Writing in the New York Times on October 7, Bill Keller’s touching essay “How To Die” confirms a regrettably consistent reality regarding end-of-life care (the before, during and after of how we die): opinions about it, indeed cognizance of it, is often limited to those who have had direct experience with a loved one’s struggle.
As many friends and readers of this blog know, I have direct experience with such a struggle: my mother’s ultimately losing battle with colon cancer, a disease that took her life just over ten years ago.
As many friends and readers of this blog know, I’ve spent the last couple of years working on a memoir entitled 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.
I strongly recommend reading Keller’s piece, because it is short, not-so-sweet, yet appropriately matter-of-fact. Here is the crux of this tale’s “before”, the dilemma (how, when?) that patients and, just as often, their desperate families confront:
When they told my father-in-law the hospital had done all it could, that was not, in the strictest sense, true. There was nothing the doctors could do about the large, inoperable tumor colonizing his insides. But they could have maintained his failing kidneys by putting him on dialysis. They could have continued pumping insulin to control his diabetes. He wore a pacemaker that kept his heart beating regardless of what else was happening to him, so with aggressive treatment they could — and many hospitals would — have sustained a kind of life for a while.
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.
*excerpted from a memoir entitled Please Talk About Me When I’m Gone.