PURPOSE: Multimorbidity is associated with increased intensity of end-of-life healthcare. This association has been examined by number but not type of conditions. Our purpose was to understand how intensity of care is influenced by multimorbidity within specific chronic conditions to provide guidance for interventions to improve end-of-life care for these patients.
METHODS: We identified adults cared for in a multihospital healthcare system who died between 2010-2017. We categorized patients by 4 primary chronic conditions: heart failure, pulmonary disease, renal disease, or dementia. Within each condition, we examined the effect of multimorbidity (presence of 4 or more chronic conditions) on hospital and ICU admission in the last 30 days of life, in-hospital death, and advance care planning (ACP) documentation >30 days before death. We performed logistic regression to estimate associations between multimorbidity and end-of-life care utilization, stratified by the presence or absence of ACP documentation.
RESULTS: ACP documentation >30 days before death was associated with lower odds of in-hospital death for all 4 conditions both in patients with and without multimorbidity. With the exception of patients with renal disease without multimorbidity, we observed lower odds of hospitalization and ICU admission for all patients with ACP >30 days before death.
CONCLUSIONS: Patients with dementia and multimorbidity had the highest odds of high-intensity end-of-life care. For patients with dementia, heart failure, or pulmonary disease, ACP documentation >30 days before death was associated with lower likelihood of in-hospital death, hospitalization, and ICU use at end-of-life, regardless of multimorbidity.
Introduction : Les patients présentant une ischémie critique chronique des membres inférieurs ne sont pas toujours accessibles à un traitement curatif vasculaire. Les seules possibilités deviennent l’amputation, ou un traitement conservateur, limités pour soulager la douleur, et mal tolérés/acceptés. Dans cette approche palliative de l’ICC, l’objectif du travail est d’évaluer l’impact d’une neurolyse alcoolique du nerf sciatique, sur la qualité de vie (antalgie, retour à domicile), et d’évaluer le processus aboutissant à cette décision.
Méthode : Étude descriptive rétrospective sur dossiers médicaux de 13 patients en lits identifiés de soins palliatifs (LISP), entre 2017 et 2019.
Résultats : Les motivations pour la neurolyse étaient l’analgésie pérenne, le retour à domicile, le refus de l’amputation, et le caractère peu fonctionnel du membre atteint. L’analgésie était retrouvée chez tous les patients : après le geste, à J3, et à la sortie. Huit patients regagnaient le domicile (médiane de survie : 41jours). Deux étaient ré-hospitalisés. Cinq patients décédaient en LISP (médiane de 7jours postneurolyse). Un geste complémentaire était parfois nécessaire devant l’apparition d’un nouveau territoire douloureux. Des complications, attendues, étaient retrouvées. La recherche de collégialité existait pour tous les patients. La réflexion pluridisciplinaire, dans une démarche formalisée, était décrite pour la majorité.
Discussion : Cette étude suggère un bénéfice de la neurolyse, à contraster avec les limites évoquées : méthodologiques, et celles inhérentes à la technique. Elle s’envisage après évaluation et délibération pluridisciplinaire collégiale. Des travaux ultérieurs devraient préciser ces conclusions.
Simon allait souvent chez sa voisine Simone qui le gardait lorsque ses parents étaient absents. Simone est morte d'un arrêt du coeur. Dans l'appartement de Simone, Simon va découvrir les secrets que renferme la théière à voeux remplie de petits papiers écrits par Simon et Simone.
The purpose of this article is to synthesize the evidence on advance care planning (ACP), determine what is applicable to the home health (HH) setting, and find where gaps in knowledge may exist. An integrative review methodology was chosen. Although there is ample literature on the topic of ACP, most research has been conducted in the acute care, outpatient, and general community settings. There is limited literature regarding ACP with patients living with chronic cardiovascular and pulmonary illnesses, who comprise the majority of the HH population. Some literature has been published regarding the interprofessional team’s role in ACP in the HH setting. A gap in knowledge exists regarding ACP in HH, and recommendations for future research are provided.
BACKGROUND: Despite recommendations, people with heart failure have poor access to palliative care.
AIM: To identify the evidence in relation to palliative care for people with symptomatic heart failure.
DESIGN: Systematic review and narrative synthesis. (PROSPERO CRD42016029911).
DATA SOURCES: Databases (Medline, Cochrane database, CINAHL, PsycINFO, HMIC, CareSearch Grey Literature), reference lists and citations were searched and experts contacted. Two independent reviewers screened titles and abstracts and retrieved papers against inclusion criteria. Data were extracted from included papers and studies were critically assessed using a risk of bias tool according to design.
RESULTS: Thirteen interventional and 10 observational studies were included. Studies were heterogeneous in terms of population, intervention, comparator, outcomes and design rendering combination inappropriate. The evaluation phase studies, with lower risk of bias, using a multi-disciplinary specialist palliative care intervention showed statistically significant benefit for patient-reported outcomes (symptom burden, depression, functional status, quality of life), resource use and costs of care. Benefit was not seen in studies with a single component/discipline intervention or with higher risk of bias. Possible contamination in some studies may have caused under-estimation of effect and missing data may have introduced bias. There was no apparent effect on survival.
CONCLUSION: Overall, the results support the use of multi-disciplinary palliative care in people with advanced heart failure but trials do not identify who would benefit most from specialist palliative referral. There are no sufficiently robust multi-centre evaluation phase trials to provide generalisable findings. Use of common population, intervention and outcomes in future research would allow meta-analysis.
Background This study sought to evaluate the 15-year national utilization, trends, predictors, disparities, and outcomes of palliative care services (PCS) use in cardiogenic shock complicating acute myocardial infarction. Methods and Results: A retrospective cohort from January 1, 2000 through December 31, 2014 was analyzed using the National Inpatient Sample database. Administrative codes for acute myocardial infarction-cardiogenic shock and PCS were used to identify eligible admissions. The primary outcomes were the frequency, utilization trends, and predictors of PCS. Secondary outcomes included in-hospital mortality and resources utilization. Multivariable regression and propensity-matching analyses were used to control for confounding. In this 15-year period, there were 444 253 acute myocardial infarction-cardiogenic shock admissions, of which 4.5% received PCS. The cohort receiving PCS was older, of white race, female sex, and with higher comorbidity and acute organ failure. The PCS cohort received fewer cardiac procedures, but more noncardiac organ support therapies. Older age, female sex, white race, higher comorbidity, higher socioeconomic status, admission to a larger hospital, and admission after 2008 were independent predictors of PCS use. Use of PCS was independently associated with higher in-hospital mortality (odds ratio 6.59 [95% CI 6.37-6.83]; P<0.001). The cohort with PCS use had >2-fold higher in-hospital mortality, 12-fold higher use of do-not-resuscitate status, lesser in-hospital resource utilization, and fewer discharges to home. Similar findings were observed in the propensity-matched cohort. Conclusions PCS use in patients with acute myocardial infarction-cardiogenic shock is low, though there is a trend towards increased adoption. There are significant patient and hospital-specific disparities in the utilization of PCS.
Background: Current guidelines recommend considering deactivation of cardiac implantable electronic devices (CIEDs) in patients nearing death. We evaluated the implementation of this recommendation in unselected deceased individuals with CIEDs.
Methods: Over a 7-month period in 2016, all deceased persons taken to the Rostock crematorium were prospectively screened for CIEDs and these were interrogated in situ. Pacing rate, pacing mode, and lead output were documented as well as patient data including location and time of death. In implantable cardioverter-defibrillators (ICDs), tachycardia therapy adjustment and occurrence of shocks 24 h prior to death were also recorded.
Results: We examined 2297 subjects, of whom 154 (6.7%) had CIEDs. Of these subjects, 125 (100%) pacemakers (PMs) and 27 (96.4%) ICDs were eligible for analysis. Death in persons with ICDs occurred most frequently in hospital (55.6%), while this was less frequently the case for individuals with PMs (43.2%). Furthermore, 33.3% of subjects with ICDs and 18.5% with PMs died in palliative care units (PCU). Shock therapies were switched off in three (60%) individuals with ICDs who died in the PCU, whereas antibradycardia therapy was not withdrawn in any PM patient in the PCU. Therapy withdrawal occurred in two patients with PMs (1.3%) who died in hospital. Patients with PMs had high ventricular pacing rates at the last interrogation (69 ± 36.0%) and often suffered atrioventricular block (39.2%). Six (25%) of the 24 active ICDs presented shocks near the time of death.
Conclusion: Many CIED patients died in hospital; nonetheless, in practice, CIED deactivation near death is rarely performed and might be less feasible in subjects with PMs. However, there is still a need to consider deactivation, especially in individuals with ICDs, as one fourth of them received at least one shock within 24 h prior to death.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
OBJECTIVES: Although the experiences of family members who care for relatives at the end of life have been researched extensively, little is known about the needs and experiences of families caring for hospice patients with pacemakers.
AIM: To better understand the experiences of family caregivers of a terminally ill patient who received hospice care at home and chose deactivation of a pacemaker.
DESIGN: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis focusing on form and content was chosen to analyze the data.
PARTICIPANTS: Five bereaved caregivers from the Midwestern United States who provided care and participated in the deactivation of their family member's pacemaker.
RESULTS: Four storylines that described, gave meaning to, and contextualized the caregivers' experiences were identified: "I am done. I am not doing it anymore"; "Whatever you decide, I'll support you"; "It is really difficult to watch, but you want to be there"; and "I will not have part of this." Caregivers struggled with lack of support, understanding, and acceptance from medical providers when their family member decided to have her pacemaker deactivated, and they believed that the hospice model of care was appropriate to support and help them in that process.
CONCLUSIONS: This research aids in understanding the ramifications of family-provided end-of-life care to a patient whose pacemaker has been deactivated. This can help to increase hospice clinicians' knowledge regarding caregivers' experiences facing deactivation of a pacemaker, before and after the patient's death.
Over the past 2 decades, the discipline of palliative care has evolved and expanded such that it is now the standard of care for a variety of acute and chronic processes. Although there are recommendations encouraging incorporation of palliative care into the routine management of patients with chronic cardiac processes, such as congestive heart failure, implementation has been challenging, and nowhere more so than in the cardiac surgical population. However, as the boundaries of surgical care have expanded to include progressively more complex cases, increasing attention has been given to the integration of palliative care into their management. In this review article, the authors describe the existing evidence for palliative care team involvement in patients with non-operative and surgical cardiac diseases and examine future directions for growth in this field.
Palliative care (PC) teams are primed to support patients with advanced illness, including patients with mechanical circulatory support (MCS), and are increasingly being called upon to help care for these patients. Detailed guidelines for PC engagement are lacking despite key stakeholders' endorsements of collaboration. PC should encompass the decision-making period, the duration of therapy, and end-of-life care. PC teams can assist with symptom management, advance care planning, and communication across the continuum of MCS care. However, the current state of MCS and PC collaboration is variable and can be hindered by staffing challenges and clinician discomfort. To best care for patients who receive advanced cardiopulmonary life-sustaining therapies, meaningful engagement of PC during all phases of MCS is essential.
Decision making on behalf of an incapacitated patient is challenging, particularly in the context of venoarterial extracorporeal membrane oxygenation (VA-ECMO), a medically complex, high-risk, and costly intervention that provides cardiopulmonary support. In the absence of a surrogate and an advance directive, the clinical team must make decisions for such patients. Because states vary in terms of which decisions clinicians can make, particularly at the end of life, the legal landscape is complicated. This commentary on a case of withdrawal of VA-ECMO in an unrepresented patient discusses Extracorporeal Life Support Organization guidelines for decision making, emphasizing the importance of proportionality in a benefits-to-burdens analysis.
Importance: Use of palliative care (PC) for patients with cardiovascular disease (CVD) has increased recently. However, it is unknown if patients are receiving earlier referrals to PC.
Objective: To assess characteristics and trends of patients with CVD referred to PC.
Design, Setting, and Participants: Cohort study in which analysis of data from the multicenter Quality Data Collection Tool for Palliative Care registry from January 2, 2015, through December 29, 2017, included patients with CVD 18 years or older referred to initial PC consultation who had a documented palliative performance score (PPS) .
Exposures: Patients with CVD who presented for an initial PC visit.
Main Outcomes and Measures: The primary outcome was PPS. Secondary outcomes included symptoms and end-of-life documentation.
Results: Among 1801 patients (mean [SD] age, 77.7 [13.7] years) from 16 sites in the analysis, 875 (48.6%) were women and 1339 (74.3%) were white. A low PPS score (0%-30%), consistent with bedbound status, was recorded for 521 patients (28.9%), with no change through time. The most common moderate to severe symptoms were poor well-being, tiredness, anorexia, and dyspnea. Year of encounter was associated with improved symptoms of pain (odds ratio, 1.25; 95% CI, 1.05-1.50) and with constipation (odds ratio, 1.32; 95% CI, 1.03-1.69). No change through time was noted in other symptoms or end-of-life documentation. Although the proportion of referrals from general medicine increased from 43.2% (167 of 387) in 2015 to 52.9% (410 of 775) in 2017, the proportion of referrals from cardiologists decreased from 16.5% (64 of 387) in 2015 to 10.5% (81 of 775) in 2017. The proportion of patients referred to PC who were black decreased from 11.9% (46 of 387) in 2015 to 6.3% (49 of 775) in 2017. While 69.5% of all patients with CVD (1252 of 1801) had a primary diagnosis of heart failure, the proportion of non-heart failure CVD diagnoses, such as coronary artery disease and valvular heart disease, increased from 25.6% (99 of 387) in 2015 to 30.1% (233 of 775) in 2017.
Conclusions and Relevance: Patients with CVD demonstrated significant symptom burden, and there was no evidence in the registry of change in the PPSs of patients with CVD referred to PC through time. Cardiologists provided comparatively fewer referrals to PC for patients with CVD, and this proportion decreased through time. The proportion of racial and ethnic minorities referred to PC was small and decreased through time. These findings reinforce the need for cardiologists to be more engaged with PC and consider referring appropriate patients with CVD sooner.
OBJECTIVES: Incident depression, occurring after an acute coronary syndrome (ACS) in never depressed patients, exerts a negative effect on the cardiac prognosis. Nonetheless only a few studies have evaluated the risk factor for incident depression and, particularly, no study have investigated the role of personality disorders. Therefore, the aim of this study is to verify if personality disorders represent a risk for incident depression in patients at their first ACS.
METHOD: The study sample was selected among never depressed patients who were consecutively admitted to the Coronary Intensive Care Unit, from January 2009 to March 2012, for the first ACS. The study sample included 262 patients. The presence of depressive disorder was assessed with the Primary Care Evaluation of Mental Disorders (DSM-IV criteria), whereas its severity was evaluated with the Hospital Anxiety and Depression Scale. Evaluations were collected at baseline and at 1, 2, 4, 6, 9, 12 and 24 months of follow-up. Moreover, at baseline personality disorders were investigated with the Structured Clinical Interview for DSM-IV Axis II disorders.
RESULTS: Out of 262 subjects, a depressive disorder was diagnosed in 56 patients (21%). At baseline risk factors for incident depression were being widowed, having a distress reaction and narcissistic personality traits.
CONCLUSION: Clinicians should keep in mind these characteristics when facing patients at their first ACS, given the detrimental effect of depression on cardiac prognosis. A psychological support should prevent the onset of incident depression in these patients.
BACKGROUND: Guidelines for device-based therapy of cardiac rhythm abnormalities were updated in 2008 including discussions prior to implantation with implantable cardioverter defibrillator (ICD) recipients regarding end-of-life (EOL) choices.
OBJECTIVES: To explore patients' knowledge of the function of the ICD at EOL.
METHODS: ICD recipients from Central Kentucky and Melbourne, Australia completed the Experiences, Attitudes, and Knowledge of EOL.
RESULTS: Of the 240 ICD recipients, 76% reported that they have never had discussions with their health care provider regarding the withdrawal of defibrillation therapy. A total of 38% believed that turning off the ICD shocks was the same as active euthanasia and that disabling defibrillation therapy required surgical intervention; 37% believed that once defibrillation was disabled, it could not be enabled again.
CONCLUSIONS: Adherence to guidelines regarding EOL discussions with ICD recipients was minimal from the patients' perspective. Most patients may hold alarming misperceptions that could interfere with optimal EOL care.
There are more adults than children living with congenital heart disease (CHD) due to improvements in surgical and medical CHD management today. In 2011, though, fewer than 30% of adult CHD patients were following up with specialized providers. An ineffective transition from pediatric to adult-focused medical care can result in lapses in CHD medical care, patient noncompliance, and increased risk of late complications. Early involvement of a palliative care team offers development of autonomy, identification of potential barriers to care, and support for patient and family that may improve transition success and quality of life in CHD patients.
A 14-year-old girl with a history of complex congenital heart disease in end-stage heart failure and with cyclic vomiting was admitted to our hospice program in 2012. Before hospice enrollment, she had required intermittent infusions of dexmedetomidine to abort cyclic vomiting episodes after cardiac catheterization procedures. Following a hospital admission in November 2013, she was discharged home in the care of our hospice on a continuous dexmedetomidine infusion. She remained on this infusion at varying doses (range of 0.1-0.38 mcg/kg/hour) for nearly three years, until her death in September 2016. This report describes the palliative use of dexmedetomidine in this patient and difficulties related to the use of this medication during the course of her care.
This paper reports on a study that examined the grief and coping of 29 parents whose child has hypoplastic left heart syndrome using the Dual Process Model. The study employed a secondary thematic analysis of interviews at key times of treatment and recovery for the child. After the diagnosis, parents experienced intense loss (LO), but focused upon restoration-orientated tasks (RO) to support their child. Over time, most parents employed a healthy oscillation between LO coping and RO coping, with waves of grief and with some grieving suppressed. There are some specific grief and coping and gender patterns employed by parents.
OBJECTIVES: Cardiac rehabilitation (CR) programmes are standard of care for patients following a coronary event. While such exercise-based secondary prevention programme do offer benefits, they are used by less than 30% of eligible patients and attrition within these programmes is high. This project is a nested qualitative assessment of a pilot programme considering Tai Chi (TC) as an alternative to CR. We hypothesised that TC may overcome several key barriers to CR.
METHODS: A semistructured focus group agenda was used to assess three key domains of feasibility: (1) patients' experiences, (2) reasons/barriers for not having attended CR and (3) any improvements in physical activity and other secondary outcomes (quality of life, weight, sleep). A thematic analysis was used to better understand the key concepts.
RESULTS: This high-risk group of patients reported that they enjoyed TC exercise, and felt confident and safe doing it. TC practice was reported to support other types of physical activity allowing for a generalisation of positive effects.
DISCUSSION: This analysis is consistent with published reports of TC practice improving mood and psychological well-being. Qualitative methods allowed us to find emergent experiential reports of behaviour change factors found in established behaviour change theories.
Use of an implantable cardioverter defibrillator (ICD) is an established therapy for the prevention of sudden cardiac death. However, at the end of life, these devices can prolong the dying experience, causing physical and psychological trauma. Patients are often unaware of their options regarding ICD management at the end of their life, which highlights the need for health professionals to have these discussions with patients. This study aimed to identify patients' knowledge and opinions about their ICD and the factors influencing their knowledge and opinions. Of the 30 participants in this study, 59% had sufficient knowledge about ICDs. There was no relationship between knowledge and time since implantation (p=0.11). A relationship existed between knowledge and age; those that were older were better informed (p=0.008). The authors conclude that patient education and communication are essential for patients with ICDs to enhance decision-making about ICD management at the end of life.