108 N.J. 335 (1987) 529 A.2d 404

IN THE MATTER OF KATHLEEN FARRELL.

The Supreme Court of New Jersey.

Argued November 5, 1986. Decided June 24, 1987.

*340 Peter R. Strohm and John F. Gelson argued the cause for appellant, Peter R. Strohm, Guardian ad litem (Rothstein, Mandell, Strohm & Gelson, attorneys).

Joseph Purrazzella argued the cause for respondent, Francis Farrell.

John R. Heher submitted a brief on behalf of amicus curiae New Jersey Hospital Association (Smith, Stratton, Wise, Heher & Brennan, attorneys; John Heher and Wendy L. Mager, on the brief).

Fenalla Rouse and Elena N. Cohen, members of the New York bar, and Jo Anne C. Adlerstein submitted a brief on behalf of amicus curiae Society for the Right to Die, Inc. (Stern, Dubrow & Marcus, attorneys).

The opinion of the Court was delivered by GARIBALDI, J.

Death comes to everyone. However, in our society, due to great advances in medical knowledge and technology over the last few decades, death does not come suddenly or completely unexpectedly to most people. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment 15 (1983) (hereinafter President's Commission Report).^[1] Instead, most people who die are under the treatment of health care professionals who are able to continue physical existence for human beings "even when most of our physical and mental capacities have been irrevocably lost." In re Conroy, 98 N.J. 321, 343 (1985). While medical advances have made it possible to forestall and cure certain illnesses previously considered fatal, they also have prolonged the slow deterioration and death of some patients. Sophisticated life-sustaining *341 medical technology has made it possible to hold some people on the threshold of death for an indeterminate period of time, "obfuscat[ing] the use of traditional definition of death." In re Quinlan, 70 N.J. 10, 27, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922, 97 S.Ct. 319, 50 L.Ed.2d 289 (1976). Questions of fate have thereby become matters of choice raising profound "moral, social, technological, philosophical, and legal questions involving the interplay of many disciplines." Matter of Conroy, supra, 98 N.J. at 344; see Perspectives on J. Katz, The Silent World of Doctor and Patient, 9 W. New Eng.L.Rev. 1 (1987).

We are faced with such issues in this case, and In re Peter, 108 N.J. 365 (1987), and In re Jobes, 108 N.J. 394 (1987), also decided today. Specifically, these three appeals concern the withdrawal of life-sustaining treatment from three women suffering from incurable and irreversible medical conditions. Because of their ages, places of residence, and medical conditions, none of their cases falls within the factual pattern of either of our seminal decisions, Quinlan, supra, 70 N.J. 10, or Conroy, supra, 98 N.J. 321. Kathleen Farrell, a thirty-seven-year-old, competent, terminally-ill patient suffering from amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig's disease, died at home. Hilda Peter is a sixty-five-year-old nursing home resident in a persistent vegetative state, and Nancy Jobes is a thirty-one-year-old nursing home resident in a persistent vegetative state. Neither Ms. Peter nor Mrs. Jobes is expected to die within a year. The variety of these cases illustrates the infinite number of situations that call for decisionmaking about life-sustaining medical treatment. We recognize, as we did in Conroy, and as have numerous other courts, that given the fundamental societal questions that must be *342 resolved, the Legislature is the proper branch of government to set guidelines in this area:^[2]

*343 Because the issue with all its ramifications is fraught with complexity and encompasses the interests of the law, both civil and criminal, medical ethics and social morality, it is not one which is well-suited for resolution in an adversary judicial proceeding. It is the type [of] issue which is more suitably addressed in the legislative forum, where fact finding can be less confined and the viewpoints of all interested institutions and disciplines can be presented and synthesized. In this manner only can the subject be dealt with comprehensively and the interests of all institutions and individuals be properly accommodated. [Conroy, supra, 98 N.J. 344-45, (quoting Satz v. Perlmutter, 379 So.2d 359, 360 (Fla. 1980), aff'g 362 So.2d 160 (Fla. Dist. Ct. App. 1978)).]

Accord In re Barber, 147 Cal. App.3d 1006, 1016-17, 195 Cal. Rptr. 484, 488 (Cal.Ct.App. 1983); Severns v. Wilmington Medical Center, 421 A.2d 1334, 1346 (Del. 1980); In re Eichner, 52 N.Y.2d 363, 382, 420 N.E.2d 64, 74, 438 N.Y.S.2d 266, 276, cert. denied, 454 U.S. 858, 102 S.Ct. 309, 70 L.Ed.2d 153 (1981); In re Hamlin, 102 Wash.2d 810, 821-22, 689 P.2d 1372, 1379 (1984).

Nevertheless, patients and their families and physicians are increasingly being faced with these difficult and complex decisions without legislative guidelines and under the threat of civil and criminal liability. Until the Legislature acts, it is to the courts that the public must look for the guidelines and procedures under which life-sustaining medical treatment may be withdrawn or withheld. Sensitive to the patients' rights to self-determination, but cognizant of the vulnerability of the *344 sick, we strive to protect all the relevant interests. We approach this task with great humility, for we recognize that "[t]o 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." Conroy, supra, 98 N.J. at 343.

As in Quinlan and Conroy, we do not today determine whether life-sustaining medical treatment should be withdrawn from any of the patients in these cases, but rather define who may make such a decision and how it may be made.

I

Although we stated the general principle that competent informed patients have the right to decline life-sustaining treatment in both Quinlan, supra, 70 N.J. at 39, and Conroy, supra, 98 N.J. at 347, each of those cases involved an incompetent institutionalized patient. In this case we deal for the first time with the right of a competent, terminally-ill adult patient living at home to withdraw a life-sustaining respirator.

Kathleen married Francis Farrell in 1969. They had two children. Prior to her illness, Mrs. Farrell worked as a keypunch operator. In November 1982, she began to experience symptoms associated with ALS, a disorder of the nervous system that results in degeneration of the victim's muscles. Although it eventually renders a patient incapable of movement, ALS does not impair the patient's mental faculties. The cause of the disease is unknown and there is no available treatment or cure. At the time of diagnosis, a victim's life expectancy even with life-sustaining treatment is usually one to three years.

After she became ill, Mrs. Farrell was admitted to a Philadelphia hospital where she underwent a tracheotomy and was *345 connected to a respirator.^[3] In the autumn of 1983, she was released from the hospital because it could provide no further help for her condition. She returned home to live with her husband and their two teenage sons. Thereafter Mrs. Farrell was paralyzed and confined to bed in need of around-the-clock nursing care. Insurance covered all the expenses of this care.

In November 1985, after an experimental program that her husband characterized as "their last hope" had failed, Mrs. Farrell told him that she wanted to be disconnected from the respirator that sustained her breathing. Mr. Farrell told her doctor, John Pino, of her decision. The doctor advised Mrs. Farrell that she would die if her respirator were removed. Dr. Pino arranged for a psychologist, Dr. Jean Orost, to interview Mrs. Farrell. Dr. Orost determined that Mrs. Farrell was not clinically depressed and needed no psychiatric treatment. She concluded that Mrs. Farrell had made an informed, voluntary, and competent decision to remove the respirator. Dr. Orost continued to see Mrs. Farrell on a weekly basis from the time of their first interview in January 1986 until her death the following June.

On June 13, 1986, Francis Farrell filed a Chancery Division complaint seeking his appointment as Special Medical Guardian for his wife with specific authority to disconnect her respirator. He also sought a declaratory judgment that he and anyone who assisted him in disconnecting her respirator would incur no civil or criminal liability. The trial court executed an Order to Show Cause, which set June 16, 1986, as the return date, and appointed a guardian ad litem for the children.

Part of the trial was conducted at the Farrells' home in order to enable Mrs. Farrell to testify. The court described Mrs. Farrell's medical condition at the time of the trial as follows:

*346 Mrs. Farrell presently appears to be a very fragile woman, weighing less than 100 pounds. In December 1982 she weighed 161 pounds. She has no control over her hands, arms, feet or legs, is incontinent as to bowel, and has difficulty with bladder function. She has difficulty in swallowing and is fed liquids, such as fruit juices, with a syringe by nurses who attend to her needs 24 hours a day. She is incapable of taking any solid foods by mouth. She is able to open and close her eyes and can see but has difficulty in talking. During her testimony, a court reporter took down what she said, and her husband at times repeated her answers to questions. Her answers were generally limited to yes or no, and at times an alphabet board was used to be certain her answer was understood. Her mouth tended to fill up with saliva and made her answers difficult to understand at times. When her children and better days were discussed with Mrs. Farrell, her eyes filled with tears and her husband assisted her in blowing her nose. She is incapable of moving her head, neck, or any other part of her body. On occasion she is put in a reclining chair and can watch television although she stated she usually falls asleep. She has pain in her arms and back, but medication does relieve it to some extent.

[In re Farrell, supra, 212 N.J. Super. at 296-97.]

At the trial, Mrs. Farrell testified that she had discussed her decision to withdraw the respirator with her husband, their two sons, her parents, her sister, and her psychologist, Dr. Orost. These discussions had been upsetting, but resulted in open and full communication among all the parties. Mrs. Farrell had also discussed the consequences of her decision with a respiratory specialist, Dr. Sollami. When Mrs. Farrell was asked why she had decided to disconnect her respirator and to let nature take its course, she responded, "I'm tired of suffering."

Dr. Orost testified that Mrs. Farrell's decision was not the result of a mere whim or casual decision. The doctor's opinion was based on the weekly discussions she had been having with Mrs. Farrell over the prior six months. Additionally, a Board-certified psychologist examined Mrs. Farrell at the request of the attorney for the children's guardian. He testified that she was competent to make the decision.

After closing arguments on June 23, 1986, the trial court granted all the relief that Mr. Farrell had requested, but stayed his order pending appellate review. The next day Peter Strohm, the guardian for the children, filed a notice of appeal with the Appellate Division and petitioned this court for direct certification. On June 25, 1986, Mr. Farrell's counsel filed a *347 letter memorandum joining in the request of the guardian.^[4] We granted certification on June 27, 1986. 104 N.J. 446.

On June 29, 1986, Mrs. Farrell died while still connected to the respirator. Despite her death, both the guardian ad litem and Mr. Farrell have urged us to address her case and formulate guidelines that might aid future patients, their loved ones, and their physicians in dealing with similar situations. Because of the extreme importance of the issue and the inevitability of cases like this one arising in the future, see In re Conroy, supra, 98 N.J. at 342, we agree to render a decision on the merits.

II

In resolving this case, as well as the two other cases we decide today, we build on the principles established in Quinlan and Conroy. Hence, we start by reaffirming the well-recognized common-law right of self-determination that "[e]very human being of adult years and sound mind has a right to determine what shall be done with his own body...." Schloendorff v. Society of New York Hosp., 211 N.Y. 125, 129-30, 105 N.E. 92, 93 (1914) (Cardozo, J.). In Conroy, we stated that "[t]he right of a person to control his own body is a basic societal concept, long recognized in the common law." 98 N.J. at 346. We explained that the doctrine of "informed consent" was developed to protect the right to self-determination in matters of medical treatment. Id. at 346-48. This doctrine prescribes the "duty of a physician to disclose to a patient information that will enable him to evaluate knowledgeably the options available and the risks attendant upon each before subjecting that patient to a course of treatment." Perna v. Pirozzi, 92 N.J. 446, 459 (1983) (citations omitted); see Conroy, supra, 98 N.J. at 346.

*348 As medical technology has been advancing, the doctrine of informed consent has been developing.^[5] Thus, in Conroy we recognized the patient's right to give an informed refusal to medical treatment as the logical correlative of the right to give informed consent. We stated that "a competent adult person generally has the right to decline to have any medical treatment initiated or continued." Conroy, supra, 98 N.J. at 347.

While we held that a patient's right to refuse medical treatment even at the risk of personal injury or death is primarily protected by the common law, we recognized that it is also protected by the federal and state constitutional right of privacy. See id. at 348; Quinlan, supra, 70 N.J. at 38-42.

Numerous other courts have upheld the right of a competent patient to refuse medical treatment even if that decision will hasten his or her death. See, e.g., Bouvia v. Superior Court, 179 Cal. App.3d 1127, 225 Cal. Rptr. 297 (Cal.Ct.App. 1986), review denied (June 5, 1986); Bartling v. Superior Court, 163 Cal. App.3d 186, 209 Cal. Rptr. 220 (Cal.Ct.App. 1984); In re Osborne, 294 A.2d 372 (D.C. 1972); Satz v. Perlmutter, 362 So.2d 160 (Fla. Dist. Ct. App. 1978), aff'd, 379 So.2d 359 (Fla. 1980); In re Brooks' Estate, 32 Ill.2d 361, 205 N.E.2d 435 (1965); Lane v. Candura, 6 Mass. App. Ct. 377, 376 N.E.2d 1232 (1978), cited with approval in Brophy v. New England Sinai Hosp., 398 Mass. 417, 497 N.E.2d 626 (1986); In re Requena, 213 N.J. Super. 443 (App.Div. 1986), aff'g 213 N.J. Super. 475 (Ch. Div. 1986); In re Quackenbush, 156 N.J. Super. 282 (Morris County Ct. 1978), cited with approval in Conroy, supra, 98 N.J. at 347.

Nevertheless, the right to refuse life-sustaining medical treatment is not absolute. The state has at least four potentially countervailing interests in sustaining a person's life:

*349 preserving life, preventing suicide, safeguarding the integrity of the medical profession and protecting innocent third parties. [Conroy, supra, 98 N.J. at 348-49 (citing Satz v. Perlmutter, supra, 362 So.2d at 162; In re Spring, 380 Mass. 629, 640, 405 N.E.2d 115, 123 (1980); Commissioner of Correction v. Myers, 379 Mass. 255, 261, 399 N.E.2d 452, 456 (1979); Saikewicz v. Superintendent of Belchertown State School, 373 Mass. 728, 738, 370 N.E.2d 417, 426 (1977); In re Torres, 357 N.W.2d 332, 339 (Minn. 1984); In re Colyer, 99 Wash.2d 114, 121, 660 P.2d 738, 743 (1983); President's Commission Report, supra, at 31-32; Note, "In re Storar: The Right to Die and Incompetent Patients," 43 U.Pitt.L.Rev. 1087, 1092 (1982)).]

When a party declines life-sustaining medical treatment, we balance the patient's common-law and constitutional rights against these four state interests. In this case, none of these interests, as we interpreted them in Conroy, nor their concert, outweighs Kathleen Farrell's rights to privacy and self-determination.

The state's interest in preserving life embraces "an interest in preserving the life of the particular patient, and an interest in preserving the sanctity of all life." Conroy, supra, 98 N.J. at 349. Neither of those interests is compelling in this case. In Conroy, we decided that the value of life is desecrated not by a decision to refuse medical treatment but "by the failure to allow a competent human being the right of choice." Id. at 350 (quoting Saikewicz v. Superintendent of Belchertown State School, supra, 373 Mass. at 742, 370 N.E.2d at 426 (1977)). Thus, "[i]n cases that do not involve the protection of the actual or potential life of someone other than the decision-maker, the state's indirect and abstract interest in preserving the life of the competent patient generally gives way to the patient's much stronger personal interest in directing the course of his own life." Conroy, supra, 98 N.J. at 350.

The next two state interests that we consider in rejection-of-treatment cases, i.e., preventing suicide and safeguarding the integrity of the medical profession, are not threatened by Mrs. Farrell's decision. In Conroy, we determined that the State's interest in preventing suicide is "motivated by, if not *350 encompassed within," its interest in preserving life. Id. (citing N.J.S.A. 30:4-26.3a and N.J.S.A. 2C:11-6.)^[6] We explained that

declining life sustaining medical treatment may not properly be viewed as an attempt to commit suicide. Refusing medical intervention merely allows the disease to take its natural course; if death were to eventually occur, it would be the result, primarily of the underlying disease, and not the result of a self-inflicted injury.

[Id. at 350-51.]

Courts in other jurisdictions have consistently agreed that refusal of life-supporting treatment does not amount to an attempt to commit suicide. See, e.g., Bartling v. Superior Court, supra, 163 Cal. App.3d at 195-97, 209 Cal. Rptr. at 225-26; Foody v. Manchester Memorial Hosp., 40 Conn. Supp. 127, ___, 482 A.2d 713, 720 (Super.Ct. 1984); Satz v. Perlmutter, supra, 362 So.2d at 162-63; Brophy v. New England Sinai Hosp., supra, 398 Mass. at 438, 497 N.E.2d at 638; In re Eichner, supra, 52 N.Y.2d at 377-78 n. 6, 420 N.E.2d at 71 n. 6, 438 N.Y.S.2d at 273 n. 6; Leach v. Akron General Medical Center, 68 Ohio Misc. 1, 10, 426 N.E.2d 809, 815 (Ohio Com.Pl. 1980); Colyer, supra, 99 Wash.2d at 121, 660 P.2d at 743.

Similarly, medical ethics create no tension in this case. Our review of well-established medical authorities finds them in unanimous support of the right of a competent and informed patient such as Mrs. Farrell to decline medical treatment. The New Jersey State Board of Medical Examiners has expressly stated that a "competent adult has the right to accept or refuse medical treatment" even when the refusal is "likely to result in natural death." Policy Statement of the New Jersey State Board of Medical Examiners On Decision to Withhold or Withdraw Medical Treatment 1-2 (July 1986). The New Jersey Chapter of the American College of Physicians has similarly concluded that "a competent individual has the legal right to *351 make what some people might consider to be the `wrong' decision" with regard to life-sustaining treatment. New Jersey Chapter of the American College of Physicians Executive Council Policy Statement on Care of Irreversibly Ill Patients (Oct. 1986); accord Report of the Judicial Council of the American Medical Association, 253 J.A.M.A. 2424 (1985); American Hospital Association Policy Statement of Patients' Choices of Treatment Options (Feb. 1985); Los Angeles County Medical and Bar Associations, Principles and Guidelines Concerning the Foregoing of Life Sustaining Treatment for Adult Patients (Jan. 1986); Resolution of the Massachusetts Medical Society (July 17, 1985).

The President's Commission also explicitly concluded that the authority of competent, informed patients to make health care decisions for themselves encompasses the prerogative to forgo treatment and allow death to occur:

The voluntary choice of a competent and informed patient should determine whether or not life-sustaining therapy will be undertaken, just as such choices provide the basis for other decisions about medical treatment. Health care institutions and professionals should try to enhance patients' abilities to make decisions on their own behalf and to promote understanding of the available treatment options.... Health care professionals serve patients best by maintaining a presumption in favor of sustaining life, while recognizing that competent patients are entitled to choose to forego any treatments, including those that sustain life.

[President's Commission Report, supra, at 3.]

Health care standards are not undermined by the medical authorities that support the right to self-determination that we recognize today. Even as patients enjoy control over their medical treatment, health-care professionals remain bound to act in consonance with specific ethical criteria. We realize that these criteria may conflict with some concepts of self-determination. In the case of such a conflict, a patient has no right to compel a health-care provider to violate generally accepted professional standards. Cf. President's Commission Report, supra, at 44. ("A health care professional has an obligation to allow a patient to choose from among medically acceptable treatment options ... or to reject all options. No one, however, *352 has an obligation to provide interventions that would, in his or her judgment, be countertherapeutic.")

When courts refuse to allow a competent patient to decline life-sustaining treatment, it is almost always because of the state's interest in protecting innocent third parties who would be harmed by the patient's decision. "[F]or example, courts have required competent adults to undergo medical procedures against their will if necessary to protect the public health, ... or to prevent the emotional and financial abandonment of the patient's minor children." Conroy, supra, 98 N.J. at 353; see, e.g., Application of President & Directors of Georgetown College, 331 F.2d 1000, 1008 (D.C. Cir.), cert. denied, 377 U.S. 978, 84 S.Ct. 1883, 12 L.Ed.2d 746 (1964) (ordering transfusion because of a mother's "responsibility to the community to care for her infant"); Holmes v. Silver Cross Hosp., 340 F. Supp. 125, 130 (N.D.Ill. 1972) (noting that a father can similarly be forced to undergo a transfusion if his refusal would devastate his dependents); John F. Kennedy Memorial Hosp. v. Heston, 58 N.J. 576 (1971) (ordering blood transfusion for a pregnant woman).

Although Mrs. Farrell left behind two teenage sons, her case is manifestly distinguishable from those in which a parent could be forced to accept treatment because his or her prospect for recovery was good and the parent's death threatened the security of a child or children. Mrs. Farrell did not disregard her children's interest when she decided to withdraw the respirator. In fact, she based her decision in part on her recognition that her medical condition had already put them under extreme stress. Moreover, Mr. Farrell's capacity to care for them in her absence is unquestioned. Therefore the state's interest in protecting innocent third parties does not militate against Mrs. Farrell's decision. See In re Osborne, supra, 294 A.2d 372, 374 (upholding patient's right to refuse treatment in part because patient had provided for his children); cf. In re Brooks Estate, supra, 32 Ill.2d at 369-70, 205 N.E.2d at 440 (upholding right to *353 refuse treatment) (noting that the decision might have been different if the patient had minor children who were put at risk by his decision).

The guardian ad litem appointed by the Court to protect the children concluded that they would not be harmed if the court granted relief. His position was based on personal meetings with the children and on a report he received from a psychiatrist who had interviewed them. However, we need not rely on his testimony. Where the evidence reveals a close, loving family like the Farrells, we presume that when the parents make medical decisions, they are concerned about and will protect their children's interests. See infra, 108 N.J. at 355-356; see also Wisconsin v. Yoder, 406 U.S. 205, 213-14, 92 S.Ct. 1526, 1532, 32 L.Ed.2d 15, 24 (1972) (upholding parents' rights to assume primary role in making decisions that will affect their children). A guardian ad litem for the children is, therefore, unnecessary in the case of a family like the Farrells.

In light of all of the foregoing, we hold that the state's interests did not outweigh Mrs. Farrell's right to withdraw her respirator. We find direct support for our conclusion in Satz v. Perlmutter, supra, 379 So.2d 359, in which the Florida Supreme Court similarly held that a competent patient suffering from ALS was entitled to discontinue his respirator.

IV

Mindful that we heard this case in order to help future patients like Mrs. Farrell, and their families and doctors, we herewith summarize our analysis and set forth the procedures that will be applicable when competent patients who are living at home request the discontinuance of life-sustaining medical treatment.

*354 First, it must be determined that the patient is competent^[7] and properly informed about his or her prognosis, the alternative treatments available, and the risk involved in the withdrawal of the life-sustaining treatment. See generally Schultz, supra, 95 Yale L.J. at 233-48 (discussing how the increasing legal recognition of patients' interests in choosing among medical alternatives should increase the amount of medical information that doctors provide to them). Then it must be determined that the patient made his or her choice voluntarily and without coercion. After these assessments have been made, the patient's right to choose to disconnect the life-sustaining apparatus must be balanced against the four potentially countervailing state interests discussed above. Generally, a competent informed patient's "interest in freedom from nonconsensual invasion of her bodily integrity would outweigh any state interest." Conroy, supra, 98 N.J. at 355.

A competent patient's right to exercise his or her choice to refuse life-sustaining treatment does not vary depending on whether the patient is in a medical institution or at home. Many people wish to die at home in familiar surroundings. And, in many cases, hospitals discharge terminally- or irreversibly-ill patients. President's Commission Report, supra, at 103. Accordingly, medical care in the home, especially for terminally and irreversibly ill patients, is increasing. See Congresswomen Discuss Home Care, Caring, March 1986, at 44. Evidence of this trend is the development of hospice programs, which are premised on the belief that home is almost always the best place to die and that traditional medical care facilities, especially hospitals, often cannot properly accommodate the *355 needs of their dying patients, and may be unnecessarily costly. See President's Commission Report, supra, at 112-14.

We see no reason to fear that a patient at home is more vulnerable than one in an institution. In fact, probably just the opposite is true. Presumably, the patient receiving life-sustaining treatment at home has a caring family or friend in attendance; otherwise, institutional care would be necessary. Our common human experience teaches us that family members