Susan L. Mitchell

Objectives: To describe the prevalence of, timing of, and factors associated with decisions not to hospitalize nursing home residents with advanced dementia who were dying. Design: Retrospective cohort study. Setting: Six hundred seventy five–bed nursing facility in Boston. Participants: Two hundred forty residents in a teaching nursing home who died between January 2001 and December 2003 with advanced dementia. Measurements: The prevalence and timing of do‐not‐hospitalize (DNH) orders were determined from the medical record. Data describing demographic characteristics, health conditions, advance care planning, sentinel events, and health services usage during the last 6 months of life were examined. Factors associated with having a DNH order were identified. Results: At the time of death, 83.8% of subjects had a DNH order. The prevalence of DNH orders was 50.0% and 34.4%, 30 and 180 days before death, respectively. Hospital transfers were common during the last 6 months of life (24.6%). Factors independently associated with having a DNH order before death included surrogate decision‐maker was not the subject's child (adjusted odds ratio (AOR)=4.39, 95% confidence interval (CI)=1.52–12.66), eating problems (AOR=4.17, 95% CI=1.52–11.47), aged 92 and older (AOR=2.78, 95% CI=1.29–5.96), and length of stay 2 years or longer (AOR=2.34, 95% CI=1.11–4.93). Conclusion: For most institutionalized persons with advanced dementia, a decision to forgo hospitalization is not made until death is imminent. Thus, hospital transfers are common near the end of life. The finding that DNH orders are associated with patient and surrogate factors can help clinicians identify cases in which decisions to forgo hospitalizations may be facilitated.

Objectives: To describe where older Americans with dementia die and to compare the state health system factors related to the location of dementia‐related deaths with those of cancer and all other conditions in this population. Design: Cross‐sectional study. Setting: United States in 2001. Participants: All persons aged 65 and older who died from nontraumatic causes in the United States during 2001. The underlying cause of death, as determined by the National Center for Health Statistics from death certificate data, was used to categorize subjects into three decedent groups: dementia (n=88,523, 5.1%), cancer (n=389,754, 22.4%), and all other conditions (n=1,256,873, 72.5%). Measurements: Site of death was identified as the hospital, home, nursing home, or another location as recorded on the death certificate. In each state, the proportion of hospital deaths in the three decedent groups was categorized as high, medium, and low based on terciles of the national distribution. Using multivariate analyses, associations between state‐level variables and the proportion of deaths occurring in the hospital in each state were examined. Results: The majority of dementia‐related deaths in the United States occurred in nursing homes (66.9%). In contrast, most older persons with cancer died at home (37.8%) or in the hospital (35.4%). The hospital was the most common site of death for all other conditions (52.2%). The state‐specific proportion of dementia‐related deaths occurring in hospitals varied from 5.0% to 37.0% across the nation and was in the highest tercile in 18 states. Hospital death rates related to cancer and all other conditions were in the highest tercile in 14 of these 18 states. After multivariate adjustment, states with a greater number of hospital beds per 1,000 persons and a lower percentage of decedents aged 85 and older were more likely to have a higher proportion of hospital deaths in all three decedent groups. Additionally, in the dementia cohort, states with fewer nursing home beds had a greater proportion of hospital deaths. Conclusion: The majority of older Americans whose underlying cause of death is attributable to dementia on their death certificate die in nursing homes. State‐level factors, including the availability of hospital and nursing home beds and the age of decedents in the population, explain, in part, the wide state‐to‐state variability in the proportion of dementia‐related deaths occurring in the hospital.

Many families and health care professionals in the United States believe that palliation is the most appropriate goal for patients with end-stage dementia.¹ However, many nursing home residents dying with advanced dementia in the United States do not receive optimal palliative care.²

Research from JAMA Internal Medicine — Dying With Advanced Dementia in the Nursing Home

A growing proportion of the approximately 4 million older US adults with Alzheimer disease or other dementias are now surviving to the advanced stages of their illness. Eating and swallowing problems typically develop during the terminal stages of dementias. Whether to initiate feeding tube use or to focus on comfort is one of the most challenging dilemmas facing families, clinicians, and institutions caring for these patients.^1,2

Different health care settings may influence the type of patients selected for long-term tube-feeding. Clinical characteristics of older, tube-fed institutionalized subjects living in Ontario, Canada were compared with those in the United States (US). A cross-sectional cohort study Setting: Nursing homes in the states of Mississippi, Texas, and Vermont (US) and chronic care facilities in Ontario. Tube-fed residents older than age 65 living in facilities in the US between January 1, 1996, and March 31, 1997 (n = 859), and in institutions in Ontario between January 1, 1996, and December 31, 1997 (n = 913). Data were obtained from Minimum Dataset assessments at both sites. Demographic and clinical characteristics were compared between tube-fed subjects living in the US and those in Canadian facilities. In a logistic regression model, the following characteristics were significantly more likely to be found among tube-fed subjects in the US than in those in Ontario: greater impairment of cognitive performance, cardiopulmonary disease, a diagnosis of dementia, female, and age greater than 80 years. Characteristics that were significantly less likely to be present among the US tube-fed subjects included: recurrent lung aspirations, a chewing or swallowing problem, do not resuscitate status, restraint use, weight loss, and stroke. Clinical characteristics differ between older, institutionalized tube-fed subjects in Ontario and in US nursing homes. In order to put these differences into context, consideration must be given to how the contrasting healthcare systems in these two countries may drive decision-making for long-term tube-feeding.

OBJECTIVES: To identify nursing homes factors associated with the use of tube feeding in advanced cognitive impairment. DESIGN: Descriptive study. SETTING: The On‐line Survey Certification of Automated Records (OSCAR) was used to obtain facility characteristics from 1,057 licensed nursing homes in six states from 1995 to 1996. PARTICIPANTS: Residents aged 65 and older with advanced cognitive impairment who had a feeding tube placed over a 1‐year period were identified using the Minimum Data Set. MEASUREMENTS: Nursing home characteristics independently associated with feeding tube placement were determined. RESULTS: Having a full‐time speech therapist on staff, more licensed nurses and fewer nursing assistants were independently associated with greater use of tube feeding in severely cognitively impaired residents. Other features associated with tube feeding included larger facility size, higher proportion of Medicaid beds, absence of an Alzheimer's disease unit, pressure ulcers in 10% or more of residents, and a higher proportion of residents lacking advance directives and with total functional dependency. CONCLUSIONS: Assessment by a speech therapist, staffing ratios, advance directives, fiscal considerations, and specialized dementia units are potentially modifiable factors in nursing homes that may influence the practice of tube feeding in advanced cognitive impairment.

Background. The prolongation of life is an important consideration in the decision to initiate long-term tube feeding. This report critically synthesizes the evidence regarding the impact of percutaneous endoscopic gastrostomy (PEG) tube placement on survival in older persons. Methods. A systematic search was conducted using MEDLINE from January 1980 until January 1999. Articles reporting survival data in older persons (mean or median age >65 years) after PEG tube placement were identified. The number and age of subjects, length of follow-up, setting, and survival data were extracted from all eligible studies. Mortality data at 1, 2, 6, and 12 months after PEG placement were quantitatively synthesized. Clinical characteristics associated with decreased survival among subjects with PEG tubes were identified. Results. Five cohort studies compared survival in patients with and without feeding tubes in nursing homes, but none demonstrated a survival benefit. Another cohort study reported increased survival for tube-fed patients with amyotrophic lateral sclerosis. The pooled proportion of all subjects surviving after PEG placement was as follows: 1 month = 0.81 (95% confidence interval [CI], 0.74–0.88), 2 months = 0.70 (95% CI, 0.65–0.74), 6 months = 0.56 (95% CI, 0.20–0.92), and 12 months = 0.38 (95% CI, 0.26–0.49). Advanced age and malignancy were the factors most often reported to be associated with poorer survival among subjects with PEG tubes. Conclusions. The impact of PEG placement on survival is not known because the level of evidence is limited. PEG tubes may prolong life in selected populations. However, the majority of older patients selected for PEG placement will not survive 1 year after the procedure. Certain factors may identify those patients more likely to derive a survival benefit from long-term tube feeding. This information may offer some guidance to decision makers for whom prolongation of life is an important factor in the tube-feeding decision.