Cultural Issues in Death and Dying

Kathryn L. Braun DrPH*, Rhea Nichols MSW

Although all of us experience death, not all of us think about death show generational differences in response to death, with issei (first or respond to death the same way. Thisstudy begins to explore how generation) respondents more likely to practice customs and tradi cultural traditions, education, and tenure in Hawaii impact views of tions of Japan compared to sansei (third generation) and yonsei advanced directives, organ donation, suicide, and euthanasia. This (fourth generation). Students of traditional Chinese culture have information is useful to physicians who need to engage patients and reported that Chinese are often hesitant to talk about death, as this families indiscussions about death and end-of-life decision making. 45 importance of is considered bad 6luck. Other reports describe the funeral rituals- in Chinese culture, from determining the right day of Introduction burial, to burning paper money to send with the deceased on his/her All people have, and will, experience death. But not all people journey. If a person is buried without strict adherence to proper view death or respond to death in the same way. As we increase our 67funeral rites, a hungry ghost may return to plague the 8living. The life expectancy’ and our ability to prolong life artificially, issues -carrying-out of traditional death rituals is considered the most surrounding death and dying become more controversial. How do important act of filial piety among Vietnamese, from the rite of different cultures look at death? What factors, besides culture, feeding the deceased to the rite of reburial, where bones of the impact one’s perceptions of issues like advanced directives, organ deceased are collected, washed and preserved in a sacred jar for donation, suicide, euthanasia? These questions were asked in a reburial. Ancestor worship is also important, and many Vietnam qualitative study of death and dying in Honolulu among five Asian 9ese Americans tend ancestral altars at ’°home. Very little literature and Pacific Islander (API) groups—Chinese, Filipinos, Japanese, appears about Filipino Americans. Several9 cross-cultural studies of Native Hawaiians, and Vietnamese. suicide, however, suggest that suicide rates among Chinese, Japa Expanding knowledge of cultural issues in death and dying is nese, Filipino, and Vietnamese Americans are lower than suicide important for two major reasons. First, as health care professionals, rates of Caucasian Americans and lower than those of their compa we need to understand and respect cultural differences if we hope to triots at 12home.’’- provide care that is relevant and acceptable to our clients. Second, In summary, while some information is available about traditional as educators, we need to encourage individuals to share their death rituals, literature on how these traditions are practiced in the differences with each other as our society develops policies and U.S. and on views of suicide, euthanasia, advanced directives, and social structures related to end-of-life decision making. This is organ donation is limited. This study begins to fill the gap by especially crucial given the recent decisions by the 2nd and 9th presenting information from interviews on death and dying prac Circuit Courts supporting the right to physician-assisted suicide. tices with five Asian American and Pacific Islander groups in Although the Supreme Court has issued a stay on these decisions, Hawaii—Chinese, Filipinos, Japanese, Native Hawaiians, and Viet many feel it isonly a matter of time before assisted dying is legalized namese. in the United States. -23 Method Literature Review Data were gathered from July 1995to February 1996 through in- Literature and educational materials on cultural-specific responses depth interviews with individuals of Chinese, Filipino, Japanese, to death and dying among API Americans are scarce. Even where Native Hawaiian, and Vietnamese descent. From each of the ethnic literature exists, it most often focuses on Japanese Americans and groups studied, two key informants (a religious leader and a bilin gual health/social service professional) and five to eight focus group participants were interviewed. Key informants were selected be cause of their level of knowledge about their community’s practices in this area; they were generally older adults who were well educated, bilingual, and respected by their communities as experts. Focus group members were identified by key informants and were affiliated with the religious and/or social service groups represented by the key informants. Because focus group members in the Chi nese, Filipino, and Vietnamese groups were first-generation immi grants to the U.S., many were interviewed with the assistance of Addressrepdntrequeststo: bilingual students. * KathrynL.Braun,DrPH The study’s interview questions explored six broad areas includ AssociateProfessorof PublicHealthand Director ing: 1) the underlying philosophy/religion influencing death and CenteronAging dying in the culture; 2) burial, memorial services, and bereavement; UniversityofHawaii 1960East-WestRoad 3) suicide and euthanasia; 4) advanced directives and organ dona Honolulu,HI 96822 tion; 5) how beliefs/practices have changed over time; and 6) advice (808)956-5768 for health care professionals working with dying patients from the Fax(808)956-9582 [email protected] culture. Transcripts of the interviews were analyzed for common

HAWAIIMEDICALJOURNAL,VOL55, DECEMBER1996 260 and differentiating themes. An initial draft of the summary of 1965, Filipino immigration accelerated and, in 1990, Filipinos findings for each group was sent to one or more of the key comprised about 15% of the state’s population.’ 19-20 informants, who were asked to provide corrections and/or to vali The Vietnamese are among our most4 recent immigrant groups, date that the information contained therein was accurate to the best first arriving in the U.S. after the fall’ of Saigon to the Vietnamese of their knowledge. Communists in 1975. A second group, called “boat people,” are The study identified a number of differences among and within those who fled Communist rule on foot or boat, often spending time the ethnic groups, a full description of which is provided else in refugee camps before relocation. Established in the early 1980s, where.’ The current paper presents information from the study that Vietnam’s Orderly Departure Program allowed controlled immi is3 relevant to the more controversial aspects of death and dying— gration directly from Vietnam for political prisoners, Amer-Asians, advanced directives (e.g., will, living wills, and documents giving and those whose family members were already U.S. citizens. The power of attorney for health care decisions), organ donation, sui 1990 Census estimated the Vietnamese population in the U.S. at cide, and euthanasia (e.g., withholding treatment, withdrawing 614,547, a 134% increase over 1980. Vietnamese comprise less treatment, and aiding death). than 1% of the Hawaii’s population.’

Findings Traditional Beliefs about42 Death Historical Background of the Five Ethnic Groups Native Hawaiian beliefs’ about death and dying are influenced by The Native Hawaiian people (orkanaka maoli) are indigenous to both Native Hawaiian traditions and Christianity. A focus group the islands of Hawaii, establishing their arrival as early as 100A.D. member explained that death is accepted as a part of life by most They are of Polynesian extraction, sharing a common ancestry with Native Hawaiians, who see an “openness” between this life and the the indigenous people across the South Pacific. Following contact next. For example, a participant explained that when we complete with the West, the native population was reduced drastically as our tasks on earth, it is time to die and “move on to the next realm.” Native Hawaiians contracted and died from newly imported infec Others believed that, upon death, people are reunited with loved tious diseases. This loss of cheap labor led to the “importation” of ones who have died before. We heard several stories about commu labor from Asia and this, in turn, helped contribute to the erosion of nication between realms, e.g., either dreaming about or seeing signs Native Hawaiian traditions and customs. Since the 1960s, the state about the deceased. We also heard that touching a dead body may has seen an increased appreciation of Hawaiian heritage and a make you sick, as the dead body is “empty and can take the living resurgence of the traditional language and cultural traditions. In person’s mana.” 1990, Native Hawaiians comprised about 19 percent of the state’s Chinese participants reported that their traditions are influenced population.’ by three religions—Confucianism, Taoism, and Buddhism. In Con The Chinese were the first of the Asian groups to immigrate to fucianism, it is believed that the body should be preserved in order ”45Hawaii in significant numbers, arriving in the mid-to-late-I 800s to torespect one’s parents, and that ancestor worship is very important. work on sugar plantations. Fears about loss ofjobs for Caucasians In Taoism, longevity is emphasized and stimulates discussions stimulated a series of laws that substantially reduced Chinese about the right foods to eat in order to maintain health and obtain immigration, including the Chinese Exclusion Act of 1882 and the long life. The Buddhist religion teaches that one must be good in the Oriental Exclusion Act of 1924. Immigration restrictions began to present life in order to be reincarnated on a higher level in the next relax in the 1940s, in part to recognize China’s position as aU.S. ally life. A premature death is considered bad luck, as this is thought to in World War II. Since the Immigration Act of 1965,which allowed mean that someone has done something bad and is being punished. 20,000 immigrants per year per country, Chinese immigration from To prevent this, one should avoid offending anyone, treat parents Taiwan, mainland China, and Hong Kong has greatly increased. In with respect (filial piety), and take care of the older generation in this 1990, about 6 percent of Hawaii’s population was Chinese.’ life. The first major wave of Japanese immigration started after the Vietnamese Buddhist beliefs are similar to traditional Chinese 467 beliefs, as China dominated Vietnam for many centuries. The Chinese Exclusion Act of 1882 when Hawaii sugar” plantations looked to Japan for a new source of cheap labor. Almost’ 150,000 concept of karma is important. While death is the final destruction Japanese came to Hawaii between 1882 and 1908, when the of the body, the soul remains and is reborn; but how a person is Gentlemen’s Agreement restricted immigration from Japan to wives reborn depends on his/her actions. If a person dies a terrible death of Japanese men already in the U.S. All Japanese immigration was (through accident or illness), it is because he/she is being punished effectively halted in 1924 with the Oriental Exclusion Act. It for bad behavior in this life or a past life. A child may die because restarted in the 1950s with the immigration of Japanese wives of he/she is paying for a misdeed in a past life or for a misdeed of U.S. servicemen. Although the Immigration Act of 1965 allowed someone else in the family. If a child commits a crime, a parent may 20,000 per country to immigrate to the U.S., fewer than 5,000 have to pay for it in his next life. Many children are very good so that Japanese nationals have chosen to immigrate each year. Today, their parents will have a good next life. The goal is to be reborn as two-thirds of all Japanese Americans are U.S. born, compared to a person without karmic debts and then to continue achieving a about 37% of all API Americans, and about half marry non- higher level of rebirth. You can tell when someone has been reborn Japanese. In 1990, about 23 percent of the state’s population was at a higher level because they are “good-looking and live a comfort Japanese.’ 18 able life.” While Buddhism is the dominant religion, a number of 4 Filipino immigration began following U.S. victory over Spain in Vietnamese in the U.S. are Catholic, a remnant of an 80-year ’1892, at which time the Philippines was ceded to the U.S. As a U.S. occupation by the French. territory, Filipinos were considered U.S. nationals and, therefore, Japanese Buddhist participants said that death is a part of the immigration was unrestricted. Almost 120,000 Filipinos came to natural process of life and is not a finality. In fact, the present world work on Hawaii sugar plantations between 1906 and 1934. Immi is painful and unsatisfactory because of the worldly attachments gration was severely curtailed in 1935, when the Philippines was people have to it. The next world is a better place because people are granted commonwealth status. But with the Immigration Act of relieved of those attachments and there is peace. It is felt that when

HAWAIIMEDICALJOURNAL, VOL55, DECEMBER 1996 261 a person who has faithfully listened to the teachings of the Buddha “Filipinos don’t like to talk about death or funerals; at the most, they dies, his/her soul can be reborn into this better place, sometimes may have picked a cemetery plot.” The youngest focus group called the Pure Land. There is a belief in Buddhism that the last member said that she had discussed life support with her father, who thoughts of a person before his or her death determines the rebirth. told her he would not want to be sustained by machines. However, If one is confused or angry at the time of death, one’s soul would she has been unable to get him to put these wishes in the form of a likely be reborn in a different (worse) state than if this person had living will. died peacefully. Despite the belief that karma affects life events, Very few of the Vietnamese participants were familiar with living study participants said that personal karma is not openly discussed wills or with giving power of attorney. In response to this question, and that it is not appropriate to say, “you must accept it because it we heard that “in planning for death, people pray a lot” and that is your karma.” Along with personal karma, there is also acollective people should put aside money to cover funeral expenses. Another karma over which there is no control (hurricanes, typhoons, war, participant thought it was a good idea to prepare a will dispensing etc.). We also heard that many Japanese in Hawaii left Buddhism property. following Japan’s bombing of Pearl Harbor in World War II, as Japanese Buddhist ministers (and others in leadership positions) Organ Donation were sent to internment camps. Some Japanese Americans became Native Hawaiian participants had varying feelings about organ Christians at this time and others stopped participating in organized donation. One was in favor of it and had designated so on her religion altogether. driver’s license. Another said she would not donate her organs, nor Our Filipino informants said that the Catholic religion had an would any of her family, because she believed that God made her important influence on death and dying in Filipino culture. This is body and she should leave this world with her body as it is. The not surprising given that the vast majority of Filipinos are Catholic others said they were unsure about donating organs, although they as a result of 330 years of Spanish rule. In Catholicism, there is no recognized the merit in it. need to fear death “because the Lord has created us and will be the Chinese participants said that resistance to organ donation stems one to take our lives back. If a person is worthy, and has followed from the desire to die intact and from the Confucian belief that one’s the doctrines of the Lord, he/she will go to heaven after death. organs aregifts from one’s parents and that it would be disrespectful Sinners will go to hell or purgatory.” to destroy them or give them away. There was also some concern that people who receive donated organs may be reborn with the Advance Directives donor’s face. Of the participants, one reported carrying a donor card Native Hawaiian participants agreed that few Native Hawaiians and two others were supportive of organ donation but had not taken talk about wills or living wills. A reason was that the property any action to indicate so. Another said that it “gives me a creepy automatically goes to the spouse and then to the children, so there feeling to think that someone would cut me up” so he was against was not need for a will. We heard that some members of the older it. One doubted whether doctors who needed kidneys for another generation may believe that talking about death will bring on death. patient would treat the donor’s disease or injury aggressively. The Participants in research, however, said that they knew many Native remaining Chinese participants were unsure. Hawaiians who do make their wishes concerning death known to Few Vietnamese informants were in favor of organ donation as their loved ones. For example, a participant had already told her they did not want to be born into the next life missing an organ. One family about the kind of funeral she wants when she dies, including said it was unsanitary and another thought that it was scary. the foods to be served. According to the Buddhist reverend we interviewed, Buddhism Chinese participants noted that Chinese people have traditionally makes no direct reference to organ donation so it is not known if thought it was bad luck totalk about death. Recent immigrants noted organ donation is an acceptable practice. Theoretically, it would be that living wills are not promoted in Hong Kong or in mainland a good idea since in death, the body means nothing (only the soul is China. The younger generation of Chinese in Asia and the U.S., reborn) and organ donation may help another. Although the rever along with the long-time U.S. residents, are more Westernized and end thought that donating organs to help others was a “wonderful more open to advanced planning. In addition, we heard that Chinese idea,” he thought that few in his congregation would consider it. become very interested in living wills once they have witnessed our Among the Japanese Buddhists, resistance to organ donation ability to prolong life. For example, a participant stated that, as a stems from the hesitance to deface one’s body, which is a sacred gift result of her grandfather lingering in a coma for 4 years, both of her from the ancestors. It was also believed that you “have to go whole.” parents decided to get living wills. Although participants were Again it was noted that Buddhist thinking would support organ generally in favor of living wills, and believed that the best time to donation, as only the soul is reborn and it would be good to help complete them was when a person was young and healthy, few had others by donating organs. Participants, however, said that the topic them. was not openly discussed. They were willing to discuss it with us Among Japanese Buddhist participants, there was a general and one participant changed her mind in favor of organ donation consensus that planning for death was a good idea. For Buddhists, when she learned that no one would be able to see any difference in we heard, “if you don’t think about death, you cannot live.” On the her body at the mortuary after the organ was removed (i.e., the body practical side, participants thought that most Japanese Americans would look intact). saw the usefulness of advanced directives and many had already The Filipino participants also gave a variety of responses. Theo executed such documents, although the Buddhist temple does not retically, helping others by donating an organ would be good and, yet have a specific stand on advanced directives. if only the soul goes to heaven, why not give body parts to the living Among the Filipino participants, the most educated (including a who are in need. In reality, few of the first generation Filipino Catholic nun) had thought about and/or executed living wills and Americans had considered the idea or were open it. The more funeral plans. Others, who were linked with social service agencies, educated participants and the second generation participants had remembered a lecture by an attorney who helped many of them thought about organ donation and were willing to consider the idea, complete living wills. However, the newer immigrants and those although none were official organ donors. with the least education were quiet on the subject, finally saying that

HAWAIIMEDICALJOURNAL, VOL 55, DECEMBER 1996 262

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the of the

are ethnic also Vietnamese

into need

and

efforts

physician-assisted

On to

to informants

suicide, reduced attainment,

existing

for

role “helping that and

concept study Several the about by

affected should of

the for have to group.

the will

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this

had

prolonged

the recovery”

of become of importance group.

change

in Catholicism “is

that education of

about of

larger

otherhand, be

become into

physician-assisted was

physician-assisted explaining participants

death study thought could

such

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and

literature centering reborn”

and include

assessed informants

others.”

by respondents.

“pulling

traditions

and

educational

end-of-life constrained would using

Thus,

economics, as population.

their

euthanasia. different

negative

a organ

individual

provides

and be

may

number

life a

about

or larger

trigger incorporated

proponents the

suicide terminology on both and

handful They dying—advanced findings and

also

discussions

bejustified support.

the

donors? “goes

and the

cultural values that

impressive

death-related

connotations

ethnic

respected.

celebrating

decision the living

a study of

emphasize be Findings and

more strategies

plug also

Future for out-of-pocket

modest religion—and

The

could

within factors—years to

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suicide.

a of

from

inherent

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changing Similarly,

heaven.”

believe

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wills, findings on

focus

into

(perhaps

about

making physician- be the

studies

MEDICAL

the

along amount economic churches,

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JOURNAL,

that ex

ask

and are

the are the

it of in

264

Acknowledgments

2. References research. Office 3. 1. participants 4. part editorial also 6. 5. 7. Gerontological literature 8.

10.

12. 11.

14. 13.

15.

17. 16. 20. 19. 18. 21.

VOL

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