"A Good Death": Role of Shared Decision Making and Palliative Care in Children with Cardiac Disease
Palliative Care; child; Decision Making; human; palliative therapy; shared decision making; letter; heart disease
We read with interest the article titled “A “Good Death” for Children with Cardiac Disease” by Moynihan et al. [1] The authors found that parents were less likely to perceive a “good death” when there was a lack of advanced care planning, poor pain control, surprise regarding timing of death, and cure-oriented goals of care. Further, those parents whose children had cardiopulmonary resuscitation (CPR) at end-of-life compared to those who experienced cessation of life sustaining therapies had a much higher odds of disagreeing with a “good death.”
End-of-life discussions and perceptions are challenging to decipher due to multiple reasons, including parental cultural and religious beliefs, implicit bias of medical caregivers and regulatory oversight. Often, parents may not realize the trajectory of their child’s condition until late in the clinical course, with one study showing this occurred at a median of 2 days prior to death [2]. Also, almost half of parents perceived their child suffered during the end-of-life period [2]. Therefore, honest communication about the big picture and early involvement of palliative care can improve parental understanding and expectations. Early involvement of palliative care has been shown to increase advanced care planning and reduce invasive interventions at end-of-life, including CPR and mechanical support [3]. This is outlined in the recent AHA consensus statement regarding use of palliative care across the life span of children with heart disease [4].
Tadros HJ; Gupta D
Pediatric Cardiology
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00246-023-03124-x" target="_blank" rel="noreferrer noopener">10.1007/s00246-023-03124-x</a>
The Surprise Question as a Trigger for Primary Palliative Care Interventions for Children with Advanced Heart Disease
Pediatric palliative care; Advanced care planning; Advanced heart disease; Pediatric cardiology; Prognostication; Surprise question
There is significant uncertainty in describing prognosis and a lack of reliable entry criteria for palliative care studies in children with advanced heart disease (AHD). This study evaluates the utility of the surprise question-"Would you be surprised if this child died within the next year?"-to predict one-year mortality in children with AHD and assess its utility as entry criteria for future trials. This is a prospective cohort study of physicians and nurses caring for children (1 month-19 years) with AHD hospitalized ≥ 7 days. AHD was defined as single ventricle physiology, pulmonary vein stenosis or pulmonary hypertension, or any cardiac diagnosis with signs of advanced disease. Primary physicians were asked the surprise question and medical record review was performed. Forty-nine physicians responded to the surprise question for 152 patients. Physicians responded "No, I would not be surprised if this patient died" for 54 (36%) patients, 20 (37%) of whom died within 1 year, predicting one-year mortality with 77% sensitivity, 73% specificity, 37% positive predictive value, and 94% negative predictive value. Patients who received a "No" response had an increased 1-year risk of death (hazard ratio 7.25, p < 0.001). Physician years of experience, subspecialty, and self-rated competency were not associated with the accuracy of the surprise question. The surprise question offers promise as a bedside screening tool to identify children with AHD at high risk for mortality and help physicians identify patients who may benefit from palliative care and advance care planning discussions.
Alizadeh F; Morell E; Hummel K; Wu Y; Wypij D; Matthew D; Esteso P; Moynihan K; Blume ED
Pediatric Cardiology
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00246-022-02919-8" target="_blank" rel="noreferrer noopener">10.1007/s00246-022-02919-8</a>
Palliative care?! But this child's not dying: The burgeoning partnership between pediatric cardiology and palliative care
cardiology; pediatric cardiology; pediatric palliative care
The field of pediatric cardiology has witnessed major changes over the past few decades that have considerably altered patient outcomes, including decreasing mortality rates for many previously untreatable conditions. Despite this, some pediatric cardiology programs are increasingly choosing to partner with their institutional palliative care teams. Why is this? The field of palliative care has also experienced significant shifts over a similar period of time. Today's palliative care is focused on improving quality of life, for any patient with a serious or life-threatening condition, regardless of where they might be on their disease trajectory. Research has clearly demonstrated that improved outcomes can be achieved for a variety of patient cohorts through early integration of palliative care; recent evidence suggests that the same may be true in pediatric cardiology. All pediatric cardiologists need to be aware of what pediatric palliative care has to offer their patients, especially those who are not actively dying. This manuscript reviews the evolution of palliative care and provides a rationale for its integration into the care of children with advanced heart disease. Readers will gain a sense of how and when to introduce palliative care to their families, as well as insight into what pediatric palliative care teams have to offer. Additional research is required to better delineate optimal partnership between palliative care and pediatric cardiology so that we may promote maximal quality of life of patients concurrently with continued efforts to push the boundaries of quantity of life. Copyright © 2020. Published by Elsevier Inc.
Wan A; Weingarten K; Rapoport A
The Canadian journal of cardiology
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.cjca.2020.04.041" target="_blank" rel="noreferrer noopener">10.1016/j.cjca.2020.04.041</a>
Early Integration of Palliative Care in Families of Children with Single Ventricle Congenital Heart Defects: A Quality Improvement Project to Enhance Family Support
Cardiac; Collaboration; End-of-life; Palliative; Pediatric; Single ventricle
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.
Davis J A M; Bass A; Humphrey L; Texter K; Garee A
Pediatric Cardiology
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s00246-019-02231-y" target="_blank" rel="noreferrer noopener">10.1007/s00246-019-02231-y</a>
Congenital Cardiothoracic Surgeons and Palliative Care: A National Survey Study
adolescent; adult; article; child; clinical article; female; human; hypoplastic left heart syndrome; male; medical care; palliative therapy; pediatric cardiology; perception; prenatal diagnosis; thoracic surgeon
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.
Morell E; Thompson J; Rajagopal S; Blume ED; May R
Journal of palliative care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0825859719874765" target="_blank" rel="noreferrer noopener">10.1177/0825859719874765</a>
Attitude toward and current practice of transfer and transition of adolescents with congenital heart disease in the United States of America and Europe
Child; Humans; United States; Adult; Attitude of Health Personnel; Questionnaires; Continuity of Patient Care; Europe; adolescent; Adolescent Transitions; retrospective studies; Heart Defects; Congenital/therapy; Patient Transfer/statistics & numerical data
The objective of this study was to explore the current practice and attitudes of pediatric cardiologists in the United States and Europe on the transfer and transition of children with congenital heart disease (CHD). A survey among pediatric cardiology programs in the United States and Europe was undertaken. Sixty-nine centers completed and returned the 61-item questionnaire that was specifically devised for this survey. Of 69 participating centers, 74% reported that they transfer their patients to adult-focused care. When a center transfers its patients, 80% transfer them to a formalized Adult Congenital Heart Disease Program. The median age of transfer is 18 years. Comorbidities, pregnancy, and patient/family request to leave pediatric cardiology were identified as initiators for transfer. Complexity of the heart defect was relatively less important when deciding whether to transfer patients. Only one-third of the centers that transfer their patients provide a structured preparation for patients and family. Development of a formal transition program is planned at 59% of the centers that transfer patients. In conclusion, timely transfer and a structured transition process of children with CHD are not implemented in all pediatric cardiology programs. Health-care providers working in pediatric cardiology should make their transfer policies explicit and transition programs ought to be developed.
2009
Hilderson D; Saidi AS; Van Deyk K; Verstappen A; Kovacs AH; Fernandes SM; Canobbio MM; Fleck D; Meadows A; Linstead R; Moons P
Pediatric Cardiology
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1007/s00246-009-9442-1" target="_blank" rel="noreferrer">10.1007/s00246-009-9442-1</a>
The Role Of Pediatric Palliative Care In Complex Congenital Heart Disease: Three Illustrative Cases
Congenital Heart Disease; Pediatric Cardiology; Pediatric Palliative Care
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population. OBJECTIVE: This case description reviews the role of PPC teams in the care of patients with complex CHD. DESIGN: Case study and analysis of three pediatric patients with complex CHD who also received PPC services. CONCLUSIONS: Involvement of PPC teams in patients with complex CHD can be beneficial for both families and caregivers. PPC teams can aid with advance care planning, goal setting, medical decision making, and bereavement support. Further research is needed to better quantify the benefits of PPC teams' involvement in this population.
May R; Thompson J
Journal Of Palliative Medicine
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1089/jpm.2017.0047
Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study
Cardiologist; Controlled Study; Heart Failure; Palliative Therapy; Pediatric Cardiology; Terminal Care; Cardiac Surgeon; Child; Clinical Study; Clinical Trial; Controlled Clinical Trial; Female; Human; Intensivist; Life Expectancy; Male; Medical School; Multicenter Study; Skill
While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.
Balkin E M; Kirkpatrick J N; Kaufman BD; Swetz K M; Sleeper L A; Wolfe J; Blume E D
Pediatric Cardiology.
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1007/s00246-017-1663-0