Advocating for a higher-weight person at the doctor’s office

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This came up in our monthly Subscriber Ask Me Anything discussion and it’s something I get asked about a lot – how can you advocate for a fat* friend/family member in a healthcare appointment?

I’m a Board Certified Patient Advocate but you don’t need to be certified to help! Today I want to offer some basics for those who may be advocating for a fat person, at the end of this post I’ll include links to advocate in specific situations.

Before I get into it I want to say that higher-weight (and other marginalized and multiply-marginalized) patients can often be treated better if someone is there with them.  That person doesn’t need any specialized skills or knowledge, simply being there in the space is enough to be helpful.

Ok, let’s start with what advocating means. We often think about going to the provider with the patient and that can definitely be part of it. It can also mean calling ahead to see if a provider is weight-neutral (or at least willing to give weight-neutral care.) It could mean helping to research something that a healthcare provider has said. It could mean being on speaker phone while a hospital patient is interacting with medical providers there, and more. There are also advocates who work specifically in medical billing, elder care, end-of-life care, and more.

While there are many different ways to advocate, there is always one most important rule: You should advocate only if/when the person has asked you to advocate, only in the ways that they have asked you to advocate, and you should stop the moment they ask you to stop. Remember, it’s not about you centering yourself (and it’s definitely not about what you think is best for the patient, unless they are specifically asking you to share your opinions/knowledge and even then, tread lightly.) It’s about you supporting the person for whom you are advocating to get what they have identified as their wants/needs in the ways they have asked you to do that. For today, we’re going to be talking specifically about advocating for patients at the doctor’s office.

A bit of administration: If you are going to be attending an appointment and/or talking with providers and/or administrative staff on behalf of a patient, make sure that the patient adds you to their HIPAA approved list (the list of people with whom the provider is allowed to share medical information.) Depending on the facilities’ policies, you may need separate permission for each provider. It’s best to have this done as soon as possible, especially if you might be advocating in an emergency situation. Ask the patient what access they want you to have – talk with the provider? See their medical records?

Here are some things that I often do as a patient advocate that may be helpful:

Before the appointment

Communication is key here. Use those good old reflective listening skills. Ask the patient what they want, summarize what they say to you, and make sure that you fully understand.

Have a conversation about what would make the patient feel most supported. Do they just want you there for moral support? Do they want you to just speak to them (ie: remind them of questions they had)?

Do they want you to speak to the provider? When I attend an appointment with someone and they have said that they want me to speak to the provider, we often have a signal (ie, in a nod to The West Wing, tugging their earlobe) that they use to let me know that they’d like me to step in. I also ask about what tone they want me to use with the practitioner – do they want me to be conciliatory? firm? aggressive? Match the patient or provider’s tone in the moment?

What are their goals for the appointment? Do they want to get a medication refill, a referral, a diagnosis, an explanation etc.?

Do they want you to take notes or record the conversation (if recording is legal in this situation, you’ll want to check with an attorney.) Notes and recordings can help the patient, but also if they need to file a complaint or pursue any legal action, having contemporaneous notes can be very helpful.

Having these conversations ahead of time can help make sure that we are offering support in its true meaning - what the person being supported wants, when, and in the way that, they want it.

Know what you can do…and what you can’t

It’s also important to understand your own limits and capacity. Some patients want someone to stick up for them with their doctor, to talk about the evidence and push back against weight loss recommendations. Some patients need to get their doctor to refer them to a specialist and it’s crucial that the advocate not upset their doctor in any way.

In the former situation the advocate has to be ready to be clear in their communication in the midst of a power imbalance as well as continuously paying attention to their patient to see if they give the signal to stop. In the latter, the advocate may have to sit through a large amount of weight stigma and information about weight and health that they know to be incorrect and dangerous, delivered by a doctor to their patient, without saying anything and while being polite and kind.  Also, these are two ends of a spectrum along which each experience can require different things. There may also be technical issues to deal with that require understanding, sometimes an advanced understanding, of the medical and/or administrative side of healthcare.

Any/all of these things may be in or out of our personal wheelhouse/comfort zone/capacity and there is absolutely nothing wrong and no shame in that. What’s important is that we be honest and clear with the patients about what we can and can’t do and support the patient to ask for additional help when/if they need it. Remember that what’s important is making sure the patient gets what they want and need.

If you want to learn more about being your own medical advocate it’s the subject of my workshop tonight – there’s a pay-what-you-can option so money isn’t a barrier and all registrants get a video. You can find details and registration here!

Here are some posts that can help you advocate in specific situations:

Pushing back against weight loss recommendations:
Here is a quick guide to talk to healthcare providers about weight

Who says intentional weight loss fails most of the time

The harm of weight cycling

Why we don’t recommend weight loss (HAES Health Sheets)

Dealing with a BMI-Based denial of care:
This series contains that basics around fighting denials of care as well as links to research to support specific cases including joint surgery, gender affirming procedures, and lumbar spinal procedures.

Declining Weight Loss Drugs

I have a quick guide here

Research bank

I have a research bank here with research to support weight-neutral care and to push bank against weight-centric care

Do you have more thoughts on advocating? Feel free to add them in the comments.

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More research and resources:
https://haeshealthsheets.com/resources/

*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings’ Fearing the Black Body – the Racial Origins of Fat Phobia and Da’Shaun Harrison’s Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this.