While ‘service user’, ‘customer’ and ‘client’ are still ubiquitously used to describe people’s relationship with social care, ‘patients’ remains our default term for referring to people’s relationship with the NHS and ‘health’, and it is, as you might expect, another word that makes me go hmmm.

Here’s why…

Patient-centred

Recently I saw a copy of a hospital discharge form. It was 14 pages long and had 202 questions. ‘What are the patient’s goals and wishes?’ was question number 199. Effectively the final question, because the remaining three asked the name and job title of the person completing the form, and the date of completion. All the other 198 questions were about what was wrong with ‘the patient’.

What was the matter with them.

‘Patient-centred’, ‘person-centred’ and ‘personalised’ approaches aim to flip this narrative – and practice – from ‘what’s the matter with you?’ to ‘what matters to you?’. So instead of a patient with symptoms that need treating, you’re seen as a ‘whole person’ with capabilities and potential. Instead of being told what’s wrong with you and how your ‘health needs’ will be met by a doctor who knows best, you have the information and support you need to make informed choices and decisions. Instead of knowledge and power and responsibility resting solely with ‘professionals’, all are shared in partnership. Instead of being a passive recipient of treatment, you’re an active partner in your health and care.

But if we pay attention to the language, it’s clear that ‘patient-centred’, ‘person-centred’ and ‘personalised’ are largely just ‘buzz words’, painting on a new layer of gloss rather than addressing pervasive attitudes and power dynamics beneath the surface.

Receiving medical treatment

The dictionary definition of ‘patient’ is “a person receiving or registered to receive medical treatment” – originating from the Latin ‘pati,’, meaning ‘to suffer’ or ‘to endure’.

The term is therefore undeniably associated with medicating fixing treating curing – not the person but their illness or disease or ‘condition’.

“I think my tumour had been treated very well – and for that I am extremely grateful… The one thing I am still not sure about is if I, Sue, as a person, a human being, had been treated as well as my tumour.”

Sue Robins [1]

Like ‘service user’ perpetuates an unhelpful connection between social care and services, ‘patient’ cements the link between health and medical treatment. It means people are identified primarily in relation to their illness or ‘condition’. Dementia patient. Stroke patients. It means we focus on health as “the absence of disease or infirmity”, rather than “a state of complete physical, mental and social wellbeing” [2] And it means we still view people through a deficit-based lens, and focus on the ‘cure’, rather than on the wider determinants of health and wellbeing.

The other meaning of the term is of course “able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious. Be patient, your time will come.” [3]

Synonyms for the noun include ‘invalid’ – defined in the dictionary as “one who is sickly or disabled” and meaning “not valid.” “Logically inconsequent.” “Null and void.” [4]

Synonyms for the adjective include ‘uncomplaining’. ‘Resigned’. ‘Tolerant.’ ‘Serene.’

Both the noun and the adjective imply passivity. Receiving treatment. Being looked after. Being cared for. And doing so without complaint. Without question. Without really being visible at all.

‘The one in bed 7’. ‘Day case’. ‘Chair 4’.

An explicit power dynamic is baked in through this language. In contrast to the patient patient, there is a ‘professional’. Doctor. Consultant. Therapist. An identifiable human being with status and expertise. Legitimate. Important. In charge. Valid.

Phrases like ‘my patient’, ‘our patients’ and ‘under the care of…’ expose this power dynamic, and the medical language used cements it. ‘Patient records’ and letters to ‘patients’ are filled with jargon and acronyms. Signs in hospitals say ‘cardiology’, ‘dermatology’, ‘haematology’, ‘radiography’… Why not ‘heart’, ‘skin’, ‘blood’, ‘x-ray’?

Doctor knows best

The ‘doctor knows best’ days are, in theory, well behind us. The narrative of ‘personalised care’ focuses on people having the information we need to make informed choices and decisions.

As well as the knowledge we have about our own bodies, our own physical and mental health, we have access to a world wide web of information, and huge numbers of people with similar diagnoses and conditions through peer support networks and online communities. A vast and valuable pool of learning, where we can share symptoms and strategies and suggestions.

Despite this being an opportunity to share lived and learned experience, with ‘patient’ and ‘clinician’ meeting as equals, it doesn’t always work out like that. Indeed, it’s possible to buy a mug – in fact a variety of mugs – baring the message ‘please do not confuse your Google search with my medical degree’ – a smug and patronising statement of superiority.

Happily, there is also a popular meme flipping that narrative:

Doctor: Don’t confuse your Google search with my 6 years at medical school.

Patient: Don’t confuse the 1-hour lecture you had on my condition with my 20 years of living with it.

[5]

Difficult patients

So much of the language used about ‘patients’ is filled with suspicion and blame, exposing the prevalence of the ‘doctor knows best’ thinking and practice.

A patient’s reason for contacting their doctor is referred to as a ‘complaint’, suggesting from the outset they’re being awkward.

Doctors record that patients ‘claim’ or ‘deny’ symptoms – implying they’re not really telling the truth or have something to hide.

And if medication doesn’t relieve or cure, instead of suggesting the treatment hasn’t worked for the person, patients are described as ‘not tolerating’ the drugs or ‘failing treatment’ or ‘failing to respond’.

If patients question or disagree with or dispute clinicians, they’re labelled ‘difficult’ or ‘challenging’.

If they don’t ‘behave’ in line with the anticipated ‘pathway’ or ‘journey’ or ‘flow’ through the ‘system’, they’re blamed as ‘frequent fliers’, ‘bed blockers’, ‘revolving door customers’, ‘failed discharges’.

And patients choosing an alternative route are labelled as ‘refusing’ treatment.

As Caitríona Cox and Zoë Fritz explain in their article on medical language, “patterns of language that connote objectivity and credibility to physician findings while questioning the reliability of patients’ experiences hint at an ongoing lack of respect for patients – a poor foundation for power sharing in therapeutic relationships.” [6]

Brave patients

Military metaphors are even more prevalent in health care than in social care.

Doctors and nurses work on the ‘frontline’ – ‘a place where fighting happens’ – battling disease / ‘demand’ / paperwork / ‘difficult patients’ / exhaustion / stress / abuse / ‘the system’ / the government.

Healthcare workers are ‘heroes’, celebrated for their bravery and sacrifices – particularly during the Covid pandemic. A glowing rhetoric of recognition and gratitude normalising unprecedented risks, perpetuating a dangerous ‘super-human’ perception, and masking a lack of adequate protection and reward.

Diseases ‘invade’ and ‘attack’, and treatments are ‘aggressive’. We ‘wage war’ on dementia and ‘fight’ cancer, aiming to ‘defeat’ them both.

And ‘brave’ patients ‘battle’ illness, ‘fight’ infection, ‘beat’ disease. There are ‘survivors’ and ‘those who lose the fight’ – implying there is choice and suggesting that people who ‘surrender’ to illnesses didn’t battle hard enough and were ‘defeated’.

The language of war trampling and triumphing over a narrative of compassion, empathy, healing, and humanity.

Patients and service users

The NHS has ‘patients’ and social care has ‘users’, and phrases including ‘patients and service users’ and ‘patients and users of care’ are frequently employed to acknowledge this relationship.

These terms appear in sentences that also refer to ‘people’ or ‘citizens’ or ‘the public’. “Patient and public satisfaction”, “from the perspective of patients, service users, and citizens”, “feedback from people, patients and their families”. Obviously, this terminology aims to distinguish people receiving ‘treatment’ from people who aren’t, but it also separates ‘patients’ and ‘service users’ from an identity associated with citizenship and rights.

You’re either a ‘person’ or a ‘patient’. A ‘citizen’ or a ‘service user’.

People are not always patients, but patients are always people. Too often the language – and practice – fails to acknowledge this.

Social care patients

The ‘patient’ label is often applied to people drawing on care and support, particularly in relation to ‘integration’ between health and social care.

“The integration white paper sets out a vision for an integrated NHS and adult social care sector which will better serve patients and staff.”

Department of Health and Social Care [7]

The continued use of deficit based and medicalised language (‘disorder’, ‘defect’, ‘deficiency’, ‘at risk of’, ‘afflicted by’, ‘suffers from’…) in relation to disabled people also reveals just how prevalent ableism is, showing we still haven’t left behind the perception of disabled people as ‘invalids’, who must be fixed, treated, cured, or rehabilitated.

Patient participation and involvement

Activated patients.

Engaged patients.

Empowered patients.

These terms are all used interchangeably to refer to ‘patients’ who take an ‘active’ role in ‘managing’ their own health and healthcare, and who ‘participate’ in the wider design, planning, delivery, and evaluation of health services.

And yup, each one of these terms makes me go hmmm, because despite their attempts to indicate a shift in power, they expose exactly where the power lies.

The phrase ‘activated patient’ particularly makes me squirm. ‘Activate’ means to make something start working. We activate credit cards. SIM cards. Machines. Inanimate objects, requiring us to take action to make them function. So, despite this terminology aiming to indicate the active role of the ‘patient’ (an interesting paradox anyway given the passive associations of the label), I think it enforces the sense that ‘patients’ are passive, requiring interventions from ‘professionals’ to become ‘active’. It also carries with it another layer of deficit-based and blaming terms, like ‘failure to self-manage’, ‘patients with low activation levels’ and ‘less-activated patients’.

Activated patients are also referred to as ‘engaged patients’, and there are ‘patient engagement’ leads and teams and boards and programmes. But as I noted in my blog post about ‘co-production’, ‘engagement’ is something we do to people, at a fixed time, for a fixed purpose. The agenda is ours, you come to us, and if you choose not to show up or respond when we invite you, we label you as ‘non-compliant’ or ‘hard to reach’ or ‘difficult to engage’.

And the narrative of ‘patient empowerment’ describes ‘allowing’ patients to share ideas and be proactive. This language suggests ‘professionals’ gift power – and ‘a voice’ – to patients, and implies both can be just as easily taken away.

All these terms are often part of a rhetoric of ‘demand management’ and ‘cost savings’, not citizenship and wellbeing. Of efficiency and better services, not empathy and better lives.

Customers

There have been attempts to shift the narrative away from patients altogether. Moves to suggest a consumer relationship instead by introducing the term ‘customers’ to healthcare.

Back in 2013, soon after Healthwatch England was launched, “chairwoman Anna Bradley said: “We all need to stop acting like grateful patients and care users and start to see ourselves as savvy consumers, insisting on our right to safe, dignified and high quality care.” [8]

I’m not a huge fan of alternative labels, because – well, they’re still labels. And I think ‘customers’ is just as problematic as ‘patients’, with its association with services and the market, and a lack of connection and reciprocity. The ‘independent’ customer replacing the ‘dependent’ patient – ‘doing for’ replacing ‘doing to’ – when what we really need is to acknowledge and affirm interdependence, and ‘doing with’. Not patients, or customers, but citizens. People. We. Us.

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“The moats we dig between patients and clinicians can drain spirit from both.”

Donald M. Berwick [9]

The term ‘patient’ describes a relationship between people and health care services and workers, but the language reveals just how unequal this relationship often is.

Healthy relationships require trust, reciprocity, respect, equality, love. These relationships are essential for our own health and wellbeing and should be at the core of health care too.

While words can heal as well as harm, and changing the language can help shift power, real change will only happen when we look beyond the labels of ‘patient’ and ‘clinician’ and see humans and humanity first.

See us, not them and us.

“What is the problem with health care? Power.

What is the answer? Love.”

Sue Robins [10]

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References

[1] bird’s eye view, Sue Robins, Bird Communications, 2019

[2] Constitution, World Health Organization

[3] Patient, Oxford Languages

[4] Invalid, Merriam-Webster

[5] Original source unknown

[6] Presenting complaint: use of language that disempowers patients. Caitríona Cox and Zoë Fritz. The BMJ. 27 April 2022.

[7] Patients to receive better care as NHS and social care systems link up, Department of Health and Social Care, The Rt Hon Michael Gove MP, and The Rt Hon Sajid Javid MP, GOV.UK, 9 February 2022.

[8] NHS and care services patients told to fight for their rights, BBC News, 9 October 2013.

[9] Promising care: how we can rescue health care by improving it, Donald M. Berwick, Jossey-Bass Public Health, 2014.

[10] Ducks in a row: health care reimagined, Sue Robins, Bird Communications, 2022