(I have chosen this image as I feel it reflects the journey into the unknown that patients go through.)
Reflections based upon my attendance at a day conference ‘Patients’ Experiences Following Major Illness or Injury’ on 24 March 2015.
These are my personal reflections based upon information discussed and shared throughout the day. I will be mentioning only one speaker by name and will provide links to his important work, but will respect the requested anonymity that on occasion was requested. As a sociologist I am passionate in making academic research accessible and so will try an avoid using academic language or discourse where possible; please forgive me if I lapse at times!
The focus of the day was to introduce the findings of research conducted using secondary data* taken from healthtalkonline regarding how hospital patients felt their experiences post major illness or injury related to their previous expectations, both explicit and implicit. Discussions focused around the communication of medical staff and societal expectations of recovery; both of which I will expand upon later. (*Secondary data is data that has been previously collected and anonymised then stored for researchers to use later. This means that the research team in this instance did not interview people themselves. I will be discussing the pros and cons of this particular method at the end.)
If you google ‘getting back to normal’ (without quotation marks), the first link is one to a NHS website that unhelpfully mentions simple surgery such as gallbladder removal only takes a week to recover from whereas major surgery such as a hip replacement takes a couple of months! Whilst I am sure the author of the website is trying to be helpful, putting a timescale such as one week creates expectations upon the patient, their family, and perhaps more importantly their employer who could be become suspicious if the employee is taking longer off work. Recovery does not necessarily mean someone can return to his or her normal life or pre-operative state. For some, such as those awaiting joint replacement it is hoped that their new joint will mean their recovery results in a better life; but for those whose hospital stay is not planned due to a heart attack or major injury, life might not be the same and a period of readjustment both physically and psychologically is needed. These issues were the focus of discussions within the conference with many delegates reflecting upon their own experiences of being discharged the day after an operation and being given a sick note for two weeks; an implicit reference to the time expected for complete recovery. The medical profession cannot be blamed for not giving patients more explicit timescales because once discharged from the ward, the nurses no longer see the patient and so cannot know the reality and clinic follow-up appointments can be as long as six weeks later. It is hoped therefore that this research project will assist in informing professionals of the reality faced by patients once discharged from hospital. An excellent example of this was a patient included in the research having been told they would be in plaster for six weeks followed by two weeks of physiotherapy believed, quite naturally, that after eight weeks they would be better. The timescales given by medical staff was explicit but had an implicit meaning.
The data used covered the period 2003-2012 comprising of the following specific conditions/illness: heart attack – 44, intensive care – 37, leukaemia – 39, injury requiring an overnight stay – 45. Within the interviews, participants made specific reference to: the event, their understanding of the event, physical and emotional experiences, interaction with health professionals, challenges of being at home, social support (friends and family not welfare), impact upon their relationships, financial implications*, employment, “getting back to normal”/”almost normal”/”new normality”. (*Welfare as in benefit payments were not part of the research due to the time period of the data set and changing regulations – financial implications are also very individualistic to the illness and individual.) There was also a reference to the difference between illness and injury; whilst no illness is pre-planned, there is a trajectory that most patients will travel from pre-diagnosis, diagnosis, treatment, and hopefully recovery, whereas injury is sudden and unexpected.
An interesting finding from the research was the emphasis by patients upon the process of “recovery as work”. To recover needs work whether it be daily exercises and not just with the physiotherapist, managing as new dietary regime, changing to a more active from the previous sedentary lifestyle, reading and processing the information leaflets given, and perhaps the most important activity of acknowledging self-identity throughout. Whilst this was explained with specific reference to the previously mentioned conditions, it still I feel has resonance with many others. Heart attack – getting better, starting to exercise, change of diet; leukaemia – learning how to avoid infection; intensive care – regaining mobility, accepting why the person was in intensive care (some are pre-planned, others are not), acknowledging and seeking help for hallucinations; injury – adjustment to change of physical ability, pain, mobility, seeking help for why the injury occurred. All of these need “work” by the recovering patient and acknowledgment by those around, including the medical professionals. Many expressed a sense of shock as to how long it took to recover, the great intention to exercise daily quickly became a lack of interest as the results were not as they had implicitly or explicitly been led to believe; they started to feel a failure and a “bore” to their family and friends. The older we get the more likely we are to know someone who has had X or even had X ourselves, how often therefore do we say, with good intentions, “oh when so and so had X they were back at work in four weeks”, or similar? A point I feel it is important to reflect upon – comparing one person with another is not necessarily very helpful, however good the intention!
‘Recovering from critical illness’ was a presentation led by Dr Stephen Brett, an intensive care consultant and academic researcher, (some of his work is available on open access so just google him as I am not sure if this link will work! http://www.trialsjournal.com/content/15/1/38). I will be focusing upon what Dr Brett discussed as I feel it is vitally important work and relevant I feel to all of us. “Leaving ICU is the start of a journey”, a patient is not discharged home from a stay in intensive care, they move to a ward but their stay, irrespective of length is something they remember for a long time yet rarely get the opportunity to talk about. A reason for this is that their memory is often distorted or they wonder if it was a memory or dream/nightmare. They can have acute skeletal wasting due to lack of movement and muscle having been used to provide fuel for the organs, which also results in a loss of memory, attention, executive and linguistic/numerical function – all of which is difficult to quantitatively measure due to being patient specific. Delusions are very common and can still be impacting a patient two years later; these can vary from the patient being convinced they had got a divorce whilst in ICU to having been abducted by aliens – none of which are a laughing matter for the patient and those who care for them. Dr Brett, along with colleagues, recognised that patients leaving ICU needed follow-up care from specialists within the field irrespective of other disciplines involved in their care and as a result offers patients the opportunity to return to a clinic where post-ICU issues can be discussed without the person feeling “silly” and solutions offered. Anecdotally this has helped patients and provided useful evidential data – of course, the attendance at clinic is voluntary and so the information gleaned is skewed toward active participants.
It is not possible to discuss all the issues covered by the conference, but I feel the following example to be an excellent summary of the dilemma facing both the medical profession and society at large. The gender of the patient is known, but to further protect their identity I shall refer to them as ‘the person’ or ‘X’.
X had a prolapsed disc and undergone surgery. Six weeks post-operatively they returned to work only for there to be complications resulting in further surgery due to a loss of leg function. It took three years of rehabilitation for the person to be able to walk again. The secondary data interview reports that the one of the worst experiences was discharge from the hospital once an issue with the bowel had been ruled out resulting in their GP referring to a private hospital for the second operation to be carried out. Five days post-operatively the patient was discharged “in bits” with analgesia but not knowing what to do and was discharged by physiotherapy “against my will” when still unable to walk six months later. The person reported not being able to function at home, do normal things and watched the Olympics by lying on the floor. During this period, family relations began to strain with the partner working reduced hours and this in turn impacted negatively upon their child. X was seen by everyone as ‘disabled’ and they returned to work five months later but found the journey exhausting. Occupational health eventually formulated a nine-month plan for a return to work full time. The person doubted whether they would ever get back to normal and had to create a new normal, which progressively became like the old normal. X concluded that they would have appreciated a proper projected recovery period as they (and society) has set unrealistic goals = failure to achieve = self-failure.
It is this aspect of “self-failure” I now turn to. I am certain this notion is something that is familiar to everyone in some format. Expectations are given to us regarding all aspects of our life; I am a failure at being a domestic goddess yet I still watch those television programmes that make me feel even worse. Issues regarding health, illness, and recovery are much more serious than this. Returning to my earlier point about knowing someone who had a particular operation who recovered quickly, or the totally unrealistic recovery portrayed on the television especially medical dramas. It would be useful if Casualty and Holby showed a discussion regarding what not to do once home immediately after a heart transplant or broken limb, but of course, script writers would see this as boring. At least in The Archers, a character returning home after a nasty accident has not been working at full capacity! I digress, but the media does have a part to play in how we perceive our own recovery goals and that of others especially when sports people return to their sport almost immediately following a nasty injury.
I began with the information regarding recovery of one week after gall bladder surgery and referred to this information as being unhelpful. Documented recovery times are themselves a paradox, whilst it is useful to have an idea in order to alert medical professionals when something might be wrong, the time scales need to account for individuality and how well the patient was before hospitalisation, their age and the nature of their employment (if applicable). The problem of course is that we compare ourselves with others and do not wish to become a burden upon others so struggle on – “Hello X, how are you?” “Oh very well/ fair to middling thank-you, how are you?” and so the conversation goes, especially between people in a GP waiting room!
Returning to the issue of secondary data for those unfamiliar with the concept. Researchers who use census data are using secondary data, the statistics have been gathered by someone else who imputed the information and made it available, this is known as quantitative data. Qualitative data however is the quality information provided in interviews. Some interview transcripts are provided to other research bodies after any identifiable information has been removed. I can testify that researchers when using interview data gathered for their own research do work extremely hard at removing any identifiable trace – I am currently on the advisory group for a piece of research and haven’t been able to identify a case recently presented at a conference, despite trying hard to do so. This unidentifiable information is stored and can be accessed at a later date as is the case in this specific research. The downside or con of using such data is that the questions answered might not fit exactly with the new project and there is no opportunity to re-interview the participant for clarity or further answers. Conversely, the pro or upside is that there is no emotional involvement between the researcher and the participant especially when researching difficult experiences; in this instance, the reference to a specific hospital and/or doctor has been removed so the researcher is not learning information that might influence their own behaviour. An example of this might be hearing that Dr X was rude and hospital Y was dirty, and the researcher awaiting an appointment with Dr X at hospital Y or even being friends with them. The data is used without emotional influence, though of course is open to a varied interpretation by different research teams.
The ‘take home’ message of the conference was that patients are people who are individuals and whose circumstances vary from the patient who had the same operation/procedure etc on the same day. Recovery is a two-way process but realistic goals need to be set by the medical profession based upon the individual and not the perceived norm.