Death in the form of a skeleton with a scythe is a familiar figure of dread, but death and dying do not have to be frightening.
“Death does not have to be marked by fear; it can just as often be characterised by calm and quiet. There can be a lot of joy even during the last days of a person’s life!”
These are the words of Professor Carl Johan Fürst, head of the new Palliative Care Institute (Palliativt utvecklingscentrum), established by Lund University and Region Skåne.
As an oncologist and specialist in palliative care, i.e. care at the end of life, he has had a lot of contact with death. He is therefore pleased that death has become a little less taboo in Sweden than it was a few decades ago. Then, death was banished to hospitals, whereas today people increasingly stay in their homes for as long as possible, supported by specialised home nursing. Seriously ill patients have their own blogs, and websites and documents are written about death. An ageing population is also likely to lead to increased interest in a good end to life.
At present, the end of life is not always good, or at least not the best possible. Those patients who receive palliative care, either at a hospice or through specialised home nursing, do get good help, both with pain, breathing difficulties and other physical problems, and with the thoughts they experience as they near death. However, not everyone receives this level of care.
“Today it is mostly patients with cancer who receive care at a hospice or through advanced home nursing. However, many patients in nursing homes and in hospital would benefit from the palliative care approach and expertise. No one should have to have cancer to get the best end-of-life care!” says Carl Johan Fürst.
Drawing attention to these patients will be one of the future tasks of the Palliative Care Institute. Another is to help make sure all staff who care for patients at the end of life have the requisite skills. There are many shortcomings in this area, as shown in an LU thesis in health sciences last year.
Researcher Ingela Beck studied health care assistants’ and carers’ experience of palliative care for elderly people in nursing and residential homes. The study showed that palliative care was often commenced very late, and that the staff felt lost and uncertain about it. Despite how commonly elderly people die in nursing homes, the care staff did not feel equipped to talk about death, and often had difficulty dealing with their own feelings about dying.
The Palliative Care Institute therefore wants to work to reach all those who care for seriously ill patients, and all those who are training for these professions.
“We need to introduce more components on palliative care in medical and nursing degrees, as well as starting more research projects. Then, in the long term, perhaps there will be a few more researchers in the field. There are only a handful of us in Sweden at the moment; so few that we all know one another. That’s strange really, bearing in mind that so much of health care is about caring for seriously ill people”, says Carl Johan Fürst.
However, Lund is at the forefront. The Palliative Care Institute is the only R&D centre in the field in Sweden and has not one but two professors: as well as Carl Johan Fürst, Birgit Rasmussen, Professor of Nursing specialising in palliative care, is affiliated to the centre.
Carrying out research and training around dying patients does not have to be such an ethical dilemma as it may appear.
“When patients are sufficiently lucid to decide whether they want to take part in a research study, the vast majority say yes. They often find it meaningful to participate in this way to help improve the care other, future patients receive”, says Carl Johan Fürst.
In training, role play with professional actors can be used. This gives doctors and medical students the opportunity to practise difficult conversations and improve their ability to raise difficult questions and hold necessary conversations with patients and relatives.
In the right circumstances, students can also meet actual patients. There is even an American doctor who takes large student groups in to dying patients. With a lot of respect, sensitivity and caution, this has led to moving encounters that are unforgettable for the students and relatives who are present.
The Palliative Care Institute is arranging its first international conference in November, on the best care for dying patients. One of the presentations will be about how one can know – or accept – when the end is near.
“Health care staff often realise when the end is near. However, it can be difficult to turn that insight into altered care with fewer interventions and more conversation. Tests, ambulance transfers and drips are often continued to the last, although patients and their relatives would probably find it more helpful to prepare calmly for death”, says Carl Johan Fürst.
Text: Ingela Björck
Photo: Gunnar Menander
More information about the Palliative Care Institute can be found at www.palliativtutvecklingscentrum.se.
Facts about PALLIATIVE CARE
Palliative care focuses on managing pain, nausea and other symptoms and meeting the psychological and existential needs of patients and relatives. The focus of the care is on supporting the patient’s quality of life at the end of life. In Sweden, specialised palliative care is provided in hospices and in the form of advanced home nursing services.
The origin of modern palliative care is usually traced back to 1967, when St Christopher’s Hospice opened in London to care especially for dying patients. In Sweden, palliative care began to be developed during the 1980s, in particular in Östergötland and Stockholm. Nowadays, palliative care is available in all regions, although to different extents.
Carl Johan Fürst was recently awarded the 2014 Håkan Mogren Medical Prize for “his ongoing contribution to human health and wellbeing”. The prize was awarded by Karolinska Institutet and comprises a certificate and personal prize money of SEK 250 000. Before coming to Lund, Carl Johan Fürst worked at Radiumhemmet, Stockholms Sjukhem and the Department of Oncology and Pathology, KI.