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.

Authority without identity: defending advance directives via posthumous rights over one's body.

This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual's rights over that body can support the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify.

Do New Neuroimaging Findings Challenge the Ethical Basis of Advance Directives in Disorders of Consciousness?

Some authors have questioned the moral authority of advance directives (ADs) in cases in which it is not clear if the author of the AD is identical to the person to whom it later applies. This article focuses on the question of whether the latest results of neuroimaging studies have moral significance with regard to the moral authority of ADs in patients with disorders of consciousness (DOCs). Some neuroimaging findings could provide novel insights into the question of whether patients with DOCs exhibit sufficient psychological continuity to be ascribed diachronic personal identity. If those studies were to indicate that psychological continuity is present, they could justify the moral authority of ADs in patients with DOCs. This holds at least if respect for self-determination is considered as the foundation for the moral authority of ADs. The non-identity thesis in DOCs could no longer be applied, in line with clinical and social practice.

Withdrawal of life-sustaining therapy.

PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively. Discussions relating to the WLST in the pediatric population varies by institution and may vary by race, age, health insurance, diagnosis, and severity of illness. Completing advance directives prior to placement of life-sustaining treatments is not consistent practice. With the WLST, differences in perspectives exist between medical specialties, within one specialty at different levels of training, and in physicians' ethical and psychological responses to the WLST. The timing of WLST appears to be influenced by ICU strain and communication issues. Study outcomes differ regarding the functionally favorable survival of patients who have had WLST. Universal guidelines for the WLST may not address individual patient circumstances. SUMMARY: Discussions of end-of-life issues early in the course of a patient's health care will contribute to the healthcare team's understanding and respect of the patient's wishes. This article addresses the withdrawal of left ventricular assist devices; attending physicians and physicians in training perspectives of WLST; do physicians distinguish between withholding and WLST; the timing of WLST; guidelines for the process of WLST; and pediatrics and end-of-life decisions.

How Surrogates Decide: A Secondary Data Analysis of Decision-Making Principles Used by the Surrogates of Hospitalized Older Adults.

BACKGROUND: Many hospitalized adults do not have the capacity to make their own health care decisions and thus require a surrogate decision-maker. While the ethical standard suggests that decisions should focus on a patient's preferences, our study explores the principles that surrogates consider most important when making decisions for older hospitalized patients. OBJECTIVES: We sought to determine how frequently surrogate decision-makers prioritized patient preferences in decision-making and what factors may predict their doing so. DESIGN AND PARTICIPANTS: We performed a secondary data analysis of a study conducted at three local hospitals that surveyed surrogate decision-makers for hospitalized patients 65 years of age and older. MAIN MEASURES: Surrogates rated the importance of 16 decision-making principles and selected the one that was most important. We divided the surrogates into two groups: those who prioritized patient preferences and those who prioritized patient well-being. We analyzed the two groups for differences in knowledge of patient preferences, presence of advance directives, and psychological outcomes. KEY RESULTS: A total of 362 surrogates rated an average of six principles as being extremely important in decision-making; 77.8% of surrogates selected a patient well-being principle as the most important, whereas only 21.1% selected a patient preferences principle. Advance directives were more common to the patient preferences group than the patient well-being group (61.3% vs. 44.9%; 95% CI: 1.01-3.18; p = 0.04), whereas having conversations with the patient about their health care preferences was not a significant predictor of surrogate group identity (81.3% vs. 67.4%; 95% CI: 0.39-1.14; p = 0.14). We found no differences between the two groups regarding surrogate anxiety, depression, or decisional conflict. CONCLUSIONS: While surrogates considered many factors, they focused more often on patient well-being than on patient preferences, in contravention of our current ethical framework. Surrogates more commonly prioritized patient preferences if they had advance directives available to them.

The implausibility of response shifts in dementia patients.

Dementia patients may express wishes that do not conform to or contradict earlier expressed preferences. Our understanding of the difference between their prior preferences and current wishes has important consequences for the way we deal with advance directives. Some bioethicists and gerontologists have argued that dementia patients change because they undergo a 'response shift'. In this paper we question this assumption. We will show that proponents of the response shift use the term imprecisely and that response shift is not the right model to explain what happens to dementia patients. We propose a different explanation for the changed wishes of dementia patients and conclude that advance directives of dementia patients cannot be simply put aside.

Beyond competence: advance directives in dementia research.

Dementia is highly prevalent and incurable. The participation of dementia patients in clinical research is indispensable if we want to find an effective treatment for dementia. However, one of the primary challenges in dementia research is the patients' gradual loss of the capacity to consent. Patients with dementia are characterized by the fact that, at an earlier stage of their life, they were able to give their consent to participation in research. Therefore, the phase when patients are still competent to decide offers a valuable opportunity to authorize research, by using an advance research directive (ARD). Yet, the use of ARDs as an authorization for research participation remains controversial. In this paper we discuss the role of autonomous decision-making and the protection of incompetent research subjects. We will show why ARDs are a morally defensible basis for the inclusion of this population in biomedical research and that the use of ARDs is compatible with the protection of incompetent research subjects.

It's big surgery: preoperative expressions of risk, responsibility, and commitment to treatment after high-risk operations.

OBJECTIVE: To identify the processes, surgeons use to establish patient buy-in to postoperative treatments. BACKGROUND: Surgeons generally believe they confirm the patient's commitment to an operation and all ensuing postoperative care, before surgery. How surgeons get buy-in and whether patients participate in this agreement is unknown. METHODS: We used purposive sampling to identify 3 surgeons from different subspecialties who routinely perform high-risk operations at each of 3 distinct medical centers (Toronto, Ontario; Boston, Massachusetts; Madison, Wisconsin). We recorded preoperative conversations with 3 to 7 patients facing high-risk surgery with each surgeon (n = 48) and used content analysis to analyze each preoperative conversation inductively. RESULTS: Surgeons conveyed the gravity of high-risk operations to patients by emphasizing the operation is "big surgery" and that a decision to proceed invoked a serious commitment for both the surgeon and the patient. Surgeons were frank about the potential for serious complications and the need for intensive care. They rarely discussed the use of prolonged life-supporting treatment, and patients' questions were primarily confined to logistic or technical concerns. Surgeons regularly proceeded through the conversation in a manner that suggested they believed buy-in was achieved, but this agreement was rarely forged explicitly. CONCLUSIONS: Surgeons who perform high-risk operations communicate the risks of surgery and express their commitment to the patient's survival. However, they rarely discuss prolonged life-supporting treatments explicitly and patients do not discuss their preferences. It is not possible to determine patients' desires for prolonged postoperative life support on the basis of these preoperative conversations alone.

Advance directives, dementia, and withholding food and water by mouth.

People with dementia who are no longer competent have limited control over how their lives end. But an advance directive to withhold food and water by mouth could be used to ensure that one does not live for years in severe dementia. Such directives are arguably already legal.

Continuing education in ethical decision making using case studies from medical social work.

Medical social workers have needs for training in ethics that is specific to dilemmas that arise while providing service to patients who are very ill, mentally compromised, or in a terminal condition. A social work department developed a continuing education training to educate social workers in bioethics related to determining decisional capacity and understanding standards of ethical decision making. Case studies are used to illustrate ethical conflicts and the role of social workers in resolving them. The benefits of case study training are discussed.

Descendants and advance directives.

Some of the concerns that have been raised in connection to the use of advance directives are of the epistemic variety. Such concerns highlight the possibility that adhering to an advance directive may conflict with what the author of the directive actually wants (or would want) at the time of treatment. However, at least one objection to the employment of advance directives is metaphysical in nature. The objection to be discussed here, first formulated by Rebecca Dresser and labeled by Allen Buchanan as the slavery argument and David DeGrazia the someone else problem, aims to undermine the legitimacy of certain uses of advance directives by concluding that such uses rest upon an incorrect assumption about the identity over time of those ostensibly governed by the directives. There have been numerous attempts to respond to this objection. This paper aims to assess two strategies that have been pursued to cope with the problem.

Advance directives and personal identity: what is the problem?

The personal identity problem expresses the worry that due to disrupted psychological continuity, one person's advance directive could be used to determine the care of a different person. Even ethicists, who strongly question the possibility of the scenario depicted by the proponents of the personal identity problem, often consider it to be a very potent objection to the use of advance directives. Aiming to question this assumption, I, in this paper, discuss the personal identity problem's relevance to the moral force of advance directives. By putting the personal identity argument in relation to two different normative frameworks, I aim to show that whether or not the personal identity problem is relevant to the moral force of advance directives, and further, in what way it is relevant, depends entirely on what normative reasons we have for respecting advance directives in the first place.

[Advance directives in patients with mental disorders. Scope, prerequisites for validity, and clinical implementation]. / Patientenverfügungen von Menschen mit psychischen Störungen. Gültigkeit, Reichweite, Wirksamkeitsvoraussetzung und klinische Umsetzung.

Since 1 September 2009, advance directives are regulated by law in Germany. This article discusses ethical challenges of advance directives in patients with mental disorders. Besides concrete information on the preferred medical treatment in concrete clinical situations, the mental capacity of the patient at the time of issuing the directive is essential. The "Decisional Competence Assessment Tool for Psychiatric Advance Directives" and empirical studies from the USA on advance directives in patients with mental disorders and the assessment by the treating psychiatrists of these patient directives are discussed. Ethical conclusions are drawn for handling advance directives in psychiatric practice.

Respect for other selves.

Philosophers have mostly advocated that advance directives should bear the same authority, with regard to refusal of life-extending treatment, as a patient's contemporaneous consent or refusal. Such authors typically support this position through a theory of persistent personal identity. I agree that the loss of mental competence does not render someone a moral stranger to their prior goal but argue that equating advance direction with consent is to ignore the capacity of nonpersons to attribute and withhold moral value. A distinction should be drawn between advance directives that seek to pursue deeply held goals and those that express contempt for the mentally incompetent.

Exemplary cases in clinical ethics: commentary on the case of Mr. A.

A commentary on a case of a man who is left a "high quad" (ventilator dependant as well as quadriplegic) after an accident discusses the following: The right of patients who sustain catastrophic injuries to choose to discontinue life-sustaining treatment, The role of capacity assessment in treatment decisions and in ethics consultations, The role of advance directives (ADs) for such patients if they lack capacity, Whether a do-not-resuscitate or do-not-attempt-resuscitation order should be seen as "a medical order" or an advance directive, Some hints about what might be intended when a patient refers to the criterion of having a "meaningful life."

Clinical ethics case report: questionable capacity and the guidance of living wills.

After falling from a roof, an older man lost neurological function below his face. In two days, the patient regained consciousness, but it was unclear whether he could communicate his preferences, whether due to injuries or difficulties with language. His family believed he could communicate with them, and that he was capable of making treatment decisions. The staff did not think to contact the hospital's largely inactive ethics consultation service for assistance, and instead looked to the patient's living will for guidance, even though the patient was not terminally ill, and his lack of capacity had not been determined.

Surgical "buy-in": the contractual relationship between surgeons and patients that influences decisions regarding life-supporting therapy.

OBJECTIVE: There is a general consensus by intensivists and nonsurgical providers that surgeons hesitate to withdraw life-sustaining therapy on their operative patients despite a patient's or surrogate's request to do so. The objective of this study was to examine the culture and practice of surgeons to assess attitudes and concerns regarding advance directives for their patients who have high-risk surgical procedures. DESIGN: A qualitative investigation using one-on-one, in-person interviews with open-ended questions about the use of advance directives during perioperative planning. Consensus coding was performed using a grounded theory approach. Data accrual continued until theoretical saturation was achieved. Modeling identified themes and trends, ensuring maximal fit and faithful data representation. SETTING: Surgical practices in Madison and Milwaukee, WI. SUBJECTS: Physicians involved in the performance of high-risk surgical procedures. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We describe the concept of surgical "buy-in," a complex process by which surgeons negotiate with patients a commitment to postoperative care before undertaking high-risk surgical procedures. Surgeons describe seeking a commitment from the patient to abide by prescribed postoperative care, "This is a package deal, this is what this operation entails," or a specific number of postoperative days, "I will contract with them and say, 'look, if we are going to do this, I am going to need 30 days to get you through this operation.'" "Buy-in" is grounded in a surgeon's strong sense of responsibility for surgical outcomes and can lead to surgeon unwillingness to operate or surgeon reticence to withdraw life-sustaining therapy postoperatively. If negotiations regarding life-sustaining interventions result in treatment limitation, a surgeon may shift responsibility for unanticipated outcomes to the patient. CONCLUSIONS: A complicated relationship exists between the surgeon and patient that begins in the preoperative setting. It reflects a bidirectional contract that is assumed by the surgeon with distinct implications and consequences for surgeon behavior and patient care.

Advance directives in dementia: issues of validity and effectiveness.

BACKGROUND: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia. METHODS: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care. RESULTS: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research. CONCLUSIONS: Ethics and actual practice are two "different worlds" when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when non-treatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended.

Are DCD donors dead?

Donation after cardiac death protocols are subject to two constraints. The first is that organ removal must occur as soon as possible after cardiac arrest. The second is that it must not occur so soon that the donor is not yet dead. Can both constraints be satisfied at once? DCD protocols are widely accepted, so arguments for them have apparently been persuasive. But this does not mean they are sound.