Despite his years of diabetes and many other health problems, when it came time for Alejandro to have his aortic valve replaced, he sailed through the surgery. His wife, four sons, and other family members were elated. Alejandro left the hospital on time and, at least for a while, did well at home. But three weeks after surgery, he suddenly felt weak and dizzy. He lost his appetite and his energy. His family brought him back to the hospital, where it was obvious he was very sick.
Most patients with artificial heart valves need to take "blood thinners" -- medicines that impair the blood's ability to clot. A clot forming on an artificial heart valve is a major problem. Tests quickly revealed that Alejandro had bled into his retroperitoneal space -- just in front of the spinal column but actually behind most of the abdominal organs. He was bleeding from one of his kidneys. His blood count and blood pressure were dangerously low. So he was admitted to the ICU, and from there on his problems cascaded. The bleeding kidney stopped bleeding after a procedure called embolization -- basically, the doctors threaded a thin tube through his arteries and plugged the leak. But then he developed sepsis, and then kidney failure. He started receiving dialysis, which was going to be permanent. During his stay, he had a cardiac arrest -- he "coded," as we say (because cardiac arrests in most hospitals are referred to as Code Blue or Code 99 or something similar). The ICU staff brought him back to life, but from then on his mental functioning wasn't normal. He more or less quit talking, he had trouble following commands, and his eyes wouldn't focus on the person addressing him or anything else. And his breathing pattern changed. Although the oxygen in his blood was normal, he appeared to be sipping the air. A CT scan showed no structural brain damage, but an EEG showed abnormal brain waves. He was thought to have anoxic encephalopathy -- a mouthful of a phrase that basically means generalized brain damage from lack of oxygen, a complication of his cardiac arrest.
One Monday morning our team found him on our list of to-be-seen consults. Under "reason for consultation," the weekend covering ICU doctor had written, "Family support." We met with the patient's wife Evita and one son. Using a Spanish interpreter, we talked about Alejandro's condition and the possibility that he would not survive, or at least not return to his previous level of functioning. His wife understood that. What she couldn't get her arms around was the surprise -- he had done so well at home, and his sudden deterioration caught the whole family off guard. She was torn between two conflicting emotions. She didn't want to lose her husband, but she knew that he would never want to be, as she put it, a vegetable. It was important to wait until Wednesday, she told us, when all four of her sons could be present. We assured her that all efforts would be made to help Alejandro make it to Wednesday, but that success was not guaranteed. At our suggestion, the family called their priest to administer the Sacrament of the Sick.
That night his breathing worsened, and he was placed on BiPAP. This is a tight-fitting mask that delivers oxygen under pressure to the lungs. It's one step below a ventilator in intensity. When we visited with Evita on Tuesday, she understood that things were worse. She still spoke of the discrepancy between how well he'd done immediately after the surgery and how he was doing now. We began to introduce words like "dying" and "hospice" into the conversation and scheduled the family meeting for the following day.
About 20 minutes before Wednesday's meeting began, Alejandro had another cardiac arrest. The ICU team responded swiftly and skillfully. As is always the case with patients who are coded and survive, he had a tube placed in his windpipe and was put on a ventilator. Present in the meeting room were Alejandro's wife, all four sons, their wives, and a couple of old family friends. I reviewed the case from the beginning. I answered multiple questions about treatment options, prognosis, and the like. "The best case is that he will not return to his previous self," I told the family. I discussed the option of continuing life support and aggressive therapy, or choosing to withdraw the machines and focus on his comfort for whatever time remained. The issue of surprise -- why had this happened when he'd done so well at first? -- came up again and again. I asked Evita what she wanted to do. "Whatever they want," she replied, gesturing toward her sons. One by one, three of the sons said they wanted only for their father to be comfortable. I turned to the fourth son, and before I could hear what he had to said, the ICU nurses rushed into the room and said, "He's coding again." I looked at the family and they all, through their tears, were nodding their heads. They knew. I said, "Let's go say good-bye." We went to the bedside. The ICU room was packed with people; Evita stood at the head of the bed, looking into her dying husband's eyes, telling him she loved him. Alejandro took his last breath a moment later.
I've been in plenty of family meetings where the issue of "code status" was discussed, but this was my first in which the patient had a cardiac arrest while the meeting was underway. Critics often say that palliative care is just about dying, which it sometimes is. But most of the time it's about helping the living accept the reality of dying at a pace they can accept -- even in the middle of a code.