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Physician-Assisted Suicide: Considering the Evidence, Existential Distress, and an Emerging Role for Psychiatry

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Physician-assisted suicide (PAS) is one of the most provocative topics facing society today. Given the great responsibility conferred on physicians by recent laws allowing PAS, a careful examination of this subject is warranted by psychiatrists and other specialists who may be consulted during a patient's request for PAS. In this article, recent evidence regarding the implementation of PAS in the United States and The Netherlands is reviewed. Support is found for some concerns about PAS, such as the possibility that mental illness occurs at higher rates in patients requesting PAS, but not for other concerns, such as the fear that PAS will be practiced more frequently on vulnerable populations (the slippery-slope argument). These data and common arguments for and against PAS are discussed with an emphasis on the tension between values, such as maximizing patient autonomy and adhering to professional obligations, as well as the need for additional research that focuses more directly on the patient-centered perspective. Implications of the available evidence are discussed and lead to a consideration of mental anguish in terminally ill patients including aspects of existential distress and an acknowledgment of the importance of tailoring end-of-life care to the distinct set of values and experiences that shape each patient's perspective. The article concludes with a discussion of an expanding role for psychiatrists in evaluating patients who request PAS.

Religious condemnation and moral disapproval of suicide by society were associated with its criminalization in most societies before modern times. 1 However, views toward suicide changed during the 19th and 20th centuries, coincident with the emergence of psychiatry as an autonomous discipline in which practitioners could diagnose and treat anxiety, depression, and other ailments contributing to suicide. In addition, modern sociological theory describing suicide as a social ill reflecting widespread alienation and anomie facilitated a growing cultural sensitivity to the plight of the mentally ill. Scientific advancements in our understanding of mental illness thus implied that suicide was caused by social or psychological forces often beyond the control of individuals and contributed to the decriminalization of suicide. 1 , 2

Modern laws in the United States allowing physician-assisted suicide (PAS), defined as the practice of a physician providing a competent patient with a prescription for medication for the patient to use with the primary intention of ending his life, are thought to have emerged from a growing dissatisfaction with the medical profession and the development of a national right-to-die movement. 3 The right-to-die sentiment developed in parallel with skepticism of medical authority, beginning in 1967 with the creation of the first living will that allowed patients to make decisions about their end-of-life care years in advance. 4

Currently, assisted suicide is legal in the United States in only four states: Oregon, Washington, Montana, and Vermont. However, it has been a source of controversy in many other states for some time, as voter initiatives for legalizing assisted suicide were introduced and defeated in California, Michigan, and Maine over a period from the early 1990s until 2000. In recent time, legislatures in Connecticut and New Jersey have proposed bills to legalize assisted suicide. These repeated recent efforts in support of assisted suicide and the strident opposition that typically results keep the question in the American public's mind as one of vital importance.

It should be noted that the phrase physician-assisted suicide is itself not without controversy. Proponents of the practice prefer the term aid in dying to describe doctor-provided assistance to patients who want to end their lives. Although I appreciate the sentiment behind such arguments, in this article, I will use PAS to describe the practice, as it is the term predominantly used in the medical context.

As PAS implies, modern attitudes toward death and dying consider the subject of assisted suicide to fall within the purview of medical practice, despite the American Medical Association's opposition to PAS on the grounds that it is antithetical to a doctor's role as healer. 5 U.S. physicians remain sharply divided on assisted suicide, with opposition to the practice associated with increased religiosity and certain moral and ethics-based principles. 6 , – , 8 Oregon's Death With Dignity Act clearly delineates the role of physicians as the primary gatekeepers of assisted suicide in enumerating responsibilities for the attending physician such as ensuring that each patient who requests aid in dying is capable, acts voluntarily, makes an informed decision, and is dying of a terminal disease (defined as an incurable and irreversible disease that will produce death within six months). The grave responsibility conferred by Oregon's Death With Dignity Act suggests that psychiatrists and other physicians who may be consulted to opine on the integrity of a patient's request for aid in dying must think deeply about their views on the subject.

The impassioned debate over PAS spans a wide range of disciplines and reflects the incendiary nature of the question. Arguments for and against PAS touch on many basic moral beliefs and illustrate the tension among values such as autonomy, paternalism, fairness, and the value of human life. Although the controversy can be described in political, social, and medical terms, an individual's feelings on the subject can often be reduced to a simple moral conviction about whether a person can aid another in ending his life. Debates that turn on such basic beliefs tend to divide people deeply, and the resultant conversation is often characterized by rhetoric and ideology. Over time and with the further polarization of views, common ground and compromise often seem unlikely.

However, although it is often overlooked or dismissed in these cases, scientific evidence has the opportunity to inform our thinking on matters that evoke moral and ethics-related questions. While not dispositive, evidence can characterize the conditions and consequences associated with different viewpoints. Some of the most contentious aspects of the debate over assisted suicide include fears or questions that can be illuminated with actual evidence.

In this article, I will review the recent evidence that pertains to the arguments for and against PAS and suggest avenues for future research. I will then discuss implications of the available evidence and consider mental suffering in terminally ill patients as comprising aspects of existential distress (i.e., concerns related to feelings of hopelessness, futility, and meaninglessness; anxiety about death; and disruption of personal identity), as well as acknowledge the importance of tailoring end-of-life care to the distinct set of values and experiences that shape each patient's perspective. Finally, I will explore an emerging role for psychiatrists in evaluating patients who request PAS.

In this section I will review some of the recent data that address some of the open questions and fears regarding PAS. An important caveat is that most of the evidence is taken from studies conducted in Oregon and The Netherlands, and moreover, many of the studies involve the work of Linda Ganzini, a professor of psychiatry and medicine at Oregon Health and Science University. This is not to imply a particular bias on the part of the studies mentioned in this article, but rather to characterize the current state of evidence as limited by region and principal investigator.

Psychiatric Illness in Patients Who Request PAS

One basic question that frames the debate on assisted suicide is the extent to which patients who request PAS have a treatable psychiatric illness. Ganzini et al . 9 interviewed a cross section of patients who requested a physician's aid in dying under Oregon's Death with Dignity Act and found that one in four had clinical depression. In another study, physicians in Oregon who received requests from patients for aid in dying reported that 20 percent of them were depressed. 10 The results of these studies imply that a significant minority of patients who request aid in dying have depression. However, of all patients who received a prescription for a lethal drug in Oregon since 1997, just under 7 percent were referred for a psychiatric evaluation. Ganzini and colleagues also studied health care providers and family members in Oregon and found that these groups thought that depression was rarely a factor influencing requests for PAS. 9 , 11 , 12 Together, these findings raise the concern that clinicians and family members may fail to detect signs and symptoms of depression in these patients.

For purposes of comparison, a recent systematic review found that, in The Netherlands, the rate of depression in patients whose requests for euthanasia were honored was similar to that in the surrounding population of seriously ill patients, but that the presence of depression was a significant factor in refusals of requests for euthanasia, suggesting that the Dutch system may be successful in screening out many requests motivated by depression. 13 Moreover, with regard to the overall prevalence of depressive symptoms in the terminally ill population, one study of terminally ill patients with cancer found that 59 percent of those with a serious and pervasive desire to die had significant symptoms of depression, versus only 8 percent of those without such a desire. 14 This result is consistent with other research that has found an increased association between an expressed desire for a hastened death and symptoms of depression, 15 implying a higher probability that patients who request PAS have depression. These findings suggest the importance of screening such parents carefully for evidence that mental illness may be interfering with their decision-making capacity.

Impact on Vulnerable Patients: the Slippery Slope

Another concern that can be illuminated by evidence is the question of the slippery slope that leads to abuse. Many have expressed apprehension that abusive pressures would disproportionately affect vulnerable patients, such as those whose capacities for decision-making are compromised by cognitive impairment or lack of education, those who are subject to social prejudice, or those who may have been socially conditioned to think of themselves as less deserving of care. 16 Ultimately, there is concern that these pressures would result in an increased risk of death by PAS among vulnerable persons compared with the risk in other populations.

Battin et al. 16 explored this question by examining data collected in jurisdictions where assisted dying is legal, such as Oregon and The Netherlands, and by looking for evidence that the lives of people in groups identified as vulnerable were more frequently ended with assistance from a physician than those of other populations. Their findings were limited by substantial differences in methodologies in source studies and difficulties in determining with certainty the actual incidence of assisted dying in several of the vulnerable groups studied. However, they found no evidence of heightened risk of death by physician assistance in the elderly, women, uninsured people, the poor, racial and ethnic minorities, people with low educational status, minors, patients with psychiatric illness, and patients with chronic nonterminal illness.

Although conclusive proof about the impact of legalized assisted suicide on vulnerable patients would entail studies of higher complexity, duration, and comprehensiveness, Battin et al. certainly provided a first-pass look at the slippery-slope question. At this stage, there appears to be no evidence to support the fear that assisted suicide disproportionately affects vulnerable populations. Instead, the available data indicate that people who die with a physician's assistance are more likely to be members of groups with higher social, economic, educational, and professional status.

Patients' Experience of PAS

Other aspects of the debate on assisted suicide that can be informed by evidence are those related to the tension between autonomy and paternalism. In essence, paternalism presupposes that doctors are better able to act in patients' best interests than the patients are themselves. One way to examine the question of whether patients are indeed capable of making decisions about dying is to compare the quality of death and dying in patients who request PAS with that of those who do not.

Smith et al. 17 sought to determine whether there was a difference in the quality of the dying experience, from the perspective of family members, among patients in Oregon who received lethal prescriptions, those who requested but did not receive lethal prescriptions, and those who did not pursue physician-assisted dying. Altogether, they noted few significant differences between the groups in items that measured domains such as connectedness, transcendence, and overall quality of death. However, they did observe that families reported that patients who received lethal prescriptions had higher quality ratings on items measuring symptom control (e.g., control over surroundings and control of toileting) and higher ratings on items related to preparedness for death (e.g., saying goodbye to loved ones) than those who did not pursue physician-assisted death. Their conclusion was that the quality of death experienced by those who received lethal prescriptions was no worse than that of those who did not pursue PAS, and in some areas, family members rated it as better. In another study, Georges et al. 18 used retrospective interviews with relatives to describe the experiences of patients who died by euthanasia (EAS) or PAS in The Netherlands and found that, according to relatives, EAS had a positive impact on the quality of the end of their loved one's life in 92 percent of cases, primarily by preventing or ending suffering.

One interpretation of the findings of these studies is that in those patients who opt for it, assisted suicide contributes favorably to the experience of their relatives. This inference is supported by evidence from other studies showing no differences in mental health outcomes in family members of patients in Oregon who had requested physician aid in dying compared with family members of patients in Oregon who died of terminal illness. 19 However, although information regarding the experience of family members of patients who opt for PAS may be important in influencing social norms regarding the acceptability of PAS, these data do not speak to the central question of patient autonomy. In fact, it is arguable that the aforementioned studies are irrelevant to the patient-centered perspective, in that they do not directly assess patients' experiences of PAS. In this sense, sufficient research into this and other questions regarding PAS seems to be lacking.

Current State of Research on PAS

As mentioned earlier, most of the clinical studies performed in the United States are associated with the work of one researcher (Ganzini). The relative paucity of research on PAS compared with other areas of medicine implies that there may be a reluctance to study it. Reasons for this reluctance include the taboo associated with PAS, the small number of states that have legalized it, a reliance on using rhetoric or ideology to argue points for or against it rather than actual evidence, and finally, a fear by doctors that research may lead to changes that would restrict, rather than inform, the care that they provide. The identification of the impediments to research in this realm may itself be a consideration for future study, as this may provide a clear path to encouraging more research on PAS.

Another important open question regarding PAS that has not been directly addressed by research to date is the quality of the dying experience of patients who opt to die in this way. Research that directly assessed the patient's experience leading up to death by PAS would clarify questions about the well-being of patients who died by this method and, in doing so, provide evidence potentially in support of PAS as a form of care. Such evidence would be vital for several reasons. For example, it could confirm the sense that physician supporters of PAS have that PAS is a valid form of health care that does indeed improve patients' well-being. Moreover, it would address fears that PAS is inconsistent with the medical dictum to “first, do no harm,” for if it could be shown more clearly that PAS improves the experience of dying for patients, it could be argued that the essence of PAS is to relieve suffering rather than to kill or cause harm. Finally, data taken directly from the patient-centered perspective would address concerns that may be raised about the ability of patients to predict their future mental state accurately, as depressed patients have been shown to have more negatively biased mood predictions, 20 which in turn could adversely affect their ability to make decisions about end-of-life care. 21 Evidence that patients who opt for PAS experience increased well-being up to the time of death would support the belief that, for selected patients, such end-of-life decisions could be consistent and authentic.

The evidence reviewed offers support for some fears with regard to assisted suicide and seems to refute others. One study found no evidence to support the slippery-slope fear that assisted suicide would eventually be used prejudicially on vulnerable populations. 16 Also, researchers found that families of persons who used assisted suicide felt more prepared for and accepting of their loved one's death and in other ways had mental health outcomes that were no worse than those in families of persons who died of other causes. 19

However, data from multiple sources indicate that the concern that depression is often missed or overlooked in patients seeking assisted suicide may be valid. For example, although only a small percentage of patients who request assisted suicide are actually referred to psychiatrists, around 20 percent of those who request assisted suicide have depression. Moreover, health care providers and family members underestimate the extent to which depression is a factor in requests for aid in dying. 9 , – , 12 , 22 From one perspective, this finding implies a need for mandating more frequent referrals to psychiatrists to evaluate patients for evidence that mental illness may have interfered with their decision-making capacity.

On the other hand, psychiatrists and physicians in general may be overly inclined to pathologize suicidal ideation and depression in patients who request aid in dying. Most people with major depression retain competence to make medical decisions, 23 and the legalization of PAS reflects an acceptance that active hastening of death can be a valid choice in terminal illness, implying that PAS can be a valid choice despite the presence of depression. 13 It follows that, although the expression of suicidal ideation may indeed be pathologic in most settings in which it is observed, the conditions that characterize terminal illness may truly be distinct, as patients can reasonably interpret such a diagnosis as a death sentence. One would anticipate that no matter how psychologically healthy a patient might be, it would be understandable for that person to experience feelings of despair, demoralization, and existential distress (i.e., concerns related to feelings of hopelessness, futility, or meaninglessness; anxiety about death; and a disruption of personal identity) in response to receiving a diagnosis of terminal illness.

The Evaluation and Treatment of Existential Distress

Researchers have explored the concept of existential distress in terminally ill patients and have found that their concerns are often related to themes such as loss of control, loss of continuity, and acceptance and preparation. 24 Some have resolved to address the plight expressed by these patients by emphasizing the importance of finding “meaning” at the end of life. Breitbart and colleagues 25 describe psychotherapeutic approaches intended to explore spiritual and existential themes through a meaning-oriented approach that encourages the dying patient to find meaning and purpose in living until death and promotes a patient's personal agency and responsibility.

Chochinov and colleagues 26 have studied the psychological experience of terminally ill patients and have proposed that a fractured sense of dignity can be diagnosed, quantified, associated with a decreased quality of life, and treated with dignity-conserving therapies, such as maintaining autonomy by participating in decisions about care or contributing to something that might serve as a lasting legacy.

Although these researchers have offered therapies that promote continued life, their findings also imply alternative solutions to the existential dilemma facing the terminally ill. For example, important values such as autonomy and dignity would appear to be served with the practice of assisted suicide as well. In fact, assisted suicide might plausibly be a choice that resolves the existential dilemma of terminal illness and its attendant helplessness and hopelessness. Choosing the time and manner of one's death could be a way of symbolically wresting back the reins of the course of one's life. After all, if the healthy among us face up to our finite lives by making choices about how to live, it may also be reasonable for those facing their imminent demise to determine the conditions of their death.

The use of assisted suicide to resolve the existential distress of the terminally ill gains additional support from the work of Chochinov et al. 26 on the concept of dignity in this population. They found that, although there were many common elements shared in different patients' definitions of dignity, there were also important distinctions. For example, some patients valued a “fighting spirit” and “railing against their illness,” whereas others valued acceptance. Some patients spoke of their distress at the thought of having to rely on others for their care, whereas others raised fears related to the anticipation that their death would cause their loved ones pain.

The findings of Chochinov et al . highlight the diverse set of values and manifold experiences within the terminally ill population and imply that treatments aiming to improve these patients' well-being would have to take into account their various desires and perspectives. After deep consideration and reflection on his goals and wishes, as well as careful evaluation to rule out the possibility that pathologic motivations (such as severe mental illness) may be playing a role in his decision, a patient may ultimately decide that assisted suicide is the best way to end his life.

A Role for Psychiatry

These findings imply a potential role for psychiatrists in evaluating patients who request PAS. However, this perspective, too, is not without its complications. Psychiatrists themselves are divided in their support for assisted suicide, with surveys indicating that about two-thirds of U.S. psychiatrists believe that it should be permitted in certain circumstances. 27 , 28 Moreover, most psychiatrists believe that a single independent psychiatric examination would be insufficient to determine a patient's capacity to decide on PAS, 28 especially given previously mentioned concerns about the general difficulty humans have in accurately forecasting their future mental state. 20 , 21

It must be acknowledged that mandated or multiple independent psychiatric examinations would have the effect of increasing the labor and time associated with ensuring the integrity of a patient's request for PAS, which in turn may serve as an impediment to the overall process. Moreover, terminally ill patients may feel stigmatized by being mandated to undergo a psychiatric examination. In Australia, Kissane et al. 29 found that mandated psychiatric assessments for patients requesting euthanasia or PAS sometimes leads them to withhold key information because they see the psychiatric assessment as a legal hurdle to be overcome, suggesting also that mandated psychiatric assessments may compromise the relationship between psychiatrist and patient.

Yet, the push for more extensive evaluations by psychiatrists in this context is understandable. Concerns about a patient's capacity to make reasoned decisions about treatment are likely to be raised in circumstances where a patient expresses a desire for an intervention with unfavorable outcomes and high risk. 30 In addition, some physicians may feel uncomfortable participating in PAS without a more comprehensive evaluation. 28 Thus, in instances where a patient's capacity is in serious question, multiple independent evaluations from consulting psychiatrists over time may be indicated.

For the purpose of guiding a psychiatrist's evaluation of a patient who has requested PAS, Muskin 31 emphasized a psychodynamic approach to exploring the complexity contained in a patient's request to die, which could be interpreted as a communication to the patient's doctor, a method of control over aspects of the patient's life or death, rage or revenge, an expression of hopelessness, or even an expression of guilt, self-punishment, or atonement. A psychiatrist's role as expert in exploration would also include evaluating the effect of psychiatric or medical disease on a patient's decision-making capacity, as well as clarifying communications among treatment team, family, and patient to minimize the possibility of undue influence on a patient's ultimate decision. Finally, a psychiatrist may simply bear witness to and acknowledge the validity of the patient's emotional experience, thereby offering relief by way of empathy. The expertise of psychiatrists in these important areas thus suggests that they would be well suited to provide careful guidance to a patient as he explores his feelings, desires, and values in the service of making authentic decisions about end-of-life care.

In the final analysis, however, a psychiatrist's impressions of the integrity of a patient's request for PAS may turn on the psychiatrist's conception of rational suicide. Thus, it seems critical for psychiatrists to ponder the psychological constituents of rational suicide. Muskin's article 31 is useful in summarizing the questions necessary for a sufficient exploration of a patient's request for PAS, but additional work is warranted to delineate the essential features of rational suicide. The conception set forth by Tomasini 32 of rational suicide as instrumentally rational, autonomous, born of stable goals, and not due to mental illness offers a potential starting point, but in its brevity, it also implies that patients who possess these basic qualities may differ greatly. The challenge will then be for consulting psychiatrists to immerse themselves in a patient's psychological experience with the goal of ensuring that the request is emotionally appropriate, purposive, free of undue influence, and consistent over time with the patient's stated goals, values, and preferences.

Although the arguments and evidence reviewed herein may influence some to change their views on assisted suicide, there are undoubtedly those who will remain steadfast in their beliefs. That strong arguments can be made on both sides of the debate and strident disagreement continues suggests that the question of assisted suicide may touch on something deeper than any single ideology.

In medicine, it may be especially difficult to feel comfortable with helping a patient commit suicide, given that some may equate PAS with killing rather than healing. For this and other reasons, which may be religiously or philosophically derived, certain physicians may feel that it is against their code of ethics to participate in assisted suicide. The question of assisted suicide can also raise feelings of personal failure, as if medicine has nothing left to offer patients, although as implied by the arguments outlined in this article, assisted suicide could instead function as a vital form of care for someone who is suffering.

Indeed, for our purposes in medicine, it is this latter perspective that forms the raison d ' etre of PAS. Rather than merely seeking to maximize patient autonomy in some abstract sense, physicians are experts in the service of patients' health and are therefore obligated to practice PAS only when it is deemed to be in the interest of patients' well-being and not solely in the service of patient autonomy or preference satisfaction. This approach obviates the absurd implication of prioritizing maximization of autonomy over our professional obligations and moreover serves as a useful framework with which to deny the practice of PAS in other conditions, such as chronic, nonterminal illness, in which physicians would feel that PAS would not constitute appropriate care.

In fact, the fear that assisted suicide could eventually be used in such cases is fundamentally unsettling to many. When the philosopher Albert Camus 33 said, “There is but one truly serious philosophical problem and that is suicide,” he was identifying one of the most basic fears that humans can have. Camus' statement highlights the fact that, at one point or another in our lives, we all must confront our mortality and the question of whether life is worth living. As fellow humans and in psychiatry in particular, we hope that each person is able to resolve this dilemma in a way that allows him to live life in a satisfying, meaningful way. Assisted suicide seems to flout that basically pro-life view, but on closer examination, its purpose is instead to relieve suffering in imminently terminal cases where it is thought that no other treatment could reasonably hope to do the same. Our charge as physicians is to encourage an honest, scientific inquiry into the questions raised by PAS that is commensurate with the ideological fervor that surrounds the debate and, as psychiatrists, to ensure that patients struggle valiantly and honestly before making a decision in that direction.

Disclosures of financial or other potential conflicts of interest: None.

• © 2015 American Academy of Psychiatry and the Law
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• Appelbaum PS
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• Justin O'Brien

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• Research article
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• Published: 14 May 2019

A qualitative study on existential suffering and assisted suicide in Switzerland

• Marie-Estelle Gaignard   ORCID: orcid.org/0000-0001-8473-448X 1 , 2 &
• Samia Hurst 1  

BMC Medical Ethics volume  20 , Article number:  34 ( 2019 ) Cite this article

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In Switzerland, people can be granted access to assisted suicide (AS) on condition that the person whose wish is to die performs the fatal act, that he has his decisional capacity and that the assisting person’s conduct is not selfishly motivated. No restrictions relating to the ground of suffering are mentioned in the act. Existential suffering as a reason for wanting to die, however, gives raise to controversial issues. Moreover, existential suffering lacks definition and no consensus exists on how to evaluate and manage it. This study explores the perspectives of care professionals and volunteers from a “right-to-die organization” on existential suffering as a motive for assisted suicide requests.

A qualitative study based on face-to-face interviews was conducted with twenty-six participants: palliative care and primary care providers as well as EXIT right-to-die organization volunteers. Elements from the grounded theory approach were used.

The twenty-six participants described existential suffering in a multiplicity of individual ways. In total, sixty-three stories were recounted. Their representations were grouped into eight categories: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. According to all participants, suffering coming from the loss of self-identity was always linked to physical decline, as if one’s image completely defined someone’s identity. Society’s perception of old people and vulnerable people were also often questioned. Another interesting point was that only four stories referring to a “pure” existential suffering were found. This suffering was related to a feeling that life has come to an end, without identification of any other related restriction or suffering.

Conclusions

Existential suffering is multifaceted. Legislators and right-to-die organisations have to address the question of what make a AS acceptable. The plurality of existential suffering implies the need of a very personalized care. A better understanding of what it is made of could provide a “toolbox” to people concerned by these requests, helping them to explore it in order to offer suffering people a wider range of alternatives.

Peer Review reports

Existential suffering is frequent in seriously ill patients [ 1 ], an important factor affecting quality of life [ 2 ], one of the reasons why some patients request assisted suicide (AS). [ 3 ] The acceptability of requests for AS motivated by existential suffering are, however, controversial. [ 3 , 4 , 5 , 6 ] This controversy is rendered more difficult by vagueness regarding what people understand the definition of existential suffering to be. Indeed, it is often simply described as “being tired of life”, “distress” that arises when the meaning and value of one’s life is unclear » [ 7 ], and despite the increasing focus on existential concerns over the past decade, its definition still lacks consistency and there is no consistency on how to evaluate or treat it. A recent article reviewed the definition of existential suffering and suggested that it could be understood as an incapacitating state of despair resulting from an inner realization that life is futile and without meaning. [ 8 ] In 2011, a review identified 56 definitions of the term “existential suffering”. [ 9 ] The authors emphasized relevant themes such as: the loss of meaning or purpose in life, hopelessness, feeling of loneliness, fear of being a burden, fear of future, loss of social role functioning. They also pointed out the difficulty in distinguishing existential suffering from spiritual concerns or from psychological symptoms such as depression.

Switzerland has what may well be the most liberal legislation on AS in the world, making the question of where to set the limits in practice even more relevant. [ 10 ] Only three conditions are needed in this country to access AS: first, the person whose wish is to die has to perform the fatal act; second, this person has to have her/his decisional capacity; finally, the conduct of the assisting person must have no selfish motive. It should also be noted that the prescription of lethal drugs are subject to the Federal Narcotics Act. [ 11 ] This law leaves an important place to individual freedom and permits the “right-to-die organizations” in Switzerland to define the boundaries of their practice within the legal framework. In 2016, 928 people died from AS in Switzerland and a 2013 study showed that physician-assisted death counted for 1.1% of all death. [ 12 , 13 ] Although the legislation does not examine the reason for requesting AS, the motive “existential suffering” often gives raise to controversial issues. What, then, makes a case of AS morally acceptable? Suffering is surely not limited to disease status. If we consider relief from suffering to be one of the central considerations for AS, it is reasonable to think that the acceptability of a request should not exclusively depend on the diagnosis of an incurable or terminal disease. [ 14 , 15 ]

Professional definitions of existential suffering were examined in 2004 [ 16 ], but to our best knowledge no study has been performed about their perspectives when this existential pain or suffering is part of the request for AS in a country where it is legal. Moreover, no study has been conducted to see how those people confront it, how they actually manage this kind of suffering. This is why, in the context of this particular legislation, we asked care professionals and volunteers from a “right-to-die organization” (EXIT Suisse Romande) who are confronted to assisted suicide to tell us about their experiences regarding existential suffering as being the reason for the request. Asking them first about their representations of existential suffering then enabled us to progressively build the conversation around their attitudes when confronted to it. We hope that their responses can be used to inform the debates in Switzerland and elsewhere about assisted suicide and in particular about the controversy around the acceptability of existential suffering as being the reason for an AS request. In this paper, we present the first part of our study. Before discussing the acceptability of existential suffering as a motive for AS requests, it is essential to clearly understand what this kind of suffering is and who are the people who endure it and request AS. This study could also stimulate thoughts about preferable alternatives that could be offered to these suffering people.

Study design

We chose a qualitative design, face-to-face interviews, for this study because of the lack of insights on how to manage existential suffering when it’s part of the request for assisted suicide. Elements from the grounded theory approach were used to develop a conceptual model derived from the data.

We contacted a full spectrum of persons that we thought to be the most commonly involved in end-of-life care and assisted suicide and we included them into three groups (volunteers from a Swiss “right-to-die organization”, palliative care providers and primary care providers). A snowball sampling was used and each participant was contacted either by email or phone and explanations were provided regarding the goals and the modalities of our study. We also asked them if they felt concerned by this issue and if they consented to participate. No additional selection criteria was taken into account.

Data collection

After this first contact, we collected data through face-to-face interviews done by the main research at a location chosen by the participant (most of the time at their office). Concise information about the study was given before an informed consent was signed (written consent). At the beginning of each interview, the participants were asked their age, gender, job, and how many years of experience they had. We used a semi-structured interview guide (Additional file 1 : Table 1). Interviews ranged from twenty to fifty minutes depending on participants’ experiences with deliberating about assisted suicide and existential suffering. All interviews were tape-recorded and then transcribed verbatim.

Data analysis

We proceeded in three steps: open coding, axial coding and selective coding. As a first step, we used open coding which means breaking down data to examine and conceptualize it into codes. We therefore labelled phrases from the participants. In this example of open coding, a palliative care provider talks about a patient she used to see at home because of chronic pain and who one day shared with her her desire to request AS: “… and who had planned for a long long time to call EXIT with the explanation that she finally had very little company, that her existence didn’t serve anybody anymore and that it finally was her only option.” We labelled this phrase as an example of “loneliness”, “feeling useless” and “loss of hope for a better future”. Three codes were used here.

Axial coding was the second step of our analysis. It consisted of reassembling our codes into broader categories in order to better understand the facets and associations between them. We for example associated the codes “physical decline”, “dependency” and “hurt self” found in different testimonies as being part of the wider category “physical decline and its consequences”. Indeed, according to all participants dependency and hurt self were always a consequence of physical decline.

Selective coding was used only for the code “life is over” because it was found to be a core category and it was important to better clarify its relationship with the other codes.

Two full recordings were double coded and discussed together at different stages during the analysis, to ensure that codes well represented the testimonies of the participants and were suitably associated with others into wider categories. After coding 21 interviews, no newer codes appeared and thus we were satisfied that data saturation had been reached for the main results presented here. [ 17 , 18 ] All quotations were translated from the original French by the authors. People identification is mentioned as follows: Pn (Participant number) / PallCP (Palliative Care Providers) or PrimCP (Primary Care Providers) or EV (EXIT Volunteer).

Protection of human participants

This study was exempted from ethics review by the president of the CCER (Commission Cantonale d’Ethique de la Recherche, Swiss Cantonal Ethics Committee) because the study entailed no more than minimal risks and was outside the scope of the Swiss Federal Act (Human Research Act, HRA) on research with human participants.

The participation was voluntary and did not involve the collection of personally identifiable information.

Participants

Participant characteristics are described in Additional file 1 : Table 2. Between January and April 2016, twenty-seven professionals were contacted to participate in this study. Only one did not answer our request, therefore twenty-six people participated altogether. This included four physicians, one nurse, one physiotherapist, one nurse’s aid, two psychologists, one social worker and two hospital chaplains of a palliative care unit. In addition, we interviewed six volunteers from a Swiss “right-to-die organization” ( EXIT Suisse Romande ), one physician and three nurses from a palliative care mobile team, two general practitioners and a nurse, as well as the person responsible for recreation in a retirement home. The participants varied in gender, age and years of experience.

Professionals’ perspectives on existential suffering as a reason for requesting assisted suicide

Providers from palliative care and primary care, as well as volunteers from EXIT , described existential suffering in a multiplicity of very individual ways. In total, they recounted sixty-three stories. When referring to existential suffering, most of them described a life that wasn’t worth living any longer and/or a life that did not make sense anymore, for many different reasons. The coding of their statements resulted in eight categories that were ranked according to the frequency of their occurrence: physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden, and loss of pleasurable activities (Additional file 1 : Table 3).

Physical decline and its consequences

A vast majority of the participants referred to experiences regarding physical decline and feelings that can result from this decline. The codes grouped in this category are thus: physical decline itself, dependency and hurt self. Each of those includes sub-codes that are listed in Additional file 1 : Table 3.

Physical decline itself and dependency were the two most represented codes in this category. Below is an example of how physical decline can lead to a request for AS:

“( … ) but finally the problem (for her) was the anal incontinence, she didn’t want to continue (living) so she asked us (to assist her) and told us: “Now it’s my limit. I am already blind, deaf, I can’t move anymore and now this (the incontinence). That’s enough!”” (P19/EV).

According to this participant, the reason why this person wanted to die was because of a too damaged physical condition. Actually, most of the participants considered physical decline as being a trigger for existential suffering, in that it induces dependency, pain, loss of pleasurable activities, hurt self or loss of hope. Moreover, we found that the idea of dependency was always linked to physical decline and this is why dependency was included in this category. A palliative care provider illustrates it:

“On the other hand, I had the feeling that for this woman, beyond a certain limit, it was no longer acceptable. She was too damaged, too dependent. You could see it. So, she preferred stepping down before becoming too dependent on nursing.” (P15/PallCP).

This quote shows that dependency was actually considered by this participant as unbearable. It was relevant in many other testimonies.

Participants also pointed out the fact that dependency can induce a diminished perception of someone’s own image and that suffering originates from this feeling. “Hurt self”, one of the codes in this category, is illustrated in the following example:

“The caregivers also play an important role because they frequently are the confidants of patients during the bathing, during their physical activities. It’s often here that patients talk about their suffering regarding their loss of autonomy, their physical decline. It’s often what we hear. One’s self-image also plays an important role in this kind of decision. Patients often tell us: « I don’t recognize myself ».” (P16/PallCP).

“I don’t recognize myself” puts into question the notion of self-identity and it was actually always mentioned this way. This statement signal the role of one’s image or physical appearance defining one’s identity. All participants spoke of deteriorating physical appearance as inducing a loss of one’s self identity. Another participant expresses it differently while talking about an illness that can be the turning point of a change in self-identity:

“There is a relevant element. It’s that often the illness, the severe illness, irrupted into these people’s life and this constituted a threshold . And rightly there often is a fracture between the “before of who I was once” and the “now” where people often take an « ill person » identity. And their identity is now limited to the issue of being ill.” (P8/PallCP).

When participants talked about physical decline, dependency or hurt self, there was another relevant idea to point out. The fact that all the sufferings induced by those conditions can be partly explained by how people perceive them. Here is an illustration by one palliative care provider:

“( … ) I’m convinced that the way society perceives those people who are not productive anymore, ( … ), with cognitive trouble, (those people) becoming a financial burden and the ones becoming diminished or incontinent, is a problem.” (P10/PallCP).

This notion that how people perceive old age or dependency is to some extent responsible for those multiple and different types existential sufferings was recurrent.

Loneliness was the second most mentioned component of existential suffering with nearly two-third of participants who talked about it. According to many participants, loneliness seems to be a significant cause for requesting AS. This is illustrated by a general practitioner talking about one of the last discussions she had with one of her patients:

“( … ) and I told her "I’d just like to know something honestly. If you were with children, grandchildren, would you do that? (request AS). She told me “Surely not”; and I told her “So, it is really (because of) loneliness?” And she told me “Yes”” (P24/PrimCP).

Loneliness was also often described as a loss of human contact. A hospital chaplain talked about solutions that could be proposed to people demanding AS due to existential suffering in these terms:

“So, I think of the possibilities, of activating a greater human proximity, because it’s actually often what is lacking. This lack of connection, this lack of contact. But it is also because this is what people often wanted. Because they arrived to this type of loneliness.” (P5/PallCP).

She actually referred to a kind of “chosen loneliness” contrary to the one induced by the loss of a loved one. Another participant illustrates it:

“She didn’t necessarily have pain, but it’s true that her treatment was quite heavy for her. And in addition, the fact that she was deeply mourning her husband. So, it’s true, I don’t know what exactly motivated her wish to commit suicide”. (P6/PallCP).

This palliative care provider did not exactly understand why his patient requested AS but suggested that loneliness might be partly responsible for it.

Fear of the future

The codes of this category are: fear of a terrible agony, fear of being placed into a retirement home, fear of the unknown, fear of the hospital and anxiety. The fear of an imagined agony was linked most of the times to past experiences, as a nurse put it:

“By digging a bit what was worrying him, it was the memory of his spouse who died from an oncologic illness. She was very young at the time and she was screaming out in pain. And he was leaving the house in order to not hear her screaming out of pain. This had a big impact on him. His fear was really linked to the fact that medicine couldn’t address many of the symptoms, pain in particular.” (P11/PallCP).

The fear of being placed into a retirement home was also expressed a few times and was often linked to the fear of physical decline and dependency as a general practitioner explained:

“( … ) and they had talked about a placement in a retirement home. And I’d say that for many elderly persons this is something, this placement in a retirement home is a “bête noire”. Because it means total decline for them.” (P25/PrimCP).

The other codes within this category were less salient but taken together they pointed to the fact that sufferings were emerging here from a kind of fear of going on living in a state of unbearable decay. Not only was there a fear of potential future suffering but this anticipation itself was a source of current suffering that would lead to a wish to die.

Life is over

This category was mentioned by more than one-third of the participants. It was often described as being tired of life. Although it was often linked to other sufferings, it needed to be differentiated because it really referred to a fully aware reasoning: “My life has come to an end”. Here an example:

“He tells me: “Do you understand? My world shrinks, you can do whatever you want. ( … ) I know that I will be soon coming to an end. I hope everything is going to be alright and that someone will help me if not.” This is an objective observation. He is 91 years old.” (P20/EV).

It is in this category that we found what we can call a kind of “pure” existential suffering. A suffering without identification of any other related ones. Only four of twenty-six participants talked about it and it was described in four out of sixty-three stories. An EXIT volunteer illustrated it:

“But it concerns more the people in the retirement homes. Except this woman who clearly said that she didn’t want to find a spouse again and that her life was finished. That she had a beautiful life, with her husband, that she had raised her children, that she had grandchildren who were going well. So she had done it all and said “so I can leave now””. (P19/EV ).

It sounds like this woman had accomplished what she had to and was ready to die. No physical decline, no dependency. A little bit of loneliness maybe.

Loss of social significance

Loss of social significance was mentioned by eight out of twenty-six participants and was especially described as a feeling of uselessness. Here is an illustration of how this feeling could be experienced as a deep suffering:

“I also think that there is something else we didn’t talk about: this feeling of uselessness. Everything that refers to « me feeling useful », or « me feeling useless », « not serving purpose », is a big suffering.” (P5/PallCP).

The loss of usefulness in family and society was described by participants as linked to the process of aging. And, as mentioned before for the code “Hurt self”, many participants pointed out the fact that society, our culture, might be partly responsible for these feelings such as expressed by a primary care provider:

“( … ) the big existential suffering for many people is this feeling of useless (ness). It doesn’t happen in the cultures where elderly remain integrated in the family, where they can even look after the grandchildren or participate in the activities. Those people (in Switzerland) are lonely.” (P25/PrimCP).

Loss of hope for a better future

Loss of hope for a better future being a cause of a life that is not worth living anymore had the same relevance as the loss of social significance. As one can imagine, the description of what a better future is, is highly personal and plural. This category refers to a feeling that the future will be worse than the present life. Here is an example of a conversation between an EXIT volunteer and someone he helped to die:

“Well, I have to (request AS).” And I told her: “How is that? Why do you have to?” And she told me: “Yes I have to because I don’t have remission anymore.” Yes, it’s true. “Her diagnosis was clear, her remission was finished, her disease reappeared and she did not want to live through that.” (P19/EV).

This woman wanted to requested AS because all she could expect from this point was suffering.

Being a financial burden

The fact that being a financial burden could be a cause of existential suffering and lead to a AS request was stated by six out of twenty-six participants. It was often described as one more form of suffering on top of an already distressful daily life. Like other categories and codes, being a financial burden was described as closely related to the way society perceives old age, dependency or physical decline such as explained by an EXIT volunteer:

“ what those people generally fear is loneliness, and the fact of becoming a burden and being a high cost to society, as we can hear it and read it in newspapers. They also talk about this, and I always tell them “It’s not a reason. You worked; you don’t have to worry because you are expensive. You’re no more expensive than anyone else.”” (P18/EV).

This participant highlights the fact that the concern of becoming a burden might be caused by media’s perception in these people.

Loss of pleasurable activities

The loss of pleasurable activities was the least mentioned category and was often linked to other categories. However, it was important to highlight it because the loss of pleasures and joys of life was directly described as leading to a life that isn’t worth living anymore. Here is an illustration:

“She found that it was not enough to be more or less fit again. And, above all, she gave up visiting Museums in Europe and she loved to do this in the past. So, she came back one day to terminate her life simply because her goals in life couldn’t be achieved any more. Because of physical or psychological problems.” (P12/PallCP) .

In the story of this patient, life wasn’t worth living any longer mainly because her condition prevented her from enjoying museum visits, which used to be the greatest pleasure in her daily life. Hence, life did not make sense anymore for her.

One of the purposes of this study was to deepen the understanding of existential suffering from the perspectives of professionals (palliative and primary care providers) and Right-to-die organization volunteers when it is part of the request for AS, especially in a country like Switzerland, where it is legal. Our study found that existential suffering included physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities, all of which were intertwined with the impression that life had lost its meaning and/or was not worth living anymore.

Suffering coming from a “diminished perception of one’s own image” or from a “loss of self-identity” was always linked to physical decline, which could be a decline in the physical ability to invest life, a profound alteration in physical appearance, or both. In a society that gives great importance to physical appearance, as aging represents a slow loss of a culturally self-identity because one stops to be a productive and contributing member of society, physical decline leads to an even deeper fracture of identity. The loss of vitality separates one from a past life in which one could enjoy the body and depend on it. It also shuts the door on desires and hopes for the future.

According to our participants, society was somehow responsible at least in part for existential suffering. Perceptions of old age or physical decline are influenced by social contexts, they shape the way we see ourselves, and this can lead to deep suffering. A form of internalised ageism could be at work in these situations. [ 19 ] More pragmatically, lack of the sort of social support required to maintain relationships, a sense of self, and well-being may have played a role as well. [ 20 ]

Finally, we found that in most cases existential suffering consisted of different, and sometimes compounded, losses of the dimensions of life. Requests for suicide assistance in such cases were described as emanating from persons who were as if shut out from components of their own existence; a finding similar to the description by Sjöberg and colleagues of older patients’ narratives of being “disconnected from life”. [ 21 ] Despite this, a minority of cases did seem to represent what might be termed “pure” existential suffering, or a feeling that life was meaningless or over, without identification of any specific restrictions in the components of it. This was present in just four of sixty-three stories. These findings are relevant to the status of existential suffering as a possible justification for AS. Cases where life is -sometimes severely- restricted are morally significantly different from those where this is not the case. Existential suffering as a motive for suicide assistance requests often leads to controversial issues. This is partly due to questions regarding whether existential suffering is sufficiently severe, rather than a name given to situations where a decision to ask for death may have been made too lightly. Our findings suggest that most suicide assistance requests for reasons of existential suffering are made by people who are indeed suffering in readily recognizable ways. This is also what the few data from EXIT right-to-die organization on motives for AS requests tend to demonstrate. Even though existential suffering might be present in all requests, and this is something current data does not capture, a serious illness is always present. [ 22 ] Suicide assistance requests motivated by “pure” existential reasons raises different issues. Such cases are of course controversial, and viewed alternately as irrational, as cases where the true causes of suffering remain unrecognized, or as instances of “existential maturity” in facing our own mortality. [ 23 ] Our findings suggest that these situations do exist but only count for a small number of AS requests motivated by existential suffering. In these rare cases, the only justification, recognized by the Swiss law, for offering such assistance is to not have selfish motive and to respect the Federal Narcotics Act. The law actually does not specify requirements in terms of suffering. However, this year, the SAMS (Swiss Academy of Medical Sciences), which provides healthcare professionals with recommendations on ethics issues, published new guidelines on the management of dying and death. They stated that the assisting person has to verify five requirements, including that the “symptoms of disease and/or functional impairments are a source of intolerable suffering” for the patient. [ 24 ] For the first time, the institution provided healthcare professionals with more specific requirements in terms of suffering for requesting AS.

By probably providing the first in-depth published account on this studied group in this particular legal framework, our study contributes to the literature in several ways. It adds content to the definition of existential suffering. Existential suffering is not solely related to being tired of living. It comprises different forms of suffering, and sometimes combines them. As the recent integrated literature review concludes: “Although ambiguity in these definitions may be justifiable given the broad range of similarity in terminology, clinical clarity may be necessary given the current challenges of treating this form of suffering, and a general consensus that it has not been well defined or treated is also required”. [ 9 ] Clinical clarity is essential. It could provide a kind of “toolkit” to people concerned by this question. Based on our findings, we could for example imagine a questionnaire investigating at least these eight categories of existential suffering. This would help care providers and volunteers from “right-to-die organizations” to better understand the suffering experienced by the persons they are taking care of and, in this way, help them to propose more personalized and more appropriate care. Recognizing existential suffering to be plural could help to identify the different actors needed to assist individual patients.

This study has several limitations. First, as in all qualitative research, some intrusion of the researcher’s biases is inevitable. To reduce this effect, some of the interviews were double-coded and all the codes and categories were discussed together. Furthermore, an on-going and reflective research journal recorded the first researcher’s impressions to make sure to stay as close possible to what the participants wanted to share. Our sample size was small, and our participants were recruited exclusively in the French-speaking part of Switzerland. Our results cannot be generalized. However, as our sample of participants is quite representative of the people concerned by the question, it would be interesting to see whether our findings are transferable to other palliative care units, to other primary care providers and to other “right-to-die organizations” in Switzerland. As such, it might help to build a consensus on evaluating and treating existential suffering. Finally, our study focused on the perspectives of care providers and EXIT volunteers, and not on those of people requesting AS. We found, however, that their perspectives were not so distant from the ones of people actually requesting AS, particularly regarding the aspects of loneliness, dependency, hopelessness, loss of life’s meaning and loss of self-identity. [ 5 , 6 , 25 ]

Representations by the palliative care and primary care providers and volunteers from EXIT on existential suffering are multiple. They include the notion of physical decline and its consequences, loneliness, fear of the future, life is over, loss of social significance, loss of hope for a better future, being a financial burden and loss of pleasurable activities. To our knowledge, no study had been conducted yet on the perspectives of these people in a country like Switzerland, where AS is legal and where different groups of people have to confront it and try to respond to it. Our study might be helpful in providing a better understanding of existential suffering to and help identify a wider range of alternatives to offer these suffering people, rather than simply thinking of limiting the conditions for an acceptable AS.

Abbreviations

assisted suicide

Commission Cantonale d’Ethique de la Recherche (Swiss Cantonal Ethics Committee)

EXIT Volunteer

name of a swiss right-to-die organization

Palliative Care Providers

Participant number

Primary Care Providers

Swiss Academy of Medical Sciences

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Acknowledgments

The authors wish to thank the participants in the study for their time and willingness to be interviewed. They would also like to show their gratitude to Paola Ricci for reviewing the initial manuscript and to their colleagues, Dr. Marinette Ummel and Prof. Alex Mauron, who provided insight and expertise that greatly improved the manuscript.

MEG conducted this work without funding as part of her Master Degree in Medicine. The Institute for Ethics, History, and the Humanities at the Geneva University Medical School provided access to library facilities and SH’s salary. The Institute had no role in designing the study, nor in its execution, analyses, interpretation and in writing the manuscript.

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MEG collected, analyzed and interpreted the data and drafted the manuscript. SH contributed to project design, the development of the data collection instrument, and data analysis. Both authors read and approved the final manuscript.

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This study was exempted from ethics review by the president of the CCER (Swiss Cantonal Ethics Committee) because the study entailed no more than minimal risks and was outside the scope of the Swiss Federal Act (Human Research Act, HRA) on research with human participants. The participation was voluntary and did not involve the collection of personally identifiable information. Participants signed a written consent.

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Additional file 1:.

Table 1. Interview guide. The semi-structured interview guide used to collect data. Table 2. Participant characteristics Number of participants and their demographics. Table 3. Results. Representations of existential suffering by the palliative care and primary care providers and volunteers from EXIT right-to-die organization. (DOCX 17 kb)

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Gaignard, ME., Hurst, S. A qualitative study on existential suffering and assisted suicide in Switzerland. BMC Med Ethics 20 , 34 (2019). https://doi.org/10.1186/s12910-019-0367-9

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Euthanasia and assisted suicide: An in-depth review of relevant historical aspects

Affiliations.

• 1 Medical and Surgical Research Center, Future Surgeons Chapter, Colombian Surgery Association, Bogotá, Colombia.
• 2 Grupo Prometheus y Biomedicina Aplicada a las Ciencias Clínicas, School of Medicine, Universidad de Cartagena, Cartagena, Colombia.
• 3 Department of Medicine, RedSalud, Santiago de Chile, Chile.
• 4 Department of Medicine, Keralty Salud, Bogotá, Colombia.
• 5 Colombian Clinical Research Group in Neurocritical Care, Latin American Council of Neurocritical Care, Bogotá, Colombia.
• 6 Department of Intensive Care, Regions Hospital, Minnesota, USA.
• 7 Independent University, Dhaka, Bangladesh.
• PMID: 35242326
• PMCID: PMC8857436
• DOI: 10.1016/j.amsu.2022.103380

End-of-life care is an increasingly relevant topic due to advances in biomedical research and the establishment of new disciplines in evidence-based medicine and bioethics. Euthanasia and assisted suicide are two terms widely discussed in medicine, which cause displeasure on many occasions and cause relief on others. The evolution of these terms and the events associated with their study have allowed the evaluation of cases that have established useful definitions for the legal regulation of palliative care and public policies in the different health systems. However, there are still many aspects to be elucidated and defined. Based on the above, this review aimed to compile relevant historical aspects on the evolution of euthanasia and assisted suicide, which will allow understanding the use and research of these terms.

Keywords: Assisted suicide; Bioethical issues; Euthanasia; History of medicine; Terminal care.

© 2022 The Authors.

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Conflict of interest statement

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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Euthanasia and assisted suicide in patients with personality disorders: a review of current practice and challenges

• Lars Mehlum   ORCID: orcid.org/0000-0003-2813-0045 1 ,
• Christian Schmahl 2 ,
• Ann Berens 3 ,
• Stephan Doering 4 ,
• Joost Hutsebaut 5 ,
• Andres Kaera 6 ,
• Ueli Kramer 7 ,
• Paul Anthony Moran 8 ,
• Babette Renneberg 9 ,
• Joaquim Soler Ribaudi 10 , 11 ,
• Sebastian Simonsen 12 ,
• Michaela Swales 13 ,
• Svenja Taubner 14 &
• Ester di Giacomo 15 , 16  

Borderline Personality Disorder and Emotion Dysregulation volume  7 , Article number:  15 ( 2020 ) Cite this article

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Over the last two decades an increasing number of countries have legalized euthanasia and physician-assisted suicide (EAS) leading to considerable debate over the inherent ethical dilemmas. Increasing numbers of people with personality disorders, faced with unbearable suffering, have requested and received assistance in terminating their lives. EAS in people with personality disorders has, however, received very sparse attention from clinicians and researchers. In this paper, we examine the literature on the practice and prevalence of EAS in people with personality disorders to date and discuss the associated challenges for research and practice.

Narrative review of the literature combined with the authors’ collective experience and knowledge of personality disorders.

In six of the eight countries where EAS is currently legal, mental disorders are accepted as disorders for which EAS may be granted. In four of these countries, EAS in minors with mental disorders is also accepted. Our literature search resulted in 9 papers on the subject of EAS in people with personality disorders. These studies suggest that most clinicians who grant EAS have indeed perceived their patients’ suffering as chronic, unbearable and untreatable without prospect of improvement. The majority of patients with personality disorders had tried some form of psychotherapy, but very few had received any of the relevant evidence-based treatments. The decision to grant EAS based on a perception of the patient’s illness as being untreatable with no prospect of improvement, could, thus, in many cases fail to meet the due care criteria listed in EAS laws. People with personality disorders more often wish for death for extended periods of time than people without these disorders. However, there is ample empirical data to show that suicidal tendencies and behaviour can be treated and that they fluctuate rapidly over time.

Conclusions

In light of our findings, we believe that the current legislation and practice of EAS for people with personality disorders is based on an inadequate understanding of underlying psychopathology and a lack of awareness about the contemporary treatment literature. Moreover, we assert that this practice neglects the individual’s potential for having a life worth living.

On February 20th 2020 Portugal’s parliament provisionally approved a bill to legalize euthanasia and physician-assisted suicide (in the following collectively labelled EAS), thus joining a burgeoning group of nations who have chosen to permit what has for many centuries, remained a prohibited and morally condemned practice. Similar legislative changes are currently taking place in other countries. Invariably, what motivates legislators to decriminalize EAS, is to end what is considered as unbearable, untreatable and unnecessary suffering in people with incurable illness and, thus, assisting a peaceful death. Although somatic suffering is almost always the main focus of law-makers attention, life-ending assistance for people with mental illness has become more common in recent years. Over the past decade, we have identified the fact that an increasing number of people with personality disorders (PD) have requested and received EAS. Nevertheless, EAS in this group has received very sparse attention. In this paper, we examine the literature on the practice and prevalence of EAS in people with PD to date, discuss associated challenges and provide recommendations for policy makers, clinicians and researchers.

A brief history of euthanasia

The Greek term euthanasia (εὐθανασία) denotes a good ( eu ) death ( thanatos ) and was from antiquity originally not associated with physician-assisted dying, but regarded as a natural and highly desirable course at the end of one’s life [ 1 ]. Indeed, under the Hippocratic oath, any kind of assisted dying is explicitly forbidden [ 2 ]. In the medieval period and early modern age, euthanasia was generally prohibited and it was only at the beginning of the sixteenth century that so-called “mercy killing” was openly discussed and supported by some philosophers and ethicists. Euthanasia was regarded as a facilitation of dying, assisted by physicians and potentially, but not necessarily, shortening life [ 1 ]. In the late 19th and early 20th centuries, on the background of Darwinism and the Eugenics Movement, euthanasia became more frequently discussed and practiced, culminating in the ideology and practices embraced by the Nazi regime in Germany, where so-called “Gnadentod” (German for “mercy death”) became a euphemistic term for the coordinated killing of mentally ill and physically or mentally disabled people who did not fit into the prevailing ideal of human beings. As a consequence, in German-speaking countries the term “euthanasia” is still negatively charged and has, thus, been banned from the societal discourse and replaced by the term “aktive Sterbehilfe”, which is close to the English term “assisted dying”. This linguistic situation is different in many other countries in the world, where euthanasia in the public eye seems to represent a more or less desirable facilitation of death without pain or other suffering.

A contemporary definition of euthanasia is proposed by Denys [ 3 ]: “Euthanasia means that the physician acts directly to end the patient’s life, e.g., by giving a lethal injection”. In contrast “Physician-assisted Suicide” (PAS) is the situation in which a physician provides the specific means and instructions to a patient with the intention of ending the patient’s life, but where the patient him/herself performs the act of ending his or her life [ 4 ]. In 1942, Switzerland was the first country to legalize PAS but not euthanasia. However, according to Swiss legal practice, the latter will not be punished, if it is delivered free of selfish motives [ 5 ]. After 2001, seven more countries have legalized PAS and/or euthanasia (for an overview see Table  1 ). The Netherlands, Belgium, Luxembourg as well as Colombia and Canada now all permit euthanasia, whereas Switzerland, parts of Australia (the state of Victoria), and ten states of the USA only legalized PAS. In addition, the legislature of New Zealand has just recently allowed euthanasia, but the final decision will be made in a referendum in 2020. In Germany the Federal Constitutional Court (Germany’s highest court) in February 2020 overturned a ban on organized assisted suicide, thus declaring that the right to die includes the freedom to rely on the voluntary help of another person. In all of the countries having legalized PAS and/or euthanasia, so far, more or less detailed procedures have been described as requirements for directly or indirectly helping people to die. Usually, an examination by a medical doctor has to take place, and the person has to be able to decide freely without being influenced by any relevant cognitive impairment or external pressure.

Although PAS or euthanasia were originally intended to facilitate death without pain or other suffering from physical illness, people with mental illness have gradually also been considered eligible.

This paper is based on a narrative review of the literature combined with the authors’ collective experience and knowledge of personality disorders from extensive clinical practice, clinical research and treatment development, and involvement in the formulation of national policy in relation to the management of personality disorder.

Literature search

We searched the Medline database (OVID) for peer reviewed articles and letters to the Editor published in English through October, 2019 with the following MeSH-terms: “Euthanasia”, “Euthanasia, Active”, “Euthanasia, Active, Voluntary”, “Suicide, Assisted”, “Personality Disorders” and “Borderline Personality Disorder”. No language or time filters were applied. The literature search resulted in 9 papers; 2 regular articles based on empirical studies, 4 literature reviews and 3 comments/letters to the editor. In the following, we summarise the main findings and conclusions from these publications.

Table 1 provides an overview of the legislation on euthanasia and physician-assisted suicide in the different countries where it is established. The majority of the countries allowing EAS restrict it to people above the age of 18 years, whereas the Netherlands offer both PAS and euthanasia from the age of 12 years, Colombia permits PAS in children after the age of 5 years, and Belgium has abolished any age limit (Table 1 ).

In the case of Belgium, the law requires a repeated wish from the child himself and permission from parents (except in the case of so-called ‘emancipated minors’ where a minor, through court order or other means, legally becomes an adult). Few cases of EAS in minors have so far been reported; all in cases of physical illness. Some countries allow EAS in mentally ill people, provided they are considered able to express their free will (this is not required by Colombia and Australia, but here EAS is not permitted for psychiatric reasons). To be granted euthanasia in Belgium, to date the country with the most liberal EAS legislation, a person must be “in a medically futile condition of unbearable and untreatable physical or psychological suffering, resulting from a serious and incurable disorder caused by accident or illness” [ 6 ]. The Federal Control and Evaluation Committee on Euthanasia in Belgium reports [ 7 ] that about of 3% of EAS-cases are mainly linked to mental disorders. Thienpont and colleagues [ 8 ] conducted a retrospective analysis of medical records of the first 100 consecutive patients (23 men and 77 women) who requested euthanasia for psychological suffering associated with mental disorders in the years between 2007 and 2011. The most common of these disorders were treatment resistant mood disorders ( n  = 58) and personality disorders ( n  = 50), whereas 29 patients had both types of disorder. Among the 50 patients with a PD, 27 had borderline PD (BPD), 3 had dependent PD, 2 had histrionic PD and 18 had some other PD or PD not otherwise specified. In all patients with PD suffering was reported to be chronic, constant and unbearable, “without prospects of improvement, due to treatment resistance” [ 8 ]. The study does not specify or operationalize the concept of “treatment resistance” or how it was measured. In total, 48 of all of the 100 euthanasia requests were accepted, of which 35 were carried out, but the authors do not specify how many of these had a PD diagnosis.

In 2018, 4% of all deaths in the Netherlands were due to EAS, and among all cases of EAS ( N  = 6126) around 1% involved patients with a mental disorder according to the Dutch regional euthanasia review committees (RTE) [ 9 ]. Since 2013 the RTE has published all psychiatric cases of EAS on their website. Kim and co-workers reviewed the first 66 psychiatric cases of EAS published and found that 52% of these were patients with personality disorders or difficulties [ 10 ]. The prevalence of PD was higher in patients who were younger. Recently, a larger Dutch study based on content analysis was published by Nicolini et al. [ 11 ]. Among the 116 cases published by the RTE, a diagnosis of PD was likely, according to the authors’ clinical judgement, in just under two-thirds of cases ( n  = 74), although a PD diagnosis had been explicitly made by the patients’ doctors in only 48 (41%) cases. The majority (72%) of patients with PD had received some form of psychotherapy, but mostly of unspecific nature, and only one patient (1%) had received any of the standard PD-specific evidence-based treatments currently in existence.

Most of the people who request EAS for mental illness appear to be experiencing multiple mental health problems. In the study by Kim et al. [ 10 ] depressive disorders (55%), posttraumatic stress disorder and other anxiety disorders (42%) were prominent whereas 52% of the patients had personality-related problems, sometimes without a formal PD diagnosis, more so in younger patients. Social isolation or loneliness were mentioned in 56% of the cases.

Our review of the literature suggests that a large proportion of people with mental disorders who request and receive EAS are people with personality disorders. It is difficult to reach firm conclusions about prevalence figures and proportions based on the limited number of studies and cases reported in each study. Yet, we think these findings make for disturbing reading, particularly in light of the time-sensitive changes that can occur in the psychopathology of personality disorder. We consider this issue further below.

Personality disorders and the wish for death

Suicidal and self-harming behaviours are frequently seen in people with personality disorders, in particular borderline personality disorder (BPD), where this is one of the diagnostic criteria [ 12 ]. Emotional and behavioural dysregulation is characteristic of BPD and is closely linked to suicidal behaviour [ 13 ]. In addition, suicidal behaviour in people with BPD is often linked to the wish to seek help, to communicate or to solve interpersonal problems. An important aspect of BPD individuals’ problems is their difficulty with regulating their relationships with other people maintaining nurturing close interpersonal relationships over time [ 14 ]. This extends to the clinical setting where patients with BPD all too often feel disappointed, rejected or invalidated by their therapists and thus terminate treatment at an early stage [ 15 ].

A wish for death and an increased risk of suicide may be prominent, although less well documented, among people with other personality disorders. In narcissistic personality disorder, there is frequently a hypersensitivity to the evaluations of others and a fluctuation in the self-esteem between grandiose and depleted states, depending on life circumstances [ 16 , 17 ]; these are personality features associated with an increased risk of both suicidal and non-suicidal self-injury [ 18 , 19 ]. Suicidal behaviour is frequently seen in people with antisocial personality disorder, where it is often associated with severe problems in interpersonal relations and with the justice system.

It follows from the above that people with personality disorders on average more often contemplate death and may have a stronger wish for death for more extended periods of time than is the case for people without these disorders. We have, however, no data to suggest that these tendencies of thinking about suicide or wishing for suicide are completely immutable to change. Rather they are very likely learnt dysfunctional behaviours, and they fluctuate rapidly. An individual who frequently experiences strong and painful feelings of helplessness, sadness and entrapment may find that thinking of death and suicide will offer some sense of control (“I can stop the pain”) and relief. Thus, it will be likely that this person will be more inclined to think about suicide next time the painful feelings become overwhelming. This reinforced pattern of frequently thinking of and/or wishing for death and suicide is very familiar to many people with BPD and other personality disorders [ 20 ], but it may seem difficult to accept or to understand for other people, including health-care personnel. In turn, this frequently leads to a host of dysfunctional transactions between people with severe PDs and their families and carers.

Under the principle of self-determination, it can be argued that only patients themselves can be the judge of what is best for them and that it should not be up to doctors to make interpretations of a patient’s wish for death. Whereas we respect this principle, it is still the duty of clinicians to provide due care and use their knowledge to act in accordance with what they believe is in the best interest of their patient. This is also emphasized in the due care criteria in several of the current laws and guidelines for EAS, for example in the Dutch guideline where it mentions explicitly that if the wish for death is a symptom of a mental disorder, it should be treated and not lead to EAS.

We believe that in contexts where EAS for people with PDs is available, particularly precarious circumstances are present, with the potential for adverse consequences. Frequent suicidal communications and requests for EAS may lead carers to underestimate the basic criterion for granting such requests; that the patient’s situation must entail unbearable suffering with no prospect of improvement and no alternative to end the suffering. However, in most cases even severe suicidal tendencies and self-harming behaviour can be treated and individuals can be helped to recover. We must emphasize that a range of psychosocial interventions, including cognitive-behavioural therapy, dialectical behaviour therapy and mentalization based therapy have all been shown to reduce suicidal and self-harming behaviour in randomized trials with both adolescents [ 21 ] and adults [ 22 ]. Admittedly, even though effects of specialized treatments are good for the average patient, some patients are non-responders or even deteriorate or drop out early. We would argue that, in cases of non-response, patients with PD should be offered an alternative evidence-based treatment before EAS is considered. Currently, we don’t know how large proportion of patients with PD requesting euthanasia could have been treated effectively, and how big the group is who would not respond to even the best of treatments. There is a great need for more studies to shed light over these important questions.

The transactional aspects of asking for and granting of EAS in patients with PD

A request for EAS from a severely ill patient, in reality, may be a request for communication about loneliness or mental suffering, or an attempt by the patient to find a reason to continue living through eliciting a dialogue with his/her doctor or mental health worker [ 23 ]. Studies have shown, however, that people with BPD have significant difficulties with correctly appraising other people’s emotions and intentions through observing their facial expressions [ 24 ]. They frequently associate neutral faces as expressions of sadness, aggression or disgust. Such difficulties could result in patients believing that their physicians agree with them that they would be better off dead. To our knowledge, there are no empirical studies of whether, and how frequently, such misperceptions occur in the context of requests for EAS and whether they have a significant influence on the outcome of these requests. In our experience, this is just one of several possible mechanisms through which patients and their carers might severely miscommunicate with respect to requests for and granting of EAS.

Authors writing about EAS from a psychodynamic perspective have highlighted that a request for EAS may be viewed as an expression of rage at the physician for a variety of reasons – for example, appearing to give up (or indeed giving up) on the patient, or not provide a cure [ 25 ]. Clinicians often find it hard to work with these clients because being close to someone who is in unbearable emotional pain is difficult. Furthermore, clinicians frequently experience their transaction with patients with BPD as more difficult and demanding than with other patients. This is very accurately described by the well-known American psychiatrist Allen Frances as follows: “Most of us have a much greater immediate empathy for a patient’s depression or anxiety, and even for violent impulses and psychotic thinking, than we do for the relief some patients feel when they hurt and scar themselves. The typical clinician (myself included) treating a patient who self-mutilates is often left feeling some combination of helpless, horrified, guilty, furious, betrayed, disgusted and sad” [ 26 ].

Again, it is important to remember that our knowledge on what influences physicians’ decisions when dealing with requests for EAS is very limited due to a severe lack of research in this field. However, in a Dutch study, a lower proportion of physicians found it conceivable that they would grant EAS in patients with mental illnesses (34%) than the proportion who found it conceivable that they would grant EAS in patients with physical illnesses, such as cancer (85%) [ 27 ]. Interestingly, general practitioners were 2.6 times more likely than clinical specialists to find it conceivable that they would grant EAS in patients with mental illnesses. This could mean that with higher level of clinical expertise may follow a reduced willingness to grant EAS for mental illnesses.

Patients with BPD and suicidal and self-harming behaviours are typically regarded as being hard to treat. This seems to have been the case with patients with PD in the study of Thienpont et al. [ 8 ] who were perceived as being “untreatable”. However, the question whether patients with PD are untreatable or “uncurable”, as demanded by Belgian law, is debatable. The most prevalent PD diagnosis in this particular study was Borderline PD, which although often a long-term condition, is not, contrary to popular belief, an incurable disorder. Over the past twenty years, treatment studies have flourished showing that a diverse range of manualized treatments for BPD such as dialectical behaviour therapy (DBT), transference-focused psychotherapy (TFP), mentalization based therapy (MBT), or schema therapy are effective with medium to large effect sizes and remission achievable in a high percentage of cases [ 28 , 29 ]. National guidelines (e.g. in Germany or the UK) recommend one of the evidence-based psychotherapies mentioned above as first-line treatment [ 30 ]. They also stress the importance of careful delivery and supervision of these treatments by trained therapists, and the potential benefit of adjunctive psychotropic medication for symptom relief. Currently, there is a scarcity of research into the question of whether patients with PD who requested EAS were offered evidence-based PD-specific treatment. We think, however, that it is doubtful whether these guidelines have been followed in the majority of individuals with BPD who have requested EAS. We strongly recommend that adherence to guidelines for state-of-the art treatment for PDs, and BPD in particular, are included in the decision-making process underpinning EAS applications.

Conclusions and recommendations

Based on the scant published literature, we have serious concerns about the practice emerging in an increasing number of countries of facilitating EAS for people with personality disorders. This appears to be based on faulty assumptions about the underlying psychopathology and a lack of awareness about the contemporary treatment literature, particularly on borderline personality disorder. First, we would argue that wishes for death or suicide, even when clearly articulated by the patient to doctors or next-of-kin, and even if it represents the true will at that very moment, this desire or wish for death will likely change in many of these cases. As we have pointed out above, such an articulated death wish, can be a symptom of the disorder and may in reality convey several other possible messages, that have more to do with the patient feeling abandoned, disappointed or angry. It may also convey a wish for help to live rather than a wish for help to die. Second, we would claim that the notion of personality disorders as “untreatable” conditions and “without prospects of improvement” are based on outdated knowledge about the state of PD treatment. Today, a range of effective psychotherapeutic interventions are available for people with personality disorders in most of the countries that have so far legalized EAS. That this has seemingly escaped the attention of both legislators and expert medical communities is deeply disturbing. It may be that the current lack of effective psychotropic medication to treat personality disorders could have made many physicians and psychiatrists not specializing in PD treatment less optimistic about the prognosis in people with PDs and the prospects of receiving effective treatment in general. We urgently call for a revision of the current legislation and practice of EAS for people with personality disorders which we believe, is currently based on an inadequate understanding of these peoples’ needs and their potentials for having a life worth living.

We recommend that professionals involved in making decisions regarding granting of EAS as a minimum should receive training covering a) insight in the fluctuating nature of suicidal thinking and its emotion regulation function, b) the evidence that PD – but especially BPD – is treatable, c) the risk of miscommunication around this issue given the impairments in identifying / reading emotions in others combined with a sense of being a burden to others and d) an examination of their own attitudes and beliefs towards suicidal and self-harm behaviour with particular attention to their own emotional responses. We further recommend that EAS Guidance should require that clients with BPD should have had a substantial period of treatment in at least two of the evidence-based approaches from an appropriately trained and supervised clinical team which has led to no noticeable improvement before EAS can be considered. Given the high likelihood of change in presentation of any mental disorder in minors, EAS should not be considered on the grounds of any established or emerging mental disorder for those under 18 years. Finally, we recommend legislators involved in EAS legislation and policy making should make provisions for funding of research into the current practice of EAS in people with mental disorders.

Availability of data and materials

Not applicable.

Abbreviations

Euthanasia and physician-assisted suicide

Physician assisted suicide

• Personality disorder

Borderline personality disorder

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Acknowledgements

Author information, authors and affiliations.

National Centre for Suicide Research and Prevention, Institute of Clinical Medicine, University of Oslo, Oslo, Norway

Lars Mehlum

Department of Psychosomatic Medicine and Psychotherapy, Central Institute of Mental Health, Heidelberg University, Mannheim, Germany

Christian Schmahl

University Psychiatric Centre Duffel, CAPRI, faculty Medicine and Health Sciences, University Antwerp, Antwerp, Belgium

Department of Psychoanalysis and Psychotherapy, Medical University of Vienna, Vienna, Austria

Stephan Doering

De Viersprong Institute for Studies on Personality Disorders, Bergen op Zoom, The Netherlands

Joost Hutsebaut

Kanta-Häme Central Hospital, Hämeenlinna, Finland

Andres Kaera

Department of Psychiatry, University of Lausanne, Lausanne, Switzerland

Ueli Kramer

Centre for Academic Mental Health, Department of Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK

Paul Anthony Moran

Freie Universität, Berlin, Germany

Babette Renneberg

Department of Psychiatry and Legal Medicine, Hospital de la Santa Creu i Sant Pau, Autonomous University of Barcelona, UAB, Barcelona, Spain

Joaquim Soler Ribaudi

Centro de Investigación Biomédica en Red de Salud Mental, CIBERSAM, Madrid, Spain

Stolpegaard Psychotherapy Centre, Copenhagen, Denmark

Sebastian Simonsen

NWCPP, School of Psychology, Bangor University, Bangor, UK

Michaela Swales

Institute for Psychosocial Prevention, University-Hospital Heidelberg, Heidelberg, Germany

Svenja Taubner

School of Medicine and Surgery, University of Milan-Bicocca, Milan, Italy

Ester di Giacomo

Psychiatric Department-ASST Monza, Monza, Italy

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All authors have contributed substantially to the manuscript. LM designed the study and performed the literature search, LM, EdG, CS and SD drafted the manuscript and LM, CS, AB, SD, JH, AK, UK, PAM, BR, JSR, SS, MS, ST and EdG commented upon drafts and approved the final manuscript.

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Mehlum, L., Schmahl, C., Berens, A. et al. Euthanasia and assisted suicide in patients with personality disorders: a review of current practice and challenges. bord personal disord emot dysregul 7 , 15 (2020). https://doi.org/10.1186/s40479-020-00131-9

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Investigating the relationship between euthanasia and/or assisted suicide and rates of non-assisted suicide: systematic review.

Published online by Cambridge University Press:  03 June 2022

Euthanasia and assisted suicide (EAS) are practices that aim to alleviate the suffering of people with life-limiting illnesses, but are controversial. One area of debate is the relationship between EAS and suicide rates in the population, where there have been claims that availability of EAS will reduce the number of self-initiated deaths (EAS and suicide combined). Others claim that legislation for EAS makes it acceptable to end one's own life, a message at variance with that of suicide prevention campaigns.

To examine the relationship between the introduction of EAS and rates of non-assisted suicide and self-initiated death.

We conducted a systematic review to examine the association between EAS and rates of non-assisted suicide and of self-initiated death. We searched PubMed, Scopus, PsycINFO and Science Direct, until 20 December 2021. Studies that examined EAS and reported data on population-based suicide rates were included.

Six studies met the inclusion criteria; four reported increases in overall rates of self-initiated death and, in some cases, increased non-assisted suicide. This increase in non-assisted suicide was mostly non-significant when sociodemographic factors were controlled for. Studies from Switzerland and Oregon reported elevated rates of self-initiated death among older women, consistent with higher rates of depressive illnesses in this population.

The findings of this review do not support the hypothesis that introducing EAS reduces rates of non-assisted suicide. The disproportionate impact on older women indicates unmet suicide prevention needs in this population.

The practices of a healthcare professional ending the life of a patient on request (euthanasia), and of a healthcare professional supplying a patient with the means to end their life (assisted suicide), have been proposed since the late 19th century as means to alleviate the suffering of people with life-limiting illnesses. However, it was not until the end of the 20th century that euthanasia and assisted suicide (EAS) became established in The Netherlands, and assisted suicide (but not euthanasia) became established in Switzerland and in the state of Oregon in the USA. In the 21st century other jurisdictions, including Canada, Columbia, New Zealand and the states of Victoria and Western Victoria in Australia, have adopted similar proposals variously termed ‘medical assistance in dying’, ‘medical aid in dying’, ‘physician aid in dying’, ‘voluntary assisted dying’, ‘physician-assisted dying’ or, more generally, ‘assisted dying’. In recent years, it has been argued that the term ‘assisted suicide’ is misleading because ‘the practice of physician aid in dying is distinct from the behaviour that has been traditionally and ordinarily described as “suicide”’. Reference Creighton, Cerel and Battin 1 Clearly it is possible to make a distinction between these practices. For example, it is possible to give separate estimates for rates of death under the provisions of ‘physician aid in dying’ legislation and rates of death by suicide in the general population. The question is whether the conceptual or empirical differences between these practices are such as to make the language of ‘assisted suicide’ inapplicable or inappropriate. This is highly contested. Reference Kious and Battin 2 – Reference Jones 5

Different terminal conditions are associated with EAS: one study based in The Netherlands reported that the most common diagnosis across the regions was cancer. Reference Koopman and Putter 6 Data from Belgium shows that rates of EAS for dementia have increased over time. Reference Dierickx, Deliens, Cohen and Chambaere 7 In some jurisdictions, EAS for primary psychiatric indications is permitted. These include The Netherlands, Belgium and Switzerland; Canada has recently passed legislation to permit EAS where there is no terminal illness, from 2023. Reference Evenblij, Pasman, Pronk and Onwuteaka-Philipsen 8 The criteria can be challenging to establish where the primary condition the person is seeking relief from is a mental illness, and research has recently attempted to identify how the criteria of ‘irremediable suffering’ is met. Reference van Veen, Evans, Ruissen, Vandenberghe, Beekman and Widdershoven 9

A recent systematic review of the characteristics of EAS for psychiatric indications suggested that the characteristics of people who die by EAS for mental health reasons are very similar to the characteristics of people who die by ‘traditional’ suicide, with high numbers having psychiatric disorders and a history of self-harm. Reference Calati, Olié, Dassa, Gramaglia, Guillaume and Madeddu 10 This review indicated that the demographics of the two groups have key differences, with EAS being more common in women, and traditional suicide more common in men. Suicidal ideation and behaviours may be associated with a range of mental illnesses and conditions, including psychosis, depression, personality disorders and even adjustment disorders. Reference Too, Spittal, Bugeja, Reifels, Butterworth and Pirkis 11 , Reference Casey, Jabbar, O'Leary and Doherty 12 Depression and suicidal thoughts are not uncommon in end-of-life care, and there are guidelines for the management of depression in palliative care that build on the evidence base for treatment in this area. Reference Rayner, Price, Evans, Valsraj, Higginson and Hotopf 13 At the very least, there are similarities between suicide in the general population and cases of EAS for mental health reasons or for cases of physical health with concomitant mental illness.

Terminology and rationale

This paper uses EAS as an umbrella term to refer to euthanasia and/or assisted suicide. The paper uses the term ‘non-assisted suicide’ for suicide that occurs in the general population without assistance of a medical kind, i.e. suicide that is not EAS. This paper uses ‘self-initiated death’ to cover death by EAS and/or by non-assisted suicide.

Although EAS has been legalised in several countries in the past 20 years, it remains subject to intense debate. One area of contention is the relationship between EAS and rates of suicide (either including or not including assisted suicide). Some proponents have claimed EAS will help reduce suicide, paradoxically, as people will feel comforted by the knowledge that there is an option for them to leave their suffering, should it become unbearable. Reference Posner 14 , Reference Nicolini, Kim, Churchill and Gastmans 15 They suggest that introducing EAS will reduce the number of self-initiated deaths or, even if self-initiated deaths increase, non-assisted suicides will be reduced, as people will be more likely to choose a death in a medically supported setting than a potentially violent death by suicide. Prompted by this, England's Health Secretary requested data on suicide rates among terminally ill people in April 2021, to provide evidence for the debate on the legalisation of EAS in England and Wales. Reference Iacobucci 16 Conversely, opponents of EAS have made the claim that making EAS available will not only increase the rate of self-initiated deaths, it will likely increase, or at least not decrease, rates of non-assisted suicide. The argument is that by making EAS legally available, society is making it acceptable to intentionally end one's own life, a message which is at variance with, and may undermine the consistent messaging of, suicide prevention groups and campaigns. Reference Berghmans, Widdershoven and Widdershoven-Heerding 17

In this review we examine the relationship between the introduction of EAS and rates of non-assisted suicide and self-initiated death. In particular, the review seeks to assess whether there is evidence of an association, either positive or negative, between the introduction of EAS and rates of non-assisted suicide, or between the introduction of EAS and rates of self-initiated death.

This study is a systematic review of the association between EAS and suicide. It was based on the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines for systemic review and meta-analysis. We did not require ethical approval as the study involved secondary analysis of anonymised data. A protocol was pre-registered with PROSPERO (identifier CRD42021277581).

To allow for a robust systematic review of the relationship between EAS and self-initiated death and/or non-assisted suicide, we conducted a search of the following databases: PubMed, Scopus, PsycINFO and Science Direct. We included all articles from the beginning of records until 2021. We restricted the search to those studies published in the English language and in peer-reviewed journals. We included original research papers only, and did not include case reports or series, or systematic or narrative reviews.

We used the following search terms: (euthanasia[title] OR assisted[title] OR ‘assistance in’[title] OR ‘aid in’[title]) AND (suicid*[title]). The searches were conducted on 21 December 2021. We based our search terms on the review conducted by Calati et al. Reference Calati, Olié, Dassa, Gramaglia, Guillaume and Madeddu 10 A hand search was conducted of the reference list of all studies selected for full review.

We included studies that focused on EAS and reported data on population-based suicide rates. Where the title suggested a paper suitable for inclusion we examined the abstract, and following this, where both title and abstract suggested an article eligible for inclusion, the full article was examined for suitability for inclusion based on the inclusion criteria. The citations of all included studies were hand-searched for any additional studies meeting the inclusion criteria. Any discrepancies between the two reviewers (C.J.A. and A.M.D.) were resolved by consultation with the third author (D.A.J.). Abstracts that did not refer to both EAS and rates of non-assisted suicide were excluded. Three reviewers (C.J.A., A.M.D. and D.A.J.) examined the full texts and graded them independently.

Quality assessment

A quality assessment was performed. We used two established assessments for assessing the quality of papers for inclusion: the Oxford quality assessment and the Newcastle–Ottawa Scale (NOS).

The NOS was used to assess the quality of non-randomised controlled studies. Reference Wells, Shea, O'Connell, Peterson, Welch and Losos 18 The NOS is a reliable tool for appraising the methodological quality of research. Reference Del Carpio, Paul, Paterson and Rasmussen 19 , Reference Cook and Reed 20 The NOS contains eight items, which are categorised into three dimensions: the selection, comparability and the outcomes of studies. The NOS ranges from zero to nine stars, as follows: selection of the study group (up to four stars/points), comparability of cohorts (up to two stars/points) and ascertainment of outcome (up to three stars/points). High-quality studies achieve more than seven stars, medium-quality studies between four and six stars and poor-quality studies achieve fewer than four stars.

The combined search strategies yielded a total of 11 273 titles to be screened, and 6808 remained after the removal of duplicates ( Fig. 1 ). Following review of titles, 199 remained. In most cases where titles were excluded, this was on the basis that the term ‘suicide’ occurred in the title only in the pairing ‘assisted suicide’ and there was no indication of relevance to non-assisted suicide. After examination of title and abstracts, 18 remained, and these studies were reviewed in full. No further studies were added following a hand search of the references of the included studies.

Fig. 1 Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) flow diagram for selection of studies in the systematic review. EAS, euthanasia and assisted suicide.

As all of these studies were retrospective and conducted at a population level, the level of detail regarding individuals was limited. We found six studies that met our inclusion criteria. The main details around methodology and primary findings are outlined in Table 1 .

Table 1 Characteristics and summary of the included studies examining population suicide rates and EAS

EAS, Euthanasia and Assisted Suicide; DWDA, Death with Dignity Act; WISQARS, Web-based Injury Statistics Query and Reporting System; WONDER, Wide Ranging Online Data for Epidemiologic Research; CDC, Center for Disease Control; OHA, Oregon Heath Authority; GSCM, Generalised synthetic control method; SCM, synthetic control method.

The earliest study that sought to establish the relationship between EAS and suicide was by Zalman and Stack. Reference Zalman and Stack 21 Published in 1996, this study aimed to examine whether legal changes around the acceptability of EAS were associated with changes in the non-assisted suicide rates (numbers of deaths by suicide per 100 000 population) in the nation as a whole. This was not legislation for EAS, but rather changes in case law, which resulted in widespread changes in availability and practice. No reliable data were available for the rates of EAS, which is a significant limitation of this analysis. There was a significant positive association between EAS and suicide rates at both time points on bivariate analysis; however, once divorce, religiosity (as measured by the sale of religious books) and economic strain (as measured by unemployment rates) were controlled for, the association was no longer statistically significant, although it remained positive. Given the size of the population, this positive change is meaningful in itself: statistical significance is used in smaller samples to estimate whether an association is the result of chance. It is worth noting that raw population suicide rates rose throughout the period of the study (i.e. through the various legislative changes examined) from approximately six per 100 000 to approximately ten per 100 000. Reference Zalman and Stack 21

In 2015, Jones and Paton examined EAS and non-assisted suicide rates in USA states where EAS had been legalised or decriminalised (Washington, Oregon, Vermont and Montana), and reported increased rates of both suicide and self-initiated death between 1990 and 2013. Reference Jones and Paton 22 Data on rates of non-assisted suicide were obtained from the Centers for Disease Control and Prevention in all four states, and data on EAS were obtained from the regulators in Washington and Oregon; however, data on EAS rates in Montana and Vermont were not available. Rates of self-initiated death (which Jones and Paton termed ‘total suicide’) rose in all four states, and this was significant after controlling for unemployment rate, income, race and ethnicity, religious adherence, laws on cannabis use and drink driving, and state-specific trends – an increase of 6.5% in the population of the four states, and an increase of 14.5% in those aged 65 years and older. Reference Jones and Paton 22 Rates of non-assisted suicide rose significantly by 4.4% after controlling for state and year effects and socioeconomic factors. However, this result was not robust to the inclusion of state-specific trends, after which the association was positive, but not statistically significant.

Also in 2015, Steck et al reported an overall reduction in suicide rates during the period of their study (1991–2008) based on the Swiss National Cohort. This reduction was broadly similar to the decline in suicide rates in European Union countries, and was associated with reduced access to lethal means (specifically firearms in the case of Switzerland) and improved access to mental healthcare. Reference Steck, Zwahlen and Egger 23 Despite this, there was a rise in the mortality rate in older people, especially women. There was a significant increase in people dying by EAS. Suicide by poisoning doubled between the years 1991–1993 and 2006–2008 in men aged 65–94 years, and tripled in women in the same age bracket, where 80% of deaths by poisoning were attributed to EAS. The paper suggests that ‘further research is needed to clarify the reasons for the tripling of rates in assisted suicides in women, and the doubling of rates in men, and to what extent this difference might reflect greater vulnerability of women compared with men’. Reference Steck, Zwahlen and Egger 23

A second study by the same authors, also from the Swiss National Cohort published the following year in the British Journal of Psychiatry , examined non-assisted suicide and EAS in the years 2003–2008, in a population of over 5 million people. Reference Steck, Egger and Zwahlen 24 Overall, there were 5708 deaths by non-assisted suicide and 1325 by EAS. It reported fluctuations in non-assisted suicide rates (900–983 per annum), and an increase in EAS rates from 187 in 2003 to 246 in 2008. Women were overrepresented in the EAS group compared with the non-assisted suicide group, and had higher proportions of mental illness. Living alone and having no children were associated with higher rates of non-assisted suicide and EAS. Non-assisted suicide and EAS were more prevalent in people without a religious affiliation, and higher in Protestants than in Catholics, but these differences were greater in EAS than in non-assisted suicide. Higher education was positively associated with EAS, but negatively with non-assisted suicide. The authors argued that increases in EAS changed the epidemiology of suicide in Switzerland such that ‘analyses that distinguish between assisted and unassisted suicide are required to inform preventative interventions’. Reference Steck, Egger and Zwahlen 24

In 2021, Nanner examined suicide rates in Belgium, using a synthetic control and generalised synthetic control methods (i.e. a control group was created by an algorithm) based on suicide rates in other European Union countries. The Netherlands and Switzerland were excluded from the study and although Luxembourg was included in the construction of the control, the study did not provide an analysis of the impact of EAS on non-assisted suicide rates in Luxembourg. Reference Nanner 25 Data on suicide rates were extracted from Organisation for Economic Co-operation and Development data, and there was no data reported on rates of EAS in Belgium. Both analyses generated positive but non-significant associations of EAS and non-assisted suicide, with generalise synthetic control methods estimating an increase in the non-assisted suicide rate of 0.73 per 100 000 population (95% CI −5.7 to 7.2). Reference Nanner 25

Canetto and McIntosh examined the relationship between EAS and non-assisted suicide in the state of Oregon in the USA over a 20-year period (1998–2018), following the legalisation of EAS. Reference Canetto and McIntosh 26 They calculated the mortality rates by non-assisted suicide and EAS, and reported that women aged over 65 years represented almost half of all EAS deaths, and that EAS was the most common cause of self-initiated death in older women. Over this period, rates of EAS among older women increased by 496.4%, and increased among older men by 563.6% (before the legislation, rates would have been zero, so increased rates are to be expected). In this time period, non-assisted suicide rose by 56.4% among older women, whereas it fell by 10.9% among older men. Suicide by firearms was the leading cause of self-initiated death among older men. All-cause self-initiated death rose both among older women and older men. Reference Canetto and McIntosh 26

Each of these studies was graded according to Oxford and NOS assessments ( Table 2 ). All studies scored similarly on the Oxford quality assessment. On the NOS, three scored as high-quality studies (Jones and Paton, Reference Jones and Paton 22 Steck et al Reference Steck, Zwahlen and Egger 23 and Steck et al Reference Steck, Egger and Zwahlen 24 ), two as medium-quality studies (Nanner, Reference Nanner 25 and Canetto and McIntosh, Reference Canetto and McIntosh 26 although Nanner was the stronger of the two) and one as poor-quality (Zalman and Stack Reference Zalman and Stack 21 ). Zalman and Stack Reference Zalman and Stack 21 suffered from lack of EAS data and lack of clarity as to whether suicide figures included EAS deaths, hence lack of case definition and no controls outside The Netherlands. Canetto and McIntosh Reference Canetto and McIntosh 26 provided data for EAS and non-assisted suicide, and stratified data by gender as well as age. However, they provided no controls for socioeconomic factors, and no estimate of significance for the changes in rates of non-assisted suicide and of self-initiated death. Nanner Reference Nanner 25 developed a control model based on other European countries and provided a measure of significance. However, the study was limited in that it did not consider EAS data and only included one EAS country. Jones and Paton Reference Jones and Paton 22 considered the introduction of EAS in four different states at four different time points, and were able to control for time and state effects as well as socioeconomic factors and state-specific linear trends. Both studies by Steck et al Reference Steck, Zwahlen and Egger 23 , Reference Steck, Egger and Zwahlen 24 provided a detailed comparison of characteristics of cases of EAS and non-assisted suicide by analysis of the Swiss National Cohort. This was a longitudinal study of mortality in the Swiss population, based on linkage of census data with mortality records from 1990 to 2008 and including data on more than 7 million individuals.

Table 2 Quality assessment of the included studies

NOS, Newcastle–Ottawa Scale. The NOS ranges from 0–9 stars as follows: selection of the study group (up to 4 stars/points), comparability of cohorts (up to 2 stars/points) and ascertainment of outcome (up to 3 stars/points). High-quality studies achieve more than 7 stars, medium-quality studies 4–6 stars and poor-quality studies fewer than 4 stars.

This systematic review found that there are few studies examining the association between EAS and rates of non-assisted suicide and/or rates of self-initiated death: only six studies met the inclusion criteria. The quality of these studies varied widely. All used different methods, thus precluding meta-analysis.

These studies cover four different jurisdictions: Switzerland, The Netherlands, Belgium and the USA. It is notable that most studies (four out of six) and all of those that scored as high quality (three), focused on Switzerland or the USA rather than on The Netherlands or Belgium. Neither of the studies from the Belgium or The Netherlands sought to analyse EAS data nor assess whether the introduction of EAS was associated with an increase in overall self-initiated death. Perhaps this is because EAS has long been an accepted part of practice in these jurisdictions.

Despite these divergences in analysis and the differences in practice between the four jurisdictions, there are some common results. No study found a negative association between EAS and non-assisted suicide. Canetto and McIntosh reported a reduction in non-assisted suicide in older men in Oregon between 1998 and 2018, but the overall non-assisted suicide rate in older people in that state increased over that period and the non-assisted suicide rate in older women increased by more than 50%. Reference Canetto and McIntosh 26 Furthermore, those studies that controlled for socioeconomic factors all found a positive association between EAS and rates of non-assisted suicide, although generally these results were not statistically significant. Reference Zalman and Stack 21 , Reference Jones and Paton 22 , Reference Nanner 25

There is no evidence from these studies to date to support the hypothesis that EAS reduces non-assisted suicide. More high-quality research is needed before it can be determined definitively whether there is no association between introduction of EAS and rates of non-assisted suicide, or whether there might be a small positive association, as suggested by some estimates in the study by Jones and Paton. Reference Jones and Paton 22

Nanner argues that, although there is no evidence that the availability of EAS prevents death by suicide, it may reduce suicidal feelings. Reference Nanner 25 He cites a study of 100 consecutive applications for euthanasia on the basis of a mental health in Belgium. Reference Thienpont, Verhofstadt, Van Loon, Distelmans, Audenaert and De Deyn 27 Of these, eight were accepted but patients withdrew because ‘knowing they had the option gave them peace of mind to continue living; ergo, there was some alleviation of suicidal ideation’. However, Nanner does not acknowledge that, of these 100 patients, 43 had died by the end study period: 35 by EAS, one by palliative sedation (used in Belgium as an alternative to EAS), six by non-assisted suicide and one from anorexia nervosa; eight were still pursuing their euthanasia requests. An intervention that results in 42% of suicidal patients dying by self-initiated death over a 5-year period would not appear to be an effective means to alleviate suicidal ideation.

In relation to self-initiated deaths, Jones and Paton provide evidence for a significant increase of 6.5% in the USA, after controlling for state and year effects, socioeconomic factors and state-specific trends. Reference Jones and Paton 22 The increase was 14.5% for those aged over 65 years. Steck et al Reference Steck, Zwahlen and Egger 23 found that although suicide rates in Switzerland generally declined, a ‘substantial increase’ in EAS in older women resulted in ‘a net increase in the rate of suicide overall [i.e., of self-initiated death] in women’. At that time, rates of self-initiated death in men in Switzerland were decreasing but less so in older men because of EAS. Furthermore, since that time, rates of EAS have risen in all jurisdictions where it is legally available, and this has driven increases in self-initiated death. Reference Jones 28 The change in rate of self-initiated death in Oregon between 1998 and 2018 for those aged over 65 years can be derived from the figures provided by Canetto and McIntosh. Reference Canetto and McIntosh 26 Over this period, self-initiated death among those aged over 65 years increased by 59.6%m with an increase in older men of 23.3% and an increase in older women of 190.2%. Nanner provides no figures for EAS. However, since the introduction of the euthanasia law in Belgium in 2002, officially reported deaths by EAS have increased consistently year on year, with 2022 deaths by EAS recorded in 2015, up from 235 deaths in 2003. Nanner reports no significant decrease in non-assisted suicide in Belgium between 2002 and 2015, which suggests a substantial increase in self-initiated death. Reference Nanner 25 Of these papers, only Jones and Paton provide confidence intervals for the estimated increase in self-initiated death after the introduction of EAS. Reference Jones and Paton 22 Nevertheless, Canetto and McIntosh and Steck both provide evidence of large increases in EAS driving overall increases in rates of self-initiated death, and no paper provides evidence that would conflict with this conclusion. Reference Steck, Zwahlen and Egger 23 , Reference Steck, Egger and Zwahlen 24 , Reference Canetto and McIntosh 26

One feature that was not part of the initial research question, but has emerged from the review, is the importance of considering gender when exploring associations between EAS, rates of non-assisted suicide and rates of self-initiated death. Canetto and McIntosh and both studies by Steck et al show that the change in self-initiated death after the introduction of EAS may be far greater in older women than in older men. Reference Steck, Zwahlen and Egger 23 , Reference Steck, Egger and Zwahlen 24 , Reference Canetto and McIntosh 26 This is an omission in the studies by Jones and Paton, and Nanner. Reference Jones and Paton 22 , Reference Nanner 25 The reasons why women may be more likely to die by EAS have been outlined variously as empowerment and disempowerment, depending on the perspective of the commentators. Data from suggests that women are more likely to seek EAS, with fears of being a burden: this consideration may be a factor in the gender disparity. Reference Canetto and McIntosh 26 , Reference Girma and Paton 29 These disparities may be associated with lifelong disadvantages in social, occupational and economic areas in the context of women perceiving they are not as highly valued as men, and may have internalised a view that their value is relative to their service to others. Women also have higher incidences of depressive illnesses, which may indicate an unmet mental health need.

Several authors have drawn on this literature on suicide contagion as the basis for claims about the potential impact of EAS on non-assisted suicide rates or rates of self-initiated death. Reference Frei, Schenker, Finzen, Dittmann, Kraeuchi and Hoffmann-Richter 30 – Reference Neuner, Hübner-Liebermann, Hajak and Hausner 32 However, whether there is such an effect and, if so, the size of this effect and the factors that might exacerbate or mitigate it, must be established independently. This review shows that there has been little quantitative research exploring this association to date. More research is urgently required to inform the debate around the legalisation of EAS in those jurisdictions where EAS is prohibited, and to inform suicide prevention strategy in jurisdictions where EAS is legally available.

In this review, the authors did not discover any other systematic literature review considering the potential association between EAS, rates of non-assisted suicide and rates of self-initiated death. This contrasts with the related topic of the impact of media reporting of suicides on suicide rates, variously termed suicide contagion or the ‘Werther effect’. This has been the focus of many original research papers and several systematic reviews and meta-analyses. Reference Cheng, Li, Silenzio and Caine 33 – Reference Niederkrotenthaler, Kirchner, Till, Sinyor, Tran and Pirkis 36 This evidence base has, in turn, informed the development of guidance for the media on reporting suicide, the implementation of which has itself been the subject of review. Reference Mishara and Dargis 37

In some jurisdictions where EAS has been decriminalised, it remains an offence to counsel, incite or encourage suicide. Reference Mishara and Weisstub 38 This suggests that, even in jurisdictions where it is legal, EAS should not be promoted, and that, in parallel with efforts to prevent non-assisted suicide, consideration should be given to strategies to address the factors that make people vulnerable to death by EAS. There is a clear need for mental healthcare and suicide prevention among people with physical illnesses who would be eligible for EAS in some jurisdictions. Reference Haste, Charlton and Jenkins 39 , Reference Cheatle 40 This review has found that that the availability of EAS is not associated with a reduction in non-assisted suicide, and that it may result in an increase in self-initiated deaths in women. The challenge of effective suicide prevention among older adults and those with chronic or terminal illnesses remains.

Limitations of this review include the small number of studies internationally that have explored the association between EAS and suicide in the general population. The primary research is itself limited by the challenges in controlling for the multitude of factors that affect both suicide and EAS. The only study that outlined the underlying diagnosis was the 2016 Swiss-based study by Steck et al, which reported that approximately 5% of people who died by EAS had a diagnosis of a mental illness. Reference Steck, Egger and Zwahlen 24 This reflects the paucity of research in this area and indicates that there is a need to build the evidence base for better management of mental illnesses associated with suicidality, especially in people with physical (including terminal) illnesses. A further limitation is the fact that the data included in this study were all derived from the peer-reviewed literature and did not include independently produced reports. Also, this review may have missed some studies published in non-English language journals, as they were excluded from the searches. Finally, there may be a future role for a more focused systematic review to examine the effects of gender on uptake of EAS in more detail, where available.

This systematic review suggests that there is no association between EAS and reduced suicide rates in the countries where it is legislated for. This has consequences for the overall suicide prevention efforts in these and other countries, and may have particular implications for older women. The paucity of studies that could be included in this systematic review indicates a need for robust research into the covariates of suicidal ideation and self-initiated death in countries where EAS is legislated for. There is a need for specific research to examine the reasons for the disproportionate impact on the mortality of older women, and the impact of such legislation on groups with pre-existing psychiatric diagnoses or mental health problems. Further research should include consultations with expert individuals and groups in the jurisdictions where EAS is legal.

In conclusion, the findings of this review do not support the claims made that the introduction of EAS results in reduced rates of non-assisted suicide. Several studies reported increases in overall rates of self-initiated death and, in some cases, increases non-assisted suicide, although this latter increase was generally not significant when sociodemographic factors were controlled for. The studies based in Switzerland and Oregon suggest that older women might be disproportionately vulnerable to EAS where this is legislated for, and when the higher rates of depressive illnesses among women are considered, this may indicate a need to address suicide prevention more assertively in this population.

The data that support the findings of this study are available from the corresponding author, A.M.D., upon reasonable request.

Author contributions

A.M.D., C.J.A. and D.A.J. all contributed to the formulation of the research question and designing of the study. A.M.D. and C.J.A. provided independent review of the data, with final inclusion of studies agreed by all authors. A.M.D. wrote the first draft of the manuscript. All authors were involved in writing the paper and approved the final draft.

This research received no specific grant from any funding agency, commercial or not-for-profit sectors.

Declaration of interest

D.A.J. is Director of the Anscombe Bioethics Centre, an academic institute that engages with the moral questions arising in clinical practice and biomedical research. All other authors declare no competing interests.

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• DOI: https://doi.org/10.1192/bjo.2022.71

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• Assisted Suicide: A Right or a Wrong?
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Assisted Suicide

A right or a wrong.

Is assisted suicide right or wrong? The issue is looked at through many perspectives and arguments.

Matthew Donnelly loved life. But Matthew Donnelly wanted to die. For the past thirty years, Matthew had conducted research on the use of X-rays. Now, skin cancer riddled his tortured body. He had lost his nose, his left hand, two fingers on his right hand, and part of his jaw. He was left blind and was slowly deteriorating. The pain was unrelenting. Doctors estimated that he had a year to live. Lying in bed with teeth clenched from the excruciating pain, he pleaded to be put out of his misery. Matthew wanted to die now. His pleas went unanswered. Then, one day, Matthew's brother Harold, unable to ignore Matthew's repeated cry, removed a .30 caliber pistol from his dresser drawer, walked to the hospital, and shot and killed his brother. Harold was tried for murder.

Rapid and dramatic developments in medicine and technology have given us the power to save more lives than was ever possible in the past. Medicine has put at our disposal the means to cure or to reduce the suffering of people afflicted with diseases that were once fatal or painful. At the same time, however, medical technology has given us the power to sustain the lives (or, some would say, prolong the deaths) of patients whose physical and mental capabilities cannot be restored, whose degenerating conditions cannot be reversed, and whose pain cannot be eliminated. As medicine struggles to pull more and more people away from the edge of death, the plea that tortured, deteriorated lives be mercifully ended grows louder and more frequent. Californians are now being asked to support an initiative, entitled the Humane and Dignified Death Act, that would allow a physician to end the life of a terminally ill patient upon the request of the patient, pursuant to properly executed legal documents. Under present law, suicide is not a crime, but assisting in suicide is. Whether or not we as a society should pass laws sanctioning "assisted suicide" has generated intense moral controversy.

Supporters of legislation legalizing assisted suicide claim that all persons have a moral right to choose freely what they will do with their lives as long as they inflict no harm on others. This right of free choice includes the right to end one's life when we choose. For most people, the right to end one's life is a right they can easily exercise But there are many who want to die, but whose disease, handicap, or condition renders them unable to end their lives in a dignified manner. When such people ask for assistance in exercising their right to die, their wishes should be respected.

Furthermore, it is argued, we ourselves have an obligation to relieve the suffering of our fellow human beings and to respect their dignity. Lying in our hospitals today are people afflicted with excruciatingly painful and terminal conditions and diseases that have left them permanently incapable of functioning in any dignified human fashion. They can only look forward to lives filled with yet more suffering, degradation, and deterioration. When such people beg for a merciful end to their pain and indignity, it is cruel and inhumane to refuse their pleas. Compassion demands that we comply and cooperate.

Those who oppose any measures permitting assisted suicide argue that society has a moral duty to protect and to preserve all life. To allow people to assist others in destroying their lives violates a fundamental duty we have to respect human life. A society committed to preserving and protecting life should not commission people to destroy it.

Further, opponents of assisted suicide claim that society has a duty to oppose legislation that poses a threat to the lives of innocent persons. And, laws that sanction assisted suicide inevitably will pose such a threat. If assisted suicide is allowed on the basis of mercy or compassion, what will keep us from "assisting in" and perhaps actively urging, the death of anyone whose life we deem worthless or undesirable? What will keep the inconvenienced relatives of a patient from persuading him or her to "voluntarily" ask for death? What will become of people who, once having signed a request to die, later change their minds, but, because of their conditions, are unable to make their wishes known? And, once we accept that only life of a certain quality is worth living, where will we stop? When we devalue one life, we devalue all lives. Who will speak for the severely handicapped infant or the senile woman?

Finally, it is argued that sanctioning assisted suicide would violate the rights of others. Doctors and nurses might find themselves "pressured" to cooperate in a patient's suicide. In order to satisfy the desires of a patient wanting to die, it's unjust to demand that others go against their own deeply held convictions.

The case for assisted suicide is a powerful one--appealing to our capacity for compassion and an obligation to support individual choice and self determination. But, the case against assisted suicide is also powerful for it speaks to us of a fundamental reverence for life and the risk of hurling down a slippery slope toward a diminished respect for life. With legislation in the offing, we're compelled to choose which values are most important and to cast our vote.

This article was originally published in Issues in Ethics - V. 1, N.1 Fall 1987

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Emanuel EJ. Euthanasia and Physician-Assisted Suicide : A Review of the Empirical Data From the United States . Arch Intern Med. 2002;162(2):142–152. doi:10.1001/archinte.162.2.142

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Euthanasia and Physician-Assisted Suicide : A Review of the Empirical Data From the United States

From the Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, National Institutes of Health, Bethesda, Md.

For more than a decade, there has been an intense debate about the ethics and legality of euthanasia and physician-assisted suicide (PAS) in the United States. 1 - 5 In June 1997, the US Supreme Court unanimously ruled that there is neither a constitutional right nor a constitutional prohibition to euthanasia or PAS. 6 , 7 This permitted Oregon to experiment with legalizing PAS. During this decade, most other states have consistently opposed legalization. In the weeks after the US Supreme Court decision, the Florida Supreme Court also ruled that there is no constitutional right to PAS. 8 At least 7 state legislatures have voted to explicitly prohibit euthanasia and PAS. 9 Indeed, a bill to legalize euthanasia or PAS has been considered by a full chamber of a state legislature in only one state, Maine, and that bill was defeated 99 to 42. 10 In November 1998, 70% of the voters of Michigan resoundingly defeated a referendum to legalize PAS, while in November 2000 Maine voters also rejected legalizing PAS. 11

The extensive debates for and against euthanasia and PAS have made the arguments more refined, subtle, and sophisticated. Yet the essential claims—arguments based on patients' autonomy to control their own lives and beneficence in relieving excruciating pain and suffering—have remained remarkably the same since the late 19th-century debates about euthanasia. 5 , 12 However, the current debate has spawned significant and unprecedented empirical research, illuminating many aspects of and claims about euthanasia and PAS. This article reviews the empirical data about euthanasia and PAS in the United States regarding: (1) the public's attitudes, (2) physicians' attitudes, (3) physicians' practices and experiences, (4) nonphysician health care professionals' attitudes and practices, and (5) patients' attitudes and experiences. It will conclude with a summary of the most important question in need of additional empirical inquiry.

In this article, whenever the term euthanasia is used, voluntary active euthanasia is meant. Other forms of euthanasia, nonvoluntary or involuntary, have not been extensively advocated or studied. 5

There have been innumerable surveys of the American public on euthanasia and PAS. 13 - 15 Most information derives from a few questions added to general surveys and do not probe deeply; only a few surveys have been in-depth analyses. In general, opponents and proponents of euthanasia or PAS endorse 4 conclusions from these data.

First, depending on how questions are worded and the types of choices offered, public support for euthanasia or PAS can vary widely, from about 34% to about 65% ( Table 1 ). 13 , 14 In other words, some Americans are firm in their views of euthanasia and PAS, while others are more labile. The best way to understand public opinion might be by the "Rule of Thirds." Roughly, one third of Americans seem to support voluntary active euthanasia or PAS no matter what the circumstances. For instance, 29.3% of Americans support euthanasia or PAS for terminally ill patients who are not in pain but desire these interventions because they view life as meaningless. Similarly, 36.2% support euthanasia or PAS for terminally ill patients who give as their reason not wanting to be a burden on their family. 16 These are the approximate one third whose support for euthanasia or PAS is not affected by the interventions, the patient's motivations, or the circumstances. Conversely, another third or so of Americans oppose euthanasia or PAS no matter what the circumstances. Almost all the surveys report the highest levels of support for euthanasia or PAS to be about 65%. 13 - 16 These data mean that roughly one third of Americans—the difference between 100% of the public and the 65% who support euthanasia for patients in pain—oppose euthanasia or PAS even for terminally ill patients who are experiencing unremitting pain, despite optimal management. The remaining third or so of Americans constitute the volatile public. They support euthanasia or PAS in some circumstances, usually involving extreme pain, but oppose it in other circumstances, such as for reasons of indignity or because the patient does not want to be a burden ( Table 2 ).

Consequently, support for euthanasia or PAS is not as extensive as the reports that two thirds of Americans support these interventions make it appear. Furthermore, for few of these people is legalizing euthanasia or PAS a leading issue, the primary element that will determine their vote. In this sense, unlike abortion, euthanasia and PAS do not appear to be litmus test issues.

Second, surveys that assess trends over time indicate that the significant rise in support for euthanasia and PAS occurred in the mid 1970s, not the 1990s. 14 Indeed, since the mid 1970s, support for these interventions has been constant ( Table 1 ). Interestingly, this is similar to the trends found in the Netherlands. 17 Consequently, the extensive public debates during the last decade do not appear to have shifted public opinion significantly.

Third, while medical ethicists, philosophers, lawyers, and others have spent much time debating whether euthanasia is fundamentally different from PAS and elucidating potential distinctions, the American public does not seem to make much of the distinction. Polls show that Americans support euthanasia at the same rate that they support PAS ( Table 2 ). 15 Conversely, the public does distinguish withdrawing life support or providing pain medications, even with the increased risk of respiratory depression and death from euthanasia and PAS. 14 , 15 Despite arguments by some philosophers suggesting that there is no moral difference, 18 more than 90% of the public deem withdrawing life support as ethical, while at best 65% support euthanasia or PAS. 15

Finally, certain sociodemographic characteristics consistently predict support and opposition to euthanasia or PAS. 13 - 15 Catholics and people who report themselves to be more religious are significantly more opposed to euthanasia or PAS. Similarly, African Americans and older individuals are significantly more opposed to euthanasia or PAS. Finally, some, but not all, surveys suggest that women are significantly more opposed to euthanasia or PAS. Interestingly, patients with terminal illnesses, such as cancer and chronic obstructive pulmonary disease, have attitudes that are almost identical to the public's. 16 In other words, having a serious, life-threatening illness itself does not seem to alter attitudes toward the permissibility or opposition to euthanasia or PAS. Similarly, being a caregiver for a terminally ill patient or a recently bereaved caregiver does not seem to affect attitudes toward euthanasia or PAS. 16

During the last decade, US physicians have been extensively surveyed about euthanasia and PAS. 19 - 48 Many of the surveys, especially the early ones, are problematic in their methods. 5 The surveyed cohorts are narrow or biased, and the response rates are low. More important, questions are frequently worded poorly and abstractly in a confusing, emotionally laden, or biased manner. For instance, they often conflate terminating medical treatments with euthanasia or ask whether euthanasia or PAS is never ethically justified. Furthermore, many of the questions use multiple hypothetical propositions—requiring leaps of imagination by respondents—that are known to make the data unreliable. For instance, physicians are frequently asked, if euthanasia or PAS were legalized, would there be some circumstances in which they would be willing to perform euthanasia or PAS? In addition, there has been no consistency among the questions, making it difficult to compare the data across different surveys. In recent years, the surveys have addressed some of these problems, making the data more reliable, although there still appears to be the problem that physicians confound euthanasia with terminating life-sustaining treatments and euthanasia with PAS. 16 , 43

Surveys of physicians' attitudes have evaluated 3 issues that have not usually been clearly distinguished: (1) belief that euthanasia or PAS is ethically justifiable, (2) support for legalization of either intervention, and (3) willingness to perform either intervention ( Table 3 ). 19 - 48 The more reliable surveys find that most US physicians do not view euthanasia or PAS as ethical. The major exceptions seem to ask abstractly whether these interventions might be justifiable "in some circumstances" ( Table 3 ). More typical are surveys that report that fewer than half of physicians support euthanasia or PAS, or those in which respondents find suicide rational in some cases but believe that physicians should not assist ( Table 3 ).

Regarding legalization, among physicians there seems to be no consistent pattern, probably because questions ask about specific legislation that varies and because respondents may not be familiar with the particular facets of the legislation. For instance, in a survey of Michigan physicians, Bachman et al 32 could demonstrate most physicians (56.6%) supporting PAS only when they were forced to choose either legalization or an explicit ban; without being forced into this choice, only 38.9% supported permitting PAS. Consistently, few physicians would be willing to perform euthanasia or PAS if either were legalized ( Table 3 ).

These data demonstrate another important factor: unlike the American public, US physicians distinguish between euthanasia and PAS. They are much more likely to support providing PAS than euthanasia. 15 , 20 , 25 , 29 , 37 , 47 , 48 Only a few studies 19 , 35 , 37 , 42 have found most physicians supporting euthanasia. Therefore, unlike the American public, support for euthanasia or PAS among US physicians crucially depends on the intervention being asked about. 15 This is different from Dutch physicians, who do not seem to distinguish euthanasia and PAS. 47

There are important factors associated with support for euthanasia or PAS. Like the American public, US physicians who are Catholic or religious are significantly less likely to support euthanasia or PAS. 15 , 21 , 25 , 29 , 32 , 33 , 38 , 42 , 43 , 47 , 48 Similarly, surveys have reported certain specialties as more supportive of euthanasia or PAS than others. 29 , 31 , 33 , 43 , 48 Surgical oncologists are more likely to support euthanasia or PAS than medical oncologists. Psychiatrists and obstetricians and gynecologists are more supportive of euthanasia or PAS, with internists, especially oncologists, less supportive. Still, others have found family or general practitioners as more supportive than internists.

Finally, at least among US oncologists, there appears to be a significant decline in support for euthanasia or PAS between the early and late 1990s. 15 , 44 , 48 Between 1994 and 1998, support for euthanasia and PAS significantly declined among oncologists in the scenario of a patient terminally ill with cancer who had unremitting pain. 15 , 48 Although it is hard to know precisely why this decline has occurred, 2 explanations seem reasonable. The recent focus on end-of-life care has revealed the multiplicity of interventions, besides euthanasia and PAS, that can be used to improve the quality of life of the terminally ill. Consequently, euthanasia and PAS seem less necessary and desirable to ensure good end-of-life care. Furthermore, support tends to be higher when considering euthanasia and PAS in the abstract, as a philosophical question. But as they become more real and personal and physicians may be called on to actually perform these interventions, physicians are likely to be less supportive. This may also partially explain why psychiatrists, obstetricians, surgeons, and others who rarely care for terminally ill patients are more supportive than oncologists.

Numerous studies have documented the practices of US physicians regarding euthanasia or PAS ( Table 4 ). The precise proportion of physicians who have received such requests is unclear because there is significant variation in the reported frequencies. The different reported rates of requests for euthanasia and PAS may reflect methodological issues, such as: (1) the differences between mailed and telephone surveys; (2) the different dates of the surveys, with physicians being more willing to acknowledge performing these interventions in later years, as the debate becomes more public and accepted; (3) the different regions of the country, with those in the West having requests more frequently than those in the New England or North Central regions 43 ; and (4) the different investigators, with physicians more willing to acknowledge performing these interventions when the survey comes from investigators from the same state or a colleague in the same specialty. 15 , 30 , 32 - 34 , 39 , 43 , 48 However, in general, it appears that oncologists have received many more requests than nononcologists. Fewer than 20% of nononcologists have received requests for PAS, while it appears that among oncologists as many as 50% have received requests for euthanasia or PAS ( Table 4 ). This is probably because oncologists are more likely to care for dying patients than internists, surgeons, neurologists, or other physicians. Nevertheless, even among oncologists, the survey results vary considerably, suggesting residual methodological issues.

In general, physicians who have received requests have received few requests. 34 , 39 , 43 , 45 For instance, Meier et al 43 report that, overall, physicians who received requests for PAS received a median of 3 requests (range, 1-100) in their careers and a median of 4 requests (range, 1-50) for euthanasia. Carver et al 45 reported that, among neurologists who received requests, the mean number of requests for PAS was 7 and was 5 for euthanasia.

Many studies indicate that a small, but definite, proportion of US physicians have performed euthanasia or PAS, despite its being illegal. Again, the data provide conflicting evidence on the precise frequency of such interventions, with reported frequencies varying more than 6-fold even among the best studies ( Table 4 ). As with requests, oncologists generally report having performed euthanasia or PAS more frequently. Much of this variation may be attributable to the reasons already cited, especially the differences in specialties. However, there is another methodological concern. The study by Meier et al 43 is the only study to have reported that more US physicians perform euthanasia than PAS. This finding contrasts with the data showing that US physicians are significantly more supportive of PAS than euthanasia. 15 , 20 , 25 , 29 , 37 , 47 , 48 This result may be because physicians were classifying cases of terminating care as euthanasia. As reported by Emanuel et al, 49 despite careful wording, physicians frequently confound euthanasia and terminating life-sustaining treatments, and this may be more common and harder to control for in mailed rather than telephone surveys.

When US physicians have performed euthanasia or PAS, they have done so rarely. Meier et al 43 reported that the median number of PAS cases was 2 (range, 1-25), and the median number of euthanasia cases also 2 (range, 1-150). A recent survey of oncologists by the American Society of Clinical Oncology reported that, of those who had performed PAS, 37% had done so only once in their careers, while 18% had done so 5 or more times. 48 Similarly, among the US oncologists who had performed euthanasia, more than half had done so only once, and just 12% had done so 5 or more times. 48

Beyond the rates of requests and performance of euthanasia and PAS, what do physicians do when they receive a request and when they perform euthanasia or PAS? Back et al 34 reported that initially 76% of physicians increased treatment of physical symptoms, 65% treated depression and anxiety, and 24% referred the patient for a psychiatric evaluation. Similarly, Meier et al 43 reported that 71% of physicians responded to requests for euthanasia or PAS by increasing analgesic treatment, while 30% used fewer life-prolonging therapies and 25% prescribed antidepressants.

Regarding the actual performance of euthanasia and PAS, Meier 43 and Emanuel 49 and their colleagues provide similar data, at least as regards PAS ( Table 5 ). They show that, while safeguards are adhered to overall, there are a myriad of problems. For instance, although most patients initiated the request for PAS, almost half of them did not repeat the request. Most important, both studies show that about 5% of patients were unconscious at the time of death and could not, therefore, provide concurrent consent. More than 95% of patients had severe symptoms, but according to Meier et al, only 54% had significant pain, while according to Emanuel et al, 84% of the patients with cancer who received PAS had substantial pain. In 40% to 54% of cases, the patients were getting hospice care, at least one measure of quality end-of-life care. Similarly, in many cases, patients who receive PAS had long-term relationships (>1 year) with their physicians. Finally, there are divergent data, ranging from 20% to 40%, on what proportion of patients provided with medications or a prescription ultimately does not use them. Differences in underlying disease may partially account for differences in the data between these 2 studies; Meier et al provide data on patients with many different terminal illnesses, whereas Emanuel et al interviewed oncologists and provided data on patients dying of cancer.

Two studies have examined the effect on physicians of performing euthanasia or PAS. Meier et al 43 and Emanuel et al 49 reported that most physicians were comfortable with having performed euthanasia or PAS. According to Meier et al, 19% of physicians were uncomfortable after performing PAS, and 12% were uncomfortable after performing euthanasia. (This lower proportion of uncomfortableness after performing euthanasia may reflect that many of these so-called euthanasia cases were actually cases of terminating life-sustaining treatments.) They also found that in similar circumstances only 1% would not comply with PAS and 7% would not comply with euthanasia. Emanuel et al reported that 25% regretted performing euthanasia or PAS and that 15% had adverse emotional reactions to performing euthanasia or PAS. At least in the cases reported by Emanuel et al, these reactions did not seem related to fear of prosecution.

Finally, there is some disagreement about failed PAS attempts. Emanuel et al 49 reported that in 15% of cases PAS failed; that is, patients were given a prescription or attempted suicide, but did not die. Ganzini et al 52 recently reported that there had been no failed PAS attempts in Oregon since legalization. The reports from the first 2 years' experience by the Oregon Health Division, Portland, also show no failed PAS attempts. 53 As Nuland 54 notes, the lack of problems with PAS in these reports from Oregon contrasts with the recently reported Dutch experience, in which 7% of PAS cases had complications and in 16% it was taking "longer than expected." 55 Ultimately, in 18.4% of PAS cases in the Netherlands, physicians intervened to administer lethal medications, converting PAS cases into euthanasia. 53 The importance of this for the United States relates to the possibility of legalizing PAS without legalizing euthanasia, and what is to be done in the cases of failed PAS. As the data demonstrate, in the Netherlands, the accepted norm is to administer lethal medications—that is, perform euthanasia—in cases of failed PAS. This would not be permitted in the United States if euthanasia remains illegal. If the data from Emanuel et al and the Dutch investigators are correct, there may be serious dilemmas for physicians if PAS is legalized but euthanasia is not.

There have been at least 9 surveys of nonphysician health care professionals (mostly nurses) regarding euthanasia and PAS ( Table 6 ). 38 , 56 - 64 Overall, these studies are not as rigorous in their methods as the best studies of physicians or patients. They demonstrate that about half of nonphysician health professionals support euthanasia or PAS in some circumstances, and that fewer than one third have received requests for euthanasia or PAS. Again, the type of religion and the strength of religious beliefs are associated with support for euthanasia and PAS. The data regarding performance of euthanasia or PAS by nurses vary widely, with one study showing that about 16% have participated in euthanasia or PAS, and others showing that fewer than 5% have done so ( Table 6 ).

Although some studies have examined patients' wishes to hasten death and suicidal ideation, only a few studies 15 , 16 , 52 , 53 , 65 have actually examined the attitudes and experiences of US patients regarding euthanasia and PAS ( Table 5 ). Breitbart et al 50 examined patients with human immunodeficiency virus and acquired immunodeficiency disease syndrome (HIV/AIDS) in New York City; Ganzini et al 51 interviewed patients with amyotrophic lateral sclerosis in Oregon; and Emanuel et al 15 surveyed patients with cancer in Massachusetts. In addition, there are data reporting on the first 2 years' experience of legalized PAS in Oregon, involving some 43 cases. 53 , 65 There are additional data on the practices of euthanasia and PAS among patients determined to be terminally ill by their physicians. 16 Four major conclusions can be drawn from these data.

First, mainly patients with cancer use euthanasia and PAS. Among the first 43 cases of PAS in Oregon, 72% of the patients had cancer. 53 Meier et al 43 report that among patients receiving PAS, 70% had cancer, while among those receiving euthanasia, only 23% had cancer. These data are comparable to the data from the Netherlands, in which 80% of euthanasia and 78% of PAS cases involved patients with cancer, 66 and from the Northern Territory, Australia, where all 7 patients who received euthanasia when it was briefly legalized had cancer. 67

Second, it appears that pain is not a major determinant of interest in or use of euthanasia or PAS ( Table 5 ). Almost all of these studies—as well as the interviews with physicians who have administered euthanasia and PAS 34 , 43 —have shown that pain is not a predictor of patients' interest in euthanasia or PAS. For instance, among the patients receiving PAS in Oregon, only 1 of 15 had uncontrolled pain. 65 Breitbart et al 50 reported that pain, pain intensity, and pain-related functional impairment were not associated with interest in PAS among patients with HIV/AIDS. Emanuel et al 15 reported that for oncology patients, pain was not associated with personal interest in euthanasia or PAS. However, they did find that for terminally ill patients, pain was among the factors associated with personally considering euthanasia or PAS. 16

Third, depression, hopelessness, and general psychological distress are consistently associated with interest in PAS and euthanasia ( Table 5 ). Breitbart et al 50 reported that depression and hopelessness were strongly related to interest in PAS for patients with HIV/AIDS. Emanuel et al 15 reported that, for oncology patients and terminally ill patients, depressive symptoms were associated with personal interest in euthanasia or PAS, such as discussing these interventions and hoarding drugs for the purpose of PAS. Ganzini et al 51 (p968) reported that hopelessness, but not depression, was associated with "considering taking a prescription for a medicine whose sole purpose was to end my life."

Fourth, Emanuel et al 16 reported that among terminally ill patients, the extent of caregiving needs was associated with interest in euthanasia or PAS. Ganzini et al, 51 however, reported that there was not an association between the burden of caring for the patients and whether caregivers supported or opposed a patient's request for PAS.

Although it is known that PAS and euthanasia occur in a small proportion of all deaths, what is not known is the precise frequency these interventions are used. In the Netherlands, 3.4% of all deaths are by euthanasia and PAS, including involuntary euthanasia. 66 In Oregon, the proportion of all deaths by PAS reported to the Oregon Health Division is 0.09%. 53 Such a low rate raises skepticism that not all cases of physician-assisted death are reported. 54 Emanuel et al 16 have reported a rate of 0.4% among competent terminally ill US patients.

There are 6 major areas related to euthanasia and PAS in need of additional research in the United States. First, there are few data on the relationship between euthanasia or PAS and the provision of optimal end-of-life care. Are euthanasia and PAS used as truly last-ditch interventions for patients refractory to appropriate end-of-life interventions? Or are they used as substitutes for optimal end-of-life care? The American Society of Clinical Oncology survey suggested that there was a relationship between not being able to get dying patients all the care they needed and use of euthanasia and PAS. 46 This result needs confirmation. Furthermore, we need to understand what are the predictors of physicians who come to use euthanasia and PAS only after trying optimal care, vs those who use these interventions as a substitute. Is this the result of structural or financial barriers to optimal end-of-life care, or is it the result of problems on the part of physicians, such as lack of training in end-of-life care?

Second, there are divergent data on how frequently PAS fails and no data on what is done when it does fail. If, in the United States, only PAS will be legalized, what do physicians do when it fails?

Third, there is no information on the short- and long-term effects of euthanasia and PAS on the surviving family members of the patients. 16 Immediately after the interventions, families may have the psychological need to be supportive of the decision and believe that the right thing was done. However, with the passage of time, they may have different views.

Fourth, there are conflicting data on the actual frequency of euthanasia and PAS. These interventions occur, but how frequently? It may be that conducting a death certificate follow-back study modeled on the Dutch studies 55 , 66 will be the best way to obtain accurate data on the frequency of these interventions, as well as the reasons for the interventions, the palliative measures taken, and the effects on the family.

Fifth, there are no data on the frequency of nonvoluntary euthanasia in the United States. In the Netherlands, nonvoluntary euthanasia occurs in 0.7% of all deaths. 55 The rate may be higher in the United States, given the expense and financial problems associated with end-of-life care. 68 , 69 Issues of coercion and of performing euthanasia on patients who are not competent are serious, and there are inadequate data on these events in the United States.

Finally, there are no data on euthanasia and PAS among children. Although death is rare among children, annually there are several thousand deaths among children with cancer and HIV/AIDS. These deaths tend to occur after significant and prolonged illnesses, and symptom management is less than optimal. 70 The American Society of Clinical Oncology survey of US oncologists suggests that there are instances of pediatric euthanasia or PAS. 48 Why these occur and how they are handled are also important and controversial issues.

Unfortunately, each of these issues is difficult to study because euthanasia and PAS are rare events, requiring screening of many physicians to identify just a few cases. Therefore, such studies will be large and expensive.

During the last decade, there has been a substantial amount of empirical research conducted on euthanasia and PAS in the United States. This empirical research has revealed many unexpected findings that have significantly affected the public debate. Such findings include: (1) Public support for euthanasia and PAS is closely linked with the reasons patients want these interventions; most of the public support the interventions only for patients in excruciating pain. (2) Yet, pain does not appear to be the primary factor motivating patients to request euthanasia and PAS; depressive symptoms, hopelessness, and other psychological factors appear to motivate patients' requests for euthanasia and PAS. Therefore, public support conflicts with the actual facts about patient interest in euthanasia and PAS. (3) Euthanasia and PAS occur, albeit at a low rate. Indeed, more than 99% of all dying Americans do not have these interventions, and even in the Netherlands, more than 96% of all decedents do not have these interventions.

Accepted for publication May 1, 2001.

Corresponding author and reprints: Ezekiel J. Emanuel, MD, PhD, Department of Clinical Bioethics, Warren G. Magnuson Clinical Center, Bldg 10, Room 1C118, National Institutes of Health, Bethesda, MD 20892-1156.

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Legalizing euthanasia or assisted suicide: the illusion of safeguards and controls

Euthanasia or assisted suicide—and sometimes both—have been legalized in a small number of countries and states. In all jurisdictions, laws and safeguards were put in place to prevent abuse and misuse of these practices. Prevention measures have included, among others, explicit consent by the person requesting euthanasia, mandatory reporting of all cases, administration only by physicians (with the exception of Switzerland), and consultation by a second physician.

The present paper provides evidence that these laws and safeguards are regularly ignored and transgressed in all the jurisdictions and that transgressions are not prosecuted. For example, about 900 people annually are administered lethal substances without having given explicit consent, and in one jurisdiction, almost 50% of cases of euthanasia are not reported. Increased tolerance of transgressions in societies with such laws represents a social “slippery slope,” as do changes to the laws and criteria that followed legalization. Although the initial intent was to limit euthanasia and assisted suicide to a last-resort option for a very small number of terminally ill people, some jurisdictions now extend the practice to newborns, children, and people with dementia. A terminal illness is no longer a prerequisite. In the Netherlands, euthanasia for anyone over the age of 70 who is “tired of living” is now being considered. Legalizing euthanasia and assisted suicide therefore places many people at risk, affects the values of society over time, and does not provide controls and safeguards.

1. INTRODUCTION

Euthanasia is generally defined as the act, undertaken only by a physician, that intentionally ends the life of a person at his or her request 1 , 2 . The physician therefore administers the lethal substance. In physician-assisted suicide ( pas ) on the other hand, a person self-administers a lethal substance prescribed by a physician.

To date, the Netherlands, Belgium, and Luxembourg have legalized euthanasia 1 , 2 . The laws in the Netherlands and Luxembourg also allow pas . In the United States, the states of Oregon and Washington legalized pas in 1997 and 1999 respectively, but euthanasia remains illegal 3 . The situation in the state of Montana is currently unclear; a bill legalizing pas was passed by the state legislature in 2010, but was recently defeated by the state’s Senate Judiciary Committee.

In the Netherlands, euthanasia and pas were formally legalized in 2001 after about 30 years of public debate 1 . Since the 1980s, guidelines and procedures for performing and controlling euthanasia have been developed and adapted several times by the Royal Dutch Medical Association in collaboration with that country’s judicial system. Despite opposition, including that from the Belgian Medical Association, Belgium legalized euthanasia in 2002 after about 3 years of public discourse that included government commissions. The law was guided by the Netherlands and Oregon experiences, and the public was assured that any defects in the Dutch law would be addressed in the Belgian law. Luxembourg legalized euthanasia and pas in 2009. Switzerland is an exception, in that assisted suicide, although not formally legalized, is tolerated as a result of a loophole in a law dating back to the early 1900s that decriminalizes suicide. Euthanasia, however, is illegal 4 . A person committing suicide may do so with assistance as long as the assistant has no selfish motives and does not stand to gain personally from the death. Unlike other jurisdictions that require euthanasia or assisted suicide to be performed only by physicians, Switzerland allows non-physicians to assist suicide.

In all these jurisdictions, safeguards, criteria, and procedures were put in place to control the practices, to ensure societal oversight, and to prevent euthanasia and pas from being abused or misused 5 . Some criteria and procedures are common across the jurisdictions; others vary from country to country 5 , 6 . The extent to which these controls and safeguards have been able to control the practices and to avoid abuse merits closer inspection, particularly by jurisdictions contemplating the legalization of euthanasia and pas . The present paper explores the effectiveness of the safeguards and the “slippery slope” phenomenon.

2. SAFEGUARDS AND THEIR EFFECTIVENESS

2.1. voluntary, written consent.

In all jurisdictions, the request for euthanasia or pas has to be voluntary, well-considered, informed, and persistent over time. The requesting person must provide explicit written consent and must be competent at the time the request is made. Despite those safeguards, more than 500 people in the Netherlands are euthanized involuntarily every year. In 2005, a total of 2410 deaths by euthanasia or pas were reported, representing 1.7% of all deaths in the Netherlands. More than 560 people (0.4% of all deaths) were administered lethal substances without having given explicit consent 7 . For every 5 people euthanized, 1 is euthanized without having given explicit consent. Attempts at bringing those cases to trial have failed, providing evidence that the judicial system has become more tolerant over time of such transgressions 5 .

In Belgium, the rate of involuntary and non-voluntary euthanasia deaths (that is, without explicit consent) is 3 times higher than it is in the Netherlands 8 , 9 . (“Involuntary euthanasia” refers to a situation in which a person possesses the capacity but has not provided consent, and “non-voluntary euthanasia,” to a situation in which a person is unable to provide consent for reasons such as severe dementia or coma). A recent study found that in the Flemish part of Belgium, 66 of 208 cases of “euthanasia” (32%) occurred in the absence of request or consent 10 . The reasons for not discussing the decision to end the person’s life and not obtaining consent were that patients were comatose (70% of cases) or had dementia (21% of cases). In 17% of cases, the physicians proceeded without consent because they felt that euthanasia was “clearly in the patient’s best interest” and, in 8% of cases, that discussing it with the patient would have been harmful to that patient. Those findings accord with the results of a previous study in which 25 of 1644 non-sudden deaths had been the result of euthanasia without explicit consent 8 .

Some proponents of euthanasia contend that the foregoing figures are misrepresentative, because many people may have at some time in their lives expressed a wish for or support of euthanasia, albeit not formally. The counterargument is that the legal requirement of explicit written consent is important if abuse and misuse are to be avoided. After all, written consent has become essential in medical research when participants are to be subjected to an intervention, many of which pose far lesser mortality risks. Recent history is replete with examples of abuse of medical research in the absence of explicit informed consent.

2.2. Mandatory Reporting

Reporting is mandatory in all the jurisdictions, but this requirement is often ignored 11 , 12 . In Belgium, nearly half of all cases of euthanasia are not reported to the Federal Control and Evaluation Committee 13 . Legal requirements were more frequently not met in unreported cases than in reported cases: a written request for euthanasia was more often absent (88% vs. 18%), physicians specialized in palliative care were consulted less often (55% vs. 98%), and the drugs were more often administered by a nurse (41% vs. 0%). Most of the unreported cases (92%) involved acts of euthanasia, but were not perceived to be “euthanasia” by the physician. In the Netherlands, at least 20% of cases of euthanasia go unreported 7 . That number is probably conservative because it represents only cases that can be traced; the actual number may be as high as 40% 14 . Although reporting rates have increased from pre-legalization in 2001, 20% represents several hundred people annually.

2.3. Only by Physicians

The involvement of nurses gives cause for concern because all the jurisdictions, with the exception of Switzerland, require that the acts be performed only by physicians. In a recent study in Flanders, 120 nurses reported having cared for a patient who received life-ending drugs without explicit request 15 . Nurses performed the euthanasia in 12% of the cases and in 45% of the cases without explicit consent. In many instances, the physicians were absent. Factors significantly associated with a nurse administering the life-ending drugs included the nurse being a male working in a hospital and the patient being over 80 years of age.

2.4. Second Opinion and Consultation

All jurisdictions except for Switzerland require a consultation by a second physician to ensure that all criteria have been met before proceeding with euthanasia or pas . In Belgium, a third physician has to review the case if the person’s condition is deemed to be non-terminal. The consultant must be independent (not connected with the care of the patient or with the care provider) and must provide an objective assessment. However, there is evidence from Belgium, the Netherlands, and Oregon that this process is not universally applied 10 , 13 . In the Netherlands, for example, a consultation was not sought in 35% of cases of involuntary euthanasia 7 . In 1998 in the Netherlands, 25% of patients requesting euthanasia received psychiatric consultation; in 2010 none did 16 . Moreover, non-reporting seems to be associated with a lack of consultation by a second doctor 14 .

In Oregon, a physician member of a pro-assisted-suicide lobby group provided the consultation in 58 of 61 consecutive cases of patients receiving pas in Oregon 17 . This raises concerns about the objectivity of the process and the safety of the patients, and raises questions about the influence of bias on the part of these physicians on the process.

Networks of physicians trained to provide the consultation role when euthanasia is sought have been established in the Netherlands (Support and Consultation on Euthanasia in the Netherlands) and Belgium [Life End Information Forum ( leif )] 18 . Their role includes ensuring that the person is informed of all options, including palliative care. However, most leif physicians have simply followed a 24-hour theoretical course, of which only 3 hours are related to palliative care, hardly sufficient to enable a leif member to provide adequate advice on complex palliative care needs 19 . The development of expertise in palliative care, as in any other specialty, requires a considerable amount of time. In the United Kingdom, it involves a 4-year residency program, and in Australia and the United States, 3 years.

Oregon requires that a patient be referred to a psychiatrist or psychologist for treatment if the prescribing or consulting physician is concerned that the patient’s judgment is impaired by a mental disorder such as depression. In 2007, none of the people who died by lethal ingestion in Oregon had been evaluated by a psychiatrist or a psychologist 20 , despite considerable evidence that, compared with non-depressed patients, patients who are depressed are more likely to request euthanasia and that treatment for depression will often result in the patient rescinding the request 21 – 23 . In a study of 200 terminally ill cancer patients, for example, the prevalence of depressive syndromes was 59% among patients with a pervasive desire to die, but only 8% among patients without such a desire 21 . Despite that finding, many health professionals and family members of patients in Oregon who pursue pas generally do not believe that depression influences the choice for hastened death 24 .

A recent Oregon-based study demonstrated that some depressed patients are slipping through the cracks 25 . Among terminally ill patients who received a prescription for a lethal drug, 1 in 6 had clinical depression. Of the 18 patients in the study who received a prescription for the lethal drug, 3 had major depression, and all of them went on to die by lethal ingestion, but had been assessed by a mental health specialist.

There is evidence, therefore, that safeguards are ineffective and that many people who should not be euthanized or receive pas are dying by those means. Of concern, too, is the fact that transgressions of the laws are not prosecuted and that the tolerance level for transgressions of the laws has increased. Moreover, as the next section will explore, the boundaries of what constitutes “good” practices with respect to euthanasia and pas continue to change, and some of the current practices would just a few decades ago have been considered unacceptable in those jurisdictions that have legalized the practices.

3. THE “SLIPPERY SLOPE” ARGUMENT

The “slippery slope” argument, a complex legal and philosophical concept, generally asserts that one exception to a law is followed by more exceptions until a point is reached that would initially have been unacceptable. The “slippery slope” argument has, however, several interpretations 26 , some of which are not germane to the euthanasia discussion. The interpretations proposed by Keown in 2002 27 appear very relevant, however. He refers to these collectively as a “practical slippery slope,” although the term “social slippery slope” may be more applicable. The first interpretation postulates that acceptance of one sort of euthanasia will lead to other, even less acceptable, forms of euthanasia. The second contends that euthanasia and pas , which originally would be regulated as a last-resort option in only very select situations, could, over time, become less of a last resort and be sought more quickly, even becoming a first choice in some cases.

The circumvention of safeguards and laws, with little if any prosecution, provides some evidence of the social slippery slope phenomenon described by Keown 5 , 28 . Till now, no cases of euthanasia have been sent to the judicial authorities for further investigation in Belgium. In the Netherlands, 16 cases (0.21% of all notified cases) were sent to the judicial authorities in the first 4 years after the euthanasia law came into effect; few were investigated, and none were prosecuted 5 . In one case, a counsellor who provided advice to a non-terminally ill person on how to commit suicide was acquitted 29 . There has therefore been an increasing tolerance toward transgressions of the law, indicating a change in societal values after legalization of euthanasia and assisted suicide.

In the 1987 preamble to its guidelines for euthanasia, the Royal Dutch Medical Association had written “If there is no request from the patient, then proceeding with the termination of his life is [juristically] a matter of murder or killing, and not of euthanasia.” By 2001, the association was supportive of the new law in which a written wish in an advance directive for euthanasia would be acceptable, and it is tolerant of non-voluntary and involuntary euthanasia 7 , 30 , 31 . However, basing a request on an advance directive or living will may be ethically problematic because the request is not contemporaneous with the act and may not be evidence of the will of the patient at the time euthanasia is carried out.

Initially, in the 1970s and 1980s, euthanasia and pas advocates in the Netherlands made the case that these acts would be limited to a small number of terminally ill patients experiencing intolerable suffering and that the practices would be considered last-resort options only. By 2002, euthanasia laws in neither Belgium nor the Netherlands limited euthanasia to persons with a terminal disease (recognizing that the concept of “terminal” is in itself open to interpretation and errors). The Dutch law requires only that a person be “suffering hopelessly and unbearably.” “Suffering” is defined as both physical and psychological, which includes people with depression. In Belgium, the law ambiguously states that the person “must be in a hopeless medical situation and be constantly suffering physically or psychologically.” By 2006, the Royal Dutch Medical Association had declared that “being over the age of 70 and tired of living” should be an acceptable reason for requesting euthanasia 32 . That change is most concerning in light of evidence of elder abuse in many societies, including Canada 33 , and evidence that a large number of frail elderly people and terminally ill patients already feel a sense of being burden on their families and society, and a sense of isolation. The concern that these people may feel obliged to access euthanasia or pas if it were to become available is therefore not unreasonable, although evidence to verify that concern is not currently available.

In Oregon, although a terminal illness with a prognosis of less than 6 months to live has to be present, intolerable suffering that cannot be relieved is not a basic requirement (again recognizing that the concept of “intolerable suffering” is in itself ambiguous). This definition enables physicians to assist in suicide without inquiring into the source of the medical, psychological, social, and existential concerns that usually underlie requests for assisted suicide. Physicians are required to indicate that palliative care is a feasible alternative, but are not required to be knowledgeable about how to relieve physical or emotional suffering.

Until 2001, the Netherlands allowed only adults access to euthanasia or pas . However, the 2001 law allowed for children aged 12–16 years to be euthanized if consent is provided by their parents, even though this age group is generally not considered capable of making such decisions 5 . The law even allows physicians to proceed with euthanasia if there is disagreement between the parents. By 2005, the Groningen Protocol, which allows euthanasia of newborns and younger children who are expected to have “no hope of a good quality of life,” was implemented 34 , 35 . In 2006, legislators in Belgium announced their intention to change the euthanasia law to include infants, teenagers, and people with dementia or Alzheimer disease 36 .

In Belgium, some critical care specialists have opted to ignore the requirement that, in the case of non-terminally-ill patients, an interval of 1 month is required from the time of a first request until the time that euthanasia is performed. One specialist reported that, in his unit, the average time from admission until euthanasia was performed for patients that seemed to be in a “hopeless” situation was about 3.5 days 37 . Beneficence, this specialist argued, was the overriding principle.

Initially, euthanasia in the Netherlands was to be a last-resort option in the absence of other treatment options. Surprisingly, however, palliative care consultations are not mandatory in the jurisdictions that allow euthanasia or assisted suicide, even though uncontrolled pain and symptoms remain among the reasons for requesting euthanasia or pas 38 . Requests by the Belgian palliative care community to include an obligatory palliative care consultation (“palliative filter”) were denied 19 . From 2002 to 2007 in Belgium, a palliative care physician was consulted (second opinion) in only 12% of all cases of euthanasia 31 . Palliative care physicians and teams were not involved in the care of more than 65% of cases receiving euthanasia. Moreover, the rates of palliative care involvement have been decreasing. In 2002, palliative care teams were consulted in 19% of euthanasia cases, but by 2007 such involvement had declined to 9% of cases. That finding contradicts claims that in Belgium, legalization has been accompanied by significant improvements in palliative care in the country 39 . Other studies have reported even lower palliative care involvement 8 , 13 . It must be noted that legalization of euthanasia or pas has not been required in other countries such as the United Kingdom, Australia, Ireland, France, and Spain, in which palliative care has developed more than it has in Belgium and the Netherlands.

The usefulness of a single palliative care assessment has been challenged—even when it is an obligatory requirement, as is the case at the University Hospital of the Canton of Vaud, Lausanne, Switzerland (the first hospital to allow, in 2005, assisted suicide in Switzerland 40 ) 41 . Among U.K. palliative care physicians, 63% feel that a single assessment is insufficient to fully evaluate and address the needs of a person requesting euthanasia or pas 42 . A similar number of U.K. psychiatrists have expressed similar concerns 43 , 44 , and only 6% of Oregon psychiatrists are comfortable providing consultations for patients requesting pas 45 .

Originally, it was the view of the Supreme Court of the Netherlands, the Royal Dutch Medical Association, and the ministers of Justice and Health that euthanasia would not be an option in situations in which alternative treatments were available but the patient had refused them. When this view conflicted with the accepted ethical principle that patients are allowed to refuse a treatment option, the law was altered to allow access to euthanasia even if the person refused another available option such as palliative or psychiatric care. One consequence of the change is that, the appropriateness of suicide prevention programs may begin to be questioned, because people wanting to commit suicide should, on the basis of autonomy and choice, have the same rights as those requesting euthanasia.

There are other examples that a “social slippery slope” phenomenon does indeed exist. In Switzerland in 2006, the university hospital in Geneva reduced its already limited palliative care staff (to 1.5 from 2 full-time physicians) after a hospital decision to allow assisted suicide; the community-based palliative care service was also closed (JP. Unpublished data). Of physicians in the Netherlands, 15% have expressed concern that economic pressures may prompt them to consider euthanasia for some of their patients; a case has already been cited of a dying patient who was euthanized to free a hospital bed 46 . There is evidence that attracting doctors to train in and provide palliative care was made more difficult because of access to euthanasia and pas , perceived by some to present easier solutions, because providing palliative care requires competencies and emotional and time commitments on the part of the clinician 47 , 48 . At the United Kingdom’s parliamentary hearings on euthanasia a few years ago, one Dutch physician asserted that “We don’t need palliative medicine, we practice euthanasia” 49 . Compared with euthanasia cases, cases without an explicit request were more likely to have a shorter length of treatment of the terminal illness 10 .

Advocates of euthanasia have largely ignored these concerns about the “social slippery slope” and have opted to refute the “slippery slope” argument on the basis that legalizing euthanasia and pas has not led to exponential increases in cases of euthanasia or pas or in a disproportionate number of vulnerable persons being euthanized 7 , 26 , 30 . However, there is evidence that challenges those assertion.

The number of deaths by euthanasia in Flanders has doubled since 1998 30 . Of the total deaths in this Flemish-speaking part of Belgium (population 6 million), 1.1%, 0.3%, and 1.9% occurred by euthanasia in 1998, 2001, and 2007 respectively 30 (about 620, 500, and 1040 people respectively in those years). The requirement of the law to report euthanasia cases (aided by laxity in prosecuting cases that fall outside the requirement) may explain some, but not all, of the increase 31 . Chambaere et al. 10 reported in the Canadian Medical Association Journal that in Belgium, euthanasia without consent had decreased from 3.2% in 1998 to 1.8% in 2007. But a closer review of the original study shows that the rate had declined to 1.5% in 2001 and then increased again to 1.8% in 2007 30 .

In Holland, the overall rate of euthanasia was 1.7% of all deaths in 2005, down from 2.4% and 2.6% in 2001 and 1995 respectively, but no different from 1990 when the rate was 1.7% 7 . However, the Dutch government’s official statistics indicate a rise of 13% in 2009 compared with 2008; euthanasia now accounts for 2% of all deaths. Given the increasing numbers, interest in developing facilities that provide euthanasia (similar to those of the Swiss pro–assisted suicide group Dignitas) has recently been increasing. In Oregon, although the number of cases of pas remain very small relative to the population, the rate has been increasing: 24 prescriptions were written in 1998 (16 of which led to deaths by pas ), 67 prescriptions in 2003 (43 of which led to deaths by pas ), and 89 in 2007 50 .

In Belgium, the rates of involuntary and non-voluntary euthanasia have decreased; together they accounted for 3.2%, 1.5%, and 1.8% of all deaths in 1998, 2001, and 2007 respectively (1800, 840, and, 990 people respectively in those years) 30 . In the Netherlands, the rate decreased from 0.7% in 2001 to 0.4% in 2005 7 . The actual rate is probably higher, given the large number of unreported cases. Notwithstanding the decrease, the rates are perturbing.

Battin et al. 51 examined data from Oregon and the Netherlands and concluded, as have others 30 , that there was no evidence that vulnerable people, except for people with aids , are euthanized disproportionately more. “Vulnerable” was defined in that study as individuals who are elderly, female, uninsured, of low educational status, poor, physically disabled or chronically ill, younger than the age of majority, affected with psychiatric illnesses including depression, or of a racial or ethnic minority. Finlay and George challenged the study on the basis that vulnerability to pas or euthanasia cannot be categorized simply by reference to race, sex, or other socioeconomic status. Other characteristics, such as emotional state, reaction to loss, personality type, and the sense of being a burden are also important 52 . Patients are also vulnerable to the level of training and experience that their physicians have in palliative care and to the personal views of their physicians about the topic. For example, one study showed that the more physicians know about palliative care, the less they favour euthanasia and pas 53 .

Two recent studies further contradict the findings by Battin and colleagues. Chambaere et al. found that voluntary and involuntary euthanasia occurred predominantly among patients 80 years of age or older who were in a coma or who had dementia 10 . According to them, these patients “fit the description of vulnerable patient groups at risk of life-ending without request.” They concluded that “attention should therefore be paid to protecting these patient groups from such practices.” In another study, two of the factors significantly associated with a nurse administering life-ending drugs were the absence of an explicit request from the patient and the patient being 80 years of age or older 15 .

4. THE RESPONSE

What can be done, then, when the best of palliative care is unable to address suffering?

Zylicz, a palliative care specialist who has worked extensively in the Netherlands with people requesting euthanasia and pas , provides a taxonomy to understand the reasons underlying the requests and provides stepping stones for addressing the requests. The requests can be classified into five categories (summarized by the abbreviation abcde ) 54 :

• Being afraid of what the future may hold
• Experiencing burnout from unrelenting disease
• Having the wish and need for control
• Experiencing depression
• Experiencing extremes of suffering, including refractory pain and other symptoms

Strategies are available to begin to address severe refractory symptoms, to treat depression, and to deal with the fear that some people have of what the future with a terminal disease may hold. Approximately 10%–15% of pain and other physical symptoms (such as dyspnea and agitated delirium) cannot be controlled with first- and second-line approaches and become refractory. For these symptoms, there is the option of palliative sedation. Palliative sedation is defined as “the monitored use of medications intended to induce a state of decreased or absent awareness (unconsciousness) in order to relieve the burden of otherwise intractable suffering in a manner that is ethically acceptable to the patient, family and health-care providers in patients that are imminently dying” 55 . Its intent is not to hasten death, which differentiates it from euthanasia. The goal is to achieve comfort at the lowest dose of sedative possible (usually with midazolam infusion, not with opioids) and at the lightest level of sedation. Some patients therefore achieve comfort at light levels of sedation, allowing them to continue interacting with family; in others, comfort is achieved only at deep levels of sedation.

Studies have shown that losing a sense of dignity and hope and taking on a sense of burden prompt some people to seek euthanasia and pas 21 – 23 , 56 . Strategies to improve the sense of dignity, based on empirical studies that have explored the concept of dignity within palliative care, have been shown to work 57 . Similar strategies need to be developed in the areas of hope and burden.

Given effective palliation, including palliative sedation for patients with refractory symptoms, the only remaining issue is that of legalizing “on-demand” euthanasia and pas when there is no terminal disease or when the person is tired of living or has a mental illness. Legalizing euthanasia and assisted suicide in these circumstances is most concerning and would have major implications over time, including changing a society’s values and making suicide prevention programs redundant because people wishing to commit suicide would then be entitled to do so.

In 30 years, the Netherlands has moved from euthanasia of people who are terminally ill, to euthanasia of those who are chronically ill; from euthanasia for physical illness, to euthanasia for mental illness; from euthanasia for mental illness, to euthanasia for psychological distress or mental suffering—and now to euthanasia simply if a person is over the age of 70 and “tired of living.” Dutch euthanasia protocols have also moved from conscious patients providing explicit consent, to unconscious patients unable to provide consent. Denying euthanasia or pas in the Netherlands is now considered a form of discrimination against people with chronic illness, whether the illness be physical or psychological, because those people will be forced to “suffer” longer than those who are terminally ill. Non-voluntary euthanasia is now being justified by appealing to the social duty of citizens and the ethical pillar of beneficence. In the Netherlands, euthanasia has moved from being a measure of last resort to being one of early intervention. Belgium has followed suit 37 , and troubling evidence is emerging from Oregon specifically with respect to the protection of people with depression and the objectivity of the process.

The United Nations has found that the euthanasia law in the Netherlands is in violation of its Universal Declaration of Human Rights because of the risk it poses to the rights of safety and integrity for every person’s life. The UN has also expressed concern that the system may fail to detect and to prevent situations in which people could be subjected to undue pressure to access or to provide euthanasia and could circumvent the safeguards that are in place.

Autonomy and choice are important values in any society, but they are not without limits. Our democratic societies have many laws that limit individual autonomy and choice so as to protect the larger community. These include, among many others, limits on excessive driving speeds and the obligation to contribute by way of personal and corporate income taxes. Why then should different standards on autonomy and choice apply in the case of euthanasia and pas ?

Legislators in several countries and jurisdictions have, in just the last year, voted against legalizing euthanasia and pas in part because of the concerns and evidence described in this paper. Those jurisdictions include France, Scotland, England, South Australia, and New Hampshire. They have opted to improve palliative care services and to educate health professionals and the public.

6. CONFLICT OF INTEREST DISCLOSURES

The author has no financial conflict of interest to declare.

7. REFERENCES