Medicine, hope and managing death
Imissed much of the healthcare debate last year. I missed a lot of things, actually, because I was largely preoccupied with my terminally ill mother. She was diagnosed with stage four gallbladder cancer late last January and died at age 67, in her apartment in New York, the day after Christmas. That she lived 11 months is considered a success by her oncologists, less because those months were marked by anything resembling a good quality of life (they weren’t) but because the average survival time for someone in her predicament is generally half that.
Not that numbers, especially as they pertained to time frames, were invoked very often during the course of my mother’s treatment. Even though they were merely a click away on Google and were grim single digits -- “five-year survival rate: 3%”; “median survival time for stage 4: 5 months” -- her oncology team, understandably, kept things vague. They said things like “everyone is different” and “if your treatment does what we hope it will, you could live a number of years.”
They meant, maybe, two or three years, and when my mother’s first chemo regime proved ineffective and the team implemented their (harsher and less preferred) Plan B, we were once again told only that they hoped it would work. When I asked to have a frank conversation about how this language squared with the survival rate data, I heard back from a nurse who was so cagey you’d think he talked only to lawyers. “I wouldn’t cancel my plans for next Mother’s Day” was as specific as he’d get. It was July.
Let me be clear: My mother received excellent care. Furthermore, I’d be the last one to advise someone with even a sliver of a chance of surviving a fatal illness to do anything but pursue the best possible treatment available. That said, my mother didn’t have a sliver of a chance. Her disease was incurable, a word the doctors were willing to invoke (after all, diabetes and epilepsy are incurable too) because they could easily add “but hopefully manageable.”
Still, from January to October, an ungodly amount of money, time and physical and emotional suffering were put toward the cause of rearranging the deck chairs on my mother’s particular version of the Titanic. When she wound up in the hospital for the third time, so weak that I’d had to jump on a red-eye from L.A. and put her in a cab to the urgent-care unit, her oncologist’s spin was this: “We succeeded in our goal of giving you more time. Much of that time has now passed.”
Should my mother have been treated for this cancer? The easy answer is “of course.” Without treatment, she’d likely have died six months earlier, and she wouldn’t have been able to attend her only daughter’s wedding -- a glorious, hastily planned affair that would turn out to be the last time she ever went outdoors.
A more difficult answer is a tentative “maybe not.” Without treatment, she might have died in August, but she also might have spent May on Cape Cod rather than in bed. Without treatment, the many thousands of dollars’ worth of therapies that weren’t going to save her life and probably not even extend it much could have been spent on someone who had a real shot at recovery.
But neither answer is an honest one. The honest answer is perhaps that the question is simply unanswerable, because even in hindsight I can’t say for sure that my family did the right thing. If we had it to do all over again, my guess is that we would do nothing different, mostly because we did what we were told to do, which was to take advantage of everything modern medicine had in its arsenal. Whether it worked was beside the point. The point was to be a responsible person -- maybe even a good American -- and try despite all odds. And what did this effort yield? An occasional shred of hope, but mostly confusion and chaos. The expensive kind at that.
It wasn’t until the oncology team passed the torch to a hospice team -- which is to say, it wasn’t until the notion of hope took on markedly different dimensions -- that this entropy commuted into something simpler and therefore more manageable.
I won’t pretend the last two months of my mother’s life were a mystical experience full of prayer circles and final amends. On the contrary, they were hell; when my mother wasn’t so restless and delirious that she was stumbling out of bed at night and taking paintings off the walls, she was telling my brother and me that she couldn’t wait to die. Still, I suspect that the hell of actively dying was in some ways preferable to the hell of the passive version, also known as treatment. I know it was for me, and I was merely an observer.
As much as my family had liked the oncology team, we grew to love the hospice team. As much as I dreaded the thought of my mother being dead, I dreaded even more the notion of her lingering in a condition that seemed barely humane. When I demanded timelines from the hospice nurse, I couldn’t help but wonder if she was underestimating my mother’s remaining days just as the oncologist had overestimated them, and perhaps for the same purpose: to soothe me.
My mother was soothed by television, which I often turned to C-SPAN because that seemed like the closest thing to having it off. As she wasted away to nothing, the healthcare debate bloomed into a behemoth. And as I administered morphine from eyedroppers and wondered occasionally what a “death panel” would say about stage four gallbladder cancer, it occurred to me that as a nation, we’ll never face up to the problems of healthcare until we face up to the limitations of medicine and, moreover, life itself. We’ll never figure out what we want from our doctors and insurers and our government and even ourselves until we figure out what we’re talking about when we talk about hope in the face of death.
And why is that so hard? Because like the doctors said, everyone is different.
