General medicine

Simon M Willcock Director, Academic General Practice Unit, Hornsby Hospital, Palmerston Rd, Hornsby, NSW 2077. simonwATmed.usyd.edu.au In reply: Bruce and colleagues are correct to call for ongoing workplace reform and support for the medical profession in general. Our study, which followed medical students to the end of their intern year, did not show a significant fall in psychiatric morbidity towards the end of the intern year as theirs did. Our review of the recent literature suggests that any “improvement” in psychological morbidity after the mid-year peak during internship is likely to be transient, with the early postgraduate period representing a period of transition from normative population values of burnout and morbidity to levels which remain high throughout a medical career, when compared with the general population. The traditional interpretation of the internship as a “baptism by fire”, which tests and ultimately strengthens the new medical graduate, does not hold up to scrutiny. A realistic assessment of this period suggests that it is one where stress and distress often reach unhealthy levels, and where dysfunctional coping strategies may be developed which persist throughout a medical career. The development of mature personal coping strategies along with systemic changes to promote engagement with work have been identified as the most likely means of limiting burnout and its sequelae among medical practitioners.1

Simon M Willcock

Allergy. Your questions answered. Helen E Smith, Anthony J Frew. Edinburgh: Churchill Livingstone, 2003 (220 pp). ISBN 0 4430 7291 4. This is a compact paperback that will be of interest to primary care physicians, nurses and patients. Despite its size, it covers a broad range of allergic disorders and related topics. The authors are suitably qualified to present a resource such as this. Helen Smith is a reader in primary care medicine at the University of Southampton, and Anthony Frew is an eminent professor of allergy and respiratory medicine in the same institution. The question-and-answer format used throughout the book ensures that it provides a succinct, authoritative opinion on all aspects of allergic disease. Its layout ensures ready access to any topic, with an excellent list of chapter and topic headings as well as an easy-to-use index. There is a list of questions, which are numbered for easy reference. Within each chapter there are highlighted points, clear diagrams and a list of frequently asked patient questions at the end of each section. The material covered in this volume is relevant and up-to-date, and the authors clearly differentiate between factual material and proven therapies, on the one hand, and unproven techniques and therapies on the other. The chapter dealing with unproven diagnostic techniques and therapies is particularly well presented. The authors present a straightforward, honest appraisal of the deficiencies of many of the so-called alternative techniques used by non-medical practitioners in the pursuit of the patient with allergic disease. As with most books written in the Northern Hemisphere, sections on seasonal allergy are of limited use to an Australian audience because of the differences in our pollen seasons. The appendix of useful organisations with website addresses is also of limited use because of the predominantly local nature of this information, although two Australian organisations do rate a mention. There are a number of other international organisations listed in this section. At first glance the suggested retail price of almost $66 appears to be expensive for such a small paperback edition. In fact, this is a beautifully presented and easily accessible textbook on allergic disease, and it will have appeal both as an interesting read and as a reference book for those who desire a working knowledge of the subject. Constance H KatelarisAssociate Professor Department of Clinical Immunology and Allergy Westmead Hospital, NSW Order this book

Constance H Katelaris

The most important need is for a change of attitude and approach Transition is “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated health care systems”.1 The importance of transition of young people with chronic health conditions from paediatric to adult care is finally being recognised, but it needs to be addressed in a coordinated and integrated way. In Australia, as internationally, there are some well established and potentially effective transition programs. However, little is known about the efficacy of such programs, as there is little published evaluation.2 What is clear, both anecdotally and with some modest support in the literature, is that the journey faced by young people with chronic and disabling conditions is a complex one.3,4 The majority will face obstacles that arise from the lack of infrastructure and precedent in this specialised area of health care. Current approaches are rarely ideal, the most likely options being abrupt transfer to adult services, staying in the paediatric setting longer than is appropriate, or leaving medical supervision altogether. 5 The study at the Royal Children’s Hospital, Melbourne, reported by Lam and colleagues6 in this issue of the Journal (page 381) revealed a doubling in admissions of young adults aged 18 and over between 1992 and 2001, along with an overall increase in the numbers of adolescents admitted. In a more detailed analysis of a cohort of 247 young adults admitted during 2001, the authors also examined disease complexity and discovered a paucity of transition planning, particularly in surgical units. While some medical services (eg, Endocrinology, Respiratory Medicine) appeared to effect transition of adolescents with complex health issues efficiently, this was definitely not the norm. With increasing prevalence of some diseases and improved survival rates for previously fatal childhood conditions, pressures on all tertiary care facilities continue to rise. In paediatric hospitals, one possible outcome is pressure to improve facilities for adolescents. A psychosocial survey of Australian hospitals undertaken in 2004 by the Association for the Welfare of Child Health showed an increase in the number of “adolescent units” since the previous survey in 1994. 7 Hospitalised and ambulatory young people require developmentally appropriate health care supported by psychosocial services — needs that are usually better served in dedicated adolescent facilities. While the impact of this trend on transition practices is yet to be determined, the broader challenge is to consider transition needs in the coordinated planning of health care services. Until transition to adult care is recognised by the adult health care system as requiring a demonstrable change in attitude and resources, little real progress will be possible. Older adolescents deserve to be treated more as adults than as children. Keeping young adults in the paediatric system is working against this goal on many levels. A sense of maturity and hope for the future are implied in “moving on”, 8 but one of the prerequisites for an effective transition program is “an interested and capable adult service”. By allowing young adults to stay on in the paediatric system (which carries its own set of problems, including the inappropriate collocation of young children with “adults”), the development of such services is effectively stifled, and adult physicians and surgeons are not encouraged to develop their skills in the area. The article by Lam et al asks, “Why are they there?” It has been proposed that paediatric services may hold onto patients because of mistrust of adult services9 or through failure to promote independence and autonomy in health-care seeking. 10 Some other probable reasons are less strongly supported by the literature. One is that paediatric services are family-focused, while adult services treat patients as independent adults. This is problematic for young adults who still require family involvement because of the nature or severity of their disease or disability. Doctors and other staff in adult services may have limited knowledge and understanding of childhood chronic illnesses in young people who survive into adulthood, or of developmental issues in adolescents. Furthermore, young people are “diluted” in the adult health care system and their special needs may be largely overlooked in individual services. There are inherent difficulties in discovering, accessing and negotiating adult services for young people and their carers. The implications of “failed transition” for young people range from a lack of continuity of care and reliance on crisis services to “falling through the gap”, with significant adverse health consequences. 11 We agree with Lam and colleagues that the solution to the problems of young adults in children’s hospitals lies more in a greater focus on the infrastructure supporting transition than in admission policies per se. Unfortunately, there are no established, evaluated transition programs described in the literature on which such an infrastructure could be based. In New South Wales, the Transitional Care for Young People with Chronic Childhood Illnesses Group (part of the Greater Metropolitan Clinical Taskforce) is developing a state-wide strategy to address transition, which may serve as a blueprint for a national process (Box). Data collection, “gap” identification and the use of transition coordinators based in adult hospitals are all part of this initiative. Australia urgently needs to develop a national policy on transitional care that articulates the critical role of transition coordinators as well as the coordination of transitional care between paediatric and adult services. Success will also depend on educating health professionals and families about the value of coordinated transition; developing appropriate attitudes and expertise, particularly in adult services; comprehensively evaluating transition programs; examining health outcomes and cost–benefit issues; and involving consumer advisory groups.12,13 While additional resources may be needed, the overwhelming need is for a change of attitude and approach. Transition plan for young people and their families/carers*† * Based on a strategy being developed by the Transitional Care for Young People with Chronic Childhood Illnesses Group of the Greater Metropolitan Clinical Taskforce. †This model will require adjustment to meet the needs of special groups.

David L Bennett FRACP, FSAM · Susan J Towns FRACP · Kate S Steinbeck FRACP

Next to nothing is known about physical findings’ impact on patient care Young physicians today seem confused about physical examination. In the United States, many of them do not know how to do it and do not see why they should. Asymptomatic patients do not seem to need it; the US Preventive Services Task Force found insufficient evidence to recommend periodic physical examination of the breast, prostate, heart or anything else. Sick patients do not seem to benefit much from it either, most of them tested to death regardless of their physical findings. It is hard to say which is the chicken or the egg here, but physical diagnosis instruction in many US medical schools now is either out of date (emeritus faculty members teaching useless arcana like percussion of Traube’s space), out of touch (junior faculty members making rounds in a conference room, not at the bedside), or both. Young physicians trained outside the US are bewildered about this, too. Many of them, meticulously trained in physical examination, are appalled upon first encountering the “hands off” culture of US medicine. But they learn quickly, in the process often unlearning much of what they had learned before. The pace and clinical impact of this remarkable phenomenon is unknown because no one has studied it, a bewildering thing in itself. Many medical professionals claim to be bothered by this trend, but you would not know it from reading the medical literature. Although laudable research has clarified the accuracy (likelihood ratios) and reliability (kappa statistics) of particular physical findings,1 next to nothing is known about physical findings’ impact on patient care.2 In fact, you can count on one hand the number of studies ever published about this issue, not one of them large, controlled or externally funded.2-6 This inattention by researchers to medicine’s core clinical skills seems especially striking in this era of evidence-based medicine, in sharp contrast to the glut of acronymic mega-trials funded by “Big Pharma” to achieve statistically significant (but often clinically trivial) results. Some say not to worry about the lack of published evidence, the clinical value of physical examination is self-evident. To these true believers, we recommend a brief visit to any US teaching hospital today. The National Board of Medical Examiners, not so sanguine, plans to test the bedside skill of US medical students as a new requirement for graduation. This is a wise plan — in part because it has worked well in other countries — but not worth the bother if it ends there. What more can we do? In addition to evaluating how well our physicians learn the basics,7 we must continuously question what we teach them and why. For example, which physical findings have clinical utility in which clinical contexts? Palpating the carotid artery is essential in a patient with angina and a systolic murmur,1 less important in a patient with neck pain. Which physical findings, when shared with radiologists or pathologists, improve interpretation of diagnostic images or biopsies? Contrary to popular belief, the sensitivity and specificity of technological diagnostic tests may not be independent of patients’ clinical findings, knowledge of which may improve test performance.8 Conversely, which aspects of physical examination are useless (inaccurate, unreliable, redundant) or cost-inefficient when compared with technological testing? Thus, the real dilemma today is uncertainty about the “value added” by particular aspects of physical examination to the quality of patient care. If more attention were paid to this issue, more effort could be devoted to maintaining and improving particular bedside skills throughout physicians’ professional careers. Instead, the strongest praise many observers can offer is their feeling that the “laying on of hands” improves communication and trust between doctors and patients, somehow “connecting” them better, not just physically but otherwise. Despite its New Age vibrations, this feeling rings true to us, at least in the sense that careful physical examination focuses the physician, intently and singularly, on this patient now. (As one expert examiner put it, “The stethoscope allows you to connect not only your ears, but also your mind, to the patient.”9) This phenomenon is notable, and deserves further study, but it is not enough to convince the bewildered or sceptical among us about the value of physical examination. Proving scientifically physical examination’s clinical utility is difficult because this requires strict control of potential confounders. But to “isolate” the contribution of physical examination to diagnosis or prognosis — controlling methodologically and analytically for the patient’s history, test results and other confounders — makes little sense clinically. Physical findings add value precisely because they interact with and complement these other sources of information.3-6 For this reason, clinical epidemiologists commonly describe physical findings as “tests” whose result, when combined with a pre-test probability (based on prevalence, the clinical history or both), generates a post-test probability.1 This Bayesian approach makes it easier to describe the accuracy of physical findings, but there is scant evidence that physicians use this kind of reasoning when making clinical decisions. More promising, in our view, are clinical decision rules which, based on multivariate analysis of all potential clinical predictors (including physical findings), quantify the predictive power of the few key determinants of the outcome of interest.10 When impact analysis of such decision rules demonstrates that particular physical findings help to improve patient outcomes (for example, in the management of suspected pulmonary embolism or acute cardiac ischaemia),11,12 sceptics best take heed: these are things we all need to know. Much more research is needed in this area. In the end, we find ourselves bewildered by the need to say these things, bothered by the medical profession’s reticence about them. Together with the history, physical examination is the doctor’s best kept secret — powerful, portable, fast, cheap, durable, reproducible and fun — but it must be allowed out of the closet. We admit we are biased about this, perhaps even bewitched. How could we not be? Like other experienced clinicians, we cannot forget those memorable moments when a careful physical examination yielded magical results: neck veins that resurrected a young mother, moribund from pericardial constriction; a tender temple that rejuvenated an octogenarian, wasted by months of fever; a Babinski reflex that saved an Olympian, his brain tumor too early to see. And more, many more. Such anecdotes prove nothing, of course, but they are . . . bewitching. Modern medicine — bewitched by technology, bothered by its cost, bewildered by those who need it but cannot afford it — would do well to step back, re-examine itself. We recommend a thorough check-up. Preferably by a doctor who takes the time to look, listen, even touch. This should not be difficult to arrange. There are many such doctors out there. Good ones. For now, anyway.

Brendan M Reilly MD · Christopher A Smith MD · Brian P Lucas MD

Objective: To assess the degree to which men considered it appropriate for general practitioners to order prostate-specific antigen (PSA) testing if the testing was either “disclosed” or “undisclosed” to the patient.Design: Telephone-administered survey conducted in June to October 2000.Participants: 514 men aged 50–70 years, identified by random selection of households from the Sydney Electronic White Pages phone directory.Methods: We developed two hypothetical scenarios. Each scenario described a GP ordering a PSA test for a male patient at the same time as other pathology tests were ordered. In Scenario 1, the GP’s intention to order a PSA test was disclosed to the patient (“disclosed”). In Scenario 2, the GP did not tell the patient a PSA test was being ordered (“undisclosed”). For each scenario, men reported the degree to which they perceived screening to be “appropriate”. We also recorded demographic characteristics, health status and health locus of control, and administered a 14-question knowledge test about prostate cancer and PSA screening.Results: Over 90% of men stated that “disclosed” PSA screening was either “appropriate” or “very appropriate”. Significantly fewer (44.9%) rated “undisclosed” screening as appropriate/very appropriate (P < 0.001). While the skewed distribution of responses to Scenario 1 precluded multivariate analysis to determine predictors, men rejecting “undisclosed” PSA screening (Scenario 2) were more likely to be younger (adjusted odds ratio [AOR], 0.97; 95% CI, 0.94–1.00; P = 0.03); to have better knowledge of the issues (AOR, 1.01; 95% CI, 1.00–1.03; P = 0.02); and to be single (AOR, 0.62; 95% CI, 0.41–0.94; P = 0.02).Conclusions: Many men consider that inclusion of PSA screening within a battery of pathology tests without disclosure to the patient is unacceptable. Educating men about the pros and cons of screening may alter their support of opportunistic screening and thus enhance community expectations of “informed participation”.

Melina Gattellari BSc(Hons), PhD · Jeanette E Ward MB BS, PhD, FAFPHM

Kevin L Forbes Head, Years 3 & 4 MB BS Program, School of Medicine, University of Queensland, Mayne Medical School, Herston, QLD 4006. k.forbesATuq.edu.au To the Editor: The personal perspective on continuous improvement outlined by Kilham succinctly documents the concerns surrounding the application of management tools to the practice of medicine.1 As Kilham says, continuous improvement has been around for a long time and “flowed from a particular attitude . . . [that of] a mind open enough to recognise better ways of doing things, or ways of doing better things”.1 However, I would argue that even history-taking does need to continually improve to include various communication skills appropriate to individual patients. Continuous improvement in history-taking skills, to enable each patient to express their major concerns and to feel more in control of the consultation, has significantly reduced my feelings of frustration provoked by previous patients. Adherence to the strict script of history-taking taught to me in my undergraduate training seemed to provoke a rejection of the expert advice I was giving them. Management does need to understand the importance of recognising good work already done and the current high achievements of medical practitioners. On the other hand, even the busiest of clinicians should understand the professional advantage of participation in a project to further improve or develop new ways of solving their patients’ problems. There are multiple strategies needed for the effective “change from the existing entrenched structure and culture of patient care to one based on patient- centred, evidence-based care”.2 However, management certainly needs to support the busy clinicians during the project. It is also better to avoid jargon and the constant renaming of programs. I would argue that the learning principle underlying the range of continuous improvement programs is the same. That principle is to question, accept challenges, explain, justify and seek further information as a continuous process.3 One essential feature of continuous improvement (whatever it is called) is that the practitioner needs to participate in the selection of the project for continuous improvement and the objective outcome measures that will prove the change to be advantageous or not advantageous. It is also important to recognise that successful continuous improvement programs in one context do not necessarily translate to another context. I agree that management must accept the same standards and accountability demanded of clinicians. In addition, all clinicians should participate in continuous improvement projects as well as being assured that we currently practise medicine at a high standard.

Kevin L Forbes

Bill Coote Medical Practitioner, 20 Ryrie St, Campbell, ACT 2612. billcooteATnetspeed.com.au To the Editor: Gordon, Director of the Centre for Medical Humanities at the University of Sydney, suggests that “the separation of clinical care from the ‘human sciences’ is a professional and social mistake”, and that “the arts, humanities and social sciences act as a counterbalance to the relentless reductionism of the biomedical sciences”. 1 Her university now offers a Masters in Medical Humanities and the opportunity to study subjects such as Medicine and war and Medicine and music. Gordon suggests that study of the medical humanities could result in “a more insightful view of the patient, the doctor and the health care system, and an enhanced capacity to cure, relieve and comfort”, and that “history, philosophy and sociology warn that the person with the disease is all too easily reduced to the non-hygienic, non-rational, disordered ‘other’ ”, while “the growth of medicine as an economic and rational profession has paradoxically contributed to the social diminution of the body, the very object of its focus”. 1 This warrants a response more elegant than the earthy Australian expletives that come to mind. That master of teasing irony, Jane Austen, makes gentle fun in Emma of educational establishments “which professed, in long sentences of refined nonsense, to combine liberal acquirements with elegant morality upon new principles and new systems”.2 In an article entitled Medicine and literature, UK medical historian Neve argues “there are numerous difficulties tracing the connections between two vast areas of human effort that may not be easily twinned” and that “the desire to twin them may be an ambition more attractive to medical practitioners than to writers and artists”.3 Doctors may yearn to counter a modern perception that they are mere technicians, some by seeking to reclaim a lost identity as the last of the humanists. Neve provocatively suggests that for many modern practitioners, often “their cases are routine, unglamorous, and socially explicable in matter-of-fact terms”.3 Maybe the best approach to the humanities for anyone, including doctors, lies somewhere between the sermonising of Gordon and the temptations of escapist fantasy, such as those offered by the master of ceremonies in the movie Cabaret with his excuse that “life is disappointing, forget it”.4

Bill Coote

Jill Gordon Director, Centre for Medical Humanities, University of Sydney, NSW 2006. jill.gordonATarts.usyd.edu.au In reply: It may be possible to identify an approach that lies “somewhere between the sermonising of Gordon”, as Coote puts it, and the world-weariness of the master of ceremonies at the Kit Kat Club. Research in the social sciences suggests that we derive more personal happiness from positive experiences, including our social and intellectual pursuits, than from material possessions. These findings are probably due to the fact that positive experiences generate pleasant memories and a richer sense of personal identity. Positive experiences also have greater social value than possessions, being more easily shared with others. Thinking and talking about new ideas provides a great deal of pleasure and satisfaction for students in the medical humanities. While mere “cases” may be, as Coote quotes, “routine, unglamorous, and socially explicable in matter-of-fact terms”, the doctor–patient relationship is not. Medicine provides a resource which can be used, as philosopher Martyn Evans has pointed out, to reflect on ourselves, express ourselves, develop ourselves, criticise ourselves and encounter ourselves.1 To do these things, we need tools constructed by the arts and humanities, as well as the sciences. Coote’s choice of reading material — the Companion encyclopedia of the history of medicine2 — is a great place to begin.

Jill Gordon

Objective: To evaluate the effect on depressive symptoms in cardiac patients of patient-specific advice to general practitioners regarding management of comorbid depression.Design and setting: A randomised controlled trial in four general hospitals in Adelaide, South Australia.Participants: Patients (n = 669) admitted to cardiology units for a range of cardiovascular conditions who were screened and assessed as being depressed according to the Center for Epidemiological Studies Depression Scale (CES-D).Intervention: Inpatient psychiatric review, followed by telephone case conferencing between specialist hospital staff and GPs to provide patient-specific information about the patient’s depression and its management, educational material, and ongoing clinical support.Main outcome measures: Level of depression severity at 12 months post-hospitalisation.Results: On the basis of intention to treat, intervention patients had lower rates of moderate to severe depression (CES-D ≥ 27) after 12 months (25% v 35%, relative risk, 0.72; 95% CI, 0.54–0.96, number needed to treat for benefit, 11). The intervention was most effective in preventing progression from mild depression to moderate to severe depression. The multidisciplinary telephone case conferencing was difficult to implement and, in a post hoc analysis, brief phone advice from a psychiatrist was found to be effective.Conclusions: Screening hospitalised cardiac patients for depression and providing targeted advice to their GPs reduces depression severity 12 months after hospitalisation.

Geoff Schrader PhD, FRANZCP · Frida Cheok PhD · Ann-Louise Hordacre PhD · Julie Marker GDPH · Victoria Wade FRANCGP, MPsych

Matthew J Bragg,* Paul Middleton* * Emergency Physician, Prince of Wales Hospital, Barker St, Randwick, NSW 2031. braggmATsesahs.nsw.gov.au To the Editor: We read with interest the case reported by Williamson and colleagues of an adult survivor of near-drowning complicated by cardiorespiratory arrest. 1 This is a remarkable account of survival with near-intact neurological recovery from what was a very bleak initial clinical scenario, and the pre-hospital and hospital personnel responsible for his resuscitation should be congratulated for their efforts. However, the authors’ use of therapeutic hypothermia in this case does not necessarily support their contention that “controlled hypothermia . . . should be used in near-drowned patients who have spontaneous circulation but remain comatose”. As presented, the case illustrates the benefit of supportive care in general, and the use of appropriate controlled ventilation in particular. As the authors noted, “gentle hyperventilation to ‘blow off’ excess CO2” corrected the hypercapnia and acidosis. The graphs of arterial pH, lactate level and Pco2 presented in the report show a linear improvement in all three indices after controlled ventilation, before hypothermia measures were begun. Indeed, the commencement of hypothermia had no discernible impact on these trends. While there is some evidence in the literature for the use of controlled hypothermia after cardiac arrest,2 there is no direct evidence of its benefit for victims of near-drowning. We do not feel that controlled hypothermia can currently be recommended as standard of care for near-drowning on the basis of this single case report.

Matthew J Bragg · Paul Middleton

Jonathan P Williamson,* Stan Braude† * Intensive Care and Respiratory Registrar, † Intensivist, Department of Respiratory and Critical Care, Manly District Hospital, Darcy Road, Manly, NSW 2095. JonowilliamsonATozemail.com.au In reply: We agree that our patient’s survival from the near-drowning incident was primarily attributable to the initial and subsequent supportive care. Clearly, the contribution of hypothermia to his survival cannot be quantified from one case. However, previous studies have shown that the use of controlled hypothermia in comatose survivors of out-of-hospital cardiac arrest improved survival with good outcome. 1,2 These studies did not focus on drowning victims — a study in this group would be extremely difficult — but had neurological recovery in patients with anoxic brain injury as principal outcome. In this sense, it can be argued that the aetiology of the brain anoxia is not in itself important. The Amsterdam World Congress on Drowning in 2002 recommended the use of controlled hypothermia in the comatose near-drowned patient. 3 This is a relatively simple procedure (albeit labour intensive) and is becoming the standard of care in many hospitals for out-of-hospital cardiac arrest. In these hospitals, its routine use in the near-drowned patient would not be difficult. Given the evidence so far accumulated in its favour, and the lack of adverse effects if undertaken correctly, it seems justified to seriously consider its use in the near-drowned patient. We therefore argue that the ventilation and supportive care of our patient aided his physiological recovery, while the neurological recovery was at least partly due to the hypothermia.

Jonathan P Williamson · Stan Braude

Donald B Reid Co-convenor, Colleague of First Contact PO Box 896, Bridgetown, WA 6255 dbreidAThotlinks.net.au To the Editor: Thank you for your in-depth look at some of the concerns in doctors’ health in the October 2004 issue of the MJA. 1 I believe it would have been useful to include in the issue some practical information for doctors wanting to seek help, either for themselves or for a colleague. The attached table of contact phone numbers does not cover every state and territory, but it is a starting point. The services offered are confidential, and can be anonymous if desired. In Western Australia, the contact can include access to a list of doctors willing and able to be GPs for their colleagues. Further information is available on the Doctors’ Health Advisory Service website <www.doctorshealth.org.au>. Editor’s note: The AMA website also has a very useful “Doctors’ Health Database” at <www.ama.com.au/web.nsf/tag/doctors-health-database>. Australasian Association of Doctors’ Health Advisory Services (DHASs): helplines for doctors Victorian Doctors’ Health Programme (VIC) (03) 9495 6011 DHAS (SA) (08) 8273 4111 Colleague of First Contact (WA) (08) 9321 3098 DHAS (NSW) (02) 9437 6552 DHAS (New Zealand) (04) 471 2654 DHAS (QLD) (07) 3833 4352 DHAS (TAS) (03) 6223 2047 (in hours) (03) 6235 4165 (after hours)

Donald B Reid

The UK needs to revitalise metropolitan medicine as Australia has done for rural medicine With over half of the world’s population living in cities and towns, one of the great challenges of the 21st century is to define and deliver effective and affordable health and social care to urban populations. In the United Kingdom, this is nowhere more apparent than in the deprived parts of its great metropolitan areas. Here, the ratio of general practitioners to population numbers is significantly lower than the national average, there are more solo-doctor practices, and these practices frequently lack the critical mass required to support a full range of services. Overall, inner-city general practice has been a running sore for the National Health Service. To make matters worse, many of the principals of these practices are within cooee of retiring. . . country practitioners in Australia . . . are rediscovering the independence and ingenuity that the nation holds as central to its self-image The looming crisis in metropolitan medical manpower has thrown into focus a general difficulty in attracting health professionals of all kinds to work specifically in primary care, but also in other parts of the NHS serving the big cities. As ever, London is the most extreme case, but it is not unique. The combination of low wages, expensive accommodation, and difficulties in out-of-hours travel (underground trains stop soon after midnight and buses are then infrequent) leaves one far short of Dr Finlay’s idyllic country practice, as depicted in A J Cronin’s books and the TV series. If you are a general practitioner in Harris, in the Outer Hebrides, your nearest specialist in a particular discipline might be in Aberdeen, on the other side of Scotland, but your life and work will have other personal and professional compensations, starting with a beautiful environment, neighbours you know and a stable population of patients. In 2001, the UK government launched a program of “teaching” primary care trusts (PCTs), eventually conferring this status on one trust in each of the 25 strategic health authority areas in England and Wales and making equivalent arrangements in Scotland. Curiously, the background documents for this initiative stressed not education but recruitment and retention of health professionals to work in primary care. Although this seemed a non sequitur, eventually the penny dropped — metropolitan medicine in the UK is, in effect, rural health in Australia turned upside-down. Many of the difficulties faced by practitioners in the two settings are virtually identical: long working hours, often in solo practice; lack of suitable pre-placement training; limited locum cover for holidays and professional development activities; and major concerns about housing, education for children, jobs for partners, and transport. What is not the same is the systematic effort and investment to make a virtue out of necessity. Going beyond early experiments in protected quotas for students from country areas, many Australian medical schools have created departments of rural health, and there are vibrant undergraduate student societies supporting this interest. There are now dedicated postgraduate training schemes for both GPs and specialists seeking a career in the bush, and the profile of the Australian Journal of Rural Health is growing steadily. While medical schools worry that a mismatch between political enthusiasm and dollars invested has increased competition for limited resources, and outer metropolitan areas struggle to attract doctors, country practitioners in Australia from all health disciplines have a growing sense of pride in themselves and their work and are rediscovering the independence and ingenuity that the nation holds as central to its self-image. The UK badly needs to revitalise metropolitan medicine in the same way, but, apart from some dedicated appointments of GPs made under a new system of contracts, this is not happening. The “teaching” budgets of the teaching PCTs are tiny and time-limited, and the university-affiliated hospitals of the biggest cities have one eye on solving the problems referred by their local district general hospitals and the other on research. Any sense of serving a “patch” is much more about defining the geographical boundaries of legitimate referrals than mutual “imprinting” between institution and community. Providing primary care services to their local, inner-urban populations via accident and emergency departments is an inherited responsibility descended directly from giving alms to the poor — a form of noblesse oblige. The features of urban populations that make metropolitan practice exciting — their youth, mixture and mobility — are seen as a source of complication, not stimulation. Nor are the medical schools showing heightened interest. Outside academic departments of primary care, which have been leaders in research on ethnicity, poverty and health, UK medical schools have mostly been lukewarm in their response to requests from government to improve the breadth of access to medical training to include more mature students, entrants from poorer socioeconomic groups, and members of black and other ethnic minorities. The last, in particular, are far more prominent in the large UK cities. In a manner akin to Australian initiatives to attract and graduate rural and Indigenous students, some medical schools have actively recruited from the nominated target groups to new, in-house “foundation programs” to help bridge any gaps between secondary and tertiary education.1 Other schools have “out-sourced” such activities to less prestigious universities eager to boost their more modest reputations as higher-education institutions. While that might be a win–win solution for both parties — as well as for the students — it does highlight a stark difference in degree of connection with pressing issues in the wider community and health service. Australia might have been short-sighted in cutting numbers entering medical training in the early 1990s, but, in trying to limit the contraction, several medical schools responded by earmarking places for students of rural or Indigenous origin. The lead-time is very long, and we can not yet be sure about the careers these pioneers will follow, but the seeds were sown and the trees are growing. Britain, by contrast, has been agonising about metropolitan medicine since at least the late 1970s,2,3 but has taken a decade longer even to begin preparing the soil. Conceivably, recent by-election victories by the Liberal Democrats in economically poor, immigrant-rich urban constituencies might lead the other two major political parties to realise that “things need not be forever thus” and prompt some real reform.

Konrad Jamrozik DPhil, FAFPHM, MFPH · David P Weller MPH, PhD, FRACGP, FAFPHM · Richard F Heller MD, FRCP, FRACP, FAFPHM

Bill Young was born in Adelaide on 9 February 1917. After his secondary education at Carey Baptist Grammar School in Melbourne, he worked for the Commonwealth Bank. In 1936, his aunt, Dr Helen Young, herself a Harley Street specialist, wrote offering to support him to study medicine at St Mary’s Hospital, London. Within 3 days, he had paid £30 for his passage and was en route to London. He graduated in medicine from the University of London in 1943. After service in the Royal Navy during World War II, Bill gained a Diploma of Public Health from the University of Manchester in 1947. He returned to Australia in the same year with his wife, Dr Mary Young, and their family. They settled in Hobart, where he and Mary were in general practice together from 1948 to 1987. In addition to full-time general practice, Bill was Medical Officer of Health for both the City of Hobart and the City of Clarence, and was a member of the Medical Council of Tasmania for 34 years, the last three as President. He played a key role in establishing the Medical Benefits Fund, serving on its Council from 1952 to 1987. Bill was a Liberal member of the Tasmanian House of Assembly from 1959 to 1969, including a period as shadow Health Minister. For many years Bill was in the Royal Australian Naval Reserve, retiring in 1972 with the rank of Surgeon Commander. He served in the Korean War and was District Naval Medical Officer in Hobart from 1951 to 1972. Bill was a very good sportsman and excelled in his youth at swimming, water polo and rugby, winning swimming medals at the World University Games and playing rugby for the UK international invitational team, the Barbarians. In Hobart, he contributed his time and skills to a number of community and sporting organisations. Bill was respected by his patients and colleagues as a skilled, compassionate, practical and down-to-earth doctor. He was very gregarious and a wonderful host and derived great pleasure from his large family. A man of great energy and initiative, with exceptional organisational skills, he made a substantial contribution to his profession and to the community. In 1987, he was made a Member of the Order of the British Empire in recognition of his service to the community and to public health. The last years of Bill’s life were devoted to caring for his wife in her final illness. He died in Hobart on 19 November 2003 after a short illness. He is survived by his seven daughters and their families. Judith A Y Straton

Judith A Y Straton

Norman Shum Psychologist and Physician, Psychological Medicine, Eastwood, SA. menciusATsenet.com.au To the Editor: Patient arrogance definitely does exist and can complicate the process, described by Ellard, of “diagnosis, prognosis and therapeutics”.1 I believe this state of affairs has arisen for two reasons. Firstly, from the evolution of “informed consent” linked to “patients’ rights” — principles that need no elucidation. Secondly, as a consequence of the explosion of media and technology. Television has given us a surge of medical programs, especially of the so-called “reality” type, and technology has made information easily available on the Internet. Unfortunately, patients become Internet surfers and surfers become patients. When they then present with symptoms, it is often armed with some knowledge — albeit of dubious quality and veracity. If the doctor does not provide a very accepting ear to these proffered “medical data”, the patient often stops listening, becomes intransigent, and tends to prefer the media- or technology-generated opinion, including the suggested treatment for the semi-self-diagnosed disorder or illness. I am reminded of one of Groves’ subtypes of “hateful patients”, namely “entitled demanders”. He wrote, “. . . they use intimidation, devaluation and guilt induction. . . . The patient may try to control the physician. . . . Such patients often exude a repulsive sense of innate deservedness as if they were far superior to the physician.”2 In my own practice, I had one such patient who would arrive and immediately intimidate my secretary by literally throwing his Medicare card on the desk in front of her and ordering her to turn off the radio that was tuned quietly to ABC FM. She has now retired, but, even 2 years later, says she will always remember him! It takes considerable tact and skill to deflect and reduce the hostility of an arrogant patient so that he or she can ultimately benefit from the consultation. Perhaps it is best done by keeping in mind the fundamental principle primum non nocere.

Norman Shum

Zelman Freeman Retired Physician, 1/43 New South Head Road, Vaucluse, Sydney, NSW 2030. zelfreeATbigpond.net.au To the Editor: You recently commented on the closure of public hospital common medical dining rooms in the 1960s and 1970s.1 Traditionally, these common rooms were a place where residents and senior medical staff met. The closure of these facilities had more serious consequences than the loss of “breaking bread”, as you quaintly put it. The daily meeting between residents ending their shifts and those starting work allowed discussion about the sickest patients — after the dining room closure, such discussions became much less effective. Helpful comments and advice from senior staff were no longer available. New medical advances and the strengths and weaknesses of the system were previously subjected to keen analysis, but all this medical “shop talk” was lost. More importantly, the closure of medical dining rooms contributed greatly to the loss of hospital esprit de corps, which included a sense of belonging to a worthwhile institution to which most of the medical staff were sincerely dedicated. Medical dining rooms had a century-old history in the main state hospitals. I suspect that their closure had more to do with a Jacobin ideological mindset in health departments rather than being an “efficiency” move. Medical staff were not allowed to put tables together in the new refectory, as to do so might appear elitist. I remember going into the small staff room of my hospital at that time to have afternoon tea — a service provided to both lay and medical staff — only to be told by the medical administrator that “non-recoupable foodstuffs were no longer to be served to the medical staff”. Meanwhile, the cleaners in their room next door were enjoying their hospital biscuits! This was the beginning of the “doctor-bashing” era that only the older members of the public remember, and it is not unreasonable to claim that many of the public hospital problems in patient management stem from the actions of perverse individuals who undermined the cohesive and dedicated work of the medical staff, just as they did when they abolished the distinctive hospital uniforms and badges of the nurses, who had always taken pride in their own hospital traditions. A bland coloured gown was substituted to remind them that they were “health workers”. No wonder there is difficulty in recruiting new staff and building a sense of dedication to such an amorphous service. Administrators need to be reminded that good traditions should not be abolished without mature reflection on the consequences.

Zelman Freeman

William B Molloy Gynaecologist, Suite 10, Level 7, William Bland Centre, 229-231 Macquarie Street, Sydney, NSW 2000. drmolloyATbigpond.com To the Editor: I congratulate you on your column in the 1 November 2004 issue.1 For years, I have stated that it is a problem, not only in the public hospitals, but now creeping into the private hospitals, that there is no private room available for doctors to talk among themselves. This also includes the theatres, where only one room is available for both nurses and doctors, and I think this is a giant mistake. I remember that when I was a young doctor, consultations were arranged over lunch. Doctors talked to each other and everyone knew about the important cases in the hospital. It was a teaching and learning experience. In addition, in the afternoon, after one had finished work and was relaxing over the newspaper, again there was contact between doctors. At St Margaret’s Hospital, where I was the Medical Superintendent for fourteen-and-a-half years, between 1969 and 1984, I fought until the day I left to maintain these rooms. The dining room was lost, but at least there was a room where doctors could gather after they did their morning ward rounds. There was an enormous amount of work done and many opinions proffered in that room, and to this day many doctors tell me how much they miss that experience in the hospital they now attend. Isn’t there someone who can point out that, although the public health system is a shambles at present, we should not allow the private system to go down the same track? Sadly, it appears to be doing just that.

William B Molloy

Peter F Burke Surgeon, PO Box 84, Newborough, VIC 3825. burkeATvic.australis.com.au To the Editor: Somerset Maugham noted, “At a dinner party one should eat wisely but not too well, and talk well but not too wisely”.1 Your recent column lamenting the disappearance of doctors’ dining and common rooms2 precipitated a flood of warm memories of, in my case, St Vincent’s Hospital in Melbourne in the 1960s, 1970s and early 1980s. Now based in the Latrobe Valley, Victoria, I have witnessed first-hand, over almost 20 years, much grievous political and social engineering — the abject failure of the first “privatisation” of a public hospital in Victoria and, in the custom-designed “greenfields” hospital, the near-complete lack of provision of facilities for consultant medical staff, leading to their fleeting meeting in corridors and carparks. It is unlikely that C P Snow had this in mind when he wrote of “corridors of power”.3 Contemporary medical staff are indeed an amorphous lot. The clinical white coat is but a memory, and often the only way to recognise a doctor, usually dressed in a manner that would suggest forthcoming involvement in a “Clean up Australia” gathering, is the fashionably appropriate half-noose stethoscope, which, akin to a saint’s halo, confers immediate status on the bearer. Laennec, who invented the stethoscope in 1819, had surely not foreseen the commercial potential of his epochal invention.

Peter F Burke

Bruce P Waxman Medical Program Director, Surgery Program, Southern Health, PO Box 478, Dandenong, VIC 3125. b.waxmanATsouthernhealth.org.au To the Editor: Your recent experience in a staff cafeteria1 is clearly anecdotal, as are my own. I believe, however, the balance needs to be redressed. There is little point in campaigning for “return of the doctors’ common dining room”, as, at least in the public sector, there are no funds available for this campaign. I have been very impressed with the camaraderie that exists in the staff cafeteria at Dandenong Hospital, Southern Health, because medical care is now a team approach and I have the opportunity to meet with medical students, interns, house medical officers, registrars, nurses and administrators, either over a cup of coffee provided free by the Health Service, or a meal. The staff cafeteria has been a meeting place for the team, engendering a team approach to medical care which, I believe, is appropriate to champion for the future of healthcare delivery in Australia.

Bruce P Waxman

Philip Kessly died on 18 August 2004 in Perth, Western Australia, after a long illness. His career had been one conspicuous by his dedication to his community, family, and the art and science of medicine. The eleventh of 12 children, Phil was born in London on 22 February 1922 to Jewish migrants who had fled pogroms in their native Ukraine. He was educated in London, Merseyside and Manchester. In 1937, he took an apprenticeship in pharmacy, which he completed in 1940. During the war, Phil enlisted voluntarily in the British army, where he worked on radar. His service included a period in India, from where he returned in 1946. After demobilisation, he went to Edinburgh to study medicine, his great passion in life. It was there that he met Lilian, who later became his wife. Phil migrated with his family to Australia in 1956, where he joined a practice in Mt Hawthorn, WA. He later established a very successful practice in Yokine, in suburban Perth. He continued in general practice until 1986, when ill health forced him to seek out a quieter practice in Como, where he continued to work until shortly before his death. In addition to running a very busy general practice, he involved himself in other aspects of medicine. He was a clinical assistant in dermatology at the Royal Perth Hospital (1960–1972) and a lecturer in the Department of Social Work at the University of Western Australia (1977–1979). He realised the importance of passing on his skills, and was a foundation member of the Department of General Practice at the University of Western Australia. Phil was also actively involved in many political aspects of Australian medicine. He served on the WA Branch Council of the Australian Medical Association (AMA) (1972–1982) and was President in 1975. He was elected a Fellow of the AMA in 1979. He saw the need to recognise general practice as a special discipline, and was instrumental in establishing the WA Faculty of the Royal Australian College of General Practitioners, serving as its Provost from 1976 to 1978. His regular appearance at Beatty Park Aquatic Centre in white robe, snorkel and mask will be sadly missed, as will his sharp intellect, his encyclopaedic knowledge and his commitment and compassion in medical practice. Australian medicine was fortunate to have had the contribution and enthusiasm of such a gifted and exceptional man.

Peter M Winterton BA, DRACOG, FRACGP

To the Editor: A recent editorial in the British Medical Journal reported advice from the UK Committee on Safety of Medicines that most types of selective serotonin-reuptake inhibitors (SSRIs) should not be used in the treatment of major depression in children.1 The editorial sparked interest in the Australian media, resulting in articles in large metropolitan newspapers with titles such as “Army of kids on antidepressants”.2 General practitioners were targeted as the cause of reported “over-prescribing”. Unfortunately, while the media drew data from the national BEACH program (Bettering the Evaluation and Care of Health; a continuing study of general practice activity3), the data presented were inflated: a “child” was defined as someone aged under 20 years (while the UK advice related to children under 18 years), and national figures were extrapolated from the upper confidence limit. Reliable estimates of GP prescribing of antidepressants to children in Australia are needed. We derived age-specific rates of antidepressants prescribed per encounter in Australian general practice for the period April 2001 to March 2004 from the BEACH data (Box 1). The data showed that children were prescribed antidepressants far less often than adults. Those aged under 12 years were rarely prescribed antidepressants. Most of those prescribed were tricyclics, which are more commonly used in management of enuresis than of depression. The media’s inclusion of 18–19-year-olds as “children” greatly increased the reported rate.2 The prescribing rate of antidepressants in children aged under 18 years was 0.47 per 100 encounters (5 per 1000 encounters), but was six times higher for 18–19-year-olds (2.82 per 100 encounters). Most antidepressants prescribed for 12–17-year-olds were SSRIs. Fluoxetine is the only SSRI currently approved for use in children in the UK.4 In Australia, caution is advised when prescribing any antidepressant to children, but venlafaxine and the SSRI paroxetine are specifically advised against.5 Nevertheless, venlafaxine and paroxetine were more often prescribed (accounting for 10% and 8%, respectively, of total antidepressants for children) than fluoxetine (5%). However, GPs provided concomitant counselling at almost 20% of contacts with children aged under 12 years where an antidepressant was prescribed, and at 40% with 12–18-year-olds (Box 2). GPs were also more likely to refer the children to a specialist than when prescribing antidepressants for adults. We do not know how many of these children have been referred to a specialist at a previous encounter, nor how often antidepressant medication is initiated by a specialist. However, it will be interesting to see whether the new advice reduces the current level of prescribing of antidepressants (SSRIs in particular) in children. 1 Antidepressant prescribing in Australian general practice, April 2001 to March 2004 Age-specific rate per 100 encounters (95% CI) Variable (ATC group)† <12 years (n = 31 869) 12–17 years (n = 11 576) 18–19 years (n = 5823) ≥ 20 years (n = 247 231) All antidepressants 0.11 (0.07–0.14) 1.48 (1.18–1.77) 2.82 (2.35–3.28) 4.18 (4.05–4.31) SSRIs (N06AB) 0.03 (0.01–0.05) 1.08 (0.82–1.34) 1.84 (1.49–2.19) 2.38 (2.29–2.46) Fluoxetine (N06AB03) 0.003 (–)* 0.08 (0.00–0.13) 0.07 (0.00–0.14) 0.28 (0.25–0.30) Paroxetine (N06AB05) 0.003 (–)* 0.13 (0.06–0.20) 0.22 (0.10–0.34) 0.48 (0.45–0.52) Other SSRIs 0.02 (0.01–0.04) 0.87 (0.63–1.12) 1.55 (1.22–1.87) 1.62 (1.55–1.69) Tricyclics (N06AA) 0.07 (0.04–0.10) 0.14 (0.07–0.21) 0.22 (0.09–0.35) 0.92 (0.87–0.97) Other antidepressants 0.006 (–)* 0.26 (0.16–0.36) 0.76 (0.49–1.02) 0.89 (0.83–0.94) Venlafaxine (N06AX16) 0 0.17 (0.09–0.25) 0.52 (0.29–0.74) 0.47 (0.43–0.51) * Insufficient observations for calculating 95% confidence intervals. † Drug group according to the World Health Organization Anatomic Therapeutic Chemical (ATC) classification. SSRIs = selective serotonin reuptake inhibitors. 2 Concomitant management provided at encounters where an antidepressant was prescribed in Australian general practice, April 2001 to March 2004 Concomitant management (% of encounters where at least one antidepressant was prescribed [95% CI]) Management <12 years (n = 34) 12–17 years (n = 171) 18–19 years (n = 164) ≥ 20 years (n = 10 137) Counselling 17.6% (4.8%–30.5%) 40.4% (32.8%–47.9%) 44.1% (36.1%–52.1%) 30.4% (29.0%–31.8%) Referral to specialist 5.9% (–)* 6.4% (2.7%–10.2%) 6.8% (2.7%–10.9%) 2.7% (2.4%–3.1%) * Insufficient observations for calculating 95% confidence intervals.

Christopher M Harrison BPsych(Hons), MSocHlth · Helena C Britt BA, PhD

The medical humanities are concerned with “the science of the human”, and bring the perspectives of disciplines such as history, philosophy, literature, art and music to understanding health, illness and medicine. The medical humanities are designed to overcome the separation of clinical care from the “human sciences” and to foster interdisciplinary teaching and research to optimise patient care. Medical humanities have become part of the mainstream in medical education in North America and the United Kingdom, and are now integrated into many medical curricula in Australia. The Australasian Association for Medical Humanities was inaugurated in November 2004; a postgraduate program in the medical humanities began at the University of Sydney in 2003.

Jill Gordon MPsychMed, PhD, FRACGP

Story-telling can help doctors cope with the great catastrophe of illness and death Recently, I was involved in the diagnosis, suffering and, ultimately, death of my friend and patient, “Christie”. When I began to write about this experience, I thought that I was writing her story. But soon, I realised that this is my own story. Narrative, a recital of facts in the first person, has been used as a tool for people who personally experience illness. However, I believe it can be used by doctors as they try to understand the illnesses and sufferings of their patients. Christie’s storyI met Christie in my daughter’s school playground in 1989. She had recently arrived from Melbourne, and, apart from having daughters of the same age, we shared many interests. There was an instant spark. Several years after we met, I opened my own general practice and Christie came to see me as a patient. When I asked her whether she would be willing for me to do her Pap smear, she remarked that had we not already been friends, we would have become friends. She was such a warm, friendly and outgoing person that this theory of hers was probably right, although I think that when someone has been a patient first there is more reserve in the doctor–patient relationship. In September 2000, I fled the sporting mania of the Sydney Olympics and went to New York with a friend. We wined and dined, went to live theatre, saw all the tourist attractions and climbed the World Trade Center. It was a wonderful holiday. It was an abrupt return to reality when, on my first day back at work, I learned that, in my absence, my colleague had seen Christie — and had found a lump in her breast. The biopsy report was on my desk. I knew as soon as I read it that she was going to die. There was not one redeeming feature. The tumour was anaplastic, there were 38 positive nodes in the axilla, and the tumour was oestrogen-receptor negative. Not only did I anticipate Christie’s early death but I also realised that I was going to have to play a difficult, painful role in the process. Already, my self-pity was threatening to overshadow my grief for my friend and her family. The next three-and-a-half years were, for me, a tragic example of the way an aggressive tumour can destroy a human being. Christie, of course, handled the whole affair with flair. She had surgery, radiotherapy and chemotherapy. She passed through an era of hats and scarves that hid her hair loss. Through it all, she remained cheerful and optimistic. I do not try to hide the truth of a difficult prognosis with my patients, but do make an effort to break the news gradually. I also think it important to maintain hope and optimism. So, for me, making sure that Christie understood the hopeless nature of her cause was incredibly difficult for me. After the initial flurry of medical intervention, there was a period of relative calm. For about 12 months the only medical treatment Christie received was trastuzumab (Herceptin), known to slow the growth of oestrogen-receptor-negative breast cancer. She resumed her previously hectic social schedule, and her friends would tell me how wonderful it was that Christie had made such a great recovery from her breast cancer. My secret knowledge ate at me like a personal malignancy. She came to see me as her doctor again in May 2002. She had just had a routine follow-up CT scan and wanted to discuss the result with me rather than her oncologist. There was a mass of enlarged lymph nodes in the left supraclavicular space. The cancer was back. I broke the news as gently as I could, but she was devastated. Her fear for the future was written all over her face. I referred her for radiotherapy and she went through another period of intensive treatment. Without complaint, Christie suffered the accompanying fatigue and the skin burns. This period of intense treatment was followed, once more, by relative calm. I did not know which of Christie’s initial visible fear or her later cheerful front was the more difficult for me to witness. But the gaps between crises were shortening. The next problem arose less than six months after the radiotherapy. Christie was getting short of breath. A simple chest x-ray revealed the problem — fluid in the left side of the chest cavity. A day-trip to hospital was all that was required to drain the fluid, but pathology analysis confirmed the presence of malignant cells. The cancer was on the march again. In July 2003, I made arrangements for my own family to have a holiday — two weeks in the surfer’s paradise of Angourie, on the north coast of NSW. On my last day at work, Christie came to see me. This time, she was really in trouble: she had a constant burning pain in her left arm and marked weakness. The cancer had begun to invade her brachial plexus. Christie wept uncontrollably in my office. I held her and comforted her as she explained the frustration of having a useless arm. She couldn’t cook or hang out the washing. She couldn’t do up her bra or pull up her underpants. I did what I could for her neuropathic pain and referred her to the pain clinic. Then, I went on holiday. During that holiday, I spent many moments thinking about what Christie was going through. Sometimes when I was enjoying a moment in the sun, a walk on the beach, a card game with the family and, once, as I was pulling up my underpants, I thought of her and wept. I wept for her pain and frustration, for the bitterness of terminal illness in those too young, and my frustration in being able to do no more than observe, pity and weep. Over the next three months, I saw less of Christie. She was deep in the clutches of the medical machine. The most important person was her pain specialist. Every possible pain-relieving drug, including huge doses of morphine, failed to relieve her pain. Finally, her oncologist decided that depression was exacerbating the pain and she should see a counsellor. She went once, but informed the oncologist that, although the counsellor was lovely, she would find it much more helpful to talk to her GP. So began for me the most difficult period of all. Christie came to see me once a week. We spent at least half an hour together as she discussed the pain and practical difficulties of her situation, as well as the worsening prognosis. Sometimes we met at my surgery; sometimes I would go to her house. At about this time, she was going away for a weekend with her husband. I think they knew that the end was not far away and wanted some time alone. The day before they left was our counselling day. Christie told me how much she wanted to be sexy one last time for David, but how she was unable to get comfortable enough even to think about making love. Never before had I been required to help anyone with this dilemma and never had I felt so useless. In the following month, the cancer spread under the skin of Christie’s chest and the tumour broke through the skin, erupting into a foul-smelling sore. Nurses came daily to dress the wound and apply antibiotic gel to try to control the smell. I was unable to offer any way of preventing this from getting worse, and I was appalled at the ability of uncontrolled cancer to eat away at the flesh and dignity of such a lovely lady. Christie’s youngest child, “Henry”, who was seventeen, came to see me to talk about the way he was feeling. He had clinical depression. Although the management of his depression was within the scope of my expertise, it was beyond my coping skills. I referred him to an adolescent psychiatrist. Christie was severely distressed about her son’s depression and we discussed her guilt and grief about it. Her worry about dying and leaving the family was now compounded by her fear that something would happen to Henry. She felt it was all her fault. As a mother of teenage children, I knew what it was to worry about the effect that your life might have on them. I had spent a lot of energy dealing with the guilt that my commitment to my patients might have interfered with their capacity to become well-adjusted adults. Over Christmas 2003, Christie’s whole family went to their holiday house at Avoca on the NSW Central Coast. They rang me on Christmas Day and again the following day for help to try to keep her pain under control, but we all had to admit defeat and Christie went back into hospital. Finally, the decision was taken to install a ventricular pump to put narcotics and local anaesthetic directly into the central nervous system. The pain specialist had been promoting this idea for some time but Christie had been reluctant to submit to a procedure that was both invasive and irreversible. Thankfully, it was a successful exercise and, at last, her pain was controlled. Within a month of this step forward, Christie’s oncologist rang me. The tumour was spreading into the epidural space in Christie’s neck and the decision had been made to stop chemotherapy and admit defeat. Despite my knowledge at all times of this inevitable outcome, the news, when I heard it, made my heart race and my spirits sink. The end would arrive within a few weeks, and I was not ready to face that. As I grappled with this news, I found myself able to discuss the theoretical implications of certain types of treatment with the oncologist as though Christie were no more to me than any other patient. It made me angry with myself even while I recognised that I was displacing my anger at her impending death in the only way I knew. Christie died, aged 52. CommentaryIn a society that has attempted to remove much of the pain associated with living our lives, illness and death remain the great catastrophe. There has been a recent explosion in illness narrative — the telling of the facts that relate to a personal experience of illness. Broyard wrote: Always in emergencies we invent narratives. We describe what is happening as if to confine the catastrophe.1 It would also seem that, with patients, this may be because they need to reclaim their illnesses from our increasingly complex, technological and hospital-based health systems, which consider all illness within a biomedical model. Illness narrative can help patients to create meaning from memory, validate themselves as people in the role of patient, and reflect on the significance of the experience on their lives. It also helps them to come to terms with pain, whether the pain is physical, emotional or existential. Illness narrative may also have a therapeutic role to play in their illness, although this is not proven. In The Wounded Storyteller, Frank broke illness narrative down into three different types of stories — the restitution narrative (illness interrupts a life, is fought successfully and life resumes), the chaos narrative (no discernible narrative order, no happy outcome and the most difficult kind to read) and the quest narrative, in which not only does the patient overcome their illness but in the process something is gained either for the patient themselves or for the wider good.2 Chandler, in her essay on autobiography, describes three aspects of healing which flow from the writing: catharsis, restoration and transformation.3 These can be seen to fit into either restoration or quest narratives in the Frank model. Narrative can also be used by doctors. Hunter explains how, from the earliest days of medical training, doctors are taught to use narrative, both verbal and written, to understand and interpret the story of a patient’s illness.4 Medicine is fundamentally narrative...and its daily practice is filled with stories... Much of the central business of caring for patients is transacted by means of narrative... Medical stories are a well established way of sorting through and tackling problems of diagnosis and treatment... In such a scientific discipline it is surprising to find this unexpectedly familiar way of making sense of the facts. 4 True narrative, rather than case history, can be used to understand and explain the complexities of the person and their reaction to illness, as it affects their lives and the lives of those around them. Of course, the doctor will tell a different version of the story than the patient. The patient tells of the effect of the illness on a life, where the doctor tells, at least, the story of the identification and treatment, but perhaps can tell much more. In the same way that the 20th century has hospitalised illness, death and dying have also been taken out of the community and relegated to the hospital or hospice. Segal discusses the way in which the public sees death as part of the human experience, while the medical profession sees death as the failure of modern medicine.5 It is not only hard for patients and their families to face death and dying — it is also hard for doctors: The ability to cope with dying patients does not come easily. Society has not prepared one for such interaction.6 Medical education does not prepare doctors to deal with death and dying. Remen talks about the way in which medical training may even undo some of the inherent life skills that we have to deal with death and dying.7 The emphasis of modern medicine is on cure; and, in a narrative sense, doctors may only want to tell restitution stories. Accepting that death is inevitable for a particular patient usually invokes a sense of failure: People enter the medical profession to help; when they find that they cannot give good news, they often feel terrible and impotent and they tend to retreat.8 Further, discussing the issues that relate to dying and death is hard to reconcile with a professional relationship that emphasises the importance of an emotional distance between doctor and patient. Although there is a more general acceptance of death as a natural part of life in general practice than in hospitals, the myth that modern medicine can always find an answer persists for both doctors and their patients. Kübler-Ross found that specialists in her hospital were reluctant to refer patients to her program because to admit that the patients were dying was to acknowledge a failure to cure.9 It is true that “most of us learn to cope with the life and death scenario with denial”10; but there is a need for doctors to be taught other, better coping mechanisms. Dealing with the dying and death of someone close to you creates special dilemmas. Working with a dying patient can create a special relationship. Contact becomes more frequent as death approaches and there are more physical problems to solve. Contact often takes place in the patient’s home, which can create an emotional closeness, and there is often more involvement with the patient’s family members. McNamara wrote: Facing death, whether it be our own, that of someone we love dearly or someone we feel responsible for, presents us with a unique challenge... Inevitably the frequent contacts with dying people awaken some personal response...if you’ve given a bit of yourself to them, you lose that something when they die.11 Loss and disappointment are common experiences in the practice of medicine, and acknowledging this is important. I think narrative can be a good way to express the loss and at the same time to put it in perspective. Remen strongly believes that grieving is necessary, and not readily undertaken by doctors.7 Crying alone or with the patient is the method that she proposes. I believe that writing the story is another way in which the caring professional can come to terms with the grief and distress. I certainly found the writing of Christie’s story to be both cathartic and helpful in organising my memories. There is a strong sense in which writing it all down allows one to think about it less. Faber-Langendoen obviously shared that experience with me. Even though she was an oncologist and dealt regularly with dying patients, when confronted by the imminent death of her own mother she found herself ill-prepared to face the issues.12 She wrote a narrative as part of the “coming to terms” process, but failed to decide whether she had been able to successfully combine her roles as doctor and daughter. I believe narrative can also help professionals reclaim their caring role in the care of suffering patients. If doctors were to write more accounts of their dealings with patients, it would help people to better understand the issues faced by them as they attempt to manage the burden of sickness. And, doctors who do not write might take comfort from reading what other doctors have written.

Anne P Hellman MB BS

Linda Mann, a Sydney GP, proposes ways of potentially enhancing patient care and reducing hospital stays, without increasing overall healthcare costs. Her suggested solutions include making it simpler for all healthcare practitioners involved in caring for the same patient to share (rather than not share) all patient information by applying the information technology of today (rather than tomorrow). Also, pooling some funding from state and federal sources could allow for further “seamless care” at areas of reasonable overlap between the current “silos” of hospital-based and community-based care. The type of scenario described in Box 1 is not uncommon. Contemporary healthcare cuts patient care into separate events by erecting barriers at the boundaries of what we have come to see as “hospital practice” and “general practice”. As a result, Mr A and his doctors face several barriers to optimal care: Patient information can be found in many places. Individual carers may not be aware of all the other places where patient information is held; Information about patients may not be shared within, let alone outside of, an institution; If a practitioner is not “within” an institution, the institution has no easy way of sharing care with the practitioner. It may be easier to duplicate not only clinical notes, but also tests and procedures, rather than look for information kept elsewhere; Institutions guard their healthcare resources and limit access to them. This is because they cannot afford to provide all the healthcare needs of all of their patients, irrespective of whether the care is delivered in the hospital or the community. Fragmentation of healthcare leads to poorer patient outcomesThe claim that patient care suffers because of the fragmentation of healthcare delivery is not new. In 1994, the US Primary Care Policy Fellowship observed: “Three barriers to health care are shared by all vulnerable populations: inaccessibility of care, fragmentation of care, and cultural insensitivity on the part of care providers”.1 Patients can get different forms of treatment from institutional sources or community sources (each funded from a different arm of government) for the same condition, with the same outcome but different costs.2 Fragmentation of care, which occurs even within institutions, is inefficient.3 Care is often discontinuous,4 with knowledge, culture and activity being housed in separate “silos”.5 Institutions guard their resources for good reasons: they must account for every dollar and relate the money spent to health activity and occasions of care of the patients within their boundaries. We are all required to “do more with less”. As a result, in order to benefit from resources provided by an institution, a patient must become a patient of that institution — leading, inadvertently, to potential fragmentation of healthcare. Communication between an institution and other people or organisations is sometimes distorted, leading to errors such as prescription critical incidents. For example, hand-written medical instructions can be misinterpreted, with 12 units of insulin being misread as 120 units if the prescriber uses the abbreviation “u” instead of writing out the word “unit”.6 Different funding sources for curative care (usually institution-based) and chronic care (usually community-based) create tension in the provision of medical care and in decisions about how that care should be funded.7 I believe general practitioners (GPs) are willing to provide whole-patient care, but are frustrated by barriers dictated by the “origin” of funding. In New South Wales, for example, interpreters are available in person for a patient attending a hospital clinic after a sexual assault, but not for a patient attending a GP or a sexually transmitted diseases clinic. In my own experience, patients who have been seen and diagnosed with a fracture in a general practice had to be seen by junior staff at a central Sydney teaching hospital before they could gain access to the hospital fracture clinic, because the clinic did not accept GP referral. I fully acknowledge that while some patients are well served economically and socially with care provided outside an institution, achieving the same clinical outcomes,2 certain forms of care can only occur inside institutions. We know that many conditions (eg, breast cancer, acute stroke and diabetes in pregnancy) respond better to care provided by a dedicated team.8 However, medical advances do allow care for some conditions to be appropriately resited from one side of the institution/community barrier to the other. For example, Doppler diagnosis of thromboembolism and the availability of new anticoagulants have allowed some patients to be diagnosed and treated in the community without requiring hospital admission, and community-acquired pneumonia is now most usually diagnosed, assessed clinically and treated out of hospital, facilitated by the use of small, portable oximeters. However, once care occurs outside an institution, patients with such conditions lose their access to institutional services such as specialised physiotherapy (eg, of the hand), social work and occupational therapy. How can we change this scenario for the better?I think we could reduce this fragmentation of healthcare by improving communication and sharing resources within the healthcare system. It would involve the patient, rather than interventions or healthcare practitioners, becoming the centre of care; however, it would not involve increased overall funding but rather a funding readjustment. And yes — even shorter hospital stays would result. Make it simpler to share (rather than not share) informationThe late Dr John Paterson, former Secretary of the Victorian Department of Health and Community Services, dreamed of a unified medical record and patient-centred medical economics. Paterson envisioned three important principles for streamlining the healthcare system:9 Develop a longitudinal patient record for each patient. At each contact, the provider would add new data to a centralised patient record and get paid for the service. Thus, a cumulative record would build up for each patient. Gradually roll funds into one budget pool. Cap pooled funds as a whole and then regulate entitlements at the patient end, rather than at the source of funding. Along similar lines, the concept of teams that deliver “seamless care”, overcoming gaps in information sharing and making the duplication of tests or medical effort unnecessary, has arisen. Genuine seamless care10 depends on a host of characteristics, including the culture of the “actors”,7 their previous investment in knowledge management processes11 that encourage movement (rather than hoarding) of knowledge, and the promise of access to new funding sources. If we could change the emphasis from “craft”-centred teams (eg, with a melanoma social worker and an orthopaedic physiotherapist and so on) to a patient-centred team (made up of an in-hospital specialist, a GP, a pharmacist, and a physiotherapist — either within or outside the institution), we may find workable new combinations of teams that benefit the patient by crossing current boundaries. Current examples of this are the “smart card” trial for patients with heart disease in Brisbane Waters12 (where hospital discharge records provide core information that is accessible on-line by GPs and other health providers), and trials of information sharing in central Sydney.13 In Sydney, use of an existing web platform (Ozdocsonline) allows patients, carers and institutional outreach nurses and GPs to develop interactive management for patients with heart failure. Coordinated care trials are under way to assess whether such “seamless care” is cost-effective and whether it delivers equivalent health outcomes.14,15 (The results from the second round of these trials, which began in 2001, are awaited.) The trials involve service providers working in public, private, and non-government organisations; community and institutional healthcare settings; community support services (such as Home and Community Care); and residential aged care. The trials “will be supported by improved data systems between participating services, and more flexible funding arrangements to enable movement of funds between services as required by an individual’s care plan”.14,15 Use information technology to enhance communicationExisting hospital and state area sector intranets, currently protected by firewalls, could be changed to Internet-based systems using PKI (public key infrastructure) or some other secure entrance to the platform. This would permit off-site, secure access to notes, results, messaging and communication. Such access systems are already being introduced in the United Kingdom.16 Health workers on home visits could use handheld devices to download patient information from a central source, allowing each and every team member caring for a patient to have access to all available information. Information Technology Online grants, from the Commonwealth Department of Communication, Information Technology and the Arts, were given in 2004 to support three separate trials of various methods of caring for patients whose conditions require treatment in the community, then in hospital, then back in the community.13 Subsets of such a process are being rolled out via HealthConnect17 in Tasmania and South Australia. Overlap healthcare boundaries to allow for “seamless care”Overlapping the line where primary care begins and institutional care stops could be achieved without insult to any medical craft — specialists are, and can remain, the designated “bed-holders” and technologists,18 while medical generalists3 (often GPs, but also geriatricians and, especially in rural areas, physicians and surgeons) maintain patient health before and after intervention, and “stream” patients for specialist care. However, patients receiving primary care from medical generalists should be included in the definition of those entitled to access services from state-funded hospitals. This intersection should be made a common ground, not a boundary to be fought over. Patients who are receiving a state-funded phase of healthcare should be guaranteed access to federally funded care, if needed — for example, via their GPs or federally granted allied healthcare. Patients would then have better-targeted services, allowing specialists to do more for patients at their level, while liberating funds to provide resources in the community. Specialists’ and GPs’ legal and fiscal responsibilities should be re-delineated, as is already done in shared-care programs. Doctor and patient satisfaction, costs and clinical outcomes should all be audited to assess whether the desired outcomes are being achieved. Pool some funds and then apply the “health bunyas” conceptState departments of health have suggested pooling of funds19 to allow healthcare activity to follow patients regardless of where they receive care. Fund pooling has been advocated internationally to support intersectoral service supply.11 Although not a health economist, I have found myself wondering whether one effective way of using pooled funds would be to apply the concept of “health bunyas”. A bunya is a unit of goods or work used in a “local energy transfer system”, such as the one currently being used in Maleny, Queensland.20 In that town, an individual’s work or goods are exchanged in local units or tokens (called “bunyas” — after the local pine tree) which can be traded for needed goods or services organised via a directory listing of what is wanted and what is available. In the healthcare setting, an item of care, or the complications of that item of care, could be valued in health bunyas, which would then be redeemable in either the state or federal arena. The money value of health bunyas in this system could be set at levels already calculated for medical care activity — for example, the Medicare rebate for the medical component of care, or the private insurance rebate for items of allied healthcare in the community. A similar system proposed for community-oriented “shopfront” projects21 already blurs the boundaries between state and federal funding. One such project is the NSW Community Options Project, providing case management services for individuals who need services across the state/federal divide not provided by home and community care services. “Silo”-type boundaries would be re-formed to allow for “seamless care”, and might look something like those presented in Box 2. Using the alternative healthcare model I have outlined in this article, Mr A’s care could follow a very different and, I believe, more desirable path (Box 3). 1 Scenario: “How things are today” Mr A, a 70-year-old Maltese migrant with limited English, has diabetes and vascular compromise of his right foot. He also has a longstanding but stable mental illness, managed by his Maltese-speaking psychiatrist, Dr B, and his general practitioner, Dr C. Mr A attends the combined diabetic, surgical and foot clinic at the nearest teaching hospital. The clinic sends its reports about Mr A to Dr C, who scans them into her paperless patient record, but she has no direct access to the results of Doppler imaging or pathology tests. Dr C continues standard diabetes monitoring between Mr A’s clinic attendances, sending results to the clinic. The various consultants at the hospital clinic decide that Mr A needs to have a below-knee amputation. Although Mr A tells Dr C of the planned surgery, the relevant letter does not arrive until three weeks after the operation. Only then does Dr C learn that Mr A was referred to a rehabilitation hospital. Dr C does not get a discharge summary from the rehabilitation hospital, as it goes to the referring surgical registrar from the vascular team at the hospital. Mr A spends 6 weeks in the rehabilitation hospital. The patient’s family asks Dr C to intervene because Mr A is becoming depressed. Dr C contacts the rehabilitation registrar, who tells her about an impending psychiatric referral with an interpreter. The registrar is surprised to learn of the existing arrangements for Mr A’s psychiatric care, as the referral from the hospital made no mention of this. As Mr A is still in the rehabilitation hospital, the decision to continue with the new, separate stream of psychiatric care stands. Long-term effect of fragmented healthcare delivery Because of increasing allied health costs and lengths of stay when healthcare delivery for individual patients is fragmented, the wait for hospital beds for patients with vascular conditions doubles, within the space of a year, from 3 weeks to 6 weeks. 2 A suggested patient-centred model of healthcare delivery and funding 3 Scenario: “How things could be today” Mr A (the patient with diabetes and a mental illness, described in Box 1) sees his general practitioner, Dr C, regularly. On each visit, using a smart card,12 Dr C accesses a database of hospital-derived results via the Internet. Dr C adds to the Internet-based history she maintains for Mr A. She receives email notification of Mr A’s attendance at the diabetes clinic, and sends email notification to his hospital team leader when he is seen at her surgery, so that the team leader can access her information and, if desired, add it to the hospital notes. The hospital clinic consultants decide that Mr A needs to have a below-knee amputation. When alerted by email of Mr A’s latest hospital assessment, Dr C learns of the decision to amputate. She undertakes preoperative testing as per the hospital protocol (detailed on its website), and sends all results directly to the hospital — downloaded from the private pathology company. This care is funded through the federal government (via Medicare). When Mr A is admitted for his operation, the “health bunyas” system commences as part of discharge planning. Money previously dedicated to late postoperative care by nurses, occupational therapists and physiotherapists in the hospital is now pooled in a health bunyas fund. (Pharmaceutical Benefits Scheme funding of Mr A’s usual medications is also pooled into this fund during his hospital stay.) The area discharge planner adds up the bunyas that Mr A’s condition attracts, consults her list of community bodies that take part in the bunya system, and advises them of Mr A’s hospital admission. As he progresses through his stay, she writes up the plan. Dr C warns Dr B, Mr A’s psychiatrist, of his admission and makes an early appointment for him to be seen after discharge. Mr A goes home on the early discharge program to have care at home. Money from community health services, local government and Medicare is added to his bunya pool. He is attended by hospital-in-the-home nurses, who record their visits on hand-held devices and download their data daily to the Internet-based patient record, which is also accessible to Mr A’s specialist and GP members of Mr A’s team. Community resources are costed at community rates. Bunyas buy home-visit physiotherapy, a prosthesis, community transport to the day hospital rehabilitation gym and to Dr B, dressings, medications, social worker support for accessing benefits, regular specialist follow-up consultations in the hospital outpatient department or the specialist’s rooms, and postoperative home-based medical care from Dr C. Dr C works together with Mr A’s specialist via the Internet and phone to manage Mr A’s progress. Long-term effect of integrated healthcare delivery Because of cost sharing, care in the community and use of private allied health workers, the wait for vascular beds falls, within the space of a year, from three weeks to one week.

Linda Mann FRACGP

At seventy-seven it is time to be in earnest Samuel Johnson — A journey to the Western Isles of Scotland Nothing about my life has been planned, including medicine. When, to my surprise, I obtained one of the rare scholarships then available to the University of Sydney after the Leaving Certificate, I asked my father what I should do. “Medicine”, he said, “that’s a good career for a woman”. So, despite having no sciences and braving the fierce opposition of my Latin teacher, I obeyed. Nor did I know, even after graduating, what field of medicine to aim for, having spent much of my undergraduate years at Arts lectures and playing bridge. After doing the odd locum and a bit of general practice, I married a naval aviator and had six children. This removed me from medicine for 13 years. Returning to Sydney from Perth (following the fleet) and being short of money, I went to Royal North Shore Hospital (RNSH) and asked to do a refresher course by attending outpatient clinics. Although feeling like a middle-aged frumpish housewife, I was treated by each of the senior consultants, all men, with the utmost courtesy. I have honoured RNSH ever since. It was not easy to get a job. I worked first at Grosvenor Diagnostic Centre, assessing children with intellectual disability. The medical officers were at the fringe of a revolution in genetics, constantly learning about recently discovered syndromes and how to identify these as the underlying causes of the conditions in the people we saw. Yet, we were not esteemed by the medical profession, who referred to us as “guardians of the waiting list”, because we assigned priority to those most urgently in need of the few residential care places available. Our chief concern, however, seemed to be for the parents, and how to reconcile them with the pain of accepting that their children were “different”. From institutions to community careWhen my husband was posted to Melbourne, I worked in a large institution in Victoria, which taught me a lot about institutions and the danger of just accepting what occurred in them. I remember admitting a teenage boy, clinging to his tearful mother. She was at last persuaded to leave, too soon to notice that his bed had no pillow. I asked for one, but the busy charge nurse’s reply was, “I won’t allow pillows in my ward. They might fight with them or smother themselves”. Of course, we were understaffed, the few staff we had were overworked, and the residents had little supervision. So little, in fact, that one girl wandered out of her ward one night and fell into an uncovered hole containing a steam pipe — she was scalded to death. When I recollect this tragedy, I find it hard to accept the pious phrase “the dignity of risk”, which is too often used to justify neglect of people in residential care. Returning to Sydney, I was lucky to be at the start of the deinstitutionalisation program in New South Wales, but soon realised that this was not to be an easy path. Among the first people to move were a group from a large institution on Peat Island. They moved into a small cottage in Hornsby, and soon the neighbours were complaining, not because of discrimination, but because of the frequent noisy quarrels among the four residents about who should do the dishes! Human nature is no different whatever the IQ level. This same quartet looked marvellous — dressed for the first time in dinner jackets and evening gowns — for their first formal, a ball in Hornsby. As I grew older, I became interested in exercise and nutrition. I started to jog in the streets near where I lived, embarrassing my children and husband. It felt so good that I wondered how exercise would work for people with a disability. I obtained a Master of Public Health degree by doing a simple research project on this subject. Then RNSH allowed me to start a health promotion clinic for adults with developmental disability. This was soon enhanced by the arrival of a dietitian, Lyn Stewart, and an exercise physiologist, Caroline Bruce, and we became very busy. It was obvious to me that my colleagues, using nutrition and exercise, improved health faster than I did. Caroline also organised the people into teams and they went for trips at weekends, playing indoor cricket and soccer, and returned with amazing stories of their hijinks. This was a time of fanatical adherence to the philosophy of normalisation — all people with disabilities should live in the community, whatever their special needs, and participate in all community activities. Our staff struck some unrealistic expectations, including carers who refused to be involved in our sports programs, one proclaiming, “We’d rather our residents sat at home all day and never exercised, than take part in segregated activities.” We ignored these thought police, and took one group ourselves for their first sight of snow to luxurious quarters donated by a generous hotelier. At breakfast they sat down to silver and snowy table linen. “Oh look!” said one delighted young man, “we are going first class!” A trip to the snow Royal North Shore Hospital Health Promotion Clinic for Adults with Developmental Disability enjoying a weekend in the mountains. Latin and the logic of epidemiologyThe best teacher I ever had was a Dominican nun, Sister Anselm. She made me love Latin as much as she did. I later took the same delight in epidemiology, the closest thing I have found to thinking in Latin. This prompted my postgraduate studies in public health, completed with a part-time scholarship (awarded to promising public servants in the enlightened practice of the day). I applied epidemiology to the little-studied burden of disease in our patients, in whom I noticed diverse chronic and complex health problems. I obtained a Research and Development Grant from the Commonwealth Department of Community Services and Health for the first population study of health disorders in people with intellectual disability. This showed that, of a random sample of 202 adults with intellectual disability, each had an average of 5.4 medical disorders, half of which had not previously been detected.1 Colleagues in Victoria and Queensland reported that these findings supported their argument for specialised health clinics in those states. Not so enlightened were authorities in NSW, who closed the RNSH Health Promotion Clinic, in the face of many objections. The Department of Community Services’ mys-terious decision ended what was, as far as I know, the first health promotion clinic of its kind in the world. Since then I have tried unsuccessfully to reopen this clinic. An attempted retirementAt that stage, RNSH enforced retirement at the age of 65 years. I was a bored, cross, retired person, so I leapt at the chance to work for a while at Stockton Centre, a large NSW institution for people with intellectual disability. The enlightened administrator at the time, Lorraine Yudaeff, asked if I could find someone to assess the nutrition of the residents. I recruited Lyn Stewart, who had worked with me at RNSH. Lyn ran a tape-measure over some emaciated residents and recommended an enriched diet. This resulted in another study showing that 69 of the multiply-disabled residents in this 550-bed institution were severely underweight, with low levels of vitamin D, iron and folate. They were given a diet with increased caloric density for 12 months, with significant improvements in weight, in serum calcium and vitamin D levels, and in haematological indicators.2 We succeeded in increasing the weight of some very hungry people, but not without protest: one carer said we had ruined the quality of life of an adult resident who now weighed more than his previous 20 kg. He required two people, instead of one, to lift him, and was considered too heavy to take on outings, as they had no hoists. However, the noble staff of Stockton rose to the challenge. Several residents now verge on the overweight, not underweight! As a result of this work, there is now a policy of screening the nutritional and swallowing status of all people with intellectual disability in residential care in NSW. Microarrays — miniaturised assay systems allowing the structure and expression of thousands of genes to be evaluated My mentors and medical detective work I first met Professor Gillian Turner as her locum at Grosvenor. Gillian is now known internationally as a geneticist and has done the fundamental work on identifying the Fragile X syndrome, the most common inherited genetic cause of intellectual disability. This work began when Gillian was a medical officer at Grosvenor and introduced me to the intellectual fascination of dysmorphology and genetic disease. I enjoyed being a medical detective and identifying syndromes. The explosion then occurring in genetics is about to recur, with new technologies such as microarrays (Figure) that will make diagnosis more accessible. Given that a diagnosis can make all the difference to prognosis and treatment of associated physical disease or behavioural phenotype, a group of people much ignored by medicine will be taken more seriously in the future. I once excitedly asked Associate Professor Aidan McElduff (Endocrinologist) in the corridors of Royal North Shore Hospital whether a patient I had referred to him could have Kallman’s syndrome. Aidan looked surprised and said he supposed she could. This turned out to be the underlying aetiology. I was in awe of Aidan’s many qualifications and his far greater knowledge of medicine, but he has since become a mentor, a coauthor of published articles, a collaborator in studies on osteoporosis and hypogonadism, and an expert on the endocrinology of intellectual disability. Aidan once thanked me for introducing him to a new medical specialty, Intellectual Disability Medicine. Battling medical nihilismIt was generally considered inevitable that people with intellectual disability die young, which prompted Seeta Durvasula (Medical Lecturer in Developmental Disabilities, Centre for Developmental Disability Studies, University of Sydney), Wes Baker, Senior Planning Officer, Northern Sydney Health, and myself, to investigate mortality rates in a previously identified cohort of 693 people with intellectual disability in northern Sydney.3 We found that the death rate was five times higher than that of the general population of Sydney’s Lower North Shore.4 Furthermore, the causes of death were quite different from those in the general population, being predominantly respiratory disease and accidents. Seeta Durvasula recently presented data from this ongoing study at an international conference, showing that up to a quarter of these deaths were preventable. Contributory factors, such as inadequate supervision, delayed presentation and delayed diagnosis of illness, were identified. The challenge is now to reduce premature mortality and to treat remediable disease. The NSW Ombudsman is charged with the responsibility for reviewing all deaths of people with disabilities in care, looking at the causes and patterns of death and recommending ways of improving services to reduce early or preventable deaths. This important initiative has been noted internationally and may be replicated in Scotland. We also need to beware of medical nihilism. It is one thing to strive officiously to prevent the demise of an elderly person ravaged with disease. It is another thing to deny treatment to a young person with spastic quadriplegia who is enjoying life but swallows unsafely. I am reminded of a senior consultant with whom I discussed the need for supplementary feeding in some young individuals. “Why treat them”, he said, “aren’t they just vegetables?”. An international movement in intellectual disabilityI presented papers at meetings of the International Association for Intellectual Disability (IASSID) every four years, but found health professionals at these conferences often cowed by our non-medical colleagues, who considered us relics of the past, detested institutions. Encouraged by the then Australian President of IASSID Professor Trevor Parmenter (now Foundation Chair and Director, Centre for Developmental Disability Studies, University of Sydney), a Dutch physician Professor Heleen Evenhuis and I formed the Health Special Interest Research Group of IASSID. This Research Group now has yearly international meetings, and its achievements include developing health targets for adults with an intellectual disability.5,6 These targets address conditions that are highly prevalent, easily identified and amenable to available treatments (eg, regular assessments of hearing, especially if communication problems exist, and of dental and ocular health). The targets have been accepted by IASSID and presented to the World Health Organization for ratification. The future: developmental disability medicineA medical specialty will be established in this field. In The Netherlands, such specialists already exist, while, in the United Kingdom, psychiatrists who have specialised in learning disability are often attached to multidisciplinary teams working with people who have learning disabilities. It is clear, too, that doctors with such specialist knowledge must collaborate with nurses, psychologists, dietitians, speech pathologists, physiotherapists and occupational therapists. If it is possible to have multidisciplinary teams in aged care, such teams should also be available for people with disabilities. Of Australia’s total population, 1.86% have an intellectual disability.7 Thus, this group of people constitutes a population about the same size as our Indigenous population. In my opinion, a specialist clinic at each teaching hospital in Australia is required to support general practitioners caring for people with intellectual disability. In Victoria and Queensland, at least, university-affiliated academic centres for developmental disability provide government-funded medical services. In NSW, the Centre for Developmental Disability Studies at the University of Sydney is not so funded, but has helped me to establish a medical clinic with two other doctors, funded by billing Medicare. Our six-month waiting list illustrates the level of unmet need. Australians with disabilities —predominantly receiving pensions and with no political clout — are caught in a dysfunctional system. Formal responsibility for health and other services has largely passed from the federal to the state governments, with further buck-passing between health and social service departments within the states. Yet, much of their healthcare rests with GPs, funded by the federal government. I was founding chair of the NSW-based Association of Doctors in Developmental Disability (ADIDD), which lobbied for people with disabilities and their need for specialised health services. As it became obvious that this was a national problem, we have now formed the Australian Association of Developmental Disability Medicine (AADDM), which aims to establish national standards in healthcare delivery, lobby federal politicians, issue policy documents and position statements, and, eventually, train specialists in this field. I am lucky to have been present at the beginning of a new branch of medicine. I hope that advances in genetics will eventually lead to a therapeutic revolution for people born with intellectual disability. Meanwhile, we need more medical champions for this vulnerable but silent minority. Receiving an award Member of the Order of Australia (AM) in 2004, receiving the award from Her Excellency Professor Marie Bashir, Governor of New South Wales (left).

Helen P Beange AM, MB BS, MPH, FAFPHM