Understanding the Experience of Illness Report
Introduction:
The purpose of this report is to enhance understanding of the way patients experience illness and the healthcare system, and to exemplify learning from the Health, Ethics and Society aspect of the course. To allow us to gain insight into the personal experiences of a patient, I was given the opportunity (along with my colleague) to conduct two interviews with Mr Taylor (patient name has been changed to maintain confidentiality), a sixty five year old Caucasian male living in Edinburgh.
Mr Taylor lives alone with his dogs in a residential flat. He has been a musician all of his life, still playing in a neoclassical rock band, and describes music as one of his three ‘burning passions’, along with modelling and ancient history. He has one son and a daughter-in-law currently living in Spain, and his parents and brothers reside in Australia.
My first impression of the area in which Mr Taylor lives was that it was a relatively deprived one; there was little green space in the vicinity of the apartment buildings and the buildings themselves did not look particularly new or well taken care of. There were also very few shops or businesses nearby. According to the ScotPHO Health and Wellbeing profiles, male life expectancy here is estimated at 70.3 years, lower than the national average of 77.1. [1] The population living in income deprivation is also significantly greater, at 21.2% compared to only 12.2%. [1] Moreover, the SIMD16 ranking of the area places it into the 3rd decile of most deprived areas in Scotland. [2] This depravity is reflective of Mr Taylor’s low socioeconomic status.
Mr Taylor suffers from cardiovascular disease, however when asked to describe his health he gave us no real diagnosis of this other than describing how it has slightly affected his ability to walk, and instead focused on ‘short-term memory problems’ as the issue that he believed affected his life more so than anything else. He told us “my memory’s real bad” and that he couldn’t remember what the exact diagnosis was that was given to him by his doctor regarding his “arteries making walking harder”. He also recalled a number of episodes which he described as mini strokes, in which he lost the power of speech and was unable to remember where he was or what he was doing there.
This report will focus mainly on Mr Taylor’s experience of healthcare and of suffering from cardiovascular disease as well as short-term memory problems, as although this is not necessarily a chronic illness it is the condition he believes has had the greatest impact on his life.
Discussion of interviews:
Experience of illness, lay perspectives, social determinants:
Illness narratives are described by Kleinman as a story told to you by the patient to award the events and long-term path of distress they have experienced some logical order [3] and are an important tool in doctors understanding, and relating to, situations and experiences they have never encountered firsthand. Illness narratives can also be important in understanding the source of a patient’s health beliefs, for example whether they have inherited ideas from their parents, or from what they have read on the internet. Mr Taylor told us that his thoughts and opinions on health were born largely from his own research into ancient religious texts, as well as what he sees on television. I understood that Mr Taylor was quite impressionable in this way; he believes most things he is told by the media without question. He told us, for example, that he had seen on the news “these perfumes, they contain these chemicals that actually rot your skin. I chucked all mine away after seeing that”. I believe one of the reasons for his impressionability about health beliefs could be his lack of formal education; although knowledgeable about subjects he finds interesting, Mr Taylor left school at an early age and as such perhaps has little scientific knowledge to base opinions such as these upon, instead relying mainly on his own past experiences of health and what is relayed to him by the media.
According to Frank, illness narratives can be classified into three main types: restitution, chaos and quest narratives. [4] However, I don’t believe that Mr Taylor’s narrative quite fits any of these categories. When he was asked about the impact of his impaired memory on his life, he described how the condition was useful as an excuse to not participate in social events or engage with people when he didn’t want to: “this dottery side, for me it’s usable; I can be who I want and people make excuses for me”. Conrad and Barker describe a phenomenon termed ‘contested illness’, where sufferers insist they have a specific disease that their healthcare professionals do not recognise as a definite medical issue. [5] Whilst I believe this does apply to Mr Taylor’s condition to a certain extent; he does indeed seem to have trouble with his memory and I am unsure as to whether this has been medically diagnosed, both me and my colleague were of the impression that sometimes the forgetfulness was slightly selective, and used to justify not being able to remember things when this proved advantageous to him. This could highlight a limitation in Frank’s classification of illness narratives [4], although more evidence would be needed to confirm this.
Mr Taylor told us repeatedly that aside from its positive benefits, illness had not affected his life at all; when questioned, his perspective was summed up by “that’s life, hen”. Whilst Mr Taylor clearly normalises his illness, I think that it is important to understand that whilst disease can be a greatly distressing and disruptive event for many patients, to others it does not always bring suffering. Experience of illness can include the way a person’s life is thrown into chaos (biographical disruption) [6] and many of the patients interviewed by my colleagues had experienced this on a large scale, for example, because of their conditions they were no longer able to play sport or carry out regular daily activities. Cassell states that “the only way to learn whether suffering is present is to ask the sufferer” [7] and although many would assume a diagnosis of cardiovascular disease would ensue suffering and disruption, Mr Taylor seemed convinced it hadn’t affected his life in any way..
When asked what it meant to be healthy, Mr Taylor said “to feel young”. Throughout the interviews, he repeated numerous times that he did not feel he was ill and that he did not have any intention of ever visiting a hospital again, stating that to do so would be “giving up”. Mr Taylor viewed himself as being healthy because he had functional capacity; the ability to perform normal everyday tasks and continue to work. He believed that he kept himself healthy by avoiding meat and sugar in his diet, drinking Chinese tea and ozone-infused water “to kill the bacteria” and using spirulina algae “for healing”. Of all the patients interviewed by my colleagues, I am not aware of any that took part in similar unconventional or alternative approaches to healthcare, and I believe it is indicative of Mr Taylor’s lack of trust in modern healthcare that he has more faith in these preventative steps than he does in medicines prescribed to him by his doctors. I believe this was due to his perspective of what it means to be ill; he has functional capacity and therefore doesn’t see any need for medical intervention.
It also became evident that Mr Taylor was of the opinion that wealth and socioeconomic status played a major role in determining the standard of healthcare you would receive. I believe that living all of his life in a state of relative economic depravity was one of the reasons he normalised his illness to such an extent that despite the diagnosis, Mr Taylor does not view himself as ill. Several studies have suggested that there is a link between more economically deprived areas and higher prevalence of disease as well as lower life expectancy, both of which are reflected in this case in the ScotPHO Health and Wellbeing profile of his area. [1] For example, a correlation exists between low quality housing and respiratory symptoms and heart disease. [8] As a result, Mr Taylor is more likely than a patient living in a more affluent area to have grown up around/be neighbours with people experiencing ill health and as such it has become commonplace for him. He also attributed illness to “getting older”, viewing it as an inevitable side-effect of ageing. These factors have caused him to normalise his own illness as it does not seem out of the ordinary to have such a condition, explaining his attitude that illness is simply a “part of life”, and a natural part of ageing.
Doctor-patient relationships and experience of healthcare
Engel observes that “the interpersonal encounter between the patient and the physician is the keystone of medical care”. [9] I believe this is true and that maintaining good doctor-patient relationships should be as important to a doctor as clinical outcomes. Throughout both interviews, Mr Taylor demonstrated that he had a cynical, negative opinion of the world. Much of the time he was speaking, it was to express his distaste at numerous different aspects of the world and society, for example whilst answering a completely unrelated question about where he normally finds his reading material he commented “this world is a material world and it’s mostly used for suffering”. He had a similarly scathing opinion towards most elements of the modern healthcare system.
At numerous points throughout our conversations, Mr Taylor informed me of his strong dislike of hospitals; he described them as treadmills, where people are pushed through in a systematic way without any real connections between doctors and their patients. One article describes establishing personal connections between doctors and their patients a fundamental necessity of the care they receive and one of the most important aims of a medical consultation, although rarely acknowledged as such. [10] I believe that, as a doctor, forming and maintaining a good relationship with your patients is vital to ensure that patients feel listened to and that their needs are taken care of and the GMC Good Medical Practice guidelines outline how important it is that a patient is able to trust their doctors with their lives. [11] As a consequence of the disconnection that Mr Taylor felt between himself and the doctors and nurses at the hospital, he was adamant that he would never again return to hospital.
Whilst Mr Taylor displays an extreme aversion to hospitals, his attitudes towards the healthcare workers at his own local GP surgery are the opposite. He explains this contrast in terms of the connection that he feels towards his GP that he sees relatively regularly, compared to hospital staff he rarely sees. According to him, “a doctor [GP] will get used to his patients and understand how they think and stuff, they’re in touch with their energies… you’re not just a number”. Mr Taylor feels more of a personal connection to his GP than to clinicians he sees at a hospital, and expresses a preference for the one-to-one interaction he associates with his GP; presumably as he has developed more trust as a result.
It became apparent during our discussions that Mr Taylor’s childhood was complex and troubled. He described his father as a violent man, recounting to us two occurrences of having his nose broken by him as a child. Furthermore, throughout our conversations he regularly brought up negative memories from his childhood and couldn’t recall any happy memories at all. When the attitudes of Mr Taylor towards doctors and the modern healthcare system as a whole are compared to those of other interviewees from my group, two distinctions appeared to exist. Almost all patients with a higher socio-economic status and more formal education than Mr Taylor seemed to recount much more positive doctor-patient relationships and most highly praised the NHS. A possible explanation for this disparity could be that, as doctors are generally seen by society as moderately affluent and well educated, patients in similar situations are able to relate more to their doctors and therefore feel more comfortable around them, engendering more positive experiences of healthcare. A further distinction became apparent when Mr Taylor was compared to patient X interviewed by my colleague who has a very similar socioeconomic status, but had a much happier childhood experience; the doctor-patient relationship is often compared to that of a mother and child [j] and with a much healthier relationship with their parents, subconsciously patient X may find it easier to engage in such a relationship with their doctors.
Another factor which seems to influence the relationships Mr Taylor has with his doctors is his opinion that many doctors and nurses, especially in hospitals, have no real “depth” or “warmth” in their hearts for patients. He told us “the smile and the friendliness is there, but it’s not genuine. It’s just what the job requires”. I think that the violence and lack of affection that Mr Taylor experienced from his parents as a child, coupled with the solitude of his life as a single man whose family lives in other countries may have contributed towards this opinion. Throughout his childhood and in his current situation, Mr Taylor is unlikely to have experienced a great deal of care and friendliness from others and therefore it would make sense that he is cynical and wary of accepting this when shown to him by doctors and nurses that are practically strangers. An important aspect of the doctor-patient relationship that is often forgotten is that in such a relationship, two distinctive people are involved and often these people are very different. [12] Due to his low socioeconomic status and relative lack of formal education, Mr Taylor perhaps finds it difficult sometimes to relate to and understand doctors who he believes are in such a different situation than himself and as such this affects the doctor-patient relationships he forms.
Reflection:
Having had very little experience of conducting qualitative interviews in the past, I felt apprehensive before meeting Mr Taylor. I wasn’t entirely sure what to expect from the very brief telephone conversation I had had with him, and our first encounter was quite troubling; when my colleague and I arrived for our first scheduled interview, a quite visibly distraught Mr Taylor informed us that one of his dogs had been hit by a car earlier that day, and asked if we could reschedule for the following week. This was quite a difficult situation to be faced with as it was clear that Mr Taylor was feeling quite distressed. I was able to relate to the way Mr Taylor was feeling as I also have two dogs at home and can understand how upsetting this situation would be, and I responded by sharing this information with Mr Taylor and expressing my sympathy, as well as assuring him that it was not a problem for us to reschedule the interview.
I felt much less anxious when returning for the rescheduled first interview, and even less when returning for the second, having more understanding of what to expect and more confidence in my ability to conduct the interview after having already successfully done so. I am thankful that this experience has allowed to me improve my confidence when interacting with patients.
Although I enjoyed the experience, one of the aspects of the interviews that I found challenging was the quite difficult topics that were discussed. Hearing the way that Mr Taylor viewed the world so pessimistically and listening to him talk about his troubling childhood was not easy and colleagues in my group described their interviews mostly as having quite cheerful, uplifting atmospheres where their patients were relatively positive about their illnesses and their lives. However, it was very humbling to have a near stranger trust me enough to share such private details of their life. I realised that this is a real, rare privilege that comes with being a doctor, and one that shouldn’t be taken for granted.
Furthermore, it was often difficult to control the discussion throughout the interviews. On one hand, it was helpful to let Mr Taylor naturally bring up what he believed to be important and relevant to our questions and our aim was not to have the interviews feel too inflexible or formal. On the other hand, however, through asking predominantly open questions in the first interview I felt that Mr Taylor rarely stayed on topic, and thus some of our questions we felt were never fully answered to our satisfaction. We adjusted our interview style prior to the second interview, including less open questions and more directed, closed questions to attempt to steer the conversation towards what we wanted to find out. This worked to an extent, although there were still instances where we felt our questions weren’t quite answered in as much depth as we would have liked. In the future, I will practice the use of semi-structured interviewing and enhanced questioning techniques when conducting qualitative interviews to ensure the discussion stays predominantly on topic.
Overall, I am enormously grateful for the opportunity to interact with a patient so early in the course, and especially for the insight into the life of someone with such different experiences to my own. This experience has allowed me to better understand the importance of what we learn in the Health, Ethics and Society element of the course and has also reinforced how essential it is to listen to patients, and how their narratives are an invaluable tool to help us understand and empathise with situations very different from our own. It was an extremely gratifying experience, and one I am looking forward to carrying with me throughout my career as a doctor.
References:
[1] Scotland.shinyapps.io. (2018) ScotPHO profiles. [Online]. Available at: https://scotland.shinyapps.io/ScotPHO_profiles_tool/ [Accessed 17 Nov. 2018].
[2] The Scottish Government. (2016) Postcode to SIMD rank. [Online]. Available at: https://www2.gov.scot/Resource/0053/00534448.xlsx [Accessed 17 Nov. 2018].
[3] Kleinman, A. (1988) The Illness Narratives: Suffering, Health and the Human Condition, New York: Basic Books.
[4] Frank, A. (1995) The Wounded Storyteller: body, Illness and Ethics. Chicago: University of Chicago Press.
[5] Conrad, P. and Barker, K. (2010) The social constructs of illness: key insights and policy implications. Journal of Health and Social Behaviour, 51 (5), 567-579.
[6] Bury, M. (1982) Chronic illness as biographical disruption. Sociology of Health and Illness 4 (2): 167-182.
[7] Cassell, E. (1991) The Nature of Suffering and the Goals of Medicine. Oxford: Oxford University Press.
[8] Nettleton, Sarah. (2013) ‘Explaining the links between class and health’ from Nettleton, Sarah, The Sociology of Health and Illness pp160-166, Cambridge: Polity Press.
[9] Engel, G. (1973) Enduring attributes of medicine relevant for the education of the physicians. Annals of Internal Medicine, 78(4), 587-593.
[10] Suchman, A. (1988) What Makes the Patient-Doctor Relationship Therapeutic? Exploring the Connexional Dimension of Medical Care. Annals of Internal Medicine, 108(1), p.125.
[11] GMC. (2013) Good Medical Practice. [Online]. Available at: http://www.gmc-uk.org/guidance/good_medical_practice.asp
[12] Boudreau, J., Cassell, E. and Fuks, A. (2018) Physicianship and the rebirth of medical education. Kettering: Oxford University Press, p.65.