Introduction: Healthcare professionals (HCPs) experience difficulties in timely recognising and directing palliative care (PC) needs of their patients with chronic heart failure (CHF). The aim of this study was to develop a comprehensive tool to enable HCPs in timely recognising and directing PC needs in CHF.
Methods: A four-stage mixed-method study was performed. Stage 1: identification of needs and questions of patients and families; stage 2: prioritisation and refinement of the needs and questions; stage 3a: testing and online feedback on V.1; stage 3b: selecting and refining care recommendations; stage 4: testing and review of V.2. Iterative reviews followed each step in the development process to ensure a wide range of stakeholder input. In total, 16 patients, 12 family members and 54 HCPs participated.
Results: A comprehensive set of 13 PC needs was identified, redefined and tested. The resulting tool, called Identification of patients with HeARt failure with PC needs (I-HARP), contains an introduction prompt with open questions to start the conversation, 13 closed screening questions with additional in-depth questions, and recommendations on actions for identified needs.
Conclusion: I-HARP contains an evidence-based set of questions and palliative CHF care suggestions for HCPs in the Netherlands. The resulting tool, approved by HCPs, patients and family members, is a promising guidance for HCP to timely recognise and direct PC needs in CHF.
INTRODUCTION AND AIM: Palliative care in patients with advanced heart failure is strongly recommended by Clinical Practice Guidelines. We aimed to calculate the prevalence of advanced heart failure in admitted patients, to describe their management, and to analyse the factors that influence their referral to specialised palliative care.
PATIENTS AND METHODS: Cross-sectional, multicentre study that consecutively included patients admitted for heart failure in 74 Spanish hospitals. If they met criteria for advanced heart failure, their treatment, complications and procedures were recorded.
RESULTS: A total of 3153 patients were included. Of them, 739 (23%) met criteria for advanced heart failure. They were more likely to be women, older and to have a history of anaemia, chronic kidney disease and cognitive impairment. For their management, furosemide infusions (30%) and vasodilators (21%) were used. Refractory symptoms were treated with opioids (47%) and benzodiazepines (44%). Palliative care was only provided in the last hours of life in 48% of them. A multidisciplinary approach, involving palliative care specialists was sought in 15% of these patients. Treatment with furosemide infusions, an advanced New York Heart Association functional class, to meet advanced HF criteria and the presence of cancer were associated with the referral to specialised palliative care.
CONCLUSIONS: Almost one in four patients admitted with HF met criteria of advanced disease. They were older and had more comorbidities. Specialist palliative care services were involved in only a minority of patients, mainly those who were highly symptomatic or had cancer.
BACKGROUND: Dyads receiving palliative care for advanced heart failure are at risk for the loss of feeling safe, experienced as a fractured sense of coherence, discontinuity in sense of self and relationships, and strained social connections and altered roles. However, few theory-based interventions have addressed feeling safe in this vulnerable population.
PURPOSE: The purpose of this article is to describe the development of the Nostalgic Remembering Intervention to strengthen feeling safe and promote adaptive physiological and psychological regulation in dyads receiving palliative care for heart failure.
CONCLUSIONS: Systematic intervention development is essential to understand what, for whom, why, and how an intervention works in producing outcomes. Program theory provided a systematic approach to the development of the Nostalgic Remembering Intervention, including conceptualization of the problem targeted by the intervention, specification of critical inputs and conditions that operationalize the intervention, and understanding the mediating processes leading to expected outcomes.
CLINICAL IMPLICATIONS: Creating a foundation for cardiovascular nursing research and practice requires continued, systematic development of theory-based interventions to best meet the needs of dyads receiving palliative care for heart failure. The development of the Nostalgic Remembering Intervention to strengthen feeling safe in dyads provides a novel and relevant approach.
Objectives: Palliative care (PC) has gained rising attention in a holistic treatment approach to chronic heart failure (HF). It is unclear whether there is a need for PC in left ventricular assist device (LVAD) patients or heart transplant recipients.
Methods: In a cross-sectional explorative pilot study, outpatients after heart transplantation (HTx, n = 69) or LVAD implantation (n = 21) underwent screening for palliative care (PC) need and evaluation of symptom burden and psychological distress using tools that emanated from palliative cancer care.
Results: The ‘Palliative Care Screening Tool for Heart Failure Patients’ revealed scores of 4.3 ± 2.2 in HTx and 6.0 ± 2.1 in LVAD patients (max. 12 points, P = 0.003), indicating the need for PC (=5 points) in 32% of HTx and 67% of LVAD patients. Symptom burden, as assessed by MIDOS (‘Minimal Documentation System for Palliative Care’) scores was substantial in both groups (4.9 ± 4.7 in HTx vs 6.6 ± 5.3 in LVAD, max. 30 points, P = 0.181). ‘Fatigue’, ‘weakness’ and ‘pain’ were the most frequent symptoms. Using the ‘Distress-Thermometer’, ‘clinically relevant’ distress was detected in 57% of HTx and 47% of LVAD patients (P = 0.445). In the PHQ-4 (‘4-Item Patient Health Questionnaire’), 45% of LVAD patients, compared to only 10% of HTx patients, reported mild symptoms of anxiety and depression.
Conclusions: Findings reveal substantial need for PC in LVAD patients and, to a lesser extent, in heart transplant recipients, suggesting that multi-disciplinary PC should be introduced into routine aftercare.
CONTEXT: As the use of veno-arterial extracorporeal membrane oxygenation (VA-ECMO) increases, decisions regarding withdrawal from VA-ECMO increase.
OBJECTIVES: To evaluate the clinical characteristics of patients withdrawn from VA-ECMO and the role of palliative care consultation in the decision.
METHODS: We retrospectively reviewed adult patients with cardiogenic shock requiring VA-ECMO at our institution withdrawn from VA-ECMO between January 1, 2014 and May 31, 2019. The relationship between clinical characteristics and palliative care visits was assessed and documented reasons for withdrawal were identified.
RESULTS: Of 460 patients who received VA-ECMO, 91 deceased patients (19.8%) were included. Forty-two patients (44.8%) had a palliative care consultation. The median duration on VA-ECMO was 4.0 days (IQR 8.8), and it was significantly longer for patients with palliative care consultation than those without (8.8 days vs 2.0 days, p<0.001). Amongst those with palliative care consultation, those with early consultation (within 3 days) had significantly shorter duration of VA-ECMO compared with those with late consultation (7.6 days vs 13.5 days, t=2.022, p=0.008). Twenty-two (24.2%) had evidence of brain injury, which was significantly associated with patient age, number of comorbidities, duration of VA-ECMO, number of life-sustaining therapies, and number of palliative care visits (Wilks lambda 0.8925, DF 5,121, p = 0.016). Presence of brain injury was associated with fewer palliative care visits (t=2.82, p=0.006).
CONCLUSION: Shorter duration of VA-ECMO support and presence of brain injury were associated with fewer palliative care visits. Decisions around withdrawal of VA ECMO support might be less complicated when patient's medical conditions deteriorate quickly or when neurological prognosis seems poor.
PURPOSE OF REVIEW: Palliative care is increasingly acknowledged as beneficial in supporting patients and families affected by heart failure, but policy documents have generally focused on the chronic form of this disease. We examined palliative care provision for those with acute heart failure, based on the recently updated National Consensus Project Clinical Practice Guidelines for Quality Palliative Care.
RECENT FINDINGS: The commonest reason for hospitalization in those > 65 years, acute heart failure admissions delineate crisis points on the unpredictable disease trajectory. Palliative care is underutilized, often perceived as limited to end-of-life care rather than determined by regular systematic needs assessment. No dominant paradigm of palliative care provision has emerged from the nascent evidence base related to this clinical cohort, underscoring the need for further research. Embedding palliative support as mainstream to heart failure care from the point of diagnosis may better ensure treatment strategies for those admitted with acute heart failure remain consistent with patients' preferences and values.
BACKGROUND: The delivery of palliative care interventions is not widely integrated in chronic heart failure care as the recognition of palliative care needs is perceived as difficult. Tools may facilitate healthcare professionals to identify patients with palliative care needs in advanced chronic heart failure.
AIM: To identify tools to help healthcare professionals recognize palliative care needs in patients with advanced chronic heart failure.
DESIGN: This systematic review was registered in the PROSPERO database (CRD42019131896). Evidence of tools' development, evaluation, feasibility, and implementation was sought and described.
DATA SOURCES: Electronic searches to identify references of tools published until June 2019 were conducted in MEDLINE, CINAHL, and EMBASE. Hand-searching of references and citations was undertaken. Based on the identified tools, a second electronic search until September 2019 was performed to check whether all evidence about these tools in the context of chronic heart failure was included.
RESULTS: Nineteen studies described a total of seven tools. The tools varied in purpose, intended user and properties. The tools have been validated to a limited extent in the context of chronic heart failure and palliative care. Different health care professionals applied the tools in various settings at different moments of the care process. Guidance and instruction about how to apply the tool revealed to be relevant but may be not enough for uptake. Spiritual care needs were perceived as difficult to assess.
CONCLUSION: Seven tools were identified which showed different and limited levels of validity in the context of palliative care and chronic heart failure.
OBJECTIVE: Determine the role of palliative care on terminal code status and setting of death for those with heart failure.
BACKGROUND: Although palliative care consultation (PCC) has increased for many conditions, PCC has not increased in those with cardiovascular disease. While it has been shown that the majority of those with heart failure die in medical facilities, the impact of PCC on terminal code status and setting of death requires further analysis.
METHODS: Patients admitted with heart failure between 2014-2015 at an academic VA Healthcare System were reviewed. Primary outcome was terminal code status. Secondary outcomes included setting of death, hospice utilization, and mortality scores. Student t-testing and Chi-square testing were performed where appropriate.
RESULTS: 334 patients were admitted with heart failure and had a median follow up time of 4.3 years. 196 patients died, with 122 (62%) receiving PCC and 74 (38%) without PCC. Patients were more likely to have terminal code statuses of comfort measures with PCC (OR = 4.6, p = 0.002), and less likely to be full code (OR = 0.09, p < 0.001). 146 patients had documented settings of death and were more likely to receive hospice services with PCC (OR 6.76, p < 0.001). A patient's chance of dying at home was not increased with PCC (OR 0.49, p = 0.07), but they were more likely to die with inpatient hospice (OR = 17.03; p < 0.001).
CONCLUSION: Heart failure patients who received PCC are more likely to die with more defined care preferences and with hospice services. This does not translate to dying at home.
OBJECTIVES: To estimate the content validity of the Symptom Control nursing outcome for heart failure patients in palliative care and to analyze the influence of experts' experience in the judgment of the relevance of indicators.
METHODS: A methodological study conducted in São Paulo in 2018, with an adaptation of Fehring's validation model. The relevance of the 11 outcome indicators was assessed by 19 experts by means of an electronically submitted survey. The influence of the experts' experience on judgment was analyzed by the Wilcoxon-Mann-Whitney test and by Kendall's Tau correlation.
RESULTS: The indicators were considered pertinent; with 54.5% classified as critical. There was no association between the weighted means of the indicators and the experts' experience.
CONCLUSIONS: The indicators analyzed are relevant for the evaluation of the Symptom Control outcome in this group of patients. The experts' judgment was not influenced by their area of clinical experience or by their experience with the Nursing Outcomes Classification (NOC).
Background: Many patients with heart failure (HF) have not addressed end-of-life planning.
Objective: Evaluate the impact of an advance care planning (ACP) intervention on patients hospitalized with acute decompensated HF.
Methods: A convenience sample of patients hospitalized with HF completed the Advance Directive Attitude Survey (ADAS) before The Conversation Project intervention. Post-intervention scores were collected after 30 days.
Results: All participants (n = 30) had positive pre-intervention ADAS scores. Post-intervention scores revealed no significant change (p = 0.53). Twenty eight percent completed an advance directive (AD), 64% discussed the AD with a significant other, 40% established a surrogate decision maker, and 12% discussed the AD with a provider.
Conclusions: Advance directive completion rates were low despite participants having positive attitudes regarding their value. Discussion of goals between the patient and significant other is an important factor in end-of-life planning. Further studies are needed on strategies to improve provider discussions and AD completion.
CONTEXT: Improving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal.
OBJECTIVES: To determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients.
METHODS: Retrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013-2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family-reported "excellent" EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation (PCC), receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit (ICU) death.
RESULTS: Of 6,256 patients, mean age was 77.4 (standard deviation=11.1), 98.3% were male, 75.7% white and 18.2% were black. Median hospital scores of "excellent" EOLC ranged from 41.3% (Interquartile range (IQR) 37.0-44.8%) in the lowest quintile to 76.4% (IQR 72.9-80.3%) in the highest. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly though not significantly more likely to receive a PCC (adjusted proportions 57.6% vs. 51.2%; p=0.32); but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%) and hospice (59.7% vs. 35.9%) and were less likely to die in the ICU (15.9% vs. 31.0%; p<0.05 for all).
CONCLUSION: Patients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best-practices in EOLC across healthcare systems.
Hospice agencies serve an expanding population of patients with varying disease conditions and sociodemographic characteristics. Patients with heart failure represent a growing share of hospice deaths in the United States. However, limited research has explored the perspectives of hospice interdisciplinary team members regarding how patients with heart failure and their families navigate hospice care. We sought to address this research gap by conducting qualitative interviews with hospice interdisciplinary team members at a large, not-for-profit hospice agency in New York City (N = 32). Five overarching themes from these interviews were identified regarding components that members of the hospice interdisciplinary team perceived as helping patients with heart failure and their families navigate hospice care. These themes included (1) “looking out: caregiving support in hospice care,” (2) “what it really means: patient knowledge and understanding of hospice,” (3) “on board: acceptance of death and alignment with hospice goals,” (4) “on the same page: communication with the hospice team,” and (5) “like a good student: symptom management and risk reduction practices.” Interdisciplinary team members delineated several components that influence how patients with heart failure and their families navigate hospice services and communicate with care providers. Hospice agencies should consider policies for augmenting services among patients with heart failure to improve their understanding of hospice, supplement available caregiving supports for patients without them, and remove communication barriers.
There is limited evidence on the relationships of preference for end-of-life life-sustaining treatments [LSTs] and diagnostic contexts like heart failure [HF] or cancer, and patient attitudes toward and perceived susceptibility to use advance directives [ADs]. Thus, this study aimed to compare attitudes and perceived susceptibility between HF patients and community-dwelling patients with cancer, and examine the associations of these variables with their preference for each LST (cardiopulmonary resuscitation [CPR], ventilation support, hemodialysis, and hospice care). Secondary data were obtained from 36 outpatients with HF (mean age, 65.44 years; male, 69.4%) and 107 cancer patients (mean age, 67.39 years; male, 32.7%). More patients with HF preferred CPR than cancer patients (41.7% and 15.9%, 2 = 8.88, P = 0.003). Attitudes and perceived susceptibility were similar between the two diagnostic cohorts. HF patients and those with more positive attitudes had greater odds of preferring CPR (odds ratio [OR] = 3.02, confidence interval [CI] = 1.19, 7.70) and hospice care (OR = 1.14, CI = 1.06, 1.23), respectively. HF diagnosis and AD attitudes increased the preference for CPR and hospice care, respectively. This suggests that it is important to gain positive attitudes toward ADs and consider diagnostic context to facilitate informed decision-making for LSTs.
Background: Patients with heart failure have significant symptom burden, care needs, and often a progressive course to end-stage disease. Palliative care referrals may be helpful but it is currently unclear when patients should be referred and by whom. We conducted a systematic review of the literature to examine referral criteria for palliative care among patients with heart failure.
Methods: We searched Ovid, MEDLINE, Ovid Embase, and PubMed databases for articles in the English language from the inception of databases to January 17, 2019 related to palliative care referral in patients with heart failure. Two investigators independently reviewed each citation for inclusion and then extracted the referral criteria. Referral criteria were then categorized thematically.
Results: Of the 1199 citations in our initial search, 102 articles were included in the final sample. We identified 18 categories of referral criteria, including 7 needs-based criteria and 10 disease-based criteria. The most commonly discussed criterion was physical or emotional symptoms (n=51 [50%]), followed by cardiac stage (n=46 [45%]), hospital utilization (n=38 [37%]), prognosis (n=37 [36%]), and advanced cardiac therapies (n=36 [35%]). Under cardiac stage, 31 (30%) articles suggested New York Heart Association functional class =III and 12 (12%) recommended New York Heart Association class =IV as cutoffs for referral. Prognosis of =1 year was mentioned in 21 (21%) articles as a potential trigger; few other criteria had specific cutoffs.
Conclusions: This systematic review highlighted the lack of consensus regarding referral criteria for the involvement of palliative care in patients with heart failure. Further research is needed to identify appropriate and timely triggers for palliative care referral.
PURPOSE OF REVIEW: Palliative care follows a philosophy of care that focuses upon the quality of life in patients with chronic or life-threatening illness. It also focuses upon the needs of their families which is a wider scope of care. Cardiovascular disease, and specifically heart failure, affects millions of patients and family members who have a symptom burden that exceeds that of many cancers and other chronic diseases.
RECENTLY FINDINGS: Historically palliative care has been viewed as an alternative to curative therapies, but over time, it is now recognized that it should be implemented earlier in the course of chronic diseases. Although non-oncologic patients now comprise over half of the patient seen by palliative care, patients with cardiovascular disease are still not being referred to palliative care. Palliative care goes beyond advance directives and end of life planning. There is a need to continue to expand the view of palliative care to encompass interventions that help improve the overall health of these patients, including their psychosocial well-being and quality of life. The collection of papers in this journal provides insight into the breadth of palliative care for patients with heart failure and other cardiovascular diseases.
Heart failure is a leading cause of readmissions in the United States, although treatment has come along away, palliative care is often not appropriately offered in advanced heart failure. The purpose of this study was to use a large database of national in-patient sample to find out the use of palliative care in acute heart failure admissions. Data from 2002 to 2017 was used for analysis. Simple linear regression was used for trend analysis over the years. Variables that were statistically significant in univariate analysis were used in single-step (entry method) multiple logistic analysis. The use of palliative care was found to be low at 4.1%, although recent trends have shown an increase (from 0.4% in 2002 to 6.2% in 2017). Women (0.3% in 2002 to 6.5% in 2017) and Caucasians (0.6% in 2002 to 6.9% in 2017) had a higher proportion of PC encounters as compared to men (0.5% in 2002 to 5.9% in 2017) and other racial minorities, increasing age (OR, 1.04[CI; 1.03-1.04], p < 0.01), female gender (OR, 1.03[CI; 1.02-1.03], p < 0.01), do not resuscitate status (OR, 10.62[CI; 10.53-10.70], p < 0.01), diabetes mellitus (OR, 1.10[CI; 1.01-1.11], p < 0.01), liver disease (OR, 1.63[CI; 1.60-1.66], p < 0.01), renal failure (OR, 1.40[CI; 1.39-1.41], p < 0.01), acute myocardial infarction (OR, 1.28[CI; 1.27-1.30], p < 0.01), and cardiogenic shock (OR, 2.89[CI; 2.84-2.93], p < 0.01) were associated with higher odds of having PC encounter. In conclusion, the use of palliative care has increased in the United States over the years, however, it is still low as compared to other high-income countries.
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.