Matter of Conroy

HANDLER, J.,

concurring in part and dissenting in part.

When this case first reached us it presented the fate of an aged nursing home patient close to death and unconscious. Claire Conroy’s physical condition had deteriorated so much that she was totally dependent upon a nasogastric tube for essential nutriment, medication, and fluids. Her guardian, a nephew, sought to have the nasogastric tube removed and to allow her to die naturally. But Miss Conroy’s attending physician refused to remove this device. The guardian then sought judicial authorization for another doctor to remove the tube, but before the courts could finally act upon this request, Miss Conroy died.

Although the case became technically moot upon Miss Conroy’s death, we decided to resolve the issues raised by Miss Conroy’s guardian. We do so for sound reasons. This case exemplifies the terrible, constantly recurring life-or-death decision that confronts scores of individuals; the standards appropriate to guide judgments in making this kind of decision are confused and unsettled, posing real risks of improvident actions with incalculable and irremediable consequences; the record in this case adequately presents sufficient information to enable us to address most important concerns; and our disposition can furnish a springboard for appropriate and more comprehensive treatment of these problems by the Legislature. Perhaps most important, this decision may encourage individuals to use living wills.

*389The Court introduces its main discussion of the case with this observation, viz:

[P]atients and their families are increasingly asserting a right to die a natural death without undue dependence on medical technology or unnecessarily protracted agony — in short, a right to “die with dignity.” On the other hand, all persons have a fundamental right to expect that their lives will not be foreshortened against their will.
Deciding on a course of treatment for an incompetent patient without impinging on either of these two interests is a difficult task. To err either way — to keep a person alive under circumstances under which he would rather have been allowed to die, or to allow that person to die when he would have chosen to cling to life — would be deeply unfortunate. [Ante at 343-344.]

I agree with the Court’s articulation of this profound moral conundrum. It captures the heart of the problem. My disagreement is with the Court’s resolution as it relates to persons like Miss Conroy.

Like many other nursing home residents, Miss Conroy became incompetent and unconscious without ever having expressed her views regarding when, if ever, to forego treatment that might prolong her life. Thus the Court’s endorsement of a living will and its formulation of a “subjective test” that embodies the concept underlying a living will, ante at 360-363, can have no application to her. Therefore the Court develops two additional standards to govern the decision whether to terminate life-prolonging treatment on behalf of such incompetent, isolated, and soon-to-die nursing home residents whose preferences cannot be ascertained by using a living will concept as incorporated in a “subjective test.”

With respect to some of these nursing home residents, according to the Court, “there is some trustworthy evidence that the patient would have refused the treatment____” Ante at 365-366. As to such a person the Court would apply a “limited-objective test” to determine whether life-support treatment should be discontinued to allow death to occur without external interference. Under the limited-objective test the decision-maker must balance the “burdens of the treatment to the *390patient in terms of pain and suffering” against the “benefits that the patient is experiencing.” Id. at 365. This means, according to the Court,

that the patient is suffering, and will continue to suffer throughout the expected duration of his life, unavoidable pain, and that the net burdens of his prolonged life (the pain and suffering of his life with the treatment less the amount and duration of pain that the patient would likely experience if the treatment were withdrawn) markedly outweigh any physical pleasure, emotional enjoyment, or intellectual satisfaction that the patient may still be able to derive from life. [Ante at 365 (emphasis added).]

In determining whether this test is satisfied in a given situation, medical evidence is required to show “that the treatment would merely prolong the patient’s suffering and not provide him with any net benefit.” Id.

There are other nursing home residents facing imminent death for whom there is no available reliable evidence of their previous views regarding the cessation of life-prolonging treatment. For such persons the test prescribed by the Court to determine when such treatment may be withdrawn is labelled a “pure-objective test.” Ante at 365. Under this test the Court requires “recurring unavoidable and severe pain” before treatment may be stopped. Id. at 367. The Court implicitly requires medical evidence to support a conclusion that drugs and other therapy could not reduce pain. See id.

The present record suggests that Miss Conroy would exemplify this latter class of persons, that is, persons who had not in the past reliably indicated their views concerning the termination of life-prolonging procedures. Compare ante at 385 (suggesting that additional proofs might serve to place Miss Conroy in the intermediate category.) Thus no one knew if she would have wanted to forego the treatment that she was receiving in the nursing home during 1983 shortly before her death. Her nephew testified only that his aunt never saw a physician or received medical treatment prior to becoming incompetent. Further, she was atone; she had never married, her siblings *391had all died, and she lived by herself. Her social isolation typifies many elderly nursing home residents. Ante at 375.

Understanding that there was no reliable way to divine Miss Conroy’s possible wishes and recognizing the difficulty in evaluating her physical condition, the trial judge visited her bedside while she was living. He found that

Claire Conroy suffers from severe organic brain syndrome, necrotic decubitus ulcers on her left foot, left leg and left hip, urinary tract infection, arteriosclerotic heart disease, hypertension and diabetes mellitus. Except for minor movements of her head, neck, arms and hands, she is unable to move. She does not speak. She lies in bed in a fetal position. She sometimes follows people with her eyes, but often simply stares blankly ahead. Her general physical appearance is very withered. [In re Conroy, 188 N.J.Super. 523, 524-25 (1983).]

He concluded that “[a]ll the testimony in the case and my own direct observation of the patient convince me that she has no cognitive or volitional functioning. There is no reasonable expectation that the patient’s condition will ever improve.” [Id. at 525.]

Further, evidence failed to prove that Miss Conroy experienced, or could possibly experience, pain. Id.

Given these facts, it appears that, under the Court’s approach, the decision whether to withdraw life-sustaining procedures for Miss Conroy would be governed by the pure-objective test. In the final analysis, on the record before us, the application of this test, or for that matter, even the limited-objective test, would not have led to a more humane, dignified, and decent end of Claire Conroy’s mortal life. She would have died, as she did, with the nasogastric tube still in her body.

I harbor the most serious doubts as to the justice, efficacy, or humaneness of a standard that would require a person to die in this fashion.1 The Court should, therefore, formulate a standard that would, in these circumstances, permit a natural death *392with dignity and compassion. Such a standard should not give determinative weight to the element of personal pain, which necessarily obviates other extremely important considerations. Rather' it should accommodate as comprehensively, fairly, and realistically as possible all concerns and values that have a legitimate bearing on the decision whether to provide particular treatment at the very end of an individual’s life.

I

The legal issues in this case derive from a moral dilemma of an intensely and profoundly personal character. Unfortunately, in cases such as Miss Conroy’s, individuals incapable of helping themselves must have the dilemma resolved by others. The Court properly recognizes that any decision must be made based on the individual’s best interests, a collection of values that society will impute to incompetent persons who cannot express their own preferences. See ante at 365.

It is right for the Court to exercise its inherent parens patriae jurisdiction to determine the interests that are at stake in this litigation. This power derives from the sovereign’s “inherent equitable authority ... to protect those persons within the state who cannot protect themselves because of an innate legal disability.” In re Grady, 85 N.J. 235, 259 (1981).

It would be amiss, in the context relevant to Miss Conroy’s situation, to stress notions of individual privacy or autonomy in measuring a person’s best interests. Resorting to the values of individual privacy and autonomy in this setting cannot reveal the “true interests” of the incompetent person or effectuate any actual personal choice on her or his part. These individuals cannot presently choose. Further, by definition, they have never before reliably indicated their views or preferred choice in the matter. “What is really involved ... is not so much the incompetent’s right to personal choice — nature has already deprived her of that — but rather what is in her best interests.” Grady, supra, 85 N.J. at 274 (Handler, J. concurring). Hence, *393reliance upon the concepts of personal privacy and individual autonomy cannot enhance the ability to make critical life-or-death decisions. Thus, when the court’s jurisdiction is invoked in this setting, it is the fundamental interests of helpless persons that are at stake, and it becomes a judicial responsibility to intercede to preserve those interests under equitable principles.

In a recent California decision, the court properly recognized that it “would be derelict in [its] duties if [it] did not provide some general guidelines for future conduct in the absence of ... legislation” to protect the best interests of incompetent helpless, terminal individuals. Barber v. Superior Court, 147 Cal.App.3d 1006, 1019, 195 Cal.Rptr. 484, 491 (Cal.Ct.App.1983). The judicial task can be viewed as “establishing a framework in the law on which the activities of health care personnel and other persons” can be guided so as to act in the best interest of the patient. Superintendent of Belchertown v. Saikewicz, 373 Mass. 728, 736, 370 N.E.2d 417, 422-23 (1977); see President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment 136 (1983) (hereinafter President’s Commission Report). Because decisions of this type implicate so many interests, competing concerns and conflicting moral values, I. fully endorse the Court’s call for more comprehensive legislative treatment of this extraordinarily difficult and sensitive issue.

Absent legislative resolution of the matter, the judicial challenge remains. This Court must attempt to identify and define the nature of the interests of these helpless persons, to articulate guiding standards to preserve their interests, and to authorize a decision-making structure to assure sound determinations in accordance with such guidelines.

In my opinion, the Court’s objective tests too narrowly define the interests of people like Miss Conroy. While the basic *394standard purports to account for several concerns, it ultimately focuses on pain as the critical factor. The presence of significant pain in effect becomes the sole measure of such a person’s best interests. “Pain” thus eclipses a whole cluster of other human values that have a proper place in the subtle weighing that will ultimately determine how life should end.

The Court’s concentration on pain as the exclusive criterion in reaching the life-or-death decision in reality transmutes the best-interests determination into an exercise of avoidance and nullification rather than confrontation and fulfillment. In most cases the pain criterion will dictate that the decision be one not to withdraw life-prolonging treatment and not to allow death to occur naturally. First, pain will not be an operative factor in a great many cases. “[Presently available drugs and techniques allow pain to be reduced to a level acceptable to virtually every patient, usually without unacceptable sedation.” President’s Commission Report, supra, at 50-51; see id. at 19 n. 19 citing Saunders, “Current Views on Pain Relief and Terminal Care” in The Therapy of Pain 215 (Swerdlow, ed. 1981) (a hospice reports complete control of pain in over 99% of its dying patients); see generally id. at 277-95; see also generally The Management of Terminal Disease (Saunders, ed. 1978); The Experience of Dying (Pattison, ed. 1977); Psychopharmacologic Agents for the Terminally Ill and Bereaved (Goldberg et al., eds. 1973).2 Further, as was true in Miss Conroy’s case, health care providers frequently encounter difficulty in evaluat*395ing the degree of pain experienced by a patient.3 Finally, “[o]nly a minority of patients — fewer than half of those with malignancies, for example — have substantial problems with pain....” President’s Commission Report, supra at 278, citing Twycross, “Relief of Pain” in The Management of Terminal Disease, supra, at 66. Thus, in a great many cases, the pain test will become an absolute bar to the withdrawal of life-support therapy.

The pain requirement, as applied by the Court in its objective tests, effectively negates other highly relevant considerations that should appropriately bear on the decision to maintain or to withdraw life-prolonging treatment. The pain standard may dictate the decision to prolong life despite the presence of other factors that reasonably militate in favor of the termination of such procedures to allow a natural death. The exclusive pain criterion denies relief to that class of people who, at the very end of life, might strongly disapprove of an artificially extended existence in spite of the absence of pain. See In re Torres, 357 N.W. 332, 340 (Minn.1984) (although a patient “cannot feel pain,” that patient may have a guardian petition to forego *396life-sustaining treatment). Thus, some people abhor dependence on others as much, or more, than they fear pain. Other individuals value personal privacy and dignity, and prize independence from others when their personal needs and bodily functions are involved. Finally, the ideal of bodily integrity may become more important than simply prolonging life at its most rudimentary level. Persons, like Miss Conroy, “may well have wished to avoid ... ‘[t]he ultimate horror [not of] death but the possibility of being maintained in limbo, in a sterile room, by machines controlled by strangers.’ ” In re Torres, supra, 357 N.W. 2d at 340, quoting Steel, “The Right to Die: New Options in California,” 93 Christian Century [July-Dec. 1976],

Clearly, a decision to focus exclusively on pain as the single criterion ignores and devalues other important ideals regarding life and death. Consequently, a pain standard cannot serve as an indirect proxy for additional and significant concerns, that bear on the decision to forego life-prolonging treatments.

II

The President’s Commission Report rejects an exclusive focus on patient pain primarily because pain can often be relieved. This Report suggests the following course of action to decide whether to forego life-prolonging treatment.

In assessing whether a procedure or course of treatment would be in a patient’s best interests, the surrogate must take into account such factors as the relief of suffering, the preservation or restoration of functioning, and the quality as well as the extent of life sustained. [President’s Commission Report at 135 (footnote omitted).]

In considering the best interests of an incompetent patient, the California court in Barber approved this standard. 147 Cal. App. 3d at 1022, 195 Cal.Rptr. at 493.

The Court implicitly criticizes the President’s Commission Report’s approach. It fears that the ability to “ ‘take into account such factors as the relief of suffering, the preservation or restoration of functioning, and the quality as well as the extent of life sustained’ ... would create an intolerable risk for *397socially isolated and defenseless people suffering from mental and physical handicaps.” Ante at 367. The Court specifically eschews “decision-making based on assessments of the personal worth or social utility of another’s life....” Id. Such analysis mischaracterizes the “quality of life” standard. Indeed, the President’s Commission Report, supra, at 135 n. 43, expressly rejects any approach to resolving the difficult issue in cases like Miss Conroy’s that would entail an evaluation of the social utility of another person’s life.

I share the Court’s discomfiture with a standard that does not attempt to identify reasonably verifiable measures of a person’s quality of life. However, there is no intrinsic reason why a quality-of-life standard must remain any more vague and undefined than a standard that includes pain. The Court itself recognizes how a thorough medical investigation can be relied on to reveal information important in applying its subjective test.

[The] information [gathered] might include evidence about the patient’s present level of physical, sensory, emotional, and cognitive functioning; the degree of physical pain resulting from the medical condition, treatment, and termination of treatment, respectively; the degree of humiliation, dependence, and loss of dignity probably resulting from the condition and treatment; the life expectancy and prognosis for recovery with and without treatment; the various treatment options; and the risks, side effects, and benefits of each of those options. [7d]

Indeed the Court notes that the same type of evidence is relevant to a determination under the limited-objective test. Ante at 366. The Court thus implicitly concedes that a test that does not rely principally on the presence of pain can entail a meticulous medical investigation and verification.

I would therefore have the Court adopt a test that does not rely exclusively on pain as the ultimately determinative criterion. Rather, the standard should consist of an array of factors to be medically established and then evaluated by the decision-maker both singly and collectively to reach a balance that will justify the determination whether to withdraw or to continue life-prolonging treatment. The withdrawal of life-prolonging treatment from an unconscious or comatose, terminally ill indi*398vidual near death, whose personal views concerning life-ending treatment cannot be ascertained, should be governed by such a standard.

Several important criteria bear on this critical determination. The person should be terminally ill and facing imminent death. There should also be present the permanent loss of conscious thought processes in the form of a comatose state or profound unconsciousness. Further, there should be the irreparable failure of at least one major and essential bodily organ or system. See, e.g., In re Quinlan, 70 N.J. 10 (1976) (respiratory system); Barber, supra (same); In re Dinnerstein, 6 Mass.App. 466, 380 N.E. 2d 134 (1978) (heart); Saikewicz, supra (circulatory system); Conroy, supra (swallowing reflex); Torres, supra (cerebral cortex and brainstem); In re Hamlin, 102 Wash.2d 810, 689 P.2d 1372 (1984) (cerebral cortex). Obviously the presence or absence of significant pain is highly relevant.

In addition, the person’s general physical condition must be of great concern. The presence of progressive, irreversible, extensive, and extreme physical deterioration, such as ulcers, lesions, gangrene, infection, incontinence and the like, which frequently afflict the bed-ridden, terminally ill, should be considered in the formulation of an appropriate standard.4 The medical and nursing treatment of individuals in extremis and suffering from these conditions entails the constant and exten*399sive handling and manipulation of the body. At some point, such a course of treatment upon the insensate patient is bound to touch the sensibilities of even the most detached observer. Eventually, pervasive bodily intrusions, even for the best motives, will arouse feelings akin to humiliation and mortification for the helpless patient. When cherished values of human dignity and personal privacy, which belong to every person living or dying, are sufficiently transgressed by what is being done to the individual, we should be ready to say: enough.

Ill

In my view, our understanding as to how life should end must be infused with the fundamental human moral values that serve us while we live. As we have faced life, so should we be able to face death. When an individual’s personal philosophy or moral values cannot otherwise be brought to bear to resolve the dilemma of whether to live or die, then factors that generally and normally shape basic human moral values should be taken into account. These factors should be assessed reasonably and fairly from the patient’s perspective. They should be weighed and balanced by an appropriate, responsible surrogate decision-maker in reaching the final awesome decision whether to withdraw life-prolonging treatment from the unfortunate and hapless patient. I believe that a decision informed by these considerations would be conducive to the humane, dignified, and decent ending of life.

For reversal — Chief Justice WILENTZ and Justices CLIFFORD, SCHREIBER, POLLOCK, O’HERN and GARIBALDI— 6.

Dissenting in part; concurring in part —Justice Handler— 1.

Judge Stanton likewise concluded that “[i]f the patient’s life has become impossibly and permanently burdensome, then we simply are not helping the patient by prolonging her life, and active treatment designed to prolong life becomes utterly pointless and probably cruel.” 188 N.J.Super. at 528.

As early as the mid-19th century physicians recognized their ability to do much good by a palliative course, by alleviating pain, procuring sleep, guarding the diet, regulating the alimentary canal' — in fine, by obviating such sufferings as admit of mitigation ... Lastly, by a just prognosis ... we may sustain the patient and his friends during the inevitable course of the disease.

Jacob Bigelow, Care in the Absence of Cure-1835, reprinted in 85 Annals Int. Med. 825 (1976), quoted in President’s Commission Report, supra, at 50 n. 23.

There are two kinds of pain, acute and chronic. Acute, or transient, pain constitutes our common experience. See Twycross, “Relief of Pain" in The Management of Terminal Disease 71 (Saunders, ed. 1978). It passes relatively quickly, id., and usually can be treated simply and directly.

Chronic pain “wastes the patient’s strength and resolve and destroys whatever value he or she could have found in living.” President's Commission Report, supra, at 278. “Chronic pain is a situation rather than an event and it:

1. is impossible to predict when it will end;

2. usually gets worse rather than better;

3. lacks positive meaning;

4. frequently expands to occupy the patient’s whole attention; and when this happens, life is no longer worth living.”

Twycross, supra, at 71. Drug therapies to relieve chronic pain serve amidst several constraints. See id. at 72; see also President’s Commission Report at 279, 283 (when treating chronic pain, health care providers should continuously administer drugs rather than cycling between painful and pain-free periods). "Fortunately, the chronic pain of dying patients is almost always fairly easy to control.” Id. at 278.

The symptoms of physical deterioration may become more difficult to control as terminal illness progresses. In cases of terminal cancer, for example, several categories of changes are associated with the disease. See generally Calman, “Physical Aspects” in The Management of Terminal Disease, supra, at 39-43. These include: cachexia, a symptom complex associated with loss of weight, decreased body fat, protein, and carbohydrate, increased basal metabolic rate, and abnormal iron metabolism that leads patients to become weak and tired and to experience abnormal metabolic activity; malabsorption, as when cancer treatment may induce villous atrophy, impairing the body’s ability to absorb nutrients, leading to symptoms such as vitamin deficiency, skin and mucosal lesions, anemia, and decreased responsiveness to drugs; influences of previous treatment, which may have decreased the ability of *399various body tissues to function; kidney and liver problems; hematological problems; biochemical changes; infection and impaired immune response; and a decreased ability to metabolize drugs. Id.