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Eye-Tracking Control to Assess Cognitive Functions in Patients with Amyotrophic Lateral Sclerosis

Eye-Tracking Control to Assess Cognitive Functions in Patients with Amyotrophic Lateral Sclerosis

Published on: October 13, 2016

Coping and end-of-life decision-making in ALS: A qualitative interview study.

Celia Spoden^1,2, Olga Wenzel¹, Anke Erdmann^1,3

¹Institute for Ethics, History and Philosophy of Medicine, Hannover Medical School, Hannover, Germany.

|June 26, 2024

Summary

People with amyotrophic lateral sclerosis (ALS) use varied coping strategies, like planning or avoiding end-of-life discussions, influencing their support needs. Understanding these processes is key for effective end-of-life care counseling.

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Published on: February 16, 2011

Area of Science:

Neurology
Psychology
Palliative Care

Background:

Amyotrophic lateral sclerosis (ALS) presents complex challenges for patients regarding end-of-life decisions.
Understanding patient coping mechanisms and support needs is crucial for effective palliative care.

Purpose of the Study:

To explore how individuals with ALS cope with their diagnosis and engage in end-of-life decision-making.
To identify informational and supportive needs related to life-sustaining treatment and end-of-life care.
To examine factors influencing the wish to live or die in people with ALS.

Main Methods:

Qualitative interview study with 13 people with ALS in Germany.
Grounded theory-based approach for data collection and analysis.
Interviews conducted between March 2019 and April 2021.

Main Results:

Close relationships identified between coping strategies, informational needs, and decision-making preparedness.
Two main coping strategies: 'avoid thinking about end-of-life' and 'planning ahead'.
Planning ahead further differentiated into 'withdrawing from life' and 'searching for new meaning/preparing for treatment' patterns.
Coping strategies are influenced by individual perceptions, healthcare professionals, family, disease progression, and healthcare services.
Information and counseling needs varied significantly based on coping strategies and could change over time.

Conclusions:

Deep insight into coping processes is essential for understanding end-of-life decision-making in people with ALS (PALS).
Healthcare professionals should acknowledge illness experiences beyond medical aspects.
Fostering coping as a biographical process can enhance support for PALS.