Dave K
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- Jul 13, 2015
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It troubles me to read about PALS who fear suffocation and choking when those fears are not warranted. When doctors say “respiratory failure,” they need to do a better job explaining that this does not mean "suffocating" or “choking.” Virtually all researchers have found that the vast majority of PALS pass peacefully. According to researchers, death in the majority of cases is peaceful, following lengthening periods of sleepiness, gradually resulting in a coma. While there is no guarantee every PALS will have a peaceful death, it has been found that the proportion of peaceful deaths among ALS patients compares favorably with non-ALS populations. “Thus,” researchers have reported, “the chances of ALS patients for a peaceful death appear to be above, rather than below, average.” Researchers and clinicians recommend that to relieve unwarranted fears and increase the quality of life of ALS patients and their relatives, they should be informed proactively that death from choking is exceptional and that death in the majority of cases is peaceful. Here is what the researchers have written on the topic:
Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616 (defining "a good or peaceful death as the type of death one would choose if there were a choice. . . . The most important result, confirming clinical experience, is that the vast majority of ALS patients (G 88%, UK 98%; p=0.11) died peacefully and no patient 'choked to death' ") (https://www.researchgate.net/profil..._sclerosis/links/0fcfd50fd09fd4bee7000000.pdf)
The ALS Association ("Data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project suggest that most people die peacefully with this disease.”)
A Peaceful Passing | MDA/ALS Newsmagazine.
“A professional’s guide to end of life care in motor neurone disease (MND)” (http://www.mndassociation.org/wp-co...to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf)
Neudert C., et al., The course of the terminal phase in patients with amyotrophic lateral sclerosis. J Neurol. 2001; 248:612-616 (defining "a good or peaceful death as the type of death one would choose if there were a choice. . . . The most important result, confirming clinical experience, is that the vast majority of ALS patients (G 88%, UK 98%; p=0.11) died peacefully and no patient 'choked to death' ") (https://www.researchgate.net/profil..._sclerosis/links/0fcfd50fd09fd4bee7000000.pdf)
The ALS Association ("Data on over 100 people with ALS who were enrolled in the ALS C.A.R.E. project suggest that most people die peacefully with this disease.”)
A Peaceful Passing | MDA/ALS Newsmagazine.
“A professional’s guide to end of life care in motor neurone disease (MND)” (http://www.mndassociation.org/wp-co...to-end-of-life-care-in-MND-v1.0-Jan16-web.pdf)