End-Of-Life Care During a Pandemic: How Do You Get It Right?

Providing the terminally ill with the right end-of-life care is challenging under the best circumstances. It requires difficult conversations and a careful aligning of prognosis and treatment options with patient wishes and concerns.

Shunichi Nakagawa has established himself as a leader in this field. In February, he and his colleagues published a “Three-Stage Protocol” that is clear, concise and, most important, prioritizes the values and wishes of patients as they confront difficult and distressing decisions about their care. The protocol lays out three straightforward steps for health care workers: sharing the prognosis, clarifying the patient’s care goals and deciding on a treatment plan.  

“What I wanted to emphasize in this protocol is that we have to clarify the patient’s goals before discussing treatment options,” said Nakagawa, assistant professor of medicine at the Columbia University Irving Medical Center. “I always try to stick to this protocol because if I don’t, the conversations get muddled and the patients and their families get confused.”

As the COVID-19 pandemic began ravaging communities across the United States, the need for efficient and compassionate guidelines like these has only grown. Nakagawa has transitioned to working with emergency room patients suffering from COVID-19 who are unlikely to recover. He spoke with Columbia News about his efforts to help them and their families confront difficult questions with little time.

Q. You developed this protocol before the COVID-19 outbreak. Why has it proved to be of such value during this pandemic?

A. Because COVID-19 is rapidly progressing, it is particularly important to provide goal-concordant care based on our patients’ values. This three-stage protocol is very simple and easy to remember.

Q. You have been working in the ER with COVID patients and families since late March. What unique challenges does COVID present for end-of-life care?

A. First, COVID progresses very rapidly. We have patients that were doing well until several days before they came in, but when they arrive in the ER, they are hypoxic, even with extra oxygen, and we have to make a decision about intubation in a very short period of time. Some patients have very poor prognoses, due to old age, frailty and other chronic conditions.

Second, many patients do not have the capacity to make decisions, and we have to talk to family members. But because of no-visitor policies, we need to have these very serious conversations over the phone. Family members cannot be at patients’ bedsides and cannot see how quickly their loved ones are deteriorating. They don’t realize how bad the situation is.

Q. Have you had to modify your protocol to meet those challenges?

A. I think it’s the opposite. Because this protocol is my roadmap, the more challenging the situation is, like COVID, the more closely I need to stick to it.

I try to make sure I go through each step carefully. For the first stage, we emphasize sharing knowledge and conveying the prognosis. When it is apparent that the prognosis is very poor, I try to make it very clear and simple, like, “in your dad’s case, if his COVID infection gets worse, it would almost certainly take his life,” or “his time is likely to be short no matter what we do.”

For the second stage, we try to clarify goals of care. We ask open-ended questions, like, “what is most important to him, knowing that his time is short?” and “what are you most concerned about?” During a crisis like COVID, family members are often very overwhelmed, so I try to ask questions like “what does he enjoy usually?” “what makes him happy?” which is more concrete and easier to answer. It also helps family members change their focus from “live or die” to “live, but in what way?”

For the third stage, we make recommendations based on the goals we established. Physicians tend to ask yes/no questions for medical interventions (“do you want to intubate him?” “do you want us to do chest compression?”). We need to tell them whether and why intubation or chest compressions can help achieve their goals. We should say, “in your dad’s case, let’s try intubation and see how he does, but we should not do chest compressions because they won’t help him,” or “we should aggressively focus on comfort, and we should not use a breathing machine. We shouldn’t do the chest compressions."

Q. How are you involving patients and their families in these critical discussions, when family members cannot generally be physically present?

A. We try to use videoconferencing as much as possible. It really helps. The power of visual images is huge, because some family members only remember what the patient looked like when he was in better condition a week earlier. Family members are also able to communicate with their loved ones and say goodbye. Even if they cannot be present and hold the hand at bedside, family members are generally very grateful for this opportunity.

Q. Are there any lessons you have learned? What has the feedback been from patients, families and health care workers?

A. I have always believed that effective communication is incredibly important in medical care, and that belief has not changed during this pandemic. When we don’t think a patient can survive, we have to say that clearly. When we don’t know or we are concerned, we have to tell them that.

I shared this protocol with ER physicians and have been getting a lot of positive feedback from them. Many family members have also expressed their gratitude for transparent communication, even when their loved one is at the end of life.