A transatlantic review of the NHS at 60

BMJ 2008; 337 doi: 10.1136/bmj.a838 (Published 17 July 2008)

Cite this as: BMJ 2008;337:a838

Author Affiliations

1.     ¹Institute for Healthcare Improvement, 20 University Road, 7th Floor, Cambridge, MA 02138, USA

1.     dberwick@ihi.org

At the NHS Live conference celebrating 60 years of the NHS at the beginning of July, Donald Berwick explained why he admires the UK health system and how it could be even better

Cynics beware, I am romantic about the National Health Service; I love it. All I need to do to rediscover the romance is to look at health care in my own country.

The NHS is one of the astounding human endeavours of modern times. Because you use a nation as the scale and taxation as the funding, the NHS is highly political. It is a stage for the polarising debates of modern social theory: debates between market theorists and social planning; enlightenment science and post-modern sceptics of science; utilitarianism and individualism; the premise that we are all responsible for each other and the premise that we are each responsible for ourselves; those for whom government is a source of hope and those for whom government is hopeless. But, even in these debates, you are unified by your nation’s promise to make health care a human right.

No one in their right mind would expect that to be easy. No wonder that, even at age 60, the NHS seems still immature, adolescent, searching.

You could have chosen an easier route. My nation did. It’s easier in the United States because we do not promise health care as a human right. In America, people ask, “How can health care be a human right? We can’t afford it.” As a result, almost 50 million Americans, one in seven, do not have health insurance. Here, you make it harder for yourselves, because you don’t make that excuse. You cap your healthcare budget, and you make the political and economic choices you need to make to keep affordability within reach. And, you leave no one out.

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Mr Magoo strikes the NHS

I am old enough to remember cartoons of Mr Magoo, the endearing short-sighted and well-intentioned buffoon who (if it had been possible) would have driven his car over the arch of the Sydney Harbour Bridge rather than use the roadway.  Always his adventures ended with him chortling in mock triumph, “You’ve done it again, Magoo!”

There is a story of an older man driving on the wrong side of a freeway, observed by a news helicopter that transmitted the message to radio and, freakishly, the man’s wife heard it and phoned him. “There’s a person driving down the wrong side of the freeway!” she told him. “That’s true!” he replied, “But there’s more than one of them!”

The British prime minister, Mr David Cameron, ably assisted by his health secretary  Mr Andrew Lansley, are of the Magoo mould. They have proposed legislation radically changing the English (not Welsh, Northern Ireland or Scottish) NHS.

The Bill, which emphasises enhanced privatised competition in the search for efficiency, is now ringing alarm bells everywhere.  Most of the royal colleges are up in arms about it, calling for its rejection in the House of Lords.

“In spite of being offered £60bn of public funds, GPs have voted against the reforms,” writes Philip Stephens in the Financial Times.

The enabling document runs to several hundred pages and many able minds have wilted trying to understand it, including that of the notable commentator Martin McKee from the London School of Hygiene.  On balance, McKee thinks the legislation is a disaster.  The politics are convoluted. Mr Cameron and his minister appear to driving on, despite the flow of oncoming traffic.

More from the 13 February edition of the Financial Times (hardly a Fabian tract):

“Good policy can make for bad politics. Useful reforms often invite short-term unpopularity. Sometimes the dynamics are the other way round. Bad policy courts instant popular acclaim…David Cameron and Nick Clegg have pulled off a rare feat. The coalition government’s National Health Service reforms unite bad policy with worse politics. They foreshadow a costly bureaucratic upheaval and the fragmentation of health provision. They also promise to bury Mr Cameron’s political ambition to prove the Tories can be trusted with the NHS.

When Mr Lansley first unveiled his plan he failed to address a basic question: what was the problem this bureaucratic convulsion was designed to solve? The question still remains unanswered. The health secretary admits he could have achieved 90 per cent of his objectives without any legislation.

During the next few weeks the legislation will suffer a mauling in the House of Lords. Andrew Lansley [the health minister] has been obliged to submit more than 100 amendments to his own bill. Many more changes will be voted through against the health secretary’s wishes. Mr Cameron, though, is battening down the hatches. Downing Street’s calculation is that once the bill becomes law – albeit in emasculated form – the fuss will die down. The prime minister is making a mistake. The real problems will start with implementation.

The NHS needs modernising. A bigger say for clinicians, local accountability and more choice are among the things that would make it more responsive to patients. Britain should be spending more on primary care and less on hospital beds. It needs fewer general hospitals and more centres of specialist excellence. Health and social provision require seamless integration. There is a place for competition.

Some of these elements are found in Mr Lansley’s blueprint. They are buried, though, in the organisational upheaval.”

What a mess, Magoo!  As Hillary Clinton discovered, and Barack Obama rediscovered, it is easy to stir the bees with serious health reform proposals.  Stings are plentiful and the honey is scarce.

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WE NEED TO TALK ABOUT...SCIENCE AND ETHICS

We need to talk about …science and ethics.  I am not persuaded that we have the relation between science and ethics clear.  Committees established to ensure that medical research is ethical should surely do that – no more and no less.  Instead, research ethics committees quite happily make judgements about the scientific integrity of proposed research. 

Back to the beginning.  When research ethics committees were established by Lovell and McCaughey in Australia under the NHMRC umbrella, they were to have lay people, lawyers, ethicists and clergy on them as well as members from the research community. Ethics are not the same as science. Society has an ethical code, give or take, and that is understood as well by lay members of these committees as it is, or better, than the research workers. 

The ethics committee were to be multiple and local.  They were to represent the view of the local community in assessing whether research should go ahead and under what conditions of informed consent, safety, ethical integrity and confidentiality.  Their job was to review the ethics – not the science, not the financials, not what is now known as ‘governance’ (by which is meant all the liability, contractual, public resource use matter pertaining to the research). 

Not only was reviewing the science not their job, the committees were not constituted to do it even if they wanted to.  They were not like NHMRC project grant review panels. And yet in the most recent documents about how eastern Australia is now moving to an arrangement whereby one ethics committee can review a multicentre trial for conduct anywhere in Australia, the documents speak of ‘mutual acceptance of ethical and scientific review’ of multi-centre clinical studies by any one accredited Human Research Ethics Committee.

The defenders of this faith assert that scientific members of an ethics committee can make the necessary scientific assessment of research proposals, or call on mates (I presume) who can help.  The clergyperson, the lawyer and the lay people on the committee are disenfranchised form this discussion.  Secret scientists business, it would seem.

Research that lacks scientific integrity, because it is poorly thought out, wastes people’s time, has sample sizes that are inadequate or is in other ways weak (and there is a lot of stuff that masquerades as research that matches these criteria) simply should not be done – it is unethical. It is unethical to invade people’s privacy because a study is fatally flawed.  That ethical call can be made by a scientific review committee, composed of scientists from all relevant disciplines.  Those projects that are scientifically sound are the only ones that should go to an ethics committee for further assessment.

There are lots of reasons why this ideal arrangement does not work in practice everywhere – staff shortages, ethics committee members suffering from delusions of grandeur, and administrative ignorance about the nature of ethics, to say nothing of pharmaceutical companies rattling the pill bottle about how, after a decade of development, their latest product cannot be held up by such trifling impediments as ethical review.

Is this arrangement good enough?  No. Could it be changed?  Yes – by insisting that scientific and ethical review be separated.  Not so hard after all.

Ethicists vital to avoid repeating horrors of past*

I recently visited an exhibition entitled Deadly Medicine in New York. It is about eugenics.  It disabuses the viewer of all delusions about the past moral purity and ethical rectitude of both medicine and public health. It is about our professions’ misguided involvement in the eugenic movement in the 1930s. Little by little it slipped and slid from banal rhetoric about preserving genetic purity to the enormity of Auschwitz-Birchenau. And the medical and public health professions were deeply, deeply complicit.

Excavating the foundations in 1966 for the twin towers of the World Trade Center, produced nearly 1m cubic metres of landfill. It was dumped into the nearby waters of the Hudson to extend the southern tip of Manhattan to form Battery Park City.  The New York Museum of Jewish Heritage was built on the site, a 26 metre-tall granite hexagon representing the six million Jews lost in the Holocaust and the six points of the Star of David.  Now, within sight of the waterfall memorials to the lost of 9/11, it shares an emotional bond with its sinister madness. It is heavy with grief and shock.

It is in this darkly serious place that Deadly Medicine, an educational exhibit from Washington DC, is displayed.  A late winter afternoon is probably not the psychological moment to see such an exhibit. 

Eugenics was a concept that received international endorsement from the scientific community in the early part of the 20^th century.  The eugenics movement in Germany, with which the exhibit is principally concerned, began with sterilization of feeble minded men and women out of concern that racial purity was at risk if they reproduced.  The nation felt the immense loss of healthy young men in World War I. ‘Eugenics advocates in Germany,’ reads the exhibition brochure, ‘included physicians, public health officials, and academics in the biomedical fields, on the political left and right.’

Eugenics were absorbed into the Nazi ideology and enshrined in German law by 1935.  World War II led many who had opposed eugenic euthanasia to now endorse it ‘for the good of the Fatherland’.  The killing of children was expanded to adults in 1939 and ‘patients in private, state and church-run institutions’ were especially vulnerable.  From January 1940 to August 1941 70,000 such people were killed using carbon monoxide in gas chambers ‘disguised as showers’.

Paediatricians helped sort children with rickets or developmental problems into those who should be euthanased.  Few of the doctors suffered as a result of their involvement in the eugenics program and the relation between Hitler and organized medicine was strong.  One psychiatrist was tried for war crimes and executed.  Paediatricians, psychiatrists, physicians and others who participated in the death panels went from strength to strength.  Eugenic theoreticians, with their statistical data and scientific notions of genetics and natural selection who subscribed to the prevailing Darwinian orthodoxy, prospered once the war was over. Pathological specimens taken from the dead were studied for years beyond the end of World War II. Business as usual.  

Medical people helped with the gas chambers, initially reserved for those who had an infirmity or deformity.  The slide into their use as a means of exterminating millions of Jews occurred slowly and methodically, often with medical advice.  Heinrich Himmler saw them as a less traumatic way of ridding the world of Jews because his SS troops were disturbed by having to shoot over 1 million Jews in the open air as part of the Russian campaign.  Then followed the mass extermination of Jews using the Zyklon-fed gas chambers.  Nazi doctors helped selected the fittest subjects for labour rather than immediate death.

We have elaborate checks and balances to maintain the ethical standards for research in Australia.  Ethics committees are frequently pilloried because they impede (so it is said) the progress of science with their picky questions.  But we have no countervailing institution to keep medicine and public health practice on an even keel. 

The message of history suggests that we need to take this more seriously than we do.  It is not the bold leap into ethical error that we need to fear.  It is the slow shift, especially as the professions seek to curry favour with the power brokers in society – politicians, drug companies, the health bureaucracies to name three groups.  Grade report?  We could do a lot better – and should.  We must never forget.

*Printed in the Australian Doctor on 3 February 2012