Hello my Zebras and Spoonies! Thanks for coming and hanging out with me today, I’m glad that you are here. Today I am going to be talking about Medical Autonomy and some of the ethical complexities that come with it.
Expressing respect for patients’ autonomy means acknowledging that patients who have decision-making capacity have the right to make decisions regarding their care, even when their decisions contradict their clinicians’ recommendations.
AMA Journal of Ethics
This seems like such a simple idea, but things quickly get complex when you take into account a provider’s ethical obligation to “Do no harm.” What happens when a provider and patient disagree about what’s the best option for care? What about when a patient wants treatment that the provider believes would be harmful?
The basic principle is that a provider is supposed to present their patient with all of the possible options for treatment. They are then supposed to provide education on the risks and benefits of each of those treatment options. Then they can make a recommendation for care. This isn’t how it usually plays out because providers simply are not given the time or education that they need to properly educate their patients. While doctors and nurses are clearly considered to be educators, we aren’t given education on how to do it. Thus, most of us provide education to our patients poorly simply because we’ve never been taught the best ways to approach adult learning. A short, 15 minute, office visit doesn’t leave time for the providers to do much of anything. Because of this, education is often skipped as an unessential service.
Because of all of that, what usually happens is that a provider will simply skip to making a recommendation for your care. They will tell you what they think you should do to manage your care. So, what do you do if you don’t like the option that’s being presented? Start by asking questions. Ask what other treatment options you have. Ask why this is the treatment option that the provider recommends over others. Don’t be afraid to do your own research. It isn’t usually the case that you need to make a quick decision. Be sure to take the time you need to really consider the choice being presented to you.
There is always your right to refuse the treatment options they recommend. But something to keep in mind is the providers have the right to refuse you care when they believe that the treatment will provide no benefit or will cause harm. In some cases, causing harm can mean that they believe that the risk is greater than the benefit. And this is super frustrating because it is the patient that has to live with the consequences of the decisions being made. So, why is it that it is the provider that has the final say in providing care? This comes from the belief that our medical providers are more knowledgeable about medicine and have an ethical duty to protect us from harm.
I’ll admit that I have a strange perspective on Medical Autonomy. There have been times as a nurse that the patient has asked me to provide care that I knew would be harmful. There have been times I have refused to provide that care due to the harm I believed it could cause. Yet, as a patient, I find it infinitely frustrating that a provider has the final voice on what happens in my medical care. It is my body and I am the one living within this flesh. I should be allowed to make my choices and live with the consequences of those choices. So, where should the line between Medical Autonomy and Do No Harm be? Because there is nothing but grey between those two.
One of the challenges is: How do you define harm? Harm is grey, especially when you include psychological and emotional harm. And the truth of the matter is that our bodies absolutely impact our emotional and psychological well being. The other fact is that medicine is often about choosing between the lesser of evils rather then achieving a perfect outcome. But who gets to decide which is the better of the possible outcomes? What if saving an injured leg would likely cause the person to suffer chronic pain? How would that compare to the risk of that leg being amputated causing body dysmorphia? There really isn’t a good way to sort any of that out.
Another challenge is the very real presence of bias in our health care system. All people do not receive equal care. The first major factor for that is our income bracket. Someone under the poverty line isn’t going to receive the same care as someone above the poverty line who isn’t going to receive the same care as a wealthy person. People of different ethnicities don’t receive the same health care as those who are white. Women don’t receive the same care as men. Allowing health care providers to have the final voice is allowing bias a stronger influence in medicine.
So, what does all of that mean for those of us with chronic illness as we desperately try to seek the best possible out comes and a sense of wellness in our lives?
It means that we need to continue to advocate for more autonomy. Because we have a lot more medical autonomy now then we did 100 years ago when it was standard of practice for a provider to simply decide for their patient. That increase in autonomy came from patients not accepting providers being allowed to decide for us.
It means that we need to self educate so that we can better understand what is happening with our bodies.
It means that we need to keep in mind that we always have the right to a second opinion or a third or a fourth. We must keep it always in the for front of our minds that our providers work for us. If they are not providing the level of care we need, then we should fire them and seek care else where.
Thanks for coming and spending some time with me. I hope that you all find peace and wellness. Until we talk again, you take care of yourselves!
Zebra Pig 