A Covenant and not a Contract

It has been an intense winter and in the three-way tussle between doing the day job, staying healthy and blogging it was always the writing that would have to give. It’s good to be back, though, and with renewed energy – although how long that lasts may well depend on which Government is elected on May 7th, and what they decide to throw at General Practice over the next five years.

It’s good to start afresh with a positive blog – one, oddly enough, inspired by the Care Quality Commission (CQC). I’m not the greatest fan of inspections, nor have I been impressed by the approach taken by the CQC as it has moved into doctors’ surgeries, but there are times when doing something you don’t want to do bears unexpected fruit.

One of the requirements of the CQC is that GP practices should have a ‘Vision and Values Statement’ that all staff should be familiar with. Knowing that we could be quizzed on such a statement at any time during an inspection, and that it would be hard to give the right answers if we didn’t actually have one, we set about to rectify the situation.

I confess to having an attitude more becoming of a teenager told to tidy their bedroom; just as an adolescent is convinced that they know where everything is in their own private world and so what is the point of tidying just to please Mum and Dad, so I knew that we understood our values and wondered what good could possibly come of writing them down just to tick a box.

It all felt very corporate. We looked for examples from others so that we would not have to reinvent the wheel, but they left us feeling flat and uninspired – they were other people’s values and not ours so they just didn’t resonate. It turns out, that when it comes to what really matters to you it’s best to invent your own wheel after all.

Then I remembered a line I’d heard about General Practice that had excited me and it was this: that the relationship between a GP and their patient should be a Covenant and not a Contract.

From that beginning, it suddenly became easy – and I am converted: writing down your values is worthwhile after all; it really did help to be able to look at them together as a practice and say ‘yes, this is what gets us up in the morning’; it’s helpful to remember them on a bad day when you’re tired and you’ve lost sight of what you believe in; it’s good to know that they are there as a yardstick for us to measure ourselves by – and one that we have put there on our own account rather than something that has been imposed upon us.

It feels scary to do so, but we would like our patients to know our values, and would like to know what they think of them. They are ideals – some would say idealistic – and we know we won’t always live up to them. What will happen when we fail? How will we feel if a patient throws them back in our face and tells us how badly we have let them down and how hypocritical we must be? It’s a risk we will have to take, but it feels a risk worth taking. More likely is that our patients will help us to shape these values further and improve them.

So, we have published them on our website, and we’d be interested in your thoughts.

The Greatest Taboo

Death and ageing are often described as the remaining taboos of our age – twin foes that we will do everything in our power to escape while knowing that they must surely come to us in the end. The current debate on assisted dying, however, leads me to believe there is an even greater taboo that troubles us in our modern, technological world – the question of suffering.

Suffering has defined much of human history, but it is only in the last hundred years that we have made significant inroads into finding ways to tackle it; with the advent of innovations such as vaccination; antibiotics; safe, anaesthetised surgery and effective pain relief, we have made great strides in the relief or prevention of suffering. In so reducing our regular encounters with this old enemy, however, I wonder if we are now less equipped to cope with it when we see it face to face.

Theologians, writers and poets all have a great deal to say about suffering. As Shelley put it:

Most wretched men
Are cradled into poetry by wrong:
They learn in suffering what they teach in song.

In her commentary on the assisted dying debate back in Iona Heath reminds us of the words of the French author Emmanuel Carrère who said:

As a rule…one must live lucidly, experiencing everything that happens, even suffering.

Not all are so romantic. Somerset Maugham, for instance laments:

It is not true that suffering ennobles the character; happiness does that sometimes, but suffering, for the most part, makes men petty and vindictive.

Whatever their conclusions, however, at least these writers have something to say about suffering – something that I fear we have lost the ability to do in modern healthcare. Everything we do in medicine is about the relief of suffering – and rightly so, we should be doing all we can to both prevent and relieve the suffering we encounter; but where we cannot achieve relief, we also seem to lack the narrative to help our patients come to terms with their situation. The inability to deal with the cause of suffering is seen as failure, often responded to with ever more desperate technological attempts to tackle the problem; another tablet that just might work, more chemotherapy, further surgery – the promise of relief preventing any real admission that medicine has run out of answers. As Heath puts it, medicine all too often offers ‘a technological solution to an existential problem.’

That there are calls for assisted dying to be legalised is certainly evidence that the fear of death can be outweighed by the greater fear of suffering. Some argue that palliative medicine is so developed that all suffering in terminal care can be relieved, but while such care can indeed be excellent, this seems arrogant and insulting to those who continue to suffer despite doctors’ best efforts. Not all suffering is related to bodily symptoms – mental anguish and fear can be just as hard to bear, and medicine rarely has the answers to the less physiological burdens we have to carry.

As doctors we have a rich language to call on for the relief of suffering: diagnose; treat; control; palliate; cure and so on, but where is our vocabulary for the suffering which we cannot resolve? Words like endure and persevere are not medical words, and you will rarely hear doctors use them – to tell someone they must simply put up with their distress seems uncaring, and leaves the doctor’s inadequacies too exposed; we would rather skirt around the issue and talk about more treatment. Is it any wonder, then, that some people ask for the ultimate treatment for the relief of suffering – assisted dying?

To hear the plight of someone who wants to choose assisted dying and not to be moved is to have a heart of stone; it is entirely understandable. Yet I have also seen the very best of what it means to be human arise directly from the pit of suffering: remarkable courage; relationships restored as years of unresolved bitterness are finally forced to a head, leading to resolution and forgiveness; great acts of love, sacrifice and kindness. Not all is rosy, of course, and at times illness will only unearth the mire hidden just below the surface, but this is the stuff of life with both its joys and its messiness.

I would like to help my patient’s journey through the suffering they have to endure rather than give them drugs to find a permanent way of escaping it. Do I have the right to tell my patients how much they should suffer? Of course not. Have I suffered enough in my own life to even know what I am talking about? No, I have witnessed a great deal of suffering, but personally only been subject to it in small measures thus far, if someone says therefore I have not earned the right to talk about this then I will not quarrel with them. Do I think suffering is ever justifiable on the grounds that good will come out of it? Certainly not, and I will continue to spend my days trying to relieve it. But I am constantly surprised by the great beauty that can arise from suffering, and I can’t help thinking that if assisted dying becomes legal and routine in this country then we will lose some of our humanity in the process.

I Lost my Mother Years Ago

‘I lost my mother years ago.’ It’s an odd thing to say about someone who is still living and breathing, but when faced with the advanced stages of dementia it can be the reality people have to live with. There is a point in the journey when communication becomes nearly impossible, the affected person stops recognising even their closest family and those who care about them really feel that the person they have loved is no longer there. Such a conclusion is understandable, but it raises all sorts of questions about the meaning of personhood in the 21st century.

The feeling of having lost someone is certainly not an uncommon experience. Ian Botham was so overwhelmed by it that he took the difficult decision to avoid visiting his father in the last 6 months of his father’s illness with dementia – fearing that his positive memories would be distorted by seeing his Dad in his final days. I can’t possibly judge Sir Ian for this decision, but I am deeply sad for him and can’t help wondering if his memories won’t be distorted anyway; our imagination has a disturbing habit of filling in the gaps in our experience.

It is interesting to me that we rarely hear someone talk of losing a relative to cancer until after their actual death. While cancer is an equally devastating illness, there is somehow something more acceptable about dying from cancer than dying from dementia – we still see the person inside the body no matter how ravaged it may be, as long as the mind is still working; in fact, even when the mind finally succumbs to cancer we seem less affected by this because it started in the body. The way Western culture places the intellect above all else must have a significant part to play here – I’m not sure the same would be true for all cultures and it would be interesting to know how dementia is treated in cultures that differ significantly in this area. Maybe stigma and fear have a large part to play also – I know that there was a time when dying from cancer was far from acceptable, when talking about cancer was taboo and a diagnosis somehow a cause of shame; this was before my time as a doctor and is so far from my experience that I can hardly imagine it, but there are echoes of the same in dementia, and I suspect these barriers will prove even harder to break down.

When have we ever heard the parents of a highly disabled child talk about losing their child while they are still alive? Through the link our practice has with a children’s hospice I talk frequently with parents whose children are no more able to communicate with their family than would a person in the late stages of dementia. There is grief and sorrow and pain for sure, but never a sense that their child is no longer a person or that only an empty shell of a body has been left alive. Of course, children are innately easy to love, but I don’t think it is a lack of love for the elderly that is at work here, or simple ageism; there seems to be something uniquely challenging about losing what we once had when it comes to our intellect.

The issue raises important questions: who am I, when I have forgotten who I am? In what way can I still be a father if I have forgotten that I have children? The cartoonist Tony Husband had to face all these questions as he watched his father die from dementia, an episode of his life that he recorded in cartoon form and which was published in full by The Daily mail. The cartoons are poignant, but not sentimental, and although the headline writers talk about dementia ‘stealing away his father’, Husband himself never describes things in this way. He simply tells the story of what happened, with both gentle humour and deep sorrow, leading to one moment right at the end of his father’s life, after any sense of meaningful communication with his Dad appeared to have gone forever, when out of the blue and in a rare moment of wakefulness, his Dad said to him: ‘Take care, son.’

Perhaps a mother can still be a mother simply because her son knows that he is her son. If our personhood is defined by whom we have loved in our lives (and there are far worse ways to ascribe meaning to our existence), then maybe it is sufficient that we are defined by those who love us, even when we have lost the capacity to show love in return. This love might even find new ways of expression: a father with dementia might be willing to hold his daughter’s hand, having previously been too inhibited to do so; a mother might come alive when the piano starts playing and sing with her children for the first time in many years; bitter memories of past wrongs may be lost alongside those memories we would rather keep, allowing the restoration of relationships as barriers are removed.

In a society that defines its members primarily on the basis of what work they do, how successful they are and how much money they earn, we should not be surprised that we lack the cultural aptitude to cope with dementia. However, if we can redefine what we mean by personhood in a way that is fully inclusive of a person with dementia, we may be more equipped to deal with this illness and perhaps all find a better way to live along the way.

Charging for Healthcare – Closing the Doors on the NHS

I initially wrote this post for Pulse Magazine, with an audience of GPs in mind, so please forgive the fact that it sometimes slips into jargon. The debate on healthcare for migrants is not something just for GPs to consider, however, as it affects us all. How we care for those who arrive in this country from abroad says a great deal about our nation, and we should all have a voice in the discussion. Here is the post:

I don’t know about you, but I’m swatting up on public health and maternity care – it might seem an odd combination, but it looks like we’re going to need it. The Department of Health – renowned for its undying faith in the virtues of general practice – has decreed that only primary care will remain free at the point of delivery for non-EU migrants, while A&E and secondary care will be withdrawn behind a solid pay wall. This is seen by some as a U-turn, bowing to concerns that charging for all medical care could lead to serious threats to public health, such as outbreaks of TB – as has already happened in Spain.

The Department of Health has reassured the public by stating that, in keeping GP consultations free, everyone will have ‘initial access to prevent risks to public health such as HIV, TB and sexually transmitted infection.’ That’s all right then. There’s no statement, of course, about what is meant to happen after this initial access. When I’ve made my initial assessment that the impoverished patient sitting before me could well have TB, can I order a chest x-ray before I obtain their credit card details? And when the report of a cavitating apical lesion arrives on the fax machine, should I brush up on treatment regimes for mycobacterial disease when my patient informs me that he can’t afford hospital care? Perhaps I should learn bronchoscopy and start offering it as a minor op? Oh, but they plan to charge for that too, don’t they? Oh well, it’s not like TB is making a bit of a come-back or anything.

Then there’s maternity. Apparently no-one will be turned away, but they will be charged. How does that work then for a pregnant woman with no money? Cross your legs until you’ve saved enough? Visit Wonga and ask for a labour day loan? Or try a home birth with a cost-free GP and hope you find one that’s been around long enough to remember how to do it? Even if the moral argument doesn’t grab you, it makes poor economic sense – obstetric catastrophes are very expensive as well as tragic.

The thinking behind this, of course, is that the NHS is broken (it isn’t), and so-called ‘health tourists’ are the cause (they aren’t). The real reason, however, is more ideological. Read the DH document in detail and you find a recurring argument that goes something like this:

We’ve considered Situation X; we recognise there are moral and ethical difficulties, but we are going to charge anyway because the Hard-Working-British-Tax-Payer can’t put up with the idea that someone, somewhere might be getting a free ride.

The document makes a clear distinction between medical tourists (those who choose to travel for better health care, but are willing and able to pay for it) and health tourists (those who have health needs but cannot afford to pay for it). They want to encourage the former (the rich), while denying healthcare to the latter (the poor) – how very like this Government.

Now I’m not that keen on people being able to take cynical advantage of the NHS, but neither do I wish to see the most vulnerable in our society shut out of receiving healthcare; the new rules will apply to asylum-seekers – many of whom have genuinely fled from horror to the safety of our more tolerant society – and even people who have become victims of human trafficking may have to pay; the Government is still consulting about this, and is clearly stuck with how to identify the ‘worthy’ immigrant from the ‘unworthy’ one.

It will not be long before doctors will have to decide which is the higher calling on their professional duty. When faced with a sick patient – not quite an emergency, but not something to ignore – will it be Government policy that will prevail? Or the urgings of a hospital manager desperate to balance the books? Or should we insist that, whatever the political will we are up against, our duties are laid out by the foundations of our profession as laid down in the World Medical Profession declaration of Geneva:

I WILL NOT PERMIT considerations of age, disease or disability, creed, ethnic origin, gender, nationality, political affiliation, race, sexual orientation, social standing or any other factor to intervene between my duty and my patient.

Or our own GMC:

MAKE THE CARE OF YOUR PATIENT YOUR FIRST CONCERN; Protect and promote the health of patients and the public; Respect patients’ right to confidentiality; Never discriminate unfairly against patients or colleagues.

Or the United Nations Human Rights Treaty:

States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, including prisoners or detainees, minorities, asylum seekers and illegal immigrants, to preventive, curative and palliative health services; abstaining from enforcing discriminatory practices as a State policy.

When these charges start to bite doctors will be faced with dilemmas on a daily basis. Do we do as we are told, and turn away patients whom we know we can help on the basis of their nationality, or do we consider something more radical? When Iona Heath reflected on the above statements recently on Twitter she had no doubt which was the right way for the profession to act, and recommended civil disobedience. Are we brave enough to follow her lead?

Call Me Old-Fashioned

Last week I wrote an article for The Guardian concerning the new Channel 4 programme Health Freaks. My concern related to the fact that three GPs could be at the centre of a TV programme that used what I consider to be the very derogatory term ‘freaks’ in its title. For me, the word has been chosen because of its eye-catching quality, and the implied promise of entertainment based on voyeurism. I was intrigued by the comments the article generated, however, as they were generally unsympathetic to my views.

On the whole those who made a comment thought I was a bit over-the-top in writing the piece, and I admit that it was certainly strongly worded. There were two types of argument supporting this. The first was that I was misjudging the use of the word ‘freak’ and that it was not intended in a negative fashion, and the second that I was far too easily offended, guilty of over-cooked political correctness and generally needed to find a sense of humour.

The first arguments were well put, and I can certainly see that one use of the term ‘health freak’ is to describe someone who is particularly health-conscious, along the lines of being a fitness fanatic. Had the programme been about that sort of person then I would certainly agree with this point, but given the fact that the first programme focussed on someone who thought it benefitted his health to drink his own urine, I think the producers had something rather different in mind when they chose the word.

For the second argument I think the readers missed the point of what I was trying to say (and here I must look back at my writing and conclude that I could have said it better). The issue I have is not that this is the most offensive programme on television, nor that the word ‘freak’ is the worst term we shall hear over our airwaves – not by a distance. My problem with the programme is that the presenters are doctors, behaving in their capacity as doctors, and so the professional relationship that stands between doctors and patients still applies to the programme, even if it is now between the presenters and the members of the public on the show.

Call me old-fashioned, but I make no apology for expecting doctors to demonstrate the highest standards of professionalism at all times, and that respect for our patients is at the core of this. It is the damage done to this professional value that offends me about the name of this programme – since calling someone a freak in a voyeuristic sense of the word is hardly respectful. You could call it a plea for politeness and good manners – or are these words too boring to be permitted these days?

I do know that doctors are human beings, with human frailties. When it comes to always respecting our patients amongst the day-to-day stresses of a pressured day we will all fall short at times, me included, and our professional values are something to be aspired to, but will not always be achieved. I also know that our personal lives will be as messy as the lives of our patients, and that this should not usually have any bearing on our ability to do our job. However, making a TV programme is not the product of the heat of the moment or the end of the day when your compassion is at a low ebb. It is a fully considered judgement in the cold light of day, and so there is every opportunity to have the highest ethical standards when doctors make TV programmes.

A parallel setting to making a TV programme is when doctors engage in clinical research. Here too doctors consider proposals for working with patients, there is every opportunity to think things through in an ethical and considered way for the protection of patients, and every opportunity to get it wrong if the right values are not properly applied. For this reason every research proposal has to be considered by an ethics committee to assess its suitability – in terms of patient safety and respect for patients – before the public is exposed to our ideas. Doctors in the media have chosen to act in a public way, they should at least expect close public scrutiny of their actions.

I am not proposing that this programme should be banned (the principle of freedom of expression is far too important for that!) or even saying that I find it that offensive, but neither will I concede that it is naive to expect the highest standards from my profession, nor will I ignore the tendency for entertainment to trump values at every turn – at least not without a fight!

Organs by Passport

Some cases stick with you over the years. I remember a young woman who was left fighting for her life as a result of viral myocarditis. That someone previously fit and in the prime of her life could be struck down with such speed was a shock to this (then) fresh-faced young doctor; how her family coped with the awful truth that a heart transplant was the only way to save her, I will never know.

Imagine the same case happening in 2014. Intensive care, a young life, tubes, lines, drugs – 21st century medicine doing its best and running out of options. The difference is that the young woman in question is here on holiday, lives outside the EU, and Jeremy Hunt’s proposal to clamp down on ‘health tourism’ has found its way onto the statute books. The rules have changed for organ transplants – those without a right to remain in the country are excluded. A heart transplant is her only hope – but she is deemed unworthy, a health tourist who came to these shores to exploit our free health service. She should have known that she would develop viral myocarditis while on holiday and stayed in her own country where she had a right to care.

By a strange coincidence the young man who lies in the bed next to her is also here on holiday, and from the same country. Like his fellow country-woman, he had no idea of the tragedy that awaited him – he never saw the car coming, the resident-with-the-right-to-remain who was driving too fast. His family is in a side room, having that conversation – being told the news that his brain is dead and beyond any hope of repair, only his healthy, vibrant organs remain; would they like to consider organ donation?

 

This article was originally published in Pulse GP magazine (free registration required).

We Need to Talk About Conflicts of Interest

When I penned my previous post on the possible role of antibiotics in the treatment of back pain, I was unaware of one vital piece of information which, for me, changes everything: The doctors behind the research had a significant conflict of interest, which they had not declared when they submitted the article for publication.

This was first brought to my attention by Ben Riley, who keeps the Ferret Fancier blog, and the issue has also been covered by Margaret McCartney in the British Medical Journal. To summarise, three of the four authors are part of an organisation called MAST Medical, which states:

The latest research shows that back pain from Modic changes can be successfully treated with a prolonged course of antibiotic treatment.

To ensure that treatment is successful patients should consult a MAST certified doctor and/or therapist.

It is no surprise that to become ‘MAST certified’ requires attendance on a course run by MAST Medical, and payment of an inevitable fee. Apparently the authors did not think that this was a conflict of interest, because the website was launched three months after the article was published – a defence of their position which stretches the concept of conflicts of interest beyond breaking point.

The current system with regards to competing interests relies on self-declaration – this is a problem, since the editor of a journal cannot police every article that is submitted to them, or challenge authors concerning conflicts about which they are unaware.

Scientific method should make self-declaration a reliable system. A true scientist is more concerned about elucidating the truth than promoting their own interests; they will always be keen to see if their results can be reproduced by other researchers before declaring them to be proven; a true scientist may still have a conflict of interest – but they will positively want to declare it as they know that it could bias their interpretation.

Unfortunately, not everyone in the medical world behaves as a true scientist. This group, far from being concerned that they could be biased, have chosen to defend what is an obvious financial interest in the results of their trial. A cynic might guess that they delayed the launch of their website precisely so that they could get away without declaring it. As a medic I am very concerned that they are promoting antibiotics for the treatment of back pain before their results have been replicated elsewhere.

Sometimes declarations may fail to be made for very obvious reasons of personal gain – we only need to remember Andrew Wakefield and the MMR scandal to realise just how serious this can be – while at other times it may be due to laziness or thoughtlessness on behalf of the authors. An example of this more innocuous, but nevertheless important, neglect to make a proper declaration occurred when I wrote to the British Medical Journal, as part of a diverse group of people involved in healthcare, to raise concerns about the prospect of screening for dementia.

Our letter was initially published as a rapid response, where it triggered a reply from an eminent group of doctors who declared that they had no competing interests. The letter was subsequently published as an Observation article, and a further reply came from many of the same authors, several of whom decided on this occasion to declare interests, including financial support from pharmaceutical companies and appointments related to the field of dementia. These conflicts are not wrong in themselves, and do not invalidate their comments, but neither are they unimportant, nor did they arise in the intervening three-month period between the letters. What changed? A prick of the conscience? A word from the editor? Or perhaps the fact that the BMJ tightened its wording about conflicts of interests in January 2013 – between the two submissions.

Even a robust policy on this matter is insufficient, however. The BMJ has very clear guidance on what should be declared, but there is very little the editors can do when proper declarations are not made – with retraction of the article being their most draconian punishment. Retraction may have repercussions in the scientific community, but it is rarely reported on in mainstream media. The furore and excitement on the front pages of our national newspapers that surrounded the news that back pain could be treated with antibiotics is hardly likely to be repeated were the paper to be retracted by the journal at a later date, and so patients with back pain – and even their GPs – may never get to hear the full story.

The BMJ, along with many other leading journals, has encouraged the use of a uniform reporting system for competing interests, but this is by no means universal, and still lacks teeth. There needs to be a national debate on this important issue, and serious consequences for failing to declare significant competing interests. I don’t know what these should be – a ban on publication for a period of time, rather like a football player being suspended? A published apology? Even fines?

If this seems heavy-handed then we should remind ourselves of the consequences of misleading reasearch. Andrew Wakefield published his discredited research in The Lancet in 1998. It took 6 years before his financial conflicts of interests were unearthed by Brian Deer of The Sunday Times, but it was only in 2010, when he was struck off the medical register by the GMC, that the journal finally retracted the article. How much damage was done in the field of public health in the meantime – and is still being felt today as the outbreak of measles in Swansea is a stark reminder?

The danger with Wakefield is that we write him off as a dishonest maverick and fail to learn the lessons of a system that is broken and in need of a major rethink. We don’t need to wait for the next scandal before we talk about conflicts of interest – we need to do it now.