JCPSLP Vol 17 Supplement 1 2015_lores

Ethics and dysphagia management

A reflection on ethical policy development A case example of a hospital patient with dysphagia Helen Smith and Christina Wilson

The Speech Pathology Australia Code of Ethics challenges speech pathologists to incorporate ethical practice into all aspects of their professional roles. Policy development and implementation may be part of a speech pathologist’s role particularly in institutional settings. This article illustrates, using a case example of a gentleman with dysphagia, a number of models which may assist speech pathologists and their colleagues to reflect ethically during policy development, implementation and sustenance processes. I n this issue’s “ethical reflection” we wish to consider tools that may assist speech pathologists in facilitating ethical policy development and implementation. The Speech Pathology Australia Code of Ethics (SPA, 2010) challenges speech pathologists to provide quality services not only to individuals but also to communities and service providers. According to the Code of Ethics, one of the ways speech pathologists meet ethical responsibilities is by contributing to the development of employers’ policies and procedures that relate to the provision of high-quality, efficient and effective services. Policy development and implementation have the potential to impact not just on individual clients but on whole organisations and client groups (Frolic, Drolet, Bryanton, Caron, Cupido, Flaherty, Fung and McCall, 2012) and therefore are critical to speech pathologists’ professional roles. A conundrum for clinicians can be that some policies, while legally sound, are ethically problematic. In Australia, the legal framework governing decision- making when patients no longer have capacity, such as when they may be close to the end of life, is impacted by different state, territory and federal laws. This can lead to drastically different outcomes for patients depending on the jurisdiction in which they live. Terminology also differs from state to state 1 . Substitute decision-makers and advance care directives are used only when patients no longer have capacity to make their own informed decisions. Substitute decision-makers may include immediate family members, carers or guardians. Formal substitute decision-makers, nominated and legally endorsed by the patient, may be

called enduring power of attorney (medical treatment), enduring power of attorney for personal and health matters, medical agent or medical power of attorney. Patients can write down their wishes in a document that is called an advance care directive (ACD). If a patient has an ACD, and it relates to the current decision, then it is considered legally binding. Substitute decision-makers are obliged to adhere to the ACD as they are obligated to make decisions they believe the patient would have made. While ACDs usually record decisions about refusing life-sustaining treatments, they are not limited to end-of-life decisions and can be used to support patient choices in their medical care. This “ethical” conversation presents a case whose significant issues are around choices in eating and drinking. Organisations are obliged to translate legal frameworks into the development of appropriate policies at an organisational level to deal with the needs of all stakeholder groups, respect the values and culture of the organisation and the individual patients who come in contact with it. Institutional policies developed to support/manage patients’ options around safe eating and drinking, if patients are at risk of choking (given choking can lead to multiple medical problems and even death), must cover patients who have decision-making capacity, an informal or formal substitute decision-maker and/or an advance care directive in place. It is important that staff and family are aware of the role and responsibilities, and the legalities around substitute decision-making and ACDs including the right to refuse medical treatments. Generally if an ACD exists it should be used as the basis for the decision. Speech pathologists bring a unique contribution and perspective to interdisciplinary decision-making affecting clients with communication and swallowing disorders. A speech pathologist, in their role as a manager or as clinical lead in a policy working party, can use the principles outlined in the SPA Code of Ethics as a useful reference for reflecting on potential benefits and harms for patients, the impact policy may have on autonomy and informed choices for patients, issues of fairness and access to care, and finally the impact any policy may have on the professional integrity of individual clinicians and the profession as a whole. The Speech Pathology Australia Code of Ethics may be a useful reference when working with colleagues to ensure a shared understanding of the ethical issues being discussed. In this discussion we will use a hypothetical case example to illustrate the use of a process to assist ethical

KEYWORDS CHOKE RISK DYSPHAGIA

ETHICS POLICY DEVELOPMENT POLICY IMPLEMENTATION

Helen Smith (top) and Christina Wilson

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JCPSLP Volume 17, Supplement 1, 2015 – Ethical practice in speech pathology

Journal of Clinical Practice in Speech-Language Pathology