3. Since we don't have a specialist in survey study in my institution, I asked a Japanese researcher for collaboration, who is also an expert in a questionnaire study in palliative care. He has taken a step-wise approach, from qualitative study to quantitative survey study, and developed and validated "Good Death Inventory (GDI)" in Japan. Based on the gracious JMSA scholarship of $5000, he anticipated we could potentially do survey of up to 500 participants. Currently we are discussing actual step-wise design.

Step 1 (with JMSA scholarship):
Small cross-sectional survey of general public (Japanese Americans with or without Americans as control) to determine how the levels of acculturation impact the perception of importance of each item of "good death" questionnaire. We would like to ask JASSI and JAA for help in identifying potential respondents. An acculturation tool validated among the Japanese Americans will be utilized to assess the level of acculturation. A "good death" questionnaire that was used among Japanese general public previously will be utilized to make comparison of our findings with the Japanese counterpart possible.

Step 2: We may modify and validate the "good death" questionnaire in the Japanese American population based on step 1. Then, utilizing the modified version, a cross-sectional survey study will be conducted to evaluate whether cancer patients with Japanese origin have "good death" from bereaved family members' perspective.

Now I'm writing a protocol of Step 1 under the supervision of the Japanese researcher, my fellowship program mentor, and Dr. Kuwama. Below please find a synopsis of our project:

Title of Study:

Acculturation and factors considered important for good death among Japanese American general population

Investigators

1. Masanori Mori, MD; Steven Grunberg, MD (Fletcher Allen Health Care/University of Vermont College of Medicine)
2. Kuwama Yuichiro, MD (Beth Israel Medical Center, Japanese Medical Practice)
3. Mitsunori Miyashita, RN, PhD (University of Tohoku)

Concept and Rationale:

Clinicians in culturally diverse settings commonly describe ethical dilemmas due to cultural variation in end-of-life (EOL) preferences and perceptions of “good death”¹. As the U.S. population becomes more diverse, investigation into cultural diversity is increasing^1-4.  The long history of Japanese immigration to the U.S. yields a wide range of generations, from first to fifth, with multiple levels of acculturation¹. Several studies have reported some distinct effects of acculturation on attitudes toward EOL care and decision making at EOL in selected samples of healthy elderly Japanese Americans^{1, 5, 6}. In general, preference for autonomy and disclosure, willingness to forgo care, and views of advance care planning shift toward western values as Japanese Americans acculturate^{1, 5, 6}.

Cancer is the leading cause of death in Japan, and the second-leading cause of death in the US. Many advanced cancer patients experience severe physical, psychosocial, and spiritual suffering at the EOL. Achieving a “good death” is one of the most important goals of palliative care in both eastern and western countries⁷. In Japan, Good Death Inventory (GDI) has been developed and validated to measure good death from bereaved family’s perspective⁷. They have been used nationwide to evaluate the quality of dying and death. Several questionnaire tools have also been developed in the US^8-10. These studies have shown that the majority of factors are considered important in both countries. However, several differences have been detected, such as the importance of religious belief, control over the future, and unawareness of death. Since multiple levels of acculturation exist in the Japanese American population, it is important for health-care professionals to predict patients’ individual perceptions of “good death”. However, little is known about the impact of the level of acculturation on such perceptions. To set up an individual goal of palliative care in Japanese Americans, it is imperative to conceptualize what constitutes a good death in this distinct population.

In a Japanese nationwide quantitative study by Miyashita et al., both general population and bereaved families of cancer patients were surveyed and asked about the relative importance of 57 components of good death¹¹. An explanatory factor analysis demonstrated 18 domains contributing to a good death¹¹. No clinically significant differences were found in any domain scores of a good death between the general population and bereaved family members¹¹, indicating that the former could be considered surrogate of dying cancer patients as much as the latter could be.

To better understand how acculturation to the US culture has impact on the traditional Japanese perception of “good death” among Japanese Americans, we decided to conduct a survey study among general population of Japanese Americans who live in the US, utilizing the same questionnaire as that in the previous Japanese study¹¹.

Hypotheses

1. The more the Japanese Americans acculturate, the more the factors they consider important for a good death differ from those which the Japanese consider important
2. In the Japanese American general population, the mean values of relative importance of all components belonging to each domain of the Good Death Domain are associated with the following factors; age, sex, presence of a chronic disease, bereavement experience by cancer within the past 10 years, interval from patient’s death, and the level of acculturation.

Primary Objectives:

To demonstrate whether there are any differences in the relative importance of each component of a good death (as determined by the Good Death Domains) among Japanese American general population with less acculturation, Japanese Americans general population with more acculturation (as determined by the Brief Acculturation Scale) and Japanese general population.

Secondary Objective(s):

1. To demonstrate whether there are any differences in relative importance of “pokkuri” (sudden death), “omakase” (leaving decision making to doctors) and “dying as one sleeps” among Japanese American general population with less acculturation, Japanese Americans general population with more acculturation (as determined by the Brief Acculturation Scale) and Japanese general population.
2. To demonstrate whether there are any association between the mean values of relative importance of all components belonging to each domain of the Good Death Domain and following factors; age, sex, presence of a chronic disease, bereavement experience by cancer within the past 10 years, interval from patient’s death, and the level of acculturation (as determined by the Brief Acculturation Scale).

Primary Endpoint:

Relative importance of each component of the Good Death Domain in Japanese American general population

Secondary Endpoint(s):

1. Relative importance of ‘dying as one sleeps’¹², ‘pokkuri’¹³ (sudden death), and ‘omakase’¹⁴ (leaving the decision to a medical expert) in Japanese American general population
2. Participants’ age, sex, presence of a chronic disease, bereavement experience by cancer within the past 10 years, interval from patient’s death, and the level of acculturation as determined by the Brief Acculturation Scale in Japanese American general population

Study Design: A cross-sectional anonymous questionnaire survey

Participants and Procedures

A cross-sectional anonymous questionnaire will be administered to a sample of Japanese American. The survey will be conducted in the general population in order to determine prevailing views. We will contact the following organizations to find potential participants.

-       The Japan America Society of Vermont (JASV)
-       Japanese Medical Society of America (JMSA)
-       The Japanese American Association of New York, Inc. (JAA)
-       Japanese American Social Services, Inc. (JASSI)

We will mail questionnaires (both English and Japanese versions) to potential respondents in MM/YYYY. Participants will be asked to complete either English or Japanese questionnaire. A follow-up post-card reminder and repeat survey mailing will be sent to all nonrespondents 2 weeks later. If the respondents do not want to participate in the survey, they will be asked to return the questionnaire with ‘‘no participation’’ indicated, and a reminder will not be mailed to them.

Measurements

Good Death Domain¹¹

This was generated based on the previous qualitative study with 63 participants¹² and literature review. It was tested in a nationwide quantitative study in Japan¹¹. This was transformed into the GDI, which was validated in a nationwide quantitative study in Japan⁷. We will ask participants to rate the relative importance of each component of Good Death Domain on a seven-point Likert scale (1: absolutely unnecessary, 2: unnecessary, 3: somewhat unnecessary, 4: unsure, 5: somewhat necessary, 6: necessary, and 7: absolutely necessary).

Other questions

In addition, we will ask participants to rate the relative importance of the following three components of a good death on the same seven-point Likert scale; ‘dying as one sleeps’, ‘pokkuri’, and ‘omakase’ to correlate our result to the previous study by Miyashita, et al¹¹.

Brief scale for measuring acculturation among Japanese Americans¹⁵

This scale was developed for measuring the level of acculturation among Japanese Americans¹⁵. It contains language preference, country of birth for respondent, extent of multiple generations born in US, country in which the respondent was raised, and self-identification (“Japanese American” or “Japanese”). This scale has been shown to demonstrate good reliability and validity in two different community samples of the Japanese Americans, and holds promise for explaining variation in this ethnic group¹⁵.

Number of Participants: 200 surveys will be sent

Main Criteria for Inclusion/Exclusion:

Inclusion criteria

1. Japanese Americans of equal to or more than second generation
2. 40 to 79 years old

Exclusion criteria

1. Those who return the questionnaire with ‘‘no participation’’ indicated
2. Health care professionals

Intervention and Mode of Delivery: Self-administered, anonymous questionnaire

Specific Evaluations and their timing:

We will send survey tools to potential responders, and send reminder postcards 2 weeks later.

References

1. Matsumura S, et al. Acculturation of attitudes toward end-of-life care. A cross-cultural survey of Japanese Americans and Japanese. J Gen Intern Med 2002;17:531-9.
2. Blackhall LJ, et al. Ethnicity and attitudes toward patient autonomy. JAMA 1995;274:820-5.
3. Ersek M, et al. Multicultural considerations in the use of advance directives. Oncol Nurs Forum 1998;25:1683-90.
4. Carrillo JE, et al. Cross-cultural primary care: a patient-based approach. Ann Intern Med 1999;130:829-34.
5. Bito S, et al. Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups. Bioethics 2007;21:251-62.
6. Matsui M, et al. Comparison of end-of-life preferences between Japanese elders in the United States and Japan.
7. Miyashita M, et al. Good Death Inventory: A measure for evaluating good death from the bereaved family member’s perspective. J Pain Symptom Manage 2008;35:486-98.
8. Steinhauser KE, et al. Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 2002;5:829-41.
9. Steinhauser KE, et al. Measuring quality of life at the end of life: validation of the QUAL-E. Palliat Support Care 2004;2:3-14.
10. Teno JM, et al. Validation of toolkit after-death bereaved family member interview. J Pain Symptom Manage 2001;22:752-8.
11. Miyashita M, et al. Good death in cancer care: a nationwide quantitative study. Ann Oncol 2007;18:1090-7.
12. Hirai K, et al. Good death in Japanese cancer care: a qualitative study. J Pain Symptom Manage 2006;31:140-7.
13. Long SO. Cultural scripts for a good death in Japan and the United States: similarities and differences. Soc Sci Med 2004;58:913-28.
14. Voltz R, et al. End-of-life decisions and advance directives in palliative care: a cross-cultural survey of patients and health-care professionals. J Pain Symptom Manage 1998;16:153-62.
15. Meredith LS, et al. Development of a brief scale to measure acculturation among Japanese Americans. J Community Psychology. 2000;28:103-13.