Family denial, requests for futile medical interventions and unavailable GPs are just a few of the challenges faced by residential aged care managers looking after people dying with advanced dementia, new research has revealed.
The research, published in the international online journal BMC Geriatrics, reported that these aged care managers found great reward being involved in looking after people in this vulnerable group – but also found it to be a fraught experience.
The article “A good death but there was all this tension around” – perspectives of residential managers on the experience of delivering end of life care for people living with dementia was based on focus groups and semi-structured interviews with 20 managers from various care homes in NSW and Victoria with the not-for-profit HammondCare.
The research by Dr Jessica Borbasi, Prof Josephine Clayton, Prof Allison Tong, Dr Alison Ritchie, and Prof Christopher Poulos is one of the few studies of the challenges of caring for people with advanced dementia at end of life from the perspective of a nursing home manager.
Dementia, which affects at least 50 per cent of the 200,000 people living in Australian residential aged care homes, is eventually a fatal condition.
The research identified six major themes among the participants, the first being a need to establishing what families understand about dementia. Some families were in denial about death and did not want to discuss it.
“One participant said it was ‘a big signal if the family hope the person will get better and improve’ as this will inevitably require ‘ongoing conversations’,” the article noted.
Another theme that managers expressed was the need to be a peacemaker in the face of unrealistic family expectations to wage a war on dying through intensive medical interventions, like cardiopulmonary resuscitation.
These situations were often counterproductive to good end of life care with participants describing a “huge ethical dilemma” as they felt it was not appropriate to “be intervening”.
A participant described a family who asked “what can we do? How can we fix this? And we (the managers) have to constantly say to them it’s not fixable”.
Despite having palliative care needs the same as those dying of cancer, people with advanced dementia often receive little and even painful interventions at end of life and are unlikely to receive specialist palliative care in residential care settings.
The participants said they looked to GPs to assist in sharing end of life care and hoped they would work with families to facilitate acceptance of palliative care. This was not always the case.
They strategized ways to partner with GPs and “get them on the journey with us” but observed “there is almost a palpable fear from GPs” to be involved in palliative care, compounding the challenges of end-of-life treatment.
The researchers said the findings of the research project suggest that continuous front line aged care staff skill development, iterative family discussions, and partnerships building between aged care staff and GPs are all required to promote optimal end-of-life dementia care in residential aged care settings.
The research is released as HammondCare marks Palliative Care Week Sunday 23 May to Saturday 29 May. HammondCare is a recognised leader in providing world-class care and innovation in palliative and supportive care.
To read the article, https://pubmed.ncbi.nlm.nih.gov/33980152/
For more on National Palliative Care week go to the following website: https://www.hammond.com.au/palliativeweek2021