The Care and Management of Mortality

Dr. Atul Gawande's Being Mortal: Medicine and What Matters in the End provides healthy doses of reality - the realities of disease, deterioration, debilitation, decline, dementia, dependence, despondency, and demise.

From those dreads, we might be prompted to imagine a Valentine's "gift" - taking the time to discuss, with loved ones, what really counts when the days begin to count down.
Gawande's marshalling of data, his interweaving of interviews and personal histories, and his descriptions of care-giving innovations prompt readers to interrogate themselves. Tested are our respective aptitudes for answering tough existential questions. For each reader, the book (especially the concluding three chapters: "Letting Go" - "Hard Conversations" - "Courage") prompts poignant self-examinations.

While in no way dictatorial or insistent, the book had me thinking more and more deliberatively about what I would want for whatever months, weeks, days, and hours I might have left to me - in what will, hopefully, be a distant future.

A sense of the senses

My self-examination "test" results were clear: There are things I don't want my kids to see and hear; there are things that I don't want them to have to smell and touch. There are things I don't want them to witness - and there are things that I probably don't want to suffer and endure.

To his credit, Gawande does not inject batches of morality. He advocates for dignity: self-determination that has the patient weighing the benefits and consequences of medical interventions and prolongings - while the patient still has the faculties to weigh the options.

By relating what he has observed and what he has felt (as a surgeon and as the son of a father suffering diminishing health) Gawande informs us of downsides: In addition to chronicling choices that have provided relief and calm; he notes choices that have led to remorse and regret, for patients and loved ones.

The trappings of decline and dependence

Most of us have regimens, set ways, preferences, as to how we want to live. As we age, most of us will have to amend and adjust. For example, there may come a time when it's advisable to incorporate bathroom grab bars, shower chairs, and sitting-height toilets in one's home in order to continue to live somewhat independently.

There's nothing indelicate in Gawande's accounts of these adjustments. We learn from the decisions others have had to make. By their adaptations, and their resignations, we contemplate what would be involved in staving off the worst while trying to live on - "on our own terms."

What can be preserved even gained, when there's no fix let alone a cure

Gawande's accounts got me thinking more pointedly about conditions that would compel me to finally accept that my body has mutinied and has sounded full retreat. His accounts got me to imagine how I could be reconciled to losing it - assuming my mind hadn't already abandoned me.

For me, such prospects were overlaid onto the travails of patients whose predicaments Gawande relates most sympathetically. Every few paragraphs I would mull - If that were me, what would I choose to have done to me and for me? What would I choose not to have done to or for me?

I began to imagine "break points": Would they come when I can no longer brush my teeth? adjust my pillows? relieve myself and clean myself, unaided?

The dread of diminishment

Without being alarmist, Gawande provides eminently readable (engagingly personal) case histories and life histories that are instructive, without being preachy or pedantic. They provide a forecast of physiological and emotional turbulence brought on by a variety of disturbances: some things get hard (arteries); some things get loose (bowels); there are leakages that result in the soiling of bed-sheets and garments; there are clots and blockages that can't be resolved permanently. These combine with diminished hearing and eyesight; diminished mobility and balance; diminished respiratory and kidney function; and diminished cognitive abilities.

Gawande's case histories are especially valuable in documenting the fadings, failings, frailties, falls, and infirmities that amount to an "accumulated crumbling." More valuable still are Gawande's cautions: candid ruminations about procedures and treatments - interventions - that can bring on new miseries (unrelenting nausea, say, and painful recoveries) and thus make matters worse.

The case studies had me thinking about the tubes in (breathing, feeding, nasogastric) and the tubes out - the intravenous life, the catheterized life, the ventilated life. And that had me thinking - as Gawande proposes - that we all think about life as more than biological existence.

Gawande describes old age as an ongoing series of losses which accumulate to the ODTAA syndrome: the syndrome of One Damn Thing After Another.

"Home" - "a final curtain" in a curtained room?

With ODTAA, there is the prospect of being warehoused in a facility where a visitor (often guilt-ridden) must pass through gauntlets of residents teetering at their walkers or "slumped over in their wheelchairs." Along with their ills, the condemned suffer the "three plagues" - "boredom, loneliness, and helplessness." Gawande provides examples of alternatives: life-affirming hospice possibilities, as well as innovative congregate- and assisted-living situations, where life has not been reduced to a gated bed, a small dresser, a tiny TV, in a shared room divided by a curtain.

Choices: Holding on, Letting go
Characterizing death as the unrelenting enemy, which always wins, Gawande proposes strategies that spare patient-combatants (and their loved ones) "total annihilation." Rather than taking a Custer-esque last stand, he proposes Robert E. Lee as the model: fighting on "for territory that can be won and surrendering when territory can no longer be held."

From the battlefields of ERs, ORs, and ICUs, Gawande suggests that there are no victories in prolonged suffering. Patient-combatants should be the generals of their final campaigns and decide how and when to surrender - "understanding that the damage is greatest if all you do is battle to the bitter end."

The Hard Questions

Would a prolonged existence be an improved life? relatively comfortable? comparatively purposeful?

Imagining my body's bent frame and broke-down chassis (with worn-out suspension) as a vintage auto that's been towed (by ambulance) to a "body" shop, I hope that miracle-working medical mechanics would give me a realistic estimate of the damage and how much good mileage is left on my life-expectancy odometer.

After checking my fluids, pressures, transmission, and bearings, they'd apprise me of what might be repaired and restored, overhauled or rebuilt; and whether the parts department is up to the task.

I don't mind getting older (senior discounts), but I do mind the inevitable incapacities and complications that come with aging - and the prospect of losing independence, autonomy.

The Hard Conversations
Gawande wants the incurably ill to consider which engagements make living worth living. The sorting out of priorities, along with the command-and-control decision-making that would preserve those wishes, have to be discussed while all are lucid.

Even at 68 (a cancer survivor), I am encouraged to wonder how much impairment, pain, and suffering I would be willing to tolerate in order to continue to have the engagements I value. Without creating upset, what might I begin doing to assemble tangible keepsakes and intangible ones (memories and reflections) that I want to preserve and pass along?

What things do I want to finish up, before I am all finished up?

For me, Being Mortal is not about "giving up" but planning a well-considered acceptance, so that there is time and clear-headedness to make a good good-bye.

Shaping one's final chapter
Gawande writes that "we give virtually no thought to how we will live out our later years alone." And when we do, he claims, we are focused on "a good death."

When I first sought to obtain Being Mortal, I found that all the copies at all Westchester County (NY) and Fairfield County (CT) libraries had been checked out, and there were waiting lists for every one of those copies.

Hence, empirical evidence that more and more people are giving thought to what makes for "a good death" - which, Gawande urges, is "a good life all the way to the very end."