The new training curriculum for palliative medicine specialists in the UK is in place for August 2022. The new curriculum, amongst other changes, includes the introduction to public health palliative care. There is a specific section, outlined below as well as themes throughout the curriculum.
Public health and health promotion in end of life care
Examples of areas to be explored
- Understanding of the context in which Palliative Medicine is practiced, recognising the benefits of the biomedical approach of harm reduction and the opportunities of health and well-being promotion, e.g. making every contact count
- Understanding of the concepts of health and well-being promotion at the end of life to improve access and experience of outcomes; including the positive aspects of caring and support at the end of life
- Awareness of the role of community engagement and development of new models and systems to improve health and well-being for patients with life-limiting conditions and those close to them
- Awareness of the range of community engagement initiatives nationally, including compassionate communities and how these interface with formal services
- Awareness of the role of palliative care services in promoting and supporting community engagement, including: (i) working in partnership with communities; (ii) understanding local needs and resources and (iii) meeting these needs through a combination of professional and community support
- Awareness of the specific needs of those with life-limiting illness in hard to reach groups, e.g. the homeless, prisoners, traveller communities, people with learning disabilities and mental health issues, teenagers and young adults
Why is public health palliative care now part of the specialist training curriculum for people who want to become specialist palliative care clinicians? The answer lies in two places. The first is found through looking at equity. The second is through considering what health means in the context of death, dying, loss and caregiving.
Why is equity so important?
Rather than looking at what a great job palliative care services do, the question can be asked ‘who misses out?’ This is a revealing question. Who is left out and in what settings?
Palliative care services are predominantly for people who have a diagnosis of cancer. What about all the others? Only 25% of people who die have cancer and not all of them are seen by palliative care.
Palliative care teams have worked to increase the breadth of diagnoses seen, but this effort has mainly been in hospitals rather than in hospices and community teams. Death does not differentiate by diagnosis. What happens to people who have sudden death?
Investigating further, does death just affect the person who died? What about the social morbidities of people affected by death, dying, loss and care giving? These include school refusal, impact on work, sexual acting out, anxiety, depression, loneliness, drug and alcohol addiction amongst others. And there are significant physical morbidities that goe hand in hand with caring, grief and loss, as well as mortalities from these social morbidities, resulting in premature death. Furthermore, these all happen irrespective of cause of death.
Inequalities exist not just through age or diagnosis. Diversity is an enormous problem in terms of access, either directly or indirectly, in palliative care services. Poorer access is present by ethnic background, by gender, by age, in LGBQT+ populations, in prisons, people with learning disability and many others. Ibram X Kendi, professor, activist and author of How To Be An Antiracist, wrote in The Guardian
“There is no such as ‘not racist’. If you are actively challenging racism, congratulations, you are being an antiracist. But if you are doing nothing, while trying to claim some kind of neutral territory between racist and antiracist, you are complicit in allowing the structural problem to persist. To do nothing in a society of injustice is to uphold racism. To do nothing in the face of racism is to be racist.”
The same principles of wanting equity irrespective of diversity and structural inequity, apply and is covered by the term intersectionality.
In other words, lack of equity is everywhere. It is a matter of social justice and moral responsibility. Palliative and end of life care is everyone’s business because we are all in it together, and we all experience it. Hard to reach groups, a terrible phrase, are actually the majority of both people who die and their supportive networks.
Palliative care leaves out more people than it includes.
Health
What on earth is health in the context of palliative care? How can someone who is dying be healthy?
Health is so much more than physical well being. It is helpful to think about this from a biological, evolutionary perspective. Survival of the fittest is taught in schools as a fundamental process of evolution. Never mind the implications this has on power relationships, it ignores the social nature of human beings.
Over the last 20 years there has been increasing interest in the positive evolutionary pressures of cooperation, care, compassion, friendship and community.
With the advent of functional MRI and PCR testing, over the last 20 years it has become easier to look inside the ‘black box’ of the skull and the cell. It is now possible to map how the brain is wired for compassion, and the multiple pathways and impacts this has on our biology, including at a genomic level.
The work of Steve Cole(Cole, 2019), John Cacioppo (Cacioppo and Cacioppo, 2018, Cacioppo et al., 2015), George Slavich (Slavich, 2020) and others has been remarkable in mapping these pathways. And the work of Julianne Holt- Lunstad (Holt-Lunstad et al., 2010) has shown that good social relationships are more effective at reducing our risk of dying, even over a short 7.5 period, than giving up smoking, drinking alcohol, good diet, healthy exercise and far more effective than the treatment of hypertension.
In other words, our biology is social in nature. We get meaning and value from relationships. A sense of well being, a sense of being a valued person in this world, comes from the people and places we know and love. Relationships play a fundamental role, not just to absence of disease, or reduction of symptoms but to a sense of health. This is a sense of being held in the hearts and minds of the people around us, and holding others in our own hearts and minds.
The amazing assumption made by palliative care teams and services is that good symptom control, whether these be physical, social, psychological or spiritual, and addressing of needs results in good ‘quality of life’. Palliative care services have been based on this assumption. However, it is not just that this is not the case, scouring the research literature for evidence of what living well means in the context of a terminal illness, not just of the person with the illness, but those around them as well, is not just scarce. It is absent.
Another problem arises because of this assumption. Palliative care services have not asked whether their services are either appropriate or wanted. This has exacerbated the problem of equity of access. Through just assuming that what palliative care provides is best ignores what is already good in communities.
When Holly Prince, a First Nations palliative care researcher in Canada, was asked about where she would like to see palliative care services be in 10 year’s time, she hoped that the compassionate communities movement will have caught up with what already happens in many indigenous communities. It is something they already do well.
The starting point for palliative care services should be ‘what do communities already do well?’ From there, it is possible to work out what can be done to support this further, and what can be added to help. What can be added needs to be determined by communities, rather than services making assumptions about what they have to offer is actually wanted or indeed useful.
The solutions
Public health palliative care works on the two fundamental problems outlined above. Firstly, a population based approach, where palliative and end of life care provision is for everyone, not just the select few, is the starting point. And secondly, the social nature of humans is seen as being fundamental to the theory and practice of supporting people undergoing experiences of death, dying, loss and caregiving.
This social nature opens the possibility of social actions, in the form of compassionate communities and cities, taking place across whole areas. The relationships between palliative care services and communities becomes fundamental, with services asking how they can support communities.
In summary, it is not just that palliative care services fail to support a minority of people, the reality is that the majority of people miss out.
Through cooperation, a new way forward is possible. Death, dying, loss and caregiving, is for all by all. Public health palliative care is how we achieve this. It is vital that future specialists in the field know about this and can participate in it.
Compassionate Communities UK has put together a basic course for Specialist Registrars in training. This same course is available to MDT members. The knowledge and practice of public health palliative care has become part of what it means to provide population based palliative and end of life care, and is therefore part of everyone’s practice.
To find out more about Specialist Registrar training, please visit https://compassionate-communitiesuk.co.uk/specialist-registrar-training-2/
The same course is open to Multidisciplinary Team members – https://compassionate-communitiesuk.co.uk/2022/05/02/clinical-mdt-programme/
Dr Julian Abel
Director, Compassionate Communities UK
email – julianabel@compassionate-
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CACIOPPO, J. T. & CACIOPPO, S. 2018. Loneliness in the modern age: an evolutionary theory of loneliness (ETL). Advances in experimental social psychology. Elsevier.
CACIOPPO, J. T., CACIOPPO, S., CAPITANIO, J. P. & COLE, S. W. 2015. The neuroendocrinology of social isolation. Annual review of psychology, 66, 733-767.
COLE, S. W. 2019. The conserved transcriptional response to adversity. Current opinion in behavioral sciences, 28, 31-37.
HOLT-LUNSTAD, J., SMITH, T. B. & LAYTON, J. B. 2010. Social relationships and mortality risk: a meta-analytic review. PLoS medicine, 7, e1000316.
SLAVICH, G. M. 2020. Social safety theory: a biologically based evolutionary perspective on life stress, health, and behavior. Annual review of clinical psychology, 16.
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