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Wish to die in end-stage ALS
S M Albert1, J G Rabkin, M L Del Bene
1The Eleanor and Lou Gehrig MDA/ALS Research Center, Department of Neurology, Columbia University, New York, NY 10032, USA. sma10@columbia.edu
Neurology
|July 13, 2005
Summary
In advanced Amyotrophic Lateral Sclerosis (ALS), a small percentage of patients wish to hasten death, with some acting on it. This desire is linked to hopelessness and reduced optimism, not solely depression.
Area of Science:
- Palliative Care
- Neurology
- Psychiatry
Background:
- Estimates of hastened dying in seriously ill patients vary widely in retrospective studies.
- Understanding the wish to die in terminal illness is crucial for patient care.
Purpose of the Study:
- To prospectively examine the wish to die in patients with advanced Amyotrophic Lateral Sclerosis (ALS).
- To explore factors associated with the wish to die and hastening of death in end-stage disease.
Main Methods:
- Monthly psychosocial interviews with 80 advanced ALS patients and their caregivers.
- Inclusion of diagnostic interviews for depression and assessment of sociodemographic features and disease severity.
Main Results:
- 18.9% of patients expressed a wish to die; 5.7% hastened dying.
- Wish to die was associated with greater hopelessness, less optimism, and less religious comfort.
- Patients who hastened dying reported reduced suffering and increased control.
Conclusions:
- The desire to hasten dying in end-stage ALS is complex and not solely attributable to depression.
- Findings suggest a need for nuanced understanding beyond simple diagnostic criteria.