On Being a Patient

In early December I spent four days undergoing and recovering from colorectal surgery at one of the Valley’s premier hospitals. My experience there as a patient provides a fitting basis for these personal year-end reflections on the state of health care in the early 21st Century and where we ought to focus our reform efforts in the decade ahead.

At the end of the day, it’s the outcome that counts, and it’s a blessing to be home now and on the mend. I credit this primarily to the skill of my general surgeon, one of the best in the Valley, and his team. I knew him from a previous experience in outpatient surgery, and he was the top choice of both my primary care physician and gastroenterologist as well.

Admittedly, this is where I have an advantage. My professional work connects me with a network of some of the top clinicians in the Valley. I didn’t check out the surgeon’s reputation on an Internet rating site or find out how many complaints had been lodged against him through the Arizona Medical Board. I asked my friends for advice, physicians and administrators whose views I respect and trust. I asked about the pros and cons of having the procedure performed by a general surgeon or a colorectal surgeon, the reputed level of patient care at the hospital, and what I should expect during the time I was there.

If I were one of the millions of people who don’t have access to privileged, informal social and information networks in health care, my experience could well have been different. If I had to rely on the opaque and convoluted formal system itself for reliable quality, patient care and outcome indicators on which to make an informed decision, I would have been out of luck. It simply doesn’t exist.

The first recommendation, then, for where to focus our health care reform efforts in the years ahead is a no-brainer: work to make information on quality, costs and outcomes more reliable, relevant, transparent and readily accessible for everyone.

My medical adventure began with a routine colonoscopy and an “all-things-considered” recommendation from the gastroenterologist to undergo surgery. I consulted with both the recommended surgeon and my primary care physician, both of whom concurred with the course of action. I instigated and coordinated all of this. When the surgeon’s office informed me they hadn’t received the results of an EKG, I was the one who followed through to ensure that the lab results had been sent to the proper place. No one coordinated this for me in some kind of integrated “medical home” model.

This illustrates one looming conclusion in health care now and presumably well into the future: The patient, not some amorphous “coordinator” in an allegedly integrated system, will ultimately have to be their own advocate and coordinator of care. Not everyone will have the skills, resources, knowledge or even motivation to do this. While we should continue to work on ways to implement an effective patient-centered medical home model, an even more critical focus should be educating as many patients as possible on how to be an effective advocate for their own care and acquire the personal and external resources to successfully access, negotiate and evaluate the health care labyrinth.

During my stay at the hospital, I had passing contact with the surgeon, the surgeon’s partner, the anesthesiologist, at least three resident physicians, a medical student, two hospitalists, three or more nurses, four nurse assistants, two floor administrators whose titles I can’t recall, a congenial young man who cleaned my room and the food service crowd.

Notable for his absence was my primary care physician. As he has remarked to me before, the day they began to discourage generalist physicians from following their patients in the hospital was the day they began to nail the lid on the coffin of primary care. Back in better days, he said, he was the one responsible for coordinating and monitoring his patients’ care, both in and out of the hospital. Now that care has been carved up and parceled out among specialists, such as hospitalists, who see patients only in the hospital and don’t follow their progress afterwards.

For example, I was taking a medication for hypertension prior to entering the hospital, and the hospitalist increased the dosage when my blood pressure went up following surgery. I questioned this on the assumption that most people would experience elevated blood pressure following surgery and being connected to a catheter and such, but he was adamant, explaining he “wasn’t comfortable” with the readings.

I felt like saying, “What’s more important – you being comfortable, or me being comfortable?” But I didn’t and dutifully took home a prescription for the higher dosage. As I write this, I have developed a rash, no doubt a reaction to one of the medications prescribed for me by the hospitalists and surgeons. I have called my primary care physician’s office for advice on what to do now – and he wasn’t involved in any of this.

The irony is palpable. I believe strongly that all of the people I saw in the hospital were competent, caring professionals who had my best interests in mind. I don’t fault them at all. What I do fault is a perverse system of financial incentives that results in the segmenting of care into ever more narrow functions under the purview of specialists, with precious few incentives for care coordination and integration across the continuum.

I was on my own before I entered the hospital, and I am on my own now following discharge. I’m okay with that. I have resources and connections. I’ll figure this out. But millions won’t – and can’t. That’s the tragedy of the system we have today. Surely we can do better.

I’ll close this year-end letter from the health care front with perhaps the high point of my stay in the hospital, at least for me. One afternoon the nurse came in and asked if I wanted to get my annual flu shot. A nursing student from Grand Canyon University and her instructor were going to be in the building and “could come right up.”

I agreed, and soon a young woman and her instructor entered the room. I could tell the student was nervous, but she was determinedly focused on the task and doing everything right. The instructor wisely said as little as possible and let her go about her business.

Well, it went perfectly – just like getting a shot from a veteran.

“Is this the first time you’ve ever given a shot?” I asked the student, expecting as much.

“Yes,” she beamed. “You’re my first patient.”

She looked at her instructor triumphantly. “You’re just awesome!” she gushed in gratitude.

After they left the room, I realized I had just participated in an important rite of passage. I can still see the pride of accomplishment on that young girl’s face, and on her instructor’s as well. I am glad I was part of it. And I bet the young surgical resident I saw first thing every morning at 5:30 a.m. probably felt that same feeling of pride as the chief surgeon let him suture my colon under his watchful gaze and pronounce it a job well done.

In the end, I left the hospital filled with hope. Bright young people committed to caring for others continue to go through their own rites of passage on the road of professional competence. As messy, convoluted and bloated as our American health care system is, it attracts some of our brightest, most talented people who want to make it better.

I’m betting that they will.

Feedback? Send it my way: Roger.Hughes@slhi.org.

*The Drift reflects the views of the author, and does not represent the official view of SLHI’s Board of Trustees and staff.