Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
Patients undergoing cardiothoracic surgery face a small but significant mortality risk. Despite this, end-of-life care specific to this population has received little attention. This article examines current literature on end-of-life care in cardiothoracic surgery and in critical care. Recommendations for management at the end of life are made based on the available evidence.
Patients with tetralogy of Fallot (TOF) have impaired pulmonary flow due to an obstructed right ventricular outflow tract (RVOT), pulmonary valve or supravalvular stenosis, or hypoplastic pulmonary arteries. In newborns, alprostadil infusion provides the patency of the arterial duct, ensuring adequate pulmonary flow. As the next stage of treatment, some children may be referred for Blalock–Taussig or central aortopulmonary anastomosis as well as Brock operation with relief of RVOT obstruction.1-3 However, in some cases, interventional procedures including balloon valvuloplasty, RVOT, or arterial duct stent implantation seem to be the best option.
There is mounting recognition that some of the most urgent problems of adult congenital heart disease (ACHD) are the prevention, diagnosis, and management of heart failure (HF). Recent expert consensus and position statements not only emphasize a specific and pressing need to tackle HF in ACHD (ACHD-HF) but also highlight the difficulty of doing so given a current sparsity of data. Some of the challenges will be addressed by this review. The authors are from 3 different centres; each centre has an established subspeciality ACHD-HF clinic and is able to provide heart transplant, multiorgan transplant, and mechanical support for patients with ACHD. Appropriate care of this complex population requires multidisciplinary ACHD-HF teams evaluate all possible treatment options. The risks and benefits of nontransplant ACHD surgery, percutaneous structural and electrophysiological intervention, and ongoing conservative management must be considered alongside those of transplant strategies. In our approach, advanced care planning and palliative care coexist with the consideration of advanced therapies. An ethos of shared decision making, guided by the patient's values and preferences, strengthens clinical care, but requires investment of time as well as skilled communication. In this review, we aim to offer practical real-world advice for managing these patients, supported by scientific data where it exists.
In the increasingly complex world of modern medicine, relationship-centered, team-based care is important in geriatric cardiology. Palliative cardiovascular care plays a central role in defining the scope and timing of medical therapies and in coordinating symptom-targeted care in line with patient wishes, values, and preferences. Palliative care addresses advance care planning, symptom relief and caregiver/family support and seeks to ameliorate all forms of suffering, including physical, psychological, and spiritual. Although palliative care grew out of the hospice movement and has traditionally been associated with care at the end of life, the current model acknowledges that palliative care can be delivered concurrent with invasive, life-prolonging interventions. As the population ages, patients with serious cardiovascular disease increasingly suffer from noncardiac, multimorbid conditions and become eligible for interventions that palliate symptoms but also prolong life. Management of implanted cardiac support devices at the end of life, whether rhythm management devices or mechanical circulatory support devices, can involve a host of complexities in decisions to deactivate, timing of deactivation and even the mechanics of deactivation. Studies on palliative care interventions have demonstrated clear improvements in quality of life and are more mixed on life prolongation and cost savings. There is and will remain a dearth of clinicians with specialist palliative care training. Therefore, cardiovascular clinicians have a role to play in provision of practical, "primary" palliative care.
PURPOSE OF REVIEW: The number of patients who die in the hospital in the Western world is high, and 20-30% of them are admitted to an ICU in the last month of life, including those in cardiac ICUs (CICUs) where invasive procedures are performed and mortality is high. Palliative consultation is provided in only a few cases. The ethical and decisional aspects associated with the advanced stages of illness are very rarely discussed.
RECENT FINDINGS: The epidemiological and clinical landscape of CICUs has changed in the last decade; the incidence of acute coronary syndromes has decreased, whereas noncardiovascular diseases, comorbidities, the patients' age and clinical and therapeutic complexity have increased. The use of advanced and invasive treatments, such as mechanical ventilation, mechanical circulatory support and renal replacement therapies, has increased. This evolution increases the possibility of developing a life-threatening clinical event.
SUMMARY: This review aimed to analyze the main epidemiological, clinical, ethical and training aspects that can facilitate the introduction of supportive/palliative care programs in the CICU to improve symptom management during the advanced/terminal stages of illness, and address such issues as advance care planning, withdrawing/withholding life-sustaining treatments, deactivation of implantable defibrillators and palliative sedation.
BACKGROUND: Total Anomalous Pulmonary Venous Connection (TAPVC) is a rare heterogeneous condition That accounting for 1.5-3% of congenital heart diseases. It is characterized by failure of the Pulmonary Venous Confluence (PVC) to be directly connected to the left atrium in combination with a persistent splanchnic connection to the systemic venous circulation. The most critical status occurs when it is accompanied by pulmonary venous obstruction. Managing of this situation is very difficult and in fact, pulmonary venous obstruction is usually lethal. The real aim of this study is offering a new palliative surgical technique (Sarmast - Takriti Shunt) in order to alleviate the patient's signs and symptoms until becomes ready for the main surgical correction.
CASE PRESENTATION: The study included a 4-day old, low birth weight boy who suffered from Critical Obstructive Total Anomalous Pulmonary Venous Connection. The decision was made to perform the new palliative technique using Gore - Tex (ePTFE). Anastomosis was established without Cardiopulmonary Bypass (CPB) between Pulmonary Venous Confluence (PVC) and the left atrial appendage. Therefore the Sarmast - Takriti Shunt (STS) was taken place.
CONCLUSION: After completion of the procedure, the pressure gradient across the venous confluence and the Left innominate vein became zero. Cyanosis, agitation and feeding Problem subsided. Three days later, when he was discharged, arterial oxygen saturation had reached as high as 91%. After 7 months we perfomed the main correction.
Background: ST-segment elevation myocardial infarction complicated with cardiogenic shock (STEMI-CS) is associated with high mortality but the trends of utilization and predictors of palliative care (PC) referral in this population have not been well described.
Objectives: To investigate the utilization trends and predictors of PC referral in STEMI-CS.
Methods: Nationwide inpatient sample from 2005–2014 was queried to identify patients with STEMI-CS of age =18. PC referral was identified International Classification of Diseases, Ninth Edition Clinical Modification, V66.7.
Results: A total of 33,294 admissions were identified and 1,878 (5.6%) had PC encounter. PC referral group were older and had higher comorbidities. PC consultation increased approximately 10 times over the study period in those who died (from 2.3% to 27.4%) and in those who survived (from 0.21% to 2.83%). In multivariable analysis, age, higher Exlixhauser score, no revascularization, teaching hospital, large bed hospital, mechanical circulatory support use, and lower income status were associated with increased PC referral whereas coronary artery bypass graft was associated with lower PC referral rates. Patients under PC group were more often discharged to an extended care facility and less likely discharged home.
Conclusion: PC utilization increased substantially during the 10-years study period in the United States in STEMI-CS. Several baseline, procedural, hospital, and socioeconomic factors were associated with PC referral in the setting STEMI-CS.
Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
Heart failure (HF) is a progressive condition with high mortality and heavy symptom burden. Despite guideline recommendations, cardiologists refer to palliative care at rates much lower than other specialties and very late in the course of the disease, often in the final 3 days of life. One reason for delayed referral is that prognostication is challenging in patients with HF, making it unclear when and how the limited resources of specialist palliative care will be most beneficial. It might be more prudent to consider palliative care referrals at critical moments in the trajectory of patients with HF. These include: a) the development of poor prognostic signs in the outpatient setting; b) hospitalization or intensive care unit admission, and c) at the time of evaluation for certain procedures, such as left ventricular assist device placement and ablation for refractory ventricular arrhythmias, among others. In this review, we also summarize the results of clinical trials evaluating palliative interventions in these settings.
BACKGROUND: Authors of expert guidelines and consensus statements recommend that decisions at the end-of-life (EOL) be discussed before and after implantation of an implantable cardioverter defibrillator (ICD) and include promotion of shared decision-making. The purpose of this study was to describe experiences, attitudes, and knowledge about the ICD at EOL in ICD recipients and to compare experiences, attitudes, and knowledge in ICD recipients with and without heart failure (HF). We further sought to determine factors associated with having discussions about EOL.
METHODS AND RESULTS: Using a national registry in Sweden of all ICD recipients (n=5355) in 2012, an EOL questionnaire, along with other ICD-related measures, was completed by 2403 ICD recipients. Of the participants, 1275 (n=53%) had HF. Their responses in the knowledge, experience, and attitude domains were almost identical to those without HF. Forty percent of patients with and without HF did not want to discuss their illness trajectory or deactivation of their ICD ever. In logistic regression analyses, we found that having had an ICD shock (OR, 2.05; CI, 1.64-2.56), having high levels of anxiety (OR, 1.41; CI, 1.04-1.92), and having high levels of ICD concerns (OR, 1.53; CI, 1.22-1.92) were the only significant predictors of having discussions with providers about EOL scenarios (P<0.001 for full model).
CONCLUSIONS: HF was not a predictor of having an EOL conversation. Further research is needed to determine if attitudes related to not wanting to discuss EOL interfere with good quality of life and of death, or if shared decision-making should be encouraged in these individuals.
Cardiovascular disease (CVD) is the leading cause of death globally and medical advances have changed why, when and how patients with CVD die. However, little is known about where patients with CVD die.
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Background: When left ventricular assist device (LVAD) therapy no longer is able to achieve patients' desired quality of life, withdrawal of LVAD therapy (WLVAD) may be requested.
Objectives: To evaluate factors associated with WLVAD, including the time taken before WLVAD.
Setting/Subjects: Sixty-two patients who newly underwent initial LVAD therapy during January 1, 2010 and October 30, 2018 and subsequently underwent WLVAD by December 31, 2018 were divided into those who participated in the decision of WLVAD (defined as PT+, n = 14), and those who could not participate in the decision because of the medical reasons (defined as PT-, n = 48).
easurements: Time to WLVAD in PT+ and PT- was defined as WD_PT+ (days between patients' request and WLVAD) and WD_PT- (days between when patients became unable to express themselves and WLVAD), respectively. Circumstances around WLVAD, including location of death and use of palliative care (PC), were reviewed.
Results: Mean age at WLVAD was 65.4 ± 10.1 years and 52 (83.9%) were men. Median days on LVAD support was 166.5 days (interquartile range = 838). The majority of WLVAD occurred in the intensive care unit (ICU) (83.6%) but less frequent in PT+ than in PT- (64.3% vs. 89.4%, p = 0.041). The median number of PC visits in the last month was higher in PT+ than in PT- (4.5 vs. 0.5, p = 0.005). The median WD_PT+ was 5.5 days and was significantly shorter in the ICU (1 day vs. 46 days, p = 0.013). The median WD_PT- was 5.5 days and tended to be shorter in the ICU (4 days vs. 13 days, p = 0.072). A multivariate analysis showed that male gender and ICU setting were both negatively associated with WD_PT- (p = 0.025 for men, p = 0.005 for ICU setting).
Conclusions: The majority of WLVAD occurred in the ICU and required PC involvement. Time to WLVAD was shorter in the ICU. Requests for WLVAD directly made by patients, especially in a non-ICU setting, seemed to have posed more difficulty.
BACKGROUND: The majority of children with advanced heart disease in the inpatient setting die in an intensive care unit under 1 year of age following multiple interventions. While pediatric cardiology and palliative care provider attitudes have been described, little is known about pediatric cardiothoracic surgeon attitudes toward palliative care in children with advanced heart disease.
OBJECTIVE: To describe perspectives of pediatric cardiothoracic surgeons regarding palliative care in pediatric heart disease.
DESIGN: Cross-sectional web-based national survey.
RESULTS: Of the 220 surgeons who were e-mailed the survey, 36 opened the survey and 5 did not meet inclusion criteria (n = 31). Median years of practice was 23.5 (range: 12-41 years), and 87.1% were male. Almost all (90%) reported that they had experience consulting palliative care. While 68% felt palliative care consultation was initiated at the appropriate time, 29% felt it occurred too late. When asked the appropriate timing for palliative care consultation in hypoplastic left heart syndrome, 45% selected "at time of prenatal diagnosis" and 30% selected "when surgical and transcatheter options have been exhausted." Common barriers to palliative care involvement included the perception of "giving up" (40%) and concern for undermining parental hope (36%).
CONCLUSIONS: While a majority of pediatric cardiothoracic surgeons are familiar with palliative care, there is variation in perception of appropriate timing of consultation. Significant barriers to consultation still exist, including concern that parents will think they are "giving" up, undermining parental hope, and influence of palliative care on the medical care team's approach.
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and end-of-life decision-making preferences.
AIM: (1) To examine adolescent/young adult decision-making involvement specific to heart transplant listing, and (2) to characterize their preferences specific to medical and end-of-life decision making.
DESIGN: This cross-sectional research study utilized survey methods. Data were collected from October 2016 to March 2018.
SETTING/PARTICIPANTS: Twelve adolescent and young adult patients listed for heart transplant (ages = 12-19 years) and one parent for each were enrolled at a single-center, US children's hospital.
RESULTS: Consistent with their preferences, the majority of adolescent/young adult participants (82%) perceived a high level of involvement in the decision to be listed for transplant. Patient involvement in this decision was primarily by way of seeking advice or information from their parents and being asked to express their opinion from parents. Despite a preference among patients to discuss their prognosis and be involved in end-of-life decision making if seriously ill, only 42% of patients had discussed their end-of-life wishes with anyone. Few parents recounted having such discussions. Preferences regarding the timing and nature of end-of-life decision-making discussions varied.
CONCLUSIONS: Although young people are involved in the decision to pursue heart transplantation, little attention is paid to involving them in discussions regarding end-of-life decision making in a manner that is consistent with individual preferences.
OBJECTIVE: Implantable cardioverter defibrillators can treat life-threatening arrhythmias, but may negatively influence the last phase of life if not deactivated. Advance care planning conversations can prepare patients for future decision-making about implantable cardioverter defibrillator deactivation. This study aimed at gaining insight in the experiences of patients with advance care planning conversations about implantable cardioverter defibrillator deactivation.
METHODS: In this qualitative study, we held five focus groups with 41 patients in total. Focus groups were audio-recorded and transcribed. Transcripts were analysed thematically, using the constant comparative method, whereby themes emerging from the data are compared with previously emerged themes.
RESULTS: Most patients could imagine deciding to have their implantable cardioverter defibrillator deactivated, for instance because the benefits of an active device no longer outweigh the harm of unwanted shocks, when having another life-limiting illness, or when relatives would think this would be in their best interest. Some patients expressed a need for advance care planning conversations with a healthcare professional about deactivation, but few had had these. Others did not, saying they solely focused on living. Some patients were hesitant to record their preferences about deactivation in advance care directives, because they were unsure whether their current preferences would reflect future preferences.
CONCLUSIONS: Although patients expressed a need for more information, advance care planning conversations about implantable cardioverter defibrillator deactivation seemed to be uncommon. Deactivation should be more frequently addressed by healthcare professionals, tailored to the disease stage of the patient and readiness to discuss this topic.
When should doctors seek protective custody to override a parent's refusal of potentially lifesaving treatment for their child? The answer to this question seemingly has different answers for different subspecialties of pediatrics. This paper specifically looks at different thresholds for physicians overriding parental refusals of life-sustaining treatment between neonatology, cardiology, and oncology. The threshold for mandating treatment of premature babies seems to be a survival rate of 25-50%. This is not the case when the treatment in question is open heart surgery for a child with congenital heart disease. Most cardiologists would not pursue legal action when parents refuse treatment, unless the anticipated survival rate after surgery is above 90%. In pediatric oncology, there are case reports of physicians requesting and obtaining protective custody for cancer treatment when the reported mortality rates are 40-50%. Such differences might be attributed to differences in care, a reasonable prioritization of quality of life over survival, or the role uncertainty plays on prognoses, especially for the extremely young. Nonetheless, other, non-medical factors may have a significant effect on inconsistencies in care across these pediatric subspecialties and require further examinations.
As a cardiologist specializing in advanced heart failure and transplantation, I have saved lives and witnessed plenty of tragedy. The faces of the patients I have lost stay with me far longer than those of the patients I have saved. For years I lay awake at night grieving the losses, but this grief has nowhere to go. Loved ones may move through Elisabeth Kübler-Ross' stages of grief—from denial to anger to bargaining to sadness and, finally, to acceptance—but what is the trajectory of a doctor's grief?
Cardiovascular (CV) diseases are the most common causes of death and causes frequent hospital admissions. The increase in life expectancy and the appearance of new treatments is changing in the clinical profile of CV disease, with a rise in chronic processes and concomitant comorbidities. These changes are probably reflected in the current profile of patients admitted to cardiology departments, and in their causes of mortality.
Objectives: Decision-making processes concerning end-of-life decisions are not well understood for patients admitted into stroke units with severe stroke. To assess the influence of nurses on the medical perspectives and approaches that lead to withholding and/or withdrawing treatments related to end-of-life (EOL) decisions.
Patients and methods: This secondary analysis nested within the TELOS French national survey was based on a physicians' self-report questionnaire and on a I-Score which was linked to nurses' involvement. Physician's responses were evaluated to assess the potential influence of nurse's involvement on physician's choices during an end-of-life decision.
Results: Among the 120 questionnaires analyzed, end-of-life decisions were more often made during a round-table discussion (58% vs. 35%, p = 0.004) when physicians declare to involve nurses in the decision process. Neurologists involved with nurses in decision making were more likely to withhold a treatment (98% vs. 88%, p = 0.04), to withdraw artificial feeding and hydration (59% vs. 39%, p = 0.04), and more frequently prescribed analgesics and hypnotics at a potentially lethal dose (70% vs. 48%, p = 0.03).
Conclusion: The involvement of nurses during end-of-life decisions for patients with acute stroke in stroke units seemed to influence neurologists' intensivist practices and behaviors. Nurses supported the physicians' decisions related to forgoing life sustaining treatment for patients with acute stroke and may positively impact on the family's choice to participate in end-of-life decisions.