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End-of-life care often intense among hematopoietic stem cell transplant recipients

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September 25, 2018

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Emily E. Johnston

Patients who died within 1 year of undergoing inpatient allogeneic hematopoietic stem cell transplantation often received medically intense end-of-life care that may not have matched their wishes, according to a retrospective population-based analysis.

Emily E. Johnston, MD, assistant professor and member of the Institute of Cancer Outcomes and Survivorship in the division of pediatric hematology-oncology at University of Alabama, Birmingham, and colleagues also observed variations in end-of-life care according to patients’ age, underlying diagnosis and comorbidities at the time of HSCT. Specifically, they noted that high-intensity care at this stage may not be meeting patient needs.

“Our goal is to improve end-of-life care for people with cancer, particularly children, adolescents and young adults,” Johnston told HemOnc Today. “However, before we can work to improve end-of-life care, we need to know what end-of-life care patients are receiving.”

The population-based study included 2,135 patients who died within 1 year of undergoing inpatient allogeneic HSCT, between 2000 and 2013. Among them were 377 pediatric patients (aged 21 years or younger), 461 patients aged 22 to 39 years, and 1,297 patients aged 40 years old or older. Acute lymphoblastic leukemia represented the most common diagnosis (45%) in the pediatric cohort, and acute myeloid leukemia/myelodysplastic syndrome was most common in the 22-to-39-years (36%) and 40-years-or-older (52%) cohorts.

Patients spent an average of 105 days (standard deviation [SD], 52) in the hospital in their last year of life — with the most hospital days observed in the pediatric cohort (SD, 133 days) — and were readmitted an average of 1.3 times (SD, 0.6).

Markers of end-of-life care intensity included hospital mortality (83%), ICU admission (49%), intubation (45%), and hospitalization for the last 30 days of life (43%).

“This study revealed that patients who die within 1 year of stem cell transplant are receiving medically intense end-of-life care: 83% die in the hospital and 49% spend time in the ICU at the end of life,” Johnston said. “However, we do not know if this is the end-of-life care these patients and families wanted. Therefore, it is critical to do follow-up studies to better understand end-of-life goals for patients who die after stem cell transplant, particularly the high-risk groups identified in the study.”

Researchers found higher-intensity end-of-life care occurred more commonly among patients aged 15 to 21 years (OR = 2.6; 95% CI, 1.6-4.1), 30 to 39 years (OR = 1.8; 95% CI, 1.2-2.6), and 40 to 49 years (OR = 1.4; 95% CI, 1-1.9) compared with those aged 60 years or older.

Patients with AML/myelodysplastic syndrome were less likely to undergo a medically intense intervention than those with ALL (OR = 0.7; 95% CI, 0.6-0.9).

Also, medically intense interventions were more common among patients with comorbidities/complications (one comorbidity, OR = 1.6; 95% CI, 1.2-2.1; two comorbidities, OR = 2.5; 95% CI, 2-3.3). The most common comorbidities/complications were mucositis, infection, hypertension, renal failure and respiratory failure.

Increased use of palliative care may help curb the high rates of medically intense intervention at the end of life, according to the researchers.

“Palliative care involvement is associated with lower-intensity end-of-life care in adolescents and young adults with cancer and palliative care integration into inpatient stem cell transplant teams improves symptoms and psychologic distress,” Johnston said. “Therefore, routine use of palliative care in stem cell transplant, particularly high-risk groups, may both decrease medical intensity and improve quality of life of patients undergoing stem cell transplant.”

The rates of high-intensity end-of-life care appeared higher in this population compared with only oncology populations, according to the researchers.

“Given the high-intensity end-of-life care found in this study, we need to make sure that patients dying within 1 year of stem cell transplant are getting the end-of-life care they want,” Johnston said. “Additionally, starting end-of-life conversations earlier — meaning, more than 30 days before end of life — is associated with lower intensity end-of-life care. We can work to begin end-of-life conversations earlier.

“The goal is not to have all patients die at home or not spend time in the ICU, but to have patients die in the location they want after receiving the care that is consistent with their end-of-life goals,” Johnston added. by Rob Volansky

For more information:

Emily E. Johnston, MD, can be reached at Institute for Cancer Outcomes and Survivorship, 1600 7th Ave. S, Suite 500, Birmingham, AL 35233; e-mail:

Disclosures: Johnston reports no relevant financial disclosures. One author reports stock or other ownership in Corvus Pharmaceuticals and research funding from Adaptive Biotechnologies and Shire Pharmaceuticals.