We have kept Daddy out of heaven with what we have already done

Mr. Omer had once held a position of social prominence, a moral influence on the lives of individuals and communities.  Until one year ago. A construction accident changed everything. He suffered injuries that left him in control of only one side of his body and his mind functioning as a 5-year old child.

Most recently, he had resided in an extended rehabilitation nursing facility, until yesterday.

When the nurse tried to arouse him from an unusually long nap, she could not. Upon orders from the facility’s doctor, he was sent for a CT scan of his head and then rushed to my care in the emergency department.

Mr. Omer arrived to bed 25 and his CT scan report was placed in my hand, “Large acute subdural hematoma with midline shift and … herniation.”

“Oh, my,” I responded quietly and shoved the report into my pocket.

I asked the secretary to page the neurosurgeon as I headed into the room.

“Any family here?” I asked the nurse as I passed by her coming into the room and heading toward Mr. Omer’s bed.

“Only an 18-year old son,” she replied with a look of worry for the emotional well-being of the young man.

“Just a son?” I asked in surprise, as usually there are more senior members of a family present in such circumstances.

“Yep,” the nurse replied, “everyone else is out of town.”

I nodded my head and turned my attention to my patient.

“Mr. Omer?” I asked gently, “Can you wake up for me?”

He snored.

“Mr. Omer!” I raised my voice loudly and rubbed my gloved hand across his chest gently rocking his upper body.

His right eye flickered open for a few seconds, and then closed. The snoring began again.

“Have his son meet me in here, please,” I asked the nurse.

I then completed my examination and began to think of how to discuss the gravity of the situation with someone with limited life experience, someone like an 18-year old boy-man.

I have to admit that I felt a degree of relief when he walked into the room. Only 18, but he carried himself as someone with a great deal of maturity and he offered his hand to shake mine.

I gave him some a few moments to spend with his father first and then I asked him to step out of the room. I wanted to show him his father’s CT scan.

We sat together and I flashed the images before him.

“All of this white stuff is blood and it is pressing on the rest of the brain in a way that could cause him to die if left alone, and there are already signs that his brain is beginning to herniate, meaning swell and push into areas that it should not be …”

I searched his face for understanding.

He sat up very tall in his chair in response to those words and folded his hands in his lap. I wasn’t sure what this meant, but he remained very composed.

Next I said, “I think we should call your mother and other family members who are able to make decisions for your father because right now we have two choices:

i) Have the neurosurgeon to take him to the operating room to drill a hole in his head and suck this blood out. This would likely save his life, but this will not make your father who he used to be before the original accident and there is a strong chance that this will have caused further brain damage given the herniation. I don’t even think he would be “who” he was last week. There is a chance that the surgery might not even work, he still might die.

or

ii) We could allow him to die naturally without surgery. We would do everything in our power to assure his comfort and yours and your family’s.”

I was expecting him to immediately to pick up the phone line that I had already pulled to his side to call his mother, but instead he said, “I have been thinking lately that maybe we have kept Daddy out of heaven with what we have already done.”

I was stunned and felt my jaw drop open. I had never heard anyone respond this way about a potentially dying parent- regardless of age.

He went on, “If he is heading to heaven, then why keep him here like this?”

I’m not sure what I said in response, but we decided to call his mother. She was out of state but had already heard that he was in potentially very bad shape. I gave a brief explanation of what was going on and gave the “surgery or not” options. Then without any prompting or questioning on this point her first words were, “We have talked about this and we want an order for “DNR” (Do Not Resuscitate). We don’t want him to put him back on any forms of artificial life support. He would have never wanted to be kept alive like this and we don’t want to put him through that again.”

The son then asked to talk to his mother.

“Mom, I was just thinking that we should not put him through any more surgeries, if that is ok with you … since we have already kind of talked about this, can we just make him comfortable like the doctor said?”

I know that at this point I had developed a bewildered expression, but after we got off the phone with his mother, I finally choked out something like this:

“I have never heard anyone have so much clarity as you and your family have. I am very impressed with you, young man. You are telling me the very things that I am trying to teach the nation. That there are times when we should, and times when we should not, fight death at all costs.  That there often comes a time when the best and most loving choice is to make someone comfortable and to let them go …”

Just then an uncle entered the room. We caught him up on the family decision to pursue only comfort-focused care, but I felt that we needed to turn the conversation back to the big picture so that he could feel unity with their decision.

I said, “We have entered a strange and powerful time in human history. We have the power to perform near miracles. Sometimes we can bring people back from the brink of death and restore them to who they were, but too often our miraculous technology saves the life but transforms that person’s existence into something they would have never wanted for themselves.”

With this in mind, the question for this moment is this: “If Mr. Omer could stand here and see himself right now and hear this information, what would he want us to do next?”

A quietness filled the room. After a long silence the uncle said, “Nothing.”

He continued, “If he could see himself in this state he would say, let me go. Do nothing more.”

I rocked back in my chair.

“I would agree with him.”

All of the rest of my conversations with doctors and family members were about how and where to manage his dying.  To have family members at Mr. Omer’s bedside and to make it as peaceful as possible.

The day after Mr. Omer’s funeral, a family member posted a picture on the Internet of the formerly vibrant Mr. Omer, prior to his original accident, with the following words: “You are a new man now, Daddy, we love you and can’t wait to be with you again.”

Mr. Omer’s individual story began with him being a person of great influence. I believe his family’s story ends the same way.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.

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  • Nehemiah Spencer

    Excellent story, and a philosophical conclusion with which I agree wholeheartedly.
    Medicine is not magic, but because many people have a magical viewpoint of what medical advances (in general) can do, there are plenty of unhelpful and expensive interventions forced every day that do not substantially benefit the patient.

    Accepting death is just as crucial as fighting for survival. Not having magical thinking is the key step in finding that balance.

  • boucains

    What a great example of “practising what you preach” in the arena of medical care for a seriously injured loved one. My wife and I speak often about the fact that dying is not a bad thing for those of us who believe that life begins after death. We both have given clear DNR instructions when there is little hope of recovery.

  • doe gasque

    I agree- Just because we can save someone, does not mean that we should.

  • houriganterry

    Hi Monica, thank you.
    My effort is to try to arrive at better questions to assist families with no forethought
    who arrive at that point. How could someone produce that result when starting
    with a family who might be in conflict upon arrival? How would you laser – focus in
    to help them make the very best decision they can?
    Thanks,
    Terry

    • drseno

      Questions *are* the key, Terry. I know that Monica may come on to answer this when she gets a break.

      In the mean time, the question about what the person would want; asked within a quiet presence, as Dr. Monica described is a perfect question.

      Did you ‘hear’ how a quiet filled the room when family reflected on this question? That’s key. Also note that the question was asked within the context of information about the patient’s condition and likely outcomes of possible interventions.

      Put those simple answers together with a question to family with no forethought, and you have led them to what they ‘know’ is best for them and their loved one. Hope that helps!

    • http://twitter.com/Oktodie OK to Die

      Hi Terry,
      I think the key to leading family members to unity, if the patient has lost decision-making capacity, lies in the true meaning of “substituted judgement.” Surrogate decision makers should be guided to make decisions based on what the patient would most likely want for themselves, rather than making a decision based on what the surrogate or another family member wants for the patient. This can be tough, but a colleague and I have created a simple question-based tool for guiding surrogate decision makers and whole families to the “right choice” for the patient, so far as it can be known if no advanced directives were left for reference. See if you find this useful, it is a free tool available on my website: http://www.oktodie.com/pdf/Fierros4.final.pdf
      Let me know if you find this of any value in your practice.
      Monica Williams-Murphy, MD

      • houriganterry

        Monica, thanks for answering me. I read the 4 “r’s” and I’m happy to have it.
        I have looked forward to your stories since I started reading Kevin last December.

        Would you mind if I send something directly to you? If that’s ok please send
        me your email address: houriganterry@hotmail.

        Thanks again. A rewarding story. I hope to continue to read about your experiences.

        Terry

  • drseno

    Keep the stories coming. They help change the way it goes. We need that.

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