Perspective
You Kids
Sometimes the best medicine is stopping care.
By Lisa Freitag, M.D.
I eased the needle forward as gently as I could, but once again there was no flash of blood in the vacutainer. My patient tried to hide her wince, but couldn’t.
“Sorry,” I mumbled. There was sweat, or maybe the beginning of tears, in the corners of her eyes. I was a third-year medical student on my very first rotation, and Mrs. Lindt had been the unfortunate recipient of several of my early attempts at phlebotomy. On my first successful attempt I’d nearly dropped the filled tube, surprised at how quickly the new blood had warmed the cold glass. She had noticed, but her wise, lined eyes held only sympathy and forgiveness for my inexperience.
Mrs. Lindt was in the medical school hospital “battling,” as we put it on our daily rounds, a relapse of acute myelogenous leukemia (AML). The prognosis for AML might have improved in the 25 years since, but at the time, her chance for recovery was near zero. She had been dwindling from a frail, grandmotherly lady into a bedridden invalid for the three weeks I had been on my internal medicine rotation. Perhaps “dying from” AML would have been a more appropriate phrase, though no one would admit it.
I pulled the needle back, then slowly advanced it again. Still no blood. Mrs. Lindt had had hundreds of blood draws by now, and her veins were not in good shape. But she had another fever and her white count was low, and, even though she was already on antibiotics and had had numerous negative cultures, protocol demanded that another blood culture be done.
There was a bruise developing around the little hole I had made in Mrs. Lindt’s arm. No blood was going to miraculously come through that needle into my tube. I withdrew it and held the little white square of bandage over the spot.
During my first week, she had been able to get out bed and walk the hospital halls. I’d run into her one evening as I was heading back to my apartment. I hadn’t recognized her at first, out of her hospital room and wearing a real bathrobe instead of a faded blue gown. But she’d given me a smile, as if she was genuinely happy to see me. She may have been. I never saw anyone visiting her.
I’d looked down at my old ski jacket and the backpack into which I had stuffed my new stethoscope and still-crisp white coat. I was both relieved and a bit embarrassed to be caught out of my official role. “You recognized me without my doctor disguise,” I blurted.
The smile I got in response was one you’d give a grandchild who had delighted you unexpectedly. She’d understood my little joke, that being a doctor was a role I had just started playing and wasn’t entirely comfortable with. Neither of us could have known then that 25 years later I’d still call it that. My doctor disguise.
I hadn’t seen Mrs. Lindt out of bed since. At some point, we’d given her another round of chemotherapy, even though the previous three hadn’t had much effect on her cancer. I thought it was the only thing we could do that might help her. But the chemo had made her completely miserable. And now I was just adding to her pain by botching the blood draw. I moved around to the other side of her bed and began searching for a vein in her other arm.
There wasn’t one I could justify hurting her again to try to reach. I was suddenly furious—at myself for lack of skill, but also at my team for insisting on doing this test. I knew that the culture was barely necessary. Even if I was successful, there was only a miniscule chance it would provide any helpful information.
And I would have to hurt her again for that chance.
My distress must have been obvious.
“It’s all right,” she said with a tired smile. Her hand, as dry and fragile as a dead leaf, touched my arm. “You kids have done enough.”
It was a small statement, gently made, but it stopped my search for a vein. Partly it was how she said “you kids,” as a statement of fact, without criticism and with more than a hint of gratitude. But “kids” just the same. For a second, I saw us through her eyes, fresh-faced and eager, girded by our shiny white coats to fight a battle with death that we really didn’t understand. The phrase crystallized a sense of unease that had been hiding underneath my lack of confidence. Going into that room to draw the culture, I’d felt as though I was going to do something vaguely wrong. I had tried to talk the resident out of ordering the culture at all, but we’d both assumed that my true reason for protesting was my insecurity with doing the procedure. But I’d been right after all. The test was, in fact, a cruelty, tiny and unintended, but still an unnecessary
cruelty.
I knew, too, that she was referring to more than the blood culture when she said we had done enough. Though she would never stand in our way, she was beginning to question the necessity of everything we were doing. But I could only help her with this one thing.
I paused with one finger still feeling for the vein that wasn’t there. “We don’t have to do this right now,” I said. I had seen past Mrs. Lindt’s patient disguise and found, not a battleground on which a fight with cancer was being lost, but a woman dying with grace and dignity.
She gave me a smile, sadder but full of pride. “Thank you,” she said.
I removed the tourniquet from her arm and packed up my extra needles, cotton squares, and empty blood culture tubes. Then I went and told the resident that Mrs. Lindt didn’t want, or need, a blood culture just now.
“You kids have done enough.”
That blood culture was cancelled, but not the next one, or the ones after that. We were young, and terribly proud of our abilities and, since stopping treatment wasn’t part of our training, thought that dying was the same as losing a war. As far as I know, the thought that Mrs. Lindt might choose to limit her own treatment never crossed anyone else’s mind.
Mrs. Lindt lived another three months. By then, my internal medicine rotation was over and I was working in a different hospital, so I didn’t have to watch her endure those last few weeks.
In the end, we kids did much more than enough.
Years later, another vein was eluding me. This one belonged to Matt, who would not likely survive much past his first birthday, a week away. Matt had congenital hyperinsulinemia, and nothing that had been done to him had prevented his body from producing too much insulin. As a result of his early frequent hypoglycemic seizures, he was severely developmentally delayed. He barely moaned as my 23-gauge orange butterfly missed a nearly invisible and possibly nonexistent vein in his scalp.
I’d had two more years of medical school, three years of pediatric residency, and two years of private practice since caring for Mrs. Lindt. I had learned to draw blood from anything. Matt needed me to insert an IV, though, something I had always found a bit harder to do.
For months, Matt had required constant IV infusion to prevent sudden unpredictable drops in his blood glucose. This was in addition to the continuous OG feedings that he would need for his entire life. The home health care workers who monitored his IV had been having increasing difficulty obtaining access, which is why Matt was in the hospital. He was running out of veins. His most recent IV had infiltrated almost two hours earlier. His blood glucose, fortunately, had remained stable through attempts by two nurses and an IV tech. Now it was my turn.
Most of Matt’s medical care had been given by my partner, Dr. John, who is an incredibly good doctor, patient and kind, and had gotten to know Matt’s family well. I did not know them quite so well; but after almost a year of hospitalizations—for seizures, sedated CT scans confirming brain damage, OG tube insertion, not to mention an unsuccessful partial pancreatectomy—I’d certainly had contact with them.
Still, I’d been surprised on rounds a few days earlier when Matt’s mother wanted to take a photograph of me holding Matt. She’d already taken one of Matt with Dr. John. Matt had been dressed up for the occasion, in a three-piece black suit with a clip-on tie. It seemed a strange choice for baby clothes, but I expressed admiration for her ability to find a size 12-month black suit.
“It’s for his birthday,” she told me with a seriousness that told me she knew that this would be his only birthday, and she wanted photos to last a lifetime.
Matt was heavier than he looked, and his brain damage had left him too stiff to fold into an embrace. So holding him for the photo was sort of like holding a 12-month-old-sized log in a suit. A black suit of the sort one would wear to a funeral. I was sure my smile would be recognizable as strained in the photo.
Matt had not moved, but his mother made a quiet sigh when I withdrew the needle and started looking for another site. I found one, but we all knew that this was a temporary solution, one in a long string of temporary solutions.
The next day, Dr. John and I discussed Matt’s case and the fact that my new IV was precariously positioned.
Dr. John pulled on his lower lip and stated that we had to arrange for a central line. I knew there were no good, safe indwelling long lines for infants then. The latest thing was the Broviac catheter, which had to be inserted under general anesthesia. But it was untried—a last, desperate resort. “There’s nothing else we can do,” he said.
I was horrified at the suggestion. I looked at the floor and shrugged, neither agreeing nor disagreeing with him. But I was, unaccountably, remembering Mrs. Lindt.
We had already done too much for Matt. He was alive, but he did not walk or talk or eat or laugh or smile or even move. If there was a battle, it had already been lost. He could not tell us that, but his mother knew it when she bought that suit. Matt was going to die. A Broviac might buy him another few months, but for what? And for whom?
We were not kids anymore, Dr. John and I. We didn’t have to perform procedures because we didn’t know what else to do. We no longer had to fight a battle to the bitter end to know that we had done enough. We could recognize the point when care becomes cruelty. Matt’s mother was ready and needed only our permission to let him go.
“There is something else we can do,” I finally said. “We can stop.”
I was not part of the discussion between Matt’s mother and Dr. John later that day. But the surgery to insert a Broviac was never scheduled. In fact, when my IV finally infiltrated, miraculously not until after Matt’s birthday, another one was not started. Matt died at home in his mother’s arms a few days later. He was buried in his birthday suit, a miniature version of the man he never had a chance to become.
A few more months and one more surgery would not have changed that at all.
In the 25 years since Mrs. Lindt’s death and the 18 since Matt’s, I still have not received any formal training in when to stop. I know that some things have changed, particularly with the acceptance of hospice care. But for the most part, doing everything possible still seems to be expected.
But I am no longer a kid in my doctor disguise. I can recognize when the battle is lost. I also know that there is no formula for distinguishing between stopping and giving up, for deciding when a procedure is being done out of necessity or pride, for calculating when life has become a burden rather than a desire.
But there has been no better guide than the memory of Mrs. Lindt’s hand on my arm, teaching that it is possible to step over the bounds of enough. MM
Lisa Freitag is a pediatrician who is currently studying bioethics at the University of Minnesota. Her essay received honorable mention in Minnesota Medicine’s 2009 Medical Musings writing contest.