Palliative and end-of-life care practices for critically ill patients and their families in a peri-intensive care setting: A protocol for an umbrella review.

OBJECTIVES: This umbrella review will summarize palliative and end-of-life care practices in peri-intensive care settings by reviewing systematic reviews in intensive care unit (ICU) settings. Evidence suggests that integrating palliative care into ICU management, initiating conversations about care goals, and providing psychological and emotional support can significantly enhance patient and family outcomes. METHODS: The Joanna Briggs Institute (JBI) methodology for umbrella reviews will be followed. The search will be carried out from inception until 30 September 2023 in the following databases: Cochrane Library, SCOPUS, Web of Science, CINAHL Complete, Medline, EMBASE, and PsycINFO. Two reviewers will independently conduct screening, data extraction, and quality assessment, and to resolve conflicts, adding a third reviewer will facilitate the consensus-building process. The quality assessment will be carried out using the JBI Critical Appraisal Checklist. The review findings will be reported per the guidelines outlined in the Preferred Reporting Items for Overviews of Reviews statement. RESULTS: This umbrella review seeks to inform future research and practice in critical care medicine, helping to ensure that end-of-life care interventions are optimized to meet the needs of critically ill patients and their families.

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.

Simplified Legal Procedure for End-of-life Decisions in India: A New Dawn in the Care of the Dying?

Recent amendments to the onerous legal procedure laid down in the Landmark Supreme Court Judgment Common Cause vs The Union of India have aroused widespread interest. The new procedural guidelines of January 2023 appear workable and should ease ethical decision-making toward the end-of-life in India. This commentary provides the backdrop to the evolution of legal provisions for advance directives, withdrawal, and withholding decisions in terminal care. How to cite this article: Mani RK, Simha S, Gursahani R. Simplified Legal Procedure for End-of-life Decisions in India: A New Dawn in the Care of the Dying? Indian J Crit Care Med 2023;27(5):374-376.

Organ Donation after Circulatory Determination of Death in India: A Joint Position Paper.

Organ donation following circulatory determination of death (DCDD) has contributed significantly to the donor pool in several countries. In India, majority of deceased donations happen following brain death (BD). While existing legislation allows for DCDD, there have been only few reports of kidney transplantation following DCDD from India. This document, prepared by a multidisciplinary group of experts, reviews international best practices in DCDD and outlines the path for DCDD in India. Ethical, medical, legal, economic, procedural, and logistic challenges unique to India have been addressed. The practice of withdrawal of life-sustaining treatment (WLST) in India, laid down by the Supreme Court of India, is time-consuming, possible only in patients in a permanent vegetative state, and too cumbersome for day-to-day practice. In patients where continued medical care is futile, the procedure for WLST is described. In controlled DCDD (category-III), decision for WLST is independent of and delinked from the subsequent possibility of organ donation. Families that are inclined toward organ donation are explained the procedure including the timing and location of WLST, consent for antemortem measures, no-touch period, and the possibility of stand-down and return to the intensive care unit (ICU) without donation. In donation following neurologic determination of death (DNDD), if cardiac arrest occurs during the process of BD declaration, the protocol for DCDD category-IV has been described in detail. In DCDD category-V, organ donation may be possible following unsuccessful cardiopulmonary resuscitation of cardiac arrest in the ICU. An outline of organ-specific requisites for kidney, liver, heart, and lung transplantation following DCDD and techniques, such as normothermic regional perfusion (nRP) and ex vivo machine perfusion, has been provided. The outcomes of transplantation following DCDD are comparable to those following DBDD or living donor transplantation. Documents and checklists necessary for successful execution of DCDD in India are described. How to cite this article: Seth AK, Mohanka R, Navin S, Gokhale AGK, Sharma A, Kumar A, et al. Organ Donation after Circulatory Determination of Death in India: A Joint Position Paper. Indian J Crit Care Med 2022;26(4):421-438.

Why is hospice care important? An exploration of its benefits for patients with terminal cancer.

BACKGROUND: Palliative care has proven over time that it can help prolong life spans with the use of hospices. The literature reports that most patients with cancer are diagnosed in the later stages and since there is no cure, they will require palliative care at some point during their illness. However, most developing countries, including India, have failed to establish hospices; as a result, large numbers of cancer patients are still deprived of palliative care. To initiate better access to hospices, it is important to understand the benefits of the same. Therefore, the present study aims to explore the advantages of hospice care from the perspectives of advanced cancer patients living in hospice centres. METHODS: The present study uses the method of exploratory research. Using purposive sampling, 8 participants living in a hospice in Bengaluru, India were selected and semi-structured interviews were conducted to collect data from the patients. This data was analysed using thematic analysis. Any underlying patterns were determined to identify the evident themes that emerged from the data. RESULTS: After thematic analysis, 4 themes were identified, namely, pain management, altruism, a good death, and overall satisfaction. Within some themes, there were specific sub-themes that have been illustrated using direct quotes from the interviews. CONCLUSION: The findings of this study suggest that hospice centres play an important role in helping patients to come out of the trauma during the advanced stages of cancer. A sense of relief can be given to the patient by implementing palliative care. This is possible by building more hospice centres in the country where all individuals, irrespective of their financial status, can opt for the service. Having palliative care will provide dignified death to the patients.

Symptom Management and Supportive Care of Serious COVID-19 Patients and their Families in India.

Coronavirus disease-19 (COVID-19) pandemic is causing a worldwide humanitarian crisis. Old age, comorbid conditions, end-stage organ impairment, and advanced cancer, increase the risk of mortality in serious COVID-19. A subset of serious COVID-19 patients with serious acute respiratory illness may be triaged not to receive aggressive intensive care unit (ICU) treatment and ventilation or may be discontinued from ventilation due to their underlying conditions. Those not eligible for aggressive ICU measures should receive appropriate symptom management. Early warning scores (EWS), oxygen saturation, and respiratory rate, can facilitate categorizing COVID-19 patients as stable, unstable, and end of life. Breathlessness, delirium, respiratory secretions, and pain, are the key symptoms that need to be assessed and palliated. Palliative sedation measures are needed to manage intractable symptoms. Goals of care should be discussed, and advance care plan should be made in patients who are unlikely to benefit from aggressive ICU measures and ventilation. For patients who are already in an ICU, either ventilated or needing ventilation, a futility assessment is made. If there is a consensus on futility, a family meeting is conducted either virtually or face to face depending on the infection risk and infection control protocol. The family should be sensitively communicated about the futility of ICU measures and foregoing life-sustaining treatment. Family meeting outcomes are documented, and consent for foregoing life-sustaining treatment is obtained. Appropriate symptom management enables comfort at the end of life to all serious COVID-19 patients not receiving or not eligible to receive ICU measures and ventilation. How to cite this article: Salins N, Mani RK, Gursahani R, Simha S, Bhatnagar S. Symptom Management and Supportive Care of Serious COVID-19 Patients and their Families in India. Indian J Crit Care Med 2020;24(6):435-444.

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.

End-of-life care policy: An integrated care plan for the dying: A Joint Position Statement of the Indian Society of Critical Care Medicine (ISCCM) and the Indian Association of Palliative Care (IAPC).

PURPOSE: The purpose was to develop an end-of-life care (EOLC) policy for patients who are dying with an advanced life limiting illness and to develop practical procedural guidelines for limiting inappropriate therapeutic medical interventions and improve the quality of care of the dying within an ethical framework and through a professional and family/patient consensus process. EVIDENCE: The Indian Society of Critical Care Medicine (ISCCM) published its first guidelines on EOLC in 2005 [1] which was later revised in 2012.[2] Since these publications, there has been an exponential increase in empirical information and discussion on the subject. The literature reviewed observational studies, surveys, randomized controlled studies, as well as guidelines and recommendations, for education and quality improvement published across the world. The search terms were: EOLC; do not resuscitate directives; withdrawal and withholding; intensive care; terminal care; medical futility; ethical issues; palliative care; EOLC in India; cultural variations. Indian Association of Palliative Care (IAPC) also recently published its consensus position statement on EOLC policy for the dying.[3]. METHOD: An expert committee of members of the ISCCM and IAPC was formed to make a joint EOLC policy for the dying patients. Proposals from the chair were discussed, debated, and recommendations were formulated through a consensus process. The members extensively reviewed national and international established ethical principles and current procedural practices. This joint EOLC policy has incorporated the sociocultural, ethical, and legal perspectives, while taking into account the needs and situation unique to India.

End of life care policy for the dying: consensus position statement of Indian association of palliative care.

PURPOSE: To develop an End of Life Care (EOLC) Policy for patients who are dying with an advanced life limiting illness. To improve the quality of care of the dying by limiting unnecessary therapeutic medical interventions, providing access to trained palliative care providers, ensuring availability of essential medications for pain and symptom control and improving awareness of EOLC issues through education initiatives. EVIDENCE: A review of Country reports, observational studies and key surveys demonstrates that EOLC in India is delivered ineffectively, with a majority of the Indian population dying with no access to palliative care at end of life and essential medications for pain and symptom control. Limited awareness of EOLC among public and health care providers, lack of EOLC education, absent EOLC policy and ambiguous legal standpoint are some of the major barriers in effective EOLC delivery. RECOMMENDATIONS: Access to receive good palliative and EOLC is a human right. All patients are entitled to a dignified death. Government of India (GOI) to take urgent steps towards a legislation supporting good EOLC, and all hospitals and health care institutions to have a working EOLC policyProviding a comprehensive care process that minimizes physical and non physical symptoms in the end of life phase and ensuring access to essential medications for pain and symptom controlPalliative care and EOLC to be part of all hospital and community/home based programsStandards of palliative and EOLC as established by appropriate authorities and Indian Association of Palliative Care (IAPC) met and standards accredited and monitored by national and international accreditation bodiesAll health care providers with direct patient contact are urged to undergo EOLC certification, and EOLC training should be incorporated into the curriculum of health care education.

Spiritual concerns in hindu cancer patients undergoing palliative care: a qualitative study.

AIMS: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. MATERIALS AND METHODS: THE METHODOLOGY USED WAS A QUALITATIVE METHOD: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. RESULTS: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. CONCLUSIONS: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care.

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.

Stakeholder engagement as a strategy to enhance palliative care involvement in intensive care units: A theory of change approach.

BACKGROUND: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in ICU through a stakeholder participatory approach. METHODS: Theory of Change approach was used to develop a hypothetical causal pathway for palliative care integration into ICUs in India. Four facilitated workshops and fifteen research team meetings were conducted virtually over three months. Thirteen stakeholders were purposively chosen, and three facilitators conducted the workshops. Data included workshop discussion transcripts, online chat box comments, and team meeting minutes. These were collected, analysed and represented as theory of change map. RESULTS: The desired impact of palliative care integration was good death. Potential long-term outcomes identified were fewer deaths in ICUs, discharge against medical advice, and inappropriate admissions; increased referrals to palliative care; and improved patient and family satisfaction. Twelve preconditions were identified, and eleven key interventions were developed. Five overarching assumptions related to contextual factors influencing the outcomes of interventions. CONCLUSION: Theory of change framework facilitated the identification of proposed mechanisms and interventions underpinning palliative care integration in ICUs.

Palliative Care in India: Past, Present, and Future.

Over the last 4 decades, palliative care in India had steady growth and development from the early hospice movement in the 1980s to specialist and subspecialist palliative medicine in the 2020s. In the first decade, sustainable service delivery by capacity building, novel contextual community networking models, education facilitated by international collaboration, efforts towards opioid access, and nationwide networking through the formation of an association kindled the grand beginning of palliative care in India. Over the next 2 decades, palliative care in India evolved and developed as a speciality, disseminated across the nation, found its place in all clinical settings, engaged with specialities and subspecialities, developed its own specialist training program, and focused on indigenous research enabled through its own journal. Furthermore, end-of-life care awareness, training, advocacy, and initiatives towards policy and legislation reaped huge dividends in terms of improving the quality of dying in India. Generalist training through short and intermediate courses enhanced the knowledge and interest of the primary health care providers and non-palliative care specialists and education through international collaboration both in-person and distance learning modes augmented these efforts. In 2019, most elements of palliative care are part of the undergraduate medical curriculum. Policy initiatives by state and central governments and the inclusion of palliative care in the National Health Policy of 2017 offer hope for the future. In the last decade, we think that palliative care has found its footing and is ready to emerge as one of the dominant clinical specialities. Moreover, it is time for it to broaden its horizon, scope, and realm by developing into subspecialist verticals, being ubiquitous in all clinical spaces, focusing on robust evidence-based approach and research grounded in the Indian practice context.

Palliative and end-of-life care in intensive care units in low- and middle-income countries: A systematically constructed scoping review.

PURPOSE: Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries MATERIALS AND METHODS: Scoping review with nine databases systematically searched for literature published in English on palliative care in intensive care units in low- and middle- income settings (01/01/1990 to 31/05/2021). Two reviewers independently checked search results and extracted textual data, which were analyzed and represented as themes. RESULTS: Thirty papers reported 19 empirical studies, two clinical case reports and six discussion papers. Papers originated from Asia and Africa, primarily using observational designs and qualitative approaches, with no trials or other robust evaluative or comparative studies. No studies directly sought data from patients or families. Five areas of research focus were identified: withholding and withdrawing treatment; professional knowledge and skills; patient and family views; culture and context; and costs of care. CONCLUSIONS: Palliative care in intensive care units in low-and middle-income countries is understudied. Research focused on the specific needs of intensive care in low- and middle-income countries is required to ensure optimal patient outcomes.

DNAR Guidelines from ICMR: Meeting a felt need.

We note with interest Dr Olinda Timms' comments (1) on the Indian Council of Medical Research (ICMR) guidelines for Do-not-Attempt-Resuscitation (DNAR) published recently (2), and thank her for raising some pertinent issues.