“That’s not Dad, that’s the Alzheimer’s speaking” by Evelien van Veen (de Volkskrant 18/05/2018)

And what about his father saying: life does not bother me as such? Luc shakes his head. “That’s not Dad, that’s the Alzheimer’s speaking.”

Advertisements

For many years, Jacques Beemsterboer was convinced: when things are no longer going well, there is still euthanasia. But things are turning out differently

(My translation (TL), with suggestions Ray De Vries, of an article in de Volkskrant, original in Dutch available here)

It is March 9, 2018, and Luc Beemsterboer (52) enters the nursing home where his father has been living for three days. He walks through the long hallway and types in the access code for the glass sliding doors, just when his dad arrives behind the door.  A little man, a bit stooped by old age, neat jacket suit. When he sees his son, he momentarily pretends to run past him, a teasing twinkle in his eyes.

“How are you doing, Dad?”, asks Luc, when the tall and the short man stand head to head.

“Shitty”, is the answer – with a tone of: what did you expect?

Jacques Beemsterboer (80) is not in a nursing home because he really wanted it badly. He would by far have preferred to stay with his Toos, his wife of  55 years, in their new flat in the center of Papendrecht. But it did not work anymore. Jacques has Alzheimer’s; he is confused; at home he ran around at night like a ghost, keeping Toos busy with him at the most impossible times. Sometimes, he realizes that he has dementia. “It enters your life insidiously,” he says when you ask him about it. “I can still participate quite well in conversations about nearly anything, but will I still know about it in fourteen days? That’s another question.”

His room in the nursing home is still a bit bare: a bed, a cupboard, a table with two chairs. The photo album that lays on the table shows the Beemsterboer family during birthdays and barbecues; with two sons, two daughters, grandchildren, great-grandchildren and a lot of other folks, it was regularly full-house. When you say: “A nice bunch, Mr Beemsterboer”, he answers dryly: “I did my best.”

A man with a sense of humor, his whole life shopkeeper, owner of two drug stores in Rotterdam. A lover of sports; he cycled, finished the Four-Day Nijmegen March with ease, and even managed to run four marathons. “Running is still nice”, he says, “but things that I used to be able to do, like running the marathon, I can’t do anymore. I would still like to do it, but you have to be realistic, I cannot handle that anymore. Cycling of course, but not as much anymore. You have to do everything more modestly, you get used to that after a while.” Looking a little uncertain at his son Luc: ‘Can you still agree with all the things I’m saying?’

“Well, Dad, you completely stopped cycling,” says Luc. Jacques nods a little, he seems suddenly lost in thought. When his wife Toos is mentioned, he cries briefly and silently. Yes, it is very difficult for him to spend his days without her now. She will come to visit this afternoon, says Luc when he is about to leave, together with daughter Marlies. Jacques’ eyes twinkle again. With gallows humour: “Oh, that one too? What a tough day I have.” It was never the intent to put his father is in a nursing home, says Luc Beemsterboer earlier in the day in his mother’s new flat in the city centre of Papendrecht. Toos (79) serves coffee; daughter Marlies (48) is also present. Jacques had wanted to step out of life on time, all three agreed. The fact that this did not happen, says Toos, is because ‘in the Netherlands a handful of important men apparently decide about life and death.’

Statements

Jacques Beemsterboer is diagnosed with Alzheimer’s disease in 2013. By then, he is getting more and more forgetful, for several years already; the diagnosis hardly comes as a surprise to him and Toos. He also realizes that he will continue to decline, but he does not want to let that happen. He makes an appointment with a euthanasia consultant. He then signs a living will in which he indicates that he wants euthanasia if there is unbearable and hopeless suffering and his life is ‘no longer human’. From then on, he continues to sign such a statement every six months; his GP keeps them in his file.

In the Alzheimer cafés that Jacques and Toos visit almost monthly, Jacques gives regular lectures about his decision to want euthanasia when life no longer makes any sense to him. But we’re not there yet in those early years: he is member of a walking club, enjoys his vegetable garden, he loves his children and grandchildren and – even though he forgets the facts more and more quickly – he still follows the news every night.  But in November 2017, it has been enough, Toos continues her story. Jacques has deteriorated rapidly in recent months. His short-term memory is a tragedy, Toos has to help him with washing and dressing, and leads him back to bed with a gentle hand when he suddenly gets up at night. The names of his grandchildren are a mystery to him and when he comes across his mirror image, he sometimes says in surprise: “Someone is walking there.” Two days a week, Jacques goes to a care farm to give some relief to Toos. And although he always enters the van without protest, he admits that “it’s no longer worth it for me.

Toos and Jacques then go to the doctor to tell him that Jacques has made up his mind. He wants to spend the holidays with his family and then it can be over for him. Toos: “I made him write it down the very same day.” Luc: “In retrospect, that was not a good idea, that you were sitting here doing this together. Those who are looking for evil can say: you surely forced him. A doctor should do that.” The GP has always supported them, Toos replies. “He was and still is fully in support of Jacques’ decision.”

In the statement that Jacques signs that day, he repeats his request for euthanasia when he has ‘permanent and almost total loss of my capacity for mental activity’ and ‘an irreversible decline’. A handwritten note is added: that the euthanasia request is for ‘early 2018’. “After Christmas, in January,” says Toos. “That was a good time for Jacques.”

An independent physician must always be consulted when there is a request for euthanasia, and the general practitioner therefore involves a SCEN doctor (SCEN stands for Support and Consultation with Euthanasia in the Netherlands). From that moment on, say Toos and the Beemsterboer children, things go wrong. That is why they show up with the SCEN reports at the newspaper: in situations like those of their husband and father, they argue, you are abandoned in the Netherlands with your euthanasia request, regardless of the fact that Jacques has always been consistent with the declaration of his intent. Marlies: “My father is now submitted to everything he never wanted. That is our struggle.”

A Visit

The SCEN doctor pays a visit to Jacques on 12 December 2017. Toos and Marlies are there with him, until the doctor says he wants to talk with Jacques privately. His visit lasts a total of one hour. When the doctor is gone, Jacques takes a wooden elephant he himself once carved from the closet. He begins to cry and says to Marlies, “This is a farewell present for your mother. I won’t be alive in a few weeks. ”

It is clear to him, Toos and Marlies think at that moment: he has expressed his death wish to the SCEN doctor. But when a little later their family physician sends them the SCEN report, it turns out things are not that clear. The SCEN doctor writes- he does not want to talk to the media about individual cases, but has no objection to having his report quoted -: ‘I meet Mr Beemsterboer in his living room and I first speak to him in the presence of his wife and a daughter. When I explain to him why I’m here, he gradually realizes that I am there to support you, his doctor, in case he opts for euthanasia. He confirms that he does want euthanasia: “if it is becoming insupportable, but it is still working out fine now.” There is an advent candle with two burning candles on the table and when I ask him if he had thought that he might want euthanasia after the fourth candle, after Christmas, he says “No way, death is not yet part of my program, I’m in no hurry . . .” When I ask him how many grandchildren he has, he does not know how to respond, but then he says, “I never counted them all” and then he looks at his wife and daughter as if to ask for a little help. He finds it annoying that he does not know the name of his grandson, “but I do not suffer from that, I can still enjoy the coziness around me.” His wife says that he is often sad and that he cries a lot. He looks at his wife somewhat surprised, but when I ask him if I can write that down in my report, he is fine with that. During the time that I am with him, without the presence of his wife and daughter, he says emphatically: “I was the first to suggest euthanasia, that is my wish, but there is no date. It all depends on: what about Jacques Beemsterboer in his totality? I’m a bit on the way out, but I’m not there yet.”

The SCEN-doctor further notes that Jacques tries his best ‘to come across as witty and sensible, but particularly when his relatives are present, he appears insecure and sometimes a little grumpy’. He finally states that Jacques does not give him the impression to be suffering. Even though the physician expects in the same report that Jacques’ condition will deteriorate in the short term ‘and he fears a ‘further decline in illness-insight and capacity’, his conclusion is that ‘Mr Beemsterboer does not currently want euthanasia’ and that the due care requirements are therefore not met.

The family physician, who wrote to Toos: ‘I thought we had a good file . . .’, seems at first obliged to accept the advice of his colleague. Toos is dismayed about these developments. She writes to the doctor: “My daughter and I were present, but were then briefly sent away. In that brief moment it was decided that Jacques does not suffer unbearably and that the advance directive cannot be implemented. How can a SCEN doctor take this decision when he knows that he is dealing with an Alzheimer’s patient? Is an Alzheimer’s patient not suffering?”

A second visit

A ​​second SCEN doctor is consulted in early January. Again Jacques is taken aside and again the Beemsterboers receive the report a few days later through the family physician. This second SCEN doctor – she also gives permission to quote from her report – writes to the general practitioner, with whom she had contact before by telephone: ‘The family is putting pressure on you as a family physician. The couple has just gotten a new home and the family does not want to move the patient to the new flat. The euthanasia should therefore take place before the move, specifically before the end of the month.’

“What is she talking about?”, the Beemsterboers later say, distraught. “It does not make sense. On the advice of our family physician, we wanted to postpone the move until after the euthanasia, so that my father could die in his familiar surroundings.”

The second doctor further notes: ‘The patient says: “I do not want to be forced to die like a used shoelace. We made that decision two months ago and when I now see how I am doing, it’s not my turn yet, I’m still too intellectually good for that. I am still able to do a lot of things.” When I ask the patient what it would be like for him if the doctor would come today with the medication for euthanasia, the patient replied: “Then I would say: why don’t you take that home?” ‘

About the second part of the conversation, where Toos, Luc and Marlies are present, she writes: ‘The family is disappointed about the turn of the conversation and asks the patient if he wants to be admitted to a nursing home. The patient answers: “I do not want to sit in a nursing home, so why don’t you give me a shot then. (…) It is a good solution to get rid of me, and it feels like I am now being disposed of.”’

This physician also concludes that the patient is currently not suffering unbearably because ‘the boundaries have moved upwards during the disease process’. Conclusion: ‘The carefully drafted declaration of intent is currently not applicable.’ 

Confusion

So no euthanasia is performed- Toos and the children find it terrible for Jacques that his long-cherished wish is not carried out. They also find it incomprehensible how the SCEN doctors have done their work: how can you, in the space of one hour, draw conclusions that run counter to a file full of advance request declarations that has been five years in the making? The fact that both SCEN doctors have spoken to Jacques alone makes the family also particularly uncomfortable. Luc: “How did that conversation go? I would like to know that. I don’t trust it. My father does not know what he says; he does not realize the impact of his words. It is indeed possible that he answers ‘no’ to the question: do you want to die? But if you describe what life in a nursing home, without mom, looks like and ask him if he wants to live like that, then you get a different story. Moreover, after five minutes, my father does not know anymore what he just said. A statement from him is in any case a snapshot. He is no longer capable of decision-making.”

Toos: “He was also confused himself. A few days after the SCEN doctor’s visit, he said: “Didn’t we agree that I would go for euthanasia in early 2018?”

The first SCEN doctor hears about the astonishment of the family and writes them an email in which he says he can well imagine how ‘powerless you can feel when things turn out differently than expected’. But he also writes that he could not observe any ‘current request’ for euthanasia from Jacques, and no unbearable suffering. Furthermore, he writes: ‘The case where someone with dementia is drugged without his current consent and then gets a lethal injection, has now become the target of a criminal prosecution … A clear comment from father himself -” I want it now “- thus remains a desirable condition.’

Criminal investigation

At the beginning of March it became public that the justice department is currently conducting criminal investigations into five euthanasia cases that had earlier been assessed as ‘careless’ by the euthanasia review committee. Among these cases, the case of a 67-year-old woman with Alzheimer’s for whom, according to the review committee, the doctor could not establish whether it was a ‘voluntary and well-considered request’ for euthanasia. That the justice department is so on top of these cases is new. In the fifteen-year history of the euthanasia law, a criminal investigation was initiated only once.

SCEN physicians must adhere to the rules of the euthanasia law, says Erik van Wijlick, policy coordinator for the SCEN program of the Royal Dutch Society of Medicine. But especially with people with dementia the situation can be ‘extremely complicated’. “Does the patient find his suffering unbearable and does he want euthanasia now? Patients’ boundaries often shift, and of course that is allowed, such an advance request is not carved in stone. What seemed to be unbearable in the past can become acceptable later.”

The euthanasia conversation with the SCEN physician must, as a rule, be conducted at least in part in private, – with a few exceptions, for example when the patient is unable to talk properly. ‘The rationale is to prevent others from influencing the euthanasia wish. Sometimes the presence of third persons steers things in an undesirable direction, for example when they take over the conversation, and even when they have the best of intentions.

The right moment

Van Wijlick understands that family members can be really surprised when a request for euthanasia is not honored while the patient is in their eyes no longer capable of decision-making. “But what someone says now supersedes what someone wrote down a while ago: an oral expression supersedes someone’s advance request. That is how we stipulated it in the law. Performing euthanasia on someone who signals that they do not want it – or no longer want it -, that cannot be done with impunity, there is also a legal history behind this. You may very well say: ‘He does not know what he says’, – that’s true, but he is still saying it, and that is what counts.”

Van Wijlick recognizes that there is a moment when a person suffering from dementia is no longer aware of his previous desire for euthanasia and can no longer express a request. “It is terribly difficult – and sometimes impossible – to be ahead of such a situation. You can decide to step out of life on time, even before the onset of unbearable suffering. That requires a lot of courage from the patient, and a window of opportunity to use the right moment. But do not forget that there are other choices at the end of life. Deliberately refraining from eating and drinking can also be a real option, just like palliative care. There is much more than only a euthanasia request. ”

Stopping with eating is not on Jacques’ agenda: every night at six o’clock he is in line on time for the dinner in the nursing home. Sometimes he helps the caretakers peeling potatoes. “Indeed,” he says, “you have to keep busy one way or the other.”

‘Tucked away’

At home in the flat on the town square of Papendrecht, Toos says that she lived here with Jacques for only six weeks before he had to leave the house. “It was no longer feasible at home. He just wandered around, I was terrified that he would fall down the stairs. He was totally helpless. They recommended immediate placement. It is urgent, madam, I was told. You should not even start with homecare.”

Toos is deeply troubled by the fact that she has ‘tucked Jacques away’. “When I wave goodbye to him, we both cry on opposite sides of that glass door.” Daughter Marlies: “Fortunately, very soon he will no longer realize it. His future is hopeless. I call that suffering; no SCEN doctor or politician can talk me out of that. And we suffer with him.” Her brother Luc slides forward in his chair and nods affirmatively. “Soon he will shit his pants and scold the lovely nurses, because that is what Alzheimer’s does to you. And we’re going to visit him for social reasons, because he’s your father, the guy behind the geraniums. But he is no longer the same. He never wanted to end up like a crazy old man.”

Getting on with life for a while

Later in the afternoon, when he is asked how he likes it here in the nursing home, Jacques looks for words. After a brief silence: “Actually … I don’t really like it. You ask me what’s nice here, and I couldn’t name anything. But I have to put up with it.” “This lady is from the newspaper, Dad,” son Luc next to him at the table tells him, “she writes about euthanasia. Do you remember how you were busy with that?” Jacques nods slowly, repeating the word. “Euthanasia … yes, it is stepping out of your life for a specific purpose. I don’t remember that I have been specifically involved with that.” When asked whether he still values his life, he says: “I still value my life, but there is not so much left for me. Well, you can still do a jigsaw puzzle . . . ; you have to do everything a little more modestly”

He repeats the latter when he is asked about the euthanasia doctor who had visited him, and what he would say to him if he asked the same question this afternoon: do you want to die? “Then I would say: life does not really bother me as such. I want to continue living, but you have to do it a little more modestly.” Outside, on the sidewalk next to the nursing home, Luc takes his car keys out of his pocket. “If we go back inside now, my dad will have forgotten that we were there five minutes ago. You heard it: when I asked him ‘How are you?’, his first response is: ‘Shitty’. It is sad to see him like this.” And what about his father saying: life does not bother me as such? Luc shakes his head. “That’s not Dad, that’s the Alzheimer’s speaking.”

SHE WANTED A GOOD DEATH, EVEN PRIOR TO CHRISTMAS by Rianne Oosterom (Trouw, 29 May 2018)

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients.

[Note; this is my translation (TL) of an article in Dutch in Trouw. the original Dutch version of this article can be found here]

Euthanasia for severe psychiatric suffering can be provided under strict conditions, but what does that do to other patients? Psychiatrists are worried.

It is late at night when Cornelia (28) receives an invitation by telephone. Not for a birthday party, but for the ‘good death’ of her friend Désirée. That is how Désirée calls the euthanasia granted to her by the End of Life Clinic. She wants to go before Christmas, she tells Cornelia, when the tree has not yet been decorated. So in two weeks.

Désirée says it was difficult to make the phone call. That she postponed it, precisely because she knows that Cornelia is struggling with the same things as her. The friends know each other from the clinic where they ended up because they both no longer wanted to live. They felt understood by each other during group therapy sessions.

When Cornelia hangs up the phone, she feels light-headed. That night, she sleeps two hours and decides to write a letter to herself. More letters will be written in the weeks before the euthanasia of Désirée, and in the months after. Cornelia describes in her letters what the euthanasia of one psychiatric patient does to another patient.

It is as if it is my death on Wednesday and not hers. Part of me is going to die with her, part of her is still alive with me. Why do I suffer so much from losing her? Maybe I have to realize that she was more important than I thought. I sometimes thought about her as an aunt. She was some kind of family, a family I selected freely myself, and therefore even dearer to me. Our connection has become very strong because of our common experiences


Incited by death

Cornelia has a reason to make these excerpts public now: more and more psychiatric patients are getting euthanasia and that frightens her. She reads about it. Watches documentaries. Because she still wants to die, even though she is doing PhD research and she has a house for herself and lovely people around her. The depressive symptoms continue to come.

She feels that perspective is lacking in the stories about euthanasia in psychiatric patients. The perspective of the environment around the patient who opts for euthanasia, an environment that often includes other patients who can be incited by death.

A number of prominent psychiatrists are concerned about this, according to an inquiry by Trouw. Their expectation is that the risk of suicide among other patients increases when more psychiatric patients receive euthanasia, That Cornelia is still alive is actually a miracle. She became suicidal after the euthanasia of her friend; so this had already happened once before, but now she really has gone downhill.

No research has been carried out on the effects of euthanasia on other psychiatric patients and that must be done, according to Jim van Os, professor of psychiatry at UMC Utrecht. “This is a completely new topic,” he says. “We know that in a network of patients, traumatic events can be a trigger for suicide. If there is suddenly an empty chair in group therapy, where people are trying to support each other, it has an enormous impact on the group. When someone disappears, it can destabilize another person.”

Psychiatrist Esther van Fenema has the same concern: “I think that after a euthanasia, you have to count on the same effect as with a suicide.” Her cautious hypothesis: “Patients can ‘ignite’ each other with suicide. Whether that works the same way with euthanasia has never been demonstrated, but indeed, it sounds logical.”

The end-of-life clinic is not so sure about that. “We have not done any research on this, but emotionally I would rather think that euthanasia in the environment leads to less instead of more suicides”, a spokesman responds. “It shows that there is a more humane way to die than the way of the violent, lonely suicide.”

The Recorder

Désirée said herself that she found it now going a bit fast. Me too. Way too fast. What else had she still wanted to do? 

What were her dreams? What would she want to do if this wasn’t it, if she was healthy, healthier?

There they stand, in Désirée’s living room, the husband and some friends, drinking wine while crying.  Désirée loves her wine. The doctors initially had trouble finding a vein to insert the infusion. Cornelia picks up her recorder and plays ‘Nun komm, der Heiden Heiland’ [now come, Gentile Saviour] , a song of salvation.

Because, she says later, “Désirée did not want to die, she wanted to get rid of her suffering.” When her friend has taken her last breath, Cornelia’s friend comes to pick her up. She feels sad, but also relieved, because she is still alive. She had this delusional thought that she would also be put on the drip.

I would have preferred to tear the mourning card into pieces. It reflected so much misunderstanding. Should I ever succumb to my death wish (which is rather unwavering, but fortunately not the only thing I have), then I hope that my mourning card will say: “We never supported you in your choice, you are too valuable for that.”

After her friend is deceased, Cornelia feels worthless. “That she got euthanasia, reflected for me a judgment. I suffer from life in the same way as she does, so am I still allowed to live? Am I not too much a burden on society? Is there a place for people like me? “By writing everything down, it became clear to me: the real problem with this is hope; and that hope was taken away from me by her death.”

Psychiatrist Van Fenema can very well imagine this. Together with Bram Bakker she organized a petition against euthanasia in psychiatry. “I recently received an email from a patient who wrote: “Please, if I am gloomy and go to the End-of-Life clinic, protect me against euthanasia. ”

Prior to that, Van Fenema had never thought about it, she says, that the threat emanating from euthanasia can be very real for patients. That they want to fight for their lives, but cannot stand up for themselves. That they feel less valuable because patients to whom they relate get euthanasia.

This does not happen just like that. In 2017 psychological problems were the reason for euthanasia 83 times, in 2016 it was 60 times. Physicians can only grant euthanasia to psychiatric patients if they can see no new treatment options. There are strict rules for that.

“We do see that the demand of one patient in a department sometimes also encourages other patients to talk about euthanasia and possibly also to formulate a request with the End-of-Life Clinic, where every request is checked to see if it meets the legal criteria,” says the spokesman for the End of Life Clinic. “Only about 10 percent of the requests are honoured.”

“Still, it remains a subjective judgment,” Van Fenema says. “It is very different than when someone has a metastatic form of lung cancer, and patients may wonder: why one person and not the other? This can cause uncertainty and anxiety.” But discussing a death wish can also yield something, says the spokesman for the End of Life Clinic. Because some people precisely abandon the idea of euthanasia after conversations, grateful for the intensive and open conversation.

Why do I continue to stick to life like that? “Life may not be worth it, but I think that it demands perseverance”, I said to Désirée a few months ago. Why am I so restless about your early death? After all, you became twenty years older than I am now. You fought twenty years more than I. Perhaps I will be as tired as you when I reach your age. Maybe I will understand you then. But perhaps I already understand you better than I want.

In the News

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients, says director Jan Mokkenstorm. When the subject is in the news, the helpline receives many phone calls from people with suicidal thoughts who refer to it.

The suicide prevention platform 113 receives concrete signals that euthanasia in psychiatry has an effect on other patients

He finds it worrisome. “I have said this from the very beginning when the end-of-life issues were on the political agenda. Also during a roundtable discussion about the end of life of psychiatric patients. In my opinion, we have to discuss this cautiously. And I also said that you have to know what you’re doing when you have this conversation publicly or through the media.”

According to Mokkenstorm, not only the euthanasia of fellow patients can lead to suicide, but the media attention to “completed life”, powders, and pills also plays a role. “Psychiatrists have known about this effect for a long time. I hope we do not have to wait five years for the definitive research on this, in order to find out that we have to deal with it more prudently.”

Mokkenstorm often receives compliments from psychiatrists abroad, because of the good work that 113 is doing in reducing suicide. “But they also say: it’s a shame that you work in a country where they have thrown death into advertising.”

It is promising that, in contrast with the trend toward end-of-life in psychiatry, the so-called recovery idea is also gaining in popularity, says Professor Van Os. “If the symptoms of a mental illness do not completely disappear, that does not have to mean the end. You can also make a mental effort and say: I am going to try to find a way to find meaning despite the voices, depressions, or fears. ”

Is there enough attention to this in current psychiatry? “It is difficult to introduce that philosophy in a mental health care system that is increasingly embracing a market model. That model focuses on removing symptoms, not the recovery of perspective despite symptoms. If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.”

If you don’t help patients to find perspective, they are going to experience hopelessness. In this situation, the idea of ​​euthanasia finds a fertile ground.

Things are not going so well with Cornelia now. She keeps writing letters about euthanasia and still has the desire to disappear. She is treated by a fine psychiatrist, but she distrusts him. “Is it for real, what is happening in the consulting room, or is there really no hope left for me and are they just ticking off all therapies until I finished them all?”

I understand why Désirée was tired of this struggle. I am tired of it too. The difference between us may be that I try to live with this inner world. That I choose to make a small peep hole in the soot that blackens the windows.

(Cornelia is only mentioned with her first name because of her privacy. Her entire name is known to the editors.)

Talking about suicide is possible through emergency and prevention phone lines. Website with contact information for crisis centres with helplines in all Canadian provinces: https://suicideprevention.ca/need-help/

Ontario Mental Health Helpline
1-866-531-2600

 

 

Boudewijn Chabot, “Worrisome Culture Shift in the Context of Self-Selected Death” (translation)

(NRC Handelsblad June 16, 2017; for the original version, click here)

(translation Trudo Lemmens)

Message for the government coalition negotiation table

The Euthanasia Law does not provide protection to people with dementia and psychiatric problems, says Boudewijn Chabot. “Silently, the foundation of the law is being eroded.”

Boudewijn Chabot is a geriatric psychiatrist and researcher of voluntary end-of-life choices.

About twenty years ago, I was sitting on the bench for the accused in the High Court. This was ten years before the adoption of the Euthanasia Act, after I had given a fatal drink to a 50-year-old, physically healthy social worker. Judgment: ‘guilty without punishment’. I fought – and fight- for self-determination. However, I am now worried about the rate at which euthanasia is performed on demented and chronic psychiatric patients.

Recently, the third evaluation of the Euthanasia Act, which came into force in 2002, came out. And like the previous evaluations, the tone was positive. “The goals of the law have been realized. All actors are satisfied about the content and functioning of the law.” That sounds all very well, but it’s not. Since this contentment hides problems which the researchers fail to mention.

To understand what has gone wrong, the reader must know the three most important “due care criteria” of the law. There must be: 1) a voluntary and deliberate request; 2. unbearable suffering without prospect of improvement; 3. No reasonable alternative to euthanasia.

The second and third requirements are closely linked because if another solution, such as specialist palliative care, is indicated, the suffering is not without prospect of improvement. If the patient refuses that option, the physician will not be convinced of the “unbearable” nature of the suffering and will not provide euthanasia.

At least as important is what is not in the law. There is no requirement that the disease has to be physical, and the doctor need not have a treatment relationship with the patient. Many doctors and lay people thought this was the case. But such restrictions are deliberately omitted to allow for the development of concepts such as “unbearable suffering without prospect of improvement.”

In the last ten years, the number of euthanasia reports has increased from two thousand to six thousand per year. People ask for it more often, doctors are more often willing to provide it, and consultants who assist the doctors give more often the green light. In 2016 the review committee found that only 10 of the 6,091 (0.16 percent) cases was done without due care.

Screen Shot 2017-06-19 at 5.16.26 PM

All of this indicates a shift in culture in relation to self-selected dying under the custody of the doctor. Apparently doctors heed the increasing demand for euthanasia in the context of all kinds of nasty diseases, particularly cancer. In and of itself, this increase does not disturb me – even if the number exceeds ten thousand in a few years.

What does worry me is the increase in the number of times euthanasia was performed on dementia patients, from 12 in 2009 to 141 in 2016, and on chronic psychiatric patients, from 0 to 60. That number is small, one might object. But note the rapid increase of brain diseases such as dementia and chronic psychiatric diseases. More than one hundred thousand patients suffer from these diseases, and their disease can almost never be cured. Particularly in these groups, the financial dismantling of care has affected patients’ quality of life. One can easily predict that all of this could cause a skyrocketing increase in the number of euthanasia cases.

Strikingly, doctors from the End of Life Clinic Foundation* are often euthanizing these patients, while as a matter of principle they never treat patients for their illness. By 2015, a quarter of euthanasia cases on demented patients were performed by these doctors; in 2016 it had risen to one third. By 2015, doctors of the End of Life Clinic performed 60 percent of euthanasia cases in chronic psychiatric patients, by 2016 that had increased to 75 percent (46 out of 60 people).

There appears to be a realization that something is going wrong, because the review committee has recently been strengthened with a few specialists in the field of geriatric medicine and psychiatry. However, their vote will be lost in the choir of the forty-five commissioners who are responsible for the current ‘jurisprudence’.

These figures also cannot be found in the annual report of the committee or in the statistical tables of the researchers. For sure, the fact that in 2016 euthanasia has been granted to a total of sixty psychiatric patients is included in the annual report of the review committee. But nowhere in the report is it mentioned that in 46 of these cases, it was a physician at the End of Life Clinic who granted the request. That number you have to dig up from the annual report of the End of Life Clinic. Is this fog purely coincidental?

Cornerstone of the law

Is it still possible to put a break on this development? It won’t come from the review committee, which cannot go back on its ‘case law’. Already back in 2012, at the time of the second review of the law, it became apparent that the review committee no longer discussed whether the due care criteria of “unbearable suffering without prospect of improvement” were fulfilled. The committee members found this difficult to evaluate, as was already apparent from the previous review of the law: “If the notifying physician and the consultant found the suffering to be unbearable, who are we to say something more about it here?”

The interpretation of this cornerstone of the law already came down to what the doctor and consultant accept as unbearable suffering without prospect of improvement.

This is also clear from the reviews. In 2016, the committee found in only one of the 201 cases of euthanasia in dementia and psychiatry that the evaluation had been careless [not in line with due care] because the requirement of “unbearable suffering” had not been met. What problem is this evaluation structure, which costs about four million euros annually, really solving? The researchers fail to answer this question.

Once upon a time, moving to a nursing home or receiving treatment with some medication was still considered a “reasonable alternative” for euthanasia. At least it had to be tried. Many doctors now accept that a patient can refuse a reasonable alternative and that this does not create a barrier for euthanasia. That brake has now also disappeared.

In the Chabot judgment, the Supreme Court had still required “exceptionally great caution” with respect to psychiatric patients. Those words are now trite, because a reasonable alternative to death can now be refused and the committee will still provide its stamp of approval that the euthanasia was done with due care. This has been the case for many years, since already at the time of the previous evaluation of the law the majority of the review committee did not find that doctors were too easily accepting that patients reject a reasonable alternative.

Within the End of Life Clinic, a group culture has emerged in which euthanasia is regarded as virtuous labor

Ethicist Govert Hartogh, who has for many years been a member of the Evaluation Committee, has identified this subtle but steady process of erosion: “The patient suffers unbearably when he says he suffers unbearably and an alternative is not a reasonable alternative if the patient rejects it. In fact, these requirements then add little to the requirement of a voluntary and thoughtful request.”

The erosion of nice words reminds us how it has gone with the abortion law. In order to get abortion, a woman had to be in an “emergency” situation. Soon every woman knew that she got what she wanted if she requested it and rejected any other solution. The Dutch legislature has often been creative in areas of morality, with big words that, after a while, completely lost their bite. Consider the “enduring disruption” that was required for divorce.

The fading of legal requirements does not have to be a problem. Sometimes this leads to an amendment of the law, such as with “enduring disruption.” Sometimes we also accept that the core idea behind the law has shifted to favour self-determination, such as in the case of abortion. The problem is, however, that the euthanasia committee continues to speak of “unbearable and hopeless suffering” in its annual reports, as if these words still really have great weight.

While researchers are pointing to the growing emphasis on self-determination, they fail to mention the erosion of the two other legal requirements. Silently, the very foundation of the law is eroded.

The doctors working within the End of Life Clinic consider themselves at the “forefront” and call the clinic a ‘centre of expertise’. Unfortunately, there is very little expertise in palliative care, for the simple reason that when a patient rejects treatment it is accepted as an expression of self-determination.

In 2016, about 40 physicians working part-time at the End of Life Clinic performed euthanasia 498 times. On average, this amounts to 12 euthanasia’s per doctor, one per month. Within the clinic, a group culture has emerged in which euthanasia is considered to be virtuous labour, especially in severe dementia and chronic psychiatric patients. The fact that the End of Life Clinic also rejects many requests is thereby irrelevant, since many people who do not at all qualify for euthanasia contact the clinic.

What happens to doctors for whom a deadly injection becomes a monthly routine? They are surely well-intended, but do they also realize how they are fanning a smoldering fire that can become a blaze because they fuel the death wish of vulnerable people who are still trying to live with their disabilities?

The End of Life Clinic is now actively recruiting psychiatrists. It justifies this by pointing to the long waiting list. Their task: relieving the unbearable and unrelievable suffering from psychiatric patients through euthanasia. Every time the Clinic is in the news, a wave of depressed patients whose treatments are allegedly exhausted but many of whom have never been properly treated report to the Clinic. Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription business, good treatment has become scarce.

The newly recruited psychiatrists won’t need to enter into a treatment relation with the patient. The evaluation committee has accepted that in the case of severe physical illnesses. Now it has also applied this to incurable brain diseases—without discussing it with members of the psychiatric profession by the way.

Ever since budget cuts turned chronic psychiatry into a diagnosis-prescription industry, good treatment has become scarce.

This has been an overly hasty step. Without a therapeutic relationship, by far most psychiatrists cannot reliably determine whether a death wish is a serious, enduring desire. Even within a therapeutic relationship, it remains difficult. But a psychiatrist of the clinic can do so without a therapeutic relationship, with less than ten ‘in-depth’ conversations? Well …

With dementia there is another concern. The Euthanasia Law has added that a written letter of intent may replace an oral request, while the other due care criteria remain applicable. According to ethicist Den Hartogh, this implies that for a demented patient, two of the three due care criteria disappear—the requirement of a well-considered request and the requirement that reasonable alternatives have to be tried—because they cannot be applicable.

What remains is the requirement that there should be unbearable suffering that cannot be alleviated. But it is often very hard to determine whether there is unbearable suffering in advanced dementia, as five professors of geriatric medicine recently stated in NRC. The personal colouring of ‘suffering’ in dementia plays a major role.

Yet, that uncertainty doesn’t appear to be a problem for the review committee. When a physician and a geriatric specialist note in their report that a person with dementia suffers unbearably, the committee may occasionally ask a question about that, but it doesn’t cause any further problems.

With the erosion of the concept of “unbearable suffering” and the determination that a written consent is the same as an oral request, the door has been opened wide for euthanasia of patients with severe dementia.

Yet, we still face a formidable obstacle in the context of severe dementia: how do you kill someone who does not collaborate because he has no realization of what will be happening? Already in 2012, NRC described how this works. A spouse mixed sleep medication in the porridge of his demented wife before the GP arrived with his deadly syringe. At the time, the review committee failed to mention anything about this assistance. In later cases of euthanasia with advanced dementia, the committee also remained silent about the precise details of the execution.

In 2016, there were three reports of euthanasia of deep-demented persons who could not confirm their death wish. One of the three was identified as having been done without due care; her advance request could be interpreted in different ways. The execution was also done without due care; the doctor had first put a sedative in her coffee. When the patient was lying drowsily on her bed and was about to be given a high dose, she got up with fear in her eyes and had to be held down by family members. The doctor stated that she had continued the procedure very consciously.

Thus, a doctor can kill someone surreptitiously, because you cannot resist after being sedated. If necessary, physical force is used. A large group of doctors called this “sneaky” and published a full-page advertisement, including in NRC, letting our society know that they will not do this.

History repeats itself

In the third review of the law we can find the following remarkable sentence about the surreptitious administration of a fatal drug: “This can in those cases be inherent to the nature of the situation and has not been previously considered a problem.”

The surreptitious administration of medication has previously occurred, but has never been mentioned in an annual report. That is odd, because the committee queries doctors relatively frequently about the medications they administered and judges deviations from the Euthanasia Directive relatively frequently as careless. In a deeply demented person, we are dealing with a morally problematic act: how do you kill someone who does not understand that he will be killed? Remaining silent about the precise way of execution appears very far removed from the transparency that the committee expects of doctors.

The researchers compare this form of cover-up to be “inherent to the nature of the situation”. When it comes to the killing of a defenceless human being, everything that is deemed “inherent to the situation” should be very clearly identified in the evaluation and in the annual report. The review committee has failed in transparency, for five years now. And the researchers smoothen this out.

Would the Public Prosecutor’s Office now take up its responsibility after being laid back about it for fifteen years, and submit the case to the court? Earlier, when the review committee considered in one euthanasia case that due care had not been met for all three legal requirements, the public prosecutor failed to prosecute.

In the context of severe dementia, the following legal questions can only be answered with authority by the Supreme Court: can people be killed surreptitiously? Isn’t that a form of duress, since any possible resistance is being prevented? Isn’t it precisely when we’re dealing with a defenceless person that any hint of coercive force must be avoided?

In the case of the woman who got up with fear in her eyes, the public prosecutor can launch an appeal in the interest of the law. He can then submit the matter directly to the Supreme Court. I think that the public prosecutor will very likely take a wait and see approach. In that case, geriatricians, for whom clarity on this legal question is of utmost importance, can appeal the decision not to prosecute in a court of law.

History repeats itself when it comes to laws dealing with challenging ethical issues. Self-determination around the end of life is for many people as important as in the context of abortion. It is therefore not surprising that the first due care criterion, a voluntary and well-considered request, has gained in importance. And that criterion has pushed the other two due care requirements to the margins. What is astonishing is that in the third evaluation of the law, the researchers still keep up the smoke screen around ‘unbearable suffering without prospect of improvement’.

Where did the Euthanasia Law go off the tracks? The euthanasia practice is running amok because the legal requirements which doctors can reasonably apply in the context of physically ill people, are being declared equally applicable without limitation in the context of vulnerable patients with incurable brain diseases. In psychiatry, an essential limitation disappeared when the existence of a treatment relationship was no longer required. In the case of dementia, such a restriction disappeared by making the written advance request equivalent to an actual oral request. And lastly, it really went off the tracks when the review committee concealed that incapacitated people were surreptitiously killed.

I don’t see how we can get the genie back in the bottle. It would already mean a lot if we’d acknowledge he’s out.

(*note translator: The End of Life Clinic (official name: Stichting Levenseindekliniek) offers access to euthanasia to patients whose own physicians have denied their request for euthanasia. For more information on the organization, click here)

Victor Lamme, “The Practice of Euthanasia Has Landed on A Slippery Slope. Huppakee Weg!” [Hoppity gone] (transl. op-ed Volkskrant)

Huppakee Weg [Hoppity Gone]!

The Monday evening NTR broadcast of the documentary about the End of Life Clinic shows, according to Victor Lamme, professor of Cognitive Neuroscience, that the Dutch euthanasia practice is on a slippery slope.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things, “De Vrije Wil Bestaat Niet”

[translation TL: click here for the original version]

February 16, 2016

In a documentary broadcast Monday by NTR, the End of Life Clinic very proudly presented three cases of euthanasia. Excerpts of this documentary had been shown earlier in the programme The World Keeps Turning, where the clinic’s work was highly praised; how ‘beautiful’ it all was. ‘Horrible’ seems to me the more appropriate term.

The euthanasia doctor found in her pronunciation of the word ‘huppakee’ [hoppity] sufficient evidence for a clearly present desire to die

It has become very clear now that the Dutch euthanasia practice has landed on a slippery slope and is now used to solve very different problems than unbearable suffering. A most obvious case in point was that of Hannie Goudriaan, a woman with semantic dementia. This woman had written a will in 2010, in which she had declared that she no longer wanted to live if as a result of her dementia she would no longer know who she was and would be housebound. The End of Life Clinic decided that this point had been reached. They got strong support from the husband, who spoke for her.

Anyone who has seen the documentary could feel the pressure Hannie was under to stick to her once completed advance directive. She was able to drive, visit a skating competition, and have a drink in a pub. But her husband had no intention to visit her if she would end up in a home, and the euthanasia doctor found in the pronunciation of the word ‘huppakee’ sufficient evidence for a clear and present desire to die.

The disappearing desire to die

Should we keep people with dementia to their previously completed Living Will? Many people resent the prospect of dementia. It is therefore increasingly common to prepare an advance directive like Hannie did. What is thereby forgotten is that once that time has come, this desire to die most often disappears, and demented elderly are often far from unhappy.

A comparable situation – and easier to investigate – is that of patients with locked-in syndrome, a brain injury that causes total paralysis and whereby people can only blink their eyes. Nearly every normal person says that if he would ever end up in this situation, he would like to put an end to his life. It appears, however, that these patients rate their quality of life on average with a 7, similar to the score given by the average student. People simply adapt very quickly to a new situation, how miserable that situation may be.

In addition: dementia changes the brain. He or she thus becomes literally a different person; with other norms, feelings, and desires. He is then simply no longer the person who signed at one point in the past the advance directive. To hold demented people to their living will is as weird as saying to an 18-year old that he must become a fireman, simply because he said that once when he was eight years old. People change, and nowhere faster than in the context of dementia.

Euthanasia Marketing

Finally, it is highly questionable how ‘free’ people are when they complete such an advance directive. The pressure on the elderly is continuously increasing. They are being told that health care costs are being wasted in the last years of life, and that they wouldn’t want to be a burden on their children. And that it is really so very ‘beautiful’ to take matters into your own hands.

The elderly are being told how ‘beautiful’ it is to take matters into one’s own hands

That kind of social pressure can become very forceful, consciously or unconsciously; and there is ample scientific evidence for that. Do not underestimate at all the power of the “euthanasia marketing” of recent years, with associations like “Uit Vrije Will”, which do not shy away from using marketing ploys such as the use of celebrity endorsement, proudly displaying Dutch celebs like Hedy d’Ancona, Mies Bouwman, Frits Bolkestein and Dick Swaab on their websites. That way it becomes more or less the norm to end your life when it becomes somewhat less appealing.

What problem is euthanasia really supposed to solve? Elderly take up time, and demand money and effort, which modern society doesn’t want to muster. In the same NTR broadcast we see the centenarian Ans, who fully enjoys a day at sea. Her suffering mostly consist of the fact that no one takes her there anymore. Except on that last day.

It all comes eerily close to the famous scene from the science fiction film Soylent Green, where elderly people are encouraged to commit euthanasia after seeing a movie about how beautiful life on earth once was, a long time ago.

When Hannie gets the lethal injection she says ‘it is horrible’. It is the first time she says something else than “huppakee.” [hoppity] Her last words touch the essence.

Victor Lamme is Professor of Cognitive Neuroscience at the University of Amsterdam (UvA) and the author of, among other things “De Vrije Wil Bestaat Niet”.

[I translated this op-ed using google translate as a rough basis to save time, then corrected and improved the translation based on the original Dutch version]

Chris Rutenfrans: “They Often Arrive Here Waving Their Euthanasia Declaration” (transl. editorial Volkskrant)

[Note: Translation of an op-ed published in the Dutch Newspaper De Volkskrant of 17 February 2016. “Ze komen vaak wapperend met hun euthanasieverklaring binnen”] Screen Shot 2016-02-27 at 12.58.32 PM.png

It’s Euthanasia week. Monday, February 15 NTR broadcasted a documentary “End of Life Clinic” which caused a huge uproar in the (social) media.

Chris Rutenfrans, opinion editor of the Volkskrant. February 17, 2016.

Her doctor refused euthanasia because he never heard from her that she wanted euthanasia or wanted to die.

It is highly questionable whether Marcel Ouddeken and Hans Kema have done a favour to the support for euthanasia with their documentary “End of Life Clinic.” The broadcast by the NTR Monday has evoked so much horror that it could very well be a turning point in the euthanasia debate. Former journalist Wouke van Scherrenburg posted on Twitter: “I’ve dreamed about that woman in the chair and it was a gruesome dream.”

The viewer sees three cases of termination of life by a doctor at the End of Life Clinic, an institution that handles death requests of those whose requests are refused by their family physician (GP). The euthanasia of Hannie Goudriaan touched a particularly sensitive nerve, as is apparent from the responses. Hannie Goudriaan suffers from semantic dementia, a form of dementia that primarily affects the speech center in the brain. Her ability to verbally express herself is limited, and is in the documentary largely restricted to the expression “huppakee, weg!” [hoppity gone]

Her life is terminated on the basis of an advance directive from 2010. It is very obvious that she doesn’t know anything anymore about this. Her family physician has refused euthanasia because he has never heard from her that she wants euthanasia or that she wants to die. He says that he has not been sufficiently supported by the SCEN-physician [note translator: SCEN is the official Dutch Support and Consultation Service for Euthanasia] and the neurologist he consulted. But the doctor of the End of Life Clinic maintains that in the seven conversations he has had with her, she has made it clear to him that with respect to her wish to die by euthanasia, she “knows what she wants.”

Hannie receives, seated in a chair, a lethal dose of medication. Her death takes place in front of the camera. Hans Beerekamp writes in the NRC Handelsblad on Tuesday: “The images of how she receives a lethal injection seated in her armchair at home will be shown around for years to come, at home and abroad. In the Netherlands, the formula ‘Huppakee. Weg” [hoppity gone] now counts as a valid expression when establishing consent, and for determining the presence of unbearable and hopeless suffering.”

This is clearly not an emergency situation of hopelessness. The weekend before her death, you see Hannie Goudriaan enjoying a day at Thialf [note translator: a skating ring] in Heerenveen. You also see how she skillfully drives her car while her husband, who insists on the termination of her life, sits next to her passively, as he has done for 35 years.

Execution

Rob Bruntink, a palliative care expert, writes on his blog Bureau MORBidee: “Never before have I seen a euthanasia that looked like an execution. A slaughter. But the husband found it beautiful. And the doctor found it worthy, “because she didn’t snore in the process.”

Bruntink says he can imagine that this documentary can represent a turning point in the thinking about euthanasia in the Netherlands. “Many people call this outright murder. I got a message from my mother with the question ‘was this real or was it fake?’ That is, I think, illustrative of the astonishment this broadcast evoked across the country. ”

Bruntink himself avoids the use of the term “murder”, “because it keeps the discussion away from what it should really be about: do we as a society really want to go in this direction?”

He believes that the supply of euthanasia creates the demand and that it makes other options superfluous. He is convinced that palliative care, where pain management and relief of suffering are central, is less well developed in the Netherlands because of the option of euthanasia.

His work in hospices, specialized in terminal care, have taught Bruntink that people have difficulty judging what they can handle in the future. “At the hospice, they often arrive waving their euthanasia requests, but only one in a hundred will also receive euthanasia. The others find again and again that life is still quite bearable. You could say that euthanasia prevents that people continue to mature.”

Euthanasia prevents that people continue to mature

Bruntink finds the report of the Advisory Committee Completed Life chaired by Paul Schnabel encouraging: “It says that we should worry about each other and increase investment in health care for the elderly, especially for people with dementia and chronic psychiatric patients.”

Chris Rutenfrans is opinion editor of the newspaper.

[Translated by me (TL) with google translation for a rough basis to save time, then correction and improvement of the text]

 

“Psychological Suffering is Never Trivial” (translation response letter)

This is a response to the letter by Johan Braeckman et al., which itself was a response to a letter by Ariane Bazan et al.. in which the authors argued that the Belgian legislator ought to remove the option to request euthanasia purely on the basis of psychological suffering. This response was published in De Morgen on 14/12/2015

(Google translation was used for a rough basis, and I corrected the text based on my own knowledge of Dutch–my mother tongue)

Psychological Suffering Is Never Trivial

Ariane Bazan (Prof Clinical Psychology ULB), Gertrudis van de Vijver (Prof Philosophy, University of Gent), Willem Lemmens (Prof Philosophy, University of Antwerpen), Maarten Van Dijck (Prof Epistemology & History of Science, University of Gent), Jasper Feyaerts (Clinical Psychologist, University of Gent)

“Don’t trivialize psychological suffering,” Johan Braeckman and others write in response to our open letter, and this is about the best possible outcome we could have expected. It is the very essence of our argument.

We must, however, qualify the distinction objective/subjective as put forward in the response by Braeckman and others. Psychological suffering is obviously a subjective experience, that is clear, but a mental illness is always more than just subjective. The way the illness relates to objective factors is different than in the case of physical disorders. There is no tissue damage, no detectable degradation process in the brain: you cannot see in an autopsy if someone had a depression or not, which you can, for example, in the case of dementia.

But, contrary to what our critics suggest, brain scans do show changes, for example when someone suffers from depression. What is important is that these changes are functional and dynamic: what they show depends on when the scan is taken. They don’t have the irreversible character of tissue damage. Herein lies the fundamental difference with the subjective suffering in the case of physical ailments: you can objectively determine an irreversible process that underlies this suffering.

The person who plunges into a depression falls prey to a real feeling of lack of perspective. Clinical and research experience show, however, that even a succession of major depressive episodes doesn’t imply that the suffering is hopeless.

Suppose someone says, “I have failed in all areas of my life, professional, personal, familial,” and the therapist thinks otherwise on the basis of various specific elements that the patient previously mentioned. Is the only way to avoid being paternalistic or pedantic to simply respond to this patient: “Yes, You are right.”? No, the therapist will both respond to the reality that the patient experiences while also gently suggesting other angles. Clinical care is empathic, indeed, but it is also thoughtful empathy, which involves a gentle invitation to entertain a different perspective. Here, clinical ethics requires to be receptive to the feeling of hopelessness and to acknowledge it, without abandoning the ethical duty to also explore the horizon of other options.

Not trivializing psychological suffering means precisely this: taking account of its uniqueness. The course of a cancer is indifferent to the way the oncologist listens and speaks. Research shows that with mental problems, the relationship between patient and therapist is a decisive factor for the success of the treatment. That constitutes the fundamentally different reality of mental illness. The patient who suffers psychologically is fundamentally attached to the words of the therapist, while the cancer does not care about what the oncologist says.

This brings us to the crux of the ethical basis of the euthanasia legislation: the centrality of the value of autonomy. Testimonials from euthanasia cases involving patients with purely psychological suffering indicate that patients sometimes ask at the last minute: “You are sure, doctor, aren’t you, that nothing more can be done to help me?” Or “You really can confirm that my disease is incurable, isn’t it doctor? ” (see for example the case of Christophe, Knack, 10.22.2014).

This shows how the will of the patient is neither purely autonomous, or undivided, nor unambiguously expressed. In order to recognize the autonomy of a patient, you have to take into account how the will is divided and always probes what the other wants. The patient becomes far more articulate when she is empowered to explore the broad spectrum of her will, with the support of the therapist who continuously invites her to do so. The role of the therapist is in other words never that of a neutral expert who merely confirms the patient’s choice.

Obviously, this problem presents itself in the context of every euthanasia request, but in the context of physical conditions there is an unambiguous limitation as a result of objectively determinable irreversibility. This crucial containment factor is missing here. We are therefore concerned about how the law assigns a position of medical expert to the doctor in the context of issues that primarily concern interpersonal relations. The debate about euthanasia on grounds of mental suffering alone cannot be settled simply by referring to the virtue of diligence and the value of autonomy. Moreover, it is precisely because of the importance of autonomy as a core value that we have to be very careful with how we assign in our legislation an exceptional position to experts.

Even those who are deeply concerned about the right to self-determination should be sensitive to these concerns.

“Don’t Trivialize Psychological Suffering” (translation response letter)

This is a translation from Dutch of a Response by Johan Braeckman et al. to an Open Letter Ariane Brazan et al. re Belgian Euthanasia practices in the context of psychological suffering, published in the Flemish-Belgian newspaper De Morgen 8/12/2015. (see also the translation of the response by Ariane Brazan et al. to this letter, published in De Morgen 9/14/2015)

Don’t Trivialize Psychological Suffering (De Morgen 11/12/2015)

Johan Braeckman (Prof Philosophy University of Gent), An Ravelingien (Ethicist, Bioethics Institute Ghent), Maarten Boudry (Philosopher, University of Gent))

In an open letter, dozens of academics and health care providers voice their concerns about the regulation concerning euthanasia in the context of unbearable mental suffering (DM, 8/12). This concern is undoubtedly well intentioned but nonetheless misguided. The letter writers demand “objective” evidence of the irreversibility of psychological distress, such as an “organic injury or tissue damage.” They expect “factors that are independent of what is subjectively felt on the disease and is thought.” They wan to eliminate euthanasia based on “purely psychological suffering” from the current legislation. Particularly the word “merely” is very significant here.

We believe it is a misconception that only in cases of so-called physical suffering euthanasia is “responsible”. The demand to make suffering (and pain) “objectifiable” is a strange form of positivism and scientism. Do we have to ignore the repeated and clear testimony of people’s psychological suffering and not take it seriously as long as we cannot establish it scientifically? Do we address the ultimate request for help only when a brain scan demonstrates the suffering? The letter writers fail to appreciate not only the professional competence of doctors and therapists who establish the diagnosis, but they also want to turn the clock back by decades, by declaring patients incapable of expressing themselves about the nature and intensity of their suffering.

Hopeless suffering

Of course, suffering is subjective. How else could it be? If a person suffers, he or she is obviously the only one who can reasonably assess this experience. Suffering belongs to a subject. To ignore this subjective dimension showcases a lack of empathy. The letter writers’ comment that they are “alarmed by the increasing trivialisation of euthanasia on the grounds of psychological suffering” is therefore questionable.

In an interview with Bart Schols in The Appointment (8/12), Ariane Bazan, one of the initiators of the letter, refers to an article and the book by psychiatrist Lieve Thienpont, “Libera me: About euthanasia and psychological suffering.” The work of Lieve Thienpont apparently convinced her that euthanasia for psychological suffering must again be banned. That’s remarkable, since the book by Lieve Thienpont makes it precisely all too clear how hopeless the situation is of those who request euthanasia for reasons of psychological suffering. These are people who one often has tried to help for many years, with all the means that medicine and psychological support services have to offer. Some of these patients are so desperate that they commit suicide, with sometimes terrible and dehumanizing consequences.

Do the letter writers really think that the legislator, and the doctors who are willing to meet some (!) requests for help, tread so lightly with the request to bid farewell to life in a dignified manner? That they are not aware of the potential of various therapies and of the strict conditions for euthanasia in cases of psychological suffering? Precisely because psychological suffering is harder to measure, and a specific group of patients is not terminally ill, the legislator has added two additional criteria of good care for these patients to a euthanasia request: a second opinion by a psychiatrist and a minimum waiting period of one month.

The letter writers stick to a general discussion about the “feeling of hopelessness” that people experience when they are depressed, which for them is “in no way proportionate to the real hopelessness of a situation.” But obviously, not everyone with a depression qualifies for euthanasia without further therapeutic intervention. That is obvious. In practice, it concerns in our country about fifty people per year, a tiny fraction of the number of people going through a depression.

The letter writers’ dismissal of the hopeless suffering of this small group of people as “purely subjective”, a feeling that is an inherent part of depression, not only illustrates a lack of empathy; it also amounts to a paternalistic reflex: “You think you suffer hopelessly, but we know better. ” Incidentally, acute depression (eg. through a grieving process) usually interferes with the statutory requirement of voluntariness. In most cases of request for euthanasia, it involves other mental disorders, sometimes in combination with long-term chronic and treatment-resistant depression.

The false distinction between physical and psychological suffering

For the letter writers, the idea that the prospect of death can be part of good care amounts to “the radical failure of the mental health care sector”. This remarkable statement was a few decades ago still an often-heard objection in the euthanasia debate, also in the context of physical suffering, “Death is the enemy of medicine; when a physician reliefs someone from his misery, it means the failure of medical care.” Since then, we have come to know better. Unfortunately, the suffering of some patients is so unfathomably deep, that granting their request for an assisted medical and painless death remains the best thing the health sector has to offer. Ariane Bazan and her co-authors are apparently of the opinion that psychiatric patients’ treatments never end. That comes down to the idea that mental patients have no right to refuse treatment, which is completely contrary to the law on patients’ rights.

The euthanasia legislation is based on some fundamental philosophical principles related to a dignified end of life, in which empathy and self-determination are key. We see no good reason why patients who suffer unbearably psychologically, as unambiguously recognized by competent physicians and in line with the legislation, should be taken less seriously than those who are identified as suffering from a supposedly “objective physical” cause. By the way, people with an incurable physical illness also experience mental suffering. If we follow the logic of the letter writers, one can therefore contest the “unbearable” nature of each euthanasia request, which is a violation of the autonomy and therefore the dignity of any patient requesting euthanasia. The vast majority of caregivers today are not precipitating, nor was the legislator in 2002.

Johan Braeckman (hoogleraar wijsbegeerte, Universiteit Gent)
An Ravelingien (ethicus, Bioethics Institute Ghent)
Maarten Boudry (wetenschapsfilosoof, postdoctoraal onderzoeker, Universiteit Gent)
Etienne Vermeersch (gewezen voorzitter van het Raadgevend Comité voor Bio-ethiek)
Wim Distelmans (prof palliatieve geneeskunde, VUB)
Paul De Knop (Rector, VUB)
Wouter Duyck (opleidingsvoorzitter psychologie, Universiteit Gent)
Freddy Mortier (ethicus, UGent)
Marleen Temmerman (buitengewoon Hoogleraar, Universiteit Gent)
Gwendolyn Rutten (voorzitter Open Vld)
Jacinta De Roeck (gewezen senator en voorzitter van LEIF Antwerpen)
Serge Gutwirth (Professor mensenrechten, VUB)
Tony Van Loon (emeritus moraalwetenschappen, Vrije Universiteit Brussel)
Jean-Jacques Amy (Emeritus Hoogleraar Gynaecologie-Verloskunde, Vrije Universiteit Brussel)
Sonja Snacken (Professor criminologie, Vrije Universiteit Brussel)
Peter Paul De Deyn (Neuropsychiater, Hoogleraar, Universiteit Antwerpen en Groningen)
Paul Destrooper (bestuurder LEIF, Forum Palliatieve Zorg en Zuster Leontine Fonds)
Geert De Soete (Decaan Fac. Psychologie en Pedagogische Wetetenschappen, UGent)
Rik Schots (Professor Hematologie UZ Brussel)
Thierry Vansweevelt (Hoogleraar Medisch recht, Universiteit Antwerpen)
Jean Paul Van Bendegem (filosoof VUB, Brussel)
Marina Van Haeren (algemeen directeur deMens.nu en secretaris-generaal Centraal Vrijzinnige Raad)
Frank Schweitser (Ma Wijsbegeerte & Moraalwetenschappen, Verpleegkundige,
W.E.M.M.E.L. expertisecentrum ‘waardig levenseinde’)
Edel Maex (Psychiater, Ziekenhuis Netwerk Antwerpen)
Sylvain Peeters (psycholoog en voorzitter van deMens.nu)
Patrik Vankrunkelsven (docent huisartsgeneeskunde, KULeuven)
Peter Deconinck (emeritus hoogleraar kinderchirurgie, VUB)
Piet Hoebeke (professor, Voorzitter Medische Raad, Vakgroepvoorzitter Uro-Gynaecologie, Diensthoofd Urologie, UZ Gent)
Mario Van Essche (voorzitter HVV en advocaat, Putte)
Gert De Nutte (algemeen coördinator Humanistisch-Vrijzinnige Vereniging)
Franky Bussche (directeur Studie en Onderzoek deMens.nu)
Guy Peeters (arts, Voorzitter Socialistische Mutualiteiten)
Anne-France Ketelaer (jurist en adjunct-algemeen directeur van UVV/deMens.nu)
Marjan Joris (coördinator De Maakbare Mens vzw)
Frank Christiaens (Anesthesioloog – Urgentiegeneesheer, LEIF-arts)
Stefaan De Smet (lector psychiatrische verpleegkunde en onderzoeker forensische psychiatrie, Hogeschool Gent – Vrije Universiteit Brussel – Universiteit Gent)
Bea Verbeeck (Psychiater-psychotherapeut Brussel)
Liesbet Lauwereys (coördinator De Maakbare Mens vzw)
Gwen Verbeke (LEIF-arts, Palliatief arts-geriater AZ Jan Portaels, Vilvoorde)
Magali de Jonghe (lid van de Federale Controle Commissie Euthanasie, lid RvB LEIF W-VL en vrijzinnig humanistisch consulent huisvandeMens Brugge)
Andrea Thienpont (onthaalmedewerker LEIF GENT)
Mia Fermon (partner van Koen, twee jaar geleden overleden door euthanasie)
Benneth De Proft (bestuur Vonkel en LEIF Antwerpen)
Jacqueline Herremans (advokaat, voorzitster association pour le droit de mourir dans la dignité, lid van de Euthanasie commissie)
Robert Gosselin (radioloog – UZ Gent)
Reinier Hueting (huisarts, LEIFarts, Geraardsbergen)
Ann Staels (klinisch psycholoog, Vonkel)
Tino Ruyters (directeur vzw Free Clinic, Antwerpen)
Robert Schurink (arts, directeur Nederlandse Vereniging voor een Vrijwillig
Levenseinde)
Marc Tourwé (hoogleraar Universiteit Antwerpen, faculteit Toegepaste Ingenieurswetenschappen)
Christine Demeulemeester (psychotherapeut, Aalst)
Patrick Wyffels (leifarts, huisarts in Halle-Zoersel)
Winne Caemaert (Osteopate)
Jan Bernheim (Professor em. End-of-Life Care Research Group, Faculty of Medicine, Vrije Universiteit Brussel)
Guido Pennings (hoogleraar Bioethics Institute Ghent)
Heidi Mertes (ethicus UGent)
Dirk Demuynck (uitgever)
Brenda Froyen (ervaringsdeskundige, auteur van het boek Kortsluiting in mijn hoofd)
Rahis Remmery (Onthaalmedewerker LEIF GENT)
Hilde Verbruggen (Onthaal medewerker Leif Antwerpen)
André Van Nieuwkerke (Voorzitter LEIF West-Vlaanderen, Eresenator)
Inès Staelens (patiënt, ervaringsdeskundige)
Dominique Lossignol (M.D., Institut Jules Bordet, ULB)
Ann Callebert (klinisch psycholoog – onderzoekster herstel en euthanasie)
Kurt Audenaert (Hoogleraar psychiatrie, Universiteit Gent)
Erik Struys (bestuurder vzw Omega)
Bert Coessens (Sympathisant Vonkel)
Frank Vandendries (moreel consulent, levenseindecounselor Zuid-Nederland)
Rik Achten (Voorzitter Breinwijzer VZW, Diensthoofd radiologie UZGent)
Marleen Peters (projectleider en publicist, gespecialiseerd in het zelfgewilde levenseinde, Amsterdam)
Erna Van der Auwera (onthaalmedewerker LEIF Antwerpen)
Willy Depecker (psychoanalyticus-psychotherapeut, Brugge)
Dirk Devroey (professor, voorzitter vakgroep huisartsgeneeskunde en chronische zorg VUB)
Gaston R. Demarée (KMI-wetenschapper op rust)
Charles Susanne (prof. antropologie, VUB)
Nathalie Albert (ervaringsdeskundige Alexianen Zorggroep Tienen)
Elke Gyselaers (ervaringsdeskundige, Licentiaat Moraalwetenschappen, VUB)
Bart Callebert (ervaringsdeskundige, Gent)
Jasmien Caemaert (maatschappelijk werker)
Kathleen Van Steenkiste (vrijzinnig humanistisch consulent)
Simon Van Belle (medisch oncoloog, U Gent / UZ Gent)
Karl Laurent (Moreel Consulent Luchthaven Zaventem)
Diana Van de Gracht (vrijwilligster bij ,,Netwerk Levenseinde” in Oudenaarde)
Frank Heyvaert (LEIF arts voor LEIF Antwerpen)
Luc Proot (coördinerend LEIFarts LEIF West-Vlaanderen)
Louisette Vervaet (vrijwilligster verschillende organisaties, eredirecteur)
Peter Theuns (Hoofddocent statistiek en deontologie, Vrije Universiteit Brussel)
Gert De Rouck (informaticus)
Petra de Jong (voormalig directeur NVVE)
Arnold Decraene (huisarts, Lede)
Edward Keppens (emeritus professor, Vrije Universiteit Brussel)
Koen Titeca (psychiater, Kortrijk)
Rita Thienpont (vrijwilligster LEIFpunt Gent/VONKEL)
Wim Betz (arts, professor emeritus VUB)
Geert Derre (zelfstandig psychotherapeut, bestuurder Vonkel en onhaalmedewerker Leif Gent)
Hilde Borms (vrijzinnig humanistisch consulent)
Gustaaf Cornelis (wetenschapsethicus, Vrije Universiteit Brussel, Universiteit Antwerpen)
Jeannine Bellaert (LEIF-W.VL., Coördinator vrijwilligers)
Sigrid Lauwereys, vrijzinnig humanistisch consulent, Aalst
Serge Coopman (arts, Skin & Laser Clinic, Antwerpen)
Gerard De Fré (Psychiater, Aalst)
Mia Voordeckers (Radiotherapie/Leifarts UZ Brussel)
Jurgen Slembrouck (moreel consulent, Antwerpen)
Bart De Schutter (ere-rector VUB)
Pierre Martin Neirinckx (moreel consulent, criminoloog)
Ton Vink (filosoof en counselor, Nederland)
Ruddy Verbinnen (arts, bestuurder van de vzw Omega en Algemeen Coördinator van de Universitaire Associatie Brussel)
Roos Deschamps (ervaringsdeskundige)
François Pauwels (LEIFarts, equipearts Omega)
Maridi Aerts (gastro-enteroloog, LEIF arts, Brussel)
Jaak Remes (vrijwillige medewerker LEIF Gent)
Nathalie Vanderbruggen (Psychiater/ psychotherapeut, UZ Brussel)
Fredje Baert (PASS Actief Gent)
Chantal De Poorter (onthaalmedewerker LEIF-Gent – Vonkel)
Els Verbelen (klinisch psychologe te Kalmthout)
Tom Hannes (filosoof & schrijver)
Fred Waumans (socioloog, Hasselt)
Lidia Rura (doctoraal onderzoeker vertaalwetenschap, UGent, ex-partner van een overleden euthanasiepatiënt)
Jos van Wijk – Voorzitter Coöperatie Laatste Wil – http://www.laatstewil.nu
Gert Rebergen – Secr./penningmeester Coöperatie Laatste Wil – http://www.laatstewil.nu
Karen François (hoofddocent wijsbegeerte, VUB)
Cathy Macharis, Professor, Brussel
Karen Verstraeten (psychotherapeute, specialisatie chronisch zieken, Deurne)
Albert Stas (Directeur deMens.nu)
Kristel De Vos (begeleidster volwassenen met een beperking, Lennik)
Mayke Hundhausen (Onthaalmedewerker LEIF Gent)
Colette Raymakers, voorzitter Netwerk Levenseinde, bestuurder LEIF
Michel Flamée (emeritus professor, Vrije Universiteit Brussel)
Laura Michiels (vrijwilligster LEIFAntwerpen)
Steven De Lelie (acteur)
Jean Meurs, Humanistisch-Vrijzinnige Vereniging, Mol
Mia Tytgat, Humanistisch-Vrijzinnige Vereniging, Mol
Klara Jacops (psychologe, Gent)
Patrick Rentmeesters (burger)
Mil Kooyman (Gewezen vakbondsverantwoordelijke, Bestuurder van Woonzorgcentrum Domino)
Herman Thienpont (psycholoog)
Willem Laureys (MD, Omnipracticus op rust)
Elisa Bulckens (criminologe, psychotherapeut, Antwerpen)
Rudi Collijs (lid Liberales, Lochristi)
Michael Portzky (klinisch psycholoog, Gent)
Jan Baccaert (geoloog, vrijwilliger UGent)
Marjorie Vangansbeke (Massage-therapist)
Herbert Plovie (Geneeskeer-Kolonel b.d., Bredene)
Jean-Jacques De Gucht (gemeenschapssenator)
Veerle De Vos (Psychotherapeute en medewerkster Vonkel, Gent)
Philippe Van Cauwenberghe (Psychiater, Gent)
Patrick Simons (Huisarts- Leif-arts – palliatieve equipearts, Halle)
Henri Bartholomeeusen (Président du Centre d’Action Laïque)
Maya Franssens (Klinisch Psychologe-Neuropsychologe en Psychodiagnosticus, Sleidinge)
Asteer Caemaert (ex-psycholoog/psychotherapeut)
Miek Caenberghs (psychologe en familietherapeute)
Joke Denekens (emeritus Hoogleraar huisartsgeneeskunde)
Rika Peters (LEIF-medewerker Gent)
Jelissa Boiy (verslavingsarts Kortrijk en Roeselare)
Joeri Van Looy (Klinische psycholoog en oplossingsgericht systeemtherapeut, Wilsele)
Marijke Mulder (levenseindecounselor en zingevingscoach, Noord Nederland)
Robert Geeraert (bestuurder LEIF)
Det Tacq (psychologe, Gent)
Frank Stappaerts (inspecteur niet-confessionele zedenleer)
Geert Crombez (professor, Department Experimental-Clinical and Health Psychology, Health Psychology Lab, Universiteit Gent)
Ann Naessens (onthaalmedewerkster LEIF Antwerpen)
Hendrik Cammu (professor, arts, VUBrussel)
Hubert Van Hoorde (ereprofessor, Universiteit Gent)
Eddy Van Gelder (voorzitter raad van bestuur VUB)
Michele Leunen (gynaecologe, UZ Brussel)
Sebastiaan Engelborghs (neuroloog en hoogleraar neurowetenschappen, UAntwerpen)
Ann Buysse (hoogleraar psychologie, UGent)
Marie Jeanne Vanrobaeys (zus van iemand die uit het leven stapte op basis van ondraaglijk psychisch lijden)
Carlo Goethals ( leraar, ervaringsdeskundige)
Hugo U. Besard – Kunstenaar/graficus – prof Artesis Plantijn Hogeschool Antwerpen
Monica Verhofstadt (masterstudente klinische psychologie, onderzoekster naar ondraaglijk lijden bij psychiatrische patiënten)
Ann Weckx (scenografe en kunstenaar, verbonden aan Topaz in Wemmel)
Greta Fiers (Oostende)
Piet Van Leuven (emeritus gewoon hoogleraar, Mol)
Vera Rogiers (professor, diensthoofd Toxicologie, fac G&F, VUB)
Guy Hubens (Chirurg Antwerpen, hoogleraar UA)
Bart Keymeulen (Gewoon hoogleraar VUB, Endocrino-diabetoloog)
Els Goderis (directeur huizenvandeMens West-Vlaanderen & ondervoorzitter Leif West-Vlaanderen)
Frank Scheelings (docent VUB, coördinator Centrum voor Academische en Vrijzinnige Archieven)
Carine Vrancken (psycholoog, abortuscentrum Hasselt )
Isabelle Libbrecht (psychiater)
Johan Braeckman (uroloog UZ Brussel, professor VUB)
Mia Taffijn (Verpleegkundige UZ Brussel)
Sven Estercam (arts, diensthoofd en medisch coördinator diensten psychiatrie St Franciskusziekenhuis Heusden-Zolder en Jessaziekenhuis Hasselt)
Charlotte Stolte (Anesthesiste, AZ Nikolaas)
Dirk Avonts (professor huisartsgeneeskunde, Universiteit Gent)
Wim Vandenbussche (hoogleraar Nederlandse taalkunde VUB)
Anouck Debroye (HR Interim Manager & Coach)
Gily Coene (professor VUB)
Magriet De Maegd (Cultureel medewerker in het supportief en palliatief dagcentrum TOPAZ)
Michel De Brabander (huisarts, Humbeek)
Gemma Cogen (verplegende, UZ Brussel)
Frie Blanckaert (gepensioneerd lector Arteveldehogeschool)
Eliane van den Ende (journalist, Beigem)
Theo Compernolle (psychiater)
Mieke VERDIN (actrice, medewerker bij de communicatiemodule van de Leif-opleidingen in Wemmel)
Niels De Temmerman, professor, Vrije Universiteit Brussel
Greet Blanckaert (psychotherapeut, Gent)
Michel Deneyer (docent bio-ethiek, VUB)
Marc Noppen (arts, pneumoloog, CEO UZ Brussel)
Dr. Eric Vandevelde (gynaecoloog, LEIFarts, Ronse)
Jim Van Leemput (ere algemeen directeur VUB, voorzitter Instelling Morele Dienstverlening Antwerpen)
Winnie Belpaeme (vrijzinnig-humanistisch moreel consulente, Gent)
Rik Pinxten (professor emeritus culturele antropologie, Gent)
Hilde Depla (zelfstandig schilder)
Henri Oger (onthaalmedewerker LEIF, Gent)
Tessa vermeiren (journalist met rust)
Pierre Pol Vincke, (zoöloog, gewezen Minister-raad voor Internationale samenwerking FOD-BZ.
Ruth Raes (Coördinator Netwerk Levenseinde, Palliatieve thuiszorg Zuid-Oost-Vlaanderen).
Marianne Marchand (Gewezen Voorzitter Humanistisch Verbond)
Robert Cliquet (prof. em. Antropologie, UGent)
Joris Weyns (LEIF-arts, equipe-arts)
Yves Kengen (Directeur Communication – Médias, Centre d’Action Laïque ASBL)
Katrien Van den Meerschaute (vrijzinnig humanistisch consulent, huisvandeMens, Aalst)
Rita Van der Stoelen (Onthaalmedewerker LEIF, Gent)
Paula Schepens (onthaalmedewerker Leif Gent en Brugge)
Jutte van der Werff ten Bosch (Kinderarts)
Alex Michotte (neuroloog UZ Brussel)
Tine Berbé (vrijzinnig humanistisch consulent, Brussel)
Tim Trachet (VRT journalist)
En: Els Vermeeren, Marc De Waele, Marc Coucke en tientallen andere patiënten, psychologen, therapeuten, artsen, ethici e.a.