Françoise Baylis explains several ways in which people who argue for the unilateral withholding and withdrawal of life-sustaining treatment use the term futility.
Twice I have provided expert ethics testimony in difficult legal cases where physicians wanted to withhold or withdraw life-sustaining treatment from an incompetent patient without the consent of the substitute decision-maker. In both cases the testimony I provided focused on the ethics of substitute decision-making and the meaning of medical futility.
The first case, Sawatzky v. Riverview Health Centre, was in 1999. This case involved a 79-year-old man with moderate to severe Parkinson’s disease, cerebrovascular accident, chronic aspiration pneumonia and dementia. The treating physician placed a Do Not Resuscitate order in Mr. Sawatzky’s chart without first obtaining consent from the patient’s wife (his substitute decision-maker) or the Public Trustee. According to the physicians, continued treatment was futile.
The second case, Yeung v. Capital District Health, was in 2006. This case involved a 45-year-old man with terminal gastric cancer to multiple bony sites. His wife wanted aggressive treatment in the intensive care unit (ICU) until such time as her husband could receive the services of a practitioner of traditional Chinese medicine. The physicians involved in Mr. Yeung’s care insisted that the ICU was not an appropriate place for a patient with no place to transition to and for this reason they did not want to admit him to the ICU. According to the physicians, continued treatment was futile.
I had no direct involvement in the case of Cuthbertson v. Rasouli, recently decided by the Supreme Court of Canada. I am struck, however, by the similarities between this case and the prior cases involving Mr. Sawatzky and Mr. Yeung. The patient at the centre of the current drama, Mr. Rasouli, was not competent to make health care decisions. The physicians and substitute decision-maker (Mr. Rasouli’s wife and litigation guardian) could not agree on a treatment plan. According to the physicians, continued treatment was futile, and their decision to withdraw life support from Mr. Rasouli was a medical decision that did not require consent from Mr. Rasouli’s substitute decision-maker.
While the Supreme Court of Canada majority decision did not turn on (or even address) the issue of futility, with the considerable media coverage and commentary focused on futility in end-of-life disagreements, it is both important and timely to reflect on the problem of equivocation with the ever-so-slippery concept of futility.
There are several ways in which people who argue for the unilateral withholding and withdrawal of life-sustaining treatment use the term futility. Sometimes futility is used to refer to health care interventions that, based on available medical evidence, will not work. Other times futility is used to refer to health care interventions that medical professionals believe are not worth doing.
In the will not work category are interventions that will be physiologically ineffective. An example of this is respiratory failure where mechanical ventilation will not maintain adequate ventilation and oxygenation. This narrow understanding of futility is as close as possible to a value free “objective” understanding of the concept. Here, futility is about a life that cannot be saved.
In the not worth doing category of futility are situations where there is disagreement about the goal(s) of treatment and what constitutes success. For example, the physician might think that success means survival until hospital discharge. When this is not possible, treatment is futile (meaning not worth doing). The substitute decision-maker, on the other hand, might think that alleviating total dependence on intensive care counts as success, and it doesn’t matter that hospital discharge is highly unlikely. Does ‘success’ mean survival, discharge from intensive care, or discharge from the hospital?
Also in the not worth doing category are situations where the physician and substitute decision-maker agree on the goal(s) of treatment and what constitutes success, but disagree on whether the probability of success is sufficiently high to warrant life-sustaining treatment. For example, the physician and substitute decision-maker might agree that the goal of treatment is survival until hospital discharge, but the physician might think the likelihood of this happening is so low that treatment is futile (meaning, not worth doing). The substitute decision-maker, on the other hand, might think that any chance of success (no matter how small) is a chance worth trying for. What likelihood of success is sufficient for an intervention to be worth doing – 3%, 10%, 25%?
And finally, the not worth doing category of futility also includes situations where the disagreement is not about the high standard for what counts as success, or the low probability of success, but rather is about the quality of life before or after life-sustaining treatment. For example, the physician and substitute decision-maker might agree that the goal of treatment is to alleviate total dependence on intensive care and they might also agree that there is a reasonable probability this could be achieved. But the physician might believe that the patient’s quality of life is (or will be) such that treatment in futile. The substitute decision-maker might think otherwise.
In contrast to the will not work category of futility (that only requires a medical judgement of effictiveness), the not worth doing category of futility clearly involves value judgements. The critical question then is: ‘whose values count and to what degree?’
With the recent Supreme Court of Canada decision in Rasouli, the legal answer to this question is that physicians must seek consent from patients’ substitute decision-makers to the withdrawal of effective life-sustaining treatments (meaning, all treatments except those in the will not work category). If the substitute decision-makers refuse, at least in Ontario, physicians can turn to the Consent and Capacity Board for a determination. The Consent and Capacity Board has the authority to endorse or displace refusals by substitute decision-makers.
In brief, there is a significant moral difference between cases involving life-sustaining treatments that clearly will not work, as compared with life-sustaining treatments that physicians think are not worth doing. Only the former are medical decisions. Decisions about what treatments are worth doing are not for physicians to make on their own.
Françoise Baylis is a Professor and Canada Research Chair in Bioethics and Philosophy, Dalhousie University, Halifax, Canada.
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‘Will not work’ means the probability of an intervention achieving its purpose is ‘0’. This is a rare occurrence — e.g., multiple bullets wounds to the heart cannot be treated by CPR.
‘Not worth doing’ refers to any intervention where anticipated effectiveness is above ‘0’. That is, there is a chance (i.e., some percentage above 0) that an intervention will achieve its purpose and someone believes the chance is not high enough to justify the intervention. In the literature a number of different percentages have been proposed.
Brief, most futility decisions are of the ‘not worth doing’ type. They are thus moral not medical decisions.
For a more thorough discussion of this please see, Baylis F. (2000) Expert Testimony by Persons Trained in Ethical Reasoning: The Case of Andrew Sawatzky, Journal of Law, Medicine & Ethics, 28(3); 224-31. http://noveltechethics.ca/files/pdf/523.pdf
It seems that the lesson doctors should take from this is at futility (in practice a least) is always a moral decision. As Dr Berry says, treatment is never simply ‘life sustaining’ – it has a significant burdens – most importantly it has the potential to cause great suffering. Many life-sustaining treatments have a far higher chance of causing suffering than relieving it. I know of doctors who no longer work in oncology because they felt that so much of their work fell into this category. Like many patients, but not all, I do not believe that any life is better than death, but, as you say, the question of what kind of life is worth living is a moral question that will always have to be deliberated.
In the light of Dr Berry’s comments though, it is interesting that doctors choose less intervention at the end of their lives than they recommend for their patients, raising the concern that over-treatment, rather than under-treatment at the end of life is the greater problem. http://www.alternet.org/personal-health/doctors-secret-how-die-right
This article asks a question that I have also thought hard about – are doctors abe or qualified to make quality of life estimations? The case of David James in the UK threw a spotlight on the matter. His doctors wished to withdraw life sustaining treatment, but a judge argued that some of their justifications for this were baseless. This included an assessment that without the ability to play or enjoy music he would not want to live. The judge pointed out that,
‘the only basis for this last observation was a conversation with a nursing sister who says that DJ had apparently told another member of staff early in his admission to intensive care that he would prefer to die than not be able to play the guitar. Not surprisingly, DJ’s family has been distressed at the use to which Dr _ put this snippet of information.’
He went on to say,
‘I consider that the (medical) argument … significantly undervalues the non-medical aspects of DJ’s situation at this time.’
‘Moreover, as Hedley J put it [in another case]…. a life from which others may recoil can yet be precious. … In this case, DJ’s family life is of the closest and most meaningful kind and carries great weight in my assessment.’
A study by Perron et al found that,
‘Physicians systematically underestimated their DNR patients’ mental state and physical condition: 23.9% of patients with a normal MMSE were considered by their physicians to be mentally abnormal, 28.7% with a normal ADL score were seen as physically moderately or totally dependent. For quality of life, they misclassified 44.1% of the patients reporting a good quality of life.’
I think most doctors are wary about basing medical decisions on quality of life estimates. That’s not to say it is an entirely irrelevent factor. Perhaps focussing on the present ‘burden’ of treatment is better, rather than future ‘quality’.
For detailed review of the DJ case and more evidence of physician fallibility:
My apologies, my previous comment sounds much less questioning that it is intended to be. I’m struggling with the differences between ‘would not work’ and your second example of ‘not worth it’, for example, how unlikely to work would an intervention have to be to qualify as ‘would not work’ or would any chance of success place an intervention in the ‘not worth it’ because it’s very unlikey to work’ category. I would really appreciate it if you could help, Thanks, Jonathon
Thanks for this lovely clear piece I discovered via @medethicsandme
In my experience, resuscitation is often attempted when it is futile because chances of survival are vanishingly small as described here: http://abetternhs.wordpress.com/2011/08/27/do-not-resuscitate/ Most DNR orders I’ve witnessed (as a NHS hospital junior doctor in the mid-late 90s) this is how futility was commonly understood.
Most of us junior (and some not so junior) doctors at that time, would equate this minimal chance of success with ‘would not work’.
According to your reasoning, ‘would not work’ can only be applied to a clinically inappropriate intervention (e.g. oral nutrition in a minimally conscious patient, blood transfusion in a patient with acute left-ventricular failure, etc.) which would never be considered … because it is clinically inappropriate.
Consequently the only category of futility that occurs in practice is ‘not worth doing’. The differences lie in deciding how different values are balanced in defining worth.