Dying well at home: the case for integrated working
Choosing to die at home
Making sure people have a choice about where they die
You could feel it in her and it was the remarkable increase, again, in her spirits and that’s all I can say. So, no, I had no hesitancy in ... saying: “Yeah, you can come home.” And, as it turned out, it was a wonderful development.’
Carer [1]
Recommendations
Professionals and providers should:
- Identify people who may be in their last year of life to ensure that they can access palliative care services when they need it.
- Liaise with all those involved in the care of the person.
- Support people at the end of life to choose their place of care and/or death.
- Provide information and support to carers.
Commissioners should:
- Encourage providers to have a protocol for identifying and meeting the need for end of life care at home.
- Ensure, wherever possible, that people are enabled to die at home if they wish. Characteristics such as age or condition should not automatically exclude people.
- Ensure that providers have protocols in place for liaison between disease specialists (often in hospital settings) and primary/community staff.
- Ensure that support and services for carers are a priority.
Key points from research and policy
Who dies at home
- Between 50 and 74 per cent of people express a preference to die at home. This proportion may decline as death approaches and people feel they want more support and full-time care [2, 3].
- Fifty-nine per cent of all deaths are in hospitals while 17 per cent are in care homes and 18 per cent are in the person’s own home [3, 4].
- The single most important factor that enables people to die at home is the presence of a carer [4].
Factors that influence who dies at home
- Factors that increase the likelihood of dying at home are:
- cancer diagnosis
- absence of complex conditions
- symptoms that can be managed in the home setting
- higher socio-economic status
- ethnic background (people from minority ethnic groups are less likely to die at home)
- not being in older age groups
- being married or not living alone
- gender (more men than women die at home)
- availability of local services.
- Services can respond to people’s wishes to die at home by:
- providing rapid access to palliative care and support at all times of the day and night
- recognising people as being in the last year of life, or the end stage of their disease or condition, and referring them as early as possible to palliative care services [5, 6, 7]
- providing support to avoid emergency hospital admissions
- ensuring timely hospital discharge and provision of community services without delay.
Specific health conditions
- Palliative care services exclude many conditions such as chronic obstructive pulmonary disease [8], Parkinson’s disease [9, 10], stroke [11] and dementia [12, 13].
- People and their carers should have access to specialist clinicians who can advise on their symptoms that are specific to their conditions.
Practice example
- Practice example 4 outlines a scheme to provide bungalows, a homely environment with health services nearby, to people who cannot be cared for in their own home, because either they have no full-time carer at home or their home environment is unsuitable or overcrowded. Having end of life bungalows close together helps service providers.
Downloads
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Available downloads:
- Dying well at home: the case for integrated working
- Dying well at home: research evidence