DöBra is a national research program in which questions around death, dying, and grief are investigated in order to make possible more preparedness and awareness around the end-of-life. The program, which is much inspired from the ‘new public health’ approach to palliative care, explores death and dying through cultural, environmental, and conversational approaches, and seeks to understand through diverse means how we can improve healthcare and support at the end of life for the general public.
Carol Tishelman leads the DöBra research program. She grew up in the Bronx, New York, and was educated as a registered nurse at the University of Pennsylvania. She has lived in Sweden for most of her adult life, and has worked at Karolinska Institutet since the mid 1980s.
Olav Lindqvist co-steered the research program in DöBra with Carol. He was a registered nurse and university lecturer at the Department of Nursing at Umeå University, as well as a researcher at Karolinska Institutet. Olav was born and raised in Skellefteå where he had worked as a nurse in a variety of positions, including specialized palliative home care.
This post is dedicated to Olav, who died of sudden illness on March 16, 2018.
This interview took place on the 1st of March, 2018.
Carol: ‘Döbra?’ It’s a pun. In Swedish, it means awesome. So you could say, ‘I went to such a döbra movie.’ So that makes it really good, it’s not just literal, but it’s something that many people say at some point. And a lot of these initiatives combining palliative care and public health have had that sort of name. In Scotland, their program was called: good life, good death, good grief. And that also has that element of humor.
Olav: The project sort of began in 2010, when we went to Melbourne, Australia. When we were visiting a unit working with health promoting palliative care. Before I listened to these people and the work they did, I was still quite focused on the healthcare part of end-of-life care. And for me, that was the turning point, when I became interested in a more public health perspective on death and dying.
Carol: For my part, I didn’t have my roots as strongly in specialized palliative care. I came into the academic world much earlier, and worked with cancer and psychosocial issues at a department working with global health and public health issues. And, through everything that I’ve done, I think that I’ve been struck by what a parenthesis the healthcare system is.
When we started working together in DöBra, it was originally about storytelling, and how to work with life stories. When we were in Canada on a trip, we started working in a very professionalized way with people’s stories, using an intervention called dignity therapy, and helping people leave their legacy to their families through recording and writing. Later, we went to Australia, where the process was different. The initiative wasn’t owned by the healthcare system. And I think that started really a lot of our discussions in terms of who owns people’s experiences, and what kind of knowledge people have and it kind of fed into the political backdrop of the matter.
What we have been working on has been inspired by this thing called ‘New Public Health,’ and the Ottawa Charter for Health Promotion. This means moving from telling communities what to do in order to survive longer, and doing research on people, and in the best of cases for people, to doing research with people as collaborators. The people we have worked with have influenced very much how we talk, and how we develop what we do.
When we adapted our DöBra card deck to Swedish, we had many conversations with the Mångkulturell Center, and they sent us to somebody who was an intercultural strategist for one of the municipalities around Stockholm. And she was really enthusiastic about it. She said that death was a good platform because of the way that it united people. Even childbirth can be divisive, in that in many cultures it is an issue for women only. But death was something everyone had a relationship to, and there’s hardly anything else like that.
And that’s true. Within this line of work, Olav and I come from different backgrounds but have similar values. We rarely argue about values. We argue about everything between here and our values, but not the values.
Olav: One important question we must address in our work is: how much should we talk about death? When I think about it, this goes back to before DöBra started in around 2010, but this question has been with me the whole time I’ve been working in healthcare. I can even see it in my childhood.
For me, starting out working in healthcare, I was so hugely influenced by Kübler-Ross and her ‘stage theory.’ The five stages of grieving. It was in ‘68 or so when she published it. When I started to work in the hospital and in home care later on, the focus was largely about talking about death, and in a way the assumption was to help the dying person to accept that she was dying. And now, I think that’s really wrong. Looking back, that is a theme that has remained quite strong in the way it is talked about. There is this idea that the role of the healthcare system is to pose these questions because real life wouldn’t. Therefore, it was the healthcare professionals who made the rules for how to talk about death and dying. In contrast, this public health approach in palliative care created a new way for people to talk about death on their own terms, not always mediated by health care staff.
Carol: Yes. We put strong emphasis on this public health perspective, where we talk about death, if people want to, and we also work on how we can minimize inequalities. The way the system is now, you sometimes have elderly people in Sweden saying ‘thank God I got cancer,’ because people with cancer usually have better access to specialized palliative care. What is it? Around 90 to 95% of specialized palliative care is directed towards cancer patients. There’s a major difference in the care that you have access to depending on where you live and what you die from and who you are.
Olav: Yet, if you look at what we are dying from as a whole population in Sweden, it’s about 25% who die of cancer, but, at the same time, they get 90% of the specialized palliative care. And this tendency is not based on need, it’s based on tradition.
I was reading an article earlier which said that current evidence suggests that level of access to palliative care today, for instance, is not determined by complexity of needs, but more often by diagnosis, disease, symptoms, age, ethnicity, socioeconomic factors and geography.
Carol: We put too much reliance on the healthcare system in the best of situations. And, we accept inequalities in dying that we would never accept in other forms of healthcare. We would never accept those kinds of inequalities in terms of maternal care, for example. Here in Sweden, we’re building and expanding an exclusive system. There is a risk that a lot of people getting the most expert care are the ones who have the most resources.