For those of you who follow my posts now and again, know that I occasionally binge watch really bad Netflix shows as my way of decompressing after a stressful time. I’d heard of the medical series ‘House’ over the years, but never really watched it, and I’m a sucker for medical procedurals, no matter how far fetched or unrealistic they are, (ER, The Good Doctor, Off the Map, to name a few) so of course, I jumped at binging some ‘House’.
A few episodes in, I can’t say I’m so taken with the acting or the characters, but there was one scene that stuck in my head. It was actually a perfect example of the paradox of real informed consent in our current medical system, that so elegantly raises the question of the reality of ‘shared decision making’ between patients and doctors.
The scene begins with the resident neurologist trying to explain to the parents about the complicated medical procedure the doctor wants to perform on their son.
Resident to parents of sick child: “So we’ve confirmed that the problem is this mutated virus. The treatment for SSPE is intraventricular interferon. We plant an Omaya reservoir under the scalp, which is connected to an intraventricular catheter that delivers the antiviral directly to the—”
Parent cuts off resident by lifting up his hand, holding up the unsigned consent forms.
Parent of sick child: “You want us to consent to this? We don’t even understand what you’re talking about?”
Resident: “Well the anti viral…….Look I’m sorry. I can explain this as best I can, but the notion that you are fully going to understand your son’s treatment and make an informed decision…it’s…it’s kind of insane.”
And here is where the doctor says what, I’m sure, every doctor would really like to present at many decision-making moments with parents of their patients.
Resident: “It’s dangerous. It could kill him. You should do it.”
Because, when we look at it closely, what is true informed consent? I have been present at many invasive hospital procedures, most of them routine: epidurals, colonoscopies, minor surgeries. Before each one, the patient or guardian must sign a form that basically says they understand all the risks and possible side effects associated with the procedure, and accept the responsibility that if something goes wrong it is not the fault of the doctor or hospital, and they accept that level of risk.
But do we really understand these procedures? How many women who receive an epidural during labor can actually explain where the needle was inserted into her spinal area? What material was actually injected into her spinal fluid? What are the actual risks and the actual statistics that those risks could occur?
How many parents in the scenario above would really understand the terms and procedures that the resident was describing? Not very many. Because most of us aren’t doctors.
So what is the responsibility, then, of the system, in terms of really having patients understand risks vs. benefits? Does the system have an obligation to find a way to explain to us patients that would will really comprehend the choices in front of us. Or is it the patient’s family who must accept that they will not understand and put trust in the doctor and system to make the best decision for us in that moment? And what do we do, as family or caregivers, when we lack that trust but do not truly understand the choices in front of us.
What do you think?