Wish to die in end-stage ALS

To the Editor: I have been following with great interest the articles, editorial, and letters dealing with various issues pertaining to wish to die in end-stage amyotrophic lateral sclerosis (ALS).1–5 Having had a special interest and having been involved in the management of patients with ALS in India during the last 30 years, I wish to share my experiences. Although mine is not a systematic study, I would like to convey the findings here. In the government-funded referral institute hospitals, 70 to 80% of patients with ALS belong to low and middle economic strata, with monthly income ranging from USD $50 to 500 per month and no access or means to afford life support systems at home or advanced technologies for communication. Despite these distinct disadvantages and limitations in health care, fewer than 20% (approximate figure) expressed desire to end their lives, the figure being much less than that reported by Albert et al. (43.4%).1 One difference may be that our patients were living with their extended families, the majority with their sons, and not in hospice or nursing homes. Albert et al. reported that 60% who wished to die and 48% who did not express the wish used hospice at baseline.1 This difference was not considered to be significant. Emotional security provided by the family members during the terminal stage of the disease may promote a positive attitude to illness. Strong faith in religion and cultural rituals also led many of our patients to accept the illness and death as God’s will. Albert et al. also reported that patients who expressed the wish to die had less comfort in religion and greater degree of hopelessness.1 In our experience, those who expressed the wish to die felt that they did not want to add to the financial burden of the caregiver and therefore did not want to live. It would be interesting to examine, if feasible, the issue of wish to die in end stage ALS in different populations with socioeconomic and religious diversity and various levels of health care.