The futility debate has had its day, hasn’t it? At its height between during the 1980’s and late 1990’s there were hundreds of publications on the subject, but a NEJM ‘sounding board’ article by Helft et al, ‘The rise and fall of the futility movement‘ appeared to bring it to a natural end. The authors explored definitions, data, the importance of patients’ autonomy versus physicians’ autonomy, and attempts to resolve disputes. They described how there had been,
…an attempt to convince society that physicians could use their clinical judgment or epidemiologic skills to determine whether a particular treatment would be futile in a particular clinical situation.
In their conclusion, where the authors sought to explain why interest in the idea of futility had dwindled, they pointed out that the medical community,
…could not agree on underlying principles…there was no consensus on a specific definition of futility or on an empirical basis for deciding that further care would be futile. Those who argued that the critical issue was autonomy could not agree on whether patients or physicians should have the final say.
Doctor-centric exercises in calculation appeared at odds with the need to take into account the views of patients or their representatives. The right decision always depends on communication and a mutual understanding of burdens and benefits, so purely objective estimates of futility appeared bound to fail. The paper ends with,
The judgment that further treatment would be futile is not a conclusion – a signal that care should cease; instead, it should initiate the difficult task of discussing the situation with the patient…Talking to patients and their families should remain the focus of our efforts.
That does not sound alien to anyone who practises in a patient-centred way. Nevertheless, futility is a word that continues to be used in every hospital, every day of the week. It remains relevent because no doctor wants to advocate treatment that is useless. Futility remains important. Yet, in the absence of definitions we continue to make qualitative assessments.
In the rest of this article I would like to explore what factors influence doctors’ perception of futility?
Changing the guard
An intensive care consultant once explained to me that frequent rotations with his colleagues through the unit minimized the risk not only of fatigue, but of ‘therapeutic boredom’. He meant that after a week of trying to improve patients who were barely able to stand still, he began to run out of ideas. He grew weary of the grinding, entropic drift towards death that no amount of physiological tinkering or pharmacological manipulation could reverse. The only remaining option, to withdraw, grew more and more reasonable. But come Monday a new consultant with a fresh pair of eyes and, perhaps, a new idea, might change tactics and bring about some improvement. It struck me that in this environment, a rarified and unusual one I admit, a physician’s personal definition of futility was hugely significant. But for the patient it was a definition that could change overnight. Surely, I reflected, matters of life and death should not be altered by the psychological state of the doctor in charge. But of course, they do.
The language of futility
Apparently small chances of survival can be interpreted in different ways, according to whether the doctor or the patient/family have a positive or negative overall ‘feeling’. That feeling may be determined by previous experience with a patient. Here I imagine two scenarios* with an estimated 5% survival probability. In scenario A the brother of a socially isolated, middle aged woman with decompensated cirrhosis feels strongly that organ support should not be continued, in contrast to the view of her doctors who feel there are reversible factors worth treating aggressively. In scenario B a man with cirrhosis who has deteriorated several times before is once again admitted to ICU. The doctor feels that ongoing support is not justified, but his son demands that they do not give up. The 5% number is invoked, although there is of course no way that the accuracy of this can be proven. It is quite common for such numbers to be brought up as an easily understood ‘handle’ by which families can grasp the situation. It’s something I tend to avoid nowadays.
The female patient’s (pessimistic) brother: Isn’t it all futile? Five per cent your colleague said, when she was admitted. One in twenty. It’s not a figure to put much hope in, is it? “Fifty-fifty” would sound bad enough.
Doctor: I suspect my colleague wished to impress on you how very ill she was, not to rob you of all hope. But she has survived the first 48 hours. The next few days will be crucial in telling us if she can get through this, depending on how her heart, lungs and kidneys respond.
Brother: And if she shows no signs of improvement, what will you do? Turn off the machines?
Doctor: We may limit the amount of life support and submit to the natural process. The nurses would know that she was dying, and would not call for doctors to give electric shocks or more drugs if her heart slows down and stops. It would be as peaceful as possible. But should we see positive changes, we must give her as much support as she needs, so that those improvements can be built on.
Brother: What positive changes? Less of the blood pressure drug, less oxygen? In my mind those changes would mean very little; she would still be needing the ventilator, she would still be on life support, covered in wires, knocked out, totally dependent. But you will detect signs of improvement, and the process will go on and on.
Doctor: It would not go on indefinitely. She, her body, will tell us if indeed the time has come to die, and we will not strive to reverse the inevitable.
Brother: But isn’t it obvious already? Do you really believe she has a chance…or are you saying these things because you are trained to be positive, to treat, treat, treat? You take her 5 per cent chance and channel all your efforts into it, all the heroic potential of modern medicine. For a child, for a 30, 40-year-old struck down by a heart at- tack, meningitis, leukaemia, yes, but for my sister, so weak, ruined by her addiction … it doesn’t seem right.
The ‘end stage’ patient’ s son: But your colleague spoke of a 5 per cent chance, 1 in 20. So his illness can be reversed, one in every 20 cases. It seems a good enough chance to try for. Or was your colleague being optimistic?
Doctor: I always try to avoid quoting numbers, they don’t mean much in individual cases. I’m not saying that some recovery from this infection is impossible, but even if the other organs begin to function his liver will have deteriorated further in the meantime. He will remain on the ward, permanently confused I should think, just as he has been since his last infection…
Son: He recognized us on the ward. He smiled when he heard my voice.
Doctor: That’s good, but please understand me, I’m describing what he might be, should he have the energy and luck to grab that 5 per cent chance. But I do not think he will be able to take that chance.
Son: But surely you are trained, if not obliged, to concentrate on that small percentage. If you can get him through this … and if he remains stable on the ward, he can go on the transplant list again, get a new liver, and live another 5, 10, 15 years. The alternative is so good, shouldn’t you try your hardest to make it happen?
We see the same statistic presented in two ways; for the female patient with the pessimistic brother 5% is worth fighting for…yet the same doctor tries to convince the male patient’s son that he is concentrating too fixedly on that ‘1 in 20’ chance. Ultimately, the doctor devalues the statistic entirely by resorting to a deterministic outlook – ‘ ..five out of 100 people in his situation might survive, but for him, as an individual, fate may already be decided’. Interpretation is physician dependent.
Divorcing statistics from individuals
As scientists we are trained to read papers and absorb numerical evidence, but, strangely, there is also a duty to disregard data as we approach individual patients. The mystery of numbers when applied to medicine is one on which a statistician can shed more light that me. In ‘Where is the Individual in Statistics?’, Linda Tickle-Degnen dwells on standard deviations and how to discern individual variability in large analyses. Fascinatingly, she quotes Stephen J Gould (the famous paleantologist and science communicator) who was diagnosed with abdominal mesothelioma in 1982:
‘I am not a measure of central tendency, either mean or median. I am one single human being with mesothelioma, and I want a best assessment of my own chances—for I have personal decisions to make, and my business cannot be dictated by abstract averages. I need to place myself in the most probable region of the variation based upon particulars of my own case; I must not simply assume that my personal fate will correspond to some measure of central tendency.’
In 2003 Gawain Shelford, a doctor, wrote about his own relationship with statistics (BMJ – £) after being diagnosed with rectal cancer at the age of 39. He wrote in bold italics,
‘The information that I want is not that 1 in 10 patients will benefit, but whether I am that one…’
and asked if we,
‘haven’t all been bamboozled into believing that statistics and evidence are really relevant in our care of the individual patient. We repeatedly advise patients as to the best treatments for their illness, or for preventing illness, without pointing out that we have no true idea as to whether the treatment will in fact benefit them as an individual.’
Experience and nihilism
So, statistics shouldn’t necessarily drive day to day medical decision making. That’s easy to absorb….they derive from large studies that appear abstract and meaningless outside our personal experience. But we are still busy compiling a personal database, one which will hold great power over us. Those who work with critically ill patients month after month, year after year, are bound to review (consciously or subconsciously) their own accumulated experience. We learn the lessons of our past efforts, and believe the results of those often rather qualitative calculations more than those that those they read about in papers. Such a personal approach was condoned by Lawrence Schniederman et al in their 1990 Annals of Internal Medicine paper, ‘Medical futility: it’s meaning and ethical implications’,
…we propose that when physicians conclude (either through personal experience, experiences shared with colleagues, or consideration of reported empiric data) that in the last 100 cases, a medical treatment has been useless, they should regard that treatment as futile.
But does such a steady accumulation of face-to-face encounters risk the development of bias? Perhaps an extended, bad run will skew the tone and result in a jaded view. The world-weary attitude we sometimes see in more senior doctors may reflect a career’s worth of exposure to poor results in certain conditions. Where once they threw everything at particular patients in the hope that through modern medical techniques and drugs they could drag their patients into the small percentage who might do well, later on they submit to the inevitable. They pick their therapeutic battles in a highly selective way. In doing so they would contend that they protect patients and their families from false hope, needless interventions, pain that is divorced from the reward of a longer life…from futility. But we must beware the self-fulfilling prophecy. If, despite a history of failure, there remains a real, albeit small chance of survival, taking a conservative approach may actually guarantee that the chance is zero.
Optics and caring
The continuation of manifestly futile treatment was described in a New York Times article in 2010. A dying 2 year old with severe congenital abnormalities underwent a resuscitation attempt, apparently for the benefit of his of her parents. The physician’s approach to futility was criticized because it seemed that his duty of care had transferred to the parents, who left the hospital ‘with a feeling of wholeness’. Neonatology and paediatrics are very special in terms of the way the family unit is managed, but in adult medicine there are parallels to this case…where appearances become the focus, even after futility criteria have been met.
Imagine a young man who has hitherto been doing well during his treatment for, say, leukaemia – potentially curable. He develops a severe infection with associated multiple organ failure following a course of chemotherapy. Organ support is continued well beyond the point at which the medical team have accepted, internally perhaps, the survival is impossible. But it is accepted that treatment will continue until his heart stops – why? The detailed logistics of how organ support technologies are withdrawn requires great skill and sensitivity. Treatment that is quite futile may be carried on until family members have arrived to say their final farewells. And on some occasions, in our imagined scenario for instance, I wonder if the decision not to actively withdraw is less a symbol designed to comfort the family, more the fulfilment of a promise to the man himself. To maintain a commitment not to ‘give up’. He and his team made a pact at the outset, to go through thick and thin. There may be a stage in treatment therefore, where the chances of success have dwindled to well within the margin of futility, but in circumstances where it has been understood that it will be the patient who gives the final signal for release (by dying, by the heart actually stopping) rather than the physician. The decision, to withdraw, is never made. The doctor allows futile to continue, confident that it is not causing harm, but knowing that it can do no good.
No wonder the medical community never agreed on the criteria for futility. But as Löfmark and Nilstun proposed in their Journal of Medical Ethics review ‘Conditions and consequences of medical futility—from a literature review to a clinical model’,
‘the following two questions should always be separated in the clinical setting: “What may be regarded as a futile measure?” and “What is justified in futility situations?”
The question is not what is futile, but how to deal with that futility.
This exploration of the subject of futility has made me pause. I’m sure most doctors would admit to developing nihilistic tendencies is some areas. Areas in which we have less knowledge perhaps, areas in which we have less interest. Perhaps, now and again, it is necessary to step back, clear our minds of the vivid, negative examples from our recent past, overlook the statistics that cannot be applied to the individual, remind ourselves that the patient’s prognosis should not depend on our state of mind…and reset.
* I used these dialogues in a 2008 paper called ‘Sophistry and circumstance at the end of life’ (Communication and Medicine)