Reports of meetings

London FATE-SOARS Meeting - 20 September 2013

At the start of this well-attended meeting, Peter Warren gave a updated report on the progress of Margo MacDonald's Bill - please see full details in the next Newsletter.  It was important to hear him because anyone in the UK will be able to contact MSPs next year giving their personal views on this important Bill.

The main talk was given by Dr. Rob Jonquiere, who is a former CEO of NVVE (the main right-to-die society in The Netherlands, which has a membership of 130,000 individuals): now, he is the Communications Director of the World Federation of Right-to-Die Societies (an organization of 52 right-to-die societies, including FATE and SOARS, in 26 countries).

The main points, made by Dr.Jonquiere, in his lecture on "Dying Assistance for the Elderly in The Netherlands - an historical and ideological analysis", 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 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".

In the debates leading towards the implementation of the Dutch law ("The Termination of Life on Request and Assisted Suicide Act of 2002"), lay campaigners emphasized the role of doctors. 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.  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) availabilty 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 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.

The Royal Dutch Medical Association (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.

(A longer summary of Rob Jonquiere's talk can be seen on the SOARS website)