My wife and I perform a silly little ritual every morning, usually while we’re still in bed with our first cups of coffee. We test each other, simple questions and answers, with roughly the same list of who, where, and when questions every day. We start with our name, date of birth and home address, then names of spouse and siblings. Then we go on to date and time: day of the week, date, month, and year. We finish with some general knowledge questions, for example the names of the current and previous prime ministers, and the capital city.
Are you beginning to recognize a pattern? In medical jargon it is called orientation; it is the basic test of mental competence. If you have been in a hospital recently, as a patient, you will have had an orientation check. It is done by the first – and usually most junior – nurse and, if you are over sixty, it will have been done thoroughly.
Nurses take this very seriously; it is the determinant of whether they treat you as a person or as an object. And, if you are stressed and not prepared, it is very easy to fail – day and date are the most frequent pitfalls. If that has been your misfortune, you will have noted perhaps that the nurse looked at you long and thoughtfully, then wrote in your hospital chart. What she writes will, of course, be carefully phrased but will certainly express her doubts about your mental competence. From that point on her attitude towards you, and that of everyone else on the medical staff, will change perceptibly. They will be more condescending, will explain everything twice, and everything they do will be preceded by the interjection, “is that OK?” They will be extra careful that the seat belt of your wheel chair is secured and that the side-rails of you bed are locked. They will, with the very best intentions, begin to treat you as mentally incompetent.
Glenyce was recently almost caught in this trap, and perhaps this was the incentive for our present diligence. She was having vocal cord surgery because of hoarseness and was being interrogated with the routine pre-surgical checklist. Those questions are precise and always in the same order – name the type of surgery, the site and the side, right or left. Now, this generally makes good sense since, in the past, the most common surgical error of misidentification was operating on the wrong side: amputation of the wrong leg, arthroscopy of the wrong knee or excision of the wrong breast.
However, when you are hoarse, it is impossible to know which vocal cord is affected. When asked for the side of operation, Glenyce, not having prepared, had no ready answer. Knowing the consequences of a wrong answer, she almost panicked. The nurse, who was both very young and very serious, had begun her long, penetrating look and her unease was clearly mounting as the silence continued. How could she let this demented old lady, who couldn’t even remember which side her operation was to be, go on to the next station? She was just about to write this in the chart when I prompted Glenyce by surreptitiously scratching the right side of my neck. She quickly got the clue and interjected the correct answer just in time. It was a close call!
Now the rationale for this silly exercise should be obvious. Glenyce and I are preparing for the unforeseen emergency, for the sudden chest pain, the fall or the drunken driver that will throw us into the medical system with no opportunity to rehearse. If hospitalization is thrust upon us we intend to be prepared. But it is not just the irritation of the moment we wish to avoid. Once a diagnosis like “demented” or “mentally incompetent” is written in your file it sticks. From that day on you will receive the special treatment reserved for the aged and incompetent. Your medications will be counted for you and you will be watched while you swallow your pills. You may find a tag with your name and hospital ward pinned to your gown. You will be allowed out only in the care of a responsible adult, and you will be addressed with the tone of voice generally reserved for naughty children.
This is called “labelling” and it is one of the least appreciated aspects of the medical culture. Although a diagnosis, such as cancer, can also be a label, labelling is generally distinct from diagnosis. It not manifest so much by what you are called, but how you are treated, especially in large institutions. You may be labelled and treated as demented or incompetent without those words ever appearing in your medical file.
This has the ring of peevish annoyance, perhaps tinged with a bit of paranoia; is there any evidence for this accusation? There is. The seminal research was done almost fifty years ago by David Rosenhan (1920-2012), an American psychologist and Stanford University professor who was skeptical about the labels pinned on those with mental illness and the consequences of labelling. He was not alone, his doubts may have been stirred by the best-selling novel, One Flew Over the Cuckoo’s Nest (1962) by Ken Kesey, which had been adapted into a popular Broadway play and a movie. Rosenhan decided a scientifically valid test was required.
A report of the famous Rosenhan experiments was published in Science, issue 179, 1973 with the title, On being sane in insane places. It describes how Rosenhan and seven completely sane associates, ‘pseudopatients’, presented to different psychiatric hospitals with identical, factitious stories, claiming they had auditory hallucinations. All were admitted, but from the time of admission they acted perfectly normally and did not report any further hallucinations, or any other symptoms. They were all labelled with a psychiatric diagnosis (mainly schizophrenia), and given anti-psychotic drugs (which they flushed down the toilet). The average length of stay was 19 (7-52) days and they were discharged only after they acknowledged both their diagnosis (schizophrenia “in remission”) and their need for treatment. This was despite the fact they had been perfectly normal from the moment of admission. Even their suspicious behaviour – questioning other patients and taking notes – was cited as evidence of mental illness. The original diagnoses were never questioned or revised and quite likely remain on their records to this day.
These results, as expected, offended the prestigious psychiatric hospitals in the U.S. and one of the more prominent of these challenged Rosenhan to repeat the experiment, claiming its staff could ferret out his ‘pseudopatients’. During the following weeks 41 of 193 admissions to that hospital were identified by the staff as pseudopatients, as imposters, fakes. In fact, Rosenhan had sent none.
He concluded, publicly, that psychiatrists were unable to distinguish the sane from the insane. The Rosenhan experiments showed that labelling is often a reflection of the expectations of the examiner rather than the state of the patient. Moreover, once on your file, the label of mental illness becomes a lifelong stigma.
Although the Rosenhan study created a stir in psychiatric circles, that stir soon subsided. It took a medical novel, The House of God (1978), to popularize labelling and raise it to a literary art form: satirical, colorful and outrageous. The gomers, slurpers, LOLs and LOM, LOLs with NAD and other imaginative terms introduced in the novel, such as buffing and turfing, have become staples of the black humour of medicine. The House of God was written by Samuel Shem – the pseudonym of Stephen Bergman – who graduated from Harvard Medical School and interned at the Beth Israel Hospital in Boston, The House of God in the book. Although categorized as satirical fiction, it can also be read as an autobiographical account of his experiences as an interne. The belittling patient labels he popularized express the frustrations of the over-worked internes and residents assigned to their care. It was the first literary peek under the skirts of a major teaching hospital, and not a sympathetic peek.
Rosenhan saw medical labelling as an expediency which dehumanized patients and delimited the interactions of medical staff with them. Shem saw it as an outlet for the frustrations of the house staff. Both are affronts to patients’ dignity and obstacles to compassionate medical care. You will never hear a medical professional today refer to a patient as a “gomer.” That is not a claim that labelling has disappeared, just that the sort of labelling popularized by Shem is fictional and obnoxious. Medical labelling should be, and usually is, based on evidence, not prejudice. Part of the evidence is our responses to the questions that are integral to the medical interview.
Medical labelling, however, is only a small part of the picture. Descriptive and pejorative labelling are even broader and more complex. Think of persons labelled as sickly or neurotic. They may be sickly or neurotic only a small portion of the time but the label, and the social expectations implied by the label, cling to them always. They are marked as being different and are treated differently.
Pejorative labels are commonly applied to those on the margins of society. Terms like “drunkard,” “dirty old man,” or “bag lady” convey the picture. The sociological theory of labelling, introduced in the 1960s, postulates that the label determines the person rather than describes him. The drunkard drinks, the bully bullies and the dull-witted fails – because that is what is expected of them. They tend to become the person of the label, and their actions are shaped by society’s expectations. Labelling theory is often invoked to explain anti-social behaviour, especially by the frustrated mothers of rebellious teenagers. Fortunately, most rebellious teenagers eventually tire of role playing and mature into adults. Other pejorative labels are harder to shake.
The aged, particularly the aging male, have been singled out for special attention. History, literature and bawdy humor have mocked old men with labels that are particularly objectionable and disparaging – doddery, rheumy, old codger, gaffer, old goat, old geezer or old lecher. Older women appear to be treated more kindly.
These labels carry a hidden risk that must be carefully avoided. There is a seductive temptation to imitate juvenile males and adopt the role endorsed by the label. Although juveniles will eventually mature and grow out of role playing, there is no such hope for the older male. We must, therefore, deliberately cultivate the labels we prefer within the boundaries of social acceptability. Do you have favourites? I do. Why not cultivate a benign but plausible label that has personal wearability? Sport a bow tie, drive an old Mini Cooper sports car, and eschew email. That will certainly earn you a label, probably “eccentric” not “sporty,” but it is certainly preferable to being called an “old stodge” or an “old curmudgeon” or any of the other labels listed earlier.
Those are not my personal props of course, but to reveal them is to blow your cover. Mine work for me and I don’t mind being called absent-minded or even a little peculiar. Most of my friends expect me to act a bit odd and are not upset if I scratch in public or forget their names. Labelling of that sort can be used to your advantage, to cover-up your real idiosyncrasies, but I also advise an orientation check every morning.
Unwelcome medical labels confer few benefits and the label ‘demented’ is among the least desirable, particularly if you are certain you are not. We cannot avoid interactions with hospitals so we must prepare. Anticipate the probing questions that will be asked and consider the answers you will give. It is worth investing a few minutes of time each morning rehearsing.
Glossary of Terms from The House of God
Gomer (fem. Gomere): Get Out of My Emergency Room. A pejorative label applied to old and demented patients, “A human being who has lost – often through age – what goes into being a human being.” (The Fat Man)
Slurper: A term applied to anyone in the medical hierarchy of the House of God above the level of junior resident, which was the level of The Fat Man and Jo. It implies that promotion is achieved by licking one’s way up.
LOL and LOM: Little Old Lady and Little Old Man.
LOL with NAD: Little Old lady in No Apparent Distress.
Turf: To transfer a patient to another service or out of hospital. To get rid of an unwanted patient.
Buff: To polish or to make look good, a preparatory step for turfing.
House Staff: Internes and Residents.