2017-103, due care criteria not complied with
Non-straightforward notification, advance directive, unbearable suffering without prospect of improvement.
The patient, a woman in her sixties, had been suffering since a decade before her death from forgetfulness, low spirits and feelings of panic. She became increasingly withdrawn. In 2010 she was diagnosed with Alzheimer’s, a progressive disease. In late 2013 the patient was admitted to a care home, where she resided in a small-scale care unit, because she could no longer cope at home.
By that time, she no longer had any insight into her situation. The patient had always said to her family that she did not want to be admitted to a nursing home. In the last six months before her death, her condition deteriorated rapidly.
According to the physician, the patient’s suffering was characterised by restlessness and regular shouting and screaming. As a result she could no longer stay in the group.
The patient often resisted activities of daily living, including having to be changed repeatedly because of her urinary and faecal incontinence. The patient was now confined to a wheelchair, which meant she could no longer remove herself from situations she experienced as unpleasant. She became increasingly trapped in her own body. All she could do was sit in a chair; she could no longer even eat independently.
She would not always let people come near her and sometimes she would become angry. This was a serious problem for her carers; she would hit them, spill food and drink, kick them, and grab them and refuse to let go. There were crying fits and a lot of anger.
According to the physician, the patient’s underlying suffering dominated her life. Like the family and the carers, the physician was convinced, on the basis of the patient’s non-verbal utterances, that her suffering was unbearable to her and without prospect of improvement according to prevailing medical opinion.
According to the patient’s children, her first response on learning of her Alzheimer’s diagnosis had been, ‘Oh no, this is not what I want’. They had often talked about dementia with her, because several members of their family had ended up in a nursing home because of dementia. Their mother thought that was terrible. She had always said that if she ended up with dementia and had to go into a nursing home, she would not want to go on; she would want to die.
The patient had discussed euthanasia previously with her general practitioner, who treated her until she went into the care home in 2013. In 2011 she had drawn up an advance directive and handed it to her general practitioner. The patient was still decisionally competent at the time.
The patient’s advance directive included the following passages: [...] that I want to prevent both physically and mentally unbearable suffering for myself in all circumstances. As I have been diagnosed with dementia (Alzheimer’s) and COPD, both my mental and physical suffering could put me in a situation that is unbearable to me. In this advance directive, I want to record what I do not want to happen. I am competent to do this now. If my mental wellbeing deteriorates to that degree, I want my specialist [...] to be involved, to reaffirm my wishes as set out in this advance directive. [....] I am completely opposed to being admitted to a nursing home. If that happens I want active euthanasia to be performed. It is important to me to be able to die what I consider a dignified death and if the above-mentioned points are complied with, I trust that this will be possible.
When she handed over her advance directive in 2011, the patient also asked her general practitioner directly to perform euthanasia. However, the general practitioner refused to grant her request. After this, the patient became increasingly withdrawn and it became difficult for her family to make contact with her. Broaching the subject again was not considered, because the general practitioner’s refusal had been so adamant.
When she was staying in the care home, the children decided to discuss her wish for euthanasia with the general practitioner affiliated with the care home. Around four months before the patient’s death, this general practitioner contacted the End-of-Life Clinic (SLK) for a second opinion.
As the general practitioner did not want to perform euthanasia, the SLK physician took over the case. She visited the patient four times and observed her at different times during the day. She was also informed extensively by the family and the carers.
The physician consulted an independent physician who was also a SCEN physician. The independent physician, an elderly-care specialist, saw the patient more than a month before euthanasia was performed, after he had been told in detail about the patient’s situation by the physician and had examined her medical records.
The independent physician concluded that the patient was not suffering unbearably, and that the advance directive was not explicit enough. In his opinion, therefore, the due care criteria had not been complied with.
Following the outcome of the SCEN consultation, the physician considered the independent physician’s arguments seriously, discussed them with him in person, and postponed the euthanasia procedure in order to think about it and consult her colleagues at the SLK. The physician decided not to ask a second independent physician for a new assessment, but asked a colleague at the SLK – a clinical geriatrician and SCEN physician – to observe the patient.
The physician stated that she wanted to reflect on the case together with a colleague who had experience with this type of patient and whom she knew to be critically minded. This colleague visited the patient around a week and a half before her death. The physician had informed the colleague briefly in person about the patient.
The colleague was of the opinion that it was not possible to gain insight into the patient’s thoughts or feelings other than by interpreting her non-verbal behaviour, which in itself appeared largely to be driven automatically by external stimuli. Little could be seen of what was going on inside. According to the colleague, in this humiliating situation the patient made a pitiful impression.
The physician’s substantiation of her decision to perform euthanasia despite the independent physician’s negative assessment included the following points:
- The degree of suffering may vary from one moment to the next. I saw the patient more frequently than the SCEN physician did. My assessment of the patient’s suffering was also confirmed by the observations of the care staff, who saw the patient even more often, and the family.
- The law requires that the physician be satisfied that the patient’s suffering is unbearable, with no prospect of improvement. ‘Physician’ refers to the physician who performs euthanasia, not the SCEN physician. I was indeed satisfied that the patient was suffering unbearably.
- When assessing a patient’s suffering, there can always be personal differences in interpretation, as is also clear from the literature [...].
When asked about how she determined that the patient was suffering unbearably, the physician explained that it was mainly through her observations that she had reached the conclusion that the patient was suffering unbearably. She observed and filmed the patient and later also watched footage taken of the patient receiving care.
One of the physician’s observations was that the patient would be lying calmly in her bed, and then go completely rigid when the care staff came to help her. The SLK nurse added that the patient’s mood could change suddenly and that she could become very angry. When asked about it, the physician indicated that she interpreted the patient’s anger as unbearable suffering. The physician was well aware that it always remains a question of interpretation; patients with dementia are often angry. The physician took account of the patient’s prior history in her assessment.
When assessing whether the patient was suffering unbearably, the physician also took into account the fact that she had indicated very clearly that she was totally opposed to being admitted to a nursing home because of her dementia. The situation in which she found herself was exactly what she did not want to happen. According to the physician, the patient was suffering without prospect of improvement and there was no reasonable alternative. The care staff were capable. They knew the patient’s situation and knew how to deal with it.
The physician was aware that she and the independent physician held opposing views. When asked about how she interpreted the independent physician’s report, the physician answered that the independent physician did not take the views of the family and the care staff into account.
The physician disagreed with that. After all, they knew the patient best. The physician indicated that the independent physician could have decided to visit the patient a second time. The physician pointed out that her colleague supported her view on the unbearable nature of the patient’s suffering and that the colleague had said so to her.
According to the physician, her colleague’s report was completely clear and the phrase ‘a pitiful impression’ was sufficiently clear. If the colleague had not shared her view, the physician would not have performed euthanasia. The physician saw no added value in asking a second independent physician for an assessment.
Asked why the patient’s explicit wish for her attending specialist to be involved in the process in order to reaffirm her wishes, as indicated in her advance directive, was not carried out, the physician answered that she had tried to trace the attending specialist but that he no longer worked at the place where he had treated the patient.
The committee noted the following as regards the request being voluntary and well considered. According to the patient’s family members, immediately after she received the Alzheimer’s diagnosis, she had said that this was not what she wanted. She also indicated this in her advance directive. It is beyond dispute that the patient was able to make a reasonable appraisal of her interests when she drew up her advance directive. The question is, however, whether this advance directive – which was several years old and had not been recently updated orally or in writing – was still fully valid.
As mentioned on page 36 of the Euthanasia Code 2018, the Act does not limit the validity of an advance directive, nor does it require the directive to be regularly updated. However, the older the directive, the more doubt there may be as to whether it still reflects the patient’s actual wishes.
As the patient had not reaffirmed her advance directive orally or in writing since handing it to her general practitioner in 2011, the question is whether the circumstances set out in the advance directive were described specifically enough to constitute a voluntary and wellconsidered request.
Page 43 of the Euthanasia Code 2018 notes that 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 still decisionally competent. The directive must be clear, and evidently applicable to the current situation.
The physician and the independent physician must consider the entire disease process and any other specific circumstances when assessing the request. They must interpret the patient’s behaviour and utterances, both during the disease process and shortly before euthanasia is performed. At that moment the physician must be satisfied that carrying out euthanasia is in line with the patient’s advance directive, and that there are no contraindications (such as clear signs that the patient no longer wishes his life to be terminated).
The committee established that the patient indicated in her advance directive that she wanted in all circumstances to prevent both physically and mentally unbearable suffering for herself and that she wanted euthanasia if she had to go into a nursing home. She also stated that she wanted to die with dignity. The committee acknowledged that there may be differences in insight regarding how detailed and specific the description in the advance directive of the circumstances in which the patient wants euthanasia must be, and that views may differ on whether the advance directive was clear enough in the present case.
In its assessment of whether there was a voluntary and well-considered request, the committee took particular account of the fact that the patient did not reaffirm the advance directive, drawn up in 2011, in the period before her admission to the care home, neither to her family nor to her then general practitioner and her specialist, and that the physician never discussed her wish for euthanasia with her.
Bearing all of this in mind, the committee considered the content of the advance directive to be insufficient grounds for the physician to be reasonably able to conclude that it expressed the patient’s wishes persisting up to the time when she became decisionally incompetent.
Another key factor is the fact that the physician did not seek contact with the patient’s former general practitioner and her specialist in order to gain an idea of the patient’s wishes. The committee therefore found that the physician could not reasonably conclude that in this case there was a voluntary and well-considered request from the patient, as described in section 2 (2) of the Act.
As regards the due care criteria that the physician must be satisfied that the patient is suffering unbearably and without prospect of improvement and that there must be no reasonable alternative, the committee found as follows. To assess whether the patient experienced unbearable suffering, both the physician and the independent physician had to resort to interpretation of her behaviour and her utterances, since she had become decisionally incompetent.
The physician indicated that she came to the conclusion that the patient was suffering unbearably mainly on the basis of what she had observed. When assessing whether the patient’s suffering was unbearable, the physician also took into account the fact that the patient had indicated very clearly in her advance directive that she was totally opposed to being admitted to a nursing home.
However, the independent physician concluded, on the basis of his visit to the patient and after studying the available video footage, that she was not suffering unbearably, because his observations and the footage showed the opposite to what was being said.
As the physician and the independent physician held opposing views on whether the patient was suffering unbearably, the committee decided to study the video footage. The committee was of the opinion that the footage did not provide unequivocal guidance supporting the physician’s assessment that the patient was suffering unbearably. Moreover, the advance directive was rather cursory in its description of what suffering would consist of.
The fact that the patient indicated in her advance directive that she wanted euthanasia if she had to go into a nursing home was an insufficient basis for the assumption that she was suffering unbearably. It has to be plausible that the patient actually experienced unbearable suffering, both during the disease process and shortly before euthanasia was performed.
As regards the consultation, the committee noted that physicians may disregard a negative assessment by the independent physician and proceed with euthanasia. According to the Act the physician is responsible, but will have to explain clearly why he or she disregarded the independent physician’s assessment (KNMG guideline Goede steun en consultatie bij euthanasie [‘Good euthanasia support and independent assessment’], para 23).
Page 28 of the Euthanasia Code 2018 notes in this respect that the physician must take the independent physician’s opinion very seriously. However, it is not the latter’s task to give the physician ‘permission’. If there is a difference of opinion between the two, the physician may nevertheless decide to grant the patient’s request, but will have to be able to explain that decision to the committee.
Another option if there is such a difference of opinion is for the physician to contact a second independent physician who has specific expertise on the issue at hand. In the present case, however, the physician saw no added value in asking a second independent physician for an assessment. Instead, she consulted a colleague at the SLK, a physician.
In the committee’s view, this physician cannot be considered an independent physician within the meaning of the Act. The physician explained extensively, both orally and in writing, why she proceeded with euthanasia despite the independent physician’s negative assessment. She stated, among other things, that the law requires that the physician – rather than the SCEN physician – be satisfied that the patient’s suffering is unbearable, with no prospect of improvement.
The committee pointed out that pursuant to section 2 (1) (e) of the Act, the independent physician consulted by the physician must without question give his opinion as to whether in the case at hand the due care criteria laid down in section 2 (1) (a) to (d) of the Act have been complied with, including the requirement of unbearable suffering without prospect of improvement.
In her explanation the physician indicated, among other things, that she had decided to proceed with euthanasia despite the independent physician’s negative assessment because the SLK colleague she consulted shared her view that the patient was suffering unbearably. If the colleague had not shared her view, the physician would not have performed euthanasia.
However, the committee found that, besides the fact that the colleague could not be considered an independent physician, the report drawn up by the colleague was very brief and did not explain sufficiently why the colleague thought the patient was experiencing unbearable suffering.
The committee found that the physician had not explained sufficiently why the patient’s behaviour as observed by her could be considered to constitute unbearable suffering. The physician indicated that she thought the care staff were capable, and that they knew the patient’s situation and knew how to deal with it.
According to the physician the care staff were not incompetent, or less competent than the staff of a regular nursing home would be. However, the patient was staying in a small-scale, secure unit of a care home, not in a nursing home equipped for caring for patients in an advanced stage of dementia. The patient’s care needs exceeded the level of the care home and made it perfectly reasonable to insist that she be transferred to a specialised institution that was equipped to provide the high level of care required.
In the committee’s opinion, an option worth considering would have been to transfer the patient to a form of care that was suited to her, where a different approach/protocol/treatment could have achieved some improvement in her situation.
On the basis of the above considerations, the committee found that the physician could not be satisfied that the patient was suffering without prospect of improvement and that there was no reasonable alternative.