The futility of prolonging life and the benefit to patients

In case you have not heard about it, there is a very gut wrenching court case St Louis Park, MN.   A doctor in the hospital system is going to court to replace a patient’s wife, Lana Barnes, with a substitute decision maker, claiming that she is making futile and reckless decisions to prolong her near-vegetative husband’s  life.

He has severe dementia, is PEG’d and vented and as we see all too often, has zero chance of any meaningful recovery.   Yet Mrs. Barnes claims he is going to get better if the doctors just treated his normal pressure hydrocephalus.   The decisions she has made, despite numerous recommendations to palliate him, go to the contrary.   She evidently refuses to allow them to just make him comfortable, and instead continue aggressive, futile care.  In fact, several years ago the court had to intervene to force her to follow the recommendations of doctors to put poor Mr. Barnes in a nursing home.  Now, they are settling in for round two.

I see this sort of thing all the time – however, usually, over time, most sane people can be convinced of the futility of prolonging life in these cases.  Just the other day I had a morbidly obese, stroked out, bedridden woman covered with decubes, on dialysis, PEG’d and trached with virtually no response to painful stimuli.   She remains full code but I am hopeful the doctors and staff can convince the family that it is time to stop this nonsense.  Sad to say but even in cases where the family can’t be convinced, the patient usually dies before it gets to the point where the courts have to intervene.   When they go into cardiac arrest, a “slow or one-finger code” is performed.

Of course, this sort of thing rings of  Sarah Palin’s “Death Panels” – the court playing the role of the Evil Government that wants to snuff Grandpa. However, I would contend that in certain cases such as this, the court needs to step in to prevent a delusional person from making terrible decisions for their loved one.   And you know what, I don’t care what your cultural or religious convictions are when it gets to this point.  If a whole host of MD’s, social workers, and other health care providers all feel that prolonging life is tortuous to the person, withdrawal of care should happen.  If we can’t convince the decision maker of this, we have to go over their heads for the benefit of the patient. I’m not even going to get into the monumental costs that are incurred in situations like this.

“ER Stories” is an emergency physician who blogs at his self-titled site, ER Stories.

Submit a guest post and be heard on social media’s leading physician voice.

Comments are moderated before they are published. Please read the comment policy.

  • http://www.sufficientscruples.com Kevin T. Keith

    I understand your concerns about these futile cases, and I think much of what you say is right, but some aspects of your presentation of the issue raise flags for me.

    In your discussion of unrealistic family demands, you do not say whether the patients in these cases had an advance directive or other expression of their wishes for treatment under the given circumstances. Standard principles of clinical ethics ground decision-making in these cases on the patient’s own desires; caregivers are bound by the patient’s directions, and when explicit directions are not applicable, proxy decisionmakers are expected to act as the patient themselves would have done. Only when no reliable information at all is available about what the patient would have wanted can someone else’s estimate of the patient’s best interests be taken as decisive.

    If it is known, even on reasonable belief from prior statements that were not written down, that the patients did in fact want aggressive treatment in these cases, then in requesting that treatment the families are acting as the patients would have done, which, it is generally agreed, is the right thing to do. This does not mean that care cannot be terminated in truly futile cases, but you have to make a strong argument on the basis of competing priorities; “it’s best for the patient” is not a sound argument if it is known that the patient themselves did not agree.

    Now, it may be the case that in your examples there was no clear indication that the patient wanted aggressive treatment in a hopeless situation, and the families really were reacting emotionally without taking the patients’ true interests into account. But that is a question of fact that must be carefully established before what “a whole host of MD’s, social workers, and other health care providers all feel” can be substituted for what the patient’s otherwise-valid proxy believes they know about that patient themselves.

    I’m afraid your article implies that “doctor knows best”, and that proxy decisions must meet the test of agreeing with what the healthcare team “feels” is right or they can be overridden. That is just what some elements of the public are worried about, and it undermines the advances made by the patient-autonomy movement over the past 40 years.

    Even more startling is this: “When they go into cardiac arrest, a ‘slow or one-finger code’ is performed.” The “slow-code” (pretending to perform a code, as per direction for a given patient, but deliberately allowing the patient to die) is an old and recognized hospital practice, and one that is universally condemned. It is dishonest: it involves a pretense of following treatment orders while deliberately sabotaging them; it requires falsely charting a standard intervention that was in fact intentionally performed ineffectively; it inevitably requires telling the family a false story about an active intervention that was actually intended to result in the patient’s death. It is intentionally poor clinical care: it is the application of clinical skills and techniques that are deliberately designed to fail; it is the use of clinical resources and practices to create a false impression of effective care while deliberately seeking a different outcome. It is morally deceptive: it is a pretense of adhering to the patient’s desires or the established treatment orders, while deliberately acting against those instructions and then lying about it; it is the unacknowledged substitution of third-party values or goals for the patient’s own preferences. Termination of futile treatment is a perfectly reasonable procedure when it is driven by necessity (scarcity of resources) or by the patient’s own desires; the deceptive and deliberate act of allowing a patient to die, against their wishes, while pretending to do otherwise, and then covering it up, is something else entirely.

    Again, I understand the concerns you express about futility and unreasonable expectations. But I think a great deal of caution is still needed in invalidating proxy decisionmakers solely on the grounds that we don’t approve of their decisions. And the “slow-code”, as a means of deceptively undermining those decisions without authority to bring about a patient’s death, is best left among the by-gone horrors of medical history.

    • Jack

      Thanks,

      You just made a straight forward decision into a Supreme Court case. And we wonder why healthcare cost is out of control.

      I agree there are a few minor issues that needs to be cleaned up but futile care is just that FUTILE. If you want it, you can pay for it yourself.

      • http://www.sufficientscruples.com Kevin T. Keith

        There’s really no need for a court case, just 2 simple rules:

        (1) Don’t subjugate patient’s values to your own beliefs about what their interests should be; and

        (2) Don’t perform deliberately ineffective care to intentionally kill a patient and then lie about it.

        That really doesn’t seem that hard to me. It also happens to be the law, and a pretty much universal consensus in medical ethics.

        If you want to institute a policy of terminating clinically futile care for financial reasons, say so, do it openly, and develop a clear and above-board policy that also allows patients to pursue other options if they want to. Don’t just deceive or badger patients to get what what *you* want.

        • Jack

          There is NO TERMINATING life here.

          Just withdrawing life support. If this patient cannot survive without support then there’s no reason to keep him/her alive artificially. Unless support is temporary and recovery is expected.

          You want us to not impose our beliefs on to other but you are allowing others to impose their beliefs onto rest of our society. Can’t have it both ways.

          I do not want to deceive the patient. It’s simple to me. You will bear the cost if you like to continue “futile” care. Rest of the society shouldn’t have to.

          • http://www.sufficientscruples.com Kevin T. Keith

            “If this patient cannot survive without support then there’s no reason to keep him/her alive artificially. Unless support is temporary and recovery is expected.”

            Wow.

            Only people who can live entirely free of support deserve healthcare? There’s “no reason” to provide life support to people who want to go on living with it?

            Wow.

            “You want us to not impose our beliefs on to other but you are allowing others to impose their beliefs onto rest of our society.”

            What does this even mean? How is being asked to provide healthcare to people who want it and perceive it as a benefit “imposing their beliefs on the rest of society”? Nobody else is affected by the fact that some patients live on life support – but unilaterally withdrawing that life support from patients who want it affects them dramatically (i.e., fatally). There is not even the remotest similarity.

            If you’re talking about costs, note that not all life-support care is unremunerated. As to how far society should pick up the tab for those who cannot pay for life-support care through private means, that is a worthwhile policy issue, but it has nothing to do with whether those patients’ desires for that care are reasonable, and it cannot be resolved by having doctors just shut down care unilaterally for those particular cases in which they disapprove of the patients’ goals.

        • Jack

          What it meant to say was “life support”. If you withdrawal “life support” and patient cannot survive then you need to consider withdrawn care.

          This patient’s wife is imposing her belief or will upon rest of the society to pay and care for her husband even though it appears agreed that medically the patient has zero meaningful recovery. How is she not forcing her belief upon us all?

  • Doc99

    “Soylent Green … is People!”

  • http://nostrums.blogspot.com Doc D

    I can’t argue convincingly against anything you say, but I’m very wary of “going over their heads.” I think people own their bodies and should have the freedom to make bad choices (you know the old saying). It’s cases like this where the individual has a proxy decision-maker that get sticky.

    But isn’t this case an outlier? You said most of the time family members can be “convinced of the futuility.” Isn’t this a part of the treatment of the patient, to give the family the best recommendation and information so they can see the futility?

    Whenever the law steps in, all the special interests and political machinery turn what should be a private grief into a circus…feelings get hurt and just as much money gets wasted.

  • MartyMaraschino

    I believe the man in this story did have an advance directive which the wife did not inform the hospitals about, presumably because she did not agree with it. He died before any court could have a final judgement in this case.

  • Melinda

    It could have also been that she depended on his Soc Sec check to live.

  • Eye Rick

    This can not be the “Admiral” from my Med Internship from 1993 can it?

  • soloFP

    Part of the difficulty, besides the high emotions at the end of life, relies on futile “free” care. One patient can cost $100,000 or more in 4-5 days in the ICU with multiple codes and 7-8 specialists, lots of testing/studies, yet the ones with Medicare or supplemental insurance do not directly have to pay toward the care. A way to fix the situation would be to have an independent ethics group decide if the care is futile or not. Once the care was deemed futile, the patient and patient’s family would have to pay for the care.

    • http://onhealthtech.blogspot.com/ Margalit Gur-Arie

      I wouldn’t want to sit on that independent ethic group…
      What is the definition of futile?

  • http://www.erstories.net ERP

    I am not sure if the patient had a directive – and if he did not, that’s too bad. Because then his fate was totally controlled by his wife – who clearly had unrealistic expectations.
    Hence another reason to spell out your wishes.

  • Marc Gorayeb, MD

    We all know that this type of case is an outlier. It must not be used to drive health poilcy.

    • Jack

      This occurs more frequent than you would think.

      Most doctors or hospitals don’t want to take on the situation because of potential backlash and law suits even though in our hearts of hearts we actually know what is best for the patient.

  • http://www.editage.com Medical Editing

    This is a never ending debate. The doctor does know the situation in & out but its not easy for the family to let go of their loved one. As i said, a never ending discussion.

  • http://Www.twitter.com/alicearobertson Alice

    How do you know the wife is not “sane”? Maybe she took a vow to love in sickness and in health? That does not make her insane.

    And it was the outcry against the independent commissions that had the wording removed…not a fantasy of conservatives.

    Your summation, and intent in your writing opens a Pandora’s Box of emotions and eradication of individual rights that will lead the way to the very panels you scoff at.

  • http://www.twitter.com/alicearobertson Alice

    It seems with or without the healthcare bill rationing is here. What a struggle….quality of life……doctors oathed to save lives……money….ideologies followed through to temporal concepts that prevent suffering on one level and cause it on another. Every answer to “the problem” hurts someone via quality (or lack of) of care, to budgetary, to availability, etc. With “single payer” at the heart of much of the debate this is insightful.

    I wanted to add these facts to this discussion. I follow a lawyer and bioethicist Wesley Smith and a few months ago he added this to the conversation:
    CBS’s HealthWatch opined:

    There is a certain irony here. During last year’s federal battle over President Obama’s health care legislation, some Republicans claimed his program promoted “death panels” which they seemed to suggest would involve government bureaucrats deciding who lives and who dies. The health care bill did include language which paid doctors to offer end-of-life counseling. That was eventually removed. Facing a tough budget situation, however, Arizona has instituted what critics say is much closer to these so-called “death panels” than anything that ever appeared in the federal government’s health care legislation.

    Similarly, New York Times liberal columnist Gail Collins raged:

    Republicans kept ranting about how “Obamacare” would put the federal government between you and your doctor and try to save money by prohibiting said doctor from using the best treatments and procedures. All this came to mind when I was talking to Flor Felix, whose husband, Francisco, a 32-year-old truck driver with four kids, was denied a liver transplant because the Arizona Legislature had yanked funds for it out of a state Medicaid program.

    But these and other similar columns and editorials miss the point: The Arizona Medicaid story was not grounded in conservative heartlessness or hypocrisy. It resulted from a single-payer health care system crashing into a budgetary brick wall. The real lesson here is that “single payer” and “death panels” go together like “See’s” and “candy.”