Lactation Support as a Proxy Measure of Family-Centered Care Quality in Neonates with Life-Limiting Conditions-A Comparative Study
article; cohort analysis; controlled study; female; hospital admission; human; major clinical study; male; retrospective study; cerebral palsy; gestational age; comparative study; hospital discharge; congenital heart disease; genetic disorder; seizure; neurologic disease; lung disease; neonatal intensive care unit; clinical assessment; mortality; infant; kidney disease; extracorporeal oxygenation; health disparity; cognitive defect; length of stay; gastrointestinal disease; do not resuscitate order; breast feeding; hypoxic ischemic encephalopathy; family centered care; sensory dysfunction; incurable disease; lactation; life limiting condition; breast pump; donor milk; learning disorder; nutritional deficiency
Lactation support is an important measure of Family-Centered Care (FCC) in the Neonatal Intensive Care Unit (NICU). Life-limiting conditions (LLCs) raise complex ethical care issues for providers and parents in the NICU and represent a key and often overlooked population for whom FCC is particularly important. We investigated healthcare disparities in FCC lactation support quality in infants with LLCs. Methods: A retrospective cohort of inborn infants with or without LLCs admitted to the NICU between 2015-2023 included 395 infants with 219 LLC infants and 176 matched non-LLC infants and were compared on LLC supports. Results: The LLC cohort experienced greater skin-to-skin support, but less lactation specialist visits, breast pumps provided, and human milk oral care use. LLC infants also experienced less maternal visitation, use of donor milk (LLC: 15.5%, non-LLC: 33.5%), and breastfeeds (LLC: 24.2%, non-LLC: 43.2%), with lower mean human milk provision (LLC: 36.6%, non-LLC: 67.1%). LLC infants who survived to discharge had similar human milk use as non-LLC infants (LLC: 49.8%, non-LLC: 50.6%). Conclusion: Lactation support was significantly absent for families and infants who presented with LLCs in the NICU, suggesting that policies can be altered to increase lactation support FCC quality for this population.
Brito S; Williams A; Fox J; Mohammed T; Chahin N; McCarthy K; Nubayaat L; Nunlist S; Brannon M; Xu J; Hendricks-Munoz KD
Children
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children10101635" target="_blank" rel="noreferrer noopener">10.3390/children10101635</a>
Impact of Palliative Care Integration on End-of-Life Outcomes in Pediatric Hematopoietic Cell Transplant
hematopoietic cell; palliative therapy; transplantation; anxiety; appetite; bleeding; bodily secretions; child; conference abstract; controlled study; coughing; data analysis; demographics; diarrhea; distress syndrome; do not resuscitate order; documentation; dyspnea; edema; fatigue; female; fever; hospice; human; human cell; intubation; irritability; lifespan; major clinical study; male; medical record review; nausea and vomiting; pain; Palliative Care; quality of life; retrospective study; surgery; survival; terminal care
Introduction: Pediatric hematopoietic cell transplant (HCT) confers a high risk of morbidity and mortality and palliative care (PC) integration in HCT may improve outcomes. PC services can aid in advanced care planning, symptom management, and wholistic support for patients and their families, especially at end-of-life, yet little empiric data exists regarding the impact of PC involvement in pediatric HCT. Objective(s): Compare deceased pediatric HCT patients with and without PC involvement to identify differences in end-of-life characteristics. Method(s): Retrospective medical record review was performed for all HCT patients at St. Jude Children's Research Hospital who died between March 2008 and October 2017 (N=160). Variables collected included: demographics, PC involvement, symptom and end-of-life characteristics. Data analysis included descriptive statistics and tests of significance. Result(s): Of 160 deceased HCT patients PC involvement was present in 115 (71.9%) compared to 45 (28.1%) with no PC. No significant differences in demographic characteristics were noted between the 2 groups. Longer survival duration from HCT to death was noted in patients who received PC whose mean death was 305.5 days after HCT (median 189, range 10-2,834) as compared to a mean of 228.8 days between HCT and death in the no PC group (median 129, range 13-1,444) (p=0.047). Significant differenced were noted in which patients with PC involvement were more likely to have a DNR order (PC n=76 74.5%, NPC n=16 48.5% p=.005), less likely to be intubated in the last 24 hours of life (PC n=36 34%, NPC n=21 60% p=.006), and more likely to have been enrolled in hospice (PC n=38 33%, NPC n=4 8.9% p=.002). Documentation of distressing symptoms in the last month of life was higher in the PC group with notable symptom burden in both groups. Most frequently documented symptoms overall were pain (95.3%), fatigue (83.2%), fever (80.0%), edema (78.0%), bleeding (66.9%), diarrhea (65.6%), poor appetite (65.3%), anxiety (63.4%), nausea/ vomiting (58.9%), dyspnea (58.5%), secretions (57.4%), irritability (48.0%), and cough (47.5%). Conclusion(s): PC integration in pediatric HCT likely results in improved end-of-life care by way of enhanced advanced care planning, decreased intubation and resuscitative events, and increased hospice enrollment. PC integration in HCT does not lead to shorter life spans and may improve quality of life via enhanced symptom recognition and management.Copyright © 2023 American Society for Transplantation and Cellular Therapy
Levine DR; Cuviello A; Baker JN
Transplantation and Cellular Therapy
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/S2666-6367%2823%2900237-3" target="_blank" rel="noreferrer noopener">10.1016/S2666-6367%2823%2900237-3</a>
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
Prozora S; Shabanova V; Massaro S; Davidoff A
Pediatric Blood and Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Improving pediatric palliative care in a community-based setting through an ongoing education series
administrative personnel; checklist; child; clergy; comfort; community hospital; conference abstract; conversation; do not resuscitate order; dying; education; female; hospice care; human; Likert scale; major clinical study; male; needs assessment; nurse; palliative therapy; pharmacist; simulation; social worker; Texas
Background: Community hospitals represent a unique setting to provide pediatric palliative care (PPC), given their usual proximity to a patient's home. Texas Children's Hospital, TheWoodlands (TCH-TW) is a community-based campus that opened in April 2017. Hospital staff have varying experience in PPC and are unfamiliar with available resources. Absence of focused training on PPC and relative paucity of exposure to PPC necessitates an urgent need for improvement. Objective(s): 1. To understand baseline comfort of TCH-TW staff members in delivering PPC in a community-based setting and identify areas of improvement and knowledge gaps. 2. To pilot a campus wide ongoing education series that improves overall comfort and knowledge of TCH-TW staff members in delivering PPC in a community-based setting. Design/Method: An electronic survey (using a 5 point Likert scale) was sent to 350 staff members including physicians, mild-level providers, nurses, social workers, child life specialists, chaplains, pharmacists, and administrators to conduct a needs assessment. Results were analyzed to design a quarterly education series, utilizing didactic presentations, simulations, and small group discussions. Feedback tools included pre- and post-assessment questions, audience response system, and competency checklists. Result(s): One-hundred forty three participants (40%) completed the survey. Staff members reported an average score ~3.16 when asked if they felt the campus was 'palliative care friendly.' They reported a comfort level ~2.90 with regards to having end-of-life discussions with patients and their families, and a rating ~2.33 when it came to placing 'do-not-resuscitate' orders. An average comfort level ~3.28 was reported when caring for an actively dying patient and acute symptom management. Additional areas of improvement included understanding essential differences between palliative, concurrent, and hospice care (average score~3.39), as well as logistics and information accessibility to identify PPC resources within the campus (average score ~2.85 and ~2.93, respectively). The inaugural lecture- 'Hospice 101: Providing Palliative Care in the Community Hospital Setting: An Interprofessional Approach-' was launched in October 2018, with 37 participants reporting an overall activity quality score ~4.53. Additional lectures planned over the academic year include: having difficult conversations; logistics of when a patient dies at TCH-TW; and management of an actively dying patient. Conclusion(s): Community hospitals have a unique opportunity to provide PPC services due their closer proximity to a patient's own home. Through an ongoing campus wide educational series initiative, we aim to provide a high-quality palliative care experience that better serves our patient population.
Moonat H; Nguyen L
Pediatric Blood and Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Pediatric Blood and Cancer
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Journal of Pediatrics
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</a>
Differences in Advance Care Planning and Circumstances of Death for Pediatric Patients Who Do and Do Not Receive Palliative Care Consults: A Single-Center Retrospective Review of All Pediatric Deaths from 2012 to 2016
article; child; female; human; major clinical study; male; controlled study; hospice; medical record review; do not resuscitate order; palliative therapy; advance care planning; life sustaining treatment; pediatric patient; physician; retrospective study; time of death; statistics; tertiary care center
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.
Harmoney K; Mobley EM; Gilbertson-White S; Brogden NK; Benson RJ
Journal of Palliative Medicine
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1089/jpm.2019.0111" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0111</a>
The aggressive end-of-life care in pediatric cancer patients in taiwan
death; major clinical study; retrospective study; intubation; school child; cancer patient; cancer chemotherapy; conference abstract; medical record review; human; child; female; male; controlled study; diagnosis; hospice care; intensive care unit; do not resuscitate order; Taiwan; patent
Background/Objectives: Despite the dramatically improved outcomes for pediatric cancer patients, cancer is the leading cause of death in Taiwan, accounting for 21.8% of death in 2014. The pediatric end-of-life (EOF) care has not been extensively explored in the pediatric cancer patients. The study was to evaluate the trends in pediatric cancer EOF care in a medical center from 2008-2016 in Taiwan. Design/Methods: A retrospective chart review was conducted. All participants were diagnosed with cancer, and died between 2008 and 2016 in the southern medical center in Taiwan. 74 participants were included. Results: The average age at diagnosis, and death were 7.6+/-5.3 year olds, and 11.3+/-6.1 year olds, respectively. These patients in their last month of life spent greater than 14 days (79.1%) in the hospital, completed Do-Not-Resuscitate (DNR) (79.7%), dying in the intensive care unit (70.3%), received related chemotherapy (63.5%), underwent intubation (39.2%), or received cardiopulmonary resuscitation (5.4%). Only 35.1% patents received hospice care or hospice share-care in their last month of life, of these patents 25 % stared such service within the last 3 days. The care of the pediatric cancer EOF did not change over the study period except for significantly increasing DNR permits, and related chemotherapy in the last month of life. Conclusions: Overly aggressive treatment was reported in the last month of pediatric cancer patients in Taiwan. A quality of EOF care in pediatric cancer patients should be developed to meet the individuals and family's needs and preferences.
Wu LM
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Advance care planning for adolescent patients with life-threatening neurological conditions: A survey of Japanese paediatric neurologists
Advance care planning;neurologic disease;neurologist;pediatrician;Adult;article;artificial ventilation;cross-sectional study;do not resuscitate order;Family;Female;health care survey;hematologist;Human;Japan;living will;Male;Middle Aged;priority journal;prognosis;terminal care
Objective To evaluate current attitudes and barriers to advance care planning for adolescent patients with life-threatening conditions among paediatric neurologists. Design Cross-sectional study. A self-reported questionnaire was administered to assess the practice of advance care planning, advance directives and barriers to advance care planning for adolescent patients with life-threatening conditions. All board-certified paediatric neurologists in Japan were surveyed and those who had experience in taking care of adolescent patients with decision-making capacity were analysed. We compared the results with those of paediatric haematologists reported previously. results In total, 186 paediatric neurologists were analysed. If the patient's prognosis was <3 months, only about 30% of paediatric neurologists reported having discussions with patients, such as 'do not attempt resuscitation' orders (28%) and ventilator use (32%), whereas more than 70% did discuss these topics with patients' families. About half of the paediatric neurologists did not discuss advance directives at the end of life with their patients, whereas over 75% did discuss advance directives with patients' families. Compared with paediatric haematologists, paediatric neurologists had more end-of-life discussions with patients, such as where treatment and care will take place, do not attempt resuscitation orders, and the use of a ventilator, if the patient's prognosis was >>1 year. conclusion About half or less of the paediatric neurologists discussed advance care planning and advance directives with their adolescent patients who had life-threatening conditions, even if the patient's prognosis was <3 months. They tended to discuss advance care planning and advance directives more with families than with patients themselves.
Yotani N;Kizawa Y;Shintaku H
BMJ Paediatrics Open
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjpo-2017-000102" target="_blank" rel="noreferrer noopener">10.1136/bmjpo-2017-000102</a>