2019-119, due care criteria complied with

Non-straightforward notification, full report of findings,  patient with advanced dementia, advance directive, in the event of a euthanasia request in this phase, in addition to consulting a regular independent physician, the physician must also consult another independent physician who is an expert in the field, End-of-Life Clinic.

The patient, a man in his seventies, had been having increasing cognitive problems that started about six years before his death. Three years before his death, he had to be admitted to hospital with pneumonia. While in hospital, he experienced delirium, after which it became clear that he was no longer able to function at the same level as before. Shortly after, he was diagnosed with Alzheimer’s disease.

Three years before his death, the patient had drawn up an advance directive. It included the following:
‘- If, for any reason, I end up in a mental or physical state that offers no real prospect of returning to a reasonable and dignified life, I do not wish to continue living and wish to die quickly and peacefully.
- In the event that as a result of (further) treatment being withheld, I will not die quickly and peacefully, I urgently request that my attending physician fulfil my wish to die by administering to me the substances that will bring about a mild death or by having me ingest those substances under his/her supervision. I consider at least the following to comprise the above-mentioned state:
- a state of long-term terminal suffering;
- unavoidable loss of dignity;
- any mental or physical state that I may later specify or that may befall me, with consequences that are clearly unacceptable to me;
- in the event that, in the above-mentioned state, I am clearly still able to express my wishes, I request that the attending physician ask me to
confirm this directive. Should I not be able to do so, this directive must be considered to contain my express wishes.’

After he was diagnosed the patient had had several conversations with his general practitioner about euthanasia. He said, among other things, that he was afraid of losing his dignity and becoming aggressive. These conversations took place up to a year before his death. In that final year, the patient did not bring up the subject of his wish for euthanasia, nor did the general practitioner ask him about it.

About a year before his death the patient was admitted to a nursing home because his care needs were increasing and he was very argumentative. In the beginning all went well in the nursing home. However, because his illness was becoming more serious he began to lose control of his situation, and this caused feelings of frustration and fear. The patient’s ability to communicate deteriorated and eventually he could hardly communicate at all. He was very agitated every day. In addition he was increasingly aggressive towards other residents and it was almost impossible to distract him. His outbursts of aggression increased. Attempts at improvement were hampered by his inability to speak (aphasia) and communication problems, and his behaviour remained the same. The use of medication to suppress his symptoms made him extremely lethargic, but any reduction in the medication caused his symptoms to flare up. Various other means besides medication were used to improve the situation. For instance, after several falls he slept in an enclosed safety bed, but even then he was sometimes agitated.

The patient’s suffering consisted of loss of control over his situation and of the ability to communicate properly with other people, and the related consequences: anxiety and anger. There were periods when he hardly slept for nights on end due to agitation. As a result he became fatigued. He sometimes compulsively cleaned the floor and it was almost impossible to stop him from doing it. In his confusion he also showed distressing behaviour, such as soiling his room, crawling on the floor and aggression towards the care staff and other residents. When the patient was calm, he was regularly completely apathetic and withdrawn.

When the patient’s situation in the nursing home continued to deteriorate and his condition worsened substantially, the members of his family discussed the advance directive. His wife spoke about the advance directive with the attending elderly care specialist, but the latter considered the request to be too complex. The patient’s wife then contacted the general practitioner. The general practitioner brought in a euthanasia counsellor from the End-of-Life Clinic (SLK) and visited the patient in the nursing home. In the end the general practitioner also refused to carry out the request for euthanasia, because he considered it too complex. In consultation with the euthanasia counsellor, the general practitioner transferred the request to the SLK. The general practitioner remained closely involved in the SLK euthanasia process.

From the moment the SLK physician became involved, the patient was completely decisionally incompetent. The physician visited the patient four times over a period of five months. During each visit the physician tried to make contact with the patient. The patient responded to the attempts, but it was impossible to have a conversation. The physician spoke to the patient’s wife about the fact that although the advance directive was not particularly specific, it was very comprehensive. She said that her husband’s parents had also suffered from Alzheimer’s disease and their decline had been a terrible experience for him. He had always been adamant that he did not want that to happen to him.

An observation period was agreed with the family. During that period, all those involved saw loss of dignity on many occasions. This mainly consisted of agitation, incontinence, anxiety and aggression, whereby the patient could not be managed and interventions did not help. After the observation period it was clear to the physician that the patient was suffering unbearably in the way he had described and intended in his advance directive.

More than three months before the termination of life, the physician asked an independent psychiatrist to assess the patient’s suffering. This psychiatrist visited the patient at the nursing home. During his visit the psychiatrist concluded that it was impossible to have a conversation with the patient. He therefore spoke with the patient’s wife, children and children-in-law. The psychiatrist also spoke on the phone with the general practitioner. On the basis of his visit and the conversations with the patient’s family and the general practitioner, the independent psychiatrist concluded that the anxiety and agitation were being treated correctly.

Taking into account the patient’s personality, his medical history and the written records of his wishes, it was not necessary for the independent psychiatrist to hear an oral account from the patient of his suffering. In his opinion it could not be established objectively and convincingly that the patient’s suffering was unbearable. On the other hand, when the patient was agitated, a state that defined a large part of his day, it could be said that his suffering was unbearable. At those times there was clearly an unavoidable loss of dignity. The psychiatrist did not doubt that the patient’s situation completely matched what he had described as unbearable when he was still decisionally competent.

The physician consulted an independent physician who was also a SCEN physician and an elderly care specialist. The independent physician saw the patient about a month and a half before his death. During the visit the independent physician made several attempts to start a conversation with the patient. The patient looked at the independent physician, but did not respond to his questions. According to the independent physician, the patient was decisionally incompetent due to the advanced dementia process.

The independent physician found it difficult to gain an impression of the patient’s mood and suffering without any communication. He was unable to establish any impression of positive affect on the part of the patient and also noted the lack of expressions of enjoyment or pleasure. According to the independent physician, the patient’s situation evidently fell within the boundaries set in the advance directive. No improvement was to be expected; the loss of dignity would only continue. In his report the independent physician concluded that the due care criteria had been complied with.

Given the patient’s situation it was difficult to predict his reaction to various procedures necessary to carry out the termination of life on request. According to the physician, during the entire assessment process there were no verbal or physical signals that could be interpreted as being contrary to the patient’s advance directive. The physician therefore concluded that any contrary reactions on the part of the patient could not be considered to be signs of objection to the termination of his life, but as reactions to the insertion of an IV cannula or to other procedures. To be prepared for all eventualities, the physician had drawn up a detailed plan for the euthanasia procedure. It stated, for instance, that the procedure would not be carried out if the patient were to expressly say or make it clear that he did not want euthanasia. It also stated that the patient would be given premedication to prevent him from reacting negatively to the sensation of the IV cannula being inserted. If the patient did not accept the premedication, the physician would make a second attempt some time later. And if the patient were to refuse it again, the physician would discontinue the procedure at that point.

The procedure was carried out at the nursing home. The SLK nurse explained to the patient that they were going to give him substances that would end his life and that he would first be given medication to calm him. The patient then ingested the medication. After he had calmly lain on the bed for some time, next to his wife, the patient wanted to get up. Attempts were made to keep him on the bed, which made him agitated. This behaviour was comparable to how he regularly behaved in the nursing home. The patient then briefly walked around his room, with assistance, after which he lay down again. Nonetheless the patient’s agitation continued and it was decided to give him a sedative (Dormicum) and morphine. Shortly after, the patient fell asleep and the physician administered the euthanatics.

The committee noted that with regard to patients with dementia the physician is required to exercise particular caution, especially with regard to the statutory due care criteria concerning a voluntary and well-considered request, unbearable suffering without prospect of improvement and absence of reasonable alternatives. When euthanasia is to be performed in the late stages of dementia, the physician must consult both a regular independent physician and a physician specialised in dementia (Euthanasia Code 2018, p. 45).

It is still possible to grant a request for euthanasia at the stage where dementia has progressed to such an extent that the patient is no longer decisionally competent and is no longer able to communicate (or is able to communicate only by simple utterances or gestures), provided the patient drew up an advance directive when he was still decisionally competent (Euthanasia Code 2018, pp. 44-45). Section 2 (2) of the Act states that an advance directive can replace an oral request and that the due care criteria mentioned in section 2 (1) of the Act apply mutatis mutandis. The directive must be clear, and evidently applicable to the current situation. The committee noted the following in this respect. It had been established that the patient was no longer decisionally competent when the physician became involved in his case. On the basis of the documents and the physician’s oral explanation, the committee found that at the time when the patient wrote his advance directive there was no reason to believe he was already decisionally incompetent.

The committee considered the content of the advance directive at length. After all, the directive must be clear, and evidently applicable to the current situation. On the basis of all the information, the committee was satisfied that when the termination of life on request was carried out, the circumstances described by the patient in his advance directive of 2016 indeed existed, in particular the ‘unavoidable loss of dignity’. From the information given by the patient’s general practitioner, family and care staff the physician was able to deduce what the patient meant by ‘unavoidable loss of dignity’. The  committee took into consideration the fact that both the independent physician and the independent psychiatrist consulted were satisfied that the patient’s existing situation was the situation that the patient had referred to in his advance directive.

According to the Euthanasia Code 2018 (p. 45), the physician must ascertain whether a decisionally incompetent patient shows any clear signs that he does not wish his life to be terminated. The physician made several – fruitless – attempts to make contact with the patient to ascertain whether he was able to indicate, verbally or non-verbally, that he no longer wanted euthanasia. It was clear from the file that there were no such indications.

In view of the above, the physician was able to conclude that carrying out the euthanasia procedure was in accordance with the patient’s advance directive and not contrary to his utterances. The committee found that the physician could be satisfied that the patient’s request was voluntary and well considered and that the physician exercised the above-mentioned particular caution.

During the phase in which the dementia process has advanced so far that the patient is no longer decisionally competent, it must be plausible that the patient is at that moment suffering unbearably. In reaching its conclusion, the committee took account of the fact that it was clear from the file and the physician’s oral explanation that the physician had studied the patient’s situation carefully. The physician ascertained step by step whether the patient was currently suffering unbearably.

The committee found that the physician exercised particular caution and that the physician could be satisfied that the patient’s suffering was unbearable and without prospect of improvement. As regards the due care criterion that requires that there be no reasonable alternative, the committee considered that in principle this is a conclusion that the physician and the patient must arrive at together (Euthanasia Code 2018, p. 25). Furthermore, in view of the legislative history, the due care criterion applies ‘to the greatest extent possible in the given situation’. The committee noted the following in this respect. In the present case it was important that the physician had carefully considered what the patient wrote about this matter in his advance directive and what he said when he was still able to communicate. When the physician became involved with the patient’s case the patient was already decisionally incompetent and, as became clear to the committee on the basis of the documents and the oral explanation, communication with him on this matter was no longer possible, despite various attempts. The documents showed that the only way to treat the patient’s suffering was to administer so much sedative medication that he became extremely lethargic. The committee found that administering more sedative medication could not be considered a reasonable alternative (Euthanasia Code 2018, p. 25). On the basis of what the patient wrote in his advance directive concerning the circumstances in which he wanted euthanasia, and given the fact that the physician could be satisfied that there was no reasonable alternative which would remove or considerably reduce these circumstances (which constituted his unbearable suffering), the committee found that the physician exercised particular caution and that he could be satisfied that this due care criterion, too, was complied with.

The committee found that all the due care criteria had been complied with.