Merryn writes….Kerrie Noonan of Groundswell fame has just posed me this question with a video camera in hand. She was compiling the perspectives of people attending the 2017 International Palliative Care and Public Health Conference in Ottawa to share in the great closing plenary she delivered with Kathy Kortes-Miller. I gave a two sentence answer. But, as is always the case, I’ve now refined my ideas. And had many more thoughts since…
For those of you who are not ‘in the know’, public health approaches to palliative care call for a move away from a professionalised service-based response to death, dying and bereavement. They are rooted in the writings of sociologist Allen Kellehear, who argues convincingly that people should die as they live – in a social, not a medical, context. And that within this social context there exists great knowledge, expertise and resource – held by individuals, families and their wider communities. This way of thinking informs his call for a fundamental shift in how palliative care is conceptualised and delivered. As Barbara Gale tweeted from the conference:
These underlying principles are very appealing. They also have a lot of resonance with my work over the years. I’ve always valued participatory approaches, co-production, and learning from those whose expertise is grounded in experience. For example, over 10 years ago now, I worked with Jane Seymour on a project where older people representing diverse community organisations were supported to become Advance Care Planning ‘peer educators’. They disseminated what they had learned to their peers, essentially becoming their own agents of change. It was a great project to work on and sat firmly within a public health palliative care framework, even if we didn’t know it at the time!
The need for initiatives rooted in existing community supports, rather than health services, was also the conclusion of our NZ research exploring older people’s experiences of bereavement support. And more recently, our work co-producing palliative care resources to support Māori and Pacific family and whānau carers also aligns well with a public health palliative care approach. Crucially for us, the approach is consistent with indigenous research methodologies and the bicultural framework that informs the work of our group.
However, as a critical social scientist, I am not one to merely accept a new paradigm without reflection. I see my role as asking (sometimes difficult) questions. And trying to help people recognise, and potentially challenge, the ‘taken for granted’. I’m also always keen to see how ideas and theories generated within academia can make a difference in the real world. So it is within this context that I framed my response to Kerrie’s question. The first part was quite straightforward. I think where we want to be is that public health palliative care approaches become the norm. That they work alongside, and complement, more traditional service-based responses. It would also be my hope that community-based initiatives are led by those communities, rather than by professionals. This will require professionals to work alongside and support, but not take over. Questions of power will therefore be paramount. And I think there are other questions we need to be asking as well.
Indeed, the conference provided a great opportunity for reflection. It prompted many discussions with colleagues from around the world with diverse knowledge and expertise as to where public health palliative care is now, as well as where it should be going in the future. I have drawn on these conversations, and my own thoughts, to identify a number of key developments I think would help support the changes many of us would like to see achieved in 10 years time.
Firstly, I think there is a need for more conceptual clarity. At the most fundamental level, and as identified by Colleen Demper’s great work, there is no single ‘public health palliative care approach’. Indeed, it was clear at the conference that people had different understandings of what they meant by ‘public health palliative care’. Most fundamentally, different conceptualisations of both ‘public health’ and ‘palliative care’ were in evidence. The boundary between initiatives described as public health informed, and more ‘traditional’ palliative care approaches, was also sometimes unclear. For example, some of the initiatives presented were very rooted in existing health structures and nearly all were professionally led. Whilst very valuable, I was left to wonder whether they truly represented a shift from the ‘medical’ to the ‘social’. However, as Kerrie Noonan argued in her plenary, the public health palliative care approach is still evolving. We are only at the very start of what everyone hopes will be a transformative process. A process which I believe must be supported by rigorous debate and critical reflection.
Libby Sallnow and Joachim Cohen’s plenary was very helpful in terms of describing, and highlighting the particular strengths, of ‘traditional’ and ‘new’ public health approaches within a palliative care context. They argued convincingly that these are highly complementary. That we need to focus on areas of commonality, not get hung up on difference. I agree, but the clarity they provided also needs to be in evidence elsewhere.
The need for clarity also extends to key concepts underpinning the public health palliative care approach. For example, in my presentation about ‘the role of community for people dying in advanced age’¹ (from our Te Paketanga: living and dying in advanced age study), I discussed the problem of what we mean by ‘community’. To inform this work I reviewed all research which made mention of ‘community’ in the public health palliative care literature (identifying papers via Colleen’s review and hand searches). At that time, only one study clearly specified how they understood ‘community’ (allowing research participants to define community in their own terms). The way that most of the work had operationalized community was also typically limited to personal, largely place-based, networks. In our work, we drew on the geography literature to much more explicitly define our topic of inquiry. This opened up possibilities. We explored communities of ‘place’, ‘interest’, and ‘identity’, pointing us to further potential avenues of support. However, we only touched on the extensive literature developed in other disciplines and this warrants much further interrogation. We need many more papers like this one led by Libbly Sallnow – which helps develop conceptual clarity regarding ‘community engagement’ in end of life care. A similar approach could helpfully interrogate other key concepts, such as ‘social capital’, ‘social networks, and ‘community empowerment’.
This highlights a need for further research. Indeed, it was evident at the conference that the evidence base is not keeping track with practice and policy developments. Whilst there was some great research presented, we need to do more. The research agenda as I see it includes building theory, both conceptually as I note above, as well as in relation to the processes by which we hope change will occur. Also, compassionate community interventions are by necessity multi-faceted and complex. So we need to describe them well. If they do work, we need to have the ability to identify why. And for whom. With so many good examples of local community initiatives presented, identifying transferable principles to support developments in other regions and countries would be incredibly helpful. So doing would involve capturing the socio-cultural context within which initiatives operate, as well as attending to diversity. In particular, most people with palliative care need are older people. Frailty, dementia and the social context of ageing are highly pertinent issues – but were not discussed at the conference.
I was also left feeling that we need to know more about the (diverse) preferences and experiences of those individuals, families, communities, and populations to whom ‘compassionate community’ initiatives are targeted. This has been highlighted in our Te Pakeketanga study, as well as our on-going research exploring social connectedness amongst older people from different cultural groups. Our participants very clearly wanted to exercise their own autonomy and not merely be the recipients of external ‘intervention’, however well meaning. For example, in relation to strengthening social networks, we found a real desire for the development of reciprocal relationships, as opposed to just social contact per se. Interestingly this work resonates with that conducted by Libby Sallnow within a very different context. Reciprocity was also inherent in the inter-generational project which formed one strand of the fantastic ‘DöBra’ research programme, presented by the team led by Carole Tishelman and based at the Karolinska Institute in Sweden. Their symposium was one of my highlights of the conference.
A further concern I had was the well meaning, but rather uncritical, assertion of the need to ’empower’ families to expand their role in providing end of life care. To take on tasks which, in most countries, are still the remit of professionals. That family carers need further support is absolutely not in doubt. However, I think we need to pay much closer attention to the role families actually want to play. For example, I heard several mentions of the need for families to be ‘allowed’ to administer medications for people dying at home (in countries where this is not current practice, such as the UK). However, our research urges caution. The following story, for example, is taken from our Te Pakeketanga study and involves two sisters who reported a very traumatic experience when administering medication to their father.
“That last 24 hours was very distressing and that coloured everything else for us…Dad’s end of life, his last hours, were really traumatic….I rang the hospice and they said “Just get two different types of medication and put them into the syringe and give it to him”. But neither of us had ever given an injection before. He flinched. And I am just really haunted by that flinching”.
This video clip presents this story in our participants’ own words, but delivered by actors. It forms part of the film of our findings: Farewell, Haere Atu Ra.
In the last session, we were asked if we thought public health palliative care is a ‘social movement’. A good question. My response was that this can only remain an aspiration without the full engagement of consumer and community activists. The vast majority of presentations at the conference were delivered by clinicians/and or researchers and I was only aware of one consumer presentation (although there may have been others I missed). This may not, of course, represent the full spectrum of work that is going on within communities. Rather, it may reflect the need for better funding structures to support consumers and community representatives to attend conferences. However, I think it deserves attention. The principles of participation and co-production which underpin public health palliative care approaches should inform not just individual projects, but also the shape of the ‘social movement’ public health palliative care aspires to be. As our colleague, palliative care consumer activist Ros Capper argues, there is always an elephant in the room at palliative care conferences:
The second unspoken issue for me related to gender. Work we did led by Tessa Morgan has highlighted the fact that palliative care is deeply gendered. But we don’t discuss it. Most providers of palliative care – both within a family and professional capacity – are women. And women have different (fewer) choices available to them at end of life because, as Lisa William’s study showed, ‘it’s the wife that has to look after the man’. I think there’s a real need to reflect on what this means for public health palliative care approaches which foreground community and family support. And to remember that both ‘community’ and ‘family’ support typically equal women. As Lisa leaned over to me and whispered at one point ‘are we just assuming that women are going to pick up this work, unpaid?’ I don’t know. Are we?
This, and much more, can be discussed at the next International Public Health Palliative Care Conference, to be held in Sydney in 2019. I’m looking forward to it already.
¹ Gott M, Wiles J, Moeke-Maxwell T, Williams L, Black S, Kerse N, Trussardi G. ‘What is the role of community for people dying in advanced age?’ Palliative Medicine. In press.
‘Te Pakeketanga: Living and Dying in Advanced Age’ was funded by the Health Research Council of New Zealand.
‘Social connectedness amongst older people from diverse cultural groups’ is being funded by MBIE, Ageing Well, National Science Challenge.
For further information, including full texts of any of the papers mentioned, please contact: firstname.lastname@example.org