Helen P. Hazuda, PhD

Every health professional bears responsibility at some point for helping dying patients and their survivors face death spiritually and emotionally. But, because most Americans die in hospitals, that responsibility falls disproportionately to hospitalists and other hospital‐based health professionals.

Personal beliefs about what happens at death surely influence whether patients welcome or dread it, and whether survivors remember it with relief or regret.1 We believe, therefore, that competent, compassionate end‐of‐life care requires hospitalists and other health professionals who attend dying patients to address such beliefs. But people do not readily volunteer them, health professionals rarely elicit them, and little research describes them.

We, therefore, performed a large exploratory study to begin characterizing patients' beliefs about what happens at the time of death. We assumed that culturethe values a group uses to interpret shared experiences and transmits across generations2, 3influences those beliefs.1, 410 We reasoned that, because death is a universal human experience, every culture must address its meaning.5 Prior studies showing ethnic cultural differences over advance care planning, life support, and other aspects of dying further supported our assumption.3, 8, 1012

Our interview study revealed occasional beliefs that may characterize Americans in general, some beliefs that may characterize only certain ethnic groups or genders, and many beliefs that may characterize only particular individuals.

METHODS

We constructed a semistructured interview, based on topics and questions from the end‐of‐life literature and our own encounters with dying patients and their survivors. The interview schedule covered topics such as the right time to die, what happens at death, and the afterlife. We pretested all questions before using them in interviews.

Study participants were older inpatients from the 3 largest American ethnic groupsMexican Americans (MAs), Euro‐Americans (EAs), and African Americans (AAs),13 as identified by a validated ethnic algorithm.14 We reasoned that age, current serious (though not necessarily terminal) illness, and having experienced the deaths of others had already prompted these older inpatients to think about death.11

Admission logs from 2 San Antonio, Texas, hospitals identified all patients, aged 50 to 79, who were admitted over a 9‐month period for any of 10 common internal medicine diagnoses. From these logs we selected interviewees by purposive sampling, a nonstatistical technique that ensured adequate participant numbers by ethnic group and gender.15, 16 We invited patients to interview only after their primary physicians gave permission.

Sixty of 65 participants who began interviews completed them, and 58 of the 60 could be classified into 1 of the 3 ethnic groups.14 These 58, who produced saturation for all themes mentioned by more than 5% of participants, constituted our analysis sample. Participants included 26 MAs (14 men, 12 women), 18 EAs (7 men, 11 women), and 14 AAs (7 men, 7 women). The most prevalent admitting diagnoses were congestive heart failure (19 participants), angina (17 participants), and pneumonia and chronic obstructive pulmonary disease (5 participants each). The 3 ethnic group samples had similar mean ages but differed in other ways (Table 1). MAs were typically Roman Catholic, educated through grade 7, and married; EAs were divided between Roman Catholic and Protestant, educated through grade 12, and mostly unmarried; and AAs were nearly all Protestant, educated through grade 11, and mostly unmarried. The genders within each ethnic group sample were similar by age, religion, and education (data not shown). AA men and women were also similar by marital status. However, MAs and EAs had more men than women who were married, and more women than men who were widowed.

Two trained, bilingual women1 MA and 1 EA, not specifically matched to participants by ethnic groupused the schedule of questions to interview participants. The interviews usually took place 3 days after admission, involved one‐on‐one engagement in participants' hospital rooms, were audiotaped, and lasted roughly 90 minutes. Most questions were open‐ended, allowing participants to express beliefs in their own words. For example, the open‐ended question, What do you think happens at the end of a person's life? introduced the topic covered here. To help focus responses, interviewers asked participants early on to name the closest person to them to have died. Interviewers then encouraged participants to describe their beliefs specifically in terms of that person's death. (We assumed the closeness of the relationships had kept those deaths vivid for participants even years afterward.) Most participants responded by referring to that person, but a few described their own death‐like experiences or their general beliefs about death. Interviewers probed as necessary to clarify responses.

Participants interviewed in Spanish or English as they preferred. Two MAs interviewed entirely in Spanish, 10 MAs interviewed partly in Spanish and partly in English, and all other participants interviewed entirely in English. Bilingual typists transcribed the audiotapes, translating any Spanish into English. Two bilingual experts independently confirmed the accuracy of the translations.

The coders who content‐analyzed responses varied by ethnic group, gender, and professional training. They conducted their analysis in 4 steps, each involving initial, independent, blinded reviews by 2 coders; comparison of interpretations; and consensual resolution of disagreements. First, 2 coders deleted any comments irrelevant to death or dying. Second, the same coders assembled the remaining passages by topic, such as beliefs about what happens at the time of death. Third, 1 original coder and a senior investigator naive to the responses identified themes within each topic. Fourth, that original coder and either of 2 new coders determined for each interview the presence or absence of each theme. Theme presence required agreement between the original coder and the new coder or, when they differed, agreement between one of these coders and an independent adjudicator. Lastly, the 3 authors aggregated themes into meaningful categories by consensus, and checked these categories for trustworthiness against participants' original comments.

We report the results for each theme primarily as the percentages of participants within these ethnic group or gender samples who mentioned the theme. Though content analyses are usually reported qualitatively, percentages have 2 advantages here.17 First, readers can see the percentages and judge for themselves the important similarities, differences, and patterns in the data. Second, percentages enable researchers to formulate their own questions for further study, say, questions based on the largest percentages or largest percentage differences in the data. We also report representative quotes to illustrate the depth and richness of participant responses.

The study complied with all institutional review board requirements.

RESULTS

Most participants in all 3 ethnic group samples named a parent as the closest person to them to have died (Table 2). Among these participants, MAs named their mothers overwhelmingly, but EAs and AAs named their mothers and fathers nearly equally. Other participants named siblings, children, other relatives, or friends. Of 13 widowed participants, only 4 named their spouses.

Thirty‐nine participants20 MAs, 13 EAs, and 6 AAsdescribed the closest person's time of death as either momentary (typically less than a minute) or prolonged (longer than a few minutes). More EAs described it as momentary than as prolonged (50% vs 22%). One EA woman said, We were right outside [the hospital room when my father suffered his cardiac arrest]. We knew, when the alarm went off on the heart monitor, it was the last time we'd see him alive. In contrast, MAs and AAs split roughly equally between describing death as momentary or as prolonged (MAs: 35% and 42%, respectively; AAs: 21% for both).

The ethnic group samples also differed about harm from treatments the closest person had received when dying. Of participants who specified such treatments, disproportionately more AAs (4 of 6) than MAs (0 of 5) or EAs (1 of 8) said those treatments had caused the person to suffer at the time of death. Recalling the prolonged resuscitation efforts on his father, one AA man said that the doctors were trying to keep him alive I said, Don't put his body through that.

Many participants went on to describe their beliefs about what happens at the time of death, about the physiologic signs that define that time, and about the senses that persist after death.

DISCUSSION

Beliefs about what happens at death surely affect the whole dying experience1 and may help guide end‐of‐life care. Yet for all the research on dying, the health professions literatures contain virtually no studies describing such beliefs.19 This exploratory study begins the descriptive process.

The results suggest a taxonomyhowever provisionalfor those beliefs (Table 6). Occasional beliefs, such as the one that death separates the dead from the living, may be held by many Americans and thereby characterize American society in general. Other beliefs may characterize only particular American ethnic groups or genders. Ethnically based beliefs may include, for MAs, the belief that death occurs when an external force, specifically God or Jesus, takes the dead person away; for EAs, the beliefs that death occurs in less than a minute and that physiologic signs define the time of death; and, for AAs, the belief that cooling of the body never defines the time of death. A gender‐based belief may be the belief of EA women that some senses persist after death. Still other beliefs may be idiosyncratic, varying among individuals without a demographic pattern. Idiosyncratic beliefs may include which particular physiologic sign defines the time of death.

The reader must consider these results in light of the study's assumptions, weaknesses, and strengths. Two assumptions were key: that participants expressed themselves fully (despite the difficulty of articulating such beliefs), and that the content analysts interpreted them accurately. Study weaknesses included possible conditioning of responses through prior interview questions, incomplete responsiveness about certain themes, nongeneralizability beyond these sample groups due to the purposive sampling, and educational and marital status differences as possible alternative explanations for the results. Important study strengths included the clinically important topic; the ill, older participants who had already faced death for themselves or others; the pretested, bilingual interview schedule; the open‐ended questions allowing participants to express beliefs in their own words; and the rigorous content analysis.

While indicating directions for future research, our results also provide several useful lessons for current end‐of‐life care. First, hospitalists and other health professionals who attend the dying must not assume they can accurately predict the beliefs of patients or survivors about what happens at the time of death. Many beliefs that participants expressed here neither we nor the health professionals to whom we have presented the results could have imagined beforehand. Health professionals simply cannot expect patients and survivors to hold the same beliefs as they. Furthermore, while some beliefs may characterize certain demographic groups in general, large idiosyncratic variation within groups compromises many demographically based predictions of particular individuals' beliefs. Thus, health professionals can probably learn such beliefs only by eliciting them individual by individual.18 Admittedly awkward, the necessary inquiries6, 20, 21 demand courage and patience, but, when done well, may help prepare all for the death.

Second, these inquiries require health professionals to cultivate techniques for eliciting people's beliefs sensitively and accurately.18 For example, health professionals might ask questions using the same terms for death (such as goes, passes, or rests) that the patient or survivors use. This technique encourages open expression of beliefs by assuring people that health professionals are listening carefully. Still, professionals must guard against misunderstandings that such terms may createparticularly by giving false hope or ignoring sad realities.

Third, armed with knowledge of patient and survivor beliefs, health professionals should tailor perimortem care accordingly. For example, because many people suffer pangs of separation at a death, health professionals should address those feelings expressly.22 Doing so may promote closure for the grieving.20, 2325 Health professionals should also attend to beliefs such as those about the signs and duration of the time of death. As this study showed, different people may time death by different physiologic signs. The patient with a warm body but no heartbeat may be simultaneously alive to someone who sees cooling of the body as defining the time of death, and dead to someone else who sees cessation of heartbeat as doing so.18, 26 Unfortunately, certain perimortem procedures, such as harvesting organs for transplantation, moving the body to the morgue, or performing an autopsy, require declaring death unambiguously at one specific time. When differences may exist over the signs or duration of death, the best way to avoid agonizing arguments or decisional paralysis when death occurs is to articulate any differences beforehand and to resolve them with a mutually acceptable management plan.27 Health professionals should also honor survivor beliefs about sentience of the dead. Unlike differences over signs and duration of death, differences over sentience of the dead may often be accommodated without definitive resolution. For example, although health professionals should treat any body respectfully, they must make special efforts to handle the dead body gently in case survivors believe it can still feel pain.

CONCLUSION

A patient's death is a climactic event for patient, survivors, and health professionals alike. It warrants careful management. Personal beliefs about what happens at death surely affect how patients anticipate it and what survivors remember of it. Compassionate perimortem care, therefore, must address those beliefs.28

Yet demographic characteristics such as ethnic group or gender offer only limited clues to such beliefs, making health professionals elicit them directly.4, 6, 9, 21 Discussions with patients and survivors about these beliefs are bound to create emotional discomfort for everybody, but health professionals may dispel much of it by demonstrating a sincere commitment to personalized end‐of‐life care, showing respect for the beliefs of patients and survivors,7, 21, 23 and accommodating those beliefs whenever possible.2, 28 The result may be the best of all possible outcomessensitive, respectful, and compassionate care for patients and survivors, and rewarding caregiving experiences for health professionals.20, 24, 25

Every health professional bears responsibility at some point for helping dying patients and their survivors face death spiritually and emotionally. But, because most Americans die in hospitals, that responsibility falls disproportionately to hospitalists and other hospital‐based health professionals.

Personal beliefs about what happens at death surely influence whether patients welcome or dread it, and whether survivors remember it with relief or regret.1 We believe, therefore, that competent, compassionate end‐of‐life care requires hospitalists and other health professionals who attend dying patients to address such beliefs. But people do not readily volunteer them, health professionals rarely elicit them, and little research describes them.

We, therefore, performed a large exploratory study to begin characterizing patients' beliefs about what happens at the time of death. We assumed that culturethe values a group uses to interpret shared experiences and transmits across generations2, 3influences those beliefs.1, 410 We reasoned that, because death is a universal human experience, every culture must address its meaning.5 Prior studies showing ethnic cultural differences over advance care planning, life support, and other aspects of dying further supported our assumption.3, 8, 1012

Our interview study revealed occasional beliefs that may characterize Americans in general, some beliefs that may characterize only certain ethnic groups or genders, and many beliefs that may characterize only particular individuals.

METHODS

We constructed a semistructured interview, based on topics and questions from the end‐of‐life literature and our own encounters with dying patients and their survivors. The interview schedule covered topics such as the right time to die, what happens at death, and the afterlife. We pretested all questions before using them in interviews.

Study participants were older inpatients from the 3 largest American ethnic groupsMexican Americans (MAs), Euro‐Americans (EAs), and African Americans (AAs),13 as identified by a validated ethnic algorithm.14 We reasoned that age, current serious (though not necessarily terminal) illness, and having experienced the deaths of others had already prompted these older inpatients to think about death.11

Admission logs from 2 San Antonio, Texas, hospitals identified all patients, aged 50 to 79, who were admitted over a 9‐month period for any of 10 common internal medicine diagnoses. From these logs we selected interviewees by purposive sampling, a nonstatistical technique that ensured adequate participant numbers by ethnic group and gender.15, 16 We invited patients to interview only after their primary physicians gave permission.

Sixty of 65 participants who began interviews completed them, and 58 of the 60 could be classified into 1 of the 3 ethnic groups.14 These 58, who produced saturation for all themes mentioned by more than 5% of participants, constituted our analysis sample. Participants included 26 MAs (14 men, 12 women), 18 EAs (7 men, 11 women), and 14 AAs (7 men, 7 women). The most prevalent admitting diagnoses were congestive heart failure (19 participants), angina (17 participants), and pneumonia and chronic obstructive pulmonary disease (5 participants each). The 3 ethnic group samples had similar mean ages but differed in other ways (Table 1). MAs were typically Roman Catholic, educated through grade 7, and married; EAs were divided between Roman Catholic and Protestant, educated through grade 12, and mostly unmarried; and AAs were nearly all Protestant, educated through grade 11, and mostly unmarried. The genders within each ethnic group sample were similar by age, religion, and education (data not shown). AA men and women were also similar by marital status. However, MAs and EAs had more men than women who were married, and more women than men who were widowed.

Two trained, bilingual women1 MA and 1 EA, not specifically matched to participants by ethnic groupused the schedule of questions to interview participants. The interviews usually took place 3 days after admission, involved one‐on‐one engagement in participants' hospital rooms, were audiotaped, and lasted roughly 90 minutes. Most questions were open‐ended, allowing participants to express beliefs in their own words. For example, the open‐ended question, What do you think happens at the end of a person's life? introduced the topic covered here. To help focus responses, interviewers asked participants early on to name the closest person to them to have died. Interviewers then encouraged participants to describe their beliefs specifically in terms of that person's death. (We assumed the closeness of the relationships had kept those deaths vivid for participants even years afterward.) Most participants responded by referring to that person, but a few described their own death‐like experiences or their general beliefs about death. Interviewers probed as necessary to clarify responses.

Participants interviewed in Spanish or English as they preferred. Two MAs interviewed entirely in Spanish, 10 MAs interviewed partly in Spanish and partly in English, and all other participants interviewed entirely in English. Bilingual typists transcribed the audiotapes, translating any Spanish into English. Two bilingual experts independently confirmed the accuracy of the translations.

The coders who content‐analyzed responses varied by ethnic group, gender, and professional training. They conducted their analysis in 4 steps, each involving initial, independent, blinded reviews by 2 coders; comparison of interpretations; and consensual resolution of disagreements. First, 2 coders deleted any comments irrelevant to death or dying. Second, the same coders assembled the remaining passages by topic, such as beliefs about what happens at the time of death. Third, 1 original coder and a senior investigator naive to the responses identified themes within each topic. Fourth, that original coder and either of 2 new coders determined for each interview the presence or absence of each theme. Theme presence required agreement between the original coder and the new coder or, when they differed, agreement between one of these coders and an independent adjudicator. Lastly, the 3 authors aggregated themes into meaningful categories by consensus, and checked these categories for trustworthiness against participants' original comments.

We report the results for each theme primarily as the percentages of participants within these ethnic group or gender samples who mentioned the theme. Though content analyses are usually reported qualitatively, percentages have 2 advantages here.17 First, readers can see the percentages and judge for themselves the important similarities, differences, and patterns in the data. Second, percentages enable researchers to formulate their own questions for further study, say, questions based on the largest percentages or largest percentage differences in the data. We also report representative quotes to illustrate the depth and richness of participant responses.

The study complied with all institutional review board requirements.

RESULTS

Most participants in all 3 ethnic group samples named a parent as the closest person to them to have died (Table 2). Among these participants, MAs named their mothers overwhelmingly, but EAs and AAs named their mothers and fathers nearly equally. Other participants named siblings, children, other relatives, or friends. Of 13 widowed participants, only 4 named their spouses.

Thirty‐nine participants20 MAs, 13 EAs, and 6 AAsdescribed the closest person's time of death as either momentary (typically less than a minute) or prolonged (longer than a few minutes). More EAs described it as momentary than as prolonged (50% vs 22%). One EA woman said, We were right outside [the hospital room when my father suffered his cardiac arrest]. We knew, when the alarm went off on the heart monitor, it was the last time we'd see him alive. In contrast, MAs and AAs split roughly equally between describing death as momentary or as prolonged (MAs: 35% and 42%, respectively; AAs: 21% for both).

The ethnic group samples also differed about harm from treatments the closest person had received when dying. Of participants who specified such treatments, disproportionately more AAs (4 of 6) than MAs (0 of 5) or EAs (1 of 8) said those treatments had caused the person to suffer at the time of death. Recalling the prolonged resuscitation efforts on his father, one AA man said that the doctors were trying to keep him alive I said, Don't put his body through that.

Many participants went on to describe their beliefs about what happens at the time of death, about the physiologic signs that define that time, and about the senses that persist after death.

DISCUSSION

Beliefs about what happens at death surely affect the whole dying experience1 and may help guide end‐of‐life care. Yet for all the research on dying, the health professions literatures contain virtually no studies describing such beliefs.19 This exploratory study begins the descriptive process.

The results suggest a taxonomyhowever provisionalfor those beliefs (Table 6). Occasional beliefs, such as the one that death separates the dead from the living, may be held by many Americans and thereby characterize American society in general. Other beliefs may characterize only particular American ethnic groups or genders. Ethnically based beliefs may include, for MAs, the belief that death occurs when an external force, specifically God or Jesus, takes the dead person away; for EAs, the beliefs that death occurs in less than a minute and that physiologic signs define the time of death; and, for AAs, the belief that cooling of the body never defines the time of death. A gender‐based belief may be the belief of EA women that some senses persist after death. Still other beliefs may be idiosyncratic, varying among individuals without a demographic pattern. Idiosyncratic beliefs may include which particular physiologic sign defines the time of death.

The reader must consider these results in light of the study's assumptions, weaknesses, and strengths. Two assumptions were key: that participants expressed themselves fully (despite the difficulty of articulating such beliefs), and that the content analysts interpreted them accurately. Study weaknesses included possible conditioning of responses through prior interview questions, incomplete responsiveness about certain themes, nongeneralizability beyond these sample groups due to the purposive sampling, and educational and marital status differences as possible alternative explanations for the results. Important study strengths included the clinically important topic; the ill, older participants who had already faced death for themselves or others; the pretested, bilingual interview schedule; the open‐ended questions allowing participants to express beliefs in their own words; and the rigorous content analysis.

While indicating directions for future research, our results also provide several useful lessons for current end‐of‐life care. First, hospitalists and other health professionals who attend the dying must not assume they can accurately predict the beliefs of patients or survivors about what happens at the time of death. Many beliefs that participants expressed here neither we nor the health professionals to whom we have presented the results could have imagined beforehand. Health professionals simply cannot expect patients and survivors to hold the same beliefs as they. Furthermore, while some beliefs may characterize certain demographic groups in general, large idiosyncratic variation within groups compromises many demographically based predictions of particular individuals' beliefs. Thus, health professionals can probably learn such beliefs only by eliciting them individual by individual.18 Admittedly awkward, the necessary inquiries6, 20, 21 demand courage and patience, but, when done well, may help prepare all for the death.

Second, these inquiries require health professionals to cultivate techniques for eliciting people's beliefs sensitively and accurately.18 For example, health professionals might ask questions using the same terms for death (such as goes, passes, or rests) that the patient or survivors use. This technique encourages open expression of beliefs by assuring people that health professionals are listening carefully. Still, professionals must guard against misunderstandings that such terms may createparticularly by giving false hope or ignoring sad realities.

Third, armed with knowledge of patient and survivor beliefs, health professionals should tailor perimortem care accordingly. For example, because many people suffer pangs of separation at a death, health professionals should address those feelings expressly.22 Doing so may promote closure for the grieving.20, 2325 Health professionals should also attend to beliefs such as those about the signs and duration of the time of death. As this study showed, different people may time death by different physiologic signs. The patient with a warm body but no heartbeat may be simultaneously alive to someone who sees cooling of the body as defining the time of death, and dead to someone else who sees cessation of heartbeat as doing so.18, 26 Unfortunately, certain perimortem procedures, such as harvesting organs for transplantation, moving the body to the morgue, or performing an autopsy, require declaring death unambiguously at one specific time. When differences may exist over the signs or duration of death, the best way to avoid agonizing arguments or decisional paralysis when death occurs is to articulate any differences beforehand and to resolve them with a mutually acceptable management plan.27 Health professionals should also honor survivor beliefs about sentience of the dead. Unlike differences over signs and duration of death, differences over sentience of the dead may often be accommodated without definitive resolution. For example, although health professionals should treat any body respectfully, they must make special efforts to handle the dead body gently in case survivors believe it can still feel pain.

CONCLUSION

A patient's death is a climactic event for patient, survivors, and health professionals alike. It warrants careful management. Personal beliefs about what happens at death surely affect how patients anticipate it and what survivors remember of it. Compassionate perimortem care, therefore, must address those beliefs.28

Yet demographic characteristics such as ethnic group or gender offer only limited clues to such beliefs, making health professionals elicit them directly.4, 6, 9, 21 Discussions with patients and survivors about these beliefs are bound to create emotional discomfort for everybody, but health professionals may dispel much of it by demonstrating a sincere commitment to personalized end‐of‐life care, showing respect for the beliefs of patients and survivors,7, 21, 23 and accommodating those beliefs whenever possible.2, 28 The result may be the best of all possible outcomessensitive, respectful, and compassionate care for patients and survivors, and rewarding caregiving experiences for health professionals.20, 24, 25

Every health professional bears responsibility at some point for helping dying patients and their survivors face death spiritually and emotionally. But, because most Americans die in hospitals, that responsibility falls disproportionately to hospitalists and other hospital‐based health professionals.

Personal beliefs about what happens at death surely influence whether patients welcome or dread it, and whether survivors remember it with relief or regret.1 We believe, therefore, that competent, compassionate end‐of‐life care requires hospitalists and other health professionals who attend dying patients to address such beliefs. But people do not readily volunteer them, health professionals rarely elicit them, and little research describes them.

We, therefore, performed a large exploratory study to begin characterizing patients' beliefs about what happens at the time of death. We assumed that culturethe values a group uses to interpret shared experiences and transmits across generations2, 3influences those beliefs.1, 410 We reasoned that, because death is a universal human experience, every culture must address its meaning.5 Prior studies showing ethnic cultural differences over advance care planning, life support, and other aspects of dying further supported our assumption.3, 8, 1012

Our interview study revealed occasional beliefs that may characterize Americans in general, some beliefs that may characterize only certain ethnic groups or genders, and many beliefs that may characterize only particular individuals.

METHODS

We constructed a semistructured interview, based on topics and questions from the end‐of‐life literature and our own encounters with dying patients and their survivors. The interview schedule covered topics such as the right time to die, what happens at death, and the afterlife. We pretested all questions before using them in interviews.

Study participants were older inpatients from the 3 largest American ethnic groupsMexican Americans (MAs), Euro‐Americans (EAs), and African Americans (AAs),13 as identified by a validated ethnic algorithm.14 We reasoned that age, current serious (though not necessarily terminal) illness, and having experienced the deaths of others had already prompted these older inpatients to think about death.11

Admission logs from 2 San Antonio, Texas, hospitals identified all patients, aged 50 to 79, who were admitted over a 9‐month period for any of 10 common internal medicine diagnoses. From these logs we selected interviewees by purposive sampling, a nonstatistical technique that ensured adequate participant numbers by ethnic group and gender.15, 16 We invited patients to interview only after their primary physicians gave permission.

Sixty of 65 participants who began interviews completed them, and 58 of the 60 could be classified into 1 of the 3 ethnic groups.14 These 58, who produced saturation for all themes mentioned by more than 5% of participants, constituted our analysis sample. Participants included 26 MAs (14 men, 12 women), 18 EAs (7 men, 11 women), and 14 AAs (7 men, 7 women). The most prevalent admitting diagnoses were congestive heart failure (19 participants), angina (17 participants), and pneumonia and chronic obstructive pulmonary disease (5 participants each). The 3 ethnic group samples had similar mean ages but differed in other ways (Table 1). MAs were typically Roman Catholic, educated through grade 7, and married; EAs were divided between Roman Catholic and Protestant, educated through grade 12, and mostly unmarried; and AAs were nearly all Protestant, educated through grade 11, and mostly unmarried. The genders within each ethnic group sample were similar by age, religion, and education (data not shown). AA men and women were also similar by marital status. However, MAs and EAs had more men than women who were married, and more women than men who were widowed.

Two trained, bilingual women1 MA and 1 EA, not specifically matched to participants by ethnic groupused the schedule of questions to interview participants. The interviews usually took place 3 days after admission, involved one‐on‐one engagement in participants' hospital rooms, were audiotaped, and lasted roughly 90 minutes. Most questions were open‐ended, allowing participants to express beliefs in their own words. For example, the open‐ended question, What do you think happens at the end of a person's life? introduced the topic covered here. To help focus responses, interviewers asked participants early on to name the closest person to them to have died. Interviewers then encouraged participants to describe their beliefs specifically in terms of that person's death. (We assumed the closeness of the relationships had kept those deaths vivid for participants even years afterward.) Most participants responded by referring to that person, but a few described their own death‐like experiences or their general beliefs about death. Interviewers probed as necessary to clarify responses.

Participants interviewed in Spanish or English as they preferred. Two MAs interviewed entirely in Spanish, 10 MAs interviewed partly in Spanish and partly in English, and all other participants interviewed entirely in English. Bilingual typists transcribed the audiotapes, translating any Spanish into English. Two bilingual experts independently confirmed the accuracy of the translations.

The coders who content‐analyzed responses varied by ethnic group, gender, and professional training. They conducted their analysis in 4 steps, each involving initial, independent, blinded reviews by 2 coders; comparison of interpretations; and consensual resolution of disagreements. First, 2 coders deleted any comments irrelevant to death or dying. Second, the same coders assembled the remaining passages by topic, such as beliefs about what happens at the time of death. Third, 1 original coder and a senior investigator naive to the responses identified themes within each topic. Fourth, that original coder and either of 2 new coders determined for each interview the presence or absence of each theme. Theme presence required agreement between the original coder and the new coder or, when they differed, agreement between one of these coders and an independent adjudicator. Lastly, the 3 authors aggregated themes into meaningful categories by consensus, and checked these categories for trustworthiness against participants' original comments.

We report the results for each theme primarily as the percentages of participants within these ethnic group or gender samples who mentioned the theme. Though content analyses are usually reported qualitatively, percentages have 2 advantages here.17 First, readers can see the percentages and judge for themselves the important similarities, differences, and patterns in the data. Second, percentages enable researchers to formulate their own questions for further study, say, questions based on the largest percentages or largest percentage differences in the data. We also report representative quotes to illustrate the depth and richness of participant responses.

The study complied with all institutional review board requirements.

RESULTS

Most participants in all 3 ethnic group samples named a parent as the closest person to them to have died (Table 2). Among these participants, MAs named their mothers overwhelmingly, but EAs and AAs named their mothers and fathers nearly equally. Other participants named siblings, children, other relatives, or friends. Of 13 widowed participants, only 4 named their spouses.

Thirty‐nine participants20 MAs, 13 EAs, and 6 AAsdescribed the closest person's time of death as either momentary (typically less than a minute) or prolonged (longer than a few minutes). More EAs described it as momentary than as prolonged (50% vs 22%). One EA woman said, We were right outside [the hospital room when my father suffered his cardiac arrest]. We knew, when the alarm went off on the heart monitor, it was the last time we'd see him alive. In contrast, MAs and AAs split roughly equally between describing death as momentary or as prolonged (MAs: 35% and 42%, respectively; AAs: 21% for both).

The ethnic group samples also differed about harm from treatments the closest person had received when dying. Of participants who specified such treatments, disproportionately more AAs (4 of 6) than MAs (0 of 5) or EAs (1 of 8) said those treatments had caused the person to suffer at the time of death. Recalling the prolonged resuscitation efforts on his father, one AA man said that the doctors were trying to keep him alive I said, Don't put his body through that.

Many participants went on to describe their beliefs about what happens at the time of death, about the physiologic signs that define that time, and about the senses that persist after death.

DISCUSSION

Beliefs about what happens at death surely affect the whole dying experience1 and may help guide end‐of‐life care. Yet for all the research on dying, the health professions literatures contain virtually no studies describing such beliefs.19 This exploratory study begins the descriptive process.

The results suggest a taxonomyhowever provisionalfor those beliefs (Table 6). Occasional beliefs, such as the one that death separates the dead from the living, may be held by many Americans and thereby characterize American society in general. Other beliefs may characterize only particular American ethnic groups or genders. Ethnically based beliefs may include, for MAs, the belief that death occurs when an external force, specifically God or Jesus, takes the dead person away; for EAs, the beliefs that death occurs in less than a minute and that physiologic signs define the time of death; and, for AAs, the belief that cooling of the body never defines the time of death. A gender‐based belief may be the belief of EA women that some senses persist after death. Still other beliefs may be idiosyncratic, varying among individuals without a demographic pattern. Idiosyncratic beliefs may include which particular physiologic sign defines the time of death.

The reader must consider these results in light of the study's assumptions, weaknesses, and strengths. Two assumptions were key: that participants expressed themselves fully (despite the difficulty of articulating such beliefs), and that the content analysts interpreted them accurately. Study weaknesses included possible conditioning of responses through prior interview questions, incomplete responsiveness about certain themes, nongeneralizability beyond these sample groups due to the purposive sampling, and educational and marital status differences as possible alternative explanations for the results. Important study strengths included the clinically important topic; the ill, older participants who had already faced death for themselves or others; the pretested, bilingual interview schedule; the open‐ended questions allowing participants to express beliefs in their own words; and the rigorous content analysis.

While indicating directions for future research, our results also provide several useful lessons for current end‐of‐life care. First, hospitalists and other health professionals who attend the dying must not assume they can accurately predict the beliefs of patients or survivors about what happens at the time of death. Many beliefs that participants expressed here neither we nor the health professionals to whom we have presented the results could have imagined beforehand. Health professionals simply cannot expect patients and survivors to hold the same beliefs as they. Furthermore, while some beliefs may characterize certain demographic groups in general, large idiosyncratic variation within groups compromises many demographically based predictions of particular individuals' beliefs. Thus, health professionals can probably learn such beliefs only by eliciting them individual by individual.18 Admittedly awkward, the necessary inquiries6, 20, 21 demand courage and patience, but, when done well, may help prepare all for the death.

Second, these inquiries require health professionals to cultivate techniques for eliciting people's beliefs sensitively and accurately.18 For example, health professionals might ask questions using the same terms for death (such as goes, passes, or rests) that the patient or survivors use. This technique encourages open expression of beliefs by assuring people that health professionals are listening carefully. Still, professionals must guard against misunderstandings that such terms may createparticularly by giving false hope or ignoring sad realities.

Third, armed with knowledge of patient and survivor beliefs, health professionals should tailor perimortem care accordingly. For example, because many people suffer pangs of separation at a death, health professionals should address those feelings expressly.22 Doing so may promote closure for the grieving.20, 2325 Health professionals should also attend to beliefs such as those about the signs and duration of the time of death. As this study showed, different people may time death by different physiologic signs. The patient with a warm body but no heartbeat may be simultaneously alive to someone who sees cooling of the body as defining the time of death, and dead to someone else who sees cessation of heartbeat as doing so.18, 26 Unfortunately, certain perimortem procedures, such as harvesting organs for transplantation, moving the body to the morgue, or performing an autopsy, require declaring death unambiguously at one specific time. When differences may exist over the signs or duration of death, the best way to avoid agonizing arguments or decisional paralysis when death occurs is to articulate any differences beforehand and to resolve them with a mutually acceptable management plan.27 Health professionals should also honor survivor beliefs about sentience of the dead. Unlike differences over signs and duration of death, differences over sentience of the dead may often be accommodated without definitive resolution. For example, although health professionals should treat any body respectfully, they must make special efforts to handle the dead body gently in case survivors believe it can still feel pain.

CONCLUSION

A patient's death is a climactic event for patient, survivors, and health professionals alike. It warrants careful management. Personal beliefs about what happens at death surely affect how patients anticipate it and what survivors remember of it. Compassionate perimortem care, therefore, must address those beliefs.28

Yet demographic characteristics such as ethnic group or gender offer only limited clues to such beliefs, making health professionals elicit them directly.4, 6, 9, 21 Discussions with patients and survivors about these beliefs are bound to create emotional discomfort for everybody, but health professionals may dispel much of it by demonstrating a sincere commitment to personalized end‐of‐life care, showing respect for the beliefs of patients and survivors,7, 21, 23 and accommodating those beliefs whenever possible.2, 28 The result may be the best of all possible outcomessensitive, respectful, and compassionate care for patients and survivors, and rewarding caregiving experiences for health professionals.20, 24, 25