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Politicians, Delusional Managers and the Future of the NHS: Have NHS Leaders Failed to “Speak Truth unto Power”?

11 Jan, 17 | by Iain Brassington

Guest Post by David Lock QC

[NB: This is a slightly longer version of a post that appeared on the BMJ blog earlier today.]

Politicians, delusional managers and the future of the NHS:  have NHS leaders failed to “speak truth unto power”?

This blog is not a rant – well not too much of a rant.  It is an expression of serious frustration about the way the NHS is run and about the willingness of senior NHS managers to become complicit in dishonesty.  It also needs to acknowledge the brave role of some in the NHS – particularly in NHS Providers – who keep telling it as it is and being decried for doing so.

Everyone at the frontline knows the NHS is running on empty.  The more perceptive know that more money for the NHS alone will not improve services for patients.  But – and this is perhaps the unpopular “but” – NHS senior managers ought to accept their share of the responsibility for the present crisis.  The problem is the failure of NHS managers to “speak truth unto power” to those above them and to our political masters for too many years.  Long before Sir Ivan Rogers used the phrase, a 2015 FCO blog explained the centrality of this concept as part of public service as follows:

The UK Civil Service doesn’t have an official motto – but if it did, it would almost certainly be: “speak truth unto power”. It’s a maxim that’s in the blood of good civil servants, even if they know that it won’t make their lives any easier. The best politicians learn to cherish civil service advice which points out the flaws in their arguments. The worst surround themselves with sycophants who create a micro-climate which wraps a warm embrace around their worst tendencies.

But, this principle appears respected in the breach in the NHS.   The £22bn efficiency challenge came out of nowhere and yet became an article of faith.  Of course, it has not been delivered and was never going to be delivered, but the planning process has continued in a parallel universe where no one has the courage to say “Actually this is nonsense – a public service has never delivered these efficiency savings and the NHS will not do so”.  So the fiction is maintained that this is what the NHS has to do by 2020.  But, of course, we are now in 2017 and so there is precious little time to deliver the undeliverable.

Secondly, the fiction is that the present government is putting an extra £10bn into the NHS, as well as promising an extra £350m per week as a Brexit dividend.  The £10bn claim was never accurate.   No set of “true and fair” NHS accounts could ever include the £10bn claim.  The £350m a week claim was made for votes, not for spending.  And yet who in the NHS has held the government to account for either promise? more…

A Matter of Life and Death

10 Jan, 17 | by bearp

Guest Post by Professor Lynn Turner-Stokes

Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness

In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.

Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.

Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.

more…

CfP: IME Summer Conference, Liverpool

5 Jan, 17 | by Iain Brassington

Building on the success of three previous conferences held in Edinburgh, Newcastle and London, the 4th Institute of Medical Ethics Summer Conference will take place on the 15th and 16th June 2017 in Liverpool.

Two changes have been made to the conference format for 2017.  First, the Research Committee will accept proposals for individual papers as well as for panels.  The latter will be allocated 75mins and the time can be used for traditional presentations of 15-20 mins or for more collaborative and discursive interactions.  Second, there is a specific call for contributions from the medical humanities.  The IME’s Research Committee hopes to include a stream of medical humanities papers across both days of the conference.

Confirmed Keynote Speakers are Prof Rosamund Scott (KCL) and Prof. Stephen Wilkinson (Lancaster).

Further information can be found here, and the IME  can be found on Twitta via @IMEweb.

The location and date of this year’s conference have been coordinated with the annual conference of the UK Clinical Ethics Network.  Themed “Family Matters”, this will be their 17th Annual Conference.  It takes place on the 14th June, and there will be a short IME/ UKCEN crossover session on the morning of the 15th. For further details about UKCEN’s conference see http://www.ukcen.net/.

Professionalism, or Prying?

3 Jan, 17 | by Iain Brassington

“Professionalism” is a funny thing.  About this time last year, I was struggling to get a new course written for the coming semester; it was on professional ethics for lawyers.  A colleague made a comment along the lines that I must be spending a lot of time looking at the professional codes; I replied that I’d be spending almost none doing that; she looked baffled and wandered off, presumably convinced that I was joking.

I wasn’t joking.  I did look a little at the professional codes, but only as a jumping-off point.  My schtick was more like, “Here’s what the SRA says about client confidentiality; now let’s spend the remaining 98% of this lecture looking at why it might say that, and whether it ought to say something different”.

Yet, as I wrote the lectures, professionalism – not professional codes, but professionalism – did keep cropping up.  After all, if you’re going to talk about lawyers’ ethics, or doctors’ ethics, or engineers’ ethics, the implication has to be that there’s something quite specific that applies to each of those professions, otherwise it just collapses into… well, ethics; and it might be that there is a clear way to define who belongs to the profession, and a clear hierarchy, and that it is proper (or, at least, it may be proper) that there is some sort of pressure exerted by that hierarchy that shapes behaviour in a way that neither the law nor standard social norms do.  There are some things that are regulated by professional ethics that aren’t regulated by bog-standard ethics.  To return to the lawyers’ example, there might be certain things that are acceptable or even required from a lawyer that wouldn’t be in other cases, and other things that are unacceptable that are trivial outside the profession; and the same might apply to medics.  (In passing, I think that that might be one of the fault lines in academic medical ethics: those of us that come from a philosophical background understand “ethics” to mean one thing, and those of us who come from a medical or, in at least some cases, a social science background understand it to mean another.  We normally rub along fine, but sometimes we are talking at cross-purposes.)

A range of problems arises from that, though.  For example, though codes of ethics might attempt to codify what it is that’s demanded by professionals, they’re often rather vague, or presuppose a heck of a lot that’s actually rather important.  That can lead to situations in which it’s impossible to tell what’s required on the ground.  “Maintaining the reputation of the profession” is a concern of some of the professional codes I’ve seen, though quite what that means is anyone’s guess, since it might collapse to “doing whatever keeps the public on side, no matter how senseless”; and while that might maintain esteem in one sense, it does so only by undermining the concept of professional integrity.

A second problem comes from the need to know what things are properly within the “professional” remit, and what professional bodies have any business talking about.  The difficulty here is that “professionalism” implies living a kind of life; being a professional involves being a certain kind of person.  One doesn’t stop being a professional when the end-of-shift klaxon goes.  And yet there’re certain things that do have nothing to do with professional regulation: whether or not to be teetotal is not a professional matter, and a professional body that tried to involve itself in such decisions would be stepping over the line.  Still, where the line should be drawn may not be obvious.

All of this brings me to this blog post over on the BMJ blog, in which Niro Kumar considers doctors and dating apps. more…

Trump’s Anti-Regulator

12 Dec, 16 | by Iain Brassington

In the latest edition of “Dude, really?” news to come from the post-election US…

Wait: let me start that again.  In the latest edition-that-I’ve-had-time-to-digest-because-I-really-can’t-keep-up-with-this-stuff edition of “Dude, really?” news to come from the post-election US, it would appear that a strong candidate to head the Food and Drug Administration under Donald Trump is one Jim O’Neill.  According to the Scientific American,

O’Neill would be an unusual choice. He is not a physician, and lacks the strong science background that nearly all former commissioners have had in recent years.

A graduate of Yale University, with a master’s degree from the University of Chicago, O’Neill went to work at the Department of Health and Human Services in 2002, after a stint as speechwriter at the Department of Education. He worked his way up to principal associate deputy secretary, where he advised the HHS Secretary on all areas of policy, according to his LinkedIn page.

Now, so far, that is probably not too big a deal.  Since the head of the FDA is not actually involved in doing any bench science, the fact that he lacks a strong science or medical background needn’t matter too much.  What does matter is that the person in charge of the agency should be able to to consult the right kind of person and so on: in other words, to be broadly scientifically literate, and to have access to specialists.  That sets a much lower bar.  Medical or pharmacological expertise, after all, is much more likely to mean expertise in one comparatively narrow area within each subject than it is to mean a thoroughgoing expertise in the whole field; therefore even someone with a strong science background would have to rely on advice from others when it comes to things outside the postholder’s particular area of study.  Indeed, by the time you’ve worked up the administrative experience to lead an agency, it’s probably a while since you cleaned your last test-tube – so even your notional expertise may not be quite as cutting edge as you’d like to think.  And, working the other way, being a whizz-bang scientist is perfectly compatible with being terrible at what is essentially a senior civil-service gig.

So… not a medic, not a scientist?  Not necessarily a problem.  You just have to know which people to ask what questions – and that’s what you’d be doing anyway.*

But, of course, there’s a “but”.  Actually, there’s several “but”s.

Like, for example, it’s one thing not to have a strong scientific background; but it’s quite another to reveal that more…

Who is afraid of the big broad bioethics? A dialogue between authors of “Highlights in bioethics through 40 years”

6 Dec, 16 | by miriamwood

Guest Post: Pingyue Jin and Mark Hakkarinen

Article: Highlights in bioethics through 40 years: a quantitative analysis of top-cited journal articles

Dear readers of the JME’s blog, we hope this short dialogue below may prompt your interest to join us in this journey that explores the depth and width of the field of bioethics.

Everything starts from somewhere…

Pingyue: I think it all started with a blog post. Around May 2015, I found this webpage “Top 50 Bioethics Journals and Top 240 Most Cited Bioethics Articles Published Since 2009”, and I thought to myself: “What a fantastic idea! I wish I could have started with these papers when I first came to this field.” After that, this idea of identifying seminal bioethics papers lingered in my mind for weeks. Finally I picked up all my courage and wrote to the author of that post, Mark, who was then a total stranger and now a good friend. In the end of the email, I cautiously mentioned if I could join him in a project (funded only by our enthusiasm) to examine the part of bioethics represented by these highly-cited articles. Luckily, he said yes.

Mark: Though using top journals and most-cited articles was a preliminary idea, it is the very foundation of our work. My original approach was to retrieve the top 1,000 cited articles from bioethics-related journals, which covered 100 journals and 52,000 articles. After some discussion, we decided to focus on the top 20 articles each year, which we boldly refer to as the “highlights of bioethics”.

We are aware that citation count is a popular yet controversial indicator, and we refrain from associating citation counts with quality. Instead, we are more comfortable with the idea that citation counts can partly reflect the “influence” or “impact” of the article to its discipline. Citation in a sense indicates peer recognition (positive or negative), researchers cite others either to agree or disagree, to build on predecessors’ idea or to refute it and establish a new one. Either way, those top cited articles have research significance to both the field and the community.

more…

Mind the Gap: Ethical Failures in the Treatment of Chronic Fatigue Syndrome

6 Dec, 16 | by miriamwood

Guest Post: Charlotte Blease & Keith Geraghty

Article: Epistemic injustice in healthcare encounters: Evidence from chronic fatigue syndrome by Blease, Carel, & Geraghty

Some illnesses are uncool.

That might sound like an inflammatory comment – especially for a medical journal, yet perhaps the biggest concealed fact in medicine is that hierarchies of diseases exist among patients and healthcare professionals. A caste system of illness influences how patients perceive their health complaints, whilst health professionals also hold biases that influence how they treat and rank patients in the medical pecking order.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs. The truth about CFS/ME is that it is a medically contested illness; the NHS and NICE guidelines acknowledge that there are massive gaps in our current understanding around the illness, its cause and its impact on patients. CFS/ME is also illness that can devastate lives, leaving many housebound, bedbound and isolated, not just from society but also in terms of medical support.

more…

The Moral Agency of Institutions: Effectively Using Expert Nurses to Support Patient Autonomy

5 Dec, 16 | by miriamwood

Guest Post: Sonya Charles

Article: The Moral Agency of Institutions: Effectively Using Nurses to Support Patient Autonomy

When you think of nurses, what do you think of?

Florence Nightingale? Nurse Ratchet?

A sassy, but competent woman in scrubs?

Popular culture has not always been kind to nurses and, even when it has, it rarely gives an accurate depiction of what nurses actually do. We might shrug off the misrepresentation of nursing as popular culture rarely gives an accurate depiction of many areas of life. Unfortunately, unlike other professions, these misconceptions of nursing spill over into nurses work environment as well.

In this paper, I consider how traditional views of nurses still undermine nurses’ professional autonomy. Certainly, those who work in modern hospitals have a better sense of what nurses do; however, the hospital, as an institution, is still set-up with a traditional hierarchy in mind. I argue that we need to shift hospital policies and power hierarchies such that nurses can achieve professional autonomy (both as a profession and as individual practitioners). Not only is this good for nurses, but it is also good for patients.

more…

The Ethics Liaison Program: Building a Moral Community

2 Dec, 16 | by miriamwood

Guest Post: Sarah Bates
Article: The Ethics Liaison Program: Building a Moral Community

As challenges to health care delivery increase over time, it is becoming more and more important for hospitals to maintain a strong institution-wide moral culture. But the common model of employing one or a few “ethicists” can lead to the misconception that ethics is the responsibility of those individuals alone, rather than that of all staff throughout the hospital. Meanwhile, staff members who lack dedicated time for ethics-related work, but who are interested in contributing to that work to the extent that their schedules permit, lack a means by which to do so.

The Ethics Liaison Program at Beth Israel Deaconess Medical Center (BIDMC) helps to address those problems at our institution. The 75-plus Liaisons represent clinical and nonclinical areas throughout BIDMC. They spread awareness of Ethics Programs throughout the medical center, communicate between the three ethicists and colleagues in their own work areas, and take on ethics-related projects connected to their work. By “Ethics Programs,” we mean the three-person Ethics Support Service (who conduct ethics consults) and the Ethics Advisory Committee that oversees them, as well as the Liaison Program itself.

The Liaison Program is a win-win for both the Liaisons and BIDMC Ethics Programs. Liaisons join a supportive community that meets monthly to discuss the ethics consults conducted that month, as well as a related journal article. In addition to those monthly meetings, Liaisons can take advantage of educational opportunities, at BIDMC and beyond: monthly Ethics Case Conferences open to all BIDMC staff; ethics-related events and presentations at affiliated institutions; and an annual three-day bioethics course through the Harvard Medical School Center for Bioethics. Liaisons also benefit from mentorship and support to complete their projects. The Liaison Program facilitates as much ethics-related work as the Liaisons have time and inclination to complete.

more…

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.

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