Community Networks the Best Way to Give Dignified End-of-Life Care in People's Homes; End-of-Life Delivery Plans Should Now Be Submitted by All Health Boards in Wales. Simon Jones, Marie Curie's Head of Policy and Public Affairs in Wales, Looks at Why This Is an Issue of Public Health
Byline: Simon Jones
EACH of the health boards in Wales should have now submitted their endof-life care delivery plans. They should follow the direction set by the Welsh Government's plan but must also take account of local needs and circumstances.
The Welsh Government's end-oflife care delivery plan placed great emphasis on enabling people to die where they wish, which, as people consistently tell us is, overwhelmingly, at home.
Health Minister Mark Drakeford's focus on treating people at the end of their lives as people and not patients raises some interesting and important issues about how end-of-life care is delivered and organised. It also has wider implications for health care and other social services in Wales.
At Marie Curie, the clinical palliative care a person receives at the end of their life is critical to them.
Getting the drug regimes right to control pain, having the appropriate medical interventions to assist with breathing and managing nourishment and hydration, are all very much part of the care needed.
However, much more support is needed, both for the person at the end of their life and those around them, at this very traumatic and emotional time - support that leaves a legacy for the bereaved which they can look back on with fondness and, yes, perhaps with a smile and good memories.
A clinical team of health professionals cannot deliver the latter. It can be part of it and support it but ultimately it is the social networks around the individual which will secure it.
It is in this context that the concept of a public health approach to palliative care has been gaining ground over recent years. It is also described as health-promoting palliative care and is very much at the heart of an approach to palliative care that is rooted in community development and building social capital.
A holistic view of palliative care, one which roots itself in the community, is at the heart of the Welsh Government's end-of-life care strategy and one which Marie Curie hopes is reflected in the local health boards' plans across Wales.
It is an approach that Marie Curie and the wider end-of-life care health sector go some way to delivering. However, delivering the communityfocused end-of-life care will, I believe, require us to further develop this approach and think more radically.
At the same time constraints on resource could well pull in the opposite direction, leading to service providers concentrating on what are conventionally seen as "core" clinical services. This must not be allowed to happen.
There are some interesting examples of this community-focused, health-promoting and public health approach to palliative care.
In Kerala, India, huge strides have been made in palliative care through a system described as the neighbourhood network in palliative care. Here volunteers who can commit two or more hours a week are trained to identify problems faced by people at the end of their lives in their communities and to actively intervene with the support of clinical teams.
By 2007 this approach was providing an estimated 70% coverage within a population of 12 million, where the norm across the rest of India was 1%.
Another example, in a more developed healthcare system, is in Sydney, Australia where Home Hospice (now LifeCircle) has developed a programme which trains people who have experience of caring for someone at the end of their life to become mentors who can be "mobilised" within the community to provide support. This focuses on building a network of family, friends and neighbours who can provide support.
Marie Curie's Helper programme has characteristics of both of these, and many other hospices will provide support through similar approaches, invariably using volunteers. …