Barriers to completion of health care proxies: an examination of ethnic differences.

BACKGROUND: Advance directives have not been uniformly used by different segments of the US population and studies have consistently shown a lower prevalence of advance directives among African Americans and Hispanics compared with non-Hispanic whites. OBJECTIVE: To examine barriers to completion of health care proxies for different ethnic groups. METHODS: One hundred ninety-seven subjects aged 65 years or older self-identified as African American (n = 65), Hispanic (n = 65), or non-Hispanic white (n = 67) attending a geriatrics and internal medicine outpatient clinic of a large New York City teaching hospital were administered a questionnaire. Questionnaires were developed to examine potential barriers to completion of health care proxies. Barriers were drawn from the literature and from focus groups. RESULTS: Significant predictors of proxy completion using logistic regression analysis included knowledge of health care proxies, availability of a health care agent, exposure to mechanical ventilation, age, and self-reported health status as fair to poor. Subjects who believed that a health care agent was irrelevant in the setting of involved family were significantly less likely to have completed a health care proxy. Although there were significant differences in the baseline completion rates of health care proxies for the 3 ethnic groups, ethnicity did not predict prior appointment of a health care agent in multivariate analysis. CONCLUSIONS: Differences in health care proxy completion rates across white, African American, and Hispanic elderly individuals in this New York City population seem to be related to potentially reversible barriers such as lack of knowledge and the perceived irrelevance of advance directives in the setting of involved family. Enhanced educational efforts of both health care personnel and patients could increase the rate of formal health care proxy appointment.

Pain and discomfort associated with common hospital procedures and experiences.

To determine whether reliable and valid rankings of pain and discomfort resulting from hospital procedures encountered by advanced dementia patients could be developed from interviews with cognitively intact adults, rankings of pain and discomfort resulting from 16 common procedures were obtained from two samples of hospitalized, nondemented adults using ten- (N = 100) and five- (N = 35) point numeric rating scales (NRS). Reliability was assessed by having 30 additional subjects complete ten-point NRS representing the ten most frequent procedures in a re-arranged order. By repeated measure analysis of variance, the scales discriminated between procedures (F = 35.1, P < 0.001). Subjects could discriminate between pain and discomfort (F = 21.6, P < 0.001). The five-point NRS exhibited better subject discrimination between experiences. Reliability was also acceptable. A five-point NRS produced reliable and valid pain and discomfort rankings for 16 common hospital procedures and experiences. These rankings should prove useful in reducing suffering and can serve as surrogates for quantifying pain and discomfort in dementia patients.

Barriers to obtaining consent in dementia research: implications for surrogate decision-making.

OBJECTIVE: To identify barriers to informed consent in research involving subjects with advanced dementia. DESIGN: A randomized controlled clinical trial of palliative care approaches, compared with usual care, in subjects with advanced dementia who are hospitalized. SETTING: A large metropolitan teaching hospital. PARTICIPANTS: All patients older than 65 years of age who have advanced dementia and a Functional Assessment Staging score of 6d to 7f and have been admitted to the hospital. MEASUREMENTS: Surrogates for all eligible subjects were approached for consent to enroll their family members in the trial. Reasons for refusal to enroll in the study were recorded and categorized as either informed refusal (i.e., the surrogate understood the research protocol but declined to give consent for participation) or as a barrier to informed consent (i.e., the surrogates could not participate in the informed consent process or there was no functional surrogate). RESULTS: Forty-nine percent of 146 eligible subjects could not be enrolled in the study. Only four surrogates refused consent for their family members. Of the remaining 68 patients, 41 eligible subjects' surrogates could not be engaged in the informed consent process, and 22 subjects did not have a functional surrogate to consent for research. CONCLUSIONS: Absence of functional surrogate decision-makers is a major barrier to research and clinical decision-making for hospitalized patients with advanced dementia.

Treatment of the dying in the acute care hospital. Advanced dementia and metastatic cancer.

BACKGROUND: Most Americans die in the acute care hospital, where aggressive, life-prolonging interventions are readily performed. Although patients with incurable illness might prefer palliative care, perceived differences in prognosis by physicians may influence the type of care provided. Patients with advanced cancer and advanced dementia represent 2 extremes in the use of hospice services and may also be treated differently in the acute care hospital. We tested this hypothesis and quantitated the use of nonpalliative interventions in hospitalized, incurably ill patients. METHODS: Charts of elderly patients with advanced dementia or metastatic solid tumor malignancy who died during a 13-month period in a tertiary care acute teaching hospital were reviewed. Main outcome measures included the number of patients receiving invasive of noninvasive (but complex) diagnostic tests, invasive nonpalliative treatments, cardiopulmonary resuscitation, systemic antibiotics, and do-not-resuscitate orders. RESULTS: Charts of 164 patients (80 with dementia and 84 with cancer) were reviewed. Overall, 47% received invasive nonpalliative treatments. Controlling for age, sex, length of stay, and insurance status, the groups were equally likely to receive nonpalliative treatments (P = .75), but patients with dementia were more likely to receive new feeding tubes (P = .02). Cardiopulmonary resuscitation was attempted for 24% of each group. Patients with cancer more often received invasive (41% vs 13%; P = .002) and complex noninvasive diagnostic tests (49% vs 23%; P = .02). Overall, 88% received antibiotics, often empirically, but, controlling for neutropenia and invasive tests and treatments, patients with dementia were significantly more likely to receive antibiotics for an identifiable infection (P = .004). CONCLUSIONS: Incurably ill patients often receive nonpalliative interventions at the end of life. Patients with cancer receive more diagnostic tests, but patients with dementia receive more enteral tube feeding. Patients commonly receive systemic antibiotics, often empirically. Cardiopulmonary resuscitation is equally applied, but is out of proportion to expected survival.

Marked improvement in recognition and completion of health care proxies. A randomized controlled trial of counseling by hospital patient representatives.

BACKGROUND: Advance directives provide a means for patients to retain influence on their medical care should decisional capacity be lost. Several studies have now demonstrated that advance directives that are completed in the ambulatory care setting are rarely available and recognized when patients are admitted to the acute care hospital. OBJECTIVE: To evaluate a generalizable model for improving recognition of previously completed advance directives and for promoting appointment of health care proxies in hospitalized patients. METHODS: Hospitalized elderly patients were randomly assigned to receive the intervention or usual care (n = 190). Intervention patients with capacity were counseled by hospital patient representatives about advance directives and encouraged to complete health care proxies. Patients with existing proxies had this information noted in their charts. For patients without capacity, counselors reviewed their charts for proxy documentation and if absent, contacted patients' next of kin and private physicians to determine proxy status. Usual care patients were not contacted by patient representatives. RESULTS: Forty-eight percent of intervention patients completed a new proxy or had a previously completed proxy identified compared with 6% of controls (P < .001). For patients with capacity, 22% of intervention patients had a previously appointed proxy agent identified compared with 6% of controls (P < .001). Thirty-six percent of intervention patients appointed a proxy decision maker compared with 0% of controls (P < .02). For patients without capacity, 31% of intervention patients had previously appointed proxies identified compared with 6% of controls (P < .001). CONCLUSIONS: Counseling by hospital patient representatives is an effective and generalizable means of improving recognition and execution of advance directives in the acute care hospital.