2018-69, due care criteria not complied with
Non-straightforward notification, consultation, physician is responsible for quality of expert’s report.
The patient, a man in his fifties, had suffered from psychiatric disorders for 30 years. Three years before his death – after one of his parents had died – he was referred to the mental healthcare services, where it was established that he had thus far not required professional help thanks to the support and structure provided by people close to him. The diagnosis was: grief reaction in a man exhibiting elements of both autism and psychosis.
The patient was a vulnerable man, susceptible to depression when things got too much for him. In the two years before his death, the patient had been briefly hospitalised on a number of occasions because of suicidal tendencies.
The patient had discussed termination of life with his general practitioner, who did not want to perform euthanasia. He then contacted the End-of-Life Clinic (SLK) with a request for euthanasia, over two years before his death. After a visit from an SLK nurse, this request was refused, due to the short time that had elapsed since his parent’s death.
The patient was treated with medication, including antidepressants and antipsychotics. There were conversations with a psychiatrist, and a nurse provided support and guidance with a focus on daytime activity. The patient did volunteer work and received art therapy and psychoeducation. After these treatments the symptoms of depression and psychosis were less prominent. However, they had no significant effect on his suffering.
That suffering consisted of the fact that everything was too much for him: the daylight as soon as he awoke and all the things he had to do the rest of the day. He could not remember names, often lost his way and had increasing difficulty with technical activities. He suffered from nightmares, panic and anger attacks, and extreme overstimulation, arising partly from contact with other people.
He also suffered from his dependence on professional carers. Due to his rigid and compulsive way of dealing with things he was unable to adapt to constantly having different people around him. He experienced permanent tension and lost control of his daily life. Panic and despair could overwhelm him at any time. He felt unable to function in modern society and was not the person he wanted to be, a person with a job and a family. In addition he suffered from intestinal problems, which increased his suffering. He experienced his suffering as unbearable.
About 10 months before the patient’s death, a psychiatrist involved in his treatment indicated that continuing psychiatric treatment offered no prospect of improvement of the symptoms. The psychiatrist did, however, expect the patient’s functioning to improve if he were housed in an adapted setting: a form of sheltered housing with structure, care and people to talk to. About nine months before his death, the patient moved to such a facility. However, partly due to the unavoidable contact with other people, this did not alleviate his suffering.
About a year before his death he again contacted the SLK. Nine months before his death the patient discussed euthanasia with the physician (a psychiatrist) for the first time. On that occasion, the patient also asked her to actually perform the procedure to terminate his life. From just over three months before his death, the physician had four more conversations with him. The physician consulted the patient’s general practitioner, a psychiatrist who was involved in his treatment, the mental health nurse, his case manager and his informal carer.
Following the request for euthanasia, the physician consulted an independent psychiatrist for a second opinion on the diagnosis, possible treatment options and their prognosis. About two months before the patient’s death the independent psychiatrist concluded that the main diagnosis was autism spectrum disorder (ASD). ASD comprises a range of forms of a disorder (autism) whereby the brain processes information differently.
In addition he suffered from an unspecified schizophrenia spectrum disorder with brief psychoses (a psychiatric condition in which a person experiences the world differently from other people, for instance hearing voices or seeing things that are not there) and an unspecified depressive mood-related disorder. According to the independent psychiatrist there were hardly any treatment options for the main diagnosis. There were options for both the psychotic and depressive symptoms, but the patient refused them.
The independent physician consulted by the physician was an independent psychiatrist and SCEN physician. The independent physician noted that the patient appeared to be suffering from psychotic symptoms which did not fall into one of the usual categories of disorders (near psychosis). He saw a person with below-average intellectual abilities, a relatively mild form of autism and compulsive tendencies. The independent physician saw little evidence of major depressive order.
Despite repeated requests, the patient was unable to give the independent physician an unequivocal answer to questions regarding the unbearable nature of his suffering. He was strongly focused on his wish and intention to die by means of euthanasia. However, he did not succeed in making it clear to the independent physician what precisely his suffering consisted of or why it was unbearable and without prospect of improvement. The independent physician believed that, partly due to his mental disorder, the patient was unable to appreciate the available options for improving his physical and psychosocial circumstances.
The subjective experience of unbearable suffering could not, according to this psychiatrist, be shared by an objective observer. He believed that there was still a significant amount that could be achieved for this patient. An inability or unwillingness to accept help did not justify euthanasia as a solution, according to the independent physician. He therefore concluded that it could not be established to a sufficient degree that there was a palpable wish to die as a result of unbearable suffering without prospect of improvement, in a patient who was, incidentally, decisionally competent. The independent physician found that the due care criteria had not been complied with.
The physician herself was of the opinion that the patient’s suffering was almost exclusively caused by the main diagnosis, ASD. Treatment of the secondary diagnoses, the temporary psychotic and depressive symptoms, would, even if it was successful, make little difference to his suffering. The physician was satisfied that this suffering was unbearable to the patient and with no prospect of improvement according to prevailing medical opinion.
The committee had questions for the physician after reading the case file. For instance, they wanted to know how the patient had fared in the sheltered housing setting and why the physician had not requested an extra consultation, given that the independent physician had found that the due care criteria had not been complied with.
As regards the housing, the physician said that the patient had indicated that living in this setting was difficult for him. Although there were some advantages (people he could talk to, pleasant daytime activities) they were outweighed by the disadvantages. He experienced his contact with fellow residents, who were psychiatric patients, as very confrontational and distressing. There was little privacy and it was noisy. This caused constant overstimulation, which made him more unsettled. The patient resisted moving to different accommodation with more privacy.
The reason he had moved to the current accommodation was that loneliness caused him a lot of tension as well. He realised that he could end up back in a situation similar to the one he had previously been unable to cope with, and that he would then regularly have to be hospitalised due to a mental health crisis. This dilemma contributed to his suffering. He could not live alone, but living in the sheltered housing was not an option for him either.
As regards setting aside the independent physician’s opinion, the physician said that she disagreed with his conclusion. Speaking in general terms, the physician said that if a SCEN report made her doubt her own findings, she would make a further assessment. In this case the independent physician was unable to sufficiently assess the patient’s suffering. According to the physician, this was related to the nature of the patient’s disorder. A person who suffers from ASD is unable to properly express his suffering in words. That treatment options might be available and that the patient was unwilling to try them was not further explained in the independent physician’s report, even after multiple requests to that effect from the physician.
The independent physician was probably referring to the treatment options mentioned by the independent psychiatrist for the secondary diagnoses, including depression. According to the physician, any treatment for depression would not be relevant to alleviating the patient’s suffering. Even if there were symptoms of depression, they were reactive and not the primary cause of the patient’s suffering.
That suffering was caused by the patient’s limitations as a result of the ASD. The physician was therefore convinced that there was no reasonable alternative for the patient. The treatment options proposed by the attending psychiatrist had been given a chance, but did not in essence make a difference to the severity of the patient’s suffering. As the independent physician’s report did not cause any doubt in her mind, the physician saw no reason to consult a second SCEN physician.
She also did not think it would be appropriate as it would cause the patient additional distress. This would be even more the case if another second opinion were requested from an independent psychiatrist. The physician also did not want to create the impression that she was ‘shopping around’.
The committee argued that, in line with several RTE considerations following the Supreme Court judgment in the 1994 Chabot case, physicians must exercise particular caution when a euthanasia request results largely from suffering arising from a psychiatric disorder. Such cases often involve complex psychiatric problems and require input from someone with specific expertise (see also the guidelines of the Netherlands Psychiatric Association (NVVP) on dealing with requests for assisted suicide from patients with a psychiatric disorder, 2009). The particular caution that the physician must exercise mainly concerns the due care criteria with regard to the voluntary and well-considered nature of the request, the absence of any prospect of improvement, and the lack of a reasonable alternative (see the Euthanasia Code 2018, paragraph 4.3).
It was established that the attending psychiatrist, the independent psychiatrist and the independent physician, who was also a psychiatrist, considered the patient to be decisionally competent regarding his request for euthanasia. Partly in view of this, the committee found that the physician could be satisfied that the patient’s request was voluntary and well considered.
Was particular caution also exercised with regard to the patient’s unbearable suffering without prospect of improvement and the absence of a reasonable alternative in his situation? The committee believed it was not. As regards the independent psychiatrist, the committee found that although such a psychiatrist was consulted, the shortcomings in his report were such that it could not be considered an adequate second opinion.
The committee found that the physician should not have accepted such a limited report. Exercising particular caution also means paying close attention to the quality of independent physicians’ reports. These must show that the case has been examined sufficiently thoroughly. The conclusions must also be sufficiently substantiated. If this is not the case, it is the physician’s responsibility to ask the independent psychiatrist to make a further assessment and/ or amend the report. If this does not lead to a satisfactory result, it is the physician’s responsibility to seek information and advice from other experts in order to substantiate their own findings.
As regards the physician setting aside the independent physician’s negative conclusion, the committee held as follows. If a SCEN physician comes to the conclusion that one or more due care criteria as laid down in the Act have not been complied with, this should prompt the physician to think carefully about whether the euthanasia procedure can go ahead. Although the Act stipulates only that an independent physician must be consulted, not that their consent is required, if the independent physician comes to a negative conclusion the physician must carefully substantiate why they have set that conclusion aside (see the Euthanasia Code 2018, paragraph 3.6).
According to the committee, if a psychiatric patient requests euthanasia, a negative conclusion by the SCEN physician should be given even more weight. Exercising particular caution then requires that the physician must explain to a greater extent than in other cases why they believe all the due care criteria have indeed been complied with. Although it is not a mandatory requirement, it then makes sense to consult a second SCEN physician (preferably one who is also a psychiatrist). In this respect the committee also refers to the above-mentioned guidelines of the Netherlands Psychiatric Association (p. 44 of these guidelines, in Dutch), which state that in the event of a fundamental difference of opinion – and the committee found that this was the case – another independent physician should always be consulted.
The committee found the physician’s arguments for not doing so to be inadequate. The SCEN report was drawn up by an experienced psychiatrist with a considerable track record. The report argued clearly and frankly why in this case the euthanasia procedure should not take place. Despite this, the physician relied on her own opinion, without seeking further assessment. Leaving aside the question as to whether that opinion was correct, the committee found that in the circumstances (including the limited report by the independent expert) the physician should certainly have consulted a second SCEN physician (preferably a psychiatrist) or a second independent expert.
It would then have been possible to establish more clearly whether there was scope to improve the patient’s ability to cope (even if the main diagnosis were untreatable). The argument that further examinations would cause some distress to the patient was, in the eyes of the committee, insufficient reason to refrain from taking that step. The same is true for the argument that the physician did not want to create the impression that she was ‘shopping around’: if anything, approaching a second SCEN physician would in this case have strengthened the physician’s position, as she would have been facilitating assessment of her actions and showing herself willing to have another person take a critical look at her intended course of action.
The committee found that the physician did not act in accordance with the due care criteria laid down in section 2 (1) (b) and (d) of the Act. The other due care criteria were complied with.