Joan Harrold

Patients who want their family and physician to make resuscitation decisions for them : Observations from SUPPORT and HELP

OBJECTIVE: To determine the extent to which older or seriously ill inpatients would prefer to have their family and physician make resuscitation decisions for them rather than having their own stated preferences followed if they were unable to decide themselves.

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.

Which Hospice Patients With Cancer Are Able to Die in the Setting of Their Choice? Results of a Retrospective Cohort Study

PURPOSE To determine which hospice patients with cancer prefer to die at home and to define factors associated with an increased likelihood of dying at home. METHODS An electronic health record-based retrospective cohort study was conducted in three hospice programs in Florida, Pennsylvania, and Wisconsin. Main measures included preferred versus actual site of death. RESULTS Of 7,391 patients, preferences regarding place of death were determined at admission for 5,837 (79%). After adjusting for other characteristics, patients who preferred to die at home were more likely to die at home (adjusted proportions, 56.5% v 37.0%; odds ratio [OR], 2.21; 95% CI, 1.77 to 2.76). Among those patients (n = 3,152) who preferred to die at home, in a multivariable logistic regression model, patients were more likely to die at home if they had at least one visit per day in the first 4 days of hospice care (adjusted proportions, 61% v 54%; OR, 1.23; 95% CI, 1.07 to 1.41), if they were married (63% v 54%; OR, 1.35; 95% CI, 1.10 to 1.44), and if they had an advance directive (65% v 50%; OR, 2.11; 95% CI, 1.54 to 2.65). Patients with moderate or severe pain were less likely to die at home (OR, 0.56; 95% CI, 0.45 to 0.64), as were patients with better functional status (higher Palliative Performance Scale score: < 40, 64.8%; 40 to 70, 50.2%; OR, 0.79; 95% CI, 0.67 to 0.93; > 70, 40.5%; OR, 0.53; 95% CI, 0.35 to 0.82). CONCLUSION Increased hospice visit frequency may increase the likelihood of patients being able to die in the setting of their choice.

Advancing the science of hospice care: Coalition of Hospices Organized to Investigate Comparative Effectiveness.

Purpose of reviewThere is very little high-quality evidence to guide clinical practice in hospice care. In the areas of medical therapy, patient-centered and family-centered outcomes, and patient safety, there are numerous high-impact questions for which answers are needed. Although randomized controlled trials are the gold standard for research, such trials are difficult, time consuming, and expensive to conduct in a hospice population. Moreover, they cannot examine the implementation of therapies in real-world settings. Therefore, there is a need for novel, complementary approaches to research in this unique population. Recent findingsThis article describes the initial experience of the Coalition of Hospices Organized to Investigate Comparative Effectiveness (CHOICE). CHOICE is a national network of hospices that use electronic health record-based data collection procedures to answer key questions relevant to clinical care and policy. By using a rich source of existing data to conduct observational studies, CHOICE is able to overcome many of the most significant challenges of randomized controlled trials in hospice. However, this approach also created unique challenges related to governance and privacy concerns. SummaryCHOICE is a growing research network that has the potential to make a contribution to the science of palliative care in a hospice population.

Patterns of functional decline in hospice: what can individuals and their families expect?

To describe the trajectory of functional decline after an individual is referred to hospice.

Are Advance Directives Associated with Better Hospice Care

To describe individuals with advance directives at the time of hospice enrollment and to determine whether they have patterns of care and outcomes that are different from those of individuals without advance directives.

Effect of the Medicare Face-to-Face Visit Requirement on Hospice Utilization

BACKGROUND Although many patients enter hospice close to death, some enroll for more than six months. In 2011 the U.S. Centers for Medicare and Medicaid Services (CMS) required that these long-stay patients receive a face-to-face visit by a physician or nurse practitioner to ensure that they continue to meet eligibility criteria. OBJECTIVES This study proposed to determine whether the face-to-face visit requirement increased the rate at which patients were decertified from hospice. DESIGN The study was a retrospective cohort study in six U.S. hospices. Decertification from hospice within 10 months of enrollment was measured. RESULTS Of 23,638 patients, 11,788 (49.9%) would have been affected by the face-to-face requirement. In bivariate analysis, there was a significant decrease in the decertification rate after the requirement was implemented-371/11,788 (3.2%) versus 578/11,850 (4.9%); odds ration (OR): 0.63; 95% CI 0.55-0.72; p<0.001. In a multivariable logistic regression model adjusting for changes in patient characteristics and clustered by hospice, there was still a reduction in decertifications-3.4% versus 5.2%; OR 0.67; 95% CI 0.47-0.97; p=0.034. Although the impact of the face-to-face requirement varied among hospices, all hospices had a decrease in decertification rates (absolute adjusted reduction between 1.4% and 3.6%). CONCLUSIONS The face-to-face requirement may decrease hospice discharges, contrary to its intention.

New endeavors and innovative programs in end of life care.

This paper presents summaries of initiatives and demonstration programs developed by professional and patient care organizations to improve care at the end of life.

Increasing inpatient hospice use versus patient preferences in the USA: are patients able to die in the setting of their choice?

Background Growth in hospice utilisation has been accompanied by an increase in the proportion of hospice patients who die in an inpatient hospice setting rather than at home. Objective To determine whether this increase in inpatient utilisation is consistent with patient preferences. Design Retrospective cohort study. Setting Seven hospices in the Coalition of Hospices Organised to Investigate Comparative Effectiveness (CHOICE) network. Patients 70 488 patients admitted between 1 July 2008 and 31 May 2012. Measurements We measured changes in patients’ stated preferences at the time of admission regarding site of death, including weights to adjust for non-response bias. We also assessed patients’ actual site of death and concordance with patients’ preferences. Results More patients died receiving inpatient care in 2012 as compared to 2008 (1920 (32.7%), 2537 (18.5%); OR 1.21; 95% CI 1.19 to 1.22; p<0.001). However, patients also expressed an increasing preference for dying in inpatient settings (weighted preferences 27.5% in 2012 vs 7.9% in 2008; p<0.001). The overall proportion of patients who died in the setting of their choice (weighted preferences) increased from 74% in 2008 to 78% in 2012 (p<0.001). Limitations This study included only seven hospices, and results may not be representative of the larger hospice population. Conclusions Although more patients are dying while receiving inpatient care, these changes in site of death seem to reflect changing patient preferences. The net effect is that patients in this sample were more likely to die in the setting of their choice in 2012 than they were in 2008.

Interdisciplinary Team Care and Hospice Team Provider Visit Patterns during the Last Week of Life

BACKGROUND Hospice provides intensive end-of-life care to patients and their families delivered by an interdisciplinary team of nurses, aides, chaplains, social workers, and physicians. Significant gaps remain about how team members respond to diverse needs of patients and families, especially in the last week of life. OBJECTIVE The study objective was to describe the frequency of hospice team provider visits in the last week of life, to examine changes in frequency over time, and to identify patient characteristics that were associated with an increase in visit frequency. DESIGN This was a retrospective cohort study using electronic medical record data. SETTING/SUBJECTS From U.S. not-for-profit hospices, 92,250 records were used of patients who died at home or in a nursing home, with a length of stay of at least seven days. MEASUREMENTS Data included basic demographic variables, diagnoses, clinical markers of illness severity, patient functioning, and number of hospice team member visits in the last seven days of life. RESULTS On average the total number of hospice team member visits in the last week of life was 1.36 visits/day. Most were nurse visits, followed by aides, social workers, and chaplains. Visits increased over each day on average across the last week of life. Greater increase in visits was associated with patients who were younger, male, Caucasian, had a spouse caregiver, and shorter lengths of stay. CONCLUSIONS This study provides important information to help hospices align the interdisciplinary team configuration with the timing of team member visits, to better meet the needs of the patients and families they serve.