2014-35, general practitioner, dementia, voluntary and well-considered request, independent assessment

KEY POINTS: dementia, role of the advance directive

The patient, a woman in her seventies, suffered from Alzheimer’s disease. The physician and the patient had repeatedly discussed euthanasia ever since she was diagnosed. The patient had drawn up a detailed and updated advance directive, with a provision on dementia. Right until the end she was able to express her euthanasia request to the physician, though not necessarily in words. The patient’s suffering as observed by the physician matched what she had previously described orally and in the advance directive as unbearable to her. The patient could not express her request orally to the independent physician, but the independent physician was able to rely on the advance directive. The physician could be satisfied that the patient’s request was voluntary and well-considered, and that her suffering was unbearable without prospect of improvement.

More than a year before her death, the patient, a woman in her seventies, was diagnosed with Alzheimer’s disease. Her condition was incurable. She could only be treated palliatively. She was given medication. The patient and her family were supported by a dementia case  manager (dementia case managers give professional advice and information and provide support to dementia patients and their families). The patient’s cognitive and motor skills deteriorated rapidly. Two months before her death, the patient began receiving personal care at home. At that time the patient also started to go to day care.

The patient’s suffering consisted of the fact that she was no longer able to function independently and needed help with everything. She had always been an independent person and the loss of control over her life made her very sad. When day care and home care became necessary, the patient had had enough. She had seen people around her become incapacitated as a result of Alzheimer’s disease and she did not want to go through that process herself. The physician had known the patient for years and, partly in view of the patient’s personality before her illness, was satisfied that the patient’s suffering was unbearable to her. The patient’s suffering was without prospect of improvement according to prevailing medical opinion.

The patient had discussed euthanasia with the physician before. Around 10 months before the termination of life was performed, the patient handed the physician an advance directive, including a provision on dementia.

A month before her death, the patient asked the physician to actually perform euthanasia. When speaking to the physician, the patient proved to have an understanding of her illness. She substantiated her request for euthanasia with reasons. The patient subsequently repeated her request to the physician on several occasions.

The physician was satisfied that the patient understood what euthanasia entailed, right up to the end, and that termination of her life was her express wish.

The physician consulted two independent physicians who were general practitioners and independent SCEN physicians. The first  independent physician saw the patient two months before the termination of life was performed, after he had been informed of the patient’s situation by the physician and had examined her medical records. At that time the patient had not yet requested that euthanasia be performed. In the opinion of the first independent physician, assessment of compliance with the due care criteria was not yet necessary.

The second independent physician saw the patient a month before the termination of life was performed, after she had been informed of the patient’s situation by the physician and had examined her medical records. In her report the independent physician gave a summary of the patient’s medical history and the nature of her suffering. The second independent physician concluded that the patient understood what euthanasia entailed and that she had requested euthanasia because she had dementia. The independent physician had doubts, however, as to the patient’s decisional competence in relation to her current wish to die. The patient was unable to consistently express at what moment in time she wanted euthanasia to be performed. In addition, her understanding of her illness varied depending on the degree of fatigue or agitation and the phase of the disease. The independent physician advised the physician to consult a psychogeriatric physician to have the patient’s decisional competence assessed.

Three days after the second independent physician’s visit, a psychogeriatric physician visited the patient. According to the psychogeriatric physician the patient understood what euthanasia was and could say that a situation could arise in which she would request euthanasia. The patient was unable to specify what that situation would be. When her children talked about accepting home care and day care, however, she rejected this idea with vehemence and anger. The patient did not make a concrete request for euthanasia and could not remember having done so previously. She did say, however, that there were times when she thought life was no longer worth living and she would rather be dead. She could imagine requesting euthanasia one day.

Partly on the basis of the findings of the psychogeriatric physician, the second independent physician concluded that due to her loss of any concept of time the patient was no longer able to formulate a specific moment when the termination of life procedure was to be carried out. According to the second independent physician, the well-documented advance directive could replace the patient’s oral consent. The independent physician concluded, partly on the basis of her interview with the patient, that the due care criteria had been met.

From the notification, it was insufficiently clear to the committee how the physician had ascertained that the patient’s suffering was unbearable to her at the time of the termination of life. The committee also had questions about the voluntary and well-considered nature of the patient’s request, partly in view of what the psychogeriatric physician and the SCEN physicians said in their reports.

The physician gave an oral explanation, which included the following. The patient was an upper middle class lady who knew exactly what she did and did not want. After she was diagnosed it was already clear to the physician that she would at some point request euthanasia. The physician said that the complicating factor in this patient’s case was the fact that at the end she increasingly lost her sense of time. Her wish for euthanasia was clear, but it was not always clear at what moment she wanted her life to be terminated. On a good day she would know when her birthday was and say that she wanted to die on her birthday. On a bad day she would be confused and unable to express this. Moreover, the patient tended to put on a brave face in front of strangers. In the end, the physician found the case to be very clear and was satisfied that the due care criteria had been complied with.

A number of issues were still insufficiently clear to the committee after reading the file and hearing the physician’s oral explanation. For instance, the committee wanted to ask the second independent physician some questions about her findings based on her second visit to the patient, at which the physician was also present. In particular, the committee wanted to hear from the second independent physician what her opinion was, after the second visit, regarding the patient’s decisional competence, the voluntary and well-considered nature of the request and the unbearable nature of her suffering.

The independent physician gave an oral explanation, which included the following. The committee had noticed in the patient’s medical record that the independent physician had visited the patient together with another SCEN physician. This was not apparent from the independent physician’s report. When asked about the matter, the independent physician explained that the SCEN physician who had accompanied her worked at the same practice as she did. Although the independent physician had been a SCEN physician for a long time, she had never before had to assess compliance with the due care criteria for a patient with dementia. She wanted to exercise the greatest possible care and she felt supported by the presence of her colleague, who had specific expertise on euthanasia and dementia. The colleague did not take part in the conversation with the patient, but the independent physician and her colleague did discuss the case afterwards. The independent physician had not reported this course of events because she did not think it was relevant to the report. In the end the independent physician based her findings on the conversation with the patient, the conversation with the physician, the medical file, the assessment by the psychogeriatric physician and the patient’s advance directive. The provision on dementia (drawn up 10 months before the patient’s death) clearly stated what the patient absolutely did not want and what would be unbearable suffering for her. The independent physician was told that at that point the patient was already losing her sense of time. The independent physician could see that the patient was suffering, while the unbearable nature of the suffering was clear to her in part from the way the whole process had gone. The patient’s situation matched the situation she had described in her advance directive as never wanting to experience. Her dependence and the loss of autonomy formed the key components of the unbearable suffering. What contributed to the unbearable nature of the suffering was the fear of future suffering; her symptoms were only going to get worse.

The committee initially questioned how the physician had become convinced that the patient’s request for euthanasia was voluntary and well-considered and that she was suffering unbearably. It was clear from the file that at the end the patient was no longer able to properly express and substantiate her request orally, partly due to her lack of a sense of time caused by her illness. The oral explanations by the physician and the second independent physician made the course of events clear to the committee. The voluntary and well-considered nature of the request was mainly clear from the fact that the physician and the patient had discussed it from the moment she was diagnosed. The physician documented this process carefully in the patient’s medical record. Moreover, at an earlier stage the patient had signed and handed over a detailed advance directive to the physician. The physician also said that the patient was able to indicate her request to the physician right to the last moment, though not necessarily in words. According to the physician this is not uncommon in patients with dementia.
Under stress and social pressure, and as a result of fluctuations in the severity of symptoms, their decisional competence and/or communication skills may vary. On several occasions the physician saw the patient become angry and distressed when she realised that she had lost her autonomy and become dependent. That suffering matched the suffering that the patient had previously expressly indicated, both orally and in the advance directive, as being unbearable to her.

The independent physician based her findings on her own observations during her interview with the patient, but also on the entire process from the time of diagnosis, her knowledge of which was based on the medical records and conversations with the people involved. The independent physician felt she was supported by the psychogeriatric physician’s findings.
Although the patient could not express her request orally to the independent physician, the independent physician was able to rely on the patient’s advance directive in this case. The advance directive included the patient’s name, was dated and signed and had been updated and discussed with the physician regularly. It stated clearly what the patient would consider to be unbearable suffering.