An Illness Script: Reflecting (on) the Patient's Story

by Nick Cork

 “Doctors strip away the personal and specific to make their version of the story and in doing  so sometimes forget that the reason we do this is to help the person in the bed. That person is more than their disease, but sometimes that seems to get forgotten." (Sanders: 2009)1

 

In her 2009 book, Diagnosis1, Lisa Sanders explores the narrative processes and mechanisms in operation during the medical consultation, facilitating the ultimate aim of the doctor in securing a correct diagnosis for the patient. Through the patient’s recollection of prior illness the doctor is able to construct a translated description, in ‘the language of medicine’, which is recorded in the medical notes and should converge on a single explanation of the patient’s condition. For the doctor in training, attention is focused on the acquisition and memorization of these ‘illness scripts’2. Such purified characteristics of a given disease are based on clinical symptoms and susceptibilities in the patient, enabling pattern recognition and pointing to a probable diagnosis. However, there is an inherent danger here, with Kleinman3 suggesting that:

 “Practitioners, trained to think of ‘real’ disease entities, with natural histories and precise   outcomes... have been taught to regard with suspicion patients’ illness narratives and causal beliefs. The form of those narratives and explanations may indicate a morbid process; the  content may lead them astray. The way of the specialist diagnostician... is not to credit the patient’s subjective account until it can be quantified and therefore rendered more ‘objective’.”

 As Sanders develops, the diagnosis itself is not the ultimate aim; the truly skilled doctor will then reweave this explanation into a story in the language of the patient, which resonates with their contemporaneous life and comprehensions and can be reabsorbed accordingly. Thereby the patient is empowered with an understanding of their disease, and equipped to traverse the new behaviour(s) required in order to regain control over their affliction.

 Even in the case of incurable disease the formation of a suitable story can offer meaning; the reconciliation of a new perspective can relieve suffering. Gerle et al.4 demonstrated that offering terminal cancer patients the facts regarding their illness was associated with considerably lower levels of anxiety and depression, and a corresponding reduction in prescribed antidepressants, compared to a control group from whom the information was largely withheld. Though this was conducted in a predominantly adult population, Goldberg and Tull5 assert that a similar approach is appropriate in adolescent patient groups, whilst acknowledging individual differences in temperament and maturity, concluding:

 “Adolescents respond to illness, disability and fear in different ways. Some may withdraw, blame others, blame themselves, act more childish or become precociously wise and mature. The likelihood of a positive adjustment is increased when the adolescent cancer patient is provided the opportunity for control and self determination.”

 This is holistic practice. The clinician forms a therapeutic alliance with the patient, such that their illness narrative can be freely explored in an environment of trust, ensuring equal emphasis on the patient’s perception of their condition whilst information sufficient to establish a diagnosis and its subsequent management is discussed. The most common criticism of modern orthodox medicine - that it is reductionist, concerned only with symptom alleviation and indifferent to patient suffering - comes as a result of an unfinished process. The doctor here, for any number of reasons that could include time pressures during consultation, undue fixation on diagnosis acquisition or a real inability to communicate, fails to convey to the patient an appropriately translated narrative that tessellates in the broader context of their life.

 The challenge then for the doctor is how to mediate between, on the one hand, the patient’s dependence on specialist medical knowledge and skills for their continued health and, on the other, the responsibility to continually empower patients with autonomous choice6. Since individual patients have individual requirements, which themselves are temporally specific and subject to change, such tension can only be navigated via the establishment of a strong doctor-patient relationship that provides a participatory forum in which to assess specific needs and promote shared decision-making.

 In response, and inspired by witnessing staged excerpts of Nell Dunn’s Cancer Tales, I chose to focus on the past experiences of an adolescent cancer patient*, now five years in remission, whose voice I was able to capture in a semi-structured interview and present through the medium of verbatim theatre-script. Verbatim theatre is characterised by a precise reconstruction of prior documented dialogue, thereby offering a compelling accuracy and authority due to the absence of written artifice or supposition. My selection, therefore, was a conscious one - the audience should be constantly aware that all speech is real and is vocalised in performance as de novo; all events portrayed have taken place, though I took the liberty of condensing Amy’s original interview in order to craft key dramatic moments. But this is Amy’s voice, the syntax, vocabulary and emotion are hers alone.

 It was my intention that this collation of Amy’s recollections should guide an audience progressively through a number of themes, structured in scenes, focusing on particular snapshots that defined her treatment. Furthering the concept of forming a story to engender new meaning, as discussed above, my target audience was the medical profession. I aimed to reverse metaphorically the concept of an illness script, transforming the normally clinical narrative for the patient’s eventual benefit into an emotive narrative for the doctor’s benefit.  Poor communication became the illness, expressed symptomatically through the distress caused to Amy from traumatic medical interactions beyond her cancer diagnosis, the treatment being the concentration on constructing the doctor-patient relationship described previously. By highlighting the consequences of such individual moments of patient experience, I hoped to further educate those involved in cancer care, if only by a small degree, as to the tactics facilitating and obstacles undermining best practice.

 I found the entire exercise incredibly moving. Amy is a friend of mine at university. I had felt honoured that after only a few months of knowing each other she had trusted me sufficiently to reveal her history as a cancer patient but I had never asked too many questions. I was always very conscious that she wanted to distance herself from the label of ‘cancer survivor’, that the condition which had defined her past should not be allowed to define her future, and that for this reason she trusted few new friends with her secret. Amy is slender, with large eyes and an infectious laugh - the only clue, if you recognise what you’re looking at, is the scar from the Hickman line occasionally visible when she wears a strap top in warm weather.

 I was timid when I first approached Amy and asked whether she might be prepared to share some of her experiences in an interview, and enormously grateful when she kindly agreed, but I couldn’t have anticipated how willingly she revisited such emotional landscapes for my benefit. Superficially there is little to distinguish between us, beyond our different genders; both of similar backgrounds, from the same part of the country, both with pale skin and brown hair. As the interview progressed I found the disparity in our adolescent experiences increasingly troubling whilst I was simultaneously filled with admiration. I tried to imagine how I would react if faced with the situation she had triumphed through and honestly didn’t know if I could have handled it with the grace and positivity that she now exudes. Above all, I was inspired by her strength and stoic resilience, whilst humbled by a new sense of perspective - she had weathered every trial I have ever had to face, in school or social circles, while battling head-on a situation that I, even now, struggle to comprehend.

 Fundamentally, her interview forced me to consider the Whole Person Care element in a new light. My response was so far removed from the cerebral, academic approach that I had previously taken in studying Medicine - I was shocked - but resolved immediately that I had to do justice to the information with which I had been entrusted, and to her act of sharing that I so appreciated. I realised I was a witness to something so deeply personal that I had to abandon my original intention, which had been to conduct a number of interviews surveying the impact of new web-based communicative mediums and unfiltered information pertaining to health care on the modern doctor-patient relationship. I had shunned the opportunity to produce a piece of artwork, pursuing instead the notion of ‘legitimate’, ‘scientific’ research. This idea now seemed intensely banal, and besides, my ambition had only ever been to enlighten the readers of my study as to a particular challenge in improving the quality of cancer care. I saw no distinction between that intention and my newly devised project; to portray Amy’s experiences through a piece of theatre, except that in doing so. I might preserve their raw, untempered emotional power and thereby suitably honour the gift I felt I’d been offered.

 I believe that my consciousness has been raised through this journey on two main points. Firstly, I now recognise the validity of the concepts raised in the Whole Person Care unit, in particular the assertions that hearing the patient’s story and forming effective relationships are vital in facilitating effective patient care. The focus of my creative response is now on the imperative to truly listen to patients, reflecting my internal process whereby listening to Amy’s story proved so enlightening, and on using this experience to encourage others to promote the formation of constructive doctor-patient relationships. Secondly, I feel that my piece of writing, An Illness Script, further reflects a truth inherent in many modern medical conditions; that the diagnosis is but a single moment in a potentially life-long battle. The focus whilst training as student-doctors is predominantly on identifying the biological aetiology of conditions we will later witness in clinical practice, and it is a valid pursuit, but the subsequent therapy will be severely undermined by failing to holistically recognise the human status of the patient, who has concerns and beliefs and frailties beyond their diagnosis. Conversely, addressing these additional human facets constructively has the real potential to alleviate suffering. If my representation of Amy’s story propagates, in any small way, my realisation to the minds of others, then I will feel as though I have done her proud. Her story deserves attention.

 *Amy, as she is referred to in the piece, is a substituted name in order to maintain confidentiality. Amy fully consented to the recording and replication of her interview, which was obtained in private using a dictaphone, and the resulting recording was subsequently deleted following transcription.


References

1 Sanders L. Diagnosis: Dispatches from the Frontlines of Medical Mysteries. London: Icon Books; 2009.

2 Schmidt HG, Rikers RMJP. How expertise develops in medicine: knowledge encapsulation and illness script formation. Med Ed. 2007; 41: 1133-39.

3 Kleinman A. The Illness Narratives: Suffering, Healing and the Human Condition. New York: Basic Books; 1988.

4 Gerle B, Lundin G, Sandblom P. The patient with inoperable cancer from the psychiatric and social standpoint. Cancer 1960; 13: 1206-1217.

5 Goldberg RJ, Tull RM. The Psychosocial Dimensions of Cancer: A Practical Guide for Health Care Providers. New York: The Free Press; 1983.

6 Brennan J. Cancer in Context: A Practical Guide to Supportive Care. New York: Oxford University Press; 2004.


                                                                       An Illness Script

 

SCENE ONE 

(Lights up. The stage is sparsely furnished with the basic recognisable features characteristic of a room in a  medical environment. A bed that looks as though it could never be comfortable. A functional bedside cabinet  and plastic chair nearby. It could be any room, in any hospital or primary care setting, anywhere in the  country.)

 

(Amy and her Mum enter. Amy sits lightly on the edge of the bed, facing the audience. Her Mum takes the plastic chair.)

 

AMY

Ok, so I was diagnosed with Acute Lymphoblastic Leukemia when I was twelve years old. Basically I was really sporty, and I used to do hockey, swimming, netball, I was in all the teams, just really ridiculously sporty. And I did a lot of running, 800 metres and cross-country, and I started to notice, I still did it at the same standard, but my face was completely pale and looked a weird colour, my head would be just banging. I didn’t have any of the common symptoms; I didn’t have bruising or an enlarged spleen, it was just purely the tiredness, lack of energy, and loss of appetite. When it got really bad, just before I was diagnosed, I went back to my GP a few times - I was really struggling with, not with staying awake, but I’d be at school and just walking up the little hill we had to go up to get to the canteen, one day I just fell over, my legs couldn’t hold me up anymore. We lived in a three-storey house and my room was on the top floor, and to get up there I was fine normally, but then I noticed that my legs were in so much pain, just to get up the stairs, and my head was just banging.

 

(A female GP enters and begins what appears to be a routine examination, checking her ears with an otoscope.)

 

I went back to the doctor for the third time, she tried to fob me off again with an ear infection - I think she said it was:

GP

Just bubbles in your ears

 

AMY

Or something from swimming, and she went like that

(winces as the GP pulls down and examines her lower eyelid)

and said,

 

GP

No, you’re not anaemic.

 

AMY

Not much, I only had half the haemoglobin I needed.

 

Anyway, my Mum was like,

 

MUM

Can she have blood tests?

 

AMY

And she said,

 

GP

Well, I don’t see the point.

(pauses)

But if it’ll make you feel better.

 

(The GP leaves)

 

AMY

And I had the blood tests and then the next day she went into my Mum’s work and told her I had Leukemia. That was my diagnosis.

 

SCENE TWO

 

(A female doctor enters, but walks to Amy’s Mum, who has left the chair and is pacing the room a distance from Amy. They engage in conversation, too muted for the audience’s ears. The doctor’s hand movements are considered but demonstrative.)

 

AMY

Chemo lasted for two and a half years. It was supposed to be two, but it’s not uncommon to have a lot of delays because you’re neutropenic, so you can’t continue with chemo, you have to wait for your neutrophils and platelets to come up and everything. There’s a limit, every time it gets knocked below a certain limit you can’t continue, so you have to keep waiting, so there’ll be a week or two weeks without any chemo. And then obviously, when you get infections and stuff which are also really common, if you’re really bad they won’t give you any more chemo, because it’s just going to make you worse.

 

They told us actually, at the very beginning:

 

DOCTOR

We lose more kids to infections than we do to the cancer itself.

(gives a small look designed to reassure and leads Amy’s Mum offstage, still in conversation.)

 

AMY

Well, they told my parents, but my parents told me. Actually, I remember saying, when my Mum told me what was wrong with me, I remember saying to her,

 

“Please tell me everything. Just tell me absolutely everything there is to know. Everything. Please be honest with me and just tell me”.

 

And they did, so I knew everything. And to a certain extent it was good, because I felt it was important for me to know, I wanted to know.

 

SCENE THREE

 

AMY

They would tell us stuff to explain why they were doing what they were doing, and the statistics just came in at the beginning, just to explain what the chances were and stuff. I don’t know if my parents asked for them, they probably asked for them, to be honest, otherwise I don’t think they’d offer them.

 

The thing is, that got to me - the statistics absolutely did my head in. Every day I worried about relapsing and just going over them in my head. I always said to myself,

 

“I make the statistics. Statistics are based on what happens to people”.

 

So I tried to tell myself that, but also it was just... knowing that ‘six out of ten kids’ or ‘four out of ten kids’ die from what I’ve got, and I was just thinking,

 

“What if I’m one of those four?”

 

And sometimes driving myself crazy by flipping a coin and thinking,

 

“If it lands on heads then I’m going to relapse.”

 

Literally it was ridiculous, I just tore myself up worrying about it for two and a half years until it happened.

 

I was in hospital for the second time around - really, really ill, everything was so low. I was neutropenic, I had C. diff, and three separate Strep infections in the Hickman line - one is fatal. So I had all these going on at the same time, and I was in immense pain from all the chemotherapy drugs which meant I couldn’t even stand up, my feet were so painful.

 

So I was obviously at a massively low point; nothing was working and they booked me a bed up on intensive care, which I think, this was at the... you know... this was bad times, and I think they didn’t know what to do.

 

I remember I was just sitting on my bed, and a stupid little doctor came in, and she made some comment like,

 

DOCTOR

(entering abruptly)

Cheer up!

 

AMY

Or some sarcastic comment that I shouldn’t be so sad, something like,

 

DOCTOR

Make an effort to be more happy!

 

(The doctor busies herself with her paperwork, before checking Amy’s pulse, then bustles out of the room. Amy maintains her focus on the audience throughout. Their eyes never meet.)

 

AMY

Or something along those lines. It wasn’t a simple, “cheer up,” in a nice jokey way, it was an accusation that I shouldn’t be feeling down, and I just lost it. Not with her, I just burst into tears. I just thought that was unbelievable - there I was, this fifteen year old girl, dying, knowing I was dying, feeling incredibly ill, undignified, my life had been taken away from me, I had nothing left. And I had been amazingly positive even so, and this one day that I was feeling down, understandably, and it was just disgusting that she said that to me. Who was she to say that to me?

 

 

 

SCENE FOUR

 

AMY

In my experience, obviously I can’t speak for everyone but, as far as communication goes, it’s purely on a personal basis; whether that doctor knows how to be a doctor or not. I’ve had some awful experiences with really, really awful doctors and it’s just had such a negative impact on my health because of the way it made me feel. Even to this day there are just horrible memories that I have and I just think communication is the most important thing. But I do think it’s a personal thing, and some doctors just shouldn’t be doctors, and they don’t even seem like they should be human beings. The experiences I had mostly with my main doctors - they were fantastic at communicating, they listened.

 

My two main doctors, both women, one at my local hospital, one at the main hospital - absolutely amazing, incredible women. Lovely, lovely women and so professional, and just so on the ball with everything. Just their sensitivity, their empathy, they’re so thorough when they do check-ups - just a routine, weekly check-up and they would do everything and just really make sure.

 

(As Amy speaks, a female doctor enters and gives Amy a hug, but with her back turned to the audience, her face hidden from view. Amy continues uninterrupted.)

 

The way they spoke to you, I remember my main consultant one time came into my room and she gave me some news that wasn’t so good, and she just sat on my bed and cuddled me while I cried. I had tears on her jumper, and I felt really bad because I’d messed her jumper up, but she was just so nice, and that’s what you need. I totally trusted her, it would have been such a different experience without those two women.

 

(The female doctor gets up to leave. Amy smiles at her as she goes.)

 

Listening is the most important thing, and the way they spoke to you. I don’t really know if training is the sort of thing that would improve it, because I do think it’s a personality thing in a lot of people. My relationship with them was as good as it possibly could have been; I was able to ask them anything, talk to them about anything, felt completely comfortable with them and trusted them absolutely.

 

I was so lucky to have them.

 

(The lights go down)

 

Nick Cork,

Whole Person Care, Year One, 2011