By MATT CHANDLER
Buffalo Law Journal

In a move that proponents called "exciting" and "long overdue," Gov. David Paterson signed the Family Health Care Decisions Act into law last week.

The law, which took 17 years to pass, eliminates the need for a health-care proxy to be in place in order for a family member to make medical decisions on behalf of an incapacitated person. Prior to last week's signing, New York stood alongside Missouri as one of two states without some law to allow for family members or life partners to act on behalf of loved ones who are incapacitated.

Dr. Patricia Bomba, vice president and medical director of geriatrics for Univera Healthcare, has long supported passage of this law.

"It really has been a struggle," she said. "There were a lot of ethical issues to overcome, religious issues and some political hurdles that had to do with where domestic partners would fall into place as well as issues related to the definition of a fetus."

Bomba said continued collaboration from everyone involved led to consensus among various interested parties. Among other provisions, the law includes domestic partners for the first time in New York as legally recognized decision-makers for an incapacitated partner.

"It's unfortunate it took so long, but I can tell you, having worked on it for many years, it's a day to celebrate," Bomba said.

Sources from the medical and legal fields stressed that the act does not replace or trump an existing health-care proxy, but fills the gap for those who fail to make such arrangements.

Univera Healthcare commissioned a statewide survey in 2008 to determine people's attitudes, awareness and participation regarding health-care proxies. While 90 percent of those surveyed said they felt it was important to have a health-care proxy in place, only 42 percent of those questioned had one. Participants were also asked about a living will, another type of advanced-planning document that specifies a patient's wishes and guidelines for medical care in the event of an irreversible terminal condition. Again, despite 80 percent of those polled saying it was important, only 26 percent had completed one for themselves. Despite the low numbers, Bomba said the completion rates in Western New York (44 percent) is considerably higher than the national average for health-care proxies, typically seen in the 30 percent range.

Advance directives still important

Those low numbers concern estate-planning lawyer Linda Stravalachi Grear. As the chair of HoganWillig's estate-planning/elder-law practice, Grear sees firsthand the number of people who are unprepared when it comes to advanced planning. She worries that the new law may leave people with a false sense of security, thinking they no longer need a health-care proxy.

"I think in general, the legislation does serve a purpose in that it will assist families that didn't do advanced planning and take down some roadblocks that existed before," she said. "But what it's not going to do is solve problems where people want to make decisions for themselves. Particularly when you have families that may have arguing between siblings and disagreements about care, it is going to make things difficult still."

Grear said the easiest way for families to avoid those potentially disastrous situations is to have frank and open discussions about health care before the need arises.

"The important thing about having a health-care proxy is that you are making those decisions yourself and you can put into writing exactly what your specific wishes might be," Grear said. "This act does not address things like feeding tubes and respirators specifically. It allows the family to make decisions, provided that there is clear and convincing evidence of what that decision might have been."

Another area that is not covered by the new law is home-based care. That is a point that troubles Bill Finn, president and CEO of Hospice Buffalo.

"Everybody has been pushing on this simply because it is the right thing to do," Finn said. "Now that we have the law, the issue is that it speaks to patients in the hospital and skilled-nursing settings only. It doesn't really address home-based care, and therefore doesn't address most of hospice care."

Like Grear, he sees the law as a positive step, but one that leaves work to be done.

"Without advanced directives for care, the family is put in a very precarious situation of trying to figure out what to do," Finn said. "This law clarifies the decision-making hierarchy, but since it doesn't apply to home-based care, there isn't a measured order of decision-making that can be turned to today." He said he is optimistic, based on both public and private comments from legislators, that an amendment will be worked out to add the home-based component to the law.

Dr. Kathleen Mylotte, associate medical director for quality and disease management for Independent Health, said there is another element that people often don't think about when it comes to end-of-life decision-making.

"People need to realize that for people who have an incurable disease, you get to a point in the process where medicine can no longer fix it," she said. "Yet we will sometimes continue to provide treatment which can really decrease quality of life and inflict a fair amount of suffering because there is nobody with the legal authority to decline that treatment and therefore that treatment has to be continued. We end up prolonging life, but at a fairly steep cost in terms of suffering."

Like her colleagues, Mylotte stresses the importance of having specific advanced-planning directives in place to avoid not only unnecessary treatments, but the potential legal battles Grear alluded to.

"It's been difficult in New York state when one has a patient with an end-stage terminal disease who is carrying a significant burden of illness and who doesn't have that formal declaration of health-care proxy," she said, "especially where there is a divide in the family." Mylotte said the potential for legal liability if a physician goes against the wishes of a disagreeing family member can be a factor in determining treatment.

"As a physician, that's the rock and the hard place, and if we feel we may be in a liability position, we will request legal assistance," she said. "The best way to avoid those situations is for people to have made formal plans ahead of time."