Facts: About the doctoral project
The project is about introducing early, preparatory conversations before the end of life in special housing for the elderly.
The doctoral project examines:
what drives change when new working methods are introduced in special housing for the elderly, residents’ and relatives’ experiences of early preparatory talks.
if the introduction of preparatory talks can lead to more person-centred care and care.
Three special housing units in the city of Stockholm are participating in the project, which are working to introduce early preparatory talks as a routine for everyone who moves in.
— Death is the only equality reform that has passed, it is fair.
Börje Olsson gets a good laugh from her neighbors at Fruängen’s nursing home in Hägersten in southern Stockholm. Around a thermos of coffee and a box of chocolates, five elderly people and two from the staff have gathered for a moment of literal death talk.
Reidun Saitora, who is the coordinator at the accommodation, describes that it is not so easy to raise the issue of death and the last period of life.
— I probably thought that someone would take offense, that there would be resistance. But so far no one has been negative, she says.
On one of the conversation cards, the question of how the body changes with aging is raised. “Yes, I would like to know that, I think it’s going on in a chorus,” says Ebba Svartling, one of the residents at Fruängsgården’s nursing home in Stockholm. Here in conversation with Börje Olsson and coordinator Reidun Saitoria. Card play leads to conversation
The nursing home is one of three in an ongoing research project with the aim of making the last time in life as good as possible. As part of the project, the staff has received training and tools to facilitate conversations about the last time in life.
To help them, they have a “card deck” with statements. It says, for example, “To be free from pain”, “To keep my sense of humor”, “To be looked after by staff I enjoy”, or “To feel human touch”. One way to use the cards is for the elderly to prioritize the statements they think are important and to reflect on them together with the staff.
“The power of the conversation cards is that they open up conversations about everything possible. We get to know the residents better and find out what they think is important,” says Reidun Saitoria, coordinator at Axgården’s care and care home. The deck is a research-based conversational tool.
Within the framework of the project, parts of the staff have gone through conversation leader training, and had conversations with residents and relatives. Starting from the cards has been shown to lead to talk about life, events, people and feelings.
— The cards are very good. Many contain questions that I have had within me but that I have not really formulated, says Ebba Svartling, one of the residents.
Agneta Blixt, Börje Olsson and Ebba Svartling don’t mind talking about life and death, but it can be difficult to know how to bring up the subject. Death exists but is not mentioned
No matter how you look at it, the nursing home is a place where many people spend their last days in life. In 2021, almost 40 percent of all deaths in Sweden occurred in a nursing home. It is known that a high percentage of those who move to a nursing home die within a few months. Even so, the discussion of death is often absent.
“When you avoid talking about death, you also miss talking about what’s important in life,” says Åsa Olsson, specialist nurse in elderly care in the city of Stockholm and doctoral student at the Karolinska Institute.
There are several studies that show that older people often want to talk about their thoughts about the end of life, but that they do not feel that they have the opportunity. One of the reasons is that people around often find it a difficult subject to bring up.
In her research, Åsa Olsson examines how staff at nursing homes can be supported to raise questions about the end of life by having early and structured conversations with residents and relatives.
She is convinced that the last time can be much better for both the elderly person and the relatives if you talk more openly about it. This increases the possibilities to design care based on the resident’s wishes so that it becomes more person-centred.
Åsa Olsson, PhD student at Karolinska Institutet. Humor ranks high
In the coffee room at Fruängsgården, the discussion continues around the cards. The conversation drifts into places of upbringing, via yoga, the computerization of cow milking, whether it is important to be clean and tidy and back to humor. All five think that being able to joke with each other and with the staff is one of the most important things.
“It gets sad to talk about death all the time, we know how it ends,” says Göran Olsson.
Humor and “nonsense” are important, both Anders Homenius and Göran Strindlund think.
When asked if they have talked to their relatives about the end of life, most answer no. Ebba Svartling says that she has talked a little with a relative about it.
— I would like to talk more, but they are so young, so it doesn’t feel quite right to bring it up. But if they ask, I’ll be happy to answer. I like to talk about things that are difficult, she says.
Many actors in elderly care market themselves by talking about the activities they can offer the residents, everything from spas to wine tastings and excursions. It may be important but is not for everyone. Maybe you turn more to the relatives than to the older people?
— It has taken a while for us in elderly care to realize that we actually deal with palliative care to a large extent. It’s about a holistic view of people and working for quality of life throughout life, says Åsa Olsson.
Agneta Blixt, Börje Olsson and Ebba Svartling. Not for everyone
Do we then have to talk about death? Maybe not everyone wants to? Anyone who doesn’t want to talk about death at all should obviously not have to, says Helene Åvik, researcher at Lund University.
— But my experience is that the elderly often make attempts to have these conversations but are not always heard. They may say things like “it’s my turn soon” or “I don’t have much time left now”. Relatives and staff often wave it away. They give answers like “Oh, now we’re talking about more fun things”.
In her own research, Helene Åvik has investigated, among other things, how staff at special housing units pay attention to early signs of death. Among other things, it involves going through one’s life from childhood, becoming less interested in participating in social contexts and reduced appetite. Things that can happen weeks or months before death.
— At first the participants were questioning, but when we started talking in the groups, the staff recognized all the signs. But it’s not something you talk about very much, says Helene Åvik.
— One way is to raise the issue already when you move into special accommodation. Then you show the elderly and relatives that it is okay to talk about it. It’s not about having to talk about death specifically, it can, for example, be conversations about the life that was and highlight concepts such as palliative care, she says.