2013 Annual SOARS Lecture
Dying Assistance for the Elderly in The Netherlands – an historical and ideological analysis
Dr. Rob Jonquiere
Communications Director of the World Federation of Right to Die Societies,
retired Dutch physician, and former CEO of NVVE (the main right to die society in The Netherlands)
NVVE, the main right to die society in The Netherlands, has a membership of 130,000.
The World Federation of Right to Die Societies is a global organization of 52 right to die societies, including SOARS, in 26 countries.
The main points, made by Dr. Jonquiere were the following:
“When Huib Drion – a Professor of Law, and Vice-President of the Dutch Supreme Court – published his article ‘The self-willed end of life of old people’ in a major Dutch newspaper (NRC Handelsblad) in October 1991, he never could have imagined the impact his publication would have on the debate on end-of-life decisions in The Netherlands and abroad. It was the first time – as far as I know – that the emphasis was explicitly laid on the possible suffering of the elderly, in a period in which ‘euthanasia’ became more and more an issue of public attention and discussion in The Netherlands”.
In this article, Professor Drion had written “It seems to me beyond any doubt that many old people would find great peace of mind in the knowledge of having access to a way in which to say goodbye to life in an acceptable manner at the moment that this – in view of what life might have in store for them – seems appropriate to them”.
“Although pro-choice campaigners in The Netherlands, at the start of the public debate about assisted dying (in the 1960s), emphasized the right to self-determination to be the main foundation for having a ‘good death’ (in Greek, ‘euthanasia’), soon the attitudes and principles focused more on the issue of mercy and on the medical perspectives.
“That medical perspective was not only essential – since a doctor was nearly always involved – but it also provided lawyers and legislators ample opportunity to connect medical and judicial arguments in such a way that a law would have to fit both the judicial and the medical practices. We see in the debates leading towards the implementation of the Dutch law (‘The Termination of Life on Request and Assisted Suicide Act of 2002’) that even lay campaigners emphasized the role of doctors, as doctors had in the past fulfilled the secret (as it was illegal) duty to comply with the cries for help from suffering patients and assisted them to die in a humane way. It is thus not surprising that the main reasons to think and talk about (let alone to perform) euthanasia could be found when the somatic suffering became unbearable and hopeless so that doctors provided relief with appropriate medications.
“But, Professor Drion’s views on assisted dying and the broad public attention towards a right to die for everybody that considered their life no longer worth living caused some problems for pro-choice campaigners. Many doctors were not looking forward to assist in cases that did not fit within a medical domain. Politicians recognized immediately the importance that only a medical perspective would make legalization of assisted dying possible.
“Immediately after the triumph of finally having the law in place and assisted dying on request available for seriously-ill patients, the pro-euthanasia campaigners adapted their goals. The debate should now focus on three categories of people for whom a self-chosen end of life so far had in fact remained out of reach – demented human beings with an adequate advance directive; patients with a chronic psychiatric illness who had come to the end of meaningful treatment; and, elderly people who for a variety of reasons judged their lives completed.
“Now, it was decided to introduce the criterion of ‘irreversible loss of personal dignity’ in addition to the criterion of ‘ hopeless and unbearable suffering’ (the latter being a key factor in the 2002 Act). Research found that, for the elderly person, the loss of personal dignity is often a more important reason for the self-chosen end of life than unbearable suffering in the narrower sense. While for the doctor the suffering is central, for the elderly patient the loss of dignity is paramount. Here the problem is not so much physical, but social and emotional, with a severe loss of self-reliance and any direction over personal life.
“Another consideration being discussed now is the possible introduction of ‘counsellors in dying’. Starting end-of-life discussions, when severe suffering is caused only by illnesses, Dutch doctors occupy the central position with the present euthanasia law. When such suffering is no longer the only criterion, it is advisable that perhaps a new category of non-medical professionals could be entitled to give assistance – such as ‘counsellors in dying’.
“In our present Dutch euthanasia law, the person who wishes to end their life is really not in the strongest of positions. Of course, that person’s voluntary and well-considered request for assistance to die is important, but, in the end, it is the doctor who decides.
“Professor Drion always said (in spite of some contrary views by those opposed to him) that he thought doctors would have to be involved in the assisted suicide of elderly people because they own the key to the medicine cabinet, because only they – and no one else – are capable of determining the dosage and application of the medication needed, and, speaking from a Dutch point-of-view, the family doctor, who knows the elderly person well in our country, is the best positioned professional to assess the seriousness of the request and the (non) availability of alternatives.
“‘Completed life’ is not in all respects a satisfactory term. It can sound as if life is a manufactured product, detached from nature and the social environment. Other possible terms used are ‘tired of life’, ‘finished with life’, or ‘suffering from life’. Each of these terms has its drawbacks, but, in the end, ‘completed life’ has generally been chosen as the best to use, in these discussions, in The Netherlands.
“The conclusion that life is completed is reserved exclusively for the concerned elderly persons themselves. . Never for the state, society or any social system. Only the elderly themselves experience their own lives. They alone can reach the consideration whether or not the quality and value of their lives are diminished to such an extent that they prefer death over life. The reasons to do so are varied. Usually there is a combination of reasons that can lead them to the conclusion that their lives are now complete.
“The elderly have feelings of detachment and stillness. They experience a strong decline of involvement in life – life does not mean quite so much anymore. The elderly have feelings of isolation and loss of meaning. The elderly are tired of life – they are no longer able to do things that are meaningful to them. Their days are experienced as useless repetitions. The elderly become largely dependent on the help of others, they have no control over their personal situation and the direction of their own lives. The elderly struggle with physical, social and mental decay. The loss of functions and increasing physical problems cause feelings of degradation and shame. Loss of personal dignity appears in many instances to be the deciding factor for the conclusion that their lives are complete.
“The decision to end one’s own life is naturally very far-reaching. The ties to life are very strong. This makes deliberations between continuing a life which is felt as unliveable, and the ending of it, so difficult. However, when it becomes clear that in this life nothing substantial can be changed into liveable conditions any longer, the elderly person can reach the conclusion that this life has to be considered as completed. This elderly person then may prefer death over life and wish to die in dignity and peace.
“During the debates in our Parliament, at the beginning of this century, about the euthanasia law, the problem of a completed life was discussed, and the Government decided that the law should not apply to this situation. This was necessary then, because, without this exclusion, the law would never have obtained the required majority. However, in fact, there is nothing in the actual text of the 2002 Act which excludes dying assistance in situations of a completed life.
“Then, the 2004 report of the Dijkhuis Commission advised the Royal Dutch Medical Association (KNMG) that, in certain situations, euthanasia legislation could be appropriate for some elderly individuals. And, the KNMG has now decided that, as most elderly persons who say that their lives are now completed will have many minor, age-related ailments and problems, these may jointly constitute sufficient basis to call this a degree of suffering which can be considered as unbearable and hopeless, and so fulfil one of the most important criteria of the present law. This is now seen by a majority of Dutch doctors as an important step forward. And, the Regional Review Committees, supervising the implementation of the 2002 Act, have agreed that the necessary requirements of the euthanasia law are being met.
“The decision to end one’s own life requires courage and mental capacity. It is a decision that nobody takes easily. But, the availability of assistance with a dignified suicide is a great reassurance for many elderly individuals. Often, this reassurance, on its own, gives them the strength to continue living. In many ways, The Netherlands can be considered as a country that can be a guide to the world in this important subject, providing better and real choices at the end of somebody’s life.
“Regarding those with existing advanced dementia, who have adequate advance directives, the present Minister of Health, Edith Schippers, in close cooperation with the KNMG, has invited a group of experts to examine the subject, and to possibly produce a protocol for doctors to follow so that such assisted dying requests can become legal. The report of this expert group is expected in the coming months.
“In situations where patients fully meet the requirements of our euthanasia law, but where their doctors refuse to comply with their requests, the NVVE has established ‘Life End Clinics’ (SLK), with the hope that this arrangement will be temporary. These are not clinics in the literal sense of the word – they are a team of a doctor and a nurse who will visit the suffering patient at their home. The team will always try to involve the patient’s doctor and often they do eventually convince this doctor to perform the necessary euthanasia with the support of the SLK team. In the first year of this NVVE-sponsored programme (March 2012 to March 2013), 104 persons received euthanasia.
“In this lecture, I will also tell you about the work of a group known as Uit Vrije Wil (‘One’s Own Free Will’), which started a citizens’ initiative – for a ‘Completed Life’ – in 2010. It published a manifesto which advocated the legalization of dying assistance for the elderly, who considered their lives completed, by non-medical professionals. Within one week, this initiative received the required number of 40,000 declarations of support to put this subject on the Parliamentary agenda. And, when the citizens’ initiative was finally submitted to the Dutch Parliament, in May 2010, there were over 120,000 declarations of support, including a number of well-known individuals in our country – naturally, this matter received massive media attention. In time, this proposal will be discussed in our Parliament.
“One’s Own Free Will designed concrete proposals on how such assistance could be provided in its draft Bill called ‘Dying Assistance for the Elderly’ which included – The elderly person being assisted to die must have Dutch nationality or be a national of a European Union member state with a minimum two years as a resident of The Netherlands; two ‘counsellors in dying’, working closely together, must be convinced that the elderly individual’s desire to die is voluntary, well considered and that nobody (a relative or friend) is applying any pressure; the prescription for a lethal medication is only provided by a doctor; and each assisted death is reported to, and carefully reviewed by, a Regional Review Committee.
“In conclusion, I give you a final quote from Professor Huib Drion, stated in 1991 – ‘The realization to prevent (in the future) an unacceptable existence, will give many old people great peace of mind'”