A New Look at Living Wills (WSJ, 6/8/12)

[Guest guest]

There's a good article in today's Wall Street

Journal on living wills. Here are key excerpts:

" An estimated 25% to 30% of Americans have filled

out living wills, documents that spell out wishes

for medical treatment. But ethicists say the

typically simplistic documents aren't the

solution many hoped they would be.

Life-prolonging medical technology has far

outstripped doctors' ability to predict outcomes.

The hardest choices center on when quality of

life will be so diminished that death is

preferable. As such, some health organizations

are trying to improve living wills, allowing for

more flexibility and nuance. Some ethicists,

meanwhile, are de-emphasizing living wills

altogether and focusing on appointing a trusted

family member or friend as your health-care

agent. ... The problem with living wills is that

most people can't articulate what they want...

And even if they can, family members often don't

properly interpret those wishes. "

I think this reinforces the idea that we need to

choose carefully a family member or friend who

will be our health-care agent, and we need to

have a lengthy discussion with that person in

advance about what " quality of life " means to us.

The article mentions two sources of living will documents:

* Five Wishes: fivewishes.org; $5; can be completed online

* Lifecare Directives: lifecaredirectives.com/products.html#ead; cost is $8

Another resource mentioned in the article is the

American Bar Association's " Consumer's Tool Kit

for Health Care Advance Planning, " described as a

tool for getting the conversation started. The

tool kit is available at no charge online:

http://www.americanbar.org/groups/law_aging/resources/consumer_s_toolkit_for_hea\

lth_care_advance_planning.html

Robin

http://online.wsj.com/article/SB10001424052702303990604577369920659306562.html

Wall Street Journal

June 8, 2012, 9:26 a.m. ET

STAYING FIT

A New Look at Living Wills

These critical documents about your preferences

for end-of-life care don't always work as

planned. More flexibility might be the answer.

By Johannes

My father was in a coma, hooked up to a

ventilator, and I had to make a tough call.

His living will expressed his desires for a few

black-and-white situations: He didn't want to be

kept alive if he was terminally ill, or in an

irreversible vegetative state. But the situation

I faced wasn't so simple. The neurologist said he

would wake up from the coma, but there was a good

chance he would have severe brain damage. How

much of a chance? The doctors couldn't say.

Doctors and nurses say my heart-wrenching

experience is typical of the complexity of

real-life bedside decisions. An estimated 25% to

30% of Americans have filled out living wills,

documents that spell out wishes for medical

treatment. But ethicists say the typically

simplistic documents aren't the solution many

hoped they would be. Life-prolonging medical

technology has far outstripped doctors' ability

to predict outcomes. The hardest choices center

on when quality of life will be so diminished that death is preferable.

As such, some health organizations are trying to

improve living wills, allowing for more

flexibility and nuance. Some ethicists,

meanwhile, are de-emphasizing living wills

altogether and focusing on appointing a trusted

family member or friend as your health-care agent.

" Most of us have come to the conclusion that the

way to get over the vagueness is to get someone

to speak for you, " says M. Veatch, a

professor of medical ethics at town

University's Kennedy Institute of Ethics in Washington, D.C.

Living wills were created in the 1960s and gained

national attention in the 1970s when a young

woman, Ann Quinlan, following alcohol and

drug use at a party, was left in a vegetative

state, raising alarms about medical technology

keeping people alive in hopeless circumstances.

" We had a naive view that if you had a document,

that would solve the problem, " says

Callahan, co-founder and president emeritus of

the Hastings Center, a Garrison, N.Y., nonprofit

that was an early champion of living wills. " In

practice, " he says, " all sorts of problems arise "

that aren't spelled out in the documents.

When Shalline, an active 86-year-old who

regularly bested his grandchildren at ping pong,

was unable to communicate after a severe stroke

in March, treatment decisions fell to his

daughter, Robin. Ms. Shalline, a 57-year-old

teacher from Monkton, Vt., says her father had a

living will but had never talked to her about his

wishes. " There is so much gray area, " she says.

" You'd hope the living will would spell it all out, but it doesn't. "

His living will called for withdrawing life

support if there was no reasonable expectation of

regaining a " meaningful quality of life " but

didn't describe what that meant, she says. Ms.

Shalline, when told by doctors that her father

could be blind in one eye, unable to feed himself

and might never walk again, made the decision to

withdraw the ventilator based on " what I knew

about his life. " Mr. Shalline, who loved Wiffle

ball and had recently helped build a staircase,

was " proud of his 'physicalness,' " she says. He died March 18.

It is hard enough, under the best of

circumstances, to know what your family member

would want in a particular situation. But add to

that the fact that even top doctors can't predict outcomes very well.

Lee H. Schwamm, vice chairman of the neurology

department at Massachusetts General Hospital in

Boston, where Mr. Shalline was treated, says that

even when he thinks he can predict a patient's

outcome after a stroke, he is wrong 15% to 20% of

the time on major outcome measures, such as

whether a patient will be able to walk again.

" I've never seen a living will—and I've seen a

lot—that speaks to this question of diagnostic uncertainty, " says Dr. Schwamm.

Living Documents

You can get a living will from a lawyer or

download it from the Internet. Many focus on

permanent comas and clearly hopeless conditions.

Florida's statute-suggested living will, for

example, directs life-prolonging treatments to be

stopped if there is " no reasonable medical

probability " of recovery from a terminal

condition or persistent vegetative state.

Florida, like most states, allows you to write

your own living will; a few states, such as New

Hampshire, specify that living wills must use a

state-approved form. (A bill now being considered

in New Hampshire would make the state form optional.)

A number of efforts have been made to improve on

the standard-style living will. A document

available online from Lifecare Directives LLC,

Las Vegas, for example, spells out several levels

of cognitive decline from coma to mental

" confusion " that require 24-hour supervision, and

asks if you would want life support if your brain

failed that much. The document also gives you an

option to say whether you want doctors to be

" positively certain, " " certain to a high degree "

or " reasonably certain " that you will never recover before pulling the plug.

A simpler but also innovative approach is the

popular Five Wishes living will. Five Wishes is

written at a sixth- to seventh-grade level, says

Malley, president of Aging with Dignity, a

nonprofit that distributes the document. Despite

its simplicity, the Five Wishes living will

addresses issues many others don't—for example,

asking if you want pain medication to relieve

suffering even if it makes you sleepy. It also

has a blank space where people can specify a

state in which they wouldn't want to be kept alive.

" Some people have a phrase that pops out in their

mind: 'If I'm in the same condition as Aunt

,' " Mr. Malley says. Originally written in

1987, the Five Wishes will has been available

online in an interactive format since last year.

Open to Interpretation

The problem with living wills is that most people

can't articulate what they want, says ethicist

Fagerlin, co-director of the University of

Michigan-affiliated Center for Bioethics and

Social Sciences in Medicine in Ann Arbor. And

even if they can, family members often don't properly interpret those wishes.

In a 400-patient study published in 2001, Dr.

Fagerlin and colleagues found that family members

who were presented with nine hypothetical

scenarios correctly predicted patient wishes

about 70% of the time, whether or not the patient had filled out a living will.

Can you forgo such documents completely? Mr.

Callahan, who championed living wills in their

early days, says he doesn't have one, preferring

instead to give decision-making power to his

wife, to whom he has said simply, " When in doubt, don't treat. "

A health-care agent—a trusted family member, for

instance—could supplant the need for a living

will. Under the legal doctrine of " substituted

judgment, " health-care agents must try to make

the decision you would if you could, says Alan

Meisel, the director of the Center for Bioethics

and Health Law at the University of Pittsburgh.

Anything—a phone conversation, a list of

instructions or a formal living will—can be used

as evidence of your wishes, he adds.

As for my father, we postponed the decision, and

he woke up, sharp as a tack, able to make his own decisions.

Miss Johannes is a writer in Boston. She can be reached at next@....

Future Wishes

If you're considering drafting a living will and

addressing possible end-of-life issues:

* Don't rely primarily on a living will to

communicate your wishes. Appoint a health-care agent.

* Recognize that living wills available online

typically are vague. One alternative that allows

you to customize the document: Five Wishes

living will, at agingwithdignity.org.

* Discuss your living will with your doctor, who

can address general questions as well as specific issues tied to your health.

* Talk to your family and your health-care agent

about your wishes. Conversation-starting tools

are available in the " Consumer's Tool Kit for

Health Care Advance Planning " at americanbar.org.