Limitation of life sustaining therapy in disorders of consciousness: ethics and practice

Abstract

Clinical conversations surrounding the continuation or limitation of life-sustaining therapies (LLST) are both challenging and tragically necessary for patients with disorders of consciousness (DoC) following severe brain injury. Divergent cultural, philosophical and religious perspectives contribute to vast heterogeneity in clinical approaches to LLST—as reflected in regional differences and inter-clinician variability. Here we provide an ethical analysis of factors that inform LLST decisions among patients with DoC.

We begin by introducing the clinical and ethical challenge and clarifying the distinction between withdrawing and withholding life-sustaining therapy. We then describe relevant factors that influence LLST decision-making including diagnostic and prognostic uncertainty, perception of pain, defining a ‘good’ outcome, and the role of clinicians. In concluding sections, we explore global variation in LLST practices as they pertain to patients with DoC and examine the impact of cultural and religious perspectives on approaches to LLST.

Understanding and respecting the cultural and religious perspectives of patients and surrogates is essential to protecting patient autonomy and advancing goal-concordant care during critical moments of medical decision-making involving patients with DoC.

Clinicians and families face challenging decisions regarding the appropriateness of continuing or limiting life-sustaining therapies for patients with disorders of consciousness. Lissak and Young examine the ethical dimensions of these decisions, and the impact of cultural and religious perspectives on practice variation.

Introduction

Amidst crucial moments of medical decision-making involving patients affected by severe neurological disorders or catastrophic trauma, clinicians and families are commonly faced with challenging decisions regarding the appropriateness of continuing or limiting life-sustaining therapies (LST). Decisions to limit LST following severe brain injury are often animated by assessments about perceived poor neurological prognosis,¹ futility, harm or alignment of LST with patients’ preferences, values and goals of care (GOC). Limitation of LST (LLST) has become common practice in the USA, Canada and Europe, with some reports describing as many as 90% of deaths in intensive care units (ICUs) as occurring in the context of LLST.^2-4 LLST discussions are often anchored by debates about how to realize canonical bioethical principles optimally in clinical practice. The principles of beneficence and non-maleficence highlight the moral responsibility of clinicians to maximize the benefit for patients and not inflict harm.⁵ Respect for the principle of autonomy emphasizes patients’ rights to guide goal-concordant medical decision-making. Disparities in LLST practices implicate the principle of justice and the need for its consideration in the context of LLST practice variations.⁶ However, how to appropriately operationalize these principles in the context of LST decision-making is not always straightforward and requires careful ethical and clinical analysis. While some individuals contend that LLST is never justified,⁷ others argue that LLST is imperative if a critically ill or severely disabled patient is at risk of prolonged suffering.⁸ Determining whether life-sustaining measures are promoting recovery or prolonging death and inflicting unnecessary suffering for a given patient can be challenging in clinical practice. While these issues have received substantial attention in the context of terminal illness and end-of-life, they are underexplored in the context of severe brain injury and disorders of consciousness (DoC), where many of these ethical challenges are amplified.

For patients with severe acquired brain injury (ABI), disruptions in neurologic systems responsible for arousal and awareness can lead to DoC.⁹ DoC are a range of conditions of impaired arousal or awareness that can be caused by a variety of aetiologies including cardiac arrest, traumatic brain injuries, anoxic or hypoxic brain injuries, severe toxic-metabolic disturbances, neuroinfections, neuroimmunological disorders, intracerebral haemorrhage and stroke.¹⁰ The heterogeneity of injury types, locations and trajectories of recovery following an ABI challenge accurate predictions of whether a given patient will attain an acceptable quality of life. Given the typically abrupt and unexpected nature of ABI, many affected patients lack advance directives or other documentation indicating what their preferences and goals are surrounding LST. Patients with DoC are invariably incapacitated, and thus unable to participate in medical decision-making, further problematizing the process of arriving at goal-concordant LST decisions. Prognostic uncertainty may also be compounded by diagnostic uncertainty about a patient’s level of awareness following severe ABI. Patients with DoC may recover, sometimes over years; however, the likelihood of improvement is believed to decrease over time in patients with prolonged vegetative (VS) or minimally conscious (MCS) states.^11-14 This further complicates decisions around LLST because the question shifts from ‘Will a patient survive?’ to questions like ‘Will this patient ever regain consciousness?’ or ‘Will this patient recover to a quality of life that would be acceptable to them?’ These concerns are distinct from LLST considerations in many other critically ill patients, where concerns of injury survivability and treatment futility often predominate.

Here we explore salient ethical considerations at the forefront of discussions about LLST in patients with DoC, with special attention to practice variations as well as the cultural and religious factors that may influence decision-making. Clarifying these factors is not merely of scholarly interest but is vital to ensure that clinicians are equipped to proactively identify and responsibly navigate these life-or-death issues in clinical neuroscience practice.

Defining limitation of life-sustaining therapies

Historical basis

The complex dilemmas surrounding LLST in critically ill patients is a relatively modern one. Until the middle of the 20th century, critically ill patients did not survive long enough to warrant discussions weighing the merits of prolonging life with the continued use of invasive life-supporting interventions or maximizing comfort by withholding or removing such interventions.¹⁵ With the invention of ICUs and advances in life-saving medical interventions like mechanical ventilation, patients were surviving beyond what was previously understood to be possible.¹⁵

The notion of a ‘technological imperative’ was a widely held belief that clinicians are obligated to administer life-saving interventions to patients in an effort to improve their health outcomes.^16,17 Subsequent studies called into question whether the application of these life-sustaining medical technologies were at times merely prolonging the process of dying, and in so doing, potentially prolonging suffering.^18-20 Paradoxically, the very innovations that have enabled clinicians to prolong life have forced the medical field, and society more generally, to question whether prolonging life at all costs is in the best interest of all patients.¹⁵

Withdrawing versus withholding life-sustaining therapies

LST includes any treatment that is used to sustain a patient’s life who would otherwise die if they did not receive such interventions. These could include dialysis, vasopressor administration, artificial nutrition and hydration (ANH), antibiotics and mechanical ventilation. LLST encompasses both withholding and withdrawing LST. While these concepts are often viewed similarly, they describe slightly different processes.²¹ Withdrawal of LST describes the termination of therapy that had already been started. Withholding LST refers to the decision not to administer further life-sustaining interventions that have not already been initiated.²² For example, a ‘Do Not Intubate’ (DNI) order directing a clinician to not intubate a patient in the case of respiratory decline is a directive to withhold LST, whereas extubating an intubated patient who remains ventilator-dependent constitutes withdrawal of LST. LLST is importantly distinct from medical assistance in dying (MAID) such as voluntary euthanasia or physician-assisted suicide in which a physician takes an active role in hastening a patient’s death, instead of merely limiting the provision of medical interventions.^23,24 The ethical, clinical and legal ramifications are distinct, with issues pertaining to MAID beyond our present scope.²⁵ In some cases, LLST proceeds through a two-step approach: first withholding interventions (i.e. placing Do Not Resuscitate (DNR)/DNI orders) and then at a later time, withdrawing LST if such a decision is concordant with a patient’s preferences, values and goals.²⁶

Withholding and withdrawing LST are largely considered to be ethically equivalent by researchers and bioethicists based on the ethical theory of equivalence.^27,28 While some contend that withdrawing LST may be preferable to witholding,²⁹ most clinicians who perceive an ethical distinction between withholding and withdrawing LST view withdrawing as more ethically challenging. In a questionnaire completed by 504 ICU physicians in Western Europe, clinicians characterized withdrawal of LST as more emotionally challenging, confirming a potential predilection among clinicians to favour withholding LST.³⁰ In a separate survey study of physicians and nurses, only 34% reported that they view withdrawing and withholding LST to be ethically equivalent,²¹ highlighting a proclivity for clinicians to favour the ethical principle of non-equivalence in this context. This may reflect an underlying clinical tendency towards judging actions that result in a harmful outcome more strongly than ‘omissions’ that result in the same outcome.^27,31 The perceived ethical distinction between withholding and withdrawing LST that is reported by some clinicians may also relate to the different nature of their relationships with patients and their surrogates in each scenario. Clinicians caring for a patient in the ICU have likely already invested extensive time, energy and resources into promoting their recovery, potentially making it more challenging to discuss removing life-sustaining interventions that have already been initiated.

The perceived distinction between withholding and withdrawing LST may be more pronounced for patients with DoC following ABI because of the uncertain trajectory of recovery. The risk of premature withholding of LST in a patient who may have otherwise made a full recovery is disquieting. Withdrawal of LST may occur following a time-limited ICU trial, where patients can be stabilized and receive maximal medical therapy to allow clinicians to get a more complete picture of clinical status and trajectory.^32,33 With more information, clinicians may be better equipped to make improved predictions about a patient’s capacity for recovery and surrogates can be better informed in making LST decisions.

In contrast to settings of terminal illness, LST may not only help patients with DoC survive but may give them the time they need to recover to a state they would consider acceptable. Particularly in the acute phase, the uncertainty of recovery potential and the chance that a patient could end up with a quality of life they would deem unacceptable makes the calculus of when LLST is appropriate in patients with DoC particularly fraught. Paradigms for prognosticating following an ABI have shifted dramatically in recent years. Prognostication following ABI historically centred around admission characteristics including age, Glasgow Coma Scale score, initial exam characteristics, injury location/severity and comorbidities.^34-36 Growing recognition of functional plasticity, advances in neuroprognostic technologies and potential for late recovery following ABI has altered perceptions of the range of possible outcomes following ABI which has been reflected, in part, through the recognized value of updated prognostic estimates and recommendations to avoid early neuroprognostication.^37-41 The 2018 American DoC clinical practice guidelines emphasize the importance of delaying neuroprognostication, recommending a 28-day waiting period before communicating any universally poor statements about prognosis with surrogates of patients with DoC following brain injury.⁴² In light of growing recognition that early neuroprognostication is fraught with uncertainty, this guideline encourages clinicians to observe patients’ trajectories for longer periods of time before making irreversible LLST decisions, especially if a patient may be able to recover to a quality of life that they would consider acceptable. At present, it is unclear to what degree this guideline has influenced clinical care as routine structured health record documentation and reporting of LLST in patients with DoC is limited, complicating the study of empirical trends. Of note, individual decisions to withhold LST may be less likely to be rigorously documented than decisions to withdraw LST, because it is the absence of an action rather than the initiation of an action.⁴³ The LLST process for each patient might vary considerably depending on idiosyncratic practices and preferences, rather than variation based solely on a given patient’s need.⁴⁴ For example, decisions to discontinue versus wean ventilation, or decisions surrounding administration of analgesics with withdrawal or withholding of LST, vary idiosyncratically across and within practice settings.^44-46

Acute versus chronic limitation of life-sustaining therapies

While LLST is often described as a binary decision, the mechanics of LLST are highly variable. There is a dynamic interplay between a patient’s GOC, the family decision-making process and initiation of therapeutic interventions, with continual re-evaluation over the course of a patient’s trajectory. For this reason, the process that ensues after an LLST decision is made varies widely depending on how far along a patient is in their course and what LST are in place or reasonable to consider at the time the decision is made.

When LLST happens early, in the immediate hours to days following brain injury, it may reflect an underlying ambiguity aversion wherein a choice is made that will result in a known outcome over an unknown outcome.⁴⁷ Early LLST decisions may also be based on therapeutic nihilism where one may hold an unduly pessimistic view of a patient’s potential outcome and subsequently guide therapeutic decision-making accordingly.⁴⁸ These, in turn, may animate self-fulfilling prophecy, whereby a patient has a poor outcome because perceived prognostic pessimism results in limiting treatment.^47,49-51 While these influences can affect LLST at any stage, they are most likely to impact patients in the acute phase of injury, when prognostic uncertainty is highest and LST treatment decisions are most frequent.⁵²

In the acute phase, life-sustaining interventions are often temporary and may require downstream decisions to bridge patients to more durable life-sustaining interventions as needed. For example, around 2–3 weeks post-injury, the window when risks of prolonged intubation start to rise, patients who are intubated and are unable to be safely extubated often require durable tracheostomy and gastrostomy.^53,54 These interventions are placed surgically and offer longer-term solutions to sustain vital functions of ventilation and nutrition. The nature and cadence of these interventions create a ‘window of opportunity’ where surrogates may sense urgency to make LLST decisions, knowing that their loved one could have a relatively fast pain-free death, especially if the counterfactual scenario entails possibilities of prolonged perceived suffering.⁵⁵

A several week time frame may serve as a ‘checkpoint’ to discuss treatment plans with a patient’s family and to ensure the continued use of intensive interventions is concordant with a patient’s values and goals. Given recent guidelines recommending delaying prognostication for patients with DoC, a 2–3 week time point may still be considered early in the time course of evaluating a patient’s recovery potential.

For patients with DoC who survive to the chronic state (i.e. for months or years), uncertainty about continued recovery may remain, but over time the pace and likelihood of recovery slows.⁵⁶ LLST decisions in chronic phases may be easier in some sense, due to less prognostic uncertainty, but may simultaneously become more psychologically challenging for families. In the chronic phase, families may occupy a caregiver role and the need to withdraw interventions like percutaneous endoscopic gastrostomy may cause greater moral distress.¹³ Some patients with chronic DoC no longer require ventilation support. These patients may be able to breathe independently but may continue to require ANH. Whether ANH constitute LST in patients that are unable to consume them independently has been debated.^57,58 LLST in chronic DoC typically involves withdrawing or weaning ANH, withdrawing or weaning ventilatory support for patients who remain ventilator-dependent and/or limiting medications that are not providing comfort. The dying process following LLST varies from patient to patient, depending on the interventions limited, the patient’s background condition and comorbidities.⁵⁹ Patients are typically given sedatives or analgesics to manage potential discomfort during this process. However, it can be exceedingly challenging to optimize comfort in the context of DoC as patients are unable to straightforwardly communicate their feelings. For example, when a DoC patient is in pain, they may or may not grimace or demonstrate other signs of physical discomfort. There is some evidence that dehydration diminishes the efficacy of pharmacologic interventions and subcutaneous medications may be malabsorbed due to reduced tissue perfusion, underscoring the need for further study on optimizing palliative approaches in this process.^60,61

LLST can be distressing for family members. In a study interviewing 51 family members of patients in chronic DoC, some families reported being extremely troubled by the prospect of their loved one dying by means of ‘starvation’ and ‘dehydration’ following LLST.⁶² Even in cases where family members unequivocally report that their relative would not have wanted to be kept alive under these circumstances, some surrogates continue to prolong LST because of disillusionment with the prospect of withdrawing ANH.⁶² It was not the prospect of their loved one dying that family members found troubling, but rather the process involved. Many family members communicated that they believed their relative was uncomfortable in VS or MCS and that they had considered attempting to hasten their loved one’s death using other methods they considered to be ‘kinder’.⁶² While there may be less prognostic ambiguity, the physical realities of LLST in the chronic phase thus can have major implications on LLST decisions as it can be more emotionally challenging than at earlier time points.

Decision-making in disorders of consciousness

Determining whether it is in the best interests of a patient with DoC to limit or continue LST can be profoundly challenging. As the canonical principle of autonomy emphasizes, an individual ought to be the steward of their own care, and it is largely accepted that any patient has the right to refuse treatment.⁵ However, patients with DoC are unable to be their own advocates and therefore treatment decisions usually involve a substituted-judgement standard where a surrogate makes decisions on a patient’s behalf. Surrogates are often family members, close friends or relatives tasked with making decisions on behalf of a patient who is unable to do so. End-of-life conversations are often extremely troubling for family members who are trying to integrate information and make sound decisions in the face of tremendous grief.^63,64 Family members who have experienced prior losses of patients with chronic illnesses have been found to be more prepared to make LLST decisions. While some surrogates make independent decisions, most make decisions in concert with other family members who offer support and validation.⁶⁵

Autonomy-based ethics emphasizes that there is no objectively ‘right’ choice as long as surrogates respect patient autonomy; however, it is not always clear what decision a patient would have wanted to be made if they could speak for themselves.^66,67 For patients who have drafted living wills or advance directives, these documents should be carefully reviewed and may serve as a guide. However, with nearly 70% of patients in the USA lacking any form of advanced directive outlining their goals for care, most patients do not have written documentation of their wishes on whether they would have wanted to continue LST or whether in certain circumstances they would prefer LLST.⁶⁸ Lack of clear documentation outlining a patient’s wishes make it more challenging to preserve their autonomy. In these cases, a surrogate must rely on what they know about the patient’s values and goals and infer preferences. Some patients lack surrogates altogether, requiring clinicians, ethicists and other stakeholders to make best-interest decisions on their behalf.⁶⁹

GOC discussions among key stakeholders in medical decision-making usually begin with a discussion of diagnostic and prognostic information and the uncertainty underlying both. Then the values of the patient are considered including their overall preferences, religious or cultural beliefs/obligations, and ideas about what would constitute a minimum acceptable outcome. These clinical and narrative factors must then be placed into a larger context: how might the injury and potential outcomes affect a patient’s family psychosocially or financially?⁷⁰ In settings of DoC, these discussions are problematized by patient incapacity to express their preferences and participate in decision-making. Perceptions around a patient’s experience of physical or existential pain, whether real or perceived, may also influence assessments and decisions made by a surrogate.^71-73 It is important to highlight that while neuroprognostic assessments are often integral components of LST decision-making, other factors beyond prognostic estimates of a patient’s chance of recovering may be influential or overriding in these decisions, especially in settings of uncertainty (Fig. 1).⁷⁴ In the following section, we review some of these factors that influence LLST decisions, explore potential sources of variation in LLST practices and offer potential safeguards to cultivate goal-concordant LST decision-making for patients with DoC and mitigate idiosyncratic practice differences.

Figure 1.

Salient patient, clinician and systems factors that may influence limitation of life-sustaining therapy (LLST) decision-making involving patients with disorders of consciousness (DoC).

Diagnostic and prognostic uncertainty

Discussions around treatment and GOC are often informed by a patient’s diagnosis. Accordingly, accurately diagnosing a patient’s level of consciousness is essential for informed LLST discussions. Despite its importance, there is a known high prevalence of diagnostic errors when assessing patients with DoC. Prior studies have found that some clinicians have difficulty clinically distinguishing VS/unresponsive wakefulness syndrome (UWS) from MCS, with some estimating that patients in MCS are misdiagnosed as being in VS/UWS up to 40% of the time.^75-77

Even though their respective clinical presentations appear very similar, patients with MCS harbour preserved awareness and generally more favourable prognoses compared with patients in VS/UWS. Heterogenous diseases and disorders can cause DoC. Behavioural features indicating a certain DoC state may be shared between patients with different injury types, but a shared DoC state does not imply categorical diagnostic or prognostic equivalence.⁵⁰ In other words, similar behavioural states do not indicate parity between patients within the same DoC category. Even for patients who are categorized as in coma, VS/UWS or MCS, behavioural states can fluctuate–both due to fuzzy boundaries differentiating each state and as patients can experience fluctuations in awareness over time.^78,79 Accurately distinguishing between VS and MCS is imperative as they hold different implications for treatment decisions and prognosis.^80,81 Furthermore, rehabilitation reimbursement decisions may be based on this diagnostic distinction which may have downstream effects on recovery.⁸²

Diagnostic uncertainty may result from sensitivity issues inherent in diagnostic methodologies. While the Coma Recovery Scale—Revised (CRS-R) is often regarded as a ‘gold standard’ diagnostic modality and can be continuously readministered to evaluate potential fluctuations or improvements, it has limitations. For example, cognitive-motor dissociation or language processing deficits may limit a patient’s command-following abilities. As a result, these patients may score lower on the CRS-R than is representative of their cognitive state.⁸³ Furthermore, it can be challenging for clinicians to differentiate between reflexive versus volitional responses on behavioural exam.^82,84 Visual pursuit is one behaviour that is used to differentiate VS from MCS, but, without careful attention, willful visual pursuit can easily be overlooked.^85,86 For these reasons, neurobehavioural examination can be unreliable, and thorough, repeated neurologic examinations focusing on subtle signs of awareness have been emphasized to minimize diagnostic errors.^76,87

There is considerable research being conducted using advanced methods like transcranial magnetic stimulation (TMS)–EEG, stimulus-based and task-based quantitative EEG and functional MRI to diagnose ‘covert consciousness’, a term referring to conscious awareness that evades routine bedside detection and is only detectable by advanced techniques.^88-91 These diagnostic tools have shown promise for detecting underlying evidence of consciousness that is not detectable by bedside examinations; however, their cost and lack of accessibility has limited their use in clinical practice up to this point.⁹²

Diagnostic uncertainty and often intertwined prognostic uncertainty following severe brain injury can make determining the appropriate course of treatment, including whether LLST is in the best interest of a patient, extremely difficult. Prognosis following ABI is understudied and likely to be underestimated for some patients. Perspectives of a given patient’s prognosis may be biased by self-fulfilling prophecy, wherein a patient predicted to have a poor outcome may undergo LLST and subsequently have the poor outcome that was predicted. Even when there is perceived confidence around likely prognosis, there may be instances in which patients survive beyond LLST, defying expectations of clinicians and families.^93-95 A study of acute stroke patients found that 2.3% of patients who had a code status change to comfort-measures only during hospitalization were discharged to acute rehabilitation centres.⁹⁴ If a LLST decision is made and a patient subsequently survives to discharge, adequate follow-up to ensure goal-concordant outcomes in the outpatient setting is crucial and may require palliative care involvement.⁹³ On the other hand, patients who are expected to recover require regular follow-up in order to track trajectories and revisit GOC if needed.

Computational prognostic models have been developed to mitigate some of the clinician biases in prognosis. However, many of the prognostic models are based on behavioural presentation rather injury type, and, given widespread heterogeneity of injury types, they may not be widely applicable to patients. Furthermore, the utility of prognostic models in clinical practice to predict how individual patients will recover is unclear. Current models are often biased by LLST and do not factor in individual values and preferences.^96,97

While uncertainty can breed discomfort, it is not inherently dangerous. Following an appraisal of uncertainty, surrogates and clinicians can approach it in one of two ways: with a framework of uncertainty as a source of danger or with a framework of uncertainty as opportunity. Cognitive biases including self-fulfilling prophecy and ambiguity aversion may take hold in those who attempt to overlook or avoid this uncertainty.⁹⁸ These biases can have the downstream effect of premature LLST.⁹⁹ In contrast, the framework of uncertainty as opportunity leads to tolerance. It does not reduce uncertainty, but rather embraces it as a reality that must be factored into decision-making. To mitigate the risks of these cognitive biases and premature LLST, clinicians should thoroughly acknowledge the degree to which prognosis, particularly early in a DoC, is uncertain.

Perception of pain in disorders of consciousness and limitation of life-sustaining therapies

Pain and pleasure are subjective experiences. In healthy individuals, the experience can be communicated verbally or non-verbally, through gestures or facial expressions. Except for a subset of MCS patients, patients with DoC are typically non-communicative. They may laugh or cry, but often not in response to appropriate scenarios, and therefore it can be challenging to discern a patient’s affective state.^58,100,101 While inferences can sometimes be made from facial expressions or vocalizations, others may lack such capacities.¹⁰⁰ Different cultural perceptions of facial expressions, even those that are non-volitional, may influence a family member’s understanding about a patient’s conscious state. This, in turn, could impact how family members perceive their loved one’s level of comfort, including whether they think it is within their best interest to continue LST. Individuals more likely to characterize a VS patient as experiencing pain include those in a paramedical profession, older clinicians and those who identify as religious.¹⁰⁰ One study found that 90% of family members of patients in VS/UWS reported that the patient could perceive pain.¹⁰²

There are differing views on how the perception of a DoC patient experiencing pain should translate to management. Some believe that LLST may be in the best interest of patients experiencing pain.¹⁰³ Others believe that perceived pain should have no bearing on decisions to LLST but rather should translate to increased prophylactic analgesia. This latter point may eclipse the prior justification that LLST is appropriate for patients in physical pain, because pain can be treated with pharmacologic therapies. Beyond physical pain, patients with DoC may experience existential suffering. Perceived emotional or existential discomfort, which are more challenging to treat pharmacologically, may also be used as justification for LLST.

Uncertainty about whether a patient is experiencing pain can be distressing for surrogates and clinicians and may impact LLST decisions.⁵⁰ In a survey study, clinicians reported that the more a patient appears to experience pain, the less likely they are to withdraw LST.¹⁰⁴ Clinicians who were more likely to respond that VS patients do not feel pain were also more likely to withdraw LST in those patients.¹⁰⁴ Clinician perceptions of whether LLST is appropriate was unrelated to perceived pain in MCS patients.¹⁰⁴

These perspectives highlight an implicit connection: perception of pain may lead clinicians or surrogates to assume that the patient is more aware than was otherwise thought. This perceived awareness could subsequently be interpreted as evidence that a patient has preserved consciousness, raising the question: what role does perceived consciousness play in decisions to LLST?

Just as the perception of pain can serve as justification for or against LLST, perceived consciousness can as well. Evidence of preserved cognitive function or pain perception may be used by some as rationale for either continuing or restricting LST.¹⁰⁵ Higher levels of awareness may indicate a patient has greater capacity for suffering.¹⁰⁶ In response, some surrogates may view LLST as necessary to prevent undue prolongation of suffering. On the other hand, perceptions of pain may be indicative of the ability to have other, more pleasant experiences. Using this logic, some surrogates may elect to continue LST based on preserved awareness as a proxy for the perceived capacity for positive experiences. Even though the patient in this scenario is being perceived as having the same capacity for experience, different frameworks can be used to justify decisions to either continue or limit LST.

The perception that a patient can experience consciousness may translate into a greater belief that an individual is a moral agent. As Diane O’Leary highlights, ‘the authority and inescapability of bodily experience command respect even when patients lack the capacity to experience bodily authority through medical decision-making’.¹⁰⁷ Regarding a patient as a moral agent implies some degree of respect for personal autonomy, but the decision-making abilities of the patient are no different whether they have evidence of covert awareness or not, given the paucity of available tools to enable reliable communication with those who harbour covert consciousness.¹⁰⁸ Perceived neurologic status and capacity for recovery may at times override clinician or surrogate impressions of patients’ previous values, intercurrent preferences and beliefs.¹⁰⁹ To safeguard against this, the values and expectations of a patient should always be prioritized in LLST decisions, regardless of whether the patient is perceived as having the capacity for experience or not.¹¹⁰

What constitutes a ‘good outcome’ in disorders of consciousness?

While research studies often characterize ‘good’ and ‘poor’ outcomes following severe brain injury in dichotomous, generalizable terms, individuals have varied perceptions of what they believe is necessary for an outcome to be considered ‘good’ that are largely based on personal beliefs, values and experiences.¹¹¹ For some, a ‘good outcome’ might be classified as surviving, whereas for others, a good outcome might be classified as regaining consciousness, returning to baseline or achieving a certain life quality. It is up to surrogates and clinicians to reasonably deduce what outcome(s) an individual patient would consider acceptable in order to inform optimal approaches to LST.

Even for surrogates who had explicit conversations with patients prior to their injury, it can be difficult to interpret a patient’s wishes in context. For example, if a patient had previously expressed the wish: ‘If doctors predict I am unable to ride my bike than I don’t want to continue with invasive interventions,’ the following questions might come to mind. Is some period of life in a state of DoC worthwhile if there is hope of eventually regaining the ability to ride one’s bike? What is the maximum time before a patient would no longer want to live anymore? Is this patient conscious? If they have conscious awareness, have they changed their mind? Would they now find it acceptable to live in this state? The answers to these questions and questions like it are highly personal and it is up to the surrogates to intuit answers based on personal knowledge of the patient. However, surrogate perceptions of a patient’s wishes are often imperfect or altogether wrong.¹¹² For patients who are unrepresented, those that are unable to make their own decisions and lack surrogates to make decisions on their behalf, there is emerging guidance that emphasizes involvement of an interdisciplinary team to seek out information on what the patient would have wanted, or, if not available, make decisions based on a best-interest standard.⁶⁹

Who someone is prior to their brain injury will likely shape their perception of their deficits and who they become post-injury if they do recover consciousness. Just as the brain is highly plastic, one’s perception of what constitutes a good outcome may also morph and change throughout one’s course. Hedonic adaptation may impact individual desires, especially as capabilities and values change.¹¹³ Pre-injury desires may differ from a patient’s present desires; however, this transition can be difficult if nearly impossible to recognize in patients with DoC because of the communication barrier. Weighing a patient’s precedent autonomy with their unknown current interests, which may be the same or different from their precedent values, creates an ethical dilemma. The disability paradox describes the preconception among able-bodied persons that life with a disability is worse than it is.¹¹⁴ In fact, individuals with severe disabilities can and often do report a good or excellent quality of life, even though their able-bodied selves would not have predicted that to be the case.^114-116 Furthermore, a person’s perspective of what constitutes a good quality of life can vary considerably over time. While medical interventions should always strive to help a patient achieve their desired outcome, it is important to continually revaluate what outcomes an individual perceives to be ‘good’.

Societal and cultural values likely weigh heavily on individual perceptions of what constitutes a ‘good’ versus ‘poor’ outcome. There is an existing debate as to whether the value of a human life is related to quality of life. In some cultural and religious traditions, life is intrinsically valuable. For individuals who subscribe to this philosophy, the question of what constitutes a ‘good’ outcome may be moot if all potential outcomes that maintain human life are acceptable. In these traditions, discussions about quality of life may be considered less actionable in the context of LST discussions, because the value of a human being and importance of sustaining life is the same regardless of quality-of-life considerations. Implicit assumptions about the value of human life can therefore substantially impact LST decisions.

For patients who lose consciousness following severe brain injury, is regaining some evidence of consciousness a ‘good’ outcome? For some, life without consciousness or the possibility of regaining it would indicate that an individual lacks phenomenal experience or psychological activity which are essential for life to have meaning.¹¹⁷ Insofar as consciousness subserves the capacity for experience, some might contend that some degree of consciousness is necessary for any non-zero quality of life; however, others might view life quality in interpersonal terms such that even if someone cannot personally have subjective experiences, their interconnectedness to others within a web of meaningful relationships meaningfully instantiates quality of life without felt first-person experience.¹¹⁸ The relationship between awareness and quality of life is not linear. Increased awareness may paradoxically breed suffering. For example, a patient who was not aware of the degree to which they were cognitively impaired may come to realization with a sense of dread and resentment.¹¹⁹ Even for those who would consider regaining consciousness to be a ‘good outcome,’ definitions of what consciousness means may differ significantly from person to person, making it difficult to apply that benchmark in practice.¹²⁰

For those who consider a ‘good’ outcome to be linked with quality of life, there are further considerations. Quality of life evades a singular definition due to its subjective nature. Some attempts have been made at classifying quality of life as consisting of ‘objective factors’, like social support and communication, and ‘subjective’ factors, which are personally defined.^66,121

Theorists have argued for centuries over what constitutes a good ‘quality of life’. According to philosophers who prescribe to a hedonistic approach, quality of life is maximized when pleasant experiences far outweigh unpleasant experiences.¹²² What constitutes a ‘pleasant’ or ‘unpleasant’ experience is personal. Desire-satisfaction theory purports that happiness is achieved with realization of a sufficient degree of personal desires. Which philosophical framework a patient assumes can thus influence what they regard as acceptable or objectionable. Exploring what constitutes a ‘good’ outcome for a patient with DoC is essential for preserving patient autonomy in GOC discussions.

The role of clinicians

While the ideological perspectives of clinicians ideally should not unduly influence a surrogate’s decision, in practice, they likely do have some effect. This may be through implicit or explicit communication of values or in the types of information that is conveyed to surrogates about a patient’s prognosis. The ways in which clinicians frame and convey information about a patient’s prognosis may meaningfully influence decision-making around LLST. Ge et al.¹²³ illustrated that LLST was most common when clinicians used an advisory communication approach, which consists of disclosing prognosis and then discussing patient values, rather than using authoritative, informative or responsive communication approaches. Non-neurointesivists were more likely to use advisory communication approaches compared to neurointensivists.¹²³ Clinician perspectives on LLST could influence management if they believe that aggressively treating would not meaningfully benefit or cause harm.¹²⁴ Variabilities in LLST practices shed light on the potential for disparities in LLST practices and the importance for clinicians to consider the ethical principle of justice and the potential for when discussing LLST with surrogates.^6,123

Clinician roles can differ immensely across countries depending on the dominant cultural and religious values. In some settings, paternalistic approaches to decision-making may be the norm and, as a result, surrogates may entirely defer to clinical judgement in decision-making. Even in countries where shared decision-making approaches have largely eclipsed medical paternalism in the last few decades, in some cases, families may still experience subconscious pressures to LLST.¹²⁵ In a study interviewing surrogates 1 year after making a decision to LLST of their loved one, 46% reported perceived conflict surrounding these GOC discussions in the ICU, most related to perceived pressure to LLST due to resource constraints.⁶⁵ A number of legal cases and delicate scenarios where physicians and surrogates disagreed about whether to pursue LLST for a given patient with a DoC highlight an important grey area that must be evaluated on a case-by-case basis.¹²⁶ The concept of ‘futility’ and its lack of definitional clarity in the context of DoC makes it difficult to state unilaterally when LLST is or is not appropriate when there is a lack of consensus between the clinical team and surrogates. Comorbidities, especially those that are terminal or incurable, may be relevant to consider in cases like these where there is discordance between what the clinical team and surrogates believe is in a patient’s best interest.¹²⁷

LLST conversations have implications not only for the patient with DoC at the centre of the conversation but also for family members who will hold the experience with them. A family member’s overall perception of the ICU care the patient received has been found to influence treatment decisions.⁶⁵ Approaching families for such conversations before they were ready led to some being more resistant to GOC discussions and more insistent on continuing aggressive interventions.²⁶ Sociological factors including the doctor-patient relationship and continuity of care may also influence LLST decisions. It is critical that potential sources of biases—individual or institutional—are proactively identified and mitigated in decisions surrounding LLST.⁷⁰ This may be addressed, in part, by employing prognostication checklists and utilizing communication strategies that assess patient values and preferences before providing surrogates with a prognosis. Furthermore, communicating the uncertainty of prognosis in the context of GOC discussions is essential.

In a survey of European clinicians from 32 countries, level of religiosity, professional background and gender of the clinician were significantly related to end-of-life attitudes.¹¹⁰ The same survey found that 80% of clinicians expressed a view that chronic VS is worse than death, which they also believed was a perspective shared by many patients’ families.¹¹⁰ Clinicians with strong religious beliefs were less likely to LLST.¹²⁸ Some strongly held views may manifest in prognostic nihilism and advocating for premature LLST masquerading as ‘best interest’ principles.¹²⁹ Prognostic nihilism coupled with ableism biases can lead to self-fulfilling prophecies.¹³⁰ An empirical survey conducted by the Curing Coma Campaign of the Neurocritical Care Society in 2022 found that standardizing protocols for detecting consciousness, prognostication and determining when data can or should be used for actionable diagnosis/prognosis is an ethical priority for clinicians and researchers in the field. By standardizing approaches to neuroprognostication, clinicians may reduce the impact of undue prognostic nihilism and ableism biases on LLST decisions.^131,132

Establishing trust is critical for effective GOC discussions to take place. When trust between clinicians and surrogates breaks down, which can happen when surrogates perceive mixed messaging from clinicians, surrogates could be less likely to agree with LLST, highlighting the effect of suboptimal surrogate-clinician dynamics on treatment decisions.^133,134 Clinician behaviours like shared decision-making, transparent and consistent communication, acknowledging grief and suffering as well as helping to clarify family roles can help families make LST decisions.^72,73 Realistic expectation-setting is also critical in supporting surrogates through LST decision-making.⁴ However, in the context of patients with DoC, realistic expectation-setting should not be confused with nihilism which can lead to premature LLST. The use of neuroprognostic checklists and effective communication of uncertainty may aid in mitigating the influence of prognostic nihilism and other cognitive biases on LLST decisions for patients with DoC.

Global variations in practices of limiting life-sustaining therapies

Social, religious and cultural factors drastically influence perspectives on the permissibility of LLST.^135-137 This is reflected in the widespread variation of LLST implementation in clinical practice at many levels: between clinicians,¹³⁸ hospitals and regions. A review of 1000 ICUs across more than 30 countries found significant variability in LLST practices worldwide.⁴³ Physician, geographic and religious factors most strongly account for regional differences in LLST.¹³⁹ In the Ethicus-2 study, the largest prospective study evaluating end-of-life practices in ICUs across 36 countries, LLST was found to be much more common in Northern Europe, Australia/New Zealand and North America compared with countries in Africa, Latin America and Southern Europe.¹⁴⁰ Interestingly, LLST practice patterns were found to differ significantly between high gross national income (GNI) countries compared to countries with middle or low GNI. LLST decisions were more common in high GNI countries compared to countries with a low or middle GNI. Patients who underwent LLST in high GNI countries tended to be older, more severely ill and had a longer duration of hospitalization compared to those with LLST in lower or middle GNI countries.¹⁴¹ High GNI countries are more likely to have better funded healthcare systems that may be able to care for sicker patients for longer. In contrast, lower-middle-income countries with less robustly funded healthcare systems may not be able to care for the sickest types of patients and therefore there is less need for such decisions about withdrawing or withholding LST.

Decisions on LLST are more common in East and Southeast Asia compared with South Asia, likely due to social and cultural factors.¹⁴¹ In parts of Asia, clinician perspectives on LLST seem to align with clinicians in western countries; however, the hospital data suggest they practice LLST at much lower rates.^142,143 Legislation, fear of litigation or social reluctance may account for this discrepancy. Japanese perspectives on withholding life-sustaining interventions have evolved greatly in the last few decades. A 1997 study reported that physicians and family members considered withholding or withdrawing LST to be akin to ‘abandonment or even killing’.¹⁴⁴ More recently, public attitudes towards withholding LST have softened in cases where death is inevitable. A survey reported 67% of non-healthcare and 84%–92% of healthcare workers would not want to be intubated if they had ‘no hope of recovery’.¹⁴⁵ However, withdrawal of LST is still considered taboo and physicians in Japan do not openly disclose performing it.¹⁴⁵ Unlike in the USA and other western countries, Japan has no legal recognition of advance planning orders, raising concerns around medicolegal liability. Physicians can be involved in litigation for LLST in accordance with a given patient’s written wishes if the patient’s family members are not in agreement.¹⁴⁵ Furthermore, because of the societal emphasis on collectivism over individuality in Japan, withdrawal of LST may be considered drastic because of the effect it has on a patient’s entire family even if it may be perceived to be in the best interest of the individual patient. Much like Japan and other Asian countries, a perceived ethical distinction between withdrawing and withholding LST is observed in many Middle Eastern countries.^146-148

These geographical differences in practice patterns of LLST reflect underlying cultural, legal and societal values. A comprehensive study found more variation in decisions to withhold or withdraw LST between hospitals within a given country than between countries.¹⁴¹ This between-hospital variation implies that cultural, religious and social effects at the local level may have an even greater impact on practices of withdrawal and withholding of LST at individual hospitals or even between clinicians within the same ICU. In 127 ICUs uniformly located across the UK, LLST rates range from 0% to 96% of patients.¹⁴⁹ Even accounting for patient characteristics, notable variation in LLST practices between ICUs within the same country have been observed.¹⁵⁰ This lack of standardization of LLST practices, even within regions with similar patient characteristics and cultural norms, suggests there may be other unaccounted for factors affecting LLST practices worldwide.⁴³ Among patients with TBI in the USA, withdrawal of LST was significantly associated with race, geographic region and payment status.⁶ This variation of LLST practices for patients with severe neurologic injuries observed within the USA likely extends globally; however, worldwide LLST practices specific to the brain injury patient population are underexplored. LLST variations among patients with brain injuries may, in part, may be attributed to global heterogeneity in definitions of coma and methods for diagnosing coma and DoC.¹⁵¹ Definitional differences may influence clinicians’ perspectives on potential prognosis and its study, which in turn could influence LLST decisions. It is possible that cultural and regional perceptions of the value of consciousness may underpin differences between LLST practices among patients with general illnesses versus those with DoC following severe brain injury.¹⁵²

Religious perspectives on limiting life-sustaining therapies

Given their value-laden nature, the religious background and beliefs of a patient or their family may also weigh heavily on LST discussions for patients with DoC. Identification with a specific religious group does not necessarily indicate that patients or their family members subscribe to all the tenants of their faith, but it may provide spiritual support or guidance, especially in the context of LST decisions.

Religious perspectives may influence GOC discussions for patients with DoC in several important ways. First, the interpretation of certain religious texts may provide direct guidance for whether LLST practices are permissible, and if so, under which circumstances they are appropriate. Depending on the level of religiosity of the patient or surrogate, religious tenants or advisors may be consulted, directly or indirectly, during LLST decisions. Second, one’s religious or spiritual beliefs may influence beliefs in a higher power which could translate to optimism or feelings of hope around a patient’s potential for recovery. One study evaluating the role of religion and spirituality in surrogate decision-making in the context of LLST found that religious practice was not associated with end-of-life preferences, but belief in miracles was significantly associated with lower preferences for DNR status.¹⁵³ Third, religious beliefs may influence perceptions of the value of consciousness or the intrinsic value of human life. For example, dualistic perspectives in relation to consciousness and the brain have been found to be influenced by religious beliefs.¹⁵⁴ These perspectives can subsequently be applied to conversations around LLST and may inform decision-making for patients with DoC.

Religious beliefs have been found to both provide support and create sources of conflict during GOC discussions.¹⁵⁵ Of surrogates who made a decision to LLST, 48% mentioned that faith had provided them reassurance during their loved one’s hospital stay.⁶⁵ Prior studies evaluating religious dimensions that influence personal LLST discussions found that religious coping, higher religiosity and stronger religious identity were associated with increased utilization of LST.^156-158 Interestingly, a study of surrogates who were making decisions on behalf of patients who were unable to do so found that those who reported higher levels of intrinsic religiosity, a measure of personal religious commitment, were less likely to pursue aggressive LST.^153,159 This highlights a potential differential role of religion in the context of LLST decisions in cases where patients are making their own decisions versus when surrogates are making decisions on behalf of an incapacitated patient. Failure to elicit and engage patients’ religious and spiritual beliefs in the context of GOC discussions may undermine person-centred care which could unintentionally limit patient autonomy.¹⁶⁰

Withholding LST was more prevalent than withdrawing LST among patients belonging to Jewish, Greek Orthodox or Muslim backgrounds.¹⁶¹ Conversely, patients with no religious affiliation or those who identified as Catholic or Protestant underwent withdrawal of LST more frequently than withholding LST.¹⁶² Notably, specific literature on agnostic/atheistic perspectives have generally been underexplored in prior studies assessing the importance of religion and religiosity in end-of-life decisions in the ICU. As a result, it is unclear whether, and to what degree, agnostic/atheistic beliefs may specifically influence ethical perspectives on LLST in DoC and is an area that may benefit from further study.¹⁶³ Religious beliefs of clinicians can also influence LLST practices. Physicians who reported being more religious, regardless of their religious faith, were more reluctant to practice LLST.^164,165 In a study of physicians in the USA, those who were more religious reported withdrawing LST to be more ethically problematic than withholding LST.¹⁶⁶ Clinicians who identified as non-Evangelical protestants or Roman Catholics were more likely to endorse this ethical distinction and physicians with no religious affiliation were less likely.¹⁶⁶ Clinician awareness about the sources and scope of variation can help to preserve patient autonomy and reduce conflict surrounding GOC discussions. In the section below, we explore tenants of several major world religions and their perspectives on LLST with particular attention paid to how these perspectives could influence decision-making for patients with DoC.

Buddhism

Buddhism offers little guidance on the permissibility of LLST. As there is no central Buddhist authority, there is tremendous heterogeneity on perspectives surrounding the permissibility of LLST.¹⁶¹ Buddhist tradition generally prohibits the premature ending of life, including suicide, but LLST in the cases of critical illness can be acceptable if a patient is unnecessarily suffering.¹⁶⁷ This can be difficult to interpret in the context of DoC where patients cannot report on suffering or the negative/positive valence of their experiences. Withholding LST is considered ethically equivalent to withdrawing LST in the Buddhist tradition.¹⁶¹ Because of a belief in the afterlife, LLST in patients who are suffering can actually be considered admirable in some cases, as it may be believed to help facilitate the rebirth process.¹⁶⁷ According to this perspective, the natural process of life, death and rebirth should not be interrupted artificially, and prolonging an inevitable and certain death could be viewed as interrupting the process. It is unclear how these principles apply to patients with DoC, where death is not categorically inevitable. The use of ANH is not considered essential and withdrawing or withholding is therefore permitted.¹⁶¹ Analgesic and sedative use is rare during the dying process, as a clear mind during death is viewed favourably.¹⁶¹

Christianity

In the Catholic tradition and other Christian denominations, preservation of life is generally considered sacred, but principles of futility and suffering may be equally important considerations in LLST discussions.¹⁶⁷ Catholicism strives to find a middle ground between two extremes: preserving life at all costs and a disregard for the value of human life which could result in premature LLST.¹⁶⁷ If a patient requires extraordinary measures to keep them alive, but such measures are not providing them any other benefits, withdrawing or withholding LST is permitted. Mechanical ventilation in patients with coma, VS/UWS or MCS could be considered an extraordinary measure, potentially permitting LLST; however, there is insufficient clarity about how futility is characterized. There is no consensus as to whether ANH is considered an extraordinary measure.¹⁶⁸ In a statement, Pope John Paul II explained that withdrawing artificial nutrition is not permitted in patients who are considered persistently VS/UWS.^169,170

Hinduism

Unlike other major world religions, practices in Hinduism are not based on a central text, canon or a specific doctrine; accordingly, there is very little guidance as to whether and under what circumstances LLST is permissible.¹⁷¹ The concept of Karma, a moral law based on the accumulation of merit across cumulative lifetimes, influences Hindu beliefs about life and death.¹⁷² Aggressive interventions in the face of a poor prognosis may interfere with Karma and therefore may not be recommended or continued.¹⁷¹ If there is capacity for a good quality of life, prolonging life artificially is permitted.¹⁷¹ Withdrawing ANH may be an acceptable method of LLST; however, this is likely to be an individual and family preference.¹⁷¹

Islam

In the Islamic tradition, life is considered to be sacred.¹⁷³ Under this framework, LST should generally be pursued except in cases where a patient is unduly suffering or does not have a reasonable chance of recovery. Removal of mechanical ventilation is acceptable if quality of life cannot be restored and is only maintained through the use of extraordinary measures.¹⁶⁸ If death is considered inevitable, the Islamic faith contends that life support can be withdrawn.¹⁷⁴ The termination of ANH as a means of LLST is generally not permitted as starvation is strictly prohibited according to the Islamic faith.¹⁷⁵

Judaism

According to ‘Halacha,’ the Jewish law, human life has ‘infinite value’.¹⁷⁶ Halachic interpretations vary considerably, but withholding and withdrawing LST are considered ethically distinct according to Jewish tradition.¹⁷⁷ There is no obligation to administer LST to a patient who is actively dying or experiencing unbearable suffering.¹⁷⁸ Withholding LST is permitted under these conditions, which may also extend to some patients with irrecoverable DoC. As Halachic decisor R’ Moshe Feinstein emphasized, ‘we are not obligated to heal such a patient who does not wish these medical treatments which merely extend [a] life of suffering. In general, where it is impossible to ascertain the wishes of the patient (e.g. where [one] is in a persistent vegetative state or coma, and there are no advance directives), we may presume that the patient does not want (further treatment) and there is no obligation to heal [them]’.^167,179,180 According to Orthodox Jewish traditions, withdrawal of LST is generally not allowed unless death, defined by heartbeat cessation, will occur within 3 days.¹⁸¹ Interventions considered to be an ‘impediment to the dying process’ can be removed; however, interpretations of what constitutes an impediment to dying in the relevant sense are debated by Jewish medical ethicists and Rabbinic authorities.¹⁷⁶ Analgesic administration for pain management during end-of-life care is permitted, but some rabbis have expressed concerns over the potential for respiratory depression.¹⁸² In the Reform tradition, withdrawing LST is considered acceptable if death is imminent.¹⁶⁸ Except in cases where patients are actively suffering and terminally ill, which is not usually the case for DoC patients, providing patients with continued nutrition support is considered obligatory.¹⁸³ Conservative Jewish traditions permit both withholding and withdrawing LST, including ANH, if patients are considered ‘incurably ill’, which, according to some, includes patients in a persistent VS/UWS.¹⁶⁸

Conclusion

Patients who die in the acute phase following severe brain injury most often do so in the context of LLST. Decisions to limit or continue LST in the context of DoC are multidimensional and are underpinned by diverse clinical and ethical considerations as well as personal belief systems. What is in the best interests of a given patient intimately depends on their preferences, goals and values which are deeply personal and often must be intuited by surrogates. The challenge of how to maximize beneficence and non-maleficence in this context is complex and must account for the specific beliefs and experiences of the patient which, at times, can be challenging to deduce. Beliefs about the permissibility of withholding or withdrawing LST are informed, directly or indirectly, by cultural, philosophical or religious perspectives and values. Through examining potential sources of variation in LLST practices, clinicians, researchers and ethicists can gain awareness and insight into the importance of considering cultural and religious beliefs during conversations around LLST (Table 1). Additional studies evaluating how to engage with surrogates and mitigate decisional discordance and uncertainty are of substantial importance. Given the heterogeneity in LLST practices, standardized safeguards to mitigate risks of bias should be put in place to avoid premature LLST and promote equitable approaches to LST in across multicultural settings in order to protect patient autonomy and promote goal-concordant care.

Table 1.

Towards a framework for responsible life-sustaining therapy (LST) decision-making in disorders of consciousness (DoC)

Framework component	Description of framework component
Managing prognostic uncertainty	Prognostic uncertainty following brain injury is often inevitable. Identifying optimal timing for prognostication and communicating prognostic uncertainty directly with surrogates and/or families may enable them to make more fully informed decisions about LST.
Managing diagnostic uncertainty	Harmonized checklists and protocols for interpreting and integrating diagnostic information in context may help to reduce uncertainty in DoC which, in turn, may reduce self-fulfilling prophecy and risk of early limitation of LST (LLST) in patients that may otherwise have the capacity for recovery. Patients diagnosed with covert consciousness may have higher likelihood of functional recovery but are likely to be underdiagnosed if not rigorously tested. Checklists may include guidance on timing of diagnostics, integration of multiple modalities like functional MRI, EEG and behavioural exams, identifying the optimal timing and interpretation of multimodal diagnostic results.
Communicating with family members	Communication with family members heavily influences the tenor and outcome of LLST discussions. One study found that decisions could be optimally facilitated through an advisory communication approach with family members compared to an authoritative, informative or reactive approach.119 It is imperative that clinicians seek to understand patients’ goals and values and communicates prognostic and diagnostic uncertainty directly with surrogates to ensure that patient autonomy is recognized and maintained following brain injury.
Clarifying what constitutes a good outcome relative to a patient’s perspectives and goals	Defining a good outcome is highly subjective and personal. By gathering information from available resources (family members, advanced directives, etc.) clinicians will be better equipped to facilitate goal-concordant decision-making and goals of care discussions. Clarifying what a given patient would likely regard as an acceptable outcome is essential for preserving autonomy of patients with DoC, especially in contexts of conversations surrounding LLST.
Managing pain and comfort	Control of pain and comfort should be paramount whether an LLST is decision is made. Cultural sensitivity about the use of analgesics is important as certain culture and religions may have specific beliefs about the role of analgesics during LLST.
Addressing cultural and religious perspectives	Cultural or religious perspectives of a patient or surrogate often influence views on the appropriateness of LLST. In accordance with the bioethical principles of autonomy and beneficence, clinicians should discuss the cultural or religious preferences of a patient with the surrogate and understand the how those perspectives might impact preferences surrounding LLST.
Involving clinical ethics and palliative care	Clinical ethics and palliative care clinicians may be instrumental in navigating complex dynamics surrounding LLST conversations. For the subset of patients who do survive discharge following LLST, palliative care follow-up may be beneficial to ensure patients are comfortable.
Harmonizing procedures around LLST	Approaches to LLST differ widely based on individual clinician preferences. Development and deployment of standardized guidelines for LLST procedures in DoC may help to mitigate variation and maximize beneficent care paradigms.

Funding

American Academy of Neurology (AAN) Palatucci Advocacy Award; National Institutes of Health (NIH) BRAIN Initiative (F32MH123001); NIH Common Fund Bridge2AI ‘Patient-Focused Collaborative Hospital Repository Uniting Standards (CHoRUS) for Equitable AI’ project (OT2OD0327-01).

Competing interests

The authors report no competing interests.