My generation is living longer than old folks used to live. In 2024, the average death age will be 79. Compare that to the average death age in 1940 of 62. Those 17 years of additional life have major impact on all of us, not just the elderly, as headlines regarding Social Security and the housing shortage will readily reveal. Today, however, I want to focus on the impact on medical care of this huge bolus of 80 year olds and on the urgent need for we aged ones to self-educate and self-advocate and/or find allies to help us do so. Our medical system is failing us badly.

A couple of points:

1. Diseases patterns, diagnoses and treatments for the elderly are new and poorly researched. In an earlier blog post, I shared concerns about the lack of research into medications used by the elderly, even in things as simple as pill bottles. As I pointed out then, the lack of pharmaceutical research leads to an amazingly high incidence of iatrogenic illnesses in the elderly. (How about the fact that falls and some dementia are often linked to medication?)  Quite simply, we are often made ill by the medications and treatment intended to make us well.
2. If the research doesn’t exist, then our physicians can’t know it. Even if the research is 20 years old, it takes a very long time to become a part of a practice. My most recent health diagnosis is hyperparathyroidism, which was only recognized as an illness in 1988. The research about it has mostly not reached primary care physicians or the public. There is general agreement that this diagnosis is under-recognized and under-treated as a result; in fact, it is usually found accidentally or after an osteoporosis diagnosis, or as a result of research done by a desperately ill patient.
3. Physicians are kept up to date through required Continuing Medical Education (CME), often offered and funded by pharmaceutical companies and augmented by pharmaceutical representatives. My career was in CME; I know the pressures of learning about medications. Consumer advertising of medications drives physicians to learn about high-profit medications, to the exclusion sometimes of learning about more boring, less profitable conditions like menopause, arthritis, fatigue, pulmonary disease.
4. The physicians closest to the most current research tend to be specialists where one physician  speaks an entirely different language than another, and they seldom talk to one another. The poor patient is left to carry messages, to decide which of conflicting messages to honor, or to just ignore them all. My current dilemma is how much supplemental calcium to take for my osteoporosis. The surgeon who removed my Ca-regulating parathyroid glands advised that I would need to take at least 1200mg of supplemental calcium every day for the rest of my life. Less than 3 months later, the endocrinologist who had recommended that same surgeon negated that advice. She asked that I taper down to 600mg/day calcium and turn to the osteoclast suppressor Reclast to make up the difference.  I explained all of that to her, including my opposition to Reclast with no response. I have decided to just ignore her as she has ignored me. She is still good for ordering the follow-up tests I need.

My role absolutely must be to firmly chart my own path, based on my research and preferences, to state my position (regularly) firmly and clearly. None of these is easy; an elderly female has no authority in a physician office. We are often hesitant to disagree with authority and may be slower to process rapidly spoken advice. We are not as knowledgeable about medicine. BUT we are capable of researching, seeking out other opinions, adhering to our own values and ultimately of self-education and self-advocating.

We need and can get help…family members or paid aides with knowledge and quick comprehension skills to accompany us to medical appointments. Social media is a great place to find other adults seeking to learn about their condition. Googling never fails to give us a plethora of information about conditions (although Dr. Google is frequented by “sponsored” sites without credentials so be careful). Nurse practitioners may be better listeners than primary care physicians, who are probably better listeners than specialists. Let them help you….even if it means listening to or accepting advice, testing or treatment you don’t agree with just for the sake of the relationship.

Ultimately, it’s your body. Your life. Your responsibility.