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.     

Correlates of Urinary Incontinence in Community‐Dwelling Older Latinos

The prevalence of urinary incontinence (UI) has varied in the literature and is reflective of the definition and sampling methodologies used, as well as the age, ethnicity, and sex being studied. The aim of the current study was to measure the prevalence and correlates of UI in a sample of 572 older Latinos participating in Caminemos, a trial of a behavioral intervention to increase walking. Participants completed an in‐person survey and physical performance measures. UI was measured using the International Consultation on Incontinence item: “How often do you leak urine?” Potential correlates of UI included sociodemographic variables, body mass index, smoking, physical activity, medical comorbidity, physical performance, activity of daily living (ADL) impairment, use of assistive ambulatory devices, health‐related quality of life (HRQoL), and depressive symptoms. The prevalence of UI in this sample was 26.9%. Women were more likely to report UI, as were those who were less physically active; used assistive ambulatory devices; and had depressive symptoms, greater medical comorbidity, worse physical performance, greater ADL impairment, worse cognitive function, and lower HRQoL. Multivariate logistic regression revealed that medical comorbidity was independently associated with higher rates of UI (odds ratio (OR)=1.66, 95% confidence interval (CI)=1.30–2.12), whereas better cognitive function (OR=0.73, 95% CI=0.57–0.93) and higher weighted physical activity scores (OR=0.77, 95% CI=0.60–0.98) were independently associated with lower rates of UI. UI is highly prevalent but not ubiquitous among community‐residing older Latinos, suggesting that UI is not an inevitable consequence of aging. Future studies should examine whether interventions that decrease comorbidity and cognitive decline and increase physical activity improve continence status.     

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.     

Using the Experiences of Bereaved Caregivers to Inform Patient- and Caregiver-centered Advance Care Planning

Background  Traditional approaches to advance care planning (ACP) have many limitations; new approaches are being developed with the goal of improving end-of-life care. Objective  To understand how the end-of-life care experiences of older patients and their caregivers can inform the development of new approaches to ACP. Design  Qualitative cross-sectional study. Participants  Caregivers of community-dwelling persons age ≥ 60 years who died with advanced cancer, chronic obstructive pulmonary disease, or heart failure during follow-up in a longitudinal study. Approach  In-depth interviews were conducted 6 months after the patient’s death with 64 caregivers. Interviews began with open-ended questions to encourage the caregiver to tell the story of the patient’s experiences at the end of life. Additional questions asked about how decisions were made, patient–caregiver, patient–clinician, and caregiver–clinician communication. Main Results  Although the experiences recounted by caregivers were highly individual, several common themes emerged from the interviews. These included the following: 1) the lack of availability of treatment options for certain patients, prompting patients and caregivers to consider broader end-of-life issues, 2) changes in preferences at the very end of an illness, 3) variability in patient and caregiver desire for and readiness to hear information about the patient’s illness, and 4) difficulties with patient–caregiver communication. Discussion  The experiences of older patients at the end of life and their caregivers support a form of ACP that includes a broader set of issues than treatment decision-making alone, recognizes the dynamic nature of preferences, and focuses on addressing barriers to patient–caregiver communication. Presented at the 2006 annual meeting of the American Geriatrics Society. Supported by grant PCC 02–192 from VA HSR&D, R01 AG19769 from the National Institute on Aging, and a Paul Beeson Physician Faculty Scholars Award. Dr. Fried is supported by K24 AG28443from the National Institute on Aging.     

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.     

Conceptual Challenges and Practical Approaches to Screening Capacity for Self‐Care and Protection in Vulnerable Older Adults

Identifying impairments in the capacity to make and execute decisions is critical to the assessment and remediation of elder self‐neglect. Few capacity assessment tools are available for use outside of healthcare settings, and none have been validated in the context of elder self‐neglect. Health and social services professionals are in need of validated tools to assess capacity for self‐care and self‐protection (SC&P) during initial evaluations of older adults with suspected self‐neglect syndrome. Currently, legal and medical declarations of incapacity and guardianship rely on clinical evaluations and instruments developed to assess only decision‐making capacity. This article first describes the conceptual and methodological challenges to assessing the capacity to make and execute decisions regarding safe and independent living. Second, the article describes the pragmatic obstacles to developing a screening tool for the capacity for SC&P. Finally, the article outlines the process for validation and field testing of the screening tool. Social services professionals can then use a valid and feasible screening tool during field assessments to screen for potential impairments in the capacity for SC&P in vulnerable older adults.     

Effect of a Disease‐Specific Planning Intervention on Surrogate Understanding of Patient Goals for Future Medical Treatment

OBJECTIVES: To determine whether a disease‐specific planning process can improve surrogate understanding of goals of patients with life‐limiting illnesses for future medical treatments. DESIGN: A multisite randomized controlled trial conducted between January 1, 2004 and July 31, 2007. SETTING: Six outpatient clinics of large community or university health systems in three Wisconsin cities. PARTICIPANTS: Competent, English‐speaking adults aged 18 and older with chronic congestive heart failure or chronic renal disease and their surrogate decision‐makers. INTERVENTION: Trained health professionals conducted a structured, patient‐centered interview intended to promote informed decision‐making and to result in the completion of a document clarifying the goals of the patient with regard to four disease‐specific health outcome situations and the degree of decision‐making latitude granted to the surrogate. MEASUREMENTS: Surrogate understanding of patient goals for care with regard to four expected, disease‐specific outcomes situations and of the degree of surrogate latitude in decision‐making. RESULTS: Three hundred thirteen patient–surrogate pairs completed the study. As measured according to kappa scores and in all four situations and in the degree of latitude, intervention group surrogates demonstrated a significantly higher degree of understanding of patient goals than control group surrogates. Intervention group kappa scores ranged from 0.61 to 0.78, whereas control group kappa scores ranged from 0.07 to 0.28. CONCLUSION: Surrogates in the intervention group had a significantly better understanding of patient goals and preferences than surrogates in the control group. This finding is the first step toward ensuring that patient goals for care are known and honored.     

Preferences of husbands and wives for outcomes of prostate cancer screening and treatment

OBJECTIVE: To explore the preferences of male primary care patients and their spouses for the outcomes of prostate cancer screening and treatment, and quality of life with metastatic prostate cancer. DESIGN: Cross-sectional design. SETTING: Primary care clinics in Galveston County, Texas. PATIENTS: One hundred sixty-eight couples in which the husband was a primary care patient and a candidate for prostate cancer screening. MEASUREMENTS AND MAIN RESULTS: Preferences were measured as utilities for treatment outcomes and quality of life with metastatic disease by the time trade-off method for the husband and the wife individually and then conjointly for the couple. For each health state considered, husbands associated lower utilities for the health states than did their wives. Couples' utilities fell between those of husbands and wives (all comparisons were significant at P <.01). For partial and complete impotence and mild-to-moderate incontinence, the median utility value for the wives was 1.0, indicating that most wives did not associate disutility with their husbands having to experience these treatment complications. CONCLUSIONS: Male primary care patients who are candidates for prostate cancer screening evaluate the outcomes of prostate cancer treatment and life with advanced prostate cancer as being far worse than do their wives. Because the choice between quantity and quality of life is a highly individualistic one, both the patient and his partner should be involved in making decisions about prostate cancer screening. J