Opiniones: End‐of‐Life Care Preferences and Planning of Older Latinos

OBJECTIVES: To measure end‐of‐life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture‐based attitudes and extent of ACP. DESIGN: Cross‐sectional interview. SETTING: Twenty‐two senior centers in greater Los Angeles. PARTICIPANTS: One hundred forty‐seven Latinos aged 60 and older. MEASUREMENTS: EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family‐centered decision‐making, trust in healthcare providers, and health and sociodemographic characteristics. RESULTS: If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family‐centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P‐values <.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1–2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1–2.3) were independently associated with having an advance directive. CONCLUSIONS: The majority of older Latinos studied preferred less‐aggressive, comfort‐focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high‐intensity care inconsistent with their preferences.     

High rates of advance care planning in New York City's elderly population

BACKGROUND: Previous studies have demonstrated low rates of advance care planning (ACP), particularly among nonwhite populations, raising questions about the generalizability of this decision-making process. OBJECTIVE: To explore factors that may influence patients' willingness to engage in ACP. DESIGN: Survey. SETTING: Thirty-four randomly selected New York City senior centers. PARTICIPANTS: A total of 700 African American (n = 239), Hispanic (n = 237), and white (n = 224) adults 60 years and older. INTERVENTION: Participants were administered a 51-item survey that assessed attitudes, beliefs, and practices regarding ACP. MAIN OUTCOME MEASURES: Attitudes and beliefs about physicians' trustworthiness, fatalism, beliefs about surrogate decision making, and comfort discussing end-of-life medical care; factors associated with health care proxy completion; and health care proxy completion rates. RESULTS: More than one third of the participants had completed a health care proxy. There were no significant differences in completion rates across the 3 ethnic groups. Respondents who had a primary care physician (odds ratio [OR], 2.0; 95% confidence interval [CI], 1.3-3.2), were more knowledgeable about advance directives (OR, 2.0; 95% CI, 1.4-2.9), or had seen a friend or family member use a mechanical ventilator (OR, 1.5; 95% CI, 1.02-2.1) were significantly more likely to have designated a health care proxy. Respondents who were only comfortable discussing ACP if the discussion was initiated by the physician (OR, 0.6; 95% CI, 0.0-0.8) were significantly less likely to have completed a health care proxy. CONCLUSIONS: African American, Hispanic, and white community-dwelling, older adults had similarly high rates of advance directive completion. The primary predictors of advance directive completion involved modifiable factors such as established primary care physicians, personal experience with mechanical ventilation, knowledge about the process of ACP, and physicians' willingness to effectively initiate such discussions. Some of the racial/ethnic differences in desire for collective family-based decision making that were observed in this study have implications for the evolution of ACP policy that respects and operationalizes these preferences.     

Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care

A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end-of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.     

Current research findings on end-of-life decision making among racially or ethnically diverse groups

PURPOSE: We reviewed the research literature on racial or ethnic diversity and end-of-life decision making in order to identify key findings and provide recommendations for future research. DESIGN AND METHODS: We identified 33 empirical studies in which race or ethnicity was investigated as either a variable predicting treatment preferences or choices, where racial or ethnic groups were compared in their end-of-life decisions, or where the end-of-life decision making of a single minority group was studied in depth. We conducted a narrative review and identified four topical domains of study: advance directives; life support; disclosure and communication of diagnosis, prognosis, and preferences; and designation of primary decision makers. RESULTS: Non-White racial or ethnic groups generally lacked knowledge of advance directives and were less likely than Whites to support advance directives. African Americans were consistently found to prefer the use of life support; Asians and Hispanics were more likely to prefer family-centered decision making than other racial or ethnic groups. Variations within groups existed and were related to cultural values, demographic characteristics, level of acculturation, and knowledge of end-of-life treatment options. Common methodological limitations of these studies were lack of theoretical framework, use of cross-sectional designs, convenience samples, and self-developed measurement scales. IMPLICATIONS: Although the studies are limited by methodological concerns, identified differences in end-of-life decision-making preference and practice suggest that clinical care and policy should recognize the variety of values and preferences found among diverse racial or ethnic groups. Future research priorities are described to better inform clinicians and policy makers about ways to allow for more culturally sensitive approaches to end-of-life care.     

Factors influencing attitudes toward advance directives in Korean older adults

AimWe aimed to determine the factors influencing attitudes toward advance directives in Korean older adults with consideration of an Asian cultural background.MethodsWe recruited community-dwelling older adults aged 60 years or older at a regional senior welfare center in Korea. Demographic factors and mental and physical health status were examined using questionnaires and a physical examination. The questionnaire also assessed perceived necessity of advance directives and related experiences.ResultsMost participants (79.32%) agreed that advance directives were necessary. Older adults with high education levels (odds ratio [OR] 2.31, 95% confidence interval [CI] 0.84–6.34), low economic status (OR 2.09, 95% C.I. 0.60–7.27), and poor cognitive function (adjusted odds ratio [aOR] 2.10, 95% CI 0.89–4.97) had a greater odds of agreeing that advance directives are necessary. All participants with self-care problems (9/9) and most participants with at risk status of physical functioning (13/14) reported agreement. Death-related experiences were also associated. Notably, individuals who had discussions on end-of-life care with family members showed a greater odds of agreeing that advance directives are necessary (aOR 2.12, 95% CI 0.88–5.11).ConclusionsThe factors associated with increased agreement that advance directives are necessary were high education level, low economic status, poor cognitive function, problems in self-care, poor physical functioning, death-related experiences. Especially, discussions of end-of-life care with family members increased the agreement. Thus, discussion on end-of-life care should be encouraged and the factors influencing older adults’ attitudes toward advance directives should be considered in developing policies for such discussion.     

Micromanaging death: process preferences, values, and goals in end-of-life medical decision making

PURPOSE: This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made. DESIGN AND METHODS: Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a longitudinal study designed to investigate psychological assumptions underlying the use of advance directives. Three-hundred thirty-seven outpatients aged 65 and older and their designated surrogate decision makers completed interviews and questionnaires. RESULTS: Very few individuals wished to document specific medical treatment preferences and mandate that they be followed, without exception, near death. Most desired to express more general preferences, such as values and goals for care, in addition to (or, instead of) specific treatment preferences and to allow surrogate decision makers leeway in decision making. Patient-to-patient variability with regard to process preferences was substantial, as was surrogates' misunderstanding of the patients' process preferences. IMPLICATIONS: Very few individuals may desire the standard approach to advance care planning whereby preferences for specific life-sustaining treatments are documented and these requests are strictly followed near death. Instead, patient autonomy may be better served by emphasizing discussion of process preferences and leeway in decision making.     

Content of advance care planning among Japanese elderly people living at home: A qualitative study

Purpose of studyElderly peoples’ values and preferences for end-of-life care have not yet known in details. The aim of the present study was to investigate the end-of-life wishes and decision making among Japanese elderly people who required home care services. The study was designed to qualitative research strategies, using face to face interview data recorded in nursing care records, with a focus on advance care planning.Design and methodsA total of 102 elderly people (47 males, 55 females) of 6 home care support offices in Hyogo prefecture participated.Results and implicationsWe finally extracted the following 5 themes: anxiety about the future, abandonment of control, clinging to current daily life, precarious mutual support, delegating decision-making. While elderly people living at home generally feel anxious and fearful about the future, they seemed to try to avoid thinking too seriously about possible complications in their life.They also tend to leave end-of-life decision to someone else, and their decisions tend to change as they advance in age and as their condition deteriorates. Our findings suggest that medical professionals and care managers always support their patients’ decisions, allowing for the views of the informal caregivers on whom elderly people rely for decision-making.     

The value of disease severity in predicting patient readiness to address end-of-life issues

BACKGROUND: Although patient-physician discussion is the most important tool for end-of-life planning, less than 30% of seriously ill patients have held these discussions. While physicians use objective disease severity and recent clinical events to trigger end-of-life discussions, it is not known if such findings predict patient readiness. We evaluated the ability of disease severity measures and recent clinical events to predict patient readiness for end-of-life discussions in patients with chronic lung disease. METHODS: The desire for discussion about end-of-life care was evaluated in 100 outpatients with a diagnosis of chronic lung disease presenting for pulmonary function testing. Objective disease severity was indicated by the percentage of the predicted forced expiratory volume, use of oral corticosteroids, a functional status score, frequency of recent hospitalizations, and required use of mechanical ventilation. RESULTS: In multivariate analysis, patient desire for an end-of-life discussion with the physician was not associated with percentage of predicted forced expiratory volume in 1 second (odds ratio [OR], 0.99; 95% confidence interval [CI], 0.96-1.03), oral corticosteroid use (OR, 1.34; 95% CI, 0.40-4.54), functional status score (OR, 1.37; 95% CI, 0.34-5.56), hospitalizations in the past year (OR, 0.33; 95% CI, 0.09-1.20), or previous mechanical ventilation (OR, 1.37; 95% CI, 0.34-5.56). CONCLUSIONS: Patients appear no more or less interested in end-of-life discussions at later stages of chronic lung disease. Physicians cannot use disease severity measures or recent clinical events to accurately predict when patients desire end-of-life discussions. Focusing on physician skill in using specific communication strategies for patients at all stages of illness may be the most promising approach to increasing end-of-life discussions.     

International differences in end-of-life attitudes in the intensive care unit: results of a survey

BACKGROUND: Important international differences exist in attitudes toward end-of-life issues in the intensive care unit. METHODS: A simple questionnaire survey was sent by e-mail to participants at an international meeting on intensive care medicine. Respondents were asked to choose 1 of 3 to 5 possible answers for each of 4 questions related to the treatment of a hypothetical patient in a vegetative state due to anoxic encephalopathy after cardiac arrest with no family and no advance directives. RESULTS: From 3494 valid addresses, 1961 complete questionnaires (56%) were received from 21 countries. Sixty-two percent of physicians from Northern and Central Europe said they involved nurses in end-of-life discussions compared with only 32% of physicians in Southern Europe, 38% in Brazil, 39% in Japan, and 29% in the United States (P<.001 for all comparisons). Written do-not-resuscitate orders were preferred in Northern and Central Europe, whereas oral orders took preference in Southern Europe, Turkey, and Brazil. One third of Japanese physicians said that they would not apply do-not-resuscitate orders. Most participants from Japan, Turkey, the United States, Southern Europe, and Brazil chose to treat the hypothetical patient with antibiotics if he/she developed septic shock, whereas in Northern Europe, Central Europe, Canada, and Australia, terminal withdrawal of mechanical ventilation and extubation were the more commonly chosen responses. CONCLUSIONS: In countries where intensive care medicine is relatively well developed, considerable differences remain in physicians' attitudes toward end-of-life care in the intensive care unit. Substantial work remains if an international consensus on these issues is to be reached.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

Decision-making factors regarding resuscitate and hospitalize orders by families of elderly persons on admission to a Japanese long-term care hospital

BACKGROUND: Because long-term care facilities are being asked to care for more and more residents who are dying, the facilities require that new residents and families make decisions regarding their end-of-life care at the time of the admission process. An advance directive including "do-not resuscitate directives (DNR)" or "do-not-hospitalize directives (DNH)" is a written document that afford individuals the opportunity to determine the type and extent of end-of-life care when they are incapable of participation in medical decision making. It is expected that Japanese elderly and families make individual decisions regarding end-of-life care by a Japanese-style decision-making model including advance directives. The purpose of this study was to explore families' decision-making factors regarding cardiopulmonary resuscitate (CPR) and hospitalize orders in a long-term care hospital. METHOD: We assessed 70 admissions in a long-term care hospital in Aichi prefecture from April 2005 to September 2006. All residents were divided into two groups according to their CPR or hospitalize order. Data on the admission characteristics of the residents were collected from medical charts. RESULTS: The prevalence of older age, functional dependence, and illness did not vary significantly with CPR or hospitalize order recorded by families, however, significant variation among physicians existed in the CPR and hospitalize orders. CONCLUSION: Wide variation in the likelihood of having CPR and hospitalize orders among physicians who explain an advance directive suggests a need for standardized methods for eliciting the end-of-life preferences of residents and families on admission to long-term care hospitals.     

Similarities and differences in attitudes toward long-term care between Japanese Americans and Caucasian Americans

The purpose of this study was to compare attitudes toward the use of long-term care between older Japanese Americans (n = 1,244) and older Caucasian Americans (n = 1,354). When presented with a hypothetical situation in which they have dementia, 39% of older Japanese Americans and 42% of older Caucasians intended to be cared for at home, whereas 53% versus 38%, respectively, intended to use nursing home care (P <.001). If the hypothetical situation was hip fracture, 81% of older Japanese Americans and 72% of older Caucasians intended to be cared for at home, with 13% of both groups intending to use nursing home care (P = NS). The subjects' perceptions of what their families, friends, ministers, and communities would want them to choose differed, with more uncertainty among Caucasians (P <.001). For provision of home care, Japanese Americans were more likely to rely on loved ones than Caucasians, who were more likely to rely on paid providers. Multivariate logistic regression showed ethnicity to be independently related to intention to use nursing home care in the dementia scenario, controlling for demographic variables. Being married lowered the odds of intending to use nursing homes in any situation. We conclude that Caucasian Americans intend to use paid home health care at higher rates than Japanese Americans if they become disabled by dementia. Japanese Americans demonstrated more certainty about the influences of others on their opinions, suggesting a more stable cultural norm in this population, and intended to use more nursing home care in the event of permanent debility (dementia).     

Physician‐Assisted Suicide Attitudes of Older Mexican‐American and Non‐Hispanic White Adults: Does Ethnicity Make a Difference?

Little is known about attitudes toward physician‐assisted suicide (PAS) in various ethnic groups. This study compares attitudes held by older Mexican Americans and non‐Hispanic whites and examines subject characteristics that may influence their responses. A convenience sample of 100 older Mexican Americans and 108 non‐Hispanic whites (n=208) aged 60 to 89 were recruited from four primary care community‐based practice sites in San Antonio, Texas. Interview items measured attitudes toward PAS, cognitive status, functional status, and religiosity. Older Mexican Americans (52.7%) reported stronger agreement than non‐Hispanic whites (33.7%) with PAS. Male sex (odds ratio (OR)=2.62, 95% confidence interval (CI)=1.09–6.35) predicted agreement with legalization in Mexican Americans, whereas lower religiosity scores (OR=0.84, 95% CI=0.75–0.94) were predictive of agreement in older non‐Hispanic whites. This study is the first to find positive attitudes among community‐dwelling older Mexican Americans toward PAS that are higher than those of older non‐Hispanic white adults. Sex and religious views were important determinants of positive attitudes toward PAS. Larger, more‐generalizable studies should be conducted to confirm the attitudinal patterns that have been identified in this study.     

Advance care planning: does patient gender make a difference?

BACKGROUND: Although it has received little study, gender may significantly affect patients' attitudes about advance care planning. METHODS: We asked 26 Mexican American (14 male, 12 female), 18 European American (7 male, 11 female), and 14 African American (7 male, 7 female) inpatients for their attitudes about advance care planning and dying. Coders of different ethnicities and genders performed independent, blinded content analyses of responses. RESULTS: The interviews identified 40 themes. Five, including "Advance directives (ADs) improve the chances a patient's wishes will be followed," characterized both genders of all 3 ethnic groups. Although no individual themes distinguished the genders across ethnic groups, 3 meta-themes--or clusters of related themes--did. Men's end-of-life wishes addressed functional outcome alone, but women's wishes addressed other factors, too. Men felt disempowered by the health system, but women felt empowered. Men feared harm from the system, but women anticipated benefit. Each ethnic group expressed these gender differences uniquely. For example, most Mexican American men preferred death to disability, believed "the health care system controls treatment," and wanted no "futile" life support. In contrast, most Mexican American women expressed wishes only about care other than life support (especially about when and where they wanted to die), believed ADs "help staff know...(such) wishes," and trusted the system to "honor (written) ADs." CONCLUSION: Core cultural attitudes observed in both genders of 3 ethnic groups may extend to all Americans. Although core attitudes may support advance care planning for many Americans, health professionals should consider tailoring it to other, ethnic- and gender-specific attitudes.     

End-of-life care in black and white: race matters for medical care of dying patients and their families

OBJECTIVES: To compare the end-of-life medical care experienced by African-American and white decedents and their families. DESIGN: Cross-sectional, retrospective survey with weighted results based on a two-stage probability sampling design. SETTING: Hospitals, nursing homes, and home-based medical services across the United States. PARTICIPANTS: Surrogates (N=1,447; primarily family members) for decedents from 22 states. MEASUREMENTS: Validated end-of-life care outcomes concerning symptom management, decision-making, informing and supporting families, individualized care, coordination, service utilization, and financial impact. RESULTS: Family members of African-American decedents were less likely than those of white decedents to rate the care received as excellent or very good (odds ratio (OR)=0.4). They were more likely to report absent (OR=2.4) or problematic (OR=1.9) physician communication, concerns with being informed (OR=2.5), and concerns with family support (OR=2.6). Family members of African Americans were less likely than those of whites to report that the decedent had treatment wishes (OR=0.3) or written advance care planning documents (OR=0.4). These differences persist when limiting the sample to respondents whose expectations for life-sustaining treatments matched treatments received. Family members of African-American decedents also were more likely to report financial hardship due to savings depletion (OR=2.1) or difficulty paying for care (OR=2.0) and that family/friends (OR=2.0) or home health workers (OR=1.9) provided home care. CONCLUSION: This national study brings evidence that racial disparities persist into end-of-life care, particularly regarding communication and family needs. Results also suggest different home care patterns and levels of financial impact.     

End-of-life care preferences of patients enrolled in cardiovascular rehabilitation programs

STUDY OBJECTIVES: The study assessed the interests of ambulatory cardiac patients in advance planning and their willingness to participate in rehabilitation program-based end-of-life education. DESIGN: Observational survey study. SETTING: Fourteen outpatient cardiac rehabilitation programs in 11 states. PARTICIPANTS: Four hundred fifteen subjects enrolled in cardiac rehabilitation. MEASUREMENTS AND RESULTS: A questionnaire determined patient preferences for advance planning, completion of advance directives, completion of patient-physician discussions on end-of-life care, and effects of health status on patient acceptance of life-sustaining interventions. Seventy-two percent of patients wanted to direct their own end-of-life care, 86% desired more information on advance directives, 62% wanted to learn about life-sustaining care, and 96% were receptive to advance-planning discussions with their physicians. Seventy-two percent of patients had considered that they might require life-sustaining care in the future; acceptability of resuscitative care depended on health status and probability of survival. However, only 15% had discussed advance planning with their physicians, and 10% were confident that their physicians understood their end-of-life wishes. Physicians and cardiovascular rehabilitation programs were considered desirable sources of information on advance planning. CONCLUSIONS: Cardiac patients enrolled in rehabilitation programs want to learn more about end-of-life care and need more opportunities to discuss advance planning with their physicians. Patients consider cardiovascular rehabilitation programs to be acceptable sites for advance planning education.     

Attitudes and practices of U.S. oncologists regarding euthanasia and physician-assisted suicide

BACKGROUND: The practices of euthanasia and physician-assisted suicide remain controversial. OBJECTIVE: To achieve better understanding of attitudes and practices regarding euthanasia and physician-assisted suicide in the context of end-of-life care. DESIGN: Cohort study. SETTING: United States. PARTICIPANTS: 3299 oncologists who are members of the American Society of Clinical Oncology. MEASUREMENTS: Responses to survey questions on attitudes toward euthanasia and physician-assisted suicide for a terminally ill patient with prostate cancer who has unremitting pain, requests for and performance of euthanasia and physician-assisted suicide, and sociodemographic characteristics. RESULTS: Of U.S. oncologists surveyed, 22.5% supported the use of physician-assisted suicide for a terminally ill patient with unremitting pain and 6.5% supported euthanasia. Oncologists who were reluctant to increase the dose of intravenous morphine for terminally ill patients in excruciating pain (odds ratio [OR], 0.61 [95% CI, 0.48 to 0.77]) and had sufficient time to talk to dying patients about end-of-life care issues (OR, 0.79 [CI, 0.71 to 0.87]) were less likely to support euthanasia or physician-assisted suicide. During their career, 3.7% of surveyed oncologists had performed euthanasia and 10.8% had performed physician-assisted suicide. Oncologists who were reluctant to increase the morphine dose for patients in excruciating pain (OR, 0.58 [CI, 0.43 to 0.79]) and those who believed that they had received adequate training in end-of-life care (OR, 0.86 [CI, 0.79 to 0.95]) were less likely to have performed euthanasia or physician-assisted suicide. Oncologists who reported not being able to obtain all the care that a dying patient needed were more likely to have performed euthanasia (P = 0.001). CONCLUSIONS: Requests for euthanasia and physician-assisted suicide are likely to decrease as training in end-of-life care improves and the ability of physicians to provide this care to their patients is enhanced.     

Advance care planning in nursing homes: correlates of capacity and possession of advance directives

PURPOSE: The identification of nursing home residents who can continue to participate in advance care planning about end-of-life care is a critical clinical and bioethical issue. This study uses high quality observational research to identify correlates of advance care planning in nursing homes, including objective measurement of capacity. DESIGN AND METHODS: The authors used cross-sectional, cohort study between 1997 and 1999. Seventy-eight residents (M age = 83.97, SD = 8.2) and their proxies (M age = 59.23, SD = 11.77) were included across five nursing homes. The authors obtained data via chart review, proxy interviews, resident assessments, survey completion by certified nursing assistants, and direct observation of residents' daily behaviors. RESULTS: Capacity assessments revealed that most residents could state a simple treatment preference (82.4%), but a sizable number did not retain capacity to understand treatment alternatives or appreciate the consequences of their choice. Global cognitive ability (Mini-Mental State Examination score) was related to understanding and appreciation. When the authors removed the effects of global cognitive ability, understanding and appreciation were related to time spent by residents in verbal interaction with others. Residents were more likely to possess advance directives when proxies possessed advance directives, proxies were less religious, and residents were socially engaged. IMPLICATIONS: Assessment of proxy beliefs and direct determination of residents' decisional capacity and social engagement may help nursing home staff identify families who may participate in advance planning for end-of-life medical care. Measures of global cognitive ability offer limited information about resident capacity for decision making. Decisional capacity assessments should enhance the verbal ability of individuals with dementia by reducing reliance on memory in the assessment process. Interventions to engage residents and families in structured discussions for end-of-life planning are needed.     

Racial variations in end-of-life care

OBJECTIVES: To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older. DESIGN: The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died. SETTING: Respondents were interviewed at home by telephone (n = 444) or in person (n = 95). PARTICIPANTS: The 540 proxy respondents included 454 whites and 86 blacks. MEASUREMENTS: Questions were asked about advance care planning and end-of-life decisions. RESULTS: Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors. CONCLUSIONS: These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.