Guardianship of Doe

• Citation: 583 N.E.2d 1263,411 Mass. 512
• Parties: , 2 NDLR P 245 GUARDIANSHIP OF Jane DOE.
• Decision Date: 06 January 1992
• Court: United States State Supreme Judicial Court of Massachusetts

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583 N.E.2d 1263 411 Mass. 512, 2 NDLR P 245 GUARDIANSHIP OF Jane DOE. Supreme Judicial Court of Massachusetts,
Norfolk. Argued Sept. 5, 1991.
Decided Jan. 6, 1992.

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Jonathan Brant, Boston, for the ward. [411 Mass. 513] Allegra E. Munson, Boston, Kim E. Murdock, Sp. Asst. Atty. Gen., Boston, with her, for department of Mental Retardation.

Frank Reardon, Boston, Mona Gross, Brookline, with him, for the guardian.

Before [411 Mass. 512] LIACOS, C.J., and WILKINS, ABRAMS, NOLAN, LYNCH, O'CONNOR and GREANEY, JJ.

[411 Mass. 513] ABRAMS, Justice.

We are asked to decide whether a judge correctly determined that a profoundly retarded woman in a persistent vegetative state would choose, were she competent, to terminate her nasoduodenal feeding and hydration. After hearing, the judge made careful, detailed written findings and concluded that the woman, Jane Doe (a pseudonym), would choose to do so. Doe's parents agree with the judge's determination.

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Doe's permanent guardian (guardian), the guardian ad litem (GAL), and Doe's physicians agree with the judge's determination. ¹ The Department of Mental Retardation (department), the agency responsible for Doe's care, also supports the judge's determination. Counsel for Doe, however, argues that we should vacate the judge's order because the judge applied an incorrect standard of proof. ² We affirm the judgment.

I. Prior proceedings. In September, 1989, the department petitioned the Probate and Family Court Department to appoint a guardian to make medical decisions for Doe. Doe's parents declined to be appointed guardians, and opposed a proposal to replace her nasoduodenal feeding and hydration tube with a surgically-implanted percutaneous endoscopic gastrostomy (PEG) tube. ³ The judge appointed a GAL and [411 Mass. 514] counsel for Doe. Thereafter, the judge appointed a temporary guardian, and later the temporary guardian became Doe's permanent guardian.

In May, 1990, Doe's guardian filed a petition requesting the judge to authorize the "withdrawal of the nasoduodenal tube through which [Doe] is presently receiving hydration and nutrition." On the same day, the GAL filed his third and final report with the court. In it, the GAL stated that "[t]here is no hope of either arresting or reversing [Doe's] degenerative neurological disease. If the ultimate question is to only prolong the dying process of a persistent vegetative patient with no hope of regaining cognitive functioning, then ... [Doe] would consent to the withholding of treatment including nutrition and hydration."

The petition filed by Doe's guardian asked the judge "to determine whether [Doe] is capable of making informed decisions regarding the continuation of her medical treatment including, but not limited to, the provision of hydration and nutrition by nasoduodenal tube." The petition further requested the court, if it were to find that Doe was incompetent, to grant authority for "(1) [t]he withholding of invasive medical and surgical procedures; (2) [t]he withholding of life support medications and treatments, including, but not limited to, antibiotics; [and] (3) [t]he withdrawal of the nasoduodenal tube through which [Doe] is presently receiving hydration and nutrition."

The judge held a hearing on June 8, 1990, to consider the guardian's general petition. At the hearing, both the guardian and counsel for Doe agreed that Doe was incompetent, that she existed in a persistent vegetative state, and that there was no hope for improvement in her condition. The guardian also stated that Doe's parents supported the petition. ⁴ [411 Mass. 515] ⁴ The judge allowed the petition and ordered termination

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of nasoduodenal feeding and hydration. Counsel for Doe appealed. We allowed his application for direct appellate review.

II. The medical facts. The medical facts are not in dispute and are as follows. Jane Doe is a thirty-three year old, profoundly retarded woman, who exists in a "persistent vegetative state." ⁵ Doe has been mentally retarded since infancy. Doe suffers from Canavan's disease, ⁶ which causes a progressive destructive of the central nervous system. ⁷ There is no possibility that her condition will improve. In 1988, Doe's doctors confirmed the diagnosis of Canavan's disease by a biochemical test first used in 1986. Verification of the diagnosis is significant in that it establishes that there is no hope for a reversal of Doe's condition.

Doe spent the first five years of her life at home with her parents and older brother. During the years Doe was at home, she was hospitalized repeatedly for a variety of ailments. [411 Mass. 516] In 1963, when Doe's mother became pregnant with her third child, ⁸ Doe was admitted to the Wrentham State School (Wrentham).

In 1982, Doe had severe difficulty swallowing and repeatedly aspirated food fed to her by conventional means. Doe's physicians moved her to the Wrentham State School Medical Center (infirmary) and employed a nasoduodenal tube for feeding and hydration. Neither Doe nor her parents--nor, indeed, anyone--consented to the placement of the tube. Since 1982, Doe has received all her nutrition and hydration through the nasoduodenal tube.

Doe is dependent on the staff at Wrentham for all aspects of her care. ⁹ Doe's limbs are rigidly flexed, her joints contracted, her muscles atrophied and her bones extremely brittle. Doe breathes through a permanent tracheostomy necessitated by the tendency of her tongue to swell and block her airway. Doe is incontinent of both bladder and bowel and requires regular catheterizations and enemas.

Doe displays no awareness of herself or her surroundings. Doe "carries out no volitional activity, nor does she show any cognitive response to any type of sensory stimulus"--including stimuli calculated to cause intense pain in a conscious individual. ¹⁰ She exhibits no facial expressions and

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does not speak. She suffers from both cortical blindness and deafness, and she cannot feel or smell. Doe does not experience hunger or thirst; she is without emotion of any sort. Though her functioning brainstem allows Doe to breathe on [411 Mass. 517] her own by means of a tracheostomy, she suffers from "a total loss of cerebral functioning."

III. The right to refuse treatment. ¹¹ Competent individuals have the right to refuse medical treatment. Norwood Hosp. v. Munoz, 409 Mass. 116, 122, 564 N.E.2d 1017 (1991). They have a concomitant right to discontinue medical treatment. Brophy v. New England Sinai Hosp., Inc., 398 Mass. 417, 438, 497 N.E.2d 626 (1986).

The right to refuse treatment or to discontinue treatment is based on a person's strong interest in being free from nonconsensual invasions of the person's bodily integrity. See Munoz, supra 409 Mass. at 122-123, 564 N.E.2d 1017; Brophy, supra 398 Mass. at 430, 497 N.E.2d 626; Harnish v. Children's Hosp. Medical Center, 387 Mass. 152, 154, 439 N.E.2d 240 (1982); Matter of Spring, 380 Mass. 629, 634, 405 N.E.2d 115 (1980); Commissioner of Correction v. Myers, 379 Mass. 255, 261, 399 N.E.2d 452 (1979); Superintendent of Belchertown St. Sch. v. Saikewicz, 373 Mass. 728, 738-739, 370 N.E.2d 417 (1977). See Cruzan, 110 S.Ct. 2841, 2846-2847 (1990). In re Storar, 52 N.Y.2d 363, 376-377, 438 N.Y.S.2d 266, 420 N.E.2d 64, cert. denied, 454 U.S. 858, 102 S.Ct. 309, 70 L.Ed.2d 153 (1981); In re Quinlan, 70 N.J. 10, 38-42, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922, 97 S.Ct. 319, 50 L.Ed.2d 289 (1976). Because "the value of human dignity extends to both [competent and incompetent] individuals," Saikewicz, supra 373 Mass. at 745, 370 N.E.2d 417, incompetent individuals have the same rights as competent individuals to refuse and terminate[411 Mass. 518] medical treatment. Custody of a Minor (No. 3), 378 Mass. 732, 745, 393 N.E.2d 836 (1979). Saikewicz, supra 373 Mass. at 736, 370 N.E.2d 417. The fact that a person is incompetent should not result in the denial of that person's right to be free from nonconsensual invasions of bodily integrity. See Matter of Moe, 385 Mass. 555, 566, 432 N.E.2d 712 (1982).

The doctrine of substituted judgment is the means by which incompetents may exercise their right to refuse or terminate treatment. We have explained the doctrine in the following way. The judge, after hearing, must try to identify the choice "which would be made by the incompetent person, if that person were competent, taking into account the present and future incompetency of the individual as one of the factors which would necessarily enter into the decision-making process of the competent person." Saikewicz, supra 373 Mass. at 752-753, 370 N.E.2d 417.

Lack of a prior expressed intention regarding medical treatment does not bar use of the doctrine of substituted judgment. See Moe, supra 385 Mass. at 566, 432 N.E.2d 712; Matter of Spring, supra 380 Mass. at 640, 405 N.E.2d 115. Accord

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Foody v. Manchester Memorial Hosp., 40 Conn.Supp. 127, 482 A.2d 713 (1984); Guardianship of Barry, 445 So.2d 365, 371 (Fla.App.1984); Estate of Longeway, 133 Ill.2d 33, 50, 139 Ill.Dec. 780, 549 N.E.2d 292 (1989). Cf. Guardianship of Weedon, 409 Mass. 196, 565 N.E.2d 432 (1991). We recognize that in situations in which there is an attempt to use substituted judgment for a never-competent person, it is a legal fiction. It is the legal mechanism by which society (at least in Massachusetts) attempts to vindicate liberty interests, albeit through a legal fiction. We are also aware that therefore "the substituted judgment [doctrine] is ... difficult to apply." Guardianship of Roe, 383 Mass. 415, 444 n. 16, 421 N.E.2d 40 (1981). That difficulty, however, "provides inadequate justification for denying its benefits...." Id. "While it may ... be necessary to rely to a greater degree on objective criteria [in the case of a never-competent person] ... the effort to bring the substituted judgment into step with the values and...