Category Archives: Palliative Care

Existential Pain and History

mte5ndg0mdu0otg3mjq1mdcx“I am a dead man!” Alexander recognized immediately that his condition was mortal.

At first, the patient suffered such exquisite pain that Dr. Hosack did not strip off his bloody garments…When [the patient] complained of acute back discomfort, [the doctor] and other attendants took off his clothes, darkened the room, and began to administer [medicines] to dull the ache.

[The patient] was preoccupied with spiritual matters…No sooner was he brought to the Bayard house than he made it a matter of urgent concern to receive last rites from the…Church.

When [the pastor] entered the chamber, he took [the patient]’s hand, and the two men exchanged a ‘melancholy salutation’… He explained that…”It is a principle in our churches never to administer the Lord’s Supper privately to any person under any circumstances.” [The patient’s] friends thought it heartless to refuse a dying man’s last wish.

As befits a great orator, Alexander roused himself for one last burst of persuasion.

At that point, [the pastor] relented and gave holy communion to Alexander, who then lay back serenely and declared that he was happy.

——————-

One common felt pain for patients at the end of their lives is existential or spiritual pain. Though difficult to define, most of us practicing palliative medicine recognize it when we see it. The proper intervention for it is not additional opiates, but rather appropriate spiritual support.

It always impresses me, when reading history, just how often our common humanity binds us across time. The patient above is Alexander Hamilton, lying on his death bed following his infamous “Interview at Weehawken” with Vice-President Aaron Burr . This slightly edited account, taken from Ron Chernow’s masterful biography, Alexander Hamilton, is a dramatic rendering of a man in existential crisis at life’s end. Hamilton recognized instinctively, as he so often did, his need for spiritual input to his pain. Unfortunately, in today’s medical world, we too often fail to recognize this need, delivering the wrong intervention, in the form of another dose of dilaudid, to patients needing spiritual uplifting.

This is not the first time I’ve noticed this in reading through historical biography. U.S. Grant eloquently describes a palliative approach to end-of-life care, as he completes his famous Memoirs while dying from head-and-neck cancer. John Adams describes a receding of the fear of dying, to be replaced by a fear of dementia. Human life, and death, resonates across the ages.

As I prepare for another stint on our Supportive Care Unit, a typically draining two weeks full of existential pain, I find reflecting on our common humanity, and the special role physicians are privileged to play in it, helps sustain me through the experience.

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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

Simple Tests to Make a Scary-sounding Pancreas Surgery Go Smoothly

Simple Tests to Make a Scary-sounding Pancreas Surgery Go Smoothly.

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Filed under Geriatric Oncology, Palliative Care

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