Supporting Family Health Care Decisions www.familydecisions.org

• FRIA
• Zisfein
• Freer
• Steinberg
• Bradley
• Freer 2
• Waz
• Verber

Friends and Relatives of Institutionalized Aged
STATEMENT IN SUPPORT OF ASSEMBLY BILL 4114
FAMILY HEALTH CARE DECISION-MAKING ACT

New York is one of only three states where the families or close friends of mentally incapacitated patients do not have the automatic right to represent them in health care decisions. Instead only a health care agent who was designated by a patient prior to losing capacity, is legally allowed to make decisions. Only an estimated 15%-20% of New Yorkers have filled out health care proxies naming agents. Despite educational efforts, many New Yorkers continue to believe they won't need a legal document to make medical decisions for a spouse, child or partner.

The Family Health Care Decision Making Act would give the same rights to all New Yorkers concerning medical decision-making, regardless of whether a health care agent has been designated. To resolve the question of the decision-maker, the bill specifies the appointment of relatives or friends closest to the patient, most likely to know the patient's wishes and to have the patient's interests at heart.

The bill has the support of such a broad range of organizations-consumers, providers, and professionals-because all share a desire to establish a clear way to determine who makes decisions. The bill is a carefully drawn and negotiated compromise, stating a position all can support. The work to draft this legislation was carried out by the New York State Task Force on Life and the Law over a period of several years.

Dear Mr. Schneiderman:

I am a physician on staff at Lincoln Hospital, and a resident of the Upper West Side for 18 years. I am writing in support of the Family Health Care Decisions Act.

Because of unfortunate New York State court decisions and legislative inaction, ours is one of only two states that prohibit families from making critical health care decisions for incapacitated loved ones who have not expressed their wishes in advance - as few of us have done. In my practice, I see patients daily who forced to live in permanent unconsciousness and indignity because their families and physicians are forbidden from removing medical support that any reasonable person would consider a mockery of compassionate care.

It is time - no, long overdue - that we take the right to make health care decisions away from the government and give it back to the family where it belongs.

Please do everything within your power to bring this bill before the New York State Senate and pass it in the current session.

James Zisfein, M.D.

Subject: SUPPORT A.4114 Family Health Care Decisions Act

Dear Senator _________

1.) This bill is long overdue in NYS which has the most backward case law in the country in regard to medical decision making for incapacitated patients. This bill would simply codify what most people already believe to be the case: that close family members can make medical decisions for incapacitated loved ones.

2.) Health Care Proxies are invaluable for directing such decision making authority but most people do not take advantage of this, and many can't. Those elderly patients already afflicted with Alzheimers and other dementing illnesses may no longer execute a proxy and their medical care is left to the (often flawed) interpretation of required care made by those in institutions. This bill would place authority for medical decisions in the hands of loving families rather than nursing home administrators and lawyers.

I urge you to carefully look at this issue and consider giving it your enthusiastic support. I am happy to discuss this with any members of your staff.

Sincerely,

Sample letter in support of The Family Health Care Decision Act (A4114)

I urge you to support the Family Health Care Decision-Making Act (A4114).

New York should not remain one of only three states that prohibit family members and close friends from participating in medical decisions when an incapacitated patient who has not designated a health care agent is unable to do so.

I strongly believe that the right to participate in health care decisions should not be withheld from those who know the patient best and care for him or her the most. To leave such decisions to the discretion of doctors, administrators, and judges, instead of loved ones who know the individual's wishes and beliefs, is heartless and disrespectful.

Thank you for your consideration of this important bill.

Sincerely,

(Include any personal anecdotes or information about how the bill will impact you and your family. Personal stories from people who have been disenfranchised by our current laws can be especially persuasive.)

Sincerely,
Edward B. Bradley, M.D., FACP

Dear Senator Bruno:
I am writing to urge your support for a Senate version of the Family Health Care Decisions Act (A.4114). I believe your strong support for this important measure would pave the way for this bill to get a fair hearing in the Senate.

I have been Chair of the Millard Fillmore (now Kaleida Health) Ethics Committee since 1985 and have seen too much misery and suffering as a result of the bizarre NYS case law for incapacitated patients. Families are completely cut out of the decision making unless they fabricate stories about the patients' wishes while competent.

Health Care Proxies are invaluable for directing such decision making authority but most people do not take advantage of this, and many can't. Those elderly patients already afflicted with Alzheimers and other dementing illnesses may no longer execute a proxy and their medical care is left to the (often flawed) interpretation of required care made by those in institutions. This bill would place authority for medical decisions in the hands of loving families rather than nursing home administrators and lawyers.

PLEASE DO THE _RIGHT_THING_ AND LEARN MORE ABOUT THIS SENSIBLE LEGISLATION (WRITTEN BY THE TASK FORCE ON LIFE AND THE LAW) AND PROMOTE THE BILL AMONG YOUR COLLEAGUES IN THE SENATE.

Thank you very much.
Jack Freer
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Jack P. Freer MD -University at Buffalo
Center for Clinical Ethics and Humanities in Health Care

I am Chair of the Children's Hospital of Buffalo Ethics Committee and have seen much misery and suffering as a result of the unusual NYS case law for incapacitated patients. My particular concern as a pediatrician is that families are unable to make many end-of-life decisions on behalf of their dying children who do not fit the NYS criteria for prior expression of medical preferences. Health Care Proxies are invaluable for directing such decision making authority in previously-competent adults, but most people do not take advantage of this, and many can't. Children and the profoundly developmentally delayed can not designate Health Care Proxies or execute Advance Directives, and parents are often unable to consider options for limiting care other than "Do Not Resuscitate" orders, often prolonging only the illusion of life at the expense of significant pain and suffering. This bill would place authority for medical decisions in the hands of families, and allow parents to consider the range of end of life options that are available to parents in other states.

I thank you in advance for your efforts to learn more about this legislation (written by the NYS Task Force on Life and the Law). I would be happy to speak with you about the implications of this legislation for families and practicing pediatricians, and would particularly like to share with you some stories of unfortunate outcomes which could have been avoided. I hope you will promote a senate version of the bill among your colleagues in the Senate.

Sincerely,

Wayne Waz, MD

The Family Health Care Decisions Act (A.4114) needs your immediate attention. It has been floundering in the NY Senate for seven years. New York needs a law specifying family/close friends who know the patient's wishes (or in the case of no family, an ethics committee). Most people think that their family would automatically make medical decisions on their behalf if they were unable to, only to find out that that is not so in New York State. It is so in 48 states. It is outrageous that strangers can make end-of-life decisions for the incapacitated but not family. I've known it to happen, as a nurse and an EMT.

Only 15% of New Yorkers have written their preferences in a "Health Care Proxy". This law would not alter that arrangement, it would complement it. If you got attacked or hit by a stroke (or a truck) while alone, you may not be able to tell anybody, and nobody there would know, that you have a written Health Care Proxy. It is customary to notify the family, but that takes time and even then they have no authority in law to make known the intentions of the person. As it is now in NY these decisions are often made for other than medical reasons; the insurance company says what it will pay for, the nursing home gets a larger reimbursement, the EMT has protocols to follow.

Please let this bill come to a vote in the Senate. It is long overdue and I am sure there is general agreement on its passing.

Sincerely,

Christine Hindle Verber EdD, RN