Old people’s final wishes remain unfulfilled by poor planning

The vast majority of older people want to die at home, but very few achieve it. How can extra-care housing help? By Chloë Carter and Dylan Kneale

A questionnaire carried out as part of the national bereavement survey recently found that, of those who expressed a preference, 71% of respondents wanted to die at home but only 21% actually managed to do so. For many older people, these important last wishes remain unfulfilled – and often needlessly so.

Extra-care housing is one model that should help greater numbers of older people die at home, according to their wishes. There is already mounting evidence to support the claim that extra-care housing offers a “home for life”, but qualitative work suggests that there is still a way to go before this is achieved for extra care residents.

Our work in preparing advice on end of life care for housing providers and the NHS revealed that local commissioners and health and social care professionals knew very little about extra-care housing, and its suitability as a setting for providing end of life support.

One of the most difficult aspects of planning end-of-life care is to start a conversation about dying. This lack of planning, however, can mean that an older person’s ultimate wish to die at home remains unfulfilled. Extra care housing can enable residents to live later life to the full, allowing conversations about the end of life and determining a resident’s wishes to become an extension of their broader life goals.

These life goals can vary from the conventional (but no less meaningful) such as joining a book group, to the rather unorthodox: our advice pack features the case of a first-time parachutist in his late 70s, supported by an extra-care housing team.

Design features also make extra-care housing suited to delivering end-of-life care. Wide doorways and adapted bathrooms ensure that these properties can respond to changing needs as residents age. Towards the very end of a person’s life, the properties are large enough to accommodate equipment such as specialist beds and hoists.

Communal facilities mean that essentials such as meal preparation and laundry can be taken care of onsite. Family and friends can use cafés and guest suites, taking care of their own needs while supporting their loved ones. The community that extra-care housing fosters through communal spaces and activities can translate to social capital when a resident approaches the end of life.

The staffing structures within schemes vary, but as well as housing, care and support staff, many employ qualified nurses who work closely with district nurses to facilitate end of life care packages including pain management. A crucial element of extra-care housing is that staff residents with external care providers, including GPs and district nurses, enables residents to die at home. “Relationship-centred care”, rather than person-centred care, is perhaps how we should think of extra-care housing.

Approaching conversations about the end of life can be just as difficult for people working in housing and care as it is for others, even with the emphasis on living life to the full found in extra-car schemes. Cross-sector working between NHS trusts and local authorities can be problematic. Reorganisations in the statutory sector can threaten the relationships already developed, which can be critical in supporting a resident and meeting their needs.

Nevertheless, extra-care housing brings end-of-life care services and means that an increasing proportion of those residents who wish to die at home will be able to do so.

Recognising the potential of extra-care housing is particularly important as increased funding for housing with care was allocated in the health white paper earlier this year. It is imperative that all involved in the planning and delivery of end of life care become fully aware of the capacity of extra-care housing to deliver better end-of-life care.

Chloë Carter and Dylan Kneale are co-authors of the End of Life Care in Extra Care Housing learning resource pack, available through the NHS End of Life Care Programme : http://www.endoflifecare.nhs.uk/