scholarly journals Pediatric-Specific End-of-Life Care Quality Measures: An Unmet Need of a Vulnerable Population

2017 ◽  
Vol 13 (10) ◽  
pp. e874-e880 ◽  
Author(s):  
Emily E. Johnston ◽  
Abby R. Rosenberg ◽  
Arif H. Kamal

We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services. The unique psychosocial issues facing families who are losing a child include challenges for parent decision makers and young siblings. Furthermore, the focus on advance directive documentation in adult care may be less relevant in pediatrics because parental decision makers are available. Health care quality measures provide a framework for tracking the care provided and aid in agency and provider accountability, reimbursement, and educated patient choice for location of care. The National Quality Forum, Joint Commission, and other groups have developed several end-of-life measures. However, none of the current quality measures focus on the unique needs of dying pediatric patients and their caregivers. To evolve the existing infrastructure to better measure and report quality pediatric end-of-life care, we propose two changes. First, we outline how existing adult quality measures may be modified to better address pediatric end-of-life care. Second, we suggest the formation of a pediatric quality measure end-of-life task force. These are the next steps to evolving end-of-life quality measures to better fit the needs of seriously ill children.

2017 ◽  
Vol 13 (10) ◽  
pp. e881-e888 ◽  
Author(s):  
Sandra L. Pedraza ◽  
Stacey Culp ◽  
Mark Knestrick ◽  
Evan Falkenstine ◽  
Alvin H. Moss

Purpose: Many patients with advanced cancer receive aggressive treatment near the end of life. The Physician Orders for Life-Sustaining Treatment (POLST) form is an innovation that converts patient preferences into medical orders. We compared the end-of-life care of patients with advanced cancer who had completed POLST forms with that of patients who had advance directives (ADs). Methods: We studied 2,159 West Virginians with ADs and/or POLST forms in the West Virginia e-Directive Registry who died as a result of cancer between January 2011 and February 2016. Data from the Vital Registration Office (date, site, and cause of death) were merged with those from the registry (form type, completion date, and hospice admission). The primary outcome variables were out-of-hospital death (OHD) and hospice admission. Results: The percentage of patients with OHD was 85.7% for patients with POLST forms compared with 72.0% for those with ADs ( P < .001). The odds of OHD for patients with POLST forms were 2.33 times those of patients with ADs. The percentage of patients admitted to hospice was 49.9% for those with POLST forms compared with 27.0% for those with ADs ( P < .001). The odds of being admitted to hospice for patients with POLST forms were 2.69 times those of patients with ADs. Conclusion: Advance care planning with completion of POLST forms compared with ADs in patients with advanced cancer was associated with two quality end-of-life care metrics: OHD and hospice admission. Our study suggests that goals-of-care discussions including POLST form completion may improve end-of-life care for patients with advanced cancer.


2021 ◽  
Author(s):  
Prasanna Ananth ◽  
Sophia Mun ◽  
Noora Reffat ◽  
Soo Jung Kang ◽  
Sarah Pitafi ◽  
...  

PURPOSE: There are no existing quality measures (QMs) to optimize end-of-life care for children with cancer. Previously, we developed a set of 26 candidate QMs. Our primary objective in this study was to achieve stakeholder consensus on priority measures. METHODS: We conducted an iterative, cross-sectional electronic survey, using a modified Delphi method to build consensus among clinician and family stakeholders. In each of the two rounds of surveys, stakeholders were asked to rate QMs on a 9-point Likert scale, on the basis of perceived importance. Health care professionals were additionally asked to rate measures on perceived feasibility. After each round, we computed median scores on importance and feasibility of measurement, retaining QMs with median importance scores ≥ 8. RESULTS: Twenty-five participants completed both rounds of the survey. In round 1, participants were asked to rate 26 QMs; nine QMs, including QMs pertaining to health care use, were removed because of median importance scores < 8. Two new measures were proposed for consideration in round 2, on the basis of participant feedback. Following round 2, 17 QMs were ultimately retained. QMs related to symptom screening and palliative care consultation were rated highly in importance and feasibility. QMs related to communication were rated highly important, yet less feasible. Measuring whether a patient's needs were heard by their health care team was rated among the least feasible. CONCLUSION: Childhood cancer stakeholders prioritized QMs pertaining to patient-reported outcomes, deeming measures of health care resource use less important. Future research should seek to develop novel tools for quality assessment to enhance feasibility of implementing priority measures.


2018 ◽  
Vol 15 (4) ◽  
Author(s):  
Mark R. Litzow ◽  
Thomas W. LeBlanc

2021 ◽  
pp. 082585972110365
Author(s):  
Serdar Ceylan ◽  
Merve Guner Oytun ◽  
Arzu Okyar Bas ◽  
Zeynep Kahyaoglu ◽  
Burcu B. Dogu ◽  
...  

Background End-of-life care has become an important public health issue in recent years. Place of death is a major component of end-of-life care. Despite attempts to improve end-of-life care, there has not been published any data about place of deaths in Turkey. Aim: This retrospective, cross-sectional study investigates the place of death and trends over the years in geriatric age groups in Turkey. Methods: Patients who were admitted to geriatric outpatient clinic of a university hospital during a 7-year period were included. Place and date of death information were received from the death notification system and recorded as hospital or out-of-hospital death. Demographic and clinical data were collected from the hospital information system. Deaths occurring after March 1, 2020 were not included to eliminate the effect of coronavirus disease-2019 pandemic. Results: A total of 4025 (20.7%) patients were determined to be dead. Approximately three-quarters of deaths (73.0%) occurred in hospital. The number of deaths reported from nursing homes was only 13 (3.0%). Patients with dementia less frequently died in hospital, however, it was not statistically significant (12.4% vs 14.7%, P = .05). The prevalence of death in hospital was significantly higher in patients with chronic renal failure (3.1% vs 1.7%, P = .02). The presence of comorbid conditions such as heart failure, cerebrovascular disease, Parkinson's disease, chronic obstructive pulmonary disease/asthma, and cancer did not affect the place of death ( P = .24, .21, .24, .51, and .18). Out-of-hospital mortality increased with advanced age ( P < .001). No significant difference was found in the place of death over the years ( P = .41). Conclusion: To the best of our knowledge, this is the first study examining the place of death in Turkey, an aging country. Our results may help to establish policies about end-of-life care in elderly people to improve quality of life by using resources effectively.


Author(s):  
S Kite ◽  
A Cracknell ◽  
A Hurlow ◽  
C Iwaniszak ◽  
C Pattison ◽  
...  

2020 ◽  
Vol 16 (7) ◽  
pp. e590-e600
Author(s):  
Lindsey A. Herrel ◽  
Ziwei Zhu ◽  
Jennifer J. Griggs ◽  
Deborah R. Kaye ◽  
James M. Dupree ◽  
...  

PURPOSE: To determine whether the type of delivery system is associated with intensity of care at the end of life for Medicare beneficiaries with cancer. PATIENTS AND METHODS: We used SEER registry data linked with Medicare claims to evaluate intensity of end-of-life care for patients who died of one of ten common cancers diagnosed from 2009 through 2014. Patients were categorized as receiving the majority of their care in an integrated delivery system, designated cancer center, health system that was both integrated and a certified cancer center, or health system that was neither. We evaluated adherence to seven nationally endorsed end-of-life quality measures using generalized linear models across four delivery system types. RESULTS: Among 100,549 beneficiaries who died of cancer during the study interval, we identified only modest differences in intensity of end-of-life care across delivery system structures. Health systems with no cancer center or integrated affiliation demonstrated higher proportions of patients with multiple hospitalizations in the last 30 days of life (11.3%), death in an acute care setting (25.9%), and lack of hospice use in the last year of life (31.6%; all P < .001). Patients enrolled in hospice had lower intensity care across multiple end-of-life quality measures. CONCLUSION: Intensity of care at the end of life for patients with cancer was higher at delivery systems with no integration or cancer focus. Maximal supportive care delivered through hospice may be one avenue to reduce high-intensity care at the end of life and may impact quality of care for patients dying from cancer.


2018 ◽  
Vol 5 (1) ◽  
pp. 1483097
Author(s):  
Kayo Hirooka ◽  
Miharu Nakanishi ◽  
Hiroki Fukahori ◽  
Atsushi Nishida ◽  
Selena Gray

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