In 1991 William Hurt starred in an interesting movie called “The Doctor.” The plot was simple. A highly skilled and well respected, but egotistical and self centered surgeon gets cancer. You follow him through his discovery of compassion as he contends with his own cancer “from the other side of the sheet.” He learns much from his experience with a young woman who has terminal cancer whom he meets while getting treatment for his own tumor. She dies. He survives, but is transformed by his experience on the “other side of the sheet.” What follows is an overview of my recent adventures as a patient. Without being too heavy handed or preachy, I hope that some of the things I encountered, the thoughts, and even fears that I had along the way, may prove useful to you in some way.

 

I almost made it to my 74th birthday without a general anesthesia. It took a lot of effort to avoid the knife before I failed. Let me begin my tale by taking the chance of boring you with my medical history of surgeries avoided.

 

In 2010 I learned that old football injuries, more than 60,000 accumulated miles of running for more than thirty five years, and many marathons had wiped out my left knee. I was told that I needed a “total knee” replacement. The surgeon proved his point by showing me the xrays of my “ugly knee.” Despite two injuries to my left knee in my football days, for years I had considered it to be my “good knee” because I tore my right ACL while skiing on an icy trail at Stowe in 1981. At the time ACL repairs were not so good, and I passed. It’s amazing what you can get by with in terms of a knee injury if you just work on your quads. I ran many marathons, more than thirty, after losing the right ACL before the left knee failed me on a beautiful run with one of my sons in Pacific Grove, California. My response to the news that I needed a total knee was, “No way. I don’t have the time.” I was up to my armpits in organizational issues at the time, and incorrectly reasoned that my presence was critical. It was a good excuse. I got a few injections, an expensive load shifting brace, and started PT.

 

The PT and injections got me over the pain, so then I rode a bike and swam for aerobic exercise for the next two years. Pool chlorine takes my hide off despite all the hydrating creams and steroid lotions my dermatologist suggested I use. I was not happy riding a bicycle for exercise, so I began to walk. After a while I discarded the brace.  Last year I walked 1530 miles with no pain in the knee that I was told needed to be replaced nine years ago. I can even do an old man’s shuffling jog for six miles. I was relegated to surgical management based on x rays. A picture may be worth a thousand words, but some x rays probably tell a thousand lies.

 

Having avoided surgery on my knee, I was disinclined to have my right rotator cuff repaired after an accident in the fall of 2016. I was going door to door for Hillary Clinton who won my town by 500 votes and New Hampshire by 2500 votes. On a rainy fall Sunday afternoon I fell and tore my rotator cuff when I slipped on a wet granite walkway going around to try a side door when no one would answer the front door to hear my spiel for Hillary and the rest of the Democrats on the ballot. I could hear the Patriots game blaring from the TV in a basement den or “man cave” and was determined to give them the benefit of hearing about our great candidates. The fall made Hillary’s loss three weeks later all the more painful. After getting an MRI at the local hospital, I self referred to PT. The MRI was interesting because I think I paid top dollar. It was done through Alliance radiology. They pull a truck up to our little hospital and provide the service. It was about $2500. Blue Cross paid $2000, and I paid $500. Had I been willing to drive to Boston I am sure I could have gotten it for much less, but I was sort of interested in seeing what happens in the real world. Again, when I consulted an orthopedic surgeon in Boston, I was told that I needed surgery. My local physical therapist and I were making progress, and I was not so sure. Fortunately I am left handed and had injured my right shoulder.  

 

After politely telling the surgeon in Boston that I wanted to see about having the surgery done nearer home at Dartmouth, I asked my physical therapist to tell me which of the Dartmouth shoulder surgeons she would recommend. The young surgeon I saw was trained at Hopkins and Penn and had excellent reviews on line. He was even better in person. He listened to my stories and said that if I wanted to continue PT he would follow me along. He said that he had seen a few people with injuries like mine regain near normal function without surgery. He set my  possibility at 50-50. He agreed to follow my progress closely. I saw him three times over the next 4 months. My progress was good and when he discharged me I asked him what he thought of my result with PT. I was pleased when he said that he would have been happy with the outcome I got from PT, if he had operated.

 

You can imagine how pleased I was with myself for having avoided two major, uncomfortable orthopedic procedures by doing PT. If I had submitted to either operation I would have needed PT for a good surgical result. I got excellent results from the PT without the surgery. As you can imagine, I have expanded my personal experience to the supposition that we do a lot of surgery that does not need to be done. I would have had either operation done, my knee or my shoulder, if I had experienced persistent pain or even pain that kept me from sleeping. Those symptoms went away completely in six or eight weeks of therapy. I would also have had surgery done if it would enable me to do more, but I can do everything I want to do. Trust me, if I could run again after a total knee replacement, I would have the surgery. Running is not advised after a total knee replacement. I can do everything that I could do after a perfectly successful knee replacement. I just have “bow legs.” Do I want to have surgery just so the crease on my pants will hang straight? No way!  

 

The problem with the eighth decade is that you are regularly surprised by bodily failures that you do not want to address. Two summers ago as I was climbing out of my kayak after a successful evening of catching fish, I noticed a sudden twinge in my right groin. I did a little self exam that revealed a new bulge above my right inguinal ligament. I thought about it for a minute or so and decided that I would have to “watch it.” I did not think that PT was a good approach to what I reasoned was a direct or ventral hernia. My self exam had revealed no problem with my inguinal ring.

 

Over the next year the bulge became more obvious and the episodes of transient discomfort became a little more frequent. I could lift and carry logs, boats, and suitcases without discomfort. There were just occasional brief episodes of discomfort that seemed to occur pretty randomly. If there was any consistent trigger it was while climbing out of my kayak, so I tried new ways to roll out of the kayak. After about a year, I decided to bring up “my bulge” with my PCP during my annual health review. I revealed to her that I was terrified of “surgical mesh,” and if I needed a repair that I hoped she would refer me to someone at Dartmouth that she might know who would do it “the old way.” She trained at Dartmouth and still had contacts. She ordered an ultrasound which confirmed my diagnosis although I delayed getting it for three months since nothing seemed to be changing. I saw a surgeon in Boston at the same time I had the ultrasound who said I could wait, so I did. When I began to have my symptoms a little more frequently, I asked my PCP to refer me to a surgeon at Dartmouth who might do a repair without mesh. My fear was based on a wound infection experienced by a relative who had mesh used in a repair.

 

When I saw the Dartmouth surgeon I was examined by her medical student. She came in and straightforwardly told me that I needed a repair with mesh. She emphasized the safety and discounted my fears. She told me she would do the surgery laparoscopically as day surgery. She was pleasant. She answered all my questions, and gave me literature. I went home determined to sit it out. I filled out all the Press Ganey requests for feedback about the doctors I had seen at Atrius and Dartmouth and gave them all solid “fives” in every category. They deserved it. They had done their jobs professionally. I was just not ready to buy what they were selling. A few months passed without much trouble and then for reasons that were unclear I was suddenly uncomfortable in a new way that persisted for several days. I was pretty sure that there was no incarceration, but the change worried me so I called up and reluctantly put myself on the surgical schedule.

 

Over the few weeks while I was awaiting surgery I got frequent messages on the Dartmouth version of the Epic patient portal that prepared me for my procedure. On the day of my surgery I felt “apart from the world.” I was told to arrive at 6 AM. That was easy. We live 25 miles down Interstate 89 from the Dartmouth Medical Center so we were there and parked in less than a half hour. Unlike Boston, there is no traffic and no trouble parking. The medical center is huge, but I have begun to learn my way around. My directions from the preop Epic notes were good, and we arrived a few minutes early.

 

One thing of note that I have learned as I have become a “frequent flyer” in the healthcare system is that the first questions that are asked when you “check in” are about your coverage and ability to pay. Fortunately for me, my wife was a nurse practitioner in the cardiology program at the West Roxbury VA Hospital for many years so we are not covered by Medicare. We have Federal Retirees Blue Cross. It’s nice coverage. I guess we have what retired Congressmen and Senators get. As I pulled out my card I wondered what would happen if I was one of the thousands of New Hampshire or Vermont residents who was still not covered by any insurance. What if I was one of the thousands of undcoumented Mexican or Central Americans who are the majority of the agricultural workers in Vermont. Dartmouth sits on the Connecticut River which divides New Hampshire and Vermont and draws about half of its patients from each state. My answer to my own question was that I would be living longer with my hernia. What if I was one of those without coverage and my original fear, that I had some right lower quadrant malignant mass, had really been true, what would have happened to me? I am pretty sure I would not have been treated until I had shown up in the emergency room with a bowel obstruction or a lower GI bleed, but what kind of chance for cure would I have had then?

 

Before long I was in a hospital johnny, a little chilly, and counting my blessings that I was not the fellow on the gurney across the way to whom a resident was explaining in a very loud voice what to expect during the revision of his dialysis fistula. I could tell that he was in his late fifties or early sixties. He looked a little yellow and very tired. I wondered if he was there on the gurney because, unlike me, he had not been on antihypertensive medications since the mid sixties. He looked like he had worked with his hands all of his life. Perhaps he did not have healthcare benefits and had not been eligible for much public assistance until he had end stage renal disease. They rolled him away about the time the anesthesia resident came by to meet me.

 

In the end I saw several young physicians from anesthesia and surgery. I wanted to tell them that I had empathy for them because more than forty years ago I had been enmeshed in the same process of asking repetitive questions, getting duplicate forms signed, and presenting data to someone who was one step above me on the ladder of training. I was sorry that we had not found a better way. They were all very pleasant. I hoped that they were well rested and smart. Not long after I became comfortable in my new surroundings, my surgeon came by and told me that we were about ready to go. I watched the “milk of amnesia” (Propofol) being pushed into my IV and the next thing I knew it was two hours later, and I was back in the recovery area.

 

I was offered pain medicine, but since I had no pain, I took none. I was told that I could go home when I voided. I was also told that I had had my bladder drained by a catheter while in the OR as part of my procedure. That made sense because a full bladder might have been in the way. I reasoned that it would be a while before I could “go.” After an hour or so, I convinced the anesthesia resident that I was sure that sooner or later I would void if he would just let me go home. I told him that if there were any problems I would go straight to my local EW. I was gone before noon, and feeling like I had robbed a bank and hoodwinked the jury at my trial into setting me free.

 

By 5 PM I was getting a little nervous. I had been to the bathroom many times with no luck. I pushed some fluids. I even went out and walked a mile because I always “go” when I walk. No luck. By 7PM I was very apprehensive, and I was beginning to get uncomfortable. By 9 PM I was walking the floor in discomfort, and decide that if nothing happened soon I was going to the EW. At 10 PM I was fidgeting in discomfort in the EW. It was a sleepy place. I was the only patient, but it still took fifteen minutes of paperwork to get in. All my records and demographic info are in their computer, but it was as if I had never been there before.  I had my insurance card. What else did they need to know? One can feel like getting a little rude when urine is backing up into your eustachian tubes.

 

Finally, after what seemed like an eternity I was on a gurney waiting for the doctor. She looked at me, listened to my story, and then did a bedside ultrasound on my bladder. I wanted to ask her what she expected to find given the fact that I had not voided in over 12 hours, but I held my tongue. I was in no position to risk being considered rude in a way that would need addressing by further passive aggressive delay. Pain makes you crazy and paranoid. Despite my failed attempts to elicit sympathy she left without saying much or doing anything to relieve my misery. It seemed like an eternity before a nurse came through the curtain into the bay where I was squirming in pain with a Foley catheter. It was going to be a new experience for me as an unanesthatized recipient.

 

I should interject here that my first job in healthcare was as an orderly at the South Carolina Baptist Hospital in1964. My wage was $0.94 an hour. I made beds. I cleaned bedpans and urinals. I pushed patients to x ray, the OR, and the morgue. I helped nurses change bandages on severely burned patients. I moved oxygen tanks around. I inserted Foley catheters in men.

 

I am sure I have a penalty waiting for me in the afterlife for the pain and suffering I must have caused those men whose number I was about to join. In retrospect I probably caused a lot of urinary tract infections because I am sure I was not well trained or supervised, and my attention to sterile technique was probably somewhat attenuated. I made a down payment on that penalty that night. There was a lot of pain before I got the relief I came for, but finally, the bag began to fill as the pain I had presented with was exchanged for a new discomfort that I hoped would be temporary. As things settled down I began to negotiate. I was told that the catheter should stay in for 36 hours until, “things settled down.” I convinced the nurse that as a physician, with a wife who was a nurse, I could remove the catheter myself if she would give me a syringe and let me go home. We finally left around midnight. I was discounting the new pain that began when she inflated the balloon and taped the catheter to my leg, I assumed that would pass, and I wanted out.

 

The next two hours were the worst of the day. The new pain increased and became unbearable. I finally decided that the balloon must not be properly placed. I tried to reposition it but all I got was more pain and some blood. At 2:30 AM I pulled it all out. There was blood, but there was relief and after that things got progressively better until I got the bill for my EW visit yesterday. $657.00. $516 for “emergency room” and $141 for “supplies”. I owe only $79.53 thanks to the generosity of Blue Cross. I figure I was charged about $75 a minute for the doctor and $30 a minute for the nurse. I guess the Foley, its bag, the tape, and the syringe were $141, a considerable markup that I can assume is an attempt to cover the costs that are not covered by bad debt or the need to maintain a low volume service. My anesthesia and surgery costs were $8,272.25 for the five hours I was at Dartmouth. Fortunately Blue Cross handled all but $137.26 of that bill.

 

I did not have a serious problem. I got good care at Dartmouth from everyone I met. My problems were as much a product of my attempts to have it “my way” as they were of any defect in the system. My surgeon was very good. Despite her advice I was back at full activity in less than a week. My only complications were an old man’s urinary tract’s response to anesthesia, and an improperly inserted Foley catheter.  I got off pretty easily, but I was left wondering about the experiences of others or how I might have fared if I had not had not had an insider’s knowledge.

 

How would I have felt about it all if I had been a retired minister, school teacher, or construction laborer, rather than a retired physician? I am sure that I would have gone back to the EW a second time when the pain became more than I could stand. What if I was a young father working two jobs, with poor insurance with huge deductibles and high copays?  Would I now owe a few thousand dollars to Dartmouth and a few hundred to New London Hospital? Would I have been charged again if I had gone back to the EW after the improper placement of the Foley? Would that trip that was precipitated by a medical error have cost me even more out of pocket?

 

I could make a long list of “what ifs” that would include, what if I did not live close to an institution that is as organized and effective as Dartmouth? There are many places in “fly over” America where any care, at any cost, is at a great distance for the patient in need. I am left with the sense that even when the system is performing at its best there are substantial opportunities for improvements in how care is delivered. Even in our best institutions, with our best coverage, and for our most affluent and privileged patients there are problems. For the poor and the  disadvantaged the whole process of getting care must be so challenging that there is a barrier to care even when they theoretically have coverage. It is a challenge to try to imagine what happens to those who are as the scriptures say, “…the least of these my brethren.”

 

Back in the 80s before people like Don Berwick gave us the idea that we could use technology, wisdom, and good management to continuously improve what we do, we used to say that the system could only give us two of three desired improvements at the most, and maybe only one, if we were talking about access, cost, and quality. We had to choose. If we had better access and quality we would pay more. If we paid less we would need to give up some access and maybe some quality. If we wanted quality we would probably need to cut access and increase cost. It was a depressing pronouncement that was mitigated by the hope offered by the Triple Aim and data to suggest that we had the wealth and the capability to reach for the Triple Aim if only…

 

The Triple Aim remains a challenge and an unfulfilled promise to ourselves to use our understanding of systems, better IT, and a reconsideration of what is appropriate in practice so effectively that we get better care, at a lower cost for everyone. I am glad that I have had my experiences. I think we often do more than we should as the experience with my knee and shoulder suggest. My fellow patient on the gurney awaiting the revision of his fistula for dialysis may be an example of someone who suffers now because circumstances denied him the good routine care he needed for his blood pressure when it might have made a big difference. Now he pays in pain and suffering and we all pay in taxes and premiums for expensive dialysis that allows him to barely exist.

 

Every doctor and nurse I know can be proded to confess or complain about how the system exhausts and fails them, and it is the rare patient who has a “perfect” care experience. Sometimes mere physical and fiscal survival of an extensive encounter with the “system” is considered a triumph. We err by not providing what is needed for some, and offering way too much for others. The system can be brutal and the costs are hard to justify from any point of view other than some religiously fanatic belief in the power of some “market” to make it better. While we wait for that miracle and debate things that are almost as ridiculous as how many angels can dance on the head of a pin, real people suffer and we all bare a cost, a human cost that is incalculable, to which we are frequently blind. There is work to do and we should be looking at the work from the perspective of the damage being done to both the users and the providers of medical care. On both sides of the sheet we are not getting what we should be receiving, and we should have the collective wisdom to not wait until after we personally feel the effects of the defects to call for change.