[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.”
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