Heart failure (HF) is a progressive condition with high mortality and heavy symptom burden. Despite guideline recommendations, cardiologists refer to palliative care at rates much lower than other specialties and very late in the course of the disease, often in the final 3 days of life. One reason for delayed referral is that prognostication is challenging in patients with HF, making it unclear when and how the limited resources of specialist palliative care will be most beneficial. It might be more prudent to consider palliative care referrals at critical moments in the trajectory of patients with HF. These include: a) the development of poor prognostic signs in the outpatient setting; b) hospitalization or intensive care unit admission, and c) at the time of evaluation for certain procedures, such as left ventricular assist device placement and ablation for refractory ventricular arrhythmias, among others. In this review, we also summarize the results of clinical trials evaluating palliative interventions in these settings.
PURPOSE OF REVIEW: Patients with heart failure (HF) have an increased symptom burden and complex psychosocial and decision-making needs that necessitate the integration of palliative care. However, in the current era, palliative care is frequently evoked for these patients only at the end-of-life or in the inpatient setting; rarely is palliative care proactively utilized in outpatients with HF. The purpose of this review is to evaluate the current state of palliative care and heart failure and to provide a roadmap for the integration of palliative care into outpatient HF care. RECENT FINDINGS: Recent studies, including PAL-HF, CASA, and SWAP-HF, have demonstrated that structured palliative care interventions may improve quality of life, depression, anxiety, understanding of prognosis, and well-being in HF. HF is associated with high mortality risk, significant symptom burden, and impaired quality of life. Palliative care can meet many of these needs; however, in the current era, palliative care consultations in HF occur late in the disease course and too often in the inpatient setting. Primary palliative care should be provided to all outpatients with heart failure based on their needs, with referral to secondary palliative care provided based on certain triggers and milestones.
OBJECTIVES: To assess trends and factors associated with place of death among individuals with Alzheimer's disease-related dementias (ADRD). DESIGN: Cross-sectional analysis. SETTING: Centers for Disease Control and Prevention Wide-ranging OnLine Data for Epidemiologic Research, 2003-2017. PARTICIPANTS: Natural deaths occurring between 2003 and 2017 for which ADRD was determined to be the underlying cause. MEASUREMENTS: Place of death was categorized as hospital, home, nursing facility, hospice facility, and other. Aggregate data included age, race, Hispanic ethnicity, sex, urbanization, and census division. Individual-level predictors included age, race, Hispanic ethnicity, sex, marital status, and education. RESULTS: From 2003 to 2017, nursing facility and hospital deaths declined from 65.7% and 12.7% to 55.0% and 8.0% while home and hospice facility deaths increased from 13.6% and .2% to 21.9% and 6.2%, respectively. Odds of hospital and hospice facility deaths declined with age while odds of nursing facility deaths increased with age. Male sex was associated with higher odds of hospital or hospice facility death and lower odds of home or nursing facility death. Nonwhite race, Hispanic ethnicity, and being married were associated with increased odds of hospital or home death and reduced odds of nursing facility death. More education was associated with higher odds of home or in a hospice facility death and reduced odds of death in a nursing facility or hospital. Significant disparities in place of death by urban-rural status were also noted. CONCLUSION: As ADRD deaths at home increase, the need for caregiver support and home-based palliative care may become more critical. Further research should examine the care preferences and experiences of ADRD patients and caregivers, the financial impact of home death on families and insurers, and explore factors that may contribute to differences in actual and preferred place of death.
BACKGROUND: Disparities in health outcome exist among patients according to socioeconomic status. However, little is known regarding the differences in healthcare experiences across the various levels of income of patients. In a nationally representative US adult population, we evaluate the differences in healthcare experiences based on patient level of income. OBJECTIVES: To evaluate the differences in patient healthcare experiences based on level of income. PATIENTS AND METHODS: We identified 68,447 individuals (mean age, 48 +/- 18 years; 55% female) representing 176.8 million US adults, who had an established healthcare provider in the 2010-2013 Medical Expenditure Panel Survey cohort. This retrospective study examined the differences in all five patient-reported healthcare experience measures (access to care, provider responsiveness, patient-provider communication, shared decision-making, and patient satisfaction) under the Consumer Assessment of Healthcare Providers and Systems (CAHPS) survey. We examined the relationship between patient income and their healthcare experience. RESULTS: Overall, 32% of the study participants were high-income earners while 23% had very-low income. Lower income was consistently associated with poor patient report on healthcare experience. Compared with those with high income, very-low-income-earning participants had 1.63 times greater odds (OR 1.63, 95% CI 1.45-1.82) of experiencing difficulty accessing care, had 1.34 times higher odds (OR 1.34, 95% CI 1.25-1.45) of experiencing poor communication, had higher odds (OR 1.68, 95% CI 1.46-1.92) of experiencing delays in healthcare delivery, and were more likely to report poor provider satisfaction (OR 1.48, 95% CI 1.37-1.61). CONCLUSION: Lower income-earning patients have poorer healthcare experience in all aspects of access and quality of care. Targeted policies focusing on improving communication, engagement, and satisfaction are needed to enhance patient healthcare experience for this vulnerable population.
Importance: Use of palliative care (PC) for patients with cardiovascular disease (CVD) has increased recently. However, it is unknown if patients are receiving earlier referrals to PC. Objective: To assess characteristics and trends of patients with CVD referred to PC. Design, Setting, and Participants: Cohort study in which analysis of data from the multicenter Quality Data Collection Tool for Palliative Care registry from January 2, 2015, through December 29, 2017, included patients with CVD 18 years or older referred to initial PC consultation who had a documented palliative performance score (PPS) . Exposures: Patients with CVD who presented for an initial PC visit. Main Outcomes and Measures: The primary outcome was PPS. Secondary outcomes included symptoms and end-of-life documentation. Results: Among 1801 patients (mean [SD] age, 77.7 [13.7] years) from 16 sites in the analysis, 875 (48.6%) were women and 1339 (74.3%) were white. A low PPS score (0%-30%), consistent with bedbound status, was recorded for 521 patients (28.9%), with no change through time. The most common moderate to severe symptoms were poor well-being, tiredness, anorexia, and dyspnea. Year of encounter was associated with improved symptoms of pain (odds ratio, 1.25; 95% CI, 1.05-1.50) and with constipation (odds ratio, 1.32; 95% CI, 1.03-1.69). No change through time was noted in other symptoms or end-of-life documentation. Although the proportion of referrals from general medicine increased from 43.2% (167 of 387) in 2015 to 52.9% (410 of 775) in 2017, the proportion of referrals from cardiologists decreased from 16.5% (64 of 387) in 2015 to 10.5% (81 of 775) in 2017. The proportion of patients referred to PC who were black decreased from 11.9% (46 of 387) in 2015 to 6.3% (49 of 775) in 2017. While 69.5% of all patients with CVD (1252 of 1801) had a primary diagnosis of heart failure, the proportion of non-heart failure CVD diagnoses, such as coronary artery disease and valvular heart disease, increased from 25.6% (99 of 387) in 2015 to 30.1% (233 of 775) in 2017. Conclusions and Relevance: Patients with CVD demonstrated significant symptom burden, and there was no evidence in the registry of change in the PPSs of patients with CVD referred to PC through time. Cardiologists provided comparatively fewer referrals to PC for patients with CVD, and this proportion decreased through time. The proportion of racial and ethnic minorities referred to PC was small and decreased through time. These findings reinforce the need for cardiologists to be more engaged with PC and consider referring appropriate patients with CVD sooner.
BACKGROUND: Patients considering destination therapy left ventricular assist devices (DT LVAD) often have high comorbid burden but the association between these comorbidities and post-decision outcomes is unknown. METHODS: We included subjects in DECIDE-LVAD (NCT02344576), a stepped-wedge multicenter trial of patients considering LVADs, recording comorbidities per INTERMACS protocol. We compared decisional conflict, regret, perceived stress, quality of life (EQ-VAS), depression (PHQ-2), struggle with- and acceptance of illness by comorbid burden and amongst the most common comorbidities. RESULTS: Of 239 patients, LVAD recipients (n=164) and non-recipients (n=75) had a similar proportion with >/=1 comorbidity (70% v. 80%, P=.09). Patients with comorbidities were younger regardless of LVAD implantation status. After adjusting for age, overall and amongst LVAD recipients, patients with >/=1 comorbidity had higher mean decision conflict at baseline (23.2+/-1.5 vs. 17.4+/-2.2), and at 6 months, higher stress (13.0+/-0.6 vs. 10.4+/-1.0) and struggle with illness (13.3+/-0.4 vs. 11.1+/-0.6) than those without comorbidities (P<.05). No difference was noted in decision regret, PHQ-2, EQ-VAS, acceptance of illness and survival overall and amongst LVAD recipients. Of the three most common comorbidities, while patients with pulmonary hypertension had worse decision regret, depression, stress and acceptance of illness at 6-month follow-up than those who did not have pulmonary hypertension, no difference was noted in patients with chronic renal disease or high body mass index. CONCLUSION: Patients considering LVAD implantation with comorbidities experience increased decision conflict, stress and struggle with illness. These findings provide insights in the role comorbidities play in patient decision-making and decisional outcomes.
Despite its many benefits, hospice care is underused for patients with heart failure. This paper discusses the factors contributing to this underuse and offers recommendations to optimise use for patients with heart failure and proposes metrics to optimise quality of hospice care for this patient group.
Importance: The number of patients living with end-stage heart failure is steadily growing, and ambulatory intravenous inotropic support is increasingly offered as a palliative therapy. However, the optimal ways to initiate, manage, and discuss the risks and benefits of palliative inotropes in the current era of heart failure care are unclear. Observations: The initiation of palliative inotropes requires an understanding of clinical, psychosocial, and economic factors, as well as the changing risk-to-benefit calculus. While earlier studies suggested that outpatient inotrope therapy provided symptomatic benefit at the expense of reduced survival, recent data suggest that the survival of patients receiving chronic inotropes may be improving over time, perhaps owing to the use of implantable cardioverter defibrillators, concurrent guideline-directed medical therapy, or lower doses of inotropes. The use of heart failure therapies, such as beta-blockade, among patients receiving palliative inotropes is controversial but may be appropriate in select situations. Conclusions and Relevance: The role of palliative inotropes is changing in tandem with advances in chronic heart failure care. However, there remains a profound lack of data and guidance on the effect of palliative inotropes on quality of life and mortality and little consensus on how this therapy can be optimally used in contemporary practice. This review provides a framework for the prescription and management of palliative inotropes, including a discussion of potential risks and benefits and a roadmap for how to initiate, maintain, and wean them.