On appeal by the state, we review a trial court order authorizing removal of a life support system from Andrew James Barry, the infant son of Mark and Laura Barry. We affirm.
These proceedings were initiated by Mr. and Mrs. Barry, the child's natural parents. After their appointment as legal guardians of Andrew, they petitioned for approval to terminate the use of his life support system. They alleged that their child was in a chronic permanent vegetative coma, absent cognitive brain function, and terminally ill. Further, they alleged that Andrew had no independent respiratory function and, should the ventilator sustaining his life be removed, he would expire in a matter of hours. Their petition was accompanied by supporting affidavits of three physicians who had examined and attended the infant and who concurred in their decision.
A guardian ad litem, appointed by the court, filed a report concurring in the conclusion
Counsel for the petitioners, the state, and the Humana-Women's Hospital where the child is an inpatient, appeared at an evidentiary hearing along with the guardian ad litem and the parents. The court heard testimony from the parents and from the three physicians.
At the conclusion of the hearing, the trial court took the matter under advisement. Three days later, on October 21, 1983, the court announced the following findings:
On that same date the court entered an order authorizing the parents to cause the ventilator life support system to be terminated and to instruct the attending physicians not to furnish life-sustaining procedures thereafter, except for the sole purpose of alleviating the child's pain and suffering and to keep him comfortable and provide him with normal nutrition. Finally, the court ordered that no person acting in accordance with its order would be held civilly or criminally responsible.
This appeal by the state ensued, with the trial judge's order stayed pending resolution by this court.
This appeal vividly demonstrates the tragedy of a comatose infant with a severe birth defect being kept alive only by extraordinary medical measures. While this type of problem is not new, it is one that is viewed today from a new perspective as dramatic advances in medical technology have made it possible to sustain life in many infants who would otherwise have died at birth. As a consequence, parents and medical personnel now face some very real moral and ethical judgments on the issue of life and death.
The law has begun to respond to this new technology. For example, in 1980 the legislature enacted section 382.085, Florida Statutes, to recognize "brain death" under certain circumstances.
While Florida has defined brain death, Andrew does not fully meet the necessary criteria because there is a minimal function of his brain stem. Section 382.085(4), however, recognizes that the statutory recognition of brain death "is not the exclusive standard for determining death or for the withdrawal of life-support systems." Moreover, while there is legal precedent to allow a competent individual to order removal of life support systems, there are no Florida statutes or controlling judicial precedents which address the removal of life support systems from a minor. Thus, after arriving at what they considered an informed and moral judgment, Mr. and Mrs. Barry petitioned the circuit court to sanction their decision.
The state contends here, as it did below, that its interest in preserving life outweighs the parents' assertion of their child's right of privacy to require removal of the life support system. The state also challenges the trial court's finding that Andrew is terminally ill and argues that the
While we agree that the state has a definite interest in preserving life, we must balance that right against the rights of an individual. For example, in January 1980 the Supreme Court of Florida held that a constitutional right of privacy affords a competent adult suffering from a terminal illness the right to refuse or order discontinued extraordinary medical treatments where all affected family members consent. While characterizing the issue as being more suitable to being addressed in the legislative forum, the court recognized that absent a response by the legislature, courts must proceed on a case-by-case basis to meet this type of problem. Satz v. Perlmutter, 379 So.2d 359 (Fla. 1980).
While the court's observation in Perlmutter did not evoke any specific legislative response, the electors of this state, on November 4, 1980, adopted Article I, section 23, of the Bill of Rights to the Florida Constitution. That section provides an express right of privacy for every natural person and makes no distinction as to whether a natural person is competent to exercise that right. However, we agree with the Fourth District Court of Appeal which recently observed that the constitutional right of privacy would be an empty right if one who is incompetent were not granted the right of a competent counterpart to exercise his rights.
The record refutes the state's contention that Andrew is not terminally ill and fully supports the trial judge's findings that the child is in a permanent vegetative coma without any cognitive brain function, that his condition is permanent and irreversible, and that his life is being sustained only through the use of extraordinary life prolonging measures.
Dr. Richard Inwood, a neonatologist, explained that Andrew was the second of twins. The first was stillborn, and Andrew, who arrived shortly thereafter, was asphyxiated with very little spontaneous activity. He developed seizures and problems of breathing soon after birth and was placed on a ventilator. Attempts to wean him from that have been unsuccessful. Dr. Inwood pointed to the CAT scan and sonograms which confirm his diagnosis of hypoxic eschemic encephalopathy of marked degree with overwhelming destruction of the child's brain tissue. In layman's terms, Dr. Inwood said there is basically a hole where a large part of the child's brain would normally be. Furthermore, he said the condition was incurable and irreversible, and he characterized the life support system as merely postponing the moment of the child's death. Dr. Kenneth Solomon, another neonatologist, and Dr. J. Richard Gunderman, a child neurologist, concurred in Dr. Inwood's diagnosis and prognosis. Dr. Gunderman added that, while Andrew was not dead by the definition of brain death per se, that medically speaking he has no life.
Each doctor was sensitive to the ethical and moral problems of discontinuing the respirator, but given the assurance that there would be no legal ramifications of a civil or criminal nature, each would abide by the decision of the parents which they regarded as correct. If the life support system were removed, it was their consensus that the child would die within an hour. If Andrew were to remain on the ventilator, they estimated he would continue to live anywhere from one to five years.
As noted, the state also argues that the court erred in basing its order on the doctrine of substituted judgment in the absence of evidence of Andrew's intent. The doctrine of "substituted judgment" was developed by the courts to afford incompetent patients the same rights as competent ones in determining whether medical treatment which merely prolongs the time of their death should be discontinued. Under this doctrine the court substitutes its
As the trial court noted in the present case, it is proper for the court to exercise its substituted judgment even absent evidence of intention of the incompetent person. However, in the case of a child who has not reached maturity, it is the parents and their medical advisors who generally must make these decisions. And, where judicial intervention becomes necessary or desirable, the court must be guided primarily by the judgment of the parents who are responsible for their child's well-being, provided, of course, that their judgment is supported by competent medical evidence.
Here, the parents testified that they had been adequately informed by their physicians as to their child's condition. Further, as members of the Catholic Church, they discussed the situation with several priests and determined their position was a moral one, and one supported by their church. This view was echoed by one of the physicians of their own faith who testified. They also noted their decision was not motivated by any financial strain because one hundred percent of all the medical expenses were being covered by their insurance.
Where, as here, the parents' informed decision is backed by uncontroverted medical evidence that their young child is terminally ill and that his condition is incurable and irreversible, their decision, we think, overrides any interest of the state in prolonging their child's life through extraordinary measures. We can conceive of no state interest great enough to compel the parents to continue to submit their child to a life support system in this instance. To do so would merely prolong the death of a child terminally ill, wholly lacking in cognitive brain functioning, completely unaware of his surroundings, and with no hope of development of any awareness. The means now being employed are measures which even the physicians testified they would not now initiate given their present knowledge of the situation. It is, we think, the right and obligation of the parents in such an instance to exercise their responsibility and prerogative, as did Mr. and Mrs. Barry, of making an informed determination as to whether these extraordinary measures should be continued. See In re Quinlan.
The record discloses that the proceedings below were thorough and handled with great care and concern. We conclude that there is clear and convincing evidence to support the trial judge's findings. Moreover, we affirm his conclusion that the interests of Andrew outweigh those of the state in this instance, and that his parents could validly assert a privacy interest on his behalf. We also agree that the trial court correctly applied the doctrine of substituted judgment. Therefore, we affirm the trial court in all respects.
Finally, while the issue is not squarely before us, the state has requested that we require judicial review before life support can be withheld from a non brain-dead child. We decline to so hold as we recognize that decisions of this character have traditionally been made within the privacy of the family relationship based on competent medical advice and consultation by the family with their religious advisors, if that be their persuasion.
As noted, the increased availability of advanced technology to artificially sustain
Although judicial intervention need not be solicited as a matter of course, still the courts must always be open to hear these matters on request of the family, guardian, affected medical personnel, or the state. In cases where doubt exists, or there is a lack of concurrence among the family, physicians, and the hospital, or if an affected party simply desires a judicial order, then the court must be available to consider the matter. Medical personnel and hospitals may well consider the suggestion made by Dr. Solomon in his testimony that an advisory committee should be available to assist families and physicians in these matters.
Finally, we urge the trial courts to handle these matters on an expedited basis with due concern for the delicacy of the issues and the feelings of the parties involved.
GRIMES, A.C.J., and LEHAN, J., concur.