We use cookies to improve our service and to tailor our content and advertising to you.More infoYou can manage your cookie settings via your browser at any time. To learn more about how we use cookies, please see our cookies policy.
Abstract:
The area of consciousness is an ever-evolving discussion particularly in relation to approaches to assessment of awareness. The paper by Wade (2016) further advances the discussion on this complex topic. The purpose of this response aims to put forward alternative views regarding points raised by Professor Wade in his paper “Back to the bedside? Making clinical decision in patients with prolonged unconsciousness” (J. Med. Ethics 2016; 0:1-7).
(67 words)
Overview:
In this response, a number of key issues raised by Professor Wade will be explored. These include assessment modalities, the debate relating to consciousness as a spectrum, and the emphasis- or lack thereof, on the value of rigours clinical assessment in diagnosing awareness.
Assessment Modalities
In his article, Professor Wade alluded to the lack of evidence to support visual tracking as an indicator for the presence of awareness. Despite gaps in the evidence to support the relevance of tracking in making a diagnosis, it continues to be a common bedside screening tool used by both physicians and other clinicians, and has been endorsed by the working party of the Royal College of Physicians (RCP); of which Professor Wade was the co-chair, as an important clinical indicator of awareness (RCP 2013, pg.7 box 1.1). Professor Wade identified the numerous reasons why tracking may be challenging for a person with severe brain injury including oculomotor impairments, visual...
Abstract:
The area of consciousness is an ever-evolving discussion particularly in relation to approaches to assessment of awareness. The paper by Wade (2016) further advances the discussion on this complex topic. The purpose of this response aims to put forward alternative views regarding points raised by Professor Wade in his paper “Back to the bedside? Making clinical decision in patients with prolonged unconsciousness” (J. Med. Ethics 2016; 0:1-7).
(67 words)
Overview:
In this response, a number of key issues raised by Professor Wade will be explored. These include assessment modalities, the debate relating to consciousness as a spectrum, and the emphasis- or lack thereof, on the value of rigours clinical assessment in diagnosing awareness.
Assessment Modalities
In his article, Professor Wade alluded to the lack of evidence to support visual tracking as an indicator for the presence of awareness. Despite gaps in the evidence to support the relevance of tracking in making a diagnosis, it continues to be a common bedside screening tool used by both physicians and other clinicians, and has been endorsed by the working party of the Royal College of Physicians (RCP); of which Professor Wade was the co-chair, as an important clinical indicator of awareness (RCP 2013, pg.7 box 1.1). Professor Wade identified the numerous reasons why tracking may be challenging for a person with severe brain injury including oculomotor impairments, visual field deficits and neglect and this is consistent with the challenges seen clinically. This is a further reason why one might argue that assessments based on ‘uni-modal’ sensory stimulation such as the use of visual tracking in isolation is not an approach of choice. Rather, a multi-modal approach to sensory stimulation would offer a more robust method to assessment whereby patients are given an opportunity to respond to a range of stimuli therefore reducing the emphasis on a single skill.
Professor Wade argues that human judgement plays an important role in the interpretation of behaviours leading to the diagnosis of awareness. This is a valid point, and can be seen as a limitation in the behavioural approach to assessment, using tools such as the Coma Recovery Scale-Revised (CRS-R) (Giaciano et al., 2004), Sensory Modality Assessment Rehabilitation Technique (SMART) and Wessex Head Injury Matrix (WHIM) (Sheil et al., 2000). This reinforces the importance of formal training in the use of these tools as well as the value of mentorship for clinicians who are developing their skills in working with this complex patient cohort. The RCP National Clinical Guidelines advocate this approach to training for assessors (see RCP 2013, Annex 2b). Very few of the authors of the various tools stipulate the need for accreditation in their use. This is an inherent limitation as there are no guarantees that the tool will be utilised in a valid and reliable manner. There is only one available tool to the best of our knowledge that requires both training, accreditation and re-accreditation in its use. This is the Sensory Modality Assessment and Rehabilitation Technique (Gill- Thwaites 1997; Gil-Thwaites and Munday 2004; Gill-Thwaites, Elliott and Munday 2017). Whilst Seel et al., (2010) view these processes as costly, time consuming and challenging to access for geographical reasons it may be argued that such efforts ensure the clinicians who use the tool have the skills to make an accurate diagnosis of awareness.
The recommendation to use other modalities is welcomed but not always possible. The use of functional MRI (fMRI) remains largely accessible for research purposes. Moreover, the generalisation of positive findings into practical ways of interacting in a meaningful manner with one’s environment continues to present as the greatest challenge.
Consciousness as a spectrum
The author’s position as to whether consciousness should be viewed as a spectrum varies throughout the article and he appears at times, contradictory in his position.
Firstly, he proposes that there is no such thing as a clear and definitive diagnosis of any given state of awareness or unawareness. Professor Wade provides the reader with the suggestion that consciousness should be seen as a spectrum and argues that it is impossible to say with any certainty that “someone is and will remain totally unaware at all times” (pg. 5). Secondly, he suggests that the damage can be so profound such that a person can be rendered totally unaware so the idea of them remaining on a spectrum comes into question as he states “some people are severely damaged that they can be considered as being permanently totally unaware” pg.1.
This confusion is introduced from the beginning of the article starting with the title whereby he refers to prolonged unconsciousness rather than prolonged disorders of consciousness which is more typically used in clinical practice. This raises the question as to whether the word unconsciousness is less hopeful and more enduring therefore reflecting on his position that individuals can be “permanently totally unaware” negating a view that consciousness may exist but along a spectrum.
In general, his views are perplexing regarding awareness existing upon a spectrum. This may serve to confuse clinicians and family members of those in pDOC who are looking for clarity on the individuals’ awareness to assist them in their understanding of the person’s condition and to assist in the decision-making relating to the individual’s care. Regardless as to whether the states exist along a spectrum, empirical evidence and best practice guidelines advocate for a longitudinal approach to assessment, a value in detailed assessment over time, along with review of the patients awareness at intervals over their lifetime so as to identify any changes that may support greater functional or communicative engagement (RCP 2013; Yelden et al., 2017). Some assessment and rehabilitative tools such as SMART have evolved over time to acknowledge the likelihood of a ‘spectrum’ of unawareness-awareness with revisions designed to ensure that this is reflected and captures in the prolife of the patient within each modality and with staged re-assessment (Gill-Thwaites, Elliott and Munday 2017).
Summary
Professor Wade’s article provides a rich contribution to the discussion regarding assessment of consciousness and raises important points in relation to making clinical decisions for those with a PDOC. However, the importance of comprehensive assessment of awareness continues to be an integral part in directing the care and clinical management of patients and families affected by prolonged disorders of consciousness.
(973 words)
References
Giaciano J.T., Kalmer K., Whyte J. (2004) The JFK Coma Recovery Scale-Revised: measurement characteristics and diagnostic utility. Arch Phys Med Rehabil 2004; 85:2020-9.
Gill Thwaites H. (1997) The Sensory Modality Assessment and Rehabilitation Technique (SMART): a tool for assessment and treatment of patients with severe brain injury in a vegetative state. Brain Injury. 1997, Oct; 11:723-34.
Gill-Thwaites H., Elliott K.E., Munday R. (2017) SMART- Recognising the value of existing practice and introducing recent developments: leaving no stone unturned in the assessment and treatment of the PDOC patient. Neuropsychological Rehabilitation. DOI: http://dx.doi.org/10.1080/0960002011.2017.1310113.
Gill-Thwaites H and Munday R. (2004) The Sensory Modality Assessment and Rehabilitaiton Technique (SMART): A valid and reliable assessment for vegetative and minimally conscious state patients. Brain Injury. 2004; 1:1255-69.
Royal College of Physicians (2016) Prolonged Disorders of Consciousness: National Clinical Guideline. Available at: https://www.rcplondon.ac.uk/guidelines-policy/prolonged-disorders-consci... (Accessed: 11 July 2017).
Seel, R.T., Sherer, M., Whyte, J., Katz, D. Giacino, J.T., Rosenbaum, A.M., Hammond, F.M., Kalmar, K., Pape, T., Zafonte, D.O., Biester, R.C., Kaelin, D., Kean, J. and Zasler, N. (2010). Assessment Scales for disorders of Consciousness: Evidence-Based Recommendations for Clinical Practice and Research. Archives of Physical Medicine and Rehabilitation 91, pp. 1795-1813
Sheil A., Horn S.A., Wilson B.A., et al. (2000) The Wessex Head Injury Matrix (WHIM) main scale: A preliminary report on a scale to assess and monitor patient recovery after severe head injury. Clin Rehabil. 1 April 2000; 14:408-16.
Wade D. (2016) Back to the bedside? Making clinical decisions in patients with prolonged unconsciousness. J. Med. Ethics. Published online first: August 8th 2016; 0: 1-7. DOI: 10.1136/medethics-2015-103140.
Yelden K., Dupport S., James LM., Kempny A., Farmer S.F., Leff A.P., Playford E.D (2017) Late recovery of awareness in prolonged disorders of consciousness – A cross sectional cohort study. Disability and Rehabilitation. 2017 June 21, 1-6.
Dogs have been deliberately bred to be reliant on humans for company as well as to take advantage of their unique skills and intelligence, used in various ways as working dogs , such as sheep herders ,where empathy, attachment and love are blatantly obvious. They are entitled to be cared for , not to be exploited as a substitute for the human guinea pigs of the past. Using dogs which have been discarded by their owners is doubly abhorrent as regarding their lives as even more worthless. It is reminiscent of the recent past again where disabled and ill and people regarded as inferior were used for experimentation. Referring to the dogs, even in quotes, as 'volunteers' is simply disingenuous. Volunteering includes an act of willingness and agreement to procedures,
There is no question of consent of course but ethical issues are inherent in using brain scanning of other groups of often vulnerable people. They have some ethical protection but the urge to 'progress' has often fudged this. Neuropsychiatry is involved in experimentation using scans to diagnose areas of the brain which are claimed to be involved in mental health problems including the highly stigmatising and to some extent catch all label of Personality Disorder. Using scans as a tool for providing treatment designed to change a person's brain ,including psychotherapy ,raises serious ethical questions. How would people give informed consent to having scan...
Dogs have been deliberately bred to be reliant on humans for company as well as to take advantage of their unique skills and intelligence, used in various ways as working dogs , such as sheep herders ,where empathy, attachment and love are blatantly obvious. They are entitled to be cared for , not to be exploited as a substitute for the human guinea pigs of the past. Using dogs which have been discarded by their owners is doubly abhorrent as regarding their lives as even more worthless. It is reminiscent of the recent past again where disabled and ill and people regarded as inferior were used for experimentation. Referring to the dogs, even in quotes, as 'volunteers' is simply disingenuous. Volunteering includes an act of willingness and agreement to procedures,
There is no question of consent of course but ethical issues are inherent in using brain scanning of other groups of often vulnerable people. They have some ethical protection but the urge to 'progress' has often fudged this. Neuropsychiatry is involved in experimentation using scans to diagnose areas of the brain which are claimed to be involved in mental health problems including the highly stigmatising and to some extent catch all label of Personality Disorder. Using scans as a tool for providing treatment designed to change a person's brain ,including psychotherapy ,raises serious ethical questions. How would people give informed consent to having scans taken throughout treatment in order to monitor any change? How would the diagnosis be described initially? With new neuropsychiatric labels? Would 'success' be reliant on a changed brain image? How much would having these scans affect the relationship with a practitioner? How even would they be trained, chosen and allowed to practice in this way? How would the treatment be described in medical notes - which can have serious implications for employment and insurance applications.?
The authors say they have used dogs in experiments themselves but these being relatively benign can be seen as harmless. There is a fudge here even by those who have a genuine concern for the lives of dogs . Severe criticism is directed at those who cross a line into more obvious harmful experimentation but just a little bit of seemingly understood as benign exploitation/experimentation by themselves is acceptable. If only dogs could tell us what they think of us.
In their intriguing 'Plutocratic Proposal' (J Med Ethics 2017), Masters and Nutt note that the 'Matching Agencies' acting as intermediaries between benefactors and the beneficiaries would need to do systematic reviews of all known existing research and commit to publishing full research results, both for their own reputations and for legal protection . Masters and Nutt point out out that these are definitely ethical matters, and that failure to do one or both has had fatal consequences for patients and research participants.
How can it be that Emanuel, Wendler and Grady did not even mention these two vital points concerning publication in their original list of seven ethical requirements? (JAMA 2000:283:701-7011).
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.
Abstract:
The area of consciousness is an ever-evolving discussion particularly in relation to approaches to assessment of awareness. The paper by Wade (2016) further advances the discussion on this complex topic. The purpose of this response aims to put forward alternative views regarding points raised by Professor Wade in his paper “Back to the bedside? Making clinical decision in patients with prolonged unconsciousness” (J. Med. Ethics 2016; 0:1-7).
(67 words)
Overview:
In this response, a number of key issues raised by Professor Wade will be explored. These include assessment modalities, the debate relating to consciousness as a spectrum, and the emphasis- or lack thereof, on the value of rigours clinical assessment in diagnosing awareness.
Assessment Modalities
Show MoreIn his article, Professor Wade alluded to the lack of evidence to support visual tracking as an indicator for the presence of awareness. Despite gaps in the evidence to support the relevance of tracking in making a diagnosis, it continues to be a common bedside screening tool used by both physicians and other clinicians, and has been endorsed by the working party of the Royal College of Physicians (RCP); of which Professor Wade was the co-chair, as an important clinical indicator of awareness (RCP 2013, pg.7 box 1.1). Professor Wade identified the numerous reasons why tracking may be challenging for a person with severe brain injury including oculomotor impairments, visual...
Dogs have been deliberately bred to be reliant on humans for company as well as to take advantage of their unique skills and intelligence, used in various ways as working dogs , such as sheep herders ,where empathy, attachment and love are blatantly obvious. They are entitled to be cared for , not to be exploited as a substitute for the human guinea pigs of the past. Using dogs which have been discarded by their owners is doubly abhorrent as regarding their lives as even more worthless. It is reminiscent of the recent past again where disabled and ill and people regarded as inferior were used for experimentation. Referring to the dogs, even in quotes, as 'volunteers' is simply disingenuous. Volunteering includes an act of willingness and agreement to procedures,
Show MoreThere is no question of consent of course but ethical issues are inherent in using brain scanning of other groups of often vulnerable people. They have some ethical protection but the urge to 'progress' has often fudged this. Neuropsychiatry is involved in experimentation using scans to diagnose areas of the brain which are claimed to be involved in mental health problems including the highly stigmatising and to some extent catch all label of Personality Disorder. Using scans as a tool for providing treatment designed to change a person's brain ,including psychotherapy ,raises serious ethical questions. How would people give informed consent to having scan...
In their intriguing 'Plutocratic Proposal' (J Med Ethics 2017), Masters and Nutt note that the 'Matching Agencies' acting as intermediaries between benefactors and the beneficiaries would need to do systematic reviews of all known existing research and commit to publishing full research results, both for their own reputations and for legal protection . Masters and Nutt point out out that these are definitely ethical matters, and that failure to do one or both has had fatal consequences for patients and research participants.
How can it be that Emanuel, Wendler and Grady did not even mention these two vital points concerning publication in their original list of seven ethical requirements? (JAMA 2000:283:701-7011).
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...
Pages