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.
This author agrees with the claim that freedom of association is a basic moral right and that the right to have visitors stems from this freedom. This author also agrees that the discussion around visitor policy should be framed as a discussion about rights infringement. However, this author suggests that the discussion around restriction is best described as a potential conflict between two rights: freedom of association and the right to safety. Accordingly, the rights infringement could go either way.
It is reasonable to claim that people have a moral right to safety (or something like it), and it is reasonable to say that this right should be highly protected in a hospital, where the sick and injured seek treatment. If people do have a right to safety, then it follows that this right would be infringed if hospitals did not take reasonable precautions to reduce hospital-acquired infections. Limiting visitors during COVID-19 should be seen as an example of such a precaution.
To be clear, McTernan recognizes that safety is an important consideration, but she does not state that it is a right. This affects the framing of the issue. Appealing to something as a right makes it substantially harder to act against that which is protected by that right. It is for this reason that McTernan correctly argues that restricting visitation is harder when we appeal to freedom of association.
The issue, then, is one in which patients have potentially two conflicting...
This author agrees with the claim that freedom of association is a basic moral right and that the right to have visitors stems from this freedom. This author also agrees that the discussion around visitor policy should be framed as a discussion about rights infringement. However, this author suggests that the discussion around restriction is best described as a potential conflict between two rights: freedom of association and the right to safety. Accordingly, the rights infringement could go either way.
It is reasonable to claim that people have a moral right to safety (or something like it), and it is reasonable to say that this right should be highly protected in a hospital, where the sick and injured seek treatment. If people do have a right to safety, then it follows that this right would be infringed if hospitals did not take reasonable precautions to reduce hospital-acquired infections. Limiting visitors during COVID-19 should be seen as an example of such a precaution.
To be clear, McTernan recognizes that safety is an important consideration, but she does not state that it is a right. This affects the framing of the issue. Appealing to something as a right makes it substantially harder to act against that which is protected by that right. It is for this reason that McTernan correctly argues that restricting visitation is harder when we appeal to freedom of association.
The issue, then, is one in which patients have potentially two conflicting rights that pull in opposite directions. The upshot is that the solution must be a balance between the two rights, which brings us to the next point.
McTernan is against hospitals “weighing the costs and benefits and coming up with some policy on what seems a reasonable amount of access to visitors[.]”(1) And she believes that framing the issue in terms of freedom of association can achieve that goal. However, if the issue is best framed as a potential conflict between two rights, then a cost-benefit analysis (or something like it) cannot be avoided. Unless there is some way to prevent visitors from transmitting the virus, respecting one right will potentially infringe the other. Hence, we will be forced to come up with some policy based on what seems like a reasonable amount of visitation.
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.
Utilitarian ‘ethics’, as employed in this article, implicitly rejects all absolute values and associated rights, allowing for limited transgression of rights (including the right to life) for the sake of contemporaneous ‘benefits’ outweighing the ‘costs’. I maintain that this is a self-defeating paradigm; without absolute values there is no objective measure of benefits and costs, therefore no rational basis for the judgement of proportionality. In short, the utilitarian argument is logically circular and vicious. Once the veneer of proportionality is revealed as objectively ungrounded, utilitarian ethics amounts to little more than a public relations strategy for legitimising arbitrary exercises of power.
The argument from proportionality (benefits vs costs) cannot justify arbitrary violations of the right to life or the removal of the right to free medical consent, for the following reasons.
1. Vaccine mandates imply that all humans are born in a defective, inherently harmful state that must be biotechnologically augmented to allow their unrestricted participation in society, and this constitutes discrimination on the basis of healthy, innate characteristics of the human race. (This point derives from my paper published here: https://jme.bmj.com/content/48/4/240).
2. Medical consent must be free – not coerced – in order to be valid. Any discrimination against the unvaccinated is economic or social op...
Utilitarian ‘ethics’, as employed in this article, implicitly rejects all absolute values and associated rights, allowing for limited transgression of rights (including the right to life) for the sake of contemporaneous ‘benefits’ outweighing the ‘costs’. I maintain that this is a self-defeating paradigm; without absolute values there is no objective measure of benefits and costs, therefore no rational basis for the judgement of proportionality. In short, the utilitarian argument is logically circular and vicious. Once the veneer of proportionality is revealed as objectively ungrounded, utilitarian ethics amounts to little more than a public relations strategy for legitimising arbitrary exercises of power.
The argument from proportionality (benefits vs costs) cannot justify arbitrary violations of the right to life or the removal of the right to free medical consent, for the following reasons.
1. Vaccine mandates imply that all humans are born in a defective, inherently harmful state that must be biotechnologically augmented to allow their unrestricted participation in society, and this constitutes discrimination on the basis of healthy, innate characteristics of the human race. (This point derives from my paper published here: https://jme.bmj.com/content/48/4/240).
2. Medical consent must be free – not coerced – in order to be valid. Any discrimination against the unvaccinated is economic or social opportunity coercion, precluding the possibility of valid medical consent. The right to free, uncoerced medical consent is not negotiable, under any circumstances, because without it we have no 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 just from ourselves but from our children and from future generations, and we do not have the right to do this. Acquiescence to medical coercion is 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 some percentage of employees are expected to die ‘in the course of employment’ as a direct result of the mandated activity. This goes against the fundamental principles of medical ethics and workplace safety. It may be objected that infectious pathogens also kill people, but these two categories of deaths are not ethically equivalent. Infection with a pathogen for which there exists a vaccine 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 (or a privileged treatment of the vaccinated) 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.
As Sanjeev Sabhlok, an Australian economist and politician, recently wrote: “Governments are not authorised by law - by analogy - to burn down additional homes and kill unaffected people in order to save those who might be at risk of being engulfed in a bushfire.”
An earlier version of these arguments were formally submitted to the Inquiry into Public Health Amendment Bill 2021 (No 2) ACT, Australia.
While the continuing discussion on vaccine mandates is most welcome, one thing that struck me as needing more attention being dedicate to is how do we cater to workers vaccine preferences and what are the corresponding duties of employers to provide such vaccines. As I have argued elsewhere (https://www.tandfonline.com/doi/full/10.1080/20502877.2021.1959789) there is a part of the population that is not in principle opposed to vaccination in general, but might have objections to specific vaccines. Whether or not we accept vaccine mandates as ethical perhaps we need to discuss what employers should be doing to promote vaccination. While some of the authors of this paper have argued elsewhere (https://academic.oup.com/phe/article/14/3/242/6324053?login=true) that the only thing that matters is that the vaccine given is effective, particularly when a vaccine mandate is being put in place there seems to be an obligation to reduce the burden of that mandate on the workers. What I would wish to see is more debate on the obligations of employers (and the wider health service) to provide vaccines that staff deem personally acceptable. Even if there are no mandates, this might increase vaccination uptake. To return to the article at hand, it would be good if we had alternatives to influenza vaccines that were not made in he...
While the continuing discussion on vaccine mandates is most welcome, one thing that struck me as needing more attention being dedicate to is how do we cater to workers vaccine preferences and what are the corresponding duties of employers to provide such vaccines. As I have argued elsewhere (https://www.tandfonline.com/doi/full/10.1080/20502877.2021.1959789) there is a part of the population that is not in principle opposed to vaccination in general, but might have objections to specific vaccines. Whether or not we accept vaccine mandates as ethical perhaps we need to discuss what employers should be doing to promote vaccination. While some of the authors of this paper have argued elsewhere (https://academic.oup.com/phe/article/14/3/242/6324053?login=true) that the only thing that matters is that the vaccine given is effective, particularly when a vaccine mandate is being put in place there seems to be an obligation to reduce the burden of that mandate on the workers. What I would wish to see is more debate on the obligations of employers (and the wider health service) to provide vaccines that staff deem personally acceptable. Even if there are no mandates, this might increase vaccination uptake. To return to the article at hand, it would be good if we had alternatives to influenza vaccines that were not made in hen's eggs so as to cater to vegan staff and it would be good to have vaccines not developed with HEK293 (or other similar cell lines) for whatever disease will come next to cater for staff who believe the use of such cell lines to be morally dubious.
The article on the ethics of generative AI should be read in tandem with the recommendations on “Chatbots, ChatGPT, and Scholarly Manuscripts” issued by the World Association of Medical Editors (https://wame.org/page3.php?id=106).
While acknowledging the positive contribution chatbots can make to the development of texts on ethics and other academic fields, I would cite a few key negatives:
1) Chatbots like ChatGPT appear to be biased in favour of what they are proposing. This bias is evidenced in the references they provide, which uniformly support the point of view expressed by the chatbot. References opposing the point of view are not provided. This is probably inherent in the instructions in the algorithms applied by a chatbot, which must be along the lines of “provide an argument and supporting evidence”. No doubt this tendency to bias can be cured in future editions of the chatbot.
2) Chatbots have been found to invent references where there are none. This is puzzling. Why did the programmers allow that? This should be an easy fix.
3) Chatbots are only as up to date in their references as their programming (their “training”). For ChatGPT, the cut-off date is sometime in mid-2021 – anything that appeared later than their training material that is simply not in their universe. In fast-moving fields, thus, there is a strong risk that what is asserted in the chatbot’s output has been superseded by...
The article on the ethics of generative AI should be read in tandem with the recommendations on “Chatbots, ChatGPT, and Scholarly Manuscripts” issued by the World Association of Medical Editors (https://wame.org/page3.php?id=106).
While acknowledging the positive contribution chatbots can make to the development of texts on ethics and other academic fields, I would cite a few key negatives:
1) Chatbots like ChatGPT appear to be biased in favour of what they are proposing. This bias is evidenced in the references they provide, which uniformly support the point of view expressed by the chatbot. References opposing the point of view are not provided. This is probably inherent in the instructions in the algorithms applied by a chatbot, which must be along the lines of “provide an argument and supporting evidence”. No doubt this tendency to bias can be cured in future editions of the chatbot.
2) Chatbots have been found to invent references where there are none. This is puzzling. Why did the programmers allow that? This should be an easy fix.
3) Chatbots are only as up to date in their references as their programming (their “training”). For ChatGPT, the cut-off date is sometime in mid-2021 – anything that appeared later than their training material that is simply not in their universe. In fast-moving fields, thus, there is a strong risk that what is asserted in the chatbot’s output has been superseded by later evidence or discussion. But perhaps ethics is not particularly fast-moving.
4) Chatbots are plagiarists: everything they say has been said before, every idea they report has been thought already. Of course, they can be creative by mistake, along the probability lines of monkeys typing out Shakespeare. While it can be argued that this is true of many humans as well, it will take humans to recognize when a chatbot has done something original, and when you should just feed it a banana.
Murdoch et al. give an excellent account of the law in Canada relating to consent to research in children when they mature. Laws must be based on moral principles, which always have a beneficial intention and are everywhere similar for both treatment and research, for both adults and children and for the publication of identifying data.
A competent adult can accept,reject or discontinue treatment. But a doctor must only provide treatment, which is beneficial physically or emotionally. In a publicly funded service she may need to balance the benefit to the individual against the needs of the community. The .patient is always free to consult a different doctor. A patient's personal details must not be revealed without express permission.
An adult can also accept, reject or stop participation in research intended to benefit others. Again he must not be identified without permission. He cannot require the eradication of data obtained because that would harm others.
A guardian, on behalf of a child, consents to treatment or research with the same rights and restrictions. As far as possible the informed consent of the child should be obtained.. When the child reaches maturity he must be fully informed and assumes responsibility for his own care. He can discontinue beneficial treatment but cannot demand that the doctor reverses it, because that would require her to cause harm. He can change doctors. He can stop participation in research but he cannot hav...
Murdoch et al. give an excellent account of the law in Canada relating to consent to research in children when they mature. Laws must be based on moral principles, which always have a beneficial intention and are everywhere similar for both treatment and research, for both adults and children and for the publication of identifying data.
A competent adult can accept,reject or discontinue treatment. But a doctor must only provide treatment, which is beneficial physically or emotionally. In a publicly funded service she may need to balance the benefit to the individual against the needs of the community. The .patient is always free to consult a different doctor. A patient's personal details must not be revealed without express permission.
An adult can also accept, reject or stop participation in research intended to benefit others. Again he must not be identified without permission. He cannot require the eradication of data obtained because that would harm others.
A guardian, on behalf of a child, consents to treatment or research with the same rights and restrictions. As far as possible the informed consent of the child should be obtained.. When the child reaches maturity he must be fully informed and assumes responsibility for his own care. He can discontinue beneficial treatment but cannot demand that the doctor reverses it, because that would require her to cause harm. He can change doctors. He can stop participation in research but he cannot have existing data eradicated, because that would harm others..
Jurisdictions differ about the age at which children should assume adult responsibility. They may depute to ethics committees decisions about research and to the Courts other problems, such as the competence of a particular individual to make a specific decision. The Courts may adjudicate when treatment is demanded, which doctors see as harmful, unhelpful or an unfair use of resources.
Dahlquist and Kugelberg (2021) correctly notice as the many non-pharmaceutical interventions (NPIs) which have been introduced to stop or slow down the COVID-19 pandemic through coercion are not publicly justified through a scientific consensus on the factual propositions that are used to support the policies, and as such, they would be illegitimate. It has been an unfortunate circumstance of this pandemic, that not only the NPIs but also the therapeutic approaches have been the subject of media misinterpretation, at the expense of a correct debate in between the scientific community, with scientists expressing opinions not welcomed by the media routinely abused for doing their work. Examples of policies lacking every scientific support, but still approved by the media, are everywhere. To find a working solution to the pandemic, definitively we do need free science “on the top”, rather than “on the tap” or even “on a leash”, limiting the interference by governments and corporations directly and through the media serving their interests. Misinformation by media is what has made the response to COVID-19 less effective than what could have been listening to the majority of the scientists. The response to COVID-19 of many countries has been dictated so far by the media, or better by those who control the media, rather than the scientists. To find a solution, scientists should be free of this conditioning.
REFERENCES
1. Dahlquist M, Kugelberg HD. (2021). Public j...
Dahlquist and Kugelberg (2021) correctly notice as the many non-pharmaceutical interventions (NPIs) which have been introduced to stop or slow down the COVID-19 pandemic through coercion are not publicly justified through a scientific consensus on the factual propositions that are used to support the policies, and as such, they would be illegitimate. It has been an unfortunate circumstance of this pandemic, that not only the NPIs but also the therapeutic approaches have been the subject of media misinterpretation, at the expense of a correct debate in between the scientific community, with scientists expressing opinions not welcomed by the media routinely abused for doing their work. Examples of policies lacking every scientific support, but still approved by the media, are everywhere. To find a working solution to the pandemic, definitively we do need free science “on the top”, rather than “on the tap” or even “on a leash”, limiting the interference by governments and corporations directly and through the media serving their interests. Misinformation by media is what has made the response to COVID-19 less effective than what could have been listening to the majority of the scientists. The response to COVID-19 of many countries has been dictated so far by the media, or better by those who control the media, rather than the scientists. To find a solution, scientists should be free of this conditioning.
REFERENCES
1. Dahlquist M, Kugelberg HD. (2021). Public justification and expert disagreement over non-pharmaceutical interventions for the COVID-19 pandemic. J. Med. Ethics, Published Online First: 12 October 2021. doi: 10.1136/medethics-2021-107671
We should be careful of the way we talk. Human society can be described as a long conversation about what matters. In this conversation, the language we use to describe our healthcare and social care practices not only reveals our attitudes and virtues, it shapes them. In order to promote self-worth and respect for individuals who use professional services there must be an understanding of how the language used in a profession influences professionals and the individuals with whom professionals work. The term ‘ service user’ or ‘client’ may be one reluctantly used by many healthcare professionals. The language of ‘service user’ or ‘client’ is acceptable at the political level. However it may be potentially detrimental to those it labels in healthcare and may also be damaging to the underlying ethical practices of many healthcare professions.
Language is a means of communication in healthcare, it can indicate attitudes and it is an integral part of social and professional life and behaviour. The particular meaning we attach to words reveal the underlying values and attitudes we hold about the people or things to which we are referring. Language exerts hidden power as our words may be simple descriptions or they may change lives. This power may not be detected by the vulnerable/underserved in society and by those with less power . Power and status in healthcare and social care interactions determine how each party behaves e.g. The term ‘service user’ or ‘cl...
We should be careful of the way we talk. Human society can be described as a long conversation about what matters. In this conversation, the language we use to describe our healthcare and social care practices not only reveals our attitudes and virtues, it shapes them. In order to promote self-worth and respect for individuals who use professional services there must be an understanding of how the language used in a profession influences professionals and the individuals with whom professionals work. The term ‘ service user’ or ‘client’ may be one reluctantly used by many healthcare professionals. The language of ‘service user’ or ‘client’ is acceptable at the political level. However it may be potentially detrimental to those it labels in healthcare and may also be damaging to the underlying ethical practices of many healthcare professions.
Language is a means of communication in healthcare, it can indicate attitudes and it is an integral part of social and professional life and behaviour. The particular meaning we attach to words reveal the underlying values and attitudes we hold about the people or things to which we are referring. Language exerts hidden power as our words may be simple descriptions or they may change lives. This power may not be detected by the vulnerable/underserved in society and by those with less power . Power and status in healthcare and social care interactions determine how each party behaves e.g. The term ‘service user’ or ‘client’ may be described as ‘depersonalising’.
Care of people who are unable to care for themselves and compassion towards people who are vulnerable has been a basic tenet of medicine since ancient times . We need to be aware of our own language, values and attitudes to enable us to create a collaborative relationship with people that is person centred, respectful, non-judgmental, encourages personal responsibility and takes into account ethical and professional considerations.
We need to be particularly careful of language in the care of the dying. Euphemisms are place-holders for important concepts. They may disguise a practice which one might abhor if it were given another name.
Those who use the phrase ‘dying with dignity’, by avoiding the negative connotations of suicide and euthanasia /intentional killing , expect that it will be perceived as less alarming than euthanasia and assisted suicide, and that there is a problem with people being treated with ‘dignity. The use of the term ‘dying with dignity’ creates a halo of benignity and generates greater support for and muted opposition to any proposed law. Similarly, the euphemisms ‘physician assisted suicide’ , ‘medical assistance in dying’ or ‘assistance with dying’ are meant to be reassuring.
The use of ‘detoxifying language’ can lead to a situation where physicians, pharmacists, nurses and others can turn from healers/those who maintain or improve health, to those who intentionally take human life. In Nazi Germany during World War II, euphemisms were used to desensitize physicians, pharmacists, nurses and society to the horrors of a program of intentional killing /euthanasia .
The consistent application of euphemisms for medicalized killing significantly weakens arguments against assisted intentional killing of a human being.
Reference:
Mitchell CB. Of Euphemisms and Euthanasia: The Language Games of the Nazi Doctors and Some Implications for the Modern Euthanasia Movement. OMEGA - Journal of Death and Dying. 2000;40(1):255-265. doi:10.2190/K68E-
Pharmacists are essential healthcare professionals and are critical members of the whole healthcare team. Pharmacists work in varied settings such as community and hospital, hospice/palliative care industry and regulatory affairs. Regardless of where pharmacists work, and whether their roles provide direct or indirect patient care, all pharmacists contribute to safe and quality health care. Pharmacists may hold roles in many specialty areas of a healthcare system including the emergency department, infectious disease, oncology, pain management and anticoagulation management (1).
Although effective, medicines are often challenging to manage and use appropriately. This is due to a number of factors, such as increasingly complex pharmacotherapies, polypharmacy, ageing populations with multiple diseases, and limited, or inadequately coordinated resources in healthcare systems. While performing a medication review, many pharmacists work together with GPs/consultants to optimise the patient's pharmacotherapy and reduce the potential risks of polypharmacy. An example of an expected health related goal suggested by a patient during a medication review could be a desire to reduce pain. During the medication review, the patient’s pain medication could be optimised by a pharmacist to achieve this goal (1).
Pharmacists are pivotal in the lethal drug medication use process. Assisted suicide(i.e. physician assisted) will not take place without the use of medicat...
Pharmacists are essential healthcare professionals and are critical members of the whole healthcare team. Pharmacists work in varied settings such as community and hospital, hospice/palliative care industry and regulatory affairs. Regardless of where pharmacists work, and whether their roles provide direct or indirect patient care, all pharmacists contribute to safe and quality health care. Pharmacists may hold roles in many specialty areas of a healthcare system including the emergency department, infectious disease, oncology, pain management and anticoagulation management (1).
Although effective, medicines are often challenging to manage and use appropriately. This is due to a number of factors, such as increasingly complex pharmacotherapies, polypharmacy, ageing populations with multiple diseases, and limited, or inadequately coordinated resources in healthcare systems. While performing a medication review, many pharmacists work together with GPs/consultants to optimise the patient's pharmacotherapy and reduce the potential risks of polypharmacy. An example of an expected health related goal suggested by a patient during a medication review could be a desire to reduce pain. During the medication review, the patient’s pain medication could be optimised by a pharmacist to achieve this goal (1).
Pharmacists are pivotal in the lethal drug medication use process. Assisted suicide(i.e. physician assisted) will not take place without the use of medications dispensed by pharmacists.
Prescribing > Dispensing > Administration
The two quotes below ( (a.) and (b.)) taken from Professor Urban Wiesin’s very stimulating article (2) will be of interest to pharmacists worldwide.
a. “Nobody can be forced to assist with suicide, this is also the case for physicians”.
b. “Doctors ought to have a role in assisted suicide, simply on considering the facts. No other profession can ………. recognise inadequate pain therapy better. No other profession can provide more adequate information about the options for medical treatment of an illness”.
The pharmacy profession worldwide is regularly excluded from conscientious objection provisions in legislation. This exclusion denies the dignity of pharmacists as human beings and their central role in medication use.
The following questions must be asked
• Are pharmacists less dignified/ less free than doctors?
• Are pharmacists lacking in a conscience/ are they robots?
• Is the complex role of pharmacists in assisted suicide not understood / purposely ignored / not visible?
• Are conscientious pharmacists valued by society / health systems/ other professions?
Pharmacists will be at the vortex of some of society’s most controversial moral dilemmas. Pharmacist are highly trained professionals with moral, ethical and legal accountability. The human rights and dignity of pharmacists must be recognised and protected.
(1) www.fip.org/file/4757 Patient safety .Pharmacists’ role in “Medication without harm” 2020. FIP. International Pharmaceutical Federation.
(2) Wiesing U The Judgment of the German Federal Constitutional Court regarding assisted suicide: a template for pluralistic states?Journal of Medical Ethics Published Online First: 11 June 2021. doi: 10.1136/medethics-2021-107233
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...
Show MoreThis author agrees with the claim that freedom of association is a basic moral right and that the right to have visitors stems from this freedom. This author also agrees that the discussion around visitor policy should be framed as a discussion about rights infringement. However, this author suggests that the discussion around restriction is best described as a potential conflict between two rights: freedom of association and the right to safety. Accordingly, the rights infringement could go either way.
It is reasonable to claim that people have a moral right to safety (or something like it), and it is reasonable to say that this right should be highly protected in a hospital, where the sick and injured seek treatment. If people do have a right to safety, then it follows that this right would be infringed if hospitals did not take reasonable precautions to reduce hospital-acquired infections. Limiting visitors during COVID-19 should be seen as an example of such a precaution.
To be clear, McTernan recognizes that safety is an important consideration, but she does not state that it is a right. This affects the framing of the issue. Appealing to something as a right makes it substantially harder to act against that which is protected by that right. It is for this reason that McTernan correctly argues that restricting visitation is harder when we appeal to freedom of association.
The issue, then, is one in which patients have potentially two conflicting...
Show MoreAs 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...
Utilitarian ‘ethics’, as employed in this article, implicitly rejects all absolute values and associated rights, allowing for limited transgression of rights (including the right to life) for the sake of contemporaneous ‘benefits’ outweighing the ‘costs’. I maintain that this is a self-defeating paradigm; without absolute values there is no objective measure of benefits and costs, therefore no rational basis for the judgement of proportionality. In short, the utilitarian argument is logically circular and vicious. Once the veneer of proportionality is revealed as objectively ungrounded, utilitarian ethics amounts to little more than a public relations strategy for legitimising arbitrary exercises of power.
The argument from proportionality (benefits vs costs) cannot justify arbitrary violations of the right to life or the removal of the right to free medical consent, for the following reasons.
1. Vaccine mandates imply that all humans are born in a defective, inherently harmful state that must be biotechnologically augmented to allow their unrestricted participation in society, and this constitutes discrimination on the basis of healthy, innate characteristics of the human race. (This point derives from my paper published here: https://jme.bmj.com/content/48/4/240).
2. Medical consent must be free – not coerced – in order to be valid. Any discrimination against the unvaccinated is economic or social op...
Show MoreWhile the continuing discussion on vaccine mandates is most welcome, one thing that struck me as needing more attention being dedicate to is how do we cater to workers vaccine preferences and what are the corresponding duties of employers to provide such vaccines. As I have argued elsewhere (https://www.tandfonline.com/doi/full/10.1080/20502877.2021.1959789) there is a part of the population that is not in principle opposed to vaccination in general, but might have objections to specific vaccines. Whether or not we accept vaccine mandates as ethical perhaps we need to discuss what employers should be doing to promote vaccination. While some of the authors of this paper have argued elsewhere (https://academic.oup.com/phe/article/14/3/242/6324053?login=true) that the only thing that matters is that the vaccine given is effective, particularly when a vaccine mandate is being put in place there seems to be an obligation to reduce the burden of that mandate on the workers. What I would wish to see is more debate on the obligations of employers (and the wider health service) to provide vaccines that staff deem personally acceptable. Even if there are no mandates, this might increase vaccination uptake. To return to the article at hand, it would be good if we had alternatives to influenza vaccines that were not made in he...
Show MoreThe article on the ethics of generative AI should be read in tandem with the recommendations on “Chatbots, ChatGPT, and Scholarly Manuscripts” issued by the World Association of Medical Editors (https://wame.org/page3.php?id=106).
While acknowledging the positive contribution chatbots can make to the development of texts on ethics and other academic fields, I would cite a few key negatives:
1) Chatbots like ChatGPT appear to be biased in favour of what they are proposing. This bias is evidenced in the references they provide, which uniformly support the point of view expressed by the chatbot. References opposing the point of view are not provided. This is probably inherent in the instructions in the algorithms applied by a chatbot, which must be along the lines of “provide an argument and supporting evidence”. No doubt this tendency to bias can be cured in future editions of the chatbot.
Show More2) Chatbots have been found to invent references where there are none. This is puzzling. Why did the programmers allow that? This should be an easy fix.
3) Chatbots are only as up to date in their references as their programming (their “training”). For ChatGPT, the cut-off date is sometime in mid-2021 – anything that appeared later than their training material that is simply not in their universe. In fast-moving fields, thus, there is a strong risk that what is asserted in the chatbot’s output has been superseded by...
Murdoch et al. give an excellent account of the law in Canada relating to consent to research in children when they mature. Laws must be based on moral principles, which always have a beneficial intention and are everywhere similar for both treatment and research, for both adults and children and for the publication of identifying data.
A competent adult can accept,reject or discontinue treatment. But a doctor must only provide treatment, which is beneficial physically or emotionally. In a publicly funded service she may need to balance the benefit to the individual against the needs of the community. The .patient is always free to consult a different doctor. A patient's personal details must not be revealed without express permission.
An adult can also accept, reject or stop participation in research intended to benefit others. Again he must not be identified without permission. He cannot require the eradication of data obtained because that would harm others.
A guardian, on behalf of a child, consents to treatment or research with the same rights and restrictions. As far as possible the informed consent of the child should be obtained.. When the child reaches maturity he must be fully informed and assumes responsibility for his own care. He can discontinue beneficial treatment but cannot demand that the doctor reverses it, because that would require her to cause harm. He can change doctors. He can stop participation in research but he cannot hav...
Show MoreDahlquist and Kugelberg (2021) correctly notice as the many non-pharmaceutical interventions (NPIs) which have been introduced to stop or slow down the COVID-19 pandemic through coercion are not publicly justified through a scientific consensus on the factual propositions that are used to support the policies, and as such, they would be illegitimate. It has been an unfortunate circumstance of this pandemic, that not only the NPIs but also the therapeutic approaches have been the subject of media misinterpretation, at the expense of a correct debate in between the scientific community, with scientists expressing opinions not welcomed by the media routinely abused for doing their work. Examples of policies lacking every scientific support, but still approved by the media, are everywhere. To find a working solution to the pandemic, definitively we do need free science “on the top”, rather than “on the tap” or even “on a leash”, limiting the interference by governments and corporations directly and through the media serving their interests. Misinformation by media is what has made the response to COVID-19 less effective than what could have been listening to the majority of the scientists. The response to COVID-19 of many countries has been dictated so far by the media, or better by those who control the media, rather than the scientists. To find a solution, scientists should be free of this conditioning.
REFERENCES
Show More1. Dahlquist M, Kugelberg HD. (2021). Public j...
We should be careful of the way we talk. Human society can be described as a long conversation about what matters. In this conversation, the language we use to describe our healthcare and social care practices not only reveals our attitudes and virtues, it shapes them. In order to promote self-worth and respect for individuals who use professional services there must be an understanding of how the language used in a profession influences professionals and the individuals with whom professionals work. The term ‘ service user’ or ‘client’ may be one reluctantly used by many healthcare professionals. The language of ‘service user’ or ‘client’ is acceptable at the political level. However it may be potentially detrimental to those it labels in healthcare and may also be damaging to the underlying ethical practices of many healthcare professions.
Language is a means of communication in healthcare, it can indicate attitudes and it is an integral part of social and professional life and behaviour. The particular meaning we attach to words reveal the underlying values and attitudes we hold about the people or things to which we are referring. Language exerts hidden power as our words may be simple descriptions or they may change lives. This power may not be detected by the vulnerable/underserved in society and by those with less power . Power and status in healthcare and social care interactions determine how each party behaves e.g. The term ‘service user’ or ‘cl...
Show MorePharmacists are essential healthcare professionals and are critical members of the whole healthcare team. Pharmacists work in varied settings such as community and hospital, hospice/palliative care industry and regulatory affairs. Regardless of where pharmacists work, and whether their roles provide direct or indirect patient care, all pharmacists contribute to safe and quality health care. Pharmacists may hold roles in many specialty areas of a healthcare system including the emergency department, infectious disease, oncology, pain management and anticoagulation management (1).
Although effective, medicines are often challenging to manage and use appropriately. This is due to a number of factors, such as increasingly complex pharmacotherapies, polypharmacy, ageing populations with multiple diseases, and limited, or inadequately coordinated resources in healthcare systems. While performing a medication review, many pharmacists work together with GPs/consultants to optimise the patient's pharmacotherapy and reduce the potential risks of polypharmacy. An example of an expected health related goal suggested by a patient during a medication review could be a desire to reduce pain. During the medication review, the patient’s pain medication could be optimised by a pharmacist to achieve this goal (1).
Pharmacists are pivotal in the lethal drug medication use process. Assisted suicide(i.e. physician assisted) will not take place without the use of medicat...
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