Global Campaign for Access to Palliative Care – an Urgent Need: M.R. Rajagopal MD

Categories: Leadership, Opinion, and Policy.

Half a century after the birth of palliative care in the form of St. Christopher’s Hospice in the UK in 1967, the Lancet Commission for Global Access to Palliative Care and Pain Relief published its findings in 2017.  It reported that “people living in low-income and middle-income countries have little or no access to palliative care”, and that “more than 80% of the people who died with serious health-related suffering (SHS) in 2015 were from developing regions, and the vast majority lack access to palliative care and pain relief”.[i] Clearly, progress during that half century has been inadequate.

The intensity of suffering of those 50 million people living with illness can be unbearably cruel and can last for weeks, months or even years. “Like a nail being driven with a hammer into my ear, never stopping”, and “a red-hot iron being pushed into my bones, twisted and withdrawn, again and again, never stopping” are descriptions I have heard. I remember a man who, finding his prayers for relief unanswered over months, had started praying incessantly for strength to kill himself.

We know that most of such suffering is needless. We know that it is not a matter of cost. The Lancet Commission1 has provided an ‘essential package’ for palliative care delivery that would cost only a tiny fraction of the cost of universal health coverage.

And it is not as if this failure of health systems has escaped global attention. The World Health Assembly, the decision-making body of the World health Organization (WHO), in 2014 asked all member states to integrate palliative care into healthcare at all levels (primary, secondary and tertiary) across the continuum of care (from the beginning of the suffering to the end)[ii]. It mandated the WHO to be the global steward for such action. All member states approved the declaration. Yet the suffering continues.

Perhaps our efforts have not been effective in addressing all major barriers simultaneously. 19 years of civil society advocacy in India resulted in simplification of the draconian Narcotic Drugs and Psychotropic Substances (NDPS) Act which had placed multiple barriers to rational medical access to opioid analgesics. Despite the legal reforms, huge implementation gaps remain. Clearly, legislation alone cannot bring in change in perceptions and behaviour. The solution would have to include overcoming the multiple barriers.

If the global monster of lack of access to palliative care is multi-headed, our strategy also needs to be multi-pronged, addressing each of the following major barriers.

  • Public awareness and community engagement: As the Astana Declaration of 2018 pointed out, healthcare for all can be achieved only if it is healthcare “with” all[iii]. The community needs to be engaged not only as partners, but with some control over its own healthcare delivery. Can we have a global plan for advocacy inviting lived experiences from people who have suffered and from their families, and giving visibility to them?
  • Professional awareness and education: Generations of doctors and healthcare managers focus on diseases and ignore suffering. Acceptance of the obligation to relieve suffering as part of the ‘duty of care’ and empowerment in palliative care delivery as an integral part of healthcare delivery will go a long way.
  • Advocacy for principle of balance in opioid access: General reaction to opioids is too often knee-jerky rather than rational. Experiences from Western European countries, from low-middle income countries like India and from low-income countries like Uganda have shown that it is possible to institute and practice simple control measures for access to opioids, balancing access to pain relief with adequate protection from inappropriate and non-medical use.

The cruel neglect of people enduring preventable suffering must end. Technical guidelines alone have clearly been unable to solve the problem. Can a strategic partnership between WHO and civil society organizations create effective action plans to overcome all the above major barriers concurrently?

 

The author is chairman of Pallium India (https://palliumindia.org) and author of “Walk with the weary”

Walk With the Weary

 

References:

[i]Alleviating the access abyss in palliative care and pain relief— an imperative of universal health coverage: the Lancet Commission report. 2017. https://www.thelancet.com/journals/langlo/article/PIIS2214-109X(18)30082-2/fulltext

[ii]WHA 67.19. Strengthening palliative care as a component comprehensive care throughout the life course. 67th world health assembly, 2014. http://apps.who.int/gb/ebwha/pdf_files/WHA67/A67_R19-en.pdf

[iii]World Health Organization. Declaration on Primary Healthcare. Astana 2018. https://www.who.int/teams/primary-health-care/conference/declaration

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