Legal fundamentals of surrogate decision making

The four previous articles in this series have traced the history of patient autonomy and have identified its ethical and legal foundations. Patient autonomy is highly valued in the United States to the extent that the patient does not lose the right of self-determination when he or she loses the capacity to make health-care decisions for him or herself. The law has devised several tools to promote "prospective autonomy." One mechanism is the instructional advance directive or living will. But most of us do not write such directives. Another mechanism is the proxy directive or durable power of attorney for health care, designating another person, a surrogate, to direct the course of our medical treatment upon our incapacity. But most of us do not do that either. Therefore, the most common mechanism by which our prospective autonomy is protected and promoted is through the informal selection of surrogates based on statutory priority lists. These "default" surrogates are the most numerous type of surrogate. This article explains the importance and legal fundamentals of surrogate decision making. It first describes five basic types of surrogates. The article then looks at the role of these surrogates and how they are supposed to make decisions on the patient's behalf. Unfortunately, surrogate performance is often mediocre or poor. There are significant and persistent obstacles to good surrogate decision making. After explaining these problems, the article concludes by identifying several solutions.     

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.     

Physicians' Views on the Importance of Patient Preferences in Surrogate Decision‐Making

OBJECTIVES: To explore the degree to which physicians report reliance on patient preferences when making medical decisions for hospitalized patients lacking decisional capacity. DESIGN: Cross‐sectional survey. SETTING: One academic and two community hospitals in a single metropolitan area. PARTICIPANTS: Two hundred eighty‐one physicians who recently cared for hospitalized adults. MEASUREMENTS: A self‐administered survey addressing physicians' beliefs about ethical principles guiding surrogate decision‐making and physicians' recent decision‐making experiences. RESULTS: Overall, 72.6% of physicians identified a standard related to patient preferences as the most important ethical standard for surrogate decision‐making (61.2% identified advanced directives and 11.4% substituted judgment). Of the 73.3% of physicians who reported recently making a surrogate decision, 81.8% reported that patient preferences were highly important in decision‐making, although only 29.4% reported that patient preference was the most important factor in the decision. Physicians were significantly more likely to base decisions on patient preferences when the patient was in the intensive care unit (odds ratio (OR)=2.92, 95% confidence interval (CI)=1.15–7.45) and less likely when the patient was older (OR=0.76 for each decade of age, 95% CI=0.58–0.99). The presence of a living will, prior discussions with the patient, and the physicians' beliefs about ethical guidelines did not significantly predict the physicians' reliance on patient preferences. CONCLUSION: Although a majority of physicians identified patient preferences as the most important general ethical guideline for surrogate decision‐making, they relied on a variety of factors when making treatment decisions for a patient lacking decisional capacity.     

Agreement between patients and their self-selected surrogates on difficult medical decisions.

BACKGROUND--Several studies have demonstrated that surrogate decision makers often are unable to use substituted judgment when asked to make decisions for incompetent patients. This study further explored this question, using a relatively young, healthy sample of 50 patient/surrogate pairs. METHODS--Patients were randomly recruited from a community family practice clinic and asked to select a surrogate. Five case vignettes were presented to patients and surrogates during separate interviews. Vignettes asked for decisions related to ventilation, resuscitation, and tube feeding for a patient in permanent coma, amputation as life-extending treatment for a mentally confused patient, and chemotherapy for a decisionally incapacitated patient with advanced cancer. Factors considered important to decision making were also investigated. RESULTS--As groups, patients and surrogates were similar as they chose to withdraw or continue treatment in the same proportions. However, within individual pairs, agreement on treatment occurred only 70% of the time even though surrogates were asked to base their treatment decisions on substituted judgment. The kappa coefficients indicated that the rate of agreement in individual vignettes was low. Patients considered "burden on the family" and "time left to live" as the most important factors in choosing among difficult treatment options, while surrogates identified the patients' pain as the most important factor. CONCLUSIONS--The high rate of discrepant decisions underscores the importance of effective patient-surrogate communication before medical decision-making incompetence occurs. The potential of increasing patient-surrogate agreement on difficult medical decisions by educational interventions should be explored.     

Substituted judgment: how accurate are proxy predictions?

Substituted judgment has been proposed as a method of promoting the autonomy of the mentally incapacitated patient, but little is known about the accuracy of surrogate decision makers in reflecting the true wishes of patients. In this study, surrogate decision makers' views (those of primary care providers and close family members) were compared with the decisions of currently competent chronically ill elderly patients, using a hypothetic cardiopulmonary resuscitation scenario under circumstances of current health and progressive dementia. Concordance between patients and their surrogates was evaluated by assessing percent agreement, kappa coefficient (for concordance beyond chance), and directionality of discrepant responses. Most patient respondents chose to be resuscitated in both scenarios. Although patients predicted that both their physicians (90%) and family members (87%) would accurately represent their wishes, neither family members nor physicians, in fact, were able to adequately predict patients' wishes in both scenarios (kappa less than or equal to 0.3 in all scenarios; percent agreement range, 59% to 88%). Few patients had ever discussed their resuscitation preferences with either their family member (16%) or their physician (7%). These results cast doubt on the usefulness of a strict substituted judgment standard as an approach to medical decision making for patients with diminished mental capacity.     

An evaluation of the decision tree format of the American College of Rheumatology 1987 classification criteria for rheumatoid arthritis: performance over five years in a primary care-based prospective study

OBJECTIVE: The American College of Rheumatology (ACR) 1987 criteria for rheumatoid arthritis (RA) can be applied in 2 formats, a standard "x/y" list and a decision tree. This study evaluated the performance of the decision tree compared with the list approach in the ascertainment of RA in subjects with new-onset inflammatory polyarthritis (IP) over the first 5 years of observation. Moreover, the use of clinical surrogates to substitute for missing rheumatoid factor (RF) and radiologic erosion data was assessed for validity and for its influence on the resulting RA prevalence estimates. METHODS: In this population-based prospective study, 848 subjects with new-onset IP were interviewed and examined at baseline, with followup at 1, 2, 3, and 5 years. RF and erosion status were determined at prespecified time points. The list criteria were applied cumulatively, while the decision tree was applied cross-sectionally using either data surrogates or the actual reported data. RA prevalence in the 848 subjects and agreement in classification between the 2 methods was assessed at each time point. The influence of using clinical surrogates on RA prevalence estimates at 5 years and the agreement between surrogate and real results were also analyzed. RESULTS: At baseline, RA prevalence was higher using the decision tree compared with the list approach (63% versus 47%; P = 0.0001); by 5 years of followup, RA estimates were approximately equal (69% versus 72%) and agreement between the approaches was good (kappa = 0.67). The use of surrogates had little influence on RA prevalence at 5 years, although substitution of metacarpophalangeal joint swelling for erosion produced a higher RA prevalence estimate (78% versus 70%). Although there was only weak agreement between surrogate and real data, the use of the surrogate data provided good to very good agreement between the approaches in categorizing subjects as RA positive (kappa = 0.61-0.72). CONCLUSION: Over 5 years, the 2 formats of the ACR criteria for RA performed similarly, with no important differences between them. The use of surrogates for missing radiologic and serologic data did not have any major influence on disease classification. Although the RA criteria were not originally derived from subjects with early disease in a population setting, this study shows that the use of the decision tree approach with the option of substituting clinical surrogates for missing laboratory data is an appropriate alternative to the conventional list approach.     

The physician-surrogate relationship

The physician-patient relationship is a cornerstone of the medical encounter and has been analyzed extensively. But in many cases, this relationship is altered because patients are unable to make decisions for themselves. In such cases, physicians rely on surrogates, who are often asked to "speak for the patient." This view overlooks the fundamental fact that the surrogate decision maker cannot be just a passive spokesperson for the patient but is also an active agent who develops a complex relationship with the physician. Although there has been much analysis of the ethical guidelines by which surrogates should make decisions, there has been little previous analysis of the special features of the physician-surrogate relationship. Such an analysis seems crucial as the population ages and life-sustaining technologies improve, which is likely to make surrogate decision making even more common. We outline key issues affecting the physician-surrogate relationship and provide guidance for physicians who are making decisions with surrogates.     

Valuing the outcomes of treatment: do patients and their caregivers agree?

BACKGROUND: Treatment outcomes are an important determinant of patients' treatment preferences. Although studies have examined how well surrogates agree with patients' preferences for specific treatment interventions, agreement regarding the valuation of health states as treatment outcomes is unknown. METHODS: Cross-sectional cohort study consisting of in-home interviews with 193 persons 60 years or older and seriously ill with cancer, congestive heart failure, or chronic obstructive pulmonary disease and their caregivers. Patients were asked whether, facing an exacerbation of illness, they would find a series of health states acceptable as a result of treatment (a rating of "unacceptable" meant they would prefer to die than to receive treatment). Caregivers were asked whether they would find these states acceptable for the patient. RESULTS: There was 80% or greater agreement for health states that were overall rated either acceptable (current health, mild memory impairment, mild pain, or other symptoms) or unacceptable (coma). There was 58% to 62% agreement (kappa = 0.10-0.25) about states with more severe physical or cognitive impairment. When disagreement occurred, caregivers were more likely to rate the state as acceptable. There was 61% to 65% agreement (kappa = 0.20-0.28) about states with severe pain or other symptoms. When disagreement occurred, caregivers and patients were equally likely to rate the state as acceptable. CONCLUSIONS: Patient-caregiver agreement about the acceptability of health states with functional or cognitive impairment, severe pain, or other symptoms was poor. Caregivers making surrogate decisions based on considerations of treatment outcomes may not effectively represent patients' preferences.     

When Frail Individuals or Their Families Request Nonindicated Interventions: Usefulness of the Four‐Box Ethical Approach

In the age of person‐centered care, there is an emphasis on promoting patient autonomy and surrogate decision maker authority in making treatment decisions that are aligned with the patient's priorities and values. As technological advances offer multiple clinical options with various levels and types of risks and benefits, person‐centered clinical practice encourages the incorporation of patients' and families' heterogeneous experiences into decisions regarding illness management. In caring for frail elderly adults, clinicians are sometimes faced with situations in which individuals and their surrogate decision‐makers request a treatment that the clinicians feel is clinically inappropriate. This article provides a case example of a frail older adult with advanced chronic kidney disease who requests dialysis despite the advice of his nephrologist to pursue conservative management. The four‐box approach, which provides clinicians with a structured ethical framework to facilitate informed and ethically justified treatment decisions, is then introduced. By considering the patient's medical indications, preferences, quality of life, and contextual factors, how each consideration plays a unique yet equally important role in informing clinically responsible and person‐centered care is illustrated.     

The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness

Many patients who develop incapacitating illness have not expressed clear treatment preferences. Therefore, surrogate decision makers are asked to make judgments about what treatment pathway is most consistent with the patient's values. Surrogates often struggle with such decisions. The difficulty arises because answering the seemingly straightforward question, "What do you think the patient would choose?" is emotionally, cognitively, and morally complex. There is little guidance for clinicians to assist families in constructing an authentic picture of the patient's values and applying them to medical decisions, in part because current models of medical decision making treat the surrogate as the expert on the patient's values and the physician as the expert on technical medical considerations. However, many surrogates need assistance in identifying and working through the sometimes conflicting values relevant to medical decisions near the end of life. We present a framework for clinicians to help surrogates overcome the emotional, cognitive, and moral barriers to high-quality surrogate decision making for incapacitated patients.     

Timing of do-not-resuscitate orders for hospitalized older adults who require a surrogate decision-maker

OBJECTIVES: To examine the frequency of surrogate decisions for in‐hospital do‐not‐resuscitate (DNR) orders and the timing of DNR order entry for surrogate decisions. DESIGN: Retrospective cohort study. SETTING: Large, urban, public hospital. PARTICIPANTS: Hospitalized adults aged 65 and older over a 3‐year period (1/1/2004–12/31/2006) with a DNR order during their hospital stay. MEASUREMENTS: Electronic chart review provided data on frequency of surrogate decisions, patient demographic and clinical characteristics, and timing of DNR orders. RESULTS: Of 668 patients, the ordering physician indicated that the DNR decision was made with the patient in 191 cases (28.9%), the surrogate in 389 (58.2%), and both in 88 (13.2%). Patients who required a surrogate were more likely to be in the intensive care unit (62.2% vs 39.8%, P<.001) but did not differ according to demographic characteristics. By hospital Day 3, 77.6% of patient decisions, 61.9% of surrogate decisions, and 58.0% of shared decisions had been made. In multivariable models, the number of days from admission to DNR order was higher for surrogate (odds ratio (OR)=1.97, P<.001) and shared decisions (OR=1.48, P=.009) than for patient decisions. The adjusted hazard ratio for hospital death was higher for patients with surrogate than patient decisions (2.61, 95% confidence interval (CI)=1.56–4.36). Patients whose DNR orders were written on Day 6 or later were twice as likely to die in the hospital (OR=2.20, 95% CI=1.45–3.36) than patients with earlier DNR orders. CONCLUSION: For patients who have a DNR order entered during their hospital stay, order entry occurs later when a surrogate is involved. Surrogate decision‐making may take longer because of the greater ethical, emotional, or communication complexity of making decisions with surrogates than with patients.     

AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults

In this position statement, we define unbefriended older adults as patients who: (1) lack decisional capacity to provide informed consent to the medical treatment at hand; (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so; and (3) lack family, friends or a legally authorized surrogate to assist in the medical decision‐making process. Given the vulnerable nature of this population, clinicians, health care teams, ethics committees and other stakeholders working with unbefriended older adults must be diligent when formulating treatment decisions on their behalf. The process of arriving at a treatment decision for an unbefriended older adult should be conducted according to standards of procedural fairness and include capacity assessment, a search for potentially unidentified surrogate decision makers (including non‐traditional surrogates) and a team‐based effort to ascertain the unbefriended older adult's preferences by synthesizing all available evidence. A concerted national effort is needed to help reduce the significant state‐to‐state variability in legal approaches to unbefriended patients. Proactive efforts are also needed to identify older adults, including “adult orphans,” at risk for becoming unbefriended and to develop alternative approaches to medical decision making for unbefriended older adults. This document updates the 1996 AGS position statement on unbefriended older adults.     

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.     

When do patients and their physicians agree on diabetes treatment goals and strategies,and what difference does it make?

BACKGROUND: For patients with chronic illnesses, it is hypothesized that effective patient-provider collaboration contributes to improved patient self-care by promoting greater agreement on patient-specific treatment goals and strategies. However, this hypothesis has not been tested in actual encounters of patients with their own physicians. OBJECTIVE: To assess the extent to which patients with type 2 diabetes agree with their primary care providers (PCPs) on diabetes treatment goals and strategies, the factors that predict agreement, and whether greater agreement is associated with better patient self-management of diabetes. DESIGN: One hundred twenty-seven pairs of patients and their PCPs in two health systems were surveyed about their top 3 diabetes treatment goals (desired outcomes) and strategies to meet those goals. Using several measures to evaluate agreement, we explored whether patient characteristics, such as education and attitudes toward treatment, and patient-provider interaction styles, such as shared decision making, were associated with greater agreement on treatment goals and strategies. We then examined whether agreement was associated with higher patient assessments of their diabetes care self-efficacy and self-management. RESULTS: Overall, agreement on top treatment goals and strategies was low (all kappa were less than 0.40). In multivariable analyses, however, patients with more education, greater belief in the efficacy of their diabetes treatment, and who shared in treatment decision making with their providers were more likely to agree with their providers on treatment goals or strategies. Similarly, physician reports of having discussed more content areas of diabetes self-care were associated with greater agreement on treatment strategies. In turn, greater agreement on treatment goals and strategies was associated both with higher patient diabetes care self-efficacy and assessments of their diabetes self-management. CONCLUSION: Although patients and their PCPs in general had poor agreement on goals and strategies for managing diabetes, agreement was associated with higher patient self-efficacy and assessments of their diabetes self-management. This supports the hypothesis that enhancing patient-provider agreement on both overall treatment goals and specific strategies to meet these goals may lead to improved patient outcomes.     

Physicians’ Experience with Surrogate Decision Making for Hospitalized Adults

Background  Hospitalized patients frequently lack decision-making ability, yet little is known about physicians’ approaches to surrogate decision making. Objective  To describe physicians’ experiences with surrogate communication and decision making for hospitalized adults. Design  Cross-sectional written survey. Participants  Two hundred eighty-one physicians who recently cared for adult inpatients in one academic and two community hospitals. Measurements  Key features of physicians’ most recent surrogate decision-making experience, including the nature of the decision, the physician’s reaction, physician-surrogate communication and physician-surrogate agreement about the best course of action. Results  Nearly three fourths of physicians (73%, n = 206) had made a major decision with a surrogate during the past month. Although nearly all patients (90%) had a surrogate, physicians reported trouble contacting the surrogate in 21% of cases. Conflict was rare (5%), and a majority of physicians agreed with surrogates about the medical facts (77%), prognosis (72%) and best course of action (65%). After adjustment for patient, physician and decision characteristics, agreement about the best course of action was more common among surrogates for older patients [prevalence ratio (PR) = 1.17 for each decade; 95% confidence interval (CI) 1.02–1.31], ICU patients (PR = 1.40; CI 1.14–1.51) and patients who had previously discussed their wishes (PR = 1.60; CI 1.30–1.76), and less common when surrogates were difficult to contact (PR = 0.59; CI 0.29–0.92) or when the physician self-identified as Asian (PR = 0.60; CI 0.30–0.94). Conclusion  Surrogate decision making is common among hospitalized adults. Physician-surrogate decision making may be enhanced if patients discuss their preferences in advance and if physician contact with surrogate decision makers is facilitated. Electronic supplementary material  The online version of this article (doi:) contains supplementary material, which is available to authorized users. Prior Presentation  This paper was presented in part at the National Meeting of the Society of General Internal Medicine, April 2007.     

Horses for courses? Assessing the potential value of a surrogate,point‐of‐care test for SARS‐CoV‐2 epidemic control

Point‐of‐care tests (POCTs) offer considerable potential for improving clinical and public health management of COVID‐19 by providing timely information to guide decision‐making, but data on real‐world performance are in short supply. Besides SARS‐CoV‐2‐specific tests, there is growing interest in the role of surrogate (non‐specific) tests such as FebriDx, a biochemical POCT which can be used to distinguish viral from bacterial infection in patients with influenza‐like illnesses. This short report assesses what is currently known about FebriDx performance across settings and populations by comparison with some of the more intensively evaluated SARS‐CoV‐2‐specific POCTs. While FebriDx shows some potential in supporting triage for early‐stage infection in acute care settings, this is dependent on SARS‐CoV‐2 being the most likely cause for influenza‐like illnesses, with reduction in discriminatory power when COVID‐19 case numbers are low, and when co‐circulating viral respiratory infections become more prevalent during the autumn and winter. Too little is currently known about its performance in primary care and the community to support use in these contexts, and further evaluation is needed. Reliable SARS CoV2‐specific POCTs—when they become available—are likely to rapidly overtake surrogates as the preferred option given the greater specificity they provide.     

A new myth about families of older people?

Are gerontologists creating a new myth about families by emphasizing individual autonomy as independence without family interdependence, by advocating advance directives instead of supporting a rebuttable presumption of family surrogates, and following the lead of the U.S. Supreme Court in the Cruzan case (Cruzan v. Director, 1990), by ignoring intergenerational interdependencies in surrogate decision making? This paper argues that another antifamily trend is developing despite empirical evidence showing that elderly persons themselves prefer family members to represent them in surrogate decision making. Research and public policy suggestions are offered for protecting the elderly's preferences.