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Pain is the most common reason for seeking medical care. Yet treating it is often fraught with uncertainty and a powerful sense of risk in American medicine, particularly in the context of the ongoing opioid crisis. Clinical consensus about the best way to manage many forms of pain remains elusive, and risks ramify beyond individual patients themselves to entangle clinicians and even society at large. The language of "balancing risk" often frames discussions-in both clinical decision-making and public policy-about whether to prioritize relieving pain or preventing addiction and whether to privilege individual or public health. This article takes up the notion of balancing risk to explore the way in which it embeds assumptions about commensurability of profoundly different forms and scales of risk, imagining that they can be calculated, compared, and brought into some kind of give-and-take alignment with one another. Thinking with a "dignity of risk" lens, however, suggests other possible frames, moving us away from such fictive calculations of risk in contemporary pain care and toward a more patient-focused clarification of risk.

To explore parental perspectives regarding disclosure of child and parental adverse childhood experiences (ACE) and family unmet social needs (USN) and to elicit parental recommendations for screening in the pediatric medical home.We conducted a qualitative study using a purposive sample of English- and Spanish-speaking parents in our urban academic community clinic. Between January 2018 and March 2019, each parent underwent one semistructured interview that was audiotaped, transcribed, and independently coded in Atlas.ti by 2 study team members. Data analysis was based in constructivist grounded theory methodology to identify common themes and subthemes.We interviewed 25 English-speaking and 15 Spanish-speaking parents who were mostly female, racial/ethnic minorities with ≥1 ACE. English-speaking subjects were more likely to have a high school degree and be single parents. Four themes were identified: 1) Pediatricians should ask about ACE and USN. 2) Disclosure is a longitudinal process, not a discrete event. 3) Barriers to disclosure are significant, involving concrete and emotional risks for the family. 4) Trauma-informed providers and practices support disclosure.Families support pediatricians addressing ACE and USN in the medical home despite significant barriers. Even if providers screen using trauma-informed principles, parents may prefer not to disclose ACE initially because they regard disclosure as a stepwise process. These findings contribute to a new conceptual framework for thinking of ACE screening not merely as a way to generate information, but as an interactive, therapeutic relationship-building activity irrespective of whether or when it produces disclosure.

Preimplantation genetic testing for monogenic disorders (PGT-M) was originally developed to identify embryos affected with serious childhood-onset disorders, but its use has recently broadened. Guidance on the use of PGT-M in the United States (U.S.) is currently limited, with no formal laws or guidelines established on its use. The goals of this study were to determine for which types of conditions U.S. laboratories currently do not offer PGT-M, to explore ethical considerations U.S. laboratory genetic counselors (GCs) take into consideration when deciding to accept or reject a PGT-M request, and to explore whether U.S. laboratory GCs believe PGT-M should be offered for conditions with reduced penetrance or for variants of uncertain significance (VUS). Qualitative analysis of semi-structured interviews with nine genetic counselors, from five different PGT-M laboratories, was conducted. Participants were required to be GCs working at a PGT-M laboratory in the U.S. and either actively counsel patients on PGT-M or determine a patient's eligibility for PGT-M. Two participants reported their separate laboratories have no limitations for allowable PGT-M testing, while the other seven participants representing three other laboratories reported having limitations. The main ethical consideration GCs reported considering when deciding to accept or reject a PGT-M request was patient autonomy, with a focus on the patient understanding risks of the testing. All participants reported believing PGT-M should be allowable for conditions with reduced penetrance and VUS, with all participants stating their respective laboratories allow for this currently. However, all participants reported a lack of sufficient guidelines and that having guidelines from a professional organization would be beneficial to their practice. In conclusion, lack of current guidelines in the United States has created discrepancies between PGT-M laboratories. PGT-M laboratory GCs support the use of PGT-M for conditions with reduced penetrance and VUS with informed consent. The need for guidelines is supported.

Background: Traditionally, living kidney donors were first-degree relatives due to both greater biological compatibility and concerns about extrafamilial motivation. Because familial relationships often entail distinctive experiences of moral obligation, health-care providers must be attentive to potential undue influences on intrafamilial donor decision-making processes to ensure that decisions are voluntary. Methods: Qualitative interviews were conducted with 20 individuals who donated kidneys to first-degree relatives and subsequently developed end-stage renal disease themselves. Findings: We analyze the different influences kinship obligations had on participants’ decision-making processes. Although participants described their decision to donate as obvious, an appropriate kin response, and free from external pressure, they indirectly expressed some ambivalence—both by their description of the rapidity of the process and in their concern about exposing an intimate to the risks of living donation. Discussion: Our data uncovered an asymmetry. Although our participants claimed that they would donate again, none received a living donor kidney. Our data also highlight the moral significance of the interdependence of donor and recipient in intrafamilial kidney donation and its impact on the range of voluntary choices as perceived by the donor. Their decision-making must be understood as embedded within a network of intimate social relations.

To understand how cultural differences between vascular surgeons (VSs) and interventional radiologists (IRs) affect their clinical decision making and inter-specialty relationships. Twenty-four conversational interviews were conducted with IRs and VSs about their approaches to patient care, views of their specialty and others, and solutions to any expressed concerns. Interview transcripts were systematically analyzed to identify and compare key themes according to the constructivist grounded theory and content analysis using NVivo 10 software. These data were supplemented with a retrospective analysis of 3658 endovascular stent placements performed at a large medical academic center over 11 years. Aggregate counts were divided by provider specialty, and trends were assessed via correlation coefficients. Endovascular stent placements were relatively equally divided between IR and VS over 11 years with some variability from placements by cardiology. IRs tend to lay claim to treatments as masters of procedures, whereas VSs base their claims on being masters of the treated diseases, leading to collaboration in some practices and bitter competition in others. The level of perceived competition was most associated with specialists’ awareness of and appreciation for specialty-specific values rather than differences in practice structure/reimbursement. Understanding cultural differences between IRs and VSs is imperative for fostering better collaboration to grow shared territory rather than competing for the same slice of the pie.

Purpose: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusion: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

Objective Early specialty palliative care is underused for patients with advanced gynecologic malignancies. We sought to understand how gynecologic oncologists9 views influence outpatient specialty palliative care referral to help inform strategies for improvement. Methods/Materials We conducted a qualitative interview study at 6 National Cancer Institute–designated cancer centers with well-established outpatient palliative care services. Between September 2015 and March 2016, 34 gynecologic oncologists participated in semistructured telephone interviews focused on attitudes, experiences, and preferences related to outpatient specialty palliative care. A multidisciplinary team analyzed transcripts using constant comparative methods to inductively develop a coding framework. Through an iterative, analytic process, codes were classified, grouped, and refined into themes. Results Mean (SD) participant age was 47 (10) years. Mean (SD) interview length was 25 (7) minutes. Three main themes emerged regarding how gynecologic oncologists view outpatient specialty palliative care: (1) long-term relationships with patients is a unique and defining aspect of gynecologic oncology that influences referral, (2) gynecologic oncologists value palliative care clinicians9 communication skills and third-party perspective to increase prognostic awareness and help negotiate differences between patient preferences and physician recommendation, and (3) gynecologic oncologists prefer specialty palliative care services embedded within gynecologic oncology clinics. Conclusions Gynecologic oncologists value longitudinal relationships with patients and use specialty palliative care to negotiate conflict surrounding prognostic awareness or the treatment plan. Embedding specialty palliative care within gynecologic oncology clinics may promote communication between clinicians and facilitate gynecologic oncologist involvement throughout the illness course.

Pain demands attention. It demands attention from the individual sufferers whose daily lives it may come to dominate, from the clinicians called upon to interpret and treat it, and from the scholar...

This article provides a brief overview of the critical role that culture can play in renal care, drawing on examples from the social scientific literature to discuss cultural beliefs in three key domains at issue in renal care: beliefs about the kidney itself, about kidney disease, and about kidney treatments. Examining cultural variation within these three key domains across settings ranging from Mexico, USA, China, Egypt, Japan, Turkey, and others provides a means for thinking more deeply and strategically about the role of culture in caring for nephrology patients. The article concludes by offering specific practice strategies designed to strengthen the understanding and communication between clinicians and patients around cultural issues in renal care.

To better understand why interventional radiologists and gynecologists differ in their approaches to symptomatic uterine fibroids.Conversational interviews were conducted with 26 interventional radiologists and gynecologists about their professional roles, clinical reasoning, and practice variation within and outside their specialty. Interview transcripts were systematically analyzed using NVivo 10 software (QSR International, Burlington, Massachusetts) according to grounded theory and content analysis to identify key themes and compare themes across specialties and practice environments. Data were supplemented with retrospective analysis of 7,659 patients with symptomatic uterine fibroids treated at a large academic center over 11 years.Interventional radiologists' shares of symptomatic uterine fibroid treatment and endovascular stent treatments have remained constant (P.05) for 11 y at a large medical center, whereas minimally invasive gynecologic fibroid treatments and the percentage of interventional radiology (IR) procedures reimbursed by Medicaid/Medicare have increased significantly (r.90, P.001 and r = .93, P.001). Interventional radiologists and gynecologists shared a commitment to do "the right thing" for patients, but each group possessed distinct professional values affecting how they viewed medical evidence, outcomes, and their colleagues. When differences were apparent and concerning, physicians tended to suspect ulterior motives not in patients' best interests.Interventional radiologists and gynecologists demonstrated wide-ranging perspectives regarding their role in caring for patients with symptomatic uterine fibroids. To promote genuine collaboration and adoption of shared goals, stakeholders should seek and promote a deeper understanding of specialty-specific values and culture.

In the ICU, discussions between clinicians and surrogate decision makers are often accompanied by conflict about a patient's prognosis or care plan. Trust plays a role in limiting conflict, but little is known about the determinants of trust in the ICU. We sought to identify the dimensions of trust and clinician behaviors conducive to trust formation in the ICU.Prospective qualitative study.Medical ICU of a major urban university hospital.Surrogate decision makers of intubated, mechanically ventilated patients in the medical ICU.Semistructured interviews focused on surrogates' general experiences in the ICU and on their trust in the clinicians caring for the patient. Interviews were audio-recorded, transcribed verbatim, and coded by two reviewers. Constant comparison was used to identify themes pertaining to trust. Thirty surrogate interviews revealed five dimensions of trust in ICU clinicians: technical competence, communication, honesty, benevolence, and interpersonal skills. Most surrogates emphasized the role of nurses in trust formation, frequently citing their technical competence. Trust in physicians was most commonly related to honesty and the quality of their communication with surrogates.Interventions to improve trust in the ICU should be role-specific, since surrogate expectations are different for physicians and nurses with regard to behaviors relevant to trust. Further research is needed to confirm our findings and explore the impact of trust modification on clinician-family conflict.

Pain, despite being an elemental bodily experience and the most common reason for seeking medical care, occupies a place of profound ontological and moral uncertainty in U.S. biomedicine. Taking seriously the highly charged emotions—frustration, anger, even disgust—frequently expressed by clinicians regarding their patients with pain, this article draws on ethnographic research to explore both the origins and the implications of such anxiously ambivalent responses to pain and pain medications among the clinicians charged with treating it. Set against the recent history of pain medicine as an emergent specialty in the highly fragmented landscape of U.S. biomedicine, we examine at close ethnographic range some of the key ways that U.S. clinicians frame the experience of contending with pain in their everyday practice. Emergent from these clinician experiences are the ways in which pain and pain medications remain both incompletely medicalized and ineffectively medicalizing in U.S. biomedicine, as well as the threatening effects on what we call the pharmaceutical subjectivity of clinicians themselves of this persistently ambivalent medicalization.

Context and Objective Donating a kidney may provide an opportunity for donors to reevaluate their health maintenance behaviors (eg, regular exercise, smoking cessation, medical checkups). Although the effect of donation on donors' health, quality of life, and financial outcomes has received growing attention, no studies have examined whether donation is related to changes in health maintenance behaviors. The study aims were to (1) describe and compare kidney donors' health maintenance behaviors before and after donation, and (2) determine the correlates of health maintenance behaviors after donation. Design, Setting, Participants and Measures We conducted a telephone-interview study with 85 randomly selected laparoscopic kidney donors in a major US transplant center to assess health behaviors before and after donation, postdonation characteristics (eg, quality of life, postsurgical pain), and demographics. Results Sample demographics included a median age of 48 years; 55% were female, 82% were white, 71% were married, and 52% were college graduates. Few health behaviors changed significantly from before to after donation. Only the rate of medical checkups increased after donation ( P< .001). Logistic regression was used to examine the association of demographics and postdonation characteristics with postdonation health maintenance behaviors, after adjusting for predonation behavior. Older age, higher income, less postsurgical pain, and better physical functioning were associated with more exercise after donation. Longer time since donation was associated with a higher prevalence of obesity. Conclusions These results may help identify donors who are at greater risk for poor health maintenance behaviors after donation and suggest areas of health behavior that should be the focus of education sessions before donation.

Objectives. To explore how social scientific analyses of the culture of biomedicine may contribute to advancing our understanding of ongoing issues of quality and equity in pain management. Design. Drawing upon the rich body of social scientific literature on the culture of biomedicine, we identify key features of biomedical culture with particular salience for pain management. We then examine how these cultural features of biomedicine may shape key phases of the pain management process in ways that have implications not just for quality, but for equity in pain management as well. Setting and Patients. We bring together a range of literatures in developing our analysis, including literatures on the culture of biomedicine, pain management and health care disparities. Measures. We surveyed the relevant literatures to identify and inter-relate key features of biomedical culture, key phases of the pain management process, and key dimensions of identified problems with suboptimal and inequitable treatment of pain. Results. We identified three key features of biomedical culture with critical implications for pain management: 1) mind-body dualism; 2) a focus on disease vs illness; and 3) a bias toward cure vs care. Each of these cultural features play a role in the key phases of pain management, specifically pain-related communication, assessment and treatment decision-making, in ways that may hinder successful treatment of pain in general—and of pain patients from disadvantaged groups in particular. Conclusions. Deepening our understanding of the role of biomedical culture in pain management has implications for education, policy and research as part of ongoing efforts to ameliorate problems in both quality and equity in managing pain. In particular, we suggest that building upon the existing the cultural competence movement in medicine to include fostering a deeper understanding of biomedical culture and its impact on physicians may be useful. From a policy perspective, we identify pain management as an area where the need for a shift to a more biopsychosocial model of health care is particularly pressing, and suggest prioritization of inter-disciplinary, multimodal approaches to pain as one key strategy in realizing this shift. Finally, in terms of research, we identify the need for empirical research to assess aspects of biomedical culture that may influence physician's attitudes and behaviors related to pain management, as well as to explore how these cultural values and their effects may vary across different settings within the practice of medicine.

Background: Psychosocial data about living kidney donors have been collected for almost 5 decades now. To date, however, no study has provided any psychosocial follow-up of donors who developed a serious health problem such as end-stage renal disease (ESRD). Methods: Donors who developed ESRD were invited to participate in a qualitative interview if they met one or both of the inclusion criteria: (1) developed ESRD within 10 years of donating and/or (2) lacked health insurance at the time of donation. We contacted 38 individuals who met these criteria, and 22 participated (58%). Two were subsequently excluded from analysis. Results: Twenty qualitative interviews were analyzed. Five findings are described: (1) donors describe the decision-making process as spontaneous and fast; (2) donors describe lack of appreciation for the need for post-donation self-care; (3) donors do not regret donating despite the adverse outcome; (4) donors advise future donors to have in place emotional and physical support post donation; and (5) donors appreciate the opportunity to tell their story from being a living donor to living with ESRD, which virtually all perceive as 2 separate unrelated events. Conclusions: Most donors are positive about their donation decision and experience and would donate again, despite developing ESRD themselves. They propose some important changes to the decision-making and informed-consent processes. Our data are reassuring regarding lack of donor regret, but highlight the need for living donor transplant programs to ensure that living donors understand their long-term risks and receive appropriate life-long follow-up care to minimize these risks.

This article explores the cultural features of death and dying. Following a broad discussion of death as a problem—materially, socially, and existentially—to which diverse responses have been developed historically and cross-culturally, the concept of culture is defined and explored in terms of the way it has been taken up in the practice of medicine more generally and in discussions about death in particular. Arguing that the “problem of death” in America has increasingly come to be identified as a “problem of culture,” the article takes two classic ethnographies of dying in American hospitals—spaced forty years apart—as a strategic comparative lens through which to examine how key cultural features of death and dying have (and have not) shifted over a particularly critical period in the history of US health care.

In this article, we demonstrate how living kidney donation is a particularly gendered experience. We draw on anthropologists' contributions to understanding the globalization of reproductive technologies to argue that kidney donation similarly endangers and preserves fertility, thereby unsettling and reifying gendered familial labor. Based on fieldwork in two ethnographic sites--Egypt and Mexico--we examine how kidney donation is figured as a form of social reproduction. In both settings, kidney recipients rely almost exclusively on organs from living donors. We focus on how particular gender ideologies--as evident, for example, in the trope of the "self-sacrificing mother"--can serve as a cultural technology to generate donations in an otherwise organ-scarce medical setting. Alternatively, transplantation can disrupt gender norms and reproductive viability. In demonstrating the pervasiveness of gendered tropes in the realm of transplantation, we unsettle assumptions about the "family" as the locus of pure, altruistic donation.

PurposePatients with hematologic malignancies are less likely to receive specialist palliative care services than patients with solid tumors. Reasons for this difference are poorly understood.MethodsThis was a multisite, mixed-methods study to understand and contrast perceptions of palliative care among hematologic and solid tumor oncologists using surveys assessing referral practices and in-depth semistructured interviews exploring views of palliative care. We compared referral patterns using standard statistical methods. We analyzed qualitative interview data using constant comparative methods to explore reasons for observed differences.ResultsAmong 66 interviewees, 23 oncologists cared exclusively for patients with hematologic malignancies; 43 treated only patients with solid tumors. Seven (30%) of 23 hematologic oncologists reported never referring to palliative care; all solid tumor oncologists had previously referred. In qualitative analyses, most hematologic oncologists viewed palliative care as end-of-life care, whereas most solid tumor oncologists viewed palliative care as a subspecialty that could assist with complex patient cases. Solid tumor oncologists emphasized practical barriers to palliative care referral, such as appointment availability and reimbursement issues. Hematologic oncologists emphasized philosophic concerns about palliative care referrals, including different treatment goals, responsiveness to chemotherapy, and preference for controlling even palliative aspects of patient care.ConclusionMost hematologic oncologists view palliative care as end-of-life care, whereas solid tumor oncologists more often view palliative care as a subspecialty for comanaging patients with complex cases. Efforts to integrate palliative care into hematologic malignancy practices will require solutions that address unique barriers to palliative care referral experienced by hematologic malignancy specialists.

Organ donation and transplantation, now practiced in many places around the world, provoke fundamental questions of both meaning and social justice. Drawing on ethnographic research in North Americ...

Organ transplantation offers a dramatic example of the promises for health held out by biomedicine—and thus, a productive vantage point from which to interrogate those promises. Drawing on ethnographic research on kidney transplantation in Guadalajara, Mexico, this article examines the version of “health” offered to patients through transplantation. The paper explores patients’ transplant trajectories as they move from learning to desire a transplant to actually receiving one and living with it over the long term, all within particular structuring sociocultural and political economic conditions. The article analyzes how transplanted patients are forced to come to terms with the contingent states of “health” and “normality” wrought by transplantation as they carve out an existence in the persistently liminal spaces between the roles of “sick” and “healthy,” dependent patient and fully contributing family member.

The use of living donors in general is increasing, and there is evidence of increasing willingness among transplant centers to consider nondirected living donation (NDLD) as well. Yet few systematic data are available on the number of centers performing NDLD and the degree to which current policies and practices reflect existing guideline recommendations. We conducted a telephone survey of the 25 highest volume transplant centers and 25 highest volume organ procurement organizations (OPOs) to describe their NDLD-related policies and experiences. Survey responses revealed that inquiries about NDLD from interested potential donors are common, likely to increase, and generally not formally monitored. More than half of transplant centers surveyed currently perform or are willing to perform NDLD (14/25), and although only three OPOs currently facilitate NDLD, the majority of the remaining organizations reported that an NDLD policy was in development. Among those organizations that did facilitate NDLD, the majority applied current living-donor guidelines and practices to NDLDs. Most transplant centers performing NDLD distributed these donations to patients from their own waiting list by using United Network for Organ Sharing criteria. This preliminary description of current NDLD experiences suggests that although NDLD is growing, the policies and practices governing it are being developed on an ad hoc basis at the level of individual organizations. Additional research is needed to characterize the full range of NDLD activity at both higher and lower volume organizations, and to explore a broader range of questions about current NDLD policy and practice in the United States.

In this brief commentary, we reflect on the recent study by Siminoff, Burant, and Youngner of public attitudes toward "brain death" and organ donation, focusing on the implications of their findings for the rules governing from whom organs can be obtained. Although the data suggest that many seem to view "brain death" as "as good as death" rather than "dead" (calling the dead donor rule into question), we find that the study most clearly demonstrates that understanding an individual's definition of death is neither a straightforward task nor a good predictor of views about donation. Reflecting on the implications for ongoing debates over the dead donor rule, we suggest that perhaps it is not a change in policy that is warranted, but rather a change in the priorities that have garnered such intense focus on this issue within the field of bioethics.

Purpose In response to limited physician adoption of various healthcare initiatives, we sought to propose and assess a novel approach to policy development where one first characterizes diverse physician groups’ common interests, using a medical student and constructivist grounded theory. Methods In 6 months, a medical student completed 36 semi-structured interviews with interventional radiologists, gynecologists, and vascular surgeons that were systematically analyzed according to constructivist grounded theory to identifying common themes. Common drivers of clinical decision making and professional values across 3 distinct specialty groups were derived from physicians’ descriptions of their clinical decision making, stories, and concerns. Results Common drivers of clinical decision making included patient preference/benefit, experience, reimbursement, busyness/volume, and referral networks. Common values included honesty, trustworthiness, loyalty, humble service, compassion and perseverance, and practical wisdom. Although personal gains were perceived as important interests, such values were easily sacrificed for the good of patients or other non-financial interests. This balance was largely dependent on the incentives and security provided by physicians’ environments. Conclusions Using a medical student interviewer and constructivist grounded theory is a feasible means of collecting rich qualitative data to guide policy development. Healthcare administrators and medical educators should consider incorporating this methodology early in policy development to anticipate how value differences between physician groups will influence their acceptance of policies and other broad healthcare initiatives.

PurposeRecent research and professional guidelines support expanded use of outpatient subspecialty palliative care in oncology, but provider referral practices vary widely. We sought to explore oncologist factors that influence referrals to outpatient palliative care.MethodsMultisite, qualitative interview study at three academic cancer centers in the United States with well-established palliative care clinics. Seventy-four medical oncologists participated in semistructured interviews between February and October 2012. The interview guide asked about experiences and decision making regarding outpatient palliative care use. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine themes related to palliative care referral decisions.ResultsWe identified three main oncologist barriers to subspecialty palliative care referrals at sites with comprehensive palliative care clinics: persistent conceptions of palliative care as an alternative philosophy of care incompatible with cancer therapy, a predominant belief that providing palliative care is an integral part of the oncologist's role, and a lack of knowledge about locally available services. Participants described their views of subspecialty palliative care as evolving in response to increasing availability of services and positive referral experiences, but emphasized that views of palliative care as valuable in addition to standard oncology care were not universally shared by oncologists.ConclusionsImproving provision of palliative care in oncology will likely require efforts beyond increasing service availability. Raising awareness of ways in which subspecialty palliative care complements standard oncology care and developing ways for oncologists and palliative care physicians to collaborate and integrate their respective skills may help.

Surrogates of critically ill patients in the intensive care unit (ICU) want honest prognostic information, but they also want to hear good news. There has been little examination of how surrogates navigate these dual needs or how clinicians should respond.The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians.We conducted a qualitative interview study with 30 surrogates facing life-sustaining treatment decisions in five ICUs in Pittsburgh, Pennsylvania. In-depth, semi-structured interviews with surrogates in the ICU focused on general experiences, emotional needs, informational needs, and recommendations for clinicians. We inductively analyzed transcripts for key themes using constant comparative methods.Surrogates experience a tension between wanting to know what to expect and needing to remain hopeful. This tension underlies their experience receiving prognostic information and may lead to behaviors that allow continued hope in the face of bad news, including: 1) focusing on small details rather than the big picture, 2) relying on gut instincts or personal beliefs about the patient, 3) seeking more positive prognostic information from other sources, and, for a minority, 4) avoiding or disbelieving prognostic information. Surrogates emphasize the importance of frequent communication and call on physicians to gently help them prepare for the worst and hope for the best.Surrogates in the ICU experience conflicting emotional and informational needs. They describe behaviors that give the appearance of avoiding bad news while simultaneously asking physicians to help them cope with prognostic information.

BackgroundAlthough numerous studies have addressed external factors associated with difficulty in surrogate decision making, intrapersonal sources of tension are an important element of decision making that have received little attention.ObjectiveTo characterize key intrapersonal tensions experienced by surrogate decision makers in the intensive care unit (ICU), and explore associated coping strategies.DesignQualitative interview study.ParticipantsThirty surrogates from five ICUs at two hospitals in Pittsburgh, Pennsylvania, who were actively involved in making life-sustaining treatment decisions for a critically ill loved one.ApproachWe conducted in-depth, semi-structured interviews with surrogates, focused on intrapersonal tensions, role challenges, and coping strategies. We analyzed transcripts using constant comparative methods.Key resultsSurrogates experience significant emotional conflict between the desire to act in accordance with their loved one's values and 1) not wanting to feel responsible for a loved one's death, 2) a desire to pursue any chance of recovery, and 3) the need to preserve family well-being. Associated coping strategies included 1) recalling previous discussions with a loved one, 2) sharing decisions with family members, 3) delaying or deferring decision making, 4) spiritual/religious practices, and 5) story-telling.ConclusionsSurrogates' struggle to reconcile personal and family emotional needs with their loved ones' wishes, and utilize common coping strategies to combat intrapersonal tensions. These data suggest reasons surrogates may struggle to follow a strict substituted judgment standard. They also suggest ways clinicians may improve decision making, including attending to surrogates' emotions, facilitating family decision making, and eliciting potential emotional conflicts and spiritual needs.

Pain specialists often advocate discontinuing use of the term "narcotic," with the negative connotations it bears for many patients, in favor of the term "opioid." To contribute empirical data to this argument, we elicited and compared patient understandings of the terms "narcotic" and "opioid."Brief, anonymous surveys were administered to 100 outpatients. Respondents were asked to describe what a narcotic/opioid is, give example(s), explain why someone would take a narcotic/opioid and describe long term consequences of use.Of the 100 outpatients, 86% responded "don't know" to all four opioid questions. Only 12% did not know what a narcotic was (p001). While 50% of patients related "narcotics" to pain management, more than a third cited addiction or abuse. Of the 100 outpatients, 78% feared an adverse outcome from long-term narcotic use, with 66% of those answers citing "addiction."Most patients were unfamiliar with the term opioid, while a substantial percentage identified a narcotic as an illegal drug and most reported adverse consequences as the outcome of long term use. Our findings, while preliminary, suggest that "opioid" is a more unfamiliar term, but raise questions about whether simply using different terminology would affect patient fears about this class of medications.

These long-time barriers to widespread use of living organ donation, and the resulting desire of transplant professionals to ensure that undesirable risks to donors are minimized, have led to a major focus in most transplant programs on extensive predonation psychosocial evaluation of potential donors, as well as a growing research literature on post-donation psychosocial costs and benefits to living organ donors. This chapter reviews the predonation evaluation issues that are critical when considering the psychosocial eligibility of potential donors, as well as the post-donation data on donor psychosocial outcomes. (See other chapters in this text for discussions of ethical issues in living donor evaluation, financial issues, and medical outcomes in living donors.) Before addressing the central psychosocial issues, we provide a brief overview of the broad social and psychological context in which the donation of living organs takes place, considering both the key elements of the unique gift-giving relationship between the donor and recipient, and the nature of the medical altruism that allows this relationship to develop.

We provide a framework for health services–related researchers, practitioners, and policy makers to guide future health disparities research in areas ranging from detecting differences in health and health care to understanding the determinants that underlie disparities to ultimately designing interventions that reduce and eliminate these disparities. To do this, we identified potential selection biases and definitions of vulnerable groups when detecting disparities. The key factors to understanding disparities were multilevel determinants of health disparities, including individual beliefs and preferences, effective patient–provider communication; and the organizational culture of the health care system. We encourage interventions that yield generalizable data on their effectiveness and that promote further engagement of communities, providers, and policymakers to ultimately enhance the application and the impact of health disparities research.

Background.AlthoughtheNationalMarrowDonorProgramhasbeenhighlysuccessfulatrecruitingethnicminorities as potential hematopoietic stem cell donors, there have been no systematic investigations of whether donor characteristics that might be linked to the donation experience vary by ethnicity. Methods. Questionnaires assessing four domains—demographic, volunteer-related, general psychosocial, and donation-related—were mailed to potential donors after they were contacted as a preliminary match for a patient and had agreed to donate. In all, 1,679 potential donors completed and returned a predonation questionnaire. Data from potential donors belonging to five major ethnic groups were analyzed; white, black, Asian/Pacific Islander, Hispanic, and Native American. Results.Bivariate analyses indicated that virtually all factors in the four domains were associated with ethnicity. Direct discriminant function analysis identified three significant functions. The most striking of the three functions indicated that Asian Americans were more highly educated, more ambivalent (reluctant about donation), more concerned (medical, work/family), and more anxious and depressed than all other ethnic groups. Key differences among other ethnic group members were also identified. Conclusions. This study provides the first evidence of ethnic group differences in key predonation variables. Findings suggestthatAsian/PacificIslanderspossessanumberofcharacteristicsthatareknownpsychosocialriskfactorsforless positive postdonation outcomes and that more intensive pre and postdonation contact with this group may be necessary. Strategies for improving future research in this area are discussed.