By Stacey Kusterbeck
Ethics consultants’ recommendations are more than just informed opinions — they must align with relevant literature, professional standards, laws, and policies.1 “There is professional acknowledgment that references play an important role in an ethics consultant’s practice,” says Kelly Turner, MA, a PhD student in the Department of Health Care Ethics at Saint Louis University.
This led Turner and colleagues to wonder: What references are ethics consultants actually using to support their recommendations? And are ethics consultants using the same references? The researchers surveyed 95 ethics consultants and educators about which references they used during clinical ethics consultation and/or education activities.2
Overall, respondents reported using 451 different references. There was little overlap among respondents, particularly for books and scholarly articles. Most (315) references were reported by only one respondent.
Respondents also were asked what topics frequently were encountered during ethics consultations. Four topics were selected by more than half of respondents: appropriateness of treatment, informed consent and decision-making capacity, identifying the appropriate surrogate, and discharge decision-making.
“Unlike the other frequently encountered topics, there is relatively limited scholarly literature on how to approach complex hospital discharge cases in ethics consultation. This finding may indicate that clinical ethics scholarship has not yet caught up to a problem that more practicing ethics consultants are seeing out in the field,” observes Turner.
Respondents were asked if they cited references in their ethics consultation notes. More than half (52.6%) indicated they did so, and 16.8% stated that they never do (30.5% of respondents did not answer this question).
Bioethics literature was the largest category of references reported by respondents, followed by professional society documents (statements or codes of ethics) and laws (such as the surrogate decision-making hierarchy in applicable states). For respondents who reported hospital or health system policies, the most commonly used topics were non-beneficial treatment, do-not-resuscitate/do not attempt resuscitation orders, decision-making for patients with and without capacity, advance directives, and the care of unrepresented patients.
“Ethicists need to strike the right balance with documentation of references in chart notes,” says Turner. Including references in ethics notes can provide justification for recommendations. It also can serve to educate healthcare providers on the ethical decision-making involved with the case. Extensive references might be needed for cases involving issues that are controversial or contentious. On the other hand, adding too many references with extensive detail and conflicting positions likely will confuse anyone reading the ethics notes. “It may prevent a chart note from conveying clear recommendations,” says Turner.
Notably, there was extensive variation in the references used by respondents, even for the same topic. In some cases, ethicists identified different references for the same topic that made the same point. This was the case for surrogate decision-making standards, with ethicists reporting different bioethics textbooks as references. “That may mean that we don’t agree as a field on the most important or essential references for a given topic,” says Turner.
In other cases, ethicists used different references for the same topic, which reflected an actual disagreement between the ethicists about the best way forward. This was the case for the topic of potentially inappropriate treatment. “Interestingly, two of the most frequently cited references in our study are professional society statements on this very topic,” notes Turner.
These two statements provide different definitions of potentially inappropriate treatment.3,4 Therefore, the references can be used to support different recommendations about whether it is ethically supportable to withhold or withdraw life-sustaining treatment in a given case. “If an ethicist is making a recommendation about one of these cases, documenting either statement serves the important functions of clearly tracing their particular position on the topic, and conferring legitimacy via professional society consensus,” Turner explains.
Ethicists’ use of conflicting references illustrates that in the field of clinical ethics, there are not always clear-cut “right” or “wrong” answers. “Most clinical ethicists would acknowledge that there are some topics where we do generally have professional ethical consensus,” says Turner. Deviation from these generally accepted points of consensus would raise ethical concerns. For example, in pediatric decision-making, an accepted point of consensus is that parents cannot refuse imminently lifesaving medical treatment for their sick child. Another example would be that patients with decision-making capacity have a right to refuse life-sustaining treatment if they determine it to be excessively burdensome.
However, in most cases, there can be reasonable disagreement between ethicists based on differing values, assumptions, or method of moral analysis. One example is the moral permissibility of donation after circulatory death using normothermic regional perfusion. “This is a highly polarizing topic in clinical ethics right now, with prominent scholars and institutions found on both sides,” says Turner.
If ethicists make conflicting recommendations on a given case for any reason, the ethicists presumably would use different references to support those recommendations. “This is not necessarily an ethical concern — provided that, as ethics consultants, we are being transparent about the sources of our disagreement,” says Turner.
Documenting references becomes particularly important in cases where there are divergent views in the ethics field. Cited references provide a means of carefully tracking the source of disagreements. “Whatever argument an ethicist makes, references are a way to transparently justify that argument,” says
Turner.
- American Society for Bioethics and Humanities. Core Competencies for Healthcare Ethics Consultation (2nd ed). American Society for Bioethics and Humanities; 2011.
- Turner K, Brummett A, Salter E. On what grounds? A pilot study of references used in clinical ethics consultation and education. HEC Forum 2024; May 31. doi: 10.1007/s10730-024-09532-7. [Online ahead of print].
- Bosslet GT, Pope TM, Rubenfeld GD, et al. An official ATS/AACN/ACCP/ESICM/SCCM policy statement: Responding to requests for potentially inappropriate treatments in intensive care units. Am J Respir Crit Care Med 2015;191:1318-1330.
- Kon AA, Shepard EK, Sederstrom NO, et al. Defining futile and potentially inappropriate interventions: A policy statement from the Society of Critical Care Medicine Ethics Committee. Crit Care Med 2016;44:1769-1774.
