Acculturation and End‐of‐life Decision Making: Comparison of Japanese and Japanese‐american Focus Groups

Abstract

Variation in decision-making about end-of-life care among ethnic groups creates clinical conflicts. In order to understand changes in preferences for end-of-life care among Japanese who immigrate to the United States, we conducted 18 focus groups with 122 participants: 65 English-speaking Japanese Americans, 29 Japanese-speaking Japanese Americans and 28 Japanese living in Japan. Negative feelings toward living in adverse health states and receiving life-sustaining treatment in such states permeated all three groups. Fear of being meiwaku, a physical, psychological or financial caregiving burden on loved ones, was a prominent concern. They preferred to die pokkuri (popping off) before they become end stage or physically frail. All groups preferred group-oriented decision-making with family. Although advance directives were generally accepted, Japanese participants saw written directives as intrusive whereas Japanese Americans viewed them mainly as tools to reduce conflict created by dying person's wishes and a family's kazoku no jo--responsibility to sustain the dying patient. These findings suggest that in the United States Japanese cultural values concerning end-of-life care and decision-making process are largely preserved.

Determinants of Treatment Intensity for Patients with Serious Illness: A New Conceptual Framework

“…The relationship of the primary decision maker to the patient may affect treatment intensity. The family's treatment preferences may also be influenced by culture or filial responsibilities, 69,76,77 as well as their own assessment of the patient's quality of life or likelihood to benefit from treatment. Lastly, just as the patients' characteristics may affect their preferences, the surrogates' characteristics and experiences may also influence preferences.…”

Advance Care Planning: Preliminary Report of Differences and Similarities between Korean and Korean American

“…The United Sates is a nation increasingly composed of people with diverse racial or ethnic and cultural backgrounds. Decision making for end-of-life care in a cross-cultural context can be difficult because these decisions must be understood within cultural beliefs and values (2). With increasing diversity in the United States, conflicts between patients and physicians who have different backgrounds are becoming common.…”

“…In the United States, the health care system is based on the concept of respect for autonomy and the patient's right to self-determination (1). Since many patients lose decision-making ability when they become seriously ill, advance care planning has been widely used in the United States to preserve autonomy in end-of-life decisions (2). In addition, advance care planning is promoted to ease medical care toward the end of life (3).…”

Factors influencing the attitudes and behaviors of oncologists regarding the truthful disclosure of information to patients with advanced and incurable cancer

“…Although patients vary in the degree to which they want to be medically informed and to thereby participate in the decision-making process, surveys of patient preferences indicate that the overwhelming majority of patients in Western countries [11][12][13][14][15][16][17][18][19], and substantial proportion of patients in nonWestern countries [13,[20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37][38], want disclosure of information to participate in the decision-making process. Universally, recent survey data of patient preferences demonstrate substantial heterogeneity of preferences that are not individually predictable by geography, culture, age, race, sex or educational level [11][12][13][14][15][19][20][21][22][23][24][25][26][27][28][29][30]…”

“…Universally, recent survey data of patient preferences demonstrate substantial heterogeneity of preferences that are not individually predictable by geography, culture, age, race, sex or educational level [11][12][13][14][15][19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35][36][37]39]. Furthermore, studies that have evaluated the concordance between patient preferences on one hand and family member perception of patient preferences on the other hand have demonstrated that family members commonly underestimate the amount of information that patients desire about their condition and the degree to which they want to be involved in decisionmaking [32,37,[40][41][42][43][44].…”