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

Abstract

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.

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

“…Our analysis furthers this body of research by identifying what and how information should be communicated. We confirm health communication as central to clinical care for people affected by ALS 2 and answer the call to make actionable recommendations and guidance to support clinicians caring for ALS patients 46,92 Based on evidence from patients and caregivers, we provide strategies that can be adopted into clinical practice to improve health communication from the time of first symptoms to advance care planning. In particular, we recommend that clinicians and patients co‐develop an adaptable communication agreement that is responsive to personal preferences, sensitive to individual circumstances, and will guide health communication throughout the disease course.…”

Overcoming therapeutic nihilism. Breaking bad news of amyotrophic lateral sclerosis—a patient-centred perspective in rare diseases

“…Communication skills are thus crucial, as is experience with treating patients with this particular disease: providing information to the patient requires preparation, time, intimacy, tact, and respect. Unfortunately, systematic research related to effective communication regarding endof-life for persons with amyotrophic lateral sclerosis are still lacking [16]. However, it is possible to highlight some important elements.…”

Meanings and Experiences of End-of-Life Patients and Their Family Caregivers in Hospital-to-Home Transitions: A Constructivist Grounded Theory Study

“…Thus, the repercussions associated with the death and dying process justify a holistic and integrated approach that ensures human dignity and quality of life. Published data focusing on EoL care underlines the importance of assessing palliative needs in terminally ill patients and reinforces the importance of addressing the issue of terminality with all those who face this reality [ 13 , 14 ].…”