Only Life

2014
Chang, Ruoh-Yeng

Winner, AMS–Mimi Divinsky Award for History and Narrative in Family Medicine for a Story Written in English by a family physician.

She was 20 years old with a new palliative diagnosis of cancer.  The wedding was called off because she didn't want him to be a widower.  Classes were dropped.  Trips were cancelled.  Life moved from the movie theatre and her apartment to the 10 room acute palliative care ward.  The word “unfair” seemed completely inadequate to describe the situation but there it was.

In palliative care we often become intimately involved with the patients and their family.  We hold hands, pass tissues, field the big questions and answer the small.  We spend hours talking about pain control options and symptom management.  We strive for every patient to have a "good death"; painless, comfortable, cared for.

My first encounter with her was bewildering.  I was a medical student, bright eyed and full of beneficence.  Prepared to answer all manner of concerns after reading her chart, I politely interrupted a conversation to see how she was doing.

"Fine."  Was all she said.

"Pain?"

"I don't need anything today."

I didn't believe her, but the words were final and dismissive.  Miffed, I withdrew.

Days went by.  Other patients grew dear to me.  With them, I would talk, sometimes for hours. But her? She gave me one, two minutes a day.  Wan, clearly weakening, she was nevertheless "fine." 

I felt like I was doing something wrong.  Maybe she didn't like me?  I tried being more cheerful.  No change.  I tried more solemn, caring, brusque...No change.  I was baffled.

Then the pain got worse.  She wasn't fine.  One wince and I pounced, ready to finally help.

Where did it hurt?  How bad?  How long?  Getting better?  Worse?  More morphine?  Intramuscular?  Did she need a port?  How about a Tylenol?

She didn't answer my questions at all, just stood there.  At first confusion reigned.  Then something in me caught on.

"I'll get you a morphine pill."  The words came out gently, gentler than I had ever spoken for her.  No more questions.  No more worries.  Just dealing with that wince.  I knew that she hated shots.  She hated anything to do with being sick.  I knew that she had refused intravenous lines and wouldn't want a port.  I knew she wanted me to fix it and go.

Stiff nod.

She stood perfectly still in her jeans and sweater.  Her family continued to talk.  Although they were worried, they didn't approach us.  She didn't look at me.  Just waited patiently for the medication.  Once the morphine kicked in she relaxed and rejoined her family as if nothing had happened.  Not a word to me.

I learned to circle surreptitiously.  I learned that morphine questions were for when other people weren't paying attention.  I learned to quietly pick up bags of vomit without a word.

Most importantly – I learned that Life was the only thing allowed in that room. 

Street clothes instead of gowns.  Movies and music instead of tears.  People streamed in and out.  Normal chairs around the bed, not hospital issue.  Piles of cushions and blankets in front of the TV we had to put on the ground because there was no shelf strong enough.

Doctors and nurses didn't belong.  We were reminders of death and illness. 

We expect patients to answer questions, to ask them and interact with us on a daily basis. For her I learned to watch and listen to the quiet cues.  To use all my education and intelligence but keep the process to myself.  We were satellites.  Available at the push of a button but otherwise invisible.

Only life in that room.  Only love and laughter.  Only videos and photos.  Only living.  Even when all she could do is lie in bed they surrounded her with chatter.  She would sleep while her friends rocked out and wake to the same.  Every waking moment of her life was on her own terms.

One day I stopped at the door for an end of the day check.  The gang was curled up in front of the TV.

"Good movie."  She was laughing and gestured for me to sit by her sister.  I took off my white coat and slumped into the pillows. Honestly I remember nothing of the show, so worried about her was I.  I watched her like a hawk, in awe of her brave face and terrified of what she kept inside.

Now I only remember the green grapes.  We ate them steadily.  Every once in a while she would lean to the right and vomit into a lined McDonald's bag.  She did this without blinking.  Without blinking, we pretended not to see.

Death came peacefully.  The only contents of that room were her loved ones and a sunbeam.  She went to sleep and never woke up.

She inspired me.  She didn't live like she was dying.  She died as if she was living. 

More than that, she taught me so much.  She made me realize that sometimes I am more effective to my patients in the background.  That the life I work so hard to make better can involve me the least.  She taught me to be silent and stealthy.  She taught me to let people, even dying people, just live.

Living is what happens when medicine works.  Our work can be like the air, vital but invisible.  Missed if not present, but hardly ever thought about.  She taught me never to forget how crucial the movies, the grapes, and the laughter are to our patients. 

She taught me to bring only life into our rooms.

Theme: Death and Dying | Décès et le mourir
Theme: Family | Famille
Theme: Patients | Patients
Theme: Relationships | Relations
Theme: Teaching and Learning | Enseignement et apprentissage

Stories in Family Medicine | Récits en médecine familiale [Internet] Mississauga ON: College of Family Physicians of Canada. 2008 --.

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