Understanding the Experience of Illness
Introduction
Understanding the pathology is just the beginning when it comes to understanding what an individual goes through when faced with a chronic illness. In the modern doctor, it is no longer acceptable to treat solely the illness but to approach the patient as a person. As a result, it is important to establish an understanding of how a patient communicates their narrative, as well as understanding non-medical factors which impact the life of the patient – such as social determinants and doctor-patient relationships. To achieve a greater understanding of the matter, we set out to interview Ms Green which we would go onto compare to other patients as well literature research.
Ms Green is in her early sixties and throughout her life has had atopic conditions, including eczema, asthma and severe allergies. Originally from London, she has lived in the Edinburgh area for 30 years. She currently lives in a two-bedroom house in the suburb of Clermiston with her husband and grown-up daughter. Her postcode puts her in the 6th decile of deprivation (1st being the most deprived) and a look around the area before the first interview we saw a mix of semi-detached and terraced houses with most residents owning cars.
Due to her condition, she has long given up any form of employment however she used to do part time work within the community, primarily with young people. Ms Green told us how she found it hard to go out anymore, due to a combination of her allergies and her other conditions. She primarily relies on her husband for support; and as a result, he has moved from full-time to part-time work. She in receipt of benefits which is crucial for living, something which became an interesting point during the interview.
Discussion of Interview
We began our interview by attempting to build a rapport with Ms Green by opening broad opening questions. Once we felt we felt we had established enough of a rapport we moved on to asking her to describe her conditions. We were immediately presented with a medical history which appeared at first to be in a random order and all over the place. It at first matched what could be called a ‘chaos’ narrative of illness. [1] This narrative type is common in chronic illnesses as patients often have their conditions from birth and often incurable. In a lot of cases this can lead to a feeling of hopelessness and the experience of being powerless. [1] This chaos narrative was shown by the way in which she jumped about in her timeline. She started with what was going on in her life at the present, sharing an anecdote about going out for lunch with friends and ending up in A&E due to a trace of a hidden allergen in her meal. She then flashed back to when she was growing up to when she was a teenager how she had felt incredibly insecure about her skin. She continued to discuss her early childhood traumas as well as her more recent ordeal when trying to claim benefits. These anecdotes, initially appeared to be in a random order but in fact on later consideration were in order, in order of importance. This is an important point when it comes to considering the importance of understanding what a narrative is and why the structure matters – as it is the way in which a patient communicates with their doctor so a good understanding of narratives will tell the clinician a lot more than just what the patient is saying. [1.1] Unlike any other a doctor can perform, listening to a patient will draw you right to the most important problems. As we found out with Ms Green, this is not always the most life-threatening condition or severe condition that matters the most. Ms Green told us that to her the worst of her three main conditions was her eczema, at first a bit of a shock to me as she had told us of multiple times where she had to be rushed to hospital with a severe anaphylaxis out of the blue. But when she went on to explain her reasoning, it began to make more sense. She pointed out that your skin is how the world perceives you and that having a condition which affects that changes your interactions with the environment you find yourself in. She went on to say that having eczema has made her insecure throughout life – something which has severely affected her quality of life on account of her struggling to begin relationships with people and a fear of getting intimate. Ms Green was not the only patient to have their social life impeded by a chronic illness. On discussion in a tutorial, it became apparent that this was very common. One patient, who suffered from Sjogren’s, was described as having a large social circle until her syndrome made it hard to get out and socialise. Again, this is another example of why listening and appreciating the importance of an illness narrative is so crucial as it allows a doctor to treat everything that is bothering a patient. This holistic approach often leads to greater outcomes for the patient and improves the doctor-patient relationship. [1.2]
In order to properly provide a holistic approach, a healthy doctor-patient relationship needs to be established. We spoke to Ms Green about her relationship with doctors over the course of her life and she shared a range of experiences. Currently, she says she only really sees consultants for her conditions which she says likes because they know her life story and listen to what she has to say, as well as having a very comprehensive knowledge of her diseases. In terms of seeing GPs, she told she had recently swapped medical practices. She explained how she had seen a few GPs as it took a while to find one she felt comfortable with. This anecdote was proof that a doctor-patient relationship is very important to patients, as it can impact how willing patients are to come and seek help when faced with a medical problem. [1.3] Whilst some parts of a doctor-patient interview apply to all patients, such as empathy; clear communication and respect – however other parts of the relationship changes from patient to patient. We compared two types of relationships with Ms Green: paternalism and shared decision making (SDM). Paternalism, sometimes described as the ‘antithesis of autonomy’ is an old-fashioned approach in which the clinician works mostly by themselves in making a diagnosis and then a decision regarding the treatment plan. [1.4] Comparatively, SDM involves a joint process between doctor and patient in working through a medical ailment together, with the patient being presented with options regarding their treatment. [1.5] Ms Green was very clear in which she preferred – SDM. She described how over the course of her life she had experienced many cases of paternalism which did not work in her favour at all. She told us she actively researches parts of her conditions and hence much preferred it when the doctor included her in the decision process. Not all patients in the tutorial group shared the same views, however. One patient said how he preferred the paternalistic approach, as he felt the doctor knew best. Yet, even with this mentality, he took his decisions – for example when he was prescribed anti-depressants and was not told that things would get better before worse. As a result, he has decided not to take anymore anti-depressants, regardless of what doctors say – suggesting that even he is not a complete fan of the paternalistic approach. The paternalistic approach typically suits either elderly patients who are used to being told what to do by doctors or acutely unwell and needing urgent treatment whereas the SDM making process tends to suit younger patients or chronically ill – as with no hope of treating the disease it suits the patients better to be able to decide what treatment works for them and how they want to manage their symptoms. Despite these broad categories, I believe there is no ‘one size fits all’ approach, even when dealing with the same patient. In reality, the best approach is a fluid transition between the two contrasting ideas in line with the patient’s wishes and condition. Clear and informative communication (especially listening) was stressed as a key point by both Ms Green and the other patients in the tutorial group as crucial and when achieved the relationship between doctor and patient becomes an easy one.
Another talking point we had with Ms Green was about where she got her information regarding her healthcare from. In the 21st century, patients are more informed than ever when it comes to their own health, due in part to the rise of the internet and websites such as Wikipedia, NHS choices and WebMD. We were keen to find out where Ms Green got her information from and how she determined it to be reliable. Lay epidemiology, the term used to describe a lay person’s perception of health and the risks that surround certain conditions, is an important factor when trying to understand what a patient wants from a consultation and how best to help them, improving both the doctor-patient relationship and satisfaction with healthcare. [1.6] When we first inquired about Ms Green set about acquiring information she told us how when she became pregnant with her daughter she got in touch with a professor at Southampton University on the matter of how to avoid passing on her allergies down. The professor responded by sending her a book on the best practices to avoid the inheritance. She later laughed when we asked if she would consider doing that in the modern day, and instead said she would simply look it up online. It appears Ms Green is not by herself in using the internet to look up health conditions. Whilst hard to quantify, a study in China estimated 1 in 4 search engines users had looked up something ‘healthcare related’. [1.7] Over the past decade using the internet to research symptoms, treatments and other healthcare related matter has proven to be both useful as well as a hindrance. In the UK, the NHS choices website receives around 15 million views every month by patients looking up conditions online. [1.8] This accompanied by dozens of other self-diagnosing websites, which have an estimated accuracy of 1 in 3. [1.9] Whilst this may appear alarming, the process of self-diagnosing is actually relatively risk free due to the advice always being given of ‘see a healthcare professional’. There are two reasons for a patient getting an incorrect diagnosis: the first being the patient analysing and entering their symptoms incorrectly (unavoidable in most cases and why healthcare professionals still exist) or that the information online is incorrect and misleading. We asked Ms Green how she knows which websites are reliable and she told us how she only uses the websites of respected organisations to ensure reliability, such as the National Eczema Society and the NHS. Other patients in the tutorial group had different approaches, however. One described how they relied mostly on leaflets handed at the GP practice and the hospital whilst another said they fully trusted doctors to provide them the information they need. An interesting correlation grew between patients who researched around their disease and a desire versus patients who liked to be told by their doctors who preferred a more paternalistic approach.
Discussing social determinants with Ms Green was an interesting process. As already mentioned, Ms Green’s condition meant she was unable to work and her husband had to switch from full-time work to part-time. As a result, they are reliant on benefits. Ms Green highlighted the importance of these benefits through the tale of how they were officially taken away from her by a benefits review officer (who incidentally lied about her conditions). She described how the stress of the process of appealing to claim back the money she depended upon impacted her health very negatively. She also told us that she had depended on her car to get about, especially for far away appointments. The story was contrasted heavily by some of the other patients in the tutorial, who were either considering or using private healthcare for some or all of their treatment. It was a stark reminder that even in Scotland, with the National Health Service, inequalities remain within healthcare with regards to socioeconomic factors. In fact, those in ‘excellent’ health on average have five times the household wealth than those in ‘poor’ health. [1.10] This statistic and anecdotal evidence shows two things with regards to socioeconomic factors affecting health. Firstly, that the wealthier you are the better healthcare you can afford – usually resulting in better outcomes. Secondly, the more ill you are the more likely you to find yourself worse off. These two factors culminate to create a downward spiral meaning that often those with chronic illnesses can find themselves in debt and money trouble. [1.11] It is the sad truth that whilst public health experts, economists and politicians work towards changing this, it is people like Ms Green who suffer greatly as a result.
References
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1.1 Greenhalgh T, Hurwitz B, 1999, Why study narrative?, British Medical Journal, Vol.318(7175): p48
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1.7 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001755/ Predicting hospital visits from geo-tagged Internet search logs
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1.9 https://www.bmj.com/content/bmj/351/bmj.h3480.full.pdf
1.10 https://www-jstor-org.ezproxy.is.ed.ac.uk/stable/116917?seq=1#metadata_info_tab_contents Socioeconomic Status and Health
1.11 Relegated to chronic poverty: financial difficulties faced by people with mental illness in the United States http://web.b.ebscohost.com.ezproxy.is.ed.ac.uk/ehost/detail/detail?vid=0&sid=9d032adc-88c6-4f4d-9022-42f7aaad2bab%40sessionmgr102&bdata=JnNpdGU9ZWhvc3QtbGl2ZQ%3d%3d#AN=129346301&db=bth
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