Ethics

Objectives: To assess catch‐up vaccination of older children and adolescents during the first two years of the “No jab, no pay” policy linking eligibility for federal family assistance payments with childhood vaccination status. Design, setting, participants: Cross‐sectional analysis of Australian Immunisation Register data on catch‐up vaccination of children aged 5 to less than 7 years before (January 2013 – December 2014; baseline) and during the first two years of “No jab, no pay” (December 2015 – December 2017), and of children aged 7 to less than 10 years and young people aged 10 to less than 20 years (“No jab, no pay” period only). Main outcomes: Catch‐up vaccination rates for measles–mumps–rubella vaccine second dose (MMR2), by age group, Indigenous status, and socio‐economic status; catch‐up vaccination of children aged 5 to less than 7 years (third dose of diphtheria–tetanus–pertussis vaccine [DTPa3], MMR1), before and after introduction of “No jab, no pay”. Results: The proportion of incompletely vaccinated children aged 5 to less than 7 years who received catch‐up DTPa3 was higher under “No jab, no pay” than during the baseline period (15.5% v 9.4%). Of 407 332 incompletely vaccinated people aged 10 to less than 20 years, 71 502 (17.6%) received catch‐up MMR2 during the first two years of “No jab, no pay”, increasing overall coverage for this age group from 86.6% to 89.0%. MMR2 catch‐up activity in this age group was greater in the lowest socio‐economic status areas than in the highest status areas (29.1% v 7.6%), and also for Indigenous than for non‐Indigenous Australians (35.8% v 17.1%). MMR2 catch‐up activity in 2016 and 2017 peaked mid‐year. Conclusions: Linking family assistance payments with childhood vaccination status and associated program improvements were followed by substantial catch‐up vaccination activity, particularly in young people from families of lower socio‐economic status.

Brynley P Hull · Frank H Beard · Alexandra J Hendry · Aditi Dey · Kristine Macartney

Publicly funded reproductive carrier screening programs must weigh up a number of ethical considerations Reproductive genetic carrier screening (RCS) is undertaken by individuals or couples to determine their likelihood of having a child with particular autosomal recessive or X‐linked genetic conditions. It can be undertaken by anyone of reproductive age who wishes to have it, regardless of their family history or ancestry, and either before or during pregnancy.1 Some forms of RCS are currently available in Australia on a user‐pays basis, costing around $400–$500 per person. It is usually accessed via general practitioners but can also be accessed directly from testing companies.2 People who receive an increased chance result are offered genetic counselling to explore their reproductive options, which might include steps to avoid having a child with a genetic condition. Taking the test before pregnancy gives those with an increased chance result a wider range of reproductive options compared with prenatal testing.3 The Australian Reproductive Genetic Carrier Screening Project (Mackenzie's Mission), announced by federal Health Minister Greg Hunt in 2018, is a research project offering RCS to 10 000 Australian couples. Recruitment via participating health professionals commenced in late 2019. Mackenzie's Mission is gathering evidence — including clinical, laboratory, psychosocial, health economic and ethical aspects — to inform how publicly funded screening could be operationalised in Australia within ten years.4 Here, we reflect on the ethical implications of RCS in Australian health care.5 While the issues raised apply to all types of RCS, we focus on aspects relating to large scale, publicly funded initiatives like Mackenzie's Mission. Ethics and the goals of RCS A central ethical issue for large scale RCS initiatives is how their goals are described. Two main foci for articulating the goals of such programs are (i) outcomes for individuals and their families, such as reproductive autonomy; and (ii) outcomes for populations, such as reduced incidence of certain genetic conditions. It has been argued that a goal of seeking to reduce the population incidence of babies who will develop severe genetic conditions is inappropriate for RCS.6 This line of reasoning draws partly on concerns about perceived coercion; when RCS is offered routinely, couples may perceive that participating is the right thing to do, even if testing is optional.7 Additionally, such a goal might be interpreted as implying that couples who receive an increased chance result are then obliged to take action to avoid the birth of an affected child. Any future national program must be delivered as a genuinely optional intervention, respecting couples’ values and preferences. It has also been argued that the goal of reducing the incidence of certain genetic conditions in the population expresses an unfavourable judgement about the value of the lives of people who currently live with such a condition.8 Therefore, in the case of RCS it is considered more ethically acceptable for a program's stated aim to be aligned with the first set of outcomes mentioned above; namely, to support couples’ reproductive autonomy through provision of relevant information to enable choices that are consistent with their values.1 RCS programs are also motivated, at least in part, by the desire to mitigate harms that couples who have parented a baby or child with a severe or fatal genetic condition experience. These harms include the grief of losing a child or witnessing one's child suffering. RCS might enable some parents to avoid such distressing experiences. Emphasising the severity of a condition included in a screening program arguably lessens any implied negative judgement about people living with genetic conditions screened for. However, ethical debate on what constitutes a severe or serious condition remains ongoing.9 Ethical aspects of gene selection A significant component of designing a publicly funded RCS program is determining which genes warrant inclusion for testing.10 Since screening can be stigmatising for people living with the genetic conditions screened for, it is considered most ethically defensible to screen only for genes associated with severe childhood‐onset conditions.1,3 However, because perceptions surrounding seriousness and severity are not purely objective,9 any RCS program must carefully weigh the diverse ways in which a condition can present, as well as the implications of that condition for the person and their family. There are also ethical aspects regarding the classification of gene variants identified during the testing process.11 There can be a degree of uncertainty as to how strongly a particular variant is associated with a genetic condition, an issue compounded in population screening because there is no index case (proband) to facilitate interpretation. This has ethical implications because reporting a variant as disease‐causing when it is not may mean a couple will experience additional uncertainty and perhaps go through unnecessary tests or interventions. On the other hand, not reporting a variant that does turn out to be disease‐causing means a couple may go on to have a child with a serious condition despite receiving a low chance result from RCS. This issue will remain important for some time, especially as variant databases are still developing. Consent for RCS: enabling meaningful choices Whether and how to gain consent can be contentious in many public health screening programs.12 While both consent and pre‐test education are important for RCS,1 determining how best to do this can be complex. It has been argued that when screening is perceived as routine, people will be less likely to reflect critically on whether it is appropriate for them, or to consider whether the results will be relevant to their decision making.7 Support for pre‐test decision making such as educational videos and decision aids can help couples consider the implications of an increased chance result and their options for reproduction. Mackenzie's Mission is one of several large scale population‐based RCS initiatives globally that have curated large panels of genes to test using a couple‐based model.5,10,13 It is important for participants to understand that RCS is designed to provide the couple with information that might help with decisions about reproduction, rather than to convey genetic risk information for their own health. Participants will also be encouraged and supported to reflect on their values and their goals for testing, to help them decide whether this screening will be useful or important for them.14 Reporting results: ethical implications Results of any genetic test can be complex and might be uncertain.15 As such, results from RCS need to be provided in a way that is meaningful and useful. To optimise the utility of their results, participants will require a basic understanding of key concepts such as what it means to carry a recessive genetic condition, and the implications of an increased chance finding. It is also important to ensure that participating in screening is not interpreted as guaranteeing that someone will have a healthy child. Publicly funded population RCS globally is tending towards reporting couple‐based findings. Evidence suggests that participants understand and accept this approach and that it is feasible as a population screening model.5,13,16 Mackenzie's Mission participants will be informed when they both carry the same disease‐causing variant for an autosomal recessive condition, or when the genetic mother is found to carry one of the X‐linked conditions screened for. Reporting only couple‐based findings is justifiable from an implementation perspective, for both programmatic and pragmatic reasons. Programmatically, RCS aims to inform reproductive choices, so it provides couples with information relevant to those choices. Any potential for false reassurance can be carefully addressed during the pre‐ and post‐test education processes. Pragmatically, publicly funded RCS would be prohibitively expensive to offer if it reported individual carrier results, as the majority of individuals screened are likely to be a carrier for something.16 Each of these people would then need individual follow‐up, despite their future offspring having a very low chance of actually having that autosomal recessive condition, even if they were to re‐partner.17 Moreover, this information has no clinical utility for the individual's own health. It also has the potential to provoke anxiety. As such, it is premature and potentially inequitable to provide individuals with information relating to their individual carrier status without providing further support. Further research will inform considerations of the ethical and psychosocial aspects of using an RCS framework to report individual results, including the possibility of offering individual results for a limited number of the more prevalent conditions on the panel. Public funding How RCS is funded is also ethically relevant, not least due to the perceived endorsement of screening by the state when a program is publicly funded. A formal, publicly funded, screening program may have advantages,18 but public funding might also carry tacit value implications. Experience with antenatal screening suggests that blame and guilt can be associated with declining an offer of screening.19 Funding models can also reinforce routinisation, where a screening offer might be perceived as encouraging or even coercing couples to terminate a pregnancy if a genetic condition is identified in the fetus.7 Within public funding structures, ethical issues also arise from the mode of offer of RCS, either in the context of a formal population screening program (likely to be delivered by centralised, publicly funded entities) or via a Medicare item number. Provision via Medicare will allow any provider who can meet the item number requirements to offer the test, and as such is likely to attract a greater commercial presence in RCS. The resulting fragmentation might constitute a lost opportunity for uniform evaluation of program effectiveness and might also give rise to inconsistencies in aspects of test provision, such as counselling. On the other hand, provision through Medicare may also enable RCS to be rolled out more quickly than establishing a formal population screening program. Cost‐effectiveness of population‐wide RCS has not yet been established conclusively by the existing evidence;11 however, one of the aims of Mackenzie's Mission is to generate such evidence for the Australian health care system. RCS and community values Underlying these ethical considerations is the question of how RCS reflects societal values. While most people are likely to agree on core principles such as respecting couples’ choices about whether to participate in screening, there will also be variations in preferences between communities, families and individuals.20 Future delivery of a national RCS program in Australia will need to recognise and respond to this diversity, while also upholding the values that motivate the program. The central values for RCS in Australia are good health outcomes for families and communities, alongside respect for all Australians, equity in program design and delivery, and reproductive autonomy.

Lisa Dive · Ainsley J Newson

Professional codes of conduct expressly proscribe entering into a sexual relationship with a current patient, but the position is less clear concerning former patients

Jenni Millbank

Enhancing clinical trial recruitment through eConsent has potential but needs more evidence of use Consent for medical interventions or clinical research participation currently relies on the use of printed information combined with a conversation with a health care professional, which is largely undocumented. Studies have shown that few participants are truly informed at all using these traditional means, and have demonstrated that recall or comprehension of what was disclosed is poor.1,2,3 Attempts to develop standardised participant information and consent forms (PICFs) that meet ethical requirements have often resulted in longer and more complex documents. While consumers have been engaged to assist with these programs, the purpose of PICFs is still too heavily weighted toward satisfying regulatory requirements rather than patient information needs. Unsurprisingly, data show that, as PICFs get longer, they are less well understood,4,5 and there is evidence that this is one of the reasons why patients do not agree to participate in clinical research.6 eConsent is not simply a conversion of a paper PICF into an electronically delivered version. It also holds the promise of improving participant engagement in clinical trials through a variety of features that include: the use of multimedia tools to enhance comprehension; ready conversion into multiple languages; a means to track consent in a highly portable manner; and the opportunity to provide information in a more convenient way to persons with an inability to attend clinics. The use of eConsent does not replace the opportunity for participants to ask direct questions to their doctor or the investigators. Moreover, in most instances, participants will still be required to make a physical visit to a clinic to receive their treatment, whereupon they can ask questions and confirm their willingness to participate. There are relatively few studies using eConsent. In an early randomised controlled study, there was a preference for eConsent as well as improved comprehension and intention to participate in people assigned to use computer terminals rather than paper to receive information.7 In a more recent study involving people infected with human immunodeficiency virus,8 eConsent was found to be acceptable and had some advantages over paper information sheets. There were a majority of males included in the study (75%), and more than half were African American, with a mix of sexual orientation. Health literacy of participants was the only factor that emerged as having an impact on comprehension; however, the number of participants (n = 20) is too small to draw statistically sound conclusions. A 2013 study tested comprehension and satisfaction when using iPads to deliver information for a neuropathy in chemotherapy study.9 Importantly, the investigators presented the same information in both formats, but the iPad had an initial video outlining the main features of the study. They found that of the 55 patients who took part in the randomised study, there was a statistically significant association with increased comprehension in the group assigned to the iPad. The sample sizes were too small for definitive findings, but of interest was that use of the iPad did not increase likely participation rates (it was slightly lower). All participants advised that the information provided was still too complex regardless of the media used, and that simplified text, diagrams, animations and other ways to enhance comprehension are needed. A recent study reported on the TransCelerate eConsent Initiative, which employed a large survey of 3045 participants and a number of smaller stakeholder consultations.10 While there was general support by potential participants for the use of eConsent, the survey revealed that people living in the European Union had the greatest level of discomfort with it. In this survey, they also found that people were concerned that eConsent might eliminate site/participant discussion regarding participation, even though this is not the case where it has actually been used. In Australia, there has not been widespread use of eConsent to date. To better understand the Australian context, Clinical Trials: Impact and Quality (CT:IQ) — a cooperative funded by MTPConnect, an Australian Government Industry Growth Centres Initiative, using funds from the federal government's Medical Research Future Fund (MRFF) — set out to investigate stakeholder perceptions of eConsent and, therefore, to identify potential actionable insights. Chrysalis Advisory developed a survey that was sent via email to the members of CT:IQ for distribution to the wider clinical trial sector in the first quarter of 2019. A total of 179 participants completed the survey and as we used a snowball methodology, there is no denominator of persons polled. In addition, there were 19 semi‐structured interviews conducted drawn from the CT:IQ membership. The majority of respondents (68%) were women, 75% were aged 40 years or over, and 80% had more than 10 years of working in trials, demonstrating considerable experience in the sector. The full report is available on the website,11 with the questions presented on pages 58–59 of the report. The key findings are summarised in the Box. We specifically surveyed those deploying eConsent at this stage and not the end users because we wished to understand what the sector was already doing and what the perceived barriers and opportunities were. Although only 29.2% of respondents indicated that they had any direct experience with eConsent, our survey revealed that they were overall cautiously positive toward the use of eConsent. An important finding was that there was optimism that use of electronic formats would enable participants to drive the information‐seeking process in a way that best suited their needs. The physical infrastructure, particularly in some public hospitals, was widely held as not being adequate to support eConsent uptake. Wi‐Fi blind spots within hospitals were cited as a major reason for this, as well as difficulties achieving infrastructure updates within the public health system. Respondents recommended that approaches to eConsent should employ technologies that do not rely on expensive infrastructure delivered by health services. In addition, respondents indicated that, ideally, there should be a sector‐wide standard for site information technology infrastructure requirements combined with clear guidance for sponsors to standardise their approaches. A number of interviewees who had worked on trials with eConsent where sponsors had provided devices noted that the devices were clunky and prone to malfunction, which increased overall study time and burdened trial staff. Clinical trial sites often experienced sponsors insisting on their own standards, resulting in unnecessary duplication or incompatibility of instrumentation at sites. Many respondents cited that differences in the use of eConsent platforms and inconsistencies between organisations regarding eConsent compliance (eg, whether participants would be required to sign electronically, or would be able to consent by using technologies such as face recognition, fingerprint identification etc) made it difficult to adjust to the use of eConsent. Greater industry engagement and collaboration may mitigate this barrier by providing stakeholders with frameworks and support to implement eConsent. Furthermore, setting some national guidelines will facilitate the design, regulatory approval and implementation of strategies to adopt eConsent. While some stakeholders identified data security as a risk associated with eConsent, others did not believe security threats were any greater than similar threats to existing digital technologies in use throughout clinical trials and the medical field more broadly. They suggested that when appropriate security systems are in place and data governance risks are managed, stakeholders were not likely to be concerned about data governance risks for eConsent. Using eConsent does not automatically mean that participants will have the ability to provide consent offsite, simply that they have access to the information offsite. This is no different from participants providing wet ink signatures offsite in terms of risk and the fact that a person comes to a clinic and accepts the study treatments is a clear demonstration of consent. Two‐factor authentication processes enabled by eConsent may provide a more robust means to authenticate consent than current paper‐based processes. It was not surprising that eConsent was considered to add a cost burden over and above a paper‐based approach. However, few of the respondents considered the cost savings made through enabling prior reading of relevant documentation and, in particular, the major cost savings for the site and for the participants this could potentially deliver. A respondent from a large cancer centre articulated the potential benefits by outlining how participants from anywhere outside of a 50 km radius of the tertiary centre could avoid additional time needed in the clinic through being able to use eConsent. This centre is piloting a tele‐trial model to deliver trials in non‐tertiary settings and recognises that eConsent is pivotal to enabling this model, which promises to reduce the burden on patients through reducing their need to travel and to ensure that clinical trial participation is more available beyond metropolitan centres. It appears from our survey that Australia is willing but only partially ready to implement eConsent. The pathway forward will require proactive planning, leading and managing organisational change with the creation of practical demonstration cases of the development, delivery and use of eConsent in the clinical trial setting vital to support wider adoption. CT:IQ is now looking at a program to undertake these pilot projects as part of its initiatives to enhance clinical trial capability across Australia and in other jurisdictions. Box – Key findings of the eConsent survey Barrier Finding Problems with using paper‐based information sheets and consent forms 38% of respondents thought paper consent forms were not a problem, 71.5% thought they were too long, and 62% found them too complex 37.4% of respondents thought paper‐based consent impaired participant comprehension 67% of respondents believed eConsent would improve comprehension, although they did not believe that this would necessarily translate into greater recruitment 59.2% of respondents believed there was a significant issue with providing adequate information to people from culturally and linguistically diverse populations and saw eConsent as a solution to this Perception that regulators, HRECs and hospital governance offices will not accept eConsent 40.8% of respondents believed that ethics committees would not approve use of eConsent, 26.8% were unsure 90.5% of respondents found it necessary to have guidelines for use by both researchers and HRECs Patients will not be sufficiently proficient with technology or have access to suitable devices Certain demographics (eg, older people) were considered likely to struggle with eConsent eConsent was likely to be well received by younger generations Health services lack the infrastructure to deliver eConsent 82.7% of respondents identified a lack of IT infrastructure as a critical barrier to overcome 59.2% indicated that the current infrastructure was inadequate, particularly within hospital sites Difficulties with authentication of individuals and data security 46.3% of respondents believed there would be issues with data governance, security and privacy, but 29% of respondents disagreed with this 59.2% of respondents felt that they would lose the ability to ensure that the person signing the eConsent was actually the participant, the remainder were undecided or felt this was not a problem Lack of consistent practice across the sector 67% of respondents identified a lack of standardised guidelines as a significant barrier to success 49.2% of respondents indicated that staff were able to manage eConsent despite the lack of training and standardised guidance eConsent will be more expensive 60.3% of respondents believed that there would be a significant initial cost, which might be a barrier to uptake HRECs = human research ethics committees; IT = information technology.

Nikolajs Zeps · Nicholas Northcott · Leanne Weekes

The medical profession has the opportunity to prevent further harm to patients and damage to public trust

Cherrie Ann Galletly

To the Editor: In their recent article, Ioannidis and Boyack focused on the misuse of author‐ and journal‐based metrics.1 The “predatory and other easy journals” they allude to are becoming increasingly difficult to distinguish2 in a widening continuum of journal quality that is seeing some overlap between predatory journals and indexed (eg, in Web of Science, Scopus or PubMed) journals that are traditionally perceived to be of peer‐review quality and whose scholarly content has been editorially authenticated.3 This increasing overlap between predatory and indexed journals is accentuated by an increasing lack of reproducibility, often revealed through post‐publication peer review of indexed journals.4 Predatory journals may also seek scholarly validation by allowing citation of their papers to infiltrate supposedly reputable databases.5 However, the continued inability to identify such journals invalidates calls to ban such entities or to not cite papers from currently blacklisted predatory journals, as was recently suggested by the International Committee of Medical Journal Editors.6 Increasing retractions in the biomedical literature as a result of post‐publication peer review — which identifies errors and misuses such as the manipulation of citations discussed by Ioannidis and Boyack, including inflated and coercive self‐citation— affect author‐based metrics and journal‐based metrics differently. It is incumbent upon authors, editors and publishers to correct inflated, skewed or distorted author‐ and journal‐based metrics. To achieve this, retractions need to be destigmatised. Moreover, inflated author‐ and journal‐based metrics (eg, H‐index, Journal Impact Factor [Web of Science Group], CiteScore [Elsevier]) need to be adjusted with corrective, but not punitive, measures, to correct for imbalances and unfair rewards that may be associated with the attribution of citations of retracted (and thus potentially invalid) literature.7 Self‐citations that support stated claims are valid, independent of their number, and involve no ethical breaches. However, the misuse of self‐citations to manipulate author‐ and journal‐based metrics, such as citation cartels,8 raises ethical red flags. Independent of the possible ethical parameters of inflated or coercive self‐citation, such metrics can also be adjusted downwards to reflect the more balanced perspective of an author‐ or journal‐based metric.9 If the identity of predatory journals can be clearly determined and unanimously agreed upon, then the journal‐based metrics of valid, indexed scholarly journals that cite such journals should be adjusted accordingly.

Jaime A Teixeira da Silva

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

E thics in palliative care: a complete guide

Gin S Malhi

Objectives: To assess the numbers of notifications to health regulators alleging sexual misconduct by registered health practitioners in Australia, by health care profession. Design, setting: Retrospective cohort study; analysis of Australian Health Practitioner Regulation Agency and NSW Health Professional Councils Authority data on notifications of sexual misconduct during 2011–2016. Participants: All registered practitioners in 15 health professions. Main outcome measures: Notification rates (per 10 000 practitioner‐years) and adjusted rate ratios (aRRs) by age, sex, profession, medical specialty, and practice location. Results: Regulators received 1507 sexual misconduct notifications for 1167 of 724 649 registered health practitioners (0.2%), including 208 practitioners (18%) who were the subjects of more than one report during 2011–2016; 381 notifications (25%) alleged sexual relationships, 1126 (75%) sexual harassment or assault. Notifications regarding sexual relationships were more frequent for psychiatrists (15.2 notifications per 10 000 practitioner‐years), psychologists (5.0 per 10 000 practitioner‐years), and general practitioners (6.4 per 10 000 practitioner‐years); the rate was higher for regional/rural than metropolitan practitioners (aRR, 1.73; 95% CI, 1.31–2.30). Notifications of sexual harassment or assault more frequently named male than female practitioners (aRR, 37.1; 95% CI, 26.7–51.5). A larger proportion of notifications of sexual misconduct than of other forms of misconduct led to regulatory sanctions (242 of 709 closed cases [34%] v 5727 of 23 855 [24%]). Conclusions: While notifications alleging sexual misconduct by health practitioners are rare, such misconduct has serious consequences for patients, practitioners, and the community. Further efforts are needed to prevent sexual misconduct in health care and to ensure thorough investigation of alleged misconduct.

Marie M Bismark · David M Studdert · Katinka Morton · Ron Paterson · Matthew J Spittal · Yamna Taouk

To the Editor: The use of Bluetooth‐enabled apps like Australia's COVIDSafe to contact trace people exposed to coronavirus disease 2019 (COVID‐19) raises challenging moral and public health questions. Leins and colleagues1 rightly note that such tracing may endanger human rights. Yet the ethical decisions for governments and citizens are complex. The absence of vaccines and effective treatments, and the significant asymptomatic transmission of SARS‐CoV‐2, compels reliance on traditional tactics of social distancing, quarantine and contact tracing.2,3 Although the added value of digital contact tracing over manual tracing remains uncertain, even marginal improvements may interrupt disease transmission, save lives and improve public health resourcing. This could especially benefit vulnerable and disadvantaged people who suffer disproportionate harms,4 without treating digital contact tracing as a “silver bullet”. Whether, and which, digital contact tracing options are warranted depends on tough cost–benefit judgements. COVIDSafe's centralised storage of data on Amazon's servers facilitates access by governments with extraordinary power to interfere in citizens’ lives. Alternatively, decentralised data storage on smartphones has privacy advantages — but providing individual app users with the discretion to act on notifications of potential exposure to COVID‐19 may compromise disease control efforts. A hard choice exists between allowing personal data to be accessible by democratically elected governments versus powerful technology giants like Apple and Google which support decentralised data storage.5 Even greater invasions of privacy have been proposed, however, with location tracking options such as Norway's Smittestopp app (https://helsenorge.no/coronavirus/smittestopp) promoted as necessary to understand community interactions and the effects of social distancing policies for current (and future) outbreaks. While Leins and colleagues highlight significant ethical drawbacks, a full ethical analysis of digital contact tracing must also weigh its potential benefits. Certainly, citizens should agitate for strong protections to prevent abuse of power and misuse of personal information. However, even when governments offer ethically suboptimal contact tracing options, it may be permissible and even a moral requirement, all things considered, for citizens to support options to help protect the community. For its part, the Australian government should recognise that deploying digital tracing without sufficient transparency and community and expert input leaves citizens with harder moral decisions.

Simon Coghlan · Marc Cheong · Benjamin Coghlan

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

This case study highlights some important legal and ethical considerations related to advance care planning A 71‐year‐old man with vascular risk factors including hypertension and hypercholesterolaemia lived at home with his wife and enjoyed reading, listening to music and discussing global issues. Immediately on disembarkation from a long flight, he experienced a sudden reduction in consciousness with accompanying right hemiplegia and neglect. He was diagnosed with a large left middle cerebral artery infarct and underwent thrombolysis. Following the procedure, he was haemodynamically unstable, with further investigation revealing massive pulmonary emboli. He was anticoagulated and his condition stabilised. Over subsequent days, his hemiplegia improved, and it was felt that with time and ongoing therapy he would be able to stand independently and mobilise with assistance. Unfortunately, he remained severely globally dysphasic and this was considered unlikely to improve. He was unable to feed himself but was easily fed thickened fluids by nursing staff. He had documented an advance care plan (ACP) 5 years before his stroke. His ACP stated that in the event of impairment rendering him “incapable of rational existence” he would not want to be kept alive via artificial means but rather be allowed to die free of pain and distress. About 3 months before his stroke, he updated his ACP to include an advance care directive (ACD) stating what mattered most to him, as well as his worries for the future. His greatest concern was that he might “linger on in a home, with unacceptable quality of life”. He stated that “acceptable quality of life has at its core the ability to understand one's circumstances, to be able to communicate with other people, the ability to be mobile and not being reliant on others for the basics of life such as having to be washed, dressed and fed”. If he was not able to do these things, his wishes were that he be allowed to die as quickly and peacefully as possible. His ACD specifically stated that if he was “in advanced stages of Alzheimer's disease or other incurable, advanced dementing disease and if my appointed health care agent concludes after consultation with my primary health care provider that I am unable to make informed decisions about my health care, and I am unable to feed myself, continuing life would have no value for me”. In that situation, he directed that all life‐prolonging therapies should be withdrawn, including “the provision of nutrition and hydration whether provided artificially or medically or by hand or by assisted feeding”. The ACD was even more explicit about this as it included the directive that “if I am suffering from advanced dementia and appear willing to accept food and fluid by hand offered by assisted or hand feeding, my instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth”. When his lack of cognitive recovery was apparent, his wife, as his appointed medical treatment decision maker, was concerned that his wishes, as specified in the ACD, were not being honoured and queried whether he should continue to be fed by hand. Given the complexity of the situation, a palliative care consultation was sought, along with guidance from representatives of the hospital's clinical ethics committee, including the Chief Medical Officer, legal counsel and representatives from involved clinical teams. Ultimately, the decision was made in close consultation with his wife to respect his ACD. His anticoagulation was ceased and food and fluid discontinued. He died 4 days later, about one month after his stroke. Discussion Our patient had a very clear, and as it transpired, remarkably prophetic ACD. The question as to whether his desire to refuse oral intake was something his treating teams were legally and ethically obligated to follow is worthy of further consideration. The Medical Treatment Planning and Decisions Act 2016 (Vic) came into effect in Victoria in March 2018.1,2 The Act seeks to provide a single framework to ensure that medical treatments align with an individual's preferences in the event that they are unable to make decisions for themselves. The Act supports ACPs that can incorporate the creation of an ACD, as well as the appointment of a medical treatment decision maker to act as a surrogate decision maker should decision‐making capacity be lost. An ACD can contain: instructional directives, which, if a person lacks decision making capacity, take effect as if the person had consented to or refused a specific medical treatment; and/or values directives, which are broader and can encompass desires, worries and acceptable outcomes. Palliative care is defined in the Act to include medical treatments aimed to relieve suffering, as well as the reasonable provision of food and water, which is generally accepted to exclude artificial hydration or enteral feeding.3 To ensure that dying patients receive appropriate end‐of‐life care, the Act distinguishes palliative care from other medical treatments in two ways. First, it specifically prohibits making an instructional directive refusing palliative care. Any statement in an ACD relating to palliative care is given the status of a values directive, meaning the statement can guide but not mandate decisions. Second, the Act allows a clinician to provide palliative care even if this may not align with a patient's wishes and/or the medical treatment decision maker does not agree. Following his stroke, our patient was assessed to lack decision‐making capacity in relation to feeding. His apparent acceptance of supported feeding was therefore not considered an informed decision and thus his ACD and medical treatment decision maker provided the most appropriate guide to future health care management. When considering whether his treating teams were legally obligated to follow his directives in relation to refusal of oral intake, the following would seem pertinent. His wishes in relation to oral input were very specific and labelled as instructional. Although these statements were written in relation to deterioration in the setting of dementia, it would be difficult to argue that his wishes would not also apply in the context of his stroke with its resulting profound disability and dependence. Despite being designated instructional, the directives probably constituted a refusal of reasonable food and water and thus of palliative care. Under the Act, these can be values directives only, and while the team must take patient preferences into account, the directive would not be binding. Although the Act does therefore appear to allow the treating team to override an individual's wish not to be fed, the law provides little assistance regarding the circumstances in which this would be ethically permissible. Published guidance for clinicians faced with this specific situation is very limited. Although there is literature discussing the clinical and ethico‐legal issues associated with voluntarily stopping eating and drinking,4,5,6,7,8 this is typically in the context of someone whose decision‐making capacity was intact at the time of commencement. There is conflict in the literature regarding the ethics and legality of ACDs that request the cessation of handfeeding in progressive dementia.5,9,10,11 In our patient's case, although the directives were not legally binding, the health care team felt that the ACD, along with his wife's input, was the best guide to appropriate care provision, particularly when it became increasingly likely that he would not regain his previous cognitive abilities. Ultimately, regardless of the instructional or values‐based designation of his written instructions, there was uniform agreement that he could not have made his wishes any clearer, and accordingly this was respected. This case holds some important lessons for patients writing ACDs and for their health care providers. First, had our patient's directives been less detailed, or had he been admitted to an alternative health care setting with different ethical or religious values, support for his refusal of feeding may not have been regarded as acceptable practice. This might have led to mandated ongoing oral feeding, which may have led to significant conflict between the health service and our patient's wife, and considerable distress for all involved. Second, the case highlights the importance of adequate education for clinicians guiding, and the public completing, ACPs. Third, while the law provides some guidance to clinicians regarding the refusal of palliative care, including food and water, each case will require careful individual consideration and reflection on the different ethical issues at play. Finally, while every state and territory of Australia recognises ACDs in either legislation or case law, differences exist across jurisdictions in how they are recognised and interpreted. Importantly, although there is scope to give effect to an ACD created in another jurisdiction, had our patient's flight arrived in a different state than where he resided and completed his ACD, this would have added another layer of legal complexity given that Australia does not have a unifying legal framework for the application and interpretation of ACDs.12

Peter Eastman · Danielle Ko · Brian H Le

Differences between general practice and hospital settings have ethical and legal implications for teachers and learners

Michaela Kelly · Nancy Sturman · David Pakchung

Memoir of an accidental ethicist: on medical ethics, medical misconduct and challenges for the medical profession

Gin S Malhi

To the Editor: Nearly all industries profit from today's 25 million slaves and 150 million child labourers.1 The results of their work, including medical disposables, are sold worldwide. Unfortunately, there is not a comprehensive analysis identifying exactly where slaves are involved in the medical products supply chain. From the hazardous work forging surgical instruments in Pakistan to the manufacture of gloves in Malaysia,2 slavery permeates the manufacture and supply chains of medical products. Slaves are involved in the direct manufacture of medical products and in the generation of raw materials used to make medical devices, including cotton, rubber and metals.3 Some companies, have made a public effort to review their supply chains;4 however, many organisations are failing to monitor human rights abuses in their supply chains.5 As countries legislate Modern Day Slavery Acts, a few companies are moving to eliminate slavery. As an act of radical transparency in the long‐discussed issue of child labour in the cocoa industry, in 2017, Nestlé published the number of child labourers aged 5–17 years known to be working on cocoa farms that supply their cocoa.6 Nothing similar to Nestlé's effort has been done in the medical industry. However, notable efforts to regulate procurement have been demonstrated in the United Kingdom and Sweden.2 Few health professionals are responsible for the direct sourcing of medical products. Nonetheless, when speaking with managers, executives, and representatives of medical suppliers, we have the opportunity to share our concerns for the origins of the products we use. While a conversation with a medical representative on this topic may demonstrate scant knowledge of the manufacturing processes of the goods they are selling, that initial conversation is an important first step towards transparency, and we know that the influence of health professionals on industry is significant.7 Modern slaves are forced to work under threat of harm or by coercion or deception. Unable to refuse or leave, they earn little to no pay for extensive working hours in unsafe conditions, which may cause injury, sickness and, at times, death. Reports of harassment are common. In the medical industry, we must do all we can to address modern slavery because, above all, we should “first do no harm”.

Sharon Sitters

Inclusion of the right to health in Queensland's Human Rights Act is historic but not without challenge In February 2019, the Queensland Parliament passed the Human Rights Act 2019, which took effect on 1 January 2020. Its introduction makes Queensland the third Australian jurisdiction to implement human rights legislation, after the Australian Capital Territory and Victoria in 2004 and 2006, respectively. While the Queensland Act is based on a model of rights legislation broadly consistent with the Victorian and ACT models, it differs in its inclusion of the right to health services (section 37): Every person has the right to access health services without discrimination. A person must not be refused emergency medical treatment that is immediately necessary to save the person's life or to prevent serious impairment to the person.1 The inclusion of section 37 is historic. The right to health is made subject to law on Australian shores and a state/territory government is finally accountable, by law, to protect and promote the enjoyment of the highest attainable standard of physical and mental health. Rights language is part of Australia's public health vernacular, evidenced by the Australian Charter of Healthcare Rights.2 However, unless such rights are expressed in domestic law, then right to health principles and policies are important words on paper without overt legal consequence for effective monitoring and accountability.3,4 As Australia lacks a legal tradition regarding the right to health, the introduction of section 37 creates interpretive challenges for the new Queensland Human Rights Commission (QHRC). The right to health has received limited robust attention in both Australian schools of public health and law, as well as in Australian public health‐related literature.5 The QHRC, and Queensland's courts and tribunals, will likely look to United Nations (UN) commentary on the right to health, and to overseas jurisprudence and scholarship for guidance on section 37's emergent framing.3,6 With the right to health found in over 100 national constitutions and the UN Special Rapporteur on the right to health issuing annual reports, guidance is available.7,8 Health service obligations and remedies under the new Act Queensland government departments and public employees will have a responsibility to protect and promote the human rights of Queensland individuals, and in their health service delivery and decision making, act in a way consistent with their obligations under the Act.1 Health agencies that fit the Act's “public entity” criteria are also bound to comply with the Act. If an individual alleges a section 37 violation, they should make a complaint to the government agency or public entity, which must respond within 45 business days.1,6 If an inadequate or no response is received, the individual — or two or more people jointly — can lodge a complaint with the QHRC.1 Given that the Act's regulatory model favours discussion, rights awareness raising and education, the QHRC will aim to pragmatically resolve section 37 disputes. Monetary damages will not be available.6 In the case of judicial review, a person might have the original decision quashed or referred back to the original decision maker for redetermination.6 In certain circumstances, pending legal advice, a section 37 complainant might have grounds to pursue a distinctly separate medical negligence cause of action if a health professional or service provider breaches their common law duty of care and the complainant has sustained pain and suffering, loss or injury.9 Some grievances against health service providers (notably private providers) can continue to be dealt with by the Health Ombudsman under Queensland's Health Ombudsman Act 2013, and the QHRC may indeed refer complaints to the Health Ombudsman (with the complainant's consent).1,10 However, potential complainants under either Act should be aware the objectives of both Acts markedly differ. The Health Ombudsman Act emphasises that the health and safety of the public are paramount, thereby framing health through a health security lens at the population level, whereas the Human Rights Act takes an individual level approach: the enjoyment of the highest attainable standard of physical and mental health of each and every person in Queensland is paramount (Box 1). Additionally, the Health Ombudsman Act does not recognise the special importance that human rights — and by extension, health and human rights and accessible, non‐discriminatory health service provision — has for Queensland's Aboriginal peoples and Torres Strait Islander peoples.1 On this point, there is no reason why the definition of health services in section 37(1) could not be interpreted to integrate a culturally responsive meaning for Queensland's Indigenous peoples, consistent with the UN Declaration on the Rights of Indigenous Peoples (Box 2).11 Interpreting section 37 and health rights protections found elsewhere in the Act The Act takes a narrow approach to interpreting the right to health Section 37 is modelled on the right to health in article 12 of the International Covenant on Economic, Social and Cultural Rights.12 The UN Committee responsible for the Covenant stated in General Comment No. 14 that article 12 contains two elements: the right to access health services; and the right to access the underlying determinants of health, or the underlying factors that promote conditions in which people can lead a healthy life.3 Regarding the first element of what accessible, non‐discriminatory health services might look like for section 37 achievement, General Comment No. 14 provides the QHRC with instruction (Supporting Information).3 The Queensland Parliament has clarified it will only adopt the first element of article 12 of the International Covenant, which protects right to health service access; section 37 will not extend to include Queenslanders’ right to the broader health determinants. By limiting section 37 to questions of access to emergency medical treatment and non‐discriminatory health service provision, Parliament cautiously chose not to conflate the parameters of section 37. For some right to health academic specialists, this measured approach is prudent.13 Although section 37 claims are not to incorporate the determinants of health, complainants may nevertheless lodge separate or concurrent claims that capture certain health determinants, such as the right to culture (sections 27 and 28). Public health practitioners are well aware that culture is a significant health determinant.14 Housing is also a major determinant of health, and a housing rights claim (that causally impacts a claimant's health and wellbeing) might be realised under section 24 (property rights). Claims that seek to protect and promote the rights of individuals and communities to access the determinants of health relating to food and water could be sought under the right to life (section 16). This is because, per the explanatory notes to the Human Rights Bill 2018 (Qld), this right reflects the positive obligation on states “to take positive steps to protect the lives of individuals through, for example … positive measures to address other threats to life such as malnutrition and infant mortality” (emphasis added).6 With this in mind, section 16 allegations that identify a compelling food or water security nexus that threatens the right to life could be made. However, the QHRC can refuse to deal with a complaint it considers “frivolous, trivial, vexatious, misconceived or lacking in substance”.1 The protection of other health rights elsewhere in the new Act As highlighted above, the content of section 37 claims will likely raise other rights contraventions. It is foreseeable, for example, that a section 25 right to privacy breach by a health service provider could directly or indirectly create a section 37 access to health service violation (and vice versa). Further, a section 37 contravention, or its ramifications, may be so egregious that the complainant could rationally argue that they have experienced a breach of their section 17(b) right not to be treated in a cruel, inhuman or degrading way by the health service. Section 17(c) also protects and promotes an individual's health and human right to “not be … subjected to medical or scientific experimentation or treatment without the person's full, free and informed consent”.1 Certainly, in some cases, a fine line will arise between informed consent to medical treatment and health service access under section 37. The Act also covers reproductive health and rights. Section 106 clarifies that the Act “does not affect laws about termination of pregnancy”, thereby referring to and upholding the Termination of Pregnancy Act 2018 (Qld). According to Queensland Health, that Act “ensures termination of pregnancy is treated as a health issue rather than a criminal issue” and “supports a woman's right to health, including reproductive health and autonomy”.15 Final comments Queensland Health already has antidiscrimination policies and protocols for its staff and for its patients and clients. Therefore, compliance with section 37 and the Act's wider provisions should not be onerous for government and many other public health service agencies bound by the new Act. However, if international right to health experience can teach Queensland anything, it is that government response to allegations of section 37 violations should not be reactive and visible at QHRC conciliation meetings alone.4 Advancing the right to health for all Queenslanders will not occur in legal silos but in complement with planned educational and promotional activities that help build a culture in the Queensland public sector and broader community that respects and promotes health and human rights, as well as promotes a dialogue about the nature, meaning and scope of health rights for Queensland's most important asset, its human capital.1,6 This will require the engagement of both government and non‐government stakeholders, as well as community members, beyond the health sector. Box 1 – Objectives and principles of the Human Rights Act 2019 (Qld) and Health Ombudsman Act 2013 (Qld) Human Rights Act 2019 Health Ombudsman Act 2013 Main objects: section 3* Main objects: section 3 † to protect and promote human rights; and to help build a culture in the Queensland public sector that respects and promotes human rights; and to help promote a dialogue about the nature, meaning and scope of human rights. to protect the health and safety of the public; and to promote— professional, safe and competent practice by health practitioners; and high standards of service delivery by health service organisations; and to maintain public confidence in the management of complaints and other matters relating to the provision of health services. Preamble* Paramount guiding principle: section 4 † In enacting this Act, the Parliament of Queensland recognises— The inherent dignity and worth of all human beings. The equal and inalienable human rights of all human beings. Human rights are essential in a democratic and inclusive society that respects the rule of law. Human rights must be exercised in a way that respects the human rights and dignity of others. Human rights should be limited only after careful consideration, and should only be limited in a way that can be justified in a free and democratic society based on human dignity, equality, freedom and the rule of law. Although human rights belong to all individuals, human rights have a special importance for the Aboriginal peoples and Torres Strait Islander peoples of Queensland, as Australia's first people, with their distinctive and diverse spiritual, material and economic relationship with the lands, territories, waters, coastal seas and other resources with which they have a connection under Aboriginal tradition and Ailan Kastom. Of particular significance to Aboriginal peoples and Torres Strait Islander peoples of Queensland is the right to self‐determination. The main principle for administering this Act is that the health and safety of the public are paramount. Without limiting subsection (1), the health and safety of the public is the main consideration for— the health ombudsman, when deciding what relevant action to take to deal with a complaint or other matter; and the director of proceedings, when deciding whether to refer a matter to QCAT; and QCAT, when deciding a matter referred to it under this Act. QCAT = Queensland Civil and Administrative Tribunal. * Reproduced from https://www.legislation.qld.gov.au/view/html/asmade/act-2019-005;8 † Reproduced from https://www.legislation.qld.gov.au/view/html/inforce/current/act-2013-036.10 Box 2 – The right to health: article 24 of the United Nations Declaration on the Rights of Indigenous Peoples* Indigenous peoples have the right to their traditional medicines and to maintain their health practices, including the conservation of their vital medicinal plants, animals and minerals. Indigenous individuals also have the right to access, without any discrimination, to all social and health services. Indigenous individuals have an equal right to the enjoyment of the highest attainable standard of physical and mental health. States shall take the necessary steps with a view to achieving progressively the full realization of this right. * Reproduced from https://www.un.org/development/desa/indigenouspeoples/wp-content/uploads/sites/19/2018/11/UNDRIP_E_web.pdf.11 Declarations are not ratified. Adopted by the UN General Assembly on 17 September 2007. Supported by the Australian Government on 3 April 2009.

Claire E Brolan

Genetic research with Indigenous Australians is achievable with community engagement and appropriate governance mechanisms in place

Steven YC Tong · Heather D'Antoine · Melita McKinnon · Kyle Turner · Maui Hudson · Ngiare Brown · Jonathan R Carapetis · Dawn C Bessarab

Variation in Australian law concerning self-binding directives for mental illness is unnecessarily complex for clinicians

Katrine Del Villar · Christopher J Ryan

To the Editor: In their Perspective article, Mitchell and colleagues1 discuss the problems for patients resulting from overcautious attitudes in prescribing opioids within the constraints of the doctrine of double effect. In doing so, they also highlight how problems may be compounded by the inappropriate use of language in respect to voluntary assisted dying. Victoria has passed and is now implementing the Voluntary Assisted Dying Act 2017, not “assisted suicide” legislation. Like so much of the language we use, there are underlying, negative connotations to certain words. The use of the term “suicide” in the context of a person living with a terminal or serious and incurable condition that can only be relieved through death conflates two very different realities. One is the understandable or rational desire to avoid the trajectory of escalating suffering at the end of life, while the other is the tragedy of suicide resulting from social, financial or mental health conditions that culminate in feelings of abjection and of hopelessness towards the future. The focus of the authors of this article is both positive and welcome; assuring practitioners that they can adopt a proactive and patient‐centred approach towards pain relief. However, the use of language in this instance is unfortunate, as it has often been employed cynically to undermine the iterations of voluntary assisted dying Bills across Australia. Other common documented examples are referring to voluntary assisted dying as killing, murder, or state‐sanctioned murder — actions involving violence and malicious intent. Voluntary assisted dying is a managed and documented pathway embarked on by a person with decision making capacity to achieve a peaceful death on their own terms. Suicide, on the contrary, is a tragedy, usually undertaken alone as a violent and desperate act, including by people who have no legal recourse to voluntary assisted dying. It leaves a legacy of complicated grief for loved ones. Language is important. Without careful reflection, it can easily be used to subvert good intentions, including legal reforms. It can thereby thwart the will of the people — a perfect storm indeed.

Julia M Anaf

Section 8 is an unwarranted infringement on communication between health practitioners and their patients

Bryanna Moore · Courtney Hempton · Evie Kendal

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