Dying with dignity in a Swiss care home
In the palliative care centre in Bern’s Inselspital, patients with terminal illnesses are being looked after. Around a third of them die there. We visit the hospice, and a memorial service, where employees and relatives grieve together.
It’s a cool evening, but the atmosphere inside the chapel is warm and still. A memorial service is being held for those who have recently died and who spent the last stages of their lives in the Inselspital’s palliative centre, the Swan House. The priest, Simone Bühler, encourages the congregation to light candles as a symbol of their grief and devotion. A harpist and guitarist play calming music, the flames of the candles flicker in rhythm.
“Four times per year, during each season, we remember the lives and deaths of those who we accompanied for a time,” Bühler explains. “As death is a daily companion for the nursing staff of the Swan House, this ritual is important to them. We also invite the relatives to share the moment with us.”
Palliative care
The Swan House team is interdisciplinary. In addition to medical doctors, there are nurses, physiotherapists, pastoral workers, social counsellors and music therapists. “Palliative medicine is not about fighting an illness; it’s about alleviating suffering,” senior physician Annette Wochner tells swissinfo.ch.
And it’s not only about tending to medical problems. It’s also about providing patients with a quality of life and a sense of dignity. Once a week, for example, patients receive spiritual support from a pastoral worker while a social counsellor answers practical questions about inheritance or succession plans. Relatives are also granted support and, if needed, they can find accommodation at the Swan House.
Mainly cancer cases
Sixty to seventy percent of patients in the Swan House have cancer. Others suffer from incurable nerve, lung or kidney diseases. Most of them have been referred to the Swan House from the Inselspital’s other units.
It’s important to alleviate the pain: “patients in physical pain often express it rather directly. Due to their discomfort, they can become aggressive, and the slightest noise can be unbearable for them,” Wochner explains. In such cases, the staff joins forces to look for a solution. Psychological issues and fear-based behaviour are evident, and often the patient turns on someone they feel close to, like a friend or family member.
Jokes help build up trust
Mustafa Celik from Turkey works as a nurse at the Swan House. Whilst trimming a patient’s nails or giving them a shave, he builds trust by telling them jokes. “When I look after patients from other cultures, I adapt to them individually,” he says.
But language is a big hurdle in the job. Celik sometimes has to rely on relatives to help translate tongues uncommon to those spoken in Switzerland, such as Chinese, Japanese or Arabic.
“It can be a burden for the relatives to translate medical terminology,” Wochner points out. This is why the Swan House works with translation agencies, a service paid for by the hospital.
A right to an informed death
Linguistic challenges aren’t the only barriers to communication. there are also cultural hurdles that can sometimes lead to conflict. One Chinese patient, for example, did not know that he had a terminal illness because his relatives decided to keep him in the dark to spare him the suffering.
“In Switzerland, dying and death are spoken about. We think that everyone has the right to die informed,” Wochner says. “Refusing to give a medical diagnosis is tantamount to fraud; it could raise false hopes”. Patients have the right to know how they are doing as it enables them to plan for the rest of the time they have left and perhaps make some dreams come true.
In other cultures, such as Islam, it’s taboo to talk about death with the elderly, something that Wochner has come to realise. “In palliative care, we have to take cultural factors into account and adapt,” she says. “Using the right words sometimes helps patients to better accept that they are dying.”
Then, some patients decide they want to take the euthanasia route.
“We respect their decision, but the law does not allow euthanasia to be carried out at the Swan House,” Wochner says. Rather, the staff puts the patient in touch with the euthanasia team, so they can arrange an appointment to discuss it and proceed with their wishes at home. “We take good care of the patients until they leave the Swan House,” she says.
Health insurers cover the cost of palliative care up to a certain amount. “If the illness is complex and the patient needs to stay longer, the hospital pays for the extra costs,” Wochner says. Most patients stay at the Swan House for about two weeks, although in more complicated cases, some patients might stay up to two or three months.
Three weddings per year
Naturally, working at the Swan House is not easy. With death comes grief. And how can you separate your private life from your work life? Wochner handles it pretty well: “it really helps to talk regularly with colleagues about it,” she says.
Celik says that the sad feelings are not easily forgotten. “There will always be some grief. However, knowing that I helped the dying person to the end of their life and to have gotten recognition for that motivates me to support others.”
The staff of the Swan House accompanies many people during their last days and sees many different facets of life. For example, what does a wedding – for many the most beautiful day in life – mean to the dying?
“Last year alone we celebrated three weddings at the Swan House,” Wochner says with a smile. “Such joy in a place of grief is a wonderful reward for our work.”
Swan House Centre for Palliative Care
The University Centre for Palliative CareExternal link at the Inselspital Bern (PZI) was founded at the end of 2012 to give palliative care comprehensive and academic importance at the university hospital.
One of the main purposes of the centre, which is a place for learning and research, is to increase the specialists’ competencies in the area of palliative care.
Raising public awareness of decisions in the last stage of someone’s life is also an integral part of the work at the Swan House, whose staff is active in political and professional committees.
Translated from German by Billi Bierling, swissinfo.ch
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