JCPSLP Vol 20 No 3 November 2018

to be managed in situations where nutritional intake is increased quickly.” Katherine and Robyn considered dysphagia within medical and social contexts to help determine meaningful treatment options. Katherine noted that she would “need to think about the interaction between his dysphagia and the cancer. So, is it a primary condition or secondary to his radiotherapy?” Both professionals focused upon Padraig’s knowledge and beliefs. They wanted to understand “What is his understanding of his medical condition, his dysphagia?”, and “What are his beliefs and wants regarding enteral feeding? Does he even want to consider alternative feeding as an option? Has he considered the matter already and have an advance care directive that includes reference to enteral feeding?” Dysphagia management is based upon a model of holistic care so Padraig’s functional status was another important consideration: Is he able to mobilise? What’s his functional status and is he in bed all day? Is he in hospital and therefore is he a demand on the health service? Who’s able to care for him after discharge from hospital? And who is going to prepare his meals or potentially administer his enteral feeds? Such questions addressed Padraig’s future care needs and the potential implications for his health care team. Holistic care also included insights on family status. Robyn queried: “Is his wife going to be concerned about broader financial needs (including loss of an income), care for the family? The family may benefit from some social worker input to negotiate these issues.” Katherine summarised the importance of attending to background information when she stated, “Padraig is situated within a context, an extended network that includes his family and the team including the dietitian.” What decision-making frameworks, if any, might you use to assist your ethical reasoning in this case? Robyn reflected upon the Dietitian’s Association of Australia (DAA, 2018) Enteral Feeding Manual and considered this a useful resource for considering options regarding enteral feeding. The content of this resource would provide a good basis for education of Padraig and his family regarding enteral nutrition if they were considering or wanting to choose the NET/PEG option. Robyn also commented on a local health network resource about decision-making re PEG placement. She considers this helpful as it highlights the pros and cons of choosing both to progress and not to progress with the enteral feeding option, thereby assisting families to make an informed choice. This information could then be tailored to Padraig’s specific circumstances, with opportunity to respond to the options, ask questions and discuss as a family if appropriate. Katherine reported that she would follow the steps identified through a recently published narrative review of ethical and legal issues in speech pathology palliative dysphagia care (Kelly, Cumming, Kenny, Smith-Merry & Bogaardt, 2018). In keeping with the review findings, Katherine proposed three core decision-making elements: • Consideration of Padraig, considering his wants, needs and understanding; • What is happening clinically? and • What is acceptable and non-acceptable to Padraig’s family?

terms of autonomy and “how a person is supported to make good decisions”. She explained: “The decisions made may not be what we as clinicians think is best. How do we keep people well informed?” Robyn also acknowledged issues of autonomy: He’s dying but wants to live to see his son finish high school. I understand his perspective. I wonder what the doctors have communicated with Padraig about his anticipated length of life. Suitable oral nutrition support or enteral feeding may be an option depending on Padraig’s goals and prognosis, but the risks and implications of progressing with enteral feeding or oral nutrition support would also need to be considered. Robyn went onto discuss these risks and implications in detail: Enteral feeding tube placement does not guarantee improved quality or length of life. It can, however, help with hunger, hydration and medication provision. If an enteral feeding tube is placed and enteral feeding provided, risks such as aspiration, vomiting, tube dislodgment and diarrhoea need to be considered. Someone would need to administer the feed, or in the case of oral nutrition support, someone would need to provide this for Padraig. Robyn explained that, with oral nutrition support, there would be some benefits if Padraig enjoyed either nutritional supplement drinks or high energy high protein foods of a suitable texture. This may help ease his hunger and thirst. In some settings, the client pays for supplements or enteral feeds themselves. Robyn was concerned that the financial burden of treatment choices and the functional impact of physically providing the enteral feeding/ oral supplements/ modified diets may impact Padraig and his care needs. “There are times,” Robyn concluded, “when oral or enteral nutrition support, are not appropriate – it all depends on the person and their approach to life and treatment. There are many issues to consider in decision making about oral and/ or enteral intake.” Is there additional key information you would want to assist your decision- making? Both Robyn and Katherine requested additional clinical and background contextual information to support their decision-making for Padraig. Clinical information was integral to managing this case. Katherine and Robyn asked about the type and nature of Padraig’s cancer, his clinical condition, impact of his current treatment, and his response and progress. Other medical history, including diabetes and renal function, other comorbidities, and medications were important factors as well as functional issues, including dentition: “does he have teeth?” Other symptoms Padraig is experiencing are also important to consider (e.g., pain), as well as medications used to manage these symptoms. An additional background question was: “Has he had any previous enteral access and naso-gastric tube (NGT) or percutaneous endoscopic gastrostomy (PEG) during his radiotherapy?” Not surprisingly, Padraig’s nutritional status was a key concern for both health professionals. Their reasoning included queries such as: “How much is he currently eating?” Robyn added: “What micronutrients is he missing and how is this impacting on his health?”, and “Is enteral feeding even an option? Refeeding syndrome would need

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JCPSLP Volume 20, Number 3 2018

Journal of Clinical Practice in Speech-Language Pathology