Janelle S. Taylor

Surviving Surrogate Decision-Making: What Helps and Hampers the Experience of Making Medical Decisions for Others

BACKGROUNDA majority of end-of-life medical decisions are made by surrogate decision-makers who have varying degrees of preparation and comfort with their role. Having a seriously ill family member is stressful for surrogates. Moreover, most clinicians have had little training in working effectively with surrogates.OBJECTIVESTo better understand the challenges of decision-making from the surrogate’s perspective.DESIGNSemistructured telephone interview study of the experience of surrogate decision-making.PARTICIPANTSFifty designated surrogates with previous decision-making experience.APPROACHWe asked surrogates to describe and reflect on their experience of making medical decisions for others. After coding transcripts, we conducted a content analysis to identify and categorize factors that made decision-making more or less difficult for surrogates.RESULTSSurrogates identified four types of factors: (1) surrogate characteristics and life circumstances (such as coping strategies and competing responsibilities), (2) surrogates’ social networks (such as intrafamily discord about the “right” decision), (3) surrogate–patient relationships and communication (such as difficulties with honoring known preferences), and (4) surrogate–clinician communication and relationship (such as interacting with a single physician whom the surrogate recognizes as the clinical spokesperson vs. many clinicians).CONCLUSIONSThese data provide insights into the challenges that surrogates encounter when making decisions for loved ones and indicate areas where clinicians could intervene to facilitate the process of surrogate decision-making. Clinicians may want to include surrogates in advance care planning prior to decision-making, identify and address surrogate stressors during decision-making, and designate one person to communicate information about the patient’s condition, prognosis, and treatment options.

Beyond Substituted Judgment: How Surrogates Navigate End‐of‐Life Decision‐Making

OBJECTIVES: To characterize how surrogates plan to make medical decisions for others.

The Disappearing Subject:: Exclusion of People with Cognitive Impairment and Dementia from Geriatrics Research

To evaluate exclusion of persons with cognitive impairment from research in geriatrics by determining its frequency, method, and rationale and treatment in the resulting publications.

Humanism, the Hidden Curriculum, and Educational Reform: A Scoping Review and Thematic Analysis.

Background Medical educators have used the hidden curriculum concept for over three decades to make visible the effects of tacit learning, including how culture, structures, and institutions influence professional identity formation. In response to calls to see more humanistic-oriented training in medicine, the authors examined how the hidden curriculum construct has been applied in the English language medical education literature with a particular (and centering) look at its use within literature pertaining to humanism. They also explored the ends to which the hidden curriculum construct has been used in educational reform efforts (at the individual, organizational, and/or systems levels) related to nurturing and/or increasing humanism in health care. Method The authors conducted a scoping review and thematic analysis that draws from the tradition of critical discourse analysis. They identified 1,887 texts in the literature search, of which 200 met inclusion criteria. Results The analysis documents a strong preoccupation with negative effects of the hidden curriculum, particularly the moral erosion of physicians and the perceived undermining of humanistic values in health care. A conflation between professionalism and humanism was noted. Proposals for reform largely target medical students and medical school faculty, with very little consideration for how organizations, institutions, and sociopolitical relations more broadly contribute to problematic behaviors. Conclusions The authors argue that there is a need to transcend conceptualizations of the hidden curriculum as antithetical to humanism and offer suggestions for future research that explores the necessity and value of humanism and the hidden curriculum in medical education and training.

Provider Perspectives on Advance Care Planning for Patients with Kidney Disease: Whose Job Is It Anyway?

BACKGROUND AND OBJECTIVES There is growing interest in efforts to enhance advance care planning for patients with kidney disease. Our goal was to elicit the perspectives on advance care planning of multidisciplinary providers who care for patients with advanced kidney disease. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS Between April and December of 2014, we conducted semistructured interviews at the Department of Veterans Affairs Puget Sound Health Care System with 26 providers from a range of disciplines and specialties who care for patients with advanced kidney disease. Participants were asked about their perspectives and experiences related to advance care planning in this population. Interviews were audiotaped, transcribed, and analyzed inductively using grounded theory. RESULTS The comments of providers interviewed for this study spoke to significant system-level barriers to supporting the process of advance care planning for patients with advanced kidney disease. We identified four overlapping themes: (1) medical care for this population is complex and fragmented across settings and providers and over time; (2) lack of a shared understanding and vision of advance care planning and its relationship with other aspects of care, such as dialysis decision making; (3) unclear locus of responsibility and authority for advance care planning; and (4) lack of active collaboration and communication around advance care planning among different providers caring for the same patients. CONCLUSIONS The comments of providers who care for patients with advanced kidney disease spotlight both the need for and the challenges to interdisciplinary collaboration around advance care planning for this population. Systematic efforts at a variety of organizational levels will likely be needed to support teamwork around advance care planning among the different providers who care for patients with advanced kidney disease.

The Moral Aesthetics of Simulated Suffering in Standardized Patient Performances

Standardized patient (SP) performances are staged clinical encounters between health-professional students and people who specialize in role-playing the part of patients. Such performances have in recent years become increasingly central to the teaching and assessment of clinical skills in U.S. medical schools. SP performances are valued for being both “real” (in that they involve interaction with a real person, unlike written examinations) and “not real” (in that the SP does not actually suffer from the condition portrayed, unlike an actual patient). This article considers how people involved in creating SP performances reconcile a moral commitment to avoid suffering (to keep it “not real”), with an aesthetic commitment to realistically portray it (to keep it “real”). The term “moral aesthetic” is proposed, to indicate a sensibility that combines ideas about what is morally right with ideas about what is aesthetically compelling. Drawing on ethnographic research among SPs and SP program staff and medical faculty who work closely with them, this article argues that their work of creating “realism” in simulated clinical encounters encompasses multiple different (and sometimes conflicting) understandings and practices of realism, informed by three different moral aesthetics: (1) a moral aesthetic of induction, in which an accurate portrayal with a well-documented provenance serves to introduce experientially distant forms of suffering; (2) a moral aesthetic of inoculation, in which the authenticity and emotional impact of a performance are meant to inoculate students against the impact of future encounters with suffering; (3) a moral aesthetic of presence, generating forms of voice and care that are born out of the embodied presence of suffering individuals in a clinical space. All are premised on the assumption that risk and suffering can be banished from SP performances. This article suggests, however, that SP performances necessarily raise the same difficult, important, fundamentally ethical questions that are always involved in learning from and on human beings who are capable of suffering, and who need and deserve recognition and respect as well as care.

How do surrogate decision makers describe hospice? Does it matter?

We interviewed 71 surrogate decision makers of older, chronically ill veterans to explore their knowledge of hospice and their role in helping loved ones access hospice services. We asked them to describe hospice and any previous hospice experiences. Qf the group, 24 percent with hospice experience and 14 percent without hospice experience correctly described three key aspects of hospice: who hospice cares for, where the care is provided, and the goal of the care. Additionally, we found evidence that surrogates who correctly described the three key aspects of hospice were inclined to pursue hospice care for loved ones in the future, and surrogates who provided less complete descriptions of hospice might not access it. Since surrogates often help dying patients access care, incomplete knowledge of hospice may be an important barrier to hospice services. We advocate that clinicians discuss the three key aspects of hospice during routine advance care planning sessions with patients and their future surrogate decision makers.

The public life of the fetal sonogram and the work of the sonographer

Fetal sonograms have been taken up outside the clinical setting in U.S. popular culture and media, in ways that may impinge upon, and that have also emerged out of, the work of the sonographer. As members of an emerging technical profession composed primarily of women, sonographers have worked hard to develop and promote ultrasound and have debated whether their professional identity ought to rest exclusively on their technical “skill” or also on their (feminine) capacity for “caring.” Over time, the obstetrical exam has come to incorporate rituals of showing and telling and giving out pictures, that have allowed sonographers both to “sell” ultrasound and to respond to their pregnant patients in a caring manner. Ironically, however, these same elements have also set the stage for antiabortion advocates to use fetal sonograms in ways quite harmful to the interests not only of women but also of the sonographers who seek to treat them with both skill and care.

What Are Our AIMs? Interdisciplinary Perspectives on the Use of Ancestry Estimation in Disease Research

Background: Ancestry estimation serves as a tool to identify genetic contributions to disease but may contribute to racial discrimination and stigmatization. We sought to understand user perspectives on the benefits and harms of ancestry estimation to inform research practice and contribute to debates about the use of race and ancestry in genetics. Methods: Key informant interviews with 22 scientists were conducted to examine scientists’ understandings of the benefits and harms of ancestry estimation. Results: Three main perspectives were observed among key informant scientists who use ancestry estimation in genetic epidemiology research. Population geneticists self-identified as educators who controlled the meaning and application of ancestry estimation in research. Clinician-researchers were optimistic about the application of ancestry estimation to individualized risk assessment and personalized medicine. Epidemiologists remained ambivalent toward ancestry estimation and suggested a continued role for race in their research. Conclusions: We observed an imbalance of control over the meaning and application of ancestry estimation among disciplines that may result in unwarranted or premature translation of ancestry estimation into medicine and public health. Differences in disciplinary perspectives need to be addressed if translational benefits of genetic ancestry estimation are to be realized.

Engaging with Dementia: Moral Experiments in Art and Friendship

The box-office as well as critical success of the 2014 major motion picture Still Alice, starring Julianne Moore in the title role and based on the bestselling novel of the same name by the Harvard-trained neuroscientist Lisa Genova (Still Alice. Simon & Schuster, New York, 2009), marked an important moment in public cultural representations of people with dementia. Still Alice tells the story of Alice Howland, an eminent scientist whose increasing memory lapses are eventually diagnosed as early-onset Alzheimer’s, and chronicles the transformations in her family relationships as her husband and three children respond to her decline in different ways. Alice’s husband, her son, and her older daughter all respond by turning toward science, while her younger daughter Lydia seeks to engage her mother as she is now, and turns toward art and relationships. Taking Still Alice and the figure of Lydia as an entry point, I discuss arts-focused efforts to improve the lives of people with dementia, and draw upon ongoing interview-based research on the topic of dementia and friendship, to offer an account of some of the ways that people I have spoken with are actively experimenting with art and with relationships in the face of dementia. I argue that these efforts can be understood as “moral experiements,” in the sense articulated by Cheryl Mattingly (Moral Laboratories: Family Peril and the Struggle for a Good Life. University of California Press, Berkeley, 2014). Although Lydia is a fictional character, her response to Alice’s dementia points toward the kinds of moral experimentation that are in fact possible, and quietly being practiced, by ordinary people every day.