"I just saw the doctor, and the doctor didn't say anything."
As a adult child, sibling, or best friend of someone you can see is not doing well at home, the above words is probably one of the most frustrating phrases you might hear.
As a palliative care specialist (read Post 1: What Exactly Does a Palliative Care Specialist Do?) who, for years, used to visit patients in their homes, especially when their health condition or serious illness made it too burdensome to leave the house for a palliative care clinic visit, I would meet with patients adapting around new or worsening symptoms as they struggled to make the most of their day to day lives. And these were often symptoms that were not freely offered. I often would have to sit with my patients and actively listen for about a half hour, sometimes asking guided questions, before they would feel reassured enough of my genuine interest, respect, and attention that they would then matter-of-factly share aspects of their lives that might have alarmed them at a different point in their lives.
"I have no more energy. I hold onto my walker while I vacuum two feet, then I sit on my walker to rest. After a few minutes, I get up and vacuum two more feet. I've always kept a clean house."
"I get so short of breath I usually don't make it to the bathroom. I've had to buy diapers."
"This pain in my back and legs is almost too much. I count the steps it takes to walk from the recliner to the bathroom and that's how I make it to the toilet. It's 13 steps. I know I can walk 13 steps. And I take 13 ibuprofens every day."
"I don't know why I'm so weak. At least I have my provider to prepare me soup in the mornings...What do I eat the other 19 hours in a day the provider isn't there? I don't. I'm too weak to carry the bowl of soup from the fridge. I just wait until the provider comes back."
We, as human beings, have incredible capacity to adapt, though some aspect of that mental and emotional adaptability may involve denial (read Post 33: Seven Ways to Approach a Person in Denial). Denial can be a normal, much needed coping mechanism to give the brain time to adjust to a potentially terrifying reality. However, denial can be harmful if it prevents someone from seeking help for serious symptoms. "That's just a bad rash on my breast. It's been there a while...it's probably a reaction to my clothes. No need to see the doctor and make a big deal about it."
Sometimes, it is not denial but a variety of other reasons (read Post 13: Sometimes It's Denial, and Sometimes It's Just Really Bad Timing and Post 70: It's Not Cowardly to Not Want to Know).
And sometimes, it is a combination of denial (that is, fear of hearing out loud what worsening weakness or rapid weight loss could indicate) and the sense that we are "bothering the doctor" that prevents us from speaking up.
When I ask patients why they have not brought up their bothersome symptom or burning question with their primary care physician or their specialist, again and again patients, especially older patients, give the following responses:
"The doctor seems so busy. I don't want to hold her up."
"The doctor has had a lot of training. I don't want him to think that I'm questioning his expertise."
"I don't want the doctor to think I'm a bad patient. I let him think everything is okay."
"I don't want to seem disrespectful to the doctor. I don't want to ask too many questions."
So, the doctor writes in their note, "Patient has no complaints. Follow up in 3 months," while family members stare in disbelief at their loved one as they shrug and say, "The doctor didn't say anything."
I am one of those family members. It is really hitting home as I hear from my loved ones the same comments I hear from my patients.
"I didn't tell my doctor that the blood pressure medication makes me dizzy. She's had a lot of education. I don't want her to feel bad. I just take half every other day."
"No, I didn't tell the doctor about losing weight or feeling weaker. She saw me trying to stand, and she made a surprised face, but she didn't say anything...Oh yeah! she showed me a picture of her baby. He's cute."
So, what can patients (and their family members) do to advocate for their best care?
Communicate your "complaints" - your questions, concerning symptoms, and worries. You may have to emphasize the importance of this "complaint" with your tone and with your repetition. You may have to engage a family member or friend to join in with you in speaking up, whether they be present in person or via speaker phone to speak with the doctor. You can be both respectful and insistent. Sometimes, the best plan at the time is "monitoring," but at least you will have discussed with the doctor next steps if monitoring does not work out. Make sure you let the doctor know if monitoring is not working out.
We feel comfortable bringing our car to the repair shop and reporting as best we can exactly what is not working with the car so the mechanic can focus diagnostics in that area. If we are not as specific as possible with what we notice going wrong with the car, the mechanic may end up doing a "work up" that does not reveal anything. If the mechanic asks if anything is going on, and we reply, "Nothing. Everything's fine" (like we may do at the doctor's office), the mechanic will likely do a tune-up and nothing more.
The equivalent of a tune-up at the doctor's office may range from the doctor primarily asking if anything is going on while glancing at a snapshot of vital signs to possibly listening to heart and lungs (which almost never reveals answers as to why someone is losing ten pounds or why their legs give out when they try to stand up on their own) to possibly ordering annual labs. Annual lab work essentially consist of cholesterol levels, blood sugar levels, electrolyte levels, kidney and liver functioning - which will often have normal values in early stages of cirrhosis, vitamin D levels, blood counts, and thyroid hormone levels.
The labs will generally not reveal if someone has dementia, stroke, heart attack, multiple sclerosis, rheumatoid arthritis, emphysema, early cirrhosis (scarring of the liver that if it worsens over time, causes liver failure), cancer, and many other serious health conditions. They may not even pinpoint early infection.
Now, a focused exam may reveal findings that causes the doctor to order tests that could result in the diagnosis of a serious health condition...but that focused exam is usually only done after the patient reports their symptoms.
We do not want to be seen as complainers and whiners, especially when part of our identity is that of a fairly active, independent, or stoic person. However, in the medical world, "patient complaint" is still the official medical term for "patient reporting anything they want looked at." The first category of a patient note is often "Chief Complaint" and the first line may begin with "Patient complains of..." If the doctor is sticking to medical terms (read Post 79: Doctors Can Hide Behind Technical Terms and Ambiguous Words - 4 Tips for Getting Clarity), they may even start the conversation with "Any complaints?"
So, if we are to advocate for our best medical care, the following are suggested tips to consider:
1. Remind yourself (repeatedly, if need be) that you are the “customer” with a right to a satisfactory “product.” The satisfactory product is the doctor working with you to determine the cause of (and if "fixable," a solution to) your worrisome symptoms.
2. Realize that the doctor will likely take your well-being at face value if you do not report concerns.
3. Write a concise list of top two or three most concerning symptoms or questions so you do not forget to mention them at your next doctor’s visit.
4. If you feel hesitant about speaking up, practice speaking out loud bringing up and unapologetically stating your concerns.
5. Bring a couple copies of your list of questions to the doctor’s visit, and give one copy to the medical assistant or nurse when they ask if you have any questions for the doctor. This list will help the doctor rearrange their “agenda” for their meeting with you. Also, the doctor has a chance to formulate potential possibilities and diagnoses, which they can further narrow down with focused questions and examination when they see you.
6. It may be easier for a loved one or caregiver to provide relevant details of your worsening symptoms. If so, consider bringing a “second brain” who will vocalize the questions, describe your changes at home, and take notes. This “second brain” could also be present on speaker phone.
7. Verify next steps with the doctor before leaving the visit. “So if I don’t hear back from your office about a referral within how many days, should I call back?” or “I’m going to add peanut butter and avocado to my mom’s smoothies each day, and I’ll keep track of her weight. If she loses another 5 pounds, I’ll make an appointment for her to see you sooner than in 3 months."
It can be scary when the body cannot do what we would expect or what we may have taken for granted it could do. I hope the above perspective and suggestions aid in more effective communication between you (whether you are the patient or family member) and your doctors. I hope you find that you do not have to deal with such big changes alone and instead, in partnership with your doctors.
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