Volume 220 Issue 3

This issue of the MJA highlights areas where health and research can be affected — both positively and negatively — by national policies and approaches. Sexual and reproductive health are at a critical time globally with these rights under attack in so many places. Catriona Melville and Bonney Corbin highlight the areas where Australia has been “quietly making changes for the better” (doi: 10.5694/mja2.52194). These reforms are to be celebrated and are substantial. As they note, “we have seen more changes in the past six years than in the previous 60”. However, they pose critical questions on how these reforms can be protected and how can they be equitable. They conclude that although we are in the privileged position in Australia of no longer needing to noisily advocate for basic reproductive rights, “every one of us must reflect on our roles, responsibilities and power to reshape Australian health systems so that all people can choose if, how and when to parent”. Their message is reinforced in the editorial by Asvini Subasinghe and Seema Deb (doi: 10.5694/mja2.52210), who comment on two research articles on abortion in Victoria by Kristina Edvardsson and colleagues (doi: 10.5694/mja2.52202) and Melvin Marzan and colleagues (doi: 10.5694/mja2.52203). As their starting point, Subasinghe and Deb note the structural barriers to abortion care in Australia found by the 2023 Senate inquiry, and the lack of knowledge on equity of access. They note that “Support from peak bodies and the government for providing equitable access to early medical abortion has increased” but “much remains to be done to achieve equitable access for all Australian women”, and they make a case for a national abortion registry to support research into this area. The need for better research and coordination — this time for emerging therapies for children and adolescents — is the topic of a perspective by Michelle Lorentzos and colleagues (doi: 10.5694/mja2.52191). They highlight the need for collaboration and investment to ensure that children and adolescents access clinical trials and the many new therapies that are becoming available for diseases which have previously had few therapeutic options. The challenge with many of these diseases is their rarity, compounded in Australia by distance. The authors call for “the development of a national collaborative community of paediatric trials centres”, noting that “Given the rarity of many paediatric diseases and the complexity of emerging therapies, a national approach for complex trials in paediatrics is imperative”. They conclude that “without a change in approach to paediatric clinical trial delivery in Australia, paediatric clinical trials centres are at risk of failing to deliver equitable efficient access to novel treatment options”. Finally, a lesson from practice provides a timely reminder of an important infectious disease and the need for careful differential diagnosis and public health follow‐up. Caitlin Swift and colleagues describe a case of cutaneous diphtheria on the scalp of a man in conjunction with basal cell carcinoma (doi: 10.5694/mja2.52190). The case reinforces the importance of clinical vigilance and, for such an important disease, “prepared public health systems to enable a prompt response”. They conclude that “Maintaining high diphtheria vaccination coverage across all ages is crucial for protection against severe disease”.

Virginia Barbour

The Australian health system has the potential to evolve and advance sexual and reproductive health care so that all people can choose if, how and when to parent

Catriona Melville · Bonney Corbin

Anti-inflammatory drugs can reduce cardiovascular events, but risks, benefits and mediating mechanisms are still uncertain

Samia Kazi · James J H Chong · Clara K Chow

Investment and a coordinated national approach are needed to prevent Australian children falling behind their international peers

Michelle S Lorentzos · David Metz · Andrew S Moore · Laura K Fawcett · Paula Bray · Lani Attwood · Craig F Munns · Andrew Davidson

A 58-year-old man attended a Sydney outpatient dermatology clinic in November 2022 for a lesion on the vertex of the scalp, enlarging over 3 years

Caitlin Swift · Anthea L Katelaris · Thea Briggen Tiqui · Julie Smith · Tracey Papa · Estella Janz‐Robinson · Trang Nguyen · Qinning Wang · Jenny Draper · Vitali Sintchenko · Debbie JE Marriott · Vicky Sheppeard

Voluntary assisted dying is now lawful in all Australian states, with territories likely to follow.1 As this new end‐of‐life choice becomes more widely available and known, we should anticipate it arising during end‐of‐life care discussions with patients. In Australia, unlike some international models,2,3 voluntary assisted dying is not available to people without decision‐making capacity. Therefore, patients cannot request voluntary assisted dying through an advance care directive or other advance care planning document. However, some competent adult patients undertaking advance care planning may want to discuss voluntary assisted dying. Reflection is needed to prepare patients, clinicians and health services for discussions about voluntary assisted dying during advance care planning. Advance care planning is conceptually different from voluntary assisted dying As voluntary assisted dying was being debated and legalised across Australia, efforts were made to distinguish it from advance care planning.4 This conceptual work is important because the implementation of voluntary assisted dying is often accompanied by confusion and anxiety,5,6 and the two concepts are often misunderstood and conflated.7 We support educative efforts that define and distinguish voluntary assisted dying and advance care planning because this clarity enables patients to make informed choices. Advance care planning is a “process of planning for future health and personal care whereby the person's values, beliefs and preferences are made known to guide decision‐making at a future time when that person cannot make or communicate their decisions.”8 By contrast, in Australia, voluntary assisted dying provides assistance to die for adults with decision‐making capacity who meet strict eligibility criteria, for example, if the patient is expected to die within 6 or 12 months from an advanced, progressive medical condition.1 A critical difference is that voluntary assisted dying in Australia is available only to adults with decision‐making capacity, while advance care planning focuses on decision making about future care at a time when capacity is lost. Because access to voluntary assisted dying requires a person to retain decision‐making capacity throughout the process, advance requests for voluntary assisted dying cannot be given in an advance care directive (or any other advance care planning document). Nor can a person's substitute decision maker seek voluntary assisted dying on the person's behalf. This distinction is clearly reflected in law (indeed, some medical decision‐making legislation expressly excludes voluntary assisted dying) and guidance across Australia.9,10,11,12,13 Advance care planning practices and systems need to recognise voluntary assisted dying Although voluntary assisted dying is not the focus of advance care planning, clinicians and health services undertaking advance care planning need to be prepared for this topic. A pragmatic reason is voluntary assisted dying will inevitably be raised by some patients in their end‐of‐life planning. Attempts to exclude voluntary assisted dying are impractical as patients see end‐of‐life choices holistically and are unlikely to partition advance care planning and voluntary assisted dying. An ethical reason to prepare for voluntary assisted dying discussions during advance care planning is it may sometimes be appropriate to inform patients about their potential or future eligibility for voluntary assisted dying.14,15 Some patients, as with end‐of‐life discussions generally,7 may be waiting for health practitioners to initiate voluntary assisted dying discussions. Other patients may not be aware of voluntary assisted dying or their potential eligibility. Where it is legally possible to raise voluntary assisted dying (Box 1) and clinically appropriate, informing patients of all possible end‐of‐life choices would facilitate decisions that align with the values, beliefs and preferences at the heart of advance care planning. We emphasise this must be done sensitively, within the law, and guided by good clinical practice about end‐of‐life care discussions.18 Three critical issues for advance care planning systems and practices to consider Restrictions on raising voluntary assisted dying If a patient raises voluntary assisted dying during an advance care planning discussion, health practitioners are free to discuss it. However, if not initiated by a patient, Australian law (Box 1) is unusual internationally because it regulates whether, and how, a health practitioner can raise voluntary assisted dying with a patient. In Victoria and South Australia, law prohibits registered health practitioners from raising voluntary assisted dying with a patient or initiating a discussion about it. No other lawful health care option is prohibited from being raised in this way.19 Victorian doctors and family caregivers have reported confusion and access barriers as a result of this restriction.20,21 Advance care planning programs in these states should ensure health practitioners are aware of this legal duty but make it clear that voluntary assisted dying can be discussed once raised by a patient. This includes understanding when voluntary assisted dying has been raised, given reports that patients struggle to know the “right words”21 to successfully raise this topic, and the need for open questions to facilitate a lawful discussion. In all other states, doctors can raise voluntary assisted dying, as can some or all other health practitioners, depending on the state, but this is subject to providing certain information at the same time (Box 1).1 Again, advance care planning programs in these jurisdictions need to ensure their practitioners understand these laws. Individual conscience and institutional objection Advance care planning programs must address conscientious objection, which is legally protected. Some opposed health practitioners may be willing to engage in advance care planning discussions that include voluntary assisted dying, but others may not.22 However, objecting practitioners must still be aware of potential legal duties. For example, voluntary assisted dying laws in some states require that patients making a first formal request for voluntary assisted dying be provided specific information about it, including about practitioners or voluntary assisted dying services (Box 2). Professional and ethical duties imposed by bodies such as the Medical Board of Australia and the Australian Medical Association also include not hindering access to voluntary assisted dying.23,24 Institutions objecting to voluntary assisted dying can also affect advance care planning. While institutions may object to a range of practices,25,26 relevant here is an objecting institution whose advance care planning program does not permit discussion of voluntary assisted dying. Complex laws about institutional objection to voluntary assisted dying exist in New South Wales, Queensland and South Australia1 and can affect implementation of local advance care planning programs. Accessing voluntary assisted dying requires planning and time If advance care planning discussions do include voluntary assisted dying, they should ensure patients know that accessing voluntary assisted dying takes time, and requires planning20,21 (although it can be expedited in urgent cases).1 The most recent Victorian Voluntary Assisted Dying Review Board report advises voluntary assisted dying is not an emergency procedure, with a median time from first request to dispensing medication of 34 days (interquartile range, 23–53 days).27 This need to plan arises from: the time needed for the rigorous assessment and approval process; eligibility criteria that mean a person is expected to die within 6 or 12 months, and so is on a trajectory to death and reduced physical (and potentially mental) capacity; and the possibility of voluntary assisted dying requests being made late in a person's illness.21 Preparing advance care planning programs and practices for voluntary assisted dying Voluntary assisted dying will increasingly arise in advance care planning discussions now that it is legal in all Australian states. The palliative care sector has been proactive in addressing voluntary assisted dying in end‐of‐life discussions, with Palliative Care Australia, Australia's peak palliative care body, developing a position statement and guiding principles to support people providing care for individuals with a life‐limiting condition who may wish to access voluntary assisted dying. These principles state that individuals and their families and carers “must be treated with dignity and respect and supported to explore options available to them, which may include [voluntary assisted dying]”.28 Advance care planning programs, policies and practices must also explicitly recognise the impact of voluntary assisted dying, including addressing the three issues outlined above. Much of the work to date has focused on differentiating advance care planning and voluntary assisted dying. This is important, but efforts must now extend to support optimal advance care planning in the context of new voluntary assisted dying laws. This requires health systems and advance care planning programs to adapt advance care planning policies, guidelines and information to engage with how voluntary assisted dying will be discussed in advance care planning conversations (see Box 3 for a framework for such conversations). Health practitioners undertaking advance care planning should receive training on the impact of voluntary assisted dying on these discussions. Conversation guides can also help navigate lawful and patient‐centred advance care planning discussions that include voluntary assisted dying where appropriate. Processes for health practitioners to access support or escalate for advice are also needed. These responses should harness existing voluntary assisted dying resources and services where possible, such as health department voluntary assisted dying guidance and voluntary assisted dying care navigators in each state (Box 4). Advance care planning is centred on respecting a person's values, beliefs and preferences, which may now include a choice for voluntary assisted dying. Existing approaches to advance care planning must adapt to reflect this, requiring thoughtful engagement at the system, program, and practitioner level. Box 1 – Permissibility of registered health practitioners initiating discussions about voluntary assisted dying in Australia* New South Wales Queensland South Australia Tasmania Victoria Western Australia Doctors Yes, provided they inform at same time of available treatment and palliative care options and their likely outcomes Yes, provided they inform at same time of available treatment and palliative care options and their likely outcomes No Yes, provided they inform at same time of available treatment and palliative care options and their likely outcomes No Yes, provided they inform at same time of available treatment and palliative care options and their likely outcomes Nurse practitioners Yes, provided they inform at same time that palliative care and treatment options are available, and that the patient should discuss these with their doctor As above No Yes, provided they inform during discussion that a doctor would be the most appropriate person with whom to discuss the VAD process and care and treatment options No As above Other registered health practitioners As for nurse practitioners No No As for nurse practitioners No No * Note: Some voluntary assisted dying legislation also regulates the conduct of discussions by health care workers. Table adapted from Waller et al,1 Voluntary assisted dying in aged care: roles and obligations of medical practitioners,16 and Voluntary assisted dying in aged care: roles and obligations of registered nurses.17 Box 2 – Doctors’ conscientious objection obligations to patients who make a first request* for voluntary assisted dying New South Wales Queensland South Australia Tasmania Victoria Western Australia Provision of information – Contact details of a medical practitioner or service who can assist or the details of the care navigator service – Information sheet about voluntary assisted dying, and contact details of the Voluntary Assisted Dying Commission – Information sheet about voluntary assisted dying Timeframe to notify the patient of refusal of first request Immediately Immediately Within 7 days Within 7 days (plus 48 hours to decide) Within 7 days Immediately * A first request is a formal part of the voluntary assisted dying request and assessment process where a patient makes a clear request to a doctor for voluntary assisted dying. Table adapted from Waller et al1 and Voluntary assisted dying in aged care: roles and obligations of medical practitioners.16 Box 3 – Framework for discussion of voluntary assisted dying (VAD) in advance care planning (ACP) Box 4 – Selection of voluntary assisted dying health practitioner guidance relevant for advance care planning State Resource Care navigator (or equivalent) service details New South Wales NSW Voluntary Assisted Dying Clinical Practice Handbook: https://www.health.nsw.gov.au/voluntary‐assisted‐dying/Pages/practitioner‐handbook.aspx NSW Voluntary Assisted Dying Care Navigator Service: https://www.health.nsw.gov.au/voluntary‐assisted‐dying/Pages/navigator.aspx Queensland Advance care planning and voluntary assisted dying: https://www.health.qld.gov.au/clinical‐practice/guidelines‐procedures/voluntary‐assisted‐dying/information‐for‐healthcare‐workers/advance‐care‐planning‐and‐vad Queensland Voluntary Assisted Dying Support Service (QVAD‐Support): https://www.health.qld.gov.au/clinical‐practice/guidelines‐procedures/voluntary‐assisted‐dying/support/qvad‐support Queensland Voluntary Assisted Dying Handbook: https://www.health.qld.gov.au/clinical‐practice/guidelines‐procedures/voluntary‐assisted‐dying/information‐for‐healthcare‐workers/handbook Conversation guides for GPs: Voluntary assisted dying: https://www.health.qld.gov.au/__data/assets/pdf_file/0034/1195675/Conversation‐guide‐on‐voluntary‐assisted‐dying‐for‐GPs.pdf South Australia Voluntary Assisted Dying Clinical Guideline for Health Practitioners: https://www.sahealth.sa.gov.au/wps/wcm/connect/e148edcb‐134b‐449d‐8e57‐9c3f7ad21eb2/FINAL+Voluntary+Assisted+Dying+Clinical+Guideline+for+Health+Practitioners+v2.pdf?MOD=AJPERES&CACHEID=ROOTWORKSPACE‐e148edcb‐134b‐449d‐8e57‐9c3f7ad21eb2‐oK80Khi South Australian Voluntary Assisted Dying Care Navigator Service (SAVAD‐CNS): https://www.sahealth.sa.gov.au/wps/wcm/connect/public+content/sa+health+internet/services/primary+and+specialised+services/voluntary+assisted+dying/support+services/south+australian+voluntary+assisted+dying+care+navigator+service+savad‐cns Tasmania Voluntary Assisted Dying Navigation Service: https://www.health.tas.gov.au/health‐topics/voluntary‐assisted‐dying/voluntary‐assisted‐dying‐services/navigation‐service‐voluntary‐assisted‐dying Victoria Voluntary assisted dying – Guidance for health practitioners: https://www.health.vic.gov.au/publications/voluntary‐assisted‐dying‐guidance‐for‐health‐practitioners The Statewide Voluntary Assisted Dying Care Navigator Service: https://www.health.vic.gov.au/patient‐care/voluntary‐assisted‐dying Western Australia Western Australian Voluntary Assisted Dying Guidelines: https://www.health.wa.gov.au/Articles/U_Z/Voluntary‐assisted‐dying/Resources‐for‐health‐professionals Western Australian Voluntary Assisted Dying Statewide Care Navigator Service: https://www.health.wa.gov.au/Articles/U_Z/Voluntary‐assisted‐dying/Statewide‐Care‐Navigator‐Service See also “How to do advance care planning: a quick guide for health professionals” for general information about advance care planning: https://end‐of‐life.qut.edu.au/advance‐care‐directives.

Ben P White · Madeleine Archer · Casey M Haining · Lindy Willmott

Despite significant strides in improving access to this essential service, more is needed

Asvini K Subasinghe · Seema Deb

We need a strong, comprehensive, adequately funded approach that prioritises equity and reaches the entire community

Becky Freeman · Mike Daube

More comprehensive demographic data regarding unintended pregnancies and reproductive health service access would better guide policy and practice

Kristina Edvardsson · Kirsten I Black · Deborah Bateson · Wendy V Norman · Mridula Shankar · Leesa Hooker · Xia Li · Angela J Taft

The availability of outpatient abortion was important for maintaining access during the COVID-19 pandemic

Melvin B Marzan · Eleanor Johnson · Patricia Moore · Heng Jiang · Lisa Hui

Our evidence-based profile of people who smoke can inform population and targeted interventions for reducing tobacco use

Jessica Yi Han Aw · Christina Heris · Raglan Maddox · Grace Joshy · Emily Banks AM

Elena Cavazzoni · Maeghan Toews · Helen I Opdam

Johannes Mulder · Hans Sonneveld

In reply: We thank Cavazzoni and colleagues for their contribution on the legal aspects of voluntary assisted dying (VAD) and organ donation after circulatory death (DCD)1 in response to our article.2 Although it was true traditionally that no property existed in the dead body, the law has evolved, particularly in Australia concerning tissue donation, whereby property rights are now vested in relatives, for example with ownership of sperm from a dead body.3 Thus, contrary to the claim of Cavazzoni and colleagues,1 Australian law does indeed deal with the subject of ownership of procured tissues, which would extend to organs and would come into effect on the death of the person undergoing autonomous VAD. To support their argument that property rights over a dead body do not exist, Cavazzoni et al cite generally Quigley,4 with no specific detail. However, Quigley concluded that tissue or sperm obtained from dead bodies belongs to relatives.4 Moreover, in an article underpinning her book, Quigley concluded that “Recent legal decisions have seen a move towards the tentative explicit recognition of some property rights to biomaterials vesting in the source of the materials”.5 Thus, the traditional doctrine of “no property in the dead body” is outmoded and undergoing change. We believe it would be imprudent to ignore the rights of relatives from a legal point of view. From an ethical point of view, the rights of relatives — who, after all, have the duty to bury or cremate their loved one — must be considered. The relatives should be involved, as is the practice in the Netherlands with combined VAD and DCD, and in Australia with DCD. The last thing the whole process of organ donation needs is a legal challenge over organ procurement against the wishes of relatives. Difficult as it may be, those formulating guidelines should incorporate the consent of relatives into a guideline for combined VAD and DCD.

Jan Bollen · Neera Bhatia · James Tibballs