I discovered last night that my abstract for a one-hour lecture at a conference had been recommended for a poster presentation by the two reviewers in the blind peer review process. In hindsight, I thought that my abstract might have been a bit too tongue-in-cheek and hadn't explained the aims of the presentation in enough detail, and that this explained the recommendation that it be accepted as a poster. I drafted an email to the chair of the scientific committee, asking them to reconsider, and offering to rewrite the abstract. I haven't sent it yet, and am not sure that I will.
Then I checked, and this was the title and abstract that I submitted:
Improving patient-centred care: lessons from the real world
Abstract
Patient-centered care leads to a higher sense of patient engagement,
which can improve perceived health outcomes. This presentation reports
on the results of an unplanned experiential single-case study
involving a neuropsychologist who underwent multiple surgical and
medical procedures and admissions over an 18-month period. The
qualitative data collected illustrates some of the known issues in
clinical judgement and decision-making such as confirmatory bias,
pattern recognition, and rapid diagnostic foreclosure (jumping to
conclusions). Retrospective analysis reveals how routine clinical
practices might result in a perception of impersonal, rather than
patient-centred, care. The presentation considers ways for clinicians
to avoid common pitfalls in decision-making processes, and discusses
how to achieve better patient-centred care in clinical practice.
Abstract
Patient-centered care leads to a higher sense of patient engagement,
which can improve perceived health outcomes. This presentation reports
on the results of an unplanned experiential single-case study
involving a neuropsychologist who underwent multiple surgical and
medical procedures and admissions over an 18-month period. The
qualitative data collected illustrates some of the known issues in
clinical judgement and decision-making such as confirmatory bias,
pattern recognition, and rapid diagnostic foreclosure (jumping to
conclusions). Retrospective analysis reveals how routine clinical
practices might result in a perception of impersonal, rather than
patient-centred, care. The presentation considers ways for clinicians
to avoid common pitfalls in decision-making processes, and discusses
how to achieve better patient-centred care in clinical practice.
It was a little tongue-in cheek, but it explained what I meant to talk about, and while confessing to an unplanned, informal, retrospective analysis of qualitative data collected from a single-case study may have made my abstract seem of less scientific merit than that from all the other more conventional hypothesis-driven, planned, quantitative research involving groups of clinical samples and controls, I had hoped that the reviewers might see some merit in engaging in discussions about clinical practice, and that they would appreciate the difficulties of presenting and sharing such information in a poster format.
I expressed my distress on Facebook last night (I wrote that I felt shattered by the rejection - not a cool, or professional confession to make). I don't want to write to the scientific chair of the conference because we'd previously discussed my ideas by email and I thought they were receptive. My Facebook buddies thought the presentation sounded invaluable. While a conference presentation would be more cost- and time-efficient for me, I might offer to give it as a professional development activity to small and receptive audiences around Australia. That would give me a chance to interact more closely with the audience, as well as giving me a reason to travel interstate. However, I don't fancy the prospect of offering my presentation and being rejected again. I've already suggested it to my state colleagues about a month ago and received no response in return. It's safer to share it my thoughts on my blog.
Yes, it's good that the abstract wasn't rejected outright, but I think it would be difficult to give the presentation in less than an hour, and almost impossible to present what I wanted to talk about as a poster. Posters are more suited to data that can be presented through the use of figures and tables, and succinct text summaries of introduction, aims, method, results, and conclusions. My presentation isn't suited to this format, it's intended to share the insights and experiences I've gained as a conversation with my colleagues. I can easily talk for two or three hours about what I've learned, it would be hard to condense it into 30 minutes. If I had to, the best way to summarise it in a poster would be through the use of headings and graphics.
- The Fantasy: Idealised image of the patient at the centre of clinical care.
- Reality for common conditions: patients as anonymous boxes on an assembly line.
- Reality for patients with highly aggressive and incurable conditions: patients in open coffins on assembly line, with surprised doctor asking "so you're still alive then?"
- Reality for clinicians who want to share their personal insights into the healthcare system with their peers: people in an auditorium, or a room full of people looking uncomfortable, with their backs turned on the speaker, with only a few facing the speaker with interest.
I hate to say it, but the root cause of this sense of disappointment that clutches my guts is the fact that I've recently been described as a "long-term survivor of GBM" 10 months after my surgery. Ten months doesn't seem very long to me, protected in my hopeful bubble of optimism that I will survive for decades. Normally, one could resubmit a paper for future conferences, but being objectified as a a "long-term survivor" makes me realise that I don't know if I'll still be around next year, or if I'll be able to consider any form of presentation at that time. Of course I want to be here, and I hope to be even stronger and more capable than I am at the moment, but this whole thing makes me confront the reality that my future is uncertain, and that while I can plan for future events, like any normal person, my brain tumours mean there's a greater possibility that my future will be prematurely truncated. Which makes me all the more eager to share my knowledge and insights while I can.
So rather than attending a conference and presenting a cartoon-style poster that is more punchy than a one-hour oral presentation, I'll continue to write this blog, and consider offering my presentation to small groups who are interested in learning from my experiences. I'd like to go to the conference to catch up with old friends and colleagues, but I don't have any need for the PD points because I am on a non-practicising registration.
The discomfort of clinicians in hearing first-person accounts of experiences in the healthcare system is a major symptom of the discrepancy between ideals and reality of patient-centred care. Clinicians are taught to maintain an objective distance between themselves and their patients, it's vital for emotional survival and self-care when confronted with illnesses and distress, and for establishing and maintaining professional boundaries in our relationships with clients. Clinicians may believe that they're engaging in patient-centred care even if they don't seek or obtain feedback on their practices from patients. My experiences have taught me that what I thought was client-centred care was probably a poor approximation. Clinicians' training doesn't teach us how to deal with patients who step out of their boxes and express their thoughts, perceptions, and desires without invitation. We listen with surprise or astonishment, try to deal with their statements, and then close the files as quickly as possible, glad that most patients don't attempt to violate the rigidly constrained roles that we give them. Clinicians who step out of the boxes assigned to them as patients are violating two of the boundaries that have been developed to help clinicians maintain their sense of dispassionate objectivity. It's probably very confronting for clinicians to be exposed to fellow clinicians who want to share their first-hand experiences of being patients, or even to feel comfortable around those who have visible signs of illness or disability. It's as if we hope that being a clinician will somehow make us immune from disease or impairment, which we can only deal with comfortably in the clearly defined roles and scripts of the professional setting. To be confronted by a professional colleague who wants to talk to their peers about their personal experiences does not compute in the highly depersonalised, objectified world that we expect patients to inhabit. It's a boundary violation on two fronts.
It's sad and ironic that clinicians all have family and friends who have suffered ill health, and we can talk comfortably to them in private, but we don't know how to deal with a colleague outing themselves as having suffered illness in a professional situation. I'm not just talking about myself here. I've seen it in other settings We're even uncomfortable with having "consumers" attending professional meetings. Where consumers are invited to mental health meetings, they are often given a chaperone to ensure that they stay on topic and don't derail the agenda. High-functioning consumers with dementia who attend dementia conferences cause a flurry of silent diagnosis-checking amongst the clinicians, who can't help but compare the presentation with the patient's self-reported diagnosis. I know, I've been guilty of it myself.
Self-disclosures from fellow clinicians are uncommon, unexpected and probably violate unspoken social norms and mores. For such a colleague to want talk about what they've learned about their own clinical practice from their personal experiences might be doubly confronting, and challenges the very foundations of professional behaviours that allow us to maintain a protective sense of distance between ourselves and our patients, the distance that we think is necessary to maintain our professional objectivity. It's unfortunate that such self-disclosure creates cognitive dissonance between how to perceive the clinician/patient. They are still a clinician, but they're voluntarily disclosing their health issues to other clinicians, without the required referral letter. It's like the person asking for a professional opinion at a cocktail party - we try to be polite and informative in a general sense. We don't have a defined professional relationship with that person, so any advice we give has to be given cautiously and with a disclaimer that they should talk to their doctor about it. Or maybe I'm overgeneralising here, and assuming discomfort? My allied health colleagues have seemed fascinated and receptive to hearing my story and the insights it has provided me when I've spoken to them. I don't know what the reviewers were thinking in evaluating my abstract.
Self-disclosures from fellow clinicians are uncommon, unexpected and probably violate unspoken social norms and mores. For such a colleague to want talk about what they've learned about their own clinical practice from their personal experiences might be doubly confronting, and challenges the very foundations of professional behaviours that allow us to maintain a protective sense of distance between ourselves and our patients, the distance that we think is necessary to maintain our professional objectivity. It's unfortunate that such self-disclosure creates cognitive dissonance between how to perceive the clinician/patient. They are still a clinician, but they're voluntarily disclosing their health issues to other clinicians, without the required referral letter. It's like the person asking for a professional opinion at a cocktail party - we try to be polite and informative in a general sense. We don't have a defined professional relationship with that person, so any advice we give has to be given cautiously and with a disclaimer that they should talk to their doctor about it. Or maybe I'm overgeneralising here, and assuming discomfort? My allied health colleagues have seemed fascinated and receptive to hearing my story and the insights it has provided me when I've spoken to them. I don't know what the reviewers were thinking in evaluating my abstract.
How would we deal with patients who walked in off the street and wanted to talk about their experiences, who are offering to help us, rather than requesting our assistance? We have no model or training for dealing with such a situation. It would be even more confronting if the patient was a colleague who wanted to share the insights they've gained with us. It reverses the roles in the standard clinical interaction, and any previous professional relationship that may have existed. The clinician is being offered the chance to reflect on their own practice and to develop insight into what they do and how it affects patients and carers through hearing about the insights of another practitioner, who they may have previously known and respected. This challenges the nature of the former peer relationship. I'm not a clinical psychologist, partly because I could see that not many people would voluntarily seek to develop insight into themselves unless they were suffering considerable distress or anxiety from life events, or disabling mental health problems, and that the work of a clinical psychologist would therefore be time-consuming and difficult. (many people in my philosophy class had problems with Plato's proposal "that the unexamined life is not worth living.")
Neuropsychology appealed to me because it was based on brain structure and functioning that can be measured and understood with scientifically validated and reliable assessment tools. I wanted to help people afflicted by stroke, dementia, head injury, or other neurological conditions to understand the nature of their conditions and the extent of their difficulties, and to help them cope with their changed circumstances through education, individualised recommendations, and support. Neuropsychology doesn't usually focus on or involve much of the messy business of acknowledging and dealing with psychological defences and dysfunctional coping styles, although much of our work involves identifying mood and anxiety issues that the patient may now be aware of. The interventions we use are largely based on the person's cognitive and behavioural strengths and weaknesses, and the majority of Australian neuropsychologists refer to clinical psychologists for assistance with complex psychological issues, though some of my colleagues are also involved in other forms of psychological interventions. In neuropsychology, there are differing degrees of certainty about the presence and degree of cognitive or behavioural impairment or change, and the patients and their carers want understanding and answers. Fairly objective, achievable, and straightforward for the neuropsychologist, who doesn't generally have to worry too much about engaging the patient in self-reflection, development of insight, or recognition of defence mechanisms or maladaptive behaviour patterns that have developed over a lifetime. I guess it's shouldn't be disappointing to me that a neuropsychology conference doesn't know what to do with a presentation like mine that proposes we examine how patient-based care seems to a clinician going through the health system. (Oh no, she might talk about what it's like to recover from brain surgery! How can we ever look at her the same way again if we know what it was like for her to be disoriented, confused, forgetful, and irritable? Too much information, cannot compute. Delete, delete!) Or, perhaps I'm over-thinking this, I cannot know what the reviewers were thinking.
Neuropsychology appealed to me because it was based on brain structure and functioning that can be measured and understood with scientifically validated and reliable assessment tools. I wanted to help people afflicted by stroke, dementia, head injury, or other neurological conditions to understand the nature of their conditions and the extent of their difficulties, and to help them cope with their changed circumstances through education, individualised recommendations, and support. Neuropsychology doesn't usually focus on or involve much of the messy business of acknowledging and dealing with psychological defences and dysfunctional coping styles, although much of our work involves identifying mood and anxiety issues that the patient may now be aware of. The interventions we use are largely based on the person's cognitive and behavioural strengths and weaknesses, and the majority of Australian neuropsychologists refer to clinical psychologists for assistance with complex psychological issues, though some of my colleagues are also involved in other forms of psychological interventions. In neuropsychology, there are differing degrees of certainty about the presence and degree of cognitive or behavioural impairment or change, and the patients and their carers want understanding and answers. Fairly objective, achievable, and straightforward for the neuropsychologist, who doesn't generally have to worry too much about engaging the patient in self-reflection, development of insight, or recognition of defence mechanisms or maladaptive behaviour patterns that have developed over a lifetime. I guess it's shouldn't be disappointing to me that a neuropsychology conference doesn't know what to do with a presentation like mine that proposes we examine how patient-based care seems to a clinician going through the health system. (Oh no, she might talk about what it's like to recover from brain surgery! How can we ever look at her the same way again if we know what it was like for her to be disoriented, confused, forgetful, and irritable? Too much information, cannot compute. Delete, delete!) Or, perhaps I'm over-thinking this, I cannot know what the reviewers were thinking.
A dear friend who is married to a general practitioner told me that the best part of medical conferences is often where a doctor gets up and talks about their experiences of being a patient in the healthcare system. My friend said such presentations are often uncomfortable and confronting for the audience, but that they can also be the best events in the conference, and evoke valuable self-reflection and evaluation amongst the audience. It seems that this kind of presentation is uncommon at neuropsychology conferences, where we are still more accustomed to scientific papers, literature reviews, and workshops designed to update skills and knowledge.
Maybe I was corrupted back in Philosophy 1A, when we studied Plato and debated his proposal that "the unexamined life is not worth living." I've been comfortable with a certain level of self-reflection since then, but never had the courage to see a therapist to take it to a higher level when things weren't working out well, and I've never offered to share my self-reflections with my peers before (other than sharing my 'musings of a neuropsychologist with too much time on their hands' via email list and on my neuropsychbookworm blog earlier this year). When I was a lecturer, I used to reflect on my own clinical practice quite regularly in my presentations, and feedback from the students suggested that it gave them useful insights into clinical practice, and was a valuable modelling of self-reflection.
At least blogging allows me an unhindered forum for altruistic self-disclosure. I believe I have much to share that will be of value to other health professionals, and I want to share it for the benefit of everyone. Attempting to do it probably makes me more uncomfortable than it would make an audience, as it involves risking to my professional reputation in deviating from the clearly prescribed path of scientific objectivity, and it also involves risking feelings of rejection, even though I know that rejection of my proposal isn't a rejection of me as a person. So I'm so grateful for blogging. It allows me to share my thoughts without the need for blind peer review, and to reach an audience who are interested and open to being exposed to ideas that may cause discomfort. I've put myself out in the open. I'd appreciate any constructive comments or feedback via email at fiona dot bardenhagen at gmail dot com - I won't necessarily be able to respond to every email, but each one will be appreciated.
