U.S.

Department of Health and Human Services

Assistant Secretary for Planning and Evaluation
Office of Disability, Aging and Long-Term Care Policy

ADVANCE DIRECTIVES AND

ADVANCE CARE PLANNING:

LEGAL AND POLICY ISSUES

October 2007
 Office of the Assistant Secretary for Planning and Evaluation
The Office of the Assistant Secretary for Planning and Evaluation (ASPE) is the
principal advisor to the Secretary of the Department of Health and Human Services
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Office of Disability, Aging and Long-Term Care Policy

The Office of Disability, Aging and Long-Term Care Policy (DALTCP), within ASPE, is
responsible for the development, coordination, analysis, research and evaluation of
HHS policies and programs which support the independence, health and long-term care
of persons with disabilities--children, working aging adults, and older persons. DALTCP
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ASPE/DALTCP and the RAND Corporation. For additional information about this
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 ADVANCE DIRECTIVES AND
ADVANCE CARE PLANNING:
Legal and Policy Issues

Charles P. Sabatino, J.D.

American Bar Association

Commission on Law and Aging

October 2007

Prepared for
Office of Disability, Aging and Long-Term Care Policy
Office of the Assistant Secretary for Planning and Evaluation
U.S. Department of Health and Human Services
Contract #HHS-100-03-0023

The opinions and views expressed in this report are those of the author. They do not necessarily reflect
the views of the Department of Health and Human Services, the contractor or any other funding
organization.
 TABLE OF CONTENTS

I. INTRODUCTION..................................................................................................... 1

II. COMMON LAW AND CONSTITIONAL UNDERPINNINGS................................... 4

III. THE STATUTORY EVOLUTION OF ADVANCE DIRECTIVES ............................. 7

IV. THE PARADIGM SHIFT IN STATE LAW............................................................. 15

The Legal Transactional Approach .................................................................. 15
The Communications Approach....................................................................... 20

V. A POSSIBLE NEXT STEP -- THE POLST PARADIGM....................................... 26

VI. DEFAULT SURROGATES: THE PREVAILING REALITY................................... 28

VII. THE FEDERAL ROLE .......................................................................................... 33

i
 I. INTRODUCTION

Since the mid-1970s, health care advance directives have become the central
legal tool to make sure one’s health care wishes are known in a formal way and, it is
hoped, followed. However, whether advance directives laws can achieve that goal is
still very much an open question. This paper provides an overview of the evolving legal
landscape of end-of-life decision making generally, and advance directives specifically,
and identifies current challenges and opportunities for promoting the goals of advance
care planning.

A good starting point in understanding this landscape is a realization that law and
regulation are but one slice of the universe of variables that profoundly affect the
experience of dying in America. As illustrated in the pie chart below, other key variables
include institutional innovation, the role of financing systems, professional and public
education, and professional standards and guidelines. All these operate in a larger
framework that is defined by family, workplace, community life and spirituality. Thus,
the isolation of law and regulation as a strategy for behavior change requires a sense of
humility in establishing expectations, lest we overstate the influence of law in the human
experience of dying. At the same time, although it is but one piece, it is perceived as a
very powerful variable in the big picture.

FIGURE 1. Factors Influencing End-of-Life Care

State statutory law stands out as the predominant feature of the legal landscape
addressing the use and recognition of advance directives and surrogate decision
making in general. Though predominant, these laws neither create substantive rights
nor constitute the exclusive legal authority defining our decision making rights and
responsibilities. The common law, as well as state and federal constitutional law,
professional standards, and even custom and practice provide the underpinnings of the
statutory law and provide the foundation for advance directive policy. Sometimes,
statutory advance directive laws are perceived as the exclusive legal pathway for
ensuring one’s wishes are known and respected. The perception may arise partly
because of the visibility and perceived authority that official legal forms carry, but also

1
because of the tendency of legal advisers to counsel conservatively (i.e., the only “safe”
approach to use is the statutory form). The reality is that most end-of-life decisions take
place through doctor-patient-family interactions without the involvement of these legal
advance care planning tools, and most state advance directive laws assert explicitly that
they do not pre-empt or change any existing rights regarding health care decision
making authority or responsibility. Specifically, 33 states with living will, durable power
of attorney for health care, or combined statutes expressly include non-pre-emption
language, similar to the following examples from Florida and Illinois: 1

The provisions of this chapter are cumulative to the existing law regarding
an individual's right to consent, or refuse to consent, to medical treatment
and do not impair any existing rights or responsibilities which a health care
provider, a patient, including a minor, competent or incompetent person,
or a patient's family may have under the common law, federal
Constitution, state constitution, or statutes of this state. 2

Nothing in this Act shall impair or supersede any legal right or legal
responsibility which any person may have to effect the withholding or
withdrawal of death delaying procedures in any lawful manner. In such
respect the provisions of this Act are cumulative. 3

Several additional states that lack language similar to the above are modeled upon
the Uniform Health Care Decisions Act, 4 which provides such broad flexibility in the
recognition of any form of advance directive -- written and oral -- that non-pre-emption

1
Ala. Code 1975 §26-1-2(g)(9) (2007) [Durable Power of Attorney for Health Care, hereinafter “DPA”] and §22-
8A-9(d) [Living Will, hereinafter “LW”]; Ark. Code. Ann. §20-17-210 (West 2007) [LW]; Colo. Rev. Stat §15-14-
506(4)(a) (West 2007) [DPA]; DC. Code [HCDA]; Fla. Stat. Ann. §765.106 [combined act]; Ga. Code Ann. §31-32-
14 (West 2007) [combined Act]; Iowa Code Ann. 144B.12 (West 2007) [DPA] and 144A.11 [LW]; Idaho Code
§39-4508 (West 2007) [combined act]; 755 Ill. Comp. Stat. §35/9(d) (West 2006) [LW] and §45/4-3 [DPA]; Ind.
Code §16-36-4-17(e) (West 2007) [LW]; Kan. Stat. Ann. §65-28,108(d) (2006) [LW]; Ky. Rev. Stat. §311.637(5)
(West 2007) [combined act]; La. Rev. Stat. Ann §1299.58.10(C) (West 2007) [LW]; Md. Health-Gen. Code §5-
616(a) (West 2007) [combined act]; Minn. Stat. Ann. §145C.10(e) (West 2007) [DPA] and Minn. Stat. Ann.
§145B.17 [LW]; Mich. Comp. Laws Ann. §333.5660 and §333.5652 (West 2007); Mo. Ann. Stat. §459.055 (West
2007) [LW]; Mont. Code Ann. §50-9-205 (2007) [combined act]; Neb. Rev. Stat. §30-3401 (2006) [DPA] and
§§20-402 & 20-412 [LW]; Nev. Rev. Stat. Ann. §449.680 (West 2007) [LW]; N.H. Rev. Stat. Ann. §137-J:10
(2007) [combined act]; N.C. Gen. Stat. Ann. §32A-15(b) (West 2007) [DPA] and §90-320(b) [LW]; N.D. Cent.
Code §23-06.5-13(7) (2007) [combined act]; OK ST T.63 §3101.12(E) [combined act]; Or. Rev. Stat. Ann.
§127.560(1) (West 2007)[combined act]; 20 Pa. Cons. Stat. Ann. §5421 & 5423 (West 2007) [combined act]; R.I.
Gen. Laws §23-4.11-10(e) (2007) [LW] and §23-4.10-9(e) [DPA]; S.D. Codified Laws §34-12D-18 (2007) [LW];
Tex. [Health & Safety] Code Ann. §166.051 (Vernon 2007) [combined act]; Utah Code Ann. §75-2-1117(4) (West
2007) [combined act]; Va. Code Ann. §54.1-2992 (West 2007) [combined act]; Wis. Stat. Ann. §154.11(4) (West
2007) [LW]; W.Va. Code Ann. §§16-30-16(a) (West 2007) [combined act].
2
Fla. Stat. Ann. §765.106.
3
755 Ill. Comp. Stat. §35/9(d) (West 2006).
4
National Conference of Commissioners on Uniform State Laws (NCCUSL), The Uniform Health Care Decisions
Act (1993), http://www.nccusl.org/Update/uniformact_factsheets/uniformacts-fs-uhcda.asp (accessed November 13,
2007).

2
language is unnecessary. 5 The recognition that advance directive laws create no new
substantive rights and, instead, provide only elective pathways for implementing existing
rights is an important threshold principle with which to begin a review of the legal
landscape, for it sets these laws in their proper legal context. The North Carolina
statute states this perspective most succinctly in its statement of purpose of its advance
directive law:

a) The General Assembly recognizes as a matter of public policy the

fundamental right of an individual to control the decisions relating to his or her
medical care, and that this right may be exercised on behalf of the individual
by an agent chosen by the individual.
b) The purpose of this Article is to establish an additional, non-exclusive method
for an individual to exercise his or her right to give, withhold, or withdraw
consent to medical treatment, including mental health treatment, when the
individual lacks sufficient understanding or capacity to make or communicate
health care decisions. 6

This review starts with a brief synopsis of the common law and constitutional
underpinnings of advance directive policy in Section II. Section III examines the
incremental evolution of the relevant statutory law, followed by an analysis of a
fundamental paradigm shift in public policy in Section IV. Then, Section V turns to a
description of a possible next step in evolution, represented by the Physician Orders for
Life Sustaining Treatment (POLST) paradigm. Because only a minority of the adult
population has historically used advance directives, Section VI fills in the rest of the
surrogate landscape by addressing health care decision making authority where there is
no advance directive in place. Finally, the federal role in health care advance care
planning policy is examined in Section VII.

5
According to NCCUSL, nine states have substantially adopted the Uniform Health Care Decisions Act: Ala. Code
1975, §§22-8A-1 to 22-8A-13 (2007); Alaska Stat. §§13.52.010 to 13.52.395 (West 2007); Cal. Prob. Code
§§4670 to 4743 (West 2007); 16 Del. Code §§2501 to 2517 (West 2007); Haw. Rev. Stat. §§327E-1 to 327E-16
(2007); 18-A Me. Rev. Stat. Ann. §§5-801 to 5-818 (West 2007); Miss. Code 1972, §§41-41-201 to 41-41-229
(West 2007); N.M. Stat. Ann. 1978 §§24-7A-1 to 24-7A-18; Wyo. Stat. Ann. §§35-22-401 to 35-22-416 (2007).
6
N.C. Gen. Stat. Ann. §32A-15 (West 2007) [DPA]. Also see §90-320 [LW].

3
 II. COMMON LAW AND CONSTITUTIONAL
UNDERPINNINGS

The common law right to refuse or discontinue medical treatment has been
established and recognized for decades. Several grounds are asserted for this right.
Virtually every judicial writing that has addressed the issue starts with the well-known
tenet expounded by Justice Benjamin Cardozo in the 1914 case of Schloendorff v. N.Y.
Hospital:

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 without his patient’s consent commits an assault. 7

In the context of personal injury law, this right of self-determination was recognized
first as the common law offense of battery which made any offensive, unconsented
touching an actionable wrong. From these common law roots came two logical
extensions -- the doctrine of "informed consent" and a corollary right to refuse
treatment.

The “informed” component of consent was not directly acknowledged until the
California cases of Salgo v. Leland Stanford Jr. University Bd. of Trustees in 1957 (a
battery case), 8 and Natanson v. Kline in 1960 (a malpractice case). 9 Through the
1960s and beyond, informed consent criteria became the subject of a great deal of state
legislation and litigation. 10 Today, the failure to obtain informed consent is typically an
issue of negligence in medical malpractice claims, rather than of battery.

In general terms, informed consent may be described as the physician’s “legal

obligation to make adequate disclosures of the medically recognized risks, benefits, and
alternatives to any proposed diagnostic or therapeutic medical procedures to allow their
patients to make informed decisions and to give an informed consent to those
procedures.” 11 Another way to describe informed consent -- as well as informed refusals
of consent -- is through its three requisite elements: informed, voluntary, and
competent. 12 Courts and legislators have taken differing tacks in defining the nature
and depth of information required to be disclosed to patients, while the voluntary and

7
Schloendorff v. Society of N.Y. Hospital, 105 N.E. 92, 93 (N.Y. 1914).
8
154 Cal.App.2d 560, 317 P.2d 170 (Cal.App. 1957).
9
187 Kan. 186, 354 P.2d 670 (Kan. 1960).
10
See Paul Appelbaum, Charles Lidz, & Alan Meisel, Informed Consent: Legal Theory And Clinical Practice
(Oxford U. Press 1987); Ruth R. Faden, Tom L. Beauchamp & Nancy M. P. King, A History and Theory of
Informed Consent (Oxford U. Press 1986).
11
See Jon F. Merz, On A Decision-Making Paradigm of Medical Informed Consent, 14 J. Legal Med. 231,
*232 (1993).
12
See Marshall B. Kapp, Geriatrics and the Law: Understanding Patient Rights and Professional Responsibilities
22-32 (3rd ed., Springer Pub. 1999).

4
competent components have remained more consistent in concept, but only in concept.
In practice, the nuances, variability, and continuum of voluntariness and decisional
capacity pose everyday challenges to health care providers. 13

Constitutional bases of the right to refuse medical treatment have included:

• First Amendment religious grounds. Examples have typically involved Jehovah's

Witnesses blood transfusion cases. 14

• A right of privacy based primarily on the Due Process Clauses of the Fourteenth
Amendment and on state constitutions. Several U.S. Supreme Court cases
identify a constitutional right of privacy, 15 although none, not even the decision in
Supreme Court’s Cruzan decision, discussed below, has extended the right of
privacy to include refusals of life-sustaining treatment. But several state
appellate level decisions, including the first well-known “right to die” case of
Karen Ann Quinlan in 1976, have upheld decisions to refuse medical treatment
on privacy grounds, relying on either or both state and federal constitutions. 16

• A liberty interest, based on the Fourteenth Amendment. Cruzan v. Director,

Missouri Department of Health -- based its analysis, though provisional, on a
constitutional “liberty” interest. 17

In Cruzan, the Court concluded that “[t]he principle that a competent person has a
constitutionally protected liberty interest in refusing unwanted medical treatment may be
inferred from our prior decisions.” 18 The Court declined the opportunity to base its
analysis on a constitutional privacy right, instead explaining that: "[w]e believe this issue
is more properly analyzed in terms of a Fourteenth Amendment liberty interest." 19

The Court also rejected any legal distinction between artificially supplied nutrition
and hydration and other forms of medical treatment: "[f]or purposes of this case, we
assume that the U.S. Constitution would grant a competent person a constitutionally

13
Id.
14
See Alan Meisel & Katy L. Cerminara, The Right to Die: The Law of End-of-Life Decisionmaking §206 [C] (3rd
ed., Aspen Pub. 2007).
15
See e.g., Olmstead v. United States, 277 U.S. 438, (1928) (Brandeis J., dissenting), overruled, Katz v United
States, 389 U.S. 347 (1967); Griswold v. Connecticut, 381 U.S. 479 (1965); Roe v. Wade, 410 U.S. 113 (1973); cf.
Webster v. Reproductive Health Services, et al., 492 U.S. 490, 109 S.Ct. 3040 (1989).
16
Matter of Quinlan. 70 N.J. 10, 355 A.2d 647, 663 (N.J. 1976) (based on federal and state constitutional right of
privacy); see also, e.g., In re Guardianship of Browning, 568 So.2d 4 (Fla. 1990); Rasmussen v. Fleming, 741 P.2d
674, 681-82 (Ariz. 1987); Bartling v. Superior Court, 209 Cal. Rptr. 220, 225 (Ct. App. 1984); In re Spring, 405
N.E.2d 115, 119 (Mass. 1980).
17
Cruzan v. Director, Missouri Department of Health, 497 U.S. 261, 110 S.Ct. 2841 (1990), aff’g Cruzan v.
Harmon, 760 S.W.2d 408 (Mo. 1988).
18
497 U.S. at 278.
19
Id. at 278, n. 7.

5
protected right to refuse lifesaving hydration and nutrition." 20 This stance affirmed the
view of the majority of state courts that had considered the question.

Finally, the Court held that the U.S. Constitution allows states considerable leeway
in establishing, as Missouri did, a "procedural safeguard" for incompetent persons who
cannot exercise the right to refuse treatment on their own. 21 Specifically, it held
Missouri's clear and convincing evidence standard to be a constitutionally permissible
procedural safeguard, although not required. Only a few states have been nearly as
restrictive as Missouri in imposing and defining such a standard. 22

The overwhelming impact of the Cruzan decision has been to solidify the
constitutional basis to the right to refuse life-sustaining treatment. The acceptance of
such a constitutional right reinforces the validity and weight of all authentic expressions
of patient wishes. The more challenging constitutional issue for policy purposes
continues to be to what extent states can dictate “procedural safeguards” in the
advance care planning process, both in the way individuals articulate their wishes and in
the empowerment of surrogate decision makers. While the latter option was not at
issue in Cruzan, it was especially noteworthy that the concurring opinion of Justice
O’Conner suggested that states may be constitutionally required to give effect to
decisions made by a surrogate appointed by the patient. 23

An even more controversial issue related to end-of-life decision making confronted

the U.S. Supreme Court just a few years after Cruzan -- whether there was a
constitutional right to physician aid-in-dying for terminally ill patients who requested a
prescription for lethal drugs. In a pair of decisions in 1997, the Court held that neither
the Due Process clause nor the Equal Protection clause of the 14th Amendment created
a constitutional right to assisted suicide. 24 At the same time, the decision did not
preclude states from creating by statute, as Oregon has done, a process for aid-in-
dying. 25

20
Id. at 279.
21
Id. at 280.
22
See, e.g. Westchester County Med. Ctr. (O'Connor), 531 N.E.2d 607 (NY 1988); Elbaum v. Grace Plaza of Great
Neck, Inc., 544 N.Y.S.2d 840 (App.Div. 1989); In re Martin, 450 Mich. 204, 538 N.W.2d 399 (1995); In re Tavel,
661 A.2d 1061 (Del. 1995).
23
497 U.S. at 289-292.
24
Washington v. Glucksberg, 117 S.Ct. 2258, 138 L.Ed.2d 772 (U.S. 1997); Vacco v. Quill, 521 U.S. 793, 117 S.Ct.
2293, 138 L.Ed.2d 834 (1997).
25
See Or. Rev. Stat. Ann. §§127.800 to 127.897 (West 2007).

6
 III. THE STATUTORY EVOLUTION OF
ADVANCE DIRECTIVES

The common law concept of informed consent, buttressed by constitutional

principles of privacy and liberty have formed the primary platform from which advance
medical directives spring. But, unlike the process of obtaining informed consent for a
present treatment, advance directives are usually made well before the time a patient
can be fully informed of the risks, benefits, and alternatives to any proposed diagnostic
or therapeutic medical procedures.

The first advance directive -- called a living will -- was proposed by the Euthanasia
Society of America in 1967, 26 and Luis Kutner, a human-rights lawyer from Chicago
who represented the Society, proposed it as a model in an oft-quoted 1969 Indiana Law
Journal article. Kutner began with the common law and constitutional law premise that,
“The law provides that a patient may not be subjected to treatment without his consent”
and that the individual has “the right to refuse to permit a doctor to treat him, even if
such treatment would prolong his live (sic).” 27 He continues:

The patient may not have had, however, the opportunity to give his
consent at any point before treatment. He may have become the victim of
a sudden accident or a stroke or coronary. Therefore, the suggested
solution is that the individual, while fully in control of his faculties and his
ability to express himself, indicate to what extent he would consent to
treatment. The document indicating such consent may be referred to as
“a living will,” “a declaration determining the termination of life,” “testament
permitting death,” “declaration for bodily autonomy,” “declaration for
ending treatment,” “body trust,” or other similar reference. 28

Interestingly, Kutner also analogized the living will to “a revocable or conditional

trust with the patient’s body as the res, the patient as the beneficiary and grantor, and
the doctor and hospital as the trustees.” 29 As with any trust instrument, the document
sets forth the terms for managing the res, which in the context of medical care, means
the extent to which the health care providers should undertake treatment. Both
informed consent and trust paradigms are characteristic of a legal transactional
approach that became the paradigm for state advance directive legislation.

The legislative landscape of health care advance directives evolved relatively

quickly but incrementally, starting with California’s adoption of the first living will statute

26
Henry R. Glick, The Right-to-Die: State Policymaking and the Elderly, 5 Journal of Aging Studies 2830307, 285
(1991).
27
Luis Kutner, Due Process of Euthanasia: The Living Will, A Proposal, 44 Indiana Law Journal 539, 550 (1969).
28
Id. at 551.
29
Id.

7
in 1976 (although it used the term “Directive to Physicians” rather than the popular
“living will”). The paradigm offered individuals a standardized tool to express their
wishes about life-sustaining treatment -- usually to withhold or withdraw it -- in the event
of a terminal condition or permanent unconsciousness, and to physicians it offered
statutory immunity if they complied with the patient’s wishes in good faith.

One might ask today, more than 30 years later, why physicians would want or
need immunity to do what the underlying law already seemed to require (i.e., respecting
patients’ wishes). The technological developments in medicine during the 1960s and
1970s thrust medicine into a new world where, for the first time, it often became difficult
to distinguish saving life from prolonging suffering and death. 30 A Time Magazine
review of the then pending Karen Ann Quinlan trial in New Jersey in 1975, captured the
tenor of the time:

[A]lmost all doctors are decidedly uneasy about terminating treatment

once it has been started, especially if doing so will mean the certain death
of a patient. Many doctors, after all, are taught to regard death as an
enemy and to do all they can to defeat it -- or at least to keep it at bay for a
while. Many regard "pulling the plug" as an act akin to euthanasia, which
is forbidden by both law and the medical code. 31

The Time article ended with broader policy concerns that still resonate in today’s
debates about termination of treatment:

For although the Quinlan case concerns mainly the maintenance of life by
artificial means, it could, if carried to its logical conclusion, be applied in
state hospitals, institutions for the mentally retarded and for the elderly.
Such places currently house thousands of people who have neither hope
nor prospects of a life that even approaches normality. A decision to
remove Karen's life-support system could prompt new suits by parents
seeking to end the agony of incurably afflicted children, or by children
seeking to shorten the suffering of aged and terminally ill parents.

It was concerns such as these that resulted in a legal model of advance care planning
that focused on conventional legal formalities or procedural protections intended to
protect vulnerable populations from harm, specifically the premature termination of life
due to lack of understanding, or diminished capacity of, or undue influence upon, the
signor of the living will.

30
Bill Colby provides an enlightening overview of the key medical developments leading up to major right to die
cases from Karen Ann Quinlan to Terri Schiavo. See William H. Colby, Unplugged: Reclaiming Our Right to Die
in America (AMACOM 2006).
31
Time Magazine, A Life in the Balance, Monday, November 3, 1975,
http://www.time.com/time/magazine/article/0,9171,913631,00.html (accessed November 13, 2007).

8
 The number of living will laws snowballed during the next ten years, so that by the
end of 1986, 41 states had adopted living will laws. 32 But it was not long before the
shortcomings of living wills became apparent to policy makers, especially with respect
to the narrow range of decisions it applied to. Policy makers turned to validating and
reshaping the use of durable powers of attorney to apply to health care. 33

Powers of attorney existed in the common law as a tool by which a principal

empowers an agent to act on the principal's behalf. It was originally used to delegate
authority over property matters. However, in common law, a power of attorney was
revoked by the incompetency or incapacity of the principal. Thus, the common law
power had no utility as a planning tool for incapacity. In 1954, Virginia enacted the first
“durable” power of attorney statute that allowed an agent to continue to act as
empowered by a power of attorney even after the principal became disabled,
incompetent, or incapacitated. 34 Other states followed suit, and the tipping point came
in 1969 when the National Conference of Commissioners on Uniform State Laws
promulgated a new Uniform Probate Code (UPC) that recognized durability if expressly
provided for in the document. Thereafter, states adopted durable power of attorney
laws at a rapid pace. 35

The conventional view of powers of attorney is that they can be used for any
purpose not contrary to law or public policy of a given state. 36 Their use as a health
care decision making tool has obvious advantages over the living will. The President’s
Commission favored their use for health care decision making in their 1983 report, but
the Commission also voiced a common concern for the potential of abuse inherent in
these statutes:

These statutes do not have rigorous procedures because they were

enacted primarily to avoid the expense of full guardianship or
conservatorship proceedings when dealing with small property interests.
Adapting them to the context of health care may require that greater
procedural safeguards be provided: precisely which safeguards are
needed might best be determined after more experience has been
acquired. 37

32
Henry R. Glick, supra note 26, at 289. By the early 1990s all states except Massachusetts, Michigan, and New
York have living will statutes. These three states chose to adopt only health care power of attorney legislation, but
their laws also permit the maker to include any wishes, guidance, or other directions.
33
See Charles P. Sabatino, Death in the Legislature: Inventing Legal Tools for Autonomy, 19 N.Y. Rev. of Law &
Social Change, 309-339 (1991-92).
34
Va. Code Ann. §11-9.1 (West 2007).
35
See Carolyn L. Dessin, Acting As Agent Under A Financial Durable Power Of Attorney: An Unscripted Role, 75
Neb. L. Rev. 574-620, at 576-580 (1996).
36
Francis J. Collin, Jr., John J. Lombard, Jr., Altert L. Moses, & Harley J. Spitler, Durable Powers of Attorney and
Health Care Directives §3.01 (3rd ed., West Group 1997).
37
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research,
Deciding to Forego Life-Sustaining Treatment 147 (U.S. Government Printing Office March 1983).

9
 To address these concerns while encouraging their use, states began crafting
special durable power of attorney for health care statutes or, alternatively, adding proxy
provisions to their living will statute. This wave of legislation took place roughly from the
mid-1980s to the mid-1990s, with California again leading the pack with its 1983 law. 38
By the end of 1988, only 12 states had such statutes, but by mid-1993, the District of
Columbia and every state, except Alabama, had enacted some version of a statutory
health care power of care statute. 39 Alabama followed course in 1997. 40

A third wave of legislation began in the early 1990s, triggered by a growing

awareness of unwanted resuscitations of terminally ill patients living at home or in
hospice, occurring when the expected medical crisis arises and someone on the scene
calls 911. Absent an out-of-hospital do-not-resuscitate (DNR) protocol, emergency
medical services personnel are obligated to do everything possible to resuscitate a
patient whose heart or breathing has stopped unless the patient himself or herself
refuses help. An advance directive does not normally trump that obligation. 41 To
address these unwanted medical encounters, states began enacting legislation or
regulations in the early 1990s to permit seriously ill persons in the community to avoid
unwanted resuscitation through the use of out-of-hospital DNR orders (sometimes
called do-not-attempt-resuscitation orders, comfort care orders, cardiopulmonary
resuscitation (CPR) directives, or other name). These protocols most often required the
signing of a DNR order by both physician and patient (with many states permitting a
surrogate to sign) and the use of a specially designed identifier to be kept on or near the
patient. The protocols, in effect, created a kind of hybrid special advance directive and
portable doctor’s order. By the end of 1999, 42 states had statewide protocols in place,
most frequently created by legislation

A fourth wave of legislation was not so much a wave as a slowly rising tide, going
as far back as the 1960’s and continuing to the present. Unlike the advance directive
waves, this trend addresses the other side of the coin -- how decisions are to be made
in the absence of an advance directive. An awareness that the great majority of
Americans were not utilizing advance directives fueled interest in this subject. 42 As is
still the case today, most decisions relating to end-of-life care for persons lacking
decisional capacity were made without the guidance or authority of a health care

38
1983 Cal. Stat. ch. 1204, §10, at 4615-22 (enacting Cal. Civ. Code §§2430-2443).
39
American Bar Association (ABA) Commission on Law and Aging, Surrogate Decision-Making in Health Care:
Legislative Overview (June 1993) (unpublished legislative tracking report).
40
Ala. Code 1975 §22-8A-1 to -14 (2007).
41
See K.V. Iserson, Foregoing Prehospital Care: Should Ambulance Staff Always Resuscitate? 17 Journal of
Medical Ethics 3-4 (1991); K.L. Koenig et al., Do-Not-Resuscitate Orders. Where Are They In The Prehospital
Setting? 8(1) Prehospital Disaster Medicine 51-54 (1993); R.A. Partridge et al., Field Experience with Prehospital
Advance Directives, 32 Annals of Emergency Medicine 589-93 (1998) (survey of local EMS providers in
Massachusetts and New Hampshire prior to creation of statewide protocols).
42
See Steven H. Miles et al., Advance End-of-life Treatment Planning. A Research Review, 156 Arch Intern Med
1062 (May 27, 1996); U.S. General Accounting Office, Patient Self-Determination Act: Providers Offer Information
on Advance Directives but Effectiveness Uncertain, HEHS-95-135 (1995); Dallas M. High, Advance Directives and
the Elderly: A Study of Intervention Strategies to Increase Use, 33 Gerontologist 342 (1993).

10
advance directive. State law frequently failed to identify who, in the absence of an
appointed agent or guardian, was authorized to make decisions in these instances.

Default surrogate consent or family consent laws provide an answer to that

question. These exist is some 40 states and the District of Columbia, although they
vary significantly in breadth and depth. 43 All create a list of permissible surrogates,
usually starting with spouse and a next-of-kin priority list. Some limit surrogates to fairly
close relatives. Iowa, for example, authorizes one’s spouse, followed by an adult child,
a parent, and adult sibling. 44 Others extend to any adult relative with no limitation of
degree. 45

Seventeen states include "close friend" or its equivalent in the list of permissible
surrogates, usually at or near the end of the order of priority. 46 Arizona additionally
includes "patient's domestic partner," as an authorized surrogate for some health
decisions, although the definition of close friend may be broad enough to encompass
domestic partner in other states. 47

These laws differ, in part, according to the kind of statutory context in which they
emerged.

• Some were included in informed consent statutes enacted in the 1960s and
1970s. 48 These laws provided for family consent to treatment primarily as a way
to ensure access to care. They were not enacted with refusals of treatment
especially in mind, nevertheless, are applicable given the conceptual unity of
consent and refusal.

• Some living will statutes include family consent authority, but since these statutes
are typically limited to patients in terminal conditions or in permanent
unconsciousness and to decisions about life-sustaining treatment, their
application to the full range of health care decisions may be in question. 49

43
A summary chart of these laws, updated annually by the ABA Commission on Law and Aging, is available on the
Internet at http://www.abanet.org/aging/legislativeupdates/home.shtml (last updated July 2006).
44
Iowa Code Ann. §144A.7 (West 2007).
45
See e.g., Ala. Code 1975 §22-8A-11 and -6 (2007); Ky. Rev. Stat. §311.631 (West 2007); La. Rev. Stat. Ann.
§40:1299.58.5 (West 2007); Mont. Code Ann. §50-9-106 (2007); Nev. Rev. Stat. Ann. §449.626 (West 2007); Ohio
Rev. Code Ann. §2133.08 (West 2007); Okla. Stat. Ann. tit. 63, §3102A (West 2007); Tenn. Code Ann §68-11-1806
(West 2007); Tex. [Health & Safety] Code Ann. §166.039 (Vernon 2007); Va. Code Ann. §54.1-2986 (West 2007).
46
Id.
47
For example, Florida law defines "Close personal friend" as “any person 18 years of age or older who has
exhibited special care and concern for the patient, and who presents an affidavit to the health care facility or to the
attending or treating physician stating that he or she is a friend of the patient; is willing and able to become involved
in the patient's health care; and has maintained such regular contact with the patient so as to be familiar with the
patient's activities, health, and religious or moral beliefs.” Fla. Stat Ann. §765.101(c) (West 2001).
48
See e.g., Ga. Code Ann., §31-9-2 (West 2007).
49
See e.g., Ark. Code Ann. §20-17-214 (West 2007).

11
 • Some are decision-specific laws, such as New York's narrow family consent
provision that deals only with DNR orders. 50 A few other states have enacted
family consent provisions specific to medical research consent. 51

• Several states have included family/surrogate consent within comprehensive

state health decisions statutes, as explained below.

These laws vary significantly in their scope of authority and other limitations, which
will be discussed in Section VI below.

A fifth and most important wave of legislation began as a merging of the separate
health care decisions acts states had already enacted. This was driven, in part, by the
public’s lack of understanding these legal tools and their lack of use. Most estimates of
completion rates in the early 1990’s hovered around 20 percent or less. 52 A substantial
lack of awareness and misunderstanding of advance directives persisted. 53

New Jersey enacted the first combined statute in 1991, merging the living will
(called an “instruction directive”) and the durable power of attorney for health care
(called “a proxy directive”) into a single “advance directive for health care." 54 By the
beginning of 2000, some 16 states had comprehensive or combined advance directive
statutes, which at a minimum, combined living wills and proxies in the same law. 55 By
2002, 20 states had combined statutes. 56 By early 2007, the number had inched up to
25. The more comprehensive of these statutes also recognize the authority of default
surrogate decision makers in the absence of an advance directive and encourage, or at
least provide the option, of combining organ donation instructions in one’s directive. 57

50
N.Y. Pub. Health Law §2965 (McKinney 2007).
51
See e.g., Okla. Stat. Ann tit. 63, §3102A (West 2007).
52
Edward J. Larson & Thomas A. Eaton, The Limits of Advance Directives: A History and Assessment of the Patient
Self-Determination Act, 32 Wake Forest Law Review 249-293, at 276-278 (Summer 1997).
53
Id. at 270-276.
54
N.J. Stat. Ann. §26:2H-53 to -81 (West 2007).
55
ABA Commission on Law and Aging, End-of-Life Care Legal Trends 2000 (2000) (unpublished legislative
tracking report, citing Alabama, Arizona, Connecticut, Delaware, Florida, Hawaii, Kentucky, Maine, Maryland,
Minnesota, Mississippi, New Jersey, New Mexico, Oklahoma, Oregon, and Virginia).
56
ABA Commission on Law and Aging, Health Decisions Legislative Update, 2002 (unpublished legislative
tracking report); also cited in Means to a Better End: A Report on Dying in America Today 70 (November 2002)
http://www.rwjf.org/files/publications/other/meansbetterend.pdf (accessed November 13, 2007).
57
During the 1990s, interest also grew in establishing special advance directives for mental health decisions, but
because these focus on a distinctive set of issues not directly related to end-of-life decision making, they are not
covered in this review. In their most comprehensive form, mental health advance directives allow individuals to
bind themselves to psychiatric treatment in advance of needing it for the purpose of overcoming illness-induced
refusals of treatment (sometimes called “Ulysses clauses”). Between 1991 and 2006, 27 states enacted statutes
authorizing psychiatric advance directives in some form. Breanne M. Sheetz, The Choice to Limit Choice: Using
Psychiatric Advance Directives to Manage the Effects of Mental Illness and Support Self-Responsibility, 40 U.
Mich. J.L. Reform 401-433, at 408 (Winter 2007).

12
 The primary model for a flexible combined advance directive and default surrogate
law has been the Uniform Health-Care Decisions Act. 58 The Uniform Act was
promulgated as a national model by the National Conference of Commissioners on
Uniform State Laws in 1993, and recognized by the ABA in 1994. The Act establishes
very simple rules for recognizing almost any kind of written or oral statement as an
advance directive. Even unwitnessed documents are valid under the Uniform Act.
However, states that have adopted the Uniform Act have almost always added more to
the Act’s baseline requirements. 59 Indeed, all states that have adopted it have added at
least a witnessing requirement. The Act provides a comprehensive, sample form with
options for instructions, appointment of an agent, organ donation, an option to name a
primary physician, and it recognizes default surrogates in the absence of an advance
directive.

The federal legislative role in the above evolution of advance directives has been
minimal. The primary congressional foray into this subject is the Patient Self-
Determination Act, enacted as part of the Omnibus Budget Reconciliation Act (OBRA)
of 1990. 60 The Act was a fairly modest amendment to federal Medicare and Medicaid
law, but it was hoped that it would have an effect on the way most adults make and plan
for health care decisions. It also legislatively affirmed the use of the term “advance
directive”. At its heart, it is an information and education mandate. It does not create or
change any substantive right to health care decision making. Rather, it requires all
Medicare and Medicaid provider organizations (specifically, hospitals, skilled nursing
facilities, home health agencies, hospices, and prepaid health care organizations) to do
five things:

1. "provide written information" to patients at the time of admission concerning "an

individual's right under state law (whether statutory or as recognized by the
courts of the state) to make decisions concerning such medical care, including
the right to accept or refuse medical or surgical treatment and the right to
formulate advance directives;"
2. "maintain written policies and procedures" with respect to advance directives
(e.g., living wills and health care powers of attorney) and to "provide written
information" to patients about such policies;
3. "document in the individual's medical record whether or not the individual has
executed an advance directive;"

58
Uniform Health-Care Decisions Act available at http://www.law.upenn.edu/bll/ulc/fnact99/1990s/uhcda93.htm
(accessed November 13, 2007). For a descriptive review of the Uniform Act, see Charles P. Sabatino, The New
Uniform Health-Care Decisions Act: Paving a Health Care Decisions Superhighway? 53 Maryland Law Review
101 (1994).
59
According to the NCCUSL, the Uniform Act has been adopted in whole or in part in Alabama, Alaska, Delaware,
Hawaii, Maine, Mississippi, New Mexico, and Wyoming.
http://www.nccusl.org/Update/uniformact_factsheets/uniformacts-fs-uhcda.asp (accessed November 13, 2007).
60
The Patient Self-Determination Act was enacted as part of the OBRA of 1990, signed by the President on
November 5, 1990. OBRA of 1990, Pub. L. No. 101-508, §§4206 and 4751 (Medicare and Medicaid, respectively),
codified in part at 42 U.S.C. §§1395cc(a)(1)(Q), 1395cc(f), 1395mm(c)(8), 1396a(a)(57), 1396a(a)58, 1396a(w).

13
 4. "ensure compliance with the requirements of state law (whether statutory or as
recognized by the courts of the state) respecting advance directives at facilities
of the provider or organization;" and
5. "provide (individually or with others) for education for staff and the community on
issues concerning advance directives." 61

Moreover, the Act specifically prohibits providers from any form of discrimination
based on advance directives. Facilities cannot "condition the provision of care or
otherwise discriminate against an individual based on whether or not the individual has
executed an advance directive." 62

To promote the dissemination of more accurate and consistent information, the Act
mandated states to develop written descriptions of relevant state law:

[T]he state, acting through a state agency, association, or other private

non-profit entity, [shall] develop a written description of the law of the state
(whether statutory or as recognized by the courts of the state) concerning
advance directives that would be distributed by providers or organizations
under the requirements of [the Act]. 63

Finally, the Act required the U.S. Department of Health and Human Services
(HHS) to undertake a public education campaign. This apparently includes developing
or approving national educational materials, assisting states in developing state-specific
documents, and mailing information to Social Security recipients. However, other than
preparing a public information document (reprinted at 57 F.R. 8194, 8199, March 6,
1992), HHS has done relatively little.

61
42 U.S.C.A. §1395cc(f); 42 U.S.C.A. §1396a(w). See also PSDA regulations at 42 CFR Parts 417, 430, 431, 434,
483, 484, and 489.
62
42 U.S.C.A. §1395cc(f); 42 U.S.C.A. §1396a(w).
63
42 U.S.C.A. §1396a(a)(A)(58).

14
 IV. THE PARADIGM SHIFT IN STATE LAW

One way to understand the evolution of health decisions legislation is to examine

what is emphasized and regulated in the legislation. The result, as elaborated below, is
a landscape that has predominantly emphasized standardized legal formalities and
restrictions, with procedural requirements or limitations intended to serve as protections
against abuse or error. For shorthand, we will refer to this as a “legal transactional
approach.” However, these laws have been in a gradual but constant state of flux and
moving incrementally toward an approach that more strongly acknowledges an ongoing
and flexible process of communication (i.e., a “communications approach”).

The Legal Transactional Approach

A legal transactional framework focuses on the formal steps of creating and
implementing the legal tools to direct or delegate health care decisions in advance of
decisional incapacity. In this light, the creation of advance directives are treated much
like conventional conveyances of interests in property or contracts that establish
important rights and obligations. The validity of the transaction focuses on required
legal formalities and standardization of the process.

Legal formalities are intended to impress upon the parties the seriousness of a
transaction and the potential consequences of the transaction. Because this is a legal
tool that will often be signed and used without the advice of legal counsel, detailed
standardized formalities are relied upon to ensure the voluntary, knowing, and
competent execution of the transaction -- the same elements central to informed
consent. However, the task cannot be equated with giving informed consent to a
particular treatment, because making a judgment about how one wants to be treated in
a future hypothetical situation is by necessity far more value driven and far less fact
driven than making a contemporaneous choice about a health care treatment for a
condition about which the person has been fully informed. 64 Therefore the focus of the
voluntary, knowing, and competent act is on the transaction that creates the advance
directive. 65 Finally, another goal of standardization of forms is the enhancement of their
recognition and compliance by health care providers.

64
See Nancy K. Rhoden, The Limits of Legal Objectivity, 68 N.C. L. Rev. 845 (1990); Allen E. Buchanan & Dan W.
Brock, Deciding for Others: The Ethics of Surrogate Decision Making 110 (Cambridge U. Press 1990); Rebecca S.
Dresser, Advance Directives, Self-Determination, and Personal Identity, in Advance Directives in Medicine 155, 156
(Chris Hackler, Ray Moseley & Dorothy E. Vawter eds., Praeger Publishers 1989).
65
One might also make a case that informed consent must be conceptualized differently in the context of advance
care planning in that it is not necessarily transaction specific, although it may be (if for example, the individual has a
definite view about a particular treatment). Instead, it is primarily “health state” specific, meaning that it requires a
voluntary, knowing, and competent decision that certain future adverse health states are ones in which the individual
chooses to continue or not continue living.

15
 States have required several kinds of legal formalities for execution of advance
directives:

1. Standardized statutory forms. In most states, these are provided as optional

models, but they may sometimes be seen as the only safe option to use. Often
they are perceived as mandatory if the law requires that the advance directive be
“substantially” in the form contained in the statute. Six states require any
advance directive to be “substantially” in the form contained in the statute; 66 four
more apply the requirement only to health care powers of attorney; 67 and three
more only to living wills. 68

2. Required disclosures or warnings. Eight states require specific disclosures or

notice to persons executing health care powers of attorney. 69 In six of these
states the requirement is part of the mandatory forms noted above, but two --
Ohio and Wisconsin -- apply the requirement to any preprinted form distributed in
the state.

3. Prescribed phrases for authorizing certain wishes. A number of states require

that the directive expressly address certain matters, such as nutrition and
hydration, with specificity if it is the individual’s intent to authorize their
withdrawal. The specificity required in four states rises to the level of mandatory
“magic words.” 70 For example, Ohio requires that:

[T]he declarant’s declaration shall use either or both of the terms

“terminal condition” and “permanently unconscious state” and shall
define or otherwise explain those terms in a manner that is
substantially consistent with the provisions of [code section].

Moreover, the declarant’s wishes must be communicated by:

Including a statement in capital letters or other conspicuous type,

including, but not limited to, a different font, bigger type, or boldface
type, that the declarant’s attending physician may withhold or

66
Ala. Stat. §22-8A-4(h) (2007); Kan. Stat. Ann. §58-632 (2006); Ky. Rev. Stat. §311.625(1) (West 2007); Or. Rev.
Stat. Ann. §127.531 (West 2007); S.C. Code Ann. §62-5-504(C)(1)(a) & (D) (2006); Utah Code Ann. §75-2-
1104(4) (West 2007).
67
Nev. Rev. Stat. Ann. §449.830 (West 2007); N.H. Rev. Stat. Ann. §137-J:3 (2007); Ohio Rev. Code §1337.17
(West 2007); Tex. [Health and Safety] Code Ann. §166.163 (Vernon 2007).
68
D.C. Code §7-622(c) (2007); Ind. Code §16-36-4-9 (West 2007); Minn. Stat. Ann. §145B.04 (West 2007).
69
Nev. Rev. Stat. Ann. §449.830 (West 2007); N.H. Rev. Stat. Ann. §137-J:3 (2007); Ohio Rev. Code §1337.17
(West 2007); Or. Rev. Stat. Ann. §127.531 (West 2007); S.C. Code Ann. §62-5-504(D) (2006); Tex. [Health and
Safety] Code Ann. §166.163 (Vernon 2007); Vt. Stat. Ann. tit. 18, §5276 (West 2007); Wis. Stat. Ann. §155.30(1)
(West 2007).
70
Ind. Code §30-5-5-17 and §16-36-1-14 (West 2007); Mich. Comp. Laws Ann. §700.5507(4) (West 2007); N.C.
Gen. Stat. Ann. §90-321 (West 2007); Ohio Rev. Code §2133.02(A)(2) & (3) and §1337.13(E) (West 2007).

16
 withdraw nutrition and hydration [under conditions specified in the
act]. 71

4. Required witnessing and restrictions on who may be a witness. In most states,

two adult witnesses are sufficient for execution of a directive, although witness
qualifications -- or rather disqualifications -- can be many. Most commonly
disqualified as witnesses are the named agent, the treating health care provider
and facility staff. 72 Three states require the directive to be both witnessed and
notarized. 73 Six states impose special witnessing requirements on directives
executed in an institutional setting. 74 South Carolina provides an example of
extensive witness disqualifications. Each witness must state in an affidavit that:

the witness is not related to the principal by blood, marriage, or

adoption, either as a spouse, lineal ancestor, descendant of the
parents of the principal, or spouse of any of them; not directly
financially responsible for the principal's medical care; not entitled
to any portion of the principal's estate upon his decease under a will
of the principal then existing or as an heir by intestate succession;
not a beneficiary of a life insurance policy of the principal; and not
appointed as health care agent or successor health care agent in
the health care power of attorney; and that no more than one
witness is an employee of a health facility in which the principal is a
patient, no witness is the attending physician or an employee of the
attending physician, or no witness has a claim against the
principal's estate upon his decease. 75

5. Limitations on who may serve as agent or proxy. Most states restrict who may
serve as agent or proxy, most typically the treating health care provider or
employees of the treating facility, although exceptions for relatives are common.
In three states, the agent must accept their appointment in writing. 76

The legal transactional approach also utilizes an array of mandatory procedures or

other limitations. A recent review of these limitations on surrogate decision making

71
Ohio Rev. Code §2133.02(A)(2) & (3) (for living wills) and §1337.13(E) (West 2007) (for health care powers of
attorney).
72
ABA, Health Care Power of Attorney and Combined Advance Directive Legislation (Chart), September 1, 2004,
available at http://www.abanet.org/aging/legislativeupdates/home.shtml (accessed November 13, 2007).
73
Mo. Ann. Stat. §404.705(3) and §404.810 (West 2007); N.C. Gen. Stat. Ann. §32A-16(3) (West 2007); W.Va.
Code Ann. §16-30-4(a) (West 2007).
74
Cal. Prob. Code §4675(a) (West 2007); Conn. Gen. Stat. §19a-576(b) & (c) (West 2007); 16 Del. Code §2511(b)
(West 2007); N.Y. Pub. Health Law §2981(2)(b) & (c) (McKinney 2007); N.D. Cent. Code §23-06.4-03, §23.06.5-
10(2) & (3) (2007); Vt. Stat. Ann. tit. 18, §5271(b) & (c) (West 2007).
75
S.C. Code Ann. §62-5-504(C)(1)(c) (2006).
76
Mich. Comp. Laws Ann. §700.5507 (West 2007); N.D. Cent. Code §23-06.5-06 (2007); Or. Rev. Stat. Ann.
§127.525 (West 2007).

17
conducted by the ABA Commission on Law and Aging identified the following limitations
occurring in varying frequency: 77

• All living will statutes by definition impose medical diagnosis prerequisites before
taking action (usually a diagnosis of terminal condition or permanent
unconsciousness), but a dozen states also require a diagnostic precondition
before an agent may forgo life-sustaining procedures. The complexity of the
process of diagnosis and documentation also varies.

• A majority of states impose limitations on implementing advance directives if the

patient is pregnant.

• Twelve states include limitations that prohibit a surrogate from consenting to

medical interventions that are especially consequential or controversial, such as
sterilization or abortion or psycho-surgery.

• Thirty-three states have special limitations on consent by agents, default

surrogates, or guardians to forgo artificial nutrition or hydration. These range
from an absolute bar on default surrogates to required diagnostic
preconditions. 78

The legal approach to advance care planning may have served to impede rather
than promote effective advance care planning. An ample body of research,
summarized by Fagerlin and Schneider and others, reveals that conventional advance
directives have had relatively little impact on end-of-life decision making. Tersely
summarized, some of the significant reasons for the lack of impact include the following:

− too few people make use of the legal tools;

− when they do, they do not understand the forms they complete nor the
future decisions that might have to be made;
− the forms themselves do not provide much guidance;
− patents’ goals and preferences for care may change;
− when principals name an agent or proxy, the agent seldom understands the
principles’ wishes;

77
Abigail Petersen, Survey of State’s Health Care Decision-Making Standards, 28 BIFOCAL 59 (April 2007),
http://www.abanet.org/aging/docs/Apr07BIFOCAL.pdf (accessed November 13, 2007).
78
Id.

18
 − even if they have done all the above, health care providers usually do not
know about the directive; and
− even if providers know one exists, it does not affect patient care.79

The Institute of Medicine in its seminal 1997 report on improving care at the end-
of-life likewise questioned the value of conventional advance directives:

The committee, while recognizing the value of advance directives,

questions the urgency of intensive efforts to universalize their use. In this
area of decision making at the end-of-life, the law’s favorite product -- the
legally binding document -- may sometimes stand in the way of, rather
than ease, the process, especially if these documents are naively viewed
as ultimate solutions to the difficulties of decision making. Rather, the
documents known as advance directives should be seen as a set of tools
useful in the ongoing process of advance care planning. 80

Finally, the transactional approach leads to unnecessary concerns about the

portability of advance directives across state lines. Most state advance directive
statutes explicitly recognize the validity of advance directives executed in other states, 81
although the recognition means only that the directive will be considered validly
executed. It does not mean that the out-of-state directive will be interpreted according
to the law of the state where it was executed. For both legal and practical reasons, it
will likely be interpreted according to the law of the state where it is implemented. With
the variability of limitations on authority, presumptions, and definitions of terms, the
original wishes of the individual could be thwarted. If state law has no express
recognition of out-of-state directives, the doctrine of comity supports such recognition.
But, the lack of specific authority itself may engender greater doubt and confusion
among medical providers, advisors, and the public.

There is virtually no empirical evidence to suggest portability is a large problem.

However, anecdotally, this author has found it to be a common question among older

79
See, e.g., Angela Fagerlin & Carl E. Schneider, Enough: The Failure of the Living Will, 34 The Hastings Center
Report 30-42 (March-April 2004); Peter H. Ditto, et. al, Advance Directives as Acts of Communication, 161 Arch.
Intern. Med. 421-430 (2001); E.J. Larson & T.A. Eaton, The Limits of Advance Directives: A History and
Assessment of the Patient Self-Determination Act, 32 Wake Forest L. Rev. at 278 (1997); J. Teno et al, Advance
Directives for Seriously Ill Hospitalized Patients: Effectiveness with the Patient Self-Determination Act and the
SUPPORT Intervention, 45 J. of the American Geriatrics Society 500-507 (1997); David Orentlicher, The Illusion of
Patient Choice in End-of-Life Decisions, 267 JAMA 2101-2104 (1992); Diane E. Hoffmann, Sheryl I. Zimmerman
& Catherine J. Tompkins, The Dangers of Directives or the False Security of Forms, 24 J. of Law, Medicine &
Ethics 5 (1996); Rebecca Dresser, Confronting the ‘Near Irrelevance’ of Advance Directives, 5 J. Clin. Ethics 55-56
(Spring 1994).
80
Institute of Medicine, Committee on Care at the End of Life, Approaching Death: Improving Care at the End of
Life (Marilyn J. Field & Christine K. Cassel, eds., Natl. Acad. Press 1997).
81
As of 2007, 42 states expressly recognize the validity of out-of-state directives, according to the legislative
summary of the ABA Commission on Law and Aging, at
http://www.abanet.org/aging/legislativeupdates/home.shtml (accessed November 13, 2007).

19
persons who attend programs on health care advance care planning. In such a highly
mobile society, the concern may affect many people.

The Communications Approach

In response to the experienced shortcomings of the transactional approach, an
alternative paradigm has emerged -- a communications approach. This paradigm
derives from the concept of advance care planning:

[A]dvance care planning is a broader, less legally focused concept than

that of advance directives. It encompasses not only preparation of legal
documents but also discussions with family members and physicians
about what the future may hold for people with serious illnesses, how
patients and families want their beliefs and preferences to guide
decisions…, and what steps could alleviate concerns related to finances,
family matters, spiritual questions, and other issues that trouble seriously
ill or dying patients and their families. 82

Advance care planning involves an iterative process over time to discern the
individual’s priorities, values, and goals of care and to engage a proxy and others who
will participate in the health care decision making process at any time in the future when
the individual is no longer able. 83 The call for an expanded approach to advance care
planning is by no means new, 84 but only fairly recently have its implications for public
policy, as reflected in advance directive laws, been directly addressed. The well-known
tract by Fagerlin and Schneider has called for the elimination of living wills and greater
emphasis on use of durable powers of attorney for health care. 85 Lo and Steinbrook
have called for radical simplification of these statutes:

82
Institute of Medicine, supra n. 80, at 198-199.
83
See also, Lauren G. Collins, Susan M. Parks, & Laraine Winter, The State of Advance Care Planning: One
Decade after SUPPORT, 23 Am. J. Palliat. Care 378-384, at 380 (2006); The President’s Council on Bioethics,
Taking Care: Ethical Caregiving in Our Aging Society at 214-216 (September 2005) at
http://www.bioethics.gov/reports/taking_care/index.html (accessed November 13, 2007); James A. Tulsky, Beyond
Advance Directives: Importance of Communication Skills at the End of Life, 294 JAMA 359-365 (July 20, 2005);
Bernard Lo & Robert Steinbrook, Resuscitating Advance Directives, 164 Arch. Intern. Med. 1501-06 (July 26,
2004); Joan M. Teno, Marguerite Stevens, Stephanie Spernak & Joanne Lynn, Role of Written Advance Directives in
Decision Making: Insights from Qualitative and Quantitative Data, 13(7) J. Gen. Intern. Med. 439-447 (1998);
Bernard J. Hammes & Brenda L. Rooney, Death and End-of-Life Planning in One Midwestern Community, 158
Arch Intern. Med. 383-390, at 390 (February 23, 1998).
84
In 1995, Muriel Gillick argued: “Advance planning for future illness should be broadened from medical care in
the event of incompetence to all medical care for the elderly. To plan effectively, patients need an assessment of
their overall medical condition: whether they are robust, frail, demented, or dying. They need to understand the
kinds of complications often engendered by aggressive treatment, given their underlying status. Given information
about their circumstances and their capacity to withstand medical interventions, patients, together with their
physicians, need to formulate broad goals for medical care.” Muriel R. Gillick, A Broader Role for Advance
Medical Planning, 123 Ann. Int. Med. 621-624 (October 15, 1995); see also Joan M. Teno & Joanne Lynn, Putting
Advance-Care Planning Into Action, 7 J. Clin. Ethics 205-213 (Fall 1996).
85
Angela Fagerlin & Carl E. Schneider, supra note 79, at 39.

20
 Legal requirements that were intended to protect patients may be
counterproductive. Requirements that written advance directives be
witnessed or notarized place burdens on patients who complete
them…Advance directives would be more useful if they emphasized
advance care planning, particularly discussions of end-of-life care with
physicians, rather than completing a legal document…

We suggest that such discussions between physicians and patients are at

the core of informed advance planning. Documentation of discussions is
important, but should not be so complicated as to discourage the
discussions themselves…Patients should be able to designate health care
proxies through oral statements to physicians. 86

While state advance directive law is far from the model advocated by Lo and
Steinbrook, the growing prominence of a communications approach is reflected in
incremental but real steps toward simplification of state law, especially with respect to
mandatory forms or language. As noted earlier, the model for simplification has been
the 1993 Uniform Health-Care Decisions Act, which has prompted a number of states to
combine disparate pieces of health care decisions provisions into comprehensive acts.
Another possible measure of simplification is to ask whether state law has become
uncomplicated enough to enable a single advance directive form to meet the statutory
requirements of all 50 states and the District of Columbia. The Five Wishes advance
directive provides one such measure.

In the last ten years, the Five Wishes advance directive, created by the
organization Aging with Dignity, Inc., has been the only form affirmatively marketed
nationally. 87 As a consultant to Aging with Dignity, this author compared Five Wishes to
the statutory requirements in all 50 states and the District of Columbia at the time it was
released for national distribution in 1978 and periodically since then to determine its
statutory compliance. 88 In the drafting of Five Wishes, Aging with Dignity sought to
create a personal, easy-to-use, and non-legalistic instrument. 89 The most prominent
barriers to the statutory compliance of Five Wishes in all jurisdictions have been the
statutory provisions for substantial compliance with a statutory form (i.e., mandatory

86
Bernard Lo & Robert Steinbrook, supra note 83, at 1502, 1504; see also, Charles P. Sabatino, De-Balkanizing
State Advance Directive Law, 13(1) Public Policy & Aging Report 1 (National Academy on an Aging Society,
Winter 2003); Charles P. Sabatino, Will My Wishes Be Known and Honored? Policy and Practice Perspectives, in
Improving End-of-Life Care: The Role of Attorneys General 35-46 (National Association of Attorneys General
2003); David Orentlicher, The Limitations Of Legislation, 53 Md. L. Rev. 1255 (1994).
87
Aging With Dignity, Inc., is a non-profit group that assists families with end-of-life issues. For more information,
see http://www.agingwithdignity.org (accessed on November 13, 2007).
88
Charles P. Sabatino, National Advance Directives: One Attempt to Scale the Barriers, 1 NAELA Journal 131-164
(Spring 2005).
89
In theory, one could incorporate every differing state requirement into one form with directions explaining which
options users should use. However, that approach would make such a document impossibly unwieldy and
complicated. A goal of Five Wishes has been simplicity and understandability.

21
forms) along with prescribed phraseology and requirements for including a prescribed
notice or warning. 90

In 1978 when Five Wishes was released for national distribution, it ostensibly met
the statutory requirements in 33 states and the District of Columbia. 91 By 2007, the
number of state laws friendly to Five Wishes had grown to 40. 92 The increase was
made possible by the trend toward simplification of state law.

Another instructive measure of simplification is a trend toward the statutory

recognition of oral advance directives documented in the patient’s record. Prior to the
1993 Uniform Health-Care Decisions Act, no state recognized oral advance directives.
Currently, 14 states recognize some form of oral directive. 93 Most of these states follow
the approach of the Uniform Health-Care Decisions Act which recognizes an oral
“instruction” documented in the record as valid and the appointment of a an orally
designated “surrogate” where the appointment is personally communicated to the
supervising health care provider. 94

A few of these 14 states recognize only oral instructional directives but not orally
designated surrogates. 95 A couple states require witnesses as a prerequisite to
validity. 96 Permitting oral directives affirms the form of communication most likely to
occur between physician and patient and provides a marker of state flexibility.

Apart from legislative changes, one aspect of advance directive practice deserves
notice. The tools available to the general public under the legal transactional paradigm
have primarily been statutory forms and the instructions for completing them and related
fact sheets. Indeed, these are still widely available from health care providers, medical
and bar associations, Offices on Aging, and on the Internet from groups such as the
National Hospice and Palliative Care Organization. 97 Beginning in the late 1990s, self-
help tools began to appear intended to help the user to understand the process of

90
Charles P. Sabatino, supra, note 88, at 150.
91
Aging with Dignity press release, Revolutionary National Living Will Unveiled: Document is Legally Valid in 33
States (October 22, 1998) (on file with author).
92
See Aging with Dignity announcement of new 2007 edition at http://www.agingwithdignity.org/fw2007.html
(accessed November 13, 2007).
93
Alaska Sta. §13.52.010(a) and 13.52.030(c) (West 2007); Cal. Prob. Code §§4623 and 4711 (West 2007); Conn.
Gen. Stat §19a-578 (West 2007); 16 Del. Code §2507(b) (West 2007); Fla. Stat. Ann. §§765.101(1) and
765.101(11)(a) (West 2007); Haw. Rev. Stat. §327E-3 and §327E-5 (2007); La. Rev. Stat. Ann. 40:1299.58.3(3)
(West 2007); 18-A Me. Rev. Stat. Ann. §5-802(a) (West 2007); Md. Health-Gen. Code Ann. §5-602(d)(1) (West
2007); Miss. Code Ann. §§41-41-205(1) and 41-41-211 (West 2007); N.M. Stat. Ann. §§24-7A-2(A) and 24-7A-5
(West 2007); Tenn. Code Ann. §68-11-1803 and -1806 (West 2007); Va. Code Ann. §54.1-2982 and 54.1-2983
(West 2007); Wyo. Stat. Ann. §35-22-403(a) (2007).
94
Uniform Health-Care Decisions Act §5. See, e.g., N.M. Stat. Ann. §§24-7A-2(A) and 24-7A-5 (West 2007).
95
See e.g., Conn. Gen. Stat §19a-578 (West 2007); Fla. Stat. Ann. §§765.101(1) and 765.101(11)(a) (West 2007);
La. Rev. Stat. Ann. 40:1299.58.3(3) (West 2007); 18-A Me. Rev. Stat. Ann. §5-802(a) (West 2007).
96
See e.g., Md. Health-Gen. Code Ann. §5-602(d)(1) (West 2007); Va. Code Ann. §54.1-2982 and 54.1-2983 (West
2007).
97
See http://www.caringinfo.org/stateaddownload (accessed November 13, 2007).

22
planning, the values and goals to be considered, and how to discuss these matters with
family, friends, proxy, and health care providers. These are essentially workbooks for
advance care planning. The written directive is still an intended outcome, but greater
emphasis is placed on the process, not the form.

Robert Pearlman and others at the Veterans Administration Medical Center in

Seattle produced one of the first of these in 1998, entitled Your Life Your Choices --
Planning for Future Medical Decisions: How to Prepare a Personalized Living Will. 98 A
small sampling of others that have appeared include:

• Caring Conversations Workbook, published by the Center for Practical Bioethics

(1999). 99

• Finding Your Way: A Guide for End-of-Life Medical Decisions, by Sacramento

Healthcare Decisions (1998). 100

• The Critical Conditions Planning Guide, by Georgia Health Decisions (1998). 101

• The Lawyer's Tool Kit for Health Care Advance Planning, and The Consumer’s
Tool Kit for Health Care Advance Planning by the ABA Commission on Law and
Aging (2000). 102

The Lawyer’s Toolkit is especially significant in its targeting of the legal profession
which assists a large proportion of individuals to complete advance directives. 103 The
Toolkit does not provide guidance on drafting, but instead gives lawyers tools they can
provide to clients to help them understand the planning process, self-reflect, and
discuss the subject with family, physician, and others. Use of resources such as these
by no means marks the end of the transactional legal model, but it does suggest a
growing awareness of the central role of communication at the center of the process.

Two other approaches suggestive of a communications approach but without much

evidence of effectiveness in the literature include the use of notice of an advance
directive on driver’s licenses and advance directive registries. Currently, at least six

98
Robert Pearlman, Helene Starks, K. Cain, W. Cole, D. Rosengren & D. Patrick, Your Life Your Choices --
Planning for Future Medical Decisions: How to Prepare a Personalized Living Will (Department of Veterans
Affairs 1998), product code PB98159437, available for order from the National Technical Information Service
http://www.ntis.gov (accessed November 13, 2007).
99
See http://www.practicalbioethics.org (accessed November 13, 2007).
100
See http://www.sachealthdecisions.org/publications.html (accessed November 13, 2007).
101
See http://www.critical-conditions.org, (accessed November 13, 2007).
102
See http://www.abanet.org/aging, (accessed November 13, 2007).
103
See e.g., Dorcas Mansell, Lewis Kazis, Leonard Glanz & Timothy Heeren, Roles of Physicians, Attorneys, and
Illness Experience in Advance Directives, 92(2) Southern Med. J. 197-203 (February 1999); John M. Roe et al.,
Durable Power of Attorney for Health Care: A Survey of Senior Center Participants, Archives of Internal Medicine
152 (1992): 292-96.

23
states provide for driver’s license notice of advance directives. 104 The purpose of these
are to institutionalize the dissemination of information about advance directives at the
time of driver’s license application or renewal and to enable drivers to include a notice of
having a directive on their licenses in much the same way that drivers may indicate their
intent to be an organ donor on their license. No evaluative literature on how these
notices function could be found.

A driver’s license notice fits conceptually well with an advance directive registry, so
that if an advance directive is indicated on a driver’s license, there would be a single
source to check for more information or a copy of the directive. At least eight private
entities store advance directives, either as a stand-alone service or within a range of
other services and products:

− America Living Will Registry (http://www.alwr.com);

− Choices Bank, established for the Missoula, Montana area but replicable
elsewhere (http://www.lifes-end.org/products/choices_bank.php);
− DocuBank (http://www.docubank.com/);
− MyHealthDirective.com -- A Nationwide Registry of Advance Healthcare
Directives (http://myhealthdirective.com);
− U.S. Living Will Registry (http://www.uslwr.com).
− Full Circle Registry (http://www.fullcircleregistry.com)
− GIFTS Advance Directive Registry of Gateway files Systems, Inc.
(http://www.giftsdirectives.com/Articles_pps/Giftsbooklet.pdf); and
− MedicAlert Foundation
(http://www.medicalert.com/Main/AdvanceDirectives.aspx).

Nine states have created their own advance directive registries, starting with
Louisiana in 1991 and California in 1999, followed by North Carolina (2002), Arizona
(2004), Montana and Vermont (2005) and Maryland, Idaho and Washington (2006). 105
In addition, the Nevada legislature passed an advance directive registry bill in its 2007
legislative session. 106 All are delegated to state agencies and all are or will be
accessible online. 107

104
625 Ill. Comp. Stat. §5/6-110 (West 2007); La. Rev. Stat. Ann. §32:410 (West 2007); Minn. Stat. Ann. §171.07
(West 2007); Mont. Code Ann. §61-5-301 (2007); S.D. Codified Laws §32-12-17.2 (2007); Vt. Stat. Ann. tit. 18,
§9719 (West 2007).
105
Ariz. Rev. Stat. Ann. §§36-3291 to -3297 (West 2007); Cal. Prob. Code Ann. §§4800-4802 (West 2007); Idaho
Code §39-4515 (West 2007); Md. Code Ann. [Health-Gen] §§5-619 to -626 (West 2007); Mont. Code Ann. §§50-9-
501 to -505 (2007); N.C. Gen. Stat. Ann. §§130A-465 to -471 (West 2007); Vt. Stat. Ann. tit. 18, §§9701, 9704,
9709, 9712, 9714, 9719 (West 2007); Wash. Rev. Code Ann. §70.122.130 (West 2007).
106
Nevada Laws Ch. 473 (A.B. 158).
107
California http://www.ss.ca.gov/ahcdr/; Arizona http://www.azsos.gov/adv_dir/; Idaho
http://www.sos.idaho.gov/general/hcdr.htm; Maryland Md. Code Ann. [Health-Gen.] §5-619 to -626 (2007);
Montana http://www.montana.edu/wwwpb/pubs/mt200602.html; North Carolina
http://www.secretary.state.nc.us/ahcdr/; Vermont http://healthvermont.gov/vadr/register.aspx.

24
 While both the driver’s license and registry strategies seek in concept to enhance
notice of, and access to, advance directives, there is little empirical evidence available
with which to assess their effectiveness in reaching these goals. It is difficult to predict
whether the strategies will actually increase awareness and usage, or whether the
impact may be to reinforce the document approach further rather than the
communication approach, or whether the public will ignore both.

Private national efforts have been tried for a number of years, but none have
achieved the critical mass to be truly national. With proxy directives, it may be that most
individuals will prefer to rely on their appointed proxy to step in when needed rather than
rely on a registry. And with the expansion of electronic medial records, the need for a
separate electronic registry may diminish. With respect to the latter issue, a 2005
legislative study on the need for a state registry by the State Advisory Council on
Quality Care at the End of Life concluded:

Before deciding whether it is worthwhile to create an advance directive

registry, especially given the substantial start-up and ongoing costs, the
Maryland General Assembly should consider the likelihood that there will
be national or statewide use of electronic medical records in the near
future. If there is a good chance that electronic medical records will
increasingly become part of routine practice, we are skeptical that the
creation of a separate advance directive registry is worthwhile. 108

108
Maryland State Advisory Council on Quality Care at the End of Life, Study on a Statewide Advance Directive
Registry (December 2005), available at http://oag.state.md.us/Healthpol/ADregistry.pdf.

25
V. A POSSIBLE NEXT STEP --THE POLST PARADIGM

As law and practice move toward a less standardized, more flexible,

communications approach, questions remains as to whether more flexibility in
communication will have any greater impact on actual treatment decisions than do
standardized advance directive forms. An emerging strategy that began in Oregon has
had a positive impact in bridging this gap between patient goals and preferences --
expressed directly, through an advance directive, or by a proxy -- and the actual plan of
care as reflected by physician orders.

The driver of medical interventions in hospitals and other health care settings
remains physician orders along with standard clinical procedures. A small but growing
number of states have recognized that patient wishes, no matter how communicated,
must be methodically factored into or translated into the medical decision making
engine. In the early 1990s, Oregon experimented with a protocol for seriously
chronically ill patients, called Physicians Orders for Life-Sustaining Treatment, or
POLST. 109 There are several ways to describe the POLST process, but relevant to this
review are three key tasks it aims to accomplish.

One, the use of POLST prompts a discussion between the health care provider
and patient or surrogate about key end-of-life care treatment options. The objective is to
discern the wishes of the patient in light of his or her current condition and the available
care options as explained by the treating health care provider.

Two, the patient’s wishes are incorporated into doctor’s orders that are recorded
on a unique, visible (bright pink in Oregon) POLST form that serves as a cover sheet to
the medical record and is reviewed periodically and as needed. The form covers several
key decisions that are common for seriously chronically ill patients. The Oregon form
addresses: CPR; the level of medical intervention desired in the event of emergency
(comfort only/do not hospitalize; limited; or full treatment); use of antibiotics; and the use
of artificial nutrition and hydration.

Three, providers must ensure that the POLST form travels with the patient
whenever transfers from one setting to another are made, thus, promoting continuity of
care decision making. 110

POLST is not an advance directive in the conventional sense but it is an advance

care planning tool that reflects the patient’s here-and-now goals for medical decisions
that could confront the patient in the immediate future. 111 It builds upon one’s advance

109
Susan W. Tolle et al., A Prospective Study of the Efficacy of the Physician Order Form for Life-Sustaining
Treatment, 46 Journal of the American Geriatrics Society 1 (1998).
110
Charles P. Sabatino, supra note 88, at 153.
111
The core requirements for a POLST protocol, as stated by the national POLST Paradigm Initiative can be found
at http://www.ohsu.edu/polst/corereqs.shtml (accessed November 14, 2007).

26
directive but can also function in the absence of an advance directive if the patient has
decisional capacity. Research on the Oregon experience with POLST has shown
positive outcomes. 112

Another way to understand the POLST paradigm is to compare it to out-of-hospital

DNR orders. POLST is a very similar process, except that it is not limited to the single
decision of resuscitation, and it does not presumptively call for withholding medical
interventions. It permits a full range of plans from comfort care only to full treatment.

Since Oregon’s development of the POLST form, Washington State and West
Virginia and parts of several other states have implemented similar protocols, 113 and
other states are considering following suit. In many ways, the POLST form represents a
sea change in advance care planning policy by making key provider communications
reflecting the plan of care highly visible and clinically routine and coupling elicitation of
treatment preferences with orders for care, rather than focusing solely on standardizing
patient communications.

The POLST paradigm has the additional advantage of being fairly adaptable in the
face of variable state law. For example, it has been implemented both with legislation
(as in West Virginia 114 ) and without legislation through provider collaboration (as in
Oregon 115 ). To the extent that surrogates are authorized to make health decisions
under state law, surrogates may complete POLST forms. POLST paradigms can be
implemented statewide and/or locally depending upon legal and clinical receptivity.
While POLST is a paper driven protocol, it is adaptable to electronic medical record
environments. Its primary limitation with respect to advance care planning is that, by
necessity, it focuses on immediate potential decisions and not on distant goal-based
planning.

112
Susan E. Hickman, Susan W. Tolle, Kenneth Brummel-Smith & Margaret M. Carley, Use of the POLST
(Physician Orders for Life-Sustaining Treatment) Program in Oregon Nursing Facilities: Beyond Resuscitation
Status 52 J. Amer. Geriatrics Soc. 1424-1429 (2004); Terri A. Schmidt, Susan E. Hickman, Susan W. Tolle & H. S.
Brooks, The Physician Orders for Life-Sustaining Treatment (POLST) Program: Oregon Emergency Medical
Technicians’ Practical Experiences and Attitudes, 52 J. Amer. Geriatrics Soc. 1430-1434 (2004). Additional
literature is summarized at http://www.polst.org (accessed November 14, 2007).
113
For more about the West Virginia form, see
http://www.hsc.wvu.edu/chel/ad_forms/WVHA_POST_form_disc.htm (accessed November 14, 2007); see also,
http://www.hsc.wvu.edu/chel/wvi/faq_post.htm (accessed November 14, 2007). The National POLST Paradigm
Initiative reports POLST programs in parts of Georgia, Kansas, Missouri, New Mexico, Utah, Washington, West
Virginia, Wisconsin, New York, and Pennsylvania. Information on POLST developments in all the states is
available at http://www.polst.org.
114
W.Va. Code Ann. §16-30-1 to -25 (West 2007).
115
See Susan E. Hickman, supra n. 112.

27
 VI. DEFAULT SURROGATES:
THE PREVAILING REALITY

The fourth wave or tide of legislation described earlier addresses a far more
common scenario in health care decision making: how are end-of-life decisions to be
made in the absence of any advance directive, or in the absence of an authorized
surrogate at all. Guardianship has not been seen as an effective solution for these
situations in general unless there is a dispute or special concern that merits such
review. The judiciary has had neither the resources nor the expertise for taking on
responsibility in all such cases. 116 Default surrogate laws have attempted to provide
baseline principles and processes for default surrogate decision making. But several
difficult issues have arisen in the structure and implementation of these laws.

The Order of Priority of Surrogates. The majority of existing family consent laws
provide a fixed hierarchy under which family members are authorized to act -- usually
starting with one's spouse and then next-of-kin, proceeding through some degree of
kinship. Seventeen states and the District of Columbia authorize a close friend as
surrogate but usually at or near the end of the priority list.117 Thus, most of these laws
provide a poor framework for domestic partners or non-traditional families. Only two --
Colorado and Hawaii -- avoid imposing any priority. These two states contain a list of
“interested persons” (made up of close family and friends) and require those available
among this group to decide who among them will serve as the surrogate. 118 The trade-
off for this greater accommodation to non-traditional families is the reality that everyone
will have to be in agreement among the group, or else the process will not work. On the
other hand, even in states with a prescriptive order of authority, any interested person
so inclined can use the judicial system to challenge the process. At best, default
surrogacy rules can only reflect what most but not all people may prefer.

Limited Scope of Authority. Only eight states follow the Uniform Health-Care
Decisions Act model that places no limitations on default surrogates. 119 Eighteen states
place limitations on the authority of a surrogate to consent to the forgoing of a

116
See generally Alan Meisel & Katy L. Cerminare, supra n. 14, at §§3.18 -3.24.
117
Alaska Stat. §13.52.030 (West 2007); Ariz. Rev. Stat. Ann. §36-3231 (West 2007); Colo. Rev. Stat. Ann. §15-
18.5-103 (West 2007); 16 Del. Code §2507 (West 2007); D.C. Code §21-2210 (2007); Fla. Stat Ann. §765.401
(West 2007); Haw. Rev. Stat. §§327E-2 & E-5 (2007); 755 Ill Comp. Stat. §40/25 (West 2007); 18-A Me. Rev. Stat.
Ann. §5-805(West 2007); Md. Health-Gen. Code Ann., §5-605 (West 2007); Miss. Code Ann. §§41-41-211; N.M.
Stat. Ann. 1978 §24-7A-5 (West 2007); N.Y. Pub. Health Law §2965 (McKinney 2007) [Limited to DNR orders];
N.D. Cent. Code §23-12-13 (2007); Tenn. Code Ann §68-11-1806 (West 2007); W.Va. Code Ann. §16-30-8 (West
2007); Wis. Stat. Ann. §50.06 (West 2007) [Limited to certain facility admissions]; Wyo. Stat. Ann. §35-22-406
(2007).
118
Colo. Rev. Stat. Ann. §15-18.5-101 to -1033 (West 2007); Haw. Rev. Stat. §§327E-2 & E-5 (2007).
119
Ga. Code Ann. §31-9-2 (West 2007); Idaho Code §39-4503 (West 2007); Ind. Code §16-36-1-1 to -14 (West
2007); S.C. Code Ann. §44-66-10 to -80 (2006); S.D. Codified Laws §34-12C-1 to -8 (2007); Wash. Rev. Code
Ann. §7.70.065 (West 2007); W.Va. Code Ann. §16-30-8 (West 2007); Wyo. Stat. Ann. §35-22-406 (2007).

28
life-sustaining treatment (or alternatively, nutrition and hydration). 120 Of these, Arizona
and Ohio entirely bar surrogates from authorizing the withholding or withdrawal of
nutrition and hydration, absent a court order. Most of the others place medical
preconditions on such decisions, usually certification of a terminal condition or
permanent unconsciousness.

Other restrictions prevent consent to certain mental health treatments, 121 or to

exceptional/controversial procedures (such as sterilization or abortion), 122 or to
decisions to limit any treatment when the patient is pregnant. 123 A few states limit their
surrogate consent law to a single type of decision. For example, New York’s default
surrogate law addresses only DNR decisions, 124 while the Kansas and Oklahoma laws
address only consent to medical research, 125 and Wisconsin’s law addresses only
admission to nursing homes and certain community-based residential facilities. 126

Certain ambiguities about the scope of authority of the surrogate also arise in
some of these laws by virtue of their legislative context. For example, the surrogacy
provision is contained in the state’s living will statute in seven states. Because these
statutes only focus on decisions made after a diagnosis of terminal condition or
permanent unconsciousness, 127 it is not clear that the authority of surrogates extends to
the full range of other, more routine medical decisions that need to be made for patients
lacking decisional capacity. In three states, the surrogate provisions are contained in
general informed consent statutes that predate legislative attention to end-of-life

120
Alaska Stat. §13.52.030 (West 2007); Ariz. Rev. Stat. Ann. §36-3231 (West 2007); Ark. Code Ann. §20-17-214
(West 2007); Colo. Rev. Stat. Ann. §15-18.5-101 to -1033 (West 2007); Conn. Gen. Stat. Ann. §19a-571 (West
2007); 16 Del. Code §2507 (West 2007); Haw. Rev. Stat. §§327E-2 & E-5 (2007); 755 Ill. Comp. Stat. §§40/1 to
40/25 (West 2007); Iowa Code Ann. §144A.7 (West 2007); Ky. Rev. Stat. §311.631 (West 2007); La. Rev. Stat.
Ann. §40:1299.58.5 (West 2007); 18-A Me. Rev. Stat. Ann. §5-805(West 2007); Mont. Code Ann. §50-9-106
(2007); Nev. Rev. Stat. Ann. §449.626 (West 2007); N.C. Gen. Stat. Ann. §90-322 (West 2007); Ohio Rev. Code
Ann. §2133.08 (West 2007); Or. Rev. Stat. Ann. §§127.505(12), 127.535(4), 127.635 (West 2007); Tenn. Code Ann
§68-11-1806 (West 2007).
121
Alaska Stat. §13.52.030 (West 2007); Ariz. Rev. Stat. Ann. §36-3231 (West 2007); Cal. Prob. Code §4711 to
4716 (West 2007); D.C. Code §21-2210 (2007); Fla. Stat Ann. §765.401 (West 2007); 755 Ill. Comp. Stat. §40/25
(West 2007); 18-A Me. Rev. Stat. Ann. §5-805 (West 2007); Md. Health-Gen. Code Ann. §5-605 (West 2007);
Miss. Code Ann. §§41-41-211 & 227(5); N.M. Stat. Ann. 1978 §24-7A-5 (West 2007); N.D. Cent. Code §23-12-13
(2007); Tenn. Code Ann. §68-11-1806 (West 2007); Va. Code Ann. §54.1-2986 (West 2007).
122
D.C. Code §21-2210 (2007); Fla. Stat Ann. §765.401 (West 2007); 755 Ill. Comp. Stat. §40/25 (West 2007);
N.D. Cent. Code §23-12-13 (2007) ; Va. Code Ann. §54.1-2986 (West 2007).
123
Ark. Code Ann. §20-17-214 (West 2007); Conn. Gen. Stat. Ann. §19a-571 (West 2007); 16 Del. Code §2507
(West 2007); Fla. Stat Ann. §765.401 (West 2007); Iowa Code Ann. §144A.7 (West 2007); Mont. Code Ann. §50-9-
106 (2007); Nev. Rev. Stat. Ann. §449.626 (West 2007); Ohio Rev. Code Ann. §2133.08 (West 2007); 20 Pa. Cons.
Stat. Ann. §5461 (West 2007); Tex. [Health & Safety] Code Ann. §166.039 (Vernon 2007); Utah Code Ann. §75-2-
1105, -1105.5 & -1107 (West 2007).
124
N.Y. Pub. Health Law §2965 (McKinney 2007).
125
Kan. Stat. Ann. §65-4974 (2006); Okla. Stat. Ann. tit. 63, §3102A (West 2007).
126
Wis. Stat. Ann. §50.06 (West 2007).
127
Ark. Code Ann. §20-17-214 (West 2007); Iowa Code Ann. §144A.7 (West 2007); La. Rev. Stat. Ann.
§40:1299.58.5 (West 2007); Mont. Code Ann. §50-9-106 (2007); Nev. Rev. Stat. Ann. §449.626 (West 2007); N.C.
Gen. Stat. Ann. §90-322 (West 2007); Ohio Rev. Code Ann. §2133.08 (West 2007).

29
decision making. 128 These laws refer only to who may consent to needed treatment
and do not address refusals of consent. A narrow reading of these statutes could
unduly restrict the authority of a surrogate; however, since the authority to consent is
illusory without the ability to say no, these laws should be sufficient to authorize
surrogates to withhold treatments, too.

Handling of Disagreements. Where there are multiple surrogates, such as in the

case where there are multiple adult children authorized as decision makers, the issue of
how to resolve disputes among the surrogates may arise. The most common approach
is to permit the majority position to prevail, at least among adult children, if there is a
majority. 129 However, a practical question that does not appear to have been the
subject of research is whether providers will actually accept a majority decision in the
face of a vocal or angry opposition by others. Defensive medicine instincts suggest not.
Four states require the unanimous consent of all members in the same priority level. 130

Delaware and Maryland provide for referral to an institutional ethics or advisory

committee as an option in the face of dispute; 131 and Maine provides that the health
care provider “may refer the members of the class or classes to a neutral third party for
assistance in resolving the dispute.” 132 Many simply do not specify what is to
happen. 133 Thus, where disputes among authorized surrogates cannot be mediated,
recourse to the courts may be the only option.

Lack of Available Surrogate (the “unbefriended patient”). Patients without a natural

surrogate have been labeled “unbefriended” by some researchers. 134 These are
patients who frequently have been socially isolated much of their lives, or they have
simply outlived their family and social support network. The majority of these patients
are encountered in hospitals or nursing homes, and frequently have multiple chronic
128
Ga. Code Ann. §31-9-2 (West 2007); N.D. Cent. Code §23-12-13 (2007); Wash. Rev. Code Ann. §7.70.065
(West 2007).
129
Alaska Stat. §13.52.030 (West 2007); Ariz. Rev. Stat. Ann. §36-3231 (West 2007); Ark. Code Ann. §20-17-214
(West 2007); Fla. Stat Ann. §765.401 (West 2007); 755 Il. Comp. Stat. §40/1 to 40/25 (West 2007); Iowa Code
Ann. §144A.7 (West 2007); Ky. Rev. Stat. §311.631 (West 2007); 18-A Me. Rev. Stat. Ann. §5-805 (West 2007);
Miss. Code Ann. §§41-41-203(s), -211, & -215(9); Mont. Code Ann. §50-9-106 (2007); Nev. Rev. Stat. Ann.
§449.626 (West 2007); N.M. Stat. Ann. 1978 §24-7A-5 (West 2007); N.C. Gen. Stat. Ann. §90-322 (West 2007);
Ohio Rev. Code Ann. §2133.08 (West 2007); Or. Rev. Stat. Ann. §§127.505(12), 127.535(4) & 127.635 (West
2007); 20 Pa. Cons. Stat. Ann. §5461 (West 2007); Utah Code Ann. §75-2-1105, -1105.5 & -1107 (West 2007); Va.
Code Ann. §54.1-2986 (West 2007); Wyo. Stat. Ann. §35-22-406 (2007).
130
La. Rev. Stat. Ann. §40:1299.58.5 (West 2007); S.C. Code Ann. §44-66-10 to -80 (2006); S.D. Codified Laws
§34-12C-1 to -8 (2007); Wash. Rev. Code Ann. §7.70.065 (West 2007).
131
16 Del. Code §2507(b)(8) (West 2007); Md. Health-Gen. Code Ann., §5-605(b)(1) (West 2007).
132
18-A Me. Rev. Stat. Ann. §5-805(e) (West 2007).
133
Ala. Code 1; 75 §22-8A-11 & -6 (2007); Conn. Gen. Stat. Ann. §1, a-571 (West 2007); D.C. Code §21-2210
(2007); Ga. Code Ann. §31-9-2 (West 2007); Idaho Code §39-4503 (West 2007); Ind. Code §16-36-1-1 to -14 (West
2007); Mich. Comp. Laws Ann. §§333.5653(g) & .5655(b) (West 2007); N.D. Cent. Code §23-12-13 (2007); Tex.
[Health & Safety] Code Ann. §166.03 (Vernon 2007).
134
Murial R. Gillick, Medical Decision-making for the Unbefriended Nursing Home Resident, 1(2) J. Ethics, L &
Aging 87 (1995); Marshall B. Kapp, Surrogate Decision-Making for the Unbefriended: Social and Ethical
Problem, Legal Solution? 1 J. Ethics, L. & Aging 83 (1995).

30
conditions that may require difficult decisions regarding major medical or life-sustaining
treatments. It is difficult to estimate accurately how many individuals fall into this status,
but a 2003 report by the ABA estimated that about 3-4 percent of nursing home
residents are unbefriended. 135

Only eight states address non-judicial avenues of decision making for

unbefriended patients, and one of these (Mississippi) explicitly authorizes only consent
and expressly proscribes withholding. 136 North Carolina and Oregon defer to the
attending physician as decision maker. 137 Alabama likewise defers to the attending
physician but requires concurrence of an institutional ethics committee. 138 Tennessee
and Texas do likewise but, alternatively, permit concurrence from a second
disinterested physician if an ethics committee is not available. 139

Florida permits the provider’s ethics committee to select a licensed clinical social
worker who is a graduate of a court-approved guardianship program to serve as default
decision maker. 140 Finally, West Virginia authorizes a state agency to serve as default
decision maker:

Any other person or entity, including, but not limited to, public agencies,
public guardians, public officials, public and private corporations and other
persons or entities which the department of health and human resources
may from time to time designate in rules promulgated pursuant to chapter
29.a of this code. 141

Investigating non-judicial mechanisms for health care decision making on behalf of

unbefriended patients, the authors of the ABA report confirmed that very few state laws
address the needs of unbefriended elderly patients. Of those that do, the laws generally
fall into four categories: (1) health care consent statutes specifying who can consent to
treatment, often authorizing attending physicians (as described above); (2) creation of
volunteer committees to make decisions, usually for mentally retarded or mentally ill
individuals; (3) court processes authorizing limited consent to treatment; and (4) public
guardianship. 142 The last option was noted as significantly insufficient because public
guardianship programs are costly and too often overburdened and under-funded. The
report acknowledges that all of these mechanisms have drawbacks but move in the
right direction. In addition, the report notes that some hospitals and nursing homes are
beginning to develop innovative and patient-centered systems to address the needs of

135
See, Naomi Karp & Erica Wood, Incapacitated and Alone: Health Care Decision-Making for the Unbefriended
Elderly (ABA July 2003).
136
Miss. Code Ann. §§41-41-215(9) (West 2007).
137
N.C. Gen. Stat. Ann. §90-322(b) (West 2007); Or. Rev. Stat. Ann. §127.635(3) (West 2007).
138
Ala. Code 1975 §22-8A-11(d)(7) (2007).
139
Tenn. Code Ann §68-11-1806(c)(5) (West 2007); Tex. [Health & Safety] Code Ann. §166.039(e) (Vernon 2007).
140
Fla. Stat Ann. §765.401(1)(h) (West 2007).
141
W.Va. Code Ann. §16-30-8(a)(7) (West 2007).
142
Naomi Karp & Erica Wood, supra n. 135, at 19.

31
unbefriended patients. Often, however, when state laws fail to authorize clear and
ethical mechanisms to deliver or discontinue care for unbefriended patients,
practitioners and institutions have to “fly below the radar screen” in making decisions. 143

The report includes consensus recommendations from an expert symposium

addressing the following areas:

− using preventive and “pre-crisis” approaches such as educating at-risk

individuals about advance directives and developing de facto surrogacy
relationships through “buddy systems;”
− designing thoughtful mechanisms for decision making that may be internal
to a facility (e.g., interdisciplinary ethics committees) or external surrogate
decision making committees;
− incorporating key patient-centered characteristics into a well-designed
system; and
− utilizing judicial remedies as a last resort. 144

143
Id. at 32-33.
144
Id. at 42-44.

32
 VII. THE FEDERAL ROLE

Health care decision making has traditionally been considered a province of state
law, not federal. Federal law generally defers to state substantive law in this area,
including the selection and authority of chosen and default surrogates. For example,
federal nursing home regulations provide:

In the case of a resident adjudged incompetent under the laws of a state

by a court of competent jurisdiction, the rights of the resident are
exercised by the person appointed under state law to act on the resident’s
behalf.

In the case of a resident who has not been adjudged incompetent by the
state court, any legal surrogate designated in accordance with state law
may exercise the resident’s rights to the extent provided by state law. 145

In addition, the privacy rule under the Health Insurance Portability and
Accountability Act (HIPAA) of 1996 146 likewise provides that those authorized under
state law to make health care decisions for another must be treated as their legal
representatives for the purpose of information access and disclosure. 147

However, Congress has taken action to mandate the availability of certain

information and education under the 1990 Patient Self-Determination Act, described
above; and to regulate access to health care information by others under HIPAA, as
noted.

In addition to the above, Congress made a brief foray into an individual state
court dispute involving the controversial case of Terri Schiavo when it enacted a bill
(S.653 -- Bill for the Relief of the Parents of Terri Schiavo) on March 21, 2005, to
authorize federal review of her case. However, the criticism and controversy that
Congress generated by its action quickly caused it and the Administration to cool their
activism after Terri Schiavo’s death ten days later.

Finally and most directly related to advance directives, Congress in 1996 did
enact a federal advance directive, applicable specifically to military personnel:

145
42 C.F.R. §483.10(a)(3) & (4).
146
Public Law 104-191 (1996). The privacy rule can be found at 45 CFR Parts 160 and 164, and extensive
explanatory information about the rule is available at http://www.hhs.gov/ocr/hipaa.
147
42 CFR Section 164.502(g)(2).

33
 10 U.S.C.A. §1044c. Advance medical directives of members and
dependents: requirement for recognition by states
(a) Instruments to be given legal effect without regard to state law. --
An advance medical directive executed by a person eligible for
legal assistance --
(1) is exempt from any requirement of form, substance,
formality, or recording that is provided for advance medical
directives under the laws of a state; and
(2) shall be given the same legal effect as an advance medical
directive prepared and executed in accordance with the laws
of the state concerned.
(b) Advance medical directives. -- For purposes of this section, an
advance medical directive is any written declaration that --
(1) sets forth directions regarding the provision, withdrawal, or
withholding of life-prolonging procedures, including hydration
and sustenance, for the declarant whenever the declarant
has a terminal physical condition or is in a persistent
vegetative state; or
(2) authorizes another person to make health care decisions for
the declarant, under circumstances stated in the declaration,
whenever the declarant is incapable of making informed
health care decisions.

In light of the present nationwide challenges to improving advance care planning

policy and practice, it is timely to re-examine the appropriate role of the Federal
Government with respect to improving the tools and processes of advance care
planning and surrogate decision making. Recommendations for possible avenues of
federal action are included in a separate document.

Any federal strategy for action should take into account the central trend in state
policy described in this overview -- the movement of the states away from a legal
transactional mode of advance planning toward a communications model. While, much
of the evaluative scholarly literature is supportive of that trend, many barriers persist. In
some respects, the goal of this movement has been essentially to get the law out of the
way of good planning (i.e., making it simpler, less legalistic in requirements, and more
adaptable to the mode of communicating and decision making natural to the individual).
At the same time, concerns about potential abuse cannot be blithely discarded. While
no significant patterns of abuse have been identified in the research literature, the fact
that these decisions do indeed involve life and death consequences, the protection of
vulnerable persons will remain a challenge.

34
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information to:

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Office of Disability, Aging and Long-Term Care Policy
Room 424E, H.H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201
FAX: 202-401-7733
Email: [email protected]

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