This year, October 10 is World Palliative Care Day as well as World Mental Health Day. 35 years after it came into the country, palliative care continues to be in infancy in India, according to Dr M R Rajagopal, founder, Pallium India. In an interaction with Viveka Roychowdhury, he rues the lack of skilled staff, the reasons why corporate hospitals are slow to offer palliative care and the work still to be done to expand palliative care in the country
Dr Rajagopal, you are considered the ‘father of palliative care in India. Less than 2 per cent of India’s 1.2 billion people have access to palliative care. Why is it taking so long for palliative care to become more accessible? Is it a question of economics?
In response to the first question, I must say I truly am not the father of palliative care in India though a New York Times article called me that and the title stuck. The real father of palliative care in the country is Dr Lucito D’Souza, an oncosurgeon in Mumbai who created the first hospice (in-patient palliative care centre) in the country, namely, the Shanti Avedna Sadan. This was in the year 1985.
There are many reasons why the growth of palliative care in the country is so slow.
- It demands a major paradigm shift in the way the current healthcare system works. The system now focuses on diseases to the practical exclusion of consideration for illness-related suffering. Palliative care is about the person and the family and their quality of life.
- Palliative care is not a simple concept which can be taught by a one-page protocol – unlike an immunisation schedule. Palliative care is prevention and treatment of serious health related suffering, which has many elements including pain and other physical symptoms, emotional issues including depression, anger, guilt and anxiety, social issues of huge relevance to this country and spiritual issues – not those related to religion but existential questions like the meaning and purpose of life.
- Such a change may not be convenient for the health care system.
- The delay in incorporating essential palliative care in the medical education system. Most elements of palliative care including basic pain management, end of life care, attitude, ethics and communication came into MBBS curriculum only effective from 2019. It will take a whole generation to translate that curriculum change into action.
- Access to essential medicines. The draconian Narcotics Drugs and Psychotropic substance act of 1985 posed a huge barrier to access to essential medicines including morphine for pain relief. It took advocacy for a period of 19 years and finally the Indian Parliament in 2014 changed it. But now, 29 states and six Union Territories have to individually implement it. In our country, laws and policies do not get translated to action automatically.
Specifically in response to the question, “Is it a question of economics?”
The answer is Yes and No. In a negative kind of way, there is an economic reason. Palliative care is low cost. In its absence, patients often receive expensive and aggressive disease specific care which destroys families.
But it’s also easy to see that palliative care may adversely affect the profit of some health care institutions. If the hospitals see profit only in terms of money, then they may be reluctant to bring in palliative care. Indeed, the vast majority of large corporate hospitals do not yet have palliative care in the true sense of the word.
But if the institutions look at profit also in terms of good will to the hospital, they will see that palliative care is essential. Indeed, corporate hospitals nowadays have started including palliative care. But the change is slow.
Do we have enough clinical staff qualified to practice palliative care?
Not at all. 35 years after it came into the country, palliative care continues to be in infancy in India. For a country of 1.3 billion, we have only 10 doctors qualifying with an MD in Palliative Medicine per year as the course is conducted only in three institutions – AIIMS, Delhi, TMH, Mumbai and GCRI, Ahmedabad.
The stipulations regarding the number of faculty, the number of inpatient beds etc, prevent most institutions from starting similar courses. On the non-government sector, there are several courses but none that would be attractive enough for young doctors because unless a course is approved by the Medical Council of India, they will not provide the doctors with adequate career opportunities. We have a long way to go.
Are hospitals and hospices in India geared to offer palliative care?
No, but they can easily be. Palliative care doesn’t require a lot of expensive equipment or technology. It is low cost in most ways except that it is manpower-intensive.
In the light of the opioid crisis and abuse, how can authorities ensure that there is no abuse of medicines like morphine issued for pain relief, are being used safely without abuse or misuse for domiciliary care? Will the Narcotics Amendment Act which is now getting implemented, which you and your colleagues at Pallium India helped formulate, be sufficient?
My clear answer is that the amended Narcotics Act is adequate. In evidence, I can provide both instances from the West and from low- and middle-income countries.
Our view of the problem is much too often superficial, concentrating on the notorious opioid abuse-epidemic in the US; but look at western European countries. The UK has used them for half a century and certainly in the last quarter of a century, all western European countries are using it without a significant abuse problem. What these countries have shown is demonstration of the Principle of Balance, that is, once we accept that the health care system has a duty not only to prevent abuse of the drugs; but also to make them available for the needy for pain relief, we can avoid all unnecessary restrictions but still ensure adequate restrictions.
The next question is whether we can follow the Western European model in a country like India? The answer is a clear yes for two reasons:
- The application of principle of balance has been demonstrated and successful both in Uganda and Kerala as well as in several other countries to a progressive rate including in many Sub- Saharan African countries. In Kerala, for the last 22 years, a simple policy for opioid use has been established so that 170 institutions from various parts of the state (including in several small towns and villages), opioids are available and used. It is also gratifying that around 450 non-government organisations in the state of Kerala are involved in palliative care, offering support to people in suffering around them. We have shown that with simple restrictions like documentation of every dispensing of opioids and insisting on it being used only by doctors with training, adequate control measures are put in place and unnecessary barriers are lifted. This has worked well as is evidenced by the lack of reported abuse but also by a study over a two-year period in Kerala which was published in The Lancet in 2002. The NDPS amendment act of 2014 was created based on the above experiences.
- What Pallium India endeavours to do is to “demonstrate, educate and facilitate”. In all three areas, we believe that we have significant achievements to be happy about. Our Trivandrum Institute of Palliative Sciences established in 2006 (which is a WHO collaborating centre now) demonstrates how a balance between quality and coverage can be achieved with a constant effort of not allowing the quality to fall below a certain standard while at the same time, coverage keeps getting expanded with participation of the community which is essential if the person is to get significant relief. I am happy that currently we look after more than 1350 patients based in Trivandrum and make it visible to people who come to us for training. On the education front, we train doctors, nurses and other health care professionals who go back to their respective places and either initiate palliative care services or combine as part of their routine health care. And our advocacy, we believe, has resulted in the creation of the National Programme for Palliative Care (NPPC) in 2012 and had created a major catalytic force in the NDPS amendment in the Indian Parliament in 2014, to the inclusion of palliative care in the National Health Policy in 2017 and creation of Kerala State Palliative Care Policy in 2008 and its subsequent revision in 2019. These are all achievements, but this is negligible compared to what needs to be done. In a country with around 10 million people in serious health related suffering, understandably the work is going to be onerous. The inclusion of palliative care in the National Health Policy does offer hope to us about significant improvement in the coming years.
There is something for everyone to do here; not only for the Central and the State governments. True improvement in the quality of life can happen only with participation of the community.
It’s important that public health activists as well as other non-government organisations must join hands with the government system. This of course means more awareness about their problem so that needless suffering can be avoided.
On the occasion of World Palliative Care Day, which this year falls on October 10, what are the achievements over the years that you treasure most?
That tens of thousands of people in the country now have access to palliative care, though that is only a tiny percentage of the needy.
That we could catalyse the creation of the NPPC by Government of India and the State Palliative Care Policy of Government of Kerala.
That we contributed significantly to the amendment of the NDPS Act of India in 2014.
That the new national health policy of 2017 does include palliative care.
That thousands of professionals have now been educated in palliative care.
That at least in Kerala, we could get the community to be partners in palliative care delivery and that there are many thousands of volunteers in Kerala helping people who need palliative care.
That the palliative care system does attempt to reach out to the marginalised.
And what are the goals that you still have to accomplish?
Despite all the above, we have reached out only to about 2 per cent of the needy in the country. There are millions out there in suffering yet! The legal and policy changes need to be effectively implemented nation-wide.