Article Text
Abstract
On 19 July 2016, three medical organisations filed a federal lawsuit against representatives from several Vermont agencies over the Patient Choice and Control at End of Life Act. The law is similar to aid-in-dying (AID) laws in four other US states, but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information. The lawsuit raises questions about whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying, but neglects the question of how physicians should approach patients who may not know enough about AID to request it. In this article, I examine the possibility of an affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to be patient-initiated, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.
- End of Life Care
- Bills, Laws and Cases
- Suicide/Assisted Suicide
- Clinical Ethics
- Truth Disclosure
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On 19 July 2016, the Vermont Alliance for Ethical Healthcare and the Tennessee-based Christian Medical and Dental Associations filed a federal lawsuit against representatives from several Vermont agencies over Vermont's Patient Choice and Control at End of Life Act (Act 39).1 The act, which was passed by the state legislature and signed into law in May 2013, authorises Vermont physicians to prescribe a lethal dose of medication to a mentally competent, terminally ill adult patient for the purpose of ending the patient's life. Act 39 is similar to aid-in-dying (AID) laws in four other US states (Oregon, Washington, California and, most recently, Colorado), but the lawsuit hinges on a distinctive aspect of Vermont's law pertaining to patients' rights to information.
Act 39 refers to a pre-existing mandate to inform patients of all options for end-of-life care and treatment under the state's Palliative Care Bill of Rights. The plaintiffs claim that the Vermont Department of Health has interpreted this mandate as requiring physicians to inform all terminally ill patients about the availability of AID under Act 39.2 ,3 While Act 39 itself does not require physicians to write a life-ending prescription or otherwise assist in hastening a patient's death, the plaintiffs argue that this mandate imposes an affirmative duty to inform terminally ill patients about this option, and that it therefore violates the constitutional rights of physicians with religious or moral opposition to AID. The plaintiffs asked that the Court enter a declaratory judgment that Act 39 is unconstitutional and requested protection from professional disciplinary action or civil or criminal proceedings for physicians neglecting to comply with this provision. In response, the state filed a motion to dismiss the lawsuit stating that the plaintiff's interpretation of Act 39 was incorrect, and that the law did not in fact stipulate an affirmative duty to inform; at most, the defendants argue, the law requires physicians to respond to patients' requests for information.4 In the meantime, several patients' advocacy organisations, objecting to the state's interpretation, filed a motion to intervene in the lawsuit, which was granted in December 2016. The intervenors concur with the plaintiffs (to whom they are otherwise ideologically opposed) that the law entails an affirmative duty to inform.
How the Vermont lawsuit is resolved will have significant implications for how states that legalise AID accommodate conscientious objection. Worldwide, conscience-based claims in healthcare law have attracted considerable media attention lately as professional organisations and lawmakers continue to debate how far rights of conscientious refusal ought to extend for healthcare providers who wish to abstain from participating in medical procedures incompatible with core moral values. In Canada, for example, professional organisations have challenged requirements that conscientious objectors refer patients requesting AID to a medical professional who will provide the service, on the grounds that such referrals will make conscientious objectors complicit in morally contested practices.5 Yet the ethical questions raised by the Vermont lawsuit stretch beyond rights, and limits, of conscientious refusal. Less obvious, but no less important, are questions concerning those physicians who do support a patient's choice to end their life under AID legislation.
Physicians in any permissive jurisdiction should consider whether, and under what circumstances, there is an ethical obligation to inform terminally ill patients about AID as an end-of-life option. Much of the literature on clinical communication about AID addresses how physicians should respond to patient requests for assisted dying,6–8 and many bioethicists and clinicians operate with the presumption that communication about AID should be patient-initiated.9 But how should physicians handle patients who may not know enough about AID to request it? While physicians may be less likely to encounter patients unfamiliar with AID in places where it has been legal for longer durations, public knowledge can lag considerably behind legislative developments: one survey of Oregon patients conducted 2 years following the implementation of Oregon's Death with Dignity Act found that only 23% of respondents knew that an Oregon physician could legally prescribe life-ending medication.10 Therefore, resolving ethical questions about the physician's duty to inform will be particularly important in newly permissive jurisdictions, in which physicians can be expected to play a substantial role in public education.
In this article, I examine the affirmative duty to inform terminally ill patients about AID in light of ethical concerns about professional responsibilities to patients and the maintenance of the patient–provider relationship. I suggest that we should not take for granted that communication about AID ought to begin with a patient's request, and that there may be circumstances in which physicians have good reasons to introduce the topic themselves. I do not take a definitive position on whether or not there is an affirmative duty to inform; this determination will depend on the clinical context. However, a prima facie case for informing patients about AID might hold: multiple jurisdictions have legalised AID as an end-of-life option, yet providing a choice is only meaningful if people know that it is an option. Physicians may therefore assume some responsibility for informing qualifying patients about AID as a legally authorised option, as part of a comprehensive approach to informed decision-making in end-of-life care.i By identifying ethical considerations that ought to inform such discussions, I aim to set an agenda for future bioethical research that adopts a broader perspective on clinical communication about AID.
Who ought to be informed?
The first question that arises concerns which patients should be informed. The Vermont plaintiffs contend that the affirmative duty to inform implies ‘the medical determination that assisted suicide is indicated for all diagnoses of “terminal” condition’.11 Act 39 defines a terminal condition as ‘an incurable and irreversible disease which would, within reasonable medical judgement, result in death within six months’ [ref. 1, §5281]. However, not all terminally ill patients will be good clinical candidates for US AID laws, which require that patients self-administer the lethal dose of medication.12
Should an affirmative duty to inform about AID apply to patients who are clinically ineligible to receive it? Ethical arguments for withholding clinically inappropriate choices have been made in other areas of medicine. For example, professional guidelines have recommended that cardiopulmonary resuscitation (CPR) be withheld from patients for whom such treatment is judged to be futile (as complex and fraught as such judgements may be).13 ,14 Such actions have been justified on the grounds that offering CPR in such cases may undermine patient autonomy15 or harm surrogates, who may come to feel responsible for a loved one's death.16 Similarly, physicians may determine it inappropriate, and potentially harmful, to inform patients that AID is a legal option if the patient's underlying medical condition will impede her ability to self-administer and/or ingest the medication.
The affirmative duty to inform about AID also carries the presumption that patients want to know about life-ending treatment, which is not likely to be true of all patients. While recent bioethical work has challenged the ethical basis of the ‘right not to know’, patients may nevertheless have a psychological interest in not knowing certain information about their health.17 ,18 Because patients may not want to know that they meet the eligibility requirements for AID—which include, first and foremost, a terminal illness prognosis—physicians should restrict disclosures about AID to patients who have already indicated a willingness to receive information about their prognosis.
Physicians may likewise avoid broaching the topic of AID with patients who have clearly indicated that it does not accord with their moral or religious worldview. Insofar as religiosity has been associated with greater use of life-prolonging care,19 physicians may be more reluctant to discuss death-hastening options with patients who are known to hold certain religious beliefs. Granted, the extent to which a physician may know about a patient's preferences with respect to AID will depend on the nature of the physician–patient relationship: the better a physician knows a patient's religious views, the more reason she may have to avoid a discussion of AID. On the other hand, unfamiliarity with a patient might also foster reluctance to initiate such a discussion due to the controversial nature of the topic. For these reasons, as I discuss further below, informing patients about AID should be approached as part of a broader conversation about patients' values, goals and expectations with respect to end-of-life care.
What are the potential harms and benefits?
Even with patients who meet clinical criteria for AID and have not communicated opposition to it, physicians may hesitate. Physicians may be reluctant to communicate a judgement that a patient is within 6 months of dying because of clinical uncertainties surrounding prognosis and the challenging nature of such conversations.20 ,21 Meanwhile, patients may view the physician's presenting information about their state's AID law as communicating an implicit value judgement or endorsement of this option. Physicians may fear that such a disclosure will signal a loss of hope or abandonment, or result in a patient's mistrust, or deeply offend patients that hold opposing values. Any of these potential consequences could be damaging to the physician–patient relationship at a critical juncture in clinical care. Physicians may likewise worry that simply broaching the topic of AID could constitute undue influence on patients' decisions, a point I return to below.
Waiting for patients to initiate discussions of AID, however, raises justice concerns regarding equal access to information. In Vermont, there is considerable public misunderstanding 3 years after the law passed (eg, confusing AID with active euthanasia). My ongoing ethnographic research on the implementation of Act 39 suggests that many Vermont residents are not well-informed about the labour-intensive bureaucratic process required to use the law. Because patients who already know about the law are likely to be more educated, waiting for patients to initiate a request for AID might create access gaps for patients from less privileged backgrounds. For some, this may seem like good news: data from Oregon indicate that people who use AID are relatively well-off and highly educated, which proponents cite as evidence that Oregon's law is not being abused to coerce vulnerable patients (eg, patients with disabilities or from socioeconomically marginalised groups, women, the elderly) into ending their lives.22 However, such utilisation patterns might also reflect unequal knowledge, and thus unequal access. From this perspective, there may be good reason for physicians to inform terminally ill patients about AID, provided the patients meet certain threshold criteria.
Furthermore, the benefits of receiving information about AID appear to accrue to more patients than those who end up using it. In Oregon and the Netherlands, AID is discussed far more than it is performed. Simply knowing that it is a legal option is comforting to many terminally ill patients, even if they do not decide to act on this knowledge.23 ,24
What information should be included?
Before informing patients about AID, physicians should begin by asking all critically ill patients if they would like to discuss their prognosis. Because AID is only available to patients for whom death is expected within 6 months, a ‘no’ response to this opening question would automatically preclude further discussion of AID. Once patients are aware of their prognosis, information about AID may be offered as part of a broader conversation about patients' values, fears, preferences for care and options for symptom management as they near the end of life.25
At a minimum, information about the availability of AID should include basic information about the legal and clinical requirements of state laws and what the procedure entails. For example, in the USA, physicians should be able to convey that AID laws enable patients to self-administer a lethal dose of a physician-prescribed medication; they do not permit active euthanasia, a common misperception among patients. It is unrealistic to expect that physicians will universally inform patients about the details of various medication regimens—including local availability, cost and potential side effects—because this information is not always known to physicians who have not been directly involved with AID. However, physicians who wish to procure such information for patients can do so relatively easily with the support of advocacy organisations.
Should patients be interested in pursuing AID, informing them about the option is only the first step in a longer series of conversations.8 General guidelines for counselling patients about AID recommend that physicians ask why the patient is interested in pursuing AID, explore the meanings underlying this preference as well as emotional factors and potential coercive influences, assess whether palliative care is adequate, evaluate the patient's decision-making capacity and revise the care plan if the patient's concerns can be addressed through alternative means.26 ,27 Patients and physicians have reported that such conversations often provide an opening to discuss related concerns about dying,6 ,7 which is another benefit of such discussions.
How should information be communicated?
To mitigate the possible harms of informing patients about AID, strategies recommended for initiating referral to palliative care or hospice—such as assessing the patient's understanding of her condition, eliciting her goals for care and responding to emotional cues—may be helpful.28 ,29 Such strategies can protect the physician–patient relationship by ensuring that the physician meets the patient where she is, and that the patient's values will guide the discussion. The use of qualifiers and other contextualising statements (eg, ‘I must inform you that this option exists but I am not recommending that you pursue it’) can help to address concerns that presenting information about AID will imply that the physician supports this option.30
Steps may also be taken to minimise the potential for undue influence when initiating such discussions. In his work on euthanasia policy in the Netherlands, Raphael Cohen-Almagor has argued that a physician's offering AID as an end-of-life option can compromise the voluntariness of a patient's choosing the procedure by signalling that the physician has ‘given up’ [ref. 9, p. 91–101]. My own view is that determinations of undue influence will depend on the clinical and communicative context in which the information is supplied. While I am not suggesting that patients will always be free from undue influence when receiving information about AID, I do think that physicians can diminish this possibility through their communicative approach. First, it is important to distinguish between ‘informing’ patients about AID as a legal end-of-life option, and ‘advising’, ‘suggesting’ or ‘offering’ that patients pursue this option. These words signal distinct speech acts that are sometimes collapsed in Cohen-Almagor's account. Moreover, insofar as medical decision-making can be susceptible to various forms of non-rational but non-coercive influence, such as the inclusion of a default option in advanced directive forms31 or framing therapeutic success rates in terms of mortality versus survival statistics,32 it is important that physicians attend to possible framing effects when informing terminally ill patients about AID. For example, framing AID as an option sought by a very small number of patients can mitigate concerns that informing patients about AID will influence them to choose it by establishing clear social norms around the low utilisation of AID.
Qualifiers, contextualising statements and framing strategies will be particularly important when broaching the topic with vulnerable populations (eg, racial/ethnic minorities, people with disabilities), given bioethical concerns that such populations may be coerced to use AID. Misconceptions about hospice and palliative care as death-hastening have been well documented in the African-American community,33 ,34 while the disability rights community has expressed concerns about AID devaluing and threatening the lives of people with disabilities (via a ‘slippery slope’ expansion of clinical criteria).35 Consequently, it will be important to undertake conversations with these populations with the utmost care and clarify that providing information about AID does not constitute endorsement of this option for a particular patient.
Conclusion
However the Vermont lawsuit is resolved, the one-size-fits-all approach of legislative mandates to disclose health-related information is a blunt tool for ensuring equal and ethical access to such information. New York's Palliative Care Information Act, which, much like Vermont's Palliative Care Bill of Rights, requires physicians to provide terminally ill patients with information and counselling about palliative care and end-of-life options, has been criticised for its potential to reduce a delicate conversation between doctor and patient to a legalistic, checklist-style disclosure.36 Thus, whether or not there is a legal obligation to inform terminally ill Vermont patients about AID, the ‘duty to inform’ may not be the ideal ethical frame for conceptualising the physician's moral responsibilities with respect to clinical communication about AID, which ought to include sensitivity to the communicative context of disclosing such potentially charged information. Put differently, a blanket-style disclosure may not be preferable to eliciting a patient's values, goals and expectations and determining whether AID is an option the patient might want to consider. Of course, eliciting a patient's values regarding end-of-life care is facilitated by advanced training in end-of-life communication, an ideal which is not fully realised in contemporary US healthcare.25 Whether the potential harms of poor communication outweigh the potential benefits of patients receiving such information remains open to further analysis.
While the dominant bioethics discourse on AID has often focused on conscientious objection, legal and ethical debates about how far physicians' rights of conscientious objection ought to extend should not overshadow the broader ethical and practical questions surrounding clinical communication about AID when the physician's conscience aligns with patient choice. If one assumes that clinical communication about AID must always begin with a patient's request, which physicians must then accede or deny, conscientious objection make sense as a dominant conceptual frame. However, if one does not take for granted that clinical communication about AID must be patient-initiated, new ethical questions emerge. Should a physician inform a terminally ill patient about AID, and if so, when and under what circumstances? What clinical, cultural or psychosocial criteria might preclude such discussions? Perhaps most importantly, how should physicians communicate this information in a thoughtful, sensitive and patient-centred manner? By addressing these questions, I have demonstrated that, while considering how to respond to patient requests for AID is a critical first step, the ethical issues in clinical communication about AID extend much further.
With many other states considering legislative proposals, it is likely that AID laws will continue to spread in the USA. Even with national media coverage fostering growing public awareness, physicians will play an important role in educating patients in newly permissive jurisdictions. As the USA moves into the next phase of AID implementation, questions surrounding the physician's duty to inform constitute an untapped frontier for medical ethics.
Acknowledgments
Bernard Lo and Jesse Summers provided very helpful comments on earlier drafts of this article. The authors is also grateful for suggestions from the Greenwall Faculty scholars and alumni, the members of the Bioethics at UNC working group, two anonymous reviewers and JME Editor Dominic Wilkinson.
References
Footnotes
Funding This research was supported by a Greenwall Faculty Scholars Award and a grant from the National Science Foundation (no. 1630010).
Competing interests None declared.
Ethics approval UNC Chapel Hill IRB.
Provenance and peer review Not commissioned; externally peer reviewed.
↵i Some observers may ask whether there can be a duty for physicians to inform patients about state AID laws given that AID is not a standard medical treatment. There are certainly alternatives to physicians serving as conduits for information about AID: advocacy groups have engaged in public education campaigns, and pamphlets and informational brochures might offer viable alternatives. Here, however, I focus on ethical questions facing physicians who accept some obligation to informing patients about AID.
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