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Human rights trauma and the mental health of West Papuan refugees resettled in Australia

Concerns have been raised about human rights violations occurring over an extended period of time in West Papua, although the flow of information is limited because of restrictions in access to the province.15 The territory occupies the western half of the New Guinea landmass and was a Dutch colony until 1966, when it was annexed by Indonesia after a referendum that was widely regarded as invalid.2 Since then, there has been an ongoing resistance war aimed at achieving independence for West Papua, with reports of human rights violations including murder, torture and other forms of abuse. In addition, the indigenous population live in conditions of socioeconomic underdevelopment in spite of the wealth generated by the exploitation of natural resources.14

The ongoing conflict has resulted in a number of refugees seeking asylum in neighbouring Papua New Guinea and Australia. Refugees have been targeted directly by the Indonesian military for having an association with the independence movement.2,3,5,6 Most refugees are settled in Papua New Guinea, given that the onward trip to Australia is fraught with danger and uncertainty about achieving residency status.

The existing community of West Papuan refugees in Australia have permanent residency visas, the right to work and to health and social services, including English language training.

To our knowledge, there have been no systematic reports to date on the traumas, stresses and mental health of West Papuan refugees living in Australia.2 In this study we aimed to explore West Papuan refugees’ reported exposure to human rights violations and other traumas in West Papua, their ongoing living difficulties, particularly those associated with separation from their homeland, and manifestations of mental distress consistent with these experiences.

Methods

The study was undertaken between October 2007 and November 2010. We adopted a mixed-methods approach, combining mental health measures and in-depth interviews, following a procedure that is consistent with the Consolidated criteria for reporting qualitative research (COREQ).7 We were guided by the theoretical perspective of pragmatism, affording equal weighting to the quantitative and qualitative data,8,9 and drawing on the principles of complementarity, where quantitative and qualitative methods are used to address different facets of the same problem, and confirmation, where the results of two methods are examined to assess for convergence, dissonance or ambiguity.8

Study sample

West Papuan leaders estimated that there were 60 refugees residing in Australia, forming our target group. We applied a snowball recruitment method, with early participants assisting in locating and approaching other members of the West Papuan community who had arrived as refugees. We achieved an 88% response rate, with 37 men and 7 women participating. Of the total 44 participants, 28 resided in Melbourne, and 16 in North Queensland; however, members of the community tended to move between the two locations for work purposes. The gender balance reflects the pattern of migration, with more men leaving West Papua as refugees.

Six of those approached refused interviews because of fear of reprisal, and four returned to West Papua before their interview. We could not contact the remaining six identified West Papuan refugees. Given that several participants did not know their date of birth, we derived broad age groupings as follows: 19–30 years (14 participants), 31–40 years (17), 41–50 years (six) and 51 years and over (seven). Twenty-eight participants were single, 11 were married and four had been married previously. Sixteen participants were students, 20 were employed in agriculture (mainly on banana plantations), and the remainder were unemployed. To ensure protection of identities, we did not record actual dates of arrival in Australia. Nevertheless, we could confirm that most participants arrived in Australia during two migration waves (1980–1986 and 1995–1996), with a small number resettled in the 1970s.

Measures

The Harvard Trauma Questionnaire (HTQ) is the most widely used measure of post-traumatic stress disorder (PTSD) in the refugee and post-conflict mental health field.10 Two threshold scores have been applied in the literature: the commonly-used clinical cut-off of 2.5 and the lower cut-off of 2.0.11 The measure also lists commonly experienced human rights-related traumas and related severe stresses (scored 0 for no, 1 for yes), yielding a summary score of premigration potentially traumatic events (PTEs). Based on preliminary focus group data, we adapted the list to include items relevant to West Papua. Similarly, the Post-Migration Living Difficulties (PMLD) checklist was modified to assess postmigration stresses relevant to the experiences of West Papuan refugees in Australia over the past 12 months.12 The PMLD provides a summary score of total living difficulties (sum of items each scored 1 if causing severe or very severe stress).

The Kessler Psychological Distress Scale (K10) is a self-reported measure of psychological distress used extensively across countries, and provides a proxy index of depression and general mental disorder.13,14 We applied the established thresholds of mild (20–24), moderate (25–29) and severe distress (> 30) to provide gradations of symptoms within the community.

We applied an index of days out of role as a measure of disability, based on the number of days, out of the past 30 days, in which health-related problems prevented participants from conducting their usual daily activities.15

Procedure

The quantitative measures were applied across the whole sample. Qualitative data were collected in two phases. Phase 1, in the North Qld group, included in-depth open-ended interviews focusing on experiences before, during and after migration. Phase 1 also explored indigenous concepts and descriptions of idioms of distress reported elsewhere.6 From Phase 1 data, we derived themes relevant to the stressors and traumas experienced, which formed the basis of a semi-structured interview used in Phase 2 with West Papuans living in Melbourne.

Interviews were undertaken by West Papuan or Australian members of the research team. Australian interviewers not fluent in Bahasa Indonesia worked in parallel with West Papuan collaborators acting as translators. Participants were interviewed in their homes or at other private locations. Interviews extended up to 2 hours and included short breaks. Consent was obtained in accordance with ethics clearance from James Cook University, where the first author was employed at the beginning of the project.

Statistical analyses

We provide descriptive data (counts, means, SD) for premigration (human rights-related) traumas, postmigration stresses and measures of mental health. Pearson correlation coefficients are reported for associations between mental health indices and days out of role. Statistical analyses were undertaken using IBM SPSS Statistics version 20.

Mixed-methods data analysis

NVivo version 9 (QSR International) was used to derive metathemes and subthemes from the qualitative data to illustrate the interaction of stresses and traumas with mental health symptoms.1618 All data were collected and recorded systematically, with triangulation of results achieved by cross-verification of findings across research methods (qualitative interviews, quantitative measures), thereby providing additional validity for the findings.19

Results

Human rights violations and
other PTEs

Most of the West Papuan refugees (40/44) reported experiencing one or more categories of PTEs relating to their lives in West Papua (Box). In order of prevalence, the PTEs reported included family members being sick and unable to access health care (40/44), lack of food or water (39/44), personally being sick and unable to access health care (38/44), forced separation from family members (35/44), witnessing the murder of a family member or friend (34/44), lack of shelter (31/44) disappearance of family members (33/44), having one’s house intentionally burnt down by Indonesian militia or police (29/44), physical assault (27/44) experiencing a combat situation (26/44) and torture (21/44).

Describing the range and contemporary relevance of these traumas, a participant said:

People don’t know much about West Papua, there is a lack of interest in West Papuan issues. They don’t know about 10 to 15 students who support West Papuan independence every week being taken to prison to be tortured.

and

. . . they [Indonesian military] take over my country, kill, rape, and steal our property like gold, oil, timber, copper and fish.

Postmigration living difficulties

The most prevalent stresses faced by West Papuan refugees while living in Australia were associated with unresolved conflict in their homeland, including forced separation from family members residing in the home country (43/44), associated worries about the safety and wellbeing of family members (43/44), and not being able to visit their homeland in times of emergency because of ongoing conflict (41/44) (Box). Sharing the experience of most, a participant explained:

I feel sad and grieving because of the loss of land, separation from family, and the abuse of Papuans, I feel helpless, I can’t help my family back home, and we have lost everything.

PTSD symptoms

Most of the participants (26/44) reached the lower threshold for PTSD symptoms of 2.0, and 13 participants met the clinical threshold of 2.5. Commonly reported symptoms of post-traumatic stress included repeated nightmares and memories associated with traumatic experiences, flashbacks, periods of memory impairment, persistent avoidance of triggers of trauma events, reduced emotional responsiveness and social detachment, as well as a heightened state of arousal.

Reminders from the homeland triggered intrusive memories of past trauma:

I get very frightened when I hear news from home like family member pass away or Indonesian army killed one of my family members which reminded me of what happened before . . .

K10 results

According to the conventional cut-off scores for the K10, 21 participants had mild psychological distress, 11 had moderate psychological distress, and 14 had severe psychological distress. Over 30 participants reported prominent symptoms indicative of depression and anxiety, including feeling everything was an effort, that nothing could cheer them up, and feeling restless and fidgety. Explaining the significance of the trauma and loss to ongoing symptoms of distress, a participant said:

I feel sad because of what Indonesian military has done in WP [West Papua] . . . because my family passed away back home; because I can’t help my family back home; because people lost everything back home.

Disability

PTSD symptoms (mean, 2.05; SD, 0.62) were associated with the mean days out of role in the past month (mean, 3.71; SD, 5.76; Pearson correlation coefficient [r] = 0.375, P = 0.01), with psychological distress showing a trend in the same direction (mean, 24.25; SD, 8.90; r = 0.229, P = 0.15).

Discussion

Our study is the first mental health inquiry worldwide to document reported human rights violations and other PTEs and stressors experienced in the homeland, difficulties after migration, and trauma-related mental symptoms among refugees from West Papua. The data indicate that West Papuans report exposure to a wide array of human rights violations and other traumatic events in their home country, comparable to the experiences of other refugee groups exposed to conditions of mass conflict.20,21 Commonly reported traumas in our survey included lack of food or water, witnessing the murder of a family member or friend, having family members disappear, houses being intentionally burnt down and being involved in combat. Being unable to access medical care for oneself or one’s family in an emergency was the most widely experienced stressor, endorsing other reports identifying the problem of access to adequate health services for the indigenous people of West Papua.24

Importantly, refugees reported that family, friends and others were being exposed to similar traumas in their contemporary lives in West Papua. It is noteworthy that 48% of our sample reported being tortured, a form of abuse that is particularly potent in generating severe and persisting PTSD.20 The rate of exposure to torture is notable, given that an extensive systematic review of refugee research has shown that 21% of participants in 84 epidemiological surveys among refugees and conflict-affected societies worldwide reported being subjected to this form of abuse.20

There is accruing evidence that postmigration stressors can interfere with successful settlement among refugees.22,23 It was notable that the most highly reported postmigration stresses related to ongoing conflict in the homeland and anxieties about the safety and security of family remaining behind. Many refugees indicated that they would not be able to overcome their state of distress until the conflict in their home country ended and they were assured of the safety of their families.

The prevalence of symptoms of PTSD and psychological distress are comparable to those reported by refugee and conflict-affected populations in many other countries worldwide.20 Nevertheless, a number of refugees indicated that in spite of their symptoms, they made efforts to continue working and interacting socially with their compatriots. This commitment to maintain their level of functioning may account in part for the relatively low correlation between mental health symptoms and the days-out-of-role index.

The limitations of the study are the small sample size and issues relating to its representativeness. Privacy considerations limited us in gathering sensitive data such as the actual dates of arrival of refugees in Australia. The sample was restricted to refugees in Australia, so the prevalence of trauma and mental health symptoms cannot be generalised to the whole population of West Papua. We do not know if non-participants differed from respondents on key indices of trauma and mental health, a potential source of bias. In addition, we cannot dismiss the possibility of reporting bias given that several of the participants had taken a stand against the occupation of West Papua. We did not recalibrate the HTQ or K10 to norms for this culture, so international cut-off scores should be regarded as only broadly indicative of incremental levels of distress.

In summary, our findings shed light on the extent and nature of reported human rights violations and other traumatic events and consequent mental distress among West Papuan refugees resident in Australia. The results are particularly concerning given recent media reports that there are ongoing human rights violations occurring in a territory that is one of Australia’s closest neighbours.5 The data will be of value in alerting clinicians treating West Papuan refugees to underlying trauma and mental distress in this population that may not be readily revealed. More broadly, our research may provide impetus to initiating further and larger studies investigating the range of traumas and mental health problems of West Papuans both inside the territory and living as refugees in other countries.

Reported frequency of potentially traumatic events (PTEs) and severe traumas before migration, and living difficulties after migration

n

Premigration PTEs


Family members sick and unable to get medical treatment

40

Lack of food and water

39

Lack of access to medical treatment

38

Forced separation from family members

35

Witnessing murder of family or friend

34

Disappearance of family member

33

Lack of shelter

31

House burnt down by Indonesian militia

29

Physical assault

27

Experience of combat situation

26

Witnessing murder of stranger

25

Torture

21

Imprisonment

10

Serious injury

9

Postmigration living difficulties

Separation from family in homeland

43

Worries about family in homeland

43

Unable to return home during emergency because of ongoing conflict

41

Communication difficulties

35

Poor access to favourite foods

26

Discrimination

24

Loneliness and boredom

21

Fears of repatriation

19

Difficulties in employment

18

Isolation

18

Poverty

16

Difficult work conditions

14

Delays in processing asylum application

13

Limited work rights

8

Difficulties in interviews with immigration officials

7

Limited government assistance in welfare

7

Worries about lack of access to treatment for health-related problems

6

Poor access to dental care

6

Poor access to counselling services

5

Being in detention

3

Conflict with immigration authorities

3

Poor access to long-term medical care

3

Poor access to emergency medical care

2

Limited support from charities or non-government organisations

1

Subacute care funding in the firing line

Recent enhancements to subacute care services are threatened due to the uncertain future of federal–state funding agreements

The term “subacute” was coined for use in Australia 21 years ago to describe health care where the patient’s need for care is driven predominantly by his or her functional status rather than principal diagnosis.1 Subacute care includes rehabilitation, palliative care, geriatric evaluation and management, and psychogeriatrics. Rehabilitation represents more than 50% of all subacute hospital care in Australia.2

The past two decades have seen slow growth in subacute care. However, the public sector was given substantial momentum in recent years through two National Partnership Agreements (NPAs) between the federal government and the state and territory governments, negotiated by the Council of Australian Governments (COAG) — the Hospital and Health Workforce Reform (HHWR) NPA and the Improving Public Hospital Services (IPHS) NPA. Both NPAs aimed to “improve efficiency and capacity in public hospitals”.3

The 5-year HHWR NPA was signed in 2008 and, of the total funding of $3042 million negotiated under this agreement, $1383 million was provided by the federal government to the states and territories. This consisted of $133.41 million for activity-based funding (ABF) infrastructure, $500 million for subacute services, and $750 million for “taking the pressure off public hospitals” by addressing waiting lists and times.3 The $500 million allocated for subacute services was provided in one instalment, with its distribution to all states and territories based on age-weighted population.

The IPHS NPA was signed in 2011.4 It consisted of total funding of $3373 million, including up to $1623 million for new subacute beds. This was allocated over 4 financial years — $233.6 million in 2010–11, $317.6 million in 2011–12, $446.5 million in 2012–13, and $625.5 million in 2013–14.

Box 1 shows that activity increases in subacute services attributable to the HHWR NPA occurred in all states and territories. More than 600 000 extra bed-day equivalents (inpatient days plus ambulatory care equivalents) were provided in 2011–12 than in the baseline year of 2007–08, representing 25.9% growth across Australia.5 The target in the HHWR agreement was a 5% increase in each of the 4 years — this was exceeded by the end of Year 3 (2011–12).

The 2009 report of the National Health and Hospitals Reform Commission (NHHRC) stated that:

There is … an urgent need for substantial investment in, and expansion of, sub-acute services — the ‘missing link’ in care — including a major capital boost to build the facilities required.

It also recommended the introduction of clear targets to increase the provision of subacute services, and stated that “Incentive funding under the National Partnership Payments could be used to drive this expansion in sub-acute services”.6

The NHHRC recommended investment beyond the targeted 5% increase per year under the HHWR agreement, recognising that much of this 5% increase would only account for extra demand associated with population ageing and growth. Indeed, as shown in Box 1, most states and territories have delivered much greater than 5% growth, with South Australia and Queensland reporting increases of 50% and 43%, respectively.5

The HHWR agreement made provision for a review of progress “in respect of achieving the agreed outcomes”, to occur in July 2011.3 However, apart from the annual reports of the states and territories describing the services developed under the NPA, and the reporting of activity measures, there is no evidence that any review of the NPA on a national basis has occurred. Further, although the NPA specifically describes the role of the federal government as including provision of funding support for “research into best practice models of care” and funding and providing “national coordination of the initiative [and] monitor[ing] performance”,3 no provision was made for funding to continue beyond the term of the NPA, nor for a formal evaluation of outcomes at its conclusion. Consequently, the effectiveness of the developed services cannot be fully assessed because they have not been subjected to rigorous evaluation. Although formal outcomes cannot be reported, examples of rehabilitation programs funded by the HHWR agreement are given in Box 2.

In contrast, the IPHS agreement specifies that an evaluation framework will be developed and that a review of the agreement will be completed, with a decision by COAG by December 20134 — although no details have been released to date.

These two agreements have provided public hospitals with unprecedented opportunities to develop new inpatient and ambulatory rehabilitation services and to expand existing services. These new and expanded services have dealt with previously identified deficiencies, especially the need for early rehabilitation in the acute care setting and increasing the intensity of therapy within rehabilitation settings.810 Public hospitals have been able to develop better rehabilitation capital infrastructure and better meet the growing need for rehabilitation, particularly among the ageing population. Between them, these two agreements represented a turning point in the development of public sector rehabilitation services across the country.

There is growing international evidence showing improved patient outcomes from the provision of more intense therapy (ie, therapy “dose”) in the rehabilitation setting, as well as showing improved efficiency.8,9,11 In the United States, where therapy of 3 hours per day for a minimum of 5 days per week is mandated in inpatient rehabilitation,9 length of stay for patients undergoing stroke rehabilitation is shorter, and the rate of attainment of functional gain is higher, than in Australia.12

More intense therapy should result in more efficient use of rehabilitation beds if length of stay can be reduced as a result. This is because the cost of providing extra therapy is relatively low compared with the high fixed costs of running an inpatient bed.

With the HHWR NPA ending on 30 June 2013, many of these new and expanded rehabilitation programs will cease. Staff are already seeking alternative employment, and programs are beginning to wind down. The fact that many health services across the country will now be closing down rehabilitation and other subacute initiatives that were funded under this NPA suggests a lack of planning by the federal, state and territory governments for what would happen after the HHWR NPA ends.

Development of subacute care must continue if Australia is to keep pressure off the acute hospital system and deal effectively with population ageing. However, in our opinion, the lack of requirements for rigorous evaluation of services developed with HHWR NPA funding, which could have provided a basis for ongoing funding if the requirements were met, is not justifiable.

Even if these programs demonstrate system-wide efficiency gains, this does not free up resources; rather, it increases capacity. As such, it would be difficult for state and territory governments to continue to fund successful programs out of existing resources, unless other programs were cut. The new ABF arrangements are not sufficient to pick up where the HHWR agreement has left off, not least because federal growth funding does not begin until 2014–15.13

At the system level, the sudden closure of rehabilitation and other subacute services will have flow-on effects to the acute care system, as it will increasingly have to manage patients who would otherwise have been referred to rehabilitation. The net effect is likely to be that the length of stay in acute care will increase, along with bed occupancy and waiting times.

1 Reported increase in subacute care services under the National Partnership Agreement on Hospital and Health Workforce Reform, by state and territory*

Jurisdiction

Services in 2007–08 (baseline)

Services in 2011–12

Increase (%) in 2011–12 compared with baseline


New South Wales

679 048

813 283

134 235 (19.8%)

Victoria

786 648

933 930

147 282 (18.7%)

Queensland

290 368

414 531

124 163 (42.8%)

South Australia

197 583

296 604

99 021 (50.1%)

Western Australia

511 498

658 781

147 283 (28.8%)

Tasmania

46 815

56 243

9 428 (20.1%)

Australian Capital Territory

62 745

68 038

5 293 (8.4%)

Northern Territory

11 227

14 261

3 034 (27.0%)

All

2 585 932

3 255 671

669 739 (25.9%)


* Compiled from the individual state and territory government reports submitted to the Steering Committee for the Review of Government Service Provision (for Schedule C of the National Partnership Agreement on Hospital and Health Workforce Reform).5

2 Examples of rehabilitation programs funded by the National Partnership Agreement on Hospital and Health Workforce Reform

  • At St Vincent’s Hospital in Sydney, existing services were enhanced and two new services introduced: rehabilitation in the home, and a mobile rehabilitation team. The latter provides rehabilitation within 3 days of acute admission in parallel with acute care. The program targets young disabled patients for whom there are few community services. Hospital length of stay was reduced and patients avoided inpatient rehabilitation, instead accessing ambulatory programs after discharge.
  • In South Australia, large investments were made in home and day rehabilitation services, including substantial investments in Whyalla, Mt Gambier and Berri. The Women’s and Children’s Hospital in Adelaide is now able to provide multidisciplinary community services, allowing access to community-based rehabilitation for 50 children who have had complex surgery, as well as the establishment of a state-wide hip surveillance program for children with cerebral palsy.
  • The South Eastern Sydney Local Health District (SESLHD), one of the largest health districts in New South Wales, focused on increasing intensity of therapy in inpatient rehabilitation and developed acute rehabilitation teams in acute hospitals. The SESLHD has evaluated the outcomes of its enhanced rehabilitation services and reports a 13% reduction in the average length of stay, improved speed of functional gain, and more than 130 avoided rehabilitation admissions annually.7

Traditional healers help close the gap

IN 2009, THE ROYAL Australian and New Zealand College of Psychiatrists awarded the Mark Sheldon Prize for Indigenous mental health to ngangkari (traditional healers) Andy Tjilari and Rupert Langkatjukur Peter. The two were further honoured in 2011 by the World Council for Psychotherapy with the Sigmund Freud Award (bestowed by the City of Vienna, Austria). The awards recognised their distinguished contributions in mental health to the Aboriginal communities of Central Australia.

Traditional healers of Central Australia celebrates the important work done by these and other ngangkari. It is a rich compilation of stories told by the ngangkari themselves along with artwork and photographs of Central Australia.The tales told by a number of male and female ngangkari reflect their life and cultural experience with respect to their careers as traditional healers within their Aboriginal family and community. The book includes a general discussion of the work of the ngangkari as well as specifics on how they approach topics such as grief, death and dying, substance abuse, mental illness, and the way they work with conventional health services. The services the ngangkari offer to these communities are often conducted in coordination with formal clinical mental health service provision.

This beautiful and insightful work will give the interested reader a window into a cultural experience of healing that is a continuing vital element of the health of the Aboriginal communities in Central Australia. In the ongoing efforts to Closing the Gap, this book is a reminder that solutions to health may be assisted through the wisdom of local people and communities in coordination with the “evidence” that is so prominent in the discussions about health service delivery today.

It’s time to examine the status of our undergraduate mental health curricula

To the Editor: Review of undergraduate mental health education is timely, given the growing disease burden of mental disorders and the need to better equip doctors for their central role in treatment. Curricula should prepare all doctors with competencies in recognising and treating mental health problems,1 because these occur frequently in patients across all branches of medicine, leading to poorer outcomes.2 Curricula should also prepare a minority of doctors for specialist psychiatry training.1

Review of practices is particularly pressing in Australia, where current medical school expansion provides critical opportunities to influence many training doctors’ competencies. Despite this expansion, published reviews and curriculum models are notably lacking. Australian medical schools, unlike those of other countries, have yet to agree on a core curriculum in undergraduate psychiatry, and delivery, content and assessment vary widely.3 These factors increase the probability of isolated curriculum development and inefficiency in preparing doctors with core skills. The Royal Australian and New Zealand College of Psychiatrists has called for greater collaboration across medical educators to develop core psychiatry curricula.1

A strategic curriculum requires learning outcomes that move beyond traditional psychiatry competencies in mental status examination, to include preventive health care as well as key attitudes, knowledge and skills needed to equip future doctors to treat mental illness. Chronic challenges also require consideration — these include difficulty in recruiting psychiatrists, lack of clinicians for teaching, and stigma towards psychiatry as a specialty and towards those with mental disorders. High-quality, multidisciplinary, multi-setting teaching may boost teaching resources, expose students to first-line psychological interventions and sensitise them to early-stage presentations. Additionally, with current concerns over the mental health of doctors, medical education provides opportunities to better equip doctors to take care of their own wellbeing.

There are calls to allocate a third of medical school curriculum time to teaching about brain and mental disorders, proportional to their disease burden.4,5 We estimate that the current proportion in Australia is far lower. In 1999, an Australian study found inconsistency among medical schools, and an overall average of 416 hours psychiatry teaching.6 We have been unable to locate published figures on the percentage of total teaching hours allocated to psychiatry in Australian medical schools. More recent, and proportional, figures are needed.

Current challenges are to achieve consensus on core mental health curricula across Australian medical schools, and to ensure adequate curriculum time to enable updated learning outcomes. Publishing and critiquing our approaches to curriculum delivery will facilitate reform.

The boy who didn’t cry wolf

Someone once told me that during his life, Winston Churchill would often refer to his depression as a “black dog” — a vile, loathsome creature that would shadow every decision and thought in his mind. But to me,
it was not just a dog, but something more sinister and predatory.

The beast followed me in the same way that a lapdog would follow its master, though there was no doubt of who was in charge. Behind every thought, decision and doubt in my mind, the black dog would be not too far away, waiting for a moment of weakness. Feeding off my shame, regret and self-loathing, its hunger knew no bounds and it could smell the fear that seeped from my skin.

For most of my adolescent years, that’s what it was like living with my depression. Every day was a new trial for me to fail and a new reason to undermine my existence. No matter what I did, no matter how hard I worked, I would always come home beaten and shamed. I was constantly making mistakes and no matter how trivial they were, I always punished myself. Every transgression I made was
a constant reminder of how worthless I was.

I never felt more alone than I did during those years. While my peers enjoyed themselves by going out, playing sports or singing in musicals, I spent my breaks eating my lunch alone. I always compared myself to them, asking myself why I couldn’t be like them. Each time, the conclusion was the same; it was because they were normal and I wasn’t. I felt there was something wrong with me, something I couldn’t fix. It was a period of time in which I felt my life was spinning out of control and my sanity was slowly unravelling.

The only thing keeping me alive was my desire to do medicine. Even before I met the black dog, becoming a doctor was all I ever wanted. To work in a craft that was centred around people and their ability to care. It was my calling in life and it was something that I needed to do. But most importantly, it allowed me to push past my depression and survive. No matter how hard things got, I had the strength to continue. I wanted desperately to speak to the school counsellor and confide in her all the pain and misery I was feeling. Maybe there was a cure. I owed it to myself to try. But what would happen if people found out that I was seeing her? What if my peers thought I was insane? The disgrace and humiliation I would feel if everyone knew would be too hard for me to handle. No, I decided. It was
my burden to bear and no one else needed to find out.

It wasn’t long before I tumbled. Months passed, the days became harder for me to bear and my depression deepened. As life continued and my peers moved forward, I was left behind, forgotten. It was as if everyone was in on a big secret that I was not privy to. The cruel isolation wreaked havoc on my self-esteem, pushing me further towards the brink of insanity. As my mind unravelled, my body ached with constant agony.

And then everything became too much. I felt numb and sick at the same time. Waves of nausea, spite and humiliation washed over me as all my mistakes flashed before my eyes. My breathing became laboured and what little tenacity I had left crumbled. I had finally convinced myself that I was a complete and utter failure. I wept. While I sobbed, I wondered what it was like to feel normal and why I lived a cursed life. I pleaded with the Almighty for sweet relief, one way or another. I didn’t care anymore, I just wanted out. As the depression took hold, I reached the chasm’s edge. One step and I would be committed forever. I asked a God I didn’t believe in to give me a break.

To this day, I am thankful for what happened next. After I confessed everything to the counsellor, she helped me realise that no matter how alone I felt, I had my family, my friends and the school to stand by me. That this unbearable agony
I was feeling was common. That people do care. It was something I needed to hear. I was quickly referred to a psychologist for further treatment and I began acceptance and commitment therapy, where I learnt how to acknowledge my faults and move on with my life. Just sharing my problems with someone else and feeling as if they cared was enough to relieve my grief. The pain and doubt that used to hound my every move had less of an impact now. With each session, I could feel the dog — my dog — being pushed further away until it was out of sight.

During the course of the next few months, I was able to complete my final year and secure an interview for medicine. As the date of my interview approached, I became nervous and anxious but I strengthened my resolve. It was my only chance to rectify what had happened to me and I wasn’t going to throw it away. When the day came, I gave it my all.
I talked about why I loved medicine and how I couldn’t see myself doing anything else. I showed them the passion I
had for the profession and the drive necessary to succeed. Afterwards, I was able to rest knowing that I did everything I could. My biggest fight was over.

One month later, I received a call that I had started to believe would never come. I was offered a place to study medicine. It was as if a burden was lifted off my chest. I finally had what I so dearly coveted. It made me realise that anything was possible. That I could live again. Despite being harder than anything I had ever done, studying medicine was the best thing that ever happened to me. I was no longer held back by the expectations that others had of me and was able to become whoever I wanted to be.

That said, I still needed to control my depression. At times, I could feel it edging back into my life and I fought to keep it in check. It was the little things, like new experiences and social pressure, that I struggled with. However, the hardest part was learning about depression at university. Learning about its causes and symptoms made me relive the trauma
I went through. But I always remembered what my life was like before medicine, and how grateful I am for my life now.

Despite my terrible ordeals, I feel that my depression has made me more empathetic. As I remember my clinical experience as a patient, I find it easier to understand what the patient is going through. This recognition allows me to identify with the patient and develop rapport. I know that the dog is not gone forever and I still have bad days. But for the first time in my life, I think I can handle it. I am ready for the next step and this time I’m not alone.

The case for CBT over antidepressants

THIS BOOK is by a doctor with an abiding interest in the philosophy of medicine. Paul Biegler is an Australian Research Council Postdoctoral Fellow at the Centre for Human Bioethics, Monash University, and a recipient of the 2011 Australian Museum Eureka Prize for Research in Ethics.

The book describes the therapeutic use of antidepressant medication (ADM) versus cognitive behaviour therapy (CBT), and concludes that it is unethical to provide the former as a first option to all patients suffering from depression. This is based on the author’s view that ADMs do not promote autonomy nor change vulnerability, whereas CBT enhances resilience and changes cognitive vulnerability to depression.

However, Biegler does not sufficiently discriminate between different types of depression. He acknowledges that some types may require ADMs to allow patients to process information, but underplays this point. In these cases — such as melancholic and psychotic depression, some medical illnesses and, arguably, depression related to serious personality disorders — ADMs can improve cognition and judgement to enable sufferers to make informed choices, while ongoing ADMs and psychotherapy may be necessary to decrease vulnerability and promote autonomy. And although Biegler talks about precipitating stressors, he doesn’t acknowledge the place that environmental stressors can play in melancholic depression, often a point of confusion.

The case is meticulously built up through progressive chapters. It is a thought-provoking book, but not one to skim through or dip into. It is recommended for people with a serious interest in the area. It addresses important issues and is timely as the costs of providing CBT have become less of an issue with the advent of excellent self-help books and internet programs, and greater access to clinicians providing CBT. It will be of interest to general practitioners, psychiatrists, psychologists and people involved in health economics and health planning, albeit with the aforementioned caveats in mind.

What can and should we predict in mental health?

David Foster Wallace, in his novel Infinite jest (1996), described the impulse for a person at the point of suicide as like that of jumping from a burning high-rise building. “Their terror of falling from a great height is still just as great as it would be for you or me … [but] when the flames get close enough, falling to death becomes the slightly less terrible of two terrors.”

This is one way to conceptualise the situation for at least 2273 people in Australia who committed suicide in 2011. To understand how to prevent such deaths, we need to know — following Wallace’s metaphor — the point at which an individual will choose to jump rather than face the flames. Can we predict this? And to what extent can we predict any outcomes in psychiatry?

Much effort has gone into trying to identify patients who are at particular risk of completed suicide within a year after presenting in psychological crisis or after attempting suicide. Ryan and Large (doi: 10.5694/mja13.10437) argue that predicting the short-term risk of suicide for such patients is not possible given the lack of identified risk factors that sufficiently discriminate between those who successfully suicide and those who do not. In addition, many people without the factors suggested as being associated with increased risk go on to attempt suicide. In this light, the authors recommend renewed, close clinical engagement with each patient’s situation and appropriate tailored intervention.

While prediction of suicide risk in individuals may be problematic, at a population level, suicide prevention has for some time been integral to mental health policies. Christensen and Petrie (doi: 10.5694/mja12.11793) outline six recommendations that should be part of any suicide prevention strategy. These revolve around targeting interventions, addressing risk factors, providing online resources and addressing gaps in community knowledge and discussion.

There have been recent moves to encourage more public discussion about suicide. But, as Fitzpatrick and Kerridge argue (doi: 10.5694/mja12.11540), community discussion should not simply be equated to media reporting of suicides. While there is some evidence of an association between increased media reporting and the incidence of attempted or completed suicide, they argue that this should not cloud strategies to encourage general community discussion about how suicide affects us all. There is reason to hope that talk beyond that filtered through the media prism will more effectively address the social and cultural factors that relate to suicide.

The possibility of identifying children at high risk of emotional and behavioural problems has been the basis of the expansion of the voluntary Healthy Kids Check for 3-year-olds to include social and emotional wellbeing. Will such assessment predict later problems? Daubney and colleagues (doi: 10.5694/mja12.11455) argue that although early intervention in this age group does have benefits, many children with problems go undetected, and none of the currently available assessment instruments are suited to screening. In addition, no symptom clusters are predictive of later psychopathology, and there are potential problems with overdiagnosis and overmedicalisation.

From the outsider’s perspective, there often seems to be more bad than good news in mental health, with controversy, lack of progress and confusing evidence. However, there are bright spots, even in those conditions previously thought to be intractable. Grenyer (doi: 10.5694/mja13.10470) shows that the prognosis for borderline personality disorder has significantly improved, with effective psychotherapies and support to patients and their family members offering real hope for more stable and productive lives. This should also lower sufferers’ risk of suicide, which, either attempted or completed, is a well known feature of the disorder.

Twelve years after the publication of Infinite jest, David Foster Wallace committed suicide on a background of worsening, difficult-to-treat depression. His strangely prescient metaphor of flames rising up a burning building reaches beyond literary dilettantism. Perhaps, in the context of suicide, we need to ask ourselves whether we know what causes the fire, and how much we understand the person poised in terror at the top.

Suicide risk assessment: where are we now?

A definitive way to identify patients who will suicide remains elusive

Patients who present in psychological crisis or after a suicide attempt are more than 50 times more likely than the general population to die by suicide in the following year.1,2 They require careful assessment and management. Numerous publications suggest, and some health department policies insist, that such patients should undergo a “comprehensive suicide risk assessment” in addition to a standard clinical assessment.3,4 Although most guidelines warn that suicide risk assessment does not substitute for clinical judgement, almost all also include long lists of patient characteristics that are claimed to enable identification of those patients at high risk of suicide. These lists are often fashioned into ad-hoc scales that purportedly stratify patients into categories of low, medium and high risk. However, it is simply not possible to predict suicide in an individual patient, and any attempt to subdivide patients into high-risk and low-risk categories is at best unhelpful and at worst will prevent provision of useful and needed psychiatric care. Here, we explain why this is so and outline what we believe clinicians should do instead.

Although patients presenting after suicide attempts or in crisis have a greatly increased probability of eventual suicide compared with the general community, fewer than one in 200 will actually die by suicide in the next 6 months.1 Suicide risk assessment is usually suggested as a way of determining who among these presenting patients should be offered different or more intensive treatment. However, the low base rate of completed suicide, combined with the lack of defining characteristics of people who proceed to suicide, makes this task impossible. Any useful further risk assessment would need to rely on a risk factor or a combination of risk factors that are consistently present, can be reliably assessed, and are very strongly overrepresented in the few people who do eventually suicide and yet rare or absent in those who do not. There is no evidence that such a risk factor or combination of risk factors exists. In 1983, the author of a large, well conducted prospective study of suicide lamented that “we do not possess any item of information or any combination of items that permit us to identify to a useful degree the particular persons who will commit suicide”.5 Thirty years later, nothing has changed: a similarly large and methodologically sound prospective study of psychiatric inpatients found that only 12% of suicides occurred among high-risk patients, and that fewer than one in 400 high-risk patients suicided.6,7

The list of generally accepted suicide risk factors is long and includes male sex, old age, divorce, medical illness, substance use, past suicide attempts and guilt. The most often cited risk factor for future suicide is expressed suicidal ideation.3,4 However, among psychiatric patients, expressed suicidal ideation does not discriminate between suicide completers and non-completers.8 Presumably this is because thoughts of self-destruction are very common in this group and because many people intent on suicide will not disclose that intent. Other intuitively appealing candidate characteristics include depressed mood and hopelessness. These, too, are almost universally found in the risk factors nominated in suicide risk assessment guidelines.3,4 However, not only are they very common in patients presenting with psychological problems, but most people with depressed mood will also feel hopeless, and vice versa; therefore, the combination of these risk factors offers little additional discriminative ability.

In recent decades, an enormous amount of research has gone into finding the magic combination of risk factors that acts as a sensitive and specific discriminator.5,6,9,10 Almost every study of completed suicide is retrospective, examining dozens, sometimes hundreds, of characteristics recorded in the medical records of both patients who suicided and controls, searching for factors or combinations of factors that were present more often in the patients who died.11,12 Such studies are likely to yield chance findings that appear to be significant, and they could identify some potentially reproducible associations with suicide. However, meta-analysis finds contradictory results between studies, leaving very few candidate risk factors among all the studies examined.1113 Moreover, even a combination of reproducible risk factors still fails to provide a useful way of identifying high-risk patients. We examined studies investigating risk factors for completed suicide within a year of inpatient psychiatric treatment. Even making assumptions that optimise the power of suicide risk assessment, we estimated that while some patients could be categorised as “ultra-high-risk”, as few as 3% of these would go on to suicide in the year after discharge. Meanwhile, about 60% of people who did eventually suicide during the same period would have been categorised as being at lower risk.11

In original research and in meta-analyses, no generally accepted risk factors individually or in combination provide any useful way of further categorising patients who present in crisis. We understandably want to identify those who will later kill themselves — but this is simply not possible.

Here and now, clinicians should not be conducting “comprehensive suicide risk assessments”. They should be conducting comprehensive clinical assessments of each patient’s situation and needs. Suicidal ideation, for example, is not useful as an indicator of the likelihood of future suicide, but it is an invaluable sign of a person’s inner despair. So-called risk factors like depression, hopelessness and substance misuse are far too common and non-specific to be useful indicators of suicide risk, but they can be seen as symptoms of mental illness and important pieces of a revealed inner life that, taken together, give us a better understanding of the individual person and guide us towards what needs attention and discussion.

This is not to say that we should abandon patient safety. Bolstering family or social support, restricting access to lethal methods of suicide or making a crisis plan are steps that should be taken for all patients in psychological crisis — not just those whom we imagine might be more likely to suicide than others.

We cannot prevent tragedy by trying to identify those few souls who will be consumed by it. We must instead gather a comprehensive picture of each individual patient, and use this to tailor optimal management for the patients and families needing our care.

Clinical staging for mental disorders: a new development in diagnostic practice in mental health

Matching the timing and intensity of interventions to the specific needs of patients

The release of the fifth edition of the Diagnostic and statistical manual of mental disorders (DSM-5)1 classification system, scheduled for May 2013, will create controversy due to the expanded range of problems now classed as mental disorders. However, in our view, it is unlikely to improve clinical care. The ultimate test for any system of diagnosis is its clinical utility. That is, does it assist clinicians to improve their selection or sequencing of treatments and enable them to make more accurate prognostic statements in keeping with newer concepts and knowledge? We propose that a refinement to traditional diagnostic practice — clinical staging — is more likely to improve clinical care and inform future research into the causes of mental disorders.25 Further, clinical staging draws the practice of clinical psychiatry closer to general medicine, especially with regard to chronic disease management.

In the past century, a major challenge for psychiatry was a lack of international consensus on diagnostic categories. For many decades, DSM and other international systems strived to enhance the reliability of psychiatric diagnoses. Recent field trials for DSM-5 indicate that acceptable reliability remains elusive.6 However, even diagnostic categories with modest reliability have limited validity. A major weakness is that the diagnoses refer to “categorical phenotypes” that fail to address critical differences in clinical presentations associated with age of onset or stage or course of illness.25 Most criteria reinforce categories derived from observations of middle-aged people with long-established stable illnesses, who have often been treated extensively by specialised mental health services. Inevitably, these map poorly onto earlier, less specific clinical presentations seen in general outpatient, primary care or community settings. They also presuppose that independent causal pathways exist for each clinical phenotype — an assumption that is not supported by contemporary family, genetic, neurobiological or risk factor research.2,3

What are the alternatives? Twenty-first century health care places an increasing premium on personalised or stratified medicine, with the goal of delivering more tailored treatments. Consequently, there is increasing international support for applying the concepts of clinical staging, particularly for adolescents and young adults with significant mood or psychotic disorders.4,7 Given that 50% of major mental disorders begin between 15 and 25 years of age, a focus on enhanced care and novel clinical research during this critical developmental phase is a timely test of this framework.5,8,9

At its core, the clinical staging model recognises the full spectrum of illness experience. For example, for ischaemic heart disease, the staging model identifies individuals at risk (because of genetics, lifestyle or other risk factors), those with symptoms or related syndromes that suggest illness progression (eg, hypertension, metabolic syndrome) and those with overt evidence of cardiac disease (eg, angina). Further, treatments differ at each point on the illness continuum, with interventions with lower risk–benefit ratios being provided at earlier stages (ie, dietary change or increased exercise for the at-risk stage, and more complex medical treatments for later stages). In psychiatry, this approach also differentiates at-risk individuals (stage 0; eg, family history of severe mental disorders) from those with early subthreshold or attenuated syndromes (stage 1; eg, brief episodes of psychotic or hypomanic symptoms) from those meeting threshold diagnostic criteria (stage 2) or with established or persisting illness (stage 3). Importantly, staging suggests that disorders emerge via a limited set of overlapping and fluctuating symptom clusters (microphenotypes), some of which resolve, while others progress and stabilise into clinical presentations (macrophenotypes) that ultimately resemble more traditional diagnoses.25 The clinical staging model is compatible with clinical reality and can be tested for reliability, predictive validity and patterns of association with developmental epidemiology and neurobiological markers.7,10

For mental health, the critical challenge is to help all patients entering care by reducing symptoms, promoting recovery and quality of life, and preventing progression to premature death or further disability.8 The means for achieving these outcomes may be better assisted by clinical staging rather than by prematurely assigning categorical diagnoses to an evolving clinical profile. Also, rather than encouraging early use of medical interventions, the specific intent of staging models is to mimic the disease-management principles now widely applied in general medicine, which enable clinicians to target stage-appropriate interventions from early in the course of illness. Thus, for most young people entering care before the development of full-blown mood or psychotic disorders, the emphasis is on providing relevant information and psychological strategies (including e-mental health), reducing known risk factors (notably alcohol and/or substance misuse), minimising self-harm, promoting resilience, encouraging self-monitoring and reviewing longitudinal course.8 In future, low-risk, evidence-based neuroprotective strategies (which are behaviourally, psychologically or medically based) may also become available.

Clinical staging revolutionised general medical practice, focusing attention on the benefits of intervening earlier in the course of life-threatening illnesses. For clinical psychiatry, it could enable appropriate matching of the timing and intensity of interventions to the specific needs of help-seeking individuals. Also, staging sheds light on the evolution of symptom networks and syndromes,5 and enhances our chances of validating specific pathophysiological pathways and of introducing more objective measures of illness risk, onset and progression.2 In medicine, the successor of clinical staging was clinicopathological staging. In the future, we hope that clinical psychiatry will also be based on the combination of objective markers of illness course and enhanced clinical care.

Improved prognosis for borderline personality disorder

New treatment guidelines outline specific communication strategies that work

Until recently, borderline personality disorder (BPD) was considered to be a chronic ongoing condition with a poor prognosis and no effective treatment. However, the tide of research and clinical opinion has turned, and the prognosis for this disorder is now considered improved for most patients if one of a number of effective evidence-based treatments is implemented.1 On 15 March 2013, the National Health and Medical Research Council (NHMRC) issued the Clinical practice guideline for the management of borderline personality disorder, which outlines best practice.2

BPD was first described in 1938 when referring to a recognised group of people who were thought to be on the “borderline” between neurosis (depression and anxiety) and psychosis (schizophrenia).3 The term “borderline personality disorder” became accepted medical terminology in 1980 with its inclusion in the third edition of the American Psychiatric Association’s Diagnostic and statistical manual of mental disorders.2 The prevalence of BPD in the community is between 1% and 4%, but at least one-quarter of all mental health presentations to emergency departments or inpatient mental health units are people with a personality disorder.4

People with BPD may try to avoid abandonment by others, and they may have intense and unstable relationships, and feelings of insecurity and emptiness. They have difficulty with emotional regulation, manifesting as low mood, sudden anger, irritability, detachment and impulsivity in activities such as using drugs or engaging in risky sexual activity. The illness may include both anxious and labile mood, along with occasional more severe components such as transient stress-related psychotic-like symptoms, including paranoid delusions or hallucinations.

BPD is currently understood to be caused by a combination of biological factors (eg, genetic interpersonal hypersensitivity) and early environmental influences (eg, adverse childhood experiences).5 It cannot be said that BPD only derives from post-traumatic stress.6 Therefore, in view of current understanding, it is not “the person’s fault” or a result of “personal weakness” or “being manipulative” — labels that are sometimes prompted by the negative reactions of health care workers to people with the condition.

Clinicians are familiar with the problem of young people who self-harm, or who present as needy and impulsive, and who have a history of presenting to emergency departments in crisis. Managing these people can be a challenge, in part because they often have difficulty describing themselves.7,8 Such people can present sometimes as aggressive, entitled and disinhibited, but at other times as needy, timid and compliant. It is important to recognise that self-harm does not indicate BPD if it is the only presenting problem.

Psychological therapies are the treatment of choice. Over 25 randomised controlled trials have now demonstrated the benefits of specific types of psychotherapy that are known to be effective, such as dialectical behavioural therapy, mentalisation-based therapy, and transference-focused therapy.3 An important factor that is common to all effective therapies is the use of a specific form of communication focused on discussing current relationship difficulties and methods of problem solving with patients, so that they are able to choose healthier relationships and maintain study and work.9 Clinicians should avoid discussing past traumas in the early stages of treatment, as this has rarely been found to be helpful and usually worsens patients’ mental health and increases their risk of suicidality. Unlike depression, anxiety or schizophrenia, there are currently no approved medications that are “on label” indicated for the disorder, with Recommendation 11 of the NHMRC guidelines stating that “medicines should not be used as primary therapy for BPD, because they have only modest and inconsistent effects, and do not change the nature and course of the disorder”.2

Effective treatments aim to strengthen self-esteem, and use the therapist–patient or doctor–patient relationship to provide a “safe place” for the patient to discuss alternatives to destructive behaviour and relationship insecurities, with an unhurried, step-by-step “here and now” approach to improve daily functioning. One of the principles of the NHMRC guidelines is that to be effective, doctors should try to “act consistently and thoughtfully . . . to make sure the person stays involved in finding solutions to their problems, even during a crisis”.2,10 The availability of resources to help doctors, patients and their families and carers to understand and better respond to the condition is important; the NSW Health Project Air Strategy for Personality Disorders10 (www.projectairstrategy.org) referred to in the NHMRC guidelines is an example of such resources being made available in one place. People who suffer from the disorder almost always experience receiving a diagnosis as helpful, because it allows them and their families to understand that this is a recognised disorder and that there are good psychotherapies that provide hope.

A major focus of effective treatment is to support families, partners and carers of people with BPD.2 Because of the interpersonal nature of the disorder, families often feel burdened by their relative’s condition, and also need to learn effective ways to communicate and cope with living with a person with the illness. The doctor or therapist can encourage families to stay connected to the person with BPD, even though this may be stressful.10 Doctors and therapists have an important role in supporting both patients and families to get the help they need, and in providing education about the latest developments in our understanding of the disorder. Most of all, doctors and therapists are in a powerful position to give hope to those with the diagnosis, and to work to overcome the stigma and prejudice surrounding BPD. This is particularly important, as people with the condition are now known to respond well to new treatments.