Legal issues in end-of-life care for speech-language pathologists and social workers: A scoping review

Abstract

Purpose

End-of-life law governs end-of-life decision-making in clinical practice. There has been little analysis of the specific legal issues relevant to allied health professionals working in end-of-life care.

Method

A scoping review was undertaken to identify and examine the extent, range, and nature of literature on the legal issues relevant to end-of-life practice for Australian speech-language pathologists and social workers, including current gaps. Literature was identified by searching six electronic databases, Google Scholar, the websites of relevant professional organisations and State/Territory health departments, scanning reference lists, and drawing on existing knowledge. Data charting and thematic analysis of findings was performed.

Result

Twenty documents were included, spanning various document types. Most focused on adult clinical practice. Documents demonstrated that the two professions encounter similar legal issues.

Conclusion

Key gaps exist in the literature. Findings will inform these professionals of the legal issues relevant to their clinical practice and inform the development of further resources.

Keywords:

• End-of-life care
• health legislation
• social workers
• speech-language pathology

Introduction

End-of-life law focuses on legal issues that govern end-of-life decision-making. Domains regulated include who can decide that life-sustaining treatment should be withheld or withdrawn, and on what basis. This includes formal advance care planning (ACP) processes to appoint a substitute decision-maker (SDM) or express decisions about future care prior to losing capacity. End-of-life law also includes the regulation of palliative care. Most countries have laws that formally regulate these kinds of decisions (Herring, 2020; Meisel et al., 2020; White et al., 2018; White & Willmott, 2018). Their broad function is to safeguard the interests of patients (including the ability to make decisions about their end-of-life care), protect doctors and health professionals who act within the boundaries of the law, and establish dispute resolution mechanisms where needed (White et al., 2021).

Australia has established laws to govern such decisions. These laws are complex and can be difficult to understand. The law that applies may differ depending on whether a person has capacity, and whether they are an adult or a child. The law also differs across Australia because each state and territory has its own legislation about key areas of end-of-life law e.g. guardianship and medical treatment legislation. Further complicating the application of end-of-life law in practice is that the types of legal issues encountered are likely to vary across professions due to differences in scope of practice.

Allied health professionals (AHPs) constitute a large and growing proportion of the Australian health workforce (Australian Institute of Health & Welfare, 2020). While there is little or no consensus on member disciplines, the term allied health here refers to university qualified health professionals other than doctors and nurses working in direct patient care roles (Pain et al., 2017). According to the Australian Health Practitioner Regulation Agency (Ahpra), AHPs comprise an estimated 27% of the Australian health workforce, making this the second largest health profession group after nurses and midwives (Australian Health Practitioner Regulation Agency, 2020). However, this figure is an underestimate as it excludes self-regulating health professionals including dietitians, audiologists, speech-language pathologists, social workers, orthotists/prosthetists, and others. AHPs provide end-of-life care across healthcare settings (specialist palliative care, acute, subacute, community care, residential aged care facilities), and play a key role in managing symptoms, maintaining function, optimising quality of life, and providing psychosocial support (Gravier & Erny-Albrecht, 2020; Morgan et al., 2019).

The law plays an important role in governing aspects of end-of-life care for AHPs, including determining whether a person has capacity for medical treatment decision-making, supporting a person to undertake ACP, or identifying a person’s SDM. Law also supports the provision of appropriate palliative medication. Research shows end-of-life law can be confusing for health professionals, with significant legal knowledge gaps among many doctors and nurses involved in end-of-life decision-making (White et al., 2014; Willmott et al., 2020). Though research has revealed similar legal knowledge gaps among Australian AHPs, it has also shown that they believe law has a place in clinical practice and decision-making, and AHPs want to learn more about the law (White et al., 2021). Knowledge of end-of-life law can facilitate AHPs’ confident decision-making and management of legal issues, leading to improved quality of care and practice.

While there is existing evidence in relation to doctors (and to a lesser extent nurses), the examination of specific legal issues that are relevant to AHPs is more limited. The purpose of this paper is to present a scoping review of the available literature exploring the legal issues relevant to practice in end-of-life care for Australian speech-language pathologists and social workers, including gaps in the literature. We chose to review the literature that relates to these professions only as it is not feasible to examine the volume of literature for all AHPs in a single review. Speech-language pathologists and social workers were chosen as they illustrate a range of legal issues that may be encountered by AHPs, they frequently deal with patients approaching the end of life, and they represent diversity in healthcare settings and scope of practice. For this review, end-of-life law refers to the legal issues that relate to end-of-life decision-making. This includes decisions that happen towards the end of life (or are more relevant at this time, such as decision-making capacity), as well as earlier ACP. It also includes the law relating to the provision of palliative care (including symptom management). Finally, where lawful, it would also include voluntary assisted dying (VAD). It excludes, however, more general legal issues such as medical negligence that apply to all health care provided throughout a person’s life.

A scoping review methodology was employed as the research aim was to identify and examine the extent, range, and nature of literature in this area; to summarise and disseminate findings of the literature; and to identify gaps in the existing literature. Further, it was anticipated that there would be relatively little literature on this topic and this approach enabled the inclusion of diverse document types. The review was conducted following Arksey and O’Malley’s five stage framework: identifying the research question; identifying relevant studies; study selection; charting the data; and collating, summarising, and reporting the results (Arksey & O'Malley, 2005).

Method

Research question

In accordance with the above methodology, the first step was to identify the relevant research question. For this study, it was: What is the extent, range, and nature of the published literature on the legal issues relevant to practice in end-of-life care for Australian speech-language pathologists and social workers?

Data sources

Scoping reviews may draw upon evidence from any type of literature to address the research question. This review aimed to identify relevant journal articles, books, professional documents, policy documents, grey literature (including theses and dissertations), reports, and fact sheets. It employed a three-stage process for identifying literature. First, a search of six electronic databases was conducted for English language records from inception to 15 March 2022. A keyword search was undertaken of comprehensive databases relevant to allied health research, namely Cumulative Index to Nursing and Allied Health Literature (CINAHL), ProQuest Central, PubMed, ScienceDirect, Scopus, and Web of Science. These databases were used in conjunction with Google Scholar, which in addition to scholarly literature has significant coverage of open-access publications such as government reports, content in online repositories, and some grey literature.

Second, the websites and apps of professional organisations/associations were searched for relevant content. They included, for example, the Australian Association of Social Workers, Palliative Care Social Work Australia, and Speech Pathology Australia. State and territory health department websites were also searched for relevant policy and other documents. In addition to using keyword searches, the publication and policy sections of websites were reviewed manually.

Third, other additional strategies were implemented to identify relevant literature. Reference lists of the included documents were searched for other documents that may have been missed. Potentially relevant documents known to the researchers were also considered.

Search strategy

A search strategy was developed and piloted to allow for refinement. The final search strategy for Scopus (the first database used) is in Box 1. See online Supplementary Material One for the search strategy for each database.

Box 1 Scopus search strategy.

1. TITLE-ABS-KEY (“social work*” OR “speech patholog*”)

2. AND (“end of life” OR “decision making” OR “medical treatment” OR “advance care directive” OR “advance directive” OR “advance care plan*” OR “palliative care” OR consent OR law OR legal)

3. AND Australia?

4. AND (LIMIT-TO (AFFILCOUNTRY, "Australia"))

The same words and phrases were entered into the search engines of the professional organisation/association and state/territory health department websites. Where supported by search functions, quotation marks were used to search for exact phrase matches.

Inclusion and exclusion criteria

Documents were included if they discussed legal issues relevant to end-of-life clinical practice for one or more of the included professions. To be included, documents also needed to be: Australian (or present specific findings for Australian participants); a scholarly work or appear in a scholarly publication (e.g. a journal article, academic text, thesis, or research report), or a professional or policy document; and written in English.

Documents were excluded according to the following criteria. Criterion 1: They related to health professionals or AHPs generally but did not explicitly refer to the included profession(s). Documents were also excluded if the included profession(s) were a minority of the participants and/or specific findings for these profession(s) were not drawn out. Criterion 2: Documents were excluded if they provided only cursory or superficial mention of legal issues, unless they identified important issues not mentioned elsewhere. Criterion 3: Subscription-based continuing professional development (CPD) materials were excluded. Criterion 4: Draft or rescinded documents were excluded. Criterion 5: Documents authored by the researchers that were related to this scoping review were also included(Feeney et al., 2021; Neller et al., 2022; White et al. 2021).

Study selection

Search strategies and results were saved, and citations were exported to the EndNote reference manager. Titles and abstracts were screened by two reviewers for their suitability, according to the inclusion and exclusion criterion. If the relevance of a document was unclear, then the full-text was obtained to facilitate a final determination about whether it should be included in the review. Full-text documents were also obtained and saved for all potentially relevant references. When the two reviewers disagreed upon inclusion/exclusion, the contentious document was discussed with other authors until a consensus was reached.

Data charting

A data charting template was developed based on the form described by Arksey and O’Malley (2005). The following information was recorded: citation, source (e.g. originating database/website), document type, study aim, research method and participants (where relevant), domain(s) of law addressed, and any other key findings. Data were extracted by two researchers from the included documents using this template.

Synthesis of results

Analysis was undertaken using a three-stage process. First, characteristics of the included documents were noted (see Supplementary Information for Tables 1–2), to identify the extent, range, and nature of literature in this area. Second, the content of the documents was systematically compared for common and recurring findings to establish similarities and differences across professions, and data were organised thematically into key categories relating to various legal domains. Relevant legal issues arising from within the documents were manually identified and coded by the first author and a second reviewer, with input from the co-authors as required. The grouping of domains draws on a comprehensive mapping exercise previously undertaken for a legal education program for clinicians (White et al., 2019). That mapping identified the following eleven (sometimes overlapping) domains: consent to treatment; decision-making capacity; withholding and withdrawing life-sustaining treatment; advance care planning; substitute decision-making; providing pain and symptom relief at the end of life; futile or non-beneficial treatment; emergency treatment; managing conflict/complaints and dispute resolution; children and end-of-life decision-making; and voluntary assisted dying. Third, gaps in the existing literature were identified, informing recommendations for further research and policy development.

Result

Search outcome

A total of 1668 records were identified through database searching (stage 1). During the website searches, 17 350 policies, directives, and professional documents were identified (stage 2). An additional nine records were identified through other sources (stage 3). After duplicates were removed, 14 215 unique database and website records remained. The screening and eligibility assessment process resulted in 14 204 records being excluded. Documents from state/territory health departments were most often excluded, because they related to health professionals or AHPs generally but did not present content specific to the included profession(s) and thus did not satisfy the first inclusion criterion. Documents were also often excluded under the second exclusion criteria (they did not explore in reasonable detail the legal issues relevant to practice in end-of-life care). Five subscription-based CPD materials and draft/rescinded documents were also excluded. This left 20 documents suitable for inclusion in the review. The process for identifying included documents is outlined in Figure 1.

Figure 1. PRISMA flowchart for document selection.

Extent, range, and nature of Identified Literature

The review identified 20 documents, representing a small but diverse body of literature on this topic. Documents concerned speech-language pathologists (n = 12) and social workers (n = 9); one document (Western Australia Department of Health, 2021) included content relevant to both professions. Included documents were scholarly works (n = 10), policies (n = 8), and other professional documents (n = 2; see Tables 1–2, Supplementary Material Two). They were most commonly journal articles (n = 7) or guidelines/clinical guidelines (n = 3). Less common document types were doctoral theses, research reports, health department reports, policy positions, position statements, guidance documents, standards, FAQ guidance documents, fact sheets, and health department CPD courses (n = 1 each). Journal articles were empirical studies (n = 2), review articles (n = 2), expert opinion pieces (n = 2), and case commentaries (n = 1). Similar numbers of scholarly works, policies, and professional documents were identified for each profession.

Overall, the documents varied in the extent to which they explicitly focused on legal issues in practice. Around a third had this as a primary or key focus, and another third discussed legal issues but this was not a central focus of the work. In the remaining documents, the authors did not explicitly discuss legal issues, rather these issues were identified by the reviewers during the screening and eligibility assessments. Many of these documents framed content as exploring complex clinical and/or ethical issues. Importantly, these findings suggest that some authors (practising AHPs and academics/researchers) may have difficulty recognising an issue as legal rather than ethical or clinical in nature. In this way, the role of law in clinical practice was at times invisible. The review identified documents that contextualised legal issues within end-of-life care and those that discussed relevant legal issues in a more general clinical context.

Documents tended to focus on clinical practice with adults (n = 16). Only one concentrated on paediatric clinical practice (Radford et al., 2020). The remaining three documents included some mention of paediatric practice but primarily focused on adults either explicitly or implicitly by the nature of their content.

Documents included different types of content on end-of-life law. As well as discussing legal issues in clinical practice (as summarised further in the following sections), they also explored the contexts in which these issues arise, empirical research on professionals’ legal knowledge and application of the law in practice, the relationship between professional practice/behaviour and the law, best practice for legal compliance, and specific legal issues about which professionals require further education and training.

Summary of findings

The following section summarises the literature by profession across five areas. First, because the available literature may not identify all relevant legal issues, we provide commentary on key legal issues for each profession. Second, we summarise the identified literature, describing the extent, range, and nature of literature for each profession. Third, we discuss the type(s) of content presented in the documents: whether they described the role that law plays in clinical practice (or detailed legal aspects of practice activities), presented empirical research revealing the relevance of legal issues, outlined the content of relevant law, and/or provided guidance on navigating legal issues (whether to individual clinicians or health services/systems). Some documents contained multiple types of content. Fourth, we classify common legal domains arising from the literature. Fifth, we identify gaps in the existing literature for example with respect to particular legal issues or document types.

Speech-language pathologists

Key legal issues relevant to speech-language pathologists

Speech-language pathologists support people with communication and/or swallowing difficulties (dysphagia) who are nearing the end of their life (Kelly et al., 2018; Queensland Health, 2020). Where a person has communication difficulties, speech-language pathologists may facilitate communication between relevant parties regarding the person’s decisions, values, and preferences for end-of-life care and may be informally involved in ACP (Kelly, 2019).

An important role performed by speech-language pathologists is advising on or contributing to capacity assessment when a person has communication difficulties (Chang & Bourgeois, 2020). Where a person lacks capacity and has an advance care directive, the situation may require a speech-language pathologist to decide whether to follow any relevant directions (e.g. relating to tracheostomy management or artificial nutrition or hydration [ANH]; Kelly et al., 2018; Queensland Health, 2020), based on an understanding of when advance care directives must be followed.

Speech-language pathologists are often involved in decision-making relating to dysphagia assessment and treatment (e.g. providing, withholding, or withdrawing ANH or texture-modified foods and thickened fluids; Queensland Health, 2020), and therefore need to understand when life-sustaining treatment can be lawfully withheld or withdrawn. Speech-language pathologists may, as part of the multidisciplinary team, contribute to assessments about whether treatments such as ANH are likely to be futile or non-beneficial (Kelly et al., 2018; Queensland Health, 2020).

While speech-language pathologists do not generally have formal roles under the various VAD acts across Australia, they may support a person with communication difficulties to have discussions about VAD and have their eligibility for VAD assessed (Department of Health & Human Services, 2019; Speech Pathology Australia, 2021; Western Australia Department of Health, 2021). They may also provide specialist advice to medical practitioners regarding capacity assessment for a person with communication difficulties and/or the appropriateness of self-administration of oral VAD medications for a person with dysphagia (Speech Pathology Australia, 2021).

Extent, range, and nature of identified literature for speech-language pathologists

Included documents (n = 12) were policies (n = 6, clinical guideline/guidelines, guidance documents, fact sheet, position statement), scholarly works (n = 5, journal articles and doctoral thesis), and a professional document (n = 1, CPD course; see Table 1, Supplementary Material). Four documents (Speech Pathology Australia, 2012, 2017, 2019, 2021) were policies from the national peak body, Speech Pathology Australia, while other policies were from State Health Departments (Department of Health & Human Services, 2019; Western Australia Department of Health, 2021). Of the scholarly works, two were related: one journal article (Kelly et al., 2018) being a narrative review conducted as part of a doctoral study (Kelly, 2019), which also included a review of the legislation, medicolegal and ethical literature, and two-round eDelphi questionnaire methodology. The other scholarly works were two expert opinion pieces (Radford et al., 2020; Serradura-Russell, 1992) and one case commentary (Smith & Kenny, 2015). Five documents (Queensland Health, 2020; Radford et al., 2020; Speech Pathology Australia, 2012, 2017, 2019) included discussion of legal issues related to paediatric clinical practice, with one (Radford et al., 2020) focusing on paediatric dysphagia.

Analysis of the literature.

Documents recognising the role that the law plays/identifying elevant legal issues

Ten documents (Kelly, 2019; Kelly et al., 2018; Queensland Health, 2020; Radford et al., 2020; Serradura-Russell, 1992; Smith & Kenny, 2015; Speech Pathology Australia, 2012, 2017, 2019, 2021) identified that the law plays a role in speech-language pathologists’ end-of-life care practice. Three scholarly works (Kelly, 2019; Kelly et al., 2018; Serradura-Russell, 1992) had a significant focus on the legal and ethical aspects of palliative dysphagia management. This included a doctoral thesis on the role of speech-language pathologists in palliative care (Kelly, 2019), its related journal article (Kelly et al., 2018), and a journal article on dysphagia management including for adults who lack capacity (Serradura-Russell, 1992). The other documents acknowledged that the law intersected with clinical practice but did not discuss this at length.

Several documents identified that speech-language pathologists must ensure that patients (or their parents or SDMs) consent to assessment and treatment, and decisions related to dysphagia management including ANH (Kelly, 2019; Kelly et al., 2018; Radford et al., 2020; Serradura-Russell, 1992; Smith & Kenny, 2015; Speech Pathology Australia, 2019). Related to this, three documents highlighted the importance of speech-language pathologists knowing if their patient has capacity to make these types of decisions (Kelly et al., 2018; Speech Pathology Australia, 2012, 2017). Documents emphasised that speech-language pathologists may contribute to capacity assessments for adults with communication difficulties (Kelly, 2019; Kelly et al., 2018; Speech Pathology Australia, 2017, 2019). They noted that speech-language pathologists need to understand who can consent to treatment for children, noting the relevant legislation in effect (Speech Pathology Australia, 2012) and considering the child’s age, maturity (Queensland Health, 2020; Radford et al., 2020), and presence of an intellectual disability or mental health concern (Speech Pathology Australia, 2012).

Where patients lack capacity, documents highlighted that speech-language pathologists need to know who the relevant SDM is in order to engage with the appropriate decision-maker (Kelly et al. 2018; Speech Pathology Australia 2012; Speech Pathology Australia 2017). Three documents flagged the need for speech-language pathologists to ascertain whether patients who lack capacity have an advance care directive (or other relevant ACP document), and whether such documents include statements relevant to speech-language pathologists e.g. relating to nutrition and hydration (Kelly et al., 2018; Queensland Health, 2020; Speech Pathology Australia, 2012). Speech-language pathologists also need to understand if any such documents apply and are relevant to the treatment decision or situation that has arisen.

Speech-language pathologists may have a role in supporting a person to undertake ACP involving decisions about future treatments such as oral and artificial nutrition and hydration, tracheostomy management, and communication supports or interventions (Kelly, 2019; Kelly et al., 2018). They may also be involved in ACP where patients have communication difficulties, implementing alternative and augmentative communication or other communication strategies (Queensland Health, 2020; Speech Pathology Australia, 2017).

Some included documents explored issues of futile or non-beneficial treatment. For example, ANH is often considered to be futile or non-beneficial for patients with end-stage dementia, given factors such as diagnosis and likely prognosis, and the potentially burdensome nature of the treatment (Serradura-Russell, 1992). Speech-language pathologists often reinforce medical assessments of futility in this area (Smith & Kenny, 2015).

A document from Speech Pathology Australia (2021) on VAD presented detailed information on speech-language pathologists’ scope of practice. It identified that this area of practice is governed by VAD legislation in the relevant jurisdiction and highlighted the need for speech-language pathologists to be familiar with this legislation.

Empirical research revealing relevance of legal issues

Only one empirical study was identified for speech-language pathologists (Kelly, 2019). A two-round eDelphi questionnaire was undertaken with practising speech-language pathologists to facilitate the development of consensus statements regarding the speech-language pathology role and practice activities of speech-language pathologists working in end-of-life care. This research revealed the importance of legal issues such as consent to treatment, decision-making capacity, and ACP. Speech-language pathologists endorsed their contribution to capacity assessment by providing information on a person’s communication skills, or how a patient’s communication difficulties may influence their capacity for informed consent and decision-making, while stressing the complex nature of capacity assessment and the need for input from a range of relevant health professionals. While few speech-language pathologists were involved in formal ACP processes, they reported wanting to be more involved in ACP, particularly facilitating communication about speech-language pathology treatment options, and assisting with the completion of ACP documents including advance health directives. Finally, speech-language pathologists endorsed the idea that particular swallowing assessments or interventions (e.g. videofluoroscopy, endoscopy) should be withheld if considered futile or overly burdensome in the end-of-life context.

Documents outlining the content of relevant law

Six documents (Kelly, 2019; Kelly et al., 2018; Queensland Health, 2020; Radford et al., 2020; Serradura-Russell, 1992; Speech Pathology Australia, 2021) outlined the content of relevant law. One document from Speech Pathology Australia (2021) presented information on the law related to VAD. It provided a general legal overview of VAD and aspects of the legislation relevant to speech-language pathologists (e.g. conscientious objection, communication accessibility for people seeking to access VAD). The remaining five documents outlined aspects of the law relating to palliative dysphagia management. The doctoral thesis on the role of speech-language pathologists in palliative care (Kelly, 2019) and a related journal article (Kelly et al., 2018) outlined relevant legislation and common law, and applied relevant legal concepts (e.g. capacity and consent, the status of nutrition and hydration as a medical treatment) to palliative dysphagia management. Another journal article (Serradura-Russell, 1992) considered the legal framework relevant to palliative dysphagia management, discussing (now superseded) legislation in South Australia related to advance care directives for people with terminal illness and implications of this legislation on clinical practice. The Queensland Health (2020) training on the role of speech-language pathologists in end-of-life care discussed consent, children and both end-of-life decision-making and futile treatment, and explored the Queensland law related to withholding and withdrawing ANH (as a “life-sustaining measure”). One paediatric document (Radford et al., 2020) included key statements about the law on children and end-of-life decision-making as background to their discussion of eating and drinking with acknowledged risk in paediatric palliative care. The document highlighted that the law supports parents to make treatment decisions for their non-competent child, but also discussed end-of-life decision-making by competent children (i.e. a Gillick-competent child, also known as a mature minor).

Guidance on navigating legal issues

The review identified five documents that provided guidance to speech-language pathologists on how to navigate specific aspects of end-of-life law related to palliative dysphagia management and VAD. Two policy documents from Speech Pathology Australia concerned dysphagia assessment and management, one of which included a section on palliative care (Speech Pathology Australia, 2012).

The position statement discussed navigating situations where patients choose not to follow speech-language pathology recommendations for texture-modified food, thickened fluids, and/or dysphagia management strategies, noting that this more commonly occurs where patients are receiving end-of-life care (Speech Pathology Australia, 2019). One document (Speech Pathology Australia, 2019) provided detailed guidance on processes to ensure that patients and/or their SDM make informed decisions in this area, including providing detailed information or education (possibly on multiple occasions), offering decision-making support, and reviewing changes in patient preferences and assessment/treatment options.

Three documents provided guidance to speech-language pathologists on VAD, including guidance on the roles and responsibilities of speech-language pathologists in the VAD process (Department of Health & Human Services, 2019; Speech Pathology Australia, 2021; Western Australia Department of Health, 2021). The Western Australia Department of Health Voluntary Assisted Dying Guidelines (Western Australia Department of Health, 2021) noted that speech-language pathologists do not have a formal role under the act but may be involved with VAD as part of a person’s broader healthcare team or by providing information or support at a patients’ request (Western Australia Department of Health, 2021). Identified roles for speech-language pathologists were to support people with communication difficulties to have conversations about VAD and to complete written declarations, as well as to provide specialist input into the assessment of decision-making capacity (Department of Health & Human Services, 2019; Speech Pathology Australia, 2021; Western Australia Department of Health, 2021). Speech-language pathologists may also assess a person’s ability to swallow, to help a medical practitioner determine the appropriateness of self-administration of oral VAD medications (Speech Pathology Australia, 2021). The Speech Pathology Australia document on VAD (Speech Pathology Australia, 2021) also provided information on credentialing requirements for involvement in VAD and information on conscientious objection to VAD (noting that some states only recognise the right of registered health practitioners—which speech-language pathologists are not—to conscientiously object to participating in VAD). The Victorian Department of Health policy document on VAD (Department of Health & Human Services, 2019) highlighted speech-language pathologists’ right to conscientiously object to involvement in aspects of patient care relating to VAD.

Common legal domains

The identified legal domains for speech-language pathologists were decision-making capacity (n = 10), consent to treatment (n = 9), substitute decision-making (n = 8), ACP (n = 7), futile or non-beneficial treatment (n = 6), withholding and withdrawing life-sustaining treatment (n = 5), children and end-of-life decision-making and VAD (n = 3 each). The speech-language pathology documents did not explore providing pain and symptom relief at the end of life, emergency treatment, or legal aspects of managing conflict/complaints and dispute resolution.

Gaps in the literature

Policy documents varied in the extent to which they provided guidance within the specific context of end-of-life care, and gaps were seen in relation to health department policies and broad practice guidelines on end-of-life care for speech-language pathologists. Documents focused on legal issues relevant to palliative dysphagia management, consistent with this being the main practice activity for many speech-language pathologists working in end-of-life care (Kelly, 2019). However, there was relatively little on legal issues relevant to supporting people with communication difficulties e.g. assessment of decision-making capacity and ACP. While several documents dealt with paediatric practice, only one focused specifically on this area of practice.

Social workers

Key legal issues relevant to social workers

Social workers in end-of-life care play a key role in enabling patients (and families, as appropriate) to make decisions, set goals of care, and exercise choice (Office of the Chief Health Officer, 2010; Queensland Health, 2018). As part of this they require an understanding of whether a person has decision-making capacity, rules around consent to treatment, and knowing who would act as a SDM if a person loses capacity (and who has authority if the patient is a child). Social workers may also ensure patients and SDMs have an adequate understanding of medical information to make informed decisions about care (Office of the Chief Health Officer, 2010). Social workers can have an important role in assisting with the ACP process, either as part of their usual role, or as dedicated ACP facilitators or case managers (Pockett et al., 2010; Queensland Health, 2018). ACP tasks performed by social workers include initiating conversations around end-of-life decisions (Office of the Chief Health Officer, 2010) and assessing readiness for ACP discussions (Queensland Health, 2018). Social workers may also help patients and their families to understand legal documents such as an enduring power of attorney (Queensland Health, 2018). Social workers may utilise their counselling skills to facilitate communication and decision-making processes between individuals, their families, and the treating team (Office of the Chief Health Officer, 2010; Pockett et al., 2010). Particularly important for social workers is the ability to navigate dispute resolution processes when conflict occurs, as it sometimes can when disagreement arises over treatment decisions.

Extent, range, and nature of identified literature

Included documents (n = 9) were scholarly works (n = 4, journal articles and reports), policies (n = 4, guidelines/clinical guidelines, policy positions, or standards), and other professional documents (n = 1, health department report; see Table 2, Supplementary Material). All but one of the documents (Palliative Care Social Work Australia, 2020) focused primarily on legal aspects of clinical practice with adults either explicitly or implicitly by the nature of their content. Of the scholarly works, two employed qualitative methods (focus groups), one used quantitative methods (data mining), and one was a review article. None were interventional studies.

Analysis of the literature.

Documents recognising the role that the law plays/identifying relevant legal issues

Three documents discussed the role that law plays in social workers’ end-of-life care practice. One document (Sanders, 1993) detailed legal aspects of practice activities related to substitute decision-making and ACP. Regarding ACP, social workers’ counselling and psychoeducation skills can be used to assist patients to understand and explore future health states and treatment options (Sanders, 1993). Social workers may discuss decisions with patients, working through patients’ emotional responses and those of family members (Sanders, 1993). In some cases, social workers may also explain or go through ACP documents with patients (Sanders, 1993). There was also discussion of social workers supporting SDMs with understanding their role, interpreting the person’s wishes, and making decisions confidently. Other aspects of the law dealt with to a lesser degree in the document included withholding and withdrawing life-sustaining treatment, managing conflict/complaints, and dispute resolution (Sanders, 1993).

The Australian Association of Social Workers’ Policy Position on VAD (Australian Association of Social Workers, 2020) highlighted that social work practice in Victoria and Western Australia needs to be informed by the applicable VAD legislation, and also identified other related legal issues such as end-of-life decision-making, ACP, substitute decision-making (e.g. enduring power of attorneys), and withdrawing life-sustaining treatment.

Empirical research revealing relevance of legal issues

The fact that social workers’ scope of practice intersects with the law was also revealed from three empirical studies. In two focus group studies, social workers saw ACP as being central to their role (Boddy et al., 2013). This was echoed by other health professionals who also perceived that social workers have a key role in initiating ACP activities (Boddy et al., 2013). Social workers reported encouraging completion of ACP documents (Tilse et al., 2011) and clarifying with patients the purpose of different document types (Boddy et al., 2013). Some social workers felt that they were more often involved in ACP in complex cases (e.g. where there was a crisis or sudden need to undertake ACP, where there were concerns about appointed decision-makers; Tilse et al., 2011). Social workers were also seen as having a role in preventing conflict by optimising communication and decision-making processes between patients, families, and treating teams, and advocating on behalf of patients and/or families (Pockett et al., 2010). Social workers were involved in consensus building in situations where differing views impacted treatment plans (Pockett et al., 2010), as well as mediation between parties where required.

Documents outlining the content of relevant law

There were three documents (Australian Association of Social Workers, 2020; Pockett et al., 2010; Sanders, 1993) presenting this type of information. One document (Sanders, 1993) primarily set out the content of the law, seeking to review and compare laws relevant to guardianship, substitute decision-making, and ACP in Victoria and New York State. Another document (Pockett et al., 2010) included key statements about the law on guardianship and substitute decision-making as background to their empirical work on social work interventions for patients nearing the end of life. Last, the Australian Association of Social Workers’ Policy Position on VAD (Australian Association of Social Workers, 2020) highlighted social workers’ right under the legislation to conscientiously object to involvement in VAD-related aspects of patient care.

Guidance on navigating legal issues

The review identified five documents that provided guidance on how to navigate specific aspects of end-of-life law. These policy documents were written for various audiences, including individual clinicians and the social work profession (Australian Association of Social Workers, 2020; Palliative Care Social Work Australia, 2020; Queensland Health, 2018; Western Australia Department of Health, 2021) and/or health services or systems (Office of the Chief Health Officer, 2010; Queensland Health, 2018).

One broad policy document was the Palliative and End of Life Care Social Work Standards (Palliative Care Social Work Australia, 2020), which set out practice-based competencies for individual social workers who provide end-of-life care in Australia. It also detailed the social work role and scope of practice, and provided a framework to guide best practice. The document referred to all the legal areas identified in this review except for emergency treatment and providing pain and symptom relief.

Two documents provided guidance to social workers on VAD as a relatively new area of practice. The Australian Association of Social Workers’ policy position (Australian Association of Social Workers, 2020) provided some guidance for social workers, albeit relatively limited, on the implications of VAD legislation on their practice in Victoria and in Western Australia. It also provided guidance on how social workers may work through ethical issues related to practice in this area. The Western Australia Department of Health VAD guidelines (Western Australia Department of Health, 2021) clarified the roles and responsibilities of social workers in relation to VAD. It noted that social workers may be involved with VAD as part of a person’s broader healthcare team rather than having a formal role under the act. Social workers may support a person seeking to access VAD, including helping to determine whether they are acting voluntarily and without coercion in requesting access to VAD (Western Australia Department of Health, 2021). They may also provide information on VAD at the patients’ request (Western Australia Department of Health, 2021).

The ACP clinical guidelines from Queensland Health (2018) included content relevant to several health professionals including social workers, outlining their roles and responsibilities within the ACP context, procedural guidance on undertaking ACP, and best practice principles for ACP. The guidelines also provided high-level guidance to Queensland Hospital and Health Services regarding best practice principles for services and the development of local ACP policies and procedures.

Finally, a report on conflict resolution in end-of-life settings (Office of the Chief Health Officer, 2010) developed and prioritised recommendations for best practices to prevent, mitigate, and manage these conflicts within the hospital setting, thus providing guidance at the level of health services or systems. Social workers were mentioned in several of the strategies/interventions, consistent with their acknowledged role in preventing and resolving end-of-life conflict. A broad recommendation was made for earlier and more frequent access to and involvement of social workers in end-of-life settings. Particular areas for social work contribution were proposed, including identifying the need for and introducing early end-of-life discussions between the treating teams and families, and coordinating staff case and family conferencing meetings (and following up with families between family conferences). It was also recommended that social workers have a role in resolving communication issues and conflict by facilitating interactions between treating teams and families, and providing counselling where needed.

Common legal domains

Within the social work documents, legal domains were ACP (n = 5), substitute decision-making (n = 4), withholding and withdrawing life-sustaining treatment, managing conflict/complaints and dispute resolution, VAD (n = 3), consent to treatment, decision-making capacity (n = 2), futile or non-beneficial treatment and children and end-of-life decision-making (n = 1).

Gaps in the literature

The social work documents did not explore legal aspects of emergency treatment or providing pain and symptom relief at the end of life, consistent with the social work scope of practice. However, there were also genuine gaps where relevant legal domains were discussed only minimally in the literature. For example, only one document explored children and end-of-life decision-making, and this was not the document’s primary focus. Given the key legal issues for social workers in this practice area, there was relatively little guidance on managing conflict/complaints and dispute resolution, or detailed profession-specific information on legal aspects of ACP. Documents outlining the content of relevant law were also scant.

Discussion

This scoping review was undertaken to identify and examine the extent, range, and nature of the literature on the legal issues relevant to practice in end-of-life care for Australian speech-language pathologists and social workers. It also summarised findings from the literature and identified current gaps. Twenty documents were eligible for inclusion, including policies, scholarly works, and other professional documents. A similar number of documents were identified for both professions.

Documents highlighted the relevance of the law to clinical practice in end-of-life care for speech-language pathologists and social workers. Both speech-language pathology and social work documents covered most of the identified domains (8/11 and 9/11 respectively, see Table I). Legal domains common to both professions were consent to treatment, decision-making capacity, withholding and withdrawing life-sustaining treatment, ACP, substitute decision-making, futile or non-beneficial treatment, children and end-of-life decision-making, and VAD. The identified domains correspond well with the end-of-life care activities undertaken by the two professions (Gravier & Erny-Albrecht, 2020).

Table I. Frequency of legal domains in included documents, by profession.

This scoping review identified gaps in the existing literature regarding legal issues in end-of-life care for the professions. Not all the identified documents explicitly framed content as exploring legal as opposed to complex clinical and/or ethical issues, suggesting that the role of law is not always recognised even when legal issues are being discussed. It is vital that AHPs know that the law is relevant to this area of practice and understand when there is a legal issue. There is a need for expanded discussion of what role law plays in end-of-life care, relevant legal domains, the context in which issues arise, and legal roles played by AHPs. Further development of profession-specific policy documents on end-of-life care, including discussion of the relevant law, is recommended for these professions. Broad practice guidelines on end-of-life care have not been published for speech-language pathologists despite calls for such documents (Chahda et al., 2017; Kelly, 2019; Kelly et al., 2018). There were relatively few policy documents specifically written for social workers (two of the four policies included were written for a broader health professional audience). Documents outlining the content of relevant law for social workers were scant.

The included documents did not cover the full range of relevant legal domains identified by the authors, as they did not explore legal aspects of emergency treatment or providing pain and symptom relief at the end of life. These domains were likely not addressed due to lack of relevance. However, there were also relative gaps. First, few documents specifically related to paediatric clinical practice, highlighting the need for more guidance in this area as the law on end-of-life decision-making for children is different from the law for adults (White et al., 2018). Second, there were relatively few documents on ACP for both professions. Third, as VAD has now been legalised in all Australian states, additional literature will be required to support AHPs in this emerging area of practice.

Implications

There is a need for AHPs working in end-of-life care to have increased awareness of the law that affects their practice. These professionals should, at a minimum, know that end-of-life law is relevant to their clinical practice, recognise what the relevant legal issues are, understand broad legal principles that apply to their clinical practice, and know how to access accurate information on the law when it is needed. Findings of this review can be used to identify ways in which authors of relevant scholarly, policy, and professional documents may better assist AHPs to understand the law relating to end-of-life care. Document authors need to recognise and present relevant issues as being legal in nature (rather than just ethical or clinical), to facilitate the appreciation of legal roles played by these professions. AHPs would benefit from an expanded discussion in the literature of what role law plays in end-of-life care, relevant legal domains, the context in which legal issues arise, and guidance regarding how to navigate legal issues in practice. We echo the call by Kelly et al. (2018) for collaboration between health and legal professionals when generating guidance in this area, given the complexity of the law and the need to provide AHPs with accurate information.

The current review highlighted that AHPs encounter specific legal issues. To enhance AHP’s knowledge of end-of-life law, education and training initiatives (as part of undergraduate degrees and in CPD) should be tailored to the issues encountered by each profession. There are also key areas of overlap across professions, e.g. in relation to ACP, and in these areas education and training may be best oriented within a multidisciplinary context. An example of such training is an Australian federally funded project: End of Life Law for Clinicians (ELLC). ELLC is a free training program for AHPs about the law relating to end-of-life decision-making and provided the basis for the legal mapping exercise used to evaluate the sample literature (see Disclosure Statement).

Strengths and limitations

The scoping review methodology allowed for synthesis of findings from a range of document types, providing a broad overview of the topic. A comprehensive approach to identifying literature was adopted, consistent with the methodological framework of Arksey and O’Malley (Arksey and O'Malley 2005). This process involved searches of six electronic databases, Google Scholar, the websites of relevant professional organisations and state/territory health departments, and the reference lists of the 20 included documents. It also involved reviewing literature known to the researchers and colleagues working in the field. A further strength is that we provided commentary on key legal issues for each profession, based on our expertise as allied health and legal researchers working in the end-of-life field. This commentary will inform speech-language pathologists and social workers of the legal issues relevant to their clinical practice, and enabled us to identify gaps in the existing literature on particular legal issues.

This review also involved some limitations. Our focus on Australian documents and use of profession-specific search terms is likely to have limited the number of documents identified. While this approach best aligned with our aim of identifying legal issues specific to these groups within the Australian legal context, we acknowledge that some international documents, or those aimed at a broader health professional audience, may have been of relevance. Variations in document types, aims, and research methods meant this scoping review could only undertake descriptive and thematic analyses. Coverage of legal domains was based on the proportion of documents that discussed the domain and did not account for the extent of discussion within each document. However, broad similarities and differences were able to be identified, and these methods were sufficient to achieve the aims of the review. Last, consistent with the scoping review methodology (Arksey & O'Malley, 2005), formal critical appraisal of the quality of included documents was not undertaken.

What this review adds to existing knowledge

The specific legal issues that are relevant to AHPs working in end-of-life care is a neglected area of research. This review identified a small body of literature on the legal issues relevant to practice in end-of-life care for Australian speech-language pathologists and social workers. This literature included scholarly, policy, and other professional documents. Documents presented different types of content on end-of-life law and addressed a range of legal issues. The review demonstrated that these allied health professions encounter both common and unique legal issues. Insights into gaps in the literature are relevant to researchers and policymakers, highlighting important areas for further research and policy development. Recommendations regarding education and training should also be of interest to educators in the field. While the review concerned Australian literature, broad findings may apply to other common law jurisdictions with similar health systems.

Conclusion

This article reviewed the extent, range, and nature of literature on the legal issues relevant to practice in end-of-life care for speech-language pathologists and social workers in Australia. The review identified a small but diverse body of literature, with 20 documents identified for inclusion in the review. Documents concerned speech-language pathologists (n = 12) and social workers (n = 9), with one document containing content relevant to both professions. Included documents were scholarly works (n = 10), policies (n = 8), and other professional documents (n = 2). Document types were similar across the professions.

Documents included different types of content on end-of-life law and varied in the extent to which they explicitly focused on legal issues in practice. Many of the documents explicitly framed content as exploring legal issues, however, in some instances legal issues were identified by the researchers. The review identified documents that contextualised legal issues within end-of-life care, as well as those that discussed relevant legal issues in a more general clinical context.

Documents demonstrated that the two professions largely encounter common legal issues, namely consent to treatment, decision-making capacity, withholding and withdrawing life-sustaining treatment, ACP, substitute decision-making, futile or non-beneficial treatment, children and end-of-life decision-making, and VAD. Some legal issues may have not been addressed due to a lack of relevance for these professions. However, there was also evidence of relative gaps in the literature on specific legal topics (e.g. children and end-of-life decision-making).

Existing gaps in the literature identified by this review can inform recommendations regarding development of further literature to support these health professionals. AHPs would benefit from an expanded discussion of what role law plays in end-of-life care, relevant legal issues in this area of clinical practice, the context in which issues arise, and legal roles played by these professions. To identify and discuss relevant legal issues, there is a need for document authors to recognise when issues are legal in nature (rather than ethical or clinical), to be able to convey the content of the law accurately, and to be able to provide guidance on applying the law in practice. To best assist AHPs working in this field, there is a need for legal issues to be contextualised to the end-of-life care setting. The development of broad practice guidelines on end-of-life care is recommended for speech-language pathologists. Further, the small number of documents specifically relating to paediatric clinical practice highlights the need for more guidance in this area, as the law on end-of-life decision-making for children is different from the law for adults.

Acknowledgements

The authors would like to acknowledge the research assistance of Samantha Wooding and Bianca Bachman, who assisted with the study selection and data charting processes. The authors also acknowledge Penny Neller’s suggestions on this paper.

Disclosure statement

We disclose that BW and LW (with others) were funded to develop End of Life Law for Clinicians (ELLC) and that RF is employed on ELLC. This is a free training program designed to enhance health professionals’ knowledge of end-of-life law. BW and LW (with a colleague) also developed a free website designed to support enhanced knowledge of end-of-life law by health professionals (and others): End of Life Law in Australia (https://end-of-life.qut.edu.au/). We disclose that RF and BW (with another colleague) provided expert peer review on one of the documents included in this review (Queensland Health, 2020). The authors declare no other potential conflicts of interest with respect to the research, authorship, and publication of this article.

Data availability statement

Additional information regarding the findings presented can be requested from the first author.

Additional information

Funding

Research assistant support for this review was supported by the Queensland University of Technology under the Australian Centre for Health Law Research Law Early Career Researcher Research Assistant Funding Scheme (HL20_15).