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:
The effectiveness of interventions to improve palliative care for older people.
A systematic review is underway to assess the effectiveness of palliative care interventions for older people in care homes. The protocol is under review by the Cochrane Collaboration (Hall et al.). We are developing a new guide for the World Health Organisation on better practice in palliative care for older people (funded by the Maruzza Lefebvre D’Ovidio Foundation). We are working with the World Health organization, European Association for Palliative Care, European Union Geriatric Medicine and other international collaborators to collect examples of better practice. An extensive literature search and an international call for examples have been conducted.
Supporting dignity at the end of life
The aim of this work is to assess the effectiveness of a novel dignity therapy intervention. In depth interviews have been conducted with 18 older people in care homes on their views on dignity and how to maintain it. Most participants said that they enjoyed taking part in the study; however, conducting research in this setting raised a number of challenges, including obtaining informed consent and finding a convenient time and place to them (Longhurst, Hall & Higginson). Preliminary analysis shows that residents suffer many losses, including family, friends, home, finances and independence which threaten their sense of dignity. Despite their frailty, their concerns focus more on maintaining a useful role, some independence and on care tenor than end of life issues (Hall, Longhurst & Higginson). We plan to pilot a modified version of dignity psychotherapy to support dignity in residents of care homes. Additional funding is been sought to develop this strand of the work. We are drawing on the expertise of a large advisory group for these studies.
“I am much more awake when I have visitors and we can chat. My pain's not so bad and I can sleep at night”.
Exploring the barriers and facilitators of the Gold Standards Framework for Care Homes
The Gold Standards Framework for Care Homes (GSFCH) is recognised nationally through the Department of Health’s End of Life Care Programme. In collaboration with care homes, we are exploring views on experience of the GSFCH in local care homes (funded by the Guy’s & St Thomas’ Charity). As part of this work, we are also exploring views and experiences of providing end of life care more generally and maintaining dignity and on understanding of the new Mental Capacity Act and its implications for care homes. The response rate to invitations to take part has been excellent. So far we have conducted 46 interviews with care home managers, nursing staff, district nurses and care assistants, with many more booked. Analyses of the first interviews are in progress. We are about to start interviews with residents and their families to obtain a users perspective. In addition to local care homes, we are collaborating with a wide range of other local stakeholders to conduct this project, including: age concern, the care home support team, academics and clinicians in primary and secondary care.
Symptom burden and quality of life for older people in care homes
There is little good quality research on the symptom burden and quality of life for older people in care homes. In collaboration with care homes and clinicians, we are planning a study to investigate their symptom burden (physical, psychological and spiritual) and current levels of palliative care and how this impacts on their quality of life. We plan to use a range of validated measures to explore their acceptability to participants. The protocol for this study has been submitted for ethical approval.
“My mother couldn't get out of bed. It was a daunting thought to have her in my own home. My biggest concern was that we would get the support so we could care for her at home. She had to go back in, in the middle of the night.”
References
Hall S, Kolliakou A, Davies E, Froggatt K, Higginson IJ. Interventions for improving palliative care in care homes for older people. Protocol under review by the Cochrane Collaboration.
Hall S, Longhurst SL, Higginson IJ. Dying with dignity: A qualitative study of the views of people in nursing homes (in preparation)
Longhurst SL, Hall S, Higginson IJ. Challenges to conducting qualitative research with older people living in nursing homes (in preparation)
Sue Hall interviewing participant in study
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