Tag Archives: Palliative Care

John Adams on Aging, Illness and Death: A Geriatrician’s Unusual Book Review

“My House is a Region of Sorrow, Inhabited by a sorrowful Widower…The bitterness of death is past. The grim spider so terrible to human nature has no sting left for me.”

–John Adams to his son, John Quincy, upon the death of his beloved wife, Abigail.

A Geriatrician’s Perspective

In First Family, Pulitzer-winning historian Joseph Ellis elucidates the character of our least-venerated, least-appreciated Founding Father, John Adams.  He brings Adams to life by presenting his life appropriately intertwined with one of our most-beloved First Ladies in history, Abigail (Smith) Adams.  As with all Ellis’s books, it is written with clarity, verve, and eloquence, mixing the Adams’ remarkable public career with his no-less remarkable marriage and personal life. How many people can claim that they effectively chose a country’s founding document (Jefferson), Military Commander (Washington), and Chief Justice (Marshall) and to have fathered a future President (John Quincy)?  And these are merely sidelights to a remarkable life of achievement. Rather than discuss the usual political topics, I focus here on a favorite topic of mine: aging.  Among the gems of insight scattered throughout this book are Adams’ (and Jefferson’s) thoughts on getting older, failing health, and death.  For a man who lived past the age of 90, at a time when life expectancy was closer to 40, his thoughts sound remarkably modern, hinting at the universality of these issues.

Adams and Jefferson on Aging

In the twilight of their lives, John Adams and Thomas Jefferson famously corresponded, reflecting on their lives and debating their political differences.  The correspondence had ended when Jefferson and Abigail Adams — John’s lifelong partner in all things domestic and political – exchanged letters, unbeknownst to John.  Jefferson denied paying a known “journalist” scoundrel, James Callendar, to libel John – which was a lie.  Abigail directly called Jefferson out on this lie, writing that, after their many years of friendship, “the Heart is long, very long in receiving the conviction that is forced upon it by Reason.”  After noting that Jefferson’s critics had accused him of being a disingenuous and dishonorable, steely-eyed Abigail says, “Pardon me, Sir…I fear you are.” Nobody he admired had ever been so direct with Jefferson on this point.  The result was that no further correspondence between households occurred for nearly a decade. Wouldn’t we all love to have such eloquent, steadfast support from our partner! After many years of bitter silence over such issues, Adams reignited a conversation, writing to Jefferson that, “You and I ought not to die before We have explained ourselves to each other.”  The resulting correspondence between the two, 158 letters worth in total, memorably did just this, as each posed for posterity, knowing their letters would be read by History.  While most discussions of this correspondence focus on the political ideas between the two, such abstract thoughts were interwoven with other topics.  This included sublime thoughts on aging, health, and death. In one exchange, Jefferson offers (p. 238): “But our machines have now been running for 70 or 80 years, and we must expect that, worn as they are, here a pivot, there a wheel, now a pinion, next a spring, will be giving way. And however we may tinker them up for a while, all will at last surcease motion.”  In my clinic, helping my older patients navigate through issues of their “machines” running down, dealing with multimorbidity, frailty and polypharmacy, I often feel just like some mechanic, “tinkering” with their delicate “parts”, hoping to keep them moving as long as possible.  Many patients of mine, especially the men and the engineers, complain about their declining abilities like cars springing leaks, rusting through, and falling apart. In response, Adams worries about something slightly different: “I am sometimes afraid that my ‘Machine’ will not ’surcease motion’ soon enough; for I dread nothing so much as ‘dying at the top,’ and thereby becoming a weeping helpless object of compassion for years.”  Adams’ had an ongoing fear of losing his mental faculties. As Ellis notes, Adams had seen the mental deterioration of his cousin, Sam Adams, and John “feared dementia more than death.”  This is the sentiment I so often hear from my patients, that their greatest fear is getting Alzheimer’s disease. My own experience with patients confirms this as one of their greatest fears as they grow old.

Literary Illness

Among the literary gems unearthed by Ellis are Adams’ colorful descriptions of his various ailments.  He creates a lovely neologism to explain one particular problem:  the “quiverations” in his hands.  These tremors prevented this inveterate, lifelong writer from doing so effectively.  He had to resort to dictating his ideas to whatever grandchild he could convince to listen.  I love this term, which captures the spirit of how tremulousness must feel from within. I’ve had patients say how they simultaneously don’t notice their tremors, but how annoying it is when they have to deal with it.  I’m likely to adopt this term for my patients, as I love the verve it imparts to the condition. In another case, he complains that his “constitution is a glass bubble or a hollow icicle”.  He worries that, “A slight irregularity or one intemperate dinner might finish the catastrophe of the play.”  He was on the brink, in which a new stressor might push him over the top.  I can think of no more poetic expression of Fried’s Frailty, which is a physiological vulnerability to stressors which predisposes older adults to morbidity and mortality.  Thinking of my frail patients as “glass bubbles” is a perfect metaphor for those struggling through another Polar Vortex in Chicago.

Death, Dying, and the Spirituality

When Abigail died, as the quote above indicated, Adams was grief-stricken for nearly a year.  After 54 years of marriage, he was lost without his lifelong confidant.  Grief at the death of a spouse or other loved one is a constant risk for older adults, especially if it leads to on-going depression.  It is a wonderful reminder of the blow such events can deal to our older patients. Adams despite a having a Deacon for a father (whom he deeply admired), had skeptical views of religion and the afterlife. In his later years, when asked about the Christian view on life after death, he jokingly responded that he assumed God would allow him to further debate Benjamin Franklin as part of the experience. Nevertheless, he did assume there was some sort of afterlife: “If it should be revealed…that there is no future state, my advice to every man, woman, and child would be…to take opium.” On the day of the 50th Anniversary of the Declaration of Independence, which Jefferson was chosen to author by Adams, the two Founders died within hours or each other, on July 4th, 1826.  Adams famous last words, “Thomas Jefferson survives,” were incorrect; Jefferson had passed shortly before his colleague.  Like two intertwined spouses, the two friends left their earthly lives together.

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Filed under End of Life Care, Geriatrics, History, Palliative Care, Uncategorized

History Lessons: General Ulysses S. Grant on a Palliative Care Approach for Terminal Cancer

Ulysses+S.+Grant Memorial Day famous war heroes

History is a great teacher.  Whenever I start to believe that our contemporary issues are new to humanity, I seem to immediately encounter a historical example.

I just finished reading a biography of Civil War General and President Ulysses S. Grant.  A lifelong cigar smoker and moderate imbiber, he died of head and neck cancer.  Memorably, he wrote his autobiography, encouraged by his editor Mark Twain, which is considered perhaps the best presidential example of the genre of all time, while consciously dying from his cancer.

Unbeknownst to me, he also took time out from writing his memoirs to write some personal thoughts into a diary, including about his cancer.  The insights into palliative medicine are remarkable, especially given the continuing ignorance of them in our own day.  He writes in a remarkably clear-headed way.

Treating the Pain

Describing the pain and symptoms he was having he says, “…I have watched my pains and compared them with those of the past few weeks. I can feel plainly that my system is preparing for dissolution in three ways: one by hemorrhage, one by strangulation, and the third by exhaustion.”  This is a stunningly prescient and dispassionately clinical description of his prognosis, and one that I would be delighted to hear from an intern on my service.

Then, for his doctors, he makes crystal clear his care preferences, “I have fallen off in weight and strength very rapidly for the last two weeks.  There cannot be a hope of going far beyond this time.  All any physician, or any number of them, can do for me now is to make my burden of pain as light as possible.”

A clearer description of the desire for a palliative approach at the end of life couldn’t be made.

He worries openly about his current family doctor insisting on bringing in more specialists, “I dread them…knowing that it means another desperate effort to save me, and more suffering.”

As he weakened, he recorded his reactions to his pain medications.  As his doses of morphine escalated, outlines a distinction between addiction versus normal escalating needs for pain relief, “…when I do take [morphine], it is not from craving, but merely from the knowledge of the relief it gives.  If I should go without it all night I would become restless…from the continuous pain I would have to endure.”  My patients worry all the time about “becoming addicted” to pain medicines – it would serve me well to simply read this passage in reply.

Existential Suffering…and Triumph

One strategy for normalizing end-of-life situations, as difficult as it is to note at times, is to use humor, something Grant does expertly, “The fact I think I am a verb instead of a personal pronoun.  A verb is anything that signifies to be, to do or to suffer.  I signify all three.”

Yet all was not seen as bleak.

He appreciated all the more the trials and tribulations the country had endured through that horrible war, and he was glad to have seen it through. “It has enabled me to see for myself the happy harmony which has so suddenly sprung up between those engaged but a few short years ago in a deadly conflict.”

And he was appreciative of the sympathy he received from his recently united fellow citizens. “It has been an inestimable blessing to me to hear the kind of expressions towards me in person from all parts of the country; from people of all nationalities, of all religions, and of no religion, of Confederate and National troops alike, of soldiers’ organizations, of mechanical, scientific, religious and all other societies…They have brought joy to my heart, if they have not effected a cure.”  Reflecting on one’s life, even when not as eventful as the general’s, is often cathartic for patients.

And he had the occasional  “good days” that I urge my patients to embrace, sitting on his porch, “I feel pretty well…I am as bright and well now, for a time at least, as I ever will be.”

Engaging with Loved Ones to the End

Unable to talk, he wrote a loving farewell to he beloved wife, who was wracked with grief.  “With…the knowledge I have of your love and affections and the dutiful affections of all our children, I bid you a final farewell until we meet in another, and I trust better, world.”  Like many, he had spiritual needs to satisfy at the very end.

Having finished his memoir and sent it off to the printers, he signed off. “There is nothing more I should do now.  Therefore, I am not likely to be more ready to go than at this moment.”  He had shrunk down to under 100 pounds; too weak to sit, he retired to bed.

Three days later, his family gathered around him, he died.

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Filed under End of Life Care, Geriatric Oncology, History, Palliative Care

Good Morning and Goodnight, Domino

“Good morning, Domino, what are you doing?”

I had rushed down the stairs to get my 20 minutes in on the treadmill.  I hadn’t seen him lounging on the couch.  I was perplexed why he was lying with his feet handing off the edge.  No response.  That’s weird.  He’s such a cat-napper. Must be really tired, poor guy.  Getting old. 

“What’s the matter, Domino?”

Then it struck me – he wasn’t just lying there, half-sleeping.  He was completely still.

My insides froze in realization.   I immediately reverted “doctor-mode”, moving closer and searching for breathing.  Or some kind of movement.  Not trusting my eyes and heart,  I laid my hand on his chest.

Nothing.

He was gone.   Our housemate of 17 years, whom I seen just hours ago as he went bounding down the basement steps, was dead.

I hadn’t seen it coming.  I felt ashamed.  How come I didn’t realize it was coming? 

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He was one of those individuals who was so full of life, you just never thought he’d stop.  So alive – so infuriatingly alive, in the middle of everything, demanding, persistent, insistent, and loving — he didn’t do anything half-heartedly.  Even as he got older and thinner, with a little less sparkle in his eye, he remained adolescent in his ways.  Snuggling aggressively.  Whining demandingly.  Sneeking persistently.  Purring excessively.

How could that all be over?

Domino, the cat who would seemingly never die, who had hardly been sick his entire life, was dead.  Just like that.

It’s crazy, I thought, I’m a doctorNot just a doctor, but a geriatrician and palliative medicine specialist.  I’m always counseling people about prognosis and end-of-life.  I had just been saying how spry Domino was for an “old man”, how he would probably live at least another 5 years.  Of course, I had noticed that he was a little thinner, that he was developing cataracts, that he couldn’t jump onto the bed anymore.  But he seemed so, well, ALIVE.  How had I missed it?  What’s wrong with me?

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How do I tell Tamra?

Domino was always hers.  She had picked him out that day – or rather, he had picked her out.  Came right over and introduced himself to her, the smallest of the litter.  She brought him back to our grad-student apartment, let him run around, allowed his bright blue eyes full of curiosity to win her over, letting her make the case to me for him to stay.  I was against it – we didn’t have time for a cat, we were both too busy, too wrapped up in our own concerns, ambitious young folks making our way to careers in academic medicine and business in the middle of the bustling City.  We already had a cat, inherited from a friend, an adult animal that lived with us, tolerated us, but wasn’t part of us.

They both looked up at me, his mischievous blue eyes beside her beseeching brown ones.

I didn’t have a chance.  We were now his family.

The thing about pets – they are always there, and they’re always the same.  Over all of those 17 years, Domino never changed – he lived the most consistent life.   He was always there, a constant source of energy, trouble, and love – through our student-apartment life, our move to our first grown-up house, to another apartment in Steel City with real jobs, to another house in that city, and a final destination in a bigger house, back in Chicago where we started.   Thinking through those many years, like a time-lapse film running  at super-speed, he’s a remarkable constant.  Same personality.  Same insistent demands.  Same acceptance when demands were met.  No worries about anything else.  Quick to cuddle and purr, regardless of what happened before.

I’d gotten so used to him.  So reassuring to know he was there with Tamra when I couldn’t be.  That constancy was assumed.  Over time, it was required.  Having that constancy gone, out of the blue, is…terribly…upsetting.

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I went upstairs, heart flailing, into the usual frenetic pace of another morning with the boys.   I walked slowly into the schoolroom.  She was there, working with the twins on their lessons, as usual.  I didn’t want to scare them.

I failed.

“Tam.”  My voice sounded weird, even to me.  They all turned, concern in their eyes.

“What’s the matter?”

“Can I talk with you…privately?”   I motioned with my head out in the hall.

“Sure.”

Realizing a had less than a minute before the boys would descend, I tried to sound normal.

“Domino died last night.”

“What?”

“He died last night.  He’s lying on the sofa downstairs.”

Like me, she didn’t believe it.  “Are you sure?”

Was I?  “I’m pretty sure.”

“I want to see him.”

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“Should we tell the kids?” she asked.  I had wondered the same thing.  It was just about time to pack them up and take them to school – how would they respond?

“Yes, of course, it’s what we call a ‘teachable moment’ in the hospital.”  Somehow the obvious thing to do, to expose one’s children to all of life’s events, is questioned when we’re struggling with our own feelings of inadequacy.

I gathered our 3 boys together around me, squatting down to look them square in the eye.

“Listen guys, I have something important to tell you.”

Serious nods.

“Domino died.”

“He DIED!?!”

“Yes.”

“Where is he?  Can we see him?”

I took them downstairs, and they wanted to touch him, to experience it for themselves.  Smart.  Appropriate.   Their individual reactions were perfectly in character – amazing how they never break character, I thought.

Harrison (5): (While sucking on his thumb.)  “It makes me sad.  At least we’ll still be able to play with Grandma’s kitties.”

Xander (8): “What happened?”  [I don’t know]  “When did it happen?” [Some time last night.]  “Why are his eyes open?”  [That’s what happens sometimes when people and animals die.]  “Is he warm?”  [Go ahead and touch him.]  Etc, etc, etc.  Ever the nervous questioner.

Austin(5): “Can we get a dog?”

I noticed my wife didn’t want to touch him.  Later, she confessed to me that he always purred when she touched him, that he wouldn’t, and she knew she would bawl if she touched him.

I’m glad we had the boys experience this.  The author E.B. White, of Charlotte’s Web and Strunk & White’s Elements of Style,  once said that one should always treat children with respect by talking about adult things in terms they can understand.  As usual, Mr. White was correct.

I will try to keep this in mind when considering end-of-life discussions with families.  If they ask, always let the kids participate.  They often bring an honesty and openness that adults lack.

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I spent the rest of the day feeling remarkably melancholy, unable to shake my feelings of sadness, loss, and guilt.  A little over a year ago, my father passed away, a victim of cancer (http://chicago.academia.edu/WilliamDale/Papers/855803/My_Fathers_Life_and_Death_from_Cancer ); in certain respects, my emotions are more disheveled over Domino.  Because I care for cancer patients regularly, I knew well before my family that my father would die from his cancer, and I had prepared for it.  I was completely shocked to find my cat had died.  Although I thought about my father a lot, we had become estranged over time, and we didn’t talk regularly, so his death did not change my daily life and routines signficantly.  Domino, in contrast, was a constant presence our lives, especially my wife’s life.  It’s impossible right now to walk through the house and not be constantly reminded of him.  And, unlike my father, who could be temperamental and unpredictable, the cat was consistently contented and friendly, a soothing presence always.   The combination of his constant, supportive nature and his unexpected sudden departure, is making these feelings very difficult to shake.

I really want to be a more consistent source of support to my friends, family, and colleagues.  A steadying influence can be instrumental in helping people make it through the day.  And when working with families as their doctor, I need to keep in mind just how difficult a death, especially an unexpected death will be, how much of a “hole in the universe” the loss of a loved one will create, and how empty one will feel.

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We reflected on Domno’s life tonight.  It was a great life – better than most of us get.  He was happy, vibrant, and engaged right up until the very end.   He was able to live life on his own terms.  And he died at home, not in any pain, around loved ones, in his sleep.  I will do better to emulate these characteristics, and hope my own earthly departure will be as short, simple and easy.  And I will work harder to help my patients have the same sort of “healthy death.”

“How are you doing?”

“I’m so sad.  I’m really going to miss him.”

“Me too.”

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Filed under End of Life Care, Pets