Consent, capacity and the right to say no

Case study

A 74-year-old Sicilian woman was admitted to hospital with stridor and dysphonia in the setting of concurrent upper respiratory tract infection. This was on a background of toxic multinodular goitre that had been treated for 8 years with propylthiouracil, as she had reacted adversely to carbimazole. She had been recommended surgery in the past, but had declined.

Clinical examination revealed an obvious stridor and a diffuse, symmetrically large goitre. Pemberton sign was positive. Thyroid function tests had demonstrated a suppressed thyroid-stimulating hormone level (0.03 mU/L; reference interval [RI], 0.5–4.0 mU/L), with a free thyroxine level within the RI (16.3 pmol/L; RI, 10.0–19.0 pmol/L). Ultrasound and computed tomography imaging identified a large, retrosternal, multinodular goitre. Her trachea was significantly compressed, with a diameter of 5.5 mm (Box). We further recommended total thyroidectomy, which she again politely declined.

The night after admission, her condition deteriorated acutely and she was transferred to the intensive care unit with respiratory distress. The need for intubation was avoided and she was sufficiently managed with nebulised adrenaline and intravenous dexamethasone. Again, she refused surgery.

She remained in intensive care for the following week, with extensive discussion involving her family (two sons) and the help of Italian interpreters. She was seen by multiple doctors, including senior endocrine surgeons, ear, nose and throat surgeons, intensivists and anaesthetists, all of whom attempted to convey to her the need for surgery. It was made clear that without surgery, she would almost certainly die from tracheal obstruction.

The reasons for her refusal were several, but simple. In her native Sicily, a scar on one’s neck — the Sicilian bowtie — references the Mafia practice of throat-slitting and depicts the scar-carrier as dishonourable. She also expressed her fears of the risks of surgery, particularly voice changes from recurrent laryngeal nerve injury and the need for lifelong medication with thyroxine following thyroidectomy. Further, she was convinced that the reason for her stridor was her upper respiratory tract infection rather than tracheal compression, and believed that it would improve with time.

During this time, every practitioner regarded her to be competent to make this decision. She had an unconventional attitude towards life and death and the implications of surgery, and did not appear to have any cognitive impairment affecting her capacity to consent to or refuse intervention.

Because of the gravity and implication of her decision, we sought a neuropsychological assessment to formally document her capacity before discharge. Much to the surprise of all practitioners involved, the assessment deemed the patient incompetent to make her own decisions regarding treatment. She was assessed as having underlying cognitive impairment and impaired aspects of executive function. With regard to decision making, the assessment found that although “she could state the risks and consequences, she was not adequately and rationally weighing these up against the benefits”. We discussed the assessment with a senior neuropsychologist, who agreed with the initial assessment without any need for reassessment.

We sought advice from the hospital’s legal counsel, who recommended that, because the patient was deemed incompetent, the treatment decision should rest with her sons. In addition, the legal counsel considered neuropsychology to be the most expert opinion in competence assessment and, as such, no further assessment was warranted. Although keen for surgery, her sons were also aware of the implications of forcing their mother into an operation that she did not want. They would have to live with her anger or disappointment long after the acute surgical issues had passed.

After about a week of consideration, her sons consented to surgery. The patient was not informed for fear of an angry outburst leading to sudden airway compromise. Given the patient’s potentially difficult airway and her non-compliance, extensive anaesthetic planning ensued. An anaesthetic team of two senior anaesthetists and an anaesthetic nurse took a difficult airway trolley to the ward, where a heavily sedating premedication was administered and the patient was transferred to theatre. Total thyroidectomy was completed without complication, and the patient made a good postoperative recovery. She was grateful for our care and satisfied with the outcome. She was discharged 2 days later with no stridor, normal voice and normal parathyroid function.

Discussion

This case presented challenging and interesting medicolegal and social dilemmas. We were confronted by a patient with a serious, life-threatening but very treatable medical problem, who was refusing treatment. Moreover, all clinicians involved felt that she had capacity to make this decision, yet the neuropsychological assessment showed otherwise.

Legally, “capacity” and “competence” are interchangeable. At common law, adults are always presumed to be competent, unless it can be proved that they lack competence.1 The test at common law for competence is functional; that is, whether they have the ability to make the decision rather than basing it on criteria or “reasonableness”.2 Generally, the law requires that the patient be able to understand and retain treatment information, believe the information, weigh the information and reach a decision, and communicate his or her decision.1

Based on this common law approach, four jurisdictions in Australia (New South Wales, Queensland, Tasmania and Victoria) have enacted legislation which adopts a functional test of competence.1 In Victoria (the location of this case), s 36(2) of the Guardianship and Administration Act 1986 states:

a person is incapable of giving consent to the carrying out of a special procedure or medical or dental treatment if the person —

(a) is incapable of understanding the general nature and effect of the proposed procedure or treatment; or

(b) is incapable of indicating whether or not he or she consents or does not consent to the carrying out of the proposed procedure or treatment.

Despite the apparent clarity of the legislation, the Victorian Office of the Public Advocate recognises that an assessment of competence is not always straightforward and may require input from specialists such as neuropsychologists, psychiatrists and geriatricians.3 Assessment of competence can often be fraught with complexity. Of patients with underlying mild–moderate cognitive impairment, about 60% of patients remain undiagnosed, even by family members.4 Further, a cognitive test such as the Mini-Mental State Examination has flaws — it is culture-specific and does not address individual cognitive domains well. Complicating this further, acute illness and medication impairs patients’ abilities to synthesise information. The law, as a result of these inherent difficulties in establishing competence, does not require any specific test to be passed, but instead leaves the decision to the discretion of the clinician.1

In cases of incompetent patients, treatment decisions are made by a substitute decisionmaker — a guardian, a medical power of attorney or a person responsible (in our case, the patient’s elder son). In arriving at the treatment decision, the substitute decisionmaker has a responsibility to satisfy either one of two legal standards. The best interest standard involves making a decision in what is considered to be the patient’s best interest (often used for children). The substituted judgment standard relates to patients like ours, who have previously voiced their preference for treatment. Under this test, decisionmakers should attempt to reach the same decision that the patient would have reached had they remained competent.4

Our patient had refused surgery for her thyroid for 8 years before her presentation. She was considered to have capacity then and was never thought to warrant neuropsychological assessment earlier. The substituted judgment standard would suggest that her son should have had this in mind when considering the appropriate treatment approach now.

There has been debate in law about whether some decisions require more competence than others. The prevailing view is that “the more serious the risk, the greater the level of evidence of capacity that should be sought”.4 Some patients may be competent to consent to minor procedures like vaccinations but not competent to consent to major surgery. Unfortunately, there is no guide for doctors to evaluate the level of evidence of competence required for any one particular procedure.

What about our situation, where a patient is judged by doctors as having capacity but by a neuropsychologist as not? When should doctors be satisfied with their own evaluation and under what circumstances should a specialist be engaged on the basis that a higher level of evidence of competence needs to be demonstrated? The law would suggest that specialists in competence assessment (eg, neuropsychologists) should be employed when there is doubt and the consequences are severe. In our case, the patient was considered competent by multiple clinicians. It was only because of the risk of death without surgery that our patient underwent a neuropsychological assessment; many saw this as being an unnecessary step, given her apparent competence. Nevertheless, the severe consequences of inaction justified a comprehensive assessment of competence.

This case also highlights the blurred boundary between capacity and rationality. Our neuropsychologist identified a lack of rationality as one of the reasons for our patient’s incompetence. However, our legislated definition of capacity (stated above) only requires that patients understand; it does not require an assessment of what is rational. Regarding rationality, the Stanford encyclopedia of philosophy states that a “theory of decisional capacity must allow for the fact that health care subjects can make unpopular decisions, even ones that are considered highly irrational by others”.5 Patients must be afforded the right to make seemingly irrational decisions, provided they can understand and appreciate the consequences. An analogy could be made to a Jehovah’s Witness refusing a life-saving blood transfusion; highly irrational to many, this choice is honoured by doctors.

In medicine, we regularly see patients who refuse our recommended treatment. Should we be requesting neuropsychological assessment of all patients refusing our recommendations on the basis that they might be “incapable of understanding the general nature and effect of the proposed procedure or treatment”, as set out in the Victorian Guardianship and Administration Act? To what extent can differences in cultural values cloud the question of whether a patient truly understands the treatment?

These sorts of questions create doubt in the process of assessing capacity and put enormous pressure on doctors making assessments. There is conflict between the doctor’s duty to do what he or she considers to be in the patient’s best interests, while also allowing the patient to make decisions that the doctor considers to be “irrational”. Regarding this conflict, however, the law seems to be clear. In a United Kingdom case, the presiding judge stated: “The doctors must not allow their emotional reaction to or strong disagreement with the decision of the patient to cloud their judgment in answering the primary question whether the patient has the mental capacity to make the decision”.6

Despite her initial reluctance, our patient was happy with her postoperative outcome. We feel that our process was robust and that the appropriate decision was made. But there was still significant unease among the team members that we were operating on a patient against her will. And her satisfaction postoperatively should not be misconstrued as proof that we did the right thing. The right thing is to ensure that a patient’s autonomy is maintained and that we do not confuse our own prejudices with patient competency.

We must remember the social implications of our decisions and interventions. It is not acceptable to consider only the medical issues. Our patients all have unique social circumstances, and our treatments can impact heavily upon these. If our patient refused to speak again to her sons as a result of them consenting to surgery that she had refused, could we consider this a successful outcome?

This case has displayed the many complexities inherent in the assessment of a patient’s capacity to consent to or refuse treatments and interventions. Many social, cultural and legal factors may need to be considered. As clinicians, our understanding of some of these subtleties is limited. Legal principles are complicated and often cases need to be considered carefully on individual merits. Resources such as hospital legal counsel, the Office of the Public Advocate or Guardian (depending on the jurisdiction) and medicolegal handbooks are invaluable in ensuring the protection of both the patient and doctor. In the process of writing this article, our research answered several of the legal questions we had encountered — the answers are available to clinicians if we know where to look. Our experience has taught us to employ the services of multiple teams — medical, psychological and legal — and to engage family in the decision-making process.

Computed tomography scan, showing retrosternal goitre with tracheal compression

Australia’s treatment of refugee and asylum seeker children: the views of Australian paediatricians

Many Australian paediatricians have been, and will be, providing care to refugee or asylum seeker children. They come from countries evenly spread among Africa, Asia and the Middle East, and demonstrate a different disease spectrum to Australian children.1 Australia hosts about one refugee per 1000 inhabitants.2 Children are proportionally overrepresented, with around 40% of Australia’s refugee intake being less than 20 years old, similar to the global refugee population.3 These children bring unique medical, cultural, social and linguistic characteristics, and paediatricians need to know how to manage them (Box 1).15

There are scant data on how well paediatricians understand the health and health-related rights of refugees and people seeking asylum. Concerns have been raised that the medical profession’s knowledge is suboptimal.9,16 General practitioners and medical directors have limited knowledge of support services available to them.17 Only one-third of the GPs studied had used a professional interpreter service while managing refugees, while 60% knew that the Translating and Interpreting Service (TIS) is available free of charge.18 However, there are no data for paediatricians.

Refugees and people seeking asylum suffer from physical and mental health problems attributed to experiences in their country of origin, transit countries and Australian detention centres.15,19–21 Refugees and people seeking asylum attempting to access health care services in Australia face geographical, cultural and linguistic barriers.22,23 To best serve children and adolescents, paediatricians need to know about relevant screening practices and Medicare arrangements.24

We sought to determine the knowledge and attitudes of Australian paediatricians in relation to the health of refugee and asylum seeker children both onshore and offshore.

Methods

Questionnaire

To establish the sample for our survey, we began with the Royal Australasian College of Physicians (Paediatrics and Child Health Division) register of paediatricians in Australia and New Zealand. We used the filters “general paediatrician” and “community paediatrician” to select those practitioners most likely to be managing refugee and asylum seeker children. We removed those who were retired or were working overseas (eg, New Zealand). In November 2013, we sent an email to paediatricians on this list with a link to a SurveyMonkey online questionnaire (Appendix 1). We followed up with one reminder email in December 2013 and a final email in January 2014.

Our survey had six sections:

terminology (clinical vignettes about a child’s visa status and legal guardianship);
health care delivery issues (Medicare eligibility, fee waiver programs and interpreters);
visa and screening process (communicable disease screening and transmission risks);
support for Australia’s asylum seeker and refugee policies;
support for Australian Medical Association [AMA] and Royal Australasian College of Physicians [RACP] statements; and
respondent demographics.

We conducted a pilot questionnaire with medical students, who took 5 to 8 minutes to complete the survey, after which the survey was shortened.

Ethics

Ethics approval was granted by the Sydney Children’s Hospitals Network and the University of Sydney (HREC LNR/13/SCHN/266). No incentives were provided to participants.

Data analysis

Data were expressed as the percentage of valid responses for each question. We used IBM SPSS version 21 to compare responses (α = 0.05) by demographic characteristics (all determined a priori) with χ2 analysis, or a two-tailed Fisher exact test whenever there were less than five valid responses.

Results

Target population

There were 599 paediatricians in the RACP register working in “general paediatrics” or “community paediatrics”. After excluding duplicates and those listed as retired or semiretired, overseas or without an email address, 419 paediatricians remained. A further 76 were excluded due to the email bouncing or because they were no longer in practice in Australia, leaving 343 eligible paediatricians (Appendix 2).

Characteristics of respondents

There were 139 respondents (response rate, 40.5%). Respondents’ characteristics were broadly representative of all Australian general paediatricians (Appendix 3). Most of the paediatricians completed all of the questions (90.6%–100% for non-demographic questions).

Questionnaire results

There was no difference in the proportion of respondents who saw refugee and asylum seeker children more than once per month (versus less frequently) in relation to paediatricians’ sex (P = 0.45), training in Australia versus overseas (P = 0.36) or having less than 10 years’ clinical experience versus more (P = 1.00).

Asylum seeker terminology and legal guardian

Ali is a 12-year-old boy from Afghanistan who travelled to Indonesia by plane with his 15-year-old brother, then by boat to Christmas Island. Ali’s brother asked the Department of Immigration and Citizenship (DIAC) for protection from the danger they faced in Afghanistan due to their Hazara ethnicity.

Li is a 10-year-old girl from China who arrived in Australia by plane with her father on a tourist visa. The day after they arrived, Li’s father asked DIAC for protection from the danger they faced in China due to their membership of Falun Gong.

Most respondents correctly classified Ali and Li as “asylum seekers” (Ali, 113/139, 81.3%; Li, 114/139, 82.0%). A small majority correctly identified the Minister for Immigration and Citizenship as Ali’s legal guardian, given that Ali was an unaccompanied minor (83/139, 59.7%).

Medicare eligibility

Fatima is a 17-year-old who has recently fled persecution in Iraq. She comes to see you about a productive cough that has developed over the past few days. She is otherwise well. She informs you that she is not an Australian citizen but she cannot remember what visa she currently holds.

Sixty-five of 134 respondents (48.5%) correctly identified that all refugees hold Medicare cards, but only some categories of asylum seekers are eligible for Medicare. Practitioners who saw refugee or asylum seeker patients “more than once per month” were more likely to select the correct answer than others (15/21, 71.4% v 48/107, 44.9%, P = 0.03). Practitioners with less than 10 years’ experience were just as likely to select the correct answer as those with more experience (8/22, 36.4% v 55/106, 51.9%, P = 0.19).

Fee waiver programs

An intern at a tertiary hospital emergency department calls you about one of your patients, Maya, who has just presented in the final stages of labour. Maya is 17 years old and fled persecution in Fiji. She does not have a Medicare card. The intern asks you whether Maya will be required to pay for all medical costs associated with the admission.

Only 12 of 133 respondents (9.0%) correctly identified that fee waiver programs are available for non-elective services in most Australian states for asylum seeker patients who request treatment at public hospitals but who do not possess a Medicare card.11–13 Practitioners who saw asylum seekers more than once per month had no greater knowledge of these services compared with other respondents (1/21, 4.8% v 10/106, 9.4%, P = 0.69). Over a quarter of respondents (36/133, 27.1%) thought that the hospital administration decided whether to bear an asylum seeker child’s hospital costs.

Interpreters and Medicare

Dhati is a 12-year-old refugee from Nepal who comes to see you with a urinary tract infection. She is accompanied by a friend as she has very limited English.

Similar proportions of respondents would arrange a face-to-face interpreter (59/132, 44.7%) as a telephone interpreter (63/132, 47.7%), with no differences by demographic characteristics (Box 2). Almost half of the respondents who would use a telephone interpreter were not aware of the TIS Doctors Priority Line (29/63, 46.0%).

The vast majority of respondents (118/133, 88.7%) reported no prior knowledge of the Medicare eligibility hotline, but 99 of this group (83.9%) planned to use it in the future. There was no difference between the proportion of respondents who gained their degree in Australia versus overseas who knew of the TIS Doctors Priority Line (54/104, 51.9% v 13/23, 56.5%, P = 0.69) or the Medicare hotline (12/104, 11.5% v 2/23, 8.7%, P = 1.00).

Pre-departure screening

Mr and Mrs Nazif and their four children (Mohammad, 16 years, Sheeva, 14 years, Wasim, 12 years and Fahran, 8 years) fled Afghanistan for Indonesia, where they were granted refugee status by United Nations High Commissioner for Refugees (UNHCR). They are all well and none has any significant past medical history.

Very few respondents were aware which refugee and asylum seeker children would undergo chest x-rays for tuberculosis (TB) screening (11/130, 8.5%) and be tested for HIV (18/129, 14.0%) as part of their initial health screening (Box 3). The most common response was “I don’t know” (chest x-ray, 59/130, 45.4%; HIV, 73/129, 56.6%).

Most respondents (103/128, 80.5%) reported that they thought there was “no” or “low” risk of refugee children transmitting HIV or TB.

Offshore processing and mandatory detention

Only 17/127 (13.4%) of respondents correctly identified that most applicants wait in UNHCR camps for an average of more than 10 years before resettlement to Australia. Most (98/127, 77.2%) responded “1 to 10 years” to this question.

One hundred and one of 126 respondents (80.2%) disapproved or strongly disapproved of offshore processing in Papua New Guinea (PNG) and 103/127 (81.1%) agreed or strongly agreed with the AMA statement that detention of asylum seeker children was a form of child abuse (Box 4).25 Male respondents were more likely to approve of offshore processing than female respondents (13/66 v 0/58, P < 0.001. Ninety of 127 respondents (70.9%) disapproved or strongly disapproved of detention of asylum seeker children (Box 5). There were 25 respondents who “strongly approved” of detention of children. Of these, 23 “strongly agreed” or “agreed” with the proposition in the next question that “detention of asylum seeker children and their families is a form of child abuse”.

One in five respondents left comments, including:

reluctance to use government services for asylum seeker children for fear of adverse consequences on the child’s visa application;
concern about the “long-term damage” and the “high social, medical, psychological and hence economic costs” associated with current policies, in respect of which they were “appalled” and “ashamed”;
“dismay” over the constantly changing nature of refugee and asylum seeker policies (“walking in a mine field when faced with this subject”); and
“ ‘strongly disagree’ was often ‘not strong enough’ ”.

Responses by frequency of contact

Box 6 shows that paediatricians seeing refugee and asylum seeker children more than once per month were more likely than others to know: who had access to Medicare cards (P = 0.03); the Medicare hotline (P = 0.005); and that refugees accepted into Australia had stayed an average of more than 10 years in UNHCR refugee camps (P < 0.001). However, there were no differences in any of the other responses between these groups of paediatricians.

Discussion

This is the first study to investigate the knowledge and attitudes of Australian paediatricians about refugees and asylum seekers. This study also describes how paediatricians across Australia conduct consultations with refugee and asylum seeker children. Most paediatricians surveyed used the correct terminology of “asylum seeker” rather than “boat person” or “illegal immigrant”. However, we found serious gaps in knowledge in relation to Medicare eligibility, whether asylum seekers would be charged for essential health care, and the Medicare priority and TIS hotlines. There was also confusion about children’s screening tests during the visa application process. We found very strong support for the AMA contention that mandatory detention of children was a form of child abuse and overwhelming disagreement with the current policy of immediate removal of asylum seekers to PNG with no prospect of future immigration to Australia.

Two vignettes described the journey taken by Ali (by boat) and Li (by plane) to seek protection in Australia. Following recent policy and legislative changes, pursuant to sections 46A and 46B of the Migration Act 1958 (Cwlth), Ali would currently be classified as an “unauthorised maritime arrival” and would be barred from applying for a protection visa unless the Minister for Immigration and Citizenship (now Minister for Immigration and Border Protection) exercised his non-compellable discretion to lift this restriction.5 The terms “illegal immigrant” and “boat person” are not appropriate as applying for protection in Australia is a legal process provided for by the Migration Act 1958 (Cwlth) and consistent with Australia’s international obligations under the United Nations (UN) 1951 Convention Relating to the Status of Refugees and 1967 Protocol Relating to the Status of Refugees. The children in our vignettes could not properly be classified as “refugees” until their claims for protection were assessed on their merits.5

We found that most paediatricians understood that the Minister is the guardian of an unaccompanied minor.7 The Minister thus detains children while also being their legal guardian (with a duty to act in their best interests). To resolve this conflict of interest, the RACP in a position statement in 2013 called for an independent legal guardian for these children. As most paediatricians considered mandatory detention a form of child abuse, it cannot be in the children’s best interests.

We found gaps in paediatricians’ knowledge about Medicare eligibility. Medicare rights are held by all refugees and by asylum seekers who hold bridging visas to which such rights are attached.4,9 Although respondents who didn’t know the answer could ask colleagues and other contacts, the high percentage of “I don’t know” responses highlights the need for better training and education in this area. This is further complicated by some asylum seekers being supported by International Health and Medical Services (IHMS) and the Red Cross. However, these complexities were beyond the scope of this study.

Poor knowledge of hospital fee-waiver programs could limit access to hospital care and could be obstructed by this perceived cost burden, and health professionals might not be referring asylum seekers as they otherwise would.

Better knowledge of the pre-visa screening process may help to avoid duplications or omissions and thereby minimise financial and time burdens for patients and their paediatricians. This information is available — a copy of pre-departure screening results is given to Settlement Services International by the Department of Immigration and Border Protection on arrival. We are concerned that some health care workers may not know how to access this information and families are not being provided with it to bring to appointments.

Data derived by use of questionnaires are limited by potential responder bias; however, our sample was representative of Australia’s general paediatricians and responses did not differ greatly by demographic characteristics. Question wording and ordering may have resulted in our study underestimating disagreement with current policies. In questions 12 (approval of PNG proposal) and 15 (agreement with AMA statement that mandatory detention is child abuse), we outlined a policy or statement and then asked for approval or disapproval, whereas in question 14 (approval of detention of children), we outlined the RACP position calling for the end of detention for child asylum seekers, and then asked for approval or disapproval of detention of children (rather than of the RACP position). This may explain why almost all those who strongly agreed with detention of children also agreed with the proposition that mandatory detention was a form of child abuse.

Refugee and asylum seeker health care is complex with frequent government policy changes. Nonetheless, our findings show that there is considerable confusion about their legal and health access-related rights and the services currently available to assist in delivering care. As a group, paediatricians strongly oppose the detention of children and forced offshore processing of protection visa claims. Australian health care professionals need better training and education to be able to provide best practice health care to these most vulnerable children.

First, medical practitioners can ensure they have up-to-date knowledge of the health problems common among refugee and asylum seeker patients and develop an awareness of information sources and local services available to support the assessment and care of refugee and asylum seeker patients.

Second, medical practitioners can be important advocates for the rights of the specific children they see. This may include writing to the Minister to request that a child be removed from detention and that families be reunified. If such approaches are unsuccessful, the matter may be referred to the Commonwealth Ombudsman. Doctors may choose to contact their parliamentary representatives expressing support for the AMA, RACP and Australian Human Rights Commission positions on people who are seeking asylum and are in detention.

On 19 August 2014, the Minister for Immigration and Border Protection announced measures to enable children to be released from detention onto bridging visas, but only if they arrived before the arbitrary date of 19 July 2013. At the time of his announcement there were 876 children held in detention, including some in Nauru. All of these children should be released from detention immediately, irrespective of their date of arrival.

1 Practical information for managing asylum seekers and refugees

Terminology

An asylum seeker is a person who is living outside their country of origin and has applied for recognition as a refugee.4
A refugee is a person who is living outside their country of origin and has a well founded fear of persecution for reasons of race, religion, nationality, membership of a particular social group or political opinion.5
An unaccompanied minor is a person aged < 18 years who has arrived in Australia without a natural parent or a relative ≥ 21 years old.6 The Minister for Immigration and Border Protection is likely to be the designated legal guardian of unaccompanied minors.1,7

United Nations High Commissioner for Refugees (UNHCR) camps

Refugees processed offshore have waited, on average, > 10 years in refugee camps run by the UNHCR before resettlement to Australia.1

Medicare eligibility and charging patients

All refugees have Medicare cards and are entitled to health care cards under the same conditions as Australian citizens (some waiting periods are waived).8
Some asylum seekers have Medicare rights attached to their temporary visas.4,9–10
To check a patient’s Medicare eligibility, contact the Medicare enquiry number (132 150, press “1”) or access Health Professional Online Services (http://ww.medicareaustralia.gov.au/hpos).
To check eligibility for the Asylum Seeker Assistance Scheme, contact the Australian Red Cross (02 9229 4111).
A public hospital fee waiver program for asylum seekers without a Medicare card is available in most Australian states and territories (no formal policy found for Northern Territory and Western Australia). In New South Wales, a fee waiver is available for certain public health services including emergency care for acute conditions, some elective surgery, and ambulatory and outpatient care to maintain the health of patients with acute and chronic conditions, and to provide patients with maternity services and mental health services.11–13

Translating services

The Translating and Interpreting Service (TIS) has a Doctors Priority Line for practitioners treating permanent residents (such as refugees) with Medicare-rebatable services. Register online at http://www.tisnational.gov.au/Agencies/Forms-for-agencies/Register-for-a-TIS-National-client-code. For general TIS enquiries, contact 1300 575 847.

Screening

Applicants for a permanent visa in Australia are required to undergo a chest x-ray for tuberculosis screening (those aged ≥ 11 years) and HIV screening (those aged ≥ 15 years or if there is a history of blood transfusions or clinical indications suggesting HIV infection, or that the child’s mother was or is HIV positive).14
For more information on past screening and immunisations for patients in detention, please contact International Health and Medical Services Community Detention Assistance Desk on 1800 689 295 or email cdad@ihms.com.au.

2 Paediatricians’ responses to questionnaire items, by paediatrician demographic characteristics

Sex

Where degree obtained

Clinical experience

Responses

Female (n/N)

Male (n/N)

Australia (n/N)

Overseas (n/N)

< 10 years (n/N)

≥ 10 years (n/N)

Sees refugee children at least every month

11/59

9/66

0.45

19/105

2/23

0.36†

3/22

18/106

1.00†

Described Ali as an asylum seeker (Ali is a 12-year-old boy from Afghanistan arriving by boat with no visa)

53/59

50/66

0.04

88/105

17/23

0.26

19/22

86/106

0.76†

Described Li as an asylum seeker (Li is a 10-year-old girl seeking protection arriving by plane on a tourist visa)

51/59

54/66

0.48

90/105

16/23

0.06

15/22

91/106

0.046

Knew that the Minister for Immigration and Citizenship was Ali’s legal guardian as Ali was only accompanied by his 15-year-old brother

39/59

37/66

0.25

62/105

14/23

0.87

13/22

63/106

0.98

Knew there was a fee waiver for essential hospital-based care

7/59

4/65

0.35†

7/105

4/22

0.10†

2/22

9/105

1.00†

Knew some asylum seekers and all refugees had Medicare cards

32/59

31/66

0.42

48/105

15/23

0.09

8/22

55/106

0.19

Used phone or in-person interpreter when patient did not speak English

57/58

58/65

0.07†

96/103

21/23

0.67†

22/22

95/104

0.36†

Knew about Medicare hotline

8/59

6/65

0.45

12/104

2/23

1.00†

3/22

11/105

0.71†

Knew about Translating and Interpreting Service Doctors Priority Line

36/59

29/65

0.07

54/104

13/23

0.69

12/22

55/105

0.86

Knew who received chest x-rays before arrival

6/59

4/66

0.52†

7/105

3/23

0.38†

2/22

8/106

0.68†

Knew who received HIV screening before arrival

12/59

5/65

0.04

13/105

4/22

0.49†

3/22

14/105

1.00†

Considered that refugee and asylum seeker children posed a low or no risk of disease transmission

50/59

50/65

0.27

85/104

18/23

0.70

20/22

83/105

0.25†

Approved or strongly approved of immediately sending asylum seekers to Papua New Guinea

0/58

13/66

< 0.001†

11/103

3/23

0.72†

4/22

10/104

0.27†

Knew that refugees stayed an average of > 10 years in UNHCR refugee camps before settling in Australia

9/59

8/66

0.61

17/105

0/22

0.04†

4/21

13/106

0.48†

Approved or strongly approved of mandatory detention of children

11/59

24/66

0.03

27/104

8/23

0.39

6/22

29/105

0.97

Agreed or strongly agreed with AMA statement that detention of asylum seeker children was a form of child abuse

50/59

52/66

0.39

85/104

18/23

0.70

15/22

88/105

0.09

AMA = Australian Medical Association. n = no. of paediatricians giving each response. N = no. of paediatricians who answered question. UNHCR = United Nations High Commissioner for Refugees. * 5% significance was determined with χ2 analysis whenever there were more than 5 valid responses, and with a two-tailed Fisher exact test whenever there were less than 5 valid responses. † Less than 5 valid responses.

3 Paediatricians’ knowledge about tuberculosis and HIV screening of refugee and asylum seeker children*†

* Participants were asked to respond with reference to a clinical vignette that described a family of two parents and four children. The family was granted refugee status by the United Nations High Commissioner for Refugees. They are all well and none has any significant past medical history. † Applicants for a permanent visa in Australia are required to undergo a chest x-ray (those aged ≥ 11 years) and HIV screening (those aged ≥ 15 years, or if there is a history of blood transfusions or clinical indications suggesting HIV infection, or the child’s mother was or is HIV positive).14

4 Paediatricians’ responses to Australian Medical Association’s statement that “detention of asylum seeker children and their families is a form of child abuse”25

5 Paediatricians’ approval or disapproval of offshore processing and detention of asylum seeker children

* In July 2013, the Australian Government announced a proposal to send all asylum seekers arriving by boat to Papua New Guinea for processing and that “As of today asylum seekers who come here by boat without a visa will never be settled in Australia”.26 † As at June 2012, over 1000 children were recorded as being held in detention in Australia. The Royal Australasian College of Physicians released a statement in May 2013 entitled “Leading paediatricians call for the immediate end to children in detention”.27

6 Paediatricians’ responses to questionnaire items by how often paediatricians saw refugee and asylum seeker children

Frequency of seeing refugee and asylum seeker children

Responses

At least once per month (n/N)

Less often than once per month (n/N)

Described Ali as an asylum seeker (Ali is a 12-year-old boy from Afghanistan arriving by boat with no visa)

17/21

88/107

1.00†

Described Li as an asylum seeker (Li is a 10-year-old girl seeking protection arriving by plane on a tourist visa)

19/21

87/107

0.53†

Knew that the Minister for Immigration and Citizenship was Ali’s legal guardian as Ali was only accompanied by his 15-year-old brother

12/21

64/107

0.81

Knew there was a fee waiver for essential hospital-based care

1/21

11/118

0.69†

Knew some asylum seekers and all refugees had Medicare cards

15/21

48/107

0.03

Used phone or in-person interpreter when patient did not speak English

20/21

97/105

1.00†

Knew about Medicare hotline

6/21

8/106

0.005

Knew about Translating and Interpreting Service Doctors Priority Line

12/21

55/106

0.66

Knew who received chest x-rays before arrival

4/21

6/107

0.06†

Knew who received HIV screening before arrival

5/21

12/106

0.13

Considered that refugee and asylum seeker children posed a low or no risk of disease transmission

17/21

86/106

1.00†

Approved or strongly approved of immediately sending asylum seekers to Papua New Guinea

1/21

13/105

0.46†

Knew that refugees stayed an average of > 10 years in UNHCR refugee camps before settling in Australia

8/21

9/106

< 0.001

Approved or strongly approved of mandatory detention of children

2/21

33/106

0.06†

Agreed or strongly agreed with AMA statement that detention of asylum seeker children was a form of child abuse

17/21

86/106

1.00†

Ethical challenges for doctors working in immigration detention

The health of asylum seekers in Australia’s immigration detention centres has been the subject of a doctors’ letter of concern and two recent reports.1–3 Here, we present an analysis of the ethical dilemmas faced by health practitioners working in these centres1 and seek to promote a strong and considered policy discussion.

Australia’s Department of Immigration and Border Protection (DIBP) contracts a private health service provider, International Health and Medical Services (IHMS), to provide health care to immigration centre detainees at an Australian standard.4 However, media and other reports from Christmas Island,1 Manus Island2 and Nauru3 have raised serious concerns about the quality of care provided and whether health care professionals have been able to fulfil their professional and ethical obligations to patients in these facilities.1–3

Ethical conflicts and challenges

Doctors working within the immigration detention system may experience conflicting loyalties to their patients, their employer and the DIBP. The Australian Health Practitioner Regulation Agency (AHPRA) code of conduct for doctors recognises the significance of conflicts of interest:

Multiple interests are common. They require identification, careful consideration, appropriate disclosure and accountability. When these interests compromise, or might reasonably be perceived by an independent observer to compromise, the doctor’s primary duty to the patient, doctors must recognise and resolve this conflict in the best interests of the patient.5

The Australian Medical Association (AMA) code of ethics6 also advises how doctors should respond to conflicts of interest and to conditions that are judged to be unacceptable for adequate health care:

Refrain from entering into any contract with a colleague or organisation which may conflict with professional integrity, clinical independence or your primary obligation to the patient.

… ensure that you do not countenance, condone or participate in the practice of torture or other forms of cruel, inhuman, or degrading procedures …6

The AMA statement on medical professionalism7 further describes how a doctor’s ability to deliver patient-centred care may be compromised by an employer or government and advises that:

When responding to these challenges, the medical profession and its individual members have a duty to advocate that the health care environment remains patient-centred at all times and a responsibility to ensure that the health needs of patients remains the doctor’s primary duty.7

Despite its obligations to both its patients and the DIBP, IHMS has publicly maintained that no conflict of interest exists.8 However, the inadequate health screenings of asylum seekers on Christmas Island in 2013 demonstrate this type of conflict. In response to DIBP targets, health assessments were rushed, fewer investigations were performed and asylum seekers were transferred to regional processing centres within 48 hours, before results of investigations were available.1 This resulted in failure to identify acute and chronic illnesses before patients were transferred to sites with limited medical facilities.1 This practice continued in the face of objections from the Royal Australasian College of Physicians.1

Some tasks requested of doctors in immigration detention centres are inappropriate in the context of health care, such as requests to refer patients for age assessment by the DIBP. This process is not a part of the patients’ health care and is not in their best interests.1,9 Doctors have been required to prescribe medication en masse to expedite transfer to regional processing centres, with no patient consultation and despite potential contraindications.1 For example, the combination drug for malaria prophylaxis, atovaquone–proguanil hydrochloride, was prescribed without any individual patient consultation, and it was not clear if asylum seekers were informed about the indications for and possible adverse reactions to this drug.

Degrading, harmful and inappropriate incidents have occurred, including requiring asylum seekers to undergo health assessments while exhausted, dehydrated and filthy, with clothing soiled by urine and faeces; addressing individuals by number instead of name;1,2 artificial delays in transfer of patients for tertiary care;1 confiscation and destruction of medications, medical records and medical devices;1 and detention of children despite clear evidence of significant harm.1,9–11

These rushed and inappropriate practices can have harmful consequences for patient wellbeing. These have included the loss of an unaccompanied child’s hearing aid, which was not replaced, and the child went on to develop self-harming behaviour; and the abrupt cessation of anticonvulsants in a child, resulting in worsening of seizures.1 0,11 Tragically, delays in transfer are likely to have contributed to the recent death of an asylum seeker from sepsis, resulting from a cut to his foot.12

Responding to conditions of practice in immigration detention centres

Doctors who work in detention centres may feel an ethical responsibility to voice their concerns, but this may conflict with their obligations to their employer. The question should be asked: is working within immigration detention an ethically tenable prospect for Australian doctors and other health professionals? Several answers present themselves.

First, a doctor may advance the “no worse off” argument — that any individuals refusing to work within the system will be replaced by others willing to do so.

Second, it might be argued that it is better to have a compassionate person delivering the best care possible within the constraints of the detention system than to have that person leave, not knowing who the replacement will be. However, remaining silent goes against the imperative to advocate for patients’ interests.7

Third, a doctor might work as contracted in the system, yet still advocate for asylum seekers by speaking out about deficiencies in their care. But it is unclear how much “advocacy from within” is enough. If that advocacy becomes ineffective, is there a point at which the doctor becomes effectively complicit with the system?

Finally, some doctors terminate their contracts when they see the realities of the detention health care environment. However, while this strategy preserves the individual’s professional integrity, it may jeopardise patient care by resulting in an immediate workforce shortage.

The work culture in immigration detention centres discourages open expression of personal concerns by staff, with documented cases ending in dismissal.13 Formal complaints can be made but have rarely effected change.1 The diffusion of personal responsibility associated with reporting complaints to senior staff is a powerful factor in the immigration detention system. Health practitioners who lodge complaints to formalise their objections may judge this to have met their responsibilities. However, in reality, this may not represent effective advocacy for patients when failure to act on complaints is a systemic problem. Other doctors, increasingly frustrated with the lack of progress, may burn out and abandon their advocacy attempts. In our experience, many resolve to wait out their contracts and leave, never to return.

Appealing to bodies external to their employer becomes a last resort. However, individuals who do so face the possibility of legal action for breaching confidentiality agreements. Health care professionals can notify AHPRA, which provides protection from such agreements, but AHPRA’s scope is limited to the conduct of individual practitioners rather than dysfunctional health systems as a whole.14 There is little else individuals can do without significant personal risk.

Is it time for a boycott?

Given reports that the health care currently provided to asylum seekers in immigration detention may be both substandard and harmful, a coordinated response to the problem is now needed to ensure change occurs.

Should health care professionals consider boycotting the provision of services in immigration detention until conditions are made satisfactory? The potential role of a professional boycott to motivate change should be openly discussed. Any decision made requires leadership from the professional bodies responsible for ensuring standards of care and ethical conduct. Any resulting policy and advice in relation to health care within immigration detention needs to be clear.

We call on the colleges and the AMA to lobby for effective change, so that asylum seekers receive appropriate care and those delivering it are not professionally compromised. We also call for robust, independent and transparent monitoring of standards within immigration detention, and a system to register and independently deal with complaints.

Mandatory reports of concerns about the health, performance and conduct of health practitioners

Health practitioners are often well placed to identify colleagues who pose risks to patients, but they have traditionally been reluctant to do so.1–4 Since 2010, laws in all Australian states and territories require health practitioners to report all “notifiable conduct” that comes to their attention to the Australian Health Practitioner Regulation Agency (AHPRA).

Legal regimes in other countries, including New Zealand,5 the United States3,6 and Canada,7 mandate reports about impaired peers in certain circumstances. However, Australia’s mandatory reporting law is unusually far-reaching. It applies to peers and treating practitioners, as well as employers and education providers, across 14 health professions. Notifiable conduct is defined broadly to cover practising while intoxicated, sexual misconduct, or placing the public at risk through impairment or a departure from accepted standards. Key elements of the law are shown in Box 1.

Mandatory reporting has sparked controversy and debate among clinicians, professional bodies and patient safety advocates. Supporters believe that it facilitates the identification of dangerous practitioners, communicates a clear message that patient safety comes first,8 encourages employers and clinicians to address poor performance, and improves surveillance of threats to patient safety. Critics charge that mandatory reporting fosters a culture of fear,9 deters help-seeking,10 and fuels professional rivalries and vexatious reporting.11,12 Concerns have also been raised about the subjectivity of reporting criteria.13 The Australian Medical Association opposed the introduction of the mandatory reporting regime for medical practitioners, citing several of these objections.14

Little evidence is available to evaluate the veracity of these different views. We sought to provide baseline information on how the regime is working by analysing an early sample of mandatory notifications. Specifically, we aimed to determine how frequently notifications are made, by and against which types of practitioners, and about what types of behaviour.

Methods

We conducted a retrospective review and multivariate analysis of all allegations of notifiable conduct involving health practitioners received by AHPRA between 1 November 2011 and 31 December 2012. The Human Research Ethics Committee at the University of Melbourne approved the study.

Data sources

We obtained data from two AHPRA sources: mandatory notification forms and the national register of health practitioners.

AHPRA receives notifications on a prescribed form. Notifiers may access the form on AHPRA’s website or by calling a notifications officer on a toll-free number. Two of us (M M B, D M S) helped AHPRA develop the form in 2011. It includes over 40 data fields; most fields have closed-ended categorical responses, but there is also space for free-text descriptions of concerns. Notifiers may append supporting documentation such as medical records and witness statements.

We obtained PDF copies of all notification forms received in five states and two territories between 1 November 2011 and 31 December 2012. Reports from New South Wales were not included. Although health practitioners in NSW are subject to the same reporting requirements as those in other states, AHPRA has a more limited role in relation to notifications made in NSW: when AHPRA receives such notifications, they are referred to the NSW Health Care Complaints Commission to be handled as complaints. AHPRA cannot log and track these notifications in the same way as it can notifications arising in other jurisdictions.

Data collection

We collected data onsite at AHPRA’s headquarters in Melbourne from April 2013 to June 2013. Three reviewers were trained in the layout and content of the notification forms, the variables of interest, methods for searching the health practitioner register, and confidentiality procedures. For each form lodged during the study period, the reviewers extracted variables describing the statutory grounds for notification, type of concern at issue, and characteristics of the practitioner who made the notification (“notifier”) and the reported practitioner (“respondent”). We also coded a variable classifying the relationship of the notifier to the respondent (treating practitioner, fellow practitioner, employer, education provider). Practitioner-level variables extracted from the notification forms were cross-checked with information recorded on the register.

One of AHPRA’s core functions is to maintain a national register of licensed health practitioners. To enable calculations of notification rates, AHPRA provided a de-identified practitioner-level extract of the register as at 1 June 2013. The extract consisted of variables indicating practitioners’ sex, age and profession, and the postcode and state or territory of their registered practice address. Practitioners from NSW and those with student registration were excluded to ensure that the register data matched the sample of notifications. Postcodes were converted to a practice location variable with three categories (major cities, inner and outer regional areas, and remote and very remote areas), based on the Australian Statistical Geography Standard.15

Analyses

We calculated counts and proportions for characteristics of notifications, notifiers and respondents. We also calculated frequency of notification according to the professions of the notifiers and respondents, respectively.

We used multivariable negative binomial regression to calculate incidence of notifications by five respondent characteristics: profession, sex, age, state or territory, and practice location. Incidence measures reported for each characteristic were adjusted for the size of the underlying population and all other observed characteristics. Details of the calculation method and regression results are provided in the Appendix.

All analyses were done using Stata 13.1 (StataCorp).

Results

AHPRA received 850 mandatory notifications during the study period. After excluding notifications relating to nine practitioners from NSW and 22 students, our sample consisted of 819 notifications. The median time between the alleged behaviour and its notification to AHPRA was 18 days (interquartile range, 5 to 58 days).

Grounds and conduct

The distribution of notifications by statutory ground and type of concern, with examples, is shown in Box 2. This information was available for 811 of the 819 notifications. Sixty-two per cent were made on the grounds that the practitioner had placed the public at risk of harm through a significant departure from accepted professional standards; 17% alleged that the practitioner had an impairment that placed the public at risk of substantial harm (more than half of these related to mental health); 13% alleged that the respondent had practised while intoxicated; and 8% related to sexual misconduct (most commonly a sexual relationship between the practitioner and a patient).

Characteristics of notifiers and respondents

The characteristics of notifiers and respondents are shown in Box 3. Nurses and doctors dominated notifications, with 89% of all notifications (727/819) involving a doctor or nurse in the role of notifier and/or respondent. Nurses and midwives accounted for 51% of notifiers and 59% of respondents. Doctors accounted for 29% of notifiers and 26% of respondents.

Men constituted 37% of notifiers and 44% of respondents. Eighty per cent of notifications were about practitioners in three jurisdictions: Queensland (39% [321/819]), South Australia (22% [184/819]), and Victoria (18% [150/819]).

Nexus between notifiers, respondents and conduct

Among the 731 notifications for which it was possible to identify the professional relationship between the notifier and the respondent, 46% were made by fellow health practitioners (ie, health professionals other than the respondents’ treating practitioners) (Box 3). Forty-six per cent of notifications were made by the respondents’ employers; this included cases in which the notifier was also a registered health practitioner (eg, medical director of a hospital) but the notification was made in an employer rather than individual capacity.

Among 736 notifications for which it was possible to tell how the respondent’s behaviour came to the attention of the notifier, the conduct was directly observed by the notifier in about a quarter of cases (201/736). In more than half of notifications (376/736), the conduct at issue came to the notifier’s attention through a third party — the patient, a colleague or some other person. For the remainder, the conduct was either identified through an investigatory process such as a record review, clinical audit, or police or coronial investigation (81/736) or self-disclosed by the respondent (78/736).

Intraprofessional and interprofessional notifications

Among 697 notifications for which it was possible to determine the profession of the notifier and the respondent, the profession of the notifier and respondent was the same in 80% of cases (557/697). This concentration of intraprofessional notifications is depicted in Box 4 by the diagonal line of relatively large bubbles running from the bottom left to the top right of the figure. Nurse-on-nurse notifications (those involving nurses and/or midwives) and doctor-on-doctor notifications accounted for 73% (507/697) of notifications.

Interprofessional notifications mostly involved doctors notifying about nurses (7% [51/697]) and nurses notifying about doctors (3% [20/697]). The remainder were widely distributed across other interprofessional dyads.

Incidence of notifications

The unadjusted incidence of mandatory reporting was 18.3 reports per 10 000 practitioners per year (95% CI, 17.0 to 19.6 reports per 10 000 practitioners per year). Adjusted rates of notification for the five respondent characteristics analysed are shown in Box 5. Psychologists had the highest rate of notifications, followed by medical practitioners, and then nurses and midwives (47.4, 41.1 and 39.7 reports per 10 000 practitioners per year, respectively).

The incidence of notifications against men was more than two-and-a-half times that for notifications against women (45.5 v 16.8 reports per 10 000 practitioners per year; P < 0.001). Health practitioners working in remote and very remote areas had a much higher incidence of notification than those in major cities and regional areas (60.1 v 17.4 and 25.5 reports per 10 000 practitioners per year). There were also large differences in incidence of notifications across jurisdictions, ranging from 61.6 per 10 000 practitioners per year in South Australia to 13.1 per 10 000 practitioners per year in the Northern Territory.

Discussion

We found that perceived departures from accepted professional standards, especially in relation to clinical care, accounted for nearly two-thirds of reports of notifiable conduct received by AHPRA during the study period. Nurses and doctors were involved in 89% of notifications, as notifiers, respondents or both. Interprofessional reports were uncommon. We observed wide variation in reporting rates by jurisdiction, sex and profession — for example, a nearly fivefold difference across states and territories, and a two-and-a-half times higher rate for men than for women.

Our results suggest that some of the harms predicted by critics of mandatory reporting and some of the benefits touted by supporters are, so far, wide of the mark. Concerns that mandatory reporting would be used as a weapon in interprofessional conflict should be eased by the finding that the notifier and respondent were in the same profession in four out of five cases. Indeed, the low rate of notifications by nurses about doctors (3%) gives rise to the opposite concern. Although nurses are often well placed to observe poorly performing doctors, our data suggest that the new law has not overcome previously identified factors that may make it difficult for nurses to report concerns about doctors.2

On the other hand, supporters of mandatory reporting who heralded it as a valuable new surveillance system may be concerned by the low rates of reporting in some jurisdictions. Part of the variation in incidence of notifications across jurisdictions that we observed might reflect true differences in incidence of notifiable events, but it is also likely that differences in awareness of reporting requirements and differences in notification behaviour contribute to the variation. US research suggests that underreporting of concerns about colleagues is widespread, even when mandatory reporting laws are in place.3 The identified barriers to reporting fall primarily into four categories: uncertainty or unfamiliarity regarding the legal requirement to report; fear of retaliation; lack of confidence that appropriate action would be taken; and loyalty to colleagues that supports a culture of “gaze aversion”.2,3,16–18 Action to better understand and overcome these barriers could be aimed at jurisdictions with the lowest reporting rates.

The higher rate of notification for men that we observed is consistent with previous research showing that male doctors are at higher risk of patient complaints,19,20 disciplinary proceedings21 and malpractice litigation.22 While systematic differences in specialty and the number of patient encounters may explain some of the heightened risk observed for men, other factors, such as sex differences in communication style and risk-taking behaviour,23,24 are probably also in play.

The main strength of our study is that we included data from every registered health profession and all but one jurisdiction. The ability to access multistate data for research and evaluation purposes is an important benefit of Australia’s new national regulation scheme, and would not have been possible 5 years ago. Other federalised countries with siloed regulatory regimes continue to struggle with fragmented workforce data.

Our study has three main limitations. First, because mandatory reporting was implemented in concert with other far-reaching changes to the regulation of health practitioners, it was not possible to compare the incidence of notifications before and after the introduction of the new law. Second, it was not feasible to include information on the outcomes of notifications: too small a proportion of notifications had reached a final determination at the time of our study to provide unbiased data. As the scheme matures, it would be useful to explore what proportion of reports were substantiated and resulted in action to prevent patient harm, at an individual or system level. Third, our analysis did not include notifications against practitioners based in NSW.

This study is best understood as a first step in establishing an evidence base for understanding the operations and merits of Australia’s mandatory reporting regime. The scheme is in its infancy and reporting behaviour may change as health practitioners gain greater awareness and understanding of their obligations. Several potential pitfalls and promises of the scheme remain to be investigated — for example, the extent to which mandatory reporting stimulated a willingness to deal with legitimate concerns, as opposed to inducing an unproductive culture of fear, blame and vexatious reporting. Qualitative research, including detailed file reviews and interviews with health practitioners and doctors’ health advisory services, would help address these questions. Further research should also seek to understand the relationship between mandatory reports and other mechanisms for identifying practitioners, such as patient complaints, incident reports, clinical audit, and other quality assurance mechanisms.

1 Elements of mandatory reporting law for health practitioners in Australia

Who can be subject to a report?

All registered health practitioners in Australia (doctors, nurses, dentists and practitioners from 11 allied health professions)*

Who has an obligation to report?

Employers, education providers and health practitioners†

What types of conduct trigger the duty to report?

The practitioner: (a) practised the profession while intoxicated by alcohol or drugs, (b) engaged in sexual misconduct in connection with the practice of the profession, (c) placed the public at risk of substantial harm in the practice of the profession because of an impairment, or (d) placed the public at risk of harm by practising in a way that constitutes a significant departure from accepted professional standards

What is the threshold for reporting?

Reasonable belief that notifiable conduct has occurred

What protections are available to the notifier?

A reporter who makes a notification in good faith is not liable civilly, criminally, in defamation or under an administrative process for giving the information

What are the penalties for failing to report?

Individuals may be subject to health, conduct or performance action; employers may be subject to a report to the Minister for Health, a health complaints entity, licensing authority and/or other appropriate entity; education providers may be publicly named by the Australian Health Practitioner Regulation Agency (AHPRA)

* Registered students are subject to mandatory reporting if they place the public at risk of substantial harm because of an impairment, or are subject to certain criminal charges or convictions. † Health practitioners are exempt from the obligation to report if they reasonably believe that AHPRA has already been notified of the conduct, or if they become aware of the conduct in the course of legal proceedings, professional indemnity insurance advice or approved quality assurance activities. Treating practitioners are exempt from the obligation to report in Western Australia only.

2 Statutory grounds for notification and types of concerns at issue (n = 811)*

Statutory ground and type of concern

No. (%)

Example of alleged behaviour

Departure from standards

501 (62%)

Clinical care

336 (41%)

An optometrist failed to refer a child with constant esotropia to an ophthalmologist for 2 years, resulting in permanent visual impairment

Professional conduct

107 (13%)

A director of nursing engaged in bullying and intimidation, including rude and abusive outbursts towards nurses

Breach of scope or conditions

50 (6%)

An occupational therapist with conditional registration did not comply with a requirement that she work under supervision

Impairment

140 (17%)

Mental health

75 (9%)

A nurse with a history of bipolar disorder began to behave erratically and engaged in loud confrontations with patients

Cognitive or physical health

31 (4%)

A midwife suffered a head injury in a car accident and subsequently experienced cognitive deficits, including difficulty with maths calculations

Substance misuse

25 (3%)

An anaesthetist self-prescribed medication for anxiety and insomnia and developed a benzodiazepine dependency

Intoxication

103 (13%)

Drugs

61 (8%)

A nurse working in a hospital had an altered level of consciousness; empty morphine ampoules and syringes were found in her pocket

Alcohol

42 (5%)

A surgeon was noted to smell of alcohol and to have slow reactions during surgery; a breath alcohol test was used to confirm that he was intoxicated

Sexual misconduct

67 (8%)

Sexual relationship between practitioner and patient

31 (4%)

A psychologist began a personal relationship with her patient after the breakdown of his marriage and asked him to move in with her

Sexual contact or offence

28 (3%)

A male nurse in an aged care facility sexually assaulted an elderly female patient who was immobile after a stroke

Sexual comments or gestures

8 (1%)

A pharmacist asked a patient to lunch and when she refused he posted sexual comments and pornographic images on her Facebook page

* Statutory grounds were unknown for eight cases. Type of concern was missing for a further eight reports relating to departure from standards and nine relating to impairment.

3 Characteristics of notifiers and respondents*

	Number (%)
Characteristic	Notifiers	Respondents

Profession	n = 754	n = 816
Nurse and/or midwife	387 (51%)	482 (59%)
Medical practitioner	220 (29%)	216 (26%)
Psychologist	38 (5%)	48 (6%)
Pharmacist	29 (4%)	33 (4%)
Dentist	7 (1%)	15 (2%)
Other health practitioner	16 (2%)	22 (3%)
Non-health practitioner	57 (8%)	—
Age	n = 750	n = 750
< 25 years	4 (1%)	16 (2%)
25 to 34 years	69 (9%)	111 (15%)
35 to 44 years	159 (21%)	204 (27%)
45 to 54 years	281 (37%)	227 (30%)
55 to 64 years	219 (29%)	145 (19%)
≥ 65 years	18 (2%)	47 (6%)
Sex	n = 791	n = 816
Female	498 (63%)	460 (56%)
Male	293 (37%)	356 (44%)
Relationship to respondent	n = 731	—
Fellow health practitioner	335 (46%)	—
Employer	333 (46%)	—
Treating practitioner	58 (8%)	—
Education provider	5 (1%)	—
Practice location	—	n = 809
Major cities	—	535 (66%)
Inner or outer regional	—	229 (28%)
Remote or very remote	—	45 (6%)
Jurisdiction of practice		n = 819
Queensland	—	321 (39%)
South Australia	—	184 (22%)
Victoria	—	150 (18%)
Tasmania	—	25 (3%)
Western Australia	—	97 (12%)
Northern Territory	—	11 (1%)
Australian Capital Territory	—	31 (4%)

* Differences in n values are because of missing data.

4 Frequency of notifications, by profession of notifiers and respondents (n = 697)*

* Bubble sizes correspond to numbers of notifications in each of the 25 dyads shown.

5 Incidence of notifications per 10 000 registered practitioners per year, by characteristics of respondents*

* Rates are adjusted for all variables reported in the figure; dashed line indicates overall unadjusted incidence.

The Australian’s dissembling campaign on tobacco plain packaging

As plain packaging bites into smoking, The Australian newspaper relentlessly attacks the legislation

This year marks two 50th anniversaries — the first United States Surgeon General’s report on smoking and health1 and the establishment of The Australian newspaper.

Fifty years on, there is literally universal acceptance of the massive harms caused by smoking — 178 governments have signed the World Health Organization’s Framework Convention on Tobacco Control — but smoking still causes 6 million deaths each year. Given the preventability of the problem, action has been distressingly slow, largely because of the power and ruthless opposition of the global tobacco industry.

Expert reports have noted over the years that there is no magic bullet: a comprehensive approach including legislation and education is needed. In December 2012, legislation came into force in Australia mandating plain packaging of tobacco products, despite ferocious opposition from tobacco interests. This was recommended by the National Preventative Health Taskforce as part of a comprehensive approach, and Health Minister Nicola Roxon was explicit about the main aim: “we’re targeting people who have not yet started, and that’s the key to this plain packaging announcement — to make sure we make it less attractive for people to experiment with tobacco in the first place”.2

Eighteen months later, The Australian ran a front-page story headed “Evidence ‘world’s toughest anti-smoking laws’ not working: Labor’s plain packaging fails as cigarette sales rise”. This was based on a tobacco industry report, still unpublished, claiming a 0.3% increase in tobacco sales volume during 2013. The Australian‘s campaign against plain packaging continued with (thus far) 14 articles, including three front pages and three editorials attacking plain packaging and its advocates, and even defending the tobacco industry’s right to advertise.

The Australian failed to declare a lengthy past association between News Limited and the Philip Morris tobacco company (Rupert Murdoch was on Philip Morris’s board from 1989 to 1998), or that some of its journalists and commentators on the issue have associations with the tobacco industry-funded Institute of Public Affairs,3–5 including the author of the original article, who also has a history of attacking the “nanny state”6 and “health fascists”.7

The industry’s report remains secret, but Treasury has since published authoritative data showing that “tobacco clearances (including excise and customs duty) fell by 3.4% in 2013 relative to 2012”;8 according to the Australian Bureau of Statistics “total consumption of tobacco and cigarettes in the March quarter 2014 is the lowest ever recorded”;8 and newly released National Drug Strategy Household Survey results show that between 2010 and 2013, daily smoking rates among people aged 14 years and over “declined significantly” from 15.1% to 12.8% (Box); the average number of cigarettes smoked weekly by smokers fell from 111 to 96; and the average age of starting to smoke has increased to 15.9 years.9

Australia is a small market, but plain packaging has massive global implications for an industry desperate to maintain its capacity to promote and glamorise its products. The history of tobacco control shows that when one country implements a measure previously thought difficult, others speedily follow. Governments committed to introducing plain packaging already include New Zealand, the United Kingdom, Ireland and possibly France. The British debate is currently at a crucial phase. Legislation there would be a massive blow for Big Tobacco, not only because it is a much larger market than Australia, but because many countries still look to the UK as an exemplar in areas such as this.

The Australian‘s misleading reports are unlikely to achieve much in Australia, where there is long standing bipartisan support for plain packaging and comprehensive approaches to tobacco control. Other media have provided accurate and unbiased coverage on this issue, as well as the reality that all the tobacco industry’s predictions about disastrous consequences from plain packaging have failed to eventuate.

But The Australian‘s reports have — as their authors must have expected — attracted attention overseas. UK headlines include “Plain packaging has backfired in Australia — don’t bring it to the UK”, “Australia tobacco sales increase despite plain packaging”, “Plain packaging can increase smoking. That’s the power of branding”, “Plain cigarette packaging hasn’t worked in Australia and it won’t work in Britain”. Tobacco companies and their allies have assiduously promoted a similar line — for example, the Institute of Economic Affairs (a tobacco industry-funded group, like Australia’s Institute of Public Affairs10) asserts that “with tobacco sales rising after plain packaging was introduced in Australia, the public health case for this policy looks increasingly weak”.11

What can we conclude from this? Plain packaging passes the tobacco “scream test” — the more the industry screams, the more impact we know a measure will have. There is nothing new about deception and distortion from tobacco companies: this has been their practice for six decades. Fifty years on from the landmark Surgeon General’s report, it is disappointing that a newspaper such as The Australian provides support for such approaches. Health campaigners should continue to promote measures that will benefit the community, especially children, even if opposed by powerful commercial interests, and to take pride in Australia’s capacity to lead the world.

Proportion of Australians aged 14 years and over smoking daily, from the National Drug Strategy Household Survey 1991 to 20139

The Australian’s dissembling campaign on tobacco plain packaging

As plain packaging bites into smoking, The Australian newspaper relentlessly attacks the legislation

This year marks two 50th anniversaries — the first United States Surgeon General’s report on smoking and health1 and the establishment of The Australian newspaper.

Proportion of Australians aged 14 years and over smoking daily, from the National Drug Strategy Household Survey 1991 to 20139

Racism, health and constitutional recognition

Constitutional recognition is the next step to building a healthier nation, says the Australian Indigenous Doctors’ Association

The impacts of racism are significant,1 they matter, and racism is rightfully acknowledged as a determinant of health for Indigenous populations worldwide.2 Recent research shows that experiences of racism and discrimination remain prevalent in Australia, through race-hate talk, race-based exclusion and physical attack.3 Correspondingly, there is evidence associating racism with poor outcomes in contemporary and historical contexts, via colonisation and oppression.4

From before birth, we are connected to family, community, culture and place. These interactions continue through life to form relationships which are crucial to belonging and to the construction of identity. This includes relationships with people and place, such as the actions and responses of others. Knowing about your own history and culture elucidates contemporary cultural ways of being, by providing a connection to the knowledge of ancestors. These connections are viewed as protective factors and contribute to building a strong sense of self and identity.5

Protective factors are inextricably linked to health and wellbeing, making the protection and promotion of culture critical to improvements in Aboriginal and Torres Strait Islander health. For Aboriginal and Torres Strait Islander people, our culture is a source of strength, resilience, happiness, identity and confidence. This philosophy embeds the importance of cultural safety into our daily practice. We do this because we know Aboriginal and Torres Strait Islander people are more likely to access, and will experience better outcomes from, services that are respectful and culturally safe.6

Thus, a focus of the work of the Australian Indigenous Doctors’ Association (AIDA) is promoting culturally safe learning environments for Indigenous doctors and medical students, and culturally safe service delivery to Indigenous patients. Cultural safety is about overcoming the cultural power imbalances of places, people and policies to contribute to improvements in Aboriginal and Torres Strait Islander health.7

We work within a strengths-based framework because conveying positive messages has the potential to make a significant contribution to changing public perceptions and attitudes.8 The media is, however, not bound to report in this way; it often focuses on stories of deficit. This type of reporting can fuel racist attitudes.8

Negative framing in the media weighs into current debates about the Racial Discrimination Act 1975 (Cwlth)9 and the debate about amending Australia’s constitution to recognise Aboriginal and Torres Strait Islander peoples as the First Australians.10 AIDA continues to support the maintenance of robust antiracial vilification laws as a necessary mechanism contributing to shape a health system that is culturally safe and respectful to all who access it.

Constitutional recognition is the next step in developing a healthier nation. Recognising Indigenous Australians as the First Nations peoples will enrich the identity of the nation and make significant steps towards reconciling past injustices. The current Constitution still provides a head of power that permits the Commonwealth Parliament to make laws that discriminate on the basis of race.10 The previous occasion on which protections under the Racial Discrimination Act were suspended was when activities were being implemented under the Northern Territory Emergency Response. At the time, AIDA advocated for the reinstatement of Section 9 of the Racial Discrimination Act, owing to the negative impacts that the suspension placed on the health and wellbeing of Aboriginal and Torres Strait Islander people in the Northern Territory.11 Recognising our rightful place as First Nations people in the constitution lays a strong foundation for the health, wellbeing and unity of all Australians. While it will not wash away the grave injustices of the past, with such recognition there is capacity to heal the deep wounds that affect health outcomes and continue to weigh heavily on Australia as a nation.

The medical community has a role to play in promoting Aboriginal and Torres Strait Islander recognition in the constitution. AIDA, as the peak body for Aboriginal and Torres Strait Islander doctors and medical students, will work with its peers in the medical community, as well as more broadly, to support this constitutional reform to achieve the sustainable, unifying and positive benefits that are envisaged for all Australians.

Indigenous health: radical hope or groundhog day?

Professor Ernest Hunter explains why learning from the past and investing strategically will have the best chance of success

In his book Radical hope: education and equality in Australia, Aboriginal lawyer, academic and land rights activist Noel Pearson contends:

Governments and their bureaucracies are informed by everything other than memory of what was done five years ago, ten years ago and eighteen years ago. Politics are remembered, policies are not.1

It also includes his 2004 Judith Wright Memorial Lecture, in which, reflecting on the political forces necessary to drive national change in Indigenous affairs, he notes:

it will take a prime minister in the mould of Tony Abbott to lead the nation to settle the “unfinished business” between settler Australians and the other people who are members of this nation: the Indigenous people.1

A decade on, Tony Abbott, as Prime Minister, delivered the Closing the Gap report.2 Having identified that his government’s new engagements will involve centralising responsibility for Commonwealth-funded programs in the Department of the Prime Minister and Cabinet, setting up the Prime Minister’s Indigenous Advisory Council and fostering linkages between bureaucrats, business and Indigenous leaders, he details mixed outcomes across four key areas — health, education, employment and safe communities. The outcomes were consistent with the Closing the Gap Clearinghouse report released a year earlier,3 which identified key high-level principles and practices characterising programs that worked: flexibility to meet local needs and contexts; community involvement and engagement; building trust and relationships; a well trained and resourced workforce; and continuity and coordination. Themes associated with less successful initiatives included: programs implemented in isolation; short-term funding and high staff turnover; lack of cultural safety; and inflexible program delivery. Similar issues emerged in a recent review of early childhood parenting, education and health intervention programs.4

Clinicians working in remote Australia will not be surprised. There have been health gains, but they are uneven: remote Indigenous Australia is clearly behind. Furthermore, it can be argued that for some conditions and in some areas the situation is worse despite significant clinical investments. For instance, when I began work as a psychiatrist in Cape York and the Torres Strait over 20 years ago, there were no mental health or substance misuse services. Now there are well over 100 workers across Queensland Health, Education Queensland, the Royal Flying Doctor Service, Medicare Locals, community-controlled services and Commonwealth-funded programs, plus contracted private clinicians. This does not include the dozens of residents trained variously in community and personal wellbeing, empowerment, mental health literacy, suicide prevention and more. Sadly, the situation in terms of mental illness is worse, probably reflecting both contemporary social contexts and delayed effects of neurodevelopmental adversity.5,6

Our understanding of the developmental determinants of chronic disease in Indigenous Australians has been evolving for more than half a century7 and there is accumulating evidence on childhood social factors increasing the risk of adult-onset mental disorders. For example, bereavement stress in mothers during the first years of life (particularly after suicide in the family) increases the risk of affective psychosis.8 Research on such topics involves controlling for potential confounders. In the real world of remote Indigenous communities, many children are exposed to serial adversity: pregnancies affected by high levels of stress; poor nutrition and inadequate antenatal care; prematurity; infant environmental instability and attachment difficulties; hospitalisation and other forms of separation from caregivers; bereavement stress; exposure to violence; early-onset substance misuse; and more. We can only presume that the consequences of such risk amplification will be substantial.

In 2006, soon after Pearson commended him, Tony Abbott called for a new form of “paternalism” that would be “based on competence rather than race” to address unrelenting Indigenous health problems associated with failed past policies such as self-determination.9 Now, he holds the reins. But whatever happens, the economic agenda will weigh heavily; Indigenous Australians will not be quarantined from budget cuts, changes to Medicare and welfare entitlements, privatisation, and the continuing feud between federal and state governments over health funding. In Queensland, public sector services (particularly population health and health promotion) sustained dramatic losses in the 2012–13 financial year that will be most consequential for remote Indigenous communities. Career public sector employees are giving way to locums, casual workers, agency nurses and project workers funded by non-government organisations. While this may bring new ideas, it risks losing domain knowledge and incremental improvement based on practice-based evidence.10

While there is no doubt that greater economic self-reliance will be critical to Indigenous futures, I believe that there is complacency regarding the flow-on effects of the contraction of federal and state public sectors for Indigenous health in remote Australia. Indeed, to support self-reliance in the long term, it is critical that we increase and sustain strategic investment in public health and clinical programs for pregnancy and early childhood to optimise neurodevelopmental potential. Is it “radical hope” to suppose that the new paternalism and new engagements will deliver? Or, as Pearson suggests in his chapter on cycles of policy reinvention in Indigenous affairs, will it be groundhog day?

Follow-up of Indigenous-specific health assessments – a socioecological analysis

Preventive health assessments have become a feature of health policies internationally.1 In Australia, Medicare-funded Indigenous-specific health assessments (herein referred to as “health assessment”) and follow-up items have been progressively introduced since 1999 as a means to improve the limited preventive health opportunities and reduce high rates of undetected risk factors among Aboriginal and Torres Strait Islander people (respectfully referred to hereafter as Indigenous people) (Box 1).3,4

A recent systematic review shows that while health assessments may increase new diagnoses, there is a lack of evidence of their effect on morbidity and mortality.1 While the reasons for lack of impact of health assessments are not well understood, it is clear that health assessments have limited potential to impact on health outcomes in the absence of appropriate follow-up care.5–7 The $805 million Indigenous Chronic Disease Package (ICDP) introduced by the Australian Government in 2010 included program funding and a new workforce to help increase the delivery of health assessments and appropriate follow-up.8

Analysis of Medicare data shows an increase in the uptake of health assessments, but relatively limited billing for Indigenous-specific follow-up items.5,9 The limited use of follow-up items raises questions about the effectiveness of health assessments as a catalyst for enhancing access to preventive care and chronic disease management,10,11 and highlights the need for further research on how to increase follow-up after a health assessment.12

This paper reports on patterns of uptake of health assessments and associated follow-up items, and examines the barriers and enablers to delivery and billing of follow-up care over the first 3 years of implementation of the ICDP.

Methods

The analysis presented here draws on the mixed-methods Sentinel Sites Evaluation (SSE) of the ICDP. SSE methods are detailed elsewhere.5 The SSE was a formative evaluation covering 24 urban, regional and remote locations in all Australian states and territories. Data were collected, analysed and reported in 6-monthly intervals over five evaluation cycles between 2010 and 2012.

Data on uptake of health assessments and follow-up items were derived from administrative billing data provided by the Department of Health from 1 May 2009 to 30 May 2012. The period May 2009 to April 2010 was used as a “baseline” period, as it preceded implementation of the ICDP. Health assessment data include Medicare Benefits Schedule (MBS) items, and are presented as health assessments claimed by services within the site boundaries per 100 Indigenous people aged ≥ 15 years. Similarly, the follow-up data include MBS items for follow-up of health assessments (see Box 1 for health assessment and follow-up items included in this analysis). Population data are based on Australian Bureau of Statistics projections from the 2006 Census according to the statistical boundaries used to define the sites.

Qualitative data on barriers and enablers to delivery of and billing for follow-up were obtained from individual and group interviews with a range of key informants from Aboriginal Health Services (AHSs), which include community controlled and government managed health services, and the general practice sector, which includes employees of Medicare Locals and general practices (Appendix 1). Interviewees were purposively sampled for their knowledge and experience with the ICDP. Interviews and analysis were informed by data on state of implementation of the ICDP at site level, as reflected in Department of Health reports. Repeated 6-monthly cycles of interviews and feedback of data between 1 November 2010 and 30 December 2012 allowed review and refinement of our understanding of delivery and billing of health assessments and follow-up items.

Community focus groups were conducted to explore community perceptions of accessibility and quality of services. Data from community focus groups were related to access to health services in general rather than being specific to follow-up of health assessments.

For the purposes of this paper, we conducted an analysis of SSE data using a socioecological framework.13,14 We reviewed the themes that were identified through the SSE as barriers and enablers to follow-up of health assessments,5 and used an iterative approach to categorise these themes according to various levels of influence: patient, patient–health service relationship, health service or organisation, community and policy environment. Some themes could be interpreted as a barrier or an enabler, and some were relevant to more than one level. We have therefore described each theme according to the predominant direction and most important level(s) of influence.

Ethics approval for the SSE was granted through the Department of Health Human Research Ethics Committee, project 10/2012.

Results

Of the 581 individual interviews done through the SSE, 63 contained specific information about the follow-up of health assessments. Of the 58 group interviews, 31 contained information relevant to this paper. These 31 group interviews included 103 participants. Of the 72 community focus groups, 69 provided data on access to services (Appendix 1).

Uptake of Indigenous-specific health assessments and follow-up Medicare items

Aggregated data show a general improvement in uptake of health assessments and follow-up items after the baseline period, with some differences in trends between the sentinel sites and the rest of Australia (Box 2 and Box 3). The uptake of follow-up items was disproportionately low compared with health assessments. There were marked differences in trends between individual sites (Box 4) — more marked than differences between sites according to rurality.5

Levels of influence

Barriers and enablers to delivery and billing of follow-up care using a socioecological framework were identified at five levels of influence: patient, interpersonal, health service, community and policy. Findings at each level of influence are summarised below and exemplar quotes illustrating each theme and sub-theme are provided in Appendix 2.

Patient level

Strategies to create community demand and incentives for patients to undergo health assessments were evident at the local level. These strategies did not appear to include attention to increasing follow-up of health assessments, and there was little evidence of patient demand for follow-up after health assessments in the sentinel sites overall. People working in ICDP-funded support roles with responsibility for encouraging patients to attend for follow-up reported that patients frequently appeared to lack information about the reasons for their follow-up referrals.

Interviewees in some sites identified relatively frequent movement of people, with no regular residential address and limited options for contacting patients by phone, as constraining follow-up care. Limited access to transport was consistently identified by community focus groups as a barrier to accessing services. Concerns were expressed about the cost of accessing follow-up services, with out-of-pocket costs to patients for allied health care in particular being unpredictable.

Interpersonal level

Negative past experiences affected patients’ willingness to attend follow-up appointments. Community focus groups and interviewees shared personal stories that reflected perceptions of racist attitudes among health service staff — commonly reception staff.

Outreach workers, funded through the ICDP, played a key role in educating and supporting allied health providers and clinicians to provide culturally appropriate care in isolated pockets, but overall, allied health professionals had relatively limited access to cultural awareness training. General practitioners and practice staff were reluctant to refer patients to allied health professionals who they could not be confident would act in a culturally appropriate way.

Some GPs reported reluctance to refer patients for follow-up unless critical because they believed the patient would not attend, or they provided referrals with no expectation of attendance. Some patients appeared to resist adherence to follow-up referrals and treatment due to what they regarded as the “pushy” nature and communication style of some health professionals, and lack of adequate explanation of their health problem and treatment needs.

External support by regional support organisations including Divisions of General Practice (and subsequently Medicare Locals) helped improve awareness of the Indigenous-specific follow-up item numbers in health services and among allied health providers.

Health service level

Health service providers felt that short consultation times meant they had limited opportunity to explain reasons for referral for follow-up care to patients. This was related in part to shortage of service providers, including GPs, allied health professionals, Aboriginal Health Workers (AHWs) and practice nurses. Limited numbers of allied health professionals in particular constrained referral for allied health services. In some settings, eligibility requirements meant that some AHWs appeared to be ineligible to bill for relevant follow-up services, constraining use of these item numbers.

Organisations tended to have a greater focus on health assessments — partly for financial reasons rather than potential health benefit — with less attention to follow-up. This imbalance was also evident at policy and patient levels. Small numbers of Indigenous patients in many general and allied health professional practices were associated with a reluctance to reorient systems to address the needs of relatively few patients.

A general orientation within some health services to acute rather than chronic illness care limited the availability and interest of many nurses in providing follow-up services. This was particularly the case in remote settings, where acute care skills are an important criterion in recruiting nurses. GP-centric models of care, lack of clarity about roles and lack of confidence in co-workers were associated with limited opportunities for practice nurses and AHWs to manage patient lists and appointments and deliver follow-up consultations.

Another constraint on the uptake of follow-up items was the lack of established systems to organise and bill for follow-up, and a perception that the steps required for completion and correct billing of follow-up services were complex and required highly organised patient records and information flow. The need for changed work patterns, reorientation to preventive health and enhanced staff training and support in the use of clinical information systems presented significant challenges to health services in delivering and claiming these Medicare items. Leadership and management were vital to system change: where leadership lacked commitment, management practices did not support system change to implement this aspect of the ICDP. Where GP-centric models of care were entrenched, it was particularly difficult to reorient systems to enhance uptake of follow-up items.

Lack of capability in using clinical information systems, such as patient recall and reminder systems, also constrained follow-up. Ineffective use of these systems to support patient care was commonly reported in AHSs and general practices, and was also evident in allied health professionals’ practice systems.

Staff turnover and use of locum staff (both nursing and GP) were associated with limited use of follow-up items. GPs were found to have varying knowledge and skills in relation to accessing appropriate Medicare items and working within a multidisciplinary team. Fluctuating staff numbers and variable knowledge among staff of the service operations made it difficult to reorganise systems to enhance follow-up.

Interviewees commonly reported that follow-up consultations were frequently billed as a standard consultation rather than the correct Indigenous-specific Medicare item number.

Lack of private allied health providers, and a tendency — for cost reasons — for clinicians to refer to salaried allied health professionals, where these professionals were available, also limited the use of the Medicare follow-up item numbers. Lack of easy access to information and transparency around gap payments, and entrenched perceptions that services would be expensive and require numerous repeat visits, were a barrier to health service staff referring patients to allied health professionals.

Community level

Barriers related to Indigenous social and economic disadvantage included poor availability of transport to attend follow-up appointments and high or unpredictable cost of allied health services. These were exacerbated in the context of general social and financial disadvantage. ICDP-funded outreach workers played an important role in helping patients overcome transport barriers in some sites.

Policy level

At the policy level, the relatively low value of the MBS reimbursement for follow-up (relative to health assessment), reflected in the large gap payments that patients are faced with, appears to be an important constraint to greater uptake of the financial incentives available for follow-up. Increased and ongoing funding to support preventive care through Medicare encouraged uptake of follow-up care. The impact of this was constrained by relative emphasis on health assessments. There was confusion over eligibility of AHWs to claim the use of the follow-up items. Funding of positions and programs (including through the ICDP) to assist with provision of information to providers and community members and to overcome barriers to access enabled uptake of follow-up items.

Discussion

While there has been a substantial increase in the uptake of health assessments over recent years, delivery of follow-up care and billing for Medicare Indigenous-specific follow-up items was disproportionately low, particularly given the evidence of the high levels of need for follow-up.6,12,15,16 Our study identified multiple influences on uptake of follow-up care at various levels of the system — many related to actual delivery of follow-up care and some related to billing for Medicare items numbers. The influences identified in our analysis are consistent with the research on barriers to implementing health assessments and on access to health services more generally.3,6,7,17–19 It appears that people receiving health assessments may be those who use health services more frequently,5 those of higher socioeconomic status, those with lower rates of morbidity and mortality and those with lower risk of chronic disease.1,20 Thus, health assessments may not be reaching those who need them most, reducing potential benefits at a population level. This “inverse care law”21 is likely to also be relevant to follow-up of health assessments, indicated by the access and cost barriers to follow-up identified in this analysis.

Strengths of the analysis in this paper include the mixed-methods approach, numbers and diversity of interviewees, geographic scope and diversity of study sites, and long-term repeated engagement with stakeholders, including feedback and member-checking of data and interpretation by local stakeholders. The socioecological analytical framework highlights that there are a number of factors at different levels of the system that enable or constrain choices made by individuals about access to health care.13,14

Limitations of this study include that sites were selected on the basis of early and relatively intense ICDP investment, and interviewees were selected because of their knowledge and interest in Indigenous health. The data provide a broad perspective of service settings across Australia, but this perspective may not necessarily be representative. Other limitations include that administrative data reflect billing for Medicare items, but do not necessarily accurately reflect the provision of clinical care. There is some evidence that follow-up may be happening, but that it is not being billed accurately. However, many of the identified barriers related to delivery of follow-up care rather than billing for follow-up items. Ecological models require themes to be categorised, and this process may be overly Western-centric.22 In conducting the analysis our team (which included Indigenous members) was sensitive to this risk. The strong links and interrelationships between themes need to be recognised. More general limitations of the SSE have been described elsewhere.5

Overcoming barriers to follow-up and strengthening enablers is vital to achieving health benefits from the large financial and human resource investment in health assessments. Our findings point to the need to support health services in developing systems and organisational capability to undertake follow-up of health assessments, but more importantly to reorient to high-quality, population-based and patient-centred chronic illness care. Drawing on our findings, we propose actions at various levels of the system to enhance both delivery of follow-up care and billing for follow-up items (Box 5). The diversity of contexts in which health services operate, the wide variation in current levels of follow-up between sites and the relevance of different contextual factors to barriers to uptake in different sites mean that strategies will need to be tailored to local circumstances.

1 Medicare Benefits Schedule (MBS)-rebated items for Indigenous-specific health assessments and follow-up2

Item characteristic

Health assessment

Follow-up by a PN or registered AHW

Follow-up by an allied health professional

Description

Available to all Indigenous people and may only be claimed by a general practitioner

After a health assessment, a follow-up item can be claimed by GPs for follow-up services delivered by a PN or registered AHW on behalf of the GP

After a health assessment, if the GP identifies a need for follow-up by an allied health professional, a referral is made and the allied health professional can claim this item

MBS item number

704, 706, 710 to 1 May 2010; thereafter 715

10987

81300–81360

MBS rebate

$208.10

$24.00

$52.95

Notes

Changed to simplify claiming by streamlining MBS item numbers to one item and making all claimable annually. This came into effect from May 2010 and coincided with implementation of the ICDP

Introduced in 2008, this MBS item allowed five follow-up services per patient per calendar year. This was expanded in 2009 to allow 10 follow-up services per patient per calendar year

Introduced in 2008, on referral from a GP, a maximum of five follow-up allied health services per patient per calendar can be claimed

AHW = Aboriginal Health Worker. ICDP = Indigenous Chronic Disease Package. PN = practice nurse.

2 Health assessments provided by a general practitioner, and follow-up services provided by a practice nurse (PN), registered Aboriginal Health Worker (AHW) or allied health professional

3 Follow-up services provided by a practice nurse (PN), registered Aboriginal Health Worker (AHW) or allied health professional in Indigenous people who had a health assessment

4 Uptake of practice nurse (PN), registered Aboriginal Health Worker (AHW) or allied health professional follow-up items in all urban sentinel sites and in the rest of urban Australia

NSW = New South Wales. Qld = Queensland. SA = South Australia. Vic = Victoria.

5 Potential strategies for strengthening follow-up of health assessments

Approaches to enhancing follow-up are presented for each level of the socioecological model. It is important that strategies to enhance follow-up use approaches across the range of levels, with attention to maximising synergies between approaches at different levels.

Patient level

develop locally relevant evidence-based approaches to create community demand for follow-up of adult health assessments;
address transport and other barriers to access to follow-up care; and
strengthen linkages between health services and local communities to enable recall of patients who require follow-up.

Interpersonal level

ensure that cultural awareness training reaches relevant providers, including allied health professionals and service support staff, such as receptionists.

Health service level

continue efforts to raise awareness of the follow-up Medicare Benefits Schedule (MBS) item numbers among health service staff and allied health professionals, including how item numbers complement each other and why the correct Indigenous-specific item numbers should be used (eg, additional numbers of items available with specific item numbers);
strengthen capability of health service staff to make effective and efficient use of clinical information systems, specifically including use of recall and reminder systems. Ongoing training and workforce development is required to address staff turnover and locum staff needs;
support service reorientation from models suited to acute care to models suited to patient-centred and long-term care;
develop and assess effectiveness and efficiency of alternate models of provision of allied health services and “what works for whom and in what circumstances”; and
identify and communicate cost implications of referral for follow-up care, and address cost barriers to follow-up care.

Community level

raise awareness of the need for ongoing chronic illness care and the importance of follow-up of issues identified in health assessments; and
identify relatively high-need and hard-to-reach groups in local communities, and develop strategies to overcome the barriers to these groups accessing follow-up care.

Policy level

clarify the Aboriginal Health Worker role in provision of services, including provider number eligibility;
ensure that the policy intent of having an Indigenous-specific MBS item number for follow-up services is clearly understood at different levels in the system; and
emphasise the health-relevance of health assessments and the importance of follow-up care, and refine incentives to maximise potential health gain.

What can circle sentencing courts tell us about drug and alcohol problems affecting Aboriginal communities?

In New South Wales, circle sentencing courts take place outside of the courthouse, in a more informal community setting. The circle is made up of the magistrate, prosecutor, victim, offender (and his or her supporters), four respected Aboriginal Elders (who are significant to the offender), a representative of the support agencies and a lawyer from the Aboriginal Legal Service. The group talks about the impact of the crime on the victim and looks at the background of the offender and what caused him or her to get on the wrong path. The discussion can last up to 3 hours, after which the group develops a circle sentencing outcome plan, upon which all parties agree. The most important recommendations are made by the Elders. The outcome has to be acceptable to the magistrate. Nowra’s circle sentencing court has been operating for close to 12 years and the magistrate there has never yet disagreed with the Elders. The circle outcomes also need to suit the ability of offenders to comply with the conditions, as we don’t want them to fail.

How the circle relates to the Aboriginal traditional way of dealing with offenders

Up until the 1860s in the Shoalhaven region, we had a council of karadji men to administer tribal law. A locally known karadji man was Johnny Burriman. Keith Campbell wrote of him in the South Coast Register:

The work of Johnny Burriman to gain recognition for an important place for Aboriginal law in the Australian legal system failed, but the issue has remained. A significant step taken appropriately in the Shoalhaven district in recent years has been the introduction of circle sentencing.1

I believe this was a small but significant step towards recognition of the authority of a council of Elders, if not our traditional lore.

The Nowra circle sentencing court provides for sensitivity in reaching a sentence with as much compassion as the crime allows, but without frustrating Parliament’s intention. The justice carried out is a combination of criminal law and traditional values. Whereas the criminal justice system regards crime as something to be punished, Aboriginal people view it as something that requires healing. The regular courts have recently adopted a similar approach: their concept of it is therapeutic jurisprudence.2

How effective has it been?

The greatest achievements of the circle sentencing courts have been bringing down the barriers between the courts and the Aboriginal community, gaining mutual respect and also gaining a great deal of knowledge around the root causes of crime within Aboriginal communities, especially as it relates to alcohol and drug misuse.

The knowledge that has been obtained through open and honest dialogue between the Elders, the offenders and the victims could be regarded as revolutionary. Information is received “from the horse’s mouth” — from the people who have committed the crime, who are experiencing the disadvantages and suffering of alcohol and drug misuse. They are open and honest about it. Sometimes they break down and cry and volunteer insights about their lives. Some circle members even reveal information about themselves for the first time in their lives.

Aboriginal Elders effectively use the Koori way of obtaining comprehensive information from offenders, through the narrative form rather than questions and answers, as it is our cultural way of communicating. The Elders are also very clever in their use of shame: they make the offenders ashamed of their actions rather than of themselves. They say to an offender, “Be a proud Koori: you come from a good family and a rich culture, but you have got to be ashamed of your actions; this is bad”.

Understanding what underlies drug and alcohol problems

It is well known that the underlying causes of crime are unemployment, poor housing, poor education and poor health. As a result of the honest and open dialogue in each circle sentencing case, we have been able to identify some of the further underlying causes of this for Aboriginal people. We have discerned much self-depreciation, low confidence and low self-esteem, derived from 200 years of demonisation by the media and government and only learning about the negativity of Aboriginality. There is also direct trauma from sexual abuse, assault, other types of violence and racism. Being told you are lazy and good for nothing becomes a self-fulfilling prophecy over time. Additionally, there is indirect transgenerational trauma. Many of our offenders are from the Stolen Generations or are affected by family members who were. Aboriginal and Torres Strait Islander people who have been removed from their families often suffer feelings of abandonment and rejection. Their reactions take numerous forms, including anger, grief, loss of identity, alcohol and substance misuse, violence and other socially unacceptable behaviour, problems in relationships, psychological difficulties and isolation. Lack of identity can be linked to mental illness. As Aboriginal people operate on a collective or community level, the extended family is integral to the recovery process. Many often find themselves feeling caught between two worlds — their Koori heritage and the white world they grew up in. This can lead to a sense of not belonging, or feeling unwelcome in either world, with a crippling sense of isolation.

Problems like these need to be taken into account by the court system. This information does not supply the court with an excuse for an offence but it does supply an understanding of the root causes of crime, which is subsequently helpful in developing and delivering crime prevention programs. It is our belief that if clients have the opportunity to work on these problems, it gives them a chance to heal and not repeat the behaviour that led them to the court.

Often Aboriginal people use alcohol and drugs as an anaesthetic for the pain, fear and loss of cultural identity they are experiencing. The “dual diagnosis” which may result does not just refer to clients with hard-core drug problems and schizophrenia. It also refers to clients with a lifetime history of alcohol use disorder and coexisting mental or other drug disorder. The most common mental disorders among offenders with any drug use disorder are anxiety disorders. Some evidence of the intensity of this problem was provided in the 2009 NSW Young People in Custody Health Survey, which found, among other important and disturbing findings, that 92% of young Aboriginal people in custody had a psychological disorder and 83% were risky drinkers.3 Young Aboriginal people make up 49% of the juvenile population in custody.4 Drug and alcohol problems are not easy to overcome if you don’t know much about the causes. Service providers can learn more about the underlying causes of this problem and how to deal with them by participating in cultural awareness training.

After the circle — providing care

In circle sentencing courts, most offenders, and particularly those who commit the more serious offences, are people with a dual diagnosis. This is where the crime problem really becomes a health problem. To deal with it, Justice Health provides liaison nurses who work in courts and corrective services. We also have drug courts to deal with drug-addicted criminals. However, there still appears to be a problem in dealing with offenders with dual diagnosis, mainly because they don’t recognise or accept their illness. Within our Koori communities, there is a stigma around mental illness that leads to self-medicating with illicit drugs. There are also cultural barriers in accessing mental health services in NSW. Clients move between drug and alcohol and mental health services, and dual diagnosis clients are at risk of falling through the gaps. Most importantly, we need a model to promote community-based recovery rather than reliance on inpatient services, as Aboriginal people won’t remain away from their families for long periods of time.

Overcoming the root causes of drug and alcohol use and resultant crime

We need to develop wellbeing programs that focus on physical, psychological, spiritual and personal wellbeing, so that offenders are able to overcome their drug and alcohol dependency and move on to employment, housing, education and good health. We need to tackle the root of the problem if we are to break the cycle of welfare dependency and drug taking that ends in crime and despair.

In a circle, Elders can only direct offenders to do something about their problems; but these directions are taken seriously by the offenders because they are delivered by their respected Elders. However, Aboriginal and mainstream support services are needed to assist offenders to heal afterwards. Aboriginal organisations act as a link between clients and professional and mainstream services and are able to advocate, refer and liaise as necessary. But mainstream services can be limited by a lack of resources and training of support workers about the cultural and communication barriers that prevent them from working effectively with Aboriginal offenders. Some of our clients have experienced judgemental and patronising staff, including psychiatrists, psychologists, drug and alcohol counsellors and general health workers, who have lacked patience, empathy or cultural insight. Cultural bias still remains in the literature of psychology. We need culturally appropriate training for service providers — training that takes into account our differences in experiences, ways of communicating, values, kinship and families, along with insight into healing that recognises the impact of transgenerational trauma, our history and experiences on the current life situations of our people. At the end of the day, our clients have to access these mainstream services. If we fail in these areas, what good are all the efforts we put into getting our people to these services in the first place?

The need for additional support and training

I believe that the programs and training I am calling for represent the way forward. We need to train those who work in mainstream services to be competent when dealing with our people. In the criminal justice system, we are mostly dealing with Aboriginal people with very poor education who are often isolated from the rest of society. In the past, Aboriginal people were denied an education in Standard English and were only taught a modest amount of the English language, from which developed Aboriginal English. This language is still spoken frequently within Aboriginal communities. There is also the matter of poor health to contend with.

Although there is no one solution to the problem of crime, we have to try a combination of what is working in some areas. We need circles accompanied by cultural programs and specialist counsellors to help our people deal with dual diagnosis and trauma. Men’s group programs such as Red Dust Healing (http://www.thereddust.com) and Rekindling the Spirit (http://www.rekindlingthespirit.org.au) are very effective. The Waminda women’s organisation health and wellbeing program is also very effective for Aboriginal women.5 We need to promote pride in Aboriginal identity and culture, based on the belief that this is central to the health and wellbeing of our people and that knowing who you are as an Aboriginal person is central to any positive life. We also need to forge strong partnerships between organisations and agencies so that our clients don’t fall through the gaps.

Conclusion

When we lost our lore and important cultural and traditional way of life, we reached a point where we began to normalise abnormal behaviour such as substance misuse. This is not our traditional way. It is happening mainly because we have lost our structural system of learning and control. Circle sentencing operates on the understanding that the underlying causes of crime are often broader than a single incident and that they need the active participation of the whole community to fix them.

Circle sentencing highlights a need to develop effective cultural programs that educate our people about the positive aspects of our culture and Aboriginality and enable us to take pride in ourselves. These programs should improve the overall health standards of our people by promoting social and emotional wellbeing, acknowledging culture and identity as pivotal in reaching positive outcomes, and prioritising wellbeing as a vital foundation for belonging and identity. Service providers also need to be educated about Aboriginal communication styles, to ensure equality of access to justice and health services. Courts in NSW have developed a program to overcome this problem at a grassroots level, by employing Aboriginal client service specialists in local courts to service Aboriginal clients directly at the counter, in the registry and in the courtroom. Their most important and demanding task is interpreting court rulings. Only when all of these initiatives are put in place will the statistics on our people coming into contact with the criminal justice system begin to decrease.

Above all, the circle teaches us the need to recognise that the past still affects us today. The trauma and dispossession of colonisation compound the harmful effects on our health and culture. The summary statement of the International Symposium on the Social Determinants of Indigenous Health identified colonisation of Indigenous peoples as a central and undeniable causal factor in ill health.6 Colonisation has resulted in the decimation of much traditional Indigenous culture and customary practices, rituals and systems, particularly for Aboriginal people living in urban and regional areas (Mary Goslett, Masters student, Australian College of Applied Psychology, unpublished research paper).7

We are behind the eight ball when it comes to economic and social status. It is only very recently that our culture has begun to be celebrated and accepted to an extent that will assist our next generation to take pride in themselves as Aboriginal people of this country. Reconciliation is the way forward for us, but it will take time and a lot of effort on both sides to reconcile our differences. Circles, I believe, are reconciling our differences within the criminal justice system. Thoughtful and intelligent people from all walks of life will continue to make true reconciliation happen in this country.