It’s a discussion that most people avoid: end-of-life planning.
Doctors say it’s important to have these conversations while you’re still able. But let’s face it, talking about advanced directives can be uncomfortable, even terrifying.
More often, it's a medical crisis that forces families to talk about their loved ones’ wishes. Dr. Joanne Roberts of Providence Hospital in Everett has seen this many times. She said the typical situation would be someone had a stroke, the caregivers who live nearby are at the hospital and the kids who live out of town fly in.
“Everybody’s at the bedside and they’re arguing over what did mom hope for,” Roberts said. “How did mom want to live the rest of her life? Well, she never talked to us about that.”
Roberts, the chief medical officer at Providence, previously practiced hospice and palliative care medicine. The back of her business card has three questions printed: "Tell me what you hope for | Tell me what you’re afraid of | Tell me how you want to live the rest of your life."
Imagine, Roberts said, what kind of conversation that would be.
Roberts said it’s her dream that doctors and patients have conversations around these questions. The goal is to encourage people to make a plan for end-of-life care and to share those plans with their families and doctors.
To that end, the Washington State Hospital Association and Washington State Medical Association have started a campaign called Honoring Choices. Its website offers resources, and a kit for opening the dialogue.
Roberts knows from personal experience that it’s tough to have these conversations. Her own mother made her wishes very clear early on.
“I can give you her exact words: ‘I don’t want to live on no damn machine,’” Roberts said.
But Roberts, who was in her early 20s at the time, didn’t want to hear it. “She used to drive me crazy talking about this stuff,” she said. “I hated it.”
Yet, the message stuck with her. Years later, her mother was in the hospital. She had heart failure.
“She was 80, and she was clearly dying,” Roberts said. “One day, in comes a surgeon to her room and said, ‘Gosh, we can put in one of those devices to make your heart beat stronger.’”
Her mother mentioned this to Roberts and briefly considered the procedure. Roberts reminded her mother what she had said in years past.
“I was able to say, ‘Well mom, does that fit with what you had told me over all these years?” Roberts said. “And she reflected and said, ‘No it doesn’t at all. Of course not.’ And it helped her make a decision. And she died a couple of days later.”
Roberts has started a conversation with her own children. Her older daughter, who is in her early 20s, isn’t eager about it. Roberts chuckles; her daughter is reacting the same way Roberts did with her mother.
On the ninth floor at Harborview Medical Center in downtown Seattle, Dr. Randall Curtis works in the trauma care unit. He said advances in medicine have helped keep people alive longer. Often that results in a good quality of life, but sometimes not.
“That’s where we’ve had this realization that just because we can, doesn’t mean we always should,” Curtis said. “And that’s where we need to find out what’s important to the patient and to their family and make sure the care we’re providing is in line with that.”
What makes life worth living for one person can be different for another. Some patients would say quality of life means living independently and not relying on other people. Others might say that not getting outdoors and walking in the woods is a life not worth living.
Curtis recalls trying to find out what mattered to his parents, but it was hard to get that discussion going. “My family likes to talk about good things, positive things,” he said.
His brother-in-law eventually nudged things along. Curtis said he was surprised to learn some things about his independent parents – that they wouldn’t mind living in a nursing home, so long as they could communicate, recognize people and enjoy life.
Curtis said the discussion gave him a better idea of their wishes if he ever needs to make those kinds of decisions. It removes a tremendous burden, he said, “Because I had the conversation, and I know how they feel.”
Curtis said these conversations don’t have to be a one-time event. And it’s OK to revisit the questions.
Physicians are also having these conversations among themselves. In Everett, Dr. Roberts said there’s a time to ask whether efforts are extending life or extending death, especially for patients who are truly at the end of their lives.
“We can do things with our technology that can add days,” she said. But at some point, “All the technology in the world won’t keep us from dying.”