This post takes some excerpts from my memoir Please Talk About Me When I’m Gone.
While this project is an attempt to commemorate –and celebrate– my mother’s life, it also concerns itself with the often uneasy interstices that comprise the before, during and after of how we die. More, it is a (hopefully, sufficiently subtle) call to arms, a (hopefully, sufficiently humble) petition to combine insight and compassion for collectively waging a more effective assault on this –and by extension any– disease. More still, it might function as a (hopefully, sufficiently altruistic) j’accuse documenting all the things my family and I struggled against: ignorance, apathy, lack of understanding, etc. The essence of the story –the essence of any good story, the imperative of art– is to share perception and accrue knowledge, admit what you did not know to help someone else recognize what they should learn, and communicate awareness through empathy.
In my family’s case, we never had the proverbial moment of truth, a benevolent intervention by the professionals who are paid to tell us how and how long. From a chapter entitled “Fairy Tales and Feeding Tubes” (recently posted in full on the site), this awkward confrontation with reality –a situation that arrived when alternatives ceased to exist– is depicted:
She could not have known her life would now be measured in weeks instead of months. None of us knew.
Here’s the thing about acceptance: we all had time to prepare and adapt. My mother, finally, after opening every door and stumbling down every last alley, had no other choice but to accept. Sometimes the choice makes itself when there is nothing left but a choice that will make itself. She finally accepted where we were and what was coming.
Even with the best of intentions we waited too long to bring in hospice. We did not understand that at a certain point even a single day is too long. In shockingly short order, her body had deteriorated to the point of its final betrayal: she could no longer digest food.
“Your body can no longer digest food,” my father said as we all stood around the bed, confronting the moment that, after all denials, medical interventions, and best wishes otherwise have failed, arrives at last. The only comfort is that at least it’s not a doctor telling her; at least she is in her own home.
There is an extended section of the memoir, covering several chapters, that honestly, if unflinchingly describes how we gained the knowledge we now have, and how hard-won it was to acquire. These brief chapters are a bit more didactic, albeit infused with (hopefully, sufficient) artistic import. In some regards, although the impetus throughout is on recounting and exploring the story of one woman’s life (focusing, inevitably, on how it ended), the so-called takeaway –at least in its author’s eyes– is that anyone who encounters this material might be a bit better informed and therefore equipped to do what they can, with kindness and charity, to ease the transition with a minimum of needless suffering.
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 is 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 is 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 are taught to do? And so on.
Naturally, there are no definitive answers to any of these questions. 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.
When they were unable to successfully operate, in July 2002, we knew it was no longer a matter of if but when. How long have we got, we asked in direct—and especially indirect—ways. 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 or it could be six months; there could be a miracle, 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 are in motion, we are 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 little less than 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 do not 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 is 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 do know—they are not going to tell you.
Terminal illness –and how best to process it– is not remotely an easy to discuss, describe or resolve dilemma. The primary issue, it seems to me, boils down to awareness (which, come to think of it, applies to virtually every situation): it might be easy to blame the doctors or the system, or even the families, but we are currently ill-equipped to have open, honest discussions about treatment options vs. realistic scenarios, and in America especially, our one-two punch of denial and deference to authority leads to many well-intended instances where pain and suffering is prolonged in the name of hope.
Doctors talking about death are not unlike priests describing the horrors of hell: there is the air of presumptive jurisdiction, but also an aloof conviction, almost pitying, that affirms it’s not a place (death, hell) they’ll ever find themselves. We cannot despise them for this: without these affectations that eventually become ingrained, they could not conceivably perform their functions. Their comportment suggests that they have seen many of the things we pray to avoid, and have become intimate with horrors we can hardly imagine. In order to acclimate, they must first fortify themselves.
Physician, heal thyself?
It is understandable that so many of us assume doctors, who have more of everything—knowledge, money, connections—are able to take care of each other in ways their patients cannot conceive. If this were indeed the case it would be comforting in a way. At least we would have irrefutable evidence that solutions do exist and we might look forward to one day employing them ourselves.
But the reality, if less polemical, is nevertheless enlightening. According to a growing field of first-hand testimonials, doctors do in fact tend to die differently, but not as a result of special or preferential treatment. The ultimate, paradoxical disparity lies in an intentional demurral of treatment. Less last-ditch cycles of chemotherapy or illusions of a few extra months—itself a proposition that begs the complicated question: does more time with more adversity (physical if not mental) seem in any way appealing?
This phenomenon, which could simply and accurately be described as acceptance, illustrates several things. The most revealing might be the consequence that doctors see enough avoidable anguish they are disinclined to die in denial when their own diagnoses stare back at them in black and white. Aware of how little can be done, and able to measure the difference between best intentions and bottom lines, some prepare accordingly. In the process, perhaps they are able to provide a measure of peace—and not the opposite—for themselves and their families.