Developmentally Disabled Man Dies Before Court Decides His Fate

AUGUST 16, 1999 VOLUME 7, NUMBER 7

Though once viewed as slightly out of the mainstream of American thought, the “right-to-die” movement has become widely accepted today. Few would argue with the notion that a competent patient has the right to refuse life-sustaining treatment, even when the medical community collectively believes that the treatment should continue. Just this week, Rochester, New York, resident Bill White ordered that his ventilator be disconnected after 32 years; though officials were initially uncertain how to respond, after a quick legal review Mr. White was permitted to make the decision for himself. He died last Friday.

Mr. White was mentally competent at the time he made his decision. A more difficult question arises where the patient is not currently competent, but left an advance directive (a living will, or a health care power of attorney). Interpreting the directive, and trying to determine what the patient would have wanted in the present circumstance, can present legal, ethical and emotional challenges.

More difficult still is the dilemma posed by the patient who never was competent to express his or her wishes. In the case of a patient who has been developmentally disabled since birth, for example, should the fact of that disability compel a decision to aggressively treat every illness? Is it ever permissible to disconnect life-sustaining treatment from the never-competent patient? If so, how should the decision be made?

These are the questions that faced officials in the case of Matthew Woods. The 54-year-old Kentucky resident had a tested IQ of 71, and had resided in state facilities since age 18. His parents were deceased, and his two closest relatives were a brother and sister; his brother was not closely involved in his care and his sister resided in a Kentucky nursing home.

Mr. Woods was asthmatic, and was on his way to treatment at the University of Kentucky when he suffered a cardiopulmonary arrest in April, 1995. He suffered irreversible brain damage, and was in a permanently unconscious state, residing in another hospital.

Mr. Woods had never been able to tell anyone how he would want to be treated, and family was not available to help make the decision. Did that mean that he must be kept alive as long as possible on a mechanical ventilator?

The Kentucky court considering that question decided that it was permissible to withdraw the ventilator support, and Mr. Woods’ court-appointed guardian ad litem appealed. Ironically, Mr. Woods died (of “natural causes”) while the appeal was pending, but the Kentucky Court of Appeals nonetheless rendered its decision, finding that a guardian has the power to withdraw life-sustaining treatment even in the absence of any indication of the ward/patient’s actual wishes. Woods v. Commonwealth, July 30, 1999. The opinion was later withdrawn when the Kentucky Supreme Court accepted jurisdiction of the appeal. (Editor’s Note: the Kentucky Supreme Court did not rule until August, 2004. See Elder Law Issues for September 13, 2004, for an update.)

Arizona courts would reach the same result. In fact, the Kentucky case relies heavily on the logic of the leading Arizona case on this question, that of Tucsonan Mildred Rasmussen. Ms. Rasmussen was not developmentally disabled, but had never given any indication of her wishes regarding treatment. When she later was diagnosed as being in a persistent vegetative state, her guardian was authorized to withdraw the artificial tube feedings that kept her alive. Just as in the case of Matthew Woods, the final irony was that Mildred Rasmussen died while courts were still considering her legal fate.

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