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Indeed FGA type 1 and 2 would not rob me and so many like me who want to follow our religious rights and adhere to harmless procedures as well which are surely less invasive than male circumcision. Its would not make me feel harrassed by western oppression of allowing the afflent consenting woman undertake the same procedure while condemning me of mine. Since FGA type 1 n 2 are harmless they are on the rise as cosmetic surgeries, so why should my choice of doing it for religious purpose become harmful to be banned. Yes severe forms shouldn't be allowed but surely type 1 or 2 as alternatives can reduce severe forms from happening. Medicalization and strict protocols can be framed to ensure safety from FGA type 1 n 2 procedures as well.
A non-vaccinator is not the culprit for the existence of immunosuppressed persons. Hence, we must use overall and not conditionals probabilities here and pass to the population level. Let’s assume that the prevalence of immunosuppressed persons is 4/10.000 and that measles attack rate is 2/10.000 for the population. Then the probability to observe an immunosuppressed person that gets infected by measles is very low, say 4/10.000 * 2/10.000 = 8 * 10^(-8). The probability to get an encephalitis from measles vaccine is 1 * 10^(-6) and hence more probable.
Risk vs Risk is always problematic and should be avoided.
Recently we conducted a study that identified an “ethics ecosystem” that, as a form of research governance, ensures that common ethical principles are operationalised by a number of actors within this ecosystem. This ethics ecosystem includes researchers, research ethics committee members, research institutions, publishing houses and Editors, and external Associations [1, 2].
In their paper ‘In defence of governance: ethics review and social research’, Sheehan et al [3] attempt to find a strong ethical answer for the need for such levels of ethical governance at the ethical review level for the social sciences. In doing this, the authors respond to a number of hypothetical claims against the need for such a review governance system. They then create their case that society has a stake in social research because of its link to enquiry, and in turn, human flourishing. They explain that because individual members of society will reasonably disagree about this ‘stake’, i.e., what specific research enquiry should proceed through ethical review to further human flourishing, this needs to be settled via a ‘fair process’ governance (i.e., a committee style) model.
While this paper is certainly a comprehensive and interesting analysis highlighting many of the discussions in this area, the authors fail to sufficiently link their final argument to ‘enquiry’.
We believe we can provide a better defense for an ethical review framework. This can be achieved by...
Recently we conducted a study that identified an “ethics ecosystem” that, as a form of research governance, ensures that common ethical principles are operationalised by a number of actors within this ecosystem. This ethics ecosystem includes researchers, research ethics committee members, research institutions, publishing houses and Editors, and external Associations [1, 2].
In their paper ‘In defence of governance: ethics review and social research’, Sheehan et al [3] attempt to find a strong ethical answer for the need for such levels of ethical governance at the ethical review level for the social sciences. In doing this, the authors respond to a number of hypothetical claims against the need for such a review governance system. They then create their case that society has a stake in social research because of its link to enquiry, and in turn, human flourishing. They explain that because individual members of society will reasonably disagree about this ‘stake’, i.e., what specific research enquiry should proceed through ethical review to further human flourishing, this needs to be settled via a ‘fair process’ governance (i.e., a committee style) model.
While this paper is certainly a comprehensive and interesting analysis highlighting many of the discussions in this area, the authors fail to sufficiently link their final argument to ‘enquiry’.
We believe we can provide a better defense for an ethical review framework. This can be achieved by asking first and foremost “How can we conduct ethical social science research?” rather than, as Sheehan et al ask, How can we defend ethics review? By re-framing this initial question, the justification for a level of research ethics governance becomes clearer.
At present, our “ethics ecosystem” ensures that conducting ethical research and behaving ethically is reinforced through a governance network of interconnected actors from the academic system. The Ethics Ecosystem comprises individuals (researchers), organisations (research institutions) and external bodies (publishing houses, funding bodies, professional associations) all working together and playing a role in the promotion, evaluation and enforcement of a shared understanding of ethically responsible research behavior [1]. This ensures that research is conducted responsibly in a way that is valued by the academy, minimises risk to participants, and guards against academic misconduct.
When working well, it is hard to see the importance that each actor and each level of the ecosystem has in the maintenance of shared understandings of ethical behaviour. Only when this ecosystem is compromised can we see the need for a higher form of research ethics governance.
Such is the case for social media research.
Social media sites are increasingly being seen as rich sources of health data for scholars- as avenues for research project recruitment; as intervention platforms for specific health conditions; to explore social support and health; and as a source of publicly available data. Data-mining techniques used to access public health data have, for example, been drawn upon to improve infectious disease surveillance; to understand disease patterns; and to explore health behaviours[4]. A number of ethical concerns have emerged in relation to the use of such data, and the ongoing and complex nature of social media research has been suggested to be potentially challenging for researchers and ethics committees. Concerns relate to whether to classify social media research as human subjects’ research or text-based analysis; what constitutes public and private spaces; and vulnerability, potential harm, intrusiveness, and confidentiality [5-12].
We explored how the ethics ecosystem was functioning with relation to this new mode of ethically complex research. We spoke to actors at many levels of the ecosystem including researchers, research ethics committee members, universities, publishing houses, and journal Editors. We identified a lack of community consistency, which fosters a culture in which decisions about the ethical use of SM data is primarily made by a reliance on individual researchers implementing a form of “personal ethics”; rather than by a shared norm around the use of SM data by actors within an overarching ethics ecosystem. Such a ‘personal ethics’ if left unchecked, can be dangerous in terms of unethical research falling between the cracks in terms of research governance.
At the researcher level of the ethics ecosystem, researchers placed emphasis on the subjective, individual nature of ethics when justifying their research practices:
Interviewer: Are there any guidelines in particular that you follow in your own research?
Researcher : It’s my guidelines. Everybody has their own definition of ethics….
They spoke about working around the non-obligatory ‘vague’ guidelines to justify their research;
They are [guidelines] slightly contradictory in places and you can argue around them...so there is some issues around integrity that don’t necessarily hold true and you can argue either way for some of the issues around that
With such a personal approach to ethics, researchers’ ability to justify their ethical choices to both other researchers, as well as, where necessary, to ethical review boards became a key priority;
There is a sense of you got to develop the sense of what's right here, be the expert in that and then put that across and you know, make your case
At the researcher ethics committee level of the ethics ecosystem, because little social media research was submitted for ethical review (researchers used ‘personal ethics’ to often justify this decision), committee members had little experience or shared understanding of how to review this research. Within this framework of ethical decision-making, focus was placed on researchers’ justifications of their research approach
sometimes make different decisions even for projects that look pretty similar. It’s how they build up their case doing that particular project
Similar ethical decision-making, focused on a researcher’s justification of their personal ethics, was also evident at the Editor level of the ecosystem.
This personal ethics is not necessarily problematic per se but if we remove the stability of shared understanding within the ethics ecosystem, researchers are left to justify which research is ethical or not by themselves and not within themselves. This leads to the disintegration of the multi-member ethics ecosystem, its governance role and ethic pluralism applied at all levels. The risk of this, we argue, provides a stronger justification for research ethics governance than the ones considered by Sheehan et al.
Ethics Approval: Ethics approval for this research was granted by Lancaster University
References
1. Samuel G, Derrick G. Social media research, ‘personal ethics’, and the Ethics Ecosystem. New Social Media, New Social Science Blog 2017.
2. Social media approaches to health research: an empirical analysis of decision-making within the UK ethical landscape. Social Media and Health: Meeting the Ethical Challenges; 2017 4th October; Wellcome Trust.
3. Sheehan M, Dunn M, Sahan K In defence of governance: ethics review and social research Journal of Medical Ethics Published Online First: 10 October 2017. doi: 10.1136/medethics-2017-104443
4. Vayena E, Mastroianni A, Kahn J. Ethical Issues in Health Research With Novel Online Sources. American Journal of Public Health 2012;102(12):2225-30.
5. McKee HA, Porter JE. The ethics of internet research: a rhetorical, case-based process. New York: Peter Lang Publishing, 2009.
6. Zimmer M. ‘‘But the data is already public’’: on the ethics of research in Facebook. Ethics Inf Technol 2010;12:313-25.
7. Snee H. Making Ethical Decisions in an Online context: Reflections on using blogs to explore narratives of experience. Methodological innovations online 2013;8(2):52-67.
8. Lomborg S. Personal internet archives and ethics. Research Ethics 2013;9(1):20-31.
9. Swirsky E, Hoop J, Labott S. Using Social Media in Research: New Ethics for a New
Meme? American Journal of Bioethics 2014;14(10):60-61.
10. Convery I, Cox D. A review of research ethics in internet-based research. Practitioner Research in Higher Education 2012;6(1):50-57.
11. Markham A, Buchanan E. Ethical Decision-Making and Internet Research: Recommendations from the AoIR Ethics Working Committee, 2012.
12. Henderson M, Johnson NF, Auld G. Silences of ethical practice: dilemmas for researchers using social media. Educational Research and Evaluation: An International Journal on Theory and Practice 2013;19(6):546-60.
Professor Wade’s article is an excellent overview of how to apply best interests to decision making in prolonged Disorders of Consciousness (PDoC) and should be mandatory reading for all health professionals caring for individuals with brain injuries1. However it fails, as does the Royal College of Physicians PDoC guidance, to adequately emphasise the vastly different balances when comparing withdrawal or withholding of clinically assisted artificial nutrition and hydration versus far more invasive and burdensome treatments.
A significant proportion of patients in a PDOC are only alive because they were subjected to the very invasive life sustaining treatment that modern medicine can inflict. The existence of the clinical entity of PDoC could arguably be seen as a failure of prognostication and best interests decisions during the acute phase of a catastrophic brain injury; continuing invasive treatment that is arguably either ‘futile’, not in the patients best interests or be so invasive and prolonged to be disproportionate to the likely outcome2. However prognostication can be a difficult and uncertain at this stage.
In our institution we admit up to 70 patients per annum who have sustained an out of hospital cardiac arrest and the majority of these survive long enough to need to assessment of neurological prognosis. At 72 hours, if the patient remain neurologically obtunded, we use multi-modal assessment to assess the likely outcome according to internation...
Professor Wade’s article is an excellent overview of how to apply best interests to decision making in prolonged Disorders of Consciousness (PDoC) and should be mandatory reading for all health professionals caring for individuals with brain injuries1. However it fails, as does the Royal College of Physicians PDoC guidance, to adequately emphasise the vastly different balances when comparing withdrawal or withholding of clinically assisted artificial nutrition and hydration versus far more invasive and burdensome treatments.
A significant proportion of patients in a PDOC are only alive because they were subjected to the very invasive life sustaining treatment that modern medicine can inflict. The existence of the clinical entity of PDoC could arguably be seen as a failure of prognostication and best interests decisions during the acute phase of a catastrophic brain injury; continuing invasive treatment that is arguably either ‘futile’, not in the patients best interests or be so invasive and prolonged to be disproportionate to the likely outcome2. However prognostication can be a difficult and uncertain at this stage.
In our institution we admit up to 70 patients per annum who have sustained an out of hospital cardiac arrest and the majority of these survive long enough to need to assessment of neurological prognosis. At 72 hours, if the patient remain neurologically obtunded, we use multi-modal assessment to assess the likely outcome according to international guidelines3.
If a poor outcome (death or severe neurological disability including PDoC) is deemed likely or very likely best interests meetings are held. We then, after appropriate consultation, consider withdrawal of life sustaining treatment which, at this stage, is mainly in the form of mechanical ventilation.
Often families take some time to become reconciled to the sad reality that modern medicine can not return all patients to a life they would wish for. However when there is a prolonged disagreement as to whether Intensive Care is indeed in the patients best interests the patient has entered the realms of a PDoC.
Recent CoP proceedings4 in such a case led to application by the neuro-rehabilitation and legal fraternity, wrongly in my opinion, of the Royal College of Physicians PDoC guidelines to a patient on Intensive Care. Is it ever in a patients best interests, unless previously expressly stated, to subject them to many months of Intensive Care when the assessed best outcome by experts is a PDoC? Is this proportionate? Is this appropriate use of finite healthcare resources?
As seems to be ever common, arguments then ensue about honing in on the exact diagnosis between MCS and VS using assessments that are not necessarily applicable to a patient in Intensive Care. To an Intensive Care clinician these discussions are irrelevant especially when the patients physical status is so fragile it is unlikely to support any potential recovery. Sadly, rigid application of the guidelines can lead to an inability to look holistically at the whole individual and focus solely on the issue of the brain and PDoC ignoring how physical health impacts on the overall prognosis.
It would seem disproportionate to need the same certainty of diagnosis and prognosis, i.e. many months of PDoC diagnostic assessment, to withdraw highly invasive intensive care compared with withdrawal of CANH in a ‘stable’ patient. Sadly, such subtleties are not explicit in the current PDoC guidelines sometimes resulting in these very authoritative guidelines over-ruling common sense and holistic care.
1. Wade DT. Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management. J Med Ethics. 2017 Sep 14;medethics – 2017–104244.
2. Kitzinger J, Kitzinger C. The ‘window of opportunity’ for death after severe brain injury: family experiences. Sociol Health Illn. 2013 Sep 1;35(7):1095–112.
3. Sandroni C, Cariou A, Cavallaro F, Cronberg T, Friberg H, Hoedemaekers C, et al. Prognostication in comatose survivors of cardiac arrest: An advisory statement from the European Resuscitation Council and the European Society of. Intensive Care Med. 2014 Dec 1;40(12):1816–31.
4. Abertawe Bro Morgannwg University LHB v RY and CP [2017] EWCOP 2.
There is a simpler way to conceive of this issue. Simply, modern bioethics emphasizes the right of choice by self-conscious, autonomous individuals. They have the right to request procedures, including physician-assisted termination, or to refuse procedures that even if beneficial seem to them unpalatable. Physicians have an obligation as physicians to the patients care. But they also have an equal right as citizens to refuse to take actions that seem to them unethical or immoral. To deny them this right but insist upon it as a right for all others is to create a unique category of persons with responsibility for care but without the right to exercise ethical judgments about the care they provide. This "professionalism" denies them the equal opportunity to exercise the right of all others as ethical persons in a situation where they have a legal and ethical professional responsibility to provide the best and most ethical care possible. Simply, creating a class of persons with responsibility but without ethical standing is unconscionable.
We would like to congratulate Dr Derick T Wade on the article advocating a formalised approach to best interest meetings for people suffering from prolonged disorders of consciousness (1). It is a bold and pragmatic approach, borne out of his extensive experience, which will undoubtedly be of use to the practicing clinicians in the concerned jurisdiction. We are writing to supplement it with a few points which we consider worthy of additional noting.
Firstly, we are glad of the title using the term “prolonged disorder of consciousness” given that persistent vegetative state (PVS) and minimally conscious state (MCS) are problematic from phenomenological and practical points of view. As Dr Wade notes, the two are difficult to differentiate and in practice permanence takes significant and possibly indeterminate time to establish. Unfortunately, the Law maintains a distinction between the two founded in the leading case of Anthony Bland. Abolishing the distinction would in practice prevent splitting hairs over what is likely to be an equally tragic outcome for the individual concerned, and the surviving relatives. From a legal and philosophical point of view, it can be argued, as it was in the Bland case, that patients in PVS lack any “best interests”. To quote Lord Mustill – “The distressing truth which must not be shirked, is that the proposed conduct is not in the best interests of Anthony Bland, for he has no best interests of any kind” – ackno...
We would like to congratulate Dr Derick T Wade on the article advocating a formalised approach to best interest meetings for people suffering from prolonged disorders of consciousness (1). It is a bold and pragmatic approach, borne out of his extensive experience, which will undoubtedly be of use to the practicing clinicians in the concerned jurisdiction. We are writing to supplement it with a few points which we consider worthy of additional noting.
Firstly, we are glad of the title using the term “prolonged disorder of consciousness” given that persistent vegetative state (PVS) and minimally conscious state (MCS) are problematic from phenomenological and practical points of view. As Dr Wade notes, the two are difficult to differentiate and in practice permanence takes significant and possibly indeterminate time to establish. Unfortunately, the Law maintains a distinction between the two founded in the leading case of Anthony Bland. Abolishing the distinction would in practice prevent splitting hairs over what is likely to be an equally tragic outcome for the individual concerned, and the surviving relatives. From a legal and philosophical point of view, it can be argued, as it was in the Bland case, that patients in PVS lack any “best interests”. To quote Lord Mustill – “The distressing truth which must not be shirked, is that the proposed conduct is not in the best interests of Anthony Bland, for he has no best interests of any kind” – acknowledging the profound nature of the damage he suffered leading to absence of any cognitive process (2). In contrast, those in MCS, require a balancing approach to establish their best interests which may lead to a different decision concerning withdrawal of CANH (3). A patient’s ascertainable wishes are determinative in the decision-making as recognised by Charles J in Briggs v The Walton Centre NHS Trust & Another, who, notably, framed his decision in terms of consent / refusal and stated– “I have concluded that as I am sure that if Mr Briggs had been sitting in my chair and heard all the evidence and argument he would, in exercise of his right of self-determination, not have consented to further CANH treatment that his best interests are best promoted by the court not giving that consent on his behalf.” (4)
Secondly, Dr Wade also hints at the dual obligation faced by the clinicians looking after patients with disorders of consciousness, where an obligation towards the family and society at large is also apparent. These obligations are however suppressed by the perceived professional obligation to protect life as laid out by the General Medical Council. The conflict of duties is a fundamental critique of deontological approach to ethics and thus a perennial problem of bioethics and healthcare ethics where utilitarian considerations emerge. However the law not only makes it clear that prolongation of life may not be the best option for the patient but also that healthcare has to be rationed at many levels.
Finally, while second opinion is invaluable in life or death decisions, and strongly supported by the recent case law (5), consideration may also be given to review and adjudication by ethics committees, something we feel is underused in the UK in spite of growing complexity of ethical and legal problems associated with healthcare.
References:
1. Wade D T. Using best interests meetings for people in a prolonged disorder of consciousness to improve clinical and ethical management. J Med Ethics. Published online 14 September 2017; doi10.1136/medethics-2017-104244.
2. Airedale NHS Trust v Bland [1993] UKHL 17 (04 February 1993)
3. Re M; W v M [2011] EWHC 2443 (COP)
4. Briggs v Briggs and Walton Centre NHS FT and another [2016] EWCOP 53
5. Tracey, R (On the Application Of) v Cambridge University Hospitals NHS Foundation Trust & Ors [2014] EWCA Civ 822 (17 June 2014)
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.
Indeed FGA type 1 and 2 would not rob me and so many like me who want to follow our religious rights and adhere to harmless procedures as well which are surely less invasive than male circumcision. Its would not make me feel harrassed by western oppression of allowing the afflent consenting woman undertake the same procedure while condemning me of mine. Since FGA type 1 n 2 are harmless they are on the rise as cosmetic surgeries, so why should my choice of doing it for religious purpose become harmful to be banned. Yes severe forms shouldn't be allowed but surely type 1 or 2 as alternatives can reduce severe forms from happening. Medicalization and strict protocols can be framed to ensure safety from FGA type 1 n 2 procedures as well.
A non-vaccinator is not the culprit for the existence of immunosuppressed persons. Hence, we must use overall and not conditionals probabilities here and pass to the population level. Let’s assume that the prevalence of immunosuppressed persons is 4/10.000 and that measles attack rate is 2/10.000 for the population. Then the probability to observe an immunosuppressed person that gets infected by measles is very low, say 4/10.000 * 2/10.000 = 8 * 10^(-8). The probability to get an encephalitis from measles vaccine is 1 * 10^(-6) and hence more probable.
Risk vs Risk is always problematic and should be avoided.
Recently we conducted a study that identified an “ethics ecosystem” that, as a form of research governance, ensures that common ethical principles are operationalised by a number of actors within this ecosystem. This ethics ecosystem includes researchers, research ethics committee members, research institutions, publishing houses and Editors, and external Associations [1, 2].
In their paper ‘In defence of governance: ethics review and social research’, Sheehan et al [3] attempt to find a strong ethical answer for the need for such levels of ethical governance at the ethical review level for the social sciences. In doing this, the authors respond to a number of hypothetical claims against the need for such a review governance system. They then create their case that society has a stake in social research because of its link to enquiry, and in turn, human flourishing. They explain that because individual members of society will reasonably disagree about this ‘stake’, i.e., what specific research enquiry should proceed through ethical review to further human flourishing, this needs to be settled via a ‘fair process’ governance (i.e., a committee style) model.
While this paper is certainly a comprehensive and interesting analysis highlighting many of the discussions in this area, the authors fail to sufficiently link their final argument to ‘enquiry’.
We believe we can provide a better defense for an ethical review framework. This can be achieved by...
Show MoreProfessor Wade’s article is an excellent overview of how to apply best interests to decision making in prolonged Disorders of Consciousness (PDoC) and should be mandatory reading for all health professionals caring for individuals with brain injuries1. However it fails, as does the Royal College of Physicians PDoC guidance, to adequately emphasise the vastly different balances when comparing withdrawal or withholding of clinically assisted artificial nutrition and hydration versus far more invasive and burdensome treatments.
A significant proportion of patients in a PDOC are only alive because they were subjected to the very invasive life sustaining treatment that modern medicine can inflict. The existence of the clinical entity of PDoC could arguably be seen as a failure of prognostication and best interests decisions during the acute phase of a catastrophic brain injury; continuing invasive treatment that is arguably either ‘futile’, not in the patients best interests or be so invasive and prolonged to be disproportionate to the likely outcome2. However prognostication can be a difficult and uncertain at this stage.
In our institution we admit up to 70 patients per annum who have sustained an out of hospital cardiac arrest and the majority of these survive long enough to need to assessment of neurological prognosis. At 72 hours, if the patient remain neurologically obtunded, we use multi-modal assessment to assess the likely outcome according to internation...
Show MoreThere is a simpler way to conceive of this issue. Simply, modern bioethics emphasizes the right of choice by self-conscious, autonomous individuals. They have the right to request procedures, including physician-assisted termination, or to refuse procedures that even if beneficial seem to them unpalatable. Physicians have an obligation as physicians to the patients care. But they also have an equal right as citizens to refuse to take actions that seem to them unethical or immoral. To deny them this right but insist upon it as a right for all others is to create a unique category of persons with responsibility for care but without the right to exercise ethical judgments about the care they provide. This "professionalism" denies them the equal opportunity to exercise the right of all others as ethical persons in a situation where they have a legal and ethical professional responsibility to provide the best and most ethical care possible. Simply, creating a class of persons with responsibility but without ethical standing is unconscionable.
Dear Editor,
We would like to congratulate Dr Derick T Wade on the article advocating a formalised approach to best interest meetings for people suffering from prolonged disorders of consciousness (1). It is a bold and pragmatic approach, borne out of his extensive experience, which will undoubtedly be of use to the practicing clinicians in the concerned jurisdiction. We are writing to supplement it with a few points which we consider worthy of additional noting.
Firstly, we are glad of the title using the term “prolonged disorder of consciousness” given that persistent vegetative state (PVS) and minimally conscious state (MCS) are problematic from phenomenological and practical points of view. As Dr Wade notes, the two are difficult to differentiate and in practice permanence takes significant and possibly indeterminate time to establish. Unfortunately, the Law maintains a distinction between the two founded in the leading case of Anthony Bland. Abolishing the distinction would in practice prevent splitting hairs over what is likely to be an equally tragic outcome for the individual concerned, and the surviving relatives. From a legal and philosophical point of view, it can be argued, as it was in the Bland case, that patients in PVS lack any “best interests”. To quote Lord Mustill – “The distressing truth which must not be shirked, is that the proposed conduct is not in the best interests of Anthony Bland, for he has no best interests of any kind” – ackno...
Show MoreAbstract:
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...
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