The Assessment Practice of the ERCs

Since 2013, “multiple geriatric syndromes” (called “multiple geriatric complaints” in 2014 and then changed to “multiple geriatric syndromes” in 2015) have been included as a category in the joint annual reports of the ERCs. Regarding the number of cases of euthanasia in connection with multiple geriatric syndromes that have been reported each year since then, there is no clearly discernible trend. In any case, there has not been a relative increase or an absolute increase in the number of notified cases of euthanasia. See Table 1.

Table 1. Multiple Geriatric Syndromes

From 2013 to 2018 (the year covered by the latest annual report studied for this article), there were 1,433 notifications of euthanasia in connection with multiple geriatric syndromes.Footnote ²⁰ See Table 1. Although an unknown number of cases of euthanasia in connection with multiple geriatric syndromes were also notified before 2013,Footnote ²¹ and the number of notifications in 2019 and 2020 was not yet known at the time of writing, 49 published judgments represent around 3% of the total number of registered notifications in this category. In all these cases except one, the ERCs ruled that the physician had complied with the statutory due care criteria. In the one exception, the physician could not substantiate why she was convinced that there was a well-considered request and unbearable suffering with no prospect of improvement and that no other reasonable solution was available.Footnote ²²

What the published judgments say about the general assessment practice in relation to cases with multiple geriatric syndromes is somewhat unclear. The number of 49 judgments is minimal compared to the total of 1,433, but they were apparently worthy of attention since the ERCs decided to publish them. However, the exact reason for their publication is often not revealed.Footnote ²³ The vast majority of cases in this category apparently do not deserve public attention. Although it is unclear precisely what is being revealed by publishing these judgments, they are all that a researcher has to go on.

A total of 38 patients were female and 11 were male. All the patients were age 80 or over, of which 38 were age 90 or over. Furthermore, it is noticeable that the year 2018, with 13 judgments, makes up a large proportion of the 49 published judgments. The year 2019, in which five judgments had been published up to August 10, 2019, is on course to have a more significant number of published judgments than the years before 2018.

Nonetheless, the figures in Table 1 do not show that a growing number of requests made by elderly people for euthanasia on the basis of “completed life” or “completed life”-type arguments have been carried out since 2013.

Nature of Suffering

Based on the number of notifications, it cannot be argued that the Euthanasia Act currently meets the apparent public demand for termination of life in the case of “completed life.” This does not mean, however, that the Euthanasia Act is unable to accommodate such requests. To determine if, and to what extent, it can accommodate requests for termination of “completed life,” the texts of the judgments need to be reviewed. What conclusions can be drawn from these? Put another way, in cases involving multiple geriatric syndromes, how many syndromes do there have to be?

As pointed out, up to August 10, 2019, judgments had only been published in 48 cases where the due care criteria were deemed to have been complied with. However, it has to be remembered that the researcher can only go on the sparse information about the facts in each case that the authors of the judgments were willing to provide under the heading “Nature of the patient’s suffering,” information that is primarily derived from documents that are not publicly available: the form completed by the coroner, the report of the physician, the report(s) of the consultant(s), last wills and testaments, patient journals, and letters and statements from medical specialists.

However, in all published judgments, the section headed “Nature of the patient’s suffering” is divided into two parts. The first part usually ends with the conclusion “improvement was not possible (any longer). The treatment was exclusive of a palliative nature.” This part relates to the objective component of the criterion (the hopelessness of the suffering) and describes the medical condition. The second part, which relates to the unbearable nature of the suffering, often starts with “The suffering of the patient consisted of (…)” and usually ends with “The patient experienced his suffering as unbearable.”

In the first part, a summary is given of the illnesses and disorders that existed before the patient died: medically classifiable illnesses and disorders such as osteoporosis, rheumatoid arthritis, decompensatio cordis, diabetic retinopathy, decubitus, and glaucoma; illnesses and disorders that are not life-threatening in and of themselves, and which are usually associated with advanced age. In medical terms, the illness or disorder causing the suffering is described.

However, the authors rarely use medical terms exclusively. For in the first part such terms as “pain,” “tightness of the chest,” “tiredness,” and “impaired vision,” or “bedridden,” “dependent on care,” “limited mobility,” “loss of strength,” and “loss of vitality” are almost always included as well. These types of terms are used to describe both the direct and indirect consequences of illnesses and disorders as they are experienced and reported by the patient. After all, impaired vision is a consequence of glaucoma. Poor eyesight is a symptom, and retinopathy is the disease. And being bedridden might be a consequence of severe backache, which in turn might be a consequence of osteoporosis.

It would be logical for the reported symptoms to be mentioned exclusively in the second part of this section, but often both the underlying disorder(s) or illness(es) and the symptoms are described in the first part. And occasionally, only the symptoms are described in the first part, without any mention of underlying disorders or illnesses.Footnote ²⁴ In the first case, this can suggest the presence of many syndromes,Footnote ²⁵ whereas in the second case, it is unclear exactly which illnesses or disorders are involved. In that case, either the causes were simply not identified, or a distinction is not generally made between the illness or disorder and its symptoms, as is the case with incontinence.Footnote ²⁶ Therefore, a certain amount of overlap usually exists between the information provided in the two parts of this section in the published judgments.

“Pain,” “dependent on care,” “tiredness,” and “limited mobility” are also to be found in the second part of this section, in which they are used to describe the unbearable aspects of the suffering in the second part of this section. Virtually always, they are complemented by descriptions of circumstances that contribute to the severity of that suffering.

These “aggravating circumstances” (Table 2) can relate to: (1) the patient’s life history or personality (“the patient had always been extremely active,” “the patient had always been extremely independent,” “the patient (…) had always had control over his own life,” “due to the character of the patient, it was impossible for her to accept the circumstances,” and “the patient had a character that was very centered around her independence”); (2) the patient’s values (“the patient suffered because of his dependence on others,” “the patient felt she was losing control over her life and that she was becoming increasingly dependent on others, something she found unacceptable,” “the patient suffered unbearably because of loss of autonomy,” “the patient experienced help as an infringement of her autonomy,” and “the patient suffered under the loss of dignity”); (3) the patient’s social circumstances (“the patient hardly went outside” and “the patient was becoming increasingly socially isolated”); (4) the patient’s stamina and perspective (“the patient suffered because of fear of further complications,” “the patient did not want to go to a nursing home,” and “the patient did not want to go through any further loss of bodily functions”); and (5) the patient’s sense of purpose (“the patient perceived her life as pointless,” “the patient considered his life to be completed,” and “the patient (…) did not see the point of living any longer”).

Table 2. Reported Factors and Circumstances of Unbearable Suffering

Factors from the first category (pain, limited mobility, etc.) were mentioned in all the 48 cases assessed as complying with the criteria of due care, followed by circumstances that fall under the headings of “stamina and perspective,” “values,” and “life history and personality.” A lack of a sense of purpose was mentioned in 23 judgments.

Only two judgments mentioned factors and circumstances from just one category. These judgments only referred to pain, limited mobility, and so forth. The other 46 judgments mentioned a combination of factors and circumstances from several categories. Only two judgments referred to factors and circumstances of all categories. See Table 3.

Table 3. Number of Reported Factors and Circumstances of Unbearable Suffering

The phrase “multiple geriatric syndromes” can be somewhat misleading. The phrase suggests that if the number of medically classifiable illnesses and disorders is high enough, then the statutory requirement of suffering will have been met. It seems to imply that there is a “tipping point,” where the most recently diagnosed degenerative disorder is, as it were, the proverbial straw that breaks the camel’s back and thus makes the case eligible under the Euthanasia Act.

However, the number of judgments that described the unbearable nature of the suffering exclusively based on the factors in the category of pain, limited mobility, and so on, was limited to just two. Most of the judgments mentioned circumstances of other categories as well, circumstances that contributed to the unbearableness of the suffering experienced by the patient. Analysis of the published judgments reveals that the number of syndromes does not have to be very high at all. Although there are indeed judgments that mention many syndromes in the first part,Footnote ²⁷ there are also judgments that mention just a few.Footnote ²⁸ Therefore, the number of syndromes does not appear decisive: Under the “right” circumstances, only one syndrome will be enough to meet the requirement. Whether or not the suffering is “caused to a significant extent” by one geriatric syndrome will depend on the syndrome and its direct and indirect consequences (factors immediately or indirectly contributing to the severity of suffering, such as pain and limited mobility), but also—and very much so—on the circumstances of the case, more specifically, on circumstances seen as aggravating.

Two Hypothetical Cases

Until now, the figures do not support the conclusion that the Euthanasia Act provides a “way out” for elderly people who want to have their “completed” lives ended. There is no clearly identifiable trend in the number of requests for the euthanasia of patients based on “multiple geriatric syndromes”; moreover, there has not been any increase in the number of notifications in this category, either in absolute terms or in relative terms. This does not mean, however, that the Euthanasia Act does not have the potential to provide a “way out.” For the Act to be applicable, the Supreme Court stated that the suffering must be “caused to a significant extent by a medically classifiable (somatic or psychiatric) illness or disorder.” Considering how the ERCs have applied the criterion, there would seem to be a great deal of room for interpretation.

Let us explore the possibilities by considering two hypothetical cases. For example, a man of advanced age develops a severe hearing disorder because of presbycusis. He will eventually lose most, if not all, of his hearing. Medically, little can be done, and there is no way to slow down the hearing loss. This man, a former professional musician, has always lived for his music. His entire social life revolves around music. He is suffering enormously from the fear of losing his hearing altogether. For this man, a life without music is inconceivable. His life will then be stripped of all meaning. He experiences this suffering as entirely unbearable. This suffering did not exist before the onset of the presbycusis. The musician, who has no other medical complaints, asks his doctor to help him commit suicide.Footnote ²⁹

Does his suffering meet the requirement? Intuitively, many will be inclined to disagree since it is just one disorder; moreover, loss of hearing is commonly associated with the advancement of age. However, the case’s particular circumstances also must be considered. After all, properly functioning hearing is a necessary condition for this specific man’s quality of life. Without adequately functioning hearing, this man’s life is bereft of all quality.

Now take the hypothetical case of an older woman suffering from being alive. This former teacher has never been married and never had children. Furthermore, she no longer has any family, and all her friends have already died. She no longer genuinely desires to see or talk to other people. This woman is independent and healthy, but nonetheless, she is suffering tremendously under the prospect of inevitable physical and mental degeneration. She feels she has lived a good life. She has managed to fulfill all her ambitions in life. But enough is enough, and there is no need to drag it out any longer. One day, she goes to see her doctor because of pain in her joints. The doctor tells her she has arthritis. This woman, who has no other medical complaints, then asks the doctor to assist in her suicide. This case also involves just one of the many frequently occurring geriatric syndromes.

The assessment practice of the ERCs indicates that one illness or disorder may suffice. That practice also indicates that its impact on the patient will depend on the case’s specific circumstances. Although many will object intuitively against the application of the Euthanasia Act in both hypothetical cases, it is, in fact, very likely that an ERC would accept that the elderly musician’s suffering is indeed suffering “caused to a significant extent by a medically classifiable illness or disorder.” In this case, all suffering is, in a way, a consequence of the illness. There would not have been any suffering without the presbycusis.

But the former teacher’s suffering, does that meet the statutory requirement as well? Again, many would intuitively disagree. Not only because of the presence of merely one common geriatric syndrome, arthritis but presumably also because of a perceived difference in cause and consequence, which is considered somehow relevant. For this woman, life itself was already “unbearable” before arthritis occurred. Many would therefore argue that her suffering is not “to a significant extent caused by a medically classifiable illness or disorder.” They would argue that it clearly has other, nonmedical causes. Consequently, arthritis will be seen by many as nothing but an alibi. Surely, the Euthanasia Act is not meant to justify the acts of a physician granting such a request. But would an ERC really have good reasons for disapproving such action?

Of course, the musician’s suffering would completely disappear if his presbycusis could somehow be cured. And, of course, even if her arthritis could be treated successfully, the teacher would continue to suffer severely. But the perceived difference between both hypothetical cases is nonsensical. The fact that, in the musician’s case, all suffering can easily be linked to a medical condition, which cannot be done in the former teacher’s case, makes for a rather presumptuous difference in appreciation. Pain, deafness, and lack of mobility can be seen as consequences of an illness or disorder, but an individual’s personality, life history, or values cannot. Seeing the musician’s all-pervasive passion for music as a cause of his suffering is seriously misreading the facts. It is as much a cause of his suffering as it is the result of his age-related loss of hearing; it is a circumstance. Likewise, the teacher’s personality, her loneliness, and her perception of her life as complete and pointless are circumstances. The fact that her suffering cannot be fully explained by a medical condition, her arthritis, is irrelevant because the musician’s presbycusis cannot fully explain his suffering either. Both cases are similar in that respect. At first sight, many would consider the musician’s case as different in a relevant way, but it does not take much reflection to learn that there is no basis for making such a difference in reality. There is no reason to assume that an ERC would conclude that the statutory requirement was not met in the former teacher’s case. Such a conclusion would be at odds with the logic of the assessment practice.