Neurology clinicians' views on palliative care communication

Zehm, April; Hazeltine, Amanda M.; Greer, Joseph A.; Traeger, Lara; Nelson-Lowe, Margaret; Brizzi, Kate; Jacobsen, Juliet

doi:10.1212/cpj.0000000000000794

Cited by 12 publications

(8 citation statements)

References 29 publications

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“…Communication agreements should be revisited and updated in response to patient needs, disease progression, and/or the cyclic decision‐making experienced by PwALS 78 . A formal communication agreement animates recommendations for individualized communication, 11,15,17,46 and a systematic, structured approach to communication 79 …”

Section: Discussionmentioning

confidence: 99%

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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Section: Discussionmentioning

confidence: 99%

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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“…50 Communication challenges include when to begin goals of care discussions, how to support patients and caregivers during decision making, and how to increase familiarity with potential behavioral and communication problems in the future. 51…”

Section: Neuro-oncologymentioning

confidence: 99%

Clinical Guidance in Neuropalliative Care

et al. 2022

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“…28 Recent research in neurology palliative care identified the need for a systematic approach to communication in neurodegenerative diseases including early discussions of goals and priorities to inform later decision making, preferably with caregivers present. 29 Using standardized language and documenting conversations were also recommended strategies. 29…”

Section: Improving Clinician-patient Communicationmentioning

confidence: 99%

Strategies to Improve Clinician-Patient Communication Experiences for Patients With Neurologic Conditions

2021

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Abstract:Increasing research supports that effective clinician communication with patients and families leads to improved patient outcomes, higher patient satisfaction, and improved clinician experiences. As a result, patient- and family-centered communication is the focus of a 2020 American Academy of Neurology quality measure and part of neurology residency training milestones. Clinicians across training levels can implement strategies for improving patient- and family-centered communication, including optimizing the communication environment, using verbal and non-verbal skills, focusing on the patient’s agenda, practicing active listening, demonstrating respect and empathy, individualizing encounters to patient and family needs, and providing clear explanations. These skills can be tailored for specialized encounters (e.g. when wearing masks, telemedicine) and for electronic communication. By purposefully identifying and incorporating key communication skills in everyday practice, clinicians have the opportunity to improve patient care and satisfaction and their own experiences in neurology clinical practice.

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Neurology clinicians' views on palliative care communication

Cited by 12 publications

References 29 publications

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

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

Clinical Guidance in Neuropalliative Care

Strategies to Improve Clinician-Patient Communication Experiences for Patients With Neurologic Conditions

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