Although I was given a dry, leathery corpse to dissect in anatomy class in my first term, our textbooks contained almost nothing about aging or frailty or dying.
The purpose of medical schooling was to teach how to save lives, not how to tend to their demise.
I had never seen anyone die before I became a doctor, and when I did, it came as a shock. I’d seen multiple family members—my wife, my parents, and my children—go through serious
life-threatening illnesses, but medicine had always pulled them through. I knew theoretically that my patients could die
of course, but every actual instance seemed like a violation, as if the rules I thought we were playing by were broken.
A few years ago, I got a late night page : Jewel Douglass, a 72-year-old patient of mine receiving chemotherapy for metastatic ovarian cancer, was back in the hospital, unable to hold food down.
For a week, her symptoms had mounted: They started with bloating, became waves of crampy abdominal pain, then nausea and vomiting.
Her oncologist sent her to the hospital. A scan showed that, despite treatment, her ovarian cancer had multiplied, grown, and partly obstructed her intestine.
Her abdomen had also filled with fluid. The deposits of tumor had stuffed up her lymphatic system, which serves as a kind of storm drain for the lubricating fluids that the body’s internal linings secrete.
When the system is blocked, the fluid has nowhere to go. The belly fills up like a rubber ball until you feel as if you will burst.
But walking into Douglass’ hospital room, I’d never have known she was so sick if I hadn’t seen the scan. “Well, look who’s here!” she said, as if I’d just arrived at a cocktail party.
“How are you, doctor?”
“I think I’m supposed to ask you that,” I said.
She smiled brightly and pointed around the room. “This is my husband, Arthur, whom you know, and my son, Brett.”
She got me grinning. Here it was, 11 at night, she couldn’t hold down an ounce of water, and she still had her lipstick on, her silver hair was brushed straight, and she was insisting on making introductions.
Her oncologist and I had a menu of options. A range of alternative chemotherapy regimens could be tried to shrink the tumor burden, and I had a few surgical options too. …
Surgery risked serious complications—wound breakdown, leakage of bowel into her abdomen, infections—but it was the only way she might regain her ability to eat.
I also told her that we did not have to do either chemo or surgery. We could provide medications to control her pain and nausea and arrange for hospice care at home.
This is the moment when I would normally have reviewed the pros and cons. But we are only gradually learning in the medical profession that this is not what we need to do.
The options overwhelmed her. They all sounded terrifying. So I stepped back and asked her a few questions I learned from hospice and palliative care physicians
hoping to better help both of us know what to do: What were her biggest fears and concerns? What goals were most important to her? What trade-offs was she willing to make?