23 March 2016

Palliative care: calling a spade a spade

It's okay to choose palliative care. There, I've said it. It is okay to choose not to pursue full interventions for your child with trisomy. It's okay to have limits. Your limits may not be my limits; I even think there are ethical questions about failing to offer some interventions, but I also think that parents generally should have the right to act in whatever they perceive to be their child's best interests, and when there are no clear-cut, evidence-based answers as to what is in a child's best interests, I think parental choice should be deferred to. So it is okay to choose palliative care.

Most (although not all) parents of children with trisomy 18 will at some point choose not to pursue further intervention. At the end of Rumer's life, we made the decision that, to a high degree of probability, pursuing further intervention would have caused her suffering for no benefit. We chose palliative care. Was it the right decision? At this point in time, I am not sure. At the time we made it, I felt it was right. I mostly still think it was right, but it's possible that with more information, we may come to wish we had made a different decision. However, we own that decision. We chose palliative care. At that point, at that time, in that situation, we chose palliative care.

And that is what this post is about. Owning decisions. You may decide you don't want to pursue many, or even any interventions for your child with trisomy. There are even doctors out there who will agree with a decision not to insert an NG tube and to allow a child to only take whatever nutrition they can gain from breast or bottle, effectively permitting starvation. You may opt for no oxygen and no resuscitation and choose to allow your newborn to die in your arms, or you may just choose to avoid ventilation. Whatever your decision is: own it, you made it. For whatever reason, you made it. Do not pretend there was no other decision. There is almost always another decision.

When you pretend that palliative care is full intervention; when you say, "We did everything we could"; when you say your baby died of trisomy 18 - or, in classic doctor-speak, "her underlying condition" - you assist in creating a mythology around trisomy 18. The 'incompatible with life' and 'nothing can be done' mythology. Babies do not die of trisomy 18: they die of cardiac failure; they die of infection; they die of  pulmonary failure secondary to pulmonary hypertension. All of these problems may be 'caused' by the child's trisomy 18, but even without trisomy 18, they would still die of them without treatment, and sometimes even with treatment.

Own your decisions: say, "My baby died of cardiac failure due to VSD; we chose not to pursue surgery as we didn't feel it was right for her," or, as we say, "Our baby died of multiorgan failure of uncertain origin; we decided not to pursue further treatment as it was unlikely to benefit her." It's okay to choose palliative care. Just call it palliative care.

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