Joan M. Teno

Change in End-of-Life Care for Medicare Beneficiaries: Site of Death, Place of Care, and Health Care Transitions in 2000, 2005, and 2009

IMPORTANCE A recent Centers for Disease Control and Prevention report found that more persons die at home. This has been cited as evidence that persons dying in the United States are using more supportive care. OBJECTIVE To describe changes in site of death, place of care, and health care transitions between 2000, 2005, and 2009. DESIGN, SETTING, AND PATIENTS Retrospective cohort study of a random 20% sample of fee-for-service Medicare beneficiaries, aged 66 years and older, who died in 2000 (n = 270,202), 2005 (n = 291,819), or 2009 (n = 286,282). A multivariable regression model examined outcomes in 2000 and 2009 after adjustment for sociodemographic characteristics. Based on billing data, patients were classified as having a medical diagnosis of cancer, chronic obstructive pulmonary disease, or dementia in the last 180 days of life. MAIN OUTCOME MEASURES Site of death, place of care, rates of health care transitions, and potentially burdensome transitions (eg, health care transitions in the last 3 days of life). RESULTS Our random 20% sample included 848,303 fee-for-service Medicare decedents (mean age, 82.3 years; 57.9% female, 88.1% white). Comparing 2000, 2005, and 2009, the proportion of deaths in acute care hospitals decreased from 32.6% (95% CI, 32.4%-32.8%) to 26.9% (95% CI, 26.7%-27.1%) to 24.6% (95% CI, 24.5%-24.8%), respectively. However, intensive care unit (ICU) use in the last month of life increased from 24.3% (95% CI, 24.1%-24.5%) to 26.3% (95% CI, 26.1%-26.5%) to 29.2% (95% CI, 29.0%-29.3%). (Test of trend P value was <.001 for each variable.) Hospice use at the time of death increased from 21.6% (95% CI, 21.4%-21.7%) to 32.3% (95% CI, 32.1%-32.5%) to 42.2% (95% CI, 42.0%-42.4%), with 28.4% (95% CI, 27.9%-28.5%) using a hospice for 3 days or less in 2009. Of these late hospice referrals, 40.3% (95% CI, 39.7%-40.8%) were preceded by hospitalization with an ICU stay. The mean number of health care transitions in the last 90 days of life increased from 2.1 (interquartile range [IQR], 0-3.0) to 2.8 (IQR, 1.0-4.0) to 3.1 per decedent (IQR, 1.0-5.0). The percentage of patients experiencing transitions in the last 3 days of life increased from 10.3% (95% CI, 10.1%-10.4%) to 12.4% (95% CI, 12.3%-2.5%) to 14.2% (95% CI, 14.0%-14.3%). CONCLUSION AND RELEVANCE Among Medicare beneficiaries who died in 2009 and 2005 compared with 2000, a lower proportion died in an acute care hospital, although both ICU use and the rate of health care transitions increased in the last month of life.

Advance directives for seriously ill hospitalized patients: Effectiveness with the patient self-determination act and the SUPPORT intervention

OBJECTIVE: To assess the effectiveness of written advance directives (ADs) in the care of seriously ill, hospitalized patients. In particular, to conduct an assessment after ADs were promoted by the Patient Self‐Determination Act (PSDA) and enhanced by the effort to improve decision‐making in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), focusing upon the impact of ADs on decision‐making about resuscitation.

Influence of Patient Preferences and Local Health System Characteristics on the Place of Death

OBJECTIVE: To examine the degree to which variation in place of death is explained by differences in the characteristics of patients, including preferences for dying at home, and by differences in the characteristics of local health systems.

Association Between Advance Directives and Quality of End-of-Life Care: A National Study

OBJECTIVES: To examine the role of advance directives (ADs) 10 years after the Patient Self‐Determination Act.

Do Advance Directives Provide Instructions That Direct Care

OBJECTIVE: To evaluate whether the lack of effect of advance directives (ADs) on decision‐making in SUPPORT might arise, in part, from the content of the actual documents.

The concept of quality of life of dying persons in the context of health care.

Considerable research has addressed quality of life and quality of care; however, it has not addressed adequately the experiences of patients and their families at the end of life. Health care may have a greater effect on quality of life during the dying process than it normally does. Building on research and expert review, a conceptual framework is presented that specifies and integrates quality of life and quality of health care indicators. Five main concepts include patient/family context, structure of care, process of care, satisfaction with care, and quality and length of life. Patient and family perspectives are considered. The framework emphasizes quality of life, thus detailed definitions of each quality of life domain are provided. The goal is to facilitate development of a comprehensive set of measures to describe the quality of life of dying persons and evaluate the care they receive, to be used to improve end-of-life care.

Resuscitation Preferences Among Patients With Severe Congestive Heart Failure Results From the SUPPORT Project

BACKGROUND We sought to describe the resuscitation preferences of patients hospitalized with an exacerbation of severe congestive heart failure, perceptions of those preferences by their physicians, and the stability of the preferences. METHODS AND RESULTS Of 936 patients in this study, 215 (23%) explicitly stated that they did not want to be resuscitated. Significant correlates of not wanting to be resuscitated included older age, perception of a worse prognosis, poorer functional status, and higher income. The physicians perception of the patients preference disagreed with the patients actual preference in 24% of the cases overall. Only 25% of the patients reported discussing resuscitation preferences with their physician, but discussion of preferences was not significantly associated with higher agreement between the patient and physician. Of the 600 patients who responded to the resuscitation question again 2 months later, 19% had changed their preferences, including 14% of those who initially wanted resuscitation (69 of 480) and 40% of those who initially did not (48 of 120). The physicians perception of the patients hospital resuscitation preference was correct for 84% of patients who had a stable preference and 68% of those who did not. CONCLUSIONS Almost one quarter of patients hospitalized with severe heart failure expressed a preference not to be resuscitated. The physicians perception of the patients preference was not accurate in about one quarter of the cases. but communication was not associated with greater agreement between the patient and the physician. A substantial proportion of patients who did not want to be resuscitated changed their minds within 2 months of discharge.

End-of-life transitions among nursing home residents with cognitive issues.

BACKGROUND Health care transitions in the last months of life can be burdensome and potentially of limited clinical benefit for patients with advanced cognitive and functional impairment. METHODS To examine health care transitions among Medicare decedents with advanced cognitive and functional impairment who were nursing home residents 120 days before death, we linked nationwide data from the Medicare Minimum Data Set and claims files from 2000 through 2007. We defined patterns of transition as burdensome if they occurred in the last 3 days of life, if there was a lack of continuity in nursing homes after hospitalization in the last 90 days of life, or if there were multiple hospitalizations in the last 90 days of life. We also considered various factors explaining variation in these rates of burdensome transition. We examined whether there was an association between regional rates of burdensome transition and the likelihood of feeding-tube insertion, hospitalization in an intensive care unit (ICU) in the last month of life, the presence of a stage IV decubitus ulcer, and hospice enrollment in the last 3 days of life. RESULTS Among 474,829 nursing home decedents, 19.0% had at least one burdensome transition (range, 2.1% in Alaska to 37.5% in Louisiana). In adjusted analyses, blacks, Hispanics, and those without an advance directive were at increased risk. Nursing home residents in regions in the highest quintile of burdensome transitions (as compared with those in the lowest quintile) were significantly more likely to have a feeding tube (adjusted risk ratio, 3.38), have spent time in an ICU in the last month of life (adjusted risk ratio, 2.10), have a stage IV decubitus ulcer (adjusted risk ratio, 2.28), or have had a late enrollment in hospice (adjusted risk ratio, 1.17). CONCLUSIONS Burdensome transitions are common, vary according to state, and are associated with markers of poor quality in end-of-life care.

Factors associated with site of death: A national study of where people die

Objectives. Recent public attention has focused on quality of care for the dying. Where one dies is an important individual and public health concern. Materials and methods. The 1993 National Mortality Followback Survey (NMFS) was used to estimate the proportion of deaths occurring at home, in a hospital, or in a nursing home. Sociodemographic variables, underlying cause of death, geographic region, hospice use, social support, health insurance, patients’ physical limitations, and physical decline were considered as possible predictors of site of death. The relationship between these predictors and site death with multinomial logistic regression methods was analyzed. Results. Nearly 60% of deaths occurred in hospitals, and approximately 20% of deaths took place at home or in nursing homes. Decedents, who were black, less educated, and enrolled in an HMO were more likely to die in the hospital. After adjustment, functional decline in the last 5 months of life was an important predictor of dying at home (for loss of 3 or more ADLs [OR, 1.57; 95% CI, 1.11–2.21]). Having functional limitations 1 year before death, and experiencing functional decline in the last 5 months of life were both associated with dying in a nursing home. Conclusions. Rapid physical decline during the last 5 months was associated with dying at home or in a nursing home, whereas earlier functional loss was associated with dying in a nursing home.

Family satisfaction with end-of-life care in seriously ill hospitalized adults.

OBJECTIVE: To examine factors associated with family satisfaction with end‐of‐life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).