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| NI FEATURE: THE EDITORIAL DEBATE-- PROS AND CONS |
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| Year : 2017 | Volume
: 65
| Issue : 1 | Page : 16-17 |
Death wish in patients with amyotrophic lateral sclerosis
Sudesh Prabhakar
Department of Neurology, Fortis Hospital, Sector 62, Mohali; Department of Neurology, PGIMER, Chandigarh, India
| Date of Web Publication | 12-Jan-2017 |
Correspondence Address:
Prof. Sudesh Prabhakar
Department of Neurology, Fortis Hospital, Sector 62, Mohali, Chandigarh; Former Professor and Head Neurology, PGIMER, Chandigarh, 160012
India
 Source of Support: None, Conflict of Interest: None  | Check |
DOI: 10.4103/0028-3886.198178
How to cite this article:
Prabhakar S. Death wish in patients with amyotrophic lateral sclerosis. Neurol India 2017;65:16-7 |
Amyotrophic lateral sclerosis (ALS) is a debilitating, degenerative neurological illness like any other chronic disease. It has a devastating effect on the psyche of the patients as well as family members. ALS is associated with the inability of the patient to perform most of the activities on their own with dependency on others. This leads to a feeling of incompleteness in life and the “wish to die.”
The studies on the “wish to die” among patients suffering from chronic debilitating diseases are in infancy; and, those pertaining to neurological conditions are further scanty. This has invariability been confused with disability and depression due to the pain of malignancy and the inability to perform work.
Wijngaarden et al.,[1] in a review article, discussed the “wish to die” (WTD) in elderly patients and concluded that the WTD is a multifactorial phenomenon that needs further evaluation.[1] The authors further stated that there is a need to separate patients who are 'tired of life' and those who are 'depressed.' Stutzki et al., reported the data of patients of ALS and 62 care givers. The wish to hasten death was associated with a poor quality of life and psychological factors like depression and loneliness.[2]
Depression is not one of the important factors for the wish to hasten death (WTHD). Rabkinet al.[3] studied 329 cases of ALS and concluded that depression was only present in 37% of cases of ALS, who had the WTHD. The duration of ALS and financial status were also not related to depression.
Maessen et al., studied the factors that influenced end of life practices and concluded that many subjective factors may be responsible for euthanasia or physician assisted suicide.[4] Other authors have suggested that the attitude about death and religious feelings in a patient determines the ultimate “wish to die.”[5] The WTD was not related to cognitive defects or behavioural changes.
In the Indian scenario, social security available to an ailing individual in the form of family support is an important factor that prevents patients from going into depression. It is unlike the western countries where these patients are usually managed in nursing homes/institutions and family members may be visiting them once a month or so. The deep religious feelings of Indians and the belief in “karmas” is another significant factor which provides solace in the end of life conditions preventing a person from getting suicidal desires, unless he or she is in severe pain. Thus, the “wish to die” in Indian patients in terminal illnesses like ALS may not be as prominent as in western countries. However, no data is available from India regarding studies in this aspect of the state of mind in neurological diseases.
Dr. Gourie Devi, has been the first to think about the WTD, in patients suffering from ALS in India, and has published her data in the present issue of Neurology India (Gourie Devi et al).[6] It has been concluded that fewer patients express the WTD in India due to their belief in spiritualty and Karma.
An excellent effort has been made by Gourie Devi et al.,[6] in highlighting a field never explored earlier; however, a large study is the need of the hour and data needs to be expanded further, by studying a larger number of patients of ALS and comparing them with those having other chronic diseases and malignancies.
There is a need to further validate the Wish-to-Death Questionnaire (WDQ). The depression, hopelessness, suicidal ideation and “wish to die” have to be separated quantitatively so that inter-rater reliability and test-retest reliability can be tested properly, which somehow is not possible without studying a large number of patients; and, by properly analysing the validity of each question in different domains by involving psychiatrists, psychologists, people in public health field and neurologists.
| » References | |  |
| 1. | Wijngaarden.E, Leget C, Goassensen A. Experiences and motivations underlying wishes to die in older people who are tired of living: A research area in its infancy. Omega (Westport). 2014.69, 191-216.  |
| 2. | Stutzki R, Weber M, Reiter-theil S, Simmen U, Borasio GD, Jox RJ. Attitudes towards hastened death in ALS; a prospective study of patients and family caregivers. Amyotroph Lateral Scler Frontotemporal Degener 2014; 15:68-76. |
| 3. | Rabkin JG, Goetz R, Factor-Litvak P, Hupf J, McElhiney M, Singleton J, et al, Depression and wish to die in a multicenter cohort of ALS patients. Amyotroph Lateral Scler Frontotemporal Degener 2015, 16,265-73. |
| 4. | Maessen M, Veldink JH, Onwuteaka-Philipsen BD, de Vries JM, Wokke JH, van der Wal G, et al. Trends and determinants of end-of-life practices in ALS in the Netherlands. Neurology 2009; 73, 954-61. |
| 5. | Bonnewyn A, Shah A, Bruffaerts R, Demyttenaere K. Are religiousness and death attitudes associated with the wish to die in older people? Int Psychogeriatr 2016;28:397-404. |
| 6. | Gourie Devi M, Gupta R, Sharma V, Pardasai V, Maheshwari S. Death wish among patients with amyotrophic lateral sclerosis: An Indian perspective. Neurol India 2017;65:46-51. |
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