Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Methods: The authors conducted a multisite, retrospective study of AYA patients with cancer aged 15 to 39 years who died between January 2013 and December 2016 at 3 academic sites. Medical record-based EOL care outcomes included hospice referral, palliative care (PC) consultation, cancer treatment within the last month of life, and location of death. Two measures of poverty were applied: 1) zip code with a median income =200% of the federal poverty level; and 2) public insurance or lack of insurance. Logistic regression analyses were conducted.
Results: A total of 252 AYA cancer decedents were identified. Approximately 41% lived in a high-poverty zip code and 48% had public insurance or lacked insurance; approximately 70% had at least 1 poverty indicator. Nearly 40% had a hospice referral, 60% had a PC consultation (76% on an inpatient basis), 38% received EOL cancer treatment, and 39% died in the hospital. In bivariable analyses, AYA patients living in low-income zip codes were found to be less likely to enroll in hospice (P = .01), have an early PC referral (P = .01), or receive EOL cancer treatment (P = .03), although only EOL cancer treatment met statistical significance in multivariable models. No differences with regard to location of death (P = .99) were observed.
Conclusions: AYA patients with cancer experience low rates of hospice referral and high rates of in-hospital death regardless of socioeconomic status. Future studies should evaluate early inpatient PC referrals as a possible method for improving EOL care.
Background: Immune checkpoint inhibitors (ICIs) have revolutionized treatment for many patients with advanced cancer. Little is known about ICI use near the end of life.
Objective: To describe ICI use near the end of life.
Design: Retrospective study of patients who received ICIs and died.
Setting/Subjects: Patients treated with ICIs who died between August 2014 and December 2018 (N = 441) at the University of Iowa.
Measurements: Comparisons were made between patients who received ICIs =30 days versus patients who received ICIs >30 days before death. The same analysis was done using a cutoff of 90 days.
Results: Two hundred ninety-four (67%) patients received ICIs in the last 90 days of life and 117 (27%) patients received ICIs in the last 30 days of life. Patients who received ICIs in the last 30 days of life received fewer mean doses and more often =3 total doses. They also had higher mean Eastern Cooperative Oncology Group (ECOG) scores, more patients with ECOG =3, higher rates of dying in the hospital, and lower hospice enrollment. Patients treated with ICIs in the last 90 days of life received fewer doses, more often =3 total doses, had a higher mean ECOG score, more patients with ECOG =3, and lower hospice enrollment. $7.1 million USD was spent on ICI medications in the last 90 days of life.
Conclusion: ICI use near the end of life is associated with poor performance status, lower hospice enrollment, dying in the hospital, financial toxicity, and minimal clinical benefit.
BACKGROUND: Immune checkpoint inhibitors have changed the landscape of cancer care by increasing progression-free and overall survival in some patients with cancer. We evaluated use and variables contributing to immune checkpoint inhibitor treatment near the end of life.
METHODS: We studied 157 patients who received immune checkpoint inhibitors and died between January 2015 and December 2018. All patients had a palliative care consult any time between starting an immune checkpoint inhibitor and death. Univariate and multivariate models were used to examine variables related to immune checkpoint inhibitor use near the end of life.
RESULTS: Among 157 patients studied, 42 (27%) received a dose of immune checkpoint inhibitor in the last 30 days of life. Those who received treatment in the last 30 days of life had lower hospice enrollment (19 [45%] vs 78 [69%], P = .007) and higher rates of dying in the hospital (23 [56%] vs 33 [29%], P = .002). The percentage of patients with Eastern Cooperative Oncology Group (ECOG) =3 at the time of last immune checkpoint inhibitor dose was higher in the group that received immune checkpoint inhibitor treatment in the last 30 days of life (11 [26%] vs 9 [8%], P = .003). Lack of traditional chemotherapy after immune checkpoint inhibitor, ECOG =3, and lack of hospice enrollment were independently associated with receiving immune checkpoint inhibitor in the last 30 days of life.
CONCLUSION: Immune checkpoint inhibitor use in the last 30 days of life is common and associated with poor performance status, lower hospice enrollment, and dying in the hospital.
Background: Growing evidence suggests that pediatric palliative care (PPC) teams influence the care received by children and young adults with chronic, life-limiting illnesses. Little is known about how PPC involvement affects advance care planning (ACP) and circumstances of death in pediatric populations with a wide range of diagnoses.
Objective: To determine the relationship between PPC involvement, ACP, and circumstances of death for pediatric patients.
Design: A retrospective chart review of 558 pediatric patients who died between January 1, 2012 and December 31, 2016 was conducted. Descriptive statistics were used to characterize the sample. A multivariable logistic regression was used to obtain associations between PPC involvement and ACP.
Setting: Large, multidisciplinary tertiary care center in a rural state.
Measurements: Data abstracted for each patient included the following: demographic information, diagnosis, location of primary unit, hospice involvement, goals of care (GOC), code status, Physician Orders for Life-Sustaining Treatment (POLST) completion, and location of death.
Results: Patients with PPC involvement were more likely to have had ACP addressed before death. After adjusting for covariates in the model, patients with PPC were more likely to have their GOC documented (odds ratio [OR] = 96.93), completion of POLST (OR = 24.06), do-not-resuscitate code status (OR = 7.71), and hospice involvement at the time of death (OR = 11.70) compared with those who did not receive PPC.
Conclusions: Pediatric patients are more likely to have ACP addressed if they have PPC involvement. Patients with chronic complex conditions are most likely to receive palliative care.
Background: The University of Iowa Hospitals and Clinics (UIHC) has a palliative care (PC) volunteering program that has recruited college students since 2010. There is little research on the effects of PC volunteering on collegiate volunteers.
Objective: The objective is to determine the impact of PC volunteering on college students' professional lives and on their interest in PC.
Design/Setting/Measurements: The UIHC Volunteer Services office sent a 25-question survey with closed- and open-ended items to previous and current PC college volunteers. We used descriptive statistics to characterize the sample. Free text responses were analyzed using a descriptive qualitative approach with three independent coders.
Results: Seventy-one percent of respondents (23/33) reported they were more likely to pursue PC after volunteering. PC volunteering helped change views of patient care and abilities to discuss end-of-life situations. Ninety-one percent served as informal ambassadors by discussing PC with family and peers. Major themes identified include motivation to volunteer for patient contact and interest in learning about PC. Respondents described meaningful patient interactions, lessons in empathy, and the power of listening.
Conclusions: These results suggest that PC volunteering affects career choices and helps volunteers gain needed listening skills for patient care in the future. The unique exposure and interactions with PC patients and their families have changed volunteers' understanding of health care. PC volunteers speak in their social networks about PC. This experience may increase the likelihood of student volunteers to pursue careers in PC.
PURPOSE OF REVIEW: Despite increased survivorship and the subsequent need for chronic management of cancer, the association of self-management and palliative care is still emerging within cancer care. Routine and timely use of self-management strategies in the palliative setting can help reduce self-management burden and maximize quality of life. In this review, we consider the complementary relationship of self-management and palliative care and how they support living with cancer as a chronic illness.
RECENT FINDINGS: Recent studies provide evidence of support among patients, family caregivers and healthcare professionals for integration of self-management interventions into palliative cancer care. As a guiding framework, components of the revised Self and Family Management Framework correspond to the provision of palliative care across the care trajectory, including the phases of curative care, palliative care, end-of-life care and bereavement. Additional work among self-management partners facing cancer and other life-limiting illnesses, that is patients, family caregivers and healthcare professionals, would be useful in developing interventions that incorporate self-management and palliative care to improve health outcomes.
SUMMARY: There is an increasing acceptance of the complementarity of self-management and palliative care in cancer care. Their integration can support patients with cancer and their family caregivers across the care trajectory.