What is public health palliative care? Dr Julian Abel  Director, Compassionate Communities UK

Public health is often thought to be solely connected to surveillance sciences of epidemiology, health service research, and historically concerning sewerage, clean water, infectious and sexually transmittable diseases.

However, public health palliative care refers to the tradition of public health that emphasises the practice models of community development, health policy, health service redesign, public education and health promotion. Health promotion is concerned with a balance between health and well-being and illness and disease.

Traditional palliative care models focus on symptom management, whether these be physical, social psychological or spiritual. The positive aspects of the consequences of terminal illnesses is often forgotten. Just as there is fear, there is courage. There is loneliness and there is love and growing intimacy. There is reminiscence and meaning making.

Public health palliative care focuses on these positive aspects of illness, not just for the patient but also for the caring network, for communities and for civic society. Health promotion is therefore possible even in the context of death, dying, loss and care giving. Physical health is only one aspect of health.

Public health palliative care also encompasses prevention, harm reduction and early intervention around the experiences of illness and disease and the social morbidities such as loneliness, job loss, school refusal, stigma and social rejection. Promotion of health and well-being aspects and experiences of end of life go together to help with the prevention and harm reduction of the social co-morbidities associated with those experiences.

Public health palliative care is about the promotion of those things together – the promotion of health and well-being, the development of the practice models that will help us do that, and the practice models that help us with prevention, harm reduction, and early intervention in this new approach.

One of the marked features of the historical development of palliative care is inequity of access to care and support. This is not just about diagnosis, it is also about gender, diversity, age, identity and other forms of structural inequality. For example, cancer deaths make up a quarter of all deaths. Yet access to palliative care has primarily been for this group. This is the case for direct and indirect contact. Furthermore, the morbidities and challenges of loss occur irrespective of cause of death or age.

If we are truly going to support people undergoing experiences of death, dying, loss and caregiving, then we need to be inclusive rather than exclusive. The problem of inequity of access to palliative care has remained largely unchanged over the last 40 years. It is a matter of social justice. We need a population-based model that will help everyone.  It is not just about the person who has got the illness, it is also about the caring network of people who are affected by that.  That caring network extends into community, it extends into our places of work, our places of worship and education institutions.  Death, dying and loss and care giving is not just a professional issue but a social issue that involves all of us.

Drawing on new public health traditions, the last 25 years of development of public health palliative care means that it is based in the history of theory, policy, practice, research and education. The main practice methods are community development, known as compassionate communities in the palliative setting, and the civic component encapsulated in the compassionate city charter. These practice methods are inclusive rather than exclusive.

Death, dying, loss and caregiving are everyone’s responsibility. We all participate in these experiences until our own final one. The foundation of meaning is contained in social ecology, relationships to people and place. Recent initiatives of advance care planning have shifted from information that health care organisations are interested in, to that of what matters most to the people with terminal illnesses and their supportive networks.

Somewhat extraordinarily, the research on what living well means in the context of terminal illness, not just for the person with the illness, is absent from the literature. Assumptions have been made that living well means the absence of physical, social, psychological and spiritual symptoms. This is clearly not the case.

Living well relates to what matters most in life, meaning and purpose. It encompasses the qualities discussed concerning love, friendship, reconciliation, and connectedness to people and place. Everyone can contribute to the universal experience of death and loss, and this can take place in the multiple settings in which we live. This is not just neighbourhoods, it includes workplaces, educational institutions, places of worship, media, community groups, museums, galleries, theatre and other creative expressions.

Finally, it is the integration of all of these components working together that brings a complete picture of public health palliative care. Rather than the often experienced silo working of individual organisations, it is the unification of them working together across organisational and community boundaries that make death, dying, loss and caregiving meaningful and as free from suffering as possible. This can be encapsulated in the New Essentials diagram

(Abel et al., 2018)

The implications are not just about health service redesign, it is also about the changes in clinical practice, at the level of individual consultations, that brings into life all of these components together.

April 30^th sees the publication of the first Oxford Textbook of Public Health Palliative Care, edited by Julian Abel and Allan Kellehear, with 44 authors from around the world. This extensive volume brings together for the first time an indepth view of the whole field.

 

ABEL, J., KELLEHEAR, A. & KARAPLIAGOU, A. 2018. Palliative care—the new essentials. Annals of palliative medicine, 7, S3-S14.