New Hampshire’s advance directive form got an update Monday. Governor Hassan signed a bill that seeks to streamline and simplify the document.
Advance directives—sometimes called living wills—let people decide who can make medical decisions for them and what invasive treatments should be avoided at the end of life. Many in the healthcare system say they are vital plans that ensure a patient’s voice is heard, but only 25% of Granite Staters have signed advance directives.
Later this week we’ll look at efforts to increase that number, and the impact of not having a completed advance directive. We begin today with an introduction to the form and its latest re-write.
Even doctors are surprised at how fast Ken Braiterman’s ALS, more commonly called Lou Gehrig’s disease, is progressing.
“I can’t walk. I can’t stand. I have no use of my right hand up to my elbow, and I’m losing my left,” says Braiterman. “That scares the heck out of me.”
Up until this year, Braiterman had lived in his own apartment. Now, at 64, he’s a resident of Harris Hill Nursing home in Concord. Confined to a wheelchair, a nurse helps with bathing and feeding.
“It is hard and humiliating.”
With health fading fast, Braiterman is thinking about the end of his life.
“My wish is what it has always been,” he says. “I want to be stuffed in a Hefty bag, and left out for the garbage men. But they say you are not allowed to do that, so I’ll have to make some other plans.”
Braiterman enjoys a little gallows humor, but he’s taking his final days seriously. His ALS may progress to the point where he can’t swallow or breathe on his own.
“No feeding tubes, no breathing devices. I don’t want anything. I want to die peacefully and be left alone. I’ve always felt that way.”
Braiterman’s younger brother David, a Concord lawyer, will carry out those wishes if he becomes unable to make his own medical decisions.
Putting A Plan In Writing
David is what’s known as his brother’s durable power of attorney for health care, sometimes called the agent.
“It is hard to listen to, but is also comforting to have a very clear sense of what Ken wants, says David. “I think the worse thing, sitting in my shoes, is to be not sure what the person wants. Because then you are left guessing.”
The brothers have gone over the variety of medical events Ken may face, and what he wants in each case.
The plans are captured in his advance directive…a legal document sometimes called a living will.
Every state has a system for advance directives. New Hampshire has one set form, a few pages long, available online and elsewhere. There’s no fee and it doesn’t even have to be notarized as long as there are two witnesses.
There is a slight hitch, though. In the first section of the form, you designate the person who you want to make decisions for you, known as your agent. You can also decide what you want to do about medically administered nutrition and hydration, usually feeding tubes to keep you alive.
Then, in part two, you can request that heroic efforts not be used--that only comfort care be provided. And then it asks again about medically administered nutrition and hydration.
“Often times when you were doing this with somebody,” says Shawn LaFrance, Executive Director of the Foundation for Healthy Communities, “they would say, ‘Well didn’t we just talk about all that?’ And we would generally say, ‘Yes, but now you have to separately answer this and fill this out.’”
LaFrance says by asking the question twice, it meant New Hampshire’s form didn’t line up with the forms in other states. So there were cases--not often, but some--where people who had directed that they not be kept alive by feeding tubes when death was otherwise imminent were given just that treatment because their forms were from out of state.
With the legislature’s redraft of the advance directive statute, that problem has been fixed.
And the new version still does make space for people to write in their wishes about nutrition and hydration.
“And so, this was an attempt to make things simpler,” says Senator Peggy Gilmour. “Make the form clearer, crisper. And yet, not change any of the intent or any of the choice, or the wishes.”
A Controversial Topic
The use of nutrition and hydration to keep people alive where no chance of recovery is possible has at times been a politically divisive issue. That was certainly the case for Terry Shiavo.
“The essence of civilization is that the strong have a duty to protect the week,” former President George W. Bush told reporters at a 2005 press conference. “Cases where there are serious doubts and questions, the presumption should be in the favor of life.”
There was a protracted legal case between Shiavo’s husband and her parents. The husband, who had legal authority to make decisions, wanted to remove life support for Shiavo after a massive heart attack left her with severe brain damage. The parents, devout Catholics, unsuccessfully fought the removal of a feeding tube.
The case garnered a wave of media coverage.
New Hampshire’s re-write of the advance directive statute was far less controversial. Some Republicans voted against the bill in the House, but it faced little opposition in the Senate, and the Catholic Diocese in Manchester was okay with the changes.
Problems In Practice
Even with the altered form, Don Rabun still sees problems. He’s the state’s Long Term Care Ombudsman--basically the complaint department for New Hampshire nursing homes.
He says what’s directed in the form doesn’t always get carried out.
“Younger folks take it upon themselves to say, ‘You know, I know Dad wants this, but I think this would be better for them.’ Well, that’s not their job.”
To ensure these documents work, it’s important for both parties to actually sit and talk about what is wanted, before an emergency arises. But those conversations can be tough to have, and as a result, only about a quarter of all adults in New Hampshire have completed advance directives
In Part 2 of our series, we’ll take a look at some efforts around the state to up those numbers, and make discussions of death a little easier.