The Quality of End of Life Care in India and the Measures Towards Improvement
End of life care is a person-centred approach of care of an individual, at his or her end of life, guided by a personalized perception of “good death” that encompasses all aspects involved in the comprehensive care of that individual. It involves several key features such as (i) applicability to any person, place and illness (ii) relief of physical, psychological, social, spiritual and existential symptoms (iii) dying at the preferred place of choice and receiving appropriate care by a trained health care provider (iv) having universal access to standard palliative care at the end of life and every individual having a right to a good, peaceful, and digniﬁed death. [1-3]
Studies based on family/caregiver interviews of the deceased have revealed that a. Poor control of symptoms b. Incomplete health-related communication c. Lack of trained health care manpower to provide end of life care d. Absence of holistic care e. Wishes of preferred place of death not fulﬁlled f. Impersonal technology laden end of life care and g. Late palliative care referrals, as the important barriers hindering quality end of life care.[4-7]
Studies on hospital end of life care practices have shown that a. Continuation of disease modifying treatments until last weeks of life b. Inappropriate life sustaining interventions c. Patients not referred early enough to palliative and supportive care services and d. Lack of advanced care planning and anticipatory directives for end of life, are some of the key barriers hindering quality end of life care.[8-11]
Gaps in quality end of life care are measured through validated tools such as:
Quality of Death (QOD) Hospice scale
Quality of Death and Dying (QODD)
Care Quality Commission (CQC) review
Family Assessment of Treatment of End of life (FATE)
Quality of End of life Care and Satisfaction with Treatment (QUEST)
Most of these questionnaires are designed to measure perception of quality of end of life care by interviewing family members and caregivers of the deceased. Studying hospital end of life care practices through prospective and retrospective studies are other ways of measuring quality of death. [10,12-15]
Quality of End of Life Care in India
Magnitude of the Problem
According to Global Atlas of Palliative care, palliative and end of life care needed in the Southeast Asia Region (SEAR) is estimated to be around 175-275 per 100,000 population. SEAR constitutes 24% of the world’s palliative and end of life care needs.
The 2015 Quality of Death Index ranking palliative care across the world has ranked India 67th among the 80 countries studied. According to this report, poor quality of end of life care delivery in India is secondary to poor government-led strategy towards national level palliative care, shortage of specialist palliative care providers, limitation of public funds, lack of availability of opioid analgesics, and ﬁnally, poor public awareness about the availability and necessity of palliative and end of life care.
The capacity to deliver palliative and end of life care is scored as 0.6/100, i.e., only 0.4% of the population in India have access to palliative and end of life care. Although morphine is included in the National Essential Medicines (NEM) list, the current morphine and morphine equivalent opioid utilisation in India is <1 milligram (mg) per capita.
A study conducted at Pune showed that 83% of people in India would prefer to die at home. However, due to lack of palliative, end of life care provision, availability of adequate medical home-care or hospice care, these patients receive inappropriate, aggressive medical interventions at end of life which then drain the resources of patients and family.
In India, 80-85% of the population spend out of pocket for their health-related expenses and around 40-60 million families are becoming poorer every year due to rising health-related costs. Most of these costs are related to aggressive medical interventions taking place in the last few days of life. Cost of medical care and non- availability of palliative care at end of life has forced up to 78% of patients in advanced stages of illness to leave the hospital intensive care units against medical advice. Families unilaterally initiate these discharges and as a consequence these discharged patients do not receive any continuation of treatment for symptom relief or care at end of life.
The current legal position in India is only limited passive euthanasia and there is no legal framework or policies backing clinicians on palliative and end of life care. Non-existent national palliative care policy and ambiguous legal positions are the most important detriments for the provision of eﬀective end of life care in India.
Measures that were Initiated to Improve End of Life care
The Indian Association of Palliative Care (IAPC) has collaborated with the Indian Society of Critical Care Medicine (ISCCM) and the Indian Academy of Neurology and constituted the End of Life Care in India Taskforce (ELICIT). This taskforce is working towards creating a robust, ethical, and legal framework for facilitating good end of life care.
In the wake of the 2010 Quality of Death Report by Lien foundation, an end of life care consortium was created in April 2014 to develop and promote end of life care in India. The key objectives were to develop the position statement and policy guidelines, to inﬂuence policy makers and to create end of life care awareness amongst health care providers and the public. In this regard, a position statement and policy guidelines were then published in September 2014.
End of life care awareness programs were initiated across India for training of health care professionals with the initiation of palliative care topics in continuing medical education (CME), courses, and Webinars. The consortium had several meetings with the National Accreditation Board of Hospitals (NABH) and was successful in initiating key changes to the NABH manual with regards to end of end of life care. To facilitate end of life care delivery across India, a foundation course on International Collaborative on “Best care of the dying” was held at the Bangalore Baptist Hospital, Bengaluru in January 2016. Specialists from the Marie Curie Palliative Care Institute (Liverpool) conducted this program. Sixteen institutions involved in palliative care in India attended this course. The aim of this program was to disseminate knowledge and improve end of life care practices across India.
In the wake of the revision of National Accreditation Board of Hospital (NABH) manual, the Quality Council of India invited representatives of the ISCCM and the IAPC to provide inputs for reforming COP 20.0 item of 2011 NABH accreditation manual, which deals with auditing end of life care provided in Indian Hospitals. The representatives of both the societies met the members of quality council of India in July 2015. A questionnaire was subsequently developed based on the IAPC consensus position statement on End of Life Care policy for dying, ISCCM and IAPC joint position statement on End of Life Care policy and NABH COP 20.0 items of NABH Manual (3rd edition). Expert opinions of the members of both ISCCM and IAPC were sought and incorporated.
To provide quality end of life care, it is imperative that the standards of end of life care as recommended by appropriate authorities are implemented and that this implementation process is further monitored by various national and international accreditation agencies. Therefore, National Accreditation Board for Hospitals and Health Care Providers (NABH) COP 19 of the NABH 2016 document was created to facilitate accreditation of hospitals in India. However, most often these policies remain conﬁned to paper and realistically the end of life care practice is never audited. Sadly, this is because the accreditors evaluate only presence of a policy not its implementation or practice. Further, the auditors themselves usually have a very limited knowledge of end of life care and what to evaluate while auditing end of life care practice.
Recently the Indian Council of Medical Research (ICMR) in collaboration with ISCCM, IAPC and ELICIT has initiated the process of creating uniform end of life care deﬁnitions, which will inform the legislators and the courts in formulating unambiguous laws and rulings regarding end of life care. A start has been initiated however we still have a long way to go for India to progress into a nation with advanced palliative care.
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