Monday, November 29, 2004

The Purported Failure of the Living Will

CNN -- Living wills not always a clean solution:
WASHINGTON (AP) -- Patients checking into hospitals and clients meeting with their lawyers often are advised to take a simple step toward planning for the future: fill out a living will.

But the reality is, too often, they don't really work.

The concept is straightforward: outline your wishes while you're healthy to guide doctors and family members who might have to make life-or-death decisions for you later on. Would you want to linger in a vegetative state if it were unlikely you'd ever wake up? Or would you rather be allowed to die?

But end-of-life medical questions often involve much more complicated medical and moral questions. Many living wills are so vague as to be useless.
A will might direct that no "extraordinary measures" be used if someone's condition is hopeless. But what is an extraordinary measure? And what is hopeless? If there's a 10 percent chance a treatment will extend someone's life by six months, is that good enough? Should an end-stage Alzheimer's patient, whose life is greatly diminished but still has moments of joy, be given antibiotics to treat an infection that otherwise might bring a quicker end?

There are other problems. People change their minds after they write their living wills but don't update them. Many living wills never make it to the bedside, left in a file cabinet or safety deposit box. And family and doctors often do a poor job of deciphering the patient's wishes even when they have the wills in hand.

"Most people believe that a living will can be written that is effective and that genuinely conveys real information that can be used in making decisions, and that is not true," said Carl Schneider, an expert in medical law at the University of Michigan Law School.

Since 1990, hospitals have been required in most states to offer all patients the chance to fill out a living will. But despite the law and despite several high-profile end-of-life legal disputes, most people still don't have living wills.

"Enough. The living will has failed, and it is time to say so," Schneider and colleague Angela Fagerlin wrote in a bioethics journal, the Hastings Center Report.

Relying on loved one is preferred, studies find

A better end-of-life option, experts say, is to give a trusted loved one the legal authority to make decisions if you become incapacitated. Two large studies found more than 70 percent of people would prefer that doctors rely on family rather than living wills in making decisions about their care.

This has its own problems -- the designated decision-maker may not understand what the patient's wishes are, and picking one person to make decisions could cause tension inside a family.

The stereotypical conflict, doctors and nurses say, comes when the adult child arrives from out of town feeling guilty he hasn't spent more time with his parent and resists steps to end the parent's life, even as a brother or sister who lives nearby says this is what the parent wanted.

Still, experts say designating someone to make decisions allows for more flexibility than living wills.

Another choice that holds less legal weight but perhaps more influence: thoughtful conversations in advance with your regular doctors.
The questions have become more acute as medical advances have given doctors unprecedented ways to prolong life. At the same time, a series of high-profile legal disputes over whether to end medical treatment have prompted more people to consider putting their wishes explicitly into writing.

This fall, the Florida Supreme Court struck down a law that reconnected the feeding tube of Terri Schiavo, 40, who was severely brain damaged 14 years ago. (Florida high court ruling)

The Schiavo dispute pits her husband, who says she wouldn't want to live this way, against her parents, who want to keep her alive. Schiavo did not have a living will. (Judge extends feeding order)

Another hurdle: Persuading doctors

But doctors don't always follow a patient's instructions even when they are clear. Sometimes the document doesn't accompany the patient. Or the doctor fears litigation or simply disagrees with a patient's wishes.

Jeanne and James Hanchett thought they were prepared. Both physicians, they had filled out living wills saying they did not want extraordinary treatments. Each had given the other legal power to make medical decisions.

While watching his beloved Pittsburgh Steelers play at Three Rivers Stadium, James Hanchett's head fell onto his wife shoulder. Mrs. Hanchett and bystanders tried to revive him. "There was no response at all," she said.

Paramedics arrived about 25 minutes after he suffered the heart attack and put a tube into his lungs to get them moving again. But Mrs. Hanchett, a semiretired pediatrician, knew it was too late.

At the emergency room, she told the doctor to stop resuscitation attempts. He refused, saying, "'If it were my mother or wife, I would want this to continue,"' Mrs. Hanchett recalled.

She said the doctor dismissed her when she told him that her husband had a living will and that she had power of attorney.

"So I turned on my heel and walked out. I didn't want to start screaming and yelling. I had to call our children," she said.

It was 29 hours before she succeeded in persuading doctors to remove the equipment.
So much to respond to. I'll try to hit them in the order presented and with bolded and underlined headers.

Vagueness: Part of the problem may be that lawyers prefer vague language. We do. Wiggle room is a grand thing if you can make it work. Hence phrases like "extraordinary measures" and "hopeless." Vague phrases that insinuate a nebulous meaning. One way to combat this element is to change the specific language. For example, instead of "extraordinary measures" maybe one should use "extraordinary measures such as CPR or..." Explain the meaning a bit more to more clearly establish the intent behind the phrase. This seems like a drafting problem to me, primarily residing on the lawyer's end though a common set of interpretative phrases would also make this easier. That is, establish common meanings for common phrases. This too would reduce or eliminate the doubt and uncertainty.

Updating Living Wills: This complaint is a poor one. A failure to update a living will rests squarely on the individual concerned. Just as with wills, should you change your mind you must update the document in order to clearly establish your intentions and have them effected. If you don't update the document, don't expect it to reflect your true intentions and don't expect that your intentions will be accurately followed. Gee, was that so difficult? I don't think so.

Access to Living Wills: This is a failure of the system. If doctors are looking for valid directions to follow and lawyers (and their clients) are attempting to draft valid directions for the doctor to follow, the intersection of these two seems obvious and predictable. It's borderline amazing that we as a society don't have an established connection between them. Perhaps its time to implement a national system to address this shortcoming. It wouldn't have to be anything real fancy or complicated. Set up an online database of living wills and powers of attorney. Make the database accessible only to specific hospital employees and doctors. Allow lawyers and their clients to access the database and upload the documents. Yes, I've skipped over a few of the problems. You would need some sort of authentication or verification step on the uploading end to prevent tampering with the documents. Perhaps this can be accomplished by requiring that copies of the original, paper documents be sent to the company. You would also need some sort of official recognition of the system, to enable hospitals to properly rely on the documents within the system. You would also need some sort of control, if possible, on the hospital's end to reduce unwanted and unnecessary access of the system. I.e. Something to try and prevent people from looking up their relatives' or friends' documents without due cause. And the system would need to be safe and secure against unwanted hacking, to enable it to be recognized and accorded respect. Still, it seems doable with the right investment and structure. Plus it could require a small fee for uploading documents. That way the system could become self-sufficient and possible. I have little idea of how to earnestly implement this idea but if someone else is interested, send me an e-mail. It could have potential and could potentially be very helpful and desirable.

Relying on a Loved One: To me, this seems like a one-sided aspect. If the individual would like a loved one, and a particular one at that, to make decisions concerning the individual's health care, the individual should specify that intention in a living will or, more appropriately, a power of attorney. This is not a catch-all nor truly a significant aspect of the living will but rather a choice for the individual when considering this topic. It's an option, not a solution.

Advance Conversations With Your Doctor: This, too, is an option and not a solution. Again, should the individual wish that his or her doctor make choices on his or her behalf or effect the individual's intentions, this should be made clear in the living will or power of attorney.

Persuading Doctors: This parallels the access issue discussed above. Doctors need to have some mechanism by which they can rely on documents produced. As it stands, it appears that no such mechanism exists, perhaps with the exception of waving the document in the doctor's face. Even then, the doctor may be loathe to follow its directives, especially if they are at odds with the doctor's personal beliefs or goals. This is a failure of the system, of the interaction between the legal documents and the medical community. Although it relates to living wills, this particular "problem" lies more in their effect than their existence and may be addressed and "fixed."

The Living Will Has Failed: In my opinion this conclusion is patently wrong. The living will has not failed, we have failed to ensure that these documents are accorded proper treatment. Much as society has implemented devices such as wills and trusts to address certain legal aspects in advance of their occurence, living wills do the same. If we as a society want these documents and want them to have a legally-binding and not insignificant effect, we must address their "failings" and ensure that they are accorded the respect they deserve. Why the author of the CNN piece, and others, have interpreted this to mean the documents should be or have become entirely inefficacious is beyond me. I see it as a failure of the system, and of the government, that can rather easily be addressed should we so chose.