Glennerster and Hodson should be congratulated on their paper tackling a very important and sensitive issue (1). They have performed a thorough analysis of legal landscape with its consequences. I feel however, that their analysis of ethical implications is lacking. Also, doctors unintentionally become second victims in this paper, appearing as those who do not care.
The United Kingdom is sadly not the only state that chose to pursue a “hostile environment” policy directed towards refugees and other migrants. Readers may recall the recent story of the Spanish humanitarian ship Open Arms who having rescued migrants in the Mediterranean Sea was denied entry into Malta and Italy (2). The rescue ships face fines of one million euros if they enter Italian coastal waters without prior permission under new legislation. Another sad example comes from Hungary, famous for building a fence along its border to keep out refugees and the toxic “Stop Soros” bill (3). A created hostility is not only a threat to life and health, but also a threat to our humanity. By ignoring vulnerability of refugees well described by the 1951 Convention (4), of which incidentally the UK is a signatory, we collectively threaten the very concept of dignity inherent in our humanity. A Polish writer and philosopher Stanisław Lem, once reflected on the roots of Holocaust perpetrated by the Nazi regime (5). He asserted that there occurred a complete reversal of moral compass for the German society. Cle...
Glennerster and Hodson should be congratulated on their paper tackling a very important and sensitive issue (1). They have performed a thorough analysis of legal landscape with its consequences. I feel however, that their analysis of ethical implications is lacking. Also, doctors unintentionally become second victims in this paper, appearing as those who do not care.
The United Kingdom is sadly not the only state that chose to pursue a “hostile environment” policy directed towards refugees and other migrants. Readers may recall the recent story of the Spanish humanitarian ship Open Arms who having rescued migrants in the Mediterranean Sea was denied entry into Malta and Italy (2). The rescue ships face fines of one million euros if they enter Italian coastal waters without prior permission under new legislation. Another sad example comes from Hungary, famous for building a fence along its border to keep out refugees and the toxic “Stop Soros” bill (3). A created hostility is not only a threat to life and health, but also a threat to our humanity. By ignoring vulnerability of refugees well described by the 1951 Convention (4), of which incidentally the UK is a signatory, we collectively threaten the very concept of dignity inherent in our humanity. A Polish writer and philosopher Stanisław Lem, once reflected on the roots of Holocaust perpetrated by the Nazi regime (5). He asserted that there occurred a complete reversal of moral compass for the German society. Clever use of rhetoric of nation, blood and land has made subsequent atrocities viewed as a correct course of action and generated what might be viewed as moral blindness. We are at risk of heading the same way.
Furthermore the paradigm of “informed consent” chosen by the authors is lukewarm, as it assumes a level playing field for a social contract between patient and doctor. This is not the case. Assuming the “consent” is the most suitable concept to use, then “valid” consent presents a better way of thinking about the problem. A valid consent demands absence of duress or fear. This may be possible for economic migrants who cross borders out of choice, but is not the case for refugees. As for access, to use the above examples, the ship has to reach a port, a safe haven for migrants to access healthcare. No doctor will refuse to care for a sick patient and the authors note the existence of that ethical obligation. But to require doctors to climb over the fence built by the legislators, paddle in boats into the sea to reach patients against the policy created by the government or go into communities to explain treacherous legal language is inappropriate and misleading. It gives an impression of apportioning the blame for the human rights crisis in evolution to the medical profession alone. The problem we face as a society is bigger than communication, health promotion or policy interpretation. It concerns our existence as moral, compassionate and responsible beings. It concerns the future of humanity.
References:
1. Glennerster R, Hodson N. Confused out of care: unanticipated consequences of a “Hostile Environment”. J Med Ethics Epub ahead of print: 22.01.2020 doi:10.1136/medethics-2019-105634. [Accessed 22.01.2020].
What stood out most for me about the findings of the paper by Derbyshire and Bockmann is that whatever our moral stance on abortion, there appears to be neuroscientific evidence that supports the distinct possibility of fetal pain before 24 weeks gestation. These findings challenge the common assumption that pain is mostly a “reflective” experience by including unreflective pain as worthy of reasonable concern (as in the case of animal pain). That consideration is one relevant factor which needs to feed into our reflections on how or whether certain abortions will be carried out.
The RCOG in its latest report on fetal pain concluded that “The experience of pain needs cognitive, sensory and affective components, as well as the necessary anatomical and physiological neural connections.” (1) Years before, along the same lines, the House of Commons Science and Technology Committee reported that “while the evidence suggests that foetuses have physiological reactions to noxious stimuli, it does not indicate that pain is consciously felt, especially not below the current upper gestational limit of abortion...these factors may be relevant to clinical practice but do not appear to be relevant to the question of abortion law.”(2) Professor Derbyshire was a member of the Working Party which put this document together and was a key witness before the STC Committee but now, in light of his researches, rejects these confident conclusions.
What stood out most for me about the findings of the paper by Derbyshire and Bockmann is that whatever our moral stance on abortion, there appears to be neuroscientific evidence that supports the distinct possibility of fetal pain before 24 weeks gestation. These findings challenge the common assumption that pain is mostly a “reflective” experience by including unreflective pain as worthy of reasonable concern (as in the case of animal pain). That consideration is one relevant factor which needs to feed into our reflections on how or whether certain abortions will be carried out.
The RCOG in its latest report on fetal pain concluded that “The experience of pain needs cognitive, sensory and affective components, as well as the necessary anatomical and physiological neural connections.” (1) Years before, along the same lines, the House of Commons Science and Technology Committee reported that “while the evidence suggests that foetuses have physiological reactions to noxious stimuli, it does not indicate that pain is consciously felt, especially not below the current upper gestational limit of abortion...these factors may be relevant to clinical practice but do not appear to be relevant to the question of abortion law.”(2) Professor Derbyshire was a member of the Working Party which put this document together and was a key witness before the STC Committee but now, in light of his researches, rejects these confident conclusions.
In the light of the findings of the new paper by Derbyshire and Bockmann, the above conclusions, which reflect the current clinical and legal practice of most abortions in the UK, look outdated at best, and motivated and suspiciously convenient at worst. Derbyshire and Bokcmann point out that fetal analgesia and anaesthesia can serve as immediate answers to the possibility of fetal pain experienced during an abortion. This does not, of course, address the ethics of abortion in itself (or of particular abortions in themselves): inevitably if an abortion is itself wrong, it will also be wrong to instruct clinicians how to perform it. However, as a matter of fact, the legal and moral line currently drawn between a fetus and a newborn is looking increasingly tenuous, and the recognition of pain at an earlier stage, while in no way decisive morally, should be an important step in opening up further debates into the status of the entity experiencing pain.
References:
1. Royal College of Obstetricians and Gynaecologists, Fetal Awareness. Review of Research and Recommendations for Practice, March 2010, p. 23.
2. House of Commons. Science and Technology Committee, Scientific Developments Relating to the Abortion Act 1967, Twelfth Report of Session 2006-07, Vol. I, p. 25.
Understanding the complexity of induced abortion in context of society, culture, health and religion is a domain that should be explored. Many studies have reported ethical consideration of this issue which may be related to parenthood, rights of the fetus and mother, harms/benefits to the fetus and mother involved in abortion of the fetus.
Fetal pain should always be put into consideration before deciding on fetal interventional procedures or deciding on aborting the fetus after 13 weeks of gestation and proper anaesthesia/analgesia should be given to the pregnant woman undergoing the procedure. The knowledge about the concept of fetal pain is important and the neurological aspects of the pain perception of the fetus should be known.
Reference:
1. Bandewar S. Exploring the ethics of induced abortion. Indian journal of medical ethics. 2005 Jan;13(1):18-21.
2. Um YR. A study of the ethics of induced abortion in Korea. Nursing ethics. 1999 Nov;6(6):506-14.
3. Lee SJ, Ralston HJ, Drey EA, Partridge JC, Rosen MA. Fetal pain: a systematic multidisciplinary review of the evidence. Jama. 2005 Aug 24;294(8):947-54.
Interpreting and translation are unregulated activities in most countries, yet interpreters and translators perform challenging work in sensitive domains, such as medicine. Interpreters and translators rarely have access to ethical infrastructure and the function and ethical boundaries of ‘interpreting practice’ are not widely known .
Translators or interpreters do not cease being human beings with human rights, when they enter their profession. All human beings, including interpreters, possess human rights and human freedoms. Conscientious objection is a right derived from the human right to freedom of conscience. Human beings (interpreters) are not machines; machines, when maintained, are on the whole very predictable and reliable. Interpreters like other human beings can be creative, self-aware, imaginative and flexible in their thinking.
Limitations exist in workplaces that cannot allow for a variety of opinions, thoughts, beliefs and conscientious positions.
Moral distress is a wide spread problem for health care providers in a range of acute and community health care settings. The understanding of moral distress may differ depending on the extent to which the problem is located in individual and/or systemic /structural factors. Healthcare staff members (as human beings) react in various ways when ethically/morally challenged: they may withdraw from ethically challenging situations; change their position; and/or continue to raise object...
Interpreting and translation are unregulated activities in most countries, yet interpreters and translators perform challenging work in sensitive domains, such as medicine. Interpreters and translators rarely have access to ethical infrastructure and the function and ethical boundaries of ‘interpreting practice’ are not widely known .
Translators or interpreters do not cease being human beings with human rights, when they enter their profession. All human beings, including interpreters, possess human rights and human freedoms. Conscientious objection is a right derived from the human right to freedom of conscience. Human beings (interpreters) are not machines; machines, when maintained, are on the whole very predictable and reliable. Interpreters like other human beings can be creative, self-aware, imaginative and flexible in their thinking.
Limitations exist in workplaces that cannot allow for a variety of opinions, thoughts, beliefs and conscientious positions.
Moral distress is a wide spread problem for health care providers in a range of acute and community health care settings. The understanding of moral distress may differ depending on the extent to which the problem is located in individual and/or systemic /structural factors. Healthcare staff members (as human beings) react in various ways when ethically/morally challenged: they may withdraw from ethically challenging situations; change their position; and/or continue to raise objections and voice concerns about situations.
Moral courage should be a highly esteemed trait displayed by individuals, who, despite adversity and personal risk, decide to act upon their ethical values during difficult ethical dilemmas. The challenge in today’s constantly changing healthcare and political environments is to be certain that professionals understand what ‘moral courage’ is, why it is important for all settings in which they practice, teach, research, and/or lead, and how moral courage can be demonstrated when ethical challenges face any interpreter or other healthcare staff member. Outcomes of moral distress, such as decisions to leave the role of interpreter (or other roles) will cause concern among health care leaders and society.
Systemic changes are needed as part of a response to apparently rising levels of moral distress in health care. It is important that all healthcare professionals, political leaders and management , value and support their peers who have the courage to stand up and speak out even when others are silent or differ in opinion.
Background:
Joanna Drugan (2017) Ethics and social responsibility in practice: interpreters and translators engaging with and beyond the professions, The Translator, 23:2, 126-142, DOI: 10.1080/13556509.2017.1281204
Dragoje, V., and D. Ellam. 2004. “Shared Perceptions of Ethics and Interpreting in Health Care.” Paper presented at the Critical Link 4 conference, Stockholm, Accessed 19 October 2015 http://www.criticallink.org/cli-5/.
Purtilo, R.B. (2000). Moral courage in times of change: Visions for the future. Journal of Physical Therapy Education, 14(3), 4 – 6.
Murray, J.S., (Sept 30, 2010) "Moral Courage in Healthcare: Acting Ethically Even in the Presence of Risk" OJIN: The Online Journal of Issues in Nursing Vol. 15, No. 3, Manuscript 2.DOI: 10.3912/OJIN.Vol15No03Man02
While I must agree the analogy of the siamese twins do provide a better understanding of some of the issues dealt with by Thomson there is one fatal law not addressed with this analogy. In law of evidence it must always be considered whether the probative value of evidence outweighs the possible prejudice using said evidence could hold. Applying that to this scenario it can be argued that the person attached to the unconscious violinist has an understanding a a frame of reference to what life was like before the incident, what life is like during the attachment and what life could be like after attachment. There is thus a clear understanding of what is being sacrificed and the changes forward this will have. The same can be said for a pregnant woman contemplating abortion. She knows what life was life before pregnancy what life is like during pregnancy and what changes to except after the birth of the child, thus enabling her to make an informed decision. The same can however not be said for the siamese twins as Elizabeth has no framework to base the standard of her life on. Elizabeth only knows what life is like attached to Catherine as she has never been independent of her. Elizabeth can thus not make an informed decision as she has no idea what life will be like without Catherine (she could become depressed for the loss of a loved one she has known her entire life, or she could end up regretting her decision much later on in life when it is too late [if a woman gets an...
While I must agree the analogy of the siamese twins do provide a better understanding of some of the issues dealt with by Thomson there is one fatal law not addressed with this analogy. In law of evidence it must always be considered whether the probative value of evidence outweighs the possible prejudice using said evidence could hold. Applying that to this scenario it can be argued that the person attached to the unconscious violinist has an understanding a a frame of reference to what life was like before the incident, what life is like during the attachment and what life could be like after attachment. There is thus a clear understanding of what is being sacrificed and the changes forward this will have. The same can be said for a pregnant woman contemplating abortion. She knows what life was life before pregnancy what life is like during pregnancy and what changes to except after the birth of the child, thus enabling her to make an informed decision. The same can however not be said for the siamese twins as Elizabeth has no framework to base the standard of her life on. Elizabeth only knows what life is like attached to Catherine as she has never been independent of her. Elizabeth can thus not make an informed decision as she has no idea what life will be like without Catherine (she could become depressed for the loss of a loved one she has known her entire life, or she could end up regretting her decision much later on in life when it is too late [if a woman gets an abortion today and in six years decides she now wants children she can most probably still get pregnant and have a child] ), and in this instance the possible prejudice outweighs the probative value.
Dr Anthony-Pillai is wrong to argue that the BMA and Royal College of Physicians’ guidance on decisions about clinically-assisted nutrition and hydration (CANH) is dangerous in overlooking the symptomatic benefit that CANH can provide.
Our guidance, which was developed over a period of 18 months, in conjunction with a range of medical, legal, and ethical experts, is professional guidance, setting out the process that needs to be followed in order to comply with the law and good practice. We are clear that the guidance should be read in conjunction with the most up-to-date clinical guidelines when reaching a decision, and that any significant divergence from established practice must be justified. It is the clinical guidance which is the most appropriate home for discussion on assessing and responding to symptomatic distress. For patients who are in a prolonged disorder of consciousness (PDOC), this will be the clinical guidelines on PDOC from the Royal College of Physicians – who were the joint authors of our guidance. (These guidelines are currently under review by the RCP’s PDOC guideline development group following recent changes to the law. The updated version is expected to be published in early 2020.)
We do not, as Dr Anthony-Pillai suggests, only “implicitly acknowledge” that CANH can provide symptomatic benefit. We explicitly state at the outset, in determining the scope of the guidance, that “clinical benefit” encapsulates not just prolonging some...
Dr Anthony-Pillai is wrong to argue that the BMA and Royal College of Physicians’ guidance on decisions about clinically-assisted nutrition and hydration (CANH) is dangerous in overlooking the symptomatic benefit that CANH can provide.
Our guidance, which was developed over a period of 18 months, in conjunction with a range of medical, legal, and ethical experts, is professional guidance, setting out the process that needs to be followed in order to comply with the law and good practice. We are clear that the guidance should be read in conjunction with the most up-to-date clinical guidelines when reaching a decision, and that any significant divergence from established practice must be justified. It is the clinical guidance which is the most appropriate home for discussion on assessing and responding to symptomatic distress. For patients who are in a prolonged disorder of consciousness (PDOC), this will be the clinical guidelines on PDOC from the Royal College of Physicians – who were the joint authors of our guidance. (These guidelines are currently under review by the RCP’s PDOC guideline development group following recent changes to the law. The updated version is expected to be published in early 2020.)
We do not, as Dr Anthony-Pillai suggests, only “implicitly acknowledge” that CANH can provide symptomatic benefit. We explicitly state at the outset, in determining the scope of the guidance, that “clinical benefit” encapsulates not just prolonging someone’s life, but also the provision of symptomatic relief (page 16 of the guidance).
With regard to how clinical information is to be used and weighed as part of the best interests decision, we are clear that all relevant clinical information should be taken into consideration. This will include information about the patient’s current condition, the quality of his or her life (from his or her perspective), and the patient’s experience of pain and distress and how it is being managed –including consideration of the symptomatic relief CANH is providing.
All of this information should be considered alongside information about the patient’s wishes, feelings, beliefs and values – past and present – to reach a decision about what is in the patient’s best interests. When the discussion is about the withdrawal of CANH, all of that information must be sufficiently robust to rebut the strong presumption that it will be in the patient’s best interests to prolong his or her life. At all times, the decision must be focused on what is right for that individual patient.
Further, an important requirement of the guidelines is that, if a decision is made to withdraw CANH, an appropriate palliative care plan must be in place to manage any symptoms that might arise. The RCP guidelines provide specific advice and palliative care protocols to ensure optimal palliative care in this situation.
The real danger to patients lies with doctors acting in a way that is not in the best interests of the patient – whether that is by continuing treatment for too long, and forcing them to continue a life that they would not want, or by withholding or withdrawing treatment too soon and depriving patients of the opportunity to live a life they would value. Our guidance aims to ensure that does not happen.
It is possible to over think and over analyse the issue of conscientious objection (CO).
CO is a right derived from the human right to Freedom of Conscience, religion and belief.
Human rights are personal.
They belong to each individual person.
It is not possible to be impersonal or impartial when one's human rights are threatened.
Human rights are invisible when they are respected.
When they are denied they become visible.
The Health (Regulation of Termination of Pregnancy )Act 2018 in Ireland has excluded me and other
healthcare workers from our human right to Freedom of Conscience and the derivate right of CO.
Doctors and nurses (and their students and trainees) in Ireland are the only healthcare workers with the legal right to CO in this Act.
I am an Irish pharmacist.
I value my human rights.
Freedom of conscience is my right as a human being.
CO is my right as a human being.
The article assumes that discerning a category of terminally ill persons will be done fairly readily, with some minor controversy that can be ignored. This is not the case. Most of us now will die after a long period of decline, from any of a long list of illnesses and conditions associated with aging. The mean length of self-care disability for persons who make it to 65 years old is about 2 years. We built the concept of a 6 month prognosis on the experience with certain highly fatal cancers, where the usual time from onset of a clearly fatal course to death was well under 6 months. This trajectory is not the experience of persons dying with various causes of frailty, as most of us will experience. We will know that our Parkinson's or Alzheimer's or frailty (or whatever) will worsen through to death, but the timing of the dying will depend mostly on rather random events - an infection, a fall, or some such event when we have so little resilience. Another way to look at it is to try to define the statistical meaning of a prognosis of less than 6 months. Is it 51% likely to die within 6 months, or 91%, or 99%? To many people, this sounds like a silly set of questions, but the difference in the population made "eligible" for PAD (or hospice) is more than 1000-fold at each of these thresholds. And the "error rate" at 1 or 2 years is very different for different illnesses. A person who has a 51% chance of dying within 6 months from a ne...
The article assumes that discerning a category of terminally ill persons will be done fairly readily, with some minor controversy that can be ignored. This is not the case. Most of us now will die after a long period of decline, from any of a long list of illnesses and conditions associated with aging. The mean length of self-care disability for persons who make it to 65 years old is about 2 years. We built the concept of a 6 month prognosis on the experience with certain highly fatal cancers, where the usual time from onset of a clearly fatal course to death was well under 6 months. This trajectory is not the experience of persons dying with various causes of frailty, as most of us will experience. We will know that our Parkinson's or Alzheimer's or frailty (or whatever) will worsen through to death, but the timing of the dying will depend mostly on rather random events - an infection, a fall, or some such event when we have so little resilience. Another way to look at it is to try to define the statistical meaning of a prognosis of less than 6 months. Is it 51% likely to die within 6 months, or 91%, or 99%? To many people, this sounds like a silly set of questions, but the difference in the population made "eligible" for PAD (or hospice) is more than 1000-fold at each of these thresholds. And the "error rate" at 1 or 2 years is very different for different illnesses. A person who has a 51% chance of dying within 6 months from a neuromuscular disease probably still has a 30% likelihood of being alive at one year - and 20% at 2 years. There's a long "tail" to the survival curve. The person who can be known to have a 51% chance of dying from lung cancer within 6 months has only a few percent chance to be alive at a year. Again, I know that readers' tolerance for these statistics is slim, but consider - can you reliably categorize most people who are living with eventually fatal illnesses as "terminally ill" at the 6 month criterion? Since most of us will be in a situation that is difficult to categorize for a very long time, it seems to me that relying on the "terminally ill" criterion has become silly - for PAD and for hospice eligibility.
Foster considers that is it not ethically nor lawfully acceptable to withdraw life-sustaining treatment from patients with Permanent Disorder of Consciousness(1) (PDOC). Though we agree the proposition has strong grounds to be made, we conclude that stating this to be the case “under any circumstances” may be oversimplifying the issue. We look at the case of W v M 2011 where withdrawal of life-sustaining treatment was denied and compare it to the cases of Airedale NHS Trust v Bland 1993 and Briggs v Briggs 2016 in which it was deemed legal to withdraw life-sustaining treatment from PDOC patients on the grounds of best interests. We also discuss some points in which Beauchamp and Childress’s ethical principles regarding ‘non-maleficience’ and ‘respect for autonomy’ do not align with Foster’s view, such as advanced directives and treatment side effects.
Withdrawal of life-sustaining treatment is unlawful
Foster makes a strong argument regarding the ambiguity surrounding the issues of removing life-sustaining treatment. Cases such as W v M 2011(2) exemplify how this uncertainty has affected the legal stance on this issue. M had suffered from a non-traumatic brain injury resulting in a ‘minimally conscious state’ (MCS), with intermittent periods of awareness. Though M was still left with the ability to have joyful experiences, she also had to endure periods of significant pain. Previously, M had expressed her wishes to never be wholly dependent o...
Foster considers that is it not ethically nor lawfully acceptable to withdraw life-sustaining treatment from patients with Permanent Disorder of Consciousness(1) (PDOC). Though we agree the proposition has strong grounds to be made, we conclude that stating this to be the case “under any circumstances” may be oversimplifying the issue. We look at the case of W v M 2011 where withdrawal of life-sustaining treatment was denied and compare it to the cases of Airedale NHS Trust v Bland 1993 and Briggs v Briggs 2016 in which it was deemed legal to withdraw life-sustaining treatment from PDOC patients on the grounds of best interests. We also discuss some points in which Beauchamp and Childress’s ethical principles regarding ‘non-maleficience’ and ‘respect for autonomy’ do not align with Foster’s view, such as advanced directives and treatment side effects.
Withdrawal of life-sustaining treatment is unlawful
Foster makes a strong argument regarding the ambiguity surrounding the issues of removing life-sustaining treatment. Cases such as W v M 2011(2) exemplify how this uncertainty has affected the legal stance on this issue. M had suffered from a non-traumatic brain injury resulting in a ‘minimally conscious state’ (MCS), with intermittent periods of awareness. Though M was still left with the ability to have joyful experiences, she also had to endure periods of significant pain. Previously, M had expressed her wishes to never be wholly dependent on anyone. Consequently, her family sought a declaration under the Mental Capacity Act 2005, stating that it was in M’s best interests to withdraw clinically assisted nutrition and hydration (CANH). Baker J argued, however, that despite M’s wish to withdraw CANH, she had the capacity for experiential interests that included significantly positive aspects. The ruling therefore supported the notion that CANH should persist, overriding her wishes. There is a medical and societal interest to preserve life and we acknowledge that in some situations it is illegal to withdraw life-sustaining treatment.
Lawful withdrawal of life-sustaining treatment
However, reflecting on the case of Airedale NHS Trust v Bland 1993(3), highlights situations where the omission of life-sustaining treatment can be lawful. Bland, a victim of the Hillsborough disaster, had been left in a persistent vegetative state (PVS) with no previously expressed wishes. Although Foster argues that the uncertainties surrounding PDOC mean that best interests can never be concluded, in the case of Bland, it was argued that a person in a PVS could not have best interests. Furthermore, the Mental Capacity Act 2005(4) states that is legal to provide a treatment when it is in the patient’s best interests. Thus, if it is no longer in the patient’s best interests to receive the treatment, it can legally be withdrawn. If the treatment were not in the patient’s best interests, this law means continuation would constitute a crime of battery and trespass against the person. Removing CANH not in the patient’s best interests would therefore be legal and consistent with duty of care.
Furthermore, in the case of Briggs v Briggs 2016(5), the Court of Protection deemed the removal of CANH to be in the best interests of a patient left in a MCS, despite knowing death was the inevitable consequence. After a road traffic accident, Briggs had been left in a MCS with no official advanced directive. However, he had previously made it known that should such a situation occur, he would not want life-sustaining treatment. Charles J argued that this was a decision that P would have made; therefore it should prevail over preservation of life. This therefore shows that continuing CANH is not the lawful course of action in every circumstance, as it may not be in the best interests of all MCS patients.
Ethical arguments
Another way to approach these issues would be to consider the ethical implications. One ethical argument, stemming from Beauchamp and Childress’s Principles of Biomedical Ethics(6) is non-maleficence, ‘do no harm’. From a legal standpoint, Bland 1993 concluded that a continuation of a treatment that was not in a patient’s best interests, without prior consent from the patient, would constitute a crime of battery. Furthermore, as CANH is a medical treatment, it also has side effects. It could be argued that if CANH is not in a patient’s best interests, then the risk of side effects outweighs the benefit of continuing. Therefore, in some situations, it is not ethically advisable to continue life-sustaining treatment.
Another of Beauchamp and Childress’s Principles of Biomedical Ethics(6) is respect for autonomy. Foster argues advanced directives cannot be applicable as it is “impossible to know whether the state in which the patient is, is in fact in anything like the state contemplated at the time the decision was made”(1). However, taking this stance would mean that advance directives for unconscious patients, whether PDOC or not, could never be followed. It could be argued that all unconscious patients are in a different state to the one they were in when they contemplated their advanced decision. Taking this view is wholly paternalistic and undermines the patient’s ability to demonstrate bodily autonomy through an advanced directive. Not only does rejecting a patient’s bodily autonomy violate the humanity of the patient, it also reduces faith in the medical profession(7).
It is worth noting that the ethics of the other two principles of Beauchamp and Childress’s biomedical ethics, justice and beneficence, are much more complicated to discuss as these pertain to resource allocation. As Foster rightfully mentions, it is expensive to maintain patients in PDOC. However, discussing resource allocation would mean having to argue that the interests of other patients override the interests of PDOC patients. Therefore, we agree that if this argument were to be made, there would need to be revision of the law regarding societal interest to preserve life.
Summary
We agree that in some scenarios it may be unethical or illegal to withdraw life-sustaining treatment, however we also believe that it is an oversimplification to say that it is “never” ethical or legal. In some legal cases, such as Airedale NHS Trust v Bland 1993 and Briggs v Briggs 2016, it has been ruled that withdrawal of CANH from a patient in a PDOC is legal. Ethically, it could be argued that in some situations, continuing life-sustaining treatment violates the principles of non-maleficence and respect for autonomy. Whilst perhaps society has a fear of death and a societal interest to preserve life, it is important that these judgments do not affect our ability to objectively act in a legal and ethical way. Withdrawal of life-sustaining treatment is a complicated issue so we believe it is important not to over-simply the matter by claiming that it is never legal or ethical.
References
[1] Foster C. It is never lawful or ethical to withdraw life-sustaining treatment from patients with prolonged disorders of consciousness. Journal of Medical Ethics. Published Online: 14 February 2019. doi: 10.1136/medethics-2018-105250
[2] Mullock A. Best interests and the sanctity of life after W v M. Journal of Medical Ethics. 2013 Sep;39(9):553-4. doi: 10.1136/medethics-2012-100907
[3] Szawarski P, Kakar V. Classic Cases Revisited: Anthony Bland and Withdrawal of Artificial Nutrition and Hydration in the UK. Journal of the Intensive Care Society. 2012;13(2):126-129. doi:10.1177/175114371201300209.
[5] Kitzinger J, Kitzinger C, Cowley J. When ‘Sanctity of Life’ and ‘Self-Determination’ clash: Briggs versus Briggs [2016] EWCOP 53 – implications for policy and practice. Journal of Medical Ethics. 2017;43:446-449. doi: 10.1136/medethics-2016-104118.
[6] Beauchamp T, Childress J. Principles of biomedical ethics, 5th ed. NY: Oxford University Press; 2001.
[7] Murgic L, Hébert PC, Sovic S, Pavlekovic G. Paternalism and autonomy: views of patients and providers in a transitional (post-communist) country. BMC Med Ethics. 2015;16(1):65. doi:10.1186/s12910-015-0059-z
Glennerster and Hodson should be congratulated on their paper tackling a very important and sensitive issue (1). They have performed a thorough analysis of legal landscape with its consequences. I feel however, that their analysis of ethical implications is lacking. Also, doctors unintentionally become second victims in this paper, appearing as those who do not care.
The United Kingdom is sadly not the only state that chose to pursue a “hostile environment” policy directed towards refugees and other migrants. Readers may recall the recent story of the Spanish humanitarian ship Open Arms who having rescued migrants in the Mediterranean Sea was denied entry into Malta and Italy (2). The rescue ships face fines of one million euros if they enter Italian coastal waters without prior permission under new legislation. Another sad example comes from Hungary, famous for building a fence along its border to keep out refugees and the toxic “Stop Soros” bill (3). A created hostility is not only a threat to life and health, but also a threat to our humanity. By ignoring vulnerability of refugees well described by the 1951 Convention (4), of which incidentally the UK is a signatory, we collectively threaten the very concept of dignity inherent in our humanity. A Polish writer and philosopher Stanisław Lem, once reflected on the roots of Holocaust perpetrated by the Nazi regime (5). He asserted that there occurred a complete reversal of moral compass for the German society. Cle...
Show MoreDear Editor,
What stood out most for me about the findings of the paper by Derbyshire and Bockmann is that whatever our moral stance on abortion, there appears to be neuroscientific evidence that supports the distinct possibility of fetal pain before 24 weeks gestation. These findings challenge the common assumption that pain is mostly a “reflective” experience by including unreflective pain as worthy of reasonable concern (as in the case of animal pain). That consideration is one relevant factor which needs to feed into our reflections on how or whether certain abortions will be carried out.
The RCOG in its latest report on fetal pain concluded that “The experience of pain needs cognitive, sensory and affective components, as well as the necessary anatomical and physiological neural connections.” (1) Years before, along the same lines, the House of Commons Science and Technology Committee reported that “while the evidence suggests that foetuses have physiological reactions to noxious stimuli, it does not indicate that pain is consciously felt, especially not below the current upper gestational limit of abortion...these factors may be relevant to clinical practice but do not appear to be relevant to the question of abortion law.”(2) Professor Derbyshire was a member of the Working Party which put this document together and was a key witness before the STC Committee but now, in light of his researches, rejects these confident conclusions.
In the light...
Show MoreDear Editor,
Understanding the complexity of induced abortion in context of society, culture, health and religion is a domain that should be explored. Many studies have reported ethical consideration of this issue which may be related to parenthood, rights of the fetus and mother, harms/benefits to the fetus and mother involved in abortion of the fetus.
Fetal pain should always be put into consideration before deciding on fetal interventional procedures or deciding on aborting the fetus after 13 weeks of gestation and proper anaesthesia/analgesia should be given to the pregnant woman undergoing the procedure. The knowledge about the concept of fetal pain is important and the neurological aspects of the pain perception of the fetus should be known.
Reference:
1. Bandewar S. Exploring the ethics of induced abortion. Indian journal of medical ethics. 2005 Jan;13(1):18-21.
2. Um YR. A study of the ethics of induced abortion in Korea. Nursing ethics. 1999 Nov;6(6):506-14.
3. Lee SJ, Ralston HJ, Drey EA, Partridge JC, Rosen MA. Fetal pain: a systematic multidisciplinary review of the evidence. Jama. 2005 Aug 24;294(8):947-54.
Interpreting and translation are unregulated activities in most countries, yet interpreters and translators perform challenging work in sensitive domains, such as medicine. Interpreters and translators rarely have access to ethical infrastructure and the function and ethical boundaries of ‘interpreting practice’ are not widely known .
Translators or interpreters do not cease being human beings with human rights, when they enter their profession. All human beings, including interpreters, possess human rights and human freedoms. Conscientious objection is a right derived from the human right to freedom of conscience. Human beings (interpreters) are not machines; machines, when maintained, are on the whole very predictable and reliable. Interpreters like other human beings can be creative, self-aware, imaginative and flexible in their thinking.
Limitations exist in workplaces that cannot allow for a variety of opinions, thoughts, beliefs and conscientious positions.
Moral distress is a wide spread problem for health care providers in a range of acute and community health care settings. The understanding of moral distress may differ depending on the extent to which the problem is located in individual and/or systemic /structural factors. Healthcare staff members (as human beings) react in various ways when ethically/morally challenged: they may withdraw from ethically challenging situations; change their position; and/or continue to raise object...
Show MoreHelp wanted. No Irish need apply.
https://www.irishtimes.com/news/ireland/irish-news/new-york-times-finds-...
Are we to expect the following?
Healthcare staff wanted. No one with a conscientious objection need apply.
While I must agree the analogy of the siamese twins do provide a better understanding of some of the issues dealt with by Thomson there is one fatal law not addressed with this analogy. In law of evidence it must always be considered whether the probative value of evidence outweighs the possible prejudice using said evidence could hold. Applying that to this scenario it can be argued that the person attached to the unconscious violinist has an understanding a a frame of reference to what life was like before the incident, what life is like during the attachment and what life could be like after attachment. There is thus a clear understanding of what is being sacrificed and the changes forward this will have. The same can be said for a pregnant woman contemplating abortion. She knows what life was life before pregnancy what life is like during pregnancy and what changes to except after the birth of the child, thus enabling her to make an informed decision. The same can however not be said for the siamese twins as Elizabeth has no framework to base the standard of her life on. Elizabeth only knows what life is like attached to Catherine as she has never been independent of her. Elizabeth can thus not make an informed decision as she has no idea what life will be like without Catherine (she could become depressed for the loss of a loved one she has known her entire life, or she could end up regretting her decision much later on in life when it is too late [if a woman gets an...
Show MoreDr Anthony-Pillai is wrong to argue that the BMA and Royal College of Physicians’ guidance on decisions about clinically-assisted nutrition and hydration (CANH) is dangerous in overlooking the symptomatic benefit that CANH can provide.
Our guidance, which was developed over a period of 18 months, in conjunction with a range of medical, legal, and ethical experts, is professional guidance, setting out the process that needs to be followed in order to comply with the law and good practice. We are clear that the guidance should be read in conjunction with the most up-to-date clinical guidelines when reaching a decision, and that any significant divergence from established practice must be justified. It is the clinical guidance which is the most appropriate home for discussion on assessing and responding to symptomatic distress. For patients who are in a prolonged disorder of consciousness (PDOC), this will be the clinical guidelines on PDOC from the Royal College of Physicians – who were the joint authors of our guidance. (These guidelines are currently under review by the RCP’s PDOC guideline development group following recent changes to the law. The updated version is expected to be published in early 2020.)
We do not, as Dr Anthony-Pillai suggests, only “implicitly acknowledge” that CANH can provide symptomatic benefit. We explicitly state at the outset, in determining the scope of the guidance, that “clinical benefit” encapsulates not just prolonging some...
Show MoreIt is possible to over think and over analyse the issue of conscientious objection (CO).
CO is a right derived from the human right to Freedom of Conscience, religion and belief.
Human rights are personal.
They belong to each individual person.
It is not possible to be impersonal or impartial when one's human rights are threatened.
Human rights are invisible when they are respected.
When they are denied they become visible.
The Health (Regulation of Termination of Pregnancy )Act 2018 in Ireland has excluded me and other
healthcare workers from our human right to Freedom of Conscience and the derivate right of CO.
Doctors and nurses (and their students and trainees) in Ireland are the only healthcare workers with the legal right to CO in this Act.
I am an Irish pharmacist.
I value my human rights.
Freedom of conscience is my right as a human being.
CO is my right as a human being.
This is personal.
This is very simple.
The article assumes that discerning a category of terminally ill persons will be done fairly readily, with some minor controversy that can be ignored. This is not the case. Most of us now will die after a long period of decline, from any of a long list of illnesses and conditions associated with aging. The mean length of self-care disability for persons who make it to 65 years old is about 2 years. We built the concept of a 6 month prognosis on the experience with certain highly fatal cancers, where the usual time from onset of a clearly fatal course to death was well under 6 months. This trajectory is not the experience of persons dying with various causes of frailty, as most of us will experience. We will know that our Parkinson's or Alzheimer's or frailty (or whatever) will worsen through to death, but the timing of the dying will depend mostly on rather random events - an infection, a fall, or some such event when we have so little resilience. Another way to look at it is to try to define the statistical meaning of a prognosis of less than 6 months. Is it 51% likely to die within 6 months, or 91%, or 99%? To many people, this sounds like a silly set of questions, but the difference in the population made "eligible" for PAD (or hospice) is more than 1000-fold at each of these thresholds. And the "error rate" at 1 or 2 years is very different for different illnesses. A person who has a 51% chance of dying within 6 months from a ne...
Show MoreAbstract
Foster considers that is it not ethically nor lawfully acceptable to withdraw life-sustaining treatment from patients with Permanent Disorder of Consciousness(1) (PDOC). Though we agree the proposition has strong grounds to be made, we conclude that stating this to be the case “under any circumstances” may be oversimplifying the issue. We look at the case of W v M 2011 where withdrawal of life-sustaining treatment was denied and compare it to the cases of Airedale NHS Trust v Bland 1993 and Briggs v Briggs 2016 in which it was deemed legal to withdraw life-sustaining treatment from PDOC patients on the grounds of best interests. We also discuss some points in which Beauchamp and Childress’s ethical principles regarding ‘non-maleficience’ and ‘respect for autonomy’ do not align with Foster’s view, such as advanced directives and treatment side effects.
Withdrawal of life-sustaining treatment is unlawful
Foster makes a strong argument regarding the ambiguity surrounding the issues of removing life-sustaining treatment. Cases such as W v M 2011(2) exemplify how this uncertainty has affected the legal stance on this issue. M had suffered from a non-traumatic brain injury resulting in a ‘minimally conscious state’ (MCS), with intermittent periods of awareness. Though M was still left with the ability to have joyful experiences, she also had to endure periods of significant pain. Previously, M had expressed her wishes to never be wholly dependent o...
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