The Ugly

Written by: HPMFellow

The good and the bad. I had seen both sides of death before considering a career in helping people live and die better. The love of a family that comes together to make their loved one’s passage a smooth journey. The unfortunate wedge of unresolved transgressions that can tear another family apart when emotions are running high. But the good and the opportunity to do good has always outshone the bad for me in this field as I like to think it has in life.

But sometimes I forget that even when everything is done right in a situation made to ease one’s passage surrounded by love and goodness, a natural death can still be ugly.  It’s the exception to the rule, but it doesn’t make picking up the pieces any easier.

He had just turned 39 years old. The week before he had been considering further chemotherapy for an aggressive neuroendocrine tumor that had just been discovered 6 months prior. He decided along with his oncologist that he first needed some time to recover his energy and optimize his symptoms before undergoing more aggressive therapy, and it was then that he had enrolled into our home palliative program. Within a day his wife had called his oncologist to discuss his rapid decline. They decided hospice may be the best option now.

I met this man four days ago after a weekend of accelerated physical decline. As I entered his modest apartment with my attending the first thing I noticed was his gaunt 39-year old body shifting back and forth uncomfortably from a sitting position to lying down on the mattress in his living room. The next thing I noticed was an open door down the hallway – decorated cheerfully in green and purple for what I assumed was a young girl.

“Turn it off, now,”  I thought to myself, tucking away any thoughts of my own daughter. “Turn that off, and turn on what he needs.”

I crouched down and had a conversation with the man and his family. He was experiencing terminal agitation, and had increasing pain. We gave him some more Ativan, some more morphine, and some ice chips to wet his lips. He was lucid despite it all. Joked, “I’ve seen better days” in response to the worn, “how are you feeling?” I knew I had to be careful with my words – not just because these would likely be his last hours, but also because I knew his wife would probably replay the day in her mind for weeks, and maybe even years to come.

I glanced at the man’s bright pink POLST form  – “full code,” selected across the top, signed just three days prior. I waited until his breathing became a little more regular, and he paused to open his eyes again. At a loss for words I tried the truth. “I want to ask you an important question. I understand it was your hope to become stronger to get more chemotherapy, but unfortunately your body has become too weak.“

“Is this the end?”

His wife turned her head in an attempt to hide her tears.

“It’s the beginning of the end, yes. You’re dying. You have told nurses and doctors before that should your heart stop beating, and you die that you’d like us to try to bring you back to life even if that means there’s no guarantee that it would work, and understanding that we might hurt you. Your body has changed so quickly, and I know it’s impossible to think about, but it’s more vital now than ever. I must ask – is this still what you want?”

He closed his eyes again, “Yes. Do it.” This time his wife didn’t hide her face. She asked, “Honey. Are you sure you want to die like that? In the hospital? Away from me?”

He closed his eyes again. Then slowly, “No. I don’t want that. Just let me go. Just make me comfortable.”

His wife nodded and sobbed again.

“What – besides comfort – is the most important thing to you right now?” I attempted.

“Just my family. And my friends.”

I excused myself to the next room over to give them some time together. I heard her call a couple of close friends. His parents were on their way from Arizona. We spoke to his mother-in-law who had been there to support her daughter. She told us how she had lost her spouse as well. She relayed that her daughter had just quit nursing school to be with her son-in-law during his illness. She told us the man’s daughter – just three years old – was staying with her the past few days. “How do you tell a three-year-old her father has died?”

Before I could manage a humble response her shouts filled the silence – “Is this normal? Doctor!”

The ugly. He had turned on his side and vomited profuse amounts of old blood. The life was leaving his eyes. My attending comforted his wife, and I held him steady as he took several last agonal breaths.

“Is he gone? My love! I love you. I love you.”

He died. We offered to clean the body of the man. His mother-in-law provided towels while she continued to comfort her daughter. One of the towels I used to sop up the coffee-ground blood was a toddler’s hooded towel – pink and cat-shaped. I placed it in a trash bag with the rest of the soiled bedding. Part of me wanted to try to get the marks out of the child’s towel, knowing she’d ask for it later. But I thought if the stain couldn’t lift it would be painful for both daughter and widow. It was too late to erase this memory for her. But maybe I could eliminate some reminders.

After leaving his residence I didn’t cry – atypical for me. Just reflected for a long time before driving off in my car. The breeze felt softer when I rolled down my window.  The sun’s warmth retained on my driving wheel felt kind. I watched a kid walking with his father across the street – cheerful and seemingly untroubled. An almost cruel juxtaposition to the events I had just beheld in another’s life.

At the least – I hoped that not being alone at the end gave this man and his family some degree of comfort. And I reflected on how precious is life. And how beautiful. And how ugly. And good. And unfair. All at once.

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5 thoughts on “The Ugly

  1. This really touched me and brought back similar powerful experiences. The ‘pink towel’ is such an evocative image, helps us all to understand the depth of this story.

    Thank you

    • Shazzahudson thank you for your feedback. The author of this entry is a Hospice & Palliative Medicine Fellow who I know will appreciate the feedback. This entry brought me to tears especially the part that you mentioned. I think it really touched me because I’m close to the age of the patient and I have small children. My heart goes out to the wife, daughter and family.

  2. Pingback: The Ugly | Hospice Physician’s Blog | All Things Palliative - Article Feed

  3. This is a beautiful post. I wept. There are people in the UK looking at introducing POLST style forms here. Your story is an important reminder that compassionate care means being constantly responsive to changing situations and needs. Thank you so much for sharing your experience. It’s truly valuable.

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