“What does $1,100 get you for a funeral?” I asked the man on the other end of the phone. I was calling for a Dominican woman who did not speak English and who was relying on the $1,100 allowance from MassHealth to cover the costs of her husband’s burial.
Usually, when a family asks me about funeral arrangements, I tell them that they can have the funeral home they’ve chosen contact Massachusetts General Hospital and that they arrange for everything. In this case, the wife and daughter of the critically ill patient I’d cared for in the Cardiac ICU at MGH, were not sure where to start with arrangements. The patient, Mr. B, had come to us with decompensated heart failure and likely septic shock, and after being extubated, was maintained on round-the-clock dialysis. He was in heart failure, renal failure, and most recently, liver failure. Over the course of two days, I’d walked the family through the process of making difficult decisions about his medical care in light of his deteriorating status.
On the first of those days, after discussions with the team about moving the patient toward less intervention, I met with the family to review where Mr. B was in terms of his multiorgan failure. According to his family and the medical records, he was a guy who had avoided medical care (on purpose) for years, and the family was feeling guilty that they’d even brought him to the hospital to begin with. His admission had extended from what they thought might be a couple of days on a regular medical ward to a couple of weeks in the ICU, intubated, then extubated, on medications to maintain blood pressure, and on continuous dialysis. His skin was jaundiced and he could barely speak, but he was able to tell his family he did not want to continue on like this. He told both his wife and daughter very clearly that he did not want to be intubated again.
So that’s how we began—with the decision not to intubate him were he to develop respiratory distress. The entire family was in agreement about that. I asked about chest compressions and shocking him, were that to be necessary. They said they would still want that. I explained to them what such a resuscitation would entail, being very specific about a process I’ve learned most families and patients have a romanticized view of—probably from the versions they see on TV. I explained to them that given his heart failure (and, in truth, what he needed was a heart transplant, though given his multiorgan failure, he was not a candidate), those attempts at resuscitation would likely be futile and would, in fact, not be benign in terms of harm to Mr. B. They acknowledged this, but wanted to keep him only DNI (“Do Not Intubate”). I told them we would honor their decision. As we parted ways, I told them it would be reasonable to also consider not doing any more, and making him comfortable, as he was dying.
The following day, he continued to deteriorate, with worsening liver failure and, per the renal consultants, no hope of ever getting off continuous dialysis. He was also bleeding from his GI tract. The nurse told me the family wanted to talk to me. I walked into a room of tear-streaked faces. Mr. B’s daughter, his official healthcare proxy, asked me to update him on what the situation was. I confirmed what they already knew. Then they asked what his death would be like, and the usual questions I have heard on many occasions: how long will it take? Will he be in pain? I offered them pastoral and social services, which they accepted. They stayed late that evening, keeping vigil.
When I arrived the next morning, he had just died. I called the family and, as I broke the news, I heard wailing in the background as his daughter started crying and his wife guessed what had happened.
When they arrived, I escorted them to his room. He looked much the way he had the day before, as if he were asleep. All the machines in the room had been turned off. He looked in peace. I let them and his nurse know I was ready to talk with them at any time when they felt up to it.
And then they asked me about the funeral. The social worker had given them a list and had been trying to call without success. I called and was able to talk directly with the funeral director. With the MassHealth benefit, he told me, they could get a “direct burial,” which means straight from the MGH morgue to the cemetery, with no service or viewing. The burial site would be a numbered grave in the “part of Hyde Park Cemetery where poor people are buried,” he told me.
Erica Seiguer Shenoy, MD–PhD ’07, is a resident in internal medicine at Massachusetts General Hospital.
