A few years ago, my wife's health was slowly degrading. She was continually getting sick, had less and less energy and was complaining of lower back pain. At times, I would hear her complaints and think, "Damn, that sounds like a heart attack." She was too young for that, though, so I pushed the thought aside. The doctors blamed her problems on a degenerative spinal condition and her smoking. One day in late May 2005, complaining of a sudden splitting headache she took a nap. When she awoke, she had severe pain in her left arm and shoulder. The Physician's Assistant she was seeing insisted that the condition in her lower back was progressing up her spine and she now had a pinched nerve in her neck. In hindsight, I look at this and shame myself for being so stupid. Two weeks later, June 8, I came out of my office to refill my morning coffee and found my wife wilted in a living room chair complaining about her left arm and shoulder, complete exhaustion and nausea. She had just made an appointment to see the doctor later in the afternoon. As she went to the shower, I called and told the doctor's office we would be there within the hour and expected there to be an appointment for us when we arrived. This was my first step in taking over her care.
When we arrived, the PA, without seeing my wife, instructed a nurse to put a sling on my wife's arm to remove the strain on the pinched nerve. They could not figure out how to put it on. The PA entered saying she had another patient that was in severe trouble; she was obviously annoyed by our demands for an appointment. We enumerated the symptoms: left arm pain, near immobility of the left hand, no energy, nauseous and heavy sweats. The nurses continued to try to adjust the sling's fit as the PA reiterated her diagnosis of a pinch nerve. According to her my wife was in too much pain and could not sleep, this made her feel ill. After some words with the PA, which I will spare you, I finally convinced her to give my wife some nitroglycerin (a vasodilator used to curb angina). Within seconds, my wife expressed thanks for relieving the pain. Without any chance for misinterpretation, I instructed the nurses to stop their work on the sling (they had been working on this now for fifteen minutes) and I turned to the PA and in a reprimanding voice asked rhetorically, "And, now what are you going to do?" Service was not high on this PA's list.
I will spare you the emotional details of the next nine hours. The net result: my wife had a MI a few hours later in the Emergency Room, went into full cardiac arrest in surgery and I was told, after the fact, that she was once again alive. If you plan to have a heart attack, the recommendation is doing it in ER, trust me.
Late that night when I visited her in the CCU, lying in bed with all the tubes and wires there are no hugs, our left hands squeezed... the same hand she could not use to pick up her toothbrush that morning. All was well. We thought.
I slept in the waiting room that night and was with her for nearly every waking minute, which was roughly twenty hours a day. A few days later, we came home. Her condition, though, rapidly worsened. Her left arm lost strength and there was no detectable pulse in that arm. After a few hours of arguing (or should I say, discussing the situation) with my wife a neighbor and I convinced her to return to the hospital less than 24 hours after being released. Frustration was about to hit with a vengeance. Doctors refused to deal with anything but the heart attack, this was her problem and all symptoms needed to be related to that cause. They would not do a MRI since the stent was only a few days old. They refused to listen to our story about the use of her hand since, "putting in a stent cannot make that kind of change." I was not about to let another medical professional stubbornly justify their theories at my wife expense.
They Just Had To Figure Out They Worked For Me
That night when I returned home, exhausted and exasperated, I looked at our three kids and said, "Okay, guys, you aren't going to like this. We are going to do the only thing Dad knows how. We are going to run this like a Red Project. I only need to convince the doctors they work for me." This change in my attitude saved my wife's life. I penciled out a communications plan for our kids and my in-laws (all remote) and gave the kids assignments. The first, make a pot of coffee... strong coffee.
How does one handle a project that is developing some high-tech gadget where you, as the project manager, are missing the required domain knowledge? You hit the internet and read as much as you can in a very short time.
After a couple hours sleep, I appeared at the hospital at 5:30 in the morning to catch the cardiologist on his rounds. After five hours of waiting, I went the cafeteria to get some food. In those fifteen minutes, the cardiologist showed up, talked to my wife and promptly disappeared from the floor. The first test of my new project manager position was to instruct the nurse to get him on the phone... now!
Hospital staff is unaccustomed to having patients, or their spouses, barking orders at them. They get used to it (hint: waste no time with the threat of escalation to charge nurses, floor supervisors and hospital administrators). Within the hour, the cardiologist called the nurse's station and once again told me how her arm movement was not a result of the surgery. I told him (as if he were an obstinate architect) I was fully aware of the contradiction and that I felt she had a blood clot in her brachial artery. My theory was her blood was getting too thick to get past the clot. The catheterization's protocol of successive blood thinners were slowly wearing off. I had been astute enough to ask why for each IV bag, shot, poke, prod and vital sign fluctuation... and I was taking very good notes. The theory had no basis in medical studies, just fluid dynamics, or better yet thinking about oil in a car on a cold day. He flatly told me I was wrong, Peripheral Artery Disease exhibited itself in one's legs first. Eventually, he assured an Internal Medicine Physician would evaluate her.
|Bags like this are drugs.
Write down the label.
Within a few hours, the Internal Medicine doctor showed up. He was cold and calculated and, within ten minutes, his exam proved the cardiologist right. My wife did not have a blood clot in her arm or anywhere in the proximity—she had one in her brain. My wife had had a stroke two weeks earlier. The cause was a little piece of plaque that broken off from a much larger occlusion that was restricting about 80% of the blood flow I her right Carotid artery. Going home as no longer an option, she was a walking time bomb. I called in-laws to tell them to get here.
The Project Sponsor
This was a project—temporary, unique and had a beginning and an end... hopefully with the correct ending. But, who was the project sponsor? My wife? The Insurance Company? The Doctors? Me? Without a sponsor, the project cannot properly define and focus on the right objectives. My wife fit the definition of the customer and sponsor, however, how would she agree with the project charter, the risk mitigation plan or any of the details? For most of this, the patient was incapable of making decisions. In fact, to this day, my wife remembers little of what happened to her, her brain blocks out the stress.
Right or wrong, the patient's advocate must function as the Project's Manager and Sponsor. The responsibility of defining quality of life resides in the advocate; they define the scope that meets the patient's needs, wants and desires. They define when the project is complete, they sign-off acceptance.
I treated this like a red project. Why did this work? It was instinctual to get on familiar ground. I could garner confidence from the fact that I had an established set of tools to use in a very unfamiliar domain. Having been in many situations with smarter, better trained, specialty prema donna's in the past, the only course I knew was to be objective, non-emotional and fact based. Look for contradictions, arrive at the simplest reason for the problem and have people refute your solution and defend theirs. This will get them to think critically about other options and their own. If all else fails, force them look at your solution. I did not realize I was doing this with the PA. It was my "strong suggestions" that were breaking her steadfast belief in her, very wrong, theory. It was continued observation and writing down facts—my wife was on Heparin, then lntegra and then Plavix. All had a different purpose, but all thinned the blood or slowed its clotting and all took over twenty-four hours to leave the body. This was the basis for the clot theory.
Organization. Creating a communication plan and laying out a set schedule was a savior. This reduced the stress by making many actions mechanical. I would get the kids up for school, give them the plan, leave for the hospital, return for lunch when the kids got home from school, give them the revised plan, go back to the hospital, come home to see the kids to bed and give them the third plan for the day. I would close my day doing research and typing up my notes on the day events. I would call only key stakeholders—my wife's two siblings and mother. That would happen while I was driving back and forth to the hospital. The rest of the family would wait until ten at night, until an impersonal bulk email would fill them in on the status.
Find your experts. I relied heavily on my wife's cousin. She was an ER nurse with a ton of experience in cardiovascular issues. She gave me hints on what to ask and how to pronounce various terms. Find anyone with knowledge and use them.
Issue logs, risk registers and meeting minutes were all maintained in a note pad provided by the hospital. Even though I pride my memory, I learned quickly to write everything down. Record it the minute it happens since the next minute may hold a new more important event. My exhausted brain needed to make room for it and would overwrite whatever thought was not committed to paper.
Decision making required well-informed consensus. Regardless of the person's stature, the team, with me as the project manager, had to agree this was the right direction. I found the one public access computer in the hospital's library, which I would use prior to any decision.
Three weeks later, we would revisit the cycle, this time much better prepared with an understanding from the start that we had the authority to tell the doctors what to do. The kids and the extended family got used to and were comfortable with the drill; we just had to train another hospital. Over the subsequent two years, this process would be implemented another six times.
What Could Have Improved
As I look back, the biggest problem is the same issue I have complained about in other articles—realization. I saw the symptoms and refused to accept them. I did not trust my gut. I had a red project long before the visit to the doctors' office, but failed to acknowledge it and take the steps to get it fixed.
The next was the initial reaction of being too emotional. I had to save that for the brief downtime when sitting in the car or lying in bed. The team needed to see me as objective and strong. Falter or waiver and the team would lose faith and not follow. I needed facts and to query... no... grill the doctors on their reasoning, make them explain their reasoning and then double check their facts. Know when to brainstorm, know when to do root cause analysis and know when to trust.
Never forget to write down the lessons learned (for obvious reasons I rarely use the term post mortem). Every doctor's visit requires a refresh of the notes, an assessment of what to do better next time and what saved time or reduced confusion in this round. It is a cold process full of facts and no emotion. Emotion comes later when out of harm's way, during the celebration of another successful project.