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)

Advance directives are useful ways to express one's wishes about end of life care, but even now most people have not completed one of the documents. David Doukas and William Reichel strongly encourage planning for end of life care. Although Planning for Uncertainty is at times fairly abstract for the general reader, it does provide useful background and practical steps.

Largely, the concept of energy or vital force, as first analysed by Placide Tempels in Bantu Philosophy , permeates most African ontology systems, worldviews and life views. The Ntomba Chief is chosen because of his above average vital force. This puts him in the position of intermediary between the Supreme Being, the ancestors, and his subordinates. The waning of his energy is incompatible with his position because his energy is that of his tribe. When installed, he takes an oath that, (...) when this happens, he has to accept mohilo , the 'hastening of death'. In the Chief's case, the hastening of death is not intended to relieve his pain, as it would be with other creatures. The Chief's dying a natural death would result in the loss of the entire community's vital force. Therefore, he has to be killed ritually to avoid that risk. That the Chief agrees to be killed – via a form of advanced directive – poses an ethical dilemma for a Western observer. From the Ntomba perspective, however, where the energy is being, and being is energy, it is the only way to preserve and protect the community's raison d'être. (shrink)

The development of the Values History instrument for use in advance directive decision making has raised the question of the importance of values in eliciting advance directives. This pilot study examines the relationship between the domains of values and advance directives drawn from the Values History in three generation intrafamily triads. Significant correlations between values and advance directives were found primarily within the youngest generation. Results reveal a relatively high familiarity by the participants of the various established forms of advance (...) directives. Also, a significant percentage of parents and grand- parents was found to have signed some form of advance directive. (shrink)

The paper investigates whether it is plausible to hold the late stage demented criminally responsible for past actions. The concern is based on the fact that policy makers in the United States and in Britain are starting to wonder what to do with prison inmates in the later stages of dementia who do not remember their crimes anymore. The problem has to be expected to become more urgent as the population ages and the number of dementia patients increases. This paper (...) argues that the late-stage demented should not be punished for past crimes. Applicable theories of punishment, especially theories with an appropriate expressivist, or communicative element, fail to justify the imprisonment of the late-stage demented. Further imprisonment would require a capacity for comprehension on the part of the punished, and, under certain narrowly specified conditions, even a capacity to be at least in principle capable of recalling the crime again. (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.

Defenders of patient autonomy have successfully supported the legal adoption of advance directives. More recently, some defenders of patient autonomy have also supported the legalization of voluntary active euthanasia. This paper explores the wisdom of combining both practices. If euthanasia were to become legal, should it be permitted by advance directives? The paper juxtaposes the most significant doubts about advance directives, with the most significant doubts about euthanasia. It argues that the doubts together raise more concern about the combined practices (...) than about either euthanasia or advance directives separately. Not all cases of voluntary euthanasia by advance directive are equally problematic, however. Advance directives can help in the defense of euthanasia for patients who make the request in advance and reaffirm it under circumstances of severe suffering. Keywords: advance directives, durable power of attorney, euthanasia, living will, patient interests CiteULike Connotea Del.icio.us What's this? (shrink)

Advance directives are not a part of the healthcare service in Turkey. This may be related with the fact that paternalism is common among the healthcare professionals in the country, and patients are not yet integrated in the decision-making process adequately. However, starting from the enactment of the Regulation of Patient Rights in 1998, this situation started to change. While the paternalist tradition still appears to be strong in Turkey, the Ministry of Health has been taking concrete measures in the (...) recent years to ensure that patient rights are implemented in healthcare practice. Therefore, Turkey now seems to be in a transitional period where a move towards a more patient-autonomy centred approach is being supported by the regulatory authorities, as well as the academic circles and the public at large. In the light of this background, this paper aims to examine the potential benefits of advance directives, particularly with regard to their possible effect in the clinical decision-making process of Turkey's context. It will be argued that advance directives, if correctly understood and implemented in the right settings, may be beneficial, particularly for improving communication between patients and healthcare professionals and for implementing of the right to refuse treatment. (shrink)

Should advance directives (ADs) such as living wills be employed to direct the care of the severely demented? In considering this question, I focus primarily on the claims of Rebecca Dresser who objects in principle to the use of ADs in this context. Dresser has persuasively argued that ADs are both theoretically incoherent and ethically dangerous. She proceeds to advocate a Best Interest Standard as the best way for deciding when and how the demented ought to be treated. I put (...) forth a compromise position: both ADs and the Best Interest Standard have roles to play in guiding the care of the severely demented. (shrink)

Some people in Japan are still comfortable with the paternalistic role of doctors, but others wish that their own decisions would receive a greater amount of respect. A total of 747 students of universities and colleges and 114 parents of these students participated in a questionnaire survey. Most of the participants thought that autonomy should be respected in situations involving death with dignity and euthanasia, whereas it should not be respected in attempted suicide and involuntary admission of individuals with mental (...) illness. A cluster analysis revealed that the participants could be divided into the following groups: aid in dying advocates (n = 577), complete libertarians (n = 109), protectors of the mentally ill (n = 90), complete paternalists (n = 29), and questionables (n = 27). The assertion of independence score of the Scale for Independent and Interdependent Construal of the Self showed a significant difference among the 5 clusters. These findings suggest that the traditional paternalistic relationship between doctor and patient is undergoing a gradual transformation in Japan. (shrink)

BackgroundThe knowledge of scientific dishonesty is scarce and heterogeneous. Therefore this study investigates the experiences with and the attitudes towards various forms of scientific dishonesty among PhD-students at the medical faculties of all Norwegian universities.MethodAnonymous questionnaire distributed to all post graduate students attending introductory PhD-courses at all medical faculties in Norway in 2010/2011. Descriptive statistics.Results189 of 262 questionnaires were returned (72.1%). 65% of the respondents had not, during the last year, heard or read about researchers who committed scientific dishonesty. One (...) respondent had experienced pressure to fabricate and to falsify data, and one had experienced pressure to plagiarize data. On average 60% of the respondents were uncertain whether their department had a written policy concerning scientific conduct. About 11% of the respondents had experienced unethical pressure concerning the order of authors during the last 12 months. 10% did not find it inappropriate to report experimental data without having conducted the experiment and 38% did not find it inappropriate to try a variety of different methods of analysis to find a statistically significant result. 13% agreed that it is acceptable to selectively omit contradictory results to expedite publication and 10% found it acceptable to falsify or fabricate data to expedite publication, if they were confident of their findings. 79% agreed that they would be willing to report misconduct to a responsible official.ConclusionAlthough there is less scientific dishonesty reported in Norway than in other countries, dishonesty is not unknown to doctoral students. Some forms of scientific misconduct are considered to be acceptable by a significant minority. There was little awareness of relevant policies for scientific conduct, but a high level of willingness to report misconduct. (shrink)

This article explores universal normative bases that could help to shape a workable legal construct that would facilitate a global use of advance directives. Although I believe that advance directives are of universal character, my primary aim in approaching this issue is to remain realistic. I will make three claims. First, I will argue that the principles of autonomy, dignity and informed consent, embodied in the Oviedo Convention and the UNESCO Declaration on Bioethics and Human Rights, could arguably be regarded (...) as universal bases for the global use of advance directives. Second, I will demonstrate that, despite the apparent consensus of ethical authorities in support of their global use, it is unlikely, for the time being, that such consensus could lead to unqualified legal recognition of advance directives, because of different understandings of the nature of the international rules, meanings of autonomy and dignity which are context-specific and culture-specific, and existing imperfections that make advance directives either unworkable or hardly applicable in practice. The third claim suggests that the fact that the concept of the advance directive is not universally shared does not mean that it should not become so, but never as the only option in managing incompetent patients. A way to proceed is to prioritize work on developing higher standards in managing incompetent patients and on progressing towards the realization of universal human rights in the sphere of bioethics, by advocating a universal, legally binding international convention that would outlaw human rights violations in end-of-life decision-making. (shrink)

: In this paper, I consider objections to advance directives based on the claim that there is a discontinuity of interests, and of personal identity, between the time a person executes an advance directive and the time when the patient has become severely demented. Focusing narrowly on refusals of life-sustaining treatment for severely demented patients, I argue that acceptance of the psychological view of personal identity does not entail that treatment refusals should be overridden. Although severely demented patients are morally (...) considerable beings, and must be kept comfortable whilst alive, they no longer have an interest in receiving life-sustaining treatment. (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 begins with a discussion of persistent vegetative state (PVS), focusing on concerns related to both diagnosis and prognosis and paying special attention to the 1994 Multi-Society Task Force report on the medical aspects of PVS. The article explores the impact of diagnostic and prognostic uncertainties on prospective thinking regarding the possibility of PVS and considers the closely related question of how prospective thinkers might craft advance directives in order to deal most effectively with this possibility.

Background Japanese people have become increasingly interested in the expression and enhancement of their individual autonomy in medical decisions made regarding medical treatment at and toward the end of life. However, while many Western countries have implemented legislation that deals with patient autonomy in the case of terminal illness, no such legislation exists in Japan. The rationale for this research is based on the need to investigate patient's preferences regarding treatment at the end of life in order to re-evaluate advance (...) directives policy and practice. Methods We conducted a cross-sectional survey with 418 members of the general middle-aged and senior adults (aged between 40 and 65) in Tokyo, Japan. Respondents were asked about their attitudes toward advance directives, and preferences toward treatment options. Results Over 60% of respondents agreed that it is better to express their wishes regarding advance directives (treatment preferences in writing, appointment of proxy for care decision making, appointment of legal administrator of property, stating preferences regarding disposal of one's property and funeral arrangements) but less than 10% of them had already done so. About 60% of respondents in this study preferred to indicate treatment preferences in broad rather than concrete terms. Over 80% would like to decide treatment preferences in consultation with others (22.2% with their proxy, 11.0% with the doctor, and 47.8% with both their proxy and the doctor). Conclusion This study revealed that many Japanese people indicate an interest in undertaking advance directives. This study found that there is a range of preferences regarding how advance directives are undertaken, thus it is important to recognize that any processes put into place should allow flexibility in order to best respect patients' wishes and autonomy. (shrink)

: Debates on precedent autonomy and some forms of paternalistic interventions, which are related to questions of personal identity, are analyzed. The discussion is based on the distinction between personal identity as persistence and as biographical identity. It first is shown that categorical objections to advance directives and "Ulysses contracts" are based on false assumptions about personal identity that conflate persistence and biographical identity. Therefore, advance directives and "Ulysses contracts" are ethically acceptable tools for prolonging one's autonomy. The notions of (...) personality and biographical identity are used to analyze the ethically relevant features. Thereby, it is shown that these concepts are operative in and useful for thinking in biomedical ethics. The overall conclusion is that categorical arguments against precedent autonomy or "Ulysses contracts" are based on misleading theories of personal identity and that advance directives are an ethically respectable tool for prolonging individuals' autonomy in cases of dementia and mental illness. (shrink)

Who should decide? In When Doctors Say No, philosopher and bioethicist Rubin examines this controversial issue.

This article evaluates the potential role of advance directives outside of their original North American context. In order to do this, the article first analyses the historical process which has promoted advance directives in recent years. Next, it brings to light certain presuppositions which have given them force: atomistic individualism, contractualism, consumerism and entrepreneurialism, pluralism, proceduralism, and American moralism. The article next studies certain European cultural peculiarities which could affect advance directives: the importance of virtue versus rights, stoicism versus consumerist (...) utilitarianism, rationalism versus empiricism, statism versus citizens' initiative, and justice versus autonomy.The article concludes by recognising that autonomy has a transcultural value, although it must be balanced with other principles. Advance Directives can have a function in certain cases. But it does not seem adequate to delegate to advance directives more and more medical decisions, and to make them more binding everyday. It is indispensable to develop other decision-making criteria. (shrink)

This paper discusses (in German) an idea enshrined in the recent (2012) revision of the German transplantation law. The law allows family members to make claims about what the deceased would have wanted to happen to his/her organs/tissue even though he/she never has voiced any relevant opinions. I argue that this is illegitimate.

This article highlights the often overlooked fact that doctors who respect a bereaved family's veto of a deceased patient's organ donation are complicit in the deaths of those who would have benefited from the organs in question. Respecting the veto violates the dying wish of the patient, is against the spirit of the law and contributes to the deaths of other patients.

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. (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)

Despite the wide and daunting array of cross-cultural obstacles that the formulation of a global policy on advance directives will clearly pose, the need is equally evident. Specifically, the expansion of medical services driven by medical tourism, just to name one important example, makes this issue urgently relevant. While ensuring consistency across national borders, a global policy will have the additional and perhaps even more important effect of increasing the use of advance directives in clinical settings and enhancing their effectiveness (...) within each country, regardless of where that country's state of the law currently stands. One cross-cultural issue that may represent a major obstacle in formulating, let alone applying, a global policy is whether patient autonomy as the underlying principle for the use of advance directives is a universal norm or a construct of western traditions that must be reconciled with alternative value systems that may place lesser significance on individual choice. A global policy, at a minimum, must emphasize respect for patient autonomy, provision of medical information, limits to the obligations for physicians, and portability. And though the development of a global policy will be no easy task, active engagement in close collaboration with the World Health Organization can make it possible. (shrink)

Advance directives typically have two defects. First, most advance directives fail to enable people to effectively avoid unwanted medical intervention. Second, most of them have the potential of ending your life in ways you never intended, years before you had to die.

Research Objective: This study focuses on ADs in the Netherlands and introduces a cross-cultural perspective by comparing it with other countries. Methods: A questionnaire was sent to a panel comprising 1621 people representative of the Dutch population. The response was 86%. Results: 95% of the respondents didn't have an AD, and 24% of these were not familiar with the idea of drawing up an AD. Most of those familiar with ADs knew about the Advanced Euthanasia Directive (AED, 64%). Both low (...) education and the presence of a religious conviction that plays an important role in one's life increase the chance of not wanting to draw up an AD. Also not having experienced a request for euthanasia from someone else, and the inconceivability of asking for euthanasia yourself, increase the chance of not wanting to draw up an AD. Discussion: This study shows that the subjects of palliative care and end-of-life-decision-making were very much dominated by the issue of euthanasia in the Netherlands. The AED was the best known AD; and factors that can be linked to euthanasia play an important role in whether or not people choose to draw up an AD. This differentiates the Netherlands from other countries and, when it comes to ADs, the global differences between countries and cultures are still so large that the highest possible goals, at this moment in time, are observing and possibly learning from other cultural settings. (shrink)

In this article, I consider whether the advance directive of a person in minimally conscious state ought to be adhered to when its prescriptions conflict with her current wishes. I argue that an advance directive can have moral significance after its issuer has succumbed to minimally conscious state. I also defend the view that the patient can still have a significant degree of autonomy. Consequently, I conclude that her advance directive ought not to be applied. Then I briefly assess whether (...) considerations pertaining to respecting the patient's autonomy could still require obedience to the desire expressed in her advance directive and arrive at a negative answer. (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)