Racial Inequities in Palliative Referral for Children with High-Intensity Neurologic Impairment
Child; child; adult; article; cohort analysis; controlled study; female; human; major clinical study; male; retrospective study; chronic disease; Socioeconomic Factors; gestational age; Referral and Consultation; ethnicity; Only Child; patient referral; tertiary care center; morbidity; mortality; neurologic examination; multidisciplinary team; Hispanic; medicaid; racism; primary medical care; special situation for pharmacovigilance; racial disparity; economic inequality
Objective: To evaluate whether racial and socioeconomic inequities in pediatric palliative care utilization extend to children with high-intensity neurologic impairment (HI-NI), which is a chronic neurological diagnosis resulting in substantial functional morbidity and mortality. Study design: We conducted a retrospective study of patients with HI-NI who received primary care services at a tertiary care center from 2014 through 2019. HI-NI diagnoses that warranted a palliative care referral were identified by consensus of a multidisciplinary team. The outcome was referral to palliative care. The primary exposure was race, categorized as Black or non-Black to represent the impact of anti-Black racism. Additional exposures included ethnicity (Hispanic/non-Hispanic) and insurance status (Medicaid/non-Medicaid). Descriptive statistics, bivariate analyses, and multivariable logistic regression models were performed to assess associations between exposures and palliative care referral. Results: A total of 801 patients with HI-NI were included; 7.5% received a palliative referral. There were no differences in gestational age, sex, or ethnicity between patients who received a referral and those who did not. In multivariable analysis, adjusting for ethnicity, sex, gestational age, and presence of complex chronic conditions, Black children (aOR 0.47, 95% CI 0.26, 0.84) and children with Medicaid insurance (aOR 0.40, 95% CI 0.23, 0.70) each had significantly lower odds of palliative referral compared with their non-Black and non-Medicaid-insured peers, respectively. Conclusions: We identified inequities in pediatric palliative care referral among children with HI-NI by race and insurance status. Future work is needed to develop interventions, with families, aimed at promoting more equitable, antiracist systems of palliative care.
Jones MN; Simpson SL; Beck AF; Cortezzo DE; Thienprayoon R; Corley AMS; Thomson J
Journal of Pediatrics
2024
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.2024.113930" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2024.113930</a>
Impact of an outpatient palliative care consultation and symptom clusters in terminal patients at a tertiary care center in Pakistan
Humans; Female; Male; Palliative Care; Infant; Quality of Life; Syndrome; Tertiary Care Centers; Outpatients; Palliative Care; Referral and Consultation; Neoplasms/th [Therapy]; Symptom Assessment; Neoplasms; Neoplasms/co [Complications]; Neoplasms/ep [Epidemiology]; Pakistan
Background: Patients with terminal diseases may benefit physically and psychosocially from an outpatient palliative care visit. Palliative care services are limited in Pakistan. An improved understanding of the symptom clusters present in our population is needed. The first outpatient palliative care center in Karachi, Pakistan, was established at our tertiary care institution. The primary aim of this study was to evaluate the impact of a palliative care outpatient consultation on symptom burden in patients with a terminal diagnosis. The secondary aim was to analyze the symptom clusters present in our population. Methods: Patients with a terminal diagnosis referred to our outpatient palliative department between August 2020-August 2022 were enrolled. The Edmonton Symptom Assessment Scale (ESAS) questionnaire was administered at the initial visit and the first follow-up visit at one month. Change in symptom burden was assessed using a Wilcoxon signed ranks test. A principal component analysis with varimax rotation was performed on the symptoms reported at the initial visit to evaluate symptom clusters. The palliative performance scale (PPS) was used to measure the performance status of palliative care patients. Results: Among the 78 patients included in this study, the average age was 59 ± 16.6 years, 52.6% were males, 99% patients had an oncological diagnosis, and the median duration between two visits was 14 (Q1-Q3: (7.0, 21.0) days. The median PPS level was 60% (Q1-Q3: 50-70). Overall, ESAS scores decreased between the two visits (6.0 (2.8, 11.0), p < 0.001) with statistically significant improvement in pain (5.0 vs. 2.5, p < 0.001), loss of appetite (5.0 vs. 4.0, p = 0.004), depression (2.0 vs. 0.0, p < 0.001), and anxiety (1.5 vs. 0.0, p = 0.032). Based on symptoms at the initial visit, 3 clusters were present in our population. Cluster 1 included anxiety, depression, and wellbeing; cluster 2 included nausea, loss of appetite, tiredness, and shortness of breath; and cluster 3 included drowsiness. Conclusion: An outpatient palliative care visit significantly improved symptom burden in patients with a terminal diagnosis. Patients may benefit from further development of outpatient palliative care facilities to improve the quality of life in terminally ill patients.
Rafaqat W; Syed AR; Ahmed IM; Hashmi S; Jabeen I; Rajwani S; Qamar U; Waqar MA
BMC Palliative Care
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/10.1186/s12904-023-01195-4" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01195-4</a>
Allowing Relationships to Unfold: Consult Reason and Topics Discussed in Initial and Subsequent Palliative Care Visits Among Children Who Died From Relapsed/Refractory Cancer
palliative care; Palliative Care; Recurrence; Referral and Consultation; end-of-life; pediatric oncology
Background: Children with relapsed/refractory cancer have a myriad of palliative care needs. While pediatric oncology clinicians meet many of these needs, studies suggest that these children often have distressing symptoms and that families feel unprepared for their child's end-of-life (EOL). Oncology clinicians cite barriers to pediatric palliative care (PPC) consultation, including concerns that PPC teams will upset families with EOL discussions. This study evaluated topics addressed by PPC teams over the course of their relationship with children who died from cancer. Methods: Retrospective chart review of children who were diagnosed with relapsed/refractory cancer, received PPC consultation at an academic children's hospital, and died between January 2008 and January 2017. Information was extracted regarding the child's treatment, EOL care, and the content of PPC consultation over the course of the team's relationship with the child/family. Results: Fifty-six children were included in the analysis. The most frequent reasons for the initial consult were pain (n = 31, 55%) and non-pain symptom management (n = 18, 32%). At the initial consult, the PPC team most often discussed symptom management and psychosocial support. Prognosis was not discussed in any initial consult. Over subsequent visits, the PPC team expanded their scope of discussion to include goals of care, advance care planning, and hospice. Discussion: Concerns from oncology clinicians that PPC teams will extend beyond the reasons for initial consult into prognostic/EOL discussions at the first visit may be unfounded. Greater familiarity with PPC team practices may facilitate more timely consultation of PPC and its complementary set of services.
Root MC; Koo J; Collins G; Penumarthy NL; Hermiston M; Bogetz JF
Journal of Pediatric Hematology/Oncology Nursing
2023
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<a href="http://doi.org/10.1177/27527530221140069" target="_blank" rel="noreferrer noopener">10.1177/27527530221140069</a>
Early Versus Late Outpatient Pediatric Palliative Care Consultation and Its Association With End-of-Life Outcomes in Children with Cancer
Palliative Care; pediatric palliative care; Referral and Consultation; advance care planning; end of life; childhood cancer; supportive care; pediatric oncology
Background: There is no consensus on what constitutes "early" pediatric palliative care (PPC) referral within pediatric oncology. Few studies report outcomes based on PPC timing. Objectives: Investigate associations between early (<12 weeks) or late (≥12 weeks from diagnosis) outpatient PPC consultation with demographics, advance care planning (ACP), and end-of-life (EOL) outcomes. Design: Retrospective chart and database review of demographic, disease, visit data, and PPC/EOL outcomes. Setting/Subjects: Deceased pediatric patients with cancer 0-27 years of age seen at an embedded consultative PPC clinic. Measurements: Patient demographics, disease characteristics, PPC/EOL outcomes: timing/receipt of ACP, hospice enrollment, do-not-resuscitate (DNR) documentation, hospital days in last 90 days of life, concordance between actual and preferred location of death, receipt of cardiopulmonary resuscitation (CPR) at EOL, and death in the intensive care unit. Results: Thirty-two patients received early and 118 received late PPC. Early outpatient PPC was associated with cancer type (p < 0.01). Early PPC (p = 0.04) and ACP documentation (p = 0.04) were associated with documentation of preferred location of death. Early PPC was associated with a preference for home death (p = 0.02). Timing of outpatient PPC was not associated with ACP documentation or other EOL outcomes. In the entire cohort, 73% of PPC patients received hospice, 74% had a DNR order, 87% did not receive CPR at EOL, and 90% died in their preferred location. Conclusions: When using a cutoff of 12 weeks from diagnosis, outpatient PPC timing was only associated with location of death metrics, likely due to high-quality PPC and EOL care among all patients.
Lee A; DeGroote NP; Brock KE
Journal of Palliative Medicine
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/10.1089/jpm.2023.0063" target="_blank" rel="noreferrer noopener">10.1089/jpm.2023.0063</a>
Consultation patterns before and after embedding pediatric palliative care into a pediatric hematology/oncology clinic
child; Palliative Care; article; controlled study; female; human; male; retrospective study; outpatient; palliative therapy; Referral and Consultation; Hematology; clinical article; consultation; medical record review; solid tumor; rank sum test; hematology; cancer model; health care delivery; embedding
Introduction: Palliative care is a critical component of pediatric oncology care. Embedded pediatric palliative care (PPC) is relatively new in pediatric hematology/oncology (PHO) and may improve access, utilization, and quality of PPC. In June 2020, the Mayo Clinic PPC service transitioned from an afternoon, physically independent clinic to an all-day clinic embedded within PHO. Method(s): Retrospective chart review was used to quantify consultation rates from PHO to PPC in 12-month study periods before and after establishment of an embedded clinic. Changes in descriptive statistics and consult patterns were calculated. Study periods were compared using either chi-square or Fisher's exact tests for categorical variables and Wilcox rank sum tests for continuous variables. Result(s): There was an 89% increase in consultations from PHO to PPC after initiation of an embedded clinic (n = 20 vs. n = 38 per 12 months). The absolute number of completed outpatient consults increased from three (15% of visits) pre-embedment to fourteen (37%) post-embedment (p =.082). The median number of days from first oncology visit to PPC assessment was unchanged after embedment (36 vs. 47 days, p =.98). Consults for solid tumors increased from 22% (n = 4) pre-embedment to 60% (n = 18) post-embedment (p <.05). Consults for symptom management increased from 60% (n = 12) to 87% (n = 33) (p <.05). Conclusion(s): Embedment of PPC into a PHO workspace was associated with an increased number of total consults, outpatient consults, solid tumor consults, and consults for symptom management. Our "partial-PPO" model allowed for provision of PPC in the outpatient oncology setting in a clinic where there is not enough volume to support a full-time oncology-focused clinician team.Copyright © 2023 Wiley Periodicals LLC.
Greenmyer JR; Ngo T; Smith M; Collura C; Schiltz B; McCarthy SR
Pediatric Blood and Cancer
2023
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<a href="http://doi.org/10.1002/pbc.30663" target="_blank" rel="noreferrer noopener">10.1002/pbc.30663</a>
Consulting parents bereaved by childhood cancer: A qualitative study to improve bereavement services
Parents; Bereavement; Communication; Interviews; Referral and Consultation; Qualitative Studies; Empathy; Human; Thematic Analysis; Childhood Neoplasms; Patient Care; Psychosocial Factors
Twelve Australian parents bereaved by childhood cancer were interviewed
Loxton I; Oxlad M; Perry A
Death Studies
2023
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<a href="http://doi.org/10.1080/07481187.2022.2142325" target="_blank" rel="noreferrer noopener">10.1080/07481187.2022.2142325</a>
External second opinions: building trust between health professionals and families
Paediatrics; Referral and Consultation; Intensive Care Units, Paediatric
In medicine, external second opinions are frequently sought to inform decisions around a patient's proposed course of treatment. However, they are also sought in more challenging circumstances such as when disagreement arises between the healthcare team and the family, or during complex end-of-life discussions in critically ill children. When done well, external second opinions can help build trust and reduce conflict. However, when done poorly they may antagonise relationships and thwart attempts to bring about consensus. While principles of good medical practice should always be followed, the actual second opinion process itself remains essentially unregulated in all its forms. In this review, we set out what a standardised and transparent second opinion process should look like and recommend key recommendations for healthcare Trusts, Commissioners and professional bodies to support good practice.
Fraser J; Goold I; Akindolie O; Linney M
Archives of Disease in Childhood
2023
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<a href="http://doi.org/10.1136/archdischild-2023-325481" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325481</a>
Facilitators and barriers perceptions to early referral to pediatric palliative care perceived
child; Palliative Care; adult; article; controlled study; female; human; major clinical study; male; palliative therapy; Referral and Consultation; patient referral; pediatrician; clinical practice; multicenter study; religion; perception; demography; professional practice
Objectives: The goal of this study was to assess pediatric oncology providers' perceptions of palliative care in order to validate previously identified barriers and facilitators to early integration of a pediatric palliative care team (PCT) in the care of children with cancer. Methods: A 36-question survey based on preliminary, single-institution data was electronically distributed to pediatric oncology physicians, nurse practitioners, nurses, and social workers nationally. The principal outcomes measured included perceived barriers and facilitators to early integration of pediatric palliative care. Data were analyzed using Rv3.1.2 statistical software. Results: Most respondents agreed that the PCT does not negatively impact the role of the oncologist; however, there were concerns that optimal patient care may be limited by pediatric oncologists' need to control all aspects of patient care (P < 0.001). Furthermore, oncologists, more than any provider group, identified that the emotional relationship they form with the patients and families they care for, influences what treatment options are offered and how these options are conveyed (P < 0.01). Education and evidence-based research remain important to all providers. Respondents reached consensus that early integration of a PCT would provide more potential benefits than risks and most would not limit access to palliative care based on prognosis. Conclusions: Overall, providers endorse early integration of the PCT for children with cancer. There remains a continued emphasis on provider and patient education. Palliative care is generally accepted as providing a benefit to children with cancer, though barriers persist and vary among provider groups.
Ceballos-Yanez D; Patricio AP; Eugenin-Soto MI
Andes Pediatrica
2023
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<a href="http://doi.org/10.32641/andespediatr.v94i3.4382" target="_blank" rel="noreferrer noopener">10.32641/andespediatr.v94i3.4382</a>
Role of palliative care in fetal neurological consultations: Guiding through uncertainty and hope
Palliative Care; diagnosis; human; patient care; palliative therapy; neurology; grief; Referral and Consultation; review; consultation; fetus; shared decision making; infant; decision making; medical care; uncertainty; prenatal period; vignette; social belief; brain; counseling; encephalocele; pregnancy; prognosis
Fetal neurology is a rapidly evolving and expanding field. Discussions about diagnosis, prognosis, treatment options, and goals of care often begin in the antenatal period. However, there are inherent challenges to fetal counseling of neurological diagnoses due to limitations of fetal imaging, prognostic uncertainty, and variability in neurodevelopmental outcomes. In the midst of uncertainty, families are challenged with preparing a care plan for their baby while simultaneously experiencing profound grief. The paradigms of perinatal palliative care can assist with the grieving process and help frame diagnostic testing and complex decision-making within the context of a family's spiritual, cultural, and social belief system. This ultimately leads to a shared decision-making process and value driven medical care. While perinatal palliative care programs have expanded, many families faced with such diagnoses never meet with a palliative care team prior to delivery. Moreover, there is significant variability in the availability of palliative care services throughout the country. Using an illustrative vignette of a patient with a prenatally diagnosed encephalocele, this review aims to provide a basic framework of perinatal palliative care for fetal neurology diagnoses that emphasizes 1) importance of clear, consistent, and transparent communication among all subspecialists and families, 2) creation of a palliative care birth plan, 3) importance of consistent care providers and longitudinal points of contact prenatally and post-delivery, 4) close communication between the prenatal and post-natal providers to allow for optimal continuity of care, and 5) recognize that information, care plans, and goals of care often evolve over time.
Cortezzo DE; Vawter-Lee M; Shoaib A; Venkatesan C
Frontiers in Pediatrics
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/10.3389/fped.2023.1205543" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1205543</a>
Palliative care referral criteria and application in pediatric illness care: A scoping review
Palliative Care; palliative care; Pediatrics; chronic disease; Referral and Consultation; systematic review; palliative medicine; referral and consultation
BACKGROUND: Specialty pediatric palliative care services can help to address unmet care needs for children with complex and serious illness. Current guidelines support the identification of unmet palliative care needs; however, it is unknown how these guidelines or other clinical characteristics influence pediatric palliative care referral in research and practice. AIM: To evaluate the identification and application of palliative care referral criteria in pediatric illness care and research. DESIGN: A scoping review with a content analysis approach to summarize results. DATA SOURCES: Five electronic databases (PubMed, CINAHL, PsycINFO, SCOPUS, and Academic Search Premier) were used to identify peer-reviewed literature published in English between January 2010 and September 2021. RESULTS: We included 37 articles focused on the referral of pediatric patients to palliative care teams. The identified categories of referral criteria were: disease-related; symptom-related; treatment communication; psychosocial, emotional, and spiritual support; acute care needs; end-of-life care needs; care management needs; and self-referrals for pediatric palliative care services. We identified two validated instruments to facilitate palliative care referral and seven articles which described population-specific interventions to improve palliative care access. Nineteen articles implemented a retrospective health record review approach that consistently identified palliative care needs with varying rates of service use. CONCLUSIONS: The literature demonstrates inconsistent methods for identifying and referring children and adolescents with unmet palliative care needs. Prospective cohort studies and clinical trials would inform more consistent pediatric palliative care referral practices. More research is needed on palliative care referral and outcomes in community-focused pediatrics.
Bernier Carney KM; Goodrich G; Lao A; Tan Z; Kiza AH; Cong X; Hinderer KA
Palliative Medicine
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="https://journals.sagepub.com/doi/10.1177/02692163231163258">10.1177/02692163231163258</a>
Pediatric Palliative Care Referral Criteria Following Moderate or Severe Traumatic Brain Injuries
Palliative Care; child; palliative care; Referral and Consultation; Brain Injuries; Brain; adolescent; goals of care; traumatic brain injury
Introduction/Aims: Traumatic brain injuries (TBIs) are one of the leading causes of death and disability in children and adolescents. A significant number of those who survive suffer from the lasting cognitive, physical, or behavioral effects of TBI while the loss is devastating for families. The aim of the study is to characterize the pediatric population and formulate referral criteria for palliative care (PC) consults who would guide the most beneficial allocation of resources. Methods: This is an IRB-approved retrospective chart review study from January 1, 2017, to October 1, 2021, of persons presenting to the emergency department of a 467-bed quaternary pediatric hospital in the midwest with a moderate or severe TBI (ICD-10: S.06.2X and S.06.5X9A). Participants were excluded if they were admitted directly from an outside hospital or if the diagnosis code did not meet criteria. Results: N_=_33 patients presented with moderate or severe TBI, of which 17 had PC consult. There were no significant between-group demographic differences. Significant differences in clinical and outcome variables formed the basis of proposed referral criteria for specialist PC for children and adolescents sustaining a moderate-to-severe traumatic brain injury. Discussion: PC programs are a finite resource and should be available to and focused on those with greatest need. The proposed criteria provide empirically based guidance on when to consult, or consider consulting, specialist pediatric PC. Further testing of these criteria and their relationship with improved outcomes are desirable.
Villarosa R; Grossoehme DH; Brown M; Delahanty S; Richner G; Baird M; Friebert S
Journal of Palliative Medicine
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="https://www.liebertpub.com/doi/abs/10.1089/jpm.2022.0515"><span>10.1089/jpm.2022.0515</span></a>
Timing of palliative consultation for children during a fatal illness
childhood disease; palliative therapy; African American; article; cardiovascular disease; Caucasian; Child; cohort analysis; female; human; insurance; length of stay; major clinical study; male; Only Child; outcome assessment; private health insurance; Referral and Consultation; retrospective study
Abstract Background: The American Academy of Pediatrics recommends palliative care for children at the diagnosis of serious illness. Yet few children who die receive specialty palliative care consultation, and when it is provided, palliative care consultation tends to occur after >75% of the time from diagnosis until death. Focusing on the timing of palliative consultation in relation to the date of diagnosis, we evaluated factors predicting earlier receipt of pediatric palliative care in a cohort of decedents. Methods: We retrospectively identified patients diagnosed with a life-limiting disease who died at our hospital in 2015-2017 after at least 1 inpatient palliative medicine consultation. Our primary outcome was time from palliative-qualifying diagnosis to earliest receipt of specialty palliative care. A survival analysis was used to describe factors associated with earlier receipt of palliative care. Results: The analysis included 180 patients (median age at diagnosis <1 month [interquartile range (IQR): 0-77]). The median time to first palliative consultation was 7 days after diagnosis (IQR: 2-63), compared with a median of 50 days between diagnosis and death (IQR: 7-210). On the multivariable analysis, palliative consultation occurred earlier for patients who had cardiovascular diagnoses, had private insurance, and were of African American race. Conclusions: In a cohort of decedents at our institution, palliative consultation occurred much earlier than has been previously reported. We also identify factors associated with delayed receipt of palliative care among children who are dying that reveal further opportunities to improve access to specialty palliative care.
Rossfeld ZM; Miller R; Fosselman DD; Ketner AR; Tumin D; Tobias JD; Humphrey L
Hospital Pediatrics
2019
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<a href="http://doi.org/10.1542/hpeds.2018-0169" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2018-0169</a>
Relationship Between Palliative Care Consults and Outcomes of Pediatric Surgical Patients During Terminal Admissions
Palliative Care; palliative care; pediatrics; terminal care; Referral and Consultation; end of life; surgery
Background: Pediatric patients often undergo surgery during terminal admissions. However, the involvement and timing of palliative care consults in caring for these patients has not been readily described. Objective: To describe the presence and timing of palliative care consults for pediatric patients who undergo surgical procedures during terminal admissions. Design: Retrospective cohort study using data from the electronic health record. Setting and Participants: Pediatric patients who underwent at least one surgical procedure during a terminal admission at an urban, quaternary hospital in the United States from January 1, 2016 to December 31, 2021. Main Outcomes and Measures: Patients' medical, surgical, and admission-level characteristics were abstracted. Associations were evaluated between these characteristics and the occurrence and timing of a palliative care consult relative to surgery and death. Results: Of 134 patients, 84% received a palliative care consult during their terminal admission. Approximately 36% of consults occurred before surgery, and 12% were within one day of death. Children without a palliative care consult were more likely than children with a consult to die during surgery (19.1% vs. 2.7%, p?=?0.02), have surgery within 24 hours of death (52.4% vs. 15.9%, p?<?0.001), and undergo a full resuscitation attempt (47.6% vs. 12.4%, p?=?0.002). Receipt of a palliative care consultation did not differ by patient sex, reported race and ethnicity, language, insurance, or income level. Conclusions and Relevance: Palliative care consults support high-quality end-of-life care for children and impact perioperative outcomes, including intensity of surgical care and resuscitation in the final hours of life.
Tanious MK; Barnett N; Bisbee C; McCoy NC; Wolf BJ; Arenth J
Journal of Palliative Medicine
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/10.1089/jpm.2022.0610" target="_blank" rel="noreferrer noopener">10.1089/jpm.2022.0610</a>
From Hospital to Home: Referrals to Pediatric Hospice and Home-Based Palliative Care
Palliative Care; Hospice; Pediatrics; Hospices; Referral and Consultation; Home-Based Palliative Care
CONTEXT: Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices. OBJECTIVES: To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received. METHODS: Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC. RESULTS: Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n=34, 58.6%); descendants were more likely to have cancer (p=.002) and less likely to have a neurologic (p=.021) diagnosis. CONCLUSION: Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
Lotstein D; Klein MJ; Lindley LC; Wolfe J
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2023.02.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.02.009</a>
Utilization of a Prenatal Palliative Care Consultation Pathway for Congenital Heart Disease
Heart Defects; Congenital; Palliative Care; Child; Female; Heart Defects; Congenital Diagnosis; Heart Defects; Congenital Therapy; Human; Infant; Palliative Care; Palliative Care Psychology; Parents Psychology; Pregnancy; Referral and Consultation; Retrospective Study
Abstract
Over 4 decades, short- and long-term survival for children with congenital heart disease (CHD) has significantly increased. Those with complex CHD have a 1-year mortality rate of approximately 25%. Prenatal access to palliative care ensures a comprehensive approach to the infant's physical, emotional, spiritual, and psychosocial well-being and offers enhanced support for parents and families while providing an interprofessional approach to care. Pediatric cardiac provider attitudes, knowledge, patterns of prenatal palliative care, and consultation for fetuses with complex heart disease to guide increased and appropriate prenatal consultation were explored for a quality improvement project completed at a single institution. A retrospective cardiac database review identified that 21.5% of maternal patients seen prenatally and carrying a fetus with complex CHD would have qualified for prenatal palliative care consultation. To increase prenatal palliative care consultation, a pathway for referral was developed. A pre-evaluation of pediatric cardiac provider attitudes regarding palliative care was measured. Survey data informed the intervention phase of prenatal palliative care educational material development, which was presented to pediatric cardiac providers. The number of prenatal palliative care consults was tracked. A postintervention survey completed by pediatric cardiac providers showed increased understanding and utilization of palliative care for comfort and support and not just reserved for death preparation. Greater than 93% agreed or strongly agreed that they gained a better understanding of appropriate use of palliative/supportive care. As pediatric cardiac providers become more knowledgeable about early integration of palliative care, parents and infants will benefit greatly from referrals and initiation of palliative care at the time of prenatal diagnosis.
Mikal M; Gandhi R; Walsh SM
Journal of Hospice and Palliative Nursing
2023
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<a href="http://doi.org/10.1097/NJH.0000000000000917" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000917</a>
Why the Individual Provider Approach to Pediatric Palliative Care Consultation Exacerbates Healthcare Disparities: A Moral Argument for Standard Referral Criteria
Palliative Care; Quality of Life; Child; Healthcare Disparities; Human; Morals; Palliative Care; Referral and Consultation
Pediatric palliative care is specialized medical care for children who live with serious and life-limiting illnesses, with the central goal to improve quality of life for both children and their families. Presently, a majority of pediatric palliative care referrals are based on the traditional consultative model, in which primary providers serve as the gatekeepers to palliative care access. It is well-known that racial and ethnic healthcare disparities exist across the continuum of care, fraught with healthcare providers' biases that impact the care delivered. This includes the referral practices, allocation and utilization of palliative care services, and leaving vulnerable children and families with potentially unmet palliative care needs. We make the moral argument that the establishment of standard referral criteria for pediatric palliative care services is one simple step that must be taken to begin to address and hopefully ameliorate the impact of providers' biases and disparities that exist within pediatric palliative care.<ovid:br/><ovid:br/> Copyright 2022 The Journal of Clinical Ethics. All rights reserved.
Gouda SR; Hoehn KS
Journal of Clinical Ethics
2022
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/" target="_blank" rel="noreferrer noopener"></a>
Encouraging Family Physicians to Fill the Gaps in Hospice and Palliative Care for Children
Child; Humans; Hospices; Palliative Care; Physicians; Family; Hospice Care; Referral and Consultation
Fan JN; Kilpatrick LB
American Family Physician
2022
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/" target="_blank" rel="noreferrer noopener"></a>
Assessing the quality of deliberative stakeholder consultations involving allied health professionals in pediatric palliative care and hematology/oncology in Canada
Allied Health Personnel; Brain Neoplasms; Child; deliberative democracy; Hematology; Palliative Care; pediatric oncology; quality assessment; Referral and Consultation; stakeholder consultation
BACKGROUND: In this paper we assess the quality of six deliberative stakeholder consultations regarding the implementation of a precision diagnostic for life-threatening pediatric brain tumors. Decision makers who base policy recommendations on the outputs of consultative exercises can presuppose that all deliberants are well informed of the policy issue, that participation in the deliberative process was fair, and that overcoming implementation barriers will necessarily result in practice change. Additional evidence is therefore needed to substantiate the informational quality of the deliberation, measure the equality of participation and study the effects on stakeholder reasoning to appropriately guide uptake of proposed recommendation(s). METHODS: Using the DeVries framework for assessing the deliberative quality, we analyzed data from 44 post-consultation evaluation surveys completed by pediatric oncology and palliative care teams at two tertiary pediatric healthcare centers in Canada. We also conducted turn-taking and word-contribution analyses from the text transcriptions of each deliberation to assess equality of participation using descriptive statistics. RESULTS: Deliberants agreed the quality of the deliberative process was fair (median ratings ranging from 9-10 out of 10) and the opportunities to receive expert information and discuss with others about the implementation of a new LDT were helpful (9.5 out of 10). While the session improved understanding of the implementation barriers and opportunities, it had marginal effects on deliberants' reasoning about whether LDTs would change their own clinical practice (3-10 out of 10). Participation was proportionate in at least four of the six deliberations, where no deliberant took more than 20% of total turns and contributed equal to, or less than 20% of total words. CONCLUSION: The quality assessment we performed demonstrates high informational value and perceived fairness of two deliberative stakeholder consultations involving pediatric palliative care and oncology teams in Canada. Quality assessments can reveal how the process of deliberation unfolds, whether deliberative outputs are the result of equitable participation among deliberants and what, if any, stakeholder voices may be missing. Such assessments should be routinely reported as a condition of methodological rigor and trustworthiness of deliberative stakeholder engagement research.
Rahimzadeh V; Longo C; Gagnon J; Fernandez C; Bartlett G
BMC Palliative Care
2021
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/10.1186/s12904-021-00884-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00884-2</a>
What Do We Know about Pediatric Palliative Care Patients Consulting to the Pediatric Emergency Department?
child; emergency health service; hospitalization; palliative care; referral and consultation; retrospective studies
Objectives The objective of this study was to describe the characteristics of pediatric palliative care (PPC) patients presenting to a pediatric emergency department (ED) and these patients' ED visits. Methods This retrospective chart review was conducted from April 1, 2007, to March 31, 2012, in a tertiary care pediatric university-affiliated hospital. Eligible patients had initial PPC consultations during the study period; all ED visits by these patients were included. Data were drawn from the ED's electronic data system and patient's medical chart. Results A total of 290 new patients were followed by the PPC team, and 94 (32.4%) consulted the ED. Pediatric palliative care patients who consulted the ED had a median age of 7 years and baseline diagnoses of cancer (39.4%) or encephalopathy (27.7%). No patients died in the ED, but 36 (38.3%) died in hospital after an ED visit and 18 (19.1%) within 72 hours of admission. Pediatric palliative care patients consulted 219 times, with a median number of visits per patient of 2 (range, 1-8). They presented acutely ill as per triage scales. Reasons for consultation included respiratory distress/dyspnea (30.6%), pain (12.8%), seizure (11.4%), and fever (9.1%). Patients were often admitted to wards (61.2%) and the pediatric intensive care unit (7.3%). Two thirds (65.7%) of patients had signed an advanced care directive at the time of their visit. Discussions about goals of care occurred in 37.4% of visits. Conclusions Pediatric palliative care patients present to the ED acutely ill, often at their end of life, and goals of care are not always discussed. This is a first step toward understanding how to improve PPC patients' ED care. Copyright © Wolters Kluwer Health, Inc. All rights reserved.
Gaucher N; Humbert N; Gauvin F
Pediatric Emergency Care
2021
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/10.1097/PEC.0000000000001620" target="_blank" rel="noreferrer noopener">10.1097/PEC.0000000000001620</a>
Experiences from the first 10 years of a perinatal palliative care program: A retrospective chart review
Infant; Program Evaluation; Referral and Consultation; Terminal Care; Human; Descriptive Statistics; Perinatal Care; Prenatal Diagnosis; Retrospective Design; Record Review; Work Experiences; Gestational Age; Perinatal Death; Palliative Care -- In Infancy and Childhood; Treatment Outcomes; Neonatologists; Central Nervous System Diseases; Early Intervention; Infant High Risk
Background Perinatal palliative care is a relatively new component of paediatric palliative care which supports families who are expecting the birth of a child with a life-limiting condition. This study seeks to understand the characteristics of the infants and families referred for perinatal palliative care and the context for referrals in terms of diagnoses, referral characteristics, interventions, and outcomes. Methods A retrospective chart review of infants with prenatally diagnosed life-limiting conditions that were referred for perinatal palliative care. Results Eighty-five referrals were made for perinatal palliative care during the 10-year period, of which, 84 chose to continue with the service. Average gestational age at diagnosis was 23 weeks, and the mean time between diagnosis and referral to palliative care was 7 weeks. Stillbirths were common, occurring in 29% cases. Of livebirths, 59% of the infants survived for 2 days, and 80% died within 30 days. The most commonly referred conditions were trisomy 13 or 18 (24%), severe central nervous system malformations (20%), and severe congenital cardiac disease (16%). Referrals were most often made by neonatologists (39%), and maternal–fetal medicine specialists (36%). Discussion Our study confirms previously observed characteristics of diagnosis, referrals, and outcomes, while providing the most detailed account of lifespans for particular diagnoses to date. Our findings validate the need for perinatal palliative care, as 99% of those referred continued with the service. Future research should adopt a prospective approach to identify critical factors affecting decision making of families and physicians in the wake of a life-limiting diagnosis.
Doherty ME; Power L; Williams R; Stoppels N; Grandmaison Dumond L
Paediatrics & Child Health
2021
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<a href="http://doi.org/10.1093/pch/pxz089" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz089</a>
Paediatric health care access in community health centres is associated with survival for critically ill children who undergo inter-facility transport: A province-wide observational study
Critical care; Critical illness; Intensive care units (paediatric); Outcome assessment (health care); Referral and consultation; Resource allocation
BACKGROUND: Diverse settlement makes inter-facility transport of critically ill children a necessary part of regionalized health care. There are few studies of outcomes and health care services use of this growing population. METHODS: A retrospective study evaluated the frequency of transports, health care services use, and outcomes of all critically ill children who underwent inter-facility transport to a paediatric intensive care unit (PICU) in Ontario from 2004 to 2012. The primary outcome was PICU mortality. Secondary outcomes were 24-hour and 6-month mortality, PICU and hospital lengths of stay, and use of therapies in the PICU. RESULTS: The 4,074 inter-facility transports were for children aged median (IQR) 1.6 (0.1 to 8.3) years. The rate of transports increased from 15 to 23 per 100,000 children. There were 233 (5.7%) deaths in PICU and an additional 78 deaths (1.9%) by 6 months. Length of stay was median (IQR) 2 (1 to 5) days in PICU and 7 (3 to 14) days in the receiving hospital. Lower PICU mortality was independently associated with prior acute care contact (odds ratio [OR]=0.3, 95% confidence interval [CI]: 0.2 to 0.6) and availability of paediatric expertise at the referral hospital (OR=0.7, 95% CI: 0.5 to 1.0). CONCLUSIONS: We found that in Ontario, children undergoing inter-facility transport to PICUs are increasing in number, consume significant acute care resources, and have a high PICU mortality. Access to paediatric expertise is a potentially modifiable factor that can impact mortality and warrants further evaluation.
Tijssen J A; To T; Morrison L J; Alnaji F; MacDonald R D; Cupido C; Lee K S; Parshuram C S
Paediatrics & Child Health
2020
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<a href="http://doi.org/10.1093/pch/pxz013" target="_blank" rel="noreferrer noopener">10.1093/pch/pxz013</a>
Juggling amidst complexity' – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit
Human; Qualitative Studies; Infant; England; Attitude of Health Personnel -- Evaluation; Focus Groups; Hospice Care -- In Infancy and Childhood; Hospital Units; Infant Care; Neonatal Nursing; Palliative Care -- In Infancy and Childhood; Referral and Consultation; Thematic Analysis; Work Experiences
Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite developments evidence suggests hospice care is often not offered to parents in neonatal units (NNU). This study examines perspectives of 17 staff from 3 children's hospices regarding the challenges and opportunities caring for infants in hospice. Data was collected from 3 focus groups and analysed using a thematic approach. Findings suggest that hospice staff juggle many complex issues when caring for infants at the end-of-life. Such issues centre round the referral process from hospital services borne from an apparent reluctance of hospital staff to let go, through involving hospice. Education, partnership working, planning for all possible outcomes seems crucial in further developing quality palliative care for infants and their families.
Price J E; Mendizabal-Espinosa R M
Journal of Neonatal Nursing
2019
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<a href="http://doi.org/10.1016/j.jnn.2019.03.001" target="_blank" rel="noreferrer noopener">10.1016/j.jnn.2019.03.001</a>
Predictors of Late Palliative Care Referral in Children with Cancer
Child; Hematologic Neoplasms; Referral and Consultation; Palliative Care; pediatric oncology; Palliative care; early integration; Only Child; consultation; palliative oncology; timing
CONTEXT: Early integration of palliative care (PC) in the management of children with high-risk cancer is widely endorsed by patients, families, clinicians, and national organizations. However, optimal timing for PC consultation is not standardized, and variables that influence timing of PC integration for children with cancer remain unknown. OBJECTIVES: To investigate associations between demographic, disease, treatment, and end-of-life attributes and timing of PC consultation for children with high-risk cancer enrolled on a PC service. METHODS: A comprehensive standardized tool was used to abstract data from the medical records of 321 patients treated at a large academic pediatric cancer who died between 2011 and 2015. RESULTS: Gender, race, ethnicity, enrollment on a phase I protocol, number of high-acuity hospitalizations, and receipt of cardiopulmonary resuscitation were not associated with timing of PC involvement. Patients with hematologic malignancy, those who received cancer-directed therapy during the last month of life, and those with advance directives documented </=1 week prior to death had higher odds of late PC referral (malignancy: OR 3.24, p=0.001; therapy: OR 4.65, p<0.001; directive: OR 4.81, p<0.0001). Patients who received hospice services had lower odds of late PC referral <30 days prior to death (OR 0.31, p<0.001). CONCLUSIONS: Hematologic malignancy, cancer-directed therapy at the end of life, and delayed advance directives documentation are associated with late PC involvement in children who died with cancer. Identification of these variables affords opportunities to study targeted interventions to enhance access to earlier PC resources and services for children with high-risk cancer and their families.
Kaye EC; Jerkins J; Gushue CA; DeMarsh S; Sykes A; Lu Z; Snaman JM; Blazin L; Johnson LM; Levine DR; Morrison RR; Baker JN
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.01.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.01.021</a>
End-of-Life Treatments in Pediatric Patients at a Government Tertiary Cancer Center in India
Hospital Mortality; Infant Newborn; Patient Admission; Human; Child; Referral and Consultation; Palliative Care; Child Preschool; Survival; Infant; Hospitals Pediatric; Adolescence; India; Inpatients; Retrospective Design; Record Review; Analgesics Opioid -- Therapeutic Use; Antianxiety Agents Benzodiazepine -- Therapeutic Use; Cancer Care Facilities -- India; Childhood Neoplasms -- Diagnosis; Childhood Neoplasms -- Drug Therapy; Childhood Neoplasms -- Mortality; Childhood Neoplasms -- Prognosis; Delirium -- Symptoms; Dyspnea -- Symptoms; Hematologic Neoplasms -- Diagnosis; Hemorrhage -- Symptoms; Pain -- Symptoms; Seizures -- Symptoms; Terminal Care -- In Infancy and Childhood; Tertiary Health Care
Jacob J; Matharu Jaskirt K; Palat G; Sinha S; Brun Eva; Wiebe T; Segerlantz M
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2017.0632" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0632</a>
Modes of Death Within a Children's Hospital
Human; Length of Stay; Child; Hospitalization; Intensive Care Units Pediatric; Treatment Failure; Referral and Consultation; Palliative Care; Hospitals Pediatric; Intensive Care Units Neonatal; Resuscitation; Confidence Intervals; Odds Ratio; Qualitative Studies; Descriptive Statistics; Race Factors; Retrospective Design; Whites; Blacks; Hospital Mortality -- In Infancy and Childhood; Multiple Logistic Regression
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling. RESULTS: We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13--0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05--5.73), mostly because of code events occurring in the first 24 hours of hospitalization. CONCLUSIONS: Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
Trowbridge A; Walter JK; McConathey E; Morrison W; Feudtner C
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-4182" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-4182</a>
Benefits of Early Referral to Pediatric Palliative Care for a Child With a Rare Disease
Palliative Care; Decision Making; Intensive Care Units; Referral and Consultation; Mutation; Child; Male; Pain Management; Intellectual Disability; Health Education; Parental Attitudes; Pediatric; Pediatric Care; Connective Tissue Diseases Diagnosis; Connective Tissue Diseases Familial and Genetic In Infancy and Childhood; Connective Tissue Diseases Symptoms; Connective Tissue Diseases Therapy In Infancy and Childhood; Dyspnea Drug Therapy; Face Pathology; Family Education; Fibrosis; Morphine Therapeutic Use; Clinical; Muscle; Skeletal Abnormalities
The article outlines the benefits of palliative care supporting the child and family with attention to individualized symptom management, improved communication, and support making difficult decisions. Topics mentioned include the research program Care4Rare at the Children's Hospital of Eastern Ontario, the importance of finding a name or a genetic difference or a cause for future family planning, and the role of morphine for symptom management.
Vadeboncoeur C; McHardy M
Pediatrics
2018
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/10.1542/peds.2017-3417" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-3417</a>
Associations Between Pediatric Palliative Care Consultation and End-of-Life Preparation at an Academic Medical Center: A Retrospective EHR Analysis
Academic Medical Centers; Palliative Care; Referral and Consultation
OBJECTIVES: Our aim in this study was to understand usage patterns of pediatric palliative care (PPC) consultation and associations with end-of-life preparation among pediatric patients who are deceased. METHODS: We reviewed 233 pediatric mortalities. Data extraction from the electronic health record included determination of PPC consultation by using Current Procedural Terminology codes. Diagnoses were identified by International Classification of Disease codes and were classified into categories of life-threatening complex chronic conditions (LT-CCCs). Data analysis included Student's t test, Wilcoxon rank test, Fisher's exact test, chi(2) test, and multivariable logistic regression. RESULTS: The overall PPC consultation rate for pediatric patients who subsequently died was 24%. A PPC consultation for patients admitted to the pediatric ward and PICU was more likely than for patients cared for in the NICU (31% vs 12%, P < .01) and was more likely for those with an LT-CCC (40% vs 10%, P < .01), particularly malignancy (65% vs 35%, P < .01). Also noted were increased completion of Physician Orders for Life-Sustaining Treatment forms (8 vs 0, P < .01) and increased documentation of mental health disorders (60% vs 40%, P = .02). CONCLUSIONS: Our findings suggest that PPC consultation for patients in the pediatric ward and PICU is more likely among patients with a greater number of LT-CCCs, and is associated with increased Physician Orders for Life-Sustaining Treatment preparation and documentation of mental health disorders. Patients at risk to not receive PPC consultation are those with acute illness and patients in the NICU.
Stutz M; Kao RL; Huard L; Grotts J; Sanz J; Ross MK
Hospital Pediatrics
2018
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<a href="http://doi.org/10.1542/hpeds.2017-0016" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2017-0016</a>
Physician Perspectives on Palliative Care for Children with Advanced Heart Disease: A Comparison between Pediatric Cardiology and Palliative Care Physicians
pediatric end-of-life care; Child; Only Child; Palliative Care; Physicians; Referral and Consultation; pediatric palliative care; child; advanced heart disease; pediatric heart failure; physician perspectives
BACKGROUND: While the importance of pediatric palliative care (PPC) for children with life-threatening illness is increasingly recognized, little is known about physicians' attitudes toward palliative care for children with heart disease. OBJECTIVE: To compare the perspectives of PPC physicians and pediatric cardiologists regarding palliative care in pediatric heart disease. DESIGN: Cross-sectional web-based surveys. RESULTS: Responses from 183 pediatric cardiologists were compared to those of 49 PPC physicians (response rates 31% [183/589] and 28% [49/175], respectively). Forty-eight percent of PPC physicians and 63% of pediatric cardiologists agreed that availability of PPC is adequate (p = 0.028). The majority of both groups indicated that PPC consultation occurs "too late." Compared with pediatric cardiologists, PPC physicians reported greater competence in all areas of advance care planning, communication, and symptom management. PPC physicians more often described obstacles to PPC consultation as "many" or "numerous" (42% vs. 7%, p < 0.001). PPC physicians overestimated how much pediatric cardiologists worry about PPC introducing inconsistency in approach (60% vs. 11%, p < 0.001), perceive lack of added value from PPC (30% vs. 7%, p < 0.001), believe that PPC involvement will undermine parental hope (65% vs. 44%, p = 0.003), and perceive that PPC is poorly accepted by parents (53% vs. 27%, p < 0.001). CONCLUSIONS: There are significant differences between pediatric cardiologists and PPC physicians in perception of palliative care involvement and perceived barriers to PPC consultation. An intervention that targets communication and exchange of expertise between PPC and pediatric cardiology could improve care for children with heart disease.
Balkin EM; Sleeper LA; Kirkpatrick JN; Swetz KM; Coggins MK; Wolfe J; Blume ED
Journal of Palliative Medicine
2018
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.2017.0612" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0612</a>
Referral practices of pediatric oncologists to specialized palliative care
referral and consultation; oncology; attitude of health personel
PURPOSE: The aims of this study are to describe the attitudes and referral practices of pediatric oncologists (POs) to specialized palliative care (SPC), and to compare them with those of adult oncologists (AOs). METHODS: Canadian members of the American Society of Pediatric Hematology/Oncology (ASPHO), Canadian Association of Medical Oncologists (CAMO), Canadian Association of Radiation Oncologists (CARO), and the Canadian Society of Surgical Oncology (CSSO) participated in an anonymous survey assessing SPC referral practices. RESULTS: The response rate was 70 % (646/921), 52 % (43/82) for ASPHO members; 5 CARO members self-identified as POs, for a total of 48 POs and 595 AOs. Ninety-six percent of POs had access to inpatient SPC consultation services (vs. 48 % AOs), 31 % to a PCU (vs. 82 % AOs), and 27 % to an outpatient SPC clinic (vs. 73 % AOs). POs more often stated their SPC services accepted patients on chemotherapy than AOs (64 vs. 37 %, p = 0.0004). POs were less likely to refer only after chemotherapy had been stopped (13 vs. 29 % for AOs) and more likely to state that ideally referral should occur at the diagnosis of cancer/incurable cancer (73 vs. 43 %). POs were more likely to agree they would refer earlier if palliative care were renamed "supportive care" (58 vs. 33 %, p < 0.0001), that palliative care adds too many providers (17 vs. 7 %, p = 0.002), and that palliative care was perceived negatively by their patients (60 vs. 43 %, p = 0.02). CONCLUSIONS: Although POs acknowledge the importance of early referral to SPC for children with cancer, there remain resource and attitudinal barriers to overcome in this regard.
2014-09
Wentlandt K; Krzyzanowska MK; Swami N; Rodin G; Le Lisa W; Sung L; Zimmermann C
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
2014
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Journal Article
<a href="http://doi.org/10.1007/s00520-014-2203-6" target="_blank" rel="noreferrer">10.1007/s00520-014-2203-6</a>
Predictive factors for do-not-resuscitate designation among terminally ill cancer patients receiving care from a palliative care consultation service.
Female; Humans; Male; Prognosis; Aged; Middle Aged; Sex Factors; Multivariate Analysis; Time Factors; retrospective studies; DNAR; Taiwan; Resuscitation Orders; Palliative Care; Neoplasms/th [Therapy]; referral and consultation; Terminally Ill; Family/px [Psychology]; Liver Neoplasms/di [Diagnosis]; Liver Neoplasms/pp [Physiopathology]; Liver Neoplasms/px [Psychology]; Liver Neoplasms/th [Therapy]; Neoplasms/di [Diagnosis]; Neoplasms/pp [Physiopathology]; Neoplasms/px [Psychology]; Resuscitation Orders/px [Psychology]; Terminally Ill/px [Psychology]
CONTEXT: Since the development of palliative care in the 1980s, "do not resuscitate" (DNR) has been promoted worldwide to avoid unnecessary resuscitation in terminally ill cancer patients., OBJECTIVES: This study aimed to evaluate the effect of a palliative care consultation service (PCCS) on DNR designation and to identify a subgroup of patients who would potentially benefit from care by the PCCS with respect to DNR designation., METHODS: In total, 2995 terminally ill cancer patients (with a predicted life expectancy of less than six months by clinician estimate) who received care by the PCCS between January 2006 and December 2010 at a single medical center in Taiwan were selected. Among these, the characteristics of 2020 (67.4%) patients who were not designated as DNR at the beginning of care by the PCCS were retrospectively analyzed to identify variables pertinent to DNR designation., RESULTS: A total of 1301 (64%) of 2020 patients were designated as DNR at the end of care by the PCCS. Male gender and primary liver cancer were characteristics more predominantly found among DNR-designated patients who also had worse performance status, higher prevalence of physical distress, and shorter intervals from palliative care referral to death than did patients without DNR designation. On univariate analysis, a higher probability of DNR designation was associated with male gender, duration of care by the PCCS of more than 14 days, patients' prognostic awareness, family's diagnostic and prognostic awareness, and high Palliative Prognostic Index (PPI) scores. On multivariate analysis, duration of care by the PCCS, patients' prognostic awareness, family's diagnostic and prognostic awareness, and a high PPI score constituted independent variables predicting DNR-designated patients at the end of care by the PCCS., CONCLUSION: DNR designation was late in terminally ill cancer patients. DNR-designated cancer patient indicators were high PPI scores, patients' prognostic awareness, family's diagnostic and prognostic awareness, and longer durations of care by the PCCS.Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
2014
Kao Chen-Yi; Wang Hung-Ming; Tang Shu-Chuan; Huang K-G; Jaing T-H; Liu Chien-Ying; Liu Keng-Hao; Shen W-C; Wu Jin-Hou; Hung Y-S; Hsu H-C; Chen JS; Liau Chi-Ting; Lin Yung-Chang; Su Po-Jung; Hsieh C-H; Chou WC
Journal Of Pain And Symptom Management
2014
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2013.03.020" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.03.020</a>
Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children?
adolescent; Child; Humans; Terminally Ill; referral and consultation; Euthanasia; Health Services Needs and Demand; Belgium; Freedom
2014-06
Friedel M
International Journal Of Palliative Nursing
2014
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).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2014.20.6.265" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.6.265</a>
Investigations of the Pediatric Hospice Care in Taiwan 2005 to 2010
Neoplasms; hospice care; referral and consultation; Pediatrics; Taiwan; family medicine
Background: The utilization of pediatric hospice care remains unclear in Taiwan. Methods: Data were analyzed from the claims of hospice admissions in patients aged 18 years or younger using the National Health Insurance Research Database from 2005 to 2010. Results: A total of 91 patients and 136 admissions were enrolled (male–female = 50:41; mean 11.6 years old). In all, 62 patients were admitted once, including 47 patients who died. All the patients had cancer, with brain cancer (40.7%) accounting the most . Among acute comorbidities, neurological complications (16.2%) were mostly accounted. Family physicians provided most (64.7%) of the hospice services. Hospice stay ≤3 days correlated positively with death in hospices (odds ratio = 2.922, 95% confidence interval = 1.268-6.730). Conclusions: Pediatric hospice care revealed characteristics different from adults. Underlying late referrals were prevalent. There is space to promote the utilization of hospices for terminally ill pediatric patients.
2014-08
Kang S-C; Hwang S-J; Wang Wei-Shu
American Journal Of Hospice & Palliative Medicine
2014
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Journal Article
<a href="http://doi.org/10.1177/1049909113492007" target="_blank" rel="noreferrer">10.1177/1049909113492007</a>
The attitudes of neonatal professionals towards end-of-life decision-making for dying infants in Taiwan
Cross-Sectional Studies; Female; Humans; infant; Male; Intensive Care Units; Terminal Care; decision making; referral and consultation; Adult; Attitude of Health Personnel; Education; Medical Staff; Withholding Treatment; Questionnaires; Middle Aged; Attitude to Death; Resuscitation Orders; Self Report; Neonatology; Medical; Neonatal; Nursing Staff; Newborn; Clinical; Ethics Committees; Taiwan; Hospital; continuing
The purposes of research were to describe the neonatal clinicians' personal views and attitudes on neonatal ethical decision-making, to identify factors that might affect these attitudes and to compare the attitudes between neonatal physicians and neonatal nurses in Taiwan. Research was a cross-sectional design and a questionnaire was used to reach different research purposes. A convenient sample was used to recruit 24 physicians and 80 neonatal nurses from four neonatal intensive care units in Taiwan. Most participants agreed with suggesting a do not resuscitate (DNR) order to parents for dying neonates (86.5%). However, the majority agreed with talking to patients about DNR orders is difficult (76.9%). Most participants agree that review by the clinical ethics committee is needed before the recommendation of 'DNR' to parents (94.23%) and nurses were significantly more likely than physicians to agree to this (p=0.043). During the end-of-life care, most clinicians accepted to continue current treatment without adding others (70%) and withholding of emergency treatments (75%); however, active euthanasia, the administration of drug to end-of-life, was not considered acceptable by both physicians and nurses in this research (96%). Based on our research results, providing continuing educational training and a formal consulting service in moral courage for neonatal clinicians are needed. In Taiwan, neonatal physicians and nurses hold similar values and attitudes towards end-of-life decisions for neonates. In order to improve the clinicians' communication skills with parents about DNR options and to change clinicians' attitudes for providing enough pain-relief medicine to dying neonates, providing continuing educational training and a formal consulting service in moral courage are needed.
2013-06
Huang L-C; Chen CH; Liu Hsin-Li; Lee Ho-Yu; Peng Niang-Huei; Wang Teh-Ming; Chang YC
Journal Of Medical Ethics
2013
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).
Journal Article
<a href="http://doi.org/10.1136/medethics-2011-100428" target="_blank" rel="noreferrer">10.1136/medethics-2011-100428</a>
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
adolescent; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Journal Of Child Health Care
2015
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).
Journal Article
<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">10.1177/1367493513510630</a>
Referring a patient and family to high-quality palliative care at the close of life: "We met a new personality... with this level of compassion and empathy"
Humans; Male; Middle Aged; Family Relations; Hospices; Quality of Health Care; Primary Health Care; patient care team; referral and consultation; empathy; Neoplasms; Palliative Care/standards; social support
Palliative care services are increasingly available to primary care physicians for both expert consultations and services to seriously ill patients. The United States now has more than 1400 hospital-based palliative care teams and more than 4700 hospice programs. We use an illustrative case of a palliative care hospitalization and intervention for a middle-aged man with severe pain from spinal metastases to discuss 4 key questions that a primary care physician faces in caring for the seriously ill patient with difficult symptom management: (1) Should I refer a patient to a hospital-based palliative care team or to hospice services for difficult symptom management? (2) If the patient is referred to a hospital-based palliative care team, what should I, as the primary care physician, expect? (3) When should I refer to hospice services a patient initially referred to a hospital-based palliative care team? and (4) How can I choose a hospice program that will provide competent, coordinated, and compassionate patient- and family-centered care? Primary care physicians now may choose among hospice programs, and the programs may vary in their quality of care. Validated tools to measure patient and family perceptions of the quality of hospice care are now available but progress in defining and measuring the quality of hospice care is still needed before actionable information will be available to guide the choice of hospice programs for physicians and consumers.
2009
Teno JM; Connor SR
Journal Of The American Medical Association
2009
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).
Journal Article
<a href="http://doi.org/10.1001/jama.2009.109" target="_blank" rel="noreferrer">10.1001/jama.2009.109</a>
Coordinating care--a perilous journey through the health care system
Delivery of Health Care; Humans; United States; Physicians; referral and consultation; Continuity of Patient Care/organization & administration; Delivery of Health Care/organization & administration; Patient Care Team/organization & administration; Computerized/organization & administration; Family/organization & administration; Integrated; Medical Records Systems; Patient Care Management/organization & administration
2008
Bodenheimer T
The New England Journal Of Medicine
2008
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).
Journal Article
<a href="http://doi.org/10.1056/NEJMhpr0706165" target="_blank" rel="noreferrer">10.1056/NEJMhpr0706165</a>
Center to Advance Palliative Care palliative care consultation service metrics: consensus recommendations
Humans; Palliative Care; referral and consultation; Consensus; Practice Guidelines as Topic; Length of Stay; Wisconsin; Demography; Palliative Care; Biometry; Community Health Centers; Essential Data Set
The need to standardize the prospective collection and analysis of data has been a cornerstone of education and technical assistance provided by the Center to Advance Palliative Care (CAPC). Data analysis is vital for strategic planning, quality improvement, and demonstration of program impact to hospital administrators, private funders, and policymakers. To develop a set of core measures, CAPC convened a consensus panel in 2008 to focus on the topic of operational metrics for consultation services. Operational metrics, as distinct from clinical, customer and financial metrics, describe the characteristics of patients seen on the consultation service, such as age, disease, location, referring service and disposition. The panel arrived at 12 metric domains, all but one of which can be used for either internal programmatic use or for external comparisons of service characteristics/impact between different hospitals. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care consultation teams are encouraged to collect and report outcomes for each of the twelve metric domains described here.
2008-12
Weissman DE; Meier DE; Spragens LH
Journal Of Palliative Medicine
2008
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).
Journal Article
<a href="http://doi.org/10.1089/jpm.2008.0178" target="_blank" rel="noreferrer">10.1089/jpm.2008.0178</a>
Symptom pathways from referral to death: measuring palliative care outcomes.
Female; Humans; Male; Aged; Middle Aged; Australia; 80 and over; DNAR; Death; Palliative Care; referral and consultation; Treatment Outcome; Disease/cl [Classification]
This article reports on the first stage of a process to develop a clinical performance indicator for a community-based palliative care service that may inform the development of an agreed set of indicators for the whole sector. The study explores whether symptom data that are routinely collected to plan and monitor the care being provided by a community-based palliative care service also have the potential to be used to audit care against standards, compare services, and inform funders or purchasers. The article looks at the symptom distress scores of patients over the whole episode of their care from referral to death, by constructing pathways for each symptom (pain, insomnia, appetite, nausea, bowel, breathing problems, fatigue and pain). How these data may provide a multi-purpose measure of clinical outcomes is then discussed. It is concluded that, following further research to establish the symptom assessment scale's reliability and validity in different settings, it should be considered for universal adoption by palliative care services.
2008
Lewin G; Haslehurst P; Smith J
International Journal Of Palliative Nursing
2008
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).
Journal Article
<a href="http://doi.org/10.12968/ijpn.2008.14.2.28596" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.2.28596</a>
Cystic fibrosis and transition to adult medical care
Humans; Young Adult; Pediatrics; Age Factors; adolescent; referral and consultation; Adolescent Transitions; Cystic Fibrosis/therapy
Transition of young adults with cystic fibrosis (CF) from pediatric to adult medical care is an important priority, because many patients are living well into their fourth decade, and by 2010 more than half of all people living with CF will be older than 18 years. Transition to adulthood, a developmental process of skill-building in self-management supported by the health system, is important for the successful transfer to adult CF care. The US Cystic Fibrosis Foundation has been proactive in preparing for increasing numbers of young adults in need of specialized adult-oriented care by creating specialized clinical fellowships for physician providers and mandating establishment of adult CF programs. Despite these initiatives, how to best facilitate transition and to define and measure successful outcomes after transfer to adult care remains unclear. Many adults with CF continue to receive care in the pediatric setting, whereas others transfer before being developmentally prepared. In this state-of-the-art review we provide context for the scope of the challenges associated with designing and evaluating health care transition for adolescents and young adults with CF and implications for all youth with special health care needs.
2010
Tuchman LK; Schwartz L; Sawicki GS; Britto MT
Pediatrics
2010
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).
Journal Article
<a href="http://doi.org/10.1542/peds.2009-2791" target="_blank" rel="noreferrer">10.1542/peds.2009-2791</a>
Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guideline from the American College of Physicians
Humans; Caregivers/psychology; referral and consultation; Palliative Care/standards; social support; Intervention; Interventions; Continuity of Patient Care/standards; Pain/therapy; Patient Care Team/standards; Advance Care Planning/standards; Depression/therapy; Dyspnea/therapy
RECOMMENDATION 1: In patients with serious illness at the end of life, clinicians should regularly assess patients for pain, dyspnea, and depression. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 2: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage pain. For patients with cancer, this includes nonsteroidal anti-inflammatory drugs, opioids, and bisphosphonates. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 3: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage dyspnea, which include opioids in patients with unrelieved dyspnea and oxygen for short-term relief of hypoxemia. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 4: In patients with serious illness at the end of life, clinicians should use therapies of proven effectiveness to manage depression. For patients with cancer, this includes tricyclic antidepressants, selective serotonin reuptake inhibitors, or psychosocial intervention. (Grade: strong recommendation, moderate quality of evidence.) RECOMMENDATION 5: Clinicians should ensure that advance care planning, including completion of advance directives, occurs for all patients with serious illness. (Grade: strong recommendation, low quality of evidence.).
2008
Qaseem A; Snow V; Shekelle PG; Casey DE; Cross JT; Owens DK; Assessment Subcommittee of the American College of Physicians Clinical Efficacy; Dallas P; Dolan NC; Forciea MA; Halasyamani L; Hopkins RH; Shekelle PG
Annals Of Internal Medicine
2008
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).
Journal Article
<a href="http://doi.org/10.7326/0003-4819-148-2-200801150-00009" target="_blank" rel="noreferrer">10.7326/0003-4819-148-2-200801150-00009</a>