Being right does not make a decision morally correct.
The patient, a 98 year old man was suffering from a dissecting aortic aneurysm of 7.5 cm. He was unresponsive and near death. He previously, and with unquestioned capacity, executed an advance health directive indicating that he refused surgery. He also had previously told his physician that he would rather die than to face the probable mental and physical damage and quality of life deterioration that would accompany such damage.
Without question, principles of clinical bioethics would demand respect for the patient’s wishes and directives. In this instance, the patient’s spouse nevertheless demanded that surgery be performed. All other family members agreed with the decision to go forward with the surgery, notwithstanding the significant risk.
The hospital’s anesthesiologists initially refused to participate in the surgery, stating that such an operation had never been performed on someone his age and in his condition, and also noted that patient had refused the surgery.
Nevertheless, the patient's clearly stated wishes and health care directives were ignored, disregarded and disrespected. Strong paternalism replaced the patient’s dignity and autonomy.
The surgeons proceeded despite the dangers, because, they said: “We were doing what we thought was right.”
Was it Right?
1. The patient’s written “advanced” health directive declined resuscitation and, specifically, surgery for what he knew and understood to be a dissecting aortic aneurysm.
2. The patient’s verbal instructions were to not do the surgery. The patient clearly knew the risks of the surgery. He knew of the high risk of respiratory failure, renal failure and brain damage. He declined to undertake these risks and refused treatment.
3. The ethics committee under pressure from the patient’s spouse, acquiesced, but without any stated basis for their decision. Texas law requires a statement.
This case is a clear example of the failure to follow principles of clinical bioethics – a return to strong paternalism – and the disregard for a patient’s wishes.
This case was reported in the New York Times. The patient was Dr Michael DeBakey, internationally renowned surgical pioneer, who died on July 11, 2008, two months shy of his 100th birthday.
Should the fact that he was an internationally renowned surgical pioneer matter in deciding whether to ignore his instructions? If anything, it underscores his knowledge of the risks of such surgery.
His wife and family demanded the surgery be performed.
Should we ignore a patient’s clear instructions because he was in some way seen as “more deserving” of the surgery?
Or should we. as a matter of respect for this man, carry out his wishes?
The outcome of the surgery should not matter to our adherence to bioethical principles. It might however, matter to other patients and families to know that he survived for one year with good quality of life. It may serve as a fictitious beacon of hope and result in unnecessary suffering.
Ignoring the legal obligations and bioethical mandate to follow the autonomous decisions of the patient may cause unnecessary problems between surrogate decision makers and physicians and hospitals.
It may also result in claims of civil liability for the unnecessary and prolonged suffering and costs of medical care – the same risks the patient did not want to undertake.
Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.
His directive was not inconsistent with customary practice in the medical community. So, what was the motivation behind his physicians’ and his wife’s demand that the ethics committee, support going forward with surgery without the patient’s consent?
The patient’s physicians enjoyed a long professional and personal relationship with Dr. DeBakey. They wanted him to receive the benefit of the surgery that he had pioneered and which benefited so many patients across the country. Indeed, it does seem a great injustice for him not to receive that benefit.
Yet, his physicians’ decisions did not honor him. We do not honor someone by ignoring his or her clearly stated wishes.
Yes, Dr DeBakey was happy to be alive and functioning well after the surgery and meticulous care. His physicians I am sure, celebrated their success.
Yet, it is important to ask, if presented with a similar medical dilemma, with the same array of risks and benefits, would Dr. DeBakey have elected to go forward with the surgery? I think not. He didn’t like the odds the first time and would not want to take that bet a second time any more than he did the first.
Dr. DeBakey’s physicians chose to take that bet on his behalf even though he clearly refused to do so. They felt that their assessment was better and more important than his. They took the risk with his life and they won that bet for him.
Failure of the Ethics Committee
The larger failure here lies with the Ethics Committee of Methodist Hospital System. Their duty was to inform this patient’s physicians and other interested parties, of the bioethical issues that were presented by this dilemma, and to explain their thoughtful application of these principles. They should have, and were obligated to have, provided a written recommendation and their reasoning and justification for supporting or not supporting the proposed surgery.
In fact, Texas law requires that a report must be issued. The law also requires that the report be made a part of the patient’s record. Thus, the Ethics Committee report should have been made part of the Dr DeBakey’s medical record:
Texas Health & Safety Code, Chapter 166. Advance Directives
§ 166.046. PROCEDURE IF NOT EFFECTUATING A DIRECTIVE OR
TREATMENT DECISION. (a) If an attending physician refuses to honor a patient's advance directive... the physician's refusal shall be reviewed by an ethics or medical committee. (c) The written explanation must be included in the patient's medical record.
Instead, no written report was issued. According the New York Times report: “The majority ruled in a consensus without a formal vote. No minutes were kept.”
The Ethics Committee ran from their responsibilities and kept their meeting and determinations and discussions secret. There was no formal vote. No minutes were kept, and so, in essence, the Ethics Committee never, officially, met. There was no transparency to this momentous, life and death, decision.
The Ethics Committee at Methodist Hospital System acted with cowardice, which is defined as failing to act in the face of great difficulty and opposition. Instead, all of the ethical issues and principles, the hours spent in comprehensive educational studies, and years of experience by the members of the committee ,were worthless. Instead of fulfilling their role, the Committee silently acquiesced, and the reason for having a medical Ethics Committee in the first place, was thwarted.
We must keep in mind that ethics committees are not intended to be a substitute for the best judgment of a physician. The opinions of physicians are not subjugated to ethics committees.
The Hospital Ethics Committee’s role is to inform the decision making process by providing an intelligent and well thought out review of the bioethical issues and applicable ethical principals and legal mandates that must be taken into consideration. Instead, the Ethics Committee of Methodist Hospital System backed away from the task. They could not ethically or legally justify ignoring the patient’s clearly stated directives. Dr DeBakey’s wife insisted, and his physicians wanted, that surgery should be performed.
This case is an illustration of conflict of interest, family confusion and anger and the need for forthright and consistent application of clinical bioethics experience for the benefit of all patients.
Dr. DeBakey had the “fundamental right,” no different than his right of freedom of speech or his freedom of religion, to determine what treatment he would choose to receive or reject. By issuing a written health directive, and repeating that directive to his physician, he also chose to exercise his fundamental right to receive or reject surgery.
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