Complicated End-of-Life Conversations Between Patients, Family Members, and Nurses

“It would be so much easier if he wasn’t able to make his own decisions.”

This showstopper statement was made by the wife of a dying man. That morning Dan told our team he didn’t want to go back on the ventilator no matter what anyone said. “One time is enough. My cancer is going to kill me but I don’t want it to kill me hooked up to those darn machines.”

The problem was his wife Millie and his doctors all believed that going on a ventilator again would give him a chance to fight the infection, and give him more time. Time Millie desperately wanted. Enough so that she tried to talk Dan into changing his mind. One of the many tragic aspects of the COVID pandemic is that our patients and families are forced to make difficult decisions via phone or FaceTime. These are challenging conversations made even more so by the circumstance of them being conducted remotely.

CASE

Dan had been admitted with pneumonia. His diagnosis of head and neck cancer had taken him through chemo and radiation, a short reprieve, and then a recurrence for which he had just begun treatment. He’d battled his way through the start of the new treatment regimen but had gotten weaker and was in decline when he developed shortness of breath. Millie rushed him to the emergency room. Short of breath and heading toward respiratory failure, he agreed to the ventilator. Fortunately, he improved, and 5 days after admission, he was extubated and transferred to the step down unit where he did well for a few days, until he didn’t.

On the morning we met him, Dan was on high flow nasal cannula (HFNC); yet even with that level of support, his O2 Sats were dropping. He lay in bed, ashen gray against the white sheets, drawn and cachectic. The HFNC whooshed like wind through bare branches. He was only able to say 4 or 5 words before needing to pause to catch his breath. Having to speak over the noise of the machine added to the strain.

We were asked to see him because the primary team was concerned about his declining respiratory status. He needed to be re-intubated but Dan was adamant in his refusal. It was a problematic time for us to be asked to step in to clarify Goals of Care. Dan was clear that he did not want to be re-intubated and clear in his understanding of what it would mean. But Millie thought he was being rash; the vent would give him more time. Surely he wanted more time. Didn’t he?

As weak as Dan was, as muted as his voice was, the shaking of his head was not. His conviction was strong. “I don’t want the ventilator.”

DISCUSSION

Most of us might consider time to be a gift, and that more time was worth fighting for. But more time was not what Dan wanted because it came at too high of a price. He was stuck in limbo, stuck between 2 terrible choices: go on the ventilator and live a little longer, and hopefully come off of it only to do more treatment, or refuse the ventilator and run out of air, something he was doing at a faster speed than anticipated. He wanted to be given the chance to slip away. He was done.

But Millie was not. She wanted to override his decision because she believed he would be glad for the extra time and that he would be able to come off the ventilator again, get stronger, and go home with her. The noise of the HFNC was almost enough to drown out his voice. He repeated his wishes in staccato gasps of words, “I. don’t. want. to. go. back. on. the. ventilator.”

The problem was not that we didn’t hear what he said, it was that Millie could not. The idea of letting him go was untenable for her. Her hope was reinforced by the pulmonologist who, perhaps in the face of her onslaught, couched his assessment by saying, “It’s possible he could recover enough from his pneumonia to get more treatment.” Dan was being double teamed by Millie and the doctors, and it felt like neither were listening to him. Instead, they acted as if all they needed to do was convince him to embrace their premise, as if re-stating their case again and again was all it would take. Forcing a decision by wearing him down. Dan was exhausted, physically and mentally, but he held to his position, “No ventilator.”