In Re the Guardianship of Grant

747 P.2d 445, 109 Wash. 2d 545

• Court: Washington Supreme Court
• Decided: July 15, 1988
• Docket: 52609-5
• Status: Published

Opinions

Callow, J. —

This case involves the situation of Barbara Grant, an individual suffering from the incurable neurological disorder known as Batten's disease. Barbara's mother and legal guardian, Judith Grant, sought a court order that would authorize the future withholding of mechanical or artificial life sustaining procedures from Barbara. The trial court denied the request, and Judith Grant appealed directly to this court. Following oral argument, we issued an order reversing the trial court's decision. The order provided:

The guardian, Judith Grant, natural mother of Barbara Grant, is authorized to approve and direct the withholding of life sustaining procedures utilizing mechanical or other artificial means including cardiopulmonary resuscitation, defibrillation, the use of a respirator, intu-bation, the insertion of a naso-gastric tube, and intravenous nutrition and hydration.

With this opinion we state the reasons for our ruling.

Barbara Grant is one of four children of Judith and Gary Grant. Barbara, now 22 years old, is afflicted with the terminal illness known as Batten's disease. Her brothers, Edward (24) and Jeffrey (18), are also afflicted with this disease. Only her sister, Joy Lynn (15), is not similarly afflicted.

Batten's disease is a genetic, neurological, degenerative condition of the central nervous system. There is no known cure. Most victims die in their teens or early twenties.

Victims of the disease usually start life as normal appearing children. The first symptom is a problem with vision, followed by epileptic seizures and a loss of motor control which causes the child to stagger. Later, the child has speech difficulties. Eventually the child can no longer walk or talk and is completely blind. Batten's disease also causes severe mental retardation, with intellectual functions progressively failing. The child develops difficulty with swallowing, caused by a loss of voluntary muscle control. Brain control of the heart and lungs deteriorates, initially causing irregular heart rate and breathing, and finally, cardiac or respiratory arrest. Ultimately the child's vital functions fail, resulting in death.

Barbara Grant has followed the typical pattern of Batten's disease. She was a normal child with, at first, normal to above average intelligence. At age 5 she began to have vision problems. By 1978, when Barbara was 14, her parents could no longer meet her special needs and she was admitted to the Rainier State School in Buckley, Washington. Barbara's brother Edward, also afflicted with Batten's disease, moved with her to the school. At this time, Barbara was declared legally incompetent and her mother was appointed as her legal guardian.

When she arrived at the school in 1978, Barbara was blind, somewhat verbal, able to answer questions, and able to take care of herself in terms of self-help skills and feeding. She was walking with light assistance. She was described as moderately retarded, with a mental age of 6 years. Since then her condition has deteriorated dramatically.

Dr. Albert de Vera became Barbara's primary care physician in June 1984. He testified that by this time, Barbara was not only blind, but also had difficulty swallowing, virtually no speech or voluntary movements, and epileptic seizures from two to nine times a month. These findings are corroborated by a psychological report filed in October 1984. Although Barbara was alert and responsive to stimulation, and could react to various sounds, she could barely communicate, being able to produce only "throaty noises, vowel sounds and high-pitched whines" that occasionally resembled the words "hi", "no", and "help". Her mental age was estimated at about 2 months.

During the next year, Barbara's condition continued to deteriorate. By October 1985, she had lost all of her self-help skills. She could not walk or feed herself, and had urinary and bowel incontinence. She could not turn from side to side in bed, lying most of the time on her right side with her hands clenched or crossed and tightly pulled to her chest. She could not sit up in a wheelchair by herself, had no control over her head and only limited use of her hands. She had to be tied in bed to be restrained from harmful movement caused by seizures. She had more and more difficulty swallowing food.

Barbara's intellectual and cognitive functions had virtually disappeared toward the end of 1985. She was unable to respond to a standard intelligence test, and the psychologist at Rainier School estimated her mental age to be between 2 weeks and IV2 months. Barbara had, at most, only a fleeting awareness of her environment. Although she could still respond to sound, she showed little if any awareness of music. She would occasionally smile or laugh, but at inappropriate times. She could still feel sensation and respond to touch, and occasionally differentiate between people she liked and disliked. However, she no longer responded at all to the presence of her father, mother, or brother, Edward.

Barbara's condition had also begun to affect the autonomic respiratory and cardiac regulation centers of the brain. On one occasion in September 1985, her pulse rate dropped, her breathing became irregular and she started to pale. The medical nurse at Rainier School gave Barbara cardiopulmonary resuscitation and administered oxygen. Barbara was then transported to Harborview Medical Center in Seattle. After observing her for 4 hours, the physicians at Harborview determined that her respiratory distress was caused by Batten's disease, and that there was no further treatment that could improve her condition. Barbara was sent back to Rainier School that same night.

Physicians from both Rainier School and Harborview agree that Barbara is now in the latter stages of Batten's disease with no hope of improvement. Although they cannot state precisely when she will die, they agree that her death in the near future is inevitable. Paul Hageman, staff physician at Rainier School, testified, "I believe Barbara will die shortly from this disease." Dr. Hageman further stated that Barbara is "near death being nearly comatose . . ." R. H. A. Ruvalcaba, clinical director at Rainier School, testified that Barbara is in the terminal stages of the disease and "in an almost vegetative state with little if any response to human contact." Dr. de Vera, Barbara's primary treating physician at Rainier School, stated that she showed "clinical signs of progressive deterioration that appear to herald the terminal stages of her disease". Dr. Oscar Erikslund, another physician at Rainier, testified that her death could come "at any time;" and Dr. Michael Copass of Harborview stated that, based on his knowledge of Barbara's condition, he expects she will die soon.

Barbara Grant is no longer capable of expressing how she feels about her life. In addition, she has never explicitly expressed her desires regarding the use of life sustaining medical treatment should that become necessary in the future. Her mother believes she would not want such treatment, based partly on the fact that Barbara has shown a dislike for taking medication, being made to use a cane, and having suction tubes used on her, and also because Barbara has shown a dislike for the medical staff. Barbara's mother said she also believes that Barbara is prepared for her death. Father James Boyle, the chaplain at Rainier School, concurs. He has known Barbara and her family, who are devout Catholics, for almost 10 years. He said he has spoken often to Barbara, and that she understood she would die at an early age. Father Boyle believes that Barbara has come to accept death and looks at her life as a gift which she has a right to give back to God.

Barbara's mother testified that she wants Barbara to die as naturally and peacefully as possible, without the application of intrusive medical treatment to merely delay the inevitable. She stated, "I think it's time for man to stand back and let God take over." Barbara's father expressed the same view, as have other members of her immediate family.

On October 2, 1985, Judith Grant, Barbara's mother, moved in Pierce County Superior Court for an "Order Authorizing the Withholding of. Life Support Systems" from her daughter. Although the order does not specify which means of life support the Grants wish to have withheld, their brief before this court indicates that they do not want the following to be used if Barbara should suffer either cardiac or respiratory arrest or if she should lose her ability to swallow: (1) cardiopulmonary resuscitation; (2) a defibrillator (used to revive the heart); (3) an artificial respirator; (4) intubation (insertion of a tube down the throat to the lungs for breathing); (5) a nasogastric tube (nose-to-throat tube for artificial feeding); and (6) intravenous feeding.

The Grants sought the present order because Rainier, a state-operated school, had a stated policy of using all measures necessary to sustain the life of an individual and, if the necessary treatment was not available at Rainier, to transport the individual to another hospital where treatment was available. The attorney general representing Rainier School stated, however, that the school would follow the guardian's wishes if the court entered an order upholding the Grants' motion.

Prior to the trial court hearing on this matter, a guardian ad litem and a separate "attorney for Barbara Grant" were appointed. At the hearing, Judith Grant, Barbara's immediate family, and the guardian ad litem all asked to have life support systems withheld. Hugh Robinson, the "attorney for Barbara Grant", was the only person to oppose this motion.

The trial court denied the motion to withhold life support systems. The court ruled the action "premature" because (1) Barbara's condition, although terminal and incurable, had not yet degenerated to a comatose or vegetative state; and (2) Barbara was not yet faced with the need for intrusive medical procedures. The court also ruled that any relief it might grant would not be binding on "the State" (i.e., Rainier School) since it was not a party to the proceeding. Judith Grant appealed directly to this court and we accepted review.

I

The first issue presented is whether an incompetent patient in an advanced stage of a terminal and incurable illness, suffering severe and permanent mental and physical deterioration, has the right to have life sustaining treatment withheld. It is now well established that this right extends to persons who are in an irreversibly comatose or persistent vegetative state, with no reasonable chance of returning to a sapient state. In re Colyer, 99 Wn.2d 114, 660 P.2d 738 (1983); In re Hamlin, 102 Wn.2d 810, 689 P.2d 1372 (1984); John F. Kennedy Mem. Hosp., Inc. v. Bludworth, 452 So. 2d 921 (Fla. 1984); In re Torres, 357 N.W.2d 332 (Minn. 1984); Barber v. Superior Court, 147 Cal. App. 3d 1006, 195 Cal. Rptr. 484 (1983); In re Severns, 425 A.2d 156 (Del. Ch. 1980); Leach v. Akron Gen. Med. Ctr., 68 Ohio Misc. 1, 426 N.E.2d 809 (C.P. 1980); In re Dinnerstein, 6 Mass. App. Ct. 466, 380 N.E.2d 134 (1978); In re Quinlan, 70 N.J. 10, 355 A.2d 647, cert. denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976). See also Foody v. Manchester Mem. Hosp., _ Conn. Supp. _, 482 A.2d 713 (1984) (life sustaining treatment could be withheld from semicomatose patient described as "awake but unaware"). We stated in In re Colyer, supra at 120:

an adult who is incurably and terminally ill has a constitutional right of privacy that encompasses the right to refuse treatment that serves only to prolong the dying process, given the absence of countervailing state interests.

At page 123 we said:

A death which occurs after the removal of life sustaining systems is from natural causes, neither set in motion nor intended by the patient.

and at page 124, we stated:

A competent patient may refuse treatment under the informed consent doctrine. RCW 7.70.050. Moreover, a competent patient may ensure with a directive that life sustaining treatment will be withheld or withdrawn, should he or she subsequently become incompetent. RCW 70.122.

An incompetent's right to refuse treatment should be equal to a competent's right to do so.

Barbara Grant, although suffering from Batten's disease, had not yet degenerated into an irreversibly comatose or vegetative state at the time this matter came before the trial court. The trial court held that the motion to withhold life sustaining treatment was therefore "premature." We disagree.

We note at the outset that this State's Natural Death Act (RCW 70.122) is inapplicable. The act authorizes a competent adult to sign a directive requiring that life sustaining treatment be withheld or withdrawn should he or she suffer from a terminal and incurable condition. RCW 70.122-.030(1). As Barbara Grant was adjudicated incompetent at age 14, she was unable to avail herself of the act's provisions.

This does not end the inquiry, however, for the right to refuse life sustaining treatment is not a mere creation of statute. Rather, it stems from both the constitutional right of privacy¹ and the common law right to be free of bodily invasion. Colyer, at 119-22. As to the former, we have noted:

The decision by the incurably ill to forego medical treatment and allow the natural processes of death to follow their inevitable course is so manifestly a "fundamental" decision in their lives, that it is virtually inconceivable that the right of privacy would not apply to it.

Colyer, at 120 (quoting In re Eichner, 73 A.D.2d 431, 459, 462 N.Y.S.2d 517 (1980), modified on other grounds sub nom. In re Storar, 52 N.Y.2d 363, 420 N.E.2d 64, 438 N.Y.S.2d 266 (1981)). An incompetent individual does not lose the right to have life sustaining treatment withheld by virtue of his or her incompetency. Hamlin, at 816; Colyer, at 124. Thus, the remaining questions are whether the right to withhold life sustaining treatment extends to terminally ill but noncomatose persons such as Barbara Grant; and whether any state interests preclude the exercise of that right in this case.

Other courts have recognized that incompetent patients have the right to refuse life sustaining treatment even though they are not in a comatose or vegetative state. See, e.g., Superintendent of Belchertown State Sch. v. Saike-wicz, 373 Mass. 728, 370 N.E.2d 417 (1977) (chemotherapy treatment could be withheld from a profoundly retarded and disoriented man suffering from leukemia, where the chemotherapy would not cure his disease but merely prolong his suffering); In re Spring, 380 Mass. 629, 405 N.E.2d 115 (1980) (life prolonging but noncurative hemodialysis treatment could be withheld from conscious but profoundly senile patient suffering from kidney disease); In re Hier, 18 Mass. App. Ct. 200, 464 N.E.2d 959 (1984) (surgery necessary for insertion of a stomach feeding tube could be withheld from incompetent person suffering from delusions and severe mental illness); In re Conroy, 98 N.J. 321, 486 A.2d 1209 (1985) (right to terminate life sustaining treatment could be exercised on behalf of an incompetent person with serious and permanent mental and physical impairments and a life expectancy less than 1 year).

The American Medical Association likewise agrees that the presence of a comatose or vegetative state is not a prerequisite for the withholding of life sustaining procedures:

The social commitment of the physician is to sustain life and relieve suffering. Where the performance of one duty conflicts with the other, the choice of the patient, or his family or legal representative if the patient is incompetent to act in his own behalf, should prevail. In the absence of the patient's choice or an authorized proxy, the physician must act in the best interest of the patient.

For humane reasons, with informed consent, a physician may do what is medically necessary to alleviate severe pain, or cease or omit treatment to permit a terminally ill patient whose death is imminent to die. However, he should not intentionally cause death. In deciding whether the administration of potentially life-prolonging medical treatment is in the best interest of the patient who is incompetent to act in his own behalf, the physician should determine what the possibility is for extending life under humane and comfortable conditions and what are the prior expressed wishes of the patient and attitudes of the family or those who have responsibility for the custody of the patient.

Even if death is not imminent but a patient's coma is beyond doubt irreversible and there are adequate safeguards to confirm the accuracy of the diagnosis and with the concurrence of those who have responsibility for the care of the patient, it is not unethical to discontinue all means of life-prolonging medical treatment.

(Italics ours.) Statement of the AMA Council on Ethical and Judicial Affairs, "Withholding or Withdrawing Life Prolonging Medical Treatment", March 15, 1986. Accord, Smith, Hospital Liability § 1302[2], at 13-24 to 13-26 (1986). In earlier pronouncements, the AMA has stated that cardiopulmonary resuscitation — one form of life sustaining treatment — may be withheld "in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts.” 244 J. A.M.A. 506 (1980); 227 J. A.M.A. 864 (1974). See also D. Meyers, Medico-Legal Implications of Death and Dying § 9.6, at 203-04 (1981).

The trial court placed great weight on the fact that Barbara Grant, while terminally ill and severely impaired both physically and mentally, is apparently not in pain at the present time. The trial court evidently believed that a non-comatose individual must be suffering from pain before the right to withhold life sustaining treatment can attach. We do not agree. Certainly, the amount of pain endured by a dying patient is a significant factor to be considered, but not the only factor. The individual's right to die with dignity must not be ignored. As one court has noted, a terminally ill patient may wish to avoid not only prolonged suffering, but also "[t]he ultimate horror ... of being maintained in limbo, in a sterile room, by machines controlled by strangers." In re Torres, 357 N.W.2d 332, 340 (Minn. 1984).

We hold, therefore, that in the absence of countervailing state interests, a person has the right to have life sustaining treatment withheld where he or she (1) is in an advanced stage of a terminal and incurable illness, and (2) is suffering severe and permanent mental and physical deterioration. We have previously indicated four state interests which might militate against allowing the exercise of this right in any particular case. Those interests are: (1) the preservation of life; (2) the protection of interests of innocent third parties; (3) the prevention of suicide; and (4) the maintenance of the ethical integrity of the medical profession. In re Colyer, 99 Wn.2d 114, 122, 660 P.2d 738 (1983). None of these interests are present here.

The State's interest in preserving life may require lifesaving treatment for patients who have not consented to it being withheld. This interest weakens considerably, however, if treatment will merely postpone death for a person with a terminal and incurable condition. Where the treatment required will be highly invasive and intrusive, the terminally ill individual's right to refuse treatment (or have it withheld in his or her behalf) must prevail. Colyer, at 122-23.

The State's interest in protecting third parties is likewise not involved. Barbara Grant has no relatives or dependents who will be adversely affected by a decision to withhold life sustaining treatment. Moreover, Barbara's mother (and guardian), father, and immediate family have all concurred that such a decision would be in Barbara's best interests. Nor is the State interest in preventing suicide violated. As we have stated " [a] death which occurs after the removal of life sustaining systems is from natural causes, neither set in motion nor intended by the patient." Colyer, at 123.

Finally, the State's interest in the maintenance of the ethical integrity of the medical profession will not be adversely affected. Recent pronouncements of medical authorities recognize that the right to withhold life sustaining treatment should not be limited to patients in a comatose or vegetative state. More generally, as observed in Colyer:

[T]he prevailing ethical practice seems to be to recognize that the dying are more often in need of comfort than treatment. Recognition of the right to refuse necessary treatment in appropriate circumstances is consistent with existing medical mores; such a doctrine does not threaten either the integrity of the medical profession, the proper role of hospitals in caring for such patients or the State's interest in protecting the same. It is not necessary to deny a right of self-determination to a patient in order to recognize the interests of doctors, hospitals, and medical personnel in attendance on the patient.

Colyer, at 123 (quoting Saikewicz, at 743-44).

II

The next issue is whether the motion to withhold life sustaining treatment from Barbara Grant is "premature" because she is not presently faced with the need for such treatment. The trial court held that ''[t]he proper time to make a decision is when the case is before the doctors", and "[i]f this order were issued now, it would be analogous to prior restraint.”

We disagree. At this time, we know much about Barbara's condition. She is in the latter stages of Batten's disease, which is characterized by progressive deterioration of the brain functions that control the heart and lungs and progressive difficulty with swallowing. Her physicians all agree that she has a high likelihood of suffering either cardiac or respiratory arrest, or of altogether losing her ability to swallow. If this occurs, one or more life sustaining procedures will have to be invoked to save Barbara's life. This could include use of cardiopulmonary resuscitation, a defibrillator, a respirator, intubation for breathing, insertion of a nasogastric tube, or use of intravenous feeding. The fact that the physicians cannot now state precisely which measures will be necessary does not render the Grants' concerns purely speculative.

More importantly, the trial court's resolution of this matter would effectively deny Barbara Grant the right to withhold life sustaining procedures altogether. Certainly, in the case of cardiac or respiratory arrest, a decision on whether to resort to life sustaining procedures will have to be made immediately; there will be no time to get court authorization to withhold treatment once an emergency arises. Rainier School has stated that it will employ whatever measures necessary to save Barbara's life without such authorization. Thus, the school will treat her body by artificial means unless ordered not to do so. The result is that while purporting to delay a decision until a more appropriate time, the trial court's ruling is actually a decision by default. Barbara Grant's only right under that ruling would be to have life sustaining procedures withdrawn after they have been commenced.

Modern medical authority clearly dictates, however, that no distinction should be made between withdrawing medical treatment and prospectively withholding such treatment in the first instance. See, e.g., President's Comm'n for the Study of Ethical Problems in Medicine and Biomedical & Behavioral Research, Deciding To Forego Life-Sustaining Treatment 73-77 (1983) (hereafter Presidential Comm'n Report); D. Meyers, Medico-Legal Implications of Death and Dying § 9.6, at 200-01 (1981). Prior decisions of both this court and other courts are in accord with this view. See In re Hamlin, 102 Wn.2d 810, 689 P.2d 1372 (1984) (cardiopulmonary resuscitation could be withheld from irreversibly comatose patient); In re Dinnerstein, 6 Mass. App. Ct. 466, 380 N.E.2d 134 (1978) (cardiopulmonary and respiratory resuscitation could be withheld from patient in an essentially vegetative state and suffering from Alzheimer's disease); In re Conroy, 98 N.J. 321, 369-70, 486 (1985) (no distinction is to be made between the withholding and the withdrawing of treatment). Moreover, we note also that our Legislature, in enacting this State's Natural Death Act, has recognized the right of a competent patient to direct the "withholding or withdrawal" of life sustaining treatment should he or she suffer from a terminal and incurable condition. (Italics ours.) RCW 70.122-.030(1). It would be anomalous to deny this same right to an incompetent, terminally ill patient such as Barbara Grant.

We therefore hold that the present motion is not "premature" merely because it prospectively requests the withholding of life sustaining procedures. A person in an advanced stage of a terminal and incurable illness suffering severe and permanent mental and physical deterioration is entitled to have life sustaining treatment withheld or withdrawn.

Ill

Judith Grant has specifically requested that nasogastric tubes and intravenous feeding be withheld in the event her daughter loses the ability to swallow because of Batten's disease. We thus must determine whether the right to withhold life sustaining treatment includes the right to withhold artificial means of nutrition and hydration. The issue presented here has only recently been addressed by courts, commentators and the medical profession.

There are some who favor requiring the provision of nutrition and hydration to all patients in all circumstances. To do otherwise, it is argued, would deprive patients of the "ordinary" nursing care to which all persons are entitled. Horan & Grant, The Legal Aspects of Withdrawing Nourishment, 5 J. Legal Med. 595, 600-01 (1984); Smith, Hospital Liability § 13.03[1], at 13-32 (1986); see Comment, Artificial Nutrition and the Terminally Ill: How Should Washington Decide?, 61 Wash. L. Rev. 419, 421 (1986) (hereafter Artificial Nutrition). Food and water are basic necessities of life; indeed, they also carry tremendous emotional significance. In re Conroy, 98 N.J. 321, 372, 486 A.2d 1209 (1985); Barber v. Superior Court, 147 Cal. App. 3d 1006, 1016, 195 Cal. Rptr. 484 (1983); see Presidential Comm'n Report, at 192 n.52. Thus, in the words of one commentator, " [t]he feeding of . . . [those who] are physically unable to feed themselves, is the most fundamental of all human relationships." Callahan, On Feeding the Dying, 13 Hastings Center Rep. 22 (1983).

At the same time, however, we must recognize that nasogastric tubes and intravenous infusions are significantly different from typical human ways of providing nutrition. These procedures may be likened to the use of an artificial respirator; in each instance an artificial or mechanical device is required to prolong life because the body is unable to perform a vital bodily function on its own. Conroy, at 373; Barber, at 1016; Corbett v. D'Alessandro, 487 So. 2d 368, 371 (Fla. Dist. Ct. App. 1986). In addition, the patient is subjected to highly invasive and intrusive procedures. We have previously emphasized that the degree of bodily invasion is a significant factor to consider in determining whether life support systems may be withheld. Colyer, at 122-23. This is especially true where a terminally ill patient may well object to having his or her life prolonged through the use of tubes and forced injections.

Furthermore, advanced methods of providing nutrition and hydration, while often safe, are not without risks. These are sophisticated medical procedures whose benefits must be weighed against their burdens. Serious complications can arise from the use of nasogastric tubes and intravenous infusions. Nasogastric tubes can cause painful irritation and discomfort, bleeding, infection, and even pneumonia. Physical restraints or sedation may be required to prevent incompetent patients from pulling out their tubes. With intravenous infusion there is the danger that veins will become infected, irritated, inflamed or collapse. This is especially true if the patient must receive all of his or her nourishment intravenously. In such cases, ordinary I.V. lines are insufficient and a special catheter may have to be surgically inserted into one of the major veins of the chest. Patients receiving intravenous infusions also must often be physically restrained. Lynn & Childress, Must Patients Always Be Given Food and Water?, 13 Hastings Center Rep. 17, 18 (1983); Dresser & Boisaubin, Ethics, Law, and Nutritional Support, 145 Archives of Internal Med. 122, 122-23 (1985); Lo & Dornbrand, Sounding Board: Guiding the Hand That Feeds: Caring for the Demented Elderly, 311 New Eng. J. Med. 402, 403 (1984); Meguid, Eldar & Wahba, The Delivery of Nutritional Support: A Potpourri of New Devices and Methods, 55 Cancer 279, 280-87 (Supp. 1985); Artificial Nutrition, 61 Wash. L. Rev. at 424-26 and accompanying notes; Conroy, at 373.

The possibility that the denial of nutrition or hydration may cause pain and suffering must also, of course, be considered. In many cases provision of artificial nutrition and hydration may provide comfort to the dying. However, it is no longer clear that dehydration and malnourishment will always be distressful to a terminally ill patient. As two commentators note, "Clinicians and researchers are just beginning to explore the complex effects nourishment and even hydration can have on terminally ill patients." Dresser & Boisaubin, at 124. Patients who are near death and not receiving nourishment may, in fact, be more comfortable than comparable patients who receive conventional amounts of nutrition and hydration. See Lynn & Childress, at 19; Zerwekh, The Dehydration Question, Nursing 47, 49-51 (1983); Dresser & Boisaubin, at 124. In other cases, the pain, if any, may be reduced significantly through the use of drugs or medication. " [Presently available drugs and techniques allow pain to be reduced to a level acceptable to virtually every patient, usually without unacceptable sedation." Presidential Comm'n Report, at 50-51. Thus, several authorities now agree that in appropriate cases, artificial means of feeding may properly be withheld from terminally ill patients. Dresser & Boisaubin, at 124; Lynn & Childress, at 21; Lo & Dornbrand, at 403-04; Wanzer, et al, The Physician's Responsibility Toward Hopelessly Ill Patients, 310 New Eng. J. Med. 955, 958-59 (1984) (authors state that this applies to terminally ill patients who are "severely and irreversibly demented").

The American Medical Association reached a similar conclusion in its recent statement entitled "Withholding or Withdrawing Life Prolonging Medical Treatment":

Life-prolonging medical treatment includes medication and artificially or technologically supplied respiration, nutrition or hydration. In treating a terminally ill or irreversibly comatose patient, the physician should determine whether the benefits of treatment outweigh its burdens. At all times, the dignity of the patient should be maintained.

Statement by the AMA Council on Ethical and Judicial Affairs, March 15, 1986. Accord, Presidential Comm'n Report, at 3, 90, 288. In addition, all of the court decisions which have dealt with the issue of artificial feeding have concluded that this form of life support should be evaluated in the same manner as any other artificial means of life support. See Conroy, at 374; Brophy v. New Eng. Sinai Hosp., Inc., 398 Mass. 417, 435-38, 497 N.E.2d 626 (1986); Hier (Mass. Ct. App.), at 207-08; Corbett (Fla. Dist. Ct. App.), at 371-72; Barber (Cal. App.), at 1016-17; Bouvia v. Superior Court, 179 Cal. App. 3d 1127, 1141, 225 Cal. Rptr. 297 (1986); In re Severns, 425 A.2d 156, 160 (Del. Ch. 1980). In Delio v. Westchester Cy. Med. Ctr., 129 A.D.2d 1, 516 N.Y.S.2d 677 (1987) the court in reversing a trial court decision relied upon Conroy and Brophy as well as a number of the other decisions we have cited and concluded:

In our review of the decisions in other jurisdictions we failed to uncover a single case in which a court confronted with an application to discontinue feeding by artificial means has evaluated medical procedures to provide nutrition and hydration differently from other types of life-sustaining procedures. . . .

. . . [T]he withdrawal or withholding of feeding by artificial means should be evaluated in the same manner as any other medical procedure. In this respect, we view nutrition and hydration by artificial means as being the same as the use of a respirator or other form of life support equipment.

(Citations omitted.) Delio, 516 N.Y.S.2d at 689.²

We agree with those courts that have addressed the problem. The right to have life sustaining treatment withheld extends to all artificial procedures which serve only to prolong the life of a terminally ill patient. The many variables that may be present in any particular case militate against a rule which would require providing artificial nutrition and hydration in all cases. Rather, the burdens and benefits of providing or withholding such treatment must be evaluated by the guardian, the immediate family and the physicians according to the circumstances of each case.

We emphasize that we are not endorsing suicide or euthanasia. Some have argued that to withhold artificial nutrition and hydration from a terminally ill patient is to actively cause his or her death by starvation. Brophy, at 442 (Nolan, J., dissenting). See also Callahan, On Feeding the Dying, 13 Hastings Center Rep. 22 (1983); Siegler & Weisbard, Against the Emerging Stream: Should Fluids and Nutritional Support Be Discontinued?, 145 Archives of Internal Med. 129 (1985). This approach misconceives the plight of patients such as Barbara Grant. She is suffering from a disease which may eventually cause her to lose the ability to swallow if she has not died before the onset of that complication.³ In other words, a vital bodily function may have to be performed by artificial means — most likely, by nasogastric tube or intravenous infusion. It is much the same if she should suffer cardiac or respiratory arrest. In the former instance, a defibrillator may be required to sustain her life; in the latter instance an artificial respirator may be necessary. Yet in none of these cases can the withholding of life sustaining devices be deemed the cause of Barbara's death. The cause of her death will be Batten's disease. As stated in Colyer, at 123, " [a] death which occurs after the removal of life sustaining systems is from natural causes, neither set in motion nor intended by the patient." The fact that here, artificial feeding devices are to be withheld rather than removed, does not alter the analysis.

It is suggested that this is a problem that should be addressed by the Legislature and we do not quarrel with that suggestion. The fact remains, however, that the petitioners have addressed the problem dealing with their daughter, her rights and desires, and their circumstances to this court, not the Legislature, and we must answer an immediate problem now not an academic problem at some future date. Further we note that the courts of California, Connecticut, Delaware, Massachusetts, New Jersey, New York and Ohio have acknowledged the individual common law right of a patient to refuse medical treatment in the form of nutrition and hydration by artificial means, subject to the protection of the interest of the State by the courts. These courts have proceeded absent any legislative pronouncement on the subject in their respective states, recognizing that people have the right to accept or reject such medical treatment as they desire. The courts have recognized that termination of artificial life support systems evinces only an intent to live or die free of unwanted mechanical devices and permit the processes of nature to run their course. See Brophy, Conroy and Delio. We cannot place our responsibility to decide this case upon the legislative branch of government. We have not done so before because of emotional considerations based upon an ignorance of medical reality. In re Colyer, 99 Wn.2d 114, 660 P.2d 738 (1983); In re Hamlin, 102 Wn.2d 810, 689 P.2d 1372 (1984). The prolongation of the existence of this vegetative state for possibly years to come by artificially placing liquids and nutrients into this body to the emotional and economic destruction of the survivors is a monstrous assault to the family concerned that we will not countenance.

We hold that the right of a terminally ill patient to have life sustaining procedures withheld includes the right to withhold nasogastric tubes, intravenous feeding, and other artificial means of nutrition and hydration.

IV

As Barbara Grant has been incompetent since age 14, she necessarily could not enter a directive authorizing the withholding of life sustaining treatment under this State's Natural Death Act. The next question thus concerns the manner in which her right to refuse life sustaining treatment may be exercised. The trial court held that Judith Grant, Barbara's mother and legal guardian, was not empowered to make such treatment decisions, and therefore, the court would have to make a "substituted judgment" that Barbara would choose to refuse life sustaining treatment before such treatment could be withheld.

In two recent cases, we have considered this question as it pertains to the withdrawal of life sustaining treatment from irreversibly comatose patients. In re Colyer, 99 Wn.2d , 660 P.2d 738 (1983); In re Hamlin, 102 Wn.2d 810, 689 P.2d 1372 (1984). We stated that the judicial process is "an unresponsive and cumbersome mechanism for decisions of this nature". Colyer, at 127. We adhere to this view. We recognize that in so doing, we are declining to follow the procedures employed in Massachusetts whereby the court, through the exercise of "substituted judgment", is the ultimate arbiter of the incompetent patient's wishes or best interests with respect to the withholding and withdrawal of life sustaining treatment. See, e.g., Brophy v. New Eng. Sinai Hosp., Inc., 398 Mass. 417, 497 N.E.2d 626 (1986); In re Spring, 380 Mass. 629, 405 N.E.2d 115 (1980); Superintendent of Belchertown State Sch. v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977); In re Hier, 18 Mass. App. Ct. 200, 464 N.E.2d 959 (1984). We hold, however, that these decisions are best left, wherever possible, to the incompetent patient's guardian, immediate family and physicians.

We hold that prior court authorization to withhold life sustaining treatment shall not be required where all the following circumstances are present:

1. The incompetent patient’s attending physician, together with two other physicians qualified to assess the patient's condition, determine with reasonable medical judgment that the patient is in an advanced stage of a terminal and incurable illness and is suffering severe and permanent mental and physical deterioration;

2. The incompetent patient's legal guardian, if one has been appointed,⁴ determines that either (a) the patient, if competent, would choose to refuse life sustaining treatment; or, (b) if such a determination cannot be made, the guardian determines that the withholding of life sustaining treatment would be in the best interests of the patient;

3. No members of the incompetent patient's immediate family object to the decision to withhold such treatment;* ***⁵ and

4. Neither the patient's physicians nor the health care facility responsible for the care of the patient object to the decision to withhold such treatment.⁶

In determining whether life sustaining treatment should be withheld from an incompetent patient, the patient's guardian must first attempt to determine whether the patient would have made that same choice if competent. The guardian's familiarity with the incompetent patient's character and personality, general attitude toward medical treatment, and prior statements will assist in making this judgment. Colyer, at 131. The probative value of prior statements will vary, depending on the age and maturity of the incompetent patient, the context of the statements, and the connection of the statements to the debilitating event. Colyer, at 131-32. Where the patient has clearly expressed his or her wishes regarding the withholding of life sustaining treatment, these wishes must be given strong consideration, even if made while the patient was incompetent. See In re Ingram, 102 Wn.2d 827, 840, 689 P.2d 1363 (1984).

There will be many situations where it cannot be ascertained what choice the patient would make if competent. In such cases, the guardian must make a good faith determination of whether the withholding of life sustaining treatment would serve the incompetent patient's best interests. The following is a nonexclusive list of the factors which should be considered in making this determination:

[E]vidence 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.

Conroy, at 397 (Handler, J., concurring in part, dissenting in part).

Here, Barbara Grant's attending physician determined that she is in the advanced stages of Batten's disease, and suffering severe and permanent mental and physical deterioration; four other physicians agreed with this determination. Although Barbara has never been able to expressly indicate her desires regarding the use of life sustaining treatment, Barbara's mother has made a good faith determination that her daughter's best interests can be served only by withholding life sustaining treatment in the future. Her immediate family members agree that this is the proper and most humane decision.

A court order to withhold life sustaining treatment was necessary here, in light of Rainier School's stated policy of taking all measures necessary to sustain the life of patients under its care. We granted the order to effectuate the wishes of Barbara's legal guardian and her immediate family members. In so doing, we stress that Rainier has indicated (through its representative, the State Attorney General) that it would not object to withholding life sustaining treatment if a court order to that effect were obtained.

V

Finally, the trial court held that because Rainier School is operated by the State, and because the State was not joined as a party in this case, any decision by the court would not be binding on the State. Essentially, the trial court ruled that the State was a necessary party that must be joined under CR 19. That rule mandates joinder of a party if:

(1) in his absence complete relief cannot be accorded among those already parties, or (2) he claims an interest relating to the subject of the action and is so situated that the disposition of the action in his absence may (A) as a practical matter impair or impede his ability to protect that interest or (B) leave any of the persons already parties subject to a substantial risk of incurring . . . inconsistent obligations . . .

However, a party may waive its right to joinder, particularly if the party indicates its willingness to rely on the effort of another party who has been joined. See Smith v. State Farm Fire & Cas. Co., 633 F.2d 401, 405 (5th Cir. 1980). Here the attorney general representing Rainier School testified that the school would agree to follow the guardian's wishes if a court order were issued in favor of the guardian. Thus, there is no interest of Rainier's that will be left unprotected by a decision of this court. Joinder of the State under CR 19 was not necessary.

The advance of medical science and technology has made it possible to prolong the activity of the human body's vital functions beyond natural limits, often beyond the time when the patient is conscious and the possibility of recovery gone. The order previously entered stated:

(2) The guardian, Judith Grant, natural mother of Barbara Grant, is authorized to approve and direct the withholding of life sustaining procedures utilizing mechanical or other artificial means including cardiopulmonary resuscitation, defibrillation, the use of a respirator, intu-bation, and insertion of a naso-gastric tube, and intravenous nutrition and hydration.

That order granted the right to die naturally, peacefully and with dignity.

Pearson, C.J., and Utter and Dolliver, JJ., concur.

1 Many states have found this right as stemming from the federal constitutional right of privacy. See, e.g., Superintendent of Belchertown State Sch. v. Saikewicz, 373 Mass. 728, 739-40, 370 N.E.2d 417 (1977); Quinlan, at 38-40. We have relied on the federal constitution in our analysis, In re Colyer, 99 Wn.2d 114, 119-21, 660 P.2d 738 (1983), but we also recognized that the right to withhold life sustaining treatment stems independently from the explicit privacy guaranty in article 1, section 7 of our State Constitution. Colyer, at 120.

2 The opinion includes the following:

"Father Andrew Varga, a Jesuit priest and a professor of philosophy at Ford-ham University, testified as an expert on the ethical issues involved in the discontinuance of life-sustaining mechanisms in the event the patient lapsed into an irreversible vegetative condition. Father Varga testified that a Vatican document published in 1980 rejected the distinction between ordinary and extraordinary means of life support as a measure of when it would be ethical to discontinue those means of support; rather, the Vatican adopted a test of proportionality under which the measure of whether to discontinue life-sustaining mechanisms was whether those mechanisms would provide benefits to the patient greater than the burdens imposed on the patient, the family and others as a result. Father Varga testified that the discontinuance of nutrition and hydration presently furnished to Daniel by artificial means would be ethical and in accordance with Vatican doctrine since Daniel's condition is irreversible and maintaining him in his present condition places an enormous burden upon his family both economically and emotionally." Delio, 516 N.Y.S.2d at 683.

3 Such was the plight of the patient in Delio v. Westchester Cy. Med. Ctr., supra. The patient could not swallow because of the complete degeneration of the cortical cells but yet might be kept in a persistent vegetative state for many years. The court pointed out that the prolongation of a vegetative state, by any means, when the body cannot perform a vital bodily function on its own, endeavoring to distinguish mechanical breathing from mechanical hydration or nutrition, is a distinction without difference.

4 The authority of the guardian to withhold or withdraw life sustaining treatment stems from RCW 11.92.040(3). Colyer, at 128; Hamlin, at 814-15. In Hamlin, at 818-19, we specifically noted that a guardian need not be appointed to make the decision to withhold life sustaining treatment if the incompetent patient's immediate family members all agree that such treatment should be withheld. Our holding today does not overrule this aspect of Hamlin in any way. We merely recognize that in some cases, a guardian will already have been appointed. (Here, Judith Grant, Barbara's mother, has also been her legal guardian since 1978.) In such cases, prior court authorization is not required where the guardian, immediate family members, physicians and the health care facility responsible for the care of the patient all agree as to the propriety of withholding life sustaining treatment.

5 Where no guardian has been appointed, the patient's immediate family shall make the decision on whether to withhold life sustaining treatment by applying the criteria in 2 above.

6 No health care provider should be required to participate in the withholding or withdrawing of life sustaining treatment if such an action or actions would be contrary to the dictates of their conscience or belief. On the other hand, no health care provider should interfere with the transfer of a patient to another health care provider if the guardian, immediate family and physician so direct.