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Exploring pathways to optimise care in malignant bowel obstruction (EPOC): Protocol for a three-phase critical realist approach to theory-led intervention development for shared decision-making [1]

['Alison Bravington', 'Wolfson Palliative Care Research Centre', 'Hull York Medical School', 'University Of Hull', 'Hull', 'United Kingdom', 'Jason W. Boland', 'Sarah Greenley', 'Michael Lind', 'Fliss E.M. Murtagh']

Date: 2024-02

Exploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition.

Malignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients’ distress and uncertainty. Little attention has been paid to the implicit influences on this process–for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making.

Funding: Funding statement In 2021, the registered charity Yorkshire Cancer Research awarded funding for this study to Principal Investigator Alison Bravington at the University of Hull after external peer review. Award reference number: HEND405AB. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Fliss Murtagh is a National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the NIHR, or the Department of Health and Social Care.

Copyright: © 2024 Bravington et al. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Introduction

Malignant bowel obstruction–a blockage of the intestines by cancer–can present at diagnosis, or at any time during the cancer journey. It may be due to operable localised cancer, or inoperable invasive or disseminated cancer. Overall, around 15 per cent of all cancer patients are affected [1], but bowel obstruction is most common in ovarian cancer (about half of all patients) and colorectal cancer (just over a quarter) [2, 3]. Bowel obstruction has a major impact on patients and their families: symptoms include severe nausea and/or abdominal pain and vomiting (which may be persistent, large-volume and/or faeculent), and are distressing to experience and to witness [4]. While some local NHS Trusts have produced guidelines for management of the condition, these emerge from clinical experience rather than a broad evidence-base including patient perspectives. There are variations in clinical practice between units, and attention to quality of life is lacking [5].

Working out the best way to treat malignant bowel obstruction is challenging. Patient journeys are variable [6], and can involve intense periods of episodic care across trajectories of obstruction, resolution, and recurrence. Management can include surgery, stenting (sometimes as a bridge to surgery), corticosteroids, somatostatin analogues, and total parenteral nutrition. Systematic reviews report substantive ongoing uncertainties regarding management [7–11]. Curative surgery may sometimes be possible, and palliative surgery may improve survival for some [12]; in others, surgery may be ineffective, unsafe, or inconsistent with broader goals of care [13, 14]. A Cochrane Clinical Answer in 2018, drawing on Cousins et al’s 2016 review [7], stated that “no conclusions as to the benefits or harms of surgery for malignant bowel obstruction due to gynaecological or gastrointestinal cancer can be drawn” [15].

The need for a better evidence-base to support clinical decision-making is undisputed [16], but there is another serious deficiency in the clinical care of patients with malignant bowel obstruction. Recent research demonstrates that inconsistent communication between practitioners and patients can create and amplify distress and uncertainty–patients and their families often receive conflicting information and advice, sometimes during the same episode of care [17, 18]. Patients with malignant bowel obstruction and their caregivers have highlighted that information about treatment and possible pathways of care should be better tailored to their needs, and the patient voice better represented. These issues need to be sensitively and comprehensively addressed to ensure that face-to-face communication is consistent with the NIHR’s service delivery recommendations [19], and to ensure optimal treatment decision-making that maximises survival and quality of life.

In the past two decades, shared decision-making (SDM) between clinicians and patients has become a cornerstone of person-centred care [20, 21]. SDM is most often defined as ’the process of integrating both the best available evidence and patients’ values and preferences in the decision-making process’ [22]. SDM in practice is more complex, involving the communication of possible treatment options and the potential outcomes, probabilities and uncertainties by the clinician, and the processing of this information by the patient–followed by the weighing of the benefits and harms of treatment against the patient’s values and social context [23]. However, multidisciplinary, collaborative care is more complex than the dyadic communication typically characterised by SDM, making it necessary to consider roles and relationships (between practitioners, and between practitioners, patients and their families [24]) and how they influence decision-making.

Malignant bowel obstruction is an example of a complex health condition. Its mode of presentation, pace of progression, and the range of disciplinary collaboration required can make management of the condition challenging, and decision-making in true partnership with patients and their families may not be possible at every point in its trajectory [23]. Where decisions about emergency symptom control, the benefits of surgery, the likelihood of recurrence and/or end of life care combine, SDM becomes highly complex. Given that patient perspectives on decision-making in palliative care in particular are under-researched [22, 25], there is currently little evidence to help conceptualise how decision-making partnerships between multidisciplinary teams and people with malignant bowel obstruction work, from the first occurrence of an obstruction to end of life care.

Attempts to conceptualise SDM suggest a range of underlying social influences, such as clinicians’ perceptions of patients’ capacity [26], patient and practitioner values and motivations [27], and patients’ perceptions of their own validity as decision-makers [25]. These implicit beliefs and behaviours reflect the ‘active ingredients’ of health care practice that are critical to the success of complex interventions [28]. In the language of realist synthesis [29, 30], they are ‘mechanisms’ [31], affected by a range of contextual issues such as practitioner-patient relationships, quality of information provision, continuity of care, and cultural sensitivity [23]. How these mechanisms work in relation to complex health conditions can only be explored by moving from the general (theoretical conceptions of how mechanisms produce outcomes in a social process such as decision-making) to the particular (how these theoretical causal pathways operate in specific contexts).

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[1] Url: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0294218

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