Understanding and supporting African Americans' perspectives of end-of-life care planning and decision making

Ethnicity has been found to explain some differences across ethnic groups regarding end-of-life care choices. African Americans appear to be less likely to know about advance directives and to complete them. Five community-based focus groups, consisting of 27 African Americans, were convened to explore their perspectives of end-of-life care planning and decision making. Content analysis revealed six themes: death is not an option, religiosity and end-of-life care planning is a paradox, the health care system is a microcosm of societal and historical events, a "trusted" family member or friend is the contract for life-and-death options, ethnically relevant initiatives are essential to increase advance directives participation, and people are people. These themes serve to guide health care professionals in minimizing actions that increase African Americans' mistrust of the health care system not only in end-of-life situations but also in all of health care-related interactions.     

Chinese seniors' perspectives on end-of-life decisions.

Making end-of-life decisions is a painful and difficult process; one that can be intensified by cultural differences between physicians and their patients. The objective of this study was to examine attitudes of Chinese seniors towards end-of-life decisions. We conducted a qualitative survey in a Chinese community centre in Toronto, Canada. Face-to-face interviews, in Cantonese, were conducted with 40 Chinese seniors 65 years of age or older. Respondents based their end-of-life decision making on the following factors: hope, suffering and burden, the future, emotional harmony, the life cycle, respect for doctors, and the family. Respondents rejected advance directives. Respondents' attitudes toward end-of-life decision making can be understood through the lens of values from Confucianist, Buddhist and Taoist traditions. Health care workers can best achieve quality end-of-life care--and address the cultural differences that may arise--by focusing primarily on understanding the perspectives of patients and their families, and by continually striving for balanced and open communication at all stages of the caregiving process.     

Translating psychosocial insight into ethical discussions supportive of families in end-of-life decision-making

A large number of Americans would rather rely on family and friends more than their physicians about end-of-life care and decisions. Moving beyond traditional clinical ethics and its dyadic focus on the physician-patient relationship, this article presents an approach to ethical decision-making at the end of life that is more inclusive of the patient's family and has the potential to advance social work practice in end-of-life care. Initial attention is given to how psychosocial and bioethical perspectives and practices interact to shape understanding of moral issues in end-of-life decisions. Morally relevant principles are then adapted from contextual therapy as being useful for including more of a family focus and viewing ethical decision-making at the end of life as a family process. Specifically, focus is on exploring the ethical dynamics of family systems that impact the decision-making process and translating psychosocial insight into ethical discussions that are supportive of families. The case of a patient with sudden and unexpected brain death and without advance directives demonstrates one family's unresolved grief and illustrates how its members were helped to reason morally about end-of-life choices. Contributions of a social worker and bioethicist are illustrated.     

“It’s Like Playing With Your Destiny”: Bosnian Immigrants’ Views of Advance Directives and End-of-Life Decision-Making

Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician–patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents’ personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.     

End-of-life decisions: family views on advance directives

A cross-sectional survey was administered to family members of patients who died at 1 of the 5 Catholic institutions comprising Mercy Health Partners, a health care system in Ohio, to determine their opinions about patient and family participation in decisions about end-of-life care. Among 165 respondents, 118 (86%) of 138 agreed that the family was encouraged to join in decisions and 133 (91%) of 146 that their family member's health care choices were followed. Most agreed that nurses answered their questions (93%, 141/151) and that the doctor communicated well with family members (83%, 128/155). Seventy percent (107/152) indicated that their family member had at least 1 advance directive. There were no differences in whether health care choices were followed when patients with formal advance directives (92%, 92/100) were compared with patients without formal advance directives (88%, 35/40). A unique survey instrument can be used to measure family perceptions and opinions of participation in decisions about end-of-life care.     

Efficacy of Advance Care Planning: A Systematic Review and Meta-Analysis

ObjectiveTo systematically review the efficacy of advance care planning (ACP) interventions in different adult patient populations.DesignSystematic review and meta-analyses.Data SourcesMedline/PubMed, Cochrane Central Register of Controlled Trials (1966 to September 2013), and reference lists.Study SelectionRandomized controlled trials that describe original data on the efficacy of ACP interventions in adult populations and were written in English.Data Extraction and SynthesisFifty-five studies were identified. Study details were recorded using a predefined data abstraction form. Methodological quality was assessed using the PEDro scale by 2 independent reviewers. Meta-analytic techniques were conducted using a random effects model. Analyses were stratified for type of intervention: ‘advance directives’ and ‘communication.’Main Outcomes and MeasuresPrimary outcome measures were completion of advance directives and occurrence of end-of-life discussions. Secondary outcomes were concordance between preferences for care and delivered care, knowledge of ACP, end-of-life care preferences, quality of communication, satisfaction with healthcare, decisional conflict, use of healthcare services, and symptoms.ResultsInterventions focusing on advance directives as well as interventions that also included communication about end-of-life care increased the completion of advance directives and the occurrence of end-of-life care discussions between patients and healthcare professionals. In addition, interventions that also included communication about ACP, improved concordance between preferences for care and delivered care and may improve other outcomes, such as quality of communication.ConclusionsACP interventions increase the completion of advance directives, occurrence of discussions about ACP, concordance between preferences for care and delivered care, and are likely to improve other outcomes for patients and their loved ones in different adult populations. Future studies are necessary to reveal the effective elements of ACP and should focus on the best way to implement structured ACP in standard care.     

"It's like playing with your destiny": Bosnian immigrants' views of advance directives and end-of-life decision-making

Patient autonomy is a primary value in US health care. It is assumed that patients want to be fully and directly informed about serious health conditions and want to engage in advance planning about medical care at the end-of-life. Written advance directives and proxy decision-makers are vehicles to promote autonomy when patients are no longer able to represent their wishes. Cross-cultural studies have raised questions about the universal acceptance of these health care values among all ethnicities. In the current investigation, Bosnian immigrants were interviewed about their views of physician–patient communication, advance directives, and locus of decision-making in serious illness. Many of the respondents indicated that they did not want to be directly informed of a serious illness. There was an expressed preference for physician- or family-based health care decisions. Advance directives and formally appointed proxies were typically seen as unnecessary and inconsistent with many respondents personal values. The findings suggest that the value of individual autonomy and control over the health care decisions may not be applicable to cultures with a collectivist orientation.     

Use of advance directives for nursing home residents in the emergency department

Documented requests can ensure that patients' end-of-life care preferences are implemented, particularly in emergent circumstances. This study a) compared information on advance directives found in different sources of documentation in the hospital record of nursing home patients admitted through the emergency department and b) assessed emergency department clinicians' perceptions of how end-of-life care requests are communicated to them. Seven potential sources of documentation were reviewed in the medical records of 40 patients, and semistructured interviews were conducted with 10 emergency department clinicians. We found little concordance among sources of advance directive documentation. Our results suggest variability in documentation for nursing home patients on transfer to the emergency department, and that emergency department clinicians experience substantial difficulty in reliably obtaining information about advance directives. As treatment may vary based solely on available documentation, such information gaps may decrease the likelihood of adherence in the emergency department to patients' previously expressed care preferences.     

Opinions and use of advance directives by physicians at a tertiary care hospital

The physician-patient relationship is an essential part of end-of-life planning, including discussions of advance directives (AD). Physicians likely to encounter AD issues with their patients were identified and queried as to their knowledge, opinion, and experience with ADs. Though most physicians felt ADs were helpful to both physicians and patients, considerably less were familiar with hospital policies and the different types of ADs. Formal education in the use and function of ADs also appears to be lacking, suggesting a need to improve the way in which ADs are addressed during medical training.     

The attitudes of physicians toward the new "Dying Patient Act" enacted in Israel

This study aims to determine what clinicians know about Israel's new "Dying Patient Act" and its recommendations, to examine their attitudes and perceptions about it, and to assess their willingness to increase their involvement in advance care planning. In-depth face-to-face interviews with 10 stakeholders and specialists in the health care system, and 4 focus groups with family physicians and geriatricians working in the hospital system and the community, were conducted. There was general agreement that most people, including those in the medical profession, have little exposure to end-of-life discussion and few write advance care planning documents. The medical establishment is aware of the issue of the dying patient but is concerned about the barriers facing it in implementing the Dying Patient Act. These barriers can be divided into three main categories: the medical system, the law itself, and the characteristics of the Israeli population. The results may help augment educational programs on related subjects and increase the use of advance care planning.     

Peer Reviewed: Discussions by Elders and Adult Children About End-of-Life Preparation and Preferences

Introduction

In the United States, 73% of deaths occur among people aged 65 years or older. Although most would prefer to die at home after a short illness, most actually die in institutions after prolonged declines. Despite this discrepancy, elders and their adult children often do not discuss end-of-life preferences. Use of advance directives has not been widespread, and people often avoid the subject until a crisis. This project focused on informal family communication about end-of-life preparation and preferences, about which little is known.

Methods

In May 2006, we conducted in-depth exploratory interviews with 15 older adults about their end-of-life preparation and preferences and with 15 younger adults about their parents'' end-of-life preparation and preferences. The interview included an item rating the depth of discussion.

Results

Participants in both groups were primarily female and white. Mean age of older adults was 78.6 years (range, 70–88 years). Mean age of younger adults was 53.1 years (range, 42–63 years); mean age of their parents was 82.6 years (range, 68–99 years). Nine older adults reported discussing end-of-life preparation and preferences with their adult children; six had barely discussed the topic at all. Ten younger adults reported having talked with their parents about end-of-life preparation and preferences; five had not discussed it. Barriers to discussions about end-of-life preparation and preferences were fear of death, trust in others to make decisions, family dynamics, and uncertainty about preferences. Facilitators for discussion were acceptance of the reality of death, prior experience with death, religion or spirituality, and a desire to help the family. Successful strategies included casually approaching the topic and writing down end-of-life preparation and preferences.

Conclusion

Knowing the obstacles to and facilitators for discussion can help health care and public health professionals target approaches to encouraging elders and their families to discuss end-of-life preparation and preferences before a crisis.     

End-of-Life Care Issues: A Personal,Economic, Public Policy,and Public Health Crisis

Advance directive documents are free, legal, and readily available, yet too few Americans have completed one. Initiating discussions about death is challenging, but progress in medical technology, which leads to increasingly complex medical care choices, makes this imperative.Advance directives help manage decision-making during medical crises and end-of-life care. They allow personalized care according to individual values and a likely reduction in end-of-life health care costs.We argue that advance directives should be part of the public health policy agenda and health reform.IS END-OF-LIFE CARE A MATTER of personal values, economics, public policy, or a looming public health crisis? Actually, it is all of these. But when we consider the population’s demographic shift to older adults, which is associated with chronic illness and multiple comorbidities, the enormous health care costs consumed in end-of-life care, and complex ethical issues, it is time for the public health community to put this issue squarely on its agenda. Increasing the rate of completion of advance directives is a key step, and specific policy strategies can be identified to accomplish this objective.Advance directives were created by federal and state law to ensure autonomy of patients who eventually become unable to make decisions for themselves.1,2 Advance directives are free, legal, and straightforward forms that can be completed in a few minutes. Typically, advance directives address several areas regarding end-of-life care when a person becomes unable to make medical decisions for himself or herself. First, a person defines the amount and kind of care he or she might receive under various medical circumstances. Second, a person designates a health care agent to make medical decisions when the person can no longer do so. Third, advance directives may also address other end-of-life care issues including organ donation, whole body donation to medical schools, funeral and burial arrangements, legacy recordings for posterity, and—in 3 states (Oregon, Washington, and Montana)—assisted dying.     

A better approach to care of the dying. Catholic healthcare and the Catholic community can present an alternative to physician-assisted suicide

To combat physician-assisted suicide, Catholic healthcare and the Catholic community cannot solely focus on mounting campaigns and formulating policies. They must also demonstrate an alternative way to approach death and care of the dying, taking a leadership role in improving end-of-life care. To accomplish this, Catholic healthcare must foster a culture that recognizes death as the inevitable outcome of human life and makes care for the dying as important as care for those who may get well. The ministry must acknowledge the limits of human life, human abilities, human ingenuity, and medical technology; and respect decisions to forgo life-sustaining therapies. In addition, physicians must address advance directives with patients before hospitalization and must be willing to offer hospice care as an option to dying patients and their families. More effective pain management must be devised. Catholic facilities must develop palliative care policies and commit to ongoing education to provide such care. It is essential that they pay attention to the environment in which patients die; identify the physical, psychosocial, and spiritual needs of family members; and use prayer and rituals in meaningful ways. With a clear focus on improving end-of-life care, Catholic healthcare--in partnership with other denominations--can eliminate some of the factors that can make physician-assisted suicide seem appealing to suffering people.     

Advance directive communications practices:social worker's contributions to the interdisciplinary health care team

This article presents a comparative study about social workers' interdisciplinary advance directive communication practices with patients at several hospitals located in upstate New York. The sample consisted of physicians (n=32), nurses (n=74), and social workers (n=29). The research surveyed advance directive communication practices by discipline utilizing a self-administered questionnaire. Advance directive communication was operationalized as a cumulative process incorporating the following phases that were measured as scales: initiation of the topic, disclosure of information, identification of a surrogate decision-maker, discussion of treatment options, elicitation of patient values, interaction with family members, and collaboration with other health care professionals. Results suggest that social workers offer distinct skills in their advance directive communication practices and discuss advance directives more frequently than either physicians or nurses.     

After the Cruzan case: the primary care physician and the use of advance directives.

In the case of Nancy Cruzan, involving an incompetent patient's right to have artificial feeding withdrawn, the Supreme Court of the United States upheld the State of Missouri's right to set evidenciary standards prior to the discontinuation of care. The "clear and convincing" standard of the Cruzan ruling highlights the primary care physician's importance in proactively addressing advance directives with patients in the outpatient setting. Primary care physicians need to familiarize themselves with and discuss with patients such advance directives as the living will and the durable power of attorney. Physicians also need to understand the legal requirements of advance directives, as well as the implications of the clear and convincing standard in their own state.     

Economic,political and ethnic influences on end-of-life decision-making: a decade in review

Implementation of the Patient Self Determination Act (PSDA) a decade ago has been followed by considerable research examining usage of advance directives among patient populations as well as among health care professionals. This article summarizes the history of end-of-life medical treatment options and provides a discussion of critical economic, political, and legal events that preceded passage of the PSDA. A review of the literature during the decade that followed is presented including research exploring ethnic factors in the completion of advance directives. Barriers to completing advance directives by minority populations are discussed and considerations for policy makers are provided.     

“I don’t need my patients’ opinion to withdraw treatment”: patient preferences at the end-of-life and physician attitudes towards advance directives in England and France

This paper presents the results of a qualitative interview study exploring English and French physicians’ moral perspectives and attitudes towards end-of-life decisions when patients lack capacity to make decisions for themselves. The paper aims to examine the importance physicians from different contexts accord to patient preferences and to explore the (potential) role of advance directives (ADs) in each context. The interviews focus on (1) problems that emerge when deciding to withdraw/-hold life-sustaining treatment from both conscious and unconscious patients; (2) decision-making procedures and the participation of proxies/relatives; (3) previous experience with ADs and views on their usefulness; and (4) perspectives on ways in which the decision-making processes in question might be improved. The analysis reveals differences in the way patient preferences are taken into consideration and shows how these differences influence the reasons physicians in each country invoke to justify their reluctance to adhering to ADs. Identifying cultural differences that complicate efforts to develop the practical implementation of ADs can help to inform national policies governing ADs and to better adapt them to practice.     

The Effect of Advance Directive Completion on Hospital Care Among Chronically Homeless Persons: a Prospective Cohort Study

Advance care planning is relevant for homeless individuals because they experience high rates of morbidity and mortality. The impact of advance directive interventions on hospital care of homeless individuals has not been studied. The objective of this study was to determine if homeless individuals who complete an advance directive through a shelter-based intervention are more likely to have information from their advance directive documented and used during subsequent hospitalizations. The advance directive included preferences for life-sustaining treatments, resuscitation, and substitute decision maker(s). A total of 205 homeless men from a homeless shelter for men in Toronto, Canada, were enrolled in the study and offered an opportunity to complete an advance directive with the guidance of a trained counselor from April to June 2013. One hundred and three participants chose to complete an advance directive, and 102 participants chose to not complete an advance directive. Participants were provided copies of their advance directives. In addition, advance directives were electronically stored, and hospitals within a 1.0-mile radius of the shelter were provided access to the database. A prospective cohort study was performed using chart reviews to ascertain the documentation, availability, and use of advance directives, end-of-life care preferences, and medical treatments during hospitalizations over a 1-year follow-up period (April 2013 to June 2014) after the shelter-based advance directive intervention. Chart reviewers were blinded as to whether participants had completed an advance directive. The primary outcome was documentation or use of an advance directive during any hospitalization. The secondary outcome was documentation of end-of-life care preferences, without reference to an advance directive, during any hospitalization. After unblinding, charts were studied to determine whether advance directives were available, hospital care was consistent with patient preferences as documented in advance directives, and hospital resource utilization during admission. During the 1-year follow-up period, 38 participants who completed an advance directive and 37 participants who did not complete an advance directive had at least one hospitalization (36.9 vs. 36.2 %, p?=?0.93). Participants who completed an advance directive were significantly more likely to have documentation or use of an advance directive in hospital, compared to participants who did not complete an advance directive (9.7 vs. 2.9 %, p?=?0.047). Without reference to an advance directive, documentation of end-of-life care preferences occurred in 30.1 vs. 30.4 % of participants, respectively (p?=?0.96), most often due to documentation of code status. There were no significant differences in resource utilization between admitted patients who completed and did not complete an advance directive. In conclusion, homeless men who complete an advance directive through a shelter-based intervention are more likely to have their detailed care preferences documented or used during subsequent hospitalizations.     

Exploratory study on end-of-life issues: barriers to palliative care and advance directives

BACKGROUND: In the United States, as in most developed countries, death is rarely unexpected. It usually occurs in older persons with chronic progressive illnesses that often are complicated by infections or exacerbations. Many patients with terminal illnesses choose palliative care to relieve symptoms, improve the quality of their lives, and strive for a peaceful death. Professionals who serve dying patients need to recognize the importance of advance directives as part of a patient's decision to forgo curative treatment for palliative care. OBJECTIVES: SOLACE (Supporters of Life-Affirming Care at End of Life) is a coalition of interdisciplinary professionals in the northern Virginia community dedicated to improving end-of-life care. The objectives of the SOLACE survey were to identify and describe: 1) professionals' perceptions about barriers related to hospice and palliative care, 2) professionals' opinions about barriers related to dying at home, 3) professionals' perceptions about barriers related to advance directives, and 4) relationships between professionals and their perceived barriers to advance directives and hospice and palliative care. METHODS: From several consultations with hospice experts, a survey questionnaire was developed to solicit responses from professionals on palliative care, dying at home, and advance directives. Measures that assessed obstacles to palliative care were modified from previous studies to yield composite barrier scores. From a sample of a variety of participants at a national conference on palliative care (n = 200), 101 subjects returned questionnaires (51 percent) yielding 100 usable completed forms from attendees who demonstrated an interest in palliative care and, in some cases, a high level of personal or professional experience. Survey results were analyzed on respondents' perceptions concerning barriers related to advance directives and the delivery of palliative care. RESULTS: Of the 13 obstacle statements, results show that respondents rated the top three barriers as 1) physician reluctance to make referrals (mean = 4.23), 2) physician lack of familiarity with availability and suitability of hospice (mean = 3.93), and 3) association of hospice with death (mean = 3.93). There was a statistically significant difference in scores for respondents from hospitals and respondents from hospices on their assessment of barriers for the association of hospice with death (t = -2.09, p < .05) and the lack of information about the severity of or irreversibility of the patients illness (t = -2.78, p < .01).