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Table 1. Caregivers’ Reports of Symptoms among ALS Patients during their Last Month of Life

Symptom Frequency

% (N) Difficulty communicating Never/a few times 38 (19) Frequently 20 (10) Almost all of the time/constantly 42 (21) Shortness of breath Never/a few times 42 (21) Frequently 36 (18) Almost all of the time/constantly 20 (10) Missing 2 (1) Insomnia Never/a few times 58 (29) Frequently 10 (5) Almost all of the time/constantly 32 (16) Discomfort other than pain Never/a few times 72 (36) Frequently 28 (14) Almost all of the time/constantly 20 (10)

Table 1. Caregivers’ Reports of Symptoms among ALS Patients during their Last Month of

Life (cont)

Symptom Frequency

% (N) Depressed mood Never/a few times 60 (30) Frequently 24 (12) Almost all of the time/constantly 16 (8) Choking episode Never/a few times 66 (33) Frequently 16 (8) Almost all of the time/constantly 18 (9) Anxiety Never/a few times 70 (35) Frequently 16 (8) Almost all of the time/constantly 14 (7) Confusion

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Never/a few times 90 (45) Frequently 10 (5) Almost all of the time/constantly 0 (0)

The corresponding author may be contacted at [email protected].

Table 2. Caregivers’ Reports of Quality of Death among Individuals with ALS

% (N) Mentally alert All of the time 64 (32) Some of the time 32 (16) None of the time 4 (2) Accepting of death Very 62 (31) Somewhat 28 (14) Not accepting 4 (2) Unsure 6 (3) Aware death imminent Very 80 (40) Somewhat 12 (6) Not aware 4 (2) Unsure 4 (2) At peace before death Very much 60 (30) Somewhat 32 (16) Not at all 2 (1) Unsure 6 (3)

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Table 2. Caregivers’ Reports of Quality of Death among Individuals with ALS (cont)

% (N) Said goodbyes to loved ones Most 76 (38) Some 12 (6) None 8 (4) Unsure 4 (2) Completed important tasks before death Most 68 (34) Some 20 (10) None 10 (5) Unsure 2 (1) Visited by family and friends Many 80 (40) A few 20 (10) Visited by spiritual counselor Yes 70 (35) No 28 (14) Missing 2 (1) Family and friends attended death Many 44 (22)

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Table 2. Caregivers’ Reports of Quality of Death among Individuals with ALS (cont)

% (N) A few 36 (18) None 20 (10) Distress at being a burden Very 30 (15) Somewhat 40 (20) Not at all 22 (11) Unsure 8 (4) *All queries were regarding the last month of life, except “mentally alert,” which was regarding the last week of life.

The corresponding author may be contacted at [email protected].

Final Month ALS manuscript – SKL 04/05/02