The phrase “doctor’s orders” often means doing something because a physician says to do it. These days that usually that means swallow a certain pill.
Noncompliance or Nonadherence?
Doctors have a name for people who don’t follow doctor’s orders or take their medicines as prescribed: “noncompliant.” This makes patients sound like disobedient children. You can almost imagine a frustrated parent scolding a rebellious child for not eating her peas.
If someone resists taking a specific drug, the medical record may reflect the discord with a notation “patient refuses to take medication X.” This creates the image of a problem patient willfully disregarding the wise doctor’s thoughtful advice.
In an attempt to avoid the unpleasant image of a condescending parent-child relationship, some health professionals have taken to using the term “nonadherence” instead of noncompliance. It still smacks of paternalism.
Why Don’t People Take Their Pills?
Why do some people fail to take their medicine as the doctor prescribed? Many people have reasons, often good ones.
In some cases it can be challenging to follow instructions as written. We recently heard from a woman who decided that taking her thyroid medicine, levothyroxine, an hour before coffee or breakfast was unacceptable. Skipping her morning coffee was a nonstarter.
Instead, she discovered that she could take the pill at bedtime. This was not what the doctor originally “ordered” but it was a reasonable compromise.
“Minor” Side Effects Can Create Chaos:
In other cases, a patient may discover that a “minor” side effect has an unacceptable impact on quality of life. Sometimes this is a cough caused by a blood pressure pill:
“I was first prescribed Zestril (lisinopril) for hypertension about 12 years ago. I developed a constant barking cough. My doctor never mentioned that it was a common side effect. When I found this out, I stopped taking the pill.”
The physician doesn’t always acknowledge the adverse effect. Another person wrote:
“My doctor prescribed a statin that I took for five months before realizing the debilitating aches and pains were from this cholesterol-lowering drug. She told me I had arthritis, but after only one week of not taking the statin I felt so much better.”
Diane in Texas was fired by her cardiologist:
“At the young age of 69, I was fired by a cardiologist because I, ‘respectfully declined’ to take statins. I explained that what I had read about them made me uncomfortable. My cholesterol levels were borderline. I passed my treadmill stress test with flying colors. There is no family history of heart disease either.
“The cardiologist was pleasant and told me she was releasing me back to my primary care physician. She told me to stay on a heart healthy diet. Next time I saw my PCP we talked and she agreed that it was my choice. That is why I love her and pay out of network to see her!”
This reader was not fully informed of side effects:
“Seroquel (quetiapine) left me vegetative for a short time. I was not warned about the bizarre side effects. I can’t remember much of what happened, obviously! Why don’t doctors take their patients’ concerns seriously?”
One reader got into trouble with her doctor over a drug for osteoporosis prevention:
“I took myself off Actonel (risedronate) because I didn’t like the way it made me feel. I also read about the side effects and decided that since it is my body, I have a right to determine what goes into it and what does not. Apparently not. My gynecologist yelled at me.”
Barbara in New York did not want a “biologic” for RA (rheumatoid arthritis):
“After 3.5 years seeing a rheumatologist she ‘fired’ me because I didn’t want to start taking a biologic medicine. I explained my reasons and felt it was my choice. I had already been on the chemo drug methotrexate along with prednisone all that time.
“I went to a second rheumatologist for 1.2 years who said she’d never try to force me to take any medication. That ended when she also failed to get me on a biologic and she also let me go.
“Both doctors talked to me like I was a recalcitrant child even though they both reported to my PCP that I was a very lovely lady. One called me “Trouble” when I declined to take the biologic. I have always been a respectful patient and never had a problem with any other doctors. My PCP of 40 years was disgusted when he learned of this.
“I have rheumatoid arthritis and am in my 23rd year with it. I no longer see a rheumatologist as I’ve been told none exist that will work with a patient who doesn’t do exactly as they say. I have valid reasons for not wanting to try a biologic. My position should be respected.”
Barbara has a right to refuse “biologics” like adalimumab (Humira), etanercept (Enbrel), infliximab (Remicade), rituximab (Rituxan) or tofacitinib (Xeljanz). Biologics are genetically engineered medications and target proteins within the immune system. Most are injected, though Xeljanz is an exception to that rule.
By altering cells within the immune system there are some disconcerting side effects. The body may not be able to resist infections the way it normally does. People with latent Hepatitis B may experience a reactivation of the condition. Allergic reactions may include itchiness, redness and shortness of breath. Some biologics can affect the heart. Be wary of symptoms such as swelling of hands, feet or ankles.
The FDA has a black box warning for Xeljanz:
“Patients treated with XELJANZ/XELJANZ XR are at increased risk for developing serious infections that may lead to hospitalization or death…”
“Reported infections include:
- Active tuberculosis, which may present with pulmonary or extrapulmonary disease. Patients should be tested for latent tuberculosis before XELJANZ/XELJANZ XR use and during therapy. Treatment for latent infection should be initiated prior to XELJANZ/XELJANZ XR use.
- Invasive fungal infections, including cryptococcosis and pneumocystosis. Patients with invasive fungal infections may present with disseminated, rather than localized, disease.
- Bacterial, viral, and other infections due to opportunistic pathogens.
MALIGNANCIES
“Lymphoma and other malignancies have been observed in patients treated with XELJANZ…”
Other biologics for RA have somewhat similar warnings. Patients should not be “fired” if they choose to avoid a certain class of medication.
Doing Your Homework:
“I was prescribed Cipro (ciprofloxacin) three times. Each time my reaction was extreme. Just one pill caused dizziness, strange feelings and panic within 10 minutes. When I complained, the doctor became defensive and said I was imagining the symptoms.
“I was also prescribed medicine for urinary incontinence. The medication made me dizzy enough to fall twice. I have had two knee replacements and cannot afford to fall. Now I look up every prescription before going to the pharmacy.”
Participatory Medicine Means a Partnership:
Patients deserve to be treated as equal partners in their health care. Physicians should try to address their concerns. Shared decision making is key to this approach. That requires transparency and respect on both sides of the stethoscope.
Let’s do away with the phrase doctor’s orders. It comes from a bygone era when doctors could demand that the patient take whatever was suggested without question.
That is how we ended up with hormone replacement therapy (HRT) in the form of Premarin being the number one most prescribed treatment in America. It was also a source of contention between may physicians and their female patients.
To learn more about your rights as a patient and what questions to ask we offer our book on this topic:
