Asian Bioethics Review

Introduction

As Western society increasingly has to deal with issues of aging, health and illness, ethical issues surrounding End of Life (EoL) care have focused on futility, decision-making about life-sustaining treatments and forms of euthanasia. All are problematic: the concept of futility is controversial,¹ the decision-making process is under-researched² and forms of euthanasia remain marginal in clinical ethics and in medical thinking despite around 80% of patient deaths in a hospital setting involving some form of withholding or withdrawal of care.³ EoL decisions for terminally and critically ill patients are widespread, and while some regard euthanasia and limiting care as ethically equivalent,⁴ clinicians feel that the distinction is important⁵ despite finding such decisions very demanding. Some clinicians find withdrawing treatment more difficult than withholding it ab initio, because they feel that active withdrawal of life-sustaining treatment causes the patient’s death whereas letting the illness take its course does not.⁶

This paper explores EoL decisions in the light of the unexpected encounter reported above and argues that we can profitably reinstate the idea of the human spirit, a powerful concept in many cultures expressing the preciousness, liveliness, uniqueness and fragility of human life. For instance, the notion of shen, which has undergone several evolutions of meaning but is most plausibly linked to the human spirit or the essence of human life, has been vital for traditional Chinese medicine (TCM) and Chinese culture in general and, although found in religious texts and traditions, is not confined to them. This concept can be [End Page 293] related to or expressed by an inclusive moral openness that affirms the living person with whom we engage, even if death is a real and imminent possibility. Noting the diverse terms and heuristics used in EoL decisions⁷ which, even when they appeal to concepts such as substantial benefit and the risk of unacceptable badness (RUB), can neglect this powerful intuitive human connection, we propose a responsive approach to EoL care decisions, built on the patient’s attempt to respond or to show what s/he can do and an intersubjective open-ness to the emotional journey that decision-makers face as a way of arriving at intuitive and widely appealing value- (or spirit-) affirming decisions in conditions of uncertainty.

End of Life Decisions and the Duty of Care

The distinction between “letting die” through withholding and withdrawing care and “euthanasia” is well recognised in both courts of law and medical codes, even though some philosophers argue that there is no moral difference between the two.⁸ In clinical life, most EoL situations evolve and change as treatments with variable effects on the patient’s condition are applied; often these treatments are carried out in the face of considerable uncertainty, some of which will resolve over time during attempted therapy. The actions of the physicians involved are usually assessed in relation to: (i) their duty of care and the appropriateness of clinical interventions (such as antibiotics, good nursing, attentive observation of changes in the patient’s condition and so on); and (ii) the realistic likelihood of producing a substantial benefit for the patient.⁹ In medical jurisprudence, as in the case of Tony Bland,¹⁰ life sustaining treatments (LSTs) are usually stopped when the patient’s condition has deteriorated to the point where further intervention can no longer benefit him or her and are therefore no longer in his/her best interests in terms of realistic and meaningful continued life. The justification of withdrawing or withholding life support in such contexts is sometimes linked to autonomy and the right to refuse treatment, including life-saving treatment (LST) found in many codes of patient rights. Such codes generally place considerable weight on what the patient would want if competent¹¹ and involve consulting next of kin or surrogate decision-makers, even though such decision-makers are often not of the same opinion as those for whom they are deciding.¹² In fact, the heuristics in such decisions reflect several key factors: (i) the patient’s cognitive state, (ii) the patient’s age, (iii) the percentage of doctors who would not recommend the LST, (iv) the percentage of patients in similar situations declining LSTs and (v) the perceived “default” decision.¹³ Although ethical justifications for letting die are widely [End Page 294] accepted, clinical practice varies widely, due to often invisible factors such as the medical ethos of an institution.¹⁴ We will argue that ethical arguments and principled decision-making protocols¹⁵ tend to neglect an awareness of the elusive factors associated with a widely felt and variously articulated sense of the human spirit, responsive and communicative (or rhetorical) engagement, and narrative aspects of EoL decisions that tend to reflect a sense of the individual uniqueness of each patient.

Withholding and Withdrawing Care: Responsive and Narrative Factors

The arguments for withholding and withdrawing care often turn on assessments of futility—treatment is no longer considered to be in the best interest of the patient and should be stopped when they are merely prolonging dying. However, despite its common use, a closer examination of futility reveals problems, even when seen as the improbability “of achieving an outcome the patient regards as worthwhile”.¹⁶ The problems are compounded when we tell the patient’s loved ones that treatment is “futile” even though the clinical team have “done their best” to save him or her. The ensuing discussion can seem uncaring and dismissive of the human worth of the person who is likely to die.

Futility is critiqued as “a conflation of clinical judgment about outcomes of treatment and the quality or even the value of life and to allow us to discern when we are doing no more than prolonging dying.”¹⁷ It is often perceived as reflecting only the values of doctors as when, for instance, quantitative futility is defined as the treatment having a less than 1% chance of changing the clinical situation (e.g. giving oxygen to a person with terminal respiratory failure due to emphysema).¹⁸ This runs against the intuitive sentiment that for a real person, who could be my son/daughter/mother/grandfather, a 1% chance is better than no chance at all. Qualitative futility defines futility more broadly in terms of value and the whole life of the patient; however, whose values are involved? Consider a hypothetical patient, Mr L, a 78-year-old man with metastatic cancer of the liver but who is about to become a grandfather. Despite a low probability of any major improvement in his condition or even of survival, a chance to see his grandchild means that life-prolonging therapy is not futile in his eyes.

Often futility judgments reflect a complex clinical situation in which the physician tries to take a balanced view. In this case, Mr L may not only be unlikely to benefit from further chemotherapy but could also become very ill. Thus his physician may feel it is wrong to even raise the possibility. [End Page 295]

If the concept of futility in the EoL care setting is problematic, the fact that what constitutes a “good death” varies widely between cultures and individuals, makes EoL decisions even more problematic.¹⁹ Some patients wish to die quietly and with dignity; others aim to hold on to life for as long as possible. Some regard extensive pain relief or even terminal sedation as worth using while others regard any loss of clarity of mind in the face of death as something to be avoided. Given that families may be both uncertain and distressed,²⁰ EoL discussions ought to be aware of our intuitive connection with the human spirit and a responsive equilibrium in which those intuitions can be shared.

The idea of the human spirit is close to an ancient and very widespread notion found in many cultures, according to which the spirit of a creature is its principle of life (an Aristotelian concept). In order to appreciate its universal significance, we will not restrict our interpretation to one tradition but will explore different traditions.

Aristotle identifies a principle of life animating any creature as that which makes it a formed thing rather than just the matter that it comprises (De Anima 412a). As this principle is opposed to death, it cannot merely consist of the matter of a mortal creature (which at death does not instantly change) but as something co-extensive with the body but which must be understood in a different way from its material constitution. In a human being, this living form links us to the world of discourse and opinion, and animates us as inhabitants of that domain. Aristotle remarks that “thought is found only where there is discourse of reason as well as sensibility” (427b: 11–2). Thus, once we are irreversibly prevented by a bodily change from being able to participate in interaction and conversation with others, something of central importance in the world of the human spirit has been lost. Having said that, Aristotle notes the naturalness of the human psyche and its origins in the quality of life that causes us to be formed in such a way as to have the potential to participate in life as a being-in-the-world-with-others (Gillett 2008, esp Chapters 1 and 2).²¹

Medically and philosophically, the doctrine of shen was first systematically articulated in Huangdi Neijing (The Yellow Emperor’s Classic of Medicine) c. 4th–2nd century BCE, which constitutes the theoretical foundation of TCM until today.²² Being present from the beginning or foetal stage of every human life, shen is of utmost importance for each living human being. A human life with only physiological functions and no shen would be a mere biological being, not a real human life. Shen can be weakened by illness caused either by external pathological factors or an internal imbalance of qi and yin and yang or both. Shen has been treated as the critical criterion that determines if a [End Page 296] human life is living or dead. Medical interventions such as acupuncture and herbs should serve not only to restore the disturbed balance of the body but also strengthen the impaired shen of the patient as a person. In the late ages, this concept was extended from medicine to Chinese aesthetics, in which shen has been theorised as the essence of any creative artistic work such as a poem, a painting or a piece of calligraphy, hence the aptness of translating it into the evocative but ill-defined concept of the human spirit.

Shen, or the (not quite identical) Western idea of the spirit of a person (often linked to a triune body, soul and spirit), may show up not only as an artistic impetus or animation, but as the extraordinary resilience of some patients facing a potentially life-ending health crisis.

Responsive equilibrium focuses on a genuine moral openness on the part of the physician to the patient and the nuances of an inclusive discussion through which decisions are made. This discussion can change as the patient responds or fails to respond to the challenges of the illness journey. These responses ought to be carefully attended to by a clinician such that a balance can be struck between the various factors in the situation—the patient’s response to the treatment, the decision-making group’s feelings, the need for a responsible use of resources, the need for emotions to be worked through and not forced or rushed, and so on. Such an open-ended approach allows the conversation to touch on points that the patient and family feel are necessary to allow a good-enough decision to emerge, one that should stand up to being related for oneself and others after the event, according to the values of those who tell the story and those to whom the story is told. In such stories, the spirit of the patient and being true to the unique person at the centre of the crisis is important. To say that one did the best for the person who lives or lived among us, in terms which she or he would find meaningful, is vital in that story.

Differing perceptions of futility and what is fitting emerge in a responsive mode of interaction when “pathways that lead to death are clearly conveyed”.²³ These may mirror different points of value and disvalue and varying cultural perspectives, but a responsive attention to the intuitive and spiritual aspects of EoL situations allows these to be recognised and usually accommodated. However, studies asking physicians to classify interventions as futile found significant variations,²⁴ so that not only are the relevant predictions notoriously uncertain, many lay people (and indeed many physicians) also find it hard to articulate what is really important and how they hope things will unfold during the decision-making process. If EoL conversations touch not only on the margins of life but also on matters of spirit (elusive and intuitive as they might be), they illuminate our clinical lives and our understanding of what underlies our [End Page 297] decisions. Ultimately all such decisions must be made in the context of clinical realities that may be “uncomfortable, ambiguous, confused, and inconsistent”²⁴ and therefore deeply troubling, given the fluid nature of our “duty of care” and our varying conceptions of spirit and value. Yet they can also be occasions of growth and engagement with others and of deeper self-reflection. In a sense that is a service the dying can do for us.

Uncertainty and Responsive Equilibrium

If uncertainty dogs our steps as we try to do our best for patients, then we need an ethical space for being responsive to the values expressed in fluid interpersonal situations (and not just reflective of the guidelines and wisdom we have imbibed). Given that every healthcare professional has encountered patients who seemed certain to die but went on to survive, a humble openness to the surprising and serendipitous is essential. But almost every one of us has also dealt with patients who survive one episode of care only to fall foul of yet another crisis on their “death way” or “spirit journey”. Thus we need to find modes of EoL decision-making that can accommodate “the patient’s individual narrative as we try to preserve well-being, comfort, and dignity.”²⁵ In preserving those values, the response of the patient—their show of spirit—is an indication of what Kant calls the “animating principle in a person”.²⁶ This “spark” or indication of life that sometimes reaches out to us from a patient who is in a desperate medical situation enhances our care for the patient.

In cases of chronic, incurable illness, withdrawing and withholding care may be relatively straightforward. For instance, an 85-year-old patient with congestive heart failure and pneumonia might have made it clear that she does not wish to have her life artificially prolonged, so we can be fairly sure that the patient would not want ventilation or cardiac support. Her attitude, perhaps reflecting the stage in her life journey and a state of peace about her own mortality, is the spiritual aspect to which physicians should attend. For many critically ill patients, however, it is not easy. A 19-year-old with a severe intracranial haemorrhage may benefit from intensive intervention, notwithstanding the significant uncertainty about the functional recovery possible. We may not know her preferences, and the decision may have to be made in the light of ethical principles underlying our duty of care. A discussion in the light of realistic prognoses²⁷ should also preserve hope where possible, allowing us to be attentive and responsive to the patient’s state such that a clinical story endorsing the unique value of the human spirit can emerge. Decisions that reflect the dynamic of the patient’s struggle for life and good or reasonable medical practice both [End Page 298] satisfy the physicians’ duty of care and show respect for the human spirit. The likelihood of achieving an outcome that the patient would regard as worthwhile (substantial benefit) or meaningful must be balanced against the risk of creating an outcome the patient would regard as unacceptable (risk of unacceptable badness or RUB).²⁸ The team undertaking care should do their best not only to make room for the human spirit to manifest itself, but also to find out about the patient’s values and the story that will need to be told whatever happens.²⁹

Survival, non-survival and the third possible outcome—survival of the patient but in a state s/he would consider as unacceptable (RUB)—are marked by uncertainty, but what is real is the journey the patient is tracing. It is sometimes impossible to determine probable outcomes for a patient in the course of rescue care, but doing one’s best and being responsive to “what the patient is showing us” is always achievable. The journey and the emerging story are hampered by poor explanations of outcomes and paths to get there, the guilt that surrounds decisions about EoL care, and the twists and turns as the patient “fights for life”. As a result, the emotions that surface en route can be intense and damaging to all. Attending to what the patient is showing us is both respectful and caring, allowing for sensitivity, assessment, explanation, reassessment and an inclusive discussion of the healthcare journey as it unfolds; most importantly, it avoids creating a misperception of one-sided physician decision-making. It also justifies our claim as clinicians to be “doing our best” or “giving it our best shot” for our patient.

The Duty of Care

The concept of duty of care is derived from the Hippocratic principle that we should “strive to do good for our patients”.³⁰ In clinical practice, it means: “I will use my power to help the sick to the best of my ability and judgment.”³¹ We are obliged to do our best, in terms of accepted and reasonable medical practice that may include respecting the limits of what counts as “an outcome that patients can meaningfully appreciate (not just according to our own beliefs, preferences and judgments). But it does include attending to the responses of that patient as we “do our best” even in extreme situations where success is uncertain.

The duty of care has been underscored in medical ethics traditions in other cultures. In Chinese culture, the ancient idea of yin ai renshu (medicine as the art of humaneness or humanity) has been the most essential norm of professional ethics of medicine (Nie 2011, Ch 12).³² It defines the moral nature [End Page 299] of medicine, or the ultimate moral goal medicine should aim to achieve for individual patients, as well as the wider community and society. It is based on the core moral, political and spiritual concept of ren in Confucianism. The potent term ren has been translated in English variously as “humaneness”, “benevolence”, “perfect virtue”, “goodness”, “human-heartedness”, “love”, “altruism” or “humanity”. In the EoL context, the principle of “medicine as the art of humanity” obliges medical professionals to provide adequate care not only to the body but also to shen, the human spirit involved. Notice that the attentive care that we recommend here is not at all at odds with the idea of a trial of treatment in which we assess the patient’s response to the treatment (both conscious and physiological). The patient might find it all “too much to bear” and the care team involved will have to make a decision sympathetically to the possibly suffering patient involved.

We have no duty to save lives at whatever the cost, but must ensure that our clinical efforts are aimed at supporting a patient in a manner consistent with their beliefs and values, especially in rescue, critical care and EoL settings.³³ The requirements of that duty vary with the medical realities and a trial of treatment is very important in a journey where we let the patient show what s/he can do and we respond accordingly. If, as events unfold, we switch to palliative measures to ensure a “good death”, it can still be an experience that affirms the spirit of the patient, the chance s/he was given and the value of human life.

Seen in this light, a trial of therapy, even if not ultimately successful, is often better than withholding any attempt at treatment. It allows the clinical team to gather further evidence as to the severity of the patient’s condition and to gauge his/her spirit or will to survive—evident, at a minimum, as a biological capacity or incapacity to benefit from interventions. For the family and the patient, our wholehearted but realistic attempt can be of significant benefit in itself with duty of care being seen to be discharged. A trial of treatment therefore can also affirm the human spirit and has both symbolic and practical value by taking the focus off outcomes and uncertain predictions, and refocusing on the patient’s capacity to benefit from what we do. When we explain that the patient must do the real work of recovery and that we are “the support crew”, our duty of care is seen for what it is—we decide and gently help those who care deeply for the patient to see whether or why we should persist with rescue treatment—a shared decision guided by clinical realities in which the patient plays the only role s/he can.

There may be circumstances where a decision not to continue best reflects the clinical reality, for instance, when the risk of unacceptable badness is too [End Page 300] high, as in some cases of decompressive craniectomy.³³ This may also occur if a (competent) patient sees the path ahead and decides that, all things considered, palliation or peaceful passing is best.

Why Responsive Equilibrium Reveals the Right Thing to Do

For many critical patients, the uncertainties make it almost impossible to base clinical judgements on unilateral futility assessments and predictions of outcome. Supporting the patient in a trial of treatment with the option of withdrawal if things unfold in certain ways, fulfils the duty of care but also provides space to be responsive to the human spirit and sensitive to what unfolds during treatment. That attentive mode of care allows EoL decisions to be made with less burden on those who are desperately involved and who will feel the post hoc guilt if positive and true stories are not available to them “after all is said and done”. The approach outlined also helps resolve physicians’ fears of causing death by active intervention in a life-sustaining status quo.³⁴ Three main arguments spring to mind:³⁵

1. 1. Withdrawal of care means that the physician causes the patient’s death because the cessation of treatment by the physician is an act of commission (morally akin to active euthanasia), rather than an omission to act.

Causation has been hotly debated in this area, but a focus on supporting the patient’s life makes it clear to all that it is the underlying disease process and not the treatment or its withdrawal that is the cause of death. We should also note that a trial of treatment to see what the patient can do takes the focus off the judgment of the clinical team about outcomes, which is fraught with uncertainty and may, in fact, deny the patient a chance at life.³⁶

1. 2. Initiating a therapy can be seen as entering into a contract to continue therapy until the patient’s death so that withdrawing therapy is seen as breaking a contract.

This argument reflects inadequate communication by physicians and healthcare teams. In general, a trial of treatment should create clarity for all, if explained in a reasonable way and accompanied by careful, responsive and periodic reevaluation in the light of “what s/he is showing us”. As clinicians, we are always and only obliged to do what has a chance, on the basis of evidence, of producing an outcome that the patient would consider worthwhile but which may not be assessable without a trial of treatment as part of an attentive and [End Page 301] sympathetic regimen of care. This regimen may commit us to withdrawing rather than withholding treatment when things do not go well.³⁷

1. 3. We ought not to embark on treatment that is futile because it wastes precious resources.

The argument is based on misconceptions about futility and often overly sharp assessments of the cost of healthcare. In fact, the cost of a trial of treatment that is stopped if it does not benefit the patient may actually create savings in terms of effective patient care and liability to subsequent litigation. The resources used in such a trial of treatment could perhaps be spent more efficiently, but this should be offset against the significant symbolic value in knowing that we live in a caring society and that we will not be abandoned at the end of life.³⁸ Such a society balances actual healthcare spending against many desiderata (aside from stark clinical efficacy), and a trial of treatment is often a virtuous (or wise) compromise in both affirming and supporting a principle of life—the human spirit—when it is threatened. It means that we can sincerely say to those who care for a patient, “We have given it our best shot but I am afraid s/he cannot make it.”

Conclusion

The unexpected encounter related at the beginning highlighted the human spirit, its resilience in the face of uncertainty and what we should do to support a vague but powerful and intuitive idea that is relevant to decisions when embroiled in End of Life care. Such decisions can often be demanding, especially in the context of a cross-cultural encounter between clinicians and patients and their families. The clinical situation related concerned a trial of treatment and an attentive regard to the patient’s response so that neither the concept of futility nor arguments about probable (and highly uncertain) outcomes influenced events. Differing patient and physician values, our desire to do our best for every patient and the uncertainty inherent in medical practice, all create a climate where physicians and their teams can feel beleaguered. Often significant and very distressing misunderstandings and feelings of abandonment can be engendered in the setting of rescue and treatment at the end of life. However, caring attention to a dynamic and changing clinical reality with a focus on the patient’s spirit and his/her ability (or inability) to respond to our efforts and “show us what s/he can do” allows for a much more inclusive clinical ethos where a sense of life and its value underpins a process of arriving at a responsive equilibrium. [End Page 302]

When the duty of care is interpreted as “giving it your best shot” while making room for the human spirit, it takes into account factors that futility does not. It allows us to discharge our duty of care to our patients and those who support them, to be responsive to our patients’ responses (often seen as their struggle for life) and the moral responses of those who care for them, and to work within a complex and uncertain reality sympathetically and supportively, so as to achieve the best outcome that we can in every sense. In so doing, we help to keep whole (and our hold on) the human spirit in the midst of potential tragedy.