Even though her eyes were clouded with cataracts, Mrs. Romero's gaze was steady, leaving no room for ambiguity. No room for argument. "I won't take insulin," she said firmly, "I don't care if I die." Period. End of discussion. At 85-years-of-age, my patient was joining the ranks of a new movement: elderly patients who refuse to take medications ordered by their doctors.
Isolated incidents or the cusp of a new trend? Just how big is this issue? How many drugs are elderly persons with diabetes (PWDs) expected to take, anyway, and is that number unreasonable? And just what does the healthcare establishment do to encourage your grandparents to just "take their medicine"?
It's a surprising battle of wills that pits the fundamental issues of personal choice against the medical establishment; and maybe even against the greater needs of society, as well.
The Greying of the Diabetes World
PWDs worldwide are getting old. Well, statistically. As a group. A double-whammy is causing this demographic shift: first, PWDs diagnosed earlier in life are living longer; and second, people in general are living longer. As our population grows older, more and more senior citizens are being diagnosed with diabetes.
That's changing the face of diabetes care. Doctors are now thinking longer term, and making greater efforts to keep blood sugar controlled in elderly patients, than they did in the past.
The vast bulk of this grey diabetes population has type 2 diabetes, a progressive disease that requires greater and greater levels of medication over time to control. Add to this an arsenal of "standard of care" medications that are part and parcel of diabetes treatment, and seniors can end up taking quite a few meds.
In fact, many elderly PWDs take at least three blood sugar-lowing pills, plus another four standard of care drugs, depending on their doctor's playbook. That's seven prescriptions. Just for diabetes.
And unfortunately, diabetes is rarely the only condition the grey crowd is fighting.
How Many Prescriptions?!
The data on just how many prescriptions the average senior takes can be highly misleading, because there's no such thing as an "average senior." Oh, that, plus the fact that the Feds only track the percentage of people who take more than five prescriptions. However, a few years back, a study by Medco Health Solutions found that almost half of senior citizens take 4-9 prescriptions a month, a quarter take 10-19 prescriptions, and... are you sitting down? ...six percent of seniors take 20 or more prescriptions per month! And all indications are that prescription drug use has risen since that time, and continues to rise.
Is it any wonder, then, that some are choosing to "just say no" to more drugs?
The Revolt Against "Compliance"
The "Adherence Issue" has long been known to doctors and pharmacists. Medical researchers noted that as the volume of medications increased, the "compliance" levels dropped. Simply put: the more people were asked to take, the more frequently meds were skipped. However, for many years these facts were viewed rather paternalistically as being a memory issue, not a choice. This lead to much hand-wringing and worry about how to help seniors "remember" to take their meds. It also led to an industry of physical solutions like pill boxes, including some frighteningly large ones that put bingo cards to shame.
It never seemed to occur to anyone wearing a white coat that the lack of adherence was a conscious choice. And while there was no formal declaration of war, no protests, no organized resistance — one-by-one, a quiet revolution was born. Often without telling their doctors, and sometimes without telling their loved ones, seniors started making the decision not to take some, or all, of their meds.
While no statistics on this revolt exist yet, doctors we polled all said they have more than a few patients who are "non-compliant" with their medications. And older PWDs seem to top the list of these "trouble makers."
Quality of Life vs. Quantity
But why would you stop taking a med that keeps you healthy? An increasing number of seniors simply believe that their quality of life trumps quantity; and they frankly can't see how some of their meds help that quality.
A good example is seen in cholesterol-lowering meds. While doctors believe that high cholesterol is a proven risk factor for heart disease, patients can't feel cholesterol. High, normal, or low, it makes no difference in how they feel. But seniors sure can feel cholesterol medicine, especially in their wallets, and in some people in the body as well. Cholesterol meds cause body aches in many people, and some formulations raise blood sugar as well. This can make it hard for seniors to take the long view of the value of the medicine.
Viewpoints vary on how to encourage med compliance, and no one has a recipe for success at this time. Several studies have shown that using mail-order pharmacies increases medication compliance over local pickup, and while this addresses transportation issues or forgetfulness, it doesn't address the issue of seniors choosing not to take their meds.
It's shaping up to be a battle of wills. On one side, doctors, by oath, must do all they feel is within their power to keep their patients healthy. So from the point of view of the medical provider, no volume of pills should be a barrier, given the possible outcomes of not taking your medicine. Standing shoulder-to-shoulder with the doctor, in most cases, are the adult children of the elderly, caregivers who may jump on the just-take-your-meds-mom bandwagon out of love, caring, and the desire for their parents to be around for as long as possible.
Medicines can be powerful and wonderful. They have to potential to add years to our lifetimes. But it's hard to imagine how anyone benefits in terms of quality of life from regularly taking 20 drugs. Or more.
Isn't this a matter of personal choice? Maybe, maybe not.
Some advocates argue your life is yours to live, while others point out the cost to society of not taking your medication. Letting your diabetes run amok could land you on dialysis or blind. Not taking your medication for cholesterol could buy you a heart attack or stroke. The cost of treating preventable outcomes is high, as is the follow-up care for those who become disabled by health emergencies.
Mrs. Romero felt changing to insulin was too much of a hardship for her, and she stuck to her guns. Some advocates would support her decision and argue it was her life to live, while others might point out the long-term cost to society, as mentioned above. Mrs. Romero is on oral meds that are maxed out and not adequately doing the job, but at least she's still taking them.
Personally, I think if my doc ordered me to take 20 different drugs, I'd join the rebellion, too.