Merryn shares reflections of the recent Public Health Palliative Care International Conference
I often feel like a failed geographer because I cannot read a map. But, as I keep trying to convince people, a geography degree has great value even for those of us with no internal compass. And – this is always a hard sell – geography provides a solid foundation for life as a palliative care researcher. Ultimately the environment – natural, built and social – profoundly shapes how we age, how we die, and how we grieve.
During my last (gulp) 25 years in palliative care research I have often felt like an outsider in bringing this perspective to bear on how I approach my work. I have felt more synergy with critical gerontologists – if only they talked about death and dying…! But at the recent PHPCI2019, I felt many points of connection, particularly around recognition of equity and social justice as key concerns for palliative care.
Physical and social space
The importance of physical and social space in creating inequity was recognised in a number of presentations and (excellent) keynotes. Allan Kellehear, repeatedly reminded us that “if you change the setting, you change the outcomes”, a mantra he is enacting through supporting the growth of compassionate cities and (Cymru am byth!) countries (Go Wales!).
Jenny Donovan put the built environment at front of centre in her thoughtful plenary. She stated that we “wear our surroundings like a cloak”. Certain areas of cities are out of bounds to us because of factors such as our age, gender, sexual orientation or health status. But the environment can also be modified to memorialise and heal: the image of the Sri Lankan garden where flowers bloom once a year on the anniversary of the devastating tsunami will stay with me for a long time.
Suresh Kumar spoke like a geographer in problematising the often utopian view held of ‘community’. Communities are not monolithic: they comprise members and groups with different, and often conflicting, ideas and interests. Navigating factions and power dynamics remains a key challenge to building capability within our communities which, he reminded us, should be the ultimate goal of compassionate communities work, rather than just delivering on a single project. And as Tyla Harrison-Hunt argued in his very moving plenary about the Christchurch terror attacks – “you can’t force a sense of community. If it comes, it comes”.
Suresh also spoke of the need to connect with what it is that motivates people to engage with community – and with compassionate community work – specifically. Similarly, Kelly Gourlay told us we had to engage policy makers to support structural change by asking them – “how can we make you look good?”
Libby Sallnow picked up on the idea of relationships, arguing they need to be recognised as process and outcome in public health palliative care work. This is refreshing as relationships are central to effecting real world change. However, their importance often goes unrecognised within the biomedical paradigm which frames most palliative care research, practice and policy.
Relationships between people, the natural environment, and spiritual realms are at the heart of indigenous cultures. Again I reflected on how much there is to learn from these cultures not only for palliative care, but also at a fundamental level, for us as global citizens who are rapidly destroying our environment. I felt privileged to Chair the plenary where Susan Moylan Coombs and Tess Moeke-Maxwell reflected on end of life care customs and experiences for First Nations people in Australia and Māori in Aotearoa, New Zealand, respectively. Susan challenged the audience to consider why Australia being home to the oldest living culture on earth is not a cause for celebration.
Colonialism and privilege
Colonialism was very much front of mind when Andrea Grindrod eloquently reminded us that “vulnerable citizens and populations are created through the shortcomings of our social structures and systems”. Andrea also called upon us to be far more critical about end of life “choice”. Whilst policies are peppered with ‘choice’ there is no recognition that choice is socially determined. Some people have not had choice in how they live, nor will they have choice in how they die. Tess identified structural (and often times racist) barriers to Māori enacting their end of life care customs within Western healthcare settings. And in her powerful plenary Kelli Stajudhar starkly stated: “for some structurally vulnerable populations death will come in a car, in an alleyway, a shelter.” Where is the choice there?
Kelli also challenged us to “check our privilege”. Firstly, we need to recognise that people who receive palliative care are privileged. Research, including our recent VOICEs project in Auckland, shows they are consistently more satisfied with end of life care. Secondly, they are also are more likely to have garnered privilege throughout their lives; palliative care access is associated with socio-economic status, majority ethnic status and family support. Finally, people who benefit from palliative care as a service and research endeavour most closely resemble the palliative care community ourselves. But it’s very hard for us to see this because as Kelli so powerfully stated:
‘Privilege is as invisible as air until you don’t have it and can’t breathe’.
Which brings us to where we need to grow and develop. Kerrie Noonan asked us at the start of the conference to reflect on the gaps. It was evident that a key gap remains a need to better support and represent the service user voice. Two excellent presentations on mental illness and palliative care by Jed Jerwood and our very own Helen Butler reminded us that there are some voices we just do not make the effort to seek out – Jed’s research was the very first to explore experinces of palliative care for people with mental illness.
I am excited by the possibility that palliative care can learn from the longstanding tradition of prioritising service user leadership in mental health, as well as the attention to power dynamics between ‘researcher’ and ‘researched’ in Kaupapa Māori and other indigenous research approaches. This means recognising the value of different knowledges and different research approaches. This may be challenging for mainstream palliative care resarch because – as Samar Aoun and Kelly both reminded us – the Randomised Control Trial remains “gold standard”.
Indeed, it will be interesting to see whether the ideas raised here can influence the trajectory of the wider discipline of palliative care. As Allan said:
“Social justice is a new concept for palliative care”. We need it to become a central concern which means ensuring public health palliative care doesn’t become a renegade splinter group.
Kerrie asked us “how do we ensure our disruptive ideas aren’t squashed?” This will remain an ongoing challenge which we will need to tackle in multiple ways – from advocacy to art. Peta Murray and Nikki Reed really did succeed in demonstrating the power of art in “getting below the surface to what really matters”.
If you’ve read to the end of this you may think I’ve wondered a long way from geography. But exploring equitable access to scarce resources is central to much geographical thinking. Allan argued we need to get public health more engaged with palliative care. I would add the need to identify champions in other aligned disciplines For example, there could be great benefit in engaging economists given that the economics of palliative care remains a very small sub-discipline within which the work of family carers and communities is almost entirely invisible. We also need more gerontologists, particularly of the critical variety: although ageing was a key conference theme we received few abstracts explicitly on the topic. And herein lies another challenge – academic scholarship operates in siloes that are not reflective of how we live our lives. But it is in those intersections that creativity and innovation occur.