HESSAY
Introduction
There is an unfortunate problem at the centre of contemporary medical care. The provision of care has become increasingly more complex and hard to manage, due to the advancement of medical knowledge and scientific discoveries. This subsequent proliferation of technologies and treatments has diverted care from the human experience of being ill to almost a numbers game on a spreadsheet. Thus, impeding the extent to which doctors can listen to patients and learn from their experiences. 1 It is crucial to have a deep knowledge of the patient’s perspective and experience of illness for the delivery of effective patient centred care.
Throughout both interviews, my partner and I sought to understand the experiences of our interviewee, Louise (names have been randomly assigned to protect confidentiality). In this report, I have pursued to explore and discuss particular themes and ideas in Louise’s experience of illness (sub-headings within the report); I have chosen these topics to discuss as I felt they were what Louise found were most significant in her narrative. Our findings will be stated in this report, but also compared and contrasted with some of the findings that my peers have found too, allowing me to obtain a variety of experiences and consequent attitudes in patients’ illnesses.
Louise is a 59-year-old white female, who has suffered from epilepsy her entire life. At a younger age epilepsy played a massive part in her life, but since 1998 she has only had 2 fits which was great to hear her condition was improving. She said that she had short term memory problems, where some days she was totally on it and some where she would forget several things, but throughout the interview she came across as very alert and wasn’t forgetful at all. Louise currently lives with her husband Graham who worked as a fire fighter for the past 20 years. She worked in healthcare administration for most of her life where she processed patient data from hospitals all over Scotland, but is now enjoying her retirement in a well-kept home in Craigleith. Her hobbies include walking, gardening, going to church and seeing friends.
Louise lives in an attractive area, approximately 20 minutes outside Edinburgh. Data from the Scottish Index of Multiple Deprivation 20162 put the area in the 6th decile of its deprivation scale, indicating it is in mid-range of deprivation of Scotland. The area lies around the national average when it comes to income, health and crime. are is also This data corresponded with our own impressions of the region, which is relatively well maintained and has a selection of other social amenities available.
Discussion
Doctor Patient Relationships
Louise has been diagnosed with epilepsy since early childhood and has attended several clinics and been under the care of numerous doctors. She was first referred to an orthopaedic surgeon who didn’t really know much about epilepsy and wasn’t really treating her condition. This was very troublesome for Louise as she didn’t feel like her treatment was being tailored to her condition/circumstances. She then went to the Northern General and saw a doctor who was only used to seeing the most severe cases, so she almost felt as if her condition wasn’t serious enough for the doctor. It reached the point where every 6 months she would be seeing a totally different doctor. These doctors will be working in very busy clinics and will encounter several patients they haven’t met before. Within a brief assigned time, the doctor must become rapidly familiar with the patient’s previous history, develop a rapport and then move on to the next patient. Additionally, the patient has to swiftly trust a new face solely on the basis of confidence in the profession. Both of these factors are very hard to be put into practice in several situations and one cannot but sense that if patients experienced continuity of care, an improved standard of care would result, along with a more effective consultation for both parties. A study conducted in Norway3 showed that patients were shown to value their relationship with their doctor more and felt they had more control over their health when they kept seeing the same doctor. The study also showed that this continuity in care allowed the doctor to save a lot of time by already knowing the patient and their complications, improving the efficiency of the system. These studies correspond to what Louise told us, she explained to us how seeing different doctors made her initial treatment quite disjointed and hard to manage, and that they seemed to be ‘undoing each other’s work’. When she decided to just deal with her GP only instead of the numerous specialists she saw, this massively improved her experience and she said she finally felt like her care was being properly managed. Good continuity of care inspires trust and confidence in the doctor, and is an imperative in modern day care. To prove all of this, when we asked Louise about the things she would change in her experience with healthcare as a whole, her response was to improve the continuity of care and not have several different doctors, highlighting how significant this theme is in the effective treatment of patients.
Louise has always trusted her doctors greatly. She told us that she would always act upon what the doctor told her to do, and was evidently used to the previous paternalistic approach of healthcare. She described how the reason she went to the doctor was for them to make her better, not for her to do the job of the clinician. Shared decision making and the concept of healthcare consumerism is not for her, she longed for the expert to tell her what to do rather than ask her to weigh up ‘complicated options’. She even went as far as saying that shared decision making was a way of the doctors assuming less responsibility. In a report, it was noted that age was identified as an important factor in the way that patients responded to their doctors.4 A comment made by several doctors in this report was that older people tend to still hold doctors in the same sort of esteemed position and mostly don’t take charge of their conditions. This is consonant with Louise’s experience, and her reasoning for this belief was due to the rigorous training and experience she had believed physicians had received, and the general trust she had in the profession. This was very much in contrast to one of the other patients that were discussed in our tutorial group. This patient was a young pregnant woman called Jenna with Ulcerative Colitis and Multiple Sclerosis. Jenna was very much in favour of shared decision making, and questioned every decision that the doctor had made. She worked in healthcare research so was very informed about the different treatments and side effects, making her somewhat a ‘health consumer’. Lupton describes this as someone who acts in a calculated manner to engage in self-improvement and who is cynical about clinician knowledges.4 She had a very active role in treatment and looked for current NHS clinical trials due to her work to dig deeper into the treatment of her condition. In current healthcare, this partnership between patient and doctor is at the heart of any definition of medical professionalism. An increasingly well-informed and confident public wish to have fuller exchanges with doctors, and for the patient to have their care tailored, it is important they’re involved in the decision-making process.5 It is also apparent that during the later stages of the 20th century, clinicians have been required to be clearer and explain more to the patients about treatments,6 in order for a better doctor patient relationship and also just in case something goes wrong, the patient can be informed. Jenna selected her treatments and in addition when the GP recommended steroids she refused, due to having read her own research. She decided that the steroids would have a negative impact on her health and her baby’s health and decided that the risk wasn’t worth taking. This partnership though doesn’t suit everyone as in the case of Louise, and highlights the importance of doctors having to adapt their consultation and style to every patient they deal with. Louise is polar opposites with Mary as she didn’t want to choose treatments, and just go with what the doctor told her.
Experience of Illness and Illness Narrative
In the early 80s Louise was suffering from several epileptic fits that she said were triggered by mostly flickering lights and music. She said that she had one serious fit a month, and one mild fit a day. At first, to control the fits she took various medications that were prescribed by the doctors. It was very surprising to hear that her medication even though they would help reduce the number fits, they had a significant negative impact on her lifestyle. She described the medication as making her feel like a ‘zombie’ whenever she was on it and that it took over her life. During these spells of feeling ‘blank’ she said she didn’t know what was going to happen next. This evidently had a massive impact on her lifestyle in several aspects. The first of which was her career. In her job, her colleagues and bosses thought she was ‘playing a fool’ at work and almost as if she was pretending to be in this state deliberately. She confided in us saying that this was one of the lowest parts of her life and how she thought about committing suicide at this point due to the sheer frustration she was experiencing. It was evident from her facial expressions and hand gestures how upset and frustrated this experience was for Louise. I really empathised with Louise at this point, as I can only begin to imagine how frustrating it must feel for people to say you’re just being foolish when you’re suffering from such a grave chronic condition. This is a prime example of how certain lay perspectives can be very degrading and have a massive impact on how people cope with illness. Bury describes how the experience of chronic illness leads to a loss of confidences in social interaction or self-identity and terms this as biographical disruption: involving the negotiation of relationships at work and home.7 It is clear that Louise has experienced this disruption throughout her work and has had to deal with this stigma from her work.
She was really overwhelmed by the sheer intensity of her illness at this point, reflecting a chaos narrative.8 This stage represents Louise’s sense of control and the frantic, relentless attempts to regain it. Frank calls it the anti-narrative of time that highlights the interruptions caused by illness. Louise struggled to describe this era, and her narrative was quite disjointed and incoherent, corresponding to Frank’s description of the anti-narrative. Frank explains how these narratives coexist and intermingle to compose the illness experience. This is true of Louise’s experience as her chaos narrative displayed elements of a quest narrative at various points too. The way she was able to regain control in her life was mainly through her husband and through surrounding herself with people who were sensitive and accepting of her illness. This however wasn’t the case through her early life when it came to Louise’s mother, Polly. Polly was very active and loved to be out the house a lot of the time, however due to Louise’s condition this wasn’t possible due to the frequent appointments and hospital visits etc. Her mother told her that Louise’s epilepsy ‘ruined her life’ and that she was almost a social embarrassment. Louise then went on to say that this experience in fact made her more resilient, as she had got a lot of trauma through her mother it made her dealings with others easier. This reflects a quest narrative8 where a person journeys through suffering and gains something from it. Her husband Graham, was her pillar and helped her through her day to day life. It’s common in relationships when one partner has a condition, the illness becomes the uninvited third party in the relationship and can interrupt the relationship. This was not the case in theirs, due to Graham’s understanding of the condition and deep care he had for Louise. Louise said his cool-headedness that he had acquired from working in the fire service for 20 years helped her find a path out of confusion and fear. When couples face serious illness, it can be very grievous but he helped with reminders, troubles at work and was her general source of comfort. Previous work has established that emotional experiences are shared between spouses9, as in the case of Louise and Graham, this was highly evident and proved to be one of the main aspects in her coping with epilepsy. It was also helpful that the fire service was very accepting of Graham having to leave or take days off to take care of his wife. This juxtaposes with the lack of understanding in Louise’s work of her illness, and how the stigma surrounding her condition was so prevalent in her workplace. Louise’s narrative thus demonstrated the synchronicity of chaos and quest narrative8 forms in her narrative. All illness narratives are subject to different discourses and may fit into one or all 3 narratives. The fact that we can’t fit her narrative into a specific compartment represents the complexity of health and the amount of different ways people can experience illness, highlighting how each patient is unique and must have their care and consultations tailored to them. This is an imperative role for the doctor in order for the patient to feel empowered and that the human nature of health care is not lost, to provide the best experiences of care.
Social Determinants
Health usually exhibits a gradient by socioeconomic status, so that each successively more advantaged group has longer life expectancy and is regarded as ‘healthier’.10 Louise is a from a middle-class background, and is now retired with some level of disposable income which she is able to invest in a healthy lifestyle. She has a smartphone, which she said is one of the best decisions of her life due to the practicality of it. Since she had her operation 15 years ago to remove some lesions in her temporal lobe she has struggled with loss of short term memory, so often forgets tasks, appointments, medication etc. However, once she got the phone either her or her husband can enter reminders on her phone so she doesn’t forget. This has massively helped her cope with her illness on a day to day life. She also is able to eat healthily and mostly eats home cooked and healthy food. These benefits of a higher socioeconomic status (SES) contrasts with Macintyre’s findings from more deprived areas of Scotland. The lower SES often acts a barrier in implementing a healthy lifestyle. This may be due to the fact that more advantaged groups in society tend to have better access to resources such as finance, time, coping skills and to avail themselves to health promotion advice (e.g. to stop smoking, improve diet, control alcohol levels etc.). Macintyre notes that disadvantaged groups are usually harder to reach and find it harder to change their behaviour. Less advantaged people also receive less benefits from lifestyle change due to their vulnerability to other damaging exposures. For example, although the incidence of breast cancer is lower among deprived women, survival rates are worse among them. So as a society the intervention required in lower strata of society needs to be more intense and more appropriately targeted, in order to stop the disparities in SES lead to disparities in health. Louise’s age, gender and ethnicity didn’t impact on her view of professionals or illness experience.