nayak¹, Dr. Radhika R Pai², Dr. Naveen S Salins,³ Dr. Baby S Nayak⁴

¹Associate Professor, Department of Community Health Nursing, Manipal College of Nursing, MAHE, Manipal, India. Email: malathi.nayak@manipal.edu,

²Assistant Professor - Senior Scale, Department of Fundamental of Nursing, Manipal College of Nursing, MAHE, Manipal. Email: radhika.r@manipal.edu,

³Professor and Head, Department of Palliative Medicine and Supportive Care, Coordinator, Manipal Comprehensive Cancer Care Centre Kasturba Medical College, Manipal Academy of Higher Education Manipal. Email: naveen.salins@manipal.edu,

⁴Professor & Head, Department of Child Health Nursing, Manipal College of Nursing, MAHE, Manipal. Email: baby.s@manipal.edu

Conference: 30^th International Conference of Indian Association of Palliative Care (IAPCON 2023).

Date: February 9-12, 2023.

Broad Categories: TRACK 9: Palliative Care Education Subcategories: Education, Training and Supervision

Introduction:Palliative care (PC) is an important part of the current health care system. Access to PC is important for every individual patient and their family member. The ASHA workers are the grass root level workers who work closely with the rural population. It is imperative to enhance their capacity to deliver effective PC services as they are the first line of contact.

Aim: To assess knowledge and attitude on PC among ASHA workers using a structured scale.

Methods: A quasi experimental study was conducted among ASHA workers of Udupi district. Data were collected by using validated knowledge and attitude questionnaire. One-day training program on palliative care was given among 984 Accredited Social Health Activist (ASHA) workers. Pre & post-test was conducted to assess knowledge and attitude on palliative care.

Results: A total of 984 ASHA workers were included in the study. The mean age of the respondents was 43.46±7.105. 44.2% of them had 11 to 15 years of experience as an ASHA worker. The mean post-test knowledge score was increased (14.94) from pre-test score (12.03). The mean post- test attitude score increased (38.70) from the mean pre- test attitude score (21.37). Training programme was found to be effective in improving the knowledge and attitude (t =-21.685, p<0.001).

Conclusions: It is important to train ASHA workers on PC to provide efficient care in the community for needy people.

Ethical approval and funding acknowledgements: • This study was conducted after obtaining the ethical permission from Kasturba Medical College/ Kasturba Hospital IEC clearance (IEC 164/2020) and registered in Clinical Trial Registry of India CTRI/2020/04/024792. • This study is funded by ICMR-ICRC (RFC No.NCD/NTF/6/2019-20 dated 18.9.2019 (Ongoing project).

Raghvendra B K

K C General Hospital, India

Introduction: Dysphagia is a medical term used to describe a swallowing dysfunction. It involves any one of the 3 stages of swallowing: oral, pharyngeal, esophageal. Dysphagia is delay in or misdirection of a fluid or solid bolus as it moves from mouth to the stomach.

Aim: To objectively assess dysphagia in patients following prophylactic swallowing exercise during concurrent chemo-radiation for head and neck cancer.

Materials/Methods: Patients receiving chemotherapy and radiation for head and neck cancer were introduced to prophylactic swallowing exercises and evaluated for dysphagia post treatment using flexible Nasopharyngolaryngoscopy (NPL). 50 Patients receiving radical radiotherapy on Telecobalt to a total dose of 66-70Gy in 33-35Fr over 7 weeks with concurrent weekly Cisplatin 40 mg/m² were evaluated before and after radiotherapy to assess the swallowing dysfunction.

Results: Patients diagnosed with squamous cell carcinoma of head and neck underwent concurrent chemotherapy and radiation from the month of May 2019 to January 2022. There was significant reduction in incidence of pooling and aspiration (p<0.0001) due to swallowing exercises in the post radiotherapy period. Aspiration pneumonia was observed in four patients who did not follow swallowing exercises during the post radiotherapy period. Most patients had overcome swallowing difficulty and there was improvement in weight.

Conclusions: Introduction of swallowing exercises in patients significantly reduces the swallowing dysfunction after the chemo radiotherapy. Swallowing exercises also reduces the chances of aspiration pneumonia.

Keywords: Squamous cell carcinoma, dysphagia, aspiration pneumonia.

Pallavi, Nancy, Sandhya, Kunal, Somnath

Department of Pain & Palliative Medicine, MPMMCC & HBCH, Varanasi. drpallavisingh01@gmail.com

Introduction: Cancer-pain is present in more than 70% of patients and abstruse to treat. Despite advances in pain management, its sub-optimally treated world-wide.

Aim: Study aimed to assess pattern of opioid prescription for cancer pain management in a tertiary care cancer centre and to determine the prevalence of pain and associated symptom burden in cancer patient.

Method: We conducted a retrospective review of electronic and paper medical records of 719 patients who attended pain & palliative care services from October-December 2020. Sociodemographic characteristics, performance status, associated symptoms and treatment were noted. Patients having incomplete records were excluded. Data was analysed in SPSS Version 21.

Result: Mean age was 50 years. Male were 60% (434). Nearly half 51.3% (369) had performance status of 2. Among all carcinomas, 13.1% (94) were buccal mucosa followed by gall bladder 10.6% (76). Majority 98.3% (707) had pain. 48.8% (351) patients had moderate pain followed by severe 30.9% (222) and mild pain 18.6% (134). Most preferred prescribing opioid was morphine. Average morphine milligram equivalent was 37.84 (SD-65.17). Median pain score was 5 (IQR 1.5-7). Significant correlation (R-0.3) of pain was seen with fatigue.

Conclusion: Opioid prescription almost followed WHO step ladder. Morphine remains indispensable, utilization of fentanyl and buprenorphine increased over time. Further study needs to be conducted with intervention to ascertain efficacy.

Anshika Gupta, Tapasi Barai, Shaleen Kumar,

Giddi Krishanamaurya, Punita Lal

Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow,

Uttar Pradesh, India

Email: anshikagupta9006@gmail.com

Introduction: Difficulty in swallowing, aspiration symptoms, trismus and a fungating mass in advanced HNC compromise on nutrition, and thereby patient’s quality of life (QoL). Enteral feeding through nasogastric (NG) tube is cheap, can be easily placed and managed at home. But patients find it uncomfortable and are reluctant initially. We did a retrospective survey to issues related to NG placement.

AIMS: To study the impact for nasogastric feeding on patients with advanced HNC.

Methods: 20 patients of advanced HNC were randomly taken in whom NG tube was placed. We looked into reasons of nasogastric tube placement, reasons of resistance from the patient and the subjective benefit achieved, once the tube was placed.

Result: The patients belonged to stage IV HNC. Median age was 47 years (41-58 years); 90% males; Median KPS - 70. NG tube was advised in patients with swallowing difficulty - 40% cases; trismus-35%; aspiration - 10%; Large fungating mass +/- fistula - 15% cases. Initial denial for nasogastric placement was due to social stigma - 55% cases; physical discomfort - 35% cases; 10% denied any problem. Following counselling, the tube was placed and training given. A survey was conducted thereafter - 60% patients experienced weight gain; 65% felt subjectively better; 25% felt their cancer had greater response; and 30% completed cancer treatment.

Conclusions: NG tube enteral feeding is easy to place; patients hesitate initially - due to looks or discomfort. Once placed, the patients experience improvement in their quality of life, weight gain and overall sense of wellbeing.

Dhayanandan.S*, Dr. Ramanan S.G**,

Dr. Janarthinakani.M**, Janani Ravi**

Cancare Foundation, Mumbai, India Background: A vast Majority of the cancer care are provided by the family- members during the palliation and end-of-life phase. The care-givers have substantial physiological and psycho-social distress leading to complicated and prolong grief after the loss of loved-one. Adequate attention given to support the bereaved family-members are comparatively less.

Aim: The study aims to assess the psycho-social well-being of bereaved family-members.

Method: The sample includes family members (n=40) who had attended the bereavement support group meeting. Author constructed questionnaire were used to assess palliation and end of life care satisfaction. Hospital Anxiety and Depression Scale were used to assess emotional distress. Descriptive statistics, chi-square and multi-nominal logistic regression were used to analyse the data.

Results: The findings report 52.5% and 40% of the bereaved family-members have severe and moderate distress. Results indicates 40% and 47.5% of bereaved family-members have borderline to extreme depression and anxiety signs. On satisfaction domain, bereaved family-members reported 72.5% of patients were extremely positive and hopeful and 65% of patients felt worth living. Nearly 75% of family-members reported high comfort with Doctor-Nurse relationship during palliative period, 50% of family-members suffer from guilt and 38% of the family-members colluded about the disease prognosis to their loved ones.

Conclusion: Despite the satisfaction regarding personal well-being and care of the loved one, family grievers had reported higher level of psychological distress and substantial levels of anxiety and depression. Mental health screening and accessible bereavement support group meetings should be implicated to improve the psycho-social well-being of the bereaved family-members.

Keywords: Bereavement, palliation, emotional distress, end-of-life-care and family members.

T. Shinde, S. Poojary, A. Chodankar, M. Paul, J. Deodhar

Tata Memorial Hospital, Mumbai email: tanvitshinde@gmail.com

Introduction: Respite palliative care(RPC) helps in symptom management of patients with advanced disease and caregiver empowerment. Yoga is a mind-body therapy. There are very few studies on psychosocial intervention in RPC model of service delivery.

Aim: To evaluate the effectiveness of yoga therapy in reducing anxiety and depression in adult patients with advanced cancer admitted in a RPC facility.

Methods: This is a single arm interventional study. Patient with advanced cancer admitted to RPC facility for atleast seven days with performance status 0-3 were included. Yoga therapy has been conducted by trained Yoga therapist for seven days. We assessed anxiety and depression by GAD 7 [Generalized Anxiety Disorder], PHQ [Patient Health Questionnaire]-9 respectively on day 0 and day 30.Descriptive statistic and inferential statistics were used for analysis.

Results:In this paper we report the data of initial 25 patients recruited in the study.19 patients were able to do yoga therapy until 30 days.60 % were women. 17(68%) patients weren’t on any disease directed therapy. The median age was 46 years.There was statistically significant difference reduction in median scores on GAD-7 (from 13 to 7) and median PHQ-9 (15 to 10) from baseline to day 30.

Conclusion: We found that yoga therapy was effective in reducing anxiety and depression symptoms in patient with advanced cancer admitted to RPC center.

Rajalekshmi Balu, Sreedevi Warrier, Aju Mathew,

Ashok Komaranchath

Pallium India

Introduction: The definition of palliative care has evolved and now encompasses all life-threatening/life-limiting diseases. Palliative care with its multi-dimensional approach of symptom management and psychosocial care aims to enhance the quality of life of people with cancer and their families.

Aim: To study the effectiveness of a virtual training to enable oncologists in practical management of pain and related communication.

Methods: Modules covering various aspects of pain management was developed and delivered online. The course completion rates were calculated. A detailed end evaluation was done among the participants to learn their confidence level in understanding, prescribing and communicating pain aspects to patients before and after the training program.

Results: The two online programs conducted were attended by 63 oncologists. The completion rate was found to be 82.5%. A paired t-test was run on a sample of 51 responses received to understand the mean difference between the scores obtained before and after the training. Mean difference in confidence was observed at 3.00 in managing pain, 2.31 in effective communication, 3.04 in bringing psychosocial issues in conversations, 2.08 in prescribing for opioids, 3.24 in prescribing for non-opioids, and 3.45 in prescribing for oral or IV morphine which was statistically significant at p- <0.001.

Conclusion: The virtual training program shows improved confidence levels and is an easier and effective method for dissemination of palliative care knowledge to oncologists to gain confidence in effective communication and pain management at various geographical locations.

Dr Susie Wilkinson, Miss Tamsin McGlinchey,

Professor Lia van Zuylen, Professor Carl Johan Fürst, Professor John Ellershaw

University of Liverpool, UK

Introduction: Good quality care at the end of life is a human right. The International Collaborative for Best Care for the Dying Person (the Collaborative) has developed the 10/40 Model of Care consisting of 10 principles and 40 outcomes of care. Over 600 organisations across several countries have implemented the model of care.

Aim: To increase the evidence base of consensus for the 10/40 model of care by conducting a Delphi survey.

Methods: Three rounds of a Delphi questionnaire were completed via Google Forms. There was electronic consent and data entry. Purposive and snowball sampling was used using first the Collaborative members.

Results: • Round 1 (n=160) Very high agreement on 8/10 key principles and 35/40 outcomes • Round 2 (n=103) Agreement was reached on 2/2 principles, 6/6 core outcomes. Low agreement remained on one core outcome 1.1 • Round 3 (n=57) Informed by Round 2. The original wording of outcome 1.1 was revised. High agreement reached.

Conclusions: Through the Delphi survey the content of the 10/40 Model was agreed with minor wording amendments. This has provided an opportunity for the Collaborative to become a platform to develop and promote a number of key initiatives to support the development and implementation of the 10/40 continuous improvement model work in clinical practice. This includes a quality improvement framework for best care for the dying, providing members with a growing portfolio of diverse education and training programs, providing international networking opportunities to come together with an Annual Symposium and Summer School.

Kashish Vats, Jayita Deodhar, P.N. Jain, Raghu Thota,

Shamali Poojary, Prasun P, Shreya Nair, Dhanashri Kudal, Anshita Sharma

Tata Memorial Hospital, Mumbai, E-mail: kashishvats10@gmail.com, 9891499393

Introduction: Patients with Acute Leukaemia (AL) have high symptom burden, undergo aggressive treatment and face serious challenges, leaving them and their caregivers vulnerable. Referral to Specialist Palliative Care(SPC) can help them prepare better for the uncertainties throughout the disease trajectory.

Aim: The aim of this study was to determine the referral patterns to SPC from Multidisciplinary Leukaemia Clinic (MDLC).

Methods: A retrospective, descriptive, cross-sectional analysis of medical records of patients discussed in MDLC attended by a Palliative Care Specialist over a 3-year period was done. Demographic characteristics, diagnosis, referral to Palliative Care clinic, goals of care(GOC) at the time of referral and later referrals were recorded.

Result: Of 300 patients’ MDLC records screened, 294 met the eligibility criteria. 188(63.9%) referred patients were males. Median age was 30 years. 70(23.8%) patients were referred to SPC, out of which 35(50%) had a diagnosis of AML. 59(84.3%) patients had definitive GOC, with Early Palliative Care as the GOC in 49(70%) patients. 26(8.8%) patients discussed in MDLC were referred later in the course of disease with varying GOC.

Conclusion: Almost a quarter patients were referred to SPC that were discussed in MDLC with Palliative Care Specialist. Further research should focus on integrated model of care for AL patients.

Varun T.M, Prasun P, Shamali Poojary, Kashish Vats,

Shruti Kamble, Jayita Deodhar

Tata Memorial Hospital Mumbai, varuntmv95@gmail.com, 9738234529

Introduction: Admitted advanced cancer patients have high physical and psychological symptom burden during End of Life (EOL). A considerable number of these patients are referred to Specialist Palliative Care (SPC) which helps in alleviating symptom burden.

Aim: To assess the symptom burden and its management in advanced cancers patients during EOL at a tertiary care centre.

Method: This is a retrospective, descriptive, cross-sectional analysis of electronic medical records of patients admitted in TMH and was referred to SPC for EOL Care over a period of 6 months. Demographic characteristics, diagnosis, patient symptoms and management done were recorded.

Results: Medical records of 48 patients were evaluated. 25(52%) patients were female and the median age was 59 years. Median time period from date of referral to date of death was 1 day. Most frequent cancer diagnoses were Breast (23%), Lung (20%), Head & Neck (12%), Hematological (8%) and Ovarian (6%). Most common symptom was breathlessness seen in 41(85%) patients and all of them required O2 support. 19(39%) patients were on Morphine, 16(33%) were on Benzodiazepines and 14(29%) were on Haloperidol.

Conclusion: Advanced cancer patients referred to SPC during EOL have significant symptom burden and required multidrug management to alleviate the same. Future study needs to be done to understand the symptom burden and plan appropriate management.

Dr. Devina Juneja, Dr. Seema Mishra

Junior Resident, Dept. Of Palliative Medicine, AIIMS, New Delhi,

E-mail : juneja.devina1995@gmail.com, Ph. No: 7983651838

Introduction: Takayasu arteritis is a systemic inflammatory condition. It is a chronic disease and may need long-term palliative care.

Aim: To assess palliative care needs in a patient with Takayasu arteritis.

Methods: Assessment of palliative care needs was done on a 47-year old female patient. Her baseline diagnosis was in 2016, following multiple lines of therapy. Evaluation was done using the SF 36 questionnaire. Intervention in the form of opioid, counselling and communication was given.

Results: Analgesic titration for headache was done and a transdermal patch of 12 mcg/h Fentanyl was applied. SF 36 questionnaire was used to evaluate the impact of the disease. The patient responded “mostly true” to expectation of her health getting worse, “definitely false” for her health being excellent, “mostly true” for seeming to get sick easier than other people, feeling like a nervous person “a good bit of time”.

Conclusions: Issues faced by the patient were addressed in family meeting. They were explained about the disease, treatment and recurrent nature of infections pertaining to the usage of immunosuppressive drugs, hence the recurrent visits to the Emergency Department. Pain NRS from 8/10 to 2/10 was managed by optimal opioids. It is prudent to consider palliative care in such a scenario.

Dr. Devina Juneja, Dr. Vinod Kumar

Junior Resident, Dept. Of Palliative Medicine, AIIMS, New Delhi,

E-mail: juneja.devina1995@gmail.com, Ph. No: 7983651838

Introduction: Many patients on maintenance dialysis experience financial hardship. Existing studies are mainly cost analyses that quantify financial hardship in monetary terms, but an evaluation of its impact is also warranted.

Aim: This study aims to explore financial hardship and its relationship with symptom burden among patients on dialysis.

Methods: A study was conducted in the Dialysis unit, at AIIMS, New Delhi. A socio-demographic questionnaire was made to fill by the patients undergoing dialysis and recruited for the study. Symptom burden was recorded using Dialysis Symptom Index Scale questionnaire (30 questions, Likert scale, 0-4), filled out by the patient.

Result: A preliminary study assessed income level, employment status, healthcare funding, and financial status among 22 patients. While relationships between decreased income, unemployment, and overall symptom burden were identified, evidence suggested that several symptoms, including fatigue (12th symptom in DSI), low mood (27th symptom in DSI), and insomnia (24th symptom in DSI), were more likely to be associated with changes in financial status.

Conclusion: Our findings suggest that poor financial status may have a negative effect on physical and psychological well-being. However, a clear definition of financial hardship is warranted. Improving this assessment among patients on dialysis may prompt early intervention and minimize the negative impact of financial hardship.

Dr. Devina Juneja, Dr. Sushma Bhatnagar, Dr. Saurabh Vig

Junior Resident, Dept. Of Palliative Medicine, AIIMS, New Delhi E-mail : juneja.devina1995@gmail.com, Ph. No: 7983651838

Introduction: Chronic pain emanating from the abdominal wall is frequently unrecognized or confused with visceral pain, often leading to extensive diagnostic testing before an accurate diagnosis is established. Anterior cutaneous nerve entrapment syndrome (ACNES) is one of the most frequent causes of chronic abdominal wall pain.

Aim: To assess pain and palliative care needs in a patient with Anterior Cutaneous Nerve Entrapment Syndrome.

Methods: A 31-year-old male patient had a baseline ACNES diagnosis in 2020. He had inadequate pain relief (NRS 7/10) and was currently on erratic analgesic management on an SOS basis.

Results: After detailed history and examination, the pain and palliative issues were addressed. A transverse abdominis plane (TAP) block was planned for the patient. Optimal oral analgesics were added. He was advised to not take analgesics erratically and the concept of the pain cycle was explained. The disease and its course were explained, as there was a lack of knowledge concerning the treatment lines.

Conclusions: Communication with the patient as well as relatives was of key importance. There was a paucity of knowledge in terms of analgesics usage. Pain NRS from 7/10 to 2/10 was managed by TAP Block. NSAIDs and Gabapentin were added for superadded analgesia. It is prudent to consider pain intervention and good communication skills in such a scenario.

Tanya Multani

Aarambh Palliative Cancer Care Center, Ahmednagar, Maharashtra, India, Email: aarambhcancercare@gmail.com, Contact: 9422735736, 9511892176

Introduction: While Palliative care is just considered end of life care, not all nurses are trained in it and not all know about it. The hospice or palliative care means sensitive touch and safe keeping patients diagnosed with life limiting diseases or terminal diseases throughout the treatment. While experience is a crucial part, palliative education comes in as a critical thinking teacher to the women who are new to the nursing field. These psychological skills are instilled when we compare the amount of expertise in handling the ‘on point action’ they take, which we get with acknowledgement of their cognitive abilities. Boosting experienced nurses with learning. Imbibe into their psyche and career intervention through education syllabus and training, helps identify the mental fog a nurse may go through.

Methods: Taking a ‘Cognitive Difficulty Scale’ test that compares Trained experienced nurses with non-Trained experienced nurses. Designed by Prasad Psycho institute, this test gives items that measure learning, decision making, problem solving etcetera cognitive aspects within 40 item test that shows cognitive difficulties faced by trained and non- trained staff. The scale includes high, moderate and low difficulty on the items.

Conclusion: This test battery will provide us with extensive knowledge of how critical thinking and on the spot actions are enhanced with education provided for palliative care. Nurses get beforehand idea of how care should be provided; giving knowledge and training skills taught in the palliative care courses, helping them become mentally aided for any situation. Experience is a major factor of influence, but the study addresses the need of palliative education for better understanding, care and reduce anxieties faced, even if the nurse has high experience.

Keywords: cognitive difficulty, anxiety, experience, training, critical thinking, education of palliative care.

Preetha Mahesh

preethamike@gmail.com

Introduction: Development-induced displacement and resettlement (DIDR) occur when people are forced to leave their homes in a development-driven form of forced migration. Here displacement has meant a loss of livelihood, habitat and assets, social disruption and disorder and severance from an ecosystem which had sustained them. A resettlement project involves acquiring and developing large tracts of raw land to generate serviced lots and/or housing units for families displaced from sites earmarked for government infrastructure projects and due to natural and manmade disasters. Our NGO provided Nurse palliative care in a resettlement area in Chennai during the pandemic.

Methodology: Multiple discussions between the home care team and with the patients and families

Results: A total of 480 nurse-led homecare visits were conducted from May 2020 to July October 2022. Apart from medicines and doctors visit,108 psychiatrist visits almost 260 food kits were delivered for patients receiving palliative care. Empirically we found that they have a high level of psychological distress and struggle from lack of information which caused significant distress. They also faced significant compounded trauma and issues related to low socio-economic and isolated status.

Conclusion: Understanding the experiences of displacement, humanitarian and protection needs, and access to appropriate solutions (e.g. healthcare, education and shelter) among these people is essential but has not received sufficient attention.

A P Sreekanth*, Babu Abraham

apsreekanth99@gmail.com, babu@palliumindia.org

Introduction: The present awareness of the community about the concept of palliative care and of the services available remains inadequate for widespread acceptance and service uptake. A high level of awareness among the community can benefit in extensive and improved service delivery to the people in need of palliative care. The community based palliative care approach which involves the participation of volunteers whose support and care is often considered to be significant.

Aim: To identify the influence of awareness programs in palliative care volunteerism

Methods: As part of the awareness programs, a faculty team consisting of 4 members. The team, included social workers, nurses, doctors, and trained volunteers who are closely working with palliative care patients. Awareness programs using IEC materials were conducted in and around Trivandrum, Kerala including housing societies, schools, corporate offices and colleges

Results: The study deals with how many awareness programs with the help of IEC materials are conducted and the total number of participants covered between September 2021 to November 2022. Around 414 awareness sessions had been conducted in total within this period and total number of participants covered include 15,129. From this data we can also identify the number of persons who has started volunteering for the benefit of the patients.

Conclusion: This study demonstrates the beneficial effects of public awareness campaigns in altering public views and enhancing attitudes toward and service delivery of palliative care.

Sapna Mathew, Amy Siew, Honey Mathew, Sabitha Babu

Bangalore Baptist Hospital, Banaglore, India

Introduction: The practice of providing anticipatory medicines to the patient’s family by the Bangalore Baptist Hospital palliative care team to alleviate unnecessary anxiety at crisis times and emergency room visits for terminally ill patients continued after the lockdown. This ‘Emergency Kit’ contains medications for anticipated symptoms such as pain, nausea, vomiting, delirium, restlessness and respiratory secretions. Tramadol, Ondansetron, Hyoscine, Haloperidol and Ranitidine injections along with Lorazepam tablets (singly packed and labelled well), and Midazolam as needed, packed with a 23-gauge butterfly cannula, an alcohol swab and syringes in a seal proof package along with an anticipatory prescription, phone helpline number and video were used.

Aim: The aim of this study was to determine the efficacy of EK to reduce the emergency room visits of palliative care patients.

Methods: An observational prospective study of the patients provided with an EK from March2020 to October 2022 was done as a continuation of a previous study during lockdown. The interval between provision of the kit and death, number of emergency visits after receiving the EK and the profile of used drugs was obtained.

Results: 152 out of208 (73%) died within 15 days of having received the EK, Although only 43.9% patients used the EK (with Lorazepam as the most frequently used drug) the number of patients who visited the hospital reduced, that is, only 6.3%(14 out of 221) patients visited the hospital after receiving the EK.

Conclusion: The practice of providing anticipatory medicines helps to reduce Emergency room visits by patients in palliative care.

Leena V Gangolli, Vinod Kumar Gangolli

Sukoon Nilaya Palliative Care Centre, King George V Memorial, Mumbai, India

Introduction: As palliative care advocacy and understanding grows, non-cancer conditions like neuro degenerative conditions, chronic renal, hepatic, pulmonary and cardiac disease are included in conditions requiring palliative care. Palliative care services in Canada, United States, United Kingdom, Australia, Hon Kong and several other countries include exercise as an important component to address quality of life, symptom burden and rehabilitation. Literature review of Indian resources shows that exercise is not yet recognized as an important component of palliative care services in India.

Aim: To develop a locally and culturally feasible recommendation for prescribed, structured exercise as part of palliative care services based on systematic review of international literature to evaluate the safety, feasibility and effectiveness of exercise in palliative care settings.

Method: Electronic databases were searched for exercise randomised controlled trials involving individuals with life limiting conditions including, not limited to, cancer published prior to October 2022. Guidelines and recommendations by professional organizations and associations were also reviewed.

Results: There is a large body of evidence based literature from international sources documenting the vital role of formal structured, prescribed exercise in palliative care settings. Participants who engaged in exercise programs experienced an increased quality of life, fitness and strength and a decrease in fatigue.

Conclusions: Formal and prescribed exercise programs, which are not common in India as yet, need to be developed and implemented as part of the palliative care services offered to patients and families.

Dr Amit Jain

Consultant Pain and Palliative Medicine, Dharamshila Rahat Medical Centre, Delhi, India, Mobile: 9212850560, dr.amitjain@rediffmail.com

Background: Telehealth is now emerging as an important aspect of providing quality palliative care to all, which is cost effective and more accessible. It can anticipate and prevent the deterioration in patients’ health status quickly and to intervene early to provide continuum of quality care.

Objective: Our study aims to evaluate impact of telemonitoring on clinical outcomes, health services utilization and quality of life of patients and care givers.

Method: We randomly assigned 50 patients, who came to hospital for palliative care consultations (OPD and IPD) in between July 22 to Dec 22 to undergo telemonitoring in addition to usual care after discharge of patients. Telemonitoring is done by a daily call to patient or family members and to enquire about symptoms and general health status, all were reviewed by team. Primary end point was readmission or death by any cause and secondary end Point was number of hospitalizations, number of hospital days and general quality of continuum of care.

Results: The telemonitoring group and the usual-care group did not differ significantly with respect to the primary end point, Readmission for any reason occurred in 39.3% of patients in the telemonitoring group and 47.4% of patients in the usual-care group. Death occurred in 31.1% of the telemonitoring group and 29.4% of the usual care group. Secondary outcome shows significant difference.(p>0.1%)

Conclusion: Telemonitoring gives patients an extra layer of support, being monitored for their symptoms and early interventions, reduces hospitalizations, imparts better quality of life and improved care giver stress.

Shruti Kamble, Varun TM, Jayita Deodhar Shamali Poojary, Prasun P, Shreya Nair, Raghu Thota, P.N.Jain

Dept of Palliative Medicine, Tata Memorial Hospital, Mumbai, kambleshruti2109@gmail.com, 9004275160

Introduction: A significant number of patients referred to oncological palliative care services present with upfront metastatic disease and high symptom burden. Most of these patients are not fit for or might not benefit from cancer directed treatment.Palliative Care (PC) plays an important role in alleviating these symptoms and improving quality-of-life.

Aim: To assess symptom burden of patients with advanced cancers who are not planned for receiving any cancer directed therapy.

Method: A retrospective observational analysis of electronic medical records of patients referred to specialist oncological palliative care outpatient clinic over a period of 6 months was done.Patients with advanced cancers not planned for any cancer directed treatment on first visit were included. Demographic-characteristics,diagnosis,performance status and presenting- symptoms were recorded. Descriptive statistics were used for analysis.

Results: Medical records of 100 patients were evaluated. 51 patients were female and the median age was 56 years. Most frequent cancer diagnoses were gastrointestinal,head and neck,and hematological cancers seen in 59,13 and 9 patients respectively. Majority of the patients had a European Cooperative Oncology Group-Performance status of of 4.Moderate to severe intensity of pain (89%) was the most common presenting symptom followed by nausea (10%), breathlessness(8%), tiredness(6%), drowsiness (2%).

Conclusion: Advanced cancer patients referred to PC had complex symptoms,of which pain is most prevalent.Future studies to understand symptoms specific to different cancers and psychosocial issues would help in comprehensive management for these patients.

Dr. Savan Harsukhbhai Kukadia, Dr. Ravi Umrania,

Dr. Bhavna Patel, Dr. Priti Sanghvi

Gujarat Cancer and Research Institute, Ahmedabad,

Phone - 8141808334, Email - savankukadia@gmail.com

Introduction: A 37 year old female patient of Recurrent Soft Tissue Sarcoma of right thigh with lung metastasis with K/C/O seasonal Asthma since 17 years, referred to palliative care with complains of breathlessness at rest (8-10 episodes/day) (VAS-D score of 9 for dyspnea), unable to lie down supine, upper and lower backache and loss of sleep since 2 days.

Aim: To get relief in intractable dyspnea and improve quality of life.

Method: Patient was treated with Morphine (Oral and Injectable form) after taking informed consent, Tablet Paracetamol, Steroids (Inhalation and injectable form), Midazolam injection and non - Pharmacological management. Patient was monitored with Vitals, VAS -D(Dyspnea) for dyspnea, Episodes of dyspnea in a day, VAS score for pain.

Result: Patient had gradual relief in Dyspnea with intravenous Morphine and Other multimodal therapies and need of oxygen was decreased.. VAS-D score decreased from 9 to 2, decreased in episodes on dyspnea from 8-10 episodes/day to 3 episodes/day, VAS score improved from 5 to 2.

Conclusion: We could conclude that, strong opioids with other multimodal therapies are useful in treatment of Intractable Dyspnea in terminally ill patient.

Geraldine Monteiro*, Shubha N P, Supriya B G,

Nandini Vallath

Department of Palliative Medicine, St John’s Hospital, Bangalore, India

Introduction: Oral hygiene and maintaining a healthy mouth not only depends on the types of food used, and regular hygiene, but also on the chemical composition of various antiseptic solutions routinely used which may alter the salivary composition, pH and the oral microflora.

Aim: To observe and compare the alterations in saliva pH, tongue coating pH and oral microbiome with one week use of Oral bland rinse Vs Chlorhexidine mouthwash in normal healthy volunteers

Methods: After obtaining an informed consent, 15 volunteers (male and female) will be recruited for the study, fasting saliva sample collected, its pH and tonicity will be estimated. Volunteers then instructed to rinse their mouth with an oral bland rinse before, after food and at bed-time (6 times/Day) for 8 days followed by the rinse of the mouth with chlorhexidine. The tongue coating pH will be checked, using pH indicator strips. Bacterial load will be calculated by quantitative assay using 5% blood agar and will be expressed in CFU/ml.

Result: The study is ongoing and the analysis of the responses will be shared during the final presentation

Conclusions: The findings of the study are likely to influence the overall health and hygiene of the oral mucosa by the use of an easy to prepare mouth rinse.

Meenakshi V Venketeswaran¹, Sunitha Daniel¹,

Babita P. Abraham Varkey²

¹Cancer Institute (WIA), Adyar, Chennai,

²Bangalore Hospice Trust - Karunashraya, Bangalore. meenaram99@yahoo. com.9940370735

Introduction: In patients with aerodigestive tract cancers, route of medication administration can pose a challenge. Analgesic efficacy of methadone when administered through a feeding jejunostomy (J-tube) is not well described.

Aim: To describe the use of liquid methadone through a J-tube and the rapid switch from Phenytoin (PHT) to levitaracetam (LEV) to mitigate potential drug interactions.

Methods: This case report illustrates the management of a young male with an advanced cancer of the hypopharynx, on J-tube feeds, with poor pain relief with immediate release IR morphine. Patient was also on Phenytoin (PHT) for secondary prevention of seizures which we rapidly switched to levitaracetam (LEV) to facilitate an opioid rotation to methadone.

Results: Patient was successfully transitioned to liquid methadone through the J-tube along with adjuvants. PHT was rapidly switched to LEV. Pain score came down to NRS 2-4/10. Patient did not have any breakthrough seizures.

Conclusion: Liquid methadone is clinically effective when administered in a J-tube. PHT can be safely substituted with LEV.

Meenakshi V Venketeswaran, Daniel Raj J,

Thendral Ramasamy, Sabitha Binu Ninan

Cancer Institute (WIA), Adyar, Chennai -36 meenaram99@yahoo.com. 9940370735

Introduction: Liquid Methadone has an excellent oral bioavailability and unique mechanism of action making it a potent drug to treat difficult pain in children with cancer. Despite these properties, there is diffidence among palliative care physicians in initiating Methadone at end of life (EOL) especially at home.

Aim: To describe the practical use of liquid methadone based on the recommendations of the expert consensus whitepaper in two children with progressive cancer during end of life at home

Methods: This is a case report following the experiences of two children with advanced cancer having refractory pain. Both toddlers were initiated with Methadone (15mg/day in 3 divided doses) and managed at home. The children were under daily telephonic surveillance for analgesic efficacy and adverse effects. Parent reported outcomes were documented.

Results: Both parents reported decrease in pain and irritability following initiation of Methadone. This was sustained for the entire follow-up period from initiation of Methadone to the death of the child (14 days and 37 days respectively). There were no adverse effects reported. Methadone was titrated up to 27.5 mg in one child along with rescue morphine.

Conclusion: Methadone is a potent yet affordable option as the sole analgesic or adjuvant in the management of refractory pain in children with advanced cancer.

Anusha Cheekati, Anuaha

Sparsh Hospice

Introduction: Malignant wounds are the result of cancerous cells infiltrating the skin and its supporting blood and lymph vessels causing loss in vascularity leading to tissue death. The lesion may be a result of a primary cancer or a metastasis to the skin from a local tumour or from a tumour in a distant site.

Objectives: After participating in this educational activity, the participant should be better able to 1. Apply patient prognosis to realistic outcomes, patient education, and pain management strategies. 2. Demonstrate ability to assess wounds and select appropriate dressings. 3. Analyse patient scenarios for use of various non-dressing wound treatment modalities.

Methods: 1) Explain to patient and caregivers how a malignant wound develops. 2) Describe the most common symptoms associated with malignant wounds and their causes. 3) Discus how and why a comprehensive patient assessment should be performed and what aspect of the wound should be included in such an assessment. 4) Identify the psychological and social problems that might be encountered by patient with a malignant wound and symptoms. 5) Manage and treat wound infection and wound exudate and protect the peri-wound area. 6) Facilitate atraumatic dressing changes.

Conclusion: Assessment of malignant wounds, selection of appropriate dressings, related symptom management, and patient and family support are vital aspects of cutaneous wound management in advanced cancer.

Philomena D’Souza¹ , Barbara Da Silva²,

Roma Prabhudessai³, Sabina Fernandes⁴ , Priya Dias⁵, Ira Pereira⁶

¹Philomena D’ Souza; Novi Survat Goa, Goa- India; email id: dsouza.mina@ gmail.com; Contact no: 7769043243;

²Barbara Da Silva^; Novi Survat Goa, Goa- India; email id: barbaradasilva23@gmail.com; contact no: 9765220574; Address: H. No 72, Gomes vaddo, Majorda Salcette Goa-403714,

³Roma Prabhudessai; Novi Survat Goa, Goa- India; email id: romaprabhudessai@gmail.com; contact no: 9421868717; Address: ‘YASH, F-11, Padmanarayan estate, gogol, Margao-Goa 403602,

⁴Sabina Fernandes; Novi Survat Goa, Goa- India; email id: sabirayasin74@ gmail.com; contact no: 8369653608; Address: H.No 243/5, Joe Mitra woods. Combhat, VTC: Curtorim, PO: Curtorim, South Goa- 403709,

⁵Priya Dias; Novi Survat Goa, Goa- India; email id: priyadias12@gmail.com; contact no: 9822139326; Address: C/O Remy Rodrigues H/N 241 behind Goa land hotel madki baazar Margao Goa- 403601,

⁶Ira Pereira; Novi Survat Goa, Goa- India; email id: iralibiepereira@yahoo. com; Contact No: 7350579076; Address: H. No 513, Sodiem Maina, Siolim, Bardez Goa- 403517 Background: Even though Goa is a small state in India, it becomes difficult to provide high quality of medical care to children especially those residing in remote and poorly accessible areas of Goa.

Aim: To provide comprehensive rehabilitation and home care services to children from 0-18years of age diagnosed with chronic illnesses through, a multidisciplinary team of qualified professionals who are committed to supporting families with such children.

Discussion: The project is in its initial phase of implementation. The key process include regular home visits, counselling, telephonic consultation, nutritional support, rehabilitation services and medical aid along with regular hospital follow-ups. The project aims at creating a community outreach to rural parts of Goa using college students, primary healthcare centres and community volunteers.

Keywords: Paediatric palliative care, home based palliative care, quality of life

TRACK 7: Theory of Change and Development of Subspecialist Palliative Medicine

Sub category: Paediatric Palliative Care

Republica S, Udhayavani K and Gauthaman K*

RMD Specialities Hospital, A unit of RMD Pain and Palliative Care Trust, Chennai 600017, India

Email: drgauthaman.rmd@gmail.com; rmdacademyforhealth2019@gmail.com, Tel: +91 9551572736

Introduction: Oral Squamous cell Cancers (OSCC) ranks as the 16^th most common cancer in the world and 11^th most frequent in males (Miranda- Filho and Bray et al., 2020). OSCC is strongly associated with tobacco consumption. We present a case of an invasive OSCC who reused standard oncological care (SOC).

Aim: To highlight the importance of palliative care (PC) integration into SOC for holistic care.

Methods: An interventional study of a 61years male patient with OSCC for 1.5 years. Patient was anaemic; a cauliflower-like growth (12x10 cm) with greenish-yellow discharge was present in the left oral cavity and cheek, extending to the retromolar trigone and floor of the mouth. Patient also had an oro-cutaneous fistula. Pus culture was positive for K. Pneumoniae and P Aeruginosa. H/o of chewing tobacco (>20y); hypertension- 15y and diabetes-7y on allopathic treatment. However, the patient refused SOC for oral cancer and relied on Siddha treatment.

Results: Haemoglobin concentration corrected with packed cell transfusions. Blood glucose was kept under control. Frequent wound debridement, oral care, antibiotics, balanced-diet and hydration improved wound-bed granulation. Patient and family members were counselled and explained in detail on the need for SOC by sharing previous OSCC patients’ care and outcomes at our centre. Patient gained trust and courage to undergo chemo-radiation and his disease burden reduced considerably with improvement in quality of life (QoL).

Conclusions: Integration of PC improved the QoL, reduced the burden of secondary infection, and significantly reduced pain. Therefore, PC integration at an early stage of treatment is imperative.

Keywords: Oral Squamous cell Cancers; Standard oncological care; Palliative Care; Multi-disciplinary team; Holistic care.

Karthik KVS, Republica S, Bhargavi S, Arunkumar D, Gauthaman K*

RMD Specialties Hospital, A unit of RMD Pain & Palliative Care Trust, Chennai-600017, India

Email: drgauthaman.rmd@gmail.com; rmdacademyforhealth2019@gmail. com, Tel: +91 9551572736

Introduction: Parkinson’s disease (PD) is the second most common progressive neurodegenerative disorder, affecting more than 10 million people worldwide. PD is characterized by motor and non-motor symptoms associated with loss of dopaminergic neurons. Genetic and environmental factors are mainly implicated.

Aim: To emphasize the role of holistic care in palliative therapy in a PD patient with motor disability.

Methods: A case study of a 81 years female patient with PD for 1.5 years who demonstrated classical features of PD including resting tremors, pillrolling movement, apathy, muscle rigidity and gait disturbances. She had undergone proximal femoral nailing (R) following a fracture sustained due to fall. Since then she had developed marked limitation of movements in her daily activities, weakened muslce strength and neurogenic bladder. Relevant investigations and MRI (brain) were done. Medical treatment for PD and associated problems were provided along with physiocare, counseling, yoga, nutrition and symptom reduction methods.

Results: Medical therapy helped in maintaining the blood pressure and controlling the overactive bladder. Holistic care greatly helped in limiting motor and non-motor symptoms, as well as in managing her daily activities independently. Holistic intervention also improved her self-confidence, enhanced recovery, well-being and overall quality of life (QoL). Caregivers were psycho-educated on PD management.

Conclusion: Integrating physical therapy and balanced nutrition in early PD will reduce neurodegeneration. Holistic care, therefore plays a vital role in decelerating motor and non-motor symptoms of PD and improves QoL.

Acknowledgements: The case study support provided by Agashini R and Muthuperiyanayagam are acknowledged.

Keywords: Neuro-degenerative disorder; Parkinson’s disease; Holistic care; Palliative care; Quality of life

Manisha Nandkumar Pawar, Lucy Qardrose, Sachin RN

HBNI University, Tata Memorial Hospital, Mumbai, India

Introduction: Spiritual care encompasses an attitude and behaviour shaped by nurses’ spiritual nursing values. It has significant impact on patients physical and psychological recovery. Aim: Explore whether nurses gain benefits of positive changes through spiritual care training.

Method: Exploratory survey design. The data was analyzed using descriptive and inferential statistics through the SPSS Version 21. The workshop was conducted for registered practising nurses with title spirituality a nursing perspective: making it visible dated 7^th June 2022. A post test with goggle survey form with nurse’s attendance online method using you tube and zoom link. Written permission was obtained. Statistical significance was accepted as p<0.05.

Results: The sample size was of 338 nurses. The Cronbach Alpha Coefficient was established to be 0.70.The study found that 76% reported since becoming registered nurses they have not received any specialised education on spiritual care. 67% of nurses had received no training on spirituality and spiritual care. 81% nurses have encountered clients with spiritual needs and 43% are aware of these needs through nursing care plan and observations. Significant difference (p>0.05) was found between educational content, training regarding spiritual care and religion.

Conclusion: Nurses do not receive sufficient training on the subject of spiritual care, both before and after graduation; but their perception of the topic is quite high. Integrating spiritual care into nursing education programs practices can boost nurses’ levels of spiritual care.

Alice Stella Verginia

Institute of Palliative Medicine, Calicut, India

Introduction: Quality of life in health care in general, is the perceived quality of an individual’s daily life, that is, an assessment of their well-being or ability to carry out activities of daily living. (QOL) is defined by the World Health Organization as ‘individuals’ perception of their position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns

Aim: To give good QOL in the view of person’s physical health, psychological state, personal beliefs, social relationships and their relationship to salient features of their environment.

Method: Simple method of communication with patient and family. About ten patients whose physical issues was attended but their emotional part, that is the wish to meet their beloved ones at the time of death, unfulfilled other issues was not met.

Result: Now the end result was that they all died and their wish was not fulfilled. So here the question is whether the patient and family had a good quality of life? How can the health care team assure that the QOL was good?

Conclusion: When we say good quality of life, not only physical issues, but an evaluation on the view of person’s psychological state, personal beliefs, social relationships and their relationship to salient features of their environment in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns has to be met.

Shahid Shaikh, Sadhana Dhandore, Zarna Jain, Mansi Shah

Happy Feet Home, India

Introduction: Happy Feet Home is a palliative care center in Mumbai. It provides day care services to the children affected / infected with life threatening / life limiting illnesses. Art Based Therapy (ABT) sessions are conducted by our facilitator at Sion Hospital, Mumbai for children affected with illnesses like HIV, Thalassemia major and Cancer. These children visit the hospital either monthly or bimonthly for their treatment and attend the session then. 24 sessions over a 6-month period from April to September 2022 have been conducted. Since the parents have to run around to different departments for the treatment and investigations, the children feel more stressed and alone. The treatments itself are also painful and distressing for the children.

Aim: To assess if the ABT sessions reduce the stress and increase the happiness quotient for the children attending them.

Method: ABT sessions are conducted in the curated space provided by the hospital. A total of 270 children have been seen for the purpose of this study.

Results: 1) The curated space helps children feel safe and relaxed and express themselves freely without any inhibition. 2) 25.26% of total children have attended sessions more than once. 3) 41% of these children provided detailed feedback. 4) 100% of these children reported enjoying the sessions and feeling relaxed because of them. 5) 40% of these children also expressed having gained new insights from the sessions.

Conclusion: ABT sessions in the curated space helps reduce stress and increase the happiness quotient for the children.

Zarna Jain, Mansi Shah, Saloni Sawanani

Happy Feet Home, India

Introduction: HIV and Thalassemia Major are forbidden illnesses in the society. Children get these illnesses from their parents or during blood transfusion. Most of the children who have HIV are orphans or have single parents. Thalassemia children have stunted growth or have regular absence from the schools during the blood transfusion days HFH is a palliative care center in Mumbai working with HIV positive and thalassemia major children coming from a marginalized background.For the purpose of this study, we have considered 124 children (73 Thalassemia Major, 41 HIV + children and 10 affected children) who are a part of the holistic day care services provided.

Aim: To demonstrate that the children with life threatening / life limiting illnesses of HIV or Thalassemia Major are discriminated in the society

Methods: Interviewing the children registered with HFH and understanding their experiences.

Results: 1. 100% of the children who have HIV have been discriminated in their life because of the misconception that it is easily contagious or it the individual’s fault. 2. 100% of the children with Thalassemia Major have been discriminated in their life because of their need to take routine offs for the transfusion, or their looks or inability to be physically as agile.

Conclusion: There is severe discrimination faced by these children in the society. Measures should be taken to spread awareness and provide equitable opportunities for all.

Namuna Shrestha, Arati Poudel, Sunita Bhandari,

Amrita Thapa, Adipti Pantha, Vardan Raj Karki, Anil Pandit, Ruth Powys, Daniel Munday,

INF Nepal

Email: namuna.shrestha@nepal.inf.org, Email: arati.poudel@nepal.inf.org, Email: sunita.bhandari@nepal.inf.org, Email: amrita.thapa@nepal.inf.org, Email: adipti.pantha@nepal.inf.org. Email: vardan.karki@nepal.inf.org, Email: anil.pandit@nepal.inf.org, Email: ruth.russell@nepal.inf.org,

Email: daniel.munday@nepal.inf.org

Introduction: Palliative care (PC) need in Nepal is rising from increasing non-communicable disease (NCD). The National Strategy for PC (2017) commits to PC availability close to home. ‘Sunita,’ a three-year project, will initially develop a rural primary PC model focusing on primary healthcare services and community provision in Lamjung District. Insights into PC need, caring practices and health seeking behaviour are needed.

Aim: Conduct baseline review to inform model design and research priorities.

Methods: Multiple methods: Analysis of public records and routinely kept hospital admission data to determine NCD prevalence and health service availability and use. Secondary analysis of 2017 household survey of palliative care needs. Literature review of caring practices and health seeking behaviour in rural Nepal.

Results: Lamjung has two government hospitals and 58 health posts. 12.7% of the population over 60 years (Nepal 8.7%). One study reported high incidence of NCD. Household study: 85/2071(4.2%) of population had palliative care needs, commonest from chronic respiratory conditions. 56% used local health facilities and 29% higher centres. 69/85(81%) relied on proxy consultations. Most district hospital inpatients were from local area or areas with roads leading out Lamjung which passed near the hospital. COPD admissions were the commonest amongst NCDs. 78.6% of Nepalese with certain NCDs reported consulting private health facilities. No relevant studies report community caring practices.

Conclusions: In Lamjung high level of need for PC exist. Health seeking behaviour is complex. These results will inform model development. Research will focus on community caring practices and health seeking behaviour.

Rajeev Shrestha

Rajeev Shrestha, INF Green Pastures Hospital, Pokhara, Nepal;

Email: rajeev.shrestha@nepal.inf.org; Phone No: +977-9845445205

Introduction: Palliative care services have been operating in Nepal since 1991. Morphine has been manufactured in the country since 2009. No previous studies have reported on Morphine availability in Nepal.

Aim: To explore the current opioid availability, production and supply in Nepal.

Methods: Hospital pharmacists and medication manufacturers were contacted and interviewed using a semi-structured questionnaire.

Results: Morphine immediate release 10mg tablet, 10mg/5ml syrup and 10mg injection are manufactured in Nepal as are prolonged release 10mg and 30mg tablets. Codeine (15mg tablet and 3mg/5ml syrup), Tramadol (50mg tablet/capsule and 50mg injection), Pethidine (50mg injection) and Fentanyl (100mcg injection) are also manufactured in Nepal. However, only one manufacturer produces all opioid formulations except Codeine and Tramadol tablet. Previously foreign manufactured formulations of these strong opioids were also available. Imported Fentanyl transdermal patches (25mcg and 50mcg) are available but in Nepal it is extremely expensive to use alternatively. To prevent misuse, distribution of Morphine, Fentanyl and Pethidine is made direct from drug companies to site pharmacies in 280 cancer, tertiary-care hospitals and palliative care units. Morphine is not available in many smaller and rural hospitals. All raw materials for morphine manufacture are imported from Europe.

Conclusion: Nepal manufactures and distributes a range of opioid medication including palliative care formulations of Morphine, however Morphine is not available especially in smaller centres. Systems need to be developed to ensure availability throughout the country. Better raw material import routes and Morphine manufacture by additional manufacturers are needed to ensure adequate and continuous supply.

Dr M.Bargaje¹, Dr Rutula.S¹, J.Londhe¹, Dr Kranti.R²,

Dr Nachiket.S², Prakash.F²

Bharati Hospital and Research Centre, Dhankawadi, Katraj, Pune- 411043, India ¹(medhabargaje@yahoo.co.in/9822790672, drrutula@gmail. com/9867453790, pulmorehabbharati@gmail.com/9881201838)

Cipla Foundation, Mumbai, India ²(Kranti.Rayamane@cipla. com/9833734514, nachiket.sule@cipla.com/9970265262,Prakash. Fernandes@cipla.com/9769064265)

Introduction: The symptom burden in patients with advanced-stage Respiratory Diseases(RD) is high, with 10.3% of RD patients requiring Palliative Care(PC) Intervention. PC Intervention shows improvement in symptom burden and quality of life(QoL). There is under-utilization of PC services. We present a case series of 3 patients with Chronic RD with PC needs.

Aim: To explore the benefit of PC in patients with Chronic Obstructive Pulmonary Disease(COPD) & Interstitial Lung Disease(ILD).

Method: We retrospectively analyzed the data of 3 patients(1 ILD, 2 COPD) from Pulmonary Rehabilitation(PR) Centre. These patients were administered Borg scale(symptom assessment), 6-minute walk test(6MWT) (functional capacity), and EQ 5D Quality of life(QoL) questionnaire(baseline and after 8 weeks of PR program). PC was provided when required.

Result: After optimal pharmacotherapy & rehabilitation, at baseline and after 8 weeks of PR program; Case 1(COPD; 68yrs/M) showed improvement in 6MWT(distance in meters: pre- 100; post- 240) & QoL(EQ 5D QoL Score pre-50; post- 95), and Case 2(ILD; 65yrs/F) showed no improvement in 6MWT(pre- 180; post 120) but improved QoL(pre- 40; post- 80) after PC referral, Case 3(COPD; 63yrs/M ) there was decrease in both 6MWT(pre- 270; post- 60) and QoL(pre- 80; post- 40), as PC referral was not possible due to social constraints.

Conclusion: PC management shows improvement in QoL in patients with decreasing functional capacity and increasing symptom burden.

Manoj Kamal, Jagdish, Divya Kumari, Yashwanath,

Bharat Paliwal, Jyotirmai Dhenwal, Nitesh Kumawat

AIIMS Jodhpur

Introduction: Palliative care has an important role in improving the physical and psychological state of the patient and their families and thereby increasing their satisfaction. Many time patients requiring palliative care are not attending the palliative care centers, hence home care is an integral part of palliative care. In providing palliative care at home, the volunteer’s faced various challenges. The aim of this study was to explore the hidden aspects of challenges related to home care in India.

Methods: A descriptive survey approach was use to explore the barrier faced by volunteers of home care. The recruitment of participants was undertaken by purposeful sampling methods. The study was conducted from April 2022 to September 2022 in the Jodhpur. Self-structured checklist was used to collect data from 30 home care volunteer who were providing home care. The data were entered in Microsoft spreadsheet and were analyzed by SPSS 22.

Results: Result show that majority of volunteer (78%) was male and majority of volunteer (75%) having less than 1 year experiences in home care. Regarding barrier 70 % volunteer show mild to moderate barrier when providing home based care and 18% show no barrier when providing care and only 12% of volunteer shows sever barrier when providing care.

Conclusion: Home care did less well in more complicated duties such as diagnosis and counseling. Creating a care regimen and offering resource assistance help to advance home-based palliative care. Furthermore, family education and volunteer training courses must be promoted. The quality of home care can be improved by making it easier for volunteer to do their jobs and hiring those persons who can deal with these challenges and economic incentives.

Keywords: Challenges, Home Care , Palliative Care, Home Care Volunteer

Priyanka Sankhla, Ramchandra Solanki, Jagdish,

Manoj Kamal, Rekha Gehlot, Yashwanath

AIIMS Jodhpur

Introduction: Palliative care is specialized medical care that focuses on people (old, adult)with serious illness by preventing and treating the symptoms. Palliative care is multi disciplinary approach to improve quality of life. Physiotherapy in palliative care aims to maintain and improve physical function, minimize or eliminate complications and decrease discomfort and pain.

Methodology: In Present study pre-experimental pretest -posttest research design was used to assess effect of physiotherapy to improve quality of life. Total 32 sample was selected by using purposive convenient sampling technique. The therapy took place three times a week for 2 weeks. Active exercise, Active assisted exercises, myofascial release and proprioceptive neuromuscular facilitation (PNF) techniques were all part of the 45 minute physiotherapy session. Self- structured questionnaire was used to collect data regarding quality of life. The data were entered in Microsoft spreadsheet and were analyzed by SPSS 22.

Result: Regarding result mean age of samples was 55 year ( SD= 2.4) and more than half of samples was (63%)male patient. Regarding effectiveness of physiotherapy 73%, samples improve their quality of life after physiotherapy. Regarding association, education of sample source significant association, evidence by Chi-Square test.

Conclusion: Physiotherapists use both the body and the mind to improve health and quality of life. Our data show that supervised physiotherapy should have started as soon as possible to improve some parts of Quality of life. Treatment teams face a challenge when it is hard to get cancer patients to exercise.

Keyword: Quality of life, Palliative care, Physiotherapy

Prathyusha Y V, Dean George

Hospice Psychologist, Sparsh Hospice, Hyderabad, India prathyushapsychology@gmail.com, deangeorge012@gmail.com

Introduction: Following a diagnosis of a terminal illness, caregivers are the second next group of people after patients who are adversely impacted. However, most of the time, patients receive all the attention. But there is always a need to understand the psychosocial status of caregivers that could affect their well-being.

Aim: This pilot study aims to explore the relationship between social support, subjective well-being and caregiver burden among caregivers of terminally ill patients.

Method: Purposive sampling technique was used to collect data (N = 80) from caregivers of both terminally ill in-patients and home-care patients registered under hospice and palliative care centres. The scales used to gather the responses were Multidimensional Scale of Perceived Social Support, Brief Inventory of Thriving, and Zarit Burden Interview. The results were scored and statistically analysed using a correlational design through SPSS software.

Results: Results revealed a significant correlation among all the three variables. Perceived social support from different sources play an important role in improving the well-being by minimizing the burden in caregivers of terminally ill patients.

Conclusions: The degree of caregiver burden varies from one person to another. Hence, considering the assessment of caregiver burden using standardized tools is necessary. These assessments can help the palliative care professionals to alleviate their burden by providing psychosocial support through respite care and thereby improving the quality of life of patients and caregivers.

Dr Sreedevi Warrier¹, Dr Reena George²

¹Pallium India, Thiruvananthapuram, ²CMC, Vellore, drsreedevi@palliumindia.org, reena.vellore@gmail.com

Aim: To ascertain the background and viewpoints of Indian medical faculty willing to introduce palliative medicine in the MBBS curriculum of their medical colleges.

Methods: A baseline questionnaire survey of the first three cohorts (n=64) of a five-day faculty development programme.

Results: Sixty-four participants of the Faculty Development Programme (33 female, 31 male; median age 38y) from 36 government medical colleges and 28 private medical colleges from 10 states of India responded to the survey (response rate=82.05%). 61/64 of respondents had National Medical Council recognized postgraduate qualifications in specialties representing all three phases of the MBBS course. These included Anaesthesia-14, Radiation Oncology-14, Community Medicine-12, General Surgery-4, General Medicine-4, ENT-1, Family Medicine-1, Oncology-1, Paediatrics-1,

Psychiatry-1, Respiratory Medicine-1, Pharmacology-4, Pathology-2, Physiology-2, Anatomy-1 and Hospice-1. These specialists had median of 8 years of teaching experience as medical faculty. Improving patient care was the highly-rated reason for wanting to teach palliative care. Over 50% said that this new initiative would be a very important teaching priority for them. Non-inclusion of palliative care in the MBBS examinations was rated as a most important barrier by 48% of respondents.

Conclusion: Faculty from a range of medical specialties across the country are interested in introducing medical students to palliative care. Inclusion of the subject in the MBBS examinations could add momentum to the integration of palliative care in medical education.

Anu Abraham, Raima Jose, Smita Rose

St. John’s Medical College, Bangalore

Introduction: To develop process and initiation of subcutaneous route of drug administration for symptom relief of palliative care patient.

Objective: The need of subcutaneous route of administration is finding to be very challenging in current days, because in most of the palliative cases with malignancy or prolonged hospital stays can lead to difficulty in securing intravenous line for management.

Method: Instructed the nursing staffs about the procedure regarding subcutaneous line insertion, discussion held with nurse in charges and quality control team for allocating a specific color coding for subcutaneous line so that can be differentiated from other parenteral routes.

Conclusion: Rationally it creates an awareness about the subcutaneous route of administration and its safety measures. It can be helpful for other hospitals those who are facing with similar issues.

Khushboo Dubey, Nandini Vallath, Sandhya, Matangi

St. John’s Medical College, Banaglore, India

Introduction: • At SJMCH inpatient palliative care team has been in existence since 2008. Still the palliative care team was not being utilized in an appropriate manner for ICU referrals and the instances in which team was consulted were usually only in cases of suspected futile care. • As per my understanding this underutilization of palliative care services in the ICU is consistent due to logistical issues such as protocols for patients’ selection, application models and lack of triggers for consultation of external experts.

Aim & Objective: • To improve the use of the palliative care team in the ICU and create overall awareness of basic ethical palliative care principles, to quickly identify patients who required early palliative care consultation by activating “Trigger” Tool in SICU and RICU Units. • To implement principle of justice advocating for fair and equitable distribution of ICU resources with standards of ethical medical practices to the patients who will actually be benefited with the use of the resources.

Materials & Methods: Designing a consensual tool with interdisciplinary collaboration of ICU Specialists, treating physicians, palliative care team and

Nursing In charge, based on following Guidelines: • Palliative care screening tool (PCST),9,10.NY,USA,2007 • Appraisel of Guidelines for Research and Evaluation (AGREE II) • Clinical Practice Guidelines (CAGs) • Guidelines Offered by Centre of Advanced Palliative care (CAPC) Selection of patients will be done from Respiratory (RICU) & Surgical ICU. Sample size will be 10 patients each from both the ICU’s. A first tryout tool will be designed and distributed in RICU & SICU based on which a trigger will be initiated by residents ,intensivists and treating team for the patients who is need of palliative care based on tool criteria for trial base for 30 to 45 days. After initial assessment the gaps, limitation’s and efficient functionality of the tool will be re-evaluated by conducting interdisciplinary meetings between Intensivist’s ,Treating team, Nursing staff and palliative care team and a final consensual ’’trigger tool” with be initiated after rectifying all the gaps and limitations of trial tool.

Result & Conclution: • Ideally All ICU patients should receive early palliative care screening with regards to setting goals of care based on ethical principles ( autonomy, beneficence, nonmaleficence, justice and fidelity) for symptom management, shared decision-making, continuity of care, the protection of patients’ autonomic rights, even for those who have lost their decision making ability. • By implementation of “Trigger criteria protocol” based on Palliative care screening tool and advocating principles of “care and communication bundle” (As per national quality measures for heath care research and quality) I expect at least 70 percent patients can get early palliative care referrals from the ICU.

Vinutha Suresh, Dr. Daniel Raj J, Dr Shobha Devaji Patil

Cancer Institute (WIA), Adyar, Chennai 7358517317, vinutha.suresh@gmail.com

Introduction: Psycho-social issues in cancer patients are multifactorial and include distress due to the diagnosis of a life limiting illness, symptom burden, disruption of normalcy in life, guilt of burdening the care giver, financial inadequacy, lack of social support and place of care.

Aim: The objective of this case report is to describe the role of hospice in reducing the distress in a cancer patient.

Methods: The National Comprehensive Cancer Network (NCCN) distress thermometer is a routinely used screening tool to measure the distress in cancer patients. Patient reported NCCN distress scores were measured during every visit and the key areas of concern were identified from the problem list. Psychoeducation and counselling were given to address the areas of concern.

Results: The reasons for distress were early disease recurrence, pain, financial inadequacy, and poor social support. During the counselling session, the patient was referred to hospice care where symptom control and supportive care were provided free of cost and no caregiver is required. The distress score elicited from the patient during the initial visit was 6/10. Following admission to the hospice, the distress score decreased to 3/10.

Conclusions: Hospice care played a crucial role in alleviating psychosocial distress in this patient.

V Prameela, Mathew S, Siew A, Macaden SC

Bangalore Baptist Hospital, Banaglore, India

Introduction: Home is generally considered as the best place for terminally ill patients to die peacefully. Palliative home care team plays an important role in achieving this. Families are equipped, helped, guided, and empowered towards this.

Aim: To determine whether families who cared for their loved ones until death at home, are satisfied and managed well with the help of palliative home care.

Method: The interview was conducted telephonically and one to one. The questions asked were who made the decision, were they equipped enough to provide care at home, were they able to manage, did they have the satisfaction that they took care at home, and were there any other challenges towards the end,The data during the interview has been collected and analyzed.

Results: Out of 40 people, 32 (80%) people said that they were prepared to face challenges while their loved one was dying and 6 (15%) were not prepared. 36(90%) said they have satisfaction in caring for their dying loved ones at home. 34(85%) expressed that they don’t regret not taking their loved one to hospital at the end.

Conclusion: Caring for their loved one at home till the end has given a great satisfaction to the family. Palliative home care team equipped and empowered the families to care well. A good and clear understanding of the patient’s health condition and learning of specific skills to care were the key factors for the families to cope well with the situation.

Revathy Vijaykumar, Shunmuga Priya IC

AIIMS Delhi

Introduction: ‘Palliative care is an approach that improves the quality of life of patients with life-threatening illnesses, and their families through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical psychosocial and spiritual’ As per many studies published, home is the place where most people would prefer to die. In this prevalence study, we aim to assess the causes of mortality in an oncological palliative care unit/ward. The study of these patterns of mortality might aid in better prognostication and might also help to know causes that make home care difficult for caregivers.

Aim: To find the causes of mortality of patients admitted in an oncological palliative care unit.

Method: Period prevalence study - cross sectional study, from January 2020 to January 2023. All patients included in inclusion criteria, The study will be conducted in the palliative medicine ward of AIIMS, New Delhi and NCI, Jhajjar Inclusion Criteria: • Age > 18 years • Patients with terminal cancer on best supportive care who have died while being admitted in a palliative care set up.

Results and Conclusion: Data under evaluation currently. With the prevalence data, the common causes of patient mortality in palliative care may be identified, which might provide helpful in identifying dying patients and might also aid in better prognostication in last few days to hours of life.

Narinder Gautam¹, Pallika², Anu Paul³, Tushti Bhardwaj⁴

¹Mr. Narinder Gautam, Counselling Supervisor, CanSupport, Delhi, PH:9891206455, ngautam638@gmail.com

²Ms. Pallika, Counselling Supervisor, CanSupport, Delhi, India, PH; 9871312205, pallika1970@gmail.com

³Ms.Anu Paul, Deputy Director Counselling, CanSupport Delhi, PH: 9313268674, qmru_counselling@cansupport.org

⁴Prof. Tushti Bhardwaj, Professor, Department of Social Work, Dr. Bhim Rao Ambedkar College, University of Delhi, PH: 9711474047, tushti. bhardwaj@bramb.du.ac.in

Theme: TRACK 3: Oncology Palliative Medicine Subtheme: spirituality

Introduction: Patients suffering from terminal and life-threatening diseases like cancer tend to give various meanings to their disease which may give emotional turmoil to the patient if remain unaddressed. Thus, understanding the spiritual concerns of the patients is important to smoothen their struggle with cancer and contribute to improved quality of life.

Aim: To understand spiritual concerns of cancer patients receiving palliative care services.

Methods: A systematically selected sample of 1486 patients who received services from CanSupport palliative care teams between April 2019-March 2020 was included for data collection. Spiritual concerns using a check list were observed by the counellors during a series of service delivery sessions. In addition, patients verbatim about their spiritual concerns were included. Data was managed by MS Excel and imported to SPSS for quantitative analysis, qualitative analysis was performed manually.

Results: Mean age of the patients was 54.82(SD 15.378), 818 male and 668 females, 48% were reported to CanSupport at stage IV, another 20% at stage III, 60% of them belonged to lower socioeconomic strata. Major concerns of the patients in order of rank were sadness (89%), Being angry with God (25%),Anger(25%), why me (23%), Self-image(22%) and dignity (21%). It was interested to note that CanSupport service model helped 76% patients to accept their disease and 61% were hopeful to happily live the remaining days. Permission to die or preparing for death was noted among 16% of the patients.

Conclusion: Future interventions are required to address unmet concerns namely sadness among cancer patients and preparing them for acceptance of the death.

Dr Divya Sai, Dr Praneeth Suvvari, Dr Praveen Kumar

Basavatarakam Indo American cancer hospital, Hyderabad Email: vanumu.divyasai@gmail.com, praneethsuv@gmail.com, drprawin78@gmail.com

Introduction: Treating cancer related pain is a dynamic process requiring flexibility from clinicians & drug delivery systems. One of the most feared symptoms during death is pain and its prompt assessment & appropriate management is lacking.Especially due to overwhelming symptom burden where pain is overlooked.

Aim: To evaluate prescription pattern of analgesics drugs in actively dying cancer patients

Methods: This is a prospective study in which 66 actively dying (AD) cancer patients admitted in the Palliative care ward were recruited.Their pain scores are calculated using assessment tools - conscious (NRS), unconscious (FLACC- R) at the time of admission & at AD phase along with their preferred routes of admission. Clinical judgment is solely by palliative consultant & data assessing doctor is not included in the treating team. Data will be analyzed using SPSS 25.0. The study is ongoing.

Results: At the time of admission, 37% of the study population had moderate to severe pain score whereas in AD it is 18%. On admission, • 22% weren’t on any analgesics, • 15% patients in step 1 of WHO step ladder were escalated to 60% in the AD phase, • 15% on step 2 escalated to 70%. In AD phase, • 74% of the total population are on step 3, • De Escalation seen in 7.5% 48% of opioid naive patients required a dynamic shift to a strong opioid during their end stage.

Conclusions: Pain score at the actively dying phase does not correlate with analgesic escalation,as the need for strong opioids for distressing symptoms like shortness of breath outweighs pain during the actively dying phase.

Reference

1. Bethann Scarborough, Cardinale B. Smith, Optimal Pain Management for Patients with Cancer in the Modern Era.CA Cancer J Clin. 2018 May; 68(3): 182-196.

2. Ankur Sinhal; Himanshu Deshwal2; Rishik Vashisht.End Of Life Evaluation And Management Of Pain

3. Dr Michael Platt. Pain Management at the End of Life.Rev Pain. 2010 Oct; 4(2): 18-23

Dr Divya Sai, Dr Praneeth Suvvari, Dr Praveen Kumar

Basavatarakam Indo American cancer hospital, Hyderabad

Email: vanumu.divyasai@gmail.com, praneethsuv@gmail.com, drprawin78@gmail.com

In the modern era of medicine & advancing treatment strategies we have come so far, trying to find maximum cure & care.Similar to other children, adolescent females have problems specific for their age & developmental peculiarities. This transition is uneven, which results in an earlier physical maturity & reproductive capability, than a psychological & social maturity. We report a patient 15 year old girl, diagnosed 3 years ago with ALL, post chemo, radiation(RT), post bone marrow transplantation(BMT), now diagnosed with Nasopharyngeal carcinoma, ongoing chemo, referred to palliative ward for analgesic needs.The child had unbearable headache.A CT scan of her head & neck revealed progressive disease.Alongside high-dose opioids she was considered for Palliative RT to head & neck.But the child was refusing to RT. Despite that, the parents also insisted we go ahead with the treatment, by the end of her radiation her pain levels gradually subsided. When asked the child why she refused radiation, there was a history of whole body radiation before BMT, for which she had to lie naked over the radiation table. All that I could see as a doctor was trying to get my patient irritated, but from a girls point of view that too an adolescent with pre pubertal body changes, she was on the table feeling shy, unable to express & people around looking at her. She was emotionally hurt that no one ever thought or emphasized the situation. Certain minute things leave deep wounds over young minds which have to be kept in mind especially in young females, a proper screening and counseling would help identifying vulnerable age groups.

Reference

1. Gayathri hema aradhya.Psychosocial Morbidities in School Going Adolescent Girls: A Study from a South Indian City.2013 Apr; 7(4): 684-686.

Bhargaviba Jadeja, Jagdish P, Arvind Kumar S,

Ramswaroop G, Srikanth S, Manoj Kamal

AIIMS Jodhpur

Background: Volunteers are an integral part of palliative care services. As manpower is one of the important resources needed to reach out to a huge volume of patients needing palliative care, it is necessary to select quality volunteers.

Aim: To identify and train volunteers for home based palliative care

Methodology: A total of 12 sensitization programs on palliative care were conducted for hospital ward attendants, nursing officers and nursing students from nursing colleges around Jodhpur between April and September 2022. Topics covered were on overview of palliative care and pain management, the role of volunteers in palliative care and sharing experience faced during home visits.

Results: Of the 586 participants who attended the programs, 159 (27.1%) participants expressed their interest in further training and got enrolled as volunteers in palliative care. Further three 16 hours structured training programs for 80 volunteers have been conducted. The content included communication skills, emotional support, patient assessment, nursing care, home care, basics of symptom management and reporting to a higher level. They underwent training to identify chronically ill problems in their area and intervene appropriately and have started accompanying our home care team. The experience of the volunteers will be assessed periodically.

Conclusion: This community approach is a realistic model to extend the range of palliative care services.

Background: Chronic debilitated patients who need a long term care and patients with life threatening illness like cancer prefer to be cared in a familiar environment. Home based palliative care is an ideal strategy to address the problems of such patients.

Aim: To implement a home based model of palliative care services in Jodhpur.

Methodology: A home care team comprising of a palliative care trained doctor, nurse and social worker has been providing services to patients recruited from the Pain and Palliative care unit and referrals from other clinical departments of AIIMS. A comprehensive assessment on physical, psychosocial, spiritual problems and QOL using FACIT-PAL, WHOQOL BREF and Caregiver Stress tools is being carried out for patients and caregivers

Results: During the period March-August 2022, a total of 67 patients ( 97.1% cancer) have been enrolled. Total number of home visits made were 72. Average number of visits per month was 14 and each patient on an average was visited twice (range:1-8). Six bereavement visits have been made. About 44% of patients were on routine chemotherapy with / without morphine. About 56% were only on morphine and adjuvants. Sensitization programs are being conducted for various cadres of health care workers of AIIMS and PHC Medical Officers of State Government. Economic Rehabiltation for 3 caregivers were provided through financial aid from volunteers. A significant reduction of stress (p<0.05) among carregivers has been observed.

Conclusion: This model will encompass the services of both AIIMS and Government health delivery system in future for sustainabity.

Poojitha.MSW, Renuka. GNM, Dr Gayatri Palat. MD,

Dr Archana Iyengar. DCh. DNB, Dr Jagadish. DCh,

Dr Ishaq. DCh.

Introduction: MNJ Institute of Oncology & RCC is 500 bedded tertiary referral center for both the states of Telangana and Andhra Pradesh. MNJIO&RCC has a dedicated 100 bedded pediatric oncology ward for cancer treatment. Support group meetings are conducted to a group of people with similar disease or concerns who help each other cope by sharing experiences and information.

Background: Children with cancer often undergo long standing treatment and prolonged stay in the hospitals. During this time the children’s and families undergo enormous amount of stress related to cancer treatment, longer hospitalization, financial burden, losing their lively hood, staying away from siblings, Stay, social and emotional distress etc.

Methodology: MNJIO&RCC has a unique paediatric palliative care providing palliative care to children right from the beginning of the diagnosis with a multidisciplinary team consisting of PPC consultant, staff nurse, medico-social worker and physiotherapist. PC team conducts support group meetings to the children and family every week in addition to the individual sessions for these children and their families.

Study Period: July 2022 to January 2023.

Results: Common themes which came up during the support group meetings are concerns regarding child’s disease, siblings’ education, financial burden on the parents, procedural pain during treatment and investigations like repeated cannulation, bone-marrow and intrathecal, lacking of clarity regarding cancer treatment, is cancer contagious evolved during the discussion.

Discussions: Support group meetings helped us elicit their concerns, provided a platform to expressions their emotions, share their experiences and vent out distress.

Conclusion: support group meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and care givers in relieving their burden to some extent.

Dr.Aakash Hinduja, Dr.Praneeth Suvvari,

Dr.K Praveen Kumar

Basavatarakam Indo-American Cancer Hospital, Hyderabad. Email-aakashhinduja05@gmail.com, praneethsuv@gmail.com, drprawin78@gmail.com Phone: 7032944636, 9814686999, 9959893915

Introduction: Various methods have been in practice for drainage of ascitic fluid at home. In our institute, it is a regular practice for terminal cancer patients with ascites to undergo pigtail insertion for home based management. They are easily available but have risk of pericatheter leak, blockage of catheter and catheter dislodgment. Indwelling Tunelled Catheters (ITC) also have been used in west for managing Malignant Ascites at home and can be left insitu for the rest of their life. There are no comparative studies between both methods.

Aims: We aim to compare the incidence of side effects (pericatheter leak, catheter site infections, dislodgment, blockage, catheter site pain), ease of drainage, patient satisfaction between both methods.

Methods: This is a prospective randomised open labelled study. Patients are referred for placement of catheter after decision of the primary physician. 20 patients will be posted in each group after randomization. Patients will followed up on 2^nd POD in person and subsequent weekly visits via video consultations or in person if available. Data will be analyzed descriptively and statistical analysis will be done using SPSSv25. The study is still underway.

Results: Till date 10 patients underwent Indwelling Tunelled Catheters placement and 4 patients had pigtail placed. Results are yet to be compiled.

Conclusion: Our analysis is still ongoing. But the early results have shown better ease of drainage and low incidence of side effects with Indwelling Tunelled Catheters.

References

1. Narayanan G, Pezeshkmehr A, Venkat S, Guerrero G, Barbery K. Safety and Efficacy of the PleurX Catheter for the Treatment of Malignant Ascites. J Palliat Med. 2014 Aug 1;17(8):906-12.

2. Tapping CR, Ling L, Razack A. PleurX drain use in the management of malignant ascites:safety, complications, long-term patency and factors predictive of success. Br J Radiol. 2012 May;85(1013):623-8.

3. Suvvari P, Nair A, Mantha SSP, Saifuddin MS, Naik V, Rayani BK. Management of Malignant Ascites by Indwelling Tunnelled Catheters in Indian Setup: A Case Series. Indian J Palliat Care 2021;27:350

4. Analysis of Effect and Prognostic Factors Associated with Catheter Intervention on Ascites in Terminal Cancer Patient Mungsun Jang, M.D., Chul-Min Kim, M.D., Ph.D., Johi Yoon, M.D.*, Jung-Ran Nah, R.N., Ph.D.*, Seung-Nam Chang, R.N., Ph.D.*, Myung Ok Kim, R.N., Msc.* and Ja Young Lee, M.D. Departments of Family Medicine, *Palliative Medicine, Seoul St. Mary’s Hospital, College of Medicine, The Catholic University of Korea, Seoul, Korea

Sunu Merla¹, Arun Marath², Dr. Priya Treesa Thomas³

¹M.Phil Scholar, Department of Psychiatric Social Work, NIMHANS,

Bengaluru- 9442180297/ sunu.merla@gmail.com

²Ph.D Scholar, Department of Psychiatric Social Work, NIMHANS,

Bengaluru- 9946680294/ arunmarath24@gmail.com

³Additional Professor, Department of Psychiatric Social Work, NIMHANS,

Bengaluru- priyathomasat@gmail.com

Introduction: Health is one of the ultimate requirements of human life which every human life on earth strives to achieve. Neurological conditions in children can be either congenital or acquired and they require accurate diagnosis and treatment at the earliest. Conditions can also be life limiting and chronic and are associated with a huge amount of psychosocial factors. The nature of the child’s illness can have significant effects on the family as well. Several of the conditions have a prolonged and declining illness trajectory with high support needs that need to be met by the family. We present two case reports where children were diagnosed with a progressive pediatric neurological illness requiring long term care.

Aim: To understand the psychosocial care needs in children with progressive life limiting neurological disorders receiving IP care.

Methodology: The present paper reports two cases who presented with unique care needs and challenges. The children and the primary caregivers (parents) were interviewed as a system to understand the care needs and to support them in developing a care plan.

Case 1: 9 year old female child with a diagnosis of Pantothenate kinase- associated neurodegeneration (Neurodegeneration in the Brain with Iron Accumulation) from a low socio-economic status in rural Tamil Nadu.

Case 2: 9 year old female child with a diagnosis of epileptic encephalopathy and regression of milestones from a low socio-economic status in rural Karnataka.

Results: Several unique challenges that are specific to the clinical situation of the children as well as some generic challenges that the family face when confronted with the illness of the children were elicited. Significant psychosocial issues exist across various domains in the parents and the children. This included concerns regarding the illness, inadequate availability of resources, stress in the caregivers and the children across a variety of areas. ‘What is going to happen to the child in future’ was a common theme. Several discussions were around the challenges in care with uncertain support needs and limited resources.

Conclusion: Changes caused by the illness would be highly challenging for the child and his or her parents. A child and his/her parents with inadequate resources to manage this would end up in a completely disrupted family equilibrium and poor wellbeing. Further themes, proposed interventions and Implications for policy will be presented.

Keywords: Pediatric neurology, psychosocial factors, chronic and life- threatening illness.

Priya Baby, Jobi Mol, Priya Tereesa Thomas

NIMHANS Banaglore, India

Introduction: Tongue spasticity, oro-facial muscle weakness and palatino- lingual muscle weakness contribute to sialorrhea in ALS. Understanding the prevalence and extent of sialorrhea in ALS patients can help us understand the need for nursing care related to drooling.

Aim: We conducted a cross sectional survey to estimate the prevalence and extent of sialorrhea in patients diagnosed with ALS.

Methods: ALS patients enrolled in the Neuropalliative registry of a tertiary Neuro-hospital and who sought care from December 2021 to March 2022 were included in the study. Telephonic interview was conducted with the patients or the next of their kin as a part of the regular follow up. The Sialorrhea Scoring Scale (SSS) was used to measure the extent of the symptom in the patient.

Results: A total of 70 patients were included in the study. The mean age of the patients was 51.8 (SD 12. 8) years. Majority of them (74.3%) were males. Twenty eight (40%) patients had some sort of impairment related to saliva or drooling. While 15 (21.4 %) patients had mild drooling, 9 (12.9%) had moderate , 2 (2.9% ) had severe and 2.9% had profuse drooling. Nine (12.9%) patients were on anticholinergic drugs. Patients with bulbar onset

ALS had significantly higher sialorrhea than the patients with limb onset ALS(p=0.008). Longer duration of illness positively correlated with severity of sialorrhea (r=.30, p=0.12).

Conclusion: Sialorrhea is a common problem encountered among patients livings with ALS. Palliative care services should address this issue in the models of care.

Note: IEC approval was obtained for the study

Nandini. Bsc N, Mounika. B.sc N, Anuradha MSW,

Mr. Swarup Nsg Spdt Dr. Gayathri Palat.MD,

Dr Jagdish D.Ch.

Mandara childrenHospice is the first pediatric palliative care center of its kind in India started in May 2021with a10 bedded unit.

Goal of Admission: Symptom management, EOLC, Respite care and transition care.

Aim: To share experiences of created legacy and memories of the children under palliative care with their family members.

Introduction: In palliative care moments shared of the child with the families in the last few days and hours is very precious and memorable. The PPC team helps the family in doing so and also reinforces its importance during the stay at the hospice. To share the memories of the lost and create the environment of touch and presence helps in better coping and supporting complicated grief.

Category of patients: • Memory making made for EOLC children. • Play therapy and activities for active, alert and oriented children. • Fulfilling wishes like: Future ambition, Birthday celebration of children and their family members, Rangoli, Mehndi, Naming ceremony, favorite places, Food, Clothing Etc.

Consent was taken from the parents

Result: Clay, art-papers, colorpapers, water paints, cakes and candles, moldings, bubbles, pictures, hairlocks and toys, videos etc were used in gathering the memories.

Impact: Heart touching experience of parents on receiving the gift of making.20Parents feedback was recorded and screenshots taken through the WhatsApp.

Challenges: Few families didn’t feel the importance of the making and few refused to give consent.

Conclusion: Many families shared positive feedback during the bereavement follow up and held these moments that were captured close to their hearts.

Dr. Karthikeyan T PhD, DSC, Dwaraknath

Physiotherapist, NIMHANS, Bangalore-29.

Introduction: Physiotherapy treatment plays a significant role in post operated cervical ependymoma condition especially to restore motor & functional recovery.

Objectives: This study identify and find out Physiotherapeutic effects of graded exercise on post- operative ependymoma. The investigator identified and present with motor, sensory and other nonspecific symptoms like pain. We present a first case at NIMHANS hospital Bangalore. A 6-year-old female child with initial symptoms of difficulty walking or maintaining balance, weakness,pain at the tumor site, loss of bowel or bladder control, loss of sensation, vision, hearing, smell and taste. Post -operative patient child who developed quadriparesis, gait ataxia and pain over cervical region and forceful contractions of the left upper limb. Patient undergone different hospital and undergone for further management. The methodology used here clinical therapeutic outcome scale of FMS administered. Results shows that at the time of admission the scale score 1.After post-operative FMS score 5(p<0.5By 6 weeks’ postoperative, she was ambulating without support. This study concluded that physiotherapy management 6 weeks duration of graded exercises, incentive spirometer, Gait, Balance, coordination, posture correction exercise which help to increase muscle strength, Range of motion flexibility, overall health, wellbeing, livelihood, quality of life for the management of postoperative ependymoma.

Keywords: Post -operative cervical Ependymoma, Physiotherapy,

Quadriparesis and FMS.

Ms Fidha Naseem, Dr Narayanankutty Warrier,

Dr Uma V Sankar

MVR Cancer Centre and Research Institute, Khozikode, Kerela

Introduction: Understanding how the bonding between a carer and an advanced cancer patient helped each other to effectively deal with their difficult times remains an unexplored area in Indian culture.

Aim: The purpose of this study is to explore the factors that promote the quality of death and quality of life of advanced cancer patients and their caregivers.Methods: Interviews with advanced cancer patients, their primary carers (n=6), and those of patients who have passed away (n=5) were conducted using a semi-structured interview. The qualitative data was analysed using thematic analysis.

Result: The following four primary themes emerged as a result of the research: (1) Importance of communication (2) Bonding between patient and caregiver(3)Understanding of the situation (4) Acceptance of the situation.

Conclusion: Regardless of the patient and carer relationship, mutual understanding and acceptance, adequate information about treatment and medical aspects, and open communication about unmet needs helped both an advanced cancer patient and their carer to manage the difficult situation. After a patient dies, carers reflect on their memories of their loved one and wish they could have done this or that, or changed something during their caregiving. Understanding that there are certain common thoughts and feelings that these carers would share, it is important to note that what carers of already deceased patients believed should have helped the patient during their final months should be incorporated into the lives of currently advanced patients to make their last goodbye a lot more comforting.

Keywords: Advanced cancer, Communication, Quality of life, Quality of death, Thematic analysis.

Amy Siew, Rebekah Zechariah

Bangalore Baptist Hospital, Banglore, Karnataka, India Email: amy_raichur@hotmail.com

Introduction: With increasing life expectancy, the prevalence of chronic health conditions increases leaving many older people (above 60 years) more home bound and less able to access medical care. Domiciliary health care is a good option for older persons with multi-morbidity and poor functional status.

Aim: To understand the need for home health care services for patients visiting the geriatric clinic in a tertiary-level mission hospital; to determine these patients’ functional status and types of services requested.

Methods: This study was a prospective needs assessment employing a pen and paper survey with a questionnaire, recruiting patients aged 60 years and above visiting the geriatric outpatient clinic of a hospital. The data collected was analyzed with SPSS.

Results: 30 (22 men and 8 women) of 100 people wanted home care services. Over 60% were well educated with minimum degree qualification. Convenience of care at home was the main reason for requesting home care while some cited difficulty in coming to hospital. Most had chronic conditions, taking four to seven medications daily, while being fairly functional. The most requested service was doctor check-up (86.7%). Other services like blood pressure or blood sugar check and laboratory tests were also requested. More than half (56.7%) wanted services only at request, while 40% wanted monthly visits.

Conclusions: Although a fairly significant number of respondents (almost a third) wanted domiciliary care, many wanted this mainly for the convenience. In resource-limited settings, careful selection of patients, who truly need this service, will be required.

Sanjay Kumar, Anil Agarwal, Prathiba Singh

Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, India

Introduction: Pain is a common and devastating complaint of cancer patients. It enhances the overall suffering of these terminally ill patients. A proper address to this physical symptom requires the combined management from various specialities. Etiologies of pain in cancer patients are numerous, including, but not limited to, the local invasion of tumor, the complications (1).

Aim: A proper assessment of all possible causes is needed to plan a multimodal treatment to assure a maximum possible relief to these patients.

Method/Case brief: A 44-year old female of metastatic breast carcer pesented to palliative care OPD with the right lower back pain VAS of 80/100 since 3 months. Tenderness over the right iliac crest just posterior to anterior superior iliac spine (ASIS), radiating down the leg. A bone scan showed increased tracer uptake in multiple joints including pelvic bone and femur. Trigger point neutralization under ultrasound guidance at the origin of tensor fascia lata (TFL) The patient was discharged after 1 hour of with advice of drug and physiotherapy with of lower limb and gluteal muscles.

Result: Immediate post procedure VAS was 10mm. She was pain free on subsequent follow ups at 2 and 4 weeks with VAS of 0-10mm and DSM-IV were 15 and 11 respectively.

Conclusion: The case report suggests that accurate and earliest clinical diagnosis along with trigger point injection treatment of myofascial pain syndrome could be one of the adjuvants in pain management of cancer patients at any step of WHO ladder algorithm.

Sapna Krishnamurthy, Imtiyaz Ahmed

KLES Prabhakar Kore Hospital, JNMC, Kaher, India

Introduction: In clinical practice constipation is a very common symptom in patients with head and neck cancer who are on Radiotherapy (RT), but most of the time unattended due to anatomical non-proximity and poor insight into symptom management. Unrelieved constipation causes vicious cycle of pain, discomfort, and poor oral intake, leading to non-compliance to RT.

Aim: Adequate management of constipation in at least 65% of patients with head and neck cancer who are on RT.

Methods: In a standard based audit design, initial retrospective audit was conducted from July 2021 to September 2021 in patients with head and neck cancer undergoing RT, to recognize the symptom burden of constipation and time to relief. We implemented ESMO clinical practice guidelines for management of constipation (flow chart) and re-assessment data was collected with respect to symptom management in the next three months prospectively.

Results: Comparing the results of initial versus re-assessment, out of 48 and 44 patients, 32(66.6%) and 26(60%) had constipation respectively. As per the flow chart, documentation of relevant history, documentation of concurrent use of constipation causing medications and patient review were done in none of the patients in the initial assessment as compared to 92%, 92% and 77% respectively after implementation. Mean duration to report constipation was 5 days versus 2 days and mean number of days for symptom relief was 7 days (range: 7-10) versus 2 days (range: 1-6) respectively.

Conclusion: Early recognition and active intervention by following the guidelines help in prompt relief of constipation in these patients.

Srikant Atreya, Shrikrishna Mondal

Tata Memorial Centre, India

Introduction: The imbalance between the demand for and availability of palliative care can be overcome by empowering primary care teams across hospitals and community clinics. With this intent under the NPPC, palliative care training has been disseminated across district and subdistrict hospitals and the community.

Aim: This study aims to present data on the interim analysis of the state of palliative care delivery in the district and subdistrict hospitals in West Bengal.

Method: Necessary approvals were obtained from the Director of Health Service, West Bengal. A qualitative exploratory focus group methodology was adopted to gain a wide range of views from stakeholders, their reflection on the existing palliative care service, and identify facilitators and barriers to disseminating care. Four district hospitals, comprising 24 participants, were selected. The participants included the medical superintendent, CMOH, medical officers and nurses trained in palliative care, and an epidemiologist looking after palliative care. The FGD was conducted in November and December 2022, with each discussion lasting 60 minutes using a pilot tested semi-structured interview guide. Data analysis followed constructivist grounded theory.

Results: The following themes emerged from the interviews that were considered important for sustaining the program: cohesiveness of care, interdisciplinary team coordination, well-structured referral systems, amicable collaboration between teams, the need for ownership of the program, ongoing refresher training for attitude and behavioural change, and empowerment of society.

Conclusion: The stakeholders believed that the value and sustainability of the program could be enhanced by the well-orchestrated efforts of multidisciplinary team members.

Mujeeb Kuttamassery

Lifecare Foundation and Central Council Member of IAPC

Introduction: The first phase of the pandemic is still hard to recall for many among us. Many among us struggled to find hospital beds and cremation spaces to bid goodbye to our loved ones. Here is a recollection of a palliative care volunteer from Kerala who had to witness a strange experience. He has cared for several dying patients, but this patient was extraordinary.

Methodology: Reflection and Personal Diary.

Results: Patient Mr ANR (63), Cancer belonged to Adi Sankaracharya lineage(Hindu) and hailed from Delhi. The cancer diagnosis forced his family to move to his native in Kerala. During the first phase of the pandemic, he was on treatment in Kerala. Later he had covid, which took his life. His mortal remains were kept alone as his wife was positive for covid-19 and was in quarantine with their only daughter. They could not, therefore, do the last rites of him. When the dear and near ones were in a very traumatic situation, unable to offer the funeral rites of their departed one, Mr X(Muslim), ably supported by his team members drawn from different social backgrounds, volunteered to perform the rituals and ceremony on behalf of the family members. His wife witnessed the whole pooja from a covered vehicle while Mr X performed the last rites according to her instructions.

Conclusion: Such stories of endless kindness need to be showcased as they may motivate fellow volunteers in palliative care. This is also proof of the roles played by the volunteers in palliative care and why they are the essential building components of any compassionate community.

Deepak Sudhakaran, Rajalekshmi Balu, Sreedevi Warrier

Pallium India

Introduction: Palliative medicine is a multidimensional and interdisciplinary academic discipline, which addresses various unmet needs of patients and their families. With limited access to specialists in the field, it is necessary to regularly equip physicians with evidence based new perspectives, insights and knowledge in palliative medicine.

Aim: To study the effectiveness of a virtual refresher course in palliative medicine.

Methods: A relevant curriculum was developed and experts were chosen to provide a global and national perspective of the enlisted topics. A detailed end evaluation was done among the participants to know their confidence level in assessing and addressing various common clinical and nonclinical aspects of palliative care before and after the training program. SPSS was used to analyse the data.

Results: Of the two training programs conducted virtually, 95 palliative care physicians attended. The completion rate was found to be 81.05% and 66 end evaluation responses were received. A statistically significant improvement in confidence levels was observed. An average of 2.6 points increase in confidence levels was reported in addressing respiratory, neurological, cardiac and cancer related issues, understanding the nature of loss, grief and bereavement, prescribing methadone and difficult communication.

Conclusion: The virtual training programs is a time, travel and cost effective way to improve competence in providing good quality palliative care. Among the verbal and non-verbal feedbacks received, the requirement of such refresher course was clearly perceived.

Pragyat Futela¹, Abhinav Singhla²

¹Maula Azad Medical College, New Delhi,

²Mayo Clinic, Rochester, UK

Intro: Disclosure of prognosis by doctors to an adult patient undergoing end-of-life care has been an essential practice since “A Patient’s Bill of Rights” was established in 1973. However, the approach to the patient is generally “paternalistic” in India as the concept of autonomy is weak in the prevailing cultural ethos.

Aim: We report a case of a patient with metastatic breast cancer with whom discussions of end-of-life wishes could never be initiated prior to sudden deterioration of health.

Method: 76 years old woman with a history of breast cancer was admitted for dyspnea. She was diagnosed with malignant pleural effusion and needed multiple thoracentesis. She was unaware of her prognosis because the family members wanted to avoid emotional distress. Her life expectancy concerns were dismissed by reassuring her of positive outcomes. Subsequently, her level of consciousness declined, and she died due to septic shock.

Result: The reasons for not disclosing the prognosis to the patients from their family’s perspective are rooted in nonmaleficence. The concern is the psychological impact on the patient after breaking bad news. Literature review found effective communication, when used as a disclosure strategy, had no or beneficial effects on patients’ psychological well-being and satisfaction.

Conclusion: Medical training is based on guidelines of medical ethics and lacks the acknowledgment that the practice of non-disclosure is quite prevalent. Hence, there is a need for clinical practice guidelines that help future healthcare professionals deal with ethical dilemmas surrounding prognosis-based communication with patients.

Ishita Gandhi

CanSupport, India

Introduction: A malignant fungating wound presents with a cluster of symptoms such as malodor, heavy exudate, pain, bleeding, and various psychosocial issues. To stabilize and prevent wound deterioration, the physical and bioactive properties of honey may have potentials to be applied as wound dressings to manage foul smell and heavy exudate.

Aim: A case report which shows improvement in malignant fungating wound of a patient with Kaposi’s sarcoma with regular honey dressing.

Methods: A 74 year male patient diagnosed with Kaposi’s Sarcoma (non- retroviral) in January 2022 presented with a large fungating wound on the plantar and lateral surface of right foot and severe pain. On examination, he had a large wound (15*6 cm) with large amount of serous exudates, malodor, and slough tissue over right plantar surface. The wound was being cleaned with betadine 2% solution and Silver sulfadiazine dressing was being used which proved ineffective. Patient was started on opioid analgesics for pain and wound management was done. After cleansing and rinsing with normal saline, regular honey was applied directly on the wound and dressing done, which was changed daily.

Results: The patient showed a good response. The necrotic slough tissue was gradually debrided and the odor was eradicated. In addition, the antiinflammatory effect of the honey provided an analgesic effect, resulting in decreased pain associated with the wound itself and the dressing change procedure. There was significant improvement in character of the wound by the end of 4 weeks with daily honey dressing.

Conclusions: Honey can be chosen as a safe and effective material for dressing of malignant fungating wounds in cancer patients in palliative settings.

Pheroza J Bilimoria, Dr. Kalpesh Jain

PALCARE -The Jimmy S Bilimoria Foundation, Mumbai/ India,

+ 91 -022- 24700484/ 485, contact.palcareindia.com, 7C, Trust House, Next to Global Hospital, Dr. E Borges Road, 35 Hospital Avenue, Parel, Mumbai 400012, India.

Category, Track 3 - “Oncology Palliative Medicine”

Sub-category “Quality of Palliative Care”

Introduction: PALCARE is a home-based palliative care service in the city of Mumbai. Over the past 7 years, from December 2015 to November 2022, 84% of all deaths have been in the comfort of patients’ homes. We look at the reasons for the high success rate; and propose how to continue to have a large percentage of patients die at home.

Aim: The aim of the study is to identify and focus on factors that facilitate a high home-death rate in the Indian palliative home care setting, particularly in the city of Mumbai.

Method: The team analysed data on deceased patients by way of those who died at home, hospice, hospital. An analysis by gender, age and income groups was also carried out.

Results: Of the 2194 PALCARE patient deaths in the period surveyed, 84% died at home; 5% in a hospice, and 11% in a hospital. This breakup remained uniform across different zones. Deeper analysis showed that while 32 % of the age group 40-60 accounted for all deaths, their share of hospice deaths was 40%. Only 2% of all hospice and 17% of all hospital deaths were from the upper income group while their share of all demised patients was 13%. Women accounted for 57% of total deaths, but 61% of all hospice deaths.

Conclusions: We suggest providing a high-quality home-based palliative care service is a significant factor (educating and empowering the family, providing intense caregiver support to the very end etc.).

Dr. Amanjeet Kaur and Psychologist Jarvis Varghese

The Jimmy S Bilimoria Foundation, Mumbai/ India, + 91 -022- 24700484/ 485, contact.palcareindia.com, 7C, Trust House, Next to Global Hospital,

Dr. E Borges Road, 35 Hospital Avenue, Parel, Mumbai 400012, India.

Category, Track 3 - “Oncology Palliative Medicine”

Sub-category “Psychosocial issues”

Introduction: PALCARE is a home-based palliative care service in the city of Mumbai caring primarily for people with advance stage cancer. Since inception in December 2015, it has cared for 2500 patients; and each year, the number of patients has grown exponentially. Many patients are weighed down by psychosocial and spiritual pain, the management of which is often crucial to the patient’s overall wellbeing.

Aim: The aim of the presentation is to identify and focus on approaches that can help manage psychosocial pain in advance stage cancer patients in the Indian palliative home care setting.

Method: An example was taken of a patient with PALCARE, with signs of severe spiritual pain, aggravated by collusion of husband and son, who would not disclose to her the seriousness of her condition. The team sought the guidance of PALCARE’s Quality and Clinical Advisory Board (Q&CAB). PALCARE’s Head Psychologist kept a close watch on the way the team addressed the patient’s distress caused by her psychosocial and spiritual pain.

Results: PALCARE developed a significant rapport with the patient and her family, which, along with eclectic therapy techniques and the involvement of an external spiritual healer, brought the patient’s emotional and spiritual distress essentially under control. However, breaking collusion failed as the patient passed away before it could be resolved.

Conclusions: Successful management of distress caused by psychosocial and spiritual pain in patients with serious, life limiting conditions, becomes vital to provide them a peaceful death; they must be addressed at the earliest.

Dr. Santona Pal and Dr. Sandeeta Shetty

PALCARE -The Jimmy S Bilimoria Foundation, Mumbai/ India,

+ 91 -022- 24700484/ 485, contact.palcareindia.com, 7C, Trust House, Next to Global Hospital, Dr. E Borges Road, 35 Hospital Avenue, Parel, Mumbai 400012, India.

Category, Track 4 - “Respiratory Palliative Medicine”

Sub-category “Symptom Management other than Pain”

Introduction: PALCARE is a home-based palliative care service in the city of Mumbai primarily for advance stage cancer patients. Since inception in December 2015, it has cared for over 2500 patients; each year, the number of patients has grown exponentially. Breathlessness, or dyspnoea, is a distressing symptom in cancer patients and can have a devastating effect on patient, family, and caregiver. This symptom, along with other symptoms and issues, 36 in total, were thoroughly researched by PALCARE’s Quality and Clinical Advisory Board (Q&CAB). Guidelines for the management of breathlessness, along with the others, were published and are available on the PALCARE website.

Aim: The aim is to promote the PALCARE guideline on the treatment of breathlessness, in cancer patients, in the Indian palliative home care setting, for the benefit of many.

Method: Between December 2016 and August 2019, the Q&CAB along with PALCARE’s former CMO, researched treatment options for Breathlessness, and once satisfied with the research, published the Guideline, details of which can be availed of by interested healthcare medical professionals. The guideline describes common causes of dyspnoea, assessment of the condition, and management of the symptom, including non- pharmacological and pharmacological options.

Results: PALCARE applies this guideline to all its patients who show signs of dyspnoea and consequentially has been able to greatly reduce the destress caused by this symptom.

Conclusions: Managing dyspnoea is a significant factor in providing patients a dignified and peaceful death. It also helps reduce the trauma that families witness when their loved one is faced with this condition.

Suryakanta Acharya

Assam Cancer Care Foundation, Lakhimpur Cancer Center, Lakhimpur, Assam suryaoncology@gmail.com

Introduction: Early phase clinical trials for children with incurable cancers can benefit from early pediatric palliative approach. The investigation center not only handles the trial but also takes care of all the symptomatic treatments. In this context, it seems difficult for the investigator to address issues around failing health and death, making the use of a palliative care team pivotal to discuss these questions.

Aim: The purpose of this study is to evaluate relevance of a pediatric palliative approach for these patients.

Methods: We have analyzed the resorting to palliative care teams for 13 children included in a phase II clinical trial as pilot project before going for a full-fledged study. Pediatric palliative care team had visited individual patients to evaluate their needs.

Results: It was found that 7 patients need additional support from the pediatric palliative care team and would benefit from a long-term care. This had reduced the workload of the trial investigator.

Conclusion: It is feasible and crucial to include a pediatric palliative approach in early phase clinical trials as the end results are largely uncertain and most patients would benefit from this approach. This also enabled clinical trial investigator to focus on trial without being entangled and overwhelmed with symptom management.

Ms Rita Moras¹, Ms Vijaya Kadam²,

Dr Pradnya Talawadekar³, Dr M.A. Muckaden⁴,

Dr Vandana Kumavat⁵, Dr Shailaja Potdar⁶,

Dr Jayita Deodhar⁷

¹Social worker, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai,

India. Email: ritamarymoras@gmail.com, M- 9819132876

²Nurse, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India.

Email:vijayakadam84@yahoo.com, M-8655509993

³Project Coordinator, Dept of Palliative Medicine, Tata Memorial Centre,

Mumbai, India. Email:prad_mac@yahoo.com, M- 9833879446

⁴Consultant, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai,

India. Email: muckadenma@tmc.gov.in

⁵Prof & Head, Dept of Pediatrics, Chhatrapati Shivaji Maharaj

Hospital,Kalwa,Thane,India.Email: vandanakumavat09@gmail.com

⁶Professor, Dept of Pediatrics, Chhatrapati Shivaji Maharaj Hospital, Kalwa,

Thane, India.

⁷Professor, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email:jukd2000@yahoo.co.uk

Background: Children with life limiting conditions and their families have varied needs from symptom management and rehabilitation to social and financial issues. A service delivery project was started for non-oncological conditions at a public hospital since 3 years where a multidisciplinary team is providing holistic care.

Aim: To evaluate the effects of social intervention to improve quality of life of children and their caregivers.

Methods: Total 890 children with various life limiting conditions have been enrolled. Their social status score was evaluated by Kuppuswamy scale and their needs have been documented in the case record forms. The team has developed a network with allied services and Government facilities. Depending on the needs the parents are navigated to various services. Focus group discussions are conducted to find out the issues faced by the beneficiaries. PedsQOL and Family satisfaction scale is administered after every 3 months.

Results: •62% children have shown improvement in social and psychological domains of PedsQOL questionnaire. • Caregivers have expressed satisfaction in Focus group discussions and Support group meetings. • Income generation activities, referrals to special schools, government schemes and rehabilitation centres have shown improvement in quality of life of children and caregivers.

Conclusion: These families have psychosocial and spiritual needs. Recognition of the individual needs of children and caregivers forms the basis of individualised care. The navigation and intervention for social and financial needs significantly improves children’s overall health status as reported by caregivers. It also decreases families’ hardships significantly.

P S Vijendra, Srikant Atreya

Tata Memorial Centre, India

Introduction: In India, gynaecological malignancies comprise 10%-15% of all forms of cancers. It is associated with poor 5 year survival. Approximately 60% ovarian cancers patients present in advanced stages that endangers survival with high symptom burden threatening quality of life of patients.

Aim: The study aimed at understanding the symptom prevalence in patients with ovarian cancers and factors influencing the symptoms.

Methodology: This was an observational study. QOL was assessed using EORTC QLQ C 30 and HADS scale. All patients presenting to the department of Gynecological Oncology were screened for eligibility. The participants were recruited from June 2016 to October 2017.

Results: The mean age of study population was 50.26 years. Almost 40% of the patients presented in Stage III/IV cancer with 64.4% patients having ECOG PS2. Among symptoms, appetite loss was the most common symptom(75.55%) followed by fatigue(70%). There was a statistically significant association between anxiety and global health status, fatigue, pain, insomnia and financial difficulties. There was a statistically significant association between depression and global health status, physical functioning, role functioning and fatigue.The role functioning scale scores had a negative correlation with symptom scores of nausea and vomiting (p:-0.602), pain(p:-0.540), appetite loss(p:-0.556).The emotional and cognitive functioning scale scores had moderately negative correlation with symptom scores with pain(p:-0.580).

Conclusion: Patients had a high symptom burden. Therefore initiating early palliative care will lead to symptom improvement and enhancement of quality of life.

Dr Aswathi Praveen¹, Dr Anuja Damani², Dr Gayatri S³,

Dr Krithika S Rao⁴, Dr Naveen Salins⁵

¹Junior resident, Department of palliative medicine and supportive care, KMC Manipal,

²Associate Professor, Department of palliative medicine and supportive care, KMC Manipal,

³Junior resident, Department of palliative medicine and supportive care, KMC Manipal,

⁴Assistant Professor, Department of palliative medicine and supportive care, KMC Manipal,

⁵HOD and Professor, Department of palliative medicine and supportive care, KMC Manipal

Introduction: Oral methadone is a synthetic opioid in neuropathic and nociceptive pain conditions, however, there is no clear evidence on its use as primary opioid analgesic, opioid rotation to methadone and co-analgesic in cancer pain patients.

Aim: Review the cancer pain patients on oral methadone to assess its use as primary opioid analgesic and co-analgesic.

Methods: The study was a retrospective chart review conducted in the inpatient and outpatient units of department of palliative medicine. Charts of 10 cancer pain patients on methadone were reviewed. A detailed pain assessment including site, intensity and type of pain, reason, and method of starting, baseline assessment before starting, follow up duration and assessments for change in pain intensity, adverse effects, and potential drug interactions were done.

Result: Out of 10 patients, 6 were outpatient and 4 were inpatient. Methadone was commonly used for nociceptive pain conditions which was uncontrolled with the ongoing analgesics. In 100% patients’ methadone was started as opioid rotation from other analgesics and all reported optimum pain relief. In 20% patients’ methadone was co-analgesic along with morphine which improved the symptoms better. One of the patients had increased sedation which led to reduction of oral methadone dose. There were no drug interactions or QT prolongation noted.

Conclusion: Methadone is an excellent choice for opioid rotation in patients with cancer pain. However, there is high variability in its use and opioid conversion methods. Although effective, it requires individualized titration and careful monitoring.

Gupta K, Ravindra P, Meenakshi, Anoop, Hussain M, Dhankhar R

Pt. B.D. Sharma, PGIMS, Rohtak

Introduction: Metastasis to vulva from head and neck cancer is a rare event. It is usually a late manifestation of the primary tumour and may be the first evidence of widespread dissemination of the disease. The diagnosis is difficult and is usually done by histopathological examination. In most cases, the treatment is palliative and the prognosis is poor with a survival of few months. Here we report a case of vulvar metastasis from oropharyngeal squamous cell carcinoma.

Aim: To achieve adequate palliation in vulvar metastasis with Radiotherapy

Case Summary: A 75-year-old female, known case of oropharyngeal cancer for which she was given definitive Radiotherapy, now presented with intractable pain in groin and swelling in perineal region for 3-months duration. On further evaluation, histopathology report revealed poorly differentiated malignant tumour. Patient was oral opioids which yielded no response. Then patient was given palliative EBRT single session to local site. The patient showed good response to local irradiation.

Conclusion: The case report showed that Radiotherapy can achieve adequate palliation in terminally ill cancer patient suffering with unbearable pain resistant to opioid. Further studies are required to standardize an approach to manage such patients

Dr. Rabiya Abdu Razak Malayil , Dr. Anuja Pandit

Department of Onco-Anaesthesia and Palliative Medicine, Dr.B.R. Ambedkar Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India and National Cancer Institute (NCI), Jhajjar, Haryana- 110029, Contact : 8750916227, Email: rabiyamalayil92@ gmail.com

Introduction: India accounts for 10% of the global burden of gallbladder cancer (GBC) and has a high incidence of the disease. The prognosis is very poor as it frequently presents as an advanced disease at the time of diagnosis. Symptom burden is usually high at presentation.

Aim: This inpatient audit was performed to assess the symptom burden, the average length of stay in palliative care ward, symptomatic management and condition at discharge of patients with Gallbladder cancer admitted to the palliative care ward.

Methods: After obtaining permission from the Institute’s ethical committee, data were retrospectively collected from the medical records of patients admitted to the palliative care ward between December 2021- November 2022. A structured proforma for obtaining data from the medical records were used.

Results:Inclusion criteria were fulfilled in 163 patients, consisting of 97 females and 66 male respectively. Mean age of 43.9 years(31-52 years). Majority of the patient’s(n=105) length of stay in palliative care ward was less than 5 days, while 58 patients required admission for 10-15 days. The most frequent symptom was abdominal pain (88% patients). Other symptoms at presentation were abdominal distention (42%), jaundice (32%), pruritis(26%), vomiting(20%) fever (25%), shortness of breath (4%) and altered mental status (4%).Patients were admitted for opioid analgesic titration (58%), neurolytic interventional pain management-Celiac plexus and Splanchnic nerve block(14%), ascitic tapping(33%), antibiotic administration for cholangitis(25%), percutaneous transhepatic biliary stenting(20%) and end-of-life care(7%).Twelve patients expired in the ward and others were discharged in stable condition with mean NRS 2/10.

Conclusions: Gall bladder cancer patients have a high symptom burden necessitating inpatient palliative care admission.The predominant symptom is pain, requiring neurolytic analgesic interventions or opioids. Other symptoms may also be severe and need intensive inpatient palliative management.

Dr. Yamini M¹, Dr. Sathiyanarayanan. S¹,

Dr. Rajeev Aravindakshan²

Assistant Professor, Dept. of Community and Family Medicine, AIIMS, Mangalagiri, Guntur-522503, Andhra Pradesh, India.

Email: yaminivaishnavidevi@gmail.com Phone : 8973549194, 8778582254, Email: sathiya@aiimsmangalagiri.edu.in, Phone: 9597339969 Additional Professor & Head, Dept. of Community and Family Medicine, AIIMS, Mangalagiri, Guntur-522503, Andhra Pradesh, India.

Email: rajeev.a@aiimsmangalagiri.edu.in, Phone: 9961275969

Introduction: While planning for provision of palliative care services in the community, assessment of palliative care need is very crucial. With India undergoing epidemiological transition, and increase in chronic non- communicable disease burden, the need for palliative care services is also on the raise.

Aim: To determine the proportion of people requiring palliative care and their clinical profile among the residents of urban community of Andhra Pradesh

Methods: A community-based cross-sectional study was conducted as part of enumeration among the residents of three areas of Mangalagiri. A structured questionnaire was used to collect the details about morbidities, functional status and health-related suffering, need for palliative care. Data were collected using Epicollect5 software and analysed using STATA software. Categorical variables were summarized as proportions and continuous variables were summarized as mean(SD) or median(IQR) based on the distribution of data.

Results: Out of 1719 households surveyed with 5487 population, 43 (2.4%;95% CI:1.7-3.3) households required palliative care. Among patients requiring palliative care, mean(SD) age was 63.3(10.3), 88.4% belonged to geriatric age group, 55.8% were women, functional was totally dependent for 34.8%, 16.3% needed assistance with activities of daily living and health-related suffering was present in 44.2%. Among them, 15(34.8%) were bedridden, 10(23%) had cancer, 7(16%) had stroke, 5(11.6%) had spinal cord injury and neurological damage, 3(6.9%) had HIV/AIDS, 2(4.6%) had old age frailty.

Conclusions: Palliative care need was present in 8 per 1000 population in the study area. Based on the type of morbidities they are suffering, appropriate customized palliative care services need to be provided these families.

Dr. Praveena Raman

MDS from SRM Dental College and Hospital, Chennai National Fellowship in Palliative Medicine from IPM, Calicut Post graduate Diploma in Clinical Research from Symbiosis, Pune Post graduate Diploma in Health Communication from Symbiosis, Pune Specialist in Tobacco Cessation, ICanCare, Gujarat University Associate Professor, Department of Oral Medicine and Radiology, Asan Memorial Dental College and Hospital, Chengalpattu, India.

Clinical Head at Lemon Dental, Chennai, Tamil Nadu, India.

Contact: +91 7373 23 0303, E-mail: drpraveena7@gmail.com For further details: https://lemondental.in/

Track 7: Theory of change and development of subspecialist palliative medicine

Sub Category: Education, Training And Supervision

Introduction: Tobacco epidemic is one of the biggest public health threats causing pre mature death. Smoking and Smokeless tobacco are proven carcinogens and are the major risk factor for Oral Cancer. Education/ counselling and motivation by an oral physician can improve patient’s oral health related QOL and prevent oral cancer.

Methods: Audit standard was set at 80%, that the tobacco users should have been counselled during each visit and it should have been documented, based on the criteria from Article 14 of the WHO Framework Convention on Tobacco Control. Initial assessment was done retrospectively from 2019 November - 2020 November. The Unit of measurement was the number of visits. Training on tobacco counselling was undertaken, following which every habit patient was counselled during each dental visit followed by documentation. Reassessment was done from Dec 2020 - July 2021.

Results: Overall male predominance was noted. Initial assessment reported 12 patients with tobacco habits, among them 91.7% were smokers and 8.3% were chewers, with a mean age of 56 years. The initial counselling rate was 25%. Reassessment reported 27 patients with tobacco habits, among them 63% were smokers and 37% were chewers, with a mean age of 40 years. The reassessment counselling prevalence was 67%.

Conclusion: Tobacco cessation activities by professionally trained health care team have been proven effective and the success without a professional support is negligible. Dental clinics can definitely create a personal space to facilitate tailor made sessions, which can improve Oral health related & Overall QOL.

Kindly Note: The above clinical audit does not have an ethical clearance as it is not a journal publication and it was done as part of NFPM requirement at IPM, Calicut. I am submitting the abstract after getting a prior approval from my course coordinator. As ethical clearance is a must for journal publication, it is not applicable for this clinical audit.

Rabia Abdu Razak Malayil, Sushma Bhatnagar

AIIMS Dellhi

Managing Hemophilia patient with End Stage Renal Disease (ESRD) is challenging owing to bleeding risk associated with dialysis and involves multiple clinical, psychosocial issue because of the uncertain trajectory of illness and complexity of clinical condition, caregiver issues and its management. Kidney supportive care is not restricted to withdrawal of dialysis or conservative kidney management. We report our experience of a child with hemophilia and ESRD who was managed together by team of Nephrology, Clinical Hematology and Palliative Medicine. A 9 years old child was diagnosed with hemophilia A at one year of age with 0% Factor VIII activity level. He was diagnosed as ESRD in Feb 2022 and was referred for Renal Replacement therapy (RRT).He presented in volume overload state and developed sudden cardiac arrest. He was revived with cardio pulmonary resuscitation. After his initial medical optimisation he was sought Palliative care opinion owing to his risk of bleeding, uncontrolled pain, complex decision making around dialysis, uncertain prognosis and parental distress. Renal safe opioid infusion with appropriate titration was started, family meeting was conducted to explain nature of disease, intent of treatment and plan of management and to empathise parental distress. An integrated approach was designed for the patient to optimise medical management and to set a support system reduce caregiver burden. Choice of dialytic modality in a hemophiliac is difficult and access for maintenance dialysis is complicated.Presently patient is doing well with a home based Peritoneal Dialysis program with twice weekly factor transfusion and liaison with local health care provider with regular palliative medicine follow-up.

Anurag Sarkar, Sachidanand Jee Bharti, Sushma Bhatnagar, Seema Mishra, Nishkarsh Gupta, Rakesh Garg,

Vinod Kumar, Brajesh Ratre, Mahroof Khan, Tushar Sehgal

AIIMS Delhi

Introduction: Fatigue is considered as one of the habitual features in patients of cancer related anemia.It is estimated that Cancer-related fatigue is experienced by around 50% of early cancer patients and in patients with advanced disease course , it goes up to 75-90 %. In patients with an advanced stage of disease ,there may be association with diminished physical function, fatigue and weakness due to Iron Deficiency even in the absence of anaemia which can be improved by iron therapy. The effect of fatigue covers the Physical , Psychosocial, Occupational aspects in life. In the last two decades there has been a lot of information and research findings on Cancer Related Fatigue(CRF), but CRF is still under-reported, underdiagnosed and undertreated.

Aim: To assess the Role of Iv iron therapy on fatigue and quality of life in patients of palliative care

Method: A prospective interventional study of all cancer patients with fatigue were collected. Hemoglobin, TSAT, serum ferritin, serum iron will be determined. Fatigue and Quality of Life Measured using FACT-And Tool. Intravenous Iron given to the study group and reassessment done on day 7 and day 30.

Result: Data of 63 patients suggested no difference in demography.There was a significant improvement in Haemoglobin after 4 weeks(P=0.021) ,with improvement in fatigue and QOL scores in the intervention group at 1 week.

Conclusion: Cancer patients have a high incidence and symptom burden of fatigue which correlates with reduced quality of Life with significant improvement of Haemoglobin.

Joris Gielen Ph.D.¹, Dr. Anjum S. Khan Joad²,

Dr. Sushma Bhatnagar³, Dr. S.K. Chaturvedi⁴

¹Director and Associate Professor Center for Global Health Ethics Fisher Hall 300, 600 Forbes Avenue, Pittsburgh, PA 15282, USA Tel +1 412.396.2616 gielenj@duq.edu

²Director Anesthesia & HOD Pain & Palliative Care Bhagwan Mahaveer Cancer Hospital and Research Centre (Jaipur) Tel 0141-2700107 anjumjoad@gmail.com

³President IAPC Chief Institute Rotary Cancer Hospital (AIIMS New Delhi) Head National Cancer Institute (NCI Jhajjar) Professor and Head Onco-Anaesthesia and Palliative Medicine, Dr. B.R.A Institute Rotary Cancer Hospital, All India Institute of Medical Sciences Tel 011-26594437 sushmabhatnagar1@gmail.com

⁴Consultant Psychiatrist, Leicestershire Partnership NHS Trust, Leicester, UK Former Dean & Senior Professor of Psychiatry, National Institute of Mental Health & Neurosciences (NIMHANS, Bangalore) Tel 011-47022150 skchatur@gmail.com

Introduction: In palliative care, the confrontation with pain, suffering, and death can lead to ethical issues that are particularly fraught. Therefore, people working in palliative care need ethical sensitivity and ethics competence, which can be acquired through ethics education.

Aim: This survey intended to asses IAPC members’ attitudes to ethics and ethics education and assess what kind of ethics education they have had.

Methods: In November-December 2022, all IAPC members were invited by email to complete an online Qualitrics survey with 16 open-ended and closed-ended questions on ethics and ethics education. Open-ended questions were analyzed using traditional content analysis.

Results: 87 members submitted completed surveys. 99% of participants agreed that ethics education is “important” or “very important” for people working in palliative care and 67% frequently encountered ethical issues in their work in palliative care. Nevertheless, 37% had had no ethics education. Among those who had had ethics education, the median estimated number of hours was 6. 97%wanted palliative care programs and organizations to offer more ethics education and 96% would be interested in enrolling for ethics education if it were offered by the IAPC. Main topics that the participants thought needed to be covered in future training are decisionmaking, forgoing treatment, the four principles and approaches to ethics case analysis.

Conclusions: The results show that IAPC members are sensitive to ethical issues in palliative care. Yet, the results also point to a need for the IAPC to further build its capacity in ethics education.

Dr. N Vyjayanthi Venkataramu¹, Dr. Prabha S Chandra²,

Dr. S K Chaturvedi³, Dr. Poornima Bhola⁴,

Dr. Prabha Seshachar⁵

¹Assistant Professor, Dept of Psychiatry, M S Ramaiah Medical College,

M S Ramaiah Nagar, Mathikere, Bengaluru, Karnataka 560054. Email: vyjayanthi1159@gmail.com,

Contact: 9886902336, ²Senior Professor, Department of Psychiatry, NIMHANS, Bangalore, Karnataka, India, ³Former Senior Professor, Department of psychiatry, NIMHANS, Bangalore, Karnataka, India, ⁴Professor, Department of Clinical Psychology, NIMHANS, Bangalore, Karnataka, India, ⁵Consultant, Dept. of Palliative care and RMO, KMIO, Bangalore, Karnataka, India

Introduction: Adolescents and young adults (AYA) in palliative care are a vulnerable group and terminal illness poses a challenge to their developing physiological and psychological stage. AYA have very specific concerns, and their needs are different from that of children and elderly. In order that palliative care systems to develop specific interventions we must understand what are the unique factors influencing their quality of life (Nass et al., 2015).

Objectives: To understand the lived experience of AYAs with terminal cancer and study psychological and social factors affecting their quality of life.

Methodology: The study used a Qualitative study with a phenomenological approach. Narratives from interviews were used from 10 patients,10 family care givers and 8 health providers. The interviews were audio recorded and translated. Coding was done by 2 independent researchers and themes identified.

Results: The various themes that emerged included some that were similar to that affecting QOL in most other phases of life. However, AYA specific themes that were identified included- Loss of dreams and aspirations, not being able to be part of peer group, body image issues, guilt of not taking up responsibility, being a burden, and existential issues. Many AYAs coped by altruism, stoicism, connecting with others and creativity. There was ambivalence in relation to spirituality and several felt that health care professionals did not meet their expectations.

Conclusion: The concerns of AYA specifically need to be understood, to plan interventions to improve their Quality of life, and sensitize health professionals to handle this group better.

Pratiksha Abhaj Bhaije

Bangalore Hospice Trust- Karunashraya, Old Airport -Varthur Main Road, Kundalahalli Gate, Marathahalli, Bangalore, India 560037 Email: anususanmathew12@gmail.com, Ph: 9845446752

Introduction: The Covid 19 pandemic has spread quickly, harming health systems all over the world. The elderly and people with comorbidities are at serious risk of covid associated mortality. Palliative care facilities had to adopt new practices and place restrictions to overcome the devastating effect of Covid 19 on the patients as well as the staff.

Aim: To study the impact of Covid 19 on palliative care service provision.

Methods: This study was an explorative case study where data is collected qualitatively through semi-structured interviews. Study Site & Participants: The case study was carried out at the Palliative Care Center of the Trivandrum Institute of Palliative Sciences, Trivandrum Kerala. The staff working at the palliative care center for 1 year or more and involved in service provision were considered for the study. Data was collected from 20 respondents selected through purposive sampling.

Results: The experiences of the 20 respondents in providing palliative care were examined along the following axes 1. Changes in palliative care services 2. Challenges in service provision 3. Innovations and practices introduced.

Conclusion: The findings give insight into the experiences of the palliative care center during the pandemic. While it was difficult providing the holistic care that palliative care stands for, new practices like telemedicine ensured that services never stopped. Identifying and addressing the gaps and limitations of care as a result of the pandemic can help optimize the health system in a resource-constrained country like India.

Pratiksha Abhay Bhaije¹, Trupti S Yadav²

¹1^st MPT Student, Department of oncologic Physiotherapy, Krishna College of Physiotherapy, Krishna Vishwa Vidyapeeth (Deemed To Be University) Karad.

Email: pratikshabhaije@gmail.com, Contact: 8355997238,

²Associate Professor, HOD, Department of oncologic Physiotherapy,

Krishna College of Physiotherapy, Krishna Vishwa Vidyapeeth (Deemed To Be University) Karad. Email: drtruptiwarude@gmail.com,

Contact: 9028466795

Introduction: Anatomic and functional disorders after surgical resection of various head-and-neck cancers have been well documented. Swallowing disorders are observed to be caused decreased oropharyngeal swallowing efficiency. Dysphagia is seen following surgery for oral tumours, and it leads to malnutrition and reduced quality of life. As per the study, alteration of tongue and swallowing muscle properties are associated with different body position. The effect of body positioning on dysphagia is unclear. The purpose of this study was to examine how posture of body varies the effect of swallowing ability in post operated oral tumour patients.

Aim: To study the effect of body position on dysphagia among post operative oral tumor patients.

Methods: Total of 40 participants were eligible who underwent radical neck dissection with surgical level, II to VII as per inclusion criteria. Participants were randomly assigned into 2 groups. During the study period, Group A, Experimental group (n=20) received swallowing exercises with positioning of upper and lower extremities of body and Group B, Control group (n=20) received swallowing exercises alone after 4 weeks of oral surgery. Pre and post swallowing ability were determined by using M. D. Anderson Dysphagia Inventory and water swallowing test.

Results: All measures significantly improved in the experimental group after 6 weeks of intervention, when the two groups were compared (P<0.05).

Conclusion: The present study concludes that swallowing exercises along with reclining body positioning is beneficial for improving swallowing ability in post-operated oral tumor patients.

Dr. Samujjhal Bharadwaj, Dr. Kabindra Bhagabati,

Uttam Changmai, Dr. Abhigyan Sarma, Dr. Jutika Kalita, Indrajit Baruah, Dipankar Das, Ashtha Baruah,

Bhaskar Jyoti Pathak, Pranab Jyoti Roy, Debojit Nayak

Department of Palliative Medicine, Dr Bhubaneswar Borooah Cancer Institute, Gopinath Nagar, Guwahati, Assam- 781016,

Email: bharadwaj93samujjhal@gmail.com, Ph. No: +91 73999 33675

Track 9: Palliative Care Education

Sub Category: Care Delivery / System Development

Introduction: The Palliative care department of Dr Bhubaneswar Borooah Cancer Institute runs a Home care service not only in city, but also in rural areas up to a radius of 70 kilometres from the Institute covering a total of four districts. Many of the villages face the problem of flood every year. We have seen several problems in those villages viz. of hygiene, shelter, edibles etc. during flood.

Aim: The study aims to find out the hygienic problems faced by patients during flood and tries to find out the ways to mitigate them.

Methods: During the Home care service, we found many villages facing the problem of flood even twice in a year. Flood disrupts the provision of basic human supplies. To understand and lessen the worry regarding hygiene of the affected people, we formed a team of doctor, nurse, social workers, counsellors and volunteers. We followed a prospective cohort method to find the impact of floods on hygiene, with an eye on mental and physical health of the affected people.

Result: We found that various health issues like dermatitis, vomiting, food poisoning, fever, cold etc. occur during and after flood which may be due to lack of awareness, ignorance, unhygienic environment etc. The other problems found were disruption of travelling for better treatment, structural damage to home, loss of pet and livestock, slump economy, psychological distress etc.

Conclusions: The findings have helped to understand the hygienic problems of flood affected people and to have practical implications for service planning and delivery for next disaster.

J Mounika, T Nandini, S Anuradha, Dr Gayatri Palat,

Dr A Jagadeshwar, Dr Mohammad Ishak,

Dr Archana Iyengar

Pain Relief and Palliative Care Society Mandira Children Hospital, Hyderabad

Introduction: The Paediatric hospice in Hyderabad is first of its kind facility in India catering for children with life-limiting conditions. It was started in May 2021. The facility provides symptom control, respite care and end of life care with help of a trained Paediatric multidisciplinary team.

Aim: To explore the profile of children admitted in children’s hospice.

Methods: A retrospective review of case files of children admitted in the hospice during the study period May 2021 to December 2022.

Result: 232 children were admitted since inception, of which 92 were suffering from cancer while 140 with non-Oncological conditions. The source of referrals was from tertiary cancer hospital, Children’s hospital, home care and from district palliative care centre. 159 children received opioids for various indications such as palliative sedation, pain, dyspnoea. 182 children got discharged and were followed up by home care team or by district health centres. 50 children received end of life care. The common disease conditions were CNS disorders like cerebral palsy, neurodegenerative conditions, acute leukaemia and solid tumours.

Conclusion: An exclusive paediatric hospice facility will result in more number of referrals from hospitals and community for palliative care service. These children received good symptom control and quality end of life care in a safe and nurturing environment of hospice with help of multidisciplinary team.

Dr. Abhigyan Sarma, Dr. Kabindra Bhagabati,

Dr. Jutika Kalita, Dr. Samujjhal Bharadwaj,

Uttam Changmai, Sudip Rudra Paul, Dipankar Das,

Ashtha Baruah, Bhaskar Jyoti Pathak, Indrajit Baruah

Department of Palliative Medicine, Dr Bhubaneswar Borooah Cancer Institute, Gopinath Nagar, Guwahati, Assam- 781016,

Email: drabhigyangsarma@gmail.com, Ph. No: +91 80117 88817

Track 9: Palliative Care Education Sub Category: Selfcare and Wellness

Introduction: Palliative Care team members are vulnerable to burnout working in a Palliative care unit. Burnout within the Palliative care workforce is often discussed, yet seemingly under researched. Moreover, there is an apparent need for self-care in this practice to avoid burnout syndrome. Factors for burnout includes working with inadequate workforce, massive patient load, working for long hours and on weekends, dealing with difficult psychosocial issues etc., leading to suboptimal professionalism and grave personal outcomes.

Aim: The aim of the study is to explore the prevalence of burnout syndrome in Palliative care professionals in a tertiary cancer center of India.

Methods: It is a prospective cohort study with the help of Maslach Burnout Inventory for Medical Professionals (MBI-HSS(MP)). All scores were marked by participants and examined and analysis was done.

Result: The study was conducted on 17 participants. It included 4 physicians, 4 nurses, 3 social workers, 2 psychologists, 2 volunteers and 2 drivers. Out of 17 participants, all, except 2, had burnout (88%). It has come to light that majority of team members are suffering from various levels of burnout syndrome which leads to health issues, suboptimal patient care which gets reflected on poor symptom relief of the patients.

Conclusion: It has been seen that burnout is the most common problem in Palliative care professionals. Solving this problem requires approaches aimed at individual, team and institutional level. Professionals need to find meaning in their work and practice self-care if they are to remain vibrant, present and resilient throughout the career. Several leisurely activities have been taken up by the department to decrease burnout.

Prathvi Naik¹, Anuja Damani², Shankar Prasad Nagaraju³, Pankaj Singhai³, Naveen Salins², Ravindra Prabbhu³, Bharathi³

¹Kasturba Medical College, Manipal Academy of Higher Education,

Manipal,

²Department of Palliative Medicine and Supportive Care, Kasturba Medical College, Manipal Academy of Higher Education, Manipal,

³Department of Nephrology, Kasturba Medical College, Manipal Academy of Higher Education, Manipal

Introduction: Patient undergoing maintenance dialysis therapy may experience a high symptom burden, which has negative impact the quality of life of patients, caregivers and is associated with an increased risk of hospitalisation and mortality.

Objectives: The objective of this study was to assess the symptom burden among end stage kidney disease patients on regular hemodialysis.

Methodology: This was a cross-sectional study and follows purposive sampling method. A total of 118 ESRD patients 92 males and 26 females were enrolled. The Edmonton Symptom Assessment System Revised: Renal english version scale was used to assess symptom burden among patients undergoing hemodialysis. The data collected included demographic details, dialysis vintage, no. of hemodialysis per week, symptom burden score. The obtained scores were analysed using SPSS version 20.

Results: The total distress score was 26.07+ 17.49 and some of the common distressing symptoms undergoing hemodialysis were wellbeing, fatigue, sleeping difficulty and pain.

Conclusion: This high symptom burden suggests the need of periodic evaluation of symptom burden and patient centered care by Kidney supportive clinicians.

Dr. Himanshu Prince¹, Dr. Sachidanand Jee Bharti²,

Dr. Sarita Singh³, Dr. Radha Kishan Dhiman⁴

¹Assistant Professor, Anesthesiology, In charge Dept. of Palliative Care, Kalyan Singh Super Specialty Cancer Institute, Lucknow, India.

E-mail: drhimanshuprince@gmail.com, Phone: 9452241818,

²Professor, Dept. of Oncoanesthesia & Palliative Medicine, Dr. BRAIRCH All India Institute of Medical Sciences, New Delhi, India, E-mail: sachidadr@yahoo.co.in,

³Professor & In charge Pain Unit, Dept. of Anesthesiology, King George Medical University, Lucknow, India, E-mail: saritacsmmu@rediffmail.com, ⁴Professor Departement of Hepato-gastroenterology (SGPGIMS) &

Director, Kalyan Singh Super Specialty Cancer Institute, Lucknow, India, E-mail: director@sgpgi.ac.in director.sscih@gmail.com

Introduction: Kalyan Singh Super Specialty Cancer Institute situated at Lucknow, Uttar Pradesh, is an upcoming state of the art dedicated cancer center that was envisaged by government of Uttar Pradesh. OPD & IPD

Services are being provided since 2020. According to the data from Medical Record Section of the Institute, majority (55%) of newly registered patients fall in the advance stage/ terminal / metastatic category. In view of the above facts, incorporating palliative care in routine practice is need of the hour, which can only be ensured by training the Health Care Workers in the specialty of Palliative Care.

Aim: To sensitize, educate & train the Health Care Workers (Nurses and other paramedical staff.) in the field of Palliative Care.

Methods: On consecutive 4 Saturdays starting from 23^rd july 2022, A Training Program in Cancer Pain and Palliative Care for nurses 2022, under the aegis of IAPC was conducted at the Institute. Program module covered introduction of Palliative Care and role of nurses in Palliative Care, management of cancer pain & other symptoms (malignant wound, stoma care, lymphedema, oral care and End of life care).

Results: Total 50 Health care workers trained under this program. Significant change in understanding of specialty of Palliative Care was reflected in the assessment of Pre-test and post-test.

Conclusion: Education and sensitization of Health Care Workers in the specialty of Palliative Care is a necessity to provide comprehensive & holistic care to the patients suffering from of Cancer diseases and advance Non- communicable diseases.

Aniket G. Jadhav¹, Pavan Kumar², Piyush Kumar³

¹Junior Resident, Department of Radiation Oncology, SRMS-IMS, Bareilly, Phone: 9958290297, E-mail: aniket.dipsite@gmail.com,

²Associate Professor, Department of Radiation Oncology SRMS-IMS, Bareilly,

³Professor, Department of Radiation Oncology SRMS-IMS, Bareilly

Introduction: Lung cancer remains the second most common cancer in terms of incidence, and the most common cause of cancer-related morbidity and mortality worldwide. About 20% patients present with metastasis at the time of diagnosis. Radiation therapy plays a major role in palliation to brain metastasis and painful bony metastasis. Palliative care is an important aspect for treatment of palliative cases and application of these principles should be incorporated into the management.

Case Summary: A 65 year old man post-operatively diagnosed as metastatic adenocarcinoma of the brain presented to the Oncology OPD in March 2022. Metastatic workup revealed a primary lesion in the left lung. Further investigations revealed extensive metastases throughout the body. He was treated with palliative radiotherapy to brain and bone and subsequently administered 4 cycles of palliative chemotherapy with Paclitaxel and Carboplatin. Opioid analgesics- oral Morphine, IV Fentanyl- were incorporated into line of management for symptomatic relief from bone pain. Gradual disease progression led to neurocognitive dysfunction, and deterioration of vitals and general condition. The patient’s family was counselled for best supportive care at home which they reluctantly agreed to. He passed away peacefully in the presence of his family members at home.

Conclusion: Oncology management in terms of radiotherapy, chemotherapy is crucial in the management of metastatic disease, but various principles of palliative care; physical, spiritual, psychosocial, emotional; are necessary to be incorporated into the line of management.

Uttam Changmai, Dr. Kabindra Bhagabati,

Dr. Abhigyan Sarma, Dr. Samujjhal Bharadwaj,

Dr. Jutika Kalita, Dipankar Das, Ashtha Baruah,

Bhaskar Jyoti Pathak, Indrajit Baruah

Department of Palliative Medicine, Dr B Borooah Cancer Institute,

Gopinath Nagar, Guwahati, Assam - 781016, Email: uttamchangmai96@ gmail.com, Ph. No: +91 86381 34645

Abstract Category: Palliative Care Education Sub Category: Care Delivery / System Development

Introduction: The Home Care Patient Support Programme (HCPSP) - a financial grant for the patients who are registered under Home Care Service of a tertiary cancer centre, Guwahati.

Aim: The aim of the study is to find the impact of HCPSP in relation to financial burden for upper lower, lower middle & lower class families of patients getting treatment in a tertiary cancer centre.

Methods: This is a retrospective study with chart review technique. The socio-economic status of home care patients were evaluated with the help of Kuppuswami Socio-economic Scale (SES). Various patients got help for treatment & medications based on the socio-economic categories.

Result: A total of 679 patients received home care service in 2539 number of home visits till 31^st Dec, 2022. A total of 77 patients were benefited with an amount of Rs.3,94,429/- to procure medicines for chemotherapy & supportive treatment along with treatment of radiotherapy and surgery. Patients also got all pathological and radiological investigations free of cost. It was found that a total of 411 patients were evaluated by SES of which 245 were found to be in need of financial help. But, a total of 77 patients only benefited by the scheme.

Conclusions: Being a developing country, there is need for new schemes to enhance healthcare expenditures so that patients get the proper treatment.

Dr Sanyamita Jain (JRI), Dr Ayush Garg¹, Dr Piyush Kumar²

¹Assistant Professor,

²Professor and Head, Department of Radiation Oncology SRMS IMS, Bareilly

Introduction: Malignant metastatic mesothelioma is a rare and fatal disease with a median survival of 6 months. Though chemotherapy can be given in a metastatic setting to prolong life, in a end of life care setting, palliative care is an integral part of the management

Case summary: A 47 years old presented to our OPD, with complaints of pain and distension of abdomen since 24 months, following which Biopsy from omentum was done May 19 suggestive of mesothelioma. Patient then received 7 cycles of chemotherapy last in December 2019. Patient thereafter defaulted treatment due to the COVID-19 pandemic for one year. He then presented after 1 year, CECT Thorax was done suggestive of multiple mediastinal lymph nodes followed by ATT intake for 6 months. CECT ABDOMEN was suggestive of residual disease. He then received 8 cycles of Chemotherapy last in May 2022. During chemotherapy he was given pain management and supportive care. He then presented after two months with breathlessness and generalized weakness. CECT Thorax suggestive of gross pleural effusion. He was shifted to the medical ICU and underwent ICD inserted, vasopressor support was added due to septic shock. Patient expired after 2 days in ICU.

Conclusion: Continuous management in the form of chemotherapy may lead to increase in survival in the end of life care setting. Patient should be counseled for not opting for an ICU death which is against the principals of palliative care.

Vidya Viswanath¹, Alisha Karim¹, Pratika Petare²,

Dolorosa Fernandes³, Priyanshu¹, Dharun Prasad²,

Ventrapati Pradeep⁴, Rohit Vadgaonkar⁵, Raviteja Miriyala⁵

¹Palliative Medicine,

²Psycho-oncology,

³Preventive Oncology,

⁴Medical Oncology,

⁵Radiation Oncology, Homi Bhabha Cancer Hospital & Research Centre, Visakhapatnam

Introduction: Breathlessness is a distressing symptom in patients with cancer. Management principles are based on the empirical BreathingThinking-Functioning model. A multidisciplinary team (MDT) approach is recommended for management, especially for non-pharmacological interventions (NPIs)^1,2,3.

Aim: The purpose of this audit was to study the documentation of breathlessness and the NPIs planned. The set standard was 100% for both. The secondary objective was to analyse symptom clusters associated with breathlessness.

Methods: MDT was inducted in the department of Palliative Medicine in 2022. To assess the impact of MDT on documentation of breathlessness and NPIs, case records of adult patients with cancer, in March 2021 and March 2022 were retrospectively audited. Statistical analysis was done using Epi Info.

Results: In 2021 (n=391), 68% had documentation of breathlessness with 0% documentation of NPIs. In 2022 (n=433), there was a substantial improvement in the documentation of breathlessness (80%) and NPI (16%). Symptom clusters associated with breathlessness varied between 2021 (anxiety, fatigue and loss of wellbeing) and 2022 (drowsiness, fatigue, loss of appetite and pain), likely due to improved documentation.

Conclusion: Induction of MDT resulted in improved documentation of breathlessness and NPIs; however, the set standard of 100% could not be achieved. Additional interventions to further improve documentation (run chart and codes to document NPIs) have been introduced based on this audit.

References

1. Henson LA, et al., Palliative care and the management of common distressing symptoms in advanced cancer: pain, breathlessness, nausea and vomiting, and fatigue. Journal of clinical oncology. 2020 Mar 20;38(9):905.

2. Spathis A, et al., The Breathing, Thinking, Functioning clinical model: a proposal to facilitate evidence-based breathlessness management in chronic respiratory disease. 2017 Apr 21;27(1):1-6.

3. EBM Guidelines; Current Concepts and Controversies in Palliative Medicine, (Vol. XVII); (Part C)

Reena Joy, Udita Joshi, Mithili Sherigar, Babita Varkey

Bangalore Hospice Trust - Karunashraya Institute for Palliative Care Education and Research (KIPCER), Bangalore, India, Email: udita.joshi@ karunashraya.org, Phone no: +91 7895475051

Introduction: Prognostic prediction is an important aspect of palliative and end-of-life care for patients with advanced cancer. It helps determine the life expectancy of patients and helps identify their treatment goals. This study aimed to evaluate the accuracy of the Palliative Prognostic Index (PPI) in predicting the life expectancy of advanced cancer patients in a hospice setting.

Methods: Medical records of 115 patients admitted to hospice between April and May 2022 were analyzed retrospectively. PPI was scored within 48 hours of admission (>3 weeks; < 6 weeks; >6 weeks) for all patients admitted in two wards of the hospice. All patients were followed up until death. Discharged patients were followed up either telephonically or through homecare until death. Concordance between estimated and actual survival was analyzed, and its significance was studied using the chi-square test.

Results: The median survival time between admission and death was 15 days (95% CI: 18.3-24.8). The concordance between the estimated survival using PPI and the actual survival was 90.5% for <3 weeks, 35.7% for <6 weeks, and 47.1% for >6 weeks. The sensitivity of PPI for <3, <6, >6 weeks was 90.6%, 42.9% and 47.1% whereas the specificity was 62.9%, 32.2% and 92.6% respectively. The results were statistically significant (p-value <.001).

Conclusion: The study showed improved discriminatory ability using the PPI score <3 weeks in predicting survival advanced cancer patients. However, the sensitivity of the index for predicting survival of <6, >6 weeks was relatively low. This suggests PPI is useful in hospice setting and can be incorporated as part of a regular assessment.

Rupali Uttam Malwadkar, Mudita Yadav, Adnan Khan

Sukoon Nilaya Palliative Care Centre

Background: Culture impacts all aspects of palliative care. The palliative care issues and concepts are heavily influenced by the family values, practices and beliefs. The communication, medical decision, making pain and symptom assessment and management, nutrition and even the end of life rituals are affected due to culture. India being such a diverse country poses lots of challenges for both caregiver as well as the health care team. In palliative care the primary informal caregiver has a vital role hence the cultural impact on that person defines the care and dealing with the health professionals quite a lot. The primary caregiver may not be the person who takes decision it is different in all cultures. The factors including are age, sex, education, knowledge of disease, emotional trauma, availability and accessibility of the support, religious and ethical values.

Aim: 1. To understand the cultural backgrounds of primary family caregivers of patients registered with our palliative care Centre. 2. To identify the challenges faced by those caregivers while caring for their patients based on their cultural backgrounds.

Methodology: Family caregivers of patients registered at a palliative care Centre in Mumbai offering cancer and non-cancer palliative care were asked close ended questions from a self-administered questionnaire based on cultural aspects like age, gender considerations, language, religion, spirituality, socioeconomic status, health literacy and disability status. The interviews were either conducted in-person or over telephonic conversations with primary family caregivers of patients who had been registered with our Centre from 1st May 2022 to 30 September 2022.

Result: 34 primary caregivers of patients were interviewed, the majority of the caregivers were spouses. The demographics were noted and the responses to the questionnaire were recorded and the results were analyzed.

Conclusion: Both qualitative and quantitative research is needed to address the cultural differences and design interventions to counter them without endangering their cultural sentiments.

Dr. Ujjaval Tripathy, Dr. Lipika Patra, Dr. Satish Sadangi,

Mr. Swaroop Kumar Baral

Bagchi Karunashraya Palliative Care Centre, Bhubaneswar, Odhisa.

Email: ujjaval.r@karunashraya.org, Phone no: 7077100388

Background: Provision of home-based palliative care involves a holistic care by a multidisciplinary team. Despite increasing prevalence of home-based palliative care services in India, most referrals occur exceedingly late in the illness trajectory. Thus, this study investigates patterns of palliative care referral for patients enrolled for home care services.

Methods: A retrospective chart review was conducted in a home-based oncology palliative care service in Odisha. Data between October 2021 to December 2022 were analyzed using descriptive statistics.

Results: Among the 315 cancer patients included in this study, the mean age was 56 ± 14.1 years; 46.6% were males and 53.4% were females. Majority (80.8%) were hospital referrals, with other referral sources being voluntary organizations and past patients. Four of the most prevalent oncologic diagnosis were gynaecological cancers (30%) followed by gastrointestinal cancers (27.3%), head and neck (19.1%), and lung cancer (12%). Around 70% of the referrals were for stage 4 cancer and 26% stage 3. Chemotherapy was ongoing in 45% and chemoradiotherapy in 20%. Around 25% were not on any disease-directed therapy. The primary cause for referral were symptom management, pain and nursing care.

Conclusion: The present study provides brief overview of the referral services in a home-based palliative care setup. This study does not identify the reason of variability of clinical need or other factors. Further investigation is warranted to explore influences on referral decisions made within the community, examine whether such patterns are inequitable and explore the effectiveness and cost effectiveness of the services rendered.

Pratibha Jha, Puneet Rathore, Bimla Sharma

Sir Ganga Ram Hospital New Delhi

Introduction: Patients coming to the end of their lives need high quality care and treatment which is likely to involve making difficult and emotionally challenging decisions. These situations require a good communication and decision making with an integration of relevant conceptual knowledge of ethical implications, legal considerations, principle of shared decision making and communication skills that address the highly charged emotional issues under discussion.

Aim: Implementing DNR/DNI decisions during end of life care.

Methods: A retrospective analysis of 157 patients admitted in a tertiary care hospital for end of life care in North India from 2017 to 2021 was performed. Palliative care referral was sorted to take important decisions like ‘Do not Intubate’ (DNI), ‘Do not Resuscitate’ (DNR).

Results: Out of 157 patients, 91(57.9%) were above 60 years of age. There were 83(52.8%) male patients. Most patients were from oncology unit 82 (52.2%) followed by internal medicine 46 (29.93%) and neurology 11(7%). The average number of visits by Palliative care team was 4.83 days. Number of patients who opted for DNI/DNR was 125 (79.61%), while 30 patients who did not sign DNI/DNR went ahead with intubation. Two patients who signed for DNI were initially proceeded with intubation later on. 55(44%) patients of those who signed for DNI/DNR died at home with a good supportive care.

Conclusion: When properly executed DNR and DNI orders are among the most useful tools which can be offered if treatment remains futile and care is supportive. A larger study is needed to confirm our findings.

Dr. Bharathnag Nagappa¹, Dr.Yamini M²

Assistant Professor, Department of Community Medicine, Sri Siddhartha Medical College and Research Centre, Tumkur, Email: bharathnagn@gmail. com, Phone: 8971252949,

²Assistant Professor, Dept. of Community and Family Medicine, AIIMS, Mangalagiri, Guntur, Email: yaminivaishnavidevi@gmail.com,

Phone: 8973549194, 8778582254

Introduction: While Planning for National Program for Palliative Care, the key activity is to do the situational analysis to estimate the population requiring palliative care services. Increasing trends of ageing population is observed in all states of India. The burden of chronic multi-morbidity is also on the rise among elderly which in turn increases the patients requiring palliative care due to increase in complications associated with non-communicable diseases. Since, most of the palliative care patients are above 45 years age group, we plan to analyse the data from the nationally representative survey, Longitudinal ageing study India (LASI) to determine the demand for palliative care services.

Aim: To determine the proportion of people requiring palliative care among Indian population aged above 45 years using the data from LASI.

Methods: The LASI is a full-scale national survey of scientific investigation of the burden of disease, functional health, healthcare, and the social and economic wellbeing of the population ageing in India. In this nationally representative survey of72,250 older adults age 45 and above across all states and union territories of India were sampled using multistage stratified area probability cluster sampling design. The proportion of population requiring palliative care will be calculated and presented with 95% confidence interval. Analysis will be done using STATA statistical software version 14.

Results and conclusion: The LASI data is received from the IIPS. Analysis will be done and the results along with conclusion will be presented during the conference IAPCON 2023 as oral or poster presentation.

Uma Maheshwari M, Gargi Kumar, Priya Tereesa Thomas

NIMHANS Bangalore, India

Introduction: Palliative care is specialized care for persons with serious, complex and often terminal illnesses, often recommended to begin in the early stages of being diagnosed. Neuro-palliative care is an emerging field that fulfils the needs of the person in all domains of quality of life.

Aim: This review aims to describe current understanding of the psychosocial needs among persons requiring neuro palliative care.

Methods: A scoping review was conducted to explore the psychosocial needs of the person diagnosed with chronic neurological disease and their family members. The inclusion criteria were research studies published in English from 2011 to 2021 and articles focusing on identifying the psychosocial needs specific to neuro-palliative care. Articles that described interventions, case reports and brief communications were excluded. The search was conducted using keywords related to the research question in electronic databases: PubMed and google scholar. Articles were screened using Prisma-ScR guidelines and synthesized thematically using Arksey and O’Malley’s Framework.

Result: A total of 20 articles were included in the review. Most of the articles are from western context. The major themes were structural and process of care; psychosocial and psychiatric aspects; spiritual, religious, cultural and existential care; care of imminently dying patients; legal and ethical aspects. Studies acknowledged that the acute unpredictable trajectories of these diseases highlight the underserved areas in the public health and palliative care realms.

Conclusion: Context-specific studies are needed in this area as it is an emerging field comparing other palliative care services.

Dr. Hashmath Farhaana S.

Pallium India Trust,Trivandrum,Kerala,India, Email: fathrul2205@gmail. com, Contact: +91-9790392182

Aim: To analyze whether the service provided and advice given by our TH team was satisfactory.

Introduction: TH is an emerging mode of health care provision in the field of Palliative care(PC).TH helpline at our organization has effectively helped us in managing patients and their families with SHS especially during the COVID pandemic by means of face to face video consultations, voice consultations , one on one chats and regular follow up’s. TH helpline was set not only for providing tele-consultations but also to support Health care Professionals(HCP) across the country by opening a platform where HCP’s can reach out to us for seeking advice in managing their patients with palliative care needs.

Methods: A feedback questionnaire was prepared and random follow up phone calls were done from our end to 122 beneficiaries who availed our TH service between April 2021 to March 2022. Ten major questions were framed to assess our effectiveness i.e., time spent during the call, explanation given, quality of our assessment, courtesy, respect, privacy, friendliness of the team, instructions given and technical experience. Each question was scored from 0(lowest) to 10(highest) and the total score for each feedback call was calculated out of 100.

Results: A simple statistical analysis was done and the average feedback score out of 122 calls was found to be 91.041%

Conclusion: TH is the future of health-care delivery systems in PC. TH is a good modality for proper assessment of symptoms and can be widely employed for follow up assessments in PC.

Ms Vijaya Kadam¹, Dr Vandana Kumavat²,

Dr Shailaja Potdar³, Ms Rita Moras⁴,

Dr Pradnya Talawadekar⁵, Dr M.A. Muckaden⁶,

Dr Jayita Deodhar⁷

¹Nurse, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email:vijayakadam84@yahoo.com, M-8655509993,

²Prof & Head, Dept of Pediatrics, Chhatrapati Shivaji Maharaj Hospital, Kalwa, Thane, India. Email: vandanakumavat09@gmail.com,

³Professor, Dept of Pediatrics, Chhatrapati Shivaji Maharaj Hospital, Kalwa, Thane, India,

⁴Social worker, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email: ritamarymoras@gmail.com, M- 9819132876,

⁵Project Coordinator, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email: prad_mac@yahoo.com, M- 9833879446,

⁶Consultant, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email: muckadenma@tmc.gov.in,

⁷Professor, Dept of Palliative Medicine, Tata Memorial Centre, Mumbai, India. Email:jukd2000@yahoo.co.uk

Background: In India, provision of Pediatric Palliative Care is totally insufficient. Though there is an enormous need of specialised Pediatric Palliative Care Centres, the existing number is disproportionate to the need. A service delivery project was started for non-oncological conditions at a public hospital.

Aim: To identify the prevalence of the non cancer conditions and provide the need based intervention to improve the quality of life.

Methods: A need assessment indicated that 12.5% of the children visiting Pediatric OPD would need palliative Care.896 children with various life limiting conditions have been provided holistic palliative care by a multidisciplinary team. Based on the disease trajectories, children and caregivers were provided symptom management, counselling, social and financial support for ration, medicines and nutrition and spiritual care. Diversion activities, Focus group discussions and Support group meetings were organised..Income generation activities, rehabilitation and bereavement support was also provided. PedsQOL(4.0)and family satisfaction scale was administered to assess the impact.

Results: 57.1% of the children were male. Majority of the children were below 12 years.The prevalence of disease conditions was: 58.7%- Ne urological conditions, 17.4%- Genetic conditions, 7.6%-Chronic renal conditions, 5.6%- Hematological conditions, 3.3%- Cardiac conditions,0.4%- Respiratory conditions and 6.8%- Other conditions. • There is a significant difference between pre & post intervention in all domains of PEDSQOL questionnaire. • Caregivers expressed that visiting the centre has improved their knowledge about the diagnosis and prognosis.

Conclusion: Children with life limiting conditions have varied needs. Pediatric Palliative Care provision by a multidisciplinary team helps in improving the quality of life of children and their caregivers.

Soja Joseph¹, Dr. Gargi S Kumar², Dr. Priya Treesa Thomas³, Prof. Dr. Nalini A⁴

Junior Social Worker, Neuropalliative care Project, Neurology, NIMHANS, ²Project Coordinator,Neuropalliative care Project,Neurology, NIMHANS, ³Additional Professor, Department of Psychiatric Social Work, NIMHANS, ⁴Professor, Neurology, NIMHANS

Background: People with chronic illness wish to spend their last moments in their own home with loved ones. In the event of a chronic neurological illness, end of life care at home necessitates high support and care. Significant gaps exist in the current understanding about the care support needs of people with neurological disorders who are being cared for at home.

Methods: An interview- based qualitative inquiry was conducted to understand the home care experiences for people with chronic neurological illness. Key informant interviews were conducted with three experts with experience in the field of oncology home care. Simultaneously, palliative home care teams were visited and observation notes made. Home visits were conducted for twenty six patients who consented for visits, and required long term care. The data from the three sources were thematically analysed and triangulated.

Results: Home visits are found to be feasible in reduction of symptom burden and improve quality of life, assist in meeting the goals of care, satisfaction and reduction in care giver stress. Some of the challenges were accessibility issues, identification of the needs of the patient and care giver, psychosocial-spiritual-financial care needs, including nursing care, the safety of the team, transportation, social stigma, less mobile connectivity and limited equipment. The need for multidisciplinary team and the changing needs of the patients as illness progress were highlighted.

Conclusion: Home Based care is an essential part in advance stages of all neurological disorders, and this conversation should begin from the stage of diagnosis.

Megha Reddy, Sangeetha N., and Dr. Seema Rao

Bangalore Hospice Trust - Karunashraya, Old Airport- Varthur Main Road, Kundalahalli Gate, Marathahalli, Bangalore, 560037, India,

080-2847-6133. E-mail: mreddy12@jh.edu, sangeetha.n@karunashraya.org, seema.rao@karunashraya.org

Introduction: Understanding referral patterns to palliative care is critical to ensure that those who are in need are receiving care, understand existing inequities in access, and check for integration of timely referral systems.

Aim: This study investigates how palliative care services are utilized for cancer patients in hospice through referral system and it also examines referrals within 30 days of the admission to the death.

Methods: This retrospective study used admission records data from the second wave, third wave, and intermediate period of the COVID-19 pandemic. Descriptive analysis was used to analyze referral patterns and independent t-test was used to describe differences in referral by age group and socioeconomic status.

Results: Majority of the patients referred were female, >60 years, and from low- and middle-income groups. The study found that palliative care referrals for cancer patients occurred less than 30 days from admission to death across all three periods of the COVID-19 pandemic, independent of age and socioeconomic status. Carcinoma breast was the most commonly reported cancer and doctors were the top referral source across all three periods.

Conclusion: The study shows cancer patients are referred to palliative care less than 30 days from admission to death, which suggests that more timely referral systems are needed along with end-of-life care. Key stakeholder engagement is necessary to ensure early referrals and promote access to care, especially among men and younger age groups.

Keywords: Referral patterns, Palliative care, End-of-life care, COVID-19.

Deepa Muthaiya, K Nambudripad, John Kurien, V. Menaka, Salitha Abraham, Jissy V Poulose, Mallika Devasahayam

Dean Foundation Hospice and Palliative Care Centre, Old No.73, New No.59, 2nd street, Aspiran Garden Colony, Kilpauk Chennai Tamilnadu 600010 email: deanfoundation@gmail.com/ deanmed98@gmail.com

Introduction: A book, an inspiration, the beginning of a journey! After being inspired, the stage was set to analyse the need for Palliative Care services. This revealed a high burden of mortality and disability. Other problems included disparity in service provision, unrelieved pain/suffering especially in underserved populations, lack of trained personnel and resources, difficulty in building and sustaining capacity, lack of essential medicines, strict regulations for opioid access, and exaggerated fears of addiction/dependence.

Aim: To build importance for the speciality, align with the existing healthcare system in place, create leaders and champions at all levels through training/engagement of stakeholders, facilitate access to affordable medicines, create replicable low-cost models of care delivery and to prevent futile medical interventions.

Methods: Focus was on: Addressing the barriers; Integrating Palliative Care into the care continuum; Highlighting the progress through guidelines and networking; Making opioids and palliative care accessible; Creating tools to measure impact of activity and Adopting a simple, easy, low-cost model to implement and cater to large numbers.

Results: We raised awareness of the speciality, Emphasized the human rights angle, Amended the Narcotic Rules of Tamil Nadu in 2000, Created better brand perception, Increased goodwill and public trust, Provided Advocacy -working with the State Government Health Care system and Enhanced pride of association that lead to a greater connect and increased service centres.

Conclusion: Each new challenge is an opportunity for improvement, the search for a solution and the implementation of a superior model of service delivery from registration of a new person and his family, through bereavement.

Radha M G

M S Rammiah Memorial Hospital, Bangalore, India Theme: intensive care palliative care

Subcategory: palliative care in non-cancer diseases view point

Palliative care aims to improve quality of life for patients with life- limiting illnesses. It is understood and practiced better in cancer patients. The symptom burden and care needs for patients with end-stage, non- malignant illnesses are similar to those of patients with advanced cancer. Multidisciplinary approach including clinical care, psychosocial support and family support are required. These are heterogenous and hence the needs vary significantly by the patients and the families. Generalist skills in palliative care are the domain of all medical practitioners. General practitioners are the cornerstone to provide palliative care. Community palliative service provision is vital. However multiple barriers exist for both clinician and patients. There are a number of clinical factors and specific tools available to help guide decision making regarding when to adopt a palliative approach and/or refer to palliative care services for people with advanced non-malignant illnesses. In our culture quality and dignity are respected always and older generation doctors used to propagate continued care by family in home environment for many disease processes when a patient is dependent with limited activities of life. This used to satisfy both the patient and the family. Probably we, the newer generation clinicians should revisit and adopt this for our patients with life limiting illnesses.

THE quality, not the longevity, of one ‘s life is what is important

Martin Luther king

Deepa Muthaiya, C Jeba Jenifa, N Aruldoss, V Menaka

Dean Foundation Hospice and Palliative Care Centre, Old No.73, New No.59, 2nd street, Aspiran Garden Colony, Kilpauk Chennai Tamilnadu 600010 email: deanfoundation@gmail.com / deannaturo@gmail.com

Introduction: While conventional medicine served to alleviate most distressing symptoms, psychosocial symptoms seemed to yearn for a more ingenious, creative approach. Integrative medicine takes into account the whole person - Body Mind & Spirit - including all aspects of lifestyle. It emphasizes the therapeutic relationship and makes use of all appropriate therapies both conventional & alternative.

Aim: To integrate the holistic care approach to “Patients and Carers” to promote their health and well-being through prevention, harm reduction & early intervention, using home-based, preventive and Lifestyle Medicine modalities, thereby providing therapy without expecting pre-determined outcomes.

Methods: An Ayurveda and Naturopathy centre was set up, and various other modalities like acupressure, acupuncture, Reflexology, Attitudinal healing, Yoga, Bach Flower Remedy, Paida Lajin, etc. were incorporated.

Results: The transformation of existential ambivalence into creative living, created shared goals and sense of belonging and connectedness, built mental stability, aroused a sense of hope and wellbeing, kept the individual safe and inclusive within the family, brought about a functioning and positive perspective not of cure but of coping/facing death with courage, and supported psychological state of patient and the caregiver.

Conclusion: Through our interactions, we were able to fully grasp the “milieu” of physical, emotional, social, mental, occupational, logistical, and existential stressors impacting the patient and family.Our experience demonstrates that Complementary and Alternative therapies have a significant role in relieving anxiety, insomnia, pain, and discomfort experienced by palliative care patients and help in calming an overwhelmed or distressed caregiver.

Dr. Lakshmi J¹, Dr. Shoba Nair², Dr. Rajesh Nair³,

Dr. Rajashree K C⁴, Dr. Princy Loius Palatty⁵

*MD Resident, Department of Pharmacology, Amrita Institute of Medical Sciences, Kochi,

²Professor and Head, Department of Palliative Medicine, Amrita Institute of Medical Sciences, Kochi,

³Professor and Head, Department of Nephrology, Amrita Institute of Medical sciences, Kochi,

⁴Assistant Professor, Department of Palliative Medicine, Amrita Institute of Medical Sciences, Kochi,

⁵Professor and Head, Department of Pharmacology, Amrita Institute of Medical sciences, Kochi, Email: lakshmi.jayasrees@gmail.com,

Mobile: 8086787174, 8547046513

Introduction: Chronic pain is a frequent, distressing, and complicated issue faced by patients undergoing hemodialysis (HD), which may be caused by disease per say or by haemodialysis. Data on prescription pattern of analgesics in HD patients will educate healthcare professionals on pain and its management and to form guidelines for the same.

Aim: To analyze the prescription pattern of analgesics in patients undergoing hemodialysis and to assess the Prevalence of pain, etiology of pain, and distress burden among patients undergoing hemodialysis

Methods: Basic demographic details, clinical, hematological and haemodialytic details were collected from October 2022- January2023 from patients undergoing hemodialysis Pain before and after taking analgesics was evaluated retrospectively using the Visual analogue scale and the National Comprehensive Cancer Network (NCCN) Distress Thermometer was used to measure the distress burden associated with chronic dialysis. The minimum sample size required for the study is 117. An interim analysis of 40 patients is presented currently.

Results: Chronic pain was observed in 62.5% of the participants. About 30% of participants received drugs. Commonly prescribed analgesics were pregabalin(15%) and paracetamol (15%). Others received combination of Acetaminophen and tramadol hydrochloride (5%), Gabapentin ointment (5%), Nefopam hydrochloride (2.5%) and Buprenorphine (2.5%). Paracetamol, Buprenorphine, combination of acetaminophen and tramadol hydrochloride were prescribed as and when needed dosages. Patients with significant distress was 45%. Most common aetiology for the pain and distress were musculoskeletal, vascular, neuropathic and needlestick pain. To test the statistical significance of pre and post comparison of VAS score of various analgesic group paired t test will be used.

Conclusions: This is an interim analysis of an ongoing study. The pain relief was only for a short period and not adequate as most of the drugs were prescribed as single dosages or “as and when required’ dosages. This warrants for a regular administration of analgesics depending on pain and disease status in these patients

Ajila Ajith, Jayita Deodhar, Raghu S Thota,

Jyothsna Kuriakose, P N Jain, Shamili Poojary, Shreya Nair, Prajakta Bhagat

Tata Memorial Hospital Mumbai, India

Introduction: Colorectal cancer (CRC) is the third most commonly diagnosed cancer which is associated with increasing morbidity as the disease progresses. The value of timing of palliative care & the quality of life after diagnosis is often underestimated, which can play a pivotal role in improving quality of life in these patients.

Aim: To examine the timing of early palliative care(EPC) referral and symptom prevalence in advanced CRC patients.

Methods: A cross sectional retrospective observational analysis of electronic medical records of all patients with advanced CRC referred for EPC to Palliative care OPD over a 12 month period was done. Demographic characteristics, time from advanced disease diagnosis to referral to palliative care and presenting symptoms were recorded. Descriptive measures were used for analysis, done using SPSS v25.

Result: Of 298 patients screened,150 met the eligibility criteria.108(72%) patients were Males and the median age was 45.7 years. Among patients referred for early palliative care, 129 had pain as the most common presenting symptom, 18 had abdominal distension, 18 had constipation. 71(47.3%) patients were referred to palliative care for EPC on the same day of advanced disease diagnosis, 69 (46%) came within 1 week and rest came within 7 weeks. Goals of care were early palliative care and symptomatic care.

Conclusion: More than 90 % of patients were referred for early palliative care within 1 week of advanced cancer diagnosis. Pain and abdominal distension were the most common presenting symptoms. Further research with prospective study design is needed in integration of palliative care in advanced CRC patients.

Dr. Vishnu Charan¹ , Dr. Sushma Bhatnagar²

AIIMS Delhi

Introduction: The disease burden from non-communicable diseases like COPD & ILD among adults is rapidly increasing in developing countries due to smoking, rising air pollution, etc. There is currently a shortage in the transfer of palliative care services despite the heavy burden of symptoms and severe prognosis. The majority of these patients die in the hospital entering the last year of life, hence there is a requirement to assess the unmet needs of palliative care in end-stage lung diseases.

Aim: To assess the Palliative care needs in Non- Malignant Respiratory Disease attending the pulmonary clinic of a tertiary care center in India using a cross-sectional study design.

Methods: The study is Cross-sectional, Observational and data from Apr-Sept 2022 were collected using Convenience Sampling. There was a total of 80 study participants, out of which there were 30 patients and 50 caregivers.NAT-PD tool was used on patients and caregivers with non-malignant diseases who came to IPD&OPD of the Pulmonary & Palliative Medicine Departments.

Results: All patients had readily available caregivers. Significant difficulty in activities of daily living (73%) and potential psychological distress (87%) were reported by the patients, the majority of which (77%) were directly managed within the Palliative Care team. Significant family distress about the patients’ physical symptoms by caregivers (78%) and significant concern of the patients regarding the impact of illness on the caregivers (87%) was observed, the majority of which (92%) were directly managed. Significant psychological problems (80%) and potential experiencing of grief over the impending death of the patient (74%) that interfered with the caregivers’ well-being were observed. Both these observations were majorly directly managed (82%).

Conclusion: Adapting the NAT-PD tool in practice can help the health care providers significantly improve service delivery and care access by patients and caregivers.

Dr Mohammad Ishak, Dr Spandana Rayala,

Dr Gayatri Palat, Dr Archana Iyengar, Mourya N, Arunya M

Pain Relief and Palliative Care Society, Hyderabad, India

Introduction: The Paediatric Palliative Care program (PPC) in Hyderabad was started in July 2019, within a public tertiary care children hospital. The program is embedded in the service delivery of the hospital providing symptom control and other supportive care for children with life limiting conditions with help of a trained Paediatric multidisciplinary team. The purpose of the study is to look at the initial experiences of the team in providing the services specifically examining the referral patterns, characteristics, and care provided.

Aim: To describe the experience of providing PPC in a public tertiary care children’s hospital.

Methods: A Retrospective review of the charts of children referred to the PPC team over a period of 2 years (Jan2021 - Dec 2022).

Result: There were 849 children were enrolled in PPC. The common diagnosis was cerebral palsy, neurodegenerative, cardiovascular conditions such as complex inoperable heart disease. The common reason for referral was long term care, best supportive care, family counselling and symptomatic management. Most children were followed-up through home care, district & phone follow up as well as hospice care. The presence of a fulltime dedicated team helped improve timely referral, referral pattern and change in attitude by the health care workers.

Conclusions: Our findings demonstrate that there is a definite need for Paediatric palliative care to be incorporated into the Paediatric settings in India.

R. Kumar, Kalpana, Dr Gayatri Palat, Dr Archana Iyengar,

Dr Mohammad Ishak, Dr A Jagadeshwar

Pain Relief and Palliative Care Society, Hyderabad, India

Introduction: The Paediatric home care in Hyderabad is first of its kind facility in India catering for children with life-limiting conditions. Started in May 2022, the facility provides symptom control, respite care and end of life care with help of a trained Paediatric multidisciplinary team.

Aim: To explore the profile of children in Hyderabad who are suffering with cancer and non-cancer children’s, in all kinds of setting, like who are in needy.

Methods: A retrospective review of case files of children in the home care program, during the study period May 2022 to December 2022.

Result: Children referred from tertiary paediatric hospital and Regional Cancer Center in Hyderabad were enrolled in the program. A total of 819 visits were completed till December 2022. At the time of inception there were 19 children were suffering from cancer while 60 with non-Oncological conditions. Currently there are 25 children diagnosed with cancer while 107 with non-Oncological conditions. The common disease conditions were CNS disorders like cerebral palsy, neurodegenerative conditions, acute leukaemia and solid tumours. Total of 19 children died while being enrolled in home care program.

Conclusion: An exclusive Paediatric Home Care facility will result in better follow up children at home as well as improve referrals from hospitals and community for palliative care service.

Dr Pankaj Singhai

Sri Aurobindo University, Indore, (MP) Email: doctorpsinghai@gmail.com; Contact number: 9920828452

Background: Medical Council of India recognised Palliative Medicine (PM) as a speciality and MD course was started in 2012. At present, Every year more than 20 students are enrolling for postgraduate (PG) course in PM. We interviewed Post MD physicians who started PC services to analyse strengths and barriers in developing specialist PC services in India. Method: A survey was conducted using questionnaire consisting of open- ended questions. Findings of survey was compiled by researcher under four categories of SWOT Analysis.

Result: 6 physicians responded to the survey. Strengths identified were robust training during MD, individuals’ passion for subject, supportive administration, interdepartmental coordination and novelty of branch. Weakness faced by these specialists were untrained staff, Lack of financial support, lack of Opioid availability, inadequate referrals, lack of awareness and acceptance of PM as a speciality. Various awareness programs, shared policies and Standard operating procedures and guidance from colleagues and associations were the opportunities. Differences in opinions with respect to clinical practice by oncologists and PC physicians trained with short courses in PC were perceived as threats.”

Conclusion: Robust training with focus on leadership, communication and clinic skills should be the aim for postgraduate training. Government officials, Hospital administration and primary care physician should be sensitised toward need of specialist PC at tertiary centres. National and Global PC bodies should draft policies and guidelines. The limitations and purpose of short courses need to be emphasized.

Dr. Archana Vajjala

PGY -1, Department of Palliative Medicine, MNJ Institute of Oncology and Regional Cancer Center, Hyderabad, Telangana, India. Email: archana. vajjala@gmail.com Phone: 9491111066

Topic: Renal Palliative Care

Introduction: The burden of end stage kidney disease in India has been rising significantly over the last few years leading to increased morbidity and mortality. In spite of a difficult course of illness and high symptom burden, the use of palliative care in patients with end-stage kidney disease is low causing high rates of hospitalization and intensive care admissions towards the end of life

Aim: To explore various challenges encountered in providing palliative care to patients with end stage kidney disease

Case scenario: 85 year male diagnosed with end stage kidney disease with diabetes mellitus, hypertension, heart failure with reduced ejection on alternate day hemodialysis presented with chief concerns of somnolence, severe fatigue, myalgias, oliguria, shortness of breath and pedal edema with eastern cooperative oncology group performance status of 3 and palliative performance scale level of 30%. There is an increased need for palliative care in patients living with end stage kidney disease. But, because of various challenges like lack of education and awareness of renal palliative care among health care professionals, poor understanding about the nature and course of end stage kidney disease by patients and their family members causing reluctance in discontinuing dialysis, lack of effective communication and care coordination among multidisciplinary and interdisciplinary teams makes it difficult to meet these needs for patients and their family members

Conclusion: Providing palliative care to patients with end stage kidney disease often presents various challenges to patients, families and health care providers and require training and awareness to address it.

Sanjeev Kumar, Seema Mishra, Sushma Bhatnagar,

Rakesh Garg, Nishkarsh Gupta, Sachidanand Jee Bharti, Vinod Kumar, Prabhat Malik, Anant Mohan, R M Pandey

AIIMS Delhi

Introduction: Easy availability and increased consumption of tobacco and its related products has lead to high incidence of lung cancer. Multiple studies have been conducted in developed nations for having a better understanding of lung cancer symptoms and its management but only a few such studies in Indian context have been conducted. Our study envisage to assess symptom burden and quality of life in patients of lung cancer.

Aims and Objectives: Primary objective was to assess the symptom burden and quality of life in lung cancer patients while secondary objective was to compare changes in symptom burden and quality of life at baseline and follow up at one and three months.

Materials and Methods: Total 215 patients of lung cancers attending the palliative care clinic and patients referred from lung cancer clinic were recruited. ESAS, EORTC QLQ C-30, EORTC QLQ LC-29 and Global Pain Score were used to assess the symptom burden and quality of life at initial presentation as baseline initial baseline and after providing adequate pain control and symptomatic care we reassessed the quality of life and symptom burden at one month and three months interval.

Results: We found that tiredness was the most prominent symptom followed by fatigue, pain, lack of appetite, depression and anxiety, in decreasing order of prevalance. With effective management in terms of physical symptom, social and psychological support, there was significant improvement in the ESAS score. There was significant improvement in pain score according to Global Pain Score. Symptom burden was significantly high in initial visit which improved at one month and three months follow up. Global health status and functional status was poor and didn’t improve much over the course of follow up.

Conclusion: Based upon ESAS-R, symptom burden was high in patients with lung cancer. Tiredness was a predominant symptom along with pain, emotional distress, lack of appetite and depression. Using EORTC QLQ C-30 and EORTC QLQ LC-29 patients with lung cancer were found to have a poor quality of life. As per Global Pain Score, clinical outcome score had the highest burdensome score and pain had the least burdensome score. Therefore, it is imperative to have an assessment of symptom burden in lung cancer patients to provide them with good quality of life.

Sushma M N, Seetharam M R, Deepak Murthy,

Ramakrishna Mudre, Pushpalatha

Swami Vivekanand Youth Movement, Bangalore, India

Broad category: Minor track- Best Care of the Dying Person: International Perspectives

Subcategories: Communication, education, spirituality and wellness.

Type of presentation: Poster presentation

Introduction: Death is inevitable. In spite of knowing that every living being has to die one day, the word ‘death’ disrupts the mind. One of the ways which could possibly help to assert that death is a normal part of life, find answers to spiritual sufferings, imbibe hope and meaning to life is narration of relatable stories from the history documented in our scriptures and holy books.

Aim: This study aims to find out the following points: How did our ancestors cope with death? What were the beliefs pertaining to death? What were the practices to take best care of a dying person? How relevant are they to be applied in the modern world?

Methods: Compilation from literature review of the available scriptures, books, articles from spiritual leaders and published papers.

Results: There are many anecdotes which can be quoted from the Indian Epics- Ramayana and Mahabharata which are relevant in the context of palliative care today and may benefit patients and caregivers.

Conclusions: The stories found in the Indian Epics can not only be used to provide spiritual and psychological support to people inching towards death but are also useful to inspire the caregivers to provide best possible care to their dying beloved.

Mohan Kumar Thambad, Seetharam M R, Deepak Murthy

Swami Vivekanand Youth Movement

Introduction: Palliative care is recognized under the human right to health and is required for a wide range of diseases. Every year over 40 million people are in need of palliative care and every year more than 9.8 million people are dying. Most of them suffer with unbearable pain and with other psychosocial distress. As the coverage of palliative care services is inadequate, data on number of people requiring palliative care services must be estimated prior to planning of services in a particular area.

Objectives: To do a baseline survey along with awareness generation in the community about home based palliative care services, find out palliative care needs of patients and capture the challenges faced by these patients during the COVID pandemic.

Methods: This study was conducted in one of the wards of Hubballi- Dharwad. Structured questionnaires was used to conduct the survey.

Findings: Survey was conducted in 4747 households by using ODK software in 2021. The survey data shows 3% of the population, that is, 299 individuals needed palliative care. Among those individuals 70% of them were independant for their activities of daily living. There were reservations in attending the public function, family function and touring with these palliative care patients.

Conclusion: Prevalence was high among elderly, lower socioeconomic class, those with less education, and those suffering from agerelated weakness. Many elderly and patients with chronic health issues suffered a lot especially to access healthcare during lockdown. 40% of the families denied participating in the survey due to the possibility of COVID cross infection.

Key words: Home based palliative care, COVID

Mr. Mujeeb Kuttamassery

Life Care Foundation, Kochi, India, Ph no: 9846068962,

Email: Heistiahospital@yahoo.com

Introduction: Most palliative care home care teams faced challenging situations during the pandemic. Shortage of staff, difficulties in reaching out to patients with emergency needs, calls out of working hours, financial constraints, and increased patient load are a few to list. Life Care Foundation In Kerala is an NGO working at the grass root level to provide palliative care services. This NGO’s innovative strategy for utilizing available professionals in a selected area has proved successful in improving palliative care coverage, quality services, economic and increased volunteers satisfaction

Methodology: Periodic teams meetings and discussions

Results: The strategies taken by LCF are 1. Selecting the geographical area/ Panchayat, 2. Calling out interested medical, nursing and allied health professionals interested in sparing 2 hours a week for palliative care volunteering. 3. List the professionals according to the palliative care training previously received. LCF provides PC training to the untrained professionals, 4. Connecting the team with the home care team of that region. When the home care team can’t reach out to patients, the volunteers will address the care needs and update the home care team.

Conclusion: LCF provided more than. ... Emergency home care with the volunteer. The patients, family and volunteers have expressed their satisfaction. Volunteers also shared that they are seen with more respect since volunteering.

Aishwarya Bhaskar, Dr. Seema Rao

Bangalore Hospice Trust - Karunashraya Institute for Palliative Care Education and Research (KIPCER), Bangalore, India, Email: aishwarya.b@ karunashraya.org, Ph: 9742116434

Therapeutic life review is an in-depth systematic and structured process designed to help individuals with life-threatening illnesses find meaning and achieve emotional resolution by recalling one’s life story. It involves not just the review of memories but also the expression of feelings and emotions, identification and dissolution of internal conflicts, realignment of self-limiting worldviews, and reconstruction of life stories that empower and propel personal growth. The following case study is based on the life story of a 61-year-old male patient with carcinoma of the buccal mucosa. Impeded by a speech deficit, he expressed himself nonverbally through reflective texts and drawings. The story of his life, unraveled through a series of illustrations, explored the learnings of his childhood and early adulthood, the challenges of his professional life, the experiences of marital life, and finally, his journey through a life- threatening illness. This intervention helped him to identify new and authentic ways to grow as a person and meaningful values to live by. What emerged were unique stories that enhanced his sense of integrity, agency, and coherence, which he was able to share with his loved ones. He experienced a renewed sense of self-worth and a strengthening of his bond with his loved ones. To summarize, the goal of life review is to alleviate suffering by fostering the individuals’ sense of self-worth and integrity. Any individual nearing the end-of-life can benefit from life review therapy by achieving peace, finding meaning, and acceptance, thereby improving their quality of life. Life review is an important intervention for end-of-life patients and can be used to provide emotional and spiritual support for all recipients.

Dr Anitha Ananthan, Prashanth R.R., Radhika Raman,

Dr Jayita Deodhar, Dr M.A. Muckaden,

Dr Pradnya Talawadekar

Project Co-ordinator, Pediatric Palliative Care Project, Dept of Palliative medicine, Tata Memorial Hospital, Email: childrenspalliativecare@gmail. com, M: 9833879446

Background: Neonatal Palliative care is increasingly gaining importance as a specialty and involves complex decision making and management. Interventions are aimed to relieve the suffering and improve the conditions of the infants living and dying. The collaborative project at a tertiary hospital on Neonatal Palliative Care project was initiated in November 2021.

Aims: Early identification of neonates facing life limiting conditions to provide counselling, symptom relief, medical care and provide end of life care.

Methodology: Depending on the clinical course of the neonate, treatment plans shift from curative to palliative care. Throughout the care the parents and family members are engaged in open discussion & decision making. A team comprises neonatologists, nurses, psychologist and social worker. The parents are allowed to spend quality time with the baby & create memories. Bereavement support plays a vital role in helping the parents to express the loss of their parental role and baby. Support is also arranged through funds raised to ease the burden and encourage investigations.

Results: Through palliative care the frequent interaction in a more humane way provides a better closure. Neonatal palliative care gives satisfaction of providing care even in conditions which are deemed to be incompatible with life or incurable.

Conclusion: It is heartening to see aspects of palliative care being discussed by resident doctors during their training. Having a structured format for enrolment, designated responsibilities among team members, having an area allotted exclusively for counselling, bereavement and end of life care in this first phase, we are stepping into the next phase with more enthusiasm and motivation.

Dr Kesavaraj V¹, Dr Surendrakumar Pingoliya¹,

Dr Amit Sharma¹, Dr Sreeharsh S¹, Dr Ashwin Mathur²,

Dr Yogendra Singhal³, Dr Gaurav Sharma³,

Dr Devdutt Sharma⁴

¹Junior resident,

²Senior Professor and Head of the Department,

³Associate Professor,

⁴Deputy Director, Department of Palliative Medicine, Sawai Man Singh Medical College, Jaipur, Contact: 9447844714,

Email: sreeharsh009@gmail.com

Objective: Assessment of epidemiological characteristics, symptom profile and psychosocial issues in home care patients.

Introduction: Home care is a form of palliative care that provides physical and psychological support to patients suffering from not only advanced cancers but also many non cancer illnesses.

Aim: The aim of this study was to determine the patient characteristics, prevalence of various signs, symptoms and psychosocial issues in patients enrolled in home care.

Methodology: A retrospective, descriptive, cross sectional analysis of medical records from home visits of patients enrolled in home care over a 16 month period was done. Demographic characteristics, diagnosis, presenting symptoms, signs and psychosocial issues experienced by the patients were recorded. Data was analyzed descriptively and statistical analysis was done.

Results: On screening the medical records of 50 patients, the median age was 52 years with slight male preponderance of 26(52%). Of them 48 were cancer patients and 2 were non cancer patients. • Common cancer in patients were, Carcinoma lung- 10 (20%), Carcinoma of buccal mucosa- 6 (12%), Carcinoma breast- 6 (12%), • Common presenting symptom were, Pain- 47 (94%), Fatigue- 45(90%), • Common signs were, Pallor-21 (42%)

, Lymphadenopathy-21 (42%), • Common psychosocial issues faced by patients were, Feeling of being a burden to the family-34(68%), Feeling of vulnerability-30(60%), Concern about mortality-29(58%)

Conclusion: The preponderance of males was slightly more in home care, with 52 years as median age group. Carcinoma of lungs being commonest disease whereas the most common symptoms were Pain and signs were pallor. Feeling of being a burden to the family was the common psychosocial issue found in the patients.

Dr. Ashwin Mathur¹, Dr. yogendra Singhal²,

Dr. Gaurav Sharma², Dr. Devdutt Sharma³,

Dr. kesavaraj V⁴, Dr. surendrakumar Pingloliya⁴,

Dr. amit Sharma⁵, Dr. sreeharsh S⁵

Senior Professor and Head of Department,

²Associate Professor,

³Deputy Director,

Junior Resident -2^Nd Year,

Junior Resident -1^St Year PG Resident, Department of Palliative Medicine, Sawai Man Singh Medical College, Jaipur, Rajasthan,

Email: kesavraj777@gmail.com, Phone: 8438429915

A success story of managing both cancer and non cancer cases in department of palliative medicine in SMSM MC, Jaipur

Introduction: Palliative Medicine is an emerging specialty in India. In SMS Medical College Palliative care OPD was started from 2014 under department of General medicine. After February 2020 a separate department for Palliative Medicine was set up. Our department has a fully functional inpatient, Day Care and outpatient facilities. Home visits and interventional pain procedures are also going on ever since the department was started. In this poster we are assessing the proportion of cases coming to Palliative Medicine outpatient department from 1 Jan 2020 to 1 Jan 2023.

Aim: To study the epidemiology of cancer and non cancer patients attending Palliative Medicine outpatient department in SMS Hospital, Jaipur.

Method: A retrospective, descriptive, cross sectional analysis of medical records from OPD patients enrolled in Palliative Medicine OPD over a period of 36 months from 1 January 2020 to January 2023 period. Demographic characteristics and diagnosis were recorded. Data was analyzed descriptively.

Result: In general out of 11000 total cases 60 % cases are cancerous and 40% are non cancerous Among the cancer cases the major proportions were the below, • 21% of cases were of carcinoma buccal mucosa, • 16% of cases were of carcinoma of breast, • 13% of cases were of carcinoma lung, • Among the non cancer cases the major proportions were the below, • 17% of cases were of degenerative arthropathies, • 13% of cases were of Cerebro vascular accidents, • 10% of cases were of Rheumatoid arthritis, • 5% of cases were of COPD, • 3% of cases were of chronic heart failure, • 66% of the cases were within age group of 40 to 80 years, • 16% of cases were residents of other states.

Conclusion: Department of Palliative Medicine, SMS Hospital, Jaipur is amongst the very few institutes in India where both cancer and non cancer cases are seen in almost equal proportions and patients of almost all non communicable illness are seeking palliative care in increasing numbers. Our department was functioning even during covid 19 years providing the much needed palliative care to patients of pulmonary involvement due to covid infection and its sequelae. Based on our experience, we want to emphasize the importance of including non cancer cases in the Palliative Medicine in all the functioning institutes in India.

Deepak Murthy H J, Seetharam M R, Sushma Shree, Pushpalatha

Swami Vivekanand Youth Movement

Background: Comprehensive Primary Care envisaged under Ayushman Bharat (AB) is expected to deliver a wide range of services spanning preventive, promotive, curative, rehabilitative and palliative care. The working group of Ayushman Bharat has developed and implemented Standard Operating Procedures (SOPs) for providing palliative care in Health and wellness center (HWC), but the actual delivery of such services is likely to face challenges. HWCs are headed by a newly-created post of Community Health Officer (CHO) who lack experience. Also, concepts of palliative care are recently introduced at the grassroot level. This study is to understand to what extent these SOPs have been implemented in the HWC, and analyse the challenges faced.

Methods: An online-based survey on the implementation status, limitations in daily practice and further themes was conducted between October 2022 and December 2022. A minimum of 125 CHOs heading HWCs at different locations are invited to participate. The data is analyzed descriptively using SPSS.

Results and Conclusions: The results are being analysed and will be presented at the conference.

Keywords: Palliative Care, Standard Operating Procedure (SOP), Implementation status, Ayushman Bharat