There are many ways we support those journeying through illness and death. Our authentic caring often finds itself in this sometimes-messy space.
Palliative care physician Dr. Sunita Puri wrote recently in “The New York Times” that “death is never neat.” Dr Puri suggests that our most authentic caring for those who are dying comes at the point we are prepared to “sacrifice neatness” and to “stumble through the thicket with them.” Those who work around advanced illness and dying are all too familiar with the messiness that such illness can bring.
And yet, the most oft-used image of dying is of an old, wrinkled hand laying gently in the hand of the one giving accompaniment. This is a picture of death’s serenity and peace: its neatness. These hands are commonly used as emblematic of palliative care, a symbol of the good work we have done to provide this neatness at the end of life. For those of us working in palliative care, these hands represent the full spectrum of things we do to support people to live life with quality long before death comes to pass. These hands also do not honestly convey our most important role, not in serving tidy resolutions, but in stumbling through that thorny thicket together.
There are many ways we offer care to those journeying through illness. As we open the conversation on all “Matters of Life and Death” during Australia’s National Palliative Care Week, our authentic caring must be seen as much in the sometimes chaotic space we hold for hands which grasp for us through the bramble, as in all the practical solutions and tidy words we can provide.
The hands that reach into the in-between places,
when living travels forward while death closes in.
(Our 10-year-old son) “What did you say to Bill,
the last time you saw him?”
Bill, the old neighbor, just died, had leukemia,
on a rental electric hospital bed, in the living room with the good couches and the walnut-glossed Steiner,
a syringe full of drugs, medical junk hiding photos on the sideboard,
his family there weeping,
and giggling, at dying’s eerie silence punctured by the air mattress hissing, whistling,
out of sync with last broken breaths.
A few weeks before,
we sat, on the good couches, had a coffee,
he had been up a ladder clearing immortal ivy from the gutters.
(Me, reply) “We talked about holidays, all Bill’s house chores,
I took to leave, Bill gripped my hand, I choked, said, ‘See you, Bill.'”
(Son, baffled) “But how did you know that would be the last time,
if he was still so ALIVE?”
(Me, softly), “In the way he clenched my hand, and held it tight,
a long, quiet while.”
A hand pale, mottled,
resting limp, melancholy, in another of the living,
a story of death floating through mystical calm,
There are other hands that reach into the in-between places,
when living travels forward while death closes in.
A man lay in his bed, had a neurological disease,
offered to bring the computer and television,
suggested he might feel better if we helped him sit in the garden,
tried to pull back the curtains to let him watch the clouds,
thought living things might shoulder the pain,
he rested silent,
we stood awkward, turned for the door, brushed his shoulder.
He grabbed my hand, white-knuckled, and locked on.
He mouthed “Thank you for coming,”
offered a chocolate and smiled,
and died a few days later.
A hospital ward meeting with an ill man, had lung cancer,
talked of what we would do to get him home,
focused on living things of what to eat, how to shower, reach the toilet,
danced around death words.
Back in his room, he clutched my hand, and it stayed there.
He discharged every deepest terror and yearning,
breathed a snotty exhale, let go, wiped his nose with his hand,
we cried and chortled at the profundity, absurdity,
and knew together he would never make it home.
A religious man was ill, had bowel cancer,
prayed to God,
students deduced “did not want to die, was in denial,”
we sat, talked of children, hopes, love, houses, work, usual living things,
stood to leave, offered a nod,
does not shake hands with females.
He grasped my hand, and we knew he grasped his story.
The students gulped,
and the man passed wind and we all chuckled,
and I whispered, “Take care.”
The man was young, a frequent flyer, had liver disease,
came and went, through the doors, with his smokes,
upbeat, casual, we all knew him,
one time we sat on the seat outside, ate my sandwich while he puffed,
watched the trains, ordinary things, “Back to work.”
He moved fast, pressed my palm hard, handing over his secret.
It wasn’t long then,
before the kitchen staff noticed the tray returned,
without a fork dent in the mushed-up meal.
These hands flood the in-between places,
tender, ferocious, clumsy,
bulging veins of knowing,
wordless postcards sent from somewhere else,
spring out the instant we are walking away,
when all is done with talk and practicalities,
grip them tight, listen,
your presence is requested for the dizzying overture,
hands of fading men, mostly.
Cling magnetic, are hard to let go,
reveal all fears, I’m not quite ready for this,
tell of the turbulence, feel the pain irresolvable, heck, this really sucks,
know calm is vaporous,
soak the space of words exhausting or inept,
open room for aching conversation,
say gosh, excuse my bowels,
please, have a chocolate,
and thank you for the time,
Bill kept doing living things,
went up a ladder, tidied the ivy,
fixed leaky taps, told grandpa jokes,
talked about the days they bought a country pub, fed the young folks beer in lock-ins.
But his hand pressed into mine the strongest goodbye.
And he told me what he already knew.
The author currently has Fulbright Scholarship at the Johns Hopkins University Center for Humanitarian Health. She’s a palliative care physiotherapist, researcher, and a board director of Palliative Care Australia.
This piece expresses the views solely of the author. It does not necessarily represent the views of any organization, including Johns Hopkins Medicine.