Christine Nelson

Family decision-making to withdraw life-sustaining treatments from hospitalized patients.

BACKGROUND With a national trend toward less aggressive treatment of hospitalized terminally ill patients, families increasingly participate in decisions to withdraw life-sustaining treatment. Although prior research indicates decision making is stressful for families, there have been no psychometric reports of actual stress levels and few discussions of the reasoning used by families compared to clinicians in reaching the decision. OBJECTIVES The purpose of this study was to assess levels of family stress associated with decisions to withdraw life-sustaining treatments, to assess factors that affected stress, and to compare families and clinicians on their reasoning about the decision. METHODS Data were collected from hospital decedent charts, family members of decedents, and clinicians who cared for decedents. Data from families were collected in individual interviews, shortly after decedent death and 6 months later, using psychometric measures and semi-structured interview questions. Clinicians were interviewed once shortly following patient death. RESULTS Family stress associated with the withdraw decision was high immediately following the death of the decedent and, while it decreased over time, remained high a half a year later. Several factors affected stress; most notably, stress was highest in the absence of patient advance directives. In reaching the decision, both families and clinicians prioritized what the patient would want, although families, more strongly than clinicians, endorsed doing everything medically possible to prolong the patients life. CONCLUSIONS Findings add compelling evidence for the power of advance directives, whether written or verbal, to reduce the stress associated with family decision-making.

The IPR inventory: development and psychometric characteristics.

The purpose of this study was to develop, validate, and norm a measure of dimensions of interpersonal relationships that are salient to nursing: social support, reciprocity, and conflict. The selection of these concepts was guided by social exchange and equity theories. In the first phase of the study, 44 respondents were interviewed to provide narrative data from which to develop items so that items would be grounded in lived experience. Content validity of items was judged by a panel of 11 experts. The revised 39-item instrument was tested in successive steps with a total of 340 students, patients, and community residents for reliability and validity, including internal consistency reliability, test-retest reliability, factor analysis, and three forms of validity assessment (theory testing, contrasted groups, and multitrait-multimethod comparison). The three subscales of social support, reciprocity, and conflict demonstrated repeated internal consistency and test-retest reliability. Strong evidence of construct validity was demonstrated for the social support and the conflict subscales; validity of the reciprocity subscale was equivocal.

Use of qualitative methods to enhance content validity

Qualitative methods to enhance the content validity of a new psychometric measure are described in this report. Qualitative data collected in interviews with respondents familiar with a concept helps to enrich and extend what is known about the concept and serves as a valuable source of items. Qualitative data were collected from 44 respondents on aspects of interpersonal relationships, including social support, reciprocity, and conflict. Data were used to generate items for the new measure, the Interpersonal Relationship Inventory. Content validity of items and of scales was judged by a panel of experts, and initial psychometric properties of items were evaluated before developing the final measure.

Use of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm program in the hospice setting.

BACKGROUND The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm Program was designed to ensure the full range of patient treatment preferences are honored throughout the health care system. Data are lacking about the use of POLST in the hospice setting. OBJECTIVE To assess use of the POLST by hospice programs, attitudes of hospice personnel toward POLST, the effect of POLST on the use of life-sustaining treatments, and the types of treatments options selected by hospice patients. DESIGN A telephone survey was conducted of all hospice programs in three states (Oregon, Wisconsin, and West Virginia) to assess POLST use. Staff at hospices reporting POLST use (n = 71) were asked additional questions about their attitudes toward the POLST. Chart reviews were conducted at a subsample of POLST-using programs in Oregon (n = 8), West Virginia (n = 5), and Wisconsin (n = 2). RESULTS The POLST is used widely in hospices in Oregon (100%) and West Virginia (85%) but only regionally in Wisconsin (6%). A majority of hospice staff interviewed believe the POLST is useful at preventing unwanted resuscitation (97%) and at initiating conversations about treatment preferences (96%). Preferences for treatment limitations were respected in 98% of cases and no one received unwanted cardiopulmonary resuscitation (CPR), intubation, intensive care, or feeding tubes. A majority of hospice patients (78%) with do-not-resuscitate (DNR) orders wanted more than the lowest level of treatment in at least one other category such as antibiotics or hospitalization. CONCLUSIONS The POLST is viewed by hospice personnel as useful, helpful, and reliable. It is effective at ensuring preferences for limitations are honored. When given a choice, most hospice patients want the option for more aggressive treatments in selected situations.

Developing a Network of Community Health Centers With a Common Electronic Health Record: Description of the Safety Net West Practice-based Research Network (SNW-PBRN)

In 2001, community health center (CHC) leaders in Oregon established an organization to facilitate the integration of health information technology, including a shared electronic health record (EHR), into safety net clinics. The Oregon Community Health Information Network (shortened to OCHIN as other states joined) became a CHC information technology hub, supporting a network-wide EHR with one master patient index, now linked across >40 safety net organizations serving >900,000 patients with nearly 800,000 distinct CHC visits. Recognizing the potential of OCHIN′s multiclinic network and comprehensive EHR database for conducting safety net-based research, OCHIN leaders and local researchers formed the Safety Net West practice-based research network (PBRN). The Safety Net West “community- based laboratory,” based at OCHIN, is positioned to become an important resource for many studies including: evaluation of the real-time impact of health care reform on uninsured populations; development of new models of primary care delivery; dissemination and translation of interventions from other EHR-based systems (e.g., Kaiser Permanente) into the community health setting; and analyses of factors influencing disparities in health and health care access. We describe the founding of Safety Net West, its infrastructure development, current projects, and the future goals of this community-based PBRN with a common EHR.

Family Decision Making in Foregoing Life-Extending Treatments:

Families generally serve as surrogate decision makers for hospitalized dying patients who are unable to express their own decisions regarding life-prolonging treatments. The authors interviewed family members whose relatives died in the hospital following the withdrawal of aggressive medical treatments. Interviews were at two time periods: at 1 and 6 months post-patient death. Study data indicated a core set of phases which family members experienced in the process of arriving at the decision to withdraw treatment: recognition of futility, coming to terms, shouldering the surrogate role, and facing the question. At 6 months post decision, families reflected on the need for corroborating evidence that they had made the right decision, which the authors term seeking a triangulation of certainty. Advance directives and forthright communication from clinicians were two factors that most helped family members feel more positive about events.

The Interpersonal Relationship Inventory: continued psychometric evaluation.

For norm-referenced measures to be useful in social-behavioral research, investigators who develop measures face several psychometric challenges, including: (a) adequate domain specification; (b) adequate initial evidence of reliability and validity; and (c) ongoing evidence of psychometric quality. The Interpersonal Relationship Inventory (IPRI) was developed in response to gaps in measurement of social relationships, and contributed scales for reciprocity and conflict to a measure of social support. For the IPRI, the first two points were addressed during the period of instrument development. The measure now has been in use for 4 years. This article reports evidence addressing the third challenge: ongoing evidence of psychometric quality. Findings from 19 studies using the IPRI provide compelling evidence for internal consistency reliability and construct validity of the scales.

The ADVANCE network: accelerating data value across a national community health center network

The ADVANCE (Accelerating Data Value Across a National Community Health Center Network) clinical data research network (CDRN) is led by the OCHIN Community Health Information Network in partnership with Health Choice Network and Fenway Health. The ADVANCE CDRN will ‘horizontally’ integrate outpatient electronic health record data for over one million federally qualified health center patients, and ‘vertically’ integrate hospital, health plan, and community data for these patients, often under-represented in research studies. Patient investigators, community investigators, and academic investigators with diverse expertise will work together to meet project goals related to data integration, patient engagement and recruitment, and the development of streamlined regulatory policies. By enhancing the data and research infrastructure of participating organizations, the ADVANCE CDRN will serve as a ‘community laboratory’ for including disadvantaged and vulnerable patients in patient-centered outcomes research that is aligned with the priorities of patients, clinics, and communities in our network.

Lessons Learned and Challenges Ahead: Report from the OCHIN Safety Net West Practice-based Research Network (PBRN)

Introduction: We recently completed a strategic planning process to better understand the development of our 5-year-old practice-based research network (PBRN) and to identify gaps between our original vision and current progress. Although many of our experiences are not new to the PBRN community, our reflections may be valuable for those developing or reshaping PBRNs in a changing health care environment. Lessons Learned: We learned about the importance of (1) shared vision and commitment to a unique patient population; (2) strong leadership, mentorship, and collaboration; (3) creative approaches to engaging busy clinicians and bridging the worlds of academia and community practice; and (4) harnessing data from electronic health records and navigating processes related to data protection, sharing, and ownership. Challenges Ahead: We must emphasize research that is timely, relevant, and integrated into practice. One model supporting this goal involves a broader partnership than was initially envisioned for our PBRN—one that includes clinicians, researchers, information architects, and quality improvement experts partnering to develop an innovation center. This center could facilitate development of relevant research questions while also addressing “quick-turnaround” needs. Conclusions: Gaps remain between our PBRN′s initial vision and current reality. Closing these gaps may require future creativity in building partnerships and finding nontraditional funding sources.

Strategies and opportunities to STOP colon cancer in priority populations: pragmatic pilot study design and outcomes

BackgroundColorectal-cancer is a leading cause of cancer death in the United States, and Latinos have particularly low rates of screening. Strategies and Opportunities to STOP Colon Cancer in Priority Populations (STOP CRC) is a partnership among two research institutions and a network of safety net clinics to promote colorectal cancer screening among populations served by these clinics. This paper reports on results of a pilot study conducted in a safety net organization that serves primarily Latinos.MethodsThe study assessed two clinic-based approaches to raise rates of colorectal-cancer screening among selected age-eligible patients not up-to-date with colorectal-cancer screening guidelines. One clinic each was assigned to: (1) an automated data-driven Electronic Health Record (EHR)-embedded program for mailing Fecal Immunochemical Test (FIT) kits (Auto Intervention); or (2) a higher-intensity program consisting of a mailed FIT kit plus linguistically and culturally tailored interventions delivered at the clinic level (Auto Plus Intervention). A third clinic within the safety-net organization was selected to serve as a passive control (Usual Care). Two simple measurements of feasibility were: 1) ability to use real-time EHR data to identify patients eligible for each intervention step, and 2) ability to offer affordable testing and follow-up care for uninsured patients.ResultsThe study was successful at both measurements of feasibility. A total of 112 patients in the Auto clinic and 101 in the Auto Plus clinic met study inclusion criteria and were mailed an introductory letter. Reach was high for the mailed component (92.5% of kits were successfully mailed), and moderate for the telephone component (53% of calls were successful completed). After exclusions for invalid address and other factors, 206 (109 in the Auto clinic and 97 in the Auto Plus clinic) were mailed a FIT kit. At 6 months, fecal test completion rates were higher in the Auto (39.3%) and Auto Plus (36.6%) clinics compared to the usual-care clinic (1.1%).ConclusionsFindings showed that the trial interventions delivered in a safety-net setting were both feasible and raised rates of colorectal-cancer screening, compared to usual care. Findings from this pilot will inform a larger pragmatic study involving multiple clinics.Trial registrationClinicalTrial.gov: NCT01742065