Maria J. Silveira

Advance Directives and Outcomes of Surrogate Decision Making Before Death

BACKGROUND Recent discussions about health care reform have raised questions regarding the value of advance directives. METHODS We used data from survey proxies in the Health and Retirement Study involving adults 60 years of age or older who had died between 2000 and 2006 to determine the prevalence of the need for decision making and lost decision-making capacity and to test the association between preferences documented in advance directives and outcomes of surrogate decision making. RESULTS Of 3746 subjects, 42.5% required decision making, of whom 70.3% lacked decision-making capacity and 67.6% of those subjects, in turn, had advance directives. Subjects who had living wills were more likely to want limited care (92.7%) or comfort care (96.2%) than all care possible (1.9%); 83.2% of subjects who requested limited care and 97.1% of subjects who requested comfort care received care consistent with their preferences. Among the 10 subjects who requested all care possible, only 5 received it; however, subjects who requested all care possible were far more likely to receive aggressive care as compared with those who did not request it (adjusted odds ratio, 22.62; 95% confidence interval [CI], 4.45 to 115.00). Subjects with living wills were less likely to receive all care possible (adjusted odds ratio, 0.33; 95% CI, 0.19 to 0.56) than were subjects without living wills. Subjects who had assigned a durable power of attorney for health care were less likely to die in a hospital (adjusted odds ratio, 0.72; 95% CI, 0.55 to 0.93) or receive all care possible (adjusted odds ratio, 0.54; 95% CI, 0.34 to 0.86) than were subjects who had not assigned a durable power of attorney for health care. CONCLUSIONS Between 2000 and 2006, many elderly Americans needed decision making near the end of life at a time when most lacked the capacity to make decisions. Patients who had prepared advance directives received care that was strongly associated with their preferences. These findings support the continued use of advance directives.

Family Influences on Self-Management Among Functionally Independent Adults with Diabetes or Heart Failure: Do Family Members Hinder As Much As They Help?

Objectives: Among functionally independent patients with diabetes or heart failure, we examined family member support and family-related barriers to self-care. We then identified patient characteristics associated with family support and family barriers and how each was associated with self-management adherence. Methods: Cross-sectional survey of 439 patients with diabetes or heart failure (74% response rate). Results: 75% of respondents reported supportive family involvement in self-care; however, 25% reported frequent family-related barriers to self-care. Women reported family support less often (64% v. 77%) and family barriers to self-care more often (30% v. 21%) than men. 78% of respondents reported involved family members nagged or criticized them about illness care. In multivariate models, low health literacy, partnered status and higher family function were associated with higher family support levels, while female gender, older age, higher education, and more depression symptoms were associated with family barriers to self-care. Family barriers were associated with lower disease care self-efficacy (p<0.01), and both barriers and family support were associated with patients’ self-management adherence (both p<0.05). Discussion: Family members are highly involved in the self-care of these higher functioning patients. Interventions should help patients with chronic illness overcome family barriers to self-care and help families use positive and effective support techniques.

The final month of life in patients with ALS

ObjectiveTo study the health care experiences and palliative care needs of patients with ALS in their final month of life. MethodsCaregivers of decedent patients with ALS completed a single survey focused on the final month of life. They reported the patients’ physical and emotional symptoms, preferences for end-of-life care, completion of advance directives, and preparation for death. The caregiver reported which life-sustaining treatments were administered, withheld, or withdrawn; whether the patient was enrolled in hospice; and their own satisfaction with the patient’s medical care. ResultsFifty caregivers completed the survey. Caregivers reported that the most common symptoms in the last month of life included difficulty communicating (62%), dyspnea (56%), insomnia (42%), and discomfort other than pain (48%). Pain was both frequent and severe. One-third of caregivers were dissatisfied with some aspect of symptom management. Caregivers reported an advance directive was completed by 88% of patients and the patients’ goals of care were honored by 88% of health care practitioners. Two-thirds of patients were enrolled in hospice. Compared to nonhospice patients, hospice patients were significantly more likely to: 1) die in their preferred location; 2) die outside the hospital; and 3) receive morphine. Most caregivers reported that their loved one was at peace, and prepared for and was accepting of death. ConclusionsCaregivers report that many patients with ALS still experience distressing physical symptoms in the last month of life, despite enrollment in hospice. Most patients with ALS, however, anticipate and plan for their deaths and have their wishes respected.

Engagement with automated patient monitoring and self-management support calls: experience with a thousand chronically ill patients.

Background:Patient self-care support via Interactive Voice Response (IVR) can improve disease management. However, little is known about the factors affecting program engagement. Methods:We compiled data on IVR program engagement for 1173 patients with: heart failure, depression, diabetes, or cancer who were followed for 28,962 person-weeks. Patients in programs for diabetes or depression (N=727) had the option of participating along with an informal caregiver who received electronic feedback based on the patient’s IVR assessments. Analyses focused on factors associated with completing weekly IVR calls. Results:Patients were on average 61 years old, 37% had at most a high school education, and 48% reported incomes of ⩽

Statins in the Last Six Months of Life: A Recognizable, Life-Limiting Condition Does Not Decrease their Use

30,000. Among patients given the option of participating with an informal caregiver, 65% chose to do so. Patients completed 83% of attempted IVR assessments, with rates higher for heart failure (90%) and cancer programs (90%) than for the diabetes (81%) or depression programs (71%) (P<0.001). Among patients in diabetes or depression programs, those opting to have feedback provided to an informal caregiver were more likely to complete assessments [adjusted odds ratio, 1.37; 95% confidence interval, 1.07–1.77]. Older patients had higher call completion rates, even among patients aged 75 years and older. Missed clinic appointments, prior hospitalizations, depression program participation, and poorer mental health were associated with lower completion rates. Conclusions:Patients with a variety of chronic conditions will complete IVR self-care support calls regularly. Risk factors for missed IVR calls overlap with those for missed appointments. Involvement of informal caregivers may significantly increase engagement.

The case for involving adult children outside of the household in the self-management support of older adults with chronic illnesses

BACKGROUND Some have advocated discontinuing statins in patients with life-limiting conditions. However, the extent of statin use at the end of life has yet to be described and whether statin prescribing may already be influenced by the presence of a recognizable, life-limiting condition is unknown. OBJECTIVE To measure the prevalence of statin use during the last 6 months of life and determine if statin prescribing varies according to the presence of a recognizable, life-limiting condition. DESIGN Matched, case-control trial nested within a retrospective, cohort study. SETTING/SUBJECTS From 3031 VISN 11 patients who died in FY2004, we identified 1584 (52%) receiving statins at least 6 months before death. Of those, we identified 337 cases with a recognizable, life-limiting condition and 1247 controls matched on number of comorbidities, age, and socioeconomic status. ANALYSES We used survival analysis to test the relationship between days without statins and the presence of a life limiting condition, while controlling for pills supplied and comorbidity score. RESULTS There was no significant difference in the time off statins between cases and controls even though the study was sufficiently powered to detect one. CONCLUSIONS These findings underscore a missed opportunity to reduce the therapeutic burden upon dying patients and limit health care spending.

Patient-caregiver concordance in symptom assessment and improvement in outcomes for patients undergoing cancer chemotherapy.

Objectives: This study sought to (1) identify barriers to spousal support for chronic illness self-care among community-dwelling older adults; and (2) describe the potential availability of self-care support from adult children living outside of the household. Methods: Nationally representative US sample of chronically ill adults aged 51+ were interviewed as part of the Health and Retirement Study (N = 14,862). Both participants and their spouses (when available) reported information about their health and functioning. Participants also reported information about their contact with adult children and the quality of those relationships. Results: More than one-third (38%) of chronically ill older adults in the US are unmarried; and when spouses are available, the majority of them have multiple chronic diseases and functional limitations. However, the vast majority of chronically ill older adults (93%, representing roughly 60 million Americans) have adult children, with half having children living over 10 miles away. Most respondents with children (78%) reported at least weekly telephone contact and that these relationships were positive. Roughly 19 million older chronically ill Americans have adult children living at a distance but none nearby; these children are in frequent telephone contact and respondents (including those with multiple chronic diseases) report that the relationships are positive. Discussion: As the gap between available health services for disease management and the need among community-dwelling patients continues to grow, adult children—including those living at a distance—represent an important resource for improving self-care support for people with chronic diseases.

Opportunity lost: end-of-life discussions in cancer patients who die in the hospital.

Objective: To measure the agreement between cancer patients’ and family caregivers’ perceptions of the patients’ symptom severity, and the association between changes in caregiver accuracy and changes in outcomes. Methods: Secondary analysis of baseline and 10-week follow-up data from 142 cancer patient/caregiver dyads. Patient/caregiver agreement about symptom burden was measured for the 8 most prevalent symptoms and overall. Bivariate analyses examined the patient and caregiver characteristics associated with caregivers who were overestimators, underestimators or accurate at baseline. We tested the relationship between change in caregiver accuracy and both caregiver behaviour (e.g. use of information, hours spent caregiving) and patient outcomes (e.g. total symptom severity and frequency). Results: At baseline, caregivers overestimated the severity of 17 out of 18 symptoms; 50% predicted mean symptom severity accurately. Accuracy worsened over time for 51%, stayed the same for 36%, and improved for 13%. While not statistically significant, caregivers whose accuracy improved over time had patients who reported greater declines in: symptom severity, number of symptoms, symptom interference, total symptom frequency and depression. In addition, these caregivers experienced greater reductions in their use of information and hours helping the patient. Discussion: Caregivers typically over-estimate cancer patients’ symptom burden and accuracy does not improve over time. Improving caregiver accuracy may boost the positive effects of cognitive behavioural interventions designed to improve cancer patients’ quality of life.

Distance From Home When Death Occurs: A Population-Based Study of Washington State, 1989–2002

BACKGROUND End-of-life discussions are associated with decreased use of life-sustaining treatments in patients dying of cancer in the outpatient setting, but little is known about discussions that take place during terminal hospitalizations. OBJECTIVES To determine the proportion of patients assessed by the clinical team to have decisional capacity on admission, how many of these patients participated or had a surrogate participate in a discussion about end-of-life care, and whether patient participation was associated with treatments received. DESIGN Retrospective review. SETTING Inpatient. PATIENTS Adult patients with advanced cancer who died in the hospital between January 1, 2004 and December 31, 2007. RESULTS Of the 145 inpatients meeting inclusion criteria, 115 patients (79%) were documented to have decisional capacity on admission. Among these patients, 46 (40%) were documented to lose decisional capacity prior to an end-of-life discussion and had the discussion held instead by a surrogate. Patients who had surrogate participation in the end-of-life discussions were more likely to receive mechanical ventilation (56.5% vs 23.2%, P < 0.01), artificial nutrition (45.7% vs 25.0%, P = 0.03), chemotherapy (39.1% vs 5.4%, P <0.01), and intensive care unit (ICU) treatment (56.5% vs 23.2%, P <0.01) compared to patients who participated in discussions. There was no difference between palliative treatments received. CONCLUSION The majority of patients with advanced cancer are considered to have decisional capacity at the time of their terminal hospitalization. Many lose decisional capacity before having an end-of-life discussion and have surrogate decision-makers participate in these discussions. These patients received more aggressive life-sustaining treatments prior to death and represent a missed opportunity to improve end-of-life care.

Antimicrobial Use at the End of Life Among Hospitalized Patients With Advanced Cancer

OBJECTIVE. For patients who die in hospitals, the regionalization of tertiary health care services may be increasing the home-to-hospital distance, particularly for younger patients whose care is especially regionalized and for whom access to and use of home hospice services remains limited. The objective of this study was to test the hypotheses that the distance from home at the time of death in a hospital has increased over time and is inversely related to the age of the dying patient. METHODS. A population-based case series was conducted in Washington State of all deaths of state residents from 1989 to 2002. The main outcome measure was driving distance between home residence and location at the time of death. RESULTS. The overall mean distance from home to the hospital where death occurred has increased by 1% annually. Children who died in hospitals were much farther from home than their adult counterparts: the mean distance was 37.4 km for neonates and 50.9 km for children who were aged 1 to 9 years, compared with 19.9 km for adults who were aged 60 to 79 years and 14.0 km for patients who were older than 79 years. Disparities of distance were even greater among patients who were at the 90th percentile for distance (85.6 km for neonates compared with 30.8 for patient who were older than 79 years). CONCLUSIONS. The distance between home residence and the hospital where death occurs is greatest for children and has increased over time. Both of these findings have implications for the design of local and regional pediatric end-of-life supportive care services.