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.

Cancer research in India: national priorities, global results.

Over the past 20 years, cancer research in India has grown in size and impact. Clinicians, scientists, and government and state policy makers in India have championed cancer research, from studies to achieve low-tech, large-scale health outcomes to some of the most advanced areas of fundamental cancer science. In this paper, we frame public policy discussions about cancer with use of an in-depth analysis of research publications from India. Cancer research in India is a complex environment that needs to balance public policy across many competing agendas. We identify major needs across these environments such as those for increased research capacity and training and protected time for clinical researchers; for more support from states and enhanced collaborative funding programmes from government; for development of national infrastructures across a range of domains (ie, clinical trials, tissue banking, registries, etc); and for a streamlined and rational regulatory environment. We also discuss improvements that should be made to translate research into improvements in cancer outcomes and public health.

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.

Preference of the place of death among people of pune.

AIM: Provision of end-of-life care requires that we have adequate information about the preferred place of death in the population. Since no such study is reported in India, this study was taken up in and around Pune, a large cosmopolitan city. SETTING AND DESIGN: A questionnaire was designed in three parts and distributed among the people above the age of 18 in and around Pune. MATERIALS AND METHODS: The questionnaire had three parts the first being a consent form, followed by one for collection of personal information and lastly questions specific to the subject matter. Filled forms were screened for inconsistencies, gaps of information and errors. RESULTS: The population survey was mixed, both urban and rural, men and women, educated and uneducated, young and old. Despite this heterogeneity, the results were consistent to the point that most of the people surveyed preferred home as the place of death. This preference cuts across all barriers, the only difference being that women had a stronger preference for home death compared to men. CONCLUSIONS: Helping people to die at their preferred place is a part of end-of-life care. Majority of people surveyed by us, prefer to die at home, where they are relatively more comfortable. Public and governmental policies should be directed toward facilitating home deaths.

Stress among Care Givers: The Impact of Nursing a Relative with Cancer.

AIMS: The aim of the present study is to assess the level and areas of stress among care givers nursing their loved ones suffering from cancer. SETTING AND DESIGN: An assessment of care givers' stress providing care to cancer patients at Cipla Palliative Care Center was conducted. The study involves data collection using a questionnaire and subsequent analysis. MATERIALS AND METHODS: A close-ended questionnaire that had seven sections on different aspects of caregivers' stress was developed and administered to 137 participants and purpose of conducting the survey was explained to their understanding. Caregivers who were willing to participate were asked to read and/or explained the questions and requested to reply as per the scales given. Data was collected in the questionnaires and was quantitatively analyzed. RESULTS: The study results showed that overall stress level among caregivers is 5.18 ± 0.26 (on a scale of 0-10); of the total, nearly 62% of caregivers were ready to ask for professional help from nurses, medical social workers and counselors to cope up with their stress. CONCLUSION: Stress among caregivers ultimately affects quality of care that is being provided to the patient. This is also because they are unprepared to provide care, have inadequate knowledge about care giving along with financial burden, physical and emotional stress. Thus interventions are needed to help caregivers to strengthen their confidence in giving care and come out with better quality of care.

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.

Integration of care with cure in cancer.

Quality of life is as important as quantity of life, if not more. In some life-threatening diseases, the possibility of cure is sometimes poor, and symptoms of the disease reduce the quality of life too. Improvement of symptoms helps the patients to live more comfortably while allowing them to retain their autonomy and dignity despite the life-threatening disease. The total care of such patients, helping them to live as well as possible in spite of their symptoms forms the basis of palliative care. Palliative care is an upcoming discipline, which aims to provide comfort to patients suffering from severe disease-related discomfort. It is not end-of-life support, as previously thought but is recommended to be integrated with therapy right from diagnosis. Studies conducted overseas show that when introduced early, palliative care leads to better outcomes of curative therapies, while making the patient comfortable and pain-free. There are different models and methods of delivery of palliative care and the involvement of family in the care of the patient produces the best outcome. Palliative care can be delivered both at a dedicated centre as well as at the patient's home, depending on the preferences of the patient. This paper discusses the efforts towards providing care for patients in different stages of cancer therapy.