I had the great privilege to address an audience of a thousand residents from my community who have been participating in a decade-long study of the development of dementia. I can’t say enough about how selfless such participation can be. Over the years, these study participants have been questioned and tested and scanned and interviewed, all in the name of science and the quest to discover the precursors of a horrendous condition that takes away memory.
After all the researchers presented their data, I was on deck to talk about lifestyle options and interventions that may slow the course of this nightmare (and I’ll save that info for another post soon).
But here is today’s unexpected lesson for me.
Instead of unleashing the horde of participants on the crowded parking ramp at our local civic center, the large venue chosen to accommodate this group, the organizers set up tables in the lobby with flowers and professional name placards on white tablecloths. Attendees were invited to stop and talk with the presenters.
I was escorted to my table, and I found a long line of people. Certainly I was gratified to talk with them.
But the questions they asked provided a snapshot into the concerns and the souls of everyday patients seeking care. Let me give you some examples, and you will see the questions and concerns are more about navigating an uncertain healthcare system and more about being an empowered patient—a message I have been proclaiming for decades myself:
A sixty-four-year-old gentleman had been blind in one eye since age five when he was hit with a shotgun pellet. He adapted very well with his normal left but was devastated when he was told that he needed a high-risk cataract extraction in the remaining eye. If the surgery did not go well, he would be blind. A local ophthalmologist advised the procedure as did another ophthalmologist at a nearby medical center. He still was uneasy and didn’t trust these providers. A third opinion at a major medical center assured him the vision in his eye was almost normal. He did not need the operation. The lesson: trust your own judgment; seek further guidance. Sometimes doing nothing is the best choice.
This woman, age seventy-two, had a highly virulent malignant cancer arising from her neck in the middle 1980s. She had aggressive and meticulous surgery and follow-up and all remained well. The doctor who following her did thorough X-rays or the appropriate imaging, routine blood studies but, in particular, a careful hands-on face-to-face physical examination involving the surgical site and adjacent lymph nodes. The provider was no longer available to her (doctors retire; some are out of network), so she sought follow-up at another major medical center. Her care there was not what she was used to. The doctor never even inspected the surgical site, no hands-on exam. She lost trust in that organization and never returned. The lesson: you need to feel comfortable with your care and your provider. If you are not happy, move on.
One participant showed me a slick brochure for a local dentist who specialized in gum disease. He was told he needed extensive (and expensive) surgery with no guarantees of improvement. He just trusted his gut and didn’t feel comfortable with the plan. I suggested he appropriately seek a second opinion. The lesson here is obvious.
Another one of the attendees was a friend whom I had worked with. After we shared the usual pleasantries about our lives, she pulled down the neck of her sweater to show me the top of a long scar. She had felt fully well when she went for a routine physical. Her doctor noticed a heart murmur and she then commented that on several occasions she was slightly short of breath. She promptly underwent a number of studies that resulted in a quadruple vessel bypass for blocked blood vessels to the heart as well as a mechanical aortic valve. I asked her if this was a difficult decision because she felt well. And she quickly said, “No, because I completely trusted the organization as well as the surgeon. I knew they would take good care of me.” The lesson: it's all about trust.
So what are the important lessons from the meeting for us as patients seeking answers to complex issues?
No one has a greater stake in your health and well-being than you do.
We have a responsibility to ourselves and our families to be aware, to be inquisitive and to question.
We need to understand the pros, the cons, the risks, the benefits, and the alternatives of treatment or surgery. It’s a fair question: What happens if I do nothing?
No one provider can know it all so be confident to seek another opinion, another recommendation. And this does not mean firing off your medical records to some guru on the other side of the planet that you found online. There is no substitute for that face-to-face hands-on physical examination by a concerned professional.
Trust your gut feeling, trust your intuition. If it does not feel right, if we are not comfortable, if we feel rushed, if we feel we are being sold X, Y or Z, that is the time to gently move on.
So there I was to provide advice on lifestyle, and I was the student who learned from those who patiently waited in line to share their stories with me. I cherish these unexpected lessons.
Image from Shutterstock.
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