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Archive for August, 2008

Time flies

As I was walking to the station the other morning I noticed something weird about the digital clock on one of the buildings. I stopped and captured it using the video function of my digital camera. Then, just for fun, I imported it into imovie8 and plopped the opening bars of a Jimmy Nail song into the soundtrack.

Here it is……..weird, huh?

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This is rule number three in Daniel Pink’s “Johnny Bunko” book which I mentioned a wee while back. There are two reasons why both the Johnny Bunko rules and this particular rule came to my mind this week.

Firstly, I’ve just been finding that in recent times this little phrase has often popped into my mind. “It’s not about you”. The value of this phrase is its power to re-orientate you. It’s only natural that our inner subjective experience is dominant. So when we feel certain strong emotions – anger, frustration, sadness, and, yes, even happiness – our default understanding of what is going on tends to emerge from the emotions themselves. It’s only a short (unconscious) step from there to “Why is he (or she) treating me this way?” or “Why is he (or she) upsetting me?” or some such similar question. The assumption is that the other person is behaving the way they are with the intention of having an effect on us. Not just an intention, but, a primary intention. We find ourselves thinking that the person is behaving this way because they want us to have a certain emotion. In other words, if it wasn’t for me, he (or she) wouldn’t be behaving this way. Well, you know, maybe in some instances, it’s true. But in many more instances it isn’t! Whether it’s true or not, however, this train of thought gives away our personal power to the other person. We give them the ability and the will to effect the emotions that we are experiencing. An easy, and a quick, way to undermine this whole reaction is to say to yourself “It’s not about you”. Just considering this as a possibility can be liberating. It allows you to shift your conscious focus from yourself to others. At best, it opens the doors to the possibility of a more empathic and more understanding interpretation of the other person’s behaviour.

“It’s not about you” also came into my mind recently when considering the advice a French philosopher, Hadot, who writes in his book “N’oubliez pas de Vivre”, about the almost spiritual exercise of taking a view from on high. When you climb a mountain and survey the world from the mountain’s heights you have an intense shift of perspective. Take this a little further and consider the viewpoint of one of the astronauts looking back at the Earth from the Moon. (Whenever I think that thought, I can hear Nanci Griffiths singing “From a Distance” inside my head!) Whether you physically climb or fly high above your daily world, or whether you take a journey in your mind using your imagination, this experience of looking down on life from on high also has the potential to give you an “It’s not about you” moment. You can become aware of your smallness and of the brevity of your own life in the grand scheme of things.

There’s another sense too in this “It’s not about you” perspective. Time and time again I hear patients tell stories of great suffering which shrinks or even, at least temporarily, disappears, when they connect to others, when they feel, express and act their love for others and in doing so feel a surge of love and meaning in their own lives. Managing to focus on others is not easy when your suffering is so great that it is overwhelming all aspects of your life, but those who manage it, even for short periods, often report feeling transformed.

There was a second reason why Johnny Bunko came to mind this week and that was the post by Daniel Pink on the Johnny Bunko blog where he related Barack Obama‘s Presidency bid to the six Bunko lessons. Go read it for yourself. It’s a good introduction to Johnny Bunko!

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There’s an organisation in England known as NICE – The National Institute for Health and Clinical Excellence. Many countries have their equivalent organisations. Their job is to inform health service policy but in fact their advice tends to be taken as the definitive word……if NICE says “no” then that drug will NOT be available on the NHS.

Their decisions cause controversy. Most recently they’ve been in the news over treatments for a cause of blindness and anticancer drugs which are indicated for kidney cancer. In trying to defend their decisions I’ve seen NICE spokesmen struggling to insist that they don’t make a decision on the basis of cost, but on “clinical cost effectiveness”. What does this mean?

Across on the NICE website you can find a very clear explanation. It’s all about QALYs – Quality Adjusted Life Years. This is an international formula for calculating the cost of improving the length and quality of a person’s life. Here’s the detail – (the FULL detail) –

Although one treatment might help someone live longer, it might also have serious side effects. (For example, it might make them feel sick, put them at risk of other illnesses or leave them permanently disabled.) Another treatment might not help someone to live as long, but it may improve their quality of life while they are alive (for example, by reducing their pain or disability).

The QALY method helps us measure these factors so that we can compare different treatments for the same and different conditions. A QALY gives an idea of how many extra months or years of life of a reasonable quality a person might gain as a result of treatment (particularly important when considering treatments for chronic conditions)..

A number of factors are considered when measuring someone’s quality of life, in terms of their health. They include, for example, the level of pain the person is in, their mobility and their general mood. The quality of life rating ranges from 0 (worst possible health) to 1 (the best possible health). (See the box below for an example of how this works in practice.)

What about cost effectiveness?

Having used the QALY measurement to compare how much someone’s life can be extended and improved, we then consider cost effectiveness – that is, how much the drug or treatment costs per QALY. This is the cost of using the drugs to give someone an additional year of life..

Cost effectiveness is expressed as ‘£ per QALY’.

Each drug is considered on a case-by-case basis. Generally, however, if a treatment costs more than £20,000-30,000 per QALY, then it would not be considered cost effective.

How a QALY is calculated

Patient x has a serious, life-threatening condition.

  • If he continues receiving standard treatment he will live for 1 year and his quality of life will be 0.4 (0 = worst possible health, 1= best possible health)
  • If he receives the new drug he will live for 1 year 3 months (1.25 years), with a quality of life of 0.6.

The new treatment is compared with standard care in terms of the QALYs gained:

  • Standard treatment: 1 (year’s extra life) x 0.4 = 0.4 QALY
  • New treatment: 1.25 (1 year, 3 months extra life) x 0.6 = 0.75 QALY

Therefore, the new treatment leads to 0.35 additional QALYs (that is: 0.75 –0.4 QALY = 0.35 QALYs).

  • The cost of the new drug is assumed to be £10,000, standard treatment costs £3000.

The difference in treatment costs (£7000) is divided by the QALYs gained (0.35) to calculate the cost per QALY. So the new treatment would cost £20,000 per QALY.

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What do you think about this?

I think it’s riddled with problems!

In reality, nobody can tell how many months of life any particular individual human being will live. In fact, the greater the length of the prediction, the less accurate it is. So, not only are we unable to predict accurately how long a person with a particular disease will live, we are also unable to predict how long a person with a particular disease will live if they take a particular treatment. We can work out the averages, work out the probabilities, but we cannot KNOW these figures for any single real person. The use of definite figures such as “8 months without treatments and 13 months with drug X” convey a false sense of certainty. They pretend to be “scientific” and therefore some kind of believable truth. But they are guesses. Informed guesses no doubt, but guesses none the less. If YOU are the patient, are you prepared to make your decisions on the basis of what happens to the statistical average person? Or do you still hope that you might be one of the people who do better than the average? After all, there are always people who will have a better than average experience and nobody can tell you whether or not you are going to be one of those people.

So, the QALY is based on an estimate of a life course. The length of life part of the calculation is a guess. It always is.

Secondly, what about the “quality” part? Who decides that on a scale of 0 to 1 (0=death and 1=perfect health) your quality of life can be assessed as 0.4 or 0.8 or whatever? The questionnaires used have been heavily criticised for picking life values which the authors of the questionnaires rate as important, not the life values which a particular patient might have. Who, in fact, can judge quality of life better than the person whose life it is?

These are not only my criticisms – here are few from the National Library of Health

  1. Values assigned to the quality of life component of the QALY may not reflect the values of patients receiving the interventions.
  2. They may lack sensitivity in some disease areas.  For example for chronic disease or mental illness, as quality of life measures largely focus on physical rather than psychological or social disability.
  3. Some feel that QALYs can over-simplify complex healthcare issues and suggest ‘quick and easy’ resource allocation decision.
  4. In QALYs, all the emphasis is placed on the size of the health improvement, without taking into consideration the starting point.
  5. There is an issue with distribution – it is thought that the QALY approach maximises total welfare without regard to how such welfare is distributed between people.
  6. There is also criticism that conventional QALYs don’t account for attitudes towards risk.
  7. There are several technical assumptions that are implicit within the QALY model, and there is evidence that these do not accurately reflect real life

But my doubts don’t stop there. Did you read the part about considering the actual cost of the QALY? £20,000 – £30,000 is the limit. If a treatment costs more than that, then it will not be allowed. Who decided that? Why not £10,000 – £20,000? Or £30,000 – £50,000? Doesn’t this make you uncomfortable? That we decide whether or not a treatment should be available on the basis of this financial limit? It certainly makes me uncomfortable. Should we accept that there has to be a limit at all? We make plenty of other decisions as a society about how money is spent without considering these kinds of limits – fighting wars in Iraq, Afghanistan, building nuclear missiles which know will destroy us all if we use them, paying some footballers more than £30,000 a week, increasing economic inequality…….you can choose your own pet spending decision.

We do need a debate about all of this, but let me ask you to think about this. If the patient with the disease under consideration is someone you love, someone you really, really care about, will you still be happy to accept a decision on the basis of QALYs?

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There was a headline item on the morning news which, even though, it wasn’t really new, was still shocking. In Lenzie, Scotland, the life expectancy of a child who lives there is 81 years. Eight miles away, in the East End of Glasgow a child of the same age as the one in Lenzie has a life expectancy of 53 years. It’s not just the fact that such premature death is so common in present day Scotland, but the difference! 28 years! Neither of these facts are trivial. Wouldn’t you think that such a problem would command the attention and action of a society? What’s the problem? Funnily enough, it certainly isn’t a problem to be pushed off into the NHS to solve. Yes, the NHS has to provide the services to help the people who are suffering from the illnesses which cut their lives so short, but this is a much more complex problem than one which doctors and health care teams can effectively address.

Research by Prof Wilkinson and others has made it crystal clear that economic and social inequality is the heart of the problem. If we don’t address that as a society, we will never bring about any significant change to consign such shocking headlines to history.

These startling facts come from the WHO’s Commission on the Social Determinants of Health.

Sir Michael Marmot, chairman of the commission, said: “The key message of our report is that the circumstances in which people are born, grow, live, work, and age are the fundamental drivers of health, and health inequity.” He added: “We rely too much on medical interventions as a way of increasing life expectancy.”

And what kind of response has come from the government to this report? Ann Keen, health minister for England said –

The UK is at the forefront of tackling health inequalities, but the challenge of reducing the gap in life expectancy is still very much an issue.

Really? At the forefront? In fact, over the lifetime of the present UK government, inequality has increased significantly, not decreased. Isn’t it time to deal with this issue more honestly?

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rudbeckia

Rudbeckia are from the Aster family. These ones growing the garden at Glasgow Homeopathic Hospital (GHH) struck me as particularly lovely.

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I stumbled upon this the other day – from the designer, Bruce Mau. There are 43 items on his list. Take a look, they’re inspiring. Here are three which jumped out at me –

Process is more important than outcome. When the outcome drives the process we will only ever go to where we’ve already been. If process drives outcome we may not know where we’re going, but we will know we want to be there.This might be good advice for designers, but it’s even better advice for doctors! An awful lot of contemporary medical practice ignores this. In Medicine we seem to be obsessed with the idea of outcomes, yet life isn’t made up of end points, it’s a continuous flow right through to death. It’s better to focus on processes.

Collaborate. The space between people working together is filled with conflict, friction, strife, exhilaration, delight, and vast creative potential.

I know it’s often said that human beings are social animals and that we gain much more from working together than we do by trying to do things all by ourselves, but what I liked about this point, was that the recognition that working together isn’t always easy, and even when it isn’t, it still contains vast potential for creativity and solutions.

Coffee breaks, cab rides, green rooms. Real growth often happens outside of where we intend it to, in the interstitial spaces — what Dr. Seuss calls “the waiting place.” Hans Ulrich Obrist once organized a science and art conference with all of the infrastructure of a conference — the parties, chats, lunches, airport arrivals — but with no actual conference. Apparently it was hugely successful and spawned many ongoing collaborations.

What a great idea! Holding a conference without any of the speeches, presentations or “plenaries”!


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Life’s amazing variety

I recently read “Findings” by Kathleen Jamie. She quoted a short phrase from a Louis MacNeice poem in one of her essays…….

World is suddener than we fancy it.                                                                                                                                         World is crazier and more of it than we think,
Incorrigibly plural.

This is from his poem, “Snow“. She only quoted the last two words “incorrigibly plural”……..one of those phrases which I read and which suddenly stops me from reading any further. What amazing phrase! I know how the unpredictability of life can be confusing, even scary, but I love how life can’t be pinned down by a single formula. I love how life constantly surprises us……way beyond what we could expect or imagine. And I love the complexity of world…….there’s always more to discover, always more to explore.

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