Terri Schiavo: Living wills can't cover all possibilities

LANSING - The living will, held out as the blessed escape hatch for avoiding the kind of battle being fought over Terri Schiavo, is the last place you should be looking for refuge, University of Michigan researchers say.

Unless you're close to death and know what medical choices you'll be facing, anticipating some hypothetical future is almost impossible, said Angela Fagerlin, research scientist with the University of Michigan Medical School and Veterans Affairs Ann Arbor Healthcare System.

"People have a really difficult time predicting their preferences," Fagerlin said. "And 30 percent of preferences change in as little as a year. Even when we know better, we tend to mispredict how we would act in a certain situation."

Fagerlin wrote "Enough - The Failure of the Living Will" with U-M law school and medical school professor Carl E. Schneider, published last year in the bioethics journal The Hastings Center Report.

What they found after reviewing hundreds of studies of living wills, end-of-life decisions and the psychology of making choices is that living wills offer a false promise of control over end-of-life treatment.

"There's no empirical evidence that they work," Fagerlin said. "...(they) might make people feel more confident that their wishes will be honored, they may make surrogates (decision-makers) more confident, but there's little correlation between having a living will and getting what you want."

A better choice is a durable power of attorney, she said, which names who will make decisions when the patient becomes incapacitated. While Michigan residents can outline their wishes in living wills to guide their doctors and families, a durable power of attorney is the legally binding document for end-of-life care.

Yet even with the durable power of attorney, the patient is depending on the surrogate to do the right thing under often unforeseeable circumstances.

"What matters most is that loved ones feel good about their decision," Fagerlin said. "Some (dying) people are happy for families to override living wills if they think they're acting in their best interest."

That's a good thing, since studies show that surrogates are no better able to predict what someone would want if they have a living will to refer to than if they don't, she said.

In Michigan the Supreme Court has set the bar a little higher for specifying what you want, said Dr. Howard Brody of the Center for Ethics and Humanities in the Life Sciences at Michigan State University.

Brody said that in the so-called Martin ruling, the court ruled against honoring the patient's apparent wishes because he hadn't indicated that he would refuse treatment in his specific medical condition.

"To the extent that you have wishes in particular situations, be sure you try as best you can to get medical language in here," Brody said. "Because of that ruling, you need to be specific."

The most common cause of battles over treatment is that the family has never discussed the issue, even when the patient has a living will or durable power of attorney, Brody said.

"Usually with extra time and conversation, everything works out all right, but it takes time," he said. In the meantime, a patient's wishes may be delayed.

In a case where a patient's ventilator is turned off on Friday instead of the previous Monday due to family disagreements, "that means there were four days when the patient's wishes were not honored," Brody said.

Fagerlin fears that the Schiavo case could ultimately curtail the role of surrogates in terminating care.

"We really need to emphasize that there is a right to refuse treatment," Fagerlin said. "It would be a terrible outcome of this case if we don't let surrogate decision-makers make decisions to remove treatment."

Contact Sharon Emery at (517) 487-8888, ext. 236, or semery@boothnewspapers.com.

When people write their advance directives for health care--they need to consider the impact of what looks like a simple decision. I advise that the directives include a team of people to help make the decision. This may include, the spouse, the family minister and the attending physician. In this way, the person ultimately responsible for the final decision can make that decision with support. That way they won't feel guilt for having made the decision.

In our state it helps if you have three documents:

Living Will,

Health Care Surrogate, or Durable Healthcare Power of Attorney,

and then the regular Durable Power of Attorney (which allows you to conduct business, but not make health care decisions).

Everyone in our family has all three. When my MIL and FIL were dieing we referred to their Living Wills, but the decisions were left to my husband because he was their Health Care Surrogate.

The Living Will did nothing for us legally, it just let us know what their end of life wishes were.

The Durable Health Care Surrogate was the legal means to see that their wishes were carried out.

What you need is an advance directive - they are very specific. This, I think is the best one - it is from the National Right to Life and so is written to be biased towards life.

http://www.nrlc.org/euthanasia/willtolive/index.html

Of course, Terri's great error was she chose as a husband a person with deficient moral values. The most important thing we can do is designate a person who has our own values.

And may I add that you want to make damn sure you consider well who those powers of attorney be granted to and that they will in fact have your best interests at heart.

I'm sure many a young, naive person thinks that her husband is "cuuuute" but little suspects that the beady-eyed, gold-chain-wearing, slicked-back-hair lounge lizard would sell her out in a heartbeat for a buck.

Also make sure the documents are in the custody of that person who has your best interest at heart, so that ol' beady-eyes can't destroy the documents and, with the help of scum lawyers and a corrupt judge, suddenly "remember" that you wanted him to have everything.

Well, we've been married 25 years, and I don't still think he's a "cutie", LOL.

Seriously though, you're exactly right. You don't want someone who is going to be pressured or cave when it comes to your end of life wishes. Or someone who is going to look out for their interests instead of yours.

My father and mother have chosen my husband to be their Health Care Surrogate. Sounds weird when they have four children, but they saw the way my husband fought the medical community to insist that his parents wishes were carried out, and after that they decided to name him their Health Care Surrogate.

This is excellent information. I'd never thought about having a health care surrogate. I'm going to find out if that applies in my state.

God bless Terri Schiavo--she doesn't know it yet, but she's made millions of us think harder about life care decisions. I think many people's lives will be saved as a result of what we're learning during Terri's tragic suffering.

Well that's going to be a lot harder if you have a notorized legal document that says you want them to use any means possible and necessary to save your life and if you given medical power of attorney to someone other than your spouse.

[The living will, held out as the blessed escape hatch for avoiding the kind of battle being fought over Terri Schiavo, is the last place you should be looking for refuge, University of Michigan researchers say. Unless you're close to death and know what medical choices you'll be facing, anticipating some hypothetical future is almost impossible, said Angela Fagerlin, research scientist with the University of Michigan Medical School and Veterans Affairs Ann Arbor Healthcare System.]

Angel Fagerlin is full of crap. Most people who have personal health directives (living wills) are covered for most any situation that's likely to come up.

I worked as a CNA in a nursing home and when many of the residents have cognitive impairments that leave them mentally incompetent to make decisions for themselves the treatment decisions that health care providers make are mandated by the personal health directives.

There's nothing to be gained by not having a living will and there's nothing harmful to having one, and when you consider all the options that are covered by one you can't lose.

This is my letter to the Flordia State Senators:

Sir/ Ma'am;

I went to the site recommended by the state of Florida for Living Wills. But I noticed that the Living Will sited there states only that no extra efforts be made to preserve or prolong life. What if a person wants life prolonging efforts?

I have heard many people say that this issue about Terri Schiavo could have been avoided if she had filled out a Living Will. But if she didn't want medical care discontinued, why would she have filled out a Living Will form?

There seems to be a catch 22. Terri didn't fill out a Living Will because she didn't want her medical treatment discontinued. Yet, because she didn't fill out a Living Will, the state assumes she doesn't want life support.

Is there a recommended form for residents of Florida to fill out to state that they DO want medical treatment continued?

Not true.
Living wills can make decisions even harder. Here is a case that I dealt with last year. An elderly lady who I take care of was admitted to the hospital with acute cholecystitis. She was given antibiotics pain meds by the ER physician and sent the floor. I saw her several hours latter and she started to become septic (massive infection) the surgeon was consulted STAT and it was agreed she needed urgent surgery. Here is the problem: She had a living will that stated she DIDN'T want to be on a respirator. By this time she was very confused because of the meds and the infection and couldn't give consent or the resend the living will.

The dilema is: She can easily be saved if I disregard her living will and insert a temporary tube for respiration during the surgery that will quickly be removed afterward. Or do I respect her living will and let her die of a very treatable disease?

I disregarded the living will and sent her to surgery. She did well and thanked me for doing what I did.

[I disregarded the living will and sent her to surgery. She did well and thanked me for doing what I did.]

Of course you did the right thing in this case even though it technically violated the law, and I hope that you never have to pay a legal price for your compassion because of lawsuit.

I know that this is an exception rather than the rule in a nursing home environment and I'm curious if this is different in a hospital setting where there are many more "medical emergencies" and fewer "end of life" situations.

Now that I think about it, as EMTs responding to calls, we were taught to finesse "consent" from people who had previously stated they didn't want to be treated but it was unclear if they were really giving "informed consent". This is used to administer simple, temporary, lifesaving techniques to save someones life, in a person who is not obviously terminally ill and who may, in fact, thank us later.

Well, our living wills don't say we can't be placed on a respirator in emergency situations, such as surgery.

They do say that if the patient's illness is terminal, we refuse a ventilator as a permanent life sustaining apparatus.

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