Should living wills be legalized?

Living wills allow patients to state their wish to die and not be kept alive through the use of medications, artificial means or "heroic" measures. They have been made legal documents in 38 states in the United States. Living wills permit advance expression of a patient''s wishes, promote effective communication and demonstrate respect for the patient as a person. Problems with legal recognition of such wills include the need for agreement on fundamental terms, possible restriction of patients'' rights, limitation of options in decision-making and possible negative effects on the physician-patient relationship. Before legislation is enacted, public and professional attitudes toward the care of terminally ill patients should be assessed. All health care professionals should receive better education in this area, and palliative care services should be made more widely available. Only if these measures fail should living wills be made legal documents in Canada.     

Advance directives, autonomy and unintended death

This Paper argues that Living wills are typically nebulous and confused documents that do not effectively enable you to determine your future treatment. Worse, signing a living will can end your life in ways you never intended, long before you are either incompetent or terminally ill. This danger is compounded by the fact that those who implement living wills are often themselves dangerously confused, so that, for example, they cannot be relied upon to distinguish living wills from DNR orders. In addition, the Paper argues that advance directives concerning resuscitation are often so confused that they end the lives of healthy, alert people who have not suffered cardiac or pulmonary arrest. Finally, the paper argues that advance directives establishing durable power of attorney for health care often preserve the chief dangers of living wills. Suggestions are offered as to how you can most effectively direct your future treatment without endangering your life.     

Adversaries at the Bedside: Advance Care Plans and Future Welfare

Advance care planning refers to the process of determining how one wants to be cared for in the event that one is no longer competent to make one's own medical decisions. Some have argued that advance care plans often fail to be normatively binding on caretakers because those plans do not reflect the interests of patients once they enter an incompetent state. In this article, we argue that when the core medical ethical principles of respect for patient autonomy, honest and adequate disclosure of information, institutional transparency, and concern for patient welfare are upheld, a policy that would allow for the disregard of advance care plans is self‐defeating. This is because when the four principles are upheld, a patient's willingness to undergo treatment depends critically on the willingness of her caretakers to honor the wishes she has outlined in her advance care plan. A patient who fears that her caretakers will not honor her wishes may choose to avoid medical care so as to limit the influence of her caretakers in the future, which may lead to worse medical outcomes than if she had undergone care. In order to avoid worse medical outcomes and uphold the four core principles, caregivers who are concerned about the future welfare of their patients should focus on improving advance care planning and commit to honoring their patients’ advance care plans.     

New laws mean MDs must keep up to date on living-will and related legislation.

Lawyer Karen Capen discusses the legal aspects of documents such as living wills, advance directives and "proxies for personal care." Most provinces are enacting legislation to govern such directives, and physicians should keep abreast of new legislation and regulations in their jurisdiction.     

El anciano con enfermedad avanzada de órgano. Consideraciones desde la geriatría,la medicina paliativa y la bioética

Objective

To analyze the literature as regards the knowledge, skills and attitudes that these disciplines can provide in improving technical, ethical and human quality health care in the elderly with advanced organ failure, multimorbidity, frailty and progressive dementia.

Material and methods

A comprehensive review focused on available references on the interrelationship between geriatric medicine and palliative medicine, education in bioethics, prognostic tools, functional status, and the humanization of health care.

Results

Advance care planning, comprehensive geriatric assessment, the study of the values of the patient and their introduction in decision-making process, as well as the need to promote moral, care, and healthcare organizational ethics, are essential elements to achieve this objective.

Conclusions

Practitioners and healthcare organizations should seek excellence as a moral requirement. To achieve this, there is a priority to acquire virtues of care and fundamental concepts of geriatric and palliative medicine, assessing functional status, advance care planning and patient/family needs as essential issues to protect, care for and promote them in all care settings.     

Canadian outpatients and advance directives: poor knowledge and little experience but positive attitudes.

OBJECTIVE: To examine the knowledge of, previous experience with, attitudes toward and perceived barriers to completing advance directives among outpatients at two general medicine clinics. DESIGN: Cross-sectional questionnaire administered in face-to-face structured interviews. SETTING: General internal-medicine outpatient clinics at a university teaching hospital. PATIENTS: One hundred and five adult outpatients who could communicate in spoken English and who consented to be interviewed. RESULTS: Of 167 patients approached, 58 were excluded because they could not communicate in spoken English, and 4 refused to participate. Of the remaining 105 patients, 17 (16%) knew about living wills, 12 (11%) about durable powers of attorney for health care and 4 (4%) about advance directives. Twenty-three (22%) had thought about their preferences for life-sustaining treatment, 20 (19%) had discussed them, none had written them down, and 45 (43%) had thought about choosing a proxy. Sixty-one (58%) wanted to think about their preferences for treatment, 65 (62%) wanted to discuss them, 32 (30%) wanted to write them down, and 80 (76%) wanted to choose a proxy. The perceived barriers to completing an advance directive were inability to write, the belief that an advance directive was unnecessary, a fatalistic attitude, previous discussion of preferences, a desire to leave the decision to doctors, uncertainty about preferences, a desire to discuss preferences rather than document them, a desire to wait until the situation arose, a desire to write down preferences in the future and a desire to avoid thinking about preferences or advance directives. Respondents with more knowledge of life-sustaining treatments were more likely to want to complete an advance directive. CONCLUSIONS: Outpatients have positive attitudes toward advance directives, but their knowledge and experience are limited. These data underscore the need for patient education and for policies to eliminate the barriers to completing advance directives that patients face.     

Outcomes of written living wills in Japan--a survey of the deceased ones' families

A study was recently done to investigate the outcomes of written living wills in Japan, which, unlike the United States, does not legally recognize advance directives. This study collected demographic information and predictors of living will use among families and guardians who used the living will form provided by the Japan Society for Dying with Dignity. According to the results of the study, affliction with cancer and death in a hospital was the best predictor of written living will use. Research on physicians' treatment limitation and withdrawal behaviors in the clinical setting is needed to better understand the actual impact of living wills. Such research can provide better understanding of where boundaries of self-determination are drawn and how to respect autonomy in Japan.     

RECLAIMING THE PATIENT'S VOICE AND SPIRIT IN DYING: AN INSIGHT FROM ISRAEL

In the latter half of the 20th century, Western medicine moved death from the home to the hospital. As a result, the process of dying seems to have lost its spiritual dimension, and become a matter of prolonging material life by means of medical technology. The novel quandaries that arose led in turn to medico‐legal regulation. This paper describes the recent regulation of dying in Israel under its Dying Patient Law, 2005. The Law recognizes advance directives in principle, but limits their effect and form through complex medico‐legal artifices. It reflects a culture that places high value on both scientific medicine and the sanctity of life as such, and illustrates a medical culture that pitches battle against death. At the same time, the Law constructs the will of the individual in a medico‐legal language that is alien to the lay person. The paper suggests an alternative approach to advance care planning that is patient‐centred and addresses the psycho‐social needs of the individual in terms of her relational autonomy. From this perspective, advance care planning becomes an opportunity to extract the patient from the medical context and allow her to speak about her approaching death with close ones in her own terms of reference. To this end, there is a need for facilitation of an intimate encounter where patients can speak about their concerns with their loved ones. The paper also presents a methodological approach of attentive listening, which can be applied across diverse cultures and circumstances.     

Preparing for (life after) death: Advance care directives and cyclic temporalities

This paper explores the disjuncture between medico‐legal trajectories of living and dying, in which lives start and stop, and the cyclic comings and goings of Buddhist and Hindu bodies. Drawing on fieldwork with Buddhist and Hindu communities in Adelaide, South Australia, I attend to the multiple temporalities that become implicated in end‐of‐life decision‐making about how and when a person may die. Thus, I reorient advance care planning from the linear projection of a single life towards cyclic considerations of the life course. In regarding life and death as ongoing I make space for temporalities of living and dying that run counter to public policy instruments, which focus on an irrevocable, yet calculable, end to life. I demonstrate how advance care planning processes and documents that construct the life course as advancing in a singular, linear and predictable trajectory overlook the multiple temporalities and directions that lives and deaths may take.     

The Ethical Imperative to Move to a Seven-Day Care Model

Whilst the nature of human illness is not determined by time of day or day of week, we currently structure health service delivery around a five-day delivery model. At least one country is endeavouring to develop a systems-based approach to planning a transition from five- to seven-day healthcare delivery models, and some services are independently instituting program reorganization to achieve these ends as research, amongst other things, highlights increased mortality and morbidity for weekend and after-hours admissions to hospitals. In this article, we argue that this issue does not merely raise instrumental concerns but also opens up a normative ethical dimension, recognizing that clinical ethical dilemmas are impacted on and created by systems of care. Using health policy ethics, we critically examine whether our health services, as currently structured, are at odds with ethical obligations for patient care and broader collective goals associated with the provision of publicly funded health services. We conclude by arguing that a critical health policy ethics perspective applying relevant ethical values and principles needs to be included when considering whether and how to transition from five-day to seven-day models for health delivery.     

Acculturation and end-of-life decision making: comparison of Japanese and Japanese-American focus groups

Variation in decision-making about end-of-life care among ethnic groups creates clinical conflicts. In order to understand changes in preferences for end-of-life care among Japanese who immigrate to the United States, we conducted 18 focus groups with 122 participants: 65 English-speaking Japanese Americans, 29 Japanese-speaking Japanese Americans and 28 Japanese living in Japan. Negative feelings toward living in adverse health states and receiving life-sustaining treatment in such states permeated all three groups. Fear of being meiwaku, a physical, psychological or financial caregiving burden on loved ones, was a prominent concern. They preferred to die pokkuri (popping off) before they become end stage or physically frail. All groups preferred group-oriented decision-making with family. Although advance directives were generally accepted, Japanese participants saw written directives as intrusive whereas Japanese Americans viewed them mainly as tools to reduce conflict created by dying person's wishes and a family's kazoku no jo--responsibility to sustain the dying patient. These findings suggest that in the United States Japanese cultural values concerning end-of-life care and decision-making process are largely preserved.     

Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study

ObjectiveTo clarify the practice of withholding the artificial administration of fluids and food from elderly patients with dementia in nursing homes.DesignQualitative, ethnographic study in two phases.Setting10 wards in two nursing homes in the Netherlands.Participants35 patients with dementia, eight doctors, 43 nurses, and 32 families.ResultsThe clinical course of dementia was considered normal and was rarely reason to begin the artificial administration of fluids and food in advanced disease. Fluids and food seemed to be given mainly when there was an acute illness or a condition that needed medical treatment and which required hydration to be effective. The medical condition of the patient, the wishes of the family, and the interpretations of the patients'' quality of life by their care providers were considered more important than living wills and policy agreements.ConclusionsDoctors'' decisions about withholding the artificial administration of fluids and food from elderly patients with dementia are influenced more by the clinical course of the illness, the presumed quality of life of the patient, and the patient''s medical condition than they are by advanced planning of care. In an attempt to understand the wishes of the patient doctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family.

What is already known on this topic

Debate has focused on whether it is beneficial to withhold the artificial administration of fluids and food from patients with advanced dementia

What this study adds

The course of dementia, the patient''s quality of life, and the patient''s current medical condition influence doctors'' decision making more than advanced planning of careDoctors try to create the broadest possible basis for the decision making process and its outcome, mainly by involving the family     

The Ethics of Research Biobanking: A Critical Review of the Literature

Abstract

Human tissue has been stored and used for research on a regular basis for more than 80 years. During the 1990s, collections of human tissue suddenly became framed as ethical problems in a process reflecting developments in genetic research intertwined with developments in patient rights and steps towards increased commercialization of research. This review describes the process of framing tissue storage as an ethical problem and the solutions proposed in the process. It gives an overview of the academic debate and relates this debate to empirical studies of donor attitudes and interests. It points to the clear discrepancy between the concerns of donors, legislators and ethicists. The academic debate and legislatory action tend to focus on informed consent, and most of the concerns that donors have remain unattended to.     

Trajectory of end-stage heart failure: the influence of technology and implications for policy change

Patients with end-stage heart failure have a trajectory of illness characterized by an overall gradual decline in function punctuated by periods of symptom exacerbation followed by a return nearly to their baseline. These exacerbations are not predictable. Death may come suddenly and unexpectedly for each patient, even though predictive models can draw an accurate survival curve by averaging the experience of a substantial number of people with heart failure. Heart failure patients often have treatable symptoms, such as dyspnea, fatigue, and generalized pain. In this article, we explain the trajectory of patients with heart failure, illustrate the importance of advance care planning for these patients, discuss the impact of choices to use or forgo new technologies, and suggest ways to improve the care system. Only by reexamining our health care spending priorities can we create a sustainable care system that allows patients to live both long and comfortably, reaching a balance that serves them and their communities well.     

Planificación anticipada de los cuidados y del uso de recursos hospitalarios en pacientes con COVID-19 en un programa de atención integrada para adultos mayores frágiles en residencias

ObjectivesTo estimate the magnitude and importance of a process of stratification and advance care planning and the use of health resources, among patients in an integrated health care program for frail elderls in nursing homes,that were referred to the hospital with COVID-19.Material and methodsProspective cohort study of patients > 64 years old with COVID-19 infection, in a health care program in nursing homes (from 3/15/2020 to 9/15/2020). The identification of patients with palliative needs, the performing and visible registration in electronic health records of the advance care planning and the use of intensive care were assessed.ResultsWe included 374 COVID-19 patients. 88% were women, the median age was 88 years old. The 79% were patients with palliative needs, of which 68% had the advance care planning (P<.001) registered in the electronic health record. Only 1% of patients with palliative needs and severity criteria were admitted to the intensive care unit. Overall mortality was 25%. Of those who died, 74% had severity criteria (P<.001) and 90% had palliative needs (P<.001).ConclusionsCarrying out a care process based on identification of patients with palliative needs and advance care planning and a central and visible registration of advance care planning in health records, could improve the quality and safety of care and optimize the use of intensive care health resources at all times and especially in public health emergencies.     

Precision animal breeding

We accept that we are responsible for the quality of life of animals in our care. We accept that the activities of man affect all the living things with which we share this planet. But we are slow to realize that as a result we have a duty of care for all living things. That duty extends to the breeding of animals for which we are responsible. When animals are bred by man for a purpose, the aim should be to meet certain goals: to improve the precision with which breeding outcomes can be predicted; to avoid the introduction and advance of characteristics deleterious to well-being; and to manage genetic resources and diversity between and within populations as set out in the Convention on Biological Diversity. These goals are summed up in the phrase precision animal breeding. They should apply whether animals are bred as sources of usable products or services for medical or scientific research, for aesthetic or cultural considerations, or as pets. Modern molecular and quantitative genetics and advances in reproductive physiology provide the tools with which these goals can be met.     

Ecotoxicity testing: science, politics and ethics

Animal welfare organisations have long been concerned about the use of animals for ecotoxicity testing. Ecotoxicity testing is a necessary part of the statutory risk assessment of chemicals that may be released into the environment. It is sometimes also carried out during the development of new chemicals and in the investigation of pollution in the field. This review considers the existing requirements for ecotoxicity testing, with particular reference to practices in the European Union, including the recent REACH system proposals, before discussing criticisms that have been made of existing practices for environmental risk assessment. These criticisms have been made on scientific and ethical grounds, as well as on questions of cost. A case is made for greater investment in the development of alternative testing methods, which could improve the science, as well as serving the cause of animal welfare. It has frequently been suggested that the statutory requirements for environmental risk assessment are too rigid and bureaucratic. A case is made for flexibility and the greater involvement of scientists in the risk assessment procedure, in the interests of both improved science and improved animal welfare.     

‘VAGUE OVIEDO’: AUTONOMY,CULTURE AND THE CASE OF PREVIOUSLY COMPETENT PATIENTS

The paper examines the ethical and legal challenges of making decisions for previously competent patients and the role of advance directives and legal representatives in light of the Oviedo Convention. The paper identifies gaps in the Convention that result in conflicting instructions in cases of a disagreement between the expressed prior wishes of a patient, and the legal representative. The authors also examine the legal and moral status of informally expressed prior wishes of patients unable to consent. The authors argue that positivist legal reasoning is insufficient for a consistent interpretation of the relevant provisions of the Convention and argue that ethical argumentation is needed to provide guidance in such cases. Based on the ethical arguments, the authors propose a way of reconciling the apparent inconsistencies in the Oviedo Convention. They advance a culturally sensitive approach to the application of the Convention at the national level. This approach understands autonomy as a broader, relational consent and emphasizes the social and cultural embeddedness of the individual. Based on their approach, the authors argue that there exists a moral obligation to respect the prior wishes of the patient even in countries without advance directives. Yet it should be left to the national legislations to determine the extent of this obligation and its concrete forms.