Abstract 262: Preferences for Primary versus Specialty Palliative Care Among Patients With Heart Failure

Author(s):  
Dara Z Ikejiani ◽  
Rachel A Hadler ◽  
Robert M Arnold ◽  
David Bekelman ◽  
Laura T Moreines ◽  
...  

Background: More than 5 million people in the USA suffer from heart failure (HF). Palliative care (PC) is both a clinical subspecialty and overall approach to care that focuses on promoting seriously ill patients and their family’s quality of life. PC takes several forms, including consultation by a PC specialist, or attention to palliative domains by a non-PC specialist (aka “primary” PC). Despite guidelines calling for the integration of PC in HF, specialty PC remains underutilized. Patient preferences regarding primary vs specialty PC are unknown. Objective: To identify patient knowledge and perceptions regarding how primary and specialty PC could complement usual HF management, as well as barriers preventing PC utilization. Methods: We recruited individuals with NYHA class II-IV HF from general medicine wards and an outpatient advanced HF clinic, both at an academic quaternary care hospital. We conducted semi-structured interviews addressing: (1) patient-perceived physical, emotional, social, and decision-making needs; (2) perception, knowledge, and preferences regarding PC; (3) barriers and facilitators to PC. To understand patient preferences regarding primary vs specialty PC, in the interview guide, we conceptualized PC into 5 domains: physical, emotional, spiritual and social aspects of care, and advance care planning. For each domain, participants discussed unmet needs, and preferences about whether the needs would be best met by their existing cardiology team or a PC specialist. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative technique. Results: We interviewed 28 patients; 82% were white, 61% were >60 years, and 64% were male. 43% of participants had ejection fractions <30%, and 64% were of NYHA classes III or IV. Symptom burden was high and a source of dissatisfaction; yet, few believed that their disease management was suboptimal, often citing a sense of resignation that symptoms are inevitable in HF. We heard mixed and often incorrect understandings of PC (and its distinction from hospice). Once misperceptions of PC were corrected, respondents expressed variable preferences for specialty vs. primary PC. Proponents of primary PC cited trust and rapport in their existing clinicians, HF-specific expertise, convenience, and cost. Alternatively, participants preferring specialty PC involvement cited expertise in symptom management, addressing caregiver concerns, reduced time constraints, and a comprehensive non-HF-exclusive approach to care. Conclusion: We frequently identified limited and often incorrect understanding of PC. Though once corrected, patients articulated variable preferences for primary vs. specialty PC integration into their existing HF care. Research is needed to identify means of increasing primary and specialty PC delivery in HF in a manner that reflects patient preferences.

Author(s):  
Dennis Lin ◽  
Megan Borjan ◽  
Seanell D. San Andres ◽  
Christina Kelly

This chapter describes the roles of physical therapy, occupational therapy, speech language pathology, and recreation therapy in providing rehabilitation for patients receiving palliative care. Palliative rehabilitation should be included as part of a comprehensive interdisciplinary effort to support patients who experience functional impairments or symptoms that impact daily life and that result from terminal illness. Palliative rehabilitation focuses on creating collaborative goals that address disability and easing symptom burden to maximize or maintain function throughout every stage of disease. Patients receiving the appropriate rehabilitative interventions can adapt to the changes and foster an optimal quality of life. Nurses collaborate with the rehabilitation team so that patients and their caregivers can achieve a greater benefit from their palliative care.


ESC CardioMed ◽  
2018 ◽  
pp. 1908-1911
Author(s):  
James Beattie

From an evolutionary base in the care of those with cancer, the potential benefits of palliative care for those affected by other life-limiting diseases such as heart failure have been widely recognized. People with heart failure are subject to a symptom burden and mortality risk similar to those associated with malignant disease, but the clinical scenario is often more complicated. This relatively aged clinical population tend to have multiple co-morbidities and an unpredictable disease trajectory. The beneficial but increasingly complex nature of comprehensive heart failure therapy in polypharmacy, implantable devices, and cardiac surgical intervention may undermine clinical coordination, patient autonomy, and ultimately conflict with patients’ and families’ changing preferences for care along a progressive disease course to the end of life. This chapter describes the challenges and opportunities in providing palliative care to this burgeoning clinical cohort.


2017 ◽  
Vol 10 (1) ◽  
pp. e9-e9 ◽  
Author(s):  
Naghada Talabani ◽  
Karin Hellström Ängerud ◽  
Kurt Boman ◽  
Margareta Brännström

ObjectivesPatients with severe heart failure (HF) suffer from a high symptom burden and high mortality. European and Swedish guidelines for HF care recommend palliative care for these patients. Different models for integrated palliative care and HF care have been described in the literature. No studies were found that qualitatively evaluated these models. The purpose of this study is to describe patients' experiences of a new model of person-centred integrated HF and palliative care at home.MethodInterviews were conducted with 12 patients with severe HF (New York Heart Association class III–IV) and included in the research project of Palliative advanced home caRE and heart FailurE caRe (PREFER). Qualitative content analysis was used for data analysis.ResultsTwo themes and a total of five categories were identified. The first theme was feeling secure and safe through receiving care at home with the categories: having access to readily available care at home, being followed up continuously and having trust in the team members' ability to help. The second theme was being acknowledged as both a person and a patient, with the following two categories: being met as a person, participating in decisions about one’s care and receiving help for symptoms of both HF and comorbidities.ConclusionsPerson-centred integrated HF and palliative care provides a secure environment and holistic care for patients with severe HF. This approach is a way to improve the care management in this population.Trial registration numberNCT01304381; Results.


2019 ◽  
Vol 37 (31_suppl) ◽  
pp. 7-7
Author(s):  
Vatsala Katiyar ◽  
Tiago Araujo ◽  
Ishaan Vohra ◽  
Rayli Pichardo ◽  
Vijaya Venkatasubbaraya Pavan Kedar Vijaya Venkatasubbar Mukthinuthalapati ◽  
...  

7 Background: Palliative care (PC) is heavily centered on patients with advanced and often incurable malignancies. Despite having a comparable symptomatic burden and worse mortality rates than some types of cancer, heart failure (HF) patients have decreased rate of palliative service referral of approximately 7%, as opposed to 48% in those with malignancies. We aim to understand the differences in the attitudes of physicians when addressing the PC needs for patients with advanced HF and malignancies. Methods: All the internal medicine residents at our institute were asked to fill out a structured paper-based questionnaire. The survey tool consisted of both Likert-type scales and open-ended questions focused on their attitude and perceptions while managing patients with advanced HF and Stage IV malignancy. Descriptive statistics and intergroup comparisons were then made for all quantifiable variables (Table). Results: Of the 137 medicine residents, 120 (87.6%) completed the survey. 70% were males and 96.6% residents were in the age group of 25-34 years. 62.5% residents had done a PC rotation prior to answering the survey and they were more comfortable in initiating goals of care (GOC) discussion for these patients. More residents were comfortable communicating the prognosis of patients with HF as compared to cancer patients irrespective of the level of training. Of the 26 residents interested in pursuing cardiology as a subspecialty, only 5 (19.2%) thought that the 5-year mortality of advanced HF ≥50%. Conclusions: Physicians often underestimate the symptom burden and mortality of HF patients and are less likely to consult PC for them. Early integration of PC in the management of HF patients is recommended and physicians need to be educated on these guidelines. [Table: see text]


2018 ◽  
Vol 34 (2) ◽  
pp. 103-110 ◽  
Author(s):  
Imatullah Akyar ◽  
J. Nicholas Dionne-Odom ◽  
Marie A. Bakitas

Objective: Models of early, community-based palliative care for individuals with New York Heart Association (NYHA) class III/IV heart failure and their families are lacking. We used the Medical Research Council process of developing complex interventions to conduct a formative evaluation study to translate an early palliative care intervention from cancer to heart failure. Method: One component of the parent formative evaluation pilot study was qualitative satisfaction interviews with 8 patient–caregiver dyad participants who completed Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare For Patient and Caregivers (ENABLE CHF-PC) intervention. The ENABLE CHF-PC consists of an in-person palliative care assessment, weekly telehealth coaching sessions, and monthly follow-up. Subsequent to completing the coaching sessions, patient and caregiver participants were interviewed to elicit their experiences with ENABLE CHF-PC. Digitally recorded interviews were transcribed and analyzed using a thematic approach. Results: Patients (n = 8) mean age was 67.3, 62.5% were female, 75% were married/living with a partner; caregivers (n = 8) mean age was 56.8, and 87.5% were female. Four themes related to experiences with ENABLE CHF-PC included “allowed me to vent,” “gained perspective,” “helped me plan,” and “gained illness management and decision-making skills.” Recommendations for intervention modification included (1) start program at diagnosis, (2) maintain phone-based approach, and (3) expand topics and modify format. Conclusion: Patients and caregivers unanimously found the intervention to be helpful and acceptable. After incorporating modifications, ENABLE CHF-PC is currently undergoing efficacy testing in a large randomized controlled trial.


2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Anecita P. Fadol ◽  
Ashley Patel ◽  
Valerie Shelton ◽  
Kate J. Krause ◽  
Eduardo Bruera ◽  
...  

Abstract Background Cardiotoxicity resulting in heart failure (HF) is among the most dreaded complications of cancer therapy and can significantly impact morbidity and mortality. Leading professional societies in cardiology and oncology recommend improved access to hospice and palliative care (PC) for patients with cancer and advanced HF. However, there is a paucity of published literature on the use of PC in cardio-oncology, particularly in patients with HF and a concurrent diagnosis of cancer. Aims To identify existing criteria for referral to and early integration of PC in the management of cases of patients with cancer and patients with HF, and to identify assessments of outcomes of PC intervention that overlap between patients with cancer and patients with HF. Design Systematic literature review on PC in patients with HF and in patients with cancer. Data sources Databases including Ovid Medline, Ovid Embase, Cochrane Library, and Web of Science from January 2009 to September 2020. Results Sixteen studies of PC in cancer and 14 studies of PC in HF were identified after screening of the 8647 retrieved citations. Cancer and HF share similarities in their patient-reported symptoms, quality of life, symptom burden, social support needs, readmission rates, and mortality. Conclusion The literature supports the integration of PC into oncology and cardiology practices, which has shown significant benefit to patients, caregivers, and the healthcare system alike. Incorporating PC in cardio-oncology, particularly in the management of HF in patients with cancer, as early as at diagnosis, will enable patients, family members, and healthcare professionals to make informed decisions about various treatments and end-of-life care and provide an opportunity for patients to participate in the decisions about how they will spend their final days.


Blood ◽  
2005 ◽  
Vol 106 (11) ◽  
pp. 1869-1869
Author(s):  
Ricardo Pavanello ◽  
James B. Froehlich ◽  
Victor Tapson ◽  
Jean-Francois Bergmann ◽  
Mashio Nakamura ◽  
...  

Abstract Background Acutely ill medical patients with heart failure have an increased risk for venous thromboembolism (VTE) and expert consensus guidelines recommend that they should receive VTE prophylaxis. However, little data is available on physician’s practices for providing prophylaxis to these patients. Our aim was to characterize VTE prophylaxis practices in acutely ill hospitalized medical patients with heart failure (NYHA class III or IV) enrolled in the International Medical Prevention Registry on Venous Thromboembolism (IMPROVE). Methods Patient recruitment began in July 2002. Patients aged ≥ 18 years and hospitalized for ≥ 3 days with an acute medical illness are enrolled consecutively. Exclusion criteria are: therapeutic antithrombotic agents or thrombolytics at admission, major surgery or trauma during 3 months prior to admission, and VTE treatment within 24 hours of admission. Results Of 6946 patients enrolled up to 31 March 2005 in 49 hospitals in 12 countries, 784 (11%) were heart failure patients. Compared with patients without heart failure, patients with heart failure were more likely to be in an ICU/CCU (13% vs 8%), immobile ≥ 4days (50% vs 30%), over 60 years old (85% vs 61%), perceived to be obese (20% vs 13%), or have respiratory failure (27% vs 17%; p<0.0001 for all). In total, only 51% of heart failure patients received pharmacologic prophylaxis and 61% received any type of prophylaxis. Pharmacologic prophylaxis type varied by region with low-molecular-weight heparin (LMWH) used less often, and unfractionated heparin (UFH) used more often in the USA compared with other participating countries (see Table). Aspirin and warfarin were used as VTE prophylaxis in 6% and 3% of heart failure patients, respectively. Intermittent pneumatic compression (IPC) was used more often in the USA than in other countries (24% vs 0.2%). Conclusions Although acutely ill medical patients with heart failure are at risk of VTE and should receive prophylaxis, only 61% of these patients in IMPROVE actually received any type of prophylaxis. This reflects poor physician-awareness of the benefits of prophylaxis in this patient group and suggests that significant opportunity exists to improve physician practices. Table. VTE prophylaxis in acutely ill medical patients with heart failure VTE prophylaxis (% patients) USA Other participating countries LMWH 15 46 UFH 27 13 Aspirin 8 4 Warfarin 5 1 Any pharmacologic prophylaxis 43 56 IPC 24 0.2 Elastic stockings 6 7


2017 ◽  
Vol 17 (1) ◽  
pp. 54-65 ◽  
Author(s):  
Jonna Norman ◽  
Michael Fu ◽  
Inger Ekman ◽  
Lena Björck ◽  
Kristin Falk

Aims: Despite treatment recommended by guidelines, many patients with chronic heart failure remain symptomatic. Evidence is accumulating that mindfulness-based interventions (MBIs) have beneficial psychological and physiological effects. The aim of this study was to explore the feasibility of MBI on symptoms and signs in patients with chronic heart failure in outpatient clinical settings. Methods: A prospective feasibility study. Fifty stable but symptomatic patients with chronic heart failure, despite optimized guideline-recommended treatment, were enrolled at baseline. In total, 40 participants (median age 76 years; New York Heart Association (NYHA) classification II−III) adhered to the study. Most patients ( n=17) were randomized into MBI, a structured eight-week mindfulness-based educational and training programme, or controls with usual care ( n=16). Primary outcome was self-reported fatigue on the Fatigue severity scale. Secondary outcomes were self-reported sleep quality, unsteadiness/dizziness, NYHA functional classification, walking distance in the six-minute walk test, and heart and respiratory rates. The Mann–Whitney U test was used to analyse median sum changes from baseline to follow-up (week 10±1). Results: Compared with usual care (zero change), MBI significantly reduced the self-reported impact of fatigue (effect size −8.0; p=0.0165), symptoms of unsteadiness/dizziness ( p=0.0390) and breathlessness/tiredness related to physical functioning (NYHA class) ( p=0.0087). No adverse effects were found. Conclusions: In stable but symptomatic outpatients with chronic heart failure, MBI alleviated self-reported symptoms in addition to conventional treatment. The sample size is small and further studies are needed, but findings support the role of MBI as a feasible complementary option, both clinically and as home-based treatment, which might contribute to reduction of the symptom burden in patients diagnosed with chronic heart failure.


2019 ◽  
Author(s):  
Malin Östman ◽  
Siv Bäck-Pettersson ◽  
Ann-Helén Sandvik ◽  
Annelie J Sundler

Abstract Background Heart failure (HF) is a chronic condition with a variety of diverse symptoms. Patients with HF are usually elderly with multimorbidity, which are both multifaceted and challenging. Being a next of kin to patients with HF is described as a complex task consisting of managing care and treatment, monitoring illness and being an emotional support, while also being able to navigate the healthcare system especially in long-term contact. However, few studies have investigated next of kin's perceptions of continuity of care in connection with HF. The present study aimed to describe continuity of care as perceived by the next of kin who care for patients with HF. Methods This study used a qualitative descriptive design. Semi-structured interviews were conducted with the next of kin (n=15) of patients with HF to obtain their perceptions of continuity of care. A phenomenographic analysis method was used to capture the participants' perceptions of the phenomenon. Results The analysis reveals that the next of kin perceive that support from healthcare professionals was strongly associated with experiences of continuity of care. Four categories reveal the next of kin's perceptions of continuity of care: Want to be involved without being in charge; A desire to be in control without acting as the driving force in the care situation; A need for sustainability without being overlooked; and Focusing on making life meaningful while being preoccupied with caregiving activities. Conclusions Next of kin perceive continuity of care, when having access to care and treatment, when the caregivers collaborate, regardless of who is currently responsible for the care. A feeling of “being in good hands” summarise the need for continuous support and seamless transitions between caregivers in the care process. Consequently, to improve the development of evidence-based HF care, there is a call for collaboration models where caregivers from primary care, hospital, and home health care as well as patients and next of kin participate. Keywords Continuity of care, Heart failure, Next of kin, Phenomenography, Qualitative research


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