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-quality EOL care and the barriers encountered. Interviews were analyzed using software-assisted line-by-line coding in order to identify emergent themes. Although some elements and barriers of high-quality EOL care for AHF were similar to those described for other diseases, we identified several unique features. We found a competing desire to avoid overly aggressive care at EOL alongside a need to ensure that life-prolonging interventions were exhausted. We also identified several barriers related to identifying EOL including greater prognostic uncertainty, inadequate recognition of AHF as a terminal disease and dependence of symptom control on disease-modifying therapies.
Conclusions: Our findings support quality metrics that prioritize receipt of goal-concordant care over utilization measures as well as a need for more inclusive payment models that appropriately reflect the dual nature of many AHF therapies.
Importance: National guidelines recommend early palliative care for patients with advanced heart failure, which disproportionately affects rural and minority populations.
Objective: To determine the effect of an early palliative care telehealth intervention over 16 weeks on the quality of life, mood, global health, pain, and resource use of patients with advanced heart failure.
Design, Setting, and Participants: A single-blind, intervention vs usual care randomized clinical trial was conducted from October 1, 2015, to May 31, 2019, among 415 patients 50 years or older with New York Heart Association class III or IV heart failure or American College of Cardiology stage C or D heart failure at a large Southeastern US academic tertiary medical center and a Veterans Affairs medical center serving high proportions of rural dwellers and African American individuals.
Interventions: The ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers) intervention comprises an in-person palliative care consultation and 6 weekly nurse-coach telephonic sessions (20-40 minutes) and monthly follow-up for 48 weeks.
Main Outcomes and Measures: Primary outcomes were quality of life (as measured by the Kansas City Cardiomyopathy Questionnaire [KCCQ]: score range, 0-100; higher scores indicate better perceived health status and clinical summary scores =50 are considered “fairly good” quality of life; and the Functional Assessment of Chronic Illness Therapy–Palliative-14 [FACIT-Pal-14]: score range, 0-56; higher scores indicate better quality of life) and mood (as measured by the Hospital Anxiety and Depression Scale [HADS]) over 16 weeks. Secondary outcomes were global health (Patient Reported Outcome Measurement System Global Health), pain (Patient Reported Outcome Measurement System Pain Intensity and Interference), and resource use (hospital days and emergency department visits).
Results: Of 415 participants (221 men; baseline mean [SD] age, 63.8 [8.5] years) randomized to ENABLE CHF-PC (n = 208) or usual care (n = 207), 226 (54.5%) were African American, 108 (26.0%) lived in a rural area, and 190 (45.8%) had a high-school education or less, and a mean (SD) baseline KCCQ score of 52.6 (21.0). At week 16, the mean (SE) KCCQ score improved 3.9 (1.3) points in the intervention group vs 2.3 (1.2) in the usual care group (difference, 1.6; SE, 1.7; d = 0.07 [95% CI, -0.09 to 0.24]) and the mean (SE) FACIT-Pal-14 score improved 1.4 (0.6) points in the intervention group vs 0.2 (0.5) points in the usual care group (difference, 1.2; SE, 0.8; d = 0.12 [95% CI, -0.03 to 0.28]). There were no relevant between-group differences in mood (HADS-anxiety, d = -0.02 [95% CI, –0.20 to 0.16]; HADS-depression, d = –0.09 [95% CI, –0.24 to 0.06]).
Conclusions and Relevance: This randomized clinical trial with a majority African American sample and baseline good quality of life did not demonstrate improved quality of life or mood with a 16-week early palliative care telehealth intervention. However, pain intensity and interference (secondary outcomes) demonstrated a clinically important improvement.
Outcomes in pediatric patients with ventricular assist devices (VADs) for advanced heart failure (HF) are improving, but the risk of associated morbidity and mortality remains substantial. Few data exist on the involvement of pediatric palliative care (PPC) in this high-risk patient population. We aimed to characterize the extent of palliative care involvement in the care of patients requiring VAD placement at our institution. Single-center retrospective chart review analyzing all VAD patients at a large pediatric center over a 4 year period. Timing and extent of palliative care subspecialty involvement were analyzed. Between January 2014 and December 2017, 55 HF patients underwent VAD implantation at our institution. Pediatric palliative care utilization steadily increased over consecutive years (2014: <10% of patients, 2015: 20% of patients, 2016: 50% of patients, and 2017: 65% of patients) and occurred in 42% (n = 23) of all patients. Of these, 57% (n = 13) occurred before VAD placement while 43% (n = 10) occurred after implantation. Patients who died during their VAD implant hospitalization (24%, n = 13) were nearly twice as likely to have PPC involvement (62%) as those who reached transplant (38%). Of those who died, patients who had PPC involved in their care were more likely to limit resuscitation efforts before their death. Four patients had advanced directives in place before VAD implant, of which three had PPC consultation before device placement. Three families (5%) refused PPC involvement when offered. Pediatric palliative care utilization is increasing in VAD patients at our institution. Early PPC involvement occurred in the majority of patients and appears to lead to more frequent discussion of goals-of-care and advanced directives.
Patients with heart failure have comparable illness burden and palliative care needs to those with cancer. However, few of them are offered timely palliative care. One main barrier is the difficulty in identifying those who require palliative care. Several palliative care needs-assessment/measurement tools were used to help identify these patients and assess/measure their needs, but it is not known which one is the most appropriate for this population. This review aimed to identify the most appropriate palliative care needs-assessment/measurement tools for patients with heart failure. Cochrane Library, MEDLINE Complete, AMED, PsycINFO, CINAHL Complete, EMBASE, EThOS, websites of the identified tools, and references and citations of the included studies were searched from inception to 25 June 2020. Studies were included if they evaluated palliative care needs-assessment/measurement tools for heart failure populations in terms of development, psychometrics, or palliative care patient/needs identification. Twenty-seven papers were included regarding nineteen studies, most of which were quantitative and observational. Six tools were identified and compared according to their content and context of use, development, psychometrics, and clinical applications in identifying patients with palliative care needs. Despite limited evidence, the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) is the most appropriate palliative care needs-assessment tool for use in heart failure populations. It covers most of the patient needs and has the best psychometric properties and evidence of identification ability and appropriateness. Psychometric testing of the tools in patients with heart failure and evaluating the tools to identify those with palliative care needs require more investigation.
BACKGROUND: A previous study found that care provided by a nurse practitioner (NP) during oncological or palliative care was highly regarded. These patients, however, were considered a special population due to suffering from life-threatening illnesses. It remains unclear whether the results are transferable to patients with chronic conditions. Patient's perceptions of the quality of NP care have reflected that it equals or exceeds that of physicians, but the root causes of these remarks remain unclear.
PURPOSE: To describe the difference in perception of NP care by patients suffering from chronic heart failure (CHF) or inflammatory bowel disease (IBD) in contrast with NP oncological or palliative care.
METHODOLOGICAL ORIENTATION: A qualitative study from a phenomenological perspective was conducted. Data were analyzed using Colaizzi's seven-step method and the Metaphor Identification Procedure.
SAMPLE: In 2018 and 2019, 16 outpatients receiving CHF or IBD care were interviewed.
CONCLUSIONS: Although chronic and life-threatening diseases may differentiate patients' perspectives, it can be generally stated that patients value NPs to be reliable, helpful, and empathic. Patients feel empowered, at peace and in control thanks to integrated care by dedicated experts.
IMPLICATIONS FOR PRACTICE: Outpatients highly appreciate the "communicator role" and "skilled companionship" performed by NPs, to fulfill their needs for attention to the "complete picture." Therefore, further consideration of these competencies is recommended.
BACKGROUND: Patients receiving left ventricular assisted device (LVAD) require the expertise of specialty trained nurses referred to as VAD coordinators. The long-term use of these devices has created morally distressing situations for VAD coordinators.
OBJECTIVE: This pilot study sought to explore the association between ventricular assistance device (VAD) coordinators' unique roles and responsibilities and moral distress.
METHODS: An online survey was distributed to VAD coordinators through a listserv. The non-probability sample consisted of 36 nurses across the United States.
RESULTS: Bivariate analyses identified a number of areas of difference in respondent's levels of moral distress based on specific responsibilities associated with their role as a VAD coordinator.
CONCLUSION: These findings indicate team communication, competence, and location of VAD discontinuation may be important factors related to VAD coordinators' distress. Future research is needed with larger sample sizes and continued exploration of the impact of specialized training and curricula content.
BACKGROUND: Heart failure is highly prevalent with poor outcomes, yet only a small proportion of patients receive specialist palliative care services.
AIM: To explore if a programme focusing on support and symptom management of people with heart failure in a hospice environment would be acceptable and of benefit to patients.
METHODS: A pre/post intervention study design using mixed methods was used to evaluate the programme. The programme was delivered in 2-hour time slots over a period of 8 weeks. Participants completed three questionnaires pre- and post- and were interviewed within 1 week of completion. The study was conducted between June 2014 and January 2015.
FINDINGS: A response rate of 51.7% (n=15) was narrowed to a final sample size of 12 patients. The questionnaire results showed a positive impact on participants' wellbeing and views regarding the use of a hospice, but a desire for greater focus on emotional support. Four key themes emerged from inductive qualitative analysis: demystifying perceptions about hospice care; positivity about wellbeing; learning together; and consideration of end-of-life preparation.
CONCLUSION: This adapted programme provides a useful model for the increased integration of palliative care into provision for those living with advancing heart failure.
Background: Implantable cardioverter-defibrillators (ICDs) reduce the incidence of sudden cardiac death for high-risk patients with heart failure (HF), but shocks from these devices can also cause pain and anxiety at the end of life. Although professional society recommendations encourage proactive discussions about ICD deactivation, clinicians lack training in conducting these conversations, and they occur infrequently.
Methods: As part of a six-center randomized controlled trial, we evaluated the educational component of a multicomponent intervention shown to increase conversations about ICD deactivation by clinicians who care for a subset of patients with advanced HF. This consisted of a 90-minute training workshop designed to improve the quality and frequency of conversations about ICD management. To characterize its utility as an isolated intervention, we compared HF clinicians' pre- and postworkshop scores (on a 5-point Likert scale) assessing self-reported confidence and skills in specific practices of advance care planning, ICD deactivation discussions, and empathic communication.
Results: Forty intervention-group HF clinicians completed both pre- and postworkshop surveys. Preworkshop scores showed high baseline levels of confidence (4.36, standard deviation [SD = 0.70) and skill (4.08, SD = 0.72), whereas comparisons of pre- and postworkshop scores showed nonsignificant decreases in confidence (-1.16, p = 0.252) and skill (-0.20, p = 0.843) after the training session.
Conclusions: Our findings showed no significant changes in self-assessment ratings immediately after the educational intervention. However, our data did demonstrate that HF clinicians had high baseline self-perceptions of their skills in advance care planning conversations and appear to be well-primed for further professional development to improve communication in the setting of advanced HF.
Objectives: Hospice use reduces costly aggressive end-of-life (EOL) care (eg, repeated hospitalizations, intensive care unit care, and emergency department visits). Nevertheless, associations between hospice stays and EOL expenditures in prior research have been inconsistent. We examined the differential associations between hospice stay duration and EOL expenditures among newly diagnosed patients with cancer, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), and dementia.
Methods: In the Surveillance, Epidemiology, and End Results–Medicare data, we identified 240 246 decedents diagnosed with the aforementioned conditions during 2001 to 2013. We used zero-inflated negative binomial regression models to examine the differential associations between hospice length of services and EOL expenditures incurred during the last 90, 180, and 360 days of life.
Results: For the last 360 days of expenditures, hospice stays beyond 30 days were positively associated with expenditures for decedents with COPD, CHF, and dementia but were negatively associated for cancer decedents (all P<.001) after adjusting for demographic and medical covariates. In contrast, for the last 90 days of expenditures, hospice stay duration and expenditures were consistently negatively associated for each of the 4 patient disease groups.
Conclusions: Longer hospice stays were associated with lower 360-day expenditures for cancer patients but higher expenditures for other patients. We recommend that Medicare hospice payment reforms take distinct disease trajectories into account. The relationship between expenditures and hospice stay length also depended on the measurement duration, such that measuring expenditures for the last 6 months of life or less overstates the cost-saving benefit of lengthy hospice stays.
Background: Early integration of palliative care (PC) for patients with heart failure (HF) improves patient outcomes and decreases health care utilization. PC provided outside of an acute hospitalization is not well understood.
Objective: To synthesize the literature of outpatient PC in HF to identify the current landscape, the impact on patient health outcomes, key stakeholders' perspectives, and future implications for research and practice.
Design: A systematic search of PubMed, Embase, CINAHL, Cochrane, and Web of Science was conducted from inception to February 2019 for studies of outpatient PC in adults with HF. Each study was analyzed to describe study characteristics, location of PC, types of providers involved, participant characteristics, and main findings, and to characterize domains of PC addressed.
Results: Most studies (N = 19) employed a quantitative design and were conducted in the United States. The most common locations of PC were the home or PC clinic and providers were mainly PC specialists. Outpatient PC improved quality of life, alleviated symptoms, and decreased rehospitalizations for patients with HF. No study addressed all eight domains of PC. The structural, physical, and psychological domains were commonly addressed, whereas, least commonly addressed domains were the cultural and ethical/legal domain. Women and ethnic minorities were underrepresented in the majority of samples.
Conclusions: This integrative review highlights the need to promote primary PC and future PC research focusing on a holistic, integrated, team-based approach addressing all domains of PC in representative samples.
Background: Palliative care supports quality of life, symptom control, and goal setting in heart failure (HF) patients. Unlike hospice, palliative care does not restrict life-prolonging therapy. This study examined the association between palliative care during hospitalization for HF on the subsequent transitions and procedures.
Methods and Results: Veterans admitted to hospitals with HF from 2010 to 2015 were randomly selected for the Veterans Administration External Peer Review Program. Variables pertaining to demographic, clinical, laboratory, and usage were captured from Veterans Administration electronic records. Patients receiving hospice services before admission were excluded. Patients who received palliative care were propensity matched to those who did not. The primary outcomes were whether the patient experienced transitions or procedures in the 6 months after admission. Transitions included multiple readmissions (=2) or intensive care admissions and procedures included mechanical ventilation, pacemaker implantation, or defibrillator implantation. Among 57 182 hospitalized HF patients, 1431 received palliative care, and were well matched to 1431 without (standardized mean differences = ±0.05 on all matched variables). Palliative care was associated with significantly fewer multiple rehospitalizations (30.9% versus 40.3%, P<0.001), mechanical ventilation (2.8% versus 5.4%, P=0.004), and defibrillator implantation (2.1% versus 3.6%, P=0.01). After adjustment for facility fixed effects, palliative care consultation was associated with a significantly reduced hazard of multiple readmissions (adjusted hazard ratio=0.73, 95% CI, 0.64–0.84) and mechanical ventilation (adjusted hazard ratio=0.76, 95% CI, 0.67–0.87).
Conclusions: palliative care during HF admissions was associated with fewer readmissions and less mechanical ventilation. When available, engagement of HF patients and caregivers in palliative care for symptom control, quality of life, and goals of care discussions may be associated with reduced rehospitalizations and mechanical ventilation.
Heart failure is the leading cause of morbidity and mortality worldwide. Standard treatment for heart failure includes pharmacotherapy and cardiac device implants. However, supportive approaches in managing dyspnea in heart failure are limited. This study aimed to test the efficacy of 20-minute mindful breathing in reducing dyspnea among patients admitted for acute decompensated heart failure. We conducted a parallel-group, non-blinded, randomized controlled trial of a single session of 20-minute mindful breathing plus standard care versus standard care alone among patients admitted for moderate to severe dyspnea due to acute decompensated heart failure, using the dyspnea score based on the Edmonton Symptom Assessment System (ESAS), at the Cardiology Unit of University Malaya Medical Centre in Malaysia. Thirty participants were randomly assigned to a single session of 20-minute mindful breathing plus standard care (n = 15) or standard care alone (n = 15), with no difference in their demographic and clinical characteristics. There was statistically significant reduction in dyspnea in the intervention group compared to the control group at minute 20 (U = 49.5, n1 = 15, n2 =15, median reduction in ESAS dyspnea score 1 = 2, median reduction in ESAS dyspnea score 2 = 0, mean rank 1 = 11.30, mean rank 2 = 19.70, z = -2.692, r = 0.4, P = 0.007). Our results provided evidence that a single session of 20-minute mindful breathing was efficacious in reducing dyspnea for patients admitted for acute decompensated heart failure.
Background: The importance of advance care planning (ACP) has been recognized in the palliative are of patients with heart failure. It is necessary for dissemination of ACP to characterize the perceptions
of physicians and nurses towards ACP and to promote mutual understanding. The aim of this study is to investigate the perceptions of physicians and nurses concerning ACP for patients with heart failure.
Methods: We conducted a self-administered questionnaire survey with physicians and nurses who belonged to the 427 certified institutions for implantable cardioverter defibrillator (ICD) and/or cardiac
resynchronization therapy (CRT) in Japan. The self-administered questionnaire was originally designed based on the guidelines on palliative care or ACP and previous studies on the barriers of ACP. We asked the participants the recognition about condition/timing to implement ACP, Content of care to be implemented in ACP, and barriers against implementing ACP. A Mann-Whitney U test was performed and r value was calculated an effect size (ES) in order to evaluate the characteristic perceptions among physicians and nurses.
Results: Valid responses were obtained from 163 physicians (38.2%) and 208 nurses (48.7%). Regarding the condition/timing, nurses tended to recognize that ACP should be implemented from earlier clinical
stages than physicians. Regarding the contents of ACP, both physicians and nurses placed emphasis in assessing the patient’s perception of disease progression. The biggest difference was found in the item
“Ask patient about what has been important in life so far”; 78.6% of physicians but 94.2% of nurses chose “it must/should be implemented” (Cohen’s r=0.31). Regarding the barriers, both physicians and nurses
recognized the difficulty in prognosis prediction. The biggest differences were found in the items “Medical staff does not know how to implement ACP for patients and their families” (45.6% of physicians and 70.4% of nurses chose “strongly agree/agree”, r=0.27), and “There is disagreement regarding care goals among team members of different professions” (18.5% in physicians and 43.3% in nurses, r=0.27).
Conclusions: It is suggested that discussions and further studies are necessary concerning the condition/timing of implementing ACP from early stages, specific manuals/protocols and recommendation on rolesharing within a multidisciplinary team.
Despite significant advances in heart failure (HF) treatment, HF remains a progressive, extremely symptomatic, and terminal disease with a median survival of 2.1 years after diagnosis. HF often leads to a constellation of symptoms, including dyspnea, fatigue, depression, anxiety, insomnia, pain, and worsened cognitive function. Palliative care is an approach that improves the quality of life of patients and their caregivers facing the problems associated with life-threatening illness and therefore is well suited to support these patients. However, historically, palliative care has often focused on supporting patients with malignant disease, rather than a progressive chronic disease such as HF. Predicting mortality in patients with HF is challenging. The lack of obvious transition points in disease progression also raises challenges to primary care providers and specialists to know at what point to integrate palliative care during a patient's disease trajectory.
Although therapies for HF often result in functional and symptomatic improvements including health-related quality of life (HRQL), some patients with HF do not demonstrate these benefits, including those patients with a preserved ejection fraction. Provision of palliative care for patients with HF requires an understanding of HF pathogenesis and common medications used for these patients, as well as an approach to balancing life-prolonging and HRQL care strategies. This review describes HF and current targeted therapies and their effects on symptoms, hospital admission rates, exercise performance, HRQL, and survival. Pharmacological interactions with and precautions related to commonly used palliative care medications are reviewed. The goal of this review is to equip palliative care clinicians with information to make evidence-based decisions while managing the balance between optimal disease management and patient quality of life.
BACKGROUND: Use of hospice has grown among patients with heart failure; however, gaps remain in the ability of agencies to tailor services to meet their needs.
AIM: This study describes the implementation of a cardiac home hospice program and insights for dissemination to other hospice programs.
DESIGN: We conducted a multimethod analysis structured around the Reach Effectiveness Adoption Implementation and Maintenance (RE-AIM) framework.
SETTINGS/PARTICIPANTS: We used electronic medical records for our quantitative data source and interviews with hospice clinicians from a not-for-profit hospice agency (N = 32) for our qualitative data source.
RESULTS: Reach-A total of 1273 participants were enrolled in the cardiac home hospice program, of which 57% were female and 42% were black or Hispanic with a mean age was 86 years. Effectiveness-The cardiac home hospice program increased hospice enrollment among patients with heart failure from 7.9% to 9.5% over 1 year (2016-2017). Adoption-Institutional factors that supported the program included the acute need to support medically complex patients at the end of life and an engaged clinical champion. Implementation-Program implementation was supported by interdisciplinary teams who engaged in care coordination. Maintenance-The program has been maintained for over 3 years.
CONCLUSION: The cardiac home hospice program strengthened hospice clinicians' ability to confidently provide care for patients with heart failure, expanded awareness of their symptoms among clinicians, and was associated with increased enrollment of patients with heart failure over the study period. This RE-AIM evaluation provides lessons learned and strategies for future adoption, implementation, and maintenance of a cardiac home hospice program.
Heart failure (HF), a clinical syndrome with variable trajectory has become more common. As people with HF experience functional decline during periods of deterioration in their HF status, or with aging, their needs for palliative care increase. This review considers the palliative aspects of evidence-based HF care, which benefit patients while also addressing the underlying etiology of the HF. We also identify symptoms common to patients with HF and management beyond evidence-based HF care. Prognostic models and tools to identify patients appropriately evaluated by HF specialty experts might help clinicians understand the patient's status. Rather than trying to identify a point at which palliative care should be included in care for a patient with HF, we suggest that identifying specific needs of the patient and family is a better way to target palliative care interventions. We review available publications that have explored integration of palliative care into HF care, and propose an outpatient clinic model that assesses needs and symptoms and directs HF specialist or palliative care based on this assessment.
BACKGROUND: Palliative care can improve outcomes for patients with advanced chronic heart failure and their families, but timely recognition of palliative care needs remains challenging.
AIM: The aim of this study was to identify characteristics of a tool to assess palliative care needs in chronic heart failure that are needed for successful implementation, according to patients, their family and healthcare professionals in The Netherlands.
METHODS: Explorative qualitative study, part of the project 'Identification of patients with HeARt failure with PC needs' (I-HARP), focus groups and individual interviews were held with healthcare professionals, patients with chronic heart failure, and family members. Data were analysed using the Consolidated Framework for Implementation Research.
RESULTS: A total of 13 patients, 10 family members and 26 healthcare professionals participated. Direct-content analysis revealed desired tool characteristics for successful implementation in four constructs: relative advantage, adaptability, complexity, and design quality and packaging. Healthcare professionals indicated that a tool should increase awareness, understanding and knowledge concerning palliative care needs. A tool needs to: be adaptable to different disease stages, facilitate early identification of palliative care needs and ease open conversations about palliative care. The complexity of chronic heart failure should be considered in a personalized approach.
CONCLUSIONS: The current study revealed the characteristics of a tool for timely identification of palliative care needs in chronic heart failure needed for successful implementation. The next steps will be to define the content of the tool, followed by development of a preliminary version and iterative testing of this version by the different stakeholders.
AIM: The aim of this study was to evaluate the suitability and comprehensibility of the integrated palliative care outcome scale for the evaluation of palliative care needs in patients with heart failure.
METHODS AND RESULTS: This cross-sectional study investigated 100 heart failure patients (40 women, 60 men; median age 79 years) within the first few days of their hospitalisation by applying the integrated palliative care outcome scale (3-day recall period) and two additional self-developed questions about the suitability and comprehensibility of the integrated palliative care outcome scale. Clinically relevant somatic and psycho-emotional symptoms were reported very frequently (approximately 75% each), followed by communicational needs or practical issues. Ninety-five per cent of patients thought the integrated palliative care outcome scale very easy to understand, and 91% judged the integrated palliative care outcome scale suitable to assess palliative care needs.
CONCLUSION: The integrated palliative care outcome scale was well accepted by hospitalised patients with heart failure and identified a high burden of both physical and psycho-emotional symptoms. Screening for palliative care has to consider patients and their relatives alike, and should be part of a comprehensive care concept jointly integrated into clinical routine by primary and specialised palliative care teams.
BACKGROUND: Despite a majority of persons receiving hospice care in their homes, there are gaps in understanding how to facilitate goals of care conversations between persons with heart failure and healthcare providers.
AIM: To identify barriers and facilitators which shape goals of care conversations for persons with heart failure in the context of home hospice.
DESIGN: A qualitative descriptive study design was used with semi-structured interviews.
SETTING/PARTICIPANTS: We conducted qualitative interviews with persons with heart failure, family caregivers, and interprofessional healthcare team members at a large not-for-profit hospice agency in New York City between March 2018 and February 2019.
RESULTS: A total of 39 qualitative interviews were conducted, including with healthcare team members (e.g. nurses, physicians, social workers, spiritual counselors), persons with heart failure, and family caregivers. Three themes emerged from the qualitative interviews regarding facilitators and barriers in goals of care conversations for better decision-making: (1) trust is key to building and maintaining goals of care conversations; (2) lack of understanding and acceptance of hospice inhibits goals of care conversations; and (3) family support and engagement promote goals of care conversations.
CONCLUSION: Findings from this study suggest that interventions designed to improve goals of care conversations in the home hospice setting should focus on promoting understanding and acceptance of hospice, family support and engagement, and building trusting relationships with interprofessional healthcare teams.
Background: Most patients with advanced heart failure are ill-prepared and poorly supported during the end of life. To date, research has focused primarily on generalized patient accounts of the management or self-care phase of the syndrome. Little research has examined the end of life in depth or from the perspectives of family members.
Aims: The purpose of this study is to describe how people diagnosed with heart failure and their family members describe uncertainty related to impending death.
Methods and results: A narrative inquiry was undertaken using a social constructionist perspective. Twenty participants took part in over 60 interviews: 12 participants with heart failure (eight male and four female; mean = 67.3 years) and eight family members (mean = 61.6 years) engaged in two in-depth interviews, approximately 3–4 months apart, followed by a telephone follow-up 2–3 months later. Six key themes/storylines were identified. These included: prognosis messages received from physicians; whenever I die, I die; loss isn’t new to me but … ; carrying on amidst the fragility of life; ultimately living not knowing; and the need to prepare.
Conclusion: the six key storylines of death and dying with advanced heart failure were consistent for both patients and family members. There was a desire for better communication with physicians. Many participants were critical of how the prognosis of advanced heart failure was communicated to them, even if they anticipated the news. Participants wanted frank, open conversations with their healthcare providers that both acknowledged that they were at end of life but did not remove all hope.