Statement of the New York State Nurses Association, submitted to the New York State Assembly Health Committee, December 8, 2005
The New York State Nurses Association (NYSNA) appreciates the opportunity to inform the Assembly Health Committee of its support for the establishment of procedures that would give family members and others who are close to patients the right to make health treatment decisions on behalf of persons who are unable to make these decisions themselves.
NYSNA is the professional association representing the interests of over 200,000 licensed registered nurses in the state of New York. As the oldest and largest union for registered nurses in the state, NYSNA is the collective bargaining representative for RNs working at more than 150 facilities, including hospitals, nursing homes, clinics, home care agencies, hospices, schools, and public health agencies.
The Association strongly supports the development of policy that supports patient advocacy in end-of-life healthcare issues. Our members are greatly concerned about the issue surrounding the authorization of “surrogates” who would advocate for patients who are no longer able to make their own healthcare decisions.
NYSNA is one of nearly 50 civic, health care, legal, and religious organizations that support the Family Health Care Decisions Act (A.5406/S.4296), whereby a “surrogate” would be authorized to make decisions for a patient who has lost decision-making capacity and has not appointed a healthcare agent.
Statutes have been enacted in 35 states and the District of Columbia that grant family members and others close to patients the right to make medical decisions for incapacitated patients. In 1992, the New York State Task Force on Life and the Law published a report, When Others Must Choose: Deciding for Patients without Capacity, which included a legislative proposal for surrogate decision-making in cases where patients had not (or could not) execute health care proxies (HCPs).
The need for surrogate decision-making legislation is particularly crucial in the New York State because the Court of Appeals has held that life-sustaining treatment may not be withheld or withdrawn from incapacitated patients without "clear and convincing evidence" of the patients’ wishes. This rigid standard has proven to be unworkable in healthcare practice, as it leaves families helpless to start or stop life-sustaining treatments for incapacitated patients who have not left specific advance instructions about treatment or designated an HCP.
According to the Family Decisions Coalition, fewer than 25% of adult New Yorkers have signed HCP forms. Perhaps the remaining 75% assume that family members or loved ones will make healthcare decisions for them when the time comes. Research reveals, however, that a standardized assessment of document literacy showed that only 6% of respondents (87% of whom scored at the 9th-grade level on basic health literacy) understood the instructions for completing a New York State HCP form (Health Advocacy Program, 2005).
New Yorkers who have not signed an HCP form should be offered no less protection by the law than those who have appointed a proxy. The Family Health Care Decisions Act would ensure that state law protects the rights of all incapacitated patients in hospitals and residential care facilities, ensuring that they can live with dignity and receive health care that is in their best interests and is consistent with their own wishes and beliefs.
The Family Health Care Decisions Act allows family members or others close to the patient the authority to make treatment decisions for incapacitated patients who have not signed an HCP form or left specific oral or written treatment instructions. NYSNA is particularly pleased to see that the bill includes language that recognizes non-traditional family members who are close to the patient. In addition, the legislative language provides a system of guidelines for reaching a decision that is consistent with the patient’s wishes and reflects the patient’s religious, ethical, and philosophical attitudes toward treatment. Life-sustaining procedures are given the highest priority in determining decisions about the patient’s health care.
This hallmark legislation goes a step further in advocating for patients. The bill recognizes that some patients may have no family members or caring friends available to make healthcare treatment decisions. These patients are particularly vulnerable to delays in receiving or not receiving treatments in a manner consistent with their wishes and beliefs. This legislation would allow decisions to be made by a committee with input from the patient’s care providers. The proposal clearly recognizes the role of nurses in the interdisciplinary care team and stipulates that recommendations from the nurses who care for a patient must be included in the surrogate decision-making process.
NYSNA recommends that the bill be amended to expand the definition of attending physician to include the patient’s personal healthcare provider. There are many instances in this state where an “attending” may be a nurse practitioner, midwife, or other authorized healthcare professional.
While the Do-Not-Resuscitate and Health Care Proxy Laws are effective mechanisms for many New Yorkers, NYSNA asks that the Legislature extend those protections to the 75% who have not explicitly stated their wishes or named their surrogate decision-makers. Enactment of legislation to establish a workable process and standard for making decisions for incapacitated patients is humane and equitable. This proposal will allow nurses to deliver care and advocate for their patients in a manner consistent with patients’ wishes and beliefs.
Family Decisions Coalition. (2005). Facts on the Family Health Care Decisions Act. Albany, NY: Author.
Health Advocacy Program. (2005). Results of literacy study reinforce need for the family health care decisions act. Bronxville, NY: Sarah Lawrence College.
New York State Task Force on Life and the Law. (1992). Surrogate Decisions for Incapacitated Patients. Albany, NY: New York State Department of Health.
For more information, contact Governmental Affairs at 518.782.9400, ext. 283 or by e-mail.