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Original Investigation |

Restricting Symptoms in the Last Year of Life:  A Prospective Cohort Study

Sarwat I. Chaudhry, MD1; Terrence E. Murphy, PhD2; Evelyne Gahbauer, MD, MPH2; L. Scott Sussman, MD3; Heather G. Allore, PhD2; Thomas M. Gill, MD2,4
[+] Author Affiliations
1Section of General Medicine, Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut
2Section of Geriatrics, Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut
3Yale–New Haven Hospital, New Haven, Connecticut
4Departmentof Chronic Disease Epidemiology, Yale School of Public Health, New Haven, Connecticut
JAMA Intern Med. 2013;173(16):1534-1540. doi:10.1001/jamainternmed.2013.8732.
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Importance  Freedom from symptoms is an important determinant of a good death, but little is known about symptom occurrence during the last year of life.

Objective  To evaluate the monthly occurrence of physical and psychological symptoms leading to restrictions in daily activities (ie, restricting symptoms) among older persons during the last year of life and to determine the associations of demographic and clinical factors with symptom occurrence.

Design, Setting, and Participants  Prospective cohort study. Comprehensive assessments were completed every 18 months, and monthly interviews were conducted to assess the presence of restricting symptoms. Of 1002 nondisabled community-dwelling individuals 70 years or older in greater New Haven, Connecticut, eligible to participate, 754 agreed and were enrolled between 1998 and 1999.

Main Outcomes and Measures  The primary outcome was the monthly occurrence of restricting symptoms as a dichotomous outcome. The monthly mean count of restricting symptoms was a secondary outcome.

Results  Among the 491 participants who died after their first interview and before June 30, 2011, mean age at death was 85.8 years, 61.9% were women, and 9.0% were nonwhite. The mean number of comorbid conditions was 2.4, and 73.1% had multimorbidity. The monthly occurrence of restricting symptoms was fairly constant from 12 months before death (20.4%) until 5 months before death (27.4%), when it began to increase rapidly, reaching 57.2% in the month before death. In multivariable analysis, age younger than 85 years (odds ratio [OR], 1.30 [95% CI, 1.07-1.57]), multimorbidity (OR, 1.38 [95% CI, 1.09-1.75]), and proximity to time of death (OR, 1.14 per month [95% CI, 1.11-1.16]) were significantly associated with the monthly occurrence of restricting symptoms. Participants who died of cancer had higher monthly symptom occurrence (OR, 1.80 [95% CI, 1.03-3.14]) than participants who died of sudden death, although this difference was only marginally significant (P = .04). Symptom burden did not otherwise differ substantially according to condition leading to death.

Conclusions and Relevance  Restricting symptoms are common during the last year of life, increasing substantially approximately 5 months before death. Our results highlight the importance of assessing and managing symptoms in older patients, particularly those with multimorbidity.

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Figure 1.
Occurrence of Each Restricting Symptom in the Last Year of Life

Monthly occurrence of each specific symptom was calculated by dividing the number of participants in each month with that symptom by the total number of participants reporting in that same month. The 15 symptoms were divided among 3 panels to enhance visual clarity.

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Figure 2.
Monthly Occurrence of 1 or More Restricting Symptoms in the Last Year of Life

Monthly occurrence was calculated by dividing the number of participants with 1 or more restricting symptoms in that month by the number interviewed in the same month. Bars denote 1 standard error around mean values.

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Place holder to copy figure label and caption
Figure 3.
Monthly Occurrence of 1 or More Restricting Symptoms in the Last Year of Life by Condition Leading to Death

Monthly occurrence was calculated for each condition leading to death by dividing the number of participants with 1 or more restricting symptoms in that month by the number interviewed in that month.

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