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5/4/01
NEW YORK STATE BAR ASSOCIATION
REPORT BY THE
HEALTH LAW SECTION
Recommendations on the Family Health Care Decisions Act (A.5523)
The Health Law Section recommends that the Family Health Care Decisions Act (the "Act")
should be amended to simplify the legislation and address several key issues that have
proven contentious in public consideration for the bill. Specific recommendations for
amendments are set forth below. The Health Law Section has proposed these changes in the
hope of renewing public deliberation and action on the bill. The Family Health Care
Decisions Act remains critically important to patients, their families, and health care
providers in New York State. A copy of the bill as introduced in the
Assembly this year
(A.5523) marked to show the proposed changes is available on
this website.
The
Health Law Section urges passage of the amended bill during this legislative session.
The Need for Legislation
The Family Health Care Decisions Act is urgently needed to protect the wishes and best
interests of patients in New York State. Under current law, no one, not even a concerned
family member, has the right to decide to forgo life-sustaining measures for patients who
lack decision-making capacity, unless the patient has signed a health care proxy or left
"clear and convincing evidence" of his or her treatment wishes. Most people never sign a
proxy of leave this kind of evidence. As a result, incapacitated patients are routinely at
risk of receiving burdensome treatments that violate their wishes, values, or religious
beliefs. By giving family members and others close to the patient the right to decide
about medical treatment for patients who lack capacity, the Family Health Care Decisions
Act would bring New York law in line with the law in the vast majority of other states.
The Act contains important safeguards to ensure that decisions promote the wishes and best
interests of incapacitated patients.
The Act would also remove legal barriers to needed treatment for patients who are too ill
to decide for themselves and have no family members or others close to them to decide on
their behalf. Under existing law, decisions to provide needed treatment for patients who
have no surrogate must be made by a court-appointed guardian or approved by judge. The
Family Health Care Decisions Act establishes a process for health care providers to
authorize needed treatment, in accord with the known wishes, if any, or the best interests
of patients who have not family members or others to consent on their behalf.
Recommended Changes
The Family Health Care Decisions Act was proposed by the New York State Task
Force on Life and the Law in 1992. The Act has the support of over 40 consumer,
religious, professional, and civic organizations in New York State, many of whom
testified in support of the Act in public hearings held by the Legislature in
1993 and 1996. Despite this exceptionally broad support, the Act has not been
passed due to continuing controversy regarding certain provisions and concerns
that the bill is too complex and many be difficult to implement. The proposed
amendments simplify procedures in the bill in key sections and address issues
that have been the subject of continuing public discussion. Specific
recommendations for changes to the Act are set forth in marked up bill.
Decisions about life-sustaining treatment for patients without
surrogates; role of ethics review committees
As currently drafted, the Act would give "ethics review committees" in hospitals
and long-term care facilities the authority to review and approve physicians'
recommendations to withhold or withdraw life-sustaining treatment for
incapacitated patients with no family members or friend to decide on their
behalf. After careful consideration, the Health Law Section concluded that the
facility-based decision-making process set forth in the Act should be
eliminated. Instead, courts should authorized to approve decisions to forgo
life-sustaining treatment for patients without surrogates in accord with the
standards set forth in the Act.
The central premise of the Act is that relying on decisions by family members
and others close to the patient is the best way to protect the wishes and best
interests of patients too ill to decide about life-sustaining treatment for
themselves. Since the Act was first proposed in 1992, patient advocates and
others have expressed concern that facility-based committees cannot adequately
protect isolated patients with no one to advocate on their behalf. The Task
Force on Life and the Law recognized the vulnerability of this patient
population and devised extensive procedural protections for review by ethics
committees. The number and complexity of these provisions increased during the
process of public comment and revision. In fact, much of the complexity and
administrative burden in the Act arises from the grand of authority to ethics
review committees to decide about life-sustaining treatment for patients without
surrogate. Removing the authority accorded facility-based committees for this
vulnerable population and referring those decisions to the courts would simplify
and strengthen the legislation.
Judicial review and authorization for decisions to forgo life-sustaining
treatment for patients without surrogates would constitute a significant advance
for these patients over existing law. Under the amendments, courts would be
authorized to approve the withholding or withdrawal of life-sustaining treatment
for patients without surrogates in accord with the standards set forth in the
Act. By contrast, under existing law, not even a court can decide to withhold
or withdraw life-sustaining treatment for an incapacitated patient in the
absence of clear and convincing evidence of the patient's wishes, even when the
treatment is clearly inconsistent with the patient's best interests. Because
the wishes of patients who have no family members or friends are rarely known
with such specificity, existing law makes it virtually impossible for courts to
make appropriate decisions about the use of life-sustaining treatments for these
patients.
Decision-making standard
In the current version of the Act, the decision-making standard for decisions to
withhold or withdraw life-sustaining requires that decisions be made on an
individualized basis for patients, and further requires the surrogate to
consider the patient's preferences, values and personal circumstances.
Inclusion of this language only for decisions about life-sustaining treatment
suggests that the standard is somehow unique to this set of decisions. In fact,
these requirements should apply to all decisions; decisions about other medical
treatment ranging from organ transplantation to elective surgical procedures
should also be made in accord with these requirements. The amendments proposed
by the Health Law Section therefore incorporate this language into the general
decision-making standard.
In addition, decisions for patient who are pregnant have been the subject of
extensive public discussion. The Health Law Section recommends the addition of
language that expressly requires consideration of the impact of treatment
decisions on the course and outcome of the patient's pregnancy. The Section
believes that this language reflects a consensus shared by New Yorkers who hold
a diversity of perspectives and beliefs.
Record-keeping requirements
The Health Law Section recommends the elimination of several provision that
mandate specific record-keeping for decisions made persuant to the Act. The Act
contains a general provision requiring health care facilities to develop
policies to document clinical determinations and decisions by surrogates in
accord with accepted medical standards. (See the Act, Section 2995-k)
Implementation of this requirement best addressed in institutional policies, not
in legislation.
Other provisions
The Health Law Section recommends eliminating confusing language that specifies
that health care providers are not obligated under the Act to offer or provide a
treatment to a surrogate that they would have no obligation to offer or provide
to a competent adult. This provision was designed to address the issue of
medically futile treatment, but is redundant of the underlying premise of the
Act that surrogates would have the same authority as competent adults to make
decisions, subject to the standards and limitations set forth in the Act.
The Section proposes that the bill be amended to require health care providers
to notify surrogates before relying on a prior decision made by the patient
before the loss of decision-making capacity. Because the meaning of the prior
decision may be ambiguous, and the applicability of the decision to the current
situation may be unclear, those interpreting previous decisions by incapacitated
patients should involve the patient's surrogate whenever possible.
The Health Law Section recommends the deletion of language requiring
notification of "persons acting as surrogates" when a person higher on the
priority list becomes available. the requirement is neither necessary nor
likely to have any practical effect. Finally, the Health Law Section recommends
deletion of unnecessary language in the section of the Act governing the
determination of incapacity.
The Recommendations set forth in this memorandum were developed initially by the
Section's Special Committee on Treatment Decisions and endorsed by the Executive
Committee of the Health Law Section. The members of the Special Committee on
Treatment Decisions are as follows:
Special Committee on Treatment Decisions
Carl Coleman, Chairperson
Arthur Levin
Kathryn Meyer
Tracy Miller
Barbara Shack
For more information, E-mail Family Decision Coalition
For questions about website, E-mail Jack Freer
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