Last summer, we received news about a local guardianship case. It’s the kind of case that deserves greater attention than it got at the time. This particular case was handled by Equip for Equality (EFE), the Illinois organization that is part of the national, congressionally-mandated Protection & Advocacy Network.
This is an important case – it shows us just how badly the power of a guardian can be abused and what it takes to get that guardian’s decision overturned.
Darrell, a man with mental illness living in a nursing home, was experiencing liver failure as a result of his long-term use of psychotropic medications. To maintain his health, he needed dialysis three times a week at the local hospital. When it was discovered that he also had late-stage cancer, his father, who was Darrell’s guardian but rarely visited his son, decided to terminate the dialysis and let his son die. Darrell, however, was aware of his situation and asked to continue treatment. A social worker acquainted with the case contacted Equip for Equality to seek help in protecting Darrell’s right for continued dialysis. She told Equip for Equality that Darrell would die quickly if he lost his treatment and action needed to be taken promptly.
Equip for Equality spoke to Darrell, who specifically requested dialysis and indicated why he needed and wanted it. Within a day, Equip for Equality prepared a Petition for Temporary Restraining Order (TRO) and affidavits, and arranged for witnesses to be present for the hearing. The next day, the court entered a TRO requiring the guardian to comply with Darrell’s wishes and allow the dialysis.
The hospital, however, was reluctant to abide by the order because the attorney believed that the hospital, which was located in Indiana, was outside the jurisdiction of the Illinois court. Equip for Equality persuaded the attorney that the hospital was indeed bound by the order under the Full Faith and Credit Clause of the U.S. Constitution, and the hospital soon relented to the order and administered the dialysis.
Darrell lived for nine more days. His mother, who had maintained close contact with her son for decades, related to Equip for Equality that Darrell’s last days were spent with her and his siblings and that the extra days obtained through Equip for Equality’s efforts brought the family precious time, peace and closure. (Copyright © 2001–2007 Equip for Equality. All Rights Reserved.)
The successful intervention in the case of Darrell is no cause for comfort, since it raises troubling questions. What would have happened to Darrell without the call from the social worker? What would have happened if no one at EFE was available to take the case on short notice? How many people under guardianship have had similar decisions made for them, but had no one to plead for legal advocacy on their behalf? (We don’t assume that all social workers would respond in the way that the one in Darrell’s facility did) How was a guardian even able to order stopping a life-saving measure for an individual who clearly stated that he wanted it?
We don’t have the answers to these questions, but we had concerns about these issues several years ago. During the Robert Wendland case, changes in the California probate code had broadened the powers of conservators. The statutory change was the basis for the argument put forth by Robert Wendland’s wife in her efforts to get his feeding tube removed in the absence of either an advance directive or a durable power of attorney. Wendland was what is now labelled as a “minimally conscious state.”
While section 2355 is written with sufficient breadth to cover all health care decisions, the Legislature cannot have intended to authorize every conceivable application without meaningful judicial review. Taken to its literal extremes, the statute would permit a conservator to withdraw health care necessary to life from any conservatee who had been adjudicated incompetent to make health care decisions, regardless of the degree of mental and physical impairment, and on no greater showing than that the conservator in good faith considered treatment not to be in the conservatee’s best interest. The result would be to permit a conservator freely to end a conservatee’s life based on the conservator’s subjective assessment, albeit “in good faith [and]based on medical advice” (§ 2355, subd. (a)), that the conservatee enjoys an unacceptable quality of life. We find no reason to believe the Legislature intended section 2355 to confer power so unlimited and no authority for such a result in any judicial decision. Under these circumstances, we may properly construe the statute to require proof by clear and convincing evidence to avoid grave injury to the fundamental rights of conscious but incompetent conservatees. (p.45)
Rose Wendland’s petition, based on the broad interpretation of the statute changes, was supported by 43 bioethicists. Evidently, they thought the expansion of the powers of conservators was a good thing.
It’s probable that there are similar problems in many states. The statutory changes in California occurred as the result of advocacy on the part of well-funded groups who targeted these laws — and kept disability organizations away from the table when they did so. We fear that Darrell’s case may be the tip of a very large iceberg – and the stories hiding beneath the surface don’t have many happy endings.