As left ventricular assist device (LVAD) technology continues to offer longer and better lives to patients with advanced heart failure, it also redefines how these patients die. This evolving dying process is unfamiliar to many clinicians and can be distressing for patients and their caregivers. No element of this process is more visceral or immediate than the act of withdrawing LVAD support, particularly for a patient who is awake and interactive. Despite ongoing improvement in survival and functional outcomes, LVAD patients frequently experience deaths characterized by distress, confusion, and a lack of control that fail to meet many of the criteria for high-quality end-of-life care.
Purpose of Review: Although the utilization of mechanical circulatory support (MCS) devices is increasing, ethical dilemmas regarding device deactivation and dying process persist, potentially complicating delivery of optimal and compassionate care at end-of-life (EOL). This review aims to study EOL challenges, left ventricular assist devices (LVADs) as a nuanced life support treatment, legal history in the US impacting EOL care, and suggestions to improve EOL care for patients on MCS support.
Recent Findings: Recent studies have demonstrated challenging aspects of EOL care for patients on LVAD support: low use of advanced directives, high rates of surrogate decision-making due to lack of patient capacity, difficult decision-making involving LVAD deactivation even with cooperating patients, and high rates of death in the hospital and ICU settings. Recent studies also suggest lack of consensus even among clinicians in approaching LVAD deactivation as beliefs equating LVAD deactivation with physician-assisted suicide and/or euthanasia remain. Optimal care at EOL will likely require collaborative efforts among multiple specialties, caregivers, and patients.
Summary: In light of the complex medical, logistical, and ethical challenges in EOL care for LVAD patients, there is room for improvement by multidisciplinary efforts to reach consensus about LVAD deactivation and best practices for EOL care, development and implementation of LVAD-specific advance planning, and protocols for LVAD deactivation. Programmatic involvement of hospice and palliative care in the continuum of care of LVAD patients has the potential to increase and improve advance care planning, support surrogate decision-making, improve EOL compassionate care, and to support caregivers.
Background: Refractory angina can have a significant effect on quality of life. Non-invasive interventions have been suggested but there are few guidelines on management. Our aim was to systematically review all studies that reported non-invasive interventions for refractory angina and report on their effectiveness and safety.
Methods: We performed a literature search of six databases and a grey literature search. Treatments considered first line or second line according to the European Society of Cardiology were excluded, as were interventions that had undergone review within the last 3 years. Design, setting and outcomes were extracted and quality was assessed. A narrative synthesis was undertaken, including an analysis of adverse effects.
Results: 4476 studies were screened, 14 studies were included in our analysis. Interventions were specialist multidisciplinary programmes, transcutaneous electrical nerve stimulation (TENS), perhexiline, medical optimisation, morphine and intranasal alfentanil. The effects of specialist programmes and perhexiline treatment were mixed. Positive effects were reported with TENS, opioids and medical optimisation, with improvements in symptoms, exercise capacity and quality of life. No major adverse effects were noted in any of the treatments.
Conclusion: There are non-invasive treatments for refractory angina that are overlooked by current guidelines. While the quality of these studies varies, positive changes have been reported in symptoms, exercise tolerance and quality of life with few adverse effects. There is a need for further research into these treatments which could be useful within the contexts of cardiology and palliative care.
Deactivation of an implantable cardioverter-defibrillator (ICD) is a critical issue in the advance care planning (ACP) of ICD recipients; however, related perspectives have rarely been explored. Thus, this study aimed to provide an initial investigation of ICD recipients’ perceived susceptibility and barriers/benefits regarding ACP and/or advance directives (ADs), and associations of these modifiable factors with preferences for end-of-life life-sustaining treatments (LSTs) (cardiopulmonary resuscitation (CPR), ventilator support, hemodialysis, and hospice care). Using a descriptive correlational design, 48 ICD recipients (age, 50.1 years; male, 85.4%) completed survey questionnaires. “No burden on family” was the most highly valued (59.1%), followed by “comfortable death” (20.4%), and both (11.4%). LST preference was 43.8% for ventilator support, 45.8% for both hemodialysis and hospice care, and 54.2% for CPR. Perceived susceptibility to having unexpected end-of-life experiences increased the likelihood of preference for aggressive LSTs, with preferences increasing by 15% for CPR, 17% for ventilator support, and 23% for hemodialysis. A non-modifiable factor, older age, was the only predictor of increased preference for hospice care (odds ratio = 1.09, p = 0.016). Among the modifiable factors, a higher perceived susceptibility increased the likelihood of aggressive LST preferences. The findings imply that to facilitate informed decisions for LSTs, early ACP discussion could be helpful and enhance these modifiable factors.
The implantable cardioverter defibrillator (ICD) is effective in terminating life-threatening arrhythmias. However, in the last phase of life, ICD shocks may no longer be appropriate. Guidelines recommend timely discussion with the patient regarding deactivation of the shock function of the ICD. However, research shows that such conversations are scarce, and some patients experience avoidable and distressful shocks in the final days of life. Barriers such as physicians’ lack of time, difficulties in finding the right time to discuss ICD deactivation, patients’ reluctance to discuss the topic, and the fragmentation of care, which obscures responsibilities, prevent healthcare professionals from discussing this topic with the patient. In this point-of-view article, we argue that healthcare professionals who are involved in the care for ICD patients should be better educated on how to communicate with patients about ICD deactivation and the end of life. Optimal communication is needed to reduce the number of patients experiencing inappropriate and painful shocks in the terminal stage of their lives.
Context: Palliative care consultation before left ventricular assist device (LVAD) surgery (PreVAD) has been recommended, but its impact on goal-concordant care is unknown.
Objectives: To describe the association between patients' unique unacceptable condition articulated during PreVAD with the actual care provided at the end of life.
Methods: Among 308 patients who had PreVAD between 2014 and 2019, 72 patients died before December 31, 2019. Based on the answers to the question, “Is there any condition you would find unacceptable?” patients were divided into ARTICULATE (those who could articulate their unacceptable condition clearly, n = 58) and non-ARTICULATE (those who could not, n = 14). Circumstances at death and end-of-life care were compared between groups.
Results: Mean age at death was 63.2 years (SD ±13.1), 56 patients (77.8%) were males, and median duration of LVAD was 167.5 days (interquartile range 682). ARTICULATE patients died less frequently in the intensive care unit than non-ARTICULATE patients (33 patients, 57.9% vs. 13 patients, 92.9%; P = 0.014) and had ethics consultation less frequently (four patients, 6.9% vs. five patients, 35.7%; P = 0.011). Frequency of LVAD withdrawal was similar in both groups. Among ARTICULATE cohort, the unacceptable condition articulated in PreVAD did not seem to influence decisions at the end of life.
Conclusion: Patients who articulated their unacceptable condition clearly before LVAD surgery had less frequent ethics consultations and received less intensive care at the end of life, but it did not seem to affect the decision of LVAD withdrawal. It may be more important to engage in discussions around their unacceptable conditions, rather than the specific condition articulated. The question of an unacceptable condition should be part of any routine palliative care consultation before LVAD surgery.
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.
Objective: To present our center’s experience with terminal extubation in 3 palliative critical care home transports from the Pediatric Cardiac Intensive Unit.
Design: All cases were identified from our Cardiovascular intensive care unit ( CVICU). Patients were terminally ill children with no other surgical or medical option who were transported home between 2014 and 2018, for terminal extubation and end-of-life care according to their families’ wishes.
Interventions: The patients were 7, 9 months, and 19 years; and they had very complex and chronic conditions. The families were approached by the CVICU staff during multidisciplinary meetings, where goals of care were established. Parental expectations were clarified, and palliative care team was involved, as well as home hospice was arranged pre transfer. The transfer process was discussed and all the needs were established. All patients had unstable medical conditions, with needs for transport for withdrawal of life support and death at home. Each case needed a highly trained team to support life while in transport. The need of these patients required coordination with home palliative care services, as well as community resources due to difficulty to get in their homes.
Conclusions: Transportation of pediatric cardiac critical care patients for terminal extubation at home is a relatively infrequent practice. It is a feasible alternative for families seeking out of the hospital end-of-life care for their critically ill and technology dependent children. Our single-center experience supports the need for development of formal programs for end-of-life critical care transports.
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.
Background: Use of implantable cardioverter defibrillators is increasingly common. As patients approach the end of life, it is appropriate to deactivate the shock function.
Aim: To assess the prevalence of implantable cardioverter defibrillator reprogramming to deactivate the shock function at the end of life and the prevalence of advance directives among this population.
Design: Following a previously established protocol available in PROSPERO, we performed a narrative synthesis of our findings and used the logit transformation method to perform our quantitative synthesis.
Data sources: We searched seven bibliographic databases (Embase, Cochrane Central register of controlled Trials, Medline-Ovid, Web-of-Science, Scopus, PsychInfo, and CINAHL) and additional sources until April 2019.
Results: Of the references we identified, 14 were included. We found a pooled prevalence of implantable cardioverter defibrillator reprogramming at the end of life of 28% (95% confidence interval, 22%–36%) with higher reprogramming rates after the recommendations for managing the device at the end of life were published. Among patients with advance directives, the pooled prevalence of advance directives that explicitly mentioned the device was 1% (95% confidence interval, 1%–3%).
Conclusions: The prevalence of implantable cardioverter defibrillator reprogramming and advance directives that explicitly mentioned the device was very low. Study data suggested reprogramming decisions were made very late, after the patient experienced multiple shocks. Patient suffering could be ameliorated if physicians and other healthcare professionals adhere to clinical guidelines for the good management of the device at the end of life and include deactivating the shock function in the discussion that leads to the advance directive.
Ischaemic heart disease (IHD), in particular acute coronary syndrome (ACS), comprising ST-elevation myocardial infarction, non-ST-elevation myocardial infarction and unstable angina, is the leading cause of death worldwide. Age is a major predictor of adverse outcome following ACS. COVID-19 infection seems to escalate the risk in older patients with heart disease. Increasing odds of in-hospital death is associated with older age following COVID-19 infection. Importantly, it seems older patients with comorbidities such as cardiovascular disease (CVD), in particular IHD, diabetes and hypertension, are at the highest risk of mortality following COVID-19 infection. The evidence is sparse on the optimal care of older patients with ACS with lack of robust randomised controlled trials. In this setting, with the serious threat imposed by the COVID-19 pandemic in the context of rapidly evolving knowledge with much unknown, it is important to weigh the risks and benefits of treatment strategies offered to older patients. In cases where risks outweigh the benefits, it might not be an unreasonable option to treat such patients with a conservative or a palliative approach. Further evidence to elucidate whether invasive management is beneficial in older patients with ACS is required out-with the COVID-19 pandemic. Though it is hoped that the actual acute phase of COVID-19 infection will be short lived, it is vital that important clinical research is continued, given the long-term benefits of ongoing clinical research for patients with long-term conditions, including CVD. This review aimed to evaluate the challenges and the management strategies in the care of older patients presenting with ACS in the context of the COVID-19 pandemic.
PURPOSE: Women who experience out-of-hospital cardiac arrest have similar rates of survival to hospital admission as men; however, women are less likely to survive to hospital discharge. We hypothesized that women would have higher rates of "do not attempt resuscitation" (DNAR) orders and that this order would be associated with lower use of aggressive interventions.
METHODS: We identified adult hospital admissions with a diagnosis of cardiac arrest (ICD-9 427.5) from the 2010 California State Inpatient Dataset. Multivariable logistic regression was used to test the association between patient sex and a DNAR order within the first 24 h of admission, adjusting for patient demographic characteristics and comorbid medical conditions. In secondary analysis, procedures performed after establishment of DNAR order and survival to hospital discharge were compared by sex.
FINDINGS: We analyzed 6562 patients (44% women, 56% men) who experienced out-of-hospital cardiac arrest and survived to hospital admission. In unadjusted analysis, more women than men had establishment of a DNAR order during the first 24 h of admission (23.4% versus 19.3%; P < 0.01). After adjusting for age, race, and comorbid conditions, women remained significantly more likely to have a DNAR order established during the first 24 h of their hospital admission after cardiac arrest compared with men (odds ratio = 1.23; 95% CI, 1.09-1.40). No sex difference was found in procedures used after DNAR order was established.
IMPLICATIONS: Female survivors of cardiac arrest are significantly more likely than men to have a DNAR order established within the first 24 h of in-hospital treatment. The establishment of a DNAR order is associated with patients undergoing fewer procedures than individuals who do not have a DNAR order established. Given that patients who have a DNAR order receive less-aggressive intervention after arrest, it is possible that an early DNAR order may contribute to sex differences in survival to hospital discharge.
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: 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.
According to the World Health Organization, palliative care must be available for everyone with life-threatening diseases. However, in daily practice the primary focus worldwide is on cancer patients. The aim of the article was to generate a national position statement as the first step in implementing palliative care in severe heart disease with focus on advanced heart failure, including tools to identify the need for and timing of palliative care and how palliative care could be organized in Denmark. A task force was formed in the Danish Society of Cardiology Heart Failure Working Group, and the position statement was prepared in collaboration with members from a broad group of specialties, including palliative medicine. Because of major gaps in evidence, the position statement was based on small and low-quality studies and clinical practice statements. This position statement was aligned with the European Society of Cardiology recommendation, focusing on relieving suffering from the early disease stages parallel to standard care and supplementing life-prolonging treatment. The statement delivers practical guidance on clinical aspects and managing symptoms during the three stages of advanced heart disease. Furthermore, the statement describes the importance of communication and topics to be broached, including deactivating implantable cardioverter defibrillators. The statement recommends a targeted effort on organizational strategies using high-quality assessment tools and emphasizes multidisciplinary and intersectoral collaboration. Danish cardiologists supported by allied professionals acknowledge the importance of palliative care in advanced heart disease. This national position statement intended to inform and influence policy and practice and can hopefully inspire other countries to take action toward implementing palliative care in advanced heart disease.
Many cardiovascular diseases lead to heart failure, which is a progressive syndrome causing significant distress and limiting the quality of life, despite optimal cardiologic treatment. It is estimated that about 26 000 people in Poland suffer from advanced heart failure, and this number is growing. That is why palliative care (PC) dedicated to people living with end-stage cardiac diseases should be urgently implemented in Poland. Well-organized PC may not only relieve symptoms and improve quality of life in people living with cardiac diseases not responding to treatment but also support patients and their families during the dying process. Palliative care in patients with cardiac diseases should be continued during the end-of-life period. It should be implemented regardless of prognosis, and adjusted to patients’ needs. Two approaches to PC are presented in this expert opinion. The first one (generic) is provided by all medical professionals incorporating PC principles into the usual patient care. The second approach, namely, specialized PC, is ensured by a multiprofessional team or at least a PC specialist who received appropriate training in PC. The model of needs-based (not prognosis-based) implementation of PC is discussed in this paper. Symptom control, support in decision-making, and sensitive, open communication are considered integral elements of PC interventions. Medical professionals developing PC in Poland should think about groups of patients with special needs like those with valvular heart disease, grown-up congenital heart disease, and pulmonary arterial hypertension, as well as elderly people. This consensus document presents main recommendations for future PC organization in Poland. Among others, we suggest changing the Polish National Health Fund reimbursement rules regarding PC and improving cardiologist education on PC.
BACKGROUND: Despite improvements in palliative care for critically ill children, the characteristics of end-of-life care for pediatric patients with advanced heart disease are not well-known. We investigated these characteristics among hospitalized children with advanced heart disease in a tertiary referral center in Korea.
METHODS: We retrospectively reviewed the records of 136 patients with advanced heart disease who died in our pediatric department from January 2006 through December 2013.
RESULTS: The median age of patients at death was 10.0 months (range 1 day-28.3 years). The median duration of the final hospitalization was 16.5 days (range 1-690 days). Most patients (94.1%) died in the intensive care unit and had received mechanical ventilation (89.7%) and inotropic agents (91.2%) within 24 hours of death. The parents of 74 patients (54.4%) had an end-of-life care discussion with their physician, and the length of stay of these patients in the intensive care unit and in hospital was longer. Of the 90 patients who had been hospitalized for 7 days or more, the parents of 54 patients (60%) had a documented end-of-life care discussion. The time interval from the end-of-life care discussion to death was 3 days or less for 25 patients.
CONCLUSION: Children dying of advanced heart disease receive intensive treatment at the end of life. Discussions regarding end-of-life issues are often postponed until immediately prior to death. A pediatric palliative care program must be implemented to improve the quality of death in pediatric patients with heart disease.
In the last decades, new technologies have improved the survival of patients affected by chronic illnesses. Among them, left ventricular assist device (LVAD) has represented a viable solution for patients with advanced heart failure (HF). Even though the LVAD prolongs life expectancy, patients’ vulnerability generally increases during follow up and patients’ request for the device withdrawal might occur. Such a request raises some ethical concerns in that it directly hastens the patient’s death. Hence, in order to assess the ethical acceptability of LVAD withdrawal, we analyse and examine an ethical argument, widely adopted in the literature, that we call the “descriptive approach”, which consists in giving a definition of life-sustaining treatment to evaluate the ethical acceptability of treatment withdrawal. Focusing attention on LVAD, we show criticisms of this perspective. Finally, we assess every patient’s request of LVAD withdrawal through a prescriptive approach, which finds its roots in the criterion of proportionality.
The purpose of this article is to describe palliative care incorporation within the care of heart transplant patients. Palliative care is a holistic approach to care that includes symptom management and goal setting to improve patients’ quality of life. Palliative care is designed to be used with patients who have chronic illness that impacts quality of life and should be incorporated early in the disease. All providers have a responsibility to be knowledgeable in palliative care approaches and to know when to refer a patient for specialty palliative care services. This article will describe palliative care, research study findings, and current professional guideline recommendations for patients. The article also describes challenges and barriers to the use of palliative care in heart transplant patients and strategies to address these challenges and barriers.
We assessed the trend of palliative care (PC) referrals and its effect on hospitalization cost and length of stay (LOS) in ruptured aortic aneurysm (rAA). The Nationwide Inpatient Sample from 2005 to 2014 was used to identify admissions with age =50 and rAA. A total of 54 134 rAA admissions were identified and 5019 (9.3%) had PC referrals. During the study period, PC referral rate increased from 0.97% to 15.3% (P trend < .0001). Length of stay (1.7 vs 2.8 days, adjusted mean ratio [aMR] = 0.62, 95% confidence interval [CI]: 0.58-0.66), and cost (US$7778 vs US$13 575, aMR = 0.57, 95% CI: 0.52-0.63) were significantly lower in rAA admissions that did not undergo interventions. In the percutaneous repair group, LOS was similar but the cost was higher (US$61 759 vs US$52 260, aMR = 1.18, 95% CI: 1.05-1.30), whereas in surgical repair group, LOS was shorter (4.6 vs 5.9 days, aMR = 0.77, 95% CI: 0.73-0.82) but the cost was higher (US$59 755 vs US$52 523, aMR = 1.14, 95% CI: 1.02-1.28). Palliative care could shorten LOS and save hospitalization cost in rAA admissions not a candidate for repair. Further studies are required to investigate the variable effects of PC on rAA.