Advance care planning in progressive neurological conditions

Kent, Anna

doi:10.7748/ns.29.21.51.e9192

Cited by 6 publications

(10 citation statements)

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“…Of the 33 articles, 17 focused on MS exclusively [ 20 , 42 – 57 ] seven on MS in combination with chronic neurologic or non-neurologic illness [ 17 , 58 – 63 ]; one on MND [ 64 ] seven on neurological illness (non-specified) [ 18 , 19 , 65 – 69 ], and one on disability [ 70 ]. Nineteen were qualitative or quantitative studies [ 20 , 42 – 44 , 46 , 47 , 49 , 50 , 54 – 56 , 59 , 61 – 64 , 67 , 68 , 70 ]; one was a mixed methods study [ 19 ]; and 13 were case studies, literature reviews or discussion/opinion articles [ 17 , 18 , 45 , 48 , 51 – 53 , 57 , 58 , 60 , 65 , 66 , 69 ] of which seven were opinion or expert panel-based articles [ 17 , 18 , 48 , 51 , 53 , 58 , 66 ] three were case-studies [ 45 , 57 , 65 ] and three were lite...…”

Section: Resultsmentioning

confidence: 99%

“…The source articles reflect an international scope; two had an international authorship [ 51 , 60 ], seven from USA [ 43 , 44 , 46 , 48 , 66 , 68 , 70 ], seven from UK [ 17 , 18 , 52 , 56 – 58 , 65 ] seven from Canada [ 20 , 49 , 50 , 55 , 59 , 62 , 67 ], four from Germany [ 16 , 47 , 54 , 63 ], two from the Netherlands [ 61 , 69 ], one from Australia [ 64 ], Italy [ 53 ], Peru [ 19 ] and Turkey [ 45 ].…”

Section: Resultsmentioning

confidence: 99%

“…Ten studies supported this CMO hypothesis [17,18,48,56,57,61,65,67,70,72], which is the basis underpinning the original development of concept of ACP. Kalb explained: "people living with MS struggle to maintain a feeling of control in the face of an unpredictable disease course and uncertain future.…”

Section: Cmo 4: Acp As a Tool For Enabling Control And Autonomy In Dementioning

confidence: 87%

“…Confidence and communication skills were important mechanisms to facilitate ACP completion, reported in 16 source articles [ 18 , 19 , 42 , 44 , 45 , 50 , 51 , 55 , 58 , 59 , 60 , 64 , 67 – 70 ]. Strong evidence supported an inverse relationship between poor communication skills and the absence of ACP discussions.…”

Section: Substantially Supported Cmo Hypothesesmentioning

confidence: 99%

“…Reasons for this are complex; for example, van Vliet et al suggest that the nature of the relationship between people with MS and neurologists may be important, as well as the association between palliative care and end of life, which speaks to the uncertainty inherent in MS. This clinical uncertainty is due to the unpredictable trajectory of MS, which includes periods of stability punctuated by crisis, and makes it challenging to identify people with MS who are approaching a point where mental capacity is compromised and/or where life may be limited [16][17][18][19][20]. Moreover, health professionals often fail to initiate these discussions, possibly due to their reluctance to discuss disease progression and death and their difficulty managing their own emotions during difficult conversations [21,22].…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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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

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Cmo 4: Acp As a Tool For Enabling Control And Autonomy In Dementioning

confidence: 87%

Section: Substantially Supported Cmo Hypothesesmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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Family Physicians’ Relationship with Older Patients Between Palliative Care and Advance Care Planning Management

Testoni

Cernesi²,

Davolio³

et al. 2022

Practical Issues in Geriatrics

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“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

Koffman

Penfold

Farsides

et al. 2022

Preprint

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Background Little is known about how people with multiple sclerosis and their families comprehend advance care planning (ACP) and its relevance in their lives. Aim To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP Methods We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach. Results Participants’ narratives focused on three major themes:(i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate discussions. Some shared concerns of a lack of confidence when having ACP discussions. Conclusion These findings support the need for a whole systems strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.

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Advance care planning in progressive neurological conditions

Cited by 6 publications

References 0 publications

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

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

Family Physicians’ Relationship with Older Patients Between Palliative Care and Advance Care Planning Management

“I wanna live and not think about the future” What place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study

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