Even close to death, each patient deserves compassion
There is a lesson with every patient I see. Some of these lessons have been simple but effective. Others have moved me to tears and shaped my practice. But only a handful of them have been profound enough to change me both as a physician and as a person. The lesson I learned from caring for Thelma was one of that handful.
Kind, delightful, and cheerful were the words used to describe the 75-year-old patient who had, the week before her final hospitalization, enjoyed relaxing evenings with family and friends. Her life changed quickly when the former beauty queen lost the small remnants of function that her illness had not already stolen. For three weeks Thelma battled aspiration pneumonia, but with no hope of recovery hospice was recommended and she was transferred to my hospital's TCU to live out her remaining days.
I was the admitting hospice physician and I went to see her late on a Wednesday night after finishing up in my office. I was tired, hungry, and irritable. I preferred going home and having dinner with my husband and daughter.
I entered the room, walked to the bed, and looked down at what was left of Thelma. Lying on her back, covered with a hospital sheet, only her head and part of her right hand were showing. Her face, even emaciated, was beautiful. Cheekbones, high and sharp, framed a long slender nose and full lips, untouched by time. Her hair was shoulder length and red - obviously the result of bottled color. Her left eye was slightly open, while her right one was closed.
I introduced myself, though I doubted she knew I was there.
"Thelma, my name is Doctor Suarez and I am going to examine you."
I reached over her and flipped on the light switch behind her.
Her mouth was slack and hung open. The teeth, her own. Dentures would have been long removed, leaving lips that draped over toothless gums. I gently lifted the sheet. Instead of a hospital gown, Thelma was dressed in a simple yellow nightgown. Her arms were nothing but skin-draped bone, contracted at the elbows and lying on her chest. I picked up one of her hands and examined the long manicured nails painted a dusty rose.
She had a pillow between her permanently flexed knees and she wore protectors on her heels. I lifted one of her feet and examined the smooth, soft skin, shiny from the oil that had been recently applied. Her toenails, dusty rose to match her fingernails, were long, but not from neglect, and the cuticles were trimmed and tidy. Thelma was a woman who was lovingly cared for.
Finished, I pulled the sheet up to her neck and switched off the light.
"Good night, Thelma."
Back at the nurse's station, I poured over voluminous medical records. Thelma had progressive supranuclear palsy, or PSP, a rare neurologic disease that can initially resemble Parkinson's disease. Gait changes, slowed movements, and eye problems are some of the symptoms that prompt patients to seek medical help. Unlike Parkinson's, however, PSP does not respond to levodopa. Within three years most patients require the use of devices such as canes, walkers, or wheelchairs. The diagnostic features are diplopia, difficulty opening eyes, uncontrolled blinking, and gaze abnormalities. The disease also affects swallowing and predisposes the patient to aspiration pneumonia which usually results in death. The disease is relentless and robs patients of all ability to move, rendering them completely dependent on others. I noted from the charts that Thelma was not married and had no children. A niece, Ann, and Ann's husband and their children, were her only family.
I finished my note, dictated it, and went home. My family was asleep and I ate dinner alone.
The following day was a busy one. I had seven hospitalized patients. I started rounds early but didn't finish, so I returned to the hospital after 12 p.m. I still had not finished rounds when I returned to my office at 2 p.m.
Around 3 p.m. I received a call from Thelma's nurse reporting that Thelma had been shaking for the past several hours, but she was afebrile and her vitals were stable. Thinking she was in pain, I ordered 5 milligrams of liquid morphine. The nurse called me two hours later to report no improvement. Thelma's niece was asking if I would be in soon. I became irritated and ordered another dose of morphine. I told her I'd be in when I was done seeing my 23 office patients and when I had completed my hospital rounds.
I got to Thelma's room around 7:30 p.m. and I found a woman sitting at the bedside holding Thelma's hand. I introduced myself and learned that she was Thelma's niece, Ann.
I looked at Thelma. Those tremors had not been there the night before.
With tearful eyes, her niece looked up, "What's wrong with her?"
Only three weeks before, Ann said, Thelma could communicate. "She couldn't talk, but we understood."
Thelma's face, which was slack the night before, now appeared taught.
"Was your aunt in any sort of pain before or during her hospitalization?"
"Is she an anxious person?"
"My aunt is the happiest person I know."
It was then that I noticed a small movement in Thelma's open left eye.
I asked "Thelma, could you blink your eye for me?" To my surprise, she did.
"Thelma, blink for yes and do nothing for no. Do you understand?" She blinked. I was stunned. Yesterday I assumed that Thelma was incapable of communication.
"Thelma, are you in pain?" Nothing.
"Thelma, are you scared?" And there it was. Just the hint of a blink. I repeated the question and she blinked again.
"I am going to give you something to help. Would you like that?" Blink.
I looked at her niece and she looked up at me, hopeful.
I went back to the nurse's station, wrote an order for scheduled Ativan, and asked that the first dose be administered immediately. I looked in on Thelma minutes later and I asked her if she felt better. She blinked "yes." Then I went home.
I checked on Thelma first thing in the morning. She looked peaceful and relaxed. She had had a good night.
Thelma died that evening with her niece and her niece's family at her bedside. I called Ann later that night and she thanked me for caring, because Thelma died peacefully.
But it could have gone differently. Long work hours made me irritable, resentful, and impatient. A few minutes was all it took to ensure that Thelma did not die scared and trapped in her motionless body. Even now I can't bear the thought.
No matter how bad my day has been I remind myself that I am not the one confined to a hospital bed, dependent on my physician for help, and at the mercy of my physician's mood. From Thelma I learned that we are alive until we take our final breath and we deserve caring, compassion, and comfort until the end. An extra minute, a caring word, is sometimes all it takes to make a difference in one person's life. An extra minute, a caring word, is sometimes all it takes to remember to cherish the job I do.
Yolanda Suarez, DO, is board certified in both family medicine and hospice and palliative care medicine. She works in a private group practice and serves as the medical director of High Desert Hospice in Klamath Falls, Ore. She may be reached at firstname.lastname@example.org.
This article originally appeared online, July 2011, onPhysiciansPractice.com.