Go quiet into the night

Originally published on KevinMD

I know what you’re thinking: She’s cold-hearted, cruel, and unkind.

But am I? Or are you?

Grandma Lilly is 87-years-old and in the ICU. She’s on a ventilator with her wrists restrained to the side of the bed. Grandma can barely see because her eyes are puffy: scleral edema. And her heart races: 140 beats per minute. Her blood pressure is low and Levophed and vasopressin drips are ordered.

Her family can’t talk to her as she phases in and out of existence. For her, end-stage renal disease means dialysis. And respiratory failure equals ventilator. She’s a brittle diabetic with uncontrolled fluctuating blood sugars.

Grandma Lilly can’t eat, and we feed her by a tube that goes into her nose and to her stomach. Tomorrow, she gets a PEG tube surgically inserted to feed her. She’s been on the ventilator too long.

Next comes the ICU package: ventilator, dialysis, pressers, restraints, trach, PEG tube.

Any second of clarity or awareness is pure brutality. There’s no pretty ending to this torture except through death.

Poor Grandma Lilly.

Oh, the memories! When we were kids, we’d chant for Grandma Lilly. She’d snuggle us up in that rocking chair and read books to us. Let us splash our feet in the puddles after a misty rain, built sandcastles at the beach, and gave us candy when momma said no.

She was our heart and soul, and we wanted her to live forever. But we don’t live forever.

There’s cruelty in putting an 87-year-old with multi-system organ failure on a ventilator; restrained, medicated, disoriented, and wishing for the tunnel to the hereafter.

“The choice can be yours”

Your memories will live forever.

The ventilator. Churning inspiratory and expiratory breaths … day after day as Grandma Lilly wishes for death.

Grandpa Joe is two doors away from Grandma Lilly.

He’s going to die too from cancer. But he’s led a good life. And he’s cognitive enough to say he wants to die peacefully with his family and his dog Rufus by his side.

Grandpa Joe is a DNR/DNI and has requested to be “comfort care.”

He is given a morphine drip that flows slowly through his vein for his excruciating pain from cancer.

He breathes slowly. But he’s happy and pain-free and surrounded by love. His room is dimly lit. Music seeps out and fills the ICU hallways. Frank Sinatra, Nat King Cole, Ella Fitzgerald and Billie Holiday.

A Boy Scout and an Eagle Scout, he was the only one in his family who got a college degree. We loved his campfires, the stories he told, the wisdom and gentle guidance. And here, his family sat around him. Good old Grandpa Joe. What a life filled with love. They held his hand as they told their loving stories of Grandpa Joe. They laughed and silently wept. Tears of love and happiness and letting go but knowing the pain and suffering of his cancer would be over with soon.

After several rounds of CPR and cracked ribs, little Grandma Lilly died.

Grandma Lilly left this earth tied down like a captured animal.

Grandpa Joe left this earth with quiet whispers of, “I love you.”

The choice can be yours.

Go quiet into the night.

This is our last dance.

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?”

She asked for comfort

Originally published on KevinMD

Mom. She was a feisty 100 percent Italian, straight from New Jersey. Her dad, straight from Italy, was a tailor and made the finest suits for New York and New Jersey businessmen. Mom learned this trade well. She could sew some of the most beautiful tailored suits for herself. She loved to cook and every night was a banquet, a feast which required up to 2 hours of clean-up time by us kids. The food was always delicious; the clean-up was always dreadful.

Mom loved the dinner parties she gave for Dad’s fellow businessmen from IBM. And she adored Jackie Kennedy. She wore her hair like her, dressed like her, as many women across the USA did in the 1960s.

Mom went back to school in her 50s and earned a bachelor degree in teaching. Soon to quit that job after her junior high school kids climbed out the windows when the end of the year dismissal bell rang.

Mom was pretty healthy, high blood pressure, high cholesterol, but always manageable. When she turned 60, she started to have rectal bleeding and abdominal pain. And her once “well nourished” body soon started to lose weight. After a visit and a colonoscopy from her physician, the biopsy showed cancerous colon cells. Soon after that, she was diagnosed with colon cancer.

A colectomy was performed. A segment of her colon was surgically removed. And the surgeon triumphantly announced, “we got all of the cancer.”

One year later, the abdominal pain returned. The liver was suspected. And with a CT scan, a large tumor in the liver was found. She went to a large hospital Institute. The best of the best. The experts. And the surgeon told her there was nothing they could do for her. The tumor was so large it was not operable. What about the “we got all of the cancer?”

Unpredictable, those cancer cells. No one ever really knows when they got it all. A sad truth. The surgeon said, “Get your house in order.”

My father and mother drove home in disbelief. Mom entered a support group therapy called the Can Care Cancer. Unfortunately, she was not alone. She saw small children, young mothers smiling and laughing and bald headed. Each day they had learned to come to grips with their destiny.

Mom did some rounds of chemotherapy but to no avail. The tumor just got bigger. And so after a week admitted to the hospital, she asked to go home. She wanted her bed at home. She made herself a DNR. She requested hospice, and she requested comfort care.

We got Mom home, and she would go into comas, and then wake up. She saw two angels standing behind my one sister. She’d wake up and look out her window and proclaimed, “oh those beautiful dogwood trees” and she’d slip back into a coma. We had to clean mom up; she was unaware of the need for a bathroom. The oncologist told us that if we fed her, we would feed the tumor. The tumor would get even larger and cause excruciating pain. So as a nurse, I understood “don’t feed the tumor.”

But as a daughter, it tore me apart. How hard it is to separate nurse role and daughter role. We three daughters would take turns taking care of mom, along with the assistance of hospice.

Mom woke up one more time and told us of the beautiful angels that were floating around her. I would have never imagined this passageway of death could be so beautiful. Her last words to us were of the angels she saw. And I was comforted by that. She let out a final breath as her arm dropped off the bed. Her once plump body, now very thin. And the wedding ring that she had worn for 43 years … fell off her finger and hit the hardwood floor.

The loudest sound I have ever heard. But I knew mom had landed. Landed into her hereafter.

Peacefully. In comfort. And pain free.

The family said, “Do everything.”

Originally published on KevinMD

They said, “Do everything.”

She knew something was wrong. And by the time she was 85 she had forgotten the names of her children, the town she raised them in, even the name of her deceased husband. In her 70s she was diagnosed with Alzheimer’s. Still coherent, she talked to her physician about becoming a DNR: do not resuscitate. She did not want to live on a machine that would breathe for her, she did not want CPR on her chest, she just wanted to go “home” peacefully. To go home to her Lord.

Instead of entering a nursing home, her son demanded on taking his momma home to live with him. So in her late 80s, she became more despondent, unable to talk, unable to feed herself, unable to go to the bathroom. And her son, who couldn’t wait to take care of her in his home, slowly, ignored all of her basic needs. He’d quietly shut her bedroom door. Johnny had to work. And Johnny had to play. He was too busy to turn her, too busy to clean her, too busy to feed her. And after two years in his home, sweet Mrs. Sally became contractured, bed-ridden and riddled with decubitus ulcers. A neighbor caught wind of potential neglect of Mrs. Sally and notified social services.

When social services arrived, they found Mrs. Sally laying in feces and urine, malnourished and her body cover in decubitus ulcers. Everywhere. Within due time, social services strongly encouraged Johnny to admit his mother to a nursing home.

Mrs. Sally arrived at the nursing home. Unable to eat, unable to talk, unable to walk, and her skeletal body lay in bed with permanent contractures.

Mrs. Sally was ready to die. Her DNR status was current, and the nursing staff gave her the best tender loving care possible. They made Mrs. Sally comfortable, as best they could. They held her hand and talked to her and cleaned her up. But Mrs. Sally never responded. Within a few months, Mrs. Sally showed more signs of deterioration. And one night, her breaths were so shallow, and her pulse was irregular and thready, that the nursing home thought she was dying. The staff made her as comfortable as possible and called the son to let him know that his momma was dying.

Johnny wasn’t ready to see his momma die, and told the nursing home staff to call 911 and send her to the ER. The staff reminded Johnny that his mom was a DNR. Johnny said, “bring her in.”

And so, the EMTs and paramedics arrived at the nursing home to take Mrs. Sally into the hospital. Since Mrs. Sally was now unresponsive, and unable to talk or to make any decisions about her DNR that she signed herself, Johnny was able to rescind the DNR.

And upon arrival to the ER, Johnny and his sisters burst through the ER doors screaming, “Do everything!”

Upon admittance to the emergency department, Mrs. Sally had a thready pulse and gasping respirations, sometimes agonal. Within minutes, a code blue was called overhead in the ER. Mrs. Sally lost her pulse, she was straight lining and had no respirations.

And against our morals, against our compassion, against our need to have dignity to this little lady and her last days on earth, we presented her with rapid CPR compressions; we felt her tiny ribs crunch and break, and her heart rate speed up to a chaotic fibrillation. Ventricular fibrillation is announced by the ER nurse, and she screams, “all clear,” as we force an electrical current through her heart. And we watch her have seizures and loss of oxygen to her brain and leave her with a faint thready pulse and too much time for no oxygen to her brain. And she “survives” these insults that we forced upon her, leaving an anoxic brain in her contractured body.

And the family is pleased: “Praise be, she’ll live to be 100.”

And we, the EMTs, the doctors, the ER nurses and the ICU nurses, bow our heads, because we know we brought torment and pain and assault to this tiny, malnourished lady, who once had a vibrant life. Who once had a full life. But slipped into the tunnel of dying. Almost peacefully, until her family forced us nurses, us EMT and paramedics, us doctors to bring her back. And instead of Mrs. Sally going to her heaven, instead of being in her heaven, and resting in peace forever, We condemned her to a living hell.

Prepare your moms and dads and grandmoms and grandpas and allow them to drift peacefully into that other world.

It is not heaven on earth. It is a hatred left here on earth. A hatred that is hell-bent.

Two days later, Mrs. Sally died on a ventilator in the ICU. We were unable to bring her back.

And her family that said, “Do everything,” were nowhere to be found. Her nurse held her hand, as Mrs. Sally died, on the ventilator with a bruised chest and fractured ribs from her CPR.

If your loved one has reached an end-stage of life, do the right thing. Let them die peacefully.