Reasons for food refusal in transitional and terminal stages.

According to the participants, the main reason for food refusal is no longer wanting food. This is a characteristic of unnecessary and additional suffering as a cause for accelerated dying and the induction of premature death. The weakening of the body is deliberately supported. The lost meaning of eating and drinking is an additional reason for food refusal. When feelings of hunger and thirst are reduced at the end of life, social pressure about food intake is regarded as a burden.

Nurse: “Many patients can’t eat any more at all due to their primary illness. Particularly in older people, I observed that they refuse to eat–in the hope to die sooner.” (Participant: 168)

Additionally, refusing to eat and drink corresponds to the need for autonomy at the end of life. Fear of dependency and increasing need for care has an effect on the need for autonomy. Food refusal can be considered as the patient's last opportunity to express his will:

Doctor: “In an institution, eating is like the last bastion where I can be my own master. Washing, dressing, and mobilizing other persons have taken over for me.” (Participant: 81)

Participants referred to the impossibility to speak about the phenomenon of food refusal. They were not personally confronted with a situation in which a patient pressed his lips together, but they emphasized that, in some respects, the issue of food refusal is deliberately not discussed. This predominantly refers to reasons leading to food refusal, and less to the fact of not eating anymore. The participants described the wish to die with words like having enough from life and not wanting any more. This is characteristic of the meaninglessness of eating at the end of life when the body, due to disease and proximity to death, no longer signals a demand. In this sense, food refusal is interpreted as a retreat from life.

Transition to the terminal stage at the end of life is a natural process. Patients themselves intuitively perceive the beginning of another stage:

Nurse: “For old people (with dementia), this is often the only way to show that they have reached the end of their life. It is a signal that they are withdrawing into themselves. They accept the weakness of their body. From my point of view, they are not suicidal. They behave authentically, according to their perceived reality. Insofar as they receive respect, they are quiet and relaxed. In my view, the final stage of a life can't be defined primarily by means of medical diagnoses or years of life. It is felt intuitively and therefore difficult to communicate and to be taken seriously.”(Participant: 90)

The end of life cannot accurately be predicted, but reduced eating and drinking habits already indicate the terminal stage. While food intake is reduced, patients continue to express their wish to drink for a long time. Experience shows that the wish for food refusal emerges simultaneously with the wish to die. While the reduction of eating and drinking is rather implicit at the beginning, food refusal at the end of life is explicit and deliberate:

Nurse: “In my experience, these statements often express the wish to end one's life without a long time of suffering. I have observed that food refusal was no longer an issue after the patients had been informed about the possibilities of palliative care. They knew that we will do our best to reduce distressing symptoms. In the terminal stage, eating and drinking are recurrent issues. There may be some days or weeks before one can observe a reduced amount of eating and drinking. The body seems to not need this anymore. Eating and drinking lose their significance or receive another significance.”(Participant: 91)

According to the participants, the deliberate decision to renounce eating and drinking can be characterized as the patient’s last opportunity to express his will. Refusing to eat means finally being allowed to die. From the participants’ point of view, the decision for voluntary stopping of eating and drinking is taken before the transition to the terminal stage. Thereby, terminality is prematurely induced. A characteristic of fasting to death is the clearly expressed and resolute will to maintain fasting until the end.

From the perspective of the people themselves, eating and drinking can assume a compulsory dimension and exert pressure leading to exasperation. In this context, the participants mentioned the metaphor of a satisfied life. Deliberate and voluntary stopping of eating and drinking is the expression of the patient’s strong personality. It can be characterized as the last remaining chance to exert autonomy and power in a situation of dependency. Food refusal can result in a fight against the others. This is interpreted in various ways by professionals and relatives. Food refusal is partly regarded as an act of defiance against relatives, nurses and doctors, and partly in the context of self-determination and responsibility for oneself. It is considered as an expression of the patient’s will or is labeled as a form of challenging behavior. It becomes clear that food intake and drinking imply a balancing act between burden and relief for the affected person, resulting in situations affording highly sensitive ethical decision-making for all persons involved.

Food refusal is associated with not only voluntary stopping of eating and drinking but also the issue of suicide:

Nurse: “[Food refusal] is rarely accepted by health professionals. Frequently it is put on the same level with suicide. There is a high potential of conflict between relatives, staff and patients.” (Participant: 20).

Participants issued a warning not to interpret closed lips generally as an expression of voluntary stopping of eating and drinking. However, food refusal represents an active component with the aim of accelerated dying. Participants regarded it as a “real” alternative to assisted suicide and palliative sedation.

Consequences of food refusal.

Reduced food intake and drinking causes various reactions and conflicts because it is difficult to accept for doctors, nurses, other health professionals and clergies. They feel personally affected and discuss this issue with the team. Doctors have less respect for the patient’s decision to refuse food.

“(…) veins are punctured, and if nothing else works, a central venous catheter, a gastric tube or a PEG [percutaneous endoscopic gastrostomy] are applied. In my experience, doctors rarely respect a patient's refusal to eat, and I wonder where self-determination comes into effect if patients simply refuse food and it is administered without their consent, supposing to know what is best for the patient. I think the issue of voluntary stopping of eating and drinking causes much insecurity in health professionals, particularly in doctors. But nurses also intervene, assuming that they have done something good. You can't let somebody starve to death–this sentence I have heard again and again in ethical discussions with my colleagues. In my opinion, it is really possible to do this. If the person has reflected it and has decided this for himself, then this seems to me the most natural way to die.” (Participant: 70).

Many questions concerning food refusal remain unanswered (Table 3) and cause uncertainty due to various consequences. For example, oral medication is no longer possible, frequently resulting in the application of artificial nutrition. This is justified by arguments referring to the necessity and the compulsion to act in this way. Additionally, the participants mentioned that persons with loss of appetite at the end of life wished to receive parenteral nutrition:

“Oncological conditions are often associated with loss of appetite. I make a difference between this and real food refusal. Persons with loss of appetite partially wish to receive parenteral nutrition. When I worked in long-time care I experienced food refusal more frequently than in patients with an oncological condition.” (Participant: 118)

If parenteral interventions are no longer possible, infusion therapy represents the last remedy. Health professionals’ fear and stress are often associated with their difficulty of accepting food refusal, resulting in various forms of forcing the patient to eat. Participants also mentioned that patients revised their decision for food refusal, as they experienced too-intense feelings of hunger. They accepted high-calorie drinks.

The only positive association mentioned by the participants was related to less death rattle, less edema and less ascites in the terminal stage due to restricted drinking. The participants assume that food refusal can be performed in a calm and detached way if the consequences are taken seriously and treated with respect.

Challenges concerning relatives.

Responding to relatives’ reactions towards food refusal is challenging for the participants. There is a high potential for conflict between relatives, professionals and the patient with regard to food refusal. Respecting and tolerating the decision is described as demanding. From the relatives’ point of view, difficulties can arise particularly because of their worries and their lack of understanding:

“For relatives, it is often difficult to understand because eating is vitally important. If someone doesn't eat, he will die. And if someone actively decides not to eat, the reason for his death is not the illness, but the patient himself causes his death. There are often misunderstandings in daily professional practice. A strong sense of tact and phantasy are needed to do justice to the patients. Phantasy in order to possibly stimulate the appetite again and to ensure quality of life for the patient or sense of tact in order to respect the patient's wish and to communicate it to his relatives and to health professionals of other disciplines.” (Participant: 89)

Primarily, relatives associate food refusal with starving to death and dying from thirst, which is terrifying for them. Relatives turn to professionals with pressing questions: You can't let him starve to death, can you? or You don't let him die him of hunger, do you?. To signify the decision against life and in favor of death by means of food refusal is difficult for relatives to understand. Respecting this decision is described as particularly challenging for them. It is the task of professionals to mediate between patients and relatives. The patients’ situation and the contact with relatives causes feelings of helplessness and powerlessness in health professionals.

Uncertainty associated with food refusal evokes fear. Relatives often demand that professionals spare no effort to ensure food intake and drinking. They insist that the patient should eat at any rate by offering the favorite meal or asking for parenteral nutrition. Additionally, relatives often imagine that the patient will gather their strength again. They try to influence professionals as well as the patient by insisting, persuading and convincing.

Attitudes in the context of patient autonomy.

Attitudes and personal convictions concerning food refusal are very heterogeneous, depending on the participants’ personal knowledge and professional networks in practice:

“It is accepted very differently by nurses. They respond variously. Depending on their level of knowledge or further education, it generates discussions.” (Participant: 37)

The participants’ attitude towards food refusal was expressed in terms of respect (52%; n = 42 nominations) and acceptance (48%; n = 38 nominations). While respect means to take the decision into account, the term acceptance implies a positive evaluation of the decision. Half of the participants either respected or accepted the decision. The attitudes of principally respecting closed lips, the personal will, the decision as well as the patients’ self-determination were not shared by all participants. Even if a person suffers from dementia, the decision has to be taken seriously. 'No' means 'no' and remains 'no', as a participant said. If persons cannot articulate themselves, their decision at least has to be accepted. Acceptance implies permitting natural consequences. With regard to food refusal, an open and accepting attitude is a precondition for adequately responding to this phenomenon. The autonomy of every person to follow this deliberately chosen way has to be taken seriously. Food refusal allows expressing one's will in a self-determined, autonomous way, even under conditions of cognitive limitations. According to the participants, food refusal represents a basic right of the affected persons. The wish and will of the patient have the highest priority.

The participants’ attitude is constituted within a field of tension between their personal interpretation of the metaphor closed lips, the attribution of eating and drinking and the acceptance of the natural end of life. From their point of view, starving to death and dying of thirst are only given when the patient really suffers from hunger and thirst. Thus, the term refusal is not acceptable, as it reduces a complex issue in a disadvantageous way. It is not a question of maintaining life by means of eating and drinking but of ensuring quality of life based on reduced food intake. The term refusal tends to hide aspects concerning quality of life.

Challenges of responding to food refusal.

Several challenges are characteristic for responding to food refusal. On the one hand, decisions have to be made; on the other hand, much phantasy is afforded to maintain patients’ quality of life.

Oscillating between practical and ethical decision-making represents another challenge. On the one hand, food is overrated in the final stage of life; on the other hand, a sense of tact and phantasy are necessary to do justice to the patients. It is important to know the patient well and to establish trust. In particular, knowing the patients’ needs is essential for accepting food refusal. If trust is missing, the decision is accepted only after clarification or informed consent. Biographical work in the context of food refusal is essential to ensure traceability:

“I frequently care for patients who wanted to make use of food refusal in order to end their lives. However, this mostly remained a remark, and I am very pleased about that. For me, it is hard to imagine that someone who has reached the end of his life but is physically still relatively fit wants to end his life in this way. I assume that starving to death is quite painful. In my experience, this remark often suggests that patients wish to end their life without a long time of suffering. Therefore, I found that food refusal was no longer an issue after patients were informed about the possibilities of palliative care.” (Participant: 89)

Personally, food refusal is understandable, but enduring it and holding on are challenging. Palliative care allows the caregiver to respond to food refusal in a professional way. The team attitude is highly important. Interdisciplinary communication with regard to food refusal is mentioned as an additional challenge. In critical situations, a firm basis of communicative skills may prove effective.

Searching for reasons and “doing it differently”.

Responding to food refusal in a professional way implies searching for reasons and understanding them. Besides physical symptoms, psychological and social dimensions are also mentioned. Additionally, symptom clusters or side effects of medications or chemotherapies are described as possible reasons for food refusal. Depending on individual patient situations, food refusal should be regularly assessed. Besides treatable reasons, it is also necessary to assess the patients’ readiness for food refusal.

The professional response to food refusal means “doing it differently” and to offer alternatives. Serving meals is time-consuming. According to the participants, cheering up is not the same as persuading. The fine line between cheering up and persuading should not be passed. Thus, it is important to regularly assess the situation, without asking explicitly at every meal. Additionally, it should be assessed to what extent another person offers food and drink. An additional aspect of the fine line consists of preventing over-protection of persons at the end of life, as a participant said. Referring to compulsion or necessity does not affect the basic problem resulting in refusal and renouncement. Meal times are often too restrictive and should be adjusted to the needs of the affected person. Despite refusal, it is indispensable to offer meals and to plan sufficient time for this. Another element to be considered is communication as a form of caring. If eating is no longer possible, it is necessary to offer conversations to ensure human attention until death. Doing it differently means to use phantasy to stimulate the patient's appetite. Finally, participation in rather than quantity of social life is important.

A professional response requires introducing educational interventions, as time for conversations and emotional support is often missing. Information and instructions are very important in understanding the process leading to food refusal:

“(…) it is important to communicate this issue and to know the attitude of the patient. Relatives need information and counselling in order to do something good for the patient, for example helping with oral care. For relatives, it is often very difficult to endure.” (Participant: 22)

In the case of food refusal, discussions with relatives are inevitable. They need information about the reasons and consequences of this phenomenon. Informative material for relatives is often missing. Doctors and nurses rarely know how relatives experience food refusal and which conflicts can arise within families. Joint decision-making reduces the psychological pressure to consider the positive aspects of food refusal. Finally, it is important to build a solid basis for joint decision-making.