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Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians.

ABSTRACT: BACKGROUND:Patients with heart failure have end-of-life care needs that may benefit from hospice care. The goal of this descriptive study was to understand hospice clinicians' perspectives on the unique aspects of caring for patients with heart failure to inform approaches to improving end-of-life care. METHODS:This qualitative study explored experiences, observations, and perspectives of hospice clinicians regarding hospice care for patients with heart failure. Thirteen hospice clinicians from a variety of professional disciplines and clinical roles, diverse geographic regions, and varying lengths of time working in hospice participated in semistructured interviews. Through team-based, iterative qualitative analysis, we identified 3 major themes. RESULTS:Hospice clinicians identified 3 themes regarding care for patients with heart failure. First, care for patients with heart failure involves clinical complexity and a tailored approach to cardiac medications and advanced cardiac technologies. Second, hospice clinicians describe the difficulty patients with heart failure have in trusting hospice care due to patient optimism, prognostic uncertainty, and reliance on prehospice health care providers. Third, hospice clinicians described opportunities to improve heart failure-specific hospice care, highlighting the desire for collaboration with referring cardiologists. CONCLUSIONS:From a hospice clinician perspective, caring for patients with heart failure is unique compared with other hospice populations. This study suggests potential opportunities for hospice clinicians and referring providers who seek to collaborate to improve care for patients with heart failure during the transition to hospice care.

SUBMITTER: Lum HD

PROVIDER: S-EPMC4575769 | biostudies-literature | 2015 Sep

REPOSITORIES: biostudies-literature

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Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians.

Lum Hillary D HD Jones Jacqueline J Lahoff Dana D Allen Larry A LA Bekelman David B DB Kutner Jean S JS Matlock Daniel D DD

American heart journal 20150702 3

<h4>Background</h4>Patients with heart failure have end-of-life care needs that may benefit from hospice care. The goal of this descriptive study was to understand hospice clinicians' perspectives on the unique aspects of caring for patients with heart failure to inform approaches to improving end-of-life care.<h4>Methods</h4>This qualitative study explored experiences, observations, and perspectives of hospice clinicians regarding hospice care for patients with heart failure. Thirteen hospice c ...[more]

PMID: 26385036

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Project description:ObjectivesThis study identified sociodemographic and clinical factors that predicted live discharge among home hospice patients with heart failure, and related these findings to perspectives among health care providers about challenges to caring for these patients.BackgroundHospice patients with heart failure are frequently discharged from hospice before death ("live discharge"). However, little is known about the factors and circumstances associated with live discharge among patients with heart failure.MethodsQuantitative analyses of patient medical records (N = 1,498) and qualitative interviews were performed with health care providers (n = 19) at a not-for-profit hospice agency in New York City.ResultsThirty percent of home hospice patients with heart failure experienced a live discharge, most frequently due to 911 calls that led to acute hospitalization. The odds of acute hospitalization were higher for younger patients (age 18 to 74 years: adjusted odds ratio [AOR]: 2.10; 95% confidence interval [CI]: 1.34 to 3.28), African American (AOR: 2.06; 95% CI: 1.31 to 3.24) or Hispanic (AOR: 2.99; 95% CI: 1.99 to 4.50) patients, and higher functioning patients (Palliative Performance Scores of 50% to 70%; AOR: 5.68; 95% CI: 3.66 to 8.79). Qualitative interviews with health care providers highlighted the unique characteristics of heart failure (e.g., sudden changes in patients' condition), the importance of patients' understanding of hospice and their own prognosis, and the role of sociocultural and family context in precipitating and potentially preventing live discharge (e.g., absence of social supports in the home).ConclusionsLive discharge from hospice, especially due to acute hospitalization, is common with heart failure. Greater attention is needed for patients' knowledge of and readiness for hospice care, especially among younger and diverse populations, and for factors related to the social and family context in which hospice care is provided.

Project description:Rationale & objectiveGreater understanding of the challenges to shared decision making about treatment of advanced chronic kidney disease (CKD) is needed to support implementation of shared decision making in clinical practice.Study designQualitative study.Setting & participantsPatients aged≥65 years with advanced CKD and their clinicians recruited from 3 medical centers participated in semi-structured interviews. In-depth review of patients' electronic medical records was also performed.Analytical approachInterview transcripts and medical record notes were analyzed using inductive thematic analysis.ResultsTwenty-nine patients (age 73±6 years, 66% male, 59% White) and 10 of their clinicians (age 52±12 years, 30% male, 70% White) participated in interviews. Four themes emerged from qualitative analysis: (1) competing priorities-patients and their clinicians tended to differ on when to prioritize CKD and dialysis planning above other personal or medical problems; (2) focusing on present or future-patients were more focused on living well now while clinicians were more focused on preparing for dialysis and future adverse events; (3) standardized versus individualized approach to CKD-although clinicians tried to personalize care recommendations to their patients, the patients perceived their clinicians as taking a monolithic approach to CKD that was predicated on clinical practice guidelines and medical literature rather than the patients' lived experiences with CKD and personal values and goals; and (4) power dynamics-patients described cautiously navigating a power differential in their therapeutic relationship with their clinicians whereas clinicians seemed less attuned to these power dynamics.LimitationsThematic saturation was based on patient interviews. Themes presented might incompletely reflect clinicians' perspectives.ConclusionsEfforts to improve shared decision making for treatment of advanced CKD will likely need to explicitly address differences between patients and their clinicians in approaches to decision making about treatment of advanced CKD and perceived power imbalances in the therapeutic relationship.

Project description:BackgroundHeart failure patients have high 30-day hospital readmission rates. Interventions designed to prevent readmissions have had mixed success. Understanding heart failure home management through the patient's experience may reframe the readmission "problem" and, ultimately, inform alternative strategies.ObjectiveTo understand patient and caregiver challenges to heart failure home management and perceived reasons for readmission.DesignObservational qualitative study.ParticipantsHeart failure patients were recruited from two hospitals and included those who were hospitalized for heart failure at least twice within 30 days and those who had been recently discharged after their first heart failure admission.ApproachOpen-ended, semi-structured interviews. Conclusions vetted using focus groups.Key resultsSemi-structured interviews with 31 patients revealed a combination of physical and socio-emotional influences on patients' home heart failure management. Major themes identified were home management as a struggle between adherence and adaptation, and hospital readmission as a rational choice in response to distressing symptoms. Patients identified uncertainty regarding recommendations, caused by unclear instructions and temporal incongruence between behavior and symptom onset. This uncertainty impaired their competence in making routine management decisions, resulting in a cycle of limit testing and decreasing adherence. Patients reported experiencing hopelessness and frustration in response to perceiving a deteriorating functional status. This led some to a cycle of despair characterized by worsening adherence and negative emotions. As these cycles progressed and distressing symptoms worsened, patients viewed the hospital as the safest place for recovery and not a "negative" outcome.ConclusionCycles of limit testing and despair represent important patient-centered struggles in managing heart failure. The resulting distress and fear make readmission a rational choice for patients rather than a negative outcome. Interventions (e.g., palliative care) that focus on methods to address these patient-centered factors should be further studied rather than methods to reduce hospital readmissions.

Project description:BackgroundHeart failure (HF) affects many older individuals in North America, with recurrent hospitalizations despite postdischarge strategies to prevent readmission. Proper HF self-care can potentially lead to better clinical outcomes, yet many older patients find self-care challenging. Mobile health (mHealth) apps can provide support to patients with respect to HF self-care. However, many mHealth apps are not designed to consider potential patient barriers, such as literacy, numeracy, and cognitive impairment, leading to challenges for older patients. We previously demonstrated that a paper-based standardized diuretic decision support tool (SDDST) with daily weights and adjustment of diuretic dose led to improved self-care.ObjectiveThe aim of this study is to better understand the self-care challenges that older patients with HF and their informal care providers (CPs) face on a daily basis, leading to the conversion of the SDDST into a user-centered mHealth app.MethodsWe recruited 14 patients (male: 8/14, 57%) with a confirmed diagnosis of HF, aged ≥60 years, and 7 CPs from the HF clinic and the cardiology ward at the Hamilton General Hospital. Patients were categorized into 3 groups based on the self-care heart failure index: patients with adequate self-care, patients with inadequate self-care without a CP, or patients with inadequate self-care with a CP. We conducted semistructured interviews with patients and their CPs using persona-scenarios. Interviews were transcribed verbatim and analyzed for emerging themes using an inductive approach.ResultsSix themes were identified: usability of technology, communication, app customization, complexity of self-care, usefulness of HF-related information, and long-term use and cost. Many of the challenges patients and CPs reported involved their unfamiliarity with technology and the lack of incentive for its use. However, participants were supportive and more likely to actively use the HF app when informed of the intervention's inclusion of volunteer and nurse assistance.ConclusionsPatients with varying self-care adequacy levels were willing to use an mHealth app if it was simple in its functionality and user interface. To promote the adoption and usability of these tools, patients confirmed the need for researchers to engage with end users before developing an app. Findings from this study can be used to help inform the design of an mHealth app to ensure that it is adapted for the needs of older individuals with HF.

Dataset Information

Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians.

Publications

Unique challenges of hospice for patients with heart failure: A qualitative study of hospice clinicians.

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