Remote Health – TjilpiDoc

Rheumatic Heart Disease – Time for a rethink?

Acute Rheumatic Fever (ARF) and Rheumatic Heart Disease (RHD) are increasingly rare in wealthy societies but remain prevalent in the Third World and marginalized groups. Prophylactic treatments have not changed since the 1950s. There is a need for improved diagnostic and treatment solutions.

One hundred years ago in Western society, Acute Rheumatic Fever(ARF) and Rheumatic Heart Disease (RHD) were common. Many sufferers were condemned to an early death with heart failure. Nowadays these diseases are all but unknown in most resource rich Western societies and interest in research has declined. But the disease is still common in the Third World and in marginalized groups in the West such as Remote Indigenous Communities. Indeed Australia has the highest rates in the world in Remote Northern Territory. We still use prophylaxis developed in the 1950s and treatment remains unchanged

The history of prophylaxis (1)

With the discovery of antibiotics in the 1920s and 1930s, and the linkage of Rheumatic Fever with the infection by Group B streptococcus, attention turned to antibiotic treatment. It was found that Sulphonamides reduced the incidence of recurrent attacks of Acute Rheumatic Fever and progressive valve damage.

When Penicillin was discovered in the 1940s it proved to be even more effective and less prone to side-effects than Sulphonamides. But all these regimes need frequent administration. A poorly soluble depot Penicillin preparation known as Benzathine Penicillin was developed in the 1950s and has remained the mainstay of prophylaxis for RHD ever since. It can be administered by injection every 3-4 weeks. While there has never been a controlled trial of this regime, there is good empirical evidence that it reduces ARF recurrences by two thirds. Group B Streptococcus has remained sensitive to it when many other bacteria have developed resistance. In recent years Benzathine Penicillin has been increasingly difficult to source as drug manufacturers turn to more lucrative drugs. Patients have become more resistant to painful intramuscular injections. In spite of Benzathine Penicillin’s success, there is clearly a need for a better prophylactic solution.

The History of Treatment

Treatment of an episode of Acute Rheumatic Fever remains symptomatic – analgesia for joint pain, antipyretics for fever and Valproate for Chorea. There is no current treatment to reduce the autoimmune mediated damage to heart valves. As far as I am aware there are no treatments under development. Any residual Streptococcal infection is treated with Benzathine Penicillin.

The History of Diagnosis

Acute Rheumatic Fever (ARF) has always been a clinical diagnosis and remains so today. There is no single source of truth – the diagnosis is made on the basis of major and minor criteria as devised by Jones (5). These criteria have been revised and relaxed over time to make them more sensitive. The corollary of this is that they have become less specific, particularly as the disease has become rarer. The “pretest probability” problem comes into play. In a low probability population (RHD is still relatively uncommon, even in Remote settings), a test or intervention with poor specificity will generate many false positives. The symptom/sign that generates most problems is joint involvement. Fever and arthralgia are common in various illnesses. Objective arthritis is less common, polyarthritis even less so. In the early days of the Jones Criteria, 2 major and one minor criterion were required for a diagnosis. This has now been relaxed to one major and two minor criteria. Moreover in the early Jones criteria, the only major criterion involving joints was polyarthritis – ie objective signs of arthritis (redness, warmth, effusion) in several joints. This is now relaxed to allow monoarthritis or even polyarthralgia (subjective pain in several joints) as a major criterion. In practice this means that a patient presenting with fever and arthralgia (common in viral illnesses), but without any other relevant signs can be labelled as ARF. Often the details of a clinical presentation are not recorded. In particular the results of examination of joints may not be available. Other major criteria such as carditis (Echo changes, new murmur, heart failure) and Chorea are more specific and predictive of ongoing RHD. In practice, the oft described eythema marginatum and subcutaneous nodules are rarely seen. Interestingly the finding of PR changes on ECG has never been regarded as a major criterion or evidence of carditis, though it appears to be specific in practice and is easy to perform at first assessment.

Incidence (2,4)

Rates of both ARF and RHD have been increasing in recent years. The reason for this is not clear – I have discussed the possibilities in a previous post

https://tjilpidoc.com/2024/06/13/rheumatic-heart-disease-a-new-epidemic/

In a paper from 2011, after a first ARF diagnosis, 61% developed RHD within 10 years. After RHD diagnosis, 27% developed heart failure within 5 years. So it is important to identify patients with ARF and prevent recurrences with prophylaxis.

There were 172 cases of surgery for RHD in indigenous patients in Australia and NZ in the period 2001- 2012 (3). On average this is less than 20 cases a year.

In 2023 in Queensland, Western Australia, South Australia and the Northern Territory, 97 people underwent surgical events for RHD (one event per person). Most of these (75 people, 77%) were First Nations people. (ref)

So clearly there has been an increase of RHD clients undergoing surgery – is this due to better access or is there a real increase in RHD?

The Northern Territory appears to have a dramatically higher incidence of ARF and RHD than other states with significant indigenous populations such as Queensland and WA. Again the reason for this is not clear – it seems intuitively unlikely that these indigenous populations are less prone to RHD.

Promotion of ARF diagnosis

There has been increased awareness of ARF and RHD in Remote communities in recent years with campaigns to educate health staff and promote the idea that ARF should be considered in patients presenting with fever and joint symptoms. While this is admirable, we know from a 2005 study that many patients entering hospital with a provisional diagnosis of ARF have an alternative at discharge. (6) Because of this promotion, ARF has become the “probability diagnosis” with this scenario in many places. Streptococcal titres have become a defacto criterion when in fact they are a poor positive discriminator of ARF. Diagnostic “precision” appears to have declined with alternatives not considered. Many of these patients do not not have an authoritative assessment by a senior clinician at the time – this is deferred to a later date. This is problematic because relevant clinical symptoms and signs resolve or the patient may not see the clinician at all. Once a provisional label of ARF/RHD is attached to the patient, it can be impossible to remove, even in doubtful cases.

What are the costs of misdiagnosis?

There is a significant imposition on the client with a diagnosis of ARF. They are subjected to monthly injections and periodic reviews for anything up to 10 years. The Health service also bears significant costs. Some of the differential diagnoses of ARF carry significant risk (eg osteomyelitis, septic arthritis, Slipped Capital Femoral Epiphysis). Clearly if these are not treated in a timely fashion there is a risk of long term disability or even death.

Outcomes from different presentations

Many cases of RHD are found when they are already established, presenting as heart failure, murmurs or on screening (eg “Deadly Heart Trek”). Those presenting with Chorea have a high correlation with later development of RHD. While the paper I have previously quoted suggested a high rate of RHD development in all cases of ARF, on my personal review of records those presenting with joint symptoms alone appeared to have a lower rate of development of documented RHD even after some years

Where to from here?

ARF/RHD remains a significant problem in Remote Australia and marginalized groups but treatment and assessment protocols have not changed in recent years. ARF remains a clinical diagnosis. There is a significant rate of misdiagnosis with associated costs and risks. If a single test to prove or disprove ARF could be developed, this would be an advance. There has never been a treatment to reduce the immune mediated harm of ARF. In the age of targeted antibodies, perhaps this issue could be revisited. A better prophylactic drug should also be sought.

In the meantime it should be policy that all new cases of ARF are assessed at the time by a Senior Clinician to avoid “mislabelling” as much as possible.

References

(1) Evolution Evidence and Effect of Secondary Prophylaxis for Rheumatic Fever

Wyber, Rosemary^1,; Carapetis, Jonathan^1,2

Journal of the Practice of Cardiovascular Sciences 1(1):p 9-14, Jan–Apr 2015. | DOI: 10.4103/2395-5414.157554

(2) Acute rheumatic fever and rheumatic heart disease: incidence and progression in the Northern Territory of Australia, 1997 to 2010

Joanna G Lawrence¹, Jonathan R Carapetis, Kalinda Griffiths, Keith Edwards, John R Condon

10.1161/CIRCULATIONAHA.113.001477

(3) A review of valve surgery for rheumatic heart disease in Australia

Elizabeth Anne Russell ^1,2, Lavinia Tran ², Robert A Baker ³, Jayme S Bennetts ^3,4, Alex Brown ^5,6, Christopher Michael Reid ², Robert Tam ⁷, Warren Frederick Walsh ⁸, Graeme Paul Maguire ^1,2,9,✉

BMC Cardiovasc Disord. 2014 Oct 2;14:134. doi: 10.1186/1471-2261-14-134

(4) Recent increases in incidence

AIHW data Acute rheumatic fever and rheumatic heart disease in Australia, Acute rheumatic fever – Australian Institute of Health and Welfare

(5) Rheumatic fever Identification, management and secondary prevention

Australian Family Physician

Volume 41, Issue 1, January-February 2012

https://www.racgp.org.au/afp/2012/january-february/rheumatic-fever

(6) The challenge of acute rheumatic fever diagnosis in a high-incidence population: a prospective study and proposed guidelines for diagnosis in Australia’s Northern Territory

Anna Ralph 1, Susan Jacups, Kay McGough, Malcolm McDonald, Bart J Currie

Heart Lung Circ . 2006 Apr;15(2):113-8.

Rheumatic Heart Disease – a New Epidemic?

The incidence of Rheumatic Heart Disease (RHD) in Remote Australia has apparently increased in recent years. In part this is due to increased screening and possibly improved case finding. But Overdiagnosis due to reduced clinical standards may also explain the increase. The overdiagnosis of ARF can lead to unnecessary burdens on clients and the Health Service and increases the risk of overlooking other serious conditions. This highlights the need for improved diagnostic precision at first presentation.

The incidence of Rheumatic Heart Disease in Remote Australia appears to have increased significantly or even doubled according to some surveys in the last 10 years or so. (1)

What is happening? Are living conditions in Remote Communities getting worse still? Are we finding previously undiagnosed RHD?

We know that Acute Rheumatic Fever(ARF) and Rheumatic Heart Disease(RHD) are diseases of poverty and overcrowding. They are largely unknown in modern urban Australia but still are common in Remote Communities, particularly in NT.

While living conditions in many communities are still “third world” standard, I can find no evidence for further worsening in recent years and my own anecdotal experience over 20 years or so would suggest that things are no worse than they have been in the past. “Closing the Gap” reports show little improvement, but they do not suggest worsening of living conditions and life expectancy.

Are we detecting previously undiagnosed disease?

In my anecdotal experience virtually every person in a community presents to the clinic, often frequently. It seems intuitively unlikely that significant symptomatic heart failure as a result of valve dysfunction would not have been picked up on presentation. Echocardiogram and cardiology review is available for acute symptomatic disease. Heart failure due to acute carditis or deterioration of RHD is uncommon, but can be confused with more common conditions such as pneumonia. Adverse outcomes as a result are likely to occur (https://tjilpidoc.com/2022/03/09/poor-administration-a-health-hazard/)

There has been an understandable promotion of screening by Echocardiogram with programs such as the “Deadly Heart Trek” which have found asymptomatic RHD in some clients. It is generally accepted that prophylactic Penicillin reduces recurrence of ARF and deterioration (though there are no prospective trials to prove this). Thus finding asymptomatic clients and treating them with prophylactic Penicillin would seem intuitively a Good Idea. But like all screening processes it can be difficult to show benefit – whether this screening will result in improved outcomes is yet to be established.

Overdiagnosis

There is one other possible explanation for the apparent increased incidence – that we are over-diagnosing ARF. In recent years there has been promotion of the idea that clinicians have been missing cases of ARF and should be on the lookout for it to reduce the incidence of serious RHD with prophylaxis. Once a diagnosis of ARF is established, even provisionally, that client is subject to a regime of monthly injections and reviews for anything up to 10 years. Many clients are discharged from hospital at their initial presentation without an expert assessment and classification – this is relegated to a later date. But elective Echocardiography and Cardiology review are difficult to access for Remote clients for various reasons. It may be months or even years before these are performed. By this time the relevant clinical signs and data may be lost or otherwise unavailable. As a result even senior clinicians are reluctant to reverse a provisional diagnosis and it can be difficult if not impossible to remove the Rheumatic Fever “label” once it is applied.

ASOT AntiDNAse and streptococcal serology – what is the normal?

Acute Rheumatic Fever increases Antistreptolysin Titre (ASOT). The upper laboratory limit of normal in Australia is 200 IU. But the majority (65%) of asymptomatic subjects had a level >200 IU with some being as high as 800 IU. The level increased with age>10 and season (winter) in an Egyptian study (2). In Australia it is likely to be high in Remote Community subjects because of living conditions and frequent exposure to Group A Streptococcus, but I could find no research on this question for Remote Australia. However, it seems likely that normal levels are much higher than the accepted laboratory range. This makes it a poor positive discriminator for ARF, though it may be helpful in ruling out the disease if it is negative. Similar issues apply in the case of AntiDNAse.(4)

The Clinical Criteria for ARF

Skin infection is common and is the likely source of streptococcal infection in most cases of ARF, at least in the Top End and tropical Australia. (McDonald et al). In spite of this, conventional teaching still sees pharyngitis and tonsillitis as the primary source. Acute Rheumatic Fever remains a clinical diagnosis – there is no independent lab test or other indicator which can reliably discriminate it from other diagnoses. The diagnosis is made on the Jones Criteria, which were first introduced in 1944. They have been modified several times since to increase their sensitivity in low risk populations. This has the effect however of reducing specificity. In reading the references there still seems to be ambiguity, particularly with regard to arthritis/arthralgia. In the most strict version of the criteria, only polyarthritis was allowed as a major criterion – ie several joints involved with objective signs such as effusion and redness. In the more recent versions monoarthritis or even polyarthralgia are allowed as major criteria in high risk areas. Chorea is probably pathognomonic in young people as other causes of acute Chorea are uncommon. “Carditis” can be difficult to define in a Remote setting where echocardiography is not generally available on the spot. A small group of patients present in heart failure due to carditis – these are challenging to diagnose and manage and errors are frequent in this group.

ARF – typical presentations

A common presentation is joint pain or arthritis with or without fever and raised ESR/CRP. Chorea is less common, with acute carditis or other presentations the least common. In my 20 years experience in Remote Health I have not seen the classically described erythema marginatum or subcutaneous nodules. Because of the increased awareness of ARF as a diagnosis, the classical criteria have been relaxed – I have seen a provisional diagnosis of ARF made on a presentation of monoarthritis or even polyarthralgia and raised CRP but without other criteria. ASOT appears to be used as a de facto criterion when it is not a positive discriminator (see above) Enthusiasts argue that any potential harm from overdiagnosis is outweighed by the benefit to a client with true ARF in reducing long term disability with prophylaxis. I would argue that the imposition on clients of an unnecessary diagnosis is not trivial, with monthly painful injections and frequent reviews for up to 10 years or more. There is a workload burden on the Remote Clinic involved and an opportunity cost as a result. The results of misdiagnosis at presentation can be significant – I have personally seen a case of knee pain in a child diagnosed as ARF when in fact it was tibial osteomyelitis and definitive treatment was delayed. On another occasion knee pain was considered to be ARF when in fact the diagnosis was Slipped Capital Femoral Epiphysis. In both these cases the misdiagnosis could have resulted in significant disability. Indeed a study at Royal Darwin Hospital showed that many of the cases admitted with presumed ARF had an alternative diagnosis at discharge. (3)

RHD presentations

The majority of clients with severe RHD requiring surgical intervention or documented valve changes on ECHO either have longstanding RHD with the details of the presentation lost in the mists of time, have presented with heart failure or have been found on Echocardiography screening. No clients who presented with joint symptoms in my case reviews showed evidence of RHD on Echocardiogram. Chorea seems a more reliable criterion with at least some of these subsequently developing RHD changes

Clinical standards

As a practitioner near retirement of course I think things were better in the old days

Our medical clinical training was rigorous with an emphasis on clinical method. This emphasis appears to have been lost in recent years – many clinicians do not take a detailed relevant history of the presentation or refer to previous attendances or past history. Examination is cursory if at all.

We have come to rely on lab testing and imaging for diagnosis when a rigorous clinical method in the hands of an expert clinician remains the most effective diagnostic tool. Many clinicians are nonmedical – they have not undergone the clinical training that doctors go through. There is a heavy reliance on telemedicine, which means that examination is limited. General Practitioners have been largely relegated to administrative tasks and navigating complex chronic disease. Their role in the assessment of acute presentations has been reduced and their opinion is often not respected. They are no longer seen as “expert generalists” at the centre of the clinical process. The assessment of an acute presentation is the classic scenario where masquerades and alternative diagnoses must be considered as well as the “probability diagnosis”. (Murtagh 6) ARF has now become a “probability diagnosis” due to its promotion as a condition which must not be missed. Unsophisticated clinicians often do not consider the alternatives. ARF is a clinical diagnosis. I have noted a tendency in unsophisticated Remote Staff to overreport clinical diagnoses (Otitis media, pharyngitis, bronchiolitis for example). Is this happening with ARF also?

Workforce issues in Remote Australia

The Remote workforce is heavily “casualized” and there is massive staff turnover in most Remote Clinics. Health encounters have become “commoditized” and anonymous – client and clinician often do not know each other. (see previous post) Many Remote Services are struggling to maintain their workforce numbers. These factors further reduce the quality and safety of clinical assessments.

ECHO – how reliable is it?

In file reviews I have noted on some occasions that an echocardiogram was reported as abnormal with Rheumatic changes but subsequent echocardiograms were reported as normal. In one case there was a normal report with abnormal reports before and after. We have always been taught that Rheumatic valve changes do not resolve with time. If this is the case then the quality of echocardiograms must be brought into question. Ultrasonography is a difficult skill, with cardiac ultrasound even more so. Where there is doubt, there is a tendency to overreport changes to avoid missing significant lesions.

Conclusions

The apparent increase in Rheumatic fever and RHD in the last decade can be explained in part by screening and finding asymptomatic patients. But it is likely that the increase in ARF diagnosis is in part due to overdiagnosis, as a result of casualization of the workforce, reduction in clinical standards, promotion of the diagnosis and reduction in the role of expert clinicians such as doctors.

This overdiagnosis has significant consequences for patients and Remote Clinics and it can be difficult to reverse the “label” once it is applied. Any patient admitted with a provisional diagnosis of ARF should undergo careful assessment by a senior clinician before discharge and classification as ARF. While it is important not to miss cases of ARF, we should be aiming to improve our diagnostic precision so that we do not impose an unnecessary burden of treatment on clients and the health service, and do not miss other potentially serious conditions.

An answer should be sought to the question – Do RHD changes resolve with time? Echocardiogram is a difficult skill – there is a need for review of some results and rigorous standards.

References

(1) AIHW Acute Rheumatic Fever and Rheumatic Heart Disease in Australia 2022

https://www.aihw.gov.au/reports/indigenous-australians/arf-rhd-2022/contents/arf

(2) Antistreptolysin O titer in health and disease: levels and significance

Alyaa Amal Kotby, Nevin Mamdouh Habeeb, and Sahar Ezz El Elarab

Pediatr Rep. 2012 Jan 2; 4(1): e8.

(3) The challenge of acute rheumatic fever diagnosis in a high-incidence population: a prospective study and proposed guidelines for diagnosis in Australia’s Northern Territory

Anna Ralph 1, Susan Jacups, Kay McGough, Malcolm McDonald, Bart J Currie

Heart Lung Circ . 2006 Apr;15(2):113-8.

(4) Detection of upper limit of normal values of anti-DNase B antibody in children’s age groups who were admitted to hospital with noninfectious reasons

Servet Delice,1 Riza Adaleti,2 Simin Cevan,3 Pinar Alagoz,4 Aynur Bedel,5 Cagatay Nuhoglu,5 and Sebahat Aksaray2

North Clin Istanb. 2015; 2(2): 136–141.

(5) Low rates of streptococcal pharyngitis and high rates of pyoderma in Australian aboriginal communities where acute rheumatic fever is hyperendemic

Malcolm I McDonald 1, Rebecca J Towers, Ross M Andrews, Norma Benger, Bart J Currie, Jonathan R Carapetis

Clin Infect Dis . 2006 Sep 15;43(6):683-9.

(6) General Practice 8^th edition

John Murtagh

The Containment of Anxiety in Remote Health

“Government policy and poor performance by bureaucracy is a significant cause of “The Gap” in First Nations Health and life expectancy.”

This is clearly a contentious statement.

However many reports have identified deficiencies in policy and its delivery which have remained unchanged over many years.

In Remote Health, many clinics appear to be in a state of chaos – staff turnover is high, morale is low and community engagement is poor. Service delivery is not measured in any meaningful way but almost certainly it could be improved. Remote communities can be a difficult environment for visitors – the journey of one such visitor is described in a narrative by Mamood (1).

This paper describes a period in the history of a fictional remote health facility in a similar narrative format. While the narrative is fictional, it will resonate with many in the remote health workforce. Similar events occur on a regular basis. The paper puts forward an hypothesis based on social psychology theory to explain these events.

A Year in the Life of a Remote Clinic

Every so often the planets align and a clinic functions well for a time

A hard working and effective manager is employed, often after a period of crisis in the clinic. While she has no formal training in management, she is a veteran of many years in remote practice, capable of dealing with any situation and able to turn her hand to whatever task is required. She has endured long lonely nights of call, facing difficult situations of distress, violence and medical emergency. She knows the issues which face the service and wants to improve things for the local people. She has watched their struggles for many years and now has a deep respect for them. She seems to have a natural affinity for people and the skills required to make them work as a team.

She engages local staff and the clinic begins to connect with the community again. Staff now stay for longer than they used to. Local people appreciate someone who knows their name and their family connections. Mothers bring their babies to a person they know and trust. Before they stayed away and were blamed for avoiding their obligations to conform with an impersonal system of measurements and injections, administered by an ever changing parade of unfamiliar faces.

A workplace culture slowly develops where hard work and a cooperative clinic environment is valued – staff treat each other and their clients with respect and courtesy. The word gets around amongst the remote health workforce that this clinic is the place to work. The manager has among other qualities, the ability to choose the right staff to maintain the good working environment she has created.

One of the qualities she is looking for is the ability to think independently and be self motivated. She is able to delegate tasks knowing that staff will perform them without supervision. As a good manager she knows that she must delegate ruthlessly so that she can focus on higher order tasks.

Still the workload is overwhelming – CQI and KPIs, ordering systems that seem to require her to communicate with an endless series of functionaries to get necessary supplies, employment processes that take months to get contracts written, constant errors by pay office which need her intervention, the vagaries and disputes of the travel subsidy system, the human foibles of staff – it seems endless.

She tries to engage an administrator to handle some of the paperwork. But departmental policy does not allow accommodation for these employees. In these communities housing for visiting workers is scarce and jealously guarded by the various agencies.

Local indigenous staff lack the computer literacy and authority to deal with the whitefella’s bureaucracy. Family obligations may prevent them from dealing evenhandedly with travel and escort disputes, but they are able to provide a connection and knowledge of the local community. If the manager is fortunate she finds a partner of a worker housed by another agency to deal with the intricacies of the whitefellas system and with local staff has the best of both worlds.

She maintains the workload for a while – weekends and evenings are spent catching up. She manages the many small crises in a remote place at the cost of her own health and sanity.

She solves the many small problems that staff have delegated up to her and then gone home to relax, secure in the knowledge that they have done their duty.

She knows the ways of the organization she works for – she is skilled at keeping her higher managers satisfied and away from where they can do harm.

She cannot report these minor crises to them and hope for support. From bitter experience, she knows that their response will be punitive and destructive or create ever more paperwork to manage. She knows that some of the things she has done to create the functional workplace that is the clinic are not entirely in line with policy, even if they have been “unofficially” sanctioned by her managers. Sometimes she has ignored directives from above in order to get the work done – there did not seem to be any penalty.

But the planets do not remain aligned for ever. There are many ways this fragile island can be destroyed.

Perhaps she gets tired, or sick, or just wants to go back to talking with the clients that are the “real” work of the organization. After all those staff who are junior to her are actually earning more money than she is. They get paid for being on call while she fills the gaps gratis as part of her award. They seem to be able to come and go as they please. As a manager she has to do whatever is necessary with no extra pay for all those weekends and nights.

Perhaps her administrator’s partner moves on, transferred by the agency that he works for. Suddenly she finds the endless demands for travel escorts become her issue. It seems that every enquiry at the front desk, every phone call and every complaint which were previously filtered and managed by her office administrator have to be instantly referred to her – no-one else seems willing or able to intervene.

While she tries to have a hand in choosing staff she is overruled in the name of economy – “we cant use that agency – they are too expensive”.

The person who arrives is not someone she would have chosen. Because the clinic is larger than average, town has decided that they can send staff inexperienced in remote health for training. They will need supervision for a period and will of course, not be able to participate in the after hours roster until they are able to make independent decisions about patient treatment. Other staff resent the newcomer for her easy life, her ability to go home and relax at night, her inability to perform basic tasks such as venepuncture or IV cannulation, her penchant for referring patients to others without solving the issues or even exploring the possibility of doing so. The tyrant that is the after hours roster dominates the clinic. The mantra from management in town is that programs such as proactive treatment of Chronic Disease are now “core business”. If only the clinic staff could be diligent enough to see clients in a planned manner then they would not need to be seen for emergencies. Still people seem to turn up until the small hours of the morning with mind numbing regularity – children with fever, old ladies struggling for breath, people with wounds from fights and family violence, psychotic patients, survivors of suicide attempts – the pressure for decisions is unrelenting. And this after a busy day of work – the person on call feels their mind turning to water – perhaps they sense that their decision making is unsafe, as if they had drunk a bottle of wine. They just wish the clients would go away and let them sleep. No pilot or other emergency services worker would be asked to do such shifts.

Eventually this situation can longer be sustained. With the reduced number on call due to the junior staff member other staff decide to leave or take extended holidays. Perhaps someone makes a mistake – a child with fever had a serious infection – not just the flu. Perhaps a serious injury was missed. It falls to the manager to make up the deficits and explain the mistakes to family and administrators.

Or perhaps the attention of town management turns to the clinic – “we have a problem at XXX” Of course the fault is all at the clinic end – it seems that there are no KPIs to measure pay office errors or time to delivery of equipment orders or staff turnover rates, or the number of local indigenous staff employed.

There has been an unexpected death in the community that received unwelcome publicity, exposing the higher management to the glare of media attention.

A man has collapsed – bystanders called 000 and there was an interminable delay before the clinic ambulance arrived. Unlike many communities, it appears that they have political allies in town. The issue has reached the ear of the minister and he is seeking answers from his department. Media have been alerted – they are pressing the minister for details. The manager knows that nothing galvanizes her superiors like a “ministerial”. There have been written reports and a teleconference to discuss the issues. But it seems that the powers that be are not satisfied. A group of senior managers and their support staff arrive by chartered aircraft from town. Anyway, they can use the opportunity to see how the clinic is running and canvass other issues. They are ushered into the manager’s office and the door is closed.

Clinic business is suspended for the day – only “real emergencies” will be seen. One by one, those staff that were involved in the incident enter the room, surrounded by a ring of hostile faces. At the end of the inquisition they emerge looking chastened.

Like a dog that has been disciplined by its master, the senior manager must bite someone more junior in the hierarchy as quickly as possible. He does not see it as his duty to shield his staff from the heat of the media attention and look for constructive solutions to any issues that might exist.

The staff member who first responded to the emergency feels exhausted and humiliated by the experience. The inquisitors did not seem to understand that such emergencies are always fraught affairs, with the outcome determined by harsh statistics – only a tiny fraction of people who have an out of hospital cardiac arrest will survive. The staff member had only been in the community for a few weeks – there were delays in finding the place of the collapse, delays in calling his second on call, vital equipment had been left behind. Still he should have known all these things – did he have any orientation? The ring of eyes now turn to the manager. Among the thousand details that a remote clinician must remember before being able to function in the workplace was the orientation relating to emergencies – did she use the orientation manual? Why did he not know these things?

Soon it is time for the senior managers to fly back to town – they must be there before nightfall. The other issues facing the clinic have been forgotten – they will have to wait for another day. There is little support for the staff member involved – he is left to work through the events of the crisis in his mind, analyzing them over and over. There is no review of the processes and systems which led to the failures which might have made the difference – no thought of the effects of staff turnover, of the impossibility of orientation in the short time allowed. The manager consoles him as best she can – she has seen this scenario before. The staff member takes the next day off work and then decides to cut short his contract – after all he only had a week to go.

Management are conscious that staff turnover is an issue – it is expensive, and has effects on service delivery and morale. They have appointed a new nurse to a long term position to replace an experienced RAN who has just left the community. He had come to the end of his contract. He was well regarded – competent, likeable and with a good connection with those hard to reach young men. He had run the men’s clinic and managed the Mental Health patients, ensuring that they received their regular medication. Without this they were likely to present to the clinic in the middle of the night in a police van, distressed by their demon voices and surrounded by a crowd of anxious family.

He had expressed a wish to stay – why had he not simply been re-employed?

Perhaps it was because he had been sharply critical of management at times, even though he never deviated from official policy in dealing with clients. His partner had also worked in the community and been well regarded. She had published academic work with conclusions that ran counter to current department policy. Apparently he had wanted some variations from the award – more time off to see family. This could not be accommodated according to higher management – it might set a dangerous precedent. So he had simply been allowed to leave – he could not afford to have no work arranged. The manager’s entreaties had fallen on deaf ears – no-one in town had seen fit to negotiate a special arrangement with an effective staff member to maintain continuity. The manager now had to ensure that the Mental Health clients were managed and she had another gap in the after hours roster.

The new staff member has limited experience in Remote work but she has undergone some weeks of orientation in town. Still she would not be able to participate as first on call in the roster for at least a month. Within days of her arrival her furniture is delivered – it seems she intends to make the community her home. The manager was not involved in her recruitment but she comes with glowing references and is apparently very capable.

But soon it seems there are problems – there is interpersonal friction between various staff and the new recruit. The new staff member is well aware of her rights and quite prepared to speak up to enforce them. She is unwilling to deal with children as she has limited experience in this field. Within a few weeks she is taking time off due to various ailments.

The manager moves quickly to rectify the situation – clearly this person is not suitable for remote work. A small team such as hers must have all members working effectively. She confronts the new recruit and voices her concerns. The reaction is predictable – the new recruit feels unfairly treated and threatens to sue. A standoff ensues – the department is involved in mediation between the parties. It is rumoured that she has been involved in a legal fight with a previous employer. Those in town who made the appointment dont see the problem – the clinic is fully staffed after all. The new recruit is sent away for several weeks of training to improve her skills.

The probationary period in her contract passes without action – it seems she will be here for the long term after all.

The manager has decided she can no longer sustain this life and will move on at the end of her contract. She will join the army of temporary health staff paid by agencies to fill the many gaps in the system. She will be able to work seeing clients only – no more arguments with travel, no more headaches over housing, no more dealing with complaints. She wont be in any place long enough to become embroiled in the local politics. Her pay will be managed by the agency – no more arguments with pay office over oncall entitlements.

She was under no illusions that she would change the world when she arrived. Still it is with sadness that she attends the ceremony put on for her by the local people – they dance for her as an honoured member of their community. She reflects how little has changed in spite of her years of work.

She has given three months notice of her intention to quit. But her position is not advertised until some weeks after she has gone. It will take several months to work through the steps involved in employing a replacement. A series of temporary managers are engaged to run the clinic until a more permanent replacement can be found. The merrygoround of faces begins again. The competent staff that were coming back regularly decide that they have better options elsewhere. Local people are resigned to the ups and downs of government services – they have seen it all before.

Eventually a new permanent manager is employed.

She appears much more closely aligned with town than the last one – she regularly communicates with them via phone and email on all sorts of questions. She does not approve of many of the arrangements that the previous manager made to run the clinic. Local staff are not entitled to housing, vehicles are being used for nonclinic purposes, there are too many on call mobile phones. There is disquiet with some of the changes. Medications will no longer be delivered to clients, log books must be kept for vehicle use, detailed job descriptions will be drawn up, people will not be seen after hours unless their condition is serious. The planning meeting that was previously held each morning with a cup of coffee is longer required – the manager will delegate tasks. The recall list generated by the computer record system which was checked through each morning is now largely aspirational and on some days is ignored altogether.

Some local staff have not been seen for weeks – the new manager is not concerned – they are not central to the running of the clinic in any case.

Strangely enough the clinic numbers seem to be down – in particular young men and mothers with children appear not to be attending as they were. But the after hours roster is as busy as ever. In spite of the edict about “big sickness” on a sign at the shop and on the door of the clinic, many of these attendances seem to be for conditions that could have been dealt with during the day. When one nurse asks why she is told that they had come earlier but the wait was too long. She has heard all this before..

And so the clinic enters another phase of its history.

The Containment of Anxiety

In the narrative above, it is an individual manager who creates a functioning clinic against all the odds. It seems at times that the hierarchy above her conspires to destroy what she has created, rather than supporting and recognizing her endeavours.

Isabel Menzies-Lyth was a social psychologist who wrote several papers on the psychology of large organizations. Her various papers were collected in a volume “The Containment of Anxiety in Institutions”. Perhaps the most well known is entitled “Social Systems as a Defence against Anxiety”.(2)

Her original research describes the situation affecting nurse trainees in a large London hospital in the 1960’s. She was engaged by hospital management to find a solution for poor staff morale and a high rate of attrition of trainees.

Nursing students were dropping out of training – often after several years. Many were promising students. Morale was poor in those remaining. Menzies-Lyth was engaged to find out why this was happening. She conducted an extensive series of interviews and concluded that:

The patient journey is distressing to observe – they suffer pain, disability and even death. Nursing tasks can be unpleasant or even repulsive. Relationships formed during a hospital stay are lost as patients are discharged. Strong primitive and often distressing emotions are aroused in staff.

An organizational culture developed to cope with this – this involved collusion, often unconscious, between staff members in creating systems and strategies that gave some immediate relief from these distressing emotions. However these strategies were often dysfunctional and damaging to to the service and its delivery of care in the longer term.

Some of these strategies were:

(1) Depersonalize relationships by constant rotation. Avoid relationships with individual patients – “Everyone looking after all the patients”. Patients were seen as conditions or numbers.

(2) Eliminate Decision making by ritual task performance. Decisions in a clinical context always involve some uncertainty and anxiety as a result. If this decision making can be replaced by a ritualized task, anxiety can be reduced.

(3) Splitting the patient into parts. There is a strong tendency to break the care of an individual into components to be performed by various staff.

(4) Projections – juniors unreliable and untrustworthy – all tasks must be closely managed – detailed protocols must be followed without question. Superiors are invested with qualities like all knowing and reliable.

(5) Decision making process is complex, cumbersome and diffuse with many checks and counterchecks. The end result is that it is difficult to identify who is responsible for a decision and individual responsibility is reduced.

(4) Rotation carried into higher levels – no-one acts in a position for long – they are often seconded to other positions.

When this culture occurs in an organization, it is immutable and largely unconscious – anyone who attempts to challenge it is punished. The end result is that there is no discretion for juniors in any tasks. The Organization is unresponsive to client needs and other problems due to the poorly functioning decision making process.

Those who want to exercise discretion are dissatisfied – these tend to be the more capable. They are not rewarded for their initiative – indeed they may be punished. Hence their only option is to leave. Thus the organization is gradually filled by those who remain and who will tolerate this environment.

Does this model explain the seemingly intractable problems with poorly functioning management in health and perhaps in government bureaucracy in general?

The Health Workforce

Many of the staff in Health bureaucracy have a background in Nursing and many have experience in Remote work.

Remote Health clinics themselves are also run by nurses – doctors work in some of the larger communities, but have only a peripheral role and little authority over the day to day running of a clinic.

The local indigenous workforce has little control over clinic management in Government run clinics. In community controlled organizations a local health board has more control which may mitigate some of the issues discussed here.

The level of local indigenous workforce engagement varies from little or none to being an effective part of the health workforce, depending on local conditions. In times past, clinic services were delivered entirely by local health workers in some places. However due to the complexity of modern health, community expectations, legal issues and government policy, this is now rare.

The Effects of Rapid Staff Turnover

In remote health clinics, frequent staff rotation appears to be tolerated even though there is a stated policy to reduce it. At times it reaches extraordinary levels – some clinics may undergo virtually a complete staff turnover every few months.

This has various effects, mostly deleterious.

It is impossible to provide detailed orientation for a rapidly changing workforce in a complex and challenging environment.

Administrative systems such as pharmacy, stock control, the organization of specialist visits and travel are run usually by nursing staff. As a result of the frequent turnover and difficulties in orientation, these function poorly – this has a significant impact on service delivery.

Clinical effectiveness and indeed safety depends on a good relationship with clients. This is virtually impossible with rapid staff turnover.

In particular, a good working relationship and knowledge of clients is critical to effective programs involving continuity such as the management of chronic disease, child health, and antenatal care. There is good evidence that effective management of these programs reduces emergency attendances, evacuations and hospital admissions.

The rapid turnover of staff is likely to be more expensive. Agency margins are added to the cost of travel and relocation.

Why is this situation tolerated in spite of its adverse effects, increased cost and an express policy to the contrary? Personnel management is essentially a centralized bureaucratic task which is almost never under the control of individual clinics. What is the driver of this in Government organizations?

Is the constant rotation a hangover from hospital nursing training?

Health staffing has always been characterized by constant rotation and change, at least at a junior level. Nurse training and junior medical officer positions in hospitals involve rotations between various placements. These are typically for 3 to 6 months only in each position.

Poor management performance is tolerable for short term agency staff, as long as they get paid and can go away to recover. Agencies absorb the cashflow penalty of errors and disputes over pay and conditions. Nurses working for agencies cite the constant errors by pay office as one of the factors in their decision to leave fulltime employment. This poor performance by bureaucracy is costing the government dearly in increased casual rates.

Because of constant change and turnover, the organization is afflicted by a sort of “corporate dementia” as the knowledge of staff is constantly lost. Reports into remote health practice seem to repeat the same issues. Policies seem to go in cycles.

This corporate dementia worsens the already poor performance of the organization in policy development and decision making. It probably also affects clinical safety. A new staff member with no knowledge of a client is reliant on the Electronic Health Record. But these records are filled with a mountain of irrelevant “noise” and have poorly formatted user interfaces. Important clinical issues may not be detected by a staff member struggling with the complexity of their new role.

Just as clients are not consulted, front line staff are rarely involved in policy development. Rather than fixing the problem at source, solutions to issues often involve short term or labour intensive fixes with further impositions on already overworked frontline clinical staff. This in turn further impacts service quality.

Local people do not have much influence.

In spite of the millions spent on “consultation” there are few if any systematic surveys of the local people’s views on the delivery of health services, much less any action based on them.

People in remote communities have had relatively little political representation, though this is possibly changing in recent elections. It is unusual for potential staff to be vetted by community members.

Staff selection for long term positions appears to be poor – is there an unconscious bias towards those who will not challenge the culture?.

Perhaps more importantly, staff retention appears not to be addressed in any meaningful way. In private enterprise, organizations will always prefer to retain current staff, rather than recruit replacements. They know this is less expensive and results in better company performance even though they may have to pay a premium to retain good staff. In Remote Health, long term employees report that there is no acknowledgement of their service. Capable people are not actively retained. Those who express dissent with current policy may be actively removed as they pose a threat to organizational culture.

Staff turnover appears to be the dominant issue affecting Quality and Safety in the delivery of Remote Health Services. But this does not apply in the part of the organization managing the process – these staff are relatively stable. Government Bureaucracy is not exposed to the rigour of private enterprise and does not measure performance by the generation of profit. The managing workforce is relatively protected by Public Service employment awards.

Conclusion

If Menzies-Lyth’ thesis is true, what are staff in the organization anxious about? Perhaps this organizational culture develops in any large protected organization which is not subject to regular scrutiny. In any case it appears that service delivery quality is not something that drives management decisions. Health systems are in crisis, particularly in Rural and Remote practice. If this is to be addressed, the culture and quality of management must improve.

References

(1) “Kartiya are like Toyotas”

Click to access kartiya_are_like%20_toyotas.pdf

(2) A Case Study in the Functioning of Social Systems as a Defence against Anxiety

Isabel E P Menzies

http://mastor.cl/blog/wp-content/uploads/2017/02/Menzies.-1960.-A-case-study-of-nursing-service-of-a-general-hospital.pdfA Case Study in the functioning of social systems against anxiety