Palliative Care for the Elderly
Older people are often overlooked in the design of care provision, and yet they often have the greatest and most complex needs. This research programme, funded by the Dunhill Medical Trust, seeks to understand and determine the needs of older people with progressive illnesses, and to develop and evaluate an educational and supportive intervention to improve palliative care for this rapidly growing population.
This work is currently focusing on four main areas:
- Fostering dignity for older people at the end of life
A study exploring the views on maintaining dignity of older people in care homes has broadly supported a model of dignity at the end of life developed for people with advanced cancer and highlighted a number of challenges to conducting research in care homes for older people. This work has led to two Phase II Randomized Controlled Trials of a brief therapy to reduce distress at the end of life. The first study (funded by the Dunhill Medical Trust) focuses on older people in care homes, the second (Funded by Dimbleby Cancer Care) focuses on people with advanced cancer. They are due to be completed by the end of 2009.
"When you lose your pride I think, well they say you've lost your dignity, and that's how I think it is. It is pride. A feeling, an emotion"
"All living things have dignity, even that tree for instance has dignity, it's a living example of life and as such has dignity.....With me I am just on my own in this room, but the living things out there were put in place by God, that is where I draw my dignity from now. I look out of that window every day and I believe that God has put those trees there to look after me, to watch over me. They are always there, never changing, they care for me."
"People respond to the way you treat them....dignity is a two-way thing."
- The effectiveness of interventions to improve palliative care for older people
A systematic review of interventions to improve palliative care for older people in care homes is nearing completion. We found five studies, all conducted in the U.S. and concluded that there is a need to develop and evaluate more ways to improve palliative care for older people in this setting. We have also completed the first draft of a new booklet for the World Health Organisation on better practice in palliative care for older people (funded by the Maruzza Lefebvre D'Ovidio Foundation). Responses from a wide range of international experts in palliative care and geriatrics have been very positive. We plan to submit the guide to the World Health Organisation in November 2009. This project has been awarded European Association for Palliative Care Task Force status.
"I was yanked out of bed at eight o'clock this morning, in the shower room, I wasn't even awake. (laughs) Well I mean they do their best for you but they haven't always got time to do what you want."
- Barriers and facilitators of the Gold Standards Framework for Care Homes
We have completed a study exploring views on the Gold Standards Framework for Care Homes in local care homes (funded by the Guy's & St Thomas' Charity). Interviews have been conducted with care home manager, care assistants, nurses, residents and their families. We found that although most care homes are positive about the Gold Standards Framework for Care Homes, there are a number of barriers which need to be overcome for the framework to successfully implemented in some homes. Further analyses of these rich interviews are planned.
"If you're running a competitive business...you've got to develop something that's special...it has helped the home acquire more clients...in the past there were difficult times, so it needed that to actually boost it - the reputation a bit, you know, and restore the confidence of people."
- Symptom burden and quality of life for older people in care homes
Although it is assumed that the symptom burden on older people in care homes is high, there is relatively little good quality research on their symptoms, in particular psychological and spiritual problems, and their quality of life. The suitability of many standardised measures for older people in care homes is not known. We have completed a study to pilot measures of quality of life and symptom burden of life with 21 older people in care homes. Cognitive interviewing strategies were used to assess measures of physical, psychological and spiritual symptoms, palliative care outcomes and quality of life. Our preliminary analysis of this data show that older people in care homes have major problems completing the SEIQoL quality of life interview.
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