Triage and the necessity of limits

The assessment or prediction of risk in the Clinic is closely tied to the necessity to ‘triage’ patients. Asking one clinician what she felt the main aim of the Clinic was revealed how triage was more than simply sorting patients.

I think we should be seeing the highest risk patients... that was our aim in 1996 so I think the first thing is to triage off the highest risk.

As she implied, triage was not just about putting patients into different categories of risk, but making decisions about whether they were eligible for the various programmes of monitoring or interventions the Clinic could offer and at what age, or whether they should be discharged. Actively identifying those most at risk, fits a model suggested in the Harper report (1996) which recommends that those at moderate to high risk on the basis of family history, should be seen in

specialist Cancer Genetic Clinics. Despite this apparently clear cut aim, in practice this was something that was not always necessarily easily achieved and

which could frequently involve a rather different explanatory strategy to that examined in the first half of this chapter.

Sometimes triage took place before a patient was seen in the Clinic. The return of the family history form from patients, as well as the referral letter from a GP or breast unit, meant those who did not fit the guidelines could be screened out before they even got to the Clinic. In such cases, patients were sent letters explaining that their family history did not suggest that they were at greatly increased risk of breast cancer. However, information received prior to an appointment at the Clinic did not always provide a clear cut assessment of the situation. The danger of triaging ‘incorrectly’ meant that this often took place in the Clinic with the patient in attendance.^^ As a result a significant amount of time was spent reassuring new or young patients that they were not at that much risk and so did not have to be on a programme of increased monitoring or perhaps would not be seen until they were in their mid 30’s.

One clinician talked about the balancing act involved in triage where resources were finite and when they were often dealing with new patients who had high expectations about what could be available to them.

I am very aware that as a service we are oversubscribed, so I try to stick fairly rigidly to the criteria. That means not starting until people are 35 and if someone’s got a mother who was 41 when she got breast cancer, then they don’t fit the criteria. I do try and stick to that but there are obviously some very anxious people who find it very difficult to cope with not fitting the criteria . So it depends on the person, say you have a person and you say you don’t fit the criteria, well you might have to explain how i t ’s not a perfect

system. So I do try and do it on a patient by patient basis but also try and stick

to the criteria as well, (my emphasis)

These comments suggest that an important part of clinical practice includes a more explicit strategy of ‘talking down’ genetic risk, and/or the scope of the Clinic’s technologies and knowledge. As I examine below, this could involve a rather different use of the Clinic’s visual tools and objects.

This is partly because there is a danger that the most important details o f the family history have not been included or recorded on the form or noted in the referral letter.

For example, in these cases, reproducing the family tree might include an effort to dilute the visual starkness of this iconographie representation. This would involve adding to the tree horizontally to include cousins, aunts, uncles and particularly those who had not had cancer or who might not have been included on the family history form by the patient. This would increase the number of

‘white’ circles and squares (healthy individuals) on the clinical family tree thereby blurring the lines of presumed genetic inheritance in an effort to

substantiate the practitioner’s reassurance to the patient that their risk was much less than they thought.

Sometimes other strategies were necessary as the consultation between, a GP who worked on a part time basis with new referrals to the Clinic, and a particularly insistent young patient illustrated.

The woman in her late 20’s speaks in broken English and explains that she has recently moved here from Spain. She readily details what seems to be an extensive family history and how she has been to her doctor, because she has ‘a problem’ with one of her breasts. She is quite insistent that it is because of her family history she really ‘needs’ to have a mammogram. The doctor explains how according to the protocol run in the Clinic, mammography screening for those who fit the criteria because of family history doesn’t actually start until 35 and is then yearly or 18 monthly after that. The woman appears shocked by this saying to the clinician:

What if something comes up before that, something could come up this year and then I could die.

Looking for a different approach, the doctor turns to the ‘official’ protocol for screening pinned to the wall in front of her desk. She points to the information written there explaining how ‘we just don’t screen people before the age of 35’. The

woman’s reading English is slightly better as she is able to pick up the

information further down the page which recommends screening at 30 for some individuals. Clearly flustered by the woman’s insistence, the doctor points out that ‘this is only if a person’s relative were much younger than yours when they got breast cancer’. She adds that of course ‘the system may be different in Spain’ and

that ‘we don’t normally screen that early because we really feel it could cause breast cancer by having too much radiation’ (my emphasis).

Nevertheless the young woman does not seem put off by this and continues to discuss the pain in her breast. Reluctantly, the GP relents and sends her for a mammogram. Later that morning the result comes back clear and the woman now seems to have no problem with the doctor’s suggestion that she makes contact with the Clinic again when she is 35.

In this instance ‘triage’ had meant talking about one the Clinic’s technologies, in this case mammography screening, in a particularly compromised way and even then it had been impossible not to accede to the patient’s expectations.

Although it was the limits of mammography screening that the clinician highlighted in this case, other strategies could also be used to counter patient expectations. For example, in Hospital Y a very different metaphoric description of genetic inheritance might be used to achieve this end. Here, practitioners would talk about developing breast cancer as ‘climbing a ladder’ and having a

BRCA gene mutation, in terms of starting a few rungs ‘higher on the ladder’. The

key point being that there was a still a long way to go before developing breast cancer, even if you had a gene mutation. On other occasions, clinicians in this setting might explain that there had to be at least ‘8 changes’ before a breast cell turned cancerous, of which carrying a gene mutation was just one.

A very different perspective on genetic knowledge and expertise was sought and presented therefore in the use of these descriptions , informed by a need to disenrole rather then recruit patients into the practices of the Clinic. In chapter five I explore the ways in which these differences can be linked to how various practitioners located themselves within this emerging medical field.

On other occasions, rather than giving presence to the procedure of genetic testing, triage might entail talking not just about the limits of its scope but also the potentially negative ethical ramifications associated with its use. A clinical encounter between a nurse and a regular attendee at the family history Clinic at Hospital X illustrated the way that this strategy might be utilised to offset the expectation of or, in this case, almost a ‘demand’ for genetic testing.

The woman in her mid 40’s has been coming to the Clinic for several years. On arrival within a few seconds of sitting down she says that;

Patient/ I’ve been on the programme now for a long time and I’m wondering when I can have a genetics test, I thought I would have had one by now and I really want to do it soon?’

The nurse seems taken aback and surprised by the request, it’s obviously not something that she had been prepared for in this instance given that the woman had been seemingly happy, up to now, being a regular attendee at the Clinic.

Nurse/ Testing is a big thing with lots o f ethical implications, which could take months or years. It could cause lots o f problems in terms o f mortgages and insurance for you, or your family .

In this scenario the uncertain technical capability as well as the ethical implications of this procedure were used in an effort to communicate to the patient that such a procedure might not be possible and the benefits were less than they might have imagined.^®

It was not just in countering the expectations of new or sometimes existing patients that made ‘talking down’ an important feature of clinical practice, but also the more difficult discharging of patients no longer thought to be at increased risk. Although this was a necessary practice in both hospitals, given the changing nature of referral guidelines^\ which had become increasingly tighter and the fact that some patients had been coming to these clinics for some time, it seemed to be a particularly common feature of practice in Hospital X . Here, the long running Family History Clinic, which had and continues to manage a number of clinical trials, had ‘recruited’ patients at a time when the criteria for inclusion was much less. Following changes to the guidelines for referral over the last few years many of these patients were no longer considered to be ‘at risk’ and therefore had to be discharged.

Some indication of the nature of this challenge was illustrated in an appointment I observed between nurse practitioner and a regular attendee at the Family History Clinic in Hospital X. The patient was a woman in her early 40’s who had been coming to the Clinic on a regular basis for about five years since the death of her mother.

The familiarity between the patient and the nurse is evident from the start of the appointment as a discussion unfolds about the latest work project the patient, who is involved in a branch of the media, is doing. But as the encounter proceeds this casual intimacy is subsumed by the nurses more considered and careful attention to the family history. Irene, the nurse extends her normal offhand inquiry about whether there have been any ‘changes in the family history’.

She asks the woman to confirm again the ages at which those relatives who did

“ The issue o f insurance was however most commonly raised when obtaining informed consent from patients for genetic testing.

have cancer were diagnosed. The woman attuned to the routines of the Clinic, picks up this digression and says almost half jokingly:

Now you’re going to tell me that you think having a family history isn’t as great a risk as you thought it was and I can’t have my screening. Please don’t take my screening away from me, will you? (said in mock crying voice).

The nurse, reading the underlying concern in the woman’s ‘pleading’ tries to arrest her fears saying that ‘you’ll probably be ok’, whilst also glancing not so reassuringly at the guidelines for referral that she has pinned to her wall. This interchange demonstrated how difficult discharging patients might be with this group of patients. It might, for example, involve liberal use of the predictive graph, particularly when patients were older in their fifties. On these occasions clinicians would point to the downward trajectory of the curve after the age of 50. They would explain that the risk of a cancer being linked to a gene was significantly less if a relative was over 50 when they developed breast cancer. If the person in the Clinic had reached this age or was older they would similarly point out that their chances of getting breast cancer (that might be linked to a gene) were reduced.^^ Clinicians would often say that this meant that they or their relatives had ‘lived through most o f their genetic risk’. Such descriptions implied a dramatic reversal in the way agency was attributed to genes and DNA at other times in clinical practice, such as those examined in the first part of this chapter. The fact that triage is a notion used in both the military battlefield and the medical emergency room, appropriately evokes what can be a difficult aspect of medical practice. This is a particularly salient feature of breast cancer genetics, where as we have seen the expectations of patients are high. Negotiating triage meant making use of the tools and objects of the Clinic in a different way that was clearly not just about securing the authority of medical knowledge and technology but was sometimes also about drawing attention to its limits.