“when I Heard Palliative Care, I Heard Hospice”: Parents’ Experiences With Pediatric Palliative Care Consultation In The Neonatal Intensive Care Unit
Objectives
Describe the role of pediatric palliative care
consultation in the neonatal intensive care unit
(NICU) setting.
Describe parent experiences with a pediatric palliative
care consultation in the NICU and implications
for practice and further research efforts.
Background. In 2013, 23,440 infants died in the US;
most deaths occurred in the first 28 days of life. Pediatric
palliative care consultation (PPC) in the neonatal
intensive care unit (NICU) may provide much needed
support for these infants and parents. Early in the critical
illness trajectory, PPC may assist with parental decision-making.
However, there is a paucity of research
on parental perceptions of PPC and why these services
may be underused in the NICU until death is
imminent.
Research Objectives. To describe parents’ experiences
with a PPC prior to their infant’s death in the
NICU.
Methods. In this descriptive qualitative study, we conducted
individual audio-recorded, semi-structured interviews
with a convenience sample of parents
(N¼10) from a children’s hospital in the Southeastern
US approximately four years after infant death. Upon
reaching thematic saturation, verbatim transcribed interviews
were verified for accuracy, coded, and content
analyzed using qualitative descriptive methods. We
used member-checking to enhance trustworthiness
of the findings.
Results. Six of 10 parents had formal PPC. Most PPC
occurred near the end of life, and parents’ reported
‘‘negative connotations’’ associated with the consult
initially, such as losing hope of curative treatment.
However, all parents who received PPC would recommend
this service to other parents and found PPC as
a helpful layer of support. Specific positive experiences
included: feeling like they had an extra advocate,
a non-judgmental sounding board, and
‘‘another support branch.’’
Conclusions. PPC is often not considered until very
near death, and parents’ identified PPC as a marker
of transition from curative to end-of-life care. Nevertheless,
parents found PPC to be valuable and would
recommend it to other parents.
Implications for Research, Policy or
Practice. Further research is necessary to understand
the factors that influence parental perceptions of PPC
and how to identify opportunities for earlier PPC integration
in the NICU.
Currie E; Bakitas M; Perna S; Christian B; Meneses K
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.2015.12.051
"I Could Never Prepare for Something Like the Death of My Own Child": Parental Perspectives on Preparedness at End of Life for Children With Complex Chronic Conditions
beareavement; children; chronic disease; disability; end of life; palliative care
Context: Children with complex chronic conditions (CCCs) have high morbidity and mortality. While these children often receive palliative care services, little is known about parental preparedness for their child's end of life (EOL). Objective(s): This study aimed to elucidate aspects important to preparedness at EOL among bereaved parents of children with CCCs. Method(s): In this cross-sectional study, parents of children who received care at Boston Children's Hospital and died between 2006 and 2015 completed 21 open-response items querying communication, decision-making, and EOL experiences as part of the Survey of Caring for Children with CCCs. Additional demographic data were extracted from the child's medical record. An iterative multistage thematic analysis of responses was utilized to identify key contexts, conditions, and themes pertaining to preparedness. Result(s): One hundred ten of 114 parents responded to open-ended items; 63% (n = 69) had children with congenital or central nervous system progressive primary conditions for a median of 7.5 years (IQR 0.8-18.1) before death. Seventy-one percent (n = 78/110) had palliative care involvement and 65% (n = 69/106) completed advance care planning. Parents described preparedness as a complex concept that extended beyond "readiness" for their child's death. Three domains emerged that contributed to parents' lack of preparedness: 1) chronic illness experiences; 2) pretense of preparedness; and 3) circumstances and emotions surrounding their child's death. Conclusion(s): Most bereaved parents of children with CCCs described feeling unprepared for their child's EOL, despite palliative care and advance care planning, suggesting preparedness is a nuanced concept beyond "readiness." More research is needed to identify supportive elements among parents facing their child's EOL. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Bogetz J F; Revette A; Rosenberg A R; DeCourcey 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.2020.06.035" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.06.035</a>
"Let's bring her home first." Patient Characteristics and Place of Death in Specialized Pediatric Palliative Home Care
Act Categories; Diagnosis; Home Care; Nervous System; Place Of Death; Specialized Pediatric Palliative Care
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death. METHODS: Retrospective single center chart analysis of 212 consecutive patients on SPPHC (2009-2015). RESULTS: Main International Statistical Classification of Diseases and Related Health Problems, 10th Revision groups were nervous system, congenital abnormalities, neoplasia, and metabolic disease, reflecting the mortality statistics for patients one to 20 years. Thirty-six percent of patients were assigned to ACT-3, 34% to ACT-4, 26% to ACT-1, and 4% to ACT-2. ACT-1 patients mostly needed high-intensity care for short durations, ACT-4 patients showed long survival times with mostly intermittent care. Seventy-five percent of patients showed nervous system involvement. Eighty-four percent died at home, 12% in hospital, and 4% in a hospice, with 96% dying at their preferred place. CONCLUSION: Our data on SPPHC show 1) significant differences between Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health groups in terms of care needs and survival; 2) a high prevalence of children with neurological problems; and 3) a large majority of children dying at home. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Bender HU; Riester MB; Borasio GD; Fuhrer M
Journal Of Pain And Symptom Management
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="https://doi.org/10.1016/j.jpainsymman.2017.04.006" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2017.04.006</a>
"Scared of Palliative ": Perspectives on Palliative Care from Pediatric Nurses Caring for Children with Progressive Life Shortening Illnesses on Acute Care Units
Objectives: Children with Progressive Life Shortening Illnesses (PLSIs) are children whose lives are shrouded with uncertainty as they live with conditions for which cure, and of ten even effective treatments, is not available. Nevertheless, the number of children with PLSIs who require long-term management of their disease condition in hospital is steadily increasing. Accordingly, pediatric nurses on general hospital units frequently care for children with PLSIs and are intensely engagedin controlling pain and managing complex symptoms such as respiratory support, feeding issues, and seizure management. Despite pediatric nurses carrying out the essential aspects of palliative care, specifically pain and symptom management, they typically do not identify their practice as being influenced by the tenets of palliative care and even described feeling "scared of palliative. " Methods: Qualitative data was collected through individual interviews with pediatric acute care nurses, the transcripts of which were analyzed according to the interpretive methodology of philosophical hermeneutics. Results: Participants revealed a limited understanding of the scope and breath of pediatric palliative care. Participants avoided using the language of palliative care in their discussion of their work with children with PLSIs. When they did use the language of palliative care, it was taken up in the sense of end-of-life care: "she was made palliative that day. " Furthermore, participants often deferred to the palliative care consult team when asked about how they understood the role of palliative care in their practice. Conclusions: Nurses working with children with PLSIs and their families could benefit from support and empowerment in their work through an integrative and creative approach with the palliative care consult team. This would include involvement of acute care nurses in decision making conversations and the implementation of an Advanced Practice Nursing role to work as a liaison between the consult team and bedside nurses.
McConnell S; Raffin Bouchal S; Moules N; Rallison L
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="https://doi.org/10.1016/j.jpainsymman.2016.10.075">10.1016/j.jpainsymman.2016.10.075</a>
"the Doctor Is In”: The Role Of Child Psychiatrists In Pediatric Palliative Care (sa502)
Objectives
•
Define a collaborative model between pediatric palliative care teams and child psychiatry.
•
Demonstrate knowledge of psychotropic medication use in children with advanced illness.
•
Recognize when the involvement of child psychiatry is warranted in specific pediatric palliative care cases.
Prioritizing quality of life (QOL) and decreasing suffering in children and adolescents with life-limiting illness are necessary components of pediatric palliative care (PPC). Care teams are increasingly interdisciplinary, yet what is often missing is the presence of a consulting child psychiatrist. Suffering is often viewed in terms of physical symptoms, but the psychological needs of children with advanced illness often require the specific expertise of child/adolescent psychiatrists. Collaborative models are rare; rarer still are PPC teams with dedicated psychiatrists available to guide assessment, diagnosis, and treatment in this unique pediatric population. Few child psychiatrists are specifically trained to manage children with advanced illness or end-of-life symptoms, while many may feel ill-equipped to do so.
Through a combination of didactic presentation, case-based discussion, and interactive audience participation, attendees will achieve a new and deeper understanding of psychiatric issues and management challenges facing PPC patients/families and care teams. The presentation will include an overview of a model of collaboration between child psychiatry and palliative care teams; discuss a range of psychotropic medications used in children/adolescents with advanced illness; and review cases where child psychiatry consultation proved essential to patient management.
Participants will gain familiarity with the vital role of the child psychiatrist in palliative care cases; review psychopharmacologic interventions for symptoms in PPC; and appreciate the range of circumstances faced by PPC teams that may be best managed through consultation with psychiatry.
Vanessa Battista; Jennifer Minarcik Hwang; Pamela Mosher; Anna Muriel
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).
http://dx.doi.org.ezproxy.library.ubc.ca/10.1016/j.jpainsymman.2015.12.263
"We Feel Like We Are in the Dark": A Population Level Qualitative Study of the Training and Support Needs of Hospice Nurses Caring for Children and Families in the Community (RP417)
qualitative study; training; support needs; hospice nurses
Objectives: * Describe the evidence from a growing body of literature demonstrating the dearth of pediatric-focused training and resources for community hospice nurses, as well as the lack of comfort of community hospice nurses with providing pediatric care. * Characterize the pediatric-specific training and support needs of hospice nurses who provide care to children and families in the community. * Describe the innovative ideas proposed by study participants for development of pediatric-specific resources and training opportunities for community hospice nurses. Importance: Approximately 500,000 children suffer from serious illness annually, with 50,000 children dying each year. Many of these children and families are eligible for provision of community-based hospice care, yet few organizations offer formal pediatric services. Recent population level data demonstrate that hospice nurses lack training, experience, and comfort in provision of care to children in the community; however, the specific educational preferences and supportive needs of hospice nurses is not well understood. Objective(s): To investigate and describe the pediatric-specific training and support needs of hospice nurses providing care to children and families in the community. Method(s): From a population-level cohort of 551 hospice nurses who completed a comprehensive quantitative survey, an exploratory cohort of 40 hospice nurses were selected using purposive sampling to stratify participants into sub-cohorts based on prior self-reported levels of comfort with pediatric hospice provision. Semi-structured interviews were conducted, with subsequent inductive codebook development. Constant comparative analysis was performed across transcripts using MAXQDA software. Result(s): The majority of hospice nurses described insufficient training to care for children with serious illness. Nurses imagine an ideal training experience to involve in-person learning with prioritization of specific topics, including symptom management, medications/dosing, pediatric-specific equipment, concurrent care, anticipatory guidance on disease trajectories and end of life, supporting families, and staff resilience. Barriers to realizing training experiences include lack of awareness of available resources, training opportunities, and mentorship/networking across the pediatric palliative care landscape, as well as stigma against pediatric hospice and palliative care. Conclusion(s): Community hospice nurses express an urgent need for improvements in pediatric-specific resources and training opportunities. Importantly, they offer robust visions for improving training paradigms and available resources. Impact: These data offer opportunities for collaborative development and investigation of educational programs and policies to improve the provision of community-based pediatric hospice for children, families, and nurses. Copyright © 2020
Porter A; Kiefer A; Gattas M; Baker J; Kaye E
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.2020.04.085" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.085</a>
“A Child's Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214)
Arkansas; Child; Community Health Services; Death; Hospices; Mississippi; Nurses; Palliative Care; Quality of Life; Self Report; Tennessee
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-methods survey- and interview-based exploration of perspectives and needs of community-based hospice nurses who provide care to children with serious illness and their families at the end of the life 3. Characterize and explain how to implement a spoke-and-hub model for providing hospice nurses with pediatric-specific training, support, and solidarity Approximately 500,000 children in the United States suffer from serious illness, of whom 10% die annually. Optimal provision of hospice services can lessen symptom burden and improve quality of life, reduce parental psychosocial stress, decrease costs, and limit clinician distress. Nonetheless, only 1 in 10 dying children receive hospice care, usually through adult organizations, and few community hospice nurses receive pediatric-specific training, resources, and support. In this concurrent session, interdisciplinary pediatric palliative care physicians and advance practice providers will partner with community-based hospice nurses to propose a resource-efficient, comprehensive intervention to address this challenge. First, they will review existing research findings, including a mixed-methods survey study of >550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi, and an interview-based, qualitative study of 41 of hospice nurses representing various levels of self-reported comfort with caring for children at the end of life (eg, very comfortable, somewhat comfortable, somewhat uncomfortable, very uncomfortable). The survey study found that nearly 90% of nurses had no pediatric palliative care training, 50% had no pediatric hospice experience, those with exposure described limited training (eg, online module, 2-day course), and few had opportunities to build skills. Both the survey and interviews revealed that nurses reported overwhelming discomfort with pediatric-specific care, clearly articulated gaps in training and support, and expressed a strong desire for further pediatric-specific education, resources, and support. Next, presenters will propose a spoke-and-hub model driven by community hospice nurses’ insights and recommendations, in which pediatric academic centers partner with community hospices to bring clinicians together regularly to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time.
Porter A; Aglio T; Williams K; Baker JN; Kaye EC
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.2022.02.249" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.249</a>
“Burst” ketamine for refractory cancer pain: an open-label audit of 39 patients
2001
Jackson K; Ashby M; Martin P; Pisasale M; Brumley D; Hayes Barbara
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
“Burst” Ketamine for Refractory Cancer Pain: An Open-Label Audit of 39 Patients Kate Jackson, MB BS, DTM&H, FRCA, FAChPM, Michael Ashby, MB
The results of a novel approach to the use of ketamine in refractory cancer pain are reported. In this prospective, multicenter, unblinded, open-label audit, 39 patients (with a total of 43 pains) received a short duration (3 to 5 days) ketamine infusion. The initial dose of 100 mg/ 24 hr was escalated if required to 300 mg/24 hr and then to a maximum dose of 500 mg/ 24hr. The overall response rate was 29/43 (67%). Analysis of results according to pain mechanisms showed that 15/17 somatic and 14/23 neuropathic pains responded. In 5 patients who appeared to respond, it is possible that another concurrent intervention may have contributed in whole or part for the pain relief observed. After cessation of ketamine, 24/29 maintained good pain control, with a maximum documented duration of eight weeks. However, 5 of the initial 29 responders experienced a recurrence of pain within 24 hours, and ketamine was recommenced. Of these, 2 underwent another intervention for pain control while 3 continued on ketamine until their deaths between two and four weeks later. Twelve patients reported adverse psychomimetic effects, with the incidence rising with increasing dose. Four of these were non-responders and the ketamine was stopped. Eight were responders, and in 3 the adverse effects were rendered acceptable with dose reduction; the other 5 rejected a dose reduction. The results reported suggest the need for further investigation of the place of ketamine in cancer pain management.
2001-10
Jackson K; Ashby M; Martin P; PallMed Dip; Pisasale M; Brumley D; Hayes B
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)00340-2" target="_blank" rel="noreferrer">10.1016/S0885-3924(01)00340-2</a>
“It's Hard Not to Have Regrets:” Qualitative Analysis of Decisional Regret in Bereaved Parents
Parents; child; Bereavement; pediatric cancer; parent; bereavement; decisional regret
Context Bereaved parents may have heightened risk for decisional regret; however, little is known about regret early in bereavement. Objectives We characterized decisional regrets endorsed by parents of children who died from cancer within the first two years of their bereavement. Methods We analyzed responses from a cross-sectional, dual site study of parents 6 to 24 months from their child's death. Parents indicated whether they had regrets about decisions made at the end of their child's life (yes/no/I don't know) and elaborated with free text. We used content analysis to identify recurrent categories in parents’ responses. Results A total of 125 parents of 88 children completed the survey; 123 responded to the decisional regret item and 84 (63%) elaborated with free text. Forty-seven (38%) parents reported decisional regret(s), 61 (50%) indicated no regret(s), and 15 (12%) were unsure. Parental free-text responses related to 5 categories: treatments, including those pursued and/or not pursued (n=57), decision-making processes (n=35), relationships with their child and care team (n=26), child suffering (n=10), and end-of-life characteristics (n=6). The relative frequency of categories was similar in parents with and without decisional regret, but self-blame was more common in responses from parents with decisional regret. Conclusion Many bereaved parents endorse decisional regret in early bereavement. Treatments and decision-making processes were most cited among parents both with and without regret. Identifying factors associated with heightened parental risk of decisional regret using longitudinal study is an important focus of future research.
Feifer D; Broden E; Baker JN; Wolfe J; Snaman 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.2022.12.144" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.144</a>
“scared Of Palliative”: Perspectives On Palliative Care From Pediatric Nurses Caring For Children With Progressive Life Shortening Illnesses On Acute Care Units
Objectives: Children with Progressive Life Shortening
Illnesses (PLSIs) are children whose lives are shrouded
with uncertainty as they live with conditions for which
cure, and often even effective treatments, is not available.
Nevertheless, the number of children with PLSIs who
require long-term management of their disease condition
in hospital is steadily increasing. Accordingly, pediatric
nurses on general hospital units frequently care
for children with PLSIs and are intensely engaged in controlling
pain and managing complex symptoms such as
respiratory support, feeding issues, and seizure management.
Despite pediatric nurses carrying out the essential
aspects of palliative care, specifically pain and symptom
management, they typically do not identify their practice
as being influenced by the tenets of palliative care and
even described feeling ‘‘scared of palliative.’’
Methods: Qualitative data was collected through individual
interviews with pediatric acute care nurses, the transcripts
of which were analyzed according to the
interpretive methodology of philosophical hermeneutics.
Results: Participants revealed a limited understanding
of the scope and breath of pediatric palliative care.
Participants avoided using the language of palliative
care in their discussion of their work with children
with PLSIs. When they did use the language of palliative
care, it was taken up in the sense of end-of-life
care: ‘‘she was made palliative that day.’’ Furthermore,
participants often deferred to the palliative care consult
team when asked about how they understood
the role of palliative care in their practice.
Conclusions: Nurses working with children with PLSIs
and their families could benefit from support and
empowerment in their work through an integrative
and creative approach with the palliative care consult
team. This would include involvement of acute care
nurses in decision making conversations and the implementation
of an Advanced Practice Nursing role to work
as a liaison between the consult team and bedside nurses
Shelagh McConnell; Shelley Raffin Bouchal; Nancy Moules; Lillian Rallison
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.2016.10.075
“Still Caring for the Family”: Condolence Expression Training for Pediatric Residents
Pediatrics; Communication; Bereavement; Education; Residency
Abstract Context: Insufficient communication from the medical team following a child's death may compound parental grief. Pediatric residents care for children who die, yet the landscape of condolence expression education within residency programs has not been studied. Objectives: The objective of this study was to evaluate pediatric residents' levels of experience and comfort with condolence expression and to assess their needs and desires for training in condolence expression. Methods: A cross-sectional, mixed methods survey was developed by palliative care clinicians in collaboration with bereaved parents. In 2020, following pilot testing, an electronic survey measuring resident experience with, comfort with, and training on condolence expression was distributed to 202 third-year pediatric residents across 17 ACGME-accredited programs representing varying sizes and geographic regions. Results: Ten percent of pediatric residents surveyed reported having training on condolence expression. Almost all residents considered condolence expression to be beneficial for bereaved families and most for clinicians, too, yet most had never formally expressed condolences in their roles as physicians: 83.1% had never written a condolence letter, 85% had never made a condolence phone call, and 90.5% had never attended a memorial event. Commonly reported barriers to condolence expression included lack of experience and training, as well as concern about upsetting families. Conclusions: Pediatric residents lack comfort with and training in condolence expression and desire education to address these gaps. These findings should inform development and investigation of educational resources and training opportunities for residents to learn and practice compassionate provision of condolences to grieving families.
Porter AS; Weaver MS; Snaman JM; Chen L; Zhaohua L; Baker JN; Kaye EC
Journal of Pain and Symptom Management
2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.05.019" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.05.019</a>
A comparison between telephone and bedside consultations given by palliative care consultation teams in the Netherlands: results from a two-year nationwide registration
patient care team; Adolescent Adult Aged Aged; PedPal Lit; methods; 80 and over Child Child; methods Male Middle Aged Netherlands Palliative Care/; Preschool Comparative Study Female Humans Interviews/; Referral and Consultation Registries; Telephone
2005
Schrijnemaekers V; Courtens A; Kuin A; van der Linden B; Vernooij-Dassen M; van Zuylen L; van den Beuken M
Journal Of Pain And Symptom Management
2005
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.2004.09.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.09.002</a>
A Comparison Of Circumstances At The End Of Life In A Hospital Setting For Children With Palliative Care Involvement Versus Those Without
Context: Specialized pediatric palliative care (PPC) services have become more common in urban pediatric hospital settings, although little is known about palliative care specialist involvement.Objectives: The objective of this study was to compare circumstances before death in children who spent their last days of life in an inpatient pediatric hospital setting, with or without PPC provider involvement during their inpatient stay.Methods: Retrospective chart review of medical records of children for the last inpatient stay that resulted in death at a children's hospital setting between January 2012 through June 2013. The setting was a free-standing, 385-bed tertiary care children's hospital.Results: Charts were reviewed for 114 children between 0 and 18 years of age, who were hospitalized for at least 24 hours before their death. Half of the children who died as inpatients were infants (median age five weeks). Children who received an inpatient PPC consult (25% of the sample) experienced 1) a higher rate of pain assessments, 2) better documentation around specific actions to manage pain, 3) greater odds of receiving integrative medicine services, 4) fewer diagnostic/monitoring procedures (e.g., blood gases, blood draws, placements of intravenous lines) in the last 48 hours of life, and 5) nearly eight times greater odds of having a do-not-resuscitate order in place at the time of death.Conclusion: The integration of a PPC team was associated with fewer diagnostic/monitoring procedures and improved pain management documentation in this study of 114 children who died as inpatients.
Osenga K; Postier A; Dreyfus J; Foster L; Teeple W; Friedrichsdorf SJ
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="https://doi.org/10.1016/j.jpainsymman.2016.05.024">10.1016/j.jpainsymman.2016.05.024</a>
A Comparison Of Continuing Bonds Over Time In Bereaved Parents And Siblings After The Death Of A Child
Objectives * Compare purposeful and non-purposeful continuing bonds between one and two years post-death. * Compare comforting and discomforting effects of continuing bonds between one and two years post-death. Original Research Background. Continuing bonds refer to bereaved individuals maintaining connections with the deceased. Continuing bonds have been described as a coping strategy for bereaved individuals, but few studies have compared similarities and differences in how bonds evolve over time. Research Objectives. This study compared reports of continuing bonds from bereaved parents and siblings at one (T1) and two (T2) years after the death of a child to cancer. Methods. Twenty-six families participated in both years of the study. Participants included mothers (n = 21), fathers (n =15), and siblings (n = 25). Semi-structured home interviews using open-ended questions were conducted with parents and siblings separately. Content analysis identified emerging themes and included counts and frequencies of participant responses. McNemar tests examined differences in the frequency of responses between T1 and T2 data. Results. Similar to participants' reports at one year post-death, themes emerging from participants' reports at two years post-death included purposeful (e.g., visual representations of the deceased, visiting the cemetery, communicating to the deceased) and non-purposeful (e.g., dreams about the deceased, visits/signs from the deceased) continuing bonds and comforting and discomforting effects. Frequency reports of each category at T1 and T2 will be presented. Comparisons between T1 and T2 data were not statistically significant. Conclusion. Reports of continuing bonds from bereaved parents and siblings after the death of a child are similar at one and two years post-death. Continuing bonds may be a long-term coping strategy used by bereaved individuals. Implications for Research, Policy or Practice. Providers should be mindful to assess continuing bonds with bereaved families and aware that effects can be both comforting and discomforting. More research is needed to determine how to facilitate positive effects from continuing bonds and whether interventions to promote bonds could be helpful.
Akard T F; Dietrich M; Baudino M; Stone A
Journal Of Pain And Symptom Management
2016
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A double-blind, crossover trial of intravenous clodronate in metastatic bone pain
Female; Humans; Male; Pain Measurement; Adult; Aged; Middle Aged; Double-Blind Method; 80 and over; Infusions; Intravenous; Clodronate; Clodronic Acid/administration & dosage/therapeutic use; Bone Neoplasms/physiopathology/secondary; Pain/diagnosis/drug therapy/etiology
After a baseline symptom and laboratory assessment, 24 patients with metastatic bone disease and pain were randomized to receive either a 4-hr intravenous infusion of 2-dichloromethylene bisphosphonate (Cl2MDP), 600 mg in 500 mL of normal saline, or a 4-hr placebo infusion, 500 mL of normal saline. The administration was double blind. After 1 wk, the assessment was repeated and the patients were crossed over to the alternate treatment. After 1 more wk, a final assessment and blinded choice by the patient and investigator took place. Of the 21 evaluable patients, 12 (57%) chose the Cl2MDP and 4 (19%) chose the placebo; 5 (24%) patients did not have a specific preference (p = NS). The investigator chose the Cl2MDP in 14 (67%) cases, placebo in 6 (29%) cases and was unable to discern a difference in 1 (5%) case (p less than 0.05). The patients and investigator made similar selections in 16 (76%) instances. On the visual analogue scale assessments, a significant decrease in pain scores was observed following the Cl2MDP infusion (p less than 0.01) and an increase in activity scores was also demonstrated (p less than 0.01). No significant difference in the daily oral morphine equivalent analgesic requirement was demonstrated for either arm. No difference in clinical and laboratory parameters of toxicity was evident between the placebo and Cl2MDP arms of the trial. Our preliminary findings suggest that Cl2MDP is safe, and has analgesic properties that may prove to be useful in the management of metastatic bone pain.
1992
Ernst DS; MacDonald RN; Paterson AH; Jensen J; Brasher P; Bruera E
Journal Of Pain And Symptom Management
1992
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/10.1016/0885-3924(92)90101-m" target="_blank" rel="noreferrer">10.1016/0885-3924(92)90101-m</a>
A measure of the quality of dying and death. Initial validation using after-death interviews with family members
Female; Male; Terminal Care; Cohort Studies; Aged; Personal Satisfaction; quality of life; Non-U.S. Gov't; retrospective studies; Human; Attitude to Death; Death; Support; Middle Age; Family; Interviews; Questionnaires/standards
A reliable and valid measure of the quality of the dying experience would help clinicians and researchers improve care for dying patients. To describe the validity of an instrument assessing the quality of dying and death using the perspective of family members after death and to identify clinical correlates of a high quality death, a retrospective cohort study evaluated the 31-item Quality of Dying and Death (QODD) questionnaire. The questionnaire was administered to family members of patients who died in Missoula county Montana in 1996 and 1997. The interview included questions assessing symptoms, patient preferences, and satisfaction with care. Measurement validity was examined for item and total scores and reliability analyses for the QODD total score were assessed. Construct validity was assessed using measures of concepts hypothesized to be associated with the quality of dying and death. There were 935 deaths, of which 252 (27.0%) family interviews were represented. Non-enrolled decedents were not significantly different from enrolled decedents on age, sex, cause of death, or location of death. We excluded sudden deaths (n = 45) and decedents under age 18 (n = 2), leaving 205 after-death interviews. A total QODD score, on a scale from 0 to 100 with higher scores indicating better quality, ranged from 26.0 to 99.6, with a mean of 67.4 and Cronbach's alpha of 0.89. The total QODD score was not associated with patient age, sex, education, marital status, or income. As hypothesized, higher QODD scores were significantly associated with death at home (P < 0.01), death in the location the patient desired (P < 0.01), lower symptom burden (P < 0.001), and better ratings of symptom treatment (P< 0.01). Although the total score was not associated with the presence of an advance directive, higher scores were associated with communication about treatment preferences (P < 0.01), compliance with treatment preferences (P < 0.001), and family satisfaction regarding communication with the health care team (P < 0.01). Availability of a health care team member at night or on weekends was also associated with a higher QODD score (P < 0.001). The QODD total score demonstrated good cross-sectional validity. Clinicians caring for dying patients should focus on improving communication with the patient and family and improving symptom assessment and treatment. Health care teams should focus on continuity of care, including having a team member familiar with the patient available for calls at nights and on weekends. Future work will assess the potential role of the QODD in improving the quality of the dying experience.
2002
Curtis JR; Patrick DL; Engelberg RA; Norris K; Asp C; Byock I
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 Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
community needs assessment (CNA); pediatric hospice; pediatric palliative care
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist in order to improve and increase access to PPC for children in need. OBJECTIVE(S): Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC community needs assessment are described. METHOD(S): A mixed-method descriptive design with multiple stages incorporating different methodological approaches was utilized. These included: (1) literature review, (2) community profile, (3) survey and interview questionnaire development, (4) windshield survey, (5) identifying and interviewing key informants, and (6) quantitative survey of the state's hospice organizations. Key themes (Providing PPC, PPC Environment, Collaboration and Future of PPC) and subthemes emerged which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULT(S): Are described in a subsequent manuscript. CONCLUSION(S): This approach can be utilized by other state organizations, coalitions, governments or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care. Copyright © 2020. Published by Elsevier Inc.
Brock K E; Allen K E; Barton C; Shapiro R; Weintraub B; Wasilewski-Masker K; Escoffery C; Johnson K
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.2020.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.004</a>
A Pilot Study of the Effects of COMPLETE: A Communication Plan Early Through End of Life, on End-of-Life Outcomes in Children With Cancer
child; hospice; Child; Humans; cancer; communication; palliative care; Communication; Terminal Care; Prospective Studies; hospice; Death; Pilot Projects; Hospice Care; goals-of-care; Neoplasms/therapy; cancer; palliative care; communication; Child; goals-of-care
Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL). Objective(s): To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL. Method(s): This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope. Result(s): Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001). Conclusion(s): COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Moody KM; Hendricks-Ferguson VL; Baker R; Perkins S; Haase JE
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.2020.03.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.033</a>
A Plateau in Pediatric Palliative Program Prevalence
child; human; letter; palliative therapy; prevalence; quality of life
The prevalence of Pediatric Palliative Care (PPC) programs for children significantly increased over the past two decades. In more recent years, however, evidence suggests a plateau in program expansion and service reach, despite the current reality that only 80% of children’s hospitals offer PPC programs and only half have access to hospice care for children. In reconciling historic trends in PPC program growth with current limitations in access and scope, events and lessons from the past 6 years’ plateau should inform future programmatic development. The purpose of this report is to describe and comment on trends in inpatient PPC program growth from 2015 to 2020. Recommendations for national expansion of PPC programs are included.
Weaver MS; Shostrom VK; Kaye EC; Keegan A; 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.2022.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.07.008</a>
A randomized, controlled trial of intravenous clodronate in patients with metastatic bone disease and pain
Female; Humans; Male; Pain; Adult; Analgesics; Aged; Middle Aged; Treatment Outcome; Analysis of Variance; Chi-Square Distribution; Cross-Over Studies; 80 and over; Comparative Study; Injections; Intravenous; Dose-Response Relationship; Drug; Clodronate; Pain Measurement/drug effects; Clodronic Acid/administration & dosage; Non-Narcotic/administration & dosage; Intractable/drug therapy/etiology; Bone Neoplasms/complications/secondary
To evaluate the effectiveness of intravenous clodronate in ameliorating refractory bone pain in patients with metastatic bone disease, 60 patients with established osseous metastases and persistent bone pain were randomized to receive either clodronate (600 mg or 1500 mg in 500 mL of normal saline) or 500 mL of saline as placebo. After 2 weeks, the patients were crossed over to receive the alternate treatment. After another 2 weeks, each patient and investigator made a blinded choice. Daily visual analogue scales (VAS) and analgesic diaries were recorded throughout the study period. Forty-six patients were evaluable (77%). A treatment x period interaction was identified in the VAS and daily morphine equivalent dose (DMED) scores. First period analysis of the VAS scores for general pain, pain at rest, and pain upon movement demonstrated an average reduction of 13, 14, and 24 mm, respectively, from baseline, but were not significantly different from changes following placebo. The average change in DMED was -6.4 (SE = 2.9) following clodronate and was +24.6 (SE = 14.9) following placebo (p = 0.03). In the blinded choice of which agent resulted in improvement in pain, 26 (57%) patients chose clodronate, 12 (26%) chose placebo, and eight (17%) had no preference (p = 0.0021). For the investigators who also made a blinded selection, clodronate was chosen in 30 (65%) patients, placebo in ten (22%) patients, and no difference was apparent in six (13%) (p < 0.0001). Intravenous clodronate appeared to have analgesic effect in patients with refractory bone pain due to metastatic bone disease. The optimal dose and duration of effect require further evaluation, particularly in patients with stable disease and persistent bone pain.
1997
Ernst DS; Brasher P; Hagen N; Paterson AH; MacDonald RN; Bruera E
Journal Of Pain And Symptom Management
1997
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(97)00075-4" target="_blank" rel="noreferrer">10.1016/s0885-3924(97)00075-4</a>
A Seat at the Table: Professional Competencies Define Roles and Value of Psychologists in Pediatric Palliative Care (TH110B)
Palliative Care
Outcomes: 1. Describe the development of essential competencies for psychologists in pediatric palliative care (PPC) 2. Discuss psychologists' roles in PPC, research, and education and the value of inclusion as members of the multidisciplinary PPC team Psychologists are not yet routinely embedded into pediatric palliative care (PPC) teams, though have been increasingly recognized as contributing unique expertise to the field (eg, evidence-based assessment and treatment of psychological symptoms; research methods, design, and implementation; team- and systems-related skills). Accordingly, national and international organizations have called for inclusion of psychologists and behavioral health specialists within PPC (eg, World Health Organization, 2018; American Psychological Association, 2017; Psycho-Oncology Cooperative Research Group, 2021). Responding to these calls, a workgroup of nine pediatric psychologists (ie, clinicians, researchers, and educators with 4–16 years of experience in PPC) set out to develop competencies for PPC psychologists. Goals were to (1) define the role of psychology in PPC and increase interdisciplinary colleagues’ understanding of our expertise, (2) advocate for inclusion of psychologists in PPC teams, and (3) standardize graduate and post-graduate training to ensure a competent workforce. The proposed Podium Presentation will describe the process of developing these competencies, including review of existing competencies in related mental health disciplines and other psychology subspecialties, selection of a competency model, competency draft development, and review by a multidisciplinary and diverse group of stakeholders, all with careful attention to diversity, equity, and inclusion in clinical care, research, education, and training. We will introduce the essential competencies in six functional and foundational domains (ie, application, education, systems, science, interpersonal, and professionalism) along with corresponding behavioral anchors, thereby orienting the multidisciplinary audience to the unique contributions of psychologists in PPC. Finally, we will highlight how these competencies can help PPC leaders advocate for inclusion of psychology on PPC teams, recruit qualified psychologists into new roles on those teams, and best utilize the expertise of their psychology team members to promote comprehensive biopsychosocial care of patients and families.
Thompson AL; McCarthy SR; Kentor RA
Journal of Pain and Symptom Management
2023
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<a href="http://doi.org/10.1016/j.jpainsymman.2022.12.033" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.12.033</a>
A Stakeholder-Driven Qualitative Study to Define High Quality End-of-Life Care for Children With Cancer
Oncology
Context Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply. Objective We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer. Methods In a multicenter qualitative study, we conducted interviews and focus groups with: adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings. Results We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom management, and honoring family preference for location of death. Many participants valued access to the emergency department or hospital for symptom management or supportive care, which diverges from measures for high quality EOLC in adults. Most wished to avoid mechanical ventilation and cardiopulmonary resuscitation. Notably, participants generally valued hospice; however, few understood hospice care or had utilized its services. Conclusion Childhood cancer stakeholders define high quality EOLC primarily through person-centered measures, characterizing half of existing adult-focused measures as limited in relevance to children. Future research should focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
Ananth P; Mun S; Reffat N; Li R; Sedghi T; Avery M; Snaman J; Gross CP; Ma X; Wolfe J
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.2021.01.134" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.01.134</a>
A Strategy for Conversion From Subcutaneous to Oral Ketamine in Cancer Pain Patients: Effect of a 1:1 Ratio
cancer pain; dose ratio; oral ketamine; Subcutaneous ketamine
Context No consensus exists about the most appropriate dose ratio for conversion from parenteral to oral ketamine. Objectives To confirm that a 1:1 dose ratio is suitable for converting subcutaneous (s.c.) to oral ketamine in cancer patients. Methods Patients with opioid poorly responsive cancer pain, who responded to 0.4, 0.6, or 0.8 mg s.c. ketamine bolus, were treated with 0.1, 0.15, or 0.2 mg/kg/h ketamine infusion, respectively. Switching to the oral route, by applying a 1:1 dose ratio, was carried out in patients who experienced adequate pain relief and continued to need ketamine as a coanalgesic. Pain, somnolence, feelings of insobriety, confusion, and cardiovascular parameters were assessed throughout the process. Results Twenty-nine patients were enrolled in the study. Ketamine infusion decreased pain intensity from severe to no pain or slight pain in 23 of 29 and six of 29 patients, respectively. The median of s.c. ketamine doses was 0.2 mg/kg/h (range 0.1–0.5). After oral switching, 27 of 29 patients remained as successfully controlled as when receiving s.c. ketamine. The other two patients needed a slight dose ratio readjustment, to 1:1.3 and 1:1.5, to maintain pain control. The median of oral ketamine doses was 300 mg/day (interquartile range 240–382.5). Seven of 29 patients receiving s.c. ketamine developed moderate and transitory side effects, such as feelings of insobriety and somnolence. No side effects were present while receiving oral ketamine. No significant changes were observed in cardiovascular parameters. Conclusion A 1:1 dose ratio for conversion from s.c. to oral ketamine is safe and effective in cancer pain patients.
Benítez-Rosario MA; Salinas-Martín A; González-Guillermo Toribio; Feria M
Journal Of Pain And Symptom Management
2011
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Journal Article
<a href="http://doi.org/10.1016/j.jpainsymman.2010.08.017" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2010.08.017</a>
Access to Pediatric Palliative Care in the Neonatal Intensive Care Unit by Minorities and Rural-Dwellers in the Deep South: Patterns of Care from 2009-2017 (S816)
infant; hospice; mortality; Mississippi; Alabama; palliative therapy; major clinical study; retrospective study; Caucasian; neonatal intensive care unit; prematurity; time of death; conference abstract; medical record review; human; child; female; male; controlled study; hospitalization; resuscitation; statistics; medicaid; data analysis software; Louisiana; African American; hospitalized infant; travel
Objectives: 1. Describe patterns of pediatric palliative care and care disparities in neonatal intensive care unit (NICU) patients and families hospitalized in the Deep South (Alabama, Louisiana, and Mississippi). 2. Describe implications for practice related to current trends of pediatric palliative care use in the NICU and implications for future research. Original Research Background: Pediatric mortality is the highest in the first year of life. In 2013, 23,446 infants died in the U.S. Access to timely pediatric palliative care (PPC) services are limited for seriously ill infants and their families in the U. S. Deep South. Patterns of PPC in the neonatal intensive care unit (NICU) and the extent of PPC disparities in the Deep South are unknown. Research Objectives: Examine racial and geographical differences in pediatric palliative care (PPC) consultation for seriously ill infants in the neonatal intensive care unit.
Currie E; Wolfe J; Boss R; Ejem D; Perna S; Dionne-Odom J; Buckingham S; McKillip K; Bakitas M
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.2018.12.269" target="_blank" rel="noreferrer noopener"> 10.1016/j.jpainsymman.2018.12.269</a>
An advance directive in two questions.
Female; Humans; Palliative Care; Aged; Resuscitation Orders; Fatal Outcome; DNAR; Pain/et [Etiology]; Advance Directives; Health care reform; Living Wills; Meningitis/et [Etiology]; Pain Management; Pancreatic Neoplasms/co [Complications]; Pancreatic Neoplasms/pa [Pathology]; Pancreatic Neoplasms/th [Therapy]
It has been two decades since advance directives have become an integral part of health care. Impediments to their optimal usage are common and multifactorial. Decisions commonly have to be made when patients are unable to do so or choose not to participate in decision making, often at the end of life. The use of two questions, 1) "If you cannot, or choose not to participate in health care decisions, with whom should we speak?" and 2) "If you cannot, or choose not to participate in decision making, what should we consider when making decisions about your care?," may accomplish the major goals of an advance directive.Copyright © 2011 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.
Mahon MM
Journal Of Pain And Symptom Management
2011
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.2011.01.002" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2011.01.002</a>
An evaluation of By My Side: Peer support in written form is acceptable and useful for parents bereaved by childhood cancer
child mortality; parents; bereavement; psychosocial support systems; peer group; neoplasm/mortality*
CONTEXT: Cancer is the leading cause of non-accidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalise grief experiences and reduce parents' isolation. It is available free of charge. AIM: This project evaluated the acceptability, relevance, emotional impact and usefulness of By My Side. DESIGN: Bereaved parents and healthcare professionals provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyse the data. SETTING: /participants: We mailed a study invitation and evaluation questionnaire to parents and healthcare professionals who ordered a copy of By My Side. RESULTS: Twenty-four bereaved parents and seven healthcare professionals provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was 'just right'. 75% of parents reported that the book made them feel that their reactions to their child's death were normal/appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and healthcare professionals reported that the book provided useful information about grief. 83.4% of parents and 85.7% of healthcare professionals would recommend it to others. CONCLUSION: By My Side was acceptable and useful to bereaved parents and healthcare professionals. Results suggest that peer support in written form may help normalise aspects of grief and comfort parents bereaved by childhood cancer.
Raharjo C; Hetherington K; Donovan L; Fardell J E; Russell V; Cohn R J; Morgan N; Siddiqui J; Wakefield C E
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.2020.01.013" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.01.013</a>
An evaluation of the Faces Pain Scale with young children
Child; Female; Humans; Male; Reproducibility of Results; Facial Expression; Preschool; Non-U.S. Gov't; Research Support; Pain Measurement/methods/psychology
The psychometric characteristics of the Faces Pain Scale (FPS) were evaluated in three groups of preschool and school-aged children (3. 5-4.5; 4.5-5.5 and 5.5-6.5 years, respectively). The FPS was adequately comprehended by even young children. It was easily administered and was valid and discriminating. It did not, however, possess the linear scalability claimed by its authors.
2000
Hunter M; McDowell L; Hennessy R; Cassey J
Journal Of Pain And Symptom Management
2000
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Journal Article
<a href="http://doi.org/10.1016/s0885-3924(00)00171-8" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00171-8</a>
An Interprofessional Team-Based Intervention to Address Barriers to Initiating Palliative Care in Pediatric Oncology: A Multiple-Method Evaluation of Feasibility, Acceptability, and Impact
oncology; Pediatric palliative care; feasibility; codesign; team cohesion; team collaboration
CONTEXT: Many children with advanced cancer are not referred to palliative care despite both professional recommendations to do so and bereaved parental preference for earlier support from sub-specialty palliative care. OBJECTIVES: To assess the feasibility, acceptability, and impact of an adaptive intervention to address individual and team-level barriers to specialty palliative care referrals. METHODS: A multiple-method approach assessed feasibility and acceptability among clinicians from pediatric oncology teams at a single institution. Quantitative measures of comfort with palliative care consultations, team cohesion, and team collaboration were conducted before and after the intervention. Number of palliative care consults were examined before, during, and after sessions. Intervention satisfaction surveys and qualitative interviews were conducted after the intervention. RESULTS: Twenty-six team members (90% of consented) attended at least one intervention session with 20 (69%) participants completing 75% or more sessions. The intervention was modified in response to participant feedback. After the intervention, participants reported greater team cohesion, comfort discussing palliative care consultation, team collaboration, process satisfaction, and decision satisfaction. Participants agreed that the training was useful, effective, helpful, and worthwhile, that they would use the skills, and that they would recommend the training to other providers. The numbers of palliative care consults increased before intervention sessions were conducted, but did not significantly change during or after the sessions. In the interviews, participants reported overall favorably regarding the intervention with some participants reporting changes in practice. CONCLUSION: An adaptive intervention to reduce barriers to initiating palliative care for pediatric oncology teams is feasible and acceptable.
Walter JK; Hill DL; Schall TE; Szymczak JE; Parikh S; DiDomenico C; Carroll KW; Nye RT; Feudtner C
Journal of Pain and Symptom Management
2021
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<a href="http://doi.org/10.1016/j.jpainsymman.2021.06.008" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.008</a>
Anticipating death in children and adults with childhood onset severe central nervous system impairment: A case series review
adult
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet goals. * Utilize language strategies that prepare families when prognosis is not possible. Little is written about trajectories and features that precede death in those with childhood onset severe central nervous system (CNS) impairment. This session will cover this topic through a review of deaths at a long-term care facility for children and young adults with severe neurological impairment and associated complex medical care needs. Of the more than 30 deaths, the majority (70%) were anticipated and guided by goals of care. Circumstances that prompted discussions included: problems that can be attributed to the CNS and remained intractable to various interventions, including seizures, recurrent intestinal pseudo-obstruction (hypothalamus and medulla), pain (thalamus), agitation (loss of CNS inhibition), and edema (medulla); increasing symptom burden; and gradual changes in alertness and ability to participate in activities. Details that preceded unexpected deaths will also be reviewed, including several with acute ileus who died following transfer to a hospital. Details will include: the length of time from the redirection of care plans until death, symptom management at the end-of-life, results of tests, prolonged survival following discontinuation of mechanical ventilation, changes in medical nutrition and hydration, and differences in planned vs unexpected deaths. Outcomes in those who survived using the same noninvasive management strategies will be included given the lack of prognostic ability, a time when parents were prepared for their child's potential death, and how parents responded before and after this experience. This is an important session given the lack of prognostic information, placing such individuals at significant risk for invasive testing and interventions, including surgery, at the end of life. Consideration of testable and "fixable" problems versus problems that can be due to the CNS without confirmatory tests will be discussed. This information will be used to outline "tipping points" that can prompt anticipatory discussions with parents and guardians, with suggested language offered.
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).
Hauer J; Clark C; Jarek H
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.151" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.151</a>
Application of Critical Race Theory in Palliative Care Research: A Scoping Review
adolescent; child; hospice; human; female; male; adult; communication; physician; religion; review; ethnicity; race; Caucasian; American; planning; symptom; aged; Hispanic; medical; research; Asian; therapy; safety; preference; literature; factor; assessment; patient; equity; palliative; care; controlled; systematic; (topic); health; structural; advance; Black; conceptual; cultural; difference; framework; Indian; interpersonal; Islander; Pacific; person; racism; randomized; trial
Context: Structural racism negatively impacts individuals and populations. In the medical literature, including that of palliative care, structural racism's influence on interracial differences in outcomes remains poorly examined. Examining the contribution of structural racism to outcomes is paramount to promoting equity.
Marcewicz L; Kunihiro SK; Curseen KA; Johnson K; Kavalieratos D
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.2022.02.018" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.018</a>
Applying Palliative Care Principles to Communicate With Children About COVID-19
children; communication; coronavirus; COVID-19; pediatric; pediatric palliative
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Weaver M S; Wiener L
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.2020.03.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.020</a>
Are special ethical guidelines needed for palliative care research?
Humans; Guidelines as Topic; Research; Ethics; Medical; Death and Euthanasia; Palliative Care/standards; Biomedical and Behavioral Research; Multi-site Ethics
Recent studies have made it clear that there are substantial opportunities to improve end-of-life care. Doing so will require solid evidence on which to base clinical and policy decisions and this, in turn, will require a focused research effort. However, research that involves patients near the end of life creates numerous ethical challenges. Moreover, the inclusion of dying patients in research may make many providers uncomfortable. In short, there seems to be something ethically unique, and uniquely challenging, about palliative care research. This paper considers 4 arguments for this unique status: 1) dying patients are especially vulnerable; 2) adequate informed consent may be difficult to obtain; 3) balancing research and clinical roles is particularly difficult; and 4) the risks and benefits of palliative research are difficult to assess. We conclude that the first three of these arguments are weak, and that special guidelines are not needed. We suggest, however, that the fourth argument may have some merit, and should be the focus of discussion among investigators, providers, and patients.
2000
Casarett DJ; Karlawish J
Journal Of Pain And Symptom Management
2000
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(00)00164-0" target="_blank" rel="noreferrer">10.1016/s0885-3924(00)00164-0</a>
Are we on the same page? Exploring pediatric patients' involvement with advance care planning
cystic fibrosis; child; adult; female; human; male; caregiver; palliative therapy; neurology; outcome assessment; young adult; review; Medline; advance care planning; systematic review; emotion; randomized controlled trial (topic); acquired immune deficiency syndrome; adolescent; Advance Care Planning; patient participation; pediatric patient
Aasen ERHV; oSovik ML; Stordal K; Lee A
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="https://www.sciencedirect.com/science/article/pii/S0885392423004475?via%3Dihub">10.1016/j.jpainsymman.2023.04.003</a>
Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children with Advanced Cancer
Pediatrics; Pain Management; Methadone; Pediatric Palliative Care; Pediatric Oncology
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. METHODS: A survey was sent to The American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV(R). Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. RESULTS: One-hundred and five respondents (91%) provide palliative care to children >/= 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board-certified in Hospice and Palliative Medicine and most (39, 63%) certified via the direct pathway ("grandfathering"). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended towards decreasing methadone dose more (40% +/- 19%) than non-board-certified physicians (28%, +/-20%) when changing from the oral to intravenous route (p = 0.07). Respondents defined a QTc interval as "prolonged" (mean +/- SD) at 444 milliseconds (+/-68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (+/-33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). CONCLUSIONS: There are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regards to methadone. More education is needed on the accurate value of a prolonged QTc interval.
Madden K; Liu D; Bruera E
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.11.009</a>
Barriers to and facilitators of end-of-life decision-making by neonatologists and neonatal nurses in neonates: a qualitative study
advance care planning; article; child; consultation; content analysis; conversation; decision making; Flanders; human; interview; law; neonatal intensive care unit; neonatal nurse; neonatologist; newborn; perinatal death; privacy; qualitative research; uncertainty
Context Making end-of-life decisions in neonates involves ethically difficult and distressing dilemmas for healthcare providers. Insight into which factors complicate or facilitate this decision-making process could be a necessary first step in formulating recommendations to aid future practice. Objectives This study aimed to identify barriers to and facilitators of the end-of-life decision-making process as perceived by neonatologists and nurses. Methods We conducted semi-structured face-to-face interviews with 15 neonatologists and 15 neonatal nurses, recruited through four neonatal intensive care units in Flanders, Belgium. They were asked what factors had facilitated and complicated previous end-of-life decision-making processes. Two researchers independently analysed the data, using thematic content analysis to extract and summarize barriers and facilitators. Results Barriers and facilitators were found at three distinct levels: the case-specific context (e.g. uncertainty of the diagnosis and specific characteristics of the child, the parents and the healthcare providers which make decision-making more difficult), the decision-making process (e.g. multidisciplinary consultations and advance care planning (ACP) which make decision-making easier), and the overarching structure (e.g. lack of privacy and complex legislation making decision-making more challenging). Conclusions Barriers and facilitators found in this study can lead to recommendations, some simpler to implement than others, to aid the complex end-of-life decision making process. Recommendations include establishing regular multidisciplinary meetings to include all healthcare providers and reduce unnecessary uncertainty, routinely implementing ACP in severely ill neonates to make important decisions beforehand, creating privacy for bad-news conversations with parents and reviewing the complex legal framework of perinatal end-of-life decision-making.
Dombrecht L; Piette V; Deliens L; Cools F; Chambaere K; Goossens L; Naulaers G; Cornette L; Beernaert K; Cohen 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.2019.10.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.10.007</a>
Bereaved Parent Perspectives and Recommendations on Best Practices for Legacy Interventions
bereavement; child life; grief; Legacy; music therapy
Context Many pediatric hospitals offer legacy interventions for families to promote coping and support grief prior to and following the death of a child. Despite this practice, parent perceptions of the value of legacy activities are not well described, and best practices for offering and creating legacy interventions remain poorly understood. Objectives To characterize bereaved parents’ perspectives on the value of legacy activities; to describe parent recommendations for optimizing provision of legacy activities by child life specialists and music therapists. Methods In this qualitative study, a purposive sample of 19 bereaved parents of children who died from cancer participated in semi-structured interviews. Interviews were audio-recorded, transcribed, and analyzed inductively using content analysis to identify key concepts and emerging themes. Results Analysis of transcripts revealed bereaved parent insights and recommendations across three core themes: 1) the value of legacy items and interventions; 2) the practical roles, uses, and functions of legacy items, and 3) best practices for offering legacy interventions. Bereaved parents sought meaning and purpose in abstract and concrete manifestations of legacy. Parents often used legacy items in specific ways to promote emotional expression and process their grief. Communication, timing, and creativity significantly influenced parent perceptions of legacy-building. Parents recommended individualized assessments to optimize provision of legacy interventions. Conclusion Bereaved parents emphasized the meaningfulness of legacy-building activities and the need for an individualized approach when offering these interventions. Future research should explore the perspectives and recommendations of patients and siblings on legacy activities.
Love A; Greer K; Woods C; Clark L; Baker JN; Kaye EC
Journal of Pain and Symptom Management
2022
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.003" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.003</a>
Bereaved Parents Experience Of A Hospital Memorial Service
Objectives
Understand reasons a bereaved parent chooses to
return to the hospital for a memorial service.
Identify elements of a hospital memorial service
that parents identify as most beneficial.
Original Research Background. 77% of children’s
hospitals participating in a palliative care survey reported
offering a hospital-based memorial service
(Feudtner, 2013), yet little is known about bereaved
parents’ experiences of attending such a service.
Research Objectives. This paper reports preliminary
findings from an exploratory, qualitative study
to understand: why bereaved parents choose to attend
a memorial service, what service elements parents
consider most/least beneficial, and how a hospital memorial
service can best meet bereaved parents’ needs.
Methods. Parents experiencing a perinatal, neonatal,
or pediatric death, and attending one of three yearly
hospital-based memorial services, were invited to
participate (Current n¼15). In-person, semi-structured
interviews were conducted within one month
of memorial service attendance by a chaplain
researcher trained in supporting bereaved families; interviews
were recorded and transcribed verbatim.
Each interview was coded by two members of the interdisciplinary
research team using Atlas.ti7 for data
management. Thematic analysis was applied to each
final coded transcript, followed by analysis matrices
development to look at major themes across parent
interviews.
Results. This study is in the last phase of data collection,
with final analysis projected by December, 2015.
Emerging themes from 15 completed interviews
include: a sense of community with fellow bereaved
parents and the importance of others joining the parents
in remembering their child through ritual.
Conclusion. Bereaved parents who return to the hospital
for a memorial service value the opportunity to
honor their child in a supportive setting. Parents
report finding comfort in connecting to their child
through memorial service ritual.
Implications for Research, Policy or
Practice. Future research is needed to understand
the ongoing impact of memorial service attendance
on bereaved parents, including rituals they may
choose to adopt or continue after returning home.
Children’s hospitals are encouraged to establish or
further refine memorial services in support of grieving
parents.
Feudtner, et al. (2013). Pediatric palliative care
programs in children’s hospitals. Pediatrics, 132(6),
1063-1070.
Kobler K; Barnes M
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.2015.12.029
Bereaved Parents' Perceptions of Infant Suffering in the NICU
Neonatal Intensive Care Units; Newborn Infant; Infant; intensive care; Mothers; Neonatal; NICU; Parents; Perception; suffering
CONTEXT: It is challenging to provide supportive intensive care to infants in the neonatal intensive care unit (NICU), giving them every chance for survival, while also trying to minimize suffering for both the infant and parents. Parents who believe their infant is suffering may alter treatment goals based on their perceptions; however, it is unknown how parents come to believe that their infant may be suffering. OBJECTIVES: To examine bereaved parents' perceptions of infant suffering in the NICU. METHODS: Parents completed a qualitative interview exploring their perceptions of the level of suffering that their infant experienced at the end of life. Parents whose infant died in a large Midwestern Level IV regional referral NICU from July 2009 to July 2014 were invited to participate. Thirty mothers and 16 fathers from 31 families (31 of 249) participated in telephone interviews between three months and five years after their infant's death. RESULTS: Four themes emerged from the qualitative analysis: 1) the presence/absence of suffering, 2) indicators of suffering, 3) temporal components of suffering (trajectory), and 4) influence of perceived suffering on parents, infants, and clinical decision making. CONCLUSION: Parents used signs exhibited by infants, as well as information they received from the health care team to form their perceptions of suffering. Perceived suffering followed different trajectories and influenced the decisions that parents made for their infant. Soliciting parent perspectives may lead to improvements in the understanding of infant well-being, particularly suffering, as well as how parents rely on these perceptions to make treatment decisions for their infant.
Fortney CA; Baughcum AE; Moscato EL; Winning AM; Keim MC; Gerhardt CA
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.2019.12.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.007</a>
Buprenorphine for chronic pain in a pediatric patient with sickle-cell disease
pediatric; palliative care; pain; buprenorphine; sickle-cell disease
Sickle-cell disease (SCD) is an inherited hematologic disorder characterized by the presence of sickle-shaped red blood cells (RBC). 1 Misshapen RBCs are rigid, which leads to occlusion of blood vessels resulting in tissue ischemia and pain. Pain can manifest as acute, intermittent episodes (vaso-occlusive crises [VOC]), chronic pain, or acute-on-chronic pain. 1 Buprenorphine is a semisynthetic opioid that has historically been used for opioid use disorder. Due to a unique receptor binding profile and favorable safety profile, including lower risk of tolerance and hyperalgesia, buprenorphine is increasingly recognized for its utility in chronic pain management, especially in complex cases. 2 ,3 Two small studies reported decreased healthcare utilization and daily opioid requirements in adults with chronic SCD pain transitioned from full opioid agonists to buprenorphine. 4 ,5 Another case series of two adolescents with chronic SCD pain described rotation to buprenorphine with improved functionality and decreased opioid requirements. 6 Literature on buprenorphine for pain in pediatric patients is sparse in general and practically nonexistent for pediatric chronic SCD pain. 7 Here, we report buprenorphine induction for chronic pain in a pediatric patient with SCD.
Irwin M; Gunther W; Keefer P; Saul D; Singh S; Wright J; Smith M
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.2021.04.007" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.04.007</a>