Norman A. Desbiens

Advance directives for seriously ill hospitalized patients: Effectiveness with the patient self-determination act and the SUPPORT intervention

OBJECTIVE: To assess the effectiveness of written advance directives (ADs) in the care of seriously ill, hospitalized patients. In particular, to conduct an assessment after ADs were promoted by the Patient Self‐Determination Act (PSDA) and enhanced by the effort to improve decision‐making in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), focusing upon the impact of ADs on decision‐making about resuscitation.

Pain and satisfaction with pain control in seriously ill hospitalized adults: Findings from the SUPPORT research investigations

OBJECTIVES To evaluate the pain experience of seriously ill hospitalized patients and their satisfaction with control of pain during hospitalization. To understand the relationship of level of pain and dissatisfaction with pain control to demographic, psychological, and illness-related variables. DESIGN Prospective, cohort study. SETTING Five teaching hospitals. PATIENTS Patients for whom interviews were available about pain (n = 5,176) from a total of 9,105 patients in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). INTERVENTIONS None. MEASUREMENTS AND MAIN RESULTS Patients were interviewed after study enrollment about their experiences with pain. When patients could not be interviewed due to illness, we used surrogate (usually a family member) responses calibrated to patient responses (from the subset of interviews with both patient and surrogate responses). Ordinal logistic regression was used to study the association of variables with level of pain and satisfaction with its control. Nearly 50% of patients reported pain. Nearly 15% reported extremely severe pain or moderately severe pain occurring at least half of the time, and nearly 15% of those patients with pain were dissatisfied with its control. After adjustment for confounding variables, older and sicker patients reported less pain, while patients with more dependencies in activities of daily living, more comorbid conditions, more depression, more anxiety, and poor quality of life reported more pain. Patients with colon cancer reported more pain than patients in other disease categories. Levels of reported pain varied among the five hospitals and also by physician specialty. After adjustment for confounding variables, dissatisfaction with pain control was more likely among patients with more severe pain, greater anxiety, depression, and alteration of mental status, and lower reported income; dissatisfaction with pain control also varied among study hospitals and by physician specialty. CONCLUSIONS Pain is common among severely ill hospitalized patients. The most important variables associated with pain and satisfaction with pain control were patient demographics and those variables that reflected the acute illness. Pain and satisfaction with pain control varied significantly among study sites, even after adjustment for many potential confounders. Better pain management strategies are needed for patients with the serious and common illnesses studied in SUPPORT.

Do Advance Directives Provide Instructions That Direct Care

OBJECTIVE: To evaluate whether the lack of effect of advance directives (ADs) on decision‐making in SUPPORT might arise, in part, from the content of the actual documents.

The impact of serious illness on patients' families. SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment.

OBJECTIVE To examine the impact of illness on the families of seriously ill adults and to determine the correlates of adverse economic impact. DESIGN Data were collected during the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a prospective cohort study of outcomes, preferences, and decision making in seriously ill hospitalized adults and their families. SETTING Five tertiary care hospitals in the United States. PARTICIPANTS The 2661 seriously ill patients in nine diagnostic categories who survived their index hospitalization and were discharged home were eligible for this analysis. Surrogate and/or patient interviews about the impact of illness on the family were obtained for 2129 (80%) of these patients (mean age, 62 years; 43% women; 6-month survival, 75%). OUTCOME MEASURES Surrogates and patients were surveyed to determine the frequency of adverse caregiving and economic burdens. Multivariable analyses were performed to determine correlates of loss of family savings. RESULTS One third (34%) of patients required considerable caregiving assistance from a family member. In 20% of cases, a family member had to quit work or make another major life change to provide care for the patient. Loss of most or all of the family savings was reported by 31% of families, whereas 29% reported loss of the major source of income. Patient factors independently associated with loss of the familys savings on multivariable analysis included poor functional status (odds ratio [OR], 1.40; 95% confidence interval [CI], 1.10 to 1.78 for patients needing assistance with three or more activities of daily living), lower family income (OR, 1.74; 95% CI, 1.37 to 2.21 for those with annual incomes below

Dying with lung cancer or chronic obstructive pulmonary disease: Insights from SUPPORT

25,000), and young age (OR, 2.85; 95% CI, 2.13 to 3.82 for those younger than 45 years compared with those 65 years or older). CONCLUSIONS Many families of seriously ill patients experience severe caregiving and financial burdens. Families of younger, poorer, and more functionally dependent patients are most likely to report loss of most or all of the familys savings.

Family satisfaction with end-of-life care in seriously ill hospitalized adults.

CONTEXT: Many are calling for patients with advanced chronic obstructive pulmonary disease (COPD) to receive hospice care, but the traditional hospice model may be insufficient.

The Illusion of End-of-Life Resource Savings with Advance Directives

OBJECTIVE: To examine factors associated with family satisfaction with end‐of‐life care in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).

The Symptom Burden of Seriously Ill Hospitalized Patients

OBJECTIVE: Would increasing the documentation of advance directives (ADs) lead to a reduction in resource utilization? We examined this question by conducting three secondary analyses: (1) we tested for a change in resource use among those who died in the hospital at a time before and after an intervention that increased the documentation of ADs in the medical record; (2) we replicated analyses of published studies that reported an association of chart documentation of ADs and hospital resource use; and (3) we examined whether a potential explanation of the observed association is biased documentation of ADs among patients who have completed an AD.

Age-related differences in care preferences, treatment decisions, and clinical outcomes of seriously ill hospitalized adults: lessons from SUPPORT.

We studied symptom burden and associated factors in a cohort of 1582 seriously ill patients admitted at five tertiary care academic centers in the U.S. between June 1989 and June 1991 in the SUPPORT Study. Logistic regression was used to test the independent association of symptoms with demographic, psychological, chronic, and acute illness measures. Pain, dyspnea, anxiety, and depression caused the greatest symptom burden. The following symptoms accounted for 67.3% of all symptoms that were at least moderately severe at least half of the time: dyspnea (19.2%), pain (17.6%), pain/dyspnea (7.6%), anxiety (5.9%), depression (5.0%), anxiety/depression (4.4%), anxiety/depression/pain/dyspnea (3.9%), and nausea (3.7%). Hospital, male gender, disease category, more comorbidities, more dependencies in activities of daily living prior to illness, and poorer quality of life were associated with greater symptom burden. Seriously ill patients have a high symptom burden. Better strategies will be needed to control symptoms in these patients.

Pain and Suffering in Seriously Ill Hospitalized Patients

OBJECTIVES: To review previously published findings about how patient age influenced patterns of care for seriously ill patients enrolled in the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).