On certification to the Superior Court, Chancery Division, Morris County, whose opinion is reported at 210 N.J. Super. 543 (1986).
For modification and affirmance -- Chief Justice Wilentz, and Justices Clifford, Handler, Pollock, Garibaldi and Stein. For reversal -- Justice O'Hern. The opinion of the Court was delivered by Garibaldi, J. Handler, J., concurring. Pollock, J., concurring. O'Hern, J., dissenting. Clifford, Handler and Pollock, JJ., concurring in result.
Today, in In re Peter, 108 N.J. 365 (1987), we set forth the guidelines and procedures under which life-sustaining medical treatment could be withdrawn from an elderly nursing home patient in a persistent vegetative state who, prior to her incompetency, had clearly expressed her desire not to be sustained in that condition. This appeal requires us to develop the guidelines and procedures under which life-sustaining medical treatment may be withdrawn from a non-elderly nursing home patient in a persistent vegetative state who, prior to her incompetency, failed to express adequately her attitude toward such treatment. Specifically, we must determine who decides for the incompetent patient, the standard that the surrogate decisionmaker must use, and who must be consulted and concur in the decision.
Embarking on this task, we are mindful that the patient's right to self-determination is the guiding principle in determining whether to continue or withdraw life-sustaining medical treatment; that therefore the goal of a surrogate decision-maker for an incompetent patient must be to determine and effectuate what that patient, if competent, would want; and that the court does not decide whether to withdraw life-supporting treatment. Rather, our role is to establish for those who make that decision criteria that respect the right to self-determination and yet protect incompetent patients.
Since July 1980, Nancy Jobes has been a resident patient at the Lincoln Park Nursing Home (hereinafter nursing home). In May 1985 her husband John and her parents requested that the nursing home withdraw the jejunostomy tube (hereinafter j-tube), which provides her with nutrition and hydration. The nursing home refused on moral grounds.
Thereafter Mr. Jobes asked the Chancery Division to "authorize and order" the withdrawal of the j-tube.*fn1 He contended that his wife was in a persistent vegetative state, and that therefore he and her family had concluded that she would choose to terminate artificial feeding and that it was in her best interests to do so.
The trial court appointed Richard Kahn, Esq., as guardian ad litem for Mrs. Jobes. After reviewing the medical evidence and interviewing her family, close friends and clergyman, Mr. Kahn filed a report in favor of Mr. Jobes' decision. The nursing home then moved for the appointment of a "life advocate." The trial court denied that motion. In re Jobes, 210 N.J. Super. 543 (Ch. Div. 1986). The nursing home unsuccessfully appealed that decision.
The Public Advocate intervened, with the consent of Mr. Jobes and Mr. Kahn, as a party in opposition to them.
Prior to trial, the judge visited Mrs. Jobes at the nursing home and filed an observation report. After a seven-day trial, the court found that Mr. Jobes had proved by clear and convincing evidence that his wife is in a persistent vegetative state with no prospect of improvement, and that, if competent, she would not want to be sustained by the j-tube under her present circumstances. The court therefore authorized Mr. Jobes to implement removal of the j-tube under the supervision of a licensed physician. However, the court held that the nursing
home was entitled to refuse to participate in the withdrawal of the j-tube and could keep Mrs. Jobes connected to it until she was transferred out of that facility. Judgment was entered on April 28, 1986, but relief was stayed pending final determination of this appeal. Both Mr. Jobes and the nursing home petitioned this court for direct certification, which we granted. 105 N.J. 532 (1986).*fn2
Nancy Ellen Jobes is thirty-one years old. She is the daughter of Robert and Eleanor Laird, both of whom are living. She has three living siblings. She married John H. Jobes, III, on July 31, 1976. Prior to March of 1980, Mrs. Jobes had no significant mental or physical handicap. She was employed as a certified laboratory technologist, and was four and one-half months pregnant with her first child.
On March 11, 1980, Mrs. Jobes was admitted to Riverside Hospital for treatment of injuries sustained in an automobile accident. Doctors soon determined that her fetus had been killed. During the course of an operation to remove the dead fetus, she sustained a severe loss of oxygen and blood flow to her brain. She suffered massive and irreversible damage to the part of her brain that controls thought and movement.*fn3 She has never regained consciousness.
On July 28, 1980, Mrs. Jobes was transferred to the nursing home.*fn4 Her condition has not changed since she was admitted. She is unable to speak or make any kind of noise. A towel is kept under her chin to catch the secretions that drip from her mouth. She has a tracheostomy, which is covered with a plastic shield to which a flexible tube is attached. An air compressor must humidify the air moving into her throat through this tube to prevent it from becoming clogged with mucous.
She is incontinent and requires a catheter to continuously irrigate her bladder. She receives routine enemas for bowel evacuation. She has chronic urinary tract infections. She is given antibiotics when necessary, as well as medication intended to prevent seizures.
Her muscles have atrophied and her limbs are rigidly contracted. Her extremities cannot be moved. Her closely clenched fingers are padded to prevent the skin between them from deteriorating.
She cannot swallow. Originally she was fed and hydrated intravenously, then through a nasogastric tube, then a gastrotomy tube. In June 1985, complications with the gastrotomy tube necessitated an even more direct approach. Since then, Mrs. Jobes has been fed through a j-tube inserted -- through a hole cut into her abdominal cavity -- into the jejunum of her small intestine. Water and a synthetic, pre-digested formula of various amino acids are pumped through the j-tube continuously. She has been removed to Morristown Memorial Hospital at least three times because of complications with the j-tube.
After Mr. Jobes instituted this suit, Mrs. Jobes was admitted to Cornell Medical Center-New York Hospital (Cornell) for four days of observation and testing. All of the resulting medical evidence supports Mr. Jobes' characterization of her condition.
Dr. Fred Plum, Professor and Chairman of the Department of Neurology at Cornell, examined Mrs. Jobes every day while she was there. As a witness for Mr. Jobes, he testified that she is in a persistent, i.e., irreversible, vegetative state. Dr. Plum is a world renowned expert on the "persistent vegetative state." He originally created that term, and is the author of several treatises and numerous articles explaining it. At trial he explained:
Vegetative state describes a body which is functioning entirely in terms of its internal controls. It maintains temperature. It maintains heart beat and pulmonary ventilation. It maintains digestive activity. It maintains reflex activity of muscles and nerves for low level conditioned responses. But there is no behavioral evidence of either self-awareness or awareness of the surroundings in a learned manner.
See also Quinlan, supra, 70 N.J. at 24-25 (Dr. Plum's similar explanation of the vegetative state); President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment 174-75 (1983) (hereinafter President's Commission Report) ("Personality, memory, purposive action, social interaction, sentience, thought, and even emotional states are gone. Only vegetative functions and reflexes persist. If food is supplied, the digestive system functions, and uncontrolled evacuation occurs; the kidneys produce urine; the heart, lungs, and blood vessels continue to move air and blood; and nutrients are distributed in the body.") (footnote omitted).
Dr. David E. Levy, an associate professor of neurology at Cornell and an associate of Dr. Plum, was retained as an expert by both the Public Advocate and the guardian ad litem, but testified only for the guardian ad litem. Dr. Levy is the author of numerous publications on brain damage resulting from a reduction in bloodflow and oxygen, and the persistent vegetative state. He has studied over six hundred comatose patients.
Dr. Levy observed and tested Mrs. Jobes far more extensively than any of the other neurological experts. He observed her first at the nursing home and then every day that she was at
Cornell. He spent several hours with her during each of the days that a positron-emission tomograph scan and a nuclear magnetic resonance scan were conducted. On the basis of his clinical observations, Dr. Levy concluded that Mrs. Jobes is in a persistent vegetative state without any chance of recovery.
All the laboratory tests performed on Mrs. Jobes at Cornell were consistent with that diagnosis. A CAT scan and the nuclear magnetic resonance scan both indicated atrophy of the cerebral brain tissue.*fn5 The position emission tomograph scan indicated that blood flow and metabolism in Mrs. Jobes' cerebral cortex are only thirty to forty percent of that of a normal cognitive brain. This level of brain activity is found in persons under very deep anesthesia and those who have suffered a massive loss in brain function.
Several other doctors examined Mrs. Jobes at the Nursing Home, and testified about their observations. Dr. Henry Liss, a neurosurgeon and Professor of Neurological Surgery at the College of Physicians and Surgeons of Columbia University, and an associate professor of surgery at Rutgers Medical School, and Dr. Daniel Carlin, a neurologist and an associate professor of neurology at Rutgers Medical School, testified for Mr. Jobes. Each reviewed Mrs. Jobes' medical reports, and examined her in June and again in the Autumn of 1985. Each of them concluded that she is in a persistent vegetative state with no chance of recovery.
Dr. Allan H. Ropper, an associate professor of medicine at Harvard Medical School and Director of the Neurosurgery-Neurology Intensive Care Unit at Massachusetts General Hospital, and Dr. Maurice Victor, Professor of Neurosurgery at Case Western Reserve University School of Medicine, testified for the nursing home. Neither performed any laboratory tests.
Dr. Victor examined Mrs. Jobes once at the nursing home for about one and one-half hours. He testified that although Mrs. Jobes had suffered severe and irreversible cerebral damage, he did not believe that she is in a vegetative state. Dr. Victor had no written record of Mrs. Jobes' responses during his examination of her. He based his opinion on his recollection of her reactions to stimuli. He recalled that on four or five occasions he had said, "Nancy, pick up your head" and that, with only one exception, after one or two seconds, she obeyed. He testified that she had responded to commands to wiggle her toes on eight out of twelve occasions; to move her leg once; to stick out her tongue in response to four or five requests. These responses indicated to Dr. Victor that Mrs. Jobes could hear and understand him and that her brain could connect the cerebral cortex, where hearing and understanding take place, to the muscles that she moved.
Dr. Victor testified that he interpreted Mrs. Jobes' reaction to ammonia under her nose -- a "violent grimace" and a retraction of her head -- as not purely reflexive. He admitted that this was a "pure interpretation" and that he was less sure about this than he was about her responses to commands.
Dr. Victor testified that he had observed emotions in Mrs. Jobes' facial gestures. He characterized them as "anticipatory" when he entered her room; "intent" when she received commands; "satisfied" when she was congratulated on having responded.
Dr. Ropper, like Dr. Victor, examined Mrs. Jobes at the nursing home for approximately ninety minutes. He observed that she had a wide range of random or spontaneous movements:
Approximately every thirty seconds to a minute she would lift her right shoulder up off the recliner. She would lift her head from the left armrest off the armrest to sort of a neutral position and move it to the right, taking about three to four seconds to do that, and that she did spontaneously every three to five minutes.
She would move her foot downward and her toes slowly about every ten to forty seconds. She would lift her leg, right leg stiffly off the chair about a half inch to an inch every five to ten minutes.
Generally vegetative patients . . . have a very narrow range of stereotyped movements that are repeated. [I]n general, moving a limb away from the body is not one of them. Certainly lifting an arm off a recliner or a bed wouldn't be one of them. So higher level movements of that sort or more complicated movements, lifting the head up, moving it to one side and then putting it back, to me, are against the vegetative state.
Like Dr. Victor, Dr. Ropper testified that he had elicited command-responses from Mrs. Jobes.
As a result of his observations, Dr. Ropper concluded that Mrs. Jobes fell "slightly outside of [his] operational definition of the persistent vegetative state." Dr. Ropper defines that state as one in which the patient "is in or has sleep/wake cycles, is totally incapable of responding and is totally unaware of environment or self." His definition is subtly but significantly different from that which was offered by Dr. Plum, and accepted by this court in Quinlan, supra, 70 N.J. at 25. Primitive reflex responses to external stimuli would exclude a patient from the persistent vegetative state under Dr. Ropper's definition but not under Dr. Plum's.
All of the medical experts retained by the plaintiff, the guardian, and the Public Advocate were unsuccessful in eliciting volitional responses from Mrs. Jobes. They observed the kind of movements reported by Drs. Victor and Ropper, but concluded that they were startle reflexes and random movements rather than evidence of any cognitive awareness.
Some of the nurses and nurses' aides who work at the nursing home testified that they had observed examples of what they interpreted as cognitive awareness on the part of Mrs. Jobes. They claimed that she moved her head to aid them in washing her hair; smiled at appropriate times; followed people with her eyes; and relaxed when spoken to or touched in a soothing manner.
In addition, several nurses and aides testified that they saw tears in Mrs. Jobes' eyes when her family visited. Nurses pointed out the phenomenon they described as "tears" to Dr. Carlin when he examined her at the nursing home. He characterized it as an unemotional collection of secretions in the corner of Mrs. Jobes' eyes. Dr. Liss also observed these secretions. He explained that they are merely accumulations of liquid that keep the conjunctiva moist and that they are created by rapid, reflexive eye-blinking, rather than emotions.
Other nurses and nurses' aides testified that they had not observed any cognitive awareness in Mrs. Jobes, and that she gave no response to their verbal commands.
In the two other cases that we have decided today, In re Farrell, 108 N.J. 335 (1987), and In re Peter, 108 N.J. 365 (1987), as well as Quinlan and Conroy, there was no disagreement among the medical experts about the patient's medical condition or prognosis. Moreover, we have not found a dispute among medical experts over a patient's condition in any other case concerning the withdrawal of life-sustaining treatment. In this case all the medical experts agree that Mrs. Jobes is severely brain damaged. But while the experts for Mr. Jobes, the guardian ad litem, and the Public Advocate contend that she is in a persistent vegetative state, the two nursing home experts contend that she falls slightly outside of their definition of the persistent vegetative state.
In Conroy, we required that all medical determinations made in the course of a decision to withhold treatment from an incompetent patient be based upon clear and convincing medical evidence. See 98 N.J. at 368, 381-82. Evidence is "clear and convincing" when it
produce[s] in the mind of the trier of fact a firm belief or conviction as to the truth of the allegations sought to be established, evidence so clear, direct and weighty and convincing as to enable [the factfinder] to come to a clear conviction, without hesitancy, of the truth of the precise facts in issue.
[ State v. Hodge, 95 N.J. 369, 376 (1984) (citations omitted).]
Evidence may be uncontroverted, and yet not be "clear and convincing." See In re Colyer, 99 Wash. 2d 114, 143-45, 660 P. 2d 738, 754-55 (Wash.1983) (Dore, J., dissenting) (criticizing the Washington Supreme Court's willingness to accept the uncontroverted prognosis that a patient who had been comatose for only twenty-five days was in a persistent vegetative state in light of the fact that "some physicians have testified in reported cases that a four-to six-month comatose period is used to determine whether there is any improvement in the incompetent, to reach their opinion in testifying as to whether the incompetent would recover to a cognitive or sapient existence"), cited with approval in Conroy, supra, 98 N.J. at 365.*fn6 Conversely, evidence may be "clear and convincing" despite the fact that it has been contradicted. In this case, the reports and testimony of the Nursing Home's experts are inconsistent with the trial court's conclusion that Mrs. Jobes is in a persistent vegetative state. Nevertheless, we believe that conclusion was supported by clear and convincing evidence.
Doctors Plum and Levy, each of whom concluded that Mrs. Jobes is in a persistent vegetative state, have devoted their medical careers to the diagnosis, treatment, and prognosis of patients in the persistent vegetative state. Doctors Victor and Ropper, who testified that Mrs. Jobes has some cognitive ability, are unquestionably accomplished neurologists, but their experience and training in this particular area is comparatively limited. Moreover, Doctors Victor and Ropper each based his opinion of Mrs. Jobes' condition on a single, ninety-minute observation. In contrast, Doctors Plum, Levy, Carlin and Liss -- all of whom agree that Mrs. Jobes is in a persistent vegetative state -- each spent more time with her. Doctors Plum and Levy in particular based their opinions on extensive clinical and laboratory examinations and observations.
We take special note of the testimony of Dr. Levy because, in addition to his having spent the most amount of time with Mrs. Jobes, he was retained by the two most disinterested participants in this case, the Public Advocate and the Guardian ad litem. We cannot ignore the possibility that experts retained in order to litigate an extremely emotional issue like the withdrawal of a life-sustaining feeding tube might be partisan.
Accordingly, we conclude that the neurological experts who testified for Mr. Jobes, the guardian ad litem and the Public Advocate offered sufficiently clear and convincing evidence to support the trial court's finding that Mrs. Jobes is in an irreversible vegetative state. The trial court heard the testimony, observed the witnesses, and even visited Mrs. Jobes at the nursing home. It was uniquely equipped to decide which experts were more credible. We have always given great deference to trial court evaluations of conflicting medical evidence. See generally Baxter v. Fairmont Food Co., 74 N.J. 588, 597-98 (1977) (Hughes, C.J.) (explaining the "very considerable respect" accorded to trial court evaluations of medical evidence). While we recognize the gravity of the responsibility to evaluate medical evidence in withdrawal-of-treatment cases, we believe that our traditional confidence in the factual determinations made by our trial courts is as appropriate in this as in other contexts.
Mrs. Jobes' closest friends, her cousin, her clergyman, and her husband offered testimony that was intended to prove that if she were competent, Mrs. Jobes would refuse to be sustained by the j-tube. Deborah Holdsworth, a registered nurse and life-long friend of Mrs. Jobes, recalled a conversation in 1971 in which Mrs. Jobes stated that if she were ever crippled like the children with multiple sclerosis and muscular dystrophy that Ms. Holdsworth cared for, she would not want to live. Ms. Holdsworth also recalled telling Mrs. Jobes on numerous occasions
that she, Holdsworth, would not want to live like Karen Quinlan did after the removal of her respirator. She recalled that Mrs. Jobes had not disagreed with her, but could not recall Mrs. Jobes' position any more clearly than that. Finally Holdsworth recalled that in late 1979 Mrs. Jobes specifically stated that she would not want to be kept alive on a respirator like a patient suffering from amyotrophic lateral sclerosis whom Ms. Holdsworth had described to her.
Another friend of Mrs. Jobes' since childhood, Donna DeChristofaro, testified that in Autumn 1979 Mrs. Jobes had told her that "it was a shame that [Karen Quinlan] hadn't died when they removed the respirator; that that wasn't living, it was existing; that she had wished that God had taken her then. . . ."
Mrs. Jobes' first cousin, Dr. Cleve Laird, recalled a discussion he had with her in the summer of 1975 about a victim of an automobile accident who was being kept alive by a cardiac stimulator:
She said that she wouldn't want those measures taken in her case and that she certainly wouldn't want to live that way.
I said, well, they wouldn't do that to me because I carried and still carry a form of identification that says that I do not wish to have any heroic measures taken in case of massive injury.
Subsequent to that she became interested in where I had gotten that and I told her that it was pretty common both at Baylor where I had taught prior to going up to Massachusetts and also at Harvard. I said that I would send her a card. My wife was there and I turned around to her and told her why didn't she send one. Then we moved on into discussion of other technical things.
Dr. Laird testified that his wife had sent the card to Mrs. Jobes, and that Mrs. Jobes thanked them for it in a note she sent them at Christmas. The card has not been found.
John Jobes testified that if his wife were competent, she would "definitely" choose to terminate the artificial feeding that sustains her in her present condition. He generally recalled her having stated that she would not want to be kept alive under Karen Quinlan's circumstances. She did this frequently
when the Quinlan case was in the news, mostly during 1976-77.*fn7
The Reverend George A. Vorsheim, minister of the Morris Plains Presbyterian Church, testified that he had married the Jobes, and that he was familiar with them and with Mrs. Jobes' parents. They are all members of the Presbyterian Church (U.S.A.). The Reverend Mr. Vorsheim testified that Mrs. Jobes was raised in the Presbyterian Faith, and that in the Presbyterian Faith there is no religious requirement to perpetuate life by artificial means nor is there any doctrine prohibiting life-sustaining medical treatment. The Presbyterian Church leaves decisions like the one at issue here to the individual conscience. See generally Advisory Council of the Presbyterian Church (U.S.A.) on Church and Society, An Essay on the Problems Related to the Prolongation of Life by Technological Methods (1974) (adopted by the 186th General Assembly of the United Presbyterian Church (U.S.A.)); Advisory Council of the Presbyterian Church (U.S.A.) on Church and Society, The Covenant of Life and the Caring Community and Covenant (1983) (adopted by the 195th General Assembly of the United Presbyterian Church (U.S.A.)).
In Conroy and Peter we have described the type of evidence that can establish a person's medical preferences
under the "subjective test." See Peter, supra, 108 N.J. at 377-379; Conroy, supra, 98 N.J. at 361-63. We have explained that the probative value of prior statements offered to prove a patient's inclination for or against medical treatment depends on their specificity, see Conroy, supra, 98 N.J. at 363, their "remoteness, consistency and thoughtfulness . . . [,] and the maturity of the person at the time of the statements. . . ." Id. at 362. All of the statements about life-support that were attributed to Mrs. Jobes were remote, general, spontaneous, and made in casual circumstances. Indeed, they closely track the examples of evidence that we have explicitly characterized as unreliable. See id. at 362-63 (negating probative value of "an off-hand remark about not wanting to live under certain circumstances made by a person when young and in the peak of health"); id. at 366 (noting that "informally expressed reactions to other people's medical condition and treatment" do not constitute clear proof of a patient's intent).
Other than her prior statements, the only evidence of Mrs. Jobes' intent that the trial court relied on was her membership in the Presbyterian Church. There is no specific evidence of her personal belief in the tenets of that Church; nevertheless, we have consistently recognized that "a person's religious affiliation and the tenets of that religion may furnish evidence of his or her intent with regard to medical decisions." Conroy, supra, 98 N.J. at 362; see Quinlan, supra, 70 N.J. at 30-31. In this case, however, Mrs. Jobes' minister testified that her religion neither requires nor forbids medical treatment like that at issue here. Therefore, Mrs. Jobes' religious affiliation does not offer much guidance in determining what her preference would be in this situation.
Thus, we conclude that although there is some "trustworthy" evidence that Mrs. Jobes, if competent, would want the j-tube withdrawn,*fn8 it is not ...