Mark Murphy, Legal Director of the Disability Rights Network of Pennsylvania (DRN), emailed a summary of an important Superior Court decision that lays out a very stringent set of criteria that have to be met in order for a guardian to order refusal of treatment for an incapacitated person who isn’t at the end stage of a serious illness or permanently unconscious. The summary is available at this link, but is reproduced below, with permission.
Set forth below is a summary of an important new decision by the Pennsylvania Superior Court regarding whether, and under what circumstances, a guardian has the authority to refuse treatment for an incapacitated person who does not have an end-stage medical condition or is permanently unconscious. In brief, the court held as follows:
1. A court order that appoints a person as a plenary guardian does not authorize that person to refuse life-sustaining treatment for incapacitated persons who do not have end-stage medical conditions or who are not permanently unconscious. In other words, a guardianship order by itself does not authorize the guardian to make such a decision.
2. A guardian must secure a special court order to allow him to refuse life-sustaining treatment for an incapacitated person who does not have an end-stage medical condition or who is not permanently unconscious. The guardian has an “extraordinary burden” to prove by clear and convincing evidence that death would be in the incapacitated person’s best interests, i.e., that extending life would be inhumane under the circumstances. The guardian must present specific medical evidence about the incapacitated person’s diagnosis, prognosis, pain, etc. and, if at all possible, evidence concerning the incapacitated person’s wishes either prior to or during the treatment. The individual’s cognitive disability should generally not be considered.
In sum, this decision will make it extremely difficult, if not impossible, for a guardian to secure an order that would allow him to refuse life-sustaining treatment when an incapacitated person does not have an end-stage medical condition or is not permanently unconscious.
SUMMARY
D.L.H., an individual with mental retardation and a resident of Ebensburg Center, was admitted to the hospital with aspiration pneumonia. At the time, he did not have any terminal illness and was not in a permanent vegetative state. At the hospital, the doctors determined that he needed a ventilator to assist him to breathe. His parents, who had previously been appointed as his plenary guardians, objected and sought to decline treatment. The hospital refused to obey the guardians’ direction and placed D.L.H. on a ventilator. He used the ventilator for three weeks, at which time the pneumonia subsided to the point where it was no longer required and he could breathe on his own.
Prior to his recovery, the parents filed a petition that sought permission to refuse treatment, arguing that they should have the same powers to refuse treatment as a “health care agent” designated by a competent individual under an advance health care directive under Act 2006-169 (Act 169). DPW objected to the petition. The trial court refused the guardians’ petition, and they appealed to Superior Court.
On appeal, the Superior Court initially decided that, although the case was technically moot since D.L.H had improved enough that the ventilator was not necessary, it raised an issue that was capable of repetition yet evading review and presented important public policy questions. Accordingly, the court decided to address the merits.
Initially, the Court rejected the guardians’ assertion that their status as plenary guardians was itself sufficient to give them authority to refuse any treatment for D.L.H. The Court compared the guardianship statute to Act 169’s provisions regarding health care agents, noting that the former has nothing specific concerning when a guardian can make the type of decisions requested in this case while the latter expressly authorizes health care agents to refuse medical treatment if that is consistent with the instructions in a health care advance directive. The Court also distinguished guardians from agents under common law, finding that agents are subject to the power of the principal and are obligated to carry out the principal’s expressed wishes. In contrast, guardians act as officers of the court and are subject to the court’s control. Moreover, while guardians are charged with acting in the best interests of the individual, they are not required to honor their wards’ stated wishes. The Court further noted that guardianship creates an opportunity for abuse and that allowing guardians – merely based on their appointment as plenary guardians – to refuse life-sustaining treatment would be problematic because any judicial review would come too late. Accordingly, the Court held that the Legislature vested authority only in health care agents appointed under advance health care directives to object to life sustaining medical procedures when the principal does not have an end-stage medical condition or is not permanently unconscious and that the Legislature did not vest similar authority in guardians – even plenary guardians.
The Court also rejected the guardians’ alternative argument that, under the facts of the case, the trial court should have granted their petition to authorize them to refuse treatment on behalf of D.L.H. The Court assumed (without deciding) that a court could grant a guardian authority to decline medical treatment for someone who does not have an end-stage medical condition or is not permanently unconscious. However, the Court noted that such a decision would be even more compelling that sterilization, which also requires court approval before a guardian can authorize the procedure. Accordingly, the Court held that guardians who seek to decline life-sustaining treatment must petition the court and prove by clear and convincing evidence that refusing such treatment (i.e., causing the incapacitated person’s death) would be in the incapacitated person’s best interest.
The Court discussed at length the type of proof that would be required. The Court emphasized that the guardian in such a petition would have an “ extraordinary burden” to prove that death is in the best interest of the incapacitated person. In making the decision, a court must “consider only the best interest of the incompetent – not the interest or convenience of the parents, guardians or society in general.” “[A]t minimum,” the guardian “must provide reliable medical expert testimony documenting the incompetent’s severe, permanent medical condition (or severe, permanent medical condition with progressive features) and current state of physical/psychological deterioration and pain.” It would also be “wise (although not absolutely necessary depending on the severity of the medical condition) for a guardian to adduce additional evidence of the incompetent’s expressions, either through demeanor or conduct, which could reasonably be interpreted as evincing the incompetent’s wants, needs, and/or feelings during the course of medical treatment.”
In the absence of any evidence of an incompetent’s expressions during or prior to treatment, the quality of the medical evidence should be of such a character that a court is definitively convinced that the benefits of prolonging life, as a result of medical treatment, is markedly outweighed by the incurable nature of the incompetent’s medical condition and the consistent, recurring degree of pain. That is, based upon medical facts, diagnosis and prognosis of the particular case, a court should be able to conclude, without hesitation, that extending life would amount to an inhumane act that runs so contrary to basic notations of fundamental decency that death furthers the best interest of the incompetent. (citation omitted) Otherwise, in assessing the benefits of a prolonged life, a court should not place any emphasis on the fact that a life-long incompetent, prior to receiving medical treatment, suffers from a mental disability or other cognitive deficiency, because this is the incompetent’s natural state of being.
(citation omitted). A court may, however, consider the incompetent’s cognitive abilities as a starting point to analyze whether the current medical condition or proposed medical treatment has resulted, or would result, in a reduction in those abilities.The Court, however, concluded that D.L.H.’s guardians failed to present any evidence that the refusal of mechanical ventilation would further D.L.H.’s best interests. They did not provide evidence that the aspiration pneumonia was a severe, permanent medical condition, that he suffered a remarkable amount of pain due to the ventilator, that he expressed any objection to the ventilator treatment, or that he ever expressed any intent to decline life preserving medical treatment through a written document or clear oral declaration.
Given that he recovered within three weeks, “the evidence was clearly inadequate” to show that refusing the treatment was in D.L.H.’s best interests.
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Full court decision (in pdf format) can be found here.
Thanks for Judy Gran of the Public Interest Law Center of Philadelphia (PILCOP) for sharing this news with me and many others outside of Pennsylvania. –Stephen Drake