Marquette’s first hospice

by Don Curto

Jon Magnuson’s piece, in this publication’s December 2008 issue, on work being done by today’s hospice workers leads me to write some of my memories of what well may have been Marquette’s first hospice—the care provided to my late wife Joan.

Down, down, down
into the darkness of the grave
Gently they go, the beautiful,
the tender, the kind;
Quietly they go, the intelligent,
the witty, the brave.
I know. But I do not approve.
And I am not resigned.

— Edna St. Vincent Millay

The time is 11:15 on a bright Saturday morning. The date is the 15th. The month is July. The year is 1978. The dying woman on the bed is my wife, Joan.
If you had known her in her vibrant days, before the effects of lung cancer, you might not now easily recognize her.
Her hair is just spiking a slow return from its chemical-caused loss; a once healthy complexion is sallow, overly white, with paper-thin skin drawn tightly over her strong cheekbones, deeply sick-looking; a strikingly brilliant life spark is gone from her eyes. There now is only emptiness, a shallow vacuousness.
Death, I think, is palpable in the room. He is quiet, but I am sure that I hear him in the corner, watching his prey. I can’t see him, but I can feel him there.
As her breathing becomes more labored, Death comes closer.
“It’s time,” he says quietly. “It’s time.”
I ask a helping friend to leave the room.
“Close the door,” I say.
Only Sergeant Pepper our black Labrador and her constant bedside guardian is there with me. He knows what’s happening, and he sits, alert to last sounds.
The stethoscope is on the bed. Awkwardly, I get set to listen to the end of a life.
In the past few weeks, the cancer, aside from attacking her bones, has moved into the brain that once remembered whole operas and 100 popular songs and most of Edna St. Vincent Millay’s poetry.
I remember, strangely at this time, when we put my mother’s coffin in the ground at the cemetery years ago.
My father sobbed: “Now I will never see her again.”
I thought, after this time, I will never hear her again.
“Listen carefully,” I say to no one. “Listen carefully.”
There is no movement, no twitching, no gasping, no final words. Just quiet. Death sits waiting, with patience. He knows now who the winner is, the way things go for all of us.
The heart still beats; there is life. Her body, filled with pain, has been injected with morphine wherever I could find a muscle for the needle. Breathing is shallow and irregular; heart beat is faint, but solid. It is magnified by the stethoscope. Strange, I think, sometimes the beat sounds like a drum struck in a deep canyon. I guess the spirit is receding.
I remember, even at this time, two things that mark the spirit clearly. One, on a Sunday several months ago, her pain was bad and the morphine was not helping. Her oncologist’s home was only a few blocks away. He was mowing the lawn inside the white picket fence when I got there.
“What can we possibly do?” I asked.
After a pause, he said there was one thing that might help some, but he didn’t think she will take that step. Then, I didn’t either.
At home, I told her the doctor said that some shots of a good Scotch might help with the pain. She was a recovering alcoholic of some years, and had many admiring friends who had been helped, behind her. She thought.
“No,” she said. “I would rather be this way than take a drink.”
That is called a strong spirit and a good program.
Another time, maybe four or five months before, she received a letter from her trouble-ridden married daughter who complained that most of the daughter’s problems had been caused by her mother.
After some tears, she wrote a note to her daughter. It read: Dear D.., now that you know these things, what do you propose to do about them? Love, your mother.
As I was thinking about parts of her life while listening to her now-weak heartbeat, I noticed, suddenly, there was no longer a heartbeat. A life had just quietly slipped away without a magnificent elegy.
There was silence, deep silence, deeper in that poor body than any silence I had ever heard. I had thought that at this time I might hear the faint sound of beating wings, a kind of audible, spiritual flight. There was nothing.
“What did you expect?” Death asked. “Bugles?”
“No,” l replied. “But I have had enough of you: two wives, four small children. I want nothing more to do with you. In the event that I ever need you, I’ll call.”

— Don Curto

Thus ended Marquette’s first hospice case. But the idea, the organization and implementation were not the work of one person. The drive and the support largely came from Joan’s oncologist, Aaron Scholnik. There were others, too, nurses, aides, friends without whom there would have been no hospice care.

But no matter what happened, and there were difficulties, the strong support and the wise counsel of Dr. Scholnik was always there. Below is a thoughtful and generous view of how he remembers those days thirty years ago and what we accomplished:

As an oncologist, one of my main concerns for my patients is their quality of life. Yet death, and the long or short road that leads to it, is a part of the life journey for every person. So how do we know when the real concern should be for the quality of death?
Perhaps this is a false dichotomy, and usually the solution is obvious to all who are involved. When the end of the road is in sight and there are no further intermediate destinations or goals to obscure it from view, then it is time to treasure, enhance and even embrace this last stop.
This is a concept (stripped of its bureaucratic and governmental definitions) called hospice. A hospice was just an inn to provide respite, rest, comfort and safety for travelers.
Unfortunately, in 1978, we did not yet have a formal hospice organization in the Upper Peninsula and insurance hospice benefits were as yet undefined.
The concept of a person dying at home comforted by family, friends and a familiar environment seemed at odds with the provision of medical and nursing care to provide physical comfort.
Without a systematized hospice regimen, it required an exceptional patient and her caregiver/husband as well as nursing services able to see beyond the status quo to accomplish what Don describes. This was truly a hospice conceived and implemented for one unique person—perhaps one of the first hospices in our area.
Now that hospice organizations are available throughout the Upper Peninsula, we no longer have to reinvent the wheel for each patient.
Perhaps the next goal of hospice is to realize that a hospice in the original sense was never limited to just the end of the road.
End-of-life care currently is artificially separated from palliative care and all the other way stations on the continuum of care. This is, I believe, the natural consequence of our having broken the conventions of care in 1978.
Today’s innovations become tomorrow’s conventions with which the next generation must contend.

— Aaron Scholnik
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