Palliative care

Successful ageing in place is the collective responsibility of the broader health and social care system

Maria C Inacio · Stephanie Harrison · Johannes Schwabe · Maria Crotty · Gillian E Caughey

Discussion of the ethical and legal difficulties in implementing voluntary assisted dying (VAD) in New South Wales correctional settings, and our approaches towards community-equivalence in VAD for terminally ill prisoners

Diya Ahluwalia · Leigh Haysom

A discussion of the complexities that arise when people who use alcohol and other drugs require palliative care

Grace FitzGerald · Jon Cook · Peter Higgs · Charles Henderson · Sione Crawford · Thileepan Naren

It is essential that the practice of restraining dying prisoner patients is reviewed and overhauled so that prisoners can be granted the fundamental human right of a dignified death

Lara Pemberton · Stacey Panozzo · Jennifer Philip

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

Organ donation after VAD in Australia appears to be both legally and clinically feasible

Jan Bollen · Courtney Hempton · Neera Bhatia · James Tibballs

To the Editor: The impact of the coronavirus disease 2019 (COVID‐19) pandemic continues to affect institutional care, both acute and aged care services. More hidden is the impact on community care, especially community palliative care. Community palliative care aims to enable people to die where they wish. About 70% of the population seek to die at home, but between 4% and 12% actually do.1 During the COVID‐19 pandemic, however, data from three Melbourne community palliative care services indicated a rise in deaths at home of between 30% and 50% (personal communication, John Doran, Manager, Melbourne City Mission Palliative Care; Janet Phillips, Chief Executive Officer, Peninsula Home Hospice; and Kelly Rogerson, Chief Executive Officer, Palliative Care South East; December 2022). This increase has not been recently reported in Australia. One factor may be family reticence to admit their family member for inpatient care because of continued visitor restrictions2 — also reflected in international literature.3,4 Consequentially, the client profile has changed as more people present with complex needs and a higher number need terminal care. This requires lengthier visits from clinical staff — one service employed a registrar to support general practitioners (personal communication, Janet Phillips, December 2022). More emphasis is placed on telehealth, now routine, often substituting every second scheduled visit; and many staff work from home (personal communication, John Doran, Janet Phillips, and Kelly Rogerson, December 2022). The use of in‐home overnight respite has markedly increased, providing additional support to family carers (personal communication, Janet Phillips, December 2022). Perhaps because of increased workload, locum doctors are less available, meaning that palliative care staff are increasingly called on to support terminal care, including complex symptom management, and to verify death (personal communication, John Doran, Janet Phillips, and Kelly Rogerson, December 2022). Staff are still required to do regular risk assessment, including COVID‐19 testing, and to wear personal protective equipment, aligned with Department of Health guidelines for health care workers.5 A significant number of inpatient bed‐days are saved when people are supported to die at home, which may reduce the burden of care in institutional settings.6 Further work is required to measure the impact of home‐based care on outcomes for terminally ill people and their families and to understand the value of that care to the health care system.

Margaret O'Connor

From fearing death as a paediatric patient to confronting it as a training doctor

Dominique S Schell

Does pregnancy change a person’s medical values and preferences?

John J Bockxmeer · Casey M Haining · Andrea Atkinson

The Care of Older People and Palliative Care Panel developed two clinical flow charts with practice points providing guidance on the delivery of quality geriatric and palliative care during the COVID-19 pandemic

for the National COVID‐19 Clinical Evidence Taskforce

The card from the vet was the nicest saddest thing anyone had done for us — a fiction piece based on my experience of working as a junior doctor after the death of my father

Isobel Yeap

An approach for reframing palliative care has been designed to help improve the wellbeing of people with serious illness

Peter Hudson · Anna Collins · Mark Boughey · Jennifer Philip

Objectives: To investigate the perspectives of doctors involved with voluntary assisted dying in Victoria regarding the Voluntary Assisted Dying Act 2017 (Vic) and its operation. Design, setting, participants: Qualitative study; semi‐structured interviews with 32 doctors who had participated in the voluntary assisted dying system during its first year of operation (commenced 19 June 2019). Doctors were interviewed during April‒July 2020. Results: Three major themes related to problems during the first year of operation of the Act were identified: the statutory prohibition of health professionals initiating discussions with their patients about voluntary assisted dying; the Department of Health and Human Services guidance requirement that all doctor‒patient, doctor‒pharmacist, and pharmacist‒patient interactions be face‐to‐face; and aspects of implementation, including problems with the voluntary assisted dying online portal, obtaining documentary evidence to establish eligibility, and inadequate resourcing of the Statewide Pharmacy Service. Conclusions: Doctors reported only limited concerns about the Victorian voluntary assisted dying legislation, but have had some problems with its operation, including implications for the accessibility of voluntary assisted dying to eligible patients. While legislative change may resolve some of these concerns, most can be ameliorated by improving the processes and systems.

Lindy Willmott · Ben P White · Marcus Sellars · Patsy M Yates

Implementing voluntary assisted dying legislation demands respectful communication and collaboration between health professionals and community The Voluntary Assisted Dying Act 2017 (Vic) (VAD Act) was passed by the Victorian Parliament in November 2017 and came into effect on 19 June 2019.1 The VAD Act is the only legislation of its kind implemented in Australia, but there are several other international jurisdictions where comparable legislations apply.2,3,4 Victoria is the first state in Australia to implement voluntary assisted dying (VAD). There is a dearth of local evidence available which explores the implementation of assisted dying services into a hospital setting, although potential ethical challenges have been identified.2,5,6 This article aims to outline the experience of a tertiary public health service in Melbourne’s western suburbs which implemented VAD in 2019 and the resultant policies and procedures. With the enactment of the VAD Act, Victorian public health services were expected to develop policies and procedures which apply when a patient requests VAD or related information.7 As a tertiary public health service in Victoria, the health service used policies and guidelines suggested by the Department of Health and Human Services (DHHS) and shared documents from other metropolitan tertiary hospitals as a basis for developing local policies and procedures.7,8 The Victorian legislation provided the eligibility criteria and necessary steps required to access VAD, including timing of requests, medical assessments, medication prescription, reporting and professional requirements.1 In mid‐2018, the health service established a VAD Working Group with senior professional and executive representation, including the Chief Medical Officer; the General Counsel; the Executive Director, Nursing and Midwifery; relevant medical heads of units, senior nurses, allied health representatives, and the Senior Clinical Communications Advisor. The Clinical Communications Advisor conducted 1:1 consultations with the 25 Working Group members to explore the impact of VAD legislation on their professional group and clinical practice between September and December 2018. The outcomes of these consultations highlighted the systemic and ethical complexities inherent in implementing VAD and informed the next steps, including the need to engage with a range of appropriately skilled and experienced clinicians throughout the implementation phase.4 A key consideration during the implementation phase was balancing staff members’ right to conscientiously object to supporting patients when the assistance was related to VAD, with the expectation that health professionals would continue to provide care unrelated to VAD.5 Capacity for moral injury for staff for whom their beliefs and values were at odds with the employing organisation’s approach to VAD needed to be recognised and addressed throughout the implementation process.5,9 To assist with planning, the health service had to decide which VAD model of care pathway would be provided — either A, B or C10 (Supporting Information, appendix 1). The pathway selected by the health service was dependent on the number of suitably qualified medical professionals willing to perform VAD coordination and/or consultation roles, in line with VAD legislation requirements. In 2019, the hospital’s medical professionals were invited to complete an anonymous survey asking them to indicate their willingness to participate in VAD. This survey achieved 208 responses (a 17% response rate), 106 of those were from senior medical staff, with 72% of respondents supporting a patient’s access to VAD at the health service. In addition, eight senior medical staff members expressed a willingness to be involved in the facilitation of VAD. The survey results guided the health service’s management to determine Pathway A as the appropriate model of care for this health service. In parallel with this survey, training for VAD was provided by the DHHS‐led VAD Implementation Taskforce. During these sessions, the need for local VAD procedures were identified, as staff members required further guidance to navigate patients’ requests for VAD and to ensure the health service adhered to legislative requirements. Importantly, the procedures needed to support the right of staff to conscientiously object to VAD while fulfilling lawful access to care.5 The multidisciplinary Working Group met 12 times over an 8‐month period, with the first meeting occurring in November 2018. As implementation drew closer, the Working Group focused on a number of actions to operationalise the legislation, including the development of two VAD procedural flow charts for requesting and assessing VAD (Box 1) and for VAD medication and administration (Box 2). These procedural flow charts, as well as the organisation‐wide VAD policy and procedures and the DHHS guidelines, were distributed to all staff electronically and made available on the organisation’s intranet. The procedures developed applied to all staff, including agency and contract staff. Two open‐forums (“grand rounds”) were held to educate staff on VAD legislation, inform staff of the Pathway A model of care, and launch the hospital’s VAD policy and procedures (Supporting Information, appendices 2 and 3). All clinical staff were invited to attend. These forums attracted more than 500 participants and were part didactic and part panel‐led, with interactive audience discussion. Over 50 questions were received through the anonymous electronic tool Mentimeter (www.mentimeter.com) and verbal contributions were documented. A broad range of perspectives, concerns and clinical scenarios posed throughout these sessions prompted the development of a comprehensive frequently asked questions document, which provided further guidance regarding the integration of VAD into clinical practice. Despite the VAD Act coming into effect from June 2019, the health service wanted to provide adequate VAD advice and training before it became an option for patients. The health service thus determined that the VAD policy, procedures and flow charts would be enacted in July 2019. Challenges implementing voluntary assisted dying There were a number of challenges during the planning phase. Primarily, the health service needing to balance the guiding principles of the legislation, which focused on patient‐centred decisions, while embedding practices to mitigate organisational risk. One example surfaced when the Working Group were deciding where VAD medication would be stored during an inpatient stay. The patient’s autonomy was core, but other safety issues were factored in. In this instance, the decision was made to store the patient’s VAD medication box securely within the central pharmacy rather than on the ward or at the patient’s bedside. Perhaps the largest challenge was fulfilling the responsibility of a Pathway A public health service to provide VAD as an option while respecting the staff member’s decision to conscientiously object to facilitating or being involved in VAD. The need to consider each case individually was highlighted, as it was recognised that there is a spectrum of views in relation to conscientiously objecting. Broad consultation enabled a sensitive and considerate implementation plan, including the addition of known conscientious objectors in the Working Group. Processes were embedded to allow conscientious objectors to distance themselves when patients request VAD, including the provision of informed agency nursing staff to replace potential conscientious objectors on a shift, and the broad promotion of a single contact phone number, to which conscientious objectors could anonymously call and hand over this responsibility. Without comparable local evidence, the expected demand for VAD was inferred from international evidence, which predicted that a low number of people would request VAD.2,3 Over a 14‐month period (June 2019 to September 2020), the health service received 42 patient requests for VAD, with four patients progressing to a prescription of VAD medications and dying as a result. Three of these four patients died after receiving VAD as inpatients and one died at home after being discharged from the health service. Patients who requested VAD were cared for across a number of services and received concurrent palliative care as part of appropriate end‐of‐life care management. The patients who died after receiving VAD were cared for in the ward that was most familiar and suited to their needs; palliative care was provided by the treating team, with specialist input as required. Most VAD requests were from patients in the final weeks of their lives, who therefore did not survive the full length of the VAD assessment process. This observation made it imperative that VAD processes complemented end‐of‐life care, thus not denying the patient and their loved ones appropriate palliative and bereavement care respectively. Indeed, a core tenet of staff education was that progression of VAD may occur during end‐of‐life care; therefore, palliative and comfort care must continue concurrently with VAD processes. Implementing VAD in a hospital setting demanded sensitive, honest and respectful communication between multiple health professional groups and the community, particularly between individuals with opposing views. A significant amount of time was spent engaging with and listening to staff with a myriad of perspectives. The framework provided by the VAD legislation and the DHHS VAD Implementation Taskforce enabled the health service to develop local policy, procedures and resources that most appropriately serve the community. The multidisciplinary Working Group proved a useful forum to deal with the complex issues inherent in implementing a progressive legislation into a large health service. Since the implementation of VAD, statewide monitoring and surveillance of VAD has occurred through multisite data collection and mandated reporting. Locally, discussion of case studies, engagement in multisite research and staff consultation will continue to provide vital guidance to the health service when delivering VAD, improving its processes and responding to the needs of patients and staff. Box 1 – Voluntary assisted dying request and assessment procedural flow chart Source: Western Health. Figure reproduced with permission. Box 2 – Voluntary assisted dying medication and administration procedural flow chart EMR = electronic medical record; iPM = patient administration system. Source: Western Health. Figure reproduced with permission.

Sarah Booth · Paul Eleftheriou · Claire Moody

To the Editor: Palliative radiotherapy is effective for symptomatic management of bone metastases in cancer patients. However, it may take 2–4 weeks after completion of radiotherapy to achieve maximal clinical response.1 Radiotherapy can be delivered as a single fraction treatment (SFRT), or over a more protracted course of multifraction treatment (MFRT).2 Randomised trials have consistently shown that SFRT and MFRT provide equally effective symptom control,3 and SFRT is associated with lower medical and societal cost,4 allowing for better health services utilisation. Hence, in patients with poor prognosis, the use of SFRT over MFRT should be encouraged to minimise the time patients spend on treatment at the end of life without compromising efficacy. Using the population‐based Victorian Cancer Registry data linked to the Victorian Radiotherapy Minimum Data Set, we evaluated the use of SFRT for bone metastases at the end of life. The study sample included all cancer patients who received radiotherapy for bone metastases between 2013 and 2016, and died within 30 days of commencing radiotherapy. The primary outcome was SFRT use and the associated factors. The Cochrane–Armitage test for trend was used to evaluate temporal changes in SFRT use over time. Logistic regression was used to evaluate factors associated with SFRT use; variables with a P value below 0.1 in univariate analyses were included in multivariate model, which employed the robust standard error, with analyses clustered on patient identifiers to allow for clustering of patients who had multiple courses of radiotherapy. The study was approved by the Austin Health Human Research Ethics Committee (LNR/18/Austin/34). A total of 1069 patients received 1359 courses of radiotherapy for bone metastases at the end of life, of which 396 courses (29%) were SFRT, and 963 (71%) were MFRT (Box). There was no significant change in SFRT use over time: from 30% in 2013 to 32% in 2016. SFRT was more commonly used closer to death: 49%, 29% and 25% of radiotherapy courses delivered within 7 days, 8–14 days, and 15–30 days of death, respectively. There were large institutional provider variations in SFRT use: 33% and 19% of radiotherapy delivered in public and private institutions, respectively. In multivariate analyses, the site of bone metastases, time between radiotherapy and death, and treatment institution type were independently associated with SFRT use. Overall, in this large Victorian population‐based study, less than one in three courses of radiotherapy for bone metastases at the end of life were SFRT, and about one in two courses of radiotherapy delivered in the last week of life were MFRT, meaning that these cancer patients spent multiple days in their final week of life receiving radiotherapy. Acknowledging that estimation of prognosis towards the end of life can be difficult, there are models (eg, the TEACHH model)5 that can be useful in guiding clinicians in this process. Nonetheless, given the large body of evidence supporting the use of SFRT for bone metastases, there is a need to raise awareness of the recommendation to use of SFRT instead of MFRT, especially at the end of life, among radiation oncologists, other health professionals and patients. This can be achieved through health education initiatives such as the Choosing Wisely campaign (https://www.choosingwisely.org.au/). Box – Factors associated with single fraction palliative radiotherapy (SFRT) for bone metastases at the end of life in Victoria, 2013–2016 (1359 courses of radiotherapy) Variable SFRT (n = 396, 29%) MFRT (n = 963, 71%) Multivariate analysis (odds ratio [95%CI]) P Age (years) Mean (SD) 71.7 (11.9) 70.1 (12.3) < 60 62 (24%) 192 (76%) 1 60–69 95 (27%) 252 (73%) 1.04 (0.67–1.61) 0.9 70–79 149 (32%) 312 (68%) 1.29 (0.83–1.99) 0.3 ≥ 80 90 (30%) 207 (70%) 1.17 (0.73–1.88) 0.5 Sex Men 247 (28%) 622 (72%) Women 149 (30%) 341 (70%) Primary cancer type Lung 163 (30%) 373 (70%) Prostate 49 (29%) 118 (71%) Breast 32 (29%) 77 (71%) Gastrointestinal 53 (28%) 138 (72%) Melanoma 21 (25%) 62 (75%) Other 78 (29%) 195 (71%) Target site of radiotherapy Spine 202 (27%) 545 (73%) 1 Skull 9 (6%) 147 (94%) 0.15 (0.06–0.38) <0.001 Rib 35 (51%) 33 (49%) 3.82 (2.10–6.95) <0.001 Shoulder 35 (49%) 36 (51%) 2.80 (1.44–5.42) 0.002 Hip 19 (36%) 34 (64%) 1.67 (0.78–3.54) 0.2 Pelvic bone 20 (27%) 54 (73%) 1.10 (0.57–2.14) 0.8 Extremities 42 (52%) 39 (48%) 3.04 (1.74–5.29) <0.001 Multiple site 34 (31%) 75 (69%) 1.25 (0.73–2.14) 0.4 Time between radiotherapy start date and death 1–7 days 92 (49%) 97 (51%) 1 8–14 days 99 (29%) 246 (71%) 0.40 (0.25–0.65) < 0.001 15–30 days 205 (25%) 620 (75%) 0.33 (0.21–0.51) < 0.001 Socio‐economic status 1st quintile (most disadvantaged) 103 (35%) 194 (65%) 1 2nd quintile 63 (32%) 137 (69%) 0.88 (0.55–1.40) 0.6 3rd quintile 70 (26%) 203 (74%) 0.73 (0.46–1.17) 0.2 4th quintile 55 (22%) 194 (78%) 0.63 (0.39–1.02) 0.06 5th quintile (least disadvantaged) 105 (31%) 235 (69%) 1.00 (0.62–1.61) 0.9 Remoteness of area of residency Major city 262 (28%) 668 (72%) Inner regional 109 (31%) 241 (69%) Outer regional/ remote 25 (32%) 54 (68%) Treatment institution type Public 317 (33%) 633 (67%) 1 Private 79 (19%) 330 (81%) 0.44 (0.29–0.65) < 0.001 Treatment institution location Metropolitan 280 (27%) 746 (73%) 1 Regional 116 (35%) 217 (65%) 1.02 (0.71‐1.47) 0.9 Year of radiotherapy 2013 115 (30%) 262 (70%) 2014 93 (28%) 243 (72%) 2015 84 (26%) 241 (74%) 2016 104 (32%) 217 (68%) MFRT = multifraction radiotherapy.

Wee Loon Ong · Farshad Foroudi · Roger L Milne · Jeremy L Millar

To the Editor: There has been recent important discourse about the adverse impact of coronavirus disease 2019 (COVID‐19) on mental health, with modelling from the Brain and Mind Centre predicting increases in suicide in the wake of the pandemic.1 Links with the economic downturn have been emphasised, with financial stressors and loss of productivity among the youth and working adults playing a large part, leading to a call for proactive investment in mental health services.1 This is of undisputed, urgent importance. However, there has been relative silence about the effects of the pandemic on suicide risk in older adults, especially men aged 85 years or over, who have the highest rate of suicide of all age groups in Australia.2 Older adults are particularly vulnerable to the social ramifications of the pandemic, including social distancing, if not frank social exclusion by quarantine, exacerbating pre‐existing loneliness,3 particularly for those in residential care. Management of older people with pre‐existing mental illness as well as the expected increases in depression and anxiety3,4 have been confounded by changes in service provision and access to mental health services.3 Similarly, delays in presentation and management of physical illness combined with the suspension of elective procedures4 may contribute to untreated pain and other distressing physical symptoms, also identified as risk factors for suicide.5 Furthermore, calls to reopen the economy knowing the risk this poses to older people — seen by some as “expendable” — reflects societal ageism and adds to older people's own internalised ageism.6 Perceptions of disconnection from society and feeling burdensome and devalued are already known associations with late‐life self‐harm and suicide.5 In addition to fuelling active self‐harm, there has been speculation regarding links between the pandemic and increased requests for voluntary assisted dying.7,8 These reports suggest that such requests have been driven by anxiety about dying, fears of loss of control, and inability to access help for distressing symptoms. This is not unfounded, given the complexity of providing appropriate palliative care to older patients who are dying, particularly to those in nursing homes, ever more so during the COVID‐19 pandemic.4 We add to the call to act urgently and flatten the mental illness and suicide curve1 for Australians of all ages.

Anne P F Wand · Carmelle Peisah

Voluntary assisted dying is not part of palliative care The Voluntary Assisted Dying Act 2017 (Vic)1 came into effect in Victoria on 19 June 2019. We present the case of an inpatient death under the voluntary assisted dying Act in our health service and describe a short case history followed by a discussion examining two relevant topics related to voluntary assisted dying and palliative care: conscientious objection and the complexity of palliative care involvement. Case report The patient was diagnosed with metastatic (axillary nodes) breast cancer in 2016 at the age of 53 years and declined completion staging and all conventional treatment options. She was referred to community palliative care services in 2019 with clinically progressive locoregional disease, manifesting as fungating malignant disease of the chest wall and axilla. She experienced symptoms of pain, nausea, anorexia, and weight loss. Pharmacological treatment options for her symptoms were refused due to her sensitivities to many medications. The patient lived alone but had support from friends and siblings. She had a history of chronic fatigue syndrome and mood disorder. She did not subscribe to a religion, but believed in the soul and an afterlife. She had been caring for her mother, who died from advanced breast cancer. Her mother's suffering at the end of her life was a significant reason for the patient's decision to pursue voluntary assisted dying. She commenced the voluntary assisted dying process in July 2019. Her initial intention was to self‐administer the voluntary assisted dying substances at her home on her birthday (early December). However, she was admitted to the palliative care unit (PCU) in late November for symptom management. During her admission, it became clear to the patient and her carer (who was also her voluntary assisted dying support person) that her deterioration would preclude her from returning home. She made a request to self‐administer the voluntary assisted dying substances in the PCU. The organisational voluntary assisted dying clinical practice guidelines stated that voluntary assisted dying could not occur in the PCU, in line with the Royal Australasian College of Physicians (RACP) statement on voluntary assisted dying, which recommended that “voluntary assisted dying must not be seen as part of palliative care”.2 The patient was informed of the organisational approach and the need to minimise misperceptions about the PCU. Both the patient and her support person understood and accepted our stance, and we commenced the search for another site within the service that could accommodate her wishes. Staff in the first venue of care option conscientiously objected to the admission. Despite her condition continuing to deteriorate and the imminence of her preferred date of administration, she remained understanding. Another venue of care within the service was found and she was transferred there 2 days before her birthday. She self‐administered the voluntary assisted dying substance on her birthday as originally intended. Conscientious objection Although not defined in the Act, conscientious objection has been outlined by the Victorian Department of Health and Human Services (DHHS) as an outcome of a conflict in beliefs or values.3 A similar conflict was recently discussed in relation to a growing concern about moral injury in health care, where moral injury was defined as “perpetrating, failing to prevent, bearing witness to, or learning about acts that transgress deeply held moral beliefs and expectations”.4 Health care professionals are subject to moral injury as a result of “being unable to provide high‐quality care and healing in the context of health care”.5 In this context, conscientious objection becomes integral to the psychological safety of the health care workforce as voluntary assisted dying is introduced into mainstream medicine. The DHHS in Victoria permitted each health service within its jurisdiction to decide on their extent of involvement in voluntary assisted dying.4 This was determined by “whether participation aligns with the values of the health service”.6 The Catholic Health and Aged Care Services, which are responsible for several health services across Victoria, were clear that they would not provide or facilitate voluntary assisted dying.7 Such health services are under no obligation to refer a patient who has requested voluntary assisted dying. However, there is a requirement to inform the patient as soon as practicable that they will not assist them and the services cannot actively inhibit the patient's access to treatment.3 All health services were obliged to nominate their level of participation, irrespective of the actual number of health care professionals in the organisation willing to be involved with voluntary assisted dying.3 These choices were: pathway A — single service (it has the necessary suite of services and staff with sufficient expertise to provide voluntary assisted dying within their existing health service); pathway B — partnership service (these services would require the assistance of other services to provide the full requirement of voluntary assisted dying); and pathway C — information and support service (it includes services electing not to provide voluntary assisted dying). The dilemma of this approach for health care services is the contentious nature of voluntary assisted dying. Organisations consist of people some of whose individual values and beliefs are unlikely to align neatly under the organisational approach when it comes to voluntary assisted dying. The Voluntary Assisted Dying Act (Part 1, Section 7) outlines scenarios where registered health care practitioners may conscientiously object to participation in the voluntary assisted dying process.1 It provides for health care staff to refuse to participate in, or be present for, the administration of the voluntary assisted dying substance. The DHHS has provided clear guidelines for individual health care practitioners with regards to conscientious objection.3 A health practitioner “has the right to refuse to assist or support the patient when the assistance is associated with voluntary assisted dying”. Health practitioners are expected to “provide routine and other care unrelated to a request for voluntary assisted dying”.3 Health practitioners also need to balance their own moral and ethical beliefs while respecting differences and ensuring the rights of the patient are upheld. Therefore, health services face the challenge of navigating between the principle of justice and equity in access to health care and the responsibilities to their employees. Health practitioners cannot conscientiously object to the routine care of a patient who has elected to undertake voluntary assisted dying. Palliative care The specialty of palliative care is in its infancy, having only received recognition in Australasia as a specialty in 1998. It aims to improve the quality of life of patients and caregivers, faced with life‐limiting illness, by addressing physical, psychosocial and spiritual challenges. There is mounting evidence that it is indeed effective in doing so.8 Nevertheless, population‐based studies demonstrate a public misperception associating palliative care with euthanasia.9 The International Association for Hospice and Palliative Care has stated that assisted dying in all its forms corrodes the work done by the specialty and risks patients refusing palliative care for fear that health practitioners may hasten their death.10 There is a continuing need to increase public awareness of palliative care and clarify misperceptions. Therefore, palliative care services need to maintain their differentiation from voluntary assisted dying. The RACP emphasises that voluntary assisted dying “must not be seen as part of palliative care” and that they need to be seen as “distinct practices”.2 Peak palliative care organisations, such as Palliative Care Australia and the Australia and New Zealand Society of Palliative Medicine, similarly emphasise that voluntary assisted dying is not part of palliative care practice.11,12 The International Association for Hospice and Palliative Care has recommended that assisted dying practices not take place in PCUs.10 The risk otherwise is further blurring of the public perception and an erosion of trust. The RACP has recommended that all patients seeking voluntary assisted dying should be made aware of palliative care and that a referral to palliative care is strongly recommended.2 The Victorian DHHS, in its voluntary assisted dying documentation, has also outlined a key role for palliative care. This includes “managing complex communication interactions with patients and families, and responding to complicated, multifaceted psychosocial and/or spiritual distress”.3 Furthermore, they describe the most “valuable [role] palliative care specialists play is supporting other healthcare teams and professionals through consultation, advice and support to provide end‐of‐life care for their patients”.3 The challenges for palliative care services are therefore clearly visible: how to maintain its distinction and separation from voluntary assisted dying and yet provide a necessary and expected service for patients at the end of life who have elected voluntary assisted dying. The RACP and the DHHS guidelines will necessitate palliative care involvement, not only for our patients and their families but also in support of medical practitioners. Palliative care services risk becoming the gatekeepers for voluntary assisted dying because of our expertise in managing complex communication and discussions around death and dying. In addition, there is the risk of further burdening already stretched palliative care services, with education, counselling and support of fellow health service staff, in matters relating to voluntary assisted dying. It is important to note that the voluntary assisted dying legislation does not provide extra resources to services to support their health care staff. Nevertheless, specialist palliative care services can help patients who elect voluntary assisted dying, as they are well placed to provide specialist support within clear boundaries of engagement. This can include optimal symptom management as well as psychosocial and spiritual support. The RACP, the Australia and New Zealand Society of Palliative Medicine and Palliative Care Australia have all emphasised the need for greater access and resourcing for specialist palliative care. Our concern echoes that of the Catholic Health and Aged Care Services that we cannot, at this time, be distracted by the diversion of limited palliative care resources to voluntary assisted dying and lose focus on the need to ensure adequate and timely access to palliative care across Victoria and Australia.7 The perception of specialist palliative care services in cases where voluntary assisted dying has been requested will remain problematic. Collaboration with families and treating teams is essential and should involve the recognition of specialist palliative care involvement separate from voluntary assisted dying. The challenge remains to educate the public and health care professionals about palliative care and how it differs from voluntary assisted dying, amidst a new background of mixed messages. Regardless of the end‐of‐life choice made, holistic care and good communication skills are not solely related to our specialty, these are skills that can be, and need to be, routine for all areas of medicine.

Eswaran Waran · Leeroy William

Objectives: To develop and validate a frailty index, derived from aged care eligibility assessment data. Design: Retrospective cohort study; analysis of the historical national cohort of the Registry of Senior Australians (ROSA). Participants: 903 996 non‐Indigenous Australians aged 65 years or more, living in the community and assessed for subsidised aged care eligibility during 2003–2013. Main outcome measures: 44‐item frailty index; summary statistics for frailty index score distribution; predictive validity with respect to mortality and entry into permanent residential aged care during the five years after assessment. Results: The mean frailty index score during 2003–2013 was 0.20 (SD, 0.07; range, 0–0.41); the proportion of assessed older people with scores exceeding 0.20 increased from 32.1% in 2003–2005 to 75.0% in 2012–2013. The risks of death and entry into permanent residential aged care at one, three and five years increased with frailty index score level (at one year, high [over 0.35] v low scores [under 0.05]: hazard ratio for death, 5.99; 95% CI, 5.69–6.31; for entry into permanent residential aged care, 8.70; 95% CI, 8.32–9.11). The predictive validity (area under the receiver operating characteristic curve) of Cox proportional hazard models including age, sex, and frailty index score was 0.64 (95% CI, 0.63–0.64) for death and 0.63 (95% CI, 0.62–0.63) for entry into permanent residential aged care within one year of assessment. Conclusions: We used Australian aged care eligibility assessment program data to construct and validate a frailty index. It can be employed in aged care research in Australia, but its application to aged care planning requires further investigation.

Jyoti Khadka · Renuka Visvanathan · Olga Theou · Max Moldovan · Azmeraw T Amare · Catherine Lang · Julie Ratcliffe · Steven L Wesselingh · Maria C Inacio

E thics in palliative care: a complete guide

Gin S Malhi

Objective: To develop a casemix classification to underpin a new funding model for residential aged care in Australia. Design, setting: Cross‐sectional study of resident characteristics in thirty non‐government residential aged care facilities in Melbourne, the Hunter region of New South Wales, and northern Queensland, March 2018 – June 2018. Participants: 1877 aged care residents and 1600 residential aged care staff. Main outcome measures: The Australian National Aged Care Classification (AN‐ACC), a casemix classification for residential aged care based on the attributes of aged care residents that best predict their need for care: frailty, mobility, motor function, cognition, behaviour, and technical nursing needs. Results: The AN‐ACC comprises 13 aged care resident classes reflecting differences in resource use. Apart from the class that included palliative care patients, the primary branches were defined by the capacity for mobility; further classification is based on physical capacity, cognitive function, mental health problems, and behaviour. The statistical performance of the AN‐ACC was good, as measured by the reduction in variation statistic (RIV; 0.52) and class‐specific coefficients of variation. The statistical performance and clinical acceptability of AN‐ACC compare favourably with overseas casemix models, and it is better than the current Australian aged care funding model, the Aged Care Funding Instrument (64 classes; RIV, 0.20). Conclusions: The care burden associated with frailty, mobility, function, cognition, behaviour and technical nursing needs drives residential aged care resource use. The AN‐ACC is sufficiently robust for estimating the funding and staffing requirements of residential aged care facilities in Australia.

Kathy Eagar · Rob Gordon · Milena F Snoek · Carol Loggie · Anita Westera · Peter David Samsa · Conrad Kobel

Meeting the need for culturally appropriate discussions regarding patient values and preferences at end of life Advance care directives are pre‐emptive discussions that anticipate a future loss of ability to make or communicate decisions. There is no uniformity in advance care directives in Australia, with each state or territory having differing terminologies and requirements.1 The Northern Territory has the lowest population density but the highest proportion of Aboriginal people of any Australian jurisdiction.2 In the NT, an individual can make a common law or statutory advance care directive,3 referred to as an advance personal plan (APP).4 The NT APP enables documentation of legally binding directives in reference to resuscitation and life support, as well as the appointment of substitute decision maker(s).5 We have previously documented the utility of the NT APP for Aboriginal people but highlighted the need for a more culturally appropriate document.6 For patients with life‐limiting diagnoses reviewed at Top End Health Service (TEHS) hospitals, the APP could previously be used in conjunction with a not‐for‐resuscitation form. TEHS and community‐based clinicians noted clear patient care imperatives for a move away from decisions targeted solely towards cardiac arrest. Expanding capacity based on a more patient‐focused goals of care (GOC) framework also aligned with expanding evidence in the literature in support of such a focus.7 In the NT, there has been growing recognition of the need for improved discussions regarding patient values and preferences regarding end of life, informed specifically by cultural understandings.6,8 An important example of this includes determination of the site of death; for many Aboriginal people from rural and remote regions, the land holds particular spiritual and cultural significance.8 For such patients, the need to “finish up” (a culturally appropriate term for death and dying) “on country” (ancestral lands) may be paramount and may take precedence over life‐prolonging treatments in tertiary centres.8 Exploring cultural requirements The TEHS GOC committee was formed in March 2017. This group had wide stakeholder engagement across three TEHS hospitals and included medical, allied health, administrative, nursing, primary health care and Aboriginal practitioner representation. Through the committee, the NT Department of the Attorney‐General and Justice was enlisted to assist in updating the APP (governed under the Advance Personal Planning Act 2013 (NT)). Officers representing the Attorney‐General worked with the GOC committee to explore the core cultural values to be reflected in an updated APP. A Palliative Care Australia document was used as reference material for these discussions.9 The APP is a territory‐wide document (unlike the GOC) and the Attorney‐General's office additionally undertook consultation in Central Australia. An updated APP was released in June of 2018.4 New questions asked in the section concerning values and preferences (Section B) include: Where would you like to die/finish up? If nearing death, what is unacceptable to you? If nearing death, what are your goals/priorities? After death, what is important to you? People completing the APP are now able to specify cultural rituals such as ceremonial smoking, or to make a request for their body to be returned to their birth country. The capability to provide advance directives concerning cardiopulmonary resuscitation (CPR) if appropriate and other life‐sustaining treatments, as well as to nominate substitute decision makers, was retained. The ability to nominate a substitute decision maker in the event of future impairment of capacity is of utmost importance in the NT, as unlike other Australian jurisdictions, the NT does not recognise default decision makers (next of kin or responsible person in other states and territories).3 An educational video was produced with involvement of rural Aboriginal APP champions to illustrate the method and advantages of completing an APP. The new GOC form (Supporting Information) was progressively released throughout the TEHS in 2018. The trigger for commencing GOC discussions is if the treating clinician feels that their patient may be in their last year of life (the “surprise question”). This includes patients with advanced malignancy, end‐stage organ failure, dementia or other progressive neurodegenerative conditions. It also includes specific reference to GOC in neonatal and paediatric patients. Uptake of the form in this patient population remains small but important. The resuscitation component of the GOC form documents the appropriateness of rapid response/code blue calls as well as ceilings of care (possible options range from full intensive care unit care to supportive and palliative care). This allows staff caring for dying patients outside the hospice setting to obtain immediate clinical support as required, irrespective of whether CPR is to be performed. The GOC form also allows people to document their wish to remain in their regional hospital for end‐of‐life care. The implications of this and inherent ceilings of care require detailed discussion with patients and family. The TEHS GOC form also requires the documentation of barriers to understanding, cultural responsibility and patient wishes. For some Aboriginal people, in certain instances, the patient may not be the key decision maker (despite having decision‐making capacity). The appropriate clinical information — the “right story” — needs to be provided to the appropriate person, usually referred to as the “right person”.6 The GOC form provides structured assistance to the completing clinician, to consider the involvement of Aboriginal liaison officers, interpreters and the culturally defined right people. Finally, it requires the completing clinician to consider whether the patient wishes to finish up on country. The revised NT APP and the GOC form were significant steps towards improved and patient‐focused end‐of‐life care. The working group also recognised that improved documentation required a more comprehensive strategy informed by data collection and research, and enriched by communications training for clinicians in order to be robust and capable of developing over time. Data collection and research In February 2019, Royal Darwin Hospital participated in a Commonwealth‐funded national study, led by Advance Care Planning Australia, which captured the prevalence of advance care directives and other types of advance care planning documentation in Australian health and residential aged care facilities.10 These data were useful to Top End clinicians regarding the impact of the recently introduced GOC framework. Health records of people aged 65 years and older who had been admitted for 48 hours were reviewed for advance care directives and medical orders or clinical care plans. The GOC forms are non‐statutory (not based in legislation) and were classified as medical orders. The prevalence of medical orders in audited health records at Royal Darwin Hospital was 46%. By comparison, the average prevalence of medical orders across all participating hospitals was 49%. The majority of these reflected either some limitation of treatments or were aimed at symptom control. A small number of patients (eight out of 50) had both an APP and a GOC plan. Only one document showed an incongruence between the APP wishes and the GOC wishes. This was related to the documentation of CPR provision in a patient who had stated in their APP that they did not wish to have CPR. Despite being only a single example, this discrepancy is consistent with findings elsewhere indicating that clinicians have a tendency to provide more care or more interventions than patients would choose were their wishes specifically discussed and followed.11 Communications training As part of the strategy to enhance the concept of shared decision making, which underpins patient‐centred care, the TEHS provided the first set of communications training workshops in March 2019. The workshops were iValidate (developed and delivered by Barwon Health) and Paediatric SimCom training (developed by Deakin University). Over 40 clinicians including nurses, doctors, allied health workers, Aboriginal health practitioners from hospital and community as well as primary health care practitioners attended the training. Additional Aboriginal and non‐Aboriginal participants were trained “on the run” as actors and helped to develop scenarios alongside experienced iValidate simulation actors. This enhanced the cultural context and the clinical authenticity of the scenarios used. Further workshops were held in June and a workshop was held in a regional hospital in November 2019. Facilitator training has also commenced in parallel to the communications courses in order to develop a local facilitator faculty enhancing the sustainability of the program. Next steps The development of a GOC framework and a culture of shared decision making is an evolving process. The next step is specific research on the effectiveness of GOC frameworks from the patient's perspective and the development of communications training that is increasingly informed by the concept of shared decision making. Significant areas that remain to be addressed include an improvement of the end‐of‐life experience on wards outside of the hospice, bereavement services within the hospital, mortuary services, and services to those who wish to die in regional hospitals, at home or on country.

Emma Spencer · Eswaran Waran