published between 2016 and 2019
I was intrigued to read this article about US practice relating to consent and minors.
Intrigued; and very pleased that I practice in the UK, where this was agreed, very sensibly, years ago.
The UK law permits a minor to consent to treatment, as long as they are capable of understanding the issues involved. And for vaccination, the issues (when you leave out the non-science-based scary stuff) are usually straightforward.
This means that vaccinating adolescents against HPV is straightforward - a few simple questions to establish that they understand what the vaccines for, and have an acceptable understanding of the almost-negligible risks involved, and you can vaccinate them, without requiring parental consent and with the full support of healthcare systems and the courts.
The ludicrous situation in the USA where some parents can prevent their children from accessing vaccines at the right time (before sexual debut), when the children themselves have a clearer understanding of the issues than their parents and want to be vaccinated is now, thankfully, a largely historical issue here.
The article by Brennan , which has just been drawn to my attention, only exists in hypothetically perfect world in which medical evidence is always clear cut and bureaucracies beyond fallibility, bias, corruption or perhaps even scrutiny - it hinges like a lot of ethical investigations round the word "if". You could agree "y" if "x" (though I am not sure whether in this case it would be a libertarian argument as opposed to just an argument) but we do not have flawless bureaucracies making perfect decisions based on immutable scientific laws. Of course, a crucial argument relating to political liberty is just that bureaucracies are inevitably imperfect.
While we could explore and criticize the basis of many such decisions (and despite huge institutional pressures many criticisms of vaccine products lie within mainstream scientific debate, for instance issues regarding influenza vaccination, HPV, aluminum adjuvants, mercury preservatives etc.) we are simply not talking about a branch of science which admits of such certainties. Nor are we dealing with just a few products. The US mandated schedule has perhaps dozens of products already, with hundreds in the pipeline which depend for their commercial viability on being licensed and mandated in their turn. Brennan does not engage with the problem that is not about one or two instances (for instance MMR vaccine is often cited) but an indefinitely large number products which could become c...
While we could explore and criticize the basis of many such decisions (and despite huge institutional pressures many criticisms of vaccine products lie within mainstream scientific debate, for instance issues regarding influenza vaccination, HPV, aluminum adjuvants, mercury preservatives etc.) we are simply not talking about a branch of science which admits of such certainties. Nor are we dealing with just a few products. The US mandated schedule has perhaps dozens of products already, with hundreds in the pipeline which depend for their commercial viability on being licensed and mandated in their turn. Brennan does not engage with the problem that is not about one or two instances (for instance MMR vaccine is often cited) but an indefinitely large number products which could become compulsorily mandated for citizens by already existing bodies.
Brennan weights the case by proposing on the one hand that we have reliable science and on the other hand a lady who has appeared in Playboy centerfolds, i.e. Jenny McCarthy, but of course the arguments against the perfection and safety of the program has often been taken up by scientific and medical professionals, and often against their professional interest. It is not a happy example for yet another reason. If we were to have reliable information about vaccine products (as opposed to Papal style declarations of infallibilty) scientists and doctors would need to listen respectfully to citizens about their experiences whether or not they had appeared in Playboy. For this purpose celebrities are just prominent members of the public. In the case of Jenny McCarthy she and her employers have been subject to professional intimidation lying well beyond the realms of dispassionate science . The issue of false-flag "grass-roots" vaccine organizations has also recently been highlighted by Doshi . Bureaucracies can maintain their record by socially repressive means against the public and Jenny McCarthy would be an example: this is what might happen to you if you stand up.
It is not helpful - indeed highly misleading - to talk in abstract propositions: the truth here is messy and likely unpleasant.
 Brennan J, 'A libertarian case for mandatory vaccination, BMJ Ethics', 11 July 2016 http://dx.doi.org/10.1136/medethics-2016-103486
 Schneider S, 'Big Pharma’s faking a “grass-roots” campaign to keep Jenny McCarthy off “The View”", Notes from the Underground http://markcrispinmiller.com/2013/08/big-pharmas-faking-a-grass-roots-ca...
 Doshi P, 'The unofficial vaccine educators: are CDC funded non-profits sufficiently independent?' BMJ 7 November 2017 http://www.bmj.com/content/359/bmj.j5104
Jason Brennan presents a justification for mandatory vaccination policy from a libertarian perspective. I reevaluate Brennan’s argument, focusing on the applicability and potential limit of the clean hands principle he proposed. I argue that the clean hands principle cannot tell us how to weight the degrees of risk of different collectively harmful activities; therefore, we could not distinguish the relative significance of coercive interventions that aim at stopping different kinds of collectively harmful activities. Using secondhand smoke prevention as an analogous policy example, I illustrate that many behaviors that suffice the five conditions could be qualified as collectively harmful activities. These activities are hence subject to coercive policies that are justified by the clean hands principle, including those obviously infringe individual rights and civil liberties and contradict with libertarianism. For libertarians, this implication of the clean hands principle might not be too comfortable to accept.
Using David Gauthier’s strategy, Jason Brennan demonstrates that even starting with a theory “with strongly individualist and antigovernment premises” such as libertarianism, mandatory vaccination is justifiable (p.37).1 Drawing on one of his own works, Brennan argues that the clean hands principle requires a person not to participate in collectively harmful activities, and that libertarians should accept governments’ coercive...
Using David Gauthier’s strategy, Jason Brennan demonstrates that even starting with a theory “with strongly individualist and antigovernment premises” such as libertarianism, mandatory vaccination is justifiable (p.37).1 Drawing on one of his own works, Brennan argues that the clean hands principle requires a person not to participate in collectively harmful activities, and that libertarians should accept governments’ coercive interventions to enforce this requirement.2 Since the behavior of anti-vaxxers is a collective harmful activity, these anti-vaxxers “are imposing unacceptable and unjust risks on others.” Therefore, the governments could rightly coerce them to be vaccinated. Even libertarians should be comfortable with this policy recommendation. However, as I will show, there are several issues to be considered, especially for libertarians, if readers were to accept this conclusion.
For the purpose of discussion, let us first recall the five conditions that constitute a collectively harmful activity. When a group of individuals 1. actively expose “themselves to potentially dangerous diseases,” and 2. actively do “things that have a high likelihood of spreading these diseases to others,” and 3. actively choose “not to take steps to reduce the risks they are imposing,” and 4. “are not epistemically justified in 3” for “they lack grounds for refusing to take precautions,” and 5. impose on others the risk that “cannot be justified as part of an equitable social system of risk-taking as it provides no advantage to others,” then this group of individuals perform a collectively harmful activity (p.41).1 Brennan suggests that under the circumstances that these five conditions present, governments’ coercive intervention to forbid individuals from participating in such activity is justifiable.
The major issue is that the clean hands principle cannot tell us how to weight the degrees of risk of different collectively harmful activities; therefore, we could not distinguish the relative significance of coercive interventions that aim at stopping different collectively harmful activities. In the field of public health, many behaviors could be qualified as collectively harmful activities and hence be subject to the clean hands principle. In other words, many governments’ coercive interventions aim at these unhealthy behaviors could be easily justified even they might contradict with libertarianism.
Take a common intervention policy – secondhand smoke prevention – for example. Is emission of tobacco smoke in places that expose others to secondhand smoke a collectively harmful activity done by smokers? Are these smokers imposing unacceptable and unjust risks on others? These smokers indeed expose themselves to potentially dangerous diseases (suppose we recognize the scientific evidence that exposure to tobacco smoke causes),3 such as lung cancer. Although they cannot literally spread lung cancer, they indeed have a high likelihood to spread secondhand smoke that causes lung cancer to others. When they emit the smoke in places where others present, they indeed actively choose not to take steps to reduce the risks they are imposing. So far, the smokers’ behavior has sufficed conditions 1 to 3. As for condition 4, considering the dominant propaganda on the health risks of tobacco, we could reasonably presume that most smokers already known the knowledge and hence lack grounds for refusing to take precautions (such as step to another place that on one present there). Lastly, those exposed to secondhand smoke are certainly not a part of an equitable social system of risk-taking, because there’s obviously no advantage could be obtained from inhaling secondhand smoke. Consequently, we establish an argument that emission of tobacco smoke to others is a collectively harmful activity done by smokers.
Suppose the analogy is right, then we could confidently accept a policy proposal that governments should forbids every smoking behavior that might cause secondhand smoke. Actually, this is what people in public health have already done. In the 2003-adopted World Health Organization Framework Convention on Tobacco Control (FCTC), Article 8 “Protection from exposure to tobacco smoke” requires parties to protect people “from exposure to tobacco smoke in indoor workplaces, public transport, indoor public places and, as appropriate, other public places” through legislative efforts.4 In practice, many countries have implemented similar laws and regulations to forbid secondhand smoke in public places. Furthermore, in our inference of the five conditions above, they have nothing to do with whether the conditions present in a public or a private place. We could actually argue that secondhand smoke should be forbidden not only in public but also in private places. Therefore, we should accept a coercive intervention that regulate smoking behavior in even the most private and intimate places, even if we were libertarians. This conclusion obviously infringes many individual rights and civil liberties that libertarians believe should be protected against governments’ coercion.
Some might argue that smokers’ spreading secondhand smoke is different from anti-vaxxers’ spreading infectious microbes, because infectious microbes are much more dangerous and fatal than tobacco smoke. However, I maintain that it is not so much a disanalogy; rather, it is just a matter of different degrees of risk. Different microbes cause different diseases and health outcomes to individuals. Some have longer latent, some have higher transmission rate, some cause higher mortality, some cause irreversible disability, and some are fatal only if the patient is exposed twice. The risks each microbe could cause are different. Suppose we consider secondhand smoke as a kind of microbe that have a long latent and cause fatal (and often painful and suffering in terms of life quality and finance) outcome – lung cancer, then it is no different from the others. What really different here is the degree of risk, depending on the measurement. The point is that the clean hands principle does not take the degree of risk into consideration. As long as the harms are caused by a collectively harmful activity, it is subject to governments’ coercive interventions.
Note that the degree of risk I refer here is different from the assumption (C) of a valid intervention, which assumes that the target of a intervention will cause serious illnesses (therefore the intervention can protect against them) (p.37).1 This implies that as long as a collectively harmful activity would cause serious enough illnesses (let us tentatively neglect the definition of ‘enough’ and just suppose that lung cancer is a serious one), it could be the target of the intervention (secondhand smoke prevention policy), regardless of its degree of risk. Therefore, accompanied with the (A) effectiveness and (B) harmlessness assumptions, the intervention is valid and could be defended (p.37).1
I take secondhand smoke prevention policy as an example to illustrate the applicability of the clean hands principle. From those related to individual-level life style (unhealthy behaviors) to community-level social determinants of health,5 in the field of public health, many more analogous examples could be easily proposed, and many coercive intervention policies could be defended accordingly. On this ground, it seems that the most radical public health advocates could march together with libertarians. I do not suggest that I am one of the public health advocates, but I figure that they would gratefully appreciate this conclusion, and I suspect that libertarians would be comfortable with it. Therefore, out of friendly intentions, I urge my libertarian peers to reconsider Brennan’s proposal.
1. Brennan J. A libertarian case for mandatory vaccination. Journal of Medical Ethics 2018;44(1):37-43. doi: 10.1136/medethics-2016-103486
2. Brennan J. The ethics of voting. Princeton: Princeton University Press 2011.
3. Öberg M, Jaakkola MS, Woodward A, et al. Worldwide burden of disease from exposure to second-hand smoke: a retrospective analysis of data from 192 countries. The Lancet 2011;377(9760):139-46. doi: https://doi.org/10.1016/S0140-6736(10)61388-8
4. World Health Organization Framework Convention on Tobacco Control. Geneva: World Health Assembly, 2003.
5. Marmot M, Atkinson T, Bell J, et al. Fair Society Healthy Lives The Marmot Review Executive Summary. London: The Marmot Review, 2010.
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  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...
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 . 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. 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
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...
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  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...
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.
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  UKHL 17 (04 February 1993)
3. Re M; W v M  EWHC 2443 (COP)
4. Briggs v Briggs and Walton Centre NHS FT and another  EWCOP 53
5. Tracey, R (On the Application Of) v Cambridge University Hospitals NHS Foundation Trust & Ors  EWCA Civ 822 (17 June 2014)
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).
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.
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...
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).
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.
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