I read the New York Times every morning. The on-line version, which is awesome because it’s like one big front page, plus I don’t have to dig around looking for page D14 to continue reading. I find plenty of fodder for this and other blogs that I write for. The latest involves family medical decision-making, sort of. Written by Jessica Nutik Zitter, an ICU doc, Here’s how it starts:
“Our patient was never going to wake up. He had an unrecoverable brain injury. The prognosis had become clear over time. As the patient’s attending physician in the intensive care unit, I arranged a meeting with his sister, the only visitor we’d seen for days, and explained. She was resolute. “He’ll wake up,” she said. “He’s a fighter. Do everything you can to keep him alive.”
The next day I told the social worker what the patient’s sister had said. ‘What about the wife?’ the social worker asked.
That was the first I’d heard of a wife. A spouse is the official next of kin. No decision should ever be made without the spouse. But I hadn’t known she existed. I discovered that she visited the patient after her work shift, usually at 8 p.m. By that hour, our team was gone. The doctors on night duty were on for emergencies, not conversation. And so she was invisible to us.”
OK, let’s list the things wrong with this scenario, which is all too common.
1. The doctor arranged a meeting with the sister. This really should have been a team meeting in which the social worker and the nurses would have been involved. In fact, social workers and nurses should pretty much always be involved in end-of-life discussions.
2. The sister was the only visitor the doctor had seen. If she had asked the nurses she would have known about the nocturnal wife. Always asks the nurses. They’re sitting there with the patient for 8-12 hours, and they aren’t just there to take orders and change sheets.
3. At 8 PM the ICU team was gone. Really? There was no one from the team, maybe a resident or a medical student, who was on call overnight? I agree that covering physicians are there for emergencies, not conversations, but only because end-of-life discussions should be done by the senior doctor who knows the patient the best.
4. The patient was invisible to Dr. Zitter. Not to “us”.
So Dr. Zitter arranges a meeting with the wife, who works late and can’t come during “regular business hours”. Which is also common. I had a child in the NICU and I had to stalk the team at 5AM in order to get to talk to them. People work. And how do the doctor and the wife get to meet? The wife gets off early from work. Until we doctors are willing to accommodate the needs of the patient and the family, before ourselves or our schedule, end-of-life discussions will continue to happen infrequently. For that wife, her dying husband is, well, dying. She needs her job.
OK, so Dr. Zitter recognizes her mistake. What does she decide to do? Ask social work to be involved in decisions? Talk to the nurses? Make ICU rounds multidisciplinary? Communicate? Nope. She creates a checklist. A “patient-centered” checklist, as if there were any other kind. Checklists are useful, don’t get me wrong. They’re great if you’re trying to land on the moon or get your car serviced. They help us not forget important things. But please, oh please, let’s not reduce active and open communication to check boxes any more than we already have.
Here’s a better scenario: Our patient was never going to wake up from his brain injury. This became clear to all of us. When we gathered around the patient’s bed early in the morning we talked to one another. The resident reported on vitals and overnight events. The nurse talked about her concerns regarding medical futility. The social worker and the nurse expressed to the team that they were very concerned about the hostility between the wife and the sister, neither of whom had met the attending doctor but both of whom had had long conversations with the nurse. A decision is made to arrange a family meeting involving the sister, the wife, the attending, the resident, the nurse, and the social worker. The social worker expresses her concerns about the wife’s job. All involved agree to meet at a time convenient for the wife of the dying man. No one checks any boxes. There is no need.