Wednesday, January 23, 2013

Is there really such a thing as patient autonomy?

Is there really such a thing as patient autonomy?  You know, that's that thing where you, as the patient, get to make medical decisions for yourself.  Chances are, that while you may think you're choosing your own course through life, this may not be true as far as your health is concerned.

To further this discussion, let's allow for a few definitinos:

1.  Autonomy:  independence or freedom, as of the will or one's actions: the autonomy of the individual.(From Dictionary.com)

2.  PatientAutonomy:  The patient is allowed the freedom to make the best medical decision based on the best available information about all possible options.  The desire of caregivers to treat the patient as an individual person

Yet the truth is, there really is no such thing as patient autonomy.  The reality is the following:

3.  Real Patient Autonomy:  The patient is lead down a certain path, given one or two options, and lead to believe he made the best decision on his own.  Most people are naive about medical options and trust their physician to make the right choice for them.

I see examples of real patient autonomy on a daily basis at my work.  I walked into a room and the patient said to me:  "I don't think those breathing treatments do me any good, and I don't want them anymore."  I said, "That's fine.  They're meant to treat symptoms you no longer have, so you can refuse if you want."

As I was leaving the room the doctor walked in, and the patient said, "You can discontinue the breathing treatments if you want, because I don't need them."  The doctor said, "You need those treatments so everything else works better."  The patient said, "Oh, Okay."

So here you have to doctor ignoring the wishes of the patient and convincing him based on a statement that was completely not true.  Yet the medically naive (and other wise highly intelligent) patient had no way of knowing this, and so he bought into the physicians logic.

Perhaps better examples come at end of life care.  Here you have people who maybe even have advanced directives, yet because of the ethics of end of life care, the wishes of the patient are often overruled by the physician.

I have seen several younger patients who had DNR orders who were ultimately intubated and put on a ventilator because "The person was only 42 and too young to be a DRN."

I have seen a DNR patient put on a BiPAP machine, and even though the patient did not like nor want to be on the BiPAP, the doctor ordered:  "Do not take the mask off the patient no matter what."
Then you have the DNR patient who does not want to die but also wants to die comfortably.  This is where it gets really touchy.  This is where end of life ethics really comes under fire.  The patient doesn't want life saving efforts, but is gasping for air, cyanotic, and his lungs are full of secretions to the nipple line.

Does the doctor follow the wishes of the patient and do nothing, or does he treat the symptoms with BiPAP?  So now the doctor orders for the BiPAP, and it works so good the patient is awake and alert and insisting the mask comes off.  So you take the patient off the BiPAP and he can't breathe off of it.  So now what do you do?  ( I wrote about this here.) You have no choice but to put the patient back on.  Once again, the patient thinks it was his decision.

The patient's autonomy takes a back seat here.  Now consider the comfort of the patient.  Say the patient wants to be a DNR under comfort care only?  In other words, the patient has already accepted the futility of his disease.  Does being on the BiPAP make the end of life more comfortable, or does being on the BiPAP delay the inevitable?  Is the order for BiPAP complying with the wishes of the patient, or trumping the wishes of the patient?

In this sense, the patient isn't really making any decision, he is simply being lead in one direction and made to think he decided what was best for him.  Yet once the patient makes the decision to accept BiPAP (something most patients don't understand until they try it) it's difficult for a doctor to order for it to be discontinued so the patient can either sail without it or die.

Yeah.  You can debate such end of life medical ethics until you're blue in the face and there is no right or wrong answer.  That's why I think it's important for patients to be well educated about their medical conditions and end of life options.

Or, as one of my coworkers defined recently:

4.  Do not resuscitate:  I want to live, but I understand the futility of my medical condition, and I don't want you to make rescue efforts to save me if I stop breathing or if my heart stops.

5.  Do not intubate:  Load me up with medicine, do chest compressions on me, but, by God, do not you dare put a tube in my throat so I can breathe.

Related readings and references:

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