I agree that personal autonomy does not of itself invalidate medical mandates.
I note that I do not conclude that vaccine mandates are wrong just because they violate body autonomy of vaccine refusers. Rather, ‘mandatory vaccination, immunity passports, or any other form of discrimination on the basis of the vaccination status are defeasible not because they limit basic freedoms and rights but because they discriminate against (and thus devalue) the innate constitution of all human beings.’ Moreover, the premise that vaccine mandates are justified by the value of human autonomy is logically inconsistent: ‘We must, first of all, value our kind ’as it is’ in order to bestow worth on what we ‘ought to become’, and to pursue any ontological transformation by devaluing the innate constitution of other members of the kind would, paradoxically, negate the value of our own judgement.’ https://blogs.bmj.com/medical-ethics/2021/03/01/discrimination-on-the-ba...
It seems the authors interpret the healthy, innate human constitution that includes our immune system - an act of nature that determines our objective identity - as an act of socia...
I agree that personal autonomy does not of itself invalidate medical mandates.
I note that I do not conclude that vaccine mandates are wrong just because they violate body autonomy of vaccine refusers. Rather, ‘mandatory vaccination, immunity passports, or any other form of discrimination on the basis of the vaccination status are defeasible not because they limit basic freedoms and rights but because they discriminate against (and thus devalue) the innate constitution of all human beings.’ Moreover, the premise that vaccine mandates are justified by the value of human autonomy is logically inconsistent: ‘We must, first of all, value our kind ’as it is’ in order to bestow worth on what we ‘ought to become’, and to pursue any ontological transformation by devaluing the innate constitution of other members of the kind would, paradoxically, negate the value of our own judgement.’ https://blogs.bmj.com/medical-ethics/2021/03/01/discrimination-on-the-ba...
It seems the authors interpret the healthy, innate human constitution that includes our immune system - an act of nature that determines our objective identity - as an act of social coercion, which I contend is a category mistake.
For the sake of clarity, I summarise the three strongest arguments against the ethical permissibility of vaccine mandates:
1. Vaccine mandates imply that all humans are born in a defective, inherently harmful state that must be biotechnologically augmented to allow our unrestricted participation in society, which amounts to discrimination on the basis of healthy, innate characteristics of the human race. This devaluation of the innate human constitution is not only universally dehumanising, but it perverts the very concept of human rights; discrimination against the unvaccinated implies that being born human is no longer a guarantee of full human rights.
2. The right to free, uncoerced medical consent is not negotiable, under any circumstances, because without it we have no guaranteed rights at all; every other right can be subverted by medical coercion. Crucially, by accepting any medical treatment imposed by coercion we would be acquiescing to the taking away of the right to free medical consent not only from ourselves but from our children and from future generations, and we do not have the moral right to do this. Acquiescence to medical coercion is therefore always unethical, even if the mandated intervention were a placebo.
3. Vaccines are known to occasionally cause deaths of healthy people. When an employee is required to receive vaccination as a condition of employment, that employee is economically coerced to participate in an activity where a percentage of employees are expected to die ‘in the course of employment’ as a direct result of the mandated activity. It may be objected that infectious pathogens also kill people, but these two categories of deaths are not ethically equivalent. Infection with a pathogen is not mandated, whereas deaths resulting from mandatory vaccination are mandated deaths, a legalised killing of some people for the prospective benefit of the majority. Critically, any discrimination against the unvaccinated amounts to a violation of the right to life, because a small percentage of the targeted population are expected to die as a result of this coercive treatment. By refusing to acquiesce to mandated vaccines we take an ethical stance in defence of the right to life.
I read with interest the article titled “Ethics of college vaccine mandates, using reasonable comparisons” by Lam LL and Nichols T1, published on Mar 30, 2023, in the Journal of Medical Ethics.
I would like to comment on statements that the above authors made that COVID-19 vaccine-caused myocarditis cases are “generally mild” and “over 90% of the hospitalized vaccine-caused myocarditis cases fully recovered within days”, and that “approximately 10% of the hospitalised cases … may have some long-term consequences”.
Among individuals with COVID-19 vaccine-associated myocarditis, the majority develop cardiac MRI abnormalities including fibrosis, which persist on follow-up, as shown below2-4. The authors’ statements that vaccine-caused myocarditis is ‘mild’ and ‘fully recovered in 90% of cases’ with only ‘10% having long-term consequences’ are misleading, since development of myocardial fibrosis in most patients with vaccine-caused myocarditis refutes these statements. Consequently, any conclusions that the authors make relying on these inaccurate statements are not supported. To promote accuracy, a correction should be issued to the above authors’ statements.
Schauer J2 et al found that at 3-8 months’ follow-up, repeat cardiac MRI showed persistent late gadolinium enhancement, an indicator of cardiac injury and fibrosis, in 68.8% (11/15) of adolescents aged 12-17 years with COVID-19 vaccine–associated myocarditis.
I read with interest the article titled “Ethics of college vaccine mandates, using reasonable comparisons” by Lam LL and Nichols T1, published on Mar 30, 2023, in the Journal of Medical Ethics.
I would like to comment on statements that the above authors made that COVID-19 vaccine-caused myocarditis cases are “generally mild” and “over 90% of the hospitalized vaccine-caused myocarditis cases fully recovered within days”, and that “approximately 10% of the hospitalised cases … may have some long-term consequences”.
Among individuals with COVID-19 vaccine-associated myocarditis, the majority develop cardiac MRI abnormalities including fibrosis, which persist on follow-up, as shown below2-4. The authors’ statements that vaccine-caused myocarditis is ‘mild’ and ‘fully recovered in 90% of cases’ with only ‘10% having long-term consequences’ are misleading, since development of myocardial fibrosis in most patients with vaccine-caused myocarditis refutes these statements. Consequently, any conclusions that the authors make relying on these inaccurate statements are not supported. To promote accuracy, a correction should be issued to the above authors’ statements.
Schauer J2 et al found that at 3-8 months’ follow-up, repeat cardiac MRI showed persistent late gadolinium enhancement, an indicator of cardiac injury and fibrosis, in 68.8% (11/15) of adolescents aged 12-17 years with COVID-19 vaccine–associated myocarditis.
Cavalcante JL et al3 found that at approximately 3 months of follow-up, late gadolinium enhancement consistent with nonischemic fibrosis was still present in 80% (4/5) of adults aged 18-34 years with COVID-19 vaccine–associated myocarditis.
Kracalik I et al4 published data on outcomes at least 90 days after onset of COVID-19 vaccine- associated myocarditis in 519 adolescents and young adults aged 12–29 years. 54% of 151 patients with follow-up cardiac MRI’s had one or more abnormalities, including the presence of late gadolinium enhancement (in 47% of patients), inflammation or oedema, or wall motion abnormalities.
Finally, while the comment by Lam LL and Nichols T is available for free on the website of the Journal of Medical Ethics, the response by the authors of the original article by Bardosh K et al5 is not similarly available for free, which seems unusual.
Sincerely,
John J Jones
References:
1. Lam LL, Nichols T. Ethics of college vaccine mandates, using reasonable comparisons. J Med Ethics. 2023 Mar 30:jme-2022-108852. Online ahead of print.
2. Schauer J, Buddhe S, Gulhane A, et al. Persistent Cardiac Magnetic Resonance Imaging Findings in a Cohort of Adolescents with Post-Coronavirus Disease 2019 mRNA Vaccine Myopericarditis. J Pediatr. 2022;245:233-237.
3. Cavalcante JL, Shaw KE, Gössl M. Cardiac Magnetic Resonance Imaging Midterm Follow Up of COVID-19 Vaccine-Associated Myocarditis. JACC Cardiovasc Imaging. 2022;15:1821-1824.
4. Kracalik I, Oster M, Broder K, et al. Outcomes at least 90 days since onset of myocarditis after mRNA COVID-19 vaccination in adolescents and young adults in the USA: a follow-up surveillance study. Lancet Child Adolesc Health. 2022;6:788-798.
5. Bardosh K, Krug A, Jamrozik E, et al. Covid-19 vaccine boosters for young adults: a risk benefit assessment and ethical analysis of mandate policies at universities. J Med Ethics. 2022 Dec 5;jme-2022-108449. Online ahead of print.
In the U.S. a parent has a fundamental right to raise their child as they see fit, but this not an absolute right. Parents must act in the best interest of their child. The right to know your genetic identity is supported by ethical principles and existing legal frameworks. Denying individuals access to their genetic information violates their autonomy, privacy, and dignity. Lack of access to genetic identity information from birth also significantly increases the likelihood of physical and mental health issues.
Medical history and genetic makeup play an essential role in identifying health risk factors. An accurate medical history provides relevant information to the genetic information stored in our DNA. Family health history is a significant factor in determining the likelihood of developing certain diseases we carry in our DNA. Family medical history includes the types of health conditions family members have been diagnosed with, age of diagnosis, and relevant environmental or lifestyle factors. Common health conditions often included in a family medical history are heart disease, cancer, stroke, diabetes, high blood pressure, and mental health disorders.
A thorough understanding of medical history can help identify early signs of conditions that may otherwise go undetected. People base their health habits on their parents’ medical history which could, if incorrect, lead to medical conditions that might have been prevented, delays in diagnosis, or unnece...
In the U.S. a parent has a fundamental right to raise their child as they see fit, but this not an absolute right. Parents must act in the best interest of their child. The right to know your genetic identity is supported by ethical principles and existing legal frameworks. Denying individuals access to their genetic information violates their autonomy, privacy, and dignity. Lack of access to genetic identity information from birth also significantly increases the likelihood of physical and mental health issues.
Medical history and genetic makeup play an essential role in identifying health risk factors. An accurate medical history provides relevant information to the genetic information stored in our DNA. Family health history is a significant factor in determining the likelihood of developing certain diseases we carry in our DNA. Family medical history includes the types of health conditions family members have been diagnosed with, age of diagnosis, and relevant environmental or lifestyle factors. Common health conditions often included in a family medical history are heart disease, cancer, stroke, diabetes, high blood pressure, and mental health disorders.
A thorough understanding of medical history can help identify early signs of conditions that may otherwise go undetected. People base their health habits on their parents’ medical history which could, if incorrect, lead to medical conditions that might have been prevented, delays in diagnosis, or unnecessary medical procedures. Slow diagnosis due to lack of information may lead to death or long term health problems that could have been avoided. Unnecessary procedures, office visits, and surgeries may be performed due to lack of an accurate medical history.
Knowing your genetic identity plays a role in your sense of connection to the past and cultural heritage and helps people understand and embrace their unique identity and place in the world. The development of a sense of self is influenced by genetic makeup, family dynamics, culture, peer relationships, and life experiences.
A key challenge for someone being raised in non-genetic families, even if it is only one parent, can be on the development of their self-concept. As someone grows and develops, individuals often look to their family for cues about their identity, including physical traits, personality characteristics, and values. For those not genetically related to their family, these cues are not available, leading to a sense of disconnection or confusion about identity. “Genetic bewilderment” is a term coined by geneticist Richard Lewontin and is the feeling of “otherness” rooted in a break in the continuity of genetic heritage. Essentially a personal sense of security and belonging to the family group is undermined which affects development. Individuals in these instances often blame themselves for this lack of genetic mirroring resulting in potential self-esteem issues, insecurity, and genetic bewilderment.
Parents are not acting in the best interest of their child when they choose not to tell their child they are donor conceived. Infertility is a deeply distressing experience that can cause intense feelings of loss, grief, and shame. The emotional intensity of infertility trauma may lead to the parent unconsciously dissociating from the child’s origins as a coping mechanism. The child’s origin is buried so deep in the parent’s subconscious, they no longer remember the truth.
Avni, Chen et al. "Discovering Your Presumed Father Is Not Your Biological Father: Psychiatric Ramifications of Independently Uncovered Non-Paternity Events Resulting from Direct-to-Consumer DNA Testing." Psychiatry Research, vol. 323, 2023.
Klugman-Rabb, Jodi. “A Qualitative Study on the Effect of Misattributed Parentage Experiences.” Dissertation, Touro University Worldwide, 2023.
Lawton, Bessie et al. “Experiences of Misattributed Parentage Communities: Impacts of Discovering New Familial Kinships.” Journal of Family History, vol. 46, no. 2, 2021, pp. 117-136.
Lewontin, Richard. "The Triple Helix: Gene, Organism, and Environment." Harvard University Press, 2001.
I thank Dr. Pennings for his thoughtful work. There are, however, further critical points to be considered when designating any arbitrary age by which a donor conceived person (DCP) can learn the identity of his/her donor. Although I agree that outcome research needs to be conducted on DCP stratified by the age at which they specifically learn their donors identities, the existing research on adoption, which parallels many of the ethical and humanistic aspects of donor conception, largely supports the idea of open adoption, where all parties are knowledgeable of the others at birth. According to one recent review, contact with the birth family results in substantially more positive outcomes for adoptees (Smith et al, 2020). Research has also shown significantly greater benefit for the adoptive parents and birth mothers in terms of satisfaction with the adoption process and post-partum adjustment in open adoption (Ge et al, 2008). This study also indicates positive experience in the new kinds of relationships created through open adoption, and the authors extend the implications of their findings to reproductive technologies such as donor conception as well.
The practicalities of enforcement of a designated age where DCPs might be permitted to learn their donor's identities also must be addressed. DCPs learning the identity of their donor through commercial DNA testing prior to the designated age is only one consideration. A second ethical dilemma would b...
I thank Dr. Pennings for his thoughtful work. There are, however, further critical points to be considered when designating any arbitrary age by which a donor conceived person (DCP) can learn the identity of his/her donor. Although I agree that outcome research needs to be conducted on DCP stratified by the age at which they specifically learn their donors identities, the existing research on adoption, which parallels many of the ethical and humanistic aspects of donor conception, largely supports the idea of open adoption, where all parties are knowledgeable of the others at birth. According to one recent review, contact with the birth family results in substantially more positive outcomes for adoptees (Smith et al, 2020). Research has also shown significantly greater benefit for the adoptive parents and birth mothers in terms of satisfaction with the adoption process and post-partum adjustment in open adoption (Ge et al, 2008). This study also indicates positive experience in the new kinds of relationships created through open adoption, and the authors extend the implications of their findings to reproductive technologies such as donor conception as well.
The practicalities of enforcement of a designated age where DCPs might be permitted to learn their donor's identities also must be addressed. DCPs learning the identity of their donor through commercial DNA testing prior to the designated age is only one consideration. A second ethical dilemma would be that in groups of donor siblings with large age ranges, the older members would inevitably have the "right" to learn the donor identity first, and the expectation that they will then withhold this information from the younger siblings, sometimes for many years or decades, cannot be regulated.
As has been the trend in adoption, the existing empirical and anecdotal knowledge base, the growing recognition of the need for research on donor identity and related topics in donor conception, and available tools such as DNA testing are unquestionably leading the field of third party reproduction towards one of uniform openness. As both a psychologist and a DCP, it is my hope and expectation that the openness will substantially enhance the process and outcomes for all individuals associated with donor families as we have seen in open adoption.
References
Ge, X., Natsuaki, M. N., Martin, D. M., Leve, L. D., Neiderhiser, J. M., Shaw, D. S., Villareal, G., Scaramella, L., Reid, J. B., & Reiss, D. (2008). Bridging the divide: Openness in adoption and postadoption psychosocial adjustment among birth and adoptive parents. Journal of Family Psychology, 22(4), 529- 540. https://doi.org/10.1037/a0012817
Smith, M., Gonzalez-Pasarin, L., Salas, M. D. & Bernedo, I. M. (2020). Review of benefits and risks for children in open adoption arrangements. Child & Family Social Work, 25, 761-774, doi: 10.1111/cfs.12753
There seems to be a disconnect between Dr. Pennings and the decades of reporting of actual experiences of parents, donors and donor-conceived people.
The first argument is that there is no evidence that a change in age will increase the total well-being of donor offspring as a group.
There is plenty of published research and years of anecdotal evidence. We invite Dr. Pennings to read not only the research, (https://indd.adobe.com/view/ac2a0b99-f67a-4768-bf8c-c48af5aeebaf) but also the reported experiences of more than 86,000 over the past 22 years on the www.DonorSiblingRegistry.com website. Many thousands of these donor-conceived people (DCP) have connected with their biological parent (donor) long before the age of 18. Many more DCP have made their stories public in hopes of shining a light on the innate human desire to know who and where we come from. Many formerly anonymous egg and sperm donors who have connected with donor children have participated in research and have also made their stories public. Additionally, several dozen egg clinics, agencies, and lawyers have been writing the Donor Sibling Registry into their parent-donor agreements for many years, connecting donors and parents right from pregnancy/birth. This is an extremely popular and successful program empowering donors and parents to decide the depth, breadth,...
There seems to be a disconnect between Dr. Pennings and the decades of reporting of actual experiences of parents, donors and donor-conceived people.
The first argument is that there is no evidence that a change in age will increase the total well-being of donor offspring as a group.
There is plenty of published research and years of anecdotal evidence. We invite Dr. Pennings to read not only the research, (https://indd.adobe.com/view/ac2a0b99-f67a-4768-bf8c-c48af5aeebaf) but also the reported experiences of more than 86,000 over the past 22 years on the www.DonorSiblingRegistry.com website. Many thousands of these donor-conceived people (DCP) have connected with their biological parent (donor) long before the age of 18. Many more DCP have made their stories public in hopes of shining a light on the innate human desire to know who and where we come from. Many formerly anonymous egg and sperm donors who have connected with donor children have participated in research and have also made their stories public. Additionally, several dozen egg clinics, agencies, and lawyers have been writing the Donor Sibling Registry into their parent-donor agreements for many years, connecting donors and parents right from pregnancy/birth. This is an extremely popular and successful program empowering donors and parents to decide the depth, breadth, and timing of their own relationships. Openness, honesty, and transparency is the future of the gamete donation industry.
Several hundred experiences of donor-conceived people connecting with half-siblings and biological parents can be read on the Success Story page: https://donorsiblingregistry.com/success_stories
Nowhere on the planet, or at any time in history has it been medically or psychologically accepted practice to deliberately keep a person from their ancestry, medical family history, or close genetic relatives for the first 5, 10, or 18 years of life.
The second argument stresses that the rights language used for the donor-conceived child isolates the child from his or her family and this is unlikely to be in the best interest of the child.
Completely false. Connecting with one’s donor relatives in no way isolates them from the family they’ve grown up with. Connecting with donor family: half-siblings or biological parents is expanding family. It is an "adding to", not a "taking away" or diminishing one's current family system. More than 24,000 donor-conceived people have made these connections on the Donor Sibling Registry.
Finally, lowering the age limit reintroduces the genetic father in the family and expresses the bionormative ideology that contradicts gamete donation as a practice.
Gamete donation is utilized because of the importance of biology. Parents want, and acknowledge the importance of that genetic link, usually with one parent. You can not acknowledge the importance of the genetic connection of one biological parent while denying the importance of knowing the other genetic parent, ancestry, and medical family history. DNA is not the only way to make a family, but the adoption world and now the world of donor conception have taught us that it is certainly one way to define family. Many thousands of adopted people and donor-conceived people feel very strongly about knowing their DNA relatives. Tho them, it's isn't just a "donated cell" or a "piece of genetic material". It's one half of their identity.
Anonymity has not been possible for 18 years. Why continue to have conversations around mandated anonymity when it's been an antiquated idea and practice since 2005? Why not listen to us, the donor families? Why not ride the horse in the direction it's going?
Wendy Kramer wendy@donorsiblingregistry.com
Parent to a donor-conceived son
Director and Co-founder, the Donor Sibling Registry
S.P.E.R.M. The Society for the Promotion of Ethics in Reproductive Medicine
Philosophical arguments about autonomy and Medical Assistance in Dying (MAiD), such as those recently espoused by Wiebe and Mullin [1] in the BMJ Journal of Medical Ethics are deeply troubling in their implications and flawed in their considerations.
In a nutshell, Wiebe and Mullin argue that MAiD can be a ‘harm-reducing’ embrace of individual autonomy to avoid prolonging suffering in oppressed people who cannot access adequate socioeconomic resources. They speak specifically to the application of Bill C-7 MAiD, also known as not-reasonably-foreseeable-natural-death or Track 2, which is for people with chronic physical conditions causing suffering but not death. They argue that even though a person may be poor or have limited options, they can still hold and express autonomy to request and receive death. Death, in their formulation, is the least bad option for people suffering social inequality in an unjust world.
Theirs appears as the latest in a series of recent papers attempting to use autonomy arguments to justify MAiD access under an expanding range of circumstances. Davis and Mathison [2], for example, argue that a person's ‘welfare condition’ is irrelevant to the ‘moral permissibility’ of MAiD. Braun similarly argues for the ‘provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests’ [3].
Philosophical arguments about autonomy and Medical Assistance in Dying (MAiD), such as those recently espoused by Wiebe and Mullin [1] in the BMJ Journal of Medical Ethics are deeply troubling in their implications and flawed in their considerations.
In a nutshell, Wiebe and Mullin argue that MAiD can be a ‘harm-reducing’ embrace of individual autonomy to avoid prolonging suffering in oppressed people who cannot access adequate socioeconomic resources. They speak specifically to the application of Bill C-7 MAiD, also known as not-reasonably-foreseeable-natural-death or Track 2, which is for people with chronic physical conditions causing suffering but not death. They argue that even though a person may be poor or have limited options, they can still hold and express autonomy to request and receive death. Death, in their formulation, is the least bad option for people suffering social inequality in an unjust world.
Theirs appears as the latest in a series of recent papers attempting to use autonomy arguments to justify MAiD access under an expanding range of circumstances. Davis and Mathison [2], for example, argue that a person's ‘welfare condition’ is irrelevant to the ‘moral permissibility’ of MAiD. Braun similarly argues for the ‘provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests’ [3].
These are not new arguments.
Thirty years ago, the American murderer Dr MJ ‘Jack’ Kevorkian [4], a euthanasia and assisted suicide advocate and illicit provider, expressed cruder versions of the same positions, claiming that ‘autonomy always, always should be respected, even if it is absolutely contrary, the decision is contrary to best medical advice and what the physician wants…’ and that a mere request for death is justification alone for provision, regardless of circumstance [5]. He rationalised this idea through an instrumental view of life, arguing like Patrick Henry in the American Revolution [6], that death is an acceptable solution to any perceived loss of personal liberty (i.e., oppression).
‘Listen, when you take my liberty away, you've taken away more-something more precious than life. I mean, what good is a life without liberty? Huh? None.’ [7]
‘If you don't have liberty and self-determination, you've got nothing, that's what this is what this country is built on. And this is the ultimate self-determination, when you determine how and when you're going to die when you're suffering.’ [8]
It is also worth noting that Kevorkian disproportionately killed or assisted death for women, many of whom may not have had any physical illness [9] and claimed ‘that only medical men should decide’ on MAiD [7]. Aside from his blatant misogyny, his statements highlight a central but unacknowledged problem in Wiebe and Mullin’s and similar individualised formulations of MAiD: the tension between the patient's autonomy, the clinician's autonomy, and society.
Dying with Dignity, Canada's 43-year-old MAiD lobby group is organised around an autonomy rationale [10,11]. Autonomy likewise appears in the final report of the Canadian parliamentary joint committee on MAiD as part of the package of justifications and recommendations [12]. Current Canadian MAiD providers also frequently cite autonomy rationales that echo Kevorkian, Wiebe and Mullin, and others, suggesting that together with reported cases [13], some assessors and providers may already operationalise such arguments, including senior members of the Canadian Association of MAiD Assessors and Providers [14], who make statements such as:
‘My job is to help them have a good life and a good death by their standards, not by mine or anybody else’s’[15]
‘I believe very, very strongly in patient autonomy, what we call patient centred care…’[16]
Importantly, in Canada, MAiD is 99.9 % euthanasia. Still, the autonomy of the clinicians who decide how to present MAiD to the patient, how to assess the request, and finally, whether to still proceed with lethal injection (or issuing lethal doses of pharmaceuticals for the sporadic self-administration cases) after asking the patient for their final consent, are ignored by Wiebe and Mullin. By enlisting euthanasia, patients might be better said to be surrendering, not embracing, much of their autonomy, indeed their lives, to their assessors and providers. Certainly, there are already published accounts of shackled and guarded prisoners being assessed and euthanised by paired MAID assessors and providers, yet apparently still considered to have enough coercion-free autonomy for death [17].
Providers are not Kevorkian’s Thanatron death machine [18], but human ‘agents ‘ themselves who must have the same autonomy as their patients, albeit with wealth, health, privilege, and decision-making power, including a legal exemption to criminal culpability for murder, that leaves them in a much more advantageous ‘welfare condition’ than Wiebe and Mullin’s impoverished or oppressed requestors. Wiebe and Mullin, however, call it ‘paternalistic’ to prevent people from accessing MAiD but make no comment on the brutal paternalism of a privileged and empowered actor representing the state who judges someone’s eligibility for death and then may kill them. Why is clinician autonomy discounted? The privilege and power of assessors and providers is a major persistently unaddressed flaw in the reasoning of these kinds of patient autonomy-based arguments.
Wiebe and Mullin also attempt to criticise ‘relational autonomy’ perspectives, arguing that restricted options do not limit a person’s autonomy because they can still exercise,
‘the ability to understand, appreciate the consequences of their choice, the capacity to value, the ability to reflect on the values guiding their decision, as well as the attitudes of engaged hope, self-worth and self-trust.’[1]
However, their definition of autonomy appears to be a repackaging of the obsolete ‘homo economicus’ model human actor from neoclassical economic theory, where people are understood to be ‘unswervingly rational, completely selfish, and can effortlessly solve even the most difficult optimization problem’ [19]. However, research in neuroscience, biology, psychology, public health, sociology, and other disciplines has long since established that our relative autonomy and agency are products of myriad internal and external biophysical and social experiences, relationships, circumstances, and systems. None of us exists in hermetic vacuums of rational reason.
Among these relationships are loved ones, friends, and others impacted by a MAiD death, who might also be sources of support otherwise unknown to the assessor. No consideration is given to them, yet it is well established that suicide and homicide (euthanasia is a form of the latter), in addition to MAiD, can lead to diagnosed prolonged grief disorder, trauma, and other health problems in those who knew the deceased or witnessed the death [20–22]. MAiD clinicians, however, are not legally required to seek information from such people (including other healthcare providers) or enlist them to help identify supports that might relieve oppression and improve conditions. Nor are they required to facilitate grief support, even when the patient does not ban them from contacting others. In fact, the recently released but optional Model Practice Standard for MAiD strongly advises assessors to take every step to seek ‘collateral information’ from other sources [23], suggesting this is not routinely happening. However, suppose a MAiD assessor strongly believes in the individual rather than relational autonomy. In that case, they have no ideological reason to seek such information from others or mitigate harm to them through engagement and grief support.
By voiding a person’s relational context, the impact of their death on others, and the autonomy of the people who must assess and approve death from consideration, Wiebe and Mullin and their ideological colleagues idealise patient autonomy. Like Kevorkian, they construct euthanasia or assisted suicide (non-culpable homicide and suicide assistance under Canadian MAiD law [24]) as virtuous though ‘tragic’ expressions of self-determination and ‘harm reduction’. Do they consider the harm to others from MAiD deaths as illegitimate or irrelevant? There is a prospect, for example, of an otherwise healthy person grieving or traumatised by a MAiD death and diagnosed with PTSD or a grief disorder receiving MAiD for such mental illnesses in 2024 when this becomes available. Would such begotten MAiD also be a tragic but laudable act of ‘harm reduction’ because grief is suffering, regardless of its origin?
Finally, Wiebe and Mullin claim that the cases they describe ‘will be few relative to the proportion of patients who can and will access MAiD due to Bill C-7’ (MAiD for disabled people who are not dying). However, according to federal reporting, there were 221 C-7 deaths in 2021 after Bill C-7 became law [25], which is not a ‘few’. Note here that Health Canada reporting obscures this number in a mixed format of a percentage of a fraction (2.2 %/10 064 deaths), so the reader must convert that percentage to get the number of C-7 deaths [25]. Given the significant yearly increases in MAiD deaths, there will likely be more than 221 for 2022 when data become available. Those 221 people were real people with names and authentic lives (not merely dehumanised ‘agents’) and will likely amount to thousands of deaths in a very short time, given the annual increases in deaths we have already seen [25].
Societies that find intellectual ‘reasons’ to euthanise or kill the poor, sick, disabled, or socially oppressed groups commit atrocities. A former MAiD provider has even sounded this alarm in the wake of eligibility expansions [26]. Despite claims that a lack of support for people is a ‘deep injustice’, the vision of society painted by Wiebe and Mullins is dystopian, where injustice may be morally permitted to flourish so long as others with greater autonomy judge oppressed people to have enough autonomy and ‘engaged hope’ to kill themselves or have themselves killed. Indeed, they seem to argue that medically provided suicide-for-oppression is a suitable and just response ‘to a world that currently does not exist and is unlikely to emerge in the near future’. Thus, in addition to MAiD for both chronic and terminal physical illness and disability, and official consideration or arguments for mental illness [27], children (‘mature minors’) [12] and infants [28], we now see Kevorkian’s old argument re-emerge as a new slip on the expansionist slope as an argument for MAiD for people whose sole condition is the experience of forms of deprived liberty. Wiebe and Mullin’s and allied proposals, perhaps unwittingly, thus serve the construction of an intellectual foundation for eliminating rather than emancipating the poor and oppressed by an empowered (medical) elite. MAiD, in this way, is ultimately a political, not a medical, project. We have seen versions of this before and we know how it ends.
References
1 Wiebe K, Mullin A. Choosing death in unjust conditions: hope, autonomy and harm reduction. J Med Ethics 2023;:jme-2022-108871. doi:10.1136/jme-2022-108871
2 Davis J, Mathison E. The Case for an Autonomy-Centred View of Physician-Assisted Death. J Bioethical Inq 2020;17:345–56. doi:10.1007/s11673-020-09977-8
3 Braun E. An autonomy-based approach to assisted suicide: a way to avoid the expressivist objection against assisted dying laws. J Med Ethics 2022;:medethics-2022-108375. doi:10.1136/jme-2022-108375
4 Charatan F. Dr Kevorkian found guilty of second degree murder. Br Med J 1999;318:962.
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9 Solomon LM, Noll RC. Physician-assisted suicide and euthanasia: Disproportionate prevalence of women among Kevorkian’s patients. Gend Med 2008;5:110–4. doi:10.1016/j.genm.2008.06.001
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11 Godley E. Patients’ right to die becoming major issue for MDs and MPs. Can Med Assoc J 1992;146:608–10.
12 Garneau M, Martin Y. Medical Assistance in Dying: Choices for Canadians Report of the Special Joint Committee on Medical Assistance in Dying. Ottawa: : Parliament of Canada 2023.
13 Anderssen E. A complicated grief: Living in the aftermath of a family member’s death by MAID. Globe Mail. 2023.https://www.theglobeandmail.com/canada/article-maid-death-family-members... (accessed 20 Mar 2023).
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15 The Canadian Press. Dr. Ellen Wiebe: ‘We should all have the right to die at our own choice’. Macleans.ca. 2016.https://macleans.ca/news/canada/dr-ellen-wiebe-we-should-all-have-the-ri... (accessed 18 Mar 2023).
16 Stefanie Green: The ethics of assisted dying. HARDtalk. 2023.https://www.bbc.co.uk/programmes/w3ct32mr (accessed 18 Mar 2023).
17 Driftmier P, Shaw J. Medical Assistance in Dying (MAiD) for Canadian Prisoners: A Case Series of Barriers to Care in Completed MAiD Deaths. Health Equity 2021;5:847–53. doi:10.1089/heq.2021.0117
18 Beschizza R. The Thanatron, Jack Kevorkian’s Death Machine. Wiredhttps://www.wired.com/2007/06/the-thanatron-j/ (accessed 12 May 2023).
19 Levitt SD, List JA. Homo economicus Evolves. Science 2008;319:909–10. doi:10.1126/science.1153640
20 Wagner B, Müller J, Maercker A. Death by request in Switzerland: Posttraumatic stress disorder and complicated grief after witnessing assisted suicide. Eur Psychiatry 2012;27:542–6. doi:10.1016/j.eurpsy.2010.12.003
21 Tal Young I, Iglewicz A, Glorioso D, et al. Suicide bereavement and complicated grief. Dialogues Clin Neurosci 2012;14:177–86. doi:10.31887/DCNS.2012.14.2/iyoung
22 Yan H, Bytautas J, Isenberg SR, et al. Grief and bereavement of family and friends around medical assistance in dying: scoping review. BMJ Support Palliat Care Published Online First: 13 September 2022. doi:10.1136/spcare-2022-003715
23 MAID Practice Standards Task Group. Model Practice Standard for Medical Assistance in Dying (MAID): Regulatory authority for [Physicians/Nurses] of [jurisdiction] Standard of Practice Medical Assistance in Dying (MAID). Health Canada 2023. https://www.canada.ca/en/health-canada/services/medical-assistance-dying...
24 Criminal Code. 1985.
25 Health Canada. Third annual report on Medical Assistance in Dying, 2021. Ottawa: : Government of Canada 2022. https://www.canada.ca/en/health-canada/services/medical-assistance-dying...
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27 Health Canada. Final Report of the expert panel on MAiD and mental illness. Ottawa: : Government of Canada 2022.
28 Cullen C, Zabjek A. Federal minister says she’s ‘shocked’ by suggestion of assisted deaths for some babies. CBC News. 2022.https://www.cbc.ca/news/politics/assisted-dying-carla-qualtrough-1.6625412 (accessed 11 Apr 2023).
Wiebe and Mullin argue that autonomous individuals requesting MAiD because of “unjust social circumstances” or “oppression” should receive MAiD as part of a “harm reduction approach.”
To successfully defend this thesis, one would be required to defend a particular understanding of autonomy and harm. As these authors note, these terms are notoriously difficult to define. The authors assert that “acting autonomously…requires hope,” the implication being that a truly hopeless person cannot be meaningfully autonomous. The authors subsequently argue, in seeming contradiction, that “people whose reduced opportunities have led them to lose all hope” are autonomous decision makers. Their attempt to resolve this tension involves asserting that the act of pursuing MAiD is, itself, evidence of “engaged hope.” This runs directly contrary to the witness of patients in these circumstances, who cite despair and hopelessness as their motivation. It is an idiosyncratic and paternalistic (and therefore ironic) understanding of hope that suggests that patients who report a desire for MAiD because of hopelessness are, contrary to their own feelings, hopeful and therefore autonomous.
It may be helpful to think in particulars. In my work as a physician and ethicist in Canada, I have encountered the type of cases that Wiebe and Mullin allude to. In a representative case, a previously able-bodied individual experienced sudden, inexplicable neurological illness that caused significa...
Wiebe and Mullin argue that autonomous individuals requesting MAiD because of “unjust social circumstances” or “oppression” should receive MAiD as part of a “harm reduction approach.”
To successfully defend this thesis, one would be required to defend a particular understanding of autonomy and harm. As these authors note, these terms are notoriously difficult to define. The authors assert that “acting autonomously…requires hope,” the implication being that a truly hopeless person cannot be meaningfully autonomous. The authors subsequently argue, in seeming contradiction, that “people whose reduced opportunities have led them to lose all hope” are autonomous decision makers. Their attempt to resolve this tension involves asserting that the act of pursuing MAiD is, itself, evidence of “engaged hope.” This runs directly contrary to the witness of patients in these circumstances, who cite despair and hopelessness as their motivation. It is an idiosyncratic and paternalistic (and therefore ironic) understanding of hope that suggests that patients who report a desire for MAiD because of hopelessness are, contrary to their own feelings, hopeful and therefore autonomous.
It may be helpful to think in particulars. In my work as a physician and ethicist in Canada, I have encountered the type of cases that Wiebe and Mullin allude to. In a representative case, a previously able-bodied individual experienced sudden, inexplicable neurological illness that caused significant disability and chronic pain. He was no longer able to work or access his home, and the required mobility supports were initially denied. In this context, the patient requested MAiD, citing the unjust and ableist nature of the system as his sole motivation. He was clear that his ‘higher’ desire was to live; his request to die would be retracted if his circumstances changed. His request for MAiD was not the choosing of a preferred option. He requested MAiD because, in his unjust context, it seemed to be his only choice. He felt as if he had no choice. His circumstances were straightforwardly coercive.
Wiebe and Mullin have said, in this kind of situation, that a physician like myself can (and should) both try to remedy the underlying injustice and also end the life of a patient who, regardless of any autonomy determination, has a higher desire to live. In a particular case, I cannot do both. In this case, his care team chose to advocate for him. He is alive today, grateful to a team that ‘paternalistically’ valued his higher desire and intrinsic value, over a desperate request driven by unjust circumstances. Would Wiebe and Mullin suggest that they harmed him by doing so?
Finally, it is important to address the underlying assumptions that lie beneath Wiebe and Mullin’s understanding of autonomy and harm. Which understanding of anthropology suggests that it is less harmful to end a person’s life rather than to deny a request that is motivated by remediable social injustice? Certainly not the anthropology of Kant or Mill, who are originators of the modern idea of autonomy. Certainly not that of Beauchamp and Childress, who were the first to formulate ‘The Principle of Respect for Personal Autonomy’ as a “prima facie” principle of biomedical ethics (more on this here: https://academic.oup.com/jmp/article/46/3/330/6265006). Certainly not the classical medical view of the person, which defines harm in terms of health. I empathize with the discouragement that the authors express regarding the availability of equitable medical care in Canada. But I do not agree that such a context should lead us to hopelessness, abandoning vulnerable individuals who feel like they have no choice but to die. An ethical society would pursue the good for these individuals. Good medicine would pursue their health.
In a recent article two Canadian ethicist/philosophers argued the appropriateness of granting early medical termination (MAiD) to those requesting it because of poverty or a lack of socioeconomic or institutional resources. These are those who would prefer to live but only with unavailable support services ranging from housing to social or rehabilitative and housing resources.
That the ethical focus should be on the a lack of resources so severe as to make life seem intolerable is not considered by these authors or most other ethicist/philosophers. They assume limited resources are fixed and institutionalized. This ignores the long history of medical and social activism begun in the mid-1800s--Rudolph Virchow being the most famous example--that focused on the failure of social support rather than the inevitable deaths that resulted. If one were to take ethics seriously, the issue would not be permissiveness but activist arguments in that earlier tradition for the care required by the fragile and vulnerable. It is thus that was lost--what Jane Adams called the 'guardianship function' when bioethicists sought successfully to disparage the ethical engagement of physicians involved in patient care.
Alas, an ethics of 'least harm' that accepts the status quo driving individuals to seek an early death is really no ethic at all. It's simply an acceptance of an unacceptable status quo that in ethics, should be the focus.
"The will of the people shall be the basis of the authority of government".Article 21 of the United Nations' 1948 Universal Declaration of Human Rights
The most recent feature article by Bardosh et al opposes policies requiring vaccination with SARS Cov-2 mRNA vaccines in order to matriculate at universities in the United States (1). While the exposition put forward is thorough and cogent, the article raises a much larger question dealing with forced vaccination to prevent illness in our population. Vaccination has been enormously successful in dealing with a host of human diseases (2-4). One cannot overstate the huge benefits to humanity accruing from prevention of viral diseases including smallpox, rabies, yellow fever, measles, mumps, rubella, varicella and, of course, paralytic polio. Recently developed vaccines protect against hepatitis A and B. Human papilloma virus vaccine may succeed in reducing the cancer burden in women and also in men. Typhoid, tetanus, diphtheria, pertussis, hemophilus, meningococcus, and pneumococcus vaccines have been highly successful in dealing with these bacterial pathogens (5).
All states require children to be vaccinated against certain communicable diseases as a condition for school attendance
That is understandable since school brings together a large number of individuals in very close proximity. Certainly colleges with the inevitable crowded living conditions in dormitories promote a 24 hour expo...
"The will of the people shall be the basis of the authority of government".Article 21 of the United Nations' 1948 Universal Declaration of Human Rights
The most recent feature article by Bardosh et al opposes policies requiring vaccination with SARS Cov-2 mRNA vaccines in order to matriculate at universities in the United States (1). While the exposition put forward is thorough and cogent, the article raises a much larger question dealing with forced vaccination to prevent illness in our population. Vaccination has been enormously successful in dealing with a host of human diseases (2-4). One cannot overstate the huge benefits to humanity accruing from prevention of viral diseases including smallpox, rabies, yellow fever, measles, mumps, rubella, varicella and, of course, paralytic polio. Recently developed vaccines protect against hepatitis A and B. Human papilloma virus vaccine may succeed in reducing the cancer burden in women and also in men. Typhoid, tetanus, diphtheria, pertussis, hemophilus, meningococcus, and pneumococcus vaccines have been highly successful in dealing with these bacterial pathogens (5).
All states require children to be vaccinated against certain communicable diseases as a condition for school attendance
That is understandable since school brings together a large number of individuals in very close proximity. Certainly colleges with the inevitable crowded living conditions in dormitories promote a 24 hour exposure to whatever pathogens may achieve dominance in the community. The proponents of SARS-Cov-2 mRNA vaccine administration have placed the bivalent vaccine on the recommended list of childhood vaccinations, encouraging that this vaccine administration be required for children to be allowed to attend school. Such mandates are effective in compelling vaccination. The example of hepatitis A vaccination is noteworthy since it is not mandated in a significant number of states. In those states which have the longest history of compulsory hepatitis A vaccination for school attendance, the percentage of children so vaccinated is modestly higher than in those states which do not so require (6).
Bardosh et al have provided an extensive risk benefit analysis to claim that the mandatory administration of the SARS-Cov-2 mRNA vaccine is likely to produce more harm than benefit. Although we do not dispute their analysis, we would argue that the actual ethical issue is whether the general public, consisting of the governed population of the United States, has accepted the advisability of mRNA SARS-Cov-2 immunization in the face of uncertainty and confusion. At the present time as of the end of 2022, even among the highly vulnerable senior population, ages 65 and over, only about 36% have taken the bivalent booster (7). The willingness to accept the bivalent vaccine is far less than that among parents desiring to protect their school children. Furthermore, the FDA Vaccines Division, responsible for the approval of the mRNA vaccine, recently issued a remarkably candid appraisal, authored by Marks et al, acknowledging frustration at the rapidity with which mutations of SARS-Cov-2 result in rapidly waning benefit of mRNA vaccines (8). Just 6 months before, In June, 2022 there was a strong emphasis from that same FDA Vaccines Division on accelerating the preparation of mRNA vaccines against the BA4 and BA5 variants which were projected to have dominance in the fall (9). Pfizer and Moderna produced these mRNA products only to face the current reality that as of late October the BQ1 and BQ1.1 variants had replaced BA5 as the dominant variants with rapidly waning vaccine induced immunity and protection against symptomatic disease (10,11). A recent analysis of antibody classes elicited by repeated SARS-Cov-2 mRNA vaccination showed increasing levels of IgG4 tolerogenic antibodies, perhaps furnishing a partial explanation of waning immunity (12). Furthermore, animal models of repeated SARS-Cov-2 vaccination have recently been shown to induce humoral and cellular immune tolerance in animal models (13). Marks et al now state “Continuing along the current path of the generation and administration of variant-specific vaccine boosters is inadequate as a long-term strategy for addressing COVID-19 in populations globally” (8). This major shift at the FDA certainly does not convey confidence in a plan to mandate repeated vaccination and revaccination of the young population. If we consider the list of those vaccines previously mandated for school attendance, we realize that all have had extensive testing and years of experience. If these vaccines are mandated, it is only because the test of time has led to acquiescence by the population. Furthermore, exemptions are granted to parents who are opposed to vaccinating their children. Although exemptions could result in decreased herd immunity, that is not the case because few parents choose exemption from those vaccines which have achieved the confidence of our population. The most successful Covid vaccination campaign is in the small island nation of Cuba where three separate non-mRNA recombinant protein subunit vaccines administered at all ages from 2 years and over have yielded the most favorable results in the world in terms of Omicron infection and the lowest infection related mortality. These non mRNA vaccines have impressed their population to the extent that well over 90% have demonstrated confidence in the Cuban public health program and voluntarily chosen vaccination without mandates (14). A high level report by an international group has been issued recommending engagement and consideration of the use of the Cuban Covid vaccines worldwide (15).
In a comprehensive review of the challenges to development of effective vaccines against SARS-Cov-2 and other mucosally replicating respiratory viruses, Morens et al concluded “Durably protective vaccines against non-systemic mucosal respiratory viruses with high mortality rates have thus far eluded vaccine development efforts” (16). Marks et al now state “Simply updating the existing vaccine constructs with new variant sequences or even making trivalent or quadrivalent vaccines covering several variants is not likely to provide the depth and breadth of protection needed to interrupt viral transmission during a prolonged period” (8). They point out “However, the situation is far from hopeless because there are other approaches to future COVID-19 vaccine development currently under investigation”. We emphatically agree. In the face of uncertainty and confusion, as we attempt to protect segments of our population, we must not lose sight of the need for individuals to have the freedom to make their own educated choices. The best approach to vaccination is clearly that of education by government and the physician community so that there will be collective agreement as to benefit and absence of harm. Individuals should enjoy the dignity of choice. That policy is the venerable ideal of “consent by the governed” (17).
REFERENCES
1) Bardosh K, Krug A, Jamrozik E, et al. COVID-19 vaccine boosters for young adults: a risk benefit assessment and ethical analysis of mandate policies at universities. Journal of Medical Ethics Published Online First: 05 December 2022.
2) Greenwood B. The contribution of vaccination to global health: past, present and future. Philos Trans R Soc Lond B Biol Sci. 2014 May 12;369(1645):20130433.
3) Andre FE, Booy R, Bock HL, et al. Vaccination greatly reduces disease, disability, death and inequity worldwide. Bull World Health Organ. 2008 Feb;86(2):140-6.
4) Orenstein WA, Ahmed R. Simply put: Vaccination saves lives. Proc Natl Acad Sci U S A. 2017 Apr 18;114(16):4031-4033
5) Amanna IJ, Slifka MK. Successful Vaccines. Curr Top Microbiol Immunol. 2020;428:1-30
6) Nelson NP, Yankey D, Singleton JA, Elam-Evans LD. Hepatitis A vaccination coverage among adolescents (13-17 years) in the United States, 2008-2016. Vaccine. 2018 Mar 14;36(12):1650-1659
7) Baumgaertner E. As Covid Deaths Climb, Even Seniors Skip the Latest Booster https://www.nytimes.com/2022/12/21/health/covid-bivalent-booster-elderly...
8) Marks PW, Gruppuso PA, Adashi EY. Urgent need for next-generation COVID-19 Vaccines. JAMA. Published online December 09, 2022.
9) Marks P, Woodcock J, Califf R. COVID-19 Vaccination—Becoming part of the new normal. JAMA. 2022;327(19):1863–1864.
10) Rubin R. COVID-19 Boosters this fall to include omicron antigen, but questions remain about its value. JAMA. 2022;328(5):412–414
11) Rodriguez A, Weintraub K. BQ.1 and BQ.1.1 are now the dominant COVID variants. Here's what this means. https://www.usatoday.com/story/news/health/2022/11/20/new-covid-omicron-...
12) Irrgang P, Gerling J, Kocher K, et al. Class switch towards non-inflammatory, spike-specific IgG4 antibodies after repeated SARS-CoV-2 mRNA vaccination. Sci Immunol. 2022 Dec 22:eade2798.
13) Gao FX, Wu RX, Shen MY, et al . Extended SARS-CoV-2 RBD booster vaccination induces humoral and cellular immune tolerance in mice. iScience. 2022 Dec 22;25(12):105479
14) Gorry C. Vaccines and Public Trust: Containing COVID-19 in Cuba. MEDICC Rev. 2022;24(1):9-13
15) Osterholm MT, Rabadán-Diehl C, et al. FULL TECHNICAL REPORT Insights from Cuba's COVID-19 vaccine enterprise: Report from a high level fact-finding delegation to Cuba. MEDICC Rev. 2022 Oct 31;24(3-4):72-108
16) Morens DM, Taubenberger JK, Fauci AS. Rethinking next-generation vaccines for coronaviruses, influenzaviruses, and other respiratory viruses. Cell Host Microbe. 2023 Jan 11;31(1):146-157.
17) Cassinelli, CW. (1959). "The 'Consent' of the Governed". Political Research Quarterly. 1959 12 (2): 391–409
As a retired palliative care physician, I am puzzled by several aspects of this article. First, authors’ choice of terminology: ‘terminal sedation’ and ‘expanded terminal sedation’. It is more than 20 years since the use of the former began to be discouraged because of perceived ambiguity, and replaced by ‘palliative sedation’ (PS)[1] – as reflected in current professional guidelines.[2] And despite dissenting voices,[3] most clinicians would probably consider ‘expanded terminal sedation’ to be ‘slow euthanasia’.
PS was used to describe a deliberate switch from escalation of symptom management to a deliberate reduction in a patient’s level of consciousness in order to ease otherwise intolerable refractory suffering in ‘imminently dying’ patients. The sedation varied from light to deep depending on individual need. Some guidelines refer to ‘intermittent’ as well as ‘continuous’ sedation. Recently, because of the lack of clarity in many reports, there’s been a trend towards limiting discussion to ‘deep continuous sedation until death’ (CDSUD) – the most contentious aspect of sedation near the end of life.
Second, it may be correct that ‘the Doctrine of Double Effect (DDE) continues to shape much of the ethical and legal literature concerning end-of-life care’ (EOLC), but what about the medical literature? Would it surprise the authors if I say that, when a practicing clinician, I never agonized about ‘double effect’? As they noted, DDE was originally formulate...
As a retired palliative care physician, I am puzzled by several aspects of this article. First, authors’ choice of terminology: ‘terminal sedation’ and ‘expanded terminal sedation’. It is more than 20 years since the use of the former began to be discouraged because of perceived ambiguity, and replaced by ‘palliative sedation’ (PS)[1] – as reflected in current professional guidelines.[2] And despite dissenting voices,[3] most clinicians would probably consider ‘expanded terminal sedation’ to be ‘slow euthanasia’.
PS was used to describe a deliberate switch from escalation of symptom management to a deliberate reduction in a patient’s level of consciousness in order to ease otherwise intolerable refractory suffering in ‘imminently dying’ patients. The sedation varied from light to deep depending on individual need. Some guidelines refer to ‘intermittent’ as well as ‘continuous’ sedation. Recently, because of the lack of clarity in many reports, there’s been a trend towards limiting discussion to ‘deep continuous sedation until death’ (CDSUD) – the most contentious aspect of sedation near the end of life.
Second, it may be correct that ‘the Doctrine of Double Effect (DDE) continues to shape much of the ethical and legal literature concerning end-of-life care’ (EOLC), but what about the medical literature? Would it surprise the authors if I say that, when a practicing clinician, I never agonized about ‘double effect’? As they noted, DDE was originally formulated to exonerate someone who, when acting in self-defence, injured an assailant. The principle is universally applicable, not limited to medicine or EOLC. The practice of medicine would be impossible without it: all treatment has an inherent risk and, inevitably, sometimes things will go wrong and result in unintentional harm to a patient. However, to say that DDE can ‘justify’ a specific treatment is incorrect. Treatment is justified by necessity (not by DDE) and, accordingly, should always be proportionate to need – but this does mean it must always be ‘gradual’ and never ‘rapid’.
Doctors are committed to sustaining life when feasible and always seeking to relieve suffering. We cannot stand by and do nothing. Even so, we must work within the broad medical principles of ‘do good; avoid or minimize harm’ (beneficence and non-maleficence) [4]. Thus, I strongly agree with the authors when they say that the relief of suffering is a fundamental goal of EOLC. However, I disagree that some dying patients continue to suffer ‘despite the technical knowledge and ability to pharmacologically relieve suffering’ (my italics). The relief of suffering demands an holistic approach by health carers – embracing the physical, psychological, existential and social dimensions of personhood. Particularly in relation to existential suffering, skilled personalized psychological support is essential [5]. Drugs play only an ancillary role.
Indeed, the fictitious case history suggests that the authors – none of whom is a palliative care specialist – are unaware of the full range of possibilities available to clinicians when caring for a patient with severe unrelenting existential distress. Palliative care doctors generally are reluctant to offer CDSUD for existential suffering alone because (a) it is impossible to be sure that the suffering is refractory (generally it is responsive to holistic treatment [5]), and (b) the estimated prognosis tends to be months rather than days.
However, such patients may well benefit from respite sedation. Thus, for a young woman with end-stage cancer who was finding life intolerable (very similar to the case history in the article), I suggested that, because of her much reduced physical stamina and the stress of her illness, being awake for 16 hours a day was too long to cope with, and recommended that she had an extra dose of ‘night sedation’ immediately after lunch (in her case given as an injection of midazolam). This enabled her to sleep for 3-4 hours and wake refreshed, and able to enjoy her visitors in the evening. However, it was not just the pharmacological intervention which eased her distress: I listened to her and acknowledged her distress, and together with individually tailored psychological support, life was no longer intolerable.
Other centres have used time-limited deep sedation for up to 48 hours (often called ‘intermittent PS’) to provide a prolonged period of sleep and relaxation.[6] Such treatment is not conditional on being ‘imminently dying’ but on need. It is best considered as an optional component of standard symptom management for existential distress.
According to the authors, another reason for failing to relieve suffering at the end of life is that a dying patient may be ineligible for CDSUD because their estimated prognosis was several months. As noted above, it was originally suggested that it should be limited to the ‘imminently dying’. Giving the inevitable uncertainties of clinical practice, this was a necessarily vague term. However, with the introduction of more detailed professional guidelines, the limit was variously set at a few hours to a few days, to 1–2 weeks,[2] and sometimes unspecified (just terminally ill with a limited prognosis in Norway). In the Netherlands, when the Royal Dutch Medical Association produced guidelines with a prognostic limit of two weeks, these were ratified by the Department of Health and became a de facto legal time limit, thereby rigidly restricting clinical practice.
Over the last century, as the ability to cure has increased, medical training has become increasingly ‘biomedical’ (cure-oriented) and less ‘holistic’ (comfort-oriented). The modern standard medical paradigm – evaluate, diagnose, fix – has its limitations. Some problems cannot be fixed. This can lead to feelings of failure and an inclination to withdraw, and death may be seen as the only way to deal with the suffering. Thus, doctors who cannot, when appropriate, switch from a cure to a comfort modus operandi will tend to have an unconscious bias towards CDSUD. Certainly, many (possibly most) doctors find caring for dying patients extremely difficult [7]. As a psychiatrist observed many years ago:
‘Patients tend to be sedated when the carers have reached the limit of their resources and are no longer able to stand the patient’s problems without anxiety, impatience, guilt, anger or despair. Perhaps many of the desperate treatments in medicine can be justified by expediency, but history has the awkward habit of judging some as fashions, more helpful to the therapist than to the patient [8].
Further, there seems to be an increasing tendency for CDSUD to be regarded as a ‘one size fits all’ solution for seemingly intractable distress. In stark contrast is the testimony of one palliative care doctor:
‘Throughout a 40 year career in palliative care, I have never ordered ‘palliative sedation’… The very concept fails to capture my clinical reasoning. I do not manage delirium, shortness of breath and pain with standard treatments and then designate a symptom ‘intractable’, turning to ‘last resort’ therapy for severe cases. I do not shift my clinical goal from symptom relief to ‘sedation’, nor do I pre-determine that unconsciousness is the only means by which symptoms can be relieved [9].’
I can echo these words, as can many other holistic palliative care doctors. Inevitably, some patients become sedated as a secondary effect from the escalation of specific symptom control measures, no doubt deeply at times. However, a deliberate abrupt switch from symptom management to CDSUD is extremely rare in my experience, and almost always relates to uncontrollable hyperactive delirium in someone close to death, not to existential suffering.
In conclusion, I would suggest that there is an urgent need to investigate why, in national studies of all non-sudden deaths at home and in care homes and hospitals, the incidence of CDSUD ranges up to 25%, i.e. 10 or more times higher than that reported by several palliative care services [10]. The results should enable more focused training about EOLC, and lead to a considerable reduction in unrelieved suffering at the end of life.
Robert Twycross, MA, DM, FRCP, FRCR
Emeritus Clinical Reader in Palliative Medicine, University of Oxford
Oxford, UK
Email: rob.twycross@spc.ox.ac.uk
References
1. Broeckaert B, Nunez Olarte JM. Sedation in palliative care: facts and concepts. In: ten Have H, Clarke D, eds. The Ethics of Palliative Care. European Perspectives. Buckingham, UK: Open University Press 2002.166-180.
2. Gurschick L, Mayer DK, Hanson LC. Palliative sedation: an analysis of international guidelines and position statements. Am J Hosp Palliat Care 2015;32:660-71.
3. Cellarius V. ’Early terminal sedation’ is a distinct entity. Bioethics 2011;25(1):46–54.
4. Beauchamp T, Childress J. Principles of Biomedical Ethics (7th edition). New York:: Oxford University Press 2013.
5. Canadian Association of Psychosocial Oncology. Position Statement: Role of Psychosocial Oncology in Medical Assistance in Dying (MAID). Toronto:: CAPO 2017.
6. Morita T. Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients. J Pain Symptom Manag 2004;28:445–50.
7. Hicks MHR. Physician-assisted suicide: a review of the literature concerning practical and clinical implications for doctors. BMC Fam Pract 2006;7:39. doi:10.1186/1471-2296-7-39
8. Main T. The ailment. Brit J Med Psychol 1957;30:129-45.
9. Scott JF. The case against clinical guidelines for palliative sedation. In: Taboada P, ed. Sedation at the end-of-life: an interdisciplinary approach. Heidelberg:: Springer 2015. 143-59.
10. Vivat B, Twycross R. CSD Continuous Sedation until death; a response to changing practices in the use of continuous sedation at the end of life: a systematic review of the literature (Heijltjes et al., 2020.) J Pain Symptom Manag 63;1:e139-42.
I thank the authors for critically engaging with my paper “Ethics of vaccine refusal”. http://dx.doi.org/10.1136/medethics-2020-107026
I agree that personal autonomy does not of itself invalidate medical mandates.
I note that I do not conclude that vaccine mandates are wrong just because they violate body autonomy of vaccine refusers. Rather, ‘mandatory vaccination, immunity passports, or any other form of discrimination on the basis of the vaccination status are defeasible not because they limit basic freedoms and rights but because they discriminate against (and thus devalue) the innate constitution of all human beings.’ Moreover, the premise that vaccine mandates are justified by the value of human autonomy is logically inconsistent: ‘We must, first of all, value our kind ’as it is’ in order to bestow worth on what we ‘ought to become’, and to pursue any ontological transformation by devaluing the innate constitution of other members of the kind would, paradoxically, negate the value of our own judgement.’ https://blogs.bmj.com/medical-ethics/2021/03/01/discrimination-on-the-ba...
It seems the authors interpret the healthy, innate human constitution that includes our immune system - an act of nature that determines our objective identity - as an act of socia...
Show MoreI read with interest the article titled “Ethics of college vaccine mandates, using reasonable comparisons” by Lam LL and Nichols T1, published on Mar 30, 2023, in the Journal of Medical Ethics.
I would like to comment on statements that the above authors made that COVID-19 vaccine-caused myocarditis cases are “generally mild” and “over 90% of the hospitalized vaccine-caused myocarditis cases fully recovered within days”, and that “approximately 10% of the hospitalised cases … may have some long-term consequences”.
Among individuals with COVID-19 vaccine-associated myocarditis, the majority develop cardiac MRI abnormalities including fibrosis, which persist on follow-up, as shown below2-4. The authors’ statements that vaccine-caused myocarditis is ‘mild’ and ‘fully recovered in 90% of cases’ with only ‘10% having long-term consequences’ are misleading, since development of myocardial fibrosis in most patients with vaccine-caused myocarditis refutes these statements. Consequently, any conclusions that the authors make relying on these inaccurate statements are not supported. To promote accuracy, a correction should be issued to the above authors’ statements.
Schauer J2 et al found that at 3-8 months’ follow-up, repeat cardiac MRI showed persistent late gadolinium enhancement, an indicator of cardiac injury and fibrosis, in 68.8% (11/15) of adolescents aged 12-17 years with COVID-19 vaccine–associated myocarditis.
Cavalcante JL et al3 found that at...
Show MoreIn the U.S. a parent has a fundamental right to raise their child as they see fit, but this not an absolute right. Parents must act in the best interest of their child. The right to know your genetic identity is supported by ethical principles and existing legal frameworks. Denying individuals access to their genetic information violates their autonomy, privacy, and dignity. Lack of access to genetic identity information from birth also significantly increases the likelihood of physical and mental health issues.
Medical history and genetic makeup play an essential role in identifying health risk factors. An accurate medical history provides relevant information to the genetic information stored in our DNA. Family health history is a significant factor in determining the likelihood of developing certain diseases we carry in our DNA. Family medical history includes the types of health conditions family members have been diagnosed with, age of diagnosis, and relevant environmental or lifestyle factors. Common health conditions often included in a family medical history are heart disease, cancer, stroke, diabetes, high blood pressure, and mental health disorders.
A thorough understanding of medical history can help identify early signs of conditions that may otherwise go undetected. People base their health habits on their parents’ medical history which could, if incorrect, lead to medical conditions that might have been prevented, delays in diagnosis, or unnece...
Show MoreI thank Dr. Pennings for his thoughtful work. There are, however, further critical points to be considered when designating any arbitrary age by which a donor conceived person (DCP) can learn the identity of his/her donor. Although I agree that outcome research needs to be conducted on DCP stratified by the age at which they specifically learn their donors identities, the existing research on adoption, which parallels many of the ethical and humanistic aspects of donor conception, largely supports the idea of open adoption, where all parties are knowledgeable of the others at birth. According to one recent review, contact with the birth family results in substantially more positive outcomes for adoptees (Smith et al, 2020). Research has also shown significantly greater benefit for the adoptive parents and birth mothers in terms of satisfaction with the adoption process and post-partum adjustment in open adoption (Ge et al, 2008). This study also indicates positive experience in the new kinds of relationships created through open adoption, and the authors extend the implications of their findings to reproductive technologies such as donor conception as well.
The practicalities of enforcement of a designated age where DCPs might be permitted to learn their donor's identities also must be addressed. DCPs learning the identity of their donor through commercial DNA testing prior to the designated age is only one consideration. A second ethical dilemma would b...
Show MoreThere seems to be a disconnect between Dr. Pennings and the decades of reporting of actual experiences of parents, donors and donor-conceived people.
The first argument is that there is no evidence that a change in age will increase the total well-being of donor offspring as a group.
There is plenty of published research and years of anecdotal evidence. We invite Dr. Pennings to read not only the research, (https://indd.adobe.com/view/ac2a0b99-f67a-4768-bf8c-c48af5aeebaf) but also the reported experiences of more than 86,000 over the past 22 years on the www.DonorSiblingRegistry.com website. Many thousands of these donor-conceived people (DCP) have connected with their biological parent (donor) long before the age of 18. Many more DCP have made their stories public in hopes of shining a light on the innate human desire to know who and where we come from. Many formerly anonymous egg and sperm donors who have connected with donor children have participated in research and have also made their stories public. Additionally, several dozen egg clinics, agencies, and lawyers have been writing the Donor Sibling Registry into their parent-donor agreements for many years, connecting donors and parents right from pregnancy/birth. This is an extremely popular and successful program empowering donors and parents to decide the depth, breadth,...
Show MorePhilosophical arguments about autonomy and Medical Assistance in Dying (MAiD), such as those recently espoused by Wiebe and Mullin [1] in the BMJ Journal of Medical Ethics are deeply troubling in their implications and flawed in their considerations.
In a nutshell, Wiebe and Mullin argue that MAiD can be a ‘harm-reducing’ embrace of individual autonomy to avoid prolonging suffering in oppressed people who cannot access adequate socioeconomic resources. They speak specifically to the application of Bill C-7 MAiD, also known as not-reasonably-foreseeable-natural-death or Track 2, which is for people with chronic physical conditions causing suffering but not death. They argue that even though a person may be poor or have limited options, they can still hold and express autonomy to request and receive death. Death, in their formulation, is the least bad option for people suffering social inequality in an unjust world.
Theirs appears as the latest in a series of recent papers attempting to use autonomy arguments to justify MAiD access under an expanding range of circumstances. Davis and Mathison [2], for example, argue that a person's ‘welfare condition’ is irrelevant to the ‘moral permissibility’ of MAiD. Braun similarly argues for the ‘provision of assisted suicide (but not euthanasia) as justified when it is autonomously requested by a person, irrespective of whether this is in her best interests’ [3].
These are not new arguments.
Thirty year...
Show MoreWiebe and Mullin argue that autonomous individuals requesting MAiD because of “unjust social circumstances” or “oppression” should receive MAiD as part of a “harm reduction approach.”
To successfully defend this thesis, one would be required to defend a particular understanding of autonomy and harm. As these authors note, these terms are notoriously difficult to define. The authors assert that “acting autonomously…requires hope,” the implication being that a truly hopeless person cannot be meaningfully autonomous. The authors subsequently argue, in seeming contradiction, that “people whose reduced opportunities have led them to lose all hope” are autonomous decision makers. Their attempt to resolve this tension involves asserting that the act of pursuing MAiD is, itself, evidence of “engaged hope.” This runs directly contrary to the witness of patients in these circumstances, who cite despair and hopelessness as their motivation. It is an idiosyncratic and paternalistic (and therefore ironic) understanding of hope that suggests that patients who report a desire for MAiD because of hopelessness are, contrary to their own feelings, hopeful and therefore autonomous.
It may be helpful to think in particulars. In my work as a physician and ethicist in Canada, I have encountered the type of cases that Wiebe and Mullin allude to. In a representative case, a previously able-bodied individual experienced sudden, inexplicable neurological illness that caused significa...
Show MoreIn a recent article two Canadian ethicist/philosophers argued the appropriateness of granting early medical termination (MAiD) to those requesting it because of poverty or a lack of socioeconomic or institutional resources. These are those who would prefer to live but only with unavailable support services ranging from housing to social or rehabilitative and housing resources.
That the ethical focus should be on the a lack of resources so severe as to make life seem intolerable is not considered by these authors or most other ethicist/philosophers. They assume limited resources are fixed and institutionalized. This ignores the long history of medical and social activism begun in the mid-1800s--Rudolph Virchow being the most famous example--that focused on the failure of social support rather than the inevitable deaths that resulted. If one were to take ethics seriously, the issue would not be permissiveness but activist arguments in that earlier tradition for the care required by the fragile and vulnerable. It is thus that was lost--what Jane Adams called the 'guardianship function' when bioethicists sought successfully to disparage the ethical engagement of physicians involved in patient care.
Alas, an ethics of 'least harm' that accepts the status quo driving individuals to seek an early death is really no ethic at all. It's simply an acceptance of an unacceptable status quo that in ethics, should be the focus.
"The will of the people shall be the basis of the authority of government".Article 21 of the United Nations' 1948 Universal Declaration of Human Rights
Show MoreThe most recent feature article by Bardosh et al opposes policies requiring vaccination with SARS Cov-2 mRNA vaccines in order to matriculate at universities in the United States (1). While the exposition put forward is thorough and cogent, the article raises a much larger question dealing with forced vaccination to prevent illness in our population. Vaccination has been enormously successful in dealing with a host of human diseases (2-4). One cannot overstate the huge benefits to humanity accruing from prevention of viral diseases including smallpox, rabies, yellow fever, measles, mumps, rubella, varicella and, of course, paralytic polio. Recently developed vaccines protect against hepatitis A and B. Human papilloma virus vaccine may succeed in reducing the cancer burden in women and also in men. Typhoid, tetanus, diphtheria, pertussis, hemophilus, meningococcus, and pneumococcus vaccines have been highly successful in dealing with these bacterial pathogens (5).
All states require children to be vaccinated against certain communicable diseases as a condition for school attendance
That is understandable since school brings together a large number of individuals in very close proximity. Certainly colleges with the inevitable crowded living conditions in dormitories promote a 24 hour expo...
As a retired palliative care physician, I am puzzled by several aspects of this article. First, authors’ choice of terminology: ‘terminal sedation’ and ‘expanded terminal sedation’. It is more than 20 years since the use of the former began to be discouraged because of perceived ambiguity, and replaced by ‘palliative sedation’ (PS)[1] – as reflected in current professional guidelines.[2] And despite dissenting voices,[3] most clinicians would probably consider ‘expanded terminal sedation’ to be ‘slow euthanasia’.
Show MorePS was used to describe a deliberate switch from escalation of symptom management to a deliberate reduction in a patient’s level of consciousness in order to ease otherwise intolerable refractory suffering in ‘imminently dying’ patients. The sedation varied from light to deep depending on individual need. Some guidelines refer to ‘intermittent’ as well as ‘continuous’ sedation. Recently, because of the lack of clarity in many reports, there’s been a trend towards limiting discussion to ‘deep continuous sedation until death’ (CDSUD) – the most contentious aspect of sedation near the end of life.
Second, it may be correct that ‘the Doctrine of Double Effect (DDE) continues to shape much of the ethical and legal literature concerning end-of-life care’ (EOLC), but what about the medical literature? Would it surprise the authors if I say that, when a practicing clinician, I never agonized about ‘double effect’? As they noted, DDE was originally formulate...
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