Perspectives

On the receiving end of care


 

It’s tough being on the receiving end of care. I’ve tried to avoid it as much as possible, being ever mindful of the law from Samuel Shem’s The House of God: “They can always hurt you more.”

I recently had several medical encounters at three different facilities, highlighting systemic problems in medical care. Fortunately, each procedure went more smoothly than the prior one.

The first was not so elective. I had some uncomfortable symptoms while exercising and, not wanting to totally be in denial, contacted my doctor to ensure that it was not cardiac in origin since symptoms are often atypical in women.

My physician promptly saw me, then scheduled a nuclear stress test. There was a series of needless glitches. Registration at the diagnostic center had me on their schedule but did not have an order. They would have canceled the procedure had I not been able to get hold of the doctor’s office. Why isn’t an order automatically entered when the physician schedules the test?

While I was given the euphemistic “Patient Rights” brochure, asking to have reports sent to a physician outside of the University of Pittsburgh Medical Center empire is apparently not included.

The staff canceled the stress test because I was not fasting. I had received no instructions from diagnostic cardiology. They suggested it was my internist’s responsibility.

I deliberately ate (2 hours earlier) because my trainer always wants me to eat a light meal so I don’t get hypoglycemic during our workouts, and an exercise stress test, is, of course, a workout. The nurse practitioner said that they were concerned I would vomit. I offered to sign a waiver. She parried, saying they would not be able to get adequate images, so I was out of luck.

When I expressed concern about getting hypoglycemic and having difficulty with the test if fasting, the tech said I should bring a soda and snack. Who tells a “borderline” diabetic to bring a soda?

The tech also said she had called our home to give instructions but encountered a busy signal and had not had time to call back. I had not left the house during the prior week (or most of the past 2 years), so this was a pretty lame excuse.

I suggested to the administration that the hospital offer to email the patient instructions well ahead of time (and perhaps ask for confirmation of receipt). If calling, they should try more than once. They should also have patient instruction sheets at the physician’s office and perhaps have them on their website.

It turns out that the hospital mailed me instructions, not on the date it was ordered, but with the postmark being the day of the procedure itself. With Trump donor Louis DeJoy in charge of the U.S. Postal Service, mail across town now has to travel to Baltimore, 3 hours away, be sorted, and returned.

I did finally have the stress test, which was reassuringly normal. I was not surprised, given that the fury I felt on the first attempt had not precipitated symptoms. The hospital sent a patient ombudsman to meet me there to discuss my previous complaints. I have no idea if they implemented any of the changes I had suggested. In 2021, when I urgently had to take my husband to the ED, I couldn’t see the sign pointing toward the ED and had to ask for directions at the main entrance. They said they would fix that promptly but still have not improved the signage. How I miss the friendly community hospital we had before!

Next was trigger-finger surgery. I had developed that in 1978 from using crutches after a fall. I figured that the relative lull in COVID and my activities made it as good a time as any to finally have it fixed. The surgicenter was great; the surgeon was someone I had worked with and respected for decades. The only glitch was not really knowing how long I was going to be out of commission.

The third encounter (at yet another institution) went really well, despite some early administrative glitches. My major complaint was with the lack of communication between preoperative anesthesia and the operating room and the lack of personalization of preoperative instructions. Despite EPIC, medicines were not correctly reconciled between the different encounters, even on the same day!

After about 15 years of diplopia, which has been gradually worsening, my eye doc had suggested that I consider strabismus surgery as a sort of last-ditch effort to improve my quality of life.

Anesthesiology has stock instructions, which they made no effort to individualize. For example, there is no reason to stop NSAIDs a week before such minor surgery. That’s a problem if you depend on NSAIDs for pain control. Similarly, nothing by mouth after midnight is passé and could be tailored for the patient. I felt particularly inconvenienced that I had to go out of town for the preoperative visit and then have a redundant preoperative clearance by my physician.

The nurses in the preoperative area made me feel quite comfortable and as relaxed as I could be under the circumstances. They had a good sense of humor, which helped too. And from the time I met him a few weeks earlier, I instantly liked my surgeon and felt very comfortable with him and had complete trust.

I was pleased that the chief anesthesiologist responded promptly and undefensively to my letter expressing concerns. I do believe that he will try to improve the systemic problems.

The best part: The surgery appears to have been successful and I should have a significantly improved quality of life.

Hospitals could do so much better by improving communications with patients and by viewing them as customers whose loyalty they must earn and will value. With monopolies growing, memories of such care are quickly fading, soon to be as extinct as the family doc who made house calls.

Dr. Stone is an infectious disease specialist and author of Resilience: One Family’s Story of Hope and Triumph over Evil and Conducting Clinical Research: A Practical Guide. She disclosed no relevant financial relationships. A version of this article first appeared on Medscape.com.

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