Dr. Siwan Seaman, Clare Elwell, Prof Jenny Kitzinger

Cardiff University, Wales, United Kingdom. Email: npease@doctors.org.uk

ABSTRACT

Objectives: Modern medicine has led to an increasing number of people surviving in long-term Prolonged Disorders of Consciousness (PDoC) (vegetative or minimally conscious states). In some cases, clinicians are then withdrawing clinically assisted nutrition and hydration (CANH) (considering information about diagnosis, prognosis, patient preferences, and their legal context). Staff providing care in this situation may need special support/training.

Materials and Methods: This research involved the delivery of a 3-h, international, multi-media, online course informed by United Kingdom-based research and legal/professional guidelines. Free places were provided through Marie Curie’s ‘Research to Impact’ funding. Evaluation through questionnaires and focus groups explored the impact on learners.

Results: Eighty-four people completed the course, and 95% reported positive improvements in all the following elements: (a) Understanding/knowledge about the appearance of PDoC patients; (b) when to discuss palliative care; (c) clinical treatment following CANH withdrawal; (d) people’s concerns about withdrawal and (e) staff, family and patients’ diverse values/beliefs and how to offer support. Learners also reported the impact on teamwork, communication, and care for patients and highlighted that thinking through the palliative care issues helped healthcare professionals engage with best interests’ decision-making about life sustaining treatment. One unanticipated outcome was that some families of PDoC patients did the course and used it to reflect on the treatment for their relatives and/or advocate with clinical teams.

Conclusion: This intervention demonstrates the need for, and potential effectiveness of, online staff training around care for this relatively unusual patient group. It also highlights how such a course informs reflection about life sustaining decisions for both staff and family groups.

Keywords: Prolonged disorder of consciousness, PDoC, vegetative, e-learning, withdrawal, palliative care

Komal Kashyap

Department of Onco-Anaesthesia and Palliative Medicine, Dr. B.R.A. Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, India

Email: gielenj@duq.edu

ABSTRACT

Objectives: Euthanasia is an important yet controversial issue in palliative care. Most previous research on euthanasia attitudes in India has relied on small convenience samples and has not assessed changes in attitudes. This study aimed to analyse the attitudes of large samples of the general public over time.

Materials and Methods: Data were extracted from the World Values Surveys in India from 1990 through 2023. The questionnaire that was used each time requested participants to indicate on a 1–10 scale to what extent they considered euthanasia ‘justifiable’. The questionnaire included demographic questions.

Results: Data were collected in 1990 (n = 2500), 1996 (n = 2040), 2001 (n = 2002), 2006 (n = 2001) and 2023 (n = 1692). The mean justifiability of euthanasia decreased from 1990 (3.28, 95% confidence interval [CI] [3.15, 3.4]) to 2023 (2.88 CI [2.75, 3.01]), although the decrease was not linear with higher means in 2001 (3.4, 95% CI [3.24, 3.56]) and 2006 (3.88, 95% CI [3.72, 4.04]). In 1990, 52.2% considered euthanasia never justified, while 55.5% thought so in 2022. In 2022, euthanasia attitudes were not significantly associated with age, gender, marital status, and educational level. However, the association with religious affiliation was significant (P < 0.001) with Sikhs having the lowest mean score among identified religious groups. Persons who considered God more important in life were less likely to find euthanasia justifiable (P < 0.001).

Conclusion: The data reveal a slight decrease in people’s approval of euthanasia over the past 33 years. Religion, particularly faith in God, still is a major influence on attitudes to euthanasia in India.

Keywords: Euthanasia, Attitudes, India, World Values Survey

Deepak Kumar Garg

JLN Medical College, Ajmer, Rajasthan, India Email: shaheereabdulla@gmail.com

ABSTRACT

Objectives: Narrative medicine utilises storytelling to enhance patient-centred care, improve empathy and strengthen communication, making it especially beneficial in palliative care. By focusing on individual experiences, this approach helps to deepen the provider-patient relationship and fosters self-reflection among healthcare providers.

Materials and Methods: In palliative care settings, narrative medicine addresses the emotional, spiritual, and physical dimensions of suffering. It emphasises quality of life and meaning-making, supporting difficult conversations and facilitating shared decision-making. Key practices include patient storytelling, provider reflection groups, storytelling therapy, and narrative-based patient education.

Results: Studies show that narrative medicine improves holistic care by allowing patients to share their personal stories (Quah et al., 2023). It enhances communication between patients and providers (Rudnik et al., 2021) and shapes meaningful experiences for both parties (Kitta et al., 2023). These practices help reduce provider burnout and promote resilience.

Conclusion: Despite challenges such as time constraints and resource limitations, integrating narrative medicine into palliative care is feasible with proper training, community partnerships, and routine incorporation. Overall, narrative medicine serves as a vital tool in palliative care, enhancing empathy, communication, and patient-centred care.

Keywords: Narrative Medicine, Quality of Life, Burnout reduction, Communication, Reflective Writing, Storytelling, Narrative Interviews

J. Hayes, A. Clogson, F. Rawlinson, N. Pease

Cardiff University, Wales, United Kingdom. Email: Jo.Hayes@mariecurie.org.uk

ABSTRACT

Objectives: 56.8 million people worldwide need palliative care but only about 14% currently receive it. Since 2006, the United Kingdom (UK) government’s Commonwealth Scholarship Commission (CSC) has funded 120 selected students from India and neighbouring countries to enrol in the Cardiff University Master of Science in Palliative Medicine for Healthcare Professionals, an internationally renowned qualification.

Materials and Methods: In May 2024, approximately 50 past students from an India alumni WhatsApp group were sent a simple online survey on the impact (from 0 to 10) of their studies on their clinical, management, teaching, and research roles. Free text comments were also requested and four semi-structured interviews were carried out.

Results: Thirty-nine responses to the survey were received (response rate 78%) of whom 32 were from CSC funded students. Eighty-three (88%) of the 94 CSC students who have completed their studies exited with an award and 76 (81%) with at least a Postgraduate Diploma. The average impact ratings from the CSC alumni were as follows: 9.19/10 on their clinical roles, 8.90/10 on teaching roles, 8.58/10 on roles as managers/developers of services, and 8.26/10 on roles as researchers. Two hundred and five articles have been published and 175 presentations given at national or international conferences. All three central council members of the Indian Association of Palliative Care are Cardiff University alumni and many students have become pioneers and strategic leaders of palliative care in India.

Conclusion: We hope for future scholarships from the new UK government and will also explore other funding sources to continue this important international development work.

Keywords: Education, Multi professional, Palliative care, Postgraduate

Jagdish, Dr. Manoj Kamal, Dr. Srikanth, Dr. Bharat Paliwal, Jyotirmay Dhenwal, Meenu Yadav, Dr. Rashi, Dr. Jyoti

All India Institution of Medical Science, Jodhpur Rajasthan, India. Email: jagdishprajapat80@gmail.com

ABSTRACT

Objectives: Palliative care is important for helping patients with serious illnesses live better. In Rajasthan, 180,000 cancer patients need this care, and about 3,375 of them are in Jodhpur. Although home-based palliative care started in Jodhpur in September 2022 and enrolled 283 patients by April 2024, there is still a large gap of 92% in reaching everyone who needs help. Problems like low awareness and limited access make it hard for rural areas like Jodhpur to get proper care.

Materials and Methods: This study looked at how a set of planned actions from May 2024 to October 2024 improved palliative care. These actions included 255 teleconsultations each month, giving out 2,000 pamphlets to teach people, training 234 Accredited Social Health Activists and Auxiliary Nurse Midwives workers in all health centres of Jodhpur and sharing palliative care books with caregivers. Sixteen volunteers also joined to help in the community. Data were collected and studied to see changes in how many patients used the services, how engaged volunteers were and how often caregiver resources were used.

Results: Before the new actions, 283 patients were registered (about 14/month). After the actions, 144 new patients were registered in 6 months, increasing the average to 23/month. Of all the teleconsultations, 69 were specifically for new patients with location challenges. Community activities grew stronger with the training and pamphlets, which led to more volunteer involvement and patient referrals.

Conclusion: This study shows that a planned approach with teleconsultation, education and volunteer help can improve palliative care access in rural areas. It highlights that community-based strategies can make care more available and helpful in places that need it most.

Keywords: Palliative care,home Care, community involvement.

Veronique Dinand, Anuradha Karegar, Lakshmi Abhishek, Joanna Pinto, Rekha Solomon, Lakshmi Shobhavat, Savio Ponnachan, Ashish Telgote, Sheetal Gaikward, Jovita Mary, Shweta Mandavkar

Bai Jerbai Wadia Hospital for Children, Mumbai, Maharashtra, India Email: mayurghoghari107@gmail.com

ABSTRACT

Introduction: Most parents of brainstem-dead children face the sudden devastating loss of the child’s cognition and function. Strong emotional reactions and difficulties in comprehending the irreversible nature of the condition challenge intensivists. The intervention of patient and family-centred palliative care can support intensivists in counselling families within a complex environment. Conversations about goal setting enhance parents’ autonomy, along with emotional support to allow their decision-making at such difficult times.

Aim: This study aimed to analyse parental reactions and decision-making following palliative care (PC) interventions in brainstem-dead children in the paediatric intensive care unit (PICU).

Methods: A retrospective study was conducted on all children who were brainstem dead in the PICU and were referred to the PC unit (2020–2024). All families were counselled by our multidisciplinary team with appropriate psychological intervention.

Results: Twenty-four children with brainstem death were referred to the PC unit. The recorded conversations from all parents were extracted and six themes were identified by narrative synthesis in the decision-making process (1) the emotional reaction of parents, (2) timeframe affecting parental experience in decision-making, (3) transferring decision responsibilities to the intensivists, (4) sources of support to alleviate parental reactions, (5) wide range of decisions made: Organ donation, do not escalate/do not attempt resuscitation and memory-making, de-escalation of inotropes, discharge against medical advice and continue intensive care and (6) bereavement support.

Conclusion: Families of brainstem-dead children need a lot of emotional support and guidance in decision-making to avoid prolonging futile intensive treatment. The presence of a PC team/counsellors in the intensive care unit will help intensivists face distressing scenarios and manage family distress.

Keywords: Brain dead, decision-making, Pediatric Palliative care

Dr. Anbin, Dr. Ishita

Can support, Delhi, India Email: kajal.maggo1@gmail.com

ABSTRACT

Objectives: Malignant spinal cord compression typically occurs when vertebral body metastasis invades the epidural space, compressing the spinal cord. Physiotherapy, including strengthening and mobilisation exercises, is beneficial in managing this condition. This case report demonstrates the role of physiotherapy in helping patients with paraparesis from spinal cord compression achieve functional independence and maintain quality of life.

Materials and Methods: A 62-year-old male experienced severe back pain and progressive lower limb weakness, resulting in a bed-bound state requiring catheterisation. A positron emission tomography scan confirmed prostate cancer with bone metastasis. Physical examination revealed minimal muscle contraction in the lower limbs (muscle power grade 2) and a low activity and functionality score (AKPS) of 30. The patient required bracing due to spinal instability. Despite receiving palliative radiotherapy and corticosteroids, he remained bedridden. Physiotherapy was initiated at home, beginning with passive and strengthening exercises. Gradually, the patient achieved a 60° sitting position within a week.

Results: After 2 months of consistent physiotherapy, the patient showed notable improvement. Four months later, he could walk with support, displaying a muscle power grade of 3 and an AKPS score of 60. Continued physiotherapy led to independent walking and resumption of activities of daily living, with muscle power reaching grade 4 and an AKPS of 70.

Conclusion: Early physiotherapy referral is essential in cases of malignant spinal cord compression, even for bedridden patients. Progressive rehabilitation helps improve mobility, functionality, and quality of life, supporting recovery through structured physical therapy.

Keywords: Malignant spinal cord compression, Prostrate cancer, Bone metastasis, Physiotherapy and functional Independence, palliative care, Home based physiotherapy, Muscle power grading, AKPScore, strengthening and mobilization, Quality of life

Malathi G. Nayak¹, Shwetha Prabhu¹, Naveen S. Salins²

¹Professor Community Health Nursing Department Manipal College of Nursing, Manipal Academy of Higher Education. Manipal, Karnataka,

²Professor and Head, Department of Palliative Medicine and Supportive Care Coordinator, Manipal Comprehensive Cancer Care Centre Kasturba Medical College Manipal

Email: radhika.r@manipal.edu

ABSTRACT

Objectives: Patients with haematological malignancies frequently experience complex physical, psychological, and spiritual concerns due to disease progression and intensive therapies. Despite these needs, palliative care services are often underutilised. This study aimed to assess the palliative care needs of adult patients with haematological malignancies and their caregivers in a tertiary care setting in India.

Materials and Methods: A descriptive survey was conducted from October 2022 to February 2023, involving 200 patients and their caregivers in oncology wards. The Needs Assessment Tool for Progressive Disease-Cancer was used to evaluate physical, psychological, and social needs. Data were analysed using descriptive statistics in Jamovi 2.0.0.

Results: Of the 200 patients, 55.5% reported no unresolved physical symptoms, while 9.5% had significant concerns, including fatigue, pain and breathlessness. Psychological distress was noted in 16% of patients, with 15.62% requiring referral to specialised services. Caregivers reported significant concerns regarding physical strain (2%) and psychological distress (14%). Only 9.55% of patients were referred to specialist palliative care services, highlighting a gap in timely palliative care access.

Conclusion: Despite a high burden of symptoms, specialist palliative care services are underutilised for patients with haematological malignancies. Early integration of palliative care can improve symptom management, reduce psychological distress, and enhance patients’ and caregivers’ quality of life. Training healthcare providers in palliative care principles and establishing standardised referral pathways are essential to address these unmet needs.

Keywords: Palliative Care Needs, Hematological Malignancies, Caregivers, Implications for Referral Practice

Ximena García-Quintero, Spandana Rayala, Archana Iyengar, Justin N. Baker, Michael McNeil

Pain Relief and Palliative Care Society, Hyderabad, India Email: megandoherty@gmail.com

ABSTRACT

Objectives: The death of a child is profoundly traumatic. In India and many other low- and middle-income countries, limited bereavement supports are available and there is an urgent need for effective bereavement strategies which are adapted to the local context. Our healthcare professional (HCP) workshop aimed to provide palliative care (PC) professionals with the tools and knowledge necessary to establish and maintain culturally sensitive bereavement support systems within their practices.

Materials and Methods: We conducted a 1-day bereavement workshop that featured sessions from bereaved parents, highlighting the practical importance of bereavement programs. It engaged HCP in leveraging care strategies for dying children, the foundation of bereavement programs, and their adaptation to cultural contexts using a design thinking approach, including an impact/effort matrix. Role-play and group discussions enhanced communication skills for engaging bereaved families.

Results: Forty HCPs participated in the workshop. They identified high-impact, low-effort strategies tailored to South Asia’s context, such as follow-up calls, memory-building activities, and annual remembrance events. Intensive strategies included home visits and training bereaved family members to mentor others. Essential communication materials distributed included guides, scripts, condolence phrases, and letter templates. A month after the workshop, the Golden Butterflies Children’s Palliative Care Foundation and Sri Ramachandra Institute of Higher Education and Research in Chennai, India launched the Bereavement Circle, a peer support program for bereaved parents.

Conclusion: A bereavement workshop provides bereavement training contextualised to local cultural practices. The successful implementation of the Bereavement Circle underscores the effectiveness of this approach, suggesting potential for broader application to enhance global bereavement support networks.

Keywords: palliative care, pediatrics, grief and bereavement, training and education, health workers

Mrs. Nibedita Mohanry¹, Prof.(Dr.) Niyati Das¹, Dr. Rajendra Sahoo², Dr. Sakir Ahmed³, Dr. Pratap ku Jena⁴

¹Kalinga Institute of Nursing Sciences, KIIT deemed to be University, Departments of ²Pain Management and Palliative Care and ³Rheumatology and Immunology, KIMS, ⁴KIIT School of Public Health, KIIT DU, Bhubaneswar, Odisha, India.

Email: nibedita.mohanty@kins.ac.in

ABSTRACT

Objectives: Palliative care is an essential aspect of health care, focusing on relieving suffering and improving the quality of life for patients with life limiting illnesses, the demand for palliative care is increasing rapidly due to the world’s aging population and the increase in cancer and noncommunicable diseases. Nursing Officers play a crucial role in providing palliative care. Therefore, the study was conducted to assess the level of knowledge and attitude toward palliative care among nursing officers.

Materials and Methods: A cross-sectional descriptive study was conducted among 128 nursing officers working at a tertiary care hospital, socio-demographic data were obtained by a self-administered questionnaire, two questionnaire tools (Palliative Care Knowledge Questionnaire, FATCOD) were used to assess the (knowledge and attitude). A convenience sampling method was employed.

Results: The study included 128 nursing officers, whose mean age was 30.6 ± 5.77 years and their mean experience was 8.1 ± 3.96 years. Even though 81% of the participants acknowledged the necessity for palliative care, only 17.1% had taken part in any educational activities on it. The majority of participants (82.81%) had no prior experience with palliative care. The study also discovered that nursing officers’ attitudes regarding dying patients were moderate (2.5–3.9) and their knowledge of palliative care was low (<40%) when analysed using the Palliative Care Knowledge Questionnaire-Basic questionnaire.

Conclusion: The study nursing officers had low knowledge levels in PC which was evident, although attitudes toward dying patients were generally moderate. These findings underscore the need for targeted training programs to enhance palliative care knowledge, attitude, and skills among nursing officers.

Keywords: Attitude, Knowledge, Nursing officers, Palliative care, Quality care

Dr. Trupti Yadav

Krishna College of Physiotherapy, Karad, Maharashtra, India. Email: vaishnavibadave519@gmail.com

ABSTRACT

Objectives: Patients receiving palliative experience high levels of functional loss, dependency on activities of daily living, and impairment in mobility. This affects important aspects of life, oftentimes leading to depression, poor quality of life, increased caregiver needs, increased health resource utilisation, and institutionalisation. Task-specific training has been used to enhance functional ability and energy conservation techniques to manage fatigue and conserve energy for individuals with chronic conditions, thus the combining effect of both needs to be studied further. Investigate the effectiveness of combining task-specific training (TST) and energy conservation techniques (ECT) on quality of life, and functional ability in patients undergoing palliative chemoradiotherapy.

Materials and Methods: This study was a randomised controlled trial enrolling 30 cancer patients receiving palliative care. A control group received standard care whereas the experimental group received combined TST and ECT. Outcomes were assessed at baseline, 2 and 4 weeks using validated measures. (1) EORTC QLQ C30 questionnaire. (2) Barthel index scale. (3) Modified Medical Research Council dyspnoea scale.

Results: Both the control group and intervention group showed improvements; however, comparing the intervention group showed significant improvements in quality of life (P < 0.01) and functional ability (P < 0.05). Patients reported enhanced physical and psychological well-being, reduced fatigue, and improved sleep quality.

Conclusion: Combining task-specific training and energy conservation techniques enhances quality of life, and functional ability in cancer patients receiving palliative care. These findings support interdisciplinary care and highlight rehabilitation intervention’s potential to improve outcomes.

Keywords: Palliative care, Quality of life, Palliative physiotherapy

Dr. Isha Jatin Shah, Dr. Shamali Poojary, Dr. Jayita Deodhar, Dr. Raghu Thota, Dr. T. M. Varun, Dr. Shruti Kamble, Dr. Ajila Ajith

Tata Memorial Hospital, Parel, Mumbai, Mharashtra, India. Email: sisha4574@gmail.com

ABSTRACT

Objectives: Although melanoma is rare in India, early-stage cases have high survival rates. However, metastatic melanoma often carries a poor prognosis. Specialist palliative care (SPC) plays a key role at all incurable stages, offering holistic support to patients and prioritising symptom management throughout the disease trajectory. The study was to assess SPC referral patterns and the symptom burden in advanced malignant melanoma patients referred to SPC.

Materials Methods: A retrospective analysis of electronic medical records of advanced melanoma patients who were referred to SPC from February 2023 to October 2024 was conducted. Demographics and clinical characteristics were recorded and symptom burden on the Edmonton Symptom Assessment System (ESAS) was assessed. Descriptive statistics were used for analysis.

Results: Of the 53 patients, the median age was 52 (interquartile range [IQR] 40–58) years, with 30 (56%) females. Most are diagnosed with mucosal 21 (39%) or cutaneous 20(37%) melanoma, with common metastases to nodes, liver, and bone. The majority 44 (83%) were early PC and 9 (17%) were best supportive care referrals. The median time from advanced melanoma diagnosis to SPC referral was 28 (IQR 14–94) days. Almost all the patients 52 (98%) were symptomatic with an average of five symptoms per patient. The most prevalent symptoms were pain 50 (94%), tiredness 42 (79%), poor well-being 37 (70%) and loss of appetite 31 (58%). The mean ESAS score for pain was 4.45 (standard deviation [SD] = 2.31), tiredness was 3.04 (SD = 2.22) and loss of appetite was 2.19 (SD = 2.30).

Conclusion: Advanced melanoma patients referred to SPC experience symptoms, primarily pain, fatigue, and loss of appetite. Future prospective studies are needed, to understand symptom burden for SPC integration and comprehensive symptom management.

Keywords: Melanoma, Symptom burden, Specialist Palliative Care, Edmonton Symptom Assessment Scale, Tertiary care cancer hospital.

Dr. Nipun Lamba, Dr. Sudha Srana, Dr. Seema Khandelwal

Mahatma Gandhi Hospital and College, Jaipur, Rajasthan, India. Email: chouhanlavi007@gmail.com

ABSTRACT

Background: DEFINATION – Lymphedema is a chronic condition involving lymph fluid accumulation, leading to swelling, discomfort and limited mobility, often impacting patients’ quality of life. It can arise as a primary condition or secondary to cancer treatments, infections or trauma. Lymphedema results from lymphatic insufficiency and inadequate lymph transport. Decreased lymph transport causes an accumulation of protein-rich interstitial fluid, leading to distention, proliferation of fatty tissue, and progressive fibrosis. Thickening of skin and hair loss may subsequently occur objectives. Lymphedema is generally classified as either primary or secondary.

Materials and Methods: Effective management is complex and demands a multidisciplinary approach to control symptoms and prevent progression

Interventions Studied: Comprehensive decongestive therapy (CDT) incorporating manual lymphatic drainage, compression therapy, skincare, and exercise. In addition, newer technologies such as pneumatic compression devices and advanced imaging were included in the study.

Participants: A cohort of 50 patients diagnosed with various stages of lymphedema was monitored over 6 months, receiving tailored CDT programs.

Data Collection: Patient-reported outcome measures (PROMs), limb volume reduction measurements, quality-of-life surveys, and clinical observations were collected at baseline, 3 months, and 6 months

Symptom Reduction: A significant reduction in limb volume (average of 25%) was observed in patients adhering to CDT, with enhanced outcomes in those using pneumatic compression devices.

Quality of Life Improvement: PROMs showed a 40% improvement in mobility, pain and daily activity levels.

Patient Adherence: Customised compression garments and education in self-management significantly improved adherence and patient satisfaction.

Early Diagnosis and Monitoring: The use of imaging technologies aided in earlier diagnosis, allowing targeted, less intensive interventions with faster symptom control.

Methods: This review aimed to undertake a broad investigation of commonly instigated conservative therapies for this population, including; complex physical therapy, manual lymphatic drainage, pneumatic pumps, oral pharmaceuticals, lymphopress, low-level laser therapy, compression bandaging and garments, limb exercises, and limb elevation.

Results: The average percentage volume change at the end of the trial achieved by each reviewed conservative therapy. This demonstrates the magnitude of the reduction (average) that can be achieved by the different conservative therapies.

Conclusion: This study demonstrates that comprehensive, patient-centred lymphedema management – including advancements in CDT, pneumatic compression, imaging, and patient education – can significantly reduce symptom burden and improve quality of life. These findings support the ongoing integration of personalised approaches and new technologies in lymphedema care, underscoring the importance of patient engagement and tailored strategies in achieving sustainable, positive outcomes.

Keywords: Lymphopress, PROM, Quality of life

Dr. Rari Rahman, Dr. Sahal Thafheem, Mr. Shamsudheen, Mrs. C. Athira, Mrs. Aysha Shabnam, Mr. Shakeel

IQRAA Thanal Pain & Palliative Care Centre, Calicut, Kerala, India. Email: saheera258@gmail.com

ABSTRACT

Background: The term bereavement is used – to describe the reaction to loss, the loss itself and as an experience more generally. This study explored bereaved family members’ satisfaction with care during the past 3 months of life for people with advanced illness, and associations between satisfaction with care and characteristics of the deceased individuals and their family members.

Methods: A cross-sectional survey design is used. Subjects of study included patients died at home or hospital that were registered under our centre over a span of 12 months. Survey is done by nurses, social workers and psychologists.

Conclusion: Family members of deceased patients with cancer were more likely to have a higher satisfaction with care. The type of care, educational qualification and the relationship between the caregiver and patient.

Keywords: comprehensive care, wound management, pressure relief, nutritional support, infection control, and pain management.

Shankar Prasad Nagaraju, Anuja Damani, Naveen Salins, Ravindra Prabhu Attur, Swathi Nayak Ammunje

Department of Renal Replacement Therapy and Dialysis Technology, Manipal College of Health Professions, Manipal Academy of Higher Education, Manipal, Karnataka, India.

Email: bharathi.parkala@manipal.edu

ABSTRACT

Objectives: End-stage kidney disease (ESKD) patients commonly have a high symptom load, which can have a negative impact on their quality of life if not managed. This study aims to identify and investigate the pattern of symptom burden using ESAS-r and quality of life using the EQ-5D-5L haemodialysis and non-dialysis ESKD patients from a tertiary care centre in India.

Materials and Methods: A cross-sectional study involved 247 ESKD patients aged 18 and older who were willing to participate. Of these 171 were receiving haemodialysis and 76 were non-dialysis patients. Descriptive statistics were used for data analysis, which was carried out with Jamovi 2.3.

Results: The haemodialysis group had a greater total symptom burden of 81.3%. Over 80% of ESKD patients, both haemodialysis and non-dialysis, experience fatigue, making it the most prevalent symptom (P < 0.001). Haemodialysis patients reported moderate to severe symptoms such as fatigue, pain, itching, depression and anxiety are more pronounced (P < 0.001). In the EQ-5D-5L evaluation, haemodialysis patients (53%) experience pain and discomfort at a higher rate than the non-dialysis group (47%), with a (P < 0.05). Both the groups experience a high and positive correlation between their quality of life and symptom load (P < 0.01).

Conclusion: Our study highlights the pattern of symptom burden and quality of life in our ESKD patients and the need for comprehensive and regular assessments using objective tools that may help to improve patient well-being in both ESKD haemodialysis and non-dialysis populations.

Keywords: Symptom Burden, Quality of Life, End stage kidney disease, Hemodialysis

Dr. Gayathri Palat, Dr. Archana Iyengar, Dr. Jagadeeshwar Reddy, Dr. G. C. Robbie, Dr. Soundarya, Ms. Vineela Rapelli

Pain Relief and Palliative Care Society Hyderabad, Telangana, India Email: plaxmikumar55@gmail.com

ABSTRACT

Objectives: Bereavement is the experience of losing someone important. Since diagnosis, the Pain Relief and Palliative Care Society teams offered compassionate support at MNJ Cancer Hospital, Niloufer Children’s Hospital, Mandara Children’s Hospice and others. Families and teams developed close bonds during care and bereavement. The aim is to honour lost children and unite grieving families. To honour and remember the life of children, we lost and support the grieving families, forming a network of bereaved families.

Materials and Methods: Last year, the palliative care team assisted 160 bereaved families. A paediatric bereavement support group was held, inviting 25 parents randomly chosen with the opportunity for siblings and extended family to join. The event had 22 participating families, including members of different teams, a candlelight ceremony, prayers, service explanations, family sharing, gift distribution and moments for personal interaction with oncologists and paediatric palliative care (PPC) team. Families expressed gratitude, finding solace in sharing and connecting, leading to a desire for ongoing involvement and advocacy for PPC in the community.

Results: Families found solace in sharing their grief and memories with the team and each other, expressing gratitude for the connections made. They also expressed interest in maintaining contact with other parents and the palliative care team, offering to support paediatric palliative care advocacy. Plans were discussed to address ongoing support needs and improve the paediatric palliative medicine program.

Conclusion: Bereavement care is a significant aspect of paediatric palliative care services and support groups aid in creating a healthier coping environment for families.

Keywords: Perinatal & Pediatric Bereavement, Sharing and Healing, Compassionate connection and networking

Dr. Firdous Ahmed

JLN Medical College, Ajmer, Rajasthan, India. Email: firdousahmed632@gmail.com

ABSTRACT

Objecives: Enhancing quality of life (QoL) is a primary goal in palliative care. While pharmacological treatments are well-established, lifestyle interventions such as personalised diets and physical activity programs are gaining attention as complementary approaches. This study explores the impact of these interventions on QoL in palliative care patients, focusing on physical functioning, fatigue, emotional well-being and overall health status.

Materials and Methods: Fifty palliative care patients were observed over a 12-week period as they adopted tailored lifestyle interventions, including nutrient-dense dietary plans and light physical activities. QoL was assessed using the EORTC QLQ-C30, covering domains such as physical functioning, fatigue, emotional well-being and overall health. Measurements were recorded at baseline, 6 weeks and 12 weeks.

Results: Patients showed significant improvements in physical functioning (+12%) and emotional well-being (+18%) over the 12 weeks. Fatigue levels decreased by 22%, while pain interference with daily activities was reduced by 5%. Overall, QoL ratings increased by 14%. Parameters such as sleep quality, appetite and social functioning also exhibited positive trends, highlighting the holistic benefits of the interventions.

Conclusion: The findings suggest that integrating tailored lifestyle interventions can enhance multiple dimensions of QoL, including physical, emotional and social well-being, in palliative care patients. These improvements underline the importance of holistic care approaches and encourage the inclusion of lifestyle-based strategies in routine practice.

Keywords: Lifestyle interventions, Diet, Exercise, Aromatherapy, Music therapy, Palliative care patients, Guided breathing, Mindfulness meditation Yoga, Holistic, Non pharmacological

David Davey

Golden Butterflies Children’s Palliative Care Foundation Chennai, Tamil Nadu

Email: daviddavey74@gmail.com

ABSTRACT

Functioning with a chronic illness involves ongoing physical demands and a significant holistic strain. With paediatrics, their lives are centred on medical routines, frequent procedures and lengthy hospitalisations. These experiences often overshadow the usual pleasures of childhood – exploration, play, emotional and meaningful social connections. Children with cancer from underprivileged socioeconomic backgrounds face significant challenges that compromise their physical, emotional, social and academic well-being. This ongoing mixed-methods study combines demographic survey focusing on financial aspect, administering PEDSQL questionnaire for quantitative data and qualitative interviews on 15 number of children with cancer and in treatment of the age group 10–17 years from Chennai tertiary care hospital, investigating the aspects of quality of life addressing physical, emotional, social and academic functioning. Data collection is ongoing and data analysis is yet to be done. It is expected to bring a comprehensive understanding of childhood cancer, and low socioeconomic background in quality of life therewith facilitating targeted interventions to mitigate the difference in the quality of life. This study is expected to provide valuable insights into the multifaceted impact of childhood cancer on quality of life, especially for children from underprivileged backgrounds. By addressing physical, emotional, social and academic challenges, the findings aim to guide targeted interventions for ongoing and post-completion of their chemotherapy treatment, to enhance support and overall functioning.

Keywords: Pediatric cancer, Quality of Life (QOL), Palliative care, Low-income families, Socioeconomic impact, PEDSQL, Supportive care, Emotional functioning, Nutrition support, Flexible education, Chennai, India

Dr. Zannat Ara, Dr. Megan Doherty, Syed Musfique Ali, Suprio Labonno

¹Science Po 77 Rue Bellot, 76600 Le Havre, France, ²Department of Pediatric Hematology & Oncology, Dhaka Medical College, Dhaka, Bangladesh. Email: zannatara28@gmail.com

ABSTRACT

Objectives: Access to palliative care for children suffering from malignancy is quite meagre in underdeveloped or developing nations such as Bangladesh. Social stigma, poor infrastructure and lack of awareness from the side of patients and caregivers may delay palliative consultation. Since oncology nurses build a close bonding with patients and parents, their insights and technical abilities also greatly influence the effectiveness of paediatric palliative care (PPC) services. In this study, oncology nurses’ perceived knowledge, attitude toward needs and barriers to implementing palliative care were viewed and their insights were traced.

Materials and Methods: The qualitative study used purposive, convenience sampling to select ten oncology nurses (n = 10) from different tertiary-level hospitals. They were all invited to a central location for a focus group discussion. We used thematic content analysis for analysing the data.

Results: Nurses’ perceptions of palliative care focused on physical symptoms and stress management. Most of them could not draw a difference between palliative care services and end-of-life care. Furthermore, nurses believed that their role in making decisions regarding palliative care was not welcomed. Regarding implementation barriers, lack of monitoring, guidance, skill training and proper guidelines on counselling, communication, symptom management, limited recourse and less cooperation from physicians were mostly highlighted.

Conclusion: In this study, oncology nurses’ perceived knowledge, attitude, needs and barriers to palliative care were viewed and insights were traced. For the structured PPC changes in policy and administration, awareness and training of professional care providers are required.

Keywords: Focus group discussion, Nurses’ perception, Paediatric palliative care, Thematic analysis

Veronique Dinand, Savio Ponnachan, Sheetal Gaikwad, Lakshmi Krishnan, Ashish Telgote, Mayur Ghoghari

Bai Jerbai Wadia Hospital for Children, Mumbai, Maharashtra, India Email: verodinand@gmail.com

ABSTRACT

Background: Home care (HC) is an integral part of paediatric palliative care (PPC). We started hospital-based PPC in 2019 in our paediatric tertiary-care hospital and Titli HC in 2022. As part of a PPC Leadership Institute project, the team lead aimed at expanding HC services to children with serious illnesses referred from other hospitals in Mumbai.

Methods: This 1-year project (January–December 2024) planned creating a second HC team and promoting home-based PPC among healthcare professionals from other hospitals. SOPs for registration of outside referrals and a brochure were made. Networking and collaboration with PPC providers in government/trust hospitals and adult PC providers of Mumbai was established.

Outcome Studied: Number of home visits, unique patients being cared for at home and number of outside referrals; feedback from families on HC, HC team members and referring healthcare professionals.

Results: Staff recruitment was the biggest challenge but was successfully completed. About 520 people benefited from the project activities (January– Mid November), with a regular increase in the number of home visits, beneficiaries, new cases registered for HC in our hospital and new referrals from other hospitals. Parent-reported outcomes were based on 23 HC feedback forms. All were satisfied with the PC team’s management of the child’s physical symptoms, and almost all with the team’s ability to connect with the child, relieve relatives’ emotional stress. Feedback from referring hospitals and HC team members were very positive.

Conclusion: The leadership project enabled a growth of home-based PPC services and extension to other hospitals catering to children with serious illnesses.

Keywords: Palliative Care, Child, Home Care Services, Leadership, Health Services Accessibility, Interinstitutional Relations, Program Development, Program Evaluation, Referral and Consultation, Patient Satisfaction, Feedback, Family, Health Personnel

Dr. T. Balaji, Dr. Deboral, Dr. Nilla

PSG Superspeciality Hospital, Coimbatore, Tamil Nadu, India. Email: deepu.morningdew@gmail.com

ABSTRACT

Objectives: End-of-life care is a crucial aspect of treatment for patients with cancer and other life-limiting illnesses. Integrating palliative care with the intensive care unit (ICU) can enhance the quality of care at the end of life, emphasising the core principle of palliative care: Dignity in death.

Materials and Methods: This E-poster presents the case of a 49-year-old female with metastatic colon carcinoma who experienced breathing difficulties due to lung metastasis. She was admitted to the ICU for further management.

Results: The patient was counselled by palliative team and latter opted for supportive care management. She remained as an inpatient for 40 days and eventually passed away peacefully in the palliative care ward.

Conclusion: For patients with life-limiting illnesses, dying in the ICU can be an extremely challenging experience. Palliative care plays a critical role in managing symptoms, providing emotional support to patients and their families and guiding them through difficult decisions. The care extends beyond death, offering bereavement support to help loved ones heal. This E-poster highlights the case of a single mother whose transition from the ICU to the palliative care ward, with the help of palliative support, ensured a peaceful end-of-life experience and the best possible care in her final days.

Keywords: Dying in the ICU, challenging experience, Palliative care manages, symptoms, Family, decision making, Bereavement care”

Dr. C. Santhini, Dr. Praneeth Suvvari, Dr. Praveen Kumar Kodisharapu, Dr. Basanth Kumar Rayani

Basavatarakam Indo American Cancer Hospital & Research Institute, Hyderabad, Telangana, India.

Email: chandransanthu95@gmail.com

ABSTRACT

Objectives: Pain is one of the most common and distressing symptoms in cancer patients. Opioid analgesics are the mainstay treatment for pain management in cancer patients. Cancer patients often believe that opioid analgesics have many side effects and leads to addiction. An open-ended interview was conducted to identify the factors which are acting as barriers for the regular usage of opioids in cancer patients.

Materials and Methods: This is an open-ended interview pilot study being conducted in Basavatarakam Indo-American Hospital. Eligible patients are those who come to palliative care out-patient department for review of medications and those who are not compliant with opioids.

Results: This is an ongoing study, till date 18 samples have been collected. In this sample size, 50% have stopped medication as pain was not present, 22% as their hometown is far away and travel distance is more, 11% due to personal reasons, 6% due to their side effects and another 6% stopped as they could not afford opioids.

Conclusion: Opioids play a major role in alleviating the distress caused by pain. In the ongoing study, it is found that 22% are not compliant due to long distance. By this study, we will be able to improve the availability of opioids in all districts and to better understand the barriers involved with non-compliance in opioids.

Keywords: Compliance, Opioids, Factors

A. Manoj Gowda

Akash Institute of Medical Sciences & Research Centre, Prasannahalli Toad, Devanhalli, Bangalore, Karnataka, India

Email: drarjunmb@gmail.com

ABSTRACT

Background: Chemotherapy-induced gastrointestinal symptoms such as nausea, dyspepsia and vomiting are common in cancer patients receiving palliative care, significantly affecting their quality of life. RAFT formulations, which contain alginate-based compounds, have been shown to form a protective barrier against gastric acid. However, their role in managing chemotherapy-induced gastrointestinal symptoms remains underexplored. This case series investigates the potential benefits of RAFT formulations in such patients.

Description: Our first case involves a 64-year-old male with advanced colon cancer on palliative chemotherapy, who experienced persistent nausea and bloating despite conventional therapy. The second case is of a 69-year-old female with ovarian cancer receiving paclitaxel and cisplatin, who suffered from nausea, vomiting and early satiety. The third case involves a 71-year-old male with lung cancer and cerebral metastases and fourth case is of a 79-year-old patient with metastasised prostate cancer experiencing retrosternal burning, nausea and pyrosis. All four patients were treated with RAFT preparations, leading to significant improvement in their symptoms.

Conclusion: These cases suggest the potential of RAFT formulations in managing chemotherapy-induced gastrointestinal symptoms and warrant further research to evaluate the long-term safety, efficacy and potential drug interactions of RAFT formulations in the context of chemotherapy, ensuring their optimal use in palliative care settings.

Keywords: Alginate , raft , dyspepsia , chemotherapy

Dr. Arshi Taj

Government Medical College, Srinagar, Jammu and Kashmir, India. Email: gupta.ayushi.15158@gmail.com

ABSTRACT

Objectives: Advanced Colon Cancer often presents with significant pain that requires effective management to improve patient’s quality of life. It needs to be safe, effective and tailored to individual requirement. This retrospective study aimed to evaluate the use of various analgesic modalities in the management of patients with Advanced Colon Cancer.

Material and Methods: This was a retrospective study in which medical records of 33 patients of Advanced Colon Cancer in the Pain Clinic of Government Medical College, Srinagar were studied. These patients had a numeric pain rating scale (NRS) of 9–10 on presentation. The analgesic modalities included opioid-morphine, non-steroidal anti-inflammatory drugs (NSAIDs), neuropathic drugs and even block to patient refractory to such treatment.

Results: The study found that the total morphine used was 28.23 g in 33 patients along with NSAIDs and drugs like gabapentin for pain relief and NRS improved to 3–4. The adjuvants were added to improve the treatment outcome and reduce the requirement of morphine. However, one patient who was refractory to all drugs was given ganglion impar block for pain relief.

Conclusion: This study highlights the importance of tailored, holistic and multimodal approach for pain management in advanced colon cancer patients. While opioids remain a cornerstone for pain relief, adding other drugs provide optimal pain control and enhance the quality of life.

Keywords: Colon Cancer, Analgesic Modalities, Neuropathic drugs, Morphine, Ganglion impar block

Savio Ponnachan, Mayur Ghoghari, Veronique Dinand

Bai Jerbai Wadia Hospital for Children , Mumbai, Maharashtra, India Email: sheetalgaikwad1017@gmail.com

ABSTRACT

Background: Children with life-threatening illnesses and poor prognosis benefit from comfort care at home rather than futile aggressive/intensive hospital-based treatment, to increase quality-of-life. Very few palliative care programs provide end-of-life care (EOLC) for children at home. We describe our experience from a tertiary paediatric hospital.

Methods: Retrospective study of children discharged for EOLC from 2022 to 2024. Emergency kit was provided and liaison with local doctor sought before discharge. Team taught parents nursing care, feeding and equipment handling. 24*7 telephone support was provided. The first home visit by multidisciplinary team was planned on the day after discharge.

Results: Fifty children were included (advanced cancer-17, congenital malformations-14, neurological insult-8, cerebral palsy/GDD-5, genetic disease-4 and others-2). Most non-cancer children were discharged from paediatric intensive care unit/neonatal intensive care unit after limitation of life-sustaining therapies, on continuous positive airway pressure, oxygen or off-oxygen. Three children died on the day of discharge. For the rest, 1–12 home visits were done.

Interventions: Symptomatic management (pain, dyspnoea, bleeding, gastrointestinal symptoms, etc.) and emotional support (anxiety, non-acceptance, fear of future after child’s death, fear of not doing enough for the child’s needs). Parents were primed when death was near and encouraged to call relatives, siblings involved in care, memory-making, etc.

Outcome: Thirty-eight died at home/one in hospital at a median of 43 days (0–617). 11 children are alive at a median follow-up of 13 months and remain on home-care. They were encouraged to follow-up in the hospital.

Conclusion: Children sent home for EOLC display significant prognosis uncertainty. Benefits of home-based EOLC include empowering parents to provide EOLC, family-centred physical/emotional/spiritual care.

Keywords: EOLC, Children, Home care, Quality of life, Emotional & spiritual care

Dr. Nipun Lamba, Dr. Sudha Sarna, Dr. Seema Khandelwal

Mahatma Gandhi Medical College and Hospital, Jaipur, Rajasthan, India Email: Karishmajainb53@gmail.com

ABSTRACT

Objectives: Cancer pain is a complicated entity which can present at any stage of the disease and often difficult to manage with oral systemic therapy. Around 10% of the patients require interventional pain management techniques at some point in their disease course. The SPG (Meckel’s ganglion) is located in the pterygopalatine fossa. It lies posterior to the middle turbinate of the nose. Transnasal sphenopalatine ganglion block is a simple, easy and cost effective technique to manage cancer pain in cases of head and neck cancers not responding to medical management and also helps in reducing oral intake of analgesic medications. We report a case of a 45-year-old male known case of Ca tonsil who had refractory pain in the throat not responding to oral analgesic including oral morphine. Patient was planned for 5 consecutive sittings of sphenopalatine ganglion block to provide pain relief and to reduce strong opioid use.

Materials and Methods: Patient pain score was evaluated using a numerical rating scale both pre-procedure, which was 6 (on oral morphine 20 mg 4 hourly) and post-procedure was 1–2 (without oral morphine after 5 day sittings). All vital parameters were monitored and haematological investigations undertaken. A proper clinical history including drug history and allergic history was obtained. A cotton tip applicator was used and 3 mL of 2% lidocaine was used for the procedure and introduced in the affected side nostril.

Results: Patient post-procedure after 1^st sitting had 80% relief in pain without any oral analgesic medication. After five sittings, patient’s pain score on numeric pain rating scale was 2–3 without any oral analgesic medication and was relieved with a single dose of Tab. tramadol per day. Patient was taken off oral morphine.

Conclusion: Interventional pain management helps reduce use of oral analgesic medication and strong opioid use. Transnasal sphenopalatine ganglion block is a cheap, easy and effective procedure with good outcomes. Nerve blocks are effective procedures for refractory and difficult pain.

Keywords: Sphenopalatine ganglion block, Cancer pain, Transnasal nerve block, Opioid reduction, Interventional pain management, Refractory head and neck cancer pain

Trivandrum Institute of Palliative Sciences (TIPS), Thiruvananthapuram, Kerala, India.

Email: anusree.pv@palliumindia.org

ABSTRACT

Objectives: Spinal cord injury (SCI) is a relatively low-incidence, high-cost injury that results in tremendous change in an individual’s life. The spouse of an acute SCI person is also a victim of events beyond their control. SCI can impose significant challenges on a healthy marital relationship and overall well-being. Despite a higher incidence of SCIs in Kerala, there is a considerable knowledge gap in understanding marital satisfaction in spinal cord-injured persons, which is very crucial.

Materials and Methods: This study aims to assess Marital Satisfaction in the partners of spinal cord-injured patients. We used a consecutive sampling method, selecting participants as they became available over a specified period. Participants were partners of spinal cord-injured patients enrolled in the palliative care centre, and the total sample size was 180. Marital Satisfaction was assessed using the Marital Satisfaction Inventory.

Results: The result showed that marital satisfaction typically declines immediately after the injury, mainly due to the adjustment period. Key factors impacting the relationship include caregiving responsibilities, changes in sexual intimacy, family support and financial constraints. Couples with better communication and support systems maintain higher marital satisfaction over time.

Conclusion: This study is unique and the first of its kind done in a palliative care setting. It aims to understand the personal problems and issues faced by a caregiver or a partner. It draws attention to rehabilitation programs and counselling support services, ultimately enhancing the quality of life for individuals with spinal cord injuries and their families.

Keywords: Marital satisfaction, spinal cord injury, palliative care, partners

Pallium India, Thiruvananthapuram, Kerala, India.

Email: rajika.kurup@palliumindia.org

ABSTRACT

Objectives: Spirituality influences how children view life; they openly discuss their faith and related matters without necessarily being prompted by adults. They employ spirituality to interpret their experiences, especially those involving death or hardship. Emotional intelligence (EI) is crucial and can significantly impact children’s ability to cope with illness, manage stress and maintain psychological well-being. This study explores the relationship between EI and spirituality among children with and without life-limiting illnesses, aiming to identify differences and correlations between these attributes.

Materials and Methods: A comparative cross-sectional study assessed EI and spirituality levels in two groups of 200 children (those with life-limiting illnesses and those without) aged between 12 and 15 years using the TEIQue-ASF and an adapted Youth Spirituality Scale with consecutive sampling for data collection. The investigator sought consent from parents and assent from participants.

Results: Statistical analysis revealed that children with life-limiting illnesses had significantly higher EI and spirituality scores than their healthy peers. Pearson’s correlation analysis further indicated a positive relationship between EI and spirituality in both groups, with a stronger correlation observed among children with life-limiting illnesses.

Conclusion: The findings suggest that higher EI and spirituality serve as adaptive responses in children with life-limiting illnesses, aiding in coping and resilience. Integrating EI and spirituality into holistic paediatric care, especially in palliative settings, may enhance psychological well-being and support children’s coping mechanisms.

Keywords: Spirituality, Palliative care, paediatric, life limiting illness, adolescence, children, pediatric palliative care, adolescents, life limiting illness, emotional intelligence.

Dr. Raghavendra Ramanjulu, Dr. Amelia Sahana Michael

Aster CMI Hospital, Bangalore, Karnataka, India Email: manojrmanor4@gmail.com

ABSTRACT

Objectives: Pain management is a cornerstone of palliative care, for patients experiencing acute pain due to a life-limiting illness or treatment-related complications. Patient-controlled analgesia (PCA) has emerged as a critical tool in this context. PCA allows for a tailored timely management of pain in the ward, empowering the patient to feel control at a time when control seems elusive. This system ensures consistent relief while minimising delays from person/system factors, thus reducing the distress caused by unrelieved pain and enhancing patient/caregiver satisfaction. By bridging the gap between effective pain relief and patient autonomy, we hereby describe the outcome of using PCA for pain relief in a Quaternary referral centre’s Palliative care unit.

Materials and Methods: This is a prospective study at a Multispecialty Quaternary Care Centre over a period of 6 months, which includes inpatients with cancer and non-cancer pain who were treated using the PCA delivery system. An excel sheet documented the demographic data, diagnosis, cause of pain and numeric pain rating scale score at initiation (Day 0), Day 1, Day 2 and Day 3, along with breakthrough doses. A survey was conducted at the time of discharge using a Likert scale to document the benefits/burden of the PCA delivery system among the patient, caregiver and nursing professionals. The Statistical Package for the Social Sciences software is used to analyse the data.

Results: The study is ongoing and the results will be presented at the conference.

Conclusion: This study aims to showcase the importance of PCA in the palliative care setting. The study conclusions will be presented at the conference.

Keywords: Patient Controlled Analgesia, Pain Crisis, PCA, Acute Pain Management, Palliative Care, Cancer Pain, Non-Cancer Pain, Breakthrough Pain

Ayesh Das¹, Republica Sridhar², Sri Sakthi Doraikannan¹, Gauthaman Kalamegam²

¹Department of Public Health Dentistry; Saveetha Dental College, Saveetha Institute of Medical and Technical Sciences, Saveetha University,

²Department of RMD Pain and Palliative Care Trust, RMD Group of Hospitals, Chennai, Tamil Nadu, India.

Email: drayesh03@gmail.com

ABSTRACT

Objectives: Effective communication is central to quality palliative care (PC) and essential for meeting the diverse needs of patients across all age groups. This study explores communication preferences and challenges in palliative care settings, analysing how these vary by age. To identify age-specific communication needs and preferences of palliative care patients and to assess how communication strategies impact patient satisfaction and care outcomes.

Materials and Methods: This cross-sectional study involved 188 participants receiving palliative care in (insert location). Participants were divided into age groups: paediatric (under 18), adult (18–64) and elderly (65 and above). Data were collected through structured interviews and surveys addressing communication preferences, barriers to effective communication and satisfaction levels. Statistical analyses, including analysis of variance and Chi-square tests, were conducted to examine age-related differences.

Results: Age-specific trends were identified in communication preferences. Paediatric patients and their caregivers emphasised the need for age-appropriate language and reassurance, while adult patients preferred open and detailed discussions about treatment options and prognoses. Elderly patients valued empathetic communication but often reported challenges related to cognitive impairments. Satisfaction scores varied by age group, with paediatric and elderly groups reporting higher satisfaction when their specific communication needs were met (P &lt; 0.05). Key barriers included language complexity, emotional distress and cognitive limitations.

Conclusion: Tailoring communication strategies to the specific needs of different age groups enhances patient satisfaction and can improve care outcomes in PC. Future research should explore targeted interventions to address the unique communication challenges of different age demographics in palliative care settings.

Keywords: Age-specific needs, Communication, Cross-sectional study, Palliative care, Patient satisfaction

Ms. Pranali Lad

King George V Memorial Trust, Mumbai, Maharashtra, India. Email: kgvmpcc2021@gmail.com

ABSTRACT

Objectives: Sukoon Nilaya was established during the COVID-19 pandemic to provide holistic care for patients with chronic illnesses. Launching a healthcare facility in such a crisis came with unique challenges, including strict lockdowns, limited resources and ensuring safety while delivering quality care.

Materials and Methods: The setup required overcoming hurdles such as obtaining government licenses and regulatory approvals, which were delayed due to restricted operations. Networking with hospitals to ensure patient referrals was another challenge, as healthcare systems were overwhelmed with COVID-19 cases. Recruiting and training staff remotely, sourcing medical equipment and establishing protocols for infection control were critical tasks. Teleconsultation and virtual planning were introduced to maintain continuity.

Results: Despite the obstacles, Sukoon Nilaya successfully started its services, supporting over 2,000 patients. Partnerships with donors and hospitals helped secure resources and extend services. Training programs empowered caregivers, and occupational and speech therapies improved patient outcomes. Adherence to strict safety protocols ensured a safe environment for patients and staff.

Conclusion: Setting up Sukoon Nilaya highlighted the challenges of launching healthcare initiatives during a crisis. Delays in approvals, networking limitations and adapting to restricted conditions tested the team’s resilience. However, innovation, strategic planning and community collaboration helped overcome these hurdles. Sukoon Nilaya is now a model for providing compassionate care even in the toughest circumstances.

Keywords: Facilities, Palliative care, Pandemic

Dr. Mohd Sadiq Malla, Dr. Arshi Taj

Government Medical College, Srinagar, Jammu and Kashmir, India. Email: drsaimaakhter11@gmail.com

ABSTRACT

Objectives: Anorexia is a common and distressing symptom in patients with malignancy, significantly impacting their quality of life, nutritional status and overall prognosis. Olanzapine, an atypical antipsychotic, has emerged as a potential therapeutic option. Its effects on dopamine, serotonin and histamine receptors are thought to alleviate nausea, enhance appetite and improve caloric intake. Several studies and case reports have demonstrated olanzapine’s efficacy in managing cancer-related anorexia, particularly in improving appetite, weight maintenance and patient-reported outcomes. The drug is generally well-tolerated, with sedation and metabolic effects being the most common adverse events.

Materials and Methods: This prospective study was conducted in pain clinic of Government Medical College, Srinagar. Twenty patients suffering from malignancy undergoing chemotherapy received olanzapine 2.5 mg once daily. Primary outcomes were weight gain and improvement in appetite.

Results: Our study evaluated the efficacy and safety of olanzapine in managing anorexia associated with malignancy in the patients undergoing chemotherapy. We get the findings: (1) Improved appetite and caloric intake. (2) Weight stabilisation and gain. (3) Reduction in nausea and vomiting. (4) Quality of life improvements.

Conclusion: Our study showed that low-dose olanzapine (2.5 mg once daily) may provide benefits in weight gain for patients with cancer associated anorexia. Olanzapine doses as low as 2.5 mg once daily have been shown to produce significant improvement in appetite.

Keywords: Olanzapine, Anorexia, Malignancy

Dr. Vijayshree Patil, Dr. Adnan Khan, Dr. Husain Burhanpurwala, Mudita Yadav, Ananya Chavan

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

Email: sandhya.rajhans12@gmail.com

ABSTRACT

Objectives: Sukoon Nilaya Palliative Care Centre, established in 2021 under the King George V Memorial Trust, is dedicated to holistic care for non-cancer patients. It focuses on meeting physical, emotional, spiritual and financial needs while offering exceptional training for caregivers. This paper highlights key performance indicators (KPIs) that measure Sukoon Nilaya’s impact on patient care, caregiver support and service quality.

Materials and Methods: Data were collected on patient demographics, bed occupancy, satisfaction surveys and caregiver programs. Services included inpatient department, outpatient department, teleconsultations and therapies.

Results: (1) Patient Reach: Over 1,100 patients served with a 57% increase in bed occupancy; 20 IPD and 5 rehab beds at full capacity. (2) Patient satisfaction: 98% satisfaction rate reflects high-quality care. (3) Caregiver support: 605 caregivers supported, emphasising family involvement. (4) Service expansion: Partnerships with hospitals (KEM, Nair,JJ) and organisations like Budhrani Trust increased outreach. (5) Training and research: 54 awareness sessions conducted.

Conclusion: Sukoon Nilaya demonstrates how KPIs can evaluate and enhance non-cancer palliative care. These metrics show significant improvements in patient care, caregiver support and community awareness, underscoring the importance of tailored care and robust systems to improve quality of life.

Keywords: Caregiver support, Community awareness, Key performance indicators, Non-cancer palliative care, Patient satisfaction, Sukoon Nilaya

Dr. Mamta Parihar, Raju Ram Parihar

Indira Gandhi National Open University, Delhi, India. Email: scholararvind@gmail.com

ABSTRACT

Objectives: Death is an inevitable part of life, yet it remains a difficult subject to address. Non-communicable diseases, particularly cancer, have emerged as leading causes of death, prompting a growing demand for effective palliative care. Despite its inclusion in the National Health Policy, palliative care has received limited attention in nursing education, leaving a gap in knowledge and practice among healthcare professionals. This study aims to evaluate the impact of End-of-Life Nursing Education Consortium (ELNEC) training on the knowledge and attitudes of nursing officers in selected hospitals in India. By assessing improvements through a questionnaire-based approach, the study seeks to highlight the importance of integrating comprehensive palliative care training into nursing education to enhance care delivery.

Materials and Methods: The study was conducted among nursing officers from four hospitals: SAIMS Indore, SSH MBGH Udaipur, AIIMS Mangalagiri and AIIMS Jodhpur, with a total of 183 participants. A pre-test questionnaire was administered to assess baseline knowledge and attitudes. This was followed by a 3-day ELNEC training program. Post-test questionnaires were used to evaluate changes in knowledge and attitudes after the training. Statistical analysis was performed using the Statistical Package for the Social Sciences version 22.0, with a significance threshold set at P < 0.05.

Results: The pre-test revealed that 85.25% of participants had poor knowledge, 13.11% had average knowledge and only 1.64% demonstrated good knowledge. Following the ELNEC training, post-test results showed significant improvement, with 44.81% achieving poor, 38.25% average and 16.94% good knowledge (P = 0.000). Attitudes toward death and dying also improved significantly. In the pre-test, 54.10% exhibited negative attitudes, 42.62% neutral and 3.28% positive attitudes. Post-training, these shifted to 39.34% negative, 45.36% neutral and 15.30% positive attitudes (P = 0.001).

Conclusion: The ELNEC training program proved to be an effective intervention for enhancing knowledge and improving attitudes among nursing officers. It is recommended that all healthcare professionals acquire fundamental competencies in pain management and palliative care to better address the needs of patients and their families.

Keywords: End of life nursing education consortium (ELNEC), Knowledge, Attitude

Dr. Nikhila Karanth, Dr. Nandini Vallath

St. John’s Medical College and Hospital Bangalore, Karnataka, India. Email: nandacprem@gmail.com

ABSTRACT

Objectives: Parents of children with serious illnesses face emotional, physical, social and parenting-related concerns. Early identification of their distress using the Distress Thermometer-Parents can help align them with necessary resources. This study aims to assess the distress levels of parents using the Distress Thermometer-Parents, which includes a score (0–10) and a problem list covering practical, social, emotional, physical, cognitive and parenting domains.

Materials and Methods: A cross-sectional descriptive study was conducted on 20 parents of children with serious illnesses admitted to the paediatric hemato-oncology, paediatric surgery and paediatric nephrology wards of a multispecialty academic hospital. Data were collected using the validated Distress Thermometer-Parents through structured interviews. Responses were recorded in Microsoft Excel and analysed.

Results: Fathers reported higher distress levels (mean = 8.90, standard deviation [SD] = 1.45, median = 9.00) compared to mothers (mean = 7.20, SD = 1.03, median = 7.00), indicating a 23.6% higher distress score in fathers. Distribution of domains is as follows: Practical (fathers 69%, mothers 67%), family/social problems (fathers 34.09%, mothers 50%), emotional concerns (fathers 66.67%, mothers 54%), physical problems (fathers 50%, mothers 45.7%), cognitive problems (fathers 18.18%, mothers 15%) and parenting problems (fathers 63.64%, mothers 54%). Practical issues, such as finance, work and childcare, were prominent among fathers, while mothers faced difficulties related to parenting, emotions and talking about the illness.

Conclusion: The study found that fathers experienced higher distress than mothers, with practical and emotional concerns being the most distressing for both. Identification of most distressing concerns using distress thermometer – parents allows us to tailor the supportive measures according to the individual family needs, and thus, we recommend routine use of this tool.

Keywords: Distress of parents, seriously ill children, Social, emotional, practical, physical, problems

Dr. Arshi Taj

Government Medical College Srinagar, Jammu and Kashmir, India. Email: alithesolitarygypsy@gmail.com

ABSTRACT

Objectives: Cancer remains a major public health concern, with its incidence varying across regions and demographics. Kashmir, with its unique geography and cultural diversity, provides a critical setting for studying these patterns. This study explores the demographic and gender-specific distribution of cancer cases in patients from a tertiary care hospital in Srinagar. To analyse cancer distribution by type, gender and demographic factors among Kashmiri patients, offering insights to guide prevention and intervention strategies.

Materials and Methods: A retrospective analysis was conducted on data from 322 cancer patients diagnosed at a tertiary care hospital in Srinagar. The study assessed demographic details, cancer types and gender distribution, using statistical analysis to identify trends.

Results: Lung cancer was the most common (17.3%), followed by stomach (11.1%) and gallbladder cancers (8.6%). Gender analysis showed lung cancer was predominantly male (76.7%), while gallbladder (60.7%) and breast cancers (96%) were more common in females. Female-specific cancers, including ovarian, endometrial and cervical cancers, constituted 7% of cases, while prostate cancer accounted for 4.6% of male cases. Rural populations had higher rates of gastrointestinal cancers, reflecting limited access to healthcare.

Conclusion: This study reveals demographic and gender disparities in cancer distribution in Kashmir, underlining the need for gender-sensitive health policies, improved cancer awareness and enhanced screening programs, especially for rural populations. Further research should investigate environmental and lifestyle factors influencing these patterns.

Keywords: Gallbladder Neoplasms, Lung Neoplasms, Incidence, Retrospective Studies, Rural Population, Public Health

Dr. I. Arockiamary

Faculty of Health Sciences, Villa College, Maldives. Email: aishath.mala@villacollege.edu.mv

ABSTRACT

Objectives: Patients newly undergoing radiation therapy face many challenges in everyday life that decrease their quality of life, for example, the burden of radiation therapy induced side effects. Everyone has his/her own way of dealing with these challenges, often using non-pharmacological or self-care management and coping strategies. The study aimed at evaluating the effectiveness of comprehensive nursing care package on self-care practice, coping abilities of patients who are newly subjected to radiation therapy among cancer patients.

Materials and Methods: Single-centre randomised controlled trial study was conducted among 100 head-and-neck cancer patients (50 observed, followed by 50 subjected to Comprehensive Nursing care package). Self-care assessment and cancer coping questionnaire were used to assess the self-care practice, coping abilities respectively. Comprehensive nursing care package was provided to the intervention arm twice a week during radiation therapy along with the standard care; the control arm received only standard care. Data were collected before commencing radiotherapy and post-test assessments were carried out at the end of radiotherapy treatment, and at 4 months after completion of radiotherapy.

Results and Conclusion: Results revealed a statistically significant improvement with comprehensive nursing care package in the intervention arm such as self-care practice and coping abilities among cancer patients who are newly subjected to radiotherapy.

Keywords: Comprehensive nursing care package, Coping abilities, Radiation therapy, Self-care practice

Dr. Rohit Lahori

Government Hospital, Gandhinagar, Jammu, India. Email: sabari9226@gmail.com

ABSTRACT

Introduction: Lower back pain (LBP) is one of the most common presenting complaints in adult patients. One of these infrequent causes, cluneal neuralgia, is associated with damage or entrapment of the cluneal nerves. Cluneal neuralgia due to superior cluneal nerve entrapment presents in the form of low back pain, associated with tenderness at the rim of the iliac crest, burning sensation, paraesthesia and numbness over the buttocks below the iliac crest. The pain is often exacerbated by moving the lumbar region, movements such as rotating, bending, extending, prolonged sitting or walking.

Case Description:

• The patient is a 55-year-old adult female, presented to pain clinic in Government Hospital Gandhinagar with chronic right-sided low back pain.

• Two years before, magnetic resonance imaging (MRI) was done showing minimal prolapse of intervertebral disc (PIVD) over L4–L5 and L5–S1. She underwent caudal epidural injection for PIVD in Delhi but had no relief in pain.

• Underwent total abdominal hysterectomy with bilateral salpingooophorectomy under general anaesthesia for uterine fibroids with abnormal uterine bleeding in 2008 in Jammu. 3–4 months after surgery, she developed LBP.

• Physical examination was normal, except for localised tenderness over right paravertebral lumbosacral region extending from L3 o S1 level and over iliac crest and PSIS and FABER test over right side was positive.

• She had a pain score of numeric pain rating scale (NRS) 7/10.

• Diagnosis was made by exclusion of lesser-known causes.

• Underwent diagnostic right sacroiliac joint MIPSI with local anaesthetic (0.5% Lignocaine with 40 mg Kenacort) – No immediate pain relief achieved and followed up after 4 weeks.

• She was provisionally diagnosed as L4–L5 right facetal arthropathy with minimal changes in MRI.

• Underwent diagnostic block over right intra-articular facet joint of L3–L4 and L4–L5 with local anaesthetic (0.5% Lignocaine with 2 0mg Kenacort at each space) – No immediate pain relief achieved and followed up after 4 weeks.

• Underwent diagnostic cluneal nerve MIPSI over medial and intermediate branches of superior cluneal nerve with local anaesthetic and steroid – 60–70% of pain relief achieved.

• Hence, she was finally diagnosed with superior cluneal neuralgia.

• Ultimately, underwent superior cluneal conventional radiofrequency neurotomy under local anaesthesia.

• Patient was kept under treatment of oral neuropathic agents and nonsteroidal anti-inflammatory drugs on SOS for 3 weeks.

• On follow-up 3 weeks after RFA, patient had significant pain relief and her NRS was 2/10.

Conclusion: The aetiology of LBP should be investigated for possible cluneal neuralgia. Pain specialists and clinicians evaluating LBP should consider cluneal neuralgia before treatment of these patients to prevent misdiagnoses. Subsequently, conservative and surgical options should be evaluated on an individual level and based on symptom severity to best treat patients suffering from LBP related to cluneal neuralgia.

Keywords: Lower backache, Cluneal nerve, Cluneal nerve entrapment, Superior Cluneal nerve entrapment, Maigne syndrome, Radio-frequency ablation, exclusion diagnosis

Wah Wah Myint Zu

Karuna Compassionate Care Center, Yangon, Myanmar Email: drshoonmyaaye89@gmail.com

ABSTRACT

Objectives: Superior vena cava obstruction (SVCO) is a severe complication often associated with lung cancer, significantly impacting patients’ quality of life. Palliative radiotherapy (RT) is frequently used to alleviate symptoms. This study evaluates the short-term effectiveness of palliative RT in improving patient-reported outcomes (PROs) in SVCO patients using the Myanmar Integrated Palliative Care Outcome Scale (IPOS).

Materials and Methods: The study included patients with lung cancer-related SVCO treated at Karuna Oncology Clinic from November 2023 to November 2024. Patients with SVCO from other causes and those who did not consent were excluded from the study. Patients self-reported their physical, emotional, communication and practical symptoms using the Myanmar IPOS before RT as a baseline and 1 month after RT. All patients received 2D or 3D external beam radiotherapy (20 Gy in 5 fractions). Data were analysed using the Statistical Package for the Social Sciences version 16.0.

Results: The study comprised 25 patients with a mean age of 59.6 years, 64% male and 36% female. Most had completed secondary education (32%), and 20% were graduates. The most common physical symptoms were shortness of breath (34.4%), poor mobility (24.4%) and neck and arm swelling (22%). Palliative RT significantly reduced physical, communication, practical and emotional symptoms, as well as the total IPOS score, with mean differences of 9.32 (95% confidence interval [CI]: 8.62–10.02), 3.88 (95% CI: 3.36– 4.40), 4.36 (95% CI: 3.40–5.32) and 4.80 (95% CI: 4.46–5.14), respectively (P < 0.001).

Conclusion: Palliative RT significantly improves PROs in patients with SVCO due to lung cancer. Future research should involve larger sample sizes, longer follow-up periods and control groups to further validate these findings and optimise treatment strategies.

Keywords: Patient Reported Outcomes, Palliative Radiotherapy, Superior Vena Cava Obstruction

Dr. Samarjit Dey, Sunit Gupta, Joshna Chatada, V. Pushpa

All India Institute of Medical Sciences, Mangalagiri, Andhra Pradesh, India. Email: yashaswinisyashu@gmail.com

ABSTRACT

Palliative care focuses on improving the quality of life for both patients and their caregivers, addressing symptoms and unmet needs. While most research has concentrated on the patients, limited attention has been given to caregivers, particularly regarding the risk factors that can lead to caregiver burden and burnout. This poster aims to explore the responsibilities of palliative caregivers, the stressors they face and strategies to mitigate caregiver burden. Caregivers play a crucial role in supporting palliative patients, yet this responsibility often takes a toll on their mental and physical health. Burnout can arise from prolonged stress, emotional exhaustion and the demands of caregiving. This poster highlights the impact of caregiver stress, effective ways to prevent burnout and practical coping strategies for caregivers. In addition, the role of nurses in alleviating caregiver stress is emphasised. Home visits and direct support from nurses have proven effective in reducing caregiver depression and addressing specific challenges faced by families. By offering guidance and emotional support, nurses can significantly ease the burden on caregivers, fostering better outcomes for both patients and their families. This poster aims to raise awareness about the challenges faced by palliative caregivers and advocates for a more inclusive palliative care system. By addressing the needs of caregivers, the system can enhance their well-being, ensuring holistic care that benefits both patients and their support networks.

Keywords: Palliative Care, Coping Skills, Emotional Exhaustion, Depression, House Calls, Burnout, Psychological, Attention, Risk Factors

G. Kumaresan, J. Ranjith, M. Kousalya, Aleena Xavier, R. Lilly, R. Thirumal Prashanth

Cancer Institute (WIA), Adyar, Chennai, Tamil Nadu, India. Email: vinutha.suresh@gmail.com

ABSTRACT

Objectives: Palliative care services are provided at various settings to address the complex needs of patients with cancer. Periodical auditing is crucial for enhancing palliative care services. The purpose of this retrospective audit is to analyse the trends and patterns of the palliative care services provided at a not-for-profit tertiary level cancer centre from low- and middle-income countries by an integrated palliative care team and to report the results.

Materials and Methods: Data are collated for the financial year 23–24. This retrospective audit is reported using analysis of patients’ palliative care services data. The source of data is from patient information sheets, Google Forms where data are stored digitally, data analysis done using spreadsheets.

Results: Over 15,000 patient visits were analysed, with 55% of consultations in outpatient settings, 25% in inpatient settings, 4% in home care and 16% through teleconsultations. Slightly over half the patients were male reflecting equitable services across genders. Only 1% patients provided feedback highlighting the need for structured feedback mechanism. Three nurses managed 900 procedures, emphasising the need for additional nursing staff. Absence of data entry for screening outcomes from assessment tools which emphasise the need for dedicated data entry personnel. Tablet Morphine is the dominating analgesic with 99% usage. The audit shows significant geriatric, and paediatric representation with majority services provided to economically disadvantaged patients. Services are availed primarily by patients within Tamil Nadu with limited reach beyond the state of the centre’s location.

Conclusion: This retrospective audit reinforced best practices and identified gaps. Involving team members in data management and analysis may give self-evaluation and a reflection of the services. Periodical audits in service delivery should be integrated into the palliative care system for quality improvement.

Keywords: Palliative care audit, Tertiary cancer hospital, Integrated palliative care team, Palliative care service evaluation, Low- and middle-income countries (LMIC), Retrospective audit

Dr. V. V. Meenakshi, Dr. Thendral Edwin

Cancer Institute (WIA) Adyar, Chennai, Tamil Nadu, India. Email: navas09090@gmail.com

ABSTRACT

Objectives: The emergency room (ER) is a critical contact point for cancer patients. Hospital visits for patient’s no longer on cancer-directed therapy cause undue strain on caregivers and the healthcare system. Analysing the reasons for these visits can help identify methods to reduce them.

Materials and Methods: A retrospective analysis of adult patients (age ≥18 years) registered under palliative care (PC) who visited ER between 01 July 2023 and 30 September 2023 at a tertiary cancer centre. Descriptive statistics was used for analysis.

Results: Among 400 ER visits, 359 visits were analysed, of which 53(14.76 %) visits were made by 42 patients not on any anti-cancer treatment. Gastrointestinal cancers (28.3%) formed the majority followed by urogenital (24.5%) and breast cancer (17%). Key reasons for ER visits were dyspnoea (19.23%), pain (15.38), fever (17.30), blood transfusion (9.61%) and vomiting (7.6%). A fourth of these patients died within 2 weeks, and 73.3% had died within 3 months of their ER visit. Only 11 patients were residents of the same city while the rest had travelled from adjoining districts. There was no documentation of goals of care discussion by the PC team in 41 out of the 42 patients not on anti-cancer therapy.

Conclusion: A significant proportion of patients not receiving anti-cancer therapy, who visited the ER are at high risk for 90-day mortality. Patients travelled long distances to receive healthcare indicating gaps in access to primary PC. Lack of goals of care discussion by the palliative care team may have influenced the family’s decision to come to ER.

Keywords: Emergency room, Best supportive care, Terminal care, Goals of care, Palliative, Community based palliative care, Tertiary cancer centre, Retrospective study

Dr. Anjum Khan S. Joad, Dr. Minhaj Akhter, Dr. Anita Bansal

Bhagwan Mahaveer Cancer Hospital and Research Center, Jaipur, Rajasthan, India

Email: abhi.98108@gmail.com

ABSTRACT

Objectives: Hypercalcemia is a recognised metabolic oncological emergency and a marker of poor prognosis in advanced cancer. It is critical to understand its prognostic implications to guide clinical decision-making and end-of-life care planning. European literature suggests 30 days survival in hypercalcemia, but there is limited evidence for it in India. To evaluate the prognostic significance of hypercalcemia in patients with cancer.

Materials and Methods: A prospective observational study was conducted involving cancer patients with hypercalcemia who were admitted to BMCHRC between 1 April 2024 and 30 October 2024. Survival outcomes were analysed on follow-up and by ePrognosis Tool.

Results: Among the 38 patients studied, hypercalcemia was associated with a median survival of 28 days. Higher serum calcium was directly related to delirium and shorter survival than PPS. This highlights hypercalcemia as a marker of advanced disease and poor prognosis, reflecting the limited survival expectancy despite medical intervention.

Conclusion: Hypercalcemia in cancer patients is a significant prognostic marker, indicating advanced disease and poor survival outcomes. This small sample size showed that in presence of hypercalcemia ePrognosis Tool is less accurate. Therefore, its presence should prompt urgent consideration of palliative care plan and realistic communication regarding prognosis with patients and families.

Keywords: Prognosis, Calcium, Palliative Care, Hypercalcemia, Follow-Up Studies

Ms. Indu Thakur¹, Dr. Aditya Mahiswar¹, Dr. Megha Pruthi²

¹Department of Pain and Palliative care, Fortis Memorial Research Institute, ²Department of Pain and Palliative Medicine, Artemis Hospital, Gurugram, Haryana, India.

Email: ishut1995@gmail.com

ABSTRACT

Objectives: End-of-life care (EOLC) is a patient-centred medical, emotional, spiritual and practical care provided at the final stage of life. Providers who care for international patients face multiple ethical dilemmas.

Materials and Methods: We are presenting a case of a 54-year-old international patient suffering from relapsed refractory AML with hepatitis B. He was accompanied by his brother only. He developed liver abscess and was admitted to the intensive care unit. A palliative care reference was done. He wished to have a conversation with his family members. We arranged a virtual consultation with his wife and children. After the call, the patient and his brother were happy. After his demise, the brother conveyed thanks from the family and invited us to the funeral.

Conclusion: EOLC of international patient involves several sensitive and practical considerations including medical, legal, cultural and logistic factors. Despite of all these factors, the EOLC of an international patient can be handled with dignity and respect.

Keywords: Palliative Care, Respect, Spouses, Siblings, Terminal Care, Intensive Care Units, Hepatitis B

Dr. Praveen Kumar Kodisharapu, Dr. Praneeth Suvvari, Dr. Basanth Kumar Rayani

Basavatarakam Indo American Cancer Hospital and Research Institute, Hyderabad, Telangana, India.

Email: sharunjohn6gmail.com

ABSTRACT

Objectives: Managing moderate pain in lung cancer patients is essential for improving their quality of life. Fixed-dose combinations of tramadol/ acetaminophen (TP) are commonly used, but codeine/acetaminophen (CP) may offer additional benefits. This study compares the efficacy, side effect profiles and potential improvements in cough control, sleep and anxiety management of CP versus TP in moderate cancer pain management.

Materials and Methods: This randomised and double-blind study was conducted at a tertiary cancer institute in Hyderabad. Lung cancer patients (≥18 years) with a pain score of ≤6 were randomly assigned to Group A (CP 30 mg/650 mg) or Group B (TP 37.5 mg/325 mg). Pain relief was assessed on days 1, 7 and 14 using a Likert scale. Side effects, drug compliance, pill burden and therapeutic benefits such as cough improvement were evaluated.

Results: Thirty-six patients participated (Group A: 19 and Group B: 16). Baseline pain scores were comparable (Group A: 4.93, Group B: 5.09, P = 0.606). Both groups experienced significant pain reduction over time with no statistical differences (p &gt; 0.05). Side effects such as constipation and dizziness were similar (p &gt; 0.05). In addition, some CP patients reported improved sleep, reduced anxiety and better cough control.

Conclusion: Both combinations effectively managed moderate cancer pain with comparable efficacy and tolerability. CP’s additional benefits, including improved sleep, reduced anxiety and cough suppression, warrant further study. Both options offer flexibility for clinical opioid selection in lung cancer care.

Keywords: Tramadol, Codeine, Cancer lung, Pain

Gaurav Chanana, Priya Vijayan, Tauseef Ahmad

Max Super Specialty Hospital, Saket, New Delhi, India Email: poojadutta344@gmail.com

ABSTRACT

Tardive dyskinesia (TD) is a non-goal-directed, repetitive and involuntary movement disorder, commonly associated with prolonged use of neuroleptics and similar medications. We report the case of a patient with metastatic high-grade serous ovarian carcinoma who developed distressing, involuntary and repetitive movements of the tongue. These movements significantly impacted both the patient and her family during her final days. Given the poor prognosis and limited life expectancy, the management approach focused on discontinuing potentially interacting medications and initiating a benzodiazepine, which can both induce and treat TD. In palliative and comfort care settings, patients with serious illnesses often receive multiple pharmacological agents, including neuroleptics for managing symptoms such as delirium, nausea and vomiting. It is crucial to monitor drug interactions and potential side effects, such as TD, to ensure optimal symptom relief and quality of life in this population.

Keywords: Dopamine, Extrapyramidal symptoms, Haloperidol, Neuroleptics, Tardive dyskinesia

Madhu Juneja, Priya Vijayan, Gaurav Chanana, Tauseef Ahmad, Pooja Dutta

Max Super Speciality Hospital, Saket, New Delhi, India. Email: juneja.madhu@gmail.com

ABSTRACT

Objectives: Family meetings play a pivotal role in ensuring continuity of care for cancer patients, particularly in the n Indian context, where family and informal caregivers are central to patient support. The growing population of cancer survivors has led to an increased demand for caregivers, whose physical and mental health outcomes are often interlinked with those of the patients they support. Caregiving in cancer has distinct challenges compared to other chronic health conditions, underscoring the need for focused attention on their experiences and roles. To conduct a retrospective analysis of family meeting records to identify current trends in caregiving and explore the role of caregivers in palliative care.

Materials and Methods: A comprehensive review of family meeting records conducted by the Palliative Care team over the past year was undertaken. Data were collected and analysed to understand patient demographics, disease profiles, caregiver characteristics (gender, relationship to the patient) and referral patterns.

Results: The analysis included data from approximately 150 patients. Key findings included: Patient demographics: gender, age and disease type. Caregiver profiles: gender, relationship to the patient and involvement in care. Referral patterns: insights into the sources and pathways of palliative care referrals. These trends highlight the critical role caregiver’s, play and provide a foundation for future research.

Conclusion: Family meetings are a cornerstone of palliative care, offering a structured forum to address critical issues such as disease prognosis, resource navigation, caregiver burden and family dynamics. While this study was a retrospective analysis, it underscores the importance of family meetings in understanding and addressing the multifaceted challenges faced by caregivers and families. Insights from such meetings can inform strategies to enhance support for caregivers, ultimately improving the quality of care for patients.

Keywords: Cancer care, Caregivers, Caring, Family meetings, Palliative care

Assam Cancer Care Foundation, Lakhimpur, Assam, India.

Email: suryaoncology@gmail.com

ABSTRACT

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

Materials and Methods: We have analysed the resorting to palliative care teams for 17 children included in a phase II clinical trial as pilot project before going for a full-fledged study. Paediatric palliative care team had visited individual patients to evaluate their needs and do the needful as appropriate.

Results: It was found that 11 patients need additional support from the paediatric palliative care team and would benefit from a long-term care. The team had taken care of the symptomatic management, and this had reduced the workload of the trial investigator to a great extent.

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

Keywords: Pediatric palliative approach, Early phase clinical trial

Dr. Anu, Ms. Archana, Ms. Merina, Ms. Bini, Ms. Bigi, Ms. Jithu

General Hospital, Ernakulam, Kerala, India. Email: dijoneethu@gmail.com

ABSTRACT

Objectives: Terminally-ill individuals are vulnerable to chronic wounds, complicated by malnutrition, poor circulation and comorbidities. Palliative wound care focuses on symptom alleviation, minimising discomfort and improving quality of life. Debridement, metronidazole and multidisciplinary care alleviate pain, odour and exudate. Psychological support is crucial, as delayed healing impacts self-esteem and mental well-being. A multidisciplinary team, including podiatrists, wound specialists, physiotherapists and psychologists, provides coordinated care. This approach improves outcomes for end-of-life patients with chronic wounds, prioritising comfort and dignity.

Materials and Methods: This prospective interventional study was conducted from January to May 2024 at General Hospital Ernakulam’s Pain and Palliative Department. Fifty-one terminally ill patients with chronic non-healing wounds received comprehensive care, including daily dressing with antimicrobials, cauterisation, correction of hypoproteinemia/anaemia, excision/debridement, physiotherapy and health education.

Results: Of the 51 patients (28 males and 23 females) with a mean age of 61, 67% were between 50–80 years old. Common medical comorbidities included diabetes (25%), cerebrovascular accident (16%) and chronic kidney disease (10%). Bed sores (43%) and diabetic foot (20%) were prevalent wound types. Excluding nine patients who expired and 2 non-responsive, 39 patients showed significant improvements: 18 (46%) achieved complete healing, 16 (41%) had <50% wound size reduction and 5 (13%) had >50% reduction.

Conclusion: This study demonstrates the effectiveness of comprehensive wound care in achieving significant improvements in patient outcomes and quality of life. The program resulted in a 46% complete healing rate within 3 months, enhancing patients’ social, financial, psychological, spiritual and physical well-being.

Keywords: Palliative wound care, Chronic wound, Multidisciplinary care, Quality of life, Evidence based study

Dr. George Tukalan, Dr. Geetha Vijayaraghavan, Dr. P. G. Annie, Dr. Smitha Menon, Dr. V. G. Aneesh, Sn. N. P. Vipin Paul, Geena Varghese, Dr. Merrin Varghese

Arike Palliative Care, Ernakulam, Kerala, India. Email: athulmanuel@gmail.com

ABSTRACT

Background: Arike Palliative Care exemplifies community-based healthcare, committed to Universal Health Coverage to ensure accessible, essential health services without financial burden. This abstract highlights Arike’s model as a Non-Governmental Organisation since October 2019 by delivering sustainable palliative care services using hub and spoke model, cross-subsidisation and technology innovation.

Materials and Methods: 24/7 in Home Care: Round-the-clock medical, nursing, emergency, end-of-life, psychosocial support, physiotherapy and telemedicine support. Hub and Spoke Model: Adapts a hub and spoke model to collaborate with mid-level hospitals to create dedicated palliative care units.

Cross-Subsidisation: For those who can afford, Arike offers the opportunity to contribute towards the services they receive, while others are supported through Corporate Social Responsibility or community funding. Community Partnership: Arike coordinates a support system that handholds the community to care for one another. The monthly social audits involve volunteers and staff. Regular sensitisation programs, volunteer training and basic nursing skills to empower caregivers are provided.

Eco-Friendly Vehicles: Funded electric scooters and cars reduce fuel costs and promote environmental sustainability.

Technology Integration: Arike contributes toward development of the CARE platform – Open Healthcare Network to support real-time updates and telehealth, with plans to expand to other palliative care centres.

Results: Extending services to 24/7 increased patient registrations; technology improved care coordination and monitoring. The resource-pooling concept allowed equitable access across economic backgrounds and sustainable service delivery.

Conclusion: The Arike model presents an adaptable and scalable approach for community-based healthcare that ensures equitable access to palliative care for everyone, regardless of socio-economic status.

Keywords: Palliative care, Technology, EMR, CARE software, Palliative care grid, Telemedicine, Open Healthcare Network, Decentralised

Rajesh Mahajan

Government Medical College, Jammu, Jammu and Kashmir, India. Email: drmahajanr@gmail.com

ABSTRACT

Background: Mycosis fungoides, the most common subtype of cutaneous T-cell lymphoma, primarily affects the skin, leading to patches, plaques and skin tumours. These manifestations are often associated with profound pain and pruritus, which can be resistant to standard treatments. This report highlights a case of refractory pruritus in a patient with mycosis fungoides that were successfully managed with oral cannabinoids.

Case Report: A 48-year-old male diagnosed with mycosis fungoides presented with erythematous, hyperpigmented, crusted plaques of varying sizes and shapes distributed bilaterally over his arms, forearms, shoulders and chest. He reported severe pruritus and pain with a visual analogue scale score of 8/10. Previous treatments, including topical and systemic therapies such as emollients, corticosteroids, antihistamines, gabapentinoids, nortriptyline, mirtazapine, methadone and infusions of lignocaine and ketamine, failed to provide adequate relief. The patient was initiated on a balanced oral cannabinoid capsule formulation containing 5 mg each of cannabidiol and delta-9-tetrahydrocannabinol once daily. The dose was gradually increased to twice daily. Following this treatment, his pruritus score improved significantly from 7/10 to 3/10. Although he experienced mild sedation initially, tolerance to this side effect developed quickly.

Results: This case demonstrates that cannabinoids may be a safe and effective option for managing refractory pruritus associated with cutaneous T-cell lymphoma.

Keywords: Cannabinoids, Pruritis, Hodgkin lymphoma

Ms. Nileema Sharad Shingade, Ms. Parveen, Ms. Anu Kishor, Ms. Surabhi Mondal, Aparna, K. J. Lijumol

All India Institute of Medical Sciences, Rishikesh, New Delhi, India Email: nileema_db@yahoo.co.in

ABSTRACT

Introduction: Radiation therapy is one of the primary treatment modalities either alone or as adjuvant or neoadjuvant with surgery for cancer patients. Ionising radiation work directly by damaging the DNA or indirectly by generating free radicals which in turn damage the cellular component along with DNA and ultimately leading to cell apoptosis. During the process of cellular damage cells, either goes into direct apoptosis or after a limited number of cell divisions. This delayed apoptosis of certain cells also explains the latency of acute symptoms. Acute radiation usually damages the rapidly proliferating cells such as epithelial cells and gastrointestinal mucosa, while late complications due to radiation happens in tissues with slow turnover – such as brain, kidney, liver and muscles. These side effects not only diminish the patient&#39;s quality of life but also hinder effective treatment. Recognising side effects/symptoms aids in the prompt management of symptoms, leading to more effective treatment. The objective of this study is to identify the acute and consequential side effects of the radiation therapy and their impact on quality of life of the patient.

Methodology: Observational research design has been adopted to collect the data from adult cancer patients without any additional co-morbidity and getting first time radiation therapy for any intent (curative or palliative). Tools used to collect data are self-developed socio-demographic and symptom assessment inventory (validity was assessed for these tools by seeking opinion from two medical and three nursing experts), while quality of life of the patient was assessed with standardised tools EORTC QLQ-C30 (version 3). With convenient sampling technique all the patients coming for any day of external beam radiation treatment has been provided with the self-administering tools after their due consent.

Results: The mean age of subjects was 51.69 years, with maximum number of female (51.3%) participants, and majority of them have head-and-neck carcinoma (39.2%) followed by breast (25.7%), genitourinary (16.2%) and other miscellaneous cancers. Maximum patient received it as an adjuvant (73.7%) to surgery, followed by primary treatment (21.1%) and remaining as palliative and neoadjuvant. It has curative (96.1%) intent, while 3.09% time, it was done with palliative intent. Majority of time it was low-dose radiation. About 97.4% therapy followed by very high-dose stereotactic 2.6% times. Head and amp; neck (52%), chest (24%), abdominal-pelvis (20%) and regional site (4%) were the common site for irradiation. Maximum patients have good hygiene (51.9%), and interestingly, no patient was found to have very poor hygiene. Symptoms present at the start of treatment were compared with symptoms present on the statistical calculated mean day of data collection, that is 10.10 (±8.74) using paired t-test. Weight loss, fatigue, hair loss, insomnia, pain, anorexia, dyspnoea, constipation, diarrhoea, skin changes, headache, vomiting, blurry vision, swelling tenderness, dysphagia, cough, mouth problems, taste changes, sexual problems and urinary tract problems were found to increased significantly after start of treatment at p&lt;0.05 level. Interestingly, diagnosis is found to be strongly correlated with area of RT on assessing with Pearson’s correlation at a level of p&lt;0.01.

Discussion: Radiation therapy has more of regional side effects rather than global. More of physiological side effects were found to be statistically significant rather than psychological side effects. With increase in number of days of exposure with radiation therapy, intensity of side effects also increases. It is obvious that instant clinical results after the radiation therapy in adult patients is most unlikely occurrence, as patients starts developing multitude of physiological and psychological symptoms after the inception of treatment.

Keywords: Patient reported acute side effects of radiation therapy, Quality of life, Radiation therapy

Dr. Amit Kanti Sarkar, Prof. (Dr.) Kunal Kanti Majumdar

General Secretary, Oncolink, Nadia, West Bengal, India Email: stbdimtr111@gmail.com

ABSTRACT

Objectives: Following World Health Assembly resolution, Government of India launched National Programme for Palliative care (NPPC) for continuum of physical, psychosocial, spiritual care of those suffering from life-threatening and life-limiting illnesses and their caregivers. As a process of implementation, capacity building with nationwide cascade model training has been started with medical officers (M.O.) at district levels. To assess training need, efficacy and necessity of retraining.

Materials and Methods: A cross-sectional study was conducted from February to April, 2024 among M.O.s of three randomly selected districts of West Bengal on pilot basis. Through state and district level authorities, out of 215 M.O.s, 151 from 43 primary and community health centres were selected randomly after finite population correction. A semi-structured and validated questionnaire (Cronbach’s alpha >0.8) with maximum score of 100 was used before and after 4 days trainings by principal investigator (accredited trainer) for pre- and post-training assessment. Institutional Ethical clearance and consent from participants were obtained.

Results: Age of the participants was 41 ± 5 years (mean ± standard deviation [SD]), 92 (60.9%) were male and 73 (48.3%) had work experience of ≥5 years. Mean ± SD of pre- and post-training scores were 23 ± 5.1 and 69 ± 7.7, respectively. Paired t-test showed significant difference (P < 0.001) between these two scores. Univariate general linear model with pre-training score as baseline showed significant ‘F’ value indicating unmet need for training. Huge residual gap (>30%) even after 4-days of training indicates need for recurrent re-training.

Conclusion: For smooth running of NPPC, periodic training on palliative care is an exigency and need of hour.

Keywords: palliative care, end-of-life care, capacity building, questionnaire

Ajitha Katta

University of Hyderabad, Hyderabad, India Email: mousmikirtania15@gmail.com

ABSTRACT

Objectives: The Integrated Palliative Care Outcome Scale (IPOS) is a 17-item multi-dimensional tool for physical and psycho-social symptoms. It is widely accepted among patients with advanced illnesses and is available in English. We aimed to assess the symptom burden and severity experienced by cancer patients admitted to an in-patient (IP) palliative care service in Hyderabad.

Materials and Methods: We prospectively evaluated the cancer patients at the IP ward in MNJ Cancer Institute using the IPOS (translated to Telugu/Hindi) on admission and discharge. The severity of symptoms was rated based on a Likert scale (0 [best] – 4 [worst] points). A score ≥2 was considered clinically relevant for each item. The worsening symptom burden was defined as the total IPOS score being poorer at discharge than on admission.

Results: Out of 240 patients (mean age: 68.5 ± 22.0 years, male: 173 patients), the median (interquartile range [IQR]) total IPOS score on admission was 23 (15, 27). Total IPOS score reduced significantly on discharge (median [IQR] = 18 [9, 24]; P < 0.001). All four emotional symptoms and practical issues were clinically relevant during discharge; none of the physical symptoms were nominated. Worsening symptom burden was noted in 25% of the patients due to poor prognosis. Pain and reduced appetite were severe (77%) on admission.

Conclusion: We identified that the hospitalised cancer patients had multidimensional symptom burden which can be studied using IPOS. The emotional symptoms and practical issues were prevalent at discharge, manifesting the need for holistic palliative care.

Keywords: Cancer, India, Integrated Palliative Care Outcome Scale (IPOS), Palliative care, Symptom burden

Pallavi Singh¹, Jayita Deodhar²

¹MPMMCC/HBCH, Unit of Tata Memorial Centre Mumbai, Varanasi, Uttar Pradesh, India, ²Tata Memorial Centre, Mumbai, Maharashtra, India.

Email: drpallavisgautam@gmail.com

ABSTRACT

Objectives: Head-and-neck cancer (HNC) is a major health issue in India, with advanced-stage patients often experiencing significant pain, emotional distress and body image concerns. This study aimed to evaluate symptom burden, pain profile and quality of life (QOL) among advanced HNC patients newly referred to a specialist palliative care (SPC) setting in a tertiary cancer centre in India.

Materials and Methods: A cross-sectional observational study enrolled HNC patients aged 18 and above, referred to the SPC clinic, who could provide consent and complete questionnaires. Descriptive measures included patient characteristics, disease stage, treatment variables and QOL. Symptom burden and QOL were assessed using ESAS-r and EORTC QLQ-C15-PAL tools. Statistical analyses were conducted with the Statistical Package for the Social Sciences IBM Corp.

Results and Conclusion: The study included 300 patients, 84% male, with a median age of 48 years, with males at 47 and females at 56. The oral cavity was the most common cancer site (76.6%), primarily buccal mucosa cancer. Most patients were in stage III (18%) or IV (69%). Pain was the most common symptom, with median scores of 6 (interquartile range [IQR] 5,7), followed by fatigue with a median score of 3 (IQR 2,4). Neuropathic pain (NPP) affected 70.3% of patients, and 84% with NPP had depression on Patient Depression Questionnaire-9 scale. Emotional QOL scores were notably high, with a median of 83.3. Pain being the primary concern in our study, including moderate prevalence. All patients who had neuropathic pain also had nociceptive pain. Further imperative research is needed to address these challenges faced by HNC patients, for better QOL.

Keywords: Symptom Burden, Palliative Care, Body Image, Prevalence, Neuralgia, Mouth, Head and Neck Neoplasms, Psychological Distress, Nociceptive Pain, Fatigue

Dr. Srikanth Srinivasan, Dr. Manoj Kamal, Dr. Pankaj Bhardwaj, Dr. K. H. Naveen

All India Institute of Medical Sciences Jodhpur, Jodhpur, Rajasthan, India Email: jethwanijyoti94@gmail.com

ABSTRACT

Objectives: Palliative care aims to enhance the quality of life for patients facing life-threatening illnesses by addressing their physical, psychosocial and spiritual concerns. The Government of India through its National Program for Palliative Care (NPPC) aims to provide accessible and affordable palliative care at all levels of health care. The present study was carried out to know the prevailing status and implementation challenges of NPPC in Jodhpur district, Rajasthan.

Materials and Methods: An Exploratory Qualitative Study with Case Study approach design was applied in data collection. Thirteen in-depth interviews were conducted among purposively selected stakeholders associated with NPPC. They included State Palliative Care Nodal Officer, District NCD Nodal Officer, CMHO of Jodhpur, State drug Controller, six Government/ Private Practitioners and three Patients receiving palliative care services. Four in-depth interviews and four focus group discussions were conducted among MOs and Accredited Social Health Activists/Auxiliary Nurse Midwives from randomly selected PHC/CHCs, respectively. Thematic analysis was employed for data analysis.

Results: In the tertiary care hospital, outpatient department (OPD) and home-based services were operational. About 400 patients (old and new) were utilising these services in a month. In another tertiary care hospital, OPD services have been recently started. Patients receiving home-based care were satisfied with the services. Challenges identified include lack of dedicated budget, workforce and IEC materials, expansion of services at field level might lead to overburdening of existing staff and untrained health care staff exhibiting less knowledge on palliative care.

Conclusion: Existing palliative care facilities are catering to a small segment of needy patients in Jodhpur district. There is a need for capacity building for staff in all health facilities in Jodhpur district for effective implementation of NPPC.

Keywords: Students, Nursing education, Policy, Undergraduate medical teaching

Nurijam T. Espares

Zamboanga City Medical Center, Zamboanga City, Philippines. Email: everjaji@gmail.com

ABSTRACT

Objectives: Family caregivers are essential to the care and support of adult cancer patients yet they often experience caregiver strain, anxiety and depression. Despite the psychological and emotional burden they endure, formal assessments of their mental health needs are seldom conducted. This study aimed to determine the prevalence of caregiver strain, anxiety and depression among family caregivers of adult cancer patients at a tertiary hospital in the Philippines.

Materials and Methods: This study involving 346 family caregivers used the Modified Caregiver Strain Index-Pilipino version to identify cases of caregiver strain, and the Hospital Anxiety and Depression Scale-Pilipino version to identify cases of anxiety and depression. Data were analysed using descriptive statistics.

Results: The prevalence of predisposition to strain and severe caregiver strain was 6.65% and 3.18%, respectively. The prevalence of anxiety was 32.66% and the prevalence of depression was 29.77%.

Conclusion: Although the majority of family caregivers did not experience significant caregiver strain, anxiety or depression, a notable proportion still reported symptoms. These findings highlight the need for screening and monitoring of family caregivers so that targeted mental health interventions and support can be given to improve their well-being and caregiving capacity.

Keywords: Caregiver strain, anxiety, depression, family caregivers, cancer

Megha, Sushma Bhatnagar, Anuja Pandit, Ashwani Kumar Mishra, Subhradip Karmakar, Pratap Sharan

All India Institute of Medical Sciences, New Delhi, India. Email: joyeetatalukdar@aiims.edu

ABSTRACT

Objectives: Depression is the most common mental health disorder among cancer patients. This study aims to explore the potential connection between depression and the immune system in palliative care cancer patients. It is hypothesised that psychological factors, such as depression, can influence the immune system’s response to cancer, potentially impacting treatment outcomes and disease progression.

Materials and Methods: Twenty plasma samples, divided into groups of eight with depression, eight palliative care patients with depression and four normal, were collected and stored at −80°C. The Olink^® Target 48 Human Cytokines panel, utilising PEA technology, was employed to quantify 45 inflammation-related protein biomarkers. A comprehensive quality control system, including internal and external controls, was implemented to ensure data accuracy. Data analysis was performed using Olink NPX Signature (v1.14.0), with statistical significance determined by P-value threshold of < 0.05.

Results: Based on the heat map and volcano plot analysis, the common cytokine profile between depressive patients and palliative care patients with depression included interleukin-6 (IL)-6. This pro-inflammatory cytokine is associated with chronic inflammation. In further proteome analysis, the common cytokines downregulated in both palliative care and depressive patients compared to normal controls were epidermal growth factor (EGF), IL-7 and IL-4. These cytokines are involved in critical biological processes such as tissue repair, immune function and regulation of immune responses.

Conclusion: The study revealed a common cytokine profile in depressive and palliative care patients with depression, characterised by elevated IL-6 and downregulated EGF, IL-7 and IL-4. These findings emphasise the importance of addressing psychological factors in cancer care to improve treatment outcomes and overall patient well-being. Further research is needed to explore the precise mechanisms and clinical significance of these cytokine alterations.

Keywords: Psycho-oncology, Inflammatory Cytokines, Immune profiling

Michelle Normen, Srinagesh Simha, Santosh K. Chaturvedi

Bangalore Hospice Trust- Karunashraya, Bengaluru, Karnataka, India. Email: seema.rao@karunashraya.org

ABSTRACT

Objectives: Spiritual care is an important dimension of palliative care, yet there is a lack of standardised, culturally relevant training programs in India. This 3-day spirituality workshop, developed and delivered by mental health and palliative care experts, aimed to enhance spiritual care competencies of palliative care providers. This report analyses the impact, acceptability and relevance of a 3-day spirituality workshop conducted at a hospice in India.

Materials and Methods: A total of 25 participants attended the workshop (16 counsellors/social workers, seven physicians and two PhD scholars). All participants completed a 10-item survey that evaluated participants’ knowledge of spirituality before and after the workshop. Participant feedback was collected through an open-ended questionnaire that evaluated engagement, relevance and satisfaction with the workshop. Normalised (Hake) learning gains were calculated, and paired t-test was used to evaluate the statistical significance.

Results: The mean age was 47; 60% were female; and 80% were working in palliative care. The mean pre-test score was 7; post-test score increased to 9.5, indicating absolute learning gain of 2.5. The relative learning gain of 83.3% and normalised learning gain of 0.83 highlight the training’s usefulness. Statistically significant improvements in absolute gain were observed (P < 0.05). In addition, 96% reported high satisfaction with the workshop, 84% found it highly relevant to their clinical practice and 98% reported the teaching methods as engaging.

Conclusion: The findings demonstrate the usefulness, acceptability and relevance of the 3-day spirituality workshop. Further research is needed to determine whether these learning gains translate to actual knowledge application.

Keywords: Spirituality, Palliative care, Healthcare providers, Reflective writing, Content analysis

Ximena García-Quintero¹, Gayatri Palat², Spandana Rayala², Camara Van Breemen³, Julia Downing⁴, Justin N. Baker⁵, Michael McNeil⁶

¹Department of Pain and Palliative Medicine, MNJ Institute of Oncology and RCC, Hyderabad, Telangana, India. ²Department of Pain and Palliative Medicine, MNJ Institute of Oncology and RCC, Hyderabad, Telangana, India. ³Two Worlds Cancer Collaboration Foundation, Kelowna, Canada, ⁴Canuck Place Children’s Hospice, Vancouver, Canada, ⁵Division of Quality of Life and Pediatric Palliative Care, Stanford University, Palo Alto, CA, USA, ⁶Department of Global Pediatric Medicine, St Jude Children’s Research Hospital, Memphis, Tennessee, USA

Email: megandoherty@hey.com

ABSTRACT

Objectives: More than 2 million children in South Asia could benefit from children’s palliative care (CPC) but <0.4% can access to this specialised service. To increase CPC capacity, healthcare professionals require leadership training. We describe the development and implementation of a leadership training program focused on supporting emerging healthcare leaders in this region.

Materials and Methods: National, regional and global leaders formed a leadership team to develop a year-long CPC Leadership Program. The curriculum was developed from a literature search and needs assessment with expert input. The program consisted of 14 monthly online sessions and two in-person workshops. Key training topics included essential leadership practices, project management, advocacy, stakeholder analysis, mentorship and emotional intelligence. The program also included an individual leadership change project, with ongoing individual mentorship from global experts.

Results: Twenty emerging healthcare leaders, including nurses, physicians, allied health professionals and health administrators from five South Asian countries, participated in the program. In-person workshops included interactive activities on developing an ‘elevator pitch’ and establishing an ‘Innovation Hub’ for donor engagement. Online sessions support ongoing leadership development. Program evaluation includes surveys and interviews with participants and narrative case studies of service development.

Conclusion: The Children’s Palliative Care Leadership Program is an innovative model to support system change through leadership development, mentoring emerging leaders to develop CPC innovations. The program aims to impact 150,000 children and families, advancing regional collaboration and new programs. Future efforts will evaluate program outcomes and refine the curriculum to meet the needs of stakeholders.

Keywords: Palliative care, Pediatric, Leadership, Professional Development

Krishna Sagar Sharma¹, Megan Doherty², Gayatri Palat³, Spandana Rayal³, Camara van Breemen⁴

¹BP Koirala Memorial Cancer Hospital, Bharatpur, Chitwan, Nepal, ²Paediatric Palliative Director-South Asia, Two Worlds Cancer Collaboration, Canada, ³MNJ institute of oncology and RCC, Hyderabad, Telangana, India, ⁴Sunflower Children’s Network, Two Worlds Cancer Collaboration, Canada, Canuck Place Children’s Hospice. Vancouver, Canada.

Email: roshanituitui2078@gmail.com

ABSTRACT

Objectives: There are 43,000 children in Nepal who require palliative care each year; however, access to children’s palliative care services is very limited, and most health workers have not been trained in this area. To increase capacity for children’s palliative care, health workers need training to be able to treat serious health-related suffering for children and their families.

Materials and Methods: Supported by regional and global children’s palliative care leaders, a national leadership team was formed to develop a national training package on children’s palliative care. The program curriculum was designed following a literature search, needs assessment and advocacy seminars with key stakeholder meetings including Ministry of Health officials, hospital directors, medical and nursing experts and representatives from professional organisations. Peer review of the training package was conducted by international palliative care experts.

Results: A national training package was developed following national guidelines. The package includes three training manuals (Reference, Participant and Trainer) and a train the trainer program. The package addresses learning needs related to core children’s palliative care: pain and symptom assessment and management, communication with children and caregivers, psychosocial support, navigating ethical issues, multidisciplinary team care, caring for adolescents, perinatal palliative care and end-of-life care.

Conclusion: A National Training Package for Children’s Palliative Care has been developed for doctors and nurses in Nepal. This package will support training at central and provincial hospitals, enhancing the care which health workers are able to deliver for children with serious illnesses, through the provision of palliative care.

Keywords: Palliative care, Training package, Nepal

Mithili Sherigar, Srinagesh Simha

Karunashraya Institute for Palliative Care Education and Research, Bengaluru, Karnataka, India.

Email: seema.rao@karunashraya.org

ABSTRACT

Objectives: Patients in palliative care experience significant psychiatric comorbidities often underrecognised and undertreated. This negatively impacts palliative care outcomes, with patients reporting higher symptom burden, greater functional impairment, lower quality-of-life and increased healthcare utilisation. Psychiatrists in interdisciplinary teams can contribute uniquely to the care these patients and their caregivers. This audit aims to analyse the characteristics of psychiatric referrals in an inpatient hospice.

Materials and Methods: Retrospective audit of medical records of inpatients referred for psychiatric consultation in the hospice was analysed from 1 January 2024 to 31 July 2024. Descriptive statistics were used to summarise data.

Results: Of the 595 patients, 20 (3.4%) were referred for psychiatric evaluation, indicating low referral rates. The mean age was 44 ± 11.3; 50% were male; 45% married and 55% belonged to lower-income group; with head-and-neck cancer being the predominant site. About 55% had past history of psychiatric illness; 55% had substance use disorder. Mean Distress Thermometer score was 6. Major psychiatric diagnoses were delirium (35%), depression (25%) and adjustment disorder (20%). About 30% of those referred had suicidal ideation; 50% expressed a desire for hastened death. Mean time from admission to referral was 92 days; from referral to death 25 days, with 50% lost to follow-up. Haloperidol, mirtazapine and midazolam were the commonly prescribed psychotropics.

Conclusion: This audit highlights the low referral rates to psychiatry and a pattern of late referrals, suggesting gaps in timely mental health support, which has the potential to impact quality of life and death adversely.

Keywords: Psychiatry, Hospice, Mental health, End of life care

Mayank Gupta, Ankita Kankaria

All India Institute of Medical Sciences, Bathinda, Punjab, India. Email: drm_gupta@yahoo.co.in

ABSTRACT

Objectives: Timely access to palliative care (PC) in cancer improves symptom management and improves quality of life and survival. Community-based PC models are proven to a be cost effective but are limited to southern part of India. The aim is to develop a Comprehensive Community-Based Coordinated PC Model for cancer patients a rural block in a north Indian district.

Materials and Methods: A concurrent mixed method study was conducted in rural block of the Bathinda district in Punjab. The study participants included different stakeholders include NP NCD programme officers, Medical officers of the block, Accredited Social Health Activists, Auxiliary Nurse Midwives, Community Health Officers, village sarpanch, cancer patients and their caregivers. A Consolidate Framework of Implementation Research framework (CFIR) was used to assess the current status of PC and guide development of C3PAC model in the study block. The data were collected through stakeholder engagement, community sensitisation workshops, key informant interviews, focus group discussions, knowledge of health care providers, patient PC need and review of records. The qualitative data were collected using in-depth interview and focus group discussion guides and captured unmet PC need, barriers to PC. The quantitative data on PC need and symptom severity were collected using validated tools such as Supportive and PC indicators (SPICT-4ALL) tool and Edmonton Symptom Assessment System tool and socio-demographic questionnaire. The sessions were audio recorded, transcribed verbatim and back translated. The data were coded and thematic analysis was done and descriptive statistics were used. The data were triangulated with filed notes and supported by quotations from the transcripts.

Results: There a total of 320 cancer patients in a population of 200,000. There were 180 Accredited Social Health Activists, 22 Auxiliary Nurse Midwives, 6 Lady Health Visitors and 25 Community Health Officers in the block. A total of 27 sensitisation workshops or stakeholders meetings were done. Barriers were identified under CFIR domains: Individuals, intervention, inner settings, outer settings and implementation process. At the individual domain, there is lack of capability among health care providers and unmet physical, psychological and social need among cancer patients. Inner setting identified multitasking by health care providers, lack of essential PC medicine, lacunae in functional referral and back referral. Outer setting identified caregiving burden, stigma, collusion, lack of stakeholder engagement and lack of advocacy as barriers to PC. Existing national guidelines for PC for community health worker and medical officers are available but are not being implemented in the community. Implementation process is challenged by poor communication strategies, clarity of role of health care providers, lack of centralised assistance, quality improvement and audit mechanism at the facility level. C3PAC implementation package was developed with strategies to address these barriers. The strategies focussed on education, service delivery, drug availability and policy for providing scalable and sustainable PC. Some of the strategies included customized training module, training by experts, IEC material, periodic meeting with program officers for ensuring essential drug availability, identification of local champions, liaising with Non-Governmental Organisations and dissemination of findings in stakeholder meetings at regional, national and international level.

Conclusion: These findings discussed the current status and strategies to develop a community-based model in this rural setting.

Keywords: Cost-Benefit Analysis, Noncommunicable Diseases, Nurse Midwives, Nurses, Community Health

Dr.Vinodkumar Gangolli

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

Email: lgangolli@gmail.com

ABSTRACT

Objectives: The author works in a Charitable Inpatient Palliative Care (PC) centre in an urban setting. Admission procedure requires Triple H test (Human Immunodeficiency Virus [HIV], Hepatitis B virus, HBC). If positive, admission is denied due to concerns of occupational health and safety, infection control and exposure to opportunistic infections for immune compromised people. Review of literature shows that palliative care service utilisation is lower in People with HIV (PWH) with cancer and stroke than their counterparts who are negative for HIV. Studies reviewing referral patterns, representation in trials and services offered for PWH show an alarming pattern that palliative care is not offered equitably to PWH. In 2005, the International Labour Organisation and the World Health Organization published Joint International Labour Organisation/World Health Organization Guidelines for health services and HIV/AIDS which provide protocols for occupational and patient safety.

Materials and Methods: Material: Review of literature, participant observation from the palliative care centres I am associated with Mixed methods of both quantitative (retrospective audit of referrals and approved admissions) and qualitative (focused group discussions, interviews, health personnel beliefs before and after educative sessions).

Results: Barriers to care for PWH stem from myths and misinformation among healthcare providers. Palliative care centres that are equipped with best practices for provision of safe palliative care to PWH accept referrals.

Conclusion: It is possible to provide safe, equitable access to palliative care for PWH if healthcare providers are sensitised and suitably educated.

Keywords: Equitable Access, People living with HIV, AIDS, Joint ILO/ WHO guidelines, Occupational and patient safety, Palliative care referrals disparities

Saju Joseph¹, Rajesh Jainjangde³, Vinod Kshirsagar³, Prasad Rane², Anurag Mishra², Prakash Fernandes¹

¹Cipla Palliative Care & Training Centre Warje, Pune, Maharashtra, ²Cipla Foundation, Mumbai, ³Cipla Palliative Care & Training Centre, Pune Cipla Palliative Care & Training Centre, Pune

Email: kranti.rayamane@pakh.net

ABSTRACT

Objectives: The World Health Organization recommends improving access to palliative care (PC) as a core component of health systems. The National Health Policy launched by Government of India in 2017 acknowledges the vital role of PC services with rising trend of non-communicable diseases in the community. Intervention research examined community-based PC intervention and support program feasibility. Accredited Social Health Activists (ASHAs) were trained to recognise symptoms using a checklist of Serious Health Suffering as proposed by Lancet Commission. After training, ASHA workers would send patients to Primary Health Care (PHC) and monitor treatment

Materials and Methods: The study covered two Pune blocks. The program trained 291 ASHAs and offered supportive supervision for four sessions at 6-month intervals. ASHAs were assessed on six criteria: Training handbook familiarity, reading comprehension, PC proficiency, SHS symptom list comprehension, use and patient referrals. A one-way repeated measures analysis of variance was used to evaluate parameter scores.

Results: In follow-up comparisons, each pairwise difference between the first and second supervision was significant (P = 0.00). Scores increased significantly in the 1^st year. Even though the scores were statistically significant at the third (P = 0.00) and fourth (P = 0.00) supervision levels, all parameters mean scores decreased. Due to the impossibility to reach ASHA personnel who were preoccupied with COVID-19, supportive supervision declined throughout the pandemic.

Conclusion: ASHA workers can play a key role in PC by identifying patients, providing information and connecting the community to the PHC. They can offer counselling, community awareness and carer education. However, this study reveals that moving attention from PC to COVID-19 affected ASHAs performance. The workload of frontline health care workers and their supportive supervision needs serious attention and should be realistic.

Keywords: Asha, Training

University of Canberra, Bruce, Australia

Email: suja.shan19@gmail.com

ABSTRACT

Objectives: Australia is a multicultural country with more than 17% of the population shared by Indians.^[1] Indian-born is the second largest population after the United Kingdom.^[1] The healthcare system in Australia is facing a huge challenge in catering the services for migrants from various countries due to their cultural differences. In addition, due to the ageing population, emerging chronic diseases and increasing in health technologies places lots of pressure on the health care system in meeting the demands of the people.^[2] Indian culture is one of the diverse and oldest civilisations in the world. Hence, it is vital to understand these cultural variations when we provide care. Advanced care planning is a process that allows a person to express their preferences and goals for future healthcare once decision-making capacity has passed.^[3,4] The main aim of this paper is to highlight the importance of providing culturally sensitive care for people from diverse background.

Materials and Methods: Literature review. This extensive review used various database such as PubMed, CINAHL, Scopus, Embase and Google Scholar. The key words used for searching the literature were culturally sensitive care, Indians, terminal wishes, treatment preferences and healthcare decisions.

Results: It’s surprising that there were no articles found relating to advanced care planning among Indians in Australia. This paper has highlighted how healthcare professionals can integrate culturally sensitive advanced care planning for Indians in residential aged care facilities.

Conclusion: There is still a long way to go relating to culturally sensitive advanced care planning in terms of preferences of end-of-life care options, terminal care wishes and healthcare decisions in end-of-life. Adequate training for healthcare professionals that focus on culturally sensitive care, advanced care planning and how to communicate sensitive matters openly to patients and their family members in end-of-life decision-making need to be implemented.

Keywords: Advanced care planning, Culturally sensitive care, Indians, Australia, Residential aged care settings, Preferences, End-of-life-care

Harshika¹, Parmeshwar Satpathy², S. Elstin Anbu Raj²

¹Independent Researcher, Karnataka, India, ²Department of Community Medicine, Dr. B.C. Roy Multi Speciality Medical Research Centre, Indian Institute of Technology, Kharagpur, West Bengal, India.

Email: swathinayakammunje@gmail.com

ABSTRACT

Objectives: Women with breast cancer suffer from both mental and physical side effects throughout treatment, which can diminish the efficacy of their treatment and worsen their prognosis and quality of life. This scoping review aimed to identify existing digital health interventions developed and assessed in randomised controlled trials (RCTs) among breast cancer survivors.

Materials and Methods: An exhaustive search was conducted in PubMed, EMBASE and CINAHL using suitable keywords. The search was restricted to English language and RCTs focusing on digital health interventions for breast cancer survivors. The JBI framework was utilised for conducting the review and the PRISMA-SCR guidelines was used for reporting.

Results: Of the 3400 articles, 36 RCTs were included; 17 (47.2%) were delivered through mobile applications, 16 (44.4%) were web-based and 3 (8.3%) were wearable devices. The communication methods for delivering the interventions included 17 (47.2%) delivered through the Internet, 11 (30.5%) telephone calls and 8 (22.2%) video calls. The majority of the studies reviewed focused on quality of life (47.2%), depression (25%), fatigue (25%), distress (25%) and physical activity (16.67%).

Conclusion: The current scoping review identified various types of digital health interventions for breast cancer survivors. The majority of outcomes reported were based on improving physical activity, quality of life and psychological symptoms. The utilisation of digital health interventions in the real-world scenario needs to be looked at for improving patient care.

Keywords: Breast cancer survivors, Digital health interventions, Cancer

Megan Doherty¹, Dr. Md. Shaidur Rahman², Mrs. Mukta Mistry², Dr. Zannat Ara³

¹Paediatric Palliative Director-South Asia, Two Worlds Cancer Collaboration, ²Resident Physician and Consultant Pediatric Outpatient Department, Dhaka Medical College Hospital, Dhaka, ³Senior Staff Nurse, Dhaka Medical College Hospital, Dhaka Associate Professor, Pediatric Hematology Oncology Department, Dhaka Medical College Hospital, Dhaka

Email: megandoherty@hey.com

Email: sukhlal.mandal89@gmail.com

ABSTRACT

Background: There was limited development of Paediatric Palliative Care (PPC) to be exactly found in Bangladesh and even within Dhaka Medical College Hospital (DMCH), where there was no structured PPC education for the nurses. The lack of trained professionals in this field was the critical importance to the quality of care provided to children with life limiting conditions by creating many more children with insufficient pain management and emotional support.

Methods and Materials: In person nurses, training conducted at DMCH followed by the Two Worlds Cancer Collaboration guidelines. A purposive sampling technique was also used for the 20 registered nurse participants.

Outcomes of the Project: The project increased nurses’ knowledge and skills, particularly in symptom management and communication with families. The nurse leaders discussed and implemented PPC protocols in their departments, increasing the institutional awareness and support for PPC services.

Discussion and Analysis: Clear project success included heightened nurse competence and the development of a leadership network which ensured long-term sustainability. However, there were challenges such as lack of access to essential medications or resistance from certain hospital departments. These barriers identified the need for assistance through further institutional support and resource investment.

Conclusion: The project was successful in creating PPC education and leadership at DMCH and provided a scalable model for other hospitals in Bangladesh. For PPC services to be sustained and scaled across the country, continued mentorship and institutional backstop were necessary.

Keywords: Communication, Education, Paediatric palliative care

Seema R. Rao, Srinagesh Simha, Santosh K. Chaturvedi

Bangalore Hospice Trust- Karunashraya, Bengaluru, Karnataka, India. Email: michelle.normen@karunashraya.org

ABSTRACT

Objectives: Spiritual care is a vital dimension of palliative care but remains a complex concept with diverse interpretations. To explore healthcare providers’ foundational understanding of spirituality in palliative care, 25 participants in a 3-day spirituality workshop submitted reflective essays. These reflections provided valuable insights into the participants’ pre-existing beliefs and perceptions, offering a baseline understanding to guide the workshop design.

Materials and Methods: This was a content analysis of 25 reflective essays to identify recurring themes and patterns in participants’ understanding of spirituality. Using an inductive approach, the reflections were coded and grouped into themes based on the semantic content of the text. This analysis resulted in three overarching themes: (1) The meaning of spirituality in palliative care, (2) the influence of spirituality in palliative care and (3) the process of providing spiritual care.

Results: The theme ‘Meaning of Spirituality’ included participants’ interpretations of spirituality as a deeply personal journey involving search for meaning and purpose, and answers to suffering. It included individual meaning-making, religious coping, peace and connectedness, with no finite answers. The theme ‘Influence of Spirituality’ captured how spirituality shaped experiences and practices of patients and families, serving both as a source of strength and distress. The final theme ‘Process of Spiritual Care’ focused on how spirituality can be assessed and provided in a palliative care setting, highlighting the need for active listening, person- and family-centred care and accompaniment.

Conclusion: These findings reveal diverse interpretations of spirituality in palliative care, offering valuable insights to inform the design of educational workshops.

Keywords: Spirituality, Palliative care, Healthcare providers, Reflective writing, Content analysis

Shreya Desai¹, Sara Kaushik¹, Dolores Gallagher-Thompson², Karl Lorenz², Lidia Schapira²

¹University of Houston, Houston, Texas, USA, ²Stanford University, Palo Alto, California, USA Email: ranakt@stanford.edu

ABSTRACT

Objectives: Despite rising breast cancer rates among Indians, their family caregiving experiences are understudied. In the Indian culture, caregiving is the purview of women. Yet, men often become primary caregivers in the diaspora. Our goal was to explore the experience of Indian men caregivers of breast cancer survivors.

Materials and Methods: Secondary analyses focused on Indian men caregivers recruited into a mixed methods study to understand the experiences of South Asian breast cancer survivors and their family caregivers. Participants recruited from Stanford University and its surrounding community completed a demographic survey and individual, 1-h semi-structured video interviews to elicit unmet psychosocial, cultural and community service needs. Interviews were analysed using a rapid qualitative approach.

Results: Ten men caregivers (48.4 ± 12.2 y); seven husbands participated. They noted that they provided emotional and financial support, and researched health and treatment information (‘I just wanted to know everything’). They experienced high stress due to: (1) a need to be stoic (‘I went almost silent in terms of not even talking about it’), (2) lack of social support (‘[survivor] didn’t want to share information with friends, so yeah, mostly it was just me’), (3) amplified stress and fear (‘I was scared, and I wanted to talk’) and (4) prioritising the survivors’ needs (‘what do I need to do to help her actually’).

Conclusion: This exploratory study found that men caregivers experience many sources of stress but limited strategies to manage it. Future research should rigorously examine the neglected experiences of Indian men caregivers.

Keywords: Caregiving; Breast cancer; Male caregivers; Serious Illness

Dr. Archana Iyengar¹, Dr. Gayatri Palat², Dr. A. Jagadeswara Reddy¹, Dr. C. Robbie¹, Dr. V. Soundarya¹, R. Kumar¹

¹Pain Relief and Palliative Care Society, Hyderabad, Telangana, India, ²Prof and Head, Palliative Medicine, MNJIORCC, Founder & EC member, Pain Relief and Palliative Care Society, Hyderabad, Telangana, India.

Email: vineela.rapelli@gmail.com

ABSTRACT

Objectives: Pain Relief and Palliative Care Society is a registered charity organisation and one of the largest palliative care service providers in the country which has 36 beds in-patient facility called Kumudini Devi Hospice, 12 van home-based palliative care program and palliative care units embedded in the MNJ Government Cancer Hospital and Niloufer Government Children’s hospital.

Materials and Methods: Dealing with children living with life-limiting/life-threatening diseased and providing care to the kids and families is the most difficult and challenging part of our care. Caring for every child in palliative care (PC) is a new learning worthwhile sharing and disseminating. Paediatric palliative care (PPC) requires adequately trained and skilled nurses and well-qualified and experienced counsellors due to the sensitivity, stress and emotions involved constant upscaling of nurses knowledge and continuum in training and learning is important to have a good quality PPC program and this was initiated mainly with intent of a nurse perspective. Fortnightly academic sessions are conducted within the teams having the concept of ‘All Teach, all Learn’ where the team who are directly involved in child care in either of the service delivery present the most challenging/difficult child. It took off in July 2023 and completed 1 year. These case-based discussions are moderated by Dr. Gayatri Palat who is the HOD of palliative care and also supported by two senior paediatricians and paediatric palliative care consultants who have been working with our organisation for more than 13 years.

Results: Self-reflection of the ppc team in providing care to the child and family which involves the entire team part of the discussions including difficult symptom management, challenging emotional/spiritual issues, complicated end-of-life care and providing good end-of-life care.

Conclusion: In the past 1 year, we have done 35 sessions, inclusive of case presentations, teaching sessions and reflections. Interaction between different teams of service delivery (hospital, home care and hospice) and also discussed, what better could have been done and how.

Keywords: Nurse Narrative, Teaching, Pediatric Palliative Care, Academic sessions, Pediatricians

Dr. Anita Gaule

Topiwala National Medical College, Mumbai, Maharashtra, India. Email: prdshankpal@yahoo.com

ABSTRACT

Objectives: Rheumatoid arthritis (RA) patients are chronic disorder and need price discounted drugs for pain management. Appropriate public-health-program is necessary. RA patients do not have easy access to palliative/rehabilitation services.

Cost availability of DMARA drugs debatable various policy initiatives is needed to be implemented to reduce therapy cost. There is need to facilitate development of sound-sustainable care programs in marginalised-communities.

Materials and Methods: Our presentation is health policy-issue. This is advocacy campaign for RA patients-community.

Results: Drug therapy is out of reach for > 82% patients. Rehabilitation/ palliative care plans non-existent in rural/tribal India. RA-care-services need low-cost-drugs for better quality of life.

Conclusion: Subsidised or low-cost drug-therapy is very effective cost-management with better-compliance. Uniform public health policy needs to be implement and expand cost-cutting measures to include broader range of RA-care services. Need to form common-guideline-manual on this issue. We intend to form an Umbrella group of young-researchers to workout more planned approach to this issue at IAPCON 2025.

Keywords: Pain, RA, Issues

Rajkumar Nirban, Manju Chaudhary, Kirat Abbasi, Parvej Bhati, P. S. Animal, Ahtesham ul Haq, Kailash Meghwal

Acharya Tulsi Regional Cancer Treatment And Research Centre Bikaner, Rajasthan, India

Email: mykshz@gmail.com

ABSTRACT

Introduction: Provision of palliative care services is essential part of comprehensive cancer treatment. Acharya Tulsi Regional Cancer Treatment and Research Institute (ATRCTRI) Bikaner is one of the largest centre in north western India and receives patients from many states including Rajasthan, Punjab, Haryana and Uttar Pradesh. There is immense need for a strong and dedicated palliative services which should include outpatient, daycare, inpatient and home-care services for optimum care of the patients. The major problem as a government institute we faced was inconsistency of staff availability due to non-availability/frequent transfers. Due to this resource constraint, we were able to offer only outpatient department (OPD) service limited to provide morphine and other pain medications. Hence, we started a project with help of Cipla Foundation to strengthen the existing palliative care services at ATRCTRI.

Project Brief: Scope: To strengthen palliative OPD and start daycare, inpatient department (IPD) and home care services at ATRCTRI Bikaner. Geography: Bikaner and adjoining areas, patients come from Punjab, Rajasthan, UP, Haryana and MP.

Services – IPD/OPD/Homecare/Daycare

Major Achievements (15 September 2024–15 November 2024)

Number of patients served: OPD: 322, Daycare:116, Home care: 10

Quality indicators: ESAS filled and triaging done for all patients

Major challenges

Difficulty in getting patient referrals from oncology

Awareness about Palliative Care and services available under the project

Collecting and managing patient data

Training of team and other colleagues

Plans for FY 24-25

More inpatient referrals

Community awareness and capacity building programs

Streamlining service delivery and execution.

Conclusion: Palliative services can be strengthened by bringing in novel approaches otherwise difficult to introduce in government setups through partnerships and cooperation between different stakeholders and government. This model works well and may help us to optimise our care and gradually inculcate these practices into government health system.

Keywords: Public Private Partnership, Service delivery, Palliative service design

Sparsh Hospice, Hyderabad, Telangana, India.

Email: promgr@sparshhospice.org

ABSTRACT

This research explores the significant role of Corporate Social Responsibility (CSR) in fortifying the palliative care efforts of Sparsh Hospice (An initiative of Rotary Club of Banjara Hills Charitable Trust), a non-profit organisation. By leveraging CSR contributions, Sparsh Hospice has been able to broaden its service capacity, enhance patient care quality and extend its outreach to marginalised communities. The study particularly examines the influence of Section 135 of the Companies Act amendments, which have reshaped corporate funding avenues for non-profits. Through quantitative analysis, including organisational reports, stakeholder interviews and case studies of successful CSR collaborations, the paper highlights the strategic adaptations Sparsh Hospice has made to align with new CSR requirements. The findings demonstrate that corporate engagement has been pivotal in expanding Sparsh Hospice’s operational capacity, allowing for more holistic and accessible palliative care services. Ultimately, this paper argues that CSR plays a critical role in the sustainable growth and impact of non-profit healthcare organisations in India’s evolving regulatory landscape.

Keywords: Palliative Care, Hospices, Sustainable Growth, Organizations, Nonprofit, Delivery of Health Care, Social Responsibility

Dr. Priya Treesa Thomas, Dr. Subasree Ramakrishnan, Dr. Faheem Arshad, Dr. Suvarna Alladi

The National Institute of Mental Health and Neurosciences Bangalore, Karnataka, India.

Email: reshmapmohan1@gmail.com

ABSTRACT

Stroke is one of the most common neurological disorders that require tough treatment decisions, especially in the acute phase. Stroke is an acute event, necessitating timely decision-making and management, to reduce the fatality and disability. This study explores the family member’s needs regarding individuals at the end of life following a stroke, aiming to understand how effective needs can align care decisions with the patient’s wishes, manage emotional stress and ensure comprehensive support for all parties involved.

Methodology: An exploratory study with qualitative semi-structured interviews were conducted with family members of patients with stroke who is having poor outcome expectations (n = 10) receiving care in the Intensive Care Units, to gather in-depth insights into their needs in a tertiary care Centre for Neuropsychiatry in Bangalore. Data were thematically analysed to identify challenges, strategies and emotional responses related to prognostication and care. Participants were asked to share their perceptions about factors influencing end of life and palliative care needs. Atlas.ti software is used for the analysis.

Results: Family members were mostly spouses or parents. They acknowledged being significant concerns regarding care: being deeply concerned by the unexpected scenario, ambiguous and tortuous process of medical care, uncertainty regarding the outcomes and difficulty in reaching a decision regarding care. They described the patient’s and family’s need for psychological and practical support as well as their desire for survival. Findings suggest that clear, patient-centred communication improves decision-making processes, enhances emotional well-being and fosters a supportive environment for both patients and families. Recommendations emphasise integrating educational programs and emotional support resources to strengthen communication and palliative care outcomes.

Keywords: End of life, Family members, Needs, Stroke

Mrs. Rupali Malwadkar, Ms. Akanksha Balid, Dr. P. Prasun

Advance Centre for Treatment Research and Education in Cancer (ACTREC), TMC Navi Mumbai, Maharashtra.

Email: rupalimalwadkar769@gmail.com

ABSTRACT

Objectives: Pain is a very common distressing symptom’s in cancer patient. The patient came to the OPD with severe pain despite the regular medication. As per usual practice, such patients are managed with injectable in the OPD procedure room to facilitate rapid titration and review by the medical team and to reduce the emergency department utilisation. This is carried out at a very rapid and efficient way. To describe the pain crisis management at OPD level and turnaround time for pain control. Describe the pre- and post-injectable drug effect on pain score. To analyse the turnaround time for achieving pain control.

Materials and Methods: This study is retrospective review of EMR OPD nursing intervention for pain crisis from 1 May 2023 to 1 November 2024.

Results:

Total patients 253

Male 140

Female 113

Pain crisis patients

NRS No. of patients

7–8 77

9–10 176

Prescribed drugs No. of patient

Paracetamol 72

Fentanyl 75

Tramadol 24

Buscopan 27

Morphine 18

Ketamine 7

Diclofenac 26

Buprenorphine 20

Lignocaine 1

Post injectable

NRS No. of patients

0. 21

1–3 91

4–6 115

7–8 17

9–10 5

Turnaround time

Pain relief time in minute No. of patients % of pain relief

<15 36 14%

15–30 133 52.6%

30–45 53 20.7%

45–60 12 4.8%

>1 h 16 6.4%

Conclusion: As a proactive nurse to help reduce the emergency department workload as well as save the doctors’ time.

Keywords: Pain Crises, Outpatient, Bolus analgesics, Proactive Nurse, Turnaround time

Dr. S. K. Divya, Dr. Nandini Vallath, Ms. Ann Maria Roy

St.John’s Medical College Hospital, Bangalore, Karnataka, India. Email: aiswarya.b@stjohns.in

ABSTRACT

Objectives: Compassion fatigue, a form of emotional and physical exhaustion often experienced by healthcare providers, can significantly impact the well-being of nurses who care for cancer patients. Understanding the unique experiences of these nurses, identifying contributing factors and uncovering the common coping mechanisms relevant in compassion fatigue are essential for developing targeted support systems.

Materials and Methods: This qualitative exploratory study utilised purposive sampling to recruit registered nurses who have first-hand experience with cancer patients. Data were collected through semi-structured interviews and focus group discussions until thematic saturation, following which translation, back translation, transcription and coding of data will be done.

Results: From both semi-structured interviews and focus group discussions done, themes evolved appear to be significant, which can be summarised after systematic qualitative analysis of the data. Based on this study, we will attempt to recommend the interventions to address the issue of compassion fatigue.

Conclusion: The conclusion will be drawn following the completion of data analysis.

Keywords: Compassion Fatigue, Cancer patients, Qualitative study

Mayank Gupta, Rohit Mahajan, Sapna Marcus, Anil Goel, Anju Grewal

All India Institute of Medical Sciences, Bathinda, Punjab, India. Email: drm_gupta@yahoo.co.in

ABSTRACT

Background: The ‘Strengthening of Palliative Care Services in Bathinda’ project, supported by Corporate Social Responsibility funding, is a pioneering initiative established at AIIMS Bathinda. The project aims to deliver comprehensive palliative care to cancer patients in Bathinda, with a focus on enhancing their quality of life through accessible, holistic and patient-centred services. The initiative serves six sectors, comprising 27 subcentres, in Bathinda, including the Community Health Centre in Goniana. Services are provided by a multidisciplinary team which includes palliative care doctors, nurses, dietician, medical social worker and psychologists.

Methods: A 3-month retrospective review of palliative care services. Anonymised data were collected from the medical records.

Results: The impact of our services is evident in the consistent increase in patient enrolment, with 44 unique new patients served in September, 64 in October and more than 100 in November 2024 so far. These figures reflect the growing trust and reliance on our palliative care model, and also the urgent need for palliative care in rural areas. All patients underwent comprehensive symptom assessment using Edmonton symptom assessment scale and psychosocial assessment. The services were provided with a holistic approach, addressing physical, emotional, social and dietary needs through symptom management, dietary consultation, psychological counselling and social support services. Patients were catered to through outpatient, inpatient consultations and homecare services. The project uniquely integrated specialised medical care with community engagement initiatives and logistical support, such as free travel support, to remove barriers to care. A critical component of the project is community engagement. Through training and awareness programs, we have empowered community health workers to identify, refer and support patients requiring palliative care. This grassroots-level involvement ensures early intervention and wider outreach within the community.

Results: This initiative underscores the importance of Corporate Social Responsibility in establishing palliative care services in enhancing the quality of life for cancer patients, addressing not only their medical needs but also their psychosocial challenges. This initiative not only improves the lives of cancer patients and their families but also sets a benchmark for delivering sustainable and compassionate palliative care, addressing unmet needs in rural settings.

Keywords: Palliative Care, Corporate, Social Responsibility, India

Republica Sridhar, Gauthaman Kalamegam

RMD Group of Hospitals, Chennai, Tamil Nadu, India. Email: rmd.rmd1970@gmail.com

ABSTRACT

Background: Genetic disorder highly prevalent in India and about 0.5 million are born with malformation every year (Verma, 2020). The National policy for rare diseases (2021) highlights the challenges due to unavailability of early diagnosis, intervention, treatment and lack of awareness and who will be responsible. Palliative care (PC) helps bridge the communication issues and treatment with transparency. Herein, we report a case of Zellweger syndrome and neonatal PC issues.

Case Report: A 24-days-old female baby delivered by caesarean section in a private hospital, whose birth weight 2.6 kg, had developed paroxysms of seizure disorder. Investigations led to the diagnosis of Zellweger syndrome (Neuromigrational disorder), which carried grave prognosis and the doctors had communicated to parents that child will die soon and referred to PC.

Clinical Course: The PC team involved doctors, nurses and parents referred neonatal team and our management. The parents were initially not agreeing for supportive care as they were convinced that child will die if oxygen support is withdrawn. Our multi-disciplinary team explained the importance of PC following which the parents agreed for supportive care at our hospital. Paroxysms of seizures, hypoxia and aspiration were managed. Parents were expecting baby to die immediately and insisted on oxygen withdrawal. The nursing staff was having a care givers burden being very attached to child and difficulty in goal setting.

Conclusion: Awareness of rare diseases and early PC intervention; effective communication to the family and caregivers and understanding and managing the psychosocial burden of caregivers are cornerstones of PC.

Keywords: Education, Palliative care, Psychological issues, Zellweger syndrome

Sonali Deshmukh, Shruti Shinde, Vivek Nirabhawane, Prakash Fernandes, Saju Joseph

Cipla Palliative Care and Training Centre, Pune, Maharashtra, India. Email: vandana.khode@ciplacare.com

ABSTRACT

Objectives: Many bereaved family members are at risk for mental and physical health issues after a loved one dies from cancer, but these needs are often missed in the healthcare system. A simple, bereavement risk screening tool could help identify family members who need psychological care after the death of a loved one due to cancer.

Materials and Methods: A tool assessing carer risk was utilised, comprising 21 statements: 17 related to risk factors and four pertaining to major life stressors. The tool was administered by a social worker or psychologist to the primary carer once the patient was declared to be in end-of-life (EOL) care. An independent samples T test was employed to assess whether a statistically significant difference exists between carer gender and bereavement risk statements.

Results: This retrospective cohort included 542 patients on EOL care from April 2023 to March 2024. These patients had an equal share of female (n = 270, 50%) and male (n = 272, 50%) as primary carer. A little <3/4^th (n = 390, 72%) of the carer were called back and provided support. The mean average of the 21 statements shows significant association across gender (Female = 0.87, Male = 0.47; t = 2.878, P = 0.000). Significantly more female (Mea n = 0.70) compared to males (Mea n = 0.36) reported on various risk factors (t = 3.129, P = 0.002) which they associated with due to the death of the patient. However, there was no significant association reported across gender for major life stressors.

Conclusion: This study suggests that women report a higher incidence of psychological symptoms and are more inclined to seek support after a loss compared to men. This discrepancy may be attributed to societal expectations regarding emotional expression. Conversely, men often face challenges in openly expressing grief, which can result in difficulties with coping mechanisms and increased social isolation.

Keywords: Bereavement, risk assessment, gender

Dr. Vijayshree Patil, Dr. Leena Gangolli, Ms. Sandhya Rajhans, Dr. Adnan Khan, Dr. Hussain Burhanpurwala

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

Email: kgvm1938@gmail.com

ABSTRACT

Objectives: Sukoon Nilaya Palliative and Supportive Care Centre a part of King George V Memorial Trust provides compassionate and holistic care for patients with serious and chronic illnesses. It focuses on the physical, emotional and spiritual needs of patients and their families. Established to address gaps in healthcare, Sukoon Nilaya strives to improve lives through specialised therapies, training and partnerships.

Materials and Methods: The centre has helped over 2,000 patients with services such as inpatient department, outpatient department, teleconsultations, occupational therapy, speech and swallow therapy and caregiver support. Training programs for caregivers and volunteers ensure better care at home. Collaborations with government hospitals have extended services to outpatient departments. Partnerships with MUHS and SNDT have introduced a fellowship in palliative care and nursing courses. Sukoon Nilaya is also working toward becoming a Centre of Excellence in palliative care, focusing on service delivery, training and research.

Results: Patients and caregivers report improved quality of life and satisfaction with the care provided. Occupational and speech therapies have been particularly impactful. Volunteer and professional training programs have strengthened care delivery. Partnerships with government hospitals have expanded access to services, reaching more patients.

Conclusion: Sukoon Nilaya shows how holistic care and strategic collaborations can improve healthcare for patients with chronic conditions. Its innovative approach, combined with training and partnerships, makes it a model for palliative care. The planned Centre of Excellence will further enhance its impact, ensuring better healthcare for all.

Keywords: Non Cancer, Palliative Care, Quality Indicators, cancer Palliative Care

Dr. Vijayshree Patil, Dr. Adnan Khan, Sr. Mudita Yadav

King George V Memorial trust, Mumbai, Maharashtra, India. Email: husain7865222@gmail.com

ABSTRACT

Objectives: Sukoon Nilaya Palliative Care Centre specialises in holistic care for patients with chronic and terminal illnesses. This case study focuses on PT and AQ, a TB meningitis patient admitted in February 2022, highlighting the interplay of medical, emotional and socioeconomic challenges in delivering comprehensive palliative care. The case demonstrates the impact of caregiver burden, familial discord and limited financial resources on patient outcomes.

Materials and Methods: The patient underwent four admissions over 2 years, receiving medical management, nutritional care and caregiver support. Structured nursing care included training caregivers, managing bedsores and providing emotional counselling. Interventions were guided by socio-economic assessments and community support initiatives. The centre responded to abandonment by the caregiver through coordinated efforts involving legal resources, Non-Governmental Organisation support and police assistance, ensuring continuity of care.

Results: Effective medical and nursing care improved the patient’s condition during initial admissions, stabilising speech and mobility. However, recurrent caregiver burnout, financial stress and family neglect led to significant psychosocial challenges. Interventions by Sukoon Nilaya, including engaging external support systems, eventually facilitated the patient’s reintegration into her home environment.

Conclusion: This case underscores the complexities of palliative care in socioeconomically constrained settings. It highlights the critical need for pre-admission protocols, caregiver education and community partnerships. Strengthening support systems and ensuring robust family involvement are essential for sustaining long-term care in such cases.

Keywords: Caregivers burden, Non cancer, Palliative care

Seena Vengalil, Saraswati Nashi, Soja Joseph, P. B. Binesha, Kailash Ganga, K. S. Sridharan, Aswathi Nair, Ayana Mol, Dinesh Kumar, A. Nalini, Priya Thomas

National Institute of Mental Health and Neurosciences (NIMHANS, Bengaluru), Karnataka, India

Email: missypriya@gmail.com

ABSTRACT

Objectives: Amyotrophic lateral sclerosis (ALS) is progressive neurodegenerative disease with high palliative care needs. This study was conducted to understand the sociodemographic and clinical characteristics of ALS patients which provided home care services and their unique needs.

Materials and Methods: Retrospective review of files of ALS patients recruited under neuropalliative care project at quaternary care centre for neurological conditions in India and were provided homecare services by a specialised neuropalliative multidisciplinary team between November 2022 and October 2024. Symptom burden was measured using Integrated Palliative Care Outcome Scale Neuro S-24 and needs were assessed by semi-structured interviews with patients and families at every visit.

Results: Among 766 patients recruited, 53 were provided homecare services given their proximity to study centre. Twenty-eight (52.8%) were men. Mean age at presentation was 58.57 ± 11.97 years. Mean duration of illness was 37.17 ± 37.9 months. Thirty-nine (73.6%) had limb onset and 14 (26.4%) had bulbar onset ALS. Mean ALSFRSr score was 26.3 ± 9.27. Fifty-one (96.2%) had limb weakness, 40 (75.5%) had dysarthria, 34 (64.2%) had dysphagia and 23 (43.4%) had breathing difficulty at presentation. Nineteen (35.8%) were wheelchair bound, 2 (3.8%) patients were on NG tube, 4 (7.5%) on PEG, 6 (11.3%) on NIV and 1 (1.9%) on invasive ventilation. Poor mobility was most commonly reported overwhelming symptom (28.3%). Mean follow-up duration was 6.7 months. (75.5%) patients had need for rehabilitation, 35 (66%) emotional or psychological support, 34 (64.2%) symptom management, 32 (60.4%) nursing care, 31 (58.5%) informational and 6 (13.2%) financial support needs were identified.

Conclusion: As the disease progresses, ALS patients become homebound. It poses varied challenges and often need multidisciplinary team interventions.

Keywords: Home care, Chronic Neurological conditions, Motor Neuron Disease

Dr. S. P. Vibha, Maya Correa, Dr. S. Rekha

Swami Vivekananda Youth Movement, Mysuru, Karnataka, India. Email: s.p.vibha@gmail.com

ABSTRACT

Objectives: Patient satisfaction and quality of life are critical indicators of the effectiveness of palliative care services. This evaluation focuses on understanding the experiences of patients receiving home-based palliative care. By assessing their satisfaction and quality of life, this study seeks to identify areas of strength and opportunities for improvement in palliative care delivery.

Materials and Methods: A cross-sectional survey was conducted among 50 participants receiving home-based palliative care from SVYM, Mysuru. Data were collected using a pre-structured questionnaire that included socio-demographic details, patient satisfaction metrics and the World Health Organization Quality of Life – Brief Version (WHOQOL-BREF) questionnaire to assess quality of life.

Results: Among the study participants, 60% were female, and 32% belonged to the age group of 41–59 years. In addition, 44% of participants were suffering from cancer. The mean duration of receiving palliative care was 12 ± 2 months. Based on the WHOQOL-BREF questionnaire, 48%, 38% and 6% of participants had high, average and low quality of life grades, respectively. The majority of responses related to patient satisfaction with the palliative care team were very positive.

Conclusion: The assessment of quality of life is fundamental for evaluation of palliative care services. There is a need to develop simple and validated tools for assessing quality of life for patients receiving palliative care.

Keywords: Quality of life, home based care

Preetak Maurya, Neethu S. Abhram, Himanshu Varshney

All India Institute of Medical Sciences, New Delhi, India.

Email: drbalbir10@gmail.com

ABSTRACT

Objectives: Burnout syndrome is a non-specific clinical syndrome mostly associated with distress related to the profession among doctors, especially palliative physicians. There may be many risk factors for burnout including long working hours, high workload, family issues, decreased interaction with others and the presence of other stressors. Mindfulness, adequate sleep, leisure time and better working circumstances can prove as protective against burnout. There have been multiple studies in developed countries addressing burnout in palliative physicians and its prevention and management but there are not many Studies on the same subject pertaining to the Indian scenario. This study is conducted in our centre to bridge this gap in the literature. Primary objective – This study was to determine the prevalence of burnout among palliative care physicians in India. Secondary objectives – This study was to determine the factors affecting burnout in palliative care physicians in India.

Materials and Methods: This was cross-sectional study conducted among palliative care physicians in India. After getting ethical clearance from the Institutional Ethical Committee, total 70 palliative care physicians were included in the study and they were assessed using semi-structured socio-demographic pro forma and Copenhagen Burnout Inventory. The data was recorded in MS Excel sheet and responses were analysed.

Results: The majority of participants are under 30 years old (66.2%), with a small proportion over 40 years (2.9%). Most respondents are male (72.1%), single (69.1%) and without children (80.9%). Junior Residents/Postgraduates represent the largest group (66.2%), followed by Senior Residents (20.6%). Nearly half of the respondents have <1 year of experience in palliative care (48.5%), while 16.2% have more than 5 years of experience. The availability of supporting staff and services is high (88.2%), yet 76.5% report night duties, indicating a significant workload. Burnout Levels: Using total burnout scores: Most participants have low burnout (85.3%), with 10.3% in the moderate category and only 4.4% experiencing high burnout. Physical Burnout: 66.2% have intermediate burnout, with only 7.4% in the very high category. Patient-Related Burnout: 58.8% report intermediate levels, while 26.5% experience low levels. Work-Related Burnout: 58.8% report intermediate levels, with 19.1% experiencing high burnout.

Conclusion: Burnout levels are predominantly low to intermediate among palliative care professionals. However, a notable proportion experience moderate to high levels of work-related burnout, particularly among junior and senior residents.

Keywords: Burn out ,Palliative care , Physician, Palliative Care Physician

Jyothsna Kuriakose, Jewell Joseph, Shalom Isaac, Saraa Mohmed, Reka Karuppusami, Barney Isaac, Balamugesh Thangakunam, Devasahayam Jesudas Christopher

Department of Palliatve Medicine, Christian Medical College Vellore Email: jenifermugesh@yahoo.com

ABSTRACT

Objectives: Despite the growing emphasis on integrating palliative care into the care continuum of advanced illnesses, patients with interstitial lung diseases (ILD) are seldom referred to specialist palliative care (SPC) services. Understanding patient needs is paramount for timely integration. We aimed to assess unmet needs, symptom burden and role of SPC in severe ILD.

Materials and Methods: This is an interim analysis of a prospective observational study. Adult patients with severe ILD were eligible. Palliative care outcome scale (POS) was used to identify needs. Symptom burden was assessed using COPD Assessment Test (CAT) and Hospital Anxiety and Depression Scale (HADS). Outcomes were measured at baseline (T0), first (T1 – virtual/face-face) and 2^nd month (T2– virtual/face-face). Multidisciplinary SPC was provided at all timepoints.

Results: Of the 81 patients recruited, 78 completed T1 and 76 completed T2. Mean age was 52.6 years (±11.583). About 56.6% (n = 45) were female. The most common needs were ‘family or friends anxious/worried’ at T0 (95.1%) and T2 (78.9%), and ‘patient anxious/worried’ (84.6%) at T1 and T2 (78.9%). More than 95% reported ‘breathlessness on walking upstairs’ at all timepoints. Prevalence of anxiety was 39.5%, 12.3% and 4.9% at T0, T1 and T2, respectively. Prevalence of depression was 48.1%, 21.8% and 10.5% at T0, T1 and T2, respectively. Compared to T0, there was significant reduction in scores for POS, CAT and HADS at T1 and POS and HADS at T2 (P < 0.01).

Conclusion: Patients with severe ILD have significant needs that can be effectively met by timely integration of multidisciplinary palliative care.

Keywords: Unmet needs, ILD, Palliative care, Integration

Bindu Shibu, Sangeetha N. Mithili Sherigar, Seema R. Rao

Bangalore Hospice Trust - Karunashraya, Bangalore, Karnataka, India. Email: sr.jeena@karunashraya.org

ABSTRACT

Objectives: Malignant fungating wounds are seen in 5–14% of patients with advanced cancer and require specialised management. Thorough and detailed assessment and documentation of wounds are vital for enhancing the quality of care for terminally ill patients. This retrospective audit examines the characteristics of malignant wounds and their management.

Materials and Methods: A retrospective audit of the medical records of advanced cancer patients with malignant wounds from 1 September 2023 to 31 August 2024 was conducted at a 73-bed hospice in Bengaluru. Data on wound-related issues and management were collected and analysed using descriptive statistics.

Results: Among 1198 patients admitted to the hospice, 113 (9.4%) had malignant wounds. The mean age was 60.3 years and 57.4% were female. Head and neck (40%) and gynaecological cancers (28.7%) were the most common type of cancer. Key concerns included pain, with an average score of 5.65 (90%), malodour (83%), exudates (65.6%), infection (82%), bleeding (7%) and maggots (19%). Sterile paraffin gauze with metronidazole was the most commonly used dressing. Topical lidocaine, turpentine, turmeric, charcoal and haemocoagulase were utilised for pain, maggots, infection/ inflammation, odour and bleeding.

Conclusion: This audit highlights the complexities of wound management at the hospice. It also reflects the need for a tailored approach for wound management, with a range of conventional and alternative approaches, emphasising the need for specialised wound care and symptom management, which are essential for maintaining comfort and quality of life.

Keywords: Palliative care, Wound care, symptom management and quality of life

Michelle Normen, Seema R. Rao

Bangalore Hospice Trust - Karunashraya, Bengaluru, Karnataka, India. Email: mithili.narayan@karunashraya.org

ABSTRACT

Objectives: End-of-life care encompasses a holistic approach integrating physical, psychosocial and cultural dimensions, ensuring dignified end-of-life experiences. The ‘Final Journey Form’, developed in the hospice, captures individual preferences for post-death rituals, body preparation and final wishes. Addressing these sensitive issues proactively reduces family stress and guides healthcare providers in delivering personalised care. This study aims to examine patient and family preferences about after-death care.

Materials and Methods: A 6-month retrospective analysis of the Final Journey Form was conducted from 1 January 2024 to 31 June 2024, to gather data on patient and caregiver preferences for after-death care. Descriptive statistics were used to analyse the data.

Results: Of the 225 patients, 182 completed the Final Journey Form. Of these, 88.9% were from Karnataka, 56% were married and 51.3% belonged to low-income backgrounds. Preferences regarding after-death care were predominantly provided by caregivers (80.4%), primarily sons (34.3%), spouses (23.2%), daughters (18.8%), siblings (8.8%), parents (5.5%) and extended family (8.2%). Only one patient was involved in this conversation. Regarding body positioning, 87.9% preferred legs straight and tied with hands on the chest, with 10% preferring seated position. For death garments, 74.7% chose attire provided by the hospice, while 25.3% chose that provided by family (white cloth, saree or dhoti and shirt). Only three patients expressed interest in organ donation. Seven families utilised special assistance such as ambulance services and crematorium bookings.

Conclusion: The ‘Final Journey Form’ facilitates personalised care by aligning medical practices with patients’ and families’ personal and cultural values, improving the quality of end-of-life care.

Keywords: Final Journey, Personalized care, Dignity, Hospice care

Mathew Jinu Saji, Mithili Sherigar, Seema R. Rao

Karunashraya, Bangalore, Karnataka, India.

Email: shankars@karunashraya.org

ABSTRACT

Objectives: Physiotherapy plays a key role in enhancing pain management, physical independence and overall well-being of patients with terminal illnesses. Despite proven benefits, the integration of physiotherapy in palliative care is suboptimal. This study evaluates the referral rates, characteristics and utilisation patterns of physiotherapy referrals in a hospice setting in urban India.

Materials and Methods: Patient records from 1 January 2024 to 30 June 2024 were collected retrospectively to analyse physiotherapy referrals. Descriptive statistics were used to summarise the data.

Results: Out of the 420 patients admitted to the hospice between January and June 2024, 207 patients (49.3%) were referred for physiotherapy interventions. The mean age was 62.0 years (range: 17–92); and 55.7% were female. Gynaecological (28.2%), gastrointestinal (22.8%) and head-and-neck cancers (17.4%) were the most common cancer sites. The average duration of physiotherapy interventions were 20 days over the course of the study. Mobilisation (63.8%), positioning (bedside sitting 57%) and pain management (38.9%) were the frequently used interventions, followed by posture management (18.8%) and chest physiotherapy (12.1%). The rehabilitation activities included joint range-of-motion exercises in 60.3% and passive exercises in 17.5%. Specialised therapies, such as Complete Decongestive Therapy and Trismus Management, were administered to select patients based on their individual needs.

Conclusion: The study highlights the vital role of physiotherapy in hospice and palliative care, with the high referral rates indicating its importance. However, limited use of specialised interventions suggests opportunities for expanding physiotherapy training and resources. Tailored interventions focusing on cancer-specific needs can further enhance the quality of care.

Keywords: Physiotherapy intervention, Gait training, Assessment

Mansi Shah

Happy Feet Home, Mumbai, Maharashtra, India. Email: mansi@happyfeethome.org

ABSTRACT

Pain is common in paediatric populations and is best treated with a multi-disciplinary approach (Olaizola et al. 2024); Arts-based therapy plays a significant role in paediatric palliative care by offering children and their families creative, expressive outlets to navigate the emotional, psychological and physical challenges of life-limiting illnesses. This therapeutic approach, encompassing art, music, dance and play, fosters communication and self-expression, especially when verbal language is limited or difficult. Through engaging in artistic activities, children can process complex feelings such as fear, anxiety and grief, promoting emotional resilience. Arts-based therapies also help improve quality of life by enhancing relaxation, reducing pain perception and facilitating a sense of control and autonomy.

Keywords: Paediatric Palliative Care, Homecare Program, Art-Based Therapy, Life-Limiting Illnesses, Creative Therapies, Emotional Well-being, Psycho-social Support, Stirling Wellbeing Scale, Children, Quality of Life

Arun Stanley, Mithili Sherigar, Seema R. Rao

Bangalore Hospice Trust - Karunashraya, Bengaluru, Karnataka, India Email: michelle.normen@karunashraya.org

ABSTRACT

Objectives: The provision of psychosocial care is a critical component of holistic care for patients with terminal cancer. Our hospice has a structured process of screening, evaluation and referral for comprehensive psychosocial care. This 6-month audit aimed to review the psychosocial variables, distress levels and interventions provided within this framework.

Materials and Methods: Data on demographic and psychosocial variables was extracted from medical records of 225 terminal cancer patients admitted to the hospice. Descriptive analysis was conducted to summarise and analyse the data.

Results: The mean age was 61.4 years; 52.9% were femal. Most common cancer types were gynaecological (29%) and gastrointestinal (27.7%). About 51.3% belonged to the lower-income group; 44.4% reported history of substance abuse. Decision-making was predominantly undertaken by children (53.8%). Average distress score was 5.1, with physical and emotional problems being the predominant source of distress. Mean Patient Depression Questionnaire-9 score was 6, with 41.3% expressing suicidal thoughts. Mean General Anxiety Disorder-7 score was 3.8, indicating minimal anxiety. Hospice was the preferred place of care for 67.6%, and 50.9% chose hospice as the preferred place of death, all of whom died there, with average duration of stay being 33 days. Interventions averaged 11 sessions per patient, with supportive psychotherapy, family counselling, legacy interventions, diversional activities and therapeutic life review being the common interventions.

Conclusion: This audit highlights the importance of having a structured framework for evaluating psychosocial needs and reinforces the importance of integrating comprehensive psychosocial care into routine hospice practices to meet the multifaceted needs of patients and their families in end-of-life.

Keywords: Hospices, general anxiety disorder, Suicidal Ideation, Depression, Psychiatric Rehabilitation, Counseling, Anxiety

Dr. Shaqul Qamar Wani, Dr. Maryam Ayub, Dr. Uroosa Farooq, Miss. Tabinda Wani

Sher-E-Kashmir Institute of Medical Science Soura , Srinagar, Jammu and Kashmir, India.

Email: mahrukhpervaiz14@gmail.com

ABSTRACT

Background: India is facing a growing burden of cancer, resulting in high cancer-associated mortality. In India, about 80% of the cancer cases present at Stage III and Stage IV and two-third of them are incurable at the time of presentation. The objectives of end-of-life care (EOLC) are to achieve ‘death with dignity’ for dying patients, to emphasise on quality of life and to acknowledge palliative care as a basic human need.

Materials and Methods: A cross-sectional study was conducted among patients with advanced cancer attending the Pain and Palliative Care Unit, SKIMS. The study was conducted for a period of 6 months from June-2024 to November-2024. A total of 382 patients were included in the study by using non-probability purposive sampling technique. A pre-tested semi-structured questionnaire having questions on socio-demographic profile and Edmonton Symptom Assessment System (ESAS) assessment tool was used for data collection. The analysis of data was done using the Statistical Package for the Social Sciences version 24.

Conclusion: With EOLC, the purpose is to support the vital functions of the patient making him pain-free and live with dignity. With proper communication and palliative care support, futile treatment can be avoided. Awareness regarding palliative care must be spread in communities to empower family members and patients for EOLC.

Results: Out of 382 patients assessed, pain reduction was seen in majority. Two hundred and forty-eight (65%) followed by 101 (26%) of patients who got deteriorated and 33(9%) of patients showed no change. More than half of patients 208 (54.4%) showed improvement in overall well-being. The overall ESAS score showed improvement in 248 (65%) of patients.

Keywords: Cancer, Dignity, EOLC, Palliative care, ESAS

The Raft, Hyderabad, Telangana, India.

Email: dr.sravannthimaya@gmail.com

ABSTRACT

Objectives: The phrase ‘time heals all wounds’ frequently overlooks grief ’s complexity. Grief, bereavement and grieving are all linked but separate. Grief presents itself in unpredictable emotional, social, cognitive and physical ways; some people recover and reintegrate after a tough time, while others persist. Re-traumatisation can lead to strong memories and poor psychosocial functioning. This might result in ‘complicated’, ‘prolonged’ or ‘traumatic’ mourning, which affects 20% of mourners. For them, time exacerbates sorrow, resulting in prolonged anguish that strains relationships and traumatises friends and family. The case-study focuses on a 29-year-old woman living with her partner, who is navigating deep grief from losing his mother 6 years ago.

Materials and Methods: A person-centred, compassionate approach and grief psychoeducation were employed. Biweekly online therapy for 4 months lasting 1 h and 30 min was implemented.

Results: We investigated her emotions, triggers and patterns with psychotherapy and EFT, emphasising validation and awareness for emotional grounding. Doodling enabled her to vent her fury, helplessness and frustration. TF-CBT helped her overcome negative thoughts and beliefs regarding her partner’s grief. Self-care, compassion and adaptive coping skills enabled her to grieve while managing her partner’s complex grief. This improved her daily life and functionality.

Conclusion: Grief can be treated holistically with psychotherapy, EFT and TF-CBT. Using these approaches, caregivers can manage their emotions and assist their partners in seeking help. Unprocessed sorrow and its long-term consequences can be mitigated by encouraging emotional expression, improving coping methods and strengthening connections, restoring balance to afflicted lives.

Keywords: Psychotherapy and EFT, Art Therapy (Doodling), TFCBT (Trauma-Focused Cognitive Behavioral Therapy), Self-Care and Compassion, Adaptive Coping Skills, Clinical Interview, Rapport Building, Cultural Meaning of Grief, Psychoeducation, Exploring Previous Coping Mechanisms

The Raft, Hyderabad, Telangana, India.

Email: sravannthimaya@gmail.com

ABSTRACT

Objectives: Surgical procedures in cancer care reduce disease progression and saves lives, when oncologists say: ‘We will ascertain the extent of the procedure once we begin’. Patients get anxious. Imaging modalities such as positron emission tomography, magnetic resonance imaging and computed tomography scans provide insights, but disease progression – its nature, severity and invasiveness – often becomes apparent only during surgery. Despite prior discussions, under emergencies, families may consent while patients are under anaesthesia, potentially deviating from plans. Nearly 50% of those diagnosed with aggressive cancers experience this, emphasising the need to address decision-making, family dynamics, patient anxieties and medical proxies. Case study focuses on a 32-year-old-female with breast cancer diagnosed in July 2023, local recurrence undergoing chemotherapy for a mastectomy with reconstruction.

Materials and Methods: Regular therapy for 12 sessions done for 1 h 30 min in online mode

Results: Therapy explored her as an individual, using REBT and CBT to manage anxiety and reframe negative thoughts. As an artist unable to work, meaning-making and narrative therapy helped restore purpose. ACT, fear of recurrence therapy, mindfulness and exposure therapy addressed fears and promoted grounding. Communication between the client, family and medical staff facilitated informed decisions on medical proxies and surgical outcomes.

Conclusion: This demonstrates the need to address emotional and psychological issues through various therapy modalities for cancer patients undergoing surgery. This intervention improved her coping skills and boosted her and her family’s decision-making capacities before surgery enabling the client to reclaim a sense of autonomy in her cancer journey, enhancing her overall quality of life.

Keywords: Acceptance and Commitment Therapy and FORT-Fear of cancer recurrence, Mindfulness, Informed Decisions, Autonomy, manage anxiety and promoting acceptance.

Dr. Seema Mishra, Dr. Suhana Sulfiker, Dr. Anu Sachdeva, Dr. Ramesh Aggarwal

All India Institute of Medical Sciences, New Delhi, India. Email: dr.sanjeevkumar.aiims@gmail.com

ABSTRACT

Background: Managing neonates with complex, life-limiting conditions poses unique challenges, requiring interdisciplinary collaboration and sensitive communication. This case series highlights the integration of palliative care in shared decision-making for three neonates with severe congenital anomalies at a tertiary care centre in India.

Case Summaries: (1) Patau’s syndrome: A 28-day-old male presented with multiple congenital anomalies, including Tetralogy of Fallot, corpus callosum dysgenesis and necrotising enterocolitis progressing to pneumoperitoneum. Despite ventilatory support and surgical intervention, the prognosis was grave. The palliative care team facilitated decision-making, addressing ethical dilemmas and parental distress while providing symptom relief and psychosocial support. (2) DiGeorge syndrome: A 5-month-old infant with truncus arteriosus post-repair and persistent complications such as recurrent infections, respiratory distress and developmental delays. Discussions centred on long-term quality of life, antimicrobial resistance and the appropriateness of life-sustaining interventions. Counselling helped align parental expectations with realistic outcomes. (3) Congenital Diaphragmatic Hernia (CDH): A preterm female neonate underwent surgical repair of CDH and faced prolonged respiratory and feeding challenges, developmental delays and recurrent desaturations. Despite aggressive management, her condition deteriorated. The family ultimately opted for comfort-focused care after extensive counselling sessions.

Discussion: These cases underscore the critical role of palliative care in managing complex neonatal conditions. Key elements included effective symptom control, addressing multifaceted parental distress and guiding ethically challenging decisions. The interdisciplinary approach enabled families to navigate their grief and achieve a dignified end-of-life experience for their children.

Conclusion: Integrating palliative care into neonatal management enhances holistic care, ensuring compassionate support for both patients and families. This case series demonstrates the importance of early palliative involvement in facilitating shared decision-making and improving end-of-life care outcomes.

Keywords: Neonates, End of Life, Palliative Care