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27 (
); 453-470

Oral Presentation

Organising Secretary, IAPCON 2021, India
Corresponding author: Umesh Bhadani, Organising Secretary, IAPCON 2021, India.
This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-Share Alike 4.0 License, which allows others to remix, tweak, and build upon the work non-commercially, as long as the author is credited and the new creations are licensed under the identical terms.


Quality of Life and Symptom Burden in Patients with Hematological Malignancies Receiving Hematopoietic Stem Cell Transplantation: A Prospective Observational Study

Dr. Neethu Susan Abraham

All India Institute of Medical Sciences, New Delhi, India

E-mail: . Mobile: 6282190748

Background: Hematopoietic stem cell transplant (HSCT) is one of the most intense forms of treatment which can be threatening to life, but can give the hope to cure. Prospective studies which provide valuable information on QOL are important to give the patients a better understanding of the endpoint further.

Aims: The aim of the study was to assess the quality of life and symptom Burden of haematological malignancy patients at admission to hospital for HSCT, at 1 month and at 3 months following HSCT using FACT-BMT Scale and r-ESAS.

Methods: This prospective observational study was done on haematological malignancy patients who were admitted for HSCT in Dr. B.R.A IRCH, AIIMS. The study subjects were assessed by semi-structured sociodemographic and clinical pro forma and FACT-BMT Scale and r-ESAS at the time of hospital admission for transplantation, on day 30 (~1 month) and day 100 (~3 months) of transplantation.

Results: A total of 68 patients were included in this study. The FACT-BMT scores have decreased from baseline to first follow-up and then increased in the third follow-up. The maximum ESAS mean score was for tiredness among all other symptoms at the baseline, 1 month and at 3 months.

Conclusion: Symptom burden is the highest in the 1st month after BMT, which comes down later. QOL improves with time. It is very necessary to have assessment of symptom burden to provide good quality of life in such group of patients.


Empathy Enhancement in Virtual Role Revers Training

Jochen Becker-Ebel

Yenepoya University, Mangalore and MediAcion, Hamburg E-mail: . Mobile: 491794928186

Empathy is the foremost quality of end-of-life and other health professionals and workers. To enhance an adequate level of empathy is crucial for beginners in palliative and healthcare. Role reveres, like in psychodramatic training, has proven to assist in finding this. To high levels of empathy, which should be called better: ‘over-compassion’ will lead to burn-out. Low empathy will ‘professionalise contact,’ but will be experienced as: cold, institutional and uninterested. With the background of training medical doctors and nurses in different states and universities the speaker explains the value crucial teaching methodology by examples. He will offer in his talk real virtual online practise. Maximum participants: 22; minimum time: 30 min. There first 10 min a report will be given from Yenepoya Medical College, Yenepoya Nursing college and Bangalore University (Montfort College) on three different virtual role-revers trainings given between October 2020 and January 2021. The next 15 min a spontan life-example will be given with a volunteer of the group of participants. The last 5 min will be for relecting the process and questions. To be discussed: can virtual empathy training has an effect on the profession of health care and end-of-life care workers?


Identification of Symptom Clusters in Advanced Head and Neck Cancer Patients Attending Palliative Care Department: An Observational Study

Chaitanya Patil

Kolhapur Cancer Centre, Kolhapur, Maharashtra, India E-mail: . Mobile: 9764167788

Background: The primary aim of palliative care is to provide optimum symptom relief and improve the quality of life. Knowledge of symptom clusters will assist us in achieving the goal and so we conducted a study to find symptom clusters among advanced head and neck cancers attending our supportive care clinic.

Materials and Methods: A prospective study was conducted among 93 patients with advanced head and neck cancer attending the supportive care clinic at Kolhapur Cancer Centre. The study period was from January 2020 to September 2020. The patient’s demographic information, history of the previous treatment taken, presence of recurrence and metastasis along with different symptoms were noted. Principal component analysis with Varimax and Kaiser Rotation was used to extract the different clusters among the sample.

Results: The mean age of the patients was 55.54 A ± 12.64 years with male preponderance. The most experienced symptoms in the past week were pain (92.47%) and sleep disturbances (88.17%). We identified six symptom clusters and there were as follows: Cluster 1 - Fatigue, drowsiness, depression, anxiety and breathlessness; Cluster 2 - Pain and Sleep disturbances; Cluster 3 - Dry mouth and weight loss; Cluster 4 - Facial oedema, Cough, Change in taste, Mouth Sores; Cluster 5 - Diarrhoea only and Cluster 6 - Nausea and Constipation.

Conclusion: Advanced head and neck cancer patients had multiple concurrent symptoms which will need extra attention when assessing the patient in a palliative care clinic. Addressing these will help us prepare management algorithms and in turn help in better management of the patients.


The COVID-19 Pandemic: A New Epoch and Fresh Challenges for Cancer Patients and caregivers - A Descriptive Cross-sectional Study

Raghav Gupta

Dr. B. R. Ambedkar Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India E-mail: . Mobile: 8130622963

Background and Aims: Cancer patients and their caregivers are overwhelmed with features of anxiety and grief. COVID-19 pandemic has added on to the plight by afflicting the cancer care delivery. The descriptive cross-sectional study was conducted to observe the challenges faced by cancer patients and their caregivers and to chalk out strategies to overcome those challenges.

Methods: The descriptive cross-sectional study was conducted from June 1 to July 30, 2020. Internal survey questionnaire was developed. After providing verbal instructions to patients and their caregivers who visited pain and palliative care unit, the challenges faced at the level of various domains (physical, logistic, psychological, socioeconomic and spiritual) were noted. Data were analysed using STATA 14 software.

Results: Out of 500 cases noted, in 310 cases both patients and caregivers (Group P+CG) were present. In 140 only patient (Group P) and in 50 cases only caregiver came (Group CG). Major challenges encountered were suffering from symptoms such as pain, vomiting, dyspnoea (90%), postponement of cancer treatment (80%), fear of contracting COVID infection due to hospital visit (93.5%), lack of accommodation (70%) and lack of spiritual clarity and hope (50%).

Discussion and Conclusion: Major challenges faced by patients were in physical and psychological domain and by caregivers were in socioeconomic domain. It is imperative to recognise the challenges faced. Health-care setups should chalk out strategies to mitigate these challenges so that holistic care could be provided to cancer patients. These will also help in better management for future pandemics also


Neurodegeneration with Brain Iron Accumulation: A Rare and Unique Challenge in Neuro-palliative Care

Sucheta Saha

Consultant Rehabilitation Physician, Institute of Neurosciences Kolkata, Kolkata, West Bengal, India E-mail: .

Mobile: 9136172451

Introduction: Neurodegeneration with brain iron accumulation (NBIA) is a rare heterogeneous group of neurologic disorders characterised by abnormal accumulation of iron in the basal ganglia. It is a relentlessly progressive neurodegenerative disorder, without any cure. Neuro-palliation and rehabilitation can play important role in management of this rare disorder.

Case Description: An 18-year-old male patient presented to the Physical Medicine and Rehabilitation Out Patient Department of VMMC and Safdarjung

Hospital with features of gradually increasing involuntary movement of neck, speech and swallowing difficulties. He was a diagnosed case of NBIA with characteristic ‘Eye of the Tiger’ appearance in MRI. Pharmacotherapy did not show any significant improvement. Injection Botulinum toxin was given for his cervical dystonia and he achieved remarkable improvement in the Fahn- Marsden dystonia scale scoring 2 weeks after the injection.

Discussion: Only a handful of cases are reported from India, who received mostly symptomatic treatment. Medications like Baclofen, Trihexyphenidyl has shown some effect. Some cases are also treated with Deep Brain Stimulation without much improvement. In this case, the effect of Botulinum toxin was noticeable and it improved the quality of life of the patient in conjunction with supportive rehabilitation care. It can be used as an effective adjunct to the pharmacotherapy in this rare neurological disorder.


The Effectiveness of a Nurse Coordinated Home Care Model in Palliative Care

Lucy Quadros

Tata Memorial Hospital, Mumbai, Maharashtra, India E-mail: lucylady@ Mobile: 9022478573

Introduction: Home based palliative care (PC) services are essential to provide PC effectively. A nurse coordinated (NC) home care model can facilitate this.

Objectives: The objective of the study was to determine the feasibility, adherence, effectiveness and acceptability of this model.

Materials and Methods: One hundred and three patients with care givers were screened over a period of 16 months, 101 were recruited for the study. The NC visited their homes, administered tools and continued service every month. Follow-up visits were done as per the need. LGPs were identified and were involved in the patient care.

Results: Feasibility data were collected from healthcare records in person/phone follow-up. Reduction in score of severe symptoms (>7 out of 10) by >2 points on ESAS scale was seen in 4 out of 7 (57.1% times). This model could reduce doctor visits: Deaths at home - 57, hospital - 14, Respite care - 1 and Hospice Care - 3.99% of the recruited families followed up till the end, 87.5% of the GPs approached participated. FAMCARE-2 showed maximum score on domain satisfied, caregiver burden in ZBI was little/no for 95%, good symptom control on ESAS with mean scores for pain was 2, PPSv2 score was 61-80 for majority times and mean scores on EORTC QLQ-C15-PAL were good. Comparative cost analysis for direct patient care was INR 159,707 (INR 1581.26/patient), compared to private doctor home care costs ~ INR 5000/patient.

Conclusion: The nurse coordinated home care model in PC facilitates an interdisciplinary network of care, reduces cost drastically and improves quality of life of patient and family.


Parents’ Experiences with Prognosis Communication About Their Children Suffering from Advanced Cancer Experience from a Tertiary Cancer Centre in India

Jayanthi Iyengar

Department of Palliative Medicine, Tata Memorial Hospital, Mumbai, Maharashtra, India E-mail: .

Mobile: 9930284257

J Iyengar, A Ghoshal, MA Muckaden, A Damani, JK Deodhar, G Chinnaswamy, T Vora, KV Ganpathy

Background and Aims: It is widely known that knowledge of adverse prognosis affects end-of-life decision-making in parents of children suffering from advanced cancer. Many times, oncologists limit prognostic information to prevent distress; whether this practice reflects patient preferences is not known. This study prospectively examines the perceptions of parents of children, suffering from advanced cancer, on the process of prognoses communication.

Methods: Prospective qualitative study and semi-structured interview were conducted to ask parents about their preferences in prognosis communication. The data were analysed using thematic analysis.

Results: Four major themes emerged from 14 interviews: (1) prognosis should be informed: subthemes elucidated parents’ preference to be communicated about prognosis in phases as disease progresses, (2) feelings of the parents: while adverse prognosis makes the parent feel helpless/ sad/hopeless, it also gives them an opportunity to revaluate care goals realistically and (3) method of coping: denial, blaming destiny, spiritual beliefs, psychosocial help from hospital and seeking courage from child (4) preparedness: sharing of prognosis information helps to prepare the parents. We found out that there is a need for a cooling off period between the first consultation when prognosis is communicated and subsequent interview to understand perceptions surrounding it.

Discussion and Conclusion: The study reveals the need for more openness in prognosis communication from oncologists. In depth knowledge on parent preferences will aid the process.


Risk Factors Associated with Lifestyle Cancers in India: A Systematic Review

Adedolapo Komolafe

University of Delhi, New Delhi, India E-mail: . Mobile: 9711474047

Background and Aims: Lifestyle cancers are becoming major cause of global morbidity and mortality. Evidence suggests that 70-90% of cancers in India are related to lifestyle and can be easily prevented by adapting healthier lifestyles. Thus, this review aimed to examine risk factors of lifestyle cancers in different geographical locations in India.

Methods: Three electronic databases, namely; PsychINFO, JSTOR and Medline were systematically screened from December 2017 to February 2018 for literatures on cancer and lifestyle risk factors. The search was limited to India, adults and papers written in English. Results: 2301 articles were identified and ten were reviewed. Smoking and tobacco consumption were strongly related with lung, gastric and oral cancers in South and West India. Furthermore, in West India, Oesophageal cancer was attributed to smoking, alcohol and tea consumption while the consumption of cabbage and sprout was found to the lower the risk of colorectal cancer. In North India, attributions to oesophageal cancer were snuff, smoking, salty tea, hookah, sundried foods and red chilli. No study was found in East India.

Discussion and Conclusion: Non-Hodgkin’s lymphoma, lung, gastric, oral, colorectal, oesophageal and gall bladder cancers have been attributed to lifestyle factors of which smoking and tobacco consumption were common in South and West India while salty tea, hookah, snuff, sundried foods and red chilli were unique to North India. Cabbage, sprouts and Vitamin C were identified having protective properties. It is recommended to organise awareness programmes to help strengthen preventive interventions and reduce cancer incidence.


Enabling Caregivers The Role of Social Workers and Volunteers

Aneka Paul

Golden Butterflies Children’s Palliative Care Foundation, Chennai, Tamil Nadu, India E-mail: . Mobile: 9004712480

Informal caregivers occupy a unique position within health systems as both providers of care adjunct to health-care professionals and recipients of service in the form of knowledge and skill enhancement. The wellbeing of these informal caregivers is vital to their ability to provide care to their patients; hence, it is in the interest of health systems to provide caregivers with sufficient and timely support. Parents of children with life-threatening or life-limiting conditions are particularly vulnerable to a range of negative physical, mental, emotional, social and financial issues. Golden Butterflies is a volunteer-driven NGO in Chennai, working with child-patients and their families. GB Caregivers Connect - lil lives matter, but YOU matter too was initiated in response to stress perceived among parents/caregivers during telephonic counselling. Therapeutic sessions based on the principles of group work are held once in 2 months. Caregivers connect is a safe space where current and bereaved parents/ caregivers can grieve, vent pent-up emotions, stress and anxiety and relate with one other. A social worker facilitates each session, including a topic for the day such as self-care, self-motivation, resilience and the need to equip oneself with skills and information. Caregivers share challenges and tips, discuss strengths and weaknesses and motivate each other. Individual matters such as patient care, family counselling, financial support and information needs are addressed by the Social Worker to the extent possible. Trained volunteers keep accompanying child-patients and/or their siblings engaged in art and recreational activities in a separate room, so that adults may confer openly.


Quality of Life After Palliative Whole Brain Radiation in Patients with Brain Metastases

Begum Yesmin Nureja

Post Graduate E-mail: . Mobile: 9789063303

Background: Brain metastasis is the most common cause of intracranial neoplasm followed by brain primary having very poor outcome. Overall outcome ranges from 9 to 17% with a median period of survival ranging from 8.5 to 12 months from primary diagnosis. As radiation therapy contributes to a wholesome amount of palliative care, by meeting the criterion of symptomatic relief, disease control over a period time and also improvement of quality of life.

Aim: The aim of the study was to assess symptomatic palliation and improvement in quality of life in patients with brain metastasis treated with whole brain radiation.

Materials and Methods: Prospective study, we analysed prospectively 20 patients with whole brain metastasis having various primary sites from August 2019 to July 2020 with symptoms and having multiple lesions were included in the study. The patient was treated with conventional technique (two opposing lateral fields) 300cGy x 10 fractions. We assesses prospectively with EORTC QLQ-30 and QLQ-BN 20 questionnaires at baseline, after 1 month of whole brain radiation and after 3 month of end of treatment.

Results: The median survival among patients was found to be 5.5 months (1-12 months). Our study showed differences in symptomatic relief between baseline and 1st month. There was improvement of symptoms in patients with headache (90% vs. 30%), nauseas (80% vs. 20%) and dizziness (40% vs. 10%). All the patients reported to have managed independently with regular day to day activities.

Conclusion: In patients with multiple brain metastases, whole brain radiation is effective to palliate the symptoms and there by improve the quality of life even though they have limited life expectancy.


Empowering Caregivers in the Context of Health Related Suffering

Elna Joseph

Medical Social Worker Pallium India, Manacaud P.O, Paruthikkuzhy, Thiruvananthapuram, Kerala, India E-mail: elnajosephpalliumindia@gmail. com. Mobile: 9526685949

Introduction: Caregiving in the context of serious illness is a public health concern with many social and economic implications. Approximately 80% of caregivers worldwide are women and they face myriad difficulties in managing the needs of their families. Pallium India launched the Ujjwal Project with the support from the Federation of Malayalee Association of America (FOMAA). The project aims to empower the women palliative care beneficiaries including patients and caregivers through cost-effective interventions.

Methods: Four assessment parameters were assessed and analysed for women patients/caregivers of palliative care patients using a need assessment tool and urgency matrix and interventions were provided in response.

Results: The project team received 74 requests from clinicians and 67 (90.5%) met criteria for support requirements. The major four interventions of the project include the provision of essential/basic amenities, medical support, educational support and/or rehabilitation and reintegration support. Among the 67 identified as eligible, six beneficiaries (9.0%) received assistance in getting basic amenities, 9 (13.4%) received medical support as per their need, 4 beneficiaries (5.9%) received education support and 48 (71.6%) beneficiaries received vocational rehabilitation with cost-effective interventions.

Discussion and Conclusion: Project Ujjwal has helped 67 women caregivers so far and the journey is continuing. Pallium India has advanced this novel effort to drastically improve the quality of life of women beneficiaries including caregivers and patients through quality and cost-effective interventions to take control over their lives with the support they need to promote self-esteem and dignity.

Keywords: Ujjwal, Empowerment, Empathetic approach, Caregivers, Vocational rehabilitation, Quality of life


Palliative Care by Faith Based Organisation Hospitals in India Bridging The Gap During Covid-19: A Mixed- Methods Study

S. Jenifer Jeba

Palliative Care Unit, Christian Medical College, Vellore, Tamil Nadu, India E-mail: . Mobile: 9443019383

Background and Aims: Faith Based Organisations (FBO) in India are key health-care providers to marginalised communities. We studied preparedness and delivery of palliative care (PC) during COVID-19.

Methods: Mixed-method study undertaken with FBOs providing PC in India using online survey and five semi-structured interviews. Descriptive analysis of survey responses and thematic analysis of interviews was done.

Results: Online survey response-rate 46/64 (72%) from hospitals throughout India with 10-2700 (median 100) beds. 30/44 (68%) were in rural or semi- urban areas serving neighbouring villages; 44 provided PC and 52% had dedicated PC teams. PC was offered for cancer and non-cancer conditions; cancer making up > 50% workload for only 15/44 (34%). COVID-19 impact was extensive with interruption of general and PC services for many hospitals. Access to active cancer management was not available for many. COVID-19 induced a mixed community response; fear and stigma, versus inadequate safe-practices for a foreign-disease. PC teams which continued to function though initially fearful, were motivated by visible need from nonavailability of local health services. They responded by adapting services and innovatively addressing wider issues. These were accepted and appreciated by the patients and community because of prior established rapport. PC and community health cooperated, some working collaboratively with government services to provide general community support.

Conclusion: FBOs in India despite challenges worked innovatively to deliver PC and bridge gaps in healthcare, providing essential services to marginalised communities during the pandemic. Further interviews with hospital representatives and patients and carers to broaden insights are planned


Methadone Use for Chronic Pain: A Single-centre Experience

D. Arjun

Trivandrum Institute of Palliative Sciences, Pallium India, Trivandrum, Kerala, India E-mail: . Mobile: 919495548303

Background and Aims: Methadone is new in India and the only available oral strong opioid, other than morphine. Methadone may serve as an effective analgesic among patients with inadequate pain relief on morphine.

Methods: Patients prescribed methadone for analgesia from 2018 to 2020 were retrospectively identified from Pallium India’s pharmacy records. Descriptive statistics were generated for demographics, disease characteristics, methadone use patterns and clinical outcomes for the year 2020. Results: Methadone use increased from eight patients (2018) to 35 patients (2020). In 2020, age of patients ranged from 14 to 80 years and 34.3% were women. Primary diagnoses included cancer (91.4%) and traumatic paraplegia (5.7%). Indications for use included neuropathic pain not responding to conventional treatments (62.9%), opioid toxicities with inadequate pain relief (20%), pain in chronic kidney disease (8.6%), adjuvant use (5.7%) and morphine allergy (2.8%). In 2020, six clinicians prescribed methadone across settings (e.g. clinic, inpatient and home care). Common starting doses were 2.5 mg twice daily (34.3%), 5 mg twice daily (14.3%) and 1 mg twice daily (14.3%). Initial doses ranged from 1 to 20 mg/day and were titrated after 5-7 days as needed. The maximum prescribed dose was 27.5 mg/day. No laboratory or electrocardiogram screening/monitoring was performed. Nor were any adverse effects noted.

Discussion and Conclusion: At our centre, methadone use increased dramatically from 2018 to 2020, likely driven by increased clinician experience and comfort. Our findings demonstrate the feasibility of building local expertise in methadone prescribing and the role of methadone as a critical pain relief medication.


Physician Perceived Confidence in Palliative Medicine after Attending an Online Training Programme

Deepak Varughese

Pallium India, Trivandrum, Kerala, India E-mail: deepakvarughese@gmail. com. Mobile: 918778497207

Introduction: With increased life expectancy and a changing epidemiological profile, the need for palliative care is increasing in India. However, the availability of specialist palliative care services is limited. Short online courses in palliative care principles may be effective in bridging this gap. This study examined physician confidence in several palliative care domains following attendance one such online course.

Methods: The course was conducted on the Zoom Platform. Sessions were held once a week for 19 weeks. Each session was 90 min and included a faculty lecture followed by a case presentation. We conducted a retrospective pre-post-test study. All participants who attended the course in the past year were contacted electronically and asked to rate their confidence in specific palliative care domains before and after the course. We used Wilcoxon Signed-Ranked Test to compare median scores reported as pre- and posttaking the course. Data were analysed in SPSS V23.

Results: Among the 125 people who had participated in the online course, 95 completed the online survey. There was a statistically significant improvement in confidence in the management of pain (P < 0.01), gastrointestinal (P < 0.01) and respiratory (P < 0.01) symptoms. There also was a statistically significant improvement in confidence in the use of morphine (P < 0.01) and in discussing psychosocial issues with the family (P < 0.01).

Discussion: Our study provides preliminary evidence in the ability of online training to increase physician confidence in core palliative care practice principles. Further research is needed to determine the impact of this training on practice and patient outcomes.


Correlation of Palliative Performance Scale with Survival of Cancer Patients Admitted in A Palliative Care Unit

Sachin Bansal

Bhagwan Mahaveer Cancer Hospital, Jaipur, Rajasthan, India E-mail: . Mobile: 9828370236

Background and Aim: The palliative performance scale (PPS) was first introduced in 1996 for measurement of the performance status in palliative care. PPS is a reliable and validated tool used to measure functional performance; higher scores indicate higher functionality. Estimating survival is challenging in the terminal phase of advanced stage of cancer. Patients, families and healthcare organisations would benefit from more reliable prognostic tools. The aim of this study was to correlate survival with PPS for admitted patients in palliative care unit (PCU) in a tertiary care cancer hospital.

Methods: This retrospective analysis is an observational study based on hospital data of 74 patients for the advanced stage cancer who died in hospital between year May 2018 and February 2020. The complete information of each patient enrolled in study including age, gender, date of death, diagnosis, data regarding performance status (Intake, consciousness, ambulation, self-activity and extent of disease affecting daily activity) and survival days, was obtained.

Results: Median survival time was significantly better in patients with PPS more than 60 as compared to those with PPS 40-60 and minimum in those with PPS <40 as indicated by the Kaplan-Meier survival analysis. Strong correlation was seen between PPS and survival time as indicated by correlation coefficient value of 0.6. As PPS value increases survival time also increases significantly.

Conclusion: In our limited sample, we found that if PPS is less than 40% then median survival is less than 5 days in advanced cancer in patients.


Integrated Palliative Care Outcome Scale: Translation and Adaptation for Use in India

Tushti Bhardwaj

Dr. Bhim Rao Ambedkar College, University of Delhi, New Delhi, India E-mail: . Mobile: 9711474047

Background and Aims: Over three decades of palliative care growth though India could give various models of palliative care delivery to the world but unfortunately, we lack indigenous evidence of our complex interventions. India needs valid instruments to evaluate the palliative care services and unmet needs of the patients. Thus, translation and validation of integrated palliative care outcome scale (IPOS) in Hindi were undertaken to make it conceptually equivalent and psychometrically valid for Indian population.

Methods: The standardised methodology spread through five phases, namely, (i) equivalence setting, (ii) forward translation, (iii) backward translation, (iv) expert review and (v) cognitive debriefing was followed. Semi-structured interviews with a purposive sample of seven palliative care professionals and two FGDs were conducted with cancer patients to understand if the concepts in IPOS were recognised by Hindi speaking patients. A standard forward and backward policy was followed for translation. The back translated version was used with six patients for qualitative pretesting of the new Hindi IPOS.

Results: Professionals and patients groups identified few difficult terminology from original IPOS namely concerns, anxious, depression, peace, as much information as you wanted practical problems. Two response categories, namely, occasional and sometimes were nearly overlapping and patients found it difficult to differentiate between the two. Difficult terms were replaced with culture specific words.

Conclusion: The Hindi IPOS has face and content validity for use in clinical practice and research. The findings of this study will be helpful for future validation research to identify difficult phrases which are interpreted differently in various cultures.


Point Prevalence of Dyspnoea, Quality and Effect of Dyspnoea Management in Ambulatory Patients with Advanced Cancer: A Multicentre Study

Pallavi Singh

Tata Memorial Centre, Mumbai, Maharashtra, India E-mail: . Mobile: 9910165835

Background and Aims: Dyspnoea is a common symptom at end of life and the most common symptoms in advanced cancer patients, regardless of the cancer site. The clinical prevalence, quality and management of dyspnoea vary in the country. This study aims at knowing point prevalence, quality of dyspnoea, use of opioids in the management of dyspnoea and quality of life (QOL) in advanced cancer patients. The main objective is to screen and identify the clinical prevalence of dyspnoea, followed by identification of the quality by the Cancer Dyspnoea Scale and identification of the effect of dyspnoea management on QOL of patients. Recording dosage* of opioids/24 h used in Oral Morphine Equivalents (OME) and changes in Visual Analogue Scale at 1, 3 and 7 days.

Methods: This is a prospective observational study on advanced cancer patients referred to palliative care outpatient/inpatient service in a tertiary cancer centre. Cognitively stable participants, ≥ 18 years, who are able to complete the questionnaire. Patients with potentially curable disease and/or not available for follow-up will be excluded. Variables- Demographic details and medical history of participants collected. Descriptive statistics, ANOVA and correlation coefficients will be used to find the effect on dyspnoea. All analysis will be performed on SPSS.

Results: This is single centre data of an on-going multicentric study. The final results of a single centre will be published at the time of the conference.

Discussion and Conclusion: Dyspnoea is a common and distressing symptom and management of dyspnoea is not standardised in oncology palliative care. This study provides data on the prevalence and gaps in dyspnoea management.


Palliative Care development in Western Nepal: The Palliative Care Centre at International Nepal Fellowship Green Pastures Hospital, Pokhara

Ruth Powys

Green Pastures Hospital, International Nepal Fellowship, Pokhara, Nepal E-mail: . Mobile: 9779843395335

Background and Objective: The 2017 Government National Palliative Care Strategy (NPCS) committed to delivering Palliative Care (PC) within 10 years to all in need, whatever their condition and wherever they live. NPCS proposes PC centres of excellence providing clinical leadership, education and research to facilitate appropriate PC development. INF’s new PC centre at Green Pastures Hospital (GPH), Pokhara, Nepal’s second city, will serve Western Nepal. This paper describes its early development.

Methods: Review of GPH PC and Chronic Disease Centre development 2013-2021, mapping key milestones.

Results: 2013-2016: Early Service: Community service and two inpatient beds established with clinical research into chronic leprosy pain management and PC education program for health care workers. 2016-2018: Model Development: Needs assessments identified PC needs for non-cancer non-communicable diseases were best served by an integrated chronic disease management approach. Children with cerebral palsy admitted for rehabilitation had PC needs requiring an integrated PC/rehabilitation approach. New programme of education for community groups established. Research expanded to include communication skills programme and assessment tool translation. 2018-2020 Infrastructure development: Construction of purpose build PC centre and service expansion with support of two UK charities. 2021 On-going expansion: ten adult and four paediatric beds, day therapy, outpatient clinics and telemedicine became operational. Community service expanded. UK Aid Match Funding secured for rural community PC model development for Western Nepal (2021-2024).

Discussion: GPH PC centre represents an important milestone in the NSPC implementation. The facility will enable appropriate evidence-based models of PC in Nepal to be developed and evaluated.


Implementation of Family Medicine Training Programs Towards Strengthening of Primary Healthcare in India

Raman Kumar

Specialist Board Family Medicine, National Board of Examination,

Academy of Family Physicians of India, Journal of Family Medicine and Primary Care E-mail: . Mobile: 9350812859

Topic (Suggested Keynote) Family medicine is the internationally recognised nomenclature for the academic discipline, knowledge domain and medical specialty of primary care doctors, working in the community setting. In 2016, 92nd report of the department-related parliamentary standing committee on health and family welfare on the Functioning of the Medical Council of India has emphasised the need for postgraduate in family medicine. The committee report has noted that the medical education system is designed in a way that the concept of family physicians has been ignored. The committee recommends that the Government of India in coordination with State Governments should establish robust PG Programs in Family Medicine and facilitate introduction of Family Medicine discipline in all medical colleges. This will not only minimise the need for frequent referrals to specialist and decrease the load on tertiary care but also provide continuous healthcare for the individuals and families. The successive National Health Policies of Government of India NHP 2002 and 2017 have emphasised the need of family medicine training in India. The recently enacted National Medical Commission Act 2019 has mandated NMC to promote training in family medicine at both undergraduate and postgraduate levels. Therefore, in the background of the stated policies of the Government of India the concept of family doctors, which was earlier neglected, should be institutionalised within the mainstream medical education system of India. About Speaker Dr. Raman Kumar Convener, Specialist Board in Family Medicine NBE MOHFW GOI, National President AFPI, President WONCA SAR, Editor - JFMPC.


Effects of Mindfulness Integrated Cognitive Behavioural Intervention with Cancer Palliative Care Professionals A Pilot Intervention Study from South India

Amanpreet Kaur

George Institute for Global Health India, New Delhi, India E-mail: . Mobile: 9868349221

Background and Aims: Being a cancer palliative care professional is challenging, demanding and stressful. In recent decades, there has been a growing interest in mindfulness to improve overall well-being of health-care professionals. Mindfulness Integrated Cognitive Behavioural Interventions are seen to be more practical, flexible and understandable than traditional psychological therapies alone. There is a dearth of studies in India with no psychological intervention carried out with the cancer palliative care professionals till date. Aim was to examine the effects of Mindfulness Integrated Cognitive Behavioural Intervention (MICBI) with cancer palliative care professionals working in Bengaluru city of South India.

Methods: A single group study design was adopted with pre-, post- and 3-month follow-up assessment with a sample of 25 participants working full-time at a Hospice. The MICBI program was conducted for six sessions, held once a week and for a duration of 2-2 AlA h. Outcome variables were professional quality of life measures, psychological well-being score and mindfulness skills score using Professional Quality of Life Scale-Version 5, Psychological Well-Being Scale and Five Facet Mindfulness Questionnaire. Wilcoxon signed-rank test and Friedman test were used for analysing differences between pre- post- and follow-up data.

Results: MICBI program could significantly reduce burnout, secondary traumatic stress; improve compassion satisfaction, psychological well-being and mindfulness skills; and treatment gains were seen to be maintained at 3-months follow-up.

Conclusion: MICBI program was found to be feasible and effective for cancer palliative care professionals with implications in training, practice and future research.


Analysis of Parenteral Morphine Titration for Pain Relief - A Retrospective Study

G. Reshma Sreekumar

Trivandrum Institute of Palliative Sciences, Pallium India, Trivandrum, Kerala, India E-mail: . Mobile: 9995073003

Background and Aims: Severe pain is a common symptom in serious illness. The use of strong opioids (e.g. morphine) is often indicated per international cancer and non-cancer pain management guidelines. Many patients have poor access to morphine for a host of reasons (e.g. lack of opioid distribution, inadequate healthcare worker pain management training and opiophobia). Immediate relief for those who are suffering from severe pain is a human right and critical to preserving patient dignity.

Methods: Between 2020 and 2021, we conducted a retrospective chart review among patients who received parenteral morphine for pain using Pallium India’s pharmacy records. We collected demographics, primary disease characteristics, parenteral morphine use patterns (dose, schedule and monitoring) and clinical outcomes (adverse events and efficacy). Descriptive statistics were generated.

Discussion and Results: We prescribed opioids for 546 patients. Among these, 31 (5.6%) patients received rapid parenteral morphine titration for immediate pain relief. Twenty-one were men and ten were women. Twenty- eight were diagnosed with cancer and three non-cancer illness. Dosage ranged from 1.5 mg to 15 mg. 22 had good pain relief, nine partial pain relief. No patients reported significant adverse effects. The most common side effect was sedation, reported by 67.7%. No patients experienced respiratory depression.

Conclusion: Parenteral morphine is a useful analgesic to provide rapid pain relief for patients with severe pain and is safe to administer in outpatient settings.


EMLA Cream and Distraction for Pain Prevention during IV Cannulation in Children

Poonam Subhedar

BSc Nursing, Bai Jerbai Wadia Hospital for Children, Mumbai,

Maharashtra, India E-mail: . Mobile: 9833548056

Introduction: Intravenous cannulation, most common in hospital set-up, is especially difficult in children and generates fear, excessive crying and noncooperation. Pain can be prevented with local anaesthetic cream, distraction and presence of parents during procedure. However, it is not commonly done in paediatric hospitals in India.

Methods: Children were chosen randomly for procedural pain for IV cannulation. The paediatric palliative care nurse introduced herself and the project. Children or parents were asked about pain during previous IV cannulation. EMLA cream was applied to 2-4 sites for 45-60 min. Age appropriate distraction (soap bubbles, games and story narration) was used during procedure. One or both parents were allowed to be present during the procedure. Post-procedure, number of attempts, pain severity and child/ parent satisfaction were recorded.

Results: Twenty children with thalassemia (16), cancer (3), other (1) and aged 5 months-14 years (M-11 and F-9) were included in the study. During previous cannulation, average 2.5 attempts were done, with mild, moderate and severe pain in 9, 6 and 5 children, respectively. After EMLA application and diversion, average number of previous attempts was 2, with no pain, mild, moderate and severe pain in 8, 7, 2 and 3 children, respectively. Child preference for undergoing procedure with EMLA and distraction: 10-strongly agreed, 3-agreed, 1-neither agreed nor disagreed and 6-too young; parents preference: 11-strongly agreed, 6-agreed and 3 neither agreed/nor disagreed.

Conclusion: Warm interaction followed by EMLA cream application, parental presence and distraction during procedure prevent IV cannulation pain and should be offered to all children.


Palliative Care as Part of Universal Health Coverage in Nepal: A New Model in Development Following Recent Needs Assessment Studies

Daniel Munday

University of Edinburgh, Edinburgh, Scotland E-mail: daniel.munday@ Mobile: 447473091206

Background and Aims: Palliative care has been identified as a key element of Universal Health Coverage (UHC). The Nepal Palliative Care Strategy includes commitment to provide palliative care in district hospitals and village health posts including in remote areas. This paper reviews recent studies undertaken which are informing the development of palliative care for rural Nepal.

Methods: A review of needs assessment and palliative care development projects in Nepal undertaken between 2015 and 2019.

Results: A national survey of palliative care in 2015 reported 12 services existed, mostly in Kathmandu and focused on cancer. Two surveys of patients with palliative care needs on hospital wards found that the commonest condition requiring palliative care was COPD followed by other non-communicable diseases (NCD). In Nepal, only 8% of deaths are from cancer. Two rural community surveys of non-communicable diseases and palliative care need covering over 4000 people identified that between 3.0% and 4.1% of the population have palliative care needs. Focus groups of non-physician rural health-care professionals (HCP) found that they were aware of patients with advanced illness but they lacked the knowledge and skills to provide them with effective care; a pilot project of palliative care training increased their knowledge and confidence. Rural hospitals have expressed desire to receive palliative care training.

Discussion and Conclusion: High levels of need for palliative care exist in Nepal, principally for patients with non-cancer illnesses. HCP in rural areas are keen for training. Models for effective rural palliative care as part of UHC are currently in development.


Clinical Presentation and Symptom Management of Cholangiocarcinoma: Our Institutional Experience

Amit Gupta

Department of Surgery, All India Institute of Medical Science, Rishikesh, Uttarakhand, India E-mail: . Mobile: 9891981331

Background and Aims: Clinical presentation of cholangiocarcinoma is usually late, with obstructive jaundice, generalised weakness and weight loss. Complete surgical resection is the only potential cure but is not possible due to advanced stages at presentation. Palliation of symptoms is important to improve nutritional status, quality of life and general well-being. In this study, we present symptom management of cholangiocarcinoma patients.

Materials and Methods: Patients with radiological findings suggestive of cholangiocarcinoma were included in the study. Parameters included location of tumour, total bilirubin, tumour markers (CEA, CA 19-9 and CA 125), clinical symptoms and palliative procedure performed.

Results: Sixty-seven patients of cholangiocarcinoma were included in the present study. Age ranged from 18 to 80 years (mean - 55.7 years). Female to male ratio was 2.72:1. Presenting symptoms were pain upper abdomen, loss of appetite, loss of weight and yellow discolouration of eyes. Jaundice was present in 59 patients. Fifteen patients had distal, 42 had perihilar and ten intrahilar location of malignancy. Five patients had Stage I, 12 patients Stage II, 15 had Stage III and 35 had stage IV disease. Total bilirubin ranged from 2.6 to 43 mg/dl (Median 18). Tumour markers were CEA: 0.45-417 ng/ml; CA 19-9: 6.01-29694 IU/ml and CA 125: 5-270 IU/ml. 35 patients with jaundice were considered for percutaneous biliary drainage and six underwent ERCP and stenting. Patients with unresectable disease were referred for gemcitabine and cisplatin based chemotherapy.

Discussion and Conclusion: Majority of cholangiocarcinoma patients present with metastases or with advanced locoregional disease. Palliation of symptoms should be considered for such patients.


To Study The Clinical Correlation Between Chemotherapy Induced Peripheral Neuropathy With Deficiency of Vitamin Bi2 And Vitamin D3

Rabiya Abdu Razak Malayil

Junior Resident of MD Palliative Medicine E-mail: rabia.malayil@gmail. com. Mobile: 8750916227

Background: Prevalence of CIPN has been estimated to be 68.1% in the 1st month after platinum/taxane based antineoplastic agents, 60% patients develop coasting phenomenon at the end of cancer treatment. CIPN poses great challenge for oncologists to warrant a reduction in the dosage or stop the chemotherapeutic course. Therefore, prophylactic measures to prevent CIPN need to be addressed early in the course of treatment.

Aim: Improvement in CIPN symptoms on VAS scale and SLANSS scale through selective nutritional supplementation.

Methods: Total 50 patients with clinically diagnosed CIPN were enrolled in the study, with informed written consent; all patients underwent baseline workup of VitaminB12 and Vitamin D3 levels. Two groups - deficient group was given Gabapentin and deficient component (Vitamin B12/ Vitamin D3 or both) whereas the non-deficient group received only Gabapentin as primary treatment. Both the groups were followed up at an interval of 6 months with SLANSS and VAS scale for assessment of neuropathic pain.

Results: Total 50 patients (26-Ca Breast, 16-Ca Lung and 8-Ca Ovary cases) they were followed up for a period of 6 month. Comparative statistical analysis was done between Gabapentin treated cases and those with Gabapentin+Nutritional supplementation cases at 6 month. The SLANSS pain score (10.57v5.24, P < 0.05) and VAS score (3.91v2.88, P < 0.05) showed significant improvement between Gabapentin alone and Gabapentin+Vitamin B12 at 6 months follow-up. Similarly, SLANSS score (10.57v6.7, P < 0.05) and VAS score (3.83v2, P < 0.05) showed significant improvement between gabapentin alone and Gabapentin+VitaminB12+VitaminD3 cases at 6 months follow-up.

Conclusion: Current data show that the treatment of CIPN using Gabapentin+Nutritional supplements shows significant improvement in reduction of pain as compared to Gabapentin alone cases at 6-month followup. We can recommend the use of nutritional supplements along with Gabapentin to mitigate the CIPN symptoms in cancer patients.


Clinical and Blood Parameters Predicting Survival of Patients with Cancer

Sweety Gupta

Department of Radiation Oncology, All India Institute of Medical Science, Rishikesh, Uttarakhand, India E-mail: .

Mobile: 9891981332

Background and Aims: In developing countries, about one third of population will be diagnosed with cancer during their life time. Oncologist always rely mixture of clinical experience and intuition when calculating prediction of survival. The aim of this study was to identify factors predicting survival of advanced cancer patients.

Methods: This study was single centre study. Ethical approval was taken from Institute Ethical Committee. Frequency and percentage of bio-demographic variables and clinical variables were calculated. Survival analysis was done using Kaplan-Meier method. We calculated mean survival and survival time for all the patients. Putative factors affecting prediction of survival were examined using multivariate logistic regression analysis.

Results: Study cohort consisted of 215 patients of various cancers. Mean age of participants was 53.46 years. Most of patients were female gender (68.8%), have gall bladder cancer (70.7%) and diagnosis with Stage 4 (74.9%). Most of patients were have one metastatic site (40.5%) and no dyspnoea (81.4%). Total mean survival days for participants were 62.65. About 46.5% participants were found alive during follow-up and about 8.8% were alive more than 180 days.

Discussion and Conclusion: In the present study, we identified that patients with poor performance status, low BMI, more number of metastatic sites, comorbidities and shorter duration of cancer had less survival. Furthermore, blood parameters showed significant hazards value indicating that these are few factors which can be a part of survival prediction keys for overall assessment of patient survival.


Blood is Thicker than Water: How Cancer Can Trigger Guilt, Shame and Empathy in Caregivers

J. Alafia

Licensed Clinical Psychologist in Private Practice E-mail: alafia.jeelani@ Mobile: 8884206831

Introduction: Families grappling with a cancer diagnosis and impending death can bring to the fore, feelings of guilt, shame and empathy in caregivers. These reactions are not just limited to the diagnosis, but toward other family members, role-shifts, formation of new alliances, uncovering long-standing issues and change in interaction patterns. Therefore, the aim of this paper is to present a therapist’s reflections on how family dynamics take a turn and evoke different emotional reactions in caregivers leading to both negative and positive outcomes.

Case Description: A single-case observational design was used; therapist case notes, personal journal and supervision notes are used to present data. The index patient was a caregiver (youngest daughter) to her father, a 74-year-old gentleman with lung cancer and brain metastasis. He had a history of nicotine dependence and IPR issues with wife. The family also included an older sibling and the mother, both involved in different aspects of caregiving. The siblings were receiving conjoint sessions over a period of 6 months to deal with individual and family issues.

Discussion: Empathy between family members caring for a dying patient has a positive effect on both family and the patient. Being aware of caregiver reactions, a thorough family assessment, facilitating healthy communication between members, negotiation and purposeful self-care are implicated in the psychological management of families. This case highlights how fostering empathy for the dying patient and other family members, reducing feelings of guilt and shame go a long way in facilitating psychological adaptation.

Keywords: Cancer caregivers, Families with dying patient, Shame and guilt in cancer, Empathy between family members


Understanding Total Pain in An Adult Advanced Cancer Patient A CASE REPORT

T. T. Shinde

Project Medical Officer, Respite Palliative Care, Tata Memorial Hospital, Mumbai, Maharashtra, India E-mail: .

Mobile: 9324204882

Introduction: Dame Cicely Saunders defined the concept of total pain as the suffering that encompasses all of a person’s physical, psychological, social, spiritual and practical struggles. (1) Complete pain relief may not possible till we address all components of pain. Any individual may experience pain in each domain at a different level. (2) Sometimes other components of total pain weigh more on physical pain. Many times, we miss on these aspects of pain in busy outpatient department. Respite palliative care unit could be a good place to explore in-depth about such hidden causes of pain.

Case Presentation: A 59-year-old widow, from Muslim community, resident of Mumbai had repeated visits to the outpatient department for management of pain crisis. She preferred visiting the hospital alone. Up- titrating analgesics, palliative radiotherapy and nerve block helped her to a certain extent but could not provide her satisfactory pain control. As the severity of pain was not congruent with the extent of her disease, we further decided to explore on other component of pain, which needed time and special attention to other details related to her psychological and social situations. We admitted her to explore this further at Respite Palliative Care Unit.

Conclusion: This case report emphasises the importance of total pain and need of respite palliative care units where sufficient time can be spent with patients and their families to identify issues of terminally ill patients. This can help in providing better palliative care and holistic management for such patients.


I, Me, Myself: Reflections on Working With a Challenging Patient at a Hospice

D. R. Nayana

Department of Palliative Medicine, Karunashraya Institute of Palliative Care Education, Bengaluru, Karnataka, India E-mail: . Mobile: 9686343688

Introduction: Empathy is the cornerstone of therapy; however, therapists can find it challenging to empathise with patients who have a sense of entitlement, lack of insight and empathy for others. Dying patients can induce feelings of helplessness and guilt in novice therapists. Therefore, the aim of the present paper is to present a therapist’s reflections on empathy or the lack of it while working with terminally ill cancer patients.

Case Description: A single-case observational design was employed; case record, personal journal and supervision notes were used to present data. A 70-year-old male English Professor, married with no children, belongs to an urban background and diagnosed with cancer in rectum. He had a history of alcohol dependence and pathological gambling and remitted for 10 years; currently receiving palliative care treatment and has undergone counselling sessions for about 3 months (n = 7). He was argumentative, often competing with others and making derogatory comments with the treating team.

Discussion: Patient personality profile can become a barrier in building rapport, sustaining a healthy therapeutic relationship, empathising and ultimately affects patient outcomes. This also poses as an ethical dilemma for the therapist, often inducing feelings of incompetency, helplessness and guilt. Being aware of one’s own reactions, understanding the personality profile of the patient, appropriate assessment and psychiatric referral, supervision and self-care are implicated in the psychological management of such patients. This paper provides practice-based evidence for the underlying meaning behind challenging behaviours and offers guidelines in working with them.


The Mind’s Eye: Patient and Caregiver Narratives and its Effect on Empathy in Counselling

Maria Sonia Louis

Bangalore Hospice Trust - Karunashraya, Bengaluru, Karnataka, India E-mail: . Mobile: 9739801877

Introduction: Patient and caregiver narratives are important in the counselling process, offering the therapist their perspectives on the person and the illness. Empathy is a central skill common to all therapies; however, it can get influenced by these narratives. Counsellor neutrality is often an underrated skill that goes a long way in deciding how patients and caregivers adapt to the cancer disease. Hence, the aim of this paper is to understand the role of patient and caregiver narratives on empathy or the lack of it while working with terminally ill cancer patients.

Case Description: A case-series design was employed; case records and personal reflections were used to present data. Case A was a 58-year-old woman diagnosed with multiple myeloma and underwent ten sessions; with the primary caregiver being her younger son. Case B was a 35-year-old woman diagnosed with Carcinoma Ovary and underwent 13 sessions; with the primary caregiver being her elder son. Case C, a 24-year-old woman diagnosed with Carcinoma Liver and underwent seven sessions; with the primary caregiver being her fiance.

Discussion: Patient and caregiver narratives, because of their subjective nature, can become a barrier for the counsellor in feeling empathy, demonstrating it and being able to do it consistently without taking sides and ultimately affects outcomes. Being aware of one’s own reactions, maintaining neutrality, reflective practice and supervision are implicated in dealing with personal reactions toward patients/caregivers. This paper provides practice-based evidence to counsellors on the importance of neutrality as an aid in empathy.


Associations of Neurotransmitters and Cancer Related Fatigue and Effects of Drugs Modifying It

Amit Jain

Consultant Pain and Palliative Medicine E-mail: dr.amitjain@rediffmail. com. Mobile: 9212850560

Introduction: Cancer-related fatigue (CRF), defined as a distressing persistent subjective sense of physical, emotional or exhaustion related or cancer treatment. CRF is most common symptom of the patient both during and after treatment. However, aetiology is still unknown, one hypothesis is dysregulation of several physiological and biochemical systems esp the HPA axis disruption, 5HT dysregulation, Cytokines dysregulations and circadium rhythm disruptions.

Objectives: The objectives of the study were to study Effect of Lactium and L-theanine capsules on HPA axis and further effect on quality of life by assessing the level of CRF with Functional Assessment of Cancer Therapy Fatigue Scale (FACT-F). M n M-Descriptive cross- sectional study on patients receiving neoplastic therapy. Study place: conducted at DNSH, NDelhi. Study period: study period was 6 months from June 20-Dec 20. Inclusion criteria confirmed tissue diagnosis of cancer 2. Age: >15 years 3. Gender: M/F Fatigue 4 on the Edmonton Symptom Assessment Scale (ESAS; a 0-10 scale). Two other fatigue related symptoms (pain, nausea, loss of appetite, depression, anxiety or sleep disturbance) at a score of 4/10 (ESAS) 4. Patients receiving RT and CT.

Results: Pts receiving lactium with L-theanine shows improve in symptom distress with better scoring on functional assessment of cancer therapy fatigue scale (FACT-F).

Conclusion: Alteration in HPA axis is a mechanism in producing CRF. HPA axis is a potent regulator of cytokines productions and has potent anti-inflammatory effects. Lactium binds with subunits of GABA receptors and activates it and prevents stress induced increase in plasma cortisol. L-theanine reduces the levels of salivary amylase which is marker for sympathetic nervous system activity.


Nurses Curriculum Recommendations to Integrate Palliative Care Education to Undergraduate and Postgraduate Nursing Education EduPal Project

Petra Auramo

University of Helsinki, Helsinki, Finland E-mail: . Mobile: 358504114905

Introduction: EduPal project is a flagship project in Finland that aims to develop nurse’s palliative care education curriculums. The project is funded by the Ministry of Education and Culture. Research has revealed need of palliative care education in Finland and globally. In EduPal nationwide curriculums for both undergraduate and postgraduate nursing education were developed. Education was also piloted during the project.

Case Description: The curriculums were created based on systematic literature reviews, recommendations (EAPC, ICN, Ministry of Social Affairs and Health) and comprehensive mixed method data collected in the project. EduPal project was done in collaboration with multidisciplinary expert groups, working life experts, organisations, unions and various associations. The whole project was conducted in close collaboration with working life stakeholders and used active continuous evaluation process to improve the education.

Discussion: As a result, a curriculum recommendation was developed (Picture 1) for undergraduate nursing education, including required competencies, recommendations of teaching hours and methods. A national curriculum for palliative care specialisation for nurses (30 ects) was developed and 20 universities of applied sciences launched the education. Over 300 nurses are graduating from the education. A national curriculum for palliative care clinical specialist nursing (Master’s degree) was developed and piloted in the project. Developing education enables learning pathways that ensure the availability of highly qualified professionals in the field of palliative care. Curriculum recommendations can be used to promote systematic implementation of palliative and end-of-life care education.


A Better Death: The Role of Do Not Attempt Resuscitation Decisions in a Tertiary Care Paediatric Hospital

Smriti Khanna

Palliative and Supportive Care Unit, Bai Jerbai Wadia Hospital for Children, Mumbai, Maharashtra, India E-mail: . Mobile: 9892008228

Background, Aims: Doctors often face a dilemma about whether to perform Cardio-Pulmonary Resuscitation in patients with poor chance of a reasonable quality of life if they survive. In May 2020, the ICMR (Indian Council of Medical Research) published guidelines on Do Not Attempt Resuscitation (DNAR). The BJ Wadia Hospital’s End of Life Care (EOLC) committee implemented the document and DNAR form into its EOLC policy. The aim of our study was to analyse the role DNAR orders played in children’s quality of death.

Methods: A retrospective study was undertaken of medical records of children whose families signed DNAR forms. Data collected included: age, gender, diagnosis, referring department, place of death, EOLC given and survival.

Results: From May 19, 2020, to February 12, 2021, 40 families signed DNAR forms. Twenty-two (55%) children were <1 year (M: F 22:18). Diagnoses ranged from congenital conditions (30%), infections (20%), neurological (12.5%), heart disease (12.5%) and cancers (17.5%). Most referrals came from the paediatric ICU. Fifteen children were shifted from PICU to ward after DNAR orders, so that the child could spend more time with family. Compassionate extubation was done for seven children. Nine children were sent home for EOLC, of which five passed away at home. Two children were COVID positive and in isolation.

Discussion and Conclusion: The incorporation of DNAR guidelines into hospital EOLC policy helps humanise the last days of the dying child and facilitates goals-of-care discussions. Interdisciplinary team meetings enable consensus-based decision-making among the treating team and family. Consent of both parents is ideal for DNAR orders.


Planning and Implementation of a Cancer Control Program with Integration of Primary Health Care and Palliative Care Services in a District in Kerala

Sunitha M. Daniel

National Health Mission, General hospital Ernakulam, Kochi, Kerala, India E-mail: . Mobile: 919526276622

Background: Cancer, the second leading cause of death globally, accounted for an estimated 9.6 million deaths in 2018. More than 70% of all cancer deaths occur in low- and middle-income countries, where resources available for prevention, diagnosis and treatment of cancer are inadequate. Kerala has a well-integrated primary healthcare and palliative care services. We describe an approach that integrates cancer prevention, early detection and supportive care by utilising existing primary health and palliative care services.

Methods: We planned and executed the program funded by local-selfgovernment over a period from July-December 2019, which targeted cancers of breast, cervix and oral cavity. The strategies implemented include; improving cancer literacy, awareness of early warning signs of cancers among primary care physicians, empower specialists in diagnostic procedures, prompt referral, timely initiation of treatment and integrate cancer surveillance with palliative care network.

Results: The program was able to train 700 healthcare workers and 80,000 members of public. 575 biopsies performed over 6 months out of which 53 were malignant and eight premalignant. Median age of diagnosis was 60, 55% were female. About 48% of the total cancer diagnosis was oral cancer. Biopsy was reported usually in 6 days. About 86% of patients with a cancer diagnosis were contacted by community palliative care nurse at diagnosis.

Conclusion: Palliative care and primary care services can be successfully integrated into oncology practice. Further research is planned to evaluate the long term goals of down-staging cancer, reducing the time period from diagnosis to treatment and improvement of cancer care outcome.


Effectiveness of a Palliative Care Resource Toolkit for Covid-19 for Low and Middle Income Countries on Health Care Workers Knowledge and Confidence Levels

Sunitha M. Daniel

National Health Mission, General Hospital Ernakulam, Kochi, Kerala, India E-mail: . Mobile: 919526276622

Background: Integrated palliative care (PC) has an important role in supporting those affected by the COVID 19 pandemic. Communication, goals of care, symptom control and holistic support is needed for patients and families with multi-morbidity and populations in isolation. Equipping healthcare workers (HCW) with core PC competencies is essential. We developed and disseminated a palliative care in COVID-19 resource toolkit for LMICs comprising an e-book, webinars and ECHO platform interactive sessions.

Objective: The objective of the study was to evaluate the impact of the resource toolkit on the knowledge and confidence levels of HCWs.

Methods: Participants registered for training package completed a pre- and post-course questionnaire along with narrative feedback.

Results: Three hundred and eighty-eight participants from eight countries, 24 Indian states; 27% male; median age 33 (20-65); 46% nurses and 27% doctors. There is statistically significant improvement in all factors assessed from pre-test to post-test (P = 0.000). Mean difference in knowledge and confidence in communication, goal setting, physical symptoms and distress management is as follows: 2.57 CI 95%; (2.21-2.93), 2.34 CI 95%; (1.992.68), 2.72 CI 95%; (2.36-3.07), 2.55 CI 95%; (2.20-2.90), 2.42 CI 95%; (2.05-2.79), 2.38 CI 95%; (2.01-2.75), 2.88 CI 95%; (2.51-3.24) and 2.63 CI 95%; (2.27-2.99).

Conclusion: The Toolkit when combined with online interaction can support the integration of PC competencies in healthcare workers many of whom have no previous exposure to PC. Further study is planned to assess the educational impact on practice.


The Palliative Emergency Kit, an Effective Way to Manage Anticipatory Symptoms in Patients Nearing the End of Life in a Community Palliative Care Setting

Sapna Mathew/Joseph

Bangalore Baptist Hospital, Bengaluru, Karnataka, India E-mail: . Mobile: 9632786553

Background: The practice of providing anticipatory medicines to the patient’s family was started as a felt need by the Bangalore Baptist Hospital palliative care team to alleviate unnecessary anxiety at crisis times and emergency room visits for home care patients. 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) 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. 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 March to December 2020 was done. 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: Fifty out of 58 (85%) patients died within a month of having received the EK. Although only 28% patients used the EK (with Lorazepam as the most frequently used drug), the number of patients who visited the hospital significantly reduced, that is, 15% (9 out of 58) patients visited the hospital after receiving the EK.

Conclusion: The practice of providing anticipatory medicines helps to reduce emergency room visits by patients during COVID Pandemic and lockdown.


Experience of Volunteer in Palliative Care

Akhila Koparkar

Senior Team Member - MSW Department E-mail: akhila.koparkar@ Mobile: 9403359821

Introduction: In palliative care setting, volunteers provide a range of support from physical assistance to getting involved in diversion activities and building emotional bonds with patients. The aim of this study is to understand the experience of volunteers from the perspective of volunteers themselves, the patients and the staff.

Methods: This study adopted a structured interview method to collect the data using a questionnaire. Data were collected from volunteers (n = 15), patients (n = 10) and staff (n = 5). The study adopted a Framework analysis method to analyse the responses.

Results: There were a range of motivations of volunteers that included wanting to give back to society, use their skills in their retirement and personal experience of caring for patients. All volunteers reported a high level of satisfaction. There were some challenges, however, also reported that included: Negotiating the distinctiveness of the volunteers role from that of paid professionals; attachments to patients knowing that they may be at end of life and thinking about one’s own death and feelings of helplessness to resolve some family situations. Both patients and staff reported the importance of volunteers in providing a greater sense of normalcy to their lives and the need to better support volunteers.

Discussion: Volunteers motivations are important to understand to ensure that they have a fulfilling experience at the centre. It is important to provide emotional support to volunteers and ensure adequate training and de briefing so that it is an enriching experience for both volunteers and patients.


Empathetic Interventions to Help Parents whose Children Are at the End of Life: A Case Study to Address Parental Guilt

Prajakta Dhavale

Palliative Care Consultant Social Worker E-mail: prajakta.p.dhavale@gmail. com. Mobile: 9028876892

Introduction: Guilt is a normal emotional reaction to the loss of a loved one. However, for paediatric patients, guilt often results in complicated grief patterns. Parents think that they could have done things differently following the death of their child. It is important to address this guilt for parents to move on in their grief.

Case Description: *ST was a 10-year-old girl with Rhabdomyosarcoma. She underwent Induction Chemotherapy but had a relapse after a month. The oncologist that started her relapse treatment referred her to our palliative care centre for symptoms management and overall care. As her prognosis was poor, the palliative care social workers helped the parents confront their perception of having a daughter with cancer as well as the child’s fear and anxieties - thought the parents were resistant in having joint conversations. The social worker played a key role in managing grief in the final hours of the child by being there for the mother and providing explanations for the child’s gestures. The case study describes how the social worker continued to support the family for over 6 months.

Discussion: The case story illustrates some key lessons such as the importance of good rapport with parents before the death of their child and training for health-care professionals in providing empathetic interventions such as silence as well as how to have conversations about death to lessen parental guilt. *Family has consented for this case to be shared.


The Role of Palliative Care in Adjusting to a New Way of Life-A Paediatric Oncology Case Study

Anuradha Karegar

Bai Jerbai Wadia Hospital for Children, Mumbai, Maharashtra, India. E-maiil: . Mobile: 9892566156

Introduction: Palliative care principles can be used throughout the disease trajectory, from before diagnosis to treatment completion or towards end- of-life care through bereavement. Each phase has unique decisions to be taken which can be facilitated by the palliative care team. The benefits of early referrals are seen for the child, caregivers and treating professionals. Is it providing symptom relief, facilitating communication for decisionmaking, emotional support and diversion therapy.

Case Description: D an 8-year-old single child of well-educated parents was followed over a period of one-and-a-half year. Her symptoms were pain in the lower extremities, constipation and urinary retention. She was referred for pain management and later diagnosed with Pelvic Primitive Neuroectodermal Tumour.

Discussion: Patient D feared hospital admissions. We engaged her with diversion and play therapy and in subsequent admissions she got comfortable with admissions. Parent’s felt extremely anxious and helpless which reduced considerably as her pain was managed. Their trust and confidence built and they looked for reassurance and shared their fears and insecurities. They disclosed the diagnosis to D enhancing adherence and coping positively with the prolonged treatment. Families interactions with treating staff improved. D cooperated with nurses during process of enema; treating doctor’s during the course of administering chemotherapy; physiotherapist sessions and radiotherapist during RT procedures. They would visit the department without fail even on follow-ups.

Conclusion: Early referrals are effective for adherence to active treatment and even to manage medical emergencies. Haematology- oncology treating team members feel supported in the care of patients and families.


Facilitators and Barriers for Meaningful End of Life Conversations with Paediatric Patients and Families

Joanna Pinto

Senior Counsellor, Bai Jerbai Wadia Hospital, Mumbai, Maharashtra, India E-mail: . Mobile: 7045841673

Background: Accepting and initiating discussions about the possibility of death in children can be a challenging and emotionally exhausting experience for not just the family but also for treatment providers. For the treating physician, it is the realisation that their curative intent is no longer possible. For the parents, the mere consideration of the possible death of their child propels them into a sphere of denial, disbelief, anticipatory grief and often into deep existential crisis. In this backdrop discussing end of life care and talking to children about death and dying can seem self- defeating. Aim: The aim of the study was to identify barriers and facilitators in initiating timely end of life care conversations with paediatric patients and their parents.

Methods: This study analysed the case data of ten children who had been referred to the palliative care unit of the hospital in the past 2 years. Of these, five were cases where the child had been informed about their imminent death and five where this had not been done.

Results: This study has highlighted the importance of the following factors that influence meaningful end of life conversations: relationship and communication between the treating physician and palliative team; age of the child and non-hierarchical nature of the parent-child relationship; religious beliefs; marital relationships between parents and level of family support.

Discussion: Early conversations can lead to better quality end of life care leading to better reflections and awareness about the factors that facilitate better end of life care.


Challenges and Opportunities for quality palliative care- Initial experience from Homi Bhabha Cancer Hospital and Research Centre, Muzaffarpur


Honorary Consultant Homi Bhabha Cancer Hospital and Research Centre, Muzaffarpur, Bihar, India E-mail: .

Mobile: 917903639096

The Indian region of North-Bihar has been plagued with floods, poor infrastructure, dismal connectivity and years of political and social neglect resulting in underdevelopment and backwardness on many Social and Economic indicators. Although home to a staggering 5 core population, there is no tertiary Cancer Centre. The existing two medical colleges hardly have enough manpower or the infrastructure to manage the Emperor of all Maladies. Sadly no dedicated Palliative Care/Hospice centre exists in this region. The Department of Atomic energy, under the Aegis of the Tata Memorial Centre, envisioned the need to develop a 100 bedded cancer hospital in 2018. With help of the Government of Bihar finally in late January 2021 the first patient was registered in the hospital. Within a period of 1 month from January 28, 2021 to February 28, 2021, 165 new patients were registered and 52 patients previously registered in other TMC units were treated. The majority 64/165 (38.78%) patients were deemed palliative, due to either advanced disease presentation or refractory to multi modalities of prior treatment. Multiple novel, effective methods for delivering quality palliative care were undertaken. The demographics, the referral pattern, the time from diagnosis to treatment, socio-economic status, cost to treatment and gap assessments were done. Greenfield Cancer Hospitals, should work with larger centres and develop a hub-spoke model in which treatment of early as well as very advanced cancers can be effectively managed with limited resources and capacity building of existing manpower and infrastructure be initiated.


Community Palliative Care Education in a Pandemic

Joanne Hayes

Cardiff University, Cardiff, Wales E-mail: . Mobile: 7917275884

Background and Aims: The COVID-19 pandemic has highlighted the need for rapid and cost effective education on palliative care issues as the usual access to outpatient clinics and hospital care has been limited.

Methods: Members of the Cardiff University MSc Programme in Palliative Medicine rapidly developed and delivered a series of five free 1 h webinars on advance care planning, end of life care, access to medicines, support to patients in care homes and bereavement. The webinars were aimed at staff in community settings managing patients dying from COVID, cancer, heart failure, COPD and dementia. The sessions were made interactive by encouraging questions through the Q and A facility, comments through the chat function and polls to gauge opinions on the issues raised. The webinars were provided at no cost to attendees as part of Cardiff University’s Civic Mission’ during the pandemic and delivered over the ZOOM digital platform.

Results: A total of 916 registrations were received. The webinars were recorded and hosted on a Cardiff University YouTube channel, available to view at any time for anyone registered. Electronic feedback was collected through Likert scales for content, delivery, presenter knowledge and timing. More than 90% of respondents gave scores of very good, or excellent.’ Free text comments were included Figure 1.

Discussion and Conclusion: In times of crisis, good quality and interactive education can be produced and delivered at pace via virtual platforms and at minimal cost.


Pattern of Palliative Care Referrals in a Tertiary Care Paediatric Hospital

Veronique Dinand

Bai Jerbai Wadia Hospital for Children, Mumbai, Maharashtra, India E-mail: . Mobile: 9971839244

Background and Aims: Paediatric palliative care is a growing specialty in India. Very few paediatric hospitals have palliative care services. There is no India data about the distribution of palliative care needs in children. The aim of the study was to describe the patterns of palliative referrals in a purely paediatric super specialty hospital, with a recently established Palliative and Supportive Care Unit (PSCU).

Methods: A retrospective study was undertaken of all children referred to palliative care services since its inception in May 2019 till Nov 2020. Sources of information were palliative care register, medical records, counselling notes, follow-up phone call notes and home visits. Data collated included demographics, diagnosis, referring department, reason for referral, symptoms, counselling and outcome.

Results: 442 children (M-62% and F-38%) aged 2 days-17 years were referred. Most common underlying conditions were oncological-32%, congenital malformations-12%, genetic diseases-10%, neurological conditions-10%, severe infections-9%, kidney disease-7% and neonatal conditions other than congenital malformations-5%. PSCU referrals were given from medical and surgical wards-45%, paediatric ICU-26%, neonatal ICU-9% and paediatric specialty OPDs-10%. Referral was mainly for emotional support and family counselling, supportive care and symptom management, participation in end-of-life-care decisions and shared decision making. 194 (44%) children died, including end-of-life-care at home (n = 66) or in the hospital (n = 15). About 11% have recovered, 18% are at home with chronic life-limiting condition and regular visits/admissions to hospital.

Conclusion: The patterns of paediatric palliative care referral in a paediatric super specialty hospital, which we describe, may not reflect the extent of palliative care needs seen in Indian children, particularly in the community.


The Interconnected and Interdependent Multi-level Role of Government in Disseminating Palliative Care: Lessons from the PC-Paice Implementation in India

Archana Ganesh

Indian Association of Palliative Care, Jharkhand, India E-mail: . Mobile: 9886743319

Background and Aims: Despite the call from the global public health community and the Lancet Commission’s report to ensure access to pain management at the end of life, there has been limited success in the implementation of national palliative care (PC) programs in the developing world. We capitalised on the evaluation of the India-wide PC - Promoting Assessment and Improvement of the Cancer Experience (PC-PAICE) Program, to examine the role of government in disseminating PC throughout India.

Methods: Leveraging quota sampling, we conducted semi-structured interviews to capture the perspectives of 44 stakeholders (organisational leaders, clinic leaders and clinical team members) from seven geographically- diverse Indian PC settings. Emergent themes were identified using content analysis methodology.

Results: Theme 1: The Government of India, both at the central and state level, is taking steps to prioritise PC through national policies, programs and other decisions. Theme 2: India’s multi staged decision-making process allows for vulnerabilities in the successful dissemination of PC. Theme 3: Relative prioritisation of PC and competing budgetary demands by central and state government officials impedes PC dissemination. Theme 4: Acceptance and championship of PC by both central and state government officials facilitates the dissemination of PC.

Discussion and Conclusion: This analysis offers an insight into the complexities associated with the interdependency and interconnectedness of the multiple levels (centre and state) of national governance which affects national program implementation. Increased efforts should be directed towards better coordination between these layers of governance, to achieve more effective implementation and dissemination of PC throughout the country.


Project ECHOa„4 Palliative Care: Impact of Telementoring and Teaching for Healthcare Providers Working with Rohingya Refugees in Bangladesh

Hunter Groninger

MedStar Washington Hospital Centre, Washington, United States E-mail: . Mobile: 12028777445

Background and Aims: The humanitarian health response is often focused on efforts to save lives, while needs of individuals with incurable conditions are often neglected. Palliative care training for humanitarian healthcare providers (HCPs) has not been incorporated into humanitarian responses. Project ECHO is an established distance-education model that seeks to develop a virtual community of practice to build capacity among HCPs and has been successfully used to support HCPs providing palliative care in South Asia. Here, we aimed to develop, implement and assess the impact of a Project ECHO for Humanitarian Palliative Care in the Rohingya Refugee Crisis in Bangladesh.

Methods: Electronic surveys were distributed at baseline and after 6 months.

Results: The program consisted of 7 ECHO sessions (75-min) conducted from September-October 2020. There were 75 participants. Survey respondents included nurses (45%), physicians (45%) and other HCPs (10%). The majority (60%) worked at community-level or primary care clinics (very few more specialised facilities in the region) and 60% were responsible for caring for 10 patients requiring palliative care per month. Comfort and attitude scores showed improvements after participation, with stronger improvements noted in self-efficacy identifying people who might benefit from palliative care, discussing the role of palliative care, breaking bad news to families and in treating pain.

Discussion and Conclusion: Project ECHO suggests a novel educational model that can be used to support primary HCPs in humanitarian settings. We continue to see the impact of the program as HCPs have continued to participate in on-going tele-mentoring sessions.


Wound Management in Palliative Care: Green Pastures Hospital Experience

Suraj Maharjan

Green Pastures Hospital, International Nepal Fellowship, Pokhara, Nepal E-mail: . Mobile: 9779851214675

Introduction: Palliative care facility is a new addition to Green Pastures Hospital. It has broadened the work area of the hospital in the field of disability. We see many different kinds of palliative patients such as terminal ill cancer patients, tetraplegic spinal cord injury patients, motor neuron diseases and severe burn patients. Most of these cases present with complicated wound along with their existing disease. We share our experience in management of wound in Green Pastures Hospital.

Case Description: We present a case series of palliative patients who presented to us with complicated wounds. These patients include terminal cancer patients, tetraplegic patients with spinal cord injuries, motor neuron disease, vertebral TB and severe burns. All of these patients presented with complicated wounds primary or secondarily related to their disease. In all of these patients, wound management was done with proper dressing and debridement along with management of their chronic pain and other presenting disease symptoms. Furthermore, wound care education and dressing training were given to a caregiver.

Discussion: Wound management is quite a challenging task balancing with an availability of proper dressings, their life expectancy and goal of wound care. We share our hospital experience with various cases in wound management in palliative patients presenting with complicated wounds. In all of these cases our ultimate focus was to improve their quality of life.

Keywords: Palliative care, wound management, disability, quality of life


Project Hamrahi: A Ten-year Evaluation

Odette Spruijt

Australasian Palliative Link International, Western Health Network, Melbourne, Australia E-mail: . Mobile: 61407129699

Project Hamrahi (PH) is an international mentorship project between Australasian Palliative Link International (APLI) and Pallium India, established in 2010. It aims to support palliative care development in India through long-term relationships between Australasian (mentors) and Indian (mentees) clinicians. An evaluation of the first 10 years of this project was conducted with the aim of assessing the outcomes and learning’s to date, to guide and shape the future of the project. Key objectives were to understand the benefits and challenges of the project for mentees, mentors and the supporting project officers (POs) of Pallium India; explore the impact on the sustainability of palliative care activities at partner sites in India and identify key learning’s for mentors and mentees. We conducted a mixed-methods study with on-line surveys of mentors, mentees and POs followed by semi-structured interviews with mentees, who were purposively sampled to reflect the diversity of sites, health disciplines and years of experience with PH. Eighty-three clinicians were surveyed (28 mentors, 49 mentees, 6 POs) and 57 responses received; several respondents completed multiple surveys (if linked to several sites) and response rates were 61% (mentors) and 45% (mentees) and 100% POs). Key benefits were the shared learning, advocacy, relationship-building and the PO’s role in facilitating cross-cultural understanding. Improvements in visit preplanning, between-visit follow-up and need for more intensive engagement were identified. PH was instrumental in building confidence, skills and knowledge at mentee sites and fostered positive relational links for participants, despite the operational constraints.


Role of Empathy in Terminally Ill Paediatric Patients A Nurse’s Perspective

N. Sangeetha

Nursing Tutor E-mail: . Mobile: 9538906836

Introduction: Empathy is at the centre of nursing care. Empathic care is an essential part of their service to attain cooperation and trust from the patient. However, it would be different while dealing with children without parents. It is well understood that the best nursing care to the child can be provided only in the presence of the parents. However, the same empathic care can become a challenge for nurses while the parents are not present because demonstrating empathy with them can be different from dealing with adults.

Case Description: Master V, 6 years, male diagnosed with the recurrent medulloblastoma brought by mother with persistent vomiting, facial puffiness, fever and headache. Child is very much attached with his mom all the time and very uncooperative. She was 5 months pregnant and very anxious. Master S, 11 years, male diagnosed with Rhabdomyosarcoma left chest wall admitted with the complaints of fever, very bad wound with mal odour, bleeding and pus from the chest wall. Wound dressing was a challenge for the nurses.

Discussion: In the above two cases, both kids were very uncooperative due to their illness trajectory. Both the patients were left with the nurses without their parents for few days. Empathic care, forming a bond, having a dedicated nurse focusing on relationship building, playing with the child, etc., go a long way in dealing with paediatric patients. Nurses empathetic care reduces the children anxiety and created an emotional bond between them and changed their dynamic.

Keywords: Empathy, nursing, paediatric palliative care


Successful Home Based Management of A 95-year- old Lady with Acute on Chronic Heart Failure During COVID Times

Skaria Baby

Department of Anaesthesiology, Malankara Orthodox Syrian Church Medical College, Kolenchery, Kerala, India E-mail: skariaskariababy@gmail. com. Mobile: 919646918869

Introduction: Organ failure is common in the elderly population. As the life expectancy keeps increasing, the population living with organ failures is also bound to rise. Heart failure ranks among the most common causes of hospitalisation among the elderly. Effective home based management of heart failure facilitate better resource utilisation and enhance patient comfort.

Case Description: We present the case of home based management of acute on chronic LV failure with fluid overload and hyponatremia in a 95-year-old lady who used to walk with support and was able to take care of herself. She was a known case of chronic heart failure and atrial fibrillation and used to be on medications for the same. Her family wanted a home consultation and on discussing the treatment options they decided for home based treatment. Relevant consultations were taken over the phone and a final plan was made. With IV antibiotics, diuretics, Na+/K+ supplementations and NG feeds her clinical condition improved. With good biopsychosocial approach she showed continuous improvement and was back to her pre illness condition within 2 weeks.

Discussion: The recent COVID-19 pandemic showed us the value of ICU beds. A home-based management of chronically ill elderly patients can ensure ICU bed availability for the more deserving while enhancing patient comfort and reducing risk of nosocomial infections. The cost of home management of illness in this case was found to be less than a third of average cost of hospital admission in heart failure.


Capacity Building for Palliative Care IN Bhutan: Developing a National Training Manual

Yangden, Clinical Nurse

Palliative Care Unit, Jigme Dorji Wangchuck National Referral Hospital, Thimphu, Bhutan E-mail:

Mobile: 97517411564

Background and Aims: At the behest of WHO SEARO national stake holders in Bhutan joined the WHO Collaborating Centre to initiate a strategy for capacity building in palliative care. The first stage was to develop a national training manual. We present the approach used and the results of this venture.

Methods: A preliminary meeting of key stakeholders and external technical experts tasked a core group to develop the national training manual. Technological solutions were used to work together during the pandemic. The external technical experts provided an initial draft for each module. This was iterated collaboratively with Bhutanese team through weekly 90 min Zoom meetings over 14 weeks.

Results: The developmental philosophy of Gross National Happiness (GNH) was the foundational Bhutanese identity for the manual. The manual had general content (all health professionals) and specific content (doctors/ nurses/HA) for 5 days training.

Discussion and Conclusion: This approach demonstrated how a national manual for training can be developed for palliative care by collaboration with international technical expertise. The key learning points are: External experts being respectful of Bhutanese norms. Basing the manual on existing ground realities. Collegial atmosphere allowing openness as well as challenge of external technical expertise key challenges were Technology snags Longer time taken with virtual platform Field testing of the manual with national participants and international volunteers and applying the manual for structured training is the next step for capacity building.


Role of Active Listening, Empathy and Touch in an Onco-palliative Hospice Patient: A Physiotherapist’s Perspective

Mathew Jinu Saji

Bangalore Hospice Trust-Karunashraya, Bengaluru, Karnataka, India E-mail: . Mobile: 9972492301

Background: Pain can become a deterrent in carrying out activities of daily living, leaving patients with life-limiting illnesses feeling a sense of burden. Functional rehabilitation is at the core of palliative care physiotherapy and enhances quality of life. The first step is often rapport-building, assessment, problem list and patient-centric intervention plan. Active listening, empathy and touch prove to be an effective tool for a physiotherapist.

Case Description: A single case study design was employed; A 51-year-old gentleman with Metastatic Acoustic Schwannoma and co-morbid Systemic Hypertension and Hydrocephalus was admitted under our care and was referred for Physiotherapy interventions by the concerned Doctor. On Eastern Cooperative Oncology Group (ECOG), he scored 4 indicating bedridden status, with a pain score of 8/10 on Visual Analogue Scale (VAS). He was very sensitive to minimal interventions such as changing clothes and diapers. Initial interactions revealed that he was disengaged, distressed with the pain, loss of functional independence and loneliness.

Discussion: The scope of physiotherapy in life-limiting illnesses is at its nascent stage. Humanistic approaches advocate seeing the patient as a person; combining active listening, empathy and touch in engaging the disengaged patient. The initial intervention involved passive movements followed by sitting with back rest by the bed side, exercises for arm and forearm, sitting with back rest for longer periods of time and sipping a glass of water independently. These micro-gains go a long way in improving quality of life, making empathy- cantered interventions more effective than protocol-bound approaches. Key Words: Physiotherapy; Active listening, Touch, Functional activities, Author Information: M J Saji 1, K Reddy 2, R Joy 2, S Simha 31 Mathew Jinu Saji, Physiotherapist, Dept. of Physiotherapy, Karunashraya Bangalore Hospice Trust. 2 Dr. Kavitha Reddy, Medical Officer, Karunashraya Bangalore Hospice Trust. 2 Dr. Reena Joy, Medical Officer, Karunashraya Bangalore Hospice Trust.3 Dr. Srinagesh Simha, Medical Director, Karunashraya Bangalore Hospice Trust.Institute: Karunashraya, Bangalore Hospice Trust, Varthur Main Road, Kundalahalli Gate, Bangalore- 560037 Presenting author: Mathew Jinu SajiEmail: Mobile: +91-9972492301Date: 04th March 2021Preferred presentation type: Oral.


Blood is Thicker than Water: How Cancer Can Trigger Guilt, Shame and Empathy in Caregivers

J. Alafia

Senior Research Fellow and Training Co-ordinator E-mail: alafia.jeelani@ Mobile: 8884206831

Introduction: Families grappling with a cancer diagnosis and impending death can bring to the fore, feelings of guilt, shame and empathy in caregivers. These reactions are not just limited to the diagnosis, but toward other family members, role-shifts, formation of new alliances, uncovering long-standing issues and change in interaction patterns. Therefore, the aim of this paper is to present a therapist’s reflections on how family dynamics take a turn and evoke different emotional reactions in caregivers leading to both negative and positive outcomes.

Case Description: A single-case observational design was used; therapist case notes, personal journal and supervision notes are used to present data. The index patient was a caregiver (youngest daughter) to her father, a 74-year-old gentleman with lung cancer and brain metastasis. He had a history of nicotine dependence and IPR issues with wife. The family also included an older sibling and the mother, both involved in different aspects of caregiving. The siblings were receiving conjoint sessions over a period of 6 months to deal with individual and family issues.

Discussion: Empathy between family members caring for a dying patient has a positive effect on both family and the patient. Being aware of caregiver reactions, a thorough family assessment, facilitating healthy communication between members, negotiation and purposeful self-care are implicated in the psychological management of families. This case highlights how fostering empathy for the dying patient and other family members, reducing feelings of guilt and shame go a long way in facilitating psychological adaptation.


Palliative Care Management of A 17-year-old Girl Having Malignant Peripheral Nerve Sheath Tumour

J. Daniel Raj

Jeevodaya Hospice for Cancer Patients, Chennai, Tamil Nadu, India E-mail: . Mobile: 9566997109

Introduction: A 17-year-old female patient who was diagnosed with Malignant Peripheral Nerve Sheath Tumour was referred to our Hospice for Palliative care management. The major complaints when she got admitted were intolerable pain and sleeplessness for more than a month.

Case Description: Patient along with Malignant Peripheral Nerve Seath Tumour has Neurofibromatosis type 1 and Kyphoscoliosis. There is a dumbbell shaped extradural mass lesion noted at T12/L1, L1/2 level widening the left neural foramina and displacing the cord to the right side causing severe compression. There are multiple small mass in other locations also. Multiple discrete lesions in the retroperitoneum around the aorta at the level of L1-L3. Both the lower limbs got paralysed so the patient became bedridden. Patient’s prognosis was not revealed to her when she was brought for admission. Her main complaints when she was brought for admission were severe unsettling pain and sleeplessness for more than a month.

Discussion: Pain management - Ways to make her get better sleep - Management of pressure sores - Nursing care - Counselling for her psychological problems - Counselling for family - Ways to mobilise her with less discomfort.


Palliative care by Nurses, Opioids Availability, was Medicines Availability Improved? Community Members Involved in Fundraising for Meeting Shortage of Medicine, No of Training Done for Community, No of Active Volunteers, Any Information on Funds Raised

Maibam Ranita Devi

Health and Wellness Centre, Awang Wabagai Imphal, Manipur, India E-mail: . Mobile: 7005611507

Integrating palliative care in primary health care: The Awang Wabagai Health and Wellness Centre.

Background and Aims: Palliative care in Manipur started in November 2017 and at the Health and Wellness Centre (HWC) Awang Wabagai a year later. Health and Wellness Centres were created to deliver an expanded range of services than previously delivered through the primary health care system. Palliative care was included as part of such services. This presentation looks at implementation of palliative care through HWC.

Methods: The policy driver was the national health policy in 2018 (Ayushman Bharat) implemented by the Manipur State government, 170 HWC is operationalise, twp nurses were trained in Palliative Care and started engaging the community through awareness followed by a participatory approach. Carers, youth and women’s groups were targeted for training. Service delivery was through home care. Medicines availability: Opioids were not available at HWC. Other medicines and materials are usually available but when there is shortage, community members mobilise for purchase of medicines.

Results: CHO(1), ANM(1), ASHA(5) and Anganwadi workers(3) and 3 elderly volunteers have been trained. Figure 1 shows coverage of patients through home care. In 2018, home care was provided only for cancer patients. Since then care expanded to include chronic illness and disability.

Discussion and Conclusion: The key components that allowed integration of palliative care were policy commitment capacity building by training strong community engagement and focus on equity and free universal access continuing improvement of range and quality of services provided the on-going challenges faced are: monitoring and improving quality of care Reliable availability of medicines disruption in transport, electricity.


Comparison of Ropivacaine Along with Dexmedetomidine and Ketamine in Modified PECS Block Following Breast Conservation Surgery or Modified Radical Mastectomy RCT, Double Blinded Trial

Dharani Lenin

Post Graduate Student E-mail: .

Mobile: 9677235808

Background: A modified PECS block is a promising analgesic technique for pain control in the patients undergoing breast surgeries. As we know breast surgeries is associated with notable post-operative pain. Combining the pectoralis block with general anaesthesia achieves superior outcomes.

Aims: The aim of the study was to assess the effectiveness of ropivacaine along with adjuvants in view of bringing down the post-operative analgesia and improving the numerical rating scale.

Methods: An interventional clinical trial was performed in females of age 1865 years underwent Breast surgeries in AIIMS Patna. Three Groups considered in this study as follows: Group A Group B and Group C. Data collection was done on the data captured sheet in which information on demographic details, interpretive details, post-operative details, patient satisfaction score and pain assessment tool (NRS) were used. Statistical analysis was done in IBM SPSS 22.0. Where mean and SD, Chi-square, paired t-test, repeated ANOVA test was applied.

Results: As it is an on-going clinical trial, and the results of an interim analysis of18 patients were done. Mean age was 46 (10.69), pre incision HR: 72 (15.96), post-incision HR was found to be less in drug C (76[11.2]) and was highest in Drug A (86.3[7.6]), post-incision BP was less in group C (111/63 [16.2/5]) than other groups Detailed analysis will be presented at final presentation.

Conclusion: This study helped in exploring efficacy of different drugs used in modified PECS block and it was found in interim analysis that Group C has a better outcome in alleviating pain.


Social Dimension of Palliative Care: A Qualitative Exploratory Study

Abhijith Jose

Surveillance Medical Officer, World Health Organisation-India E-mail: . Mobile: 8086888747

This article, which is part of a primary master’s level research work with a qualitative exploratory evaluation research design, seeks to understand the social determinants of palliative care. Primary data were collected from (i) care recipients, (ii) care-givers, (iii) service providers (both Government and Non- Government), (iv) experts and (v) FGD; using a semi-structured interview schedule. The respondents were selected on the basis of purposive sampling technique. The data analysis framework of National Palliative Care Program, Department of Health and Ageing, Commonwealth of Australia 2014’ was used as guidance for evaluation. The study area is a district in Kerala State with particular focus on a Village Panchayat. The social dimension of palliative care even though embedded in its definition, is usually given a secondary importance after physical and mental care, whether in research or implementation. From caregivers and care-recipient’s perspective, economic benefits and social support were the major determining factors for subscribing to Community Based palliative care services. The study also recognises solidarity as a means of improving accessibility, sustaining such services; and the enabling environment state policies can provide. Clearly, community palliative care services have its relevance in the current context of demographic transition as well as reduction of OOPE. The Article recommends focus on social aspects of palliative care while designing or implementing palliative care services in any State or area for increased appeal.


Use of Tranexamic Acid Infusion in Advanced Cancer Patients with Moderate to Severe Bleeding: A Case Series of 12 Patients

Chaitanya Patil

Kolhapur Cancer Centre, Gokul Shirgaon, Maharashtra, India E-mail: . Mobile: 9764167788

Introduction: Bleeding in advanced cancer patients is a bothersome experience for the patient and their caregivers. Occasionally catastrophic bleeding occurs. Lack of evidence in the management of bleeding in advanced cancer patients warrants this research.

Case Description: We present a case series of 12 patients who underwent a regime of tranexamic acid (TXA) infusion in Kolhapur cancer centre. After goals of care discussion and advanced care planning documented, we gave a loading dose (6000 mg in 100 ml Normal saline) for up to 3 days till the haemostasis was achieved. Later we gave a maintenance dose of 1.5 g 4 times a day for 7 days and later it was tapered in 5 days. Other supportive measures were provided to all the patients. Patients with WHO grade 2 and 3 bleeding were included in the study. Patients with a history of allergy to TXA, were on anticoagulants, having heart disease, stroke and those who had impaired renal clearance were not included in the study.

Results and Conclusion: Among 12 cases haemoptysis (4/12) was the most common presentation. Of the 12 cases, three cases presented with crisis admission. One case had a history of sudden onset of shortness of breath and chest pain and two cases had crisis bleeding. With this regime, there was complete arrest of bleeding and lesser crisis admissions in our patients. Further large and multi-centric studies have to be conducted in this regard to boost up the level of evidence in the management of bleeding in palliative care patients.


COVID19 Lockdown Model of Palliative Home Care: An Innovative Approach

Gayatri Gogoi

Pratishruti Cancer and Palliative Trust, Dibrugarh E-mail: gayatrigogoi303@ Mobile: 9435030084

Introduction: The unprecedented situation like COVID-19 Global pandemic interfered with all medical services including palliative care services. Lockdown created a need of home based palliative care because patients stopped visiting the hospitals to receive usual care due to multiple reasons. We developed an innovative approach to provide care of patients who were previously registered and those newly registered in our cancer support and Palliative help lines.

Methods and Mechanism: Patients those were already receiving services continued with telemedicine, audio-video calls and supply of essentials. Newly registered cases were evaluated in nearest hospitals keeping safe COVID protocols in place. They were provided with ambulance for all transportations. The end of life care services were provided by direct home visits mostly by doctors and nurses and other paramedics trained in COVID protocol and wearing PPE kits.

Period: March 16 to August 31, 2020.

Results: A total number of 316 cases were cared by these three individualised mechanism, out of which 46 cases received end of life care with Home visits, 180 cases received telemedicine/Telecounseling and rest of 90 cases received hospital based care with ambulance and financial support.

Conclusion: Pratishruti Cancer and Palliative Trust, Dibrugarh, innovated a model suitable to COVID-19 Global pandemic health situation and lockdown to provide Palliative Care, coordinating with Administration and panel Hospitals. We provided the help to patients when they needed the most overcoming great difficulties.


Health-related Quality of Life and its Socioeconomic and Cultural Predictors Among Advanced Cancer Patients: Evidence from the APPROACH Cross-sectional Survey in Hyderabad-India

Dr. D. Priya Kumari

E-mail: . Mobile: 9866916065

Background: Patients with advanced cancer often experience poor health- related quality-of-life (HRQoL) due to cancer and treatment-related side- effects. With India’s palliative care landscape in its infancy, there is a concern that advanced cancer patients, especially individuals who are from disadvantaged populations experience poor HRQoL outcomes. We aim to assess HRQoL of advanced cancer patients in terms of general well-being (physical, functional, emotional and social/family well-being), pain experiences, psychological state and spiritual well-being and determine the relationship between belonging to a disadvantaged group and HRQoL outcomes.

Methods: We administered cross-sectional survey to 210 advanced cancer patients in a regional cancer centre in India. The questionnaire included standardised instruments for general well-being (FACT-G), pain experiences (BPI), psychological state (HADS), spiritual well-being (FACT-SP); socioeconomic and demographic characteristics.

Results: Participants reported significantly lower general well-being and spiritual well-being compared to a reference population of cancer patients in the U.S. Patients reported mild to moderate pain severity, normal anxiety, lower physical well-being and borderline depressive symptoms.

Conclusion: Advanced cancer patients, especially those with lower financial well-being and belonging to minority religions, reported low physical, functional, emotional, social/family and spiritual well-being and borderline depressive symptoms.

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