2015-107, general practitioner, dementia, voluntary and well-considered request, unbearable suffering without prospect of improvement, no reasonable alternative

KEY POINTS: advanced dementia, role of the advance directive

A woman with Alzheimer’s disease was suffering unbearably from cognitive deterioration, impaired practical, executive and phatic functioning, and growing dependence. When admission to a nursing home seemed inevitable, she wanted euthanasia. There was an updated advance directive. The physician affiliated with the End-of-Life Clinic (SLK) followed the patient for a long period and consulted a geriatrician and two independent physicians. It was clear to the second independent physician, who was an elderly-care specialist, that the patient’s wish for euthanasia was current. The physician could be satisfied that the patient’s request was voluntary and well-considered, that her suffering was unbearable, and that there was no reasonable alternative.

Around three years before her death, the patient, a woman in her seventies, was diagnosed with dementia (Alzheimer’s disease). The patient refused day care, a case manager and check-ups by the geriatrician.

The patient’s suffering consisted of cognitive deterioration, impaired phatic, practical and executive functioning, loss of control over her thoughts and actions, and growing dependence on her husband’s care. One of her parents had had dementia and had gone into a nursing home, where they had mostly sat crying. The patient had always said that she thought this was degrading and humiliating, that she would never want to be in that situation of dependence and sadness herself, and that she never wanted to go into a nursing home. Because her husband could no longer care for her properly, she had been assessed as requiring nursing home care and admission was imminent. She was suffering unbearably from the absence of any prospect of improvement in her situation, from fear and uncertainty, and aversion to experiencing a process of deterioration like her parent’s and to being taken into a nursing home.

The patient had discussed euthanasia with her general practitioner before. As her general practitioner could not comply with her euthanasia request, she contacted the End-of-Life Clinic (SLK). The physician affiliated with the SLK was in contact with the patient regarding her wish for euthanasia for more than two and a half years. She visited the patient several times and maintained email contact with the patient’s husband.

The physician consulted a geriatrician, who examined the patient more than a month before her death to assess her decisional competence in relation to her wish for euthanasia. The geriatrician established that the patient was in an advanced stage of dementia and that there were no signs of an underlying mood disorder. However, she was unable to form a judgment on the patient’s decisional competence in relation to her wish for euthanasia, because at no point did the patient spontaneously express a desire to die.

Three and a half weeks before her death, the patient asked the physician to perform the procedure to terminate her life soon. Her husband could no longer care for her properly and as a result the patient would have to go into a nursing home. She indicated that she did not want this; in such circumstances she wanted to die. The physician found that the patient was decisionally competent and the request was voluntary and well-considered.

The physician consulted two independent physicians who were also SCEN physicians. The first visited the patient three weeks before the termination of life was performed.

According to the first independent physician, the patient showed symptoms of an advanced stage of dementia. Her request for euthanasia in the event that she would have to go into a nursing home proved consistent and she was able to substantiate it. The patient was equally consistent in her opinion that she did not want to request euthanasia at that point in time. The independent physician concluded, partly on the basis of his interview with the patient, that the due care criteria had not been met because she did not have a current wish for euthanasia. He advised the physician to consult a SCEN physician with more specific expertise and contacted a colleague in his peer supervision group, an elderly-care specialist, who was willing to assess the patient soon after. The physician followed his advice.

The second independent physician, an elderly-care specialist, visited the patient 11 days before the procedure to terminate her life was performed, after she had been told about the patient’s situation by the physician and had examined her medical records. According to this independent physician, the patient indicated that she kept losing things and that she needed more and more help; this caused her great distress. When the independent physician and the patient subsequently talked about the future, the independent physician said that with dementia – the patient was familiar with the word – the expectation was that it would only get worse: it was a brain disease with no prospect of improvement. At that moment, the patient spontaneously said ‘But I’ve had enough’ and ‘I don’t want to go on’. When asked by the independent physician what she’d had enough of, she said ‘Everything, all the things I can’t do anymore, more and more things’. When asked what she meant when she said she did not want to go on, she said ‘I want to die’. When the independent physician repeated the question, asking if she wanted to die now, she replied ‘Yes, I want to die’. She said these things forcefully, with conviction and spontaneously, without any contribution from her husband. It was clear that her suffering was severe and that ‘wanting to die’ was now a current reality for her.

The independent physician was satisfied that the request came from the patient herself, also in view of the fact that she expressed her desire to die with conviction and on her own initiative during the interview. The independent physician found the request to be wellconsidered, in view of the previously documented interviews and the long-term guidance she had sought and received from the physician.

The second independent physician concluded, partly on the basis of her interview with the patient, that the due care criteria had been met.

The physician performed the procedure for assisted suicide. The patient took the beaker with the barbiturate potion from the physician and drank it, even though it could be seen that she did not like the taste.

The committee noted the following in connection with the request being voluntary and well-considered. The file contained the patient’s advance directive, with a special clause on ‘dementia‘, which had been signed in August 2009 and reaffirmed several times since then.

In January 2013, eight months before she was diagnosed with Alzheimer’s disease, the patient drew up an advance directive, in which she stated that the process of dementia in one of her parents had particularly affected her, was never out of her mind and was of great influence on her opinions on growing old and being old. From that time onwards, she had made it clear, orally and in writing, that she did not want to end her life that way. For her, losing her dignity, losing contact with her loved ones, being dependent and being put away would be to suffer unbearably. She wanted to stay in her home as long as possible, where her husband would be her carer. If that were no longer possible, due to deteriorating mental and/or physical circumstances, then for her it would be time for a voluntary, selfdetermined and dignified end to her life.

The patient contacted the SLK in January 2013, after which the physician visited her for the first time. The physician agreed with the patient that her husband would keep an eye on when the moment for euthanasia was approaching and that the physician would maintain email contact with him. Over the course of two and a half years, the physician visited the patient on several occasions and maintained contact with her and her husband via email. Just over seven weeks before her death, the patient’s husband indicated that, given her deteriorating condition, caring for her was becoming too difficult for him.

At that time, the physician began assessing the euthanasia request and the patient’s current decisional competence in relation to her request. She consulted a geriatrician. The geriatrician could not form a judgment on the patient’s decisional competence in relation to her wish for euthanasia, because at that moment the patient did not express a wish for euthanasia.

Three and a half weeks before her death, the patient asked the physician to perform the procedure to terminate her life soon. Her husband could no longer care for her properly and as a result the patient would have to go into a nursing home. She indicated that she did not want this; in such circumstances she wanted to die. The physician found that the patient was decisionally competent and the request was voluntary and well-considered. The physician recorded this conversation on her iPad and made a transcript.

The physician then consulted an independent SCEN physician, who found that the patient’s request for euthanasia in the event that she would have to go into a nursing home was consistent and she was able to substantiate it. However, the patient was equally consistent in her opinion that she did not want to request euthanasia at that point in time.

He advised the physician to consult a physician with more specific expertise. The physician who was subsequently consulted, an elderly-care specialist and SCEN physician, visited the patient 11 days before her death. The patient indicated spontaneously and clearly to the SCEN physician that it had been enough and she wanted to die. The independent physician was satisfied that the request came from the patient herself, also in view of the fact that she expressed her desire to die with conviction and on her own initiative during the interview. The independent physician found the request to be well-considered, given the previously documented interviews and the long-term guidance she had sought and received from the physician.

On the basis of the above, the committee found that the physician could reasonably conclude that the patient’s request was voluntary and well-considered. Although over the course of time there had been moments when the patient did not express a clear desire to die, it emerged that she clearly expressed that desire in the interviews with the physician and the second independent physician – an elderly-care specialist. To them, she indicated unambiguously that she wanted to die now that her husband could not care for her properly anymore and she could no longer live in her own home, in view of her complete dependence on care.

The committee notes the following as regards the patient’s suffering being unbearable.

In her advance directive, the patient indicated clearly under what circumstances she would experience her suffering as unbearable and would want her life to be terminated. In the many interviews she and her husband had with the physician about her wish for euthanasia, the patient also indicated in detail what unbearable suffering meant for her.

When the patient asked for euthanasia to be performed, her suffering was real and current i.e. she was suffering from the loss of control over her thoughts and actions, from fears and uncertainty and complete dependence. At that time the patient was in the situation that she had previously described in her advance directive and in the many interviews with the physician as being one of unbearable suffering.

The committee therefore found that the physician could reasonably conclude that at the time when the euthanasia was performed the patient was suffering unbearably. The committee also considered whether there were any reasonable alternatives. After all, home care would have relieved her husband of some of the burden, thus postponing the need for her to go into a nursing home.

However, in her advance directive, the patient indicated expressly that her husband would be her carer and that if that were no longer possible, the time would have come for a voluntary and self-determined end to her life. Help from other people was not a reasonable alternative, either for the patient or for her husband. They had always refused any help or care that was offered.

Performing euthanasia when her husband could no longer care for her properly was therefore in line with her advance  directive. Together, the physician and the patient could be satisfied that there was no reasonable alternative in the patient’s situation.