Palliative care supports patients through the last phase of their lives. Focusing on advance directives, a shift in the care objective and pain relief, this area of medicine is evolving as our society ages.
We’re all going to die. In our societies, we tend to repress it but acknowledging death also helps us to face it more peacefully.” Gian Domenico Borasio, chief of the Palliative and Support Care Service at Lausanne University Hospital (CHUV), is working to improve awareness of end-of-life issues. Situations vary widely and are often related to age and disease, such as dementia, chronic illnesses and cancer. “These patients are at the limits of medicine,” the professor says. “Their organs are too tired, and the disease too far along. The aim of palliative care is not necessarily to prolong life, but to improve quality of life.”
Called a “change in treatment strategy”, this decision means that treatments shift away from healing and prolonging life, but they do not cease altogether. “It doesn’t mean that medicine has failed if a patient dies; it’s the way they die that is important,” says Gian Domenico Borasio, author of the book Mourir designed to raise awareness and director of Switzerland’s first chair in palliative medicine created at the University of Lausanne in 2006. “We have to avoid insisting on administering sometimes invasive treatments to a patient who doesn’t want them or doesn’t see the point. The objective is to relieve physical, psychological, social and existential suffering by providing the best support to enable them to express their full human potential in the final phase of life.”
Almost 70% of the Swiss population want to die at home, but in practice less than 20% actually do: 40% die in hospital and 40% in a specialised home, according to a country-wide report. Ralf Jox, head of the Clinical Ethics Unit and co-director of the Chair of Geriatric Palliative Care at the CHUV, believes that palliative care currently faces two problems: “It’s still overly restricted to terminally ill cancer patients, when it should be considered for many other diseases and, more importantly, at a much earlier stage.” Confirming this, at the CHUV, an average of 75% of palliative care patients have cancer, and 25% have another disease.
“Care should also begin in the last months or even years of life, not just in the last few days, to enhance comfort. It’s a preconceived idea to think of palliative care as a practice of medicine for the last moments of life.” Pain management is vital. An article in the Swiss Medical Forum estimates that, no matter what the disease, a palliative care patient averages more than 10 physical and psychological symptoms at the same time.
In Switzerland, 62% of deaths involve people over 80. The ageing population means that palliative care should be an earlier consideration for patients.
This strategy also makes sense financially. Between 25% and 30% of healthcare costs arise from care provided in the last years of life, mainly due to hospital stays.
However, palliative care is designed to be provided in people’s homes or a specialised elder care facility. Professor Borasio thinks this is a good idea, as long as the burden is not shifted onto loved ones who act as caregivers. “Families cannot provide care alone. End-of-life care can be complicated and demanding. Relocating these tasks to the home, without adequate government and financial support, shifts the responsibility onto relatives and other loved ones, who often find themselves strained beyond their limits.” Elder care facility staff frequently lack training in palliative care. In the canton of Vaud, four mobile palliative care teams travel around to help patients and their families wherever they are living, either at home or in a specialised facility.
“We can’t constantly be thinking about death, but it’s not healthy to completely ignore it either,” says ethicist Ralf Jox. “Thinking about the finiteness of life helps us to realise the importance of living life to the fullest. Making decisions ahead of time also helps to take the burden off loved ones. Moments of illness or bereavement for the family and friends are a good time to talk about these things, subjects that are unfortunately still taboo.”
The Swiss Federal Statistical Office (SFSO) estimates that 70% of elderly people (over age 65) requiring important decisions to be made have lost their capacity of discernment. The Advance care planning project aims to overcome the current limits of advance directives. The goal is to encourage individuals to think in advance about their values and the level of care they want or do not want. They should put their wishes in writing, clearly and free of contradiction. “Advance directives greatly help families to decide how much care should be given,” Ralf Jox says. “In these situations, decisions must be based on the presumed wishes of the patient and not one’s own values. These choices can be difficult without guidance.”
Today, there is no single form but a variety of documents.
The most widely used is the form issued by the Swiss Medical Association (FMH), but its complex terminology makes it difficult to understand. “The directives should be completed with the help of the person’s general practitioner, for example. Regrettably, these administrative procedures are not specifically reimbursed by national health insurance.”
Surveys found that nearly 30% of Swiss people have completed advance directives, and only half as many in French-speaking Switzerland. Meanwhile, only 5% of hospital patients provide their directives. “There is no national register, and many people have not informed their relatives where they have put their advance directives. So the information cannot be found. That’s unfortunate. It should be integrated into the patient’s electronic medical records.”
“Family, friends and loved ones play a key role in supporting a person in palliative care,” says Mathieu Bernard, director of the Chair of Palliative Psychology at the CHUV (created in 2021, the first of its kind in Switzerland). “These are the people who improve quality of life and help to bring meaning to our lives. But they can also be a source of stress for patients, who worry about their future and even feel guilty about being a burden, imposing these difficult situations on them.” Often feeling helpless, loved ones also need support. “They can become emotionally and physically exhausted, and that can be dangerous,” Mathieu Bernard says.
Palliative care patients benefit from social, psychological and spiritual support Acceptance of death can vary with the disease’s rate of progress and the patient’s age. “Older people can accept the end of their lives more easily, but it’s much more difficult for younger people. That reality is not compatible with what their preoccupations should be. Some patients, regardless of age, cannot wrap their head around the possibility of the end of life, and they may go into denial. This is a defence mechanism that helps to suppress anxiety about death. We need to support them from within their subjective reality, which means being sensitive in adapting to their situation. Trying to confront them by insisting on objective medical reality can really be harmful for patients,” the two specialists say. Research has also shown that the notion of altruism can take on greater importance in this phase of life. “Patients are looking to give something back, to pass something on for posterity.” /
As director of the Chair of Palliative Psychology at the CHUV, he explains the importance of loved ones in supporting a person in palliative care.
Philip Larkin, professor and director of palliative care nursing at the CHUV, studies the concept of compassion applied to palliative care. “End-of-life care requires empathy on the part of the caregiver. Compassion is what happens when we put this feeling into action.” He believes that this capacity is reflected in the ability to support patients in making decisions while respecting their autonomy. “This kindness is only possible if the healthcare staff and institutions also practise a form of self-compassion.”
How can you approach the subject of end-of-life wishes with loved ones? The 44 cards in the game Go Wish brings these big questions to the table. Available for order online, it gets the conversation going, allowing the player to express their values, doubts and wishes. “The game offers a playful approach that can encourage people to think about their values and end-of-life preferences,” says Ralf Jox, head of the Clinical Ethics Unit and co-director of the Chair of Geriatric Palliative Care at the CHUV. But it takes more than drawing up advance directives in a clear and applicable manner. The Advance care planning project is a much more comprehensive model that guides the person throughout the process, from initial considerations to the signing of financial documents.
When facing death, spirituality can become a rich resource. “In palliative care, spirituality encompasses issues about the meaning of life and/or a feeling of transcendence, of connection with something that is beyond one’s own human condition,” says Mathieu Bernard, director of the Chair of Palliative Psychology at the CHUV. “It is not reduced to religion alone. The idea is to support each patient in their own spiritual beliefs.” Spiritual guides – what were once called chaplains – are present in hospitals for this reason. Psychologists are also available to help to put reflections about the meaning of one’s existence or illness into perspective.
“But while spirituality can help at the end of life, others experience the onset of illness as if they are being forsaken or betrayed. In all cases, spirituality must be considered and if necessary integrated into care.”
