How to Retain the Trust of Patients and Families When We Will Not Provide the Treatment They Want

Edmund G. Howe

      How might clinicians best try to retain the trust of patients and family members after clinicians oppose giving a treatment? If clinicians can maintain the trust of patients and families in these situations, this may soften what may be the greatest possible loss—the death of a loved one.

         I discuss what clinicians seeking to retain trust should not do—namely impose their values and reason wrongly—and introduce strategies that clinicians may use to reduce both. I present five principles that clinicians can follow to try to retain trust, with examples that illustrate each. I suggest specific interventions that clinicians can make, especially when they anticipate that a patient and/or family may, in time, want a treatment that is futile.

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A Justifiable Asymmetry

Daniel Brudney and Mark Siegler

      It is a clinician’s cliché that a physician only challenges a patient’s capacity to make a treatment decision if that decision is not what the physician wants. Agreement is proof of decisional capacity; disagreement is proof or at least evidence of capacity’s absence. It is assumed that this asymmetry cannot be justified, that the asymmetry must be a form of physicians’ paternalism. Instead what is at issue when patient and physician disagree are usually two laudable impulses. The first is physicians’ commitment to patients’ well-being: physicians have a professional obligation as well as, ideally, a personal commitment to take care of patients—to do their best to bring about a positive medical outcome. The second impulse is common to much of human life, namely, the urge to find and to understand the source of our disagreements with one another. In this article we argue that, jointly, these impulses justify the asymmetry with regard to examining patients’ capacity.

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On Not Taking “Yes” for an Answer

Alexander M. Capron

         Does the practice of questioning the decision-making capacity of patients who disagree with recommended medical interventions amount to paternalism on the part of physicians who would not have raised questions about competence had these patients accepted the recommendation? Brudney and Siegler provide a nuanced argument why the practice can be both pragmatically and ethically justifiable, particularly if physicians follow a “decision tree” that they recommend for cases where disagreements occur. Nonetheless, the history of this subject shows that bioethicists have long been worried that the “outcome approach” (challenging patient’s capacity because of substantive disagreements with their choices) undermines respect for autonomy, and the more refined version from Brudney and Siegler still creates some further concerns about the resulting inadequacies in communication and comprehension in the physician-patient relationship.

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Moral Reasoning among HEC Members: An Empirical Evaluation of the Relationship of Theory and Practice in Clinical Ethics Consultation

Jason Adam Wasserman, Shannon Lindsey Stevenson, Cassandra Claxton, and Ernest F. Krug, III

         In light of the ongoing development and implementation of core competencies in bioethics, it is important to proceed with a clear sense of how bioethics knowledge is utilized in the functioning of hospital ethics committees (HECs). Without such an understanding, we risk building a costly edifice on a foundation that is ambiguous at best. This article examines the empirical relationship between traditional paradigms of bioethics theory and actual decision making by HEC members using survey data from HEC members. The assumption underlying the standardization of qualifications and corresponding call for increased education of HEC members is that they will base imminent case decisions on inculcated knowledge. Our data suggest, however, that HEC members first decide intuitively and then look for justification, thereby highlighting the need to re-examine the pedagogical processes of ethics education in the process of standardizing and improving competencies. (Nonsubscribers may click here to purchase the full text.)

Reasoning Backwards by Design: Commentary on “Moral Reasoning among HEC Members”

Ashley L. Stephens and Elizabeth Heitman

         Empirical assessment of the practice of clinical ethics is made difficult by the limited standardization of settings, structures, processes, roles, and training for ethics consultation, as well as by whether individual ethics consultants or hospital ethics committees (HECs) provide consultation. Efforts to study the relationship between theory and practice in the work of HECs likewise require the spelling out of assumptions and definition of key variables, based in knowledge of the core concepts of clinical ethics and logistics of clinical consultation. The survey of HEC members reported by Wasserman and colleagues illustrates the difficulty of such research and calls attention to need for studies of real-time, complex decision making to inform conclusions about how theory affects practice.

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Expanding the Use of Continuous Sedation Until Death: Moving Beyond the Last Resort for the Terminally Ill

Samuel H. LiPuma and Joseph P. DeMarco

         As currently practiced, the use of continuous sedation until death (CSD) is controlled by clinicians in a way that may deny patients a key choice in controlling their dying process. Ethical guidelines from the American Medical Association and the American Academy of Pain Medicine describe CSD as a “last resort,” and a position statement from the American Academy of Hospice and Palliative Medicine describe it as “an intervention reserved for extreme situations.” Accordingly, patients must progress to unremitting pain and suffering and reach a last-resort stage before the option to pursue CSD is considered. Alternatively, we present and defend a new guideline in which decisionally capable, terminally ill patients who have a life expectancy of less than six months may request CSD before being subjected to the refractory suffering of a treatment of “last resort.”

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Continuous Sedation Until Death Should Not Be an Option of First Resort

Susan D. McCammon and Nicole M. Piemonte

      Samuel H. LiPuma and Joseph P. DeMarco argue for a positive right to continuous sedation until death (CSD) for any patient with a life expectancy less than six months. They reject any requirement of proportionality. Their proposed guideline makes CSD an option for a decisional adult patient with an appropriate terminal diagnosis regardless of whether suffering (physical or existential) is present. This guideline purports to “empower” the patient with the ability to control the timing and manner of her death. This extends even to the option to “opt out” of the awareness and experience of dying and to avoid suffering altogether, even if one’s symptoms and suffering could be effectively treated.

      We respond first with a critique of their terminology. We then turn to some purely practical considerations of how this guideline might be enacted in the current atmosphere of American hospice and palliative care medicine. We close with a consideration of one philosophical concern that might ground the discussion of risks, benefits, and alternatives necessary for informed consent.

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“Let Me Keep My Dead Husband’s Sperm”: Ethical Issues in Posthumous Reproduction

Nikoletta Panagiotopoulou and Stamatios Karavolos

      The feasibility of posthumous reproduction when the surviving partner is female has brought to light many ethical, moral, social, and legal issues. This review aims to summarize these issues and to assist clinicians who may be faced with such requests. A question list, used for health technologies assessment, was utilized in a question-answer approach as the review methodology. Of the 1,208 publications identified through a comprehensive literature search in biomedical, psychological, and ethical databases, 31 articles included arguments related to one or more questions from the predefined question set. Key stakeholders identified include the deceased, the requesting party, the resultant child, the physician, and society. Key ethical issues relevant to posthumous reproduction include the four traditional pillars of medical ethics—autonomy, beneficence, nonmaleficence, justice—as well as the stakeholders’ rights and sociocultural attitudes. The ethical framework formulated by these issues has been incorporated in a clinical ethics decision-making tool that could prove useful to clinicians and decision makers.

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The Value of Virginity

Christine Mitchell

      Hymen reconstruction surgery is a simple procedure to repair a woman’s hymen, requested by women who, for religious and cultural reasons, believe they must appear to have an intact hymen on their wedding night. Debates surrounding possible ethical justification for the procedure are complex and heated. These articles from the Harvard Ethics Consortium present and explore the case of a young woman who asked a young female physician on call for a referral for the procedure.

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When Bleeding Is Vital: Surgically Ensuring the “Virginal” State

Sohaila Bastami

         A young woman called me to ask for a referral to a physician who provided hymen reconstruction surgery. She had had premarital intercourse and came from a cultural background in which it was very important to “prove virginity” on the wedding night. This article deals with my internal struggle whether or not to provide the referral. I felt that providing it would have made me complicit in supporting gender inequality, as men are not required to “prove virginity” to get married. At the same time, I was concerned about the repercussions of not being able to “prove virginity” would have on the caller. I had no explicit guidance on what to do in such a situation—it was not covered by the professional responsibilities I had as a research assistant.

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A Hymen Epiphany

Farrah Jarral

         The hymen is a structure of the female genitalia that is poorly understood even by many medical professionals. Despite the significant anatomical variation in the hymen and no guarantee that rupture or bleeding will occur at first coitus, it has come to hold major cultural significance around the world as a perceived biological indicator of virginity. The persistence of such myths around the hymen causes real harm, including the increase in so-called revirgination surgical procedures.

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On Hymenoplasty

Mary-Jo DelVecchio Good

         Some traditional cultural practices assure expected wedding night bleeding, to help preserve the honor of all parties.

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Hymen Restoration: “My” Discomfort, “Their” Culture, and Women’s Missing Voice

Sylvie Schuster

      The discourse among medical and scientific communities on hymen restoration is largely missing the voice of women affected. This article calls for a more nuanced reflection on women’s real life experiences and the complexities inherent in the negotiation process about the surgery going beyond “ideologies” and the extremes of rape and threats to life. By taking the clinical experience of a woman who requests restoration surgery before her arranged marriage, this article illuminates the grey zone beyond these extremes and explores an individual woman’s options for making her own choices.

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The Value of Virginity and the Value of the Law: Accommodating Multiculturalism

Pablo de Lora

      Hymenoplasty is a minor surgical procedure requested by women who, for cultural or religious reasons, need to remain a virgin until marriage. In this article I assess whether the public healthcare system of a liberal state should provide it as part of a policy of multicultural accommodation. I conclude that, in order to remain loyal to certain ethical ideals linked to the rule of law, liberal states should give access to hymenoplasty only to women for whom premarital virginity is a precondition for their flourishing within their community and who say they are victims of sexual assault.

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Is Hymenoplasty Anti-Feminist?

Gretchen Heinrichs

      Hymenoplasty is a practice that must be judged from within its cultural confines and not only from outside. It offers women who have grown up within the sexual norms of a Western society the chance to return to their parental culture, with its female-specific virginity expectations. Hymenoplasty allows women to be sexually active prior to marriage, which equalizes the discrepancy between gender norms on premarital sexual experience. Caution is needed when comparing hymenoplasty to female genital mutilation. However, comparing hymenoplasty to other cosmetic genital modification procedures raises unique ethical, social, and medical quandaries that highlight the importance of patient’s autonomy.

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Doctoring the Genitals: Towards Broadening the Meaning of Social Medicine

Richard A. Shweder

         Doctoring the genitals is compatible with a recognizable conception of social medicine. This commentary critically examines the distinction between medical and nonmedical procedures; presents an alternative account of Sohaila Bastami’s personal reaction to the anonymous caller’s request for referral information concerning hymen reconstruction surgery; and makes use of Yelp to simulate the caller’s procedure for locating a helpful practitioner. Yelp is a very useful informational search engine that does not subject its users to a moral examination.

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Legal Briefing: Adult Orphans and the Unbefriended: Making Medical Decisions for Unrepresented Patients without Surrogates

Thaddeus Mason Pope

      This issue’s “Legal Briefing” column covers recent legal developments involving medical decision making for incapacitated patients who have no available legally authorized surrogate decision maker. These individuals are frequently referred to either as “adult orphans” or as “unbefriended,” “isolated,” or “unrepresented” patients. The challenges involved in obtaining consent for medical treatment on behalf of these individuals have been the subject of major policy reports. Indeed, caring for the unbefriended has even been described as the “single greatest category of problems” encountered in bioethics consultation.

      In 2012, JCE published a comprehensive review of the available mechanisms by which to make medical decisions for the unbefriended. The purpose of this “Legal Briefing” is to update the 2012 study. Accordingly, this “Legal Briefing” collects and describes significant legal developments from only the past three years. My basic assessment has not changed. “Existing mechanisms to address the issue of decision making for the unbefriended are scant and not uniform.” Most facilities are “muddling through on an ad hoc basis.” But the situation is not wholly negative. There have been a number of promising new initiatives. I group these developments into the following seven categories:

1.   Increased Attention and Discussion

2.   Prevention through Better Advance Care Planning

3.   Prevention through Expanded Default Surrogate Lists

4.   Statutorily Authorized Intramural Mechanisms

5.   California Litigation Challenging the Team Approach

6.   Public Guardianship

7.   Improving Existing Guardianship Processes

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Letter: Possible Unintended Consequences of Including Equal-Priority Surrogates

Steven Perry and Arvind Venkat

         The authors consider two cases in which family members wanted treatment for a patient that the medical staff believed to be futile, in light of an article by M. O’Brien and A. Fiester, “Who’s at the Table: Moral Obligations to Equal-Priority Surrogates in Clinical Ethics Consultations,” published in The Journal of Clinical Ethics volume 25, number 4, Winter 2014.

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Letter: Response to Perry and Venkat

Autumn Fiester

         The author responds to a letter by Perry and Venkat, “Possible Unintended Consequences of Including Equal-Priority Surrogates,” published in the Summer 2015 issue of The Journal of Clinical Ethics. Fiester describes the process and goals of mediation in bioethics consultation in light of the two cases presented by Perry and Venkat.

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