Pushing Back Against Futility: Rejecting "Professional Autonomy" as a Justification
The drive to instill Futile Care Theory is back in high gear after a bit of a respite. But here's a pleasant surprise: One Eric Gampel, a bioethicist from California State University, Chico, pushes back against the concept of imposing "professional autonomy" in the futile care controversy in the journal Bioethics (no link). From the abstract:
Despite substantial controversy, the use of futility judgments in medicine is quite common, and has been backed by the implementation of hospital policies and professional guidelines on medical futility.He's right. And for those who disagree, if "professional autonomy" applies, then there are no grounds for opposing the so-called "conscience laws" that would permit physicians to refuse to prescribe birth control and pharmacists to dispense Plan B day after pills.
The controversy arises when health care professionals (HCPs) consider a treatment futile which patients or families believe to be worthwhile: should HCPs be free to refuse treatments in such a case, or be required to provide them? Most physicians seem convinced that professional autonomy protects them from being forced to provide treatments they judge medically futile, given the lack of patient benefit as well as the waste of medical resources involved.
The argument from professional autonomy has been presented in a number of articles, but it has not been subjected to much critical scrutiny. In this paper I distinguish three versions of the argument:
1) that each physician should be free to exercise his or her own medical judgment; 2) that the medical profession as a whole may provide futility standards to govern the practice of its members; and 3) that the moral integrity of each physician serves as a limit to treatment demands.
I maintain that none of these versions succeeds in overcoming the standard objection that futility determinations involve value judgments best left to the patients, their designated surrogates, or their families. Nor do resource considerations change this fact, since they should not influence the properly patient centered judgment about futility.
Gampel is fighting against medical paternalism coming full circle. In the bad old days, doctor autonomy forced patients to remain on machines they did not want. Today, futilitarians want to decide that patients whose lives they don't think worth living can't have the treatment even if they want it.
Futile Care Theory is really about denying human exceptionalism by imposing utilitarian bioethical moral values upon all of us.
(I have the article for those who wish it.)
Labels: Futile Care Theory. Professional Autonomy. Conscience Clauses
posted by Wesley J. Smith @ 10:09 AM
14 Comments
14 Comments:
Wesley, I'm with you on just about everything you say, but this is an area where some caution is warranted. The slippery slope here of forcing doctors to do treatments they feel are immoral will lead to all kinds of other problems. The most obvious to me is the push to force doctors to do abortions or force pharmacists to dispense the morning-after pill or abortefacents. Going further, one could imagine that it could have negative affects even in the aspects of elder care down the road if assisted-suicide became more common where it could be mandated that doctors administer those drugs against their will.
Requiring doctors to give treatment they find immoral is the wrong way to go.
The area where we should be pushing back is areas of group decisions like #2 in your list of 3 versions of the argument. While I think it is appropriate to respect individual physicians' autonomny, particularly because we have the right to find another doctor who is more to our liking, we don't have to stand for professional organizations, hospitals and HMO or other non-individuals making/imposing moral decisions as a group.
Moral decisions are best left to individuals even if the individual is a misguided doctor.
Hi Ken, and thanks for stopping by.
I have been warning those who support conscience clauses that they had better be careful in how they frame their proposals or they will throw the futile care patients under the bus. And we can't permit doctors to abandon patients. They are professionals and have higher duties than merely carrying out their own views.
I have proposed that the distinction that can be drawn is between elective and non elective procedures. Hence, since a patient on life support is in a non elective situation if they wish to live, that should not be unilaterally withdrawn. If the physician disagrees, then the patient should be asked to find another doctor with treatment maintained.
Similarly, I don't think a doctor can refuse an ectopic abortion, which is what excising an embryo that implants in a fallopian tube is.
On the other hand, if a procedure is elective, it would seem to me that doctors probably should be able to excercise professional autonomy within reasonable limits, assuming that the patient's life will not be threatened and/or physical health threatened.
And we can't just let "autonomy" to be the only value. Otherwise, doctors could perform amputations on healthy limbs based on patients request who have Body Integrity Identity Disorder ("amputee wannabe).
The keys are equality and sanctity of human life, always treating the patient as a person, and not doing harm.
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Wesley: An important (and long-winded) point about medical futility and in response to Gampel's article.
1. Like pornography, just because futility defies a consensus definition doesn't mean that it doesn't exist or can't be identified on a case-by-case basis. An illustrative case… A 94-year-old woman is in the ICU with end-stage COPD and in renal failure. She has been transferred from her nursing home to the hospital on five separate occasions over the past three months and her current stay is now on day 15. She has lived with Alzheimer’s disease for 15+ years and has been both completely bed-bound and feeding tube-dependent for the past five years. In addition to a persistent pneumonia that has not responded to antibiotic therapy, she is also has a massively infected stage-IV decubitus (bedsore) near her right hip that is deep enough to fit one’s fist into; almost to the bone. She has failed multiple weaning attempts and is deeply obtunded (barely responsive to painful stimuli only) despite being off all sedation. A neurological exam shows evidence of a stroke, possibly two. Her respiration is shallow, rapid and occasionally gasping, even though she in on a ventilator. She has been struggling in this state for four days and the physicians, feeling that her death is both immanent and being needlessly protracted on the respirator, want to withdrawal the ventilator and IV’s and allow her to expire peacefully. They meet with the patient’s son (who is also her medical POA) and explain that his mom is critically ill, has suffered extensive brain damage, & there are no curative therapies-interventions that offer any hope at this point. Though this patient could die at any time, it is equally likely that she could also potentially survive in her current obtunded state for another 2-3 weeks if she stays on the ventilator. The son insists that the doctors continue to “do everything” because discontinuing life support would be the same thing as murder. The medical staff feel they have been ‘flogging’ this poor woman’s body for the past 9 days and that to continue treatment with no goal other than physiologic preservation is tantamount to elder abuse. The son also insists that his mother remain a full code because to deny her resuscitation is passive euthanasia. The patient remains on the ventilator for another six days. Her decubitus eventually turns black and gangrenous. Her heart stops and her last 20 minutes of life consists of an unsuccessful resuscitation attempt that fractures five ribs in the process. Her son is not present to witness her death.
This kind of case occurs on a daily basis in hospitals all over America. Most well-meaning physicians and nurses are not looking to apply any ‘one-size-fits-all’ futility solution. Indeed, most hospitals don’t even have futility policies & fewer still enjoy any statutory basis to support them if they did. They are simply trying to do the best thing for their patient, trying to protect their patient from harm, trying to spare their patient from a long & seemingly meaningless protracted dying process justified only on patently non-medical grounds by a family member who insists that this is the only acceptable course of action. Are you arguing, Wesley, that clinicians are to be obligated in these cases to provide this type of treatment (I cannot call it “care”) because it is “non-elective.” Further, do you think that continuing to provide such aggressive medical treatment in these situations is somehow a “value-free” judgment - & that it reflects professionally responsible behavior?
You state that autonomy cannot be the only value in play in these situations and that the “sanctity of human life, always treating the patient as a person, and not doing harm” are also salient considerations. How do you propose that providers balance these often competing principles in a case like this, and if they are not allowed to invoke some concept of futility, what would you suggest they invoke instead as their guiding principle? The question of what consitutes a "good death" must be addressed by those on both sides of the current (and unfortunate) ideological fence, and whatever definition you land upon, it's credibility rises and falls on its applicability to individual cases.
And I have to ask again the question that you have ignored to date in multiple posts: if patients or family members have an unqualified right to demand any/all medical treatment at the end of life regardless of prognosis or potential effectiveness, why don’t they enjoy this same right in non end-of-life scenarios as well? If a treatment is deemed “elective,” then it is somehow okay for a physician to adhere to an established standard of care, but they must abandon this standard whenever a patient’s life is in immediate jeopardy? I don't still don't understand you logical justification for this distinction.
In the battle of ideas and ideologies between lawyers like yourself and largely academic-based bioethicists, a lot of innocent patients and informative cases are overlooked in the crossfire. If you want to know why many clinicians and hospital-based ethicists dismiss much of what you say, it is not because they are mindless 'futilitarians' but rather because your ideologically reflexive assessments of these cases belie your lack of being 'in the trenches' -- therefore a lack of attention to the very real and critically important differences that are encountered from case to case. You make reasonable arguments about the potential (and sometimes real) abuses of futility as an indiscriminate and non-transparent practice (with insufficient oversight and inattention to substantive due process) but you take little moral responsibility for the horrific consequences of your general life-support-on-demand approach; an approach that is the norm rather than the exception in most acute care facilities across America. I don’t mean any disrespect by this; like I’ve said before, I am one of thos evil liberal bioethicists (though hospital-based) that you excoriate on a regular basis who has read much of your stuff and finds many points of agreement. Just trying calling it like I see it. We need less prophetic warnings and more concrete solutions. THe current situation is not being remedied by the increasingly crystalized positions from either side.
-Oka
O: Yes, well sometimes those in the trenches don't have the best view.
I don't call anyone who disagrees with me evil.
I think you are wrong in your analyses because you have, if I may, relativized the worth and importance of human life.
Futility is dangerous because supporters think their values should trump those of patient or family, even if expressed in an advance directive. And the snobbery I have seen, denigrating disagreeing family members for "being religious," or "feeling guilty," or my favorite, "not being objective," when what they want to do is honor their lived ones' lives and their loved ones' values.
Often, I would agree that treatment should be stopped. I WOULD AGREE. But why should my values rule over those of family members when the reason treatment is to be stopped is not because it doesn't work but because it does? These aren't medical judgments. They are value judgments. And they don't belong to doctors or to you, or to me.
Finally, I am sometimes in the trenches, in a hospital, dealing with the hard impact of death as it is about to happen, is happening, or has just happened. This isn't part of my public work. It is part of my human work.
The persistent problem in your position, Wesley, is that you continue to largely ignore the pressing issues of the real cases (like the one I presented) and the need for actual decisions in real time.
As to your statement: "But why should my values rule over those of family members when the reason treatment is to be stopped is not because it doesn't work but because it does? These aren't medical judgments. They are value judgments. And they don't belong to doctors or to you, or to me."
This paragraph contains two dangerous assumptions. One is that keeping a dying body on life support for as long as possible is always better than allowing the body to expire naturally and no damage is ever incurred in this process. The second disturbing and slightly hypocritical conclusion is that society (including doctors and health care facilities) has no right or responsibility to interject its "values" in the provate lives of other citizens (no matter how vulnerable), even if it is to protect these citizens. For example, in the case I recounted, your opinion is that is was immoral and inappropriate for that woman's providers to want to protect her from the horrific and absolutely ineffective & inappropriate resuscitation attempt she endured before her death. The docs simply do have no right to want to protect such patients, period.
Once again, you appear to subscribe to a puzzling form of exceptionalism that somehow 'kicks in' at the end of life but not before. I would imagine that you don't oppose entities like Child or Adult Protective Services whose mission is PRECISELY to enforce a communal set of values different than those 'values' of abusive, neglectful, or exploitive families. Yet, when it comes to futile life-sustaining technologies and clearly inchoate treatment plans, these decisions can NEVER inflict harm to the helpless patient and cannot be challenged? In other words, this is the inviolable realm of private, piestistic beleifs where communal values don't apply or belong? The only appropriate parties that can question or challenge should be other family members? (Your apparant stance on the Schiavo case - that the parents objected. Though I find it hard to believe that you and other groups would NOT have intervened if the Schindlers all of sudden relented and agreed to withdraw treatment) This constitutes a curious and poorly justified form of abandonment. The moral door swings both ways, Wesley.
O: You are wrong on both counts. First, I have written, and wrote in that piece, that if the desired treatment would truly be torture to the point that it would be an actual harm to the patient, rather than one perceived by the reigning institutional paradigm, the place for that--as in the case under discussion--is open court, not behind closed doors in bioethics committee meetings. Light of day! Burden of proof on those who want to stop treatment by clear and convincing evidence. Also, the deep pocket hospital should pay since otherwise patient families would have to choose between protecting life and bankruptcy.
Second, it is extremely dangerous to redefine medicine away from its ultimate purpose which is to save life, to merely to protect a quality of life. If someone doesn't want the treatment, fine. I believe in that. Education is the key to the best choices in this regard. But it is not up to YOU to tell OTHERS that their continued living is a harm. That quickly descends into discrimination, either real or potential.
1. "...the place for that--as in the case under discussion--is open court, not behind closed doors in bioethics committee meetings. Light of day! Burden of proof on those who want to stop treatment by clear and convincing evidence. Also, the deep pocket hospital should pay since otherwise patient families would have to choose between protecting life and bankruptcy."
I largely agree with this point but beleive that in most emergent eon-of-life disputes, the court system is usually too slow to respond in a timely manner. Rather prefer to see a community-based mediation model which, if properly designed, could increase provider transparancy and patient safety.
2. "Second, it is extremely dangerous to redefine medicine away from its ultimate purpose which is to save life, to merely to protect a quality of life."
Medicine broadly conceived should do both. Any move toward privliging the latter at the expense of the former should be carefully examined at the least, if not fully resisted -- again, no rationing without transparant community debate and agreement. We are in agreement. And given that we are, in the words of of Leon Kass, "on the threshold of the first-ever mass geriatric society," how we value the lives of our very old says everything about the moral fiber of our society as a whole.
3. "But it is not up to YOU to tell OTHERS that their continued living is a harm. That quickly descends into discrimination, either real or potential."
Amen. As a hospital-based ethicist, my job is to make sure the relevant parties involved in the contested care of a patient are involved in meaningful, ongoing dialogue to clarify miscommunication and to collaborate on a treatment plan that is personally, ethically and professionally acceptable to all parties. Of course, the guiding principle in the overwhelming majority of these cases should be(and is, in my experience) the known or presumed wishes of the patient herself.
That said, it is vital that care porviders feel they have both a voice and a forum to express concern for any patient that they feel may be subject to harm, whether intentional or unintentional. But if a hospital's mechanism for this - the clinical ethic committee - becomes reflexively hostage to a "reigning institutional paradigm" based on discharge timetables, reimbursement variables, or even provider frustration, then it becomes a potential danger to patients and their loved ones alike. I am deeply committed to not letting this happen on my watch, and at least on this particular point, I greatly appreciate and am in full agreement with your analysis and warnings.
yikes - apologize for the many typos--distracted by the Olympics!
O; Re typos: Been there, done that. No apology necessary.
Yes, both purposes are important, but we shouldn't feel the need to eschew one for the other.
I am very supportive of ethics committees in the mediation model. I just oppose them being given quasi-judicial decision making powers.
So, let's have that beer.
Definitely.
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WS: " am very supportive of ethics committees in the mediation model. I just oppose them being given quasi-judicial decision making powers."
I think it's going to take a partnership of critics to advance past the existing model. This is an opportunity for lawyers with expertise in this area to push the development of this mechanism through statutory proposals and-or by lobbying various professional medical associations. Safety could be substantially increased for both patients and providers alike with a consistent & transparant mechanism to mediate end-of-life disputes in a timely and informed manner.
Very supportive of this though of course I wonder where the funding and rules & regs would come from; perhaps the latter via an ABA task force. Funding? That's another issue - whole lotta hospitals bleeding red ink these days...
I hope I'm around long enough to see something like this piloted, and any such venture would benefit greatly from a bi-partisan approach.
BRAVO!!! to SHS for "Sometimes those in the trenches don't have the best view."!!!
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