Abstract
Those seeking to understand what practising healthcare ethicists do, or may reasonably be expected to do, might fruitfully begin their enquiries by reviewing employment advertisements or by reviewing the role descriptions that have been developed by practitioners in order to clarify the character and scope of their work. The nature of the practice will vary somewhat depending on institutional context: an ethics consultant working in a mental health facility may find herself employing slightly different skills, knowledge, or expertise than her colleague across town at a children’s hospital but, for the most part, their daily tasks will be much the same. As the literature on professionalization reveals, the work of the PHE generally falls within four broad categories: healthcare ethics consultation (which responds to requests for assistance in resolving value conflicts arising in the care of patients), organizational ethics support (which includes policy development and review as well as assistance with one-off decisions which do not pertain specifically to the care of individual patients), supplying education to staff and others on ethical topics, and conducting and evaluating research. It is the first of these that has attracted the most attention and controversy, although it can convincingly be argued that these are not entirely separable domains. Practising healthcare ethicists generally find fodder for their educational efforts, and inspiration for their research, in the cases that come before them. Similarly, policy development is almost always motivated by a desire to address clinical or organizational gaps, and rarely can be useful if it is uninformed by research and unaccompanied by an appropriate educational plan. The policies of healthcare institutions cover incredibly wide-ranging topics such as organ donation after cardio-circulatory death, disclosure of medical error, and the appropriate management of relationships with pharmaceutical industry representatives. They are rarely authored by healthcare ethicists alone (indeed, it is routine for representatives of a dozen or more professional practice areas to have a hand in their writing), and they nearly always undergo multiple layers of committee review, but a PHE often can exert a tremendous influence with respect to the content and disposition of the final product. Even the most independent chief executive officer, or confident medical advisory committee, may be reluctant to grant approval to a policy or guidance document that has been described as ethically deficient by the institution’s own healthcare ethicist or ethics consultation service.
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Notes
- 1.
For this purpose, the label ‘research’ refers to investigations into topics that have ethical dimensions, such as whether it is ever permissible for minor children to donate solid organs to family members. Healthcare ethics consultants may engage in research that is empirical or conceptual in nature in their efforts to contribute to their field, and their approaches to these questions will depend largely on the disciplinary training they received prior to entering the field or the colleagues with whom they collaborate. Both types of research are familiar and legitimate for healthcare ethicists to pursue. I distinguish these activities, however, from another common responsibility of the PHE; that is, the research review and evaluation that she may perform as a member of a Research Ethics Board (REB) or an Institutional Review Board (IRB). I would concede the point that research review can raise complex questions but when it does so I would argue that the activity that ensues might better be categorized as research ethics consultation rather than research ethics review.
- 2.
Sally Bean has made a compelling argument for the existence of composite consultation cases that straddle the distinctions that are typically drawn between clinical, organizational, and research ethics. As many practising healthcare ethicists can attest, a case concerning the appropriate limits of patient care may prompt reflections on the adequacy or defensibility of organizational policy, or may raise concerns about the permeable membrane that separates innovative therapy from research. The implications of Bean’s “hybrid taxonomy” go beyond the challenge to adequately log and report what PHEs do.
- 3.
Most Canadian and American PHEs agree that it is important to preface ethics consultations with a limited assurance of confidentiality. It is typical for healthcare ethicists to remind requestors and participants that, although confidentiality is important and will be respected whenever possible, they will observe legal reporting requirements such as the obligation to report suspected child abuse or a credible threat of suicide or homicide.
- 4.
The recent spate of articles on credentialing PHEs is an important development for the field and it is in many cases motivated by the concerns that drove the earlier debate; that is, worries that the recommendations of an inadequately trained consultant could have grave consequences for those who are her clients. Attention directed toward finding ways to measure the skills, knowledge, and attributes of competent consultants (the term ‘attributes’ replaces the older, perhaps more familiar, language of character traits) is very different from earlier discussions which challenged the very presence of these “strangers at the bedside” to invoke David Rothman’s memorable phrase. My point is not that the credentialing debate is wrong-headed. It is simply that these important earlier questions remain largely unanswered.
- 5.
Core Competencies for Healthcare Ethics Consultation, 2nd edition, page 57.
- 6.
Ibid., 2.
- 7.
Ibid., 6.
- 8.
The term “attribute” may generate some puzzlement here. It, along with “attitude” and “behavior,” appears in the second edition of the Core Competencies as a replacement or placeholder for character. The substitution reflects the authors’ desire to avoid the implication that these traits cannot be taught or evaluated. Indeed, the acquisition and cultivation of the attributes they describe as connected to the skillful performance of the PHE’s role are described as the work of a lifetime. These attributes, attitudes, and behaviours are as follows: tolerance, patience, and compassion; honesty, forthrightness and self-knowledge; courage; prudence and humility; leadership and integrity. Ibid., 32–33.
- 9.
Ibid., 7.
- 10.
In some cases the identification of relevant decision-makers may generate uncertainty or constitute an ethical challenge of its own. If, for example, if it is anticipated that a patient’s treatment preferences might be overridden owing to a family member’s disapproval it may be problematic to include that relative at specific points in the decision-making process even though he has a strong interest in the patient’s decisions. These cases arise with some regularity in clinical settings even though it is generally advisable to engage family members at some stages in the decision-making process. A PHE may recommend a step-wise process for engaging those with moral standing. A patient may need to be engaged in a private and supportive setting in order to devise a strategy to bolster his ability to choose on his own behalf when those closest to him have strong preferences that differ from his own.
- 11.
Ibid., 3.
- 12.
Core Competencies, p. 7.
- 13.
I use the MRP designation quite purposefully because, increasingly, the professional who has the ultimate professional responsibility for a case may be either a nurse practitioner or a physician. This description is appropriate to either case.
- 14.
The steps involved in ethics facilitation are succinctly set out in the Core Competencies report, pp. 7–9.
- 15.
The features they share, and which arise almost routinely in consultation cases originating in settings as different as critical care units and geriatric psychiatry units, are conflicting perspectives concerning quality of life and disputes about who has (or ought to have) the authority to decide when that quality is so poor as to allow or require withdrawal of life-sustaining treatment. To complicate the matter further, life-sustaining treatment may involve the prolonged use of scarce resources like beds in intensive care units or entail the placement of ubiquitous and inexpensive equipment like percutaneous endogastric feeding tubes.
- 16.
Carl Elliott. “Pharma Buys a Conscience, “The American Prospect. 12.17 (2001): 16–20
- 17.
Carl Elliott, White Coat, Black Hats: Adventures on the Dark Side of Medicine, (Boston, MA: Beacon Press, 2010), 144.
- 18.
Mobility devices (like walkers or wheelchairs) physical rehabilitation sessions, home modifications, or personal care services, may not be funded adequately, or at all, by provincial insurance plans. This means that the least well-off can find themselves obliged to accept institutionalization in cases where others with similar injuries or disabilities can expect to return to their own homes with adequate supports in place.
- 19.
François Baylis, “The Olivieri Debacle: Where Were the Heroes of Bioethics?” J Med Ethics 2004; 30: 45.
- 20.
Ibid., 44–9.
- 21.
Ibid., 45.
- 22.
Kuczewski, Mark G. “Reconceiving the Family: The Process of Consent in Medical Decisionmaking.” The Hastings Center Report, March–April 1996.
- 23.
Online: https://www.hhs.gov/ohrp/sites/default/files/the-belmont-report-. Accessed: 2 June 2019.
- 24.
The main point here is that institutional approval differs from research ethics board approval. In the Canadian regulatory environment an institution cannot give its blessing to a study that has been rejected as unethical by its own duly-constituted REB. The converse, however, does not obtain. This is part of a commitment to ensuring that the ethical review of research takes place at arm’s length from administrative pressures to promote research within a healthcare organization.
- 25.
Miriam Shuchman. The Drug Trial (Toronto: Random House Canada, 2005), 274. See also page 25 of The Olivieri Report commissioned by the Canadian Association of University Teachers, p. 25, which distinguishes between two inappropriate confidentiality clauses contained in contracts by Olivieri and Apotex. One was for consulting and the other pertained to the reporting of trial results. Jon Thompson, Patricia Baird, and Jocelyn Downie. The Olivieri Report: The Complete Text of the Report of the Independent Inquiry Commissioned by the Canadian Association of University Teachers. Toronto: J Lorimer, 2011
- 26.
Ibid.
- 27.
Obtained from Apotex’s own website: http://www.apotex.com/ca/en/about/default.asp. on 8 January 2018.
- 28.
There were relevant precedents and standards to be consulted in the research ethics literature in the late nineties, but since that time any residual questions related to consent and disclosure have been regarded as settled. TCPS2, released by the Canadian Tri-Council Agencies in 2010, speaks directly to researchers’ obligations to ensure that the consent of participants continues to be valid throughout the lifespan of a project. This means that changes in a trial protocol, or information that may reasonably be thought to affect a participant’s willingness to consent, must be disclosed to those participants promptly. Article 3.3 of TCPS2 unambiguously states that, “researchers shall disclose changes to the risks or potential benefits of the research. This gives participants the opportunity to reconsider the basis for their consent in light of the new information.”
Earlier versions of the TCPS were less explicit than this current formulation, but even then these principles were not unknown to those immersed in the worlds of research and research ethics. The Declaration of Helsinki recognized the right of participants to withdraw from research without penalty as early as 1964, and the Tuskegee syphilis study (conducted by the United States’ Public Health Service between 1932 and 1972) has been universally condemned for withholding vital information from the service-members (as well as their sexual partners) enrolled in that long-running clinical trial.
- 29.
Miriam Shuchman, The Drug Trial (Toronto: Random House Canada, 2005), 158.
- 30.
A lack of efficacy is concerning because it may leave participants who are suffering from serious diseases reliant for too long on unproven agents when established therapies remain available to them. In this case, for example, there was an effective treatment for iron overload but many patients found the frequent injections it entailed to be so distasteful that they often failed to follow their treatment regimens. Because the ultimate cost of frequent treatment non-adherence was death, the prospect of losing access to L1 was catastrophic for those who were responding well to the study agent. Establishing rules about when a trial should be halted early is a complex matter and can be ethically controversial. It is important to note, however, that these rules should be agreed upon before a trial begins and communicated in lay language to potential participants. In addition, the body that conducts interim analyses of study data (the Data Safety Monitoring Board or DSMB), and decides which events are to trigger trial cessation, should not have any direct involvement with the study. For a brief overview of the topic see Stephen A. Cannistra, “The Ethics of Early Stopping Rules: Who is Protecting Whom?” Journal of Clinical Oncology, May 1, 2002, vol. 22, no. 9, 1542–1545
- 31.
Interactions between journal publishers, prescribers, and patients are also discussed in an extensive and growing literature, but that it not my present concern.
- 32.
Shuchman, ibid., 30.
- 33.
Stanley G. Korenman. Teaching the Responsible Conduct of Research in Humans, Chapter 4. Conflicts of Interest (COI) – Definitions. Online: http://ori.hhs.gov/education/products/ucla/chapter4/default.htm. Accessed: July 10, 2015.
- 34.
Mary Rowell, “The Olivieri debacle: where were the heroes of bioethics? A Reply.” J Med Ethics 30.1 (2004): 50.
- 35.
ASBH, Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants (2014), http://asbh.org/uploads/publications/ASBH%20Code%20of%20Ethics.pdf.
- 36.
Michael Davis and Andrew Stark, Conflict of Interest in the Professions, Oxford University Press, 2001 at p. 8.
- 37.
Ibid.
- 38.
Ibid.
- 39.
The portrayal of this case is often simplified to such an extent that ethically salient features of the situation are omitted. For example, Olivieri was in possession of local data concerning the effects of the study agent on the participants she enrolled, but it is less than certain that she had access to reliable information about overall trends with respect to L1. In large multi-center trials it is sometimes the case that pooled data, or longer-term data, will not support local findings. I do not mean to suggest that disclosure of preliminary findings is never warranted, or that it was unwarranted in this case. My observation instead is designed to highlight the need for judgement by multiple parties in cases where the significance of interim results is uncertain. The Drug Trial by Miriam Shuchman is one source that retains the complexity that makes this case ethically compelling.
- 40.
Healthcare institutions might dispense with PHEs altogether and leave all complex ethical judgements to the consciences of their administrators or the various professionals involved in specific cases. Alternatively, they might engage external ethics consultants to perform this work instead. Unfortunately, other healthcare ethicists, including self-employed ethicists (those who work in university departments, and those affiliated with free-standing bioethics institutes) may face challenges to independence as great, or even greater, than those who are located within a health system hierarchy. This topic is deserving of a lengthier treatment than is possible here but it is important to recognize that concern about ‘ethics for hire’ has generated significant debate and many commentators quite rightly have worried about the ways that compensation can influence outcomes.
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Heesters, A.M. (2022). A Compromised and Ineffectual Field?. 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_1
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