“Palliative care has some major blind spots”

Mark Taubert (MT) speaks to Julian Abel (JA) ahead of the launch of the Oxford Textbook of Public Health Palliative Care

Mark and Julian

MT: Hi Julian, what’s going on?
JA: I’m good and it was nice to meet you in person at the recent Palliative Care Congress in Telford.
MT: I beat you 10:7 in the table football, wasn’t sure if you were still talking to me.
JA: All forgiven!
MT: So, you have co-authored a book, this is going to be a controversial one, I hope?
JA: Well, yes and no, I think it just puts in writing what the issues are in end-of-life care and how we can tackle them.
MT: Tell me more!
JA: There is a lot to celebrate about the historical development of palliative and end of life care. The relief of suffering, physical and emotional, for people dying from terminal illnesses has been immense and helped millions of people world wide. The impact on medicine as a whole has also been enormous. In particular, open acknowledgement of the reality of a terminal illness, conversations about dying and plans that are formulated from this have helped relieve anxiety, reduce unnecessary and unwanted interventions and have influenced communication skills throughout medicine. As David Bowie says ‘ I watched the ripples change their size, but never leave the stream of warm impermanence.’
MT: I like where you went there.
JA: Time may change me, but I can’t trace time. Essentially, in spite of these enormous achievements, what has been left out is greater than what has been included. To humans, land is more important than sea, and this is what we notice looking at globes. Yet land only accounts for one third of the surface of the globe.
MT: What advice would you give to people starting out in palliative care now?

JA: Palliative and end of life care has four major blind spots. Be aware of them.
The first relates to equity. The historical focus of palliative care has been on people with cancer. Only a quarter of deaths have cancer as a cause. What about those with non cancer illnesses? What about people who suffer from sudden death, from suicide, murder and accidents? Death does not distinguish between age and disease, and the experiences of grief for those left behind have a commonality. What about access to palliative care for people from diverse backgrounds and structural vulnerability? These remain problems as yet unresolved.
MT: I suppose we are trying to slowly address these, but more can be done?
JA: Yes, much more needs to be done. The second is the focus palliative care has on needs and symptoms, whether these be physical, social, psychological or spiritual. Needs naturally require professionals, experts who can relieve and respond to these needs, to provide solutions. This obsession with the negative, with what is absent, is not balanced by what is good in life, what matters most.
MT: What matters most is very individual to the person.
JA: Yes, this is about social ecology, love, laughter and friendship. It is the people we know and love in the places we know and love. Death, dying, loss and caregiving is situated in the context of social ecology. Living well, not just for the person with the illness but for everyone involved, in unexplored in the palliative care research literature. The assumption has been that addressing needs and symptoms leads to a good quality of life. But this is not the case.
MT: Ok, so what is blind spot no 3?
JA: The third blind spot for palliative and end of life care is bereavement. The practice models of bereavement emphasise after death interventions by professionals or groups supervised directly or indirectly by ‘professionals’. The basis for grief support lies in relationships, particularly those developed during the time of care. The relationships formed after the death of a loved one are the ground of living well with grief and loss. Community plays a fundamental role.
MT: So we are over-medicalising, over-professionalising something that can be done by most of us?
JA: I worry about diverting resources to professional bereavement services and whether this downplays the importance of social relationships, needed by 100% of the population rather than the small percentage of people who require professional support for when grief turns into something pathological.
MT: Ok, so what would be the fourth area to look out for?
JA: The fourth blind spot relates to the problem of research in palliative care. The limited conceptual model has resulted in a conceptual model of research that focusses on cause and effect, on single outcome measures so treasured by grant giving bodies, peer reviewers and journal editors. But death does not fit into a neat scientific category. Meaning and purpose and experience are not qualifiable outcomes to be tested by a double blind placebo controlled trial. Outcomes are not single or simple, are emergent, may take years to appear and can be found in places not currently sought through traditional, health service research lenses.
MT: I see. And how can we tackle this better? I’m busy day to day on wards, in the clinic or on-call with my patients and their significant others, so how can I learn about how to make a difference that sustains palliative care into the future?
JA: April 30th 2022 sees the publication of the Oxford Textbook of Public Health Palliative Care. Many of the problems noted above are addressed through taking a public health approach. Developed over the last 25 years, public health palliative care directly acknowledges the importance of health and well being. It is not that needs and symptom science are ignored, but they are seen in the context of health and well being, which can be found through a positive emphasis on social ecology. We are experience death, dying, loss and care giving in our lives until our own final one. It involves everyone. The positive impact of love and friendship can be found in our communities, our workplace, our educational institutions, our places of worship and the other areas outlined in the compassionate city charter. The social morbidities are addressed, of lost school or work days, loneliness and social isolation, stigma and social rejection, sexual acting out, and drug & alcohol abuse. And these coalesce, partner, or are fuelled by other well documented psychiatric morbidities such as traumatic memories of difficult deaths, depression, anxiety, despair, and suicide.
MT: Interesting. And what can we all do, not just us ‘professionals’ but perhaps the general public?
JA: The second major feature of public health palliative care is that it is a population based approach. Diversity and structural inequalities lie are directly addressed. The practices are drawn from new public health; those of community development, prevention, harm reduction and early intervention.
MT: How is the book laid out?
JA: The textbook is divided into 6 sections, 30 chapters and 44 different authors. Starting with the case for public health palliative care, it progresses to concepts and theory, basic practice methods, population based approaches, evidence base and education. The book is a marker in the sand. It is a renegotiation of the professional working space, giving primacy to meaning making and social ecology. The context for professional practice is to be found here and professional interaction with community resources of love, kindness and friendship, requires service redesign, a redefinition of power relationships and taking a population based perspective. It is likely that the practice of palliative care will change as a consequence of a more inclusive approach. The epistemology of research will grow beyond the narrow confines of clinical trials. Death will return once again to community.
MT: Thank you, Julian!
 

Further resources:

If you would like to attend the launch, please click on the link https://compassionate-communitiesuk.co.uk/services-education-events/ 

Here are some video links:

Introducing the textbook https://www.youtube.com/watch?v=7UfV8D-ZfcU&t=6s

Joe Sawyer talking about his chapter on research: https://www.youtube.com/watch?v=fty-cDUHm2Y

Polly Edmonds talking about her chapter on the specialist training curriculum  in the UK https://www.youtube.com/watch?v=GQIC9UNgyq0

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