How my parents died (and how you can save yours from the same death)

If your parents are older, it's time to talk to them about a DNR order.

Neither of my parents wanted their life saved by extraordinary means. Neither wanted to be on life support. And neither wanted to be kept alive indefinitely with machines.

And yet, they both received CPR.

When they needed cardiac resuscitation, they should have been allowed to die instead of being resuscitated. But that didn’t happen for either of my parents despite them both signing forms called, in Florida, a Do Not Resuscitate Order, or DNR.

First—what even is a DNR?

It’s a specific form from the Department of Health that must be signed by a physician and indicates that a person does not want to be resuscitated in the event of a cardiac or respiratory emergency. If your parent signs a DNR, this means they do not want paramedics to give CPR if they aren’t breathing or if their heart stops.

To make it easily identifiable to a paramedic or health care professional, it is often printed on bright-colored paper. In Florida, it is only valid on yellow paper, so if you make a copy, you have to print the copy on yellow paper.

Some states or hospitals may have different names for the form and the process, such as DNAR (Do Not Attempt Resuscitation) or AND (Allow Natural Death), or they might require a more comprehensive document, such as a POLST (Physician’s Orders for Life-Sustaining Treatment).

Why wouldn’t someone want CPR?

Television shows have given us the false impression that lots of people survive CPR and go on to be completely healthy. When researchers asked participants how likely they thought it was that a 70-year-old would survive after receiving CPR outside a hospital, more than 90 percent of the participants overestimated.

In researching this newsletter post, I talked to Liz Stokes, the Director of the American Nurses Association Center for Ethics and Human Rights, who is an expert in CPR.

“It's not like it is on television. On television, it's magic,” she said. “You know, they put the paddles on and, boom, and they're up and they're talking, and it's much more involved than that.”

In real life, it involves pushing hard on the chest over and over and over again to restart the heart. Sometimes, Stokes told me, the person’s ribs get broken. It hurts.

A lot of the time, nurses and doctors do this out of view of the adult child, behind a curtain, in a room at the back of the ER, or in the nursing home, but sometimes, hospital staff will allow the family to see the extent of what is being done to save their parent.

“And the research has shown that when people actually witness what CPR really is, they want it to stop,” Stokes said. “They want it to end because it can be what we would consider quite violent.”

When you’re really old or have severe health conditions, such as cancer or congestive heart failure, like my parents, your chance of survival after CPR is pretty low—maybe 10-20%—and you’re likely to have sustained damage to your organs or brain.

And after chest compressions, the patient will likely need medications, an IV, monitoring, and maybe intubation.

“And then at this point, they will not be able to talk or communicate,” Stokes said. “And so that's, again, very challenging because you want to say, ‘hey, is this something you would want?’ But they're not, you know, in those moments they're not able to communicate their values to you as well.”

To avoid all that, you get a DNR order, and then no CPR is provided, no life support is used, and no life support must be discontinued by distraught adult children. If you put off talking about what your parent wants at the end of their life, the decisions will all fall to you or your siblings. It’s essential to have these “what if” conversations with your parent before the time comes—maybe years before the time comes—that they’re necessary.

My DNR Experiences

Both my parents had DNRs, but neither were followed for different reasons.

In 2007, my mother’s death was sneaky. About three weeks prior, she’d been diagnosed with terminal thyroid cancer. Her blood pressure was dropping, she could feel her body failing, and we took her to the emergency room. I have a specific memory of my father saying, “We have a DNR but we aren’t ready to—we don’t want to—use it yet.”

He begged for more time. We don’t want her resuscitated when she’s dying, imminently, but we want her resuscitated now, because it’s too soon, we aren’t ready, we need her. They wheeled her on a gurney out of triage, behind swinging orange doors, and I never saw her alive again.

A patient or their health care surrogate can rescind a DNR order, at least in Florida, by voicing that they want to rescind it. In technical terms, this is what my dad did by imploring the doctors to save my mom. They tried, but she died right there in the ER.

In 2021, my father’s death was also sudden. I’m still not entirely sure what happened. The nursing home told me that he was given his evening doses of medication, but seemed to choke on the pills and was unresponsive for nearly a half hour before paramedics were able to resuscitate him and drive him by ambulance to the closest hospital. At that time, he was alive, but intubated and unresponsive.

My husband and I left our baby with a friend and rushed to the hospital. I had to decide whether to have them run more tests, wait it out, or ask that the machine breathing for him be turned off. Because the CPR had been “successful,” it was as if there had been no DNR at all.

“Maybe we can do a CT scan? To see if there’s brain damage?” a doctor asked me, just to buy me some time. I talked it over with Ivan, and we decided, sure, wheel him out, have the CT done. We needed a pause button, so we asked for more information.

The CT showed some evidence of past strokes, but no extensive brain damage, so we still had to decide what we wanted to do. Would he want to stay on the ventilator a bit longer?

I held his hand and asked him: “Daddy, you don’t want this, right? I don’t know what to do.”

After hours of fretting about it throughout the night, we let them give him more and more morphine and remove the breathing tube. With the two of us next to him, he let out one last, exasperated-sounding sigh, and died.

My father’s death was traumatic for me, not because it was entirely unexpected (he had been sick for years and in and out of facilities) but because it was more abrupt and painful than I could have envisioned.

I had to make those decisions because his life had been prolonged by the CPR he received because there was no DNR for him in the facility. I think what happened was that, because all this was happening during the pandemic, I wasn’t ever able to visit his room at any facility. I wasn’t there to see the yellow sheets of paper taped to other doors and ask why his door didn’t have one.

It turns out that you have to redo the DNR when your parent changes facilities; you have to make absolutely sure that every facility, every provider, is aware of your parent’s end-of-life wishes. Your parent will probably get a new physician when they enter a new facility, and that person may need to sign a new DNR. I think if I had known that, if I had ensured the DNR order was on his door in the new facility, I would have saved myself the heartache of making those final decisions. He would have died in that facility, rather than having his life prolonged for seven hours in the hospital.

How do you go about getting a DNR?

If your parent is competent, they can sign their own DNR (or POLST, or whatever form your state has.) If they have lost the ability to understand such things, but you are the health care surrogate, you can sign the form for them. I suggest working with your attorney to become your parent’s health care surrogate early on in your caregiving journey, far before your parent might require a DNR order, to make this easier down the line should it become necessary. You’re 32 and your parent is barely 60? Great, you can do this now. Your parent does not have to be incapacitated or even ill to name their health care surrogate. They can always change who it is later.

What’s the difference between a DNR and a living will?

A living will is a more detailed description of what medical treatment a person wishes to consent to, and a DNR may be part of that. It’s different from a will, which details who gets what property and money after a person’s death. It’s confusing that these two documents are so different but have the same name. Your parent may be able to fill out their living will on their own, or it may need to be notarized, depending on your state. There are some helpful resources here on how to think about health care choices your parent may face at the end of life.

Why do you need a living will?

Your parent’s living will is crucial in that it takes key decisions off your shoulders. Do they want to be on a ventilator? If they have a stroke and can’t eat, do they consent to having an IV placed? A feeding tube? If your parent does not have these decisions spelled out in this document, you will have to decide. For me, when I arrived at the hospital, my dad was already intubated. He was already receiving fluids through an IV. I wasn’t there, there was no living will present, so they did everything they could to save him.

Then, it was my responsibility to undo all these decisions, one by one. Do you want to continue the ventilator? Do you want to do a CT scan? Are you okay with him receiving morphine? Each choice was a heartbreaking reminder that it was all my responsibility. I couldn’t say, “Daddy, what do you want? Do you want the CT scan and the breathing thing? You might suffer here and be miserable, or you might get a few more months with your grandson, what do you think?” The time to ask your parent these questions is now, not when you arrive at the hospital at 10 p.m. and a machine is breathing for them.

But it sounds like a lot of work.

Let’s say you had some of these conversations, but you never went through with writing it down, or getting the thing notarized, you never filled out the health care surrogate form, you never asked a lawyer to help you out, and you never got a doctor to do the DNR order. Ask the questions anyway. If you have a living will document prepared, even if you can’t go through the process of notarizing it, even if it’s not official, you will at least have your record of what your parent wanted, and you can make the decisions based on these wishes. I was pretty sure my dad didn’t want to have a machine breathing for him. I was pretty sure he didn’t want to be connected to an IV. I was pretty sure he would want me to end his suffering. But “pretty sure” isn’t good enough in the moment when the decision is yours and it’s final.

ACTION STEPS

• Start talking to your parent about their end-of-life wishes. Use a living will template to ask them the key questions.

• Work with an elder law attorney to name your parent’s health care surrogate and power of attorney, and to start or manage their will.

• Ask at a doctor’s appointment if they have a DNR form or if you need to print one yourself (on the yellow paper!)

• After you have a DNR order signed by your parent and their doctor, place it somewhere prominent in your home, maybe on the refrigerator or on their bedroom door.

• At each new facility, ensure a new form is printed and displayed prominently. Some places might do colored bracelets for patients with a DNR on file. Ask how it works each time your parent moves.

• Consider involving a geriatric care manager. Search via ZIP code for professionals on the Aging Life Care Association's website.