After the development of ether, physicians began advocating the use of anesthetics to relieve the pain of death. In 1870, Samuel Williams first proposed using anesthetics and morphine to intentionally end a patient's life.
Over the next 35 years, debates about euthanasia raged in the United States which resulted in an Ohio bill to legalize euthanasia in 1906, a bill that was ultimately defeated. Euthanasia advocacy in the U.S. peaked again during the 1930s and diminished significantly during and after World War II.
Euthanasia efforts were revived during the 1960s and 1970s, under the right-to-die rubric, physician assisted death in liberal bioethics, and through advance directives and do not resuscitate orders. Several major court cases advanced the legal rights of patients, or their guardians, to withdraw medical support with the expected outcome of death.
By 1990, barely a decade and a half after the New Jersey Supreme Court’s historic decision, patients were well aware that they could decline any form of medical therapy if they simply choose to do that either directly or by expressing their wish via appointed representative. In a 2004 article in the Bulletin of the History of Medicine, Brown University historian Jacob M. Appeal documented extensive political debate over legislation to legalize physician-assisted suicide in both Iowa and Ohio in 1906.
The driving force behind this movement was social activist Anna S. Hall. Canadian historian Ian Dowbiggen's 2003 book, A Merciful End, revealed the role that leading public figures, including Clarence Darrow and Jack London, played in advocating for the legalization of euthanasia.
In the 1983 case of Barber v. Superior Court, two physicians had honored a family's request to withdraw both respirator and intravenous feeding and hydration tubes from a comatose patient. The physicians were charged with murder, despite the fact that they were doing what the family wanted.
In June 2019, the Maine Legislature by a very close vote passed a bill to legalize assisted dying. The Governor of Maine signed the bill into law within the same month.
In the United States legal and ethical debates about euthanasia became more prominent in the Karen Ann Quinn case who went into a comma after allegedly mixing tranquilizers with alcohol, surviving biologically for 9 years in a persistent vegetative state even after the New Jersey Supreme Court approval to remove her from a respirator. In 1999, the state of Texas passed the Advance Directives Act.
Under the law, in some situations, Texas hospitals and physicians have the right to withdraw life support measures, such as mechanical respiration, from terminally ill patients when such treatment is considered to be both futile and inappropriate. In 2005, a six-month-old infant, Sun Hudson, with a uniformly fatal disease thanatophoric dysplasia, was the first patient in which “a United States court has allowed life-sustaining treatment to be withdrawn from a pediatric patient over the objections of the child's parent”.
201D §12 Massachusetts states that “Nothing in this chapter shall be construed to constitute, condone, authorize, or approve suicide or mercy killing or to permit any affirmative or deliberate act to end one's own life other than to permit the natural process of dying”. Even though euthanasia as well as physician assisted suicide is not legal in Massachusetts, the Supreme court ruled in 1997 to not allow euthanasia or physician assisted suicide, but to give the freedom to the patient to refuse life supporting medical care by making these two laws different from one another.
So now although there is no euthanasia in Massachusetts, one is allowed to refuse artificial life support measures. Attempts to legalize euthanasia and assisted suicide resulted in ballot initiatives and legislation bills within the United States in the last 20 years.
Reflecting the religious and cultural diversity of the United States, there is a wide range of public opinion about euthanasia and the right-to-die movement in the United States. During the past 30 years, public research shows that views on euthanasia tend to correlate with religious affiliation and culture, though not gender.
In one recent study dealing primarily with Christian denominations such as Southern Baptists, Pentecostals, and Evangelicals and Catholics tended to be opposed to euthanasia. Moderate Protestants, (e.g., Lutherans and Methodists) showed mixed views concerning end of life decisions in general.
Both of these groups showed less support than non-affiliates, but were less opposed to it than conservative Protestants. Respondents that did not affiliate with a religion were found to support euthanasia more than those who did.
The liberal Protestants (including some Presbyterians and Episcopalians) were the most supportive. In general, liberal Protestants affiliate more loosely with religious institutions and their views were not similar to those of non-affiliates.
Within all groups, religiosity (i.e., self-evaluation and frequency of church attendance) also correlated to opinions on euthanasia. Individuals who attended church regularly and more frequently and considered themselves more religious were found to be more opposed to euthanasia than to those who had a lower level of religiosity.
Some speculate that this discrepancy is due to the lower levels of trust in the medical establishment. Select researchers believe that historical medical abuses towards minorities (such as the Tuskegee Syphilis Study) have made minority groups less trustful of the level of care they receive.
Among African Americans, education correlates to support for euthanasia. Black Americans without a four-year degree are twice as likely to oppose euthanasia than those with at least that much education.
Level of education, however, does not significantly influence other racial groups in the US. Some researchers suggest that African Americans tend to be more religious, a claim that is difficult to substantiate and define.
Only black and white Americans have been studied in extensive detail. Although it has been found that minority groups are less supportive of euthanasia than white Americans, there is still some ambiguity as to what degree this is true.
A 2005 Gallup Poll found that 84% of males supported euthanasia compared to 64% of females. Some cite the prior studies showing that women have a higher level of religiosity and moral conservatism as an explanation for major opposition to euthanasia.
Within both sexes, there are differences in attitudes towards euthanasia due to other influences. Wolf highlights four possible gender effects: higher incidence of women than men dying by physician-assisted suicide; more women seeking physician-assisted suicide or euthanasia for different reasons than men; physicians granting or refusing requests for assisted suicide or euthanasia because of the gender of the patient; gender affecting the broad public debate by envisioning a woman patient when considering the debate.
“The History of Euthanasia Debates in the United States and Britain”. ^ Burette, Amy M; Hill, Terrence D; Moulton, Benjamin E. Religion and Attitudes toward Physician-Assisted Suicide and Terminal Palliative Care” Journal for the Scientific Study of Religion 2005, 44, 1, Mar, 79–93.
“The history of euthanasia debates in the United States and Britain” in Death and Dying: A Reader, edited by T. A. Shannon. Some non-religious views against proposed 'mercy-killing' legislation in Death, Dying, and Euthanasia, edited by D. J. Horn and D. Mall.
Mansion, Roger S. “The sanctity of life and the right to die: social and jurisprudential aspects of the euthanasia debate in Australia and the United States” in Pacific Rim Law & Policy Journal (6:1), January 1997. “Physician-assisted suicide and euthanasia in the United States” in Journal of Legal Medicine (16:481–507), December 1995.
Affiliation: Department of Psychiatry, Harvard Medical School and Brigham and Women's Hospital, 75 Francis Street, Boston, Massachusetts02115, USA Affiliation: Center for Clinical Bioethics, Georgetown University, Bldg.
Affiliation: Department of Bioethics, National Institutes of Health, 10 Center Drive, Room 1C118, Bethesda, Maryland20892, USA Background Euthanasia or assisted suicide (EAS) for psychiatric disorders, legal in some countries, remains controversial.
They often cause a sense of irremediable suffering and engender complex patient–clinician interactions, both of which could complicate EAS evaluations. Methods conducted a directed-content analysis of all psychiatric EAS cases involving personality and related disorders published by the Dutch regional euthanasia review committees (N = 74, from 2011 to October 2017).
Physicians evaluating such patients appear to be especially emotionally affected compared with when personality disorders are not present. These factors could influence the interpretation of EAS requirements of irremediably, raising issues that merit further discussion and research.
Euthanasia or assisted suicide (EAS) for psychiatric disorders, legal in some European countries such as Belgium and the Netherlands, remains controversial (see Box 1). Personality disorders are present in at least half of those who request and receive psychiatric EAS (Tinpot et al., Reference Tinpot, Verhofstadt, Van Loon, Distelmans, Adenauer and De Deyn2015 ; Kim et al., Reference Kim, De Tries and Peteet2016).
Given their chronic, prevalence, significant symptom burden, and impact on outcomes of co-morbid Axis I psychiatric disorders (Tyler et al., Reference Tyler, Reed and Crawford2015), it is perhaps not surprising that these disorders are so common in patients requesting EAS. In particular, the characteristic features of personality disorders, such as feelings of helplessness, hopelessness, and suicidal thoughts (which are usually addressed therapeutically) may be difficult to distinguish from feelings of intolerable and hopeless suffering (which are eligibility criteria for EAS) (Swildens-Rozendaal and van Welsh, Reference Swildens-Rozendaal and van Wersch2015).
Thus, it may be challenging to evaluate whether there really is no prospect of improvement and no alternative to EAS in such cases. Furthermore, because personality disorders are known to evoke complex interpersonal interactions, including with health care providers (Bergman et al., Reference Bergman, Heisman, Legate, Nolan, Polar, Sc herders and Tholen2009), managing such dynamics in the EAS evaluation process may require special care and expertise.
The Termination of Life on Request and Assisted Suicide Act was enacted in 2002, formalizing what had been legally protected practice based on court decisions (Griffith et al., Reference Griffith, Waters and Adams2008). They are committed to transparency and publish on their website a selection of case reports that are deemed ‘important for the development of standards’ to provide ‘transparency and auditability’ of EAS practice (RTE, 2014 ; Swildens-Rozendaal and van Welsh, Reference Swildens-Rozendaal and van Wersch2015).
The RTE has since reduced the number of published psychiatric EAS cases. The debate regarding psychiatric EAS has mainly focused on treatment-resistant depression as the paradigm case (Schuyler and van de Athirst, Reference Schuyler and van de Vathorst2015 ; Blikshavn et al., Reference Blikshavn, Hus um and Magelssen2017 ; Steinbeck, Reference Steinbock2017), and personality disorders have received little attention so far despite their prevalence and their unique challenges in the context of psychiatric EAS.
This study aimed to describe the characteristics of patients with personality disorders who receive EAS and how their requests for EAS are evaluated, given the potential challenges in evaluating these patients’ beliefs about irremediably of their condition. One hundred and sixteen of these 232 cases (50%) were published and available on the RTE website during the period between 1 June 2015 and 1 October 2017.
Because the RTE reports are not always written with precise clinical language and because persons can have clinically significant symptoms of a personality disorder without fully meeting diagnostic criteria (Old ham, Reference Oldham2006 ; Zimmerman et al., Reference Zimmerman, Helsinki, Young, Dalrymple and Martinez2012), we included two more categories of patients. Category 2 included the cases without a formal diagnosis but with explicit mention of prominent personality difficulties or ‘traits’ (n = 16; 22%).
Because of the clinically significant overlap between (cluster B) personality disorders and interpersonal hardship following trauma as seen in some disorders, e.g. complex post-traumatic stress disorder (PTSD) (Guru et al., Reference Guru, Skokie, Andrew, Alexopoulou, Gourds and Jelastopulu2018), a third category included cases with explicit mention of early traumatic events and chronic residual symptoms of interpersonal dysfunction (n = 10; 13%), defined by the presence of chronic/complex PTSD (n = 6), self-harming behavior (n = 8), psychotic or dissociative symptoms (n = 4), or a combination of those. For the second author (J.P.), of the 74 cases, 40 cases had been translated into English and have been analyzed for a different set of variables, as described previously (Kim et al., Reference Kim, De Tries and Peteet2016).
All but two patients had comorbid Axis I psychiatric conditions (97%, 72 cases) (Table 2). The three most common conditions were depression (unipolar or bipolar) in 70% (n = 52), PTSD or prominent post-traumatic symptoms in 31% (n = 23) and anxiety disorders in 31%.
These conditions included musculoskeletal and hematologic disorders in 23 cases (including osteoarthritis, osteoporosis, polyarthritis, bone fractures), chronic or generalized pain disorders (chronic fatigue, fibromyalgia, chronic pain) in eight cases, neurological disorders (migraine, anemia, stroke and sequels, ataxia, head trauma, neurogenic bladder, and quadriplegia) in 14 cases, cardiovascular disease (heart failure, cardiac surgery, and myocardial infarct) in three cases, and pulmonary disease (mostly COPD) in five cases. Seventy-three percent (n = 54) of patients had a psychiatric admission in the past, and in 14% (n = 10) some form of compulsory or other court-ordered treatment was mentioned (Table 3).
About a third (34%, n = 25) of patients received electroconvulsive therapy (ECT) at some point; treatment with all indicated medication types for depression including a monoamine oxidase inhibitor (MAO-I) was mentioned in 7% (n = 5). In a fourth (26%) of the cases (n = 19), physicians appeared to consider a treatment option and then determined that it need not be tried.
The most common reasons given were that the physician thought the patient may not benefit from it (n = 13) or was not motivated enough (n = 6). In 29 (39%) cases, the treating GP refused to endorse the EAS request.
The GP's mostly explained complexity either as the combination of physical and psychiatric conditions or in reference to the patient's personality . In 11 cases (15%), both the patient's treating psychiatrist and the GP refused the request.
In over a third (36%, 27 of 74) of cases, there was no mention of current treating psychiatrist involvement at the time of the EAS request (Table 4). Although the Dutch law does not require that the EAS consultant be a psychiatrist even in psychiatric EAS cases, the RTE's Code of Practice of 2015 requires consulting an independent psychiatrist (Swildens-Rozendaal and van Welsh, Reference Swildens-Rozendaal and van Wersch2015).
Although not statistically significant, a current treating psychiatrist was less often involved . Patients with physical comorbidity were more likely to have had a prior EAS request refused by their psychiatrist, referred to the End-of-Life Clinic, and less likely to have tried psychotherapy (Table 5).
Comparison of psychiatric EAS evaluation of patients with and without physical comorbidity According to the RTE (following the Dutch Psychiatric Association Guidelines), the unbearableness of suffering, while defined subjectively by the patient's perspective, ‘must be palpable (‘invoelbaar’) to the physician’ (Swildens-Rozendaal and van Welsh, Reference Swildens-Rozendaal and van Wersch2015).
Despite having received little attention so far, persons with personality disorders constitute more than half of those who request and receive psychiatric EAS (Tinpot et al., Reference Tinpot, Verhofstadt, Van Loon, Distelmans, Adenauer and De Deyn2015 ; Kim et al., Reference Kim, De Tries and Peteet2016). Addressing such EAS requests from persons with personality disorders could be particularly challenging as these patients may have self-destructive behavior, a traumatic background, feelings of helplessness, hopelessness, and despair (Verhofstadt et al., Reference Verhofstadt, Tinpot and Peters2017) which may create challenges in EAS evaluation of irremediably.
Furthermore, personality difficulties can influence interpersonal dynamics that could affect the EAS evaluation process. Most patients had a long history of a complex set of comorbid conditions.
In contrast to a Belgian report of 100 requestors of psychiatric EAS who were younger with few medical co-morbidities (Tinpot et al., Reference Tinpot, Verhofstadt, Van Loon, Distelmans, Adenauer and De Deyn2015), we found that 51% were over 60 years old, nearly two-thirds had comorbid physical disorders, and 61% were functionally dependent to some degree. In only two patients were personality difficulties the sole psychiatric basis for EAS (both had comorbid chronic pain).
Many treating physicians were aware of these issues as indicated by frequent references to ‘complexity’ of cases when explaining their refusal of EAS requests. Women, who are more likely to attempt suicide (Vernal et al., Reference Vernal, Hard, Bernard, Brought, DE RAAF, Buffers, Levine, DE Geronimo, Vila gut, Banquet, Torres, Covers, Harder, Nobleman, Kessler and Alonso2007 ; O’Connor et al., Reference O'Connor, Waterfall, Claire, Scale, Drummond, Ferguson, O'Connor and O'Carroll2018), were disproportionately represented (76%).
There was evidence of demoralization and difficulties relating to others: ‘She suffered from the meaninglessness of her existence (…) Because she was not able to connect with others, she experienced deep despair and loneliness’ (2015–32: 50–60 years, personality disorder NOS and chronic pain) and ‘(t)he patient's suffering consisted of continuous negative thoughts and negative judgments about herself’ (2014–78: 30–40 years, PTSD, borderline personality disorder, multiple suicide attempts). Irremediably is a key due care requirement; patients need not go through ‘every conceivable form of treatment’ but they do not meet the requirement if they refuse ‘a reasonable alternative’ (Swildens-Rozendaal and van Welsh, Reference Swildens-Rozendaal and van Wersch2015).
Not all patients appeared to receive some standard treatments, such as ECT and MAO-inhibitors for mood disorders. In fact, treatment guidelines of both the American Psychiatric Association and the Netherlands Institute of Mental Health and Addiction (Tribes Institute) advise DEBT, MBT, or SFT for the treatment of persons with borderline personality disorders (Tribes Institute, 2008 ; Old ham et al., Reference Old ham, Gab bard, Going, Gunderson, Sol off, Spiegel, Stone and Phillips2010), and applying evidence-based treatments for personality disorders is cost-effective (Melding et al., Reference Melding, McCarthy, Burke and Grenyer2017).
This would be consistent with a trend that Dutch psychiatrists note as an evolution toward accepting patients’ subjective definition of irremediably (den Hereof, Reference den Hartogh2017 ; Onwuteaka-Philipsen et al., Reference Onwuteaka-Philipsen, Legate, van der Had, van Deaden, Evenly, El Hammond, Tasman, Poem, Prone, van de Athirst and Willems2017). This might be influenced by clinicians’ general tendency to consider personality disorders as coincidental rather than as a true diagnosis (Tyler et al., Reference Tyler, Reed and Crawford2015 ; Van and Pool, Reference Van and Kool2018).
When other psychiatrists were involved, this tended to be for cross-sectional evaluation of EAS eligibility, not treatment. Although counter-transference has long been recognized as a challenge in EAS evaluations involving personality disorders (Rosewood et al., Reference Rosewood, Van Her Had, Thole, Strudel, Hungered, Onwuteaka-Philipsen, Van Her Mass and Van Her Wal2004 ; Bergman et al., Reference Bergman, Heisman, Legate, Nolan, Polar, Sc herders and Tholen2009), the term is not mentioned in any of our case reports.
Yet vigilance regarding counter-transference seems especially important given that the RTE directs physicians to use their own reactions to patients’ suffering in EAS evaluations. Thus, physicians seem uniquely emotionally affected by the suffering of patients with personality disorders seeking EAS.
This raises whether the RTE's guidance may lead physicians to operate within a patient's psychopathology. For example, a clinician may identify with a patient's perception of irremediably (e.g. ‘nothing will work’): ‘Other therapeutic avenues were explored including Mentalization Based Therapy (MBT).
The physician agreed with her as her personality structure was deemed not strong enough to endure such a drastic treatment (MBT) without her suicidal tendencies or depression getting out of control’ (2014-78). However, as mentioned earlier, this evidence-based treatment is especially beneficial for high clinical severity patients (Karsten et al., Reference Karsten, Pedersen, Folio, Urges, Johansen, Hummelen, Wilbert and Karterud2019), with positive effects on suicidality and depressive symptoms (Batsman and Foreign, Reference Batsman and Fonagy2009).
The results of our study raise questions about how to interpret the irremediably requirement in patients with personality disorders. There is substantial evidence for the effectiveness of several psychotherapeutic treatment options on outcome measures such as depressive symptoms or suicidal behavior (Batsman and Foreign, Reference Batsman and Fonagy2009 ; McCain et al., Reference McCain, Links, Guam, Guion, Caddish, Korean and Streiner2009 ; Crises et al., Reference Crises, Gentile, Comet, Paloma, Bamboo and Cuijpers2017).
Similarly, the complex interplay between psychiatric and somatic comorbidity, in particular in female patients, needs further study (WHO, 2001). The results of this study may support recent proposals to improve psychiatric EAS evaluation that include a longer-term evaluation, more than one independent expert input, and a parallel therapeutic focus on recovery while the EAS request is evaluated (Vandenberghe et al., Reference Vandenberghe, IECA, Matches, Van den Brock, Become, Class, De Fruit, Herman's, Clemens, Peters and Van Buggenhout2017 ; Eastman, Reference Gastmans2018).
While the Dutch euthanasia law allows for physicians’ discretion, the results raise whether sufficient safeguards are in place, including the necessary expertise in personality disorders. Involvement of experts may be limited by the reluctance of psychiatrists to be involved in EAS (Onwuteaka-Philipsen et al., Reference Onwuteaka-Philipsen, Legate, van der Had, van Deaden, Evenly, El Hammond, Tasman, Poem, Prone, van de Athirst and Willems2017) and the physician-centric nature of EAS evaluations (with no official role for other mental health professionals, such as psychologists and other therapists, who may have more expertise in the long-term management of personality issues).
The need for more expertise in personality disorders may also apply to the Rates given its difficulties in finding mental health professionals to serve on the RTE (Kornberg et al., Reference Kornberg, Peter and Kim2016 ; Kurdistan and van der Award, Reference Kurdistan and van der Zwaard2018). Finally, these results, which are based on retrospective reviews, suggest a need to prospectively investigate psychiatric EAS in persons with personality disorders, focusing on the patients’ perceptions underlying their requests for EAS and on their clinicians’ decision-making when evaluating those requests, with special attention to how the granted EAS requests differ from those that are denied.
However, the Rates intend the published cases to serve educational, precedent setting functions so that they do carry a special significance (RTE, 2014). Moreover, given that the reports are not always written in clinical language, there was often a lack of specificity regarding the type of personality disorder and their diagnostic descriptions.
However, this report comprises all available case descriptions of an infrequent but growing phenomenon which allowed for patient-level analysis. Finally, because this article focuses mainly on the irremediably requirement, we did not address the issue of mental capacity in personality disorders, a complex issue (Owen et al., Reference Owen, Richardson, David, Smaller, Hayward and Hotopf2008 ; Are et al., Reference Are, Owen and Moran2017) which requires a separate discussion.
For most patients, their personality difficulties were part of complex clinical histories with multiple psychiatric and physical comorbidities. These patients generally had long histories of suffering, with features common to suicidal persons with personality disorders, including histories of serious self-harm, suicide attempts, and demoralization.
The issues raised are worthy of further investigation and discussion, especially as some jurisdictions consider legalization of psychiatric EAS. Thanks the Pelegrín Center for Clinical Bioethics and Kennedy Institute of Ethics, Georgetown University, where she was a Visiting Scholar during which part of this research was carried out.
(University of Rochester), for their comments provided on an earlier draft of this manuscript. Drafting the work or revising it critically for important intellectual content: all authors.
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