In an opinion poll, carried out in 1993 in The Netherlands, one of the questions asked was: “Do you think that someone always has the right to have his life terminated when he is in an unacceptable position without any prospect?” The outcome was clear: 78% said “yes,” 10% said “no,” and 12% had no opinion. When divided into separate groups by religion, the percentage of those who agreed was 93% for those who professed no religious faith, 74% for Roman Catholics, 60% for members of the Reformed church, and 48% for other religions.
In 1991 van der Maas published the results of an investigation, performed at the request of the Ministry of Justice, concerning euthanasia and other medical decisions about the end of life. Dependent on the region in The Netherlands, 40 to 60% of doctors admitted to having carried out euthanasia.
The official definition of euthanasia appears in the Report of the Dutch Government Commission on Euthanasia, published in 1985. Euthanasia is “a deliberate termination of an individual’s life at that individual’s request by another. Or, in medical practice, the active and deliberate termination of a patient’s life, on that patient’s request, by a doctor.” Article 293 of the Dutch Criminal Code says: “Anyone who takes the life of another on that person’s express and serious request will be punished with a prison sentence of a maximum of twelve years.” So, active euthanasia, despite the fact that it is practiced on a relatively wide scale in The Netherlands, remains a criminal offense. How are we to reconcile this apparent contradiction?
In 1972 the Royal Dutch Medical Association issued a provisional statement on euthanasia. In its view:
… legally euthanasia should remain a crime, but if a physician after having considered all the aspects of the case, shortens the life of a patient who is incurably ill and in the process of dying, the court will have to judge whether there was a conflict of duties which could justify the act of the physician.
Over recent years jurisprudence in The Netherlands has developed to the extent that the legal view now is that, although euthanasia is not a part of regular or routine medical care, a physician will be judged guilty but not culpable if he or she performs euthanasia or assists suicide in the correct way. This legal decision is based on the concept of the state of emergency within which the physician acts. This state is thought to be applicable because the physician is confronted with conflicting obligations towards the patient as a caregiver and health professional, and towards the law as a civilian. Professional obligations force him or her to act against the formal statements of the law, but in accordance with principles developed in medical ethics and in congruence with the explicit wish of the patient.
The current position is that most doctors practicing euthanasia are not prosecuted if they have met the substantive requirements published by the Royal Dutch Medical Association:
- The patient makes a voluntary request.
- The request must be well considered.
- The wish for death is durable.
- The patient is in unacceptable suffering.
- The physician has consulted with a colleague who agrees.
In 1990 the Association and the Ministry of Justice agreed upon a notification procedure that contains the following elements:
- The physician performing euthanasia or assisted suicide does not issue a declaration of a natural death but informs the local medical examiner of the circum-stances by filling in an extensive questionnaire.
- The medical examiner reports to the district attorney.
- The district attorney then decides whether or not a prosecution should be instituted.
This notification procedure has been laid down in regulations under the Burial Act and acquired formal legal status in 1994.
It should be noticed that, in common with other jurisdictions, the following practices in respect of terminally ill patients are not regarded as euthanasia, but rather as good and acceptable medical practice: stopping senseless or futile treatment; stopping or not commencing treatment on request of the patient; using analgesic medication in high doses to alleviate suffering even when this may shorten life (the principle of double effect).
The term passive euthanasia is not one that is used in The Netherlands, as will be explained later. In discussing voluntary euthanasia it must be borne in mind that this is not possible without also considering the right of autonomy or self-determination. In The Netherlands, the patient is informed from the beginning of the diagnosis and the prognosis of his or her condition. As a result, the patient is frequently put in the position of having to decide, together with the doctor, what course of action is appropriate. The central question is whether life under the known circumstances will be acceptable for the patient. The right of self-determination is respected, and the patient has the indisputable right to judge suffering as unbearable and to request euthanasia.
What is suffering and what makes it unbearable? Suffering is specific for each human being. Only someone who is conscious and capable of deliberative retrospective and prospective contemplation can suffer. The person who suffers com-pares weighs, and evaluates life in the past and in the future. Suffering, therefore, also includes grief, depression, concern, and anxiety. But it may also include the essential human characteristics of hope, acquiescence, and acceptance. So, suffering is strictly individual and determined by the psychological tensions and inner resources of the individual enduring the condition.
However, the suffering of others is largely outside our comprehension and difficult to judge. We have to try to understand the suffering of another based upon our close observations and leaving aside our own emotions as much as possible. It takes long years of experience with palliative care to be as fair as possible in our judgment. In any event, we must seriously ask ourselves from where comes the authority to judge the suffering of another to be bearable when that individual tells us that it is not.
What makes suffering unbearable? Of the total number of euthanasia patients, 85% have cancer. I will describe their main problems, distinguishing physical and psychological causes, which are closely related to each other. The most important physical causes generally are:
- loss of strength, making the patient totally dependent on nursing care. Almost always this is accompanied by extreme fatigue that cannot be alleviated in any way and is experienced as exhausting.
- shortness of breath;
- vomiting, which is in most cases exhausting;
- incontinence, experienced as degrading;
- bedsores in cachectic patients; and
- pain, which was and still is the most common main symptom.
Nowadays, pain can be adequately controlled without adversely affecting the normal psychological functions of the patient. In my hospital, we could control pain in almost 90% of patients. But in most countries, even in Western Europe, pain is still the main problem for cancer patients.
The most important psychological problems are:
- Anxiety. Practically every patient has anxiety about pain and suffering, frequently based on bad or wrong information. When, for example, will doctors stop using the words cancer pain, promulgating the view that pain associated with cancer is worse than other pain? Much more difficult to combat is the anxiety about spiritual and physical decay, deformation, and the need for total nursing and becoming totally dependent on others. After all, we cannot protect the patient against these developments. Anxiety about death itself, which will bring the inevitable parting from this life, the world in which one has lived and worked, and from all beloved relatives and friends and anxiety about the moment of death is common and may be culturally and religiously determined.
- Grief is an important part of emotional distress. However much we all realize that death is linked to life, the certainty of the approaching end makes us sorrowful. Grief can be about the loss of relatives and friends and earthly things. Grief will be worse the less that it can be expressed, especially in the beginning when the patient and his relatives conceal their grief from each other. Grief is then bottled up and becomes sorrow. Grief can become bitter when the patient poses the question why this has happened to him or her. Such grief can turn to rancor, revolt, and aggression. Grief sometimes depresses the patient.
- Human dignity. Every person, and especially every patient with a terminal disease, has his or her own feelings about human dignity, influenced by society, culture, and religion. In a civilized world, we all try our best to protect and respect the human dignity of others, and we see this respect as being a natural human right. We see it also as a right to judge for ourselves what constitutes our own human dignity. As competent persons, we do not expect others to decide about our own dignity.
These physical and psychological problems can be overcome by patients or they may become unbearable and trigger a request for euthanasia. Undoubtedly, the best way of dealing with the physical and psychological problems of terminally ill patients is by the provision of supportive and adequate palliative care by a team of dedicated nursing, medical, and spiritual caregivers, as founded by Dame Cicely Saunders in the St. Christopher Hospice in London. So much has been written and so much experience gained about palliative care that it is not necessary to describe here the principles underlying terminal care.
This care is best organized in general hospitals, nursing homes, hospices, or at home, depending on the different national healthcare systems. After a project of seven years in a nursing home in Rotterdam it was concluded that this type of care in separate units had no advantages.
At present, in The Netherlands, 50% of cancer patients die at home, supported by the National Organization for Voluntary Terminal Care; 40% die in a general hospital and 10% in a nursing home.
I was working in a general hospital in Delft when we officially started a Terminal Care Team in 1973. From the beginning, we learned to accept and not to deny the fact that we cannot stop suffering or make it bearable in all cases. We accepted the possibility of euthanasia only as the last dignified act of terminal care. It is equally true that one cannot practice terminal care without the possibility of euthanasia.
The question must now be asked, what are the principal reasons for a euthanasia request in The Netherlands? The most mentioned factors by patients are:
- loss of strength and fatigue, experienced as exhausting, 85%;
- loss of human dignity, 60%;
- complete dependence, 33 to 74%; and
- pain, as the sole reason for the request, was mentioned only by 5%.
It is important that many patients see their suffering as senseless, and they see no reason to continue to live in their own specific circumstances. But there is another factor, almost never mentioned. Many patients who have arrived at the point of total acceptance and acquiescence in their fate may no longer attach any value to their lives, relatives, friends, or their world. They have reached a state of total detachment, something that is especially difficult for relatives and caregivers to understand and to accept. These patients long for an early, gentle death. They regard any hesitation from others in fulfilling their wish as unjustified and as a denial of their last wish. This longing to die is, in my opinion, also part of normal human life.
Some doctors may say that the above-mentioned reasons for requesting euthanasia must be the result of depression and will prescribe anti-depressant drugs. These doctors, in my opinion, are unobservant and seem to be more preoccupied with their own concerns than with serving patients’ needs. To send a terminally ill patient to a psychiatrist is an insult.
Active euthanasia has been practiced in The Netherlands for more than twenty years. Today the total number of patients is estimated as 3,500 to 4,000 cases a year. Of this number, more than 80% have cancer, meaning that about 9% of our cancer patients will have euthanasia. The remaining group is about equally divided among AIDS patients; patients with multiple sclerosis, amyotrophic lateral sclerosis, and muscular dystrophia; and a group of very old patients with several complaints.
The Dutch position has compassionate supporters and vehement opponents all over the world. Some of these are well informed, while others have gathered their information through hearsay or tendentious articles by opponents. Opponents raise three main problems in accepting euthanasia: the slippery slope argument; the potential for abuse; and the effect on the relationship between patient and doctor.
In my view, after so many years, there is no evidence to support the slippery slope argument. Some will mention that the investigation of van der Maas has shown that, in about 1,000 cases, 0.8% of all deaths in The Netherlands, life was terminated without the explicit request of the patient. Many articles followed. It became clear that in 60% of these cases the doctor had earlier information about the patient’s wishes, albeit short of a specific request; in all other cases the patient was suffering but discussion was not possible.
For me, it is acceptable that a doctor who sees that his long-time patient is suffering and will die within a short time but is unable to express his or her wishes may consider it a duty to shorten the patient’s life. But in all these cases a decision has to be made together with the relatives and other care-givers.
Others will mention the recent acceptance of two Dutch courts to end the life of a severely handicapped newborn when no therapy is possible, when the baby is suffering, and when the infant will not die spontaneously.
Also, the acceptance by the High Court of unbearable psychic suffering as a rea-son for euthanasia will be seen as wrong. In all these cases one has to inform oneself as much as possible: the Royal Dutch Medical Association is willing to help you.
As to the question of abuse, it should be remembered that every citizen has the constitutional obligation to report a crime. During the last two decades, at least 50,000 patients have died as a result of active euthanasia, yet not a single case of abuse has been so reported. And this is so despite the fact that the opponents of euthanasia are singularly alert and that excellent social control exists in The Netherlands. We have a traditional and unique relationship between patients and their doctors and euthanasia has improved these relationships.
As mentioned earlier, we do not use the words passive euthanasia. In other countries it is suggested that euthanasia or a mild death can be the result of passivity. It can be defined as “the conscious decision by a doctor either to discontinue an existing treatment or not to initiate treatment as a result of which the patient dies.” It also implies that in most cases the life of the patient will be shorter. But does it also imply that there will be less suffering during that shorter period? Manifestly, it does not inevitably mean this. Let us face the facts honestly and objectively.
If we stop treatment or do not begin it in the conviction that this kind of treatment is senseless, perhaps we will prolong suffering. Sometimes the doctor will take that initiative and sometimes the patient will refuse further treatment. Thus, the patient will die as a direct consequence of the condition from which he or she suffers. And that may not be a “good death.”
Of course, support and palliation will be continued until the end, but this has nothing to do with euthanasia. That means that the word euthanasia is completely inappropriate, and it gives the false impression that passivity has something to do with euthanasia, but passive euthanasia is no more than “abstention”—a hypocritical euphemism and not in the interest of a terminally ill patient.
Of course, after abstention, it is possible to make dying easier in various ways. But if this occurs with barbiturates, neuroleptics, and morphine in such high doses that life may be shortened, then there is arguably no difference between this and active euthanasia. So, passive euthanasia becomes a cover for active euthanasia, which is not allowed.
In the hospital where I have worked, the decision to carry out euthanasia was the result of a multidisciplinary discussion by two doctors, the head nurse, and a spiritual caregiver, all equal in the decision-making process. After a request for euthanasia everybody tried to improve the care in order to avoid the need for euthanasia, because none of us wanted to do euthanasia.
We always hesitated and decision-making was always a process of days. The principles that guided this process were respect for both life and death, the respect for the self-determination and self-responsibility of the patient, respect for the conscience of every caregiver, and respect for the law. Euthanasia was seen as the last dignified act of terminal care.
Until now, the emotions of everyone involved have not been mentioned, but they are most important. It is extremely difficult to terminate the life of another. Yet, moments of carrying out euthanasia have been the most decent and the most emotional moments in my life as a doctor. These patients had become my personal friends during the long period of their terminal weeks.
After euthanasia, I was always both sad and satisfied. Sad about the fact that I had lost a friend and satisfied that I was able to stop the unbearable suffering of that friend. Should I be asked: “Do you think that it is right for a doctor to end the life of a patient, from a medical and ethical point of view?” I would counter with another question: “Do you really think it is right to let die a patient in unbearable suffering?”
Pieter Admiraal, “Voluntary Euthanasia: The Dutch Way” (Chapter 7) Death, Dying and the Law (Dartmouth, England: 1996).