Improving the use of hospice services in nursing homes: a randomized controlled trial.

CONTEXT: Hospice care may improve the quality of end-of-life care for nursing home residents, but hospice is underutilized by this population, at least in part because physicians are not aware of their patients' preferences. OBJECTIVE: To determine whether it is possible to increase hospice utilization and improve the quality of end-of-life care by identifying residents whose goals and preferences are consistent with hospice care. DESIGN, SETTING, AND PARTICIPANTS: Randomized controlled trial (December 2003-December 2004) of nursing home residents and their surrogate decision makers (N=205) in 3 US nursing homes. INTERVENTION: A structured interview identified residents whose goals for care, treatment preferences, and palliative care needs made them appropriate for hospice care. These residents' physicians were notified and asked to authorize a hospice informational visit. MAIN OUTCOME MEASURES: The primary outcome measures were (1) hospice enrollment within 30 days of the intervention and (2) families' ratings of the quality of care for residents who died during the 6-month follow-up period. RESULTS: Of the 205 residents in the study sample, 107 were randomly assigned to receive the intervention, and 98 received usual care. Intervention residents were more likely than usual care residents to enroll in hospice within 30 days (21/107 [20%] vs 1/98 [1%]; P<.001 [Fisher exact test]) and to enroll in hospice during the follow-up period (27/207 [25%] vs 6/98 [6%]; P<.001). Intervention residents had fewer acute care admissions (mean: 0.28 vs 0.49; P = .04 [Wilcoxon rank sum test]) and spent fewer days in an acute care setting (mean: 1.2 vs 3.0; P = .03 [Wilcoxon rank sum test]). Families of intervention residents rated the resident's care more highly than did families of usual care residents (mean on a scale of 1-5: 4.1 vs 2.5; P = .04 [Wilcoxon rank sum test]). CONCLUSION: A simple communication intervention can increase rates of hospice referrals and families' ratings of end-of-life care and may also decrease utilization of acute care resources.

Making difficult decisions about hospice enrollment: what do patients and families want to know?

OBJECTIVES: To define patients' and families' priorities for information about hospice. DESIGN: Cross-sectional interview. SETTING: Urban, not-for-profit, Medicare-certified hospice. PARTICIPANTS: Patients and families recruited from consecutive hospice information visits. MEASUREMENTS: Understanding of hospice, assessment of the relative importance of eight categories of information (by direct rating and ranking tasks), and nurse observation of shared decision making between patient and family (5-point scale). RESULTS: Interviews were conducted with 237 patients and families at a hospice information visit. Forty percent (n=94) said that they knew anything about hospice. Most often, family members made the enrollment decision (n=132, 57%). Of the eight categories of information, patients and families placed the greatest importance on visit frequency (n=143, 60%), payment for hospice (n=140, 59%), and the practical help that hospice provides (n=123, 52%). Principal component factor analysis reduced the categories to three distinct factors reflecting concerns related to impending death, practical support, and changes from established patterns of care. CONCLUSION: Most patients and families who are referred for a hospice information visit know little about hospice and have substantial information needs. Referring physicians and hospice teams may be able to better support hospice enrollment decisions by anticipating common priorities for information.

What is the risk of distress in palliative care survey research?

To determine whether caregivers believe that interviews about end-of-life care are distressing and to identify patient and respondent characteristics associated with an increased risk of distress, distress was assessed in four studies that used family interviews. The setting was four Medicare certified hospice organizations, the University of Pennsylvania Memory Disorders Clinic, and two nursing homes, and participants included 296 family members of seriously ill or recently deceased patients. For three of the studies, respondents described their distress on a 5-point scale. Distress was reported as either present or absent in the fourth study. Sixty-four respondents (22%) reported experiencing distress. Intensity of distress was higher for younger respondents (Spearman rho -0.16; P=0.013), younger patients (Spearman rho -0.28; P < 0.001), and family members of patients with cancer (mean 0.55 vs. 0.24; Rank sum test P < 0.001). In a multivariable model, after adjusting for study population, younger patient age and cancer diagnosis were independently associated with the severity of distress. Sensitive questions about death and dying are unlikely to cause distress for family members. Although the likelihood of distress is low overall, investigators recruiting from these populations may improve the research by incorporating methods to assess and manage distress.

How should clinicians describe hospice to patients and families?

OBJECTIVES: To describe hospice enrollment from the perspective of bereaved family members and to identify information about hospice that would encourage patients and families to enroll sooner. DESIGN: Cross-sectional interviews. SETTING: Three Medicare-certified hospice organizations. PARTICIPANTS: One hundred family members of 100 patients who died in hospice. MEASUREMENTS: Semistructured interviews assessed prior knowledge of hospice, patients' and physicians' involvement in the enrollment process, features of hospice that motivated enrollment, and features that patients and families wished they had learned about sooner. RESULTS: Almost all family members (n=92) and patients (n=71) knew about hospice before the patient's illness. Almost half the patients (n=44) were not involved at all in the hospice enrollment decision. The patient's physician (n=51) or the patient or family (n=34) initiated most hospice discussions, but patients and families usually obtained information about hospice from a hospice representative (n=75) rather than from the patient's physician (n=22). Family members identified several kinds of information about hospice that were particularly helpful in deciding whether to enroll and described several aspects of hospice that they wished they had known about sooner. CONCLUSION: Many patients and families learn about hospice from someone other than the patient's physician, and most learn about valuable hospice features and services only after enrollment. By providing more information about hospice earlier in the illness course, clinicians may be able to facilitate more-informed and more-timely decisions about hospice enrollment.

Are depressed patients more likely to share health care decisions with others?

OBJECTIVES: To determine whether psychological variables, particularly depression, influence patients' willingness to share medical decisions with family members or friends. DESIGN: Cross-sectional interviews. SETTING: Oncology and general geriatrics outpatient clinics of an urban VA medical center. PARTICIPANTS: Ninety-five patients with a Charlson comorbidity index score greater than 5. MEASUREMENTS: Subjects described the way that they make health care decisions with friends or family as a dichotomous variable ("shared" versus "not shared") and as a 5-point ordinal variable (the degree to which they share decisions). Patients also completed the 15-item version of the Geriatric Depression Scale (GDS), the Global Distress Index of the Memorial Symptom Assessment Scale, and selected tests of cognitive function and health literacy. RESULTS: Patients with a GDS score higher than 5 were more likely to share decision-making (16/26 versus 26/69; odds ratio 2.58; p = 0.040), as were patients who were married (23/35 versus 19/60; odds ratio 3.63; p = 0.001). In multivariable regression models, a short form GDS score higher than 5 was independently associated with a willingness to share decision with others. CONCLUSION: These results suggest that depression may have a clinically significant influence on patients' willingness to share health care decisions with others. Health care providers should be alert to this possibility, particularly when the decision at hand is significant.

Caregivers' satisfaction with hospice care in the last 24 hours of life.

The goals of this study were to identify elements of care that contributed to positive and negative perceptions of hospice care in the last 24 hours of life, and to define patient and family characteristics that are associated with satisfaction with care during this difficult period. Surveys were sent to 207 primary caregivers, and 112 surveys were returned. This study reports four findings that elucidate the factors that make family members more or less satisfied with the care that their loved one received during the last day of life, and how satisfaction with this period of care should be measured.

Patients' willingness to participate in symptom-related and disease-modifying research: results of a research screening initiative in a palliative care clinic.

BACKGROUND: The growth of cancer symptom management research has been limited by challenges of slow recruitment and under-enrollment. One potential solution to this problem is the use of screening questions that identify patients who are interested in participating in research. The goal of this study was to evaluate this strategy in patients with cancer. METHODS: Two screening questions (for symptom management research and disease-modifying research) were integrated into the intake process of the palliative care clinic of an urban Veteran's Administration medical center. A chart review was conducted to extract patients' reported willingness to be recruited for research, explanations for their responses, demographic data, Memorial Symptom Assessment Scale Global Distress Index (GDI) subscale scores, and Eastern Cooperative Oncology Group performance score. RESULTS: Charts were reviewed for the first 100 patients seen for a palliative care clinic visit, 86 of whom had cancer. Patients were less likely to be interested in symptom-related research than in disease-modifying research (32 of 86 [37%] vs. 46 of 86 [54%]; sign test, P = 0.009). Patients' interest in each type of research was associated moderately (kappa = 0.41; P < 0.001). Independent predictors of interest in symptom management research included younger age, white race, and a lower GDI symptom distress score. Independent predictors of interest in disease-modifying research included only younger age and white race. CONCLUSIONS: Screening questions may be useful in identifying patients who are willing to be recruited for research. However, further study is needed to evaluate this process in other populations, as well as to determine whether screening questions introduce selection bias in the recruitment process.

Surveys to assess satisfaction with end-of-life care: does timing matter?

The goals of this study were to determine whether post-death surveys of family members cause more distress if they are administered closer in time to the patient's death, and whether family members are less likely to respond to earlier surveys. Caregivers of hospice patients were randomly assigned to receive a survey at 2 weeks (n = 107) or at 6 weeks (n = 100) after the patient's death. Response rates and self-reported distress experienced in completing the survey were recorded. There were no differences in self-ratings of distress between 2- and 6-week surveys, and response rates were identical (2-week: 54%; 6-week: 54%). Distress and response rate do not appear to be influenced by the timing of data collection, even when surveys are administered very soon after death.