The work of Dr Katrin Gerber has caught our eye. This is because whenever the question comes up about where someone wants to die, it can be hard to gauge accurately, and Katrin has studied it intensely.
As a kindly volunteer, sitting with palliative care patients, I remember being struck by the differences between two female cancer patients, who arrived at hospital at completely separate times.
Both were still lucid when settling into the ward for the first time. One leaned in and told me she did not want to die in hospital, she needed to get out in time. “How do I make sure of this?” she asked.
The other, leaned in in a similar way: “I want to die in hospital. I do not want my children feeling responsible for me at the end.”
Their circumstances were so similar, yet the contrast in their attitudes couldn’t have been greater. It wasn’t that they saw me as having any influence over the decision, it’s just that they were telling everybody they could, such was their fear that they wouldn’t be listened to.
“The question of where to spend one’s last days is much more complex than most theories can grasp,” Dr Gerber points out in her article ‘Preferences for place of care and place of death: What, how, when and who to ask?‘ published in the journal Progress in Palliative Care, May 2019.
This paper has a similar theme to other papers she has published on the subject, with her co-authors Barbara Hayes and Christina Bryant.
In ‘It all depends!’: A qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers’, published in Palliative Medicine 33(7):802–811, May 2019, they point out that: “The process of forming location preferences was shaped by uncertainty relating to the illness, the caregiver and the services.”
In their findings, they suggest: “that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.”
In Katrin’s PhD thesis – A place to die: preferences for place of care in terminally-ill patients and their family caregivers, she said she found three things.
“Firstly, family carers tended to have lower preferences for care and death at home than patients did and their ability to accurately assess their patient’s wishes varied depending on the assessment task. This affirms that patients and carers must be acknowledged as two separate entities with sometimes different preferences and views.”
“Secondly, some respondents’ preferences for place of care were different from their preferences for place of death. The distinction most often observed was that participants wanted to be cared for at home, but they did not necessarily want to die there. This finding draws attention to the importance of clear communication at the end of life.”
“Finally, preferences of terminally ill patients and their carers were influenced by a complex interplay of illness-related, personal, interpersonal and structural factors.”
This third is very ‘how long is a piece of string’ for everyday people, grappling with these questions for those they love. But for those who have to filter so many different responses, it’s great to see people looking for new ways to answer a question that can seem subtle, yet is not.
Katrin’s papers aren’t easy for laypeople to access but if you go to: https://www.researchgate.net/profile/Katrin_Gerber you can find out more about her work. Then ask one of the palliative care team you are working with to access the paper you want, for you. They usually can, through their hospital academic websites.
Dr Gerber’s PhD thesis is an open access document. It can be found at: https://minerva-access.unimelb.edu.au/handle/11343/214750
For more on this topic, go to: https://good-grief.com.au/a-good-death-book-margaret-rice/