2019-79, 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, the physician must also consult an independent expert physician, End-of-Life-Clinic.

The patient, a man in his eighties, was diagnosed with Alzheimer’s disease two years before his death. Despite medication, his condition gradually deteriorated. He was initially cared for at home by his wife.

About a year before his death the patient fell and broke his hip. Following surgery he was disoriented and restless. When he returned home after a course of rehabilitation, his mental condition rapidly deteriorated. When the domestic situation became untenable, about four and a half  months before the patient’s death, he was admitted to a nursing home 

A year before the patient’s death, his general practitioner discussed euthanasia with him on several occasions. At that time, the patient’s request was not immediately relevant. During the discussions about euthanasia after the hip fracture, the patient no longer had any awareness of his illness according to the general practitioner, nor was there an immediately relevant request for euthanasia. The physician did not wish to perform the euthanasia procedure because he considered the request to be too complex. The patient was referred to the End-of-Life Clinic.

He had drawn up an advance directive in 2012 and in 2018. Nobody doubted his decisional competence at the time he drew up the two documents. The physician noticed that the second advance directive been signed when the patient was in hospital. The physician therefore contacted the civil-law notary in whose presence the advance directive had been drawn up to verify whether the patient had been decisionally competent at the time. The civil-law notary confirmed that he had been.

In the first advance directive, the request was formulated as follows:
‘I want every effort – I repeat every effort – to be made to ensure that my wish for euthanasia is complied with if, as a result of dementia (Alzheimer’s):
- I can no longer communicate
- I need help with everyday tasks
- My character changes or I become a different person
- I no longer recognise close family and friends
- I lose my grip on my thoughts and actions

I also want euthanasia to be carried out if dementia (Alzheimer’s) causes humiliation in the form of incontinence, difficult and aggressive behaviour and a loss of personal dignity that is not in keeping with my lifestyle. On no account do I wish to be admitted to a psychogeriatric nursing home.’

In his levenstestament (a legal document that generally combines a lasting power of attorney and an advance directive on medical issues), drawn up a year before his death by the civil-law notary, the request for euthanasia was worded as follows:
‘If I find myself in a situation in which I am suffering without prospect of improvement; and/or in which there is no reasonable prospect of returning to what I would consider a dignified way of living; and/or in which progressive loss of dignity is to be expected, I expressly request my physician to administer or provide to me the substances that will end my life.’ It also stated: ‘I have given this request for euthanasia careful consideration, I have informed myself about it properly and I have signed it in full possession of my mental capacities.’

The physician saw the patient on ten occasions. During the fourth visit it became apparent that the domestic situation was no longer tenable and that the patient would have to be admitted to a nursing home. According to the physician, it was a clear turning point when the patient was admitted to the nursing home. When he was taken there and it became apparent to him that he would have to stay behind, he became angry. In the nursing home he regularly called out ‘I don’t want this!’

When the patient had been at the nursing home for three weeks, the physician visited him there. His suffering was unclear to the physician during this visit. However, his family and care staff did see signs that the patient was suffering. He was said to be restless, especially in the evening. When the physician visited in evening, he saw a very agitated person who was angry and sad when his wife said goodbye. According to the care record, this was a recurring pattern. In addition, the reports of carers showed that the patient would walk around aimlessly all day long, often coming to a standstill in front of objects and walls. He was also very restless at night and began to wander about. He slept little and often vented his anger and frustration on fellow residents. His carers said the patient was often sad. Owing to his lack of communication skills, he could no longer say what he wanted and felt that people did not understand him. This angered him. The patient was given medication for his restlessness but it made him groggy and his compulsion to move increased. He fell down regularly. After a number of months at the nursing home, an acceptable equilibrium had not yet been reached. The patient could no longer communicate, his personality had changed, and he had lost his grip on his thoughts and actions. In addition he was incontinent and dependent on others for his everyday care needs.

Two months before his death, the physician asked the attending elderly-care specialist to report on the patient’s condition and to assess whether there were still options to alleviate his suffering. The attending elderly-care specialist stated that, during the patient’s stay at the nursing home, he had become entirely dependent on others for his everyday care needs and his incontinence had worsened. He also exhibited further cognitive decline.

The physician was satisfied that this suffering was unbearable to the patient and with no prospect of improvement according to prevailing medical opinion. In order to carry out the assessment, the physician had to rely upon non-verbal utterances because the patient could no longer articulate his suffering through speech. According to the physician, the patient’s desperation was visible, audible and palpable. An evaluation of the patient’s suffering carried out by the physician using the framework devised by Kimsma reinforced his conviction that this patient, in the light of his life history and personality, experienced his suffering as unbearable. The physician noted that the situation in which the patient found himself corresponded to his description in his euthanasia directive of what would be unbearable to him. During his final visit, a day before euthanasia was performed, the physician asked the patient whether he wanted euthanasia, in accordance with his wishes, to go ahead. The patient did not respond to this question.

The physician twice consulted an independent physician who was also a SCEN physician. The first independent physician, who was also an elderly-care specialist, saw the patient over two months before his death. When the independent physician visited, verbal communication was not possible. According to the independent physician, the patient was decisionallyincompetent due to the advanced dementia process. The independent physician spoke to the patient’s wife about the course of his illness. The independent physician concluded that this decisionally incompetent person found himself in a situation which – as was apparent from the advance directive which he had frequently discussed with his general practitioner – he had never wanted. According to the independent physician, there were moments when the patient was visibly suffering. He was angry and sad when he was separated from his wife. According to the independent physician, there were no alternative treatments; the patient’s situation was without prospect of improvement. Based on her own observations when she visited the patient, information from the physician and supplementary information from others, the independent physician reached the conclusion that the due care criteria had been satisfied.

The physician then consulted an elderly-care specialist with expertise in advanced dementia. The second independent physician visited the patient twice. During these visits, verbal communication was not possible. According to the independent physician, the patient had lost his grip on his surroundings, had become dependent on care and was increasingly isolated, as a result of which his restlessness had increased. In the opinion of the independent physician, the patient expressed his wish for euthanasia through his behaviour. According to the independent physician, the patient’s world had been disrupted too much in the preceding months for it ever to be restored. There was no longer any way of helping him experience something positive or enabling him to find calm. The second independent physician also concluded that the due care criteria had been complied with.

 In view of the patient’s condition, it was not entirely possible to predict how he would react when the IV cannula was inserted. The physician was convinced that the patient wanted euthanasia and over the entire course of his contact with the patient, the latter had made no verbal utterances or given any physical signs that could be interpreted as going against his advance directives and the wishes he had expressed previously. The physician therefore concluded that any adverse reactions on the part of the patient could not be considered to be signs of an objection to euthanasia, but simply as reactions to the insertion of the IV cannula or other procedures. In anticipation of any such reactions, the physician had drawn up a plan for the euthanasia procedure.

The patient was taken home on the day euthanasia was performed. He allowed the IV cannula to be inserted without any problem. When a physician informed him that he was about to carry out the euthanasia procedure, the patient did not respond.

In the physician’s opinion, everything had been done to make the situation more bearable for the patient. The physician observed that possibly different medication with a greater tranquillising effect could have been tried out and that the patient’s daily routine could have been modified. The physician was convinced however that this would not have provided a solution for the unbearable suffering which the patient referred to in his advance directive and which was also clearly visible.

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. 

It is still possible to comply with 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 and 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 found that the physician had exercised the particular caution referred to above. On this point, the committee noted the following. It had been established that the patient was no longer decisionally competent when the physician became involved in his case. The committee found that, when the patient drew up his advance directive and updated it, there was no reason to believe that he was already decisionally incompetent.

The committee was satisfied on the basis of all the information that when the termination of life was carried out, the circumstances described by the patient in his advance directive indeed existed. The committee found that the physician could be satisfied that the performance of euthanasia was in line with the previous written advance directive and that there were no contraindications: the documents did not show that the patient indicated, in the nursing home or prior to the termination of life at his home, that he did not want the termination of life to go ahead.

During the phase in which the dementia process has advanced so far that the patient is no longer decisionally competent, it must also be plausible that a patient is at that moment suffering unbearably. The committee found that the physician could be satisfied that the patient’s suffering was without prospect of improvement and unbearable to him. The committee noted the following in this respect. It was clear from the file that the physician had studied the patient’s situation carefully. It was apparent from extensive and lengthy observation that, in the nursing home, the patient was constantly visibly anxious, confused, restless, angry and aggressive. Over time the physician saw the situation steadily deteriorate and the suffering increase. Despite attempts to do so in the nursing home, it proved impossible to improve the patient’s situation, making the unbearable nature of the patient’s suffering palpable to the physician. The physician could be satisfied that the patient was suffering unbearably. 

With regard to the requirement that the physician must be satisfied that the patient’s suffering, besides being unbearable, is also without p rospect of improvement, and the requirement that the physician must come to the conclusion together with the patient that there is no reasonable alternative, the committee found that the physician could be satisfied that this was the case. The report by the attending elderly-care specialist listed options for improving the patient’s situation. The list included, among other things, trying medication with a greater tranquillising effect, arranging for the patient to talk to a spiritual counsellor and further optimising the patient’s daily routine. The committee endorsed the physician’s conclusion that the administering of stronger tranquillising medication could not be considered a reasonable alternative (Euthanasia Code 2018, p. 26). The elderly-care specialist did not expand on how the patient’s daily routine might be further optimised. The committee accepted the physician’s view that discussions with a spiritual counsellor would probably have had no impact on someone in an advanced stage of dementia. It also emerged clearly from the documents that staff made great efforts to make the patient’s situation bearable, but this proved impossible. The physician also found support for his conclusion in the medical records of the attending elderly-care specialist and nursing staff and in statements from the patient’s close family and friends.

As regards the due care criterion that there is no reasonable alternative, in principle this is a conclusion that the physician and the patient must arrive at together. According to the legislative history in respect of section 2 (1) of the Act, the due care criteria apply ‘to the greatest extent possible in the given situation’. In other words, the physician must take account of the specific circumstances of the case; for instance, the patient may no longer be capable of communicating or responding to questions. It is therefore important that the physician carefully consider in cases such as this what the patient has written about this matter in his advance directive and what he said when he was still able to communicate.

At the time the physician became involved, the patient was already decisionally incompetent. 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 – as described in the foregoing – there was no reasonable alternative which would end or considerably reduce these circumstances (which constituted the unbearable suffering), the committee found that the physician could be satisfied that this due care criterion, too, was complied with.

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).

The committee noted that the physician consulted two independent expert physicians, who saw the patient and gave a written opinion on whether the due care criteria had been complied with. They both concluded that the due care criteria in the Act had been complied with. The physician thus complied with the due care criterion referred in section 2 (1) (e) of the Act. The committee did observe that the reports drawn up by the two SCEN physicians did not substantiate the conclusion that there were no reasonable alternatives and did not address the alternative treatments suggested by the attending elderly-care specialist. As already indicated above however, the physician himself had already put forward satisfactory arguments that the patient’s suffering was without prospect of improvement and that there were no reasonable alternatives.

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