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In this case report, we describe a woman with advancing dementia who still retained decisional capacity and was able to clearly articulate her request for deactivation of her implanted cardiac pacemaker-a scenario that would result in her death. In this case, the patient had the autonomy to make her decision, but clinicians at an outside hospital refused to deactivate her pacemaker even though they were in unanimous agreement that the patient had capacity to make this decision, citing personal discomfort and a belief that her decision seemed out of proportion to her suffering. We evaluated her at our hospital, found her to have decision-making capacity, and deactivated her pacer resulting in her death about 9 days later. While some clinicians may be comfortable discussing patient preferences for device deactivation in patients who are imminently dying, we can find no reports in the literature of requests for device deactivation from patients with terminal diagnoses who are not imminently dying.
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PURPOSE: Adults with high-grade glioma (HGG), WHO grade III or IV, have substantial palliative care needs. Our aim was to determine occurrence, timing, and factors associated with palliative care consultation (PCC) in HGG at one large academic institution. METHODS: HGG patients receiving care between 08/1/2011 and 01/23/2020 were identified retrospectively from a multi-center healthcare system cancer registry. Patients were stratified by any PCC (yes/no), and timing of initial PCC by disease phase: diagnosis (before radiation), during initial treatment (first-line chemotherapy/radiation), second-line treatment(s), or end-of-life (after last chemotherapy). RESULTS: Of 621 HGG patients, 134 (21.58%) received PCC with the vast majority occurring during hospital admission [111 (82.84%)]. Of the 134, 14 (10.45%) were referred during the diagnostic phase; 35 (26.12%) during initial treatment; 20 (14.93%) during second-line treatment; and 65 (48.51%) during end of life. In multivariable logistic regression, only higher Charlson Comorbidity Index was associated with greater odds of PCC [OR 1.3 (95% CI 1.2-1.4), p < 0.01]; but not age or histopathology. Patients who received PCC prior to end of life had longer survival from diagnosis than those referred during end of life [16.5 (8, 24) months vs. 11 (4, 17); p < 0.01]. CONCLUSION: A minority of HGG patients ever received PCC, which primarily occurred in the inpatient setting, and nearly half during the end-of-life phase. Thus, only about one in ten patients in the entire cohort potentially received the benefits of earlier PCC despite earlier referral having an association with longer survival. Further studies should elucidate barriers and facilitators to early PCC in HGG.
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Glioma , Cuidados Paliativos , Adulto , Humanos , Estudos Retrospectivos , Glioma/epidemiologia , Glioma/terapia , Encaminhamento e Consulta , MorteRESUMO
Our analysis from a national registry shows that compared to cancer, cardiovascular disease patients referred to palliative care are a decade older, have worse functional status and clinician-estimated prognosis. Both groups have very high symptom burden, with cardiovascular disease patients experiencing more dyspnea while pain, nausea, and fatigue are more common in cancer.
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Doenças Cardiovasculares/terapia , Neoplasias/terapia , Cuidados Paliativos , Fatores Etários , Idoso , Dor do Câncer , Doenças Cardiovasculares/complicações , Efeitos Psicossociais da Doença , Dispneia/etiologia , Fadiga/etiologia , Feminino , Humanos , Modelos Logísticos , Masculino , Náusea/etiologia , Neoplasias/complicações , Razão de Chances , Desempenho Físico Funcional , Prognóstico , Encaminhamento e Consulta , Sistema de RegistrosRESUMO
IMPORTANCE: Despite efforts to enhance serious illness communication, patients with advanced heart failure (HF) lack prognostic understanding. OBJECTIVES: To determine rate of concordance between HF patients' estimation of their prognosis and their physician's estimate of the patient's prognosis, and to compare patient characteristics associated with concordance. DESIGN: Cross-sectional analysis of a cluster randomized controlled trial with 24-month follow-up and analysis completed on 09/01/2020. Patients were enrolled in inpatient and outpatient settings between September 2011 to February 2016 and data collection continued until the last quarter of 2017. SETTING: Six teaching hospitals in the U.S. PARTICIPANTS: Patients with advanced HF and implantable cardioverter defibrillators (ICDs) at high risk of death. Of 537 patients in the parent study, 407 had complete data for this analysis. INTERVENTION: A multi-component communication intervention on conversations between HF clinicians and their patients regarding ICD deactivation and advance care planning. MAIN OUTCOME(S) AND MEASURE(S): Patient self-report of prognosis and physician response to the "surprise question" of 12-month prognosis. Patient-physician prognostic concordance (PPPC) measured in percentage agreement and kappa. Bivariate analyses of characteristics of patients with and without PPPC. RESULTS: Among 407 patients (mean age 62.1 years, 29.5% female, 42.4% non-white), 300 (73.7%) dyads had non-PPPC; of which 252 (84.0%) reported a prognosis >1 year when their physician estimated <1 year. Only 107 (26.3%) had PPPC with prognosis of ≤ 1 year (n=20 patients) or > 1 year (n=87 patients); (Κâ¯=â¯-0.20, pâ¯=â¯1.0). Of those with physician estimated prognosis of < 1 year, non-PPPC was more likely among patients with lower symptom burden- number and severity (both p ≤.001), without completed advance directive (p=.001). Among those with physician prognosis estimate > 1 year, no patient characteristic was associated with PPPC or non-PPPC. CONCLUSIONS AND RELEVANCE: Non-PPPC between HF patients and their physicians is high. HF patients are more optimistic than clinicians in estimating life expectancy. These data demonstrate there are opportunities to improve the quality of prognosis disclosure between patients with advanced HF and their physicians. Interventions to improve PPPC might include serious illness communication training.
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Planejamento Antecipado de Cuidados , Desfibriladores Implantáveis , Insuficiência Cardíaca , Estudos Transversais , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/epidemiologia , Insuficiência Cardíaca/terapia , Humanos , Masculino , Pessoa de Meia-Idade , PrognósticoRESUMO
BACKGROUND: Although cardiology organizations recommend early introduction of palliative care for patients with heart failure (HF), integration has remained challenging, particularly in patients with cardiac devices such as cardiac implantable electronic devices and left ventricular assist devices. Study authors suggest that patients often have limited and erroneous understanding of these devices and their implications for future care. OBJECTIVE: The aim of this study was to assess perceptions of cardiac devices in patients with HF and how these perceptions impacted advance care planning and future expectations. METHODS: This study used qualitative semistructured interviews with 18 community-dwelling patients with New York Heart Association stage II to IV HF. RESULTS: We interviewed 18 patients (mean ejection fraction, 38%; mean age, 64 years; 33% female; 83% white; 39% New York Heart Association class II, 39% class III, and 22% class IV). All had a cardiac implantable electronic device (6% permanent pacemaker, 56% implantable cardioverter-defibrillator, 28% biventricular implantable cardioverter-defibrillator); 11% had left ventricular assist devices. Patients with devices frequently misunderstood the impact of their device on cardiac function. A majority expressed the belief that the device would forestall further deterioration, regardless of whether this was the case. This anticipation of stability was often accompanied by the expectation that emerging technologies would continue to preempt decline. Citing this faith in technology, these patients frequently saw limited value in advance care planning. CONCLUSIONS: In our sample, patients with cardiac devices overestimated the impact of their devices on preventing disease progression and death and deprioritized advance care planning as a result.
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Planejamento Antecipado de Cuidados , Atitude Frente a Saúde , Insuficiência Cardíaca/terapia , Coração Auxiliar/psicologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prognóstico , Pesquisa QualitativaRESUMO
BACKGROUND: Heart failure (HF) is the most common diagnosis in hospitalized patients older than 65 years of age. Although these patients often need specialist-directed palliative care, <10% ever receive these services. This may be due to a lack of evidence examining the benefits of palliative care for these patients. To understand the current state of research on the interface of palliative care and HF, we examined trends in publications, presentations at national meetings, and National Institutes of Health (NIH) funding. METHODS: Using key terms, we identified items about palliative care and HF in the following sources: (1) the tables of contents of nine leading cardiology journals, (2) abstracts of conference proceedings from four cardiology societies, and (3) all NIH grants from 2009 to 2013. RESULTS: Of the journals reviewed, fewer than 1% of their publications related to palliative care. Less than 2% of HF-related sessions in conference proceedings mentioned palliative care. Of the NIH's $45 billion directed to HF research, only $14 million (0.03%) was spent on palliative care research. CONCLUSIONS: Despite calls for improving palliative care for patients with advanced HF, a lack of sufficient attention persists in research abstracts, concurrent sessions at national meetings, and NIH funding to increase the evidence base. Without these improvements, the ability to deliver high-quality specialist palliative care to patients with HF and their families will remain severely limited.
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Administração Financeira/economia , Insuficiência Cardíaca/terapia , National Institutes of Health (U.S.)/economia , Cuidados Paliativos/organização & administração , Idoso , Congressos como Assunto , Medicina Baseada em Evidências , Feminino , Insuficiência Cardíaca/diagnóstico , Insuficiência Cardíaca/mortalidade , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Pesquisa Qualitativa , Doente Terminal , Estados UnidosRESUMO
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
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Insuficiência Cardíaca/terapia , Cuidados Paliativos/organização & administração , Atenção Primária à Saúde , Humanos , Prognóstico , Qualidade de VidaRESUMO
BACKGROUND: Advanced lung cancer (LC) patients and their families have reported low self-efficacy for self-care/caregiving and high rates of distress, yet few programs exist to address their supportive care needs during treatment. This pilot study examined the feasibility, acceptability, and preliminary efficacy of a 6-session, telephone-based dyadic psychosocial intervention that was developed for advanced LC patients and their caregivers. The program was grounded in self-determination theory (SDT), which emphasizes the importance of competence (self-efficacy), autonomy (sense of choice/volition), and relatedness (sense of belonging/connection) for psychological functioning. The primary outcomes were patient and caregiver psychological functioning (depression/anxiety) and caregiver burden. The secondary outcomes were the SDT constructs of competence, autonomy, and relatedness. METHODS: Thirty-nine advanced LC patients who were within 1 month of treatment initiation (baseline) and their caregivers (51% spouses/partners) completed surveys and were randomized to the intervention or usual medical care. Eight weeks after baseline, they completed follow-up surveys. RESULTS: Solid recruitment (60%) and low attrition rates demonstrated feasibility. Strong program evaluations (mean, 8.6/10) and homework completion rates (88%) supported acceptability. Participants receiving the intervention evidenced significant improvements (P < .0001) in depression, anxiety, and caregiver burden in comparison with usual medical care. Large effect sizes (d ≥ 1.2) favoring the intervention were also found for patient and caregiver competence and relatedness and for caregiver autonomous motivation for providing care. CONCLUSION: These findings support intervention feasibility, acceptability, and preliminary efficacy. By empowering families with the skills to coordinate care and meet the challenges of LC together, this intervention holds great promise for improving palliative/supportive care services in cancer.
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Cuidadores/psicologia , Terapia Familiar/métodos , Neoplasias Pulmonares/psicologia , Psicoterapia Breve/métodos , Família/psicologia , Estudos de Viabilidade , Humanos , Neoplasias Pulmonares/enfermagem , Projetos Piloto , Autoeficácia , Inquéritos e QuestionáriosRESUMO
CONTEXT: Faced with a projected shortage of specialized palliative care physicians, scalable palliative solutions are required to better meet the aging population's needs. OBJECTIVES: To determine whether a multi-site, primary care-led, integrated palliative care model improves clinical, utilization, and economic outcomes. METHODS: Propensity score-matched comparison group formed from participants who were Medicare beneficiaries, died January 1, 2021-January 31, 2023, were patients of eight primary care practices that partner with agilon health, and enrolled in palliative care for at least seven days. Each practice operates in a value-based model, where primary care providers (PCPs) take on full-risk for the cost and quality of patient outcomes. Each program includes symptom management, defining goals of care/advance directives, PCP care coordination, and assistance with care transitions if patients enroll in hospice. RESULTS: Final sample included 1778 decedents, with 889 in both enrolled and matched cohorts, average age 83. Palliative care is associated with improved patient outcomes from palliative care enrollment until death, including 5.4 more days at home (p < 0.001), 0.4 fewer hospitalizations (p < 0.001), 17% fewer deaths in a hospital (p < 0.001), and $10,393 lower overall healthcare costs (p < 0.001). CONCLUSION: A primary care-led, integrated approach of delivering palliative care within a full-risk model can be an effective care delivery mechanism to meet the healthcare needs of an aging population by impacting patient outcomes and reducing avoidable utilization and cost at the end of life. These findings demonstrate that PCPs in a scaled, full-risk model can simultaneously improve care for patients while reducing costs to the healthcare system.
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Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Idoso , Humanos , Estados Unidos , Idoso de 80 Anos ou mais , Medicare , Hospitalização , Atenção Primária à SaúdeRESUMO
CONTEXT: Early palliative care referral is recommended broadly in oncology. Yet, few patients with high-grade gliomas (HGG) - highly aggressive brain tumors - receive specialty palliative care consultation. OBJECTIVES: To delineate unique needs of HGG patients relative to other oncology patients according to perceptions of a diverse sample of US palliative medicine physicians and neuro-oncologists in each of the eight domains of palliative care; and to describe contrasts between physician specialties on indications for and timing of specialty palliative care referrals in HGG. METHODS: Between September 2021 and May 2023, we conducted semi-structured, 40-minute interviews with ten palliative medicine physicians and ten neuro-oncologists. Participants were recruited via purposive sampling for diversity in geographic setting, years in practice, and practice structure. Interviews were audio-recorded, professionally transcribed, and coded by two investigators. Data were analyzed thematically using a qualitative, phenomenological approach. RESULTS: The palliative care needs of HGG relative to other cancers across palliative care domains are distinguished by poor prognosis, physical and cognitive deficits, and neuropsychiatric symptoms. Themes on indications for palliative care referral differed between neuro-oncologists and palliative physicians. Neuro-oncologists favored selective referral for clinical indications such as high non-neurologic symptom burden requiring time-intensive management. Palliative physicians favored early referral of most HGG patients, to allow for maximal benefit across HGG trajectory. CONCLUSION: Patients with HGG have unique palliative care needs that affect palliative care delivery across care domains. Bidirectional education, enhanced collaboration, and consensus guidelines may help overcome barriers to specialty palliative care referral.
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Neoplasias Encefálicas , Glioma , Cuidados Paliativos , Encaminhamento e Consulta , Humanos , Glioma/terapia , Neoplasias Encefálicas/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Oncologistas , Atitude do Pessoal de Saúde , AdultoRESUMO
Background: Patients with high-grade glioma have high palliative care needs, yet few receive palliative care consultation. This study aims to explore themes on (1) benefits of primary (delivered by neuro-oncologists) and specialty palliative care (SPC) and (2) barriers to SPC referral, according to a diverse sample of clinicians. Methods: From September 2021 to May 2023, 10 palliative physicians and 10 neuro-oncologists were recruited via purposive sampling for diversity in geographic setting, seniority, and practice structure. Semistructured, 45-minute interviews were audio-recorded, professionally transcribed, and coded by 2 investigators. A qualitative, phenomenological approach to thematic analysis was used. Results: Regarding primary palliative care, (1) neuro-oncologists have primary ownership of cancer-directed treatment and palliative management and (2) the neuro-oncology clinic is glioma patients' medical home. Regarding SPC, (1) palliative specialists' approach is beneficial even without disease-specific expertise; (2) palliative specialists have time to comprehensively address palliative needs; and (3) earlier SPC enhances its benefits. For referral barriers, (1) appointment burden can be mitigated with telehealth, home-based, and embedded palliative care; (2) heightened stigma associating SPC with hospice in a population with high death anxiety can be mitigated with earlier referral to promote rapport-building; and (3) lack of neuro-oncologic expertise among palliative specialists can be mitigated by emphasizing their role in managing nonneurologic symptoms, coping support, and anticipatory guidance. Conclusions: These themes emphasize the central role of neuro-oncologists in addressing palliative care needs in glioma, without obviating the need for or benefits of SPC. Tailored models may be needed to optimize the balance of primary and specialty palliative care in glioma.
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CONTEXT: Palliative care is increasingly recognized as an important aspect of heart failure (HF) management, but data on gender differences regarding palliative care needs are scarce. OBJECTIVE: We retrospectively studied patients hospitalized with a primary diagnosis of HF who received an initial palliative care consultation in the Mount Sinai Health System to examine gender differences. METHODS: From electronic health records, we extracted patient information, diagnostic codes, and the palliative care consult assessment which included the Karnofsky performance status (KPS) and the Edmonton symptom assessment scale (ESAS). The population was stratified according to self-identified gender. Unadjusted and adjusted generalized linear models were fitted to study the association of gender with KPS and ESAS scores. RESULTS: Among 667 patients with HF who received a palliative care consultation, 327 (49.0%) were women. Women with HF were older than men and less likely to be married. As compared to men, women had worse functional status, were less likely to have capacity to designate a surrogate medical decision-maker, had a higher symptom burden and were more likely to experience severe symptoms at the time of initial palliative care consultation. Differences in functional status and symptom burden were particularly pronounced in young women and women identifying as Black or Hispanic. The association of gender with functional status and symptom burden remained statistically significant after adjusting for possible confounders. CONCLUSION: As compared to men, women with HF were more severely impaired at the time of palliative care consult, and dedicated efforts to better address their needs are warranted.
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BACKGROUND: In response to a growing need for accessible, efficient, and effective palliative care services, we designed, implemented, and evaluated a novel palliative care at home (PC@H) model for people with serious illness that is centered around a community health worker, a registered nurse, and a social worker, with an advanced practice nurse and a physician for support. Our objectives were to measure the impact of receipt of PC@H on patient symptoms, quality of life, and healthcare utilization and costs. METHODS: We enrolled 136 patients with serious illness in this parallel, randomized controlled trial. Our primary outcome was change in symptom burden at 6 weeks. Secondary outcomes included change in symptom burden at 3 months, change in quality of life at 6 weeks and 3 months, estimated using a group t-test. In an exploratory aim, we examined the impact of PC@H on healthcare utilization and cost using a generalized linear model. RESULTS: PC@H resulted in a greater improvement in patient symptoms at 6 weeks (1.30 score improvement, n = 37) and 3 months (3.14 score improvement, n = 21) compared with controls. There were no differences in healthcare utilization and costs between the two groups. Unfortunately, due to the COVID-19 pandemic and a loss of funding, the trial was not able to be completed as originally intended. CONCLUSIONS: A palliative care at home model that leverages community health workers, registered nurses, and social workers as the primary deliverers of care may result in improved patient symptoms and quality of life compared with standard care. We did not demonstrate significant differences in healthcare utilization and cost associated with receipt of PC@H, likely due to inability to reach the intended sample size and insufficient statistical power, due to elements beyond the investigators' control such as the COVID-19 public health emergency and changes in grant funding.
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Significant mortality benefits have been documented in recipients of implantable cardioverter defibrillators (ICDs); however, the psychosocial distress created by the underlying arrhythmia and its potential treatments in patients and family members may be underappreciated by clinical care teams. The disentanglement of cardiac disease and device-related concerns is difficult. The majority of ICD patients and families successfully adjust to the ICD, but optimal care pathways may require additional psychosocial attention to all ICD patients and particularly those experiencing psychosocial distress. This state-of-the-science report was developed on the basis of an analysis and critique of existing science to (1) describe the psychological and quality-of-life outcomes after receipt of an ICD and describe related factors, such as patient characteristics; (2) describe the concerns and educational/informational needs of ICD patients and their family members; (3) outline the evidence that supports interventions for improving educational and psychological outcomes for ICD patients; (4) provide recommendations for clinical approaches for improving patient outcomes; and (5) identify priorities for future research in this area. The ultimate goal of this statement is to improve the precision of identification and care of psychosocial distress in ICD patients to maximize the derived benefit of the ICD.
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American Heart Association , Desfibriladores Implantáveis/psicologia , Família/psicologia , Educação de Pacientes como Assunto/métodos , Guias de Prática Clínica como Assunto , Humanos , Guias de Prática Clínica como Assunto/normas , Resultado do Tratamento , Estados UnidosRESUMO
Context: Although palliative care is guideline-indicated for patients with advanced heart failure (HF), the scarcity of a specialty-trained palliative care workforce demands better identification of patients who are most burdened by the disease. Objectives: We sought to identify latent subgroups with variations regarding symptom burden, functional status, and multimorbidity in an advanced HF population. Methods: We performed a latent class analysis (LCA) of baseline data from a trial enrolling advanced HF patients. As LCA input variables, we chose indicators of HF severity, physical and psychological symptom burden, functional status, and the number of comorbidities. Results: Among 563 patients, two subgroups emerged from LCA, Class A (352 [62.5%]) and Class B (211 [37.5%]). Patients in Class A were less often classified as NYHA class III or IV (88.0% vs. 97.5%, P < 0.001), as compared to Class B patients. Class A patients had fewer symptoms, fewer comorbidities, only 25.9% had impairments in activities of daily living (ADL), and virtually none suffered from clinically significant anxiety (0.4%) or depression (0.9%). In Class B, every patient reported more than three symptoms, almost all patients (92.6%) had some impairment in ADL, and nearly a third had anxiety (30.2%) or depression (28.3%). All-cause mortality after 12 months was higher in Class B, as compared to Class A (18.5% vs. 12.5%, P = 0.047). Conclusion: Among advanced HF patients, we identified a distinct subgroup characterized by a conjunction of high symptom burden, anxiety, depression, multimorbidity, and functional status impairment, which might profit particularly from palliative care interventions. J Pain Symptom Manage 2022;000:1-9.
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Insuficiência Cardíaca , Qualidade de Vida , Humanos , Atividades Cotidianas , Análise de Classes Latentes , Cuidados PaliativosRESUMO
The role of palliative care for patients with heart failure (HF) is discussed in both most recent HF guidelines, the 2021 ESC guideline and the 2022 AHA/ACC/HFSA guideline. This review compares the definitions, concepts and specific recommendations regarding palliative care for patients with HF in these two guidelines. Both HF guidelines define palliative care as a multidisciplinary approach aimed at alleviating physical, psychological and spiritual distress of patients and caregivers. Both agree emphatically on the importance of palliative care across all stages of HF with integration early in the illness trajectory. Also, the guidelines concur that palliative care should include symptom management, communication about prognosis and life-sustaining therapies, as well as advance care planning. Despite this consensus, only the AHA/ACC/HFSA guideline gives official recommendations on the provision of palliative care. Moreover, the AHA/ACC/HFSA guideline advocates for a needs-based approach to palliative care allocation while the ESC guideline ties palliative care closely to advanced HF and end-of-life care. The ESC guideline highlights the need for regular symptom assessment and provides detailed guidance on symptom management. The AHA/ACC/HFSA guideline elaborates further on shared decision-making, caregiver and bereavement support, as well as hospice care, and distinguishes between primary palliative care (provided by all clinicians) and secondary (specialty-level) palliative care. Although there is strong agreement on the importance and components of palliative care for patients with HF, there are nuanced differences between the two HF guidelines. Most notably, only the AHA/ACC/HFSA guideline issues recommendations for the provision of palliative care.
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Insuficiência Cardíaca , Humanos , Estados Unidos , Insuficiência Cardíaca/terapia , Insuficiência Cardíaca/diagnóstico , Cuidados PaliativosRESUMO
CONTEXT: Palliative care is guideline-recommended for patients with advanced heart failure (HF). However, studies on how cardiac palliative care is provided in the United States are lacking. OBJECTIVES: To study how cardiac palliative care programs provide services, and to identify challenges and facilitators they encountered in program development. METHODS: In this qualitative descriptive study, we used purposive and snowball sampling approaches to identify cardiac palliative care program leaders across the United States, administered a survey and conducted semi-structured interviews. Interview transcripts were coded and evaluated using thematic analysis. RESULTS: While cardiac palliative care programs vary in their organizational setup, they all provide comprehensive interdisciplinary palliative care services, ideally across the care continuum. They predominantly serve HF patients who are evaluated for advanced therapies or have complex needs. The challenges which cardiac palliative care programs face include reaching those cardiac patients who need palliative care the most and collaborating with cardiologists who do not see value added from palliative care for their patients. Facilitators of cardiac palliative care program development include building personal relationships with cardiology providers, proactively assessing local institution needs, and tailoring palliative care services to meet patient and provider needs. CONCLUSION: Cardiac palliative care programs vary in their organizational setup but provide similar services and face similar challenges. The challenges and facilitators we identified can inform the development of future cardiac palliative care programs.
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Insuficiência Cardíaca , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Humanos , Estados Unidos , Cuidados Paliativos , Pesquisa Qualitativa , Insuficiência Cardíaca/terapia , Desenvolvimento de ProgramasRESUMO
(1) Background: Little is known about facilitators of and barriers to palliative care referral for people with hepatocellular carcinoma (HCC). The objective of this study is to identify facilitators and barriers of palliative care referral described by HCC-treating clinicians. (2) Methods: Semi-structured interviews (n = 16) were conducted with HCC-treating clinicians at two centers, focusing on referral patterns, palliative care needs, and disease course. A code book was created, axial coding was used to code all interviews, and selective coding was used to identify facilitators and barriers of palliative care referral. (3) Results: Facilitators included helpfulness at times of transition; help with management of certain symptoms; provision of psychosocial support; and positive experiences with referral. Barriers included feasibility concerns; lack of information about palliative care and who is appropriate; lack of symptoms requiring outside referral; and concerns that palliative care conveys loss of hope. (4) Conclusions: Participants noted the helpfulness of palliative care at specific points in the disease trajectory and cited barriers related to feasibility, lack of need, lack of awareness, and loss of hope. The results show actionable issues that can be addressed in future research to leverage the benefits of and overcome the barriers to palliative care for people with HCC.