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LECTURE: Rebalancing Empowerment and Protection: Evolving Legal Frameworks for Impaired Capacity

28 Nov, 16 | by Iain Brassington

Thursday 8 December 2016, 18:00 – 19:00

UCL Gustave Tuck Lecture Theatre, Wilkins Building, Gower Street, London WC1E 6BT

Speaker: Professor Mary Donnelly (University College Cork)
Chair: TBC
Accreditation: This event is accredited with 1 CPD hour with the SRA and BSB

Admission: Free, Registration required (here)

 

The past decade has seen a notable evolution in the normative context for law’s response to people with impaired capacity. Driven by a range of factors, including greater recognition of human rights (perhaps most notably through the Convention on the Rights of Persons with Disabilities) and better empirical understandings, a rhetoric of inclusion and empowerment has replaced traditional approaches centred on control and protection.  Law reform projects in various jurisdictions (Australia, Canada, Ireland, Northern Ireland) have attempted to develop legislative frameworks to give effect to these emerging norms. Yet there is also another narrative. Concerns are expressed (perhaps most commonly by frontline professionals: healthcare professionals, lawyers, social workers and sometimes by family members of people with impaired capacity) that something important may be lost where there is a devaluation of protective norms. There is also a dissonance between the abstract ideals of human rights on the one hand and on the other, the complex corporeal, economic, family, phenomenological and social context within which people with impaired capacity, and those who care for/about them, live.

Tensions between empowerment and protection norms and between abstract, rights-based and contextual, evidence-based policy drivers are inevitable by-products of law’s evolution and they play a necessary role in the development of the law in this area. Rebalancing is a process and not a once-off event. And, of course, as revealed by even a minimal consideration of earlier legal responses to impaired capacity, there is a good deal of room for evolutionary wrong-turns and for unexpected and undesirable consequences. Placing current debates about how law should respond to impaired capacity within an evolutionary context, this paper identifies and evaluates the range of ways in which contemporary tensions may be resolved.

About the speaker:

Mary Donnelly is a Professor in the Law School, University College Cork. Her books include Consent: Bridging the Gap Between Doctor and Patient (Cork: Cork University Press, 2002); Healthcare Decision-Making and the Law: Autonomy, Capacity and the Limits of Liberalism (Cambridge: Cambridge University Press, 2010) and The Law of Credit and Security (Dublin: Round Hall Thomson Reuters, 2011; 2nd ed, 2015) and she is co-author of End-of-Life Care: Ethics and Law (Cork University Press, 2011) and Consumer Law: Rights and Regulation (Dublin: Round Hall Thomson Reuters, 2014) and co-editor of Ethical and Legal Debates in Irish Healthcare: Confronting Complexities (Manchester University Press, 2016).

She has collaborated on projects funded by the European Commission, the Irish Research Council for the Humanities and Social Sciences, the National Children’s Office and the Irish Hospice Foundation and has acted as consultant for public agencies and legal firms.  She is/has been a member of the Expert Group to review the Mental Health Act 2001 and of the HSE National Consent Advisory Group and the HSE National Assisted Decision Making Steering Group.

Personal Responsibility Within Health Policy: Unethical and Ineffective

23 Sep, 16 | by miriamwood

Guest Post by Phoebe Friesen

Re: Personal responsibility within health policy: unethical and ineffective

If someone who has smoked two packs a day for thirty years and someone who has never smoked but is unfortunate enough to inherit a genetic condition are both in need of heart surgery, who should be given priority?

Should an alcoholic be placed on the liver transplant list, even if they continued to drink against their doctor’s advice?

Does someone who never works out and has poor eating habits have the same right to health care as someone who eats healthy and exercises every day?

Policy makers who are faced with the difficult task of distributing limited resources in health care need to determine which criteria are relevant, and questions related to ‘personal responsibility’ come up time and again. Within the field of medical ethics, many have argued that personal responsibility should be taken into account within health care policy. Advocates suggest that treatments will be more effective or provide longer-lasting solutions if illnesses are not self-caused, and argue that individuals who knowingly take health risks violate their obligation to take care of themselves and should therefore be treated differently. Others argue that there is no place for responsibility in health care policy, pointing out that there is no evidence for different treatment outcomes in individuals who did or did not contribute to their condition, and emphasizing the difficulty, if not impossibility, of determining how responsible someone is for a particular health problem.

more…

Letter from Iraq: Ethical Dilemmas in an Iraqi Burn Centre

17 Sep, 16 | by BMJ

Guest Post by Mustafa AL-Shamsi

Health requires a multidisciplinary approach.  In the absence of proper support, facilities and literate people, there is little that a physician can do to cure his patient regardless his proficiency.  The following is not a story; it comes from what I experienced when I was an intern at the burn unit.  I faced a lot of ethical rather than medical challenges.  Some I could cope with; others were not so easy.

I was an intern in Basra city, according to the internship curriculum.  My internship in the burn unit changed my outlook and made me aware of how fragile the health care system is in Iraq.  Being a doctor in the Iraqi health care system is tough; there are many challenges to stand against, but you have little to do because of a limited resources, poor training and supervision.  The most disturbing thing is you have little to do for your patient!  (Others have noted similar problems.)

I learned a lot of good-sounding terms like mercy and empathy during medical school, but is any of them is applicable in the burn unit?  There was too much sorrow and pain to deal with.  Human lives were placed on the shelf without care from authorities.  On my first few days I was upset by every burn patient; however, this made me feel sick and frustrated, and I began to project my emotion on my family, friends and patients.  I realised that I would not able to manage patients properly if I continued dealing with this situation from this position, so I developed a new strategy: apathy.

In the past, I always considered apathy to be a malaise; but in the burn unit it became my salvation. more…

Event: Courting Controversy?

3 Jul, 16 | by Iain Brassington

This might be of interest to some readers:

Courting Controversy?  Recent Developments in Health Care Law

21 July 2016

Chancellors Hotel, Chancellors Way, Moseley Road, Fallowfield, Manchester M14 6NN

This afternoon seminar examines some controversial recent developments in health care law and introduces two new books on law and medicine:

  • Margaret Brazier and Emma Cave Medicine, Patients and the Law (6th Edn) (Manchester UP, 2016)
  • Catherine Stanton and Hannah Quirk (eds), Criminalising Contagion: Legal and Ethical Challenges of Disease Transmission and the Criminal Law (Cambridge UP, 2016)

Participants will have the opportunity to discuss developments in the law and meet the authors and researchers from the Centre for Social Ethics and Policy (CSEP) informally.

Programme

13:30 – 14:00  Registration

14:00 – 14:30  Overview of recent developments (Margot Brazier and Emma Cave)

14:30 – 15:00  Protecting Vulnerable Patients (Emma Cave)

15:00 – 15:30  Criminalising Disease Transmission: Demands, Difficulties and Dangers (Hannah Quirk)

15:30  Tea

16:00 – 16:30  Patient Autonomy: Clinical Compulsion?  An Analysis of Montgomery and Doogan – Margot Brazier

16:30 – 17:00  Law Commission Recommendations on Deprivation of Liberty Safeguards – Neil Allen

17:00  Open Discussion

17:30  Reception

This event is free and offered by the CSEP and the School of Law, University of Manchester.  Registration, however, is required.  Please reserve your place here.  For more information, email maureen.barlow[at]manchester.ac.uk

There’s Argument, and there’s Disputation.

7 Jun, 16 | by Iain Brassington

Very well, then: let’s allow that the quality of argument in bioethics – and clinical ethics in particular – is not of high quality.  What should be done about it?

That’s a hard question, though it’s predictable and wholly justifiable that it should be asked.  And, to be honest, I don’t know offhand.  I might have a few germs of ideas, but nothing that I’d be prepared to mention in public.  That doesn’t mean that I can’t look at other ideas, and test them out.  One such idea is mooted in this paper by Merrick et al: in essence, they propose a sort of debating competition.  They begin by explaining – with some plausibility – some of the factors that make it a bit hard to get full-blooded engagement with ethics in the medical curriculum:

As educators, we have observed additional challenges medical students face in their ethics education, which echo others’ experiences. First, because of the prodigious amount of information medical students are presented with during their first two years of training, they typically adopt a strategy of selectively reading assignments, attending large lectures, and participating in small group discussions.  In this context, ethics appears to be deprioritized, because, from the students’ perspective, it is both more demanding and less rewarding than other subjects.  Unlike other subjects, ethics requires students to reflect on their personal moral sensibilities in addition to understanding theory and becoming familiar with key topics and cases.  Yet, also unlike other courses, poor marks in ethics rarely cause academic failure, given the way performance in medical school curricula is typically evaluated.  Thus, ethics is both more demanding—because of the burdens of self-reflection—and less rewarding—because excellence in ethics does not contribute significantly to grades or test scores.

Second, medical students face challenges in how they individually conceptualize the value of ethics in the medical context.  Although many indicate that morality is important to them, they also suggest that it is a subject matter that relates to their personal, as opposed to professional, actions.  Instead, students often conflate the domains of institutional policy and health law (especially risk management and malpractice litigation) with medical ethics.  Although these domains are obviously also of essential concern for future physicians, they remain distinguishable from ethical issues likely to emerge in practice.  Consequently, rigorous and effective ethics education within the medical school context faces the challenge of distinguishing ethics from other aspects of professionalism.

Too often, ethics gets run alongside communication skills training (well, it’s all about getting informed consent, isn’t it?  Eh?  Eh?); and I’ve lost count of the number of times I’ve been asked to prepare multiple choice questions for ethics assessment.  (Standard answer: nope.  It’s got to be an essay of some sort, or it’s not worth doing.)

So what to do?  The paper, as I’ve already said, suggests a quasi-competitive debating competition, in which teams of students are given a problem, and a limited time to make a case in response to that problem.  An opposing team then has a limited amount of time to place a counterargument.  Then they swap roles, so the counterarguing team gets to make the argument, and the previous arguers now become counter-arguers.  Judges can ask questions, and assign a score.  “The basic aim of the MEB curriculum,” the authors say,

is to help students learn how to produce and present an argument for an ethical position in response to a realistic clinical situation.

Hmmmmm.

Every now and again I get asked to help judge debating competitions – sometimes for academic institutions, sometimes for non-University bodies, sometimes for others (*cough* Instituteofideas *cough*).  I used to be happy to help out.  But I’m not so sure now. more…

Writers Whose Expertise is Deplorably Low

4 Jun, 16 | by Iain Brassington

Something popped up on my twitter feed the other day: this document from Oxford’s philosophy department.  (I’m not sure quite what it is.  Brochure?  In-house magazine?  Dunno.  It doesn’t really matter, though.)  In it, there’s a striking passage from Jeff McMahan’s piece on practical ethics:

Even though what is variously referred to as ‘practical ethics’ or ‘applied ethics’ is now universally recognized as a legitimate area of philosophy, it is still regarded by some philosophers as a ghetto within the broader 
area of moral philosophy.  This view is in one way warranted, as there is much work in such sub-domains of practical ethics as bioethics and business ethics that is done by writers whose expertise is in medicine, health policy, business, or some area other than moral philosophy, and whose standards of rigour in moral argument
are deplorably low.  These writers also tend
 to have only a superficial understanding of normative ethics.  Yet reasoning in practical ethics cannot be competently done without sustained engagement with theoretical issues
in normative ethics.  Indeed, Derek Parfit believes that normative and practical ethics are so closely interconnected that it is potentially misleading even to distinguish between them.  In his view, the only significant distinction is between ethics and metaethics, and even that distinction is not sharp.  [emphasis mine]

It’s a common complaint among medical ethicists who come from a philosophical background that non-philosophers are (a) not as good at philosophy, (b) doing medical ethics wrong, (c) taking over.  All right: there’s an element of hyperbole in my description of that complaint, but the general picture is probably recognisable.  And I don’t doubt that there’ll be philosophers grumbling along those lines at the IAB in Edinburgh in a couple of weeks.  There’s a good chance that I’ll be among them.

There’s a lot going on in McMahan’s piece, and his basic claim is, I suppose, open to a claim that, being a philosopher, he would say that, wouldn’t he?  But even if that claim is warranted, it doesn’t follow that it’s false.  And it probably isn’t false.  There is some very low-quality argument throughout bioethics (and, from what I remember from my time teaching it, business ethics) – more particularly, in the medical ethics branch of bioethics, and more particularly still, in the clinical ethics sub-branch.  Obviously, I’m not going to pick out any examples here, but many of us could point to papers that have been simply not very good, because the standard of philosophy was low, without too much difficulty.  Often, these are papers we’ve peer-reviewed, and that haven’t seen the light of day.  But sometimes they do get published, and sometimes they get given at conferences.  I’ve known people who make a point of trying to find the worst papers on offer at a given conference, just for the devilry.

It doesn’t take too much work to come up with the common problems: a tendency to leap to normative conclusions based on the findings of surveys, or empirical or sociological work; value-laden language allowing conclusions to be smuggled into the premises of arguments; appeals to vague and – at best – contentious terms like dignity or professionalism; appeals to nostrums about informed consent; cultural difference used as an ill-fitting mask for special pleading; moral theories being chosen according to whether they generate the desired conclusion; and so on.  Within our field, my guess is that appeals to professional or legal guidelines as the solutions to moral problems is a common fallacy.  Not so long ago, Julian noted that

[t]he moralists appear to be winning.  They slavishly appeal to codes, such as the Declaration of Helsinki.  Such documents are useful and represent the distillation of the views of reasonable people.  Still, they do not represent the final word and in many cases are philosophically naïve.

Bluntly: yes, the WMA or the BMA or the law or whatever might say that you ought to do x; and that gives a reason to to x inasmuch as that one has a reason to obey the law and so on.  But it’s unlikely that it’s a sufficient reason; it remains open to us always to ask what those institutions should say.  Suppose they changed their minds and insisted tomorrow that we should do the opposite of x: would we just shrug and get on with the business of undoing what we did today?

And yet…  The complaint about poor argument is not straightforward, for a couple of reasons. more…

Patient Views about Consent, Confidentiality & Information-Sharing in Genetic Medicine.

29 Apr, 16 | by BMJ

Guest post by Sandi Dheensa, Angela Fenwick and Anneke Lucassen

Imagine you’re a clinician in genetic medicine.  For a while, you’ve been seeing Joe Bloggs, a patient with a mutation in a gene that’s caused a hereditary form of colon cancer.  As is your standard practice, you help Joe identify who in his family is also at risk and spend some time talking about how he’ll tell them.  The Bloggs’ are a large bunch: Joe has children, siblings, nieces, nephews, aunts, uncles, and cousins, all of whom might have the mutation.  Anyone who tests positive would be eligible for regular bowel screening, which – while not pleasant – makes it much more likely that any cancer will be caught at a  treatable stage.  Unfortunately, despite all this, you’ve reason to believe that Joe hasn’t told his relatives anything and now you’re unsure what to do.

What are your options?  You might say Joe’s confidentiality and autonomy are paramount: it’s up to him what he does, and, as his doctor, you’ve done your part by telling him the cancer is heritable.  Or you might argue that Joe’s family needs to know – but how  and when?  The GMC says you can share a patient’s personal information without consent if the benefit of doing so outweighs the risk: does the situation meet this criterion?  What if you share the information and Joe sues you for breaching his confidentiality?  But what if you don’t say anything and a relative develops a cancer that could’ve been prevented?  Won’t their trust in the health service be shaken if they knew you’d chosen not to share?  Indeed, the UK and Netherlands have recently seen cases where relatives  questioned the health service’s non-disclosure of relevant information.

Taking a “joint account” view of confidentiality from the outset would’ve avoided these situations.  The joint account involves viewing genetic and personal information as distinct: the possible inheritance of cancer is common to the whole Bloggs family, but that Joe has stage III bowel cancer is personal.  If genetic information is confidential to the family, not just the tested patient, you’d have told Joe upfront, before even drawing his blood, that you’d look into sensitive and appropriate ways to let his relatives know the information if they might benefit from it.  Later down the line, when it materialised he hadn’t told his family, it would’ve been easier to negotiate what to do.

In our recent JME paper, we explored the views of people affected by hereditary cancer and other conditions regarding the distinction between genetic and personal information, the levels of confidentiality afforded respectively, and healthcare professionals’ roles and responsibilities toward their patients’ relatives.

In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. more…

Recent Attempts to Restrict the Abortion Law in Poland: A Commentary

25 Apr, 16 | by BMJ

Guest post by Dr Atina Krajewska, University of Sheffield

A couple of weeks ago news hit the headlines about attempts to introduce a total ban on abortion in Poland.  The legislative proposal that caused outrange among women’s rights organisations has been drafted by a citizen’s initiative, “Stop Abortion”, and is the fourth attempt to restrict abortion access to have been given a parliamentary hearing in Poland in the last 5 years.  The proposal must be supported by 100 000 signatures before it can be voted in Parliament.  However, as this threshold has been easily met in the past, it is worth reflecting on its causes and possible legal and social consequences for Poland and Europe.

Current law

Poland is well known for its conservative approach towards reproductive rights.  The current Act on Family Planning, from 1993, extends the protection of the right to life to the prenatal phase of human life.  It allows doctors to perform lawful abortions in only three sets of circumstances: when a) the pregnancy constitutes a danger to the life or health of the mother; b) prenatal tests suggest a high risk of a serious and irreversible abnormality or a severe life-threatening illness of the foetus; c) there is a justified suspicion that the pregnancy is a result of a criminal act (rape or incest).  A lawful termination can take only place within the first 12 weeks of pregnancy.  The Act has been often criticised as one of the most restrictive in Europe.

Nevertheless, despite popular belief, it is not the current law that seems to lie at the root of the problem.  The reason for the limited access to abortion services for women is not the restrictive legislation, but its highly limiting and narrow interpretation and incorrect implementation.  Poland has recently lost three major cases before the European Court of Human Rights (Tysiac, R.R., and P & S) due to the lack of adequate procedures guaranteeing the full exercise of statutory rights and medical practice substantially limiting access to lawful abortions.  For the first time in the abortion context, the Court found that the actions of Polish authorities and medical professionals have met the threshold of inhumane and degrading treatment, set in Article 3 of the European Convention on Human Rights. Poland is the best example of how social, historic and political circumstances led to the bifurcation of different forms of legality, i.e. to discrepancies between formal and informal rules, between law and other – ethical and social – norms.

The new proposal

The new bill “on the general protection of human life and preparation for family life” defines “prenatal life” as starting from the moment of conception, which is described as “the fusion of the female and male gametes”.  The same definition applies to the term “conceived child”, used in the Polish criminal code.

Crucially, the Bill proposes to delete all three conditions under which lawful abortion is currently permitted.  This, of course, constitutes a dramatic departure from the current legal framework, and converts the current legislation into an administrative tool setting general directions for (limited) sexual education and social care necessary for families affected by the new regulation.  At the same time, and more importantly, the new proposal sets out changes to the Polish criminal code, according to which ‘the causation of the death of a conceived child’ would carry a sentence between 3 months and 5 years of imprisonment.  The same sanction would apply if someone were to assist with, or incite, abortion.

There is only one exception. more…

How We Feel about Human Cloning

7 Apr, 16 | by BMJ

Guest post by Joshua May

Suppose you desperately want a healthy child to build a family of your own.  As is increasingly common, however, you can’t do it naturally – whether from infertility, a genetic disease you don’t want to pass on, or a non-traditional relationship.  If you seek a genetic connection with the child, there are some limitations to the main alternatives: adoption, surrogacy, and in vitro fertilization.  You may yearn for more options.

How would you feel about cloning?  Take the nucleus of a cell from yourself or a loved one, then put it into an egg that will eventually develop into a baby that shares nearly all the genes of the donor cell.  The resulting baby will simply be a kind of ‘delayed twin’ of the donor.

Most people believe this is immoral.  There’s a bit more support for therapeutic uses that merely create new tissue, for example.  But, at least in the US and UK, people overwhelmingly condemn cloning for the purposes of creating new human lives.  In fact, a recent poll suggests there is little disagreement in America over this issue, where human cloning is among the most widely condemned topics (alongside polygamy and infidelity).

That’s what people think, but how do they feel?  Controversial bioethical issues often generate intense feelings.  Some bioethicists treat cloning in particular as a line in the sand that we mustn’t cross, for fear of sliding down a slippery slope to a dystopia.

Consider Leon Kass, who played a major role in public policy as chair of George W. Bush’s President’s Council on Bioethics.  Kass argues that there is wisdom in repugnance toward human cloning, allowing us to ‘intuit and feel, immediately and without argument, the violation of things that we rightfully hold dear’.  As opposed to mere unease or sadness, Kass and some others have argued that disgust is such a powerful and distinctive emotion that we should take it seriously as a moral guide when deliberating about ethical issues.

An empirical claim lurks.  Such bioethicists assume that people in general share their reaction of repugnance. Besides, if we can uncover the emotional reactions people tend to feel toward disputed moral issues, then we can better understand why they hold the beliefs they do.  Does the prospect of cloning humans make us sick?  Scared?  Sad?  Angry?  Excited?  At ease?

In my paper, I provide some initial evidence that people (at least in the States) feel primarily anxious and curious about human reproductive cloning.  These were the most frequently self-reported negative and positive emotions, not disgust, fear, sadness, anger, excitement, amusement, comfort, or joy. more…

Why Brits? Why India?

3 Apr, 16 | by Iain Brassington

Julie Bindel had a piece in The Guardian the other day about India’s surrogate mothers.  It makes for pretty grim reading.  Even if the surrogates are paid, and are paid more than they might otherwise have earned, there’s still a range of problems that the piece makes clear.

For one thing, the background of the surrogates is an important factor.  Bindel writes that

[s]urrogates are paid about £4,500 to rent their wombs at this particular clinic, a huge amount in a country where, in 2012, average monthly earnings stood at $215.

It’s tempting, at first glance, to look at the opportunity to be a surrogate as a good thing in this context: these women are earning, by comparative standards, good money.  But, of course, you have to keep in mind that the standard is comparative.  If your choice is between doing something you wouldn’t otherwise do and penury, doing the thing you wouldn’t otherwise do looks like the better option.  But “better option” doesn’t imply “good option”.  So there’s more to be said there; more questions to be asked.  Choosing x over y because y is more awful doesn’t mean that x isn’t.  It might be a good thing; but it might not be.  There might be economic – structural – coercion.  Choosing to become a surrogate might be a symptom of there being no better alternative.

A related question is this: are the women really making a free choice in offering their reproductive labour even assuming that the terms are economically just?  Possibly not:

I have heard several stories of women being forced or coerced into surrogacy by husbands or even pimps, and ask Mehta if she is aware of this happening.  “Without the husbands’ [of the surrogates] consent we don’t do surrogacy.”

Note (a) the non-denial, and (b) the tacit acceptance that it’s the husband’s decision anyway.  That’s not good.

(In a wholly different context, I’ve recently been reading David Luban’s Lawyers and Justice, and – in a discussion about lawyers cross-examining complainants in rape cases, he makes this point:

([H]ere we have two people who are confronted by powerful institutions from which protection is needed.  The defendant is confronted by the state [that is: in any criminal trial, the defendant does need protection from the power of the state – IB], but the victim is confronted by the millennia-long cultural tradition of patriarchy, which makes the cliché that the victim is on trial true.  From the point of view of classical liberalism, according to which the significant enemy is the state, this cannot matter. But from the point of view of the progressive correction of classical liberalism, any powerful social institution is a threat, including diffuse yet tangible institutions such as patriarchy. (p 151)

(The sentiment would seem to apply here.  A view of human agency that sees liberty as being mainly or only about avoiding state interference is likely to miss all kinds of much more subtle, insidious pressures that are liberty-limiting.  Economic factors are such pressures.  The idea of the wife as property is another.)

I do wonder if readers of this blog might help out with answering one more question, though. more…

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