Political, Rants&Rambles

Hard Choices

Some jobs nobody wants.

Telling a parent that their child is dying has to be up there with the worst jobs in the world, the flip side perhaps to telling them that you can save their child’s life. Telling parents that their very sick child cannot be helped, and worse still, you believe that keeping them alive is pointless and possibly damaging, telling them you’d like to switch off the machines keeping their child alive, must be amongst the most soul-destroying jobs in the world.

Recent newspapers have been full of the difficult case of the British boy Charlie Gard, the latest in a series of court cases in the UK when parents and doctors have disagreed about medical treatment for a child. Charlie Gard is a 9-month-old boy with the rare neurodegenerative disorder severe encephalomyopathic mitochondrial DNA depletion syndrome.

He is dependent on life support and has been in intensive care at Great Ormond Street Hospital for Children in London, UK, since October, 2016. In such disputes, typically, doctors regard life support treatment as “futile” or “potentially inappropriate”.

Parents, by contrast, want treatment to continue. In the current case, High Court Judge Mr Justice Francis has recently rejected the request of Charlie Gard’s parents for him to travel to the USA for an experimental medical treatment, nucleoside therapy. On April 11, 2017, Justice Francis ruled that it would be lawful and in Charlie Gard’s best interests to withdraw artificial ventilation and provide palliative care. Charlie Gard’s parents have appealed this ruling.

When doctors and the courts consider cases like this one, they often focus exclusively on the best interests of the patient. In some cases, however, it is uncertain whether or not treatment would be in the interests of the patient. Indeed, there could be stronger and clearer arguments to limit treatment on the basis of finite and scarce medical resources. Although it feels brutal, keeping this little boy alive inevitably means less money to spend on keeping other children alive.

The different ethical reasons that justify a decision not to provide treatment might come together, or they might come apart. If treatment would be both affordable and in the child’s interests, it should unquestionably be provided. If it is neither affordable, nor in the child’s interests, treatment should not be started or should be stopped.

Where there is uncertainty about the benefits and costs of treatment, parents’ views are crucial. But sometimes the picture is more mixed. Perhaps treatment is in the interests of the patient, but unaffordable within a public health system. In the case of Charlie Gard, the parents have raised money over the internet through crowdsourcing to enable him to be taken to the USA for medical treatment. That would mean that the resource issue is not relevant. Perhaps for him treatment would be affordable, but contrary to Charlie Gard’s best interests?

One way of thinking about what would be in someone’s best interests is to imagine a set of scales. On the right side of the scales are the reasons in favour of a course of action, on the left are the reasons against. If it were a question of weighing a small chance of a positive outcome against an empty scale, the balance would be tipped in favour of treatment, even if the chance (or magnitude) of benefit were tiny.

But there are often substantial negatives in the balance.

Although health professionals do their best to provide pain relief, sedation, care, and comfort to severely ill children and babies, that ability is finite and imperfect. Children on long-term ventilation often seem uncomfortable at least part of the time, they endure needles and invasive procedures, and might be distressed and unable to communicate the source of their distress.

It is possible to argue that the small chance (perhaps one in 10 000) of benefit would outweigh the negatives of treatment in intensive care. However, a shift in perspective casts that argument into doubt. Charlie Gard’s condition is extremely rare, but imagine that there were a sudden epidemic of mitochondrial DNA depletion syndrome affecting thousands of newborn babies. Would it be ethical to artificially ventilate for months thousands of infants to achieve some measure of improvement in one infant? Setting aside any consideration of resources, it seems wrong to subject thousands of infants to invasive and unpleasant life-support treatment to benefit one child. That implies that this chance of recovery is too slim to make treatment plausibly in the current child’s interests.

The reason why these decisions come to the court at all is because parents do not have an absolute right to make medical decisions for their children. Parents are given broad discretion about how to raise their children, for example, how to feed them, how to educate them, and whether or not to immunise them. Parents will not always make the best choices, but for the most part the state will not interfere or intervene. However, where parents’ decisions run a substantial risk of causing serious harm to their child, their decisions must be challenged, if necessary in a court.

When it comes to experimental treatment, there can be different reasonable views among health professionals about how to weigh up the chance of benefit against the burdens of the treatment. In the face of such disagreement, the decision properly belongs to the parents. Assuming the treatment is affordable, and the parents want it, it should be provided. However, when no health professionals think that the experimental treatment is worth pursuing, parents’ request for treatment should not be granted.

In the case of Charlie Gard, just one expert in the USA was prepared to provide experimental treatment. However, the expert admitted that the treatment had never been tried in a child with established encephalopathy and that benefit was “unlikely”; in his ruling, the judge clearly thought that this possibility did not represent a reasonable treatment option.

Decisions about life-sustaining treatment for critically ill children are fraught and difficult for all involved. Parents are, rightly, at the heart of the decisions that are made in intensive care. Their views about treatment are important, and their wishes are usually followed. However, there are limits. Sadly, reluctantly, doctors and judges do sometimes conclude—and are justified in concluding—that slim chances of life are not always better than dying. Providing comfort, avoiding painful and unhelpful medical treatments, supporting the child and family for their remaining time: sometimes that is the best that medicine can do, and the only ethical course.

Pending appeal Charlie Gard continues to be kept alive.

Rants&Rambles, Science

STOP

Throughout history, humanity has been blighted by epidemics of communicable diseases that medical science and public policy have, to varying degrees, been able to control. Sanitation, immunisation, mosquito nets, and antimicrobial agents are examples of developments that have helped to generate substantial reductions in cholera, dysentery, smallpox, measles, HIV, tuberculosis, and many other infectious diseases.

More people die in the developing world from non-communicable disease than communicable, though it can be tricky to raise funds for heart attacks over diphtheria. Non-communicable diseases are now emerging as major burdens in low-income and middle-income countries. This is especially true of the epidemics of lung cancer, chronic obstructive pulmonary disease (COPD), cardiovascular disease, and other disorders that are caused by tobacco smoking.

We know it’s bad for us to smoke, but maybe not quite ho bad.

A new report in The Lancet using data from the Global Burden of Disease Study provide comprehensive estimates of death and disability caused by smoking at the country level. The findings are sobering. In 2015, smoking caused more than one in ten deaths worldwide, killing more than 6 million people with a global loss of nearly 150 million disability-adjusted life-years.

Smoking prevalence and consequent morbidity and mortality are now falling in most (but not all) rich countries, but future mortality in low-income and middle-income countries is likely to be huge.

Worldwide, one in four men, and a total of 933 million people, are estimated to be current daily smokers, and 80% of these smokers live in low-income and middle-income countries. Half of these, or half a billion people alive today, can be expected to be killed prematurely by their smoking unless they quit.

At present, smoking prevalence is still low in countries with a low socio-demographic index, but, on past experience in richer countries, it is only a matter of time before men and then women in all countries take up smoking, and in due course die from lung cancer, COPD, and other diseases caused by smoking, as has happened in the richer world. Even though the prevalence of smoking is decreasing in many low-income and middle-income countries, including many of those with the most smokers (eg, China and India), population growth means that the number of smokers, and hence the burden of harm from smoking, continues to rise.

Responsibility for this global health disaster lies mainly with the transnational tobacco companies, which clearly hold the value of human life in very different regard to most of the rest of humanity.

For example, the latest annual report from British American Tobacco (BAT), historically the most global of today’s five transnational companies, details with apparent pride their geographical diversity, strong earnings and market share growth, market leadership in more than 55 countries, and manufacturing facilities in 42 of them.

In 2016, BAT sold 665 billion cigarettes, making £5·2 billion in profit; and recorded rising profits across most of the world. Countering the heft and influence of commercial behemoths such as this demands human resources, governance, expertise, and financial backing that few rich countries have yet to fully establish, let alone those countries at the lower end of the development spectrum.

The WHO Framework Convention Alliance provides detailed guidance to support implementation of a growing range of effective tobacco control policies, including taxation, advertising bans, smoke-free policies, and protection against the vested interests of the tobacco industry, but, in most parts of the world, translating this guidance into effective legislation has a long way to go.

Like in many rich countries, tobacco control legislation too often becomes mired in procedure and delayed or otherwise undermined by tobacco industry misrepresentation of science, fearmongering over tax revenue and illicit supply, corporate social responsibility activities, offers of help drafting tobacco laws, threatened or real legal action, and, in some countries, economic dependence on tobacco growing, and conflicts of interest.

The persistence of smoking in the countries first affected by the tobacco epidemic reflects decades of failure first to recognise smoking as a health problem, and second to take decisive action to implement the policies currently promoted by the WHO Framework Convention on Tobacco Control, but articulated long ago in the Royal College of Physicians’ report of 1962

Today, the smoking epidemic is being exported from the rich world to low-income and middle-income countries, slipping under the radar while apparently more immediate priorities occupy and absorb scarce available human and financial resources. The epidemic of tobacco deaths will progress inexorably throughout the world until and unless tobacco control is recognised as an immediate priority for development, investment, and research.

Rich-world experience also teaches that where the tobacco industry leads and succeeds today, so the alcohol and food industries follow tomorrow

Rants&Rambles

Truth

I was once told by “he who knows everything and knows it best” that my knowledge was severely limited because the UK media just plain lies. It tells lies. Where it doesn’t lie, it omits to tell the truth.

I was told this on the basis of an article this guy (it’s always a guy, isn’t it?) about football hooliganism read on a plane highlighting a problem with a UK club that this fellow followed. The violence had not been reported in the UK, or at least, nowhere where this chap had read it.

Aside from the madness of being lectured by someone who knows nothing about the media I consume, who clearly has a very limited consumption himself and on the basis of “foozball” it’s a strange idea in the modern world. Yes, there clearly is a bias within national media to report stuff that is topical and interesting and since most of the people writing in that media are from the country involved, there’s probably more of a bias than any of us recognise at the time.

We just don’t find the same things as exciting or interesting as our neighbours. So I subscribed to a number of different media from around the world and waited to be enlightened.

There really isn’t that much of a difference, truth be told. The UK is desperately interested in who gets to become next PM. No one else really cares too much. The US is desperately interested in the actions and inaction of President Trump and the machinations around the Affordable Healthcare Act. The UK less so. Der Spiegel is interested in Brexit and in the manoeuvrings of Putin, plus the rise of populism as opposed to popularity. And Australia is concerned with China more than seems right or rational to a Brit.

But then there’s some international crisis such as the malware cyber attack yesterday which has obviously had a huge impact almost everywhere, and at home has hit the NHS hard.

A new strain of ransomware — malicious software that encrypts a computer’s files and then demands payment to unlock them — spread rapidly around the world on Friday. This map shows tens of thousands of Windows computers that were taken hostage by the software, a variant of the WannaCry ransomware

Since the UK is pretty transparent about our disasters and talks about them in English, the US media has lots of information and seems to have run with the story. Most damage is said to have occurred in Russia, but translating those stories, once you’ve found them, is pretty expensive for the mainstream media outlets. So the US talks of the crappy NHS tech systems not being updated, the underlying tech code being probably sourced from code stolen by from the American secret services, the NSA, so providing both an excuse to bash the British health system (“Just look what happens with socialised medical care!) and a perverse but very real sense of pride in the amount of damage created by a dangerous American product.

In the UK, we’ve also run with the crappy NHS side of the story, because there’s nothing a Brit likes more than knocking their own society, but mitigated also by the story of a guy who sees to have become the accidental hero of the piece. The malware code included an off switch of sorts whereby the code looked up a site (non-existent domain name) for no apparent reason. A British coder, seeing this though to buy up the domain ($15) and make it live, at which point thousands of references came through to the site and virus spread was halted.
The plucky Brit saves America narrative never appears in America.

 

Home

Grey

It’s a grey day, which makes the weather forecast of warmth seem just a little unbelievable. It has been the driest Spring for decades and my driest of dry gardens is not enjoying life. The plants know that they’re not going to survive a hosepipe ban later in the year given that they’re already dependant on a weekly watering.

The hanging baskets which always suffer from my laziness when it comes to watering are already starting to look reproachful and they’ve only been out there a fortnight.

On the upside, the weather is great for tennis. Dry, with no wind to blow away the clouds means we had an entirely uninterrupted three hours thrashing on the tennis courts in our first match. And afterwards when the forensics begin, obviously the first comment is just “they were better than us” and the second is to question how many of their players “played down”.

In theory, people should play to their level in these little tournaments. Where a club gains a new player though, it might not be clear how good or otherwise they might be, so some wiggle room is left. A player can play at one level for two matches, to find their feet, before settling in that division. So where we play a bigger club with two or three teams across the various divisions, the early matches are always full of ringers from divisions much further up the tree.

So it shouldn’t be a surprise that “Rose” turned out to be a regular playing in their first team last year, a team that plays two entire divisions higher than us. It’s a bit of a surprise that she was playing in pair 2 of 3, but, despite being against the spirit of the thing, it was certainly well within the legal rules.

Our next match is with a small club, like us able to pull together just a single team, so will probably play out a bit differently.

Obviously if you play a competitive game, you have to be prepared to lose with as much grace as you win.

Let’s hope we thrash them.

Home

Digging over Old Ground

A friend is restructuring and replanting an entire garden in her new house. I am agitating to extending another flower bed. She is hating the whole process whilst I’m desperate to begin.

I love a good garden project.

Last year we extended the back bed and put in nine new David Austin roses. It was going to be a stretched eight, well they are reasonably expensive even bare root, but a spare arrived in the post so in it went. Sods law it turns out to be an entirely different variety but with a bit of luck…

They seem to be growing well and have coped with the narcissus and tulips for Spring. Hopefully the geranium (Roxanne Gewat) will look good underneath though I’ve also stuck in a few white gladioli and can’t quite remember where. This is why I’m a lousy gardener – too many plants and too bad a memory.

With the daffodils long gone and the tulips going over, it seems a good time to think about ordering for next year in that never-ending joy-fest of gardening with bulbs. They carry with them all of the promise of a beautiful Spring and the only downside is persuading the glum companion that an afternoon digging is worthwhile. He always loves the flowers, but not so much the dirt.

I’ve built up a wishlist on the website for PeterNijssen with as many of the ones from last year that I can remember. For under the hedge with the narcissus (a successful idea last year) I’m going to plant some tulip bakeri to follow on and hopefully cheer up the space.

And maybe if my potted up spares of the woodruff take, I’ll stick some of them down there too. The danger with the latter is that it spreads into the rest of the garden, like the thug it’s advertised as. 

In the back border, along with the roses I’m going to add some black and whites so something like Queen of the Night and the white Purissima.

And I might add some under the wisteria where the tulips from last year have really brightened the place up.

In the front bed, I’m just going to abandon the colour scheme and add some scarlet tulips to the ones that already live there. I can’t get rid of them so may as well go with the flow.

In the front garden, I’m going to chuck in some soft pink tulips like an Angelique

Maybe some whites would do nicely as well but four types of tulip seems a sufficiency.

Depending on what happens to the fritillary bed (to widen or not to widen) I could add some mini-narcissus into the front, but the reality is that I have larger ambitions.

If we make the bed as big as I’d like, then I could fit some iris germanic (bearded) into the bed along with some long flowering favourites from the rest of the garden. What’s not to love about some space for yet more perennial wallflowers, some penstemons or a hardy geranium or half-hardy salvia or two?

It’s not sensible of course, I should really let one project settle, take stock and then start in on the next phase. I’m too greedy. This is why my garden will never be elegant. Fun, though!

Food

Rosemary, Olive Oil & Orange cake

INGREDIENTS

FOR THE CRYSTALLIZED ROSEMARY:

  • 10 small rosemary sprigs, no more than 1 inch/3 centimeters each in size (see note)
  • 1 egg white, lightly whisked
  • 2 teaspoons granulated or superfine sugar (caster sugar)

FOR THE CAKE:

  •  About 2 tablespoons/30 grams unsalted butter, softened, for greasing the pan
  • 2 cups/240 grams all-purpose flour(plain flour), more to flour the pan
  • ¾ cup/160 milliliters extra-virgin olive oil
  • ½ cup plus 1 teaspoon/120 grams superfine sugar (caster sugar)
  • 1 tablespoon finely grated orange zest (from about 1 1/2 oranges)
  • 1 ½ tablespoons/7 grams packed finely chopped rosemary leaves
  • 2 large eggs
  • ½ cup/130 grams sour cream
  • 2 teaspoons baking powder
  • ¼ teaspoon salt

FOR THE ORANGE ICING:

  • 1 ½ tablespoons freshly squeezed orange juice
  • 2 ½ teaspoons freshly squeezed lemon juice
  • 1 ¾ cups/175 grams sifted confectioners’ sugar, or 1 1/2 cups/150 grams sifted icing sugar

PREPARATION

  1. At least 6 hours before you plan to ice the cake, prepare the crystallized rosemary: Brush rosemary on all sides with a little of the egg white and then dip it in the sugar, so the needles are lightly coated on all sides. Set aside on a wire rack to dry. Repeat with remaining rosemary.
  2. Make the cake: Heat oven to 325 degrees Fahrenheit/160 degrees Celsius. Generously grease a 9-inch/23-centimeter Bundt pan with half the butter and refrigerate for 10 minutes. Butter again, generously, and then flour it, tapping away the excess.
  3. Put olive oil, superfine sugar, orange zest and chopped rosemary leaves in the bowl of an electric mixer fitted with the whisk attachment. Whisk on medium speed until combined, then add eggs, one at a time. Whisk for another minute, until thick, then add sour cream and mix until combined on low speed. Scrape down the sides of the bowl and the whisk.
  4. Sift flour, baking powder and salt together into a small bowl. Add the dry ingredients to the olive oil mixture and mix until combined. Increase speed to high and whisk for 1 minute.
  5. Scrape batter into the Bundt pan and smooth the top with a small spatula. Bake for 30 to 35 minutes, or until cake is cooked and a skewer inserted into the middle comes out clean. Remove from oven and let cool for 10 minutes before inverting onto a serving plate. (You may want to trim the cake at this stage, if it rises unevenly, to allow it to sit flat on the plate.)
  6. Prepare the icing: In a small bowl, whisk together orange juice, lemon juice and confectioners’ sugar until smooth. When the cake has cooled, drizzle icing on top, allowing it to drip down the sides of the cake, then top with the crystallized rosemary and serve.

Political

Challenging

Brexit is going to be difficult for any number of reasons.

Challenge #1: Complexity

“Civil servants are responsible for an increasingly complex range of tasks and projects.”

The National Audit Office’s first key finding highlights the difficulties faced in any modern state of delivering effective, value-for-money public services with finite resources and in an environment of technological change and increasing public expectations. The complexity of introducing comprehensive reform of the welfare system through the Universal Credit policy, and the ongoing discussions about the provision and funding of adequate social care to an ageing population are two salient illustrations of this challenge.

The government also currently has a roster of 143 highly complex, major transformative projects underway across Whitehall with estimated whole-life costs of £405bn. Each involves a range of ministries and agencies and if they are to be brought to a successful conclusion, each requires clarity of objectives, careful planning and effective whole-life project management. Each must also be delivered alongside the rest of the government’s workload.

The delivery of major projects – and specifically the management of complexity – has been an area of weakness on a number of occasions for the civil service in the past, resulting in some very significant cost over-runs (for example, Labour’s National Programme for IT). Both the NAO and the House of Commons Public Accounts Committee identify the complexity challenge as an area of particular concern.

Brexit will require the UK to untangle itself from incredibly dense and complicated legal agreements built up over 40 years. The UK government’s starting position seems to be to adopt a broad brush approach, sort out the basic idea and fill in the detail (based on trust) some time later. The EU seem to want to tie down the detail on each decision point before moving forwards to the next. Not much trust there.

Challenge #2: Capacity

“Weakness in capability undermines government’s ability to achieve its objectives […] many delivery problems can be traced to weaknesses in capability.”

Exacerbating the first challenge is that of capacity. The civil service has seen a 26% reduction in its numbers since 2006 – a reminder that while the austerity policies pursued since 2010 have had a very significant impact on capacity, the issue of resource constraints has been a longer-term problem. (Consider, for example, the major staff reductions undertaken by the Foreign and Commonwealth Office over the last decade.) As Brexit formally begins, the civil service is smaller than at any point since the end of the Second World War.

Numbers only tell part of the story, however. Accompanying this is an emerging skills deficit in three key areas – digital, commercial and delivery – that will affect the overall capacity of the civil service to meet the expectations placed upon it. The NAO believes, for example, that this capabilities gap contributed to the collapse of the InterCity West Coast franchising process in 2012, a view supported by a 2013 Transport Committee report.

Just to enable the delivery of existing programmes, the NAO suggests an additional 2,000 staff will be needed in digital roles over the next five years, at an estimated cost of between £145 million and £244 million. (The Government’s own Digital Service and Infrastructure and Projects Authority indicate the cost of filling the delivery skills deficit may actually be even greater.)

Challenge #3: Feasibility

“Government projects too often go ahead without government knowing whether departments have the skills to deliver them.”

This third challenge identified very much emanates from the problems caused by the first two. The government, according to the Public Accounts Committee’s 2016 report, continually “adds to its list of activities without effective prioritisation”. When we consider some of the major projects currently underway – Crossrail/ Thameslink, Hinkley Point C, High Speed 2, and Trident Renewal – criticism by John Marzoni, Chief Executive of the Civil Service, that government is doing “30% too much to do it all well” does not seem misplaced.

A key issue has been a lack of consideration at the outsetof major projects of their overall feasibility. In particular, insufficient attention is paid to whether the requisite skills are available within departments, whether the right people are in the right posts, whether there is sufficient senior project leadership, etc. (The NAO notes that in the 2015-16 period, 22% of posts were “unfilled for senior recruitment competitions”.) Ultimately, government lacks “a clear picture of its current skills” because of insufficient workforce planning.

Moreover, efforts to remedy this problem – for example through the introduction of Single Departmental Plans – have been questioned. The NAO has therefore called on government to clearly prioritise projects and activities as a matter of urgency until it is able to fill the capability gaps outlined above.

Challenge #4: Trust

While not addressed by the NAO report, the issue of trust in the civil service is also hugely important.

Problems of complexity, capacity and feasibility all risk fuelling feelings of scepticism that the civil service is equipped to meet the expectations placed on it. For example, Margaret Hodge, Chair of the Public Accounts Committee from 2010-2015, highlighted concerns that officials did not recognise the consequences of poor decisions: “all too often the responsible officials […] felt no sense of personal responsibility because it was not their own money.” Major IT projects were the subject of particular scepticism: “[If] any official mentioned a new IT project in their evidence to the committee, we would laugh at the idea that this might be introduced on time, within budget and save money.”

Alongside this, though, is the problem of what might be termed political trust, and particularly the perception among politicians that the civil service is unwilling to enact policies it may disagree with, something most new governments (rightly or wrongly) have been concerned with. Perhaps the most extreme recent example of this was Michael Gove’s efforts as Education Secretary in the Coalition government to implement his reforms in the face of what he and some of his own officials considered institutionalised opposition from the education establishment.

Lack of trust in the civil service’s capacity, whilst damaging, can be remedied by a government willing to prioritise change and back this up with sufficient resources. Lack of political trust, however, can be more corrosive, particularly if it results in toxic relationships between ministers and the officials responsible for enacting their policies.

The Brexit challenge:

Brexit will take up a huge amount of political and administrative bandwidth in the coming months and years. In the words of Sir Jeremy Heywood, the current Cabinet Secretary, it will be “the biggest, most complex challenge facing the civil service in our peacetime history.” It is also a microcosm of how the four key challenges of complexity, capacity, feasibility and trust have the potential, if poorly managed, to create a ‘perfect storm’ for the officials responsible for delivering it.

At the moment, the Tory Party is riding high with a weak opposition party and a free hand, but what happens if the whole thing goes tits up, no snow but four or five years down the line?

If brexit does turn out to be a disaster, it will be a Tory disaster as damaging as the Iraq War has proved for Tony Blair’s legacy. So Ms May had better get it right, better make it work.

Food

Cheese pastries

Sometimes all you want to do is eat so soft gooey cheesy pastries straight from the oven.

There really isn’t much of a recipe beyond find a bowl, mix some cream cheese with herbs of your choice (thyme works well) and wrap the mix in some filo pastry.

Most packs of pastry come with their own advice on oven temperatures so that’s about it.

You can choose to layer the cheese between pastry sheets or just roll them into rolls and then wrap the rolls like snails.