Dr Michal Boyd presents her report from the Te Arai Conference – based on her presentation on the results from ELDER – End of Life with Dementia Research.
(Check out the entire PowerPoint presentation here: Boyd 3-11-17 Te Arai Conf)
The End of Life with Dementia Research (ELDER) project explored the quality of end life for older people living residential aged care facilities across New Zealand. Our study took place in 61 facilities from Northland to Dunedin. Each facility reported deaths over a three-month period and we followed up with staff to determine the quality of death using standardised questionnaires and qualitative interviews. We also interviewed a sample of families/whanau as well.
There were 286 deaths in total as well as 161 interviews of aged care staff and families. This research replicated a similar 2014 Belgium study. 1
What we found:
- Dementia accounted for 55% of deaths,
- 28% were due to chronic illness and
- 17% were from cancer.
- Those with cancer were significantly younger than those with either dementia or chronic disease and had much shorter lengths of stay.
- There was more hospice involvement for those with cancer (30%) than chronic disease (11%) and dementia (5%).
- No difference in the quality of death in the last week of life regardless of diagnosis.
“People with dementia had significantly more physical symptoms and sentinel events such as pneumonia, hip fractures and swallowing issues in the last month of life.”
These results highlight that end of life care in long-term care facilities requires a high level of symptom management skill in the last weeks and days of life regardless of the primary diagnosis.
It also shows that those with advanced frailty due to chronic disease and/or dementia require a different palliative care model based on comprehensive gerontology care over an extended period of time than those with cancer.
Fascinating results from the staff interviews:
- Deborah Balmer looked at residential aged care staff rituals around death and dying. She found a strong desire by the residential aged care facility to accompany the imminently dying to death, and how hard they worked to achieve this. It was seen as an important component of how they understood a good death. However, with that came tension, extra demands on staff resourcing and emotional load.
- Susan Foster’s work looked at the health care assistant experience and found that they understand the philosophy of person-centred care, but find it difficult to integrate this philosophy into their care due to the demands to perform the care ‘tasks’ required of them.
- Rosemary Frey looked at the impact of staff religiosity/spirituality on burn out. Staff appeared to have distinctly different experiences of the role of religious beliefs in attitudes toward death and dying – as reflected linguistically in how they describe it. Religious belief strength does have an impact on how well staff members cope with death and dying and that membership in one of the three religious belief strength groups does make a difference in the coping strategies employed by staff.
Many more results are yet to come from the interviews and the quantitative data. Next up for Rosemary is a paper describing differences in facility characteristics, such as for profit status, on quality of end of life symptoms. Other papers by the team will explore the experience of the family of those that died as well as aged care staff view of hospice care for residents.
Look forward for more to come from the ELDER team next year.
- Vandervoort A, Van den Block L, van der Steen JT, et al. Nursing home residents dying with dementia in flanders, belgium: A nationwide postmortem study on clinical characteristics and quality of dying. J Am Med Dir Assoc. 2013;14(7):485-492.
- Lynn J, Adamson D. Living well at the end of life. adapting health care to serious chronic illness in old age. Washington: Rand Health; 2003.