The importance of advance directives for adults with capacity to act in Switzerland
In the last blog post(link), we talked about living wills in general: the legal basis, the content and scope, but also which problems and critical aspects need to be considered.
Today we are going to look at the reasons why it is so important to draw up a living will. On the one hand, there are personal motivations, which can be quite individual for each adult person with the capacity to act. However, there are also important, objective reasons why you should deal with your living will as soon as possible. For reasons of relevance and legal considerations, the following comments are limited to Switzerland. According to the Federal Office of Public Health (FOPH), only around 16 percent of the Swiss population had a living will in 2017. The proportion is somewhat higher with increasing age.1 However, even a proportion of 35% is an indication that one of the most important instruments for safeguarding patient autonomy is still not being used sufficiently.
Expression of self-determination and autonomy
From the perspective of the individual, the rights to life and personal freedom as well as to privacy guaranteed in the fundamental rights catalogs of the Federal Constitution and the European Convention on Human Rights are the basis for the right to self-determination and autonomy. A living will enables a person to make their own medical decisions, even if they are no longer able to make them themselves at a later date. It thus guarantees the self-determination and autonomy of the individual, even in difficult medical situations.
A means of clearly communicating treatment wishes
A living will allows an adult to record their specific ideas and wishes regarding medical treatment. This can be, for example, the rejection of certain medical measures as in the following example: Gerald and Elaine Grünberg married in 1976 when they were both still dental students. They both practiced, he in Lausanne and she in Morges on Lake Geneva, and together they raised two sons. Then in 2010, Elaine noticed that her husband, the former math superstar, was suddenly having trouble calculating tips at restaurants. “He just didn’t seem so ‘with it’ anymore,” was her statement. Shortly afterwards, a neurologist made the devastating diagnosis: early-onset Alzheimer’s disease. “We knew what to expect,” said Elaine Grünberg. “He didn’t want to lie there with tubes and diapers. He didn’t want to end his life like that.” Together they called a lawyer and drew up a living will in 2011. “We’ve talked and thought about it a lot,” she said. His directive was very specific: if he was terminally ill, permanently unconscious or severely and irreversibly brain-damaged, he only wanted pain-relieving measures. No cardiopulmonary resuscitation or mechanical ventilation. No tube feeding. No antibiotics. Gerald Grünberg died in 2016. The medical records show that Gerald Grünberg received antibiotics and other unwanted treatments and tests despite his living will stating otherwise. “They made the end of his life horrible, painful and humiliating,” said Dr. Elaine Gruenberg, “what’s the point of having a living will if it’s not followed?” However, deliberate and intentional disregard of a clear advance directive by a doctor has civil and even criminal consequences. Claims of negligence or malpractice by hospitals and doctors usually allege that they ‘failed’ to save the patient’s life. More recently, there has been an increase in complaints from family members when medical professionals and service providers have failed to follow the documented wishes of patients and prevented death.
Avoiding conflicts and uncertainties
A living will can help to avoid potential conflicts and uncertainties within the family or between medical staff and relatives. If your own wishes and ideas are set out in writing, there are clear guidelines that everyone involved should adhere to. However, there are a number of problems when dealing with living wills. Probably the most important are that living wills are often not found (in time) and that overly general formulations make it difficult to make concrete use of living wills in acute situations. It should be added that widespread use of the electronic patient records will significantly improve access to advance directives. As far as the clarity, form and content of living wills are concerned,it is certainly justified to point out that this is a personal and unilateral, binding declaration of intent and therefore a document with far-reaching legal effect! This also means that living wills should be drawn up in collaboration with lawyers who are familiar with medical law. In our opinion, the standardized processes withhealthcare professionalsrecommended by the FOPH and SAMS are only relevant in a small minority of cases.
Consideration of individual values
Everyone has individual values and beliefs, which also play a role in medical decisions. A living will enables a person to express these personal aspects in a binding manner and to ensure that their medical care is in line with their own values. By recording their wishes in writing patient’s will any person of legal age and capacity can make a legally binding decision as to which medical treatment they wish to receive or refuse in the event of incapacity. However, families, close friends and even professionals are reluctant to talk about the situation of a serious illness or a serious accident, about dying and death, and to share their own ideas and needs about how those affected would like to be treated in acute medical situations that are no longer self-determined. However, an objective and forward-looking approach to the situation of incapacity, terminal illness and death is an expression of a self-determined life and a prerequisite for dying with dignity.
- In der Altersgruppe über 65 Jahre hatten damals 35 Prozent eine Patientenverfügung erfasst ↩︎