What’s in a name? Patients, clients and consumers @Medici_Manager

http://abetternhs.wordpress.com/2012/04/09/whats-in-a-name/

Patient

“suffering or sick person,” late 14c., from O.Fr. pacient (n.), from the adj., from L. patientem

Alternatives to the term ‘patient’ like ’clients’, ’service users’ and ‘consumers’ have come about as a result of attempts to empower patients by changing their relationships with illness, society and the medical professions.

Calling patients ‘consumers’ is not the same as empowering them. It is very unlikely to change the prejudices associated with illness and disease because these are too deeply historically and socially embedded. The relationships between patients and medical professionals have evolved throughout history as traditional hierarchies have changed, patients have become better educated and medical professionals have been taught to be more patient-centred.

Whatever term we use to replace ‘patients’ is embedded in its own web of contexts. What we understand by ‘consumer’ or ‘client’ has changed in time, responding to pressure and criticism about the balance of power in the constituent relationships.

I believe that ‘patient’ is broad and evolutionary and the criticisms and attempts to replace it with other terms reveal important details about social attitudes. Rather than replace ‘patient’ with another term, it is vital that we understand and challenge what we mean by it.

The patient in a historical context.

Extract from ‘Disease and Social Life’ Henry Sigerist, Civilization and Disease 1943

The attitude of society to the sick man and its valuation of health and disease have changed a great deal in the course of history. … The present position of the sick man in society is very complex, the result of historical developments we must analyse briefly if we are to come to a clear view of the subject.

There are very few truly primitive tribes left in the world. Among them the Kubu of Sumatra seem to merit close study … minor diseases, skin eruptions wounds and similar ailments are frequent with them. People suffering from such diseases are not considered different from other tribesmen for their criterion is social not physical. As long as a man is able to live the life of his tribe his condition does not cause any reaction on the part of the individual or of society.

Things are different in the case of serious illnesses more especially those consisting of a fever such as smallpox … Such a patient finds himself unable to take part in the life of the tribe, he is incapacitated and there is a sharp reaction which leads to his abandonment by both the tribe and by his own kin … The sufferer is dead socially long before physical death has overtaken him.

In the case of tribes living in a higher state of civilisation however… the sick man is considered a victim, unable to live like other people because someone has worked upon him. An enemy has done something to him, has bewitched him … Thus the sick man has a special position in society, claiming the regard of his fellow men as well as their help. He is the guiltless victim of secret powers which are recognised and warded off by the medicine man.

…In the ancient Orient … the sick man was by no means an innocent victim but rather one who through his pain is making atonement for his sins. Disease then becomes a punishment for sin [and] we encounter his view in Babylonia and the Old Testament.

Where such a view prevailed the sick man found he burdened with a certain amount of odium. He suffered, but it was believed he suffered deservedly. His disease proclaimed his sin for all to see. He was branded and socially isolated in a particularly severe way. Disease however, was not only a punishment; it was also atonement for guilt, and thus redemption.

To the Greek of the 5th century and long thereafter, health appeared as the highest good. Disease therefore was a great curse … and by removing [man] from this plane of perfection, made him an inferior being. The sick man, the cripple and the weakling could only expect consideration from society so long as their condition was capable of improvement. The most practical course to take with a weakling was to destroy him, and this was done frequently enough. … The Greek physician would have considered it unethical to attend a hopeless case. Thus the sick man in Greek society also found himself burdened with an odium, not that of sin but of inferiority.

Christianity came into the world as the religion of healing… It addressed itself to the disinherited to the sick and afflicted and promised them healing, a restoration both spiritual and physical. Disease is no disgrace, is not a punishment for the sin of the sufferer or of others, nor does it render the patient inferior. On the contrary, suffering means purification and becomes grace. Illness is suffering and suffering perfects the sufferer; it is a friend of the soul…

The social position of the sick man thus became fundamentally different from what it had been before. He assumed a preferential position which has been his ever since.

The attitudes of society towards the sick that prevailed before the Christian era were never entirely overcome. In the Middle Ages and the Renaissance epidemics were very frequently considered visitations inflicted by God .. Until very recently there were still people who considered mental diseases a punishment for a disorderly life and venereal disease a singularly appropriate chastisement because the manifested themselves in the organs with which people had sinned. The old retributive view of disease is also expressed in the outraged feelings of patients who consider their sufferings as undeserved.

Sigerist brings his historical review of the role of the sick man up to the present day,

The sick man, because of his preferential position, finds himself released from many duties. … The more pronounced [this became] the more obvious was the inclination to escape from the struggle of life and to take refuge in the condition of illness.

This introduction is to give a taste, but by no means the full menu, of what it means to be a sick, and by extension a patient. What is striking is that as time goes by, like layers of paint on an old door, new meanings replace old ones, but the old ones remain underneath, coming to the surface through the cracks, often where and when we are not expecting them.

Brian’s old paper notes take up almost half a rack in the filing cabinet, filling the space taken up by the notes of at least half a dozen patients filed alongside. It makes me wonder about the concealment of complexity in the neat electronic patient records we use almost exclusively now, a full life’s history condensed into a front screen. Considering the weight of his records, he treads lightly and looks well. At least he does as he walks across the waiting room. Usually we talk about his latest trips to the dental hospital, the pain specialist and the neurologist, the physiotherapist and the psychologist; whichever he has seen recently. Most of them have been seeing him for years, helping him with his facial pain, muscle weakness and headaches. It wasn’t long ago that I invited him in to talk to my medical students about living with pain. Our consultations had included many discussions about the functional aspects of his symptoms -how they affect his ability to manage his daily activities, his relationships and his emotions and I felt I knew him very well. Nevertheless I had never asked Brian what the pain meant to him; he said he wasn’t sure what I meant, so I said, “some people believe that they are meant to suffer, that it is a punishment for something they have done, do you ever feel like that?”

“Oh yes”, he replied, immediately and confidently, “I know why I’m like this, and I know it’s not going to get better” He alluded to something long ago, but respectfully I didn’t press for details and he made it clear that we had gone far enough at that time. Since then we have discussed on many occasions the guilt that he struggles to resolve since his wife’s unexpected death many years ago. Though he is still in pain, he has stopped seeing two of his specialists and has halved the dose of his medications.

Illnesses have meanings that are imposed by history and culture. As patients we may find that we are unprepared for the meanings our illnesses take on. The writer and philosopher Susan Sontag wrote about this in relation to her experience of breast cancer in her book, ‘Illness as a metaphor’.

She is particularly concerned with the metaphorical issue of tuberculosis in the 19th century and cancer in the 20th. Most of these metaphors are lurid, and they turn each disease into a mythology. Until 1882, when tuberculosis was discovered to be a bacterial infection, the symptoms were regarded as constituting not merely a disease but a stage of being, a mystery of nature. Those who suffered from the disease were thought to embody a special type of humanity. The corresponding typology featured not bodily symptoms but spiritual and moral attributes: nobility of soul, creative fire, the melancholy of Romanticism, desire and its excess. Today, if Miss Sontag’s account is accurate, there is a corresponding stereotype of the cancer victim: someone emotionally inert, a loser, slow, bourgeois, someone who has steadily repressed his natural feelings, especially of rage. Such a person is thought to be cancer-prone. New York Times review 1978

Shortly after her book was published, AIDS was discovered and proved (as if there was any doubt) that illness was still a metaphor. Though the prejudices are fading I still have patients for whom the social and psychological burdens of being diagnosed with HIV or cancer cause far more suffering than the medical effects. Obesity, in being treated as an illness has been medicalised and carries the additional burden of being mythologised as a punishment for the twin sins of gluttony and sloth. By being medicalised it has gained the metaphor of an epidemic. But the most enduring discrimination and weighty metaphors remain for mental illnesses. The continued political rhetoric about the deserving and undeserving sick, the pressure to force people back to work and the fitness to work assessments by private IT company ATOS that pay scant attention to psychological factors add fresh layers to a long history of prejudice. Underpinning many of these metaphors is one of illness as psychological vulnerability; fearful of being or becoming vulnerable ourselves – we have a natural tendency to locate it in other people – it is he, not me, who is in need, it is she, not me, who is vulnerable.

2007 British Medical Journal article about illness and metaphor echoed Sontag, asking journalists and medical professionals ‘to collaborate in developing sets of metaphors that are factually informative and enhance communication between doctors and their patients’. Whilst well intended I suspect it is not only futile for elites to try to control metaphors which are socially and historically embedded, but there is something disturbing about the idea that elites might try or be able to control the metaphors we use.

Maureen looked after her mother for the last 2 years of her life. She had advanced dementia, renal failure and damage to the nerves in her feet – a consequence of her diabetes. She was in terrible pain … when she died Maureen was shattered, emotionally and physically. I referred her to a psychiatrist to for assessment to see if her memory loss was a sign of her own dementia or a consequence of her depression, but she did not attend the appointment, afraid of the answer whatever it might be. When a few months later she developed the first symptoms of diabetes we both knew that she was terrified of following in her mother’s footsteps. Within a few weeks she had developed pain in her feet, she described it exactly as her mother had -when she still had the ability to express herself. I knew that damage to the nerves happens only gradually after years of high blood sugar levels due to diabetes. For Maureen however the pain served to confirm her worst fears. ….

The relationship between patients and suffering and the labels that stick to them is so complex that it is not surprising that people refuse or are reluctant to be called patients.

In her recent lecture, the 2011 Harveian Oration, GP Iona Heath writes,

Words used in diagnosis as a kind of biomedical revelation, are fixed in time; words used in narrative, as a revelation of the human condition, stretch across time.
‘we find that labelling is always a dangerous process … because it connotes problems as fixed or invariant.’

The relationship that many doctors like myself have with our patients is continuous and the ongoing narrative prevents our patients and ourselves becoming trapped within the words and the language that we use or that surrounds us. This is a theme I have written about before in, A world without health professionals and What is the role of a GP today? …  that of a doctor who ‘bears witness’, acts as friend and comforter, confidant and counsellor. As Iona Heath explains in her book, A Mystery of General Practice,

… the key roles of a General Practitioner are firstly to stand as interpreter and guardian at the interface between illness and disease; and secondly to serve as a witness to a patients illness and disease.

By standing guard at the interface between illness and disease we are manning the gates between human suffering and a biomedical label.

Doctors and patients

The relationship between doctors and patients is integral to the term ‘patient’; the act of engaging with a medical professional transforms the person who is seeking help into a patient.

This transformation is centred in the consultation,

The real work of a doctor is only faintly realized by many lay people.
It is not an affair of health centres, or public clinics, or operating theatres, or laboratories, or hospital beds. These techniques have their place in medicine, but they are not medicine. The essential unit of medical practice is the occasion when, in the intimacy of the consulting room or sick room, a person who is ill, or believes himself to be ill, seeks the advice of a doctor whom he trusts. This is a consultation and all else in the practice of medicine derives from it.

Sir James Spence, quoted in, Doctors, Patients and Relationships Tony Dixon

Just as the attitude of society to the sick man has changed over time, so has the relationship between doctors and patients,

The rapid growth of science in the 18th and 19th centuries led to the development of the physician as expert engineer of the body as machine. This state of affairs favoured principally, as we know, developments in microbiology and surgery. Concurrently, patterns of the doctor-patient relationship stressed the latter’s dependency and inferiority. … In treatment, the activity-passivity or at most the guidance-cooperation type of doctor-patient relationship prevailed. Szasz: The Doctor Patient Relationship and its historical context

This kind of medical paternalism is seen as distinctly old-fashioned and the last 30 years or more of medical education at the same time as,

‘the steady drift of social relations, toward increasing acceptance of, and often insistence upon ‘democratic’ or ‘socialistic’ (equalitarian) patterns of behaviour exerts -we assume- a pressure on medical relations to conform to a similar pattern wherever possible. (ibid)

These days patients are rightly seen as experts who have valuable lessons to teach the professionals. The relationship between doctors and patients has been the subject of considerable study, criticism and debate. Retired GP Dr Julian Tudor Hart sums up the situation we general practitioners (family doctors/ primary care doctors) in particular, have been working towards in his book The Political Economy of Healthcare,

Progress in health care depends on developing professionals as sceptical producers of health gain rather than salesmen of process, and on developing patients as sceptical co-producers, rather than consumers searching for bargains.  Productivity in health care depends on complex decisions about complex problems, involving innumerable unstable and unpredictable variables.  These decisions require increasingly labour-intensive production methods, with ever deeper, more trusting and more continuous relationships between professionals and patients.

The relationship between myself and my patients varies considerably from the idealised one of equal partnership and co-production. Many patients are unwilling or incapable of maintaining this kind of relationship, for example when they are severely demented or very young, acutely psychotic or critically unwell, addicted to drugs or intoxicated. At other times, my patients take the lead, guiding me and teaching me about their conditions. Recent examples have been patients with motor-neurone disease and adrenal insufficiency. Factors such as personality, psychology, disease status (unknown, deteriorating, recovering, recovered etc.) wealth, education, sex and social status, all influence the balance of knowledge, power and responsibility.

The ethical principle underpinning the doctor-patient relationship is ‘respect for patient autonomy’ where autonomy, literally means, ‘self government’ or the capacity to make decisions regarding one’s care. We must be careful here not to conflate ‘individual autonomy’ with ‘relational autonomy’, which is capacity that arises from the relationship rather than the individual. I have explored it in more detail in another post about patients and consumers. The social trend and a powerful myth of our time is one of increasing individualism, whereby we are lead to believe in the possibility of ever-increasing personal (not social) freedom and individual (not relational) autonomy.

One consequence of this myth is that there has been a shift in the situation of health prevention from the societal level to the level of the individual. If politicians and medical professionals were interested in evidence-based public health measures they would be tackling the food, alcohol and cigarette industries, increasing the possibilities for exercise by making streets safer and reducing social and economic inequality. But instead, we are forced to deal with the consequences of social problems in our consulting rooms and operating theatres; handing out expensive, ineffective and frequently dangerous prescriptions for addictions and obesity. My patients are admonished for not taking more responsibility for their health at the same time as I am told that I need give my patients more responsibility.

The aim of government today, of all parties, is to shift the burden of responsibility as far downstream as possible. But in a time of widening inequalities, while the responsibility for change is being shifted downstream, power is being shifted up. Responsibility without power or resources with which to act leads to helplessness and is disempowering.

The idea behind this is that health is individually, not socially determined and the role of the doctor is not so much about sharing responsibility as handing it back to patients. Part of this motivation is to diminish the role of the GP so that anyone or anything (smartphone?) can take over (see The Myth of the Trivial consultation) The reductionism of the doctor-patient relationship is part of a wider process of ‘atomisation’ in which the steady politically motivated criticism of human interdependency is leading to increasing individual isolation. In health care this is seen as shift away from a GP of your own towards triage and nurse-practitioners, walk-in centres and telehealth. In hospital care towards mega-hospitals, increasing specialisation, and ‘Assembly line efficiency’. In nursing towards minimally trained nursing assistants and the denigration of the role of personal care. In every job, this leads an ideological point of view, that health care is like any other industry and each job can be compartmentalised and professionals with a holistic approach to the whole patient may be replaced by technicians.

The doctor-patient relationship has in and of itself a powerful therapeutic dimension and I think that is what Sir James Spence meant when he said, The real work of a doctor is only faintly realized by many lay people (ibid).  This is faintly realised and under acknowledged because we live in a technophiliac society, enthralled by the possibility of a dehumanised, de-socialised, de-politicised technical or chemical solution to our problems. Human relationships are demeaned and undervalued, in part because medicine has become subjugated to the market and human relationships are harder to commodify than technical interventions or sedative drugs. The trivialisation of relationships is not new. The word Trivia stems from the word for the three arts of communication; rhetoric, grammar and logic. These were worthy of lesser respect than the ‘quadrivia’; arithmetic, geometry, music and astronomy, the skills of science. The split harks back ancient Rome, and the trivia were the lower arts, ‘only of interest to the undergraduate.’ The continuing hammer and tongs barney between the evidentiologists and the social scientists is a dangerous distraction from the political motives.

Rejecting the patient label.

The idea of the sovereign individual is so powerful that one reason for rejecting the label patient is to prove that we don’t need others. Just as refusing to be called a diabetic is a refusal to be defined in terms of an illness, refusing to be called a patient is a refusal to be defined in terms of a relationship, particularly one that implies dependency.

Psychotherapists and psychologists who have almost universally ditched the term patient in favour of client. Their rationale is that ‘client’ does not have the historical baggage of medical paternalism. It is also about affirming their difference from psychiatrists (medically trained doctors who prescribe drugs to patients rather engage clients in talking therapies)

There are other reasons for rejecting the patient label. In recent decades there has been an ever-widening of disease categories to include the ‘not yet sick’, such as those with hypertension, high cholesterol etc. driven by a medical-industrial complex that profits from defining ever-higher proportions of ever-healthier populations as in need of medication. They are not in any reasonable sense, suffering, though the drugs can cause unpleasant and rarely fatal complications.

We also care for those with chronic conditions such as diabetes, heart disease or even cancer or mental illnesses that are quiescent or in remission. They have no symptoms of illness and are not in any obvious way suffering or sick and yet we call them ‘patients’. We are much less inclined to define patients by their illnesses with labels like ‘diabetics’ or ‘schizophrenics’ because it is clear that the individual experience of living with a condition is so variable as to make this kind of label an insult to the holistic (whole person) care we strive to provide.

Patient and consumers

In many situations, patients do act as consumers; they research, demand and negotiate the care they want, seek second (or more) opinions, try treatments, reject them and try others, pay for preferential treatment, demand refunds or other recompense, have rights and so on. But there are important differences. There is a differential in knowledge and responsibility. My patients are free to harm themselves by consuming cigarettes and alcohol, junk-food and crack cocaine, but if they demand medical treatment that I believe to be harmful, or even ineffective I am not obliged like the shop-owner or drug-dealer to concede to their demands. Since I only see NHS patients, no amount of money will persuade me to treat the rich man better than the poor woman. This is one reason why the NHS is so cherished and trust in doctors is so high; patients believe that they are treated fairly. I am trained to recognise my patients’ unmet needs; when they come in wanting something to help them settle their stomach, by virtue of my expertise I can recommend self care, a tablet, an enema, a scan or a referral for emergency surgery depending on their signs and symptoms. I am not obliged to consider them as an opportunity for profit or loss. Perhaps the simplest way to describe the difference is that with a consumer one asks, ‘what can I do for you?’ and with a patient one asks the question, ‘what’s going on?’

“I always projected my worries onto my thyroid or physical problems, I knew deep down that it was my husband and his drinking, my mother who had suffered panic attacks all her life, who basically I’ve always had to be a mother to … but it was much easier to talk [to my GP] about physical problems, and then they say, that yes they can help with the symptoms and I thought, well maybe I don’t need to bring up all the other stuff, because there’s nothing I or the doctor can do about it anyway”

A consultation is never trivial. Every interaction is an opportunity to build up a relationship of trust and mutual respect so that when serious illness strikes, we are faced with someone we know.

When Jenny came in to see me with a rash on her stomach all she wanted was a different cream from the one she had been using, something stronger to clear it up. She looked pale even though her face was flushed. The ‘rash’ consisted of swollen veins, like small purple worms just under the skin; her liver was enlarged and irregular. All the signs suggested disseminated cancer. Jenny the woman with a rash, became Jenny, my patient.

Whilst patients clearly act as consumers in many ways, there are many ways in which they do not. And one important function of the NHS is that it means that we do not pay for the care we need. This is vitally important because the poorer you are the more likely you are to suffer from illnesses. And yet in a crucial development the Health and Social Care Bill will change that with the introduction of Personal Health Budgets.

The Department of Health reports:

People receiving continuing healthcare support from the NHS will have the right to ask for a personal health budget, by April 2014 Health Secretary Andrew Lansley announced today. … The announcement follows the independent NHS Future Forum report which recommended action to promote personal budgets and implement them within five years to give patients access to tailored services.

Personal Health Budgets are designed for patients with long-term conditions and include all aspects of care except GP and emergency visits. They may be spent on a manicure, laptop, fruit and veg or gym-membership. Clearly patient’s with their own financial resources will be paying for these things already and not relying on a money from the cash-strapped NHS whereas patients with much less money have to choose between these items and physiotherapy, speech  therapy, personal care or medical equipment. Given this responsibility there is now for the first time in the history of the NHS, the possibility that a patient will have to pay for essential care when their personal budget has run out. BloggersRichardblogger and Kate Thomson have discussed PHB in more detail.

The government are in no doubt that patients should act more like consumers. The Office of Fair Trading said,

“It is important that patient demand and choice are able to drive competition and innovation in this market with a view to better value for all patients” John Fingleton, chief executive of the OFT

This report from the NHS Competition and Cooperation Panel states,

The over-arching theme was the belief that choice and information were the key drivers of competition and innovation in healthcare markets, improving patient outcomes and efficiency in patient care.

What happens when patients become consumers?

When patients are treated as consumers rather than patients to whom we have a duty to work with, we risk a return to the days before the NHS described byGeorge Bernard Shaw over a century ago:

… as doctors they pay unnecessary visits; they write prescriptions that are as absurd as the rub of chalk with which an Irish tailor once charmed away a wart from my father’s finger; they conspire with surgeons to promote operations; they nurse the delusions of the malade imaginaire (who is always really ill because, as there is no such thing as perfect health, nobody is ever really well); they exploit human folly, vanity, and fear of death as ruthlessly as their own health, strength, and patience are exploited by selfish hypochondriacs. They must do all these things or else run pecuniary risks that no man can fairly be asked to run. And the healthier the world becomes, the more they are compelled to live by imposture and the less by that really helpful activity of which all doctors get enough to preserve them from utter corruption. For even the most hardened humbug who ever prescribed ether tonics to ladies whose need for tonics is of precisely the same character as the need of poorer women for a glass of gin, has to help a mother through child-bearing often enough to feel that he is not living wholly in vain.

Treating patients as consumers shifts the paradigm from healthcare as a public good to healthcare as a commodity. Furthermore, when I think about patients, I think about ‘my patients’. This is because I have a list of patients for whom I am responsible. I know how many patients I have with diabetes, cancer, depression, heart disease and so on. I know which ones need to be visited at home and who is expected to die. I know who is due to give birth and who has just been born. When I see my patients I do not have to think about how much I could earn or save from each one, by arranging or refusing a referral. Time spent exploring a problem is at least as valuable as time spent arranging a referral.

In summary.

Patient is a term that is loaded with historical, sociological and political significance in terms of its relationship with disease, society and health professionals. Rejecting it is in part an attempt to tackle the associated disempowerment and balance unequal relationships.

Whilst well-intentioned this rejection has been co-opted by modern neo-liberal capitalist ideology. This dis-empowers individuals by devolving responsibility at the same time as widening economic inequality and undermining social solidarity. True patient empowerment comes from the process of co-production within a respectful therapeutic relationship. The term ‘patient’ is both flexible and resilient enough to stand above all the alternatives. It allows patients to be clients and consumers, to teach and be taught, to refuse care and be cared for. It recognises that doctors and patients are stronger when they work together and it confers on doctors a duty of care that is a vital part of the doctor-patient relationship.

IDEAS

  • Patients (the sick) have always been socially excluded in some way, and the label ‘patient’(in contrast to client/ consumer/ customer etc.) identifies the person as being sick. Refusing the label is both a denial and a way to insist on inclusion
  • Conditions such as infectious diseases e.g. TB, and STIs, Cancer and in particular mental illnesses are the most socially stigmatising. Psychiatry / psychology are the most resistant to ‘patient’ preferring client/ service user/ etc.
  • Alternatives client/ service user/ customer/ consumer have even more baggage than patient

The relationship with doctors

  • Paradoxically, the social trend is one of increasing individualism, whereby we insist on personal (not social) freedom and individual (not relational) autonomy. The consequence is that we are expected to stand on our own two feet, unaided by others or society. Rejection of the label patient is an insistence that we don’t need others.
  • Another social trend is the widening of disease categories to include the ‘not yet sick’, those with hypertension, high cholesterol etc. And also those with chronic conditions such as diabetes who have no symptoms of illness and do not in any way feel sick.
  • When doctors treat patients as consumers they may treat them as a means to an end.
  • The relationship between patients and carers is bound up in social and historical matricies and so is constantly in flux
  • The term patient is flexible enough to cope with these different contexts
  • The only fixed concept with patient is one of a relationship with a care-giver
  • Trivia is rhetoric, grammar and logic, the skills of communication, contrasting with quadrivia, arithmetic, geometry, music and atrostonomy, the skills of science. The split happened in ancient Rome, and the trivia were the lower arts, ‘only of interest to the undergraduate.’ This split is enduring, and increasingly we live in a technophiliac society, enthralled by the possibility of a technical solution to all our problems. Human relationships are demeaned and undervalued, in part because as medicine becomes more subjugated to the market, relationships are harder to commodify than technical interventions.

References:

What’s in a Name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by Experience’, ‘Service User’—What’s Next? British Journal of Social Work . Dr Hugh McLaughlin 2007

Pharmeceutical Marketing and the Invention of the Medical Consumer. Kalman Applbaum

The problem of treating patients as consumers Harvard Business Review blog

Harveian oration: Divided we fail. Iona Heath

Patients and Consumers Great comment by David from e3intelligence.com

Wellcome collection, history of pain

What’s in a name: ‘Client’, ‘Patient’, ‘Customer’, ‘Consumer’, ‘Expert by experience’, ‘Service user’, What’s next? Brit J. Social Work

Patient, client or service user? A survey of patient preferences of dress, address of six mental health professions. The Psychiatrist

Patient, client or service user? Therapy works (psychotherapy)

What’s in a name? Brit journal of developmental studies

Psychiatry in limbo New ways of talking Brit J med professionals

Do we need a new word for patients? Julia Neuberger & Raymond Tallis Letter

The Doctor-Patient Relationship, A review J Hughes

Doctors, Patients and Relationships Tony Dixon Can Fam Phys 1989

Patients and doctors, The evolution of a relationship: NEJM

Susan Sontag. Illness as a metaphor

Direct-to-consumer pharmaceutical advertising is the fastest growing form of marketing, rising 330 percent from 1996-2005. About $4.3 billion was spent in the United States in 2009 on drug ads, and companies have expanded their marketing efforts to social mediahttp://sciencelife.uchospitals.edu/2012/02/16/filtering-the-flood-of-medical-social-media/

Share decision making, the pinnacle of patient-centred care: NEJM

Goal oriented patient care NEJM

Defining patient-centred medicine NEJM

What Is the Heart of Health Care? Advocating for and Defining the Clinical Relationship in Patient-Centered Care J. Participatory Medicine.

Clarke, John; Newman, Janet and Westmarland, Louise (2007). Creating citizen-consumers? Public service reform and (un)willing selves. In: Maasen, Sabine and Sutter, Barbara eds. On Willing Selves: Neoliberal Politics and the Challenge of Neuroscience. Basingstoke: Palgrave Macmillan, pp. 125–145.

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