NIHR study examines care home residents' views on living and dying

A National Institute of Health Research (NIHR) study which interviewed care home residents over a year to examine how their views and expectations about living and dying and how their views were affected by their experience in the care home has been carried out by researchers at the University of Hertfordshire.

In a paper entitled An uncertain future: The unchanging views of care home residents about living and dying, which has just been published online in Palliative Medicine, researchers at the University of Hertfordshire and co-authors from the University of Cambridge, Lancaster University, Surrey , University College London King's College London, have highlighted the value of ongoing discussions with older care home residents to help staff prioritise and address what is important to the older person.

Contrary to popular belief, older people were no more likely to want to think about advance care plans or advance directives (living wills) just because they were in the last years of their life. Noticing the deaths of other residents did not shape how residents talked about their own mortality and their priorities for end-of-life care. Equally, residents' views about dying did not change over time and were not dissimilar to the views of the wider population.

The study recruited six care homes and the research aimed to be as inclusive as possible and invited all residents to take part in the study.

One hundred and twenty one residents took part in the study and of these, sixty-three residents were interviewed three times over 2008-2009. The study showed the value of discussions with residents that foster opportunities to talk about dying as part of ongoing conversations. It also suggests that providing opportunities for residents and their families to talk about the future as early as possible, particularly for those with a diagnosis of dementia, may be important.

Professor Claire Goodman at the University of Hertfordshire's Centre for Research in Primary and Community Care said:

 "Many people think that by the time they are in a care home there is nothing to live for and that will be the time to think about dying and what they do and do not want.  We found that being in the last years of life, being aware of other residents' deaths and experiencing ill health did not  alters people's views over time or willingness to talk about their thoughts and preferences for end of life care.

"This study found that older people living in care homes are no different to the rest of the population and want to focus on living today. The findings indicate it is the quality of the relationships that residents have with staff and family that will ensure their wishes and preferences are known. They need time to consider and discuss what might or might not happen in the future. These findings can inform how health care professionals and care home staff introduce, acknowledge uncertainties, and tailor existing resources that help us talk about dying and record what we would and would not like to happen when we die."

Source: http://pmj.sagepub.com/content/early/2011/06/22/0269216311412233.full.pdf+html