In medical school, the importance of monitoring vital signs, labs, and disease markers was drilled into our brains. When these numbers were sub-par, we were told to advise folks to “eat less processed food,” “get more exercise,” “take your meds as prescribed,” etc. It becomes easy to fall into the trap of treating the humans sitting across from us in the exam room as the total of their labs and vitals. But for many patients, other factors are just as important. Some cannot easily eat well or bathe themselves, so they ask their PCP to find home health care to assist them with food shopping, meal preparation, laundry, and basic housework.
The PCP’s office must find an agency, the PCP must document in what ways the patient needs assistance, and then insurance determines how many hours of home care will be paid. Often the covered number of hours differs significantly from the time the patient requires. Rhetorical question: How does this gap get covered?
I don’t understand why the PCP is part of this certification. Insurance doesn’t cover me visiting a patient’s home and verifying they need help as claimed. Requesting assistance; inviting a stranger into one’s home; admitting the indignity of needing someone to assist with bathing, toileting, etc. is difficult. My patients are not scamming the system.
Imagine having no family or friends you can ask to help you with matters like these. Or not wanting to ask for fear of burdening them. So, at your next doctor’s visit, you summon your courage, and just as the visit is ending, you manage to explain that although you raised several children and worked productively, now, for a myriad of reasons, you need help.
Labs and vital signs leave so much of a patient’s story untold. We need a new set of medical questions, starting with: “How do you spend your day?” Many patients spend their entire day in bed, mindlessly watching television, alone.
We also need to ask about activities of daily living: “How do you get food?” “How do your clothes get washed?” “How do your meals get prepared?”
My patients heartbreakingly have shared some of the answers: “A neighbor goes to the store for me once a month.” “I only get takeout fast food.” “I keep a bottle in my bedroom because I can’t get to the bathroom in time.”
Imagine an affordable, accessible, stimulating co-living space for those needing such assistance. I would sign my loved ones and myself up for that!
Pam Adelstein
Newton, Massachusetts
5 thoughts on “Questions That Need to Be Asked”
These stories are heartbreaking and too often the health care worker doesn’t listen. Thank you for documenting this.
To add in the patient perspective for the same lab/training issue, I’ll offer the experience I just had an appointment a month ago with a new PCP. When looking at my weight and labs, she assumed that I didn’t eat healthily and told me how I had to change my diet. She never asked what I actually ate each day! If she did, she would have learned I am mostly low-carb, gluten-free, and that I cook almost all from scratch with little salt. So, her preaching to me to lower my pre-packaged salt intake and not eat carbs when “thinking about my holiday food plan” was infuriating and demoralizing. A menopausal woman who has been fighting hormones for 5 years and the same 15 lbs over those same years needs to be able to say, “I don’t eat a lot of salt and carbs” when her labs don’t look right. And, had I not been rushed out of the office, maybe we could have explored whether there might be bigger issues at hand. So, although I don’t fall into the category of needing help from others at this stage, I completely agree with you that it would be wonderful if (some) practitioners learned to look beyond stock answers to lab work! 🙂
100%!!
So sad. We have very good insurance, and yet, it only covered minimal hours when I broke each of my hips 5-1/2 months apart, or each arm fracture (2 years apart) and multiple pelvic and sacral fractures. We were fortunately able to pay out of pocket for additional hours when needed.
I can’t imagine how difficult it is gor your patient population.
so frustrating, Karin!!