As speech pathologists, we’ve had some pretty intense conversations with our patients. These have ranged from why it’s not appropriate to give your therapist lingerie as a gift to responding to a patient who had written: “I cannot talk. I cannot swallow. What life?” on a whiteboard after waking up in ICU after laryngectomy surgery.
Conversations that some may label “difficult” are commonplace for speech pathologists in health and care settings. Such conversations are typically started within the intimacy of an established and trusting relationship, and whilst certainly challenging, they are also pivotal to our role. Discussing communication options for a person who has a progressive neurological condition, assisting a person after a debilitating stroke to take a few tentative mouthfuls of thickened fluids, helping a person to decide whether to proceed with therapy in the absence of any meaningful gains – these typical scenarios require open conversations that enable the person to make their own choices, having understood the associated benefits and risks involved.
Speech pathologists intrinsically understand the need for a person to be heard, listened to and understood. But do we have a role in advance care planning (ACP)?
ACP is about understanding and respecting someone’s values and wishes. The aim of ACP is to help ensure people receive the care and treatment they would want in the future during serious and chronic illness at a time when they are unable to make or express their choices.  ACP is fundamental to person-centred care. Many people are willing and want to discuss their mortality and future but may not know how to bring this up with their family and health professionals. They may subtly begin with “I don’t want to be a burden to my family”. The health professional who feels uneasy or ill-equipped to deal with such a comment may fail to respond, and the person’s opportunity to relay their thoughts and wishes for the future is lost.
Speech pathologists are already engaging in ACP discussions. Discussions about disease progression, prognosis and options for future care, especially regarding swallowing and communication, is ACP. It isn’t an expectation that we sit down to write out an advance directive with a person, but we can easily direct them to resources and provide communication support to enable them to complete values-based and legal documents. Closing the loop by directing patients to ACP paperwork validates the work we are already doing; it’s not an additional task.
Health professionals including speech pathologists are educated to provide curative or rehabilitative care. It can be uncomfortable when people make decisions to decline treatment recommendations, such as commencing texture-modified intake or enteral feeding despite profound dysphagia, or medical options that may prolong but not improve quality of life, such as tracheostomy. The best way we can help people is to reserve our own value judgements and instead focus on truly understanding what is important to the person. Is duration or quality of life more important to them? What brings them enjoyment and pleasure? What are their goals? As speech pathologists, we are tasked with assisting people to effectively communicate their goals, even if they differ from our own. We are making progress with this. In the dysphagia sphere, Speech Pathology Australia has published the “Role of the Speech Pathologist in Supporting Informed Choices and Shared Decision Making in Dysphagia” position statement that discusses the roles and responsibilities of speech pathologists in guiding clinical care when a patient’s choices differ from the speech pathologist’s management plan for complex dysphagia.
Advance Care Planning Australia has a suite of online modules and resources to help clinicians understand the process of ACP, why it’s important, and how we can integrate patient choices into care planning. The website also contains information about formal documentation to meet requirements across all Australian states and territories. This is important as ACP legislation and requirements differ across jurisdictions.
CareSearch hosts information for allied health professionals on advance care planning. There is also a summary of the clinical evidence on this topic with links to PubMed searches for advance care planning and advance care directives, and information for patients, families and carers on advance care planning. For clinicians involved in the care of older people at or approaching the end of their life, palliAGED offers evidence and practical guidance on advance care planning.
If you agree with Alan Lakein: “Planning is bringing the future into the present so that you can do something about it now”, we challenge you to redefine “difficult” conversations as “meaningful” conversations. We urge you to recognise the input and discussions that you are already having as ACP and we encourage you to access formal ACP resources for your patients. You can take steps in assisting your patients to express their wishes by completing a module with your speech pathology colleagues or multidisciplinary team members, by asking your patients if they have an advance directive, and taking the time to understand what is important to them. As experts in communication, if we don’t advocate for our patient’s voices, who will?
- Sudore RL, Lum HD, You JJ, et al. Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel. Journal of Pain and Symptom Management. 2017;53(5):821-832.e821.
Wendy Pearse is an End of Life Care Project Officer with Sunshine Coast Hospital and Health Service, a member of Speech Pathology Australia's Aged Care Working Party, and an end-of-life-care researcher.
Stephanie Veal is a senior speech pathologist at Austin Health, recently seconded to work with the national program of Advance Care Planning Australia in a local roll out of a new model of care.