Thinking about the future
Funded by The Life Changes Trust, Lecturer Jill Will shares how a research project at Laurel’s Lodge care home in Aberdeen has had significant impact on its staff and residents around how they handle conversations about end-of-life care.
People of all ages have concerns about what happens if they become ill and are no longer able to influence the decisions which affect their lives. Care-home staff are often asked as part of Anticipatory Care Planning (ACP) to find out where people want to die, where their preferred place of care is, if they have a “do not resuscitate” order in place, and if their family is aware.
ACP is undoubtedly beneficial, but it can pose challenges for staff who need to have difficult conversations with people they've known for some time and have strong relationships with. The project aimed to support those staff in finding new methods of making those conversations more meaningful. And, we had an amazing group of collaborators to do it, including Professor Catriona Kennedy, Honorary Professor Belinda Dewar, and the team from The Life Changes Trust.
There was an overwhelming feeling from staff that ACP conversations were difficult, intimidating, and something that’s tricky to get right. The team at Laurel’s Lodge were hoping to protect the relationships they’d built with residents and families and didn’t want to do anything that could have a negative impact. But, they also know that ACP was a really important area.
Staff involved in the project took part in some workshops where somebody said they would usually start an ACP-related conversation, with a resident or relative, by saying “this isn’t something either of us really wants to talk about”. We discussed, as a group, how that approach might land with people on the receiving end, and realised—how can we expect them to engage in a conversation that neither of us wants to have?
So, we flipped the language, and tried out something like: “This is a conversation that’s important for us to have, and it’s a conversation we really value. It doesn’t have to happen in one go, but it is something we need to begin to think about.”
From there, the Caring Conversations framework and tools from My Home Life Scotland—part of an international initiative, which RGU has become the Scottish partner for, that promotes quality of life and delivers positive change in care homes—were used to progress the project, with further workshops set up for staff. Questions were then designed to not only find out where the person would want to be but also find out what might bring them comfort.
The focus shifted from "thinking about ACP" to "thinking about the future". It became much more about connection rather than getting information. The positive response from residents and relatives helped staff to move deeper. Relatives who may have been reluctant to have end-of-life discussions were now inviting staff to talk about it. They were able to speak openly and honestly about how they perceived their loved one’s condition.
As for the staff, they said:
“I used to think anticipatory care plans were difficult conversations to have about people who are already at the end of life. But, now I know that anticipatory care plans are an ongoing conversation that helps us to get to know about everyone’s future wishes. When I think about human rights towards the end of someone’s life, it should be a journey, where they are involved in making choices about what they would like.”
“There are wishes waiting to be found. The wishes were always there but we just didn’t know about them.”
A human rights approach was central to this project, particularly in areas around freedom of expression and allowing people to really be themselves. The Scottish Government’s Health and Social Care Standards were also a significant underpinning, with the project linking to discussions around “significant changes in my life”, including death and dying.
There's still much work to do, and we need to continue to look at how ACP can be made part of everyday conversations and how it can build on and inform what people want for their future. We also need to continue to involve relatives because, during this project, I’ve been absolutely blown away by the lengths relatives go to when helping those they care for enjoy the things that matter to them.
