Since the Oregon Death with Dignity Act was adopted in 1997, followed by the decriminalization of euthanasia in the Netherlands in 2001, and in Belgium in 2002, an increasing number of people are requesting euthanasia.

How does a person reach the point of asking for euthanasiaFootnote 1? What are the factors involved, for the patient him/herself, for family and friends, or for the medical team? The attitude of the surrounding society evidently plays a role via its perception of suffering and illness, as well as the value it sees or denies in fragilized human life. But rather than limiting ourselves to these general considerations, it seems better to start our discussion by seeking to understand the situation of the person him/herself, since it is his/her life and death which are at stake. A doctor may know a disease thoroughly, and even be a specialist involved in clinical research, but will still be unable to predict exactly how the disease of a specific individual will evolve. Even if the statistics show that a certain treatment gives a 70% chance of survival, the person receiving the treatment will never be 70% alive and 30% dead; he/she will always be one or the other. And given that suffering is an essential criterion for allowing euthanasia in those countries where it is legal, it seems important that we first try to understand the reality of that suffering.

5.1 Personal Suffering

This question must be approached with the greatest of respect for the person suffering, and with a deep humility on the part of those trying to understand, who do not themselves experience the same suffering. Nevertheless, if we wish to analyze the situations which can bring a person to request death, we need to understand the nature of their suffering, as they experience it. However inadequate categories may be to describe the complexity of human reactions, we can still describe suffering as physical, psychological, relational, spiritual, or existential. Frequently these different aspects overlap or intermingle, particularly in the case of a serious illness.

5.2 Physical Suffering

Physical suffering may present in various guises: pain, disagreeable sensations such as nausea, weakness, respiratory insufficiency, hunger, or thirst. It may also consist in the loss of physical or cognitive function. Certain situations may be perceived as particularly humiliating, such as urinary or fecal incontinence.

The perception of physical suffering can vary according to the circumstances: the same pain may seem unbearable alone in one’s room at 2 am and be relatively easy to bear the next day during the time spent with a friend. The perceived duration of pain, both current and remembered, is frequently longer than its objective duration [1, 2]. Other elements can aggravate physical suffering; for example, the helpless feeling of someone waiting to be given pain medication, or the anguish caused by bone pain which is likely to indicate new metastases.

Any attempt to treat physical suffering, especially that which is perceived as unbearable by the sufferer, must take this complex reality into account. We need to be wary of imposing our own, “objective,” exterior perception of the degree or duration of another’s physical suffering.

5.3 Psychological Suffering

There is a redoubled suffering in the feeling that one’s very humanity is somehow wounded or diminished by a disease which limits the ability to act, fosters dependence on others, or causes physical deterioration. Once again, there is frequently a difference between that which is felt by the patient him/herself, and that which is visible to others.

An artist whose hands can no longer function due to polymyalgia rheumatica (PMR) may feel that his incapacity to draw has taken away his means of expression and the gift which gave his life meaning.Footnote 2 A person suffering from fecal incontinence may feel imprisoned in his/her own house, by fear of humiliating “leaks” if he/she dares go out. The very relationship to the body can change: rather than being the means of life, of encounter with the surrounding world and with others, it becomes primarily the site of suffering.

The loss of physical beauty (and even disfigurement, such as that following a radical operation for throat cancer) can threaten the person’s sense of identity: “Am I still myself?” The question: “Can others still love me like this?” often implies an underlying doubt: “Can I love myself like this?”

The relationship to time also changes, since it is demarcated by the alternance between the symptoms of suffering and the temporary relief given by medication. It is also often composed of waiting for treatment or visits since the patient has very little control of the events in his/her life. Time can end up being perceived as a gradual progression of disease, filled with fear of what lies ahead.

5.4 Emotional and Relational Suffering

Whatever the depth of a human relationship may be, it cannot escape being affected by suffering, especially in the case of a serious illness. This does not necessarily mean that the impact on the relationship will be negative; sometimes illness and its consequences can be an occasion for encounters more focused on essential aspects. But relationships can also be a source of suffering for the patient: the inability to live them “as before” underlines the omnipresence of the illness in his/her life.

For a couple, intimate aspects of medical care, pain, physical changes can all challenge the body’s role in expressing love and sexuality. There are also logistical problems: if a person is hospitalized, the framework limits intimacy…especially when the medical staff may enter the room at any momentFootnote 3! The sick person may feel he/she is limited to asking and receiving (visits or assistance), rather than retaining any sort of initiative. This dependence can have varying effects on a relationship: one person may require a constant presence to face the anguish caused by his/her illness, another might refuse visits out of fear of being a burden for family or friends.

Lastly, there is the influence of our society where the value of human beings is too often judged in terms of success or “productivity.” A sick person may ask him/herself if such life is “worth” the cost of treatment or the limits the illness places on family and friends. Such questions can lead to an extreme where the patient asks him/herself if it is not “selfish” to spend so much money for treatment, rather than dying and leaving it to family members. The ill person becomes unable to conceive that his/her presence is of far more value to family members than the material legacy.

5.5 Existential and Spiritual Suffering

Death is an inevitable part of our existence. We all know this, even if our perception of death itself may vary among societies or by religious belief. A person suffering from a fatal illness is confronted with his/her mortality as an immediate reality, approaching inexorably but with an unknown date of arrival. The loss of independence may lead the patient to try to “take back control” by determining the moment and circumstances of his/her own death [3]. An article [4] on assisted suicides in Oregon during the first years after its legalization shows that close to half of the persons concerned justified their request by at least one of the following reasons: “Ready to die,” “Wanted to control circumstances of death,” and “Saw continued existence as pointless.”

Accumulated suffering can lead to a feeling of existential anguish. Even those who believe in a good and loving God may find it hard to accept the seeming incompatibility between their faith and the daily reality of their suffering, or the internal contradiction between their desire to bear patiently all that “comes from God” and the questions or feelings of rebellion awakened by their illness.

5.6 How Can One Respond to a Request for Euthanasia?

Given the cumulative aspects of suffering we just discussed, it is far from surprising that some people see their situation as unbearable and express the wish to die rather than continue to live in such circumstances. While every person does not necessarily experience all the abovementioned aspects of suffering, each bears a painful burden which diminishes the very experience of living. The wish to die rather than live “like this” can be understood as a fundamentally human reaction, a rebellion against suffering in death, and thus an affirmation of life as it should be. For this reason, we need to be wary of assuming that all those who ask for euthanasia truly wish to die.

Several articles have been published in recent years about the outcome of requests for euthanasia or assisted suicide since their decriminalization in various countries. The abovementioned article [4] describes the results of a questionnaire sent to Oregon physicians on their experience of assisted suicide since the year when it became legal. Of 165 people who requested assisted suicide, 17 (10%) died by that means; 42 (25%) changed their mind; the others were either considered ineligible by the established criteria or died a natural death before completing the process.Footnote 4 The authors noted that people changed their minds more frequently when the doctor prescribed one or more interventions, among them palliative care, antidepressant medication, social workers, or chaplain services.

In the Netherlands, 8.3% of those who died in 2015 had requested euthanasia, and 4.6% did in fact die by euthanasia or assisted suicide [5]. The national statistics show a progressive increase in the annual cases of death by euthanasia since 1990. A 2005 article [6] based on questionnaires distributed to Dutch physicians reports the following results: 44% of euthanasia requests were followed by death by euthanasia, in 25% of cases the person died before receiving the lethal drug, and 13% of those requesting changed their mind. The Belgian data [7] are similar to those from the Netherlands: an article [8] based on questionnaires sent to more than 3000 Belgian physicians in 2009 determined that 48% of euthanasia requests were eventually carried out and that 10% of those requesting changed their minds. These articles do not indicate whether there was a difference in the interventions offered to persons who actually died by euthanasia and those proposed to the persons who changed their minds. Another Dutch article [9] compared the symptoms, as described by their physicians, for cancer patients who died by euthanasia versus those who died without having requested euthanasia. It showed that more of the first group suffered from severe symptoms, and that for certain of these symptoms (nausea and dyspnea) they received less treatment, although pain was treated for all.

What can we conclude from all these statistics? First of all, the frequency of euthanasia requests is steadily increasing in those countries where it is legal under certain conditions [10]. These requests are the expression of genuine suffering: life has become unbearable for these people, who express that in requesting euthanasia. It would however be incorrect to conclude that all those who request euthanasia truly wish to die. Let us first state what seems evident: a person who expresses the wish to die by euthanasia (with the exception of a truly suicidal wish) is not saying that he/she prefers death to life, but rather that death seems preferable to life under the actual circumstances, which implies that he/she might well choose differently if those circumstances were to change. The data from Oregon, the Netherlands, and Belgium show clearly that not all who request euthanasia go on to the final act. In addition, the first article would seem to show that various interventions can help the patient to desire to go on living.

This said, we cannot conclude that all those who withdrew their request for euthanasia “changed their mind” due to the proposed interventions. It would be more accurate to say that there is an entire spectrum of reasons why someone could request euthanasia: the desire to die when faced with what is perceived as an unbearable situation, the will to choose the moment of his/her death when facing the unpredictable duration of a terminal illness, the need to know that the option will be there at a future moment where the suffering could become unbearable, or simply the need to express just how serious that suffering is.Footnote 5

How can we respond to a request for euthanasia? The first step is to truly hear the suffering being expressed: no one can judge another’s suffering, and hence none of us have the right to belittle it or to give a simplistic answer. The person who requests euthanasia is telling us the depth of his/her suffering and proclaiming just how incompatible the suffering seems with what life is meant to be. To truly listen means to be willing to hear simultaneously the suffering, the despair, and an affirmation of life expressed in the very wish for death. Often, the simple fact of being listened to, in respect for the uniqueness of the person’s experience—and thus for his/her inalienable human dignity—can already alleviate the suffering caused by feeling “less human” due to the incapacity or disfiguration caused by disease.

Once it is established that the response involves listening and accepting the person in his/her present situation, it becomes possible to work together with the person to see what can be done to help reduce suffering. Euthanasia does not improve life—it ends it by giving death. But in helping the sick person to define the areas of his/her suffering ways are opened to work together in looking for means to improve the situation. Pain can be greatly attenuated, often virtually eliminated by palliative care. It is possible to choose the most appropriate medications together with the patient, to identify and treat any adverse effects, and to provide him/her with means to adjust the dose according to the situation. For example, a person might choose to be fully awake to receive visits, and drowsier the rest of the day.

For the other forms of suffering, the logic is the same as that for pain: to prioritize listening, to attempt to understand, to relieve suffering as much as possible—always with the greatest of respect for the person concerned and his/her wishes. It is important to work together with the sick person in order to preserve or restore autonomy as much as possible, and to diminish the physical and esthetic impact on his/her sense of bodily integrity. The means will be different for each individual. A parent may choose to save his/her strength to be with the children when they come home from school, and spend the rest of the day in treatment or in bed. Another, nearing the end, may wish to go to a family reunion, visit a favorite place, or simply go out for the evening. A trip to the sea or to the countryside can reawaken an awareness of the world’s beauty for someone who has spent months in a hospital room.Footnote 6 Personal care such as a massage, a hairdo, or new clothes may sometimes help the patient to “feel him/herself again.”

When depression is involved, it is important to have a psychological or psychiatric professional accompany the person. If he/she desires it, a hospital chaplain or other religious accompaniment may also help the person to use faith resources to deal with his/her reactions or existential questions. Sometimes the mere fact that a “representant” of the religion considers it normal to ask God questions on suffering, or even to feel anger at Him, can be a source of relief and enable dialog. To accompany someone in illness is often to open doors for a person who has become incapable of imagining a better situation—but while making it clear that these are only suggestions, not “stock answers” for a particular situation. Creativity is important to look for little things which may make a difference, or help to surmount a difficult moment.

When impending death seems to be the cause of distress, it is important to understand what this means for the person entering the terminal phase of his/her illness, and to look together for ways to respond. For those who fear the physical suffering of the final moments, sometimes after a painful experience with a family member, it is important to speak frankly of the probable symptoms as death approaches, and what can be done to alleviate them. Often the sick person needs to know that he/she will not remain alone, that family, friends, or the medical team will be present until the end.

5.7 The Reaction of Family and Friends to a Request for Euthanasia

The family and close friends of a suffering person also suffer, inevitably. There is the pain of seeing a loved one suffer, of not being able to give relief, of seeing the progression of illness and the gradual diminution of strength and energy. The relationship itself is frequently affected when the person suffering no longer has the energy to show affection. The situation is even more complicated by the fact that family and friends frequently have multiple roles. They may be the principal caregivers if a patient is cared for at home. At the hospital, they are frequently called upon to assist the staff in daily care, and are also the ones to transmit the patient’s requests or questions to the medical team. They accompany, continuously or intermittently, the person suffering—while doing the best to go on with the other elements of their lives. All of this frequently leads to an immense fatigue: a husband or wife, who has to take care of the children while his/her spouse is hospitalized, continue working as the sole provider, and be present at the same spouse’s side in the hospital, will soon be exhausted. Even if several family members or friends take turns, fatigue is almost inevitable and makes it difficult for each of them to make time for his/her own emotions.

Attention to the suffering of family and friends is an integral part of caring for the sick person. Not to contrast or compare suffering, but in recognition that they are living the experience of compassion in its most literal sense: a presence to the other in the reality of his/her situation, which means a presence of love. Yet the pain of seeing a loved one suffer, or even the ongoing accumulation of fatigue, can lead family or friends to wish, even unconsciously, for death to come and put an end to the patient’s suffering – and their own. Once euthanasia is presented as a legitimate option, the family may, consciously or unconsciously, encourage the patient to turn to it as a solution or welcome his/her request as a relief. The point is not to judge those in such a position, but to be aware of the inherent difficulties. The Dutch article on the outcome of euthanasia requests [6] gives “pressure of next-of-kin on request” as one of the “reasons for reluctance in granting the request” in 10% of cases—even if in some of these cases the request was ultimately approved.

Two articles about the Belgian situation [11, 12] discuss cases where a person is put to death without having asked for it; most of them cases where the person was either unconscious or suffering from dementia. Not only was the family frequently consulted (79%) when making the decision, but “Unbearable situation for the family” was one of the reasons given in 38% of cases. These numbers show us how necessary it is to remain vigilant, in order not to respond to the families’ suffering at the patient’s expense. It is essential that family and friends be supported and accompanied; they should be helped to see how much their presence and actions are important, and also to recognize their own need for times and spaces of respite.

5.8 How Can the Medical Staff Act or React to a Request for Euthanasia?

Each member of the medical team is first of all a human being trained to care, to heal disease and suffering. Incurable or terminal illness is always difficult, since the healthcare worker is obliged to face what seems a failure to accomplish his/her mission. The experience of facing a severely ill patient and having to admit that there are no more therapeutic options left is always a painful one; and the temptation to take refuge in aggressive yet futile therapy is all too well known. It could be an oncologist who suggests more and more experimental therapies, or an intensive care team which refuses to admit defeat and resorts to more and more heroic measures. This frequently happens to medical teams facing a tragic situation: aggressive cancer in a previously healthy person, a young person with sudden sepsis or a road accident. There is also what could be termed “default” over-aggressive treatment. An elderly or debilitated person may arrive at the hospital alone and confused or unconscious. If there is no information available on the person’s previous state of health, the doctor on call will do what is necessary to save life…and may discover after the fact that he/she performed aggressive resuscitation on a person with advanced dementia or a terminal illness, who would not have wanted the treatment. At the moment, it is often the only possible decision, but afterwards healthcare workers and family may regret having taken excessive measures relative to the condition and wishes of the patient.

While the above-described situation is familiar to most hospital physicians and nurses, there is less awareness that the acceptance of euthanasia by the medical staff may originate in the same feelings which too often lead to futilely aggressive medicine. In both cases, there is a refusal to admit one’s own powerlessness; euthanasia eliminates the suffering by eliminating the patient—and so removes the obligation of facing his/her suffering. When there are no more treatment options to suggest, and no hope of improvement to offer, it can be very painful for a doctor to daily face the anguish of patient and family. Euthanasia, paradoxically, seems to restore the doctor’s authority: if he/she no longer has the ability to save life, there remains the possibility to act… by giving death.

A medical team may also welcome or even encourage a request for euthanasia as a relief from the pain involved in accompanying the patient. Similarly to what was described for futile medicine, the temptation to turn to euthanasia may be even stronger in circumstances which awaken a strong reaction against particularly “unjust” suffering, such as that of a child, or a sudden, fulminant disease. There are also situations, especially frequent when dealing with prolonged illness, where the medical team becomes emotionally involved with the patient, and hence shares the reactions of family and friends—without necessarily being aware of the fact.

In a difficult situation, created by treatment decisions which turned out after the fact to imply futilely aggressive treatment, euthanasia may seem to be a way to “undo the mistake,” and can be quietly practiced on patients who are not in any condition to request—or refuse—it.

There are other, often unadmitted motives which may encourage healthcare workers to approve euthanasia: in overloaded hospital departments, prolonged treatment of patients in the final phase of their illness may be perceived as a burden by the staff, or as a problem relative to an urgent need for available beds for those who “really need” medical treatment.

Finally, there is the question, practical yet morally unacceptable, of the connection between euthanasia and the supply of organs for transplant. A letter to the Journal of the American Medical Association [13] calculates that among the 2023 persons who were officially listed as having died by euthanasia in Belgium in 2015, 204 would have been eligible as organ donors, and then compares this number with that of the patients awaiting organ donation. Any healthcare worker who has worked in intensive care knows the extreme vigilance employed to keep the team taking care of the patient distinct from that which evaluates his/her for brain death as a potential organ donor. A connection between euthanasia and organ donation creates a risk of distorting the relationship between the treating staff and the sick person, as if the value of his/her life were to be weighed against the good his/her organs could do after death.

Admitting the potential distortions involved and understanding the influence of human reactions can help us to seek alternative paths. If both euthanasia and futile medicine make the patient pay the price of the medical professions’ illusions of omnipotence, then our refusal of these means can help us to see the true situation of the person concerned. We will need a great deal of courage and lucidity to be willing to see the true situation of a suffering human being, and to admit the reactions of family and friends provoked by this suffering—as well as our own. It is never easy to move from an active, decisive medical approach to one that listens and accompanies the person, particularly when dealing with protracted suffering. But if we dare to do this, we can learn to look for means of relief for the person’s individual, unique suffering, in partnership with the patient and his/her family and friends, using the resources of both medical knowledge and our shared humanity. The willingness to walk on this shared path with the sick person is in itself an affirmation of his/her human dignity. And that is the most essential care we have to offer.