Daniel Dohan

Using navigators to improve care of underserved patients: current practices and approaches.

Logistic, cultural, educational, and other barriers can impede the delivery of high‐quality cancer care to underserved patients. Patient navigation services represent one innovation for addressing perceived barriers to care encountered by disadvantaged patients. In this report, the authors have 1) defined patient navigation, distinguishing it from other cancer support services; 2) described how programs are organized; and 3) discussed the need for research on program effectiveness.

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.

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.

Diversity of Participants in Clinical Trials in an Academic Medical Center The Role of the 'Good Study Patient?'

Only 2.5% of adults and even fewer minorities participate in cancer therapeutic trials. Researchers have concluded that many barriers to participation stem from how recruitment is performed by clinician investigators. The objective of the current research was to document specifically how these barriers impede recruitment in the clinical setting.

Recruiting minorities where they receive care: Institutional barriers to cancer clinical trials recruitment in a safety-net hospital.

INTRODUCTION Most research on the barriers to recruitment of ethnic and racial minorities focuses on patient factors. The purpose of this exploratory case study was to examine how institutional factors impacted recruitment and enrollment in a public hospital clinic frequented by minority patients. METHODS We used ethnographic methods (observations of patient-provider interactions and semi-structured interviews) to document and explain how a number of institutional barriers hindered trials enrollment in a public hospital outpatient breast cancer clinic. RESULTS We identified two categories of institutional barriers: (1) organizational climate, and (2) research specific resources. Organizational climate included qualities of the clinic and hospital such as the clinic structure (clinic hours, patient assignment method), the interdisciplinary care team, the lack of continuity of care, and competing provider priorities of clinical care, teaching, and research. Research specific resources included: staff, funds and institutional status to facilitate opening a range of trials; and linguistically and literacy-appropriate research resources. CONCLUSION Although we cannot determine from our qualitative data the relative impact of different kinds of barriers (e.g. patient, provider, institutional barriers), our data highlights the need to address the role of institutional barriers in efforts to improve minority recruitment to clinical trials. Recruiting participants in safety-net settings may be a reasonable strategy for increasing accrual of ethnic and racial minority patients to cancer clinical trials. However, our qualitative data suggest that while opening protocols for accrual at minority-serving institutions may signal nominal access to trials, achieving substantive access may require further steps to overcome substantial institutional barriers.

“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.

Metrics for evaluating patient navigation during cancer diagnosis and treatment: crafting a policy-relevant research agenda for patient navigation in cancer care

Racial and ethnic minorities as well as other vulnerable populations experience disparate cancer‐related health outcomes. Patient navigation is an emerging health care delivery innovation that offers promise in improving quality of cancer care delivery to these patients who experience unique health‐access barriers. Metrics are needed to evaluate whether patient navigation can improve quality of care delivery, health outcomes, and overall value in health care during diagnosis and treatment of cancer.

Barriers Beyond Words: Cancer, Culture, and Translation in a Community of Russian Speakers

BACKGROUNDLanguage and culture relate in complex ways. Addressing this complexity in the context of language translation is a challenge when caring for patients with limited English proficiency (LEP).OBJECTIVETo examine processes of care related to language, culture and translation in an LEP population is the objective of this study.DESIGNWe used community based participatory research to examine the experiences of Russian-speaking cancer patients in San Francisco, California. A Russian Cancer Information Taskforce (RCIT), including community-based organizations, local government, and clinics, participated in all phases of the study.PARTICIPANTSA purposeful sample of 74 individuals were the participants of the study.APPROACHThe RCIT shaped research themes and facilitated access to participants. Methods were focus groups, individual interviews, and participant observation. RCIT reviewed data and provided guidance in interpreting results.RESULTSFour themes emerged. (1) Local Russian-language resources were seen as inadequate and relatively unavailable compared to other non-English languages; (2) a taboo about the word “cancer” led to language “games” surrounding disclosure; (3) this taboo, and other dynamics of care, reflected expectations that Russian speakers derived from experiences in their countries of origin; (4) using interpreters as cultural brokers or establishing support groups for Russian speakers could help address barriers.CONCLUSIONSThe language barriers experienced by this LEP population reflect cultural and linguistic issues. Providers should consider partnering with trained interpreters to address the intertwining of language and culture.

Public Reporting and Pay-for-Performance: Safety-Net Hospital Executives' Concerns and Policy Suggestions

Safety-net hospitals (SNHs) may gain little financial benefit from the rapidly spreading adoption of public reporting and pay-for-performance, but may feel compelled to participate (and bear the costs of data collection) to meet public expectations of transparency and accountability. To better understand the concerns that SNH administrators have regarding public reporting and pay-for-performance, we interviewed 37 executives at randomly selected California SNHs. The main concerns noted by SNH executives were that human and financial resource constraints made it difficult for SNHs to accurately measure their performance. Additionally, some executives felt that market-driven public reporting and pay-for-performance may focus on clinical areas and incentive structures that may not be high-priority clinical areas for SNHs. Executives at SNHs suggested several policy responses to these concerns—such as offering training programs for SNH data collectors—that could be relatively inexpensive and might improve the cost-benefit ratio of public reporting and pay-for-performance programs.

Social Stigma and the Dilemmas of Providing Care to Substance Users in a Safety-Net Emergency Department

There has been increasing interest in how social stigma affects health care delivery to vulnerable patients but few examples of the dilemmas that may arise for providers who care for stigma-vulnerable populations. Using qualitative data, the authors examine care delivery in a safety-net emergency department where many patients were socially disadvantaged and vulnerable to stigma because of substance use problems. Analysis of our data revealed five themes related to the dilemmas of providing care for this patient population: 1) providers valued assisting vulnerable and underserved patients; 2) providers’ interactions with patients could be challenging; 3) providers did not know if substance involved patients provided accurate medical histories; 4) providers were concerned about drug-seeking behavior; and 5) providers had to balance substance-involved patients’ needs with the necessity of managing limited resources. We discuss how these themes relate to care dynamics and social stigma in the safety-net setting.