Introduction of a palliative approach in the care trajectory among people living with advanced MS: perceptions of home-based health professionals

Abstract

Health professionals reported that they feel a palliative care approach for people living with MS is mandatory; however, they do not feel comfortable integrating it systematically into their care.

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

“…Seven studies corroborated this CMO [20,43,47,49,56,65,71]. ACP was reported to mitigate the fear of experiencing a distressing or 'bad' death [43,65] and may be a motivating factor for some people with MS. For example, in Chen and Habermann's study, participants shared views that having witnessed a 'bad death' or having experienced a life-threatening illness in a relative acted as a "close call" (p.4) that triggered their own fear of dying and the need to address it through engaging in ACP.…”

“…Building trust centred on active and reflective listening and validating patient's concerns and fears are foundational to engagement in ACP. Evidence from 10 studies substantiated this CMO hypothesis [20,42,44,49,50,52,55,59,63,70]. A relationship grounded on trust and empathy was essential when engaging in ACP discussions.…”

“…Despite this, two articles recommended initiating discussions about ACP as early as possible, even at the point of diagnosis [60,65], citing as justification future impaired communication or cognitive abilities. However, the most common recommendation to initiate discussions was after people with MS experienced key triggers indicating clinically significant disease progression [20,49,53,57,58]. Lowden suggests the rationale for this is that: "Participants felt ill-equipped to make treatment decisions early in the disease trajectory (p.e19).…”

“…Similarly, Leclerc-Loiselle and Legault described timing in the context of loss and acceptance: "Professionals all considered the adaptation period of people with MS to their new functional reality following an MS crisis was a pivotal moment to introduce a palliative approach. The moment right after an MS exacerbation was a turning point because there has usually been a reflexive process as a result of grieving the loss of previous functional abilities" [49] (p.267). This reflexive process of acceptance represents the mechanism that underpins potential optimal timing of ACP engagement in discussions in people with MS.…”

“…The fear of discussing death and dying was present in four articles [20,47,65,70] and may be considered to be wide-spread in post-modern Western culture [65,73]. Related to this, the reviewed literature identified that health professionals were reluctant to initiate ACP discussions because they feared discussions would lead to the loss of hope in the person with MS [19,20,49,64]. Correspondingly, some people with MS were reluctant to engage in ACP because they held out expectations of a cure for their MS [56].…”