Advance directives and intensity of care delivered to hospitalized older adults at the end-of-life

BackgroundOlder adults prefer comfort over life-sustaining care. Decreased intensity of care is associated with improved quality of life at the end-of-life (EOL).ObjectivesThis study explored the association between advance directives (ADs) and intensity of care in the acute care setting at the EOL for older adults.MethodsA retrospective, correlational study of older adult decedents (N = 496) was conducted at an academic medical center. Regression analyses explored the association between ADs and intensity of care.ResultsAdvance directives were not independently predictive of aggressive care but were independently associated with referrals to palliative care and hospice; however, effect sizes were small, and the timing of referrals was late.ConclusionThe ineffectiveness of ADs to reduce aggressive care or promote timely referrals to palliative and hospice services, emphasizes persistent inadequacies related to EOL care. Research is needed to understand if this failure is provider-driven or a flaw in the documents themselves.     

Impact of a Formal Advance Care Planning Program on End-of-Life Care for Patients With Heart Failure: Results From a Randomized Controlled Trial

BackgroundThere is no evidence on effectiveness of advance care planning (ACP) among patients with heart failure (HF). We examined the effect of an ACP program in facilitating end of life (EOL) care consistent with the preferences of patients with HF (primary aim), and on their decisional conflict, discussion with surrogates, illness understanding, anxiety, depression, and quality of life (secondary aims).MethodsWe randomized 282 patients with HF to receive ACP (n=93) or usual care (control arm, n=189). Primary outcomes were assessed among deceased (n=89) and secondary outcomes from baseline and 6 follow-ups conducted every 4 months.ResultsDeceased patients in the ACP arm were no more likely than those in control arm to have wishes followed for EOL treatments (ACP: 35%, Control: 44%; P= .47), or place of death (ACP: 52%, Control: 51%; P = .1.00). A higher proportion in the ACP arm had wishes followed for cardiopulmonary resuscitation (ACP: 83%, Control: 62%; P = .12). At first follow-up, patients with ACP had lower decisional conflict (β = −10.8, P< .01) and were more likely to discuss preferences with surrogates (β = 1.3, P = .04). ACP did not influence other outcomes.ConclusionThis trial did not confirm that our ACP program was effective in facilitating EOL care consistent with patient preferences. The program led to short-term improvements in the decision-making.     

Sexuality and Aging:

Previous research has been conducted regarding preferences of physicians for life-sustaining treatments for themselves, but there is a dearth of data on personal use of advance directives (ADs) by geriatricians specifically. Using a phone survey, we contacted all graduates of the geriatric fellowship program to assess their personal use of advance directives and their personal preferences for life-sustaining treatment. Of the 124 living graduates of the Parker Jewish Institute for Health Care and Rehabilitation, 70 agreed to participate. One third of respondents had established ADs for themselves, with higher rates in women than men (p = .054). Older geriatricians were significantly more likely to have advance directives (exact trend test yields, p < .0001). In general, respondents did not inform their health care providers about their desires for end-of-life care. This study revealed that the majority of fellowship-trained geriatricians did not formally establish advance directives for themselves. Further research is needed to determine whether physicians who establish advance directives for themselves are more likely to encourage their patients to do so.     

Family Caregiving for Patients With Heart Failure: Types of Care Provided and Gender Differences

BackgroundKnowledge about the potential burden for family caregivers related to the care of patients with heart failure (HF) is limited. The aims of the study were to compare the kind and amount of care provided by partners of HF patients and partners of healthy individuals and to examine the associations between gender and the performance of caregiving tasks.Methods and ResultsCaregiving tasks performed by 338 partners of HF patients were compared with those performed by 1202 partners of healthy individuals. Partners (age 70 ± 9, 76% female) of HF patients were more likely to provide personal care compared with partners (age 65 ± 7, 66% female) of healthy individuals after controlling for their age. However, the magnitude of the odds ratios (OR) differed by gender of partners (OR for male 6.7; 95% confidence interval [CI] 3.9–11.4; OR for female 3.7; 95% CI 2.7–5.1). Partners of HF patients were more likely to provide emotional care than partners of healthy individuals, controlling for age and gender (OR 2.4; 95% CI 1.5–3.6). Male partners of HF patients were more likely to provide personal care compared to female partners of HF patients (OR 1.9; 95% CI 1.1–3.2).ConclusionsThe care performed by partners of HF patients is above and beyond normal spousal assistance. The study underscores the crucial role of family caregivers in the care of HF patients and encourages health care providers to address the needs of both HF patients and their caregivers.     

Utilization of hospice and predicted mortality risk among older patients hospitalized with heart failure: findings from GWTG-HF

BackgroundGuidelines recommend hospice care as a treatment option for end-stage heart failure (HF) patients. Little is known regarding utilization of hospice care in a contemporary cohort of patients hospitalized with HF and how this may vary by estimated mortality risk.MethodsWe analyzed HF patients ≥65 years (n = 58,330) from 214 hospitals participating in the Get With the Guidelines–HF program. Univariate analysis comparing patients discharged to hospice versus other patients was performed. Hospice utilization was evaluated for deciles of estimated 90-day mortality risk using a validated model. Multivariate analysis using admission patient and hospital characteristics was also performed to determine factors associated with hospice discharge.ResultsThere were 1,442 patients discharged to hospice, and rates of referral varied widely by hospital (interquartile range 0–3.7%) as shown in the univariate analysis. Patients discharged to hospice were significantly older and more often white, had lower left ventricular ejection fraction, higher B-type natriuretic peptide, and lower systolic blood pressure on admission. Utilization rates for each decile of 90-day estimated mortality risk ranged from 0.3% to 8.6%. Multivariable analysis found that factors associated with hospice utilization included increased age, low systolic blood pressure on admission, and increased blood urea nitrogen.ConclusionsHospice utilization remains low among HF patients, even those with the highest predicted risk of death.     

Discrepancies in preferences regarding the care of terminal-phase pneumonia in elderly patients among patients,families, and doctors: A multicenter questionnaire survey in nagasaki,Japan

BackgroundBefore advance care planning, it is essential to understand the differences in preferences for medical care of terminal-phase pneumonia in elderly patients among the patients, their families, and their doctors. This study aimed to clarify these differences and investigate the actual care provided to elderly patients with pneumonia in nursing hospitals.MethodsMulticenter questionnaire surveys of 179 patients admitted to nursing homes and long-term care beds in hospitals of three healthcare corporations, their families, and their physicians were conducted between January and August 2018. The questionnaires mainly assessed preferences for life-prolonging medical care procedures, including antibiotic treatments, in terminal-phase pneumonia. A follow-up survey regarding the prognosis and the actual care provided by the physicians was conducted 1 year after the first survey.ResultsOnly 16.2% of the patients had sufficient prior discussions with their families about their care. More families preferred cardiac massage, intubation, and tracheostomy, while fewer families preferred peripheral intravenous fluids or antibiotics than physicians. A total of 30 patients’ families (16.7%) answered to withhold antibiotic treatment, while all physicians supported antibiotic administration. The only significant factor related to withholding antibiotics was high age (P = 0.0057). The follow-up survey administered to the doctors revealed that 49 patients (35.7%) had died within one year. Of the 137 patients, 54 patients (39.4%) had developed pneumonia during this observation period and all were treated with antibiotics.ConclusionsThis study revealed large discrepancies between patients/families and physicians regarding preferences for care. Medical staff should make efforts to fill the gap by ensuring advance care planning.     

Patient knowledge and physician predictions of treatment preferences after discussion of advance directives

OBJECTIVE: To determine patient knowledge about life-sustaining treatments and physician understanding of patient preferences for proxies and treatments after outpatient discussions about advance directives. DESIGN: Cross-sectional interview-based and questionnaire-based survey. SETTING: Two university general internal medicine practices, two Department of Veterans Affairs general internal medicine practices, and one university-based geriatrics practice, in two different cities. PATIENTS: Fifty-six patients of primary care internists. INTERVENTION: Physicians discussed “advance directives” (ADs) with one randomly selected patient during an outpatient visit. MEASUREMENTS AND MAIN RESULTS: After the discussions, physicians identified the patient’s proxy and predicted the patient’s preferences for treatment in 20 scenarios. Patients provided treatment preferences in the 20 scenarios, the name of their preferred surrogate decision maker, and their understanding of cardiopulmonary resuscitation and mechanical ventilation. Of the 39 patients who discussed resuscitation, 43% were able to identify two important characteristics; 26% identified none; 66% did not know that most patients need mechanical ventilation after undergoing resuscitation. None of the 43 patients who had a discussion about mechanical ventilation had a good understanding of it; 67% did not know that patients generally cannot talk while on ventilators; 46% expressed serious misconceptions about ventilators. There was poor agreement between physicians and their patients regarding treatment preferences in 18 of 20 scenarios (κ ?0.04 to 0.31). Physicians correctly identified the proxy 89% of the time (κ 0.78). CONCLUSIONS: Patients leave routine AD discussions with serious misconceptions about life-sustaining treatments. Physicians are unable to predict treatment preferences but do learn about patients’ preferences for surrogate decision makers.     

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.     

Shaping End-of-Life Care: Behavioral Economics and Advance Directives

A central but unmet challenge in health care delivery is to increase the probability that the care patients receive near the end of their life is consistent with their goals, values, and preferences. Providing patient-centered care at the end of life is challenging. In their final days, nearly a third of older Americans need critical decisions made regarding the use or nonuse of life-sustaining interventions, but the patients themselves cannot participate in those decisions. Although this observation highlights the promise of advance directives (ADs), to date ADs have not delivered on this promise. This article provides a new framework, based in behavioral economic theory, that may explain the current failures of ADs and point to potential solutions. Specifically, it discusses how five well-described cognitive biases that pervade human decision making (affective forecasting errors, optimism bias, present-biased preferences, focusing effects, and default options) may account for deficiencies in the uptake, efficacy, and patient-centeredness of ADs. The text suggests potential solutions in need of evaluation, discusses metrics for assessing these interventions' benefits, and considers alternatives to the approaches advocated.     

Caregivers' Perceived Roles in Caring for Patients With Heart Failure: What Do Clinicians Need to Know?

BackgroundPoor self-management of heart failure (HF) is an essential contributor to poor outcomes. Caregivers are involved in the care of HF patients, but caregiver interventions intended to improve the outcomes of patients have been largely unsuccessful. Improved knowledge of caregivers' desired roles in care may improve future interventions.Methods and ResultsThis qualitative study of 20 caregivers of HF patients recruited from an academic medical center used a general inductive approach, with insights from role theory, to analyze the data. Caregivers perceived themselves as health care managers and care plan enforcers, advocates for quality of life, and experts in the lived experience of HF at home. However, they encountered role strain (expectations of role exceed ability to perform role) and role conflict (incompatible or contradictory roles) when it seemed that these roles were incompatible with those that they felt the health care system saw them in. This resulted in expressions of anger and distrust towards the health care system.ConclusionsClinicians caring for patients with HF can seek to better empower and enable this care. Involving caregivers in disease management research and assessing their roles before intervention may hold promise for enabling and empowering caregivers to improve outcomes of HF patients.     

Attitudes and preferences of Korean-American older adults and caregivers on end-of-life care

A growing body of literature suggests that diverse attitudes toward the end of life exist across and within ethnic minority groups. This focus-group pilot study examined social and cultural factors influencing views of Korean-American older adults and caregivers on advance care planning and hospice care. A total of 20 older adults and 16 caregivers in west central Florida participated in one of four focus groups. This study found diverse attitudes among Korean Americans toward end-of-life care and cultural and structural barriers to advance care planning and hospice use. Older adults and caregivers both expressed a lack of knowledge about advance care planning and hospice and agreed that the family would make the final decision about the end-of-life care, while acknowledging the challenge of initiating communications about treatment preferences. They interpreted the Korean value of filial piety to support both curative and palliative treatment. The traditional norm of home death and importance of physician communication influenced preferences for hospice and advance care planning, respectively. Future outreach and education efforts should include development of culturally sensitive educational and communication tools and collaboration with ethnic community organizations and healthcare providers in the dissemination and education of these instruments.     

Advance directives: ambulatory patients' knowledge and perspectives

Background

There is a growing awareness of the need for discussion of advance directives (ADs) in the ambulatory setting, but rates of completion remain low. Clarification of patients’ perceptions and knowledge would help in designing future strategies.

Methods

This is a prospective study of adult ambulatory patients at four academic internal medicine clinical sites at the University at Buffalo during a 6-week period in 2004. We obtained data using a standard instrument administered by a research assistant. The data included demographic variables, patients’ awareness of and familiarity with specific ADs, and whether the patient had any ADs. Patients also were asked about attitudes concerning the appropriateness of ADs. We performed multivariate logistic regression on the variables.

Results

Of 508 patients, 86.2% were unfamiliar with the term “advance directives,” but 93.5% were familiar with one or more specific kinds of ADs. Some 43.1% of patients claimed to have completed an AD, but of those who said they had, only 25% thought their provider had a copy. Multivariate logistic regression demonstrated significant correlation between having completed an AD and age, reading ability, and educational level (all P < .001).

Conclusions

A large number of patients in an ambulatory internal medicine practice knew about ADs and believed they had completed such documents, but these documents were often not in the chart. Many patients believe discussions of ADs are not appropriate for them. A better understanding of this phenomenon will help in promoting effective advance care planning.     

A pilot randomized clinical trial of a teamwork intervention for heart failure care dyads

BackgroundDyadic heart failure (HF) management can improve outcomes for patients and caregivers and can be enhanced through eHealth interventions.ObjectiveTo evaluate the feasibility, acceptability, and preliminary efficacy of an eHealth dyadic teamwork intervention, compared to an attention control condition.MethodsWe recruited 29 HF patient-caregiver dyads from inpatient units and randomized dyads to an intervention or a control group. We calculated enrollment and retention rates, described acceptability using interview and questionnaire data, and computed intervention effect sizes.Results37% of eligible dyads agreed to participate and 93% of randomized participants completed follow-up questionnaires. Participants found both study conditions to be acceptable. Between-group effect sizes suggested that the intervention led to improvements in relationship quality, self-efficacy, and quality of life for patients and caregivers.ConclusionsDyadic recruitment from acute care settings is challenging. Findings provide initial evidence that our intervention can contribute to better health outcomes for HF dyads.     

Heart to Heart Discussions: Characterizing Goals of Care Conversations for Advanced Heart Failure Patients Initiating Palliative Inotropes

BackgroundGuidelines recommend goals of care conversations (GOCC) and specialty palliative care at the time of initiation of palliative inotropes for patients with advanced heart failure. The extent to which GOCC are occurring, the content of the GOCC, and the frequency of palliative care involvement is unknown.Methods and ResultsWe conducted a retrospective chart review of all patients discharged from a tertiary medical center between October 2015 and April 2020 initiated on continuous palliative inotropes. We identified 53 patients who were discharged on continuous palliative inotropes. Most patients (46/53 [87%]) had a documented GOCC, including discussions around preferences for life-sustaining treatments, hospice, and/or prognosis. However, just more than one-half of the patients (55% [15/27]) with an ICD had a documented discussion regarding preferences for ICD deactivation. Patients seen by palliative care were more likely to have a documented discussion about ICD deactivation (68% vs 0%, P = .0098). The frequency of palliative care consultation and documented GOCC conversations increased over time.ConclusionsAlthough we observed overall high rates of documented GOCC, there is room for improving the rate of discussions with patients about whether they wish to have their ICD deactivated. Future research should test interventions to improve the frequency of ICD discussions.     

Palliative Care Consultations for Heart Failure Patients: How Many,When, and Why?

ObjectiveIn preparation for development of a palliative care intervention for patients with heart failure (HF) and their caregivers, we aimed to characterize the HF population receiving palliative care consultations (PCCs).Methods and ResultsReviewing charts from January 2006 to April 2011, we analyzed HF patient data including demographic and clinical characteristics, Seattle Heart Failure scores, and PCCs. Using Atlas qualitative software, we conducted a content analysis of PCC notes to characterize palliative care assessment and treatment recommendations. There were 132 HF patients with PCCs, of which 37% were New York Heart Association functional class III and 50% functional class IV. Retrospectively computed Seattle Heart Failure scores predicted 1-year mortality of 29% [interquartile range (IQR) 19–45] and median life expectancy of 2.8 years [IQR 1.6–4.2] years. Of the 132 HF patients, 115 (87%) had died by the time of the audit. In that cohort the actual median time from PCC to death was 21 [IQR 3–125] days. Reasons documented for PCCs included goals of care (80%), decision making (24%), hospice referral/discussion (24%), and symptom management (8%).ConclusionsDespite recommendations, PCCs are not being initiated until the last month of life. Earlier referral for PCC may allow for integration of a broader array of palliative care services.     

Accuracy of primary care and hospital-based physicians' predictions of elderly outpatients' treatment preferences with and without advance directives

BACKGROUND: Past research has documented that primary care physicians and family members are often inaccurate when making substituted judgments for patients without advance directives (ADs). This study compared the accuracy of substituted judgments made by primary care physicians, hospital-based physicians, and family surrogates on behalf of elderly outpatients and examined the effectiveness of ADs in improving the accuracy of these judgments. PARTICIPANTS AND METHODS: Participants were 24 primary care physicians of 82 elderly outpatients, 17 emergency and critical care physicians who had no prior experience with the patients, and a baseline comparison group of family surrogates. The primary outcome was accuracy of physicians' predictions of patients' preferences for 4 life-sustaining treatments in 9 hypothetical illness scenarios. Physicians made substituted judgments after being provided with no patient AD, patient's value-based AD, or patient's scenario-based AD. RESULTS: Family surrogates' judgments were more accurate than physicians'. Hospital-based physicians making predictions without ADs had the lowest accuracy. Primary care physicians' accuracy was not improved by either AD. Accuracy and confidence in predictions of hospital-based physicians was significantly improved for some scenarios using a scenario-based AD. CONCLUSIONS: Although ADs do not improve the accuracy of substituted judgments for primary care physicians or family surrogates, they increase the accuracy of hospital-based physicians. Primary care physicians are withdrawing from hospital-based care in growing numbers, and emergency medicine and critical care specialists most often are involved in decisions about whether to begin life-sustaining treatments. If ADs can help these physicians better understand patients' preferences, patient autonomy more likely will be preserved when patients become incapacitated.     

Health Literacy and Heart Failure Management in Patient-Caregiver Dyads

BackgroundOlder adults with heart failure (HF) often need caregivers to assist with care, yet little is known about the health literacy of both patients and their caregivers. The objective of this study was to assess health literacy and the relationship between health literacy and HF self-care in HF patient-caregiver dyads.Methods and ResultsSeventeen patient-caregiver dyads were recruited. Dyads completed a measure of HF self-care and 2 measures of health literacy: 3 validated questions and a nutrition label reading task. Patients were older than caregivers and the majority of both patients and caregivers were female. Caregivers had higher health literacy by both the health literacy questions (P = .001) and label-reading measure (P = .001). All caregivers had adequate health literacy as assessed by the 3 questions, but 29% had inadequate health literacy according to the label-reading task. Caregivers and patients scored adequately in HF maintenance but inadequately in management and confidence domains.ConclusionsCaregivers had better health literacy than patients; however, the task-oriented label-reading measure revealed poorer health literacy than the self-report measure. Measures of health literacy that reflect day to day tasks may be more illuminating than the 3 questions.     

Thirst Trajectory and Factors Associated With Persistent Thirst in Patients With Heart Failure

BackgroundThirst is often increased in patients with heart failure (HF) and can cause distress during the course of the condition. The aim of the present study was to describe the trajectory of thirst during an 18-month period and to identify variables associated with persistent thirst in patients with HF.Methods and ResultsData were collected from 649 patients with HF with the use of the Revised Heart Failure Compliance Scale at 1, 6, 12, and 18 months after a period of hospital treatment for worsening HF. Thirst trajectory was described for the 4 follow-up visits and logistic regression analysis was used to identify factors independently associated with persistent thirst. In total, 33% (n = 212) of the patients reported thirst on ≥1 occasions and 34% (n = 46) continued to have thirst at every follow-up visit. Nineteen percent (n = 121) of the patients had persistent thirst. Patients with persistent thirst were more often younger and male and had more HF symptoms. Higher body mass index and serum urea also increased the risk of persistent thirst.ConclusionsPatients with HF who were thirsty at the 1-month follow-up were more often also thirsty at subsequent visits. Assessment of thirst is warranted in clinical practice because one-fifth of patients suffer from persistent thirst.     

A multimedia intervention on cardiopulmonary resuscitation and advance directives

OBJECTIVE: To assess the effects of a multimedia educational intervention about advance directives (ADs) and cardiopulmonary resuscitation (CPR) on the knowledge, attitude and activity toward ADs and life-sustaining treatments of elderly veterans. DESIGN: Prospective randomized controlled, single blind study of educational interventions. SETTING: General medicine clinic of a university-affiliated Veterans Affairs Medical Center (VAMC). PARTICIPANTS: One hundred seventeen Veterans, 70 years of age or older, deemed able to make medical care decisions. INTERVENTION: The control group (n = 55) received a handout about ADs in use at the VAMC. The experimental group (n = 62) received the same handout, with an additional handout describing procedural aspects and outcomes of CPR, and they watched a videotape about ADs. MEASUREMENTS AND MAIN RESULTS: Patients' attitudes and actions toward ADs, CPR and life-sustaining treatments were recorded before the intervention, after it, and 2 to 4 weeks after the intervention through self-administered questionnaires. Only 27.8% of subjects stated that they knew what an AD is in the preintervention questionnaire. This proportion improved in both the experimental and control (87.2% experimental, 52.5% control) subject groups, but stated knowledge of what an AD is was higher in the experimental group (odds ratio = 6.18, p <.001) and this effect, although diminished, persisted in the follow-up questionnaire (OR = 3.92, p =. 003). Prior to any intervention, 15% of subjects correctly estimated the likelihood of survival after CPR. This improved after the intervention in the experimental group (OR = 4.27, p =.004), but did not persist at follow-up. In the postintervention questionnaire, few subjects in either group stated that they discussed CPR or ADs with their physician on that day (OR = 0.97, p = NS). CONCLUSION: We developed a convenient means of educating elderly male patients regarding CPR and advance directives that improved short-term knowledge but did not stimulate advance care planning.