On certification to the Office of the Ombudsman for the Institutionalized Elderly of the State of New Jersey.
For remandment -- Chief Justice Wilentz and Justices Clifford, Handler, Pollock, Garibaldi and Stein. Opposed -- Justice O'Hern. The opinion of the Court was delivered by Garibaldi, J. Handler, J., concurring. O'Hern, J., dissenting. Clifford, Handler and Pollock, JJ., concurring in the result.
This appeal requires us to set forth the guidelines under which a life-sustaining nasogastric tube may be withdrawn from a sixty-five-year-old nursing home patient who is in a persistent vegetative state with no hope of recovery, but is not expected to die in the near future.
Hilda Peter was a secretary at Irvington General Hospital. From 1982 until she became incapacitated, she lived with her close friend, Eberhard Johanning. In October 1984, he found her collapsed on their kitchen floor. She was resuscitated by paramedics but has remained comatose in a persistent vegetative state. Her body can maintain only the vegetative parts of neurological functions. There is no reasonable hope that she will ever regain any cognitive capacity. Since January 1985, she has been sustained by a nasogastric tube in a nursing home.
In 1983, Ms. Peter executed a power of attorney, which specifically authorized Eberhard Johanning
to make all decisions with respect to [her] health, as if he were next of kin; to hire physicians, nurses or other medical personnel if any, and all medical treatment which [she] require[s], and to be authorized to consent to any medical treatment, operation or medical procedure [she] might require, to be given full and complete authority to manage and direct [her] medical care.
In October 1985, Mr. Johanning filed a Complaint in the Superior Court, Chancery Division, seeking his appointment as guardian of Ms. Peter.*fn1 After an evidentiary hearing without a jury, the trial court adjudicated Ms. Peter an incompetent and appointed Mr. Johanning as her guardian. The court ordered that Mr. Johanning "not make any decisions to withhold or withdraw medical care or treatment without first notifying and obtaining the acquiescence of the State of New Jersey, Office of the Ombudsman for the Institutionalized Elderly."
By letter Mr. Johanning as Guardian requested that the Ombudsman approve removal of Ms. Peter's nasogastric tube. The Ombudsman investigated her situation and had her examined by two physicians. Relying on medical reports submitted by these physicians and Ms. Peter's attending physician, the Ombudsman found that:
Hilda Peter is a legally incompetent 65-year-old nursing home patient with major neurological impairments who has no expectation of coming out of her persistent vegetative state. She does not swallow reliably and requires nasogastric tube feedings to exist. Though she is vegetative without any hope of recovery, her physical condition is quite good. She could survive for many years, possibly decades. As long as the precise and careful nursing care that she now receives is maintained, she can continue in this state for an indeterminate length of time.
The Ombudsman concluded that "Hilda Peter would not have wanted to be kept alive by mechanical means in a persistent vegetative state." At the press conference he called to announce his decision, the Ombudsman was unequivocal on this point. "I am convinced," he stated, "that Hilda Peter would not have wanted to continue life in this way, and were she competent, her right to choose would be respected." Press
conference statement of Jack R. D'Ambrosio, Jr., Ombudsman for the Institutionalized Elderly (Mar. 6, 1986).*fn2 Nevertheless, the Ombudsman decided that our ruling in In re Conroy, 98 N.J. 321 (1985), precluded him from consenting to the removal of Ms. Peter's nasogastric tube. While the guardian's appeal from that decision was pending unheard in the Appellate Division, we granted his application for direct certification. 105 N.J. 517 (1986).*fn3
The cornerstone of our analysis of any request to decline life-sustaining medical treatment on behalf of an incompetent patient is our holding today in In re Farrell, 108 N.J. 335 (1987), that a competent patient has the right to refuse life-sustaining medical treatment. That right is not lost because of incompetency. See Conroy, supra, 98 N.J. at 356, 359-60; In re Quinlan, 70 N.J. 10, 41, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922, 97 S. Ct. 319, 50 L. Ed. 2d 289 (1976). All patients, competent or incompetent, with some limited cognitive ability or in a persistent vegetative state, terminally ill or not terminally ill, are entitled to choose whether or not they want life-sustaining medical treatment. We have previously explained that a surrogate decisionmaker may assert an incompetent patient's rights to self-determination and privacy. See Conroy, supra, 98 N.J. at 356; Quinlan, supra, 70 N.J. at 41. In order truly to preserve those rights, "the goal of decisionmaking for incompetent patients should be to determine and effectuate, insofar as possible, the decision that the patient would have made if competent." Conroy, supra, 98 N.J. at 360; see Quinlan, supra, 70 N.J. at 41.
Medical choices are private, regardless of whether a patient is able to make them personally or must rely on a surrogate. They are not to be decided by societal standards of reasonableness or normalcy. Rather, it is the patient's preferences -- formed by his or her unique personal experiences -- that should control.
The privacy that we accord medical decisions does not vary with the patient's condition or prognosis. The patient's medical condition is generally relevant only to determine whether the patient is or is not competent, and if incompetent, how the patient, in view of that condition, would choose to treat it were she or he competent.
The Ombudsman for the Institutionalized Elderly is involved in this case pursuant to his mandate under N.J.S.A. 52:27G-1 to -16 to guard against abuse of elderly nursing home patients.*fn4 Because of the particularly vulnerable nature of elderly incompetent patients in nursing homes, the Ombudsman must scrutinize all decisions to withhold or withdraw life-sustaining medical treatment from them. Conroy, supra, 98 N.J. at 383-85.
In Conroy, we considered the plight of "an elderly, incompetent nursing-home resident with severe and permanent mental and physical impairments and a life expectancy of approximately one year or less." Id. at 363. The Ombudsman can approve a surrogate decision to decline life-sustaining treatment on behalf of such a patient only when one of three tests is satisfied, viz:
1. It is clear that the particular patient would have refused the treatment under the circumstances involved. This is the "subjective" test. Id. at 360-64;
2. There is some trustworthy evidence that the patient would have refused the treatment, and the burdens (the pain and suffering) of the patient's continued life with the treatment markedly outweigh the benefits (any physical pleasure, emotional enjoyment or intellectual satisfaction) that the patient may still be able to derive from that life. This is the "limited-objective" test. Id. at 365-66; or
3. The pain and suffering of the patient's life with the treatment clearly and markedly outweigh the benefits that the patient derives from life, and the patient is suffering from so much pain that prolonging his life would be inhumane. This is the purely "objective" test. Id. at 367.
The Ombudsman believes that the tests and procedures set forth in Conroy control whether Ms. Peter's guardian can choose to withdraw the nasogastric tube that sustains her. We disagree. Conroy was specifically concerned with "elderly, formerly competent patients" like Claire Conroy, "who, unlike Karen Quinlan, are awake and conscious and can interact with their environment to a limited extent. . . . The capacities of such people, while significantly diminished, are not as limited as those of irreversibly comatose persons. . . ." Id. at 359. Ms. Peter is not a Claire Conroy-type patient. Rather, like Karen Quinlan, she is in a persistent vegetative state. In the cases of such patients, the one-year life-expectancy test and the limited-objective and objective tests set forth in Conroy are inapplicable, and we look instead primarily to Quinlan for guidance.
Under Quinlan, the life-expectancy of a patient in a persistent vegetative state is not an important criterion in determining whether life-sustaining treatment may be withdrawn. For this kind of patient, our "focal point . . . should be the prognosis as to the reasonable possibility of return to cognitive and sapient life, as distinguished from the forced continuance of . . . biological vegetative existence." 70 N.J. at 51. See generally Note, The "Terminal Condition" Condition in Virginia's Natural Death Act, 73 Va.L.Rev. 749, 771 (1987) (contrasting Quinlan 's "prognosis-based approach" with the approach of statutes that condition the right to decline treatment on the patient's life-expectancy).
Life-expectancy analyses assume that there are at least some benefits to be derived from the continued sustenance of an
incompetent patient. That assumption, which is usually valid, see President's Commission For the Study of Ethical Problems in Medicine and Biomedical Research, Deciding to Forego Life-Sustaining Treatment 3 (hereinafter President's Commission Report), quoted in In re Farrell, supra, 108 N.J. at 351, is not appropriate in the case of persistently vegetative patients such as Karen Quinlan or Ms. Peter. See infra at 375-376. In Quinlan, we recognized that most people would consider an artificially-prolonged vegetative existence "unendurable." 70 N.J. at 39-40. Since then other courts have similarly appreciated the special situation of surrogate decisionmakers for irreversibly vegetative patients, and have not made their option to choose among courses of medical treatment contingent on any life-expectancy test. See, e.g., Corbett v. D'Alessandro, 487 So. 2d 368 (Fla.Dist.Ct.App.), review denied, 492 So. 2d 1331 (Fla.1986) (deciding that husband of persistently vegetative patient could cause removal of her life-sustaining nasogastric tube); In re Torres, 357 N.W. 2d 332 (Minn.1984) (allowing conservator to cause life-sustaining respirator to be withdrawn from persistently vegetative patient); In re Colyer, 99 Wash. 2d 114, 660 P. 2d 738 (1983) (allowing husband to discontinue life-support system sustaining his wife in persistent vegetative state); see also Brophy v. New England Sinai Hosp., 398 Mass. 417, 435-36, 497 N.E. 2d 626, 636 (Mass.1986) (condemning long-term artificial sustenance of vegetative patients). Accordingly, we hold that the Conroy life-expectancy test is inapplicable in determining whether life-sustaining treatment may be withdrawn or withheld from a patient in a persistent vegetative state.
Initially the Ombudsman indicated that Ms. Peter's indefinite life-expectancy was the only reason he would not approve Mr. Johanning's decision to remove her nasogastric tube. On appeal to this Court, however, he has changed his position. He now contends that even without a life-expectancy threshold, Ms. Peter's nasogastric tube should not be removed. He argues that not enough evidence proves that she would want it disconnected
to satisfy Conroy 's "subjective" test, and that the lack of pain that she can experience in her vegetative state precludes withdrawal of the tube pursuant to Conroy 's "limited-objective" or "objective" tests.
The limited-objective and objective tests that we established for patients like Claire Conroy balance the benefits that a patient would experience by having his or her life extended by medical treatment against the "unavoidable pain" and suffering that he or she would feel as a result of the treatment. Conroy, supra, 98 N.J. at 365-67. Even in the case of a patient like Claire Conroy -- the type of patient for whom the balancing tests were created -- it can be difficult or impossible to measure the burdens of embarrassment, frustration, helplessness, rage, and other emotional pain,*fn5 or the benefits of enjoyable feelings like contentment, joy, satisfaction, gratitude, and well-being that the patient experiences as a result of life-sustaining treatment. "[M]edical experts are often unable to determine with any degree of medical certainty the extent of a non-verbal person's intellectual functioning or the depth of his emotional life." Conroy, supra, 98 N.J. at 368. Likewise, it is often "unclear whether and to what extent a patient such as Claire Conroy is capable of, or is in fact, experiencing [physical] pain." Id. at 367-68. For a perceptive analysis, see Cantor, Conroy: Best Interests and the Handling of Dying Patients, 37 Rutgers L. Rev. 543, 569 (1985).
While a benefits-burdens analysis is difficult with marginally cognitive patients like Claire Conroy, it is essentially impossible with patients in a persistent vegetative state. By definition such patients, like Ms. Peter, do not experience any of the ...