Providing care and assistance for the terminally ill and the dying while respecting their wishes and their rights.
AS/Soc (1998) 19
7 September 1998
Social, Health and Family Affaires Committee
Rapporteur: Mrs Edeltraud Gatterer, Austria, EPP/CD.

Comments:

Introduction.

We agree that a human being is in her/his rights according to international documents on human rights. It guarantees everybody, without discrimination, respect for their integrity, rights and fundamental freedoms.
Discussions on the matter of life and death are often postponed because modern medicine seems to guarantee eternal life to everybody. That is, however, also one of the reasons why people often are kept alive against their will in the urge to provide all the achievements of modern medicine.

In all circumstances the human dignity is the basic assumption dealing with human beings especially in their final, vulnerable stage of life.

The assumption that most people die in hospital is fortunately not the case in the Netherlands. When cure is no longer possible, care has to be taken to patients in their vulnerable situation.

In the Netherlands palliative care and pain killing treatment are built in the health care system, available and accessible to anybody. Our health care system provides palliative and terminal care in hospitals, nursing homes and also at home.
Palliative care is a prerequisite in dealing with people (patients) in their end-of-life situation. But unfortunately palliative care may also prevent people from dying in a natural way, when they are kept alive against their will.
Nevertheless, sometimes progress in palliative and terminal care lags behind the expected state of art, many of the newest advancements have to be learned by and taught to all the workers in the public health service in an everlasting education.

Shortage and deficiencies in the public health care system endangers not only palliative care but also normal medical curative practice.

Specific Demands.

If we could accept that self-determination is the most important right to any human body the discussion about end-of life decisions should be more open and meaningful.
If a person expresses her/his will concerning life and death, who are we to restrict the ultimate wish of a fellow human being.
Unfortunately, legal systems do not take care of human beings who want that their futureless and meaningless suffering will be ended in a decent, human way. Even the best palliative care is not always able to prevent meaningless suffering in all cases!
In the discussion about this subject all opponents against the ending of life, on request and in free will, of a human being do forget that the other also has his rights.
It is amazing to read the title of this report: “the rights and wishes of the terminally ill and the dying are to be respected” and on the other hand all the arguments in which the rapporteur denies the ultimate right to end life on request by introducing all kinds of invalid arguments.
In Dutch ‘Euthanasia’ means: ending life on request by another then the person involved. In the law are listed the requirements of carefulness that have to be fulfilled. The arguments given are ruled out by these requirements.

A. To recognise and to protect a terminally ill or dying person’s right to comprehensive palliative care.

Of course it is the duty of Member States to provide cure and care to all its residents and to respect their right to self-determination according to the Convention for the Protection of Human Rights and the Dignity of the Human Being with Regard to the Application of Biology and Medicine.
It is deceptive to state that in Countries mentioned in article 34, people are killed by shortcomings of expertise of health care staff. On the contrary, the health care staff fulfilled the demands of the people involved.
In the Netherlands the procedures dealing with end-of-life and euthanasia are negotiated and fixed by the Ministry of Justice and the Royal Dutch Medical Association (KNMG) and adjusted by Case Law.
Of course palliative and terminal care has to be the standard, but should not become the panacea in order to deny the wishes of people who themselves decide otherwise.

B. To protect a terminally ill or dying person’s right to self-determination.

Medical intervention is allowed only after the person in question has been fully informed about her/his situation and the treatment perspectives in all circumstances.
A competent person may refuse treatment or may refuse further treatment when that treatment is meaningless in the person’s eyes.
In the Dutch “ Patient’s Law” (WGBO) all the factors on dealing with patients are settled. Especially the right to self-determination is basic and the physician in charge is not allowed to let his patient down. The physician has the duty to care for his patient even if cure is no longer possible and he has to fulfil all the needs of the persons that are put under his care.
A person in the last stage of life has the right to ask to terminate her/his meaningless suffering by a physician according to the Dutch Law (WGBO). In case the person concerned asks for euthanasia, the requirements of carefulness are laid down in the Burial Act.
Never, ever, economic reasons, pity, neglect or whatever ambivalent reasons may put pressure on persons to give up their rights for cure and care.
In our view it is unethical to keep fellow human beings alive against their ultimate wish, this contrary to the World Medical Association (WMA) declaration (1987, 1992). Even with proper palliative and terminal care the natural process of death may become inhuman. It is not the physician who decides about the suffering but it is only the patient, who is the centre of our concern, who feels the suffering.

The French Theologian and Philosopher Jacques Pohier states in his last, very important, book “La Mort Opportune” (Editions Seuil Paris, 1998): “Euthanasia is not the choice between life and death, but between two different ways of dying”.

C. To uphold the prohibition against intentionally taking life also with regard to terminally ill or dying persons.

Article 2 of the European Convention for Protection of Human Rights and Fundamental Freedoms states that ”everyone’s right to life shall be protected by law. No one shall be deprived of his life intentionally…..”.
This is the crux of the discussion on end-of-life matters. Of course no one is allowed to kill another person on purpose. Nevertheless, there can be situations in proper dealing with human beings in their final stage, that keeping a competent person alive against his/her will is unethical and against the state of art in medicine.
The majority in most of the countries in Europe are in favour of medical termination of life on request of competent fellow human beings in their final stage of life without any perspective of improvement of their medical situation.
In Europe the medical situation is different to that of other countries in the world. It is strange to put worldwide problems in the medical field in Europe to defend a rear guard action.
The council of Europe must take its responsibility and listen to the majority of the European Citizens.
Its Members have to provide all the means to guarantee the best medical cure and care to the European citizens and when the medical possibilities run out of proper cure and care they should allow the persons involved to have their life ended in dignity!

Hans Schraven
President Nederlandse Vereniging voor Vrijwillige Euthanasie (NVVE)

Aycke O. A. Smook MD
Surgeon-Oncologist
Board Member Nederlandse Vereniging voor Vrijwillige Euthanasie (NVVE)
Board Member and former President World Federation of Right to Die Societies (WFRtDS).

Jhr. Jean Roëll
Secretary European Division of the World Federation of Right to Die Societies ((ED)WFRtDS).