Despair of the Intellect, but Hope of the Heart?

We live in times of great difficulty and anxiety. In the satirical history book 1066 and All That1, history is described as consisting of “one damned thing after another”. And new bad things have indeed been happening one after the other: the pandemic, and now war in Ukraine, to add to climate change and resulting cumulative economic woes, and a profound sense of global malaise and frank anxiety, that these are bad times, even apocalyptic ones. How then are we to face up to the realities of our situations and remain active and positive? When asked about despair in a recent interview, the former Greek finance minister Yanis Varoufakis spoke of maintaining the “pessimism of the intellect and the hopefulness of the heart”2.

Nonetheless there is probably no point in modern history when everything was rosy. Even the relative peace in Europe and its empires of the years before World War One still saw terrible social and economic hardships and ended with the carnage of 1914-1918 and the ensuing influenza pandemic. The post-World War Two recovery and prosperity of the 1950s and 60s was overshadowed by the Cold War nuclear threat of mutual destruction, prolonged racial and political violence in the US, and post-colonial struggles almost everywhere else. The prosperous European industrialist surveying the world and its future in 1900 may have felt a sense of optimism, but little did he know his son would die in the war to end all wars (which of course it did not), or that his country would be swept away by revolution. The mother of the 1960s, having been born into the Great Depression and grown to adulthood in World War Two had higher hopes for her now Baby Boomer children, who actually did quite well overall, but that world had not yet woken up to the damage we were all doing to the planet, nor confronted the deep social divisions and exploitations that underpinned the whole show, and always in the shadow of potential nuclear war.

Rory Stewart and Alastair Campbell recently interviewed the former UK conservative leader and foreign secretary William Hague in their podcast The Rest is Politics (https://twitter.com/RestIsPolitics). They reflected on how much more interesting it is to talk to former politicians than when they were in office, presumably because they can be more honest and say what they really think. And herein lies the real problem for politics, which these two entertaining and thoughtful commentators shine light on: namely that when they tease each other about being too gloomy, they are reminding us, as T.S. Eliot wrote, that: “human kind cannot bear very much reality” (Eliot 1974). So Hague, now out of politics, ends a fairly pessimistic riff on the state of the world by saying he has faith in the extraordinary ability of humankind to find scientific solutions to its problems. And in an earlier interview with former UK prime minister, Tony Blair, we see the same optimism about youth, human ingenuity and technological progress to solve the world’s ills. Just as this writer witnesses every day the resistance to reality in the health system as the dying are treated as if they are curable (with disastrous consequences for everybody), so too this technological optimism sees the world trying to outrun nature. And this is a truly doomed project! Quite simply we will not win. And anybody who dares to say this, or to indicate that there are very difficult times ahead, is branded as negative, as if painting a picture of reality should be avoided because it might upset us, as happens to Rory Stewart in the podcast where his co-host teases him about this absolutely crucial point.

Certainly, the most welcome surprise in the COVID-19 pandemic was the very rapid development and deployment of effective vaccines. Given the global death toll and impacts, it is questionable as to how far ahead of nature humanity managed to stay, but this is surely a good example of unleashed natural forces (by still ill-understood mechanisms) and a global human response to a dire existential threat. Climate change, its economic impacts and the mitigation measures, have plunged the world into prolonged anxiety (and often inertia), as it is far from clear whether this race with natural change will work out to human, and planetary, survival advantage. There is now a comparable state of all-pervasive low-level fear underpinning human existence and politics comparable to that nuclear annihilation fear of the Cold War 1960s. The difference being that nuclear disarmament was more achievable through diplomacy and human action, whereas climate change requires this strategic cooperation at high levels that have not yet been seen, and changes to almost every area of human endeavour, with no guarantee of a favourable outcome. It is here that science and technology come in, where large hopes reside, and for this reason that good ethical scrutiny will be needed as difficult choices are made, and potential innovations are developed within good safety frameworks and effectively monitored. A good example is the argument about nuclear power, attractive for emissions avoidance, but disastrous if it goes wrong.

In this issue of JBI we host a symposium entitled “Ethical, Legal and Social Implications of Emerging Technology”. As explained by the symposium editor, Evie Kendal, in the covering editorial (2022), the challenge of new technology is that it is not reliably possible to know the potential harms or negative consequences, so constructing safe frameworks to ensure bioethical issues are identified and managed is difficult. The Ethical, Legal and Social Implications of Emerging Technologies (ELSIET) research group was established with support from Deakin University’s Science and Society Network in 2018 to study these issues, and shows the benefits of multi-organisation collaboration, involving Swinburne and Melbourne universities, the Western Australia Department of Health, the Gen(e)quality Network and a Brocher Foundation symposium grant. This symposium’s five articles examine various techniques to examine future impacts from this group’s work. Kendal points out that the Precautionary Principle (PP) applied tout court stifles innovation, and excessive caution may mean that true benefits cannot be seen for fear of harms foreseen or often not. On the other hand, just waiting for a negative outcome and compensating victims is also problematic.

In the regular legal column Recent Developments, Neera Bhatia (2022) reports on a case before the Court of Protection of England and Wales. The case centred on the capacity of a teenager with intellectual disability to consent to and undergo renal transplantation. Organ transplantation requires high levels of patient participation, and, frankly, treatment compliance that renders it difficult where capacity is lacking. To be non-discriminatory, it is important for surrogate decision-makers and courts to be mindful of the need for the recipient to be able to understand and cooperate, and also to at least consider how invasive and frightening these procedures are if you do not understand.

There have been bitter differences of opinion about mandatory vaccinations for workers in many occupations, especially in public services, and most of all in health. It is most uncomfortable, or it should be in democracies, to mandate any medical intervention, and there is no doubt that this issue has led to significant social disharmony. Bester (2022) mounts four arguments in favour of there being a duty for health professionals to be vaccinated against COVID-19, and thereby establish a basis for mandating such vaccinations, based on professional duties to avoid transmission in the workplace, to be in good health and thereby be able to work, and as role models for the population. It is questionable however, whether the battles and their legacy were worth it for the small numbers involved, especially as the mandates end and these workers seek re-entry into the workforce at a time of dire shortages of skilled staff.

While autonomy should always be assumed to be the basis of aged care, the idea that autonomy can be continuously expressed and honoured in residential aged care is fanciful as so many residents are there because they have impaired and worsening cognition, executive functioning and consent capacity. So, a great deal of everyday care has to be delivered without formal consent, hopefully in harmony with resident wishes, and with some kind of common-sense interpretation of a person’s best interests (such as responding to basic human needs of hygiene, food and drink). Capacity, or competence, in health is usually now seen as spectral rather than binary. While precedent wishes expressed in advance directives or recalled by next of kin and persons responsible are helpful, differences of opinion can emerge, especially about necessary limitations of medical treatment escalation. Soofi (2022) suggests that principlism after Beauchamp and Childress was formulated for acute care settings where discrete time-limited decisions are required rather than longer term care. It is suggested that modifications, such as a non-binary understanding of intentionality and accounting for precedent autonomy as informative rather than prescriptive, should be considered.

While nobody can deny the pain and impact of suicide in families and communities, this editor has long been troubled by the regimes of truth around suicide and the uber-precautionary approach of health systems about suicide prevention. He recalls a distinguished professor of psychiatry in London saying that occasionally he was relieved to hear of a death by suicide of a patient whose mental suffering was unrelievable despite all efforts. This talk nowadays would probably lead to dismissal, but it does raise the question as to whether all suicides could be prevented. It seems impossible nowadays to accept self-willed death, as if the choice to die somehow devalues life for the rest of us and presents a threat to modern narratives of life and death. Most health systems now operate a safety and quality framework that seems to see every suicide as preventable, and media reporting of suicide transforms the event into a replay of 1950s approach to hidden death and funeral practices. Smith (2022) critiques this zero-suicide approach and calls for a reconsideration of suicide screening that is argued to be part of a paternalism that might actually be counter-productive. Is it not paternalistic, and maybe even a pretentious omnipotence, to assume that health systems can make life worth living when the reasons for ending that life are outside of health’s control, often linked to incurable illness, social isolation, housing, loss of independence, inability to pursue meaningful occupations or hobbies and so on. The health system cannot come and live your life for you, but it behaves as if it has all the answers.

James B. Gould (2022) analyses disability and its framing as difference from those without disability, where the mere physical or sensory difference in Barnes’s Value Neutral Model is not as important as the attendant social injustice in causing negative impacts. He posits that this model does not fit so well for intellectual disability. People with intellectual disability are indeed functionally disadvantaged, but this does not diminish their moral status or entitlements, and no clinical implications flow from such a “bad” difference.

Harwood, Carter and Eliott (2022) present a public health framework for stigma reduction, using weight stigma as a good example of multiple educational and policy interventions that can help people who have attracted negative attention and disadvantage to be better understood in a wider social and service access settings.

Jaime A. Teixeira da Silva (2022) shines a light on what is termed ethics “dumping” whereby less stringent ethics requirements in some poorer jurisdictions are exploited by clinical trials originating in wealthier countries who are seeking more “permissive” environments in which to conduct research.

Anyone trying to run an acute hospital will be familiar with the pressure to discharge patients as soon as possible, including after hours, weekends, public holidays, and therefore also at night. This cannot be done with confidence with older patients, who may struggle with night discharge. Brent Hyslop (2022) writes that while safety concerns must always be addressed, it may be necessary to discharge frail elderly people home at night for access and flow reasons. Hospitals simply cannot wear all their risk at the door to the emergency department, and so a seven-day-a-week hospital may need to discharge at night if, for instance, ambulances are ramped in the street. However, there needs to be better systems in place to ensure that care and support are there in the home, and maybe there needs to be a public health campaign to share the challenges with patients, families and communities, to ensure that they all understand that the acute hospital system cannot be expected to carry all the burdens of an ageing population with ever rising chronic disease burden, dementia and resulting acute episodes of deterioration.

This edition of the JBI, both its general articles and symposium, shows how fearful we are about losing what we have. It is another meditation entirely to ask whether we are bold enough to ask whether what we are defending is worth defending, and whether more radical changes need to be considered for human flourishing. Are modern, high consumption, growth-fueled lives actually happy? If the cost of housing, education and health actually imprison millions of people in modern slavery, just running to stay still, to keep that roof over the head even in the wealthy countries, to say nothing of the rest of the world that still lives with incredible levels of poverty (despite the millions lifted from it as we are told, but into what?), is it not time to ask more fundamental questions? Fear and risk management dominate the world as we try to outrun nature. We see the fear of the precautionary principle alive and well but struggling on all fronts as the genie of human progress refuses to get back in the bottle. Is the role of bioethics to simply to try and manage the fears of the human race, or advocate for fundamental change that mitigates the load we are putting on the planet and each other? Less consumption, less competition, more cooperation, housing cooperatives, free education and health care, population control, recognition of natural limits to life and longevity – and in all this how to preserve individual freedom without coercion or control. And how, as former politicians Blair and Hague and their podcast hosts show, if only those in public life would allow themselves, and be allowed to, speak the truth as they do when they leave office, even if stating the problems can be uncomfortable and unpopular when in office. This is in part a plea for better politics, but there is then surely also a worthy role for bioethics, and therefore organs like the JBI, in this, namely to speak the truth: “The weight of this sad time we must obey,/Speak what we feel, not what we ought to say” (Shakespeare V.iii.323–324)3. And finally, bioethics, and this journal, work mainly through the intellect, but also aspire always to leave room for the heart, that as Varoufakis says, offers hope.