Greater Role for Experts by Experience in the Dialogue on Euthanasia in Cases of Psychological Suffering Is Desired

Before a discussion can be held about the content of a guideline, isn't it first relevant to ask whether the party taking the initiative is able to see its own role in the unbearable suffering?

10
684

Editor’s Note: This article first appeared on Mad in the Netherlands. It was written by MitN editor Monique Timmermans.

Euthanasia based on psychological suffering has been possible for more than twenty years. However, it is only in recent years that an increase in the number of euthanasia procedures has been observed. The subject is also finding its way into the media. At talk show tables, in newspapers and magazines, young people in particular, their loved ones or care providers share personal stories about suffering and the euthanasia process.

Although the attention for this form of euthanasia is important for its understanding, it also leads to criticism. The reporting is said to be too one-sided, with too little room for the complexity of the euthanasia practice. Death is said to be romanticized, and euthanasia is too central as a solution for psychological suffering.

These concerns about the media attention, together with the increase in euthanasia among young people, lead to a strong counter-reaction from a group of psychiatrists this summer. A group of experts by experience also finds that their perspective is not heard enough in the discussion. In a letter, they ask the professional association for psychiatry to involve them more in the dialogue about the euthanasia practice. 

Black and white photo of many hands laid on top of each other

The contents of the letter have been shared with Medialogica and can be read below. In a diptych, Myrthe Buitenhuis and Rosalyn Saab investigate the reporting on euthanasia in psychiatry, and speak with psychiatrists, experts by experience, and involved organizations. This diptych can be seen from October 4 in the program Medialogica of Omroep Human.

Letter from a group of experts by experience to the NVvP:

In response to the increasing discussion about euthanasia in cases of mental suffering, the NVvP is calling on its members to enter into discussions about this within the professional group in the run-up to the revision of the euthanasia protocol in October.

As experts by experience, we believe it is essential that our perspective is included in this discussion. We would like to emphasize that this letter is not intended as criticism of care providers or those who request euthanasia. Our goal is precisely to promote dialogue and to advocate for a careful and well-considered policy.

There is a worrying trend visible in which young women in particular are confronted with serious mental disorders and self-harming behavior. This often leads to an intense desire to die, after which protocol treatments are used. If these treatments do not provide relief, the patient can be declared ‘treatment-free’ and euthanasia becomes a last option. This worries us. For someone in such a vulnerable position, this can actually reinforce the feeling that there is no salvation possible. Although we recognize this deep suffering and have experienced similar situations ourselves, we now know that there are often treatments available outside of mental health care that can be effective.

A death wish is often the result of unbearable suffering that makes life unbearable. However, true healing begins with being seen and heard, as psychiatrist Detlef Petry did until his retirement in 2009. Many of his ‘exhausted’ patients were thus given a chance at a dignified existence.

Nowadays, however, there is less and less room for this. Complex care requires cooperation between different domains, but this is now being hampered by the influence of market forces and competition. Waiting times are getting longer, specialized clinics are closing their doors, and patients who have exhausted their treatment options are being taken in by the CIB, where, according to a recent article, a culture of punishment and power prevails. Euthanasia was also offered there to patients who failed to recover in such an environment. Too often, people emerge from psychiatric damage. Treatments according to protocol have sometimes seriously damaged us. Isolation cells, electroshocks and (forced) medication have left deep scars.

Medication can be supportive, but can also worsen depression, anxiety and suicidal thoughts and hinder recovery. People are not machines that you can simply adjust with substances. Human experiences cannot be captured in protocols and recovery takes time. Patience, compassion and customization are needed to guide someone through such a process. Processing (early childhood) trauma requires space and safety. For us, connection with safe people, personal control and space in the recovery process were crucial factors.
Based on our own experiences, we know that mental health care does not always provide the right help for serious psychological problems, and that treatment sometimes even has the opposite effect. We ask care providers and policy makers to listen to us and to enter into a dialogue with us about what good, trauma-informed care details.

In addition, we must look critically at society. Why do so many young women have to deal with serious psychological problems? It is good that euthanasia is possible in cases of unbearable (psychological) suffering, but it should never become an easy solution to a complicated problem.

We call on the NVvP and other involved parties to involve us in the evaluation of care, euthanasia practice and the revision of the guideline.

We speak from experience and believe that our perspective is indispensable.

Authors:
Ewout Kattouw
Charlotte Margaretha
Maria Apeldoorn

Co-signatories: Perceval Foundation

Response from NVvP:

The website of Human contains a response from the NVvP. Incidentally, this response was not given directly to the initiators of the letter. The association indicates that it is working with patient organization MIND to implement patient involvement in the drafting of the guideline.

The fundamental question remains unanswered:

The fact that the NVvP did not take the trouble to answer the concerned experts by experience directly and the fact that in their indirect response they only responded to the part concerning the drafting of the guideline, worries us, as editors of Mad in the Netherlands.

Before a discussion can be held about the content of a guideline, isn’t it first relevant to ask whether the party taking the initiative is able to see its own role in the unbearable suffering?

***

Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

10 COMMENTS

  1. There is no expert by experience where there is socially conditioned interpretation of experience. Of course, the socially conditioned interpretation of experience is still superior to the socially conditioned interpretation of other people’s experiences which psychology and psychiatry only know, but it is not the direct, unprejudiced, silent observation and understanding of the actual which is very simply the only way to understand the actual. Understanding literally means to stand under, to observe what is without being affected by it. To withstand it, to stand underneath it, to see it. Interpretation prevents this clarity of perception, and therefore distorts, fragments and confounds understanding. But we will never learn this in time as a society and it is worthless making efforts to reform either psychiatry or society. These very efforts to reform what is are themselves the very same kind of socially conditioned activity that proves itself impotent in all the serious problems of humanity and the Earth. Wake up to this fact and you’ll experience a big death. But everything that died was the false, and without it, there is this same clarity. Mother Nature made eyes and brains that were clear, pure. Everything that has darkened and destroyed our eyes and brains were made through a social structure characterized by violence and domination. All must be blind to tolerate this system, hence ubiquitous socially conditioned blindness. Seeing is the only escape from social conditioning, but it’s easier said then done, and most people – the vast majority, perhaps almost all – will die blind.

    Report comment

  2. Euthanasia is a slippery slope. People who believe in reincarnation might end up seeking euthanasia for the most spurious of reasons like I could never get good on the guitar no matter how hard I tried, or because I look exactly like someone who does Multiplicity and Mad studies at University. If euthanasia became like psychiatry probably most people from my background would have a life expectancy of about 14.

    Report comment

    • So how come euthanasia is not suicide but murder, even though euthanasia can basically be described as a rather less rash and rather more bureaucratic form of suicide? It is like a heroin injection clinic. You don’t say ‘this isn’t drug use, it’s state poisoning’, do you. You say the state is assisting to keep the drug use as safe and, hopefully, as humane as possible. How is euthanasia different? Because you say so and this resembles fascism more then a proper discussion about euthanasia which may be itself a diseased bit of social thinking but not the worst part by a long shot. The violence of conflict over opinion is far more threatening to humanity then euthanasia which could only improve the lot of Mother Earth who has been destroyed by 8 billion socially conditioned, destructive greed machines like you and me. Pigs with pork on our plate is what we are. And we levelled the land to erect a huge automated factory farm to farm ourselves and all our future generations. We replaced the whole of nature for this system which spits out me and you. But you can spit IT out, and it is this me and you, literally. The society out there is only the consequences of the social process as thought pretending to be me and you and making the external social structure in, through and as you. This is demonic possession. Truth is the emptiness in our eyes and our minds. Though dark, this emptiness lets light in and fills the inner with light.

      Report comment

      • Here is the Mirriam-Webster dictionary definition of “euthanasia:”

        “the act or practice of killing or permitting the death of hopelessly sick or injured individuals (such as persons or domestic animals) in a relatively painless way for reasons of mercy”

        I’d say that whether it constitutes murder or not depends on the desires of the subject and the intentions of the one helping them die. To put it another way, is the person truly helping the subject accomplish his/her goals or simply helping themselves at the subject’s expense. In the latter case, I’d call it murder.

        Report comment

        • “To put it another way, is the person truly helping the subject accomplish his/her goals or simply helping themselves at the subject’s [or religion’s, or corporation’s, or government’s] expense?”

          “In the latter case, I’d call it murder.” Me, too, or at least it was attempted anticholinergic toxidrome murders, that I personally call attempted murders, by my ex-religion and criminal doctors … since I had no desire to die, when I was a young mom, hoping to properly raise my children.

          Sadly, we are dealing with a repeating of the worst of history, a new psychiatric holocaust … seemingly for the worst religions, corporations, and governments on the planet.

          Report comment

  3. No negotiation with the state, or what you call society, has ever worked. The changing of minds, as they call it, is one total social process independent from all the actors. The actors are like words in speech – they are not that which speaks, and they are fixed terms, fixed by the speaker, which is the social process as thought pretending to be each animal, each brain. What negotiation with the state ever worked? The civil rights movement was a transformation of hearts and minds, which erupted as a creative negation of the social with moral and spiritual power, a transformative force, and that was a manifestation in the total social consciousness, not the products of the agency of isolated and illusory individuals, no matter how memorable or great they appear. So the real source of all radical transformation is in your very own consciousness, not in activities directed as violence to other structures and other consciousness, although if there is no other room in society and it’s intellect for creative and radical action, in violence and confusion it will inevitably be. Either way it will do what is necessary – wipe this disease process from the face of the Earth and from the brains of any human beings who can survive the destruction of the false, which is to say, everything you are and the whole way you live now. I would welcome the destruction of the whole way I live, even though I like a drink and indulgence in any manner of chaos and mischief. Some peace and quiet would be much preferred, which is to say the destruction of all social-historical forms, all thought and civilization. We can have living forms again, not dead tyrannical forms that lose all meaning as they fade and warp through history.

    Report comment

  4. I just think we need to de-criminalize suicide. Just like some states have de-criminalized certain chemical substances (drugs previously considered illegal to sell)
    And throw out mental hygiene laws.
    Keep the State out of individuals’ lives and deaths.
    If one commits an act that is against a law that has been democratically agreed upon by the nation, then they should be arrested. Not before. All this leaving it up to a psychiatrist to predict the future behavior of other people is ridiculous. I’ve been with my spouse every day for 10 years and sometimes her behavior STILL surprises me! How a perfect stranger can predict a persons behavior is ludicrous & yet they do it all the time. It can save lives and it can ruin lives.
    If one decides to die, one should be allowed to do so. If that means hiring a medical professional or anyone else, to assist me, then that’s between those two parties. It’s none of anyone else’s business

    Report comment

LEAVE A REPLY