Guardianship of Grant, In re

• Decision Date: 10 December 1987
• Docket Number: No. 52609-5,52609-5
• Citation: 747 P.2d 445,109 Wn.2d 545
• Parties: , 56 USLW 2341 In re the GUARDIANSHIP OF Barbara GRANT, An incompetent Person.
• Court: Washington Supreme Court

Page 545

109 Wn.2d 545

747 P.2d 445, 56 USLW 2341

In re the GUARDIANSHIP OF Barbara GRANT, An incompetent Person.

No. 52609-5.

Supreme Court of Washington En Banc.

Dec. 10, 1987.

Note: Also See 757 P.2d 534. Cathy Blinka, Lonnie G. Davis, Tacoma, for appellant.

Hugh M. Robinson, Puyallup, for respondent.

CALLOW, Justice.

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, defibrilation, the use of a respirator, intubation, 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 1 1/2 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...