Palliative care and paediatric cardiology: current evidence and future directions

Morell, Emily; Moynihan, Katie; Wolfe, Joanne; Blume, Elizabeth D.

doi:10.1016/s2352-4642(19)30121-x

Cited by 29 publications

(49 citation statements)

References 82 publications

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“…42 Similarly, patients with cardiac malformations represented a very small percentage of prenatal PPC consultations in a study describing perinatal PPC referral patterns. 43 We postulate that provider uncertainty regarding disease trajectory 22,44 and concerns about parental acceptance or understanding may contribute to low referral rates in the prenatal period. 23,45 Prenatal PPC is an emerging field.…”

Section: Discussionmentioning

confidence: 99%

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Green

Bennett

Olson

et al. 2021

J Pediatr Intensive Care

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Pediatric palliative care (PPC) provides an extra layer of support for families caring for a child with complex heart disease as these patients often experience lifelong morbidities with frequent hospitalizations and risk of early mortality. PPC referral at the time of heart disease diagnosis provides early involvement in the disease trajectory, allowing PPC teams to longitudinally support patients and families with symptom management, complex medical decision-making, and advanced care planning. We analyzed 113 hospitalized pediatric patients with a primary diagnosis of heart disease and a PPC consult to identify timing of first PPC consultation in relation to diagnosis, complex chronic conditions (CCC), and death. The median age of heart disease diagnosis was 0 days with a median of two CCCs while PPC consultation did not occur until a median age of 77 days with a median of four CCCs. Median time between PPC consult and death was 33 days (interquartile range: 7–128). Death often occurred in the intensive care unit (n = 36, 67%), and the most common mode was withdrawal of life-sustaining therapies (n = 31, 57%). PPC referral often occurred in the context of medical complexity and prolonged hospitalization. Referral close to the time of heart disease diagnosis would allow patients and families to fully utilize PPC benefits that exist outside of end-of-life care and may influence the mode and location of death. PPC consultation should be considered at the time of heart disease diagnosis, especially in neonates and infants with CCCs.

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Section: Discussionmentioning

confidence: 99%

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Green

Bennett

Olson

et al. 2021

J Pediatr Intensive Care

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“…Despite technological progress in surgical and intensive medicine, severe CHDs are still associated with significant mortality; children with severe CHD who survive initial surgery still remain affected by a life‐threatening condition, with high mortality rates 1–3 . Unfortunately, many children with CHD require paediatric palliative care (PPC) and, ultimately, end‐of‐life (EoL) care 4–6 . However, to date, only scant information is available on the characteristics of children dying from CHD, the patterns of EoL care and the perspectives of their parents and health‐care providers (HCPs).…”

Section: What Is Already Known On This Topicmentioning

confidence: 99%

“…[1][2][3] Unfortunately, many children with CHD require paediatric palliative care (PPC) and, ultimately, end-of-life (EoL) care. [4][5][6] However, to date, only scant information is available on the characteristics of children dying from CHD, the patterns of EoL care and the perspectives of their parents and health-care providers (HCPs). Such information would be crucial to propose any modification to clinical practice.…”

Section: What This Paper Addsmentioning

confidence: 99%

End‐of‐life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

Agosto¹,

Benedetti

Tommasi³

et al. 2020

J Paediatrics Child Health

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Aim In complex congenital heart diseases (CHD), patients may remain affected by significant morbidity and mortality after surgery. We analysed the end‐of‐life (EoL) care in children with severe CHD who died in our institution and investigated perspectives of parents and health‐care professionals (HCPs). Methods Medical records of all children (age < 18 years old) affected by a severe CHD who died in a tertiary cardiac care centre were reviewed. Subsequently, a cross‐sectional questionnaire‐based study of parents and HCPs of children involved in the study was designed. Results In total, 30 children died (median age: 45 days; range: 15 days to 3.4 years). Of them, 97% (31/32) died in an intensive care unit setting and were intubated and sedated at EoL. A total of 77% (23/30) died without parents being present at bedside. Eighteen families and 10 HCPs were interviewed. For 61% of the parents (11/18) and 70% of the clinicians (7/10), the goal of therapy at the EoL was ‘to lessen your child's suffering as much as possible’. Overall, 44% of parents (8/18) and 50% of HCPs recognised that their child had no chance of survival ‘a few days before the child died’. Conclusions We believe that these data suggest an unconscious reluctance to change goals of care in EoL, shifting from intensive care to comfort and quality of life.

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“…[9][10][11] A recent review of the evolving incorporation of paediatric palliative care with paediatric cardiology emphasised the importance of developing interdisciplinary teams to improve the integration of palliative care into the care of children with heart disease. 12 Another study evaluated the role of postnatal paediatric palliative care for children with advanced heart disease and found that paediatric palliative care involvement at the end of life lead to goal concordant care for patients and families. 13 For families expecting a child with hypoplastic left heart syndrome, however, engaging in goals of care discussions during the prenatal period may allow them more time to learn about the structural and functional aspects of hypoplastic left heart syndrome, the treatment options available, and the longterm outcomes.…”

Section: Introductionmentioning

confidence: 99%

Provider perspective on the role of palliative care in hypoplastic left heart syndrome

et al. 2020

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Objective:Hypoplastic left heart syndrome is a single ventricle defect. While staged surgical palliative treatments have revolutionised care, patients with hypoplastic left heart syndrome continue to have significant morbidity and mortality. In 2017, the National Pediatric Cardiology Quality Improvement Collaborative recommended all single ventricle patients to receive a prenatal palliative care consult. This study aimed to elucidate provider perspectives on the implementation of prenatal palliative care consults for families expecting a child with hypoplastic left heart syndrome.Methods:An online survey was administered to obstetric and paediatric providers of relevant disciplines to assess their experience with palliative care involvement in hypoplastic left heart syndrome cases.Results:Nearly, all physicians (97%) and most registered nurses (79%) agreed that the initial palliative care consult for patients with hypoplastic left heart syndrome should occur during the prenatal period. Respondents also indicated that prenatal palliative care consults should also be offered in a variety of other CHD conditions. Participants believed positive aspects of this new referral protocol included an expanded support network for families, decreased family stress during the postnatal period, increased patient education about what to expect during the postnatal period, and continuity of care.Conclusion:Multidisciplinary healthcare professionals believe that prenatal palliative care consults provide a variety of benefits for patients and families with hypoplastic left heart syndrome. Additional, multi-centre research is necessary to evaluate whether prenatal palliative care consults should become standard of care for families expecting a child with a single ventricle defect.

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Palliative care and paediatric cardiology: current evidence and future directions

Cited by 29 publications

References 82 publications

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

Timing of Pediatric Palliative Care Consults in Hospitalized Patients with Heart Disease

End‐of‐life care for children with complex congenital heart disease: Parents' and medical care givers' perceptions

Provider perspective on the role of palliative care in hypoplastic left heart syndrome

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