I was nearly 30 years old before I fully understood how consent works in places outside of sexual relationships.
It was hammered into my head that “No,” means just that, and anything other than an enthusiastic and fully consensual “Yes,” was the same as a “No.” Even still, I had my share of questionable experiences where lines were blurry. But one thing was always understood. Conversations about and the acknowledgment of consent was expected as the bare minimum when relationships got physical, and anything less than that incredibly low standard was unacceptable.
That’s my privilege showing because to fully execute your right to grant or withdraw consent, you must first feel safe. Safe enough to raise your voice and risk putting yourself in a situation that’s uncomfortable
(at best) or dangerous (at worst). For me, that’s nearly always been the case. For others, that’s never been the case.
And that’s why healthcare and helping professionals must do better when it comes to creating a safe environment for all people to feel secure and supported.
Consent in Health Care is Often Assumed
I worked for a short time in nutrition research, in a lab conducting studies for metabolic syndrome and lifestyle interventions. That meant I spent a fair amount of time recruiting study participants and reviewing the study protocol with them. Informed consent is a big deal in research; due to some highly unethical practices in the past, it was common for vulnerable populations to be taken advantage of in the name of medicine or science.
That just doesn’t fly anymore, thanks in part to laws and regulations around informed consent. The whole premise of informed consent is to fully explain the possible risks and benefits of participating in the study so someone can decide whether or not they wish to participate. When you know about the potential consequences, good or bad, you’re better able to feel informed and empowered before you grant permission.
Another big piece of informed consent is being able to withdraw consent at any time. This explains part of why health and nutrition research is so challenging. It’s simply unethical to force someone to continue participating in a study if they wish to drop out or change their mind.
But just because that’s the way research approaches consent doesn’t mean that’s the way it works in the real world. Sure, it’s assumed you’ll get a rundown of the pros and cons of a treatment. Or you’ll be told about the side effects of a medication. It’s also assumed, however, that some voices in an exam room are louder than others. It’s simply the nature of the beast. There’s a hierarchy in healthcare we don’t speak about.
We need to.
Especially if we care about health as much as we say we do.
Healthcare Doesn’t Always Feel Safe to Everyone
Think back to the last time you visited your doctor. Could you:
- Assume you would be acknowledged upon your arrival in a nonjudgmental manner and be able to sit inconspicuously while you waited?
- Trust that financially, you would be able to pay for the care you received, whether through private means or your health insurance?
- Feel relatively confident you would be heard and understood as you explain your symptoms or reasons for your appointment?
- Rely on transportation to get you there and back, whether that was by your own means or via public transportation options that were safe and accessible?
- Feel comfortable disclosing different identities, statuses, or histories with your healthcare provider without compromising your care or feeling unnecessarily uncomfortable?
This is by no means a comprehensive list. If you found yourself thinking, “Hmm, I’ve never really had to think about that,” it’s likely because you belong to one or more privileged groups.
Now, let’s pause for a moment to remind everyone “privilege” isn’t an inherently bad thing. No one asks to be born into a privileged group, just like no one asks to be born into a marginalized or stigmatized group. You may experience some benefits based on certain privileges, such as being young or able-bodied, while also facing bias or discrimination based on other factors, such as your gender identity or belonging to an ethnic minority. Unearned privilege is a sticky subject but we have to face it.
Modern healthcare is largely designed by and for the normalized (read: most privileged) group. That is to say, it’s a system that caters to white, male, Euro-centric, heteronormative standards. It shapes the research for lifestyle and pharmaceutical interventions, it shapes medical education and training, it shapes the policies and protocols for everything from health insurance plans to intake procedures to the language used to describe our bodies and the maladies that affect them.
A Culture of Consent Creates Less Stigmatizing Care
I feel this is so important to address now, considering February is American Heart Month. Campaigns and messages are flying at us from all directions encouraging us to seek preventative care and be proactive in knowing our health status. But we can’t talk about being proactive about taking charge of our health if we don’t feel empowered enough to engage with the healthcare system as a whole. Healthcare avoidance is a known consequence of sub-standard, demoralizing, and stigmatizing care.
Our westernized, individualistic culture loves the notion that health boils down to personal responsibility. If we just try hard enough, good health is ours to have and we’ll reap the benefits of it. If we don’t invest the time, money, or resources to pursue good health like our society thinks we should, we’re judged, shamed, blamed, or worse.
Can you imagine a flipped version of this? What if better health is not, contrary to popular belief, the result of willpower or self-discipline? What if it were instead the cumulative result of a complex web of factors of which only some are in our control?
Hint: It’s the former.
Consider your last experience with food poisoning. What did you eat that made you ill? I’m willing to bet it took some time before you dared to consider letting that food pass your lips again. Maybe you swore off that food forever, avoiding it at all costs because the thought of it alone is enough to twist your stomach into knots.
Now replace “food poisoning” with “bad experience at the doctor’s office.” What happened that made you feel unworthy of better care? I’m willing to bet you left thinking, “I’m not about to do that again anytime soon.” Maybe you resolved to find a different doctor, or if there were no other options, you disengaged from participating in healthcare completely.
This happens. It happens every day. It happens to people we know and care about. And it happens often enough it’s at least partially to blame for the so-called healthcare crisis we’re now facing in America.
So what can we do about it?
I can only control what I do in my interactions with clients and patients. Individually, I know I can’t do much to right this ship. But I believe we can collectively start with recognizing consent as one of the key ways to infuse more compassion into healthcare and make these experiences as inclusive as possible. I’m not saying it’s possible to completely eradicate stigmatizing experiences, at least not right away. We can’t possibly know what may be triggering for all people, but if we approach situations in a trauma-informed way we can do a little due diligence in trying to impart less trauma.
If we seek to obtain consent often and repeatedly, we tip the scales of power back toward the people who don’t often feel they possess any power at all in these situations. Stigma is a known contributor to stress, and stress is widely acknowledged as being a generally “bad” thing for health. An entire wellness industry has turned its focus to managing stress, all the while failing to see that they aren’t getting to the root of the problem.
What does it look like to seek and confirm consent often? Providers can start by asking:
- Is it OK if we get your weight before we head back to the exam room?
- Can I ask you about _____?
- May I offer a little more information about that?
- Would you like to hear a few of the recommendations I’d like to start with?
But it’s not enough to simply ask a question and leave room for one of two responses. We often want to say, “No” but default to saying yes or agreeing to whatever comes next. We have to also offer an alternative, letting people know they have permission to opt out in a way that feels safer than challenging the status quo.
What might that look like? Simply offering, “Is it OK if I ask you about ____? If you’d rather not discuss that, let me know and we can move on to a different question.” This might be news to some, but there are other ways to collect whatever information seems necessary.
And news flash: not all information is necessary all the time. You don’t need to know someone’s weight to treat a common cold. You don’t need to know someone’s gender identity to tell they need an antibiotic once the labs come back. You don’t need to dig into family histories or early childhood experiences to make a referral to a specialist. So to the healthcare providers reading this: we need to stop assuming we are privy to every detail we think we need to know. Oftentimes, we don’t need to know.
Other times, it might take a little time and space for someone to process. People are not dumb. But we might feel that way when we aren’t versed in the language or jargon we hear in unfamiliar settings. It’s rare to have time to burn in an appointment, but letting someone know it’s OK to slow down, repeat information, or explain it another way also helps them get what they need in that moment.
This is tough stuff. It’s not easy to reflect on how I’ve inadvertently caused harm or created uncomfortable, unhelpful situations in my work as a dietitian. But we can do hard things, and just because something is hard doesn’t mean it isn’t worth doing.
If we can talk about consent in the context of personal, sexual relationships, we sure as hell can talk about consent in professional, medical relationships, too. We can, and we must.