What is Quality End-of-Life Care for Patients With Heart Failure? A Qualitative Study With Physicians.
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ABSTRACT:
SUBMITTER: Hutchinson RN
PROVIDER: S-EPMC7727006 | biostudies-literature | 2020 Sep
REPOSITORIES: biostudies-literature
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What is Quality End-of-Life Care for Patients With Heart Failure? A Qualitative Study With Physicians.
Hutchinson Rebecca N RN Gutheil Caitlin C Wessler Benjamin S BS Prevatt Hayley H Sawyer Douglas B DB Han Paul K J PKJ
Journal of the American Heart Association 20200831 18
Background Advanced heart failure (AHF) carries a morbidity and mortality that are similar or worse than many advanced cancers. Despite this, there are no accepted quality metrics for end-of-life (EOL) care for patients with AHF. Methods and Results As a first step toward identifying quality measures, we performed a qualitative study with 23 physicians who care for patients with AHF. Individual, in-depth, semistructured interviews explored physicians' perceptions of characteristics of high-quali ...[more]
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Project description:AimsEarly engagement in advance care planning (ACP) is recommended in heart failure (HF) management. We investigated the preferences of patients with HF regarding ACP and end-of-life (EOL) care, including their desired timing of ACP initiation.Methods and resultsData were collected using a 92-item questionnaire survey, which was directly distributed to hospitalized patients by dedicated physicians and nurses in a university hospital setting. One-hundred eighty-seven patients agreed to participate (response rate: 92.6%), and 171 completed the survey [valid response rate: 84.7%; men: 67.3%; median age: 73.0 (63.0-81.0) years]. Logistic regression analyses were conducted to identify the predictors of positive attitudes towards ACP. Most recognized ACP as important for their care (n = 127, 74.3%), 48.1% stated that ACP should be initiated after repeated HF hospitalizations in the past year, and 29.0% preferred ACP to begin during the first or second HF hospitalization. Only 21.7% of patients had previously engaged in ACP conversations during HF management. Positive attitudes towards ACP were associated with lower depressive symptoms [two-item Patient Health Questionnaire; odds ratio (OR): 0.75, 95% confidence interval (CI): 0.61-0.92, P-value: 0.006], marriage (OR: 2.53, 95% CI: 1.25-5.12, P-value: 0.010), and a high educational level (OR: 2.66, 95% CI: 1.28-5.56, P-value: 0.009), but not with severity of HF (represented by Seattle Heart Failure Model risk score). Regarding EOL care, while 'Saying what one wants to tell loved ones' (83.4%), 'Dying a natural death' (81.8%), and 'Being able to stay at one's favorite place' (75.6%) were the three most important factors for patients, preferences for 'Receiving sufficient treatment' (56.5%) and 'Knowing what to expect about future condition' (50.3%) were divergent.ConclusionsDespite patients' preferences for ACP conversations, there was a discrepancy between preference and engagement in ACP among patients hospitalized for HF. Patients' preferences regarding EOL care may differ; physicians need to consider the appropriate ACP approach to align with patients' care goals.
| S-EPMC8712895 | biostudies-literature
Project description:BACKGROUND:Although guidelines call on clinicians to conduct regular conversations about advance care planning and end-of-life (EOL) preferences with patients with heart failure (HF), research suggests that physicians often avoid these discussions. METHODS AND RESULTS:From January 20, 2014, to January 18, 2016, Southeastern Minnesota residents hospitalized with acute decompensated HF (ADHF) at Mayo Clinic hospitals were enrolled into an observational cohort study that included the administration of face-to-face questionnaires. Risk of death (prognosis) was estimated using the Meta-analysis Global Group in Chronic Heart Failure score. Among 400 patients (mean age 77.7 years, 46% female, 48% preserved ejection fraction), only 69 (17%) reported previously discussing EOL wishes with their physician. Patients reporting EOL discussions more often had an advance directive (81% vs 66%; P?=?.009), recognized the term "hospice" (96% vs 87%; P?=?.027), and had more favorable attitudes of dying and hospice (P?=?.030). Resuscitation preferences and rates of completion of advance directives varied with prognosis, although patient-clinician EOL discussions did not. CONCLUSIONS:The majority of patients hospitalized with ADHF did not recall discussing their preferences for EOL care with their physician. This represents an important modifiable gap in the optimal longitudinal care of HF patients.
| S-EPMC5671349 | biostudies-literature
Project description:People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.Qualitative study using in-depth interviews and analysed using thematic analysis.Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
| S-EPMC5625846 | biostudies-other
Project description:BackgroundOnly a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care.MethodsThis was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019.ResultsFour themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient's condition, managing the patient's symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care.ConclusionsSeveral issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.
| S-EPMC6915891 | biostudies-literature
Project description:AimsIn patients with palliative end-stage heart failure, interventions that could provide symptomatic relief and prevent hospital admissions are important. Ambulatory continuous intravenous inotropes have been advocated by guidelines for such a purpose. We sought to determine the effect of intravenous dobutamine on symptomatic status, hospital stay, mortality, and cost expenditure.Methods and resultsAll consecutive end-stage heart failure patients not amenable for advanced therapies and discharged with continuous intravenous home dobutamine from a single tertiary centre between April 2011 and January 2017 were retrospectively analysed. Dobutamine (fixed dose) was infused through a single-lumen central venous catheter with a small pump that was refilled by a nurse on a daily basis. Symptomatic status was longitudinally assessed as the change in New York Heart Association class and patient global assessment scale. Antecedent and incident heart failure hospitalizations were determined in a paired fashion, and cost impact was assessed. A total of 21 patients (age 77 ± 9 years) were followed up for 869 ± 647 days. At first follow-up (6 ± 1 weeks) after the initiation of dobutamine, patients had a significant improvement in New York Heart Association class (-1.29 ± 0.64; P < 0.001), global assessment scale (<0.001), and N-terminal pro-brain natriuretic peptide (6247 vs. 2543 pg/mL; P = 0.033). Incident heart failure hospitalizations assessed at 3, 6, and 12 months were significantly reduced (P < 0.001 for all) in comparison with antecedent heart failure hospitalizations over the same time period. Cost expenditure was significantly lower at 3 (P < 0.001), 6 (P = 0.005), and 12 months (P = 0.001) after initiation of dobutamine. Mortality rate at 1 year was 48% with 9/12 (75%) patients dying at home, most often from progressive pump failure.ConclusionsContinuous intravenous home dobutamine in patients with palliative end-stage heart failure is feasible and associated with improved symptomatic status, heart failure hospitalizations, and health-care-related costs. Nevertheless, results should be interpreted in the context of the small and retrospective design. Larger studies are necessary to evaluate the effect of dobutamine in palliative end-stage heart failure.
| S-EPMC6073033 | biostudies-literature
Project description:Background: Information regarding short-term vital prognosis in patients with heart failure at advanced stages of the disease is scarce. Objective: To develop a three-month mortality predictive model for patients with advanced heart failure. Methods: Prospective observational study carried out in primary care and a convalescence community facility. Heart failure patients either New York Heart Association (NYHA) III with at least two HF hospitalizations during the previous six months or NYHA IV with/without previous recent hospitalization were included in the study. Multivariable predictive models using Cox regression were performed. Results: Of 271 patients included, 55 (20.3%) died during the first three months of follow-up. Mean age was 84.2 years (SD 8.3) and 59.8% were women. Predictive model including NT-proBNP had a C-index of 0.78 (95% CI 0.71; 0.85) and identified male gender, low body mass index, high potassium and NT-proBNP levels, and moderate-to-severe dependence for daily living activities (Barthel index < 40) as risk factors of mortality. In the model without NT-proBNP, C index was 0.72 (95% CI 0.64; 0.79) and, in addition to gender, body mass index, low Barthel index, and severe reductions in glomerular filtration rate showed the highest predictive hazard ratios for short-term mortality. Conclusions: In addition to age, male gender, potassium levels, low body mass index, and low glomerular filtration, dependence for activities of daily living add strong power to predict mortality at three months in patients with advanced heart failure.
| S-EPMC9101156 | biostudies-literature
Project description:ImportanceThe idea that physicians as patients choose less-aggressive care at the end of life for themselves is an often-cited rationale to advocate for less technology-laden end-of-life care.ObjectiveTo assess end-of-life care received by physicians compared with nonphysicians in a system with universal health care.Design, setting, and participantsIn this population-level decedent cohort study of data from April 1, 2004, through March 31, 2015 (fiscal years 2004-2014), in Ontario, Canada, 2507 physicians were matched approximately 1:3 to 7513 nonphysicians (ie, individuals who never were registered as a physician with the College of Physicians and Surgeons of Ontario) according to age, sex, income quintile, and location of residence.Main outcomes and measuresThe primary outcome was location of death. Other outcomes included measures of health care use in the last 6 months of life. Differences were assessed using Poisson regression with robust error variances, adjusting for the Charlson Comorbidity Index.ResultsIn total, 2516 physicians and 954 836 nonphysicians died between April 1, 2004, and March 31, 2015, in Ontario; 2247 physicians (89.3%) and 474 182 nonphysicians (49.7%) were men. The median (interquartile range) age at death was 82 (74-87) years for the physicians and 80 (68-87) years for the nonphysicians. After matching, data for 2507 physicians and 7513 nonphysicians were analyzed. For physicians, the risk of death at home was no different from that for nonphysicians (42.8% vs 39.0%; adjusted relative risk [aRR], 1.04; 95% CI, 0.99-1.09), but the risk of death in an intensive care unit was increased (11.9% vs 10.0%; aRR, 1.22; 95% CI, 1.08-1.39). In the prior 6 months, physicians had a decreased risk of an emergency department visit (73.0% vs 78.4%; aRR, 0.96; 95% CI, 0.94-0.98) but increased risks of an intensive care unit admission (20.8% vs 19.1%; aRR, 1.14; 95% CI, 1.05-1.24) and of receipt of palliative care services (52.9% vs 47.4%; aRR, 1.18; 95% CI, 1.13-1.23). Among a subgroup of 457 physicians and 1347 nonphysicians with cancer, the risk of death at home or intensive care unit was increased (37.6% vs 28.6%; aRR, 1.30; 95% CI, 1.13-1.50), as was the risk of receiving chemotherapy in the last 6 months of life.Conclusions and relevanceThere was no difference overall for physicians compared with nonphysicians in terms of the likelihood of dying at home; physicians were more likely to die in an intensive care unit and to receive chemotherapy, but also to receive palliative care services. These findings suggest that physicians do not consistently opt for less-aggressive care but instead receive end-of-life care that includes both intensive and palliative care. These findings inform a more nuanced perspective of what physicians may perceive to be optimal care at the end of life.
| S-EPMC6659139 | biostudies-literature
Project description:Background. The decision to receive a permanent left ventricular assist device (LVAD) to treat end-stage heart failure (HF) involves understanding and weighing the risks and benefits of a highly invasive treatment. The goal of this study was to characterize end-stage HF patients across parameters that may affect their decision making and to inform the development of an LVAD decision support tool. Methods. A survey of 35 end-stage HF patients at an LVAD implant hospital was performed to characterize their information-seeking habits, interaction with physicians, technology use, numeracy, and concerns about their health. Survey responses were analyzed using descriptive statistics, grounded theory method, and Bayesian network learning. Results. Most patients indicated an interest in using some type of decision support tool (roadmap of health progression: 46%, n = 16; personal prognosis: 51%, n = 18; short videos of patients telling stories of their experiences with an LVAD: 57%, n = 20). Information patients desired in a hypothetical decision support tool fell into the following topics: prognoses for health outcomes, technical information seeking, expressing emotions, and treatment decisions. Desire for understanding their condition was closely related to whether they had difficult interpreting their electronic medical record in the past. Conclusions. Most patients reported interest in engaging in their health care decision making and seeing their prognosis and electronic health record information. Patients who were less interested in their own treatment decisions were characterized by having less success understanding their health information. Design of a decision support tool for potential LVAD patients should consider a spectrum of health literacy and include information beyond the technical specifications of LVAD support.
| S-EPMC6699010 | biostudies-literature
Project description:There is abundant research indicating poor physical, psychological, and social functioning of patients with chronic heart failure (HF), a reality that can lead to poor health-related quality of life (QoL). Little is known about the experience of rural patients with HF.This study was part of a randomized clinical trial titled Rural Education to Improve Outcomes in Heart Failure (REMOTE-HF) designed to test an education and counseling intervention to improve self-care in patients with HF. We evaluated 612 rural patients. Multiple validated questionnaires were administered to assess patient perceptions of health and health literacy. Baseline factors were collected and compared with baseline QoL measures only. Patients' health-related QoL was assessed using the Minnesota Living with Heart Failure scale. The data were analyzed using a general linear model to test the association of various patient characteristics with QoL in rural patients with HF. Patients were 65.8 (+12.9) years of age. The majority were men (58.7%), married (56.4%), and had completed a high-school education (80.9%). Factors associated with reduced QoL among this population include geographic location, younger age, male sex, higher New York Heart Association class, worse HF knowledge, poorer perceived control, and symptoms of depression or anxiety. The data provided no evidence of an association between left ventricular ejection fraction and QoL.This study of rural patients with HF confirms previously identified factors associated with perceptions of QoL. However, further study is warranted with an urban control group.http://www.clinicaltrials.gov. Unique identifier: NCT00415545.
| S-EPMC4241136 | biostudies-literature
Project description:OBJECTIVES:General practitioners (GPs) play a key role in heart failure (HF) management. Despite multiple guidelines, the management of patients with HF in primary care is suboptimal. Therefore, all the qualitative evidence concerning GPs' perceptions of managing HF in primary care was synthesised to identify barriers and facilitators for optimal care, and ideas for improvement. DESIGN:Qualitative evidence synthesis. METHODS:Searches of MEDLINE, EMBASE, Web of Science and CINAHL databases up to 20/12/2015 were conducted. The Critical Appraisal Skills Programme's checklist for qualitative research was used for quality assessment. Thematic analysis was used as method of analysis. RESULTS:Of 5427 articles, 18 qualitative articles were included. Findings were organised in HF-specific factors, patient factors, physician factors and contextual factors. GPs' uncertainty in all areas of HF management was highlighted. HF management started with an uncertain diagnosis, leading to difficulties with communication, treatment and advance care planning. Lack of access to specialised care and lack of knowledge were identified as important contributors to this uncertainty. In an effort to overcome this, strategies bringing evidence into practice should be promoted. GPs expressed the need for a multidisciplinary chronic care approach for HF. However, mixed experiences were noted with regard to interprofessional collaboration. CONCLUSIONS:The main challenges identified in this synthesis were how to deal with GPs' uncertainty about clinical practice, how to bring evidence into practice and how to work together as a multiprofessional team. These barriers were situated predominantly on the physician and contextual level. Targets to improve GPs' HF care were identified.
| S-EPMC5168518 | biostudies-other