When public policy meets private patient by Marjorie Arons-Barron

“She’s just been moved into recovery,” the nurse told the obviously concerned husband of the patient. “She came through it well,” she added reassuringly. “I think you should know that her first words after coming out of the anesthesia were ‘ is the trump administration over?’”  The nurse and my husband laughed, and she added, “I think your wife was having a nightmare about working for the Trump administration and trying to escape.”  “That’s Margie for you, and the price for being a political junkie,”my husband told the nurse.

Neither general anesthesia nor post-surgery pain medication is an adequate antidote to Donald Trump. But last Monday’s hospitalization for rotator cuff surgery brought a host of reminders about the centrality of health care as an issue in our lives.

First, a shout-out to the nurses and other staff  at the Newton-Wellesley hospital, an affiliate of Partners. They were with me every step of the way. Naturally, I interviewed them about last fall’s referendum on nurse-patient ratios. My informal sampling split about three to one, with only one thinking that legislating the ratios was a good idea. The others said they didn’t want government to make the nursing decisions and thought that flexibility was important so management could deploy resources where they were needed.

One of the mandates of the Affordable Care Act was to improve care through inter-operable uniform electronic medical records. But silos remain, with patient records in Beth Israel Deaconess, for example, not readily available to Partners hospitals and vice versa. Even within hospital systems, problems remain.

I started writing about the difficulties in 2016. Of particular concern was the computerized network sold to Partners by Epic Systems, which drove many older doctors into premature retirement. Never were its flaws more exposed than the day I checked into the hospital. It was 6:15 in the morning. I didn’t pay much attention to the fact that people at the desk were just writing patients’ names on a piece of paper and handing us a “comfort call,” the kind of light-and-buzzer device restaurants use to signal one’s table is ready

There were nine patients and family members settled in the waiting area when an attractive woman in pale blue scrubs came in to announce that the entire Partners computer network was down, including the Mass. General, Brigham & Women’s, Newton-Wellesley, doctors’ offices, other Partners hospitals and satellite offices, and that all surgeries had been postponed for at least several hours.  Cancellations were a distinct possibility, and some patients rescheduled.

Ah, yes, Epic Systems network, the bane of existence among so many doctors and medical personnel. Apparently another meltdown had happened in January and had lasted for six hours. As it turns out, last week’s crash had started at 3:00 a.m. so perhaps it would only be a few additional hours’ delay.  Still, as they say in the financial world, past results are no guarantee of future performance.

After two months of  constant pain, I had finally arrived on the threshold of my appointed surgical solution. Two vacation trips had been cancelled along with other meetings and events, and the idea of indefinite postponement did not sit well. Other patients in the Partners system were even worse off.  I learned of one woman, for example, who had expected to have open heart surgery at Mass General the previous Wednesday, but complications in four other open heart surgery cases affected the capacity of the ICU and required the postponement of her surgery, which was then was rescheduled to last Monday. Thanks to the computer system, she was to be postponed once again.

I was fortunate in that sometime later that day my surgery did take place, and now I’m starting a long recovery. I’m lucky that I have a great surgeon, solid health insurance, excellent care-giver at home, and my shoulder problem is fixable. I’m one of the fortunate ones and am mindful of those who lack these essentials.

We live in one of the great medical centers of the world, and I’d like to think that glitches in the computer systems could be remedied with the same high level of professionalism. Technology is wonderful when it works, which is probably most of the time. But when it comes to medical care, “most of the time” just isn’t good enough.