The Sasha Sanction

At the start of an Alagille Syndrome care plan, considering the risks of surgery where more than one organ is defective, especially where one organ is seriously compromised as with pulmonary atresia, the family meeting should include cardiologist, gasterointerologist and palliative care service to establish parental consent for the surgical plan. Sasha enjoys the cottage in her magnificent summer of 2005 with dad, all grounded by mom's beautiful feet
The word sanction suggests authorization and consent and true consent is best achieved after consideration of all viewpoints. Understandably interdisciplinary family meetings are logistically hard to setup. As Sasha did not have an initial family meeting of the two disciplines and palliative care was introduced not at the outset and not before the second palliative surgery but when she was dying, the Sasha Sanction suggests children with complex care needs and all Alagille Syndrome children with serious liver or heart decease would benefit from an interprofessional family meeting at the start of care and before each surgery. The Sasha Sanction is a credo for some complex care plans and should be an axiom for children with Alagille Syndrome and pulmonary atresia by presenting parents with the prospects of a childhood with multiple successful surgical interventions alongside the risk of both sudden death and the least palatable outcome of a lingering death due to surgical complications.

1 comment:

  1. You already know that I absolutely agree with you.

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