After a massive response to my reply on Twitter to Zuby, I realized I really needed to write the primer on patient rights post that’s been kicking around my head for a while.
Before I took my schooling to become a Health Information Management professional (specifically, an MOA or Medical Office Assistant, with plans to do more schooling later and become a certified HIM professional), patient rights were something I didn’t really understand, or understood only in very broad strokes.
The benefit to taking the MOA training is that it taught me my own rights as a patient — and it helped me decide I would be a fierce advocate for patients and their rights in any way I could.
It is sad that patients need to advocate for their rights in the first place — they should be understood and respected by everyone in the medical profession that a patient comes into contact with. In a perfect world. (Pretty sure it ain’t this one.)
Part of the problem is the way patient rights differ from country to country. When I speak of patient rights, I am broadly speaking of Canada. The differences between my country’s patient rights and those of other countries I can’t speak all that well to — and I think not many others could, either.
Patient rights are trampled over every day
In healthcare settings, patient rights are ignored, forgotten, or even stepped on by healthcare providers. I am not trying to lambast anyone with this. I’m just stating a fact.
Nor am I trying to paint a picture of uncaring, rights-eroding healthcare professionals. The vast majority of us didn’t get into healthcare for the pay or how we’re treated by the general public (hint: it’s badly). We got into it because deep down, we want to help people. (Yes, even us records gremlins in the back with the charts. Proper flow of information is crucial to good patient care.)
No. The truth is, healthcare workers are human, just like everyone else. We have our bad days, just like everyone else. And sometimes we fuck up.
This is why patients need advocacy.
It is essential that patients have someone in their corner, standing up for their rights. It can be themselves, a family member, or a trained health advocate (they exist!). Most often it will be the patient themselves.
The first step for patients to become successful advocates for their rights is for them to have an understanding of what those rights are.
The Right of Refusal
Let’s start where my tweet did, shall we? The right of refusal.
As a patient, you have the right to refuse any treatment. Even if it would save your life. Even if you’ll most assuredly die without it. Even if it is the only thing between you and oblivion.
You also have the right to stop treatment after it has already begun — the right to refuse includes the right to revoke consent.
Anything that interferes with your ability to refuse treatment is interfering with your rights.
Such as, say, a mandate that you will lose your job unless you take medical treatment that was never a requirement of said job in the first place.
Coercion of any sort interferes with your right to refusal. It also interferes with…
The Right of Informed Consent
If you are being coerced into taking a medical treatment you do not want, by definition you are not giving your informed consent.
Consent under coercion is not consent. Consent under coercion is not informed — if you must be coerced into consenting to something, then you are not being given all the facts.
As a patient in Canada, you have the right to know the risks and benefits of any treatment being offered to you before you consent.
Being told something is “safe and effective” or “has no side effects” is not being given all the information needed to give informed consent. Having your livelihood threatened is coercion, and as we already went over — coercion negates consent.
This is true of all treatments — not just the ones currently in the news cycle.
Sometimes (often), your family doctor won’t know all the risks and benefits of a proposed treatment. Rarely, they’ll say “I don’t know, let me get back to you on that.” More often, they’ll say “There are no risks!” (Safe and effective.)
Be prepared to do your own research. Come back to your doctor with specific questions. They might still have no idea, in which case…
The Right to a Second Opinion
Or third, or fourth, or however many you need.
Doctors are not infallible. They are not gods, blessed with infinite medical knowledge.
They’re human. They make mistakes. Sometimes they’re just shitty people.
Humans gonna human, after all.
A family practitioner especially will not have specialist knowledge on a great deal of medical things. If you are dealing with any sort of medical issue that is outside the bounds of everyday allopathic care, your GP may very well not have the first clue of how to help you out.
This is why we have specialists. This is also why we go see other doctors, to try to get different opinions on what is going on with us.
This is why it is a patient right to do so.
If a doctor tells you they do not allow for second opinions — that you will no longer be their patient if you get one — that is the biggest of red flags. Run, do not walk, away.
In the case of a medical treatment so politicized it’s almost impossible to find a doctor who will give an opinion beyond “it’s safe and effective”, you may need to get your second opinions elsewhere. Crowdsource them from doctors brave enough to speak out publicly.
In general, doing your own research is not a bad thing when it comes to taking care of your health. It is much-maligned in these days of the new religion of Scientism, but actually it is one of the best ways to safeguard your patient autonomy.
The Right to Privacy
Oh, this one is a big one. So big it is the main patient right that informs my professional ethics.
Yet it is the right that people are fastest to throw out the window. Not just for themselves, but for everyone else.
No one has a right to your personal or medical information except you and anyone you give consent to. Your doctor has your consent, as part of you seeking treatment — they are required to look at your information as part of their duty of care.
In general, anyone providing care to you needs to see your information in order to give the best care they can give. So when you seek medical treatment, you are giving a tacit consent to have your relevant medical information reviewed by those treating you.
(Relevance is a tricky question. In medical settings, most things are relevant, because to see patterns of disease you must view the entire picture. In other settings, relevancy is much narrower.)
For a lawyer to see your medical records, you must give consent. Yes, even for your lawyer. And then, it can only be medical records that are relevant to the case at hand.
Side note, because not many people know this and I think it’s important to know: when your medical records are subpoenaed as part of any case you are involved in, you have the right to ask your doctor’s office to black out any information that is not strictly relevant to the case.
Most people don’t ask, because they tend to assume that the doctor’s office will just do that as a matter of course. But if the lawyer’s office asks, for example, for all chart notes regarding a car accident you were in, you have the right to ask the doctor to redact everything that’s not medically relevant.
So if you said something during one of those appointments that a) is not medically relevant and b) you didn’t necessarily want to get out in court, you can ask your doctor to black it out from the chart notes before they send the files to the lawyer.
Does that mean you can’t share your information yourself with others? No, of course not. It’s your information. If you want to be completely open on your blog or your Facebook about your health struggles or wins, that is your right.
It is also your right to keep all of that completely private from everyone — even your nearest and dearest.
To that end: vaccine passports are a complete attack on the patient right to privacy.
A lot of vaccinated people were happy to take selfies of themselves as they got the shot, posting it on Instagram, Twitter, Facebook. That’s their right — it’s their medical information they’re sharing.
I’m not sure if it’s sheer, unchecked narcissism or something else for them to now argue that everyone should be mandated to reveal their information in order to live a normal life.
More likely (hopefully!) wilful ignorance.
The Right to Patient Autonomy
This means you have the right to make your own decisions regarding your medical care. It dovetails with all the rights I’ve mentioned above, and you could say that this right is the cumulative effect of all other patient rights taken together.
I haven’t gone over every single right individually in this piece — it would run too long and you would get bored. So I’m going to briefly talk about some other rights I didn’t cover, and then a bit more about patient autonomy as a whole.
As a patient, you have the right to “receive appropriate and timely care,” the right “to be treated with dignity and respect,” and the right “to receive health services without discrimination.”1
Many patients don’t receive appropriate and timely care — the first often lacking because not all doctors know everything about every issue, and the second because of the burden our healthcare system has been under for years now.
Thus, the right to a second opinion is not only your right, often it is necessary — otherwise you might not get the care you need.
Even more patients are not treated with dignity and respect. Healthcare providers are humans — which means they have biases and bad days. The bad days can affect anyone, but the biases tend to centre on patients who are actually at higher risk for various health issues.
Whether those patients are at higher risk because of the bias, or because they already were — I don’t have an answer.
Patients who are subject to bias in healthcare settings (an incomplete list): obese/overweight patients, Indigenous patients, patients with addictions, patients with complex chronic issues that require they do their own research, patients with mental health problems.
Again, I am not saying this to malign doctors and nurses. I have worked with a great many of them who are excellent to the patients they take care of. However, these biases exist, and they contribute to systemic healthcare problems — and if I did not address them in this piece, I would be remiss.
Patients get added to that category all the time. Humans are very susceptible to propaganda, and when a message is repeated enough in all our forms of media, even the most compassionate people will internalize it.
For years it’s been obese people, and people with addictions. The propaganda has made it seem like people have “a choice” to be fat, or to be addicts — the truth is much more complex and not something I can get into here. Suffice it to say, boiling it down to something as simple as “choice” misses almost the entire picture.
But when people believe you have a choice to be unhealthy, then they believe you also don’t deserve the same standard of care that people who “choose” to be healthy get.
It is an absolutely horrifying idea to me. I got into healthcare because I believe that all humans, regardless of their health status, deserve appropriate care. That it is their right.
Just as I would not refuse to help someone based on their ideological views, even if those views are downright disgusting or poisonous, I would not refuse to help them based on their health status or, indeed, the choices they make regarding said health status.
This is because they have autonomy. The right to make their own decisions.
And healthcare providers are tasked with a) respecting that autonomy, and b) treating patients even if it seems those patients are determined to undermine their own medical care.
If they do not, they are disregarding patient rights — which to me is the biggest sin a healthcare provider can commit.
I’m going to repeat that, because it’s so important.
Disregarding patient rights is the biggest sin a healthcare provider can commit.
The Responsibility Now Given You
If you’re my age and you live in North America or most of Europe, or anywhere else that has seen freedom and democracy for decades, you grew up with most of your human rights being something you can take for granted.
While we might believe that our human rights are inalienable — and I do — that doesn’t mean we can always trust in them being there.
We’re humans. We form societies, and governments, and trust those things to rule us fairly. To continue to respect our inalienable rights.
But they don’t. That’s the sad and hard truth of it. They don’t.
Times always come when someone is trying to erase your rights. Very often, their argument contains something along the lines of your rights interfering with theirs.
But there are some things we don’t have a right to — like being safe. Safety is not a right. It’s a luxury and a privilege. It’s not and never will be guaranteed 100%, because 100% safety will always come at the expense of others’ rights.
We have a right to life, liberty, and the pursuit of happiness2 — but life doesn’t supersede liberty, and life cannot be protected 100%. Life includes danger, and it includes death. We haven’t yet found a way to stop that.
So when the argument comes from the mouths of would-be dictators that those who are exercising their rights to bodily autonomy are putting the safety of others at risk, and that those others have the right to be safe from risk…
That is a lie.
It is a lie being wielded to make people believe that these rights that I have outlined above are negotiable. That they are something we can put limits on in order to “protect” people.
They are not. And I’m sorry, but the time has come when we need to fight for these rights. Tooth and nail, with everything we have.
Because if we let them chip away at our patient rights with these “small” measures — vaccine passports, mandates, preventing unvaccinated from having any sort of normal life at all — then we have given them the tools to eradicate our rights completely.
Whatever rights you do not fight for today are ones that your grandchildren will never know existed.
So I’m sorry, but if you’ve read this far, you have been given the gift of knowledge of your patient rights — and are now tasked with the responsibility of fighting for them.
Dark times end, but only because courageous people don’t stop shining their light.
Source: Canadian Health Advocates Inc.
Forgive my Americanness coming out there. It’s not quite the same in the Canadian Charter — we have the right to “life, liberty, and personal security.” Of course, you might make the argument that that means I’m wrong, and we do have the “right to safety” that I stated we don’t. I disagree, but that’s the nice thing about this country. You’re able to disagree with others on things and it doesn’t have to end with legislating their rights away.