October’s chat looks at undertaking routine surveillance imaging for oncology patients and the capacity of radiographers to establish short term relationships as well as understanding patients’ needs and expectations.
To support the chat discussion we have compiled this month’s blog using published excerpts written by oncology patients’ on their experience of undergoing imaging examinations and the phenomenon, “scanxiety”
“I awaken on this chilly morning without speaking. I scoop a few bites of my daughters’ oatmeal, then bend down to give them a kiss. The last thing I want to do is alarm them, but I can’t resist. “Today’s an important day for Daddy,” I say, pressing my cheek against theirs for a second longer than normal. Then I get in the car and drive.
The date is not circled in red on my calendar. Often I don’t even write it down. I don’t have to. It gets locked into my inner Outlook calendar and gradually grows larger in size and gravity as the day approaches, as if I’m being pulled backward through a looking glass. Objects in front of you are closer than they appear.
It’s my cancer scan. My regular date with my digital destiny, in which a few seconds of X-rays will show whether the handful of nodules that have been in my lungs since I was diagnosed with bone cancer three years ago have grown larger.”
“Imagine every 1/3/6 months (depending on your scan schedule – mine is 3 right now!) taking a test that ultimately determines your future, but it being a test you can’t cram for, that you can’t influence in any real way. You just have to hope the drugs are working.
And then imagine the wait for the results.
In a way, and I know this sounds crazy because my cancer has been growing for the last few scans, I’m less worried than I was when it was stable. I know I’m going to be changing treatment at some point soon. Which means if my new hormone drug, exemestane, has worked, then that’s a much better result than I’m expecting. But changing treatment means there’s one less set of drugs available ahead of me to keep me alive. And that’s a terrifying prospect!”
“Every three to four months I get a wake up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, Mentally. It takes living with cancer to yet a another level of heighten sense of mortality and anxiety. So MANY thoughts and what ifs course through my brain. SO hard to shut it off..Scan time makes me think about life with my kids and spending as much time as I can with them. Scans make me reflect on what I have done to leave a legacy and all the crap that I have yet to accomplish; like writing a Will. And there are crazy dark thoughts, ones that I don’t write about that make me exhausted and even more scattered brained than the chemo brain. IT makes me think back to choices I made and the things I can control. Did I DO enough? I know cancer doesn’t work like that but it is hard to tell your mind that.”
“As both a metastatic breast cancer patient and a teenage leukemia survivor, I am all too familiar with this feeling. I have had to have almost every possible tool to detect cancer, including PET scans, CT scans, MRIs, spinal taps, biopsies, ultrasounds, and x-rays. I have had pre-planned cancer detecting tests, tests scheduled at closer than normal intervals based on the results of the last one, tests done in urgent care based on unusual symptoms, and scans done during hospital stays.
But of all the cancer testing tools I have had, the easiest ones to cope with are the regularly scheduled ones. As a metastatic breast cancer patient with brain involvement, I have PET/CT scans every 4 months and a brain MRI every 2 months. Scans that are pre-scheduled and anticipated, I can plan for and know that they are just part of the horrible routine that is metastatic breast cancer; scan, hope for the best, treat, and hopefully repeat. However, I never know which ones of will show “stable” or “regression,” the two best things a metastatic patient can hear, or “disease progression,” the scariest scan outcome.
I definitely feel scanxiety, but for me, it usually doesn’t set it in until the night before a scan. I just try to distract myself with bad TV, call a friend, read a magazine, and calm my mind. When I arrive for my scan and while I am in the machine, I feel an unusual sense of calm. Somehow, I am just able to relax. I tend to focus more on my weekend plans, things I have to do at work, and more mundane things than the actual results.”
“Anyone touched by cancer knows about testing Scanxiety. You don’t want catastrophic thoughts running through your mind. It’s been a slow process of testing, fuzzy thinking, difficult concentration, pain, and symptoms piling on over the past few months. I’m mostly disappointed that I’m less productive.
It started with pain in my right ribs. Then there was more pain on my right breast that recently extended to my back ribs too. I’ve had X-rays, MRI without contrast, and most recently a bone scan. Each time I hear results of no mets I’m extremely grateful.
I’ve had early stage breast cancer twice, chemotherapy, radiation, lots of breast surgeries including a mastectomy with reconstruction. Everyone knows how passionate I am to see that we do everything to extend lives with quality of life and find a cure for Stage IV.
Just when I thought all was clear I got a call from my oncologist that after further inspection there is a suspicious spot on my spine at T8. Tomorrow they do an MRI with contrast on my spine and see if a biopsy is warranted.
We would like to extend out thanks on behalf of the MedRadJClub community to cancer patients who have written about their experiences of undergoing follow-up scans.
Dr Jill Bleiker is a retired clinical and academic radiographer who recently completed a PhD in compassionate patient care in diagnostic imaging. Although no longer in practice, she maintains links with her home university of Exeter in the UK and continues her involvement in the profession through occasional teaching, also writing and reviewing articles for publication in Radiography and has recently taken up a post as external examiner for a radiography programme in the UK. At some point she will have to let go, but for now she is keen to contribute to the profession which she has served for over 40 years and about which she still cares very deeply.
When I first began looking into the Francis Report at the suggestion of my supervisor, I was right at the start of a 5-year project which would culminate in one of my life’s dreams – a PhD (my life has already been longer than most of you reading this; I’m 63 – memo to all, it’s never too late..) Casting around, as you do at the beginning, there were so many questions I felt would be worth exploring. The only thing I knew for certain at this stage was that my study was going to be qualitative, not quantitative. It’s an oversimplification, but for me the difference between qualitative and quantitative research is whether your data consist of words or numbers – and I’m a words person through and through – battling with SPSS in my quantitative MSc taught me that… It’s a useful thing to learn about yourself if you are reading this and contemplating Master’s or Doctorate level work as it could save you a great deal of pain further down the long and winding research trail. Of course, many researchers combine quantitative and qualitative methods in their studies, and it helps to know about both, particularly if you are in any danger of having to teach research methods in your careers, but it can be handy knowing where your strengths lie.
This choice dictated the nature of my research question right from the start; not for me were numerical ideas of testing or measuring compassion, nor looking for ways of ‘increasing’ it in medical imaging (MI) practitioners, or anyone else for that matter – methodology aside for a moment can you imagine the harm to self-esteem, morale and motivation if we were expected to somehow raise our levels of compassion at work? Regarding them as though they weren’t compassionate enough is surely an unkind way to treat your staff, although the UK government at the time the Francis Report was published was quite keen on the idea (Campbell, 2013).
In any case, one of the first questions that came to my mind when all the furore about the Mid-Staffordshire so-called ‘scandal’ erupted, together with a deep disturbance at the idea of a deficit of compassion amongst healthcare staff was, “What is compassion anyway?” Everybody but me seemed to talk about it as if they knew what it was, and certainly in policy and protocol (which were issued with lightning speed post-Francis) and in the press, the question was not: ‘What is this compassion that is suddenly such a hot topic?’ but more: ‘What is wrong with healthcare practitioners and why aren’t they being compassionate towards their patients?’ with the subtext that healthcare staff were uncaring and selfish and really needed to up their game. Don’t get me started on that – oh, too late…
So, I headed off into the literature on compassion, starting with radiography and medical imaging… About ten minutes later that search had hit a brick wall so I moved on to the databases, principally Medline, CINAHL, PubMed, NHS Evidence, Web of Science, Google Scholar and the grey literature. Now I was getting somewhere; the nursing literature was awash with articles on compassion; sadly, much of it exploring ‘levels’ and devising scales with which to measure it, and you already know my thoughts on that. However, there was also much discussion about emotions, and in particular compassion fatigue and stress, which was a bit more interesting and something I could relate to; as a radiographer in the NHS all my working life, I know something of the pressures and demands placed upon MI practitioners day in and day out. A number of articles attempted to define or conceptualise it, but not many; still there was the inherent assumption that we all knew what we were talking about and that it meant the same thing to everyone. Other articles explored associated concepts such as empathy, kindness and care, and it became clear that there was a considerable lack of clarity as to their relationship with compassion and where the boundaries lay. Some attempted to devise and evaluate ways of teaching it, others looked for ways of recruiting for it. The articles I found particularly interesting, however, were those debating it; principally in the Philosophy and Medical Ethics literatures, especially those questioning the ubiquity of compassion in every case and situation – perhaps it’s me but I just love it when a still small voice speaks up amongst the cacophony and says, ‘Hang on, can we just think about this for a minute?’ Ramsay was one of only a few in healthcare who did just that (Ramsay, 2014).
So my research question gradually began to take shape, although I have to tell you that research questions are blooming slithery things, and mine slid around for absolutely ages before I could pin it down. And that was even after I had started attempting to answer it with my interviews, focus groups, and my incredibly fortuitous supply of data from the lovely folks at MedRadJClub, who picked up a paper summarising my trawl of the literature (Bleiker et al., 2016) and selected it for discussion at the May 2016 journal club discussion on Twitter. I will be forever grateful to those who made this selection, it was a pivotal moment in the course of my PhD.
Data collection was fun, daunting, interesting and logistically challenging, but I enjoyed talking to my participants; hearing their stories, and perhaps most interesting of all, the sense and meaning they made of them, which varied with each and every individual. I wondered how on earth I was going to be able to pull it all together and reconcile the sometimes stark differences between their interpretations of what had happened to them. As it turned out I didn’t need to; thematic analysis, my chosen method of analysing my data (Braun and Clarke, 2006) allows differences as well as similarities in data to be accommodated during the process of theme construction. As a lone researcher one of my problems particularly during data analysis was a disbelief in my own competence in what I was doing – imposter syndrome anyone? Nevertheless, I plodded on; the support from my supervisors has been absolutely central to the successful completion of this project and I can’t thank them enough for their kind and constructive encouragement and feedback.
The findings, once they began to take shape were sometimes disappointingly mundane – no-one is going to be surprised, nor award me a PhD for declaring that compassion is fundamental in patient care. However, that compassion is NOT something that every patient wants or needs came as more of a revelation – and immediately generated more questions, such as ‘how is a medical imaging professional supposed to tell who wants compassion and who doesn’t? Who just wants to be in, imaged and out again in the shortest possible time and who needs a bit more time and attention? When is compassion appropriate, and when is it patronising?
There were other surprises too; all patients want to be cared FOR, but not all expect to be cared ABOUT – some pragmatically acknowledged that Caring About is emotionally draining and simply not sustainable over every working day, week, month, year, particularly in a place where suffering, the essential component which provokes compassion is so prevalent. The apparently minimal cost in time or effort of the ‘little things’ often presented as simple and effortless such as small gestures like smiling and appearing friendly is not as low as first appears when seen in terms of the sustained demand on the emotional energy required of the radiographer. And that’s before you consider the workload pressures they are under too…
So patients seemed to be able to recognise something that some employers did not; namely that compassion is neither universal nor effortless – as one radiographer commented to me when describing their staff training and updating, “Too often Francis is used as a stick to beat us with.” See, there it is again, the suggestion that we are somehow falling short as individuals when it comes to caring for our patients with compassion. Something’s not right here, and that feeling was once described to me as the point of conception of a research project – when something BOTHERS you, that’s where to direct your research energies, and it was increasingly looking like I was bothering in the right place.
My interviews and focus groups were semi-structured; that is, my participants could answer questions in any way they wanted. This led to some interesting diversions, for instance, we not only talked about what compassion is, but also where it is. Most people tended to assume it resides within the person, but as we’ve now ascertained, it was assumptions that got me going with this project. Compassion may (or may not) exist as a personality characteristic (Peterson and Seligman, 2004), or perhaps in a particular location in the brain (Weng et al., 2013), but that again places the emphasis squarely on the individual and has the potential to draw us down the path of self-criticism and into a spiral of despondency and demotivation if there is a perception that it is somehow lacking. My research suggests that compassion can be found (or not found) in several places. It’s in the culture of a department or wider organisation; by culture I mean the language, attitudes and behaviours of all who work in it (including the leaders). In the gloomy, cold, hard and mechanistic environment of the x-ray room – as it appears to patients anxiously entering – we can metaphorically and literally shine a light (beam diaphragm) in the darkness, and if we can combine technical competence and knowledge with appearances of Caring About them, they perceive us as compassionate, professional practitioners. Interestingly and controversially, we don’t necessarily have to feel caring, but we can appear so by asking questions of the patient which not only allows them to feel that we are genuinely interested in (and therefore Caring About) them, but the bonus for us is that we can also gather information that helps us adapt our radiographic technique to their needs and limitations. Oh, and by the way, if you want to be seen as ‘Professional’ that’s how you do it; if on the other hand you are happy to be seen as a ‘technician’ or ‘button-pusher’, (patients’ words, not mine) just get the patient in, x-ray them and send them on their way with the minimum of dialogue.
Apart from the assumption that we should simply be more compassionate, the other thing that got my goat was the expectation that in order to cope with demand, MI professionals are supposed to cultivate resilience – now, within this lies a demand for acquiescence rather than resistance to a prevailing culture of individual responsibility in organisations focussed on market-driven healthcare like the NHS. Lake (2016) in a pithy challenge to the unquestioning acceptance of resilience as a desirable characteristic asked: “if you find yourself being hit repeatedly with a stick, do you want the source of your pain to offer you some padded clothing so they can carry on or maybe even hit you harder? Or, do you want them to stop beating you?” (Lake, 2016). Traynor made similar observations and proposed something he called Critical Resilience; that is, developing an understanding of, and getting together to talk about the political and policy decisions that influence the stressors in clinical practice (Traynor, 2018) and then asking some serious questions. Crucially, critical resilience is a social, not an individual phenomenon and you don’t develop it by yourself, you develop it by talking and thinking with others, then working out what to do as a group, not alone.
The upshot of this project was a series of recommendations; for further research to explore compassion more deeply, in particular its relationship with empathy and care; to explore ways of effectively incorporating compassion into education curricula (reflection and reflective practice are looking like a promising method). Recommendations for policy and protocol include exploring the language and culture of healthcare provision in order to highlight the business mentality driving healthcare today. How about we talk about ‘giving’ compassionate care, not ‘delivering’ it? How about we talk about ‘interpersonal’ skills not ‘soft’ skills? And how about changing the language in the SoR’s code of Professional Conduct by replacing the term Competency with Expertise? This subtle linguistic cue would affect public perceptions of radiographers as experts in a profession whose values include compassion as well as image production rather than as technicians performing mechanical tasks.
Whilst some of these findings were so mundane that I had difficulty presenting them for fear of ridicule, others were truly eye-opening and I had equal difficulty, only this time because of fear of backlash from those whose central belief is that compassion should be integral to individual practitioners and exhibited to every patient. To those people I can only say I’m sorry, but that this is what patients, medical imaging professionals and students told me – my thesis contains verbatim data in support of my claims if anyone wants to wade through all 99,132 words… A very supportive friend and colleague in her thesis also shared her nervousness at “sticking her head over the parapet” but in so doing gave me the little push I needed to do the same, thanks Ruth 🙂
Oh, there’s one other recommendation I want to offer, and this comes from my heart as well as my data analysis. It is to say to radiographers and MI professionals: “You’re doing a good enough job. Yes, it’s important to look for ways to improve and develop, but you’re not individually responsible for, nor can you practice with compassion unless the support is there. Listen with a questioning mind and that Critical Resilience-thing to policy and protocol statements exhorting you to show compassion to every patient and challenge the prevailing culture of speed, efficiency and throughput at the expense of patient care. Use the time saved by technological improvements such as digitisation to spend with patients rather than to speed throughput.
So, there you have it, my PhD is done and here I am, at the end of my journey. Or perhaps not – looks like if the MedRadJClub have their way, finishing the PhD will be just a staging post; can’t wait to see where we go next…
Acknowledgements
My thanks go to Amanda Bolderston and Nick Woznitza at MRJC; my supervisors Professor Karen Knapp, and Drs Sue Hopkins and qualitative guru Sarah Morgan-Trimmer and to Dr Ruth Strudwick for the ‘little push’. Finally, my gratitude goes to all the patients, students and MI professionals who so generously gave their time and of themselves to my project.
References
Bleiker, J. et al. (2016) ‘Compassionate care in radiography recruitment, education and training: A post-Francis Report review of the current literature and patient perspectives’, Radiography, 22(3). doi: 10.1016/j.radi.2015.12.008.
Braun, V. and Clarke, V. (2006) ‘Using Thematic Analysis in Psychology’, Qualitative Research in Psychology, 3, pp. 77–101.
Peterson, C. and Seligman, M. E. P. (2004) Character Strengths and Virtues A Handbook and Classification. Washington, D.C.: APA Press and Oxford University Press.
Ramsay, M. (2014) ‘Compassion and Caring: responding to Willis and Francis’, Nursing and Residential Care, 16(2), pp. 111–2.
Traynor, M. (2018) ‘Guest editorial: What’s wrong with resilience’, Journal of Research in Nursing, 23(1), pp. 5–8. doi: 10.1177/1744987117751458.
Weng, H. Y. et al. (2013) ‘Compassion training alters altruism and neural responses to suffering’, Psychological Science, 24(7), pp. 1171–1180. doi: 10.1177/0956797612469537.Compassion.
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