What puts the ‘public’ in public health palliative care?
A flurry of men and women with name badges and conference bags over their shoulders could be seen in the corridor of the Bristol Marriot Hotel at the start of the 4th International Public Health and Palliative Care Conference. I found myself an empty seat in the vast conference room full of participants from all corners of the globe, and sat down. Eventually, Professor Allen Kellehear quietened the crowd and welcomed us. He began with an anecdote informing us that a friend of his, whom he had known for twelve years, had passed away. This friend was his dog. He recounted to us one of his memories with his friend that he considered particularly profound. One day, his dog had managed to get hold of a fleeing rabbit in his back garden; the one in the herd that was perhaps feeling under the weather that day and was unable to run very fast. His dog began to run off, with the rabbit in its mouth. Professor Allen, frightened about the fate of the rabbit, started to shout at his dog to release it. The dog kept running, so he also began chasing it and repeatedly asking his friend to release the rabbit from its mouth. But the dog kept running and finally stopped in front of a rabbit hole. And to his utter surprise, the dog gently lowered the rabbit back inside the hole. Professor Allen went on to say that he wishes to do the same: to return the ‘Public’ back where it belongs within ‘Public Health’, particularly when talking about palliative care. He emphasised that death is a social process and palliative care is an ambiguous, messy business. I knew of Professor Allen’s work but did not know he was such a captivating presenter. The speech immediately lightened me up and gave me an instant palate for the temperament of the conference.
From my experience on various global Public Health projects, I acknowledge the fact that many a times the ‘Public’ is missing from ‘Public Health’. This conference stirred a lively discussion and debate concerning how to bring ‘Public’ back into Palliative Care. As one of the speakers said, “We cannot leave life and death solely in the hands of experts”. Accordingly, the main focus of the conference was ‘community resilience in practice’. As is customary with most conferences, I managed to attend only a selected few presentations and workshops. It was fascinating to hear how, through various intriguingly innovative ways, resource-poor settings around the globe are taking palliative care out of institutions and placing it more into the hands of the community. For example, representatives from the ‘Kerala Neighborhood’ project spoke on their experiences with involving students as volunteers in palliative care, a case from Brazil demonstrated how community health workers have taken a major role in end-of-life care, a project in Kenya incorporated home-based palliative care with other social services, and perhaps most interestingly, a project in Rwanda has taken community based end-of-life care as a means of reconciling with the genocide and “bringing back a sense of humanity to the society”. It was interesting to find out how the ‘Kerala Neighborhood Network’ project, initiated by Suresh Kumar, has inspired the ‘Compassionate Neighbors’ project in East London. I got to observe just how the idea of palliative care has not only been transferred but also translated in to various settings.
It was great to hear about the experiences with engaging the community in resource-rich countries as well. One presenter from Canada discussed the successes and challenges of taking a Public Health approach to palliative care in a vast country such as Canada. Participants were also impressed with the way Japan, the country with the highest life expectancy rate in the world, has successfully managed to bring the community, policy-makers, researchers and practitioners in agreement to deliver palliative care. A question was bothering me inside however; I was thinking whether the inherent sense of community, connectedness, and shared identity that I have seen in Indian villages or villages in my home country of Bangladesh, would translate to or even exist in the same way in an affluent community in the UK, Canada or Japan. I managed to get hold of Professor Allen during the lunch break and proposed this question to him. We had an enjoyable chat, and he explained to me that ‘community’ is not always determined by geography, but rather by phenomenological experiences. Thus, it follows that every society has a form of community, and we need to locate it and work with it accordingly. There was a vast array of food on the table in the lunch room, but there was even more food for thought.
Questions were raised on how to evaluate such community-based palliative care projects. Participants acknowledged that evaluating such forms of palliative care is not as straightforward as just measuring outcomes in an institutional setting. In a community setting, the question remains of who determines the outcome? The hierarchy of evidence in research culture was also examined. Participants largely felt that we would probably require a new approach to evaluate such projects. We need to think out of the box to understand the community perspectives of end-of-life care, and learn from various other sectors. One interesting presentation in this regard was on a study that analyzed the comments by visitors of a museum exhibition on a ‘Room for Death’ in Stockholm in 2012. Another was on engaging the community in end of life care through animation. During this presentation, I found with embarrassment that my eyes welled up with tears after watching a 3-minute animation meant for children. While pouring coffee into my cup from a flask during the coffee break, I contemplated why I began to cry watching a children animation. Was it because of it’s power of simplicity, or did it bring out the child in me, or force me to think about my dying father whom I cared for in his last days? I remembered Professor Allen’s words, “Death is a messy business”.
Professor Allen announced the ‘Compassionate City Charter’ during the conference. He said that if we realize the community ideal that end-of-life care is everyone’s responsibility, we need to take our ambition in to workplaces, schools, and faith groups. The charter provided a guide to community action that local governments are able to modify to partner with social and cultural institutions. One of his proposals was to devise a plan for a yearly remembrance day in each school or office in memory of a student or colleague who had passed away. Why should we remember the dead during war but not during peaceful times, he emphasized. The International Association for Public Health Palliative Care was also been launched at this conference. Towards the end of the conference, Dr. Richard Smith endeavored to lift the spirits of the audience, speaking on why death is a good thing, and how without death every birth would be a tragedy.
In the trajectory of my career, I have overlapped academic boundaries a number of times and have become a member of various ‘clans’: I started within the ‘clan’ of doctors, then public health physicians, after which came anthropologists, and very recently landed in amongst the territory of end-of-life care professionals. I can see that every member of this end-of-life clan does not speak the same language. I am happy about this, as I was speculating the global future of end of life care, and in a recent paper in progress I argued that there can be a plural, rather than a singular future of global end of life care. When my colleague Prof. David Clark in a recent post said ‘Let a thousand flowers bloom’ in palliative care he indicated a similar thought. I returned from the conference with more confidence in this notion.
Dr Shahaduz Zaman