Substituted Judgment Standard Research Articles

Hidden Fault Lines in the Bedrock: A Critical Examination of Surrogate Decision-Making Standards in Ethics Consultation.

AbstractClinical ethicists are routinely consulted in cases that involve conflicts and uncertainties related to surrogate decision-making for incapacitated patients. To navigate these cases, we invoke a canonical ethical-legal hierarchy of decision-making standards: the patient's known wishes, substituted judgment, and best interest. Despite the routine application of this hierarchy, however, critical scholarly literature alleges that these standards fail to capture patients' preferences and surrogates' behaviors. Moreover, the extent to which these critiques are incorporated into consultant practices is unclear. In this article I thus explore whether, and how, existing critiques of the hierarchy affect the application of these standards during ethics consults. After discussing four critiques of the hierarchy, I examine how two prominent published ethics consultation methodologies-bioethics mediation and CASES-incorporate these critiques differently. I then argue that while both methodologies explicitly endorse the same hierarchy, the varying degrees to which these four criticisms are incorporated into the prescribed consultation process could produce different applications of the same standard. I demonstrate with a case study how an ethics consultant following either methodology might produce two substantively different recommendations despite using the same substituted judgment standard. I conclude that while this heterogeneity of application should not dismantle the hierarchy's status as field-wide canon, it complicates projects of professional ethics consultation consensus building.

A Mixed Judgment Standard for Surrogate Decision-Making.

The Substituted Judgment Standard (SJS) for surrogate decision-making dictates that a surrogate, when making medical decisions on behalf of an incapacitated patient, ought to make the decision that the patient would have made if the patient had decisional capacity. Despite its intuitive appeal, however, SJS has been the target of a variety of criticisms. Most objections to SJS appeal to epistemic difficulties involved in determining what a patient would have decided in a given case. In this article, I offer an alternative standard for surrogate decision-making that avoids these difficulties. I then offer an account of its theoretical underpinnings which shows that it preserves the central moral justification for SJS, namely, respect for patient autonomy.

A mixed methods investigation of end-of-life surrogate decisions among older adults

BackgroundA large number of end-of-life decisions are made by a next-of-kin for a patient who has lost their decision-making capacity. This has given rise to investigations into how surrogates make these decisions. The experimental perspective has focused on examining how the decisions we make for others differ from our own, whereas the qualitative perspective has explored surrogate insights into making these decisions.MethodsWe conducted a mixed methods study to bring these two perspectives together. This is crucial to comparing decision outcomes to the decision process. We asked older adult partners to make end-of-life decisions for each other. They then took part in a semi-structured interview about their decision process. Transcripts were analysed using thematic analysis.Results24 participants took part in the study. Surrogates were more likely to take a life-saving treatment at the risk of a diminished quality of life for their partner than for themselves. This was consistent with their transcripts which showed that they wanted to give their partner a better chance of living. Although there was evidence of surrogate inaccuracy in the decision task, participants overwhelmingly reported their intention to make a decision which aligns with the substituted judgment standard. However, uncertainty about their wishes pushed them to consider other factors.ConclusionsTaking a mixed methods approach allowed us to make novel comparisons between decision outcome and process. We found that the intentions of surrogates broadly align with the expectations of the substituted judgment standard and that previous discussions with their partner helps them to make a decision.

On the Likelihood of Surrogates Conforming to the Substituted Judgment Standard When Making End-of-Life Decisions for Their Partner.

A considerable proportion of end-of-life decisions are made by the patient’s next-of-kin, who can be asked to follow the substituted judgment standard and decide based on the patient’s wishes. The question of whether these surrogate decision makers are actually able to do so has become an important issue. In this study, we examined how the likelihood of surrogates conforming to the substituted judgment standard varies with individual differences in mortality acceptance and confidence in their decision making. We recruited 153 participants in romantic relationships between 18 and 80 years old from the general population. We asked them to make hypothetical end-of-life decisions for themselves and on behalf of their partner, as well as predict what their partner would do, and complete a series of questionnaires. Participants predicted that their partner would make similar decisions to their own but were more likely to accept a life-saving treatment that could result in reduced quality of life on their partner’s behalf than for themselves. Decisions made by older adults were more likely to conform to the substituted judgment standard, which is encouraging given that they are more likely to be confronted with these decisions in real life, although this was not due to differences in mortality acceptance. Older adults were also more likely to have had previous discussions with their partner and thereby know that person’s wishes and feel confident that they made the right decision, but these factors did not affect their likelihood of conforming to the substituted judgment standard. This shows that encouraging discussions about end of life among families would ease the decision process, but more work is needed to ensure that surrogates can adhere to the substituted judgment standard.

Preserving fertility in an unconscious patient with Goodpasture syndrome\u2014medicolegal and ethical aspects

BackgroundEvery day in the ICU, legal issues arise while treating sedated, unconscious, and legally incapacitated patients. Whenever a life-saving treatment cannot be discussed in a timely manner with an unconscious patient, doctors are required by law to act according to the substituted judgment standard. However, if it is not survival that is at stake, but conservation of reproduction and the potential side effects are significant, the decision-making process becomes much more difficult. Legal issues associated with possible harm to the patient on the one hand and ethical issues with presumable benefit of the intervention on the other hand give rise to difficult decisions.Case presentationWe present the case of a 24-year-old patient with Goodpasture syndrome. Because of rapid aggravation of kidney function and alveolar hemorrhage—the latter requiring an urgent initiation of mechanical ventilation—therapy with steroids, plasmapheresis, and cyclophosphamide was immediately required. Knowledge of the negative impact on fertility brought up the question about sperm cryopreservation. According to the substituted judgment standard, together with the mother of the patient and based on interdisciplinary evaluation of the situation with specialists from the reproductive endocrinology and urology department, the decision for a testicular sperm extraction in the absence of the possibility to obtain the patient’s informed consent was made. Immediate chemotherapy was initiated and continued after the procedure. The patient recovered from the acute illness and was informed retrospectively about the testicular sperm extraction, which he received extremely positively.ConclusionOur aim is to highlight the legal objectives and ethical aspects of a non-lifesaving but fertility-preserving intervention in an unconscious patient. The need for decision-making in this kind of situation is rare and therefore challenging. The present case may serve to encourage and guide other doctors in similar situations.

Toward a Psychology of Surrogate Decision Making

In everyday life, many of the decisions that we make are made on behalf of other people. A growing body of research suggests that we often, but not always, make different decisions on behalf of other people than the other person would choose. This is problematic in the practical case of legally designated surrogate decision makers, who may not meet the substituted judgment standard. Here, we review evidence from studies of surrogate decision making and examine the extent to which surrogate decision making accurately predicts the recipient’s wishes, or if it is an incomplete or distorted application of the surrogate’s own decision-making processes. We find no existing domain-general model of surrogate decision making. We propose a framework by which surrogate decision making can be assessed and a novel domain-general theory as a unifying explanatory concept for surrogate decisions.

A narrative approach to the ethical dilemmas of surrogate decision making

Surrogate decisions for incapacitated patients are challenging. Surrogates may be unreliable in their prediction of patient preferences. The responsibilities of the surrogate decision maker may result in psychological harm and moral distress. The substituted judgment standard of surrogate responsibility has been questioned on both philosophical and practical grounds. This article explores the ethical challenges of the surrogate decision maker and offers a defense of the surrogate's moral standing. The bioethical principle of respect for autonomy is contrasted with the concept of authenticity. A medical case is used to focus attention on the complexities of the surrogate's role. The case discussion seeks to demonstrate how attention to narrative information, the concept of authenticity, as well as the principles of bioethics, can help support the surrogate and establish a foundation for ethical consensus.

Clarifying substituted judgement: the endorsed life approach

A primary goal of clinical practice is to respect patient autonomy. To promote this goal for patients who have lost the ability to make their own decisions, commentators recommend that...

Ethical Challenges in Evidence‐Based Management of an Elderly Adult with Cancer without Decision‐Making Capacity

To the Editor: WM, a 72-year-old Cuban-American Vietnam War veteran with a history of stroke with residual dysarthria, syphilis, hepatitis C, prostate cancer, schizophrenia, and advanced dementia, was admitted from a nursing home after being found on the floor, probably after an unwitnessed fall. Upon admission, he was febrile and tachycardic and had radiographic evidence of lobar pneumonia. Treatment with intravenous fluids and antibiotics was instituted. Hospital course was complicated by delirium and agitation, requiring use of restraints. A geriatrics consultation was sought to assist with management of delirium and to discuss goals of care. WM had emigrated from Cuba several decades before, was unmarried, had no family in the United States, and lived alone before nursing home admission 5 years before. There were no documented advance directives, nor could they be elicited at time of admission because of marked deficits in speech and cognition. In particular, when asked at the time of consultation, whether he knew of his diagnosis of prostate cancer, he responded, “No.” When asked about whom he trusted most in the world to make health-related decisions for him, he replied, “President Obama.” On examination, WM was a thin, unkempt gentleman who appeared older than his age and needed assistance with most activities of daily living. Four months before presentation, he had undergone a prostate biopsy to evaluate a prostate-specific antigen level of 60 ng/mL. Pathology revealed a Gleason 7, Stage IIB tumor; follow-up bone scan to exclude metastases was equivocal. Hormonal therapy with a gonadotropin-releasing hormone analogue was started 1 month later. Thereafter, he was considered for radiation therapy (RT) that had begun 1 week before presentation. An administrative decision was made to continue RT after he was stabilized. One month later, he was readmitted with subdural and subconjunctival hemorrhage and facial fractures resulting from another fall. During this admission, even as he was being considered for a percutaneous endoscopic gastrostomy tube, the geriatrics team strongly advised against any artificial nutrition or further RT. Finally, RT was stopped in light of the patient's “poor prognosis.” He lived at the nursing home for another 6 months. The American Urological Association recommends definitive therapy rather than active surveillance for localized high-risk cancer (Grade 2C),1 but observational data comparing the different therapeutic modalities are limited, particularly in older adults. For instance, the survival benefit of radical prostatectomy over watchful waiting in men with early-stage prostate cancer is confined to men younger than 65.2 This results in a lack of clear guidelines regarding the standard of care for elderly men with prostate cancer. Also, dementia reduces survival, and elderly adults with cancer and dementia have higher mortality from cancer and noncancer causes.3, 4 Moreover, there is evidence that functional dependence is a predictor of poor outcome in older adults with cancer.5 This individual had neither capacity nor any documented directives. The conundrum is around making a decision to deliver curative therapy to a young-old adult with clinically localized high-risk prostate cancer but who has considerable cognitive and functional deficits that may limit not only the success of therapy, but also the enjoyment of any prolonged life as a result of that therapy. Individual preference is an important aspect of evidence-based medicine that incorporates best available evidence with clinical experience.6 In the absence of decision-making capacity in critically ill individuals, physicians generally resort to the surrogate decision-making process to assist in directing care, especially at the end of life. This begins with review of advance directives if any and discussion with family members and healthcare proxies. In the absence of these directives, the Substituted Judgment standard is used, wherein the decision-maker must have a clear and detailed understanding of the individual's values, preferences, and thoughts regarding health care and end of life.7 When even this is not possible, the Best Interests standard is considered appropriate and legal. This involves the application of the principle of beneficence and attempts to weigh the potential burdens and benefits of treatment for this individual in this particular situation.8 The President's Council on Bioethics professes that incapacitated adults should receive best available care yet clarifies this may not always extend biological life and advocates careful attention to comfort care and pain management. In conclusion, this case highlights the clinical and ethical dilemma for physicians treating elderly adults without decision-making capacity. Greater participation of older adults in clinical trials to improve the quality of evidence and greater understanding of ethical principles by physicians treating older adults are vital. Conflict of Interest: None. Author Contributions: R. Ramaswamy is solely responsible for concept and design, analysis and interpretation, and preparation of the manuscript. Sponsor's Role: There was no sponsor for this letter.

End-of-Life Decision Making in the Intensive Care Unit

Increasingly in the United States and other countries, medical decisions, including those at the end of life, are made using a shared decision-making model. Under this model, physicians and other clinicians help patients clarify their values and reach consensus about treatment courses consistent with them. Because most critically ill patients are decisionally impaired, family members and other surrogates must make end-of-life decisions for them, ideally in accord with a substituted judgment standard. Physicians generally make decisions for patients who lack families or other surrogates and have no advance directives, based on a best interests standard and occasionally in consultation with other physicians or with review by a hospital ethics committee. End-of-life decisions for patients with surrogates usually are made at family conferences, the functioning of which can be improved by several methods that have been demonstrated to improve communications. Facilitative ethics consultations can be helpful in resolving conflicts when physicians and families disagree in end-of-life decisions. Ethics committees actually are allowed to make such decisions in one state when disagreements cannot be resolved otherwise.

An Ethical Façade? Medical Students' Miscomprehensions of Substituted Judgment

BackgroundWe studied how well first-year medical students understand and apply the concept of substituted judgment, following a course on clinical ethics.MethodStudents submitted essays on one of three ethically controversial scenarios presented in class. One scenario involved a patient who had lost decisional capacity. Through an iterative process of textual analysis, the essays were studied and coded for patterns in the ways students misunderstood or misapplied the principle of substituted judgment.ResultsStudents correctly articulated course principles regarding patient autonomy, substituted judgment, and non-imposition of physician values. However, students showed misunderstanding by giving doctors the responsibility of balancing the interests of the patient against the interests of the family, by stating doctors and surrogates should be guided primarily by a best-interest standard, and by suggesting that patient autonomy becomes the guiding principle only when patients can no longer express their wishes.ConclusionStudents did not appear to internalize or correctly apply the substituted judgment standard, even though they could describe it accurately. This suggests the substituted judgment standard may run counter to students' moral intuitions, making it harder to apply in clinical practice.

Substituting Authenticity for Autonomy

Choosing for incapacitated patients is a major challenge in medicine. Scholars and policy-makers have struggled for years to explain and justify various approaches to determining appropriate treatment for such patients. In this issue, Daniel Brudney makes an important contribution by clarifying a conceptual confusion in the common understanding of the substituted judgment standard. He argues that unlike decisions expressed in advance directives, decisions based on what the patient would want fail to promote self-determination. Instead, they promote authenticity. Brudney is not the first to delineate conceptual and ethical differences between treatment choices in advance directives and choices inferred from an incapacitated patient’s previous beliefs and values. The differences explain why ethical theorists and legal authorities give priority to advance directives over the substituted judgment standard. Brudney’s contribution is a novel account of why inferred treatment choices are distinct from choices expressed by patients themselves. Brudney also questions the conventional view that decisions based on substituted judgment should invariably take priority over those based on a patient’s best interests. Unlike self-determination, authenticity is a value that might be subordinated to other considerations. Brudney ties the value of authenticity to Ronald Dworkin’s notion of integrity and the wish for one’s life to have a coherent narrative. Individuals have an interest in receiving medical care that is consistent with their beliefs and values, but this is only one of several factors that determine an incapacitated patient’s best interests. On Brudney’s analysis, decision-making for patients with no advance directive may require balancing several different values, including authenticity, other elements of the patient’s best interests, and perhaps even the family’s interests. I would extend Brudney’s analysis further than he does. Though acknowledging that “even explicit statements may need interpretation,” Brudney classifies the choices expressed in advance directives as actual expressions of self-determination that should trump the other values that might influence bedside choices. But this element of his analysis conflates two types of choices that should be distinguished. In the medical setting, the paradigm case for an exercise of self-determination is the competent patient making an informed choice among different treatment options. Informed choice requires an understanding of the proposed intervention, its risks and expected benefits, and the risks and expected benefits of any reasonable alternatives. When patients lack this understanding, they cannot exercise genuine self-determination. Before losing capacity, few individuals know what treatment decisions will later emerge, much less how they would experience the relevant burdens and benefits in their incapacitated state. As a result, few advance directives are made with the understanding that underlies genuine self-determination. There are also other reasons to regard most advance directives as less than full-fledged exercises of self-determination. For one, individual beliefs and preferences change over time. It is not unusual for people in declining health to become more accepting of burdens that previously seemed unacceptable, or conversely, to reject burdens they once thought would be tolerable. Psychologists are finding that we are not very good at predicting what will be good or bad for us in the future. It is also difficult to put what are often complex ideas about quality of life and survival into simple declarations. And many advance directives are simply general statements about a person’s values and beliefs; as such, they supply no more guidance than the evidence supporting a treatment decision based on substituted judgment.

Turning failures into successes: a methodological shortcoming in empirical research on surrogate accuracy

Decision making for incompetent patients is a much-discussed topic in bioethics. According to one influential decision making standard, the substituted judgment standard, a surrogate decision maker ought to make the decision that the incompetent patient would have made, had he or she been competent. Empirical research has been conducted in order to find out whether surrogate decision makers are sufficiently good at doing their job, as this is defined by the substituted judgment standard. This research investigates to what extent surrogates are able to predict what the patient would have preferred in the relevant circumstances. In this paper we address a methodological shortcoming evident in a significant number of studies. The mistake consists in categorizing responses that only express uncertainty as predictions that the patient would be positive to treatment, on the grounds that the clinical default is to provide treatment unless it is refused. We argue that this practice is based on confusion and that it risks damaging the research on surrogate accuracy.

“What the patient would have decided”: A fundamental problem with the substituted judgment standard

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.

Schiavo's Legacy: The Need for an Objective Standard

Like many who teach and write about bioethics, I was startled by the intense national interest in the case of Terri Schiavo. Her medical situation closely resembled that of Karen Ann Quinlan, Nancy Cruzan, and other patients, and for people familiar with end of life topics, the issues seemed settled. There were established rules and principles to guide the case toward a resolution. But perhaps the public response was not so surprising. Over the past three decades, clinicians and legal authorities have constructed a basic approach to treatment decisions for incapacitated patients, but as the passions this latest case unleashed suggest, this approach is both unfinished and vulnerable to challenge. Schiavo exposed weaknesses and gaps that demand our attention. The good news is that Schiavo provoked discussions about medicine's limits. For a while, end of life issues replaced the usual preoccupation with miracle cures from cutting edge science. Families and friends debated their views, and people learned a little about what their medical futures might be like. The bad news is that the case became a vehicle for promoting political agendas. Deficiencies in the framework that governs decisions on behalf of incapacitated patients left the Florida court rulings open to criticism. Yet Another Campaign for Living Wills As in every end of life case that hits the headlines, people disturbed by the treatment conflict over Terri Schiavo advised living wills as the remedy. In fact, the importance of having a living will became the main take-home message of this conflict. Unfortunately, living wills are an ineffective remedy. Anyone familiar with the literature is well aware of their shortcomings, cogently summarized last year in the Hastings Center Report by Carl Schneider and Angie Fagerlin. The commentary on the Schiavo case undoubtedly prompted many people to register their wishes to refuse or receive various medical interventions at some future point, but the empirical evidence indicates that they did not necessarily understand what they were choosing and that the forms and statements will supply limited guidance at the bedside. If history is any guide, patients with living wills will remain in the minority. Living wills have been promoted since the 1970s, with an especially big push fifteen years ago, when Congress last weighed in on end of life decisionmaking and passed legislation designed to encourage them. Yet despite these efforts, the documents have yet to become a major factor in decisions at the bedside. Doubts about Substituted Judgment Since Terri Schiavo had no living will, the Florida judges applied the standard to reach a decision about her care. This standard aims to produce the decision the patient would make if able. The evidence adduced to gauge what that decision would be includes the individual's informal remarks, her religious and cultural background, and whatever is known about her attitudes toward medical care. The courts found that Ms. Schiavo's former statements constituted clear and convincing evidence that she would refuse the medical nutrition and hydration prolonging her life. Yet the courts also recognized that the evidence was not all that strong. One of the judges on the Florida Appeals Court commented on this in 2001: The testimony in this case establishes that Theresa was very young and very healthy when this tragedy struck. Like many young people without children, she had not prepared a will, much less a living will. She had been raised in the Catholic faith, but did not regularly attend mass or have a religious advisor who could assist the court in weighing her religious attitudes about life-support methods. Her statements to her friends and family about the dying process were few and they were oral. Much of the opposition to the Florida court rulings was built on weaknesses in the substituted judgment standard. …

Assisted and Surrogate Decision Making for Pregnant Patients Who Have Schizophrenia

Because of a dearth of literature, we developed preventive ethics strategies for managing the pregnancies of patients with schizophrenia. Schizophrenia can chronically and variably impair a woman's decisions concerning the management of pregnancy, including the decision about whether to continue the pregnancy through to viability and term. The psychiatrist must balance autonomy-based and beneficence-based obligations to the pregnant woman with schizophrenia, and both the psychiatrist and pregnant woman have beneficence-based obligations to the fetus when the fetus is a patient. We discuss the assessment of the decision-making capacity of pregnant patients with schizophrenia and describe the strategies of assisted decision making that aim to diminish chronically and variably impaired autonomy. When patients are severely impaired in decision-making capacity, as, for example, in psychotic denial of pregnancy, the standard of surrogate decision making applies. This should be guided by the substituted judgment standard. When patients' values are not known or have not been consistently held over time, surrogate decision making should be guided by the best interests standard. These strategies should substantially enhance patients' autonomy in the psychiatrist-patient relationship and contribute to the quality of their psychiatric and obstetric care.

末期病人的決策倫理: 三個模式的比較

LANGUAGE NOTE | Document text in Chinese; abstract also in English.本文討論末期病人的決策過程的三個模式，即個人主義、家長主義和家庭本位主義。個人主義過份偏重病人的抉擇，家長主義只強調從專業角度照顧病人的個人最佳利益，這兩個模式均會令家庭角色邊緣化。本丈認為家庭本位主義，更符合東方社會文化，從倫理角度來看亦較其他兩個模式可取。This paper critically examines the liberal, the medical paternalist, and the familial models of decision making for the terminally ill. It is argued that the liberal model is excessively patient centered while the medical paternalist model overemphasizes the role of the physician. The paper concludes that since both models marginalize the role of the family in the decision-making process, they are morally inadequate and not suitable for societies with strong family ethics, particularly those in Asia.The liberal model is predominant in the United States. According to this model, a competent patient can express in an advance directive her prior wish of how she is to be treated when she lapses into incompetency. In the absence of an advance directive or in cases where the directive is vague or ambiguous, the surrogate decision-making process will be invoked, which is normally a procedure in which the family makes the decision on the patient's behalf. In this process, the family serves to assist the incompetent patient to exercise her self-determination by figuring out and then following her counterfactual choice in accordance with the substituted judgment standard. If it is impossible to arrive at a decision by following this standard, the family, with the assistance of the physician, will follow the standard of best interests to promote the well-being of the patient. In sum, in the process of surrogate decision making, only the individual choice and interests of the patient are a matter of concern. Thus, the liberal model is entirely patient-centered. The role of the family is marginalized in the sense of being subordinated to the (previous or counterfactual) choice and interests of the patient. The family therefore becomes a "shadow" of the patient with no independent status and is deprived of its self-sufficiency.In the United Kingdom, medical paternalism is more influential. There is a preference for a code of practice to legislation for advance directives, and the prevalence of the best interest standard. Yet, unlike the liberal model, the best interests of the patient are not determined by the family in accordance with the standard of a reasonable person. Rather the doctor is expected to make decision for the patient in accordance with a responsible and competent body of relevant professional opinion in determining the patient's best interests. Though the family will often be consulted, the principal decision maker is the physician. So the role of the family is also marginal in this model.In Asian societies, e.g., Japan, Mainland China and Hong Kong, the family plays a fundamental role in the decision making for the terminally ill, so the model of familialism prevails. In these societies, it is common that the patient will not be informed directly of her terminal illness by the physician. The decision for the incompetent patient is regarded not as an individual but a family decision, and the dying process is viewed a sharing process, the last journey that the patient undergoes together with her significant others.In the familial model, the decision for a terminally ill patient is regarded not entirely as an individual matter because other members will be affected by the patient's choice. Should a son merely consider the wishes or the best interests of his father without considering the burden of care and the feelings of his mother while his father is going through the last stage of his life? Should the mother also consider the financial burden that her son might have to bear for his father if he were to be kept alive at all costs? Such issues would not have a place in the liberal and the medical paternalist models, for what matters is only the choice or the best interests of the patient. On the contrary, due considerations are given to these issues in the familial model, which makes it more plausible than the other two models.DOWNLOAD HISTORY | This article has been downloaded 15 times in Digital Commons before migrating into this platform.

Influence of a Values Discussion on Congruence Between Elderly Women and Their Families on Critical Health Care Decisions

ABSTRACT This study investigated if prior discussion of values by competent older women (N = 60) with their proxies assisted these proxies to make critical health care decisions in congruence with the desires of the women. Women were randomly assigned to experimental or control groups. Experimental treatment consisted of discussion of value indicators in the presence of their proxies. The proxies were instructed to make decisions in 10 situations across 3 mental states using the substituted judgment standard. The experimental group did not have statistically higher agreement than women-proxy pairs in the control group in 27 of the 30 situations, but they had greater percentage agreement in 11 of the situations. Limitations of the Kappa statistic in health care agreement studies were addressed. The mean treatment decision scores were significantly different across mental states, indicating as mental acuity was decreased in the scenarios, the women were more likely to refuse the recommended treatment.

Life‐Sustaining Treatment Decisions by Spouses of Patients with Alzheimer's Disease

To examine the anticipated decisions to consent to or to forgo life-sustaining treatment by spouses of patients with Alzheimer's disease and to describe the relationship of spouse and patient characteristics to predicted decisions. Prospective quantitative study. The Aging and Dementia Research Center (ADRC), part of an Alzheimer's Disease Center Core Grant, at New York University Medical Center. Fifty spouse caregivers of Alzheimer's disease patients, evaluated at the ADRC, who had a minimum Stage 4 on the Global Deterioration Scale. Spouses were presented with two conditions (critical illness and irreversible coma) and rated their agreement with, certainty of, and comfort with four treatments (resuscitation, breathing machine, feeding tube, and antibiotics). Data were also obtained as to patients' current quality of life, spouses' standard of decision-making, and spouse burden. Eighteen of 50 patients had a durable power of attorney for health care, 20 of 50 had a living will, and 26 of 50 had neither. In the face of critical illness, almost equal numbers of spouses would consent to or forgo CPR, 28 of 50 would forgo a breathing machine, 21 of 50 a would forgo a feeding tube, and 5 of 50 would forgo antibiotics. Five of 50 would forgo all four treatments, and 12 of 50 all but antibiotics. Spouses were significantly more likely to forgo treatment in the face of coma than for critical illness (P < .001). Spouses were more certain about decisions related to coma than to critical illness (P < .001), and there was a positive and significant correlation between certainty and comfort (P = .001). Those consenting to treatment were more comfortable than those forgoing treatment (for CPR and antibiotics P = .001). Spouses of patients with Stage 7 AD were more likely to forgo CPR than those with Stages 4 to 6 AD (P < .001). Only two of 50 spouses selected descriptors congruent with a purely substituted judgment standard of decision-making. An equal number of spouses rated patient quality of life as good, fair, or poor. For critical illness, the poorer the quality of life rating, the more likely the spouses were to forgo feeding tubes (P < .001). There was a trend for highly burdened spouses to consent to treatment. The results provide evidence that spouses of patients with AD anticipate forgoing life-sustaining treatments in the face of coma but are less sure about choices for critical illness. Although preliminary in nature, findings suggest that doctors, nurses, and social workers need to provide additional support to spouses choosing to forgo rather than consent to treatment and need to inquire as to what spouses perceive as the factors that are important to them in making a decision.