How Would Terminally Ill Patients Have Others Make Decisions for Them in the Event of Decisional Incapacity? A Longitudinal Study

OBJECTIVES: To determine the role terminally ill patients would opt to have their loved ones and physicians play in healthcare decisions should they lose decision-making capacity and how this changes over time.
DESIGN: Serial interviews.
SETTING: The study institutions were The Johns Hopkins Medical Institutions in Baltimore, Maryland, and St. Vincent's Hospital, in New York.
PARTICIPANTS: One hundred forty-seven patients with cancer, amyotrophic lateral sclerosis, or heart failure, at baseline and 3 and 6 months.
RESULTS: Patients' baseline decision control preferences varied widely, but most opted for shared decision-making, leaning slightly toward independence from their loved ones. This did not change significantly at 3 or 6 months. Fifty-seven percent opted for the same degree of decision control at 3 months as at baseline. In a generalized estimating equation model adjusted for time, more-independent decision-making was associated with college education ( P =.046) and being female ( P =.01), whereas more-reliant decision-making was associated with age ( P <.001). Patients leaned toward more reliance upon physicians to make best-interest determinations at diagnosis but opted for physicians to decide based upon their own independent wishes (substituted judgment) over time, especially if college educated.
CONCLUSION: Terminally ill patients vary in how much they wish their own preferences to control decisions made on their behalf, but most would opt for shared decision-making with loved ones and physicians. Control preferences are stable over time with respect to loved ones, but as they live longer with their illnesses, patients prefer somewhat less reliance upon physicians.     

Beyond autonomy: diversifying end-of-life decision-making approaches to serve patients and families

Efforts to improve end-of-life decision-making quality have emphasized the principle of individual autonomy to better ensure that patients receive care consistent with their preferences. This principle has primarily been defined through court decisions during the past 3 decades as a patient's right to refuse medical technologies and avoid life-prolonging treatments. However, autonomy as traditionally defined only serves a small segment of dying patients. Patients might not value autonomy or consider autonomy important but define it differently than decision-making self-determination. Some patients also think in terms of their care goals rather than individual treatment preferences. Patients' functional and cognitive abilities, age, racial and ethnic backgrounds, and desire to avoid burdening loved ones may influence attitudes and definitions regarding autonomy. To improve end-of-life decision-making for an increasingly multicultural and aging population, the following priorities should be set: (1) Increase the flexibility of advance care planning and decision-making strategies used with capable patients to encompass diverse perceptions of autonomy; and (2) Improve communication between physicians and patients' families when patients lack decision-making capacity to facilitate decision-making and address families' emotional burdens. The goal of these priorities is to promote understanding of patients' and families' decision-making preferences and goals and to minimize decision-making burdens on families.     

Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives

BACKGROUND: Past research has documented that primary care physicians and family members are often inaccurate when making substituted judgments for patients without advance directives (ADs). This study compared the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients and examined the effectiveness of ADs in improving the accuracy of these judgments. PARTICIPANTS AND METHODS: Participants were 24 primary care physicians of 82 elderly outpatients, 17 emergency and critical care physicians who had no prior experience with the patients, and a baseline comparison group of family surrogates. The primary outcome was accuracy of physicians' predictions of patients' preferences for 4 life-sustaining treatments in 9 hypothetical illness scenarios. Physicians made substituted judgments after being provided with no patient AD, patient's value-based AD, or patient's scenario-based AD. RESULTS: Family surrogates' judgments were more accurate than physicians'. Hospital-based physicians making predictions without ADs had the lowest accuracy. Primary care physicians' accuracy was not improved by either AD. Accuracy and confidence in predictions of hospital-based physicians was significantly improved for some scenarios using a scenario-based AD. CONCLUSIONS: Although ADs do not improve the accuracy of substituted judgments for primary care physicians or family surrogates, they increase the accuracy of hospital-based physicians. Primary care physicians are withdrawing from hospital-based care in growing numbers, and emergency medicine and critical care specialists most often are involved in decisions about whether to begin life-sustaining treatments. If ADs can help these physicians better understand patients' preferences, patient autonomy more likely will be preserved when patients become incapacitated.     

Micromanaging death: process preferences, values, and goals in end-of-life medical decision making

PURPOSE: This study examined patients' and surrogates' attitudes about using advance directives to manage end-of-life medical care. It also explored process preferences, or how patients want decisions to be made. DESIGN AND METHODS: Data come from the third wave of the Advance Directives, Values Assessment, and Communication Enhancement project, a longitudinal study designed to investigate psychological assumptions underlying the use of advance directives. Three-hundred thirty-seven outpatients aged 65 and older and their designated surrogate decision makers completed interviews and questionnaires. RESULTS: Very few individuals wished to document specific medical treatment preferences and mandate that they be followed, without exception, near death. Most desired to express more general preferences, such as values and goals for care, in addition to (or, instead of) specific treatment preferences and to allow surrogate decision makers leeway in decision making. Patient-to-patient variability with regard to process preferences was substantial, as was surrogates' misunderstanding of the patients' process preferences. IMPLICATIONS: Very few individuals may desire the standard approach to advance care planning whereby preferences for specific life-sustaining treatments are documented and these requests are strictly followed near death. Instead, patient autonomy may be better served by emphasizing discussion of process preferences and leeway in decision making.     

Advance directives as acts of communication: a randomized controlled trial

BACKGROUND: Instructional advance directives are widely advocated as a means of preserving patient self-determination at the end of life based on the assumption that they improve surrogates' understanding of patients' life-sustaining treatment wishes. However, no research has examined whether instructional directives are effective in improving the accuracy of surrogate decisions. PARTICIPANTS AND METHODS: A total of 401 outpatients aged 65 years or older and their self-designated surrogate decision makers (62% spouses, 29% children) were randomized to 1 of 5 experimental conditions. In the control condition, surrogates predicted patients' preferences for 4 life-sustaining medical treatments in 9 illness scenarios without the benefit of a patient-completed advance directive. Accuracy in this condition was compared with that in 4 intervention conditions in which surrogates made predictions after reviewing either a scenario-based or a value-based directive completed by the patient and either discussing or not discussing the contents of the directive with the patient. Perceived benefits of advance directive completion were also measured. RESULTS: None of the interventions produced significant improvements in the accuracy of surrogate substituted judgment in any illness scenario or for any medical treatment. Discussion interventions improved perceived surrogate understanding and comfort for patient-surrogate pairs in which the patient had not completed an advance directive prior to study participation. CONCLUSIONS: Our results challenge current policy and law advocating instructional advance directives as a means of honoring specific patient wishes at the end of life. Future research should explore other methods of improving surrogate decision making and consider the value of other outcomes in evaluating the effectiveness of advance care planning.     

Agreement between older persons and their surrogate decision-makers regarding participation in advance care planning

OBJECTIVES: To examine agreement between older persons and their surrogates regarding participation in advance care planning (ACP). DESIGN: Observational cohort study. SETTING: Community. PARTICIPANTS: Persons aged 65 and older and the individual they identified as most likely to make treatment decisions on their behalf. MEASUREMENTS: Older persons were asked about participation in four activities: completion of living will, completion of healthcare proxy, communication regarding views about life‐sustaining treatment, and communication regarding views about quality versus quantity of life. Surrogates were asked whether they believed the older person had completed these activities. RESULTS: Of 216 pairs, 81% agreed about whether a living will had been completed (κ=0.61, 95% confidence interval (CI) 0.51–0.72). Only 68% of pairs agreed about whether a healthcare proxy had been completed (κ=0.39, 95% CI 0.29–0.50), 64% agreed about whether they had communicated regarding life‐sustaining treatment (κ=0.22, 95% CI 0.09–0.35), and 62% agreed about whether they had communicated regarding quality versus quantity of life (κ=0.23, 95% CI 0.11–0.35). CONCLUSION: Although agreement between older persons and their surrogates regarding living will completion was good, agreement about participation in other aspects of ACP was fair to poor. Additional study is necessary to determine who is providing the most accurate report of objective ACP components and whether agreement regarding participation in ACP is associated with greater shared understanding of patient preferences.     

Resident approaches to advance care planning on the day of hospital admission

BACKGROUND: Advance care planning is the process of establishing a patient's goals and preferences for future care. Previous research has demonstrated a need to improve patient-physician communication around advance care planning. A critical time for advance care planning conversations is the day of admission to the hospital. METHODS: A survey of internal medicine residents was administered at Duke University Medical Center and the Brigham and Women's Hospital, 2 major academic teaching centers. Residents were questioned about their approaches to advance care planning on their last on-call admitting day. RESULTS: Of 347 residents solicited, 292 (84.1%) participated in the survey. Residents reported that they established preferences for cardiopulmonary resuscitation (CPR) with 70.5% of patients, established a health care proxy with 33.7% of patients, discussed goals and values concerning end-of-life care with 32.0% of patients, and asked 35.6% of patients if they had an advance directive. Although 89.0% of residents had observed an advance care planning discussion model, only 66.4% had received teaching and 36.6% had received feedback about advance care planning conversations. In multivariable analysis, having received feedback about advance care planning conversations was associated with a higher percentage of conversations about health care proxy and goals and values related to the end of life. CONCLUSIONS: Residents discuss patient preferences for CPR on the day of admission with most patients. Preparing residents, particularly through feedback, may improve communication around other elements of advance care planning.     

Family Understanding of Seriously-ill Patient Preferences for Family Involvement in Healthcare Decision Making

Background  

Surrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.     

Planning for decisional incapacity. A neglected area in ethics and aging

Practitioners and elderly patients share a common interest in advance planning for future health care decision-making in the event of decisional incapacity. It is argued that advance directives can: assist the elderly person in maximizing self-determination; and help physicians in caring for the elderly and their families by removing conflict potential. Furthermore, the author compares the legal and medical understandings of patient self-determination and the uses of best interest and substituted judgment standards. It is argued that medicine and law differ on the important issues only in degree of emphasis, not in principle. To clarify the issues, a systematic classification of the multiple levels of instruction directives and agent-proxy decision-making models is developed. Finally, it is recommended that health care decision-making for the elderly can be enhanced by encouraging patients to create as much evidence as possible to affirm their preferences and values; and plan the delegation of decisions by appointing a proxy.     

Racial variations in end-of-life care

OBJECTIVES: To identify differences in advanced care planning and end-of-life decision-making between whites and blacks aged 70 and older. DESIGN: The Asset and Health Dynamics Among the Oldest Old (AHEAD) study is a nationally representative survey of adults who were aged 70 and older in 1993. Relatives (proxy respondents) for 540 persons who died between the first (1993) and second (1995) waves of the study were surveyed about advanced care planning and end-of-life decisions that were made for their family member who died. SETTING: Respondents were interviewed at home by telephone (n = 444) or in person (n = 95). PARTICIPANTS: The 540 proxy respondents included 454 whites and 86 blacks. MEASUREMENTS: Questions were asked about advance care planning and end-of-life decisions. RESULTS: Whites were significantly more likely than blacks to discuss treatment preferences before death (P = .002), to complete a living will (P = .001), and to designate a Durable Power of Attorney for Health Care (DPAHC) (P = .032). The treatment decisions for whites were more likely to involve limiting care in certain situations (P = .007) and withholding treatment before death (P = .034). In contrast, the treatment decisions for blacks were more likely to be based on the desire to provide all care possible in order to prolong life (P = .013). Logistic regression models revealed that race continued to be a significant predictor of advance care planning and treatment decisions even after controlling for sociodemographic factors. CONCLUSIONS: These findings suggest that there are important differences between blacks and whites regarding advanced care planning and end-of-life decision-making. Health professionals need to understand the diverse array of end-of-life preferences among various racial and ethnic groups and to develop greater awareness and sensitivity to these preferences when helping patients with end-of-life decision-making.     

Advance care planning

Advance directives allow patients to have some control over decisions even when they are no longer able to make decisions themselves. All states authorize written advance directives, such as the appointment of a health care proxy, but commonly impose procedural requirements. Some states have restricted the use of oral advance directives, although they are frequently used in everyday practice. Advance directives are limited because they are infrequently used, may not be informed, and may conflict with the patient's current best interests. Moreover, surrogates often cannot state patients' preferences accurately. Furthermore, discussions among physicians and patients about advance directives are flawed. Physicians can improve discussions about advance directives by asking the patient who should serve as proxy and by ascertaining the patient's values and general preferences before discussing specific clinical situations.     

Surrogate decision making: reconciling ethical theory and clinical practice

The care of adult patients without decision-making abilities is a routine part of medical practice. Decisions for these patients are typically made by surrogates according to a process governed by a hierarchy of 3 distinct decision-making standards: patients' known wishes, substituted judgments, and best interests. Although this framework offers some guidance, it does not readily incorporate many important considerations of patients and families and does not account for the ways in which many patients and surrogates prefer to make decisions. In this article, the authors review the research on surrogate decision making, compare it with normative standards, and offer ways in which the 2 can be reconciled for the patient's benefit.     

End-of-life health care planning among young-old adults: an assessment of psychosocial influences

OBJECTIVES: End-of-life planning among healthy older adults may protect them from unwanted medical treatments in later life, in the event that they become incapable of making health care decisions for themselves. We explore two formal and one informal components of end-of-life planning (living will, durable power of attorney for health care, and discussions) and assess whether one's health and health care encounters, personal beliefs, and experience with others' deaths affect these practices. METHODS: Using two waves of data (1992-1993 and 2004) from the Wisconsin Longitudinal Study, we estimated binary and multinomial logistic regression models to predict end-of-life preparations among a sample of community-dwelling persons aged 64-65 (N=3,838). RESULTS: Recent hospitalizations, personal beliefs (Death Avoidance and the belief that doctors should control health care decisions), and recent experience with the painful death of a loved one all influence end-of-life preparations. Consistent with past studies, we also found that education, gender, marital status, and religious affiliation affect end-of-life planning. DISCUSSION: Health care providers may encourage end-of-life preparations by assuaging patients' death anxiety and fostering decision-making autonomy. Initiating discussions about recent deaths of loved ones may be an effective way to trigger patients' own end-of-life preparations.     

Dialysis patients' preferences for family-based advance care planning.

BACKGROUND: Most patients do not participate in advance care planning with physicians. OBJECTIVE: To examine patients' preferences for involving their physicians and families in advance care planning. DESIGN: Face-to-face interviews with randomly selected patients. SETTING: Community-based dialysis units in one rural and one urban region. PARTICIPANTS: 400 hemodialysis patients. MEASUREMENTS: Questions about whom patients involve in advance care planning, whom patients would like to include in this planning, and patients' reactions to state legislation on surrogate decision makers in end-of-life care. RESULTS: Patients more frequently discussed preferences for end-of-life care with family members than with physicians (50% compared with 6%; P < 0.001). More patients wanted to include family members in future discussions of advance care planning than wanted to include physicians (91% compared with 36%; P < 0.001). Patients were most comfortable with legislation that granted their family end-of-life decision-making authority in the event of their own incapacity (P < 0.001). CONCLUSION: Most patients want to include their families more than their physicians in advance care planning.     

Medical decision making for patients without surrogates

Patients who lose decision-making capacity and lack advance directives and next of kin present a quandary for physicians. Current mechanisms for making treatment decisions for these patients rely on decision makers, such as courts, public guardians, committees, and physicians, who typically do not have sufficient knowledge to predict the patients' preferences. Thus, these mechanisms likely yield decisions that are inconsistent with patients' treatment preferences in many cases. A population-based treatment indicator is a computer-based tool that predicts which treatment a given patient would prefer based on the treatment preferences of similar patients in similar situations. A recent analysis suggests that a population-based treatment indicator could predict patient preferences as accurately as patient-appointed surrogates and next of kin. This analysis suggests that a population-based treatment indicator may provide a mechanism to respect the treatment preferences of patients without surrogates and ensure that their treatment preferences are respected as much as the preferences of patients who have surrogates. Collection of data on patients' treatment preferences, especially those without surrogates, incorporation of these data into a treatment indicator, and exploration of ways to implement this approach for patients without surrogates are called for.     

Giving up on the objective of providing goal-concordant care: Advance care planning for improving caregiver outcomes

The merits and effectiveness of advance care planning (ACP) continue to be debated a full 30 years after the passage of the Patient Self-Determination Act. This act gave patients the right to create advance directives, with the objective of ensuring that the care they received at the end of life was consistent with their preferences and goals. ACP has definitively moved beyond the completion of advance directives to encompass the identification of a healthcare agent and the facilitation of communication among patients, surrogates, and clinicians. Nonetheless, the provision of goal-concordant care remains a primary objective for ACP. This article argues that this cannot and should not be the objective for ACP. Patients' goals change, and the provision of goal-concordant care is sometimes incompatible with other critical determinants of appropriate care. Instead, ACP should focus on the objective of improving caregiver outcomes. Surrogate decision-making by caregivers is associated with an elevated risk of post-traumatic stress disorder and other adverse outcomes, and these outcomes can be improved with ACP. ACP focused on caregivers involves helping caregivers to understand how they can help to shape the final chapter in a patient's life story, preventing caregivers from making promises they cannot keep, and preparing them to use all relevant information at the time decisions need to be made.