When Ed tried

Posted by on Aug 29, 2016 in End of Life | 13 comments

When Ed tried

 

Warning: this piece is graphic and harsh.    jcs

Smoking and drinking caused the cancer, which Ed ignored for a long time. By the time a doctor looked at the hole in his neck, the mass had congealed the base of the tongue to the right side of the jaw and burst through the skin. A steady drip of pink tinged, foul saliva ran down the side of Ed’s neck.  Ed, not being able to chew for months, was wasted, and every bone of arm, chest, abdomen, hip, leg could be seen, as if a dried museum display.

Treatment was obvious.  Melt the cancer with toxic chemo, dissect and rebuild the side of Ed’s face, leaving a hole to breath, fry the whole thing with mega-voltage X-ray.  Straight forward, standard and ridiculous.  In his pre-coffin cachexia, Ed would not survive the first milligrams of cancer killing drug, would never heal a surgical wound and would cook in a photon beam.

 

Thus, the radiation therapist said to the surgeon,

and the surgeon said to the oncologist,

and the oncologist said to the wife,

and the wife said to the patient,

“Ed, it can’t be done.”

 

“Why,” Ed asked.

“Because, you are almost a skeleton. Your body is nearly gone. The cancer is too large.”

“Build me up. Feed me by tube. Feed me by IV.  Make me strong and plump, again,” said Ed, remembering a time when even he had to diet.

“If we feed you, we feed the cancer. Better nutrition, stronger cancer.”

“I have to try.”

“It is too late.”

“I have to try.”

“It will become more horrible.”

“You don’t know me. I am strong. I have to try.”

 

Thus, Ed said to his wife,

who said to the oncologist,

who said to the surgeon,

who said to the radiation doctor,

“I do not care what you say, I have to try.”

 

They put a tube in Ed’s stomach, which kept falling out and getting infected because his skin was thin-wet-torn-tissue.

They put an IV in the vein in Ed’s arm and threaded it to his heart and they poured in gallons of fluid, and 100 thousand calories, and kilograms of fat and protein, and an apothecary of vitamins.  And the IV kept getting infected and clotted and infection spread and Ed was very sick, for days and weeks.  Ed was in the hospital for two months.

Ed gained weight and puffed up.  But not muscle or fat or tissue.   Just fluid, lots of fluid. Ed was a sick sponge.  With bed sores.  And a growing hole in his neck.

Nonetheless, Ed was excited that he looked fuller, rounded and he was many pounds more.  And, the cancer too was happy, because it ate protein and calories and fat.  It came to be that the mass in Ed’s neck got bigger, and the pink, stinking drainage flowed fast.

Then, on the same day the Ed asked the oncologist if it was time to start the chemo, the cancer grew into Ed’s right carotid artery. And the artery, with all that precious blood pumping fast, had a hole filled with cancer.  And then, a cork from a bottle, the firehose pressure which had nourished Ed’s brain pushed out the cancer, and the artery burst.  The blood driven by Ed’s pounding, fighting, strong heart, sprayed past the cancer and out the hole and erupted across the sheets, floor and onto Ed’s wife as she rushed to his gurgling scream.  And, in three minutes, Ed was dead.

And the oncologist, and the surgeon, and the radiation therapist and his wife said, “But, he had to try.”  But, as she threw out the red blouse, she tried to remember why.

13 Comments

  1. Thank you. I think the worst part is with care rationing soon, you will see this kind of thing start to stop.

  2. What happened to ‘First, Do No Harm’? And at what point do oncologists, radiation therapists and surgeons say NO to futile aggressive treatment demanded by patients or family members? A lost opportunity for palliative care. Tragic…

  3. Congratulations, Dr. James Salwitz! You are a great writer and as a fellow medical oncologist I rather enjoy reading your chronicles. Keep up the good work!!! (and don’t mind the criticism)

    • Thanks very much … I am certain that in this story you recognized hundreds of patients.
      jcs

  4. Great insight we all need to hear and understand… Thank you as always…

  5. Actually this story reminded me of an oncologist of blessed memory; she was my attending at a Queens hospital when I was in medical school. Sometimes I couldn’t tell who had more spitfire and guts, and more to lose with flagging treatment, the patient or the oncologist.

  6. I think when one is facing death , to try or not to try is the patient’s decision- sometimes the fight to survive is the only quality of life a person has- my dad was offered comfort care or big surgery with no gauranteed for pancreatic cancer- he chose big surgery and died in 10 days.

  7. with more money spent treating hopeless patients there is less money for those that can be helped. We All die. Don’t people get it. If they don’t, Too Bad,
    it will happen anyhow. We don’t have the money and drain the resources because some people can’t accept reality

  8. If we weren’t so afraid of dying, perhaps we might better understand when to choose palliative care. What is dying like, will it hurt? What signs, symptoms, or statistics let us know we should seek hospice or palliative care? How come no health care professionals discuss this with us?
    No one can predict the future, but why can’t we be educated to the dying process? Who should, can, or will teach us? Shouldn’t we understand what dying is like, or might be like so that we can choose to die in the best manner possible?
    By the way I had to look up the word cachexia, “wasting away due to chronic illness”. See, I learned something!

  9. Maybe it was the trying that ended his life sooner and faster. Maybe it gave him more time because he was indeed trying to help himself. Maybe his wife will reflect on this later and share her story to others; that trying was harmful, to his body but maybe not his fleeting spirit. He didnt have to try; he wanted to. He needed to show, through better late than never, that he was trying to help mend his own body’s disease. Maybe he had been depressed and bringing himself to a doctor near the end was his energies point in turn around. You have to love him for trying. That I do. God rest his soul. He was not a medical professional given countless scores of data and personal experience to influence his decision. His own sense of death was what counted to him and he died knowing he gave his last words in asking for a doctors help. It was too late for his pharmaceutical healing…but whose future might be brightened? Maybe his wife will discover cancer in her own body or become sick and go for treatment more quickly due to watching her husbands journey. Maybe doctors, in their futile attempts at healing, were giving his survivor a healers goal by providing comfort to his family that will spread to the community. Others may learn from her story of wildly spraying blood, that they might not want to use medicine to fix but to lead the body to death more peacefully. Would the opposite of trying be euthanasia? Can doctors suggest pills for one to die? Is palliative care just a slower form of that? Can doctors refuse to treat a patient and refer them to someone else if they feel they cannot be part of a treatment plan they do not agree with? Who determines whose suffering is needless? Relationship building moves through the writing of experience. So I am thankful that I read this blog today, so I can read a doctors story also.

  10. Kim,
    I very much appreciate your thoughtful insights, and am trying to learn self-forgiveness after my mom’s death. As you said ” He was not a medical professional given countless scores of data and personal experience to influence his decision”.
    Neither was I!

    Its been a few months after my 81 year old Mom’s passing, at home, with palliative care (a gut feeling I had to seek pain support for her). Still my mind circles around, did I do the right thing, was it enough, was it helpful/hurtful/ or nothing in between?

    Whose job was it to bring us down to Earth? The ortho surgeon said it was a clean break, just a screw plate was needed, a week, she’d be on her feet. Rehab started the same day, and her bone under the plate broke up into 4 pieces without any professional noticing for 2 weeks. I’d got into arguments with the therapist as she blindly followed drs’ orders and threatened me. I persisted, pulled down the sheets to show the hospitalist her GIANT swollen legs. Another surgery, pins and rods. Spiraled her into kidney failure, sundowners, nightmares, crying out “help me, help me!” in brief moments of sedated sleep.

    I admire Dr. Salwitz as he tries to empower us with wisdom. Perhaps he doesn’t have time to respond to each of us as he makes the best of his time helping as many as possible, making his patient counts reach the businesses practice goals. He has time to briefly comment to Dr. Resende. The medical hierarchy-another doctor will understand me quickly, another patient may or may not-therefore it takes too much time to engage patients. I wont’ be able to “help” more patients if I engage them all. Broadcast messages are the best he can do. Another pill for us to digest in our equally busy days.

    Drugs, interventions, needless or lifesaving? We have lost our way in a sea of pharmaceutical and surgical business practices. Palliative care helps ease the minds and suffering of all involved in the final journey. Please promote it. Paid for by your federal taxes. Also promote the fact you can change Hospice agencies if you don’t like the service you receive.

    Medical professionals please work towards educating us on Palliative care, offer it, offer information on how it works, and work toward making rules for receiving it more flexible so that you don’t have to be actually be dying within a time frame to get help. Encourage us, make us not afraid of the dying process, empower us to make the decisions away from devastating treatments. Make it available to non-terminal illnesses, or just because you’ve reached an advanced age, in order to promote and increase awareness and acceptance of reaching out to this kind of care to relieve suffering. Make us feel we’ve done the right thing.
    Thank you for this medical and emotional education.

    https://getpalliativecare.org/handouts-for-patients-and-families/

    • Thank you Kathryn. I think you did a wonderful job with your mother. To not be afraid of death is what will lead us away from devastating treatments (your words provide vision, comfort, and understanding). I lost my 81 year old father this year also, to pancreatic cancer. I am a hospice volunteer.

      • Kim, I am so sorry for your loss. A daughter’s loss of her father is profound and lasting. I’m sure he’d be proud to know you’ve turned your personal suffering toward helping others through understanding and kindness. It is a daunting task to educate in the midst of raw horror. But being alone in the midst of such a complicated matter is worse. Holding someone’s hand, being there, listening, coaching and above all comforting through knowledge and experience lessens the fear. We need more of you.
        My Mom’s 91 year old friend upon hearing the news of her passing, exclaimed “Good for her!”.
        Bravo Kim!

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