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• W2056554069 abstract "It wasn’t just jaundice—all the doctors in the family knew it, including Dad. Yet no one said it aloud—that he was going to die—until we were forced to by circumstances and time pressures.My family is rife with physicians and nurses: my father was a renowned internist, his brother an internist and educator, my brother a cardiac surgeon, his wife also an internist and educator. They all worked together in a mid-sized urban hospital—all except for me. Some might think this a gift when a family is struck by serious illness: when we mobilized our resources to get the best treatment for Dad, we were surrounded by professional peers who were also family members. After all, it must be lonely to be the only doctor in a big family coping with its patriarch’s serious illness—no one to share the burdens of knowing too much and making painful decisions.But that’s not what happened in my family.To be sure, there were whispers of pancreatic cancer early on, but circumstances and the cast of players involved in his care initially encouraged denial, even for the doctors in the family. Dad looked well and missed very little work while awaiting the definitive diagnosis—he’d recently returned to the hospital after a brief attempt at retirement. I focused on the dwindling scraps of hope that remained and pushed aside the rational voice that was built on years of training and experience. But even after the diagnosis was confirmed, we all downplayed its gravity: my father, the physicians involved in his care, and the physicians in the family. When breaking the news to my siblings, I found myself omitting or tweaking critical facts—not exactly lying, but dissembling and evading—not intentionally, it just came out that way. This was in the 1990s, long before Patrick Swayze and Steve Jobs—when pancreatic cancer was little known to the general public, allowing me to paint an unduly rosy picture. I felt compelled to reassure, to let family and friends cling to hope as long as reasonable—sometimes longer.Then Dad decided to undergo a modified Whipple. The primary tumor was removed and he tolerated the surgery well. The news was all good…except for that one positive node. Yet the surgeons, my father, and I mentioned that fact only in passing. Though I had interpreted the node result as a very serious finding, I did not communicate my concern to the rest of the family. Instead, they heard only the extremely hopeful views of his doctors, who were also his colleagues. The pressure grew, creating a kind of moral sandwich, where I found myself squeezed between relating upbeat versions of his condition and guarding the grim truth I had yet been unable to tell anyone. I consoled others, but found no consolation for myself in anything I did.Ultimately, the pressure seemed unbearable, and I felt angry at the other docs in the family for leaving all the heavy lifting to me—or so it seemed. I needed to talk it out, but I felt lay people wouldn’t appreciate my situation. After a long day in clinic, I let it all out to a colleague who was neither a relative nor a co-worker of my father’s. My father is going to die, I said aloud for the first time. This became the first of many long talks with physician friends over the next year. Because they were doctors, I didn’t need to explain about pancreatic cancer; because they were friends, I didn’t need to explain what my father meant to me. I didn’t need to gloss over survival rates and side effects, I didn’t need to peer into their faces to assess their feelings so I could adjust my story accordingly. Finally I had some relief from the solitary tug-of-war inside my head, and some companionship.The timing was critical: midway through chemotherapy, Dad started to feel intensely weak and ill, and it seemed that the chemo was not helping him. Up to then, my father had often asked my opinion, and I had gladly obliged; he then made the final decisions himself. But now he was tired and depressed, and he wanted me to decide for him. The oncologist had no strong opinion; good data was scarce and the literature provided no clear answers. Family and friends started to treat me as the decision-maker—despite being the youngest and least experienced of the physicians in the family. Again I felt pressure from two sides: I felt strongly that he should discontinue the chemotherapy, but I did not want to be held responsible for the aftermath. I didn’t want my family, or my father, to think that I gave up too soon, or that I should have recommended any of a thousand other options that would have saved his life. I wanted to be able to share my knowledge and insight without being seen as the expert.I had learned my lesson; there was no returning to the loneliness I’d felt early in the process, so this burden was shared. The “family physicians” talked among ourselves and then with other family members. Together, we decided to seek advice from outside the family. So we piled into a big, comfortable car and drove several hours to consult with a national expert. He advised stopping the treatment, and we did so. When family members returned to me, asking (sometimes demanding) my opinion, I limited my role to that of interpreter or clarifier of another doctor’s recommendation: “This is not my area of expertise, but the specialist says….”Around this time I also learned to sidestep the burden of being designated by the family (whether explicitly or implicitly) as their spokesperson and intermediary with Dad’s doctors. At first I thought this role would be bearable—I’d just serve as a channel for communication. But in actuality, many doctors just didn’t know how to talk to me in my capacity as a family member dealing with a painful situation. They were often more direct and technical than was necessary or helpful—addressing the left side of my brain when the right side was the one struggling to cope.I also noticed that my family members were sometimes more adept at voicing concerns than I was. At times, I would blow off a family member’s question when I thought it was off the point, irrelevant, or unnecessary. Later, I realized that even if that were true, my reaction was not helpful, and I learned to let the non-physician family members ask the questions and clarify later if necessary.Ultimately, my experience with my father’s illness and death was just the first of several in my family. In the years that followed, I found that these same themes and corresponding lessons emerged again and again, and I had the opportunity to practice these skills—stepping back, avoiding conflicting roles, deferring to those in official roles, clarifying and supporting rather than taking control. It hasn’t been easy and has often been painful. But the alternative—taking control within the family, making difficult decisions alone, foregoing the input of others—is often counterproductive and, even worse, can have long-lasting, painful emotional echoes and repercussions." @default.
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• W2056554069 date "2012-07-04" @default.
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• W2056554069 title "On Being A Physician…When You Wish You Weren’t" @default.
• W2056554069 doi "https://doi.org/10.1007/s11606-012-2124-3" @default.
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