Six years ago I took care of my dying grandmother. She died in hospital, where I spent the last three nights of her life with her. On the first night, she was still awake and we talked about all the small and big things, remembering my childhood, the time we spent together and reassuring each other that we had always been thinking of each other all those years. On the second night, her condition worsened and she realised she was dying. We knew we had to say goodbye to each other. She asked me not to leave her alone, and of course I stayed with her, holding her hand, brushing her hair out of her face and gently dabbing water on her lips. This was the support I could provide for her. At some point she fell asleep and wasn't going to regain consciousness. I stayed with her the entire next night. I sat at her bedside and tried to read every little movement of her face. Was she in pain? Did she need to be repositioned? From time to time, the night shift nurse came to check on things. While I understood that she was doing her best, I also saw that my grandmother was restless all the time and how she contorted her face. She eventually died early in the morning. It wasn't a gentle death, not a peaceful one. I knew she would have preferred to die at home, and I wish I could have made that possible for her and made her last moments easier.
At the time, I had no idea that I was going to be involved with death in my professional life. For me, the death of my grandmother was a personal, private experience. However, with the COVID-19 pandemic, dying and end-of-life care became once again a more public topic. Suddenly, death had returned to the centre of everyday life in Europe. No longer could death be pushed aside to hidden spaces and denied a place in society. People lost their loved ones without being able to say goodbye. People died in hospitals. They died in isolation wards, in retirement homes, and they had no one sitting at their bedside to hold their hand and take away their fear. Politicians talked about dying, science provided figures, caregivers had their say in the media. Death became more ubiquitous than many had ever experienced before. Of course, palliative care, outpatient hospice services, inpatient hospices, and the debate about active and passive assisted dying or assisted suicide have been around for much longer than the pandemic. Still, it made dying visible and tangible again. Most people realised at some point in the course of the last two years that it can happen to anyone at any time.
For this reason, we decided to give the end of life a larger editorial space and to let physicians from Switzerland, France, Italy and Germany express their views from very different perspectives about their work with people at the end of life. What they all have in common is a personal angle, be it a situation or decision that pushed them to their limits, a work-related conflict with relatives, or the death of someone close to them.
The question of end-of-life care is as natural and unavoidable as it is complex. In a reality that is highly technical, framed by law and portrayed by the media, there are no simple points of view and only in the rarest of cases is dying a straightforward matter. We are challenged with an ageing society that offers fewer and fewer opportunities of private retreat and home care. But also young people suffer from life-threatening diseases, which doesn't make it easier to deal with imminent death. Almost always, physicians are involved when the end of life is approaching. Then, communication, compassion, and the full use of all reasonable measures are needed to keep life as liveable as possible and to provide the best care and support for the dying.
But there is also the question of situations when the most appropriate measure is to halt care and life support – and how to distribute responsibility among patients, nursing staff and physicians. Around the world, there are different regulatory frameworks and legal conditions, especially with regard to an autonomous and self-determined death. The ethical standpoints are also manifold, and even those who reject euthanasia in any form do want to help the dying. Our interviewees address these issues. They assess what could be a way forward, reflect on where action is needed, and what legal, professional and emotional challenges physicians face in Switzerland, France, Italy and Germany.
This series of contributions is primarily intended to encourage people to engage with the issue of dying. The aim is to ensure that communication between physicians and patients, and the shared experience of coping with this phase of life can be better dealt with. All the interviews we conducted stressed the importance of addressing this issue. After all, it is always difficult to enter a room where a person is dying or to talk to their relatives. There is still too little coverage of this in medical training, and young physicians will be confronted with situations for which they have not been adequately trained. This has to change. Because being well informed and trained also means being able to provide good care.