By Mindy Leake, DNP, PMHNP-BC

When my father was diagnosed with terminal brain cancer, I made him a promise. I told him I would not let him die in a hospital.

I had been an ICU nurse for years by then. I knew what dying in a hospital looked like. The fluorescent lights. The strangers in scrubs. The machines making noise at 3 a.m. The family members standing in hallways being asked to make decisions they were never prepared to make. I had watched it happen to other people’s fathers. I was not going to let it happen to mine.

So we planned. The palliative care team helped him document what he wanted and what he did not want. We knew he did not want CPR. He did not want a feeding tube. He did not want to be intubated. He wanted to be in his own bed. He wanted his people around him.

He died at home, in his bed, surrounded by the people who loved him, the way he asked to. I held his hand. It was sad and beautiful and dignified. It was not a failure.

But it was rare. And it should not be.

Most Americans do not get a death like my father’s. Not because they don’t want one. Because the system is not built to give them one. Nearly 90 percent of Americans say they want to die at home. Only about 35 percent do.

The conversation about how someone wants to die often does not happen until they are already dying. By then, they are in a hospital, receiving interventions no one ever asked them if they wanted.

What we get wrong

In American medicine, we treat death like a failure to live. Every intervention is framed as fighting. Every refusal is framed as giving up. Every family is asked, in the worst moment of their life, whether they want us to “do everything,” as if “everything” were obviously the right answer.

It is not.

The doctors and nurses who work in the system know this. We have watched what “everything” actually looks like, and the vast majority of us do not want it for ourselves. A landmark Stanford study by Dr. VJ Periyakoil found that 88.3 percent of physicians chose “do not resuscitate” status for themselves when imagining their own terminal illness. The physician Ken Murray wrote about this phenomenon in a now-famous essay called “How Doctors Die.” His observation, echoed in years of follow-up reporting, was simple: the people who know the most about modern medicine choose the least of it when their own time comes.

I have asked this question of my colleagues directly. ICU doctors. Hospitalists. Other nurses. I once asked a physician, after she had finished recommending tracheostomy and a feeding tube to a family in our unit, whether she would do the same for her own family. She did not hesitate. She said, “Absolutely not.”

I have never met a single ICU clinician who would want for themselves what we routinely do to other people’s loved ones.

The public’s understanding of life-saving intervention comes mostly from television. On TV, CPR works. On TV, people wake up from comas and walk out of hospitals. On TV, “do everything” leads to a smiling reunion at the end of the episode.

Real life is different. Patients survive interventions only to spend their last months or years in skilled nursing facilities, on ventilators, with brain damage from oxygen deprivation. They cycle between hospital and facility, unable to recognize their own families, unable to do the things that made their lives feel like their lives. The intervention worked. The life did not come back.

None of that nuance gets explained in a hospital corridor at 2 a.m. when a family is being asked whether to put mom or grandma on a ventilator. Instead, we often present life as the only acceptable outcome. We do not say, “She is 87. She has heart failure. Even if we restart her heart, she will likely never come home. And if she does, her quality of life will not be what it was.” We say, “Do you want us to do everything?” And families, terrified, say yes.

What we should be saying instead

Death is not a failure. Death is the only certainty in any life. We will all die. The question is how, where, with whom, and with what kind of awareness.

Dying with dignity in your own home, surrounded by people you love, having said what you needed to say, is not giving up. That is the result of a life lived honestly, ending honestly. It is the most loving thing you can give the people around you, because they will not be standing in a hospital hallway making decisions you never told them you wanted.

Families talk their loved ones into interventions all the time. Out of love. Out of fear. Out of grief that has not yet started but is already there. They override what their parent or partner actually wanted, because they cannot bear the alternative. None of this would be necessary if the conversation had happened before the crisis, when the patient could speak, and when there was time to think.

This is what advance care planning is. It is not a form. It is a conversation, sometimes many conversations, between a person and their providers and their family about what they want, what they do not want, and what they value at the end of their life.

What I want for my readers

I want you to have a death story.

We talk about birth stories all the time. Where it happened. Who was there. What music played. What it felt like. Birth stories matter because they describe the beginning of a life that mattered.

Death stories matter for the same reason. They describe the end of a life that mattered. They tell the people you love who you were, all the way through the last moment.

Most people will never have a death story because no one ever asked them to plan one. They will die in fluorescent light. They will die with strangers. They will die with tubes in their throats.

It does not have to be that way. My father had a death story. He died in his bed, with his daughter holding his hand, having said everything he needed to say. He had it because we planned for it. He had it because I knew the system. He had it because someone asked him what he wanted, and then helped us give it to him.

Every person deserves a death like my father’s. Almost no one gets one. That is the failure. And the fix begins with the conversations we are not having.

Mindy Leake is a psychiatric nurse practitioner.