Transgender women's perspectives on mental health care related to vaginoplasty for gender affirmation.

PURPOSE: This study aimed to describe patient experiences and attitudes about the role of the mental health professional as it relates to pursuing gender affirmation surgery. METHODS: This was a mixed-models study with semi-structured interviews. Participants who presented for gender affirming vaginoplasty and had completed pre-surgical requirements but had not yet had the procedure were invited to participate in the study. Semi-structured phone interviews were conducted from November 2019 and December 2020 until saturation of themes was achieved at a sample size of 14. Interviews were then transcribed verbatim and coded by theme. Qualitative analysis was performed using a grounded theory approach. RESULTS: Almost half of the patients did not identify any barriers to obtaining mental health care, but a majority brought up concerns for less advantaged peers, with less access to resources. Some patients also felt that there was benefit to be obtained from the mental health care required before going through with surgery, while others felt the requirements were discriminatory. Finally, a large proportion of our participants reported concerns with the role of mental health care and the requirements set forth by the World Professional Association for Transgender Health (WPATH), and patients gave suggestions for future improvements including decreasing barriers to care while rethinking how guidelines impact patients. CONCLUSION: There are many competing goals to balance when it comes to the guidelines for gender affirmation surgery, and patients had differing and complex relationships with mental health care and the pre-surgical process.

Reimagining Thriving Ethics Programs without Ethics Committees.

With the increasing professionalization of clinical ethics, some hospitals and health systems utilize both ethics committees and professional clinical ethicists to address their ethics needs. Drawing upon historical critiques of ethics committees and their own experiences, the authors argue that, in ethics programs with one or more professional clinical ethicists, ethics committees should be dissolved when they fail to meet minimum standards of effectiveness. The authors outline several criteria for assessing effectiveness, describe the benefits of a model that places primary responsibility for ethics work with professional clinical ethicists-the PCE-primary model, and offer suggestions for alternative ethics program structures that empower healthcare professionals to contribute to ethics work in ways more tailored to their strengths and skills while minimizing the shortcomings of ethics committees.

The Ethics Resource Caregiver Program: Equipping Nurses as Ethics Champions.

AbstractBackground: Nurses face ethical issues and experience moral distress in their everyday work. A nursing ethics champion program was developed at a hospital in the United States. METHODS: As part of a quality improvement project, pre- and post-training surveys were developed to assess whether the program was feasible and sustainable, enhanced nurse confidence in recognizing and addressing ethical issues and moral distress, and increased nurse knowledge of institutional resources for addressing the same. Qualitative and quantitative analyses were performed. RESULTS: Thirteen nurses from both the critical care and medical/surgical settings participated in the program. The program proved feasible. Attrition after the educational sessions raised concerns about sustainability. Survey results suggest an association between participating in the program's educational sessions and increased nurse confidence in recognizing and addressing ethical issues and moral distress, as well as identifying institutional resources that can assist nurses with the same. DISCUSSION: Opportunities for future nursing ethics champion programs include increasing the interactivity and duration of educational sessions, making programs multidisciplinary, and creating materials for nurses to more easily share with colleagues. It would be valuable for future research to measure the impact of nursing ethics champion programs on nursing turnover. IMPLICATIONS: A nursing ethics champion program has the potential to help nurses feel better equipped to navigate ethical issues and moral distress in their everyday work.

Propelling Clinical Ethics Forward: Insights from the 2022 Unconference.

Propelling Clinical Ethics Forward: A Working Unconference was held from 28-29 April 2022 in Atlanta, Georgia. The event, the third installment in an ongoing series of Clinical Ethics Unconferences, brought together 77 individuals from 40 institutions to exchange innovative practices and collaborate to address issues facing the field of clinical ethics. In this article the authors highlight the five major themes that emerged from the 2022 Unconference, including: (1) tackling new and old problems in clinical ethics practice; (2) evolving models of clinical ethics structure and delivery; (3) defining the scope of clinical ethics work; (4) addressing racism, ableism, and underrepresentation in clinical ethics work; and (5) collecting and utilizing data effectively. The authors also reflect on what was learned from the first three Unconferences and offer suggestions for future Unconferences.

Clinician and Ethicist Perspectives: Understanding Moral Distress in Gender-Affirming Care for Pediatric Patients.

Using case examples and other common scenarios, the authors outline several types of moral distress that clinicians may experience when providing pediatric gender-affirming care. The authors also offer strategies for managing moral distress and issue a call to action for professional organizations to enhance support for gender-affirming clinicians.

Developing a Standardized Ethics Consultation Note Template Based on the Formatting Preferences of Stakeholders.

Effective documentation is considered a core competency for clinical ethics consultation. Ethics consultants within the Cleveland Clinic in Cleveland, Ohio, observed variation in the formatting of ethics chart notes across consultants and realized that this formatting was based on their own views of effectiveness. To minimize variation and optimize the readability and understandability of ethics chart notes for end users, a team undertook a quality improvement project to assess the formatting preferences of healthcare professionals who rely on ethics consultation notes. The team developed three sample templates and conducted interviews with stakeholders to understand their preferences. A single standardized template was developed based on the preferences that emerged, which all consultants on the ethics consultation service then utilized. In the first five months of implementation, the percentage of end user respondents marking the highest Likert scale option on a post-consultation survey regarding whether the ethics consultation service provided helpful documentation increased from 60 percent to 72 percent compared to the same five-month period in the year prior.

Improving Real-World Innovation and Problem Solving in Clinical Ethics: Insights from the First Clinical Ethics Un-Conference.

Despite an abundance of academic conferences, clinical ethicists lacked a forum to share innovative practices with peers and to generate solutions to common challenges. Organizers of the first Clinical Ethics Un-Conference developed a working event centered on active participation and problem solving through peer learning, with the goal of improving real-world practice. Registrants included 95 individuals from 64 institutions. Attendees were surveyed immediately after the Un-Conference, and again eight months later. After eight months, 85 percent (n = 33/39) of the survey respondents reported that they found the event "highly impactful" or "somewhat impactful" to their clinical practice, and 23 attendees reported that they had implemented ideas or projects inspired by the event. Three sets of best practice guidelines and four white papers were published from the event. As the field of clinical ethics continues to advance and evolve, this working event format offers an innovative, disruptive alternative to a traditional conference format and may serve as a model for future efforts aimed at improving real-world clinical ethics practice.

Incorporating Stakeholder Perspectives on Scarce Resource Allocation: Lessons Learned from Policymaking in a Time of Crisis.

The coronavirus disease (COVID-19) crisis provoked an organizational ethics dilemma: how to develop ethical pandemic policy while upholding our organizational mission to deliver relationship- and patient-centered care. Tasked with producing a recommendation about whether healthcare workers and essential personnel should receive priority access to limited medical resources during the pandemic, the bioethics department and survey and interview methodologists at our institution implemented a deliberative approach that included the perspectives of healthcare professionals and patient stakeholders in the policy development process. Involving the community more, not less, during a crisis required balancing the need to act quickly to garner stakeholder perspectives, uncertainty about the extent and duration of the pandemic, and disagreement among ethicists about the most ethically supportable way to allocate scarce resources. This article explains the process undertaken to garner stakeholder input as it relates to organizational ethics, recounts the stakeholder perspectives shared and how they informed the triage policy developed, and offers suggestions for how other organizations may integrate stakeholder involvement in ethical decision-making as well as directions for future research and public health work.

A Working Un-Conference to Advance Innovations Among Clinical Ethics Programs.

In an effort to create new synergies to fill gaps in evaluation of value, assessment of quality, and definition of roles in clinical ethics programs we convened a meeting entitled Innovations in Clinical Ethics: A Working Un-Conference (the Un-Conference) in August 2018. The Un-Conference was conceived to be a working event aimed at promoting cross pollination and idea generation for innovative practices in clinical ethics. The event was attended by 95 individuals from 62 institutions, representing a wide diversity of healthcare systems, who believed in the concept and brought their enthusiasm and expertise to share with others. As a product of the Un-Conference, whitepaper groups developed summaries and broad overviews of areas that need to be further addressed within our field. The whitepapers are being published in this issue of The Journal of Clinical Ethics. The first three whitepapers highlight the broad themes of demonstrating value to the institution, quality assessment, and emerging roles for clinical ethics programs and ethicists. The final whitepaper offers guidance to clinical ethicists engaged in pediatric ethics work and, in conversation with the emerging roles article, thoughtfully reflects on the role of pediatric ethicists.

The Role of the Ethicist in an Interdisciplinary Transgender Health Care Team.

Unique ethical issues arise in the provision of gender-affirming care to transgender and gender diverse people. One of the distinctive trends in transgender health care has been the development of interdisciplinary specialty teams with expertise in gender-affirming care. Clinical ethicists can play an important role on these teams in helping gender variant patients and gender-affirming providers navigate complex ethical issues, creating opportunities for enhancing patient experience, and easing provider moral uncertainty. Many opportunities exist for clinical ethicists to lend their skills to this area of clinical care. It is important for interdisciplinary transgender health care teams and other health care professionals providing transgender-specific care to understand the ethical issues involved in such care, the ways in which ethics expertise can be a resource, and the benefits and drawbacks of integrating a clinical ethicist into their team.

Framing the diagnosis and treatment of absolute uterine factor infertility: Insights from in-depth interviews with uterus transplant trial participants.

BACKGROUND: Despite procedural innovations and increasing numbers of uterus transplant attempts worldwide, the perspectives of uterus transplant (UTx) trial participants are lacking. METHODS: We conducted a mixed-methods study with women with absolute uterine factor infertility (AUFI). Participants included women who had previously contacted the Cleveland Clinic regarding the Uterine Transplant Trial and met the initial eligibility criteria for participation. In-depth interviews were conducted in conjunction with FertiQoL, a validated and widely used tool to measure the impact of infertility on the quality of life of infertility patients. RESULTS: All (n = 19) rated their overall health as good; some experienced grief and social isolation. AUFI is a life-framing experience that influences acceptance by family, partners, peers, and one's self. UTx is a means to gain control of reproductive autonomy. UTx allows family-building and the ability to play an active role in prenatal health and well-being. Establishing and maintaining a supportive relationship is a key issue of AUFI and when considering UTx. Risks of UTx are perceived relative to risks to self/child/family posed by adoption/surrogacy. Participants had no overall preference regarding living or deceased donor. CONCLUSIONS: The ways in which women with AUFI conceptualize this condition in their lives and choices around UTx and participating in a study of the procedure are multifaceted and textured. These perspectives are critical to understanding its ethical, legal, and social implications.

When a Child Needs a Transplant but Lacks Familial Social Support.

We present the case of a 19-month-old boy with complex congenital heart disease. His single father is skeptical of traditional medicine and does not offer the social support needed to make heart transplantation successful for his son. After the father demonstrates commitment to transplant success and provides enhanced social support, doctors place the child on a Berlin Heart (a biventricular assist device) as a bridge to transplantation and list him for transplant. When the child is matched to a donor heart, the father refuses transplantation, despite that it is the child's only chance for survival. His doctors report the case to child protective services, but they decline to take protective custody. The father then changes his mind and asks that the child be put back on the waiting list for transplant. By this time, the social supports the father implemented are no longer in place. This case raises a number of issues. First, should courts order heart transplantation when doctors believe that it is in the child's best interest and parents do not consent? Second, once parents refuse a transplant, can they change their minds? Third, if there are uncertainties regarding whether the child has the social support to make transplantation successful, should the child be relisted? Finally, should a child who is not currently a transplant candidate but who may become one in the future be supported with ventricular assist devices?

Decision-Making for an Incapacitated Pregnant Patient.

Decisions about continuing or terminating a pregnancy touch on profound, individualized questions about bodily integrity, reproductive autonomy, deeply held values regarding one's capacity for parenthood, and, in the case of a high-risk pregnancy, the risks one is willing to take to have a baby. So far as possible, reproductive decisions are made between a patient, in some cases her partner, and her medical provider. However, this standard framework cannot be applied if the patient lacks decision-making capacity. In this essay, we discuss one such case that came before our clinical ethics team. We describe the challenges of respecting a patient's reproductive preferences when the patient cannot share what those preferences are, and we argue that decisions regarding reproductive health care should not be treated with exceptionalism. Rather, they should proceed under the normal processes of surrogate decision-making, including the application of substituted judgment. This approach enables us to take the patient's values into account when considering the questions implicated in reproductive health care, just as we do for other kinds of health care decisions in which a patient's deeply held values are salient.

Implications of Ohio's 20-Week Abortion Ban on Prenatal Patients and the Assessment of Fetal Anomalies.

Ohio's governor recently signed into law Senate Bill 127, a bill that makes it a fourth-degree felony for a health care provider to perform an abortion "when the probable post-fertilization age of the unborn child is 20 weeks or greater," joining a series of other states that have enacted such legislation or are moving toward similar legislation. Twenty-week bans have salient implications for women's health, quality of care, and access to services, particularly in the context of the delivery of prenatal care. Because of the timeline of the initiation of prenatal care and assessments of fetal genetic and anatomic anomalies, patients may increasingly find themselves at or near the 20-week postfertilization gestational threshold when they have insufficient information to decide about continuing or ending the pregnancy. This law thus leaves women and families with limited time to obtain a genetic or anatomic diagnosis, restricts access to abortion care at a crucial decision-making time in the pregnancy, and has significant implications for the patient-physician relationship. This law also has ramifications for women and health care providers outside of Ohio, because patients who have made the choice to end a pregnancy will have to cross state lines for abortion care. It is important for obstetric providers to be aware of the ramifications of 20-week bans and take steps to ensure that pregnant women receive high-quality care despite the burdens imposed on the health care decision-making process.