2018-41, due care criteria complied with

Non-straightforward notification, advanced dementia, euthanasia based on an advance directive, premedication.

If euthanasia is based on an advance directive, the committee always invites the physician for an interview.

The patient, a woman in her sixties, was diagnosed with Alzheimer’s disease about six years before her death, on the basis of symptoms she had been experiencing for some time. She received medication to slow down the progress of the disease, but this had little effect. Over the years her condition deteriorated gradually. About four years before her death the patient was admitted to a nursing home.

Her psychological deterioration was such that she eventually no longer recognised anyone and became fully dependent on others for her personal care. She was in a permanent state of unease, was liable to panic and often expressed anxiety.

For instance, she would be startled by her reflection, probably mistaking it for an intruder. At night she was often upset and wandered the corridors of the nursing home, shouting. The patient was no longer able to express what was bothering her. She no longer understood what people were saying to her and could not give them an answer. It was clear that she was suffering from her inability to go to the toilet independently. She regularly soiled herself and it could be deduced from the cries she uttered that she found this terrible.

The patient experienced her suffering as unbearable. The physician noted that there were no longer any moments of reciprocity or joy. According to the physician it was no longer possible to provide the patient with what she considered to be a dignified existence. The physician was satisfied that this suffering was unbearable to her and without prospect of improvement according to prevailing medical opinion. There were no alternative ways to alleviate the patient’s suffering that were acceptable to her.

According to the physician the patient had initially still been decisionally competent. After the diagnosis she had immediately indicated that she would want euthanasia if at a certain point the disease had reached an advanced stage and she was suffering unbearably.

About five years before her death she had drawn up an advance directive to that effect and discussed it at length with the physician. In the years that followed, the patient updated her advance directive several times. In it she emphasised that she attached great value to good quality of life and a dignified end to her life. The circumstances that she would experience as unbearable, and in which she would want euthanasia, were those in which she no longer recognised her close relatives, had become fully dependent on other people for her personal care and had lost her dignity.

At several multidisciplinary consultations the circumstances described by the patient in her advance directive were discussed. At first, her relatives found it difficult to assess her situation. However, about five months before her death, they were all of the opinion that the patient’s circumstances were now as she had described in her advance directive. They asked the physician in writing to assess her situation.

One of the decisions taken at the next multidisciplinary consultation was that the nursing home’s care staff would observe the patient closely and report their findings. These reports showed that at first the patient still appeared to have good moments. However, her situation deteriorated with time. She was no longer able to make any meaningful use of her time and suffered from severe mood-related problems.

About three months before the patient’s death, at the physician’s request, an independent elderly care specialist assessed the patient. Communication was hampered by problems with speech and comprehension. The patient was unable to focus her attention on the conversation and after a while she walked off. The independent elderly care specialist concluded that she was no longer able to explain her request. After all this, the physician was satisfied that she could carry out the patient’s request on the basis of her advance directive.

The physician consulted an independent physician who was also a SCEN physician. About one month before the patient’s death the independent physician spoke with her case manager and five close relatives, after he had been told about her situation by the attending physician and had examined her medical records. After this, he visited the patient together with her case manager.

The case manager informed the independent physician that the patient had expressed her wishes clearly and regularly for as long as she had been able to. In essence, her statements agreed with what she had described in her advance directive. According to the case manager, six months before her death the patient had arrived at the stage which she had never wanted to reach. At that time there were some brief moments in which some contentment was discernible.

In the months that followed her situation deteriorated rapidly and she became increasingly restless. After a while she had reached a state of permanent anxiety and agitation, in which she regularly thumped on the walls. It was unclear what was causing this, so it could not be remedied. According to the independent physician the patient’s relatives gave the impression of being concerned and level-headed and they unequivocally conveyed her wishes.

At the time of the visit, the independent physician did not succeed in communicating with the patient. He observed her and noted that she appeared restless, sad and withdrawn. After a while, the patient walked off and wandered the corridors of the nursing home.

The independent physician established that the patient was no longer able to recognise anyone and had become entirely dependent on others for her personal care. The patient appeared unhappy. According to the independent physician she was receiving the best possible care in the nursing home, but neither that nor her close relatives’ loving attention was sufficient to relieve her suffering.

The independent physician concluded on the basis of his observations that the due care criteria had been complied with. Nevertheless, he thought it would be useful for an independent geriatric psychiatrist to assess whether the patient’s suffering was indeed unbearable.

This was done about two weeks before the patient’s death. The independent geriatric psychiatrist noted that the patient experienced her deterioration as a result of her disorder as catastrophic. She could no longer put her thoughts into words, did not recognise her relatives and seemed agitated, which appeared to stem from helplessness and frustration. He established, partly on the basis of conversation with close relatives, that the patient was not suffering from depression, an anxiety disorder or a psychotic disorder. The independent geriatric psychiatrist concluded that there were no treatable psychiatric problems.

After consulting with the independent physician and an internist specialised in critical care, the physician decided to administer premedication prior to performing euthanasia. She did this because the patient sometimes reacted unpredictably when in contact with other people. The physician could not rule out that the patient might remove the IV cannula from her arm and injure herself.

In the morning the nursing staff gave the patient a tablet containing 7.5mg of Dormicum (which has a calming effect), which she took orally. About 45 minutes later, after administering an analgesic cream and covering it with sticking plaster, the physician administered 10mg of Dormicum subcutaneously and 25mg of Nozinan (used as sleeping medication, enhances the effect of pain relief medication).

After half an hour a nurse from a home care organisation’s specialist team inserted the IV cannula. The physician then performed the termination of life on request using the method, substances and dosage recommended in the KNMG/KNMP’s Guidelines for the Practice of Euthanasia and Physician-Assisted Suicide, published in August 2012.

The committee found that the physician could be satisfied that the patient’s request was voluntary and well considered. It established that in the final period before her death the patient’s ability to communicate was such that she could no longer express her wishes. The committee considered that, when the patient drew up her advance directive and updated it, there was no reason to believe that she was already decisionally incompetent.

Statements from the physician, independent physician, case manager, nursing staff and her close relatives showed that the patient had always been consistent in her wish and repeated that wish on several occasions. The committee was satisfied that when the termination of life on request was carried out, the circumstances described by the patient in her advance directive indeed existed.

The committee also found that the physician had plausibly argued that the patient’s suffering was unbearable and without prospect of improvement. It was clear from the file that the physician had studied the patient’s situation carefully. The physician noted that the patient was suffering severely. At the recommendation of the independent physician, the physician asked an independent geriatric psychiatrist to assess the patient’s suffering as well. This assessment too showed that the patient’s disorder had led to a complete loss of independence and an inability to understand the world around her. This situation resulted in permanent feelings of anxiety and restlessness and made the unbearable nature of the patient’s suffering and the lack of any prospect of improvement palpable to the physician.

The committee found that the physician gave the patient sufficient information about her situation and prognosis while she was still decisionally competent. In addition it was of the opinion that the physician could be satisfied that there was no reasonable alternative in the patient’s situation. The physician’s conclusion was supported by the reports of the care staff and the independent physician. Those reports clearly showed that no positive influence could be exerted on the patient’s situation and that her suffering was unbearable and without prospect of improvement.

The committee also established from the physician’s report and oral explanation that the physician administered premedication prior to performing euthanasia. The reason for this was the fact that in the final period before her death the patient was in a permanent state of restlessness and anxiety, and there was a real chance of a startle response which could cause complications in the euthanasia procedure. The committee found that by administering premedication the physician acted in accordance with good medical practice in these specific circumstances. The physician performed the euthanasia with due medical care.

In this case the physician argued plausibly that she was satisfied that the termination of life on request was in accordance with earlier advance directives and that the other due care criteria had been complied with.

The committee found that the physician had acted in accordance with the due care criteria.