Responding to Requests for Aid-in-Dying: Rethinking the Role of Conscience
This case study illustrates the complex role that a physician’s conscience can play in end-of-life care. We examine a case from Vermont in which a terminally ill patient requests aid-in-dying from her primary care physician under the state’s “Patient Choice and Control at End of Life” Act (Act 39). The physician feels conflicted: she is opposed to prescribing death-hastening medication but does not want to abandon her patient. Much of the medical ethics literature on conscience focuses on whether health care professionals should be permitted to abstain from providing morally contested medical services. Our analysis highlights the interplay of conflicting values that inform the physician’s engagement with aid-in-dying, demonstrating that the issue is often more nuanced than the question of whether or not a physician can (or should) opt out.
Conscience, End-of-Life Care, Medical Ethics, Nonabandonment, Patient-Provider Relationship, Physician Aid-in-Dying/Physician-Assisted Suicide, Terminal Illness
Mary, an artist residing in Vermont, was a single woman in her 60s with a long-term cancer diagnosis. Determined to live as fully as she could in whatever time she had left, Mary rarely complained about her illness. She adjusted her lifestyle over the years to accommodate her symptoms and accepted her limitations. She was fortunate to have a support network of close friends who cared for her actively throughout her illness. After many years of surgeries and treatments, however, her quality of life began to diminish. Once active and energetic, Mary was no longer able to read, hike, and enjoy her creative pursuits as she had in the past, and she spent much of the day sleeping.
Mary had been an advocate for Vermont’s “Patient Choice and Control at End of Life” Act (Act [End Page 67] 39) since the law passed, and she hoped to pursue medical aid-in-dying (AID). Mary knew that death was inevitable and that AID would give her control over the dying process, enabling her to plan her death in her own time and on her own terms. Pursuing AID would also allow her to decide how she wanted to live out her remaining time. As part of the Vermont Study on Aid-in-Dying, an ethnographic study of the implementation and cultural impact of Act 39,1 we interviewed several of Mary’s caregivers and medical providers, including her pastor, who visited her once a month in her home to talk about her end-of-life concerns. The pastor related Mary’s desire to use AID to Mary being deliberate and intentional about how she lived: “Some people let life happen to them . . . she was somebody who made decisions about who she wanted to be, where she wanted to live, how she wanted to live, and with whom she wanted to live, and this [type of death] just fit that. She wanted to both be sure that life as she wanted to live it was done, and she wanted to be able to be present, and positive.”
Mary recognized that she had to meet many conditions in order to qualify for AID and that acquiring the life-ending medication could take a long time. When she began to have difficulty swallowing, she realized that it was time to begin the process because she had to be able to self-administer and swallow the medication. At her next appointment with her primary care physician, Dr. Jones, Mary asked her whether she would be willing to prescribe under Act 39. Dr. Jones felt conflicted about this request. On the one hand, because she strongly believed in the capacity of local hospice and palliative care services to alleviate suffering and provide excellent care for dying patients, she was at least partially inclined to see assisted dying as a “cop-out” pursued by patients who had not truly exhausted all of their options. On the other hand, Dr. Jones was committed to the ethos of patient choice and did not want to abandon Mary, a long-time and beloved patient, during this difficult time. She wondered how best to support Mary’s end-of-life wishes without compromising her own values.
Background: Conscience in Medicine
This case illustrates the complex role that a physician’s conscience can play in end-of-life care. Conscience can be understood as a mode of thought in which individuals consider how actions accord or conflict with core moral principles and values, and a commitment to act in accordance with such moral judgments (Childress, 1979). Conscience may be informed by religious or secular ethical beliefs or others source of moral insight; furthermore, it can be viewed as revealing objective values or, alternatively, as tracking the agent’s own subjective values (Barfield, 2007; Lawrence & Curlin, 2007).
While some bioethicists view conscience as essential to the ethical practice of medicine even when no moral dilemmas or conflicts are presented (Sulmasy, 2008), much of the literature on conscience focuses on the moral contours of refusal. This work considers whether health care professionals should be permitted to abstain from providing certain types of morally contested medical services, such as physician aid-in-dying, abortion, and emergency contraception (Brock, 2008; Cantor & Baum, 2004; Card, 2011; Little & Lyerly, 2013; Stahl & Emanuel, 2017; Wicclair, 2011). Paramount is the question of how to manage the tension between medical providers’ right of conscientious refusal and patients’ right to legally authorized health care services. Some have argued that physicians who refuse to participate in morally contested medical services ought to be required to refer patients to willing providers (cf. Berlinger, Jennings, & Wolf, 2013). This “conventional compromise” (Brock, 2008) has been criticized on two fronts: referral may not be possible in communities in which physicians [End Page 68] willing to perform the contested service are scarce, and, even if feasible, some physicians may believe that the act of referral is also a violation of their conscience (Wicclair, 2000). Nevertheless, insofar as refusing to refer when there is another willing provider may be viewed as stepping between the patient and the desired medical service as opposed to just stepping away, there is an important distinction between being unwilling to refer the patient to a different provider and being simply unable to do so.
Conflicts of conscience are conceptualized largely in terms of threats to moral integrity. From this perspective, being obliged to act in a way that violates one’s conscience is not merely unethical but also can threaten a provider’s conception of self, a form of self-betrayal that may lead to loss of self-respect (Wicclair, 2000; see also Blustein & Fleischman, 1995). However, this focus on threats to moral integrity can lead us to think about conscience in terms of activities to be avoided. Others have pointed out that conscience is an evolving product shaped by ongoing moral judgments (Childress, 1979), and that a focus on the rights of individual providers can abrogate a sense of mutual responsibility for patient care (Charo, 2005; Giubilini, 2014). McLeod (2011) argues that acting with conscience can falter if medical providers are principally concerned with protecting their own individual rights and moral integrity. Instead, McLeod advocates a relational approach, in which having a conscience encourages morally responsible agency attuned to the welfare of others. According to this view, conscience may be useful in forcing us to rethink our values or stretch our horizons regarding ethically acceptable behavior. This type of approach opens a space for more positive formulations of conscience that emphasize commitments to care and responsibility for others (Berlinger, 2016, pp. 124–126).
The legal context of aid-in-dying and providers’ rights of conscientious objection
Statutes permitting a physician to write a prescription for a lethal dose of medication to a terminally ill adult patient for the purpose of ending that patient’s life have been passed in Oregon, Washington, Vermont, California, Colorado, the District of Columbia, and Hawaii. In general, these laws share similar safeguards, including requirements that eligible patients be mentally competent, have a life expectancy of less than six months, and undergo a waiting period before receiving the medication, which must be voluntarily self-administered (Ganzini & Back, 2016). AID is also authorized in Montana via judicial ruling, but because it is not legislatively regulated there are no safeguards or requirements.
In addition to safeguards designed to protect patients from abuse and coercion and to ensure that their participation is voluntary, these statutes also include provisions stating that participation for health care providers is voluntary, effectively permitting physicians and pharmacists to opt out for reasons of conscience.2 The legal precedent for conscientious objection from authorized health care services can be traced to the emergence of “conscience clause” legislation following the Supreme Court’s decision to legalize abortion in Roe v. Wade. In 1973, Senator Frank Church, a Democrat from Idaho, sponsored the first federal conscience clause, which enabled federally funded medical professionals and institutions to refuse to perform abortions on the basis of religious or moral beliefs. The scope of conscience clause legislation was later extended, permitting health care professionals to abstain from performing in vitro fertilization, treating transgender patients, and participating in federally funded medical research (Stahl & Emanuel, 2017). Conscience clause legislation has received renewed interest and attention during the Trump presidency with the rollback of the Obama [End Page 69] administration’s contraceptive coverage regulations (Stahl & Lynch, 2017) and the establishment of the Conscience and Religious Freedom Division within the US Department of Health and Human Services (US Department of Health and Human Services, 2018). However, while conscientious objection in medicine may be conventionally understood to be synonymous with religious objection, it is important to underscore that conscience clauses protect providers’ rights to refuse to participate in medical services for a broader swath of moral reasons, as we detail below.
Dr. Jones did not come to the clinical encounter with a clearly worked out stance on her role in AID. As she told us in an interview, “I’m of two minds about it, which I’m always trying to rectify a little bit.” Instead, Dr. Jones held multiple relevant values that did not point to a clear-cut response to Mary’s request. She thus lacked the kind of strong moral conviction often taken for granted in cases of conscientious objection. In her first-hand experience in caring for dying patients, the resources available through hospice and palliative care, along with alternatives to Act 39 such as hastening death by voluntarily stopping eating and drinking (VSED) and palliative sedation, could satisfy any patient’s end-of-life needs. VSED is a method of hastening death by refraining from eating or taking in any fluids, in which patients are kept comfortable with pain medications and by swishing water in their mouths to prevent the sensation of thirst. Palliative sedation is the continuous administration of pain medication so that the patient is rendered unconscious for the remainder of her life. Although Dr. Jones did not support Act 39, she was also committed to maintaining her relationships with her patients, and an important component of doing so was respecting their choices and helping them to pursue them: “I’m all about people choosing what they want.” Therefore, despite her own objections, the mere existence of Act 39 as a legally permissible end-of-life option made Dr. Jones feel a responsibility to help Mary pursue AID.
The ethical issues at stake in this case can be understood by appealing to some commonly accepted principles of biomedical ethics. Although she did not explicitly invoke these principles, Dr. Jones’s thinking about this case can be understood in terms of respect for autonomy, beneficence, and fidelity to patients (Beauchamp & Childress, 2013). Each of these principles gives rise to obligations. Respect for autonomy requires that physicians allow patients to make their own decisions regarding medical care. At a minimum this means, negatively, that physicians should not interfere in a patient’s pursuit of her own choices (e.g., by withholding relevant diagnostic information or by coercing her to pursue a particular treatment path). Moreover, a physician is sometimes additionally required, positively, to facilitate pursuit of a patient’s choice. Exactly what the principle of respect for autonomy requires in the circumstances in which Dr. Jones found herself is not obvious: Was her obligation merely not to prevent Mary from accessing AID, did she have some obligation to refer Mary to a physician who was willing to prescribe, or did her obligations extend even further? What was obvious to Dr. Jones was that she felt compelled to go beyond the minimum requirement of noninterference to promote Mary’s choice by assisting her in pursuing Act 39.
The principle of beneficence requires that physicians promote the welfare of their patients. Again, how this principle applies to Dr. Jones’s case is contestable. Some hold that facilitating a patient’s death never promotes her welfare (cf. Kass, 2002); others argue that pain and distress can make a patient’s life, on balance, worse for her than death (cf. Battin & Quill, 2004). From her sentiment that other available options could satisfy any patient’s end-of-life care needs, we might infer that Dr. Jones did not see AID as promoting Mary’s welfare.
Finally, maintaining relationships with one’s patients is a vital component of the principle of fidelity, or nonabandonment. It would have been possible for Dr. Jones to accomplish this without becoming heavily involved in Mary’s pursuit of Act 39 (e.g., by remaining available for or involved in Mary’s medical care for the remainder of her life). [End Page 70] However, Dr. Jones felt obligated to do more to ensure that Mary did not feel abandoned.
Although Dr. Jones was committed to promoting patient choice and well-being, and to not abandoning her patients, these commitments did not illuminate a clear path of action in Mary’s case. Whether and to what extent the principles of respect for autonomy, beneficence, and nonabandonment require physician participation in AID is unclear. Part of the role of conscience, then, is to provide individual physicians with guidance in cases like this in which these principles fail to give clear direction. Dr. Jones’s case highlights how the interplay of conflicting values makes the issue of responding to requests for AID more nuanced than the question of whether or not a physician can—or should—opt out entirely.
Dr. Jones decided that the best way to navigate these conflicting values was to do everything possible to help Mary short of writing the lethal prescription. Although she knew that the support she gave was “indirectly” helping Mary to end her life, Dr. Jones felt that this was an acceptable role for her to play because her goal in doing so was to help Mary receive desired medical care. In contrast, writing the prescription would, in Dr. Jones’s view, “directly” contribute to Mary’s death. Therefore, Dr. Jones felt that doing so would violate her conscience: “For me personally it crosses a line to actually write a prescription that I know with certainty the purpose of it is for someone to die.”
The distinction that Dr. Jones drew between direct and indirect causation is closely related to distinctions between killing and letting die, doing and merely allowing, and intending and merely foreseeing an outcome of one’s actions. These distinctions are also invoked in many other areas of bioethics, such as the justifications for administering medications with the intention of relieving a patient’s pain despite knowing that this will also hasten her death, and withholding versus withdrawing treatments. While physicians find withdrawing life-prolonging treatments more psychologically difficult and more ethically problematic than withholding such treatments (Society of Critical Care Medicine Ethics Committee, 1992; Chung, Yoon, Rasinski, & Curtin, 2016), professional societies maintain that withdrawing and withholding treatment are ethically equivalent (American Medical Association, 2016; Snyder, 2012). There is less consensus within the bioethics literature, however, with much back-and-forth between those who argue against such distinctions (Rachels, 1975; Kagan, 1989; Kuhse 1998) and those who defend them (Nesbitt, 1995; Asscher, 2008; Reinhard, 2016). The defensibility of any of these distinctions is beyond the scope of this article, but Dr. Jones’s invocation of this idea suggests that it may be illuminating to conduct further investigations into the relationship between how a physician conceives of her actions and how her conscience shapes her felt obligations to patients.
Some would argue that by helping Mary to obtain AID, Dr. Jones was just as morally responsible for Mary’s death as the physician who actually wrote the prescription (Trigg, 2017). Dr. Jones acknowledged that she, too, sometimes finds herself thinking this way. But despite some uncertainty about how exactly this distinction mattered, Dr. Jones was sure that although her conscience would not allow her to write the prescription for Mary, it required her to stay involved in Mary’s care throughout the AID process. In this way, Dr. Jones identified a middle path that allowed her to reconcile her opposition to Mary’s choice with her deeply felt personal and professional obligation to help Mary receive the kind of care that she wanted (Campbell, Hare, & Matthews, 1995).
In addition to Dr. Jones, we asked the 28 other physicians in the Vermont Study on Aid-in-Dying about their reasons for either participating in AID or objecting to doing so. From these responses, we identified two general categories into which such objections may fall: appeals to personal moral beliefs, and appeals to the role of physicians or the scope of medical practice. Objections falling into either category can be spelled out in multiple ways. The first encompasses convictions that it would be wrong for one to participate in AID. For example, this category includes religious objections and the moral belief that suicide is wrong in all cases. The second encompasses views that it is inappropriate for any physician to participate in AID because of [End Page 71] the nature of the medical profession. This category includes objections that appeal to the possible bad consequences of physician participation in AID: it may lead to patients worrying that their physicians will kill them or otherwise degrade trust in the medical profession. It also includes the view that AID crosses a line that other clinical practices do not (e.g., stopping chemotherapy, terminally extubating a patient, or even supporting a patient in VSED). Which category or categories a physician’s objections belong to is likely to determine, in turn, what level of participation she finds either acceptable or problematic.
Dr. Jones did not appeal to her role as a physician or the proper goals of medical practice, the second category delineated above, in explaining her view that it would be wrong for her to write the prescription for Mary. Because she did not see assisting Mary in her pursuit of AID as outside the scope of medical practice, Dr. Jones felt that she had the same duties to Mary as she would have to any other patient. Her personal moral objection belongs to the first category: she objected to being the one who actually wrote the prescription, because she saw doing so as crossing a line in her personal moral code. Thus, referring Mary to another physician who was willing to write the prescription while otherwise remaining heavily involved in Mary’s care allowed Dr. Jones to fulfill her duties without compromising her own moral beliefs.
When Dr. Jones initially informed Mary that she did not feel comfortable prescribing under Act 39, Mary was extremely disappointed. “Nobody likes that answer coming out of their provider that they’ve had an ongoing relationship with,” Dr. Jones recalled. “She and I navigated it, but it was not always pleasant for either one of us.” Dr. Jones did assist Mary in identifying another physician willing to write the prescription, agreed to be the second physician certifying that Mary met the legal requirements, and worked with the prescribing physician to make sure that contingency plans were in place for the day of Mary’s death. She reflected, “It was still important to me for her to get what she wanted even though I didn’t agree with it. And so, the way you sort of show that commitment is by doing crazy things, I guess . . . by hopping on the phone and emailing around.” While some health systems in other states have developed navigator programs to assist patients in identifying physicians willing to participate in AID (Loggers et al., 2013; Nguyen, Gelman, Bush, Lee, & Kanter, 2017), no such systems were in place at this time in Vermont. Moreover, even if such a program had been available at a major Vermont hospital, Mary’s primary oncology care was based in a neighboring state, in which AID was illegal.
Dr. Jones noted “a pretty strong obligation to make sure that it goes as it’s supposed to go.” To that end, she reported spending “a lot of time thinking ahead of all the unexpected things that can happen.” Her worries included Mary losing consciousness before taking the full dose, vomiting after ingesting the medication, or simply not dying. Dr. Jones and the prescribing physician decided what other medications Mary should have available in the house to treat any pain or agitation should they occur, who would give these medications to her and under what circumstances, and which person would be responsible for calling Dr. Jones if further assistance were necessary.
Dr. Jones’s case illustrates how simply deciding to refer a patient desiring AID to another physician who is willing to prescribe may not adequately satisfy a physician’s conscience. In addition to the potential difficulty in finding a physician willing to prescribe and the objection that some providers may have to the act of referral itself, recognizing the moral force of a physician’s obligations to her patients highlights another problematic dimension of the referral compromise. Referring a patient can feel troublingly like one is abandoning her, and thus does not offer as neat a solution to conflicts of conscience as is sometimes suggested. Dr. Jones’s moral stance on AID did not preclude her from referring Mary to another physician who was willing to prescribe. Yet she did have some difficulty in finding such a provider—she eventually reached out to an advocacy organization for assistance with this task—and, even once she had found another physician to assist Mary, Dr. Jones did not feel that her own obligations to Mary had been discharged. [End Page 72]
Dr. Jones’s strong sense of responsibility and commitment to her patients is relevant to understanding how physicians navigate conflicts of conscience in other areas of end-of-life care. Participating in palliative sedation, discontinuing life-prolonging interventions, and caring for patients who elect to pursue VSED can all engender conflicts of conscience (Horowitz, Sussman, & Quill, 2016; Steiner, Patton, Prutkin, & Kirpatrick, 2018; Quill, Ganzini, Truog, & Pope, 2018). As Dr. Jones’s case illustrates, conscience does not always give rise to an objection to participating in certain medical practices; a physician’s conscience may instead compel her to provide certain types of care. Research on abortion care has shown that some clinicians feel such conscientious commitment to care, especially when restrictive legislation constrains certain aspects of the clinical encounter (Buchbinder, Lassiter, Mercier, Bryant, & Lyerly, 2016; Dickens & Cook, 2011; Harris, 2012; LaFollette & LaFollette, 2007).
The subtle distinctions at play here and physicians’ and ethicists’ difficulty in identifying the boundaries of moral responsibility demonstrate the importance of a nuanced understanding of the role of conscience in such cases. Such an understanding will require, first, a clear definition of conscience as well as a framework for analyzing forms and degrees of moral complicity. Conflicts of conscience can arise in a variety of ways: laws (or institutional policies) may condone practices that clinicians object to, clinicians may feel compelled to provide services that the law forbids them from offering, or clinicians may find themselves holding two values that come into conflict with one another in the absence of any external constraints. Navigating conflicts that arise in this third way is further complicated once we note that most people do not have a perspicuous ordering or weighting system for the values that they hold. This may lead to feelings of ambivalence such as those that Dr. Jones experienced.
The latter kind of case is probably the most common. Unfortunately, it is also the least likely to be resolved by implementing policies that protect physicians’ rights of conscientious objection. What is more important is to equip health care professionals with the skills needed to, first, identify and evaluate their own values and moral principles, and second, to navigate the multitude of situations that arise in medical practice that put these values in tension. Finally, tactics for alleviating this tension and ameliorating the moral distress that it causes health care providers must also be devised (Lievrouw et al., 2016; Rushton, 2017).
Mary died peacefully at home, surrounded by her four closest friends, her prescribing physician, and a palliative care nurse. After a communal toast with wine and a group hug, Mary ate a mixture of homemade apple sauce and a lethal dose of Seconal and lay back in her recliner chair. Her friends circled her, holding her hands, massaging her feet, and stroking her hair. Meaningful music, which Mary had selected, played in the background. After a few minutes, she fell into a deep and comfortable sleep, and took her final breath an hour after ingesting the medication.
1. How does Dr. Jones’s response to Mary challenge conventional bioethical views of conscientious objection?
2. What are the limits of a commitment to nonabandonment?
3. Given a more robust understanding of the role of conscience in medical care, what form, if any, should protections for conscience take?
This research was supported by a UNC Junior Faculty Development award, a research grant from the National Science Foundation (no. 1630010), and a Greenwall Faculty Scholars Award to Mara Buchbinder.
Conflicts of Interest. The authors have no conflicts of interest to report.
1. The Vermont Study on Aid-in-Dying (Vermont SAID) documented the implementation and cultural impact of Vermont’s aid-in-dying statute. Data include 1) 144 interviews with patients, caregivers, physicians and nurses, activists, legislators, and other policy stakeholders; 2) participant observation in community-based advocacy and educational events, professional conferences, and judicial hearings, and 3) analysis of legal documents. The study was approved by the Internal Review Board at the University of North Carolina at Chapel Hill. The names used in this case vignette are pseudonyms.
2. See https://leginfo.legislature.ca.gov/faces/billTextClient.xhtml?bill_id=201520162AB15; http://www.oregon.gov/oha/ph/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Pages/ors.aspx; http://apps.leg.wa.gov/RCW/default.aspx?cite=70.245&full=true; https://www.deathwithdignity.org/wp-content/uploads/2015/11/DC-Death-with-Dignity-Act.pdf; http://www.leg.state.vt.us/docs/2014/Acts/ACT039.pdf; http://www.leg.state.co.us/LCS/Initiative%20Referendum/1516initrefr.nsf/b74b3fc5d676cdc987257ad8005bce6a/99fbc3387156ab5c87257fae00748890/$FILE/2015-2016%20145bb.pdf.