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14 St. Thomas L. Rev. 5, *

Copyright (c) 2001 St. Thomas Law Review

St. Thomas Law Review

Fall, 2001

14 St. Thomas L. Rev. 5

LENGTH: 3963 words

LEGAL ETHICS IN MEDICINE: ADVANCE DIRECTIVES: TAKING CONTROL OF END-OF-LIFE

DECISIONS

Anita Cava*

* Associate Professor of Business Law, University of Miami School of Business

Administration, B.A. with Distinction, Swarthmore College, J.D., Hays Fellow,
New York University School of Law.

SUMMARY:
... An advance directive achieves this by being the voice of a person who can no
longer effectively speak, but who had definite desires about the manner of his
or her end-of-life care. ... A second physician, however, must evaluate the
patient "if the attending physician has a question as to whether the patient
lacks capacity ... ." When this occurs and a health care surrogate has been
appointed, the health care facility is then obligated to notify the surrogate in
writing. ... A health care surrogate is an important element of an effective
advance directive. ... What is now defined as a"persistent vegetative state"
used to be an example of a terminal condition, and was widely regarded as a
conceptual error. ... A significant element of the amended statute is that it
provides that an "end-stage condition" can trigger the advance directive and,
further, that it distinguishes a "persistent vegetative state" from the
"terminal condition" that Section 765 previously contemplated. ... Finally, the
Legislature set forth steps to address a significant issue in end-of-life
decision-making: the tension between the preferences expressed in an advance
directive or living will that should be honored in a health care facility and
the obligations of paramedics and rescue personnel. ...

TEXT:
[*5]

Advance directives are legally recognized instructions that offer competent

individuals a means by which to control a measure of their destiny. An advance
directive achieves this by being the voice of a person who can no longer
effectively speak, but who had definite desires about the manner of his or her
end-of-life care. By instructing others to withhold or withdraw unwanted medical
procedures, the principal makes a strong statement about who is in charge.

The end of life, however, is not solely an individual concern. The State of
Florida has voiced its interest in end-of-life decisions by way of statutory
amendments to Chapter 765. 1 This article examines the legal effect of advance
directives in light of the recent amendments and outlines how individuals can
best assure their end-of-life decisions are followed.

The benefits provided by advance directives have been highlighted in recent

years by decisions involving the public policy concerns that surround death and
dying. 2 Indeed, one might suggest that advance [*6] directives are no longer
solely the concern of the elderly. In fact, two seminal cases addressing the
termination of life support systems involved women in their twenties who slipped
into irreversible comas, the first apparently as a result of an overdose 3 and
the second because of a serious automobile accident. 4 Both families sought to
remove the life support systems to accomplish what they believed their daughters
would want. 5 Both families encountered serious opposition from the state and
ended up litigating for many years to effectuate what an advance directive could
have accomplished in less time. Hence, advance directives should arguably be of
concern to all adults.

An advance directive can be conceptualized in two ways: a proxy directive that

designates a surrogate to make health care decisions and an instructional
directive or living will in which preferences about medical care at the end of
life are included. 6

The State of Florida, however, established a combined approach that permits a

designated health care surrogate to make medical decisions guided by the
instructions of a living will if one exists. 7 Accordingly, an advance directive
is defined as "a witnessed written document or oral statement in which
instructions are given by a principal or in which the principal's desires are
expressed concerning any aspect of the principal's health care ... ." 8 While in
the past an advance directive included the designation of a health care
surrogate and/or living will, a significant change was made with this amendment:
an advance directive is now allowed to include "an anatomical gift made pursuant
to part X of chapter 732." 9

Advance directives represent a significant step in managing end-of- [*7] life

decisions. By completing an advance directive, a competent person can make clear
their desires so that others can effect her wishes when she is no longer able to
articulate them. A competent person can accomplish this goal by instructing her
physicians to withhold medical treatment or by designating a health care proxy
to make treatment decisions on her behalf if and when she becomes incompetent.
10 Note that a person who has never been competent to designate a health care
surrogate or execute a living will cannot trigger the procedures of this
statute. 11 A living will, as opposed to an advance directive, is a written,
witnessed document that states one's wishes regarding the withholding or
withdrawing of life sustaining treatment. Although a living will is not
necessary for the proxy to direct that unwanted medical treatment be avoided,
the document certainly assists the proxy in accomplishing that goal. 12

A. When does an advance directive become effective?

An advance directive becomes the voice of the patient when the patient can no
longer speak for herself. Accordingly, the initial issue is whether the patient
has lost the capacity to make important decisions. Only one medical opinion is
currently necessary to determine a patient's lack of capacity. 13 A second
physician, however, must evaluate the patient "if the attending physician has a
question as to whether the patient lacks capacity ... ." 14 When this occurs and
a health care surrogate has been appointed, the health care facility is then
obligated to notify the surrogate in writing. 15 Following this determination,
the surrogate's authority is valid until the patient is declared competent. 16
A health care surrogate is an important element of an effective advance
directive. The advance directive may set forth the personal desires of the
individual, but it stands to reason that appointing a legal representative to
enforce those wishes maximizes the chances that personal desires will be
honored. The surrogate is given specific rights and responsibilities under the
statute, including the specific right to authorize [*8] the "admission,
discharge, or transfer ... to or from a health care facility or other facility
or program licensed under chapter 400." 17 Note that a duly appointed surrogate
retains his or her role even if a court later appoints a guardian for the
individual. 18 Note, too, that many interested individuals are empowered to seek
expedited judicial review of the surrogate's decision under circumstances in
which the decision does not reflect the patient's known wishes, the advance
directive is "ambiguous" or the patient had changed his or her mind or regained
capacity. 19

Curiously, however, who effectuates the patient's desires is not nearly as

complicated as when such desires become effective. Deciding when to "provide,
withhold, or withdraw life-prolonging procedures" 20 in accordance with the
advance directive is fraught with legal and ethical conundrums. The amendment
added two definitions to aid in the judicial determination of a terminal
condition. What is now defined as a"persistent vegetative state" used to be an
example of a terminal condition, and was widely regarded as a conceptual error.
Also, the "end-stage condition" language represents an attempt to permit
individuals with no hope of recovery from undergoing unwanted intervention. Yet,
as with all legislation, this attempt to define the difficult will be tested in
health care facilities and in court, where the meaning of these phrases will
come to be fleshed out in the context of real fact patterns.

B. The New Definitions

The new definitions established by the amendment to chapter 765, which broadens
the analysis of when an advance directive may become effective, were not
accomplished without considerable debate. A cursory examination of the statute's
recent legislative history reveals that a significant policy disagreement
emerged during the hearings preceding the proposed amendment to Chapter 765. The
Panel for the Study of End-of-Life Care, created by the Florida Legislature and
made up of health care professionals, public officials, scholars and clergy, 21
voted 19-1 to delete the "terminal condition" language. 22 After holding
hearings over the course of a year, the panel concluded that the advance
directive of a very sick [*9] individual often is not given effect because the
condition is not understood to be "terminal." The lone dissenting panel member
was Jim Towey, Executive Director of Aging with Dignity, 23 whose position
apparently swayed the day as the debated language is still in the law. 24

A significant element of the amended statute is that it provides that an

"end-stage condition" can trigger the advance directive and, further, that it
distinguishes a "persistent vegetative state" from the "terminal condition" that
Section 765 previously contemplated. Appreciating exactly what these words mean
requires a degree of medical/legal sophistication. The statute sets out to draw
some parameters, but it is obvious that the devil is in the details.

An "end-stage condition" is defined as "a condition caused by injury, disease,

or illness which has resulted in severe and permanent deterioration, indicated
by incapacity and complete physical dependency, and for which, to a reasonable
medical certainty, treatment of the irreversible condition would be medically
ineffective." 25

A "persistent vegetative state" exists when there is "a permanent and

irreversible condition of unconsciousness in which there is: (a) The absence of
voluntary action or cognitive behavior of any kind; [and] (b) an inability to
communicate or interact purposefully with the environment." 26

A "terminal condition" is understood to be "a condition caused by injury,

disease or illness from which there is no reasonable medical probability of
recovery and which, without treatment, can be expected to cause death." 27

These definitions, while novel to the statute, are not revolutionary. In fact,
many have been incorporated from the Supreme Court of Florida's judicial
opinions. The Court in In re Browning v. Herbert, for example, set forth the
definition of a persistent vegetative state which was recently added to the
statute. 28 In that case, the patient, Mrs. Browning, had executed a document
stating she did not want life-prolonging measures if she had a terminal
condition and her doctor had determined there would be no recovery and death was
imminent. 29 Within a year, she suffered a stroke that left her totally
incapacitated. 30 The trial court, interpreting the statute, [*10] found that
death was not imminent because she "could continue to live for an indeterminate
time with artificial sustenance [even though] death would result within four to
nine days without it." 31

On appeal, while agreeing that the existing statute did not permit the
termination of treatment, the district court found a remedy under the privacy
guarantees of the Florida Constitution. 32 The Supreme Court affirmed, exploring
the right to privacy in an opinion that is mandatory reading for anyone dealing
with futility cases. Indeed, the privacy argument is an important arrow in the
quiver of end of life advocacy and is always available in Florida to overcome
resistance to difficult decision-making. For the purposes of this essay, suffice
it to say that Florida Statutes Chapter 785 as amended clearly applies to this
scenario and would permit the surrogate to effectuate the preferences of the
patient without having to make the constitutional argument.

However, the right to privacy only goes so far. When confronted with questions
about the right of competent but terminally ill patients to seek the assistance
of their physicians in ending their lives, both the United States Supreme Court
and the Supreme Court of Florida have rejected the privacy rationale. 33 These
decisions, like the ones mentioned above, have demonstrated the need for advance
directives.

C. Advance Directives: The Form and the Fury

When discussing advance directives and living wills, the first question often is
"Is there a form?" The answer is yes, there are several. The statute itself
offers sample forms that are very straightforward and drafted to convey a simple
message. 34 Other organizations, two of which bear mention, offer legally
effective forms. Aging with Dignity promulgates a form called the Five Wishes.
35 The other is offered by the Hemlock [*11] Society. 36

The Five Wishes form is noteworthy because it is very complete in that it offers
an excellent roadmap for the difficult conversation that is necessary for the
creation of a directive. For example, it explores the following preferences:
would the patient like soft music, a cool cloth on the head or someone to hold
his or her hand? However, while comprehensive, these preferences do not
necessarily impose any obligations on the health care facility and may serve to
complicate the matter. Five Wishes should be supplemented with the creation of
an advance directive which requires more than a simple statement regarding the
withdrawal or withholding of life support. The Hemlock Society form also needs
to be supplemented because it does not include the mental/physical
incapacitation clause.

Therefore forms, while helpful, should be considered in light of the statutory

provisions. This is especially important because the statute does not require
that advance directives be updated to conform to recent amendments. This is
complicated because for example, a feeding tube, which is now considered life
support treatment, was not before 1990. 37 So it is possible that the directive
may conflict with the current statutory provisions. As a result of this
potential conflict, some health care facilities choose not to honor a living
will that is more than two years old. 38 And, although section 765.1105 mandates
that a patient must be transferred from a facility that does not wish to comply
with the advance directive within seven days, this is an additional burden that
should be avoided. 39

D. Do Not Resuscitate Orders (DNROs)

Finally, the Legislature set forth steps to address a significant issue in

end-of-life decision-making: the tension between the preferences expressed in an
advance directive or living will that should be honored in a health care
facility and the obligations of paramedics and rescue personnel. 40 The [*12]
tension results from the fact that emergency rescue personnel do not recognize
an advance directive or living will. 41 They are only bound when presented with
a Do Not Resuscitate Order (DNRO), which is a medical order that must be signed
by a physician and properly witnessed. 42 Without a DNRO, bright yellow and
highly visible, paramedics must try to revive the patient. 43

In light of this, the Legislature amended various elements of the Florida

Statutes to permit personnel of hospital emergency services, long-term care
facilities, assisted living facilities, home health agencies, hospices and adult
family-care homes to withhold or withdraw medical treatment pursuant to a DNRO.
44 Specifically, the Department of Health was directed to develop a new form
that would replace existing "pre-hospital" DNROs. 45 Until such a form is made
available, however, a DNRO should be affixed to the patient's bed, their door or
the refrigerator to ensure that it is easily visible and available to emergency
rescue personnel.

E. Conclusion

In sum, the state-of-the-art in end-of-life decision-making has been advanced in

the state of Florida. While not perfect, the Legislature's efforts represents
another step forward in recognizing and implementing the right of competent
individuals to avoid unwanted medical treatment. There is no doubt that the
details of the success of this endeavor will be reported at a later date.

FOOTNOTES:
n1. The amendments to chapter 765 took effect on October 1, 1999. See Fla. Stat.
ch. 765.103 (1999). The statute notes that:

every competent adult has the fundamental right to self-determination regarding

decisions pertaining to his or her own health, including the right to choose or
refuse medical treatment. This right is subject to certain interests of society,
such as the protection of human life and the preservation of ethical standards
in the medical profession.
Id. at ch. 765.102(1) (1999). The statute also notes that:

in order to ensure that the rights and intentions of a person may be respected
even after he or she is no longer able to participate actively in decisions
concerning himself or herself, and to encourage communication among such
patient, his or her family, and his or her physician, the Legislature declares
that the laws of this state recognize the right of a competent adult to make an
advance directive instructing his or her physician to provide, withhold or
withdraw life-prolonging procedures, or to designate another to make the
treatment decision for him or her in the event that such person should become
incapacitated and unable to personally direct his or her medical care.

Id. at ch. 765.102(3) (1999).

n2. See Washington v. Glucksburg, 521 U.S. 702, 705-06 (1997) (no due process
right to physician assisted suicide); Vacco v. Quill, 521 U.S. 793, 797 (1997)
(no denial of equal protection when state statutes permit removal of life
support but deny physician assistance in otherwise ending life). Accord Krischer
v. McIver, 697 So. 2d 97, 104 (Fla. 1997) (no absolute right to assisted suicide
under privacy protections of Florida Constitution).

n3. Although the cause of the patient's unconsciousness and periodic cessations
of breathing were unknown, urine and blood tests revealed evidence of quinine,
aspirin, barbiturates, valium and librium. See In re Karen Quinlan, 348 A.2d
801, 806 (N.J. Super. Ct. 1975). See also In re Karen Quinlan, 355 A.2d 647
(N.J.) cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976).

n4. See Cruzan v. Director Missouri Dep't of Health, 497 U.S. 261, 265 (1990).

n5. See Cruzan at 265; Quinlan at 653.

n6. See Mark Tonelli, Pulling the Plug on Living Wills: A Critical Analysis of
Advanced Directives, 110 Am. College of Chest Physicians 816. A living will is a
written or oral witnessed statement that sets forth one's wishes regarding
withholding or withdrawing life sustaining treatment. While not necessary, the
living will is significant because it further solidifies the desires of the
principal.

n7. See Fla. Stat. ch. 765.101(1) (1999).

n8. Id.
n9. Id. The process is also facilitated by the fact that notarization is not
required. See Fla. Stat. ch. 765.302 (1999).

n10. See Fla. Stat. ch. 765.102(3).

n11. See id. at ch. 765.107(2).

n12. A copy of one's living will should be given to one's physician and to the
family and perhaps significant friends. In addition, one can use the services of
the Florida Registry of Living Wills, P.O. Box 316, Palatka, FL 32178
(1-800-624-5498).

n13. See Fla. Stat. ch. 765.204(2). This provision went into effect on October
1, 1999. See id. at ch. 765.103.

n14. Id. at ch. 765.204(2).

n15. See id.

n16. See id. at ch. 765.204(3).

n17. Fla. Stat. ch. 765.205(2).

n18. See id. at ch. 765.205(3).

n19. See id. at ch. 765.105.

n20. Fla. Stat. ch. 765.102(3).

n21. See 1998 Fla. Laws ch. 98-327, 3(2).

N22. See Diane C. Lade, Panel Discusses Giving Patients More Control Over Life's
End, Sun-Sentinel (Ft. Lauderdale, Fla.) Feb. 8, 1999, at 1B.

n23. See id.

n24. See Fla. Stat. ch. 765.302 (1999).

n25. Id.

n26. Id. at ch. 765.101(12).

n27. Id. at ch. 765.101(17).

n28. See In re Browning v. Herbert, 568 So. 2d 4, 9 (Fla. 1990).

n29. See id. at 8.

n30. See id.

n31. Id. at 9.

n32. See id.

n33. See Washington v. Glucksburg, 521 U.S. 702, 705-06 (1997) (holding no due
process right afforded to physician assisted suicide); Vacco v. Quill, 521 U.S.
793, 797 (1997) (determining the removal of life support permitted by statute
does not implicate an equal protection right to deny medical assistance);
Krischer v. Melver, 697 So. 2d 97, 104 (Fla. 1997) (asserting the creation of
the right to assisted suicide is a legislative not judicial mandate).

n34. See Fla. Stat. chs. 765.203, 765.303. The issue of choice of language is
significant, since a disagreement exists regarding how detailed an advance
directive or a living will should be. In other words, should instructions be
left vague, so that the proxy can work with the facts or does said vagueness
make it difficult to interpret the principal's wishes? See generally Living
Wills Help Make Wishes Clear to Caregivers, The Ledger (Lakeland, Fla.), Nov.
14, 1999, at A11.

n35. Choice in Dying's form contains language that states that the directive
takes effect only when the individual is "both mentally and physically
incapacitated." To obtain a copy contact Aging with Dignity at P.O. Box 1661,
Tallahassee, FL 32302.

n36. The Hemlock Society of Florida will provide a sample advance directive upon
receipt of a stamped self-addressed envelope at P.O. Box 39561, Ft. Lauderdale,
FL 3339-95661.

n37. See 1999 Fla. Laws ch. 99-331, 16(10).

n38. See Bebe Bahnsen, Workshop Focuses on Living Wills, Sarasota Herald-Tribune
(Fla.), Nov. 6, 1999, at 11B.

n39. See Fla. Stat. ch. 765.1105.

n40. A typical scenario is that of a patient who has a living will goes home to
die. When the patient is near death the home health aide calls 911. The family
is then unable to produce the directive upon the paramedics' arrival and resort
to drastic measures to prevent medical assistance. In one case the son of the
patient threatened the paramedics with a gun to prevent treatment of his mother.
The son was subsequently arrested for aggravated assault. See D. Pelletier,
Taking Control of Life's Last Season, The Stuart News (Fla.), Sept. 20, 1998, at
E1.

n41. See Fla. Stat. ch. 401.45(3)(a) (1999).

n42. See Fla. Admin. Code Ann. r. 64E-2.031 (2000).

n43. See Fla. Admin. Code Ann. r. 64E-2.031(b) (2000); Fla. Stat. ch. 401.45.

n44. See 1999 Fla. Laws ch. 99-331, 2(1), 3(3), 4(3), 5(7), 6(8), 7(3).
n45. See 1999 Fla. Laws ch. 99-331, 8(c).

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