As the government publishes palliative care competences, Jacqueline Pooler highlights the importance of choice over place of death – and the right kinds of bed to enable this
The government’s new end-of-life care competences have highlighted once again the importance of providing high-quality palliative care (National End of Life Care Programme et al, 2009).
While there is now greater emphasis on helping patients choose where they might want to die, the details of some of the practical issues when that choice is at home need to be addressed. By scrupulous assessment, healthcare professionals, care planners and commissioners can help patients achieve their choice.
Last year, a striking advert in a magazine caught my eye. The caption was: ‘You’ve got your own bed. So why die in someone else’s?’ This was part of Marie Curie Cancer Care’s Delivering Choice Programme.
It seemed to touch at the very heart of end-of-life care in a non-sentimental, practical way. Rarely are these details of how and where one might die raised in public in such a way.
It made me reflect on three issues that are a core part of my working life and have been for many years.
First, the advertising campaign drew my attention to the intimacy of dying in one’s own bed and the powerful image that it creates. But is that the reality? Statistically, this will be an unlikely event for most of us, as the number of deaths in hospital continues to increase against a background of demographic changes.
Second, where a patient lives in a two-storey property, the progression of life-limiting disease may lead to a discussion between patient, carers and the primary healthcare team about whether a bed should be placed downstairs.
It is not merely a practical issue but rather one that is loaded with emotion and has implications that go well beyond simply rearranging the furniture.
This issue has to be raised sensitively and handled as though indeed it were a ‘breaking bad news’ scenario. ‘The bed downstairs’ is a metaphor for a patient’s deteriorating situation.
‘Having a bed downstairs’ or acquiring a hospital bed can mean a number of things to patients and their family. Disruption of the layout of the home can be difficult in a small property; it reinforces that all is not well and is possibly a warning shot that things may get worse. That sense of privacy that a ‘proper’ bedroom offers is lost.
Third, if a patient does have the opportunity to die at home – which is possible with skilled and supportive palliative care community services – in whose bed will they be?
Health and safety policies/risk assessments require that many patients being cared for at home be nursed in ‘hospital’ design beds acquired through their PCT home loans department or similar. No longer – and quite rightly too – should district nurses struggle with low divans or impossibly high springy beds.
But it is their own personal beds that patients think they will die in. If their own bed has been the one they shared with their partner, or perhaps given birth in, are we being disingenuous when we deprive patients of that last wish?
Beds which are loaned to patients tend to be of a modern type; while they do not appear quite as clinical as traditional hospital-style beds, they and the accompanying pressure-relieving mattress tend to be single. And what does a single bed say to a couple who, despite illness, have enjoyed intimacy? Are we inflicting yet another loss at a time when patients feel they are already losing so much?
Those involved in procuring equipment for patients to use at home need to think outside the framework of the single bed, and start delivering real choice for end-of-life care.
Jacqueline Pooler is Macmillan clinical nurse specialist, Hospice of the Good Shepherd, Backford, Cheshire
National End of Life Care Programme et al (2009) Common Core Competences and Principles for Health and Social CareWorkers Working with Adults at the End of Life. Leicester: NEoLCP. www.endoflifecareforadults.nhs.uk