Ethics Committees as Decision Makers?
Rosemary FlaniganMay 14, 2010
In New Jersey we have the case of the 73 year old man in a persistent vegetative state for nearly a year, hooked up to a ventilator, dialysis machine and feeding tube because the patient’s daughter did not agree to the futility conclusion reached by the medical staff and who sued—and won—when the hospital placed a “do not resuscitate” sign on his bed and halted dialysis.
Oh, we are getting good at endorsing family’s determination about “extraordinary” means—but we are not so good when family won’t agree to our clinical conclusions.
So a group of physicians and “bioethics experts” in New Jersey are advocating “for an independent ethics committee to help resolve end-of-life disputes between families and hospitals.”
WHOA!! Aren’t we jumping the gun here? Aren’t ethics committees designed to help OTHERS make good decisions? Haven’t we long held the conviction that “ethics committees are not decision-makers”? I see the need for help here, but let’s call it BY ANOTHER NAME.
Agree? Disagree? I’m all ears!!!
Link: New Jersey needs independent panel to resolve disputes over end-of-life care, Editorial, New Jersey Star-Ledger, May 12, 2010
Labels: ethics committees; medical ethics; end of life; advance directives
posted by Practical Bioethics at
10:52 AM
5 Comments:
First, ethics committees ALREADY DO NOW make decisions. And that is probably a good thing. But what is troublesome is that the ECs to which DECISION-MAKING AUTHORITY has been delegated are simply not ready to exercise that power.
This was the topic of my presentation this morning at the ICCEC. http://medicalfutility.blogspot.com/2010/05/time-to-regulate-healthcare-ethics.html
And I will make similar points (though very differently framed) tomorrow afternoon at the American Thoracic Society.
During my tenure on a bioethics committee we carefully stipulated that we did not make "decisions" regarding end-of-life care, but rather offered consultation and recommendations. The difference may seem minor to some, but it was significant to us. In my modest opinion, patients/families and treating physicians should still make the difficult decisions necessary. Ethics committees serve best in an advisory capacity. This allows patients, families, and providers alike the freedom to consult them without fear, and primarily to ensure that a full and thorough review is completed. While some bioethics committees appear to have moved into more authoritarian territory, I believe it to be to the detriment of the overall ethical endeavor. Somehow the phrase "ethics committee" and "decisional dictum" just don't seem to go together. I agree with Dr. Flanigan. Authoritative decision-making committees should be called "by another name" -- mediation, dispute resolution, or arbitration committees come quickly to mind.
-- JT McKay, PhD
It's all a matter of who's "futility". What is the definition of futility which is being used by the various parties who are alive and contemplating? From the context of physiologic futility, if that is the basis for the physician's and hospital's definition they are fully mistaken. The ventilator, dialysis and feeding tube was, in fact, keeping the patient alive and with that definition the treatments were certainly not futile. Ah! but if the physicians and hospital were basing their decision on quality of life, the conclusion of futility of the treatments could be appropriate---but only if this was the quality of life that the patient DIDN'T want or to be maintained. But who would know what the patient really wanted? Why, of course, it might be the daughter..if she had engaged her father in a discussion of his desires about life if he was ever incapacitated. He may have told her that he didn't want to be kept alive but forever unconscious and not able to participate in life. The daughter says that the treatment is not futile but does that represent her own view or the view of the father? If it is her own personal conclusion it is not what should be considered since if she is acting as a surrogate for her father. It must be her father's view of what he wanted as a quality of life that she should be disclosing. Even if he never talked to her about quality of life, if he was a robust and active man as she might describe him, one might assume that he would want to return to some reasonable degree of awareness and participation in life. Based on the length of debility and the systemic chronic complications this will likely not happen. Would he have wanted his body functions, color, temperature and heart beat to be maintained indefinitely for the benefit of his family? If the daughter knows that this would be what her father wanted, then she was speaking for her father by denying futility. But I would doubt it. The role of the ethics committee in all this? Well, it would be simply to explain everything I wrote above to all the stakeholders: family, physicians and hospital. Unfortunately, the patient would be one stakeholder which will not be informed. Once this is done, it is up to the stakeholders to come to a decision. At that point, the ethics committee in their classic role, can either agree or disagree with the parties and make their view known. The ethics committee will make no final decision, should not make any final decision that will be acted upon. The decision is up to the stakeholders with the daughter speaking for her father. No other named or unnamed committee is necessary. ..Maurice.
The Betancourt case is sad. For single judge to override the assessment and decision made by a group trained with experienced doctors on the bays of a family member's request does not help the patient, the family or anyone. The family member was not willing to accept a simple reality - that medical expertise has limitations. If she wanted miracles, she needed to go somewhere else.
The futility disputes that involve removal of life support systems result from the family's denial of simple realities of limits of medical capability. In the other types of futility disputes, there maybe exceptions and some patients show short term improvement. These "miracles" are statistical quirks and many patients suffer before one has a small degree of improvement.
There is a strong need to have a body of uninvolved, knowledgeable people who can look at the issues directly make decision based based on facts and not emotional or personality issues. Such a body would save patients unnecessary discomfort, the family would have less guilt (it is well known that many family members ask for "everything" to be done out of a feeling of guilt) and reduce the stress on health care providers who do not like to give treatments that do not help the patient.
I strongly support the creation of a body that would have the authority to override the family's wishes and allow doctors to remove equipment, stop drugs, etc. as considered fit to provide maximum patient comfort.
Unfortunately, there are a few groups in the country who, for their won reasons, claim that doctors' goal is to not treat patients even when there are treatments available. My attempts to have dialogues with them, to understand their point of view, have been rejected.
I hope N.J. and N.M. develop bodies that will help reduce burdensome treatments.
This funny because you talk about ethics... nobody fucking cares now, you really think that doctors cares about people, nobody cares about nobody, it's just about money and politics position, the damn sad world would be the same forever.
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