1 Developmental disability is the term legislatures, courts and health professionals now use when referring to the mentally retarded. It is a disability “attributable to: mental retardation, cerebral palsy, epilepsy or autism … [and] results in impairment of general intellectual functioning or adaptive behavior ….” N.J. Stat. Ann. § 30: 6D-3(a)(5) (West Supp. 1989). The American Association of Mental Deficiency defines mental retardation as “subaverage general intellectual functioning which originates during the developmental period and is associated with impairment in adaptive behavior.” Note, Procreative Choice for the Incompetent Developmentally Disabled: Conservatorship of Valerie N., 36 De Paul L. Rev. 95 n.1 (1986) (citations omitted); but cf 42 U.S.C. § 6001(5) (1982):

The term “developmental disability” means a severe, chronic disability of a person which —

• (A) is attributable to a mental or physical impairment or combination of mental and physical impairments;

• (B) is manifested before the person attains age twenty-two;

• (C) is likely to continue indefinitely;

• (D) results in substantial functional limitations in three or more of the following areas of major life activity: (i) self-care, (ii) receptive and expressive language, (iii) learning, (iv) mobility, (v) self-direction, (vi) capacity for independent living, and (vii) economic self-sufficiency; and

• (E) reflects the person's need for a combination and sequence of special, interdisciplinary, or generic care, treatment, or other services which are of lifelong or extended duration and are individually planned and coordinated.

This Note, however, focuses on the developmentally disabled who have been mentally incompetent from birth. By exclusively relying on the federal statute's definition, those suffering from a lifelong physical disability which affects, for example, their self-care, mobility and economic self-sufficiency, though mentally competent to make decisions regarding their well-being, would be wrongly deprived of the opportunity to exercise their right of self-determination. Therefore, the federal statute's definition is inapplicable to this Note's targeted group: the developmentally disabled who are also mentally incompetent.

2 See supra note 1.

3 See, e.g., Cal. Prob. Code § 1950 (West Supp. 1989) (The developmentally disabled “are unable to give the informed, voluntary consent necessary to their fully exercising the right to procreative choice ….“).

4 For support of a terminally ill patient's right to die, see In re Quinlan, 70 N.J. 10, 38, 42, 355 A.2d 647, 662-64, cert, denied, 429 U.S. 922 (1976) (holding that an individual's decision to terminate life-support systems, thereby ending one's own life, is derivative of their right of privacy). The right of privacy has been delineated in Griswold v. Connecticut, 381 U.S. 479 (1965) (holding that “the First Amendment has a penumbra where privacy is protected from governmental intrusion“); see also Eisenstadt v. Baird, 405 U.S. 438, 453 (1972); Stanley v. Georgia, 394 U.S. 557, 564 (1969). The right to procreate was upheld in Skinner v. Oklahoma, 316 U.S. 535 (1942). The right not to procreate derives from Eisenstadt as well as from Roe v. Wade, 410 U.S. 113 (1973). Finally, the right not to be involuntarily institutionalized without a jury determination was established in Humphrey v. Cady, 405 U.S. 504 (1972), and upheld in Addington v. Texas, 441 U.S. 418, 425 (1979). In two cases considered below, Secretary of Pub. Welfare v. Institutionalized Juveniles, 442 U.S. 640 (1979) and Parham v. J.R., 442 U.S. 584 (1979), the Court reviewed only due process challenges regarding the adequacy of hearings held prior to institutionalization. Neither case, however, precludes the possibility of raising an equal protection claim to argue that involuntary institutionalization of the developmentally disabled deprives them of their liberty in violation of the fourteenth amendment.

5 See, e.g.. Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 757, 370 N.E.2d 417, 433-34 (1977).

6 Id.; see also Lynde v. Vose, 326 Mass. 621, 623, 96 N.E.2d 172, 173-74 (1951).

7 See, e.g., Mass. Gen. L. ch. 201, § 34 (1988) (The court may appoint a guardian ad litem to defend a “mentally retarded person … in the enforcement or defense of any legal rights.“); N.Y. Civ. Prac. L. & R. 1202 (McKinney Supp. 1989) (It can be inferred from the Practice Commentaries, C1202:3, that a guardian ad litem is appointed to “protect the rights and interests of an incompetent.“); Cal. Civil Proc. Code § 373 (c) (West Supp. 1989).

8 Baron, , Assuring “Detached but Passionate Investigation and Decision “: The Role of Guardians Ad Litem in Saikewicz-type Cases, 4 Am. J.L. & Med. 111, 123 (1978-79)Google Scholar.

9 Saikewicz, 373 Mass. at 757, 370 N.E.2d at 433-34; see also Dunphy, & Cross, , Medical Decisionmaking for Incompetent Persons: The Massachusetts Substituted Judgment Model, 9 W. New Eng. L. Rev. 153, 161-62 (1987)Google Scholar (where the respective roles of counsel and the guardian ad litem are clarified, “with counsel representing the proposed ward and acting as his or her advocate, and the guardian ad litem serving as an independent investigator for the court.“); but cf. Baron, supra note 8, at 129 (where it is recommended that the guardian ad litem should “see his role solely as that of an advocate for the positions opposed to the petition. He is to investigate, develop, and present evidence for his side, cross-examine opposing witnesses, and make arguments just as he would if he had a competent client who had retained him to oppose the position.“). In cases involving constitutional questions, a worthwhile suggestion is made by Justice Brennan in his separate opinion in Secretary of Pub. Welfare v. Institutionalized Juveniles, 442 U.S. 640 (1979). There Justice Brennan concluded that due process could be satisfied in a hearing pursuant to a petition for institutionalization only if the state “assign[ed] each institutionalized child a representative obliged to initiate contact with the child and ensure that the child's constitutional rights are fully protected.” Id. at 652 (Brennan, J., concurring in part, dissenting in part).

10 Baron, supra note 8, at 129-30.

11 442 U.S. 584 (1979).

12 Id. at 613.

13 Id. at 609.

14 Id. at 610.

15 Id.

16 The Court reasoned that parents who wish to “dump” their children on the state will be discovered during the course of the psychiatric evaluations. Moreover, the Court stated that due process is not violated even if parents might be able to deceive the psychiatrists. Id. at 611-12.

17 Id. at 611.

18 Id. at 627 (Brennan, J., concurring in part, dissenting in part). Justice Brennan, concerned that the Court had overlooked the matter of due process, concluded that “commitment to a mental hospital ‘is a deprivation of liberty which the State cannot accomplish without due process of law.’ “ Id. (quoting O'Connor v. Donaldson, 422 U.S. 563, 580 (1975) (Burger, C.J., concurring)); see also Dunphy & Cross, supra note 9, at 162 (concluding that “[a]t a minimum, counsel for the ward can ensure that the court has before it a complete picture of the case“). This procedural step is accomplished primarily by questioning those involved, including physicians, family members, psychologists and social workers.

19 See, e.g., Colo. Rev. Stat. § 27-10.5-129 (1973 & Supp. 1988). In particular, part (3) of the statute requires that a hearing on the petition for sterilization of a developmentally disabled person must be held promptly. Id. at § 27-10.5-129(3). Further, the individual “shall be physically present throughout the entire proceeding, represented by counsel, and provided the opportunity to present testimony and cross-examine witnesses.” Id.; Cal. Prob. Code § 1954 (West Supp. 1989) (counsel must be appointed to represent the developmentally disabled individual).

20 See, e.g.. In re C.D.M., 627 P.2d 607 (Alaska 1981); Scott, , Sterilization of Mentally Retarded Persons: Reproductive Rights and Family Privacy, 1986 Duke L.J. 806, 859-61Google Scholar; see also Note, supra note 1, at 105 n.59 (observing that the C.D.M. court “required that the incompetent individual be afforded a hearing at which the individual must be represented by a guardian ad litem“).

21 Scott, supra note 20, at 845.

22 Commentators have suggested varying degrees of judicial intervention. One commentator endorses the idea that “private decisionmaking … should be widely adopted” in cases involving incompetent persons. Comment, The Role of the Family in Medical Decisionmaking for Incompetent Adult Patients: A Historical Perspective and Case Analysis, 48 U. Pitt. L. Rev. 539, 565 (1987)Google Scholar. In cases involving a person incompetent from birth, “if caring and concerned family members are available, it must be presumed that they will act in the best interests of their incapacitated family member.” Id. Court intervention is necessary only in case “a conflict of interest exists … between the family and the patient.” Id. This view respects family unity without circumventing due process requirements. The difficulty with this position, however, is that it limits the court's role too severely by failing to require an adversarial hearing or an appointment of a guardian ad litem, as the family's decision effects the disabled child's constitutional rights. While caring families will undoubtedly believe subjectively that they have the incompetent child's best interests in mind, this may not necessarily be the case. A “conflict of interest” may easily arise without the awareness of all family members.

A more extreme position is reflected by the court's opinion in In re Barbara C., 101 A.D.2d 137, 474 N.Y.S.2d 799 (1984), a case concerning the consent given by a father to allow his severely retarded daughter to have an abortion. The court held that, “[u]nder the statutory scheme, where an appropriate relative is available to grant or deny consent, the sole role of the judiciary is to resolve any dispute which may arise concerning the patient's ability to grant consent.” Id. at 139, 474 N.Y.S.2d at 801 (emphasis added). While the court was constrained by relevant statutes, this perspective reinforces the position that courts should refrain from interfering with such matters. Again, however, while the parents may be presumed to have the child's best interests in mind, this may not necessarily be true. The courts should primarily serve as a check on the family's decisionmaking process, confirming that the decision is motivated by the individual's best interest and not some less responsible reason.

23 Scott, supra note 20, at 847.

24 98 N.J. 321, 486 A.2d 1209 (1985).

25 Id. at 359, 486 A.2d at 1229 (emphasis added). Conroy held that an adult, no longer competent, has the right to refuse medical treatment. The case concerned an 84 year old comatose woman. Her guardian petitioned the court to remove her nasogastric feeding tube. The quoted text illustrates that the Conroy court realized that the issue surrounding the right of self-determination for others, such as the mentally disabled, was controversial and could not easily be resolved.

26 373 Mass. 728, 370 N.E.2d 417 (1977).

27 Id. at 746, 370 N.E.2d at 434.

28 See, e.g., City of Cleburne v. Cleburne Living Center, 473 U.S. 432 (1985).

29 Cf. Rhoden, Litigating Life and Death, 102 Harv. L. Rev. 375, 387-88 (1988). In an insightful but somewhat overstated criticism of the use of substituted judgment, Professor Rhoden concluded that it is inaccurate to attribute rights to one who cannot hope to exercise them. She stated that:

Id. at 388.

According to Rhoden, what apparently impregnates a right with “meaning” is an individual's ability to cognitively exercise that right. While “it seems very odd” to attribute to one a right she can never exercise, the path Rhoden follows is potentially dangerous. If there is no “right to choose” for those who are incapable of making a choice, then substituted judgment would clearly be a legal fiction. However, the fundamental right to choose, with regard to terminating medical treatment, engaging in procreation or resisting involuntary institutionalization need not be eliminated in order to expose the inherent weaknesses of substituted judgment. Rhoden's suggestion that there are no such constitutional rights for those unable to exercise them would seem to undercut any social, political or legal progress made by the developmentally disabled. Her conclusion, however, that the proxy must decide whether it be the parent, guardian or state is sound. Id. at 388. But to assure the best interests of the disabled individual, the proxy's decision must equal a constitutionally protected choice which the developmentally disabled person would make herself, provided the benefits outweigh the burdens.

30 473 U.S. 432 (1985).

31 Id. at 446 (emphasis added). In Cleburne, the plaintiff challenged the validity of a zoning ordinance which excluded group homes for the mentally disabled. Id. at 432.

32 While the Court has applied only a “rational relationship” test to the classification of mentally retarded individuals, it has applied “strict scrutiny” for racial classifications. See Loving v. Virginia, 388 U.S. 1 (1967); Palmore v. Sidoti, 466 U.S. 429(1984). For gender classifications, the Court has applied a “heightened scrutiny” test. See Craig v. Boren, 429 U.S. 190 (1976); Frontiero v. Richardson, 411 U.S. 677 (1973).

33 Cleburne, 473 U.S. at 444.

34 This notion that a classification enveloping the mentally disabled is constitutional if it bears a rational relationship to the governmental interest, finds its roots in a lower court decision nine years prior to Cleburne. The court in North Carolina Ass'n for Retarded Children v. North Carolina, 420 F. Supp. 451 (M.D.N.C. 1976), held that “mentally retarded persons are sufficiently different from the general population to justify classification for some purposes without meeting the compelling governmental interest test.” Id. at 458. The decision in this case is particularly relevant here, as it concerns the constitutionality of a state sterilization statute applied to mentally retarded persons.

35 Cleburne, 473 U.S. at 444 (Marshall, J., dissenting). Justice Marshall suggested that had the Court correctly applied the “traditional rational-basis test, [then] Cleburne's ordinance surely would be valid.” Id. at 456. The fear is that while such a statute or ordinance may be overly broad and unreasonably discriminatory, it could still be upheld by a court, like the court in North Carolina Ass'n for Retarded Children, that applied the rational basis test.

As an alternative, therefore, Marshall urged in his dissent that at least heightened scru tiny be applied. The test would be not whether the statute or ordinance was simply rationally related to a governmental purpose, but whether “the classification is substantially related to important and legitimate objectives.” Id. at 472.

36 See supra note 32.

37 United States v. Carolene Products Co., 304 U.S. 144, 152 n.4 (1938).

38 University of Cal. Regents v. Bakke, 438 U.S. 265, 303 (1978).

39 Cleburne, 473 U.S. at 462 n.8-9 (1985) (Marshall, J., dissenting).

40 See, e.g., Roe v. Wade, 410 U.S. 113 (1973); Eisenstadt v. Baird, 405 U.S. 438 (1972); Griswold v. Connecticut, 381 U.S. 479 (1965); Skinner v. Oklahoma, 316 U.S. 535 (1942) (each supporting the notion that a law affecting a fundamental right — procreation — must withstand strict scrutiny analysis).

41 Palmore v. Sidoti, 466 U.S. 429, 432-33 (quoting McLaughlin v. Florida, 379 U.S. 184, 196 (1964)); see also Loving v. Virginia, 388 U.S. 1 (1967). The Court in Palmore held that racial classifications were subject to strict scrutiny and applied this standard to determine that the lower court's ruling was unconstitutional.

42 420 F. Supp. 451 (M.D.N.C. 1976).

43 N.C. Gen. Stat. § 35-50 (1975).

44 North Carolina Ass'n for Retarded Children, 420 F. Supp. at 457.

45 Id. at 455.

46 The court in North Carolina Ass'n for Retarded Children upheld a provision which made it the public servant's duty to institute sterilization proceedings when such a procedure would be in the best interest of the general public. But the court held unconstitutional a provision that allowed the institution of a sterilization proceeding merely at the request of the disabled person's legal guardian or next of kin. Id. at 455-56.

47 Scott, supra note 20, at 837-40.

48 See Fischman, , In re Truesdell: North Carolina Adopts Two New and Conflicting Standards for Sterilization of Mentally Retarded Persons, 64 N.C. L. Rev. 1196, 1212 n.128 (1986)Google Scholar (“The belief that sterilization is necessary to protect the unborn child is largely based on eugenic theories — theories which … are scientifically discredited…. [M]any [mentally disabled people] are capable of providing the affection, care, and intellectual stimulation necessary for a reasonable environment for children.” (quoting Murdock, , Sterilization of the Mentally Retarded: A Problem or a Solution?, 62 Calif. L. Rev. 917, 928 (1974)CrossRefGoogle ScholarPubMed)); S. Vitello & R. Soskin, Mental Retardation: Its Social and Legal Context 93-94 (1985); Note, Retarded Parents in Neglect Proceedings: The Erroneous Assumption of Parental Inadequacy, 31 Stan. L. Rev. 785, 789-90 (1979)CrossRefGoogle Scholar.

49 City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 472 n.24 (1985) (Marshall, J., concurring in part, dissenting in part).

50 In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert, denied, 429 U.S. 922 (1976) (where the court held that a 21 year old woman in a persistent vegetative state could be removed from a respirator and allowed to die by natural forces. The court derived its conclusion from Quinlan's right of privacy which could be asserted on her behalf by her father/guardian. Her removal from the respirator, however, was conditioned upon a concurrence of her guardian and other family members, after the treating physicians concluded that her condition was irreversible and the hospital's ethics committee agreed with the prognosis.); In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985) (where the court held that an 84 year old incompetent woman's right to privacy was furthered by her guardian seeking permission to remove her nasogastric feeding tube).

Also, the Conroy court held that “[t]he right of an adult who … was once competent, to determine the course of her medical treatment remains intact even when she is no longer able to assert that right or appreciate its effectuation.” Id. at 359-60, 486 A.2d at 1229. The court further held that the third party, or guardian, who decides to terminate such medical treatment on behalf of the incompetent patient, may only do so “when it is clear that the particular patient would have refused the treatment under the circumstances involved.” Id. To determine the incompetent patient's wishes, the court offers several suggestions. First, “[t]he patient may have expressed, in one or more ways, an intent not to have life-sustaining medical intervention.” Id. at 361, 486 A.2d at 1229. This could be achieved through a “living will,” a written declaration, a durable power of attorney or an oral directive stating the patient's “desire not to have certain types of life-sustaining treatment administered under certain circumstances.” Id. More remotely, such evidence may include remarks on the prolongation of life discussed with family members or friends, In re Quinlan, 70 N.J. at 41, 335 A.2d at 664, or asserted religious beliefs, In re Storar, 52 N.Y.2d 363, 379-80, 420 N.E.2d 64, 72, 438 N.Y.S.2d 266, 274 (1981).

The Conroy court then delineated three tests which can be applied in order to determine whether the information about a patient's intent is sufficient. In cases where the incompetent patient's intent is known by the guardian, the court will apply the “subjective test” and allow what that person would have wanted under those circumstances. However, in cases where the patient's intent cannot be extrapolated from prior statements and actions, the doctrine of parens patriae is applied. This doctrine “permits the state to authorize guardians to withhold or withdraw life-sustaining treatment from an incompetent patient if it is manifest that such action would further the patients best interest ….” In re Conroy, 98 N.J. at 365, 486 A.2d at 1231. This doctrine leads to the other two tests. First, the “limited-objective [test] permits the termination of treatment for a patient who had not unequivocally expressed his desires before becoming incompetent, when it is clear that the treatment in question would merely prolong the patient's suffering.” Id. at 365, 486 A.2d at 1232. The third test — the “pureobjective” test — is applied only if there is no evidence of the patient's wishes under such circumstances. In order to terminate life-sustaining treatment under the “pure-objective” test, it must be determined that “the recurring, unavoidable and severe pain of the patient's life with the treatment should be such that the effect of administering life-sustaining treatment would be inhumane.” Id. at 366, 486 A.2d at 1232.

51 In re Boyd, 403 A.2d 744, 749 (D.C. 1979).

52 See Note, In Re Conroy: Forging a Path to Death With Dignity, 67 B.U.L. Rev. 365, 371-72, (1987)Google Scholar (“[W]here the patient has been mentally retarded for most of his life, it is impossible to ascertain that patient's subjective feelings and desires. In the absence of such evidence, there is no basis for the substituted judgment doctrine.“).

53 See In re Boyd, 403 A.2d at 744.

54 Id. (while the Boyd court purported to have applied substituted judgment, it nevertheless recognized the test's shortcomings and admitted that the test is incomplete).

55 Id. at 751; see also Rawls, J., A Theory of Justice 209 (1971)Google Scholar (“If preferences are unknown, we must act with respect to the preferences a reasonable, competent person in the incompetent's situation would have.“); Robertson, , Organ Donations by Incompetents and the Substituted Judgment Doctrine, 76 COLUM. L. Rev. 48, 63 (1976)CrossRefGoogle Scholar; but cf. Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 750-52, 370 N.E.2d 417, 430-31 (1977) (when applying the substituted judgment test, the court concluded that it might be helpful to consider “what a majority of people would do in circumstances that truly were similar ….” The court, however, rejected such a “reasonable person inquiry” and adopted a test “subjective in nature — that is, the goal [of which] is to determine with as much accuracy as possible the wants and needs of the individual involved.” Id. Of course, by considering the individual's “needs,” even Saikewicz seems to move from a strict application of substituted judgment toward consideration of the person's best interests.

56 The best interest and substituted judgment tests have been occasionally confused. One commentator has suggested that in order to assure a “ ‘patient's best interest’ … the court should make a ‘substituted judgment.’ “ Comment, The Nightmare of Forcible Medication: The New York Court of Appeals Protects the Rights of the Mentally Ill Under the State Constitution, 53 Brooklyn L. Rev. 885, 909 (1987)Google Scholar. Making a substituted judgment does not necessarily assure that the individual's best interests will be served. See infra note 60.

57 See infra notes 102-13 and accompanying text.

58 For example, a court must either: (1) incorporate the notion of religious beliefs into a mind that has never considered such a concept; or (2) assume that the developmentally disabled person has such beliefs and then must assign some worth to those beliefs.

59 In criticising the Saikewicz decision, Rhoden suggested that:

Id.; Rhoden, supra note 29, at 386; see also In re Storar, 52 N.Y.2d 363, 380, 420 N.E.2d 64, 73, 438 N.Y.S.2d 266, 275 (1981) (expert testimony classifying substituted judgment as applied solely to the developmentally disabled similar to asking whether “if it snowed all summer would it then be winter?“); but cf. Aristotle, on the Soul, Bk. III, Ch. 4 (J.A. Smith trans., R. McKeon ed. 1941) (where Aristotle, in his discussion on the nature of the soul, concludes that “the mind too is then able of thinking itself).

60 One criticism of the best interest analysis suggests that the test is not as objective as it appears to be. Because a judge's decision is a reflection of her own values, she is unable to determine objectively what would be the “best” treatment or medical decision. Thus, the best interest test can fall prey to manipulation by judicial agendas just as easily as the substituted judgment criteria. This argument, however, fails to acknowledge the strength of a best interest test.

First, if the procedural safeguards are satisfied, see supra notes 5-23 and accompanying text, a court applying the best interest test will make its decision consistent with the weight of the evidence. Insofar as the court relies upon the evidence presented, its decision is objective. In cases involving a person mentally incompetent from birth, however, there is no evidence which a court applying substituted judgment can rely upon. This furthers the notion that substituted judgment not only fails to fully incorporate the evidence presented, but is a legal fiction with no tangible basis. Compare, however, Cardozo's eloquent caveat regarding the search for objectivity. Cardozo's words, nonetheless, may benefit the advocate for the developmentally disabled, illuminating for her the factors which judges consider when embarking upon such difficult decisions. See B. Cardozo, The Nature of the Judicial Process 10-13 (1921):

61 It may be argued that if the constitutional rights of the developmentally disabled are going to be fully protected, then their right to make a “foolish” decision must be upheld. But allowing a mentally disabled person to make a “foolish” decision, however, fails to fortify her constitutional rights in any significant way. Such a decision is based on ignorance, which inhibits the mentally disabled person from making an informed choice. Therefore, the constitutional right of freedom of choice, presumably protected by those supporting a substituted judgment analysis, would simply be a fiction because such a person is incapable of making such a choice in the first place.

62 Griswold v. Connecticut, 381 U.S. 479 (1965); Stanley v. Georgia, 394 U.S. 557 (1969); Eisenstadt v. Baird, 405 U.S. 438 (1972).

63 In re Quinlan, 70 N.J. 10, 40, 355 A.2d 647, 663, cert, denied, 429 U.S. 922 (1976) (“Presumably this right [of privacy] is broad enough to encompass a patient's decision to decline medical treatment under certain circumstances, in much the same way as it is broad enough to encompass a woman's decision to terminate pregnancy under certain conditions.“).

64 Bartling v. Superior Court, 163 Cal. App. 3d 186, 195, 209 Cal. Rptr. 220, 225 (1984) (“The right of a competent adult patient to refuse medical treatment is a constitutionally guaranteed right which must not be abridged.“); Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 1137, 225 Cal. Rptr. 297, 300 (1986) (“[A] patient has the right to refuse any medical treatment or medical service, even when such treatment is labeled ‘furnishing nourishment and hydration.’ This right exists even if its exercise creates a ‘life threatening condition.’ “) (footnote omitted).

65 See In re Quinlan, 70 N.J. at 10, 355 A.2d at 647; In Re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985).

66 See supra note 50.

67 See Note, supra note 52, at 372 n.46 (“The court's use of substituted judgment [in Saikewicz] is most inappropriate because Joseph Saikewicz had been profoundly retarded almost all of his life. He was never able to formulate any decisions or views about termination of treatment.“).

68 373 Mass. 728, 370 N.E.2d 417 (1977).

69 See generally City of Cleburne v. Cleburne Living Center, 473 U.S. 432, 442 n.9 (1985) (testimony of Dr. Philip Roos) (“Mentally retarded individuals fall into four distinct categories. The vast majority — approximately 89% — are classified as ‘mildly’ retarded, meaning that their IQ is between 50 and 70. Approximately 6% are ‘moderately’ retarded, with IQs between 35 and 50. The remaining two categories are ‘severe’ (IQs of 20 to 35) and ‘profound’ (IQs below 20). These last two categories together account for about 5% of the mentally retarded population.“).

70 373 Mass. at 729-30, 370 N.E.2d at 419.

71 Id. at 745, 370 N.E.2d at 427.

72 Id. at 750, 370 N.E.2d at 430.

73 Id. at 747, 370 N.E.2d at 428.

74 Id. at 752-53, 370 N.E.2d at 431.

75 Id. at 752, 370 N.E.2d at 431 (quoting In re Carson, 39 Misc. 2d 544, 545, 241 N.Y.S.2d 288, 289 (Sup. Ct. 1962)).

76 In re Moe, 385 Mass. 555, 573, 432 N.E.2d 712, 724 (1982) (Nolan, J., dissenting).

77 Id.

78 Id.

79 52 N.Y.2d 363, 420 N.E.2d 64, 438 N.Y.S.2d 266 (1981).

80 Id. at 375, 420 N.E.2d at 70, 438 N.Y.S.2d at 272.

81 Id. at 374, 420 N.E.2d at 69, 438 N.Y.S.2d at 271.

82 Id. at 375, 420 N.E.2d at 69, 438 N.Y.S.2d at 271.

83 Id. at 374, 420 N.E.2d at 69, 438 N.Y.S.2d at 271.

84 Id. at 380, 420 N.E.2d at 72, 438 N.Y.S.2d at 275.

85 Id. at 381, 420 N.E.2d at 73, 438 N.Y.S.2d at 275.

86 Id.

87 The Storar court found only marginal support in relying upon cases such as Jehovah's Witnesses v. King's County Hosp., 390 U.S. 598 (1968) and In re Sampson, 29 N.Y.2d 900, 278 N.E.2d 918 (1972). These cases can be distinguished from Storar. Mr. Storar had a terminal disease and whether he continued the blood transfusions or not, he would soon die. The children in the other cases, however, would survive indefinitely if the treatment were provided. Nevertheless, the cases are similar in that the patients in both types of cases would certainly die but for the treatment.

88 In re Storar, 52 N.Y.2d at 381, 420 N.E.2d at 73, 438 N.Y.S.2d at 275.

89 Id. at 382, 420 N.E.2d at 73, 438 N.Y.S.2d at 275.

90 In re Conroy, 98 N.J. 321,392, 486 A.2d 1209, 1246(1985) (Handler, J., concurring in part) (quoting In re Grady, 85 N.J. 235, 274, 426 A.2d 467, 487 (1981) (Handler, J., concurring)); cf. W. Shakespeare, Richard III, Act I, Scene 1 (M. Eccles, ed. 1964) (“I, that am curtailed of this fair proportion,/ Cheated of feature by dissembling Nature,/ Deformed, unfinished, sent before my time/ Into this breathing world scarce half made up,/ And that so lamely and unfashionable/ That dogs bark at me as I halt by them.“).

91 Cf. Rhoden, supra note 29, at 387-88.

92 Storar provides little guidance on how to determine what is in the best interest of a developmentally disabled patient. Essentially, the court weighs the patient's dislike for the transfusions against the apparent benefit he derives from receiving the transfusions.

93 Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 733, 370 N.E.2d417, 421 (1977).

94 Id. at 734, 370 N.E.2d at 421.

95 Id.

96 In John Storar's case, the court would weigh the psychic distress and minimum pain of the blood transfusions, along with his increased energy level and the continuance of his “usual activities,” all a result of continuing the tranfusions, against his deteriorating condition and inability to “carr[y] on many of his usual activities,” which would occur if the transfusions were stopped. Additionally, without the transfusions, Storar would likely bleed to death prior to the three to six months he had left to live. In such a case, an assessment of the benefits of continuing the treatment, in conjunction with the minimum pain, would lead the court to do as it did, order the transfusions continued. Indeed, such an analysis is similar to the one competent patients also conduct when considering whether to terminate a life-sustaining treatment.

In Joseph Saikewicz's case, however, a court, using this test would still decide that the chemotherapy should not be performed. The court would reach this decision by balancing the considerable pain and fear associated with the chemotheraphy treatments, against the fact that Saikewicz would be in little or no pain without the treatment and may even live as long. The court's consideration would account for: (1) Saikewicz's inability to continue his usual activities during the treatment; and (2) the treatment's anticipated rate of success was less than 50%.

97 In re Storar, 52 N.Y.2d at 375, 420 N.E.2d at 69, 438 N.Y.S.2d at 271.

98 An incompetent developmentally disabled patient may fear a relatively harmless procedure, and view it as more than just an “inconvenience.” The court should factor such emotional suffering into the psychological element of its analysis. Nevertheless, the court should not prohibit a harmless, though necessary, treatment especially if the benefits outweigh the relatively small burdens, on the basis of a palpable, though uninformed fear.

99 when discussing sterilization of the developmentally disabled, this Note will generally refer to women, “because it appears that the issue arises much more frequently with females than with males.” Scott, supra note 20, at 807 n.4.

100 In a much criticized and now outdated decision, Justice Holmes, writing for the Supreme Court, upheld a Virginia statute that authorized involuntary sterilization of mentally disabled inmates. In his opinion, Justice Holmes concluded that “[i]t is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…. Three generations of imbeciles are enough.” Buck v. Bell, 274 U.S. 200, 207 (1927). While never specifically overruled, Buck v. Bell has been assailed by judges and commentators alike. Most significantly, the court in Skinner v. Oklahoma, 316 U.S. 535 (1942), rejected an Oklahoma statute that authorized involuntary sterilization after a third conviction for a felony involving “moral turpitude.” The Skinner Court further held that procreation was a fundamental right. Id. at 541. Since Skinner, involuntary sterilization statutes have been considered unconstitutional absent a showing that such a statute “is the only remedy available to further a compelling governmental interest.” In re A.W., 637 P.2d 366, 368-69 (Colo. 1981); see also Tribe, L., American Constitutional Law 923 (1978)Google Scholar; Burgdorf, & Burgdorf, , The Wicked Witch is Almost Dead: Buck v. Bell and the Sterilization of Handicapped Persons, 50 Temp. L.Q. 995 (1977)Google Scholar; Murdock, supra note 48, at 921-24.

While the right to procreate has been upheld by the Court, so has its corollary: the right not to beget children. This right is rooted first in Griswold v. Connecticut, 381 U.S. 479 (1965), which, in establishing a constitutional right of privacy, rejected a Connecticut statute prohibiting the use of contraception by married couples. In so doing, the Court established the right of married couples to decide for themselves when to have children and when not to. This right to choose whether to procreate was extended in Eisenstadt v. Baird, 405 U.S. 438 (1972). Without being explicit, the Court seemingly extended the right to use contraception to unmarried persons as well, stating that “[i]f the right of privacy means anything, it is the right of the individual, married or single, to be free from unwarranted governmental intrusion into matters so fundamentally affecting a person as the decision to bear or beget a child.” Id. at 453 (emphasis in original). Finally, the right to control procreative decisions was most significantly upheld in Roe v. Wade, 410 U.S. 113 (1973). There, the Court upheld a woman's right to an abortion under certain circumstances. “[T]hese cases in conjunction with Skinner lead[] to the conclusion that an individual has the fundamental right not only to bear children, but to decide not to be the source of another life as well.” In re AAV., 637 P.2d at 369; see generally Note, supra note 1, at 100-02.

101 In re Grady, 85 N.J. 235, 252, 426 A.2d 467, 475 (1981).

102 Unlike the right to choose whether to continue life-sustaining treatment, many jurisdictions have ruled on the sterilization issue.

103 385 Mass. 555, 432 N.E.2d 712 (1982).

104 Id. at 557 n.1, 432 N.E.2d at 715 n.1.

105 Id. at 556-57, 432 N.E.2d at 715-16.

106 Id. at 565, 432 N.E.2d at 720 (quoting Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 746, 370 N.E.2d 417, 428 (1977)).

107 Id. at 566, 432 N.E.2d at 720.

108 Id. at 565, 432 N.E.2d at 720 (quoting Guardianship of Roe, 383 Mass. 415, 449 n.20, 421 N.E.2d 40, 60 n.20 (1981)).

109 Id. at 567-70, 432 N.E.2d at 721-22.

110 Id. at 570, 432 N.E.2d at 722 (quoting C.D.M. v. State, 627 P.2d 607, 613 (Alaska 1981)).

111 Id. at 573-74, 432 N.E.2d at 724 (Nolan, J., dissenting).

112 Id. at 573, 432 N.E.2d at 724 (Nolan, J., dissenting).

113 Id. at 574, 432 N.E.2d at 724 (Nolan, J., dissenting); see also Note, In re Debra B.: The Best Interest Standard in Court — Authorized Sterilization of the Mentally Retarded, 39 Me. L. Rev. 209, 214 n.19 (1987)Google Scholar (substituted judgment “based on the patient's previously expressed intent, is not feasible in cases [involving the developmentally disabled] because incompetency has … been present since birth and, therefore, no rational expression by the individual regarding sterilization has ever been made.“).

114 85 N.J. 235, 426 A.2d 467 (1981). Grady concerned a 19 year old developmentally disabled woman (Lee Ann) who had been cared for by her parents throughout her life. Lee Ann suffered from Down's Syndrome. As a result, she was severely mentally impaired and could do only simple things for herself— dress herself, watch television, play simple games, and so forth. While her mental capacity was very low, her biological age conformed with her chronological age. Because of this fact, and because it is clear from the evidence that Lee Ann would be unable to understand pregnancy or care for a child, her parents petitioned the court for authority to have their daughter sterilized. Lee Ann's parents sought ultimately to place their daughter in a group home for disabled adults and believed that sterilization would be an adequate precaution against her ever becoming pregnant, which they felt to be a realistic possibility “under the circumstances of their daughter's life.” Id. at 242, 426 A.2d at 470.

115 Id. at 261, 426 A.2d at 480-81 (emphasis in original).

116 The court held that neither society's nor the parent's interests in the disabled person's sterilization should compel authorization of the procedure. Id. at 262-64, 426 A.2d at 481-82. The court concluded that “[i]n determining whether to authorize sterilization, a court should consider only the best interest of the incompetent person, not the interests or convenience of society in having the incompetent person sterilized,” id. at 262 n.8, 426 A.2d at 481 n.8, thereby disagreeing with North Carolina Ass'n for Retarded Children v. North Carolina, 420 F. Supp. 451 (M.D.N.C. 1976). The court further concluded that “the constitutional right of reproductive autonomy is a right personal to the individual. While the parents may advise a child and participate in his decision, that decision belongs to the child, not to his parents.” In re Grady 85 N.J. at 264, 426 A.2d at 482 (citations omitted).

117 In re Grady, 85 N.J. at 266-67, 426 A.2d at 483.

118 637 P.2d 366 (Colo. 1981). This case dealt with a 12 year old girl who, despite being physically healthy, was “severely retarded.” Id. at 367. She did not understand human sexuality or physical maturation. Nevertheless, because of A.W.'s overnight school trips, the occasion for sexual intercourse, imposed or voluntary, could realistically arise.

119 Id. at 370.

120 Id.

121 Id. at 375.

122 It seems accurate to conclude that if the substituted judgment analysis were properlyconducted, the court should be concerned only with indications of the disabled person's wishes; interpreting those wishes is the job of a court that applies substituted judgment. The criteria discussed by the court in Moe are more appropriately applied to a best interest test than to a substituted judgment test. In re Moe, 385 Mass. 555, 565, 566, 432 N.E.2d 712, 719, 720 (1982).

123 93 Wash. 2d 228, 608 P.2d 635 (1980).

124 Id. at 237-38, 608 P.2d at 640-41.

125 Id. at 238, 608 P.2d at 641.

126 304 Pa. Super. 553, 450 A.2d 1376 (1982).

127 Id. at 564, 450 A.2d at 1382.

128 420 F. Supp. 451 (M.D.N.C. 1976).

129 See supra note 43 and accompanying text.

130 North Carolina Ass'n for Retarded Children, 420 F. Supp. at 455.

131 See supra notes 34-49 and accompanying text.

132 See, e.g.. In re A.W., 637 P.2d 366, 370 (Colo. 1981) (stating that “[t]he inconvenience of caring for the incompetent child coupled with fears of sexual promiscuity or exploitation may lead parents to seek a solution which infringes their offspring's fundamental procreative rights.“); cf. In re Grady, 85 N.J. 235, 264, 426 A.2d 467, 482 (1981) (citing Bellotti v. Baird, 443 U.S. 662 (1979)) (“While the parents may advise a child and participate in his decision, that decision belongs to the child, not to his parents.“); In re Hayes, 93 Wash. 2d 228, 236, 608 P.2d 635, 640 (1980) (“[C]onsent of a parent or guardian is a questionable or inadequate basis for sterilization.“); In re Terwilliger, 304 Pa. Super. 553, 564, 450 A.2d 1376, 1382 (1982) (where “the interests or convenience of the individual's parents” were refused consideration); In re Hillstrom, 363 N.W.2d 871 (Minn. Ct. App. 1985) (In a petition for sterilization, the court considered the best interests of the disabled person alone and not the interests of her parents.); but see Scott, supra note 20, at 826-63 (where it was concluded that parents caring for their developmentally disabled children are in the best position to determine what is in the best interest for their child). Professor Scott is correct that frequently parents can best make such decisions, but the courts should be included in the process because such requests necessarily implicate constitutional rights that must be represented and protected.

A concern for the interests of the parents may be inferred from the tests both in Grady and Hayes. One of the criteria cited in Grady was whether the incompetent person could care for a child, In re Grady, 85 N.J. at 267, 426 A.2d at 484. Similarly, Hayes considered the disabled person's potential as a parent. In re Hayes, 93 Wash. 2d at 236, 608 P.2d at 640-41. It could be argued plausibly that the respective courts considered such criteria because if the disabled person had little or no potential to be a parent, then the interest in sterilization would be greater. Specifically, the interest of those who would have to care for the disabled person's child would be enhanced by such a finding. In many conditions (though by no means in all), this would be the disabled person's own parents. Evidence of this conclusion comes from the facts in Grady, A.W., Terwilliger and Hayes, where the mentally disabled children in each case were cared for by their parents. Moreover, it was the parents, and not an institution or the state (which might make such a petition for public policy reasons), that petitioned to have their daughters sterilized. The interests of the parents, then, are apparently quite strong.

133 See supra note 20 and accompanying text.

134 Institutionalization can mean any one of a number of living conditions. Currently, the term can refer to group adult homes, half-way houses or respite homes. The term should no longer connote the ominous images of years ago, when institutionalization largely meant commitment in an insane asylum without treatment.

135 See e.g., Addington v. Texas, 441 U.S. 418, 425 (1979) (“This Court repeatedly has recognized that civil commitment for any purpose constitutes a significant deprivation of liberty that requires due process protection.“). In support of this proposition, the Court cited the following cases: Jackson v. Indiana, 406 U.S. 715 (1972); Humphrey v. Cady, 405 U.S. 504 (1972); In re Gault, 387 U.S. 1 (1967); Specht v. Patterson, 386 U.S. 605 (1967).

136 See People v. Reliford, 65 Ill. App. 3d 177, 184-85, 382 N.E.2d 72, 78 (1978) (“A court must be able to evaluate the opinion [of the medical expert] and make a decision whether treatment [which stems from the institutionalization] is in the person's best interest based on all relevant factors.“) (emphasis added).

137 65 Ill. App. 3d at 177, 382 N.E.2d at 72.

138 Id. at 182, 382 N.E.2d at 76 (quoting Humphrey v. Cady, 405 U.S. 504 (1972)).

139 Id. at 185, 382 N.E.2d at 78. There seems to be some confusion in the opinion over what standard to apply when determining whether the state interest is enough to compel institutionalization of the mentally disabled. The court reasoned that “[d]ue process requires that there be [only] a reasonable relationship between the State's purported interest in institutionalizing a person and the reasons for which the individual is ultimately committed.” Id. at 183, 382 N.E.2d at 77-78 (emphasis added) (citing Jackson, 406 U.S. at 738). The court, however, stated earlier in the opinion that “[f]orced institutionalization can only be justified by a recognized and substantial government interest.” Id. at 182, 382 N.E.2d at 76 (emphasis added) (citing O'Connor v. Donaldson, 422 U.S. 563, 575 (1975)). This interest appears to contrast with the “clear and convincing” standard enunciated in the first passage.

140 Parham v. J. R., 442 U.S. 584, 627 (1979) (Brennan, J., concurring in part, dissenting in part) (quoting O'Connor, 422 U.S. at 580 (Burger, C.J., concurring)).

141 Id.; see also Secretary of Pub. Welfare v. Institutionalized Juveniles, 442 U.S. 640, 651-52 (1979) (Brennan, J., concurring in part, dissenting in part).

142 The suggestion that to preserve a developmentally disabled person's constitutional rights she must be involuntarily institutionalized appears paradoxical. The inconsistency, however, can be explained. Constitutional protections must yield to reality. If a mentally disabled child's parents refuse to properly care for her, and insist upon institutionalization, courts have two choices. The first, a derivative of substituted judgment, is to determine what the disabled person would choose. If the conditions in an institution are better than those at home, the child would probably prefer institutionalization. This choice preserves the child's constitutional rights, but not at the expense of requiring the unwanted child to remain in the custody of parents who will not provide care. Second courts can be directed by what, according to the evidence, is in the best interests of the child. In such cases, courts will balance the lack of parental care against the prospect of an institutional setting. Faced with such a decision, courts which choose the first alternative in the name of constitutional protections are shirking the greater responsibility they owe to an incompetent litigant: the responsibility to protect her from an unintended and clearly uninformed choice.