OBJECTIVES: This study was designed to identify and compare the attitudes of patients and health care professionals towards advance directives. Advance directives promote recognition of the patient's autonomy, letting the individual exercise a certain measure of control over life-sustaining care and treatment in the eventuality of becoming incompetent. DESIGN: Attitudes to advance directives were evaluated using a 44-item self-reported questionnaire. It yields an overall score as well as five factor scores: autonomy, beneficence, justice, external (...) norms, and the affective dimension. SETTING: Health care institutions in the province of Québec, Canada. Survey sample: The sampling consisted of 921 subjects: 123 patients, 167 physicians, 340 nurses and 291 administrators of health care institutions. RESULTS: Although the general attitude of each population was favourable to the expression of autonomy, multivariate analysis of variance (MANOVA) indicated that physicians attached less importance to this subscale than did other populations (p < .001). Above all, they favoured legal external norms and beneficence. Physicians and administrators also attached less importance to the affective dimension than did patients and nurses. Specifically, physicians' attitudes towards advance directives were shown to be less positive than patients' attitudes. CONCLUSION: More attention should be given to the importance of adequately informing patients about advance directives because they may not represent an adequate means for patients to assert their autonomy. (shrink)

This paper joins the debate over changes in the role of health professionals when applying advance directives to manage the decision-making process at the end of life care. Issues in relation to advance directives occur in clinical units in Lithuania; however, it remains one of the few countries in the European Union where the discussion on advance directives is not included in the health-care policy-making agenda. To encourage the discussion of advance directives, (...) a study was designed to examine health professionals’ understanding and preferences related to advance directives. In addition, the study sought to explore the views of health care professionals of the application of Advance Directives in clinical practice in Lithuania. A cross-sectional survey was conducted by interviewing 478 health professionals based at major health care centers in Kaunas district, Lithuania. The design of the study included the use of a questionnaire developed for this study and validated by a pilot study. The collected data were analyzed using standard descriptive statistical methods. The analysis of knowledge about AD revealed some statistically significant differences when comparing the respondents’ profession and gender. The analysis also indicated key emerging themes among respondents including tranquility of mind, the longest possible life expectancy and freedom of choice. Further, the study findings revealed that more than half of the study participants preferred to express their will while alive by using advance directives. The study findings revealed a low level of knowledge on advance directives among health professionals. Most health professionals agreed that AD’s improved end-of-life decision making while the majority of physicians appreciated AD as the best tool for sharing responsibilities in clinical practice in Lithuania. More physicians than nurses preferred the presence of advance directives to support their decision making in end-of-life situations. (shrink)

OBJECTIVES: The subject of patient self-determination in health care has gained broad interest because of the increasing number of incompetent patients. In an attempt to solve the problems related to doctors' decision making in such circumstances, advance directives have been developed. The purpose of this study was to examine relationships between public attitudes towards patient autonomy and advance directives. SUBJECTS AND MAIN OUTCOME MEASURES: A stratified random sample of 600 adults in northern Sweden was surveyed by (...) a questionnaire with a response rate of 78.2%. The subjects were asked about their wish for control of their health care, their concerns about health care, their treatment preferences in a life-threatening situation (both reversible and irreversible), and their attitudes towards the application of advance directives. RESULTS: Numerous relationships between various aspects of self-determination in health care (desire for control, fears of over-treatment, and choice of treatment level) in general and advance directives, in particular, were found. Those who wanted to have a say in their health care (about 94%) also mainly supported the use of an advance directive. CONCLUSIONS: The fact that almost 30% of the respondents were undecided concerning their personal use of advance directives points to a lack of knowledge and to the necessity of education of the public on these issues. (shrink)

This volume gives an overview on the currently debated ethical issues regarding advance directives from an international perspective. It focuses on a wider understanding of the known and widely accepted concept of patient self-determination for future situations. Although advance directives have been widely discussed since the 1980s, the ethical bases of advance directives still remain a matter of heated debates. The book aims to contribute to these controversial debates by integrating fundamental ethical issues on advance directives (...) with practical matters of their implementation. Cultural, national and professional differences in how advance directives are understood by health care professions and by patients, as well as in laws and regulations, are pinpointed. (shrink)

Background On December 2017 the Italian Parliament approved law n. 219/2017 “Provisions for informed consent and advance directives” regarding challenging legal and bioethical issues related to healthcare decisions and end-of life choices. The law promotes the person’s autonomy as a right and provides for the centrality of the individual in every scenario of health care by mean of three tools: informed consent, shared care planning and advance directives. Few years after the approval of the law, (...) we conducted a survey among physicians working in four health care facilities specific for the care of people suffering from psychiatric disorders, cognitive disorders and dementia located in the North of Italy aiming to investigate their perceived knowledge and training need, attitudes regarding law n. 219/2017 provisions, and practices of implementation of the law. Methods A semi-structured questionnaire was developed on an online platform. The invitation to participate in the survey was sent by email to the potential participants. Information was collected by means of the online platform (Google Forms) which allows to export data in a spreadsheet (Windows Excel) to perform basic statistical analysis (frequency distributions, bar chart representation). Results Twenty-five out of sixty physicians participated in the survey. None of the respondents value their knowledge of the law as very good, 10 good, 13 neither poor nor good, 1 poor and 1 very poor. All the respondents want to learn more about the law (21 yes and 4 absolutely yes). The majority of respondents agrees with the content of the law as a whole (3 absolutely agree, 13 agree), and on each provision. The question on the clarity of the concept of capacity in the law received mixed answers and this impacted on the physicians’ opinion regarding the legitimacy in principle for our groups of patients to realize shared care planning and write advance directives. Thirteen physicians neither introduced the theme of shared care planning nor arranged for shared care planning and the main reason for this was that no patient was in a clinical situation to require it. When shared care planning is realized, a variability in terms of type and number of meetings, mode of tracking and communication is registered. Conclusions Our survey results indicate a need for more clarity regarding the interpretation and implementation of the law in the patient groups under study. There are in particular two related areas that deserve further discussion: (1) the question of whether these patient groups are in principle legitimized by the law to realize shared care planning or write advance directives; (2) the notion of capacity required by the law and how this notion can be declined in real-life situations. (shrink)

Advance directives convey consumers’ wishes about accepting or refusing future treatment if they become incompetent. They are designed to communicate a competent consumer’s perspective regarding the preferred treatment, should the consumer later become incompetent. There are associated ethical issues for health practitioners and this article considers the features that are relevant to nurses. In New Zealand, consumers have a legal right to use an advance directive that is not limited to life-prolonging care and includes general (...) health procedures. Concerns may arise regarding a consumer’s competence and the document’s validity. Nurses need to understand their legal and professional obligations to comply with an advance directive. What role does a nurse play and what questions arise for a nurse when advance directives are discussed with consumers? This article considers the cultural dimensions, legal boundaries, consumers’ and providers’ perspectives, and the medical and nursing positions in New Zealand. (shrink)

Background: In Hospital Emergency Department and Emergency Medical Services professionals experience situations in which they face difficulties or barriers to know patient’s advance directives and implement them. Objectives: To analyse the barriers, facilitators, and ethical conflicts perceived by health professionals derived from the management of advance directives in emergency services. Research design, participants, and context: This is a qualitative phenomenological study conducted with purposive sampling including a population of nursing and medical professionals linked to Hospital Emergency Department (...) and Emergency Medical Services. Three focus groups were formed, totalling 24 participants. We performed an inductive-type thematic discourse analysis. Ethical considerations: This study was approved by ethical committees of Ethical Commitee of Clínic Hospital (Barcelona) and Comittee of Emergency Medical Services (Barcelona). The participants received information about the purpose of the study. Patients’ anonymity and willingness to participate in the study were guaranteed. Findings: There were four types of barriers that hindered the proper management of patients’ advance directives in Hospital Emergency Department and Emergency Medical Services: personal and professional, family members, organisational and structural, and those derived from the health system. These barriers caused ethical conflicts and hindered professionals’ decision-making. Discussion: These results are in line with those of previous studies and indicate that factors such as gender, professional category, and years of experience, in addition to professionals’ beliefs and the opinions of colleagues and family members, can also influence the professionals’ final decisions. Conclusion: The different strategies described in this study can contribute to the development of health policies and action protocols to help reduce both the barriers that hinder the correct management and implementation of advance directives and the ethical conflicts generated. (shrink)

This study describes the results of a retrospective review of patients' charts who had an advanced directive (AD) and who were hospitalized in a tertiary, acute care teaching hospital. The purpose of the review was to understand from clinical, sociological, ethical and legal perspectives the nature and utility of ADs. Findings and implications of the review are discussed in terms of: patient demographics; diagnoses; quality of ADs; influence of ADs on clinical decisions; and legal aspects of ADs.

Bioethicists are widely agreed that patients have a right of self-determination over how they are treated. Our duty to respect this is said to be based on the principle of respect for autonomy. In end-of-life care the patient may be incompetent and unable to exercise that right. One solution is to exercise it in advance. Advance directives, which include living wills and powers of attorney for health care, enable people to decide what medical treatment they (...) will receive later, when they become incompetent. Advance directives have been criticized in two general ways. First, many critics contend that advance directives fail on a practical level to effect a patient's autonomous choices because, for example, people cannot foresee their futures well enough to make informed decisions in advance. Second, many critics contend that, practical problems aside, there is no moral authority for exercising control over one's incompetent future self. (shrink)

Theological basis -- Religion and health care -- The dignity of human life -- The integrity of the human person -- Implications for health care -- Theological principles in health care ethics -- Method -- The levels and questions of ethics -- Freedom and the moral agent -- Right and wrong -- Metaethics -- Method in Catholic bioethics -- Catholic method and birth control -- The principle of double effect -- Application -- Forgoing treatment, (...) pillar one: ordinary and extraordinary means -- Forgoing treatment, pillar two: killing and allowing to die -- Forgoing treatment, pillar three: decisions by competent patients -- Forgoing treatment, pillar three: decisions for incompetent patients -- Forgoing treatment, pillar three: advance directives -- Hydration and nutrition -- Physician-assisted suicide and euthanasia -- Medical futility -- Pain and pain management -- Ethics committees -- Embryonic stem cells and the beginning of human personhood -- Genetic engineering -- Allocating health care resources -- The use and misuse of the allocation argument. (shrink)

Advance patient directives are various forms of anticipatory medical directives made by competent individuals for the eventuality of future incompetence. They are therefore appropriate instruments for competent patients in the early stage of Alzheimer's disease to document their self-determined will in the advanced stages of dementia. Theoretical objections have been expressed against the concept of advance patient directives (problems of authenticity and identity) which, however, cannot negate the fundamental moral authority of advance patient directives. Therefore, patients, family (...) members, and physicians should make use of the appropriate form of advance directive as part of common treatment and care planning. Advance directives, when utilized intelligently, represent appropriate instruments for shared decision-making by patient, family members and physician. They should be utilized to a greater extent, particularly for the treatment planning of demented patients. (shrink)

Spain is one of the most advanced European countries in terms of the legislative and administrative development of ADs. Article 11 of Law 41/2002, concerning Patient Autonomy, regulates ‘advance directives’ and has prompted various Autonomous Regions to develop legislation in this area. Nevertheless, whilst the variety of legislations in different territories presents advantages, the disparity of criteria also presents problems.Despite significant legislative development, only 23,000 Spanish citizens have filled in an AD. Clearly, AD use is confined to a minority. (...) Several surveys, however, show that the Spanish population views these documents in a positive light. Thus, we must analyse this discrepancy between attitude and practice. A similar situation exists amongst health professionals. Whilst they generally feel that the use of ADs is positive and necessary, they are frequently unwilling to employ them.Bioethical literature and research on ADs has significantly increased in Spain over the last six years. It is likely that this trend will continue in the foreseeable future; but more resources and effort are required if ADs are to become consolidated. (shrink)

Erleichtert die Konzeptualisierung der Patientenverfügung als bloßes Indiz für den mutmaßlichen Willen die notwendige Einbeziehung eines relationalen Autonomieverständnisses in eine zunehmend kulturübergreifende Bioethik? Ich lege dar, dass die Berücksichtigung relationaler Autonomiekonzepte kein überzeugendes Argument für die Bestimmung der Patientenverfügung als bloßes Indiz für den mutmaßlichen Willen ist, sondern vielmehr – neben einer Reihe anderer Argumente – für die Patientenverfügung als verbindliche Willensbekundung spricht. Diese erweist sich als flexibel genug, um unterschiedlichen Formen von Autonomie gerecht zu werden.

This chapter contains sections titled: What Are Advance Directives and Why Do We Have Them? The Origins, and Limitations, of the “Living Will” Legislatively Authorized “Instruction Directives” Legislatively Authorized “Appointment Directives” Advance Directives Outside the United States Conceptual Problems and Practical Difficulties Barriers Remaining to the Effective Use of Advance Directives References Further reading.

State law requirements for health care advance directive documents were reviewed in every state and the District of Columbia to determine whether they are consistent and/or flexible enough to permit the utilization by the public of “universal” advance directive forms, specifically a health care power of attorney, that would be valid under every state's advance directive statutes. Such documents would have to overcome the wide variability of state legal formalities for (...) validity. If this could be accomplished, the public would benefit from having a variety of multi-state or truly universal forms available that could be used with confidence in their validity.The review found that a basic, multi-state health care power of attorney appears to be feasible in 41 States and the District of Columbia, compared to 36 states and the District in 2005. Only nine states prevent recognition of a truly universal form. Some barriers were surmountable, including differing agent and witness requirements, execution requirements, and effectiveness triggers. Other barriers were insurmountable, including mandatory forms, mandatory disclosures, and decision-specific language requirements. The strategies identified for overcoming some barriers can be used by lawyers in drafting true multi-state directives. More importantly, states should simplify state advance directive laws to facilitate a more meaningful communication model of advance care planning. (shrink)

Definition of the problemAdvance directives involve evaluative assumptions about the further course of one’s life that can be more or less appropriate and thus call for ethical reflection. This contribution focuses on the basis and criteria of such assumptions. We argue that considerations regarding the temporal structure of a good life constitute a particularly relevant perspective in this context.ArgumentsEmpirical studies on the individual composition of advance directives point to the important role of personal values and life plans that can (...) change over time. Therefore, we first contextualize advance directives from the perspective of an ethics of the good life and then discuss their implications with regard to different levels of temporality, comprising fundamental parameters of human existence in time, cultural models of the life course, as well as narratives of the individual trajectory of life.ConclusionConceptions of a good life and its temporal structure represent an important perspective for drafting and interpreting advance directives. Their consideration provides a more nuanced understanding of the evaluative implications of advance care planning. This can benefit individual patients, service providers, as well as policy makers. (shrink)

In New Zealand an advance directive can be either an oral statement or a written document. Such directives give individuals the opportunity to make choices about future medical treatment in the event they are cognitively impaired or otherwise unable to make their preferences known. All consumers of health care have the right to make an advance directive in accordance with the common law. When we consider New Zealand's rapidly ageing population, the fact that more (...) people now live with and die of chronic rather than acute conditions, the importance given to respecting autonomous decision-making, increasing numbers of individuals who require long-term residential care, and financial pressures in the allocation of medical resources, there would seem to be a number of compelling reasons to encourage individuals to write or verbalise an advance directive. Indeed the promotion of advance directives is encouraged. However, caution should be exercised in promoting advance directives to older people, especially in light of several factors: ageist attitudes and stereotypes towards them, challenges in the primary healthcare setting, and the way in which advance directives are currently focused and formulated. This paper considers some of the specific challenges that need to be addressed if the promotion of advance directives are to improve outcomes of patient treatment and care near the end of life. (shrink)

Background: The Albanian medical system and Albanian health legislation have adopted a paternalistic position with regard to individual decision making. This reflects the practices of a not-so-remote past when state-run facilities and a totalitarian philosophy of medical care were politically imposed. Because of this history, advance directives concerning treatment refusal and do-not-resuscitate decisions are still extremely uncommon in Albania. Medical teams cannot abstain from intervening even when the patient explicitly and repeatedly solicits therapeutic abstinence. The Albanian law (...) on health care has no provisions regarding limits or withdrawal of treatment. This restricts the individual's healthcare choices.DiscussionThe question of 'medically futile' interventions and pointless life-prolonging treatment has been discussed by several authors. Dutch physicians call such interventions 'medisch zinloos' (senseless), and the Netherlands, as one of the first states to legislate on end-of-life situations, actually regulates such issues through appropriate laws. In contrast, leaving an 'advance directive' is not a viable option for Albanian ailing individuals of advanced age. Verbal requests are provided during periods of mental competence, but unfortunately such instructions are rarely taken seriously, and none of them has ever been upheld in a legal or other official forum.SummaryEnd-of-life decisions, treatment refusal and do-not-resuscitate policies are hazardous options in Albania, from the legal point of view. Complying with them involves significant risk on the part of the physician. Culturally, the application of such instructions is influenced from a mixture of religious beliefs, death coping-behaviors and an immense confusion concerning the role of proxies as decision-makers. Nevertheless, Albanian tradition is familiar with the notion of 'amanet', a sort of living will that mainly deals the property and inheritance issues. Such living wills, verbally transmitted, may in certain cases include advance directives regarding end-of-life decisions of the patient including refusal or termination of futile medical treatments. Since these living wills are never formally and legally validated, their application is impossible and treatment refusal remains still non practicable. Tricks to avoid institutional treatment under desperate conditions are used, aiming to provide legal coverage for medical teams and relatives that in extreme situations comply with the advice of withholding senseless treatment. (shrink)

Persons infected with the Human Immunodeficiency Virus often experience intermittent life-threatening infections, a progressive decrease in cognitive abilities, and a loss of capacity to communicate their wishes to their family and medical care providers. Accordingly, AIDS patients are among those most likely to benefit from the increased availability of legally recognized forms of advance care planning. Although the three countries examined in this article differ greatly in the prevalence of HIV infection, the legal status of advance (...) directives, and in the attitudes toward their use, a collection of case studies is used to demonstrate that an ability to address the specific needs, values and goals of individual patients is promoted by the availability of a variety of options for implementing advance directives or health care proxies. The conclusion of the analysis is that the best option in a specific context will depend upon differences in individual values and medical objectives of the sort discussed in the case studies. Das mit der HIV-Infektion verbundene Krankheitsbild ist durch wechselnde lebensbedrohliche Infektionen und den fortschreitenden Verfall kognitiver Fähigkeiten gekennzeichnet. Es führt zudem häufig zum Verlust der Möglichkeit, Behandlungswünsche gegenüber Ärzten und Angehörigen zu äußern. Deshalb gehören besonders AIDS-Patienten zu denjenigen, die von rechtlich anerkannten vorsorglichen Patientenverfügungen profitieren werden.In diesem Artikel werden drei Länder betrachtet, die sich hinsichtlich der Häufigkeit des Auftretens der HIV-Infektion sowie des rechtlichen Status von und der Einstellung zu Patientenverfügungen erheblich unterscheiden. Fallstudien belegen allerdings, daß nicht allein die kulturellen und sozialen Bedingungen für die jeweils beste Form der Patientenverfügung ausschlaggebend sind. Voraussetzung für die Möglichkeit, den Bedingungen, Wert- und Zielvorstellungen des individuellen Patienten zu entsprechen, ist auf jeden Fall die Verfügbarkeit unterschiedlicher Formen von Patienten- und Betreuungsverfügungen. Auch innerhalb eines Kulturkreises müssen daher verschiedene Formen vorsorglicher Willensäußerungen des Patienten rechtlich anerkannt werden. Welche Art von Verfügung jeweils die beste Option darstellt, ist dabei abhängig von medizinischen Bedingungen und persönlichen Wertvorstellungen, wie sie in den Fallstudien diskutiert werden. (shrink)

The proposal of the new criteria for the diagnosis of Alzheimer’s disease based on biomarker data is making possible a diagnosis of AD at the mild cognitive impairment or predementia/prodromal– stage. Given the present lack of effective treatments for AD, the opportunity for the individuals to personally take relevant decisions and plan for their future before and if cognitive deterioration occurs is one the main advantages of an early diagnosis. Advance directives are largely seen as an effective tool for (...) planning medical care in the event the subject becomes incompetent. Nevertheless, their value has been questioned with regard to people with dementia by scholars who refer to the arguments of personal identity and of patient’s changing interests before and after the onset of dementia. In this paper, I discuss the value of advance directives in Alzheimer’s disease and other kind of dementia. Despite critics, I argue that advance directives are especially advisable in dementia and provide reasons in favor of their promotion at an early stage of the disease as a valuable tool to respect patients’ values and preferences on medical treatment, including participation in research and end of life decisions. I mainly support advance directives that include both decisions regarding health care and the appointment of an attorney in fact. I conclude that patients with AD at a prodromal or early stage should be offered the opportunity to execute an advance directive, and that not to honor a demented individual’s directive would be an unacceptable form of discrimination towards those patients. (shrink)

One of the arguments that is often advanced in defence of the public health care system in Canada appeals to the idea that medical care should not be treated as a “commodity.” The recent Romanow Report on the Future of Health Care in Canada, for instance, says that, “Canadians view medicare as a moral enterprise, not a business venture.”1 Public provision is then urged on the grounds that this is the only mode of delivery compatible (...) with this constraint. This argument has received surprisingly little scrutiny, despite the important role that it plays in structuring the recommendations of the report, not to mention the broader public debate. This is unfortunate, since not only is it, in my view, a bad argument, but it is one that actually obscures the rationale for the current public system. It encourages the widely shared misperception that health care is a pure public good in our society (financed through taxation, then provided “for free” to all citizens). Provincial governments in Canada do not, for the most part, deliver health care services directly to the population. What they provide instead is health insurance. They rely primarily upon the private sector to deliver care. Thus the Canadian health care system more closely resembles what is often described as a quasi-market, or a “public market.” The justification for the role of the public sector in health care can be traced back to market failure in the insurance sector, and not in the market for health care services. (shrink)

In this commentary on a clinical ethics case pertaining to a same-sex couple that does not have explicit surrogate decision-making or hospital-visitation rights (in the face of objections from the family-of-origin of one of the queer partners), the authors invoke contemporary legal and policy standards on LGBTQ health care in the United States and abroad. Given this historical moment in which some clinical rights are guaranteed for LGBTQ families whilst others are in transition, the authors advocate for the (...) implementation of clinical ethics mediation as the soundest and most humane form of resolution in matters where there is a dispute between family members about an incapacitated loved one. They argue that clinical ethics mediation is an ideal alternative solution because it works toward consensus about outcome, even where consensus about values is not achievable. (shrink)

A competent person can avoid the onset of dementia by refusing life‐sustaining medical care and by voluntarily stopping eating and drinking, bringing life to an end well before any health crisis. A competent person can also try to limit the duration of dementia by drafting an advance directive that sets bounds on the life‐sustaining care, including artificial nutrition and hydration, that medical caregivers can provide when the person no longer has the capacity to make her (...) own medical decisions. But between these two strategies there can lie a significant gap. A person could live with moderate to severe dementia for a considerable time, no longer able to voluntarily stop eating and drinking yet also not yet requiring the life‐sustaining care forbidden by advance directive.This gap has been much discussed in recent years in the Hastings Center Report. Several years ago (in the May‐June 2014 issue), Paul Menzel and M. Colette Chandler‐Cramer argued for what they described as a moderate correction to the dominant view that food and water should always be offered to a patient with dementia if the patient expresses a desire to eat and drink. The problem is taken up again by the legal scholar Norman L. Cantor in this issue (July‐August 2018), and Cantor, too, tries to find a moderate alternative. (shrink)

Recent legislation, such as the Patient Self-Determination Act, establishes advance directives as an acceptable procedural means of incorporating patients’ preferences for life-sustaining treatments into their medical care. Advance directives can enhance medical decision making since they provide patients with an opportunity to communicate their preferences before suffering from an acute illness that may preclude their ability to do so.Although patients expect discussions about life-sustaining therapies to be initiated by their physicians, very little is known about what prompts (...) physicians to discuss advance directives with their patients. As in other areas of clinical decision making, there is evidence that patients’ sociodemographic factors influence whether discussions about advance directives occur between patients and their physicians. In one study of persons with the acquired immunodeficiency syndrome, those who had not had discussions about advance directives with their physicians tended to be non-white, have no prior hospitalization, and were more likely to have been cared for in a health maintenance organization than in a teaching hospital. (shrink)

The substituted judgement principle is often recommended as a means of promoting the self-determination of an incompetent individual when proxy decision makers are faced with having to make decisions about health care. This article represents a critical ethical analysis of this decision-making principle and describes practical impediments that serve to undermine its fundamental purpose. These impediments predominantly stem from the informality associated with the application of the substituted judgement principle. It is recommended that the principles upon which decisions (...) are made about health care for another person should be transparent to all those involved in the process. Furthermore, the substituted judgement principle requires greater rigour in its practical application than currently tends to be the case. It may be that this principle should be subsumed as a component of advance directives in order that it fulfils its aim of serving to respect the self-determination of incompetent individuals. (shrink)

This essay reviews the Roman Catholic moral tradition surrounding treatments at the end of life together with the challenges presented to that tradition by the Texas Advance Directives Act. The impact on Catholic health care facilities and physicians, and the way in which the moral tradition should be applied under this statute, particularly with reference to the provision dealing with conflicts over end-of-life treatments, will be critically assessed. I will argue, based on the traditional treatment of end-of-life (...) issues, that Catholic physicians and institutions should appeal to the conflict resolution process of the Advance Directives Act only under a limited number of circumstances. The implications, under the Texas statute, of varied interpretations of Pope John Paul II's recent allocution on artificial feeding and hydration in the persistent vegetative state will also be considered. (shrink)

State governments provide preprinted advance directive forms to the general public. However, many adults in the United States (US) lack the skills necessary to read and comprehend health care-related materials. In this study, we sought to determine the readability of state government-sponsored advance directive forms.

In Western societies advance directives are widely recognised as important means to extend patient self-determination under circumstances of incapacity. Following other countries, England and France have adopted legislation aiming to clarify the legal status of advance directives. In this paper, I will explore similarities and differences in both sets of legislation, the arguments employed in the respective debates and the socio-political structures on which these differences are based. The comparison highlights how different legislations express different concepts emphasising different (...) values accorded to the duty to respect autonomy and to protect life, and how these differences are informed by different socio-political contexts. Furthermore each country associates different ethical concerns with ADs which raise doubts about whether these directives are a theoretical idea which is hardly applicable in practice. (shrink)

Advance directives are propagated as instruments to maintain patients’ autonomy in case they can no longer decide for themselves. It has been never been examined whether patients’ and healthy persons themselves are inclined to adhere to these documents. Patients’ and healthy persons’ views on whether instructions laid down in advance directives should be followed because that is (or is not) “the right thing to do”, not because one is legally obliged to do so, were studied and compared with (...) that of medical staff. Method: Vignette study presenting five cases. Cancer patients, healthy persons, nursing staff and physicians (n = 100 in each group) were interviewed. An adherence score was calculated (maximum value 5). The adherence score is found to be low in all groups, yet lowest in patients (1.55; standard deviation 1.13) and healthy controls (1.60; 1.37). The scores are significantly different between nursing staff on the one hand and patients and healthy controls on the other (p < 0.005 and p < 0.05, respectively), and between doctors and patients (p < 0.05). Interviewees who want these documents to be followed tend to live alone and to have already written an advance directive. Conclusions: Cancer patients and healthy persons widely disregard instructions laid down in advance directives and consider them less binding than physicians and nursing staff do. Only a minority tends to adhere more to advance directives. To improve decision-making at the end of life when patients are no longer able to decide for themselves alternative concepts, such as advanced care planning, should be considered. (shrink)

Over the last decade, several European countries and the Council of Europe itself have strongly supported the use of advance directives as a means of protecting patients’ autonomy, and adopted specific norms to regulate this matter. However, it remains unclear under which conditions those regulations should apply to people who are placed in correctional settings. The issue is becoming more significant due to the increasing numbers of inmates of old age or at risk of suffering from mental disorders, all (...) of whom might benefit from using advance directives. At the same time, the closed nature of prisons and the disparate power relationships that characterise them mean that great caution must be exercised to prevent care being withdrawn or withheld from inmates who actually want to receive it. This paper explores the issue of prisoners’ advance directives in the European context, starting with the position enshrined in international and European law that prisoners retain all their human rights, except the right to liberty, and are therefore entitled to self-determination regarding health care decisions. (shrink)

Machine generated contents note: Introduction Chapter 1: The basics of ethical decision-making Chapter 2: Hospital ethics committees and clinical ethicists Chapter 3: The settings of health care ethical dilemmas Chapter 4: Advance directives Chapter 5: Do Not Resuscitate orders and "Code Blue" Chapter 6: Non-beneficial medical interventions Chapter 7: Quality of life and treatment burdens Chapter 8: Patient privacy and confidentiality Chapter 9: Refusing medical treatment Chapter 10: Health care at the end of life Chapter (...) 11: Transplant ethics Chapter 12: Neuroethics Chapter 13: Ethics and reproductive technology Chapter 14: Genetics and ethics Chapter 15: Pediatric ethics Chapter 16: Participating in a research study Appendix A: Resource List Appendix B: Glossary Index. (shrink)

Background In Japan, discussion concerning advance directives (ADs) has been on the rise during the past decade. ADs are one method proposed to facilitate the process of communication among patients, families and health care providers regarding the plan of care of a patient who is no longer capable of communicating. In this paper, we report the results of the first in-depth survey on the general population concerning the preferences and use of ADs in Japan. Method A (...) self-administered questionnaire was sent via mail to a stratified random sampling of 560 residents listed in the residential registry of one district of Tokyo, Japan (n = 165,567). Association between correlating factors and specific preferences toward ADs was assessed using contingency table bivariate analysis and multivariate regression model to estimate independent contribution. Results Of the 560 questionnaires sent out, a total of 425 participants took part in the survey yielding a response rate of 75.9 %. The results of the present study indicate that: 1) the most important components to be addressed are the specifics of medical treatment at the end of life stage and disclosure of diagnosis and prognosis; 2) the majority of participants found it suitable to express their directives by word to family and/or physician and not by written documentation; 3) there is no strong need for legal measures in setting up an AD; 4) it is permissible for family and physician to loosely interpret one's directives; 5) the most suitable proxy is considered to be a family member, relative, or spouse. Multivariate analysis found the following five factors as significantly associated with preferences: 1) awareness regarding living wills, 2) experience with the use of ADs, 3) preferences for end-of-life treatment, 4) preferences for information disclosure, and 5) intentions of creating a will. Conclusions Written ADs might be useful in the Japanese setting when the individual either wishes: 1) to not provide a lot of leeway to surrogates and/or caregivers, and/or 2) to ensure his or her directives in the cases of terminal illness, brain death, and pain treatment, as well as regarding information disclosure. (shrink)

Background: In the variegated legislative framework on advance directives, the first specific regulation in Italy on this issue came into force only in 2018. Research objective: This qualitative study aimed to investigate the implications of the new Italian law on advance directives in clinical practice from the perspective of those who deal with this delicate ethical issue on an everyday basis, that is, Italian healthcare professionals. Research design: A qualitative research design using semi-structured audio-recorded interviews was adopted. The (...) data collection and analysis were performed according to the Grounded Theory approach. Participants: Nineteen healthcare professionals (16 nurses, 3 physicians) working in a palliative care unit of a research and clinical institute in Italy. Ethical considerations: The study is part of the WeDistress HELL Project (WEllness and DISTRESS in HEalth care professionals dealing with end of Life and bioethicaL issues) approved by the Ethical Committee of ICS Maugeri - Institute of Pavia (Italy). Findings: The authors identified a main overall category, ‘Pros and Cons of the Italian law on advance directives’, composed of six constituent categories: Positive welcome, Self-determination and protection, Prompts for future betterment, Uncertainties, Lack of knowledge, and Neutrality and no suggestions. Discussion: The Italian law n. 219/2017 on advance directives was seen as a legal instrument possessing both strengths and weaknesses, but able to guarantee the patient’s self-determination and support healthcare professionals in providing care according to patients’ wishes. Conclusion: An understanding of the healthcare providers’ perspective may support the discussion on advance directives and bridge the gaps that currently persist in handling ethical issues. (shrink)

In many industrialized countries ethicists and lawyers favour advance directives as a tool to guarantee patient autonomy in end-of-life-decisions. However, most citizens seem reluctant to adopt the practice; the number of patients who have an advance directive is low across most countries. The article discusses the key argument for seeing such documents as an instrument of self-interpretation and life-planning, which ultimately have to be interpreted by third parties as well. Interpretation by third parties and the process of (...) self-reflection are conceptually linked by a qualitative concept of identity. Identity is conceived here as constructed in a processual dialogue between a personal and a cultural perspective. How the cultural dimension comes into play in understanding the motivation, rejection or content of wished for end-of-life-decisions, is shown by a brief review of empirical and cultural studies. Understanding advance directives as a culturally embedded tool of self-interpretation should help to overcome urgent moral problems in clinical settings: how to interpret such documents, how to deliberate on the content and on the best form. (shrink)

This is a new edition of a classic textbook in health care ethics, one that offers an alternative to the principle-based approach from Beauchamp and Childress (Principles of Biomedical Ethics, now in its seventh edition from OUP) and traditional Catholic approaches of Ashley and O'Rourke. In the early chapters Devettere spells out the meaning of ethics and the importance of prudential reasoning in seeking the good life. The rest of the book deals with issues and cases, including determinations (...) of life and death, reproduction and research and genetics, and the distribution of health care. In this fourth edition Devettere updates all chapters and adds new cases and new sections on the following: neuroscience, social psychology, overriding advance directives, studies on the fetus, the palliative care movement, cardiopulmonary resuscitation, pharmacists and reproductive issues, prenatal life and abortion, neonatal testing and mandatory vaccinations, the US governments' STD research in Guatemala, the emergence of biobanks, facial transplantations, genetic testing, legal issues around the Affordable Care Act, and more. This is an accessible and comprehensive textbook covering all aspects of the field. (shrink)

In the face of mounting criticism against advance directives, we describe how a novel, computer-based decision aid addresses some of these important concerns. This decision aid, Making Your Wishes Known: Planning Your Medical Future , translates an individual's values and goals into a meaningful advance directive that explicitly reflects their healthcare wishes and outlines a plan for how they wish to be treated. It does this by (1) educating users about advance care planning; (2) helping (...) individuals identify, clarify, and prioritize factors that influence their decision-making about future medical conditions; (3) explaining common end-of-life medical conditions and life-sustaining treatment; (4) helping users articulate a coherent set of wishes with regard to advance care planning—in the form of an advance directive readily interpretable by physicians; and (5) helping individuals both choose a spokesperson, and prepare to engage family, friends, and health care providers in discussions about advance care planning. (shrink)

This article reviews recent developments in health care law, focusing on the engagement of law as a partner in health care innovation. The article addresses: the history and contents of recent United States federal law restricting the use of genetic information by insurers and employers; the recent federal policy recommending routine HIV testing; the recent revision of federal policy regarding the funding of human embryonic stem cell research; the history, current status, and need for future attention (...) to advance directives; the recent emergence of medical–legal partnerships and their benefits for patients; the obesity epidemic and its implications for the child’s right to health under international conventions. (shrink)

Numerous studies have shown almost uniformly positive opinions among patients and physicians regarding theconceptof advance directives (either a healthcare proxy or living will). Several of these studies have also shown that the actual use of advance directives is significantly lower than this enthusiasm would suggest, but they have not explained the apparent discordance. Nor have researchers explained why members of minority groups are much less likely to complete advance directives than are white patients. In this study, we (...) used a focus group methodology to examine the ways in which diverse populations of patients view the medical, philosophical, and practical issues surrounding advance directives. We were motivated by the significantly lower prevalence of advance directives among African-American and Hispanic patients at one urban teaching hospital (18% for Caucasians, 4% for African-Americans, and 2% for Hispanics). Our premise was that African-American and Hispanic populations, who have had higher rates of morbidity and mortality across numerous disease categories, and historically have had limited access to care and opportunities to discuss health concerns, may be more suspicious about the right of autonomy that an advance directive is designed to ensure. (shrink)

Recently, debate over whether health care providers should have a protected right to conscientiously refuse to offer legal health care services—such as abortion, elective sterilization, aid in dying, or treatments for transgender patients—has grown exponentially. I advance a modified compromise view that bases respect for claims of conscientious refusal to provide specific health care services on a publicly defensible rationale. This view requires health care providers who refuse such services to disclose (...) their availability by other providers, as well as to arrange for referrals or facilitate transfers of care. This requirement raises the question of whether providers are being forced to be complicit in the provision of services they deem to be morally objectionable. I conclude by showing how this modified compromise view answers the most significant objections mounted by critics of the right to conscientious refusal and safeguards providers from having to offer services that most directly threaten their moral integrity. (shrink)

A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these—epistemic indeterminacy and metaphysical indeterminacy—should be addressed in laws/policies regarding advance directives for euthanasia.

Advance directives are instructions on health care. Executed by a mentally competent individual, an advance directive becomes active in the event that the person loses mental capacity to make health care decisions. Many social workers have embraced advance directives on the basis that they promote self-determination at the end of life. However, on closer inspection, undergirding the rationale for advance directives are complex philosophical theories and concepts that include: self-determination; the good (...) death; congruity between the former mentally competent person and the current incapacitated self; and ethics of care. This paper discusses the philosophy, more specifically, bioethics?the discipline that deals with ethical questions that result from advances in medicine?as it relates to advance directives. In order to contextualize the discussion on a macro level, the United States will be used as a case study. Clinical examples will present ideological conflicts that have the potential to result in social work practice dilemmas. Addressed also are recommendations for social workers in both direct and indirect practice. (shrink)

Background In Spain, there has been great effort by lawmakers to put Advance Directives into practice since 2002. At the same time, the field of bioethics has been on the rise, a discipline that has spurred debate on the right of patients to exercise their autonomy. Despite all this, the implementation of ADs can be said to have failed in Spain, because its prevalence is very low, there is a great lack of knowledge about them and they have very (...) little impact on clinical decisions. The purpose of this article is to analyze and discuss the main reasons for the failure of ADs in Spain. Main body The main reasons why ADs have no impact on clinical practice in Spain have been fundamentally four: the training of health professionals about the end of life and AD is lacking; there has been no public process to increase awareness about AD, and therefore people know little about them; the bureaucratic procedure to document and implement ADs is excessively complex and cumbersome, creating a significant barrier to their application; in Spain, the remnants of a paternalistic medical culture continue to exist, which causes shared decision-making to be difficult. Conclusion Due to the four reasons mentioned above, AD have not been a useful tool to help honor patients’ autonomous decisions about their future care and, therefore, they have not achieved their objective. However, despite the difficulties and problems identified, it has also been observed that health care professionals and the Spanish public have a very positive view of AD. Having identified the problems which have kept AD from being successful, strategies must be developed to help improve their implementation into the future. (shrink)

Advance directives are written documents that give patients the opportunity to communicate their preferences regarding treatments they do or do not want to receive in case they become unable to make decisions. Commonly used pre-printed forms have different formats. Some offer space for patients to appoint a surrogate decision maker, and/or to determine future medical treatments and/or give a statement of personal values. So far it is unknown which forms GPs preferably use and why they decide to do so. (...) 23 semi-structured interviews with GPs were analysed using content analysis. Interviewees mainly use short templates and medium length templates with checkboxes to indicate patients’ preferences in regards to life prolonging measures. Especially when patients faced the progression of a disease, participants use the latter version. Only then, the interviewees remarked, patients are capable to rate concrete situations reliably. GPs also realize the importance of the verbal assessment of patients’ preferences; however they rarely keep a written form of the conversation. Some GPs hand out one or more templates and ask their patients to read and think about them at home with the option to talk to them about it later on, while others prefer their patients to fill them out alone at home. Regardless of template usage, most GPs emphasize that ADs require regular updates. GPs tend to see standardized advance directives mainly as a tool to start a conversation with their patients and to identify their real preferences and values. When the patient is still not facing the progression of an already existing disease it could be sufficient to only appoint a surrogate decision maker instead of creating a full AD. However, in all other situations, appointing a surrogate decision maker should be backed up by a written statement of a patient’s general values. Patients and their relatives should always have the opportunity to ask their GP for medical advice when drafting an AD. It is crucial to regularly verify and update existing ADs within the course of a disease. (shrink)