Most patients suffering from progressive dementia have thoughts, emotions, perspectives, and perceptions of a world of experience. Decisions about life‐sustaining treatment should incorporate a principled approach to evaluating what life is like for these patients.

In a pluralistic society, the “best interests” standard is an inadequate criterion for determining what level of medical care to provide incompetent patients. Instead, the standard of care should be derived from the deliberations of particular communities. A “community‐federated” plan would enhance individual choice and diminish family and physician uncertainty.

Background: In Quebec, medical aid in dying (MAiD) is legal under certain conditions. Access is currently restricted to patients who are able to consent at the time of the act, which excludes most people with dementia at an advanced stage. However, recent legislative and political developments have opened the door to an extension of the legislation that could give them access to MAiD. Our study aimed to explore the attitudes of people with early-stage dementia toward MAiD should it become (...) accessible to them. Methods: We used a qualitative descriptive design consisting of eight face-to-face semi-structured interviews with persons living with early-stage Alzheimer’s disease, followed by a thematic analysis of the contents of the interviews. Results and Interpretations: Analysis revealed three main themes: 1) favourable to MAiD; 2) avoiding advanced dementia; and 3) disposition to request MAiD. Most participants anticipated dementia to be a painful experience. The main reasons for supporting MAiD were to avoid cognitive loss, dependence on others for their basic needs, and suffering for both themselves and their loved ones. Every participant said that they would ask for MAiD at some point should it become available to incompetent patients and most wished that it would be legal to access it through a request written before losing capacity. Conclusion: The reasons for which persons with Alzheimer’s disease want MAiD are related to the particular trajectory of the disease. Any policy to extend MAiD to incompetent patients should take their perspective into account. (shrink)

ZusammenfassungIm Gesetzentwurf des Bundesrates zur Änderung des Betreuungsrechts ist eine regelhafte Stellvertretung durch Angehörige für zur Entscheidung unfähige Patienten vorgesehen. Mithilfe eines strukturierten Fragebogens wurden die Einstellungen von Tumorpatienten, gesunden Kontrollpersonen, Pflegenden und Ärzten zur Präferenz der zu bevollmächtigenden Personen ermittelt. Nur 10–20% der Befragten haben eine Patientenverfügung verfasst. Als Entscheidungbefugte im Falle akuter Erkrankung werden Angehörige und Ärzte gemeinsam genannt. Als Gesundheitsbevollmächtigte werden Ehepartner/lebenspartner bevorzugt und nichtangehörige Personen nur von einer Minderheit genannt. Die grundsätzliche Bereitschaft, als Gesundheitsbevollmächtigte Verantwortung zu (...) übernehmen, ist hoch, erstreckt sich jedoch überwiegend auf Angehörige. Nur Ärzte sind in bis zu 50% auch für nichtangehörige Personen bereit, als Bevollmächtigte zu entscheiden. Die regelhafte Stellvertretung in Gesundheitsfragen durch Angehörige entspricht den Wünschen der Mehrheit von Tumorpatienten, gesunden Vergleichspersonen und medizinischem Personal. (shrink)

In der neueren deutschen Rechtsprechung wurden die Anforderungen an die rechtliche Zulässigkeit von Zwangsbehandlungen verschärft und der Berücksichtigung des natürlichen Willens nicht selbstbestimmungsfähiger Patienten ein höherer Stellenwert eingeräumt. So ist der behandelnde Arzt etwa verpflichtet, einen letzten Versuch zu unternehmen, eine auf Vertrauen gegründete Zustimmung zu erhalten. In Anbetracht dessen, dass ein solches Gespräch im Kontext informellen Zwangs stattfindet, ergibt sich ein medizinethisches Dilemma: Entweder wird eine Zwangsbehandlung durchgeführt und somit direkter körperlicher Zwang angewendet, oder eine Zustimmung wird erzielt, jedoch (...) gegebenenfalls um den Preis, dass informeller Zwang – z. B. in Form einer Drohung, Täuschung oder Manipulation – ausgeübt wird. Es wird dafür argumentiert, dass die Antwort auf dieses Problem im philosophischen Begriff der Anerkennung zu finden ist, der im vorliegenden Kontext als eine spezifische Haltung aufgefasst wird und sich in einem respektvollen Umgang des Klinikpersonals mit den betroffenen Patienten zeigt. Die Ausübung von (informellem) Zwang ist in solchen Fällen kaum zu vermeiden. Dennoch kann man in dieser Situation besser oder schlechter mit dem Patienten umgehen – und besser heißt hier, dem Patienten Anerkennung entgegenbringen. (shrink)

This paper evaluates the Hong Kong approach to consent regarding the forgoing of life-sustaining treatment for incompetent elderly patients. It analyzes the contextualized approach in the Hong Kong process-based, consensus-building model, in contrast to other role-based models which emphasize the establishment of a system of formal laws and a clear locus of decisional authority.Without embracing relativism, the paper argues that the Hong Kong model offers an instructive example of how strategic ambiguities can both make good sense within particular (...) cultural context and serve important moral goals. (shrink)

Physicians are practicing in an age of cognitive dissonance, doing much for fragile elderly patients in the short run, even if there is little they can do in the long run. In such a setting, how can one determine what counts as good care?

In the literature three mechanisms are commonly distinguished to make decisions about the care of incompetent patients: A living will, a substituted judgment by a surrogate, and a best interest judgment. Almost universally, the third mechanism is deemed the worst possible of the three, to be invoked only when the former two are unavailable. In this article, I argue in favor of best interest judgments. The evermore common aversion of best interest judgments entails a risk that health care (...) providers withdraw from the decision-making process, abandoning patients to these most difficult of decisions about life and death. My approach in this article is primarily negative, that is, I criticize the alleged superiority of the living will and substituted judgment. The latter two mechanisms gain their alleged superiority because they are supposedly morally neutral, whereas the best interest judgment entails a value judgment on behalf of the patient. I argue that on closer inspection living wills and substituted judgments are not morally neutral; indeed, they generally rely on best interest judgments, even if those are not made explicit. (shrink)

Pickering et al. argue that patients who refuse doctor-recommended treatments should in some cases be deemed incompetent to decide about their own medical care—in part because of their decis...

This chapter discusses the moral framework for surrogate decision-making for incompetent medical patients. The chapter focuses on the question of how we can respect the autonomy of those who are no longer competent to make such decisions. The standard counterfactual account of how to respect the autonomy of the incompetent is evaluated, along with accounts that ground respect for autonomy on the patient’s most recent desires and values (regardless of whether the patient still possesses those desires and (...) values) as well as accounts according to which only the current desires and values of the patient matter. Other issues discussed include whether questions of personal identity should affect decision-making for incompetent patients, whether a patient’s former desires and values factor in to the patient’s current well-being, and whether an incompetent patient’s “investment interests” should guide decisions on the patient’s behalf. (shrink)

Background: The concept of patient advocacy is still poorly understood and not clearly conceptualized. Therefore, there is a gap between the ideal of patient advocacy and the reality of practice. In order to increase nursing actions as a patient advocate, a comprehensive and clear definition of this concept is necessary. Research objective: This study aimed to offer a comprehensive and clear definition of patient advocacy. Research design: A total of 46 articles and 2 books published between 1850 and 2016 and (...) related to the concept of patient advocacy were selected from six databases and considered for concept analysis based on Rodgers’ evolutionary approach. Ethical considerations: This study was approved by the Research Ethics Committee of Tarbiat Modares University. Findings: The attributes of patient advocacy are safeguarding (track medical errors, and protecting patients from incompetency or misconduct of co-workers and other members of healthcare team), apprising (providing information about the patient’s diagnosis, treatment, and prognosis, suggesting alternatives of healthcare, and providing information about discharge program), valuing (maintaining self-control, enabling patients to make decisions freely, maintaining individualization and humanity, maintaining patient privacy, and acting in the patients’ values, culture, beliefs, and preferences), mediating (liaison between patients, families, and healthcare professionals, being patients’ voice, and communicate patient preferences and cultural values to members of the healthcare team), and championing social justice in the provision of healthcare (confronting inappropriate policies or rules in the healthcare system, identifying and correcting inequalities in delivery of health services, and facilitating access to community health services and health resources). Discussion and conclusion: The analysis of this concept can help to develop educational or managerial theories, design instruments for evaluating the performance of nurses in patient advocacy, develop strategies for enhancing patient advocacy, and improve the safety and quality of nursing care in the community and healthcare system. (shrink)

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, the decision that ought to be made for the incompetent patient is the decision the patient would have made, had he or she been competent. Although the merits of this standard have been extensively debated, some important issues have not been sufficiently explored. One fundamental problem is that the substituted judgment standard, as commonly formulated, is (...) indeterminate in content and thus offers the surrogate little or no guidance. What the standard does not specify is just how competent one should imagine the patient to be, and what else one ought to envision about the patient’s hypothetical outlook and the circumstances surrounding his or her decision making. The article discusses this problem of underdetermined decision conditions. (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)

Limitations on reproductive decision making, including forced sterilization and involuntary birth control, raise significant ethical challenges. In the United States, these issues are further complicated by a disturbing history of the abuse and victimization of vulnerable populations. One particularly fraught challenge is the risk of teratogenicity posed by moodstabilizing psychiatric medications in patients who are incapable of appreciating such dangers. Long-acting reversible contraception (LARC) offers an intervention to prevent pregnancy among individuals who receive such treatments, but at a cost (...) to their reproductive autonomy. This article examines the ethical issues involved in the use of involuntary LARC for patients on teratogenic psychiatric medications (TPMs) and argues that such an approach can only be justified as a last resort after a careful consideration of the alternatives and an assessment of potential risks and benefits. (shrink)

This chapter explores whether it is possible to treat incompetent persons paternalistically. What is often seen to be wrong about acting paternalistically towards others is that one is treating these others as if they cannot make their own decisions about their own good. So how should one think about situations where one must make decisions on behalf of people who indeed cannot make their own decisions about their own good – especially if these people are still to some extent (...) capable of expressing their desires and concerns about what happens to them? This is often the case in the medical setting, when a patient has lost decisional capacity or has not developed such a capacity in the first place. Focusing on the medical setting, this chapter argues that insofar as someone has the component elements of agency, they can be the target of unjustified paternalism. The chapter first explores the ways in which patients may lack decisional capacity and whether such patients nevertheless retain a sense of agency that can be disrespected. It then examines whether, on some plausible accounts of paternalism, what constitutes disrespect towards the competent constitutes a similar disrespect to the agential capacities of the incompetent. (shrink)

In order to protect patients against medical paternalism, patients have been granted the right to respect of their autonomy. This right is operationalized first and foremost through the phenomenon of informed consent. If the patient withholds consent, medical treatment, including life-saving treatment, may not be provided. However, there is one proviso: The patient must be competent to realize his autonomy and reach a decision about his own care that reflects that autonomy. Since one of the most important patient (...) rights hinges on the patient's competence, it is crucially important that patient decision making incompetence is clearly defined and can be diagnosed with the greatest possible degree of sensitivity and, even more important, specificity. Unfortunately, the reality is quite different. There is little consensus in the scientific literature and even less among clinicians and in the law as to what competence exactly means, let alone how it can be diagnosed reliably. And yet, patients are deemed incompetent on a daily basis, losing the right to respect of their autonomy. In this article, we set out to fill that hiatus by beginning at the very beginning, the literal meaning of the term competence. We suggest a generic definition of competence and derive four necessary conditions of competence. We then transpose this definition to the health care context and discuss patient decision making competence. (shrink)

There are substantial data establishing that surrogates are often mistaken in predicting what treatments incompetent patients would have wanted and that supplements such as advance directives have not resulted in significant improvements. Rid and Wendler’s Patient Preference Predictor (PPP) proposal will attempt to gather data about what similar patients would prefer in a variety of treatment choices. It accepts the usual goal of patient autonomy and the Substituted Judgment principle for surrogate decisions. I provide reasons for questioning (...) sole reliance on autonomy when surrogates, not patients, are deciding and for giving some independent weight to patient well-being. Moreover, that family members, typical surrogates, will know best what the patient if incompetent would have wanted is not the only reason why they are chosen. The more pressing problem is that the PPP would fail to remove the more serious mistakes that empirical psychology over the last few decades has shown to infect such decision making. (shrink)

This article illustrates the less-acknowledged social construction of the concept of ‘incompetency’ and draws attention to the moral concerns it raises in health care encounters in the south Indian city of Chennai. Based on data drawn from qualitative research, this study suggests that surgeons subjectively construct the idea of incompetency through their understanding of the perceived circumstantial characteristics of the patients and family members they serve. The findings indicate that surgeons often underestimate patients and family members’ capacity based (...) on constructed assessments, which leads to paternalistic practice. In this article, I illustrate how these assessments influence the surgeons’ practices and provide the moral and practical justifications for their actions. The constructed knowledge becomes a source for drawing normative justification for surgeons’ actions and, in conjunction with socially enforced power relationships, results in patients and family members to be on the receiving end of disrespectful attitudes. Based on the data analysis and by drawing on philosophical analysis, I emphasize the need to focus on ‘respect for persons,’ to rethink the framework of ‘capacity,’ and to practice respect in hospital settings. (shrink)

Extending literature on health information to entertainment television, we analyze the prostate cancer narrative presented in the police drama, NYPD Blue. We explain how the physician-patient interaction depicted on the show followed (and sometimes did not follow) the medical dialogue model. Findings reveal that the producers of this show advocate a more dialogic model of medical interaction. Portrayals of incompetent, ineffective physicians are contrasted with the superior, effective efforts of other physicians. The audience learns that a non-dialogic approach characterizes (...) “bad doctors,” while the dialogic method typifies “good doctors.” Likewise, medical professionals can use such texts to enhance physician-patient interaction. (shrink)

The specific problems of consent for the mentally incompetent are reviewed. Scientific research is essential to test the validity of present treatments and to develop new ones. The respective roles of the physician and the researcher have to be clearly defined. The vulnerability of psychiatric patients has to be taken into consideration in such a way that some research can be conducted. It is emphasised that the ethical restrictions for research, although highly justified and necessary, are in part (...) responsible for the relatively slow progress in the application of modern neurosciences to psychiatric diseases. (shrink)

This paper addresses the problem of ‘premature consent’. The term ‘premature consent’ denotes patient decisions that are: formulated prior to discussion with the appropriate healthcare professional ; based on information from unreliable sources ; and resolutely maintained despite the HCP having provided alternative reliable information. HCPs are not obliged to respect premature consent patients’ demands for unindicated treatments. But why? What is it that premature consent patients do or get wrong? Davis has argued that premature consent patients (...) are incompetent and misinformed. We argue that this view is not sustainable. A more plausible position asserts that premature consent threatens the integrity of the medical profession. We argue that this gives rise to a negative patient duty which premature consent patients fail to honour. We argue for a further positive duty of good faith engagement in shared decision-making. This implies willingness to potentially revise or justify one’s evaluative bases. Fundamentally, the problem with premature consent patients is that certain of their evaluative bases are not open to revision. They therefore fail in their duty to participate faithfully in the shared decision-making process. (shrink)

In Memory of Ed PellegrinoEuthanasia in Belgium is not limited to terminally ill patients. It may be applied to patients with chronic degenerative diseases. Currently, people in Belgium wish to make it possible to euthanize incompetent patients who suffer from dementia. This article explains the Belgian law and then explores arguments for and against euthanasia of patients with dementia. It probes the dementia paradox by elucidating Dworkin’s distinction between critical and experiential interests, arguing that at (...) the end-of-life this distinction is not clearcut. It argues against euthanasia for patients with dementia, for respecting patients’ humanity and for providing them with more care, compassion, and good doctoring. (shrink)