At a time when noncommunicable diseases, often chronic in nature, are increasing and India’s population is ageing, there is an increased need for palliative care – but the field is often neglected in the country. Health Issues India spoke to Dr M. R. Ragagopal, founder and chairman of Pallium India, about the challenges facing access to palliative care and why it is so important.
- Palliative care is often a misunderstood field. Could you provide for our readers an insight into what palliative care is and clarify some of the misconceptions surrounding it?
Yes, palliative care is often a misunderstood field. Much too often it is associated with end of life care. Certainly, palliative care includes end of life care but is only a part of end of life care. This is sad, because the misunderstanding itself causes a lot of suffering. A person has to go through pain, other symptoms or major psychosocial suffering during months or years of disease-focused treatment and then may receive palliative care during the last days of life. Moreover, because the person and/or the family may find it difficult to accept incurability, the palliative care is denied because they associate it with terminal disease. I remember a doctor with cancer, who had been occupying a senior position in a well-known cancer hospital, when advised morphine for his pain, responded with the question, ‘Am I as terminal as that?’
Secondly, palliative care is too often associated with cancer. This results in some palliative care reaching people with cancer at the end of life; and palliative care being denied to people with other diseases where the suffering may be just as much or more. Palliative care is management of serious health-related suffering of the person with the illness and the family. The family is often forgotten; but may indeed suffer as much or more than the person with the disease. A seventeen-year-old World Health Organization (WHO) definition recommends palliative care for all life-threatening illnesses. If we use this definition, we have to ensure that life is defined as more than just existence. A beating heart does not mean that the person is living in the true sense of the word. A person paralysed below the waist confined by four walls throughout the year, living with multiple pressure sores, with repeated urinary infections and with major social, emotional and existential suffering, has a health issue that is as life threatening or more life threatening than somebody with advanced cancer. That is, if you define life as more than a body with a beating heart, one with some meaning of life and some enjoyment of life.
- Is there sufficient knowledge of and access to palliative care in India?
Unfortunately, no. Palliative care is hardly known in the country even to health care providers. The state of Kerala and some cosmopolitan cities elsewhere may be an exception; but even there the misconceptions are more common than proper understanding.
- How would you compare the state of palliative care in India with other countries?
Abysmally. India fairs very poorly, by several indices. The Economist Intelligence Unit’s ‘quality of death index’ of 2015 measured the quality of end of life care and found India 67th among eighty countries. It is estimated that less than two percent of the needy has access to basic pain management in the country. Added to this are the issues connected to infliction of suffering in intensive care units by inappropriate end of life care. And, a huge damage is caused by catastrophic health expenditure in India. A 2018 publication showed that 55 million Indians are pushed below the poverty line in a single year by catastrophic health expenditure. World Bank data show India to be amongst the worst twelve countries as far as such financial destruction is concerned.
- What is the importance of palliative care?
Palliative care becomes particularly important in fulfilling the health care systems’ basic duty of care ‘to mitigate suffering, to cure sometimes, to relieve often and to comfort always.’ Unfortunately, the transformation of the health care system during the last half century from ‘health service’ to ‘healthcare industry’ has taken the emphasis away from human suffering to disease-focussed care. The solution lies in the resolution of the World Health Assembly in 2014 asking all member countries to integrate palliative care in all healthcare at all levels (primary, secondary and tertiary) across the continuum of care (from the beginning of the suffering to the end) points us to the solution to this problem.
- You have been described as “the father of palliative care in India.” Could you provide for our readers an insight into the work you do and what inspired you to become such a strong advocate for palliative care in India?
That is a misnomer. The person who brought palliative care to India is Dr Lucito D’Souza who opened the Shanti Avedna Sadan in Mumbai in 1985, at a time when I had not even heard of the phrase, palliative care. I had started treating pain in the late 1980s, discovered that pain is one of the numerous elements of suffering of the person with the disease and had the good fortune to discover palliative care. In the early 1990s, my colleagues and I attempted to create a non-government organisation to plan and fund such work, at that time in collaboration with the Government Medical College Hospital, Calicut where I was an employee. From the beginning, the planning was done together by professionals and non-professionals together and this lay the foundation of community oriented healthcare as we attempt to provide in Kerala’s palliative care. Our work was very warmly received by the general public, attracted the attention of the media and we got a lot of support from the community first and later from government entities.
I advocate for palliative care because I grew up seeing suffering around me in my village as a student and later as a medical student and a doctor. It was painful to watch suffering being ignored while high-tech medical care often was given to patients. My colleagues and I also were saddened that the suffering of the families was never given attention. Opportunities to get some formal education in palliative care from kind-hearted palliative care gurus from the UK and later by policy analysts and activists from USA helped us to give better structure and efficiency to our work.
- What influences your approach to providing palliative care?
Healthcare has to be focused on the person who needs treatment and his family. Currently that is not the focus of the healthcare. The focus of healthcare today is disease. It is absolutely essential to shift that focus which is concentrated on a disease to the person carrying it and his family. This is precisely what will reduce health related suffering.
When I see a patient I would ask questions to find out what exactly are the elements of that person’s suffering, bearing in mind that those elements could be physical, socioeconomic, emotional or existential. Next, I shall find out how the family is coping in all these domains and I shall remember that I have a duty to provide care attending both to the disease and the suffering throughout the continuum of disease. And the care has to continue well into the bereavement phase to support the family, with special attention to the occasional family member, who may go into something we call complicated grief.
- What are the major challenges obstructing access to palliative care in India?
The major challenges. Palliative care is a major change from the status quo. Any change is resisted; that is a human and social reality. A few people would be eager for such change; but that will be a tiny minority. There will be another tiny minority violently fighting change. In between would be the majority to whom we will have to advocate for rational health care.
The challenges can be said to be in three major domains.
The lack of adequate public awareness and professional education. People do not know that they have a right to pain relief. As far as professional competence is concerned, till 2019, pain management or end-of-life care was not even part of MBBS curriculum. Secondly, there is a major issue of lack of access to essential opioid medications for pain management. We need to achieve the balance that Western European countries have achieved of bringing in enough restrictions to prevent diversion of opioids for non-medical use, and at the same time ensuring that needless barriers are avoided to ensure access to the person with pain. We have shown in Kerala that this balance can be achieved. Since 1998, from major hospitals to small villages, rational access has been ensured. Today more than 170 institutions in various parts of the state stock and dispense such medicines and during the last 20 years there has not been even a single major instance of diversion of such medicine.
- Is there sufficient momentum by the central and state governments to expand access to palliative care?
On the positive side, there is significant activity. The National Health Policy brought in a couple of years back has included palliative care in its vision, if not in its action plan. The Government of India’s National Program for Palliative Care of 2012 is active, albeit in a small way. After nineteen years of advocacy, in 2014, the Indian Parliament amended the draconian NDPS Act removing needless barriers to opioid access, though in most states the amendment is yet to be implemented. At the state level since 2008, the Government of Kerala has had a palliative care policy. Subsequently, the Government of Karnataka, Orissa and Tamil Nadu also have brought in state policies.
What is being done is so little compared to what is necessary but I believe we are moving in the right direction though very very slowly. I believe at least some degree of momentum can be achieved with an effective national program with a clear plan for implementation.
- Why is palliative care so often overlooked in the public health discourse in India?
I think we palliative care activists have not been vocal enough; we have not been efficient enough as advocates. The huge burden of health-related suffering in the country is like an elephant in the room. Only those who go through suffering see it; but even they accept the elephant as part of life; they do not realise that it is necessary and possible to throw the elephant out.
- How has the change in India’s disease burden (i.e. the transition from communicable diseases to noncommunicable diseases – particularly chronic conditions – being the dominant cause of death) affected both the need for palliative care and the infrastructure administering it?
The major players at the government level and in the non-government sector have not yet spoken much about it. The activity in one corner of India, the state of Kerala, is often overlooked considering the enormity of problems in our country and considering its size and population. The change in India’s disease burden, namely the growing transition from communicable diseases to non-communicable diseases is increasing the need for palliative care particularly because of improved longevity and the rising number of the elderly population. This certainly increases the need for palliative care but very clearly that has not made the need to be perceived enough and has not resulted in action by the healthcare planners and managers.
- Going forward, what do policymakers, healthcare professionals, the private sector, and other stakeholders need to do to ensure palliative care is accessible, affordable, and of high quality?
The action plans can be simple and relatively affordable; but the political will for such a change can be created only by improved public awareness and public demand. The experience in Kerala has shown that it was the initial work of the first thirteen years by non-government organisations and the growing popularity of palliative care in the state that resulted in government’s creation of a palliative care policy. I believe that advocacy would be the key. Policymakers can do a lot only if current policies and programs are translated into action. Even when government system is effective, non-governmental activity will be vitally important to set benchmarks and to ensure quality. The government’s activity will be needed for adequate coverage but it carries with the risk that palliative care becomes something that is doled out mechanically while the non-governmental activity will come from heart will make quality visible enough for comparison.
- Finally, do you have anything else you wish to add?
Earlier I mentioned an elephant in the healthcare room. It is composed of one major error of omission and two major errors of commission. The error of omission is the failure to provide access to palliative care and pain relief including the lack of education, the lack of availability of essential medications including opioids and lack of adequate policy and implementation.
The first error of commission is the inappropriate inhumane end of life care in intensive care units. What is important for one approaching the end of life is physical comfort in terms of palliative care but also most importantly, the presence of loved ones around them wherever possible. This is what is precisely and systematically robbed from them by over-medicalisation of death in intensive care units. For all practical purposes, this is rigorous life-imprisonment with medically inflicted torture. There is no ethical justification for this. If only people are willing to face the reality of death being the inevitable consequence of life the matter could be discussed and such atrocities could be prevented. Humane, rational end of life care policies supported by legislation is absolutely essential to prevent such suffering.
The second error of commission is the current financial destruction of families in India. A study published in 2018 shows that 55 million Indians are pushed below the poverty line by catastrophic health expenditure. That is more than 4.5 percent of the population in one year. According to World Bank data, India is the among the worst twelve countries as far as such destruction is concerned; this cannot go on. Our advocacy should be focused at action on all three of these major errors when conceiving and managing health policy.
Dr M. R. Rajagopal
A person’s right to be treated, not merely as a unidimensional patient suffering with a life-altering disease, but as a human being with multiple dimensions that determine his or her quality of life, lies at the heart of Dr Rajagopal’s work on Palliative Care. His work spans three decades and more.
Dr Rajagopal is the director of the WHO Collaborating Center for Policy and Training on Access to Pain Relief at Trivandrum Institute of Palliative Sciences (TIPS) and the founder-chairman of Pallium India.
Finding that over a fifteen-year period, only seventeen of India’s 28 states had adopted the simplified rules, his colleagues and he pushed for changing the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India of 1985. In February 2014, the Indian Parliament passed the Narcotics Amendment Act which is now getting implemented in different states across the country. His initiative has also contributed to the development of a Government policy on Palliative Care in the state of Kerala in 2008 and Government of India’s National Palliative Care Strategy in 2012.
Dr Rajagopal won the ‘Alison Des Forges award for extraordinary activism’ from Human Rights Watch in 2014, the award for excellence in pain management from the International Association for Study of Pain (IASP) in 2009 and the Marie Nyswander award of 2009. A documentary film on Dr. Rajagopal’s contributions to palliative care in India titled “Hippocratic: Eighteen experiments in gently shaking the world” produced by Moonshine Agency, Australia, was released on October 14, 2017. In 2017, Dr. Rajagopal was named one of the thirty most influential leaders in hospice and palliative medicine by American Academy of Hospice and Palliative Medicine (AAHPM).
In recognition of the yeomen service to the field of palliative medicine, Dr Rajagopal was awarded the Padma Shri in 2018.