Relevant

Magazine of Right to Die-NL (NVVE)

Volume 37, nr. 3, August 2011

Summaries by Corry den Ouden-Smit

Petra de Jong and the opportunities for a life’s end clinic.

A TEMPORARY SOLUTION AS LONG AS PEOPLE ARE LEFT IN THE COLD

The coming of a life’s end clinic is a question of time. NVVE-CEO Petra de Jong replies to criticism. What was said? And has been done so far.

By Anja Krabben

Many reactions in the papers as well as on radio and television came to her message that this clinic was getting the green light. She thinks it will become a happy clinic, because people will be happy if they can choose a way of dying suitable for them, an escape from the Via Dolorosa.

Rejecting reactions came from the Christian political parties but also from the KNMG, the physician’s professional association. Their spokesman Lode Wigersma has said that ‘a death clinic’ testifies of a tunnel vision. The important thing is to give good care to those who are wishing to die.

Also the KWF, association for struggle against cancer, was against. A spokesman said that a request for euthanasia is seldom refused to cancer patients. But Petra could prove this was not true. From her attainability study it became clear that many terminal ill cancer patients do get ‘NO’ on their request, and the refusing physician does not refer to a willing physician.

Resistance

Edith Schippers, minister of Public Health did react loud and clear, in a letter to the Second Chamber in February: there are no legal objections for such a clinic. Of course the legal rules for due care should be followed.

Two criticisms have been emphasized: a specific location to which one should go to die and the three days for the intake. A specific location would make euthanasia easy because physicians who have objections could leave it to the clinic. And three days for intake should be far too short to build up a relationship with the person.

Screening

Petra de Jong is diligent in answering and explaining. Of course the process takes longer. The process involves a screening procedure. The physician involved in the screening is the same as the physician who assists in the end of life.

De Jong sees a difference in reactions expressed in the press and in reactions to her in person. Physicians and nursing staff are positive. ‘After a presentation a physician came to me. He opposes to euthanasia and could assist patients who wished to die by offering palliative care. In two cases he could not give the expected relieve and would have been glad if he would have had the opportunity to refer to a clinic.

Petra de Jong thinks the negative reactions will become more severe if a building will function as life’s end clinic. She is prepared for demonstrations of enraged and praying people.

A building for life’s end will come, but the screening will be done ambulant. ‘The physicians of the clinic will live scattered over the country. They will visit persons in their region and once in several weeks they will go to the clinic to help them there to die, if they got the green light.

The patient may be taken in, only after he has received the green light

Some people may choose to end their life in their own environment, but that is not always feasible, because they live in a psychiatric hospital, or in a nursing home, or the home situation is not suitable.’

Govert den Hartogh, professor in ethics, is afraid that people can’t reconsider once they are in. There is a psychological barrier. Will the decision still be voluntarily? De Jong: ‘if, after all, a patient wants to withdraw, he certainly can. But then something during the screening has gone rather wrong. The physician in charge has to answer for it, because it is his professionalism to check the voluntary of the request.’

The opening of the clinic is foreseen in the year 2012. Physicians and managers have applied, building locations have been offered. A foundation to this end has been set up. ‘The NVVE will not run the clinic but will facilitate. After all it has been our initiative’ says De Jong ‘and someone of the NVVE-board will participate in the board of the clinic to ensure that the NVVE point of view remains upright.’

Grants

One of the first things is to gather a starting capital. ’The money will come from our members and by asking for grants. When the clinic is operational it has to make their ends meet’

Among the physicians who applied spontaneously to work in the clinic there are general practitioners, medical specialists and nursing home physicians.

De Jong: ‘The physicians will have to work in part time. There have to be five to seven. And indeed, their names will be public. They don’t do anything illegal’

‘We are looking for a location of the domicile. There have been various offers. The most difficult thing will be to get a licence to run such a clinic.’

Criteria

It does not help that the KNNG rejects the initiative by calling it a ‘death clinic.’ They say it is better to school physicians. To show physicians hat more is legally possible than most of them know, and that, if a physician does not want to perform euthanasia, which is his good right, he should refer to another physician.

De Jong: ‘That may be so, but in the mean time there are many patients left in the cold, patients who fulfil the criteria for euthanasia. As for now a life’s end clinic supplies a want. The clinic will be a temporary solution. When all physicians do as they should, euthanasia concerning, the clinic will be revoked.’


Good euthanasia belongs to a good hospice

A CLEAR CHOICE FOR THE DEATH

In the hospice where the father of Inge Klijn in 2001 died the volunteers had problems with the possibility of euthanasia. A conversation with his physician ten years later.

By Inge Klijn

Ten years ago my father died with help of his own physician in a hospice. The notion of euthanasia was sensitive, not with the nurses but with the volunteers. So we were asked not to talk about it.

Sensitive

I go to visit Gert Roos, the physician of my father and one of the founders of the hospice. I ask if my memory is right that the self chosen death of my father had been such a shock? ‘Yes, it was a shock: that it had been done three month after the opening of the hospice and by me, a physician they had not thought of doing such a thing.’

Gert Roos knows a lot about pain relieve and palliative care. Good care was seen as an alternative to euthanasia. The line of thought, especially among volunteers, was that if the care is good enough there is no need for euthanasia.

Summer 2001. My father is very ill. He has cancer and has a lot pain. His suffering will grow worse. A month before his death he changes from physician. He chooses Gert Roos, who is an expert in controlling pain. Besides he lives on the corner and my father is a practical person.

In the first get-acquainted interview my father does not refer to a euthanasia wish, although the subject had passed. In the first place he wants a physician who knows what he is doing.

The following weeks my father’s health deteriorates. He can’t leave his bed and he needs more care than I can give. He does not want people from the home care in his house. The situation becomes difficult. He tells his physician that he is lonesome. In the hospice a room becomes vacant. It is a blessing, because at home we could not give him sufficient care. Although the thought is disturbing, that he only could be admitted because his death is near.

In the hospice my father revives. He has a room with a view. The volunteers make his favourite meals. His appetite returns and he enjoys the attention. But after a week the cancer suffering has the upper hand. He can’t do things on his own he is dependant and even has to be cleaned. It is awful to him. He says ‘this is not a life’ and tells me that he talked about euthanasia with his physician. I am not surprised. In fact I had expected it a long time. He is a person who wants to have grip on his life. That he wants the stage-management over his death is logical.

Playing the piano

It is difficult for the physician to weigh my father’s death wish. ‘You have to know your patient well. If he screams of pain and you can’t relieve, the decision is easy. But if he does not want to loose his autonomy, like your father, I have to know him better.’

I asked ‘what is wrong with the wish of a dying person to die premature?’ Roos: ‘The request for euthanasia can be made out of fear for death. The person can panic. And it can be very valuable to take time to say goodbye.’

He tells about a case of euthanasia. It came true there was a lot of unfinished business in the family. Afterwards he had a bad feeling about it. So he now acts even more thoroughly: he calls the former physician of my father, he talks with the family and visits my father twice that week. It becomes clear that being dependent is very hard to him and a self willed death is all right. The eye-opener came when my father asked ‘Gert, what have you done this morning’ and the physician answered ‘I started the day with playing the piano, after that I had my consultations.’ ‘And what are you going to do this evening?’ ‘I will go to a meeting.’ ‘So your life is a challenge. My life is boredom. All day I lay in my bed, are being washed and that’s it. A life without challenge is no life to me.’ Now Roos is convinced and he starts the euthanasia procedure.

A week later, September 10, 2011, is the day. We are present at the euthanasia. It feels good. We are sad but also relieved.

Grief

Later on the hospice organises information evenings about euthanasia for volunteers. In the mean time they had heard about the euthanasia of my father. They are in distress. ‘How can it be a person chooses for euthanasia if he is taken care for? Didn’t we give him enough care and attention? Roos tells that tender and loving care can’t prevent a euthanasia request. Pain and bodily inconveniences are not the only reasons to ask for euthanasia. Not being able to live on your own, to lose your autonomy and to be utterly dependent can be unbearable suffering. By giving good care in a hospice, also good euthanasia can be given. Because everything has been done to relieve pain and grief a choice for euthanasia is pure.

Ten years ago my father’s death has brought quite a lot of commotion in the hospice. After a while the taboo on euthanasia was gone, like in most hospices; eighty percent allows euthanasia nowadays.

AGAIN SUBSTANTIAL INCREASE IN THE NUMBER OF NVVE MEMBERS

In two and a half years the number of NVVE members has risen from 105.000 to 120.000. The NVVE is becoming more and more important; many a person sees the necessity of writing their will about life’s end. The NVVE has campaigned on important issues on radio and television: the importance of a will about life’s end, the left behind groups like chronic psychiatric patients, demented people and the ones who find their life has been fulfilled and the feasibility of a clinic for life’s end. The NVVE stays brimful in the spotlights.

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