Michael A. Ashby

Editorial. Free Access. Published online: 2 February 2023.

The death of the British sovereign, the longest serving head of state in history as far as we know, commanded global media attention for many days, and paralysed the United Kingdom for at least a fortnight. Profound admiration was expressed for her unswerving commitment to serve “be her life short or long” her country and a commonwealth of nations. Whatever the views about the monarchy, either for the United Kingdom or other commonwealth countries who still have it as their head of state, the moral authority accrued is clear and almost universally admired. Although it was hard to think differently, still less express it (see the recently deceased Ian Jack in Granta after Diana’s death; “Those Who Thought Differently”) (Jack and Marlow 1997), it does seem odd, and poor timing too, to question the monarchy as an institution based on the death of a worthy individual, and very unfair to the successor. There are surely better arguments for a republic, but this is a bioethics journal, not primarily a political one.

However, for the health and bioethics literature, where so much angst about death and dying takes place, as the world saluted the many fine qualities of Queen Elizabeth II, there is also something important to understand from the process of her dying. Apart from the fact that in public discourse and the media, we definitely now “pass away” rather than die, as if this term is some kind of softening of the finality of death, it was the “shock” expressed by the new U.K. prime minister, and a number of other commentators, that merits further examination.

How can it be that the death of a 96-year-old woman is a shock? Many people reflected that she had appeared briefly at the changeover of prime ministers only days beforehand and appeared to be in good spirits, albeit obviously frail. So, on the one hand, there is the shock of a much-anticipated event finally occurring, a reference to the emotional impact of something foreseen being actualized, anticipated grief becoming real. On the other is the disbelief that having sworn in a new prime minister one day, it was possible for her to die a few days later. And yet it is this surprise that is the lesson, because the queen died a very modern death, in a manner that is still poorly understood in the community and even within the health professions themselves.

We do not know the private medical information of the actual death and dying process, so some speculation is involved. Her dying process had, in all probability, been well underway for at least a year, and she was manifesting all the signs of the frailty of extreme old age. The clue was in the repeated palace statements about the queen being unable to attend in person due to “mobility issues.” So instead of clear major fatal events such as heart attack, stroke, and cancer, that are well understood as causing death, it is now common for people in old age to die slowly, often over one to two years, with decreasing muscle mass and diminishing bone and joint function. It is perhaps a surprise to many that it is your so-called musculoskeletal system, starting with the aches and pains of ageing, that will eventually be a major contribution to your dying process. Mercifully, her majesty appears to have been spared dementia, the other major contributor to this modern dying process.

This frailty of old age is being increasingly recognized as a medical entity, as hospitals are now becoming overwhelmed everywhere with emergency attendances due to its effects. Like the duck on water that appears to be gliding along a calm lake yet underneath the legs are paddling hard, the human constitution is working overtime to just keep going, and the least additional stress may bring the whole system crashing down—although very commonly the final game changer event will be a fall.

It is common for this palliative care doctor to have this sort of explanatory conversation, including the duck analogy, typically with the initially disbelieving baby boomer children of the apparently sudden imminent dying of a much-loved frail elderly parent.

So maybe in an era where medical progress can contribute so much, it will be a surprise to know that it is our muscles, bones, and joints that will be the Achilles heel. And maybe amongst the tributes to all the fine human and spiritual qualities of the late queen, there was another lesson: this is how most of us, in a world of unprecedented longevity, will die: a slow dwindling, gradually, then suddenly, causing shock to those around us because our frailty was not seen for what it actually is: the beginning of the end.

Finally, it was so refreshing to see her death certificate, as a public document, stating her cause of death as “Old Age.” Doctors are usually instructed not to write this on a death certificate. In this reductionist age, every death must have a forensic cause. Is it for biostatistics, or regulatory tidiness, that you need a clear reason to exit the world of the living? Families often have funeral arrangements disrupted by difficulties in obtaining death certificates for out of hospital deaths (it can be hard these days to find a doctor who knows the patient well enough due to GP shortages) and/or coronial procedures because of a fall. In an era when multiple chronic diseases are the norm for elderly people it can be difficult to determine which of them was the decisive cause. For many of us, just “running out of road” might just be enough information, lest the bureaucracies and procedures of our modern world continue to harass us into the next. All of these things send a message that death is anything but “normal” and can only make the process harder to deal with for everyone. Kellehear proposed a health promotion approach to improving care and decision-making. Although to some this might sound like an oxymoron, he pointed out that if you want to improve “death-ways,” it is necessary to use well tested public health methods to change public and health system attitudes (Kellehear 1999). Part of the task is to reorientate systems to be death-friendly rather than increased procedural hassles that send a covert message that if death occurs something has gone wrong. Current trends in safety and quality, accreditation, and coronial procedures all send unsettling signals that death should be prevented and this in turn promotes cautious over-treatment and medicalization.

Bioethics is sometimes caricatured as being about the beginning and end of life (alpha to omega), with less to say about the middle part of life. If we start at the beginning in this issue, four papers deal with our origins.

The limits of autonomy are always up for debate. In what is known as the open future principle, rights that autonomous adults can enjoy should be protected for children until they are autonomous adults, and it has been suggested that these rights be extended to the unborn fetus. Gregg (2022) argues for a right to freedom from disability and against prohibitions of genetic selection and thus pits parental procreative autonomy against that of the potentially disabled future person. Wienmeister (2022) considers Habermas’s approach to genetic engineering and how this incorporates social aspects of character formation and how his work can be ethically read to provide an existential level of sense making.

Chańska and Grunt-Mejer (2022) study the principle of nondirectiveness in Polish genetic counselling with a mixed methods study that used case scenarios. The authors analyse the prevailing legal and social context in Poland to explain their findings in which responses to the scenarios did not match the principle. The idea that clinical practice is devoid of guidance is fanciful, maybe it is more realistic to say that a degree of paternalism in health encounters is permissible provided that the patient sets the balance, especially in circumstances of high vulnerability. It is reasonable to ask a practitioner what they recommend in a given situation, the patient does not have to agree. The key is that the power balance is negotiated in such a way that the patient determines where that balance lies, questions are answered and discrimination, judgement, and coercion of any sort are absent. As the authors point out, culture and attitudes play a big part here.

Kvernflaten, Fedorcsák, and Solbrække (2022) report on an ethnographic study that explores Norwegian couples’ views and feelings about the fate of their IVF created embryos. So, pre-implantation use for research is more acceptable than donation to another couple is more difficult as the liminality of the embryo changes to become human life and becomes thereby potential kin.

Arham et al. (2022) discuss the pros and cons of introducing genetically modified mosquitoes into Malaysian forests to control dengue fever. Bokek-Cohen and Tarabeih (2022) study and discuss the level of knowledge about religious positions on the use of porcine tissues in medical products in Muslim and Jewish populations. They point out the importance of considering this in informed consent processes where porcine derived products may be needed. Nielsen and Kongsholm (2022) present the case for a trust-based consent process for future potential uses of biobank genetic samples.

There are two COVID-19 articles in this issue. Lederman and Halberthal (2022) write about the conflict between hygiene for COVID-19 safety and religious traditions of facial hair preservation. Using arguments from Islamic jurisprudence, they come to the conclusion that shaving facial hair to care for COVID-19 patient safety can be permissible in that tradition. Beriain and Rueda (2022) present arguments in favour of COVID-19 certificates as immunity passports, provided data protection, equity, and global fairness conditions are adequately addressed.

Fiske and McLennan (2022) report a large study (N=964) of German, Swiss, and Austrian ethics and humanities academics concerning various types of diversity. They found reasonable gender parity but less attention to race and other inequalities.

De Block, Delaere, and Hens (2022) write that research ethics deliberations should include philosophical considerations, and this might have prevented a case of unethical transplants in Sweden.

Riley and Sarbey (2022) make the radical proposal that all restrictions on medical assistance in dying should be removed, and they reject the usual slippery slope arguments. They state that such freedom would not be dangerous and that the restrictions are only set to prevent a potential danger of an undesired early death.

Like most of our issues there is a strong slant towards “first world” problems. Mussie and colleagues (2022), a collaboration of writers from Switzerland, Addis Ababa, and Quebec consider the origins, history, and challenges of bioethics in Ethiopia. Nothing is easy in the horn of Africa, and the authors acknowledge the struggles with poverty, infectious diseases, and all sorts of vulnerabilities attributable to gender, ethnicity, and war. Despite the devastating impacts of civil war and ethnic conflict, the authors also draw our attention to long established and sometimes ancient ethical wisdom and innovations in community health provision.

We have all too few correspondences in our columns, so it is good to see two letters to the journal concerning critical incident debriefing in health settings. Skowronski and Kerridge (2022) respond to a previous JBI article by Delany et al. (2022) in which they described CISD (Critical Incident Stress Debriefing) experience in a tertiary setting, and the original authors in turn respond too. These authors had reported on an integrated psychodynamic and ethical approach, perhaps somewhat analogous to integrated supervision practices exemplified by author such as Shohet and Hawkins (2000). Skowronski and Kerridge point out the pitfalls of assuming that CISD is an assumed intrinsic good, that harms may occur, and the skill sets of ethics and psychodynamics are separate. Readers will make up their own minds about these relative arguments. We have long known that it is questionable whether debriefing reduces future psychological morbidity (Raphael et al. 1995), but we also know that participants report very high levels of satisfaction with and gratitude for such support after traumatic events, and we do take all of ourselves everywhere. As with any intervention, skill, experience, and acknowledgement of limitations and harms are needed.

In the regular legal Recent Developments column, Chris Maylea (2022) assesses the new Mental Health and Wellbeing Act in the Australian state of Victoria. He starts by acknowledging the horrendous length of the act—686 pages—and laments that it is still not going to be fully human rights compliant. The law was a response to a 2021 royal commission that gave yet another damning assessment of that state’s mental health services, a state of affairs that no doubt exists in many comparable jurisdictions. In an era when there is so much mental health suffering, and so many people with either temporary or permanent loss of capacity, it must be demoralizing for those who do work in the sector to have so much negativity, especially as demand keeps outpacing resources. They must wonder what these commissioners and law makers really know of managing these awful situations. By all means call out abuses and poor care but this clinician for one is very glad not to have to navigate through a nearly 700 page act every day at work. Do we really look at the societal causes of some of these problems? Is ever expanding law and regulation going to make hearts and minds any better? When we will we at least consider that perhaps we are drowning in rules, procedures, and trying to legislate for every possible contingency? And have we finally abandoned the common law casuistry for continental codification?

White, Wilmott, and Close (2022) also address regulation issues, but in end-of-life care, which they argue to be flawed as it is so siloed into ethics, law, guidelines, training, and funding programmes. There is no doubt that perceptions (not always correct as this group has already pointed out, White et al. 2014) of what the law requires can lead to defensive over-medicalization of the dying process and compromise on symptom control. There is also a tendency for overly legalistic advance directive instruments to be shunned by the public and to therefore be of limited relevance to patient care and decision-making. Their plea for a holistic approach is timely and will no doubt be welcomed by those involved in provision of palliative care who are too often faced with policy and law initiatives that miss the point. Most of all, medicine, ethics, and law need to recognize that there is a dying process, that once recognized and acknowledged, does not require the dying to be treated as if they are curable. Integrated holistic health-promotion type interventions are needed (see Kellehear above) to help medicine and society to deal better with care and decision-making at the end of life.

References

• Arham, A.F., N.A. Hasim, M.I. Mokhtar, et al. 2022. The lesser of two evils: Application of Maslahah-Mafsadah criteria in Islamic ethical-legal assessment of genetically modified mosquitoes in Malaysia. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10216-5.
• Bokek-Cohen, Y., and M. Tarabeih. 2022. The use of porcine-derived materials for medical purposes: What do Muslim and Jewish individuals know and opine about it? Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10203-w.
• Chańska, W., and K. Grunt-Mejer. 2022. The directiveness that dare not speak its name. Views and attitudes of Polish clinical geneticists toward the nondirectiveness principle. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10202-x
• de Block, A., P. Delaere, and K. Hens. 2022. Philosophy of science can prevent manslaughter. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10198-4
• Delany, C., S. Jones, J. Sokol, L. Gillam, and T. Prentice. 2022. Expertise and knowledge required to support health staff to manage stressful events. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10207-6.
• Fiske, A., and S. McLennan. 2022. Diversity in German-speaking medical ethics and humanities. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10215-6.
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• Mussie, K.M., B.S. Elger, M. Kaba, F. Pageau, and I. Wienand. 2022. Bioethical implications of vulnerability and politics for healthcare in Ethiopia and the ways forward. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10210-x.
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• Nielsen, M.E.J., and N.C.H. Kongsholm. 2022. Blanket consent and trust in the biobanking context. Journal of Bioethical Inquiry 19(4). https://doi.org/10.1007/s11673-022-10208-5.
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Published online: 2 February 2023. View full article details at the SpringerLink Journal of Bioethical Inquiry site. Find the complete 1942) issue here.

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