Dr. David Christmas – Should patients be patients?

12th November 2013

With the decision earlier this year by the Royal College of Psychiatrists to use the word ‘patient’ instead of ‘service user’, Dr. David Christmas takes a look at the reasons behind this choice and explores the wider issue of terminology in mental healthcare and service provision.

Quote graphicThe Royal College of Psychiatrists has decided to abandon the commonly-used term ‘service user’ and to use the word ‘patient’ in its official documentation (Minutes of Council, 22 February 2013). Members of Council concluded that the term ‘patient’ was non-discriminatory between mental and physical health and that the term ‘user’ was considered stigmatising by some people. But why should anyone care about the collective term for a group of people who access a particular specialty of the NHS?

Some people would argue that mental healthcare is not like other branches of medicine – it has unique qualities, a different set of values, and it requires a lexicon that is different to mainstream medicine. In the last two decades, mental health services have been dominated by themes such as ‘recovery’, which grew out of people’s experience of psychiatric rehabilitation and community support services, predominantly in 1980’s US healthcare. The failures of deinstitutionalisation and the emergent diversity of care providers meant that statutory services were no longer the primary providers of mental healthcare.

Early recovery-based dialogues were very much focused on the needs of the individual, and the language reflected a shift in perceived ownership of recovery: those with mental illness became empowered to take more control of their lives, their futures, and development of services.

Quote graphicUp until the 1970s, self-support groups continued to identify themselves as ‘patients’ [Note 1]. But the politically-charged movements of the 1970s and 1980s led to changes in how people defined themselves – patient groups became politicised and radicalised. Their alignment with a prevailing radical counterculture, and the experiences from involvement in other social movements on the political left were important in helping to drive the growth of the ex-patients movement.

Over time, recipients of care became users of services and the language reflected a new customer-focused approach. People were no longer ‘patients’: they were now ‘consumers’; although the term ‘consumer’ was originally intended to apply across all healthcare disciplines [2]. With this consumer focus there was a resistance to terms such as ‘patient’ and this term came to be viewed as reflecting passivity, subjugation, and disempowerment.

As mental health activism became more empowering, new terms such as ‘service user’, ‘survivor’, ‘client’, and ‘experts by experience’ became widespread and they continue to be used as preferred terms by various groups. Over time, however, mental health activism has become much less radical and it has been able to establish a dialogue with a more conservative political landscape [2]. One has to ask: is the language of radicalism and a potent statement of self-identity still required?

One problem is that it isn’t entirely clear where the mandate to use specific terms comes from and I would suggest, based on the evidence discussed below, that the majority of people with mental illness have not consented to the change in terminology. I would argue that the term ‘service user’ actually reflects the preference of a small but vocal minority with one foot still in the activism camp.

Quote graphicSo, what is the problem with using terms such as ‘service user’? First, there is considerable evidence to suggest that the terms in current use are not the preferred terms of the majority of people in contact with mental health services. In fact, when researchers have actually asked people what their preferred term is, it turns out to be ‘patient’ [3-10]. Whilst some studies found that there wasn’t a universal preference for ‘patient’, there was a clear statement about ‘service user’: only 10% of people willingly chose this term, irrespective of whether they are being seen by psychiatrists, psychologists, or social workers [4]. If the language doesn’t reflect choice, what is it actually reflecting?

Second, there are further problems with the apparent preference for ‘service user’. It commits the same perceived offence as ‘patient’ by defining someone only by their healthcare usage or a particular relationship with certain care providers. Since it is unique to mental healthcare, it automatically defines members of the group as having a mental illness. No other medical speciality has ‘service users’. A ‘patient’ could have any kind of illness, but a ‘service user’ is almost always someone with a psychiatric illness. Parity of esteem between mental and physical health becomes impossible unless we are all ‘patients’.

I believe the term ‘service user’ commits the cardinal sin of defining a group by their particular usage of a specific specialty, rather than simply being a user of healthcare (which most of us are). The irony is that by seeking liberation from paternalistic services and by creating a greater sense of autonomy, ‘service users’ have organised themselves into groups that are defined only by the presence of mental illness. In an attempt to ‘free’ people from what is perceived as an oppressive vocabulary, the terms chosen are those that most people who would belong to the group appear to reject when someone bothers to ask.

Quote graphicSo why might ‘patient’ be the preferred term? Outside of certain groups, ‘patient’ has few negative connotations and doesn’t signify passivity. The word ‘patient’ actually comes from the Latin patiens, meaning ‘to suffer’. With it comes familiar concepts such as the ‘doctor-patient’ relationship and ‘patient confidentiality’. Scotland recently introduced the Patient Rights (Scotland) Act 2011. Scotland didn’t introduce the Service User Rights Act as it didn’t see there being any difference – the same rights were to apply to all people accessing healthcare. The type of illness didn’t matter and it doesn’t reduce stigma to suggest that there needs to be a separate ‘bill of rights’ for ‘service users’. By using the term ‘patient’ the Scottish Government recognises that no other term could legitimately be associated with descriptions of ‘rights’ and ‘responsibilities’. No other term is so recognisable and commonly-used. But don’t we need to find a shared language, particularly in the run-up to health and social care integration? Social workers, for example, often resist the use of terms such as ‘patient’ arguing that they are too ‘medical’. Interestingly, people often overlook the critiques of alternative terms such as ‘service user’ that are coming from disciplines rooted in social science rather than medicine [11, 12]. Importantly, there is a recognition that by choosing ‘service user’, “…we ascribe status and meaning through the prism of one aspect of an individual’s life.” [12]

Only time will tell us how important the terms actually are. In a review of the history of terminology, Geoffrey Reaume commented that “what these various and often conflicting terms have in common is a desire to reshape both popular language and attitudes to a point where we see someone with a psychiatric history as being a person rather than a label.” [1]

Dr. David Christmas is a Consultant Psychiatrist in the Advanced Interventions Service in Dundee and is also the Financial Officer of the Royal College of Psychiatrists in Scotland.

References

1. Reaume G: Lunatic to patient to person: Nomenclature in psychiatric history and the influence of patients’ activism in North America. International Journal of Law and Psychiatry 2002; 25:405-426. http://dx.doi.org/10.1016/S0160-2527(02)00130-9
2. Rissmiller DOD, Rissmiller J: Evolution of the Antipsychiatry Movement Into Mental Health Consumerism. Psychiatric Services 2006; 57:863-866. http://dx.doi.org/10.1176/appi.ps.57.6.863
3. Deber RB, Kraetschmer N, Urowitz S, Sharpe N: Patient, consumer, client, or customer: what do people want to be called? Health Expectations 2005; 8:345-351. http://dx.doi.org/10.1111/j.1369-7625.2005.00352.x
4. McGuire-Snieckus R, McCabe R, Priebe S: Patient, client or service user? A survey of patient preferences of dress and address of six mental health professions. Psychiatric Bulletin 2003; 27:305-308. http://dx.doi.org/10.1192/pb.02-234
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8. Simmons P, Hawley CJ, Gale TM, Sivakumaran T: Service user, patient, client, user or survivor: describing recipients of mental health services. The Psychiatrist 2010; 34:20-23. http://dx.doi.org/10.1192/pb.bp.109.025247
9. Upton MWM, Boer GH, Neale AJ: Patients or clients? — a hospital survey. Psychiatric Bulletin 1994; 18:142-143. http://dx.doi.org/10.1192/pb.18.3.142
10. Wing PC: Patient or client? If in doubt, ask. Canadian Medical Association Journal 1997; 157:287-289. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1227829/
11. Cowden S, Singh G: The ‘User’: Friend, foe or fetish?: A critical exploration of user involvement in health and social care. Critical Social Policy 2007; 27:5-23. http://dx.doi.org/10.1177/0261018307072205
12. McLaughlin H: What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? British Journal of Social Work 2009; 39:1101-1117. http://dx.doi.org/10.1093/bjsw/bcm155