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.
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).
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.
PURPOSE: Despite tremendous advances in medical and surgical care, some adults with congenital heart disease (ACHD) develop terminal conditions where therapy is limited. This paper reviews the important role of palliative care, advance care planning (ACP), and end-of-life (EOL) care in ACHD.
RECENT FINDINGS: Recent studies suggest that ACP is infrequently utilized in ACHD. Patients generally express interest in learning more about EOL care, though few ACHD providers have received adequate training to confidently conduct these discussions. Most barriers to communication are largely addressable, and an organized approach to ACP that encourages active patient participation followed by clear documentation is more likely to be successful. Palliative care appears complementary to standard medical care and can be introduced at any stage of illness, with proven benefit in similar patient populations. ACP is an important part of the routine care for all ACHD. Patient preferences should be identified early and palliative methods incorporated whenever necessary.
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.
OBJECTIVE: Patients with left ventricular assist devices (LVADs) need expert palliative care at the end of life. In the U.S., hospice may provide this care, but few patients enroll and information about hospice experience with LVAD-implanted patients is limited.
AIM: To describe hospice experience with LVAD-implanted patients.
METHODS: This is a retrospective descriptive study of all LVAD-implanted patients admitted to a hospice agency. Data were extracted from the electronic health record.
RESULTS: The 13 patients had a mean age of 63 years (range 20 to 89) and a mean LVAD duration of 32.5 months (range 8.2 to 70.0). Hospice diagnosis was heart failure in 10 patients and cancer in 3; all patients were multimorbid. Eight patients enrolled in hospice on one occasion, four had two enrollments, and one had five. All patients received services for <180 days, three for <7 days and four patients for >90 days. Just-in-time in-servicing was used to prepare hospice teams for challenging care needs, including bleeding, delirium, infections and mechanical failure. Of the nine patients who died while receiving hospice services, one enrolled with a plan to deactivate the LVAD immediately after hospice enrollment and six died following discontinuation of the LVAD or other life-sustaining therapy during the course of hospice care. Five deaths occurred in a hospice inpatient unit.
CONCLUSION: To provide specialist palliative care to LVAD-implanted patients, hospices must be prepared to manage complex and highly varied needs. To do this, hospices must have adequate staff support and access to acute care.
An 87-year-old man with nonischemic cardiomyopathy, an implantable cardioverter defibrillator (ICD), and stage IV renal cell carcinoma presented to the emergency department with fever. On arrival, his temperature was 103 °F, his heart rate 120 beats per minute, and his blood pressure 80/56 mm Hg. His laboratory results were notable for a white blood cell count of 16 000/µL (to convert to ×109/L, multiply by 0.001) and urinalysis showing leukocyte esterase, nitrites, and bacteria. His condition initially improved with volume resuscitation and treatment with ceftriaxone and was admitted with sepsis presumed secondary to a urinary source. On admission, the patient reported that he had previously signed an out-of-hospital do-not-resuscitate (DNR) order and that he wanted to continue his DNR status while hospitalized.
Disconnecting a patient from artificial life support, on their request, is often if not always a matter of letting thcardiem die, not killing them-and sometimes, permissibly doing so. Stopping a patient's heart on request, by contrast, is a kind of killing, and rarely if ever a permissible one. The difference seems to be that procedures of the first kind remove an unwanted external support for bodily functioning, rather than intervening in the body itself. What should we say, however, about cases at the boundary-procedures involving items that seem bodily in some respects, but not others? When, for instance, does deactivating an implanted device like a pacemaker count as killing, and when as letting die? Contra existing proposals, I argue that the boundaries of the body for this purpose are not drawn at the boundaries of the self, or (if this is different) the human organism. Nor should we determine when we are killing and when we are letting die by deferring to existing practices for distinguishing ongoing from completed treatment. Rather, I argue that whether something (organic or inorganic) counts as body part for purposes of this distinction depends on the results of a normative analysis of the particular character of our rights in it-particularly, whether and in what way these rights ought to be alienable. I conclude by arguing that there are likely good reasons to recognize distinctively "bodily" rights and restrictions in at least some implantable devices.
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.
The Heart Failure Association of the European Society of Cardiology has published a previous position paper and various guidelines over the past decade recognizing the value of palliative care for those affected by this burdensome condition. Integrating palliative care into evidence-based heart failure management remains challenging for many professionals, as it includes the identification of palliative care needs, symptom control, adjustment of drug and device therapy, advance care planning, family and informal caregiver support, and trying to ensure a "good death". This new position paper aims to provide day-to-day practical clinical guidance on these topics, supporting the coordinated provision of palliation strategies as goals of care fluctuate along the heart failure disease trajectory. The specific components of palliative care for symptom alleviation, spiritual and psychosocial support, and the appropriate modification of guideline-directed treatment protocols, including drug deprescription and device deactivation, are described for the chronic, crisis and terminal phases of heart failure.
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.
Survival prospects in adults with congenital heart disease (CHD), although improved in recent decades, still remain below expectations for the general population. Patients and their loved ones benefit from preparation for both unexpected and predictable deaths, sometimes preceded by a prolonged period of declining health. Hence, advance care planning (ACP) is an integral part of comprehensive care for adults with CHD. This position paper summarizes evidence regarding benefits of and patients' preferences for ACP and provides practical advice regarding the implementation of ACP processes within clinical adult CHD practice. We suggest that ACP be delivered as a structured process across different stages, with content dependent upon the anticipated disease progression. We acknowledge potential barriers to initiate ACP discussions and emphasize the importance of a sensitive and situation-specific communication style. Conclusions presented in this article reflect agreed expert opinions and include both patient and provider perspectives.
Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semi-structured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: 1) using knowledge to combat future uncertainties; 2) unfamiliarity with and limited exposure to palliative care and ACP; 3) facilitators and barriers to engaging in palliative care and ACP; and 4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.
INTRODUCTION: Studies have suggested 5-20% of paediatric ICU patients may receive care felt to be futile. No data exists on the prevalence and impact of futile care in the Paediatric Cardiac ICU. The aim is to determine the prevalence and economic impact of futile care.
MATERIALS AND METHOD: Retrospective cohort of patients with congenital cardiac disease 0-21 years old, with length of stay >30 days and died (2015-2018). Documentation of futility by the medical team was retrospectively and independently reviewed.
RESULTS: Of the 127 deaths during the study period, 51 (40%) had hospitalisation >30 days, 13 (25%) had received futile care and 26 (51%) withdrew life-sustaining treatment. Futile care comprised 0.69% of total patient days with no difference in charges from patients not receiving futile care. There was no difference in insurance, single motherhood, education, income, poverty, or unemployment in families continuing futile care or electing withdrawal of life-sustaining treatment. Black families were less likely than White families to elect for withdrawal (p = 0.01), and Hispanic families were more likely to continue futile care than non-Hispanics (p = 0.044).
CONCLUSIONS: This is the first study to examine the impact of futile care and characteristics in the paediatric cardiac ICU. Black families were less likely to elect for withdrawal, while Hispanic families more likely to continue futile care. Futile care comprised 0.69% of bed days and little burden on resources. Cultural factors should be investigated to better support families through end-of-life decisions.
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.
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.