What I Do and Why I Do It: A Palliative Perspective

I am today a family physician.

One who happens to be full-time faculty at a Family Medicine residency, adjunct clinical faculty at the University of Iowa’s medical school, currently Associate Program Director, and, as of seven months ago, the residency’s Program Director. And, in addition to being Board-certified in Family Medicine, I am also now Board-eligible in Hospice and Family Medicine.

But so much for all that medicine stuff.

Because, the thing is, I didn’t need to be a physician to make me who I am. Let alone to make me the Palliative Medicine physician I have become.

Life, in fact, was my only preparation for both.

My mother, dead at 49 of breast cancer; my father, dead at 66, himself of pancreatic cancer; me, my bride, then of only months, then suddenly helping me to raise my 11-year-old brother.

And don’t ask me to tell you about my father’s brothers, lost in their 20s, accidents both; his mother, dead of cancer in her 40s; her own mother, killed even younger; yes, by cancer.

For my part, I didn’t go to medical school until I was 49 years old, finally fulfilling a long-held dream that had also come to include being a country doc in Vermont, where we then lived (that I remain in Iowa, teaching residents, doing Palliative Medicine is a tale for another post).

Before that, in my previous career, I had been a writer, penning books on behalf of the likes of Time-Life Books, National Geographic and Reader’s Digest, in addition to writing advertising copy for those companies and many, many others.

But all that was then. And this is now.

And now, as part of my faculty duties, I see palliative patients two half-days per week.

Those half-days are always unpredictable, in terms of how many new consults, how many follow-ups, how long any one of those encounters might take.

Not to mention how amenable to Palliative Medicine any one patient—or his or her family—might be. Or what we, from a palliative perspective, can possibly do for that patient, that family. What family dynamics might be in play, especially—very especially—at the end of life.

What I do, however, to the best that I can do it, is always good.

Always rewarding.

And always, considering with whom I work, in good, very good, company.

And even on those days, when the day is nothing but death and dying, I am myself, in the end, good, even if it means a single hour at the end of the work day by myself, in silence, in a favored living-room chair, my bride of these, now 30-something years, Karen, knowing what she has come to know: that this hour usually undoes what has been done.

Nothing that I did in medical school prepared me for what I do now, at least in terms of Palliative Medicine.

Nor did any one moment in residency prepare me for this, with, perhaps, this, a single exception.

A woman who suffered a stroke, then fell to the floor in the bathroom, against a baseboard heater.

Was burned as a consequence, only to then have a heart attack, even as she lay there on the bathroom floor, eventually, blessedly, arriving at a local hospital, with me, by chance, the resident then on duty.

Never before, in rounding on the mornings following, had I seen so many family members in a hospital room, and never before so many family members, so loving.

And me then, doing what I could do, little medically, mostly holding hands collectively, even if, given so many family members, hand-holding by air, as Sylvia, days or a week later and surrounded by family, let go of life.

A couple of years later, I’m dropping off a package at the FedEx station at the local airport.

The clerk, a young woman, sees my name on the hospital badge dangling from my shirt placket, recognizes it, says, “I remember you. You took care of my grandma. Thank you. Thank you.”

No. Thank you.

Because I owe you, owe your family.

Because I learned more about love from you and your family. A love I to this day remember.

Learned what it means to be so loved; to live a life that mattered to so many; to have that life lost to those there, to those who couldn’t be there.

What that granddaughter didn’t know was that due to residency responsibilities I had been unable to attend her grandmother’s funeral, even though I had wanted to. But that Karen and I did a week, a two later, drive out to a small town here in eastern Iowa, to find the cemetery, to pay our respects. Karen and I standing a while on a rise in that cemetery, Karen beside me, knowing that I knew what she couldn’t fully know.

What I do, I do in part for Sylvia, for her family, for those loved her so much, for what they taught me, what I now teach others.

And Those You Love, Losing You

“What got you into the hospital?” I ask, already knowing what I know.

“Cigarettes,” she tells me, she surprising me, she not a breath to lose, her not losing a breath.

She’s in the ICU, hardly the first time, she only 52, at least one daughter, O2 Sat something like 58 when admitted, pulmonologist tells me maybe a year, me asking her what to do if her heart stops, she stops breathing, she telling me, “Let me talk to my daughter.”

“My own daughter should be here, “ I say, my heart, my heart in my words.

I see it all too often.

Smokers who smoked, thinking not them.

Only to have them meet me in the ICU, they all too literally sucking wind, and me asking them what to do if they die.

“You’ve passed away,” I explain. “We’re only trying to bring you back. Most times we can’t.”

“It’s not like TV,” I say. “CPR, some kind of massage. That shock to the heart, no big deal.”

“You’re dead,” I tell them.

“You’re dead.”

And we, for our part, wishboning death, desperate enough then to break your ribs, to electrocute you, to put a tube down your throat, to do whatever it takes to try to bring you back.

To do just that, to try—only to try—when, truth is, bringing you back hardly ever happens.

As for that tube down your throat, that ventilator breathing for you?

Just a machine, only a machine. It breathing for you, until you, if you can, can again breathe for yourself.

And if you can’t, if life is no longer life?

Someone, someone you so love, making the decision to stop that vent, to, figuratively, pull the plug, to let you go where you might already have gone, have gone more gently into that, that good night.

That someone living with that decision forever.

“What got you into the hospital?” I’d asked her that morning, and she telling me, “Cigarettes.”

To die for that.

To someday go to some ICU, like her, on BiPAP, glad only not to be intubated, not this time anyway. But to know that the next time, you then 52, maybe 53, might be the last time.

To lose what?

Everything. Everyone you love.

And those you love, losing you.

Death, Its Breath, Always Breathing

“I don’t want to die,” she tells me.

Death, its breath, irrespective of age, of anyone’s age, breathing then, always breathing.

And this patient, her, she, just then my own age.

Me telling her what I have already told so many before.

You are here.

So am I.

You and I both bicycling through life.

The world around us, seemingly slow until then, slow then as pedals spin.

Until this, this very moment.

Life, all at once, a stick through the spokes.

You, in your next breath, over the handlebars.

Me there with my hand out, my heart in that hand.

Those, my next words, cancer. Or heart failure. Stroke. A GI bleed.

Any such words aside, life itself, the life you knew; the life, by this remove, the one I know; that life, yours, mine, ours, all at once threatened.

“I don’t want to die,” she, speaking for me, speaking for all of us, speaking for any of us who ever lived, says to me.

“I don’t want to die,” her words heavened across time. “Doctor, I don’t want to die.”

Tears on My Pillow

It could never go on forever.

Never does.

Not life. Not happiness. Not this. Not any one friendship.

Me?

I’m thinking this, only days after watching Bruce Springsteen sing elegiacally in Kansas City of his own city — by intimation, by extension, of his friendship with the dead Clarence Clemons — of a city, their city back then, of Clarence, lost now, of their friendship, their love, this, theirs, now, a city of ruins.

The Boss then slow-stepping sideways into lights lighting the far corner of the stage that had so long been the Big Man’s.

“Now, there’s tears on the pillow,” Bruce, so haunted himself, went on to sing, “…you took my heart when you left/ without your sweet kiss/ my soul is lost, my friend.”

And me, the palliative doc, watching, listening, feeling, hearing in Springsteen’s voice, seeing in his shadow, itself shadowing a cone of light, the ghost of one friendship past, the ghosts of life itself.

Bruce, all at once, without the friend of his life.

Me, counting the loss of so many lives in my life.

My mother. My father.

Just this week a much-loved uncle. And before, aunts, uncles, grandparents. Friends, too. And only this past weekend, yet another patient.

Call him Jim.

Just 50.

Wife, three kids, the youngest, a daughter, only a girl, herself just 11.

Beautiful farm, our outpatient nurse-practitioner had told me.

A house Jim had himself built.

His whole life, for all he knew, for all any of us ever know, ahead of him.

Only then, a year ago, at another time of thanks, to find himself ill, to find himself losing weight. Only weeks later, only days after a new year suddenly made unhappy, a pathologist telling the tale: cancer, and mere months later, by CT, cancer…cancer everywhere.

Jim’s father had died at 44.

Jim himself explaining that he, young then, had felt robbed by his dad’s death, only now, tears flowing, to have death thieve from his own children their chance to have their own dad there.

His college-aged daughter all too soon graduating without him at graduation. A son, in high school, no dad to see him through high school to college, to marriage, to grandchildren. That little girl, herself with her whole life ahead of her, only knowing her dad this long, these few 11 years.

“My dad is going to die,” that little girl had told our social worker some few weeks ago.

My own brother was himself 11 when our mother died of breast cancer, me then all but 30.

To this day, I cannot know what Patrick experienced then at 11.

What I remember, these 31 years later, is Patrick making our mom laugh, often over nothing, she so sick, he coming in from school, his smile, whatever words, her face all at once alit, until one day, one June, the light that had been our mother went out.

And after that, Karen and I making Patrick, my brother, our son.

And now little Maria, her dad gone.

Her big sister away at college. Her older brother coping as best he himself can. Their mom, the widow she could never have imagined herself being, certainly not now, never this young.

And me, all these years after my own mother’s death, often in those years contemplating what that had meant to Patrick back then, now thinking the same, wondering what thoughts now darken Maria’s thoughts these few days after her dad’s death.

And what would I, were I with Maria, tell her tonight…

Tell her that her life might be still be life; may yet be the life her dad would have wished for her; that some day, not any day soon, she may yet get through a day without thinking of her dad, of this, her loss…

Maria, only then, like me, these 31 years after I lost my mother, 18 after saying goodbye to my father, remembering…

Remembering what was.

All that love suddenly lost. Maria knowing, in the end, what I already know, that there is no end to this, this grief, even when life itself ends.

Back at Jim’s farm, his wife, their children, this week look out to the evening trees.

And me here this evening, not so many miles from that farm, wishing that family sweet veils of mercy, those of which Bruce sang in that same song, those veils drifting through those same evening trees. Bruce’s next question, as for me once, for my brother, too, for Jim’s wife, for his children, the question that is now, has always been…

“Now, tell me how do I begin again?”

After

It comes to this, doesn’t it?

Clothes in the closet. Shoes on the floor.

The scent of who was, so devastatingly
close, in, this, that weekend shirt.

The one you loved.

For Maria

Stand for a moment where I’m standing now.

Me here, thumbing a chart.

My face to a window, a window looking in on a room in the ICU.

And me all at once, looking to the window, into the room, to the patient beyond, thinking, yes, Maria, I do know you. I do know you, Maria.

But what I know of Maria is this, what I knew before, that respiratory problems had brought her into the hospital.

“Bad lungs,” as Maria herself might say, in an accent you’d peg as Czech, maybe Slovak, although you’d be wrong either way. Pneumonia, it is, though. Pneumonia serious enough to make Maria septic, let alone in acute respiratory failure, that and more dry-marked on the board in her room detailing her life, her life this minute.

The same thing that brought her in last time.

Maybe even the time before.

And Maria there in the bed, a slip of a woman, so hard of hearing that I was only lucky to have chosen her right side, literally her right side. That smile, the one I remember from before, those eyes, those lake-blue eyes that have known what life will never let me know.

Only then do I remember more.

Maria, she, of the Polish accent, sweetness in every vowel.

Old now, only a teenager then. What, thirteen, maybe, at most fifteen. A girl, in any case. A girl, only a girl, no doubt a beautiful girl, hunted, no less than a deer, a rabbit, for what she then was to some. In a Poland no longer her Poland, but theirs, they of a solution once imagined final.

Escaping somehow to England, leaving behind, what, all she knew? Who, all she loved? And for what? Eventually coming by steerage to the United States, to the life she has known since. The life behind never behind. Her life since including children, the grandchildren, some once sought to deny her.

And this morning Maria’s my patient, Melanie’s patient, that history not the history that has any bearing on what is this morning pneumonia, is likely sepsis, but is history, is the Maria, the Maria I, others, others like me, those of us who love her, know.

“You’re beautiful,” Maria, not quite hearing Melanie’s question, says. “You’re beautiful,” her smile sugaring her words.

Maria, there in the bed, beautiful herself, all that she lived there in the bed with her, me knowing that only because of knowing her before. And days later, she, unable to communicate that, anything.

Stand for a moment where I’m standing now.

Me? I’m just doing what I’m doing. What I’m doing, my best, I only hope.

For Maria.

For all the Marias.

Not One Penny More!

It’s over, the election, that is.

And who among us is not glad for that?

But what to think now, even as we all consider what to think, now that we’re no longer watching negative political ads and are back to fielding drug pitches. No longer trying to read the fine print at the end of any ad; wondering whether Citizens for Tomorrow was Mitt’s super PAC or Barack’s, or given the laxity of the law, that of some rogue, some under-radar candidate in Newt’s clothing.

But consider this: both major political parties spent almost $6 billion in total on this election, no less than $2.6 billion on the presidential election alone. Their prime time coinciding with bad times along the Atlantic shore, where any fraction of that take would arguably have found a better use.

$6 billion.

$2.6 billion just on the presidency.

Not counting the super PAC money, we’re already way beyond folding cash and teetering on talking sin.

No, wait, we are talking sin.

And, closer to home, all those phone calls every day, every night, day after day, night after night, for months, and for what?

All that, just to give the guy who started to clean up a mess, the one his predecessor arguably left behind, the chance now to just keep on shoveling.

And, me, I’m thinking all that money for just this.

Not to undo what Sandy just did.

Not to fix what’s broken, the climate change that only ensures future Sandys.

Not to make the Affordable Care Act, aka ObamaCare, what it should be, AmeriCare, the same plan that covers Barack no less than Mitt, than Mitch McConnell, Donald Trump, Tom Cruise, you, me, my next-door neighbor, my daughter, my sons, equally, to the exclusion of nobody, to the betterment of all of us.

And let’s not go where we shouldn’t go: imagining that even a fraction of that money might have gone to education; to fixing the, what, tens of thousands of bridges nationwide that need fixing; to addressing inequities that no one today dares call racism, but still is; to making us build here the things that we buy that are built elsewhere; to, in the end, ensuring that the least of us is, when it comes to those core values, those modern-day inalienable rights of educational parity, access to health care, security in old age, the equal of the most blessed among us; yes, even if that means that those of us blessed pay more than those less so, again to the betterment of all of us, to the betterment of the ideal that we all call America.

Here is what I propose: that all of us, even the most zealous of partisan supporters, withhold support from any and all future political campaigns.

Not one dollar. Not one cent. Not to any political candidate.

The problem with politics today is not the need for more money, but the need for less money.

 

So, give nothing. Give not one penny more.

Force the candidates to rely on publicly-supplied funds, the ones you and I have the choice to contribute to on our tax returns. Take the super PACs out of the equation by denying those vampires the money that is their only lifeblood. Do for your country what you—Democrat, Republican or otherwise attracted—know to be right: to let candidates speak for themselves, not for those who bought air time; to make the election process one of ideas, not of any ideology beholden to some super PAC; to, in the end, make us again what Lincoln once said we were: a “government of the people, by the people, for the people.”