People use advance directives to express preferences that direct their future care when they lack decision-making capacity. One form of advance directive, a “dementia directive,” records preferences about living in various stages of dementia. This is important because many Americans want to avoid living with advanced progressive dementia. Unfortunately, traditional advance directives cannot dependably achieve this goal. In contrast, some dementia directives can achieve this goal, by directing cessation of manually assisted feeding and drinking.

While many dementia directives have been published, most have gaps and omissions that thwart the goal of avoiding extended intolerable life in advanced dementia. To overcome these problems, we formulated a new dementia directive. This article explains the value of this new directive. We proceed in six stages. First, we review the prevalence of advanced dementia. Second, we identify the disadvantages of another option for accomplishing the goal of not living into advanced dementia, preemptive VSED. Third, we distinguish notable court cases where dementia directives were unsuccessful. Fourth, we review nine prominent dementia directives, noting how the Northwest Justice Project’s Advance Directive for VSED remedies those shortcomings. Fifth, we review this directive’s legal status. Sixth, we articulate its ethical justification.

As increasing proportions of our global population age, transgender people are experiencing higher rates of dementia, and many are afraid to enter long-term care. Structural interventions such as advance directives may help mitigate fears around entering long-term care by managing specific anxieties that transgender people may have about dementia, loss of decision-making capacity, and discrimination in long-term care settings.

Euthanasia and physician-assisted suicide are common practice in the Netherlands. In response to increasing requests from patients to end their lives, physicians are finding themselves placed in particularly precarious situations because of advance directives written by patients suffering from severe dementia. In April 2020, the Supreme Court of the Netherlands issued two judgments in the so-called Dormicum case: a case involving the deliberate termination of the life of a 74-year-old woman suffering from advanced dementia by a geriatrician in a nursing home in The Hague. The judgment of the lower criminal court was upheld, but the sanction imposed by the appellate disciplinary court was quashed. In this paper, the author reviews the two Supreme Court rulings, argues that both are fundamentally flawed and raises questions as to what they mean for Dutch criminal law, physicians, and patients going forward.

Patients with disorders of consciousness after severe brain injury need surrogate decision makers to guide treatment decisions on their behalf. Formal guidelines for surrogate decisionmaking generally instruct decision makers to first appeal to a patient’s written advance directive, followed by making a substituted judgment of what the patient would have chosen, and lastly, to make decisions according to what seems to be in the patient’s best medical interests. Substituted judgment is preferable because it is taken to preserve patient autonomy, by using a patient’s past wishes and values to reconstruct what they would have chosen for themselves. In this paper, the author argues that for a certain population of patients, the standard interpretation of substituted judgment cannot ensure the preservation of patient autonomy. Patients with “covert awareness” may continue to have values and an authentic sense of self, which may differ from their past values and wishes. Accordingly, surrogate decision makers should make decisions based on how the patient is likely to experience their condition in the present, rather than their past wishes and values.

Respect for persons protects patients regarding their own healthcare decisions. Patient informed choice for altruism (PICA) is a proposed means for a fully autonomous patient with decisionmaking capacity to limit his or her own treatment for altruistic reasons. An altruistic decision could bond the patient with others at the end of life. We contend that PICA can also be an advance directive option. The proxy, family, and physicians must be reminded that a patient’s altruistic treatment refusal should be respected.

Documenting capacity assessments and identifying substitute decisionmakers (SDMs) in healthcare facilities is ethically required for optimal patient care. Lack of such documentation has the potential to generate confusion and contention among patients, their family members, and members of the healthcare team. An overview of our research at the Ottawa Hospital and issues that influence the consistency of documentation in the Canadian context are presented here, as well as ideas for the mitigation of these issues and ways to encourage better documentation.

Determining the appropriate intensity of investigation and treatment for individual elderly patients in long-term care settings can present a significant challenge to physicians, especially when patients are incompetent to decide for themselves. However, respecting established intervention levels may represent an even greater challenge, given the realities of coverage by on-call physicians. This paper describes a new Intervention Level Scale for competent as well as incompetent long-term care elderly, and its validation as a communication tool between attending and on-call physicians. Specifically studied were (a) concordance of interventions, (b) whether prior knowledge of an intervention level by an on-call physician was considered useful, (c) applicability of the scale in different institutions and (d) necessity of physician training for optimal use. The scale's uniqueness resides in the fact that it is based on personal values of life, rather than institutional resources, and it incorporates directives on family contact.

Objectives: The Mental Health Act 2001 was implemented in Ireland in 2006, however, within this new legislation there is no provision for compulsory community treatment or advance directives, which are now established practice in other countries. We aimed to determine the proportion of patients who believe that compulsory treatment may be justified, the preference for where the treatment should be delivered and factors which may influence this preference. We also sought to determine the proportion of people who would be interested in the option of having an advance directive in their future care plan.

Methods: Patients who had been admitted involuntarily in a 183 bedded psychiatric hospital in Dublin (St John of God Hospital) over a 15 month period were interviewed one year following discharge. A structured interview was used and included the Birchwood Insight Scale and Drug Attitude Inventory (DAI).

Results: Sixty-seven patients were interviewed, which resulted in a follow-up rate of 68%. A total of 56% of participants believe that there are situations in which involuntary treatment with medication may be justified. Of the participants 59% think that the person should be admitted to hospital if they are going to be administered medication without consent. A total of 41 % of participants stated they would have preferred to have been treated at home rather than hospital and this was associated with having a diagnosis of an affective disorder or it being their first involuntary admission. Of the participants 84% expressed interest in having the option of an advance directive in their treatment care plan.

Conclusions: With the increasing community based provision of mental health services in Ireland a debate on compulsory community treatment orders and advance directives needs to take place amongst all stakeholders.

Ethical issues can be more difficult to address in the emergency department than in other settings. We present two cases, with the goal of stimulating moral reflection and encouraging emergency physicians to gain a better understanding of two important ethical issues: advance directives and resource allocation decisions.

Understanding the legal and ethical basis for advance directives allows emergency physicians to determine when the directives should be followed and when they should be questioned. Resource allocation decisions are among the toughest decisions emergency physicians make. Although patients or substitute decision-makers define the value of a treatment goal, emergency physicians must ensure that this goal does indeed represent the patient’s wishes, that it is achievable, and that competing claims for the same resource are considered.

Learning from others’ experiences and preparing for ethical problems in advance will help physicians feel more comfortable in dealing with ethical issues.