being-mortal.mp3

Dr. Lakshmi Nayak specializes in cancer of the brain at the Dana-Farber Cancer Institute in Mission Hill. Her average patient lives for only a year and a half, which means that Nayak has to have end-of-life discussions with almost all of her patients.

"It’s almost always fatal," Nayak said. "I don’t get tell people I’m going to cure you … It's not easy. It's also not something that you get used to. I don't think this is something that one can ever get used to."

Like most physicians, Nayak was never really trained how to have these conversations, so over the years she’s come up with her own set of best practices.

"We sprinkle," said Sandra Ruland, a nurse who works with Nayak. "We sprinkle in information at every visit, or around every corner, about the implications of things that we see on the scan, or deficits or side-effects."

The goal is to give the patient a chance to make decisions about the time that’s left, and how to spend it in the most meaningful way.

"There’s so many things that you might want to take care of — you know finances, putting your affairs in order," Nayak said. "Maybe speaking with people that you haven’t for a while. Trips. There may be some graduation. I have had people who asked me and I told them, you know, yeah, you should probably try to get this wedding done sooner."

Allen Chou was one of Nayak’s patients. It’s been five months since Chou died at age 28. I’m speaking with Chou's girlfriend, Linda Sim, 27, in the bedroom she and Chou shared in her parents’ home. Chou’s baseball caps are hanging on the wall. Behind the door are the last clothes he wore and the last bath towels he used. There are photos of him everywhere.

Sim pulls out an old phone to show me a video of Chou singing to her.

"That was when he was healthy," Sim said. "Oh my God, so many memories together."

Chou went through multiple surgeries to remove a brain tumor. That was followed by radiation, chemotherapy and then rehabilitation.

"He just kept declining," Sim said. "Within days. No time for anybody to wrap our head around what's going on here and how fast this is moving."

So Nayak and her nurse, Ruland, had to do what they don’t normally do: deliver bad news without the chance to, as they say, “sprinkle it” over several visits.

"Dr. Nayak sat with us, held Allen's hand and said, 'Allen, I’m sorry, um, the treatment didn’t go well.'" Sim said. "'You’re very sick, um, you don’t have much time left, you probably have a few weeks.' This was the first time that Allen heard that he was going to go."

"It was a shock to him," Nayak said. "A month is a short time. It's not enough time to come to terms with this."

"When everybody left, I crawled into his hospital bed, lay right next to him, we were just cuddling," Sim said, chuckling. "He turned around in the hospital bed and said, 'I want to get married. I only have two weeks left!' I was like, 'No you don’t.'"

"And then, he took my hand, he said, 'Linda Sim, would you be my wife?' I was like 'Yesssss.'”

"The chaplain married us in our room," Sim said. "I’m in sweats, he’s in a hospital bed, getting married … right on the spot. In sickness and in health and death do us part."

"And he had the biggest smile on his face," Sim said. "He’s like, 'Now you’re my wife.' I was like, 'Yup, I’m your wife.'"

With the help of family and friends, Sim and Chou planned a wedding reception. Even Nayak and Ruland came.

"That reception that they had, it was unbelievable," Nayak said. "He was beaming."

Chou would be admitted to hospice the next morning.

"Somehow, he had the capacity to do that," Ruland said. "To simultaneously plan to go to the hospice house while having such a beautiful time with your new wife and your family."

"When you’re given a timeframe, you have to make the best of it," Sim said. "That’s what he said, 'Let nature take it’s course and we’re going to make the best of what we have left. And be happy with it.' He’s the one who made that decision. And that’s what he wants, that’s what he’s gonna get."

Watch Frontline’s “Being Mortal" Tuesday at 10 p.m. to learn more about the relationships between doctors and patients at the end of life.