The median is not the (only) message.
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Communication↗
Biomedical subjects
David Casarett
Publications and source records attributed to David Casarett.
Are patient preferences for life-sustaining treatment really a barrier to hospice enrollment for older adults with serious illness?
OBJECTIVES: To determine whether patient preferences are a barrier to hospice enrollment. DESIGN: Prospective cohort study. SETTING: Fifteen ambulatory primary care and specialty clinics and three general medicine inpatient units. PARTICIPANTS: Two hundred three seriously ill patients with cancer (n=65, 32%), congestive heart failure (n=77, 38%), and chronic obstructive pulmonary disease (n=61, 30%) completed multiple interviews over a period of up to 24 months. MEASUREMENTS: Preferences for high- and low-burden life-sustaining treatment and site of death and concern about being kept alive by machines. RESULTS: Patients were more likely to enroll in hospice after interviews at which they said that they did not want low-burden treatment (3 patients enrolled/16 interviews at which patients did not want low-burden treatment vs 47 patients enrolled/841 interviews at which patients wanted low-burden treatment; relative risk (RR)=3.36, 95% confidence interval (CI)=1.17-9.66), as were interviews at which patients said they would not want high-burden treatment (5/28 vs 45/826; RR=3.28, 95% CI=1.14-7.62), although most patients whose preferences were consistent with hospice did not enroll before the next interview. In multivariable Cox regression models, patients with noncancer diagnoses who desired low-burden treatment (hazard ratio (HR)=0.46, 95% CI=0.33-0.68) were less likely to enroll in hospice, and those who were concerned that they would be kept alive by machines were more likely to enroll (HR=5.46, 95% CI=1.86-15.88), although in patients with cancer, neither preferences nor concerns about receiving excessive treatment were associated with hospice enrollment. Preference for site of death was not associated with hospice enrollment. CONCLUSION: Overall, few patients had treatment preferences that would make them eligible for hospice, although even in patients whose preferences were consistent with hospice, few enrolled. Efforts to improve end-of-life care should offer alternatives to hospice that do not require patients to give up life-sustaining treatment, as well as interventions to improve communication about patients' preferences.
Aged↗
Mass media and medicine: when the most trusted media mislead.
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Attitude to Health↗
Epidemiology and prognosis of coma in daytime television dramas.
OBJECTIVE: To determine how soap operas portray, and possibly misrepresent, the likelihood of recovery for patients in coma. DESIGN: Retrospective cohort study. SETTING: Nine soap operas in the United States reviewed between 1 January 1995 and 15 May 2005. SUBJECTS: 64 characters who experienced a period of unconsciousness lasting at least 24 hours. Their final status at the end of the follow-up period was compared with pooled data from a meta-analysis. RESULTS: Comas lasted a median of 13 days (interquartile range 7-25 days). Fifty seven (89%) patients recovered fully, five (8%) died, and two (3%) remained in a vegetative state. Mortality for non-traumatic and traumatic coma was significantly lower than would be predicted from the meta-analysis data (non-traumatic 4% v 53%; traumatic 6% v 67%; Fisher's exact test both P < 0.001). On the day that patients regained consciousness, most (49/57; 86%) had no evidence of limited function, cognitive deficit, or residual disability needing rehabilitation. Compared with meta-analysis data, patients in this sample had a much better than expected chance of returning to normal function (non-traumatic 91% v 1%; traumatic 89% v 7%; both P < 0.001). CONCLUSIONS: The portrayal of coma in soap operas is overly optimistic. Although these programmes are presented as fiction, they may contribute to unrealistic expectations of recovery.
Cohort Studies↗
Appropriate use of artificial nutrition and hydration--fundamental principles and recommendations.
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Advance Directives↗
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.
Family↗
Is the palliative performance scale a useful predictor of mortality in a heterogeneous hospice population?
BACKGROUND: Hospices provide care to patients with a wide range of prognoses, and must develop care plans that anticipate each patient's likely illness trajectory. However, the tools available to guide prognostication and care planning in this population have limited data to support their use. For instance, one of the most widely-used prognostic tools, the Palliative Performance Scale (PPS), has been studied primarily in inpatient settings and in patients with cancer. Its prognostic value in a heterogeneous US hospice population is unknown. OBJECTIVE: The goal of this study was to evaluate the prognostic value of the PPS as a predictor of mortality in a heterogeneous hospice population, and to determine whether it performs equally well across diagnoses and sites of care. DESIGN: Prospective cohort study using existing medical records. SETTING/SUBJECTS: This study was conducted at a large community hospice program, and included all patients enrolled in hospice during the study period. MEASUREMENTS: Each patient's PPS score was recorded at the time of enrollment and patients were followed until death or discharge from hospice. RESULTS: A total of 466 patients enrolled in hospice during the study period. The PPS score was a strong independent predictor of mortality (log rank test of Kaplan Meier survival curves p < 0.001). Six-month mortality rates for 3 PPS categories were 96% (for PPS scores 10-20), 89% (for PPS scores 30-40), and 81% (for PPS scores > or =50). Evaluation of interaction terms in Cox proportional hazards models demonstrated a stronger association between PPS score and mortality among nursing home residents and patients with non-cancer diagnoses. Analysis of the area under receiver operating characteristic curves demonstrated strong predictive value overall, with somewhat greater accuracy for nursing home residents and patients with noncancer diagnoses. CONCLUSION: The PPS performs well as a predictor of prognosis in a heterogeneous hospice population, and performs particularly well for nursing home residents and for patients with non-cancer diagnoses. The PPS should be useful in confirming hospice eligibility for reimbursement purposes and in guiding plans for hospice care.
Aged↗
Are we referring patients to hospice too late? Patients' and families' opinions.
BACKGROUND: Patients typically receive hospice care only in the last days or weeks of life, and there is widespread agreement among experts that patients enroll in hospice too late. However, it is not known whether patients and their families believe that they are enrolling in hospice too late. DESIGN: Prospective interview study. SETTING: Not-for-profit, Medicare-certified hospice. PATIENTS: Patients and families recruited at consecutive hospice enrollment visits. MEASUREMENTS: Interviews at the time of hospice enrollment and 1 month after death or discharge from hospice assessed patients' and families' perceptions of the timing of hospice enrollment ("too soon," "too late," "at about the right time"). RESULTS: Interviews were conducted at 274 enrollment visits. Very few patients (1/85; 1%) and family members (12/261; 5%) said that they believed they were enrolling in hospice too late. In follow-up interviews with families after the patient's death or discharge, families were more likely to believe that enrollment was too late (n = 38/218; 17%; sign test p < .001). Families who believed they had enrolled too late had shorter lengths of stay in hospice compared to those who said that enrollment was too soon or at the right time (median 10 vs. 24 days; rank-sum test p < 0.001). CONCLUSION: Despite late enrollment in hospice and very short lengths of stay, most patients and families believe that they are enrolling in hospice at the right time.
Adult↗
"Lost to follow-up": ethnic disparities in continuity of hospice care at the end of life.
BACKGROUND: Hospice has become the major provider of comprehensive end-of-life care in the United States, but is underutilized by African American patients. It is likely that whatever factors are responsible for lower rates of hospice utilization among African Americans also lead to lower rates of return to hospice after discharge, but this is not known. OBJECTIVE: To determine whether African American patients who leave hospice are less likely to return before death. DESIGN: Retrospective cohort study. SETTING: University-affiliated hospice. PARTICIPANTS: All patients discharged after a first admission. MEASUREMENTS: All patient characteristics were defined by abstraction of electronic medical records at the time of hospice discharge. RESULTS: Of 358 discharged patients, 98 (27%) were decertified and 260 (73%) left voluntarily. Ninety-six patients returned to hospice during the study period. In bivariate analysis, African Americans were less likely to return than were other patients (odds ratio (OR) 0.47, 95% CI: 0.28-0.80; p = .005). In a multivariable logistic regression model, African American ethnicity was independently associated with a decreased likelihood of return. CONCLUSIONS: Ethnic disparities in hospice utilization may extend even to those patients who do enroll in hospice. African Americans who leave hospice during their first admission and their families may be less likely to have access to the comprehensive services that hospice programs provide near the end of life, including intensive nursing care, pain and symptom management, and education.
Adult↗
Ethical considerations in end-of-life care and research.
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
Beneficence↗
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.
Adult↗
Timing of hospice referral and families' perceptions of services: are earlier hospice referrals better?
OBJECTIVES: To determine whether families of patients who enroll in hospice near the end of life believe that they receive less benefit from hospice services than families of patients who enroll earlier. DESIGN: Semistructured interviews at the time of hospice enrollment and 1 month after the patient's death. SETTING: This study was conducted at the Hospice of Lancaster County, Lancaster, PA, over a 12-month period spanning 2003-2004. PARTICIPANTS: First-time hospice admissions. MEASUREMENTS: Interviews assessed the anticipated helpfulness of six hospice services (enrollment interviews) and the actual helpfulness of the same services (follow-up interviews). RESULTS: Length of stay in hospice was associated with families' reports of the number of services provided (Spearman rho=0.34, P<.001), and with the mean helpfulness ratings for the services that were provided (Spearman rho=0.34, P<.001), although even with short lengths of stay, most families reported that they received the services that they anticipated and that those services were helpful. CONCLUSION: These results indicate that families feel they receive greater benefits from longer lengths of stay in hospice. Future efforts to define an "optimal" length of stay in hospice should consider patients' and families' perceptions of the benefits that hospice offers.
Adult↗
Empirical assessment of whether moderate payments are undue or unjust inducements for participation in clinical trials.
BACKGROUND: Paying patients to participate in clinical trials is ethically controversial. However, there has been no empirical documentation regarding whether payment represents an undue or unjust inducement. METHODS: To evaluate these questions, we described hypothetical placebo-controlled trials of a new antihypertensive drug to 126 patients with mild-to-moderate hypertension recruited from hypertension and general medicine clinics at a university hospital. Using a 3 x 3, within-subjects design, we altered a risk to participation (either adverse effect rate or rate of randomization to placebo) and the payment participants would receive ($100, $1000, and $2000) and asked patients to indicate their willingness to participate (WTP) in each trial using a 6-point scale. RESULTS: Clustered ordinal logistic regression models revealed that patients' WTP decreased with higher risk of adverse effects (P<.001), higher risk of being assigned to placebo (P =.02), and lower payment level (P<.001). There were no significant interactions between payment level and either risk variable, suggesting that increasing payments do not alter peoples' perceptions of risk. There was a trend toward a positive interaction between income and the influence of payment on WTP (P =.09), suggesting that payment more strongly influences WTP among wealthier people. Wealthier patients were more likely to state that payment was important in their participation decision (37% vs 20%, P =.05). CONCLUSION: Although higher payment motivates research participation, we found no evidence that commonly used payment levels represent undue or unjust inducements.
Antihypertensive Agents↗
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.
Aged↗
Breaking the news: a survey of ALS patients and their caregivers.
Breaking the news of the diagnosis of amyotrophic lateral sclerosis (ALS) is a formidable task. To evaluate the process from the perspective of patients and caregivers, we surveyed 94 patient-caregiver pairs, as well as 50 unpaired patients and 19 unpaired caregivers. We asked respondents to evaluate the physician who first broke the news of the diagnosis based on the time spent discussing the diagnosis, and six attributes of effective communication of bad news derived from the SPIKES protocol (setting, perception, invitation, knowledge, empathy, strategy). Fifty-six percent of patients rated the way the physician who broke the news as average (30.7), below average (8.6) or poor (16.4). Forty-eight percent of caregivers rated the physician as poor (14.4), below average (4.8) or average (28.8). Better performance on all attributes of effective communication as well as greater time spent discussing the diagnosis was correlated with higher patient/caregiver satisfaction. Our results suggest that there is room for improvement in breaking the news of the diagnosis of ALS. Greater adherence to certain attributes of effective communication of bad news may improve the way physicians perform this difficult task.
Amyotrophic Lateral Sclerosis↗
Working to improve palliative care trials.
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Clinical Trials as Topic↗
Recruiting for research in hospice: feasibility of a research screening protocol.
BACKGROUND: The growth of palliative care research has been limited by challenges of slow recruitment and underenrollment. One potential solution to this problem is the use of screening questions embedded in clinical data collection, which identify patients who are interested in participating in research and who can then be approached directly. The goal of this study was to evaluate the feasibility of this strategy for identifying hospice patients who are interested in research participation. DESIGN: Cross-sectional survey. SETTING/ SUBJECTS: Patients and their families who had enrolled in one of two community-based hospice programs. MEASUREMENTS: Three screening questions (for survey-based research, clinical trials and family- focused research) were integrated into the intake process of two community-based hospice organizations. RESULTS: Of the 214 patients who were able to respond, 54% indicated willingness to be approached about survey-based research, 40% were willing to be approached for clinical trials and 65% were willing to be approached for family-focused research. CONCLUSIONS: These results suggest that screening questions may be useful in identifying hospice patients who are willing to be recruited for research. Further study is needed to define the likelihood that these patients will consent and whether these screening questions introduce selection bias in the recruitment process.
Adolescent↗
Physical functioning, depression, and preferences for treatment at the end of life: the Johns Hopkins Precursors Study.
OBJECTIVES: To examine the relationship between worsening physical function and depression and preferences for life-sustaining treatment. DESIGN: Mailed survey of older physicians. SETTING: Longitudinal cohort study of medical students in the graduating classes from 1948 to 1964 at Johns Hopkins University. PARTICIPANTS: Physicians who completed the life-sustaining treatment questionnaire in 1998 and provided information about health status in 1992 and 1998 (n=645, 83% of respondents to the 1998 questionnaire; mean age 68). MEASUREMENTS: Preferences for life-sustaining treatment, assessed using a checklist questionnaire in response to a standard vignette. RESULTS: Of 645 physicians, 11% experienced clinically significant decline in physical functioning, and 18% experienced worsening depression over the 6-year period. Physicians with clinically significant functional decline were more likely (adjusted odds ratio (AOR)=2.14, 95% confidence interval (CI)=1.18-3.88) to prefer high-burden life-sustaining treatment. Worsening depression substantially modified the association between declining functioning and treatment preferences. Physicians with declining functioning and worsening depression were more likely (AOR=5.33, 95% CI=1.60-17.8) to prefer high-burden treatment than respondents without declining function or worsening depression. CONCLUSION: This study calls attention to the need for clinical reassessment of preferences for potentially life-sustaining treatment when health has declined to prevent underestimating the preferences of older patients.
Activities of Daily Living↗