INTRODUCTION
Amici Curiae Disability Rights Network of Pennsylvania, The Arc of Pennsylvania,
Achieva, Vision for Equality, Liberty Resources, Inc., Pennsylvania Developmental Disabilities
Council, and Not Dead Yet submit this Brief in support of Appellees, Department of Public
Welfare and David Hockenberry. Pennsylvania has a paramount interest in preserving and
protecting the fundamental right to life for all of its citizens. David Hockenberry, and all persons
with intellectual and other disabilities, should not be denied life-preserving medical treatment
that would be routinely provided to persons without disabilities. The Superior Court properly
held that plenary guardians do not have the authority to decline life-preserving treatment for lifelong incapacitated persons who are not in an end-of-life situation. To the extent, however, that
this Court addresses, as the Superior Court did, whether a court can ever consider whether a
guardian has such authority, the Superior Court’s decision requires modifications to assure that
incapacitated persons receive essential due process protections when their fundamental right to
life is in jeopardy.
INTEREST OF AMICI CURIAE
The Disability Rights Network of Pennsylvania (DRN) is a non-profit corporation
designated by the Commonwealth of Pennsylvania since the mid-1970s to protect and advocate
for the rights of persons with disabilities pursuant to federal law, including the Developmental
Disabilities Assistance and Bill of Rights Act, 42 U.S.C. § 15043. DRN’s mission is to protect,
advance, and advocate for the human, civil, and legal rights of Pennsylvanians with disabilities.
DRN each year provides legal, advocacy, and other services to thousands of persons with
disabilities and their families.
The Arc of Pennsylvania (Arc-PA) is a statewide, grassroots-driven, non-profit
corporation that provides advocacy and resources for individuals with intellectual and
developmental disabilities and their family members. Arc-PA was formed in 1949 and is
affiliated with The Arc of the United States and 36 local chapters across Pennsylvania. Arc-PA’s
mission is to work to include all children and adults with intellectual and developmental
disabilities in every community and to advance and protect the civil rights of citizens with
intellectual and developmental disabilities.
Achieva, formerly known as Arc-Allegheny, is a non-profit corporation that is western
Pennsylvania’s largest provider of comprehensive supports and services for people with
disabilities and their families. Each year, Achieva provides advocacy and other supports and
services to approximately 10,000 children and adults with disabilities and their families. The
services provided include early intervention services for infants and toddlers; educational
advocacy and family support; transition services for young adults; residential and vocational
services for adults; in-home supports; camp and recreation services; long-term planning and
special needs trusts; and protective services for older adults. Achieva devotes considerable
resources each year to provide advocacy and other assistance in support of its mission to ensure
that persons with intellectual and other disabilities are fully included and not subject to
discrimination.
Vision for Equality (VFE) is a non-profit corporation that works to assist and empower
people with disabilities and their families to seek quality and satisfaction in their lives as well as
equal access to supports and services. VFE provides advocacy and other services on behalf of
persons with intellectual and other disabilities and their families. VFE works to assure full
community inclusion for persons with intellectual and other disabilities, including the right to
2
obtain necessary supports and services and to be treated with the respect and dignity to which all
are entitled.
Liberty Resources, Inc. (LRI) is the Center for Independent Living for the Philadelphia
area. LRI is a non-profit, consumer-driven organization that advocates for and works with
persons with disabilities to ensure their civil rights and equal access to all aspects of community
life. More than 50 percent of the members of LRI’s Board of Directors and employees are
persons with disabilities.
The Pennsylvania Developmental Disabilities Council (DDC) consists of people with
disabilities, their family members, representatives of five Pennsylvania cabinet secretaries, and
others, all of whom are appointed by the governor pursuant to federal law. 42 U.S.C. §§1502115029. DDC works through grants and direct activity to engage in advocacy, systems change,
and capacity building on behalf of Pennsylvanians with developmental disabilities.
Not Dead Yet is a national grassroots organization of people with disabilities formed in
response to the increasing popularity of, and laws permitting, physician-assisted suicide, as well
as non-voluntary and involuntary passive euthanasia in the United States and around the world.
Not Dead Yet’s mission is to advocate against legalization of physician-assisted suicide and
euthanasia, and to bring a disability-rights perspective and awareness of the effects of
discrimination to the legal and sociological debate around these issues.
3
SUMMARY OF ARGUMENT
Act 169 of 2006 and the guardianship statute, construed together, bar plenary guardians
from refusing life-preserving treatment for incapacitated persons who are not in an end-of-life
situation. The guardianship statute expressly acknowledges that the Pennsylvania General
Assembly, through other statutory enactments, can circumscribe the rights of guardians to make
decisions for incapacitated persons, and the law’s list of examples of such enactments is not
exhaustive. Act 169, enacted after the guardianship statute, establishes a comprehensive
framework by which health care decisions can be made by third-parties for individuals who are
incompetent to make those decisions. The plain language of Act 169 allows only a competent
person to refuse life-preserving treatment. Accordingly, Act 169 does not authorize plenary
guardians to unilaterally decline life-preserving treatment for life-long incapacitated persons, like
Mr. Hockenberry, who are incompetent to make medical decisions and who are not in end-of-life
situations. Since Act 169 is a later-enacted and specific statute that controls substitute health
care decision-making, the more general guardianship statute must yield to it.
Assuming that an Orphans’ Court could grant a guardian the power to decline lifepreserving medical treatment for an incapacitated person who does not have an end-of-life
condition, this Court should adopt and expand the Superior Court’s protections for incapacitated
persons faced with this situation. Due process requires that individuals be afforded appropriate
protections before they are deprived of any fundamental right, such as the right to life. While the
Superior Court rightly placed a heavy burden of proof on a guardian who is seeking this
extraordinary authority, a court in these cases also must assure that essential due process
protections are in place. At minimum, a court should appoint qualified and independent counsel
for the incapacitated person to present the person’s interest in remaining alive and require an
4
independent evaluation to assess the incapacitated person’s current and future medical
condition.
Finally, the decision in this case should be consistent with federal and state policy that
promotes the well-being of and values persons with disabilities in the same manner and to the
same extent as citizens without disabilities. Pennsylvania law must assure that persons with
disabilities are treated with the same medical care and attention as persons without disabilities
would be in the same circumstances. Affirming the Superior Court’s decision precluding
guardians from withholding life-preserving treatment for individuals with disabilities who are
not in an end-of-life situation effectively protects such individuals from disability-based
discrimination and furthers the state’s paramount interest in protecting life.
ARGUMENT
I. ACT 169, CONSTRUED WITH THE GUARDIANSHIP LAW,
BARS PLENARY GUARDIANS FROM REFUSING
LIFE-PRESERVING TREATMENT FOR INCAPACITATED PERSONS.
A. The Guardianship Law Expressly Recognizes that
Other Pennsylvania Laws Can Limit the Powers of Guardians.
Pennsylvania's guardianship statute, 20 Pa.C.S.A. Ch. 55, recognizes that "every
individual has unique needs and differing abilities" and, as such, is designed to "permit[]
incapacitated persons to participate as fully as possible in all decisions which affect them" and to
"protect[] their rights ...." 20 Pa.C.S.A. § 5502.1 Guardians of the person thus have the "duty ...
to assert the rights and best interests of the incapacitated person" and to respect "to the greatest
1
The guardianship statute defines "incapacitated person" as "an adult whose ability to
receive and evaluate information effectively and communicate decisions in any way is impaired
to such a significant extent that he is partially or totally unable to manage his financial resources
or to meet essential requirements for his physical health and safety." 20 Pa.C.S.A. § 5501.
5
possible extent" the expressed wishes and preferences of the incapacitated person. 20 Pa.C.S.A.
§ 5521(a).
The guardianship statute does not confer unbridled authority on guardians, even plenary
guardians of the person.2 For example, the guardianship statute provides that, absent a court
order following a hearing and specific findings of fact, a guardian may not consent on behalf of
the incapacitated person to an abortion, sterilization, psychosurgery, electroconvulsive therapy,
removal of a healthy body organ, or experimental medical procedures or to prohibit the marriage
or consent to the divorce of an incapacitated person. 20 Pa.C.S.A. § 5521(d). In addition, the
guardianship law prohibits a guardian from securing a court order to authorize any action that is
"controlled by other statute, including but not limited to" admitting the individual to an inpatient
psychiatric facility or state institution for people with mental retardation or consenting to the
relinquishment of the person's parental rights. 20 Pa.C.S.A. § 5521(f) (emphasis added).
Accordingly, the guardianship statute acknowledges that the Pennsylvania General
Assembly, through other statutory enactments, can circumscribe the rights of guardians to make
decisions for incapacitated persons. The guardianship law's list of statutory enactments that limit
a guardian's powers is not exhaustive. Rather, by using the phrase "including but not limited to"
in 20 Pa.C.S.A. § 5521(f), the Legislature made clear that other statutes not specifically
identified in that section could limit a guardian’s authority. See St. Elizabeth's Child Care
Center v. Dep't of Public Welfare, 600 Pa. 131, 136, 963 A.2d 1274, 1276 (2009) ("When the
words of a statute are clear and free from all ambiguity, they are presumed to be the best
2
The guardianship statute allows a court to appoint a guardian of the person, a guardian
of the estate, or both and to make the guardian either a plenary guardian or a limited guardian.
See 20 Pa.C.S.A. § 5512.1.
6
indication of legislative intent.").3 Act 169 of 2006, as discussed more fully in the following
section, is an instance in which the Legislature has acted to limit the authority of guardians to
make health care decisions for incapacitated persons. As such, the guardianship law -- by the
express terms of 20 Pa.C.S.A. § 5521(f) -- must yield to those limits established by Act 169.
B. Act 169 Precludes Substitute Decision-Makers from Declining
Life-Preserving Treatment for Individuals Who Did Not
Authorize Such Decisions When Competent To Do So.
1. Act 169's Legal Framework.
Act 169 of 2006, 20 Pa.C.S.A. Ch. 54, establishes the comprehensive framework for
substitute health care decision-making for individuals who are "incompetent" to make their own
health care decisions.4 Act 169 recognizes two mechanisms for substitute health care decisionmaking for incompetent persons: (1) advance health care directives; and (2) health care
representatives.
Advance Health Care Directives -- An advance health care directive is a living will,
health care power of attorney, or combination of those two documents. 20 Pa.C.S.A. § 5422. An
advance health care directive is created by an individual (principal) when he or she is competent
3
Appellant asserts that the statutory rule of construction "expressio unius est exclusio
alterius" requires this Court to hold that the guardianship statute's identification of certain
prohibited powers means that guardians have authority to do anything else with no constraints.
Appellant's Br. at 6-7. This rule of statutory construction has no bearing when the legislative list
is not exhaustive, but, rather, is merely a listing of examples. See Chevron U.S.A, Inc. v.
Echazabal, 536 U.S. 73, 80 (2002). The statutory language of exclusiveness required for
application of the expressio unius maxim is absent here given the Legislature's use of the phrase
"including but not limited to" in 20 Pa.C.S.A. § 5521(f).
4
Act 169 defines "incompetent" to mean a condition that, in the opinion of the individual's health care provider, renders the individual unable to: (1) understand the potential material
benefits, risks, and alternatives involved in a specific health care decision; (2) make that health
care decision on his own; or (3) communicate that health care decision to another person. 20
Pa.C.S.A. § 5422.
7
to do so. The directive sets forth the parameters for health care decisions to be made in the event
the principal becomes incompetent. The key difference between a health care power of attorney
and a living will is that the former can govern all types of health care decisions when a person is
incompetent, while the latter is limited to end-of-life health care decisions that are made when a
person has an "end-stage medical condition" or is "permanently unconscious." 20 Pa.C.S.A. §§
5443(a), 5453.5 A health care power of attorney must identify a "health care agent" to carry out
the principal's instructions, 20 Pa.C.S.A. §§ 5453(a), 5455, 5456, while a living will need not do
so because it provides physicians with detailed instructions as to what end-of-life procedures and
care the principal does and does not want. 20 Pa.C.S.A. § 5447.
Health Care Representatives -- In Act 169, the Legislature recognized that there will be
situations in which people have not provided written instructions for substitute health care
decision-making, either because a person was never competent to make an advance health care
directive or because he became incompetent without reducing his wishes to writing. In these
situations, Act 169 authorizes certain family members and other individuals who know the
incompetent person to act as "health care representatives" to make certain health care decisions.
20 Pa.C.S.A. § 5461. Health care representatives, however, are only authorized to make end-oflife health care decisions. 20 Pa.C.S.A. § 5461(b).
In sum, Act 169 establishes the legal framework by which health care decisions can be
made by third-parties for individuals who are or become incompetent to make those decisions.
There is nothing in Act 169 that allows guardians – qua guardians – to withhold life-preserving
5
Act 169 defines both "end-stage medical conditions" and "permanently unconscious."
20 Pa.C.S.A. § 5422. Although the term “end-of-life” has sometimes been ill-defined and overbroadly applied, for purposes of brevity, Amici use the phrase "end-of-life" to refer to individuals
who meet the Act 169 criteria for having an end-stage medical condition or being permanently
unconscious.
8
treatment for persons who are not at the end of life. Since Act 169 controls substitute health care
decision-making, in the event of a conflict, the guardianship law must yield to it. 20 Pa.C.S.A. §
5521(f); see also 1 Pa.C.S.A. § 1933 (a later-enacted specific statute must prevail over a more
general statute when the statutes are in conflict).
2. Act 169 Explicitly Allows Only Competent Persons
to Make Decisions to Refuse Life-Preserving Treatment.
Act 169 not only details who can make substitute health care decisions for incompetent
persons, but also exclusively delineates the circumstances under which life-preserving treatment
can be withheld from incompetent persons who do not have end-of-life conditions.6 Specifically,
Act 169 provides:
Health care necessary to preserve life shall be provided to an
individual who has neither an end-stage medical condition nor is
permanently unconscious, except if the individual is competent and
objects to such care or a health care agent objects on behalf of the
principal if authorized to do so by the health care power of attorney
or living will.
20 Pa.C.S.A. § 5462(c)(1). Act 169 thus authorizes health care providers to refuse lifepreserving treatment to an individual who does not have an end-of-life condition only if one of
the following circumstances exists: (1) a competent individual refuses life-preserving care; or
(2) a health care agent refuses life-preserving care on behalf of the principal who has become
6
Amici use the phrase "life-preserving treatment" to describe treatment necessary to save
the life of an individual who is not in an end-of-life situation, i.e., someone like Mr. Hockenberry
who does not have an end-stage medical condition or is not permanently unconscious. As
correctly noted in the Brief of Amici Pennsylvania Medical Society, et al., (Medical Amici), Act
169 uses the term "life-sustaining" treatment to denote care to persons with end-of-life
conditions. As such, the provision of care needed to save the life of a person who does not have
an end-of-life condition, as in Mr. Hockenberry's case, is more appropriately referred to as "lifepreserving" treatment. Medical Amici Br. at 3 n.3.
9
incompetent if the principal's advance health care directive -- written when he was competent -specifically authorizes such a decision.
The unambiguous language of 20 Pa.C.S.A. § 5462(c)(1) allows only a competent person
to make a decision to refuse life-preserving treatment in the absence of an end-of-life condition.
In authorizing only competent persons -- whether directly or through health care agents acting
through advance health care directives -- to refuse life-preserving treatment when they are not in
end-of-life situations, the Legislature barred other forms of substitute decision-making for
incompetent persons in such circumstances. Any doubt about this construction of Act 169 is
removed by the Legislative findings and intent, which state that the Act is not intended to
"condone, authorize or approve mercy killing, euthanasia or aided suicide" and that it should not
be construed to "permit any affirmative or deliberate act or omission to end life other than as
defined in this chapter." 20 Pa.C.S.A. §§ 5423(a)(2)-(3).
Accordingly, Act 169 prohibits guardians from declining life-preserving treatment for
life-long incapacitated persons, like Mr. Hockenberry, who are incompetent to make medical
decisions and who are not in end-of-life situations.7 The Legislature clearly determined that such
an extreme decision -- the refusal to provide care to prevent an unnecessary death -- should only
be made by a competent individual and is not appropriate for a substitute decision-maker.8
7
Of course, if the incapacitated person had executed a valid advance health care
directive when competent, identified the guardian as his health care agent, and indicated that he
did not desire life-preserving treatment even in non-end-of-life situations, the guardian would
have authority under Act 169 to implement the incapacitated person's direction.
8
In contrast, substitute decision-makers can refuse life-sustaining treatment for individuals who are in end-of-life situations even when the individuals have not explicitly authorized
them to do so through advance health care directives. Health care representatives are authorized
by Act 169 to make health care decisions for people who are incompetent and at the end-of-life
even if they did not execute an advance health care directive. See discussion, supra, at 8. Thus,
10
3. Act 169's Provisions Relating to Guardians Do
Not Support Appellant's Arguments.
Act 169 is not silent as to the role of court-appointed guardians for incapacitated persons.
The statute recognizes that, in some instances, a guardian may be appointed for an incapacitated
person who, prior to becoming incapacitated, executed an advance health care directive that
identifies a health care agent to carry out the individual's wishes. 20 Pa.C.S.A. § 5460. In such a
circumstance, Act 169 provides that the guardian has "the same power to revoke or amend the
appointment of a health care agent that the principal would have if the principal were not
incapacitated but [the guardian] may not revoke or amend other instructions in an advance
health care directive absent judicial authorization." 20 Pa.C.S.A. § 5460(a) (emphasis added).
In other words, Act 169 only permits a guardian to change the health care agent designated by
the principal in an advance health care directive, but bars a guardian from unilaterally changing
the principal's health care instructions to the agent.
Far from supporting Appellant’s position, 20 Pa.C.S.A. § 5460(a) re-emphasizes that only
a competent person -- not a health care representative, a health care agent acting contrary to the
instructions in an advance health care directive, or a guardian -- has the right to decline lifepreserving treatment. Cf. In re Dorone, 517 Pa. 3, 9, 534 A.2d 452, 455 (1987) (holding that
parents, other relatives, or other persons who know an individual are authorized to make health
care decisions for incompetent persons at the end of life. Guardians would certainly count as
"individuals who have knowledge of the principal's preferences and values" so as to serve as
health care representatives under Act 169. 20 Pa.C.S.A. § 5461(d)(1)(vi). In addition, this Court
in In re Fiori, 543 Pa. 592, 605-06, 673 A.2d 905, 912-13 (1996), provided guidelines for the
withdrawal of life-sustaining treatment for persons in permanent vegetative states, and Act 169
does not affect that ruling. 20 Pa.C.S.A. § 5423(a)(1). The Superior Court in this case explicitly
limited its ruling to the right of guardians to refuse life-preserving treatment for persons who do
not have end-of-life conditions. See In re D.L.H., 967 A.2d 971, 987 (Pa. Super. Ct. 2009).
Accordingly, the Medical Amici's concern that the Superior Court's decision could lead to
confusion about end-of-life situations, Medical Amici Br. at 8-15, is unfounded.
11
"nothing less than a fully conscious contemporaneous decision by the patient to refuse lifepreserving treatment" is acceptable).9 Thus, Appellant’s claim that 20 Pa.C.S.A. § 5460(a)
should be construed as granting guardians authority to veto the instructions of a competent
person in an advance health care directive (other than as to the identity of the health care agent),
Appellants' Br. at 11-12, is contrary to the plain language of the statute.
C. Allowing Guardians to Withhold Life-Preserving Treatment When They Lack
Authority to Make Less Invasive and Lethal Health Care Decisions
Would Lead to Illogical and Unconstitutional Results.
Act 169's prohibition on the ability of guardians to withhold life-preserving treatment for
incapacitated persons who are not in end-of-life situations strips guardians of whatever authority
they arguably could have since 20 Pa.C.S.A. § 5521(f) explicitly limits guardians from acting
when another statute -- such as Act 169 -- is applicable. Even in the absence of Act 169,
however, the guardianship statute should not be construed to grant guardians authority to
withhold life-preserving treatment for an incapacitated person who is not in an end-of-life
situation.
The guardianship statute identifies a number of situations in which the right of the
guardian to make decisions for an incapacitated person is circumscribed. See discussion, supra,
at 6. These decisions involve fundamental human and constitutional rights that all individuals
have and retain, at least to some degree, even if they become incapacitated, e.g., the right to
Appellant asserts that Act 169 "‘does not affect the right of the individual to make
health care decisions.’" Appellant's Br. at 13 (citing 20 Pa.C.S.A. § 5463(e)). While nothing in
Act 169 would limit Mr. Hockenberry's right to make health care decisions to the extent he is
competent to do so, Act 169 cannot be construed to allow guardians to stand in the place of an
incapacitated person for purposes of refusing life-preserving treatment. To the contrary, as Amci
demonstrate, Act 169 prohibits guardians from making such decisions. Pennsylvania's different
treatment of decisions to decline life-preserving treatment made by competent persons and those
made for incapacitated persons by third-parties is certainly rational. See Cruzan ex rel. Cruzan v.
Director, Missouri Dep't of Health, 497 U.S. 261, 286-87 & n.12 (1990).
9
12
marry and divorce; the right to have children; and the right to maintain bodily integrity. 20
Pa.C.S.A. § 5521(d). Before a guardian takes any action that affects these rights, he must secure
a court order following a hearing, and the court must make specific findings that support its
decision. Id. The reason for these limitations is apparent. Fundamental rights cannot be
constitutionally denied without due process. The appointment of a plenary guardian cannot, by
itself, confer on that guardian the authority to strip the incapacitated person of these fundamental
rights. Additional due process protections are required to assure that incapacitated individuals
are not deprived of their fundamental rights without compelling reasons.
A guardian's decision to decline life-preserving treatment for an incapacitated person who
is not in an end-of-life situation involves the most significant fundamental right -- the right to life
itself. The right to life cannot be deemed less fundamental than the right to marry, to have
children, and to maintain one's bodily integrity. If these rights cannot be controlled by guardians
without express judicial approval and due process protections for the incapacitated individual,
then surely a guardian cannot unilaterally decide -- without any judicial oversight and due
process protections -- to refuse life-preserving treatment for an incapacitated person who is not at
the end of life. See In re Wendland, 28 P.3d 151, 154, 174 (Cal. 2001) (guardian does not have
authority to unilaterally make decisions that threaten the "fundamental rights to life and privacy
of" incapacitated persons by withholding life-preserving treatment for incapacitated persons who
are conscious if the guardians cannot prove by clear and convincing evidence that doing so
accords with the incapacitated person's own wishes or best interest); In re Edna M.F., 563
N.W.2d 485, 489-90 (Wis. 1997) ("as a matter of law, it is not in the best interests of the ward to
withdraw life-sustaining treatment ... unless the ward has executed an advance directive or other
statement clearly indicating his or her desires."), cert. denied, 522 U.S. 951 (1997); In re Martin,
13
538 N.W.2d 399, 406-09 (Mich. 1995) (holding that guardian must prove by clear and
convincing evidence that incapacitated person who is not in end-of-life situation previously
expressed a desire to refuse life-preserving treatment), cert. denied, 516 U.S. 1113 (1996).
Thus, given existing limits on their powers, allowing guardians to withhold lifepreserving treatment for incapacitated persons who are not at the end of life would lead to
illogical and unconstitutional results. See 1 Pa.C.S.A. §§ 1922(1), 1922(3) (courts are required
to interpret Pennsylvania statutes so as to avoid absurd and unconstitutional results).10
II. THIS COURT SHOULD ADOPT AND EXPAND THE
SUPERIOR COURT’S PROTECTIONS FOR INCAPACITATED
PERSONS FACED WITH A GUARDIAN’S PETITION
TO WITHHOLD LIFE-PRESERVING TREATMENT.
A. The Superior Court Properly Placed
A Heavy Burden of Proof on the Guardian.
In ruling on the merits of this case, the Superior Court assumed, without deciding, that in
exercising its inherent parens patriae authority, an Orphans’ Court could grant a guardian the
power to decline life-preserving medical treatment for an incapacitated person who does not
have an end-of-life condition. In re D.L.H., 967 A.2d at 982. The Superior Court held that,
before exercising that power, the guardian would have to prove, by clear and convincing
evidence, that refusing medical treatment would be in the best interest of the incapacitated
person. Id. Amici agree with Appellees’ position that a guardian is never permitted to deny life-
10
The Superior Court previously recognized that guardians cannot unilaterally act to
strip incapacitated persons of their fundamental rights. Prior to the amendment of the
guardianship statute in 1992, Pennsylvania law vested guardians with the "‘care and management
of the person ... under legal disability ....’" See In re Terwilliger, 304 Pa. Super. 553, 560, 450
A.2d 1376, 1380 (1982) (citation omitted). Despite such seemingly unlimited authority, the
Superior Court held that a guardian must secure judicial approval to sterilize an incapacitated
person and that due process protections must be afforded to the incapacitated person since it
involves "the fundamental right of procreative choice." See id.
14
preserving treatment to a life-long incapacitated person who is not in an end-of-life situation.
Given the facts and procedural posture of this case, it is not necessary for this Court to address,
as the Superior Court did, whether a court should ever authorize a guardian to withhold lifepreserving treatment for an incapacitated person not at the end of life. In the event this Court
chooses to consider this issue, however, Amici in this part of their Brief, set forth their view that
this Court should adopt the narrow standard delineated by the Superior Court and require
additional due process protections given the fundamental right that is at stake.
The Superior Court rightly placed a heavy burden of proof on a guardian who is seeking
authority to decline life-preserving treatment for an incapacitated person who does not have an
end-of-life condition. As the Court noted, a clear and convincing standard of proof has
repeatedly been found to be necessary in cases where a fundamental right is concerned. See In re
Terwilliger, 304 Pa. Super. at 564-65, 450 A.2d at 1382 (sterilization); In re A.L.D., 797 A.2d
326, 336 (Pa. Super. Ct. 2002) (involuntary termination of parental rights). It is therefore
imperative that a clear and convincing standard of proof be applied in cases involving an
individual’s fundamental right to life. See In re Wendland, 28 P.3d at 169-72 (applying clear and
convincing evidence standard to petition by guardian to withhold life-preserving treatment).
Due process requires that the burden of proving that death is in the incapacitated person’s
best interest must be borne by the person trying to infringe upon that person’s right to life. The
person at risk of losing his life should not have to prove that he is worthy of staying alive.
Therefore, the Superior Court’s placement of the burden on a guardian who is seeking authority
to decline life-preserving treatment for an incapacitated person who does not have an end-of-life
condition should be upheld. See In re Wendland, 28 P.3d at 174 (guardian has burden of proof in
petition to withhold life-preserving treatment); Cruzan, 497 U.S. at 287 n. 12 (“[t]he differences
15
between the choice made by a competent person to refuse medical treatment and the choice made
for an incompetent person by someone else to refuse medical treatment, are so obviously
different that the State is warranted in establishing rigorous procedures for the latter class of
cases which do not apply to the former class.”).11
B. Due Process Requires the Appointment of
Counsel for the Incapacitated Person.
Due process requires that individuals be afforded appropriate protections before they are
deprived of any fundamental right. See, e.g., In re Winship, 397 U.S. 358, 359 (1970); In re
Gault, 387 U.S. 1, 19-20 (1967). It is beyond dispute that a petition to withhold life-preserving
treatment for an incapacitated person who is not in an end-of-life situation involves a substantial
interest; indeed, it involves the most fundamental interest of all -- the right to life itself. A
decision by a guardian to withhold life-preserving treatment, if approved by a court, will result in
the individual's death as surely as an order to execute a criminal defendant. See discussion,
supra, at 10.
As this Court has acknowledged, "an individual is entitled to counsel in any proceeding
which may lead to a deprivation of 'substantial rights.'" In re Adoption of R.I., 455 Pa. 29, 31,
312 A.2d 601, 602 (1973). Thus, the right to appointed counsel has been held to be a necessary
safeguard in criminal proceedings when an individual's liberty interest is at stake. See Com. v.
Chmiel, 558 Pa. 478, 508, 738 A.2d 406, 422 (1999). Perhaps even more significantly, it is well
established that appointed counsel is a required component of due process in civil proceedings
The burden should not be “rework[ed],” as the Appellant suggests, Appellant’s Br. at
10, to fall on the party who seeks to challenge the guardian’s decision to decline life-preserving
treatment. More often than not, there will not be another interested party who is willing and able
to challenge such a decision. Contrary to Appellant’s contention, Appellant’s Br. at 10-11, the
Commonwealth will not always be involved in these cases. Indeed, the Commonwealth is only
involved in this case because Mr. Hockenberry happens to reside in a state institution.
11
16
when significant liberty interests are implicated. See, e.g., In re Gault, 387 U.S. 1, 34-37 (1967)
(civil juvenile delinquency proceedings); Corra v. Coll, 305 Pa. Super. 179, 185-95, 451 A.2d
480, 483-89 (1982) (civil paternity suit); 50 Pa.C.S.A. §§ 7206(b), 7303(b) (appointed counsel
required in civil commitment proceedings under Mental Health Procedures Act); 23 Pa.C.S.A. §
2313(a) - (a.1) (appointed counsel required for parents and child in termination of parental rights
hearing).
There is no more fundamental right than the right to life, and that right is at significant
risk in cases where a guardian is seeking court authority to withhold life-preserving medical
treatment. Moreover, there is not a better example of an instance where a person needs the
assistance of counsel to protect and assert his rights than in a situation where death is a very
likely outcome if life-preserving treatment is withheld, but the potential for a longer life, with
medical intervention, is high. Obviously, an incapacitated person, particularly one who is ill,
cannot effectively represent himself or retain his own counsel. Thus, it is critical that the court
appoint qualified counsel to make the best case for medical intervention to preserve the
incapacitated person’s life when he does not have an end-of-life condition.12
A guardian, especially one who has filed a petition to withhold life-preserving treatment,
cannot always be relied on to represent the best interests of the incapacitated person. There is
always the possibility that the guardian, or someone else that the guardian is concerned about,
has a competing interest that would be better served if life-preserving treatment were not
Appointment of qualified counsel to defend the incapacitated person’s right to life also
is critical because in most cases no other person or entity will be present to advocate the person’s
interest in living. As noted supra, at n.11, and contrary to the Appellant’s argument, the state
will rarely be involved in these cases. Absent state involvement, there will be no means to
assure that the incapacitated person’s right to life is legally protected.
12
17
provided. The guardian’s self-interest, or even a disagreement about the best interests of the
incapacitated person, could lead to disasterous and potentially irreversible results. See, e.g., In re
Estate of Rosengarten, 871 A.2d 1249, 1255-56 (Pa. Super. Ct. 2005) (guardian was not acting in
the best interests of the incapacitated person by unnecessarily and excessively depleting assets
and by ignoring legitimate request for a review hearing to redetermine her capacity). Indeed, a
guardian’s conclusion, as in this case, that a person with an intellectual disability who is
experiencing a short-term, treatable medical condition is no longer worthy of living suggests that
the guardian’s interpretation of the individual’s best interests is questionable, if not completely
compromised. Thus, the judicial tenet that the guardianship statute is “to be administered by the
courts with the utmost caution and conservatism” is especially relevant in cases where a guardian
is seeking the authority to make a decision that will end the life of the incapacitated person. Id.
at 1254.
Qualified and independent counsel for the incapacitated person, not just a guardian ad
litem, is essential to present the person’s interest in his fundamental right to life. A guardian ad
litem is “a special guardian appointed by the court in which a particular litigation is pending to
represent an infant, ward or unborn person in that particular litigation, and the status of the
guardian ad litem exists only in that specific litigation in which the appointment occurs.” In re
L.S.G., 767 A.2d 587, 591 (Pa. Super. Ct. 2001); accord Pa.R.C.P. No. 2053. In other words, a
guardian ad litem’s duty is to assert the best interests of the incapacitated person and to inform
the court of his opinion as to the incapacitated person’s interests. See American College of
Obstetricians and Gynecologists, Pennsylvania Section v. Thornburgh, 656 F. Supp. 879, 886
(E.D. Pa. 1987) (internal citation omitted). This role of the guardian ad litem is qualitatively
different than the role of counsel. Forming an independent, advisory opinion as to what is in the
18
best interests of an incapacitated person, especially in a case where life and death is at issue, is
very different from an attorney’s duty to “take whatever lawful and ethical measures are required
to vindicate a client’s cause or endeavor.” Pa. R. Prof’l Conduct 1.3.13 Accordingly, the
Superior Court’s decision should be modified to ensure that court-appointed counsel is provided
to all incapacitated persons who are the subjects of petitions by their guardians to withhold lifepreserving treatment when they are not in end-of-life situations.14
C. Due Process Requires A Court to Ensure
An Independent Medical Examination.
The Superior Court’s decision requires a guardian seeking the authority to decline lifepreserving medical treatment on behalf of an incapacitated individual to establish that death is in
the individual’s best interest by providing, at a minimum, “reliable medical expert testimony
documenting the incompetent’s severe, permanent medical condition (or severe, permanent
medical condition with progressive features) and current state of physical/psychological
deterioration and pain.” In re D.L.H., 967 A.2d at 984. The quality of the medical evidence
“should be of such a character that a court is definitively convinced that the benefits of
13
Moreover, there is no requirement that a guardian ad litem must be a lawyer. See, e.g.,
In re Stapas, 820 A.2d 850, 856 (Pa. Commw. 2003) (Orphans’ Court acted properly when it
recognized [grandmother] as a temporary guardian ad litem). Consequently, there is a risk that a
guardian ad litem may not have the requisite legal knowledge and skill to fulfill “his duty, as an
appointee of [the] court representing persons who cannot speak for themselves because of
disability, to defend vigorously every legal right which they [possess].” American College of
Obstetricians and Gynecologists, 656 F. Supp. at 885. This risk is not acceptable when the
incapacitated person’s fundamental right to life is at stake.
14
The guardianship statute gives the court the power to appoint counsel for an alleged
incapacitated person (or an adjudicated incapacitated person at a subsequent review hearing) “if
the court deems it appropriate” and mandates that counsel be appointed in “appropriate cases”
when counsel has not been retained by or on behalf of the incapacitated person. 20 Pa.C.S.A. §
5511(a); 20 Pa.C.S.A. § 5512.2(b). Counsel is not merely “appropriate” in these circumstances,
but is mandated by due process.
19
prolonging life, as a result of medical treatment, is markedly outweighed by the incurable nature
of the incompetent’s medical condition and the consistent, recurring degree of pain.” Id.
As the focus of the Superior Court’s test is on the medical state of the individual,
information from experts will largely determine whether the guardian’s petition to decline lifepreserving treatment will be granted. Given the fundamental right at stake, it is not sufficient to
simply rely on a guardian’s medical experts. If a court must conclude, “without hesitation,” that
death furthers the best interests of the individual based on the medical facts, diagnosis, and
prognosis of the particular case, there must be no question as to the reliability and objectivity of
the medical evidence presented.
This Court has already made clear that at least two expert medical opinions are necessary
before a surrogate decision maker can decline life-sustaining medical treatment on behalf of an
incompetent person in a persistent vegetative state. In re Fiori, 543 Pa. at 606, 673 A.2d at 91213. Additionally, the Superior Court has held that when a fundamental right of an incapacitated
person is at stake, the court must “ensure that adequate evidence will be presented” and, in so
doing, “must assure itself that a comprehensive medical, psychological and social evaluation is
made of the incompetent.” Terwilliger, 304 Pa. Super. at 565, 450 A.2d at 1382. “If need be,
the trial judge is not foreclosed from appointing its own experts to assist in the evaluation of the
incompetent’s best interests by examining the individual or testifying at the hearing.” Id. When,
as here, a person who does not have an end-of-life condition is faced with a petition that, if
granted, will result in his death, due process safeguards require that a court ensure an
independent, unbiased medical evaluation to fully assess the propriety of withholding lifepreserving treatment.
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III. ALLOWING A GUARDIAN TO WITHHOLD
LIFE-PRESERVING TREATMENT FOR A PERSON
WITH AN INTELLECTUAL DISABILITY IS
CONTRARY TO FEDERAL AND STATE POLICY AND
RAISES INSURMOUNTABLE MORAL AND ETHICAL CONCERNS.
A. Public Policy Must Prevent Discrimination in
Medical Treatment Based on Disability.
Appellant seeks unilateral authority to withhold life-preserving treatment for Mr.
Hockenberry, even though he did not have an end-of-life condition, and there is no evidence that
his short-term medical ailment (aspiration pneumonia) caused him excruciating pain or suffering.
Indeed, with appropriate medical treatment, Mr. Hockenberry recovered from his illness within a
few weeks. His physical ailment was far less severe than that frequently experienced by many
people.
It is doubtful that anyone would suggest to a physician or a court that a 52-year-old
person without disabilities should be denied life-preserving treatment for a short-term illness for
which there is a high probability of a full recovery. It is equally doubtful that a physician or a
court would give even a minute of consideration to such a suggestion.
It seems apparent that it was not Mr. Hockenberry's aspiration pneumonia but rather his
intellectual disability that caused his guardians to conclude life-preserving treatment should not
be provided. Such views of disability are archaic, dangerous, and should not be endorsed by the
legal system. Today, most people with intellectual disabilities live in the community with their
families and friends. They go to school, participate in social and religious activities, and many
are employed. An intellectual disability is not -- and should not be -- considered an affliction or
a problem that requires people to be hidden, much less to die prematurely, nor is it a condition
that is painful or otherwise causes "suffering." Thus, such a disability cannot ever be a sufficient
21
basis to justify a decision to withhold life-preserving treatment. Any other conclusion raises
insurmountable moral and ethical concerns.
There is an unfortunate history of discrimination in medical treatment for persons with
disabilities in Pennsylvania and throughout the country. This is perhaps most famously evident
in the “Baby Doe” cases that brought the issue of disability-based discrimination in medical
treatment to the forefront of public attention in the early 1980s.15 Disability-based
discrimination in medical treatment is also apparent in cases where a surrogate decision-maker
seeks a do-not-resuscitate (DNR) order for an incapacitated person for no medically apparent or
legally justifiable reason. See, e.g., In re Finn, 625 N.Y.S.2d 809 (N.Y. 1995) (DNR order
obtained by legal guardian for institutionalized man with profound mental retardation was not
supported by the evidence of his current medical condition as required by state’s Public Health
Law statute).
To counteract this negative, and often illegal, differential treatment, public policy must
promote the provision of health care for persons with disabilities in the same manner and to the
same extent as it does for citizens without disabilities. It must ensure that persons with
disabilities have the same rights and are treated with the same medical care and attention as
The first “Baby Doe” case originated in Indiana in 1982. Baby Doe was born with
Down Syndrome and a blocked esophagus that prevented him from swallowing. Because of his
mental retardation, his parents would not consent to an operation to correct his blocked
esophagus and would not allow him to be fed intravenously. In 1983, a baby girl (promptly
named “Baby Jane Doe”) was born with spina bifida, an abnormally small head, and
hydrocephalus (water on the brain) in New York. Her parents, like Baby Doe’s parents, decided
against treatment for their child (surgical closure of the spinal canal is a common procedure in
cases involving a child born with spina bifida). These cases prompted the federal government to
attempt to intervene in cases where disability discrimination threatened the life of a newborn
child – first through regulations under the Rehabilitation Act of 1973 (later struck down by the
courts) and then by statutory amendments to the federal Child Abuse Prevention and Treatment
Act. See Anita Silvers & Leslie Pickering Francis, Playing God with Baby Doe: Quality of Life
and Unpredictable Life Standards at the Start of Life, 25 Ga. St. U. L. Rev. 1061 (2009).
15
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persons without disabilities would be in the same situation and circumstances. To this end, it is
critical that this Court affirm the standard articulated by the Superior Court that, when assessing
the benefits of a prolonged life, no emphasis should be placed on the fact that the person has “a
mental disability or other cognitive deficiency.” In re D.L.H., 967 A.2d at 984. Quality of life
assumptions based solely on disability are simply veiled (if not overt) discrimination and cannot
be tolerated when a person’s life is at stake. As the Superior Court aptly noted, “[t]he mere fact
that a patient’s functioning is limited or his prognosis dim does not mean that he is not enjoying
what remains of his life or that it is in his best interests to die.” Id.
Appellant’s suggestion that the Superior Court's ruling discriminates against Mr.
Hockenberry on the basis of his disability because he is denied the right to refuse treatment
available to persons without disabilities, Appellant’s Br. at 13-14, is spurious. This argument is
premised on the assumption that Appellant’s decision to refuse medical treatment should be
treated as Mr. Hockenberry's decision to do so. But, of course, it is not the same thing. The
guardians are purporting to substitute their decision-making for that of Mr. Hockenberry. Mr.
Hockenberry, because he cannot make his own decision about medical care, simply is not in the
same position as a person without a disability who can do so.
Far from discriminating against Mr. Hockenberry or others with disabilities, the Superior
Court's decision that precludes guardians from unilaterally withholding life-preserving treatment
protects such individuals from discrimination. By limiting a guardian’s authority to act in these
circumstances, the Superior Court has assured that people will not be denied necessary, lifepreserving treatment simply because they have disabilities.
23
B. Public Policy Must Further the State’s
Paramount Interest in Protecting Life.
No reasonable guardian would presume that a guardianship order confers the authority to
allow an incapacitated person in their care to die unnecessarily, especially in the absence of an
end-of-life situation. Parents in Pennsylvania can be convicted and imprisoned if they refuse to
provide life-preserving treatment for minor children for whom they are the natural guardians,
see, e.g., Com. v. Barnhart, 345 Pa. Super. 10, 17-26, 497 A.2d 616, 620-25 (1985) (upholding
conviction for involuntary manslaughter and child endangerment of parents who claimed that
their religious beliefs barred them from seeking medical help for a condition that threatened their
child's life), app. denied, 517 Pa. 620, 538 A.2d 874 (1988) (Table), cert. denied, 488 U.S. 817
(1988), or they could lose custody of their children if they refuse to provide medical care, 42
Pa.C.S.A. §§ 6302, 6341(c), 6351(a) (a child can be adjudicated “dependent” and removed from
the parent's care if the parents, inter alia, fail to provide necessary health care). Moreover,
certain individuals who are responsible for "care-dependent" adults can be held criminally liable
for intentionally, knowingly, or recklessly failing to provide care, goods, or services to preserve
the health, safety, or welfare of the individual. 18 Pa.C.S.A. § 2713. Further, in In re Dorone,
517 Pa. at 9, 534 A.2d at 455, this Court held that it was appropriate to appoint a guardian to
consent to life-preserving treatment for an adult over the religious objections of his parents.
Again and again, Pennsylvania’s General Assembly and courts have recognized the
primacy of life preservation. See also In re Fiori, 543 Pa. at 601-02, 673 A.2d at 910
(recognizing Pennsylvania’s interest in preserving life); 20 Pa.C.S.A. §§ 5423(a)(2)-(3) (Act 169
does not authorize mercy killing, euthanasia, or assisted suicide and cannot be construed to
permit actions or omissions that will lead to the end-of-life unless expressly authorized in that
statute). Allowing plenary guardians to unilaterally take action that results in the unnecessary
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death of incapacitated persons would be wholly contrary to Pennsylvania’s guiding policy of life
preservation.
CONCLUSION
For all the reasons set forth above, Amici Curiae respectfully request that this Court 1)
affirm the Superior Court’s decision that guardians do not have the authority to withhold lifepreserving treatment to life-long incapacitated persons not in an end-of-life situation; and 2) in
the event this Court addresses whether a court should ever authorize a guardian to withhold lifepreserving treatment for an incapacitated person not at the end of life, hold that incapacitated
persons subject to petitions to withhold life-preserving treatment be provided with all necessary
due process protections, including court-appointed counsel and an independent medical
examination.
Respectfully submitted,
Dated: March 12, 2010
By:
____________________________________
Mark J. Murphy
I.D. No. 38564
Robin Resnick
I.D. No. 46980
Shari A. Mamas
I.D. No. 78321
Disability Rights Network of Pennsylvania
1315 Walnut Street, Suite 500
Philadelphia, PA 19107-4798
(215) 238-8070
Counsel for Amici Curiae Disability Rights
Network of Pennsylvania, The Arc of
Pennsylvania, Achieva, Vision for Equality,
Liberty Resources, Inc., Pennsylvania
Developmental Disabilities Council, and
Not Dead Yet
25