Holum v. Morgan

JUSTICE LINN

delivered the opinion of the court:

C.A. was born several weeks prematurely, suffering from severe cocaine withdrawal and a myriad of complications that resulted in her being placed on an apnea cardiac monitor and ventilator. She was also found to have a large amount of HIV (human immunodeficiency virus) in her blood. Because of her condition and the inability of her 19-year-old parents to care for her, the Illinois Department of Children and Family Services (DCFS) filed a petition for adjudication of wardship in the juvenile division of the circuit court of Cook County. Thomas E. Holum was appointed guardian ad litem (GAL). Gary T. Morgan, the guardianship administrator of the DCFS, was appointed temporary custodian with the right to consent to medical treatment. Subsequently, the court entered a dispositional order vacating Morgan’s temporary custodianship and appointing him guardian of the child.

The DCFS filed a supplemental petition in the juvenile court for instructions and for authority to consent to the entry of a “do not resuscitate” (DNR) order on C.A.’s medical charts. The petition alleged that C.A.’s medical condition had deteriorated and that the hospital had obtained from C.A.’s parents a letter stating their desire that their daughter receive treatment to alleviate her pain or improve her life, but not to resuscitate her if she stopped breathing or if her heart stopped.

After a hearing, the juvenile court granted the petition and entered an order finding it to be “in the best interest of the minor” for the DCFS “to act in accordance with the recommendations of the treating physicians” of the patient. That order was stayed pending this appeal.

The GAL raises a number of challenges to the trial court’s order. One is directed at the court’s authority to enter the order under the Juvenile Court Act of 1987 (Ill. Rev. Stat. 1991, ch. 37, par. 801 — 1 et seq.); another challenges the guardian’s standing to petition for consent to withhold medical treatment; and a third questions whether the evidentiary showing in this case was sufficient to justify entry of a DNR order. Finally, the GAL challenges the constitutionality of the newly enacted Health Care Surrogate Act (Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 1 et seq.), legislation that became effective 10 days after the entry of the trial court’s order in this case.

Background

The baby was born on October 23, 1990. She was small for her gestational age (fifth percentile) and was experiencing interventricular hemorrhaging, which means that the blood vessels in her brain were quite weak and subject to spontaneous rupture. She required the use of a cardiac monitor and mechanical ventilation for weeks after her birth.

C.A.’s mother, herself a ward of the court, was 19 years old with a juvenile record and a history of drug abuse. She had no regular residence and lived on the street. She had given birth to another child, Jonathon, by a different father, and that child also had been adjudged a ward of the court and placed in foster care. C.A.’s mother had not seen or visited Jonathon for over a year. C.A.’s father, an American Indian, was also 19 years old. He, too, had a drug problem. The two youths were not married and did not have a stable relationship.

The juvenile court found, by order of March 21, 1991, that the minor’s parents were unwilling and unable to care for her and that it was in C.A.’s best interests to be made a ward of the court with Gary T. Morgan acting as her guardian.

On July 10, 1991, the DCFS filed a supplemental petition for instructions, alleging that C.A.’s medical condition had deteriorated and that the hospital in which she was being treated had requested and received from C.A.’s parents permission to place a DNR order in her medical charts. Although the DCFS concurred with the hospital’s request, the agency sought the court’s instruction as to its authority to consent to the DNR order in accordance with the wishes of the biological parents and doctors.

On July 11, a hearing on this petition began. Dr. Rebecca Simmons, C.A.’s attending physician, testified as to her credentials and the court found her qualified in the fields of pediatrics and neonatalogy. Dr. Simmons testified that the baby’s diagnosis was “HIV, status post-necrotizing, and prematurity.” “Necrotizing” is an infection of the bowel that results in the death of tissue and requires removal of part of the bowel. In her opinion, C.A.’s prognosis was “terminal,” meaning that her death would most likely result within the next year, based on statistics.

C.A. was being given two drugs “for her AIDS” and she had been given a “central line for intravenous feeding.” She had a tracheostomy. The doctor testified that the appropriate treatment for C.A. at the time was to “continue her HIV medications; to continue her central line feedings, intravenous feeding, and to continue to carry her tracheostomy.” Dr. Simmons testified that in her professional opinion, it would not be in C.A.’s best interest for doctors to attempt resuscitation if her heart stopped beating or she ceased breathing. The witness testified that it would be in the infant’s best interests, however, to continue the medication for HIV and to keep the central line and tracheostomy in place.

Dr. Simmons testified that the baby was fully conscious and aware of her surroundings. She interacted with others socially, but not “normally.” At eight months, she was “very developmental^ delayed,” functioning neurologically like a four-month-old child. C.A.’s HIV would severely impair her in the future. Asked if death was “imminent,” Dr. Simmons stated that it “could be imminent. It could be very unexpected.” The infant had already suffered a cessation of breathing and heart functioning in the past and she was, in the witness’ opinion “at high risk for sudden death.”

The hospital had resuscitated C.A. by using CPU and had inserted a catheter into her heart. Dr. Simmons said that the child was uncomfortable and cried a lot. She was incapable of eating by herself at the time of the hearing and her condition had worsened because of the tracheostomy. C.A. had been feeding normally until the necrotizing bowel problem. Since then she had had two surgeries. At the time of the hearing, she was able to defecate normally.

Dr. Simmons gave her opinion, within a reasonable degree of medical certainty, that C.A. would not improve to have a normal life. She also stated that C.A. was under sedation for her comfort and it would be in her best interest not to resuscitate her if her heart or breathing stopped. It would be in her best interest to stop her suffering. She was in complete agreement with the parents’ wishes, as memorialized in their letter.

Further questioning involved C.A.’s HIV infection. Dr. Simmons said that the doctors believed that the HIV contributed to the necrotizing of the bowel. C.A. could not eat properly at the time and continued to vomit up her food.

The hearing was continued to September 13 so that a second physician’s opinion could be obtained.

Elizabeth Gath, an attending physician in the departments of internal medicine and pediatrics at Cook County Hospital, testified that she is associate director of the Women and Children With AIDS program. She is licensed to practice medicine in three States. The court found her qualified as an expert witness.

Dr. Gath reviewed C.A.’s medical records and charts but did not examine the infant herself. At the time of Dr. Gath’s testimony, C.A. was 11 months old. After stating the diagnoses of the child, Dr. Gath was asked about the “profoundly compromised” state of C.A.’s immune system, due to the large amount of the virus in her blood. Dr. Gath explained that the virus ultimately causes the syndrome known as acquired immunodeficiency (AIDS). One of the measures used to test the immune system is a count of the T-cells, a subset of a type of white blood cell known as a lymphocyte. The T-4 helper cells are the ones injured by the virus. Normal children have a T-4 cell count of about 3,000. C.A.’s count was only 300. This places her at risk for multiple infections and complications. At the time of the hearing, C.A. was being treated with AZT, which does not cure HIV but prolongs life. She was also being given a medication to help fight a type of pneumonia that children with HIV are particularly susceptible to getting.

Dr. Gath testified that she was aware of two incidents of resuscitation that were necessary, one at C.A.’s birth and one on March 1 of 1991. The first episode was a result of the premature birth and the second was a spontaneous cessation of breathing, which is not uncommon in premature infants. The doctor was in agreement with the treatments and medications being administered. She said it was significant that C.A. was diagnosed as HIV-infected prior to her first birthday because it indicates the more severe form of illness. Statistically, a child who exhibits this condition will be dead by her third or fourth birthday.

Dr. Gath was asked whether she was in agreement with the potential placement of a DNR order in C.A.’s charts. She said that the parents’ written wishes seemed an appropriate indication of parental concern. She also said she was concerned that “we may be doing the right thing, do not resuscitate, perhaps for the wrong reason,” although she did not explain that remark. The witness did note that the child had multiple problems but that they seemed to be “quiescent” at the moment. In other words, C.A. was feeding and was not infected with anything at the time. The problems C.A. had, however, were “longstanding and ongoing. She’s suffered two interventricular hemorrhages. She is neurodevelopmentally delayed, either because of the hemorrhages or because of the hypoxia as a result of the two resuscitative efforts.” “Hypoxia” is low oxygen in the brain which would cause brain damage. In response to a later question from the court asking whether the hypoxia was caused by the resuscitation, the witness answered in the negative and explained that breathing problems and the resulting loss of oxygen in the brain could have been caused by C.A.’s prematurity.

Dr. Gath further testified that C.A. was stabilized at the time but that she would require a resuscitation in the future and at that point “it would seem prudent if the family and the attending physician at that time feels that this child could not be resuscitated from it, that it would seem prudent not [sic] to have a resuscitative order.”

“Do not resuscitate” means do not give cardiac compression or intubation. “Intubation” means placing a tube directly into the lungs and having a machine breathe for the child. Other “aggressive measures” that could be used to revive someone include vasopressors, which are medicines that would keep blood pressure elevated if the blood pressure dropped precipitously.

C.A. continued to be fed through a tube and could not swallow properly. She continued to vomit. There was no current evidence of necrotizing of the bowel. Her T-cell count would not have been raised from the HIV medications. The virus suppresses the T-4 helper cells and gets “into all systems of the body, including the bone marrow, which can then cause suppression of all cell lines, platelets, white cells, red cells. It can cause profound anemia. It can cause profound bleeding disorders. It can cause susceptibility to multiple types of infections, infections that persons with a normal immune response would not be susceptible to.”

Dr. Gath was aware of approximately 3,000 children in the nation whose diagnosis of AIDS-defining illnesses were reported since 1982. Of those, a significant number were found to be HIV-infected by their first or second birthday, and of that group, 80% died by their third birthday.

Dr. Gath testified that C.A. was not in a comatose or vegetative state and, although she had a terminal illness, her death was not necessarily “imminent” in the sense of happening within a matter of days or weeks, at least as far as could be determined from the medical records. According to a letter from a physician regarding the infant’s neurological deficits, C.A. was neurodevelopmentally two months old when she was chronologically 11 months old. Finally, Dr. Gath testified that the child was suffering because of the tube down her esophagus and the vomiting.

The final witness was Randi Gurian, a social worker with the DCFS, assigned to the neonatal intensive care unit at Children’s Memorial Hospital. She had been involved in the case since the birth of C.A. and knew both parents, especially the mother. Gurian testified that she typed the letter that the parents dictated to her following counseling as to C.A.’s condition and prognosis. At the time the letter was written, March 21, 1991, the baby had been critically ill for approximately three weeks. The parents came to her office asking to talk to Gurian about what would happen to their daughter. They continuously stated that they wanted everything done for her and hoped she would recover. The parents asked if the doctors thought C.A. would eventually die of AIDS. The mother said she did not want C.A. to suffer and that everything should be done to increase the baby’s comfort. The father agreed that there should be no extraordinary measures to resuscitate C.A. and that it had taken the baby’s mother a longer time to reach that conclusion. Gurian testified that she then contacted the primary nurse and attending physicians and after reviewing the situation the doctors asked if the parents wanted a DNR order in the event the child’s heart or breathing stopped. The parents asked Gurian to help them write the letter, which they dictated and signed.

Afterwards, Gurian saw the mother on several occasions but not the father. Neither parent had communicated any desire to withdraw their letter requesting the DNR order. The mother reiterated that she wanted her daughter to live but that if her heart stopped, she did not want anyone to pound on her and did not want any more machines.

At the time of the hearing, C.A. was in a specialized foster home.

During closing remarks, the attorney for the DCFS emphasized that he was “not asking the Court today to issue an order to do not resuscitate on this minor. What the department is asking is that it is in the best — that this Court find that it is in the best interests of the minor and that the department will do no harm if we give our authorization to the treating physician to issue a do not resuscitate order. This will be at such time as the treating physician feels that it is necessary and proper.”

The GAL stated in response that he relied primarily on the Illinois Supreme Court cases of In re Estate of Longeway (1989), 133 Ill. 2d 33, 549 N.E.2d 292, and In re Estate of Greenspan (1990), 137 Ill. 2d 1, 558 N.E.2d 1194. According to the GAL, “under those cases *** the DCFS request is premature in this case.” The GAL argued that C.A. was not in a coma or vegetative state, her death was not imminent, and she was not terminally ill. Also, under the “substituted judgment” test set out in the supreme court cases, C.A. could not have expressed any preference as to the termination of medical treatment because she is a minor.

The court took the matter under advisement and issued its ruling on September 16, 1991. On that date the court found that after reviewing all of the evidence and cases, it was in the “best interest of the minor for the Illinois Department of Children and Family Services to act in accordance with the recommendations of the treating physician at the [hospital] and it is so ordered.” At the request of the GAL, the court stayed the order and we have also granted a stay pending appeal.

Opinion

I

During oral argument on appeal the GAL focused on the sufficiency of the evidence and the applicability of the Surrogate Health Care Act to this case. (Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 1 et seq. (eff. Sept. 26, 1991).) The GAL stopped short of expressly conceding the first two issues he raised in his brief, which concern the juvenile court’s jurisdiction and the court-appointed guardian’s authority to seek approval of a DNR order for the ward; however, the GAL admitted that the juvenile court could approve such an order under certain circumstances. Apparently, the GAL’s chief concern was that by permitting the guardian to consent to a DNR order in this case, the juvenile court failed to apply appropriate standards that would safeguard children in C.A.’s position. The GAL also charged that there was a “total failure of evidence” to support the need for the DNR order itself.

In contrast, the DCFS argued that the case does not involve the sufficiency of the evidence, which was uncontested, but instead involves the propriety of the court’s grant of authority to the guardian to consent to the entry of a DNR order at such time as the treating physicians believe it is a necessary and proper order, given the medical condition of the child. The DCFS also asserted that the new Surrogate Health Care Act does not apply, but even if it did, its aims were fulfilled in this case.

In defining the circumstances under which life-sustaining medical treatments may be withheld from a patient, the courts assume a difficult role. New other intersections between the law and medicine involve issues that so strongly implicate moral, religious, or philosophical beliefs. This court must carefully review legal precedent, to the extent it exists, and determine whether the trial court in this case exceeded its authority, abused its discretion, or otherwise entered an improper order. If not, we must affirm.

There is little doubt that if this case involved an otherwise healthy ward of the court who needed a blood transfusion or organ transplant, the guardian would have consented, the court would have approved, and no one would have appealed from the determination. If, however, that same child were the offspring of Jehovah’s Witnesses, who objected to the child’s receiving blood transfusions, a more difficult case would be presented. (See People ex rel. Wallace v. Labrenz (1952), 411 Ill. 618, 104 N.E.2d 769 (Despite parents’ religious objections, infant would receive blood transfusions to save her life).) If the child were 17 years old instead of an infant, and firmly expressed the desire to follow her religious beliefs to the exclusion of the life-saving operation, the outcome under Illinois law would be to respect the mature minor’s decision. In re E.G. (1989), 133 Ill. 2d 98, 549 N.E.2d 322.

The first example involves a consensus of opinion that organ transplants to save lives are necessary and desirable. The second and third examples illustrate what happens when a minority religious viewpoint clashes with societal norms and the medical establishment. The ultimate issue, then, is who is in the best position to decide (and who gets to decide who will decide). See also Curran v. Bosze (1990), 141 Ill. 2d 473, 566 N.E.2d 1319 (In light of mother’s opposition, court would not find it in the best interests of 3V2-year-old twins to undergo bone marrow harvesting to possibly save life of their half-brother).

A

THE COMMON LAW BASIS FOR DISCONTINUANCE OF LIFE-SUSTAINING TREATMENT

Traditionally, the law has preserved a patient’s right to self-determination, even when he decides against life-sustaining medical treatment. (See In re Estate of Longeway (1989), 133 Ill. 2d 33, 44, 549 N.E.2d 292, 297 (Common law right to consent to or refuse medical treatment — which is rooted in “sacred” right to “personal inviolability” — provides the legal authority for a patient to refuse treatment, including artificial nutrition and hydration); see also Corlett v. Caserta (1990), 204 Ill. App. 3d 403, 412, 562 N.E.2d 257 (Patient’s fundamental right to consent to medical treatment is found in the Federal Constitution and Illinois’ common law).) When the patient is not competent, or his desires are not ascertainable, other factors must be considered before life-sustaining treatments are discontinued. (See, e.g., In re Estate of Greenspan (1990), 137 Ill. 2d 1, 558 N.E.2d 1194 (The guardian of an incompetent has the duty to act in the ward’s bests interests, but if the patient’s previously expressed desire as to medical treatment conflicts with the guardian’s determination of the ward’s best interests, court will apply the “substituted judgment” test, which requires clear and convincing evidence of the patient’s intent); see also Guidelines For State Court Decision Making In Authorizing Or Withholding Life Sustaining Medical Treatment (1991) (printed by West Publishing Company on behalf of the National Center For State Courts (LSMT guidelines)).) Before we reach specific guidelines that legislatures and courts have fashioned to handle such situations, we address the juvenile court’s statutory jurisdiction to enter orders affecting a ward’s medical treatment, including the entry of a DNR order.

B

THE JUVENILE COURT GUARDIAN’S AUTHORITY TO CONSENT TO DNR ORDER

What is the primary issue in this case? What are the standards for deciding when a DNR order may be placed on a ward’s charts when the ward’s interests are represented by a court-appointed guardian under the Juvenile Court Act? To answer these questions we look first to the court’s power under that act.

Section 2 — 11 permits the court during temporary custody to approve “medical, dental, or surgical procedures if such procedures are necessary to safeguard the minor’s life or health.” Section 2— 27(1)(d), which applies to the legally appointed custodian’s or guardian’s power after appointment, allows him to consent to “major medical and surgical treatment.” (Ill. Rev. Stat. 1991, ch. 37, pars. 802 — 11, 802 — 27(101)(d).) In our view, these provisions support the guardian’s general standing to petition the court for authority to consent to a medical judgment made by the ward’s treating physicians, even when that judgment is to discontinue life-sustaining medical treatment. The court is charged with ruling on all matters presented to it regarding the welfare of the child. Moreover, the Juvenile Court Act provides for court review of matters affecting the ward on a regular basis. For example, the guardian is required, periodically, to file reports in the court to ensure that case plans involving the wards are being implemented. See Ill. Rev. Stat. 1991, ch. 37, par. 802 — 28(2).

In Illinois, no court of review has addressed whether the Juvenile Court Act provides judges with authority to consent to the placement of a DNR order on a minor ward’s medical chart. Other jurisdictions have accepted the authority of a juvenile court to approve such an order, however. In Custody of A Minor (1982), 385 Mass. 697, 434 N.E.2d 601, the child was suffering from a terminal cardiac condition with no known cure and was on a respirator. The hospital sought entry of a DNR order and the Massachusetts trial court found that it would be in the child’s best interest not to be resuscitated if he went into cardiac or respiratory arrest. On appeal, the supreme judicial court affirmed, holding that once a child in need of care and protection is committed to the Department of Social Services, the juvenile court has authority to make medical care decisions, including the one in question. See also In re Guardianship of Hamlin (Wash. 1984), 102 Wash. 2d 810, 689 P.2d 1372 (Court held that court-appointed guardian of ward with mental age of one year had statutory authority to consent to termination of life support systems, even without court intervention, but that any interested party could file petition in court and court would intervene in cases of conflict between hospital, prognosis committee, attending physicians, or guardian); In re L.H.R. (Ga. 1984), 253 Ga. 439, 321 S.E.2d 716 (Subject to certain safeguards, parents or legal guardian of terminally ill infant or incompetent adult in comatose state could consent to removal of life support without prior judicial intervention). See also Annot., Judicial Power To Order Discontinuance of Life-Sustaining Treatment, 48 A.L.R.4th 67 (1986).

Our juvenile court is charged with implementing its legislative mandate to care for those minors found to be in need of the State’s protection. We believe that the court acted properly in hearing the petition and in concluding that C.A.’s guardian could consent to the placement of a DNR order on her charts under certain conditions.1

II

The more difficult issue is whether the court exercised its power properly, given the evidence presented. The GAL focuses his arguments on this aspect of the case, urging us to reverse the order as being entered without legal standards or sufficient evidence. He argues that the Illinois Supreme Court in Longeway and Greenspan set forth governing standards that were not met in this case. Specifically, he asserts that those cases require clear and convincing evidence that a patient’s death be “imminent,” which he argues was not established here. He further contends that the juvenile court in this case improperly used the “best interests” standard in granting consent rather than the “substituted judgment” test of Longeway and Greenspan.

WHICH STANDARD APPLIES IN CASES OF MINOR WARDS?

Both Longeway and Greenspan involved adult patients whose decision-making capacity was nonexistent at the time their guardians sought the cessation of life-sustaining medical treatments. Both, however, had clearly expressed their desire (while still competent) that they not be kept alive artificially or allowed to linger. Both patients were in their seventies and would not recover from their disabilities, but were being kept alive by artificial nutrition and hydration. Neither had executed a living will (Ill. Rev. Stat. 1987, ch. 1101/2, par. 701 et seq.) or a health care power of attorney (Ill. Rev. Stat. 1987, ch. 1101/2, par. 804 — 1 et seq.).2

In Longeway the court borrowed the definition of “terminal illness” from the Illinois Living Will Act and held that a terminal condition is one in which (1) death is imminent and (2) death-delaying procedures serve only to prolong the dying process. (Longeway, 133 Ill. 2d at 47.) In such a case, the withdrawal of feeding and hydration tubes would be permitted. In Greenspan, the court commented that the “imminence” of a patient’s death “must be judged as if the death-delaying procedures were absent.” (Greenspan, 137 Ill. 2d at 21.) Under that reasoning, the court held that Mr. Greenspan’s death would occur within a week after withdrawal of the feeding tube and was thus “imminent,” or near at hand. Finally, to safeguard the patient pending any legislative modification of the common law, Greenspan held that a surrogate decision maker can exercise the patient’s right to forego artificial hydration and nutrition only if, in addition to the terminal illness of the patient, “the incompetent has been diagnosed as irreversibly comatose or in a persistently vegetative state”; the incompetent’s treating doctor and two other consulting doctors have concurred in the diagnosis; “the incompetent’s right outweighs any interest of the State, as it normally does”; it is ascertained what the incompetent presumably would have decided if competent under the circumstances; and “a court enters an order allowing the surrogate to exercise the incompetent’s right to refuse the treatment.” Greenspan, 137 Ill. 2d at 16, 558 N.E.2d at 1201.

The GAL, in the pending case, argues that C.A.’s condition was not terminal under the Greenspan definition and that she was not in a coma or persistent vegetative state. He further argues that since Longeway and Greenspan require clear and convincing evidence that the patient would want the treatment discontinued, under the substituted judgment test, the trial court in this case lacked the power to apply the best interests standard. Without elaboration, the GAL states that it “is clear” that a best interests standard “is not susceptible of proof by clear and convincing evidence.”

We reject the argument that the trial court was bound to apply the substituted judgment test when almost by definition an infant has no articulable judgment to be substituted. Because wards of the court are not in the care of their biological parents, representatives of the State step in to act in parens patriae. Section 2 — 22 of the Act expressly requires the trial court to adhere to the “best interests of the minor and the public” in dispositional hearings concerning wardship. (Ill. Rev. Stat. 1991, ch. 37, par. 802 — 22.) In practice, the determination of whether a proposed course of action is actually in the child’s best interests may be subject to differing opinions. See People ex rel. Wallace v. Labrenz (1952), 411 Ill. 618, 104 N.E.2d 769 (right of child to life-sustaining transfusions prevails over religious views of parents); In re Quinlan (N.J. 1976), 70 N.J. 10, 355 A.2d 647 (After much anguish, and with support of church, patient’s father sought to be appointed guardian for comatose daughter for withdrawal of artificial respirator (but not feeding tubes)); Cruzan v. Director, Missouri Department of Health (1990), 497 U.S. 261, 111 L. Ed. 2d 224, 110 S. Ct. 2841 (Patient’s parents sought withdrawal of comatose daughter’s feeding tubes because of their belief she would want discontinuance of life-support); see also Barber v. Superior Court (1983), 147 Cal. App. 3d 1006, 1018-19, 195 Cal. Rptr. 484, 491 (In dismissing murder prosecution against doctors who discontinued a patient’s life-support system at family’s request, court suggested that patient’s best interests be determined by balancing the burdens generated by a medical intervention against its benefits).

As the Greenspan court noted, although a public guardian must act in the best interests of a ward, such standard cannot prevent him from seeking termination of artificial feeding systems in accordance with his ward’s clearly expressed desires. In other words, the substituted judgment test is to be applied in the case of once-competent adult patients whose desire can be determined; it honors the patient’s right to choose, not someone else’s decision that it would be in the best interests of the patient to continue to receive life-sustaining treatments. The patient’s right to control his treatment prevails over contrary opinions of surrogates and caregivers.

The substituted judgment test, however, is of limited relevance in the case of immature minors. If anyone’s judgment is being substituted it is that of the parents or some other person with a close interest in the child’s welfare. (See In re L.H.R. (Ga. App. 1984), 253 Ga. 439, 321 N.E.2d 716 (recognizing that substituted judgment test is inapplicable to cases involving infants); cf. In re Guardianship of Barry (Fla. App. 1984), 445 So. 2d 365 (using substituted judgment of parents and doctors and requiring clear and convincing evidence of terminally ill infant’s medical condition before authorizing removal of life-support system).) The Health Care Surrogate Act expressly recognizes that the best interests standard, rather than substituted judgment, applies in the case of incompetents, including minors, whose consent or desire cannot be discerned. See Ill. Rev. Stat. 1991, ch. 1101/2, par. 851-20(b)(1).

Without a doubt, if C.A.’s parents were themselves competent adults whose baby was not a ward of the court, and they agreed with or consented to the doctors’ recommendation of a DNR order, that decision would have remained in the private domain and the court would not have become involved. As primary caregivers, parents or other close family members ordinarily are the ones charged with making the difficult determination of what is in a terminally ill child’s best interests. The legislature recognized this in providing statutory authorization for private decision making under the Health Care Surrogate Act. See Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 5(a) (“Uncertainty and lack of clarity in the law concerning the making of private decisions to forgo life-sustaining treatment, without judicial involvement, causes unnecessary emotional distress to the individuals involved and unduly impedes upon the individual right to forgo life-sustaining treatment”).

We conclude that the court properly used the best interests of the child standard in ruling that the guardian had authority to consent to the entry of the DNR at such time as the treating doctors agreed it was medically appropriate. The GAL’s reliance on Longeway and Greenspan to strike down the court’s order in this case avoids the specific factual context before us and the precise issues posed. The supreme court in both cases confirmed that incompetent patients have a common law right to refuse life-sustaining treatment through a surrogate. In both cases, the surrogates were close family members acting as guardians and attempting to effectuate the will of the patient, as expressed by his or her prior statements. Both involved removal of existing and continuous treatments that kept the comatose patients artificially alive. In the pending case, however, the surrogate is a court-appointed guardian of a minor ward who cannot express a judgment on the issue of her resuscitation. C.A.’s guardian does not seek the discontinuance of nutrition or medication, but instead requests permission to act in accordance with the parents’ and doctors’ decision that, given C.A.’s terminal and incurable condition, not to mention discomfort, no measures to restart her heart or breathing should be undertaken if her cardiac and respiratory systems fail on their own. Like the elderly patients in Greenspan and Longeway, however, C.A. has no true awareness of her condition, and her age and impaired neurological development mean she will remain unable to appreciate her situation. We conclude that the best interests of the child standard, rather than substituted judgment, is the proper way to evaluate C.A.’s condition.

THE EVIDENCE OF C.A.’S MEDICAL CONDITION

The medical evidence in this case was not disputed. The baby suffered from severe and incurable conditions, including the HIV infection and major neurological impairment. She needed intravenous feedings and had undergone two surgeries to her bowels. Other medical interventions to prolong her life included a tracheostomy, or tube in her throat, and a catheter in her heart. C.A.’s pain may not be quantifiable, but Dr. Gath testified that she was suffering, vomiting up her food, and crying a lot. The GAL does not dispute these facts, and while he makes an argument denying the “imminence” of C.A.’s death and the “terminal” nature of her condition, ultimately the GAL’s position rests on the contention that no level of evidence can sustain the entry of a DNR order on an infant’s medical charts because it is impossible to ascertain the infant’s wishes. Under the substituted judgment tests of Greenspan and Longeway, therefore, the GAL argues that the trial court’s order in this case must be found to be unsupportable by any evidence.

We reject this reasoning. If the argument is correct, the juvenile court judge in this case would have had to abandon C.A., in a sense, and simply dismiss the petition. That would leave C.A. in a worse position than a baby whose parents decide, with the doctors, that a particular course of treatment is better than another.

Whenever a court having jurisdiction over a justiciable controversy is faced with a novel legal issue or case of first impression, that court must exercise its judgment in accordance with traditional jurisprudence. Here, the court conducted an evidentiary hearing at which several witnesses testified. The GAL was given a full and fair opportunity to present all matters he deemed were significant on the issues. We do not agree with his assumption that unless the facts of the pending case fit exactly within Greenspan or Longeway, we must vacate the trial court’s order. Here, the treating physician gave her opinion that it was in the best interests of C.A. to have the DNR order available; a second physician agreed that it was “prudent”; the infant’s parents expressed their wishes in writing to the same effect; and the social worker on the case corroborated the parents’ decision that the child should not suffer and that given her prognosis it was in her interests not to be revived. We believe that the medical evidence and opinion as to her prognosis can fairly be viewed as clear and convincing.

The GAL did not, in fact, offer contrary evidence. Instead, the GAL challenges the legal conclusion that C.A.’s condition was terminal, her death imminent.

As to the terminal nature of her illness, both Doctors Simmons and Gath agreed that the child was in fact under a death sentence because of her HIV infection and profoundly compromised immune system. The GAL nevertheless argues that the evidence on this point was inadequate because the witnesses based their diagnosis on statistical analysis of other cases involving HIV-positive children, 80% of whom died by their third or fourth birthday. The GAL also uses the fact that such children may live beyond their fourth birthday as support for his contention that C.A.’s death is not imminent at this time.

We wish to avoid overly technical constructions of “terminal” and “imminent” because those terms must be considered in particular factual contexts. At the time the DNR order was initially sought in the pending case, C.A. was critically ill. Her condition at that time could well have been viewed as one in which death was imminent and resuscitative procedures would serve only to prolong the dying process. More to the point, the guardian was not seeking the immediate entry of a DNR order on C.A.’s charts at the time of the court’s ruling. Rather, he sought a finding that he was the proper surrogate to consult with the treating physicians at such time as they believed the DNR order was necessary and proper.

During oral argument before this court the guardian stated that DNR orders are constantly reviewed by medical personnel and are not necessarily permanent. Therefore, to grant the guardian authority to consent to a DNR order in the future, the trial court was not required to hold that C.A.’s death was imminent at the time the court ruled on the petition. The evidence did establish, however, that an infant who is HIV-infected from birth is expected to die from the complications of AIDS within a few years. Certainly, such a condition may be viewed as incurable and fatal, and, in the ordinary sense, terminal. The evidence at the hearing, in our opinion, established the gravity of C.A.’s condition and her nonexistent prognosis for even a semblance of normal childhood. Confined to bed, her painfully foreshortened life is attended by tubes, machines, catheters, and specialized care facilities— not playmates, toys, or trips to the zoo.

The witnesses who testified at trial all agreed that the DNR order was the proper course at such time as the child’s condition destabilized in the future and the medical decision would be made that resuscitative measures would not be beneficial. At that time, presumably her death would be considered “imminent” under the Greenspan definition, “judged as if the death-delaying procedures were absent.” (Greenspan, 137 Ill. 2d at 21.) Dr. Gath was the only witness expressing some ambivalence, in answering questions regarding the terminal nature of the disease, saying “we all have terminal illnesses known as life, itself.” She agreed, however, that the child was suffering, had serious and ongoing disabilities, and that in the future, when C.A. needs a resuscitation, a DNR would be “prudent.”

Finally, then, we conclude that the trial court did not err in granting to C.A.’s guardian the authority to consent to the entry of a DNR order in her medical charts in accordance with the treating doctor’s recommendations, which, in turn, were based on her medical condition and prognosis. We read the court’s order as affirming the guardian’s authority to act as C.A.’s surrogate, to implement a decision that C.A.’s guardian, her doctors, and her parents concurred in as being in the child’s best interests. In our view, the medical evidence presented was sufficient to enable the court to determine that a DNR order should be available for this patient. The court neither abdicated its responsibilities nor exceeded its authority.

We stress that we are not attempting to resolve, for all cases, when and in what circumstances a guardian appointed under the Juvenile Court Act may seek (or not seek) judicial intervention before consenting to placement of a DNR order on a ward’s medical charts. Some of the evidence in this case indicates that C.A.’s prematurity was the likely reason she stopped breathing at birth and on the subsequent occasion. We certainly do not imply that premature infants should not be resuscitated or otherwise treated, simply because of their prematurity. We live in an age when medical technology can save premature babies who, a decade or two earlier, would almost certainly have died at birth. C.A., tragically, suffers from a devastating, deadly condition that current medical technology cannot cure. We are limiting our opinion to its facts, with the caveat that in cases like this one — where the patient’s wishes are not available and the court is involved — someone has to decide. Although it may be argued that when the patient’s desires cannot be determined, life-sustaining medical treatments should be instituted or maintained, we are of the belief that such an outcome is as much a decision, by default, as any other. See LSMT guidelines, at 66.

Ill

We have alluded throughout this opinion to the Health Care Surrogate Act (Act), which became effective on September 26, 1991, days after the entry of the order in this case. The GAL requests us to not only find that it applies to this case and was not fulfilled, but also to declare the Act unconstitutional for lacking due process and equal protection safeguards. We decline to reach constitutional issues that are not necessary to our ruling nor squarely before us, however. Therefore, our brief discussion of the new Act is limited to acknowledging that the legislature has stepped into this area and enacted a statutory framework to guide interested parties in the future. See Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 5(a) (“The legislature recognizes that all persons have a fundamental right to make decisions relating to their own medical treatment •**** [and lack] of decisional capacity, alone, should not prevent decisions to forgo life-sustaining treatment from being made on behalf of persons who lack decisional capacity

The Health Care Surrogate Act allows an individual chosen from among a statutory order of persons (including the patient’s guardian, family members, or close friends) to decide, subject to certain conditions, whether to initiate or continue life-sustaining medical treatments when the patient cannot speak for himself. The Act adopts the substituted judgment test to be used when the patient had expressed views on the subject before becoming incompetent. When the patient’s views are not ascertainable, however, the Act provides for application of the best interests of the patient standard. Ill. Rev. Stat. 1991, ch. 1101/2, par. 851-20 (b)(1).

The Act sets forth three qualifying conditions, which trigger the surrogate’s authority to act when one or more of the conditions is certified to exist by the attending physician and at least one other qualified physician. The first condition defines “terminal condition” as meaning “an illness or injury for which there is no reasonable prospect of cure or recovery, death is imminent, and the application of life-sustaining treatment would only prolong the dying process.” (Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 10.) This is similar to the Greenspan definition.

The second alternate condition is the “permanent unconsciousness” element found in the coma or persistent vegetative state, meaning in essence that the patient is unaware of “self and environment,” incapable of “purposeful action [or] social interaction” and the initiation or continuation of life-sustaining treatment in light of the medical condition provides “only minor medical benefit.” Ill. Rev. Stat. 1991, ch. 1101/2, par. 851-10.

The third alternative qualifying condition is an “incurable or irreversible condition” for which there is not a “reasonable prospect of cure or recovery.” It is a condition “that ultimately will cause the patient’s death” even with the life-sustaining treatment; “imposes severe pain or otherwise imposes an inhumane burden on the patient”; and is a condition for which the continuation of life-sustaining treatment in light of the patient’s medical condition provides only minimum medical benefits. Ill. Rev. Stat. 1991, ch. 1101/2, par. 851 — 10.

The GAL challenges the new Act on the grounds that it does not provide for automatic judicial review of all matters affecting life-sustaining medical treatments. At the same time, he argues that the trial court did not follow the requirements of the new Act, which was not then in effect. The juvenile court did conduct an evidentiary hearing to determine what would be in the best interests of the child, however, which presumably would not have been required had the parties proceeded under the Surrogate Health Care Act. We find the GAL’s position unworkable, as it apparently argues for greater restrictions on a surrogate’s ability to consent to the termination of life-sustaining treatments than either the courts or the legislature has found appropriate.

As noted, we will not address the constitutionality of the new Act. Nor do we express an opinion as to how the Act may operate in conjunction with the Juvenile Court Act when the rights of minor wards are affected. We do not think the result in this case is inconsistent, however, with one that could have been reached under the new Act.

As a note of caution, we remind parties and lawyers involved in surrogate health care decisions that time is often a major factor. In the pending case, our opinion affirms the guardian’s right to consent to the DNR in the future, in consultation with the attending physicians, without the further involvement of the court. Unfortunately, the proceedings below and the appeals process have already added months of uncertainty to an unfortunate situation. In some cases, because of the emergency nature of these types of decisions, courts may not be able to act fast enough. That is surely one of the concerns the legislature considered in providing for such decisions to be made without judicial intervention whenever possible. When the court is involved, however, it can act only within its traditional role. From the common law right of a patient’s informed consent to statutory rights to create living wills and appoint health care agents, the law has evolved to accommodate conflicting views over how life-and-death medical decisions should be made. The new Act fills a statutory gap involving the incompetent patient’s right to have a surrogate act on his behalf.

Here, the GAL’s arguments were sincere and zealous as he spoke out for the highest standards and levels of proof. We agree that when an adult patient’s desires can be determined, by clear and convincing evidence, that determination prevails. We find invalid, however, the GAL’s underlying assumption that C.A.’s guardian, doctors, and parents lacked the right to decide on C.A.’s behalf whether resuscitative measures should be continued, given her medical condition and prognosis. The courts are not paralyzed when the ultimate decision is who should make such a decision. Here, the court considered the evidence and law and determined that the guardian should, in essence, be given the same right as a parent to concur with the doctors’ medical judgment that a DNR order might become necessary and proper given C.A.’s condition.

For the foregoing reasons, we affirm the ruling of the trial court.

Affirmed.

JIGANTI, P.J., concurs.

We recognize that in future cases decided under the Health Care Surrogate Act (Act), the precise issue we decide here involving the juvenile court’s authority to approve DNR orders may be moot. The new Act permits a surrogate to consent to such orders on behalf of incompetent minors. Although the new Act contemplates private decision making under the statutory guidelines therein, our opinion in this case affirms the juvenile court’s general authority, upon the guardian or other interested party’s request, to hear and resolve those issues concerning the ward’s welfare. The new Act preserves existing rights under other laws, moreover, including any right to seek judicial review “under the common law or statutes of this State to the extent not inconsistent with the provisions of this Act.” Ill. Rev. Stat. 1991, ch. 1101/2, par. 851-55.

A living will allows a person to execute a document that expresses his desire not to be kept alive through artifical or extraordinary means if in the future he suffers a terminal condition. Another option is the appointment of a health care agent, who is vested with the right to make decisions on behalf of the patient when the patient is incapacitated.