Gotham Gazette

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Who Decides When The Patient Can't?

Every year since 1993, Assemblyman Richard Gottfried has introduced a bill that would give the families of incapacitated patients the legal right to make their medical decisions for them, and every year the measure has been neglected in Albany's end-of-session rush. This year was no exception.

The Family Health Care Decision Act is not as controversial as the bill that would that would have forced employers to give workers health insurance (which didn't make it to a vote after months of high-profile campaigning). It doesn't pack the financial punch of cuts to nursing homes or hospitals ($490 million of which were restored on the last day of the legislative session). But its fourteenth consecutive failure will have tragic implications for a number of New Yorkers, say health care advocates, the state bar association, and others who have been pushing for its passage for the last decade and a half.

A mixture of indifference and culture-war politicking, they say, means that New York continues to deny its residents a right shared by most other Americans.


In New York, the family members of incapacitated patients are explicitly denied the right to make medical decisions for them.

This stems from a 25-year old court decision involving two patients with terminal conditions. One had specifically asked not to be kept alive if he fell into a permanent vegetative state; the courts ruled that the hospital should take him off a respirator. But it decided the other way in the case of a man with severe mental retardation and bladder cancer who complained of painful blood transfusions. His mother asked doctors to stop the transfusions -- which were expected to keep him alive for a matter of months -- but they refused. The state Court of Appeals ruled that such action could only be taken if the patient himself made a "competent request" (which the man could not make because of his mental condition).

This standard continues to exist today, even as most states now have laws specifically granting families the legal authority to make major medical decisions for loved ones. Aside from New York, Missouri is the only other state with such an explicit restriction.

In reality, the law does not always matter; doctors generally consult with patients’ families about treatment. But it is in the most difficult situations –those that involve a decision about whether to continue someone's life – when the restriction becomes an issue.

“It's only in the worse cases when things are really going wrong when people realize they really have no authority,” said Jack Freed, a physician working to change the state's policy. Patients have been left in legal limbo in such situtations, he says, because no one has the authority to stop sometimes painful and futile treatment.

There is a consensus among experts in the medical field that the best way for individuals to avoid this problem is to complete a health care proxy – a form officially designating someone else to make one's medical decisions – before they get ill.

But only 10 percent to 25 percent of New Yorkers have health care proxies today. After the Terry Schiavo case, there was a push to get more people to sign the forms, but it quickly died down. Experts believe that the numbers will not get much higher.

"I think you reach a point where those people who are going to do it have, and those who aren't going to do it are never going to," said Carol Levine, head of the Families and Health Care Project at the United Hospital Fund.


The Family Health Care Decisions Act would set up a framework for determining who should make medical decisions when people cannot make their own. With the guidance of a physician, decisions would be made based on what family members believe a patient would want.

Allowing family members to stop a patient's life-sustaining treatment has the potential to be controversial – it was at the heart of the ugly Schiavo battle last year. But over 30 states have passed such laws. In New York, there is little opposition to idea at the core of the bill.

"What has happened to this legislation is that other issues – unrelated issues – have become attached to it," said Mark Alcott, head of the New York State Bar Association, which had made the bill a legislative priority this year.

These issues include two of the country's more intractable controversies: abortion and the legal status of domestic partnerships.

Gay rights groups are urging lawmakers to give domestics partners equal weight with spouses in the law, putting them first in line to make decisions. But while there was some debate over this language, the major point of contention for the past several years has related to the health of fetuses.

The New York State Catholic Conference has no stance on the domestic partnership language but insists that there be a guarantee that the health of a fetus be considered when making decisions made for pregnant patients.

Some advocates of the bill went along with this, arguing that it made no practical difference. "Obviously people would take it into consideration," said Freed. "It has no real practical effect."

As a result, the Catholic Conference dropped its previous opposition.

But earlier this month, Deborah Glick and several other members of the State Assembly decided to make an issue of the domestic partnership and fetus language. They convinced the assembly to pass a bill with the pregnancy language removed, over the Catholic Conference's renewed opposition.

"We had come off that position of opposition and had no position, until the bill was amended," said Dennis Poust of the Catholic Conference after the assembly passed its bill. "What they have done is effectively kill any chance of this bill passing."

The State Senate bill included the pregnancy considerations, meaning the two would have had to have been reconciled if they passed. But the Senate never touched the bill, and the legislative session ended without it becoming law, once again. Neither Gottfried nor James Seward – the Senate bill's sponsor – returned calls for comment. But if history is any guide then they will start pushing for the act again in January.


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