Tuesday, October 7, 2008

Right to Refuse or a Ruse?

In looking at Patient Advocacy, I have begun doing some research into the "Patient's Right to Refuse" and it has been both fascinating and scary.

Is there truly a right to refuse if doing so may result in "non-compliance" or "Against Medical Advice" being noted in your chart??

For those who don't know, being labeled "non-compliant" or being noted as going A.M.A. can result in a physician's refusal to treat you down the road. If it has been documented that you have not complied with medical regimens or medical orders, this gives the docs grounds to say that they won't do surgery on you or give you other kinds of therapy because you won't be responsible enough to care for yourself and follow orders.

While this makes sense on the one hand, it worries me to know that one day I might refuse a useless and unneeded MRI only to later find myself as labeled "non-compliant" or, worse, AMA. What if I chose to not have the elective stomach surgery the docs told me they wanted me to have? Would I then be non-compliant? AMA? I can't afford to take those risks but I also can't afford to follow every medical order blindly.

Here's the crazy part--these terms, non-compliance and AMA, have no real guidelines. They are arbitrary and rest in the hands of each healthcare professional to use at their discretion.

Is the Patient's Right to Refuse a right or a ruse? Is elective surgery elective when your doctor tells you to do it? Where are the lines? Why aren't there clear guidelines for doctors to follow? Why are these potentially powerful labels so ambiguous? Isn't that dangerous for us patients? Doesn't that leave us at the mercy of personalities and moods instead of protocols and thought-out boundaries?

Please weigh in on this topic!!


Midlife Midwife said...

I think part of the problem is a good definition of "non-compliant". Is that the end stage cancer patient who declines experimental treatment? Or is that the overweight, heavy smoker, diabetic who refuses to make any lifestyle changes and to take their medications as prescribed? What about the patient who doesn't take their medications as prescribed because they can't afford them?

I always write "patient declines" rather than patient refuses. You bet I chart that a patient has been adequately counseled on the benefits of a certain medical treatment, but I am always very careful that I don't state the patient is non-compliant if they chose not to do that treatment.

It does get tricky. If crap happens (yes, a very technical medical term) there are people who will sue for malpractice, even though they were the ones who didn't follow medical advice. Unfortunately, that makes it horrible for all the rest of us, patients and doctors alike. Many providers will write "non-compliant" to cover themselves if something does go wrong.

And I have to admit, it is very frustrating when you have those patients who come in with health issues, you spend your time counseling them, getting all the prior authorization, scheduling follow up appointments, and then have that patient blow you off, no show, and don't take the medicine as prescribed. Then they come back as an emergency appointment because they feel terrible and want you to immediately fix it for them.

Personally, I don't have a problem with a patient who tells me they have weighed the options and tell me they chose not to do something. I do have a problem with the scenario above. If you have no intention of following through on medical care, tell me. Then we can discuss what you are willing to do. But if you aren't willing to even think about anything I suggest, why come to me in the first place?

From a patient perspective I have backed up family members who chose not to pursue further treatment. I have chosen myself not to accept treatment. I've helped family members decline all medical care other than palliative care at the end of life. Yes, you can get a lot of grief from providers, friends and family members for making those decisions.

In a perfect world, we would all take responsibility for our own decisions. If I chose to refuse something, I am accepting the consequences. If I chose to accept care, I also chose to accept the consequences. Unfortunately many people want the right to choose but don't want to accept the consequences. That goes for both patients and providers.

I don't know the answers to this puzzling problem. Better definitions, better counseling of providers in ethical decision making, avoiding labels, patients who are more honest about why they don't follow through, more acceptance of responsibility, tort reform for malpractice? Maybe a combination of all of the above.

Genevieve said...

those terms are filled with a whole lotta red tape and unnecessary bureaucracy in my opinion because it's as if you're damned if you do and damned if you don't. Ugh!

Midlife Midwife said...

There is an interesting dialog over on Medscape on a similar topic about when it is OK to "do nothing" in medicine.