Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit.

End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article: Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.

Issues Related to Children-Faced by Armed Forces Families When Caring for Patients in Palliative Care - A Qualitative Study.

Objectives: Access to palliative care is limited, especially in rural India. Children needing care by palliative teams may themselves be patients, or siblings and children of patients. Armed forces families face characteristic lifestyle challenges - frequent transfers, living in difficult and remote areas, serving personnel staying apart from families for long periods - very different from issues faced by civilians. Military service increases the risk of psychosocial burden for serving personnel as well as families. Most depend on private and state medical services for palliative care so it is important for the palliative community to understand their issues. This study aimed to explore the issues related to children - faced by armed forces families when caring for patients in palliative care. Material and Methods: Qualitative study based on thematic analysis of semi-structured interviews with caregivers - either serving personnel or their dependents, in three centres. Results: Analysis of the 15 interviews showed that armed forces families face complex challenges related to children when caring for the palliative patient due to frequent movement, lack of paediatric palliative services in far-flung areas, disruption of the continuity of care, social isolation, language, and cultural barriers when living in non-native areas, inability to build and access family and community support and financial burden due to restrictive reimbursement policies. Conclusion: Although medical and administrative support within the organisation provides a cushion, wives have to manage alone in the father's prolonged absence, and safety is a concern for children when living outside the campuses and serving personnel report guilt, anger, and helplessness at not being present when needed. Awareness of these issues can enable palliative workers to provide more meaningful support tailored to the needs of service families.

Wellbeing of Palliative Care Workers During Covid-19 Pandemic: Implications for Social Work Practice.

The present study is aimed at examining the wellbeing of palliative care workers in India (n = 114) with special reference to work related variables. The World Health Organization's five item wellbeing index was used to measure the wellbeing of the respondents. In general, the wellbeing of the respondents was found to be good. Furthermore, the age of the respondent (p < 0.001), gender (p < 0.05), work setting (hospital vs. non-hospital) (p < 0.05), work environment (p < 0.01), recent unemployment (job loss) (p < 0.01), years of experience in palliative care (p < 0.05), number of hours of work per week (p < 0.05), and the number of clients who died in the previous month (p < 0.01), were all found to be associated with the wellbeing of the respondents. Specifically, young and female respondents, those engaged in hospital based palliative care, having a poor work environment, facing recent unemployment, having less experience, working for more number of hours, and having more number of patients dying in the previous month, all had a lower level of wellbeing. The implications for social work practice have also been discussed in detail.

Caring and Conflict-Palliative Care in the Armed Forces: The Challenges for Caregivers.

OBJECTIVES: In India, Palliative care remains inaccessible, especially in remote areas. This study aimed at exploring the experience of caregivers related to arranging palliative care at home, for personnel and family members of an armed force. MATERIALS AND METHODS: Qualitative study based on thematic analysis of semi-structured interviews with adult caregivers - either serving personnel or their dependent family members. RESULTS: Lack of palliative care in rural areas makes arranging home care challenging for Indian caregivers, especially in armed forces. The families stay alone and personnel cannot be there to look after loved ones. Constraints of leave, financial and legal problems, frequent movement and social isolation disrupt care as well as family and community support systems, leading to psycho-social problems and stress for the serving personnel as well as families. Educating staff, integrating palliative care into existing medical services, coordinating with other agencies to increase awareness and provide care at home, access to opioids, timely leave, reimbursement of expenses, increased family accommodation, guidance about benefits, and considerate implementation of transfer policy can help mitigate some of their problems. CONCLUSION: These caregivers face physical exhaustion, psycho-social, financial, legal, and spiritual issues- some common to all rural Indians and others unique to the armed forces. Understanding their experiences will help the providers find solutions, especially in relation to the unique needs of the men in uniform.

Palliative Care in Coronavirus Disease 2019 Pandemic: Position Statement of the Indian Association of Palliative Care.

The global pandemic involving severe acute respiratory syndrome-coronavirus-2 has brought new challenges to clinical practice and care in the provision of palliative care. This position statement of the Indian Association of Palliative Care (IAPC) represents the collective opinion of the experts chosen by the society and reports on the current situation based on recent scientific evidence. It purports to guide all health-care professionals caring for coronavirus disease 2019 (COVID-19) patients and recommends palliative care principles into government decisions and policies. The statement provides recommendations for palliative care for both adults and children with severe COVID-19 illness, cancer, and chronic end-stage organ impairment in the hospital, hospice, and home setting. Holistic care incorporating physical, psychological, social, and spiritual support for patients and their families together with recommendations on the rational use of personal protective equipment has been discussed in brief. Detailed information can be accessed freely from the website of the IAPC http://www.palliativecare.in/. We hope that this position statement will serve as a guiding light in these uncertain times.

Inappropriate referrals at the end of life--the existing Indian scenario.

The Economist Intelligence Unit has ranked India's end-of-life care last out of 40 countries. The lack of orientation towards palliative care, poor communication skills, a disease-focused, curative approach and the unending battle against death-all lead to unrealistic hope in patients and their families. Inappropriate referrals at the end of life are common and result in a lot of avoidable suffering for both the patients and their families. Propagation of clear guidelines to limit inappropriate therapeutic interventions and referrals in patients with limited prognosis is the need of the hour. Awareness, sensitization, education and training in palliative care are urgently required to change attitudes. This would go a long way in mitigating the misery for both the dying and their carers.

Advance Care Planning in India: Current status and future directions. A short narrative review.

India is undergoing economic, demographic and epidemiologic transitions. The healthcare industry is expanding rapidly as the burden of non-communicable diseases increases. The Indian Supreme Court [1] has recently enabled Advance Medical Directives (AMD). Implementation of Advance Care Planning (ACP) will depend on civil society and the palliative care sector until government support is available.

Situational analysis of the quality of palliative care services across India: a cross-sectional survey.

Objective: Palliative care services in India were established in the 1980s but there is no detailed up-to-date knowledge about the quality-of-service provision nationally. We aim to describe the current quality of palliative care provision in India, as measured against nationally adopted standards. Method: A digital survey adapted from the Indian Association of Palliative Care Standards Audit Tool was administered to 250 palliative care centres. Results: Two hundred and twenty-three (89%) palliative care centres participated - 26.4% were government-run, while the rest include non-governmental organisations, private hospitals, community-led initiatives and hospices. About 200 centres 'often' or 'always' fulfilled 16/21 desirable criteria; however, only 2/15 essential criteria were 'often' or 'always' fulfilled. Only 5.8% provide uninterrupted access to oral morphine. Significance of the results: Palliative care centres in India are falling short of meeting the essential quality standards, indicating the urgent need for new initiatives to drive national change.

A tale of two springs.

Palliative care, which is more than just terminal care, is still unknown in most parts of India. This narrative highlights how early integration of palliative medicine can help the patient and their family to make the most of their time together. Besides, excellent clinical acumen is required while looking after the sickest and the most critical patients, proper communication skills, and an ethical and holistic approach enables a good doctor-patient relationship. Good pain relief, symptom control, attention to nursing issues, providing information sensitively to empower patients and families for joint decision making, and advance care planning can help bring about a decent death and bereavement. Healing is brought about not only for the caregivers but also for the healthcare professionals.

They suffer in silence.

All India Institute of Medical Sciences, New Delhi, receives patients from all over India. This narrative describes the suffering of cancer patients who are unable to access pain relief and palliative care at their native places and have to repeatedly travel long distances to get morphine-all because of lack of awareness and availability of palliative care in North India, and the restrictions on availability of morphine due to stringent, outdated narcotic regulations.