Abstract
At the outset of this project I claimed that the charges levelled by some of the critics of healthcare ethics consultants, and consultation, deserve greater attention because our efforts to address them might illuminate aspects of the work that have been neglected in the (I believe, worthwhile) effort to professionalize the field. As a reminder, these charges consist in the various, and somewhat contradictory, claims that the work of practicing healthcare ethicists is: compromised and ineffectual (often framed as a conflict of interest charge), elitist and politicized (which may be implicit in the assertion that the healthcare ethicist imposes her world view on unsuspecting stakeholders), and, finally, incoherent in the context of value pluralism (sometimes expressed as a yearning for frameworks or foundations).
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Notes
- 1.
My focus here remains on healthcare consultation, broadly understood. It is acknowledged that healthcare ethicists also devote a great deal of their professional time to teaching, research, and policy development, but these activities are not generally understood to be controversial in the ways that have been described thus far. Admittedly, this may be a mistake because a PHE can exert great influence through her efforts in each of these areas of practice. I will not dwell on these other possible sources of concern because they are not unique to the PHE’s work, and because these types of work are sufficiently public to allow them to be observed and critiqued by other members of the healthcare and lay communities. The content and outcomes of ethics consultations, on the other hand, are generally known only to participants or to those privy to the content of the confidential patient records or internal documents that contain the consultants’ recommendations.
- 2.
There is a considerable literature on patients in challenging circumstances that latterly referenced the so-called hateful or impossible patient. In addition, in should be acknowledged that PHEs do consult on cases with a view toward helping providers to identify and reinforce boundaries in circumstances where boundary-crossings are likely to occur. Typologies of boundary crossings have been offered in the psychological, professional, and ethical literature. One type involves straightforward conflict of interest scenarios, but others describe relationships that threaten to erode professional boundaries because the patients are seen in some respect as unlike other patients because of the associations, positive or negative, that providers make with them. A patient may, for example, remind a professional of a beloved or despised relative, or remind her of a prior case that was especially rewarding or upsetting. It is reasonable to suppose that PHEs are not immune to these all-too-human challenges, and the development of professional standards could assist the field with this important concern.
- 3.
Andrew Jameton. Nursing Practice: The Ethical Issues. Englewood Cliffs, NJ: Prentice Hall (1984), 6.
- 4.
It should be acknowledged that futility is a controversial concept especially in the critical care context. My aim is not to engage that extensive literature, but to offer an example of a specific type of hard case, and a common and easily recognizable source of moral distress.
- 5.
Uninsured patients might be eligible only for emergency services (that is, those time-sensitive interventions necessary to preserve life and limb). If such patients are unable to bear the costs of other needed treatments, hospital administrators will be obliged to decide whether to absorb these expenses, or to instruct these patients to seek emergent care only when their conditions became critical. A healthcare ethicist may advocate for compassionate access to uninsured services, but there is no guarantee that her organization will accept her recommendation. Moreover, when faced with a specific case she cannot decide by fiat that the service will be provided on a regular schedule—and without cost— to affected patients.
- 6.
I offer these examples because it is becoming clear that research involving artificial intelligence and very large data sets is not easily evaluated by applying the standards that currently govern access to patient information or research on human participants. Similarly, the ambiguous category sometimes called ‘surgical innovation’ covers a large range of novel or experimental procedures attempted in the context of clinical care, many of which present a significant challenge to valid consent. Innovative surgical practices typically are not seen to be subject to the principles that underlie the Tri-Council Policy Statement because these interventions are generally deemed not to be human subjects’ research as it is defined in that document.
- 7.
A social scientist might find it interesting to capture and categorize the various themes that surface in the consultation work of North American PHEs. I have not attempted such an empirical exercise and readily admit that my typology may need to be adjusted should such research yield findings that indicate that these categories require augmentation. I believe, however, that a challenge to my rough and ready typology would not do much damage to the general thrust of my argument.
- 8.
H.L.A. Hart. “Positivism and the Separation of Law and Morals” Harvard Law Review 71.4 (1958): 608.
- 9.
Ibid., 607.
- 10.
John Austin, The Province of Jurisprudence Determined (Library of Ideas ed., 1954) 184–185 quoted in Hart, Ibid., 596.
- 11.
Hart, ibid., 596.
- 12.
Legal theorists fall into a number of theoretical camps and my aim is not to capture the breadth and richness of the debates that attend the various schools of judicial interpretation. I reference the positivist-natural law debate mainly to reference the fact that disagreement about how to proceed in the hardest of penumbral cases need not imply that a practice is not worth pursuing. It is possible to disagree with the holdings of a Supreme Court decision, or the interpretive strategy of a particular judge, or judges, while retaining a firm belief that the judicial process has great value and provides a critically important function in a democratic society.
- 13.
Ibid., 593.
- 14.
Ibid., 614.
- 15.
Ibid.
- 16.
Ibid., 629.
- 17.
For the sake of simplicity I leave aside the complexities that are sometimes associated with determining what a given patient’s best interests consist in.
- 18.
I leave aside the very interesting question of whether the law or institutional policies constitute firm, or relatively porous, boundaries for ethical deliberation. I accept that it is a relevant and fruitful area for exploration, but I am focusing here on ordinary rather than extraordinary consultation cases. Suffice it to say that PHEs occasionally do find it appropriate to point out that some options (for example, the sterilization of a mentally incapable, but sexually active person, upon the request of that person’s LAR) could be legally and professionally perilous whatever the ethical or pragmatic arguments marshalled in support of a particular intervention. The PHE would be remiss in her duties if she were to omit this important fact in her efforts to identify the ethical options available to various stakeholders. An effort to provide relevant context need not include an opinion on the ethical merits or demerits of that context, however.
- 19.
Carter v. Canada (Attorney General), 2015 SCC 5, [2015] 1 S.C.R. 331. Date: 2015 02 06. Online: https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/14637/index.do. Accessed: February 7, 2019.
- 20.
The phrase “conscientious commitment” was coined by Bernard Dickens and Rebecca Cooke to describe a healthcare provider’s desire to overcome barriers to care provision on what they regard as ethical grounds. The subject of their discussion was women’s reproductive health, but the term is equally applicable to the MAID context.
- 21.
As one might anticipate by now, I do not believe that MAID obliges healthcare ethicists to approach their work in a new way. The legal permissibility of MAID, however, has brought ethical questions into greater prominence than they have typically enjoyed in some quarters, and it provides PHEs with an exceptional opportunity to illustrate how they may be helpful in addressing some of the difficult issues that arise both in the delivery of clinical care and in decision-making with respect to institutional priorities and obligations.
- 22.
In Canada only nurse practitioners and physicians are legally eligible to act as MAID assessors and interventionists, however, other healthcare providers including pharmacists, registered nurses, spiritual care providers, and numerous others, have ethical and sometimes new legal or professional responsibilities related to the care of patients who request, or make inquiries with respect to, medical assistance in dying.
- 23.
I use the terms assessors and providers to distinguish two groups of practitioners that are intimately involved with MAID provision in Canada. MAID assessors are responsible for determining (via reference to the criteria set out in the statute) whether specific patients can be deemed eligible for the intervention. MAID providers, also known as interventionists, are those who administer the medications that result in the deaths of consenting, eligible patients. Not all assessors perform MAID interventions, but all who provide the interventions must perform assessments as well.
- 24.
Bill C-14. An Act to amend the Criminal Code and to make related amendments to other Acts (medical assistance in dying) (2016). Assented to June 17, 2016, First Session, Forty- second Parliament, 64–65 Elizabeth II, 2015–2016. Accessed: February 6, 2019. https://www.parl.ca/DocumentViewer/en/42-1/bill/C-14/royal-assent.
- 25.
Some early efforts to operationalize the reasonable foreseeability condition drew on the so-called surprise question sometimes used by palliative care specialists to identify those who are at the end of life and likely in need of their expertise. The question is, in essence, Would I be surprised if this patient died within the next 12 months? I leave aside the debate over the prognostic accuracy of this tool for cancer or other patient populations. My point is that since a recent Ontario Superior Court decision it has become evident that this approach is more restrictive than the courts intended.
- 26.
A.B. v. Canada (Attorney General), 2017, ONSC 3759, page 12. Online: http://eol.law.dal.ca/wp-content/uploads/2017/06/20170619152447518.pdf. Accessed: February 8, 2019.
- 27.
Jody Wilson-Raybould quoted in A.B. v Canada, ibid., p. 6.
- 28.
“New Medical Assistance in Dying Legislation Becomes Law,” Department of Justice Canada, March 17, 2021. https://canada.ca/en/department-justice/news/2021/03/new-medical-assistance-in-dying-legislation-becomes-law.html. Accessed: July 1, 2022.
- 29.
The “grievous and irremediable” criterion which must be met for a patient to be deemed eligible for MAID does not oblige him to accept any or all treatments that may ameliorate his suffering or even cure his medical condition. The patient’s suffering must only be irremediable in the sense that any treatments that may be proposed are unacceptable to him. A patient’s refusal of a therapy, or even a trial of therapy, that his MRP believes to be reasonable can sometimes be very difficult for a healthcare provider to accept.
- 30.
Commenting on the fact that a 2015 poll showed that 75% of palliative care physicians expressed the view that members of their specialty should not be engaged in aid in dying, even if were to become a legal option, Dr. Susan MacDonald, a past president of the Canadian Society of Palliative Care Physicians stated that, “There’s a huge misconception out there that that’s what palliative care is — it’s all about death… No. The great majority of it is about life and living life as best as you possibly can, not just from a physical perspective, but from an emotional and spiritual and psychological perspective...” Source: “Most palliative physicians want no role in assisted death.” Laura Eggertson. Canadian Medical Association Journal 187.6 (2015): 187.6, E177. http://www.cmaj.ca/content/cmaj/187/6/E177.full.pdf. Accessed: February 10, 2019.
- 31.
Admittedly, the physician who initially judged A.B. eligible for MAID expressed a fear that he would be charged with murder but, perhaps surprisingly, this is rarely the reason that practitioners offer (to their colleagues or to ethicists) for harbouring doubts about whether they should participate in MAID assessments or interventions.
- 32.
Sandy Buchman. “Why I Decided to Provide Assisted Dying: It is Truly Patient Centred Care.” British Medical Journal 364 (2019): 1412. https://www.bmj.com/content/364/bmj.l412. Accessed: January 31, 2019.
- 33.
Leonie Herx, Srini Chary, Ed Dubland, David Henderson, Bernard Lapointe, Robin Fainsinger, and Valerie Schulz. “Take off the Rose-Coloured Glasses. A response to Drs Buchman and Blackmer,” British Medical Journal 364 (2019). February 8, 2019. https://www.bmj.com/content/364/bmj.l412/rr-18. Accessed: February 10, 2019.
- 34.
For a description of one hospital’s approach to some of the challenges presented by the legalization of MAID see Madeline Li, Sarah Watt, Marnie Escaf, Michael Gardam, Ann Heesters, Gerald O’Leary, and Gary Rodin. “Medical Assistance in Dying — Implementing a Hospital-Based Program in Canada.” New England Journal of Medicine. 376.21, May 25, 2017.
- 35.
This latter justification, however, is one that likely would not survive careful scrutiny. Although MAID cases present ethical challenges that may be top of consciousness at present, it is not obvious that they are greater than the difficulties faced, for example, in the context of organ donation (where resources are absolutely scarce and patient eligibility requires judgement about a complex inter-relationship between social and medical variables). Despite this fact, I know of no PHEs who are leading, or being considered as operational leads, of multi-organ transplant programs.
- 36.
The Carter decision and the policies of various regulatory colleges have affirmed that conscientious objections to MAID participation must be respected, therefore direct participation in MAID is limited to willing volunteers. Some controversies persist with respect to the meaning of the term ‘participation,’ but this example is not designed to delve into that debate. Rather it is to explore the nature of some of the concerns that have been raised by MAID assessors and providers in the hard cases that they have faced.
- 37.
For a real-life example see: Kelly Grant. “Medically assisted death allows couple married almost 73 years to die together.” The Globe and Mail, 1 April 2018. https://www.theglobeandmail.com/canada/article-medically-assisted-death-allows-couple-married- almost-73-years-to-die/. Accessed: February 11, 2019. In this specific case, one partner was initially assessed as meeting the criteria for MAID but she elected to postpone the intervention, despite her suffering, until her husband’s physical decline was sufficient to render him more clearly eligible for the intervention.
- 38.
The “Vulnerable Persons Standard” was developed by a group of individuals with expertise in ethics, law, medicine, public policy, and disability rights who regard age and frailty, among other conditions, as especially concerning grounds for MAID eligibility. Their view is that “stigma, abuse, coercion, isolation and depression” may drive such requests and every effort should be made to overcome these potentially coercive factors. The standard may be accessed online at: http://www.vps-npv.ca/readthestandard.
On the other hand, the anthropologist Naomi Richards has written about the ageist biases that may motivate refusals to acknowledge the ethical defensibility of rational suicides or requests for aid in dying in the context of what some have called a completed life. See “Old Age Rational Suicide.” Sociology Compass 11:e12456 (207). https://onlinelibrary.wiley.com/doi/epdf/10.1111/soc4.12456. Accessed: 10 February 2019.
- 39.
Francis Kamm, “The Philosopher as Insider and Outsider: How to Advise, Compromise, and Criticize,” Business & Professional Ethics Journal 9.1/2 (1990): 7.
- 40.
Ibid., 8–9.
- 41.
Core Competencies, p. 7.
- 42.
“The Epistemic Costs of Compromise” by Katrien Devolder and Thomas Douglas is a recent article that probes some additional problems with Brock’s defense. The authors note that a failure to articulate the genuine reason, or reasons, for a compromise position may have two serious unintended consequences. The first is that subsequent arguments which draw on the deceptive one may start from premises which are insufficiently justified because of the authority that has been granted to those with acknowledged expertise with the result that each iteration will result in worse compromises or policy positions. The second is that the overall quality of debates in bioethics may become (or be) poorer owing to an unwillingness to engage in the sort of uncensored philosophical debate that gives academic philosophy its rigour. Their proposed solution, to encourage distinct venues for each type of debate however, seems to miss the mark for all of the reasons described in my discussion of Kamm’s duties. A better solution, on my view, would be to promote increased interaction between academic and clinically-based ethicists, and to carefully consider the role-related obligations of each.
- 43.
Kamm, 9.
- 44.
The reference to benchside consultation is a reminder of the fact that PHEs advise researchers on ethical issues related to their various knowledge-generation activities. It is not meant to invoke the activities of the courts despite the fact that I am drawing some insights from the literature that speaks to that domain. I borrow this usage from Cho et al.’s description of their research ethics consultation service.
- 45.
It is not at all obvious that it would be respectful to stakeholders in clinical, organizational, or research ethics consultations for the PHE to withhold (or worse yet, mislead them about) the grounds for her judgements. This would seem to leave her vulnerable to the charge of ethical imperialism that Koch and others levy. Offering reasons which can be openly discussed and accepted, or rejected, on their merits seems appropriately inclusive and it should be acknowledged that the PHE is almost never entrusted with the full weight of decision-making. This generally falls to the parties (be they patients, clinicians, institutional authorities, or scientific investigators) who are the primary stakeholders in the consultation.
- 46.
Ronald M. Dworkin, “Judicial Discretion.” The Journal of Philosophy 60.21 (1963): 637.
- 47.
Ibid., 638.
- 48.
Ronald Dworkin, Taking Rights Seriously, 105.
- 49.
In contrast a Brockian approach, or one which secures consensus by suppressing or denying the PHE’s own position, would appear to substitute strategy for principled argument. If healthcare ethicists are to act as honest brokers, or as sounding boards for those who seek their advice, a strategic approach would seem to be more misleading, or manipulative, than morally neutral.
- 50.
It is important to recognize that one need not be a Dworkinian to accept the claim that the inclusion of principles in judicial reasoning need not imply that those legal arguments are arbitrary or incoherent. For a nuanced argument that comes from the inclusive legal positivist tradition see Wilfrid Waluchow’s book A Common Law Theory of Judicial Review. There, Waluchow argues that judges may be constrained by moral principles provided those principles become part of the law via appropriate mechanisms. An appropriately constituted charter of freedoms or bill of rights may, for example, render certain principles legally binding, and the fact that they need to be interpreted, or weighed, to resolve particular cases in no way undermines their status as legal standards.
- 51.
In all jurisdictions, oncology patients constitute the largest percentage of MAID requestors and, although prediction is always an inexact science owing to individual variables, this population generally allows providers to have greater confidence in prognostication than most others do.
- 52.
Prior to the Supreme Court of Canada’s Morgentaler decision, abortion services legally could be provided only in accredited institutions which had therapeutic abortion committees or TACs (which had a minimum of three members and could not include the physician providing the service) that would decide whether the continuation of the pregnancy might constitute a harm to the requesting woman. The requirement for a TAC to decide on eligibility subordinated women’s preferences for their own care to the opaque and idiosyncratic values of committee members who were not members of their circles of care. This led some members of the Court to conclude that the status quo violated women’s rights to liberty, equality, and security of the person.
- 53.
The Vulnerable Persons’ Standard might be seen as an effort to raise awareness of just such concerns, but our PHE would be remiss if she did not recognize that The Standard was controversial even among those it sought to protect.
- 54.
Even if one were to accept the proposition that it is appropriate to generalize from the characteristics of entire groups in order to make assessments of individuals, the SPP proposal would need to confront the charge that denying access to longer prognosis patients fails the test of non-maleficence because these patients have the potential to suffer much longer than those with short and more predictable prognoses.
- 55.
For a discussion of the influence of the four principles, and especially the principle of autonomy on healthcare ethics, see Soren Holm, “Not Just Autonomy—the Principles of American Biomedical Ethics.” Journal of Medical Ethics (1995) 21:332–338.
- 56.
Legal theorists have had much to say about the relationship between liberty and equality that may be relevant to debates in healthcare ethics. Especially interesting is Ronald Dworkin’s claim that if liberty and equality were to come into conflict equality would have to prevail. See especially “The Place of Liberty,” in Sovereign Virtue (Cambridge: Harvard University Press, 2000), pp. 120–183.
- 57.
Wilfrid Waluchow, A Common Law Theory of Judicial Review, page 162.
- 58.
Ibid., note 55, p. 162.
- 59.
For example, a valid statute—valid because it was enacted in the way that a particular legal system requires—may have content that strikes much of the citizenry as clearly discriminatory (such as a law which explicitly denies same-sex couples the rights and protections enjoyed by those in heterosexual unions), yet it may be impossible for legal officials to deny its existence.
- 60.
Waluchow, ibid., p1.
- 61.
Ibid., 269–270.
- 62.
Although he does not endorse Dworkin’s right answer thesis, Waluchow makes the important observation that the very fact of disagreement and uncertainly about right answers (in law, morality, or in other controversial domains) does not warrant the conclusion that there are no right answers to hard questions. He notes that while there may be no extant evidence that can eliminate all doubt about a specific historical claim, this absence of evidence does not entail the absurd conclusion that there is no truth of the matter at all. Consider, for example, the speculation as to whether Queen Victoria had an intimate relationship with her groomsman John Brown. The fact that the historical record does not provide conclusive evidence to support or refute that claim does not mean that there is no right answer to the this controversial question.
The analogy for practising healthcare ethicists may not be immediately obvious, but it does not seem unreasonable to suggest that they should endeavor to seek the right answers to the hard cases that come before them. The fact that those right answers may be controversial, or that PHEs may engage in theoretical disagreements about how relevant values and precedents are to weighed in light of the facts of a particular case, does not mean that skepticism is the default position one ought to take in response to these challenges.
- 63.
I qualify this claim because some clinical consultations will not be suitable for inclusion in a patient chart. A consultation which consists of a request for help in understanding a professional’s ethical obligations with respect to a particular patient’s requests or demands (such as an insistence on having a provider of a particular race or sexual orientation) may not find its way into the chart. As another example, a patient may refuse entirely to have a PHE involved in her case. If this occurs, the PHE may still assist the clinical team but her involvement will have to be more carefully circumscribed. She can offer non-nominal support by way of a discussion of general principles but she should not view the patient’s chart or become privy to specifics (such as the patient’s name, age, or other identifiers) that violate the patient’s expectation of privacy. Should professionalization of the work of PHEs occur, it will be important to establish practice standards that can render the approach to such cases more consistent and transparent than is currently the norm.
- 64.
Although there is a scant literature that speaks to the elements that should be contained in a ‘chart note’ which serves as a record of a clinical ethics consultation, the documentation practices of practising ethicists are highly variable. PHEs may record the highlights of team and/or family meetings and summarize the concerns that prompted their involvement, as well as the nature of any consensus that may have been achieved, but health records are only appropriate sites for documentation when the consultants’ recommendations are germane to the care of particular patients. Many common issues, such as conflicts within teams, confidential requests for values clarification, or requests for aid in responding to the problematic behaviours of individuals (or the shortcomings of institutional directives) may never find their way into any record that is subject to scrutiny or to quality assurance activity. These limitations are especially salient now that most PHEs no longer keep detailed ethics consultation records. Owing to the legal cautions which advise against retaining so-called shadow charts, ethics services tend to maintain, at most, only non-nominal records, such as databases containing elements such as consultation themes, volumes of requests, and the programs in which they originate. Data of this kind may help a PHE to justify the allocation of her time, or to argue for greater resources, or to target her education efforts, but they are poor surrogates for substantive measures of the quality of the consultations themselves.
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Heesters, A.M. (2022). Ethics as Interpretation: Lessons from Legal Theory. In: How Legal Theory Can Save the Life of Healthcare Ethics. The International Library of Bioethics, vol 101. Springer, Cham. https://doi.org/10.1007/978-3-031-14035-8_4
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