I had just put him on a ventilator. Mr. Barnes (not his real name) had come in by ambulance sweating, barely responsive, gasping for air. The paramedics said he was from the local rehabilitation hospital and had just been sent there 2 weeks ago after a protracted hospitalization for a stroke which had left him partially paralyzed. Then they showed me medical orders indicating that he was “full code,” medical lingo for “put a breathing tube in him if his breathing fails.”

And, it was failing.

I had just put him into a drug induced coma to place a tube down his throat and into his airway to breathe for him, when his family arrived to the emergency department. I quickly checked an x-ray of his chest before I went to the “family gathering room” to meet them.

“Pneumonia,” I said to myself, “looks like he aspirated (inhaled food or secretions into his lungs).”

“Start these antibiotics and I’ll be right back to write more orders,” I told the nurse who was removing his drenched clothing, saturated in the sweat of a man who had been working very hard to get very little oxygen into his failing lungs.

When I opened the door there were 3 people in the family room: a woman who was Mr. Barnes’ wife and a couple in their mid-50’s—a son and his wife. Abruptly stopping their conversation, they turned to look at me with quiet dread. I recognized their expressions, it’s the same one I see each time I have to visit a family in the “family gathering room.” Here, they are gathered by my staff to hear serious news about someone they love. When I open the door, everyone catches their breath; eyeing me to interpret my body language, trying to know beforehand what I am about to say.

“He is very sick,” I began to explain. Sitting down beside his wife, I began to give details of his respiratory failure and how I had followed the medical orders sent from the rehabilitation hospital, by placing him on an artificial ventilator machine. After reciting what I had just done to Mr. Barnes, I paused, preparing to shift the conversation to how we should proceed next.

During my pause, Mrs. Barnes turned her gaze from me to her son, “I should have taken him home,” she said.

“What do you mean by that, Mrs. Barnes?” I asked rather quizzically.

“He wouldn’t want to be here like this,” she said. “He didn’t even want to be in the rehab hospital. When I was visiting with him earlier this week, I pushed him outside in his wheel chair for some fresh air. On the sidewalk, he held his hand up for me to stop in front of our parked car. He looked at the car and then looked at me, and said ‘Let’s go home.’”

She surprised me by pounding her fist onto her thigh.

“If I was half of the woman I used to be, I would have done it! I would have just put him into the car and gone home,” her voice trailed, with regret.

“But, the doctor said that he would get stronger and that he could come home in better shape when his rehab time was up. Instead, he was getting worse rather than better and now, here we are back in the hospital.”

She lowered her head and looked down at her lap, as if in defeat.

I was moved. Her strength and her regret were so powerful that I knew our conversation could be very different than the ones I normally have in this type of situation. So, rather than my typical lead in’s to end-of-life conversations, I just cut to the chase.

“Mrs. Barnes,” I reached to hold her hand, “I’m very sorry that your husband has ended up here in this critical condition. But the most important thing that I can tell you at this moment is that you are in charge, not me or any other doctor, or the hospital or the system. We will not do anything that you do not want us to do. People often feel swept up by what the doctor wants to do next or what the expectations are. But we own our bodies and get to make decisions for our care that lead us to where we want to be. I hear you saying that you just wanted him home and that he just wanted to be home. Regrettably, I think he is too sick for me to make that happen right now, if I remove the ventilator he would die right here. But, the big picture is that he is dying no matter what. If you take a stroke and add further debilitation and add a large aspiration pneumonia, this is a pattern that means he is dying. Your choices for him now are about what you think he would want us to do next.”

She was shaking her side to side, staring into the distance down the hall. “He just wanted to die at home.”

“We all do,” I said. Quoting medical literature, I explained, “90 percent of us want to die in our own homes, but nearly 80 percent us die in hospitals or nursing homes. Whenever I talk to families in this room like you guys, the majority of them wish they had made different choices a few weeks or even months before. The problem is that we doctors don’t speak the truth. We don’t tell people where they really are in curve of life, so you don’t have the knowledge and resources to make the decisions to get your loved one home for the dying process. The medical system has failed you and it has failed Mr. Barnes tonight. I am keeping him alive with my machines, in a state and in a place that neither of you wanted; but you were never asked the right questions so that you could make the right plans. I am very sorry.”

***

Don’t let this story happen to you or someone you love. Your doctor is unlikely to freely offer the following information. So, take the responsibility yourself, and ask your doctor these 5 questions to take a different end-of-life path than Mr. and Mrs. Barnes:

1. How do people typically die from ___(stroke, heart attack, etc. or any disease)____ ?

2. If this was your mother or father, what would you do next?

3. How will we know when to ask for hospice care?

4. What are the signs of dying?

5. Can you support us in trying to take our loved one home?

If your doctor is unwilling to engage you in answering these questions, or is unable to support you, then find another doctor who can. The whole quality of the end of your life depends on it.

Monica Williams-Murphy is an emergency physician and author of It’s OK to Die.