The natural parents of a profoundly mentally disabled 50 year old man recently were denied the authority to make end of life decisions for him. The parents were court appointed as “plenary guardians” of their son because he was so severely mentally impaired from birth that he could not communicate at all or make any decisions.
When the disabled son became seriously ill with pneumonia after he swallowed a hairpin, he was transferred from the residential facility where he had lived for 45 years to a nearby hospital. Physicians determined that he needed a mechanical ventilator to enable him to breathe properly. His parents decided that mechanical ventilation was not in his best interests and tried to refuse the treatment. The physicians disregarded the parents’ preferences because they had not been appointed as “health care agents” for their son.
Request to Expand Guardianship Powers
The parents went to court to expand their guardian status to include powers to act as health care agents for their son. By the time of the hearing, their son was recovering from the pneumonia and was no longer dependent on the ventilator. The parents argued that, as plenary guardians, they had the right to exercise all of their son’s legal rights, including his right to refuse medical treatment. They claimed that a person incapacitated from birth is entitled to refuse medical treatment, but has no power to do so unless he or she can exercise that right through a guardian.
The Department of Public Welfare opposed the parents’ request and claimed that guardians cannot make choices that do not advance the interests of an incapacitated person. Since the son was not terminally ill or in a persistent vegetative state, medical treatment, including mechanical ventilation, was in his best interests, according to the Department.
The Department also argued that, in 2006, the Pennsylvania legislature passed the Health Care Agents and Representatives Act, clarifying and updating Pennsylvania law on medical treatment choices, including end of life decision making. The Act provides that everyone has a right to make decisions regarding their own health care, including the right to appoint an agent or representative. The Act has specific rules for the appointment of an agent, and the son obviously had never made any such appointment.
Guardians Have Limited Decision Making Authority
The court first decided that the Act does not permit a guardian to assert an incapacitated individual’s right to appoint a health care agent. In fact, the court observed, a separate statute relating to guardians specifically limits guardians from many categories of decisions. Guardians may not consent to certain medical procedures, including abortions, sterilization, and psychosurgery. Guardians also cannot admit an incapacitated person to a psychiatric institution. Guardians cannot prohibit marriage, consent to divorce, or agree to the termination of parental rights on behalf of an incapacitated person.
The court also noted that, unlike properly appointed health care agents, a guardian is the court’s “bailiff or agent in protecting an incompetent and his estate.” Guardians are always under the court’s control and are subject to the court’s direction. Guardians are permitted to act against the express wishes of the incompetent person, but always must follow the guidance of the court.
By contrast, a health care agent must follow the directives of the individual who appointed him, and he or she is usually given broad powers. Health care agents do not require any supervision from the courts. A health care agent literally stands in the shoes of the individual who appointed the agent, and is charged with doing the will of the individual.
In concluding that guardians should not be given the broad powers granted to many health care agents, the court noted that guardians can “potentially abuse their authority to an unparalleled magnitude.” Because courts are obliged to supervise guardians and cannot efficiently intervene in time to preserve the life of an incapacitated person if a guardian makes an end of life decision, the court found that guardians should not be given such extensive authority.
Guardians who believe it is best to refuse medical treatment for their incapacitated person must petition the court to hear the matter, and they must prove by clear and convincing evidence that their health care preference is best for the incapacitated person. If approved by the court, an incapacitated person’s right to refuse medical treatment can be asserted.
Properly appointed health care agents can exercise all of the powers in the appointing document without seeking any approval of the courts. If you do not have a living will or an advanced medical directive appointing a health care agent, you should. You and your family, as well as any physicians, are best served if you make important decisions now and identify an agent. If you are a guardian of an incapacitated person, your ability to control health care decisions is limited by the fact that the ultimate decisions must be made by a judge.