Schiavo Case Sparks Interest in Living Wills

JIM LEHRER:

The Schiavo case and a new interest in living wills. Much has been said that the absence of such a document from Terri Schiavo has been at the heart of the legal dispute, one that remains unresolved tonight, 15 years after she suffered brain damage. We look at the living wills issue now with a doctor and a lawyer. Dr. Linda Emanuel is a professor of geriatric medicine at Northwest University Medical School. Charles Sabatino is an official of the American Bar Association's Commission on Law and Aging. Mr. Sabatino, let's first, some basics: What exactly is a living will?

CHARLES SABATINO:

Well, a living will is one version of what we call most generally a healthcare advance directive. A healthcare advance directive is any instruction or wish that you put in writing, and it comes mainly in two flavors. One is the living will, which is an instruction about what you want or don't want when you're seriously ill. The other flavor is the durable power of attorney for health care which names somebody who has the legal authority to speak for you when you cannot.

JIM LEHRER:

The living will is literally a piece of paper?

CHARLES SABATINO:

It is in its legal format a piece of paper, but it should be part of a process that we call advanced planning that involves two things: The form and talking. And the talking part of it is usually the harder part for people.

JIM LEHRER:

Talking part meaning you tell somebody what you wish to be done to you in case certain things happen?

CHARLES SABATINO:

Yes, when you spell out your wishes in an advance directive, it is hard to be very specific, particularly well ahead of time because you don't have a crystal ball to know what you want. And expressing your wishes on paper, it is really important to talk to the person who you want to be your healthcare agent or proxy under your power of attorney, and to your doctor and to your loved ones who are all going to be close by, those who are going to be close by when a decision needs to be made. I've never seen a living will that didn't need some interpretation. It is not self effectuating. And decisions are complex. So filling in….

JIM LEHRER:

A form.

CHARLES SABATINO:

Filling in the form and then talking to your family members to make sure they understand what you are thinking and talking to your doctor about that is essential to making the form have effect when decisions need to be made.

JIM LEHRER:

Dr. Emanuel, from a doctor's point of view, what would you add to what Mr. Sabatino's definition of what in the world we're talking about here?

DR. LINDA EMANUEL:

Right. Well, I'd endorse everything that he said. In addition, I think that it is important to see this form as something more like a worksheet. So ideally what happens is that the discussion between the patient and the patient's family and the care team, the doctor, the nurse or whoever else in the care team is relevant. And that discussion centers around this worksheet. By the time the worksheet has taken the people through thinking about various scenarios and what their goals for care would be if they were in that scenario then you can turn that worksheet into a form. And that form can, if the person is ready, become part of the medical record. But it can also be updated. It should be a living document. It should be something that reflects an ongoing discussion. And it certainly is binding when it is properly filled out and it should be. But it should also be something that can be updated so that it doesn't feel overly irrevocable when a person has filled out such a form.

JIM LEHRER:

So when you say it becomes part of the medical record, let's say somebody has not been in an accident, somebody is perfectly healthy, no illness or whatever –

DR. LINDA EMANUEL:

Right.

JIM LEHRER:

— but you are suggesting everybody has a doctor or a medical person that they see. This document would just be part of that record. They could be 21 years old. They could be 121 years old, right?

DR. LINDA EMANUEL:

Very often it's the young and healthy who stand to benefit from such planning processes and such forms the most. It's the young and healthy who are robust enough to go on for a long time after a serious illness or accident as we've seen in the current situation with Terri Schiavo. So living wills are for everyone. They are analogous in many ways to a safety belt. They don't solve everything but they certainly minimize the damage if something dreadful does happen to someone, at least in potential.

JIM LEHRER:

Do doctors view these as binding on them?

DR. LINDA EMANUEL:

I think doctors are still in the process of making optimum use of them. And if the doctor has been part of the discussion process, that's when the doctor feels most comfortable. The real goal of the advanced care planning process is to bring people together as a team to have a chance… it's sort of like preventive medicine, to have a chance to iron out any differences, to see things the same way if possible, and if there are any differences to figure out how to work with those to make sure that the right person has been appointed as a proxy and mainly to bring everybody to a state of what we might think of as existential maturity, getting ready for a stage in life that comes to all of us at some point, namely having a serious illness that takes us away.

JIM LEHRER:

Sure. Mr. Sabatino, as a practical matter, up to this point what has been the attitude of courts around the country toward a living will? How much status do they have in the average courtroom around the country?

CHARLES SABATINO:

They will have very strong status. Most of the case law in this area involved cases where there was no living will. And I think that is indicative of the fact —

JIM LEHRER:

The Schiavo case we will get to in a minute.

CHARLES SABATINO:

Exactly. If there is, they will be very powerful pieces of evidence. In fact, most of the time it avoids the need of ever having to go to court. But you can be sure that….

JIM LEHRER:

Why is that? Because everybody is in agreement?

CHARLES SABATINO:

Because your wishes, if they're spelled out and your healthcare proxy whom you have named has the legal authority to make the decision. So they stand in the same shoes as you would. And it usually avoids the need to go to court.

JIM LEHRER:

What is the legal history on when there has been disagreement of some kind between – among members of the family or doctors or whatever, and a living will had to go before a court? What is the history? Is there one?

CHARLES SABATINO:

Well, I can probably count the cases on one hand that have had that scenario.

JIM LEHRER:

Is that right?

CHARLES SABATINO:

Yes. Generally, where everyone is acting in good faith, the courts will bend over backwards to give providers the benefit of the doubt. But what the issue will —

JIM LEHRER:

Medical providers?

CHARLES SABATINO:

Medical providers.

JIM LEHRER:

I see.

CHARLES SABATINO:

— to respect their good faith efforts in providing care. But it also points out the fact that a living will is going to need some interpretation so there is still room for people to have a difference of opinion about what it means. Someone who is 18, doing a living will, it's impossible to predict years down the road what you are going to be facing. Someone who is in their '80s or 90s and is already experiencing the chronic conditions that will eventually lead to their death is looking the devil in the eyes and they may have very specific wishes about what they want and don't want. It is a progressive kind of thing. And it's hard to make generalizations for everybody.

JIM LEHRER:

Yeah. Dr. Emanuel, of course, it's the Schiavo case that has brought us here to talk about this tonight and the whole nation interested in this issue. If Terri Schiavo had had a living will, would there still have been this problem that has become such a big deal?

DR. LINDA EMANUEL:

I think it would have been considerably easier. It is always impossible to say what would have happened if things had been different. But it's hard to imagine that it would have reached this level if there had been a living will in place. One of the other things that a living will does is it makes it so much easier for the team to at least come together somewhat, so in the first place, the proxy who has a very difficult role. No one should underestimate how difficult it is to be a proxy implementing decisions….

JIM LEHRER:

Now a proxy — excuse me. Before we… let's define proxy. A proxy could be anybody that any individual chooses to handle the end for them, right, to make the decisions at the end? That could be a lawyer.

DR. LINDA EMANUEL:

Yes.

JIM LEHRER:

That could be a brother. That could be the next door neighbor. It could be anybody, right?

DR. LINDA EMANUEL:

You can name anyone who is in the age of majority to be a healthcare proxy or durable power of attorney. And it is sometimes better to name someone other than your most beloved because it is a burdensome task. Sometimes it's better to name the closest person to you and sometimes it's not. That's part of the idea behind having this as a discussive process so that the person who is chosen as a proxy has a sense as to how that role will go, what their role is, and that they can handle it. So with —

JIM LEHRER:

Go ahead. I'm sorry.

DR. LINDA EMANUEL:

With that in mind, the whole process goes more easily so that ideally what would have happened in Terri Schiavo's case is the authority would have been clearly given by the document and by the document to the husband. The two would have been in concert, the entire team could have come around to that, and even if other members of the family didn't like what they saw, it would be clear in black and white and they would have been able to reconcile to it as clearly as, Terri Schiavo's wishes.

JIM LEHRER:

Do you agree with that, Mr. Sabatino? That a living will in the Schiavo case specifically would have made it easier?

CHARLES SABATINO:

If someone in the condition of Terri Schiavo, had she named her husband as a proxy under the healthcare power of attorney, it would be very difficult for someone to challenge their decision making short of that proxy acting in bad faith or ignoring their responsibility under the law. Under these documents as a proxy you have a responsibility to try to act as the person would have acted or if you can't… if that is unknown, in their best interest. So it would be very hard to challenge that decision unless it was clearly abusive of their responsibility.

JIM LEHRER:

But one of the issues in the Schiavo case, as I'm sure you know, Mr. Sabatino, is the issue of what Terri Schiavo's wishes would have been. And because there was no living will, it was left under the, at least Florida courts, have ruled up to now and it hasn't been overruled yet by the federal courts, that that decision was made by the husband. And he says he thinks this is what Terri Schiavo herself would have wanted. If there had been a document that said exactly what she wanted, would that have changed anything? We still would have had seven years in the court?

CHARLES SABATINO:

Certainly having the document that said I wouldn't want nutrition or hydration would make a big difference in situations like hers. Coupling that with naming a proxy who has authority is the strongest twosome you can do to make sure your wishes are fulfilled. But many people are not quite sure what they would want, and just naming someone whom you trust to be your decision maker is a big first step and would solve most of the cases in itself.

JIM LEHRER:

And most– the law — most cases have been resolved the judges have stuck with the proxy's decision? In other words, if I choose you as my proxy, you make a decision. And somebody in my family doesn't like it; the courts will go with you?

CHARLES SABATINO:

They'll look at your document to find out how much, what you said and what authority you've given your proxy. And as long as the proxy is acting in accordance with what you've directed, it's virtually impossible to stop that.

JIM LEHRER:

Dr. Emanuel, before we go, is this whole spotlight that has been put on this issue by the Schiavo case welcomed by folks in the medical community because it's out on top, out in the open and being discussed? Or this something, oh, my God, this is a terrible, terrible thing going on right now?

DR. LINDA EMANUEL:

Well, I think every professional would wish that people weren't suffering so extremely badly. But there is a silver lining. If people will start to make out medical directors more often, that would be a silver lining because that is helpful. And I think the other take home message from all of this is that a well designed and well written document will help the person, the patient, him or herself, to understand his or her wishes for various different scenarios as they work through it, so that hopefully they will be able to make a clear statement and one that provides a sort of accurate portrait of how they think and what their values are and what their own personal threshold is for intervention versus not intervention.

JIM LEHRER:

All right.

DR. LINDA EMANUEL:

With that, the clinicians can make some clear and very easy decisions.

JIM LEHRER:

All right. I thank you both very much.

CHARLES SABATINO:

Thank you.

DR. LINDA EMANUEL:

Thank you.