Showing posts with label death. Show all posts
Showing posts with label death. Show all posts

Wednesday, September 1, 2010

A dying patient is not a battlefield


By Theresa Brown, Special to CNN
August 31, 2010 10:30 a.m. EDT

Source



Editor's note: Theresa Brown is an oncology nurse in Pennsylvania. She is a leading contributor to The New York Times' blog Well. She is the author of "Critical Care: A New Nurse Faces Death, Life, and Everything in Between."
(CNN) -- The patient, in his late 70s, had survived prostate cancer and had a new diagnosis of leukemia. A few days before, he'd been healthy and fine, but now his white blood cell count was so high that it was clogging his circulatory system, making it hard for him to breathe.
We brought his white count down and relieved his shortness of breath. At that point, he could have opted for palliative care and gone home on hospice with a decent enough quality of life to enjoy what little time he had left. However, the patient, encouraged by his family and urged on by his oncologist, chose aggressive treatment instead.
This is a hard case. In his recent New Yorker article "Letting Go," Dr. Atul Gawande explains how the first impulse of doctors, patients and family members to "fight" cancer or other serious illnesses makes it very difficult to have honest discussions of what treatment can and cannot do.
I understand why physicians find these conversations difficult, why it's preferable to focus on the good we can possibly accomplish rather than the likely futility of the struggle.
But there's another story to be told in these cases, and it's usually the nurse who's the observer of that narrative: the suffering caused by these well-intentioned treatments. Chemo was risky for this patient because of his age and medical history, and the damage done was unbelievably bad.
The problems began when cells killed by the chemotherapy spilled their contents, overloading my patient's kidneys and throwing him into renal failure. The intravenous fluids he'd needed had been too much for his circulatory system, and he developed heart failure, too.
Watching this patient suffer ... because of what we did to him in the name of helping him was agonizing.
--Theresa Brown
One morning, I came in with his pills, and he said, "You're doing too much. I can't take it." The next week, he was on dialysis, but it wasn't working, and his entire lower body was hugely swollen with fluid. That day, he accosted me with, "What the hell are you doing to me?"
Both times, I told the medical team what he'd said and asked whether it was ethical to continue chemotherapy. Several members of the team shared my concerns, and as a group, we talked the situation over with the attending doctor. Our view was that the treatments were eroding the patient's quality of life with little promise of good in return.
The attending physician, whom I know to be conscientious and caring, disagreed, as did the patient's family. When the doctor prodded the patient, saying, "You want to keep going, right? Right?" the patient himself concurred, "Yes, let's keep going."
So the chemo finished. Then, blood began to appear in the patient's urine. His bladder was brittle because of the radiation treatments he'd had for prostate cancer, and because of the chemo, he had too few platelets. Without enough platelets, that fragile tissue would not stop bleeding, but it also formed blood clots in his bladder that caused excruciating pain.
Watching this patient suffer, not from his disease but because of what we did to him in the name of helping him, was agonizing. He'd wanted to "keep going," to "keep on fighting," but what did he really mean?
Always when I hear these phrases applied to oncology patients, I think of Peter Weir's 1981 film "Gallipoli." The film portrays two Australian sprinters, Archy and Frank, who enlist together during World War I and end up fighting the Turkish army at the Battle of Gallipoli.
A lot of soldiers died during the Gallipoli campaign, and the end of the film dramatizes a real battle in which four brigades of Australian soldiers were sent out of the trenches to certain death.
Frank is chosen to be a runner, a deliverer of messages during the battle, and he gets an order to call off the assault once it's clear that it's not a fight but a massacre. However, Frank can't run quickly enough to get the hold order to Archy's trench in time, and the signal to attack is given. Archy comes up out of the trench running as fast as he can, alone, chest forward, until the Turkish machine guns mow him down.
The wasteful sacrifices of war and the pointlessness of my patient's suffering share some obvious parallels here, but there's a deeper lesson as well. Archy and Frank were soldiers; my patient was not. They made a choice when they enlisted, but my patient was never given his real choice, between aggressive treatment that might do more harm than good and getting just enough treatment to keep him stable and allow him to go home to be with the people he loved.
The very real benefits of such a focus on palliative care were documented in the August 19 issue of the New England Journal of Medicine. Patients with newly diagnosed lung cancer who received palliative care in addition to chemotherapy claimed an improved quality of life and lived more than 2½ months longer than than those who had no such care.
My patient's decision to "keep fighting" seemed to be based on a misperception of what medicine could accomplish and of what the personal costs of our treatments would be. Indeed, a month after being admitted, swollen, breathless, bleeding and in pain, with his leukemia as robust as ever, he went on hospice in the hospital and died.
In "Letting Go," Gawande says we don't want Gen. George Custer as a model in medicine but more Robert E. Lee. But I would argue that conjuring a general to guide patients faced with serious illness is an embrace of the wrong ideal. Patients are not battlegrounds, and practicing medicine is not a war. This patient needed thoughtful supportive care, not our ineffectual treatments that tore him up from the inside out as surely as any machine gun.
The opinions expressed in this commentary are solely those of Theresa Brown.

Wednesday, December 16, 2009

Janis Ian, "When Angels Cry"






Wait Your tired arms must rest
Let this moment pass
Wait until the morning
Close your eyes and you will see
who you used to be
left without a warning
Who knew one so big could grow so small
Lighter than the writing on the wall

When angels cry, can I stand by
When stones weep, can my heart sleep
Wish I'd never heard, wish I'd never heard
Wish I'd never heard
the power of a four letter word

'Cause only love will matter in the end
for a woman or a man
What's the difference now
Here we live with bottles
and needles and truth
Here is your living proof
that death cannot be proud
Some say it's a judgement on us all
I can't believe that God could be that small

When angels cry, can I stand by
When stones weep, can my heart sleep
Wish I'd never heard, wish I'd never heard
Wish I'd never heard
the power of a four letter word
If ever was a rose that longed to bloom
If ever was a heart that longed to fly
If ever was an angel, it was you
So close your eyes and say goodbye
Goodbye

When angels cry, I can't stand by
When stones weep, I can't sleep
Guess I've finally learned
Guess I've finally learned
Yes, I've finally learned
that love is just a four letter word
Hope is just a four letter word

Tuesday, December 15, 2009

Have you ever held someone as they lay dying?




I have.  

It has been seven years, and still this memory shimmers at the edges—a standout—and it has since coloured and broken me into a million different mosaic pieces that tell a story only I can fully understand. It is my momma's and my shared memory, and people we know have lived snippets of it with us, and yet the colours and the jagged edges are mine alone to sift through. To make sense with.

November 13th, 2002. Aloha Nursing and Rehab Center. Kane'ohe, Hawai'i. Another time, another place, another life.



I crawled into my da’s narrow hospital bed—tubes be damned—and tucked myself into a fetal position, my ears pressed to his chest, listening to the ragged breaths that I knew would soon fade into nothingness.

“Everything will be okay, daddy. You can let go now. You don’t have to hold on for us anymore.” I said these words even as I wanted to scream and beg for him to fight harder to stay with us. It was 10:20 PM, long after visiting hours had passed. My momma said, and I will never forget, "Hold on, Ron. Wait for us in the morning." But it wasn't about our wants anymore--my momma's and mine--but rather, about what a tired man needed. I looked at my watch as I stood in the doorway of da's room. 10:37 P.M., it declared.  

I dreamt of him that night. My daddy and I danced, bathed in an ethereal white glow. Spin me around, daddy! Spin me around more! I was his darlin' little princess again. Safe in his outstretched hands, I spun around and around, happy to see my da. But then the music stopped and the world, as it had before, became a blur of jumbled backgrounds. I turned to see my da, wanting an explanation, but then, like world, he slowly faded away.
 

“No, daddy! Don’t go! Don’t leave me again!” I stopped dancing, held out my hand to hold onto him, to finish my dream, the place where I could always see him, but then he was gone.

I awoke to silence and knew. Just knew. He was gone. I woke up my momma and told her softly, "Momma, the phone is going to ring, and it will be the doctor or the nurses, telling us that daddy is gone." Half-asleep, momma looked at me and said, "How do you know this? No, no...It cannot be. Your daddy cannot leave us. He..." Before she could even finish the sentence, the phone rang.

My daddy died at exactly 1:17 AM. 

People always tell me that I have the memory of an elephant. Professors have commented that I have a photographic memory. "I wish I had that," one of my mentors said. "It would make life easier!" Well, if I could, I would  give this gift of vivid memories to him. Memories are a double-edged sword. Some memories I am so grateful to have, while there are some I wish I didn't remember so vividly. There are little details in everyday life--seemingly innocuous--that can bring it all back. Triggers, they call it. A song, a word, a scent, a sound. They wield so much power over me sometimes, and I bend. Kneel.  They can send me into a tailspin...down, down, down into a spiral of anger, resentment, and a pain of loss so unbearably sharp I cannot find the words to express. Nobody understands.
June, November, and December are particularly difficult months. Right around Fathers’ Day, I tend to withdraw from the world as I half-drown in a strong current of sadness and anger that my father is gone. He died on November 14th, 3 days after Veterans’ Day and a full two weeks before Thanksgiving. A month and two days before what would’ve been his 65th birthday. Right before Christmas, his favourite holiday. New Year dawned without him in 2003, just as it had from then on and will from hereon after. 




In my dark moments I rage and I scream. Silently. In my head, in my room. Intellectually I know that a vegetative body ravaged by diabetes, stroke, and multi-organ failure cannot possibly endure forever. 18 months was a courageous fight. A miracle. Spiritually, I understand the impermanence of life and the enlightenment of letting go of that which are not ours to keep. And yet the child in me--an eternal half-orphan--sees neither reason or life's cyclical nature: I feel abandoned. Betrayed. How could've my Hawaiian Superman succumbed to the Kryptonite of illness? Wasn't my da the invincible wounded soldier who survived two tours of duty in Viet Nam? What happened to the immortal man who defied two cardiac arrests, a quadruple bypass surgery, and a pacemaker? 


I graduated at the top of my class from a university he had also been accepted to. On a drizzling June afternoon, I stood in front of a podium and spoke to my graduating class about persevering and finding one's worth. My momma cried, especially since I didn't tell her about what I--we--had achieved against all odds. How, despite losing the luxuries and comforts from our old life, nothing could take away what is within us. Da should have been there too, because more than anyone, it was he who gave wings to my intellectual curiosity and pushed me to ascend to the pinnacle of my limitless potential. Everyone tells me that of course he would've been proud of the woman that I am today, but how could I possibly begin to explain these unnamed feelings inside me, this guilt because the sound of his voice saying"I'm proud of you, darlin' " is slowly fading away? 




Sunday, December 6, 2009

Sei Morto*



Ma io sono vivo,
una barca
piccola
perdita
in un mare 
in tempesta chiamato dolore


Sei morto, sei morto
Ma io sono vivo
Sei morto, ma io sono vivo
Sono morto con lei






*Italian is obviously not my first language--nor am I fluent in it. It is, however, one of the many languages my father spoke, hence the effort. 


**I am much better at translating from Italian to English. 

We must never permit the voice of humanity
within us to be silenced. It is Man's sympathy with all creatures that first makes him a Man.

--Albert Schweitzer

Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one's attitude in any given set of circumstances, to choose one's own way.


--Viktor E. Frankl