Dutch perspectives on palliative care in the Netherlands.

• Author: Cohen-Almagor, Raphael

Abstract: This study reports data gathered via extensive interviews with some of the leading authorities on the euthanasia policy that were conducted in the Netherlands. They were asked: It has been argued that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands.

The responses were different and contradictory. Many interviewees agreed with the statement. Almost all of those agreeing with it said that only during the late 1990s were people beginning to admit that there was a need to improve palliative care. Some interviewees insisted that doctors first need to explore other options for helping the patient prior to choosing the course of euthanasia. Other interviewees thought that palliative care is well developed in the Netherlands and that euthanasia has actually paved the way for calling more attention to palliative care.

**********

Since the early 1970s, euthanasia and physician-assisted suicide (termed together by many Dutch scholars as "EAS") have been practiced in the Netherlands. The Dutch experience has influenced the debate on euthanasia and death with dignity around the globe, especially with regard to whether euthanasia and physician-assisted suicide should be legitimized or legalized. The three relevant categories of Dutch doctors who are involved in the practice of euthanasia and physician-assisted suicide are General Practitioners (GPs), nursing-home doctors, and specialists. Every person in the Netherlands has a more or less permanent relationship with a GE who provides primary health care and is the point of entry for specialist care. GPs have the most extensive experience with euthanasia insofar as they discuss it most frequently with their patients, they receive two-thirds of all requests, and they are generally the most willing to perform it (about 90% of Dutch doctors have either practiced euthanasia or would be willing to do so). (1) The level of experience with euthanasia among specialists is about half that of GPs (with 3% of all deaths in their practice attributable to euthanasia). By contrast, euthanasia plays a small role in the practice of nursing-home doctors, who receive relatively few requests (only a fifth of them have ever honored one). (2)

The Guidelines of the Royal Dutch Medical Association (KNMG) (3) speak of "persistent request." A request made on impulse or as a result of a temporary period of depression should not be honored. The request must have been discussed repeatedly and thoroughly a number of times during several conversations. However, Gerrit van der Wal and colleagues conducted a survey among a random sample of family doctors, showing that in 22% of cases the request was made only once. (4)

The rate of record keeping (5) and written requests (6) in euthanasia cases improved during the 1990s, but the situation is still unsatisfactory. There are now written requests in about 60% and written record keeping in some 85% of all cases of euthanasia. (7) A most troubling phenomenon is the significant number of unreported euthanasia cases. Since November 1990, new state regulations require physicians to report cases of euthanasia to the local coroner and the public prosecutor. The number of reports rose from 454 cases in 1990 to 591 in 1991, to 1323 in 1992, to 1318 in 1993, and to 1424 in 1994. In 1999, the total number of reports was 2216. (8) This considerable increase suggests that more physicians are willing to acknowledge and report their actions, having seen that their colleagues are not being prosecuted for performing euthanasia. At the same time, the Remmelink Commission established by the Dutch government detected in its 1990 comprehensive report 2300 cases of euthanasia, which means that about half are still unreported. (9) John Griffiths argues that the reporting rate for euthanasia (10) was 18% in 1990, and that by 1995 it had risen to 41%. A situation in which less than half of all cases are reported is unacceptable from the standpoint of effective control. (11)

The Dutch approach to euthanasia is said to reflect an open attitude towards tackling a difficult moral issue. For more than twenty years, the debate has been discussed openly in all circles of society It has been considered in the Parliament, addressed by the courts, debated in religious institutions, and has required the constant attention of the Royal Dutch Medical Association. It continues to be a focus of the media, and polls have been conducted from time to time to examine public attitudes on this issue. (12)

Despite this apparent openness, the 1990 study shows that 22% of physicians feel that they should not always be required to report euthanasia as unnatural death. The legal ambiguity that existed for twenty years made Dutch physicians feel uncomfortable with reporting euthanasia, citing prosecution as an objection. They emphasized that they would be prepared to report euthanasia as such, but did not wish to be considered as a suspect in a criminal act. Thus, the uncertainty of what might happen to the physician was considered an obstacle to reporting an unnatural death. (13) To address this issue, a careful, clearly stated procedure was needed, one that would be explicitly recognized under the law.

On November 28, 2000, the Dutch Lower House of parliament, by a vote of 104 for and forty against, approved the legalization of euthanasia. On April 10, 2001 the Dutch Upper House of parliament voted to legalize euthanasia, making the Netherlands the first and at that time only country in the world to legalize euthanasia. Forty-six members of the seventy-five-seat Senate voted for the Termination of Life on Request and Assistance with Suicide Act; twenty-eight voted against; one member was not present. The new legislation makes it legal to end a patient's life, subject to the following criteria: the patient must be suffering unbearable and unremitting pain, with no prospect of improvement. The patient must make a sustained, informed and voluntary request for help to die. All other medical options must have been previously exhausted. A second medical opinion must be sought to confirm diagnosis and prognosis. The termination of life must then be carried out with medically appropriate care and attention. The physician is obliged to report the death to the municipal pathologist, specifying whether the cause of death was euthanasia or assisted suicide. (14)

Physicians will be immune from prosecution for helping a patient to die, as long as they follow this set of Guidelines. They will still report cases of voluntary euthanasia to the coroner and a regional panel, who can recommend prosecution leading to a prison sentence of up to twelve years if the Guidelines have not been followed. The new Act changed the emphasis on who should prove guilt or innocence if the code of practice is breached. Previously, the onus was squarely on the doctors to prove that they had followed the Guidelines and were therefore innocent of any offence. But the new law shifts the responsibility for proving guilt to the regional panels. (15) Time will tell to what an extent the new law will improve the situation.

The concern of this article lies with the practice of palliative care. The World Health Organization defines palliative care as the "active, total care of patients whose disease is not responsive to curative treatment," maintaining control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. (16) Impediments to adequate pain treatment include health care providers' fear of inducing physical or psychological addiction, misconceptions about pain tolerance, and assessment biases. (17) Herbert Hendin testified that his experience with a few Dutch physicians who had performed or been consultants in dozens of euthanasia cases indicated that they were uninvolved in palliative care. (18) Zbigniew Zylicz, one of the few palliative care experts in the Netherlands, regards the lack of hospice care and the fact that there are only seventy palliative care beds in the country as reflections of having the easier option of euthanasia. He argues that palliative care is virtually unknown in the Netherlands and that people mistakenly equate palliative care with the use of morphine or other drugs, not understanding that it involves much more than the use of painkillers. (19) The aim of this study was to determine what leading authorities in the euthanasia field in the Netherlands think about this issue, i.e., whether they think their country has a developed practice of palliative care.

Methodology

A review of the literature reveals complex and often contradictory views about the Dutch experience. Some claim that the Netherlands offers a model for the world to follow, that close monitoring of end-of-life decisions is possible, and there are no signs of an unacceptable increase in the number of decisions or of less careful decisionmaking; (20) others believe that there is a "culture of death" in the Netherlands, (21) that its model represents danger, rather than promise, and that the Dutch experience is the definitive answer regarding why we should not make active euthanasia and physician-assisted suicide part of our lives. (22)

Given these contradictory views, it has become clear that fieldwork is essential to developing a more informed opinion. Having investigated the Dutch experience for a number of years, and after thoroughly reading the vast literature published in English, I went to the Netherlands for one month in the summer of 1999...