Better Alive Than Dead

Spring 2011

By Thomas Forr

When David Hockenberry, a man with profound mental retardation, came down with pneumonia in 2007, he began having difficulty breathing. His doctors insisted that he be placed on a temporary ventilator to survive. His guardians, however, citing Mr. Hockenberry’s “best interests,” sought to refuse the treatment. In doing so, they launched a legal battle that reached all the way to Pennsylvania’s highest court.1

In In re D.L.H., an Incapacitated Person, the Pennsylvania Supreme Court addressed “whether plenary guardians can refuse life-preserving treatment on behalf of a person who lacks—and has always lacked—the capacity to make personal health care decisions, where the person is neither suffering from an end-stage medical illness nor permanently unconscious.”2 The parties framed this issue in starkly different lights. The guardians, Mr. Hockenberry’s parents, cast their case in the language of “autonomy,” “best interests,” and the “fundamental right to refuse unwanted medical treatment.”3 The Department of Public Welfare (“DPW”),4 by contrast, underscored the potential for abuse and stressed that permitting guardians to refuse such treatment would be a radical rejection of the inherent value of life for those with severe disabilities.5

In the end, the court decided that the legislature had already resolved this dispute. Under Pennsylvania law, only competent individuals can designate a “health care agent” as a substitute medical decision-maker; and only a “health care agent” can refuse life-preserving treatment for an incompetent person who is neither terminally ill nor permanently unconscious.6 The court found that these provisions superseded the broad power of guardians to assert the “rights and best interests” of their wards.7 Treatment, the court concluded, must be provided in cases like Mr. Hockenberry’s: “[W]here, as here, life-preserving treatment is at issue for an incompetent person who is not suffering from an end-stage condition or permanent unconsciousness, and that person has no health care agent . . . care must be provided.”8

The Story

According to his doctors, 53 year-old David Hockenberry has an IQ of around 25, classifying his condition as one of “profound mental retardation.”9 Accordingly, Mr. Hockenberry has been deemed incompetent by the state since his birth. Nevertheless, the parties to the case stipulated that Mr. Hockenberry enjoys high quality of life at the state-run facility where he lives.10 As the DPW put it,

[Mr. Hockenberry], though nonverbal, is ambulatory, can partially dress himself, selects his food at the Ebensburg Center cafeteria (his favorite dessert is rice pudding), can feed himself, expresses preference for the company of some over others, and goes off the Ebensburg Center campus several times a month to visit shopping malls, eat at restaurants such as Wendy’s and Dairy Queen, and go to the movies.11

In 2007, Mr. Hockenberry contracted aspiration pneumonia. Breathing became a struggle. To prevent suffocation, Mr. Hockenberry’s doctors advised that he be placed on a temporary ventilator.12

Mr. Hockenberry’s guardians attempted to refuse the ventilator. In essence, they advanced two claims: First, if Mr. Hockenberry were competent to assess his situation, he would not want the ventilator; second, that it was in Mr. Hockenberry’s best interests to refuse an intrusive mechanical ventilator. Rejecting these arguments, and holding that guardians have no power to refuse treatment in such circumstances, the Orphan’s Court ordered doctors to treat Mr. Hockenberry.13

After three weeks on the ventilator, Mr. Hockenberry fully recovered.14 Today, Mr. Hockenberry continues to live as he always had. And so, the issue of his treatment is technically moot. Regardless, the Pennsylvania appellate courts decided to hear his guardians’ appeal, recognizing that this critical issue would likely recur.15

Background Law: Constitutional and Common Law

Throughout this litigation, Mr. Hockenberry’s guardians insisted that the case implicated “the fundamental right to refuse unwanted medical treatment.”16 This argument proved unsuccessful for two main reasons. First, the court recognized that the argument has no basis in constitutional law.17 Moreover, the argument calls for a vast extension of the common law right recognized in Pennsylvania—an extension, the court concluded, that the legislature had foreclosed.

In Cruzan v. Director, Missouri Department of Health, the seminal case involving decision-making for a patient in a persistent vegetative state, the U.S. Supreme Court noted that a competent person generally has the right to refuse unwanted medical treatment.18 The Court, however, expressly rejected the notion that an incompetent person possesses the same right.19 Emphasizing that those who lack capacity cannot make informed and voluntary decisions, the Court stated,

The differences 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.20

Thus, the Court held, to protect the vulnerable or simply to assert an unqualified interest in life over death, states are free to require treatment for those who cannot refuse it themselves.21

Pennsylvania, however, is not among those states that always require treatment for those who are legally incompetent to refuse it. Relying on common law principles, the Pennsylvania Supreme Court concluded in In re Fiori that close family members of a patient in a persistent vegetative state can implement the decision they believe the patient would have desired.22 The court, however, explicitly limited this substitute decision-making power to cases involving once-competent patients who have become permanently unconscious.23 For those who never had the capacity to speak for themselves and for those with treatable illnesses, the power recognized in Fiori does not apply and, as discussed below, the legislature precluded that power from being extended to such cases.

The Statutory Scheme

In the absence of any compelling constitutional argument, the court focused exclusively on two statutes. Beginning with a statute delineating the powers of guardians, the court recognized that Pennsylvania law grants guardians broad authority “to assert the rights and best interests” of incapacitated persons in their care.24 However, the statute limits a guardian’s authority for certain decisions—decisions such as abortion, sterilization, divorce, admission to a psychiatric facility, and relinquishing parental rights.25 Nowhere in this list, however, will one find “refusing medical treatment.” Thus, the guardians, invoking expressio unius est exclusio alterius, argued that the refusal of treatment falls within their broad power to assert Mr. Hockenberry’s “best interests.”26

In response, the court pointed out that the guardianship statute limits a guardian’s powers in one additional way: powers under the guardianship statute are limited where another statute trumps its broad grant of authority.27 The court found that the Health Care Agents and Representatives Act (“Act”) did just that.28 The Act establishes a framework for surrogate decision-making through advance health care directives, such as health care powers of attorney. The cornerstone of the Act is its provision permitting competent persons—and only competent persons—to designate a “health care agent,” that is, someone vested with the power to make health care decisions in the event that the principal loses competency.29 And, critically for the present case, the Act imposes an affirmative duty on doctors, in certain circumstances, to treat incompetent patients who have not designated a “health care agent.” The Act provides that

[h]ealth 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 [1] the individual is competent and objects to such care or [2] a health care agent objects on behalf of the principal . . . 30

The court emphasized the clarity of the Act’s mandate: treatment, for those without a health care agent, including those who never had the capacity to designate one, must be provided. According to the court, this legislation reflects “a policy position of greater state involvement to preserve life” where—absent an express designation of authority—an “incompetent person suffers from a life-threatening but treatable condition.”31 Such legislation, the court wrote, supplanted the guardians’ plenary power and any common law right to refuse medical treatment, even if such a right had existed.32 Thus, making clear that it was expressing no policy position, the court held, “[W]here, as here, life-preserving treatment is at issue for an incompetent person who is not suffering from an end-stage condition or permanent unconsciousness, and that person has no health care agent, the Act mandates that care must be provided.”33



1 In re D.L.H., an Incapacitated Person, No. 98 MAP 2009 (Pa. Aug. 17, 2010).

2 Id., slip op. at 8.

3 See In re D.L.H., Pet. for Permission to Appeal, at 2; Brief for Appellants at 13.

4 In addition, amici for the DPW included both disability rights and pro-life groups. See Brief of the Disability Rights Network of Pennsylvania, et al.; Brief of the Pennsylvania Family Institute, et al.

5 See In re D.L.H., Brief of Appellees to Super. Ct., at 12-15.

6 See Health Care Agents and Representatives Act, 20 Pa. C.S. §5452(a), 5462(c)(1).

7 In re D.L.H., No. 98 MAP 2009, slip op. at 14, 15 n.9.

8 Id. at 16.

9 See In re D.L.H., Brief of Appellees to Super. Ct., at 7.

10 Id. at 2.

11 Id. at 2-3.

12 Id. at 3; In re D.L.H., No. 98 MAP 2009, slip op. at 2.

13 In re D.L.H., No. 98 MAP 2009, slip op. at 2-5.

14 Id. at 2.

15 Id. at 5-6.

16 See In re D.L.H., Pet. for Permission to Appeal, at 2; Brief for Appellants at 13.

17 See In re D.L.H, No. 98 MAP 2009, slip op. at 13, 16.

18 497 U.S. 261, 278 (1990).

19 Id. at 279-80.

20 Id. at 287, n. 12.

21 Id. at 281-82.

22 673 A.2d 905, 912 (Pa. 1996).

23 Id. at 912-13. In addition, by statute, Pennsylvania now permits close family members to refuse treatment on behalf of an incompetent person in the end-stage of a terminal illness, where the burdens of treatment outweigh the benefit. See 20 Pa. C.S. §5456(c).

24 See 20 Pa. C.S. § 5521(a).

25 Id. at 5521(d)-(f).

26 In re D.L.H., No. 98 MAP 2009, slip op. at 8.

27 Id. at 14-15.

28 Id. (citing 20 Pa. C.S. §§ 5451-5471, particularly §5462(c)(1)).

29 20 Pa. C.S. §5456(a).

30 20 Pa. C.S.§5462(c)(1).

31 In re D.L.H. 98 MAP 2009, slip op. at 14.

32 Id. at 15 n.9.

33 Id. at 16.

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