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The Need for Clarity When the End Is Near

There's no substitute for the difficult conversations between family members before illness strikes

posted by Marilynn Larkin, January 25, 2012 More by this author

woman consoling her daughter

Marilynn Larkin is an award-winning health and medical journalist and editor.


As a primary care physician, I spend an enormous amount of time talking to my patients about end-of-life planning. Most are willing to visit a lawyer and draft a living will or advance directive. Unfortunately, such documents are often vague and don’t help decision making when the time comes. There is no substitute for the difficult conversations that must take place between family members before illness strikes. This story is based on observations of people confronting end-of-life issues.
      
As Sarah flipped through the pages of her mother's advance directive in the intensive care unit's waiting room, she couldn't help but think of her father. When he passed away, there had been no decisions to make, no time for long goodbyes. He had simply said he wasn't feeling well and retired to the bedroom. Thirty minutes later, he was dead.
 
Sarah read the words out loud, but her mind had trouble concentrating on the meaning.
 
“If at any time I should have an incurable or irreversible condition caused by injury, disease, or illness certified to be a terminal condition by two physicians …”
 
She pondered the phrase in the document: "incurable or irreversible.” The doctor said that her mother’s chances were poor, but his voice was tinged with hope. He certainly didn't say "terminal.” And where was she going to find two physicians? Her mother's family doctor hadn't even showed up at the hospital. She was being taken care of by something called a hospitalist.
 
Death Complicated by Medical Science

Sarah's thoughts were interrupted by a nurse beckoning from the hallway. She walked through the ICU entrance and felt exposed under the bright fluorescent lights. Her mother's room abutted the nursing station. As she crossed the sliding glass doors, Sarah’s eyes scanned back and forth. A tube exited her mother's mouth and twisted its way to a machine sitting in the corner. IVs entered and exited her bloated arms, which were pinned to boards like a perverse crucifixion scene.
 
If only Sarah had siblings, or other living family members to share the burden. But she was alone. She felt a pang of emotion well up in her chest but she worked to force it back down. She didn't have time for mourning; she had decisions to make.
 
But how could she become the puppeteer? One wrong movement of her wrist and everything would be lost. Wasn't that the responsibility of a higher power? Hadn't she prayed faithfully all those years? Why now had such decisions become the fodder of her own fallibility?
 
Of course she knew the answer. Medical science had become so advanced that death was no longer simple. It could now be monitored and measured. Now she stood at the abyss with her finger on the button. But the button wasn't a button at all, it was a switch to a ventilator.
 
A Simple Question

Sarah was so lost in thought, she didn't notice the pastor walk into the room and sit beside her. It was only as he opened his Bible that she saw the movement out of the corner of her eye. His voice was quiet and somber.
 
“Would you like some company?”
 
Sarah nodded her head slowly. It was nice to know that another healthy, mentating human being was sitting in the room next to her. He waited silently and read the pages of his ancient book.
 
Eventually Sarah was ready to talk.
 
“Father, I don't know what to do!”
 
He gently placed the Bible on his lap and his kind eyes sparkled with sadness. He spoke with confidence.
 
“The answer is simple. What would your mother say if she were standing next to us surveying the scene?”
 
Sarah paused and waited for the words to come. A great sense of relief washed over her as she felt the answer rise from depths of her being.
 
“She wouldn't want to live this way!”
 
A large explosion ripped through Sarah's chest. Her body convulsed with spasms of grief as the pastor lunged forward to catch her.
 
Relieved of the intense pressure brought on by deciding what to do, she could finally begin to mourn.

To Start the Conversation About Advance Directives With a Loved One

  • Choose the setting. Find a quiet place that is free from distractions.
  • Ease your way in. Talk about a book or magazine article that deals with advance directives, then segue into a more personal conversation.
  • Listen carefully. Your loved one may want to talk about hopes and fears before making any decisions.
  • Talk often. It's unlikely that decisions will be made in a single conversation. Broach the topic from time to time to make sure you've covered all the important points and that the essential decisions remain the same.
 
Jordan Grumet, M.D., is an internal medicine physician in private practice in Highland Park, Ill. His chapbook of poetry, Primary Care, will be released by The Lives You Touch publications in winter 2012. His short stories have appeared in Pulse: Voices from the Heart of Medicine and Medical Economics. He updates his blog regularly and can be followed on twitter (@jordangrumet).
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