We Love Informed Consent. Here's What It Is (Sept. 2024)

We talk a lot about informed consent here at QueerDoc, and there are plenty of reasons why.

First, we believe in autonomy: yours, mine, ours, theirs, and community autonomy. We believe that everyone has the fundamental right to decide what is best for themselves.

Second, we believe in consent, especially in medicine. Historically, medicine has had a problematic and traumatic relationship with consent, especially with minorities. Medicine is rooted in white supremacy and misogyny. It has been used to abuse and harm systemically undervalued people: cis women, black people, brown people, disabled people, fat people, trans people. We believe an anti-racist and re-idigenized approach requires radical bodily autonomy.

In telehealth appointments, this can mean that we:

• Check in at the beginning of the appointment to make sure we both know why it is happening and what we want to achieve.
• Ask if it is okay to talk about specific body parts and what language to use.
• Encourage you to say no to us or stop us if you do not want to continue.
• Check in frequently to ask if you have any questions.

Third, we believe that consent isn’t fully free unless it is “informed,” and that means information. To make decisions you must know how those decisions could affect you.

Ethically, we believe that our role is to give you information about your care options, in as much detail as we can, so that you can make decisions about your body that are in-line with your goals, your needs, your values, any pre-existing health conditions you might have, and your risk tolerances.

Providing informed consent is not only an ethical obligation, but also a legal and a regulatory obligation (depending on accreditation) for medical providers. There are a few things that are required parts of informed consent.

The required parts of informed consent include providing the patient information about:

• What the intervention is.
• The risks and benefits of the intervention: how it could harm you and how it could help you, and what to expect.
• Any reasonable alternatives to the intervention, including doing nothing.
• The risks and benefits of the alternatives.

The provider makes a recommendation for treatment and explains their reasoning for that treatment. The provider must also confirm and document that the patient is able to participate in the discussion and that the patient is free to make their own decisions.

Informed consent also requires a clinician’s assessment of the patient’s understanding of that information is done and documented. This is often called capacity.

So Let’s talk about capacity in informed consent.

There are four parts to deciding and documenting that a patient is capable of participating in the informed consent process and making a decision for themselves:

• Are they able to understand the information?
• Are they able to understand the consequences of their choices?
• Are they able to logically process information?
• Are they able to communicate their choice?

What are some reasons why the informed consent process can’t be completed?

• There is a communication barrier. This can include a language barrier, or a medical reason that prevents communication or makes it much harder.
  • Interpreters, language assistance tools, and presenting the information using different words can help lower these barriers.
  • This can also happen when the provider uses words or terms that the patient does not understand.
• There is a short-term reason why the patient cannot understand the information such as:
  • Medical conditions or medications that affect consciousness and thinking.
  • Immediate and short-term neurologic or psychiatric disorders.
  • Use of mind-altering substances that are not prescribed.
• There is a medical condition that affects the ability to take in, process, or understand information, and this medical condition won’t go away or resolve.
• There is a cultural or emotional barrier.
  • The provider may not understand the patient’s values or cultural influences.
    • Providers do not have the right to decide that a patient’s choice is “wrong.” However, patients must be able to explain their decision-making process.
  • The encounter may be extremely stressful for the patient. This is not a good space for consent.

• And, legally, the patient is under 18 or otherwise does not have the legal ability to make decisions about their care.
  • Minors can provide assent to medical care, which has similar components to consent, but is not legally recognized. Assent is a central part of how we provide care.
  • State laws allow minors to consent to sexual, reproductive, and mental health treatments. The age of consent for these types of care vary by state. In almost all states, gender care is not included in minor consent rights.
• “Emancipated” or “mature” minors may have the right to consent to their own care.
  • Emancipation occurs when a judge decides that a minor is independent of their adults and can thus make decisions for themselves. This is “suing for emancipation.”
  • Some regions have mature minor doctrines that allow health care practitioners to decide patient status without getting a court or a judge involved.

What happens if a QueerDoc provider is concerned about a patient’s capacity to consent to care?

• We’ll slow down. We’ll use different words.
• We’ll ask if there are any communication barriers and how those can be lowered.
• If we think you’re under the influence, we’ll reschedule your appointment and explain why we need to do so.
• We may ask you to see other medical professionals to treat any short-term conditions.
• We may ask to talk to some of your other providers to gain insight into any chronic conditions.
• We may ask for a formal evaluation of your capacity.

If there is someone else who has the legal right to make decisions on your behalf, we’ll reschedule your appointment for a time when they can be there.

We will always do our best to support you and that may include helping you find alternative care options with larger healthcare teams with additional supportive services, including primary and specialty care.

When Does Informed Consent Not Apply?

There are times when informed consent is impossible to do, or is not required:

• The patient is unconscious or otherwise not able to give consent and no one else has the right to decide for the patient.
• It’s a life-threatening emergency and the time taken to get consent would be harmful to the patient.
• Consent is voluntarily waived by the patient.

These scenarios are very rare in gender affirming medicine. In fact, we have never seen the first two.

Minor Medical Consent Laws By State:

SchoolHouse Connection is a good source of information and advocacy about minor consent laws by state. They also provide resources for youth, written by youth.

How Do Shield Laws Fit Into The Consent Puzzle?

Only a few states allow minors to directly consent to gender care as a part of their shield laws or executive orders (that we know of):

Maryland: minors have the right to consent to gender affirming care if life or health would be adversely affected.

Maine: youth aged 16+ have the right to consent to gender affirming care if they are being harmed or will be harmed from being denied access to care. Must be diagnosed with gender dysphoria, are experiencing or will experience harm if the care is not provided, and be mentally and physically capable to consent and have provided informed written consent.

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