Withholding Life Sustaining Treatment: Letting the Conscious Non-Terminal, Incompetent, Patient Die: Hold On a Minute - Not So Fast - Part I

 

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.

 

Clinical Bioethics: Betancourt v Trinitas - Appellate Court Decision

 

The New Jersey Superior Court–Appellate Division dismissed the appeal in Betancourt v Trinitas finding the appeal moot. The court stressed it's concern over the  “sparse record” presented at the time of  the original hearing in the trial court as well as on appeal and found that the evidence was not “conclusive in several areas necessary to fully adjudicate the substantial issues raised.” This is sometimes referred to as insufficiency of evidence. If the person or entity bringing the case does not provide sufficient evidence the court will dismiss the claim. In this case Tinitas Hospital's request to withdraw the ventilator.

 Ruben Betancourt, 72 years old, was unconscious following the dislodging of a ventilator breathing tube after surgery at Trinitas Medical Center, which resulted in anoxic encephalopathy. He was readmitted to Trinitas in July 2008 with a diagnosis of renal failure. He received dialysis treatments, remained on a ventilator, and feeding tube. The physicians at Trinitas diagnosed Mr. Betancourt as being in a persistent vegetative state and told the family of their intention to stop dialysis and allow him to die.

 “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”

The Superior Court in New Jersey (trial court) held a two day hearing and thereafter enjoined the hospital from withdrawing life support without the consent of Betancourt's daughter, Jacqueline, who was appointed his guardian. Mr. Betancourt remained at Trinitas, on the ventilator, receiving dialysis and on a feeding tube until his death in May 2009. The case nevertheless went forward because the attorneys argued that this dilemma is a common occurrence and needs to be clarified by the court.

What this court clarified is that insufficient evidence was presented to consider the issues of withdrawing life-sustaining treatment.  As I pointed out in my previous post: 

            “… the physicians caring for this patient are required to place before the surrogate all medical evidence.

1.        CT and MRI scans,

2.        EEGs,

3.        All respiratory records and any potential to wean him from the ventilator. 

4.        Does he have a tracheostomy?

5.        Are his serious bed sores being tended to or ignored?

6.        What infectious disease is he suffering from?

7.        Is he responding to antibiotics?

8.        To what degree was his brain damaged due to anoxic encephalopathy?

9.        Has the physicians and or hospital discussed the events leading up to the hypoxic event, or hid from it because of concern of liability.

10.      Has all evidence been preserved, provided to the surrogate

11.       Has the ethics committee reviewed the case? If so where is their written report, findings and recommendations?

12.       Have bioethicists and or lawyers participated in conferences with  surrogate?

13.           ETC.

The surrogate cannot perform the job of a surrogate in the dark. This is where detailed records of the conversations and meeting held with the surrogate, family and physicians and reports from the ethics committees are critical to the surrogate’s understanding the issues in order to make a legitimate decision.”

"The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

Attorneys representing the hospital chose not to bring necessary evidence. Attorneys pick and choose what evidence they wish to disclose as favorable to their client’s position. We can only surmise that the evidence not produced was not favorable. It is often said that bad facts make bad law. A case of great importance to so many must be decided on clear findings of fact.

“…the judge concluded that Ruben was unconscious and in a persistent vegetative state. As it was not necessary to the decision that he reached, the judge made no specific findings, however, concerning Rubin's ability to perceive pain or react to his surroundings. The uncertainty and lack of true consensus as to Rubin's condition may generate a result that will not only apply to a patient in a non-cognitive, vegetative state, but to a patient who is impaired and in possession of some level of awareness.”

The absence in evidence of the usual procedures when an impasse is reached between physicians and patients is to call for help – from consulting bioethicists and ethics committees who will bring to bear physicians of various specialties, lawyers, lay people and clergy from the community. The surrogate decision maker would then have the benefit of views - and the reasons therefore – to consider facts outside any adversarial proceeding.

There was no indication that this review or participation of the bioethics consultant, or even be ethics committee, was involved in the attempt to resolve the dispute between the patient's surrogate and be patient's physician.

Thus, the attorneys representing the hospital did not give to the trial court sufficient facts to make a decision to the grant the withholding of life-sustaining treatment to Mr. Betancourt. .  As the court said in the opinion in this case: “We do not decide the issue but raise it to emphasize why the “thin” and disputed record is so critical to a full analysis.”