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How Having My Patient Rights Disregarded Made Me a Better Clinician

I just came from the doctor’s office where I scheduled my fifth visit, in the span of a few weeks, which I am now learning will include an invasive, possibly painful, procedure which I was not fully informed about prior. The only reason I know this is because a friend has just alerted me. I am being informed by friends, not by my doctors, that I may not be able to return to work after the procedure due to the discomfort it may cause.

I worry this is what our medical system is becoming. A system that rushes patients in and out of appointments without honoring their rights. An otherwise healthy system driven by harmful incentives that’s turning it into a transactional system which will lead to physician burnout. Many of my colleagues work in institutions such as these, and I worry for them. I am not sure this is sustainable for patients or providers.

I have developed this worry as I have spent the last year trying to better understand an endocrine disorder which has led me to over six different providers to try to find answers. Unfortunately, I have found more questions than answers, in addition to concerns about how medicine is being practiced in some places.

I am left wondering: how can we do better? As a provider myself, am I ever engaging in any of these dynamics? What more can I and others do to change a system which does not allow providers the time to sit down and have an in-depth discussion with patients?

When I first stepped into this particular specialist’s office, the doctor threw out fancy terms and acronyms. I was impressed by the knowledge and experience in front of me. I was bombarded with so much technical information that even I, as an adult with three graduate degrees, did not fully understand. I left the appointment feeling informed and optimistic. But there is a discrepancy between what doctors think they’re communicating, and what patients hear. I didn’t even realize what the conversation was missing until weeks later.

I realize now that I didn’t provide fully informed consent because I wasn’t fully informed. To induce informed consent a provider must not only inform a patient of the nature and purpose of treatment, but also the risks and benefits of all options. The two things my appointment lacked were an in-depth discussion of the potential risks and benefits of the procedures they had proposed, as well as what my options were in terms of my care. Perhaps this provider was too busy. Perhaps she thought someone else discussed the information. Or perhaps neither, which is the problem. 

To be honest, I do not remember options being discussed during that initial conversation. I was simply told what treatment would entail as if every single patient that walks in the door is given the same treatment. And even that lacked a thorough briefing, given that no one told me that they would be expecting me to come back as many as two times per week for blood draws and invasive procedures for the unforeseeable future.

There was no shared decision-making. It wasn’t until I sat down with two good friends who were medical doctors that I received validation for my anger. My provider should have presented treatment options, they said, from least invasive to most invasive, and I should have been presented with a choice. Or, if there was only one option the doctors could offer, I should have been informed about the risks and benefits, and then had my thoughts solicited by the doctor.

I have become aware over the last few years that shared decision-making takes time, and that’s something that our medical system does not incentivize. We are reimbursed for patient hours; sometimes going an extra 15 minutes to elaborate or listen becomes a burden and it shouldn’t be that way. 

I am also aware of the privilege I bring to this situation. I was lucky that this experience was simply frustrating, and there have been no real consequences as a result. This is not always the case. I am lucky because I am White and don’t have to live with providers disregarding my pain or providing me with unequal treatment due to the color of my skin. I know providers’ unconscious biases affects quality of care; it’s true even for me as a psychologist.

All patients have the right to be informed and should be presented with a discussion of the costs and benefits of their treatment options. All patients have the right to have questions answered, the right to make their own decisions, even if they differ from what we suggest. They have a right to a second opinion. They have the right to say no. 

I am trying to use this opportunity as an avenue of growth for myself. I am left contemplating how my experience as a patient can improve my professional work, wondering if I ever engage in these behaviors myself. The bright side of this is that I am motivated to discuss these important issues with providers in training.

The downside though, is that I am also left wondering what more providers can do to bring both their expertise and humility to each encounter. To never forget the vulnerability and trust our patients bring to us.

Image by sparkstudio / Shutterstock

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