Shahaduz Zaman raises questions about the global future of dying

Approaching the podium at a recent global health colloquium, I spotted something which I hadn’t seen before: a tiny set of traffic lights designed to cue the speakers and help with their timing. As I stepped up it wasn’t the sight of this innovative time-keeping device but an awareness of the delegates, the global experts on palliative care arriving from 39 different countries to fill up the conference room, which made me slightly nervous. Unlike other panel members from the palliative care ‘world’, being a relative newcomer in this field with my background in medical anthropology and global health, I was aware that I did not have ‘knowledge’ to share but rather questions to raise.

Some of the themes highlighted in sessions at the AIIHPC Global Colloquium on Palliative Care in Dublin on 14-15 October 2015 were the challenges of implementing the WHO resolution on palliative care (PDF) of 2014; putting palliative care into the mainstream of health systems; and transferring good practices in palliative care to different contexts.

These sessions provided the context for the questions I wanted to raise.

In my presentation on the challenges and opportunities in developing a global health approach to palliative care I asked, given the differential demographic stages, different level of health system preparedness, local moral worlds, politico-legal systems around dying and differences in the availability of evidence in different countries, what end of life care model do we envision for the global future of dying?

Would it be the traditional institutionalised specialised service delivery model or an innovative generalist community development model? I referred to the recent ranking of palliative care The Economist Quality of Death Index which mostly the Western developed countries at the top of the list, countries which predominantly follow conventional specialist palliative care models of delivery.

There is an implied assumption in this ranking that the bottom-ranking countries, most of which are developing countries, should aspire to the level of quality of death of the top ranking countries.

So when we talk about transferring best practices, are we then talking about transferring the institutionalised specialised service delivery model to the other contexts? There is no mutual understanding about an ideal, effective, sustainable and appropriate palliative care even within the top ranking countries.

Can we roll out the model of palliative care intervention developed in the West (with the surrounding debates) across settings with vast social, political and cultural differences?

In this universalising vision of a linear developmental future, the countries categorised as part of the developing world are, using post-colonial thinker Chakrabarty’s phrase, in the ‘waiting room of history’.

Should we frame our discussions on the ‘transfer’ of different palliative care models to other countries and contexts, or rather on the ‘translation’ of these models?

Should we be aiming for a common future for global end of life care, or a plural one?

I managed to finish my presentation before the red traffic light came on. To my relief the expert delegates took up these questions positively and we engaged in a lively post-presentation discussion.

My questions became more yet relevant on the next day of the colloquium when Dr Suresh Kumar, one of the founding members of the Neighbourhood Networks in Palliative Care (NNPC), the most developed version of the community development-oriented model, presented his experience.

Dr Kumar said that in contrast to institutional spatial palliative care, the citizens of Kerala have mobilised to provide home-based ‘total care’ (providing psychological, financial, medical and emotional support) to the patients who require palliative care through community-based organising. He mentioned that this model was initiated in Kerala in the late 1990’s and has now spread to other parts of India and beyond.

The audience raised questions about the feasibility of this model in European countries, where the state plays a stronger role in caring for people and there are a number of legal implications when getting involved in the care of neighbours. It emerged from the discussion that this question doesn’t yet have a clear answer. It was agreed that there could be ways in which the essential principals of NNPC may work in the European context, with some necessary modifications. As Dr Kumar mentioned, some countries including Switzerland have tried already.

He talked about the ‘compassionate community’ movement in the UK which is based on the same principal of community involvement. He emphasised that the success of this model depends on the level of community ownership of the project. He pointed out that the model works best where there is an extensive support network in the community, along with a strong backup of institutional and referral systems.

I was particularly keen on Dr Kumar’s presentation because we are taking a close look at this model as one of our case studies in our Wellcome Trust funded Global Interventions at the End of Life research project. I recently spoke to behavioural scientist Dr Devi Vijay about models of community participation in palliative care, during her visit to our team on the University of Glasgow’s Dumfries Campus, and you can listen to our conversation on SoundCloud.

After Dr Kumar’s presentation I had the opportunity to discuss various dimensions of the Kerala model of NNPC with him while walking through the grand corridors of Dublin castle. During our conversation I asked about the sustainability of such a model, as it depends heavily on volunteers and there will always be questions about their recruitment, monitoring and retention.

Dr Kumar told me that the ultimate aim of this model is to have an entire community that is sensitised towards palliative care, in which community members will take the responsibility into their own hands and there will be no issues of ‘recruitment’ or ‘monitoring’ of volunteers. I found this as a fascinating vision. However, we both acknowledged that there are challenges of transferring this model to other contexts.

This issue of the transfer and translation of end of life care models is exactly what our team hope to examine further in our case study.

Shahaduz Zaman