Patient-centered Involvement in Decision-Making: Ethnic Group and Sex as Indicators of Patients' Preferences and Perceptions.

BACKGROUND/OBJECTIVES: Ideally, doctors ask each patient's current views about involvement in decision-making, but inquiries prove inconclusive with some inpatients. Doctors may then need indirect indicators of those views. We, therefore, explored ethnic group and sex as cultural indicators of patients' current preferences and perceptions about such involvement. METHODS: In open-response interviews, we asked those preferences and perceptions of 26 Mexican American (MA), 18 Euro-American (EA), and 14 African American (AA) adult inpatients. We content-analyzed responses blindly to identify themes and linked those themes to ethnic group and sex. RESULTS: Only sex indicated patients' current preferences. Regardless of ethnic group, most men preferred decision-making by the doctor (with or without the patient); most women, decision-making by the patient (with or without the doctor). But both ethnic group and sex together indicated patients' current perceptions. Specifically, each ethnic group as a whole most often perceived decision-making by the doctor alone and the patient alone on separate occasions, but the sexes within ethnic groups differed. For MAs roughly equal numbers of men and women perceived such decision making, for EAs more men than women did so, and for AAs more women than men did so. In addition, no EA men but some EA women perceived decision-making by the doctor alone, and some MA men and women-but no EAs or AAs-perceived decision-making by the patient alone. Primarily ethnic group indicated matches between current preferences and perceptions: Most EAs had matches; most MAs and AAs did not. CONCLUSIONS: Whenever direct inquiries fail, ethnic group and sex may indicate adult inpatients' current preferences and perceptions about involvement in decision-making. Yet matching those preferences and perceptions, especially for minority patients, remains difficult.

Diversity of patients' beliefs about the soul after death and their importance in end-of-life care.

BACKGROUND: Because beliefs about the soul after death affect the dying experience, patients and survivors may want to discuss those beliefs with their healthcare provider; however, almost no medical research describes such beliefs, leaving healthcare professionals ill prepared to respond. This exploratory study begins the descriptive process. METHODS: Assuming that culture is key, we asked older adult Mexican American (MA), European American (EA), and African American (AA) inpatients their beliefs about whether the soul lives on after physical death; if so, where; and what the "afterlife" is like. RESULTS: Some beliefs varied little across the sample. For example, most participants said that the soul lives on after physical death, leaves the body immediately at death, and eventually reaches heaven. Many participants also said death ends physical suffering; however, other beliefs varied distinctly by ethnic group or sex. More AAs than MAs or EAs said that they believed that the soul after physical death exists in the world (57% vs 35% and 33%) or interacts with the living (43% vs 31% and 28%). Furthermore, in every ethnic group more women than men said they believed that the soul exists in the world (42% vs 29% for MAs, 45% vs 14% for EAs, and 71% vs 43% for AAs). CONCLUSIONS: As death nears, patients or survivors may want to discuss beliefs about the soul after death with their healthcare provider. This preliminary study characterizes some of those beliefs. By suggesting questions to ask and responses to give, the study provides healthcare professionals a supportive, knowledgeable way to participate in such discussions.

Inpatient Culture and Satisfaction With Care: A Novel Perspective.

BACKGROUND: Hospital professionals must attend to patients' satisfaction with care. Along with technical quality of care, patients' personal characteristics may affect that satisfaction, but standard demographics research often overlooks cultural links. METHODS: We, therefore, asked 58 San Antonio, Texas, inpatients their satisfaction with care and examined responses for attitudes related to ethnic-Mexican-American (MA), Euro-American (EA), or African-American (AA)-and gender cultures. RESULTS: Many attitudes occurred widely. Most respondents expected doctors to attend them faithfully, inform them honestly, and pursue their needs and wishes singularly. Most also trusted doctors, and expressed satisfaction with doctors' generally exemplary character and service ethic. But most respondents also feared hospital treatments, and some expressed dissatisfaction that doctors had inadequately informed them or ignored their wishes. Only rare attitudes distinguished particular ethnic-gender groups. Unlike other groups few EA or AA men expressed dissatisfactions. But some MA and EA women said hospitals use too many caregivers or coordinate care poorly. Furthermore, most AA women expressed no explicit trust in doctors, and most EA women expressed actual distrust of doctors, often doubting their technical competence or altruism. CONCLUSIONS: These findings suggest a novel perspective: a unique inpatient culture, largely unaffected by ethnic group or gender. Patients interpret their hospital experience through that culture. Hospital professionals might respond with both universal measures (addressing patients' fears, dissatisfactions, and distrust) and targeted ones (explicitly asking EA and AA men about dissatisfactions, and AA and EA women about distrust). Such culturally grounded measures may help maintain or increase inpatients' satisfaction.

Cultural beliefs about a patient's right time to die: an exploratory study.

BACKGROUND: Generalist physicians must often counsel patients or their families about the right time to die, but feel ill-prepared to do so. Patient beliefs may help guide the discussions. OBJECTIVE: Because little prior research addresses such beliefs, we investigated them in this exploratory, hypothesis-generating study. DESIGN AND SUBJECTS: Anticipating culture as a key influence, we interviewed 26 Mexican Americans (MAs), 18 Euro-Americans (EAs), and 14 African Americans (AAs) and content-analyzed their responses. MAIN RESULTS: Nearly all subjects regardless of ethnic group or gender said God determines (at least partially) a patient's right time to die, and serious disease signals it. Yet subjects differed by ethnic group over other signals for that time. Patient suffering and dependence on "artificial" life support signaled it for the MAs; patient acceptance of death signaled it for the EAs; and patient suffering and family presence at or before the death signaled it for the AAs. Subjects also differed by gender over other beliefs. In all ethnic groups more men than women said the time of death is unpredictable; but more women than men said the time of death is preset, and family suffering signals it. Furthermore, most MA women--but few others--explicitly declared that family have an important say in determining a patient's right time to die. No confounding occurred by religion. CONCLUSIONS: Americans may share some beliefs about the right time to die but differ by ethnic group or gender over other beliefs about that time. Quality end-of-life care requires accommodating such differences whenever reasonable.

Exploring chronically ill seniors' attitudes about discussing death and postmortem medical procedures.

Proxy decisions about postmortem medical procedures must consider the dead patient's likely preferences. Ethnic- and sex-based attitudes surely underlie such preferences but lack sufficient characterization to guide decisions. Therefore, this exploratory study interviewed Mexican-American, Euroamerican, and African-American seniors in San Antonio, Texas, for their attitudes about discussing death before it occurs and about organ donation, autopsy, and practice on cadavers. A rigorous content analysis identified themes. Majority attitudes of an ethnic group or sex subgroup here may characterize the group generally. Attitudes about discussing death differed only by ethnic group. Mexican Americans and Euroamericans favored such discussions, but African Americans did not. Attitudes about the postmortem procedures differed by ethnic group and sex. Overall, Mexican Americans viewed the procedures most favorably; Euroamericans, less so; and African Americans, least so. Men and women differed further within ethnic groups. Mexican-American men and women split evenly over organ donation, the men expressed no majority preference about autopsies and the women agreed to them, and the men refused and the women agreed to practice on their cadavers. Euroamerican men expressed no majority preferences, but Euroamerican women agreed to organ donation, had no majority preference about autopsies, and refused practice on their cadavers. African-American men expressed no majority preferences, and African-American women expressed none about organ donation or autopsies but refused practice on their cadavers. If confirmed, these ethnic- and sex-based attitudes can help health professionals tailor postmortem care to individual patients' preferences.

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.

Patients' diverse beliefs about what happens at the time of death.

BACKGROUND: Beliefs about what happens at the time of death surely affect a patient's whole dying experience and could help guide end-of-life care. Yet virtually no research describes those beliefs. This exploratory study begins the descriptive process. METHODS: Assuming culture is key, we interviewed 26 Mexican-American (MA), 18 Euro-American (EA), and 14 African-American (AA) inpatients about their beliefs concerning what happens at the time of death. RESULTS: One belief, that death separates the dead from the living, was widespread. Majorities of all 3 ethnic group samples and of 5 of the 6 gender subsamples expressed this belief, saying the dead "go" or "leave" from this life. Other beliefs differed by ethnic group or gender. For example, more EAs (50%) than others said death is a momentary event, and more MAs (35%) than others said death involves "being taken" by an external force (always God or Jesus). Furthermore, considerably more EA women (45%) than others said some senses persist after death. In contrast, the physiologic signs that participants cited as defining the exact time of death varied from individual to individual with no ethnic or gender pattern, and no one sign predominated. CONCLUSIONS: A few beliefs about what happens at the time of death may characterize Americans in general; many other beliefs may characterize only certain ethnic groups, genders, or individuals. To identify such beliefs and to use them to guide end-of-life care, hospitalists and other health professionals may have to elicit them directly from patients or survivors.

Cross-cultural similarities and differences in attitudes about advance care planning.

OBJECTIVE: Culture may have an important impact on a patient's decision whether to perform advance care planning. But the cultural attitudes influencing such decisions are poorly defined. This hypothesis-generating study begins to characterize those attitudes in 3 American ethnic cultures. DESIGN: Structured, open-ended interviews with blinded content analysis. SETTING: Two general medicine wards in San Antonio, Texas. PATIENTS: Purposive sampling of 26 Mexican-American, 18 Euro-American, and 14 African-American inpatients. MEASUREMENTS AND MAIN RESULTS: The 3 groups shared some views, potentially reflecting elements of an American core culture. For example, majorities of all groups believed "the patient deserves a say in treatment," and "advance directives (ADs) improve the chances a patient's wishes will be followed." But the groups differed on other themes, likely reflecting specific ethnic cultures. For example, most Mexican Americans believed "the health system controls treatment," trusted the system "to serve patients well," believed ADs "help staff know or implement a patient's wishes," and wanted "to die when treatment is futile." Few Euro Americans believed "the system controls treatment," but most trusted the system "to serve patients well," had particular wishes about life support, other care, and acceptable outcomes, and believed ADs "help staff know or implement a patient's wishes." Most African Americans believed "the health system controls treatment," few trusted the system "to serve patients well," and most believed they should "wait until very sick to express treatment wishes." CONCLUSION: While grounded in values that may compose part of American core culture, advance care planning may need tailoring to a patient's specific ethnic views.