Exploring uncertainty in advance care planning in African Americans: does low health literacy influence decision making preference at end of life

African Americans over 65 represent 3.5 of the 35.6 million Americans. Morbidity and mortality rates are highest among this group; associated with lack of resources and awareness of health problems. But health needs are the same at end of life, yet care is less than optimal. African Americans are less likely to have advance directives nonetheless desire communication, information, respect, and a trusting doctor-patient relationship. Low health literacy may contribute to this disparity. This scholarly review examines the health literacy in advance care planning and refines concepts of uncertainty in illness theory deriving a model for advance care planning in African Americans.     

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.     

"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.     

“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.     

Advance directives: from the perspective of the patient and the physician.

American physicians and patients share some common ground in their perspectives on advance directives. The majority in both groups strongly endorse the use of these documents. Both groups believe it is the physician's responsibility to initiate the discussion about advance directives. However, a gap between the two perspectives can be defined. In end-of-life decision making, physicians balance the ethical principle of patient autonomy with other principles such as appropriate withholding of care in the setting of futility. Patients' preferences for end-of-life care are most influenced by expected outcomes. Physicians tend to be selective in their indications for initiating a discussion about advance directives, according to clinical factors. In contrast, most patients want to discuss advance directives with their physician under all circumstances.     

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.     

Advance directives: limitations to completion

The number of elderly persons is expected to increase to 55 million by 2020, with the minority population increasing to 12.9 million, yet fewer than 30% of Americans have advance directives in place. Cultural values, religious beliefs, and family support systems are a few of the factors that influence or hinder the completion of advance directives. Health care provider perspectives regarding advance directives vary greatly with health care settings. Many primary care providers are reluctant to initiate conversations regarding advance directives for multiple reasons. Nurse practitioners cover more than 600 million office visits per year in the United States and are in a key position to educate, advocate, and assist in the completion of advance directives.     

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.     

The state of advance care planning: one decade after SUPPORT

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) was a landmark study regarding end-of-life decision making and advance care planning. Phase I of the study looked at the state of end of life in various hospitals, and phase II implemented a nurse-facilitated intervention designed to improve advance care planning, patient-physician communication, and the dying process. The observational phase found poor quality of care at the end of life and the intervention failed to improve the targeted outcomes. The negative findings brought public attention to the need to improve care for the dying and spawned a wealth of additional research on decision-making at the end of life. In the decade since SUPPORT, researchers have defined the attributes of a "good death," addressed the role of advance directives in advance care planning, and studied the use of surrogate decision-making at the end of life. This rekindled the discussion on advance care planning and challenged health care providers to design more flexible approaches to end of life care.     

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.     

Advance directive communication: nurses' and social workers' perceptions of roles

As a facet of advance care planning for future health care, advance directive communication represents an important aspect of professional health care practice with older patients. Nurses and social workers routinely discuss advance directives in acute care settings; however, communication practices by discipline are not well understood. This qualitative study explored differences in advance directive communication practices by comparing and contrasting nurses' and social workers' perceptions of their roles. Focus group interviews were conducted with nurses (n = 6) and social workers (n = 5). Five key themes emerged from the data. Findings suggest that both professions perceive primary educational roles, though their informational practices differed in content. The professionals reported differential pathways that led to their practices with patients. Both disciplines identified advocacy roles with families and providers. The practitioners reported distinct roles with families. There was mutual recognition of interdisciplinary roles. The findings suggest that nurses and social workers engage in both parallel and complementary advance care planning practices with their patients.     

End-of-life care for gay,lesbian, bisexual and transgender people

There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care.     

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.     

End-of-life care for gay, lesbian, bisexual and transgender people

There is little understanding in Australia of the special issues faced by gay, lesbian, bisexual and transgender people in end-of-life care and advance care planning. This exploratory study aimed to achieve an initial understanding of these issues to inform the development of a larger study involving gay, lesbian, bisexual and transgender service users. Consultations were carried out with 19 service providers and 6 gay, lesbian, bisexual and transgender community members in the Northern Rivers and metropolitan Sydney areas of New South Wales, Australia. Participants reported barriers to health care service access due to discrimination, inappropriate care and lack of knowledge among both consumers and health care workers of legal rights at the end of life. While advance care planning can assist with improving end-of-life care, respondents reported a number of obstacles. These included a lack of knowledge and absence of perceived need and the additional obstacle of social isolation, leading to difficulties identifying alternative decision-makers. The study highlighted the need for education for gay, lesbian, bisexual and transgender people and health and aged care providers on existing legal provisions to prevent discrimination in end-of-life care.     

Collaboration Toward Service Excellence: A Union-Management and Empowered Employee Partnership

End-of-life care and its planning by individuals, in concert with their families and professional healthcare givers, pose important social, legal, and ethical issues. The authors evaluate the results of a multi-year (1997-2001) collaborative effort among representatives of Georgia healthcare providers, healthcare payers, and the general public that was designed to (a) improve end-of-life care through a community-focused field effort to increase public awareness, execution, and institutional management of advance directives and (b) impact institutional and state government systems and policies around end-of-life care. The authors conclude that a proactive presence of senior management is integral in implementing systematic change in hospital-based end-of-life care and offer practical recommendations to hospital leaders to affect real change in their institutions.     

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.     

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.     

Development of an interactive computer program for advance care planning

Objective  To describe the development of an innovative, multi-media decision aid for advance care planning.
Background  Advance care planning is an important way for people to articulate their wishes for medical care when they are not able to speak for themselves. Living wills and other types of advance directives are the most commonly used tools for advance care planning, but have been criticized for being vague, difficult to interpret, and inconsistent with individuals' core beliefs and values.
Results  We developed a multimedia, computer-based decision aid for advance care planning ( 'Making Your Wishes Known: Planning Your Medical Future' ) to overcome many of the limitations of standard advance directive forms. This computer program guides individuals through the process of advance care planning, and unlike standard advance directives, provides tailored education, values clarification exercises, and a decision-making tool that translates an individual's values and preferences into a specific medical plan that can be implemented by a health-care team. Pilot testing with 50 adult volunteers recruited from an outpatient primary care clinic showed high levels of satisfaction with the program. Further pilot testing with 34 cancer patients indicated that the program was perceived to be highly accurate at representing patients' wishes.
Conclusions  This paper describes the development of an innovative decision aid for advance care planning that was designed to overcome common problems with standard advance directives. Preliminary testing suggests that it is acceptable to users and is accurate.