Eating and drinking are social activities that mean more than the ingestion of food and drink. They are associated with talking and sharing a meal with others. It is not surprising, therefore, that a person’s refusal to eat and drink is a great challenge for both his or her family and the health professionals involved. This is why it is important to clarify first why a patient will not eat or drink.

The reasons for fasting can be manifold. For example, mental illnesses such as depression or anorexia or cognitive changes due to dementia may be the underlying cause. In such cases, food might not be recognized as such, it might not be considered important, or it might be rejected out of fear of gaining weight. Physical impairments such as pain in the mouth area or finding it difficult to swallow can also prevent a person from eating.

Various disorders as well as advanced age can reduce a person’s desire to eat (loss of appetite = anorexia), or he or she may eat but may still lose weight pathologically without intending to (cachexia).

A special form of fasting are politically motivated hunger strikes to draw attention to grievances and improve an ongoing situation. What these forms of food refusal have in common is that while they are an expression of an illness, an impairment, or an attitude, the goal is not to end one’s life, even if this might be the consequence.

For some years now, another form of food refusal has been discussed in science, politics, and society. It is the voluntary refusal of food and fluids (VRFF). VRFF is the term used to describe the actions of a sane person who autonomously and in a self-determined manner refuses to ingest either food or drink with the aim of accelerating the dying process or ending his or her own life prematurely. The person’s intention to end his or her life by means of VRFF differs significantly from the forms of food refusal described above.

VRFF represents an option to hasten one’s time of death in order to end unbearable suffering. In doing so, the person will not take any lethal drugs. He or she will simply withstand the desire to eat or drink, which will eventually lead to death. Determining one’s own time of death has a long history dating back to antiquity. In the current zeitgeist, self-determination at the end of life is becoming more important.

Increasingly, society is becoming aware of this option. In the German-speaking world, newspaper reports and the news in particular tend to use the term “Sterbefasten” (end-of-life fasting), as it is catchier. However, no one should be deceived into thinking that the process of dying is simple. Nor should it be mistaken for a ritual, such as the fasting that occurs in a religious or spiritual context. After all, the focus is not on physical or mental purification but on dying.

The choice to engage in VRFF is made by a person who has the capacity to make this decision, is well-informed, and who then deliberately stops taking in food and drink with the intention of shortening his or her life and relieving him- or herself of unacceptable suffering. Such a person must be capable of judgment and have the ability to eat and drink but refuses to do so of his or her own free will.

People of all ages choose this path, with over 90 percent of those affected being over 66 years of age, and among these, most being over 80. In most cases, the individuals choosing to die in this way suffer from cancer or another physical or mental illness, while over a quarter have no underlying serious illness. Regardless of the disease they may have, most people suffer from fatigue and pain, see no prospect of improvement in their condition, and are afraid of being dependent on others.

Although the decision to engage in VRFF is a highly individual and autonomous process, the person engaging in it is dependent on the help and support of family members and health professionals. Initially, food deprivation does not have a significant impact on the person not eating. While he or she will start to feel hungry, this feeling is usually tolerated well and mostly disappears after a few days. The feeling of thirst is more likely to be perceived as unpleasant and will remain noticeable throughout. Regular moistening of the mouth and lips prevents dry flora and can reduce the feeling of thirst a little.

In the course of the VRFF and with each additional day without eating and drinking, the body of the person willing to die becomes weaker. In this state, he or she will find it increasingly difficult to sit up in bed or change position, and he or she will be dependent on the care and support of relatives and professionals. For this reason, it is necessary to arrange for the support of others in advance.

To generate in-depth knowledge about VRFF, we are exploring the phenomenon through a variety of access routes. In doing so, we are funded in large part by sponsors and supported by many key individuals who provide us with access to various people we include in our research. We would like to take this opportunity to thank them for their support and look forward to further joint projects. Our current projects are described below.

In this national study, in- and outpatient long-term care managers and general practitioners all over Switzerland were surveyed by means of a questionnaire about voluntary stopping of eating and drinking (VSED; also known as voluntary refusal of food and fluids (VRFF)). The aim was to determine how often individuals choose VSED. In addition, the study considered the experiences of experts with VSED. First results with regard to Swiss long-term care are presented in the video "Swiss survey reveals opportunities, challenges in caring for patients choosing VSED."

The results from our survey of general practitioners showed that most of them are aware of VSED as an option to end life prematurely and that 43 percent of participants have already cared for a person who chose this path. According to the analysis, 0.7 percent of all deaths in Switzerland in 2017 are attributable to VSED.

In a further step, we combined the results of the three target groups (general practitioners, outpatient and inpatient long-term care managers) and made group comparisons. These showed that the attributes age, gender, professional group, and professional experience have no influence on the response behaviour of participants. On the other hand, there are significant correlations if participants have already cared for a person engaging in VSED and based on their place of residence.

In a further step, we combined the results of the three target groups (general practitioners, outpatient and inpatient long-term care managers) and made group comparisons. These showed that the attributes age, gender, professional group, and professional experience have no influence on the response behaviour of participants. On the other hand, there are significant correlations if participants have already cared for a person engaging in VSED and based on their place of residence.

• Participants with VSED experience have a more positive attitude towards VSED than those with no VSED experience.
• Participants from the Lake Geneva region and the canton of Ticino were more likely to express moral concerns, and these were more in conflict with the attitude within their profession, than participants from the other five major regions (Espace Mittelland (the cantons of Bern, Fribourg, and Jura), Northwestern Switzerland, Zurich, Eastern Switzerland, and Central Switzerland).

As part of this project, five group interview sessions were conducted with medical and nursing staff, employees of consulting institutions, volunteers, pastoral care providers, and others. The aim was to gain a better understanding of voluntary refusal of food and fluids (VRFF). For example, participants discussed ways to communicate with the public and issues to avoid in that context. They also considered the perspectives of individuals involved in VRFF care and support - in particular, what responsibilities they have and what challenges they are faced with. The results of this study are expected to be released in late 2020.

As part of this study, interviews were conducted with relatives who had cared for a person engaged in voluntary refusal of food and fluids (VRFF). The relatives had come forward after watching a documentary on TV. The interviews took the form of personal or telephone conversations and were digitally recorded. The participants described, for example, the character of the deceased person, the reasons why he or she had chosen VRFF, and also how the process of dying had gone. They were also asked how the situation had been for them, and what had been easy and what difficult for them at the time as well as afterwards. The results of this study are expected to be released in the summer of 2020.

NAFLEX (Nahrungsverweigerung - Erfahrungen von Professionellen) is a study on patients’ refusal of nutrition and the experiences of professionals in that context. It includes a survey of oncology and palliative care specialists who were asked about their experiences concerning the nutrition and hydration of patients. Questions included, for example, what associations the subjects had with the slogan “Nahrungsverweigerung – die Lippen bleiben zu” (Food refusal – the lips remain closed).

A total of 350, mainly female professionals participated in the survey; they associate mainly negative aspects with “food refusal”:

• “Physical aspects” such as loss of appetite, nausea, pain, shortness of breath,…
• “End-of-life aspects” such as dying, death wish, end of life,…
• “Mental aspects” such as fear, dementia,…

Positive associations include:

• “Ethical aspects” such as autonomy, self-determination,…

We recommend that these associations are taken seriously because they determine the thinking and actions of professionals. It should be examined whether it is not possible to reduce the negative associations.

In this cross-sectional study, registered nurses who work in the nursing homes of the Liechtenstein old age and hospital services (Liechtensteinische Alters- und Krankenhilfe) were asked about their opinions, attitudes and experiences. The online survey was conducted in cooperation with St. Gallen University of Applied Sciences. It is based on a shortened version of the evidence-based standardized questionnaire designed for the VARIED project and was analysed descriptively.

The results of the survey show that caregivers in nursing homes are not infrequently confronted with a resident’s wish to die, and that the wish to die through voluntary refusal of food and fluids (VRFF) also appears to be increasingly prevalent in nursing homes. While nursing home residents generally receive support with regard to their choice, and while most caregivers can reconcile this support with their religion or worldview, moral concerns were clearly expressed. The findings provide valuable guidance for the development of institutional attitudes.