Posted on October 2, 2019 at 8:00 AM
by Suzanne van de Vathorst
In 2018, 6126 cases of physician aid in dying (PAD) (4.4% of all deaths) were reported in the Netherlands. Of these 6126 cases, 67 involved patients with a psychiatric disease. Psychiatrists reported 34 of these, general practitioners (part of the Netherlands’ extensive system of family physicians) reported 20. The Netherlands has universal health care insurance, and equitable access to good quality health care, including psychiatric care. The Dutch generally trust their doctors and assume they are doing their job with our best interest in mind. Some general practitioners may know their patients for their whole lives. This context matters.
Most Dutch psychiatrists are very reluctant to grant a request for PAD; in a recent study only 39% of all psychiatrists found granting the request of a psychiatric patient conceivable. In 2018, the Dutch Association for Psychiatry issued a guideline advising utmost caution in handling requests from psychiatric patients. Patients, whose requests for PAD were turned down by their own physician, can however turn to an organization called the End-of-Life clinic, which is not actually a clinic but a mobile service providing life-ending care to carefully screened patients. In 2018 this end-of-life clinic received 640 requests for PAD by psychiatric patients, and helped 56 die; that is, they granted 8% of all requests.
In the authoritative 1994 Chabot case, the Dutch High Court found that the cause of a patient’s suffering should not matter for the evaluation of a PAD request. The basic idea in the Dutch law, formalized 8 years later in 2002, is that a doctor faces a moral dilemma when asked to help with PAD by a patient who suffers unbearably. The doctor has a duty to protect and prolong life, but also a duty to relieve suffering. When these two are incompatible, i.e. there is no way to relieve suffering without helping to die, Dutch doctors, under strict conditions called the “due care” criteria, are allowed to help their patients die. A patient has no right to PAD and doctors are under no obligation to do so; the provision of aid in dying must be voluntary for both parties.
The debate among Dutch psychiatrists revolves around two of the due care criteria that the Dutch law stipulates, namely that the request should be made voluntarily, and that the doctor is convinced the patient suffers unbearably and without any prospect of improvement. Leaving aside the difficulties surrounding the assessment that the request is voluntary, let me address the requirement that there be ‘no prospect of improvement.’
Battin and Kious mention a worry that in some instances of PAD and euthanasia (as it is termed in the Netherlands) not all reasonable treatments have been exhausted; I assume the reason this would be a bad thing is because a chance of recovery may have been left unexplored. They also state that a patient’s implicit belief about how long the suffering is going to last adds to his or her suffering. This last remark is more important than they seem to realize. A lot of pain and other kinds of suffering can be bearable precisely because someone knows it will be only short lived. My (Dutch) dentist, for example, weighs the disadvantages of anesthesia against the duration and the possibility of pain in order to decide whether anesthesia should be offered. To this day many Dutch women (as I did) give birth without any form of anesthesia (unheard of in the USA I guess), because although the pain can be extreme, it is also made bearable by the knowledge that it won’t last forever, and that it has a goal, namely to have a child. Conversely, knowing it will not pass or will even become worse adds significantly to any suffering. I assume the authors won’t argue otherwise. However, the knowledge of whether suffering is likely to pass is not a strictly subjective matter. Whether the patient experiences something as unbearable may be subjective, but as a professional (the dentist, the midwife) you know whether it is possible or even likely to pass or not. Indeed, patients are often reassured that things will get better in an effort to help them bear whatever suffering they are undergoing.
Back to psychiatry. A patient may feel that his suffering will never end, but a psychiatrist may know otherwise, and this in my view is the reason people are involuntarily admitted, to prevent them from suicide while they are suffering. The doctors know they will get better, even if the patients themselves don’t see it at the time. On the other hand, it would be inhumane to involuntarily admit someone to prevent her from committing suicide when you know she will never ever get better; that would truly be condemning her to a life of severe suffering. So, the question whether the suffering can be alleviated or will improve in the future is neither entirely subjective, nor without impact on the suffering the patient experiences. One important aspect that a psychiatrist should therefore investigate, when a patient asks for PAD, is whether it is possible, or even likely, that the suffering will diminish or disappear in the future. The possibility that another treatment may help the patient is also the most frequently cited reason to refuse a request. Because PAD is both irreversible and a burden to the physician, for whom providing this help is by no means easy, any other treatment has preference if there is a chance it will help.
Related to this point that the knowledge that there will be no relief from suffering adds to the suffering, is the striking observation that in the Netherlands and Belgium, patients who have gone through the evaluation process and been told that ‘yes they were qualified to receive PAD,’ often postpone their actual PAD. Just knowing that there is a way out, that there is help if you truly are no longer able to bear it, makes suffering bearable. It may seem counterintuitive,- the very reason in their cases doctors were willing to help was precisely because their suffering already was deemed unbearable-, but apparently knowing there is death on request available makes PAD unnecessary. The argument is not new: some time ago the Dutch lawyer Huib Drion put this forward as an argument for the availability of a suicide pill for the elderly. Because they have this at hand, so he argued, they manage to bear their suffering a little while longer. We know this happens to patients with all kinds of illnesses, but also to psychiatric patients.
Take the example of the writer Virgina Woolf, who killed herself because she felt unable to cope with another episode of her bipolar disorder. This shows that for some patients, the prospect of going through another episode, even when it is not entirely impossible that they will come out of it, is too much of a burden to be willing to wait for that to happen. The foundation de Einder published an open letter in May 2019 by a retired psychiatrist who suffered from bipolar disease and who couldn’t face going through the whole cycle again, saying that his ability to cope had been eroded over the years by his age and concurrent illnesses. He committed suicide because he deemed the whole process of evaluation for euthanasia as too long and bothersome. If he had made a request, however, one of the things his psychiatrist would have needed to evaluate is whether his view that he no longer was able to cope was a reasonable expectation or not. (In fact, he wrote that he did discuss this with his psychiatrist and that the psychiatrist agreed that his ability to bounce back was severely diminished). In these cases it is the ability to cope with suffering that is eroded, and I guess that may be another contributing factor to the suffering itself. These are usually patients with a long history of psychiatric suffering, for whom psychiatrists see no other option.
In short, I think the evaluation of a request is not entirely subjective because estimating the likelihood of recovery involves a professional judgment. This judgment could moreover be made by two or three psychiatrists, to allow for an intersubjective judgment of the suffering and possible ways to alleviate it. That may not be infallible, but is probably the best we can do. The unbearableness of the suffering is simply not enough reason alone to qualify for PAD; what has to be evaluated whether there truly is no reasonable prospect of recovery, either because of the nature of the illness, in view of earlier treatments, or because of the erosion of the patient’s ability to cope.