JCPSLP Vol 21 No 3 2019

Multimodal communication

A retrospective cohort study of complex feeding decisions Informing dysphagia decision-making through patient experiences Maria Schwarz, Anne Coccetti, Elizabeth Cardell ,Tanya Hirst, and Lucy Lyons

Complex decision-making when dealing with situations such as feeding in the context of dementia, palliative care, and severe dysphagia is a complex clinical area for speech language pathologists (SLPs). The objective of this study was to provide an exploratory overview of complex feeding decisions, in order to highlight areas for improvement in clinical practice. A retrospective clinical chart audit of 82 participants was conducted within two hospital settings between 2012 and 2017 using an explorative approach. Complex feeding decisions were documented as “risk feeding” in 59.8% of instances and were most commonly made by the patient/family in consultation with the medical team (23.2%). Many of the complex feeding decisions were made without a multidisciplinary case conference (82.9%), without appropriate discussions with families regarding feeding decisions/options/alternatives (63.4%), and without relevant patient and family education (59.8%). Feeding decisions are ethically and clinically complex and therefore require a interdisciplinary and person-centred approach to discussion and education, as well as clear unbiased documentation. D ysphagia is common in the hospital setting, particularly in patients with multiple comorbidities, neurodegenerative disorders and cognitive disorders (Gogarty et al., 2013; Leder, Suiter, Agogo, & Cooney, 2016; Miller, 2013; Miller & Patterson, 2014; Serra-Prat et al., 2012) and patients with life limiting conditions (Gogarty et al., 2013). Complexity in dysphagia decision- making arises when the severity of the dysphagia requires the patient to be “nil by mouth” due to aspiration risk (Logemann, 1998; Miles, Watt, Wong, McHutchison, & Friary, 2016), when modifying diet and/or fluids effects quality of life in a palliative context (Aspray, Yarnall, Croxson, Chillala, & Sinclair, 2009; McCann, Hall, & Groth-Juncker, 1994; Nazarko, 2017; Palecek et al., 2010; Sherman, 2003), when decisions regarding enteral feeding are

required or when a competent individual chooses to forgo the recommendations made by the speech language pathologist (SLP) and/or the multidisciplinary team. Within the acute hospital setting particularly, a balanced approach considering both medico-legal and contextual requirements, as well as the patient’s individual preferences, and a focus on patient-centred decision-making must be maintained. These complex clinical decisions require an interdisciplinary approach to management, with a strong focus on communication between staff and patients/carers (Miles et al., 2016). In instances of severe dysphagia, recent evidence from the dementia literature promotes the decision to forgo enteral nutrition and artificial hydration, which is reported to be both acceptable and in line with scientific evidence (Schwartz, Ditucci, Goldman, Gramigna, & Cummings, 2014). Similarly, in the palliative setting growing evidence suggests that in the context of a life limiting illness a focus on assisted oral feeding for comfort and enjoyment is encouraged in the literature (Gogarty et al., 2013; Lembeck, Pameijer, & Westcott, 2016; Mathew, Davies, Manthorpe, & Iliffe, 2016; McCann et al., 1994; Mitchell, Kiely, & Lipsitz, 1997; Vitale, Berkman, Monteleoni, & Ahronheim, 2011). Despite growing evidence promoting a more patient- centred, rather than risk-mitigation approach, staff report inadequate training and lack of organisational policy as key barriers to prompt and appropriate management of complex feeding decisions (McHutchison, Miles, Spriggs, & Jayathissa, 2018; Miles et al., 2016). While awareness of complex feeding decisions is growing in the literature, particularly in the area of dementia, little is known about current practices in this field. A limited understanding of current practice may reduce staff confidence. Staff, for instance, report feeling that they lack the support of prior learning and policy to direct them in their decision-making with regards to complex feeding decisions (Miles et al., 2016). Similarly, evidence gaps relating to an understanding of current practice in complex feeding decisions limits the ability to improve service delivery as clinical gaps are not identified and understood. Thus, this discussion paper aims to provide an exploratory overview of current practices in complex feeding decisions, in order to highlight areas for improvement. Particular consideration has been given to current practices regarding consistency of documentation, interdisciplinary engagement, and patient/carer education, in order to highlight opportunities for improved health team education, policy development and patient and family involvement.

THIS ARTICLE HAS BEEN PEER- REVIEWED KEYWORDS DYSPHAGIA PATIENT-CENTRED SHARED DECISION-MAKING

Maria Schwarz (top), Anne Coccetti (centre) and Elizabeth Cardell

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JCPSLP Volume 21, Number 3 2019

Journal of Clinical Practice in Speech-Language Pathology