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?

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

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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

25 Years Later: A psychologist in the end of days

The Road.
What does it take for the human spirit to survive?

Recently I was asked to contribute to an article on where I saw myself and my profession in 25 years. This seemed a very daunting prospect. Though I’ve known for a long time that I wanted to train as a psychologist, for much of my educational and working life I’ve been very focused on my next steps, the next couple of years, just finishing this qualification, getting the next job. 25 years on feels almost unimaginable.

And there’s another issue. Some people say that in the coming years the NHS might not exist. I’ve got greater concerns. I can’t say I’m overly convinced that in 25 years the world, as we know it today, will really exist. Maybe I’ve watched too many zombie films and read a bit too much post-apocalyptic fiction, but you only have to turn on the news to hear daily about nuclear weapons, natural disasters and outbreaks of disease – things aren’t going well. And in 25 years… I fully expect that those of us that are left will be living in bunkers underground, following some kind of large-scale disaster that will wipe out the world’s cities and most of the population.

So our modern world is probably coming to an end. But I think I’ll be ok. I may be rather lacking in survival and combat skills, I’m not sure I could decapitate a Triffid or shoot a zombie, but I think as a psychologist (I’ll be qualified by then, not that it’ll matter a lot when universities, the BPS and the Healthcare Professionals Council cease to be) I’ll have some essential skills to help in rebuilding a shell-shocked world.

Professional Identity

Given everything that’s gone down, some of the niceties of the professional will probably be going out the window. I’ll be taking psychology out to the people as and when it’s needed, so I’ll be out of the clinic and getting a bit grubby. Smart trousers and sensible shoes will be out; I see myself as dressing somewhere between Tank Girl and a character from Fallout. Probably carrying some kind of weapon. There’ll be a bit of scrambling around. As a psychologist, I’m used to working in a team and taking on a variety of roles and being a spokesperson for mental health, personal development and identity. Now I’ll also be taking on roles as something of an educator, communicator, mediator and support worker.

Trauma, adaptation and survival

Living in a post-apocalyptic society, loss and death will be even more a part of our lives than they are now. I think I’ll be taking a key role in helping people in the community to come to terms with thing, accepting what has happened and adapting to a new way of life. There are likely to have been a lot of individuals who have had traumatic experiences and complicated bereavement and there will be a place for education and individual and group-based targeted interventions. People may have to live with some longer-term medical conditions (inc neurological conditions) and difficulties that there won’t be the resources to support, as there once was. We’ll all need to adapt to survive. This might sound like a lot of misery, but I think there’ll actually be a lot of room for post-traumatic growth and developing resilience. Many people will have shared difficult experiences and I think this could bring people closer together in supporting each other and overcoming adversity. Sometimes these kind of experiences can really shake people up, but also make you appreciate what you have and give you a refreshed perspective on life. In a world where money and material possessions hold less weight, I think people might actually find themselves happier living a simpler kind of life and taking up meaningful occupation in supporting the community. It might be useful to think about the level of depression (and PTSD-type symptoms) in communities around the world where death, disaster and poverty are common-place; people find a way to live through and grow despite extreme adversity. Viktor Frankl will be essential reading for everyone.

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Gifts for Brain Enthusiasts #2 (Birthday Edition)

Time for more neurologically-relevant items, given people seemed to like the first set so much. Recently it was my birthday. I’m struggled to come to terms with my transition to ‘adulthood’ and the realisation that I may have peaked, cognitively (indeed, I think I may actually have peaked around the time I sat my AS Levels aged 17, and been on a decline ever since).

Anyway, the occasion was made all the sweeter for some fantastic presents some lovely people got me. They seem to know what I like.

Asylum – The photographs of Christopher Payne

I’m something of an amateur urbex-er and I’ve always loved the old hospitals and asylums the best. This beautiful book is full of photos of america’s old mental hospitals. Beautiful and haunting, the buildings are often derelict, left to be recalimed by nature. These images seem at once strange and startling, they serve as a reminder of the dark places psychiatry has come from. Also includes a moving introduction from the wonderful Oliver Sacks.

Usborne’s See Inside Your Head

This book may technically be aimed at a younger audience, but I’m pretty thrilled with it. So many flaps to lift! Hours of entertainment here. If I ever get a job in paediatric neuro, I may take it into work.

Old anatomical print 

Isn’t this just exquisite? This wonderful print of the inferior view of the brain is about to gain a proud place on my wall. I’d say an old print makes a really good gift for any fans of the biological sciences, there are some really beautiful and intricate ones out there. One of my best friends found this for me at an antiques market, apparently it’s over 170 years old! It’s been cut from a book and is a bit crumbly on the edges. You can find similar items on ebay too.

Yes, I’m a massive nerd and I have a rather limited set of interests. Stay tuned for part three…

New guidelines for working therapeutically with Sexual & Gender Minority Clients

It’s already shaping up to be a good year for gender and sexual diversity in mental health. Last month the BPS (British Psychological Society, the organisation that oversees all practising psychologists in the UK) released the document ‘Guidelines and Literature Review for Psychologists Working Therapeutically with Sexual and Gender Minority Clients‘, which can be viewed for free online here. Although aimed particularly at those delivering therapy in sexuality/gender-focused settings, this advice has relevance for health professionals working in all areas. The report states its aims: ‘These guidelines have been developed in recognition of the importance of guiding and supporting applied psychologists around their work with sexual and gender minority clients in order to enable their inclusion in clinical practice at a high standard. They also aspire to engender better understanding of clients who may have suffered social exclusion and stigmatisation in order to reduce the possibility of this in the clinical arena.’ Attention is given to the harm caused in the past by perspectives in mental health about sexuality, which began to be put right the the removal of the diagnosis of homosexuality from the DSM in 1973. However, there is still a long way to go before services truly are inclusive and sensitive to the needs their clients, regardless of their sexual or gender identity. High levels of mental health problems have been reported in this client group, but they often experience difficulty accessing services, and may experience discrimination (unintentional or otherwise) from uninformed professionals.

It’s a large document that I’m still in the process of digesting, but so far I’ve been struck by how inclusive and wide-ranging it is. The report discusses ‘less-visible’ sexualities and identities, such as the spectrum that gender identities can take, forms of bisexuality and more fluid identities. Controversial and often-overlooked topics such as non-monogamous relationships/orientation, BDSM and sex-work are also tackled. It is worded sensitively, with effort to use quotes from service-users and use current phrases and slang, to bring professionals closer to the world inhabited by the clients they may meet.  The report encourages professionals to consider their own understandings of gender and sexuality, the context we live in and how this has shaped our own and others’ perceptions of.There is also a focus on doing away with myths that perpetuate throughout the system about certain identities, and a strong opposition to attempts to ‘cure’ a sexual or gender identity. It seems to be a really positive and well-researched report that would be beneficial to individuals working in a wide range of sectors, to inform and advise on a range of issues with working with this client group. If you’ve seen the document, what were your thoughts?