Comparison of end-of-life preferences between Japanese elders in the United States and Japan.

Significant attention is being paid to end-of-life preferences and their cultural variations. This study compares end-of-life preferences between older Japanese residing in Japan and the United States. A self-administered questionnaire was provided to elders affiliated with senior centers and clubs. Japanese Americans preferred to make decisions themselves about withholding life-sustaining treatments, whereas Japanese in Japan preferred to rely on physicians and family members. The U.S. sample showed more positive attitudes toward and higher completion rates of advance directives than the Japanese sample. Results suggest that end-of-life preferences differ between Japanese elders in the two countries and that preferences are influenced by contextual factors in one's country of residence. Practitioners need to be aware of both within-group and across-group diversity in end-of-life preferences, taking into account acculturation changes.     

End-of-life care for ethnic minority groups

Death and dying are profound events that bring into focus important ethical and medical questions for all patients, whatever their cultural background. For ethnic minority groups and their families, specific issues or barriers may arise related to culturally appropriate health care practices, cultural or religious differences, diverse health beliefs, and access to services for care and support during end-of-life conditions. National policy and local initiatives in both the United States and the United Kingdom support the development of services that address the care of ethnic minorities. This article examines end-of-life care for ethnic minority groups.     

Respecting end-of-life treatment preferences

Most patients eventually must face the process of planning for their future medical care. However, few Americans have a living will or a durable power of attorney for health care. Although advance directives provide a legal basis for physicians to carry out treatment using a health care proxy or a living will, they also should reflect the patient's values and preferences. Family physicians are in a position to integrate medical knowledge, individual values, and cultural influences into end-of-life care. Family physicians can best respect the autonomy of patients by allowing the patient and family to prospectively identify relevant health care preferences, by sustaining an ongoing discussion about end-of-life preferences, and by abiding by the decisions their patients have made.     

Adults’ perspectives on cultural,social and professional support on end-of-life preferences

BackgroundDiverse cultures and social contexts can exhibit different values, religious meaning systems, social norms concerned with social responsibility and interpersonal and family relations. These factors play an essential role in individuals’ decisions and preferences for end-of-life care.AimsTo explore Taiwanese adults’ perspectives on the influences of cultural, social and contextual factors on preferences for end-of-life care.MethodsA semi-structured face-to-face interview approach and content analysis were used. A total of 16 adults were recruited.FindingsMajor themes identified as influencing factors included social, cultural and religious aspects, professional and community resources, perceptions about end-of-life services and attitudes toward death and dying.DiscussionThis suggests that people’s end-of-life preferences can be influenced by social and cultural norms, the adequacy of systems for advance care planning, knowledge about advance directives and palliative care, and emotional reactions toward death and dying.ConclusionsFindings provided insight into adults’ perspectives on how cultural, social norms and religious values and professional support shape individuals’ beliefs and attitudes toward death and dying as well as in end-of-life decision making. These findings contribute to our understanding of adults’ end-of-life preferences and provide guidance for health professionals and communities in assisting Taiwanese people plan for the end of life.     

"Do It Your Way": a demonstration project on end-of-life care for persons with serious mental illness

Over the last decade, America's health care systems have been challenged to incorporate advance care planning and end-of-life care into their service delivery systems to assure that persons with terminal illnesses receive compassionate individualized care. Despite the surge in new research and knowledge, some groups remain understudied and underserved, such as persons with serious mental illness. "Do It Your Way," a demonstration project, was developed and implemented in a Massachusetts public mental health system to improve access to advance care planning and end-of-life care among persons with serious mental illness. This report provides an overview of the project, including its rationale, setting, needs assessment, objectives, initiatives, preliminary evaluation, impact, and conclusions.     

Dying Tax Free: The Modern Advance Directive and Patients' Financial Values

Advance directives are often used to help patients articulate their end-of-life treatment preferences and guide proxy decision makers in making health care decisions when patients cannot. This case study and commentary puts forth a situation in which a palliative care consultation team encountered a patient with an advance directive that instructed her proxy decision maker to consider estate tax implications when making end-of-life decisions. Following presentation of the case, the authors focus on two ethical issues: 1) the appropriateness of considering patients' financial goals and values in medical decision making and 2) whether certain kinds of patient values should be considered more or less relevant than others as reasons for expressed treatment preferences. Clinicians are encouraged to accept a wide range of patient values as relevant to the clinical decision-making process and to balance the influence of those values with more traditional notions of clinical harm and benefit.     

Advance directives: Portuguese palliative care professionals' views

Advance directives are a controversial subject in Portugal at present, particularly among health professionals. Although some health professionals consider them to be important tools that are helpful in making proper decisions and promoting patient autonomy, others think that they may interfere with the human and relational dimension of care. It is therefore timely to investigate health professionals' views of advance directives in more detail. This study aimed to identify and reflect on Portuguese palliative care professionals' perspectives of advanced directives and their relevance to end-of-life decision making. A qualitative exploratory methodology was adopted in which interviews were conducted with two physicians, six nurses, two psychologists, and one social worker from four palliative care teams based across Portugal. The findings emphasize the relevance of advance directives to ethical decision-making processes in palliative care. However, debates are needed regarding whether advance directives should be legally binding.     

End-of-life research as a priority for pediatric oncology.

Approximately 2,200 children and adolescents die a cancer-related death each year in the United States; of these, almost 90% will die while experiencing 2 to 8 troubling symptoms. With improved symptom control and end-of-life care, these patients might suffer less before they die and their survivors might experience fewer or less intense adverse physical and mental conditions secondary to their bereavement. The focus of this article is on five key areas related to end of life where research is critically needed; (a) the characteristics of cancer-related death and the profiles of survivorship in bereaved family members and health care providers, (b) the trajectory of dying in children and adolescents and a comparison of care delivery preferred by the family and that actually delivered, (c) end-of-life decision making, (d) the financial costs of a child or adolescent dying a cancer-related death and associated policy making, and (e) outcomes of symptom-directed or bereavement interventions. Knowing the characteristics of cancer-related deaths in children and adolescents will help researchers and clinicians develop and test effective interventions related to symptom management, decision making, and availability of care delivery models that match the dying child's needs and preferences. Such interventions could also contribute to the highest quality and cost-effective care being provided to the bereaved survivors.     

End-of-life care directives among African Americans: lessons learned--a need for community-centered discussion and education

African Americans appear to be less likely to know about advance directives and, even if known, to complete them. This small, exploratory study used a community-centered educational group discussion to assess African Americans' knowledge, attitudes, and utilization of end-of-life care directives before the occurrence of a health crisis. McNemar and paired t tests were computed to detect immediate changes in participants' initial and final perceptions about advance directives before and after the group discussion. Findings indicated further education is needed to clarify the terms used for advance directives. African Americans rely on a family-centered approach to end-of-life decision making, especially in the absence of written advance directives. They are open to community forums to discuss end-of-life care choices if presented the opportunity. Culture plays an essential role in this issue. There is a need for community health nurses to develop community-based educational programs that are not a "one-size-fits-all" approach.     

Cultural competence and health care: Japanese, Korean, and Indian patients in the United States

Cultural competence requires sensitivity to the diverse ethnic, religious, and cultural expectations of patients in our health care system. In the increasingly multicultural world of the city hospital, patients will benefit from increased cultural competency on the part of health care providers. This study interviews Japanese, Korean, and Indian immigrants to the United States, showing that these individuals hold vastly different expectations concerning: 1) when to seek medical assistance; 2) the role of the doctor in the community; 3) the role of the patient and the patient's family in conversations with the medical specialist; 4) the roles of doctors versus nurses; 5) issues of privacy and disclosure to patient and family; 6) organ donation; and 7) end-of-life care. The paper concludes with immigrants' views on what would make their medical experience in the United States more comfortable, and hence, potentially more beneficial to their mental and physical health.     

Providing Appropriate End-of-Life Care to Religious and Ethnic Minorities

There is overwhelming evidence that racial and ethnic minorities face multiple health care disparities. Recognizing and addressing cultural and religious/spiritual (RS) values is a critical aspect of providing goal-concordant care for patients facing a serious illness, especially at the end of life. Failure to address a patient's cultural and RS needs can lead to diminished quality of care and worse health outcomes. Given the multitude of cultural and RS values, we believe that a framework of cultural and RS curiosity along with a willingness to engage patients in discussions about these elements of their care within an interdisciplinary team should be the goal of all providers who are discussing goals, preferences, and values with patients facing advanced terminal illness.     

Advance directives. Why community-based older adults do not discuss their wishes

Health care providers and family members need direction when making health decisions for individuals who are unable. Advance directives allow individuals to maintain control of health care decisions. Despite that the majority of the population supports the right to express wishes related to end-of-life care, few implement advance directives. The purpose of this study was to determine reasons why community-based older adults discuss, do not discuss, or formalize advance directives. A convenience sample of 55 adults age 50 or older, participated in the study by answering a 31-question self-report questionnaire. Death or serious illness of a loved one was the most influential factor prompting formulation of an advance directive. However, the majority of the population has not expressed their health care wishes in the form of advance directives. Therefore, continuing to educate and encourage discussion of advance directives is imperative.     

Amyotrophic lateral sclerosis and life-sustaining therapy: patients' desires for information, participation in decision making, and life-sustaining therapy

To identify the wishes of patients with amyotrophic lateral sclerosis (ALS) for information, participation in decision making, and life-sustaining therapy and to determine whether these wishes are stable over time, we conducted a prospective survey (baseline and 6-month follow-up interviews) of 38 consecutive patients with an established diagnosis of ALS at the University of Chicago Motor Neuron Disease Clinic. Demographic data, clinical stage of ALS, illness experience, wishes for information, and desires for participating in decisions about life-sustaining therapy were elicited. Patients readily expressed their wishes for specific information on communication aids and ventilator care for respiratory failure. Demographic, socioeconomic, and clinical characteristics did not predict patients' desires for information and decision making. The preferences for information and participation in decisions were stable during the 6-month study period, whereas preferences for cardiopulmonary resuscitation in two hypothetical circumstances were less stable. Changes were unrelated to demographic or clinical characteristics of the patients. Because many patients with ALS change their preferences for life-sustaining therapy, advance directives for end-of-life care must be reevaluated periodically.     

Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes

Background

The older person with dementia has a limited life expectancy and the dying trajectory can be protracted and unpredictable. For good end-of-life care, early communication, exploration of residents’ wishes, and identification of someone who can represent them, are important. In care homes the timing of these discussions, and who is involved is variable. Person-centred approaches to dementia care assume that people with dementia can actively participate in decisions about their lives. Less well understood is how this can inform end-of-life care decision making and complement information provided in advance care plans completed prior to, or at the point of admission to a care home.

Objectives

To explore how older people with dementia discuss their priorities and preferences for end-of-life care.

Methods

An exploratory, qualitative study that used guided conversations with 18 people with dementia, living in six care homes. Participants were asked about their life in the care home, their health, thoughts for the future, and wishes surrounding end of life. Data were analysed thematically.

Results

People with dementia's accounts of life in the care home, what they valued, and the impact of having dementia on how they participated in decision making, provided key insights into care preferences. Three linked themes that had relevance for thinking and talking about end of life were identified: “dementia and decision making”, “everyday relationships” and “place and purpose”. Older people with dementia's accounts of everyday experiences of care, key relationships with family and care home staff members and whether they accepted the care home as their home demonstrated what was important for them now and for the future.

Conclusion

For older people living with a diagnosis of dementia, the experience of living and dying in a care home is inextricably linked. End-of-life care planning and decision making by health care professionals, care home staff and family could be enriched by exploring and documenting the preoccupations, key relationships and wishes about everyday care of people with dementia.     

Perspectives of Elderly People on Advance Directives in Japan

PURPOSE: To examine perspectives of Japanese elderly people on advance directives (ADs) and factors related to positive attitudes toward ADs. METHOD: The data were collected by a structured questionnaire from 313 of 565 older adult members of senior citizens' centers in two cities in Japan. Survey items pertained to demographic characteristics, terminal care preferences, and personal values, including autonomy, family function, and religious piety. FINDINGS: Of the 313 elderly people who completed questionnaires, 72.9% had positive preferences for executing living wills. With regard to durable power of attorney for health care, 62.2% approved of it. The supporters of ADs were more likely to have had discussions about terminal care with family members or physicians, experience of a family member hospitalized for terminal illness or injury, preferences for life-sustaining treatments that were self-determined, and personal values such as religious piety. The relationship between positive preferences toward durable power of attorney for health care and sex, marital status, and living arrangements were significant. CONCLUSIONS: Most Japanese older adults in this study approved of ADs, and family structure was important to the acceptance of designating a proxy. Discussion about end-of-life care and respect for life-sustaining treatment preferences are important decisions, about the end of life.     

SUPPORT revisited: the nurse clinician's perspective. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment

SUPPORT (the Study To Understand Prognoses and Preferences for Outcomes and Risks of Treatment) has brought to the fore the complexities-involved in end-of-life decision making. The article addresses the use of aggressive treatment in patients with poor prognoses, patient preferences, and the effects of advance directives on the care of the seriously ill patient. Discussion of end-of-life decisions is recommended among the patient, family members, and physician before the hospitalization, as is improved exposure to alternatives to aggressive treatment, such as hospice and terminal care units.     

End-of-life care in the intensive care unit: a challenge for nurses.

Results from several research studies combined with increasing public tensions surrounding physician-assisted suicide have fueled a growing awareness of the inadequacies of end-of-life care. Investigators also suggest that intensive care unit nurses have a limited role in end-of-life decision making and care planning. This article explores cultural issues influencing end-of-life care in intensive care units, explores factors surrounding the limited involvement of critical care nurses in end-of-life decision making and care planning, and offers recommendations for changing nursing practice. Because improving end-of-life care will require cultural changes, an understanding of the cultural issues involved is needed. Recommendations for changing nursing practice include a model of end-of-life care that incorporates the goals of both cure and comfort care, as well as a shared decision-making process. Nurses are essential to improving end-of-life care in today's intensive care units.     

The process of decision making about care practices for children by caregivers who are Taiwanese temporary residents in the United States

People from diverse ethnic groups carry different cultural beliefs, values, and practices. The purpose of this study was to describe the process of decision making about care practices for children by caregivers who are Taiwanese temporary residents in the United States. Twenty-one caregivers were enrolled in this study. The grounded theory method was applied during data collection and analysis. This research revealed that physical context and environmental context influence the process of decision making. Five main phases of the decision-making process were found and described in this study.