2016-85, elderly-care specialist, dementia, not acted in accordance with the due care criteria

Publication | 01-01-2016

The patient, a woman in her seventies, began to suffer from forgetfulness nine years before her death. Five years later she was diagnosed with dementia (Alzheimer’s disease). A year before her death, the disease began to progress more quickly. She became very anxious, sad and restless. From the afternoon onwards she was sombre, emotional and tearful, and indicated that she wanted to die. When her husband was no longer able to care for her, she was admitted to a nursing home where she had previously gone five times a week for daytime activities.

Shortly before she received the dementia diagnosis, the patient had set out her wishes concerning euthanasia in an advance directive and discussed them with her general practitioner and her geriatrician. According to the physicians she was still decisionally competent at the time. She renewed this advance directive a year before her death. She also discussed this second directive with her general practitioner, who considered her to still be decisionally competent at that time.

In both advance directives she indicated that she did not want to be placed in an institution for elderly people with dementia (dementia clause). She stated that she wanted to say goodbye to her loved ones at a sufficiently early stage, in a dignified manner, and that she did not want to experience the process that her mother had gone through in an institution. In the first  advance directive she indicated that she wanted euthanasia when she was ‘still to some degree decisionally competent but no longer able to live at home with my husband’. In the second advance directive she wrote that she wanted to make use of the option of euthanasia ‘when I myself think the time is ripe’. The closing sentence read: ‘Trusting that, by the time the quality of my life has become so poor that [...] euthanasia will be performed at my request.’

Towards the end of the year before her death, the patient’s condition deteriorated further and at home she often said she wanted to die. Shortly after, she would often say, ‘But not now.’ In that period the patient and her husband discussed euthanasia with the general practitioner. During that conversation she indicated that she thought euthanasia was going too far. After the general practitioner explained about possible admission to a nursing home if her condition deteriorated she replied, ‘All right, maybe then.’

During the intake interview for the nursing home (seven weeks before her death) the husband asked the physician to perform euthanasia on the basis of the advance directive. The physician subsequently observed the patient frequently and for long periods, and spoke with her. According to the physician, she no longer understood the words ‘euthanasia’ and ‘dementia’. She regularly said to carers in the nursing home that she wanted to die. Reading between the lines, the physician concluded, on the basis of her observations and the conversations, that the patient was expressing a wish to die. But even in this period the patient’s response on several occasions when dying was discussed was, ‘Not now though, it’s not that bad yet.’

The physician who performed euthanasia (an elderly-care physician) twice consulted an independent SCEN physician. The first independent physician, a psychiatrist, established that the patient was decisionally incompetent and that she was suffering unbearably without prospect of improvement. According to the first independent physician the suffering consisted of having completely lost control of her life and being in a situation that she did not understand and did not want. Her life appeared to be a succession of incidents involving aggression, despair, restlessness and exhaustion. As far as this independent physician was concerned, the advance directive took the place of an oral request for euthanasia.
The second independent physician also concluded that the due care criteria had been complied with.

The physician performed euthanasia by first administering 15mg of Dormicum dissolved in coffee (as premedication) and then after 45 minutes another 10mg of Dormicum by subcutaneous injection. Around 40 minutes later the physician administered 2000mg of thiopental intravenously, followed several minutes later by 150mg of rocuronium.
In her report the physician noted that the patient awoke when the thiopental was being injected and put up physical resistance. The committee asked the physician for an oral explanation.

The committee noted that the patient had been admitted to a nursing home even though she had always rejected that notion. It also noted that she was no longer able to request euthanasia herself, whereas she had always assumed – according to the texts of the various advance directives – that she would be able to ask for it herself. The committee also had questions about the actual euthanasia procedure. (Initially there were also questions about her suffering, but the physician plausibly argued before the committee that she was reasonably able to conclude that the patient was suffering unbearably without prospect of improvement.)

As regards the request, the physician stated that she first met the patient when she was admitted to the nursing home. The patient was decisionally incompetent at the time. The physician thought that she was entitled to euthanasia due to her suffering and the fact that it was clear from her advance directive that she had never wanted to end up in a nursing home. The physician checked with the attending geriatrician and the general practitioner as to whether the patient was decisionally competent when she drew up the advance directives. Both said this was the case.

The physician did not take the patient’s response when the thiopental was administered as a sign that she might no longer want euthanasia. As the patient was decisionally incompetent, what she was expressing at that moment was not relevant to the physician. Nor did the physician think it would be appropriate to halt the euthanasia process at that moment.

The committee also put questions to the patient’s former general practitioner. These questions concerned the conversations held about euthanasia and the point at which the patient became decisionally incompetent. The general practitioner had several conversations with the patient when she was still decisionally competent. It was clear that she did not want to go into a nursing home, but also that she felt euthanasia was not yet necessary. Later she became less clear about her wishes concerning euthanasia.

When it became clear, several months before her death, that admission into a nursing home would become necessary, the general practitioner invited her and her husband to the surgery. At that time, euthanasia was not on her mind, nor did she understand what it meant any more. After the general practitioner explained the meaning of euthanasia, she said she did not want that. When reminded of her wish not to go into a nursing home, she said that then she might want euthanasia after all. When the general practitioner explained to her how it worked, she thought that was ‘going too far’. In other words, she was no longer able to indicate what her wishes were concerning euthanasia. The general practitioner was unable say exactly when the patient had become decisionally incompetent in relation to her request for euthanasia. It had happened some time in the year before her death.

In the interview with the committee the elderly-care specialist explained that she had administered the Dormicum dissolved in coffee because the patient was not taking any medication and she would probably have refused had she been asked to take the Dormicum herself. When it became clear that the Dormicum was having insufficient effect, the extra dose was administered. The patient did not like the needle prick. After some time had passed and it was clear the patient was unaware of what was going on around her (moving of furniture etc.) a cannula was inserted. This was difficult and took a long time, but she seemed to be unaware of it. However, when the physician tried to administer the thiopental, the patient sat up. This is what the physician had previously referred to as physical resistance. The family then held her and the physician quickly administered the rest of the euthanatic.

The committee found that the dementia clause written in the year prior to the patient’s death, which accompanied the advance directive, could be read in more than one way. It can be inferred from the wording (‘when I myself think the time is ripe’ and ‘at my request’), viewed in the context of the wording of the first dementia clause (‘when I am still to some degree decisionally competent’), that when the patient drew up these provisions she assumed that she would be able to request euthanasia herself when the time came and that she would indeed do so. It therefore does not follow necessarily from the text of the advance directive in conjunction with the dementia clause, as revised in the year prior to her death, that it was drawn up to take the place of an oral request in the event that she would be unable to determine or express her wishes as a result of dementia.

The committee did realise that a different, wider interpretation was possible which assumed that the directive was indeed drafted to take the place of an oral request. It found, however, that the last dementia clause offered an insufficiently clear basis for such a wider interpretation. Assuming that it did leads to two mutually exclusive interpretations of the clause. In that case, doubt persists as to whether the patient wanted the advance directive to take the place of an oral request. Given this doubt, and taking into account the fact that this was literally a matter of life and death since termination of life is irreversible, in the committee’s opinion those involved should have erred on the side of caution and applied the more restrictive interpretation of the dementia clause. It follows that section 2 (2) did not apply.

In the absence of an oral request from the patient asking the physician to actually perform euthanasia and the absence of a clear advance directive to replace such a request, the committee found that the physician could not have concluded unequivocally that she had made a voluntary and well-considered request for euthanasia.

As regards the actual euthanasia procedure, the committee found that the physician’s actions overstepped a boundary. By – covertly –administering Dormicum, she wanted to deprive the patient of the possibility to resist the insertion of the cannula or the administering of the euthanatics. The committee found that, when the patient did respond negatively, the physician wrongly failed to consider whether this could be interpreted as an important sign that she did not want a cannula and a needle to be inserted. Although the committee acknowledged that it was extremely difficult for the physician to correctly interpret what the patient was expressing at that time, it found that the physician should at least have taken the time to do so.
The committee considered that, although the patient was decisionally incompetent in relation to euthanasia, this did not necessarily rule out that she was able to determine her wishes with regard to actions such as inserting a cannula or a needle, even if she were no longer able to understand the purpose of those actions.

In the committee’s opinion the physician should have halted the euthanasia procedure in order to reconsider the current situation instead of proceeding. The committee also considered that, when performing euthanasia, coercion – and anything that might suggest coercion – must be avoided. It therefore concluded that any claim that euthanasia was performed with due medical care is untenable.