The American Journal of Bioethics, 15(1): 70–76, 2015 Copyright © Taylor & Francis Group, LLC ISSN: 1526-5161 print / 1536-0075 online DOI: 10.1080/15265161.2015.975602
A Risky Recommendation Trevor Bibler, Baylor College of Medicine Courtenay R. Bruce, Baylor College of Medicine and Houston Methodist This case presents a number of challenges and questions for the clinical ethicist, the most salient of which is: “Should Mr. N receive blood products intra-operatively?” In this commentary, we describe a potentially controversial position: The surgeon could perform blood transfusions in order to increase the probability of Mr. N’s survival. In providing this recommendation, we take the approach that the clinical ethicist already agreed to analyze the case and provide a recommendation, so the clinical ethicist should provide one. As part of our reflection, however, we suggest that the clinical ethicist should have never agreed to take this consultation for a variety of reasons that we describe below, most notably the time constraints and barriers to conducting a robust informationgathering process. We argue that a recusal could have preserved the professional integrity of the ethicist, even if there would be political consequences in doing so.
DIFFICULTIES IN ANALYZING THIS CASE As Pena (2015) points out, a number of factors limit the possibility of a robust ethical analysis. First, the cardiologist gives the clinical ethicist a 30-minute time limit. This constrains information-gathering efforts, including the ability to talk with relevant stakeholders. Just from the initial request, the ethicist likely recognizes that this case will involve addressing issues related to refusal of treatment, informed consent, substituted judgment, patient autonomy, and professional integrity—just to name a few. In addition to time constraints, the clinical ethicist will also encounter a number of communication barriers that will likely impact the quality of the ethical analysis. The first barrier is Mr. N’s inability to communicate, as he is under anesthesia—rendering him incapable of discussing his views on blood products with the clinical ethicist. The clinical ethicist has to rely on other sources to gain information regarding the patient’s preferences and values. The available resources include hospital documentation and Mr. N’s wife. The only document that might help the ethicist get a sense of the patient’s preferences is a “statement of refusal” form (SRF). If the ethicist had only this form
(and Mr. N’s stated religious affiliation), then he could more confidently recommend that Mr. N not receive the transfusion. A categorical refusal is a categorical refusal— no exception should be made. At this point, the clinical ethicist could explain to the surgeon that the patient should not be given blood, in order to preserve his spiritual well-being and overall well-being, even if the consequence of preserving spiritual well-being would be the death of the patient’s body. However, using just the SRF as the source of information to conduct a clinical ethics consultation would circumvent legitimate sources of information that could provide additional context and insight into the patient’s values and preferences, which may suggest that the SRF should not be viewed as categorical and conclusive. For instance, it may be the case that Mr. N’s religious beliefs are fluid or inconsistent, or that there is some apparent shortcoming of the SRF that could risk misinterpreting the document (Fagerlin and Schneider 2004; Fowler 1981). Mrs. N, the patient’s wife, is available and able to provide this context, and neglecting her voice would be disregarding the ethicist’s task of “information-gathering” (American Society for Bioethics and Humanities 2011). Thus, Mrs. N might be a useful source of information that could provide a more complete picture of Mr. N and his values and preferences outside of the SRF, but there are pitfalls in communicating with Mrs. N that could potentially compromise the integrity of the informationgathering process and the quality of the consultation. In essence, the clinical ethicist has approximately 15 minutes to have a single conversation with the patient’s spouse, so the tried-and-true method of using open-ended questions as part of the consultation process—which invariably takes time to successfully employ—will likely not generate much information beyond a response to one or two of the clinical ethicist’s questions. Without well-developed and deliberately phrased open-ended questions, the ethicist could unjustly burden the surrogate with responsibility for this decision. The clinical ethicist should also make every effort to make sure Mrs. N is able make a distinction between her interests and the patient’s interests, a task that
Address correspondence to Courtenay R. Bruce, Baylor College of Medicine, Center for Medical Ethics & Health Policy, MS: BCM 420, One Baylor Plaza, Houston, TX 77030, USA. E-mail: [email protected]
could take more than a few minutes. Despite the ethicist’s familiarity with the distinction, he should not assume that this distinction is either intuitive or easily understood (see, e.g., Marks and Arkes 2008). In summary, the clinical ethicist should talk with Mrs. N in order to gain greater insight as to Mr. N’s preferences, but it is difficult to see how such a conversation could meet the clinical ethicist’s multifaceted goals and objectives in that conversation: learning about Mr. N’s Jehovah’s Witness status, the circumstances in which the SRF was completed, and Mr. N’s understanding of the risks of undergoing a “bloodless” heart transplant, at a minimum—all within a single, time-limited conversation.
PROVIDING A RECOMMENDATION DESPITE DIFFICULTIES IN ANALYZING THIS CASE In the previous section, we outlined different logistical challenges that will impact the clinical ethicist’s information-gathering efforts. Here, we recognize that the clinical ethicist already agreed to take the consultation, and we consider whether there is enough information presented in the description of the case—even putting aside the barriers associated with thorough information-gathering efforts— for the clinical ethicist to provide a recommendation. Mrs. N believes that the patient would not want blood products “in most circumstances.” Thus, at least from the perspective of Mrs. N, it seems that Mr. N’s rejection of blood products is general and context dependent, not categorical. Would the possibility of imminent death via exsanguination be one such circumstance? Mrs. N also provides another piece of critical information: “He always knew that I [his wife] would consent to giving blood products if it were a life-threatening situation. It was sort of an implicit agreement or understanding we had.” If the clinical ethicist takes Mrs. N at her word—believing that she is making a surrogate decision that exhibits fidelity between her husband’s wishes and the use of blood products—then it follows that Mr. N would accept a blood transfusion. At this juncture, the testimony of a surrogate decision maker deviates from the static, categorical document. A third important fact is that Mr. N is an inactive, but baptized, Jehovah’s Witness. Although we have little additional information about this transition from active involvement to passive acceptance, this fact supports Mrs. N’s statement that Mr. N would approve of a transfusion in this circumstance. While a practicing Jehovah’s Witness would insist that a blood transfusion violates God’s command, it is possible that someone who has stopped practicing will no longer accept this prohibition. (Of course, the ethicist should not assume that inactivity implies a rejection of the religion’s tenets.) If the clinical ethicist feels Mrs. N is being genuine and honest in her description of the patient’s current theological commitments—and she understands the distinction between a surrogate decision and her own—then her testimony should hold more weight than the SRF as a static
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document. The ethicist should err on the side of trusting the testimony of a surrogate heavily invested in the patient’s well-being. If the ethicist suspects that Mrs. N is being misleading, obtuse, or dishonest (there is nothing in the description to suggest this), then the ethicist could recommend that the SRF guide the patient’s care. In either scenario, the ethicist should work to ensure that the surrogate understands that her task involves showing fidelity to the patient’s wishes and preferences, as opposed to taking responsibility for a life-or-death decision.
WHAT REALLY SHOULD HAVE HAPPENED We contend that the clinical ethicist should not have ever agreed to take the consultation, explicitly recognizing that the need to provide thorough analyses and well-founded recommendations outweighs any obligation to help a clinician-friend (the cardiologist) in need. It is true that doctors, surgeons, and nurses make decisions in real time and that they may expect other services working in the hospital to do the same, but the clinical ethicist should explain how and why this expectation should not be maintained here. Going forward, the clinical ethicist may have to bolster his reputation or the service’s reputation, which may stem from unwarranted negative perceptions associated with this case. One way to balance the professional integrity of the clinical ethicist against the moral distress and angst of the cardiologist (and his team) would be for the clinical ethicist to politely decline providing a recommendation, while still offering an opportunity to debrief for the purpose of alleviating moral distress and developing proactive plans for future cases. If the team transfuses blood, the team members may feel that they have violated the patient’s spiritual well-being. If they allow the patient to exsanguinate, they may feel they have neglected their professional duties. The ethicist could take the opportunity to discuss the legal and ethical permissibility of allowing Jehovah’s Witnesses to choose spiritual integrity over bodily existence. A debriefing would also give the ethicist a venue for discussing policies that could prevent a similar situation from arising again (see discussions in this issue by Pena  and Varisco and Scheinin ). By offering to provide a debriefing session, the clinical ethicist would avoid any feelings of abandonment on behalf of the surgical team, while still preserving the clinical ethicist’s professional obligation to conduct thorough analyses. With the clinical ethicist declining to take the consultation, the distressed cardiologist (and his team) may consider approaching (or actually approach) Mrs. N with leading or insensitive questions that place responsibility for the decision upon Mrs. N, like “Do you want us to transfuse your husband? If we don’t, he will definitely die.” Depending on how she answers the question, Mrs. N may feel responsible for either violating the patient’s spiritual well-being (if she acquiesces) or allowing her husband to die (if she says that her husband would refuse a transfusion). The clinical
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ethicist could mitigate the chances of this occurring by proactively discussing with the cardiologist how these questions and statements could be considered leading and will likely generate misinformation. CONCLUSION Clinical ethicists should not agree to take this type of consultation because it could violate their professional obligations and professional integrity. The time constraints and communication barriers make it nearly impossible for the clinical ethicist to conduct a rich analysis that is well founded in information-gathering details. However, we recognize that the clinical ethicist in this case did agree to take the consultation, and that it would be counterproductive for us to argue the facts. Thus, we suggest that, based on the facts given, it may be ethically appropriate for the clinical ethicist to recommend a blood transfusion, assuming the surrogate is able to distinguish her husband’s preferences rather than her own interests. The ethicist can justify this recommendation by appealing to the surrogate’s intimate knowledge of her husband’s theological commitments and therapeutic preferences over the categorical SRF. On the other hand, if the ethicist has reservations about Mrs. N’s ability to make a substituted judgment, then he
may promote the SRF over Mrs. N’s testimony. Whatever the ethicist’s conclusion—be it affirming, denying, or recusing—the ethicist should (1) help alleviate feelings of guilt Mrs. N may experience, (2) address the surgical team’s moral distress, and, looking forward, (3) work to prevent similar situation from occurring in the future (see Varisco and Scheinin  and Pena ). &
REFERENCES American Society for Bioethics and Humanities. 2011. Core competencies for healthcare ethics consultation, 2nd ed. Glenview IL: American Society for Bioethics and Humanities. Fagerlin A., and C. E. Schneider. 2004. Enough. The failure of the living will. Hastings Center Report 34(2): 30–42. Fowler, J. W. 1981. Stages of faith. New York, NY: HarperOne. Marks, M. A. and H. R. Arkes. 2008. Patient and surrogate Disagreement in end-of-life decisions: Can surrogates accurately predict patients’ preferences? Medical Decision Making 28 (4): 524–31. Pena, A. 2015. Preventing the predictable. American Journal of Bioethics 15(1): 72–74. Varisco J., and S. Scheinin. 2005. Leading medicine through “bloodless” transplantation. American Journal of Bioethics 15(1): 75–76.
Preventing the Predictable Adam Pena, Baylor College of Medicine Health care clinicians often rely upon a clinical ethicist’s expertise to elucidate patient preferences when Jehovah’s Witness (JW) patients refuse blood products or when there is ambiguity about a JW patient’s preferences about these products or other derivatives. While it is an ethical issue that clinical ethicists often face, this case offers a unique challenge: The clinical ethicist has 30 minutes, at most, to complete the consultation before the clinical situation becomes life-threatening for Mr. N. A preventive ethics approach may have averted the ethical conundrum presented in this case. The purpose of this commentary is to explore the benefits and limitations of a preventive ethics framework, but I have no intention of providing a full analysis or offering a recommendation to the cardiologist (for recommendations see Bibler and Bruce 2015). Using a preventive ethics framework, I discuss several steps that the team could have employed to clarify Mr. N’s preferences about blood products or other derivatives early in the transplant evaluation process.
THE CONSULTATIVE PROCESS The American Society for Bioethics and Humanities (ASBH) and the Clinical Ethics Consultation Affairs Standing Committee (CECA) have stressed the importance of a establishing and maintaining a thorough and systematic process for competently conducting an ethics consultation (ASBH 2012). The clinical ethicist is expected to engage in a deliberate process that begins with gathering relevant ethical information, progresses toward initiating contact with relevant stakeholders, and finalizes in ethically sound recommendations (Carrese et al. 2012). Circumventing any of the essential steps of a comprehensive consultative process, even for the sake of time, jeopardizes the quality of the process and the ethical acceptability of the recommendations provided. The surgeon gave the clinical ethicist a 30-minute window to complete the consultation. The emergent nature of the consult, coupled with the risk of exsanguination, limits the clinical ethicist’s ability to identify and to gather all the
Address correspondence to Adam Pena, Baylor College of Medicine, Center for Medical Ethics & Health Policy, One Baylor Plaza, MS: BCM 420, Houston, TX 77030, USA. E-mail: [email protected]
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