What Is Really Scaring Americans About Advance Directives?

Is anyone else having trouble understanding why so many people seem so angry or at least nervous about "advance directives" provisions in the Energy and Commerce Committee's health reform proposal?

I read all 11 pages in section 1233 of "America's Affordable Health Choices Act," as well as all four pages of the amendment by Rep. Mike Ross of Arkansas.

Nowhere did I see anything about "killing Grandma," "euthanasia seeking death squads" or any mention of governments forcing beneficiaries to specify how they want to die. Nothing even comes close.

What is Sarah Palin talking about?

In fact, there it is in black and white: just the opposite. A qualified health benefit plan shall present "the option to establish advance directives and physician's orders for life sustaining treatment according to the laws of the State in which the individual resides."

It "shall not promote suicide, assisted suicide or the active hastening of death." Nor shall it "presume the withdrawal of treatment and shall include end-of-life planning information that includes options to maintain all or most medical interventions."

The language says in several different places that the advance directive process is entirely voluntary.

What I read was a reasonable effort to carve a way to encourage discussions about the end of life, so patients and their loved ones can have a cogent, calm conversation. In this way, they can express their wishes, fears and expectations, and do so long before the incapacities and indignities of the death process take that opportunity away.

The proposal would pay physicians a designated fee to launch these conversations, something that they don't get now. When they give such counsel or facilitate such discussions between family members and loved ones, they now do it for free, and therefore taking the necessary time may not be something that's high on their list of priorities. This would make it easier.

So I don't understand why so many Americans are so angry. Or why 50,000 to 60,000 AARP seniors angrily cancelled their memberships in AARP in the mistaken belief that the association favors a health reform bill that includes such death squads.

AARP spokesman Jordan McNerney acknowledged the extent of the outcry and what he called a disappointing number of resignations, and blamed it on "scare tactics on the part of opponents of health reform and people with a financial stake in keeping the system broken." The AARP is doing its best to dispel the myths with an ad campaign circulating in local media across the country, he says. And he thinks people will start seeing the truth.

But until they do, it seems to me that seniors especially would want to have a system in which their doctors are incentivized to help them have a frank conversation with their families and loved ones about their end of life care.

I certainly want my wishes known about how aggressively I would want to be treated if I could no longer walk, talk, think clearly or feed myself. Would I want to be kept alive if the choices were between being kept in a drug-induced delirium or having out-of-control pain? Absolutely not.

So I called Laurel Herbst, MD, an internist who has supervised the dying wishes and death processes for thousands of patients for the last 31 years. What does she think is going on? Why are so many people so upset about advance directives?

"It's superstition," she quickly replies. "Some people believe that if you talk about death, that will make it happen faster."

Herbst, vice president of the Institute for Palliative Medicine at San Diego Hospice, says that for the most part, families and spouses "don't like to talk about values. About what's most important to them. They don't communicate very well at all."

That's why this legislation is so important. It would establish a provision in law that sets up a process to nudge these conversations between caregivers, families and patients, conversations that aren't, for the most part, happening today.

Herbst surprised me by saying that today, because of a basic lack of communication, even advance directives that do exist don't work that well because they're often old, forgotten, lost, ignored or disputed.

"We don't believe that signing an advance directive works very well today, even for people who have them. Because people don't know about them, or the families don't agree with what the patient wanted," she says.

Sometimes, they're even ignored by the caregivers who want to keep treating the patients, because they don't want to be perceived as failing to save the patient.

What is important, she says, is for patients to have those conversations with loved ones and caregivers so everyone is on the same page about how aggressively providers should be to safeguard quality in those oh so very precious last moments of life. "They need to express what's important to them," whether it's to not be connected to machines, or to die at home.