Friday, May 25, 2018

Naso: Informed Consent

I am, professionally, a purveyor of extraordinarily dangerous and unpleasant medicines.  Although they differ in mechanism of action and the nature of their side effects, the medicines I order are called chemotherapy.  They are the most dread members of the pharmacopoeia.  They have reputations  worse than the deadly, ugly, painful diseases they treat. 

Before administering these medicines, a patient must sign an "informed consent" form.  There is no way to adequately inform a patient about these ( or any other) medicines.  All medicines, from aspirin to Zolendronic acid, have a list of possible side effects that exceeds memory.  I always look them up, and even the most extensive list is incomplete..

Balancing the risk/benefit of taking these medicines is a calculation that is currently beyond the capabilities of any network of supercomputers.  It is, therefore, relegated to guess.  That guess  is stridently influenced by interested parties: payers (insurance companies) and drug manufacturing companies (who fund almost all  continuing medical education activities).  Risk/benefit maps onto profit/loss. 

Electing not to undergo treatment has a strong economic component.  The medicines and other aspects of care are extraordinarily expensive.  CAR-T cells, a newly approved treatment for lymphoma, costs one million dollars per treatment ( half for the cells, half for the transplant that is part of the procedure).  Avoiding such costs is a strong motivator. Often, that motivation is hidden from the patient.  It is not part of the informed consent.

"Prognosis" is often simplified to" hopeless", when the probability of meaningful response  is less than 10%.  The pain and suffering of choosing to continue treatment are often emphasized despite a lack of clarity regarding the probability of  pain and the difficulty communicating the nature of the pain. 

Signing the informed consent and allowing the chemotherapy to enter the body is an agnostic act of faith, a hope that the odds will be with you - but the odds are "with " no one. The odds are the  envoy of  Atheos (no Gd) 

This week's parsha contains an archetype of informed consent.  Before the suspected woman (Sota) enters into the ritual (a meal offering and trial by the ordeal of drinking dissolved ink and temple dust), she must consent, knowing that her belly may swell and her thigh wither ( it sounds like advanced ovarian cancer [a classic BRCA  association]). She can refuse the procedure ( at a price).  Or she can take her chances: Will the procedure catch her if she is guilty? Will it work as described and exonerate her of she is innocent?  One should always doubt these technical procedures. 

Some odds ( actually all odds) cannot be calculated. The truth can be approached. 

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