‘Foreigners do not understand us’
The boundaries of euthanasia in Belgium and the Netherlands keep expanding, says a world expert.
Raphael Cohen-Almagor, of the University of Hull in the United Kingdom, is a world expert on euthanasia in the Netherlands and Belgium. He recently contributed an article to the JOurnal of Medical Ethics on one of the most worrying aspects of the euthanasia in Belgium—the deliberate shortening of lives of some patients without their explicit voluntary request. In this interview with BioEdge, he explains some of his concerns.
BioEdge: Are the figures of euthanasia cases rising?
Raphael Cohen-Almagor: Studies have shown a constant increase in registered euthanasia cases, predominantly in the Flemish (the Dutch-Flemish speaking part) of Belgium. Approximately one of seven terminally ill patients dying at home under the care of a general practitioner (GP) expresses a euthanasia request in the last phase of life. The annual figures are constantly rising: 235 in 2003; 495 in 2007; 704 in 2008, and 1,133 in 2011. In 2012, there were 1,432 cases and in 2013, 1,807 euthanasia cases were reported.
Are you sure about the statistics? The trends are confusing. You observe that in 2007 the use of life-ending drugs with the intention to shorten life and without explicit request occurred in 1.8% of deaths but in 2013 it was 1.7% of deaths. So contrary to what you have said, the situation seems to be improving, not getting worse, isn’t it?
Research has shown that in 2007 the use of life-ending drugs with the intention to shorten life and without explicit request occurred in 1.8% of deaths and that in 2013 it was 1.7% of deaths. This is a slight improvement.
However, the overall situation is worrying. The enactment of the Euthanasia Act in 2002 was followed by an increase in almost all types of medical end-of-life practices: euthanasia, intensified alleviation of pain, withholding or withdrawing life-prolonging treatment, and continuous and deep sedation until death. The latter practice is especially worrying: In 2007, 14.5% of all deaths in Flanders were the result of continuous deep sedation until death. This is a significant increase compared to the number of cases, 8.2%, six years earlier.
When the Euthanasia Act was legislated, it was designated mainly for competent adults, capable and conscious at the time of their euthanasia request. Evidence has shown that now euthanasia has been stretched to incompetent patients, demented patients, psychiatric patients as well as to patients who are said to be “tired of life”.
Furthermore, in February 2014, the Belgian parliament voted to extend the euthanasia law to cover children under the age of 18. The law sanctions euthanasia for children with terminal or incurable conditions who are near death, suffering “constant and unbearable pain”, and whose parents and health professionals agree with the decision.
Thus the scope of end-of-life practices has been enlarged far beyond the good intentions of the legislature in 2002.
How do doctors justify involuntary euthanasia? On the basis of relieving suffering? Of saving money? Of sparing the feelings of relatives?
I have raised the question of economic considerations in the decision-making process time and again with Belgian experts. I was repeatedly told that saving money is never the issue. Research indicates that beneficence is often the guiding principle. Physicians wish to ease patients’ suffering and to ensure a relatively comfortable death.
Worryingly, sometimes they give priority to the best interests of the patient’s relatives over and above the patient’s best interest, wishing to alleviate the patient’s “burden” off the shoulders of the next of kin.
You say that “social and peer pressure makes it difficult for those who oppose euthanasia to uphold their position in the liberal culture that has been developing”. Does this mean that it is hard to work as a doctor or nurse in Belgium unless you support euthanasia?
In 2004 I published my book Euthanasia in the Netherlands: The Policy and Practice of Mercy Killing in which I asked Dutch scholars about “culture of death” in their country. My research in Belgium indicates some striking similarities.
As is the case in The Netherlands, the general atmosphere in Belgium is supportive of euthanasia. The Netherlands and Belgium are liberal societies, with strong emphasis on autonomy. The majority of people in both countries support the idea that patients should be able to decide the time of their death with the help and support of the medical profession.
Many people in many countries, myself included, support this idea. However, I do not think that the Dutch and Belgian public are fully aware of the whole picture in implementing the euthanasia policy, and of the many problematic aspects of the euthanasia practice in their respective countries.
In both countries, the establishment view is pro-euthanasia, and one might be harmed if one takes a contrary view. There is pressure on medical professionals to support euthanasia. In both countries, those who are opposed to euthanasia are tagged and dismissed as “religious fundamentalists” who fail to speak truth to reason.
Some Dutch and Belgian scholars and journalists struggle with my critique of the policy and practice of euthanasia as they cannot tag me as a “Catholic fundamentalist” and because I initially supported euthanasia on moral grounds and changed my mind on practical, policy grounds, restricting my plea to physician-assisted suicide. I changed my mind because of the abuse that is recorded in both countries. A fine line distinguishes between moral reasoning and policy making. I am unable to adhere to abstract moral reasoning while ignoring facts.
To illustrate the societal pressure on those who object to euthanasia let us consider the following example: Carol is an accomplished medical ethicist. She is opposed to euthanasia. In her university there is an opening for the chair in medical ethics. She submits an application. Her chances to be nominated are slim to none because thecChair serves as a consultant in euthanasia cases referred to her by hospitals affiliated with the respective university. If it is known that the professor objects to euthanasia, then there would be no point in consulting with her on this issue at a time when euthanasia does take place in hospitals.
Hence, it is necessary to fill important posts with like-minded people who will maintain the positive climate towards euthanasia. The only exceptions are Catholic universities.
Do Belgians realize that involuntary euthanasia is common in their country? How about the medical profession and the police?
Many Belgian and Dutch scholars and professionals who have reservations about the policy and practice of euthanasia voice their frustration in trying to raise questions, air doubts, and open debates about recorded problems.
The media on the whole are not interested. I recently granted a long interview to a Belgian daily newspaper and, as far as I know, not a word was published. The criticisms are voiced mainly outside Belgium and The Netherlands. These criticisms are dismissed by advocates of euthanasia because “foreigners do not understand us” and, anyway, “the situation is probably worse in other countries”. In Belgium and in The Netherlands, so the claim goes, “we are conducting our affairs in the open, in a candid and transparent way while no data is available for other countries”.
I have heard these arguments again and again. In fact, the Belgian, like the Dutch, actually do not welcome criticism and are quite conservative in their liberal attitude to euthanasia. Both countries are protective of their systems and believe that their euthanasia policy is correct and just.
Curiously, some of the leading Belgian scholars on euthanasia publish only the facts without any interpretation or reflection. I am yet to hear a convincing argument for this so-called “neutral” approach. I say so-called “neutral” because silence is also a stand.
Belgian (and also Dutch) people pride themselves on their openness, on their ability to discuss and debate life-and-death decisions openly. In this same spirit, they should openly debate the more intricate and problematic aspects of the euthanasia policy while having adequate knowledge about the various end-of-life practices.
The full picture of the data should be disclosed to the public. Transparency is indeed of vital importance in promoting and safeguarding patient’s autonomy at the end-of-life.
Does Belgium offer lessons for other countries which are considering euthanasia or assisted suicide?
There are many lessons to be learned from Belgium, both positive and negative. Let me mention only some of them, and I start of the positive:
The practice of medicine should be deontological rather than utilitarian. Patient’s autonomy and preferences should be respected as much as possible. The Belgian medical system on the whole manifests that.
Belgian palliative care has been developing and continues to develop. This is a great positive in the Belgian medical system. The World Health Organization (WHO) defines palliative care as the “active, total care of patients whose disease is not responsive to curative treatment,” maintaining that control of pain, of other symptoms, and of psychological, social, and spiritual problems, is paramount. The medical staff must examine whether it is possible to prevent or to ease the pain by means of medication and palliative care.
Belgian scholars continue to conduct surveys about the euthanasia practice and produce consecutive reports, also in English. This is certainly a good practice. Other countries should also strive to compile extensive reports of their own end-of-life practices.
The practice of a truly independent second opinion to verify the patient’s diagnosis and his/her voluntary wishes is a good example to follow. The Belgian themselves are still challenged to implement this practice in full for all patients but they are constantly trying to improve.
The insistence that the final act should performed by physicians is correct. The Belgian medical establishment is struggling with this directive as well; sometimes the practice is conducted by nurses, but professionals are aware of the problem and trying to remedy this.
Much of the euthanasia practice of ending life in Belgium and in The Netherlands is dependent on general practitioners. Physicians are increasingly aware of the very powerful role their recommendations can play in people’s treatment choices, and of the undue ways their recommendations can influence patients. There is growing understanding of the importance of spending time with patients and having a candid conversation with them; getting patients to talk out loud about their values before making treatment recommendations. Quality care requires investing time and attention, opening and maintaining two-dual way physician-patient communication of listening and advising.
Physicians realise that often this type of conversation will make it easier for physicians to determine what recommendation is most appropriate for a patient and whether the patient is comfortable deciding what to do without receiving a recommendation.
The fact that physicians may not demand a special fee for the performance of euthanasia is appreciated.
Physicians should not be coerced into taking actions that conflict with their conscience. No coercion should be involved in the process. Conscientious objection should be respected.
On the negative side, the major lesson to learn from Belgium, and also The Netherlands, is not to legalize euthanasia. Despite the best intentions and the existing safeguards against abuse (which can be improved) both countries record too many instances of abuse.
The final act should be left in the hands of the patient, not in the hands of the physician. Unfortunately, some physicians are abusing the power given to them; they act paternalistically against the best interests of their patients.
About half of euthanasia cases are not reported. This lack of notification of euthanasia cases is worrying. Research reveals that physicians failed to notify the Federal Control and Evaluation Commission because they “had forgotten”; because they did not label cases that should be labelled euthanasia as such; because they found the procedural requirement of notification “burdensome and not useful”; because they felt euthanasia was a private matter, or because they failed to understand the legal requirements. More need to be done to study the differences between Flanders and Wallonia (Roman Catholic Walloon physicians find it more difficult than their Flemish colleagues to report euthanasia cases) and to clarify the logic of the Euthanasia Act to practitioners, explaining why the procedural requirements of the law are no less important than the substantive requirements.
Curiously, little is known about end-of-life practices in Wallonia. There is an urgent need to know how medical professionals in this region are conducting their affairs.
It is revealing that no physician has been charged for malpractice or abuse of power since the Euthanasia Act was introduced in 2002. The system is very protective of its physicians also when they act independently of the patient’s best interests.
Also worrying is the potential pressure on euthanized patients to donate their organs. The fact that euthanasia donors account for a very significant percentage of all lung donors should not go unnoticed.
Research has shown that there is a grey area in end-of-life care between treatments administered to relieve pain and suffering, and treatments aimed to shorten the life of the patient. Transparency and proper documentation are vital. They may serve as a safeguard against potential abuse. Records should be kept of the timing and doses of the drugs in use, and the physician’s intention at each step. Such documentation may reduce the use of inappropriate doses of medication given in the guise of relieving pain and suffering but actually intended to bring about the death of the patient. As a control mechanism, pharmacists should be required to file a report every time lethal medications are sold and records should be kept about their use.
Looking at the short history of the euthanasia laws, policy and practice, in Belgium and also in the Netherlands may lead us to think that there is something intoxicating about the practice that blinds the eyes of decision-makers, leading them to press forward further end-of-life practices without paying ample attention to caution.
In both countries, one cautionary barrier after the other are removed to allow greater scope for euthanasia. The logic of the 2002 Euthanasia Act that spoke of adults or emancipated minors was undermined in 2014 when the Belgians extended the law to all minors.
Although some patients are euthanized without explicit request (as mentioned, 1.7% of all deaths in 2013) the Belgians are not eager to push for more stringent control mechanisms. Quite the opposite: The scope of tolerance towards the practice of euthanasia is enlarged so that yesterday’s red light becomes obsolete today, and as this one is removed practitioners and law-makers are already debating a further step and other groups (patients who are “tired of life”, children, patients with dementia) to be included within the more liberal euthanasia policy.
This is quite astonishing as human lives are at stake. What is required is a careful study, accumulation of knowledge and data, addressing the above concerns, learning from mistakes and attempting to correct them before rushing like frenzy to introduce more liberal ways to euthanize patients. Haste makes waste.
Raphael Cohen-Almagor (DPhil., St. Catherine’s College, Oxford) is Professor and Chair in Politics at the University of Hull, UK. He was Assoc. Professor at the University of Haifa, Israel; Visiting Professor at UCLA and Johns Hopkins; Fellow, the Hastings Center and the Woodrow Wilson International Center for Scholars, USA; Visiting Scholar, Vrije Universiteit, The Netherlands. Raphael established the Medical Ethics Think-tank at the Van Leer Jerusalem Institute (1995-1998) and was among the drafters of Israel’s The Dying Patient Law (2005). Among his many books are The Right to Die with Dignity (2001), Euthanasia in the Netherlands (2004), Editor, Medical Ethics at the Dawn of the 21st Century (2000), Editor, Moral Dilemmas in Medicine (2002, Hebrew), and Confronting the Internet’s Dark Side: Moral and Social Responsibility on the Free Highway (2015). Raphael is now writing a book about end-of-life practices in different countries. Twitter: @almagor35. Web: http://www.hull.ac.uk/rca. Blog: http://almagor.blogspot.com
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