Dementia

On wanting to die

It’s an avalanche of blogging at the moment, rather. First I wrote this on the assumption that people with mental health problems have no right to choose to die and then my colleague and Twitter chum Huw (@Huwtube) collected some of his thoughts on the topic. Between this and discovering, in the past ten days, that three of my former patients have died recently, it’s all been rather death-heavy.

Lots of the people I work with want to die. Most of them are old; many have dementia. Some are housebound, or bedbound. They may no longer be continent. Lots have carers who wash and dress and feed them. Some are going blind. Good physical health can be a thing of the past. Frailty and infirmity are what they see coming towards them. Many are terrified.

I often ask the question ‘do you ever think about harming yourself?’ It’s rare my patients say ‘yes’, but many say ‘I want to die but I don’t know how to do it’. I’ve heard that statement more times than I can count but it’s always been something that’s puzzled me – so many of the people I have worked with have known exactly how to kill themselves that the naivety of not knowing almost brings me back to another reality; one which is not so skewed by the desire to not be alive anymore.

When I heard about my patients having died – all from natural causes – I was sad, but that was primarily because I knew their families and I knew that watching their loved one suffer had sometimes been a torment, particularly towards the end. A part of me also felt that at least the patient was no longer in a state they didn’t want to be in. I didn’t wish them dead but I certainly felt a sense of something – I can’t name it – that it was over. ‘It’. I don’t even know what I mean when I say ‘it’. ‘Illness’ seems a silly word; ‘life’ seems cruel’; ‘suffering’ seems pompous.

Perhaps this is why it is so hard to talk about this stuff. No matter how articulate you think you are, how verbose – and I am certainly verbose – the language can elude you. I can’t always describe what I think or how I feel, and that means I might be clumsy or say something ill-judged and then I worry dreadfully that I’ll be misconstrued. As I acknowledged in the post for Discursive, I worried a great deal how people would construe what I was trying to say. 1100 words is nothing on a topic of this magnitude and there is plenty to think about and plenty that needs to change (I freely admit that the comments on that piece are far superior to my original post and they are very much worth your time). What I said, essentially, was that people who find life to be unendurable have a right to an opinion on whether they should continue to live or die and that mental health professionals cannot simply tell them they have no right to die. Conversely, people in distress who express a wish to die should be given the emotional and practical help they need. Ideally, they’d get it long before it gets to that point, but that’s a blog for another day.

Life can be unendurable for many reasons. Classically, we see it through the ’emotional pain’ perspective, but, thinking sociopolitically, there is more to it. The assault on welfare and social housing and the cuts to services have served to make life unendurable for people who may well have been coping before 2010. People are dying and the State is responsible for their deaths. I understand that people who are in a desperate state and who see no way out might want to end their lives. I don’t consider that ‘insane’ in any way; I can see perfectly well that it may be a rational solution to a problem which appears to have few alternative solutions. The difficulty – or one of them, I suppose – is that surely a health professional who supports that wish to die becomes unwittingly part of some kind of social cleansing? But equally, unless you can actually change that person’s circumstances and improve their quality of life, is it not unethical to consign them to an indeterminate period of despair?

I don’t know how you decide if life is worth living or not; not really. And I also don’t know how you can ever come to an conclusion about whether someone else’s life is worth living. I tried having this conversation yesterday with someone and my suspicion is that she was slightly horrified that I – a health professional and a Muslim to boot – could even begin to talk about supporting people’s right to die. I don’t know what impact my being Muslim has on my view of the situation but I’ve always tried to be the kind of clinician whose work is about her patients rather than herself. I try to stick to ethics and my principles and I cannot state where they came from any more categorically than I can state where my desire to do this work came from. The point, dear reader, is that it is not about us as professionals. It is about our patients (the fact I am writing this as a professional has not escaped me). That doesn’t mean we cut our professional selves off from our personal selves, but it does mean we need to get over ourselves and think about what our patients are telling us and what they need more than what we need. Being a psychologist is not about meeting your own needs. It’s about meeting the needs of your patients. It’s obviously easy to type and harder to do, but there it is.

I don’t know how I square that last statement with my earlier statement on being ethical. But then, this post is littered with ‘I don’t know’ statements. And maybe that’s just how it is – we don’t know. We don’t know when someone’s life is worth living and when it is not, and maybe nor does the person who wants to die. And I don’t mean that to patronise; I mean that the future is unknowable and therefore everything we do is based on our best guesswork. In my job there’s a lot I don’t know. I don’t know if my therapeutic approach will work for you. I don’t know if I can help you. I don’t know if I can give you what you need. And sometimes I don’t know whether life or death is the better option. I don’t like to get things wrong, not when it comes to my patients. I want to help you first time round. I want to give you what you need. And so when it comes to life and death I want to get it right. But there are no guarantees. And that’s why, when you ask what I think, I can’t give you an answer. I simply don’t know.

Advertisements

On paying doctors to diagnose dementia

Being paid by outcomes is no new thing in the NHS. In physical health, good outcomes are relatively easy to distinguish. In mental health, it’s more complex. Often, outcomes look at symptoms or daily functioning (often defined as ability to work, travel alone, etc), but these are blunt instruments for complex and often nuanced problems. It’s a fundamental truth that not all health is quantifiable and that not al treatment is quantifiable. It is perhaps as great a truth that the people who decide how health services should be commissioned and run don’t really get that.

Thus it was that I read with horror that GPs are to be paid up to £200 to diagnose dementia. There will be no ‘second opinion’ in this case – no one will verify the diagnosis, but there it will sit, on your medical records, colouring the way you are treated and interacted with for the rest of your life. The government says that this will increase the number of diagnoses of dementia made, which it doubtless will, if it will earn the diagnosers a small fortune. But a diagnosis which is incorrect is worse than useless; it is actively harmful.

Not that I am accusing all GPs of being mercenary. Far from it. Most GPs are dedicated to their patients and, I am pretty sure, have an ethical code which would stop them diagnosing for the sake of it. But some are less scrupulous. I am currently working in learning disabilities. People with learning disabilities tend to have poorer health than the rest of us and, when they become ill, they are more likely to die. Partly, this is because people with an LD often lack the knowledge most people have about the ways their bodies should look or feel and partly it is because they may have trouble communicating it. As such, tumours, abscesses and ulcers can grow and grow without anyone knowing until they become fatal. GPs are paid £100 to do an annual health check for someone with a learning disability – diabetes, breast, prostate and thyroid checks are all par for the course. Yesterday I was told that there are some GPs who have been found to pocket the £100 whilst palming off the health checks to unqualified care home staff. The parallels are clear. The acquisition of money can do terrible things to our sense of professionalism and it takes quite something to resist the lure of it..

But there’s a more fundamental point here. GPs have a breadth of skills and knowledge, but the clue is in the title, they are ‘general’ practitioners. They tend not to diagnose severe and enduring conditions; they, rightly, send you to a specialist. During training, I have spent six months working with older people, diagnosing dementia. I spent six months working in a specialist neuropsychology placement assessing people with stroke, multiple sclerosis, Huntingdon’s chorea, epilepsy, Parkinson’s and so on. Typically, an assessment, a thorough, robust, clinically-defensible assessment would take some four or five hours. With older people, it often takes longer because they fatigue more easily. Writing a report, up to nine pages long, takes hours if it is done well. To be sure, with practice, you can do it more quickly, but there is no substitute for a detailed clinical interview and a well-selected test battery. Neuropsychological assessments show what brain scans can miss and virtually always add real clinical value. That value is then translated into help for the person. I have written reports detailing a dozen recommendations to help the person manage better. It’s time-consuming, but it’s my job and it’s the right way to do it. The wrong way is to have a ten-minute appointment with your GP, be asked some crude questions to estimate your cognitive functioning and receive a diagnosis on the spot.

But, you might say, if the person gets a diagnosis, they will get treatment. Well, perhaps. But if the diagnosis is incorrect I question the point of treatment. And, unfortunately, they blunt truth is that we can’t do a lot for many dementias. There are tablets that work for some people, but they are only prescribed for very specific types of dementia, of which there are many. Thousands of people have dementias which cannot be treated by medication. There are ways to support such people, but a diagnosis is not always helpful and not everyone who has an assessment wants to know the outcome of it. Knowing can affect your ability to drive, your perceived ability to work and retain control of your legal and financial matters. It can make you pitied by your family and friends. It can make you terrified of the future. It cannot be easily undone and the effects cannot be avoided. There is no magic cure and, truth be told, having an assessment, even a good one, is something that people often think about very carefully. Now imagine all those consequences based on a poor assessment and a diagnosis of dubious nature, made in the context of £200 in someone’s back pocket, and think whether you would want your parent to be in that position.

Cocoa: Stopping dementia in its tracks (or possibly not)

This morning I heard of a study which had found that drinking hot chocolate regularly could stop older people from developing dementia. The study, run by a team from Harvard, suggests that cocoa improved blood flow to the brain, resulting in better scores on tasks designed to assess memory. I duly had a look at the paper, published in Neurology.

The study was designed to investigate the effect of cocoa on neural coupling, which refers to the relationship between neural activity and cerebral blood flow. Sixty people were included in the study: half were given two cups of high-flavanol (an antioxidant) cocoa each day and the rest were given low-flavanol cocoa. A number of cognitive assessments were carried out, many of which are also used by clinicians in cases where dementia is suspected. The Mini Mental State Examination (MMSE), for example, assesses cognitive functioning in a range of domains, as does the Trail-Making Test. After 30 days of prescribed cocoa-drinking, the cognitive tests were repeated and a significant improvement was observed on one of them (the Trail-Making Test B). There were no differences reported between the groups, i.e. Trails B scores improved regardless of the quantity of flavanol ingested and no other significant improvements were observed in either group.

Like all studies, this one has its limitations. Whilst it’s a positive that the authors split the sample in half and gave them different quantities of flavanol, it’s usually the case that you have an ‘intervention’ group and a ‘control’ group. In this case, you would have had those who took cocoa for 30 days, perhaps splitting them to take different quantities of flavanol, but you would also have had a similar group – matched for age, gender and health – who took no cocoa. They would be your ‘controls’. That way, you can compare scores across all these individuals at baseline and the end of treatment (in this case end of cocoa) and compare them. The advantage of doing this is that you can see if the improvement was associated with the cocoa or if it was simply a spontaneous improvement which was also observed in the control group.

In this study, there was no control group, so it’s difficult to presume that the observed improvement was due to taking cocoa. In any case, an improvement on one test of cognitive function may be interesting, but it won’t necessarily have any real-world impact. The Trail-Making Test assesses a range of functions, but the test is the sort of thing we use clinically, it’s not something you would have much cause to do in daily life. It’s a bit like the Brain Training games which teach you to remember long lists of words – your skills in that domain may improve, but realistically that’s only useful if you want to be able to recite your shopping list verbatim at any moment. I’d be more excited if the improvement had been seen on the MMSE since that is a much more global test of functioning. As it is, this was a small study which didn’t have a control condition and that seriously limits the extent to which we can draw conclusions from the findings. If you’re considering stocking up on the Green and Blacks simply to stave off dementia, I’d think again.