Rebecca Hunter is a Specialist Physiotherapist in Pain Management, NHS Highland and a PhD Student in the Department of Nursing and Midwifery, University of Highlands and Islands. Here, Rebecca shares her perspectives on how patient empowerment within pain management may be upholding the neoliberalist and capitalist structures in our society.
In the last twenty years or so, the Scottish government has changed their approach to managing long term health conditions. The traditional model, based on acute care and characterised by healthcare professionals being responsible for solving patient problems1 is not fit for purpose. It has been replaced by the concept of self-management in which patients are encouraged to take responsibility for their own health. This approach is rooted in ideas of empowerment and marks “… a shift away from people being passive, dependent recipients of care to a model that engages, empowers and supports people in a partnership approach with their healthcare professionals, carers and community”2. More recently, Scotland’s Chief Medical Officer’s annual report3 (2020/21) encouraged healthcare professionals to empower patients by supporting them to make informed choices about their care and become partners in healthcare decisions. While this collaborative approach can be seen as a positive move, delegation of responsibility could place additional demands on those who are already overburdened with the day-to-day experience of living with intractable pain.
For some, placing the burden of health care on the individual instead of the government is a form of neoliberalism4. Originating in the world of finance as a means of helping countries in economic crisis, neoliberalism describes polices that seek to minimise the role of the government, encourage privatisation, and increase the responsibility of the individual. In healthcare policy this emphasis on personal responsibility is increasingly evident. This may be in part as a result of the 2002 Wanless report5. The Wanless report was commissioned to evaluate the financial resources needed to meet the rising demands being placed on the National Health Service. The potential economic benefits of supporting self-management were highlighted in the report which stated that it could save the UK economy billions of pounds. It also noted that when people are not fully engaged in their own care, opportunities to reduce the healthcare burden are lost. This set the tone of health care policies in the years to come.
Embedded in the language of the Wanless report is a neoliberal sense of social and moral obligation on the part of the citizen to ‘choose’ to become a fully activated and responsible participant in the management of their own wellbeing. If a person ‘chooses’ to follow self-management programmes set out by government institutions they should be regarded by society as ‘good self-managers’. Conversely, if a person chooses not to be accountable for their own health they are ‘bad self-managers’, because they are adding to society’s burdens rather than helping them5. Evidence of this judgemental perspective can be seen in the descriptions healthcare professionals gave to participants’ in self-management programmes6. ‘Successful participants’ were described as having the “right attitude” inferring that unsuccessful participants had the ‘wrong’ attitude.
Moving away from the traditional ‘doctor-knows-best’ approach to one that promotes patient choice and autonomy marks a significant paradigm shift1. In this new approach, power in the healthcare relationship is (in theory) transferred from the healthcare provider to the patient, who in turn, becomes ‘empowered’8. Patient empowerment has been described as “the patient’s participation as an autonomous actor taking increased responsibility for and a more active role in decision making regarding his or her health”9. While it may be welcomed that the healthcare service is moving away from a traditional and paternalistic model to one characterised by partnership and collaboration, a degree of caution should be exercised before we, as healthcare professionals, congratulate ourselves on facilitating the creation of the ‘empowered patient’.
Leaving aside the debate as to whether healthcare providers do, in fact, relinquish their power in the therapeutic relationship, it should be acknowledged that taking an ‘active role’ in health care decisions and engaging with the healthcare system is burdensome and requires a degree of agency and social support that some may not have10. In the course of having to live with persistent pain there are likely to be periods when sufferers lack the cognitive capacity, energy, or motivation to engage in the skills necessary to self-manage their condition. At times like these, when the demands of being an autonomous self-manager exceed an individual’s capabilities, a person may feel abandoned by the healthcare service rather than empowered11. Furthermore, it may lead to victim-blaming when a person is unable to live up to the responsibility of taking care of their own health.
It has been argued that strategies which impose a moral responsibility on the individual for maintaining their own health care risk becoming exploitative rather than empowering12. Indeed, some patients are suspicious of the self-management agenda. Rather than seeing it as a policy to support their autonomy, self-management is viewed by some as a means by which the National Healthcare Service can plug gaps in service provision13. These suspicions gain weight when patients who feel they need additional support are not able to access timely and convenient care. The term ‘care left undone’ has been used to describe the lack of access to ongoing support due to resource constraints in the healthcare service11.
It is easy to see how political health care policies that advocate enhanced personal responsibility under the banner of patient empowerment could be viewed as being part of a neoliberal agenda. The ethos of empowerment risks being undermined by feelings of guilt, burden and suspicion on the part of the patient. To prevent empowerment from becoming a toxic term to people being asked to self-manage their persistent pain, healthcare practitioners have a responsibility to ensure this vulnerable population are not further marginalised. To achieve this, it is essential we recognise that people living with persistent pain (or any long-term condition for that matter) carry multiple burdens in managing their condition. There is the burden of living with daily pain, the burden of engaging with healthcare services and the burden of managing their day-to-day responsibilities. In order for it to be a true therapeutic partnership it is important that healthcare practitioners play their part in helping to share some of this burden. This means making sure patients and their support network have the skills and resources they need to cope and are given ongoing support as and when it is needed. Paradoxically, the reassurance that comes from our continued presence is more likely to result in a truly autonomous and empowered patient.
Rebecca is on Twitter @Hunter_Physio & @RealBackstory
References
1. Anderson, R.M. and Funnell, M.M., 2005. Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm. Patient education and counseling, 57(2), pp.153-157.
2. Schofield, D., 2017. Proposal to develop Support & Information Services in Clyde Sector: Clyde Sector Directorate Meeting March 2017. [online] Available from https://www.stor.scot.nhs.uk/bitstream/handle/11289/579838/Support++Information+Service++Clyde+Sector+(final).pdf;jsessionid=BC5312CD31DA30BC37F51B215E83BD10?sequence=1 [09/11/21]
3. Scottish Government, 2021. Chief Medical Officer - annual report: 2020 to 2021. [online] Available from https://www.gov.scot/publications/cmo-annual-report-2020-21/ [09/11/19]
4. Ayo, N., 2012. Understanding health promotion in a neoliberal climate and the making of health conscious citizens. Critical public health, 22(1), pp.99-105.
5. Wanless, D., 2002. Securing our future health: taking a long-term view. [online] Available from https://www.yearofcare.co.uk/sites/default/files/images/Wanless.pdf [09/11/21]
6. Ellis, J., Boger, E., Latter, S., Kennedy, A., Jones, F., Foster, C. and Demain, S., 2017. Conceptualisation of the ‘good’self-manager: A qualitative investigation of stakeholder views on the self-management of long-term health conditions. Social Science & Medicine, 176, pp.25-33.
7. Hughes, S., Lewis, S., Willis, K., Rogers, A., Wyke, S. and Smith, L., 2018. How do facilitators of group programmes for long-term conditions conceptualise self-management support?. Chronic Illness, p.1742395318792068.
8. Lee, M. and Koh, J., 2001. Is empowerment really a new concept?. International journal of human resource management, 12(4), pp.684-695.
9. Schulz, P.J. and Nakamoto, K., 2013. Health literacy and patient empowerment in health communication: the importance of separating conjoined twins. Patient education and counseling, 90(1), pp.4-11.
10. May, C.R., Eton, D.T., Boehmer, K., Gallacher, K., Hunt, K., MacDonald, S., Mair, F.S., May, C.M., Montori, V.M., Richardson, A. and Rogers, A.E., 2014. Rethinking the patient: using Burden of Treatment Theory to understand the changing dynamics of illness. BMC health services research, 14(1), pp.1-11.
11. Greaney, A.M. and Flaherty, S., 2020. Self‐care as care left undone? The ethics of the self‐care agenda in contemporary healthcare policy. Nursing Philosophy, 21(1), p.e12291.
12. Kugelmann, R., 1997. The psychology and management of pain: gate control as theory and symbol. Theory & Psychology, 7(1), pp.43-65.
13. Gordon, K., Rice, H., Allcock, N., Bell, P., Dunbar, M., Gilbert, S. and Wallace, H., 2017. Barriers to self-management of chronic pain in primary care: a qualitative focus group study. Br J Gen Pract, 67(656), pp.e209-e217.
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