Category: Articles

The gender imbalance in ADHD

Attention-deficit/hyperactivity disorder (ADHD) is a highly prevalent neuropsychiatric condition placing a considerable burden of disease on our population. ADHD primarily manifests in childhood with symptoms of inattention, hyperactivity and/or impulsivity that affect normal function. [1] Though ADHD affects both children and adults, current literature has focused greatly on the disorder in children and this paper will focus mainly on the paediatric population. Australian statistics reported ADHD as the leading mental and behavioural condition amongst children 0-14 years of age, accounting for 12% of children with a disability in 2004. [2] Furthermore, the diagnosis of ADHD in paediatric consultations has increased in frequency to almost 18% of the referred population. [3] Unfortunately, the prevalence of ADHD has been difficult to assess due to its heterogeneous nature and dependence on diagnostic criteria and classification. [4] Despite these obstacles, the reported demographic of ADHD has illustrated a skewed gender distribution towards males worldwide, creating a scope for exploring the gender differences in ADHD. [5-7] Current research has focused on theories supporting changing diagnostic criteria, phenotypic differences and biological differences to explain this gender difference in the prevalence of ADHD. However, to better understand this gender distribution, it is important to understand the terminology utilised in ADHD and how this has influenced current prevalence estimates for the disorder.

Definition of ADHD

The terminology and criteria surrounding ADHD have undergone significant revision over time. On the whole, it should be emphasised that normal childhood development displays active, impulsive and inattentive behavior and diagnosing ADHD should be based on a comprehensive subjective and objective assessment of the individual. [1] The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) provides specific criteria for diagnosing ADHD, but is also a prime example of the changing definition of the disorder. [1] ADHD was initially defined as a hyperkinetic reaction of childhood in the DSM-II, followed by Attention Deficit Disorder, with or without hyperactivity, in DSM-III, and finally ADHD with subtypes presented in DSM-IV. [8] The DSM-V now defines ADHD as pattern of inattention and/or hyperactivity-impulsivity that is persistent, interferes with development, has symptoms presenting in two or more settings, and directly impacts on the individual’s functional capabilities. [9] The core symptoms of inattention and hyperactivity-impulsivity each contain their own set of symptoms, of which six or more must be present in children and five or more in adults for at least 6 months prior to assessment. [9] The DSM-V has also reframed subtypes of ADHD from the DSM-IV to presentations including combined presentation, predominantly inattentive presentation and predominantly hyperactivity-impulsivity presentation. This evolving terminology has been implicated in many studies attempting to explain the differing prevalence of ADHD across the world, which, in turn, influences the gender distribution of ADHD.

Prevalence of ADHD

ADHD is a heterogeneous disorder with symptoms requiring both temporal and spatial conditions and the lack of definite diagnostic tools has prevented an accurate representation of the disorder worldwide. [4,8,10] Firstly, there are variations in methodology, including the diagnostic criteria used and evaluation of clinical impairment. [4] For example, studies may illustrate increased rates of childhood ADHD classified using the DSM-IV criteria but decreased rates in those who undergo further assessment, suggesting diagnostic inaccuracy. [10] Furthermore, a recent community-based study in America illustrated increasing prevalence estimates with the new DSM-V criteria for age of onset and symptom count, but decreasing prevalence with the new criteria requiring a degree of impairment due to the disorder, based on changing case definitions of ADHD. [8] Overall, there are strengths to having accepted diagnostic criteria in the DSM, however the lack of tools to identify and quantify these symptoms continues to be an obstacle in current prevalence estimates for ADHD.

In addition, the population sample (e.g. community or clinic) contributes greatly to varying prevalence estimates. [4] For example, an Australian study based on participants identified in a parental-reported survey illustrated an ADHD prevalence of 13.6% with a male: female prevalence ratio of 2:1. [6] Conversely, an Australian clinical study showed a greater gender difference with a male to female ratio of 4:1. [3] This illustrates a well-recognised pattern in the prevalence of ADHD where male to female ratios are higher in referred populations than in community-based samples. [4,7,11] The main explanation for this evident gender distribution between the population samples has widely been accepted as referral bias, whereby a myriad of factors has resulted in a greater number of males reaching clinics for diagnosis and management of ADHD. [11] There have been many factors found contributing to this referral bias including phenotypic differences, recognition of comorbidities and symptom reporting amongst the ADHD patient population. [11] Overall, the skewed gender distribution in ADHD prevalence is influenced by both methodology and population variables and these need to be carefully considered when analysing the role of gender in ADHD.

Phenotypic differences in ADHD

ADHD presents with a myriad of manifestations that share the underlying characteristics of inattention and/or hyperactivity. In general, the main differences in symptom recognition for ADHD differs with males being more likely to be recognised for externalising symptoms in contrast to females exhibiting internalising features. [5,7,12] These symptoms can be further described as males more likely to present with disruptive behaviours that correspond to the hyperactive-impulsive core symptoms whereas females are more likely to present with symptoms correlating to inattention. [6,7,10,12] Multiple studies have also shown that females are more likely to exhibit physiological anxiety, whereas males were reported for rule breaking and risk taking actions. [6,12] Females were also more likely to present with somatic complaints, which have been considered a marker for anxiety proneness across the literature. [7,12]

Furthermore, the recent inclusion of ADHD subtypes has added to the gender differences in ADHD, where females are found more likely to be diagnosed with predominantly inattentive ADHD whereas males are more commonly diagnosed with predominantly hyperactivity-impulsivity or combined presentations. [12,13] This, in turn, has consequences on the aforementioned referral bias, where females who are identified to have symptoms of ADHD were not considered impaired if exhibiting inattenttive ADHD, but considered severely impaired when exhibiting hyperactive-impulsive ADHD. [11,13] Another implication of these subtypes is the tendency for hyperactive and/or impulsive behaviour to lessen over time whereas inattentive behaviour tends to persist. [1] This, in turn, may lead to more males being recognised for their ADHD in childhood due to an increased tendency to express hyperactive/impulsive behaviour and for female patients to be under-recognised. [13] Phenotypic differences in ADHD play an important role in ascertaining the gender distribution of this disoder as these differences may result in referral bias and therefore account for the greater number of males recognised with the disorder. [11,13]

Comorbidities in ADHD

Comorbidity in childhood psychiatry is an expected phenomenon, with ADHD commonly presenting with common concurrent neuropsychiatric conditions. [14] For example, disruptive behavioural disorders such as oppositional defiant disorder have a high rate of comorbidity with ADHD, sharing particular symptoms with the hyperactive or impulsive subtype. [14] Similarly, anxiety disorders are also commonly diagnosed in patients with ADHD, usually with a more severe and distinctly inattentive clinical presentation. [15] Furthermore, these childhood psychiatric disorders appear to illustrate a similar gender distribution to that of ADHD, with disorders such as autism spectrum disorder being widely accepted to have a male predominance in childhood. [16] However, reports of comorbidity in ADHD is subject to the same limitations of referral bias, phenotypic differences and diagnostic criteria that influence the prevalence and gender distribution across childhood psychiatry. [14]

Furthermore, both males and females have been found more likely to have comorbid ADHD, in comparison to a solitary diagnosis of ADHD [17] Some studies have shown parents and teachers to report more difficulties with oppositional behaviours, social difficulties, depression and anxiety in females, compared to their male counterparts. [12] However others have illustrated an equal increase in presentation of comorbid conditions in the hyperactivity-impulsivity subtypes, with the gender difference being higher levels of comorbidity for females in the inattentive subtype through comorbid social and generalised anxiety disorders. [17] Another study found the only statistically significant gender difference to be a higher rate of substance use disorders in females with ADHD, particularly in early adolescence. [13] Overall, comorbidity in ADHD is an important consideration in studying the prevalence of the disease and how the gender distribution of these disorders can influence the gender distribution of ADHD.

Symptom reporting in ADHD

Firstly, many studies have commented on symptoms reported by patients, parents, teachers and clinicians – all of which provide different criteria for diagnosis of ADHD. Studies have shown self-reported symptoms to be highest in the clinical setting, whereas community-based research focuses heavily on parent- and teacher-reported symptoms. [12] A review of variations in ADHD prevalence mentioned that multiple studies have shown different rates of symptom reporting between parent and teacher. [4] Teachers’ contributions are substantial as they can provide daily observations of patients in comparison to unaffected individuals of the same age, environment and developmental level. [4] Parents are also valuable as they provide a change in an individual’s behaviour over time. However, both groups lend themselves to symptom recognition biased towards hyperactivity and impulsivity, as these tend to be more disruptive in both the school and home environment. This results in under-recognition of internalising symptoms such as depression and inattention, which, in turn, influence the rates of symptom reporting for ADHD. [4,12]

Furthermore, the culture surrounding ADHD has resulted in it being considered a male disorder. [5,10] This has multiple implications, from a greater tendency to recognise symptoms in the community to specialist referral for ADHD symptoms, with the social and cultural constructs of ADHD making males more likely to be subject to symptom reporting. [7,10] The lower prevalence rates have also been attributed to the higher likelihood of referral for disruptive behaviour, more commonly seen in the hyperactivity-impulsivity presentation or combined presentation of ADHD [11]. This, in itself, creates a skewed gender distribution as these have been illustrated at higher rates in the male population. [5] On average, there are more similarities than differences in the symptomatology of ADHD across genders, and symptoms are not sex-specific, but rather show trends as discussed above. [5,13] However, it is important to be aware of the gender differences when applied to ADHD subtypes, comorbid psychological conditions and the sources of symptom reporting for accurate diagnosis and management of ADHD in our population.

Biological Differences in ADHD

Biological factors have also been shown to influence gender differences in ADHD prevalence in our population. However, the majority of research conducted in this field has been underpowered due to the disproportionate number of males diagnosed with the disease, and the lack of drive to characterise any prospective sex differences. [18] A recent review discussed the evidence for neurogenetic and endocrine mechanisms, where differences in chromosomal composition, sex-linked genes and early exposure to hormones can interact to affect the manifestation of ADHD between sexes. [19] For example, there is an inherent sex difference in the male-limited expression of the Y chromosome and the presence of only one X chromosome, which leads to the presence of different genes and mutations that may influence neurodevelopment and susceptibility to ADHD between genders. [19]

Furthermore, there is increasing research into the anatomy and physiology of the neurological aspects of ADHD. This has illustrated a complex network of brain regions that are structurally modified to produce a developmental deviation in response to immature cortical under-arousal. [18] This has also produced gender differences whereby electroencephalography (EEG) studies have shown different patterns between males and females, and further differentiation between ADHD subtypes. [20] Overall, the current literature has emphasised a need for more focused research on the biological differences in ADHD to better characterise the profile of ADHD in males and females.

Management of ADHD

The implications of gender differences on the diagnosis and identification of ADHD have been discussed, however it is important to also consider the impact of gender on the management of ADHD. Pharmacological management in the form of stimulant medication has recently been gaining traction in current treatment practices for ADHD. [3,21] In general, current trends have shown that males with ADHD are more likely to receive pharmacotherapy and psychotherapy than females. [13] For example, in Western Australia, the prescription rates for stimulant medication were greater in males than females. [22] NSW Public Health illustrated a similar pattern, with males four times more likely to be on stimulant medication than females, though there has been an increase in the prescription patterns for females over the last two decades. [23] These statistics elucidate gender differences in practitioner trends and management of ADHD, however further investigation would be required to explain these trends in correlation to the disease recognition and prevalence as discussed earlier. In addition, it is also important to consider the possibility of gender differences in the treatment response for ADHD, though a recent population-based study has shown the response was favourable and did not differ between genders. [24]

In addition to pharmacological management, there is an increased role of behavioural intervention in the management of ADHD. Behavioural therapy represents a collection of specific interventions that modify the physical and social environment in order to change behaviour. [21] These interventions can be delivered through parental, classroom or peer interventions that reward desired behavioural traits and discourage undesirable behaviours through techniques such as planned ignoring, appropriate consequences and/or punishment. [21] When considering individual behavioural intervention in ADHD management, females are said to benefit from management of comorbid conditions such as mood and/or anxiety disorders that may exacerbate the expression of ADHD in combination with pharmacotherapy. [25] Mixed-gender treatment is another option for behavioural intervention in ADHD, which involves group-based behavioural interventions with both male and female patients. However, studies have shown gender differences to influence this management strategy as the mixed-gender setting may suppress treatment effect in females and fail to address gender-specific social impairments. [26] A recent American study investigated the effects of single- versus mixed-gender treatment for adolescent females and found females were more likely to benefit from single-gender treatment with more assertiveness, self-management and compliance. [26] Conversely, males exhibited lower levels of physical and relational aggression and better self-management and compliance in the mixed-gender setting. [26] Overall, behavioural intervention is important in the management of ADHD and needs to account for gender differences in disease presentation and response to treatment.

Future directions in ADHD

ADHD is rapidly gaining awareness for its burden of disease in our paediatric population. However, current literature has lacked focus in characterising important epidemiological trends in ADHD, such as the distribution between genders. Firstly, most of the discussion above has been based on studies using the DSM-IV criteria for diagnosis and therefore further studies based on the DSM-V criteria may again alter the gender prevalence of the disorder. Secondly, study design needs to account for population sample bias, especially between community- and clinic-based samples, in order to better estimate the disease and gender prevalence across the world. Studies also need to be designed with the aim of defining the phenotypic differences and the direct impact of these on symptom reporting in order to tailor future practice and better recognise ADHD throughout the population. The same should apply to biological differences and response to management, both pharmacological and behavioural as the main examples, for more effective clinical practice. It should also be noted this discussion focused mainly on paediatric ADHD, however current literature has seen rapid growth in research into adults with ADHD, though it is limited with regards to the gender distribution in these populations. Similar to the evidence discussed above, it is reasonable to expect the gender ratios in ADHD prevalence to be similarly affected by referral or identification bias, poorly defined diagnostic criteria and biological differences. [27] On the whole, the consensus across current literature is a need for further investigation that can better define the prevalence of ADHD in our population and the influence, if any, of gender.

Conclusion

ADHD is an increasing burden of psychiatric disease for our paediatric population with a reported greater prevalence amongst male patients. The skewed gender distribution of the disorder has been widely varied due to differing diagnostic criteria, terminology and research methodology. The differences found illustrated variation in disease presentation and psychological comorbidities, as well as biological differences that may account for the variation in disease presentation between genders. Furthermore, there were differences in reporting of ADHD symptomatology between patient, parent, teacher and clinician as well as differing trends in management that may influence the recognition and treatment of ADHD across our population. Overall, these differences warrant further research to better understand ADHD and characterise the disease profiles between males and females for increased accuracy in identification, diagnosis and treatment in our population.

Acknowledgements

Many thanks to Associate Professor Christine Phillips for introducing students to the social foundations of medicine and promoting discussion on a gender perspective.

Conflicts of interest

None declared.

Correspondence

M Bokil: bokil.mug@gmail.com

References

[1] National Health and Medical Research Council. Clinical Practice Points on the diagnosis, assessment and management of Attention Deficit Hyperactivity Disorder in children and adolescents. Commonwealth of Australia; 2012.

[2] Australian Institute of Health and Welfare (AIHW). Children with disabilities in Australia. AIHW cat. no. DIS 38. Canberra: AIHW; 2004.

[3] Efron D, Davies S, Sciberras E. Current Australian Pediatric Practice in the Assessment and Treatment of ADHD. Acad Pediatr. 2013;13(4):328-33.

[4] Skounti M, Philalithis A, Galanakis E. Variations in prevalence of attention deficit hyperactivity disorder worldwide. Eur J Pediatr. 2007;116(2):117-23.

[5] Ramtekkar UP, Reiersen AM, Todorov AA, Todd RD. Sex and age differences in Attention-Deficit/Hyperactivity Disorder symptoms and diagnoses: Implications for DSM-V and ICD-11. J Am Acad Child Adolesc Psychiatry. 2010;49(3):217-28.

[6] Graetz BW, Sawyer MG, Baghurst P. Gender Differences Among Children with DSM-IV ADHD in Australia. J Am Acad Child Adolesc Psychiatry. 2005;44(2):159-68.

[7] Rucklidge JJ. Gender differences in attention-deficit/hyperactivity disorder. Psychiatr Clin North Am. 2010;33(2):357-73.

[8] McKeown RE, Holbrook JR, Danielson ML, Cuffe SP, Wolraich ML, Visser SN. The Impact of Case Definition on Attention-Deficit/Hyperactivity Disorder Prevalence Estimates in Community-Based Samples of School-Aged Children. J Am Acad Child Adolesc Psychiatry. 2015;54(1):53-61.

[9] American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, 5th edition. Arlington, VA: American Psychiatric Association; 2013.

[10] Sciutto MJ, Eisenberg M. Evaluating the Evidence For and Against the Overdiagnosis of ADHD. J Atten Disord. 2007;11(2):106-13.

[11] Coles EK, Slavec J, Bernstein M, Baroni E. Exploring the Gender Gap in Referrals for Children with ADHD and Other Disruptive Behaviour Disorders. J Atten Disord. 2012;12(2):101-8.

[12] Skogli EW, Teicher MH, Andersen PN, Hovik KT, Oie M. ADHD in girls and boys – gender differences in co-existing symptoms and executive function measures. BMC Psychiatry. 2013;13:298-309.

[13] Biederman J, Mick E, Faraone SV, Braaten E, Doyle A, Spencer T, et al. Influence of Gender on Attention Deficit Hyperactivity Disorder in Children Referred to a Psychiatric Clinic. Am J Psychiatry. 2002;159(1):36-42.

[14] Elia J, Ambrosini P, Berrettini W. ADHD Characteristics: I. Concurrent co-morbidity patterns in children and adolescents. Child Adolesc Psychiatry Ment Health. 2008;2(1):15-23.

[15] Halldorsdottir T, Ollendick TH. Comorbid ADHD: Implication for the Treatment of Anxiety Disorders in Children and Adolescents. Cogn Behav Pract. 2014;21(3):310-22.

[16] Werling DM, Geschwind DH. Sex differences in autism spectrum disorders. Curr Opin Neurol. 2013;26(2):146-53.

[17] Levy F, Hay DA, Bennett KS, McStephen M. Gender differences in ADHD subtype comorbidity. J Am Acad Child Adolesc Psychiatry. 2005;44(4):368-76.

[18] Cortese S. The neurobiology and genetics of Attention-Deficit/Hyperactivity Disorder (ADHD): What every clinician should know. Eur J Paediatr Neurol. 2012;16(5):422-33.

[19] Davies W. Sex differences in Attention Deficit Hyperactivity Disorder: Candidate genetic and endocrine mechanisms. Frontiers of Neuroendocrinology. 2014;35(3):331-46.

[20] Dupuy FE, Barry RJ, Clarke AR, McCarthy R, Selikowitz M. Sex differences between the combined and inattentive types of attention-deficit/hyperactivity disorder: An EEG perspective. Int J Psychophysiol. 2013;89(3):320-7.

[21] Subcommittee on Attention-Deficit/Hyperactivity Disorder, Steering Committee on Quality Improvement and Management, Wolraich M, Brown L, Brown RT, DuPaul G, et al. ADHD: Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. American Academy of Pediatrics. 2011;128(5):1007-22.

[22] Preen DB, Calver J, Sanfilippo FM, Bulsara M, Holman CDAJ. Patterns of psychostimulant prescribing to children with ADHD in Western Australia: variations in age, gender, medication type and dose prescribed. Aust N Z J Public Health. 2007;31(2):120-6.

[23] Salmelainen P. Trends in the prescribing of stimulant medication for the treatment of Attention Deficit Hyperactivity Disorder in children and adolescents in NSW. Sydney, NSW: Department of Health; 2002.

[24] Barbaresi WJ, Katusic SK, Colligan RC, Weaver A, Leibson CL, Jacobsen SJ. Long-Term Stimulant Medication Treatment of Attention-Deficit Hyperactivity Disorder: Results from a Population-Based Study. J Dev Behav Pediatr. 2006;27(1):1-10.

[25] Quinn PO. Treating adolescent girls and women with ADHD: gender-specific issues. J Clin Psychol. 2005;61(5):579-87.

[26] Babinski DE, Sibley MH, Ross JM, Pelham WE. The Effects of Single Versus Mixed Gender Treatment for Adolescent Girls with ADHD. J Clin Child Adolesc Psychol. 2014;42(2):243-50.

[27] Williamson D, Johnston C. Gender differences in adults with attention-deficit/hyperactivity disorder: A narrative review. Clin Psychol Rev. 2015;40:15-27.

Asthma is a common condition. Numerous studies have consistently demonstrated that refractory asthma, while constituting under 10% of all asthma patients, consumes a disproportionate amount of healthcare costs. It is therefore imperative for clinicians to be aware of common mimics of asthma that can present with similar symptoms leading to inaccurate assessment of asthma. One such mimic is vocal cord dysfunction, (VCD), which is the intermittent, abnormal adduction of the vocal cords during respiration. VCD can exist independently, but it frequently co-exists with asthma and consequently has been frequently misdiagnosed as asthma. The gold standard for diagnosing VCD is through direct visualisation via laryngoscopy, but there has been a move towards developing alternative non-invasive means of diagnosing VCD in the acute setting. This article reviews the literature surrounding VCD, including management options, both in the acute and long-term setting.

Introduction

Asthma is a common condition. In 2011-2012 the prevalence of asthma was measured at 10.2%, which approximates to about 2.3 million Australians. [1] By international standards, this is a high statistic, translating to a significant burden on the healthcare infrastructure. An estimated $655 million was spent on asthma in the 2008-09 financial year, accounting for 0.9% of the total allocated healthcare expenditure.

The aim of asthma management is to achieve good long-term control. However, evaluation of asthma control relies heavily on symptom assessment. [2] The National Asthma Council of Australia utilises the Asthma Score to gauge a patient’s asthma control, based on frequency of asthma symptoms, nocturnal symptoms, effect on activities of daily living, as well as use of reliever medication. [3] However, it is challenging to distinguish between poorly controlled or refractory asthma versus an alternative diagnosis with a similar presentation. As such, this reliance on symptom assessment as a measure of asthma control has its shortcomings.

Numerous studies conducted across several countries have consistently demonstrated that refractory asthma, while constituting under 10% of all asthma patients, consumes a disproportionate amount of healthcare costs. [4,5] This often occurs in the setting of treatment failure and escalation of drug therapy, as well as recurrent or prolonged hospital admissions. [6] Current management guidelines advocate for clinicians to consider issues surrounding compliance, technique, as well as to reconsider the possibility of an alternative diagnosis in the context of treatment failure. It is therefore imperative for clinicians to be aware of common mimics of asthma or co-morbidities that can present with similar symptoms leading to inaccurate assessment of asthma control. One such mimic is vocal cord dysfunction (VCD).

Vocal cord dysfunction

VCD is the intermittent, abnormal adduction of the vocal cords during respiration. [7,8] It can affect both inspiratory and expiratory phases, resulting in variable upper airway obstruction at the level of the larynx. [6] VCD has been described throughout the medical literature by several terms, including Munchausen’s stridor [9], factitious asthma, [10] and paradoxical vocal cord dysfunction. [11]

Dunglison first described it in 1842, referring to it as ‘hysteric croup’ at that time. [12] Subsequent authors documented similar descriptions of this presentation under various names in the medical literature, but it was Mackenzie who first visualised the paradoxical closure of the vocal folds with inspiration by laryngoscopic evaluation in 1869. [13] Interest in VCD resurfaced in 1974, when Patterson et al. demonstrated modern laryngoscopic evidence of this pathology. [9] However, it was only from 1983, following a case series by Christopher et al. [14], that VCD was formally described as a syndrome, prompting a surge in interest until today.

Epidemiology

There are no large population-based studies examining the prevalence of VCD. The lack of specific diagnostic criteria for VCD further confounds evaluation of its epidemiology, leading to a range of prevalence estimates between 2.5 and 22% derived from small studies. [15] Nonetheless, it has been reported to be more prevalent among females, and is common in persons between 20-40 years of age. [16]

VCD can exist independently, but it frequently co-exists with asthma. In the first large case series involving 95 patients, Newman et al. reported 56% of patients had co-existing asthma. [8] Similarly, Yelken et al. found that VCD was present in 19% of 94 asthmatic patients, compared to 5% in 40 control subjects. [17] Parsons et al. concluded from their study of 59 patients that VCD occurs across a spectrum of asthma severity and is also prevalent in mild-to-moderate asthmatics. [18]

Correspondingly, the literature is replete with reports of VCD misdiagnosed as asthma. In a review by Morris et al. up to 380 of 1161 (32.7%) patients with VCD were initially misdiagnosed and in fact that many patients only had VCD without underlying asthma. [16] Similarly, Newman et al. concluded that VCD was the reason for treatment failure in 30% of cases in their prospective evaluation of 167 patients with refractory asthma. Among these cases, one third exclusively suffered from VCD, while the rest had co-existing asthma. [8]

Diagnosing VCD

While the gold standard for diagnosing VCD is through direct visualisation via laryngoscopy [19], this is often not frequently utilised due to practical reasons. There has been a move towards developing alternative non-invasive means of diagnosing VCD in the acute setting. Diagnostic approaches such as methacholine provocation [20] and video stroboscopy [21] have not proven useful in providing conclusive evidence to aid a diagnosis.

There is limited utility in using pulmonary function tests to diagnose VCD in the acute setting, this difficulty also being due to VCD’s intermittent symptoms. VCD may reduce both the forced expiratory volume in one second (FEV₁) and forced vital capacity (FVC) with no change in the forced expiratory ratio (FER = FEV₁/ FVC), suggesting that such a pattern in a patient undergoing evaluation for asthma should raise the possibility of VCD. Yet, a reduction in FER as consistent with an obstructive pattern such as asthma also does not rule out concomitant VCD. [8,16,22]. A characteristic truncation of the inspiratory limb of the flow volume loop has also been described in symptomatic inspiratory VCD, with similar changes to the expiratory loops in expiratory VCD. However, a review by Morris et al. found such FVL changes to be present in only 28.1% of all VCD patients. [16]

Traister et al. developed the Pittsburgh Vocal Cord Dysfunction index as a clinical tool to aid clinicians in distinguishing VCD from asthma clinically. [23] Based on the largest to-date retrospective study comparing 89 patients with VCD and 59 patients with asthma, the authors identified clinical features such as dysphonia, throat tightness and the absence of wheezing as key distinguishing symptoms of VCD. The Pittsburgh VCD index had good sensitivity (83%) and specificity (95%), and accurately corresponded with 77.8% of laryngoscopy-proven VCD. [23]

However, Traister et al. also cautioned against the use of the scoring index in patients with both VCD and asthma. Numerous studies have concluded that differentiating one condition from the other based on symptomology can be challenging if both conditions co-exist. [14] For example, Parsons et al. found that classic VCD features like hoarseness and stridor occurred infrequently in patients with both conditions and did not necessarily distinguish between asthmatics with and without VCD. [18]

Clinicians can also utilise several clinical signs and simple bedside tests to aid diagnosis. Localisation of airflow obstruction to the laryngeal area via auscultation is an important clinical discriminatory feature in patients with VCD. In addition to that, the disappearance or reduction of wheeze with expiration against positive pressure (via a straw) when auscultating over the larynx would suggest an element of VCD.

The introduction of high resolution 320-slice CT has permitted visualisation of the moving anatomical structures. [24] Holmes et al. explored the possibility of utilising this to provide comprehensive and accurate images of vocal cord movement during respiration. In this study, dynamic 320-slice volume CT accurately identified VCD in 4 of 9 patients diagnosed with asthma. [24] Colour Doppler ultrasound of the vocal cords has also been suggested as a potential means of diagnosing symptomatic VCD, with accuracy approximating that of laryngscopy, according to one report. [25]

Management of VCD

Management of VCD first requires establishing the correct diagnosis.  While this may be difficult in the acute setting, it is imperative as continuing to treat for asthma will not yield any benefit.

Reassurance of the patient has been widely reported in numerous case reports as effective in terminating VCD in the acute setting. [10,26,27,28,29] Adopting breathing patterns such as panting, [30,31] diaphragmatic breathing or breathing against positive-pressure (through a straw, pursed-lip breathing) have also been described as effective measures to abort VCD symptoms acutely. Similarly, administering positive pressure ventilation via CPAP has been demonstrated in several case reports to resolve an acute attack. [32]

Benzodiazepines have been noted to be very effective in terminating VCD episodes, mainly for their anxiolytic and sedative effect. [16] Heliox, a mixture of oxygen and helium, has also been used to both treat and differentiate VCD from other causes of airway obstruction, with a rapid and effective response [33], however larger studies are lacking.

The long-term management of VCD revolves mainly around a multidisciplinary approach. Speech therapy has been identified as a mainstay treatment for VCD, with emphasis on vocal cord relaxation and breathing techniques. [34] Psychological interventions, such as psychotherapy, behavioural therapy as well as the use of anxiolytics and antidepressants have also been demonstrated in a systematic review to be useful adjuncts to speech therapy. [35]

There is a paucity of high quality randomised control trials studying therapeutic options for VCD. Botulinum toxin has been used to relieve symptoms of VCD in several cases, although its use is at present largely experimental due to the lack of research. Its neuromuscular effect of inhibiting acetylcholine release relaxes laryngeal muscles which lasts up to 14 weeks, facilitating inspiratory and expiratory airflow. [36] Baxter et al. evaluated the benefits of botulinum toxin in a small sample size of 11 patients with treatment resistant asthma and abnormal vocal cord movement. Asthma control test scores (a five-question self-administered tool), CT visualisation of vocal cord narrowing, as well as spirometry were used to evaluate response following botulinum toxin treatment. The study concluded that local treatment with botulinum toxin could be effective in these cases, although a placebo effect could not be ruled out. [37]

Conclusion

The novel utilisation of existing imaging techniques has facilitated the diagnosis of VCD, a condition that has been described since the 19^th century, yet it continues to remain a diagnostic challenge because it demands certain level of clinical suspicion prior to further workup.  There is also a lack of awareness of its existence and its presentation consequently has often been attributed to asthma. This is further complicated by its common coexistence with asthma, which can lead to unnecessary medication use without beneficial impact and increased health care utilisation.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

G Yong: glenn.yong.kw@gmail.com

References

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[6] Kenn K, Balkissoon R. Vocal cord dysfunction: what do we know? Eur Respir J. 2011 Jan 1;37(1):194–200.

[7] Newman KB, Dubester SN. Vocal Cord Dysfunction: masquerader of asthma. Semin Respir Crit Care Med. 1995;161–7.

[8] Newman KB, Mason UG, Schmaling KB. Clinical features of vocal cord dysfunction. Am J Respir Crit Care Med. 1995 Oct;152(4 Pt 1):1382–6.

[9] Patterson R, Schatz M, Horton M. Munchausen’s stridor: non-organic laryngeal obstruction. Clin Allergy. 1974 Sep;4(3):307–10.

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Introduction

Since the time of Semmelweis, it has long been realised that hands are the commonest vehicles for the spread of hospital-acquired infections (HAI). If all transmission opportunities, as defined by the World Health Organisation (WHO), were met with proper hand hygiene, the current incidence of HAIs could reduce by more than half. [1-3] Unfortunately, almost every hospital fails at this. Globally, the diverse roots of noncompliance in healthcare workers (HCWs) need to be tackled in a multifactorial way. Lack of resources, high-intensity workloads and ignorance about hand hygiene necessity or technique are often first to be blamed and rightly so, according to large studies in multiple countries. [4-6] However, in most Australian hospitals where regularly-replenished hand hygiene products sit at every bedside and informative posters are abound on corridor walls, compliance still remains at 82.2&. [7] Ajzen’s Theory of Planned Behaviour (TPB) proposes that it is not only the factors external to the individual, such as those aforementioned, but also internal behavioural factors that shape an individual’s hand hygiene practices. [8] These internal factors, often less explored than external factors, will be the topic of discussion.

 Centrality of Intention

The central thesis of TPB is this: the likelihood of performing a voluntary behaviour is best predicted by the intention to do it. [8] According to Ajzen, intention is the extent of effort one is willing to go to in order to achieve that action. [8] A 2012 Cochrane review and a landmark hand hygiene behavioural study by O’Boyle et al. demonstrates this positive association between intention and behavioural achievement. [15,16] Even so, it is imperative early in this discussion that we not assume that self-reported scores are good measures of actual compliance; in reality, the association is demonstrably poor because external factors do commonly prevent intention from actualising as behaviour. [15,17] However, external factors are not the focus here.

Intention is determined by three secondary internal factors – attitude, social norm and perceived behavioural control – that are, in turn, a function of beliefs based on one’s information about a behaviour. [14] We will now explore these factors in detail.

Attitude

Attitudes derive from an individual’s cognitive and emotional evaluation of behaviour. This evaluation, in turn, depends on the various positive or negative attributes and consequences the individual has associated with the behaviour. If HCWs perceive positive attributes about hand hygiene, the desirable attitudes this yields increases their levels of intention and correlate well with compliance. [6,14,15] One’s perceptions hinge on one’s beliefs about a behaviour. [14,15] Based on a focus group study of 754 nurses and a 2006 review, beliefs about hand hygiene can originate inherently or electively and account for 64% and 76%, respectively, of variation in intention. [18]

Inherent beliefs

During most individuals’ childhoods, exposure of hands to ‘dirtiness’ becomes ritualised as a trigger for disgust and the subsequent urge to cleanse one’s hands. Consequently, inherent patterns develop. [18-20] The toilet-training years may see a solidification of positive attitudes towards hand hygiene behaviours specifically in situations where individuals feel the instinctual need to ‘emotionally cleanse’ themselves. [18] This positive association appears consistent across diverse demographic groups. [21] However, what varies is each individual’s tolerance threshold of contamination before they feel the urge to cleanse, in accordance with culture, exposure to education and environment. [1] The 500 Australian respondents to a 2008 international hygiene beliefs survey on average scored one of the lowest levels of concern about “getting sick because of poor hygiene” and “being infected in contact with other people”. [22] Yet, a similar survey found that Australians do still place a strong emphasis on handwashing. [23] In reality, the hand hygiene standards promoted by Australian culture in general may be suboptimal to what is actually required for microbiological protection. It is common for nurses to only feel compelled to wash their hands after becoming ‘emotionally soiled’ from touching patients’ axillae, groins, genitals or excretions, if visibly contaminated, or from feeling moist or gritty, but not in other situations. [18] Although long-standing, developmentally-based inherent beliefs about dirtiness are possibly the most challenging of the psychological factors to address, one intervention could be the incorporation of emotionally evocative themes and slogans in infection control campaigns.

Compliance figures also suffer when the inherent belief associating hand hygiene with self-protection is undermined by products that have caused users pain, discomfort and/or the occasional hypersensitivity reaction. With the transition to the standardised use of emollient-containing alcohol-based handrubs (ABHR) across Australian healthcare facilities since 2008, the skin damage, irritation and dryness associated with handwashing with soap have dramatically reduced. [24-26] Although the addition of emollients to the ABHR solutions has greatly reduced associated stinging sensations and contact dermatitis, ABHRs remain painful to use for some, most likely due to improper use, having split or cracked skin, or allergic dermatitis. [26] Whatever the reason, the formation of new inherent beliefs that emotionally link pain and discomfort with correct hand hygiene behaviour continually works to worsen behavioural compliance. [1,27] It seems the only way to address this problem is to await advances in dermatological products in order to further enhance the dermal tolerance of ABHRs.

Elective beliefs

On the other hand, elective attitudes originate from beliefs that deliver the schema of hand hygiene over to choice. Elective beliefs measure various hand hygiene behaviours according to a less intuitive outcome of a higher order – microbiological self-protection proved by objective laboratory evidence. The opportunities for hand hygiene just after HCWs touch ‘emotionally clean’ parts of patients or inanimate surroundings, autoclaved equipment, hospital telephones or computers are the key targets of these elective beliefs. [18] Inherent disgust alone cannot be relied upon to stimulate enough intention in HCWs to engage in appropriate disinfection during these situations. Indeed, it is no surprise that hand hygiene opportunities that specifically relate to elective beliefs are the ones most frequently neglected by nurses, especially during peaks in workload. [18]

It seems the solution is not as simple as correcting inaccurate elective beliefs. In contrast with the way inherent beliefs naturally permeate one’s attitudes, translating elective beliefs into attitudes is often met with resistance. [18] Although the best targets for change would be unique for every HCW, some common determinants affecting elective belief-to-attitude translation have been identified. Firstly, elective beliefs regarding hand hygiene opportunities at work also tend to mirror hygiene beliefs about corresponding out-of-hospital situations. The more concerned a HCW is about handwashing before preparing a meal or after stroking pets or using a computer, the more likely they are to have positive attitudes about using the proper hand hygiene after ‘emotionally clean’ events at work. [18] Notably, the previously mentioned 2008 hygiene beliefs survey demonstrated Australians were amongst those who expressed the lowest concern for “hand hygiene while cooking and eating”. [22] Perhaps, infection control campaigns could be made more effective by challenging the household habits and beliefs of HCWs in addition to their usual chastisements targeting scenarios within the work context.

Secondly, although this subject requires further research, religious attitudes concerning hand cleansing rituals could also influence the elective beliefs of Buddhist, Hindu, Muslim and Orthodox Jewish HCWs. They are encouraged, if not commanded, to clean their hands for hygiene, usually following ‘unclean’ acts and meals. [1] Additionally, having a community-oriented mindset in favour of protecting others would also strengthen positive attitudes towards hand hygiene. [1] Although less than 7.3% of the Australian population affiliate with these religions and much of Western society tends towards individualistic ideals, [28] these findings could assist local campaigns in areas where there are more individuals within these target groups, for example, at hospitals located in culturally and linguistically diverse suburbs.

Lastly, a more modifiable aspect of elective beliefs that could strengthen good attitudes is having a solid understanding of the scientific evidence proving the microbiological protectiveness of hand hygiene. [20] Most awareness campaigns rely heavily on the positive association between good knowledge, belief in the strong efficacy of hand hygiene practices, and compliance. [1] The Australian National Hand Hygiene Initiative recommends “evidence-based education on all aspects of hand hygiene in healthcare” for student HCWs, and for local initiatives to help HCWs “understand the evidence underlying the recommendation” to use ABHRs. [29]

The evidence is up-to-date and irrefutable, the studies too countless to ignore. Proper hand hygiene curtails HAI rates dramatically. [3,30-38] Yet, despite awareness campaigns and convenient online access to the major literature, HCWs (mostly in developed nations) still cite the lack of convincing evidence as their reason for non-compliance. [18,20] There are several common reasons for this. The evidence base does lack randomised controlled trials (RCTs) that are hospital-based and double-blinded. However, such studies are unfeasible; it is impossible to blind subjects from their own hand hygiene practices, implementing a control group would clearly be unethical to patients, and it is extremely difficult to simulate a realistic hospital working environment (the lack of which may confound results). [39] Nevertheless, ample community-based open RCTs and cluster trials have produced sufficiently convincing, high-quality results. [40-44] Another common objection blames ABHRs for increasing the incidence of Clostridium difficile-associated diseases. However, this has long been epidemiologically refuted. [1,32,45-49] Perhaps the deepest reason why it is not sufficient to simply educate HCWs about the evidence of the benefits to patients is this – being convinced about the self-protective efficacy of elective hand hygiene motivates many HCWs much more than knowing its patient-protective efficacy does. This attitude has been a recurrent finding across the various age groups, levels of employment experience and backgrounds of scientific training. [18,20] It may do well for awareness campaigns to place even greater emphasis on evidence demonstrating the self-protective nature of hand hygiene.

Subjective Norm

The second determinant of intention is subjective norm – the perception of how positively hand hygiene is endorsed by the people one respects within the workplace. [15,50] Staff members viewed as role models have the greatest impact on a HCW’s subjective norm. In 2009, Erasmus et al. conducted focus group studies on 65 nurses, consultants, junior house officers and medical students across five hospitals. Although their study was Netherlands-based, Erasmus et al.’s analysis of the social norm dynamics occurring within a hospital environment still offers key insights into the interplay between subjective norms and compliance for Australian HCWs. The study subjects most commonly identified doctors and experienced nurses, such as nurse managers, as their role models for clinical practice. [20] Another study also identified hospital administrators as role models. [18] At a busy neonatal intensive care unit, staff intention to practise good hand hygiene significantly increased when senior staff members’ opinions on the practice were perceived to be more favourable. [51] Thus, mass improvement could be found in encouraging the role models of each workplace to be thoughtful in their speech, ideas and habits, especially when around their colleagues.

Conversely, Erasmus et al. also highlighted how negative role models have the greatest power over medical students and junior nurses. [20] Perhaps this is because junior members of the healthcare team are frequently the most sensitive and feel that their behavioural control (explored in the next section) is being limited whenever subjective norms are defined by negative role models. [52] For example, in the study, many medical students believed they were unable to satisfactorily disinfect their hands between seeing patients on ward rounds because they would otherwise fall behind the rest of the team. Furthermore, in attempts to assimilate into their working environments, students admitted to imitating hospital staff, particularly doctors, without questioning their actions first. These findings demonstrate how the cycle of noncompliance could persist from one generation of role models to the next. [20] It is possible that the pressure on students to imitate senior HCWs could arise from the heuristic method of teaching common in medical schools, as well as the professional expectation that senior doctors mentor junior doctors. Being encouraged to learn from supervisors opportunistically, students often slip into the habit of accepting all advice unfiltered. Students may benefit from being regularly reminded of this pitfall by their clinical preceptors.

Peer HCWs, although not role models, may also degrade subjective norms in a hospital by contributing to its ‘culture’ of noncompliance. A negative subjective norm rooted in so widespread an acceptance of noncompliance can inform the elective beliefs and attitudes of less-experienced HCWs who may be more vulnerable to believing whatever they observe to be correct. [20] A cross-sectional survey of 2961 staff revealed that doctors and nurses experienced a strong direct association between intention and peer pressure from within their own respective professions. [53]

There have been many interventional attempts to nurture a culture of compliance. Many Australian hospitals have designated ‘hand hygiene champions’ as culture-enforcers and role models. Infection control teams design encouraging posters and use frequent audits with feedback to staff in attempts to stimulate inter-ward competitiveness and a sense of shared responsibility about compliance. However, a subculture of resistance to these strategies has emerged. [54] It is not uncommon to hear staff comment with an undertone of rebellion, “I wash my hands for extra long when the infection control police are around.”

Perceived Behavioural Control

The third independent determinant of intention, perceived behavioural control, describes one’s self-perceived likelihood of performing an action. [15,51] As part of a focus group study, Australian nurses identified the most common external influences on their control over hand hygiene performance. Many felt they lacked the relevant training in infection control. They reported that regular education programs and simple “Five Moments” charts placed around wards would avert any growing misconceptions about the need for disinfection after touching patient surroundings and remind them when they forget or get distracted. [55] During peaks in busyness or emergencies, HCWs have also indicated having no time to adhere to every moment of hand hygiene. Other times, when in the middle of performing certain tasks, they may feel unable to interrupt the activity to go clean their hands midway. Lastly, disapproval of hand hygiene by senior staff, mostly doctors, was discussed as a salient issue in focus group studies. All these factors were negatively associated with intention, measured by self-reported compliance. [6,20,53,55,56]

There is an important distinction between one’s perceived control, dependent on internal cognisance of how external factors affect one’s behaviour, and the actual ability of control they have been afforded by these external factors; the two commonly differ. [57] The link between actual ability and internal cognisance is self-efficacy. For an individual already familiar with infection control theory and technique, self-efficacy manifests as the confidence to actually practise what they have learnt when it is required. Alternatively, interventions seeking to increase self-efficacy of HCWs who find themselves constrained by time restrictions or the overbearing opinions of senior staff may involve improving HCW assertiveness, knowledge about hospital policy regarding patient safety, and practise in escalating concerns with other staff. [57] Training could involve testing a student’s capacity to remind a HCW to decontaminate their hands after observing them failing to do so while on the wards. [57]

Summary

Why is it that HCWs fail to clean their hands? Using the TPB framework, we explored the internal behavioural factors underlying noncompliance. HCWs’ beliefs about hand hygiene are informed by elements both at work and in the community. These perceptions define attitude, subjective norms and perceived behavioural control, which predict intention to clean one’s hands. With this understanding, it is imperative that interventions addressing compliance do not ignore these modifiable influences on HCWs. Table 1 is a summary of interventions suggested in this article. Addressing the behavioural psychology of hand hygiene might just be the final nail in the coffin for hand-transmitted HAIs.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

R Aw-Yong: raelene.awyong@my.jcu.edu.au

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[55] White KM, Jimmieson NL, Obst PL, Graves N, Barnett A, Cockshaw et al. Using a theory of planned behaviour framework to explore hand hygiene beliefs at the ‘5 critical moments’ among Australian hospital-based nurses. BMC Health Serv Res. 2015;15(59); doi: 10.1186/s12913-015-0718-2.

[56] Ajzen I. Attitudes, Personality, and Behaviour: Mapping social psychology. Berkshire, England: McGraw-Hill International; 2005.

[57] Van de Mortel T. Development of a questionnaire to assess healthcare students’ hand hygiene knowledge, beliefs and practices. Aust J Adv Nurs. 2009;26(3):9-16.

Introduction

Discussion surrounding specialties of preference is commonplace in medical school, across all levels of training. Some are attracted to the breadth of care afforded in general practice, the in-depth expertise of organ systems in physician specialties, or the hands-on experience with human anatomy in surgery. A few of us however, appreciate the opportunity to care for patients by the bedside, followed by investigating their bodily samples under the microscope in search of an answer to their problems.

Belonging to the last group, I present this article which summarises my elective term experiences in haematology at the Olivia Newton-John Cancer & Wellness Centre and the Guy’s Hospital. This, I hope, will shed some light on haematology as a potential field of interest for medical students – one that many of us consider ‘exotic’ and thus, perhaps, less pursued.

Haematology – what’s in a specialty?

Haematology is an integrated discipline that incorporates both clinical and laboratory skills to diagnose and treat diseases of the blood and blood-forming (haematopoietic) organs. [1] The blood’s cellular components include the red blood cells, white blood cells and platelets, which are derived from the bone marrow in steady-state conditions. Extra-medullary haemopoiesis in the liver and the spleen occurs in certain disease states, for example in marrow failure syndromes and haemoglobinopathies. In addition, the coagulation factors, which assist clotting, are also an important part of the haematological system. Principally, haematologists treat disorders which arise from derangement of any of these blood components – too high, too low or dysfunctional – as a result of diverse pathological processes, broadly classified as malignant or non-malignant. [2]

Clinical exposure and latest research

To set the scene, my first placement took place at the Olivia Newton-John Cancer & Wellness Centre in Melbourne. A new addition to the Austin Health complex in 2013, it is a comprehensive cancer centre which offers a holistic approach to patient care. On top of routine clinical care, the Olivia Newton-John Cancer & Wellness Centre provides a range of wellness therapies, such as music therapy, art therapy and massage. [3] Following a short vacation, I then set off to London, where I undertook my second placement at the Guy’s Hospital, a major teaching hospital affiliated with King’s College London. Located in Central London, this is the hospital where Thomas Hodgkin once worked. [4] I would like to share interesting current trends in clinical haematology I came across whilst on this placement.

At the Guy’s Hospital, I was privileged to work with the Myeloproliferative Neoplasms (MPN) Unit, an internationally renowned centre for the care of patients with MPN spectrum: polycythaemia vera (PV), essential thrombocythemia (ET), and primary myelofibrosis (MF). The MPN are characterized by clonal proliferation of myeloid progenitor cells in the bone marrow and in many cases, liver and spleen. [2] The advent of rapid genome-wide sequencing has identified a number of important mutations responsible for these disorders, including mutations in the Janus kinase 2 (JAK2), the MPL proto-oncogene, thrombopoietin receptor (MPL), and most recently the calreticulin (CAL-R) genes. [5] A particularly important ‘newcomer’ for MPN treatment I encountered there was ruxolitinib, a JAK1/2 inhibitor, which has been licensed for MF since the landmark publication by Prof. Claire Harrison in 2012. [6] This paper demonstrates superior efficacy of ruxolitinib compared to conventional therapy (usually hydroxyurea), in improving splenomegaly and overall quality of life. In addition, there is some evidence that ruxolitinib may also improve survival in patients with MF, although this needs to be further investigated. [7] Witnessing patients’ experiences first hand in her MPN clinics was a fantastic experience; especially given the limited efficacy and increased complications experienced with hydroxyurea. [6] At the moment, the Guy’s Hospital and other centres of excellence in the UK and Europe are running further clinical trials assessing the use of ruxolitinib in PV, with promising results reported in a recent study. [8] With corroborative studies, it is anticipated that ruxolitinib will be incorporated into the standard of care for patients with PV as well.

On the other hand, I spent most of my placement time at the Olivia Newton-John Cancer & Wellness Centre on ward service. An important lesson I took away is the clinical care of serious infections in haematology patients. Febrile neutropenia is the most common and important infective issue suffered by up to 80% of neutropenic patients with haematological malignancies on chemotherapy. [9,10] Primary haematological disease, along with high-dose chemotherapy, results in profound neutropenia, putting patients at risk of invasive bacterial infections. Compounding this risk is chemotherapy-induced gastrointestinal damage, which allows for translocation of enteric bacteria into the blood, causing bloodstream infections. [11] In particular, bloodstream infections with the extended-spectrum beta-lactamase and the carbapenemase-producing Gram-negative bacteria pose significant issues as these pathogens are resistant to empirical therapy for febrile neutropenia (which is commonly a broad-spectrum cephalosporin-based regimen with an anti-pseudomonal cover). [12] Increased mortality risk with these multi-resistant organisms is related to delays in delivering appropriate antibiotic therapy. [13] Indeed, we observed one case of bloodstream infection caused by an extended-spectrum beta-lactamase producing Gram negative bacteria, in which the patient remained febrile after 48 hours of empirical therapy with piperacillin/tazobactam, prompting the switch to a carbapenem-based therapy, allowing an adequate antimicrobial cover (luckily the isolate did not harbor a carbapenemase-producing bacteria as well). Antimicrobial stewardship and adequate infection control measures are required to prevent further problems with multi-resistant organisms, which has been an initiative worldwide today, including in Australia. [14]

Reflections on the elective placements

An elective placement will not be complete without reflecting on what I have learnt whilst there to make me a better doctor in the future.

First, I have come to truly appreciate the importance of research in clinical medicine. Research, both laboratory-based and clinical, provides the essential foundation of what we know at present of diseases and their appropriate management. As an intern candidate sitting interviews in two months time, the way I view my research involvement has been affirmed – it is no longer merely a ‘selling point’ in my curriculum vitae, rather it is something I am truly proud of – it is a contribution to humanity which I certainly would like to keep up. Haematology, in particular, is a very active field of scientific enquiry. In both centres I attended, there are numerous clinical trials that are still actively recruiting patients at the time this article is written. In recent years, ‘targeted therapy’ and ‘immunotherapy’ have taken the centre stage and my experience with ruxolitinib described above is one example.

Secondly, good communication skills are crucial for best patient care, especially in haematology. In such a discipline with high throughput of novel, potentially superior therapy, at times quality of life may be neglected (unintentionally) for ‘overall survival’, which is often used as a measure of treatment success. A career in haematology hence requires the ability of not only to offer hope via new therapy, but also to limit further suffering by the same token. Taking the time to empathically listen to patients’ wishes is very important, along with careful considerations on the potential benefit and side effects of the therapy on offer.

The natural history of malignant haematological disorders often alternates between periods of remission and relapse – at which a new treatment modality is usually offered. However, it is not uncommon that these ‘salvage therapies’ are offered on a clinical trial basis, where there is an uncertainty of whether or not we are doing more good than harm. Numerous times I had observed careful, empathetic listening followed by the question ‘is this what you really want?’ which revealed the true desire of our patients – that they prefer to embrace the time that remains free of side effects (nausea and fatigue are common ones) and are able to treasure their loved ones with minimal medical interventions. In such cases, close liaison with palliative care services is crucial in ensuring that we always act in our patient’s best interest. Having learnt this firsthand observing the consultants I had worked with in my electives, I most certainly will remember to put my patients’ (true) wishes first in my future practice.

So you want to be a haematologist (in Australia)?

There are three training pathways available in the Australian system (Figure 1). I will briefly discuss the joint RACP/RCPA training pathway here as it is the most commonly chosen pathway, and was the only pathway the registrars I worked with had undertaken. [15]

Figure 1. Haematology Training Pathways in Australia. Haematology affords a wide range of career options and subspecialties depicted here are by no means exhaustive. Please refer to www.racp.edu.au and www.rcpa.edu.au for a comprehensive overview of these training pathways.

After completing their Basic Physician Training (BPT) program, candidates are eligible to apply for the joint RACP/RCPA accreditation in haematology. This involves the completion of four years of advanced training in haematology, usually comprised of two years each of clinical and laboratory training (minimum requirements of two years and one year in laboratory and clinical haematology training, respectively). [15]

In addition to the RACP written and clinical examinations taken in the final year of BPT, joint accreditation trainees are required to complete the RCPA haematology part I and part II pathology examinations after at least 18 months of accredited laboratory training. [15] The part I examination includes written, morphology, ‘wet’ and ‘dry’ practical examinations plus a viva, while the part II examination includes a dissertation and a viva. Hence, those considering haematology as a vocation should take this component of the training into consideration – there will be pathology exams!

Pathways that follow to ‘consultanthood’ vary, with many fledgling haematologists pursuing further training through fellowship appointments or a Doctor of Philosophy degree (PhD). As a result, haematology affords a wide range of career destinations and many subspecialisations (Figure 1). Those who choose to work as a clinical haematologist provides inpatient and outpatient care, whilst laboratory haematologists hold supervisory role in accredited laboratories. Finally, private practice is also very common in Haematology, allowing for flexibility in matching vocational aspirations with personal pursuits.

For a more comprehensive overview of these training programs, please refer to the RACP (www.racp.edu.au) and RCPA (www.rcpa.edu.au) websites.

In summary, haematology is an attractive specialty as in many cases the haematologist has the satisfaction of seeing a patient clinically, making a diagnosis by looking at his/her patient’s blood and finally, offering appropriate treatments. Aligned with a previously published British article by O’Connor and Townsend [16], I think we agree that Haematology is, definitely, a specialty worthy of consideration.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

A Tedjaseputra: adityat@student.unimelb.edu.au

References

[1] Haematology – Advanced Training Curriculum – Adult Medicine Division/Paediatrics & Child Health Division. Sydney, New South Wales: The Royal Australasian College of Physicians; 2013.

[2] Hoffbrand AV, Moss PAH. Essential Haematology. 6 ed. Hoffbrand AV, Moss PAH, editors. West Sussex, UK: Wiley-Blackwell; 2011.

[3] Olivia Newton-John Cancer & Wellness Centre: About Us Melbourne, Australia: Austin Health; 2015 [cited 2015 19 March]. Available from: http://www.oliviaappeal.com/About-Us.aspx.

[4] Stone MJ. Thomas Hodgkin: medical immortal and uncompromising idealist. BUMC Proceedings. 2005;18:368-75.

[5] Klampfl T, Gisslinger H, Harutyunyan AS, Nivarthi H, Rumi E, Milosevic JD, et al. Somatic mutations of calreticulin in myeloproliferative neoplasms. N Engl J Med. 2013;369(25):2379-90.

[6] Harrison C, Kiladjian J-J, Al-Ali HK, Gisslinger H, Waltzman R, Stalbovskaya V, et al. JAK Inhibition with ruxolitinib versus best available therapy for myelofibrosis. N Engl J Med. 2012;366(9):787-98.

[7] Verstovsek S, Mesa RA, Gotlib J, Levy RS, Gupta V, DiPersio JF, et al. Efficacy, safety, and survival with ruxolitinib in patients with myelofibrosis: results of a median 3-year follow-up of COMFORT-I. Haematologica. 2015;100(4):479-88.

[8] Vannucchi AM, Kiladjian JJ, Griesshammer M, Masszi T, Durrant S, Passamonti F, et al. Ruxolitinib versus standard therapy for the treatment of polycythemia vera. N Engl J Med. 2015;372(5):426-35.

[9] Lingaratnam S, Slavin MA, Koczwara B, Seymour JF, Szer J, Underhill C, et al. Introduction to the Australian consensus guidelines for the management of neutropenic fever in adult cancer patients, 2010/2011. Australian Consensus Guidelines 2011 Steering Committee. Intern Med J. 2011;41(1b):75-81.

[10] Freifeld AG, Bow EJ, Sepkowitz KA, Boeckh MJ, Ito JI, Mullen CA, et al. Clinical practice guideline for the use of antimicrobial agents in neutropenic patients with cancer: 2010 update by the infectious diseases society of america. Clin Infect Dis. 2011;52(4):e56-93.

[11] Blijlevens NM, Donnelly JP, De Pauw BE. Mucosal barrier injury: biology, pathology, clinical counterparts and consequences of intensive treatment for haematological malignancy: an overview. Bone Marrow Transplant. 2000;25(12):1269-78.

[12] Tam CS, O’Reilly M, Andresen D, Lingaratnam S, Kelly A, Burbury K, et al. Use of empiric antimicrobial therapy in neutropenic fever. Australian Consensus Guidelines 2011 Steering Committee. Intern Med J. 2011;41(1b):90-101.

[13] Mikulska M, Viscoli C, Orasch C, Livermore DM, Averbuch D, Cordonnier C, et al. Aetiology and resistance in bacteraemias among adult and paediatric haematology and cancer patients. J Infect. 2014;68(4):321-31.

[14] Gottlieb T, Nimmo GR. Antibiotic resistance is an emerging threat to public health: an urgent call to action at the Antimicrobial Resistance Summit 2011. Medical Journal of Australia. 2011;194(6):281-3.

[15] Advanced Training in Haematology Sydney, New South Wales, Australia: The Royal Australasian College of Physicians; 2015 [cited 2015 April 25].

[16] O’Connor D, Townsend W. A career in haematology. [Internet]. London: British Medical Journal; 30 Dec 2009. [cited 2015 31 May]. Available from: http://careers.bmj.com/careers/advice/view-article.html?id=20000625#

Medicine is both an art and a science. While modern medical training teaches the scientific and technical aspects of medicine well, the humane aspects of medical education remain relatively neglected at university level in Australia. “Medical humanities” and “narrative medicine” have been proposed as solutions to correct this imbalance. The inter-disciplinary field of “medical humanities” brings the perspectives of academic disciplines within the humanities to bear on medical practice. “Narrative medicine” teaches us how to hear our patients’ stories and how to respond to
them. These approaches provide crucial opportunities to develop attention to narrative, critical thinking and empathy, and thus to deploy the scientific tools of medicine more wisely.

“The art of tending to the sick is as old as humanity itself.”

 ~ Goldman Cecil’s Medicine [1]

The practice of medicine is both an art and a science. Both aspects require due attention, but throughout my
university medical training it always seemed clear that scientific and technical topics were considered more important. After all, they received the majority of attention in the curriculum, and were more thoroughly examined. Important topics such as bioethics, social determinants of health, and the history and philosophy of medicine were balanced precariously at the periphery of our studies or even absent from the core curriculum.

Modern medical training emphasizes the scientific, technical and practical. Although patient communication, empathy and professionalism are rightfully given prominent places in modern medical school curricula, these are approached in typically pragmatic fashion – for example, how might one convey the impression of interest to a patient? We learn how to sit, how often to nod, when to make eye contact, and what we might say to appear to be listening. The evidence of my patient communication tutorials is scribbled in the margin of my first year textbook: “I see …”, “please go on …”, and “mm-mm …”. We learn this by rote, like everything else. This is an excellent place to start. But why bother at all? Mostly, we talk in terms of establishing rapport, taking better medical histories and improving the end results for our patients. However we never discussed the bigger questions that underlie all this effort to appear caring, for example, how to stimulate and sustain genuine interest in the endless stream of people we will meet as patients, let alone why we seek to relieve suffering or value human life at all.

From my own experience as a student, peer reviewing reflective essays or participating in tutorial discussions, the result of this heavily unbalanced emphasis is that medical students think no more subtly about important ethical issues in medicine than the typically hackneyed discussions one reads in the newspapers. This is despite our experiences with doctors and patients everyday in clinic and hospitals, for whom these are not abstract issues. For example, when discussing dilemmas encountered by doctors who are religious, someone may always be relied upon to pipe up with the peculiar remark that doctors ought to leave their personal values at home and not bring them to work – as if the doctor with no values was anything other than monstrous to contemplate. Why aren’t we able to transform this abundance of clinical experiences into better thinking on “big” questions? This mediocrity in critical thinking and imagination is dangerous for both our future patients and ourselves. However, the issue is larger than simply a lack of time for bioethics in the curriculum. The loss of space in the curriculum for this endeavor is but one manifestation of the lack of importance accorded to the humanities as a whole in medical training.

“Medical humanities” and “narrative medicine” have proposed themselves as solutions to this lack of the humane in modern medicine, to balance its increasing focus on the reductionist and scientifically technical. [2-3] Here I address the question of what it means to recover the sense of our profession as a humane art, especially via narrative medicine.

What are the medical humanities and narrative medicine?

Training in narrative medicine and medical humanities now forms part of the core curriculum at more than half of all North American medical schools. [4] However, despite the considerable influence of these fields in Europe and America, the concepts remain little known in Australia. “Medical humanities” refers to the interdisciplinary fields created when the perspectives of the humanities, social sciences and the arts, such as literature, history, music, languages, theology and fine art are brought to bear on medical practice and other areas relevant to healthcare. [5]

“Narrative medicine” in turn belongs within the wider field of the medical humanities. It is more than simply the observation that patients and their illnesses have stories, but this simple statement is where it all begins. The field of narrative medicine grew out of the work of physician Rita Charon who formally defined “narrative medicine” as medicine practised with “narrative competence”, that is, “competence to recognize, interpret, and be moved to action by the predicaments of others”. [6] Elsewhere, Charon describes narrative medicine more simply as “medicine practised by someone who knows what to do with stories”. [7] Training of medical professionals in this field teaches the application of formal literary theory and creative writing skills to the situations and interactions commonly encountered in medicine, as well as various interpersonal skills. To this end, the narrative medicine program directed by Charon at Columbia University trains participants in “close reading, attentive listening, reflective writing, and bearing witness to suffering”. [7]

One way of understanding about how to “do” narrative medicine is conceived in terms of three “movements” – attention, representation and affiliation. [7] Attention refers to the skill, when in the presence of our patients, of absorbing as much as possible about their condition. We recognize this as what we do during the observation phase of physical examination, for example. Representation refers to the act of writing about patients and our clinical experiences, “taking chaotic or formless experiences and conferring form”, for example as prose or poetry, a piece of written dialogue, or even as an obituary. This process creates meaning from our experiences. Finally, affiliation refers to “authentic … connections between doctor and patient”.

First movement: attention

Observation is the first step in any medical examination, and all-too easily overlooked when one is learning. All medical students soon develop some favourite trick for overacting this step during OSCEs, to impress our keen skills of observation upon the examiners. But how is one really to develop this skill? The obvious answer is by practice and experience with observation of real patients on the wards – learning to see the walking aids, asthma puffers, sputum containers, hearing aids and every other manner of salient item in the jumble of medical equipment and personal items at the patient’s bedside.

However, it is also possible to practice the skills required for observation in medical contexts in other settings, such as art galleries and museums. This approach was developed at U.S. medical schools, to teach skills such as objective observation, communication, disagreeing respectfully with peers and managing ambiguity. At the University of Melbourne, a method first developed at Harvard University (“Training the Eye”) is being used at the university’s Ian Potter art gallery for improving the observation skills of medical and dental students. [8] This program is based on the hypothesis that the process of understanding a complex, narrative-based painting requires many of the same skills as required for medical diagnosis. Access to this training is not routine for medical students, but can be sought out in elective sessions at the medical school’s annual student conference. In one such session, we used the wonderfully intriguing painting “Bushrangers”, painted by William Strutt in 1852. It is not immediately clear that the painting involves a highway robbery in what is now downtown St Kilda in Melbourne; drawing this inference requires deliberate searching through the painting’s details and debate about the significance of aspects of the painting with others. This approach has been shown substantially to improve the observation skills of medical students. [9] It is useful not only for observing our patients, but for a variety of other situations, such as understanding medical imaging and communicating our findings to colleagues and patients.

Second movement: representation

A crucial aspect of narrative medicine is learning to write about one’s practice and patients. Opportunities to develop this skill begin during medical school with reflective writing exercises about our clinical experiences and patient encounters. Another way to improve one’s own writing, apart from regular practice through reflective writing, is to read published examples of this kind of writing, of which endless excellent examples by both doctors and patients are available.

The genres of narrative medicine have been classified in various ways. One simple classification recognizes four different genres. [10] Firstly, there are the classic illness narratives that patients write about being sick, and which might include surrounding circumstances explaining how they were diagnosed, how they were treated, how they coped and the impact it had on them and their families.  An excellent, recent Australian contribution to this genre is Myfanwy and Donald Horne’s experience of Donald’s palliative care for chronic obstructive pulmonary disease (COPD), and the aftermath, chronicled in, “Dying: a memoir”. [11] Helen Garner’s “Spare Room” is an interesting Australian variation on the patient memoir, written from the perspective of a concerned friend. [12] “The diving bell and the butterfly”, Jean-Dominique Bauby’s compelling memoir of locked-in syndrome, is a classic in the genre. [13]

Secondly, many doctors write about their experiences of caring for their patients. Many will be familiar with the thoughtful writing of the Melbourne-based oncologist, Ranjana Srivastava, both in her regular newspaper column and her books, such as “Tell me the truth: conversations with my patients about life and death.” [14] The delightful books of Oliver Sacks, detailing the curious cases he encountered in his long practice as a neurologist, such as “The man who mistook his wife for a hat” also belong within this genre. [15] “The hospital by the river: a story of hope” by Catherine Hamlin about establishing the Ethiopian fistula hospital with her husband is a must-read for Australian medical students [16]; I found a copy on the midwives’ shelves during my obstetrics term and read it late at night between calls to labour suite. There are memoirs at all level of practice; the notorious memoir of life as a junior doctor in an American hospital, “House of God”, is by now legendary, along with its questionable additions to the medical vocabulary. [17]

Thirdly, there are doctor-patient narratives. These are narratives which show how not only the patient’s perspective on their illness, but also how their experience of illness was affected by the interaction with their doctor. These make us aware of how our reactions to patients and explanations of their symptoms can affect a patient’s understanding and experience of their illness. These narratives form in the interplay between doctor and patient in the taking a history, and in forming a diagnosis. Both the doctor and patient will begin to form stories about the illness in this process, which will necessarily be changed by the therapeutic encounter. This might be observed, for instance, when a newly diagnosed patient commonly asks whether anything might have been done to prevent their illness – did they do something to cause it – are they somehow to blame?

Lastly, we need to be aware of meta-narratives, which are the grand, over-arching stories our societies and cultures tell about illness and health, and which provide a framework within which we conceive and construct our own stories. A classic work in this area is Susan Sontag’s seminal “Illness as metaphor”, which examines the power of metaphor and myth in cancer, and was written during her own experience (we will not say “battle”) with cancer. [18] Arthur Frank’s “The Wounded Storyteller” is likewise a seminal text, as a collection of essays discussing the roles and limitations of different categories of illness narratives, and written in light of the author’s own experience of serious illness. [19] Jonathon Miller, although understandably better known for his influential stage production of Gilbert and Sullivan’s The Mikado starring an operetta-singing Eric Idle as Ko-Ko, was also a neurologist. His multi-series documentary and book “The body in question” is another influential endeavor in the genre of medical metanarrative, dealing as it does with metaphors of illness, and cultural ideas about the body. [20]

Third movement: affiliation

How then does one “do” narrative medicine in daily medical practice? The most important element in building the required therapeutic affiliation with patients in narrative medicine is “a specific openness to towards patients and their narratives”. [10] Charon notes that when she began to try this approach with her own patients, she asked only one question during the initial consultation: “I have to learn as much as I can about [your] health. Could you tell me whatever you think I should know about your situation?”. [21] While most of us would worry about the extra time it would take in a consultation if patients were allowed to speak without direction, one study showed that two minutes was long enough in General Practice for 80% of patients to explain all of their concerns, if the doctor was trained in active listening and even if the patients had complex medical concerns. [10] Nevertheless, ensuring that a consultation with a patient “meets both narrative and normative requirements” is unquestionably difficult and requires training and daily practice. [22]

Proponents of narrative medicine argue that literature is an important way to develop the narrative mindset for medical practice of this kind. The touted benefits to doctors of reading “good books” include that reading offers a wider experience of life than one may encounter in the everyday of a single lifetime. [23] The narrative perspective, it is claimed, also has the potential to develop the imagination on which empathy depends, by crossing barriers into the inner lives of others in a way that is not possible in real life, even with the unique insights into others’ lives provided by medical practice. [23] It is also said that literature can also refine moral perception, and teach one to manage with ambiguity and paradox. [24] However, despite these optimistic expectations, medical students have proven resistant to the projected benefits of reading for this purpose. The obviously frustrated authors of one study document students refusing to participate in their carefully prepared class (“the literature we selected would have made Tolstoy proud”). They had hoped to discuss passages from novels covering themes such as illness, family violence race, gender, social class and sexual identity. [25] The students responded in a way that will be familiar to any of us who have attended classes on topics commonly deemed by the student body to be “fluffy” – questioning the basis of the class, not taking it seriously, treating presenters with disrespect and even not attending the class. Some of this resistance is laudable – the impatience of the practically-minded for weasel words and time wasting, and a weariness with endless jostling to advertise various medico-political agenda within our curriculum. However, it is also likely that the resistance arose, as the authors suggested, from a refusal to persist with uncomfortable topics which also ask a group of students who see themselves as triumphant meritocrats to reflect on the undeserved social advantages that have enabled them to study medicine at all.

Conclusion

Much has been claimed for the benefits of narrative medicine. However, writers in the field caution against over emphasizing the artificial dichotomies of humanities versus the sciences, the subjective versus the objective, the clinical and reductionist versus the human and holistic. [26,27] Competent medical practice necessarily requires compassion and imagination, and cannot avoid “big” questions such as the nature and meaning of pain, suffering and death. However, a doctor who is able to respond usefully to these fundamental questions requires training and skills beyond the merely technical and scientific. Other potential benefits suggested for this approach include the preservation of empathy throughout medical training, reduced doctor burnout, exhaustion and disillusionment, and better outcomes for our patients. [4]

How can we learn narrative medicine? At medical school, this might be about making time to read widely and explicitly resisting the pressures towards reductionism and technical focus. Another important way to preserve and develop narrative sensibilities is by writing about our own clinical experiences and patients. An obvious example in this respect is simply to take reflective writing opportunities seriously, and to expect high standards of writing from others when asked to give peer feedback. For junior doctors, opportunities for joining Balint groups at hospitals or during GP training are also becoming more widespread. These small groups meet to present and discuss cases from members’ own practice, with focus on narrative, the doctor-patient relationship, and self-reflection. [28] However, the options in Australia for formal academic training in the humanities, as a medical student or doctor, are limited. The only explicit university program in medical humanities in Australia is at the University of Sydney, which offers “health humanities” as a specialization in the Masters or Graduate Diploma of Bioethics. [29] Another option is attendance at shorter workshops that overseas institutions offer from time to time, and which we might seek out during study leave. The most well-established of these are those offered at mid-year at the University of Columbia Medical Center in the U.S. [30]

Medicine practiced without attention to the humane has the potential to harm both our patients and ourselves. While science provides us with safe, effective tools to deploy in medical practice, the humanities teach us how to use them wisely. [31] Currently, university medical training focuses on the former, with limited opportunities to develop the attention to narrative, critical thinking and empathy which help us to develop wisdom in response to clinical experience. Oliver Sacks summaries this aptly, “With the rise of technological medicine and all its wonders, it is equally important to preserve the personal narrative, to see every patient as a unique being with his own history and strategies for adapting and surviving. Though the technical terms may evolve and change, the phenomenology of human sickness and health remains fairly constant …” [15]

References

[1] Goldman L, Schafer AI. Cecil Medicine: Elsevier Health Sciences; 2011. p2.

[2] Hooker C. The medical humanities: a brief introduction. Aust Fam Physician. 2008;37(5):369-70.

[3] Charon R. Narrative medicine – A model for empathy, reflection, profession, and trust. JAMA. 2001;286(15):1897-902.

[4] Divinsky M. Stories for life: introduction to narrative medicine. Can Fam Physician. 2007;53(2):203-5, 9-11.

[5] Gordon J. Medical humanities: to cure sometimes, to relieve often, to comfort always. Med. J. Aust.. 2005;182(1):5-8.

[6] Charon R. Narrative medicine: Form, function, and ethics. Ann. Intern. Med. 2001;134(1):83-7.

[7] Charon R. What to do with stories – The sciences of narrative medicine. Can Fam Physician. 2007;53:1265-7.

[8] Gaunt H. Medicine and the arts: Using visual art to develop observation skills and empathy in medical and dental students. University of Melbourne Collections. December 2012(11).

[9] Naghshineh S, Hafler JP, Miller AR, Blanco MA, Lipsitz SR, Dubroff RP, et al. Formal art observation training improves medical students’ visual diagnostic skills. J Gen Intern Med. 2008;23(7):991-7.

[10] Kalitzkus V, Matthiessen PF. Narrative-based medicine: potential, pitfalls, and practice. Perm J. 2009;13(1):80-6.

[11] Horne D, Horne M. Dying: A memoir. Melbourne: Penguin; 2007. 276 p.

[12] Garner H. The Spare Room: A Novel. New York: Henry Holt and Company; 2009. 192 pp.

[13] Bauby JD. The Diving Bell and the Butterfly. New York: Random House; 1997. 131 p.

[14] Srivastava R. Tell Me the Truth: Conversations with my Patients about Life and Death. Melbourne: Penguin; 2010. 320 p.

[15] Sacks O. The Man Who Mistook His Wife For A Hat: And Other Clinical Tales. New York: Simon & Schuster; 1998. 243 p.

[16]]    Hamlin C, Little J. The Hospital by the River. Sydney: Pan Macmillan; 2008. 308 p.

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[20] Miller J. The body in question. London: Jonathan Cape; 1978. 352 p.

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At face value the word futility is deceptively simple, inviting synonyms such as useless, pointless, and ineffective. [1] The concept is not new, with Hippocrates espousing the importance of avoiding futile treatment measures over two thousand years ago: “Refuse to treat those who are over-mastered by their disease, realising that in such cases medicine is powerless.” [2] It was not until the 1980s that the term “medical futility” began to receive significant attention in the medical literature. [3,4] Despite several decades of debate and hundreds of articles dedicated to the subject, the concept of medical futility remains ambiguous. [4,5] Several competing concepts and definitions have been proposed, however each of these has been subject to criticism and has ultimately failed to produce significant agreement. Increasingly, the philosophical definition of futility is proving inconsequential when applied in a clinical context. Ongoing attempts to reach a consensus distract from more significant practical issues. These include resource rationing and how best to manage conflict over patient demands for treatments that healthcare providers deem to be medically inappropriate. [5,6]

Back to basics

The Oxford Dictionary definition of futility is seemingly straightforward, defining futile as “incapable of producing any useful result; pointless”. [7] Deeper consideration reveals that not only is futility by this account difficult to quantify with certainty, it is also extremely subjective and value-laden. [8] Given the capacity for humans to occasionally defy medical odds it is almost impossible to declare with complete confidence that a treatment is “incapable of producing any useful result”. Ewer proposes that “in seeking a universal definition of medical futility, we may be drawing an arbitrary line in a continuum; we seek the comfortable position of declaring futility exists or does not, and we cannot always make that determination”. [9] The inability to reach a universal understanding of futility despite several decades of discussion in the literature supports this assertion that futility definitions are inherently arbitrary.

Further complicating the debate is the lack of consensus as to which group of patients the concept of futility applies. Theoretically, futile treatment could be used to describe any intervention that is performed without being medically indicated. [3] Overall however, the medical literature generally considers a more limited application of futility as it applies to life-sustaining treatments. [3] Some authors argue that defining futility in the context of end-of-life measures unnecessarily clouds the debate with emotion and is partly responsible for the confusion surrounding its meaning. [10]

Paternalistic origins

While the definition of futility is often cited as the point of contention, the central issue in the futility debate is actually the authority and role of doctors in making decisions to withhold or withdraw treatment. [3] Original attempts to define medical futility aimed to provide a clear legal and ethical framework within which doctors could reasonably deny or withdraw medical therapy based solely on clinical indications for treatment, irrespective of patient preferences. [3,6] Doctors were given the power to make abstention decisions over the objections of competent patients based on their medical expertise. Unsurprisingly, this concept of medical futility drew heavy criticism on the basis that it invites medical paternalism and the imposition of doctors’ personal values on patients. [3]

Physiological futility

The concept of futility was subsequently revised to that of “physiological futility”. According to this definition, a futile treatment is one that is incapable of achieving its intended biological aim. [4,6] The medical expertise of doctors was still given central importance, but this definition aimed to remove subjective quality-of-life judgements from the decision-making process and provide an objective account of medical futility. [3,11] Prognostic scoring systems were touted as a means of substantiating futility assessments through empirical data. [3] The physiological futility model also drew criticism as it failed to account for individual deviations in predicted outcome (i.e. the patients that “defy the odds”). [3] Furthermore, subjective assessment still exists, as data supplied by prognostic scoring systems requires interpretation and integration with subjective evaluations to be applied to the individual patient. [3]

Quantitative and qualitative futility

Contributions by Schneiderman et al. in the early 1990s introduced the concepts of qualitative and quantitative futility into the debate. Schneiderman quantified a level at which abstention decisions could be justified, proposing that an intervention is quantitatively futile when: “physicians conclude (either through personal experience, experiences shared with colleagues or consideration of reported empiric data) that in the last 100 cases, a medical treatment has been useless.” [12] Opposition to the quantitative futility definition (and indeed any definition based on prognostic scoring systems) centres on the idea that such definitions create “self-fulfilling prophecies”. [6] If life-sustaining treatments are denied because of an anticipated high probability of death, the subsequent observed mortality rate will be artificially increased. [6]

Schneiderman went on to state that “any treatment that merely preserves permanent unconsciousness or that fails to end total dependence on intensive medical care should be regarded as nonbeneficial and, therefore, futile”. [12] In proposing a quality-of-life based minimum standard against which futility could be measured the authors present the concept of qualitative futility as an alternative to quantitative futility. [3,4]

Procedural approach to futility

The procedural approach to futility moves away from semantics, focussing instead on the processes by which ethical arguments are addressed. This emphasis on procedure over terminology emerged as it became apparent that reaching consensus on a futility definition was unrealistic. [3,4] The procedural approach promotes the establishment of processes and strategies aimed at minimising conflicts and resolving disputes related to medical futility. The utility of this method led to its adoption by a number of hospitals and endorsement by the American Medical Association [4]: “Since definitions of futile care are value laden, universal consensus on futile care is unlikely to be achieved. Rather, the American Medical Association Council on Ethical and Judicial Affairs recommends a process-based approach to futility determinations.” [4,13] Also known as the “due process approach”, this model avoids defining criteria for denying or withdrawing treatment. [6] Instead disputes around delivery of medically futile treatment are generally referred to a third party or ethics committee. [6] Unsurprisingly, this definition has also come under scrutiny for its inherent bias, as these committees are traditionally largely comprised of medical practitioners. [6]

Futility vs. rationing

Of increasing importance in the futility debate is the distinction between the terms futility and rationing. Futility questions whether a proposed treatment will work, whereas rationing questions the cost-versus-benefit of an intervention. [4] In the current health context of advancing treatment modalities and finite funding, attention is shifting away from defining futility and towards specifying a reasonable and appropriate level of care. [9]

The language of futility is also changing to reflect this shift in values towards a rationing emphasis. The Australian Medical Association supports the need to evaluate costs and benefits, stating: “Treatment is futile when it is no longer providing a benefit to a patient, or the burdens of providing the treatment outweigh the benefits.” [14] Wilkinson et al. argue propose that “medically inappropriate” is a preferable term to futility as it makes clear the fact that it is a value judgement made by doctors and avoids the “pseudo-objectivity” conveyed by the word “futile”. [6] This explanation, coupled with the procedural approach’s emphasis on communication and negotiation to resolve disputes, arguably offers the most useful account of medical futility in the current health context.

A suggested approach to futility for clinicians

In the absence of a medical consensus on the definition of futility, McCabe and Storm suggest contemplating the following questions when deciding if a treatment is futile:

1. The goal of the treatment in question
2. The likelihood of achieving treatment goal(s)
3. The risks, costs and benefits to the patient of pursing the intervention, compared with the alternatives
4. The individual needs of the patient [15]

When doctors and patients disagree about treatment futility, the American Medical Association promotes the following seven steps to resolve the conflict:

1. Earnest attempts should be made in advance to deliberate over and negotiate prior understandings between patient, proxy, and physician on what constitutes futile care for the patient, and what falls within acceptable limits for the physician, family, and possibly also the institution.
2. Joint decision-making should occur between patient or proxy and physician to the maximum extent possible.
3. Attempts should be made to negotiate disagreements if they arise, and to reach resolution within all parties’ acceptable limits, with the assistance of consultants as appropriate.
4. Involvement of an institutional committee such as the ethics committee should be requested if disagreements are irresolvable.
5. If the institutional review supports the patient’s position and the physician remains unpersuaded, transfer of care to another physician within the institution may be arranged.
6. If the process supports the physician’s position and the patient/proxy remains unpersuaded, transfer to another institution may be sought and, if done, should be supported by the transferring and receiving institution.
7. If transfer is not possible, the intervention need not be offered.  [16]

Conclusion

Ultimately the definition of futility has little relevance in the current healthcare climate. With continued advances in the ability of expensive medical interventions to keep people alive, a distinction must be drawn between what can be done and what should be done. Whether it is philosophically agreeable or not, futility and rationing are inextricably linked in a practical medical sense. In the current health context, the pertinent issue is now how best to manage requests by the public for medically inappropriate treatment. Successful strategies are those that minimise conflict, promote dialogue, and shared goal setting while supporting patients and their families when the limits of care have been reached.

Acknowledgements

None.

Conflict of interest

None declared.

Correspondence

K Haworth: kobihaworth@gmail.com

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