As we prepare for the launch, on April 30th, of the Oxford Textbook of Public Health Palliative Care, Dr Julian Abel shares some thoughts about the blind spots of traditional models and the importance of adopting a public health approach. Further information about the launch is to be found at the bottom of the article.
Over the last 60 years Palliative care has done an enormous amount to relieve the physical, social, psychological and spiritual suffering of people who have a terminal illness.
The achievements are immense and millions of people have been helped. The help has gone beyond symptom management in these four areas, improving communication throughout medicine.
And yet … despite everything that has been achieved, the possibility for further development outweighs what has gone before.
The very limited palliative care paradigm excludes more people than it includes.
To clarify, it is worth looking at the four major blind spots of palliative care in order to be able to understand this limited perspective
1/ Deficit focus rather than living well – the role of social ecology
Palliative care provision has made an enormous assumption. Control of symptoms, whether these be physical, social, psychological or spiritual, have been the main outcomes of palliative care provision, in the belief that good quality of life is found through control of symptoms.
This is an enormous assumption to make, for it is only a part of the overall picture. The research literature on what living well means in the context of terminal illness, both for the person with the illness and the network of care that surrounds them, is not just sparse, it is absent.
We (palliative care providers) have focused almost exclusively on needs and symptoms, and have not asked what living well means.
Human beings are social animals. This is built into our evolutionary history. The impact of sociality is so deep and profound it helps us live longer lives.
The size of this effect is larger than giving up smoking, drinking, diet exercise and far outweighs the treatment of high blood pressure.
This is because it is a biological phenomenon, with pathways everywhere we look. Good social relationships are a major evolutionary pressure giving a survival advantage not just to individuals but whole communities. Conversely, people who are lonely die prematurely.
Living well is to be found in social ecology, the people we know and love in the places we know and love.
Palliative care provision has focussed mainly on people who have an incurable cancer diagnosis. Only 25% of the people who die have a diagnosis of cancer and not all of these receive palliative care. What happens to the other 75%?
If palliative and end of life care is to be truly whole population based, for all people who die from any cause and the people who surround them, it should be for everyone. This is irrespective of age, diagnosis and cause of death whether this be sudden or predicted. It also includes diversity of race and gender, and the structural vulnerabilities to be found in prison populations and homelessness amongst others.
The social mortalities and morbidities of grief and loss are severe. They include 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.
Not only can most of these impacts last for years, many can be handed down through generations. Traumatic circumstances of dying and loss can affect the expectations and quality of death for all those concerned, both for dying and caring people.
The development of bereavement support, the major paradigm of the model of care, has been both professionally and psychologically dominated and excludes more people that it includes. Again, assumptions have been made by making use of a limited perspective.
Grief and loss have been part of human existence for as long as we have been human. Cultural and social sources of grief support have been embedded into all human cultures.
The compassion and kindness shown by the community that surrounds us is instrumental in helping us through periods of grief. Considering a biological social model is helpful. Love and compassion have biological impacts with profound effects both for our physical well being and for our psychological state.
Sociality is fundamental.
The Nice Model for Bereavement suggests that about 10% of all bereaved can be classified as severe and in need of professional bereavement support.
A further 20 to 30% have a moderate bereavement reaction which can be sufficiently ‘treated’ through groups led or supported by professional bereavement services.
And yet 100% of people need the love and support of the people around them at a time of loss. Once again, professional services are seen as the pinnacle and an assumption is made that community sources of bereavement support just naturally happen.
Through the professionalisation of grief and loss support these community sources have disappeared. A wasteland has been left behind where the majority of people who suffer bereavement are insufficiently supported by the communities in which they live, work and are educated.
It may well be that natural sources of grief support are more effective than professional ones. Perhaps those most severely affected by grief would be better served through a social model of bereavement rather than a psychological one.
The assumption that more severe forms of bereavement reactions need professional support is not based on research.
This takes us neatly into the fourth major blind spot, that of research.
The narrow professional paradigm of palliative care is equally pervasive in research. Research is dominated by using single outcomes, proving the link between cause and result.
This is a very limited perspective on assessing what matters most to people and what makes the biggest difference. This cause and result emphasis is favoured by grant making bodies and journal editors, confining research to look at questions that do not recognise the importance of social morbidities and mortalities.
Inclusion of a much broader perspective, to be found in public health palliative care, allows for outcomes to be emergent, may happen over a number of years and may be found in places not usually sought by health services research.
These social mortalities and morbidities surrounding death, dying, loss and care giving are severe, last for years and may be passed down through generations. New research methodologies and epistemologies are needed to be able to tackle these major impacts surrounding the consequences of end of life, going beyond existing health service research models
Public Health Palliative Care, why it matters:
Can we imagine a model of palliative care that addresses these blind spots and truly allows us to earn the title of palliative and end of life care for all?
Many of the answers can be found in public health palliative care, developed over the last 25 years, and founded on the principles of new public health. These are the practice methods of community engagement, development, prevention, harm reduction and early intervention.
Professor Allan Kellehear initiated and developed this approach, has written articles and books, given presentations and developed policy from this starting point.
Public Health Palliative Care can be viewed from the perspective of 3 main areas
1/ The first is that it includes a social, relationship paradigm.
This is framed in the context of social ecology, the people we know and love in the places we know and love. All of the environments we find ourselves in, our workplaces, our educational institutions, our places of worship, our public spaces as well as our communities and neighbourhoods, are places of support, where good relationships can be developed.
We all undergo the experiences of death, dying, loss and caregiving multiple times in our life until our own final one. It is everyone’s responsibility and the difference we can make to each other is enormous.
This difference is not just about symptom control, it is about love and laughter, about courage and resilience, about the positive things that make life good and can arise out of the difficult circumstances found at end of life.
2. Second is that public health is population based.
No one is excluded. Generalised solutions, sought by health policy makers, applied en masse to whole communities, regions and even countries, go against the practice methods of participatory community development. Solutions are personal and local and dependent on people and culture. This principle is applicable across whole populations but the practice is at a local level.
3. The third principle is that of equity.
People are not excluded by age or diagnosis, by diversity or structural vulnerability. Every place has possibilities of love and support, integral to any care given. The Compassionate City Charter describes the 13 domains of action, to be applied at a local level, to make care and support inclusive.
By considering these three areas together we build a model in which the relationships between community, the civic sector of life, and specialist and generalist care, interact in order to care for, cherish, and provide mutual support for, all undergoing experiences related to death, dying, loss and caregiving.
In this way, the professional model of symptom control, can extend beyond limited confines. It is not that symptom control is not important. It is, but it is not even the major part of the whole picture.
Rather, end of life incorporates life as a whole, both the positive and the negative, meaning and value and contextualised in the context of the culture in which people live.
The Oxford Textbook of Public Health Palliative Care
Edited by Dr Julian Abel and Professor Allan Kellehear, the Oxford Textbook of Public Health Palliative Care will be published on April 30th 2022.
This book is the first presentation of the whole field, drawn together in one volume.
44 different authors from around the world contributed to the 30 chapters. It is comprehensive. It is divided into six sections:
1/ The case for public health palliative care;
2/ Basic concepts and theories;
3/ Basic practice methods;
4/ Population based approaches;
5/ Evidence base and
6/ Education and training.
Embodying the principles described above it points towards a way forward for palliative and end of life care.
It is not that we have to abandon what has already been achieved. Rather, it is time for a new growth, beyond the narrow confines of service provision, towards a more meaningful human model of care that encompasses health and well being in addition to symptom science.
The ramifications are immense. Policy and provision will need to change. Service redesign, one of the five principles of the Ottawa Charter for Health Promotion, will need to be built into all services that are engaged in death, dying, loss and caregiving.
And most of all, it will need the cooperation of communities and services, the civic sector and specialists together, that will ensure end of life is everyone’s responsibility.
The on line launch of The Oxford Textbook of Public Health Palliative Care is on May 11th 16.00 to 18.00 BST and May 12th 08.00 to 10.00 BST. These launches are set at times that are suitable for the multiple time zones across the world. Tickets are free. Please sign up here: Oxford Textbook Launch events
Book authors talking about their chapter can be seen here: Oxford Textbook Authors