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NEUROLOGY 2005;65:68-74
© 2005 American Academy of Neurology

Wish to die in end-stage ALS

S. M. Albert, PhD, J. G. Rabkin, PhD, MPH, M. L. Del Bene, MS, NP-P, T. Tider, MSW, I. O'Sullivan, MS, NP-P, L. P. Rowland, MD and H. Mitsumoto, MD

From the Eleanor and Lou Gehrig MDA/ALS Research Center and Department of Neurology (Drs. Rabkin, Tider, and Mitsumoto), Gertrude H. Sergievsky Center (Drs. Rabkin, O'Sullivan, and Rowland), Department of Sociomedical Science (Dr. Rabkin), and Department of Psychiatry (Dr. Del Bene), Columbia University, New York, NY.

Address correspondence and reprint requests to Dr Albert, Gertrude H. Sergievsky Center, PH19, Columbia University, 630 W. 168 St., New York, NY 10032; e-mail: sma10{at}columbia.edu

Background: In retrospective studies, estimates of hastened dying among seriously ill patients range from <2% in one national survey to as much as 20% in end-stage disease cohorts.

Objective: To examine, in prospective studies, dying patients in the months before death, in order to understand the wish to die.

Methods: Patients with advanced ALS with a high likelihood of death or need for tracheostomy within 6 months were identified. Patients were assessed monthly with an extensive psychosocial interview, including a diagnostic interview for depression. Family caregivers were interviewed on the same schedule and also after patient deaths.

Results: Eighty patients with ALS were enrolled, 63% of eligible patients; 53 died over follow-up. Ten (18.9%) of the 53 expressed the wish to die, and 3 (5.7%) hastened dying. Patients expressing the wish to die did not differ in sociodemographic features, ALS severity, or perceived burden of family caregivers. They were more likely to meet criteria for depression, but differences were smaller when suicidality was excluded from the depression interview. Patients who expressed the wish to die reported less optimism, less comfort in religion, and greater hopelessness. Compared with patients unable to act on the wish to die, patients who hastened dying reported reduction in suffering and increased perception of control over the disease in the final weeks of life.

Conclusion: These findings suggest caution in concluding that the desire to hasten dying in end-stage disease is simply a feature of depression.


Additional material related to this article can be found on the Neurology Web site. Go to www.neurology.org and scroll down the Table of Contents for the July 12 issue to find the title link for this article.

Commentary, see page 1

Editorial, see page 9

See also page 62

Supported by the National Institute of Mental Health (MH62200).

Received January 26, 2005. Accepted in final form April 18, 2005.


Related articles in Neurology:

July 12 Highlights and Commentary: ALS, depression, and desire for a hastened death: (How) are they related?

Neurology 2005 65: 1. [Full Text]  

Prevalence of depressive disorders and change over time in late-stage ALS
J. G. Rabkin, S. M. Albert, M. L. Del Bene, I. O'Sullivan, T. Tider, L. P. Rowland, and H. Mitsumoto
Neurology 2005 65: 62-67. [Abstract] [Full Text]  

Exit strategies in ALS: An influence of depression or despair?
Richard K. Olney and Catherine Lomen-Hoerth
Neurology 2005 65: 9-10. [Full Text]  



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Correspondence:

Read all Correspondence

Wish to die in end-stage ALS
Philip R. Kennedy, MD, PhD
Neurology Online, 11 Oct 2005 [Full text]
Reply to Kennedy
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Neurology Online, 11 Oct 2005 [Full text]
Wish to die in end-stage ALS
Mandaville Gourie-Devi, et al.
Neurology Online, 29 Jun 2006 [Full text]
Reply from the Author
Steven M. Albert
Neurology Online, 29 Jun 2006 [Full text]



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