Compassionate and palliative care relate to the quality of the process of dying. After suffering their absence during and after a deeply grievous demise, I belatedly explored the literature on India by both international and Indian researchers, after my broaching the subject produced disinterest and disdain from the doctors who I spoke to. No wonder; little has been achieved in practice due to lack of Budget allocation despite the recognition and subsequent introduction of selective public policy. In a 2015 Economist Intelligence Unit (EIU) study of end of life care (EOLC) services comparing 30 advanced and 10 developing countries, India was ranked 40th in the quality of death.
Various authors coincide in defining compassionate care as the provision of medical, health and social care services with compassion, derived from the roots passio (suffering) and com (with) - or, to suffer with another. Studies reveal that compassion could to be taught and has advanced significantly as an area of interest in the UK. It recognises a set of values - care, compassion, competence, communication, courage, commitment - and actions - leadership, positive approach and appropriate skills for working with people, and providing high quality care, all of this while ensuring the independence of service users, or patients. It encompasses locations comprehensively - communities, people's homes, doctors' offices, hospitals, hospices - and roles - nurses, midwifes, doctors, physiotherapists, health assistants, administrators, managers - and outcomes - health and wellbeing of all population segments, particularly the elderly. The result of research, policy relevant discussion, policy formulation and meticulous application is that in 2010, the EIU ranked the UK first in a quality of death index.
There is little discussion, leave alone policy, in India on compassionate care. A fledgling attempt was made by Delhi's Medical Humanities Group of University College of Medical Sciences (UCMS) which organised a workshop on compassionate care in May 2015 with a lecture from Greenwich University, UK. The aim was to encourage compassion and its practical application in health care; but its recognition or inclusion has not moved forward reflecting internet information.
Palliative care, discussed by Dr Carlos J Moreno-Leguizamon and others is a subset of compassionate care, comprising end of life palliation in particular for terminal illnesses. India lags behind even in this though there is academic discussion by Dr Stanley C Macaden, Dr M R Rajagopal and others, and government committees; hence there is some helpful policy. A National Programme for Palliative Care (NPPC) was enacted in 2012 and the Narcotic Drugs and Psychotropic Substance Act was amended in 2014, making morphine available to end of life patients. Thus the discussion of palliative care in India appears be centred on the non-availability of narcotics though globally its ambit is much wider. However, the binding constraint for palliative care remains the virtual absence of budgetary provision despite continual, though slow, recognition of its need; the NPPC received two per cent of its original Budget proposal with a handful of states benefitting from it.
Policy recommendations have invariably included the need for training and education of professionals, for example by Dr Macaden et al. There have been several proposals for undergraduate courses as well as in medicine and nursing. Nevertheless, none has been approved by the Medical or Nursing Council of India, revealing where India's medical profession stands on palliative care, leave alone compassionate care. However, Kerala stands apart. More palliative care centres operate in Kerala than in the rest of India put together. As early as 2008, palliative care policy was integrated into health care and implemented through institution building with WHO collaboration in research and training.
As in the UK, the Indian experience is a tale of tenacity of enthusiasts, Indian and foreign - in taking forward the thinking, policy making, and application of palliative care. Yet it is astonishing how little the willingness of the Indian medical profession is in incorporating it in medical practice, leave alone allocating financial or human resources for it. The outcome is chaos at end of life moments reflecting an ingrained unwillingness and, thus, stark inability of the medical profession to impart compassion or palliation due to a gaping lack in training.
In 2014, Dr Macaden et al made strong recommendations for EOLC in India. First, there is no legal framework or policy guiding clinicians on dignified death which should include deliberated consensus decisions with a humane touch. Second, EOLC should recognise patient choices as a human right and as the cornerstone. Third, instituting or escalating aggressive medical intervention comprises malfeasance and amounts to harm and assault. Fourth, all medication should maximise comfort. Sedatives should be titrated and used minimally. Regarding government policy, first, the Government of India should enhance and speed up legislation. Second, EOLC should be included in all hospital care and health care delivery. Third, doctors, nurses and allied health streams should undergo mandatory EOLC training.
Those practices militated against my experience. I could give no choice to the patient who pleaded to be taken home such was the pressure I felt from the specialists in the ICU to apply the last available biomedical techniques despite the emaciated body in extreme pain. Even on the day of passing, a specialist recommended a liver function procedure. When asked if it would end the coma, the answer was in the negative. I further asked why such horrendous measures even at the final stage of life and was informed it was their responsibility to make available all procedures until the very end irrespective of other practices elsewhere. Female and male nurses hurried about pushing and shoving the inert body, robbing any peace, contemplation or prayer. Where was palliative care? When she did leave, not a single doctor or nurse came by; only a new one appeared to issue the death certificate. Where was compassionate care? Later, a doctor, proud owner of several hospitals, explained to me that doctors hide due to the wrath of relatives. I wish I had educated myself earlier with Dr Macaden, Dr Moreno-Leguizamon, Dr Rajagopal and others so that I could have been more assertive and my mother, as she had pleaded, could have died at home.
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