Timing and respect key to conversations about death
You need to avoid talking about death in offensive manners, says Joakim Öhlén, a professor of nursing specialized in palliative care. Timing and respect are absolutely key, he continues.
Joakim Öhlén is a Professor of Nursing, a long-time researcher of palliative person-centered care, a nurse, and an experienced clinician in the field.
Once in a clothing store, a sales assistant asked what he worked with, and Joakim answered, “I research death”. The sales assistant turned their back, offering no more assistance choosing a pair of pants.
“While I don’t think about death all the time, not at all, I don’t often avoid the subject. Over the years, I’ve learned how to read people in a way, I try to find out whether someone wants to talk about a difficult subject, and sometimes it’s obvious that they’re testing the waters: Are you okay talking about this?”
Relief and quality of life
Palliative care is about relieving distress and promoting quality of life until death, whether it is expected in weeks or years. Proactive symptom relief is considered more important than prolonging life. Some interventions are avoided because they do not benefit wellbeing in the time that remains.
“While I think many people understand this part, the problem is that palliative care is often associated exclusively with suffering. Sure, it’s about dying, but it’s not just about dying,” says Joakim Öhlén.
One patient might be hoping to be around for a family gathering, another wants to be able to work their garden, ideas that can pave the way for conversations about longing, existence, and – if the person wishes – death.
“Palliative care can be relevant for a long time as it’s currently provided as an add-on to disease-specific care and treatment, not instead of them. It’s about easing distressing symptoms as well as providing support to promote what brings joy and meaning to life. If palliative care is associated with death itself, it may evoke an image that feels threatening to the person, in which case it fails to contribute to their wellbeing. This is why the timing of these conversations is important, and the person may need time to make sense of the seriousness of their situation.”
Different relationships with death
Many people in Sweden embrace secular values, others practice a more or less religious life. Joakim Öhlén emphasizes that how we relate to dying and death can differ greatly, which can be of considerable importance at the end of life.
“We’re all different, so it’s not the same for everyone. As a result, interventions need to be tailored to the person’s life situation and what’s important to them. This makes it important to invite the other person into the conversation, to try to gain an understanding of their ideas about life and death.”
“There are probably very few people who can bear to be truly aware of death all the time, but to say that in our culture we’re all in denial about death isn’t true. We follow war reporting that can get under our skin, we read crime novels, and we watch movies where death is extremely tangible. But we also push it away, there’s an ambivalence,” Joakim Öhlén ends.
Joakim Öhlén is a Professor of Nursing at the Institute of Health and Care Sciences, Sahlgrenska Academy, researcher at and former director of the University of Gothenburg Centre for Person-Centred Care, GPCC, and Senior Consultant Nurse at the Palliative Care Center, Sahlgrenska University Hospital.
