“Is That All You Got?”

We had been at his bedside all night now, and his condition was only getting worse. Dwayne was 9 years old. He had been suffering through treatment for leukemia for over 2 years at this point and now had overwhelming sepsis. He had no white cells to fight the infection and it seemed that his entire body was giving up, as one organ system after another began to fail. For the past 2 hours we had been able to maintain a stable heart rate and blood pressure only by pushing medications, fluid, or blood products every 10 minutes in addition to the escalating doses of continuous infusions. He was requiring more and more support from the ventilator and his oxygenation and acidosis were worsening, slowly and relentlessly. I took his parents into our conference room across the hall. They too had sat with him through the night, and they knew from our prior conversations and from talking with Dwayne's oncologist that the situation was grim. I explained what we were trying, answered a few questions, and then paused. After a minute, I said: “He is dying. We are not going to be able to save him.” They nodded, overwhelmed, and tears began to flow. Another minute and I continued: “With everything we are doing now, I think we can keep him alive a few more hours at most. We could also stop all this and let him go peacefully. Are you waiting on anyone else to arrive?” They explained that his grandparents were getting to the hospital as fast as they could. They were maybe an hour away.

Knowing it would not help Dwayne but hoping, as they did, that the family could be gathered together when he died, I suggested that we continue all our current interventions. Yet I also explained that I did not want to do useless things that would make his last moments chaotic, such as chest compressions or shocking him. Again they nodded. We understood each other.

I went back to the bedside to update the team. The ICU fellow had not left the spot where he had been rooted for hours, watching the monitor and frequently pushing medications. I told the fellow and the nurses that I would be writing an order for Dwayne to be DNR in the event of a pulseless cardiac arrest, but that we should continue the ventilator, drips, and intermittent doses of bicarbonate and epinephrine as we had been doing and explained that his grandparents were on the way.

“Is that all you got?” the fellow asked.

The question bothered me. It made me realize how differently some physicians framed the conversation I just had with the family. To him, a discussion about code status was all about convincing the family to discontinue heroic and probably useless efforts. The conversation had a goal, namely, “getting” the DNR. I had only partially achieved that goal in his view; further escalation was limited, but he and I would still be at the bedside, pushing medications and adjusting the ventilator, for the next hour or two at least.

The fellow was not being unusually insensitive; such language is frequently used in medicine. It is almost a rite of passage for a trainee to be told by a supervising senior resident or fellow to go “get a DNR” from a patient. In pediatrics this is less often the case. The death of a child is a rare enough event that the conversations are often led by a fairly experienced physician. Everyone involved is typically acutely aware of the overwhelming burden on the family who is about to lose a child. So perhaps the phrase was grating to me because I hear it less often. Yet I also think that such a phrase, the language we often use, is problematic in itself. The implication is that there is one right answer to the question of code status, and that the requisite physician skill is to be able to convince or manipulate the patient or family into agreeing to that “right” course of action.

Many have argued that conversations about code status generate less conflict and distrust, and end up being more useful, when the focus is on sharing information and aligning goals rather than pressing a patient or family to come to an immediate, definitive decision. ¹ Focusing solely on getting an answer about code status can lead to a conversation that is confusing and disturbing to the patient or family. Any disagreement, when the physician will be truly satisfied with only one answer, can lead to firmly entrenched positions on both sides that are difficult to renegotiate during future conversations.

Of course, there are valid criticisms of the agreement I came to with the family. Were we only prolonging Dwayne's suffering by continuing a few more hours? Perhaps the fellow and nurse, who had not left the child's bedside, were more focused on him whereas I was more focused on trying to help the family through this experience. Yet I did not think that Dwayne was conscious or in pain at this point and saw helping his family as one of the few remaining useful things I could do. Perhaps the fellow was also concerned about the other patients in the ICU with active issues, whom the resident was managing—mostly on her own, with his occasional input, while he stayed at Dwayne's bedside. The valuable medical resource of his undivided attention was being denied to these patients.

It would also have been better if the fellow or resident and bedside nurse could have joined me for the family meeting. Not only would they have had a better understanding of how the family saw the current situation, but the fellow would have seen how I led such a conversation. For the next such conversation, I might have been more likely to let him take the lead while I mostly watched for clarifications and later feedback. Being “taught” how to have such a discussion with a family can be just as important as being taught how to resuscitate the child at the bedside. Unfortunately, the patient was so unstable that one of us had to talk with the family and one had to stay with the patient.

When I argue that a physician should not enter a family discussion with a “get the DNR” mentality, I do not mean the physician should not offer suggestions about what he or she thinks is the right thing to do. Such guidance can be extremely important to a family. In this conversation, I was, in fact, fairly directive in my opinions and took an “informed nondissent” position regarding the resuscitation status.^2,3 I let Dwayne's family know that I did not think cardiopulmonary resuscitation would work, and that I was therefore not planning on doing it, but left an opening for objections to be raised if they were uncomfortable with this plan. I would have been less directive if the child were more stable and if I felt that there were real choices to be made regarding resuscitation. This family had few choices left—stop all interventions immediately and make him as comfortable as possible, continue until the rest of the family arrived, or continue to escalate with interventions that were almost certain to fail. At this point, we were performing a near-continuous resuscitation in any case, lacking only the chest compressions and defibrillation. Still, I felt that my purpose in the family meeting had not been to convince them they had to stop but to come to an agreement with them about mutually acceptable and achievable goals. I guided them to what I thought was a reasonable course of action after first trying to reach a common understanding. Instead of telling trainees to “go talk to this patient about her code status,” we should ask them to “talk to this patient about her goals of care if she becomes acutely worse.” After the conversation is over, the physician may still need to complete a checklist about what interventions will or will not be provided—but that does not mean the conversation with the patient should take the form of that checklist. There are many more wishes and things to discuss, other than code status.

It didn't take long until Dwayne's family was gathered at his bedside. His mother and father sat in chairs on opposite sides of his bed, each holding a hand, with two or three more family members including the grandparents standing behind each of them, hands rubbing or grasping shoulders and backs. The fellow and I stood at the foot of the bed. I leaned in to ask “Is everyone here?” and his mother nodded. Dwayne's blood pressure was drifting downward. The fellow picked up yet another round of sodium bicarbonate from the tray loaded with labeled syringes. I simply laid my hand over his and we put the syringe back on the tray. Dwayne's blood pressure continued to fall, his pulse oximeter waveform stopped picking up, and his heart rate steadily slowed. His nurse had already silenced the monitor at the bedside. His family encircled him and said their good-byes.