Coercive consent isn’t real consent
We talk a lot about coercive consent in the area of sex, but less so in the medical field. Let me tell you what coercive consent looks like.
- Telling a patient that you won’t work with them if they don’t do X
- Telling a patient there are no other ways to test for X when there are (even if the testing isn’t as reliable/clear/desirable etc.
- Telling a patient they have to participate in research otherwise they’ll lose treatment
- Not being truthful about what a procedure entails
- Purposefully omitting facts about a procedure
- Gaining consent for one aspect of procedure, then changing it without gaining consent again (i.e changing surgeons, changing medicine administered)
- Guilting a patient into treatment/testing after patient has already said no (i.e “think about your family,” “you could do so much more with your life,” etc.)
Some of these things might seem harmless. In a fast-paced environment where there are more patients than doctors, conversations about informed consent can take precious time, or be forgotten about amongst the laundry list of critical tasks. The entire medical community is overworked and understaffed. It’s understandable that sometimes it’s easier to just shove a patient towards testing without a full explanation. But that lack of conversation leads patients who unquestionably trust medical professionals to undergo procedures they never wanted.
My own personal example of this was when I was nineteen and desperate for any answers. I went to the Mayo Clinic which to every doctor in my hometown, was the holy grail. It was my last resort after seeing countless specialists who couldn’t give me answers. When they were putting together my testing schedule, there were heavy implications that I had to go through with all of the testing. They said they wouldn’t be able to diagnose me without performing every test-even if those tests weren’t relevant to the symptoms I was presenting with. Therefore, when they recommended a test called an anorectal manometry, I agreed. I was told I had to do an enema prior to the procedure, however, I wasn’t informed exactly what this would entail until I was half-undressed on the table. I was surrounded by medical students who were close to my age as a balloon was inserted into my anus and I was essentially forced to shit it out into a commode in full view of everyone. While it was a standard procedure, it left me feeling disgusting and violated. I had never consented to anything being inserted inside me. It turns out there are other testing methods that could have been used, but those were never presented to me. Perhaps I should have spoken up or asked more questions, however I never felt I was in the position to do so. And because of that incident and others like it, I’m living with copious amounts of medical trauma.
Because when an illness takes over your life to the point you lose everything-your job, your education, your ability to live independently, your friends- you’re put into a desperate mindset. You’ll do just about anything for answers. Being told that you’ll lose access to healthcare by not agreeing to testing feels beyond cruel, because the choice is essentially made for you. Either you consent to uncomfortable/traumatic situations, or you continue to be life-alteringly sick. That’s really not a choice.
Disabled/Chronically ill people don’t want your pity, they want to live rich, fulfilling lives
You’re a medical professional, so the odds of you seeing disabled and chronically ill people in your work are basically 100%. You should learn very quickly that we don’t want your pity. We don’t want to just survive. I don’t care who it is, that person in front of you has goals and dreams. If they don’t, something else is happening in their life that needs to be addressed. We all want to live a fulfilling life. Even if you couldn’t dream of a life after an amputation or a spinal cord injury, the person in front of you can. It might look different than your life and that’s okay. But instead of assuming what your patient wants, ask them. Ask what they want to achieve, and see how you can work together to achieve those goals.
You aren’t a god-you’re my partner
As mentioned above, you as a medically professional have a lot of power over people’s lives. Even outside of life and death situations, you are the person disabled/chronically ill people are forced to turn to in order to have a quality of life. Let me break it down a bit for you, because I don’t know if medical professionals truly understand the role they play in our lives.
- You determine our diagnoses, which determine not only our treatment options, but what specialists we can see, what we qualify for, and even how we’re perceived. Now, as a disclaimer, I’m not a medical professional and you as someone in the field should use your discretion to make a proper diagnosis for someone. But you also should be mindful of the potential ramifications a diagnosis may have. Let’s take a twenty-something year old woman who is reporting that she has difficulty making friends, avoids social situations, doesn’t like new environments, and only feels comfortable with select people. With those symptoms, she may be diagnosed with social anxiety-something pretty common amongst her demographic. However, upon further investigation, it’s determined she’s actually autistic-a diagnosis that was missed in childhood because of a lack of research and false stereotypes. Because of a misdiagnosis of anxiety, she misses out on therapy options only offered for autistic people. She can’t apply for autism specific services that she might benefit from. Seeking disability benefits is going to be much harder. She’s perceived as “weak,” “unstable,” or “attention-seeking” from the public. Other doctors, upon seeing an anxiety diagnosis charted, may brush any physical symptoms of an autism comorbidity under the rug stating “it’s just anxiety.” And while anxiety is a very real illness, it isn’t the answer to every complicated presentation.
- You control our treatment options. You may be hesitant to prescribe a steroid injection to mitigate chronic pain, but a patient who hasn’t been able to get out of bed might be willing to try anything just in order to be able to cook dinner. Prescribing the newest pill might seem like a great idea, but if it’s not covered by insurance, it might just make a patient choose between groceries or the pill. Your denial to give a twenty-year old patient a wheelchair because they’re “too young” for it might be the difference between them being stuck in bed and them attending school.
- You control our testing options. While testing is often a necessity, those tests can be invasive, painful, and expensive. By ordering testing, you’re often asking someone to take time off work, travel, and lose out on income. I’ve personally had to quit jobs because they wouldn’t allow for the time off for tests, listened to doctors criticize my body, been bruised from a dozen needle sticks because they couldn’t find my veins, and been left with severe pain because of exploratory surgery gone wrong.
All of this isn’t to say you shouldn’t do the things that are necessary. There are a lot of issues within both the medical system and our government that contribute to the problems listed above. It isn’t your fault as an individual provider that your patient loses out on a paycheck or is brushed off by other specialists. You should be doing your job, which involves providing diagnoses and ordering testing that may not always make patients happy. But you have to understand that there’s a power dynamic between doctor and patient, and in order to provide the best care you can, you have to actively work to fight that dynamic. One way to help mitigate that is to view your work as a partnership with your patient. Listen to them. Communicate honestly with them. If they don’t feel a diagnosis fits them, it may be worth exploring other options. If they are desperate to try a certain treatment option, ask why and work towards a treatment that makes sense to both of you. Explain why you’re ordering testing and understand why people might hesitate to undergo those tests. Give some compassion to your patients. I know it’s easy to burn out in your field, and you might get to a point where you are just trying to get through every day, but if you want to help people you can’t lose your humanity.
In short
Half of the things I discussed above boil down to listening to your patients and actively collaborating with them. If you can do that with even the smallest amount of respect and human decency, you’re already light years ahead of other professionals.
This new generation of healthcare professionals gives me hope that you can fix some of the glaring issues within the system. I know you’re a bright class of compassionate people. You can change your workplace to be better for everyone and make it a bit less scary for people like me. I believe in you.
Did you learn anything from this post? Do you have anything to add for future medical professionals? Let’s chat in the comments!
