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DEVELOPMENTS IN
THE LAW OF
HEALTH CARE
DECISION-MAKING
IN GENERAL
From both a legal and ethical perspective, any
discussion of health care decision-making must start with the right
of self-determination, i.e., the right of every individual, whether competent or incompetent, to make their own medical
treatment choices, including the right to refuse such treatment.
INDIVIDUAL’S RIGHT OF SELF-DETERMINATION
 | The right of self-determination in health care
matters is a fundamental human right that has long been recognized at common
law. The United States Supreme Court in Cruzan v. Director, Missouri
Department of Health has held that the right exists as part of the right of
privacy found within the constitutional guarantee of individual liberty.
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Informed Consent. From this right to be free
from unwanted bodily invasion developed the doctrine of informed consent which
states that, absent an emergency situation, no medical treatment may be imposed
without the individual’s informed consent.
| The right of self-determination can be exercised
at any time, so that the individual can refuse medical treatment initially or
can withdraw consent to such treatment after it has begun. |
| Right Does Not End with
Incapacity. Most importantly in the context of advance
directives, the right of self-determination, including the right to refuse
treatment, does not cease when the individual
becomes incapacitated.
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| Limitations on Right of Self-Determination.
The right of the individual to refuse medical
treatment is not absolute; it must be balanced against the legitimate interests
of the state in the general welfare of its citizens. The four state interests
that have been recognized by the Pennsylvania Supreme Court are:
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Preservation of life. The Court
called this the most significant state interest of the
four. It encompasses the separate, but related, concerns of preserving the life
of the particular individual and also safeguarding the sanctity of all life.
Protection of the ethical integrity of the medical
community.
Protection of third parties, primarily dependents of
the individual who would be left emotionally and financially bereft if the
individual refused medical treatment.
Prevention of suicide.
| Exercise of the Right of Self-Determination |
Competent Individual. While individuals are
still competent, they are entitled to make their own health and treatment decisions,
including even the choice to refuse food and/or water.
Incompetent Individual. If the individual is
incompetent, the law has attempted to allow for the meaningful exercise of the
individual's
right of self-determination through a surrogate who is to follow a three-stage process
described as follows:
First the surrogate is to look for
evidence of the individual’s expression of intent, prior to incapacity,
regarding health care treatment choices, including the withholding or withdrawal
of life-sustaining measures.
If there is insufficient evidence of such intent,
the surrogate should next use substituted judgment to make
decisions based on the evidence that is available of the individual’s
instructions, beliefs, preferences, and values that reflect their treatment
choices.
Thirdly, if there is not enough evidence to use
the substituted judgment standard, the surrogate should then make decisions
based on what the surrogate determines to be in the best interests of the
individual.
Incompetent Individual’s
Intent.
| For individuals who are incompetent, the standard
of proof for establishing evidence of their treatment choices differs among
the states. |
| Some states require that there be "clear and
convincing" evidence of the individual’s intent to withdraw life-sustaining
treatment. This is the strictest burden of proof. |
| Pennsylvania Standard. In In re Fiori, the Pennsylvania Supreme Court found
the clear and convincing evidence test to be overly restrictive, since it would
thwart the individual’s right to determine the medical care to be received if
they are in a persistent vegetative state. As discussed below, in
Pennsylvania the substituted judgment standard is used to determine the
individual's intent. |
SUBSTITUTED JUDGMENT
| The substituted judgment principle is intended to
ensure that the surrogate decision-maker effectuates as much as possible the
decision that the incompetent individual would have made if he or she were still
competent, rather than making such decisions arbitrarily or based on the
surrogate’s own attitudes and beliefs. |
| In exercising substituted judgment, the surrogate
is to consider the individual's personal value system, any prior statements
about or reactions to medical issues, including end-of-life issues, and all
the aspects of the individual's personality that the surrogate is familiar
with, to arrive at what course of medical treatment the individual would have
chosen. |
| In Fiori the Pennsylvania Supreme Court upheld
substituted judgment as the proper approach to take in cases where an
incompetent individual has not left instructions as to the maintenance of
life-sustaining treatment. The court recognized that the only practical way to
prevent the violation of the incapacitated individual's right to refuse medical
treatment is to allow a substitute decision-maker to determine what measures the
individual would have desired. |
| For the substituted judgment standard to be used
effectively, there must be sufficient credible evidence available to the
surrogate concerning the individual’s expressions of directions or preferences
regarding the types of medical procedures or health-care treatment that he
would or would not refuse in certain situations. |
BEST INTEREST STANDARD
| If there is not sufficient information regarding the
individual’s expressed directions or preferences, the surrogate may then employ
the best interests standard, i.e., choosing the proposed treatment or medical
procedure that is in the best interests of the individual. |
| The Pennsylvania Supreme Court in Fiori
defined the best interests standard by citing a 1983 President's Commission
Report that the analysis of the individual’s "best interest" is an objective
standard that considers the individual’s relief from suffering, the preservation
or restoration of functioning, and the quality and extent of sustained life.
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STATUTORY ENACTMENTS
FOLLOWING CRUZAN
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Impact of Cruzan. The
constitutional issues underlying the right of the individual, even if
incompetent, to refuse treatment reached the United States Supreme Court in
Cruzan v. Director, Missouri Department of Health, supra. The Supreme
Court there recognized that a competent individual has a constitutional liberty
right to be free of unwanted medical treatment. However, the Court left to the
states the regulation of this right on behalf of incompetent patients. As
Justice O'Connor noted in her concurrence: |
"Today we decide only that one of the state's
practice [requiring clear and convincing evidence of a desire to have food
and water withdrawn] does not violate the Constitution; the more challenging
task of crafting appropriate procedures for safeguarding incompetents'
liberty interests is entrusted to the 'laboratory' of the States . . . in
the first instance."
| The Cruzan decision in 1990 proved to be a
watershed event, in that its effect was to encourage states to enact legislation
that would allow individuals to exercise their right to refuse medical treatment
in case they would be later unable to communicate such intentions directly, and
to appoint surrogates to ensure that their directives would be carried out. As
contemplated by Justice O’Connor, the state legislative "laboratories" became
increasingly active. Today, all states have some form of statutory framework
that allows individuals to plan for their medical treatment in the event they
later become incompetent. |
| The three statutory solutions that have emerged from
states’ efforts to protect the rights of incompetent individuals are: |
Living will laws that allow individuals to
exercise their right of self-determination by specifying in writing their wishes
about the use of artificial life-sustaining treatment in the event they become
incompetent.
Health care durable power of attorney
statutes that allow individuals to appoint another person to make decisions
about health care matters for them if they become incompetent
Surrogate/family decision-making
laws that authorize certain family members or other persons to make
decisions on behalf of an incompetent individual who has not executed a
living will or health care power of attorney.
Statutory History of Health Care Matters in
Pennsylvania
| Living Wills. In the aftermath of Cruzan
Pennsylvania enacted its own living will statute, known as the Advance
Directive for Health Care Act ("ADHCA"). It allowed an adult
individual of sound mind to state in writing his or her wishes regarding
end-of-life care and to refuse life-sustaining treatment. |
| In practice, the ADHCA was found to have several
limitations. |
It was of limited scope, since it covered only
individuals who were first determined to be in a "terminal condition" or
"permanently unconscious."
It did not specify the powers of the surrogate
decision-maker, if one was appointed in the living will.
| Health Care Power of Attorney. Prior to Act
169 Pennsylvania had limited provisions for an agent to make health care
decisions for a principal. They are contained within Chapter 56 of the PEF
Code, which deals primarily with powers of attorney for financial and property
matters. The scope of the agent’s powers in Chapter 56 is limited to anatomical gifts
and such routine matters as authorizing admission to a medical, nursing,
residential or similar facility, entering into agreements for health care, and
authorizing "medical and surgical procedures." These powers, however, do not
extend to the right to refuse treatment on behalf of the principal.
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| Health Care Surrogate. Most importantly,
neither the ADHCA nor Chapter 56 addressed the issue of decision-making for
those individuals – undoubtedly the majority of the adult population – who have
no living will or health care power of attorney. |
Prior to Act 169 the only recourse for such persons
was for an interested party to pursue the relatively time-consuming and
expensive procedure of petitioning the court to declare the individual to be an
incapacitated person and to appoint a guardian of the person who could make such
health care decisions.
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DISCLAIMER
Martin J. Hagan is licensed to practice law in the
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Copyright © 2008 Martin J. Hagan, One Gateway Center - 8 South; Pittsburgh, PA 15222-1435
Last Updated:
05/28/08
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