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 clinician's 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.

Evaluating a palliative care intervention for veterans: challenges and lessons learned in a longitudinal study of patients with serious illness.

CONTEXT: Longitudinal studies examining care for seriously ill patients are needed to understand patients' experience of illness, evaluate interventions, and improve quality of care. Unfortunately, such studies face substantial methodological challenges. OBJECTIVES: This article describes such challenges and the strategies used to overcome them in a successfully implemented palliative care intervention trial for veterans. METHODS: Veterans admitted with a physician-estimated moderate-to-high one-year mortality risk were enrolled and followed up to three years, until death or study completion. Study protocols, procedures, and process data were intermittently analyzed to identify and develop strategies to address issues affecting study enrollment and interview completion rates. RESULTS: Of 561 patients who were eligible, 400 (71%) enrolled in the study; 357 (87%) alive at the end of Month 1 completed interviews; and 254 (88%) alive at Month 6 completed interviews. Of the 208 patients who died during the study and had identified a caregiver, we were able to conduct an after-death interview with 154 (74%) caregivers. A variety of strategies, such as systematic tracking and check-in calls, minimizing respondent burden, and maintaining interviewer-respondent dyads over time, were used to maximize enrollment rates, data collection, and retention. CONCLUSION: These data demonstrate that the use of diverse strategies and flexibility with regard to study protocols can result in successful recruitment, data collection, and retention of participants with serious illness. They thus show that longitudinal research can be successfully implemented with this population to evaluate interventions and examine patient experiences.

The intersection of need and opportunity: assessing and capitalizing on opportunities to expand hospital-based palliative care services.

BACKGROUND: To develop and grow most effectively, palliative care programs must consider how best to align their mission with that of their institution. To do so, programs must identify their institutional mission and needs, what palliative care can do to address those needs given available resources, and how the palliative care team can measure and document its value. Such an approach encourages the palliative care team to think strategically and to see themselves and their service as a solution to issues and concerns within the institution. It also helps a palliative care team decide which, among many potential opportunities and possible initiatives, is the one most likely to be supported by the institution and have a recognized and significant impact. SUBJECTS AND METHODS: We present five case studies to demonstrate how successful programs identify and address institutional needs to create opportunities for palliative care program growth. These case studies can serve as models for other programs seeking to develop or expand their palliative care services.

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.

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. Wagner's 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.

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

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 (Cronbach's 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.

Negotiating end-of-life decision making: a comparison of Japanese and U.S. residents' approaches.

PURPOSE: To compare Japanese and U.S. resident physicians' attitudes, clinical experiences, and emotional responses regarding making disclosures to patients facing incurable illnesses. METHOD: From September 2003 to June 2004, the authors used a ten-item self-administered anonymous questionnaire in a cross-sectional survey of 103 internal medicine residents at two U.S. sites in Los Angeles, California, and 244 general medical practice residents at five Japanese sites in Central Honshu, Kyushu, Okinawa, Japan. RESULTS: The Japanese residents were more likely to favor including the family in disclosing diagnosis (95% versus 45%, p<.001) and prognosis (95% versus 51%, p<.001) of metastatic gastric cancer. Of residents who favored diagnostic or prognostic disclosure to both the patient and family, Japanese residents were more likely to prefer discussion with the family first. Trainees in Japan expressed greater uncertainty about ethical practices related to disclosure of diagnosis or prognosis. Many Japanese and U.S. residents indicated that they had deceived a patient at the request of a family (76% versus 18 %, p<.001), or provided nonbeneficial care (56% versus 72%, p<.05), and many expressed guilt about these behaviors. CONCLUSIONS: The residents' approaches to end-of-life decision making reflect known cultural preferences related to the role of patients and their families. Although Japanese trainees were more likely to endorse the role of the family, they expressed greater uncertainty about their approach. Difficulty and uncertainty in end-of-life decision making were common among both the Japanese and U.S. residents. Both groups would benefit from ethical training to negotiate diverse, changing norms regarding end-of-life decision making.

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.

End-of-life education using the dramatic arts: the Wit educational initiative.

Caring for dying persons requires skill in interpersonal aspects of care, which may be difficult to teach using conventional educational methods. The Pulitzer Prize-winning play Wit relates the personal story of a patient dying from metastatic ovarian cancer and describes the protagonist's experience with medical care from diagnosis to death. Members of the Department of Medicine at the VA Greater Los Angeles Health care System and the David Geffen School of Medicine, UCLA developed a program that utilized Wit to educate medical students, residents, and staff providers in the humanistic elements of end-of-life care. Between February 2000 and January 2002 the Wit Educational Initiative organized on-site readings of Wit by local professional theatre companies at medical centers throughout the United States and Canada, inviting medical students, housestaff, and other providers to attend the play followed by structured discussions of the play's themes. The Initiative provided extensive support for potential program sites including publicity, providing a handbook with a step-by-step guide to organizing local programs, and feedback of postperformance survey results. The Initiative was successful in organizing performances at 32 out of 54 (59%) medical centers where a local production of Wit was identified. Survey respondents confirmed the appeal, emotional impact, and perceived relevance of drama in end-of-life education. An educational program using theatre to educate trainees in the humanistic aspects of end-of-life care was enthusiastically received by medical schools and rated highly by attendees.

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. DESIGN: From December 1999 to March 2000, hospices were surveyed about selected admission practices, and their responses were linked to the 1999 California Office of Statewide Health Planning and Development's Home and Hospice Care Survey that describes organizational characteristics of California hospices. SETTING: California statewide. PARTICIPANTS: One hundred of 149 (67%) operational licensed hospices. MEASUREMENTS: Whether hospices admit patients who lack a caregiver; would not forgo hospital admissions; or are receiving total parenteral nutrition (TPN), tube feedings, radiotherapy, chemotherapy, or transfusions. RESULTS: Sixty-three percent of hospices restricted admission on at least one criterion. A significant minority of hospices would not admit patients lacking a caregiver (26%). Patients unwilling to forgo hospitalization could not be admitted to 29% of hospices. Receipt of complex medical care, including TPN (38%), tube feedings (3%), transfusions (25%), radiotherapy (36%), and chemotherapy (48%), precluded admission. Larger program size was significantly associated with a lower likelihood of all admission practices except restricting the admission of patients receiving TPN or tube feedings. Hospice programs that were part of a hospice chain were less likely to restrict the admission of patients using TPN, radiotherapy, or chemotherapy than were freestanding programs. CONCLUSION: Patients who are receiving complex palliative treatments could face barriers to hospice enrollment. Policy makers should consider the clinical capacity of hospice providers in efforts to improve access to palliative care and more closely incorporate palliation with other healthcare services.

Charity for the dying: who receives unreimbursed hospice care?

OBJECTIVES: Many deaths occur among persons without insurance coverage for hospice care. We examined the patient and agency characteristics associated with receiving unreimbursed hospice care in a national survey. RESULTS: We examined the receipt of unreimbursed care using the 1998 National Home and Hospice Care Survey (NHHCS) discharge dataset. Overall, only 3% of hospice patients received unreimbursed care. Because 98% of older adults are eligible for Medicare, we stratified multivariate analysis on age greater or less than 65 years. Among persons less than 65 years of age, younger, nonwhite persons were more likely to receive unreimbursed care, as were persons with cancer. Agencies providing unreimbursed care to persons over the age of 65 years were more likely to be not-for-profit and freestanding. CONCLUSION: Recipients of unreimbursed hospice care are demographically similar to the uninsured, and whether uninsured persons receive unreimbursed hospice care depends on clinical and agency organizational factors related to the motivation to provide unreimbursed care.

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.