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.
Â
Nearly every person in Massachusetts will have health insurance by next July, officials there claimed recently, thanks to a plan that combines government action with responsibilities for employers and individuals. Maryland is toting its plan to force large employers to provide insurance (actually, the law applies only to Wal-Mart), and the former governor of Oregon believes that his state should abolish Medicaid and Medicare, replacing them with a public health plan that all state residents are eligible for.
State governments have always played a role in providing health insurance. But experts say there is increasing energy coming from state officials, largely because there is so little of it in Washington.
In New York State, almost 3 million people lack health insurance -- six out of ten of those live in New York City. The uninsured have less access to health care, and, consequently, poorer health, than those with insurance. In addition, the large uninsured population also places financial burden on both the governments and private hospitals that serve them.
Unlike some places elsewhere in the country, New York State officials are not hard at work on a magic bullet for universal health care coverage. A bill is advancing through the legislature, however, that would require large employers to insure their workers. The bill's supporters are optimistic its chances, but they also acknowledge that at best it is only a small piece in the puzzle. So as they develop state policy here, officials and health experts have been watching more ambitious plans elsewhere.
Across the country, state legislators are considering bills that would penalize employers who don't provide health insurance. Such a law already exists in New York City. The law's scope is fairly limited, but is currently in court because Mayor Michael Bloomberg has challenged its legality.
New York State's more ambitious attempt at an employer requirement is called the Fair Share for Health Care bill. This bill would require all businesses with more than 100 employees to pay $3 per hour per employee for health insurance, an amount based on the estimate of how much it costs actually to insure someone.
Supporters of the legislation argue that some large employers rely on public health insurance programs for their employees, instead of providing health insurance themselves. This is both a drain on taxpayers and an unfair advantage over those employers who do provide health insurance. Advocates for such laws nationwide say that the momentum for employer requirements is already putting pressure on large companies like Wal-Mart to reassess providing health insurance for their employees.
But critics say that it distorts the labor market. In other states employers have found loopholes, or have cut back on the amount of business they do, argues Regina Herzlinger of the Heritage Foundation.
The legislature is planning hearings on the bill for May. Even if it passes, though, its supporters say there will hardly be a reprieve. This bill is intended to keep employers from exploiting Medicaid, said Richard Gottfried, its primary sponsor in the assembly; it "is not meant to be a solution to the uninsured."
Massachusetts became the center of attention in April when it announced a plan that it claimed will provide near-universal health coverage for its citizens by the middle of next year. Everyone from the state's Republican governor to the New York Times' editorial page heralded the plan as a possible model for other states.
Democratic gubernatorial candidate Eliot Spitzer recently indicated his "great interest" in the plan, and Republican candidate William Weld (himself once governor of Massachusetts) said it could be a "brilliant political achievement."
Not everyone believes that the plan will work for Massachusetts. Even if it does, say others, there is no guarantee it would work in New York, which has a greater percentage of uninsured workers and a larger population in general.
But there is no question the plan is being watched carefully.
"The project is both novel and ambitious," said Alex Navarro of the Working Families Party, which is working on the Fair Share for Health Care bill and is dubious of the potential of the Massachusetts plan. "Those are qualities that get people's attention."
Massachusetts has patched together a mixture of action by individuals, employers, and the state government to form its plan.
Everyone in Massachusetts must find a way to get health insurance by July 1, 2007 – supporters compare the requirement to the one that says drivers must have auto insurance. Using information from tax returns, the state will determine who does not have health insurance, and fine them.
The success of this approach will rely on whether people actually buy insurance – and that means helping those who have not been able afford it in the past. The state will subsidize health insurance for those whose incomes are less than triple the poverty rate. Massachusetts also plans to expand Medicaid, the government health insurance program for low-income people.
Employers who do not contribute to the health insurance costs of their workers must pay a $295 annual fee for every employee.
The political success of this approach is that it has managed to be all things to all people. The government and business contributions appeal to liberals; the stress on personal responsibility and consumer choice pleases conservatives.
"All Massachusetts citizens will have health insurance," wrote Massachusetts Governor Matt Romney in the Wall Street Journal. "It's a goal Democrats and Republicans share, and it has been achieved by a bipartisan effort."
But everyone didn't really agree on everything.
Romney toted the plan's "market reforms". But he called the portion that required employers to contribute to health insurance "unnecessary and probably counterproductive", and vetoed it. The legislature is expected to override this move.
Meanwhile, critics questioned the market's ability to solve health care problems. Unless there are enormous subsidies, they say, decent health coverage will remain unaffordable for those with low incomes who don't qualify for Medicaid. Some have also described the employer's role as simply symbolic.
"It's hard to imagine that they're going to be able to provide high quality care to everyone with the money they intend to spend," said Mary O'Brien of the New York chapter of the Physicians for a National Health Plan, a group that has referred to the plan as a "cruel hoax."
Â
New York City is getting healthier, with fewer people smoking, fewer new cases of HIV, even fewer people dying; the city’s death rate recently hit a historic low. But there is one major health problem that is getting worse in the city -- diabetes. And, New York City Health Commissioner Thomas Frieden said recently, “it’s getting worse much more quickly than anyone could have imagined.”
That is why the Bloomberg administration is taking some unprecedented steps to curb what the mayor calls “a vicious silent killer.”
The highlight of the administration's efforts so far has been the establishment of a citywide registry (a collection of medical data) to give officials a better picture of the city’s epidemic. This is the first attempt by an American city to track a chronic disease. While the registry will not create a direct medical benefit to many patients now, health experts are hopeful that it will serve as the foundation for a comprehensive approach to dealing with diabetes in New York City.
“If the city’s information system works well and patients’ confidentiality is maintained, the registry initiative could be a first step towards other effective -– and no doubt more costly –- interventions,” wrote Robert Steinbrook in the New England Journal of Medicine.
Type 2 diabetes is a disease that keeps the body from breaking down sugars in food correctly. (There is a type 1 diabetes, but it is rare, and generally when people refer to diabetes they are speaking about type 2). Genetics play a role in whether a person develops diabetes; so does obesity. Blacks, Latinos, and Asians are both more susceptible to the disease genetically and, in New York, more likely to be overweight than whites, so racial minorities and new immigrants suffer disproportionately from diabetes here, as a recent series on diabetes in the New York Times made clear.
The disease is chronic and incurable, but it is manageable. Diabetics must watch their blood sugar levels, and adjust their diets accordingly. If they do not keep these levels under control, diabetics can lose limbs, or go blind. Their kidneys fail, and they have heart attacks and strokes.
As America gets fatter, diabetes rates are skyrocketing nationwide, with serious consequences. The total economic cost of the disease nationwide in 2002 was $132 billion, with 11 percent of national health care expenditures dedicated to the disease.
But if diabetes is hitting the entire country hard, New York City is in the worst shape: A greater percentage of New Yorkers are already affected by the disease, and the number of new cases here is rising more quickly than elsewhere. There are about 530,000 documented cases of diabetes in New York City, and an estimated 265,000 New Yorkers who have the disease but do not know it. In 2004, 1,734 New Yorkers died of diabetes, making it the fifth-leading cause of death in the city. But because many diabetes deaths are attributed to complications and not the disease itself, the city believes the true toll is much higher.
Diabetics regularly monitor their blood sugar with a standard test -- or at least they should. The health department’s proposed budget this year includes $2.7 million to fund a registry that will collect and analyze this data.
The program is already underway. In January, city officials began collecting the results of those blood tests by requiring laboratories that administer them to report the results. Officials hope to track the progress of individual patients, and also to get an exact picture of how diabetes is affecting New York City as a whole.
The city is gathering information across the city, but the initial effort of the registry is focused on the South Bronx, where diabetes rates are among the highest in the city. There, the health department will monitor patients’ progress, contacting them through their doctors if it sees that their blood sugar levels are persistently high, or that they are not getting the tests regularly enough. While doctors could probably do much of this on their own, the city argues that it is better equipped to handle such large sets of data, and that its efforts will take some of the burden off individual doctors.
If all goes well in the Bronx, the health department will use that pilot program as the basis of a citywide effort. By early next year, it will have a clear view of diabetes in New York City –- which populations are most affected, where they live, how they are being treated. Officials hope that some idea will emerge from this data about how best to help diabetics manage their disease.
Medical professionals seem excited about the potential of the registry. Jacqueline Salas-Spiegel of the Naomi Berrie Diabetes Center at the Columbia University Medical Center hopes the data from the registry will be used to identify the ages at which children are most likely to begin developing diabetes, and which parts of the city they live in. Then, she says, the city can deploy teams of "roving nutritionists" to their schools, with the aim of offsetting some of the unhealthy habits that lead to diabetes.
But others are raising questions about whether this registry invades New Yorkers’ privacy. “To pass along information like this without the patient’s even knowing I think is a violation, ” said Councilmember Yvette Clarke, who represents Flatbush, where people die of diabetes at a fifty percent higher rate than in the city as a whole.
People who don’t want to be contacted about their results can opt out through 311 or over the Internet, but their information will continue to be part of the registry. The health department says that it needs access to all the data if it is going to reach useful conclusions. Frieden has pointed out that the city has a good track record in managing confidential databases.
The challenge with diabetes, say city officials and medical professionals, is that managing or preventing it requires a change in behavior. They acknowledge that collecting comprehensive data and refining the techniques used by doctors will not solve the problem of diabetes unless the city can use those tools to convince New Yorkers to adopt the healthier habits that are the only real way to counter diabetes.
"What we need to do is work to change the [social] environment," said Frieden.
The city is now establishing outreach campaigns to try to change the behavior of several groups of diabetics, including veterans, and women who develop diabetes while they are pregnant, which is called gestational diabetes. While gestational diabetes is temporary, women who develop it are more likely to end up with chronic diabetes in the future, as are their children.
Critics point to ways that City Hall is undercutting its own efforts:
At a time when less than half of children maintain a healthy weight, the city signed a deal with Snapple giving the beverage company the exclusive right to sell its sugary juices and iced teas at schools and public buildings.
The city recently started charging for several recreation centers in low-income neighborhoods where those at the highest risk of developing diabetes had been able to exercise for free. While the city argues that the fees are modest, the Independent Budget Office recently showed that adding fees to recreation centers elsewhere in the city has led to lowered rates of use (in pdf format).
Also, the mayor's proposed budget includes about $9 million less money for child health clinics run by the Health and Hospitals Corporation; critics worry these reductions will lead to poorer health care for those who have relied on them.
These decisions highlight what Salas-Spiegel sees as one of the major roadblocks to a comprehensive diabetes program. Programs encouraging exercise and better dieting habits are the only known way to stop the rise of the disease, and success in the long run would prove to be cheaper than having to deal with the horrible consequences of the disease -- the amputations, the heart attacks. But it is difficult, she says, to devote the necessary resources now without the promise of immediate payoffs.
"If we prevent all this from happening it would be a tremendous savings," said Salas-Spiegel. "But would we then be able to transfer those funds saved to the prevention and education side? That remains to be seen."