No One Is Free from Harm: Dazzled by coordinated care, frazzled by navigating the post-acute wilderness alone

I just turned 69, and after enjoying a lifetime of radiant good health, I underwent five complex surgical episodes in the last 2½ years. In all five encounters, I got superb surgical care. I have fully recovered and returned to my busy life.

What I learned from these five encounters is that the patient's journey does not end at the hospital door.

What used to happen is you'd have a weeklong hospital stay, with a lot of that time focused on recovery, rehabilitation and educating patient and family about post-operative risks. Now with short stays, you may end up standing on the hospital curb in less than 24 hours, hurting, drug-addled, and holding a sheaf of discharge instructions, with family members uncertain how to help you.

The key to a great outcome is not just great care in the hospital, but the willingness of clinicians and the hospital to assume responsibility for your recovery. In my five surgeries, there was huge variation in the degree to which the crucial post-acute phase was scripted and managed effectively.

When I was diagnosed with throat cancer on Christmas Eve 2014, I decided to go to the “best place in the country” for my care, 600 miles from my home in Charlottesville, Va. The preoperative evaluation and technical quality of the surgery at this academic health center were outstanding. However, post-operative pain control issues added five days to the expected three-day hospital stay. I lost 17 pounds and a huge chunk of muscle mass.

I later talked to the surgeon and the hospital CEO, and they pledged to make changes.

On returning home, an avoidable post-operative complication resulted in my losing the use of two fingers on my right hand, necessitating a complex peripheral nerve-grafting procedure. For this I went to another academic center, the “best place in the country” for this specialized type of surgery. Again, I experienced spectacular pre-operative evaluation and surgical care.

But I also experienced an even sharper discontinuity in supervision of my recovery, both in pain control and rehabilitation. I got a sheaf of discharge instructions and four days later I'm flying home. They gave me exercises to do, but it wasn't obvious who I should call if something went wrong.

I eventually self-referred to a local hand-focused occupational therapy team back home in Virginia—as well as seeking help from local orthopedic surgeons—to regain full use of my hand. When issues arose eight months into my recovery, I wrote to my hand surgeon to get guidance about how to proceed.

After these medical tourism experiences, when my left hip failed at the end of 2015, I found a brilliant young orthopedic surgeon in Charlottesville. I chose her because she had scripted the entire hip replacement surgery encounter from diagnosis to successful walking and returning to normal life. She employed a “rapid recovery” protocol, the tightest and most thorough protocol I'd ever seen. And she hovered over the entire process in real time by text and instant message.

I walked on my new hip one hour after waking from anesthesia, and I was out of the hospital within 24 hours. The next morning my doorbell rang and there was a physical therapist to teach me how to exercise and walk on my new hip. That afternoon there was a home nursing visit focusing on wound care, stroke risk and watching for infection. These visits went on for a week.

There was so little pain that after about a week, my son took me to Wal-Mart and while walking back to the parking lot from the pharmacy, my incision opened and my leg swelled badly. It scared the crap out of me. So I texted my surgeon a picture of the wound. Within 90 minutes, a veteran orthopedic nurse arrived at my house to examine, clean and dress the wound and reprove me for putting my leg at risk.

The rehabilitation was similarly tightly scripted. It was effortless for both me and my family. The surgeon had thought of everything. It was dazzling. Three months later, I got a chance to praise her work to her health system's CEO and board. She's since gotten five referrals from me. She replaced my right hip 13 months later.

Finally, this past July, I flew across the country for spine surgery and had five cervical vertebrae fused. What was impressive at this hospital was not only the surgeon himself, but the physician's assistants who prepared me for surgery.

I also met the entire pain control team before the procedure, and the pain control was thorough and well-planned. They carefully prepared me and my wife to deal with post-operative issues. They had it down to a science. I saw firsthand why this hospital is a national center of excellence for neurosurgery. Six weeks post-op, I was back in the gym, slowly restoring my energy, aerobic condition and muscle tone.

Overall, I was inspired by what happened to me during all these experiences. My urgent clinical problems were addressed skillfully, and I was heartened by the teamwork in the care I received.

But, absent a script, the post-acute phase of a complex surgical episode can be a wilderness for patients and families. That's where I found the most variation and frustration.

I have 40 years of relationships and experience in the healthcare system, and I still ran into serious difficulties. That means many patients who lack my system knowledge are potentially being exposed to poorly managed transitions of care.

In my public talks, I address the cultural change that health systems will need to make in order to fix this problem. I show a picture of jazz great Miles Davis, because the clinical culture for people of my age was that complex medical care was like jazz, a succession of improvised solos, knit together by the beat. It was a craft, not a science. The surgeon was the featured soloist, whose interest in the patient's case often fell off sharply when he or she walked out of the operating suite.

Then I show a picture of the Santa Fe Opera, with dozens of people on stage. How can all those people make such beautiful music? The answer is the libretto and musical score. The new medicine requires creating a libretto for the clinical experience, and the clinical team working together with the patient and family to execute it.

This culture change is also a generational change. Only three of the people who touched me during my five surgeries were over the age of 40. The concepts of team-based care and rigorously planned care transitions are not a tough sell to younger people.

Patients should decide where to go based not only on the reputation of the surgeon, but also on the degree to which there is a plan for, and ownership of, the post-acute phase.

With my hip replacement and cervical spine procedures, it wasn't ambiguous who the quarterback was. My talented young surgeons were firmly in charge of the whole episode.

But if your provider just gives you and your family a short briefing and printed discharge instructions, sends you home and says call this number if you have a problem, they are not there yet.