About the Author:
Dr Ashita Singh is empowered with an MD Internal Medicine, MA Bioethics, National Fellowship in Palliative Medicine, Fellowship in Infectious Disease.
She is a Physician at a secondary level rural hospital in Maharashtra and Head of EHA’s (Emmanuel Hospital Association) Palliative Care service, overseeing 15 rural home-based palliative care programs in North India.
It is a privilege for me to share a few thoughts on this important theme which I believe, is crucial for health care in our country.
There are a few questions that present themselves as we consider this for our country: What do we mean by integration of palliative care? Why is integration necessary? How far have we come on the journey? What are our challenges to effective integration from the perspective of the members of the public health care system? How can people who are passionate about palliative care strategise towards the dream of Palliative care for all?
We are aware that palliative care can be seen to be provided through various models, some as below:
- Specialist palliative care
- Primary palliative care
- Home based palliative care
- Hospice care
When we say “integration” of palliative care, we mean that palliative care is seen as one of the integral functions of the public health system, rather than a something that is limited to a specialised department or referral unit. The reasons for this are rather simple and self-evident, but I will put down a few for us to consider.
- Private health care, despite its ubiquitous nature, is limited in access to the rural poor in India. Public health care, on the other hand, is accessed by a large proportion of people in our country, particularly in rural areas. If palliative care is not delivered through the public health system, a significant proportion of our people would be excluded from the circle of access to any palliative
- 10 million (1/6th) of those in the world with serious health related suffering lived in India as per the Lancet, 2017. The need for palliative care in rural areas and cities, especially in North India is distinctive in many ways. In rural areas a lack of awareness, poverty and difficult access to tertiary level care makes the phenotype of patients with life-limiting illness quite distinct. In areas where access to curative treatment is easier, the primary disease is addressed early, appropriate treatment sought, and good outcomes for disease achieved in a significant proportion of people, so that this group of people receive a good prognosis. However, in the words of Dr Stanley Macaden, palliative care specialist from Bengaluru, cancer in these north Indian villages “is allowed a free hand to ravage the bodies of the poor, completely unchecked and unchallenged.” It is not hard to imagine, then, that the quantum, degree, and intensity of the need for palliative care is proportionately much higher in rural areas than in urban.
- In areas of our country that face challenges of illiteracy, poverty, lack of awareness within communities, and challenges for access to appropriate health care, the holistic approach of palliative care carries potential to bridge many of the existing gaps in addressing overall health related suffering, influencing some of the determinants of quality of life for people living in these regions.
Let me illustrate these points for you with a story.
We happened to meet on one of our home based palliative care visits in one of our villages, a young man of about 25, called Devidas (names changed). He likely has cerebral palsy, but had never been evaluated nor was he the recipient of any medical or rehabilitative attention. He lay day and night on a little rope cot, so that when he passed urine, it would easily go down into the mud floor of the porch of his home where he spent most of his day alone, while his mother was out at work. If he happened to soil himself, well, he just had to wait till his old mother returned from her labour as a hired goatherd, to be cleaned up. His father, Ramsingh, had passed away a few years before of oral cancer. He had never been to a hospital, and died an agonising death, one which his mother describes with a stoic, emotionless face, because she is just used to suffering. It is unlikely that Ramsingh figured in any statistics showing cancer, since he never had a biopsy to prove it, let alone any treatment with modern medicine at a cancer centre. All this was simply beyond the reach of this family for a host of reasons. All he got was treatment with some indigenous pastes which only made the odour and pain worse, as the cancer progressed unhindered by any intervention. There is no death certificate that furnishes the cause of his death, because it all happened at home.
When we attempted to get Devidas, his due disability benefits which would ease the financial load on his ageing, lonely mother, we realised what a huge battle that was even for us, ‘powerful, elite people’ on his behalf. To avail his disability benefits, he needed a disability certificate, for which he needed an Aadhaar card, for which he needed some proof of his existence (birth certificate, school certificate etc.) There was none. He was not on any census anywhere, and for all practical purposes he did not exist as a part of any human community. We managed to facilitate a voter’s ID for him which was a valid ID proof that did not require anything other than a physical verification of his existence — ironic for someone who can barely tell morning from evening, let alone vote—and has anyway been utterly failed by anyone he might have considered worth his vote. He was enrolled for the Aadhaar, and taken with significant difficulty to the Aadhar office for his fingerprints and verification but alas, the last we heard from the Aadhar office was that he had been rejected for the card. We were told that the reason for his rejection would only be revealed to the person himself (irrelevant, in Devidas’s case), or to the next of kin (again, a challenge, with his old widowed mother’s illiteracy and disempowerment to be able to read the explanatory message), but we presume it may have something to do with the fact that both of Devidas’s hands are severely contractured in a way that makes finger prints of all fingers, (a requirement for the Aadhar) all but impossible. We continue to advocate for him to be counted worthy of his rightful identity as a citizen of our soil, a son of India.
Stories like these need to raise some very pointed questions for us as a nation that boasts of being a flourishing economy, offering technologically advanced medical tourism at “affordable” prices for the elite who travel here from various countries. We have come to accept as normal, the preventable health-related suffering of masses of our own people, turning our faces away in denial when in reality we know that these are gross violations of human dignity.
Another important case in point raised by this story is the fact that the only answer to the palliative care needs of this suffering family and hundreds like them, is integrated palliative care. Can you dream with me for a moment, about how the situation could have been quite different if we had a system in place that could care for them? We are not talking about high-end surgery, radiation and chemotherapy as the starting point. What we are talking about, is reduction of some very basic aspects of preventable suffering for this disempowered family. Could they not have received through the existing health care delivery system, adequate pain relief, wound care, food security and widows and disability pensions through facilitating access of benefits that are rightfully theirs and already provided for them on paper?
When we talk about integration of palliative care into the public health system, I suggest that it would be useful to conceive of it in small sized bites that are aimed for universally, and progressively, in keeping with our recent commemoration globally on 12th December as the ‘International Universal Health Coverage Day.’ This year’s theme is ‘Build the world we want: A healthy future for all.’
Step 1: Pain management (including access to opioids), and wound care as the basic non-negotiables for all people with life-limiting illnesses, predominantly cancer. This initial step would make a huge difference to the overall quantum of suffering that is currently going completely unaddressed in many recesses of our country where the public health care system is the only existing one that can really cater to the people.
Step 2: Control of other common symptoms as feasible, with step-wise empowering of health care providers in palliative care symptom management.
Step 3: Facilitation of social support, which is likely to be extremely effective as the networks for this within the public health system are strong, and can easily be set into motion once the caring relationship is established.
Step 4: Prevention, early diagnosis and appropriate treatment of cancer and other life-limiting illnesses.
Step 5: Psychological and spiritual support through sensitisation and fostering of caring communities, modelled through and mentored by home base palliative care teams that show the way.
A multi-pronged approach would be effective in achieving our goal. This would include continuing and repeated sensitisation trainings in basics of palliative care for all members of the public health care system, with models of excellent high quality palliative care as practical learning platforms for hands-on experience.
Let us continue to hope and strive for a better future for palliative care, where indeed no one will be left behind.