Against autonomy: How proposed solutions to the problems of living wills forgot its underlying principle.

Significant criticisms have been raised regarding the ethical and psychological basis of living wills. Various solutions to address these criticisms have been advanced, such as the use of surrogate decision makers alone or data science-driven algorithms. These proposals share a fundamental weakness: they focus on resolving the problems of living wills, and, in the process, lose sight of the underlying ethical principle of advance care planning, autonomy. By suggesting that the same sweeping solutions, without opportunities for choice, be applied to all, individual patients are treated as population-level groups-as a theoretical patient who represents a population, not the specific patient crafting his or her individualized future care plans. Instead, advance care planning can be improved through a multimodal approach that both mitigates cognitive biases and allows for customization of the decision-making process by allowing for the incorporation of a variety of methods of advance care planning.

End-of-Life Care Planning: The Importance of Older Adults' Marital Status and Gender.

Background: As the U.S. population ages, dramatic shifts are occurring in the proportion of older adults who are divorced and widowed. Health status and behaviors are known to differ across marital status groups, yet research on end-of-life (EOL) care planning has only compared married and unmarried persons, overlooking differences between divorced and widowed individuals, by gender. Objective: This study aimed to examine marital status differences in EOL care planning by comparing the likelihood of discussions about EOL care, designation of medical durable power of attorney (MDPOA) for health care decisions, and completion of a living will for married, divorced, and widowed older adults, by gender. Methods: Analyses used data from the U.S. Health and Retirement Study for 2243 adults (50 years of age and older), who died during the course of the study. Post-death, proxy respondents reported on the decedents' EOL care discussions, living will completion, and establishment of an MDPOA. Multivariate regressions were estimated to test differences in care planning across marital status groups, for men and women. Results: Divorced men were less likely than married men to have had care discussions and to have engaged in any of the three planning behaviors. Widowers were more likely to have established an MDPOA. Both divorced and widowed women were more likely to have performed any of these EOL planning activities than married women. Conclusions: Divorced men and married women are at risk for lacking EOL care planning. Practitioners are encouraged to discuss the importance of such planning as they encounter these at-risk groups.

Psychiatrists' views on different types of advance statements in mental health care in Germany.

BACKGROUND: Advance directives enable patients to ensure that treatment decisions will be based on their autonomous will, even if they are incompetent at the time at which the treatment decision is taken. Although psychiatric advance directives are legally binding in Germany and their benefits are widely acknowledged, they are still infrequently used in German psychiatric practice. AIMS: The aim of this study is to assess psychiatrists' attitudes toward the use of advance statements in mental health care. METHODS: A postal survey of psychiatrists in Germany was carried out to examine their views on advance statements in psychiatry. The survey addressed psychiatrists' experiences of and attitudes toward different types of advance statements, including psychiatric advance statements written by patients without any specific assistance, and joint crisis plans ( 'Behandlungsvereinbarungen'), where involvement of the clinical team is required. A total of 396 responded. RESULTS: Results suggest that generally speaking, respondents held favorable views on joint crisis plans for mental health care. In all, 80.7% of participants agreed that more frequent use of joint crisis plans in clinical practice would be desirable. However, clinicians' attitudes differ largely depending on the type of advance statement. Implications for the use of advance statements in psychiatry are discussed. CONCLUSION: The findings suggest that increasing the support structures available to train physicians and inform patients could lead to increased adoption of advance statements.

Health-Care Provider Personal Religious Preferences and Their Perspectives on Advance Care Planning With Patients.

OBJECTIVE:: To understand how health-care providers' (HCPs) religious preferences influence their willingness to undertake advance care planning (ACP) with patients and their acceptance of other HCP's involvement. METHODS:: Online anonymous survey distributed to HCPs in hospital, ambulatory offices, and hospice settings in Dayton, Ohio. We evaluated the associations of HCP religion with their personal ACP, willingness to facilitate ACP, and acceptance of other HCPs' ACP participation. RESULTS:: 704 respondents: nurses (66.2%), physicians (18.8%), other HCPs (15.0%), white (88.9%), and primarily Catholic (23.3%) or Protestant (32.0%). "No religion" was marked by 13.9%. Respondents were favorable to ACP with patients. Religious respondents were more likely to have a living will ( P = .035) and health-care power of attorney ( P = .007) and more accepting of clergy as ACP decision coaches ( P = .030). HCP's religion was not associated with willingness to facilitate ACP discussions. There were minor differences between Catholics and Protestants. CONCLUSIONS:: Personal religious preference is associated with HCP's own ACP but had little relationship with their willingness to facilitate ACP conversations with patients or acceptance of other professional types of HCPs involvement in ACP conversations. Regardless of religious affiliation, HCPs have interest in undertaking ACP and endorse other HCPs ACP involvement. As results of this study suggest that personal religious affiliation is not a barrier for HCPs engaging in ACP with patients, attempts to overcome barriers to increasing ACP should be directed to other factors.

Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?

BACKGROUND: Advance care planning (ACP) involves several behaviors that individuals undertake to prepare for future medical care should they lose decision-making capacity. The goal of this study was to assess whether playing a conversation game could motivate participants to engage in ACP. METHODS: Sixty-eight English-speaking, adult volunteers (n = 17 games) from communities around Hershey, Pennsylvania, and Lexington, Kentucky, played a conversation card game about end-of-life issues. Readiness to engage in 4 ACP behaviors was measured by a validated questionnaire (based on the transtheoretical model) immediately before and 3 months postgame and a semistructured phone interview. These behaviors were (1) completing a living will; (2) completing a health-care proxy; (3) discussing end-of-life wishes with loved ones; and (4) discussing quality versus quantity of life with loved ones. RESULTS: Participants' (n = 68) mean age was 51.3 years (standard deviation = 0.7, range: 22-88); 94% of the participants were caucasian and 67% were female. Seventy-eight percent of the participants engaged in ACP behaviors within 3 months of playing the game (eg, updating documents, discussing end-of-life issues). Furthermore, 73% of the participants progressed in stage of change (ie, readiness) to perform at least 1 of the 4 behaviors. Scores on measures of decisional balance and processes of change increased significantly by 3 months postintervention. CONCLUSION: This pilot study found that individuals who played a conversation game had high rates of performing ACP behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.

[Each person has to make their own individual decision - arguments for physician assisted suicide]. / Jeder Mensch muss eine individuelle Entscheidung treffen dürfen.

Since November 2015, businesslike assisted suicide is punishable in Germany. But who acts businesslike? The majority of the German population prefers to make own decisions about the circumstances of their arriving death, and many of them would also accept (physician) assisted suicide if necessary. Only a minority of physicians plead for prohibiting assisted suicide in general. In the end everyone should be able to take position on his own. No one is obliged to use or execute assisted suicide.

O Testamento Vital e a Relação Médico-Paciente na perspectiva da Autonomia Privada e da Dignidade da Pessoa Humana / Living Will and Doctor-Patient Relationship from the perspective of Autonomy and Human Dignity

Este trabalho realizou reflexões jurídicas acerca das disposições de vontade do paciente, testamento vital, regulamentado pelo Conselho Federal de Medicina. O objetivo primordial foi demonstrar, sob uma perspectiva jurídica, que o instrumento se coaduna com o ordenamento jurídico brasileiro. Para essa reflexão, foram utilizadas literaturas em ética e bioética sobre o assunto e disposições concernentes ao tema. Buscou‐se estabelecer o testamento vital como garantia da prevalência da autonomia do paciente terminal como instrumento garantidor do direito de morrer com dignidade. Analisou‐se que embora ainda não esteja expressamente positivado no ordenamento jurídico brasileiro, a interpretação dos princípios da autonomia privada e da dignidade da pessoa humana, permitem a conclusão incontestável de que o negócio jurídico encontra guarida na ordem constitucional pátria. Observou‐se que para garantir a validade do testamento vital é essencial as disposições de vontade, permitindo que as relações médico‐pacientes transcorram dentro dos cuidados necessários à dignidade e autonomia no final da vida (AU)

This paper reflects on the legal provisions of the patient's will, living will, regulated by the Federal Council of Medicine. The objective was to demonstrate, in a legal perspective, that the instrument is consistent with the Brazilian legal system. For this reflection, ethics and bioethics literature concerning the issue were used. The aim was to establish the living will to guarantee the prevalence of terminal patient's autonomy as a guarantor instrument of the right to die with dignity. Subsequently, it was examined that although not expressly positive in Brazilian law, the interpretation of the principles of human autonomy and dignity, allows the undeniable conclusion that the legal business finds lodgment in the constitutional order. It was observed that to ensure the validity of living wills is essential the disposition of the will, allowing to doctor‐patient relationship to occurs inside the necessary parameters to apply dignity and autonomy at the end of life (AU)

Valoración retrospectiva de la competición para testar / No disponible

La competencia para la toma de decisiones puede verse afectada por cualquier alteración de las funciones psíquicas superiores y requiere una evaluación exhaustiva. La competencia es un concepto funcional que depende de la decisión a adoptar y del momento concreto en que se produce. La ley asigna la valoración de la capacidad para testar al Notario, pero reconoce la competencia profesional en el asesoramiento en esta área de los facultativos. La evaluación realizada por el Notario tiene especial presunción de certidumbre, sin embargo el dictamen facultativo puede actuar como elemento probatorio en un procedimiento de nulidad y resulta viable la evaluación retrospectiva post mortem basada en una adecuada documentación clínica de la patología y proceso evolutivo y una argumentación razonada

Mental Capacity can get affected by any change of mental functions and requires a thorough assessment. Mental Capacity is a functional concept that depends on the concrete decision the patient must adopt and the concrete moment when it has to be adopted. According to the law, the Notary is in charge of assessing mental capacity regarding will decisions, but it also recognizes the physicians’ expertise in advising in this area. The assessment by the Notary has special presumption of certainty, however the medical report can act as evidence in proceedings for will nullity; and post mortem retrospective assessment is considered possible if based on adequate documentation of clinical pathology and evolutionary process and on a proper rationale

Embracing a broad spirituality in end of life discussions and advance care planning.

Advance care planning for end of life typically focuses on the mechanics of completing living wills and durable power of attorney documents. Even when spiritual aspects of end of life care are discussed, the dominant assumptions are those of traditional religious systems. A broad view of spirituality is needed, one that may involve traditional religious beliefs but also includes personal understandings of what is holy or sacred. Embracing this broad practice of spirituality will help both familial and professional caregivers honor an essential aspect of end of life discussions and promote greater discernment of the deep meaning in advance care documents.

Living will interest and preferred end-of-life care and death locations among Japanese adults 50 and over: a population-based survey.

The main purpose of this study was to determine the relationships between Japanese individuals' interest in living wills and their preferred end-of-life care and death locations. Questionnaires were mailed to 1,000 individuals aged >50 to measure these 2 factors. We examined the associations between the respondents' characteristics and their preferred care and death locations by using multinomial logistic regression models. The response rate was 74%. Home was the most frequently preferred place for end-of-life care (64%), and a palliative care unit (PCU) was the most commonly preferred place to die (51%). Living will interest was associated with a preference for care (odds ratio [OR] 4.74, 95% confidence interval [CI] 1.95-12.1) and death (OR 2.75, 95% CI 1.70-4.47) in a PCU rather than a hospital, but it was not associated with the choice between receiving care or dying at home instead of a hospital. We must consider why Japanese people think home death is impracticable. The Japanese palliative care system should be expanded to meet patients' end-of-life needs, and this includes not only facilitating home care but also increasing access to PCU care.

[The living will. An analysis of state of knowledge of patients in the HELIOS hospital Leisnig]. / Die Patientenverfügung. Eine Wissensstandanalyse von Patienten im HELIOS Krankenhaus Leisnig.

On September 1, 2009, the Guardianship Law (Betreuungsgesetz) changed for the third time. Thus, the rights of the people living in Germany have been improved with reference to the preventive instruments. The aim of the work was to find about the subject to what extent patients understand the subject and how many of them have such a preventive document. The area of research has been examined on the basis of a standardized questionnaire drawn up by means of anonymous data collection in the quantitative research design. After the pretest, the survey was done in form of a documented Face-to-face-questioning in the HELIOS hospital Leisnig. The sample size comprised 139 patients from which 84 patients (37 female, 47 male) agreed with the survey. 25 percent of the questioned patients knew the law of living will (Patientenverfügungsgesetz) and 27 percent knew about the content of preventive instruments. 46.4 percent of the surveyed patients, aged between 70 and 75, had at least one preventive instrument. 63.1 percent of the patients believed that a living will has to be in a written form. 21.4 percent said that, in addition, the document has to be authenticated by a notary public. A study by van Oorschot claims that between ten and 15 percent of the people living in Germany have a living will (van Oorschot 2008, p. 443, Sahm & Schroeder 2009, p. 98). The results of this study show a much higher proportion of existing living wills. For the majority of respondents a preventive instrument plays still a minor role, but 46 percent of the population already use a preventive instrument to make provisions for themselves. 27 percent did express their will in theform of a living will. Nevertheless, the survey shows a lack of knowledge of the correct handling of the living will.

Alzheimer, dementia and the living will: a proposal.

The world population aged significantly over the twentieth century, leading to an increase in the number of individuals presenting progressive, incapacitating, incurable chronic-degenerative diseases. Advances in medicine to prolong life prompted the establishment of instruments to ensure their self-determination, namely the living will, which allows for an informed person to refuse a type of treatment considered unacceptable according to their set of values. From the knowledge on the progression of Alzheimer disease, it is possible to plan the medical care, even though there is still no treatment available. Irreversible cognitive incapacity underlines the unrelenting loss of autonomy of the demented individual. Such a loss requires the provision of specific and permanent care. Major ethical issues are at stake in the physician-patient-family relationship, even when dementia is still at an early stage. The authors suggest that for an adequate health care planning in Alzheimer disease the living will can be presented to the patient in the early days of their geriatric care, as soon as the clinical, metabolic or even genetic diagnosis is accomplished. They also suggest that the appointment of a health care proxy should be done when the person is still in full enjoyment of his cognitive ability, and that the existence and scope of advance directives should be conveyed to any patient in the early stages of the disease. It follows that ethical guidelines should exist so that neurologists as well as other physicians that deal with these patients should discuss these issues as soon as possible after a diagnosis is reached.

[Family approach--retrospective analysis of 6,617 donation requests]. / Gespräche mit Angehörigen zur Organspende. Retrospektive Analyse von 6,617 Gesprächen.

BACKGROUND: According to surveys the majority of the German population has a positive attitude towards organ donation. However, declarations of will concerning this matter are often missing in case of death. Thus, in nearly all cases consent must be obtained from the family of the deceased. Compared with refusal rates of other countries the refusal rate in Germany (approximately 40%) is rather high. The modification of the German Transplantation Legislation in November 2012 supports the voluntary documentation of everyone's decision with regard to organ donation. METHODS: Based on 6,617 documented donation requests collected between 2009 and 2011, factors were identified, which--besides personal attitude of morality--could influence the decision about donation. RESULTS: The decedent's will is often unknown (67.4%) and the family's decision is based on the suspected will of the patient. This resulted in 4097 (61.9%) consents and 2520 (38.1%) refusals. 4669 (70.6%) of these donation-requests were carried out by the physician in charge and 1948 (29.4%) with the assistance of a coordinator from the German foundation for organ transplantation (DSO). Predictive (p<0.001) for consent were the presence of a specially trained coordinator and the timing of the request for organ donation. CONCLUSION: There is a big discrepancy between the attitude displayed in surveys and the actual consent rate to organ donation. The major challenge is an improved caregiving for the donor family. Donation requests should be made preferably by trained physicians as well as coordinators. Waiting for the finalized certification of brain death may not be appropriate in all cases.

End-of-life planning in a family context: does relationship quality affect whether (and with whom) older adults plan?

OBJECTIVES: Medical professionals typically approach advance care planning (ACP) as an individual-level activity, yet family members also may play an integral role in making decisions about older adults' end-of-life care. We evaluate the effects of marital satisfaction and parent-child relationship quality on older adults' use of advance directives (i.e., living will and durable power of attorney for health care [DPAHC] appointments) and end-of-life discussions. METHODS: Using multinomial logistic regression models and data from a sample of 1,883 older adults in the Wisconsin Longitudinal Study, we estimated the effects of marital satisfaction, emotional support and criticism from children, other social support, demographic characteristics, and health on general ACP (i.e., advance directive only, discussions only, both, or neither) and specific DPAHC appointments. RESULTS: Parents with problematic parent-child relationships were less likely to complete ACP, and marital satisfaction was positively associated with completion of both advance directives and discussions. Happily married persons were more likely to appoint their spouse as DPAHC, whereas persons who received ample emotional support from children were mostly likely to appoint an adult child. DISCUSSION: Family dynamics affect ACP in complex ways and should be considered in patient-provider discussions of end-of-life care.

Ready or not: planning for health declines in couples with advanced multiple sclerosis.

This study explored how couples living with advanced multiple sclerosis approach planning for health changes together. A qualitative descriptive approach was used, with multiple in-depth interviews. Ten couples were interviewed, consisting of 10 participants with advanced multiple sclerosis and their 10 respective spouses. Interviews were transcribed verbatim and analyzed for themes related to dyad decision making. Particular focus was paid to how or if couples planned for worsening health, including advance care planning. Characteristics of couples who had made plans for worsening health included a desire to make decisions ahead of time, work in a healthcare field, and a life-threatening health event for the care-giving partner. Characteristics of couples who had not discussed plans for worsening health included diminished quality of communication between partners and hoping for a cure. Findings suggest that providers may need to assess quality of communication between partners, because strained communication may negatively affect the process of informed healthcare decision making.