A realist review of advance care planning for people with multiple sclerosis and their families

Abstract

Background Advance care planning (ACP) is reported to improve the quality of outcomes of care among those with life-limiting conditions. However, uptake is low among people living with multiple sclerosis (MS) and little is known about why or how people with MS engage in this process of decision-making. Aims To develop and refine an initial theory on engagement in ACP for people with MS and to identify ways to improve its uptake for those who desire it. Methods Realist review following published protocol and reporting following Realist and Meta-narrative Evidence Synthesis: Evolving Standards (RAMESES) guidelines. A multidisciplinary team searched MEDLINE, PsychInfo, CINAHL, Scopus, Web of Science, Embase, Google Scholar in addition to other sources from inception to August 2019. Quantitative or qualitative studies, case reports, and opinion or discussion articles related to ACP and/or end of life discussions in the context of MS were included, as well as one article on physical disability and one on motor neuron disease, that contributed important contextual information. Researchers independently screened abstracts and extracted data from full-text articles. Using abductive and retroductive analysis, each article was examined for evidence to support or refute 'context, mechanism, and outcome' (CMO) hypotheses, using the Integrated Behaviour Model to guide theory development. Quality was assessed according to

Influence of individual, illness and environmental factors on place of death among people with neurodegenerative diseases: a retrospective, observational, comparative cohort study

“…This finding supports a recent realist review of the imperative for health professionals to engage with people with MS in the ACP process at the most opportune moment and that health professional be considered by the person with MS to have trusting and empathic qualities. 26 In addition, GPs were shown to subsequently take a role in coordinating future patient care together with their family and were instrumental in contributing to making it possible for that care to take place in a location of the patient's preference to prevent hospital deaths. This finding cannot be underestimated, particularly given that these instances of conversations and subsequent care were more frequent than among patients where ACP discussions were initiated by other HCPs.…”

“…Our findings compel any initiative aimed at enabling people with neurological illnesses who express a desire to remain at home to respond adequately to all factors we identify in this study and also consider the contribution of ACP and the conditions required to make it relevant and acceptable to those who might benefit from it. 26…”

“…[23][24][25] The potential benefits of ACP for people severely affected by neurological conditions and their families can include providing important opportunities for discussion of diagnosis and prognosis so care is aligned with their preferences, improving symptom discussions, treatment adherence and reduced misunderstandings and conflict between medical staff and families. 26 The UK Multiple Sclerosis and Parkinson's Disease Tissue Bank (UK MS PD TB) is a national collection of central nervous system tissue samples donated after death by individuals with MS, PD and related neuroinflammatory and neurodegenerative conditions. 27 The donor schemes are community based and for those with MS has been demonstrated to closely reflect the whole UK MS population.…”

Study protocol on advance care planning in multiple sclerosis (ConCure-SM): intervention construction and multicentre feasibility trial

“…22 A realist review identified two main barriers for ACP discussions taking place: the long and uncertain MS trajectory, with periods of stability punctuated by crisis; and lack of ACP communication skills and confidence of HPs. 23 ConCure-SM is a project aimed to set up and evaluate the efficacy of an ACP intervention for pwPMS in Italy. The Shared Decision Making model described earlier is the theoretical framework of the project.…”

“… 22 A realist review identified two main barriers for ACP discussions taking place: the long and uncertain MS trajectory, with periods of stability punctuated by crisis; and lack of ACP communication skills and confidence of HPs. 23 …”