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Importance: An important aspect of high-quality care is ensuring that treatments are in alignment with patient or surrogate decision-maker goals. Treatment discordant with patient goals has been shown to increase medical costs and prolong end-of-life difficulties., Objectives: To evaluate discordance between surrogate decision-maker goals of care and medical orders and treatments provided to hospitalized, incapacitated older patients., Design, Setting, and Participants: This prospective cohort study included 363 patient-surrogate dyads. Patients were 65 years or older and faced at least 1 major medical decision in the medical and medical intensive care unit services in 3 tertiary care hospitals in an urban Midwestern area. Data were collected from April 27, 2012, through July 10, 2015, and analyzed from October 5, 2018, to December 5, 2019., Main Outcomes and Measures: Each surrogate's preferred goal of care was determined via interview during initial hospitalization and 6 to 8 weeks after discharge. Surrogates were asked to select the goal of care for the patient from 3 options: comfort-focused care, life-sustaining treatment, or an intermediate option. To assess discordance, the preferred goal of care as determined by the surrogate was compared with data from medical record review outlining the medical treatment received during the target hospitalization., Results: A total of 363 dyads consisting of patients (223 women [61.4%]; mean [SD] age, 81.8 [8.3] years) and their surrogates (257 women [70.8%]; mean [SD] age, 58.3 [11.2] years) were included in the analysis. One hundred sixty-nine patients (46.6%) received at least 1 medical treatment discordant from their surrogate's identified goals of care. The most common type of discordance involved full-code orders for patients with a goal of comfort (n = 41) or an intermediate option (n = 93). More frequent in-person contact between surrogate and patient (adjusted odds ratio [AOR], 0.43; 95% CI, 0.23-0.82), patient residence in an institution (AOR, 0.44; 95% CI, 0.23-0.82), and surrogate-rated quality of communication (AOR, 0.98; 95% CI, 0.96-0.99) were associated with lower discordance. Surrogate marital status (AOR for single vs married, 1.92; 95% CI, 1.01-3.66), number of family members involved in decisions (AOR for ≥2 vs 0-1, 1.84; 95% CI, 1.05-3.21), and religious affiliation (AOR for none vs any, 4.87; 95% CI, 1.12-21.09) were associated with higher discordance., Conclusions and Relevance: This study found that discordance between surrogate goals of care and medical treatments for hospitalized, incapacitated patients was common. Communication quality is a modifiable factor associated with discordance that may be an avenue for future interventions.

Background: When working with surrogate decision-makers, physicians often encounter ethical challenges that may cause moral distress which can have negative consequences for physicians., Objective: To determine frequency of and factors associated with physicians' moral distress caring for patients requiring a surrogate., Design: Prospective survey., Participants: Physicians (n = 154) caring for patients aged 65 years and older and their surrogate decision-makers (n = 362 patient/surrogate dyads). Patients were admitted to medicine or medical intensive care services, lacked decisional capacity and had an identified surrogate., Main Measures: Moral distress thermometer., Key Results: Physicians experienced moral distress in the care of 152 of 362 patients (42.0%). In analyses adjusted for physician, patient, and surrogate characteristics, physician/surrogate discordance in preferences for the plan of care was not significantly associated with moral distress. Physicians were more likely to experience moral distress when caring for older patients (1.06, 1.02-1.10), and facing a decision about life-sustaining treatment (3.58, 1.54-8.32). Physicians were less likely to experience moral distress when caring for patients residing in a nursing home (0.40, 0.23-0.69), patients who previously discussed care preferences (0.56, 0.35-0.90), and higher surrogate ratings of emotional support from clinicians (0.94, 0.89-0.99). Physicians' internal discordance when they prefer a more comfort-focused plan than the patient is receiving was associated with significantly higher moral distress (2.22, 1.33-3.70) after adjusting for patient, surrogate, and physician characteristics., Conclusions: Physician moral distress occurs more frequently when the physician is male, the patient is older or requires decisions about life-sustaining treatments. These findings may help target interventions to support physicians. Prior discussions about patient wishes is associated with lower distress and may be a target for patient-centered interventions.

Purpose Patients with advanced cancer (ACPs) participating in phase I clinical trials inadequately understand many elements of informed consent (IC); however, the prevalence and impact of cognitive impairment has not been described. Patients and Methods ACPs enrolled onto phase I trials underwent neuropsychological assessment to evaluate cognitive functioning (CF) covering the following domains: memory (Hopkins Verbal Learning Test), executive functioning (Trail Making Test B), language (Boston Naming Test-Short Version and Controlled Oral Word Association Test), attention (Trail Making Test A and Wechsler Adult Intelligenence Scale-IV Digit Span), comprehension (Wechsler Adult Intelligence Scale-IV), and quality of life (Functional Assessment of Cancer Therapy-Cognitive Function). Structured interviews evaluated IC and decisional capacity. Psychological measures included distress (Hospital Anxiety Depression Scale) and depression (Beck Depression Inventory-II). Results One hundred eighteen ACPs on phase I trials were evaluated, with CF ranging from mild impairment to superior performance. Only 45% of ACPs recalled physician disclosure of the phase I trial purpose. The 50% of ACPs who correctly identified the phase I research purpose had greater CF compared with ACPs who did not, as revealed by the mean T scores for memory (37.2 ± 5.6 v 32.5 ± 5.1, respectively; P = .001), attention (29 ± 2.7 v 26.9 ± 2.4, respectively; P < .001), visual attention (35.2 ± 6.6 v 31.5 ± 6.2, respectively; P = .001), and executive function (38.9 ± 7.5 v 34 ± 7.1, respectively; P < .001). Older ACPs (≥ 60 years) were less likely to recall physician disclosure of phase I purpose than younger ACPs (30% v 70%, respectively; P = .02) and had measurable deficits in total memory (34.2 ± 5.0 v 37.3 ± 5.6, respectively; P = .002), attention (24.5 ± 2.6 v 28 ± 2.8, respectively; P < .001), and executive function (32.8 ± 7.3 v 36.4 ± 7.6, respectively; P = .01). Older ACPs, compared with younger ACPs, also had greater depression scores (10.6 ± 9.2 v 8.1 ± 5.2, respectively; P = .03) and lower quality-of-life scores (152 ± 29.6 v 167 ± 20, respectively; P = .03). After adjustment by age, no psychological or neuropsychological variable was further significantly associated with likelihood of purpose identification. Conclusion CF seems to play a role in ACP recall and comprehension of IC for early-phase clinical trials, especially among older ACPs.

Importance: Hospitalized older adults often lack decisional capacity, but outside of the intensive care unit and end-of-life care settings, little is known about the frequency of decision making by family members or other surrogates or its implications for hospital care., Objective: To describe the scope of surrogate decision making, the hospital course, and outcomes for older adults., Design, Setting, and Participants: Prospective, observational study conducted in medicine and medical intensive care unit services of 2 hospitals in 1 Midwestern city in 1083 hospitalized older adults identified by their physicians as requiring major medical decisions., Main Outcomes and Measures: Clinical characteristics, hospital outcomes, nature of major medical decisions, and surrogate involvement., Results: According to physician reports, at 48 hours of hospitalization, 47.4% (95% CI, 44.4%-50.4%) of older adults required at least some surrogate involvement, including 23.0% (20.6%-25.6%) with all decisions made by a surrogate. Among patients who required a surrogate for at least 1 decision within 48 hours, 57.2% required decisions about life-sustaining care (mostly addressing code status), 48.6% about procedures and operations, and 46.9% about discharge planning. Patients who needed a surrogate experienced a more complex hospital course with greater use of ventilators (2.5% of patients who made decisions and 13.2% of patients who required any surrogate decisions; P < .001), artificial nutrition (1.7% of patients and 14.4% of surrogates; P < .001), and length of stay (median, 6 days for patients and 7 days for surrogates; P < .001). They were more likely to be discharged to an extended-care facility (21.2% with patient decisions and 40.9% with surrogate decisions; P < .001) and had higher hospital mortality (0.0% patients and 5.9% surrogates; P < .001). Most surrogates were daughters (58.9%), sons (25.0%), or spouses (20.6%). Overall, only 7.4% had a living will and 25.0% had a health care representative document in the medical record., Conclusions and Relevance: Surrogate decision making occurs for nearly half of hospitalized older adults and includes both complete decision making by the surrogate and joint decision making by the patient and surrogate. Surrogates commonly face a broad range of decisions in the intensive care unit and the hospital ward setting. Hospital functions should be redesigned to account for the large and growing role of surrogates, supporting them as they make health care decisions.

Objectives: To describe communication experiences of surrogates who had recently made a major medical decision for a hospitalized older adult., Design: Semistructured interviews about a recent hospitalization., Setting: Two hospitals affiliated with one large medical school: an urban public hospital and a university-affiliated tertiary referral hospital., Participants: Surrogates were eligible if they had recently made a major medical decision for a hospitalized individual aged 65 and older and were available for an interview within 1 month (2-5 months if the patient died)., Measurements: Interviews were audio-recorded, transcribed, and analyzed using methods of grounded theory., Results: Thirty-five surrogates were interviewed (80% female, 44% white, 56% African American). Three primary themes emerged. First, it was found that the nature of surrogate-clinician relationships was best characterized as a relationship with a "team" of clinicians rather than individual clinicians because of frequent staff changes and multiple clinicians. Second, surrogates reported their communication needs, including frequent communication, information, and emotional support. Surrogates valued communication from any member of the clinical team, including nurses, social workers, and physicians. Third, surrogates described trust and mistrust, which were formed largely through surrogates' communication experiences., Conclusion: In the hospital, surrogates form relationships with a "team" of clinicians rather than with individuals, yet effective communication and expressions of emotional support frequently occur, which surrogates value highly. Future interventions should focus on meeting surrogates' needs for frequent communication and high levels of information and emotional support., (© 2012, Copyright the Authors Journal compilation © 2012, The American Geriatrics Society.)

Objective: To build a conceptual model of the role of communication in decision making, based on literature from medicine, communication studies and medical ethics., Methods: We proposed a model and described each construct in detail. We review what is known about interpersonal and patient-physician communication, described literature about surrogate-clinician communication, and discussed implications for our developing model., Results: The communication literature proposes two major elements of interpersonal communication: information processing and relationship building. These elements are composed of constructs such as information disclosure and emotional support that are likely to be relevant to decision making. We propose these elements of communication impact decision making, which in turn affects outcomes for both patients and surrogates. Decision making quality may also mediate the relationship between communication and outcomes., Conclusion: Although many elements of the model have been studied in relation to patient-clinician communication, there is limited data about surrogate decision making. There is evidence of high surrogate distress associated with decision making that may be alleviated by communication-focused interventions. More research is needed to test the relationships proposed in the model., Practice Implications: Good communication with surrogates may improve both the quality of medical decisions and outcomes for the patient and surrogate., (Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.)

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., (© 2011, Copyright the Authors. Journal compilation © 2011, The American Geriatrics Society.)

Objectives: To compare assessments of the decisional capacity of cognitively impaired patients by research assistants (RAs) and by family caregiver/proxies and to determine whether either or both groups judge capacity differently depending on the specific (hypothetical) research enrollment decision being made., Design: Cross-sectional., Setting: Three clinics, one each in Ohio, Kentucky, and Illinois., Participants: One hundred forty-nine patients with established dementia diagnoses and their caregiver/proxies., Measurements: As part of a longer interview, patients were asked about future enrollment in five hypothetical research projects with varying risks and benefits. After patients reported each decision and reasons for that decision, RAs (using Applebaum and Grisso's four standards) indicated whether the patients were competent to make that decision on their own. In separate interviews, caregiver/proxies were asked for a similar appraisal based on life experience with the patient. RA and proxy judgments were compared., Results: Capacity judgments by RAs and by caregiver/proxies differed according to specific project for most patients. Agreement between RA and caregiver/proxy judgments varied according to project, but agreement was only fair when tested using kappa (range in data 0.21-0.39). Caregiver/proxies appraised 50 patients as competent for all decisions, and RAs assessed 47 as so. Of these, only 24 were the same patients., Conclusion: If capacity were assessed anew for each enrollment decision, more potential participants could maintain authority in making those decisions.

Background: Chronic kidney disease (CKD) is a growing public health concern that overwhelmingly affects older adults. National guidelines have called for earlier referral of CKD patients, but it is unclear how these should apply to older adults., Objective: This scholarly review aims to explore the current literature about upstream referral decisions for CKD within the context of decisions about initiation of dialysis and general referral decisions. The authors propose a model for understanding the referral process and discuss future directions for research to guide decision making for older patients with CKD., Results: While age has been shown to be influential in decisions to refer patients for dialysis and other medical therapies, the role of other patient factors such as competing medical co-morbidities, functional loss, or cognitive impairment in the decision making of physicians has been less well elucidated, particularly for CKD., Conclusions: More information is needed on the decision-making behavior of physicians for upstream referral decisions like those being advocated for CKD. Exploring the role of geriatric factors like cognitive and functional status may help facilitate more appropriate use of resources and improve patient outcomes.

Objectives: To evaluate a research advance directive for persons with established dementia diagnoses and their family caregivers or proxies., Design: Prospective randomized, controlled trial., Setting: Three clinics, one each in Ohio, Kentucky, and Illinois., Participants: At the end of separate interviews about enrollment choices in five types of hypothetical research projects, 149 persons with established dementia diagnoses and their family proxies were randomized to jointly complete the Planning Ahead Together (PAT) document, a research advance directive (n=69) or to remain in the control group (n=80)., Intervention: The directive was assessed at two points: immediately after sample members received naturally occurring invitations to participate in other studies and again 2 years after initial enrollment., Measurements: Personal enrollment rates, reported ease of enrollment decision for patients and proxies, and proxy comfort were compared between the experimental and control groups., Results: Forty-one dyads were reinterviewed immediately after consent discussions for other trials. Forty-seven patients and 106 proxies were interviewed at 2-year follow-up. There was no evidence immediately after a trial enrollment opportunity or in the follow-up interview that the research advance directive (PAT) assisted patients or proxies. Enrollment rates, decision ease, and proxy comfort and certainty were similar in the PAT and control groups., Conclusion: Patient and proxy experience making hypothetical decisions in the interview may have affected enrollment decisions by the PAT and control groups. Although the low number of recruitment attempts and the natural attrition of the geriatric population limit conclusions about effectiveness that may be drawn from this unique data set, the feasibility of a research advance directive is clearly demonstrated.

Objective: To examine one model of research advance directive as a possible way to reduce the mismatch between patient and proxy choices and also to learn more about how patients with mild to moderate dementia may want to keep decision making or cede it to their proxies in the future., Methods: Separate interviews were conducted with 149 dyads of dementia patients and family proxies about future enrollment in five types of research. Subsequent joint interviews were conducted with 69 of those dyads to discuss their separately articulated decisions and ask whether the patient prefers future enrollment decisions to be made as he or she directs today or as the proxy deems best in the future., Results: Patients chose to cede future decision making to their proxies in 82.9% of the trials. Patients ceded decisions to their proxies in 80.7% of those trials about which the dyad had given opposite answers (n = 74, 49.7%). Patients who had expressed discomfort about the prospect of the proxy making an enrollment decision in a trial (n = 49, 32.9%) ceded decision making to their proxies in 45.7% of those trials., Conclusions: Both patients and proxies were willing to discuss future research enrollment in the context of an advance directive for research. Such a document may be helpful to proxies and researchers in the future to judge the types of research and associated risks patients are willing to enroll in. Although most patients willingly cede future decisions to their proxies, a sizeable minority do not wish to do so.

Deliberative bodies have recommended additional protections for persons with dementia included in clinical trials. This survey of experienced dementia researchers revealed that 45 to 64% considered that specific ones of these recommendations would increase subject protection, and 40 to 86% considered they would make research less feasible. The real tradeoff between protection and difficulty in conducting research on devastating illnesses needs to be confronted when new regulations in this area are debated.

Physicians increasingly are called on to provide primary care for the growing population of people with Alzheimer-type dementia. However, little attention has been paid to the care of nondementia illnesses in this group of patients. To illustrate how presence of dementia can alter the risk-benefit ratio of treatment of a common medical problem, we present a case study in which a patient with dementia developed disastrous adverse effects to a drug commonly used to treat osteoporosis. This case and 2 composite vignettes illuminate how presence of dementia should influence the decision-making process for treatment of nondementia illnesses. We address issues such as decreased decision-making capacity, problems with reporting adverse effects, decreased cognition leading to problems with treatment adherence, and the role of screening and basic questions about acceptable burdens of treatments in patients with limited prognosis. We suggest ways to improve communication with patients with dementia in an effort to minimize complications and improve care, as well as policy changes to include patients with dementia in clinical trials. JAMA. 2000;283:3230-3235

Objective: The Health Care Surrogate Act (HCSA) in Illinois has been proposed as a model for state laws naming surrogate medical decision-makers for those without advance directives (ADs). Our objective was to determine if the HCSA identifies the same surrogate as older persons would choose for themselves. If not, is the discrepancy between legally identified surrogate and preferred surrogate troublesome to respondents? Because it is documented that black Americans have a variety of family structures, some of which may not be reflected in the HCSA list, we also wished to determine if discrepancies between surrogates named by the law and those desired by patients are associated with black or white race., Design, Setting and Participants: A convenience sample of 144 patients aged 65 and older, without cognitive impairment, was interviewed at the geriatrics clinic of an academic medical center., Main Outcome Measures: Respondents without ADs who had a different stated choice for surrogate medical decision-maker than the surrogate defined by the Illinois HCSA, based on their existing family., Results: Twenty-six percent of respondents without ADs chose a surrogate that differed from the surrogate defined by the HCSA. However, 67% of those with a different choice for surrogate than defined by law were not troubled by the discrepancy. The proportion of black subjects (25%) and white subjects (31%) who had surrogate discrepancies was not significantly different (P = .6)., Conclusion: Because the Illinois HCSA named surrogates who would be agreeable to the majority of our respondents, it appears that it may be a useful model for state surrogacy laws.

There are no simple solutions to difficult ethical problems. Advance directives, however, offer a way to help prevent ethical dilemmas from occurring in the care of older cancer patients. Studies show that there is overwhelming support from both older patients and physicians for advance treatment planning through the use of living wills, durable powers of attorney for health care, and less formal means. Despite this support, few physicians and patients discuss advance directives. This paper discusses potential barriers to this dialogue and suggests specific ways to incorporate advance directive into routine cancer care of older patients. The Patient Self-Determination Act of 1990 represents additional pressure from society on the medical profession to carry out advance directive discussions.