Melissa Walton-Shirley

Disclosures

April 17, 2015

It's 2:43 am. I have just returned from the ICU. Moments earlier, I had stood behind a dutiful daughter who sat at the bedside holding her mother's hand. She watched as I slipped a magnet onto her mother's device to hold at bay the inevitable ICD shock. As I was entering the DNR order on the computer next door, the night supervisor ran by me yelling "Vfib arrest."

"No shock," I directed. "Do nothing," I said as I waved her off. The nurse dutifully stood down.

The daughter Katherine* wept silently at first, but as finality, cold and indifferent, replaced the warmth of her mother's hand, pain leaped out. The darkest fear of every child had just become a reality. I draped myself over her shoulders and held her tight for what seemed like 5 minutes. Though I could not shield her from the pain, nor could I share it on the same plane, we commiserated in what is a loss for both of us. She was the daughter of 50 years. I was the cardiologist for over 16.

Anna* was a beautiful, genteel Southern woman who had the misfortune of contracting rheumatic fever as a child. She was a former smoker with coronary artery disease, mitral stenosis, severe mitral regurgitation, diabetes, and eventually renal failure. At first, there were the standard therapies: valve replacement, coronary artery bypass surgery, and peripheral vascular intervention. This plan buoyed us for 13 years, but after a decline in left ventricular function followed by a complicated and futile percutaneous coronary intervention she acquired a defibrillator.

For nearly two decades, I had pieced her mother's care together like a patchwork quilt, selecting procedures from different tertiary centers as well as our local venue. We were winning one battle at a time until a few months ago. We replaced the kidneys with dialysis, transfused her for iron deficiency, and would have considered a ventricular assist device (VAD), but there is really nothing for a geriatric failing liver so it would have been futile. When I saw ascites for the first time, I knew . . .

She entered the ER tonight with a blood pressure of 59/40 mm Hg. Just moments prior to her death it was 106/70 mm Hg; a pirate's victory, won with phenylephrine and fluids. Primary pump failure with no plan for a VAD and no option for repeat revascularization proved once again an ugly process. The prerequisite jugular venous distention to the angle of the mandible, crimson ear lobes, and cyanotic fingers signaled the end. Thankfully, she was in no pain. There was no thrashing about or gurgling. She was quiet and peaceful.

I was surprised that she opened her eyes when I spoke to her. Despite cachexia and the brawny complexion of renal failure, her eyes remained beautiful, blue and bright. Her skin was smooth, and her lips and smile had escaped the ravages of her disease.

I heard her voice for the last time, when she asked, "Where is Katherine?" "She just stepped out to make a call, she's right around the corner," I replied. I asked her how she was feeling as I tucked the scratchy hospital blanket around her neck.

For the first time ever, she admitted, "I'm not doing so well tonight." For a moment, I wondered if she really recognized me or whether she was just continuing in that mode of politeness that was her essence, the part of her that I knew would never fade.

With my hand on her shoulder, I gently whispered, "I turned off your defibrillator so you will not get a shock and there is morphine if you need it. Let me know if you are uncomfortable."

"I will," she said as she shook her head yes.

As she closed her eyes in resignation, I questioned my telling her about the defibrillator. I knew, though, that she had trusted her daughter to be her advocate and me to choreograph the medical aspects of her care. In her final moments, she trusted us to coordinate the subtle nuances of her death.

It sunk in that this was our last conversation; the end of 16 years of office visits, decisions, discussions, family conferences, informed consents, referrals, and finally dialysis. We failed in our recent woeful attempts to steal fluid from an intravascular space desiccated by a greedy and thirsty abdominal cavity. Although distended with ascites, she was desperate to have smaller legs, to breathe, and to live. Was the blessing of the plan for dialysis my only misstep in the direction of her medical care? It had not hastened her demise, but it had not helped one iota. I think it was a comfort to her to have another option to consider. Perhaps I had become too close to deny her this one request.

On the drive home, I realized that it wasn't just Anna that I would miss. I will also miss Katherine. I had developed a deep respect for her intelligence. Though she's never studied medicine, she's a quick student of pathophysiology. Her understanding of her mother's disease process was nothing short of genius. She could recite her intolerances and had memorized her medication regimen. She was not a follower in her mother's care. She was a leader. She trusted me implicitly but challenged me on occasion so that I would reexplain something. She needed to completely understand every plan. I often told her that she should do things in such a way that she would have no regrets. Yes, I would mourn the absence of my patient's daughter, a presence in my practice life that had become a comfortable routine.

As the nurse began detaching the leads and turning off the monitoring devices, there was a moment of awkward silence. For reasons I don't understand, I blurted, "Diabetes is a terrible disease. . . . as is rheumatic fever," to which the daughter said, "As is cardiomyopathy." I smiled because this layperson knew as much about the treatment and physiology of cardiomyopathy as any healthcare provider. We were both teacher and student of that process from two very different perspectives. Because of that, her mother had a complicated but great 16 years.

I've thought of quitting this noble profession a million times. It has become a pervasive notion; a part of every waking moment on my worst days. Our group, a once-cohesive and loyal band of brothers and sisters, has changed. EHR is a self-perpetuating, efficiency-busting nightmare and is responsible for more stupid medical errors than I can count. It has killed access to outpatient medical care, ground previously efficient schedules to a halt, and discouraged physicians to the point that retirement has become more attractive than fighting the daily fight. The hospitalist movement, though a blessing to a busy physician's office schedule, is a dark veil between in-patient and outpatient care. There are lots of reasons to quit.

Although many days I have walked into work with the same enthusiasm as a death-row inmate, tonight I was needed. I helped make an impossible tragedy as tolerable as possible. I was wanted, necessary, and loved as a healthcare provider, and I was respected.

The daughter stood to gather her things and prepare for the lonely drive home to tell her father of the tragic news. She and her family have yet another illness to navigate. Her father has been diagnosed with cancer.

"You have been so good to us for so long. I want to thank you. I don't know what we would have done without you all these years," she said as she hugged me again.

"It was you and your family that have been so good to me, and I thank you," I replied, knowing that answer was completely inadequate. I could never convey well enough the fact that I didn't know what I would have done without them.

At that moment, I reembraced being a physician. I had navigated well an overwhelming spectrum of illness with a patient and her family. Two decades previously, they had been set out on the waters of uncertainty. I helped them find their way.

Tonight, perhaps they had helped me find mine.

*Names have been changed; this story is told with permission from the patient's daughter.

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