Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

Murray, Leigh; Butow, Phyllis; White, Kathryn; Kiernan, Matthew C.; D’Abrew, Natalie; Herz, Helen

doi:10.1177/0269216315613902

Cited by 44 publications

(87 citation statements)

References 17 publications

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“…In fact, beyond the request for pain relief, this review found scarce insight into what medical options residents and family members considered important to include in ACP, and wide variability was found regarding the “right time” for ACP. These findings confirm the need for further studies and guidance regarding the timing and style of introducing ACP to patients and their families,38 with the consideration that choosing the right moment and appropriate wording to engage patients in ACP may have a profound impact on the value and effects of ACP 4…”

Section: Discussionsupporting

confidence: 61%

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Mignani

Ingravallo

Mariani

et al. 2017

CIA

115

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ObjectiveWe aimed to search and synthesize qualitative studies exploring the perspectives of older people living in long-term care facilities and of their family members about advance care planning (ACP) discussions.MethodsThe enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework was used to guide the review and report its results. PubMed, CINAHL, and PsycINFO were searched for studies published between January 2000 and November 2015. All included studies were assessed for comprehensiveness of reporting, and a thematic synthesis of their results was performed.ResultsThe nine included studies differed in terms of qualitative method used, comprehensiveness of reporting, and geographical origin. The thematic synthesis led to the identification of four main themes: 1) plans already made; 2) end-of-life care and decision-making; 3) opinions and attitudes toward ACP; and 4) how, when, about what, and with whom to do ACP.ConclusionDespite their willingness to be involved in a shared decision-making process, older residents and their families still have little experience with ACP.Practical implicationsIn view of implementing ACP for elders living in long-term care facilities, it would be important to rethink ACP and also to incorporate their nonmedical preferences, according to their own priorities.

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Section: Discussionsupporting

confidence: 61%

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Mignani

Ingravallo

Mariani

et al. 2017

CIA

115

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“…Timeliness of decision making is frequently raised in the broader MND literature. A discord is evident between people with MND and health care professionals or between people with MND and their family carers, with health care professionals and family carers often advocating for early or pre‐emptive decisions whilst people with MND, either because of denial or wishing of focus on the present, choosing to postpone decisions . The importance of early decision making is often justified due to the inevitable deterioration in speech function and possible development of cognitive deficits .…”

Section: Discussionmentioning

confidence: 99%

“…A discord is evident between people with MND and health care professionals or between people with MND and their family carers, with health care professionals and family carers often advocating for early or pre-emptive decisions whilst people with MND, either because of denial or wishing of focus on the present, choosing to postpone decisions. 10,36,46 The importance of early decision making is often justified due to the inevitable deterioration in speech function and possible development of cognitive deficits. 20,29 Early discussions with patients and carers are recommended in international clinical guidelines for MND, in order to establish advance care plans or because timing is crucial to some intervention decisions, such as gastrostomy, which has a defined window of opportunity.…”

Section: Amyotrophic Lateral Sclerosis and Assisted Ventilationmentioning

confidence: 99%

Communication and cognitive impairments and health care decision making in MND: A narrative review

Paynter

Cruice

Mathers

et al. 2019

Evaluation Clinical Practice

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Rationale Motor neurone disease (MND) is a neurodegenerative disease presenting with progressive weakness of voluntary muscles. For any condition, person‐centred health care relies on the sharing of information and a mutual understanding of the person's needs and preferences. Decision making in MND becomes more complex as there is no cure and a high prevalence of co‐morbid communication and/or cognitive difficulties. Objective To identify the reported impact of communication and/or cognitive impairment on patient and carer involvement in health care decision making in MND. Methods A review and synthesis of studies addressing issues of communication impairment and/or cognitive impairment in relation to decision making focussed on MND was conducted. Articles were excluded if they were reviews, case studies, conference papers, or commentaries. To be included studies needed to address issues of communication impairment or cognitive impairment specifically in relation to decision making. Relevant data were extracted verbatim and subjected to content analysis to support the narrative summary. Results Seventy‐six articles were identified, and 35 articles screened. Six articles met inclusion criteria each describing examples of decision making in MND. There was limited data related to communication and/or cognitive impairment, and the impact these impairments may have on decision making despite recognition that many people with MND may lose verbal communication or develop subtle cognitive impairments. The literature is primarily from the perspective of others. Conclusion This review highlights that the current body of literature exploring decision making within the MND population presents us with extremely limited insights into the impact of communication and/or cognitive impairments on health care decision making. Extant literature focuses on interventions (namely, ventilation and gastrostomy), the broad process of decision making, or cognitive assessment of decision‐making ability. Whilst most studies acknowledge that deficits in communication or cognition impact the decision‐making process, this issue is not the focus of any study.

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“…Although the end‐of‐life phase remains poorly defined and timing of palliative care input is not consistent globally, 22 advance care planning assists patients and their families with important decision making, imparting control and composure in a situation in which they may otherwise be absent. Carers have identified disease‐specific advanced directives (such as patient letters of future care) as useful tools to stimulate such discussion while maintaining respect for patient autonomy 23 . Appropriate timing for these discussions is often individually based, but can be sensitively approached when introducing intervention options such as non‐invasive positive pressure ventilation or gastrostomy.…”

Section: Advances In Treatment Approach: New Standards Of Carementioning

confidence: 99%

Motor neurone disease: progress and challenges

Dharmadasa

Henderson

Talman

et al. 2017

Medical Journal of Australia

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Major progress has been made over the past decade in the understanding of motor neurone disease (MND), changing the landscape of this complex disease. Through identifying positive prognostic factors, new evidence-based standards of care have been established that improve patient survival, reduce burden of disease for patients and their carers, and enhance quality of life. These factors include early management of respiratory dysfunction with non-invasive ventilation, maintenance of weight and nutritional status, as well as instigation of a multidisciplinary team including neurologists, general practitioners and allied health professionals. Advances in technology have enhanced our understanding of the genetic architecture of MND considerably, with implications for patients, their families and clinicians. Recognition of extra-motor involvement, particularly cognitive dysfunction, has identified a spectrum of disease from MND through to frontotemporal dementia. Although riluzole remains the only disease-modifying medication available in clinical practice in Australia, several new therapies are undergoing clinical trials nationally and globally, representing a shift in treatment paradigms. Successful translation of this clinical research through growth in community funding, awareness and national MND research organisations has laid the foundation for closing the research-practice gap on this debilitating disease. In this review, we highlight these recent developments, which have transformed treatment, augmented novel therapeutic platforms, and established a nexus between research and the MND community. This era of change is of significant relevance to both specialists and general practitioners who remain integral to the care of patients with MND.

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Advance care planning in motor neuron disease: A qualitative study of caregiver perspectives

Cited by 44 publications

References 17 publications

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Communication and cognitive impairments and health care decision making in MND: A narrative review

Motor neurone disease: progress and challenges

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