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.

Definition of Terms Used in Limitation of Treatment and Providing Palliative Care at the End of Life: The Indian Council of Medical Research Commission Report.

BACKGROUND: Indian hospitals, in general, lack policies on the limitation of inappropriate life-sustaining interventions at the end of life. To facilitate discussion, preparation of guidelines and framing of laws, terminologies relating to the treatment limitation, and providing palliative care at the end-of-life care (EOLC) need to be defined and brought up to date. METHODOLOGY: This consensus document on terminologies and definitions of terminologies was prepared under the aegis of the Indian Council of Medical Research. The consensus statement was created using Nominal Group and Delphi Method. RESULTS: Twenty-five definitions related to the limitations of treatment and providing palliative care at the end of life were created by reviewing existing international documents and suitably modifying it to the Indian sociocultural context by achieving national consensus. Twenty-five terminologies defined within the scope of this document are (1) terminal illness, (2) actively dying, (3) life-sustaining treatment, (4) potentially inappropriate treatment, (5) cardiopulmonary resuscitation (CPR), (6) do not attempt CPR, (7) withholding life-sustaining treatment, (8) withdrawing life-sustaining treatment, (9) euthanasia (10) active shortening of the dying process, (11) physician-assisted suicide, (12) palliative care, (13) EOLC, (14) palliative sedation, (15) double effect, (16) death, (17) best interests, (18) health-care decision-making capacity, (19) shared decision-making, (20) advance directives, (21) surrogates, (22) autonomy, (23) beneficence, (24) nonmaleficence, and (25) justice.

Feasibility and Acceptability of Implementing the Integrated Care Plan for the Dying in the Indian Setting: Survey of Perspectives of Indian Palliative Care Providers.

INTRODUCTION: Capacity to provide end-of-life care in India is scored as 0.6/100, and very few people in India have access to palliative and end-of-life care. Lack of end-of-life care provision in India has led to a significant number of people receiving inappropriate medical treatment at the end of life, with no access to pain and symptom control and high treatment costs. The International Collaborative for the Best Care for the Dying Person is an initiative that offers the opportunity to apply international evidence on the key factors required to provide best care for the dying in the Indian context. The aim of this study is to ascertain the perceptions of Indian palliative care providers regarding the feasibility and acceptability of implementing the international program in the Indian setting. METHODS: Thirty participants from 16 palliative care centers who had participated in the foundation course of the International Collaborative for Best Care for the Dying Person were purposively chosen for the study. All participants were asked to complete the survey questionnaire that had both open- and close-ended questions. RESULTS: Twenty-three participants completed this survey. The majority of items in the international program were considered relevant, representative of end-of-life care and acceptable in Indian setting. However, participants felt that the concept of the multidisciplinary team (MDT) being responsible for recognizing death may not be possible in the existing Indian setting and a senior doctor may not always be available to document a MDT decision. Some participants felt that in the Indian setting, it was not always possible to communicate about the dying process and make patient aware of the same. A small number of participants felt that using leaflets for communicating end-of-life care process may not be always possible due to logistic reasons and cost. Six participants felt that giving the dying person the opportunity to discuss their wishes, feelings, faith, beliefs, and values may not be possible, representative, and not applicable in Indian setting. The majority of participants felt that using equipment such as a syringe driver for continuous infusion is relevant (n = 16) and representative (n = 13) of end-of-life care, however most thought that it could be challenging to apply in an Indian setting (n = 17), including concerns about lack of familiarity and knowledge and applicability in home care settings. Six participants had reservations regarding the limitation of life-sustaining treatment and felt that discussion and review of cardiopulmonary resuscitation should happen prior to patients entering their end-of-life phase. While most participants thought relevance, representation, and applicability of assessing skin integrity as important, a few participants felt this assessment challenging, especially in home setting, and recommended Braden scale to be used instead of Waterlow for assessing skin integrity. Most participants agreed on the importance of assisted hydration and nutrition; however, again a minority highlighted challenges in this area. Five participants felt that they would sometimes continue hydration under duress from a patient's family. Participants agreed unanimously on the relevance and representation of recording of physical symptoms by MDT-initial and ongoing-with a few participants indicating that frequent observations recommended in the care plan may not be feasible in home care setting. The majority also agreed on the relevance, representation (n = 21), and applicability (n = 18) of providing written information about after-death care, with a small number indicating challenges in the Indian setting, for example, very few unit currently having this information available (n = 2). Notifying general practitioners, primary care physicians, and other appropriate services on patients' death may not be easily applicable in the Indian setting. CONCLUSIONS: The survey of palliative care providers about the feasibility and acceptability of integrated care plan at end of life has shown that the international program is relevant, representative of end-of-life care, and acceptable in Indian setting. As would be expected, a number of items need careful consideration and appropriate modification to ensure relevance, representation, and applicability to Indian sociocultural context. The results also suggest that palliative care providers need additional training for the implementation of some of the items in the development of an India-specific document and supporting quality improvement program.

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.

Moving toward a national policy on palliative and end of life care.

Indian Palliative Care has developed over the past 17 years but it has also developed disabilities due to lack of a National Policy and hence has compromised its effectiveness. It is true that we have come a long way but we still have many miles to go and we will get there only if we have a proper road map and sign posts. This article attempts to suggest some specific measures in establishing such a National Policy.