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.     

End-of-life care for people with dementia from ethnic minority groups: a systematic review

A systematic review of the literature was conducted to examine the relationship between ethnic minority status and provision of end-of-life care for people with dementia. It included all empirical research on people with dementia or severe cognitive impairment or their caregivers and with ethnic minority people as a subgroup in examining an outcome involving end-of-life care processes or attitudes toward end-of-life care. Two authors independently rated quality of included studies; 20 studies met eligibility criteria and were included in the review: 19 quantitative and one qualitative. All articles were based in the United States, with African American, Hispanic, and Asian groups being the ethnic minorities. Artificial nutrition and other life-sustaining treatments were more frequent and decisions to withhold treatment less common in African American and Asian groups. The qualitative evidence, albeit limited, found that attitudes toward end-of-life care were more similar than different between different ethnic groups. Differences in hospice usage patterns were less consistent and potentially influenced by factors such as study setting and dementia severity. Caregivers' experiences differed between ethnic groups, whereas levels of strain experienced were similar. Disparities in end-of-life care for people with dementia from ethnic minority groups appear to exist and may be due to the double disadvantage of dementia and ethnic minority status. Further research is needed in other western multicultural countries, with a focus on prospective qualitative studies to understand the underlying reasons for these differences, not just their occurrence.     

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.     

Associations of Advance Directive Knowledge,Attitudes, and Barriers/Benefits With Preferences for Advance Treatment Directives Among Patients With Heart Failure and Their Caregivers

BackgroundPatients with heart failure (HF) have not been considered as major beneficiaries of advance directives (ADs). We analyzed factors affecting the preferences for the adoption of ADs by patients with HF and their caregivers.Methods and ResultsSeventy-one patient (mean age: 68 years)–caregiver (mean age: 55 years) dyads were enrolled during clinic visits for routine care at a single institution and completed questionnaires during in-person visits. Cohen's kappa coefficients and generalized estimating equation models were used to analyze the data. The agreement on dyadic perspectives for aggressive treatments was poor or fair, whereas agreement relative to hospice care was moderate (k = 0.42, 95% confidence interval = 0.087–0.754). Both patients and caregivers demonstrated poor knowledge of ADs and similar levels of perceived benefits and barriers to advance care planning. However, the caregivers had more positive attitudes toward ADs than patients. Patients and caregivers who were older and/or males had greater odds of preferring aggressive treatments and/or hospice care. Further, those with depressive symptoms had lower odds of preferring hospice care.ConclusionThe dyadic agreement was moderately high only for hospice care preferences. Both patients and caregivers demonstrated knowledge of shortfalls regarding ADs. Timely AD discussions could increase dyadic agreement and enhance informed and shared decision-making regarding medical care.     

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.     

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.     

Advance care planning and end-of-life care for hospitalized nursing home residents

OBJECTIVES: To describe advance care planning (ACP) and end-of-life care for nursing home residents who are hospitalized in the last 6 weeks of life. DESIGN: Constant comparative analysis of deceased nursing home resident cases.SETTING: A not-for-profit Jewish nursing home. PARTICIPANTS: Forty-three deceased residents hospitalized within the last 6 weeks of life at a tertiary medical center. MEASUREMENTS: Trained nurse reviewers abstracted data from nursing home records and gerontological advanced practice nurse field notes. Clinical and outcome data from the original study were used to describe the sample. Data were analyzed using the constant comparative method and validated in interviews with a gerontological advanced practice nurse and social worker. RESULTS: The analysis revealed distinct characteristics and identifiable transition points in ACP and end-of-life care with frail nursing home residents. ACP was addressed by social workers as part of the nursing home admission process, focused primarily on cardiopulmonary resuscitation preference, and reviewed only after the crisis of acute illness and hospitalization. Advance directive forms specifying preferences or limitations for life-sustaining treatment contained inconsistent language and vague conditions for implementation. ACP review generally resulted in gradual limitation of life-sustaining treatment. Transition points included nursing home admission, acute illness or hospitalization, and decline toward death. Relatively few nursing home residents received hospice services, with most hospice referrals and palliative care treatment delayed until the week before death. Most residents in this sample died without family present and with little documented evidence of pain or symptom management. CONCLUSION: Limiting discussion of advance care plans to cardiopulmonary resuscitation falsely dichotomized and oversimplified the choices about medical treatment and care at end-of-life, especially palliative care alternatives, for these older nursing home residents. Formal hospice services were underutilized, and palliative care efforts by nursing home staff were often inconsistent with accepted standards. These results reinforce the need for research and program initiatives in long-term care to improve and facilitate individualized ACP and palliative care at end of life.     

What Explains Racial Differences in the Use of Advance Directives and Attitudes Toward Hospice Care?

Cultural beliefs and values are thought to account for differences between African Americans and whites in the use of advance directives and beliefs about hospice care, but few data clarify which beliefs and values explain these differences. Two hundred five adults aged 65 and older who received primary care in the Duke University Health System were surveyed. The survey included five scales: Hospice Beliefs and Attitudes, Preferences for Care, Spirituality, Healthcare System Distrust, and Beliefs About Dying and Advance Care Planning. African Americans were less likely than white subjects to have completed an advance directive (35.5% vs 67.4%, P<.001) and had less favorable beliefs about hospice care (Hospice Beliefs and Attitudes Scale score, P<.001). African Americans were more likely to express discomfort discussing death, want aggressive care at the end of life, have spiritual beliefs that conflict with the goals of palliative care, and distrust the healthcare system. In multivariate analyses, none of these factors alone completely explained racial differences in possession of an advance directive or beliefs about hospice care, but when all of these factors were combined, race was no longer a significant predictor of either of the two outcomes. These findings suggest that ethnicity is a marker of common cultural beliefs and values that, in combination, influence decision-making at the end of life. This study has implications for the design of healthcare delivery models and programs that provide culturally sensitive end-of-life care to a growing population of ethnically diverse older adults.     

Advance directive completion rates and end-of-life preferences in Hawaii

To estimate rates of advance directive completion, preference for in-home death and hospice services at life's end, and support for physician assistance in dying, questions were added to two statewide, random-sample telephone surveys-the 1998 Behavioral Risk Factor Surveillance System (N=2,153) and the 1999 OmniTrak health survey (N=700). Data were compared across age, ethnic, and gender groups. Overall, 29% of Hawaii residents had a living will, 22% had a healthcare power of attorney, 65% said they would prefer a home death, 60% would want hospice services, 64% believed a person had a moral right to end his or her life when faced with an incurable illness, and 63% felt doctors should be allowed by law to end a patient's life if the patient and his or her family requested it. Advance directive completion rates increased with age, desire for an in-home death varied by gender and ethnicity, and support of assisted-death options varied by ethnicity. Despite a large minority population, end-of-life preferences among the general population in Hawaii are similar to those of U.S. mainlanders. However, age, gender, and ethnic differences exist. Clinicians are encouraged to ask patients directly about their preferences as a first step toward improving end-of-life care.     

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.     

Truth Telling and Treatment Strategies in End-of-Life Care in Physician-Led Accountable Care Organizations: Discrepancies Between Patients’ Preferences and Physicians’ Perceptions

Providing patient-centered care from preventive medicine to end-of-life care in order to improve care quality and reduce medical cost is important for accountable care. Physicians in the accountable care organizations (ACOs) are suitable for participating in supportive end-of-life care especially when facing issues in truth telling and treatment strategy. This study aimed to investigate patients’ attitudes toward truth telling and treatment preferences in end-of-life care and compare patients’ attitudes with their ACOs physicians’ perceptions.This nationwide study applied snowball sampling to survey physicians in physician-led ACOs and their contracted patients by questionnaire from August 2010 to July 2011 in Taiwan. The main outcome measures were beliefs about palliative care, attitudes toward truth telling, and treatment preferences.The data of 314 patients (effective response rate = 88.7%) and 177 physicians (88.5%) were analyzed. Regarding truth telling about disease prognosis, 94.3% of patients preferred to be fully informed, whereas only 80% of their physicians had that perception (P < 0.001). Significant differences were also found in attitudes toward truth telling even when encountering terminal disease status (98.1% vs 85.3%). Regarding treatment preferences in terminal illness, nearly 90% of patients preferred supportive care, but only 15.8% of physicians reported that their patients had this preference (P < 0.001).Significant discrepancies exist between patients’ preferences and physicians’ perceptions toward truth telling and treatment strategies in end-of-life care. It is important to enhance physician–patient communication about end-of-life care preferences in order to achieve the goal of ACOs. Continuing education on communication about end-of-life care during physicians’ professional development would be helpful in the reform strategies of establishing accountable care around the world.     

The personal and social context of planning for end-of-life care

OBJECTIVES: To examine the potential facilitators of or deterrents to end-of-life planning for community-dwelling older adults, including personal (health-related and sociodemographic) and social (physician and family) influences. DESIGN: In-person interviews with older adults, telephone interviews with physicians and family members. SETTING: Cleveland, Ohio. PARTICIPANTS: Two hundred thirty-one adults aged 65 to 99 who were aging in place, 99 of their primary care physicians, and 127 of their family members. MEASUREMENTS: Questions assessing older adults' discussions with others about end-of-life plans, implementation of advance directives, and physical (Older American Resources and Services) illness index and mental (Short Portable Mental Status Questionnaire) health status. RESULTS: Just fewer than half of older adults had executed an advance directive and discussed their wishes with others. Only personal characteristics of elderly individuals were related to end-of-life plans, with whites, unmarried individuals, and younger adults more likely to have made preparations. Older adults' health status, as evaluated by the patient, physician, and caregiver, did not relate to the tendency to have made advance care plans. Older adults' family members were much more likely to report knowledge of advance care plans than were physicians. CONCLUSION: These findings suggest that many physicians are not talking with their patients about their end-of-life wishes. Furthermore, the propensity to have such discussions may relate more to the personal preferences and level of comfort of patients, physicians, and family members than on the health status of the older adult.     

End of Life Care for Older Russian Immigrants - Perspectives of Russian Immigrants and Hospice Staff

This pilot study examined immigrant Russian seniors and adult children’s views on end-of-life care, and hospice staff members’ experiences providing care to diverse immigrant clients, in areas of North Carolina with a high proportion of immigrants. Data were collected through individual in-depth interviews with informants, including Russian immigrant seniors, Russian adult children, and hospice staff, and analyzed by qualitative techniques. Findings indicate that there is little awareness of end-of-life care options among the Russian immigrant community in North Carolina. End-of-life care is rarely discussed within the family of first generation Russian immigrants but second-generation families are more open to doing so. First generation immigrant Russian seniors in our study do not seem to want any specialized end-of-life care often due to lack of awareness, and prefer family care. Second generation seniors’ attitudes are more accepting of this type of care. Hospice staff serve all those who seek care, receive training to serve diverse clients, and prioritize professional policies. There is sometimes potential for a gap between hospice policies regarding care and immigrant families’ expectations for care. Results suggest a great need for community outreach to immigrant groups to raise awareness of end-of-life care, including advance directives and hospice care and the role of interpreters in health care settings.     

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.     

Traditional Expectations Versus US Realities: First- and Second-Generation Asian Indian Perspectives on End-of-Life Care

BACKGROUND  

Although end-of-life care preferences vary across racial/ethnic groups, little is known about how cultural values affect end-of-life care preferences among South Asian immigrants and their offspring in the US.     

Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families

Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.     

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.     

Racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care

This study investigated racial/ethnic preferences, sex preferences, and perceived discrimination related to end-of-life care. Ten focus groups and a follow-up survey were conducted to obtain in-depth information on end-of-life preferences across five racial/ethnic groups in Michigan stratified by sex. There were 73 focus group participants, including Arab Muslims, Arab Christians, Hispanics, blacks, and whites. The mean age+/-standard deviation was 67+/-8.5 (range 50-83). A focus group screener was used to recruit participants. A moderator discussion guide was used to guide the focus groups. A take-home questionnaire asked about demographic information and end-of-life issues. Arab Americans were in favor of making peace on earth and were against assisted suicide, extending life artificially, nursing homes, and telling the patient "bad news." Hispanic and black women were against assisted suicide and in favor of extending life, whereas the men in these groups felt the opposite. Hispanic women spoke of not wanting a feeding tube and would consider alternative medicine. Blacks were least opposed to nursing homes. For whites, it was important to have choices. When asked about discrimination related to end-of-life care, Muslim women spoke of cultural barriers, blacks spoke of inequities in the past, and whites spoke of age discrimination and abandonment when dying. As the population becomes more diverse and continues to age, it will be important to provide culturally and sex-sensitive end-of-life interventions to increase patient/family satisfaction and allocate resources appropriately.