As an allied health professional and educator in the health and social care sector, I interview a lot of would-be health and social care professionals. Almost without fail, these university applicants talk about caring and their desire to work with people, of communication skills and understanding. In due course the successful students study hard to achieve their professional registration. The academic Caroline Ellis-Hills and her team have written that rehabilitation is about helping people to live a life not dominated by their disability; a shift from the traditional medical ‘fix-it’ models. With professional registration comes the opportunity to use newly acquired knowledge to support people to live such lives. This privileged opportunity is one of both position and potential power. In policy, education and as health and social care professionals, we talk about being ‘patient-centred’; in reality and borne out in the research literature, we may be falling short in this aspect of our practice. It is my observation that many therapists, including me, readily slip into a ‘gift’ model of rehabilitation; one where as a product of our knowledge, we tend to hold the power and suggest what is best in the light of available evidence. As a result we tend to dominate and drive rehabilitation and in turn lose sight of the person at the centre. Again the research literature reflects this. For some years now, William Levack and his colleagues have looked in detail at what happens in goal setting; a central tenet of rehabilitation practice. They have observed that while therapists talk about person-centredness and empowerment, when there is disagreement between patients and teams about which goals to set, patient preferences seem to get lost. Regrettably, I recognise my own practice in Levack’s observation of therapists steering a patient to set less ambitious, more realistic goals; a goal Levack and his colleagues call a ‘privileged goal’. In the past I have rationalised this as therapeutic, avoiding raising unrealistic expectations and supporting the development of insight, but I am increasingly ill-at-ease with this element of practice and it is fast joining my list of behaviours and practices to eliminate in rehabilitation along with the over used and thinly considered phrase: ‘no rehab’ potential’. Furthermore, I’m asking myself (and my students), what’s the more normal behaviour; setting a realistic goal or setting an unrealistic goal? Hands-up …. I set a lot of unrealistic goals … for myself, over and over again …. so, I don’t really demonstrate very good learning either. Is this a health condition?
It’s reassuring that the research literature is documenting these phenomena and encouraging practitioners to think about practices that have become so embedded that we have ceased to examine what is really happening in these powerful interactions. However, notwithstanding the contribution of evidence based practice in recent years, we need to be wary of being too dependent on the research literature. For me, the most powerful prompt to re-evaluate my practice came from two ad hoc personal interactions. The first with a social work colleague who many years ago told me: ‘when someone is told they have ‘no rehab’ potential’, they feel like they have scored ‘null points’ for life’. The second was hearing the experiences of my school friend’s husband, David. David had an aggressive brain tumour in 2005, (http://www.braintumourresearch.org/david-grant_725 ). When diagnosed he was told his life expectancy was about 15 months. A decade later, David is still here. He’s only recently retired from fulltime work and remains both independent and active, contributing to student education, cancer charity and policy work.
When I first heard David talking about his goals I remember worrying that he lacked insight about the gravity of his condition. David’s goals were big, ambitious and emotionally laden; things like, ‘I’m going to walk my daughter to school on her first day at school’. As a friend, I struggled with how to react. I felt empathy for any therapists who might have been trying to rein him in and recalibrate his expectations. Actually, it was me who had to recalibrate; David did not and does not lack insight. He is absolutely realistic about the gravity of his condition, but this does not mean he cannot also be active and hopeful. The importance of supporting and nurturing hope features little in health and social care education but is an area gathering attention. Returning to the research for a moment, there’s evidence that, just like David, patients can remain hopeful but equally grasp the seriousness of their condition. Bright and her colleagues reviewed the literature about hope in relation to stroke and suggest that while there’s some evidence that health and social care professionals can have a positive role in fostering hope, they are just as likely to dash hopes, to justify this as setting realistic expectations and what’s more, seldom see fostering hope as their role.
Clearly there is a balance to be struck, but I have always thought that there is huge merit in the phrase David recalls his oncologist using: ‘David, you have a very nasty brain tumour, but a small minority of people do very well; join them!’. After all, how do the health and social care professionals ‘know’ what a realistic expectation is? For a couple of decades now we have been encouraged to look at the evidence, the statistics and empirical research; to embrace evidence based practice. There is of course value in such evidence, but it doesn’t tell us the whole story. David, for example, is excluded from brain tumour survivor research because …… well, he’s survived too long! The occupational therapist and writer in the field of rehabilitation, Karen Whalley Hammel, encourages us to tease apart the ties between knowledge and power. As far back as 1999, Coulter wrote in the British Medical Journal: ‘….while the professional is knowledgeable about the individual’s condition, only service users and carers know about their experiences, circumstances, habits, preferences and values; the partnership approach to care should be based on mutual respect.’ There are echoes here of George Kelly’s characterisation of two experts in the room. A decade and a half later we still talk about patient-centredness as if it is a new concept and campaigns such as Kate Granger’s (http://hellomynameis.org.uk/), suggest there is still a way to go and that there are small things that can make an enormous difference.
I’m encouraged that increasingly I see issues of hope and person-focus thoughtfully discussed by both therapists in training and those more established in practice and I find myself thinking: ‘Is an experienced practitioner the one with the most up-to-date disease-specific research knowledge or the wise one, open to possibility, practising their craft with care and respect and above all with a focus on the individual?’
Senior Lecturer, Rehabilitation
Faculty of Health and Social Care Sciences
St George’s, University of London
Sadly – not all academic journals are open access yet, but for those who are interested here are the references for any literature I have cited:
Bright, F.A.S., Kayes, N.M., McCann, C.M. and McPherson, K.M. (2011) Understanding hope after stroke: A systematic review of the literature using concept analysis. Topics in Stroke Rehabilitation. 18(5): 490-508
Coulter, A. (1999) Paternalism or partnership? Patients have grown up – and there’s no going back. British Medical Journal, 3 19: 719–20
Ellis-Hills, C., Payne, S. And Ward, C. (2008) Using stroke to explore the Life Thread Model: An alternative approach to understanding rehabilitation following an acquired disability. Disability and Rehabilitation, 30(2): 150-159
Kelly, G. (1963) A theory of personality: The psychology of personal constructs. New York : Norton
Levack, W., Dean, S.G., Siegert, R.J. & McPherson, K.M. (2011) ‘Navigating patient-centred goal setting in inpatient stroke rehabilitation: How clinicians control the process to meet perceived professional responsibilities’, Patient Education and Counseling. 85(2): 206-213
Whalley Hammel, K., (2006) Perspectives on Disability and Rehabilitation: contesting assumptions; challenging practice. London: Churchill Livingston