Best care for the dying patient

What we want for the people we love and for ourselves is to die in the place of our choice and to experience a “good death”—dignified, free from pain, and supported by those we love. Ascertaining and documenting a patient’s preferred place of death is regarded as an important marker of the quality of care.

Around 500 000 people die in England every year—53% die in hospital, whereas 63% indicate a preference to die at home1; 92 000 have an unmet need for palliative care.2 Health inequalities, based on postcode and diagnosis, are common in end of life care. The case for improving end of life care is therefore compelling.3

Death at home is the “mantra,” but are we right about this? A recent systematic review of international evidence provided important insights about preferred place of care for dying patients.4 It found that most people express a preference to die at home, including those with advanced disease. However, the review recognised that preferences can depend on the quality of care that patients and carers have experienced.

For patients with cancer, the provision of home palliative care is cited as a key enabler in achieving a patient’s wish to die at home. There is still scope for improvement in home palliative care, without increasing costs, but further work is needed in patients without cancer, in terms of clinical outcomes and costs.

A recent BMJ article stressed that most people would prefer to die at home given “adequate support,”5 and that policy across the world is focused on providing this support. As our society continues to age the current level of deaths within hospitals will become unsustainable.

We need a paradigm shift within our healthcare system: not only to value the way we care for patients at the end of their lives but to enable more people to be cared for in the community. This vision was first articulated by Cicely Saunders when she founded the modern hospice movement, countering the prevailing “cure” culture of medical practice in the 1960s. Her vision was always to integrate the hospice model of care into the mainstream NHS.

The key question is: what, in all environments, constitutes adequate support? To answer this we must understand what constitutes best care for the dying patient. International and national evidence identifies 10 key elements of care necessary for achieving best care for the dying patient.6 7 These elements are irrespective of the place of care and transcend national and cultural boundaries.8 9 They are also reflected in General Medical Council and National Institute for Health and Care Excellence guidance.10 11

Our main challenge is to consistently deliver these key elements of care, wherever care takes place. We know what we need to do, so what is stopping us from doing it?

Several improvements are needed as a matter of priority. Firstly, we must transform primary and community care to provide the support needed to enable home deaths—appropriate health and social care services are needed 24/7. At the same time, care for people who die in hospital must continually improve, with hospital palliative care services available seven days a week.

Secondly, we must continue to promote societal debate about dying to break the taboo on talking about death,12 so that more people plan for their death (http://dyingmatters.org/).

Thirdly, we must strengthen education and training for healthcare professionals, particularly those working as generalists, to recognise the dying patient. The systematic use of advance care planning would be a “game changer.”3

Lastly, we must work to achieve an increase in research and development funding for end of life care—only 0.24% of the £508m (€590m; $758m) awarded for cancer research is allocated to research into palliative and end of life care.13

There is reason to be optimistic. Deaths in the usual place of residence continue to increase.1 Britain has been deemed to have the best palliative care services in the world.14 Now we need to consider how to increase their reach.

Newly established clinical commissioning groups could offer a holistic approach by using prognostic indicators guidance to systematically identify dying patients among those with long term conditions, dementia, and frailty.15

We have a huge opportunity to take our next big steps to transform end of life care if we will only come together to take it.

A bad death that was avoidable is a poor outcome and must be seen as a failure. We must take courage as ever from Cicely Saunders, who faced opposition in her work to transform care through hospices.16 17 If her vision is to be realised, we must integrate the model and values of hospice care into the mainstream NHS and deliver best care for dying patients regardless of place of care—something our patients not only deserve, but now demand.