Palliative care specialists can aid in the care of patients with amyotrophic lateral sclerosis (ALS). In this article, we describe our 1‐year experience incorporating a palliative care specialist into the ALS multidisciplinary team. We describe our integration model, patient selection, and visit content. Of 500 total clinic patients, 74 (14.8%) were seen by the palliative care specialist in 1 year. Referral was most often triggered by advance care planning needs (91%). In the initial visit with the palliative care specialist, topics most frequently covered included goals of care (84%), anxiety/depression (35%), and medical decision‐making about feeding tubes (27%) or tracheostomy (31%). Symptom management comprised a relatively small number of the visits, and duration of visits was limited by patient fatigue. Patients with complex goals of care may benefit from the input of a palliative care specialist, and unique integration models may help to facilitate care delivery. Muscle Nerve 60: 137–140, 2019
Introduction: The increasing prevalence, high symptom burden, and medical advances that often prolong the advanced phase of heart failure mandate an organized and thoughtful approach to medical decision making. However, many clinicians have difficulty discussing prognosis and goals of care with patients. Barriers include disease-and therapy-specific prognostication challenges in heart failure and a lack of evidence-based primary palliative care education initiatives. Methods: In response, we developed this 45-minute training module, which consists of a case-based small-group session and a communication guide. The curriculum highlights prognostication challenges in heart failure and introduces an illness trajectorybased framework to cue iterative goals of care conversations. Results: We piloted this learning module with 46 internal medicine residents and interdisciplinary palliative care fellows in groups of three to 15 and obtained anonymous quantitative and qualitative postsession learner survey data to examine feasibility and acceptability. Trainees rated the session highly. One hundred percent of learners either strongly agreed or agreed the session was clinically useful. Learners unanimously found the teaching methods effective, and most felt they could easily apply these skills to their clinical work. In open-ended feedback, learners said the session gave them a better understanding of the heart failure illness trajectory, an improved framework for discussing goals of care with heart failure patients, and specific language to use when having these discussions. Discussion: This module represents a new paradigm for teaching both prognostication and advance care planning in heart failure in which illness trajectory guides timing and content of goals of care conversations.
BackgroundThe communication process of preparing patients and families facing progressive neurodegenerative diseases for future illness has not been empirically elucidated; the goal of this qualitative study was to explore neurology interdisciplinary health professionals' communication experiences, including current approaches, facilitators, and challenges.MethodsThree focus groups were conducted with 22 clinicians representing a range of health professions from several multidisciplinary neurology outpatient clinics at a large academic medical center. A thematic analysis approach was used to develop a coding structure and identify overarching themes.ResultsNeurology clinicians highlighted that in their practice, (1) conversations are triggered by acute events and practical needs; (2) conversations occur routinely but are rarely documented; (3) loss of patient capacity and resultant surrogate decision-making can be ethically fraught, especially in times of family conflict; (4) prognostic uncertainty, unfamiliarity with disease trajectories, and patient or surrogate avoidance pose communication challenges; and (5) generalist- and specialty-level palliative care roles should be better defined.ConclusionsThere is a need for a systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.