Helene Starks

Choose Your Method: A Comparison of Phenomenology, Discourse Analysis, and Grounded Theory:

The purpose of this article is to compare three qualitative approaches that can be used in health research: phenomenology, discourse analysis, and grounded theory. The authors include a model that summarizes similarities and differences among the approaches, with attention to their historical development, goals, methods, audience, and products. They then illustrate how these approaches differ by applying them to the same data set. The goal in phenomenology is to study how people make meaning of their lived experience; discourse analysis examines how language is used to accomplish personal, social, and political projects; and grounded theory develops explanatory theories of basic social processes studied in context. The authors argue that by familiarizing themselves with the origins and details of these approaches, researchers can make better matches between their research question(s) and the goals and products of the study.

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.

Visiting the Emergency Department for Dental Problems: Trends in Utilization, 2001 to 2008

OBJECTIVES We tested the hypothesis that between 2001 and 2008, Americans increasingly relied upon emergency departments (EDs) for dental care. METHODS Data from 2001 through 2008 were collected from the National Hospital Ambulatory Medical Care Survey (NHAMCS). Population-based visit rates for dental problems, and, for comparison, asthma, were calculated using annual US Census Bureau estimates. As part of the analysis, we described patient characteristics associated with large increases in ED dental utilization. RESULTS Dental visit rates increased most dramatically for the following subpopulations: those aged 18 to 44 years (7.2-12.2 per 1000, P < .01); Blacks (6.0-10.4 per 1000, P < .01); and the uninsured (9.5-13.2 per 1000, P < .01). Asthma visit rates did not change although dental visit rates increased 59% from 2001 to 2008. CONCLUSIONS There is an increasing trend in ED visits for dental issues, which was most pronounced among those aged 18 to 44 years, the uninsured, and Blacks. Dental visit rates increased significantly although there was no overall change in asthma visit rates. This suggests that community access to dental care compared with medical care is worsening over time.

Motivations for Physician-assisted Suicide

AbstractOBJECTIVE: To obtain detailed narrative accounts of patients’ motivations for pursuing physician-assisted suicide (PAS). DESIGN: Longitudinal case studies. PARTICIPANTS: Sixty individuals discussed 35 cases. Participants were recruited through advocacy organizations that counsel individuals interested in PAS, as well as hospices and grief counselors. SETTING: Participants’ homes. MEASUREMENTS AND RESULTS: We conducted a content analysis of 159 semistructured interviews with patients and their family members, and family members of deceased patients, to characterize the issues associated with pursuit of PAS. Most patients deliberated about PAS over considerable lengths of time with repeated assessments of the benefits and burdens of their current experience. Most patients were motivated to engage in PAS due to illness-related experiences (e.g., fatigue, functional losses), a loss of their sense of self, and fears about the future. None of the patients were acutely depressed when planning PAS. CONCLUSIONS: Patients in this study engaged in PAS after a deliberative and thoughtful process. These motivating issues point to the importance of a broad approach in responding to a patient’s request for PAS. The factors that motivate PAS can serve as an outline of issues to explore with patients about the far-reaching effects of illness, including the quality of the dying experience. The factors also identify challenges for quality palliative care: assessing patients holistically, conducting repeated assessments of patients’ concerns over time, and tailoring care accordingly.

Implementing a Death with Dignity Program at a Comprehensive Cancer Center

BACKGROUND The majority of Death with Dignity participants in Washington State and Oregon have received a diagnosis of terminal cancer. As more states consider legislation regarding physician-assisted death, the experience of a comprehensive cancer center may be informative. METHODS We describe the implementation of a Death with Dignity program at Seattle Cancer Care Alliance, the site of care for the Fred Hutchinson-University of Washington Cancer Consortium, a comprehensive cancer center in Seattle that serves the Pacific Northwest. Institution-level data were compared with publicly available statewide data from Oregon and Washington. RESULTS A total of 114 patients inquired about our Death with Dignity program between March 5, 2009, and December 31, 2011. Of these, 44 (38.6%) did not pursue the program, and 30 (26.3%) initiated the process but either elected not to continue or died before completion. Of the 40 participants who, after counseling and upon request, received a prescription for a lethal dose of secobarbital (35.1% of the 114 patients who inquired about the program), all died, 24 after medication ingestion (60% of those obtaining prescriptions). The participants at our center accounted for 15.7% of all participants in the Death with Dignity program in Washington (255 persons) and were typically white, male, and well educated. The most common reasons for participation were loss of autonomy (97.2%), inability to engage in enjoyable activities (88.9%), and loss of dignity (75.0%). Eleven participants lived for more than 6 months after prescription receipt. Qualitatively, patients and families were grateful to receive the lethal prescription, whether it was used or not. CONCLUSIONS Overall, our Death with Dignity program has been well accepted by patients and clinicians.

Advance care planning: eliciting patient preferences for life-sustaining treatment

Patient autonomy is a guiding principle in medical decision-making in America. This is challenging when patients become mentally incapacitated and cannot express their preferences. Advance care planning (ACP) addresses this challenge. ACP is a deliberative and communicative process that helps people formulate and communicate preferences for future medical care in the event of mental incapacity. Advance directives are mechanisms for communicating and/or documenting ACP, and are either instructional (e.g. statement of treatment preferences in living wills) or proxy types (e.g. appointment of another person to speak on the patients behalf). ACP discussions between patients and health care providers and patient-orientated educational ACP materials often ignore insights from 2 related activities, health promotion and human information processing. More effective ACP should occur with greater attention to the concepts of stages of change and self-efficacy, the Health Belief Model, and the necessary requisites for cognitive integration.

Trends in death associated with pediatric dental sedation and general anesthesia.

Inadequate access to oral health care places children at risk of caries. Disease severity and inability to cooperate often result in treatment with general anesthesia (GA). Sedation is increasingly popular and viewed as lower risk than GA in community settings. Currently, few data are available to quantify pediatric morbidity and mortality related to dental anesthesia.

IRB perspectives on the return of individual results from genomic research

Purpose:Return of individual research results from genomic studies is a hotly debated ethical issue in genomic research. However, the perspective of key stakeholders—institutional review board (IRB) professionals—has been missing from this dialogue. This study explores the positions and experiences of IRB members and staff regarding this issue.Methods:In-depth interviews with 31 IRB professionals at six sites across the United States.Results:IRB professionals agreed that research results should be returned to research participants when results are medically actionable but only if the participants want to know the results. Many respondents expected researchers to address the issue of return of results (ROR) in the IRB application and informed-consent document. Many respondents were not comfortable with their expertise in genomics research and only a few described actual experiences in addressing ROR. Although participants agreed that guidelines would be helpful, most were reticent to develop them in isolation. Even where IRB guidance exists (e.g., Clinical Laboratory Improvement Act (CLIA) lab certification required for return), in practice, the guidance has been overruled to allow ROR (e.g., no CLIA lab performs the assay).Conclusion:An IRB–researcher partnership is needed to help inform responsible and feasible institutional approaches to returning research results.Genet Med 2012:14(2):215–222

Chinese HIV-positive patients and their healthcare providers: contrasting Confucian versus Western notions of secrecy and support.

In this qualitative study, 29 HIV-positive, Chinese patients reported highly favorable impressions of their healthcare providers, who were seen as providing important medical-related, financial, and emotional support. Generally, the patient-provider relationship positively impacted the participants and their ability to maintain their health and was especially critical when patients were isolated from familial sources of support due to intense AIDS stigma. Often family members were informed of an HIV diagnosis before the patient, revealing tensions between Confucian principles of collectivism and familial authority and increasingly prevalent Western ideals of individual autonomy and the privileged status of personal health information.