Indian Association Of Palliative Care Research Articles

Joint Position Statement between Indian Association of Palliative Care and Indian Association of Preventive and Social Medicine - A Collaborative Effort to Expand Primary Palliative Care throughout the Country.

Joint Position Statement between Indian Association of Palliative Care and Indian Association of Preventive and Social Medicine - A Collaborative Effort to Expand Primary Palliative Care throughout the Country.

Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra - Children's Palliative Care Project in India.

Objectives:To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID.Materials and Methods:The CPC project was a 5-year service development project (April 2010–March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children’s Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC.Results:The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level.Conclusion:The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.

Developing a Screening Tool for Serious Health-related Suffering for Low- and Middle-Income Countries – Phase-1: Domain Identification and Item Generation

Objectives:The Lancet Commission on Global Access to Palliative Care and Pain Relief reported significant levels of health-related suffering globally, with the highest incidence in the low- and middle-income countries. The report describes suffering as health-related when it is associated with illness or injury of any kind and suffering as serious when it cannot be relieved without professional intervention and when it compromises physical, social, spiritual, and/or emotional functioning. This paper describes the preliminary development phase of a tool for screening Serious Health-related Suffering (SHS) at individual patient level, suitable to the healthcare settings in India. The study was conducted by the National Cancer Grid-India, with support from the Indian Association of Palliative Care.Materials and Methods:Domain identification and item generation were conducted according to the recommendations for tool development by the American Psychological Association and World Health Organisation quality of life instrument. The consensus for domain questions and associated items was achieved using Delphi, nominal group technique, expert review, and polling.Results:The Phase-1 study for developing the screening tool for SHS contextualised to resource-limited settings generated a bilevel questionnaire. The initial level assesses and scores the physical, emotional, social, spiritual, and financial domains of health-related suffering. The next level assesses seriousness, through functional limitation and patient’s preference.Conclusion:The generation of domains, items, and screening questions for health-related suffering and its seriousness completes the preliminary phase of developing the SHS screening tool applicable to a resource-limited healthcare setting. Field testing of the tool is being conducted as Phase-2 of this study, to validate it in clinical settings.

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.

Indian Society for Study of Pain, Cancer Pain Special Interest Group Guidelines, for the Diagnosis and Assessment of Cancer Pain.

The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group (SIG) guidelines, for the diagnosis and assessment of cancer pain in adults provide a structured, step-wise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs of patient population and situations in India. A questionnaire based on the key elements of each sub draft addressing certain inconclusive areas where evidence was lacking, was made available on the ISSP website and circulated by E-mail to all the ISSP and Indian Association of Palliative Care (IAPC) members. We recommend that a comprehensive pain assessment of all the patients should be conducted before initiating treatment. The patients should be educated about all the available pain control interventions. For assessing cancer pain, unidimensional tools such as Numeric Rating Scale, Visual Analog Scale, and Visual Rating Scale should always be used routinely. Patients with cancer pain should routinely be screened for distress and other psychological disorders, using the Patient Health Questionnaire-9. The most reliable assessment of pain is patients' self-reporting.

Indian Society for Study of Pain, Cancer Pain Special Interest Group Guidelines on Pharmacological Management of Cancer Pain (Part I).

The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group guidelines on pharmacological management of cancer pain in adults provides a structured, step-wise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs, patient population, and situations in India. A questionnaire based on the key elements of each sub drafts addressing certain inconclusive areas where evidence was lacking, was made available on the ISSP website, and circulated by E-mail to all the ISSP and Indian Association of Palliative Care (IAPC) members. We recommend that analgesics for cancer pain management should follow the World Health Organization three-step analgesic ladder appropriate for the severity of pain. The use of paracetamol and nonsteroidal anti-inflammatory drugs alone or in combination with opioids for mild-to-moderate pain should be used. For mild-to-moderate pain, weak opioids such as tramadol, tapentadol, and codeine can be given in combination with nonopioid analgesics. We recommend morphine as the opioid of first choice for moderate-to-severe cancer pain.

Indian Society for Study of Pain, Cancer Pain Special Interest Group Guidelines on Palliative Care Aspects in Cancer Pain Management.

The Indian Society for Study of Pain (ISSP), Cancer Pain Special Interest Group guidelines on palliative care aspects in cancer pain in adults provide a structured, stepwise approach which will help to improve the management of cancer pain and to provide the patients with a minimally acceptable quality of life. The guidelines have been developed based on the available literature and evidence, to suit the needs, patient population, and situations in India. A questionnaire based on the key elements of each sub draft addressing certain inconclusive areas where evidence was lacking was made available on the ISSP website and circulated by E-mail to all the ISSP and Indian Association of Palliative Care (IAPC) members. In a cancer care setting, approaches toward managing pain vary between ambulatory setting, home care setting, acute inpatient setting, and end-of-life care in hospice setting. We aim to expound the cancer pain management approaches in these settings. In an ambulatory palliative care setting, the WHO analgesic step ladder is used for cancer pain management. The patients with cancer pain require admission for acute inpatient palliative care unit for poorly controlled pain in ambulatory and home care settings, rapid opioid titration, titration of difficult drugs such as methadone, acute pain crisis, pain neuromodulation, and pain interventions. In a palliative home care setting, the cancer pain is usually assessed and managed by nurses and primary physicians with a limited input from the specialist physicians. In patients with cancer at the end of life, the pain should be assessed at least once a day. Moreover, physicians should be trained in assessing patients with pain who are unable to verbalize or have cognitive impairment.

Primary palliative care competency framework for primary care and family physicians in India-Collaborative work by Indian Association of Palliative Care and Academy of Family Physicians of India.

The discrepancy in the demand for palliative care and distribution of specialist palliative care services will force patients to be eventually cared for by primary care/family physicians in the community. This will necessitate primary care/family physicians to equip themselves with knowledge and skills of primary palliative care. Indian National Health Policy (2017) recommended the creation of continuing education programs as a method to empower primary care/family physicians. With this intention, a taskforce was convened for incorporating primary palliative care into family/primary care practice. The taskforce comprising of National and International faculties from Palliative Care and Family Medicine published a position paper in 2018 and subsequently brainstormed on the competency framework required for empowering primary care/family physicians. The competencies were covered under the following domains: knowledge, skills and attitude, ethical and legal aspects, communication and team work. The competency framework will be presented to the National Board of Examinations recommending to be incorporated in the DNB curriculum for Family Medicine.

1764P - A survey on acceptable nomenclature in addressing patient needs among the delegates of a national conference on supportive medicine

Background: The scope and ambit of services offered in an integrated inpatient palliative medicine unit located in tertiary cancer centre is explored through various questions pertaining to multiple domains encompassing clinical management of advanced cancer patients. The survey tests the attitudes of the respondents while laying the foundation of building and sustaining a novel model where Supportive cancer care services, Pain management and Palliative medicine interventions (including End of life care) are offered as part of a continuum. Methods: The survey was carried out among the registered delegates of the annual national conference of the Indian Association of Palliative Care. Results: 48 percent (84/175) felt that Palliative medicine and Supportive oncology are mutually exclusive domains in patient management. 40 percent (71/175) agreed that the terms Palliative medicine and Palliative care are different entities in patient management. 47 percent (96/203) agreed that the term Palliative medicine should be substituted by Supportive medicine while only 22 percent (38/172) agreed that using the term Supportive oncology would be justified in place of Palliative medicine. 34 percent (59/169) felt that substitution of the term Palliative medicine by Supportive oncology might remove the stigma associated with the referral of the patient to avail these services. Conclusions: These results reflect the multiplicity of views which underlie existing divergent schools of thought in this nascent subspeciality. An indigenous academic model based on the premise of closeknit integration of supportive care and medical oncology which dispels the myth of pure palliation as a segregated entity is the need of the hour. The services offered should reflect the understanding that recognition and management of supportive care needs of cancer patients is of utmost important in making the model economically viable and socially sustainable. Legal entity responsible for the study: Rahul D. Arora. Funding: Has not received any funding. Disclosure: The author has declared no conflicts of interest.

Joint position statement Indian Association of Palliative Care and Academy of Family Physicians of India - The way forward for developing community-based palliative care program throughout India: Policy, education, and service delivery considerations.

Purpose:This joint position statement, by the Indian Association of Palliative Care (IAPC) and Academy of Family Physicians of India (AFPI), proposes to address gaps in palliative care provision in the country by developing a community-based palliative care model that will empower primary care physicians to provide basic palliative care.Evidence:India ranks very poorly, 67th of 80 countries in the quality of death index. Two-thirds of patients who die need palliative care and many such patients spend the last hours of life in the Intensive care unit. The Indian National Health Policy (NHP) 2017 and other international bodies endorse palliative care as an essential health-care service component. NHP 2017 also recommends development of distance and continuing education options for general practitioners to upgrade their skills to provide timely interventions and avoid unnecessary referrals.Methods:A taskforce was formed with Indian and International expertise in palliative care and family medicine to develop this paper including an open conference at the IAPC conference 2017, agreement of a formal liaison between IAPC and AFPI and wide consultation leading to the development of this position paper aimed at supporting integration, networking, and joint working between palliative care specialists and generalists. The WHO model of taking a public health approach to palliative care was used as a framework for potential developments; policy support, education and training, service development, and availability of appropriate medicines.Recommendations:This taskforce recommends the following (1) Palliative care should be integrated into all levels of care including primary care with clear referral pathways, networking between palliative care specialist centers and family medicine physicians and generalists in community settings, to support education and clinical services. (2) Implement the recommendations of NHP 2017 to develop services and training programs for upskilling of primary care doctors in public and private sector. (3) Include palliative care as a mandatory component in the undergraduate (MBBS) and postgraduate curriculum of family physicians. (4) Improve access to necessary medications in urban and rural areas. (5) Provide relevant in-service training and support for palliative care to all levels of service providers including primary care and community staff. (6) Generate public awareness about palliative care and empower the community to identify those with chronic disease and provide support for those choosing to die at home.

Dedicated researcher brings cancer care to rural communities

Dedicated researcher brings cancer care to rural communities

23(rd) International Conference of Indian Association of Palliative Care.

23(rd) International Conference of Indian Association of Palliative Care.

End-of-life care policy: An integrated care plan for the dying.

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.

Awareness of palliative care among doctors of various departments in all four teaching medical colleges in a metropolitan city in Eastern India: A survey.

Objective:To enquire about the level of awareness regarding various important aspects of palliative medicine among doctors of various departments in four Medical Colleges in Kolkata through a questionnaire.Materials and Methods:A questionnaire was developed by few members of Indian Association of Palliative Care. It was distributed, to a convenience sample of doctors who worked at various departments in all four teaching hospitals in Kolkata. The distribution and collection of questionnaires was carried out within four months.Results:The results suggested that 85% of the doctors felt that cancer was the commonest reason for the palliative care teams to be involved. Seventy four percent of the doctors mentioned that pain control was their prime job; 53% said that they are enjoying their encounter with palliative care, so far; 77% of the doctors thought breaking bad news is necessary in further decision making process; only 22% of the doctors reported the WHO ladder of pain control sequentially, 35% of the doctors believed other forms of therapies are useful in relieving pain, 35% of the doctors thought that they gave enough importance and time for pain control; 77% said that they had heard about a hospice, among them still 61% of the doctors thought that the patients should spend last days of their life at home. Thinking of the future, 92% of the doctors think that more and more people will need palliative care in the coming days.Conclusion:Amongst the doctors of various departments, there is a lack of training and awareness in palliative care. Almost all the doctors are interested and they are willing to have more training in pain control, breaking bad news, communication skills and terminal care.

Challenges in the implementation of "end-of-life care" guidelines in India: How to open the "Gordian Knot"?

Challenges in the implementation of "end-of-life care" guidelines in India: How to open the "Gordian Knot"?

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.

EXECUTIVE SUMMARYPurpose: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.

Coming together to care for the dying in India.

Coming together to care for the dying in India.

Awareness of palliative care among doctors of various departments in all the four teaching medical colleges in a metropolitan city in Eastern India: A survey

Objective: To enquire about the level of awareness regarding various important aspects of palliative medicine among doctors of various departments in four medical colleges in Kolkata through a questionnaire. Materials and Methods: A questionnaire was developed by few members of Indian Association of Palliative Care. It was distributed, to a convenience sample of doctors who worked in various departments in all four teaching hospitals in Kolkata. The distribution and collection of questionnaires was carried out within 4 months. Results: The results suggested that 85% doctors felt that cancer was the commonest reason for the palliative care teams to be involved. Seventy four percent mentioned that pain control was their prime job; 53% said that they are enjoying their encounter with palliative care, so far; 77% thought breaking bad news is necessary in further decision making process; only 22% reported the WHO ladder of pain control sequentially, 35% believed other forms of therapies are useful in relieving pain, 35% thought they give enough importance and time for pain control; 77% said that they had heard about a hospice, among them still 61% thought patients should spend last days of their life at home. Thinking of the future, 92% of the doctors think more and more people will need palliative care in the coming days. Conclusion: Amongst doctors of various departments, there is a lack of training and awareness in palliative care. Almost all the doctors are interested and they are willing to have more training in pain control, breaking bad news, communication skills and terminal care.

Addendum to the previous article: A position statement by Indian association of palliative care

Addendum to the previous article: A position statement by Indian association of palliative care