Communicating with parents of children with trisomy 13 or 18 who seek cardiac interventions

Weaver, Meaghann S.; Lantos, John D.; Hauschild, Kelly; Hammel, James M.; Birge, Nicole; Janvier, Annie

doi:10.1017/s1047951120004023

Cited by 5 publications

(2 citation statements)

References 27 publications

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“…Instead, doctors and other health professionals must help and support families in decisions about whether to pursue surgery with the inclusion of palliative care. 22…”

Section: Evolving Approach To Infants With Trisomy 13 and 18mentioning

confidence: 99%

Cardiac Interventions for Patients With Trisomy 13 and Trisomy 18: Experience, Ethical Issues, Communication, and the Case for Individualized Family-Centered Care

Cleary

Janvier

Farlow

et al. 2021

World J Pediatr Congenit Heart Surg

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This report is informed by the themes of the session Trisomy 13/18, Exploring the Changing Landscape of Interventions at NeoHeart 2020—The Fifth International Conference of the Neonatal Heart Society. The faculty reviewed the present evidence in the management of patients and the support of families in the setting of trisomy 13 and trisomy 18 with congenital heart disease. Until recently medical professionals were taught that T13 and 18 were “lethal conditions” that were “incompatible with life” for which measures to prolong life are therefore ethically questionable and likely futile. While the medical literature painted one picture, family support groups shared stories of the long-term survival of children who displayed happiness and brought joy along with challenges to families. Data generated from such care shows that surgery can, in some cases, prolong survival and increase the likelihood of time at home. The authors caution against a change from never performing heart surgery to always—we suggest that the pendulum of intervention find a balanced position where all therapies including comfort care and surgery can be reviewed. Families and clinicians should typically be supported and empowered to define the best care for their children and patients. Key concepts in communication and case vignettes are reviewed including the importance of supportive relationships and the fact that palliative care may serve as an additional layer of support for decision-making and quality of life interventions. While cardiac surgery may be beneficial in some cases, surgery should not be the primary focus of initial family education and support.

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“…Instead, doctors and other health professionals must help and support families in decisions about whether to pursue surgery with the inclusion of palliative care. 22…”

Section: Evolving Approach To Infants With Trisomy 13 and 18mentioning

confidence: 99%

Cardiac Interventions for Patients With Trisomy 13 and Trisomy 18: Experience, Ethical Issues, Communication, and the Case for Individualized Family-Centered Care

Cleary

Janvier

Farlow

et al. 2021

World J Pediatr Congenit Heart Surg

Self Cite

View full text Add to dashboard Cite

show abstract

“…These studies have been well powered due to utilization of large databases and registries, which standardly identify the diagnosis of T13 and T18 based on diagnostic codes across multiple centers. These newer studies have led to thoughtful investment in identifying prognostic risk factors and approaches to clearly delineate, which of these patients will be long term survivors after interventions, how to counsel parents and families, and whether interventions are reasonable (Carvajal et al, 2020;Kochan et al, 2021;Leuthner & Acharya, 2020;Neubauer & Boss, 2020;Weaver et al, 2021). We sought to better understand our local population of patients with T13 and T18 and their outcomes in order to provide more personalized counseling for our patients' families.…”

mentioning

confidence: 99%