Dying. It's Tough To Discuss, But Doesn't Have To Be
There is a particular conversation that almost no family can avoid and that doctors agree is incredibly important. Yet, most of us don’t have this conversation. It’s about the medical care we would want if we were dying.
To get the obvious out of the way: this can be an immensely difficult conversation. But it doesn't have to be.
“In my experience, they tend to go pretty well; I actually enjoy having those conversations with patients,” Daniel Miles says. He’s assistant director of the chaplain department at Carolinas Medical Center's main campus.
Of course, he's prepared if the talk does turn emotional. There's a box of tissues on his desk.
“We try to keep those handy for folks who come in and have some vulnerable conversations,” he says.
The conversation we're talking about is end of life care: if we're ever so bad off that we can't make decisions for ourselves, what do we want our doctors and family to do?
In Mooresville, Haley Bond recently had that conversation. Her boss, attorney Natalie Miller, walked her through it.
“If you are terminally ill, permanent coma, severe dementia, persistent vegetative state, do you want to be kept alive on machines if there's no chance you're coming off of them?” Miller asked.
“No,” Bond responded.
Bond is 24 years old, married with two kids. She's setting up a health care power of attorney – giving her husband the power to make decisions if she's too sick to make them herself.
She's perfectly healthy, so this is hypothetical. Still, she says it was really difficult to talk to her husband about.
“You don't ever want to think that…all that,” Bond said, starting to tear up. “It's hard to think about, but definitely important.”
The attorney, Natalie Miller, has this conversation all the time – it's her job. And yet, it's hard for her family, too.
“My husband actually hasn't done one of these I don't think because it's hard for him to talk about,” she said.
She's made clear that it's important to her.
“It comes up. I've learned as a spouse that nagging is probably not good for my marriage,” Miller said with a laugh. “But yes, we do discuss it. About once a year, I bring it up.”
Miller's husband is in good company.
Doctors and researchers say most people have not had these conversations. And the Pew Research Center found only about a third of adults have put their wishes in writing, like a health care power of attorney or living will.
“Everybody agrees it's important, but it's something else to actually follow through on it,” says Lindsay Conway, managing director at The Advisory Board, a health care consulting company.
“I think that it's still quite rare, to be honest with you,” she continued, “for physicians to be proactively having these conversations with their patents about the importance of advance directives.”
“Advance directive” is the umbrella term for the documents laying out what kind of care you want. Federal law requires hospitals to ask new patients if they have them.
Melissa Phipps is assistant general counsel for Novant Health.
“Unfortunately, what has happened is that it has become very much a check-the-box kind of thing,” she says. “So the person who's checking you in - getting your name, your address, your insurance card - they don't have a relationship with you.”
That makes it difficult to start a conversation about death, especially in a stressful hospital environment.
Phipps is helping the Novant system reframe this conversation.
“Who do you trust to speak for you if you ever lose the ability to make your own medical decisions?” she asks. “We're going to start asking every single patient that question.”
She says the goal is to make these conversations standard by the end of the year.
Carolinas HealthCare System calls in chaplains for the talk.
Daniel Miles tuned his guitar before his fellow chaplains sing a devotional during a recent morning huddle at Carolinas Medical Center.
When the meeting ended, Rachel Pence and the others were off to see patients.
“I have two patients that are requesting advance directives,” Pence said. “Potentially they would like to do them, and potentially today is not the day that they would be interested in doing it - you find out when you enter the room.”
The chaplains say about 40 percent of their patients actually go through with it.
Some don't realize what they had asked for, some don't think it's necessary, and family dynamics can play a huge role, says Lance Stell. He’s a clinical ethicist for Carolinas HealthCare System.
“We like to think that all families are loving, affectionate and supportive, but sometimes they are not,” he says. “They don't get along with each other. They didn't like the patient very much. Maybe they haven't been associated with the patient for a very long time.”
Stell says choosing a health care power of attorney who you are close to can help.
If you don't choose one, state law lays out who decides. In North Carolina, it goes guardian, spouse, majority of adult children, majority of adult siblings, and so on. (Click here for the exact order.) If there's no one else, two doctors make the call.
Dr. James Tulsky is chief of Duke Palliative Care, and he says it rarely comes to that.
“The overwhelming majority of the time, when someone is seriously ill, we are able to get to an agreement with the family about the decisions to go forward,” Dr. Tulsky says. “It's painful. It's sad.”
But he says that process is so much easier when families have discussed what they want before they get to the hospital.
Chaplain Daniel Miles couldn't agree more. He remembers an elderly woman who was dying, incapacitated, with one daughter appointed health care power of attorney, ready to let her go – and three other kids who wanted to keep fighting.
“Part of the work that I tried to do was to support the daughter who wanted to make this decision,” he says. “To say both, if this is what your mother wants, this is the right decision to make. And you've got to live with your three siblings. So it's not an easy call.”
The decision tormented the family for about a week.
“The daughter did eventually make the call to withdraw the life-sustaining support, and the woman died, so her wishes were honored.”
But Miles says if the whole family had just had the conversation together, when their mother could still be part of it, it could've prevented the agony of that week.
It also could've saved a lot of money. Now, people get squeamish about this next point, but with rising health care costs, it's important: researchers have found that having these conversations can reduce health care spending.
Holly Prigerson is director of the Center for Research on End of Life Care at Cornell.
“What we found was that patients who said that they had talked with their doctors about the care that they wanted to receive if they were dying had significantly lower health care costs in the last week of life than those who did not,” she says.
That was in a study of cancer patients. Prigerson says it found 36 percent lower costs for people who simply talked to their doctors about what they wanted.
To be clear, the reason to have end-of-life conversations is not to save money. But that may be a positive side effect.
Dr. Gordon Guyatt was involved in another study that found significant savings, this one in nursing homes.
“If people are getting care that they don't want, most people I think would say that's a bad thing,” he says. “If the interventions that people are getting that they don't want actually lead to health care expenditures, that's even worse.”
The point of these conversations is to make that choice yourself.