Q. Do doctors adhere to “Do Not Resuscitate” (DNR) orders?

A. Not if you override it while you’re in cardiac arrest.

Photo credit: shutterstock_363190757.pdf

I stood at my mother’s bedside trying to soothe her, telling her everything would be all right. From her hospital room, I could see the sun setting over Tampa Bay. How many times had my mother watched that spectacular event since she and my dad moved to Florida in 1974?

Today she couldn’t care less about beautiful sunsets. That was another time, another world. The next day she would have a second open-heart surgery since my dad died. Both times her aortic valve would be replaced with a pig’s valve.

This very morning, before I got her urgent call from the hospital, I’d been teaching outdoor skills to Girl Scout leaders at a camp 1200 miles away in Michigan. There were no cell phones in 1996, so the ranger had to come get me. I hoofed it to the camp pay phone next to the parking lot and called her at the hospital.

Once I’d told my co-trainers that my mother needed emergency surgery, they hugged me and shooed me out of there. Within hours I had driven the 50 miles from camp to home, packed a suitcase, and my husband delivered me to Detroit’s airport.

Landing in Tampa, I had the cab driver take me directly to the hospital. No need to stop at Mom’s condo. I left my luggage behind the receptionist’s desk and ran upstairs to see Mom.

A few years earlier, before her first surgery, I had had time to reschedule my job as freelance writer, to pack carefully, and leisurely find a flight.

I remember we had a good laugh a few days after that first surgery. While eating dinner in her hospital room, she put down her fork, looked up at me and said, “Everything tastes like bacon.” There was a pause. Then, simultaneously our eyebrows lifted as we both imagined the new pig’s valve affecting her taste buds. We would have laughed more except for the zipper of stitches down her chest.

This second surgery, a few years later, wasn’t so funny. Her cardiologist dropped in after my frenetic journey to my mother’s side and asked her how she felt.

“Like crap!” she said, a mix of a pout and anger on her face.

“Oh,” her doctor said. “You’ll recover in no time.”

His confidence sounded like a knee-jerk response.

“Will I get to bowl again?”

As a 78-year-old widow, bowling was the highlight of her week; I’d even seen her flirt with one of the widowers on the opposing team.

Up until my father died, he’d driven her most everywhere. She asked me to help her write the driving directions to the bowling alley and her hairdresser. When done, she held up the paper triumphantly: “These are the only two places I need to drive to!”

Her driving anywhere was remarkable. Not only was she a nervous wreck behind the wheel, but she also learned to drive late in life — in her fifties. I taught her. My heart palpitates just recalling those lessons.

“By the way,” I ask Mom, “how’d you get here?”

“I drove.”

“You drove yourself?” She nodded. “Then where’s your car?”

“In the parking garage.”

“Any idea where?”

“Nope, but here’s the keys. You’ll be able to drive yourself back to the condo tonight.”

Regarding the question about bowling, the doctor replied, “Of course you’ll get back to bowling!”

What arrogance! I tried to give him a side eye, but he wasn’t having it.

When he left, Mom asked me if I still had the (DNR) papers she’d signed before her first open-heart surgery. “Yes,” I said. “In fact, they’re in my purse.” A copy of the main page also hung on her refrigerator and a copy was in the glove compartment of her car.

“Good,” she said. “Make sure they have it on hand.”

The next morning, when her cardiologist came in to reassure her before surgery, we commandeered him to witness and sign an updated DNR. One thing my mother and I had in common was our ability to talk openly about death and dying. We both agreed that prolonging life was not only expensive for the health care system, but also a false hope flooded with pain, angst, and anxiety. We are the minority; we are the practical ones.

Her sadness after Dad’s death was palpable. She’d put on a brave face for seven years afterward, stoically going about her retired life of bowling, golfing, cooking her own meals and visiting with neighbors. She was adamant about never succumbing to depression because, she said, “Once you start down that rabbit hole, there’s no coming back.”

Later that morning, I sat in the lounge during the surgery and tried to read. Impossible. Whether you’re the relative or the recovering patient, trying to focus on something other than health and healing is futile. Hours later I was summoned; I could see my mother now. Hurray!

A nurse led me into an unfamiliar-looking room. Taking in the scene, I stopped, gob smacked. My mother laid flat on her back…on a ventilator; her mouth wide open to accommodate a corrugated tube. Wires sprouted out of her, and machines beeped. I went to her side. Her body squirmed, agitated. The nurse said, “Don’t worry. She’s sedated. Can’t feel a thing.”

I looked at the nurse. “What’s going on here?”

“As soon as she’s stabilized, we’ll move her to ICU. You see, the ventilator is a bridge to the next step toward recovery.”

No. I did not see. This was the last thing my mother would have wanted.

The next day in ICU, walking toward her, I saw she was hugging a Teddy bear. Volunteers give heart patients Teddys to remind them to hug it and cough, to hug it and breathe deeply, despite the pain.

Upon my arrival, she said, “Oh, am I ever glad to see you.” Her voice as well as her words were tender. This was not mother. Once the Valium wore off, she wasn’t so gentle. She was grim. She couldn’t lie flat since fluid would fill her lungs. She felt sick to her stomach. She threw up in the plastic container. After wiping her mouth with a tissue, she looked up at me and said, “Bowling, my ass!”

Weeks passed. I rented a computer to do my job long distance, working at her dining room table each evening after putting in an eight-hour day bedside. She couldn’t stand being alone — she insisted I stay. She was scared and each morning she’d tell me about the awful hours she’d spent trying to get through the night. The room was too hot. The room was too cold. The nurses woke her up. The nurses didn’t check on her enough.

She had no interest in TV. Her skin was waxy, her eyes filled with terror as she grabbed my hand and said, “I can’t do this any longer.” As much as I yearned to hold her, she wasn’t the touchy-feely type. I turned away, feeling helpless.

I bought a cassette tape deck and brought music she and my dad loved: Frank Sinatra, Bing Crosby, Eydie Gorme and Steve Lawrence. I thought the music would bring back good memories. I’d envisioned the music soothing her, relaxing her into her pillows, shutting her eyes and feeling gratitude for all the good times. She ordered me to turn it off. “Get it out of there. Right now!”

My mother had gone down the rabbit hole. There’d be no return.

One day as I sat in a chair bedside listening to her complain, loud beeps and bright lights permeated the room. We looked at each other. What was going on? A crew of nurses and doctors came running in and started working on her. She lost consciousness soon after. They shoved me aside and pulled her bed out of the room.

“Where are you going?”

“Cardiac care.”

“Why?”

“Cardiac arrest.”

Running after them I pulled the DNR from my purse and waved it above my head, but their backs were to me. They wouldn’t listen to me, wouldn’t let me follow them. Protesting, I was put in an empty lounge where I paced. After a while, I came out and found a nurse’s station and showed her the DNR. She shook her head.

Once my mother was resuscitated and doctors started filtering into the hallway. I asked, “Why did you resuscitate her? She has a DNR!”

The doctor said, “She gave us permission.”

“What do you mean she gave you permission?”

“Yes. We asked her if she wanted help and she said yes.”

“While she was in cardiac arrest?”

Long story short. And this is the cautionary tale. While my mother was in cardiac arrest, struggling to breathe and stay conscious which would last all of several seconds, medical staff (none of whom were her cardiologist) asked her if she wanted help? What the hell? Of course, she wanted help! What did they think she would answer?

The next time I talked to my mother — I don’t remember when; all the days had merged together by then — she was in a bed, conscious and sitting up in the cardiac care unit.

When her doctor came in, she asked, “Why am I still alive?”

He told her that when she went into cardiac arrest the attending physician asked if she wanted to be resuscitated and she’d said, “Yes.”

“Oh, shit!”

“So, this is my fault?” she asked, glaring at him. “I have a DNR!”

“But you’re alive! Aren’t you happy you pulled through?”

The look on her face should have frozen him into a statue.

She was released from the hospital in May, and I took care of her in her condo until I couldn’t do it any longer. Husband, job and children needed me. Mom and I flew to Detroit in June and she took up residence in my house where I continued to care for her. At least she could have company and occasionally see her college-age grandchildren. A hospice nurse came, Vivian, a saint by every standard. My husband, children and Vivian brought her solace. She’d perk up when they were around but at night, I heard her crying and moaning in the guest bedroom next to ours. When I was alone with her, she was sullen, sad and angry. Since she’d driven herself to the hospital, she lived seven months.

She died on November 8, 1996.

During those months in Michigan, I wondered how many times I could tell her I loved her. How many times could we go over her dying wishes? We got on each other’s nerves. She accused me of talking more to my cats than to her. And sadly, she was right. The whole situation brought both of us down. Neither she nor I needed extra time to say “goodbye.” All I felt was heartache watching her suffer day after day.

Twenty-one years later, in 2017, I read in the newspaper about an unconscious man who was brought into a hospital. His chest was tattooed with these words: “Do NOT Resuscitate” followed by his signature. Guess what happened? He was given life-sustaining medication because they considered that maybe he had changed his mind. Meanwhile, his case was brought to the Ethics Committee of the hospital. He died that night.

Turns out the doctors did the right thing for him. They did not put him on life support while the Ethics Committee pondered his right to die. After all, he had emphatically told them — via a tattoo on his chest — exactly what he wanted them to do. https://www.theatlantic.com/health/archive/2017/12/what-to-do-when-a-patient-has-a-do-not-resuscitate-tattoo/547286/

But here’s something a lot of people, including the tattooed man, do not understand: A DNR IS ONLY GOOD IF YOUR HEART STOPS. It cannot stop other treatments from being performed.

When I talk to doctors about this, they enumerate a few stories of how happy people are to be alive despite having had a DNR. Yes, that’s what doctors hear the DAY after such a life-saving event. But my question is this: How many of these doctors follow the patient home and take care of them afterward? Would their opinion of “life at all costs” hold water if they were the ones who had to care for people who were dying before their eyes?

Yes, I can imagine the heady rush medical staff get when they hear patients thanking a doctor’s decision to override a DNR.

Let me be clear: I do not advocate signing a blanket DNR when you’re healthy. What if you’re in a car accident and a day or two on a respirator can indeed not only save your life but also allow you time to heal and get back to normal?

I am advocating DNRs only for those who know their life is nearing its end and for those who have health issues that are not going to resolve or improve over time.

This is a personal choice. That’s why each person’s choice should be respected.

Today, people have taken to wearing DNR (Do not resuscitate) and DNI (Do not intubate) bracelets. From what I understand, doctors are starting to respect these initiatives and people are starting to bring doctors who ignore them to court.

The problem comes in when you’re conscious but going into cardiac arrest and the staff asks if you want to be “helped” or “resuscitated.” My mother would have wanted to say “no” but there was so much confusion in those precious few decision-making seconds.

NOTE TO DOCTORS: IF A PATIENT HAS A DNR, DO NOT ASK THEM IF THEY WANT TO BE HELPED RIGHT BEFORE THEY LOSE CONSCIOUSNESS.

My mother has been gone now for 25 years. I still burn up thinking about how much she needlessly suffered.

Meanwhile, I’m training myself to say “NO!” in case I’m ever in the same position my mother was in.

P.S. A DNR IS ONLY GOOD IF YOUR HEART STOPS. It cannot stop other treatments from being performed. If you want to get everything in writing, there is a new form called POLST (https://polst.org/).

born tricked out with anxiety, a reluctant traveler (www.areluctanttraveler.net), writer of travel memoir, facilitates writing workshops, loves hearing stories

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