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.