Sometimes the hardest part of a new situation, in any aspect of life but particularly our health, is saying out loud the scary thing.
Someone dear to me received concerning test results and asked me to help craft a set of questions for their next appointment – the very first one since getting the results electronically. I have lots of books about patient empowerment, but I relied on two favorites: Jessie Gruman’s AfterShock and Elizabeth Cohen’s The Empowered Patient.
Here are the questions I gleaned from those sources:
1) What are the specifics of my disease? What do all the terms mean?
2) At what stage is my disease? How advanced is it? How will I know if it is progressing? Is there a typical progression that you can tell me about?
3) How does my unique medical history affect the progress and treatment of this condition? Does my family history make a difference?
4) Is there anything new or emerging in the field that is promising and that I should look into now?
5) Should I see a specialist? Do you have one to recommend? How quickly do I need to get an appointment?
My friend asked if she should seek peer health advice. I played the role of Rebel Health Seeker (going out on the hunt for information) and looked at two well-known, peer-led platforms, finding what I expected: It is too early in this health journey to join a community. She only has test results, not a diagnosis.
Here are my questions for you, my community of health geeks: How often are you asked to play this role for friends & family? Do you have a set of questions, resources, and books that you always recommend?
When I posted this on LinkedIn, Jennifer Sweeney wrote: “Always get a second and even third opinion. Look into the comparative effectiveness research when thinking about treatment options. Change your care team if they don’t respond well to the questions you pose.”
Gilles Frydman advised that now “the perfect moment to get on the way to become a micro-expert. Read whatever you can about the potential condition. The day you get a diagnosis you’ll be equipped to deal with it as an already informed person and that guarantees a much greater ability to properly listen to what the medical doc/team will tell you.”
David Harlow wrote, “Get a notebook and bring it to this and every following appointment, and take notes, and note questions that occur to you later or in between appointments, as well as answers and resources. Consider bringing someone with you: a friend/ family member who may be able to complement your ability to hear clearly what’s being said and to frame questions on the spot (and to be there for moral support).”
Please share your insights in the comments.
Featured image: “What?” by Véronique Debord-Lazaro on Flickr.
re: second opinions and micro-experts.
I have a brain tumour. I’m a member of 4 different patient communities and the piece of advice that everyone receives is “Whatever you do, don’t google your tumour!”.
I googled the hell out of mine. The point of googling is not to find the answers; it’s to know enough to ask good questions.
My neurosurgeon recommended two things to me that Google (actually, PubMed) told me were wrong. I asked for a second opinion and that doctor agreed that my Neurologist was wrong. More about this in my blog linked by my name.
Anyway. So that’s my advice.
If you are the kind of person who doesn’t want to know anything and wants to put yourself in the hands of your medical team, that’s fine. Don’t google.
If you are the kind of person who wants to know, google enough to ask good questions.
Fabulous advice! Thank you, Kevin.
You are describing a Seeker, who goes on the hunt for information and does not give up. Who wants to know. Not everyone wants to — or needs to — become a Seeker. Another option is to ask someone else to do that search for you — as my friend did.
Yes. Exactly, Susannah!
Susan Woods shared an eye-opening article by Helene Epstein, hosted by the Society to Improve Diagnosis in Medicine:
Medical testing’s dirty little secret and how you can protect yourself
I plan to share this article with my friend and am grateful to have it for future reference.
Trust your guy. Patient Engagement with a Specialist is key. How they treat you is part and parcel to relationship. I have found the pedigree of the surgeon is somewhat less important than how they interact with you and respond to your concerns. How do they make you feel? I want their ego checked at the door. It is not always possible in highly specialized fields and you want ego but make sure someone on the team fills that role. A good specialist surrounds themself with people who fills in skill gaps. You want to walk away empowered and a good team will help you with that.
Great advice! Thanks, Alex. You’ve got hard-won expertise and I appreciate your sharing it.
Great conversation. It has been my experience as a nurse to have the conversation before the testing. What is the goal of testing? Is it for clarity and understanding or is it to seek treatment ? We live in the Information age, but sometimes for our mental health, ignorance is bliss. (Unpopular opinion). I found this to be true with a grandparent, who found out they had an aneurysm, but the treatment options provided came with significant risks that they did not want to pursue (and otherwise symptom free). Their mental health significantly declined with this knowledge, but nothing in their life changed and the doctor advised they could go about their life as before. But their anxiety skyrocketed.
When there is testing, I encourage others to work through a small exercise that If something is found, are there treatment options, what options are there, and would you want to take action. I’ve found that level setting ahead of time, can calm nerves. There are also multiple complexities and layers to every situation. If the person is finding themselves symptom free in the moment, I encourage people to focus on that here and now moment- then walk through and formulate an action plan. I always strongly advise that this plan be done with a medical professional and a personal advocate, and when able, someone who can help translate medical lingo.
RN 17 years: neuro, trauma, transplant, cardiac, rehab, hospice, grandparent & sibling caregiver/support, patient advocate & entrepreneur
Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described by Linxi Mytcolli, a diabetes patient advocate. Meaning: you’ve got the schooling AND you’ve been a caregiver.
“What is the goal of this test?” is a great question for all of us to be ready to ask our clinicians. “What is MY goal? What would the results mean for my behavior and choices?” are the key follow ups that you add. That makes sense to me as someone who was presented with (and declined) certain prenatal tests because the risk outweighed the “reward” of an answer that would not have changed anything for me, personally.
When NIH canceled their Rare Disease Day symposium, a renegade group convened on our own to learn and share, together. Michele Herndon of the Undiagnosed Diseases Network Foundation was the opening keynote and one advocacy tip that stuck with me was related to testing, particularly genetic testing: An earlier diagnosis can translate to cost savings for the health system (and payers) and fewer pointless treatments for the wrong diagnoses. She made a clear case FOR testing because a patient and their family definitely would benefit and may change their behavior significantly.
Thanks for sharing your perspective!