Choosing the place of death: Empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making

Chhetri, Suresh Kumar; Bradley, Belinda Fay; Callagher, Pauline; Addison-Jones, Robert; Bennett, Wendy L; Gardham, J. R. C.; Parkes, Amy; Lea, Robert; Majeed, Tahir

doi:10.1177/0269216315570412

Cited by 12 publications

(8 citation statements)

References 4 publications

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“…In quantitative studies from the United States and Canada, the finalization of ADs is reported between 70% and 90%, as Murray and Butow 36 reveal in their review. A rate of 52.2% is reported for preferred priorities of care documents used for ACP documentation in a UK study 124 and five out of eight patients completed an advance decision to refuse treatment in another UK study. 111 According to Stutzki et al , 30 the proportion of study participants who had written an AD in Germany and Switzerland increased from the baseline (49%) to follow-up (82%), 30 possibly because an AD is more likely to be written in later stages of the disease or because of a raised awareness triggered by study participation.…”

Section: Resultsmentioning

confidence: 99%

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

et al. 2022

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Amyotrophic lateral sclerosis (ALS) leads to death on average 2–4 years after the onset of symptoms. Although many people with the disease decide in favour of life-sustaining measures, some consider hastening death. The objectives of this review are to provide an insight into the following questions: (1) How do people with amyotrophic lateral sclerosis (PALS), their families and health care professionals (HCPs) communicate about life-sustaining and life-shortening options? (2) What are the challenges for all involved in decision making and communication about this topic? To answer these questions, we searched eight databases for publications in English and German on end-of-life issues of PALS. We included texts published between 2008 and 2018, and updated our search to May 2020. Sources were analysed in MAXQDA using deductively and inductively generated codes. After the final analysis, 123 full texts were included in this review. We identified a wide range of communicative challenges and six different and, in part, opposite communication patterns: avoiding or delaying communication on end-of-life issues, openly considering dying and actively seeking assistance, ignoring or disregarding patients’ wishes, discussing and respecting the patients’ wishes, engaging in advance care planning and avoiding or delaying advance care planning. The literature reveals a very heterogeneous response to end-of-life issues in ALS, despite several good-practice suggestions, examples and guidelines. We derive a strong need for harmonization and quality assurance concerning communication with PALS. Avoiding or delaying communication, decision making and planning, as well as ignoring or disregarding the patient’s will by HCP can be judged as a violation of the ethical principles of autonomy and non-maleficence.

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Section: Resultsmentioning

confidence: 99%

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

et al. 2022

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“…Thematic analysis, however, draws attention to three aspects of communication: processes, style, and the content of communicated information. Findings indicated a primary need for improved communication processes, for example, discussion of end-of-life issues both early and incrementally throughout the disease trajectory ( 52 , 121 ). Providing substantive information that meets the needs of patients and families was equally important to communication style in the recommendations.…”

Section: Discussionmentioning

confidence: 99%

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

et al. 2021

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Background: Communication about end of life, including advance care planning, life-sustaining therapies, palliative care, and end-of-life options, is critical for the clinical management of amyotrophic lateral sclerosis patients. The empirical evidence base for this communication has not been systematically examined.Objective: To support evidence-based communication guidance by (1) analyzing the scope and nature of research on health communication about end of life for amyotrophic lateral sclerosis; and (2) summarizing resultant recommendations.Methods: A scoping review of empirical literature was conducted following recommended practices. Fifteen health-related and three legal databases were searched; 296 articles were screened for inclusion/exclusion criteria; and quantitative data extraction and analysis was conducted on 211 articles with qualitative analysis on a subset of 110 articles that focused primarily on health communication. Analyses summarized article characteristics, themes, and recommendations.Results: Analysis indicated a multidisciplinary but limited evidence base. Most reviewed articles addressed end-of-life communication as a peripheral focus of investigation. Generic communication skills are important; however, substantive and sufficient disease-related information, including symptom management and assistive devices, is critical to discussions about end of life. Few articles discussed communication about specific end-of-life options. Communication recommendations in analyzed articles draw attention to communication processes, style and content but lack the systematized guidance needed for clinical practice.Conclusions: This review of primary research articles highlights the limited evidence-base and consequent need for systematic, empirical investigation to inform effective communication about end of life for those with amyotrophic lateral sclerosis. This will provide a foundation for actionable, evidence-based communication guidelines about end of life. Implications for research, policy, and practice are discussed.

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“…ventilation) and end-of-life care interventions (e.g. DNR, preferred place of death) (32)(33)(34)(35). A retrospective study at a specialised ALS clinic found that the majority of patients had preferred to die at home with the support of family (32).…”

Section: Advance Care Planningmentioning

confidence: 99%

“…DNR, preferred place of death) (32)(33)(34)(35). A retrospective study at a specialised ALS clinic found that the majority of patients had preferred to die at home with the support of family (32). Interviews with ALS patients and family caregivers in the same region about their experiences of palliative care revealed that patients and their family caregivers invariably sought discussions about advance care planning (33).…”

Section: Advance Care Planningmentioning

confidence: 99%

Decision-making among patients and their family in ALS care: a review

Foley

Hynes

2017

Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

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Greater attention to family member roles beyond the primary caregiver role is needed. Strategies that integrate cognitively-impaired patients into the family decision-making process require investigation. Identification of the domains in which ALS patients and their family members support one another in the decision-making process could facilitate the development of patient/family decision-making tools in ALS care.

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Choosing the place of death: Empowering motor neurone disease/amyotrophic lateral sclerosis patients in end-of-life care decision making

Cited by 12 publications

References 4 publications

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

Talking about the end of life: communication patterns in amyotrophic lateral sclerosis – a scoping review

Communication About End of Life for Patients Living With Amyotrophic Lateral Sclerosis: A Scoping Review of the Empirical Evidence

Decision-making among patients and their family in ALS care: a review

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