Words/Nga Kupu*
The suggestion of a “Words” column focussing particularly on words from a non-western ethical tradition is great. We are journeying through perilous waters and will need to adapt our ethical framework to the new reality. A value of diversity is that we can draw on concepts from other traditions. Of course, a “Word” in a language you do not speak is of no use. The word is part of a language, which is the embodiment of a culture, and ethics is inevitably culture bound. Even words shared between cultures do not necessarily share exact meanings. A consideration of Justice within the bioethical community culture would be incomplete without reference to Rawls. A consideration of Justice within a Māori community would be centred around Te Tiriti o Waitangi/ The Treaty of Waitangi(1). A simple translation is not enough. The definition of Whakawhanaungatanga is a good starting place, but more depth is needed. It is embedded in a Māori concept of health(2), and the richness of the concepts cannot be appreciated without appreciating the context in which it is used. Whilst it is a Māori word it is now also a New Zealand word. A whole generation of medical students have been taught Māori concepts of health, including Whakawhanaungatanga, significantly spearheaded by the work of Pitama and Lacey(3). Parry as a 5th year student wrote a heart-warming case study that illustrated the value of using these concepts(4). The New Zealand ethical landscape is an example of t...
Words/Nga Kupu*
The suggestion of a “Words” column focussing particularly on words from a non-western ethical tradition is great. We are journeying through perilous waters and will need to adapt our ethical framework to the new reality. A value of diversity is that we can draw on concepts from other traditions. Of course, a “Word” in a language you do not speak is of no use. The word is part of a language, which is the embodiment of a culture, and ethics is inevitably culture bound. Even words shared between cultures do not necessarily share exact meanings. A consideration of Justice within the bioethical community culture would be incomplete without reference to Rawls. A consideration of Justice within a Māori community would be centred around Te Tiriti o Waitangi/ The Treaty of Waitangi(1). A simple translation is not enough. The definition of Whakawhanaungatanga is a good starting place, but more depth is needed. It is embedded in a Māori concept of health(2), and the richness of the concepts cannot be appreciated without appreciating the context in which it is used. Whilst it is a Māori word it is now also a New Zealand word. A whole generation of medical students have been taught Māori concepts of health, including Whakawhanaungatanga, significantly spearheaded by the work of Pitama and Lacey(3). Parry as a 5th year student wrote a heart-warming case study that illustrated the value of using these concepts(4). The New Zealand ethical landscape is an example of the extent to which ethics is culture bound. Whilst traditional ethical principles remain they are increasingly augmented by Māori concepts. The related word Whanaungatanga is one of the principles in “Te Ture Whakaruruhau Code Of Ethical Principles For Public Health in Aotearoa New Zealand”(5). I look forward to further contributions.
* Māori language translation of words.
1. Mutu M. ‘To honour the treaty, we must first settle colonisation’ (Moana Jackson 2015): the long road from colonial devastation to balance, peace and harmony. Journal of the Royal Society of New Zealand. 2019;49(sup1):4-18.
2. Durie M. Whaiora Maori Health Development. Second Edition ed. Melbourne Australia: Oxford University Press; 1998.
3. Lacey C, Huria T, Beckert L, Gilles M, Pitama S. The Hui Process: a framework to enhance the doctor–patient relationship with Māori. Journal of the New Zealand Medical Association. 2011;124(1347).
4. Parry R, Jones B, Gray B, Ingham T. Applying a Māori-centred consultation approach for engaging with Māori patients: an undergraduate medical student case study. Journal of Primary Health Care. 2014;6(3):254-60.
5. Public Health Association of New Zealand Incorporated. Te Ture Whakaruruhau Code Of Ethical Principles For Public Health in Aotearoa New Zealand. Wellington New Zealand2012 [Available from: https://www.pha.org.nz/page-18201.
In their recent article, Jocelyn Downie and Udo Schuklenk conclude, first, that the Canadian experience denies the existence of a 'slippery slope' expanding medical termination from a limited to a broader medical constituency. Second, they argue a faiure to provide social constituents of health and support is a significant factor in the increased requests for 'medical aide in dying.' (1) It is hard to credit their conclusions on either point.
As they note, 2016 legislation legalized 'medical assistance in dying" in cases of serious and incurable illness, disease or disability in an advanced state of decline with death an inevitable and foreseeable conclusion. But as they note (pg. 3-4) new legislation has broadened those criteria to include those with 'disabilities' whose death is not reasonably foreseeable as well as others with chronic, non-progressive disorders including mental illness. Indeed, enui seems to now be an acceptable rational for termination among even those without serious chronic illnesses or disorders. (2)
That is precisely the definition of the slippery slope, a narrow framework of action is broadened to include ever larger classes of peoples.
Similarly, they give short-shirt to the issues of the social constituents of health, ignoring the complex of predicate failures that may lead one to seek a rapid death. These include the limited availability of expert palliative care, the shortage...
In their recent article, Jocelyn Downie and Udo Schuklenk conclude, first, that the Canadian experience denies the existence of a 'slippery slope' expanding medical termination from a limited to a broader medical constituency. Second, they argue a faiure to provide social constituents of health and support is a significant factor in the increased requests for 'medical aide in dying.' (1) It is hard to credit their conclusions on either point.
As they note, 2016 legislation legalized 'medical assistance in dying" in cases of serious and incurable illness, disease or disability in an advanced state of decline with death an inevitable and foreseeable conclusion. But as they note (pg. 3-4) new legislation has broadened those criteria to include those with 'disabilities' whose death is not reasonably foreseeable as well as others with chronic, non-progressive disorders including mental illness. Indeed, enui seems to now be an acceptable rational for termination among even those without serious chronic illnesses or disorders. (2)
That is precisely the definition of the slippery slope, a narrow framework of action is broadened to include ever larger classes of peoples.
Similarly, they give short-shirt to the issues of the social constituents of health, ignoring the complex of predicate failures that may lead one to seek a rapid death. These include the limited availability of expert palliative care, the shortage of hospices across Canada's provinces, and in each provincial health system the limited availability of those resources and the rehabilitative, psychological and social facilities that may make a life lived with chronic conditions meaningful and sustainable.
As a Canadian long engaged in this debate--legal and social--as well as in the care of those with chronic conditions I thus find their arguments incomplete and their conclusions inaccurate. I would, of course, be more than willing to debate their argument in person or in this, or another journal.
Tom Koch
The University of British Columbia, VAncouver, BC, Canada.
Alton Medical Centre, Toronto, ON, Canada.
1. Downie J. and Schudklienk U. Social determinants of health and slippery slopes in
assisted dying debates: lessons from Canada. J Med Ethics 2021. doi:10.1136/medethics-2021-107493.
2. Koch T. Old age alone shouldn’t be considered a justification for physician-assisted death. Globe and Mail 2018 (April 18). https://www.theglobeandmail.com/opinion/article-old-age-alone-shouldnt-b....
The authors argue that when we prioritize healthcare workers for ventilators because of their instrumental value as healthcare workers, we fail to value human lives equally. While they suggest that “it may be ethically justifiable for healthcare workers to receive priority for some scarce healthcare resources” and argue that healthcare workers should have sufficient personal protective equipment (PPE), they do little to explain why granting priority for these resources isn’t also, as they argue with ventilators, a case of failing to attribute equal value to human lives. Indeed, it is not clear that they think prioritizing healthcare workers for vaccines was the right thing to do: “. . . our social fabric has shown signs of unravelling as vaccine roll-outs have pulled on loose threads” and prioritizing vaccines has resulted “in unanticipated frustration, mistrust and strife.” The authors are right in their conclusion about ventilators, but we should reject the concerns their article raises about vaccines and PPE. If saving the most lives is the goal, it is consistent with valuing each person’s life equally to prioritize healthcare workers for preventive measures, particularly at the outset of a pandemic.
The authors mention three reasons ventilators are different from preventive measures like PPE and vaccines: 1) Efficacy: Those who require a ventilator will not return to work quickly. 2) Lifesaving: While ventilators rescue endangered lives, preventive measures only...
The authors argue that when we prioritize healthcare workers for ventilators because of their instrumental value as healthcare workers, we fail to value human lives equally. While they suggest that “it may be ethically justifiable for healthcare workers to receive priority for some scarce healthcare resources” and argue that healthcare workers should have sufficient personal protective equipment (PPE), they do little to explain why granting priority for these resources isn’t also, as they argue with ventilators, a case of failing to attribute equal value to human lives. Indeed, it is not clear that they think prioritizing healthcare workers for vaccines was the right thing to do: “. . . our social fabric has shown signs of unravelling as vaccine roll-outs have pulled on loose threads” and prioritizing vaccines has resulted “in unanticipated frustration, mistrust and strife.” The authors are right in their conclusion about ventilators, but we should reject the concerns their article raises about vaccines and PPE. If saving the most lives is the goal, it is consistent with valuing each person’s life equally to prioritize healthcare workers for preventive measures, particularly at the outset of a pandemic.
The authors mention three reasons ventilators are different from preventive measures like PPE and vaccines: 1) Efficacy: Those who require a ventilator will not return to work quickly. 2) Lifesaving: While ventilators rescue endangered lives, preventive measures only reduce risk. 3) Urgency: Not being prioritized for preventive measures likely means waiting until they become available, while not being prioritized for a ventilator means not receiving one at all. The point about efficacy should be acknowledged as an important difference between ventilators and preventive measures. If healthcare workers qualify for priority for scarce life-saving resources due to their instrumental value in their roles as care providers, and the need for a ventilator indicates an inability to fulfill this role, then healthcare workers requiring ventilators shouldn’t receive priority for those resources over others.
The authors’ commitment to community solidarity leads them to concern about the results of assigning (or worse, reassigning) the last ventilator to a healthcare worker as opposed to someone in equal medical need. However, if prioritizing ventilators for healthcare workers weakens our social fabric, we must ask whether this also applies to preventive measures. Contra the authors’ last two points about differences between ventilators and preventive care: a) preventive care is lifesaving: The life of a nurse forced to face Covid patients without adequate PPE is endangered. b) preventive measures are urgent: If hospitals are overwhelmed and death rates are spiking, those aware of the virus’s danger and the vaccine’s efficacy in January will find only limited comfort in knowing that they might be able to receive the vaccine if they are healthy by May.
Preventive measures are like ventilators in that they are scarce lifesaving medical resources and their use is urgent. Can prioritizing them be justified? The authors follow James Childress in supposing that any justification for their use on the basis of instrumental value carries a “heavy burden of proof.” Childress made his comments in 1970, while grappling with how to approach extremely limited dialysis or organ transplant opportunities. He argued that the burden for straying from randomness or chance as a basis for allocation demands showing not that someone has positive contributions to make, but that they are literally irreplaceable, that disaster would likely result from that person’s loss. However, in the context of a pandemic, this burden of proof is too heavy. It is possible to be instrumental in saving many lives yet still fall short of Childress’ standard.
The most straightforward justification for prioritizing those who save more lives is the multiplier effect, an instance of instrumental value. If we save the life of a life-saver, more total lives are saved. This is evidence not that we value lives unequally—the life-saver’s life isn’t valued more highly—but that we value saving more lives above saving fewer lives. The authors make the point that many workers, not just healthcare workers, have instrumental value. It is true that healthcare workers aren’t alone in having instrumental value (many are instrumental in keeping the economy running or society functioning, for example) and in fact, aren’t the only ones in roles that might save lives. My argument is that if saving the most lives is our primary objective, then prioritizing those we believe will make that possible is consistent with valuing each life equally.
These judgments are context dependent. Decisions must be judged by the information available at the time. At the outset of a pandemic, we are information poor. No one knows whether the infectious agent in question is as contagious as measles or Ebola, how it spreads, or which groups are most at risk. This is difficult because PPE must be stockpiled in advance, and successful planning for mass vaccine allocation/distribution, although it happens later, isn’t last minute either. We must act on our best predictions. For pandemic disease, it is reasonable to assume that healthcare workers will be particularly vulnerable to death and that more lives will be saved if healthcare worker lives are saved. If we later come to have solid evidence that prioritizing housekeepers for vaccines instead of healthcare workers would actually save more lives (not the same as concluding that housekeepers are dying at higher rates, as mentioned in the article), we should adjust our priorities accordingly.
The authors’ account of unravelling social fabric is overblown. Scarcity brings sorrow; there aren’t enough lifesaving resources to go around. However, this is more a reflection of the pandemic’s toll than our decision to save the most lives by prioritizing healthcare workers. The goal is to save the most lives, not a perfect distribution process. Inevitably an imperfect distribution system will lead to the frustration the authors reference. Many will disagree with which goals are primary or how to achieve them. But frustration isn’t failure. When we come to know more, we can do better. Meanwhile, we save the most lives we can.
Tell me now, what would the Doctors and staff do in this situation if there wasn’t a supposed Covid diagnosis?
What is SOP ?
Why couldn’t they just follow that procedure with any and all PPE precautions?
I wouldn’t think they would just throw someone in that condition into a room full of equally suffering patients ?
Do they?
Somebody please explain this to me in Layman’s terms.
If these questions were already answered in the article then let me know, and I’ll do a closer read, but until then.....
The author asserts that coercion to vaccinate is ethically analogous to mandatory seatbelts or the use of physical force to remove a dangerous substance from a child. This is a false analogy. Wearing seatbelts while driving or removing a dangerous toy from a child does not alter anyone’s individual constitution, but vaccines do, permanently, and with largely unknown long-term consequences. Vaccination is an intimate, deeply invasive and permanent medical procedure, not just a behavioural preference. The same flawed comparison could be used to support mandatory abortion or coercive organ harvesting if these procedures were deemed in the interest of public health: a repugnant conclusion.
Regarding seriousness of Covid-19 as a public health issue, the author ignores the fact that Covid-19 deaths are recorded in a non-standard way which precludes meaningful assessment of the true public health impact of this disease in comparison to other respiratory infections. Acording to the WHO https://www.who.int/classifications/icd/Guidelines_Cause_of_Death_COVID-... guidelines, “A death due to COVID-19 is defined for surveillance purposes as a death resulting from a clinically compatible illness [...] COVID-19 should be recorded on the medical certificate of cause of death for ALL decedents where the disease caused, or is assumed to have caused, or contributed to death.” The Office of Nat...
The author asserts that coercion to vaccinate is ethically analogous to mandatory seatbelts or the use of physical force to remove a dangerous substance from a child. This is a false analogy. Wearing seatbelts while driving or removing a dangerous toy from a child does not alter anyone’s individual constitution, but vaccines do, permanently, and with largely unknown long-term consequences. Vaccination is an intimate, deeply invasive and permanent medical procedure, not just a behavioural preference. The same flawed comparison could be used to support mandatory abortion or coercive organ harvesting if these procedures were deemed in the interest of public health: a repugnant conclusion.
Regarding seriousness of Covid-19 as a public health issue, the author ignores the fact that Covid-19 deaths are recorded in a non-standard way which precludes meaningful assessment of the true public health impact of this disease in comparison to other respiratory infections. Acording to the WHO https://www.who.int/classifications/icd/Guidelines_Cause_of_Death_COVID-... guidelines, “A death due to COVID-19 is defined for surveillance purposes as a death resulting from a clinically compatible illness [...] COVID-19 should be recorded on the medical certificate of cause of death for ALL decedents where the disease caused, or is assumed to have caused, or contributed to death.” The Office of National Statistics UK, for example, counts all mentions of Covid-19 on death certificates as Covid-19 deaths, irrespective of whether Covid-19 is the underlying cause of death (see Note 5 in the ONS Spreadsheet). https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarri... Due to this definition ambiguity, it is unclear how many people died from infection with SARS-CoV-19 as the underlying cause. On the other hand, judging by the excess deaths in UK due to respiratory illness, it is doubtful whether anyone would notice that there is a pandemic if not for the associated media campaign and the unprecedented, draconian counter-measures. The fact that Covid-19 is characterised as a serious global threat based on potentially misleading mortality statistics automatically disqualifies any ethical justification of coercive measures to vaccinate against Covid-19, due to potential disagreement about the alleged normative facts. On the other hand, I do agree with the author that mandatory seatbelts to prevent Covid-19 would be ethically permissible, although probably ineffective.
Dear Editor,
having scanned the article by Julian S, philosopher in Oxford no less, in your journal's edition from Nov 2020 , I feel I need to comment: The mandate to prevent harm from others requires a reasonable amount of knowledge what the risk to self is. To use a narrative extract from an autoethnographic case study as example:
... what those people who experienced serious reaction to the covid vaccine are believed to have reacted to is an emulsifier called PEG -
polyethylenglycol which sounds harmless enough. I was tested for allergies comprehensively by a very thorough specialist in Ger in 1996
and that because of a series of very light reactions. I dare to assert that in the UK where I have lived for 20 years and worked in
multidisciplinary health settings, the first thing people would know about such an allergy would be if they suffered an anaphylactic shock.
Prior to that most people would only/at best have been prescribed cortisone.
I believe here enters what M. Fricker, UK philosopher in NY, calls epistemic injustice inherent in a system of health inequalities as prevalent in the UK and an approach to behaviourism in clinical practice I politely call blinkered. - So far my initial reaction to the article.
Coincidentally I then after I found the video interview where Dr Mary Ramsey for PHE declares the safety of vaccines, I felt prompted to do a little research and - surprise, surpri...
Dear Editor,
having scanned the article by Julian S, philosopher in Oxford no less, in your journal's edition from Nov 2020 , I feel I need to comment: The mandate to prevent harm from others requires a reasonable amount of knowledge what the risk to self is. To use a narrative extract from an autoethnographic case study as example:
... what those people who experienced serious reaction to the covid vaccine are believed to have reacted to is an emulsifier called PEG -
polyethylenglycol which sounds harmless enough. I was tested for allergies comprehensively by a very thorough specialist in Ger in 1996
and that because of a series of very light reactions. I dare to assert that in the UK where I have lived for 20 years and worked in
multidisciplinary health settings, the first thing people would know about such an allergy would be if they suffered an anaphylactic shock.
Prior to that most people would only/at best have been prescribed cortisone.
I believe here enters what M. Fricker, UK philosopher in NY, calls epistemic injustice inherent in a system of health inequalities as prevalent in the UK and an approach to behaviourism in clinical practice I politely call blinkered. - So far my initial reaction to the article.
Coincidentally I then after I found the video interview where Dr Mary Ramsey for PHE declares the safety of vaccines, I felt prompted to do a little research and - surprise, surprise: The first academic paper I found, from 2016, states that allergies to PEG are likely underdiagnosed.
See: https://aacijournal.biomedcentral.com/articles/10.1186/s13223-016-0172-7
Would it be fair to say that, given Dr Ramsay's position she could or even should have known of these findings? If at least one of those points is answered in the affirmative, then we have here a situation where, I am inclined to argue, an overcoming of epistemic injustice is actively prevented. Trustworthiness of a public authority rests on credibility, and that, like 'following the science' means in my understanding weighing the evidence one can reasonably have access to - not denying it.
The opinion piece by Savulescu and Cameron[1] is a good reminder of why multidisciplinarity is so important for clinical ethics,[2] and even more so where decisions for older people are concerned. There are so many problematic aspects to this paper it is genuinely difficult to know where to start.
Taking language first, the authors write in a reductionist manner about “the aged” and “the elderly”. These terms are repugnant to older people and the United Nations Human Rights Commission,[3] and ignore the diversity of the older population and the need for individual, and individualised, recommendations. The authors’ comment about not defining “an appropriate cut-off to identify ‘the elderly’” also misses this point. While acknowledging that ethnicity is a proxy for other factors that contribute to poorer outcomes, the authors fail to recognise that age is also such a proxy.
The erroneous and nihilistic “inevitable association between age and deterioration of physical health” seems to be a foundation for flawed arguments. Some older people are in poor health and may be well-advised – not coerced - to stay mainly indoors, avoid unnecessary social contact, and to take outdoor exercise at a safe distance. Others will have a different risk profile or will balance the potential benefits and risks of isolation differently. The assertion that “coercion is used in standard quarantine on the basis of risk of harm to others” does not recognise that people without any com...
The opinion piece by Savulescu and Cameron[1] is a good reminder of why multidisciplinarity is so important for clinical ethics,[2] and even more so where decisions for older people are concerned. There are so many problematic aspects to this paper it is genuinely difficult to know where to start.
Taking language first, the authors write in a reductionist manner about “the aged” and “the elderly”. These terms are repugnant to older people and the United Nations Human Rights Commission,[3] and ignore the diversity of the older population and the need for individual, and individualised, recommendations. The authors’ comment about not defining “an appropriate cut-off to identify ‘the elderly’” also misses this point. While acknowledging that ethnicity is a proxy for other factors that contribute to poorer outcomes, the authors fail to recognise that age is also such a proxy.
The erroneous and nihilistic “inevitable association between age and deterioration of physical health” seems to be a foundation for flawed arguments. Some older people are in poor health and may be well-advised – not coerced - to stay mainly indoors, avoid unnecessary social contact, and to take outdoor exercise at a safe distance. Others will have a different risk profile or will balance the potential benefits and risks of isolation differently. The assertion that “coercion is used in standard quarantine on the basis of risk of harm to others” does not recognise that people without any communicable disease are being quarantined at the moment. Quarantining a perfectly healthy individual to reduce the potential for disease transmission in a population comes at a much higher cost and a much lower benefit to that person.
Indeed, the authors are explicit that the main benefits of the selective isolation of older people they advocate are for others: to allow economic recovery (perpetuating the fallacy that older people are not economically active), participation in social life for the ‘non-elderly’ and to prevent the “consumption of limited resources” by older people. However, they suggest that lockdown will also benefit “the elderly by lowering their chances of dying from COVID-19”. In other words, it’s for their own good because that’s what the rest of society believes.
This risk/benefit analysis is skewed and misleading. It does not adequately consider the potential negative health effects of restriction of mobility, of reduced social contact and, as a result, liberty (a patient recently described their lockdown experience as being “worse than prison”). This is to apply until, as the authors breezily suggest, “there is sufficient herd immunity or a vaccine/treatment emerges”. The concept of deconditioning is an extremely important one in geriatric medicine: that even a short-term decrease in mobility affects muscle strength, to a greater extent in older than younger people.[4] Older people also recover less well from the effects of reduced mobility and so the risk of lasting harm is higher for them.[5] The potential effect of mass deconditioning of older people on healthcare resource utilisation has not been considered in the analysis.
No evidence has been adduced for the statements that older people “pose the greatest risk to society” or “are more likely to place significant strain on limited intensive care resources”, both of which are profoundly ageist viewpoints. The fear of the health service breaking down suffers from a highly restricted view of the broader healthcare system and agnosia to distributive justice: the healthcare system did indeed break down in care homes with an extraordinary excess of deaths.[6]
Instead of a Faustian pact to “allow the elderly to choose not to isolate while also restricting [their] access to health resources, such as ... intensive care”, a more appropriate action would have been for society to have had a conversation about the risks and benefits of locking people down based simply on age. We are not aware of any country that took this route, but many imposed their paternalistic views. We could have supported older people to avoid deconditioning, for example by taking exercise outside at set times during the lockdown, or proposed other imaginative solutions.
In conclusion, this paper overstates the benefits to older people of a lockdown, and understates the risks. Taken to its natural conclusion, Savulescu and Cameron’s thesis might suggest that coercing older people into a lockdown is appropriate and proportional because it keeps healthcare resources free for younger people. The bottom line is that superficial analyses that have not been informed by clinical evidence are dangerous and in any future situation similar to the Covid-19 pandemic, we will have to carefully consider why a misguided effort to “protect” our older population could instead permanently affect health outcomes in a negative manner.
References
1. Savulescu J, Cameron J. Why lockdown of the elderly is not ageist and why levelling down equality is wrong [published online ahead of print, 2020 Jun 19]. J Med Ethics. 2020;medethics-2020-106336. doi:10.1136/medethics-2020-106336
2. Russell C, O'Neill D. Ethicists and clinicans: the case for collaboration in the teaching of medical ethics. Ir Med J. 2006;99(1):25-27.
3. Falconer M, O'Neill D. Out with “the old,” elderly, and aged. Bmj. 2007 Feb 8;334(7588):316
4. Tanner RE, Brunker LB, Agergaard J, et al. Age-related differences in lean mass, protein synthesis and skeletal muscle markers of proteolysis after bed rest and exercise rehabilitation. J Physiol. 2015;593(18):4259-4273. doi:10.1113/JP270699
5. Suetta C, Frandsen U, Mackey AL, et al. Ageing is associated with diminished muscle re-growth and myogenic precursor cell expansion early after immobility-induced atrophy in human skeletal muscle. J Physiol. 2013;591(15):3789-3804. doi:10.1113/jphysiol.2013.257121
6. Graham NSN, Junghans C, Downes R, et al. SARS-CoV-2 infection, clinical features and outcome of COVID-19 in United Kingdom nursing homes [published online ahead of print, 2020 Jun 3]. J Infect. 2020;S0163-4453(20)30348-0. doi:10.1016/j.jinf.2020.05.073
In response to the article by Savulescu & Cameron [1] “Why lockdown of the elderly is not ageist and why levelling down equality is wrong,” we claim that the article presents an ageist approach that may be as harmful or more than the actual virus. In their work, the authors make reference to philosophical, legal, and practical aspects of locking down older adults, as they make the case for the merits of what they refer to as selective isolation. It is our position, as psychologists and gerontologists, that this approach is ageist, and is a disservice to older adults and society at large.
In the initial response to this article, O'Hanlon, O'Keeffe & O'Neill [2], have done a comprehensive job of refuting these claims based on the science that has been coming in regarding the effects of the lockdown on older adults. We wish to contribute another angle – that of the actual preferences and values of older adults themselves. No discourse about any group in society is complete without including this group. Thus, we attempt to abide by the old adage: "Nothing About Us Without Us".
In a recent qualitative study, we explored the personal experiences and preferences of older adults living in CCRCs (continuing care communities) in Israel during the height of the novel Coronavirus pandemic [3]. We were surprised to discover that CCRC residents in different locations in Israel were subjected to significant restrictions, and in many cases were...
In response to the article by Savulescu & Cameron [1] “Why lockdown of the elderly is not ageist and why levelling down equality is wrong,” we claim that the article presents an ageist approach that may be as harmful or more than the actual virus. In their work, the authors make reference to philosophical, legal, and practical aspects of locking down older adults, as they make the case for the merits of what they refer to as selective isolation. It is our position, as psychologists and gerontologists, that this approach is ageist, and is a disservice to older adults and society at large.
In the initial response to this article, O'Hanlon, O'Keeffe & O'Neill [2], have done a comprehensive job of refuting these claims based on the science that has been coming in regarding the effects of the lockdown on older adults. We wish to contribute another angle – that of the actual preferences and values of older adults themselves. No discourse about any group in society is complete without including this group. Thus, we attempt to abide by the old adage: "Nothing About Us Without Us".
In a recent qualitative study, we explored the personal experiences and preferences of older adults living in CCRCs (continuing care communities) in Israel during the height of the novel Coronavirus pandemic [3]. We were surprised to discover that CCRC residents in different locations in Israel were subjected to significant restrictions, and in many cases were not allowed to leave their personal living areas, both before and after the strict lockdown imposed on all Israeli citizens was lifted. Most CCRCs continued some form of lockdown even after Israel began reopening, a measure similar to the one Savulescu & Cameron argue for in their paper. In our in-depth interviews, residents who lived in CCRCs with such strict lockdowns, expressed anger and ongoing distress in the face of the restriction of their liberties and autonomies. Furthermore, a few of them who had personal backgrounds of earlier traumatic experiences in their lives, such as having survived the Holocaust, reported feeling that the current lockdown was reminiscent of being incarcerated and persecuted. Some went so far as to say that they were prisoners of their age, or that they felt in solitary confinement.
Lastly, many described feeling offended by the ageist and paternalistic discourse that took place at the outset of the pandemic in the Israeli media, that they felt was directed at them (statements such as: “older adults will overburden hospitals and take up precious ventilators”). Thus, the mere discussion about “selective isolation” of a segment of the population based solely on their age, is perceived by that population as offensive and disparaging. CCRC residents who felt that decisions to restrict their autonomy were made without consulting them, or that CCRC managements were not forthcoming about the decision-making process, felt even more offended and frustrated.
In this response we argue that healthcare systems may indeed be overburdened by caring for those who are most susceptible to the novel Coronavirus, yet this is attributable to the vulnerability of those very health care systems – systems that, in many developed countries have been neglected for years. Older adults should not pay the price for these underfunded, overburdened healthcare systems. Dismissing the autonomy and sovereignty of selected groups of people is wrong and may have a detrimental impact, which might even exceed the effects of the pandemic itself.
References
1. Savulescu J, Cameron J. Why lockdown of the elderly is not ageist and why levelling down equality is wrong [published online ahead of print, 2020 Jun 19]. J Med Ethics. 2020;medethics-2020-106336. doi:10.1136/medethics-2020-106336
2. O’Hanlon SA, O’Keefe ST, O’Neill D. Older people deserve better than paternalistic lockdown [published online ahead of print, 2020 Jun 19]. J Med Ethics. 2020;medethics-2020-106336.responses
3. Ayalon L, Avidor S. “We have become prisoners of our own age”: From a continuing care retirement community to a total institution in the midst of the COVID-19 outbreak. Unpublished manuscript.
Abstract
Bunnik et al and Schmitz interchange about the public funding of NIPT surprisingly lacks consideration of Wilson’s and Jungner’s classic principles of screening as well as broader issues relating to women’s autonomy. In addition, overall healthcare costs must be considered no matter the system of their financing (public purse, private insurance or direct cost to families).
I have followed the interchange between Bunnik et al and Schmitz [1 – 3] because NIPT is a topic I have published on for 5 years now, most recently in English [4].
The most important reason for making NIPT publicly funded and for it to replace First Trimester Combined (FTC) in screening is that NIPT is a much better test than FTC [4]. According to the principles laid down by Wilson and Jungner in their classic essay [5], in this situation screening should be done with a test with as low a false negativity as possible so that the pregnant can truly trust the message that she does not carry a foetus with a genetic abnormality. NIPT misses far fewer cases than FTC and is a classic rule-out test.
Where it has been studied, the biggest unease with NIPT among pregnant women is the risk of sex-selection, that is that female foetuses are selectively aborted only because they are female [4, 6, 7]. Notwithstanding, Schmitz raises the spectre of “unease with NIPT causing discriminatory mes...
Abstract
Bunnik et al and Schmitz interchange about the public funding of NIPT surprisingly lacks consideration of Wilson’s and Jungner’s classic principles of screening as well as broader issues relating to women’s autonomy. In addition, overall healthcare costs must be considered no matter the system of their financing (public purse, private insurance or direct cost to families).
I have followed the interchange between Bunnik et al and Schmitz [1 – 3] because NIPT is a topic I have published on for 5 years now, most recently in English [4].
The most important reason for making NIPT publicly funded and for it to replace First Trimester Combined (FTC) in screening is that NIPT is a much better test than FTC [4]. According to the principles laid down by Wilson and Jungner in their classic essay [5], in this situation screening should be done with a test with as low a false negativity as possible so that the pregnant can truly trust the message that she does not carry a foetus with a genetic abnormality. NIPT misses far fewer cases than FTC and is a classic rule-out test.
Where it has been studied, the biggest unease with NIPT among pregnant women is the risk of sex-selection, that is that female foetuses are selectively aborted only because they are female [4, 6, 7]. Notwithstanding, Schmitz raises the spectre of “unease with NIPT causing discriminatory messages especially about Down’s syndrome and those being obviously distressing” [2]. Sometimes it feels like special interest groups have hijacked the debate at the expense of women’s autonomy [4].
The current Covid-19 pandemic has stressed the healthcare systems to breakpoint in most if not all countries affected and in some even beyond. The pandemic has not only meant that large resources has had to be put into Covid-19 but it has caused financial chaos with bankruptcies and reduced incomes. Companies are struggling to survive. We thus have a reduced tax base at the same time as tax money must be redirected to get the economy back on its feet. The reality which we live in is that there is a limit to what percentage of GDP but also absolute money a country can spend on health care. Before the pandemic most European countries spent 10 – 12 % of their GDP on health care with the USA as an outlier at 18 %, while 50 years ago it was only about 6 – 7 %. The absolute sums are probably more important than the percentages because certain costs, such as medicines and instruments, are becoming more and more uniform throughout the world.
Bunnik et al are correct in justifying “public funding of NIPT because it will save the public money” [3]. Three studies – one each from Mexico, South-Korea and the USA [4, 8, 9, 10] – confirm the substantial financial aspects of managing Down’s syndrome. In healthcare systems where the costs directly hit the families, they can be ruinous. In systems where the tax-payers defray this cost we can expect to find an increased resistance to such expenses. This attitude will have been exacerbated in the path of the current Covid-19 pandemic.
In short, in countries with limited resources or where costs of care fall on the individuals and their families, it is pressing to introduce fine rule-out tests.
References:
1. Bunnik EM, Kater-Kuipers A, Galjaard RH, de Beaufort ID. Should pregnant women be charged for non-invasive prenatal testing? Implications for reproductive autonomy and equal access. J Med Ethics. 2020 Mar; 46(3):194-8. doi: 10.1136/medethics-2019-105675.2019.
2. Schmitz D. Why public funding for non-invasive prenatal testing (NIPT) might still be wrong: a response to Bunnik and colleagues. J Med Ethics 2019; doi: 10.1136/medethics-2019-105885
3. Bunnik EM, Kater-Kuipers A, Galjaard RH, de Beaufort ID. Why NIPT should be publicly funded. J Med Ethics 2020; doi: 10.1136/medethics-2020-106218
4. Breimer LH. Non-invasive prenatal testing: Special interest groups vs women’s autonomy. Ind J Med Ethics 2020; Published online on June 20, 2020. DOI:10.20529/IJME.2020.069.
5. Wilson JMG, Jungner G. Principles and practice of screening for disease. Geneva: World Health Organization; Public Health Paper 34. 1968. Pp 163.
6. Vanstone M, Cernat A, Nisker J, Schwartz L. Women's perspectives on the ethical implications of non-invasive prenatal testing: a qualitative analysis to inform health policy decisions. BMC Med Ethics. 2018 Apr 16;19(1):27-39.
8. Park GW, Kim NE, Choi EK, Yang HJ, Won S, Lee YJ. Estimating nationwide prevalence of live births with Down syndrome and their medical expenditures in Korea. J Korean Med Sci 2019 aug 12[cited2020 May 12]; 34(31):e207. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6689486/
9. Martínez-Valverde S, Salinas-Escudero G, García-Delgado C, Garduño-Espinosa J, Morán-Barroso VF, Granados-García V, et al. Out-of-pocket expenditures and care time for children with Down syndrome: A single-hospital study in Mexico City. PLoS ONE. 2019 Jan 10 [cited 2020 May 12]; 14(1): e0208076. Available from: https://doi.org/10.1371/journal.pone.0208076
10. Kageleiry A, Samuelson D, Duh MS, Lefebvre P, Campbell J, Skotko BG. Out-of-pocket medical costs and third-party healthcare costs for children with Down syndrome. Am J Med Genet A. 2017 Mar; 173(3):627-37.
Declaration of interest: The author reports no conflicts of interest. The author alone is responsible for the content and writing of the paper. This work was written independently; no company or institution supported the author financially or by providing a professional writer.
Lars H Breimer, MA PhD, BM BCh, FRCPath, Dip Pharm Med
Örebro University Institution for Medical Sciences
School of Health and Medical Sciences
Dept of Laboratory Medicine, Clinical Chemistry division
Örebro University Hospital
SE-701 85 Örebro, Sweden
Tel: + 46 19 602 78 17 mobile: + 46 705 827 817
e-mail: lars.breimer@regionorebrolan.se
Words/Nga Kupu*
Show MoreThe suggestion of a “Words” column focussing particularly on words from a non-western ethical tradition is great. We are journeying through perilous waters and will need to adapt our ethical framework to the new reality. A value of diversity is that we can draw on concepts from other traditions. Of course, a “Word” in a language you do not speak is of no use. The word is part of a language, which is the embodiment of a culture, and ethics is inevitably culture bound. Even words shared between cultures do not necessarily share exact meanings. A consideration of Justice within the bioethical community culture would be incomplete without reference to Rawls. A consideration of Justice within a Māori community would be centred around Te Tiriti o Waitangi/ The Treaty of Waitangi(1). A simple translation is not enough. The definition of Whakawhanaungatanga is a good starting place, but more depth is needed. It is embedded in a Māori concept of health(2), and the richness of the concepts cannot be appreciated without appreciating the context in which it is used. Whilst it is a Māori word it is now also a New Zealand word. A whole generation of medical students have been taught Māori concepts of health, including Whakawhanaungatanga, significantly spearheaded by the work of Pitama and Lacey(3). Parry as a 5th year student wrote a heart-warming case study that illustrated the value of using these concepts(4). The New Zealand ethical landscape is an example of t...
In their recent article, Jocelyn Downie and Udo Schuklenk conclude, first, that the Canadian experience denies the existence of a 'slippery slope' expanding medical termination from a limited to a broader medical constituency. Second, they argue a faiure to provide social constituents of health and support is a significant factor in the increased requests for 'medical aide in dying.' (1) It is hard to credit their conclusions on either point.
Show MoreAs they note, 2016 legislation legalized 'medical assistance in dying" in cases of serious and incurable illness, disease or disability in an advanced state of decline with death an inevitable and foreseeable conclusion. But as they note (pg. 3-4) new legislation has broadened those criteria to include those with 'disabilities' whose death is not reasonably foreseeable as well as others with chronic, non-progressive disorders including mental illness. Indeed, enui seems to now be an acceptable rational for termination among even those without serious chronic illnesses or disorders. (2)
That is precisely the definition of the slippery slope, a narrow framework of action is broadened to include ever larger classes of peoples.
Similarly, they give short-shirt to the issues of the social constituents of health, ignoring the complex of predicate failures that may lead one to seek a rapid death. These include the limited availability of expert palliative care, the shortage...
The authors argue that when we prioritize healthcare workers for ventilators because of their instrumental value as healthcare workers, we fail to value human lives equally. While they suggest that “it may be ethically justifiable for healthcare workers to receive priority for some scarce healthcare resources” and argue that healthcare workers should have sufficient personal protective equipment (PPE), they do little to explain why granting priority for these resources isn’t also, as they argue with ventilators, a case of failing to attribute equal value to human lives. Indeed, it is not clear that they think prioritizing healthcare workers for vaccines was the right thing to do: “. . . our social fabric has shown signs of unravelling as vaccine roll-outs have pulled on loose threads” and prioritizing vaccines has resulted “in unanticipated frustration, mistrust and strife.” The authors are right in their conclusion about ventilators, but we should reject the concerns their article raises about vaccines and PPE. If saving the most lives is the goal, it is consistent with valuing each person’s life equally to prioritize healthcare workers for preventive measures, particularly at the outset of a pandemic.
Show MoreThe authors mention three reasons ventilators are different from preventive measures like PPE and vaccines: 1) Efficacy: Those who require a ventilator will not return to work quickly. 2) Lifesaving: While ventilators rescue endangered lives, preventive measures only...
This study, https://doi.org/10.1126/scitranslmed.3006175, showed that the placebo effect still worked when patients were informed that they were receiving the placebo.
If this is generally true, there is no need to move from honesty.
Tell me now, what would the Doctors and staff do in this situation if there wasn’t a supposed Covid diagnosis?
What is SOP ?
Why couldn’t they just follow that procedure with any and all PPE precautions?
I wouldn’t think they would just throw someone in that condition into a room full of equally suffering patients ?
Do they?
Somebody please explain this to me in Layman’s terms.
If these questions were already answered in the article then let me know, and I’ll do a closer read, but until then.....
Thank You
The author asserts that coercion to vaccinate is ethically analogous to mandatory seatbelts or the use of physical force to remove a dangerous substance from a child. This is a false analogy. Wearing seatbelts while driving or removing a dangerous toy from a child does not alter anyone’s individual constitution, but vaccines do, permanently, and with largely unknown long-term consequences. Vaccination is an intimate, deeply invasive and permanent medical procedure, not just a behavioural preference. The same flawed comparison could be used to support mandatory abortion or coercive organ harvesting if these procedures were deemed in the interest of public health: a repugnant conclusion.
Regarding seriousness of Covid-19 as a public health issue, the author ignores the fact that Covid-19 deaths are recorded in a non-standard way which precludes meaningful assessment of the true public health impact of this disease in comparison to other respiratory infections. Acording to the WHO https://www.who.int/classifications/icd/Guidelines_Cause_of_Death_COVID-... guidelines, “A death due to COVID-19 is defined for surveillance purposes as a death resulting from a clinically compatible illness [...] COVID-19 should be recorded on the medical certificate of cause of death for ALL decedents where the disease caused, or is assumed to have caused, or contributed to death.” The Office of Nat...
Show MoreDear Editor,
Show Morehaving scanned the article by Julian S, philosopher in Oxford no less, in your journal's edition from Nov 2020 , I feel I need to comment: The mandate to prevent harm from others requires a reasonable amount of knowledge what the risk to self is. To use a narrative extract from an autoethnographic case study as example:
... what those people who experienced serious reaction to the covid vaccine are believed to have reacted to is an emulsifier called PEG -
polyethylenglycol which sounds harmless enough. I was tested for allergies comprehensively by a very thorough specialist in Ger in 1996
and that because of a series of very light reactions. I dare to assert that in the UK where I have lived for 20 years and worked in
multidisciplinary health settings, the first thing people would know about such an allergy would be if they suffered an anaphylactic shock.
Prior to that most people would only/at best have been prescribed cortisone.
I believe here enters what M. Fricker, UK philosopher in NY, calls epistemic injustice inherent in a system of health inequalities as prevalent in the UK and an approach to behaviourism in clinical practice I politely call blinkered. - So far my initial reaction to the article.
Coincidentally I then after I found the video interview where Dr Mary Ramsey for PHE declares the safety of vaccines, I felt prompted to do a little research and - surprise, surpri...
The opinion piece by Savulescu and Cameron[1] is a good reminder of why multidisciplinarity is so important for clinical ethics,[2] and even more so where decisions for older people are concerned. There are so many problematic aspects to this paper it is genuinely difficult to know where to start.
Taking language first, the authors write in a reductionist manner about “the aged” and “the elderly”. These terms are repugnant to older people and the United Nations Human Rights Commission,[3] and ignore the diversity of the older population and the need for individual, and individualised, recommendations. The authors’ comment about not defining “an appropriate cut-off to identify ‘the elderly’” also misses this point. While acknowledging that ethnicity is a proxy for other factors that contribute to poorer outcomes, the authors fail to recognise that age is also such a proxy.
The erroneous and nihilistic “inevitable association between age and deterioration of physical health” seems to be a foundation for flawed arguments. Some older people are in poor health and may be well-advised – not coerced - to stay mainly indoors, avoid unnecessary social contact, and to take outdoor exercise at a safe distance. Others will have a different risk profile or will balance the potential benefits and risks of isolation differently. The assertion that “coercion is used in standard quarantine on the basis of risk of harm to others” does not recognise that people without any com...
Show MoreIn response to the article by Savulescu & Cameron [1] “Why lockdown of the elderly is not ageist and why levelling down equality is wrong,” we claim that the article presents an ageist approach that may be as harmful or more than the actual virus. In their work, the authors make reference to philosophical, legal, and practical aspects of locking down older adults, as they make the case for the merits of what they refer to as selective isolation. It is our position, as psychologists and gerontologists, that this approach is ageist, and is a disservice to older adults and society at large.
Show MoreIn the initial response to this article, O'Hanlon, O'Keeffe & O'Neill [2], have done a comprehensive job of refuting these claims based on the science that has been coming in regarding the effects of the lockdown on older adults. We wish to contribute another angle – that of the actual preferences and values of older adults themselves. No discourse about any group in society is complete without including this group. Thus, we attempt to abide by the old adage: "Nothing About Us Without Us".
In a recent qualitative study, we explored the personal experiences and preferences of older adults living in CCRCs (continuing care communities) in Israel during the height of the novel Coronavirus pandemic [3]. We were surprised to discover that CCRC residents in different locations in Israel were subjected to significant restrictions, and in many cases were...
Medethics-2020-106709 – see decision 23-July-2020
NIPT is the only ethical test
Abstract
Bunnik et al and Schmitz interchange about the public funding of NIPT surprisingly lacks consideration of Wilson’s and Jungner’s classic principles of screening as well as broader issues relating to women’s autonomy. In addition, overall healthcare costs must be considered no matter the system of their financing (public purse, private insurance or direct cost to families).
I have followed the interchange between Bunnik et al and Schmitz [1 – 3] because NIPT is a topic I have published on for 5 years now, most recently in English [4].
Show MoreThe most important reason for making NIPT publicly funded and for it to replace First Trimester Combined (FTC) in screening is that NIPT is a much better test than FTC [4]. According to the principles laid down by Wilson and Jungner in their classic essay [5], in this situation screening should be done with a test with as low a false negativity as possible so that the pregnant can truly trust the message that she does not carry a foetus with a genetic abnormality. NIPT misses far fewer cases than FTC and is a classic rule-out test.
Where it has been studied, the biggest unease with NIPT among pregnant women is the risk of sex-selection, that is that female foetuses are selectively aborted only because they are female [4, 6, 7]. Notwithstanding, Schmitz raises the spectre of “unease with NIPT causing discriminatory mes...
Pages