Josie D. Cortez

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.

Cultural Beliefs About a Patient’s Right Time to Die: An Exploratory Study

ABSTRACTBACKGROUNDGeneralist 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.OBJECTIVEBecause little prior research addresses such beliefs, we investigated them in this exploratory, hypothesis-generating study.DESIGN AND SUBJECTSAnticipating 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 RESULTSNearly 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.CONCLUSIONSAmericans 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.

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.

Exploring Chronically Ill Seniors' Attitudes About Discussing Death and Postmortem Medical Procedures

Proxy decisions about postmortem medical procedures must consider the dead patients 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.

ETHNIC CULTURE AND SURVIVORSʼ EXPERIENCES OF A SIGNIFICANT DEATH.: 404

ETHNIC CULTURE AND SURVIVORS’ EXPERIENCES OF A SIGNIFICANT DEATH. H.S. Perkins, E. Ponce de Souza, J.D. Cortez, H.P. Hazuda, The University of Texas Health Science Center and the Intercultural Development Research Association, San Antonio, TX. Purpose: Excellent perimortem care addresses survivors’ experiences. Culture likely frames such experiences, but little research guides physicians in meeting survivors’ needs. Methods: We used hypothesis-generating, open-response interviews to study, by ethnic group, survivors’ experiences of a significant death. We asked 26 Mexican Americans (MAs), 18 Euroamericans (EAs), and 14 African Americans (AAs), aged 50 to 79, to describe the deaths of people closest to them. Content analysis identified themes in responses. Results: Many MAs, EAs, and AAs related negative experiences. Some detailed their grieving (38%, 50%, and 43%, respectively) or remembered the funerals negatively (31%, 45%, and 36%, respectively). Importantly, all subjects younger than 42 when the significant person died and 24 of 25 who cited their mothers as that person remembered the funerals negatively. More MAs and AAs than EAs said family presence at a death is important (31% and 43% vs 17%). Yet equal percentages of MAs recalled family unsupportiveness and supportiveness at the significant death (31%), and more AAs recalled family unsupportiveness than supportiveness (21% versus 14%). Some subjects, especially MAs, related positive experiences. More MAs than EAs or AAs remembered the funerals positively (23% vs 6% and 14%) or expressed hope that the dead reached heaven (36% vs 11% and 19%). MAs alone, especially women (25%), said that one should say only good things about the dead. EA men’s memories were especially bleak: 71% remembered the funerals negatively, none remembered the funerals positively, and none recalled family supportiveness at the death. Conclusion: Physicians should encourage family presence and support at a death. Certain survivors_the young, children of any age whose mothers die, and EA men_may need special attention through the grieving process. 405

326 ETHNIC GROUP, GENDER, AND PATIENTS' BELIEFS ABOUT THE OPTIMAL TIME TO DIE.

Purpose Excellent end-of-life care considers patient beliefs about the optimal time to die. Since no research describes such beliefs, we studied them by two likely influences, ethnic group and gender. Methods We conducted open-ended interviews with 26 Mexican American (MA), 18 European American (EA), and 14 African American (AA) men and women. A consensus-based content analysis identified themes. Because some subjects responded several ways about a theme, percentages may add to over 100%. Results Majorities of MA and EA men and sizable minorities of the other four groups noted the inevitability of death (see the Table). Further, majorities or near-majorities of all ethnic-gender groups said God determines the optimal time to die. Subjects also cited other factors that might determine that time. Conclusions Though largely agreeing about God as a determinant of the optimal time to die, these ethnic-gender groups differed widely about other possible determinants (such as patient preferences, family circumstances, lack of human causation, and illness severity). Given such diversity, sensitive end-of-life care requires that health professionals know each patients beliefs and tailor care accordingly.

210 OUTSIDE THE SCIENTIFIC PARADIGM: PATIENTS' BELIEFS ABOUT THE MOMENT OF DEATH AND CADAVER SENTIENCE.

Purpose Beliefs about the physiologic signs pinpointing the moment of death and about cadaver sentience may affect peoples ideas about how to handle the cadaver. Because no research exists, we explored such beliefs according to two possible influences, ethnic group and gender. Methods We conducted open-ended interviews with 26 Mexican American (MA), 18 European American (EA), and 14 African American (AA) men and women. A consensus-based content analysis identified themes. Because some subjects did not respond to every theme, percentages may add to under 100%. Results Signs that subjects said pinpoint the moment of death differed among the six ethnic-gender groups. Most responses fell into three categories—stoppage of the heart, stoppage of the lungs, and cooling of the body. No one sign predominated. Responses for MA men and EA women ranged over all three categories: 14%, 7%, and 21%, respectively, for MA men; 27%, 45%, and 27%, respectively, for EA women. AA women mentioned only stoppage of the lungs (and just 43% did that). Yet the other three groups opined little: just 8-14% of MA women, EA men, and AA men mentioned any of the three signs above. Hence, the data do not characterize the opinions of those groups. Only two subjects mentioned brain criteria. Some subjects in all groups except MA women described out-of-body experiences, which subjects attributed to death (see the Table). Such experiences occurred with comas or cardiac arrests. All were visual; most were auditory. Subjects in all groups—including 29% or more of MA men, EA women, and AA men?believed the cadaver retains sentience, especially hearing or feeling. Conclusions Ethnic group and gender influence beliefs about signs pinpointing the moment of death and about cadaver sentience. Those beliefs sometimes originate outside the scientific paradigm. When declaring death or discussing postmortem procedures such as organ donation or autopsy, health professionals may need to set aside the scientific paradigm and to work within peoples unscientific beliefs.