Four years ago, my cousin John was confined to his bed at a VA hospital. He was 55 and melanoma had spread to his liver, making him ineligible for a promising experimental treatment he thought he’d receive. He’d soon cross the hall to the hospice unit instead.
He betrayed no bitterness about his limited time or his considerable physical pain; he could barely sustain conversations about car racing or his beloved Chevy hot rod.
His bucket list contained one item. He was a lifelong musician, and he wanted to write a song for his 11-year-old daughter and only child, Corey.
In the 2008 documentary “Solace: Wisdom of the Dying,” John Monroe-Cassel, spiritual care counselor at Lake Sunapee Region VNA & Hospice in New London, N.H., said that death and dying “brings us back to living because it forces us to understand now.”
This is the work of the Endnotes column: to understand the now from the perspective of those who live with limited time. For some, this means squeezing out of an airplane 12,000 feet above ground with a parachute. For others, it may involve a trip to Vegas with their life savings, or maybe simply recording a song for one’s child.
Family members and close friends play central roles in many of these final acts, offering help that’s often freighted with their own psychological baggage. Doctors, psychosocial specialists, and nurses add guidance, obfuscation, humor, support, injury, and, sometimes, salvation.
Endnotes will air the whimsical and the heartbreaking, the messy and the neat, the science and the statistical. It will also take up the issue of end-of-life care, and how life-extending treatments affect our final days.
Dying, after all, is complicated, hard business, and dying well is more complicated, and harder.
There’s ample reason to discuss these issues now. Boomers and their children are beginning to openly discuss life’s end. And the government is suddenly in on it, too. The federal agency that administers Medicare and Medicaid in late October said it would reimburse doctors for so-called end-of-life conversations, in which patients can start to weigh the benefits and drawbacks of life-extending treatments.
In the end, the more people are ready to have the talk, the more likely it is that the medical industry will offer care that accounts for the vast, nuanced, and fluid decision points facing patients who are short on time.
Dying, after all, is complicated, hard business, and dying well is more complicated, and harder.
My cousin John’s death was pretty good as far as deaths go. He was in no pain in the end, and he was in good company and good spirits.
Since I’d helped him write a few songs years ago, he asked if I’d bring my guitar and work out a few lines, which I did. A hospice volunteer commandeered a mobile recording unit and Johnny, as we called him, managed to sing the melody.
When he heard the recording he beamed. “Thanks, cuz,” he said, holding up a hand for a high-five.
The experience prompted me to volunteer for a local hospice organization, simply sitting quietly with patients while their caregivers get away for a couple of hours, or sometimes helping them with legacy projects.
It’s a constant reminder that death’s work is not always maudlin.
The last time I saw Johnny, I played some guitar for two hours while he slept. When I got up to leave, he didn’t wake, and, figuring he might be gone soon, I told him I loved him and how happy I was to know him. I patted his chest and turned to leave, then heard a hoarse voice behind me say “Hey.” I turned to see his arm tilted up at the elbow, his open palm facing me, maybe to wave goodbye.
He motioned me closer with his fingertips. His eyelids cracked open and his mouth formed the faintest smile.
“Gimme a high-five,” he said.
About the Author Reprints
