It is an injustice to cause patients to unnecessarily prolong the process of dying. Actual futile care must be avoided. But it is equally an injustice to easily acquiesce to patient’s demands that my result in unnecessary death.
On August 17, 2010 the Supreme Court of Pennsylvania decided a case involving a non-terminal, profoundly mentally retarded patient. The patient was conscious and non-terminal. David is 53 years old. David’s parents were the guardians.
His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. The hospital refused. After several weeks his condition improved and he was successfully weaned from the vent.
David was diagnosed as having aspiration pneumonia and was put on a mechanical ventilator. His parents argued that putting him on the ventilator was not in his best interest and requested terminal extubation. David’s physicians and hospital properly refused to follow these demands. After several weeks his condition improved and he was weaned from the ventilator.
Notwithstanding arguments that this case is moot, the court went ahead and rendered an opinion The Pennsylvania Supreme Court was asked to review the case to clarify the statutory scheme regarding the right of individuals to make their own decisions and to clarify the procedures for decision-making when a patient is incompetent.
The applicable statute required all things “… necessary to preserve life shall be provided to an individual who has neither an end-stage medical condition nor is permanently unconscious”
An attorney was assigned to David who argued that a Guardian’s decision-making abilities should be consistent with the medical recommendations where the life of an incapacitated person is at stake.
What, we must ask, was the basis for the parent’s demands. What is it that was not in his best interest? It was not their fear that he would be forced to remain on the vent permanently which would cause him anxiety and confusion, because he was responding to treatment for his pneumonia and was weaned off the vent in a few weeks. He would, as presumably they were told, return to his normal base line. If this was the case, the reason for withdrawing the vent early would have been a decision to to end his life (kill him) notwithstanding his improving condition.
The level of proof required to justify terminal extubation as being in the patient’s best interest is the legal standard of clear and convincing evidence.
The trial court determined that there was no clear and convincing evidence to justify terminal extubation. The hospital argued that life preserving medical care must be provided and, no consent from a third party is required. Nor must any objection by a guardian or surrogate decision maker be honored.
The Supreme Court of Pennsylvania made clear that there is a public policy to preserve life in circumstances of a non-terminal conscious patient.
Moreover, the court noted that in this instance David never had the ability to appoint a surrogate decision-maker in situations where he did not suffer from an end-stage condition or permanent unconsciousness and his parents were precluded from making a decision to end his life unless there was clear and convincing evidence that he was in end stage disease or permanently unconscious.
Even in the situation of a conscious cognitively able patient we must appreciate that a request to withhold life sustaining treatment in a patient with a non terminal condition, still requires a showing of clear and convincing evidence that the patient has the capacity to make such a decision.
We should allow some time to pass, have a psychiatric consult; neurologic consult to evaluate any potential underlying injury or insult that might affect the decision-making capacity.
As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s or surrogate’s demand may result in unnecessary death.
Many patients with mental illness may have capacity to make medical decisions for themselves and many normal cognitively functioning patients may not have capacity. We should not refuse an autonomous decision by a patient, yet we cannot blindly accept a decision by a patient who could return to a reasonable quality of life if treated for a short time.
Physicians must be free to fully evaluate the patient without fear of liability for “refusing” the patient’s demands. As a patient’s condition improves and the risk of death is diminished the greater the need for a more paternalistic plan of approach when the patient’s demand may result in unnecessary death. In this instance the medical record should reflect that the physicians are not refusing the patient’s demands, but first, fully evaluating the patient’s condition before the demands can be accepted. Involvement of bioethics consults and ethics committees will help to protect both the patient from harm and physicians and hospital from claims of liability.