Substituted Judgment and the Limits of Autonomy

Rosemary Flanigan
Program Associate
Center for Practical Bioethics

Our own John Lantos co-authored an article in the 2008 Journal of General Internal Medicine (23(9):1514-7) entitled Substituted Judgment: The Limitations of Autonomy in Surrogate Decision Making.

The authors make an interesting point: that there is "a compelling argument against substituted judgment. . .based on empirical evidence," and alternative models do a better job of respecting the patient as a person.

(I'm sure you know the arguments against: patients change their minds over time; predictions by surrogates are correct about 68% of the time; research shows that patients themselves do not want decisions made on their behalf to be based solely on their prior statements (!)

So what models to use?

1)Best-interest standards based on community norms (but that is unwieldy. Think of the time it would take to reach those "norms" and, once reached, how do we know they apply to "this" patient?)
2) The patient's life story: respect for persons approach. Here, decisions are not made by trying to predict the actual choices that an incapacitated loved one would have made; instead, decision-makers consider the individual's interests and values in the context of the current situation.

It is an interesting paper. Perhaps ethics committees could consider how surrogate decision making occurs in institutions.

Has anyone done so recently?

Why are there so many preemies?

John Lantos, MD
John B. Francis Chair in Bioethics

For the last twenty years, rates of preterm birth have risen steadily in the United States. Doctors and policy makers used to think that they understood why.

The problem, according to a 1985 report by the prestigious Institute of Medicine, was that high-risk women did not have access to prenatal care. The IOM recommended expanding the Medicaid program and Congress responded. Millions more women became eligible for Medicaid.

Rates of prenatal care went up. Surprisingly, rates of preterm birth did not go down. In 1985, 8% of births were preterm. Today, it is 12%. What went wrong?

The answer reveals much about the complex interaction between biotechnology and people’s choices about how to live their lives. Better prenatal care made childbearing at older ages safer. The average age at which women have their first baby has risen from 23 to 27. Over half of births in the United States are now to women over 30.

Women in their thirties are much more likely to deliver preterm than are younger women, so people’s choices to postpone childbearing lead to many more preterm births. These decisions also lead to higher rates of infertility, the treatment of which also leads to higher rates of preterm birth.

At the same time, advances in neonatal care improve outcomes for preterm babies. Mortality used to be high for babies born a month early. Today, most such babies survive and thrive.

So we have more premature babies and lower infant mortality rates. Is this progress?

It depends upon the measure of progress. Higher preterm birth rates are the price we pay for enhanced reproductive freedom. If we want to lower our rates of preterm birth, we would have to lower the rates at which women over thirty have babies.

Now there’s a bioethical dilemma!

What do you think? Click on "comments" below. http://practicalbioethics.blogspot.com/.

"Just the facts, Ma'am, Just the Facts

(Jack Webb - main character, in TV series FBI, 1950's)

Myra Christopher
President and CEO
Center for Practical Bioethics

Good ethics start with good facts. The fact is: today doctors have medications and techniques to treat pain effectively. Nevertheless, many doctors do not.

One of the major reasons physicians give to explain this discrepancy is their fear of legal and regulatory oversight associated with prescribing "controlled substances" which are critical to effectively treat patients with chronic and terminal pain. This phenomenon is referred to as the "chilling effect."

A study conducted by the Center for Practical Bioethics, Federation of State Medical Boards (FSMB) and National Association of Attorneys General (NAAG) was published this week (9/09) in Pain Medicine, the journal of the American Academy of Pain Medicine. According to the best available data and records, only about one in 1,000 practicing physicians was sanctioned or tried for improperly prescribing pain medications from 1998 to 2006.

This research and that of others also indicates that there are a handful of cases where physicians have been treated unfairly. Charges have been brought and dropped; physicians have been found not guilty, or verdicts have been overturned on appeal.

It is critical that law enforcement, regulatory agencies and the medical community work collaboratively to see that all Americans receive treatment for pain when needed, that investigations of physicians alleged to have mishandled prescription drugs are efficient and fair, and that in those rare instances when physicians have engaged in criminal behavior they are denied the privilege of practicing medicine.

On September 22, the Center, FSMB and NAAG will convene a roundtable in Washington, DC to discuss these critical issues.

Good ethics do indeed start with good facts. It is our hope that this study will help responsible physicians place their locus of concern on treating pain in an informed and effective manner, not on the very small risk that they might do something that could subject them to scrutiny.

Links:

News Release, Few physicians actually tried or sanctioned for improperly prescribing pain medications, September 9

Legal risk for prescribing painkillers is small, study says, American Medical News, September 8

Treating Doctors as Drug Dealers: The DEA’s War on Prescription Painkillers, Ronald T. Libby, Cato Institute, June 16, 2005

Balanced Pain Policy Initiative

What do you think? Please view and leave comments by clicking on "comments" after this post.

Pregnancy, Privacy and Presidential Politics

John Lantos, MD
John B. Francis Chair in Bioethics

The Sarah Palin family offers the nation a textbook of bioethical issues related to pregnancy and childbirth. Some of the issues include:

* After prenatal testing showed Down syndrome, Governor Palin decided to carry the pregnancy to term. Why did she seek prenatal diagnosis? Were there fetal conditions for which they might have terminated the pregnancy?

* Eight months into her pregnancy, Governor Palin was giving a speech in Texas when her water broke. Ruptured membranes increase the risk of infection. Doctors recommend immediate hospitalization. The Governor flew home to Alaska, then drove past Anchorage’s tertiary care centers to deliver in her home town of Wasilla. Was she taking unjustifiable risks?

*Did her daughter Bristol really choose to continue her pregnancy? What choices were offered? Did she, like the movie character Juno, make the decision before telling her parents about the pregnancy?

Questions about the appropriate boundaries of family privacy swirl around the Palin family’s decisions and disclosures. Sadly, personal choices in this realm have been politicized for the last forty years.

The ultimate political choice about such reproductive matters is whether they should be personal and private or not. Already, it seems, Governor Palin’s travails are changing the way both liberals and conservatives talk about such matters.

What do you think? To view and share opinions click on "comments" at the end of this post.