Table 1 Summary of cases of EAS for people with ID and/or ASD in the Netherlands (2012–2016)

2013–21

Male

60–70

ASD

Self-diagnosed Asperger’s

“Intelligent”

Neurological and psychiatric conditions since childhood, incl anxiety- and panic disorders, compulsive disorders, depression and excessive worrying

Various psychiatric hospitals throughout life;

received ongoing support from the mental health team

Patient had talked about euthanasia for years.

8 months before: a psychiatrist diagnosed severe and probably chronic depression with a persistent death wish; advised that before euthanasia, a psychiatrist SCEN physician should be consulted.

Physician found “The patient was of clear mind, intelligent and knew what he was talking about.”

1 month before: Psychiatrist SCEN physician examined the patient’s capacity. Found to have full capacity. Did not find any indications of depression or other psychiatric disorder.

“The patient was an utterly lonely man whose life had been a failure. He responded to everything, even the most simple circumstances, with severe panic. He quarrelled with everyone who wasn’t a support professional. The patient had become totally stuck in isolation and found this increasingly painful. He was tired of fighting and could not find rest anywhere. He could not adapt to new situations either. His health was deteriorating and he would have to move into sheltered accommodation. This thought horrified him. It was also very difficult for the patient to have an overview of how to manage his daily life… The suffering was palpably unbearable for the patient.”

No further details given

“Treatment with medication didn’t work because the patient could not tolerate any medicines.”

“The consultant found that the patient’s personality was very poorly emotionally integrated and therapy-resistant.”

SCEN physician (psychiatrist)

1 visit, a month before euthanasia

2013–22

Female

70–80

“Mentally retarded”

Scored low on recent IQ assessment

However, this was put into doubt by her physicians, who argued that the low IQ score was due to a lack of schooling (i.e. she lacked the skills to do the test)

Extensive psychiatric history.

Severe personality disorder.

Impulsive nature.

Somatic conditions in recent years incl:

vertigo, arthrosis, COPD retinitis pigmentosa causing near-blindness.

Patient had asked repeatedly for euthanasia over 2 years.

Disagreement among physicians about capacity: physician thought she had capacity but consulted first a psychiatrist (who disagreed) and a SCEN physician (who agreed).

The RTE asked “Given the fact that the report by psychiatrist T. in 2012 stated that the patient lacked capacity with regards to the euthanasia request, and other reports included various statements that the patient had a psychiatric disorder with roots of intellectual disability, or that she had a medical history as a very unstable, intellectually disabled woman, the committee wondered whether the patient had understood what she was signing when she signed her living will. To what extent was the physician of the opinion that the patient’s possible intellectual disability could possibly affect her decision making capacity?”

The RTE requested further explanations from physician and SCEN consultant (but not from the first psychiatrist who had found that the patient lacked capacity). The physician explained: “The patient’s possible intellectual disability did not hinder her decision making capacity. She could indicate clearly how much she has struggled with her symptoms throughout her life. She had been treated for these for years, with little effect. She could also indicate clearly what the pros and cons of the offered alternatives were for her, thus testing that she not only understood the facts of the information, but she could also weigh them. According to the Appelbaum criteria for capacity, the patient therefore had sufficient capacity… The patient was not an evidently intellectually disabled person: she had good verbal ability and was very well able to express her feelings and opinions.” The independent consultant “felt that the context where the patient later called psychiatrist T. ‘an oaf, who doesn’t understand a thing and held things up’, demonstrates insight… The ability to process information rationally was doubtful, but overall, the patient had capacity.”

The RTE concluded that the physician should have asked yet another psychiatrist to confirm her opinion that the patient had capacity, but in the end accepted that verdict of 2 out of 3 positive capacity assessments.

“The patient’s suffering consisted of an increase in her experiences that people in her immediate environment were influencing her life and making her life impossible. She suffered from her dependence on the care of others and the fact that she could not control her impulses, and that her life was ruled by her emotions. None of the interventions or medication could give her relief.”

“The patient suffered enormously and this was visible… It was understandable to the physician that the patient wanted to die.”

“She indicated that people kept shining lights into her house and that she was disturbed by this. The physician tried to help her understand that the light flashes were related to her eye disease, but the patient could not be convinced.”

Throughout life, many admissions to psychiatric hospitals.

Extensive and varied treatments incl ECT.

“To reduce external stressors, an attempt was made to change the patient’s living situation. She was temporarily admitted to a care centre; in the end, she could not be motivated to move there permanently. Long-term support from a specialist nurse could not reduce the patient’s suffering either.”

Her physician and socio-psychiatric nurse had various conversations and tried to suggest alternative options and treatments. The patient complied and tried the alternatives (further medication treatment and a training programme) before deciding that they did not help and that her situation was hopeless.

Physicians agreed that they had run out of options, and the patient’s symptoms were undiminished.

SCEN physician (GP)

1 visit, 7 weeks before euthanasia

2013–51

Female

60–70

Infantile encephalopathy;

mild ID

Heart attack (18 years ago)

COPD GOLD IV

(5 years ago)

Heart failure

(3 years ago)

Osteoporosis

Vertebral fracture Stroke (6 months ago) Recurring TIAs

Had talked about euthanasia with a range of carers, professionals and priest.

3 months before: requested euthanasia

A psychiatrist assessed capacity; he found “no indications of depression in a narrow sense and that the patient had decision making capacity. There was no written declaration because the patient could not read or write.” (No further details are given)

“Limited mobility, severe fatigue, attacks of breathlessness that were difficult to curtail, realistic fear of suffocating to death, side effects of medication, dysarthria, pain, palpitations, fear for the suffering that awaited her and the hopelessness of her situation. The patient spent a lot of time in bed. She received oxygen. The patient was no longer able to do the activities that she enjoyed. Because of her situation, the patient was increasingly dependent on care.”

No details given

No details given

SCEN physician

1 visit, 3 days before euthanasia

2014–77

Male

30–40

ASD (Aspergers)

Diagnosed 20+ years ago

Mental health problems.

Abuse in early childhood.

Several suicide attempts

3 years before: patient requested euthanasia but psychiatrist refused due to conscientious objections and belief that treatment was still possible. Referred to another psychiatrist 1.5 years later, to deal with the EAS request.

1 year before: Sectioned and forced to comply with treatment as a condition for professional’s cooperation with his euthanasia trajectory.

1 month before: several Drs agreed that sufficient treatments had been tried and failed. Patient was assessed by 2 physicians who found that the due care criteria had been met.

(No mention of capacity assessments)

“The patient’s suffering consisted of always being busy in his head with thoughts, on multiple and different levels, and not being able to exclude himself from stimuli or thought processes. He found that exhausting. He really wanted to turn off his thoughts and find rest. The patient suffered from the fact that he had a great need for closeness with others whilst he couldn’t maintain long-lasting social contacts. This was because he misjudged interactions and was inclined to behaviour that crossed boundaries. He could react to things in a spontaneous and intense, sometimes extreme, manner. This often led to problems. However, the patient could not learn from these experiences. He was frustrated by his ‘forbidden’ feelings, such as longing for sexual intimacy. He suffered from his continuous yearning for meaningful relationships and his repeated frustrations in this area, because of his inability to deal adequately with closeness and social contacts. His damaged development and the subsequent poor frustration-tolerance and lack of basic feelings of safety contributed to his reduced capacity to learn to deal with the limitations of his illness.”

No details given

At initial EAS request (3 years before), psychiatrist refused “because he didn’t think the patient’s situation was without prospect of improvement and there were still treatment alternatives available.”

“Following investigations, [the 2nd] psychiatrist came to the conclusion that sufficient treatment- and support options had been tried in order to conclude that the patient had experienced little or no improvement of his complaints. The psychiatrist was also of the opinion that there was no other condition that warranted treatment. She thought that there was unbearable suffering with no prospect of improvement, caused by an autism spectrum disorder, and concluded that his euthanasia wish should be processed.”

SCEN physician (GP)

1 visit, 1.5 weeks before euthanasia

2014–83

Female

50–60

ID and memory problems; placed under guardian-ship 1.5 year ago; had a mentor

Numerous complaints and conditions, both mental and physical including chronic personality disorder. Past 30 years: anxiety; diabetes mellitus; chronic abdominal problems; pancreatitis; obesity; liver steatosis; gastroenteritis/gastritis.

11 years ago: stroke; hemiparesis; cognitive disorders;

aphasic disorders. Lower leg amputation. Wheelchair dependent.

The patient’s mentor/guardian was present at all meetings described.

Longstanding persistent death wish. Own physician did not want to consider euthanasia request due to complexity of the case. Supported by her mentor, patient registered herself with SLK. Repeated requests for euthanasia to SLK physician and nurse. Physician considered request voluntary and well-considered (no further details given).

Assessed by physician and 3 independent consultants. The 1st consultant “was not sure whether the request was voluntary and well-considered, given the patient’s psychological condition. He could not establish whether the legal due care criteria had been met, due to the complexity of the case and his lack of psychiatric expertise.”

The 2nd consultant (a psychiatrist) “tested the patient’s capacity in accordance with the Appelbaum criteria. The patient had the ability to make and express a choice, the ability to understand information, the ability to appreciate the situation and the ability to handle facts rationally. The consultant considered her to have decision making capacity.”

“Phantom pain, chronic abdominal pain and chronic chest pain. She had decubitus (pressure sores) which she also experienced as painful, and chronic diarrhoea. The patient suffered from her (physical) disability and wheelchair dependence. She could no longer read and couldn’t enjoy anything anymore. Because of her personality, she was in constant conflict with those around her. This drove her family apart.”

“Her personality also meant that she needed constant support, direction and care, which made it necessary for her to live in a geronto-psychiatric unit. The patient had no control over her life and felt socially excluded. She suffered from the lack of prospect of improvement in her situation and the futility of her life. The patient experienced her suffering as unbearable.”

“There was no depression, hallucinations and/or delusions. There was a personality disorder, which coloured the case, but was not an impediment to euthanasia.”

No details given

“Multiple medication therapies were tried, and it turned out her pain could not be relieved with analgesia. A pain team could not see any further treatment options either. Psychiatrically, the patient was also treated, at outpatient clinics and during various admissions to psychiatric institutions. The patient has cooperated with all treatments, and there were no realistic treatment options left.”

SCEN physician (GP)

1 visit, 2.5 months before death

Verdict: not sure due care criteria have been met

SCEN physician (psychiatrist)

1 visit, 1.5 month before euthanasia

SCEN physician (geriatrician)

1 visit, 2 weeks before euthanasia

2015–24

Female

60–70

“Limited coping abilities with possible reduced intelligence and/or cognitive impairments”

10 year history of tinnitus

“Initially, the condition was bearable, but in recent years the severity of her complaints increased.”

Patient’s own GP did not want to meet euthanasia request, so patient registered with SLK (14 months before death)

Patient was admitted to a mental health centre for hearing-impaired, as a condition of physician considering her euthanasia request in future.

Despite progress made at a treatment centre, “the patient remained focused on her euthanasia wish, partly due to her low level of intelligence.”

1st consultant found that patient had capacity, but wanted a 2nd opinion.

2nd consultant found that patient had capacity and was “well able to make decisions.”

The RTE concluded that “a picture has emerged of a patient who had cognitive limitations or reduced intelligence, and who had developed an anxiety disorder with regards to noises. She did not make her request on a whim. She was fully aware of the meaning and consequences of her euthanasia request and she was consistent in her request. She was not pressurised by those around her.”

“Feeling continually plagued by all sorts of different and terrible noises. She was only free of noise when she was asleep in bed. She could not shower, carry out household tasks or tolerate visitors, due to the effect that the noises had on her. She no longer left the house and had become completely isolated from the outside world.”

“With regards to the unbearable suffering of the patient without prospect of improvement, the consultant noted the following. Initially, the consultant couldn’t hear the patient properly. She spoke very quietly because otherwise she was troubled by the sound of her own voice. In order to understand her better, the consultant went to sit next to her. Then, when he spoke, he saw the patient flinch. That reaction was not acted. Partly because of this reaction, the suffering became palpable for the consultant.”

“According to the second consultant, the suffering did not seem to be without prospect of improvement, medically speaking, because for years the patient had rejected every offer of treatment, both psychological and psychiatric, because she deemed these to have no positive effect on her complaints or because she did not feel that she was taken seriously. The patient’s personality traits and her intellectual limitations, however, resulted in an inability to benefit from psychological or psychiatric help.”

“Tinnitus is a physical condition. With her primitive thinking abilities, the patient was focused solely on eliminating the tinnitus completely. Once she realised ‘I will never get rid of it’, her suffering became unbearable and hopeless to her, and she was then only focused on euthanasia.”

“She had been sufficiently informed at her own level”

“When the physician looked at the patient and spoke with her, he saw her suffering… The only alternative for the patient would be to commit suicide. The patient had already made several suicide attempts. The physician was convinced that the patient would try it again... According to the physician, euthanasia was the only way out for the patient.”

“During the follow-up visits, it became clear to the physician that for this patient, there were no possibilities to learn to cope with [tinnitus]. The physician contacted the patient’s GP and various other treating physicians (psychiatrists). Partly based on the information they provided, it had become clear to her that the patient had indeed gone through many treatments in the past, but also, that often the wrong treatments had been instigated. It had also become clear to the physician that the patient often wanted to abandon the treatments, and that the treating practitioners had not encouraged her to try and persevere with these treatment(s) a bit longer.”

“The patient’s personality traits and her intellectual disabilities resulted in an inability to benefit from psychological or psychiatric help.”

SCEN physician

1 visit, > 3 weeks before euthanasia

SCEN physician (psychiatrist)

1 visit, 7 days before euthanasia

2016–03

Male

30–40

ID due to tuberous sclerosis, diagnosed in early childhood

Tuberous sclerosis affecting multiple organs.

Several years ago: progressive tumour growth in abdomen; liver metastases

Repeated euthanasia requests from 2 months before death.

“A skilled doctor and a registered healthcare psychologist assessed the patient’s capacity in relation to his euthanasia request. They concluded that the patient demonstrated insight into his situation and his prognosis, and that he had been able to make an independent decision and understood the consequences of his decision. They decided that the patient had decision making capacity.”

Pain, nausea, difficulty sleeping, fatigue and exhaustion.

“He had become bedbound and dependent on others. He suffered from the prospect of dying of severe nausea and pain due to internal abdominal bleeding or an epileptic fit, without being able to say goodbye to those around him.”

No details given

SCEN physician

1 visit, 2 weeks before euthanasia

2016–48

Female

90–95

A year previously:

diagnosis of long-standing ASD;

diagnosis of mild cognitive disorder (slow thought processes, loss of executive function and mental inflexibility);

language disorder

Combination of age-related conditions (deafness, visual limitations, arthrosis, osteoporosis)

Patient had talked about euthanasia for 5 years, but her GP did not do euthanasia, so she moved to a different GP. Her doctor and an independent geriatrician considered her capable:

“Despite the sometimes challenging nature of the conversations, the doctor thought that the request was voluntary and well-considered.”

However, the independent SCEN consultant “didn’t manage to have a proper conversation with the patient, and therefore he found it difficult to judge whether the criteria had been met… The consultant suggested visiting the patient again in the presence of her immediate family…

In his second report, the consultant concluded… that the criteria had not been met. The consultant was unable to judge whether the patient had decision making capacity and he could not judge whether her suffering had a medical basis, and whether there were reasonable alternatives. He suggested that the patient was seen by a geriatric psychiatrist, in order to judge the presence of possible psychiatric problems.”

Following this, the consultant visited again.

“In his third report the consultant concluded, partly based on the report of the independent geriatric psychiatrist and based on the discussion with the patient, that the due care criteria had been met. He considered the patient to have decision making capacity and the request to be voluntary and well-considered.”

“She repeated her explicit request several times, and on the day of the death she expressed her euthanasia wish once more. From the conversations with the patient the doctor inferred that she was fully aware of the meaning of her request and her situation.”

“Weakness, general decline, physical limitations leading to a loss of mobility and cognitive decline which caused an increase in the communication limitations that were already present due to the autism spectrum disorder. The patient no longer had any interest in the world around her and was no longer able to form social contact. She was avoidant of care and contact. The patient spent her days in isolation in her room and in fact was only occupied by her activities of daily living. She declined any help from others because she wanted to keep doing everything herself – according to rigid rituals – even when that had become almost impossible. She suffered from the increasing loss of control over her life.”

“Because of the lack of reciprosity in communication and the seeming lack of feelings of empathy from the patient, it was difficult to judge whether and why the patient was suffering unbearably… Although to the consultant, the patient’s suffering was understandable only to a limited degree, the clearly substantiated explanations of the independent geriatric psychiatrist convinced him that patients with an autism spectrum disorder suffer in a way that may not be directly understandable to others.”

“She was capable of repeating the information and agreements of previous conversations.”

No details given

SCEN physician

3 visits:

6 months, 4 months and 5 weeks before euthanasia

2016–73

Female

70–80

“She had a mild intellectual disability”

Chronic schizophrenia (30 years)

Difficult life story

Psychosomatic problems

Post-traumatic stress disorder

COPD (Gold 4): 2 years

“The patient had a euthanasia wish which had existed for longer. However, her GP struggled with the way in which the patient behaved and expressed her wish. The psychiatrist who assessed the patient a year before the death, stated in his report that the patient was able to convince him of her death wish, but not of the consistency of that wish.”

Patient self-referred to SLK; physician and consultant found request consistent and well-considered “even though it was at the patient’s limited cognitive level”

Doctors found “patient had decision-making capacity” (no assessment details given).

RTE concluded:

“The patient had a mild intellectual disability but it was evident that she clearly realised what she was asking for. There was a consistent euthanasia request, which was well-considered at her own limited cognitive level.”

Long list of physical and psychiatric problems, including:

“She suffered from chronic pain which was resistant to therapies. She was also limited in her freedom of movement.”

“The patient suffered not only from her physical condition, but also from her psychiatric problems. Because of the increase in her physical problems, she found she had no strength left to bear it. It was more and more difficult to escape her traumatic past. The patient kept thinking about it and found it awful. She suffered from nightmares and medication to improve her sleeping was not effective enough. She didn’t want to increase her medication, as she didn’t want to walk around like a ‘zombie’. And she anticipated that her suffering would only increase if she talked and had long term contact with mental health services.”

“The patient had limited capacity for coping and had firmly declined any psychiatric treatments that were theoretically still possible.”

No details given

“An independent psychiatrist, who assessed the patient a year before the death in relation to her euthanasia wish, was of the opinion that there were still possibilities for treatment, such as sleeping medication or antidepressants. However, these treatment options were declined by the patient…The [2nd independent] psychiatrist, who saw the patient two and a half months before the death, was of the opinion that there were no adequate old or new treatment methods available, due to the substantial, vague and largely unstated psychiatric problems.”

The RTE concluded:

“She had received sufficient and structured support, and in that sense, she had exhausted all avenues of treatment.”

SCEN physician

1 visit, 5 weeks before euthanasia