3 fatal flaws of living wills

janelle

Terry Schiavo didn't have a living will to ensure her end-of-life wishes were followed. But it might not have helped. Here's how to make sure your living will does.

By Liz Pulliam Weston

As a lawyer, Beverly knows that living wills don’t work. But she still drafted the documents for her parents, allowing them to say what types of treatment they would and wouldn’t want if they became incapacitated.

"So much of what lawyers do doesn’t have a lot of legal force," said Beverly, a prosecutor who asked that her last name be withheld to protect her family’s privacy, "but it makes people feel better to have it done."

The notion that living wills aren’t ironclad is a shock to many laypeople, who hear the documents touted when end-of-life disputes make headlines. One of the latest cases, that of Terri Schiavo in Florida, has prompted a host of "don’t let this happen to you" articles and broadcasts that prescribe living wills as insurance against long, painful court battles.

(Schiavo, 41, has been severely brain damaged since heart failure in 1990. Her husband wants to remove the feeding tube that’s keeping her alive, and her parents are fighting him in court. Schiavo didn’t have a living will.)

The reality, according to legal experts and researchers, is that living wills don’t ensure a person’s wishes will be respected. Among the reasons:

They’re too vague
Most people imagine a fairly straightforward situation: They’re unconscious, hooked to a respirator and never expected to recover.



The reality is that most end-of-life decisions aren’t that black and white:
You might be conscious, at least intermittently.


You might have some functions, but not others. Schiavo, for example, can breathe but not eat or move much on her own; Robert Wendland, a brain-damaged California man at the center of another spouse-versus-parent battle, was able to catch a ball and perform other tasks.


You might suffer a condition that doesn’t have a clear prognosis. Even in Schiavo’s case, the parents’ doctors have argued that some recovery is possible (although other doctors consulted in the case disagree).


You also might suffer an entirely treatable ailment and have many months if not years of possible life ahead of you. Mary Dyer’s husband, for example, may have been able to survive repeated bouts with pneumonia. But the Bend, Ore., woman said 10 years of slow decline from Alzheimer’s and Parkinson’s disease had left her longtime spouse unable to recognize or communicate with anyone -- "little more than a vacant-eyed vegetable buried alive in a steel-fenced hospital bed."

"The toughest day of my life was the Monday when I walked into the nursing home with written orders to remove the tubes inserting high-tech antibiotics," Dyer said. "I sat by his bedside from Monday to Friday . . . watching and listening to him slowly drown in his own body fluids."

Others make different choices. One of my relatives was dying of cancer when she began bleeding internally. Although she had lodged a "do not resuscitate" order with her physician, she opted for treatment, guessing -- correctly as it turned out -- that she could live a few more months. Her quality of life may not have been stellar, but she lived to see her son graduate from college and managed to attend a celebration dinner a few weeks before her death.

Even living wills that detail many different scenarios can’t possibly include everything that might happen to you, said attorney Ed Long, executive director of HELP, a Torrance, Calif.-based nonprofit education service for older adults.

And most people are ill-equipped to imagine even the most common scenarios, let alone how they’ll feel in advance about any particular choice. That was one of the conclusions of University of Michigan researchers Angela Fagerlin and Carl Schneider, who reviewed hundreds of studies of living wills, end-of-life decision-making and psychological studies before concluding that living wills don’t -- and can’t -- work as advertised.

They don’t get used
Sometimes family members don’t know that a living will exists; at other times, they can’t find it. Even if it’s in their possession, your loved ones may disagree with your wishes or communicate what they would want in your situation.

The hospital experiences of people with and without the documents indicate that the existence of a living will doesn’t seem to change much. One study the Michigan researchers reviewed showed no difference in the number of operations, invasive procedures, diagnostic testing, length of hospital stays or cost of treatment between patients who had living wills and those who didn’t.

Often, the documents aren’t even consulted because both doctors and family are reluctant to acknowledge death may be imminent, researchers Fagerlin and Schneider said.

"So by the time doctors and family finally conclude the patient is dying," the researchers wrote in their paper, "Enough: The Failure of the Living Will," "the patient’s condition is already so dire that treatment looks pointless, quite apart from any living will."

They can’t shout down a contentious family member
As Beverly noted, it’s naïve to suppose a legal document such as a living will can prevent a court challenge by a determined family member or other interested party.

The dissenter can argue that you’ve changed your mind since writing the document, or that the situation you face differs from the ones the living will was designed to cover. While the dissenter might not prevail in the end, it won’t prevent lots of money being spent on lawyers.

And it may never get as far as a courtroom, anyway. Lawsuit-wary physicians might placate the dissenter, and if the person you named as decision-maker isn’t a strong advocate for you or the document, your wishes won’t prevail.

3 steps to take now
Does this mean living wills are useless? Absolutely not. If you already have one, it can give your loved ones some indication of what you might have wanted. But you shouldn’t assume the living will is all you need.

Everyone who wants some say in end-of-life decisions should do three things:
Draft a durable power of attorney for health care (known in some states as a health-care proxy). This legal document designates who will make decisions for you if you can’t make them for yourself. A lawyer can draft this for you, or you can use the forms included in many will-making kits and software packages.

Choose your decision-maker carefully. Although many people pick a spouse or a child, these may not be the best choices, Long said. "They might not be willing to let you go," he said. "You need an advocate . . . someone who can fight off family who disagree and deal with the medical system."

Also, consider naming one or two alternates if your first choice can’t serve.


Explore your feelings about end-of-life care. Long’s organization has a pamphlet called "Your Way" that helps people think about the kinds of care they would want in various situations.

He also suggests thinking about what makes your life worth living. "My father-in-law loved sunshine, loved to garden . . . and he loved to eat," said Long. When the man fell ill, the family knew that he wouldn’t have consented to a feeding tube and were able to prevent one from being inserted.


Talk about what you want -- and keep talking. Your family and your decision-maker need to know where you stand on these issues. But you may not be able to settle it all with one conversation, since your views on what is and isn’t appropriate care may change over time.

Someone who’s a born fighter may be weary of the battle and be willing to "let go" after a long or painful illness.

Conversely, young people in great health may be horrified at the thought of disability. As they grow older, however, they may discover that disabilities can be accommodated and that other things can make life worth living.
And what’s appropriate for one person may not be for others.

Beverly, for example, believes her family made the right decision in taking her 77-year-old grandfather off a respirator after pneumonia and heart failure rendered the once "hale and hearty" man helpless. He was conscious off and on, but doctors told the family he’d be on the machine for the rest of his life and the family decided the "in control" patriarch wouldn’t have wanted to live that way.

A single mother, Beverly decided she would prefer to remain alive if she were conscious and able to communicate with her young son. She’s told her family how she feels.

"Maybe it’s the lawyer in me, that if I can talk or communicate, it can’t be that bad," Beverly said. "If I’m conscious, I want to be around."

Liz Pulliam Weston's column appears every Monday and Thursday, exclusively on MSN Money. She also answers reader questions in the Your Money message board.

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We say, "Merry Christmas." If someone says, "Happy Holidays" say, "Happy Holy Days to you to."

schsa

Every family member has a copy of my living will. And my primary care physician has a copy. I have made my wishes known and the first person who objects will have me haunting them for the rest of their life.

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I'd rather laugh with the sinners than cry with the saints.

adorkablex

I've told both my Mother and my Father my wishes on the subject. If the doctors feel there is nothing they can do to make me normal (my definition of normal.. I don't just mean able to open my eyes etc) that I wouldn't want to live. If I can't appreciate the birds singing in the morning and the crickets chirping at night, if I can't listen to music and appreciate it like I once did, I would not want to live.

I believe my parents love me enough that despite their own grief they'd follow through with my wishes.

As for everything I own, they can pick and keep whatever they'd like.. the rest they should donate to a woman's shelter.

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janelle

I have friends who have a retarded girl. She is in her twenties like you now. She has a certain quality of life and I cannot say she is suffering. Maybe she is happier than most people. It's ok to decide for yourself but you may change your mind when and if you get there. Her parents have to decide for her and make her comfortable. They hope others will do the same when they are gone.

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We say, "Merry Christmas." If someone says, "Happy Holidays" say, "Happy Holy Days to you to."

schsa

Janelle, everyone has their idea of what is quality of life. There are certain things I am willing to accomodate for quality of life and some things I absolutely will not. If I were born blind, then not seeing would not take away from my quality of life. If I were born with a learning disability it would not necessarily take away from my quality of life. I could live if I lost my sight or my hearing. I could live if I lost part of my memory. But I do not want to live in a nursing home, being turned over every twelve hours to avoid bed sores, unable to communicate with family and friends and unable to take care of myself. I value my independence. For me, that is quality of life. To lose that would be devistating and for that reason I have a living will.

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I'd rather laugh with the sinners than cry with the saints.

YankeeMary

Once again Janelle, "retarded" is not the proper term. Its mentally handicapped or mentally challenged, anything besides "retarded". It hurts people when this term is used so as Christians and kind, loving members of society, we do what ever it takes to keep from hurting anyones feelings.

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The more you complain, the longer God makes you live.

Victorious

I'm sorry her choice of words may have offended you but do you really think talking down to her helps? The words ******* is not PC and it offends me but it's still in the bible. Being a Christian doesn't mean that your not human. I feel I'm a work in progress.

adorkablex

I don't really understand how she was talking down to her? Merely stating that it was offensive to her.

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Victorious

Using the words "once again Janelle, "retarded" is not the proper term" its like a tap on the hand to remind the person that they have been told not to do it. It's something I might say to my children when I want to remind them of bad behavor. Hope that helps.

adorkablex

To me saying "once again" is just simply stating that something has been said before. Not speaking down to her. And if you think of it as speaking down to someone.... why do you say it to your children?

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Victorious

Ok, First, I said it's something I might say to my children. <g>

Second, When I said "talking down" to her... I'm saying it like an adult speaking to a child. I don't think Janelle is a child.

I believe your a young adult and I have seen how some peoples post *bother* ( or however you feel) you because they are "talking down" to you because you are young. I try to treat everyone with the same respect as I would like to be treated / or talked to.