Three years ago, an anonymous doctor sent Clint a four-year membership to the American Medical Association and concurrent subscription to
JAMA (
The Journal of the American Medical Association). These issues arrive weekly and Clint, amidst all of his studies and now clinicals, has found little time to do more than glance in their direction before tossing them out. I, however, cannot bring myself to waste good literature without reading at least a few articles.
Every issue contains a section entitled
A Piece of My Mind. If ever you wondered what thoughts permeated the minds of intelligent doctors, this is the place where you may catch a glimpse. This week, I read a column written by a physician in Chicago, who specializes in surgical intensive care. His piece is labeled
The Other Side. It's not the other side of what I call "real" medicine, i.e., quackery. It's not the other side of life, i.e., death. It's the other side of being a doctor; it's what it feels like to be doctor and patient simultaneously.
In his very eloquent essay (reprinted below), Dr. Tung shares how his intuitive side interfered with his professional instincts in caring for his dying father. Read on for a taste of
JAMA and a new way of viewing end-of-life care. I trust you will not be disappointed.
. . . . .
The Other Side Do you know what they called me for?" The nephrologist looked at me, his expression serious, his shoulders slumped. We sat at my father's bedside. He had been admitted two days previously with fatigue, jaundice, anorexia, and a liver riddled with tumor on abdominal CT scan. My dad had received some sedation that afternoon and was sleeping, but I was not. I had briefed myself on the likely diagnoses for his tumor and knew that a cure was near impossible. I did not know, however, how much time he had left. My family and I had brought him to the hospital to explore that possibility.
The question seemed straightforward. Despite hydration sufficient to noticeably worsen his ascites, my father's urine output had remained low, and his creatinine level had steadily risen. He was clearly in worsening renal failure. I guessed that the nephrologist had visited us to discuss placement of a dialysis catheter, continuous or intermittent approaches, schedules, and thresholds. I was no stranger to renal failure. As a critical care physician specializing in surgical intensive care, I routinely care for extremely sick patients: those struggling to breathe with newly transplanted lungs, recovering from valve surgery without sufficient energy to sit up, or battling infection with burns over more than half of their bodies. In many of our extremely high-risk patients, we consider renal failure almost a necessary price to pay for nursing the heart and lungs back to health after a new organ, valve, or graft.
For all of our patients, and particularly the ones who had received a transplant, our philosophy was clear. They had voluntarily undergone expensive, complex surgery, or received that rarest of gifts: a transplanted organ. In return, we would fight to the end to honor that commitment. For us, withdrawal of support was considered only when maximal life support therapies themselves had failed. When such discussions were needed, I had come to accept that no matter how rational and realistic our previous discussions had been, families normally require several days to come to terms with the idea. Even when we had carefully set realistic expectations during a patient's care, families are rarely able to acquiesce immediately when asked to consider end-of-life care.
But after more than a decade caring for critically ill patients, I thought I was different. Surely such a decision, if necessary, would come easier to me than to those less familiar with the limits of modern medicine. And we did not seem close to having that type of discussion. Since kidney function could be replaced with a machine, was not a decision to dialyze merely a way station on the road out of the ICU? The "cost"of doing business? I was ready to explain dialysis to my dad and my family in exactly that way: as a required prerequisite to the chemotherapy or radiation therapy that would allow him to, however briefly, return home again.
After a brief silence, the nephrologist continued: "They called me to diagnose hepatorenal syndrome." And suddenly, with those seven words, I realized I was not different at all. I immediately saw that to my dad's physicians, the question was not whether we would agree to initiate a (relatively) common form of life support, but rather whether we would agree to withhold it. The medical logic was discouragingly clear. My dad did have that combination of hypovolemia and liver failure that presaged hepatorenal syndrome. If his renal failure was in fact hepatorenal in origin, it would be practically irreversible. And, if his renal function was not likely to return, no reasonable chemotherapy would be possible, and thus no chance of shrinking the tumor. And, if the tumor could not be stopped, death would rapidly ensue. In that case, was there any point to dialysis at all?
In a way, the physicians caring for my father were subtly suggesting that his condition was not treatable, even with palliative chemotherapy. That he would likely die during this admission and should be allowed to do so without enduring the adverse effects of chemotherapy. In the words I imagined they had used on rounds, life-extending therapies such as dialysis were "not indicated."
The nephrologist softened the blow by informing me that the diagnosis of hepatorenal syndrome was not yet definitive. But my intuition and analytical thought processes had already begun an anguished internal struggle. I had cared for patients with hepatorenal syndrome before and knew the terminal implications of that diagnosis. Clinically, I had to admit the diagnosis was likely. If so, then a smooth passage into the night was not only the choice with the least suffering, but the choice my father had told me previously he would want. As a physician, I had been in many meetings where I had outlined similar sentiments to grieving families; recommendations that life support not be escalated, that blood not be given, that pressor doses be capped. Rationally, it made complete sense.
But intuitively, those thoughts were foreign. Were we not even going to try? He was only 73 years old and had been traveling abroad just 2 months before. Even if this therapy prolonged his life by only 6 more months, wouldn't that now be a lifetime of opportunities? Couldn't my dad be in that 10% of patients who respond to chemotherapy? And if so, why not dialyze him to allow that possibility? My entire professional career I had seen critically ill patients as a challenge. Was it now right not even to make an attempt? Could the future be predicted so easily?
I was familiar with these conflicts between my intuitive and analytical selves. Clinical ICU practice is full of conflicts between expert clinicians and research findings about which monitoring strategies to use, what therapeutic goals to target, and how best to deliver an extremely complex type of medical care. I had always rationalized these cognitive "disputes" as a product of the imperfectability of clinical trials and the cognitive "illusions" of human intuition. But this conflict was different. I was simultaneously on both sides of the fence: physician and patient, understanding the vanishing likelihood of meaningful survival and struggling to define the meaning of "meaningful." As I sat down to explain to my sisters and my mother that there was likely nothing we could do, and that the most humane option would be not to treat his renal failure (and thus not even try to treat his cancer), I wondered: could I be as assured as I usually was with these issues? My dad had told me that he would not want treatment if "there was no chance." But what did that mean?
Over the next two days, my dad's renal failure became more pronounced. Together, he and my family chose not to pursue aggressive care. And, early one gray morning, his breathing stopped, his heart stopped soon thereafter, and he passed away. But our ambivalence did not. Had we done the right thing? Did we appropriately honor his wishes? Respect his life? Although we put up a confident front to family members and friends, we were much less so inside.
Half a year later, we still think about the choices we made, and we wonder. And I now understand much more fully how families can see hope in even the most dire of situations, and how even when they clearly understand the inevitable, inexorable outcome, they still need time to think, to grieve, to allow the analytical to slowly, quietly, painstakingly convince the intuitive about the "right" thing to do.
Many times before I have rounded with my team on patients clearly in terminal stages of illness, and listened to residents marvel at the reluctance of families to let go of hope, accept the overwhelmingly likely outcome, and experience the anguish of a departed soul. How difficult the process was. And at times I have quietly agreed, amazed at the tenaciousness of human hope, and bewildered by the inefficiency and illogic of investing so much mental and physical effort in what was statistically a losing cause.
But I don't anymore. I recognize how easy it is to know, but not to believe. How hard it is to translate statistical truth into human truth. And I understand that these refusals to believe, albeit transient, are vital to being alive. That in some small way, a world where intuition always agrees with statistical reality, and where convincing families to withdraw care is easy, may just be a little bit colder than the one we live in. Avery Tung, MD
Chicago, Illinois
JAMA. 2007;298:722-723.
The show 'n tell happened on my co-op day, so I watched Nicole show the picture to the class, who was sitting Indian-style in a giant circle. I thought she would tell why she loved him or share a cute story about him, but she simply stated, "This is me with my brother Grant." I guess that's enough. You should have seen the other children with their objects. You could tell that these were their prized and most beloved possessions. Just Grant being selected says it all.
