Communicating with palliative care patients nearing the end of life, their families and carers

Archer, Wendy; Latif, Asam; Faull, Christina

doi:10.1211/pj.2017.20202154

Cited by 3 publications

(3 citation statements)

References 13 publications

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“…Many of the communication challenges identified by this review are not unique to people living with ALS. For example, both this review and the palliative care literature identifies healthcare professionals' reluctance to address prognosis and end-of-life discussion avoidance (41, 115, 174, 175); difficulties identifying appropriate times for conversations about end of life (5, 115,164); and the changing needs of patients (163). ALS, however, presents additional communication challenges.…”

Section: Discussion Main Findings Of the Scoping Reviewmentioning

confidence: 99%

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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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Section: Discussion Main Findings Of the Scoping Reviewmentioning

confidence: 99%

“…The integral role of communication for end-of-life care is documented in the palliative care literature (5, 163,164). Yet, fewer than half of the selected articles focused explicitly on health communication.…”

Section: Discussion Main Findings Of the Scoping Reviewmentioning

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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“…Hope in the end‐of‐life context has been widely researched (Fanslow‐Brunjes, 2008; Mok et al, 2010). In a study of patients treated in hospices and palliative care centres, researchers showed that hope was considered one of the most important tools to enable the personalization and improvement of palliative care (Baczewska et al, 2019) and to integrate this knowledge into their practice health care professionals must understand the concept of hope in the end‐of‐life context (Archer et al, 2017; Chan et al, 2019; Chen et al, 2015; Daneault et al, 2016; McClement & Chochinov, 2008; Mok et al, 2010).…”

Section: Introductionmentioning

confidence: 99%

Hope pictured in drawings by patients newly diagnosed with advanced cancer

Hammer

Højgaard

Steig

et al. 2022

Journal of Clinical Nursing

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Background: Hope is an integral part of a dying person's needs and an important phenomenon that has not been satisfactorily explored. The tension between hope for a cure and the reality of being terminally ill is a paradox, which in the context of palliative cancer care, nurses and health care professionals must take into consideration. Objective:The purpose of this study was to elucidate the phenomenon of hope and to investigate the lived experiences of hope among newly diagnosed patients with advanced cancer. Method:The study used a phenomenological-visual method where drawings and post-drawing interviews were used. The participants were six patients who recently had been offered specialised palliative care treatment. They were five women and one man with different cancer diagnoses and between 30 and 82 years of age (median 65 years). The data consisted of six drawings and individual post-drawing interviews with the participants. The study was reported using the COREQ checklist. Results:The study revealed one main concern 'Being in hope' and hope appeared in four different dimensions; internal, external, relational and transcendental.Hopelessness was present at all times. Conclusion:Hope pictured in drawings was expressed through colour, shape, lines, symbols and metaphors, and hope incorporated internal, external, relational and transcendental aspects. Hope was constantly fighting against hopelessness and hope integrated with past, present and future.Relevance to clinical practice: Drawings, as well as other visual representations, are suitable tools when trying to understand an ineffable phenomenon such as hope experienced by people newly diagnosed with cancer.

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What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

et al. 2023

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Introduction/AimsHealth communication is central to effective, supportive amyotrophic lateral sclerosis (ALS) clinical care. Guidance for ALS communication is limited, focuses on diagnosis disclosure, and frequently relies on expert consensus and/or reviews. Patient‐based evidence is needed to guide ALS health communication. We investigated how the experiences of ALS patients and family caregivers can inform effective communication practices from diagnosis to end‐of‐life.MethodsData were drawn from the ALS Talk Project, an asynchronous, online focus group study. Seven focus groups and five interviews (105 participants) were conducted. Data were qualitatively analyzed using directed content analysis and the constant‐comparative approach.ResultsWe found four primary themes: communication content, communication circumstances, information sufficiency, and communication manner. Data indicate participants relied on clinicians for medical information but also wanted practical information; health communication should attend to the circumstances within which conversations occur; information must be sufficient for individual needs, without overwhelming; and an empathetic, direct, and honest manner facilitated trust. Participants identified communication challenges and strategies to improve communication across major themes, including stepwise approaches and conversations tailored to individuals and their heterogeneous disease experiences.DiscussionHealthcare professionals should discuss patient/caregiver communication preferences early in the therapeutic relationship, co‐develop a communication agreement, and update the agreement in response to changing needs and disease progression. This will foster regular discussion of information needs and promote timely discussions of challenging topics, including advance care, while giving patients and families a sense of control. Findings may have implications for other neuromuscular disease and/or seriously ill populations.

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Communicating with palliative care patients nearing the end of life, their families and carers

Cited by 3 publications

References 13 publications

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

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

Hope pictured in drawings by patients newly diagnosed with advanced cancer

What do people affected by amyotrophic lateral sclerosis want from health communications? Evidence from the ALS Talk Project

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