Comfort in my final hours

Originally published on KevinMD

My name is Lucy.

I have stage IV liver cancer. I wanted everything done — even though the doctors told me this disease is terminal. My family, my church and my friends were praying for “the cure.”

Though I believed in God and the hereafter, I wasn’t ready to go. 74-years-old with beautiful children, grandchildren, and a great-granddaughter.

I woke up confused. In the background — wherever I was — I could hear music: “How great thou art.” One of my favorites.

I had a tube in my mouth, and I couldn’t talk. My wrists were restrained, and I couldn’t move. They had me tied down. Everything was blurry. My chest hurt like someone had pounded on it. People in white coats and scrubs surrounded me. I became aware that I was in a room with doctors and nurses and respiratory therapists.

A man introduced himself. He said he was a respiratory therapist, and he was going to pull the “tube” out of my mouth. The endotracheal tube. I gasped and took a deep breath, and I could barely talk.

The team explained to me that I was in the ICU. And because I wanted everything done to me, I had been emergently intubated, restrained, pain and sedation meds given through my veins continuously. My heart decided to stop, and “the team” did CPR on my fragile body. Because by now, I didn’t want to eat. I had lost over 25 pounds from the liver cancer.

I was told that some of my ribs cracked during CPR. I had pneumonia.

A palliative nurse came to talk to me within a few days. I wasn’t out of the jungle yet.

The palliative nurse talked to me about comfort, about acceptance, about peace and being pain-free and being with my family and friends surrounding me.

Comfort care. DNR, DNI.

New words for me.

I was so sick, so tired, so much in pain. I led a wonderful life.

Now, it was time for acceptance.

I remember those words from my doctors: terminal, no cure, palliative chemo … extending your life.

But at what cost?

Was it worth staying in an ICU in a comatose state? Was it worth having your chest beaten on with CPR and cracked ribs and pneumonia set in? Was it worth being tied down?

I knew the answers.

I was always stubborn. But maybe it was time for acceptance.

Maybe the prayers being sent my way were meant for a peaceful death. A peaceful entrance into the heavens.

I called my family in with my physician, my nurse, and the palliative care nurse.

I begged my family to please not put me on a ventilator again.

Please let me be comfortable.

Please make me comfort care.

DNR and do not intubate and do not treat.

I slept quietly going in and out of consciousness. My sons and daughters gathered around. They laughed and cried and told many fun stories of when they were young! My grandchildren and great-granddaughter held hands as they sang “Yes, Jesus Loves Me.”

Another favorite of mine.

And their tiny voices uplifted me and my soul.

I was surrounded by love.

This time — I was ready.

Who is alive: man or machine?

Originally published on KevinMD

He had cardiomyopathy and CHF for over 20 years. At the time, doctors told him he could die at any time. That was 20 years ago. His EF was 10 percent — barely livable.

Two decades later, this admit kept him on a see-saw with respiratory distress, a bad heart, bad lungs, atrial fibrillation with RVR and heart rate in the 140s all day long. He progressed from nasal cannula to Optiflow to 100-percent BiPAP. A Cardizem drip was added to no avail. His next step would be intubation.

I pulled his wife outside of her husband’s room. And I told her that he wasn’t doing well and we may have to progress to a ventilator, and not to let him drink anymore — aspiration and aspiration pneumonia.

I could see the years of suffering on their faces. The dedication and love they had for each other.

His wife agreed. But 20-minutes later, she came to talk to me.

“We don’t want a ventilator. We’ve dealt with this for over 20 years. He doesn’t want a ventilator,” she said.

I grabbed our intensivist and gave her the heads up. She talked with the wife and the patient who both requested a DNI.

The patient stated he would go through one round of CPR … just one round. A strange request, I thought.

The MD added DNI to the patient’s chart.

An hour later, his wife came to talk to me again, “This doesn’t make any sense to not put him on a ventilator but to do CPR and crush his ribs and hurt him when we know he has a bad heart and lungs. I think it would be cruel! He’s ready to die. He told me so. We don’t want to see him suffer anymore. He just wants to be pain-free. No more pain and suffering.”

I could see the years of suffering on their faces. The dedication and love they had for each other.

Back in the day, we had a universal policy: All or nothing. Either a full code with CPR, intubation or nothing at all. Now patients and families can choose. There are different variables: no intubation but do CPR. Or give ACLS meds but no CPR. Many of these variables/ protocols make no sense to me, but the families and patients get to choose.

I agreed with Mrs. Smith and explained to her as we were surrounded by three respiratory therapists that by not intubating but doing CPR one time was like giving him a car but telling him he couldn’t have any gas.

The respiratory therapists agreed.

I introduced the thought of morphine in small amounts. A 2 mg IV push helps with breathing and anxiety and air hunger.

She agreed. And Mr. Smith was made a DNR/DNI.

The man’s family came from near and far. His sons, daughters, sisters, brothers, his buddy from elementary school, his favorite chaplain and his wife. They all sat by his side and kept vigil. They shared stories of Mr. Smith as they laughed and cried.

As Mr. Smith nodded in and out of consciousness, they held hands and hugged one another as a tear rolled down Mr. Smith’s cheeks.

We made Mr. Smith “comfort care.” And that’s what it means: providing comfort at end stage lung, kidney, heart, liver diseases, terminal cancers and multi-system organ failure.

Morphine was given as needed for comfort.

And we watched Mr. Smith drift away from our universe — the inevitable.

I cry as I write this. But I rejoice in knowing that we did not torment this man with CPR, cracked ribs, ventilator, wrist restraints, central lines and dialysis.

I remember something my husband once said to me,”Who is alive: man or machine?”