2014 Annual SOARS Lecture
The Belgian Model of Integral End-of-Life Care
Professor Jan Bernheim
Emeritus Professor at the Vrije University in Brussels
Professor Jan Bernheim is a medical oncologist, who has been at the forefront of the development of the palliative care movement and voluntary euthanasia in Belgium for many years. The main points made in his talk were:
“Voluntary euthanasia (terminating the life of another person, at that person’s request) is one more step in the control of people over their existence.
“Although in most advanced countries where public opinion has been surveyed, vast majorities favour (voluntary) euthanasia, influential professionals and politicians have so far often resisted it. Motives invoked to oppose euthanasia include the preservation at all costs of all forms of human life, and fears that legalized (voluntary) euthanasia would entail slippery slope effects, erode confidence in medical practitioners and be used instead of palliative care.
“Palliative care is another endeavour to increase human control over dying. But, it can sometimes be more than that. An explicit motive of Dame Cicely Saunders when she initiated palliative care in the UK, in the 1950s, was the prevention and dissuasion of voluntary euthanasia. Yet, palliative care and (voluntary) euthanasia share several fundamental ethical values, including beneficence to the patient, respect of patient autonomy, and an aversion to medically futile treatment. Nevertheless, elsewhere than in the Benelux countries, palliative care and legal (voluntary) euthanasia are usually widely viewed as antagonistic societal developments and adversary political causes.
“Since 2002, in the Netherlands and Belgium, and 2009 in Luxembourg, (voluntary) euthanasia has become legal when requested by a competent and well-informed, irreversibly suffering, adult, performed carefully by a doctor after consultation with at least one other competent physician and reported to a Control and Evaluation Commission. And, earlier this year, in Belgium, requests for euthanasia from irreversibly suffering adolescents, judged to be capable of deciding on the way they would like to die, were also made legally acceptable.
“Whilst in the Netherlands, the palliative care and the (voluntary) euthanasia movements were quite separated in personnel and time (legalized euthanasia preceding the development of palliative care), they largely went hand-in-hand in Belgium – both had wide public and multi-partisan support. The first palliative care initiatives came from advocates of (voluntary) euthanasia at the Free University of Brussels, where also contraception, abortion and assisted procreation had been pioneered. What they propagated was patient-orientated ‘Integral End-of-Life Care’, consisting of conventional palliative care and/or (voluntary) euthanasia, according to the patient’s informed wishes.
“Many of the Belgian founders of palliative care deemed (voluntary) euthanasia unethical if it was conducted for lack of adequate palliative care services – they supported euthanasia as a means of offering patients real choices.
“Within Europe, Belgium was second only to the UK in palliative care development, when it legalized (voluntary) euthanasia in 2002, and since then, its palliative care budget has consistently increased by an annual 10%.
“The euthanasia bill was enacted by Parliament, in 2002, by 86 votes in favour, 44 opposed and 12 abstentions, together with a bill on patient rights, and one expanding the reach of palliative care nationwide, doubling its funding and integrating palliative care with national health insurance. Though voting was not quite along party lines, the large majority was made possible by the fact that, for the first time in decades, the Christian Democrats were in opposition. The palliative care and patient rights bills were almost unanimously adopted.
“In Belgium, physicians trained in palliative care tend to practice (voluntary) euthanasia more than their untrained colleagues. Interestingly, spiritual care is found more intensive in cases of (voluntary) euthanasia than in conventional dying.
“I believe that patients who are assured of (voluntary) euthanasia – if and when they judge the time has come – tend to live longer than their counterparts dying conventionally. I think that there are three main reasons for this. Firstly, euthanasia usually only has a modest impact on lifespan (the estimated hastening of death, in 55% of patients who die by euthanasia, is less than one week). Secondly, the possibility of a ‘good death’ seems to confer psychological advantages such as reduced anxiety, more attention to spiritual accomplishment, and more concentration on quality of life – all of which may promote hanging on to ‘life’. And, thirdly, treatment acceptance and compliance may be increased – some patients agree to possible life-prolonging treatment only on condition that, if non-tolerated adverse effects should occur, they will be granted euthanasia.
“Although the incidence of patients in Belgium receiving non-voluntary euthanasia, since 2002, has halved, this practice still unfortunately continues – although this is now essentially limited to unconscious, dying patients, many of whom have previously requested euthanasia. And, today, Belgian physicians naturally use the “double-effect procedure” far less than elsewhere.
“The main condition for (voluntary) euthanasia is ‘unbearable suffering’ – suffering that can no longer be tolerated by a patient.
“About two percent of Belgians die with (voluntary) euthanasia – at least half of them after following a conventional palliative care pathway. And, about half of all euthanasia deaths are performed by GPs in a patient’s home.
“Less than 0.1 percent die by physician-assisted suicide (where the patient ingests a drug provided by the doctor) – although many physicians state that they would ideally prefer this because then the autonomy of the patient is thus more obvious. It seems that many patients have more trust in their physician doing it right than in themselves.
“At least half of all requests for euthanasia are effectively carried out. Only five percent are refused – usually, because the legal conditions are not met. About ten percent of requests are withdrawn. But, in a quarter of all cases, the patient died before euthanasia could be performed, which suggests belated requests, and possibly procedural delays.
“Belgium is also the first country where, under strict conditions, patients with irreversible neurological conditions, whose request for euthanasia has been granted, can also give added meaning to their life and death by donating their intact organs for transplantation.
“Unlike in the Netherlands, citzenship is not a legal requirement for euthanasia in Belgium, but euthanasia is conditional upon a profound patient-doctor relationship. Therefore, there is no evidence of ‘euthanasia tourism’.
“Guidelines by medical and palliative care organizations, including the Federation Palliative Care Flanders, the Medical Disciplinary Board and the Flemish General Practice Scientific Association have endorsed this concept of ‘Integral Palliative Care’ (that is, conventional palliative care including voluntary euthanasia).
“In practice, among end-of-life caregivers and palliative care units, just like among patients, there is a pluralism ranging from full acceptance to total avoidance of euthanasia, and these personal attitudes are respected.
“Euthanasia is, above all, a choice by a competent and well-informed patient – and, not a decision by the physician. So that all the doctor has to do is decide for himself or herself whether to participate – that is, to be instrumentally and actively involved in the process.
“This integral end-of-life care has not eroded the confidence of Belgians in their health care system: on the contrary, while confidence was 87% in 1999, it rose to 91% in 2008 – the second highest after Iceland of all countries studied in the Europeans Value Survey.
“Yet, some problems persist. For example, some Catholic healthcare institutions still exert pressure on their staff to abstain from euthanasia. And, though the reporting rate of (voluntary) euthanasia steadily increases, too many cases still remain unreported, especially in the French-speaking half of Belgium. However, it must be remembered that, before the present law, there was no control at all. Illegal clandestine end-of-life practices, performed without peer control, as happened in the past, are much more worrying than even imperfectly regulated legal euthanasia. Now, it can be argued that the openness of end-of-life practices, especially under the scrutiny of medical colleagues who are conscientious objectors, is perhaps the best control.
“For those physicians who are still inexperienced with (voluntary) euthanasia, guidance and assistance can now be provided by colleagues of the Life End Information Forum – for both the legally required second-opinion consultation by an independent physician and also for technical advice.
“Irreversible, intolerable suffering is also the justification for (voluntary) euthanasia for some elderly patients with a number of chronic incurable ailments who, with the additional loss of dignity and independence, have reached the stage of a completed life.
“The drive for legislation of (voluntary) euthanasia enhanced the development of palliative care in Belgium: and, at the same time, a well-developed palliative care system made the legalization of (voluntary) euthanasia generally more acceptable. Voluntary euthanasia can be an integral part of palliative care. Recent epidemiological studies have shown no ‘slippery slope’ effects of legalized (voluntary) euthanasia, and the carefulness of end-of-life decisions has increased.
“The Belgian experience deserves to be brought to the attention of other countries debating end-of-life issues. The principles underlying the Belgian model of integral end-of-life care are individual citizen self-determination, physician accountability, and respect for the religious and philosophical life stances of patients and caregivers. The Belgian model is evolving (and many other important issues are the subject of ongoing professional, societal, and political debate). This is the hallmark of Belgian society, whose culture and politics has always required a high degree of tolerance and compromise. Although a predominantly Roman Catholic country, there is a tradition of liberalism and secular humanism manifest at all levels of society.
“It can be argued that both beneficence and respect for autonomy are manifestations of the virtue of compassion, especially understood as the ability to put oneself in another person’s place. In other words, compassion encompasses respect for autonomy. Notwithstanding that autonomy is in high regard all over the spectrum of life choices in Belgium, I think that the emergent and main motive for developing the Belgian model was compassion”.