“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 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.     

Legal review: The Patient Self-Determination Act--"Miranda" rights in health care

The Patient Self-Determination Act should help patients make their own health care decisions without the intervention of the courts. Health care providers will acquire a large responsibility for helping to educate the public concerning the availability and use of advance directives. It is hoped that the additional investment providers will make in administering the provisions of the Act will bear dividends in better informed patients and in loss of time and suffering avoided when health care decisions are required for incapacitated patients.     

Advance Care Planning Meets Group Medical Visits: The Feasibility of Promoting Conversations

PURPOSE

Primary care needs new models to facilitate advance care planning conversations. These conversations focus on preferences regarding serious illness and may involve patients, decision makers, and health care providers. We describe the feasibility of the first primary care–based group visit model focused on advance care planning.

METHODS

We conducted a pilot demonstration of an advance care planning group visit in a geriatrics clinic. Patients were aged at least 65 years. Groups of patients met in 2 sessions of 2 hours each facilitated by a geriatrician and a social worker. Activities included considering personal values, discussing advance care planning, choosing surrogate decision-makers, and completing advance directives. We used the RE-AIM framework to evaluate the project.

RESULTS

Ten of 11 clinicians referred patients for participation. Of 80 patients approached, 32 participated in 5 group visit cohorts (a 40% participation rate) and 27 participated in both sessions (an 84% retention rate). Mean age was 79 years; 59% of participants were female and 72% white. Most evaluated the group visit as better than usual clinic visits for discussing advance care planning. Patients reported increases in detailed advance care planning conversations after participating (19% to 41%, P = .02). Qualitative analysis found that older adults were willing to share personal values and challenges related to advance care planning and that they initiated discussions about a broad range of relevant topics.

CONCLUSION

A group visit to facilitate discussions about advance care planning and increase patient engagement is feasible. This model warrants further evaluation for effectiveness in improving advance care planning outcomes for patients, clinicians, and the system.     

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.     

Evolución temporal en el conocimiento y el posicionamiento de los pacientes con enfermedades crónicas respecto al testamento vital

Objective

To describe patients’ degree of knowledge about their diseases and advance directives, as well as their willingness to write these documents, among patients with chronic diseases seen in the emergency department.

Methods

We performed a prospective, comparative, cross-sectional study, without intervention and with consecutive patient inclusion in two periods (2003 and 2008). Demographic and clinical data were recorded. An anonymous interview about patients’ knowledge and opinions about their illness and their awareness of advance directives was performed. Previous awareness of advance directives and the predisposition to write these documents were taken as dependent variables, and factors associated with these variables were analyzed.

Results

In both periods, 381 patients with similar characteristics were included (191 in 2003 and 190 in 2008). Patients showed greater knowledge of their disease (74% vs 55%, p < 0,001), a greater predisposition to take part in medical decisions (62% vs 42%, p < 0,001), and higher participation in such decisions (48% vs 35%, p = 0.01) in 2008 than in 2003. However, awareness of advance directives was slightly lower (18% vs 23%, p = NS), and willingness to write these documents was unchanged (50% vs 50%, p = NS). Awareness of advance directives was associated with age less than 75 years and having completed secondary school. The predisposition to write advance directives was associated with previous awareness of these documents, considering oneself to be well informed, and wanting greater participation in medical decisions.

Conclusions

Patients with chronic diseases showed greater understanding of their disease in the second period but awareness of advance directives and willingness to write these documents remained low. Information on these issues should be improved as an essential part of the physician-patient relationship.     

The PSDA and treatment refusal by a depressed older patient committed to the state mental hospital

Since 1991, the Patient Self-Determination Act (PSDA) has required all health care institutions that receive Federal funds to inform patients upon admission of their rights to make decisions about medical care and to execute advance directives. Implementation of the PSDA presents a special challenge for state mental hospitals. The relevance and possible negative therapeutic impact of discussing end of life decisions at the time of an acute psychiatric admission has recently been raised in the literature. Other ethical dilemmas arising from the interplay between mental illness and informed consent for medical treatment, particularly for older patients committed to state mental hospitals, have been highlighted by the PSDA. In this article we discuss some of the issues raised by implementation of the PSDA in this setting.     

The Patient Self-Determination Act: new responsibilities for health care providers

On December 1, 1991, most health care provider organizations became subject to the portions of The Omnibus Budget Reconciliation Act of 1990 informally known as the Patient Self-Determination Act (PSDA). This law does not create new substantive rights but instead requires providers to inform patients of their existing rights under state law to make health care decisions and to execute "advance directives," such as durable powers of attorney for health care and living wills. The PSDA could end up as just one more federal bureaucratic intrusion into health care that increases its cost while enhancing neither its effectiveness nor its humanism. A better outcome is possible only if providers treat it as an opportunity to work with their staff (including attending physicians) to enhance the quality of patient decisionmaking and planning for future illness, so that the real discussions needed to create useful advance directives can go on among patients, their family members, and the health care professionals who care for them.     

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.     

Advance directives among patients in a house call program.

BACKGROUND: Advance medical directives (the living will and the durable power of attorney) provide a means for competent persons to influence treatment decisions in the event of serious illness and loss of competence. Advance directives among elderly homebound patients. METHODS: In a house call program for 120 elderly patients, a standardized telephone interview was conducted with 116 patients or their caregivers. They were asked whether they had a will, a living will, or had assigned a durable power of attorney. Those without advance directives were asked whether they knew what each directive was. Demographic and medical data were assessed by interview and chart review. RESULTS: More than 60 percent of the patients knew about the durable power of attorney, and more than one-half had assigned a durable power of attorney. About one-third knew about living wills, but only 5 percent had one. One-third of the patients had a will. CONCLUSIONS: Advance directives are important mechanisms whereby patients can extend autonomy over the circumstances of dying. Physicians and patients should consider and discuss the issues that surround treatment in the event of terminal illness or permanent unconsciousness.     

Decisiones al final de la vida: resultados del cuestionario validado por expertos

Objective

To assess the attitudes and knowledge in the life's end about palliative care, advance directives, psychological-physical care, medically assisted suicide and spiritual accompaniment.

Structuring healthcare advance directives: Evidence from Chinese end-of-life cancer patients' treatment preferences

Background

Patients' treatment decisions may be influenced by the ways in which treatment options are presented. There is little evidence on how patients with advanced cancer choose preferences for advance directives (ADs) in China. Informed by behavioural economics, we assess whether end-of-life (EOL) cancer patients held deep-seated preferences for their health care and whether default options and order effects influenced their decision-making.

Methods

We collected data on 179 advanced cancer patients who were randomly assigned to complete one of the four types of ADs: comfort-oriented care (CC) AD (comfort default AD); a life extension (LE)-oriented care option (LE default AD); CC (standard CC AD) and LE-oriented (standard LE AD). Analysis of variance test was used.

Results

In terms of the general goal of care, 32.6% of patients in the comfort default AD group retained the comfort-oriented choice, twice as many as in the standard CC group without default options. Order effect was significant in only two individual-specific palliative care choices. Most patients (65.9%) appointed their children to make EOL care decisions, but patients choosing the CC goal were twice as likely to ask their family members to adhere to their choices than patients who chose the LE goal.

Conclusion

Patients with advanced cancer did not hold deep-seated preferences for EOL care. Default options shaped decisions between CC and LE-oriented care. Order effect only shaped decisions in some specific treatment targets. The structure of ADs matters and influence different treatment outcomes, including the role of palliative care.

Patient or Public Contribution

Between August and November 2018, from 640 cancer hospital medical records fitting the selection criteria at a 3A level hospital in Shandong Province, we randomly selected 188 terminal EOL advanced cancer patients using a random generator programme to ensure all eligible patients had an equal chance of selection. Each respondent completes one of the four AD surveys. While respondents might require support in making their healthcare choices, they were informed about the purpose of our research study, and that their survey choices would not affect their actual treatment plan. Patients who did not agree to participate were not surveyed.     

Religious advance directives: the convergence of law, religion, medicine, and public health.

Because of the deep interpersonal significance of decisions made at the end of life, it is not surprising that religion has played an important role in patient and family decision making. Specific religious concerns about death and dying have led to religious advance directives. Advance directives offer a case study of models of interaction between religious communities and secular institutions. This paper examines why such directives have been created and how they may affect health care decisions. An analysis of their strengths and weaknesses concludes that specific religious instructions are unnecessary in written directives and may undermine both the religious and health care goals of patients.     

Urban/Rural Differences in Decision Making and the Use of Advance Directives Among Nursing Home Residents at Admission

CONTEXT: Advance directives promote patient autonomy and encourage greater awareness of final care options while reducing physician and family uncertainty regarding patient preferences. PURPOSE: To investigate differences in decision making authority and the use of advance directives among nursing home residents admitted from urban and rural areas. METHODS: A total of 551,208 admission assessments in the Minimum Data Set were analyzed for all residents admitted to a nursing facility in 2001. Using the Rural Urban Commuting Areas (RUCA) methodology and ZIP code of primary residence before admission, these residents were classified into 4 urban/rural areas. FINDINGS: Residents from rural areas were significantly more likely to have executed a durable power of attorney for health care or for financial decisions than residents admitted from the other areas, with the largest differences observed between residents admitted from urban and rural areas. Almost 6 residents in 10 from urban areas had no advance directives in place at admission compared with only 4 residents in 10 admitted from rural areas. CONCLUSIONS: Health providers and social workers in both rural and urban areas should advise patients about the value of advance directives.     

Partnerships with patients: the pros and cons of shared clinical decision-making

The traditional style of medical decision-making in which doctors take sole responsibility for treatment decisions is being challenged. Attempts are being made to promote shared decision-making in which patients are given the opportunity to express their values and preferences and to participate in decisions about their care. Critics of shared decision-making argue that most patients do not want to participate in decisions; that revealing the uncertainties inherent in medical care could be harmful; that it is not feasible to provide information about the potential risks and benefits of all treatment options; and that increasing patient involvement in decision-making will lead to greater demand for unnecessary, costly or harmful procedures which could undermine the equitable allocation of health care resources. This article examines the evidence for and against these claims. There is considerable evidence that patients want more information and greater involvement, although knowledge about the circumstances in which shared decision-making should be encouraged, and the effects of doing so, is sparse. There is an urgent need for more research into patients' information needs and preferences and for the development and evaluation of decision-support mechanisms to enable patients to become informed participants in treatment decisions.     

The values history. The evaluation of the patient's values and advance directives

Autonomous decision making by patients can be enhanced by a variety of advance directives. These directives, the living will and the durable power of attorney, have an ethical and legal basis on which the patient can prospectively make decisions about life-sustaining therapies. The strength of these directives can be enhanced by the use of the Values History, serving as an adjunct to them. The Values History can also be used as a clinical tool to elicit the values of the patient as they pertain to chronic as well as critical medical care. Documentation of the patient's values will give the health care team a fuller understanding of the patient's preferences and directions.     

Advancing Value Assessment in the United States: A Multistakeholder Perspective

Rising costs without perceived proportional improvements in quality and outcomes have motivated fundamental shifts in health care delivery and payment to achieve better value. Aligned with these efforts, several value assessment frameworks have been introduced recently to help providers, patients, and payers better understand the potential value of drugs and other interventions and make informed decisions about their use. Given their early stage of development, it is imperative to evaluate these efforts on an ongoing basis to identify how best to support and improve them moving forward. This article provides a multistakeholder perspective on the key limitations and opportunities posed by the current value assessment frameworks and areas of and actions for improvement. In particular, we outline 10 fundamental guiding principles and associated strategies that should be considered in subsequent iterations of the existing frameworks or by emerging initiatives in the future. Although value assessment frameworks may not be able to meet all the needs and preferences of stakeholders, we contend that there are common elements and potential next steps that can be supported to advance value assessment in the United States.     

Mental competence and surrogate decision-making towards the end of life

German legislation demands that decisions about the treatment of mentally incompetent patients require an 'informed consent'. If this was not given by the patient him-/herself before he/she became incompetent, it has to be sought by the physician from a guardian, who has to be formally legitimized before. Additionally this surrogate has to seek the permission of a Court of Guardianship (Vormundschaftsgericht), if he/she intends to consent to interventions, which pose significant risks to the health or the life of the person under his/her care. This includes 'end-of-life decisions'. Deviations from this procedure are only allowed in acute emergencies or cases of 'medical futility'. On the basis of epidemiological and demographical data it can be shown that the vast majority of surrogate decisions on incompetent patients in Germany is not covered by legally valid consent. Moreover, the data suggests that if consent were to be requested according to the legal regulations, both the legal and medical system could realistically never cope with the practical consequences of this. Additionally, empiric research has revealed serious deficits concerning medical 'end of life-decisions' and practical performance in palliative care. As a consequence a multidisciplinary discussion has developed in Germany about the reform of present legislation with respect to key-issues like the assessment of mental competence, the options for exercising patient self-determination via advance directives and durable powers of attorney, the improvement of palliative care facilities, the clarification of formal procedures for surrogate decision-making in health care and towards the end of life and the possibilities and their limitations of controlling these decision-making processes 'externally' (e.g., by Guardianship Courts or committees). The authors discuss those proposals, which clearly dominate the present debate: They all aim to comply with the scientific basis of German law, jurisdiction and the European traditions of philosophy of health care and bioethics.     

Patienten als Partner in der letzten Lebensphase

Between March 2002 and August 2003 as part of the research project "Patients as partners -- tumour patients and their participation in medical decisions" tumour patients undergoing palliative therapy (n=272) were interviewed and asked about their level of information, their desired place to die and whether they had prepared an advance directive. Furthermore, 72 relatives of deceased patients who had been looked after by the project's palliative care team were given a similar questionnaire including questions concerning their knowledge about disease and prognosis, the actual place of death and the relevance of advance directives. According to patients and relatives, information particularly about prognosis is unsatisfactory. Of the inter-viewed patients, 75% said they wanted to die at home and 15% in a hospital. According to their relatives, 36% of the patients looked after by the palliative care team had an advance directive. The survey of the relatives showed a significant relation between the preparation of an advance directive and dying at the desired place. According to the relatives, medical and health reasons, hope for an improvement up to the very end,acute worsening of the condition and deficits in medical care were important reasons for dying in hospital against the patient'swish. In future, advance directives should be used as an aid for communication and the planning of care. Therefore, cooperation between doctors and patients based on a partnership is necessary. The required competence in communication should be improved.