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519

CHAPTER 19

Health Decisions and Directives

about the End of Life

JAY WOLFSON and REBECCA MORGAN

EACE OF MIND

is something most people hope to achieve during the end of

their life. Most people, if asked, would probably say that they would prefer

to die peacefully, without pain, and with minimal economic and emotional

trauma for their loved ones. Despite this obvious, nearly universal intent, the cer-

tainty of death is often masked in our society by a Peter Pan-ish belief that we

will live forever anchored in a fundamental loathing of the prospect of death. As

a consequence, planning for end-of-life-related events is often avoided or engaged

without sufficient forethought and detail. It is natural for people to avoid plan-

ning for things they don’t want to deal with. Yet the consequences can be disap-

pointing if not difficult or even tragic for family members and friends left behind.

A panoply of economic and political factors has raised end-of-life planning to a

level of personal, family, and social imperative. These include the costs associated

with the long-term provision of skilled or life-sustaining health care services and

the effects of a failure to clearly designate one’s intentions regarding how end-of-

life decisions should be made, or who should make them in the event of incompe-

tence. The worst-case scenario is the years of legal struggle in the Theresa Schiavo

case between the 1990s and 2004, during which her parents fought against their

son-in-law over the right to determine the health care fate of a severely brain

damaged woman.

The “age wave”—the largest single cohort in history—is making its way toward

retirement, through early bouts with the “standard” chronic illnesses of diabetes,

hypertension, cardiovascular disease, and certain cancers. This population is fac-

ing the challenge of living longer than their parents and grandparents and expe-

riencing a broader array of illnesses and diseases, including neurological

disintegration, bone structure weakening, organ system failure and dysfunction,

and even HIV/AIDS, as sexual activity stimulated by Viagra becomes a possibil-

ity rarely before enjoyed.

In this chapter, we discuss the modern history of end-of-life health-related

planning and decisions, often categorized as the “right to die.” We review specific

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Precedent is defined as “the making of law by a court in recognizing and applying new rules

while administering justice...a decided case that furnishes a basis for determining later cases in-

volving similar facts or issues....In law a precedent is an adjudged case or decision of a court of

justice, considered as furnishing a rule or authority for the determination of an identical or similar

case afterwards arising, or of a similar question of law.” Black’s Law Dictionary (2004). See also stare

decisis: “the doctrine of precedent, under which it is necessary for a court to follow earlier judicial

decisions when the same points arise again in litigation....The rule of adherence to judicial

precedents finds its expression in the doctrine of stare decisis. This doctrine is simply that, when a

point or principle of law has been once officially decided or settled by the ruling of a competent

court in a case in which it is directly and necessarily involved, it will no longer be considered as

open to examination or to a new ruling by the same tribunal, or by those which are bound to follow

its adjudications, unless it be for urgent reasons and in exceptional cases.” Id.

Doctrine of informed consent from Black’s Law Dictionary (2004): “a person’s agreement to allow

something to happen, made with full knowledge of the risks involved and the alternatives...a

patient’s knowing choice about a medical treatment or procedure, made after a physician or other

health care provider discloses whatever information a reasonably prudent provider in the medical

community would give to a patient regarding the risks involved in the proposed treatment or pro-

cedure.”

141 U.S. 250 (May 25, 1891).

Botsford at 251.

Id.

options that people and their families should consider when they plan end-of-life

decisions. The purpose of planning end-of-life health-related decisions is to en-

sure that the express intentions of individuals are honored regarding the kind of

health care services they wish to receive, how they die, when they die, where they

die, and who has authority to make decisions about them. Included in this discus-

sion are options regarding postdeath matters, such as burial versus cremation, au-

topsies, and donation of bodies or body parts.

HISTORY

OCTRINE OF

NFORMED

ONSENT

The law is built on the concept of precedent;

that is, the law wants to decide like

cases alike, and thus will look back at prior decisions to determine how to resolve

current issues. But in the category of cases popularly named the “right to die,”

which did not come into existence until the late 1970s, how could the law look

back at prior decisions? The courts looked at the doctrine of informed consent.

As early as 1891 the U.S. Supreme Court in the case of Union Pacific Railway v.

Botsford

discussed the issue of bodily integrity. Although concerned with what

today would be termed a “personal injury” suit, the case is instructive in the seri-

ousness with which bodily integrity is treated. The only issue before the Court

was the power of the court to order a plaintiff to submit to a surgical examination

for the purpose of determining the extent of the injuries for which the plaintiff

had sued.

The Court held that “no right is held more sacred, or is more carefully

guarded by the common law, than the right of every individual to the possession

and control of his own person, free from all restraint or interference of others, un-

less by clear and unquestionable authority of law.”

That is, quoting Judge Cooley,

“The right to one’s person may be said to be a right of complete immunity; to be

Health Decisions and Directives about the End of Life 521

Id., quoting Cooley, Torts, 29.

211 N.Y. 125 (N.Y. Ct. App. 1914).

Id. at 129–130, citing to Pratt v. Davis, 224 Ill. 300 (year) and Mohr v. Williams, 95 Minn. 261 (1905).

See, for example, Shine v. Vega, 709 N.E.2d 58 (Mass. 1999), n. 15 citing to Prosser & Keaton on

Torts: “(a) the patient must be unconscious or without capacity to make a decision, while no one

legally authorized to act as agent for the patient is available; (b) time must be of the essence, in the

sense that it must reasonably appear that delay until such time as an effective consent could be ob-

tained would subject the patient to a risk of a serious bodily injury or death which prompt action

would avoid; and (c) under the circumstances, a reasonable person would consent, and the proba-

bilities are that the patient would consent.” W.L. Prosser & W.P. Keeton, Torts §18, at 117 (5th ed.,

1984).

497 U.S. 261 (1990).

Id. at 269.

Id.

Id. at 271.

let alone.”

Some years later, a New York Appellate Court followed up on the idea

of bodily integrity in Schloendorff v. the Society of New York Hospital,

where the

plaintiff sued the hospital and others for allegedly performing surgery without

her consent and for subsequently ensuing complications. The doctrine of in-

formed consent can be seen clearly in the court’s opinion; the court, citing to two

earlier decisions, noted,

Every human being of adult years and sound mind has a right to determine what

shall be done with his own body; and a surgeon who performs an operation with-

out his patient’s consent, commits an assault....This is true except in case of emer-

gency where the patient is unconscious and where it is necessary to operate before

consent can be obtained.

This idea of bodily integrity, then, stands for the proposition of informed con-

sent: that one has control over one’s body and a touching without one’s consent is

an assault.

An exception to the doctrine of informed consent falls in the category of an

emergency, referenced in the Schloendorff case. In the emergency exception, if the

elements of the exception are met, then medical professionals can provide health

care to the patient without his or her consent. Roughly described: The patient is

in an emergency medical condition and as a result is unable to provide consent;

time is of the essence, and no one (family or someone with authority to provide

consent) is available or willing to provide consent.

How does one jump from informed consent to medical procedures to applying

the doctrine of informed consent to end-of-life cases? The U.S. Supreme Court an-

swered that question in the case of Cruzan v. Director, Missouri Department of

Health.

Reviewing Botsford and Schloendorff, the Court noted that bodily in-

tegrity is an integral component of informed consent.

Implied in the right to

consent, the Court reasoned, “is the right not to consent, that is, [the right] to re-

fuse treatment.”

In many of the decisions involving the right to die, the courts

based the right on the doctrine of informed consent or informed consent and the

constitutional right of privacy.

Informed consent, then, is generally viewed as

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Id. at 277.

70 N.J. 10 (1976).

Id. at 23–25.

The claims included free exercise of religion, cruel and unusual punishment, and the right of pri-

vacy. Id. at 35–40.

Id. at 38–42.

The court actually describes these as “preservation and sanctity of human life and defense of the

right of the physician to administer medical treatment according to his best judgment.” Id. at 40.

Over time, the state interests have been described as preservation of life and protection of ethical

integrity of the medical profession.

Id. at 41.

Id. at 41–42.

In this case, it would be her family and guardian. Id. at 41.

Id. at 48–52, 54–55.

including the right for a competent patient to refuse medical treatment,

which

necessarily includes life-prolonging procedures.

IGHT TO

The issue of removal of life-prolonging procedures from a patient is relatively new,

having come to the fore in 1976 in the case, In re Quinlan.

The facts of the case

bear review: Karen Ann Quinlan, at age 21, for reasons unknown, stopped breath-

ing for two 15-minute periods. Subsequently diagnosed as being in a persistent

vegetative state, she was on a respirator and had a feeding tube.

Her father

sought to have the respirator removed, positing a number of claims that would jus-

tify the removal of the respirator.

The Court’s focus was on the constitutional

right of privacy as a basis for the removal of the respirator.

The Court identified

the applicable state interests as preservation of life and protection of the ethical in-

tegrity of the medical profession.

Because the Court was examining a constitu-

tional right of privacy as the basis for the right to remove life-prolonging

procedures, a certain analysis was required. Noting the amount of bodily invasion

and the prognosis for Ms. Quinlan, the Court determined, “We think that the

State’s interest Contra weakens and the individual’s right to privacy grows as the

degree of bodily invasion increases and the prognosis dims. Ultimately there

comes a point at which the individual’s rights overcome the State interest.”

Be-

cause Ms. Quinlan was incompetent at the time of the decision, the Court had to

address the issue of whether the right was lost by virtue of her incompetency.

The Court determined that the right was not lost by virtue of incompetency; in-

stead, it would simply be exercised for the patient by another.

The final question

for the Court was whether a decision of this type could be made outside of the

court system.

The Court identified a framework for resolution that involved the

family, health care providers, and a consultative body:

Upon the concurrence of the guardian and family of Karen, should the responsible

attending physicians conclude that there is no reasonable possibility of Karen’s ever

emerging from her present comatose condition to a cognitive, sapient state and that

the life-support apparatus now being administered to Karen should be discontin-

ued, they shall consult with the hospital Ethics Committee or like body of the insti-

tution in which Karen is then hospitalized. If that consultative body agrees that

Health Decisions and Directives about the End of Life 523

Id. at 54.

370 N.E.2d 417 (Mass. 1977).

370 N.E.2d 417, 420 (Mass. 1977).

Id. at 417–423.

Saikewicz at 424–428. These state interests are fact-specific. They are not an exclusive or exhaus-

tive list, and in fact there may be other state interests that apply, depending on the facts of the case

in question. For example, in the case of Washington v. Glucksberg, 521 U.S. 702 (1997), the court iden-

tified more state interests applicable to the question of legalizing physician-assisted suicide. As

noted by the Florida Supreme Court in Public Health Trust v. Wons, “The state interests...are by no

means a bright-line test, capable of resolving every dispute regarding the refusal of medical treat-

ment. Rather, they are intended merely as factors to be considered while reaching the difficult de-

cision of when a compelling state interest may override the basic constitutional right[ ] of privacy”

(541 So.2d 96, 97, n. 13 (Fla. 1989)).

Saikewicz at 750–753.

568 So.2d 4 (Fla. 1990).

Id. at 8.

Id.

Id. at 8–9.

there is no reasonable possibility of Karen’s ever emerging from her present coma-

tose condition to a cognitive, sapient state, the present life-support system may be

withdrawn and said action shall be without any civil or criminal liability therefor

on the part of any participant, whether guardian, physician, hospital or others.

The following year, the Massachusetts Supreme Court further clarified the

process for handling end-of-life cases in In re Saikewicz.

Mr. Saikewicz was pro-

foundly mentally retarded, with an “IQ of ten and a mental age of approximately

2 years and 8 months,”

meaning that in the eyes of the law, he was never compe-

tent to make a legally binding decision. Mr. Saikewicz was stricken with

leukemia, and the court was faced with the question of whether he should un-

dergo chemotherapy.

On appeal the court further refined the Quinlan analysis

by expanding the applicable state interests to four: preservation of life, preven-

tion of suicide, protection of innocent third parties, and protection of the ethical

integrity of the medical profession.

The court echoed the Quinlan court, that

the interest is not lost by virtue of the patient’s incompetency, and determined

that the substituted judgment doctrine would be used to make the decision that

the patient would make.

Under the substituted judgment doctrine, the decision

maker would make the decision the patient would make, if the patient could for a

moment come back to consciousness, be apprised of the diagnosis, prognosis, and

treatment options, and then make the decision. In other words, the decision

maker stands in the patient’s shoes and makes the decision the patient would

make if capable of doing so.

In 1990, some months after the U.S. Supreme Court issued its opinion in

Cruzan, the Florida Supreme Court issued its opinion in In re Browning.

Unlike

most cases involving removal of life support, Estelle Browning was elderly and

had actually made not one, but two living wills.

After the patient suffered a

massive stroke, a gastrostomy tube and, subsequently, a nasogastric tube were in-

serted.

Her guardian sought removal of the nasogastric tube.

The trial court,

after examining the wording of her living will and the statute applicable at the

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Id. at 9.

Id.

Id. at 9–10.

Browning at 10, quoting In re T.W., 551 So.2d at 1192; and referencing Public Health Trust v. Wons,

541 So.2d 96 (Fla. 1989).

Browning at 11–12. “We conclude that a competent person has the constitutional right to choose

or refuse medical treatment, and that right extends to all relevant decisions concerning one’s

health....Courts overwhelmingly have held that a person may refuse or remove artificial life-

support, whether supplying oxygen by a mechanical respirator...or supplying food and water

through a feeding tube....We agree and find no significant legal distinction between these arti-

ficial means of life-support” (citations omitted), and n.6: “We see no reason to qualify that right

on the basis of the denomination of a medical procedure as major or minor, ordinary or extraordi-

nary, life-prolonging, life-maintaining, life-sustaining, or otherwise” (citations omitted).

Id. at 13.

Id. at 15–17.

time, determined that the feeding tube could not be removed.

The statutory re-

quirement (death is imminent) had not been met, because death would occur be-

tween 4 and 9 days after removal of the tube, and that was not considered

imminent.

On appeal, although the Florida Supreme Court agreed that the

Florida statute was not applicable to the case, the court determined that the state

constitutional right of privacy (Article I, section 23) was the source of the right to

refuse life-prolonging procedures.

The Florida Supreme Court began its analy-

sis by referring back to the concept of autonomy, “begin[ning] with the premise

that everyone has a fundamental right to the sole control of his or her person,”

and noting that the main element to self-determination

is the right to make choices pertaining to one’s health, including the right to refuse

unwanted medical treatment. “We can conceive of few more personal or private de-

cisions concerning one’s body that one can make in the course of a lifetime . . .

[than] the decision of the terminally ill in their choice of whether to discontinue

necessary medical treatment.”

Unlike previous court opinions, the Browning court chose to not make any distinc-

tions between the types of treatment or the patient’s condition, instead finding

that the right covers all medical choices.

Because Florida is a “substituted judg-

ment state,” the court addressed the application of substituted judgment, noting

that although the doctrine is not without flaws,

unfortunately, human limitations preclude absolute knowledge of the wishes of

someone in [such]...condition. However, we cannot avoid making a decision in

these circumstances, for even the failure to act constitutes a choice. That choice

must be the patient’s choice whenever possible. The right of privacy requires that

we must safeguard an individual’s right to chart his or her own medical course in

the event of later incapacity.

After discussing the “four state interests,” the court then created a framework

for decision making in end-of-life cases and set out what types of challenges

would be appropriate.

The Florida Supreme Court opinion is significant,

not so much for the decision-making process set out in the opinion, but because

Health Decisions and Directives about the End of Life 525

Id. at 9–12.

The closest to an enforcement mechanism might be a section that requires a health care provider

to transfer the patient to a provider who will honor the patient’s wishes if the health care provider

(usually for conscientious objection reasons) refused to honor the patient’s directive.

70 NJ 10, 38–42.

497 U.S. 261 (1990).

the court found the state constitutional right of privacy as a basis of the right

to make health care decisions, including the right to remove life-prolonging

procedures.

BASIS OF RIGHT

As discussed earlier, the basis of the right to remove life-prolonging procedures

has been found by many courts to be that of informed consent. However, as also

noted, there are other bases of the right, including state statutes, state constitu-

tions, and federal constitutions.

It is misleading, however, to categorize the state statutes as providing a basis

for the right to remove life-prolonging procedures. All 50 states and the District

of Columbia have statutes that allow adults to make some kind of advance direc-

tive (see later discussion). The focus of these statutes is narrow and can be sum-

marized as follows: the creation of the directive, triggers for when a directive

would become effective, and limitations of liability (professional, civil, and crim-

inal) for those honoring the directives in good faith. What are generally missing

from these statutes, when viewed from the patient’s perspective, are enforcement

mechanisms to have the directives honored.

A few states besides Florida have state constitutional rights of privacy that are

the source of the right to remove life-prolonging procedures. These provisions are

important from the patient’s perspective, because they provide a greater protec-

tion for the patient to have his or her wishes honored.

As noted initially in Quinlan, the federal Constitution provides the basis for

the right.

Although the early decisions by state courts assumed that the federal

constitutional right was based in privacy under the 14th Amendment, as the

Cruzan Court determined, it is based in liberty.

Most frequently, however, the

right is based on the doctrine of informed consent. If the doctrine of informed

consent requires consent (absent an emergency) to treatment, then it stands to

reason that implied in the right to consent is the right to not consent, that is, to be

silent, and the right to refuse. Thus a patient can take positive action (consent to

treatment), remain neutral (neither consent nor refuse—just not decide), or take

negative action (refuse treatment or direct the withholding or withdrawing of

life-prolonging procedures).

OW THE

IGHT

XERCISED

As important as the basis of the right is, if not more so, is how the right is exer-

cised. To understand the actual application of the right to a specific patient, one

must first determine the condition or category of the patient vis-à-vis making a