Reflections on Hope and Its Implications for End‐of‐Life Care

Physicians caring for individuals with life‐altering, incurable illnesses often have a desire to convey a sense of hope while also helping their patients prepare for the end of life to minimize unnecessary suffering and grief. Unfortunately, in the United States, most people receive more‐aggressive treatments toward the end of life than studies would suggest that they desire. This reflects the challenging task of balancing optimism and realism, and how providing a false sense of hope for a cure for too long a time while avoiding advance care planning may contribute significantly to the problem. This article explores the interplay of hope and advance care planning, and suggests a need for excellent individualized communication in the setting of advanced cancer to improve end‐of‐life care.     

Opiniones: End‐of‐Life Care Preferences and Planning of Older Latinos

OBJECTIVES: To measure end‐of‐life (EOL) care preferences and advance care planning (ACP) in older Latinos and to examine the relationship between culture‐based attitudes and extent of ACP. DESIGN: Cross‐sectional interview. SETTING: Twenty‐two senior centers in greater Los Angeles. PARTICIPANTS: One hundred forty‐seven Latinos aged 60 and older. MEASUREMENTS: EOL care preferences, extent of ACP, attitudes regarding patient autonomy, family‐centered decision‐making, trust in healthcare providers, and health and sociodemographic characteristics. RESULTS: If seriously ill, 84% of participants would prefer medical care focused on comfort rather than care focused on extending life, yet 47% had never discussed such preferences with their family or doctor, and 77% had no advance directive. Most participants favored family‐centered decision making (64%) and limited patient autonomy (63%). Greater acculturation, education, and desire for autonomy were associated with having an advance directive (P‐values <.03). Controlling for sociodemographic characteristics, greater acculturation (adjusted odds ratio (AOR)=1.6, 95% confidence interval (CI)=1.1–2.4) and preferring greater autonomy (AOR=1.6, 95% CI=1.1–2.3) were independently associated with having an advance directive. CONCLUSIONS: The majority of older Latinos studied preferred less‐aggressive, comfort‐focused EOL care, yet few had documented or communicated this preference. This discrepancy places older Latinos at risk of receiving high‐intensity care inconsistent with their preferences.     

Advance Care Planning for Older Homeless‐Experienced Adults: Results from the Health Outcomes of People Experiencing Homelessness in Older Middle Age Study

Older homeless‐experienced adults have low engagement in advance care planning (ACP) despite high morbidity and mortality. We conducted a cross‐sectional analysis of a cohort of 350 homeless‐experienced adults aged 50 and older in Oakland, California. We assessed the prevalence of potential surrogate decision‐makers, ACP contemplation, discussions, and ACP documentation (surrogate designation, advance directives). We used multivariable logistic regression to examine factors associated with ACP discussions and documentation. The median age of the cohort was 59 (range 52–82), 75.2% were male, and 82.1% were black. Sixty‐one percent reported a potential surrogate, 21.5% had discussed ACP, and 19.0% reported ACP documentation. In multivariable models, having 1 to 5 confidants versus none (adjusted odds ratio (aOR)=5.8, 95% confidence interval (CI)=1.7–20.0), 3 or more chronic conditions versus none (aOR=2.3, 95% CI=0.9–5.6), and a recent primary care visit (aOR=2.1, 95% CI=1.0–4.4) were associated with higher odds of ACP discussions and each additional 5 years of homelessness (aOR=0.7, 95% CI=0.5—0.9) with lower odds. Having 1 to 5 confidants (aOR=5.0, 95% CI=1.4–17.5), being black (aOR=5.5, 95% CI=1.5–19.5), and having adequate versus limited literacy (aOR=7.0, 95% CI=1.5–32.4) were associated with higher odds of ACP documentation and illicit drug use (aOR=0.3, 95% CI=0.1–0.9) with lower odds. Although the majority of older homeless‐experienced adults have a potential surrogate, few have discussed or documented their ACP wishes; the odds of both were greater with larger social networks. Future interventions must be customized for individuals with limited social networks and address the instability of homelessness, health literacy, and the constraints of safety‐net healthcare settings.     

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.