Won’t get well: Trying to understand medical non-compliance

How many unfinished prescriptions are left in your medicine box?

How many unfinished prescriptions are left in your medicine box?

This post was born out of discussions with my doctor friends, who frequently struggle with “revolving door” patients. The kind of people you discharge knowing you’ll be seeing them in a few weeks, maybe even a few days. Individuals who  grudgingly accept treatment, as though intent on remaining sick. Those who fail to follow medical advice, despite the pain and risks they then live with. Questions arise as to whether we should treat these patients at all, whether the resources are justified when they seem determined not to look after their own health.

“Non-compliance” has a very punitive ring to it. We comply with authorities, with court orders and sanctions. It suggests the existence of an external control and an absence of choice. The somewhat softer “non-adherence” is perhaps something all of us can relate to. Which amongst us have not been entirely adherent to medical advice? Perhaps we failed to complete a course of medicine, drank whilst on antibiotics or missed a few doses. This kind of non-compliance is one of the highest rated frustrations for doctors, but is very common.

Who is more likely to be non-compliant?

In a review of 102 papers, Jin, Sklar, Oh and Li (2008) found that those who do not comply are more likely to be male, younger, single, to have a lower level of education. Those who have a cognitive impairment (e.g. dementia), a mood disorder or use substances were also found to be more likely to be non-compliant. The complexity of treatment regime, level of medical knowledge, quality of relationship with the prescriber, and stigma attached with the treatment were also highlighted. However, it may not always be as clear “why” an individual is non-compliant, and attention needs to be given to the paradoxical nature of the behaviour.

Beliefs impacting on compliance

Research suggests that cognitive factors may lie behind this “everyday” non-compliance: faulty and inaccurate beliefs that guide behaviour. Patients may believe that the treatment will be ineffective or there will be minimal consequences to non-adherence. They may believe that they are not “truly” ill or that the treatment will impact them negatively. They may believe that the disease is uncontrollable or have religious beliefs regarding illness, or that an alternative method that will help them more.

Readiness to change

stages-change

Thinking of the “stages of change” model, many patients may still be at the ‘pre-contemplation’ stage in relation to changing their behaviour. They will need support, education and counselling to progress to a point where they feel capable of change. When medical emergency forces a patient to receive medical treatment, they may still not be ready to engage in change, despite professionals escalating the situation on their behalf.

A good relationship with a professional will be needed to open up a dialogue in which it may become apparent that patients hold these beliefs. In many cases education may be enough to shift the belief, but this will need to be provided in a respectful manner so it can be well received. Motivational interviewing techniques have been used successfully to help a patient to identify discrepancies between their behaviour and their goals.

But what of people with more “severe” forms of non-compliance? Those who seem to actively avoid treatment and seem to exacerbate their condition?

Continue reading

Advertisements

Doctors stole my baby! The curious phenomena of the phantom pregnancy

A7GEAW_2378638b

This morning newspapers carried the story of a young Brazilian woman who is taking legal action against a hospital, claiming they have stolen her baby, or covered up its death. She entered the hospital visibly pregnant, complaining of abdominal pain and vaginal bleeding. She was anaesthetised for an emergency c-section, but woke up without a baby. The hospital are claiming that this was a case of ‘phantom pregnancy‘.

V.S. Ramachandran describes the bizarre phenomena of pseudocyesis or ‘hysterical pregnancy’ in his book ‘Phantoms In The Brain‘. The body develops many of the physical signs of pregnancy, accompanied by a strong belief that the individual truly is pregnant. Individuals may experience swelling in the abdomen, changes in menstruation, depositing of fat around the belly and lactation, amongst other symptoms. Often it will only take an in-depth examination from a medical professional to discern that a foetus is not present.

In some mammals such as cats and dogs, pseudo-pregnancy is more common and has been linked to the continued presence of the corpus luteum, which causes the signs of pregnancy. In humans the condition is believed to be psychological in origin and to relate to an overwhelming desire to have a child. Pseudocyesis is however, rare today. In the late 1700s, one in 200 pregnancies were believed to be ‘phantoms’. Now the incidence is closer to one in 10,000. This has been linked to changes over time in the pressures on women to conceive and give offspring, as well as advances in scanning techniques. In the modern age, an ultrasound can easy confirm a pregnancy. In previous centuries women might receive little education on pregnancy and childbirth and would have had little way of confirming a pregnancy other than going on outward physical signs. Many would have had little contact with a midwife prior to the birth. Indeed, often presenting the women with the ‘evidence’ of her (un)pregnancy is enough to resolve the condition. The pregnancy is not staged by the woman (though many people have lied about a pregnancy for secondary gain, few are actually capable of manipulating their own hormonal levels or altering the position of their spine). Men too have been seen to develop some phsyical symptoms in a ‘sympathic pregnancy’ (otherwise known as Couvade Syndrome), although this tends not to be accompanied with the same strong belief of pregnancy.

Pseudocyesis appears quite strange, although it has some similarities with the better known ‘placebo effect’ (when individuals’ health improves when they believe they are receiving treatment, regardless of whether the treatment is active), offers a fascinating insight into the way our minds can control our bodies, seemingly beyond our conscious awareness.

Layane Santos displays her visibly swollen belly

So what is happening in the case of Layane Santos? If, as she states, she had previously had an ultrasound that confirmed the birth, this would be convincing evidence that she really was pregnant.The hospital claims to have run tests before the ‘delivery’ that showed she was not carrying a baby. It is therefore a little questionable as to why they are not revealing these results, or why indeed they chose to anaesthetise Santos at all. If she was indeed not pregnant, the evidence of such should be straight-forward.

Undoubtedly the couple very much wanted a child and were quite invested in the pregnancy (as many couples are). A Brazilian newspaper claims that they had “already named their daughter Sofia, moved to a bigger house and had spent $3000 on clothes and furniture for their first child“. In pseudocyesis, although the pregnancy is not ‘real’, the news that one will not have a baby is obviously very distressing and there may be disbelief, given the many physical symptoms, that they were not pregnant.

It seems unlikely that a hospital would ‘steal’ a child, but while the hospital withhold details of their tests, it cannot be confirmed that Ms Santos was not pregnant. I shall be watching this case with interest…

(Images from GoogleImages)

Layane Santos

Wellcome Image Awards

I’m a little behind on this one, but thought I’d like to mention it anyway. A couple of weeks ago the winners of the Wellcome Image Awards were announced. The prize celebrates images relating to medical science, the domain funded by the Wellcome Trust.

The overall winning image by Robert Lublow at UCL’s Institute of Neurology, is a close-up photograph of the brain of a patient with epilepsy, during an intracranial electrode recording procedure. It’s hard to explain, but there’s something I find very powerful about this image. It looks like a map, the blood vessels like rivers and roads tracing across the surface of the cortex. It’s so bright and colourful, the vibrant red of the blood and the pink of the ‘grey’ matter. I’ve seen so many photos and pictures of brains, and I’ve seen brains up close in dissection classes, but they’ve never looked like this. What makes this photograph different is that it shows the brain alive. There’s blood pumping through it, the tissue is active, this really is a living organ inside someone’s skull. This is a site that I, and most people, aren’t privy to. We see the solid greyness of a preserved brain, and the gradients of an MRI scan, but we don’t actually see the brain, truly as it is, in action. This photo shows us what usually only neurosurgeons would see. And inside there, in all those little intricacies, is the very essence of a person.

N0036750 Intracranial recording for epilepsy

Brains @ The Wellcome Collection

I visited London’s Wellcome Collection for the first time a couple of months ago, and I think it’s already one of my favourite museums. It’s a wonderful conglomeration of two things I love: science and art. It’s a strange and eye-opening place, not too big, but perfectly contained.

Henry Wellcome, innovative pharmacist and businessman, was also a very keen (and rather obsessive) collector of all things medically-related. The collection housed in the museum is a cornucopia of historical artefacts, implements, paintings, photographs and sketches and all number of delightful curiosities. Here you’ll find shrunken heads, chastity belts, paintings of individuals with deformity and Chinese medicine dolls. I found it utterly fascinating.

Often seen as opposites, the second main exhibition  is a collaboration between the worlds of science and art. It houses a collections of pieces of art inspired by science, and science at its most artistic. Exhibits offer artistic interpretations on topics such as malaria, obesity and the genome project, and items such as a large glass sculpture of a virus, show the natural world in its beautiful intricacy.

L0070358_full

Box-model of the brain, used for teaching in mid-20th century

With this in mind, I’m very excited that the upcoming exhibition is on one of my favourite topics, Brains! The Wellcome say ‘Our major new free exhibition seeks to explore what humans have done to brains in the name of medical intervention, scientific enquiry, cultural meaning and technological change. Featuring over 150 artefacts including real brains, artworks, manuscripts, artefacts, videos  and photography, ‘Brains’ follows the long quest to manipulate and decipher the most unique and mysterious of human organs, whose secrets continue to confound and inspire.’

I shall be all over this. I expect there will be some items like kits for trepanning, old fashioned brain-maps and a few obligatory brains-in-jars. Quite excited. It’s on from the 29th March – 17th June, I shall report back when I’ve actually gone. In the meantime, they have this nifty game on the website where you can grow your own neuron cell (and compete against a mean rival neuron who keeps getting in your way). It’s pretty distracting.

Louboutin Cures

Ok, maybe only a shoe addiction…

Famous for their much-coveted red-soled shoes, Christian Louboutin are celebrating their 20th anniversary. To mark the occasion, they’ve released a special ‘capsule’ collection. As a lover of all things medical, my favourite piece has got to be their handbags shaped like shiny over-sized pills. Suspended on gold chains, the bags come in white&blue or red&black cominations, stamped ‘500mg’ and the Louboutin signature.  Spotted on Katy Perry at Paris Fashion week, it was a perfect match for her cosmic-blue hair.

katy-perry-viktor-rolf-cl-7 pill-shaped-purse-by-christian-louboutin-o

Speak Your Mind – Al Shep’s Typographical Art

Today’s unexpected find is Manchester-based artist Al Shep. His work is type based and often involves words and phrases stensilled onto the back of cardboard packaging. His messages can be found around the town on stickers, posters, spray paint and stensils cut into wood, dirt and even ice.

Mental health seems to be a big focus of his art. Phrases from diagnostic criteria and patient-information leaflets are presented out of context, seeming to ridicule their reductionism and detachment. Other pieces use bold, simple phrases that seem to capture the experience of the sufferer so acutely that you want to hold up his signs and say ‘that’s it, exactly’.

As with many street artists, he’s rather illusive and I haven’t been able to find much in terms of information on him. Find him on flickr here.