Sometimes our field is described as “palliative care” but depending on what people understand by this term, this language can cause confusion.
Though more specific definitions can be helpful, one way of thinking about “palliative care” is to talk in terms of providing ‘good care’ to people whose health is in irreversible decline or whose lives are coming to an inevitable close. Perhaps what differentiates ‘palliative care’ from ‘just good care’ is the awareness that a person’s mortality has started to influence clinical and/or personal decision-making.
However, palliative care is not synonymous with death – it is about life, about the care of someone who is alive, someone who still has hours, days, months, or years remaining in their life, and about optimising wellbeing in those circumstances.
Therefore, in Scotland, much of the care that people receive when their health is deteriorating could be termed generalist palliative care, being provided by health and social care staff to people living in the community, in care homes and in hospitals. It is palliative care regardless of whether someone has cancer, organ failure (including neurological conditions) or ‘old age’, or whether they are living at home, in a hospice, in a care home or in a medical ward, ICU or neonatal ward. Palliative care can and should be delivered alongside active treatment where that is appropriate.
Specialist palliative care can help people with more complex palliative care needs and is provided by specially trained multi-professional specialist palliative care teams who are generally based in a hospice, an NHS specialist palliative care unit or an acute hospital, but whose expertise should be accessible from any care setting and at any time.
Palliative care includes, but is not exclusively about, end of life care. End of life care is that part of palliative care which should follow from the diagnosis of a patient entering the process of dying, whether or not he or she is already in receipt of palliative care. This phase could vary between months, weeks, days or hours in the context of different disease trajectories. There can be uncertainty involved in identifying when someone might be expected to die – illness can be unpredictable, and changes can occur suddenly and unexpectedly.
The World Health Organization definition of palliative care can be viewed here: World Health Organization definition of palliative care:
More specific information about palliative care, designed for individuals, families and carers is available here: NHS Inform website.
Defining and explaining 'public health palliative care'
'Public Health Palliative Care' (PHPC) aims to understand and influence the social and structural factors that affect people’s experiences of death, dying, loss and care.
It is based on a belief that death, dying, loss and care are experiences shaped by all aspects of society including culture, economics, politics, schools, workplaces, communities and the media.
Therefore, though clinical and therapeutic interventions provided by formal health and social care services are recognised as essential in improving experiences, a PHPC approach looks further upstream and across the whole population, to how factors such as education, financial hardship, health/death literacy, and social support, can impact on the experiences someone has around deteriorating health, dying and bereavement.
PHPC is a broad field that encompasses work to effect change in a range of areas. For example, how can public policies make better provision for people who are caring, dying or grieving? How can cultures and opportunities be created so that matters relating to serious illness, dying and bereavement can be discussed and acted upon? How can communities of all kinds be strengthened with knowledge, skills, networks, resources, confidence and opportunities to support each other? What information and education will allow people to develop their personal skills and knowledge of these issues? What inequalities exist in people’s experiences and how can these be addressed?
PHPC is particularly associated with approaches such as community development, health promotion and public education. Prominent initiatives include death cafes and compassionate communities work, but PHPC encompasses much more than this including: death education courses; public awareness campaigns; funeral poverty initiatives; lobbying for policy changes; encouraging future care planning; death education and bereavement support in schools; compassionate workplace projects and more. The variety of approaches and areas of activity where change is needed means that many different institutions and communities have roles to play in PHPC.
The Scottish Partnership for Palliative Care leads and supports a public health approach to palliative care in Scotland through Good Life, Good Death Good Grief.