JCPSLP Vol 20 No 3 November 2018

Katherine encapsulated their approach by stating: “We want a holistic understanding and ways to manage those sensitive conversations in real time with relatives and caregivers” to which Robyn agreed. What intervention plan do you recommend/suggest? Robyn and Katherine engaged in a risk/benefit approach to clinical reasoning. Katherine recommended “an objective assessment to identify actual risks, benefits of comfort feeding or other strategies. There is a whole toolkit to minimise risks, including compensatory strategies, food and fluid modifications, nutritionally appropriate strategies.” Similarly, Robyn acknowledged there were options to manage risks: There’s a risk of aspiration but it doesn’t say ‘choking’ risk. So, if he was to have comfort feeding, he may be able to manage his symptoms of thirst and hunger to some extent. In talking about risks, how much more tone or weight can he lose? Their flexible approach to considering intervention was reflected by Katherine’s example: “We need to consider risks and comfort, minimising risks, facilitating comfort so some of both. For example, there may be a family birthday and he decides ‘I’m not going to have thick fluids’.” Katherine and Robyn emphasised a need to be “overt” about options and their implications: “Keeping foremost how the person feels and what they want to do; plan it together. It’s about an intentional collaboration creating a coherent plan with the person, family and team members and medical team”. Katherine expressed frustration with some speech-language pathologists who can be directive: “[They say] you should do this or… It’s not that black and white, more shades of grey. I conceptualise it as a continuum that you can move back and forward along.” Robyn agreed there needed to be a family discussion about the implications of the various options. Her concerns were for “how Donal feels if Padraig dies sooner rather than later? And how might Donal feel if Padraig deteriorates significantly and lingers, suffering?” Robyn raised her concern that: Donal is going to be upset either way; is one outcome more distressing? We need to consider the burden of decision-making for Donal and the weight of expectations on him. This needs to be a whole family discussion rather than Padraig guessing what Donal may or may not feel. Robyn also identified that it might be valuable for the social worker to be involved in the end of life discussions and to address financial factors, including wills and insurance. When the “elephant in the room” was raised by Helen, that is: “Would you use a feeding tube?”, both clinicians considered it a real option. Katherine responded, “I would never say ‘no, never’. It may be medically appropriate and acceptable to the family and minimise risks for some people”. Robyn reflected, radiologically inserted gastrostomy (another form of long-term feeding tube placement). This may not be an either/or decision but both if he is enjoying food as well. I suppose the basic options are any of the following, possibly in combination: comfort feeding, oral nutrition support and/or enteral feeding. I want to I will consider enteral feeding but also explore the consequences of not choosing a PEG or a

Furthermore, Katherine reflected that the Speech Pathology Australia Code of Ethics (Speech Pathology Australia, 2010) and Ethics Education Package (Speech Pathology Australia, 2014) were important resources to support speech pathologists to make ethical decisions. She argued that effective decision-making at end of life, requires the health care team to translate “esoteric concepts” into the “real world” of clients. She observed that there was a need to develop a framework specific to the experience of working in palliative dysphagia. Members of the Speech Pathology Australia Ethics Board, including co-authors Helen and Belinda, would encourage members to consider using ethical decision- making frameworks to guide ethical reflection (Speech Pathology Australia, 2015). To support ethical practice in this scenario, a “principles based approach” is recommended to facilitate reflection on autonomy, benefit and harm during Padraig’s care. For example, careful consideration is required of the nature of potential benefits associated with Padraig’s health care choices as well as potential risks. An Ethics of Care approach may also support SLPs to explore Padraig’s specific health care context and relationships. What process/es and people would you include during decision-making in this scenario? Both clinicians would “talk with Padraig” before any broader decision-making discussion. For Katherine, this interaction would identify if “there is someone else useful, someone the client wants” to participate in decision-making. For Robyn, it was important “to find out where he’s at before I did anything else. Explore his own understanding of what he’s been told and also what’s the next step for him, the family and others.” Robyn discussed taking a systems approach to decision-making; an approach mirrored by Katherine. Both suggested that such an approach should include: • Padraig and relevant members of his family; • Medical and clinical treatment teams: “Possibly the surgeon, to understand why they weren’t able to manage it surgically, assuming that conversation had not already happened.” Also, the managing doctor “Because we need someone who can give the medical prognosis, trajectory to death, and likely scenarios around the dying process.” Katherine perceived that that dietitians and SLPs had an important role in advocating for clients with general practitioners and the co-ordinator of care. She also stated that often in situations concerning decision- making around nutrition and hydration options “dietitian and SLP work effectively together to jointly see clients and talk to the doctors together”. • Psychosocial team: social worker and clinical psychologist and possibly a chaplain (if spirituality was part of Padraig’s decision making), to navigate understanding, beliefs and feelings with regards to untreatable dysphagia. This team could also assist discussion of future plans and help with adjustment. Robyn explained: “Maybe it would be good for Donal (Padraig’s son) to participate in a family meeting because we want to give him an opportunity to talk about how he feels about dad’s wish to ‘hang on’ for his sake, so his dad can see him finish high school”. • Other team members, for example, an occupational therapist to help with equipment needs/discharge planning, amongst other things.

171

JCPSLP Volume 20, Number 3 2018

www.speechpathologyaustralia.org.au