Futility of Treatments: Should an Ethics Committee Decide?
On May 14 2010 the Practical Bioethics Blog had an issue posted by Rosemary Flannigan asking the question “Ethics Committee as Decision Makers?” She wrote:
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”
I wrote back the following response:
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.
So there it is: In this case what was important was to understand how the word “futile or futility” was used. Then to be sure that the word was used appropriately. If futility deals with the ineffectiveness of a treatment to sustain a life and the treatment is ineffective then it is futile. If futility deals with quality of life of the patient, it is essential to remember that it is up to the patient to have expressed what quality of life the patient would have wanted. If the patient never confided with anyone, someone who has lived with the patient and knows the patients likes and dislikes may help all come to a conclusion about the patient’s definition of “quality”. If that quality will be absent despite the treatment then the treatment is futile. And then what one does with a prognosis of futility..well, that should be the decision of the doctors with the patient or patient’s surrogate. But not one of an ethics committee. ..Maurice.
posted by Maurice Bernstein, M.D. @ 9:05:00 PM
3 comments
3 Comments:
I think the other point, which may or may not be implicit in the blog, is that we use Medical Ethics to navigate the gray areas. Though I see this treatment as unquestionably futile, reasonable individuals (such as the daughter) may feel it necessary to receive care which will prolong the father's life.
I think we are playing a dangerous game if there is an independent committee deciding what is futile and what is not. We would be saying each case has a 'correct' and 'incorrect' intervention (or lack thereof), and in doing so strip much of the humanism out of medicine.
If futility deals with the ineffectiveness of a treatment to sustain a life and the treatment is ineffective then it is futile. If futility deals with quality of life of the patient, it is essential to remember that it is up to the patient to have expressed what quality of life the patient would have wanted. That is what the term futility is all about. It is the responsibility of a committee such as an ethics committee to educate the parties regarding the definition of futility and it is then up to the parties to arrive at their own decision. In the absence of the patient, the parties must present proof that their use of the terms "futile" or "not futile" are appropriate to the case and then make a decision based on the facts and some understanding or assumption of what the patient would have wanted but it is not a committee who should decide on the action to be taken. Yes, the parties may use the committee as a resource but not as the final arbiter. ..Maurice.
The word futile seems to be used less frequently than it used to be. I agree with Disraeli who famously said "I hate definitions"
In the situation that is portrayed here, if the word "futility" is mentioned then people will attempt to define it and unfortuantely this draws us away from discussions about the real issues at hand. As already indicated in discussion so far, different people will have different perceptions and definitions of what futility is.
What has not been emphasised so far is the ethical perspective of the health professionals providing the care to this unfortunate person. They have an ethical right to not be involved in the care of this person. Their obligation thereafter is to ensure that a duty of care is transferred to someone else. It may be difficult, or indeed impossible to get other people to fulfill this obligation and the current health care worker will find themselves in a situation that remains uncomfortable.
This obviously does not provide a solution to the problem, but the obligations of truth telling are fulfilled
In a system where open disclosure is extant, this will be known by the daughter and might provide a platform for further discussion about what healthcare it is "reasonable " to provide for her father.
In situations like this, people's attitudes may well change with time. At least an approach articulated above provides a rational explanation of what some or all of her father's carers may feel about the situation that they find themselves in.
If discussion is maintained in a truthful, professional manner then with time; the daughter's advocacy for what seems to some to be excessive, may change.
Finally, if one were to defer to an ethics committee to be the ultimate arbiter of such a decision to curtail active treatment, then this would indeed be turning the clock back half a century. The advice from a clinical ethics committee should always be just advice.
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