And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me.”
- 2 Corinthians 12:9
I have had an unusual summer, at least for me. I took time off. I unburdened myself of most work and all volunteer obligations. Reset my family expectations of me (and mine of myself). I would like to say that wise acknowledgement of the need for life balance led me to this place, but in fact I had no choice. After a spring of declining health and a hospitalization, I needed to focus on regaining my strength and rebuilding my health.
Thanks to my hematologist/oncologist, who, because he deals mostly with cancer patients seems more focused on supporting patients through treatment in a holistic way than my other doctors, set me up with home nursing care including IV fluids and iron, I was able to function again while waiting for my new biologics to start kicking in. I cannot say enough good things about home health care – attentive, responsive, convenient, safer from an infection control standpoint, and much more cost-effective. The two months of home health cost me and my insurance company less than $500 compared to the $7,000 that the 1.5 days in the ER and “observation room” in the hospital where I received the same interventions.
Of course, as a recovering patient advocate, now feeling a bit more spry, although slightly limited by my midline catheter for prolonged IV access, and with time on my hands, I could turn my attention to reforming the system that landed me, a highly activated adherent patient, in the hospital in the first place. Thank you to everyone who read my May 14 post, Cumulative Burden. Consider this the next chapter.
I wrote a lengthy letter to my hospital, detailing (respectfully) my specific concerns about safety, infection control, HIPAA violations, access and use of data, and communication loops, with my recommendations, and after giving my gastroenterologist the courtesy of reading it first, I hand-delivered the letter to the chief of medicine and the heads of transplant and GI. And then I waited, and waited for a response that never came.
Ok, so the first letter I had started “as an unsatisfied patient of your GI, transplant, and immunology services . . .” The second letter, sent after being ignored for 35 days, began, “as an attorney with a significant social media presence . . . I will require your response on [date] by 5:00 pm EDT”, and was sent to the CEOs of the hospital and hospital system. That got a response. Why, though, did it need to go that far? And aren’t they lucky that I was (and am) more interested in collaborating to improve care for myself and other patients than in exposing and shaming them for shoddy care?
Note to hospital execs: If you get a letter like this. Answer it! Pick up the phone and call the patient or patient family member who took the time to write and gain a potential brand ambassador (and avoid a potential lawsuit and PR crisis to boot).
With this new dialogue, we have been able to establish the following:
- Yes, I was put in the “observation room” inappropriately given my immunosuppression status and need for bathroom access.
- Yes, the way that the “observation room” adjoins to the resident’s conference room where they are putting together treatment plans for all the patients on the floor does pose HIPAA problems since the patient in the “observation room” can hear everything.
- Yes, I could have been admitted directly to the floor, saving the ER costs and infection exposure.
- No, there are no patients on the board of the hospital or hospital system. (That will have to change.)
- No, there is no patient and family advisory council, although there was just a launch meeting to develop one. (Yes, I do plan to be on it!)
- Yes, a new patient advocacy VP has just been hired with experience from the hospitality industry as well as a hospital background. (I will be meeting with her in October.)
- Yes, we can find a way to bring all my doctors together in one place and time to discuss an integrated care plan for me. (This is scheduled for next Monday so stay tuned.)
So as I face the fall, this post-Labor Day concentration of activity until Thanksgiving, healthy enough to win the Tour de France (no yellow jersey for me, though, given the load of banned substances flowing through me), I take with me from this summer a few lessons:
- Just say no. It is ok to take a step back to be able to take 2 steps forward. Everything will not fall apart if I say no to commitments for a while.
- Patient advocacy begins at home. I need to press my medical “team” to work better together and not be satisfied until we have optimized my health, not simply accept being out of crisis or functioning ok. Home health may also need to be a continuing option and I am not ashamed to use it if I need it, rather than soldier on suboptimally. Only when I am in great health can I be of great use to the larger patient community.
- Don’t take no for an answer. If the system does not work for a patient like me, it is certainly not working for other patients with fewer financial, time, or health literacy resources. Once I stopped glossing over the gaps in care (because my physician husband and I could fill many of them ourselves for me and I wanted to move on to do other things) I was able to see how to truly be helpful to other patients at my institution and respectfully, I cannot let the doctors and hospital execs refuse to change and improve or slow-walk the process. Its time has come. People’s lives depend on it.