by Kristen McConnell
We all want to die quickly and easily, and old. But now that everyone has a cell phone in his pocket and transport to a hospital is rapid, the sudden heart attack, massive stroke, hard fall, or even pneumonia that would have swiftly ended a life a couple of generations ago is less likely to kill you and more likely to get you admitted to a hospital and intubated. At that point, decisions must be made.
Intensive care is the place where we hold back death after an acute illness or injury, largely by breathing for patients with machines and by stabilizing their vital signs with a host of powerful drugs. Some patients do well and recover, others can’t, and sometimes a patient’s family realizes that his health won’t meaningfully improve, or that he would not want to live in his condition, and decides to withdraw care.
The first time I saw this was haunting. I was a brand new nurse, and I knew the patient because I’d cared for her previously. She’d had a devastating stroke, and almost no visitors in over a month. Her body had deteriorated in many ways, and we were juggling treatments, fighting a losing battle. The family made the decision to withdraw care from afar. Her eyes were always open, and it was possible that she was conscious but unable to respond with any type of movement. There was no way to tell.
She’d been taken off the ventilator and given morphine to ease her discomfort from air hunger. At the end of my shift I walked by her room and saw it darkened, the monitor off, the whites of her eyes the only pops of light. I was shocked to see her left alone in her last hours. I snuck in and squeezed her hand, talked to her a little, told her she would be okay soon.
The second time I saw care withdrawn was almost joyful. The patient was elderly and his wife was confident that he didn’t want to live on life support. Now off of the vent and breathing insufficiently but independently, his nurse said he seemed so much better. He looked comfortable, his arms free from the restraints he’d been struggling against, and his blood pressure, which had been high enough to require pushes of IV labetelol, was now normal. “He was fighting it so much,” she said. His wife stood at the foot of the bed while I helped my friend bathe him. “Give his bottom another wipe,” she said. “This is probably the last time.”
Last week my own patient had care withdrawn. He was in his nineties and had broken his spine in a fall, going overnight from independent to intubated and on vasopressors, to keep him breathing and to maintain viable blood pressure. His aging children were scared to enter his room. They peered through the glass door, asking me, “What’s his prognosis? What’s going on? He wouldn’t even know if we went in there now, right?”
I explained what they were seeing and told them that now he was stable, but without the treatment and the ventilator, he wouldn’t be. And I told them that for the last few hours he’d been responding to me by sticking out his tongue when I asked, so I thought he would know that they were there. Did they want me to go in with them? No. They went to the waiting room.
Talking with the surgeon, our ICU fellow, and me, the family easily understood that a major operation, at his age and with his underlying health conditions, wasn’t a good option. Without surgery, we could continue to care for him and hope that he would become stable enough to leave. Given his injury, leaving the ICU would mean moving to a nursing home and having a feeding tube, perhaps being dependent on a ventilator, and certainly being unable to walk. The likelihood of complications in the ICU was high—he was susceptible to infections, he already had heart disease, and his blood pressure, dangerously low due to his injury and now maintained medically with an aggressive, titratable IV drip, might not stabilize. There was a real possibility that he would never become healthy enough to leave.
Otherwise, we could cease intensive management and let the natural effects of his injury take their course, focusing on his comfort.
They asked about thinking it over for a day or so. This is always an option, but I hoped they wouldn’t take it. I was the one tightening the man’s restraints to keep his hands away from the tube and talking close to his ear, telling him we would keep him as safe and comfortable as we could. But after asking us to step out and talking briefly, they’d decided. Under these circumstances, their father would prefer to have medical care withdrawn.
The doctor explained that we didn’t know if the patient would breathe on his without the ventilator, but that we would give him morphine and make sure he was comfortable. I had a Catholic priest come to perform last rites, and stood with the family as they prayed and wept.
The doctor said now that he knew what their father wanted, it was his job to carry it out, trying to absolve them of the sense of responsibility. I don’t think that was what upset them though—and I told them it was okay to be sad that he was dying. “It’s better not to be sick for a long time,” I said. “I don’t disagree,” said the patient’s son. “I just can’t believe it.” His daughter noted the musical tone of our ventilator alarms, and said that he would have told them about it, that he loved music and dancing.
They wanted to leave before we took their father off the ventilator and stopped the medications. I reminded them that he had been responsive, and since he’d had his last rites, probably knew what was going on. But they chose not to say goodbye, telling him they were getting lunch and would see him later.
I wanted to get it right. I wanted to catch up on my other patient so I wouldn’t have to leave this one alone while he was dying. The doctor put in orders to withdraw care and discontinue the medications, but I wanted to wait until the tube was actually out before stopping those, because I didn’t want him to die while he still had a plastic tube taped to his face and snaking down his throat, pushing air into his lungs.
When everybody was ready, the respiratory therapist, doctor and I gathered in the room. I was hushing people when they said something too bluntly or matter-of-factly, reminding them that the patient, though sedated and not alert, had been able to follow commands. I held his hand and said, “Don’t worry, it’s okay, we’re going to take this tube out because we want you to be comfortable.” That was the best thing I can think of to say—it was true.
With the tube out he didn’t struggle at all, and with the meds off, his blood pressure was dropping. He didn’t need the morphine. He was comfortable. He took a few breaths. While the doctor and I stood by him, his daughter called. I told her that we’d just taken out the tube and he was passing very quickly, that it wasn’t going to take hours or days. He was going now, as we spoke.
In an ICU, the monitor displaying vital signs in a patient’s room is connected to a central system. Alarms for asystole—no heart beat—or other problematic values flash across every monitor on the unit to alert us. When this happens, nurses will stop by the room to see what’s up. Under normal ICU circumstances, the bright lights are on, many people are moving quickly in the room, and we gather, watching to learn, to step in if another person is needed to push a drug, do CPR, or keep track of the interventions, and to be available as a runner for supplies. When care is withdrawn, the monitor in the patient’s room will be off, or silenced, but alarming values are still displayed throughout the unit. But in the room, there’s no drama—just one patient, sometimes the family, one nurse, a doctor.
An intensive care unit is not the ideal place to try to let a life end peacefully, but there’s not always the opportunity to arrange something else. When a decision is made to withdraw care, stop interventions, and let someone die, we do our best. This is what it looks like.
Kristen McConnell, R.N., works in a specialized intensive care unit in a large academic hospital. Read more of her work here.
For more about the Great Challenge of coming to grips with end-of-life care, click here.