Wednesday, July 26, 2006
End-of-Life Decision-Making and the Politics of the Fetus
BY CARL H. COLEMAN

During the 1990s, I worked on the staff of the New York State Task Force on Life and the Law, a bioethics commission established by Governor Mario Cuomo in 1985. During my interview for the job, in the spring of 1993, I learned that the Task Force had recently proposed legislation that would authorize family members to make treatment decisions for incapacitated patients, including decisions about life-sustaining measures, and that New York was one of only a small handful of states that did not already have case law or legislation giving family members these rights. However, I was told that I would probably not have an opportunity to work on the legislation because, by the time I would be able to start work in the summer, the bill would probably already have been enacted.

Thirteen years later, the legislation, now known as the Family Health Care Decisions Act, is still languishing.

The reasons the bill has been held up all these years are not the ones you might suspect. The “sanctity of life” versus “quality of life” issues that dominated the national debate over withdrawing Terri Schiavo’s feeding tube have been largely absent from the discussion in New York. In fact, hardly anyone has opposed the basic goals of the legislation. On all sides of the political spectrum, there is widespread consensus that the current legal standard – which requires physicians to provide all life-sustaining measures, no matter how burdensome, unless there is “clear and convincing evidence” of the patient’s prior decision to refuse them – is both unworkable and inhumane.

Instead, the main reason the bill has not become law has to do with one word: “fetus.” Specifically, the Senate version of the bill states that, for patients who are pregnant and whose wishes about treatment cannot be determined, the surrogate shall consider “the impact of treatment decisions on the fetus and on the course and outcome of the pregnancy.” The Assembly version does not contain this language. Neither house seems willing to budge.

What is so interesting about this debate (“tragic” would probably be a better adjective) is that virtually everyone agrees that the “fetus language” has no practical significance for how decisions would be made for incapacitated patients. The language appears in the section of the bill that defines the “best interests” standard, which is the standard that applies to patients whose wishes cannot be determined. That section provides that, in assessing the patient’s best interests, the surrogate should take into account any factor that “a reasonable person in the patient’s circumstances would wish to consider.” The impact of treatment decisions on the pregnancy is offered as one of several examples of such factors. The bill does not tell the surrogate how to consider the impact of treatment decisions on the fetus; it simply points out that this is a factor the surrogate should take into account. Admittedly, it is hard to imagine that any surrogate would need to be reminded of this, but the same could be said for many of the other factors that are specifically mentioned – for example, “the possibility and extent of preserving the patient’s life,” and “the relief of the patient’s suffering.” The bill emphasizes that the surrogate’s consideration of all the best-interests factors “shall be patient-centered” and “consistent with the values of the patient.”

All of the major pro-choice groups in the state examined the language and decided that it was innocuous. In fact, one of them (the New York Civil Liberties Union) testified that the language actually “creates greater protections for pregnant women and strengthens reproductive rights by requiring the surrogate to adhere to the woman’s values and by eliminating the possibility of intervention by the State or third parties unknown to the patient who may wish to impose their values and beliefs upon the incapacitated woman.” Similarly, on the anti-abortion side, the New York State Catholic Conference has acknowledged that, as much as they had hoped that the legislature would use this opportunity to recognize “fetal rights,” the fetus language, as currently written, does not do that. In discussions with legislators – both supporters and opponents of the fetus language – there has been nearly unanimous agreement that the language would not change the decision-making standards in any way at all.

Why, then, has the fetus language proved to be such a stumbling block? On the Assembly side, some members have taken the position that simply mentioning the word “fetus” creates a dangerous legislative precedent. If fetuses are mentioned in this bill, the argument goes, they might be mentioned in another one next year, and even if this bill mentions the fetus is an acceptable way, next year’s bill may not. In other words, for some members of the Assembly, “fetus” has become a dirty word.

This position is both illogical and, for anyone concerned about reproductive rights, dangerous. It is illogical because it would be impossible to have a legal system that never mentions fetuses. According to my research assistant, the word “fetus” appears 42 times in New York State statutes and regulations; the words “pregnant” or “pregnancy” appear an additional 479 times. These words appear in diverse areas of the law, ranging from food labeling requirements to laws giving pregnant women access to specialized medical services. In general, whenever the word “fetus” or “pregnancy” is mentioned it is to the benefit of pregnant women.

From a reproductive rights perspective, it is also a dangerous position, as it reinforces the mistaken view that “pro-choice” means “anti-fetus.” Being pro-choice means supporting the right to decide whether or not to become or remain pregnant, and people who are pro-choice decide to remain pregnant every day. Those people care as much about their fetuses as opponents of abortion.

Yet, while I believe the Assembly is wrong to object to the fetus language, it is also true that the entire problem would disappear if the Senate were willing to amend their bill to omit the disputed words. Given that everyone acknowledges that the language has no practical significance, there is no reason for the Senate to insist on keeping it. Just like the Assembly, they are playing politics with the word “fetus” – in this case insisting on keeping the word in the statute to score symbolic points with anti-abortion voters.

Meanwhile, countless families are suffering because of New York’s antiquated laws.

This commentary appears by arrangement with the American Society for Law, Medicine, and Ethics.

Comment on this essay.

Comments are sent to the forum moderator. Select responses may be posted.

A Phony 'War on Science'
Michael Gerson, Washington Post
“In their talk of a Republican war on science, liberals may be blinding themselves to a very different kind of modern war in which their own ideals are deeply implicated: a war on equality.”

It’s Not Immoral to Want to be Immortal
Arthur Caplan, MSNBC
“Despite a lot of hand-wringing and finger-pointing, it is not obvious that wanting to live a lot longer is evil or immoral.”

Science Is Leading Us to More Answers, but It's Also Misleading Us
David A. Shaywitz, Washington Post
“Consumers of scientific information must balance the hope we place in global biology with the skepticism this field has surely earned.”

Taking the Scary out of Breast Cancer Stats
Carol Tavris and Avrum Bluming, LA Times
“The media understand how deeply women fear breast cancer, and the result is that every study that seems to find a link between some new risk factor and the disease makes headlines everywhere.”

Dollars to Doughnuts Diagnosis
Albert Fuchs, LA Times
“Insurance doesn't make routine care affordable; it makes it more expensive by adding a middleman.”

Tainted Medicine
Jerome P. Kassirer, LA Times
“Disclosure of financial ties may give a scientist or researcher a clean conscience, but that doesn't erase the possibility of a conflict.”

Children's health can't be left to faith alone
Arthur Caplan, MSNBC
“Parents do not have the right to watch a child wither away while they pray.”

Transplant List Numbers Raise Doubts
Arthur Caplan, MSNBC
“The American people have a right to expect absolute honesty about the number of people waiting for a transplant at any time.”

An Epidemic No One Wants to Talk About
Robert E. Fullilove et al., Washington Post
“Simply put, we will never rid the United States of HIV and other STDs if our only weapon is medical treatment.”

Making Cells Like Computers
Erik Parens, Boston Globe
“Conceivably, we are on the verge of installing synthetic genomes in bacterial cells to create products we want. But we are still a long, long way from doing what most people mean by ‘synthesizing life.’”

Miracle Workers?
David Rieff, New York Times Magazine
“Even today, the oldest of all relations between patient and physician — that of supplicant to shaman — continues to exert its authority.”

Overselling Overmedication
Judith Warner, NYTimes.com
“Most of the critics decrying the over-medicalization of the American mind rest their arguments upon the bedrock assumption that people who have nothing wrong with them are being medicated for largely fictitious concerns.”

Ads Spur Urge for Drugs
David Lazarus, LA Times
“DTC advertising has turned prescription drugs into just another gotta-have-it consumer product.”

Food Politics, Half-Baked
James E. McWilliams, New York Times
“Lost in this rhetorical battle was a quiet middle ground where the benefits and drawbacks of genetically engineered crops were responsibly considered.”

Perpetrating the Autism Myth
Benjamin Kruskal and Carole Allen, Boston Globe
“The scientific evidence is clear: neither the MMR vaccine nor thimerosal (mercury) in vaccines has any relationship to autism.”

Closing the Barn Door After the Cows Have Gotten Out
Verlyn Klinkenborg, New York Times
“The real beneficiaries are the nation’s large meatpacking companies — the kind that would like it best if chickens grew in the shape of nuggets.”

Human Embryos Cloned: What Does It Mean?
Art Caplan, MSNBC
“Let's not be frightened by scare tactics into not funding research that may be the key to curing what is currently incurable.”

Don’t Ask, Don’t Tell Is Bad Policy for Cloned Food
Art Caplan, MSNBC
“All of this fear-mongering about clones has made Americans forget that cloning is nothing more than artificially creating twins.”