Megan Crowley-Matoka

Advancing Health Disparities Research Within the Health Care System: A Conceptual Framework

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.

I don't want to be the one saying 'we should just let him die': intrapersonal tensions experienced by surrogate decision makers in the ICU.

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.

Long‐Term Quality of Life Issues Among Adult‐to‐Pediatric Living Liver Donors: A Qualitative Exploration

Use of live donors as a source of transplantable livers has expanded to include adult recipients. Follow‐up reports concerning living donor experiences are short‐term and primarily focus on medical outcomes. We present our quality of life findings from a purposive sampling of a cohort of adult‐to‐pediatric live liver donors, 3–10 years after donation. In‐depth interviews conducted among 15 live donors revealed the spectrum of complexity and impact that donation had on the donors. Virtually all donors (14/15) reported that they never really made a decision to donate; rather, agreeing to donate was an automatic leap. Overall, 10 out of the 15 donors related a sense that they were considered nonpatients by the medical team and family members in two primary areas: post operative treatment of pain (6/15) and long‐term follow‐up care (9/15) with five donors reporting concerns in both areas. Overall, family relationships were believed to have been strengthened by the donation process. Most donors experienced some degree of financial strain with three donors maintaining unrewarding employment to continue healthcare insurance. The majority of donors reported that return to normalcy took a significant amount of time even though no serious medical consequences were experienced. These observations serve to highlight some of the long‐term quality of life issues that persist beyond the medical consequences of live donation.

Oncologist factors that influence referrals to subspecialty palliative care clinics.

PURPOSE Recent 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. METHODS Multisite, 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. RESULTS We 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 oncologists 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. CONCLUSIONS Improving 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.

Perceptions of Palliative Care Among Hematologic Malignancy Specialists: A Mixed-Methods Study

PURPOSE Patients with hematologic malignancies are less likely to receive specialist palliative care services than patients with solid tumors. Reasons for this difference are poorly understood. METHODS This 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. RESULTS Among 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. CONCLUSION Most 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.

Problems of Quality and Equity in Pain Management: Exploring the Role of Biomedical Culture

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 physicians 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.

“It Hurts To Know…And It Helps”: Exploring How Surrogates in the ICU Cope with Prognostic Information

BACKGROUND 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. OBJECTIVE The aim of this study was explore how surrogates in the ICU experience and cope with prognostic information and describe their recommendations for clinicians. METHODS 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. RESULTS 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. CONCLUSIONS 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.

Organ transplantation in a globalised world

Abstract 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 America, Japan, Mexico, Europe, and India, this paper offers a comparative view of how transplantation is practiced and experienced in different settings, focusing on variation across three key issues consistently raised by transplantation: (1) the (re)definition of death, (2) conceptions of body, self, and identity; and (3) the commodification of human body parts. Exploring this cross-cultural variation provides critical resources for continuing to grapple with the ever-evolving questions of practice and meaning raised by transplantation, as we debate transplantation as it is, could, and should be.

Ethnic Differences in Donation-Related Characteristics among Potential Hematopoietic Stem Cell Donors

Background. Although the National Marrow Donor Program has been highly successful at recruiting ethnic minorities 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 suggest that Asian/Pacific Islanders possess a number of characteristics that are known psychosocial risk factors for less 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.

Nondirected living donation: a survey of current trends and practices.

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.