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

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 with daughter Marlies, says Luc when he is about to leave. Jacques’ eyes twinkle again. With gallows humour: “Oh, that one too? What a tough day I have.” They never intended 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 opt for 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.”