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Kitzinger et al argued in favor of applying “the ‘holistic’ approach outlined in the Briggs judgment” to ascertain, in Court and ‘on the floor’, what in accordance with the Mental Capacity Act 2005 (MCA) ought to be considered a patient’s best-interest assessment.[1] In Briggs versus Briggs [2016] EWCOP 53 , “all parties were required to address the question of [Paul Briggs’s] ‘best interests rather than seeking to apply the standard of ‘substituted judgment’.”[2] Authors correctly pointed out that the MCA mandates, next to consideration of a person’s past and present wishes and feelings, values and beliefs, the inclusion of other relevant circumstances, i.e., diagnosis, prognosis and ‘sanctity of life’. Kitzinger et al postulated that this holistic approach to the best interest standard not only should be the preferred pathway over that of the ‘substituted judgment’ standard, but, if widely accepted, would make a positive contribution to “the texture and quality of best-interest decision making about these patients [with disorders of consciousness] ‘on the ground’”.[1] They further highlighted the significance of the Briggs judgment because of “the great weight [Mr Justice] Charles J gave the person’s own views, even when set against ‘sanctity of life’.”
There are theoretical and practical problems with Kitzinger et al’s position.
First, it is incorrect to describe the Briggs case as the clash of ‘sanctity of life’ and ‘self-determinat...
Kitzinger et al argued in favor of applying “the ‘holistic’ approach outlined in the Briggs judgment” to ascertain, in Court and ‘on the floor’, what in accordance with the Mental Capacity Act 2005 (MCA) ought to be considered a patient’s best-interest assessment.[1] In Briggs versus Briggs [2016] EWCOP 53 , “all parties were required to address the question of [Paul Briggs’s] ‘best interests rather than seeking to apply the standard of ‘substituted judgment’.”[2] Authors correctly pointed out that the MCA mandates, next to consideration of a person’s past and present wishes and feelings, values and beliefs, the inclusion of other relevant circumstances, i.e., diagnosis, prognosis and ‘sanctity of life’. Kitzinger et al postulated that this holistic approach to the best interest standard not only should be the preferred pathway over that of the ‘substituted judgment’ standard, but, if widely accepted, would make a positive contribution to “the texture and quality of best-interest decision making about these patients [with disorders of consciousness] ‘on the ground’”.[1] They further highlighted the significance of the Briggs judgment because of “the great weight [Mr Justice] Charles J gave the person’s own views, even when set against ‘sanctity of life’.”
There are theoretical and practical problems with Kitzinger et al’s position.
First, it is incorrect to describe the Briggs case as the clash of ‘sanctity of life’ and ‘self-determination’. In this case, there was no self-determination because there was no advance directive that clearly expressed the patient’s preference that, if affected by a disorder of consciousness, assisted nutrition and hydration (ANH) is to be discontinued. It was a third-party determination on behalf of Paul Briggs of the acceptability of future quality of life and judgment what was to be in his best interests. Therefore, Briggs versus Briggs [2016] EWCOP 53 should be referred to as the clash of ‘sanctity of life’ and ‘third-party determination’ of best interests on behalf of a disabled, incapacitated person. Kitzinger et al incorrectly labeled this as a logical extension of self-determination or autonomy. [1] They validated their claim of superiority of the holistic approach to a best-interest assessment over ‘sanctity of life’ by quoting a single article from 1973 calling the concept of ‘sanctity of life’ “impossibly vague and misleading’.” [3] However, the concept of ‘best interests’ is no less vague than the concept of ‘sanctity of life’ in determining and justifying treatment withdrawal. A best-interest assessment of the acceptability of future quality of life on behalf of a disabled incapacitated person is necessarily subjective. Even with today’s dominance of principlism in medical ethics, none of the four principles in this theory (autonomy, beneficence, non-maleficence, and justice) are clear, unambiguous, and uncontested. For instance, the notion of autonomy, which constitutes the foundation underlying the moral and legal notion of the best-interest standard, has evolved over time and continues to do so with significant moral, legal, and social implications.[4] Philosophical issues on the remaining three principles continue to be discussed. The question is not if treatment can be withdrawn but under which circumstances it is justified. In first-person decision-making, individuals have the right to refuse treatment either through in-person communication or, if unable to express their opinion, through clear expression of preferences of that particular treatment in advance directives. Considering the weight of such decision in life-sustaining treatment, it appears that the judgment in W v M & Ors (2011) EWHC 2443 (Fam) requiring clear and convincing evidence that the person had specifically directed not to have ANH administered in case of the presence of a disorder of consciousness is indeed more consistent with the medical principle of first do-no-harm. In absence of an unambiguous, substantive conception of what constitutes ‘the best-interest’ of human beings, mandating clear and convincing evidence of a person’s wishes in matters of life and death reflects without a doubt commitment to both the principle of sanctity of life and that of respect for persons. As it stands, adherence to the ‘sanctity of life’ standard and practicing medicine in accordance with the Hippocratic Oath both uphold the moral obligation of practitioners to avoid inflicting harm on patients.
Second, as the concept of ‘best interests’ in MCA is grounded in a third-party rather a first-person real time determination of acceptability of future quality of life, its interpretation legitimizes also nonconsensual treatment withdrawal in persons with severe disabilities. Many survivors of serious illnesses adapt to their new reality, cope with severe disabilities, and are satisfied with their quality of life even if greatly diminished from the past. [5-8] This means that reliance on previously held opinions can misrepresent real-time or future preferences of individuals with serious disabilities. As has been argued elsewhere, treatment withdrawal decisions based on third-party determination of best interests can result in fatal errors.[9] Although Kitzinger et al endorsed the introduction of a holistic approach to the third-party determination of best interests, they failed to provide a convincing rationale demonstrating that it (1) provides a more reliable (and therefore a superior) instrument for making substitute end-of-life decisions, and (2) results in decisions that are more closely in sync with the principle of respect for autonomy. The basic tenet of “do-no-harm” in medicine appears to provide more practical guidance towards decision-making under these conditions.
Third, some commentators have asserted that the ‘sanctity of life’ value in medicine, commonly associated with commitment to religious values, should not be allowed to stonewall secular determination of best interests.[10] It is clear to many that withdrawing of ANH is the proximate cause of a pre-planned death and, thus, a form of physician-assisted death. In other cases, where a patient is dependent on both mechanical ventilation and ANH (e.g., The Supreme Court In the matter of Charlie Gard https://www.supremecourt.uk/news/latest-judgment-in-the-matter-of-charli... ) withdrawing these life-sustaining interventions will lead, for the same reasons, lead to an act of physician-assisted death. In reality, the observed clash is the consequence of secular intolerance and exclusion of equally respected religious values in a pluralistic society.
From a practical perspective, without additional legislative revisions in the MCA to protect religious values, the best-interest standard and a holistic approach to assessing these interests has now been transformed into a widening of a backdoor approach to justifying nonconsensual euthanasia of vulnerable individuals. The best-interests standard with an expanded domain of potential surrogate decision makers increases the potential for legitimizing a “kill switch” in the MCA.[11] Finally, patients’ religious beliefs and values should be taken into account to ensure that surrogate decisions made reflect commitment to the respect for autonomy.
1. 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. J Med Ethics.2017; 43(7):446-449.
3. Clouser K. "the sanctity of life": An analysis of a concept. Ann Intern Med.1973; 78(1):119-125.
4. Saad TC. The history of autonomy in medicine from antiquity to principlism. Med Health Care Philos.2017; First Online:10 June 2017. DOI: 10.1007/s11019-017-9781-2.
5. Antonak RF, Livneh H. Psychosocial adaptation to disability and its investigation among persons with multiple sclerosis. Soc. Sci. Med.1995; 40(8):1099-1108.
6. Lulé D, Zickler C, Häcker S, Bruno MA, Demertzi A, Pellas F, et al. Life can be worth living in locked-in syndrome. Prog. Brain Res.2009; 177:339-351.
7. Demertzi A, Jox RJ, Racine E, Laureys S. A European survey on attitudes towards pain and end-of-life issues in locked-in syndrome. Brain Inj.2014; 28(9):1209-1215.
8. Buono VL, Corallo F, Bramanti P, Marino S. Coping strategies and health-related quality of life after stroke. Journal of Health Psychology.2017; 22(1):16-28.
9. Napier S. Perception of Value and the Minimally Conscious State. HEC Forum.2015; 27(3):265-286.
10. Brierley J, Linthicum J, Petros A. Should religious beliefs be allowed to stonewall a secular approach to withdrawing and withholding treatment in children? J Med Ethics.2013; 39(9):573-577.
Rivera Lopez in his astounding article [1] proposes the duty to kill and is happy not to consider the counter arguments, but just follow his line of thought!!
He is among those prepared to cross the line of taking a life or at least consider such acts in theory. His view demonstrates a very restricted outlook on life, seeing nothing beyond the concrete. It seems a bit drastic or simplistic to get rid of problems by getting rid of the people who have them. If treatment or life itself is burdensome, it can be lightened in many more caring ways. As a GP, I see what a dying person can give to others and the intangible benefits of suffering; in bringing of the family together, acknowledging the heartbreak and drawing out good in others by accompanying and self-giving. I have also seen destruction of the joy in a family by suicide and the feeling of failure among those left behind. Human dignity is found in being supported and loved, not being killed.
Another consideration is that we do not know how those who cross the line will bear up psychologically after many years of this justified killing. Doctors in Ontario, where euthanasia has been permitted by law last year, are backing out as they find that they “go through one experience and it’s just overwhelming, it’s too difficult, and those are the ones who say, ‘take my name off the list. I can’t do any more.’ ” [2] Are we prepared to risk making killing part of the medical practice and wait to see the damage?
Rivera Lopez in his astounding article [1] proposes the duty to kill and is happy not to consider the counter arguments, but just follow his line of thought!!
He is among those prepared to cross the line of taking a life or at least consider such acts in theory. His view demonstrates a very restricted outlook on life, seeing nothing beyond the concrete. It seems a bit drastic or simplistic to get rid of problems by getting rid of the people who have them. If treatment or life itself is burdensome, it can be lightened in many more caring ways. As a GP, I see what a dying person can give to others and the intangible benefits of suffering; in bringing of the family together, acknowledging the heartbreak and drawing out good in others by accompanying and self-giving. I have also seen destruction of the joy in a family by suicide and the feeling of failure among those left behind. Human dignity is found in being supported and loved, not being killed.
Another consideration is that we do not know how those who cross the line will bear up psychologically after many years of this justified killing. Doctors in Ontario, where euthanasia has been permitted by law last year, are backing out as they find that they “go through one experience and it’s just overwhelming, it’s too difficult, and those are the ones who say, ‘take my name off the list. I can’t do any more.’ ” [2] Are we prepared to risk making killing part of the medical practice and wait to see the damage?
This is a thought provoking paper but I wonder if it is founded on a false premise. It strikes me that a conscientious objection only applies if the surgeon has an obligation to undertake a cosmetic surgery procedure. If there is no obligation they are simply declining to carry out the procedure. Presumably this may be because the surgeon decides the procedure is not in the best interests of the patient. Since the surgeon is primarily an expert in physical, bodily function they should base their judgement of best interest on those grounds. Of course, if this reasoning is sound, fewer cosmetic procedures should perhaps be performed than currently are.
There are surely situations where responses of disgust and other
reactions to extreme violence must be respected. How much they effect
the justice system as well as the medical professionals' ability to act
strictly according to laws and ethical guidelines is probably difficult to
investigate. The case of Peter Sutcliffe - a violent mass murderer in UK
is not quite the same scenario as the article describes but it is...
There are surely situations where responses of disgust and other
reactions to extreme violence must be respected. How much they effect
the justice system as well as the medical professionals' ability to act
strictly according to laws and ethical guidelines is probably difficult to
investigate. The case of Peter Sutcliffe - a violent mass murderer in UK
is not quite the same scenario as the article describes but it is
questionable in some ways whether the horror outweighed impartiality in
law and how he was treated medically.
Peter Sutcliffe was sentenced initially to a life sentence for his
terribly cruel crimes. Other prisoners have described how viciously he
was treated in jail and that this was entirely predictable. He was not
diagnosed as mentally ill when sentenced yet three years later was
diagnosed with paranoid schizophrenia. It is well known that solitary
confinement and constant fear can induce mental illness. Was it right to
incarcerate him in such conditions?
He was then after three years transferred to a secure psychiatric
institution where against his will he was medicated and force fed. He
constantly stated that he wished to die by refusing food and water. After
35 years in the institution he was diagnosed as no longer
mentally ill. How did the treatment, which he resisted bring about such a
change - is there a way of knowing whether such an illness would run it's
course after such a long period of time?
Peter Sutcliffe is now again in prison and at risk presumably of being
made ill again - as that was the consequence of the way he was treated the
first time he was imprisoned. Is he now allowed to enforce his decision
to refuse food and drink in order to die and avoid further what he
considers inhumane and cruel treatment? Does he have the right to make an
Advance Directive?
Obviously I am just flagging up issues that are difficult to think about
as his crimes were so horrendous - yet has his treatment been strictly
according to the law or has the medical profession and the justice system
been unable to truly respect the rights of such a man not to be subjected
to cruel and inhumane treatment himself.
Earp and Moen demonstrate the absence of a relevant difference
between the use of prostitutes by disabled people and by shy, ugly,
libidinous, able-bodied people, and the impossibility of circumscribing
the latter[1]. This is incorporated into a case for the full legalisation
of prostitution based on: (a) the absence of a justification for its
prohibition; and (b) the "needs" it meets. We posit that (b) misrepresents
pro...
Earp and Moen demonstrate the absence of a relevant difference
between the use of prostitutes by disabled people and by shy, ugly,
libidinous, able-bodied people, and the impossibility of circumscribing
the latter[1]. This is incorporated into a case for the full legalisation
of prostitution based on: (a) the absence of a justification for its
prohibition; and (b) the "needs" it meets. We posit that (b) misrepresents
prostitution and then outline a response to (a).
Earp and Moen develop Thomsen's argument[2] as follows:
(1) Many or most persons have a sexuality that generates strong needs
for sexual relations, and
(2) Some disabled [or any] persons are partially or entirely incapable of
satisfying this need except through the purchase of sexual services from a
prostitute.
(C) There is a prima facie case for legalising prostitution.
The notion that "the purchase of sexual services from a prostitute"
is a response to "strong needs for sexual relations" is problematic.
Evidence suggests that men who use prostitutes do not consider themselves
to be satisfying such a "need". Punternet.com, a website where men rate
their experiences with prostitutes, found that only 28% of punters[i]
considered themselves unable to find "free sex"[3]. Similarly only 1 in 5
London punters "[c]an't get what he wants sexually or emotionally in his
current relationship"[4]. Men use prostitutes not out of necessity but
choice. Outside the simple framework Earp and Moen create, the purported
"need for sexual relations" is not fulfilled by the use of a prostitute.
This desire is subsidiary to the human drive for social intimacy, to which
the mutual giving and receiving of sex contributes. As McKinnon states,
"The consideration for sex is sex (and if there's some other consideration
then it's something else)"[5]. The Crown Prosecution Service of England
and Wales considers it appropriate that "prostitution is addressed as
sexual exploitation"[6]. When 55% of men who use prostitutes believe that
the majority of women in prostitution have been "lured, tricked or
trafficked"[4], this confirms that the behaviour is usually a gratuitous
act of conscious abuse.
Given the facts about prostitution, the Nordic model of
legislation[5] mentioned by Thomsen[2] is a more appropriate way forward.
Indeed, this model deals more effectively with the authors' presented
concerns. Earp and Moen correctly point out that prohibition does not make
women safer[1]. Criminalising women makes it harder for them to leave
prostitution and find a safer way of living. In many settings they are
vulnerable to police corruption and violence[5]. This must end.
Concurrently, it is reasonable to focus on, and even consider punishing,
punters. Just as Earp and Moen proposed using the law as a tool to change
social attitudes, this model transfers the stigma away from prostituted
women - recognising the complexity of their situation - and instead
stigmatises male customers who recklessly participate in abuse. The
combination of punter stigma and sanction is likely to reduce demand and
in turn decrease trafficking[5]. Analysis of 150 countries found that the
degree to which full legalisation expands punter demand far outstrips any
increase in legal prostitutes. Countries with legalized prostitution have
experienced greater human trafficking inflow[7].
Earp and Moen claim that people are usually granted autonomy
regarding choice of work[1]. Trafficked women are evidently denied this,
but autonomy can also be influenced and diminished by external factors
commonly associated with prostitution such as adverse childhood
experiences and grooming. Prospective cohort research shows that child
sexual abuse victims are more likely to be prostituted in adulthood than
victims of other abuse and neglect [8]. When Earp and Moen speculate "it
is likely to be people who are already in very difficult situations who
would find it worthwhile to sell sexual services"[1], perhaps that "very
difficult situation" includes living with the long-term psychosocial
consequences of sexual abuse and trauma. However, they are wrong to assert
that reliving this confusing cycle is a positive act of autonomy; it is an
act more redolent of a person who needs care, compassion and support to re
-establish control over her life. The Nordic Model involves resourcing and
training women to find other sources of income, thus expanding their
financial autonomy[7]. The authors may not agree that women deserve active
help to exit prostitution but, given the extent of trafficking and abuse
in the sex industry, this ought to be a priority. Commitment to autonomy
of choice of work would include education, training, and resourcing to
ensure the choice of prostitution was truly free.
The so-called "need for sexual relations", disabled or otherwise, is
penis- rather than person-centric and irrelevant: the use of a prostitute
is a different category of act. The best response is to reduce demand and
maximise the autonomy of prostitutes.
Footnotes
i. This is London slang for customer and a common term used to
describe the men who use prostitutes.
References
1. Earp BD, Moen OM. Paying for sex??only for people with
disabilities? J Med Ethics 2016. Published Online First: 5 Nov 2016.
doi:10.1136/medethics-2015-103064
2. Thomsen FK. Prostitution, disability and prohibition. J Med Ethics
2015;41:451-9.
3. Myth: punters are lonely single men. Nordicmodelnow.org/myths-
about-prostitution/myth-punters-are-lonely-single-men
4. Farley M, Bindel J, Golding JM. Men Who Buy Sex: Who They Buy and
What They Know 2009. London: Eaves and San Francisco: Prostitution
Research & Education.
5. McKinnon CA. Trafficking, prostitution, and inequality. Harvard
Civil Rights Civil Liberties Law Review 2011;46(2):271-309.
6. Legal Guidance: Prostitution and exploitation of prostituted.
Crown Prosecution Service.
http://www.cps.gov.uk/legal/p_to_r/prostitution_and_exploitation_of_prostitution/#a15
7. Cho SY, Dreher A, Neumayer E. Does Legalized Prostitution Increase
Human Trafficking? World Development 2013;41(1):67-82
8. Wisdom CS, Ames MA. Criminal consequences of childhood sexual
victimization. Child Abuse & Neglect 1994;18(4):303-18
From the beginnings of our lives as doctors, we are taught about
professionalism. Professionalism encourages and enables doctors to
maintain focus on the patient's needs and treatment.
Kissing a child oversteps the boundary of professionalism. Such
contact shifts thinking from the patient to the professional and meets the
professional's emotional needs rather than the patient's.
From the beginnings of our lives as doctors, we are taught about
professionalism. Professionalism encourages and enables doctors to
maintain focus on the patient's needs and treatment.
Kissing a child oversteps the boundary of professionalism. Such
contact shifts thinking from the patient to the professional and meets the
professional's emotional needs rather than the patient's.
Physical contact with patients can be an important way of
demonstrating warmth and humanity, but I would argue that in the situation
that Mr Alamri describes, such comfort should come from the parent. This
helps the child to develop boundaries about physical contact, understand
that their bodies are their own and prevent confusion.
As an active participant in the debate that took place in the
province of Quebec concerning medical aid in dying (MAID), I would like to
take the liberty of commenting on an article by Udo Shuklenk published
recently in your journal: "Canada on course to introduce permissive
assisted dying regime". In my view, some of the factual information given
in this text needs more precision.
As an active participant in the debate that took place in the
province of Quebec concerning medical aid in dying (MAID), I would like to
take the liberty of commenting on an article by Udo Shuklenk published
recently in your journal: "Canada on course to introduce permissive
assisted dying regime". In my view, some of the factual information given
in this text needs more precision.
First of all, the chronology. In fact, the debate began in Quebec
long before and on other bases than in the rest of Canada (ROC). When
Gloria Taylor and Kay Carter's family decided to contest the Criminal Code
prohibition in British Columbia (BC) in 2009 and 2010, the public debate
was already going on in Quebec, where the drive to change was not a court
action but a political decision. On December 4, 2009, the National
Assembly created a special commission to discuss the issue of end-of-life
care in public. When the BC Supreme Court rendered its decision in favour
of the plaintiffs in June 2012, this commission had already completed its
report, which was submitted on March 22, 2012. And when the Supreme Court
of Canada (SC) released its decision in Carter in February 2015, Quebec
had already adopted its Act Respecting End-of-Life Care. Adopted on June
5, 2014, the Act has been in force since December 2015. As to the report
of the Royal Society of Canada's expert panel, of which the author was a
member, it was submitted in November 2011.
So, this "high-profile report of an international expert panel", as
the author puts it, may have had a great influence on the SC decision. And
it is evident enough that the SC decision itself had a great influence in
the debate. But it is a little difficult to follow the author when he
concludes:
"The other lesson, from Canada at least, is that what was required to
drive the change that is now coming was court action."
And it becomes almost impossible to follow him when he says, concerning
the debate in Quebec:
"At the last minute opponents of assisted dying succeeded in raising the
access threshold from being a competent adult suffering an irreversibly
low quality of life which that adult does not consider worth living by
adding a further access criterion: the person must also be towards the end
of their lives."
I really don't know where this information can have come from. In fact,
for many reasons that it would be interesting to discuss more seriously
because they are not only contextual, the debate in Quebec was, from start
to finish, limited to end-of-life care. This has nothing to do with the
opponents' arguments, who were against any opening at all, all along.
I think it is important to be extremely clear about the facts because
it might change the perspective on controversial issues such as access
criteria or conscientious objection.
With respect to access criteria or scope, the author does not seem
capable of even imagining that providing limited access to people near
their natural death can be a defensible position. He explains that two
committees addressed the issue in their reports since the election of a
new parliament in Ottawa at the end of 2015: a provincial-federal expert
panel and a parliamentary-senate special joint committee.
"These two documents combined arguably constitute the Canadian consensus
on this subject matter. Both conclude--in line with the SC decision--that
terminal illness should not be an access threshold criterion."
Arguably indeed. Why should that kind of overlapping consensus simply
override the only one in Canada reached after a vast public discussion and
enacted as law? Surely this is a moral and political question worth
discussing.
With respect to conscientious objection, the author explains:
"Doctors' lobby groups, such as the Canadian Medical Association and
religious doctors' groups clearly overplayed their hand when they decided
to take a hardline stance on the question of conscientious objection. They
lobbied governments to be given the right to refuse to provide either
assistance or transfer patients on to a professional who would provide the
service."
If that is true for doctors in the ROC, it is clearly false for doctors
practicing in Quebec who have long been obliged to help the patient find
another doctor in the event of conscientious objection. This obligation
was reaffirmed in the Act Respecting End-of-Life Care. Besides, it is
evident that conscientious objection is much less of a problem when a
large part of the population, including doctors, has actively participated
in creating the consensus, which has clearly been the case in Quebec. So,
there are alternatives to simply taking away conscientious objection
rights.
With that information in mind, it is not so easy to conclude that
Canada is on course to introduce a permissive assisted dying regime. Maybe
this will happen in the long run, but, for now, the fact is that in June
2016 the Parliament of Canada finally voted, despite the recommendations
of the advisors they appointed, for a MAID regime somewhat less limited
than the Act Respecting End-of-Life Care but much more restrictive than
the author anticipated.
Dear Sir,
I thank Dr Holland for his commentary [1] on my article [2]. I am replying to correct a possible misunderstanding he may have about the brain in people with prolonged disorders of consciousness.
He argues that there are people who are definitely permanently unaware without fluctuation because they have no brain, citing "Tony Bland, whose higher brain had effectively liquefied'". I assume that he bases this statemen...
Dear Sir,
I thank Dr Holland for his commentary [1] on my article [2]. I am replying to correct a possible misunderstanding he may have about the brain in people with prolonged disorders of consciousness.
He argues that there are people who are definitely permanently unaware without fluctuation because they have no brain, citing "Tony Bland, whose higher brain had effectively liquefied'". I assume that he bases this statement on two sentences in the original legal judgement in the Bland case. [3] They say "It is sufficient to say that it arises from the destruction, through prolonged deprivation of oxygen, of the cerebral cortex, which has resolved into a watery mass." and "There are techniques available which make it possible to ascertain the state of the cerebral cortex, and in Anthony Bland's case these indicate that, as mentioned above, it has degenerated into a mass of watery fluid."
Dr Holland has, naturally, interpret these legal statements to mean that there is no residual brain. He therefore argues both that there can be no awareness and that there can be no expectation of any recovery. If his understanding were correct, then his argument would be valid.
In reality people in a prolonged state of unconsciousness including people in the vegetative state still have some structurally intact brain albeit with considerable atrophy, [4] and this brain still shows electrophysiological activity [5] and changes in blood flow associated with stimuli. [6]
I suspect that in 1994 the experts made statements such as "the damaged brain has been replaced by cerebro-spinal fluid, which is mostly water". This simply explains that, within the fixed volume of skull, the space once occupied by the brain that has now atrophied is occupied by water; the statement does not say that there is complete absence of brain. However it has been interpreted to mean that all brain has been replaced by or transformed into 'a watery fluid'. In other words it was not made clear that there was still some structurally intact (albeit abnormally structured) brain present. This would have been known at the time. [7]
This may explain why some people believe it should be easy to determine consciousness. The difficulties in establishing consciousness on the basis of single signs has been shown in another recent publication. [8]
References.
1. Holland S. Commentary on Derick Wade's 'Back to the bedside? Making clinical decisions in patients with prolonged unconsciousness' and Zoe Fritz' 'Can best interests' derail the trolley?' Examining withdrawal of clinically assisted nutrition and hydration in patients in the permanent vegetative state.Journal of Medical Ethics. 2016;0:1-2 doi:10.1136/medethics-2016-103739
2. Wade DT. Back to the bedside? Making clinical decisions in patients with prolonged unconsciousness.
Journal of Medical Ethics. 2016;0:1-7 doi:10.1136/ medethics-2015-103140
3. Airedale NHS Trust v Bland (1993) http://www.bailii.org/uk/cases/UKHL/1993/17.html
4. Guldenmund P, Soddu A, Baquero K, Vanhaudenhuyse A, Bruno MA, Gosseries O, Laureys S, Gomez F. Structural brain injury in patients with disorders of consciousness: A voxel-based morphometry study. Brain Injury 2016;30:343-352
5. Sitt JD, King JR, El Karoui I, Rohaut B, Faugeras F, Gramfort A, Cohen L, Sigman M, Dehaene S, Naccache L
Large scale screening of neural signatures of consciousness in patients in a vegetative or minimally conscious state. Brain 2014;137:2258-2270
6. Vanhaudenhuyse A, Noirhomme Q, Tshibanda LJF, Bruno MA, Boveroux P, Schnakers C, Soddu A, Perlbarg V, Ledoux D, Brichant JF, Moonen G, Manquet P, Greicius MD, Laureys S, Boly M. Default network connectivity reflects the level of consciousness in non-communicative brain- damaged patients.Brain 2010;133:161-171
7. McLellan DR, Adams JH, Graham DI, et al. In: Papo I, Cohadon F, Massaroti M, eds. Le coma traumatique. Padova: Liviana Editrice, 1986:165-85.
8. Fischer DB, Truog RD. What is a reflex? A guide for understanding disorders of consciousness. Neurology 2015;85:543-548
The JME's peer reviewers failed to press the clinical issues before
publication of this flawed paper(1). The unoriginal idea of a 'ritual
nick' performed by health professionals in a harm limitation approach to
female genital mutilation (FGM) was proposed by the American Academy of
Pediatrics back in 2010(2), who rapidly replaced their statement(3) in the
face of worldwide condemnation(4) by the World Health Organisation...
The JME's peer reviewers failed to press the clinical issues before
publication of this flawed paper(1). The unoriginal idea of a 'ritual
nick' performed by health professionals in a harm limitation approach to
female genital mutilation (FGM) was proposed by the American Academy of
Pediatrics back in 2010(2), who rapidly replaced their statement(3) in the
face of worldwide condemnation(4) by the World Health Organisation, and
the UK Royal Colleges of Obstetricians and Gynaecologists and Paediatrics
and Child Health, amongst others.(5)
Many mistakes slipped through: (i) the authors say the prevalence of
FGM is stable, but provide figures showing it falling; (ii) they claim to
medically recategorise all procedures (amateur, accidental or surgical) -
matters beyond the scope of ethicists to judge; (iii) they state the
impacts of surgery on male and female genitals can be assumed to be
similar - they cannot; (iv) likewise, comparisons with adult surgery
(including cosmetic female genital surgery) are not relevant to children;
(v) there is no such thing as a "nick that heals completely" without
leaving scar tissue; (vi) indeed, they later admit that "de minimus"
procedures will involve "tissue being removed", the amount being difficult
to regulate; (vii) controversially, they describe asymptomatic healthy
children as "patients" thus generating an overweaning sense that doctors
owe a duty of care regarding social matters; (viii) despite arguing for
autonomy they did not suggest leaving parents with responsibility for
performing the 'nick'; (ix) far from seriously considering the
utilitarian calculus, they have no insight into the damage their proposal
has on trust in the medical profession; (x) the concept of 'harm
limitation' need not be applied(6) to justify changing the present global
consensus, especially without evidence of rising harm in countries where
FGM is illegal; (xi) they neglect entirely physicians' conflicted
pecuniary interest when surgically altering healthy children's genitals,
even if by request of loving parents for socio-cultural benefits; (xii)
revealingly, they use a self-referential test for acceptability based on
one gynaecologist's previous defence of male circumcision(7).
Surgeons should respect the basic ethical principles of 'first of
all, do no harm' and informed consent to irreversible surgery on the basis
of medical necessity, particularly when performed on children. In the USA
(but less so in Europe), there may presently remain a 'liberal' tolerance
of male circumcision whose protection appears to be the article's real
purpose. The weak arguments presented might lead to the opposite
conclusion: far from condoning renamed non-therapeutic procedures (no
doubt performed for a fee on defenceless girls), why not turn the
spotlight onto medically sanctioned traditional 'ritual' practices on male
infants?
References
(1) Arora KS, Jacobs AJ. J Med Ethics Published Online First: 22nd
February 2016 doi:10.1136/
medethics-2014-102375
(2) American Academy of Pediatrics. Ritual genital cutting of female
minors. Pediatrics
2010; 125: 1088-93.
(3) American Academy of Pediatrics. Policy statement: ritual genital
cutting of female
minors. Pediatrics 2010; 126: 191.
(4) MacReady N. AAP retracts statement on controversial practice. Lancet
2010; 376: 15.
(5) Joint RCOG/RCPCH statement on the AAP policy statement on FGM. 12 May
2010
https://www.rcog.org.uk/en/news/joint-rcogrcpch-statement-on-the-aap-
policy-statement-on-fgm/
(6) Pearce AJ, Bewley S. Medicalization of female genital mutilation. Harm
reduction or unethical? Obstet Gynaecol Reprod Med 2014;24(1):29-30
(7) Jacobs AJ. The ethics of circumcision of male infants. Isr Med Assoc
J. 2013;15:60-5.
A properly worded consent form must make risks transparent but if the
person has not even been asked to participate, discrimination is too
easily slipping in. Even giving the reason as duty of care can be mis/used
to eliminate some people - but their participation may be valuable as
well as ethical. There can be an unconscious bias to avoid difficulties
for researchers but discrimination will miss opportunities for the...
A properly worded consent form must make risks transparent but if the
person has not even been asked to participate, discrimination is too
easily slipping in. Even giving the reason as duty of care can be mis/used
to eliminate some people - but their participation may be valuable as
well as ethical. There can be an unconscious bias to avoid difficulties
for researchers but discrimination will miss opportunities for the
unexpected to be revealed by the exclusion of risk. Intolerance of risk
means whole groups may not benefit from research carried out and they
subsequently may be treated incorrectly, that is in the same way as the
findings conclude for others with low risk.
Exeter University has carried out much ground breaking work to enable
wider participation in research by the public including via self referral
and genuine rather than tokenistic efforts to involve the wider community.
It has been promoted in other parts of the country by now but how much
the public is aware of it is questionable. (Patient and Public
Involvement Exeter web site) Open selection does not always happen
though as some projects still select participants via GPs acting as
gatekeepers. For example COBRA. (On Exeter web site) Researchers will
not always get it right and results can be skewed. It would be
interesting to see a comparison of the same or other studies conducted
both by self referral and via gatekeepers.
One area which could do more to become transparent to the public is,
although more loosely described as research , the issue of conferences and
events which are held by researchers/practitioners/professionals to debate
and share information with each other exclusively , any resulting write
ups are also exclusive. Many are not open to the public either because
admission is only for stated specialist groups or because the cost of
admission is entirely prohibitive for those who are not funded. These
events are using information given directly or indirectly by the public
and paid for by citizens. On these grounds as well as it being ethically
right to make debate inclusive to all citizens - events and conferences
which have an impact on or interest to the public should be made open
access.
To The Editor
Kitzinger et al argued in favor of applying “the ‘holistic’ approach outlined in the Briggs judgment” to ascertain, in Court and ‘on the floor’, what in accordance with the Mental Capacity Act 2005 (MCA) ought to be considered a patient’s best-interest assessment.[1] In Briggs versus Briggs [2016] EWCOP 53 , “all parties were required to address the question of [Paul Briggs’s] ‘best interests rather than seeking to apply the standard of ‘substituted judgment’.”[2] Authors correctly pointed out that the MCA mandates, next to consideration of a person’s past and present wishes and feelings, values and beliefs, the inclusion of other relevant circumstances, i.e., diagnosis, prognosis and ‘sanctity of life’. Kitzinger et al postulated that this holistic approach to the best interest standard not only should be the preferred pathway over that of the ‘substituted judgment’ standard, but, if widely accepted, would make a positive contribution to “the texture and quality of best-interest decision making about these patients [with disorders of consciousness] ‘on the ground’”.[1] They further highlighted the significance of the Briggs judgment because of “the great weight [Mr Justice] Charles J gave the person’s own views, even when set against ‘sanctity of life’.”
There are theoretical and practical problems with Kitzinger et al’s position.
First, it is incorrect to describe the Briggs case as the clash of ‘sanctity of life’ and ‘self-determinat...
Show MoreRivera Lopez in his astounding article [1] proposes the duty to kill and is happy not to consider the counter arguments, but just follow his line of thought!!
...Show MoreHe is among those prepared to cross the line of taking a life or at least consider such acts in theory. His view demonstrates a very restricted outlook on life, seeing nothing beyond the concrete. It seems a bit drastic or simplistic to get rid of problems by getting rid of the people who have them. If treatment or life itself is burdensome, it can be lightened in many more caring ways. As a GP, I see what a dying person can give to others and the intangible benefits of suffering; in bringing of the family together, acknowledging the heartbreak and drawing out good in others by accompanying and self-giving. I have also seen destruction of the joy in a family by suicide and the feeling of failure among those left behind. Human dignity is found in being supported and loved, not being killed.
Another consideration is that we do not know how those who cross the line will bear up psychologically after many years of this justified killing. Doctors in Ontario, where euthanasia has been permitted by law last year, are backing out as they find that they “go through one experience and it’s just overwhelming, it’s too difficult, and those are the ones who say, ‘take my name off the list. I can’t do any more.’ ” [2] Are we prepared to risk making killing part of the medical practice and wait to see the damage?
This is a thought provoking paper but I wonder if it is founded on a false premise. It strikes me that a conscientious objection only applies if the surgeon has an obligation to undertake a cosmetic surgery procedure. If there is no obligation they are simply declining to carry out the procedure. Presumably this may be because the surgeon decides the procedure is not in the best interests of the patient. Since the surgeon is primarily an expert in physical, bodily function they should base their judgement of best interest on those grounds. Of course, if this reasoning is sound, fewer cosmetic procedures should perhaps be performed than currently are.
There are surely situations where responses of disgust and other reactions to extreme violence must be respected. How much they effect the justice system as well as the medical professionals' ability to act strictly according to laws and ethical guidelines is probably difficult to investigate. The case of Peter Sutcliffe - a violent mass murderer in UK is not quite the same scenario as the article describes but it is...
Earp and Moen demonstrate the absence of a relevant difference between the use of prostitutes by disabled people and by shy, ugly, libidinous, able-bodied people, and the impossibility of circumscribing the latter[1]. This is incorporated into a case for the full legalisation of prostitution based on: (a) the absence of a justification for its prohibition; and (b) the "needs" it meets. We posit that (b) misrepresents pro...
From the beginnings of our lives as doctors, we are taught about professionalism. Professionalism encourages and enables doctors to maintain focus on the patient's needs and treatment.
Kissing a child oversteps the boundary of professionalism. Such contact shifts thinking from the patient to the professional and meets the professional's emotional needs rather than the patient's.
Physical contact with p...
As an active participant in the debate that took place in the province of Quebec concerning medical aid in dying (MAID), I would like to take the liberty of commenting on an article by Udo Shuklenk published recently in your journal: "Canada on course to introduce permissive assisted dying regime". In my view, some of the factual information given in this text needs more precision.
First of all, the chronology...
He argues that there are people who are definitely permanently unaware without fluctuation because they have no brain, citing "Tony Bland, whose higher brain had effectively liquefied'". I assume that he bases this statemen...
The JME's peer reviewers failed to press the clinical issues before publication of this flawed paper(1). The unoriginal idea of a 'ritual nick' performed by health professionals in a harm limitation approach to female genital mutilation (FGM) was proposed by the American Academy of Pediatrics back in 2010(2), who rapidly replaced their statement(3) in the face of worldwide condemnation(4) by the World Health Organisation...
A properly worded consent form must make risks transparent but if the person has not even been asked to participate, discrimination is too easily slipping in. Even giving the reason as duty of care can be mis/used to eliminate some people - but their participation may be valuable as well as ethical. There can be an unconscious bias to avoid difficulties for researchers but discrimination will miss opportunities for the...
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