Abstract
Background: People with sickle cell disease (SCD) have a life expectancy of <50 years, so understanding their end-of-life care is critical. Objective: We aimed to determine where individuals with SCD were dying and their patterns of care in the year preceding death to highlight end-of-life research priorities and possible opportunities for intervention. Design: Using the California SCD Data Collection Program database (containing administrative data, vital records, and Medicaid claims), we examined people with SCD who died between 2006 and 2015 (cases) at age <80 years and examined their hospital and emergency department (ED) utilization in their last year of life. Comparators included living controls with SCD matched 1:1 based on age, analysis year, insurance, and income. Results: We identified 486 people with SCD (cases) who died at a median age of 45 years (SD: 16 years). Most died in the hospital (63%) and ED (15%). In their last year of life, people with SCD were hospitalized for an average of 42 days (SD: 49 days) over five admissions. Inpatient admissions and ED visits were stable throughout the year until the month before death when acute care utilization sharply increased. In their last year of life, cases had more hospitalizations than controls, but similar ED utilization. Conclusions: People with SCD are dying acutely at a young age and most die in the hospital and the ED. Since clinicians caring for people with SCD currently cannot predict which acute events may be life-threatening, a comprehensive palliative approach to people with SCD must extend beyond chronic pain management and psychosocial support to include advance care planning.
| Original language | English (US) |
|---|---|
| Pages (from-to) | 24-32 |
| Number of pages | 9 |
| Journal | Journal of Palliative Medicine |
| Volume | 23 |
| Issue number | 1 |
| DOIs | |
| State | Published - Jan 2020 |
Fingerprint
Keywords
- end-of-life
- medical intensity
- sickle cell
- utilization
ASJC Scopus subject areas
- Nursing(all)
- Anesthesiology and Pain Medicine
Cite this
Acute Care Utilization at End of Life in Sickle Cell Disease : Highlighting the Need for a Palliative Approach. / Johnston, Emily E.; Adesina, Oyebimpe O.; Alvarez, Elysia; Amato, Heather; Paulukonis, Susan; Nichols, Ashley; Chamberlain, Lisa J.; Bhatia, Smita.
In: Journal of Palliative Medicine, Vol. 23, No. 1, 01.2020, p. 24-32.Research output: Contribution to journal › Article
}
TY - JOUR
T1 - Acute Care Utilization at End of Life in Sickle Cell Disease
T2 - Highlighting the Need for a Palliative Approach
AU - Johnston, Emily E.
AU - Adesina, Oyebimpe O.
AU - Alvarez, Elysia
AU - Amato, Heather
AU - Paulukonis, Susan
AU - Nichols, Ashley
AU - Chamberlain, Lisa J.
AU - Bhatia, Smita
PY - 2020/1
Y1 - 2020/1
N2 - Background: People with sickle cell disease (SCD) have a life expectancy of <50 years, so understanding their end-of-life care is critical. Objective: We aimed to determine where individuals with SCD were dying and their patterns of care in the year preceding death to highlight end-of-life research priorities and possible opportunities for intervention. Design: Using the California SCD Data Collection Program database (containing administrative data, vital records, and Medicaid claims), we examined people with SCD who died between 2006 and 2015 (cases) at age <80 years and examined their hospital and emergency department (ED) utilization in their last year of life. Comparators included living controls with SCD matched 1:1 based on age, analysis year, insurance, and income. Results: We identified 486 people with SCD (cases) who died at a median age of 45 years (SD: 16 years). Most died in the hospital (63%) and ED (15%). In their last year of life, people with SCD were hospitalized for an average of 42 days (SD: 49 days) over five admissions. Inpatient admissions and ED visits were stable throughout the year until the month before death when acute care utilization sharply increased. In their last year of life, cases had more hospitalizations than controls, but similar ED utilization. Conclusions: People with SCD are dying acutely at a young age and most die in the hospital and the ED. Since clinicians caring for people with SCD currently cannot predict which acute events may be life-threatening, a comprehensive palliative approach to people with SCD must extend beyond chronic pain management and psychosocial support to include advance care planning.
AB - Background: People with sickle cell disease (SCD) have a life expectancy of <50 years, so understanding their end-of-life care is critical. Objective: We aimed to determine where individuals with SCD were dying and their patterns of care in the year preceding death to highlight end-of-life research priorities and possible opportunities for intervention. Design: Using the California SCD Data Collection Program database (containing administrative data, vital records, and Medicaid claims), we examined people with SCD who died between 2006 and 2015 (cases) at age <80 years and examined their hospital and emergency department (ED) utilization in their last year of life. Comparators included living controls with SCD matched 1:1 based on age, analysis year, insurance, and income. Results: We identified 486 people with SCD (cases) who died at a median age of 45 years (SD: 16 years). Most died in the hospital (63%) and ED (15%). In their last year of life, people with SCD were hospitalized for an average of 42 days (SD: 49 days) over five admissions. Inpatient admissions and ED visits were stable throughout the year until the month before death when acute care utilization sharply increased. In their last year of life, cases had more hospitalizations than controls, but similar ED utilization. Conclusions: People with SCD are dying acutely at a young age and most die in the hospital and the ED. Since clinicians caring for people with SCD currently cannot predict which acute events may be life-threatening, a comprehensive palliative approach to people with SCD must extend beyond chronic pain management and psychosocial support to include advance care planning.
KW - end-of-life
KW - medical intensity
KW - sickle cell
KW - utilization
UR - http://www.scopus.com/inward/record.url?scp=85076380318&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85076380318&partnerID=8YFLogxK
U2 - 10.1089/jpm.2018.0649
DO - 10.1089/jpm.2018.0649
M3 - Article
C2 - 31390292
AN - SCOPUS:85076380318
VL - 23
SP - 24
EP - 32
JO - Journal of Palliative Medicine
JF - Journal of Palliative Medicine
SN - 1096-6218
IS - 1
ER -