Abstract
The concept of futility in medicine refers to the incapability of an intervention to achieve its goal. Futility determinations form the basis for withholding and withdrawing life-sustaining interventions. Criticisms of attempted futility definitions relate to inconstant probability and value judgements concerning the goal pursued. This variability frustrates efforts to define futility. Language modifications and procedural approaches, both important ancillary measures, inherently lack the ability to resolve this difficulty. Beneath the notion of futility lie foundational factors whose revised understanding is required to advance a definition. These factors include autonomy, death and the goals of medicine. Reconsidering the essence and influence of foundational factors is necessary to move beyond a seemingly irresolvable problem. In this essay, I assert that defining futility is not pointless but rather possible, necessary and unavoidable. With this assertion, I respond to the criticisms of futility. These responses together with a corrective understanding of foundational factors lead to a definition of futility. This definition balances respect for patients’ autonomy whilst allowing for interventions that do not undermine the essence of medicine and integrity of those practising it. Defining futility is an exercise in necessity requiring renewed perceptual foundations.
Introduction
From the repository of memories that a career in critical care may generate, a few remain deeply etched in one’s mind. The following narrative describes one of them. Death eventually came. This venerable octogenarian, full of years and events, lay emaciated. Family members surrounded his bed, confronted by the vacuum left by this patriarch’s departure. Their organised roster of nightly vigils had ensured constant companionship and was evidence of a deep respect and love. These had contributed to a dogged determination to persist with active treatment despite the progression of organ failures which had accumulated. A resolve to continue despite his frail and dependent body which upon entering the hospital, had declared that it was unlikely to ever leave. This outworking of duty, honour and love had not translated into a different management pathway despite family meetings communicating his relentless decline. The rhythmical sounds of the mechanical ventilator, renal replacement therapy machine and infusion pumps had become, over four weeks, a part of what silence is. Their therapeutic function had become ineffective against a body that had demonstrated that it had no further capacity to respond or recover. The silence was now imbued with something not previously experienced by those gathered around or those caring for him. A new emotion had been born- one of relief.i
The recollected narrative serves a second purpose - to emphasise the perpetual existence of futility. The fact of human finitude means the conceptual space of futility is ineradicable. “Futility is an inevitable corollary of the fact of human mortality”. 5 It is this inextricable and distinctly human reality that makes defining futility so necessary. The futility of any intervention to ultimately change the course of our eventual death remains a perceived injustice that cannot be avoided or dismissed. Futility remains in life, and to disregard its meaning or deny its parameters and therefore definition is perhaps naïve or exposes a theoretical-practical disconnect.
In this essay, I assert that defining futility is possible, necessary and unavoidable. The objectives developing this assertion are fourfold. First, to survey the historical concept of futility and describe how modifying language and introducing procedural processes may unwittingly impede progress towards a definition. Second, to explore the categories of futility and the challenges they pose. Third, to describe foundational factors which require reconsideration in order to progress the definition. Fourth, by drawing on these concepts, to provide a definition of futility.
Futility in history
Given that medical interventions have existed for millennia and the reality of death assured, the concept of futility is not new. Both Hippocrates and Plato describe the concept of futility in terms of realities to be noted as opposed to options to be considered. 6 The contested aspect of futility appears to have been enabled by advances in technology. 7 Technological advances were in turn driven by a need created by diseases themselves. Poliomyelitis’ pressing advancement of mechanical ventilation providing an example of such. It was the public that first recognised, questioned and then objected to the medical professions’ increasing application of advanced treatments to patients at the terminal end of life. 8 In a letter to the Lancet, the author questioned whether the profession was “…fully aware of the deep and widespread concern among the general public at not being allowed to die”. 8 With penetrating clarity, the letter challenged the prevailing public perception that preserving life came always and in an unchallengeable manner first.
The increasing and deserved right of the patient/family to refuse what was perceived as unproductive medical intervention, gradually changed from a negative to a positive right- the right to demand treatment. 5 The focus had shifted from overtreatment to undertreatment. The emergence and coexistence of both autonomous patient treatment demands together with technological capabilities expanded this moral dimension and the term medical futility was introduced. 9 In particular, futility came to be used by the medical profession as a justification for non-intervention, 6 thereby uncoupling patient demand and practitioner obligation. The concept of futility had acquired an accentuated ethical aspect bringing into focus the application and goals of medical treatment.
Clearing the path towards a definition: Language and procedural approaches
A proliferation of terms appears to have resulted from futility discussions. These terms are said to offer a “…richer and more precise vocabulary, that facilitates better ethical decision-making”. 10 Although this purpose may be served, the expansion of terms clearly parallels a determination to resolve what looks like an intractable problem when attempting to define futility. The meaning of futility has been narrowed and other alternatives introduced, including “potentially inappropriate” and “nonbeneficial”. 10 The increased language specificity, instead of providing a definitive solution, serves rather to underscore the problem.
More destructively, the connotations- the ideas or undertones distinct from the words’ actual meaning, may be incorrectly applied to the term futile. 5 Futile may be mistakenly associated with being unworthy, lacking in value, not requiring ongoing care or even hopelessness. The conceptual error here is using futility to describe a subjective attitude rather than referring to an objective assessment of the action achieving an outcome. 11 Accepting words as a solution without scrutiny may unwittingly lead to the assumption that a resolution lies in the refinement of language. Additional terms may allow insight however should not serve to detract from or confuse the concept. Instead, the attributes of futility require to be engaged with.
A procedural approach may be criticised for similarly circumventing the problem when trying to define futility. In a procedural approach, the problem is referred up a defined pathway of designated interdisciplinary clinical, ethical and legal teams. 5 Communication with the patient/family is integral at each step and consensus is either achieved, or the issue is escalated. 4 Although this approach may help overcome problems such as lack of standardisation, correction of poor bedside decision making or dominance of one group of professional values, it does not substitute for the central problem. The procedural approach should not attempt to be an alternative to defining futility. Rather, its utility as an avenue to aid decision making may have value, although it may also delay and complicate a common occurrence. 4 For the purposes of defining the term, procedural processes are merely manicured avoidance despite providing benefits in some other respects. Upward referral defers rather than eliminates a decision based on a futility definition in some form.
A lucid understanding of the limitations of language and procedural processes are required when attempting to define futility. They are important and required ancillary measures. However, they inherently lack what is required to wrestle with and resolve a futility definition- this is not their domain. Language is crucial when articulating concepts. They require to stand beside and assist rather than obstruct the path forward.
Categorising futility
To say an intervention is futile and so ineffectual in achieving an end is a claim understood in three predominant ways. 12 These categorisations of medical futility allow a deeper understanding of the concept, as well as bring into focus its deficiencies and limitations. These three categories include quantitative, qualitative and physiological futility.
Quantitative futility
Quantitative futility is the very unlikelihood of achieving the goal of a therapeutic intervention based upon probabilistic information. Delineation to further aid application has been described. Schneiderman et al. 11 suggest the unsuccessful treatment in the last 100 cases (personal or shared experience amongst colleagues or empiric data) as a standard against which futility be judged. The concept of quantitative futility is not new, with probabilistic reasoning and likelihood of success seen influencing the thoughts contained within the Hippocratic corpus, where incurability and discontinuation of treatment are discussed. 13 Common to quantitative futility is the application of probabilistic reasoning in some form to the outcome of an intervention in relation to its success. At a very low likelihood of achieving success, quantitative futility is implied.
Qualitative futility
In qualitative futility, otherwise known as value futility 14 or contextual futility, 12 the value of the goal achieved by the intervention is bought into focus. Here, the quality of the outcome is not one of substantial benefit. 12 Again, the idea is not new, having been expressed by Plato in the Republic where he states “…such a life of preoccupation with his illness and neglect of the work that lies before him isn’t worth living”. 15 According to Plato, the legendary physician Asclepius concluded “…that the life of a man constitutionally sickly or intemperate was of no use to himself or others, and that the art of medicine should not be for such…” 15 The central issue captured in qualitative futility is the perceived poor or undesirable quality of outcome achieved with the application of the intervention.
Physiological futility
Here, an intervention is unable to achieve its physiological effect and would provide no physiological benefit. 16 The discordance between treatment and effect according to physiological principles makes this category come close to being value-free. 16 Defibrillation for cardiac failure when no arrhythmia is present provides one such example. A recent leading, intersociety guideline has advocated for this narrow definition of futility, stating that “...the term futile should only be used in the rare circumstance that an intervention simply cannot accomplish the intended physiologic goal”. 17
Conceptual criticisms of futility
Understanding these conceptual categories of futility together with their weaknesses is necessary in order to provide a definition. Physiological futility with its purported value-free nature, is narrowed in its application to such an extent that its contribution to the philosophical debate is negligible. The purposes of this category have been defended as serving to categorise and have relevance in distinct cases, 10 however it is difficult to escape the accusation that this is close to a null category. 18 Physiological futility is not where the contention lies.
The core criticism of both quantitative and qualitative aspects of futility revolve around their value-laden nature together with the question of who has the ultimate moral authority to exercise this. 4 Imprecision exists in medical science as a consequence of the fallibility of the people that apply it, the variability in patients to whom it pertains and the limitation of the knowledge source on which it is grounded. Evidence, if available, applies to a population and not the individual. A value judgement is made in terms of the certainty and threshold when applying a probability to define quantitative. An opinion, bolstered with the façade of numerical certainty, may in reality be an “...opinion disguised as data”. 19
For qualitative futility, the goals and value of a therapy are subjective. The additional problem of whose goals should be prioritised is raised. Whether this variable should be controlled in its entirety by one party is debated. 6 The complexities of perceived quality of life (QoL) including its determinants and measurement are well described. 20 Changes in the manner in which health states are perceived or even the importance given to a domain of life are not fixed. This may result in the seemingly paradoxical situation of those with seemingly extremely poor health having a better QoL than the perceived healthy. The value judgement lies in the meaning and value achieved by the intervention. 6 Unilateral decisions reflect the values and perspective of those making them.
The weight of these criticisms needs to be appreciated- both in terms of their validity as arguments and their role in guarding against an imbalance in their application. Any attempt to define futility appears foiled by a shifting goal that adamantly resists being narrowed or kept static. This seeming futility is reflected in the literature, where dispute or deviation have dominated the landscape since its realised conception. However, this persistent theme underscores a deeper truth which should serve as the engine to drive progress in defining futility. The persistence and reality of futility requires a definition and not denial or shared decision-making tactic. The latter, although important, may serve only to deflect the question; the former to avoid it altogether. Defining futility requires moving beyond the dead-end in which it finds itself. The route out of this quandary starts with examining the premises that lie beneath.
Foundational factors: The roots of influence
The conceptual criticisms of futility are influenced by underlying premises. These serve as roots to nourish or influence the form of the futility debate above. Examining how an understanding of autonomy, death and the goals of medicine may influence the concept of futility, provides insight to progress the seeming impasse when defining futility.
Autonomy
The metamorphosis of autonomy both in character and dominance over other ethical principles (such as beneficence and non-maleficence) requires appreciation. Autonomy, as argued by Saad, 21 has been stripped of its moral and self-reflective elements, leaving unrestrained individualistic choice and non-interference as dominant. This narrow conception of autonomy sees the individual as isolated, removed from or transcending societal influence. 22 This hyper-individualistic libertarian interpretation of autonomy finds its roots in the harm or liberty principle, derived from a paragraph of Mill’s 1859 book, On Liberty. 23 Here, the emphasis is on non-interference, seen as a negative liberty. 24 The individual has an established zone of non-interference in which sacrosanct decisions are exercised, so long as no direct harm is caused to others. It is this “Millian” paradigm, garnered from an isolated reading, that has informed and fuelled the current conception of autonomy- an understanding contrary to what Mill was attempting to convey. 25
Yet an understanding of autonomy which society seems to have increasingly and exclusively adopted is not necessarily correct or helpful. We are not separated by sharp, separate boundaries, removed from our social circumstances and relationships. 22 Rather, our decisions are relationally and socially situated. 26 It is not with suspicion or as a source of hindrance that community should be viewed. 24 Decisions are not just about non-interference and individual self-realisation. Rather, autonomy occurs in a human space within a community. We are people that are embedded in social environments and social relationships and our expression and the role of autonomy should reflect this. 27 A relational understanding of autonomy is required when engaging with futility, an understanding that balances concerns of a socially situated person in partnership, rather than the removed, oppositional, inviolable understanding that sees demands of decision enthroned upon non-interference. Saad 21 cautions against this “…individualistic autonomy centred medicine and its power to undermine the very things which help doctors see patients as persons”.
The necessary historical correction of autonomy against an overly paternalistic system has become unrestrained, overstating its function and confusing an understanding of futility at its core. In addition to a libertarian and narrow conception of autonomy, the supremacy of this value and the precedence it takes seems disproportionate. 25 Respect for persons has become respect for autonomy alone. So powerful is this imbalanced version of autonomy that little appears to challenge it. Yet other values are equally important within medical care. Jonsen, describes how Ramsey (a father-figure in bioethics) would be appalled to see the exceptionless ethical principles collapsed into the principle of autonomy which merely enthrones arbitrary freedom. 28
The altered character and dominance of autonomy has created the perception that the physician must submit and fulfil the requests of the patient. It is this libertarian conception of autonomy that is so influential when attempting to define futility. Autonomy, in its fullness is rightfully placed; now in its narrowly conceived and ascendant form, it refuses a counterbalance.
Death
It is claimed that increasing secularisation, power and education has caused death to be foreign; access to the experience of death and dying has become unfamiliar compared to previous ages. 29 A common culture of death denial is bolstered by unrealistic community expectations in the capacity of modern medicine to prolong life. 1 Ordered and technologically sophisticated intensive care units (ICUs) seem incompatible with incapability. Media portrayal and arrays of technological successes add to this denial. In short, death needs to be decontaminated. Kellehear 29 describes how “there is a tendency in some medical quarters to intervene surgically, to resuscitate or force-feed until the dying person’s body simply collapses under the collective strain of advancing disease and technological over-servicing”. Deaths in the current age are neither good nor well managed. Appropriate recognition, acceptance and management of death adds something fundamental to the futility debate that needs revival in an age that wants to otherwise cling to life at all costs.
The goals of medicine
The broad goals of medicine, amidst its skewed relationship with death and technological advances, appears to have lost it way. These goals are portrayed and weighted towards cure and life prolongation and rightfully so, however relinquishing pursuit of this singular vision is deemed failure. 1 The curative thesis places the sustained and organized effort to heal the sick (or the initial prevention of sickness) as the goal of medicine. 30 Pain relief and palliative care are relegated to being a medical tool used in some situations- the singular curative thesis inflexible in accommodating other goals of medicine according to need and circumstance. 30
The pervasive, ingrained thought in the cure-pursuit is one of doing everything, against all odds, at all costs and always. This goal of obligatory and compulsive pursuit until an absolute inability to postpone death is misplaced. 31 The care of those who cannot be cured together with the objective of a peaceful death are no less important than other facets of medicines’ goals, including cure and prevention. 32 Within futility discussions, this concept about medicine’s goals is one that appears more to have been overlooked, rather than not understood.
Addressing criticisms
Conceptually, futility necessarily exists and remains a daily reality at the patient and clinician level. There is no substitute when abandoning the definition of futility. Decisions continue to be made because they are required, although now they are made in a covert way. 5 Acknowledging the difficulties should not amount to disregarding the need.
Addressing criticisms against quantitative futility
Against the accusation of uncertainty and limitation of probability to provide an absolute boundary to define futility, the notion of reasonableness needs to be applied. 18 Treatments of life and death are then instituted based upon probabilities which although not certain, are however reasonable and founded on the best knowledge and experience available. Similarly, within courts of law, determinations are made not beyond any and all doubt, but rather beyond a reasonable doubt. Efficacy within medical trials is ascribed on the basis of a probability, a p-value of 0.05 by convention, hence implying that there is a 5 percent chance the intervention is not efficacious. Indeed, a multitude of daily decisions are similarly made despite absolute certainty- the problem of induction although present, does not paralyse decision making despite the inherent problem.
Reasonableness is fundamental to triage in the current era of mass casualties. Here, similar to the descriptions by the Egyptian surgeons in the Edwin Smith surgical papyrus some 3000 years ago, expert judgements based upon likelihoods are made. 5 Those patients expected to die are differentiated from those with life-threatening injuries- the later prioritised for treatment. 33
A second response to the problems presented by quantitative futility relate to the statutory privileges held by medicine. The authority to practice medicine is a medical exception within civil and criminal law that would otherwise judge this to be a violation of physical integrity. 9 This autonomy the medical profession enjoys has boundaries: consent, provision of procedures not prohibited by law and intervening in accordance with professional standards. 9 The corollary of instituting treatment despite what may be reasonably expected to infer benefit in the vast majority of cases is that harm may be performed. 18 Non-benign procedures may be viewed as maleficence on the part of the medical professional when the possible good to be gained is highly unlikely. Cardiopulmonary resuscitation (CPR) is a case in point, where consequences including broken ribs, extreme pain, pneumonias and pneumothoraces requiring insertion of chest drains are likely. If the probability of survival with CPR is very low, the conclusion is that for the vast majority of such patients in whom this is instituted, the result will be the above bundle of suffering prior to death. Medical futility operates outside this boundary in that the professional standard of providing appropriate care with the prospect of improving the patient’s condition is broken. Intervening when the very likely outcome involves the infliction of iatrogenic harm violates the principle of beneficence and so is not a legal part of a medical exception. 9 The very tenets of medical practice and ethical care are contravened.
The patients’ autonomy and values, as important as they are, should not necessarily dominate other ethical principles particularly when individuals are required to intervene based upon them. The obligations of the medical profession are important but not unlimited. 18 Surgeons are not obligated to operate in the face of overwhelming risk of mortality, and extra corporeal membrane oxygenation is not provided to terminal patients with metastatic disease. 31 Patient autonomy, initially corrective and welcomed, later rises, overwhelming and then subjugating the balance between patient autonomy and practitioner ethic and obligation. It is the undisputed and largely unchallenged ease with which autonomy has dictated how medicine is to be practiced, which disallows a corrective balance.
Both the notion of reasonableness and the statutory privileges within which medicine operates provide guidance when responding to problems raised by quantitative futility. These require to be applied with a balanced view of autonomy.
Addressing criticisms against qualitative futility
Addressing the variability in the value of a goal produced by an intervention is required before any definition may be progressed. This value-laden decision lies largely within the bounds of the patient/family. The decision to pursue and so live with the morbidities of reduced function and dependency resulting from the intervention ultimately belong to the patient. It is up to the informed discretion of the patient as to whether to proceed to that goal. The provision of healthcare is a service.
However not all qualitatively poor outcomes should be at the discretion of the autonomous patient. Similar to Schneiderman et al., 11 I believe an intervention that is unable to achieve biological life with consciousness is qualitatively futile. Similarly, interventions that will result in persistent dependence on intensive care support and the environment thereof, should not fall within the domain of patient autonomous choice. Defined exceptions on compassionate grounds (e.g. awaiting arrival of relatives) may be accommodated; this flexibility not central to the principle advanced.
These two restrictions go beyond the goals of medicine. Persistence with intervention when faced with these two instances may represent a contemporaneous societal inclination. 34 What is pursued however, is not a mere social approval model. Societal norms may be inconsistent, dependent upon underlying perceptions of foundational factors. Other emotions may govern decisions to pursue a life of permanent unconsciousness or dependence upon critical care support. These may include relatives’ love, attachment, guilt or grief. Although important, their role as decision-drivers is misplaced. Inability to achieve consciousness deprives the possibility of the very autonomy that relentlessly pursued it. Permanent dependence on critical care support confuses the ends with the means; this should not be a goal of medicine. ICUs were never intended as chronic life support residences.
The response to problems arising from qualitative futility should therefore be resolved by allowing informed autonomous patient- decision making within boundaries. These boundaries include the inability to achieve consciousness and the inability to be permanently unencumbered from critical care support.
Practically, qualitative futility is optimally approached using a shared decision-making (SDM) model, which emphasises patient centred care. In SDM, both professional and patient/family are active participants in the deliberative, information-sharing process. 35 When addressing qualitative futility, it becomes clear that a single SDM model will not suffice. Instances of qualitative futility apart from the two restrictions described above are decisions ultimately belonging to the patient. However, the presence of persistent unconsciousness or critical care support curtail this final decision authority. SDM models need to be adaptable to accommodate these different situations.
Sandman and Munthe 36 describe nine versions of shared decision- making, ranging from classical paternalism at one end, to a form of pure patient-driven choice at the other. A Shared Rational Deliberative Patient Choice model involves both patient and professional engaged in shared, rational deliberation, with the patient making the final decision. 36 This SDM would likely best apply to decisions of qualitative futility where likely persistent and irreversible unconsciousness or intensive care support is not a factor.
Qualitative futility with any of the two restrictions, constrains the type of SDM model preferentially to a Shared Rational Deliberative Paternalism version. 36 Here, the patient/family and professional are similarly engaged in shared rational deliberation, however it is the health professional who ultimately decides. This decision rests upon the restricted criteria, restricted by a rectified understanding of autonomy, death and the goals of medicine. Utilising an inappropriate SDM, that is, an SDM that would allow for continued intervention in these two circumstances of qualitative futility, would be to allow the understanding of foundational factors to persist in a distorted form.
The response to problems arising from qualitative futility should therefore be resolved by allowing informed autonomous patient- decision making within boundaries. These boundaries include the inability to achieve consciousness and the inability to be permanently unencumbered from critical care support and its environment. Decision making should be shared, with the type of decision model used requiring adaptation depending upon the boundaries present.
A definition within a pathway
By listening to the responses to the criticisms and allowing these to be grounded in a deeper understanding of autonomy, death and the goals of medicine, a definition of futility may be forged. A wilfulness is also required, and those particularly driven by the engine of necessity and recognising the influences beneath, may progress. Those unduly influenced by an arms-length association or driven by an interest in an ostensibly theoretical impasse, may choose to remain unmoved.
The background of the definition should always entail empathetic and honest communication. The patient/surrogate should always be involved and respected. A shared decision-making model is always the aim- the type of model utilised being adapted to the situation. Procedural processes should exist to allow their benefits. These are all however, ancillary conditions and do not constitute the definition. The definition is in two components.
1. Futility exists when the intervention will more than likely not achieve a meaningful outcome or results in disproportionate harm. The intervention should not violate medical professional obligations and ethics.
Not achieving a meaningful outcome includes:
Permanent unconsciousness Persistent and total dependence on critical care support
Medical professional obligations and ethics here refers to acting with the prospect of beneficence and the unlikely infliction of harm.
2. Futility exists when the intervention will more than likely not achieve an outcome the patient considers meaningful while not contravening component 1.
The definition exists in two parts with fixed and variable components. Component 1 being fixed, component 2, variable. The demarcation between these is the carefully balanced interface between autonomy, beneficence and non- maleficence informed by a revised appreciation of the premises beneath. It balances what will always exist- a patient and a provider- both with ethical concerns. The definition draws from the work of Schneiderman et al.11,37 In another sense, the definition is neither novel nor avoidable but rather exposed. The realities of necessity, people, unattainable certitude and the concept of futility along the pathway of death, mean the definition of futility must exist in some form. Here, words are applied to it.
Conclusion
The concept of futility necessarily exists. Rather than being a pointless exercise, defining futility is essential and unavoidable. The criticisms surrounding the categories of futility with their value- laden determinations are significant and prove an apparent impasse. Reconsidering the essence and influence of foundational factors is necessary to move beyond a seemingly irresolvable problem when trying to define futility. Clarity in these perspectives allows for a definition with necessary flexibility yet discernible limitations. A definition with two components is exposed, balancing respect for patients’ autonomy whilst allowing for interventions that do not undermine the essence of medicine and integrity of those that practise it. Defining futility is an exercise in necessity requiring renewed perceptual foundations.
Footnotes
Acknowledgements
My thanks to an anonymous reviewer of the journal, for careful consideration of the manuscript and insight provided. In particular, I was both encouraged to develop the sections on autonomy and shared decision-making models. This challenged me, and enriched the conceptual text. In addition, I am grateful to Christopher Jordens for fostering and stimulating the trajectory of this project.
Authors’ note
The views expressed in this article are those solely of the Author and do not represent the views of any organisations the Author may be associated with.
Declaration of conflicting interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
Note
i. This fictional account is constructed from a variety of encounters over the course of clinical practise, all sharing a similar thrust relevant to this paper. No particular patient is represented.