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.     

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.     

Resident physician interactions with surrogate decision-makers: the resident experience

This study explored interactions between medical residents and patient surrogates in order to clarify resident understanding of roles and relationships, resident emotional experience, and resident learning processes. Qualitative analysis of in-depth interviews were used involving three family medicine residency programs serving culturally diverse, urban, underserved patient populations. Eighteen second- and third-year trainees described a memorable interaction with a surrogate and then were prompted to discuss their learning experience and their role in the interaction. Interviews were transcribed verbatim and analyzed through an iterative process. Residents experienced significant emotional burden during interactions yet continued to value their relationships with surrogates. Despite their reservations about giving recommendations, residents adopted a variety of roles with surrogates as they gave support, information, and advice. Although residents reported little formal education about surrogate decision-making, they relied on passive role modeling and their own previous experiences to help surrogates make decisions. Residents have complex and emotionally significant interactions with surrogates despite minimal formal education about surrogate decision-making. Educational efforts should seek to help residents understand their own emotions and the ethical beliefs that underlie the roles they adopt with surrogates. This will help residents to facilitate value-based conversations with surrogates and better support surrogates in the decision-making process.     

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.     

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.     

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.     

Questioning the decision-making capacity of surrogates

When patients are unable to make medical decisions for themselves due to cognitive impairment, surrogate decision makers are often called on to guide the medical team. Important to any decision made on behalf of the patient is that the decision reflects the values and preferences of the patient in light of the patient's clinical status and prognosis. Challenges arise for the medical team when surrogates themselves have questionable decision-making capacity due to psychosocial issues, conflict of interest, or the obvious projection of their own personal values and treatment preferences instead of the patient's. Even if an alternative surrogate is available, there is no consensus on when and how to switch from the primary surrogate to the alternative surrogate. This paper uses a clinical case to explore the notion of surrogate decision-making capacity, offering guidance for determining when it is appropriate to defer to an alternative surrogate, as well as guidance for managing the process of appointing the alternative as the new primary decision maker.     

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.     

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.     

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.     

Healthcare Proxies of Nursing Home Residents with Advanced Dementia: Decisions They Confront and Their Satisfaction with Decision-Making

OBJECTIVES: To describe the medical decisions confronting healthcare proxies (HCPs) of nursing home (NH) residents with advanced dementia and to identify factors associated with greater decision-making satisfaction.
DESIGN: Prospective cohort study.
SETTING: Twenty-two Boston-area NHs.
PARTICIPANTS: Three hundred twenty-three NH residents with advanced dementia and their HCPs.
MEASUREMENTS: Decisions made by HCPs over 18 months were ascertained quarterly. After making a decision, HCPs completed the Decision Satisfaction Inventory (DSI) (range 0–100). Independent variables included HCP and resident sociodemographic characteristics, health status, and advance care planning. Multivariable linear regression identified factors associated with higher DSI scores (greater satisfaction).
RESULTS: Of 323 HCPs, 123 (38.1%) recalled making at least one medical decision; 232 decisions were made, concerning feeding problems (27.2%), infections (20.7%), pain (12.9%), dyspnea (8.2%), behavior problems (6.9%), hospitalizations (3.9%), cancer (3.0%), and other complications (17.2%). Mean DSI score±standard deviation was 78.4±19.5, indicating high overall satisfaction. NH provider involvement in shared decision-making was the area of least satisfaction. In adjusted analysis, greater decision-making satisfaction was associated with the resident living on a special care dementia unit ( P =.002), greater resident comfort ( P =.004), and the HCP not being the resident's child ( P =.02).
CONCLUSION: HCPs of NH patients with advanced dementia can most commonly expect to encounter medical decisions relating to feeding problems, infections, and pain. Inadequate support from NH providers is the greatest source of HCP dissatisfaction with decision-making. Greater resident comfort and care in a special care dementia unit are potentially modifiable factors associated with greater decision-making satisfaction.     

Advance Care Planning in Cognitively Impaired Older Adults

Older adults with cognitive impairment face many healthcare challenges, chief among them participating in medical decision‐making about their own health care. Advance care planning (ACP) is the process whereby individuals communicate their wishes for future care with their clinicians and surrogate decision‐makers while they are still able to do so. ACP has been shown to improve important outcomes for individuals with cognitive impairment, but rates of ACP for these individuals are low because of individual‐, clinician‐, and system‐related factors. Addressing ACP early in the illness trajectory can maximize the chances that people can participate meaningfully. This article recommends best practices for approaching ACP for older adults with cognitive impairment. The importance of providing anticipatory guidance and eliciting values to guide future care to create a shared framework between clinicians, individuals, and surrogate decision‐makers is emphasized. It is recommended that ACP be approached as an iterative process to continue to honor and support people's wishes as cognitive impairment progresses and increasingly threatens independence and function. The article describes effective strategies for assessing decision‐making capacity, identifying surrogate decision‐makers, and using structured communication tools for ACP. It also provides guidelines for documentation and billing. Finally, special considerations for individuals with advanced dementia are described, including the use of artificial hydration and nutrition, decisions about site of care, and the role of hospice care.     

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.     

Ethics and end-of-life care for adults in the intensive care unit

The intensive care unit (ICU) is where patients are given some of the most technologically advanced life-sustaining treatments, and where difficult decisions are made about the usefulness of such treatments. The substantial regional variability in these ethical decisions is a result of many factors, including religious and cultural beliefs. Because most critically ill patients lack the capacity to make decisions, family and other individuals often act as the surrogate decision makers, and in many regions communication between the clinician and family is central to decision making in the ICU. Elsewhere, involvement of the family is reduced and that of the physicians is increased. End-of-life care is associated with increased burnout and distress among clinicians working in the ICU. Since many deaths in the ICU are preceded by a decision to withhold or withdraw life support, high-quality decision making and end-of-life care are essential in all regions, and can improve patient and family outcomes, and also retention of clinicians working in the ICU. To make such a decision requires adequate training, good communication between the clinician and family, and the collaboration of a well functioning interdisciplinary team.     

Titrating guidance: a model to guide physicians in assisting patients and family members who are facing complex decisions

Over the last century, developments in new medical treatments have led to an exponential increase in longevity, but, as a consequence, patients may be left with chronic illness associated with long-term severe functional and cognitive disability. Patients and their families are often forced to make a difficult and complex choice between death and long-term debility, neither of which is an acceptable outcome. Traditional models of medical decision making, however, do not fully address how clinicians should best assist with these decisions. Herein, we present a new paradigm that demonstrates how the role of the physician changes over time in response to the curved relationship between the predictability of a patient's outcome and the chance of returning to an acceptable quality of life. To translate this model into clinical practice, we propose a 5-step model for physicians with which they can (1) determine at which point the patient is on our model; (2) identify the cognitive factors and preferences for outcomes that affect the decision-making process of the patient and his or her family; (3) reflect on their own reaction to the decision at hand; (4) acknowledge how these factors can be addressed in conversation; and (5) guide the patient and his or her family in creating a plan of care. This model can help improve patient-physician communication and decision making so that complex and difficult decisions can be turned into ones that yield to medical expertise, good communication, and personal caring.