Introduction
Internationally, the debate concerning medically assisted dying, whether euthanasia or physician-assisted suicide (E/PAS), has focused attention on the complex issues faced in the medical care of the seriously ill and dying. Intrinsic to this debate is the place of assisted suicide in medical practice, the role of the doctor, and the professional, ethical, and clinical dimensions of the doctor-patient relationship. However, research among doctors to date regarding their perspectives on assisted suicide have chiefly focused on general attitudes towards assisted suicide (Van der Heide et al., Reference Van der Heide, Onwuteaka-Philipsen, Rurup, Buiting, van Delden, Hanssen-de Wolf, Janssen, Pasman, Rietjens, Prins, Deerenberg, Gevers, van der Maas and van der Wal2007). When actual clinical practices are surveyed, studies have been chiefly large-scale studies of prevalence of self-reported interventions and intentions to hasten death.
Why might clinician perspectives matter? Firstly, considerable debate focuses on the role of E/PAS as a “medical treatment,” constructing choosing to die as a medical decision (Chochinov, Reference Chochinov2016). Secondly, previous research has identified the potential link between clinician attributes and the wish to hasten death among terminally ill cancer patients (Kelly et al., Reference Kelly, Burnett, Pelusi, Badger, Varghese and Robertson2004). It is established that factors such as “non-conscious bias” can influence a clinician's assessment and choice of treatment offered to patients (Stone & Moscowitz, Reference Stone and Moskowitz2011). This can manifest in potential “collusion” between patients and clinicians that may lead to a failure to explore potential concerns, carefully assess decision-making capacity (Kissane, Reference Kissane2004), or challenge the patient's perspective, such as feelings of futility of living in the face of incurable disease (Robinson et al., Reference Robinson, Kissane, Brooker and Burney2015; Robinson et al., Reference Robinson, Kissane, Brooker and Burney2016), or the perceived indignity of loss of independence that accompanies severe illness (De Vries et al., Reference De Vries, Gholamrezaee, Verdonck-de Leeuw, de Roten, Despland, Stiefel and Passchier2018). Research has also highlighted the complexity for clinicians of meaning and intention attached to clinical decisions made in the care of dying patients: the misperceptions regarding the consequences of actions such as potential beneficial or hazardous effects of treatments such as analgesia (e.g., the complexity of “double effect”; White et al., Reference White, Willmott and Ashby2011); and the different meanings and impacts for clinicians between withholding or withdrawing treatment (Chung et al., Reference Chung, Yoon, Rasinski and Curlin2016).
Furthermore, the psychological impact on clinicians of adverse patient outcomes in many fields of clinical practice is well established (Guest et al., Reference Guest, Baser, Li, Brown, Scardino and Kissane2011a; Guest et al., Reference Guest, Baser, Li, Brown, Scardino and Kissane2011b). This includes the impact of the death of a patient on the clinician, even when this occurs as a direct consequence of natural cancer progression (Granek et al., Reference Granek, Bartels, Scheinmann, Labrecque and Barrera2015). Clinical observations suggest that these reactions are likely to be more intense when involving a degree of real or perceived personal responsibility for poor outcomes or death of a patient (Tan & Gallagher, Reference Tan, Gallagher, Kissane, Bultz, Butow, Bylund, Noble and Wilkinson2017). Finally, the death of a patient through suicide is known to have a profound effect on treating clinicians (Draper et al., Reference Draper, Kõlves, De Leo and Snowdon2014).
These lines of evidence demonstrate a range of challenges faced by doctors in the care of dying patients. These complexities may be accentuated in the care of the dying patient requesting assisted suicide (Muskin, Reference Muskin1998; Hudson et al., Reference Hudson, Hudson, Philip, Boughey, Kelly and Hertogh2015) and may lead to a degree of “moral distress,” compounded by the often diverse and divided opinions regarding such complex treatment decisions and their consequences. This has direct implications for the practice of assisted suicide in which clinicians will have a direct or indirect role in the deliberate hastening of the death of a patient. Furthermore, research from other fields (e.g., veterinary practice) suggest that such actions leading to death, or actions that may be experienced as “killing,” can have long-term adverse psychological effects that have been described as “perpetrator-induced” traumatic stress (Rholf & Bennett, Reference Rholf and Bennett2005).
Linking these lines of inquiry and observations from previous research, this study aimed to examine the existing evidence regarding the experiences and reported impact on doctors as a result of participation in euthanasia/physician-assisted suicide (E/PAS). The specific focus for this review was on those studies that examined the impact and experiences of doctors who had undertaken Euthanasia, defined as “the deliberate administration of medications with the explicit intention of ending a patient's life (with or without an explicit request),” and/or Physician-Assisted Suicide, defined as “the prescribing or supplying drugs with the explicit intention of enabling the patient to end his or her life” (Haverkaate et al., Reference Haverkaate, van der Heide, Onwuteaka-Philipsen, van der Maas and van der Wal2001).
Methods
Inclusion criteria
The search comprised original research papers published in peer-reviewed English language literature between 1980 and October 2018. This included both studies reporting quantitative and qualitative data, with a specific focus on the impact on, or response from, physicians to their participation in PAS/E. The quantitative review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher et al., Reference Moher, Liberati, Tetzlaff and Altman2009). The qualitative review used the Critical Appraisal Skills Programme (CASP, 2013) to assess whether studies were valid, reliable, and trustworthy. The results from the qualitative and quantitative studies were summarized using a “best evidence” synthesis (Slavin, Reference Slavin1995). This entailed a systematic approach to selection of papers and a descriptive approach to synthesis of findings as detailed below.
Exclusion criteria
As this review focused on original research evidence regarding the impact of participation in E/PAS, reports of findings from surveys solely focusing on physician views about E/PAS (rather then experiences of) were excluded, as were studies of physician experiences of end-of-life care in general. Where not identified by the initial search terms, conference abstracts or editorial papers were manually excluded.
Search Strategy
The following MeSH terms were used for the search: “euthanasia” or “assisted suicide” or “hastened death” or “desire to die” or “suicide” or “end of life.” In order to ensure a sufficiently comprehensive search of published data, broad terms were needed that reflected the relevant terminology in this field. Three databases were searched: Medline, Embase, and PsychINFO. A broad initial search was necessary given the varying terminology used in this field to describe medical involvement in end-of-life decisions. As indicated above, the specific focus for this review was on those studies that examined the impact and experiences of doctors who had undertaken E/PAS in accordance with the definition (Haverkaate et al., Reference Haverkaate, van der Heide, Onwuteaka-Philipsen, van der Maas and van der Wal2001). As a result, our review aimed to identify those studies from a sufficiently encompassing initial set of search terms with this specific focus, rather than responses to a range of the many other aspects of end-of-life care. A step-wise process was undertaken with review of title, abstract, and then full paper where relevant.
Data collection
Potential papers were screened by two authors (TH and BK). As required by PRISMA and CASP guidelines, the following details were extracted from each relevant paper: study population, locality, outcome measures, and data analytic methods. Quality criteria were applied using accepted metrics for evaluation of qualitative research publications (Hannes et al., Cochrane Collaboration22, indicated by asterix in Table 1). Within a “best evidence” synthesis, a descriptive approach to summarizing key findings was necessarily derived from the systematic selection of published research findings.
Key studies of physician coping after involvement in euthanasia or physician-assisted suicide
Results
In total, the search resulted in 13,684 papers being identified. Of these, 3,385 were duplicates, leaving 10,299 results to be screened. The predominant reasons for excluding results were that they were conference abstracts or papers (n = 2,956), editorials, commentaries or ethical/legal perspectives (n = 1,838), review articles (n = 770), or were written by an anonymous source (n = 188). The majority of the remaining studies (n = 4,317) were research on opinions (general population surveys, surveys of health professionals’ views, vignettes), or had a focus on end-of-life care in general rather than euthanasia/assisted suicide. Figure 1 depicts this process of study selection. Following the screening, ten relevant papers were identified. One paper was excluded as it did not meet quality criteria (Obstein et al., Reference Obstein, Kimsma and Chambers2004). Hence, nine papers were reviewed. In keeping with the small number of studies, the diversity of methods and published data, it was not possible to pool data for statistical analysis.
Process of study selection.
Quantitative studies
The four key studies identified were surveys of clinician practices and experiences with PAS/E, in which questions related to the impact on the clinician were included. In the majority of these studies, this impact was not the key focus of the study. The most specific published report on this topic concerned a study of 405 physicians in the Netherlands (89% response rate), in a nationwide survey of physicians regarding their emotional responses to E/PAS and medical decisions at the end of life undertaken between 1995-96 (Haverkaate et al., Reference Haverkaate, van der Heide, Onwuteaka-Philipsen, van der Maas and van der Wal2001). While E/PAS remained illegal, doctors were considered exempt from liability “if they report their actions and show that they have satisfied the requirements for prudent practice” (p519). Of the 159 physicians who reported having performed euthanasia, feelings of “discomfort” were reported by 52% of the sample (described as “emotional” in 28% and “burdensome” in 25%). Forty-three percent (43%) had sought any form of support following these actions, chiefly non-professional in nature (83% of those seeking support, doing so from family or friends). Greater discomfort was reported in those cases of euthanasia (75% reporting discomfort), where it was conducted without explicit patient request, where there was a perceived greater shortening of life as a result; when the patient was a male, and the patient had a cancer diagnosis. It is important to note that alongside the discomfort, feelings of “comfort” (e.g. relief, satisfaction) were also reported by 63% of instances of PAS and 52% of Euthanasia cases, and despite the other findings, only 5% reported having doubts about conducting euthanasia.
Ganzini and colleagues (Reference Ganzini, Nelson, Schmidt, Kraemer, Delorit and Lee2000) reported on findings from a survey of 2649 physicians (65% response rate) in the US State of Oregon conducted in 1999 following legalization of PAS in 1997. One hundred and forty-four participants reported having received a total of 221 requests for PAS via prescription. The findings reported here concern the findings among the 29 respondents (18% of the sample) who had provided prescriptions in response to such a request. The reported reason given for the request was predominantly a desire for control over death (83% of cases). In only nine of these cases (31%) was the physician present at the death. The problems reported by those physicians included unwanted publicity (n = 3), difficulty understanding the law (n = 3), difficulty with hospice providers (n = 1), not knowing the patient (n = 1), and absence of somebody to discuss the case with (n = 1). A majority expressed concerns about reporting the cases (n = 18). Four participants reported ambivalence about having provided assistance, and one indicated that they would not provide assistance again. Reasons were not provided.
In 2015, Riou et al. reported findings from the 2009 “End of Life in France” Survey, a jurisdiction in which E/PAS is prohibited. This survey included questionnaires relating to 4891 deaths (response rate 35%), completed by the physicians who had certified the death. The report presented findings from physicians who had indicated utilizing “medical drugs to deliberately end a patient's life” (Riou et al., Reference Riou, Aubry, Pontone and Pennec2015). Thirty-six physicians (majority general practitioners) indicated having undertaken such actions. The report highlighted “ambivalence regarding actions,” a degree of “confusion” regarding the clinicians’ intention, and actions especially relating to the dual effect of interventions (e.g., “terminal sedation”). Four cases involved discussion with a “fully competent” patient, but findings also indicated decisions were often made on the patient's behalf, with the report indicating that in 23 cases, the actions were not discussed with the patient and no advance directive was available. Other interesting observations included the frequent delegation of the actions to a nurse, and the limited interprofessional communication around such cases at the time.
In 1998, Emmanuel and colleagues reported on a US study of a random selection of 355 US based oncologists (72.6% response rate), undertaken in 1994 (prior to legislation of PAS). Fifty-three indicated that they had been physicians who participated in PAS or Euthanasia. Although 50% reported “comfort” with their actions, 30% described an emotional burden resulting from these actions, including an impact on future practice, with 15% reporting significant adverse effects (e.g., feeling “burned out” and “avoidant”). Twenty- five percent regretted their actions, reporting feeling some conflict about their role in the patient's death, and some ongoing doubts e.g., “the patient might have benefited from living to the end”). Forty percent described a fear of prosecution.
Qualitative studies
Five qualitative studies met accepted qualitative research assessment criteria (Hannes et al. Cochrane Collaboration, Reference Hannes, Noyes, Booth, Hannes, Harden, Harris, Lewin and Lockwood2011). The following six themes arose from the synthesis of qualitative studies: 1) experience of the request; 2) understanding the patient; 3) the doctor's role and agency in the death of a patient; 4) the personal impact on the doctor; and 5) professional guidance and support.
Experience of the request
A diversity of responses occurred relating to the experience of the request for assisted suicide from a patient. It appeared that for those more experienced in the care of dying patients, the managing of such requests was perceived as being in “parallel with other end-of-life decisions” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004). In one report (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001), clinicians reported that many requests were “exploratory,” reflecting fears regarding the uncertain process of dying. Reflecting on requests occurring in the last stages of life, this report highlighted the importance to clinicians of exploring the “why” rather than “when” of the request. A recent study among a sample of Dutch clinicians indicated a sense of their role being “overlooked” in the public debate about E/PAS, particularly in those experiencing requests not based on a medical condition (Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2016). This study reported statements from clinicians such as “people have no idea what it entails for a GP” and “I felt (then) that the family were putting an incredible amount of pressure on me.” A notable perspective reported in one study was the sense of failure as a clinician when confronted by a patient's request for assisted suicide: “whatever you are doing isn't good enough,” and “it's not meeting my (patient's) needs” (Dobshca et al., Reference Dobscha, Heintz, Press and Ganzini2004).
Understanding the patient
The studies identified a range of experiences and reflections from clinicians concerning their consideration, in retrospect, of the patient's motivations and the extent to which they were satisfied with their understanding of their patient at the time. This was clearly seen as a distinct task for the clinician by participants in at least two of the studies (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001; Dobshca et al., Reference Dobscha, Heintz, Press and Ganzini2004). Issues noted included the dominance of the patient's desire for assertion of autonomy and control (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001; Dobshca et al., Reference Dobscha, Heintz, Press and Ganzini2004) and also “existential concerns” such as coping with “a world undone” (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001). Others expressed a concern at having, on later reflection, “not full understanding” or not agreeing with the patient's perspective or choices, and having “not communicated enough” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004). One participant summed up the dilemma as needing to understand “why to die, not when to die” (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001). Others reflected on “insufficient knowledge of alternatives”; or in retrospect, the perceived influence of others (e.g., family; Riou et al., Reference Riou, Aubry, Pontone and Pennec2015). The experience of the perceived extension of E/PAS to “address non-medical reasons” provoked the comment that “we are getting into a situation where people are choosing to die because of loneliness” (Snijdewind et al., Reference Snijdewind, van Tol, Onwuteaka-Philipsen and Willems2016).
“Being a Doctor”: Role and agency in the death of a patient
A dominant theme that was identified across these studies could best be described as “Being a Doctor: Role and agency in the death of a patient.” As expressed by one participant, “to have to decide the moment of death has created enormous unrest around the deathbed”28 and that the role was “at odds with myself and my role” (Emanuel et al., Reference Emanuel, Daniels, Fairclough and Clarridge1998). Others reported experiencing tension with what was perceived as the societal expectations of the “modern doctor” (i.e., to hasten death) despite personal or professional misgivings (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004; van Marwijk et al., Reference Van Marwijk, Haverkate, van Royen and The2007). Similarly, this was encompassed in the view that even if it was considered legal, “I felt uncomfortable doing it myself” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004).
This perception related to the ongoing emotional ambivalence about the act, reflecting the experience of a tension between “duty to patient” vs. “unacceptable act” (Emanuel et al., Reference Emanuel, Daniels, Fairclough and Clarridge1998; van Marwijk et al., Reference Van Marwijk, Haverkate, van Royen and The2007). Independent of the clinician's desire to deliver patient-centered care, doubt and uncertainty persisted for some clinicians as to whether they had optimally assisted the patient. This particular theme is perhaps best exemplified in the experience of one participant:
“(Not about right or wrong …) but my thoughts are about the fact that I know that it is a very difficult thing as a physician … I wonder if I have the necessary emotional peace to continue to participate” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004).
A related element of this theme was one that concerned “understanding the patient” including a sense of “duty,” “obligation” to patient, and “relief of suffering.” Findings included perceived conflict between patient wishes, patient self-determination and professional roles, responsibilities, and the concept of “duty.”
Personal repercussions
In regards to adverse effects, these were often expressed in terms of reflecting on the responsibility inherent in the taking of a life: e.g., “I no longer know whether it is good for me”; “we are appointed to take someone's life” (van Marwijk et al., Reference Van Marwijk, Haverkate, van Royen and The2007).
Across a number of the studies, similar enduring adverse impacts were noted “I felt very lonely. I couldn't share that with anyone … I felt powerless and alone.” (van Marwijk et al., Reference Van Marwijk, Haverkate, van Royen and The2007).
This adverse impact was expressed poignantly in one study in terms of a sense of enduring “damage” from the experience: “you've got an indelible mark on your soul” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004). Furthermore, another participant remarked that “Despite doing something for the patient” … “I still always have a sense of guilt. I feel as if I'm an executioner. Who am I to have the right to do this?” (van Marwijk et al., Reference Van Marwijk, Haverkate, van Royen and The2007).
Another element of this impact appeared to be the significance of later reflection itself, reactions that may not have been anticipated at the time of undertaking the PAS. A perceived gap between the “thought” or concept of E/PAS and active participation was noted: a “large gap between idealistic agreement with a thought and being actively involved in it … an immeasurable gap I hadn't anticipated” (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004). In some instances, discomfort was related to enduring perception by participants that, on reflection, perhaps not everything had been done to address the patient's suffering.
Examples of being “moved” by the experience, experiencing positive professional learning and growth through the experience were noted by some. These consequences included the capacity to understand and respond to the needs of dying patients, a perception of providing better care to future patients or a sense of satisfaction in having fulfilled the patient's wishes and relieved suffering. Such growth included the approach to needs of future patients along with growth in “oneself” as a clinician (Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004), including a greater appreciation for palliative care for future patients. In some instances, this was expressed in terms of a sense of “doing the right thing” … “comfort in helping a patient end his or her life the way the patient wished” and being more aware of future patients’ needs (Emanuel et al., Reference Emanuel, Daniels, Fairclough and Clarridge1998).
Professional guidance and support
A consistent theme across these studies was the perceived limited availability and use of professional advice and support by the participating clinicians in dealing emotionally with requests or coping with the impact. It is notable that discussions with colleagues were rare, and reference was made to a professional “code of silence” (Kohlwes et al., Reference Kohlwes, Koepsell, Rhodes and Pearlman2001). Instead of these complex clinical scenarios being assessed by a multidisciplinary team providing diverse impressions before consensus about the optimal treatment is determined, PAS/E practice appears individually governed. This is particularly significant when bearing in mind that studies included those in jurisdictions in which assisted suicide was legal at the time. When support was sought, this was chiefly from non-professional sources (e.g., family).
Discussion
Main findings/results of the study
This review examines research regarding the impact of participation by clinicians in E/PAS on clinicians. A small number of reports were identified including both survey based quantitative studies and qualitative research. Despite the relevance of the clinician's role (both in practice and in legislation where it exists), it is notable that few studies have examined the responses, experiences, and impact on clinicians of participation in assisted suicide.
Where measured, 30-50% described emotional burden or discomfort about the participation (moreso in cases of euthanasia than PAS), while findings also identified a comfort or satisfaction in believing the request of the patient was met. A smaller number (15-20%) reported significant ongoing adverse personal impact. A minority of doctors sought personal support, and when they did so, it was generally from family or friends rather than colleagues. The themes identified from the qualitative studies indicate the diverse and often complex responses among doctors, reflecting personal and professional impacts, reflections on their role and the care of dying patients, and their approach to seeking advice or support.
In regards to the challenges faced in clinical assessment of a request for E/PAS, the findings point to the clinician self-reported limitations in understanding the forces influencing the patient's request. In one Dutch study, depressed patients were four times more likely to request euthanasia than the non-depressed (van der Lee at al., Reference Van der Lee, van der Bom, Swarte, Heintz and de Graeff2005). Ganzini reported unrecognized depression in patients seeking PAS in Oregon, with 26% of initial inquiries coming from depressed subjects, and 33% of those completing PAS having had unrecognized and untreated depression (Ganzini et al., Reference Ganzini, Goy and Dobscha2008). Another major study of 21,000 Scottish oncology outpatients revealed that 73% of those found to be depressed were not in receipt of any treatment for this (Walker et al., Reference Walker, Hansen, Martin, Symeonides, Ramessur, Murray and Sharpe2014). An additional factor driving the request for E/PAS is demoralization, a state distinguishable from depression, that is associated with feelings of greater dependency on others or the perception of being a burden, along with existential distress, and a loss of meaning (Kissane et al., Reference Kissane, Clarke and Street2001; Robinson et al., Reference Robinson, Kissane, Brooker, Hempton and Burney2017) and experienced by up to 15% of palliative care patients (Robinson et al., Reference Robinson, Kissane, Brooker and Burney2015).
These factors highlight the barriers that can exist to clinical assessment of patients and comprehensive appraisal of decision-making capacity. Furthermore, some clinicians, in retrospect, acknowledged limitations in the care provided, and in some cases, reported a belief that they had gained a better understanding of the needs of dying patients after reflecting on these difficulties. The findings also accord with the evidence regarding the frequent reasons for request for E/PAS (Hendry et al., Reference Hendry, Pasterfield, Lewis, Carter, Hodgson and Wilkinson2013; Emanuel et al., 2017), reflecting prominent existential concerns (e.g., concerns of loss of dignity or independence and control), contrasting with lesser prominence of uncontrollable physical symptoms (such as pain). Furthermore, the findings point to the level of “moral” discomfort experienced when such “existential” aspects of suffering underpin requests, or perceived extension of E/PAS to non-terminal conditions (Quill, Reference Quill2018; Snijdewind et al., 2018). While this review focused on studies in which participants had participated in provision of E/PAS, the emotional demands and burden for clinicians in responding to requests identified in this group were noteworthy and have been highlighted in other studies (Georges et al., Reference Georges, The, Onwuteaka-Philipsen and van der Wal2008). Taken together, the findings from this review support evidence citing the unique difficulties clinicians face in addressing such suffering and existential issues for patients (Emanuel et al., Reference Emanuel, Onwuteaka-Philipsen, Urwin and Cohen2016).
It is also acknowledged that some clinicians reported a perception of positive aspects of their participation. Where positive aspects were identified, these included a perception of having “learnt” or “grown” through the experience in reflecting on the care provided, sometimes identifying gaps in care (e.g., in ability to understand patient's motivations) and its impact on the care of future patients. For others, there was a wish to avoid participation in E/PAS in the future. Nevertheless, it is important to appreciate the complexity of the impact, even in settings in which the practice was sanctioned, given the findings in the limited research to date.
What this study adds
Within the limited available literature, noteworthy findings emerged from this review. They suggest a substantial short- and long-term emotional impact for a significant proportion of clinicians who have participated in E/PAS. Personal and professional support needs are often unaddressed, with only a minority of those reporting adverse impacts seeking support from colleagues, and when support was sought, respondents relied chiefly on family or friends.
Limitations of the study and this field of research
All studies carry the important caveat of retrospectivity and varying time frames since participation in the E/PAS. There are varying definitions for E/PAS, this problem reflecting some of the ambiguity in clinical practice that is reported by clinicians. Bias is also relevant in a topic that has been polarizing in both professional and public debate. Recruitment and participation bias need to be considered, as it is possible that those most affected by their experience will be most motivated to participate in the studies. Nevertheless, representativeness of a sample is of less concern when undertaking the exploratory nature of qualitative research. In addition, such a review is open to a critique of author bias in the evaluation of the findings. The selected papers were reviewed in detail by two of the authors (BK, TH), and the authorship team comprises diverse clinical and discipline expertise and perspectives: general medicine, epidemiology, and research methods (JA), psychiatry and palliative care (BK, DK, MV).
Although it is noteworthy that the gender of the patient appeared to influence response to E/PAS among clinicians, factors such as gender or socio-cultural backgrounds among clinicians and patients were generally not reported. Quantitative findings are very limited, being based on limited items within larger surveys of clinical practice. Ambiguity in definitions regarding end-of-life decisions and E/PAS is also a key limitation. In some respects, this reflects the same theme that emerged in the review, i.e. the impact of the uncertainty by clinicians of the intention and outcome of their actions, especially as they pertain to practices such as opioid use among the dying. Even in the most specific study addressing the emotional impact of E/PAS on clinicians21, the focus of the study included responses to “euthanasia, assisted suicide, the ending of life without an explicit request from the patient, and alleviation of pain and other symptoms with high doses of opioids”, thereby potentially conflating what might be considered standard clinical practice (i.e. use of opioid analgesics for relief of pain) with the more specific intentional actions aimed at ending the patient's life. In other reports (e.g., the Dutch study by Obstein et al., Reference Obstein, Kimsma and Chambers2004), the term “active euthanasia” is used, no specific definition is detailed, and interview questions refer to assisting patients “in their pursuit [sic] of dying with dignity” and carrying out “death with dignity” acts.” In the French study (in a setting where such actions are not legal), the phrase “using medical drugs to intentionally end the patient's life” was used. In others, the term “assisted suicide” is used (e.g., Dobscha et al., Reference Dobscha, Heintz, Press and Ganzini2004) without more specific definition. Emmanuel et al. (Reference Emanuel, Daniels, Fairclough and Clarridge1998) used two screening questions: “have you ever actually injected drugs with the intention of ending a patient's life?” and “have you ever actually prescribed drugs to a patient knowing the patient intended to use them to end his or her life?” The study by Ganzini et al. (Reference Ganzini, Nelson, Schmidt, Kraemer, Delorit and Lee2000) referred to implementation in response to explicit requests for prescription for a lethal medication (in accordance with the Oregon Death with Dignity Act).
Consideration needs to be given to the broader societal, cultural, ethical, and legal frameworks. Most of the studies have been conducted in Europe and the USA, and for the most part in settings in which the practice has been legalized (e.g., Netherlands and Oregon, USA). Such factors influence the participation in research and the context of these practices – in those settings where it is not legal or where studies were conducted prior to legalization, these legal and cultural influences are likely to significantly influence research participation and the nature of clinician responses.
Conclusions
Participation in E/PAS can have a significant emotional impact on participating clinicians. For a number of clinicians this can include significant adverse long-term personal and professional consequences. For some, this experience has been a focus for reflecting on ways to improve care of dying patients, and for others, a sense of having respected a patient's requested form of death. Nevertheless, the role of implemented E/PAS can contrast with perception of professional roles, responsibilities, and personal expectations. Clinicians often acknowledge the difficulty in understanding the basis for a patient's wishes for E/PAS and assessing the needs of patients in this setting. For some, this can be a source of ongoing discomfort with the process, with a perceived lack of expertise in responding to existential concerns. This suggests the complexity of E/PAS for participating clinicians. The impact on clinicians is a largely neglected area of research, as evidenced by the limited research data available. Among the issues future research needs to explore include: how we can best understand the meaning of patients’ requests for E/PAS; ways to strengthen clinician expertise in responding to exploring and responding to existential concerns and non-physical forms of suffering; how might we understand why some doctors (or any other participating health professionals) are negatively emotionally affected by involvement in E/PAS, yet others can feel fulfilled by similar actions; and how can we adequately support clinicians as they navigate this challenging area.
