Hundreds of (young) people are enjoying the sun on the city beach outside the Amsterdam Rai Conference Hall Inside, 350 participants from 26 countries are listening to sessions about dignity in dying. These two are not so far apart as it might seem: organising member NVVE’s slogan has always been that a good life deserves a good death.

Day 1

‘Taboos don’t help, talking does’ says Dutch Minister of Health Edith Schippers at the beginning of the first conference day. Then Suzanne van de Vathorst, Professor in Quality in the Final Phase of Life and of Dying at the University of Amsterdam’s Faculty of Medicine, gives a bird’s-eye-view of the Dutch Termination of Life on Request and Assisted Suicide Act. The Dutch act is based on the right to assist in dying, contrary to other countries where acts are based on the right to die. Hence, the Dutch law stipulates criteria of due care by doctors.

Julie Besner
Julie Besner of the Canadian Ministry of Justice, informs the delegates about the latest draft of the law on medical assisted dying, ordered by the Canadian Supreme Court. A patient over 18 years of age should receive help in dying when he is of sound mind, and suffers from a terminal disease, his suffering unbearable and a natural death near is. How near is not elaborated. Physicians, nurses, pharmacists and all helpers involved in the process are exempt from criminal charges. Two independent people need to witness the signing of the advance directive and there is a delay of 15 days.

George Eighmey
One of the distinguished guests of Euthanasia2016 is George Eighmey, board member of the Death with Dignity National Centre In Oregon, US.. Former attorney and member of parliament, he contributed to the first Death with Dignity Act in the US, in Oregon. Similar acts have now entered into force in four more states. 77% of the American population supports these acts. Legislation should not be demanded too soon, Eighmey emphasises. It should be the result of careful strategy and preparation in order to gain enough acceptance. He keeps matrixes of demographical information, political climates, the basis in society, strength of grassroots movements and available funds. Eighmey and his colleagues are now campaigning for acts in New York, Maryland and Hawaii in 2018. If all goes well, Maine should have an act in 2017.

The End-of-life clinic
In the afternoon session director Steven Pleiter, physician Jenne Wielinga and psychiatrist Paulan Stärcke inform the public about the end of Life clinic in the Netherlands. Teams of doctors and nurses operate throughout the country, Wielinga is part of a team. He outlines the case of a 96-year old woman with Alzheimer’s, who asked in 2002 in her advance directive to receive euthanasia in case she would suffer from this disease and would not recognise her children. This had been the case for two years. But when the End-of-life clinic physician asked her what she would do if he would give her a deadly potion, she was adamant she would throw it away. The woman didn’t receive euthanasia as the protection of her life predominated her autonomy, preventing needless suffering and respecting her dignity.
Another patient did receive euthanasia; a relatively healthy 90-year old man suffering from lymph node cancer and Crohn’s disease expressed a strong wish to die. He had worked himself up from carpenter tot CEO of a big building firm. He was used to ask the most of himself and suffered unbearable. In his case his autonomy prevailed over the protection of life.
Psychiatrist Stärcke who has helped psychiatric patients addressing the clinic stresses the importance of informing family members of the euthanasia request. Especially when family members have become estranged. In many cases this can be achieved. After euthanasia has taken place, family members are offered aftercare.

Joachim Cohen
Medical sociologist Joachim Cohen of the Vrije Universiteit Brussels analysed results of European Value Studies (2008) on acceptance of euthanasia in relation to sociodemographic and cultural factors. Euthanasia is most accepted in Demark, Belgium, France, the Netherlands, Sweden and Luxemburg. Georgia, Turkey, Cyprus and Kosovo score the lowest. Acceptance in western European countries has risen almost constantly since 1981. Secularisation is part of the explanation.
There is a connection between religion and acceptation. Protestants are more tolerant than Catholics, who are more tolerant than the orthodox. And they are more tolerant than Muslims. But the stance of society and culture in a country is leading over religious stances.
Also the freedom regarding abortion and gay rights relate to the acceptance of euthanasia. The bigger this freedom, the bigger the acceptance of euthanasia.
Another relation was discovered between trust and acceptance of euthanasia. Trust in other people relates to a more positive outlook on euthanasia. Asunción Alvarez del Rio, director of the Mexican Right-to-die-organisation, later mentioned that physicians in Mexico City are against euthanasia because of the corruption in this country.

Day 2

Udo Schuklenk
Udo Schuklenk, Professor of Philosophy in Canada, criticises the draft of the Canadian law. The draft varies on essential points from the Supreme Court of Canada (SCC) verdict in the Carter case, on which new legislation should be based. In the verdict the criterion of being in the final stages of a terminal illness is not stipulated. In the draft it is. Schuklenk admitted to becoming an activist because of these ‘mind boggling’ changes to the verdict.

Peggy Pabst Battin
Peggy Pabst Battin from the US, also a philosopher, shared some surprising insights. What can the aid-in-dying movement learn from its opponents? She analysed the reason of organisations on patients’ rights, suicide prevention and religious groups.
The patient rights organisations, (as the American Not dead yet groups) have an internal, unconscious notion their life is worth less than other’s. This feeds their fear of a slippery slope, the fear of being lured into assisted dying. ‘It is hard to fight and enemy in the outposts of our mind, says Pabst Battin. Also dying patients who want to die have these unconscious notions: that they should live life to the end. The contribution of the patient rights groups to the thought of aid-in-dying groups is that they should be aware of this kind of social programming.
The analogy between suicide prevention and aid in dying groups is that in both cases there is a risk of somebody making a wrong decision. Suicide prevention groups have well developed skills and instruments (like cognitive behavioural therapy) to help people making up their mind, without blocking these choices. The aid-in-dying movement can take this into account.
In spite of the fierce opposition to euthanasia and aid in dying by religious groups like the catholic church, aid-in-dying groups can learn from them that death has a spiritual meaning. Not only for the person dying, but also for his family and society as a whole.

Judith Kennedy Schwarz
Judith Kennedy Schwarz, director of End of Life Choices New York (EOLCNY), was today’s first speaker in the medical program. physician assisted dying  is illegal in New York State. Kennedy Schwarz and her colleagues frequently give information on the available legal options in advancing death. One of these options is Voluntary Stopping with Eating and Drinking (VSED). But this is not always easy. The patient needs to be adamant, well informed and sound of mind. VSED requires support from family, caretakers and somebody with medical palliative knowledge who monitors the process. And much patience is required.

Jean-Luc Romero-Michel
Jean-Luc Romero-Michel, president of the French Association pour le Droit de Mourir dans la Dignité (ADMD) and  Deputy Mayor of the 12th arrondissement in Paris elaborated on why France still does not have a euthanasia act, while 94% of the French population would approve: When candidate in 2012, president François Hollande promised to advance legislation of euthanasia or assisted suicide. But one of his first visits as president was to a centre of palliative care. Moreover, an avid opponent of euthanasia and assisted dying was appointed as important government advisor.  
A jury of 18 civilians concluded in December 2013 that there is need for a law for help in dying. There is a new bill (Romero: ‘the third in ten years’) that only permits palliative care and terminal sedation, something that is already a possibility in France. ‘This law is wrong’. In September 2017 the French will vote a new president. ADMD France will lobby intensely to change the minds of representatives and candidates. ADMD will work closely together with grassroots movements and young people especially.

Willem van Oostvoorn
Touching personal stories filled in the afternoon sessions. Willem van Oostvoorn shared the joint euthanasia of his parents. For decades they had confirmed their living wills. They decided to ask both for euthanasia when the father fell ill and the mother had liver cancer, in 2014.They wanted to die as soon as possible ‘That’s when it went wrong’, said Van Oostvoorn. The general practitioner, de NVVE or the End of Life Clinic could not be so fast. They obtained deadly medicines, but couldn’t take these as the mother couldn’t drink anymore. In the end, another general practitioner could speed up the procedure. The two received euthanasia, after saying good-bye to their loved ones. ‘It was beautiful and couldn’t have gone better. Our parents died in piece said Van Oostvoorn.

Patricia Koster
The father of anthropologist Patricia Koster suffered from vascular dementia. In the winter of 2014 he started to become preoccupied with death. Her father asked her to write down his euthanasia request. Her mother could not understand his wishes,  
When her father called her one day to let her know ’it was his time’, Koster decided to change from child to his case defender. The turning point was established when an NVVE-consultant visited the family and made the mother realise she was in the way of the father’s wishes. ‘His dying was beautiful and I am impressed by the courage displayed by all involved’ Koster says.   

‘Weary of life’
‘Weary of life’ was an important topic in the science sessions. The meaning of the term differs. In the Netherlands the suffering is not connected to a chronic or incurable disease. Phil Cheatle, president of My Death, My Decision (MDMD), states that people can suffer from ‘a complete life’ when they are old, mentally competent and struggling with a chronic and incurable disease. They have also lost their purpose and constantly experience the feeling they’d rather be dead.
Cheatle says that ideally the quality of life is high and only declines towards the end of life. Often it is a swinging movement with ups-and-downs, where somebody lives through downs that are more minimal than expected. Life could be labelled as ‘completed’ when not only the person suffering from it but also professionals conclude there is no more hope.

Els van Wijngaarden from the University of Humanistic Studies in Utrecht, did qualitative research on ‘completed life’. She spoke to 25 elderly people about why they consider their lives ‘completed’ Then she identified five categories: loneliness, the pain of not mattering, a growing inability to express one’s identity, tiredness and a sense of aversion against feared dependence.
Also Marije de Groot, researcher in Anthropology at the University of Amsterdam, spoke to 50 people who considered their live completed. Most of them said they were ‘finished with life’ Other elements, less mentioned were fear of decline, pain and trauma and depression.

Day 3

Robert Pool
Robert Pool, Professor in Social Sciences and Global Health at the Vrije Universiteit of Amsterdam, examined the paradoxes in the concept of euthanasia in the Netherlands. It seems the highest form of autonomy and self-determination of the individual patient, but that isn’t true. It is not an individual act, but a communal one, and it’s the most regulated form of dying. This is because the Dutch euthanasia law finds its origins in ‘mercifulness’: before the law doctors gave dying patients a last push out of mercy. Only in the last years the concept of autonomy has entered the debate. In reality, the apparent freedom of choice is limited by the monopoly of the doctor (and the state). There is a ‘regime of truth’ in euthanasia: thìs is the truth and if somebody wants to die without meeting the criteria of the law, people expect they want this because of depression or loneliness.
Nonetheless, people justify their choice of an externally controlled and facilitated form of dying as their autonomy, even when their request for euthanasia has been declined. Pool concludes that the legalization of euthanasia in The Netherlands is not the result of liberalism and tolerance, but is an expansion of the ‘bio-power’: the power of the state over the citizens bodies

Manya Hendriks
Manya Hendriks, PhD-candidate at the University of Zürich, conducted a literature review on autonomy and end of life decisions. She lays out the dichotomy between unconstrained versus shared decisions-making and of liberal versus relational autonomy. Liberal autonomy entails the right of the patient and the rejection of medical paternalism. Relational autonomy is about the relationship between people as doctors and patients. The focus in two thirds of the articles she examined was on liberal autonomy. In one third it was on relational autonomy.

Marianne Snijdewind
Marianne Snijdewind (PhD candidate Vrije Universiteit Amsterdam) interviewed doctors and other experts on the developments after the legalisation of euthanasia in The Netherlands. She found that the general public has more liberal opinions than doctors, especially when it comes to euthanasia for psychiatric patients, people weary of life or patients with dementia. The reaction of one doctor was typically: ‘I don’t see any role for myself in these cases’. She also found that doctors perceive the boundaries of the law as ‘stretched’, while experts conclude they have been ‘clarified’. Doctors note patients have become more demanding. Experts find this a general trend in society.

Gerrit Kimsma
GP and philosopher at Radboud Universiteit, Gerrit Kimsma, examined argumentations for and against euthanasia. He divides them in three categories: one about rights and duties, one about the consequences and one about effects on patient-doctor relationships and health care in general. The conclusion is that opponents of euthanasia keep using the same arguments in spite of demonstrated incorrectness. Fears have not become reality, especially not the ‘slippery slope’ argument. Positive results of the law that were expected have come true but pose new ethical dilemmas.

Ton Vink
‘What is a good death’ asks philosopher and end-of-life counsellor Ton Vink. He thinks that a person should carefully balance the pros and cons, have a major role in the proceedings, make sure the death is carefully executed and the person should not suffer more. It should preferably not take place in forced loneliness, but in the company of family or friends who accept the situation.
Vink cornered the term self-euthanasia, where a person ends his own life. The concept of euthanasia in the Netherlands entails actions of a doctor. Why should you ask another person to end your life when you can do it yourself, for instance by opening a drip.

Over de NVVE

De NVVE is er voor iedereen die waardig wil sterven. Wij willen een optimale uitvoering van de euthanasiewet, vooral voor groepen die in de praktijk geen hulp krijgen, zoals mensen met dementie, chronisch psychiatrische patiënten en ouderen die vinden dat hun leven voltooid is.

Het Adviescentrum van de NVVE staat altijd voor zijn leden klaar. Wij zijn op werkdagen tijdens kantooruren bereikbaar voor al uw vragen over het (naderend) levenseinde.

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