“I Wish They Had Talked” – A Caregiver Story

Editor’s Note: Names and details in the following caregiver story have been altered to protect patient privacy.

My involvement with this patient’s care began after his surgery, after he was unable to breathe without a ventilator.

Tom was a 69-year-old man who had lived a very active life.  He enjoyed hunting and fishing and spending time with his friends.  While reported to be very sociable in public, he had been relatively quiet about his deepest thoughts and feelings with his family.  They all reported that, while obviously a very caring man, Tom seemed unable to share himself with them verbally.

Who is Making Decisions?

Sue, Tom’s wife, seemed unable to make care decisions without the support of her son, Bob.  She portrayed herself as being very vocal and having strong opinions but seemed paralyzed when trying to make decisions for her husband, Tom.

Conversations with Bob concerning goals of care for his dad revealed that the two men had several conversations prior to Tom’s surgery about the chances for his recovery and, in fact, the chances of his survival.

Tom had asked Bob to limit life prolonging measures if he was unable to recover.  Bob knew his dad well and was willing to follow these instructions.  He reassured Tom that he would make sure that his wishes were followed.

Family Meeting

A family meeting was held with Tom’s caregivers and all family members when it became apparent that Tom could not breathe on his own.  His brain function was minimal.  He had a major stroke during surgery.  There was no hope of recovery.

After explaining the extremely limited options, Tom’s health care team turned to Sue and asked, “How would you like us to proceed?”  Sue turned to Bob and said, “Please tell them what to do.  I just don’t know.”  Bob said, “Take away the ventilator.  Dad does not want to go on like this.”

Tom died very peacefully that afternoon.

Six Months Later…

I ran into Bob later in the community.  As we had gotten along so well during his dad’ hospitalization, I wondered how the family was doing.  I asked.  Bob’s answer was so sad.

He told me that while they were all adjusting, Sue was still angry with him about Tom’s death.  She had not talked with her husband about his decisions before surgery and was not sure if she believed Bob’s choices were correct.  Bob said he thought his mom was just looking for someone to blame for her loss.  “I guess I’m the one she picked.”

I wish they had talked…

Join the Discussion

The caregiver story you’ve just read is one that happens all too often around the world, especially here in the United States. Families who may be very close and open with each other on a daily basis don’t often broach the topic of death and dying.

What would you have done if you were in the son’s place? Do you think that Sue’s anger and blame are justified? What about your own health care decisions or those of your patients? Have you discussed them with your family or do you plan to?

Share your thoughts and reflections in the comments below.

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