Can _palliative care reports_ improve end-of-life care for hospitalized patients?
Evaluation feedback; physician reports; Quality improvement
Improvement in the care of dying hospitalized patients was sought by providing evaluative feedback to individual physicians (n = 46) and nurses in three biannual _Palliative Care Reports._ Hospitalized adult patients (n = 194) for whom _death was probable_ were prospectively identified from the critical care or geriatric services, and a _palliative care_ social work evaluation provided. Educational sessions on palliative care were held for physicians and nurses. Medical record review and family interviews were used to generate 10 scores per patient, which evaluated satisfaction with care, relief of symptoms (pain, dyspnea, gastrointestinal, psychological), and the timeliness of care planning. Subjective comments from a quality improvement committee and focussed educational material was also included. Despite these efforts, no change in the cohort's median report scores occurred over the 18 months, but several institutional policies were examined and altered, and interest and support for a palliative care consultation service was obtained.
2002
Jacobs LG; Bonuck K; Burton W
Journal Of Pain And Symptom Management
2002
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/10.1016/s0885-3924(02)00492-x" target="_blank" rel="noreferrer">10.1016/s0885-3924(02)00492-x</a>
Challenges and Priorities for Pediatric Palliative Care Research in the United States and Similar Practice Settings: Report from a Pediatric Palliative Care Research Network Workshop
palliative care; decision-making; funding; pediatric; family; infrastructure; methodology; research; symptoms; training
CONTEXT: In order to dramatically advance the evidence base for pediatric palliative care (PPC) interventions, practices, and programs in the United States and similar practice settings, the field needs to better understand the challenges and opportunities for rigorous scholarship. OBJECTIVES: The Pediatric Palliative Care Research Network conducted a workshop to clarify challenges and identify key priorities. METHODS: The workshop focused on PPC research topics and methods, including: outcomes measurement, qualitative inquiry, analyses of "big data," prospective collection of research data, case series and cohort studies, and intervention trials, with synthesizing summary and follow-up discussions. All attendees reviewed and approved the final report. RESULTS: Five common challenges were identified: patient diversity and small population size; interdependencies and dynamic interactions between child, family members, and disease processes over time; outcomes and measurement; workforce and infrastructure limitations; and presumed burden of PPC research upon participants. Seven priorities emerged: bolster training and development of PPC investigators; develop core resources; advance symptom measurement (and measurements of other exposures and outcomes); improve symptom management and quality of life interventions; improve communication, elicitation of goals of care, and decision-making; understand family impact and facilitate or improve family adaptation and coping; and analyze and improve systems of care, policy, and education. CONCLUSION: These challenges and priorities identify key research areas that can guide individual investigators and research funders to advance the field.
Feudtner C; Rosenberg A R; Boss R D; Wiener L; Lyon M E; Hinds P S; Bluebond-Langner M; Wolfe J
Journal of Pain and Symptom Management
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.jpainsymman.2019.08.011" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.08.011</a>
Challenges in Pediatric Advance Care Discussions Between Health Care Professionals and Parents of Children with a Life-Limiting Condition: A Qualitative Pilot Study
advance care planning; death; Germany; semi structured interview; shared decision making; pilot study; morality; conference abstract; human; child; female; male; clinical article; palliative therapy; conversation
Objectives: Research has shown that advance care planning concepts for adults need to be revised and adapted to be applicable to pediatric situations. A consistent approach to pediatric advance care planning (pACP) is still missing. The study aimed to (1) identify challenges during pediatric advance care discussions and (2) explore the perception of participants about pACP with the final goal of (3) developing a pACP conversation guideline.
Hein K; Monz A; Daxer M; Heitkamp N; Knochel K; Jox R; Borasio GD; Fuehrer M
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.419" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.419</a>
Changes In Parents After The Death Of A Child From Cancer
Adaptation Psychological; Bereavement; Death; Adult; Canada; Child; Emotions; Family/ Psychology; Female; Humans; Male; Parents/ Psychology; Siblings/psychology; United States
CONTEXT: Few studies have compared multiple perspectives of changes experienced by parents after a child's death. OBJECTIVES: This study used interviews with bereaved parents and siblings to examine changes in parents during the first year after the death of a child from cancer. METHODS: Mothers (n=36), fathers (n=24), and siblings (n=39) from 40 families were recruited from three hospitals in the U.S. and Canada three to 12 months after the death (M=10.7, SD=3.5). Semistructured interviews with open-ended questions were conducted in the home with each participating parent and sibling separately. Content analysis identified emerging themes, and frequencies were compared between each paired set of reports (mother vs. sibling, father vs. sibling, and mother vs. father). RESULTS: Parents and siblings identified two major categories of change experienced by bereaved parents. These changes occurred in their personal lives (e.g., emotions, perspectives and priorities, physical state, work habits, coping/behaviors, spiritual beliefs, and feeling something is missing) and relationships (e.g., family, others). Ninety-four percent of the mothers, 87% of the fathers, and 69% of the siblings reported parental changes in at least one of these categories. Parents were more likely to report changes in priorities, whereas siblings reported more sadness in parents after the death. CONCLUSION: Positive and negative changes in parents after the death of a child from cancer occur in both personal and relational domains. Additional research is needed to determine the impact of a child's death on bereaved parents over time and to develop strategies to promote healthy adjustment.
Gilmer MJ; Foster TL; Vannatta K; Barrera M; Davies B; Dietrich MS; Fairclough DL; Grollman J; Gerhardt CA
Journal Of Pain And Symptom Management
2012
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://doi.org/10.1016/j.jpainsymman.2011.10.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.10.017</a>
Changes Over Time in Good-Parent Beliefs Among Parents of Children with Serious Illness: Two Year Cohort Study (TH320B)
Child; Cohort Studies; Only Child; child
Hill D; Faerber J; Carroll K; Miller V; Morrison W; Hinds P; Feudtner C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.024" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.024</a>
Characteristics of a Perinatal Palliative Care Program Over 10 years
infant; hospice; obstetrician; palliative therapy; major clinical study; retrospective study; comfort; medical record; patient referral; neonatal intensive care unit; neonatologist; conference abstract; human; child; female; male; controlled study; diagnosis; resuscitation; positive end expiratory pressure; genetics
Background: Perinatal Hospice is a relatively new component of pediatric palliative care, which supports families who are expecting the birth of a child with life-threatening or life-limiting condition. Parents in this situation have unique needs and often experience emotional isolation following their child's loss. This study explores the characteristics of babies and families referred for perinatal hospice, and provides descriptive analysis of diagnosis, interventions and outcomes.
Doherty M; Dumond LG; Williams R; Stoppels N
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2018.10.360" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.360</a>
Charting the Territory: End-of-Life Trajectories for Children with Complex Neurological, Metabolic and Chromosomal Conditions
DNAR orders; pediatrics; terminal care
OBJECTIVES: For parents, family or clinicians of children with rare, life-threatening conditions there is little information regarding likely symptoms, illness trajectory and end-of-life care. This descriptive analysis of a bereaved cohort recruited in the Charting the Territory (CTT) study describes patient characteristics, symptoms, use of medications, discussion of resuscitation orders and care provided preceding and during the end-of-life. METHOD(S): Of the 275 children enrolled in the CTT study, 54 died between 2009 and 2014. Baseline demographic information, symptoms, interventions and medical information were collected via chart review, interviews and surveys. RESULT(S): 51 of the 54 children had complete medical records. Of the seven symptoms evaluated, children were found to have an increase in median symptoms from baseline (n=2) to time of death (n=3). Opioids were used in the last 48 hours of life in 29 (56.9%) children, whereas only eight (15.7%) were receiving opioids at baseline. Do Not Attempt Resuscitation orders were in place at baseline in 17 (33.3%) children, increasing to 33 (64.7%) at time of death. Death occurred in a hospice setting in 16 (31.4%) children. CONCLUSION(S): While much emphasis on pediatric palliative care has been on supportive treatment and symptom management, when faced with a lack of sound understanding of a rare illness, the mode of care can often be reactive and based on critical needs. By developing greater knowledge of symptoms and illness trajectory, both management and care can be more responsive and anticipatory, thereby helping ease illness burden and suffering. Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bao D; Feichtinger L; Andrews G; Pawliuk C; Steele R; Siden H H
Journal of pain and symptom management
2020
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.jpainsymman.2020.08.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.033</a>
Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population
children; life-threatening condition; pediatric palliative care; child abuse; Maltreatment
CONTEXT: Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPT). More information is needed to inform and optimize collaborative care. OBJECTIVES: Define and describe the population of children with PPC involvement for whom there was concern for maltreatment. METHODS: Single-center, retrospective chart review of children with PPC involvement for whom there was concern for maltreatment, defined as involvement of CPS/CPT between 2005 and 2017. Medical and demographic variables were abstracted and analyzed. Analyses include descriptive tabulation and measurements of association between PPC and CPS/CPT variables. RESULTS: Among 1,804 children followed by PPC, 189 (10.4%) had documented CPS/CPT involvement. Among those, 113 (60%) had CPT involvement, 88 (47%) had concerns of medical neglect, and 100 (53%) had simultaneous CPS/CPT and PPC involvement. Goals of PPC consultation varied by clinical characteristics and concerns for medical neglect. Frequency of CPT involvement and physical abuse concerns also varied by child clinical characteristics. CONCLUSION: PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be are aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.
Cleveland RW; Ullrich C; Slingsby B; Keefer P
Journal of Pain and Symptom Management
2020
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.jpainsymman.2020.11.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.11.007</a>
Clinician end-of-life experiences with pediatric Muslim patients at a US quaternary care center
clinician experience; culturally-appropriate care; diversity; Muslim patients; pediatric
CONTEXT: A small, growing body of data exist discussing the experiences of Muslim patients with the palliative care system, both in the United States and abroad, as well as providers' experiences with Muslim patients. However, no studies evaluate clinician experiences with Muslim patients in the United States, and none address the unique dynamics of pediatric clinician experiences with Muslim patients and their families in the EOL setting. OBJECTIVES: The purpose of this study is to perform a thematic analysis of clinician experiences with pediatric Muslim patients and families at the end of life. METHODS: This was a qualitative study of pediatric clinicians at Duke University Medical Center in the Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit from August 2018 to February 2019. We conducted semi-structured interviews with nurses, attending physicians, and social workers to assess participants' experiences caring for Muslim patients and families. We analyzed interview transcripts using descriptive content analysis with NVivo10. RESULTS: We interviewed 16 clinicians at Duke University Medical Center Pediatric Intensive Care Unit, Pediatric Cardiac Intensive Care Unit, and Pediatric Bone Marrow Unit. Five physicians, 5 social workers, and 6 nurses were interviewed. The majority of providers were female, Caucasian, and Christian in an institution where Muslim patients are a significant minority. Several themes emerged highlighting language barriers, difficulty engaging with Muslim families, variations in approach to care and communication, discomfort with gender roles, moral distress with unrelatable decision-making, and external pressures on patient decision-making. CONCLUSIONS: A thematic analysis of pediatric clinicians at a quaternary care center in the Southern United States yielded several prominent themes. Many clinicians recognize they likely provide disparate care to minority patients for a variety of reasons encompassing the above barriers. As we work to care for an increasingly diverse patient population, more research into barriers to care and effective educational methods is needed.
Kolmar A; Kamal AH; Steinhauser KE
Journal of Pain and Symptom Management
2022
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.01.005" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.01.005</a>
Clinician Identified Barriers and Strategies for Advance Care Planning in Seriously Ill Pediatric Patients
pediatrics; advance care planning; life-limiting illness; communication; qualitative research; stakeholder engagement
CONTEXT: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision. OBJECTIVE: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision. DESIGN: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies. RESULTS: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory. CONCLUSION: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values.
Basu MR; Partin L; Revette A; Wolfe J; DeCourcey DD
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.03.006" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.03.006</a>
Clusters Of Multiple Complex Chronic Conditions: A Latent Class Analysis Of Children At End Of Life.
Hospice Care; Pediatrics; Complex Chronic Conditions; Medicare Managed Care; Child; Clinical Neurology; Cancer; Palliative Care; Dependence; Latent Class Analysis; Couples; End Of Life Care; Health Care Sciences & Services Medicine General & Internal
Complex Chronic Conditions; Children; End Of Life; Latent Class Analysis; Pediatrics
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in children at end of life. Previous work has not fully accounted for patterns of multiple conditions when evaluating care among these children.
OBJECTIVES:
The objective of the study was to understand the clusters of complex chronic conditions present among children in the last year of life.
METHODS:
Participants were 1423 pediatric decedents from the 2007 to 2008 California Medicaid data. A latent class analysis was used to identify clusters of children with multiple complex chronic conditions (neurological, cardiovascular, respiratory, renal, gastrointestinal, hematologic, metabolic, congenital, cancer). Multinomial logistic regression analysis was used to examine the relationship between demographic characteristics and class membership.
RESULTS:
Four latent classes were yielded: medically fragile (31%); neurological (32%); cancer (25%); and cardiovascular (12%). Three classes were characterized by a 100% likelihood of having a complex chronic condition coupled with a low or moderate likelihood of having the other eight conditions. The four classes exhibited unique demographic profiles.
CONCLUSION:
This analysis presented a novel way of understanding patterns of multiple complex chronic conditions among children that may inform tailored and targeted end-of-life care for different clusters.
Lindley LC; Mack JW; Bruce DJ
Journal Of Pain And Symptom Management
2016
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).
Communication Challenges of Oncologists and Intensivists Caring for Pediatric Oncology Patients: A Qualitative Study
Communication Barriers; Goals Of Care; Interprofessional Communication; Pediatric Ethics; Pediatric Intensive Care; Pediatric Oncology
CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows. RESULTS: We identified key themes (3 barriers, 4 facilitators) to having GCDs with families of oncology patients who have received intensive care. Barriers included challenges to communication within teams because of hierarchy and between teams due to incomplete sharing of information and confusion about who should initiate GCDs; provider experiences of internal conflict about how to engage parents in decision making and about the "right thing to do" for patients; and lack of education and training in communication. Facilitators included team preparation for family meetings; skills for partnering with families; the presence of palliative care specialists; and informal education in communication and willingness for further training in communication. Notably, the education theme was identified as both a barrier and a resource. CONCLUSION: We identified barriers to communication with families both within and between teams and for individual physicians. Formal communication training and processes that standardize communication to ensure completeness and role delineation between clinical teams may improve oncologists' and intensivists' ability to initiate GCDs, thereby fulfilling their ethical obligations of decision support.
Odeniyi F; Nathanson PG; Schall TE; Walter JK
Journal Of Pain And Symptom Management
2017
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.06.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.06.013</a>
Compassionate Deactivation of Pediatric Ventricular Assist Devices: A Review of 14 Cases
pediatric; end-of-life; palliative; heart failure; compassionate deactivation; ventricular assist
CONTEXT: Compassionate deactivation (CD) of ventricular assist device (VAD) support is a recognized option for children when the burden of therapy outweighs the benefits. OBJECTIVES: To describe the prevalence, indications, and outcomes of CD of children supported by VADs at the end of life. METHODS: Review of cases of CD at our institution between 2011-2020. To distinguish CD from other situations where VAD support is discontinued, patients were excluded from the study if they died during resuscitation (including ECMO), experienced brain or circulatory death prior to deactivation, or experienced a non-survivable brain injury likely to result in imminent death regardless of VAD status. RESULTS: Of 24 deaths on VAD, 14 (58%) were CD. Median age was 5.7 (IQR 0.6, 11.6) years; 6 (43%) had congenital heart disease; 4 (29%) were on a device that can be used outside of the hospital. CD occurred after 40 (IQR: 26, 75) days of support; none while active transplant candidates. CD discussions were initiated by the caregiver in 6 (43%) cases, with the remainder initiated by a medical provider. Reasons for CD were multifactorial, including end-organ injury, infection, and stroke. CD occurred with endotracheal extubation and/or discontinuation of inotropes in 12 (86%) cases, and death occurred within 10 (IQR: 4, 23) minutes of CD. CONCLUSIONS: CD is the mode of death in more than half of our VAD non-survivors and is pursued for reasons primarily related to noncardiac events. Caregivers and providers both initiate CD discussions. Ventilatory and inotropic support is often withdrawn at time of CD with ensuing death.
Hollander SA; Kaufman BD; Bui C; Gregori B; Murray JM; Sacks L; Ryan KR; Ma M; Rosenthal DN; Char D
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.01.125" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.125</a>
Compassionate Design: Applying Design Thinking Principles to Pediatric End-of-Life Care (FR452)
mourning; college; feasibility study; comfort; student; morality; conference abstract; injury; human; child; controlled study; terminal care; interview; staff; memory; intensive care unit; light; thinking; bath; illumination; job satisfaction; posthumous care; privacy
Objectives: *Discuss bereaved parent and staff perspectives regarding limitations for end-of-life care for children who die in intensive care units.*Explain the process of co-creation sessions, and identify opportunity concepts for improving end of life care in pediatric intensive care units.*Discuss multiple interventions to improve end-of-life care for children who die in intensive care units and their families. Approximately 70% of pediatric deaths at Cincinnati Children's (CCHMC) occur in an intensive care unit (ICU). Memories of the child's death critically impact the grieving process. Yet, ICU rooms are not designed for end-of-life (EOL) care. Space and privacy are limited; families may feel pressured to leave quickly after the child dies. Visitation policies limit family presence. Ritual bathing is difficult to accommodate. Some families desire to accompany the child through the basement to the morgue, a walk described as "unceremonious" and "stark". The Objectives of this study were to (i) understand EOL and post-mortem (PM) experiences of bereaved parents, how they relate to grief/mourning, (ii) understand EOL and PM experiences of staff, how they relate to job satisfaction/moral injury (iii) design new patient-centered, culturally sensitive processes and dedicated space for EOL and PM care. This project was a collaboration between CCHMC and a University of Cincinnati College of Design, Architecture, Art and Planning student design team, united through the Live Well Collaborative (LWC), a non-profit utilizing a design-thinking process to co-create innovations to improve health outcomes. LWC utilized human centered design in three phases: research, ideation and refinement. Research: LWC drew insights from a literature review and interviews with bereaved families and staff. The team designed an experience/journey map visually representing stakeholders' thoughts, experiences, and emotions throughout the EOL process. A feasibility/influence chart focused them on 3 improvement areas: privacy, transition from intensive care to legacy building, and parental control. Ideation: the team's co-creation sessions with parents and staff led to 7 opportunity concepts. Refinement: Concepts were tested and refined: room privacy lights, a comfort quilt, little reminders, announcement and spiritual lighting en route to the morgue, a remembrance garden and other spatial considerations. These were presented to the CCHMC team and other stakeholders for implementation.
Thienprayoon R; Lane J; Grossoehme D
Journal of Pain and Symptom Management
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.jpainsymman.2018.12.147" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.147</a>
Compassionate Extubation In The Home: It Takes A Team
Objectives
•Describe steps to take before starting the procedure to ensure comfort for the patient and family.
•Identify likely symptoms during and after the extubation and their management.
•Describe ways to support family and staff during and after the extubation.
Compassionate extubation or the removal of mechanical ventilation in the home requires the involvement of the entire hospice team to ensure both patient and family comfort. With the assistance of the hospice physician, nurse, social worker and chaplain, patients and families should not have to leave their home to come off ventilatory support.
We will present four cases of home discontinuation of support: two elderly female patients and two children. We did not have IV access in any of the cases but were able to anticipate and manage their symptoms using subcutaneous medications administered via a pump or medications administered via a gastric tube in one of the pediatric patients.
The process involved the whole team (ie, hospice physician, nurse case manager, social worker, and spiritual counselor) making visits to the home prior to and during the extubation. Also, the pharmacy department was essential in providing assistance in symptom management. These were emotionally difficult experiences for staff, as well as for families. We will describe ways to provide effective bereavement support for families as well as support for staff. Our hospice team was able to provide what these patients and families needed in a compassionate way and in an appropriate setting.
Review of the literature reveals little information on home extubation. We hope to provide information on positive experiences for patients, their families, and staff.
Brown E; Thorn C; Cowell D
Journal Of Pain And Symptom Management
2016
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DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.169
Conceptual models and the outcomes of caring
Conceptual models and the taxonomies associated with them are inherent tools of goal-directed activity. Conceptual models partition reality, discerning differences within a phenomenologic continuum; a process that is a fundamental requisite for measurement. This paper presents theoretical observations regarding the influence of conceptual models on goal-directed endeavors and explores specific implications for outcome measurement in palliative care. The dominant model of end-of-life care is the problem-based model of adult medicine. In clinical orientation, hospice and palliative care bear strong similarities to a pediatric and family medical model for early childhood care. This essay examines salient features of a conceptual model for palliative care that draws on a life-cycle or developmental model of human experience in critical transitions and explores application of this model to palliative care. [References: 18]
1999
Byock IR
Journal Of Pain And Symptom Management
1999
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/10.1016/s0885-3924(98)00139-0" target="_blank" rel="noreferrer">10.1016/s0885-3924(98)00139-0</a>
Concerns of Parents with Children Receiving Home-Based Pediatric Palliative Care
hospice; palliative care; parents; pediatrics; quality of life; symptom management
CONTEXT: Caring for a child who will die from a life-limiting illness is one of the most difficult experiences a parent may face. Pediatric palliative care (PPC) has grown as a specialty service to address the unique needs of children and families with serious illness. However, gaps remain between the needs of families in PPC and the support received. OBJECTIVE(S): The objective of this study was to explore the concerns of parents who have a child in home-based PPC. METHOD(S): Semi-structured interviews were conducted with 25 mothers and 10 fathers from 25 families shortly after their child's referral to home-based PPC. Children (57% male, Mage = 10.5 years, SD = 3.95, range = 4-18 years) had a range of diagnoses. Data were analyzed using inductive content analysis. RESULT(S): Parents' concerns clustered into four main themes: (1) ensuring that their child's remaining days were spent living well physically, emotionally, and socially; (2) uncertainty regarding their child's diagnosis, prognosis, and treatments; (3) their child's death (e.g., the process of dying and when it will occur); and (4) the family, including the impact of the child's illness and death on siblings and wanting to cherish as much time together with family as possible. CONCLUSION(S): Parents of children receiving home-based PPC expressed concerns across a range of domains, both about their seriously ill child and the broader family. These results highlight salient worries among parents of children in PPC, and point to critical areas for intervention for seriously ill children and the broader family. Copyright © 2020. Published by Elsevier Inc.
Tutelman PR; Lipak KG; Adewumi A; Fults MZ; Humphrey LM; Gerhardt CA
Journal of Pain and Symptom Management
2020
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.jpainsymman.2020.09.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.09.007</a>
Congruent Communication: Addressing culture and care for a seriously ill Rohingya infant
Pediatric Palliative Care (PPC); Pediatric Ethics; Cross-Cultural Communication; Rohingya; Culture; Rohingya culture; Cross-Cultural Communication; Pediatric Ethics; Pediatric Palliative Care (PPC)
Pediatric palliative care teams seek to collaboratively promote the quality of life for children with serious medical illness in the context of the values expressed by the patient and family. Especially for infants with high medical fragility, shared decision making can be a complex task that often requires flexibility to respond to the clinical circumstances at hand, as well as contextualization within the family culture. In this paper, we present the case of an infant with a severe congenital brain malformation who was born in an American hospital to a Rohingya-speaking, Burmese family whose care preferences seemed to oscillate between comfort-focused and life-prolonging without clear acknowledgement of the consequences of shifting between treatment plans. Discussion of this case helps to illustrate the cultural factors, ethical challenges, and systems-level issues that can arise for medical teams in seeking to promote patient-centered care that respects family values while also honoring the principle of nonmaleficience.
Treat L; Macauley R
Journal of Pain and Symptom Management
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/%2010.1016/j.jpainsymman.2022.11.028" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2022.11.028</a>
Continued Challenges Accessing Pediatric Hospice Services
Child; Humans; Hospices; Hospice Care; Palliative Care
Aglio T; Autrey AK; Shostrom VK; Weaver MS; Kaye EC; Lindley LC
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.08.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.08.009</a>
Cost Analysis And Policy Implications Of A Pediatric Palliative Care Program.
Palliative Concurrent Care Cost Pediatric Policy
CONTEXT:
In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy.
OBJECTIVES:
We assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay).
METHODS:
A pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data.
RESULTS:
The average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program.
CONCLUSION:
Through the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere.
Gans D; Hadler MW; Chen X; Wu SH; Dimand R; Abramson JM; Ferrell B; Diamant AL; Kominski GF
Journal Of Pain And Symptom Management
2016
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).
COVID-19: Impact on Pediatric Palliative Care
Covid-19; Palliative Care; Pediatrics
Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objective(s): To explore the impact of the COVID-19 pandemic and lockdowns on this population. Method(s): Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. Result(s): COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusion(s): Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays. Copyright © 2022 American Academy of Hospice and Palliative Medicine
Scott HM; Coombes L; Braybrook D; Roach A; Hardardottir D; Bristowe K; Ellis-Smith C; Higginson I; Gao W; Bluebond-Langner M; Farsides B; Murtagh FE; Fraser LK; Harding R
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.02.330" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.330</a>
Creating a "Journey Map" for Children with Severe Neurologic Impairment: A Collaboration Between Private and Academic Pediatric Palliative Care, Nonprofit Organizations, and Parents. (FR201B)
Palliative Care
Outcomes: 1. Describe how design thinking methodology can be applied to palliative care problems to create novel solutions and products for patients and families 2. Identify the stages of life for a patient with severe neurologic impairment and parental needs at all stages Design thinking methodology is powered by empathizing with patient/family experiences to articulate meaningful problems, distill themes to ideate solutions, and frame and design plans to implement solutions. In 2020, the palliative care team at Cincinnati Children's Hospital Medical Center (CCHMC) worked with a team from the Live Well Collaborative (LWC) to apply design thinking methodology to pediatric palliative care. The LWC is a nonprofit organization whose purpose is to apply design thinking methodology to co-create innovations aimed at improving health. Interviews of palliative care patients and their caregivers revealed an unmet need for patient- and family-centered educational tools to help visualize disease trajectory, improve patient and parent agency with medical recommendations, and improve quality of life and future planning. In response, a web-based Journey Map application was created. In 2021, the LWC team focused the Journey Map tool for use by families of children with severe neurologic impairment (SNI) that 1) maps points in the trajectory of a patient with SNI across their lifespan, 2) visualizes and explains the medical stages of SNI, 3) focuses on parental psychosocial support and needs, and 4) infuses the palliative care voice and concepts throughout. As the SNI Journey Map was created, CCHMC partnered with Courageous Parents Network, a nonprofit organization dedicated to supporting parents of children with serious illness, and Dr. Julie Hauer, a pediatric palliative care physician specializing in the care of children with SNI, to ensure that the Journey Map tool would be truly parent-focused and reach the greatest audience of parents and clinicians nationally. The Journey Map tool is the result of an innovative collaboration between academic and private palliative care clinicians, local and national nonprofit organizations, and parents. This unique tool will be hosted on the Courageous Parents Network website for perpetuity.
Thienprayoon R; Lord BT; Siedman J; Hauer J
Journal of Pain and Symptom Management
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/j.jpainsymman.2022.12.064" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.064</a>
Decision Making Process Of Parents With Seriously Ill Children At The Hospital
Objectives
•
Identify the core category for parents of a seriously ill child about the decision making process at the hospital.
•
Identify parents' preferences when they have to make a decision on behalf of their seriously ill child.
Original Research Background
Changes related to the decision making of parents of seriously ill children at the hospital have been reported in the literature, emphasizing the active role of parents and professionals in sharing information. Professionals are unprepared to deal with the dying process, and parental involvement in decisions is important for the care and future of the family.
Research Objectives
This study aimed to understand the experience of parents of seriously ill children regarding the decision-making process in the hospital.
Methods
This is a qualitative study using Symbolic Interactionism and Grounded Theory as theoretical and methodological framework. Data collection was performed in a pediatric hospital in São Paulo, through active observation, hospital records and semi-structured interviews with 10 parents who had their children hospitalized with a life-threatening condition during the data collection period. The interviews were recorded and transcribed. Data was analyzed following the procedures of the Grounded Theory.
Results
After the theoretical saturation had been reached, it was possible to propose a theoretical model to explain the decision-making process of parents by the core category: Being good for my child is being good to me, and the following categories: being scary, recognizing that everything is being done for the child, needing information, deciding about the participation in decision-making, having faith and hope, and valuing a relationship of trust with health providers.
Conclusion
The results indicate that parents’ experience in decision-making is related to individual preferences and the relationship with the healthcare team, which allow them to trust some decisions to physicians and to play an active role as their children’s s advocates.
Implications for Research, Policy or Practice
Ensuring family care, from what parents consider good for their child, allows nurses to guarantee the active role of parents in the decision-making process.
Misko M; Bousso R; Santos MR
Journal Of Pain And Symptom Management
2016
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http://doi.org/10.1016/j.jpainsymman.2015.12.062
Defining Core Competencies and a Call to Action: Dissecting and Embracing the Crucial and Multifaceted Social Work Role in Pediatric Palliative Care
Education; Interdisciplinary; Palliative care; Pediatric; Social work
While social workers are a well-established, part of the pediatric palliative care team, this manuscript presents the first published definition of the core competencies of a pediatric palliative care social worker. National experts in the field, guided by the pediatric special interest group of the Social Work Hospice and Palliative Network (SWHPN), worked together to articulate, and define core competencies. As the field of pediatric palliative care (PPC) continues to grow and develop, these competencies will help to better delineate the specific skill base of social workers in PPC. Such competencies may also create clearer role definition for emerging PPC social workers, guide training, clinical supervision, and mentorship in the field. They can also support improved interdisciplinary practice by assisting interprofessional colleagues in understanding and articulating the critical role of social workers as part of the PPC team. Additionally, such competencies may contribute to the growing development of role descriptions necessary for the hiring of social workers onto growing PPC teams, while also providing a framework for the creation and support of curricula centered on the subspeciality education and training of the next generation of PPC social workers. Copyright © 2022 American Academy of Hospice and Palliative Medicine
Jonas D; Patneaude A; Purol N; Scanlon C; Remke S
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.02.341" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.341</a>
Defining the Boundaries of Palliative Care in Pediatric Oncology
child; human; palliative therapy; controlled study; female; major clinical study; male; article; childhood cancer; terminal care; quality of life; interview; comfort; cancer patient; content analysis; skill; mental health; nurse practitioner; genetic transcription; pediatric oncologist; standardization
Context: Although palliative care (PC) continues to be integrated into pediatric oncological care, only a minority of patients with cancer receive a formal PC consult.
Cuviello A; Raisanen J C; Donohue P K; Wiener L; Boss R D
Journal of Pain and Symptom Management
2020
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.jpainsymman.2019.11.022" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.11.022</a>
Definitely Mixed Feelings: The Effect of COVID-19 on Bereavement in Parents of Children Who Died of Cancer
bereavement; Bereavement; Female; Humans; Male; Parents/psychology; Attitude to Death; Adaptation Psychological; grief; Attitude to Death; pediatric cancer; bereaved parents; Neoplasms; Neoplasms; Adaptation Psychological/physiology; Parents -- Psychosocial Factors; Disease Outbreaks; Pandemics; Covid-19; Bereavement; Coronavirus Infections/psychology; Pneumonia Viral/psychology; Arthritis Impact Measurement Scales; Coronavirus Infections -- Psychosocial Factors; Pneumonia Viral -- Psychosocial Factors; Ways of Coping Questionnaire
Context: Coronavirus disease 2019 (COVID-19) has impacted most elements of daily life, including the provision of support after a child's death and the experience of parental bereavement.Objectives: This study aims to examine ways in which COVID-19 has affected the bereavement experiences of parents whose children died of cancer before the pandemic.Methods: Parents who participated in a survey-based study examining the early grief experience were invited to complete a semistructured interview. During the interview, which focused on examining the current support for parents and other family members within the first several years after the child's death, participants were asked how COVID-19 has impacted their life and bereavement.Results: Fifteen of 33 eligible parents completed the interview; 14 were white and non-Hispanic, five were males. Parents participated an average of 19 (range 12-34) months after their child's death. COVID-19 was addressed in 13 interviews. Eleven codes were used to describe interview segments; the most commonly used codes were change in support, no effect, familiarity with uncertainty/ability to cope, and change in contact with care/research team.Conclusion: Parents identified multiple and variable ways-both positive, negative, and neutral-how COVID-19 has affected their bereavement. Many parents commented on feeling more isolated because of the inability to connect with family or attend in-person support groups, whereas others acknowledged their experience has made them uniquely positioned to cope with the uncertainty of the current situation. Clinicians must find innovative ways to connect with and support bereaved parents during this unique time.
Helton G; Wolfe J; Snaman JM
Journal of Pain and Symptom Management
2020
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<a href="http://doi.org/10.1016/j.jpainsymman.2020.08.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.08.035</a>
Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa
Pediatric Palliative Care; Childhood Cancer Clinical Providers; Delphi Method; low and middle income country; Pediatric Palliative Care Assessment
CONTEXT: In sub-Saharan Africa there is no standardized approach to pediatric palliative care assessment. Because of this, there is a critical demand for evidence-based assessment tools that identify specialized needs of children and their families requiring palliative care in developing countries. OBJECTIVES: To develop a standardized approach to pediatric palliative care (PPC) assessment that includes an individualized plan of care for use in sub-Saharan Africa. METHODS: A Delphi method approach used five rounds to explore core elements that define the essential assessment attributes mandatory for providing excellence in PPC. Using the Delphi method, consensus from 11 PPC experts was obtained during four Delphi rounds regarding the most important questions to include in a PPC assessment tool and plan of care. During the final Delphi round 5, expert consensus was confirmed in a separate group of 36 childhood cancer/palliative care clinical providers. RESULTS: Five core elements were developed as the foundation for a PPC assessment. A symptom assessment tool was developed that includes 15 symptoms that PPC experts agreed occurred more than 65% of the time in their patients. CONCLUSION: The Delphi method was an effective tool to develop a consensus on a PPC assessment tool to use with children and their families in sub-Saharan Africa. This standardized approach will enable collection of data to drive outcomes and research. Key Message. The need for a culturally appropriate PPC assessment tool is crucial to promoting excellence in palliative care around the globe. This tool will have a tremendous impact on the care of children and their families in sub-Saharan Africa.
Chinyundo K; Casas J; Bank R; Abenawe C; Gaolebale B; Nakirulu A; Maifale-Mburu G; Hesselgrave J; Butia M; Bakulumpagi D; Nassanga I; Higgins J; Hockenberry M
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2022.02.021" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.021</a>
Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care
hospice; Needs Assessment; Only Child; Palliative Care; pediatric palliative care; Psychometrics; Terminal Care
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF). Parents answered questions about demographics and the experience of completing the PCNeeds. Internal scale reliability was measured with Cronbach's alpha. Validity was assessed by correlating the PCNeeds total and subscale scores with the WHOQOL-BREF subscales. Additional respondent perceptions were obtained via written comments and analyzed using content analysis. RESULTS: The 93 respondents were predominantly female (n=69, 74%); white (n=79, 85%); college graduates (n=71, 76%); and married or partnered (n=75, 81%). Internal reliability was acceptable (Cronbach's alpha=.83), and validity correlations with the WHOQOL-BREF subscales were consistent with theoretical expectations (moderate negative correlations ranging from -.36 to -.51). The most frequently cited need not addressed by our survey was sibling impact (n=17, 18%). Twelve parents (13%) indicated that no content was missing. The least met needs were financial impact, family impact, and the child's physical problems besides pain. Sixty-eight percent of parents (n=63) rated completion of the survey as "easy" or "very easy." CONCLUSION: Initial psychometric analysis of the PCNeeds is encouraging, but further study of reliability and validity with more diverse respondents is needed.
Donnelly JP; Downing K; Cloen J; Fragen P; Gupton AW; Misasi J; Michelson K
Journal Of Pain And Symptom Management
2017
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<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.484" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.12.484</a>
Development of a Pediatric Palliative Care Curriculum and Dissemination Model: Education in Palliative and End-of-Life Care (EPEC) Pediatrics
Education; Curriculum; Dissemination; Pediatric Palliative Care; post-graduate teaching; Train-the-Trainer
CONTEXT: Most children living and dying with serious illnesses experience high burden of distressing symptoms. Many seriously ill children and their families do not have access to subspecialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. Lack of PPC education appears to be a significant barrier to PPC implementation. OBJECTIVES: Description of the development and dissemination of Education in Palliative and End-of-Life Care (EPEC)-Pediatrics. METHODS: Funded through a US$1.6 million National Institutes of Health / National Cancer Institute grant 2010-2017, this 24-module curriculum was designed to teach primary palliative care. The target audience included interprofessional pediatric hematology/oncology providers and all other clinicians caring for seriously ill children. RESULTS: The curriculum is delivered in a combination of online learning and in-person, face-to-face sessions. Additionally, a one-day Professional Development Workshop (PDW) was developed to teach EPEC-Pediatrics graduates to teach future "Trainers," thus becoming "Master Facilitators". Between 2012-May 2019 a total of 867 EPEC-Pediatric Trainers and 75 Master Facilitators from 58 countries participated in 17 Become an EPEC-Pediatrics-Trainer conferences and three PDWs. The curriculum has also been adapted for large-scale dissemination across Canada and Latin-America, with translation to French and Spanish. PARTICIPANTS: overwhelmingly report improvements in their PPC knowledge, attitudes, and skills, including teaching. Participants subsequently anticipated improvements in patient care for children with serious illness at their home institutions. CONCLUSION: EPEC-Pediatrics has developed into the most comprehensive PPC curriculum. It is highly adaptable for local settings, became self-sustaining and six conferences are offered around the world in 2019.
Friedrichsdorf S J; Remke S; Hauser J; Foster L; Postier A; Kolste A; Wolfe J
Journal of Pain and Symptom Management
2019
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<a href="http://doi.org/10.1016/j.jpainsymman.2019.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.06.008</a>
Development of the paediatric pain profile: role of video analysis and saliva cortisol in validating a tool to assess pain in children with severe neurological disability
Child; Female; Humans; Male; Reproducibility of Results; Child Behavior; adolescent; Preschool; Biomarkers of Pain; Hydrocortisone/metabolism; Nervous System Diseases/complications/metabolism/psychology; Pain Measurement/methods; Pain/etiology/metabolism/psychology; Saliva/metabolism; Videotape Recording
The Paediatric Pain Profile (PPP) is a 20-item behavior-rating scale designed to assess pain in children with severe to profound neurological impairment. Three raters independently used the PPP to rate behavior of 29 children (mean age 9.6, SD 5.8) filmed during everyday morning activities. The validation process included assessment of interrater reliability and exploration of the relationship of PPP scores with saliva cortisol concentration. There was substantial agreement between raters. The PPP showed strong association with global pain assessments and differentiated between preselected high- and low-pain groups. PPP score showed moderate correlation with saliva cortisol concentration, but a single child explained the strength of the relationship and overall, saliva cortisol concentrations appeared low. The data provide additional evidence that the PPP is a reliable and valid instrument for pain assessment in neurologically impaired children. Cortisol levels are not a useful criterion for pain in this population and further study of cortisol response to stress/pain in children with severe neurological impairments is needed.
2007
Hunt A; Wisbeach A; Seers K; Goldman A; Crichton N; Perry L; Mastroyannopoulou K
Journal Of Pain And Symptom Management
2007
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2006.08.011" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2006.08.011</a>
Development of the World Health Organization Guidelines on Cancer Pain Relief and Palliative Care in Children
Child; Practice Guidelines; Human; Neoplasms/complications; Pain/etiology/therapy; Palliative Care/methods; World Health Organization
Assess pain regularly throughout the course of treatment. Follow the WHO Analgesic Ladder for selecting pain-relief drugs, that is, a stepwise approach to analgesic management, where a child's pain severity determines the level of analgesics. Use practical cognitive, behavioral, physical, and supportive therapies, combined with appropriate drug treatment. Administer adequate analgesics doses "by the clock," that is, at regular times, not PRN. Use oral routes for administering analgesics, and avoid painful routes of administration, whenever possible. Administer a sufficient analgesic dose to allow children to sleep throughout the night. Anticipate and treat side effects aggressively.
1996
McGrath PA
Journal Of Pain And Symptom Management
1996
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
Difficult Conversations: Discussing Prognosis With Children With Cystic Fibrosis.
Objectives
Describe how and when individuals with cystic
fibrosis learn about prognosis with a life-limiting
disease, specifically its progressive nature and
the median life expectancy.
Describe the emotional impact of initial communication
about prognosis with cystic fibrosis, a
life-limiting genetic disease.
Acquire new language for initiating conversation
about prognosis with individuals with a lifelimiting
disease as well as a general age-based
timeline for when to initiate prognosis
conversations.
Original Research Background. No published
studies address how patients with cystic fibrosis (CF)
receive and perceive education about disease prognosis.
Related research suggests a need for more
information and strategies for coping with this
burdensome disease and its limited life expectancy.
Research Objectives. To describe patient, parent,
and provider experiences with communication about
prognosis and the emotional impact of initial communication
and to elicit recommendations for improving
communication.
Methods. Semi-structured interviews were conducted
with 18-25-year-olds with CF, parents of the 18-25-yearolds,
and CF care providers at two CF centers. Thematic
analysis of responses was conducted by the
research team.
Results. Thirteen patients, eight parents, and seven
CF care providers (five physicians, one nurse, and
one social worker) participated. More than half of patients
(54%) learned about prognosis independently,
not from a parent or provider. Fear and sadness
were common emotional responses. All groups recommended
in-person, individualized communication,
describing this discussion as a ‘‘milestone’’ in disease
self-management. Most patients (77%) and parents
(86%) felt a provider should initiate communication
about prognosis. Providers described uncertainty
about when to address prognosis and how to instill
hope while sharing information. Limited time, lack
of confidence in addressing this topic, waiting for patient
cues, and protecting parents were the top barriers
to communication. While providers expressed
concern about affecting mood and adherence, most
patients reported that learning about prognosis did
not negatively affect their outlook (79%) and that effects
on adherence were often positive.
Conclusion. Patients with CF and their parents and
providers acknowledge challenges communicating
about prognosis. Patients desire earlier, individualized,
in-person communication. Standardized provider
prompts to initiate communication about
prognosis would ensure all patients are appropriately
aware of prognosis. Age-appropriate educational materials
could be used to facilitate conversations between
patients, families, and providers.
Implications for Research, Policy, and
Practice. Though CF-focused, the themes elicited
from this research can be applied to communicating
prognosis in other life-limiting childhood illnesses.
Saunders J; Prieur M; Walter M; Borowitz D; Dellon E
Journal Of Pain And Symptom Management
2016
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).
DOI: http://dx.doi.org/10.1016/j.jpainsymman.2015.12.250
Do hospital-based palliative teams improve care for patients or families at the end of life?
Humans; Outcome and Process Assessment (Health Care); Palliative Care; Family; Hospitals; patient care team; Quality of Health Care; Terminal Care
To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the sample's standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice. [References: 66]
2002
Higginson IJ; Finlay I; Goodwin DM; Cook AM; Hood K; Edwards AG; Douglas HR; Norman CE
Journal Of Pain And Symptom Management
2002
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(01)00406-7" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00406-7</a>
Does palliative care improve quality? A survey of bereaved family members
Female; Humans; Male; Terminal Care; Family; Adult; Data Collection; Aged; Middle Aged; Treatment Outcome; New York; adolescent; 80 and over; bereavement; Palliative Care/statistics & numerical data; Patient Satisfaction/statistics & numerical data; Health Care; Quality Assurance; Pain/epidemiology/nursing
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.
2008
Gelfman LP; Meier DE; Morrison RS
Journal Of Pain And Symptom Management
2008
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2007.09.008" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2007.09.008</a>
Drug Abuse and Diversion in Pediatric Palliative Care-What You Should Know, What You Can Do, and What You Can Learn from Our Multisite Experience
Health Care Sciences & Services
Background Prescription drug abuse is an epidemic in the US, leading to increased government oversight in opioid prescribing. The issue becomes more complicated when minor children are involved. One pediatric palliative care team found that of 62 consecutive children and young adults who were stratified for opioid misuse, >60% were at either moderate or high risk. In 6 cases, the patient was weaned from opioids or the team stopped prescribing due to diversion or misuse behaviors. Thus safe opioid prescribing should be a priority for all pediatric palliative care (PPC) teams. Discussion Using a case-based discussion, we will review pediatric-specific opioid abuse data and best evidence around safe opioid prescribing. We will discuss the safe-opioid prescribing “opioid bundle” developed by the Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center and how it has been rolled out at two additional children's hospitals. We will talk in-depth about caring for high risk patients, highlighting cases of confirmed diversion and the resulting de-prescribing. We will include cases of minor children with diversion by adult caregivers as well as adolescent and young adult patients participating in drug diversion. Conclusions Given the high risk of drug misuse, abuse and diversion, safe opioid prescribing is necessary for all PPC teams. The “opioid bundle” created by PACT is a practical method for PPC teams nationwide to employ in the care of their patients.
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).
Miller E; Humphrey L; Thienprayoon R
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.037" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.037</a>
Economic Impact of Advanced Pediatric Cancer on Families
Palliative Care; Pediatric; oncology; Disparities; financial; poverty
CONTEXT: Despite emerging evidence of substantial financial distress in families of children with complex illness, little is known about economic hardship in families of children with advanced cancer. OBJECTIVES: To describe perceived financial hardship, work disruptions, income losses, and associated economic impact in families of children with advanced cancer stratified by federal poverty level (FPL). METHODS: Cross-sectional survey of 86 parents of children with progressive, recurrent, or nonresponsive cancer at three children's hospitals. Seventy-one families with complete income data (82%) are included in this analysis. RESULTS: Parental work disruptions were prevalent across all income levels, with 67 (94%) families reporting some disruption. At least one parent quit a job because of the child's illness in 29 (42%) families. Nineteen (27%) families described their child's illness as a great economic hardship. Income losses because of work disruptions were substantial for all families; families at or below 200% FPL, however, were disproportionately affected. Six (50%) of the poorest families lost more than 40% of their annual income as compared with two (5%) of the wealthiest families (P = 0.006). As a result of income losses, nine (15%) previously nonpoor families fell from above to below 200% FPL. CONCLUSION: The economic impact of pediatric advanced cancer on families is significant at all income levels, although poorer families suffer disproportionate losses. Development of ameliorative intervention strategies is warranted.
Bona K; Dussel V; Orellana L; Kang T; Geyer R; Feudtner C; Wolfe J
Journal Of Pain And Symptom Management
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/10.1016/j.jpainsymman.2013.04.003" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.04.003</a>
Education in Palliative and End-of-Life Care-Pediatrics: Curriculum use and dissemination
palliative care; education; survey; Pediatric; training; curriculum
CONTEXT: The majority of seriously ill children do not have access to specialist pediatric palliative care (PPC) services nor to clinicians trained in primary PPC. The Education in Palliative and End-of-Life Care (EPEC)-Pediatrics curriculum and dissemination project was created in 2011 in response to this widespread education and training need. Since its implementation, EPEC-Pediatrics has evolved and has been disseminated worldwide. OBJECTIVES: Assessment of past EPEC-Pediatrics participants' ("Trainers") self-reported PPC knowledge, attitudes, and skills; use of the curriculum in teaching; and feedback about the program's utility and future direction. METHODS: 2011 - 2019 survey of EPEC-Pediatrics past conference participants, using descriptive and content analyses. RESULTS: 172/786 (22% response rate) EPEC-Pediatrics past participants from 59 countries across 6 continents completed the survey. Trainers, including Master Facilitators (MFs), used the curriculum mostly to teach interdisciplinary clinicians and reported improvement in teaching ability as well as in attitude, knowledge, and skills (AKS) in two core domains of PPC: communication and pain and symptom management. The most frequently taught modules were about multimodal management of distressing symptoms. Trainers suggested adding new content to the current curriculum and further expansion in low-medium income countries. Most (71%) reported improvements in the clinical care of children with serious illnesses at their own institutions. CONCLUSION: EPEC-Pediatrics is a successful curriculum and dissemination project that improves participants' self-reported teaching skills and AKS's in many PPC core domains. Participating clinicians not only taught and disseminated the curriculum content, they also reported improvement in the clinical care of children with serious illness.
Postier AC; Wolfe J; Hauser J; Remke SS; Baker JN; Kolste A; Dussel V; Bernadá M; Widger K; Rapoport A; Drake R; Chong PH; Friedrichsdorf SJ
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.11.017" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.11.017</a>
Effect of Permanent Feeding Tube Placement on Healthcare Utilization Among Children with Neurologic Impairment (TH340A)
Child; Enteral Nutrition; Only Child; child
Nelson K; Rosella L; Mahant S; Guttmann A; Cohen E
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2017.12.041" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.041</a>
Effects of high dose opioids and sedatives on survival in terminally ill cancer patients
Female; Humans; Male; Palliative Care; Aged; Middle Aged; Survival Analysis; Inpatients; Forecasting; Dose-Response Relationship; Drug; Neoplasms/drug therapy; Critical Illness/therapy; Hypnotics and Sedatives/administration & dosage/adverse effects/therapeutic use; Narcotics/administration & dosage/adverse effects/therapeutic use
Concerns that high dose opioids and sedatives might shorten patient survival could contribute to insufficient symptom alleviation for terminally ill cancer patients. To examine the effects of opioids and sedatives prescribed in the final 48 hours on patient survival, a re-analysis of the prospectively collected data was performed on 209 hospice inpatients. Patient characteristics and clinical symptoms were prospectively recorded, and information about the use of opioids and sedatives in the last two days was collected by a chart review. Opioids were prescribed in 82% of the patients, with a median dose of 80 mg oral morphine equivalent (OME)/48 hours. Sixty percent received some sedative medications, mainly haloperidol (43% of total sample, 7.5 mg/48 hours), midazolam (23%, 23mg/48 hours), and hydroxyzine (15%, 50 mg/48 hours). There were no significant differences in survival between the patients who received different doses of opioids ( or =600 mg OME/48 hours) and of benzodiazepines (0, 1--59, and > or =60 mg parental midazolam equivalent/48 hours). Also, the survival of patients with haloperidol, hydroxyzine, and other sedative medications did not differ from those without. Furthermore, an addition of use of opioids and sedatives in the final 48 hours into the multiple regression model for survival prediction achieved no significant increase in predictability. In conclusion, opioids and sedatives used for symptom control in the last days are not associated with patient survival. They are safe and useful medications to palliate severe distress in the terminal stage of cancer when administered with a low initial dosage and adequate titration.
2001
Morita T; Tsunoda J; Inoue S; Chihara S
Journal Of Pain And Symptom Management
2001
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/10.1016/s0885-3924(01)00258-5" target="_blank" rel="noreferrer">10.1016/s0885-3924(01)00258-5</a>
Emerging Collaboration Between Palliative Care Specialists and Mechanical Circulatory Support Teams: A Qualitative Study
assisted circulation; medical specialist; palliative therapy; Adult; advance care planning; Article; Child; Clinical Article; decision making; Family; Heart-Assist Devices; heart failure; hospice care; Human; Medicaid; Medicare; Palliative Care; patient referral; Perception; Qualitative Research; Self-Help Devices; semi structured interview; telephone interview; ventricular assist device
Context Despite national requirements mandating collaboration between palliative care specialists and mechanical circulatory support (MCS) teams at institutions that place destination therapy ventricular assist devices, little is known about the nature of those collaborations or outcomes for patients and families. Objectives To assess how Centers for Medicare & Medicaid Services' regulations have changed collaboration between palliative care and MCS teams and how this collaboration is perceived by MCS team members. Methods After obtaining verbal consent, members of MCS teams were interviewed using semistructured telephone interviews. Interviews were transcribed, and content was coded and analyzed using qualitative methods. Results Models for collaboration varied widely between institutions. Several expected themes emerged from interviews: 1) improvements over time in the relationship between palliative care specialists and MCS teams, 2) palliative care specialists as facilitators of advance care planning, and 3) referral to hospice and ventricular assist device deactivation as specific areas for collaboration. Several unexpected themes also emerged: 4) the emergence of dedicated heart failure palliative care teams, 5) palliative care specialists as impartial voices in decision making, 6) palliative care specialists as extra support for MCS team members, and 7) the perception of improved patient and family experiences with palliative care team exposure. Conclusion Although the structure of collaboration varies between institutions, collaboration between MCS teams and palliative care specialists is increasing and often preceded the Centers for Medicare & Medicaid Services requirement. Overall impressions of palliative care specialists are highly positive, with perceptions of improved patient and family experience and decreased burden on MCS team members.
Sagin A; Kirkpatrick JN; Pisani BA; Fahlberg BB; Sundlof AL; O'Connor NR
Journal Of Pain And Symptom Management
2016
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.jpainsymman.2016.03.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2016.03.017</a>