Liminality: The Not-So-New Normal?

Liminality: The Not-So-New Normal?

Editorial. Free Access. Published online 6 April 2022.

Michael A. Ashby

This edition of the Journal of Bioethical Inquiry carries a symposium compiled in honour of the work of a distinguished pioneer of Australian bioethics: Miles Little. As the symposium shows, Little started to work on methods and subjects that seem obvious to us now (the patient experience, the sociology and anthropology of health issues) but this was certainly not fashionable or widely accepted in the 1970s when he started these explorations, especially here in Australia.

One of the central concepts that his work badged and explored is that of liminality: a sort of unstable state between states of relatively greater certainly, being perhaps best seen as the interval (for non-sudden deaths) between “normal” life, due, for example, to a cancer diagnosis, and death. Normal in the sense of an “illusion” of settlement, where finitude is managed by aversion of the gaze as a result of good health, together with varying degrees of financial, social, and emotional security. Security but not necessarily safety, as we can never be completely safe, risks surround us every step of the way. But the relatively low risks throughout long western lives generate an emotional state of provisional reality that makes it very hard when there is a real threat of death.

Provisional reality expresses a state of mind whereby an individual comes to terms with the realities of their situation and the beliefs and assumptions that allow day to day functioning. This state of mind might be constructed from religious belief, social custom, ideological position, and any number of political, social, psychological constructs that soothe anxiety and mask uncertainty. So Little’s work with cancer patients gives voice to the disruption of this provisional state and perhaps exposes us all to the fragile nature of these seemingly settled states that can change in the blink of an eyelid. It is also relatively new in human history for human beings to be so attached to such long and healthy lives, whereas in most histories earthly life is seen as brief and subject to broader spiritual and eternal landscapes.

Epidemiology confronts the safe spaces inhabited for so much of modern life in wealthy developed countries and much of the disease and trauma is self-inflicted. Shocks from infectious disease outbreaks occur from time to time, such as AIDS, influenza mutations, SARS, Ebola, and COVID-19 has definitely brought the reality or threat of death to the whole world, distracting from the marauding chronic disease stalkers such as cancer, dementia, and cardiovascular disease.

Michael Ignatieff puts the whole question of the illusion of human mastery into sharp focus in a passage from his 1994 book about his mother’s dying with dementia,

The real problem, of course, is what we are to think of death. People like us who live by the values of self-mastery are not especially good at dying, at submitting to biological destiny. The modern problem is not death without religious consolation, without an afterlife. The problem is that death makes the modern secular religion of self-development and self-improvement appear senseless. We are addicted to a vision of life as narrative, which we compose as we go along. In fact we didn’t have anything to do with the beginning of the story: we are merely allowed to dabble with the middle; and the end is mostly not up to us at all, but to genetics, biological fate and chance.

So, one view of liminal states is to say that all life is a liminal state, that there is always transition and uncertainty, and that whilst we may live and need to live in states of “settled” provisional reality, where our agency appears to be predominant, in fact this is an illusion that gets us by. For in truth, we are never entirely safe, as anything can strike at any time, and whilst statistically we are relatively safe for large parts of our lives in wealthy countries, we still need to manufacture an emotional state of security to ward off the inevitable and omnipresent terror of loss and death (see Greenberg, Solomon, and Pyszczynski 2015).

The symposium authors draw attention to other pioneering work inspired or done by Little and the evolution of the ethics centre at Sydney University to explore and promote good understanding of values and ethics in medicine and really put these issues on the academic map in Australia. The republication of key original articles and contemporary commentaries will hopefully show the historical significance and continuing relevance of the work. The subject matter is diverse, but the substrate is not, as it is always the patient (or community) experience. The work reveals, for instance, the lived experience of people who have undergone amputations for vascular failure indications and cancer survivorship. Discourse communities are analysed based on the work of M.M. Bakhtin, to show that a dialogue can also generate a subject-other relationship with ethical dimensions and mutual responsibilities. These papers are woven together to form a body of work that made an appeal to patient-centred care, well before the term came into common parlance and listening to patients in planning and improving health systems became de rigeur.

Komesaroff (2022) contests the view that the voices of “mainstream” scientific medicine on the one hand and alternative or complementary medicine on the other, can be reconciled (in the case of the original paper, by Little et al., in a bone marrow transplant programme) as if the intrinsic tension between them represents a problem to be solved. Komesaroff contends that this difference should be seen as a richness that can be mobilized to mutual benefit, that the diversity is a virtue rather than another hurdle to be overcome.

Gallagher (2022) comments on the same paper: “Pragmatic pluralism: Mutual tolerance of contested understandings between orthodox and alternative practitioners in autologous stem cell transplantation,” from a more methodological standpoint about how emotional content is recorded and reported in qualitative research. The paper is seen to illustrate the possibilities for narrative technique and reflection, to include and indeed celebrate the emotional dimension of the patient journey that scientific enquiry struggles to recognize and give space for.

More recently, in 2018, Miles Little published with long-time colleagues Wendy Lipworth and Ian Kerridge, a confronting article for the medical profession entitled “An archeology of corruption in medicine.” They paint a picture of a profession that is socialized in such a way as to promote a variety of behaviours in which those in a privileged and protected profession, until recently almost exclusively self-governing and inward looking, can disregard the interests of others. Commentators Carl Elliott (2022), Kathryn MacKay (2022), and Kathleen Montgomery (2022) use the article to reflect on the corrupting power of a market-driven health system, the danger of social systems, and whether their inherently corruptibility is inevitable, and if so, how to manage it.

David Shaw (2022) gives us another straight-shooting piece about the pandemic, arguing against vaccine hesitancy because the relative risk argument is so weak and involves the weighing up of very low personal risk against broader community dangers of disease and death. Staying with the pandemic, Petrini, Lavazza, and Farina (2022) express concern about the dangers of what they see as the epistemic authority of biomedical experts when making decisions about medical treatment escalation or intensification for people with life threatening COVID-19 infections and also concerning places that influence community immunity. They make a plea for more inclusive decision-making processes so that disenfranchized minorities are treated fairly, a view that few could dispute and hopefully in the longer term, this is happening in health policy systems everywhere. In the process though, it is important with regard to medical decision-making that clinicians are clear that their treatment abatement decisions are based on prognostic clinical experience and evidence, rather than perceived quality of life evaluations, which may be discriminatory and incorrect. It is also important that, especially in crises, that where there is clear and present limitation of resources, such as intensive care places, that those who have the best chance of survival are given priority or rather that those people who have a very low chance of recovery, after say ventilation, are carefully assessed and consulted about treatment escalation that would not normally occur outside the context of a pandemic because of such poor outcomes and attendant suffering. For instance, it is unusual for an elderly nursing home resident to undergo successful intensive care level ventilation except after planned surgery, with excellent preoperative prognostic features.

In the legal Recent Developments column, Carolyn Johnston (2022) considers the evolution of robotic aids in aged care. The picture she paints is a daunting one, as if aged care can’t already be lonely enough, the idea of robots helping out to dress and feed senior citizens may seem Kafkaesque. Nonetheless, fans of science fiction will happily claim that most modern technologies that were described in this genre years ago have come to fruition and that nothing should surprise us. As A.C. Grayling (2021) says, if something can be done, it usually is, particularly if there are economic imperatives such as those operating in aged care. Johnston writes that ethical consequences are inevitable and will need careful scrutiny, which seems reasonable, especially, for instance, given that surveillance technologies are already widely used to prevent falling and wandering for confused residents and patients.

For those who do not currently experience a disability, it is often seems incomprehensible that those who do have one would not want to lessen the impact on their children, such as by surgical cochlear implants for some forms of hereditary deafness (Bradfield 2022) or prevent it altogether through some kind genetic intervention such as CRISPR for disability prevention (Courtright-Lim 2022). These two papers challenge the widely held view that the technical imperative rules and, as Grayling says, if it can be done it should/will be done, that the deployment of these evolving techniques is a “no-brainer,” and that it is irrational and negligent to deprive offspring of the benefits of technology. For the deaf community, the advent of implants has been resisted in a way that the rest of the community finds surprising at best and child neglect at worst. Bradfield points out the divisive impact of cochlear implants is disruptive to the functioning of families and the deaf community and concludes that the decision to implant should reside with parents. These types of judgement in turn fuel a sense for disabled people that their disabled state is seen as lesser than “normal” and therefore they are themselves less worthy. Courtright-Lim (2022) points out that with single gene conditions CRISPR/Cas systems may have some validity and relative safety, but with more complex common conditions, dangers increase. This work reinforces the mission of this journal, to consider ethical issues in a multidisciplinary, holistic way that admits “evidence” from a variety of sources and methodologies, to hopefully more fully understand why people think and act as they do. As we have seen in the COVID-19 pandemic, people who oppose, for instance, vaccine orthodoxy, are seen as anti-scientific and hence illogical, and to be illogical in the modern era can bring on real, even if unintended, discrimination, including at the state level. History is littered with “Luddite” stories, of opposition to technical innovation, usually with the fear of social disruption and loss of community. The march of technical progress has been dominant for a very long time, and benefits are usually the only side of the ledger that is heard. Grinding poverty is pretty awful, and those who live in highly developed wealthier countries enjoy many benefits, and yet at the same time, unhappiness and frank mental illness are endemic and rising everywhere, especially amongst the young. There are it seems, no one-way streets in life and scientific progress.

Yuanyuan Huang, Yali Cong and Zhifeng Wang (2022) discuss two important theoretical underpinning poles concerning advance directives (ADs) for people with dementia. On the one hand, the early pioneers of ADs placed heavy reliance on precedent autonomy, to the extent that there was a proposal for so-called “Ulysses” directives that directed healthcare workers to ignore current wishes in a cognitively disturbed crisis (such as psychosis). So what mattered most was what an individual’s wishes during previous times of normal cognition be the guide to future action when the AD is activated by loss of competence/capacity. However, most instruments and processes now also try to ensure that contemporary wishes can hold sway. This is especially important in dementia care as insight and cognitive capacity vary considerably during these often unpredictable journeys, and competence/capacity can therefore fluctuate and are rarely complete—that is, some decisions can still be made safely despite considerable impairment. So a hard line reliance on precedent autonomy must give way to a “modified defined quality-of-life (QoL) approach” that merges AD and current wishes, and people with dementia should not be inflexibly locked-in to their prior AD.

Lastly, this editor has reviewed (rather belatedly) a 2019 book by Daniel Sperling from Israel about suicide tourism (Ashby 2022). As assisted dying becomes increasingly available due to progressive legislation around the world, it is likely that jurisdictional disparities will continue to exist and that highly motivated (and well-resourced) people will continue to travel to have assistance to die. This book examines the journeys and legislative provisions that both help and hinder such travel. It is perhaps a measure of how strong these desires for assisted dying can be, often for those with chronic neurological conditions. It is noted that most jurisdictions that allow assistance to die have a residency requirement to prevent such travel and that this has been an decisive provision in order to pass such legislation, as those that oppose assisted dying wish to see as much regulation and restriction as possible. Switzerland is the stand out example where no such restitution applies and where assistance does not have to be medically qualified, although the main providers do have qualified staff. It does seem that suicide tourism is objected to by those who oppose assisted dying tout court and that it will be a very limited activity in future for a sub-set of highly motivated people, mainly bound for Switzerland. For most people, it is presumably the wish that, where needed and desired, these provisions are available close to home, to be close to home, family, and community, to say nothing of the expense and very limited availability.

So much of bioethics is concerned with the so-called liminal. Is life just on time’s arrow, a positivistic journey in safety, imbued with personal successes and then shattered from time to time by a grievous loss or threat? Followed then by a return to a “new” normal, one that is once again secure, if not entirely safe, but back to the illusion of self-mastery, that infectious disease or war punctuates for a season before a return to certainty that is itself imaginary? In this and a number of other key areas, Little and his pioneer colleagues in Sydney started asking the right questions in the 1970s with methods that expanded horizons, and somewhat surprisingly to many, put the person as patient back into a picture from which they had been accidentally dislodged by the march of science, the power of professions, and our collective desire to avoid that frightening space: the liminality of finitude. To Miles Little, his colleagues, heirs, and successors, and to all of you, thank you for the ongoing and angling conversation, that in its own way confronts reality and brings comfort via the path of confronting and questioning so many of our common anxieties.


Published online: 6 April 2022. View full article details at the SpringerLink Journal of Bioethical Inquiry site.

Image: Jaroslav Frank