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.

Advance Healthcare Directives: Binding or Informational Value?

Advance directives entail a refusal expressed by a still-healthy patient. Three consequences stem from that fact: (a) advance refusal is unspecific, since it is impossible to predict what the patient's conditions and the risk-benefit ratio may be in the foreseeable future; (b) those decisions cannot be as well informed as those formulated while the disease is in progress; (c) while both current consent and refusal can be revoked as the disease unfolds, until the treatment starts out, advance directives become effective when the patient becomes incapable or unconscious; such decisions can therefore not be revoked at any stage of the disease. Therefore, advance directives are binding for doctors only at the stage of advance treatment planning, i.e., only if they refer to an illness already in progress.

Why I wrote my advance decision to refuse life-prolonging treatment: and why the law on sanctity of life remains problematic.

This paper, pursuing themes indefatigably defended in this journal and elsewhere by Professors Jenny and Celia Kitzinger, explains what led me to write my own advance decision (AD) to refuse life-prolonging treatment if I become legally incapacitated to make my own healthcare decisions for longer than 3 months and am medically assessed as very unlikely to regain such legal capacity. I attach my Advance Decision to Refuse Life Prolonging Treatment to the online version of this paper for comment advice and possible general interest. I argue that while a Supreme Court judgement in 2013, followed by a Court of Protection judgement in 2015 greatly ameliorate my earlier concerns about excessive judicial emphasis on the sanctity of life, certain current requirements in the Code of Practice to the Mental Capacity Act 2005 and in the Rules of the Court of Protection, especially Practice Direction 9E, concerning permanent vegetative state and minimally conscious state, seem clearly to contradict aspects of that Supreme Court judgement. If the logical implications of those legal requirements were thoroughly implemented medical practice would be substantially and undesirably skewed towards provision of treatments to prolong life that are unwanted, non-beneficial and wasteful of healthcare resources. I urge that these legal requirements are modified to make them consistent with the Supreme Court's judgement in Aintree v James.

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.

[Ethical issues of artificial nutritional support]. / Ethische Fragen der künstlichen Ernährung.

This review article discusses some ethical issues of clinical nutrition according to the Beauchamp and Childress principles of bioethics: "respect for autonomy, nonmaleficence, beneficence, and justice".

[Passive euthanasia and living will]. / Passzív eutanázia és végakarat.

This article deals with the intentional distinction between murder of first degree and passive euthanasia. In Hungary, active euthanasia is considered to be a murder of first degree, whilst the Netherlands, Belgium, Luxemburg and Switzerland have legalized the active form of mercy killing in Europe. The palliative terminal care, when e.g. giving pain-killer morphine to the patient, might result in decreasing the patient's life-span, and thus causing indirect euthanasia. However, the legal institution of living will exists in several counter-euthanasia countries. The living will allows future patients to express their decision in advance to refuse a life-sustaining treatment, e.g. in case of irreversible coma. The institution of living will exists in Germany and in Hungary too. Nevertheless, the formal criteria of living will make it hardly applicable. The patient ought to express his/her will before a notary public in advance, and he/she should hand it over when being hospitalized. If the patient is not able to present his/her living will to his/her doctor in the hospital, then his/her only hope remains that he/she has given a copy of the living will to the family doctor previously, and the family doctor will notify the hospital.

Significance of past statements: speech act theory.

In W v M, a judge concluded that M's past statements should not be given weight in a best interests assessment. Several commentators in the ethics literature have argued this approach ignored M's autonomy. In this short article I demonstrate how the basic tenets of speech act theory can be used to challenge the inherent assumption that past statements represent an individual's beliefs, choices or decisions. I conclude that speech act theory, as a conceptual tool, has a valuable contribution to make to this debate.

Advance directives and living wills: the role of patient's autonomy in the Brazilian experience.

This paper aims to discuss the development of the notion that the patient has the right to refuse treatment, and how the Brazilian legal system is dealing with bioethical dilemmas, such as the possibility of exercising autonomy through advance directives. The paper discusses the lack of legislation to regulate important issues in the end of life healthcare, and what ethical guidelines exist, providing physicians with ethical and legal parameters to deal with the patient's will.

A direct advance on advance directives.

Advance directives (ADs), which are also sometimes referred to as 'living wills', are statements made by a person that indicate what treatment she should not be given in the event that she is not competent to consent or refuse at the future moment in question. As such, ADs provide a way for patients to make decisions in advance about what treatments they do not want to receive, without doctors having to find proxy decision-makers or having recourse to the doctrine of necessity. While patients can request particular treatments in an AD, only refusals are binding. This paper will examine whether ADs safeguard the autonomy and best interests of the incompetent patient, and whether legislating for the use of ADs is justified, using the specific context of the legal situation in the United Kingdom to illustrate the debate. The issue of whether the law should permit ADs is itself dependent on the issue of whether ADs are ethically justified; thus we must answer a normative question in order to answer the legislative one. It emerges that ADs suffer from two major problems, one related to autonomy and one to consent. First, ADs' emphasis on precedent autonomy effectively sentences some people who want to live to death. Second, many ADs might not meet the standard criteria for informed refusal of treatment, because they fail on the crucial criterion of sufficient information. Ultimately, it transpires that ADs are typically only appropriate for patients who temporarily lose physical or mental capacity.

An analysis of common arguments against Advance Directives.

Advance Directives are under-utilized, both from the fact that few Americans have them and that health professionals don't always rely on Advance Directives provided by patients. Many health professionals have philosophical objections to their use. Using a fictitious case as background, five different objections to the use of Advance Directives will be discussed and arguments against those objections will be posed along with suggestions to improve Advance Directives.

Advance commitment: an alternative approach to the family veto problem in organ procurement.

This article tackles the current deficit in the supply of cadaveric organs by addressing the family veto in organ donation. The authors believe that the family veto matters-ethically as well as practically-and that policies that completely disregard the views of the family in this decision are likely to be counterproductive. Instead, this paper proposes to engage directly with the most important reasons why families often object to the removal of the organs of a loved one who has signed up to the donor registry-notably a failure to understand fully and deliberate on the information and a reluctance to deal with this sort of decision at an emotionally distressing time. To accommodate these concerns it is proposed to separate radically the process of information, deliberation and agreement about the harvesting of a potential donor's organs from the event of death and bereavement through a scheme of advance commitment. This paper briefly sets out the proposal and discusses in some detail its design as well as what is believed to be the main advantages compared with the leading alternatives.

Too soon to give up: re-examining the value of advance directives.

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.

[Chances and limitations of patients' advance decisions at the end of life]. / Möglichkeiten und Grenzen antizipierender Willenserklärungen am Lebensende.

Death by "natural" causes is not appreciated in Western industrialized countries because it may be regarded as an obstacle against performance and consumption. In addition, life-saving therapies for patients with an infaust prognosis are often rather expensive and therefore classified as "futile". Utilitarian measures for the individual's quality of life (QALY's), which are allegedly objective, veil the fact that they can only reflect the parameters that have been considered during their construction. Caused by fear of a life in the nursing home, which is partially intensified by the media, many ethicists and lawyers propagate anticipating models of retaining patients' autonomy at the end of life. Apart from general considerations published by the former National Ethics Council in 2005, the German Parliament in 2009 will have to discuss three different bills concerning patients' advance decisions to refuse medical treatment. The illusion of "autonomous dying" is not a convincing model for the end of life debate.

[Ethical issues in the practice of advance directives, living wills, and self-determination in end of life care].

The Hospice-Palliative Care Act, enacted in Taiwan in 2000, was designed to respect the end of life medical wishes of patients with incurable illnesses, safeguard the rights of these patients, and provide clinical guidelines for healthcare workers responsible to provide end of life care. Self-determination is a core element of human dignity. Advance directive documents include a living will, and durable power of attorney for healthcare. This article reviews current issues and ethical dilemmas with regard to advance directives. Patients, family members, and clinicians may require better education on the Hospice-Palliative Care Act in order to respect more appropriately patient end of life medical care wishes.

[The living will - a helpful tool for communication and decision-making regarding death and dying]. / Die Patientenverfügung als Kommunikations- und Entscheidungsinstrument.

The concept of 'living will', also known as 'advanced directive', emerged in response to modern medical technologies and aggressive medical treatments being implemented in ambiguous situations such as a poor prognostic state. A living will aims at protecting the patient's right to autonomy in such a situation. Ideally, it is a substitute for the actual informed consent or refusal in situations where the individual is unable to express his or her will due to incapacity. At least, a living will can usefully inform medical-ethical decision-making on behalf of an incompetent patient. A living will can either be very general or very specific. It may hold specific directives about the use or foregoing of potentially burdensome medical treatments including food and water to be supplied by feeding tubes or other medical devices. In addition of being a helpful tool for respecting a patient's autonomy, a living will may be regarded as an opportunity for improving communication about death and dying with patients and healthy people alike.

TRIAD XII: Are Patients Aware of and Agree With DNR or POLST Orders in Their Medical Records.

OBJECTIVE: The aim of the study was to determine (1) whether do-not-resuscitate (DNR) orders created upon hospital admission or Physician Orders for Life-Sustaining Treatment (POLST) are consistent patient preferences for treatment and (2) patient/health care agent (HCA) awareness and agreement of these orders. METHODS: We identified patients with DNR and/or POLST orders after hospital admission from September 1, 2017, to September 30, 2018, documented demographics, relevant medical information, evaluated frailty, and interviewed the patient and when indicated the HCA. RESULTS: Of 114 eligible cases, 101 met inclusion criteria. Patients on average were 76 years old, 55% were female, and most white (85%). Physicians (85%) commonly created the orders. A living will was present in the record for 22% of cases and a POLST in 8%. The median frailty score of "4" (interquartile range = 2.5) suggested patients who require minimal assistance. Thirty percent of patients requested cardiopulmonary resuscitation and 63% wanted a trial attempt of aggressive treatment if in improvement is deemed likely. In 25% of the cases, patients/HCAs were unaware of the DNR order, 50% were unsure of their prognosis, and another 40% felt their condition was not terminal. Overall, 44% of the time, the existing DNR, and POLST were discordant with patient wishes and 38% were rescinded. Of the 6% not rescinded, further clarifications were required. Discordant orders were associated with younger, slightly less-frail patients. CONCLUSIONS: Do-not-resuscitate and POLST orders can often be inaccurate, undisclosed, and discordant with patient wishes for medical care. Patient safety and quality initiatives should be adopted to prevent medical errors.

Speaking for Our Father.

A living will is a document in which an individual can communicate his or her health care choices to loved ones in the event that he or she is unable to do so directly. Many surrogate decision-makers use living wills as guides; however, the existence of such documents does not entirely relieve them of their burden. Surrogate decision-makers often need to consider the impact of the personal and family burdens entailed by their decisions, and the stress accompanying these burdens regularly creates high levels of anxiety and depression. This stress can be exacerbated when two surrogate decision-makers are at loggerheads as to the best way forward. This case study illustrates the effects of stress accompanying disagreement among surrogate decision-makers-here, the patient's adult sons-and demonstrates that a process of listening can help the bioethicist identify the values that are important to the patient and, consequently, to the surrogate as well, and use these values to help address the issue.