The Quality of End of Life Care in India and the Measures Towards Improvement

Article by

N. Salins

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.[16] 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.[17] 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.[18]

A study conducted at Pune showed that 83% of people in India would prefer to die at home.[19] 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.[20]

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.[21]  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.[22]  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.[23]

 

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[24] and policy guidelines[25] 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,[25] ISCCM and IAPC joint position statement on End of Life Care policy[25] 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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