MEDICAL ADVOCACY
We have found that we must have advocates for medical purposes. The best thing about being an adult is that you get to stand up for yourself (or you have the skill to ask for help when you need it).
Can I tell a story? My mom had Waldenstrom’s, a blood cancer that produces thick blood. Trying to push that through capillaries puts immense stress on the heart. Her regular doctor imagined instead that her tiredness and lack of energy stemmed from low iron, gave her iron shots, and never tested for cancer or had a blood screening. Believe me, if a complete blood count had ever been done it would have been obvious (that blood is more like jelly). Iron shots did nothing. She needed an advocate.
So, after a correct diagnosis, mom had pheresis to spin junk out of her blood. Eventually she had a stroke because of the high blood pressure caused by the cancer. In the hospital my brother, my sister, and I were with her virtually around the clock. If we hadn’t been there, she would have died because no one would have been there the moment she started to choke, or her BP spiked, or when her heart rate fell. She needed advocates.
Another story. My SIL was experiencing migraines for many months (it was a new symptom). She would go to the ER and be sent home with Tylenol or such. After several of these, my wife went with her. The medical staff were about to send her home AGAIN, when my wife spoke up demanding they find the cause. As a result, they admitted her, found the cause, and three days later she went home cured. She needed an advocate.
Over the years I have seen medical practice changes (few for the better). I appreciate seeing a NP or PA when I have a cold or if it is a routine visit. However, it is more and more common to see one of these even when the patient is experiencing major symptoms. I am sure some NPs and PAs are up to the challenge, but that is when the patient should be seeing the actual Doctor. More changes are coming I expect. More advocacy may be required. It may be time to learn another adulting skill.
So How Does One Advocate for Oneself or Another?
1. You aren’t married to your doctor (congrats if you are).
If you do not feel your needs are being met ask for a referral. The doctor then can match you with someone who might better meet your needs. You don’t have to go to the referred doctor, either.
When we moved to this state, I chose the doctor group I wanted. They were ALL on my plan. They had high reviews. They were connected to the best area hospital (unless the problem was heart-related … not every hospital is great at everything). Of all the doctors I’ve had I like this one best. He listens and explains. However, if he wasn’t good, I’d be looking elsewhere.
2. We have the internet, we should use it wisely.
Don’t use it to take a new list of supposed symptoms every visit. That’s foolish. However, if your doctor informs you that your “Buck Crud Level” is low (not a real thing) you SHOULD research it online to find all the symptoms, causes, treatments and prognoses. I did with one “Crud Level” and found that I didn’t need to worry, that there was no cure, and that no treatment was worth the emotional toll. So, I will live with it and my doctor can work on things which can be treated.
3. Ask questions.
Your doctor should welcome honest questions. (AND you should not pester your doctor with worthless junk.) Go to the appointment with a worthwhile question in mind. Write it down in SUCCINCT form. Never waste your visit and never waste the doctor’s time.
4. Ask for clarity.
It is easy to become confused. You didn’t go to medical school. Why should you know what a high “Eggnog Count” means? I bet your doctor wouldn’t know what pesticide is best to control bed bugs either, and he would be just as confused if you were to launch into your pest control jargon explaining it.
5. You need to Journal your Health.
Absolutely essential. You should have a list of all medications, vaccines, BP records, lab test results, when symptoms began, etc. Your doctor asks when the symptoms first appeared… “It started a while back…” is not a good medical answer. “It started on May 4th…” is much better. If you have a dizzy spell, you should write it down. Keep track of “weird stuff” (a medical term).
6. Identify when you need an Advocate.
Do you need someone to go to the appointment with you? If it is urgent that you get immediate care, but you’re no good at standing up for yourself, … yah! That’s when you need an advocate. If you have trouble remembering…take someone with you. If you have mobility issues, take someone with you. And, if you feel medical professionals are dismissing your symptoms, you need to advocate for yourself.
7. Know what your insurance covers.
Recently someone I know kept being put off by a doctor’s office “We have to get authorization,” they said. This went on for over a week. However, that patient knew his/her insurance would cover it, so didn’t give up. On the fourth call to schedule the treatment they got the appointment. Yup! Their insurance covers it. Knowing what your insurance covers is part of self-advocacy.
8. Insist on Treatment.
Sometimes ER doctors help you realize the issue is not serious. That’s good. However, don’t allow them to ignore you if you have not been treated for a serious symptom. Sometimes the pain is awful. You should not go home with the same pain or symptoms with which you came in. This is especially true for me since my stomach will not tolerate heavy painkillers. I know this, the doctors don’t. Vicodin (et. al.) and I do not get along.
Medicine is serious business. It is expensive. Your health is YOUR job. Demand the best help in taking care of you. The next patient is not any more important than you are.
Copyright 2025 Donald Whelpley
[PLEASE NOTE that Don is always open to discussing the thoughts and opinions he shares here and welcomes comments as shared in the comment section. He doesn’t use other social media platforms and won’t see whatever you’d like to share with him if you post it elsewhere.
ALSO, Don is always open to offer his thoughts on various topics. If you have a specific request, you can let him know in a comment; he reads – and replies to – them all. ~ Sherry]
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Just read a story about medical advocacy. Woman’s husband had cancer and needed feeding tube. Her doc was snarky. She walked out of the room and went immediately to recipient rights office and insisted on an immediate change of doctor and signed papers for that. By the time she returned to the room a different doctor was already there. Her husband got the respect and care he deserved.
Been in that position also. When Pete was struggling with pain and even breathing with both pulmonary emboli and DVTs, the hospitalist advised me to contact his family to come and say their good-byes. Meanwhile a respiratory therapist insisted he could help Pete, but said hospitalist refused to allow it. In fact, they stood right outside Pete’s room arguing heatedly about it. Thank God my sister was there and knew what to do, knew about recipient rights…same thing, new doctor and RT got to work on him immediately and, though the treatment appeared barbaric, it saved Pete’s life. I could say much more about this topic but you have said it all very well!
Thanks, owly.
I appreciate your insights.
I would add two make-or-break practices in advocating. These two strategies are imperative:
1. DOCUMENT! Document! Document!
Conversations, comments, diagnoses, observations, etc. In person, over the phone, texts and emails. When advocating for someone, having all relevant information and past communications is essential. While it may seem tedious, keeping that information often determines the outcome of your advocacy efforts.
On EVERY entry, note the day/date/time/place/type of communication, name and position of person you spoke with, general information they provided, and their demeanor (hurried, superior/condescending, kind, patient, informative, etc.).
2. ALWAYS be polite and kind (non-threatening, non-angry) and firm, whether in person or submitting something in writing.
Leave emotions out of it!
Utilize facts – this is where your documentation is necessary.
Connect with the person through eye contact (and don’t glare at them).
Be pleasant.
Partner with the person so you can solve the problem together! (“Help me understand ___” or
“We’re having a tough time of it. I wonder whether ‘we’ could ___”)
Be firm. Maintain firmness, using facts and pleasant voice & demeanor.
Using these strategies greatly increases your likelihood of success!! They are principles that have brought success in my advocacy at hospitals, the state governor’s office, medical offices, the IRS, schools, and more.
@Gwen
Excellent advice.
Listen to her, sounds like she KNOWS!!!
I would add two make-or-break practices in advocating. These two strategies are imperative:
1. DOCUMENT! Document! Document!
Conversations, comments, diagnoses, observations, etc. In person, over the phone, texts and emails. When advocating for someone, having all relevant information and past communications is essential. While it may seem tedious, keeping that information often determines the outcome of your advocacy efforts.
On EVERY entry, note the day/date/time/place/type of communication, name and position of person you spoke with, general information they provided, and their demeanor (hurried, superior/condescending, kind, patient, informative, etc.).
2. ALWAYS be polite and kind (non-threatening, non-angry) and firm, whether in person or submitting something in writing.
Leave emotions out of it!
Utilize facts – this is where your documentation is necessary.
Connect with the person through eye contact (and don’t glare at them).
Be pleasant.
Partner with the person so you can solve the problem together! (“Help me understand ___” or
“We’re having a tough time of it. I wonder whether ‘we’ could ___”)
Be firm. Maintain firmness, using facts and pleasant voice & demeanor.
Using these strategies greatly increases your likelihood of success!! They are principles that have brought success in my advocacy at hospitals, the state governor’s office, medical offices, the IRS, schools, and more.