2 results
Provider perspective on the role of palliative care in hypoplastic left heart syndrome
- Sarah Lowenstein, Robert Macauley, Kathleen Perko, Christina Ronai
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- Journal:
- Cardiology in the Young / Volume 30 / Issue 3 / March 2020
- Published online by Cambridge University Press:
- 09 March 2020, pp. 377-382
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- Article
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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.
1 - Quality of life – and of ethics consultation – in the NICU
- Edited by Paul J. Ford, Denise M. Dudzinski
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- Book:
- Complex Ethics Consultations
- Published online:
- 03 May 2010
- Print publication:
- 26 June 2008, pp 15-21
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- Chapter
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Summary
Case narrative
One Sunday afternoon, the on-call ethicist (one of the co-authors) received a consultation request from the Neonatal Intensive Care Unit (NICU) of our 500-bed academic medical center. Two weeks earlier, a baby had been born at term with skeletal, renal, cardiac, and (most profoundly) pulmonary abnormalities but no known neurologic defects. The baby had been intubated in the delivery room and subsequently developed pulmonary hypertension, requiring high ventilator settings and inspired oxygen concentration and necessitating that the patient be chemically paralyzed.
Because the patient's abnormalities were not consistent with any defined syndrome, his long-term prognosis remained unclear – the neonatology team covering on the weekend described it as “quite bleak.” It was possible that the patient could become permanently ventilator-dependent, although it was also possible that he would eventually breathe on his own, albeit still with limb deformities and renal problems. The only certainty at that time was that the patient would require weeks to months of ventilatory support to survive.
Two days earlier, the NICU team had met with the family, and the decision was made to de-escalate the patient's level of life support by withdrawing chemical paralysis and making the patient DNR (do not resuscitate). Although mechanical ventilation was continued, most people involved in the case (including the patient's parents) did not expect the baby to survive. However, to everyone's surprise, over the next 48 hours, his respiratory condition stabilized and even improved. On Sunday afternoon, the parents requested discontinuation of mechanical ventilation.