Achieving the promise

Achieving the promise

– Dr. M. R. Rajagopal, Thiruvananthapuram

The theme of the World Hospice and Palliative Care Day this year is “Achieving the promise: universal access to Palliative care”. A noble goal, no doubt.

Universal Health Coverage (UHC), a global goal under the UN sustainable development goals (SDG), is supposed to be achieved by 2030. It should ensure everyone receives “quality health services without financial hardship, encompassing preventive, promotive, curative, rehabilitative, and palliative care”.

How can this be achieved in the context of Palliative care? As the World Health Assembly 67 recommended, palliative care has to be integrated in all healthcare.

Beautiful dream! We have a huge problem of serious health related suffering (SHS) in India. The Lancet commission report of 2017 pointed out that from 20 common diseases for which we have data, the estimated number of people with SHS would be about 7 million. Taking in all other conditions which we may not have data for, the numbers are likely to be closer to ten million. In 2025, less than 4% of the needy has access to basic pain relief!

The WHO themselves now has accepted that the goal is not achievable within that timeframe. It says, “The world is off track to make significant progress towards Universal Health Coverage (Sustainable Development Goals (SDGs) target 3.8) by 2030.”

Well, if not by 2030, at some point of time, can we not strive to achieve this goal in our country? Can we, palliative care activists, have a plan of action for integrating Palliative care across healthcare in India?

To take this (like any other major activity) forward meaningfully, a strategic plan will be necessary. We must have clarity about the current issues and create an action plan to move forward effectively one step at a time. The world seems to have agreed that such steps should be SMART – Specific, Measurable, Achievable, Relevant and Time-bound. Not building castles in the air, in short.

Let us take stock of the current situation. What are the most important elements of suffering in this country for which some SMART action can be taken? First, we will have to accept the sad truth that less than 4% of Indians in pain has access to pain relief, despite India being one of the largest cultivators of poppy and exporters of opium. Can we make access to it in India for the needy a priority? When we do, let us also make sure that we go by the needs in our country; and not just blindly follow guidelines from high income countries where the kind of suffering that our people go through may not even be known.

For example, as we read this, how may thousands of children and adults would be writhing in pain for months together from serious burns? We do not even have published literature showing what the elements of suffering in our country are. Moving beyond physical suffering, how about poverty and starvation? And the social vulnerability of women and children. And, how many people have geographical inaccessibility to any healthcare? What are the solutions?

I am not suggesting that we can address all this in the next five years. All I am saying is, if we prioritize some issues to be addressed, then we can decide on the SMART action steps that can be taken in the next five years.

My suggestion: as the first step, let us get together, discuss and identify the most serious elements of health-related suffering to be addressed. The UN Special Rapporteur for Torture says, “The de facto denial of access to pain relief, if it causes severe pain and suffering, constitutes cruel, inhuman or degrading treatment or punishment”. Have we engaged in enough advocacy to improve the situation?

Second, doesn’t the healthcare system actually add to the suffering? We live in a country in which about 29,000 – 32,500 people die by suicide every year due to health-related reasons. National Crime Records Bureau has the data. What were the reasons? Unrelieved pain and other symptoms? What else?

We need to stop and think. Is our healthcare system not actually adding to the suffering in another way? How many kill themselves because they did not have the money for treatment or even to exist? We have credible data published in 2015 which showed an almost unbelievable reality – over 55 million people in India were driven below poverty line by catastrophic health expenditure in a year. That is more than 4% of the population! We seem to have done little about it. Should this not be considered a priority? We in India see this all around us. If we do not attend to this urgent matter, who else will?

And yet another pressing matter. India and China are particularly notorious for inappropriate end-of-life care which inflicts unbelievable suffering to the person. Since the turn of the century, somehow doctors seem to have accepted that we have a duty to stretch out the dying process even when a reasonable return to an acceptable quality of life is not possible. What I am saying is supported by data from European countries where in the context of incurable illness, 89.6% people are taken off life support systems and instead given compassionate palliative care at the end of life. In India about 70% of them are continued on painful artificial life support systems till they eventually die. The Bioethics Unit of Indian Council of Medical Research has argued against this practice.

It has been two and a half years since the Supreme Court of India revised its 2018 judgement and brought in simpler processes to make withdrawal of life support systems compassionately. But we of the medical system have not changed our stance. The suffering continues.

I know I have painted a gloomy picture here. It is important to understand the situation so that we can make realistic plans. Can the palliative care fraternity get together and create a strategic plan? For example,

• Work with the Government to ensure an external review of the National Program for Palliative Care leading to suggestions for any course correction.
• Fully realizing that despite the passing of ten years, the NDPS amendment rules of the country have not been implemented in many states, can we look into the barriers for lack of implementation?
• Create action plans for advocacy with the Government and with the public.
• Progress is minimal in implementation of the inclusion of palliative care into MBBS curriculum since 2019 and in to nursing curriculum since 2022. What we can do as a collective body? A lot.

‘Achieving the promise’ is possible – if we accept the enormity of the task, identify barriers and act so as to address the current injustice of unmitigated health related suffering.