Please Talk about Me When I'm Gone

Conversation (1)

(July, 2002)

Eventually, we asked: What should we expect?

Well, we can't know for certain, they said. But at this stage you should probably begin to consider end-of-life options.

And can you point us in the right direction?

Certainly, they said. After all, we literally deal with this every day...

...

This is a conversation that never occurred, and it's one entirely too many families won't get the opportunity to have. Having not had the pleasure, I feel I'm in a safe position to suggest that, tempting though it may be, this predicament cannot necessarily be placed on doctors or even the system. Certainly, some surgeons and oncologists are better equipped than others (on human as well as professional levels) to conduct helpful-or at least honest-discussions regarding options, percentages, and prognoses.

...

How much time have I got? That's the big one, the most crucial, if feared question each patient eventually, inevitably asks. And if they can't-or won't-bring themselves to give voice to the concern that rips like a current through every part of their consciousness, it's up to the family to make the inquiry on their behalf. We didn't want to know, but we needed to know. We had the right to know, we felt.

Questions: Were we prepared to process it, whatever the verdict happened to be? Wouldn't the doctors tell us, finally, when it was time to confront the final stage? Isn't it our obligation to provide care and distraction, and let the professionals do what they're taught to do?

And so on.

Naturally, these questions have no definitive answers. Or worse, the answer to each one is-or can be-yes and no. Depending on the patient's age, or situation, or the doctor's preference, or competence, or conscience, there is probably never an adequate formula for combining truth with commiseration. Speaking only from personal experience, the worst news you can receive is not the bad news you abhor, but a deferral disguised as an alternative.

On July 20, 2002, the doctors operated on my mother for the final time. They didn't even try to remove the cancer; it was too widespread. We knew, then, that it was no longer a matter of if but when. How long have we got, we asked in direct-and especially indirect-ways, thinking (if we admitted we were thinking it) we might have a year with her, maybe only six months. It was apparent, then, and even more obvious, now, that the issue was not how much they knew but how much they didn't know. For all they knew, it could be a year-a miracle could occur, my mother might make medical history. And so, they declined and demurred and filled my parents' heads with words like "quality of life" and, unbelievably, chemotherapy. My mother, not knowing the truth, and my father, not yet wanting to confront it, began to embrace this potential course of action as one last bulwark against the unimaginable. As long as we're in motion, we're still in control: this is what I heard every time I looked at my father's face. None of us, including the doctors, could know that in a little over a month the most important question would answer itself.

It would be too easy to insist that our doctors were negligent or, at least, woefully indifferent. The reality, I suspect, is even worse than that. Obviously doctors don't want to give false hope or obliterate any remaining optimism, but the rationale for their institutional code of silence may in fact have more to do with us than them. Our country's capacity for denial is well documented; it's more likely our ever-increasing penchant for litigation that gives them pause. When the going gets tough (and the going is always tough in cancer wards), we pray doctors can perform tasks far beyond their human abilities. Even after the surgery (successful or not) has occurred, we expect these people to become priests, social workers, and saints.

Still: you want answers. Aside from comfort and serenity, those are the hardest things to come by when you're dealing with terminal cancer. No one knows anything and you get the sense that even if they did know-especially if they did know-they're not going to tell you.