NEW YORK The law need not be a barrier to good decisions
at the end of life, Carl H. Coleman, JD, executive director of
the New York State Task Force on Life and the Law, said at a panel
discussion on legal issues and end of life care sponsored by the
Association of the Bar of the City of New York.
The primary issue is the patients decision-making capacity, ie,
the patients ability to understand the nature and consequences
of a particular decision, which is the ability to provide informed
consent. Dont assume the patient lacks capacity because
of a certain age or diagnosis, Mr. Coleman said.
Mr. Coleman noted that even if a patient lacks the capacity to make
medical decisions, he or she may still have the capacity to name a
health care proxy, designating a relative or friend to make health
If the patient is found to lack decision-making capacity, the usual
practice is to rely on family members to make decisions in accord
with the patients wishes. In New York State, clear and
convincing evidence of the patients wishes is required for life-sustaining
treatment to be withheld or withdrawn. Mr. Coleman said that
evidence of the patients wishes can be elicited by questioning
family members and friends as to whether they ever discussed end of
life issues with the patient.
He suggested that questions be asked as to the patients
reactions to events in the news or to the medical care received by
family or friends. A statement such as I never want that to be
done to me provides an indication of the patients wishes.
Living Wills, Health Care Proxies
Such roundabout methods to determine a patients wishes can be
avoided if the patient has left an advance directive. There are two
forms of advance directives, the living will and the health care
Mr. Coleman pointed out that a living will can be used to request
treatment as well as refuse treatment. If the patient wants unusually
aggressive resuscitation, for example, that should be clearly stated
in the living will.
A health care proxy is more comprehensive than a living will, as it
gives the patients agent the authority to make health care
decisions. Mr. Coleman said that a health care proxy is useful even
if the patient has a living will, as the living will may not cover
With a health care proxy, the patients agent is empowered to
make decisions about the patients medical care based on a good
faith judgment as to the patients wishes or best interests.
Health care providers must comply with the agents wishes or go
to court to try to override them.
The contents of a living will are important in the clinical
setting, so that the patients wishes can be respected,
said Connie Zuckerman, JD, associate director of the Center for
Ethics in Medicine, Beth Israel Medical Center, New York. However,
patients sometimes provide such detailed instructions that they
unintentionally complicate decision-making. Providing
inordinate detail to cover all possible contingencies is
counterproductive for clinical staff, Ms. Zuckerman said.
In many instances, an elderly person with chronic illness is first
seen in the emergency room, often in a crisis situation and often
with no advance directives. Each hospital has its own culture and its
own protocols for handling such a situation, Ms. Zuckerman said. Some
are more comfortable than others in meeting with families and
arriving at a consensus. She emphasized that the family should be
viewed as a resource, rather than as an adversary.
In the absence of written advance directives, it is not uncommon for
there to be confusion regarding the authority for termination of life
support. It is legal to withdraw life support if that is the
patients wish and if the family can provide evidence to
substantiate their belief that that is what the patient would
want, Ms. Zuckerman said. Although the patient may not have had
any written advance directives, the family can often provide
clear and convincing evidence of an oral advance
In nursing homes, too, advance directives are needed before crisis
situations develop. Too often, lack of advance directives leads
to increased medical costs, increased emotional distress for the
family, and a decreased quality of life, said Ruth E. West, RN,
BS, director of regulatory compliance and quality assurance, Greater
New York Health Care Facilities Association.
Federal regulations require all nursing homes to provide information
on advance directives at the time of admission. Ideally, residents
and families should be informed as to their rights and educated about
the issues and the ramifications of their decisions, Ms. West said.
She stressed that specific issues, such as the provision of
artificial nutrition and hydration, should be discussed.
If there are no advance directives and family members disagree
about treatment, Ms. West said, the individual who is
able to provide clear and convincing evidence as to the patients