Melissa D.A. Carlson

Study design, precision, and validity in observational studies.

The use of observational research methods in the field of palliative care is vital to building the evidence base, identifying best practices, and understanding disparities in access to and delivery of palliative care services. As discussed in the introduction to this series, research in palliative care encompasses numerous areas in which the gold standard research design, the randomized controlled trial (RCT), is not appropriate, adequate, or even possible.1,2 The difficulties in conducting RCTs in palliative care include patient and family recruitment, gate-keeping by physicians, crossover contamination, high attrition rates, small sample sizes, and limited survival times. Furthermore, a number of important issues including variation in access to palliative care and disparities in the use and provision of palliative care simply cannot be answered without observational research methods. As research in palliative care broadens to encompass study designs other than the RCT, the collective understanding of the use, strengths, and limitations of observational research methods is critical. The goals of this first paper are to introduce the major types of observational study designs, discuss the issues of precision and validity, and provide practical insights into how to critically evaluate this literature in our field.

Hospice Enrollment Saves Money For Medicare And Improves Care Quality Across A Number Of Different Lengths-Of-Stay

Despite its demonstrated potential to both improve quality of care and lower costs, the Medicare hospice benefit has been seen as producing savings only for patients enrolled 53-105 days before death. Using data from the Health and Retirement Study, 2002-08, and individual Medicare claims, and overcoming limitations of previous work, we found

Brief Communication: Management of Implantable Cardioverter-Defibrillators in Hospice: A Nationwide Survey

2,561 in savings to Medicare for each patient enrolled in hospice 53-105 days before death, compared to a matched, nonhospice control. Even higher savings were seen, however, with more common, shorter enrollment periods:

Ownership status and patterns of care in hospice: results from the National Home and Hospice Care Survey.

2,650,

Raising The Standard: Palliative Care In Nursing Homes

5,040, and

Impact of Hospice Disenrollment on Health Care Use and Medicare Expenditures for Patients With Cancer

6,430 per patient enrolled 1-7, 8-14, and 15-30 days prior to death, respectively. Within all periods examined, hospice patients also had significantly lower rates of hospital service use and in-hospital death than matched controls. Instead of attempting to limit Medicare hospice participation, the Centers for Medicare and Medicaid Services should focus on ensuring the timely enrollment of qualified patients who desire the benefit.

Hospice Characteristics and the Disenrollment of Patients with Cancer

BACKGROUND Communication about the deactivation of implantable cardioverter-defibrillators (ICDs) in patients near the end of life is rare. OBJECTIVE To determine whether hospices are admitting patients with ICDs, whether such patients are receiving shocks, and how hospices manage ICDs. DESIGN Cross-sectional survey. SETTING Randomly selected hospice facilities. PARTICIPANTS 900 hospices, 414 of which responded fully. MEASUREMENTS Frequency of admission of patients with ICDs, frequency with which patients received shocks, existence of ICD deactivation policies, and frequency of deactivation. RESULTS 97% of hospices admitted patients with ICDs, and 58% reported that in the past year, a patient had been shocked. Only 10% of hospices had a policy that addressed deactivation. On average, 42% (95% CI, 37% to 48%) of patients with ICDs had the shocking function deactivated. LIMITATION The study relied on the knowledge of hospice administrators. CONCLUSION Hospices are admitting patients with ICDs, and patients are being shocked at the end of life. Ensuring that hospices have policies in place to address deactivation may improve the care for patients with these devices. The authors provide a sample deactivation policy. PRIMARY FUNDING SOURCE National Institute of Aging and National Institute of Nursing Research.

Strategies and Innovative Models for Delivering Palliative Care in Nursing Homes

Background:The number of for-profit hospices increased nearly 4-fold over the past decade, more than 6 times the growth of nonprofit hospices. Despite this growth, the impact of ownership on hospice care is largely unknown. We sought to assess differences in the provision of services to patients of for-profit and nonprofit hospices. Methods:Using the 1998 National Home and Hospice Care Survey, we examined services used by patients (N = 2080) cared for by 422 hospices nationwide. We used multivariable ordered logistic and logistic regression to assess the effect of profit status on service use, adjusting for potentially confounding patient and organizational characteristics. We calculated point estimates adjusted for sampling weights and standard errors adjusted for the clustering of patients within hospices. Results:In ordered logistic models controlling for organizational and patient factors, patients of for-profit hospices received a significantly narrower range of services (adjusted odds ratio [OR], 0.45; 95% confidence interval [CI], 0.22–0.92) than patients of nonprofit hospices. This result is driven by patients of for-profit hospices receiving significantly fewer types of hospice services that federal regulations term “noncore” or more discretionary services (adjusted OR, 0.34; 95% CI, 0.15–0.75). Conclusion:The pattern of care differs in for-profit and nonprofit hospices. As the industry develops a substantial for-profit presence, it is critical for clinicians and other healthcare professionals to be alert to the potential impact of profit status on the care their patients receive.

Skilled Nursing Facility Referral and Hospital Readmission Rates after Heart Failure or Myocardial Infarction

More than two-thirds of long-stay nursing home residents suffer from dementia. This illness has a variable and unpredictable course that renders it a poor fit for the six-month life-expectancy requirement of the Medicare hospice benefit. Palliative care-a form of treatment that strives to match care to patient goals, relieve pain, and improve quality of life for people with chronic or life-threatening illnesses-should be the standard of practice for all elderly dementia patients in nursing homes, regardless of prognosis. Similar principles could apply to other long-term residents with underlying chronic diseases who would benefit from palliative care. Indeed, we would argue that the growing acceptance of the culture-change movement centered on elder-directed goals in nursing homes is promising evidence of the goodness-of-fit of palliative care principles in the long-term care setting.

Geographic Access to Hospice in the United States

PURPOSE Patients with cancer represent the largest diagnostic group of hospice users, with 560,000 referred for hospice in 2008. Oncologists rely on hospice teams to provide care for patients who have completed disease-directed treatment and desire to remain at home. However, 11% to 15% of hospice users disenroll from hospice, and little is known about their health care use and Medicare expenditures. PATIENTS AND METHODS We used Surveillance, Epidemiology and End Results-Medicare data for hospice users who died as a result of cancer between 1998 and 2002 (N = 90,826) to compare rates of hospitalization, emergency department, and intensive care unit admission and hospital death for hospice disenrollees and those who remained with hospice until death. We also compared per-day and total Medicare expenditures across the two groups. RESULTS Patients with cancer who disenrolled from hospice were more likely to be hospitalized (39.8% v 1.6%; P < .001), more likely to be admitted to the emergency department (33.9% v 3.1%; P < .001) or intensive care unit (5.7% v 0.1%; P < .001), and more likely to die in the hospital (9.6% v 0.2%; P < .001). Patients who disenrolled from hospice died a median of 24 days following disenrollment, suggesting that the reason for hospice disenrollment was not improved health. In multivariable analyses, hospice disenrollees incurred higher per-day Medicare expenditures than patients who remained with hospice until death (higher per-day expenditures of