Clinician Insights into Effective Components, Delivery Characteristics and Implementation Strategies of Ambulatory Palliative Care for People with Heart Failure: A Qualitative Analysis.

OBJECTIVES: To elicit perspectives from specialist palliative care (SPC) and cardiology clinicians concerning the necessary components, delivery characteristics and implementation strategies of successful ambulatory SPC for people with heart failure (HF). BACKGROUND: Palliative care is a recommended component of guideline-directed care for people with HF. However, optimal strategies to implement SPC within ambulatory settings are unknown. METHODS: We conducted a qualitative descriptive study composed of semistructured interviews with SPC and cardiology clinicians at Veterans Affairs Medical Centers (VAMCs) with the highest number of ambulatory SPC consultations within the VA system among people with HF between 2021 and 2022. Clinicians were asked how they provided ambulatory SPC and what they felt were the necessary components, delivery characteristics and implementation strategies of care delivery. Interviews were analyzed using directed content analysis. RESULTS: We interviewed 14 SPC clinicians and 9 cardiology clinicians at 7 national VAMCs; 43% were physicians, and 48% were advanced-practice registered nurses/physician associates. Essential components of ambulatory SPC encompassed discussion of goals of care (eg, prognosis, advance directives) and connecting patients/caregivers to resources (eg, home care). Preferred delivery characteristics included integrated (ie, embedded) approaches to SPC delivery, standardized patient selection and referral procedures, and formalized procedures for handoffs to and from SPC. Strategies that addressed SPC implementation included deploying palliative champions, educating non-SPC clinicians on the value of ambulatory SPC for people with HF and developing ambulatory models through leadership support. CONCLUSIONS/IMPLICATIONS: Facilitating the broader adoption of ambulatory SPC among people with HF may be achieved by prioritizing these mutually valued and necessary features of SPC delivery.

Uncertainty and Communication Preferences Among Patients Undergoing Lung Transplant Evaluation: A Mixed-Methods Study.

OBJECTIVE: Higher uncertainty is associated with poorer quality of life and may be impacted by clinician communication about the future. We determined how patients undergoing lung transplant evaluation experience uncertainty and communication about the future from clinicians. METHODS: We performed a convergent parallel mixed-methods study using a cross-sectional survey and semistructured interviews. Patients undergoing lung transplant evaluation at the University of Colorado and the University of Washington answered questions about future communication and completed the Mishel Uncertainty in Illness Scale-Adult (MUIS-A; range 33-165, higher scores indicate more uncertainty). Interviews were analyzed using content analysis. Integration of survey and interview results occurred during data interpretation. RESULTS: A total of 101 patients completed the survey (response rate: 47%). Twelve survey participants completed interviews. In the survey, most patients identified changing family roles as important (76%), which was infrequently discussed with clinicians (31%). Most patients (86%) worried about the quality of their life in the future, and 74% said that not knowing what to expect in the future prevented them from making plans. The mean MUIS-A score was 85.5 (standard deviation 15.3). Interviews revealed three themes: (1) uncertainty of the future distresses participants; (2) participants want practical information from clinicians; and (3) communication preferences vary among participants. CONCLUSION: Participants experienced distressing uncertainty and wanted information about the future. Communication topics that were important to participants were not always addressed by physicians. Clinicians should address how chronic lung disease and lung transplant can directly impact patients' lives and support patients to cope with uncertainty.

Communication processes in an advance care planning initiative: A socio-ecological perspective for service evaluation.

BACKGROUND: Advance care planning initiatives are becoming more widespread, increasing expectations for providers to engage in goals of care conversations. However, less is known about how providers communicate advance care planning within and throughout a health care system. AIM: To explore perspectives of communication processes in the rollout of an advance care planning initiative. DESIGN: Theoretically informed secondary analysis of 31 semi-structured interviews. SETTING/PARTICIPANTS: Key partners in a Veterans Health Administration goals of care initiative. RESULTS: Using the constant comparative approach followed by qualitative mapping of themes to the layers of the Socio-Ecological Model, four themes and corresponding Socio-Ecological layers were identified: Goals of Care Communication Training (Policy, Community, and Institutional) requires more resources across sites and better messaging to reduce provider misconceptions and promote an institutional culture invested in advance care planning; Interprofessional Communication (Interpersonal) suggests care team coordination is needed to facilitate continuity in goals of care messaging; Communication in Documentation (Institutional, Interpersonal, and Intrapersonal) highlights the need for capturing the context for goals of care preferences; and Patient/Family Communication (Interpersonal and Intrapersonal) encourages offering materials and informational resources early to facilitate rapport building and readiness to determine goals of care. CONCLUSIONS: Findings support the need for initiatives to incorporate an evaluation of how goals of care are discussed beyond the interpersonal exchange between patient and provider and signal opportunities for applying the Socio-Ecological Model to better understand goals of care communication processes, including opportunities to improve initiation and documentation of goals of care.

Relationship Status and Quality Are Associated With Perceived Benefits of Caregiving for People With Heart Failure.

BACKGROUND: "Benefit finding" is a strengths-based strategy for coping with medical illness that may be particularly useful for caregivers of people with heart failure given the highly fluctuating disease course. OBJECTIVE: The aim of this study was to investigate benefit finding's association with the caregiver-care recipient relationship, depression, and burden at baseline and longitudinally. METHODS: This is a longitudinal observational study of caregivers' benefit finding, relationship quality, depression, and burden. Correlation and multiple regression analyses identify baseline associations and predictors of 12-month change in benefit finding. RESULTS: At baseline (n = 100; median, 60 years [interquartile range, 46-69]; 81% female, 70% partner/spouse), increased benefit finding correlated with higher relationship quality (r = 0.53; 95% confidence interval [CI], 0.38-0.67), lower depression (r = -0.33; 95% CI, -0.49 to -0.14), and lower burden (r = -0.31; 95% CI, -0.47 to -0.11). Twelve-month change in benefit finding was predicted by change in relationship quality (ß = 7.12; 95% CI, 0.62-13.61) but not depression or burden. CONCLUSIONS: Relationship quality and benefit finding changed together over time. Interventions strengthening the caregiver-care recipient bond may be especially impactful for heart failure caregivers.

Nurse and Social Worker Palliative Telecare Team and Quality of Life in Patients With COPD, Heart Failure, or Interstitial Lung Disease: The ADAPT Randomized Clinical Trial.

Importance: Many patients with chronic obstructive pulmonary disease (COPD), heart failure (HF), and interstitial lung disease (ILD) endure poor quality of life despite conventional therapy. Palliative care approaches may benefit this population prior to end of life. Objective: Determine the effect of a nurse and social worker palliative telecare team on quality of life in outpatients with COPD, HF, or ILD compared with usual care. Design, Setting, and Participants: Single-blind, 2-group, multisite randomized clinical trial with accrual between October 27, 2016, and April 2, 2020, in 2 Veterans Administration health care systems (Colorado and Washington), and including community-based outpatient clinics. Outpatients with COPD, HF, or ILD at high risk of hospitalization or death who reported poor quality of life participated. Intervention: The intervention involved 6 phone calls with a nurse to help with symptom management and 6 phone calls with a social worker to provide psychosocial care. The nurse and social worker met weekly with a study primary care and palliative care physician and as needed, a pulmonologist, and cardiologist. Usual care included an educational handout developed for the study that outlined self-care for COPD, ILD, or HF. Patients in both groups received care at the discretion of their clinicians, which could include care from nurses and social workers, and specialists in cardiology, pulmonology, palliative care, and mental health. Main Outcomes and Measures: The primary outcome was difference in change in quality of life from baseline to 6 months between the intervention and usual care groups (FACT-G score range, 0-100, with higher scores indicating better quality of life, clinically meaningful change ≥4 points). Secondary quality-of-life outcomes at 6 months included disease-specific health status (Clinical COPD Questionnaire; Kansas City Cardiomyopathy Questionnaire-12), depression (Patient Health Questionnaire-8) and anxiety (Generalized Anxiety Disorder-7) symptoms. Results: Among 306 randomized patients (mean [SD] age, 68.9 [7.7] years; 276 male [90.2%], 30 female [9.8%]; 245 White [80.1%]), 177 (57.8%) had COPD, 67 (21.9%) HF, 49 (16%) both COPD and HF, and 13 (4.2%) ILD. Baseline FACT-G scores were similar (intervention, 52.9; usual care, 52.7). FACT-G completion was 76% (intervention, 117 of 154; usual care, 116 of 152) at 6 months for both groups. Mean (SD) length of intervention was 115.1 (33.4) days and included a mean of 10.4 (3.3) intervention calls per patient. In the intervention group, 112 of 154 (73%) patients received the intervention as randomized. At 6 months, mean FACT-G score improved 6.0 points in the intervention group and 1.4 points in the usual care group (difference, 4.6 points [95% CI, 1.8-7.4]; P = .001; standardized mean difference, 0.41). The intervention also improved COPD health status (standardized mean difference, 0.44; P = .04), HF health status (standardized mean difference, 0.41; P = .01), depression (standardized mean difference, -0.50; P < .001), and anxiety (standardized mean difference, -0.51; P < .001) at 6 months. Conclusions and Relevance: For adults with COPD, HF, or ILD who were at high risk of death and had poor quality of life, a nurse and social worker palliative telecare team produced clinically meaningful improvements in quality of life at 6 months compared with usual care. Trial Registration: ClinicalTrials.gov Identifier: NCT02713347.

Preferred Role in Health Care Decision Making Over Time in Patients With Heart Failure: My Decision or My Doctor's Decision?

BACKGROUND: Understanding patients' preferred role in decision making can improve patient-centered care. This study aimed to determine change and the predictors of change in preferred decision-making roles over time in patients with heart failure. METHODS AND RESULTS: During the CASA (Collaborative Care to Alleviate Symptoms and Adjust to Illness) trial, patients' preferred roles in decision making were measured using the Control Preferences Scale (range 1-5; higher = less active; n = 312) at 4 timepoints over 1 year. The effect of the CASA intervention on preferred decision-making roles was tested using generalized linear mixed models. Whether preferences changed over time in the whole population was determined using linear regression. Demographic and health-related factors were examined as predictors of change using multiple linear regression. At baseline, most participants preferred active (score 1-2, 37.2%) or collaborative (score 3, 44.9%) roles. The CASA intervention did not influence preferred decision-making roles (P > 0.1). Preferences significantly changed over 1 year (P < 0.01), becoming more active (82.1%, 84.2%, 89.0%, 90.1% active/collaborative at each timepoint). Among all models and covariates, there were no significant predictors of change (P > 0.1). CONCLUSIONS: Patients' preferred roles in decision making change over time, but changes are not well predicted. Clinicians should frequently and directly communicate with patients about their preferred decision-making roles.

Reliability, Validity, and Responsiveness of the DEG, a Three-Item Dyspnea Measure.

BACKGROUND: Dyspnea is a common and debilitating symptom that affects many different patient populations. Dyspnea measures should assess multiple domains. OBJECTIVE: To evaluate the reliability, validity, and responsiveness of an ultra-brief, multi-dimensional dyspnea measure. DESIGN: We adapted the DEG from the PEG, a valid 3-item pain measure, to assess average dyspnea intensity (D), interference with enjoyment of life (E), and dyspnea burden with general activity (G). PARTICIPANTS: We used data from a multi-site randomized clinical trial among outpatients with heart failure. MAIN MEASURES: We evaluated reliability (Cronbach's alpha), concurrent validity with the Memorial-Symptom-Assessment-Scale (MSAS) shortness-of-breath distress-orbothersome item and 7-item Generalized-Anxiety-Disorder (GAD-7) scale, knowngroups validity with New-York-Heart-Association-Functional-Classification (NYHA) 1-2 or 3-4 and presence or absence of comorbid chronic obstructive pulmonary disease (COPD), responsiveness with the MSAS item as an anchor, and calculated a minimal clinically important difference (MCID) using distribution methods. KEY RESULTS: Among 312 participants, the DEG was reliable (Cronbach's alpha 0.92). The mean (standard deviation) DEG score was 5.26 (2.36) (range 0-10) points. DEG scores correlated strongly with the MSAS shortness of breath distress-or-bothersome item (r=0.66) and moderately with GAD-7 categories (ρ=0.36). DEG scores were statistically significantly lower among patients with NYHA 1-2 compared to 3-4 [mean difference (standard error): 1.22 (0.27) points, p<0.01], and those without compared to with comorbid COPD [0.87 (0.27) points, p<0.01]. The DEG was highly sensitive to change, with MCID of 0.59-1.34 points, or 11-25% change. CONCLUSIONS: The novel, ultra-brief DEG measure is reliable, valid, and highly responsive. Future studies should evaluate the DEG's sensitivity to interventions, use anchor-based methods to triangulate MCID estimates, and determine its prognostic usefulness among patients with chronic cardiopulmonary and other diseases.

How Does Spiritual Well-Being Change Over Time Among US Patients with Heart Failure and What Predicts Change?

Few studies have examined how spiritual well-being changes over time in patients with heart failure. We conducted a secondary analysis of data from the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) trial (N = 314). Spiritual well-being was measured using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being Scale (FACIT-Sp) at baseline and 12-month follow-up. Of the 165 patients with spiritual well-being data at follow-up, 65 (39%) experienced probable clinically meaningful changes (> 0.5 SD) in spiritual well-being (35 improved, 30 declined). Increased pain (p = 0.04), decreased dyspnea (p < 0.01), and increased life completion (p = 0.02) were associated with improvement in overall spiritual well-being. Exploratory analyses found different predictors for FACIT-Sp subscales.

Exploring expanded interdisciplinary roles in goals of care conversations in a national goals of care initiative: A qualitative approach.

BACKGROUND: The United States Veterans Health Administration National Center for Ethics in Health Care implemented the Life-Sustaining Treatment Decisions Initiative throughout the Veterans Health Administration health care system in 2017. This policy encourages goals of care conversations, referring to conversations about patient's treatment and end-of-life wishes for life-sustaining treatments, among Veterans with serious illnesses. A key component of the initiative is expanding interdisciplinary provider roles in having goals of care conversations. AIM: Use organizational role theory to explore medical center experiences with expanding interdisciplinary roles in the implementation of a goals of care initiative. DESIGN: A qualitative thematic analysis of semi-structured interviews. SETTING/PARTICIPANTS: Initial participants were recruited using purposive sampling of local medical center champions. Snowball sampling identified additional participants. Participants included thirty-one interdisciplinary providers from 12 geographically diverse initiative pilot and spread medical centers. RESULTS: Five themes were identified. Expanding provider roles in goals of care conversations (1) involves organizational culture change; (2) is influenced by medical center leadership; (3) is supported by provider role readiness; (4) benefits from cross-disciplinary role agreement; and (5) can "overwhelm" providers. CONCLUSIONS: Organizational role theory is a helpful framework for exploring interdisciplinary roles in a goals of care initiative. Support and recognition of provider role expansion in goals of care conversations was important for the adoption of a goals of care initiative. Actionable strategies, including multi-level leadership support and the use of interdisciplinary champions, facilitate role change and have potential to strengthen uptake of a goals of care initiative.

A longitudinal analysis of the relationships between depression, fatigue, and pain in patients with heart failure.

OBJECTIVES: Depression, pain, and fatigue are common and bothersome symptoms in heart failure, a serious illness in older adults. Understanding longitudinal pathways among depression, pain, and fatigue in heart failure could inform treatment and improve quality of life. METHODS: We completed secondary, longitudinal data analyses of a sample of older adults with heart failure (baseline N = 317). Bootstrapped mediation was used to examine two longitudinal models of pain and depression, with fatigue at 6-months as the mediator. The outcome variables were 12-month pain and depression. RESULTS: Depressive symptoms were associated with new onset of pain symptoms; however, this association was mediated by fatigue. Pain was not associated with new depression or fatigue symptoms in this sample. DISCUSSION: In patients with heart-failure, worsening pain symptoms appear to be directly related to levels of depression and fatigue. These findings demonstrate that depression and fatigue may be key to reducing pain symptoms in this population.

Changes in Social Support and Relational Mutuality as Moderators in the Association Between Heart Failure Patient Functioning and Caregiver Burden.

BACKGROUND: Caregivers to patients with heart failure (HF) may experience substantial burden in their roles, yet little is known about factors that exacerbate caregiver burden over time. OBJECTIVES: We test the moderating role of changes in caregivers' social support and patient-caregiver relationship mutuality in the association between HF patient functioning and caregiver burden. METHODS: Data were analyzed using Stata 13.1 for 100 HF primary caregivers, the majority of whom were female (81%), living with the patient (87%), and married or partnered to the patient (70%). Patients reported on dyspnea, disability level, and symptom severity, and caregivers reported on patient-caregiver mutuality, social support, and perceived caregiver burden at both baseline and a 12-month follow-up. RESULTS: Regression analyses using the Structural Equation Modeling framework revealed that declines in caregiver-patient mutuality over the 12 months of the study amplified the association between patient functioning (ie, dyspnea, symptom severity, and disability) and caregiver burden. Change in social support did not significantly moderate the association between any of the patient functioning variables and caregiver burden. CONCLUSIONS: Caregivers' relationships with their care recipient shape how they respond to and interpret the demands of caregiving, and relationships experiencing negative changes over time contribute to caregiver burden. Promoting and sustaining positive social relationships within the caregiver-patient dyad is thus a promising avenue for interventions aimed at reducing the burden experienced by caregivers to patients with HF.

Puente para cuidar (bridge to caring): A palliative care patient navigator and counseling intervention to improve distress in Latino/as with advanced cancer.

OBJECTIVE: Interventions are needed to improve mental health (ie, depression, anxiety) and palliative care (ie, symptoms, goals of care, and advance care planning) outcomes in Latino/as with advanced cancer. METHODS: An interprofessional study team used the ecological validity model and a participatory approach to adapt an evidence-based counseling intervention for Latino/as and integrate the counseling intervention with an evidence-based patient navigator intervention. Next, a small pilot study was conducted to understand and improve the feasibility of the integrated puente para cuidar intervention. RESULTS: Adaptations were made to language, literacy, and content of the counseling intervention, and video vignettes of the counseling case studies were produced on the recommendation of Latino/a stakeholders. Bicultural, bilingual patient navigators were used as "cultural brokers" between Latino/a patients and the counselor. The pilot study of puente para cuidar demonstrated feasibility based on participant perception of helpfulness and acceptability and nearing goal visit completion rates. CONCLUSIONS: A culturally adapted intervention to address mental health and palliative care needs in Latino/as with advanced cancer was developed from prior evidenced-based interventions using a cultural adaptation model and a participatory approach. The intervention is ready for effectiveness testing.

Perceptions of Patient Portal Use for Advance Directive Documentation among Older Adults with Multiple Chronic Conditions.

Patient portals can play an innovative role in facilitating advanced care planning (ACP) and documenting advance directives (ADs) among older adults with multiple chronic conditions. The objective of this qualitative sub-study was to (1) understand older adults' use of an ACP patient portal section and (2) obtain user-design input on AD documentation features. Although some older adults may be reluctant, participants reported likely to use a portal for ADs with proper portal design and support.

Using the Technology Acceptance Model to Explore User Experience, Intent to Use, and Use Behavior of a Patient Portal Among Older Adults With Multiple Chronic Conditions: Descriptive Qualitative Study.

BACKGROUND: Patient portals offer modern digital tools for older adults with multiple chronic conditions (MCC) to engage in their health management. However, there are barriers to portal adoption among older adults. Understanding portal user interface and user experience (UI and UX) preferences of older adults with MCC may improve the accessibility, acceptability, and adoption of patient portals. OBJECTIVE: The aim of this study was to use the Technology Acceptance Model (TAM) as a framework for qualitatively describing the UI and UX, intent to use, and use behaviors among older patients with MCC. METHODS: We carried out a qualitative descriptive study of Kaiser Permanente Colorado's established patient portal, My Health Manager. Older patients (N=24; mean 78.41 (SD 5.4) years) with MCC participated in focus groups. Stratified random sampling was used to maximize age and experience with the portal among participants. The semistructured focus groups used a combination of discussion and think-aloud strategies. A total of 2 coders led the theoretically driven analysis based on the TAM to determine themes related to use behavior, portal usefulness and ease of use, and intent to use. RESULTS: Portal users commonly used email, pharmacy, and lab results sections of the portal. Although, generally, the portal was seen to be easy to use, simple, and quick, challenges related to log-ins, UI design (color and font), and specific features were identified. Such challenges inhibited participants' intent to use the portal entirely or specific features. Participants indicated that the portal improved patient-provider communication, saved time and money, and provided relevant health information. Participants intended to use features that were beneficial to their health management and easy to use. CONCLUSIONS: Older adults are interested in using patient portals and are already taking advantage of the features available to them. We have the opportunity to better engage older adults in portal use but need to pay close attention to key considerations promoting usefulness and ease of use.

"Why Would I Choose Death?": A Qualitative Study of Patient Understanding of the Role and Limitations of Cardiac Devices.

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.

Identifying critical psychotherapy targets in serious cardiac conditions: The importance of addressing coping with symptoms, healthcare navigation, and social support.

OBJECTIVE: In seriously ill cardiac patients, several psychotherapy efficacy studies demonstrate little to no reduction in depression or improvement in quality of life, and little is known about how to improve psychotherapies to best address the range of patient needs. An interpersonal and behavioral activation psychotherapy was a key component of the Collaborative Care to Alleviate Symptoms and Adjust to Illness (CASA) multisite randomized clinical trial. Although depressive symptoms did improve in the CASA trial, questions remain about how best to tailor psychotherapies to the needs of seriously ill patient populations. The study objective was to describe psychosocial needs emerging during a clinical trial of a palliative care and interpersonal and behavioral activation psychotherapy intervention that were not specifically addressed by the psychotherapy. METHOD: During the CASA trial, patient needs were prospectively tracked by the psychotherapist in each visit note using an a priori code list. Preplanned analysis of study data using directed content analysis was conducted analyzing the a priori code list, which were collapsed by team consensus into larger themes. The frequency of each code and theme were calculated into a percentage of visits. RESULT: A total of 150 patients received one or more visits from the therapist and were included in the analysis. Participants screened positive for depressive disorder (47%), had poor heart failure-specific health status (mean Kansas City Cardiomyopathy Questionnaire score = 48.6; SD = 17.4), and multiple comorbidities (median 4.3). Common needs that emerged during the therapy included difficulty coping with fatigue (48%), pain (28%), and satisfaction issues with medical care (43%). The following broader themes emerged: social support (77% of sessions), unmet symptom needs (67%), healthcare navigation (48%), housing, legal, safety, and transportation (32%), and end of life (12%). SIGNIFICANCE OF RESULTS: Coping with chronic symptoms and case management needs commonly emerged during psychotherapy visits. Future psychotherapy interventions in seriously ill populations should consider the importance of coping with chronic symptoms and case management.

Denver Spirited Heart: Mixed-Methods Pilot Study of a Psychospiritual Intervention for Heart Failure Patients.

BACKGROUND: Increased spiritual well-being is related to quality of life (QOL) in patients with heart failure (HF). However, consistent and deliberate integration of spirituality into HF patient care has received limited attention. OBJECTIVE: The aim of this study was to evaluate the feasibility, acceptability, and preliminary evidence regarding the efficacy of a resource-sparing psychospiritual intervention to improve QOL in HF patients. METHODS: A 12-week mail-based intervention addressing spirituality, stress, coping, and adjusting to illness was developed and tested using a mixed-methods, 1-group pretest-posttest pilot study design. A convenience sample of patients with HF completed prestudy and poststudy questionnaires, including the Kansas City Cardiomyopathy Questionnaire, Patient Health Questionnaire, Meaning in Life Questionnaire, and Functional Assessment of Chronic Illness Therapy-Spiritual. Research staff conducted semistructured interviews with program completers. Interviews were coded and analyzed using conventional content analysis. RESULTS: Participants (N = 33; 82% male; mean age, 61 years) completed 87% of baseline data collection, an average of 9 intervention modules, and 55% of poststudy questionnaires. Participants rated all the modules as at least moderately helpful, and qualitative themes suggested that patients found the intervention acceptable and beneficial. Most participants believed spirituality should continue to be included, although they disagreed on the extent to which religion should remain. Participants who completed the intervention reported evidence suggesting increased QOL (Kansas City Cardiomyopathy Questionnaire; effect size [ES], 0.53), decreased depressive symptoms (Patient Health Questionnaire-9; ES, 0.62), and less searching for meaning (Meaning in Life Questionnaire; ES, 0.52). CONCLUSIONS: Results indicate that a module-based program integrating spirituality and psychosocial coping strategies was feasible and acceptable and may improve QOL. This preliminary study suggests that clinicians be open to issues of spirituality as they may relate to QOL in patients with HF. Future research will test a revised intervention.

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

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.

The future as a series of transitions: qualitative study of heart failure patients and their informal caregivers.

BACKGROUND: Advance care planning often only focuses on written advance directives rather than on future goals important to patients and families. Heart failure has a particularly uncertain future with variable clinical trajectories. A better understanding of patient and family concerns about and perceptions of the future could improve advance care planning. OBJECTIVE: We aimed to identify how patients with heart failure and their informal (family) caregivers perceive their future. DESIGN: This was a cross-sectional study using qualitative methods. PARTICIPANTS: Thirty-three patients from an academic health care system with New York Heart Association class II-IV heart failure and 20 of their informal caregivers participated in the study. We used a purposive sampling strategy to include patients within a range of ages and health statuses. APPROACH: Participants were asked in individual, semi-structured interviews: "When you think about what lies ahead, what comes to mind?" Qualitative analysis used an inductive approach. Early in the analysis, it became clear that participants' narratives about the future were described in terms of past transitions. This led us to use transition theory to further guide analysis. Transition theory describes how people restructure their reality and resolve uncertainty during change. KEY RESULTS: Patients and their caregivers talked about past and present transitions when asked about the future: "The present gets in the way of talking about the future." We identified four common pivotal transitions, including the shock of first being diagnosed with heart failure; learning to adjust to life with heart failure; reframing and taking back control of one's life; and understanding and accepting that death is inevitable. Concerns about the future were framed based on the most recent transition. CONCLUSIONS: Heart failure is a series of transitions according to patients and caregivers. By recognizing and educating patients about transitions, identifying transition-specific concerns, and supporting patients and caregivers through transitions, the process of planning for the future as part of advance care planning may be improved.