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Health services administration

Ethics Letter 15 May 2023 Free

Access to voluntary assisted dying in Australia requires fair remuneration for medical practitioners

To the Editor: Haining and colleagues discuss compensation for medical practitioners in supporting patients through the voluntary assisted dying process, which requires much time and effort.1 We want to inform you how the Netherlands, where euthanasia has been performed since 2002, has dealt with this challenge. A Dutch physician who performs euthanasia must evaluate whether a patient is suffering hopelessly and unbearably, is adequately informed, has no reasonable alternatives available, and is making a voluntary and well considered request. A second independent physician also needs to evaluate the patient, which often requires multiple house visits. Six weeks after the procedure, a review committee establishes whether all due diligence requirements were fulfilled. In 2021, 7666 people underwent euthanasia in the Netherlands, mostly performed by general practitioners for patients suffering from a malignancy.2 Everyone who lives or works in the Netherlands is legally required to have health insurance. Insurance companies finance the health costs through premiums and an income‐related contribution, collected through the government's tax on wages. On a side note: for religious reasons, it is possible to choose an insurance company that does not reimburse the costs of euthanasia or abortion. Every patient needs to be registered with a specific GP, who receives a registration payment every three months from the health insurer of between €18.76 and €51.86 (AU$30.37 and AU$83.96 at 3 April 2023), depending on age. When the patient visits the physician, an additional €11.51 (AU$18.63) is paid.3 However, as euthanasia is a time and effort consuming trajectory, the physician is entitled to additional compensation. Several home visits are required to investigate and explore the euthanasia request, for which the physician receives €88.85 (AU$143.84) per visit. On the day euthanasia is performed, the GP receives €269.99 (AU$437.09) from the health insurer. The second, independent physician receives €602.27 (AU$975.01) for their efforts. The pharmacist who prepares and processes the return delivery of the euthanasia drugs can invoice €274.00 (AU$443.58). Here, we have provided some insight into the compensations for physicians and pharmacists who facilitate euthanasia in the Netherlands, and we hope this can contribute to the discussion on the remuneration of this important work in Australia.

Stefan Leus · Jan Bollen

Mja2 51923
Infectious diseases Research 1 May 2023 Open Access

Mental health and wellbeing of health and aged care workers in Australia, May 2021 – June 2022: a longitudinal cohort study

Evidence-based mental health and wellbeing programs for workers in health care organisations are needed

Sarah L McGuinness · Owen Eades · Kelsey L Grantham · Shannon Zhong · Josphin Johnson · Peter A Cameron · Andrew B Forbes · Jane RW Fisher · Carol L Hodgson · Jessica Kasza · Helen Kelsall · Maggie Kirkman · Grant M Russell · Philip L Russo · Malcolm R Sim · Kasha Singh · Helen Skouteris · Karen Smith · Rhonda L Stuart · James M Trauer · Andrew Udy · Sophia Zoungas · Karin Leder

Mja2 51918
Health services administration Letters 17 April 2023 Free

Precision medicine in Australia: now is the time to get it right

To the Editor: O'Shea and colleagues1 have highlighted the importance of precision medicine and recognised that health care systems are struggling to adapt to new genomic innovations. New technologies are frequently distributed unevenly and follow socio‐economic gradients, and health care systems have a responsibility to ensure equitable access.2 In South Western Sydney, there is a significant population of culturally and linguistically diverse people whose genetic risk factors for cancer development and treatment are different to those of the greater Sydney population. Consequently, the Department of Anatomical Pathology at Liverpool Hospital has offered next generation sequencing (NGS), using the 50‐gene Oncomine Precision Assay (ThermoFisher Scientific) for multiple tumour streams, including non‐small cell lung cancer (NSCLC) and colorectal cancer. A nine‐month internal audit of 400 patients has found that 77% of patients with stage IV NSCLC and 82% of patients with stage IV colorectal cancer had at least one gene mutation identified using this panel. Currently, the European Society of Medical Oncology has put forward a clinical scale of actionability of molecular targets, ESCAT, to help clinicians understand the utility of genetic variations in cancer.3 The guidelines define mutations from tier I to tier X based on degree of actionability. The NGS results found that 56% of patients with colorectal cancer and 50% of patients with NSCLC had tier I mutations, defined as those with clear evidence of clinical actionability. Twenty‐one per cent of patients with colorectal cancer and 28% of patients with NSCLC had tier II or III mutations with potential actionability. In addition to providing access to standard of care treatments, NGS provides a means for patients to access novel clinical trials. In our cohort, about 45% of both NSCLC and colorectal cancer patients had additional mutations on the 50‐gene panel that are currently being investigated in early phase clinical trials. Standardisation and funding of testing across Australia is critical to prevent inequities of access to testing, especially in patients in South Western Sydney with lower rates of private health insurance, high rates of socio‐economic disadvantage and low rates of health literacy. Currently, there are a limited number of centres available in New South Wales to provide NGS testing and, thus, now is the right time to get it right for all Australians.

Udit Nindra · Abhijit Pal · C Soon Lee

Mja2 51887
Rehabilitation Perspectives 3 April 2023 Open Access

The NDIS at ten years: designing an equitable scheme for the next decade

As the NDIS turns ten, we must make changes to improve scheme equity The National Disability Insurance Scheme (NDIS) was created to provide reasonable and necessary supports for people with disability under the age of 65 years to live an included and meaningful life on an equal basis with other Australians. The mechanism for this is individualised support plans underpinned by personal budgets that are spent on services purchased from a social care market. Former Prime Minister Julia Gillard announced the scheme in 2012 and the national roll‐out, which began in 2013, was achieved in July 2020.1 The NDIS is a very significant social policy innovation and its importance for people with disability in Australia cannot be underestimated. For many people with disability, the supports provided through the NDIS have been essential to living an included life. The scheme was funded in part by an increase in the Medicare Levy, against which there was little initial protest.2 However, providing these essential supports has been more costly than originally anticipated by the Productivity Commission.3 The NDIS is expected to cost $50 billion annually by 2024–2025,4 which is higher than the annual budget for either Medicare or defence. Attention to the scheme costs has been mounting, along with attendant fears about cost‐cutting to plans.5 This has caused mistrust, with fear over cost‐cutting to and by the NDIS a factor in community rejection of the now cancelled “independent assessments”.6 Even with expanding costs there remains significant concerns about equity within the scheme, with some groups still failing to receive the services that they need in comparison with others. To address these and other concerns, such as access, market and workforce, the federal government has initiated an independent review into the NDIS. Who is in? Who is out? There are over 535000 NDIS participants compared with almost 4.4 million people with disability in Australia, including 2.4 million aged under 65 years,7 which means the NDIS can only ever be part of the national disability support landscape. Yet in the early days of its implementation, it became the default disability system as other existing disability supports and approaches were defunded or removed. These supports included successful programs such as Partners in Recovery, which was defunded when most existing participants were not eligible for the NDIS.8,9 This has led to a situation where the NDIS is, as Bruce Bonyhady, the original Chair of the National Disability Insurance Agency, calls it, an “oasis in the desert”,10 with scheme participants receiving support to a much higher level than non‐participants. This situation makes people currently eligible desperate to retain NDIS supports and others desperate to become eligible.11 A Tier 2 scheme was originally envisioned to provide referrals and community assistance so that people not eligible for individual NDIS plans could receive support. However, the Tier 2 scheme has not been effective in delivering this.10 Current NDIS participants are overwhelmingly young (under 18 years) and male, which is driven by the large number of participants with autism and developmental delay.12,13 Participants with a primary autism diagnosis comprise 30.9% of scheme participants, followed by intellectual disability (20.2%) and psychosocial disability (9.1%). Eighty‐nine per cent of men aged over 18 years have applications for access approved compared with 80% of women.13 Just 37% of NDIS participants are women — substantially lower than the 49% of people with disability aged under 65 years who are women.14,13 This raises concerns that the intersectional influence of gender might drive disparities in access.15 Concerns about utilisation and support Concerns have been raised about scheme access and utilisation of approved plans (ie, percentage of budgeted supports used), which are lower in some participant groups compared with others, resulting in inequity of access to necessary supports.16 Although utilisation is not a perfect measure because it relies on planning processes that may in themselves be inequitable, it is clear that utilisation differs by disability type; for example, people with psychosocial disability have an average plan utilisation of 53% compared with 70% for those with autism.17 A major factor in the disparity in plan utilisation is due to the failure of markets to function where participant needs necessitate more specialised supports, which come at higher costs to providers, and in areas where there are poor economies of scale.18,19 Plan utilisation is higher for people in metropolitan than regional and remote areas (eg, only 11% plan utilisation for people with psychosocial disability in the Far West region of New South Wales).20 Interestingly, some populations that are traditionally underserved in health and social care receive good access to the NDIS, with culturally and linguistically diverse people with disability having higher than average plan spending and utilisation.17 This may be a function of rurality, with most of this population resident in metropolitan areas.17 Differences in use of plans, for some groups of people with disability compared with others, underline the fact that the scheme functions better for people with support needs that are relatively straightforward and can receive support from less specialised, more generic services and support workers. In an exploration of plan utilisation by people with psychosocial disability, a 2022 study found that utilisation of plans is affected by both individual and broader systemic conditions, including available workforce.21 Workforce planning to ensure more equitable access for people with more complex needs is therefore one part of the strategy for addressing this deficit.22 Much of the NDIS workforce do not have specialised qualifications in disability, which makes them an easier workforce to come by and a workforce that is therefore cheaper for services to employ compared with experienced or qualified workers (and with wage costs reduced, enables easier profits). This can mean that the quality of support is lower even for those with lower support needs because the workforce may have limited knowledge of disability and have low expectations of what people with disability want and need to do, for example, beyond assisted showers, walks around the neighbourhood, and some social conversation. Participants prefer experience specific to their needs.23 Relevant experience does not necessarily come from training but may come from lived experience of disability and disability support, with many people prioritising interpersonal skills over qualifications in disability.24 Without an experienced workforce, people with complex language and communication disability (including one of the authors of this article with deaf‐blindness), for instance, will not have their needs understood and so remain marginalised. There is a fear that ill‐informed service providers sometimes act as gatekeepers denying supports that people with disability, the true experts, know they need: “They need to be able to have walked in our shoes”.25 These workforce deficiencies are structural problems enabled by deficiencies in the market structure that accompanies the NDIS and must be addressed to provide equity for people with disability.26 Aboriginal and Torres Strait Islander people with disability There are also cultural barriers to equity in the operation of the NDIS, with lower levels of plan utilisation in Indigenous people with disability.17 There are a number or reasons for this, including the number of Indigenous people living outside of major cities (56.8% v 31.6% non‐Indigenous) and in remote areas (9.8% v 0.8%).17 NDIS planning processes are fraught with challenges for Indigenous people living in regional and remote areas. The process of providing evidence of disability often causes significant stress and trauma.27,28 The principle and process of providing evidence is situated in a deficit model, requiring people to prove the experience of disability as a burden. This model of disability is the antithesis of Indigenous cultural ways of experiencing disability where disability is interpreted as part of the diverse human experience as opposed to a limitation or impediment.27,28 The NDIS is also designed on Western‐centric assumptions that all people with disability exist at the same starting line: house, shelter, food, family support. Many Indigenous people with disability are homeless, living in poverty or in overcrowded houses.29,30,31 To address equity for this group there needs to be Indigenous‐controlled service providers who generate whole‐of‐life case management to help Indigenous people with disability who are living in disadvantage understand and access the scheme.32 What next? Inherent in these tensions is a concern that a scheme that should be agnostic to diagnosis and provide support based on individual needs does not work well for those with more complex needs or whose experiences do not fit mainstream ways of understanding or experiencing disability. The NDIS is one mechanism through which Australia fulfils its obligations under the United Nations Convention on the Rights of Persons with Disabilities.33 Under the UN Convention, rights should be equitable, so should not be better enjoyed by people with some types of disability or needs over others. Equity decisions should not be outsourced to a market where decisions of profit compete with decisions about equitable service access. In order to ensure equitable disability support, we need to consciously build a disability support system (including the NDIS) that i) ensures that decisions with equity consequences do not rely on the goodwill of service providers but are a product of market design, and ii) that provides a cohesive system structure that enables access to necessary services for people with disability sitting outside the NDIS (including people aged over 65 years). The National Disability Insurance Agency has significant existing powers to make decisions affecting scheme equity through scheme redesign to address underutilisation and, at a micro‐level, through decisions relating to individual participants. Key to realising equity is an adaptive approach to the design of social care markets where all parts of the market are not treated in the same way.26 This approach means that the areas of disability support that work best within a traditional market environment may continue to function in that way but with government directing markets in a proactive way to provide supports for people with complex or unique needs. This could include increased pricing for services for particular groups or locations or appointing providers to deliver services where markets do not emerge to provide services. We urgently need evidence for how this can be done successfully.34 It is critical that issues of equity for people with disability, both within and outside the NDIS, are brought to the fore in the current NDIS review. A failure to address inequity within the operation and design of disability support means that the NDIS will continue to perpetuate the disabling and ableist structures that marginalise people with disability in the Australian society.

Jennifer Smith‐Merry · John Gilroy · Annmaree Watharow

Mja2 51899
Medical education Editorials 3 April 2023 Free

Distress and career regret in doctors: are we really that different to other professions?

Health departments should support the professional training they require and show that their employees are valued The COVID‐19 pandemic has again focused attention on the mental health and wellbeing of doctors, particularly those in training. An earlier meta‐analysis (54 studies during 1963–2015 that included a total of 17560 trainee doctors) found that 21–43% (pooled estimate: 28.8%) had symptoms of depression during residency.1 The cross‐sectional online survey of Australian orthopaedic trainees in late 2021 reported by Kollias and colleagues in this issue of the MJA2 found even higher rates of distress and burnout: 39 of 88 respondents (44%) met the Physician Well‐Being Index criterion for distress (a short 7‐item measure); 55 (63%) had experienced burnout during the preceding 30 days. Those who reported distress were more likely to regret having chosen medicine as their career.2 How concerning are these findings? Survey rates of various indicators of poor wellbeing (distress, depression, burnout) derived from nationally representative population‐based surveys are generally 30–50% lower than reported for doctors,3 leading to the conclusion that poorer wellbeing is more frequent among doctors than other adults. However, there are reasons why junior doctors should have better mental health than other workers,3 including the fact that they often enjoy socio‐economic advantage,4 are by definition well educated, have successfully negotiated early adulthood (when most chronic mental illness emerges), and have a vocation with purpose and minimal likelihood of unemployment. One explanation for the discrepancy is that single occupation surveys have important limitations. Most have relatively low response rates (38% in the study by Kollias and colleagues2), raising the problem of respondent bias producing a “grumpy worker effect”. A United Kingdom meta‐analysis found rates of distress in single occupation studies to be fairly consistent at one‐quarter to one‐third of respondents across a broad range of professions, significantly higher than rates for the general adult population.5 The authors concluded that being recruited to “stress surveys” may lead to selection bias or over‐reporting, and that this problem is shared by many occupations.5 When we examined rates for various professions derived from repeated national representative surveys in Australia with very high response rates (greater than 90%), the prevalence rates of mental ill‐health were in the range 4–22% in 2019, and 8–22% in 2020;6 the prevalence was lower for doctors, with higher rates of pay and life satisfaction, than for the other professions examined (lawyers, engineers, accountants, nurses and midwives, and teachers).6 Over the past few years, even before COVID‐19, professional bodies in Australia have reported similarly low morale, burnout, and job dissatisfaction among emergency service workers,7 architects,8 and teachers.9 So are doctors any different to other professionals? We do differ in two key ways: the length and depth of our apprenticeship, and who pays for our professional training. Medical schools in Australia have changed radically in recent decades: thirteen of twenty‐one medical programs are now graduate entry degrees, often providing accelerated four‐year, instead of five‐ or six‐year, programs. To compete internationally, most graduate programs provide MD qualifications, cramming into these shorter courses a research project that once required an extra year. Recording “learning experiences” and continuing workplace assessment fill students’ days, while professionalism, communication, and ethics courses compete for time with pre‐clinical and ward‐based learning, with (at my university, at least) extensive attendance requirements. As a result, medical students are older when they graduate and have acquired more debt than earlier generations;10 more have competing family and parental responsibilities than younger undergraduate medical students, and less of the downtime many older clinicians had when they were studying. The number of medical graduates in Australia increased from 2733 in 2010 to 3637 in 2019 (33% over nine years).11 Career progression in many specialities is slowed by bottlenecks, while other areas, including general practice and psychiatry, struggle to fill training roles. Nevertheless, in 2019 more final year students wanted to pursue surgery as a career than any other speciality except “adult medicine”, and only one final year student wanted to work in addiction medicine!11 After graduation, junior doctors face a mixture of excessive and conflicting demands. The social connections and support that help deal with long and stressful work hours are undermined by training rotations to far‐flung hospitals and frequent early year job changes. We do not know the ages of the surgical trainees in the survey by Kollias and colleagues,2 but most were probably in their thirties. Career regret and jealous glances at schoolfriends in professional careers, often fully qualified and many earning six‐figure salaries in their late 20s, and paying their personal trainers more per hour than a junior doctor receives, are understandable. Given the similar rates in other professions, distress and career regret are likely to affect a minority of trainees. However, the authors of a new meta‐analysis of longitudinal studies12 suggested that increasing resources and reducing work demands for junior doctors would improve their work engagement and clinical care. The same may be true for students, who may also need guidance about career pathways and community needs. After demanding weeks in hospitals, a junior doctor's weekends are regularly spent preparing for expensive exams (and paying HECS debts), unlike most other young professionals who have had protected study leave and for whom exams are paid. Surely it is time that health departments act like good employers, and fund and support the professional training they require and show that their employees are valued?

Nicholas Glozier

Mja2 51875
Ageing Letters 3 April 2023 Free

Recognising and supporting the role of enrolled nurses in Australian nursing homes

To the Editor: Nursing homes need enough qualified, skilled staff to care for residents with diverse clinical needs and preferences. Even though most staff are personal care workers, registered nurses and enrolled nurses represent the majority of registered health care professionals. The Royal Commission into Aged Care Quality and Safety heard that, by 2050, best practice nursing home care will require about 7170 more enrolled nurses.1,2 Despite this, the importance of enrolled nurses in the sector is overlooked. Newly legislated minimum time standards and requirements for registered nurses’ presence 24/7 do not explicitly include enrolled nurses.3 This means employers are incentivised to use other staff, particularly personal care workers. There are already reports of providers making enrolled nurses redundant despite staff shortages, risking further workforce deprofessionalisation and possible worse outcomes for both residents and staff.4 Although evidence specific to enrolled nurses is limited and must increase,5 they are valuable, regulated staff members in nursing homes and their role represents an important step in career progression between personal care workers and registered nurses. If Australia is to develop a world‐class aged care sector that prioritises the best possible resident outcomes and experiences and matches staffing levels and skills to the needs of residents, then enrolled nurses must be valued multidisciplinary team members. Necessary legislative change should mandate a minimum time standard for direct care staff that includes clear specification of the enrolled nurses’ role and contribution.

Micah DJ Peters

Mja2 51878

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