Kenneth E. Rosenfeld

End-of-life decision making: a qualitative study of elderly individuals.

OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals.DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective.SETTING: A senior center and a multilevel retirement community in Los Angeles.PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making.MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a “full life.” Decisionmaking authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient’s interests), and shifted from physician to family as the patient’s prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions.CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients’ and families’ goals for care.

Quality Indicators for Palliative and End-of-Life Care in Vulnerable Elders

The literature summaries that support each indicator judged valid by the expert panel are described.

Hospice admission practices: Where does hospice fit in the continuum of care?

Objectives: To evaluate selected hospice admission practices that could represent barriers to hospice use and the association between these admission practices and organizational characteristics.

Cash and Compassion: Profit Status and the Delivery of Hospice Services

OBJECTIVES To evaluate the relationship of hospice profit status to patient selection and service delivery. DESIGN We analyzed responses to the 1997 California Office of Statewide Health Planning and Development (OSHPD) annual home care and hospice survey. Outcomes included the percentages of patients with noncancer diagnoses, referred from long-term care, and with government payers; average length of stay (LOS); the intensity and skill mix of nursing services; and potential availability of chemotherapy and radiotherapy. Reduced models controlled for facility type, profit status, urbanicity, and patient-days. Complete models additionally controlled for patient gender, age, race/ethnicity, diagnosis, referral source, and primary reimbursement source. PARTICIPANTS All 176 licensed California hospices in 1997. RESULTS We report comparisons of for-profit and not-for-profit hospices as the absolute difference in percentage points between outcomes (e.g., a difference of 40% vs. 50% is reported as a 10 percentage point difference). In reduced models, for-profit hospices reported 17 percentage points more discharges with noncancer diagnoses, 15 percentage points more long-term care referrals, and 8 percentage points more patients with government payers. Average LOS did not differ by profit status. In reduced models, for-profit hospices delivered 0.20 more daily nursing visits on average; this difference was attributable to patient characteristics. The ratio of skilled to total nursing visits was 11 percentage points lower for for-profit hospices compared to not-for-profit hospices in reduced models (7 in complete models). Profit status was unrelated to the potential availability of chemotherapy and radiotherapy. CONCLUSION For-profit hospices compared to not-for profit hospices serve a higher percentage of persons with noncancer diagnoses, residents of long-term care, and persons with government insurance. Differences in patterns of nursing services among hospices were related to patient characteristics. The potential availability of complex palliative services did not differ by profit status.

Provider Communication and Patient Understanding of Life-Limiting Illness and Their Relationship to Patient Communication of Treatment Preferences

Medical decision making in the context of serious illness ideally involves a patient who understands his or her condition and prognosis and can effectively formulate and communicate his or her care preferences. To understand the relationships among these care processes, we analyzed baseline interview data from veterans enrolled in a randomized controlled trial of a palliative care intervention. Participants were 400 inpatient veterans admitted with a physician-estimated risk of one-year mortality more than 25%; 260 (65%) had cancer as the primary diagnosis. Patients who believed that they had a life-limiting illness (89% of sample) reported that their provider had communicated this to them more frequently than those who did not share that belief (78% vs. 22%, P<0.001). Over half (53%) of the participants reported discussing their care preferences with their providers and 66% reported such discussions with their family; 35% had a living will. In multivariate analysis, greater functional impairment was associated with patients having discussed their care preferences with providers (P<0.05), whereas patient understanding of prognosis (P<0.05), better quality of life (P<0.01), and not being African American (P<0.05) were associated with patients having discussed their care preferences with family; higher education (P<0.001), and not being African American (P<0.01) were associated with having a living will. Patients with poor understanding of prognosis are less likely to discuss care preferences with family members, suggesting the importance of provider communication with patients regarding prognosis. Because functional decline may prompt physicians to discuss prognosis with patients, patients with relatively preserved function may particularly need such communication.

Approaching patients and family members who hope for a miracle.

A clinical problem may arise when caring for patients or their surrogates who prefer continued aggressive care based on the belief that a miracle will occur, despite a clinicians belief that further medical treatment is unlikely to have any meaningful benefit. An evidence-based approach is provided for the clinician by breaking this complex clinical problem into a series of more focused clinical questions and subsequently answering them through a critical appraisal of the existing medical literature. Belief in miracles is found to be common in the United States and is an important determinant of how decisions are made for those with advanced illness. There is a growing amount of evidence that suggests end-of-life outcomes improve with the provision of spiritual support from medical teams, as well as with a proactive approach to medical decision making that values statements given by patients and family members.

Palliative care management: a Veterans Administration demonstration project.

As part of a Veterans Health Administration (VA) commitment to improve end-of-life care the VA Greater Los Angeles Healthcare System (GLA) implemented Pathways of Caring, a 3-year demonstration project targeting patients with inoperable lung cancer and advanced heart failure and chronic lung disease. The program utilized case-finding for early identification of poor-prognosis patients, interdisciplinary palliative assessment, and intensive nurse care coordination to optimize symptom management, continuity and coordination of services across providers and care settings, and support for families. Program evaluation used patient and family surveys as well as reviews of medical records and administrative databases to assess processes and outcomes of care. Despite significant programmatic challenges including organizational instability and evaluation design issues, the program achieved measurable success including high rates of advance care planning, hospice enrollment, and death at home, and low end-of-life hospital and Intensive Care Unit (ICU) use. As a result of its success, the program will be expanded and its care model extended institution-wide.

The VA Ostomy Health-Related Quality of Life Study: objectives, methods, and patient sample

ABSTRACT Objective: To present the design and methods of a multisite study of health-related quality of life (HR-QOL) in veterans living with ostomies. Research design and methods: Veterans from Tucson, Indianapolis, and Los Angeles VA Medical Centers were surveyed using the validated City of Hope ostomy-specific tool (mCOH-QOL-Ostomy) and the SF‐36V. Cases (ostomates) had a major gastrointestinal procedure that required an intestinal stoma, while controls had similar procedures for which an ostomy was not required. Ostomy subjects were recruited for four focus groups in each of two sites divided by ostomy type (colostomy versus ileostomy) and overall mCOH-QOL-Ostomy HR-QOL score (highest versus lowest quartile). The focus groups further evaluated barriers, concerns, and adaptation methods and skills. Main outcome measures: This report presents recruitment results, reliability of survey instruments, and demographic characteristics of the sample. Results: The overall response (i.e., recruitment) rate across all sites was 48% and by site was 53%, 57%, and 37%, respectively ( p < 0.001). Internal consistency reliability estimates indicated that both instruments remain reliable in this population (Cronbachs alpha for HR‐QOL domains/scales: 0.71–0.96). Cases and controls were similar in demographic characteristics. Proportions of minority subjects matched projections from the site patient populations. Subjects with ostomies had significantly longer time since surgery than controls ( p < 0.001). Focus groups were comprised of two to six subjects per group and demonstrated racial diversity at the Los Angeles site. Conclusions: The unique design of our study of VA patients with ostomies is an illustration of a successful mixed methods approach to HR‐QOL research. We collected meaningful quantitative and qualitative data that will be used in the development of new approaches to care that will lead to improved functioning and well-being in persons living with ostomies. Subsequent reports will provide the results of this research project.

Accommodating ethnic diversity: a study of California hospice programs.

Background:Studies have confirmed ethnic disparities in the use of hospice services and identified barriers that minorities face in accessing care. Objectives:We sought to determine whether hospices provide services that might affect minority participation. Research Design:We surveyed California hospices to determine whether programs use diverse health care providers and volunteers, offer translation, diverse spiritual care, or outreach materials and whether they plan to expand such services. Linking the data to the California Office of Statewide Health Planning and Development annual home care and hospice survey and 2000 US Census, we used multivariate linear regression to evaluate the relationship of program characteristics (profit status, size, chain/freestanding status, urban/rural location, and proportion of nonwhite residents) to services that might affect minority participation. Subjects:One hundred of 149 programs that we surveyed responded. Results:Many programs offer translation (81%), diverse providers (63%) and volunteers (64%), and culturally diverse spiritual services (52%). Few (21%) were conducting outreach, but 23/25 programs expanding services reported plans to improve outreach. In multivariate models adjusted for program size, chain status, profit status, urban/rural location, proportion of nonwhite residents, we found that larger hospices and those in ethnically diverse zip codes were more likely to offer such services. Larger hospices are more likely to report expanding such services. Conclusions:Many hospices are making efforts to accommodate ethnically diverse patients, but a substantial number are not. Culturally appropriate care and outreach should be addressed in efforts to improve the acceptability and experience of hospice care among minorities.

Pain and palliative medicine.

Severe pain is highly prevalent, with rates of 40% to 70% in patients with advanced cancer, liver disease, heart failure, human immunodeficiency virus, and renal failure. Wide variations in pain assessment and reporting methods and the measurement of multiple symptoms should be addressed in future studies. Regarding psychological approaches, determining whether hypnotherapy or other individual psychotherapeutic interventions reduce pain and/or psychological distress in a palliative care population is difficult. Interest is increasing in the concept of demoralization syndromes and the role of posttraumatic stress disorder in modulating responses to pain at the end of life. We review evidence from multiple studies that the use of rehabilitative therapy improves functional status and pain control among patients with advanced cancer, and we raise the possibility that rehabilitation therapy will be helpful in patients with other advanced diseases. We summarize ongoing clinical trials of electronic order sets, clinical care pathways, and care management pathways to improve pain management in palliative care. Wagners Chronic Illness Model provides a way of analyzing how healthcare systems can be changed to provide adequate and continuing pain management in palliative care. Much work remains to ensure that pain is recognized, treated, and monitored effectively.