Ideas. Lessons Learned, and Occasionally, Opinions


It's not a feature! It's a bug!

On April 11, 2018
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Dear Reader, To understand this essay, please first
watch the video on which I here comment. 

Let me be clear at the outset: it was Terrance's prerogative to make his end-of-life decisions as he saw fit. It was his prerogative to include his wife Amanda in those decisions apparently as co-equal partner during the long final chapter of his life. With that firmly in mind, let's consider what she has to say about that journey.

In this Ted Talk film (“We need a heroic narrative of death”, October 15, 2013), Amanda Bennett is a fine story teller, occasionally poetic in her own voice and concluding with a quote from and for the ages. There are nuggets of utility in here and her final thesis -- there is a way to have a courageous and graceful goodbye -- is imperative to absorb. Her narrative has an almost connect-a-quote corniness about it despite its obviously heartfelt and sincerely sorrowful nature. However, because most of us know that a long and gradual decline is how we will die, Ms. Bennett's notion of "hope” is flawed, despite some utility.

She says "hope is part of our DNA as humans" but inaccurately and unhelpfully conflates acceptance of her husband’s approaching death with "you're prohibiting me from hoping." Her statement, "it's not a bug, it's a feature," is an intellectual sleight of hand that serves no one because she and her husband were, in fact, in profound denial that Terrance would soon die until the final six days of his life.

Again she says, "[I hoped], you might say irrationally, that I could keep him alive forever." I do say "irrationally" because hoping for what one can reasonably know is impossible is denial. That circle can't be squared. Although Bennett insists she was “redefining hope", in reality she kept extending a singular definition of hope (in this case a cure) until it was long-past possible. There is nothing in her narrative to suggest she was "redefining" hope.

She continues by asserting that "what the experts call denial I call hope." False. Once again intellectual and emotional sleight of hand. "Redefining hope" actually means that hope exists until we take our last breath or until our loved one takes her last breath. But, and this is the necessary and essential notion, hope changes. Initially we hope for a cure. Then, when we know that a cure is impossible, we hope to live until our daughter's wedding or our trip to Norway is complete or we finish painting the boat, or . Then, when that hope is fulfilled, or becomes impossible to realize, our hopes change again, until the final hope is to die in the presence of our most treasured loved ones in peace and in as little pain as possible.

That is what redefining hope looks like.

Here is one more example of the sleight of hand she practiced on herself: She claims "our system isn't built to accommodate it [hope and a graceful goodbye]." Actually, there were systemic accommodations available for Terrance and Amanda and they proactively chose to reject the most obvious one, the services of hospice. That's a textbook, Brittanica-grade example of denial.

Amanda and Terrance's correct response to his oncologist's assertion that "better days are ahead" was "I'll discuss that with my rabbi or priest or spiritual leader. As for you, medical profession, tell me the truth, please. Do so with warmth, compassion, humility, and sorrow for me and what you cannot achieve, but just do it."

Indicting an entire group of people is seldom efficacious and never fair but for expediency I do so here: The medical profession is flagrantly wrong to use phrases like "there's nothing more we can do for you” (the dying person) because there is always more we can do for a dying person. It may be true that there is nothing we can medically do but there is always something we can do to achieve Ms. Bennett's goal for each of us "… bid her farewell the Alexandria you are losing."

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