My cousin Caroline just turned 50. She has been reflecting on recent experiences with the healthcare system and suggested I write about healthcare consumers in her age category.
As a woman with a career, two children approaching their early teens, a husband, parents, and in-laws with recent issues requiring hospitalization, her first thought when she noticed some physical changes of her own was, “Who has time for this?”
Fortunately, she did not ignore her symptoms and sought care from a specialist physician with whom she has had a long-standing relationship.
Your Fifties Are Not Your Thirties
In the interest of preserving her privacy, I am not going to share the specifics of Caroline’s diagnosis, other than to say that it was serious and a bit of a wake-up call for her.
Further, and since both her parents and in-laws had developed conditions that required major life-style changes, she reflected on what might evolve in her own health when she reached their age. She shared that her natural inclination to not make time for exercise and healthy eating could make a significant difference down the line regarding the development of chronic medical conditions and disability. She knew it was time to make some changes in her family’s household!
She also realized that reaching out for help was not a source of weakness, but a strength. All of us in her family care so much for her that allowing us to know what was going on and assist in any way we could was not only helpful to her, but to us, too. We could demonstrate our love AND share our expertise, taking away our feelings of helplessness. She’s not sure she would have recognized this when she was younger.
Relationships and Communication
It is so important to establish and continuously cultivate relationships with our physicians. Identifying the most efficient way to communicate in-between appointments is critical, because you never know when you might need their help.
Caroline sent an email to her physician and received an immediate response. Her physician, knowing that Caroline does not always put herself first, recognized that her reaching out meant that she was concerned. That led to an urgent appointment.
Caroline learned, however, that email is not always the preferred method of communication with a physician. Unlike email, Patient Portals are secure, provide a permanent record of communication, and allow other members of the physician team to respond quickly and appropriately in providing care.
Questions to Ask Every Time
When Caroline first described her symptoms, her doctor was quite certain about her initial diagnosis. Fortunately, Caroline and I had talked about the work of Dr. Jerome Groopmanand how, when preparing an agenda for appointments, one should always plan to ask the following three questions:
#1. What else could it be? This combats search bias and leads the physician to consider a broader range of possibilities.
#2. Is there anything that doesn’t fit? This combats confirmation bias, leading the physician to think broadly.
#3. Is it possible I have more than one problem?Individuals can have multiple, simultaneous disorders that can cause confusing symptoms.
These questions led to recommendations for diagnostic testing. Sure enough, the initial diagnosis proved to be incorrect.
What and Whom to Listen To
Although she reached out to close friends and family, Caroline initially kept the circle small and made a conscious decision to consider her own opinion first regarding proposed treatment options.
As is true on so many topics, those with whom we share our concerns bring their own experiences and opinions to the discussion. Listening to too many points of view can be overwhelming, particularly when trying to assimilate new, and sometimes anxiety-provoking, information.
Caroline recognized this and made clear and concise decisions about what she was and was not willing to do. When she was younger, the opinions of others may have led to second-guessing.
What to Read
When educating herself and preparing for her appointments, Caroline sought out websites recommended by her physician, as well as some other sites I suggested (e.g., Up-to-Date).
She stayed away from those that include advertisements and focused instead on sites that provide clinical information derived from reputable research and that contribute to the development and continuous improvement of evidenced-based clinical decision support.
Overall, this helped her to outline her specific questions and led to meaningful conversations with her healthcare team. I loved seeing how she took charge!
In-Patient Experience
Overall, Caroline’s in-patent experience was positive. She was in awe at how streamlined the processes were, something she was particularly thankful for, since the pandemic meant she had to be alone.
But there were a few encounters that did not go so well. One involved feeling very rushed by a nurse to perform a bodily function that her body just wasn’t ready for. She knows now that she could have politely pushed back and asked for a greater explanation and more time.
Second, she unexpectedly had to go home, requiring her to perform a function that is usually done in a hospital by trained nurses. Here, the education and support were not the best and again, in hindsight, she realized she could have been more assertive.
Listening to Your Body
Lastly, Caroline acknowledged that her body is not as strong as it was when she was in her thirties; recovery would take longer. Even though slowing down was not something that came naturally to her, she listened to the advice of her physician and gave herself the time necessary to gradually improve, adding lots of stretching into her daily routine as well (and catching up on lots of Cobra Kaiepisodes along the way!).
Giving yourself time to heal is something I coach people about all the time — especially following a surgery that requires general anesthesia. It sounds so simple, but listening to our bodies is not easy for many of us (myself included).
Summary
I was so grateful that Caroline agreed to be interviewed for this newsletter. She shared that a conversation we had early on in her journey helped her tremendously, and she is now relaying it to others. Here is what she said.
“Acknowledge the anxiety you feel with a new medical diagnosis. Figure out what you can get answers to and work on getting those answers. Recognize that while there are unknowns, if you can learn five or six things out of ten, you have more control than you think. The rest of the answers will come in time.”