Authors inform there are no conflict of interest.
Seppy Pour (1)
https://orcid.org/0000-0001-9032-062X
(1) Independent Researcher and Consultant, Sydney, Australia
E-mail: seppypour@gmail.com
ABSTRACT
End-of-life decision making can be a morally and technically arduous and legally risky task. In practice, the determination of whether a particular treatment is futile is inherently subjective. Moreover, differing goals and expectations of clinicians compared to those of a patient’s guardian, family and friends may mean that that determination can be emotionally charged and assessed from differing perspectives. This paper will attempt to define the concept of ‘futility’ in the end-of-life care context and rationalise its application in the common law context. It discusses this legal concept by reference to guidance provided by courts and recent research in this space. It also outlined the best interests test by discussing its definition, scope, obligations, and limitations. This paper provides guidance to clinicians in a role which may ever require the determination of life-ending medical action.
Keywords: End-of-life decision, medical futility, ethics, terminal care
1. INTRODUCTION
Determining the efficacy of medical treatments in a clinical setting is not a perfect science. In caring for those who are terminally ill, in a permanent vegetative state, or lack capacity, situations may arise in which treatment is largely ineffective and simply prolongs the patient’s death. In practice, the determination of whether a particular treatment is futile is inherently subjective (1). Moreover, differing goals and expectations of clinicians compared to those of a patient’s guardian, family and friends may mean that that determination can be emotionally charged and assessed from differing perspectives.
This paper will attempt to define the concept of ‘futility’ in the end-of-life care context and rationalise its application in the common law context. Namely, it will seek to proffer guidance on how futility can be assessed given the judicial guidance which enforces a ‘best interests’ test as the primary requirement in end-of-life decision making. It will do this by first defining ‘futility’. Second, it will outline the best interests test by reference to common law judgments which provide clarification on its definition, scope, obligations, and limitations. Finally, it will discuss the interaction of futility and the best interests test and consider the implications at their intersection.
For the purposes of this paper, the terms ‘futility’ and ‘medical futility’ will be used synonymously.
2. THE CONCEPT OF MEDICAL FUTILITY
Futility, by its general dictionary definition, conveys the characteristic of something which carries ‘no purpose because there is no chance of success’ (2). The word ‘futile’ takes its origins from the Latin futilis meaning ‘vain, worthless’ (3). In the medical context, futility describes a proposed treatment which is known or expected not to improve the patient’s condition (4). This, in turn, informs the position that the treatment should or should not be administered (4). There exists a general sentiment in the medical field that whatever one’s opinion on or interpretation of medical futility, it is understood to cause harm to patients, moral distress to clinicians and waste scarce health resources for medical institutions (5).
As simple as this denotation might seem on its face, it carries significant ethical and logistical implications in practice. Consider a case in which the only form of relevant treatment is deemed to be futile by the overseeing medical clinician: the determination of futility revokes the clinician’s ethical obligation to provide the treatment, even where family and friends demand the continued administration of that treatment – or to make matters even more complex, other clinicians dispute the determination of futility. Despite its intuitive simplicity in theory, the application of this concept in practice has proved complex. Cranford and Gostin describe futility as “a poorly-defined concept that does not adequately illuminate legal and ethical decision-making at the end of life” (6). The use of the medical futility by clinicians has been boldly described as “inconsistent and self-serving”, going so far as to state that it has been utilised in “an inexact and self-serving way to summarily pronounce a proposed therapy as ineffective (with no knowledge of relevant outcome studies) because, for undisclosed reasons, they do not wish to prescribe it” (4).
Ultimately, academic opinion on the concept of medical futility varies greatly. One school of thought focuses on the inherent subjectivity and situation-specificity of a term like futility, not simply in the decision itself, but at multiple levels of the treatment process – the values of the particular clinician, the values of the patient, the clinician’s interpretation of the patient’s particular symptoms, the policies of that particular medical institution, socio-cultural factors, and the medical goals previously attributed to that patient (7). Alpers and Lo argue that end-of-life treatment includes therein a consideration of personal values; while futility may be informed by medical advice, the determination itself is inherently non-medical (8). Under this rationale, patients and their loved ones are seen as best placed to determine his or her best interests and, in turn, decide on the use of potentially beneficial treatment (8).
The position is not much clearer under the law. ‘Futile’ or ‘futile treatment’ is not formally defined under the law and is therefore determined by subjective judgment on a case-by-case basis, sometimes by way of application to the relevant court of jurisdiction. This most commonly occurs where treatment could, in theory, improve the patient’s health, but the clinician feels it should not be pursued under the circumstances. This may be because the treatment has minimal benefit, or the potential benefit is heavily outweighed by the distress caused by that treatment. A high-profile example of this dilemma was demonstrated in Messiha v South East Health (9).
Messiha (By his tutor Messiha) v South East Health [2004] NSWSC 1061
On 17 October 2004, 75-year-old Isaac Messiha suffered cardiac arrest and was deprived of oxygen for at least 25 minutes while awaiting paramedic attention. He was admitted to intensive care in a what his doctor described as a “deep coma” with “severe” brain damage. As he also suffered from severe lung disease, Messiah was initially put on mechanical ventilation and hydration. Messiha further required significant bodily assistance, including having his eyes taped down to prevent corneal ulcers, constant mouth, nose and throat suctioning, and incontinence management. Following advice from Messiha’s doctor that he intended to withdraw treatment and begin end-of-life comfort care, Messiha’s family challenged the decision in the Supreme Court of NSW under its parens patriae jurisdiction. The Court found that “apart from preserving the life of the patient for a relatively brief period, the current treatment is futile in that there is no real prospect of significant recovery by the patient”.
In finding that withdrawal was in Messiha’s best interests, the Court noted that investigations of the kind required by the Court in this case gave rise to “difficult moral and ethical questions upon which there can be very different views within both the medical profession and the general public”. It also highlighted that in coming to this conclusion, the Court:
[was not making] any value judgment of the life of the patient in his present situation or [disregarding] the wishes of the family and the beliefs that they genuinely hold for his recovery. But it [was] simply an acceptance of the fact that the treatment of the patient, where, as here, the Court [was] satisfied that decision as to the appropriate treatment is being made in the welfare and interest of the patient, is principally a matter for the expertise of professional medical practitioners.
Guidance from the Messiha case indicate a threshold for medical futility, such that the treatment does not, or no longer continues to, offer the patient a reasonable prospect of return to a meaningful quality of life. Noting that this definition still warrants a subjective judgement, professional medical practitioners are considered to be best placed to make this determination.
3. BEST INTERESTS OF THE PATIENT
The concept of futility is not to be considered in a vacuum. Generally, substitute decision-making in the medical context requires a holistic consideration of what is in the best interests of the patient, whether or not the patient has appointed a substitute decisionmaker. The aforementioned discussion of medical futility must be considered in this context. In the UK, case law has progressively supported the legitimacy of refusing or discontinuing futile life-sustaining treatments in the best interests of the patient.
Airedale National Health Service Trust v Bland [1993] 12 BMLR 64 (10)
In Airedale NHS Trust v Bland, a teenager injured in the Hillsborough disaster was left in a persistent vegetative state (PVS) after suffering a “severe” crushed chest injury causing hypoxic brain damage. While he was able to breath on his own, he received full-time care which included artificial feeding through nasogastric tube. Notwithstanding an observable reflex response to painful stimuli, Bland was described as “quite clear [in] that there is no awareness on his part of anything that is taking place around him” and “utterly devoid of feeling of any kind”. Roughly three years after admission, Bland’s clinician, with the support of his family, sought to withdraw treatment. Based on advice from the Coroner that doing so may give rise to criminal liability (despite the ongoing treatment being acknowledged as being “wholly pointless”), Bland’s clinician applied to the Court under its parens patriae jurisdiction.
The Court assessed Bland’s condition, treatment, response to treatment thus far, and medical evidence as to his future prospects of making a recovery against what it considered to be in his best interests. Critical in this judgment was the discussion as to whether life-sustaining measures could ever be withdrawn from an incapacitated patient in their best interests, to which the Court found in the positive. Namely, it opined that in situations where there is simply no potential for improvement in the health and wellbeing of a patient, ongoing treatment of the nature Bland was receiving could not be said to be in his or her best interest. The Court accordingly found that Bland’s clinician could not be found to be criminally liable for his death, nor could he be in breach of his professional duties to treat a patient.
W v M [2011] EWHC 2443 (Fam) (11)
Notwithstanding the landmark finding in Bland, there existed significant uncertainty about what considerations that comprised the best interests test, as well as how the test could be applied to cases which did not relate to patients in a PVS. Accordingly, the definition of ‘best interests’ was left largely unclear.
The UK Court of Protection had opportunity to consider this problem in W v M. The case concerned a woman, M, who had suffered extensive and irreversible brain damage caused by viral encephalitis. The injury left her requiring full-time care, including the provision of food via gastronomy tube. This led her family to seek a parens patriae declaration to have her treatment withdrawn and allowed to die. As the application for declaration was sought, M’s condition was upgraded to that of “minimally conscious state” (MCS). The condition was said to make her “aware to some extent of herself and her environment but [without] full consciousness. Despite the reassessment of her health, her family continued with the application for declaration.
In considering the best interests of M, and incidentally differentiating between the approach taken in Bland, Baker J noted that the starting point is the preservation of life (12). However, his Honour delineated between PVS and MCS cases by outlining that “in [PVS] cases, the balance falls one direction in every case – in favour of withdrawal” (11). Dissimilarly, the best interests of the patient in MCS cases must be determined using a “balance-sheet” approach whereby “the factors for and against withdrawing treatment are carefully examined and weighed in the balance”. In applying this approach to the case before him, Baker J characterized M as:
[U]nlike Tony Bland… M is… sensate, clinically stable, aware of herself and her environment, able to respond to people, and to music, and also, in a very limited way, to communicate about her needs. In short, she is recognisably alive in a way that a patient in the vegetative state is not.
Accordingly, Baker J placed great significance on M’s “wishes and feelings and those of her family, past and present”. His Honour ultimately found, following the exercise of the balance-sheet approach, M’s life not to be overwhelmingly negative or burdensome. He additionally found that M did in fact have a prospect of improvement in the quality and enjoyment of her life, albeit any prospect of significant improvement was remote. On these bases, the Court declined to make an order to withdraw treatment to M.
The Best Interests Test in Practice
The best interests test is inherently flawed. It requires clinicians to make a determination as to the best interests of an incapacitated patient who, in most cases, will have little to no ability to communicate their wishes. Despite this, common law guidance suggests that the wishes of the patient carry significant weight and should form the centrepiece of the balance-sheet approach that courts have endorsed. Further complicating this process is the subjectivity of the analysis process.
It would behove medical institutions to provide procedural guidance to their staff as clearly and early as possible – for example, the establishment of an ethics committee to consider end-of-life treatment options. Adopting a procedurally consistent and transparent approach to the determination of best interests would provide guidance to clinicians tasked with making end-of-life decisions, as well as assist courts who will undoubtedly be called upon to adjudicate contentious cases.
4. DISCUSSION: FUTILITY AND BESTS INTEREST OF THE PATIENT – CAN BALANCE BE STRUCK?
Use of medical futility has been criticised as “allow[ing] the profession to medicalize [sic] a difficult personal, familial, and social decision” which would otherwise be the prerogative of the patient or their substitute decision-maker to decide (6). However, guidance from courts on the concept of the best interests test informs us that the primary common law test for making end-of-life tests is not the determination of futility.
The law is not bound by the unilateral determination of a clinician in determining the best interests of an incapacitated patient. This is particularly the case where the decision has been reached with little consultation with the patient and their family’s wishes, little to no clinical data to support their assertion of futility, or with poor articulation of its rationale. In cases such as Messiha, Bland, and W v M, what can be observed is a professional, ethical, and otherwise good-faith approach to what the respective clinicians believe to be best interests of their patient. These cases demonstrate that for the most part, clinicians are able and willing to consult substitute decisionmakers even in cases where persons responsible have no formal legal right to consent to withdraw life-sustaining treatment.
A number of studies have attempted to qualify the experience of clinicians in end-of-life discussions. One study by Willmott et al involved interviewing 96 doctors across three large public hospitals in Brisbane, Australia, about reasons they provided, or continued to provide, what would be considered futile treatment at end-of-life (5). The study categorised the reasons given for administering futile treatment into three broad categories: doctor-related factors; patient-related factors; and hospital-related factors.
The study found that the most prominent reason for the provision of futile treatment was an inherent value held by doctors that they are trained to treat, which did not simply dissipate based on a determination of futility. However, a number of other subjective moral, professional and cultural reasons went into maintaining treatment: inexperience with death & dying; not wanting to give up hope; poor communication with the patient; being legal risk averse; emotional attachment to patients; and personal experiences of religion. The authors also identified a general sentiment that “every death [is] a failure”, with this view declining as clinicians became more experienced.
The second most commonly cited reason for provision of futile treatment was that patients or their families requested treatment. This finding suggests that the ‘unilateralism’ criticism of medical futility may not be found in practice, with 33 per cent of interviewees citing this as the main reason they administered or continued to administer what they considered to be futile treatment. Doctors also attributed prognostic uncertainty as a reason to administer treatment – with the uncertainty leading to fear of making the wrong decision as to futility or a general difficulty in coming to a conclusive determination that treatment was futile. In either case, it can again be hypothesised that clinicians are undertaking multifactorial assessments in determining whether treatment should be undertaken or continued.
A recent study of the medical futility experience of nurses demonstrated similar findings (13). This study qualitatively assessed the experiences of sixteen nurses in Greece to understand the attitudes of the participants towards futile medical care. Thematic analysis of the participants’ responses showed that fear of legal action, the lack of a regulatory framework, pressure from the patient’s family members, and the acting clinician’s personal feelings were influential reasons for providing treatment which was seen as futile. Interestingly, all but one participant felt that end-of-life decision making should be undertaken either by prioritising the preferences of the patient or be undertaken with all key stakeholders, including nursing professionals.
4.1. Futility and Best Interests – Final Thoughts
Notwithstanding the many competing views on futility and its intersection with the best interests of the patient, the aforementioned cases and research demonstrate that these are largely unfounded. Judicial review imposes the ultimate consideration of the patient’s ‘best interests’ which, while it can often be determined based on the futility of available treatment, will clearly overrule poorly calculated futility determinations by clinicians.
Further countering this criticism are the findings of empirical analysis that not only do clinicians regularly administer treatments that they otherwise consider to be futile, but they do so for a number of reasons and motivations – from their own reasons, to reasons which relate to the patient and their loved ones, to reasons beyond their control. These studies demonstrate that in a large proportion of cases, futile treatments are administered on the request of the patient and their responsible persons. Assertions that futility determinations undermine or otherwise cannot co-exist with the best interests requirements of end-of-life decision making are therefore unproven.
5. CONCLUSION
End-of-life decision making is one of the most difficult tasks an individual can undertake. Perhaps the only circumstance which can make the process more difficult is for that decision-making process to be undertaken by a substitute decisionmaker, tasked with making the decision in the best interests of the principal individual. This is not simply a hypothetical philosophical conundrum, but a reality for healthcare professionals in the Western world. This paper has attempted to scratch the surface in understanding the moral difficulty and objective complexity of end-of-life decision making in the context of a patient who unfortunately is unable to communicate their own wishes in relation to their care and treatment. Where no substitute decisionmaker is appointed under guardianship, this process can be rife with uncertainty, subjectivity, and conflicts of interest.
This paper discussed some of the competing definitions of what it means for treatment to be deemed ‘futile’. It discussed some of the implications of these approaches, with one argument being that it empowers the overseeing clinician to unilaterally determine the best interests of the patient, completely excising family, friends, and other substitute decisionmakers from the end-of-life decision making process. However, by reference to case law which considered the judicial interpretation of the best interests test, it can be safely concluded that the unilateral declaration of medical futility does not, in and of itself, constitute a valid action in the best interests of the patient. Empirical studies on the experience of doctors and nurses with futile treatment also demonstrate that this criticism is not the case in practice.
Ultimately, one must appreciate the difficulty, both morally and empirically, with which these scenarios take place. To aid in this process, ‘futility’ should be defined in a manner which is procedurally transparent, articulatable, and consistent. Hospital and other medical institutions are advised to undertake all reasonable steps to allow clinicians to undertake a procedurally consistent and transparent approach to decision making in the best interests of patients who cannot provide or refuse consent to life-ending actions. Although it is unlikely that a clinician’s determination will be overturned through judicial review, the potential for judicial intervention is real where a clinician fails to undertake adequate consultation or clearly results in a determination deemed not to be in the patient’s best interests.
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