Who is responsible for delivering palliative care to children with cancer?

Rosenberg, Abby R.; Weaver, Meaghann S.; Wiener, Lori

doi:10.1002/pbc.26889

Cited by 10 publications

(12 citation statements)

References 12 publications

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“…In resource‐limited clinical settings, many palliative opportunities can be managed with excellent primary PC provided by the oncology and psychosocial teams. However, to ensure the provision of quality PC, ongoing integration of PC teaching in hematology/oncology training will be necessary to prevent missed palliative opportunities 37 …”

Section: Discussionmentioning

confidence: 99%

“…While several studies have shown the positive impact of early referral, these data could support subspecialty PC referral several months into a disease course rather than at diagnosis for patients not incurring multiple upfront opportunities, particularly in care settings where subspecialty PC resources are limited. In resource-limited clinical settings, many palliative opportunities can be managed with excellent primary PC provided by the oncology and psychosocial teams.However, to ensure the provision of quality PC, ongoing integration of PC teaching in hematology/oncology training will be necessary to prevent missed palliative opportunities 37. There were several limitations to this single-institution retrospective study.…”

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confidence: 98%

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Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Ebelhar

Allen

DeGroote

et al. 2020

Pediatric Blood & Cancer

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Background Pediatric patients with sarcomas experience significant morbidity and compromised quality of life throughout their course. These times could be viewed as opportunities for increased subspecialty palliative care (PC). Systematically defining opportunities for additional PC support has not occurred in pediatric oncology. The frequency, timing, and associated factors for palliative opportunities in pediatric patients with sarcomas are unknown. Methods A priori, nine palliative opportunities were defined (disease progression or relapse, admission for symptoms, social concerns or end‐of‐life, intensive care or bone marrow transplant admission, phase 1 trial or hospice enrollment, do‐not‐resuscitate status). A single‐center retrospective review was conducted on patients aged 0‐18 years with bone/soft tissue sarcomas who died from January 1, 2012 to November 30, 2017. Demographic, disease, and treatment data were collected. Descriptive statistics were performed. Opportunities were evaluated over quartiles from diagnosis to death. Results Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities with the majority occurring in the last quartile of the disease course. Number and type of opportunities did not differ by demographics or diagnosis. Eighteen patients (30%) received PC consultation a median of 2.2 months (interquartile range [IQR] 11.5) prior to death. Consultation was unrelated to diagnosis or total opportunities. Conclusions Patients with sarcomas incur repeated events warranting subspecialty PC, which increase toward the end‐of‐life. Increased PC utilization may help decrease suffering and bolster family coping during these episodes. Additional work should further refine if opportunities differ across cancers, and how to incorporate this framework into clinical oncology care to prevent missed opportunities for PC.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 98%

Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Ebelhar

Allen

DeGroote

et al. 2020

Pediatric Blood & Cancer

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“…75,77,83 Interventions that support clinicians to initiate palliative care with families and improve clinical acceptability of specialist palliative care services therefore offer the potential to address these key barriers to access. 82,98 Although there are various initiatives to support the delivery of palliative care within oncology services (e.g. palliative care training, 99,100 communication tools, 101,102 early integration models 26,67,69 ), we know very little about whether these are being implemented in practice and how they might influence referral to specialist palliative care.…”

Section: What This Review Addsmentioning

confidence: 99%

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

et al. 2020

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Background: Specialist paediatric palliative care services are promoted as an important component of palliative care provision, but there is uncertainty about their role for children with cancer. Aim: To examine the impact of specialist paediatric palliative care for children and young people with cancer and explore factors affecting access. Design: A mixed-methods systematic review and narrative synthesis (PROSPERO Registration No. CRD42017064874). Data sources: Database (CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE, PsycINFO) searches (2000–2019) identified primary studies of any design exploring the impact of and/or factors affecting access to specialist paediatric palliative care. Study quality was assessed using The Mixed Methods Appraisal Tool. Results: An evidence base of mainly low- and moderate-quality studies ( n = 42) shows that accessing specialist paediatric palliative care is associated with less intensive care at the end of life, more advance care planning and fewer in-hospital deaths. Current evidence cannot tell us whether these services improve children’s symptom burden or quality of life. Nine studies reporting provider or family views identified uncertainties about what specialist paediatric palliative care offers, concerns about involving a new team, association of palliative care with end of life and indecision about when to introduce palliative care as important barriers to access. There was evidence that children with haematological malignancies are less likely to access these services. Conclusion: Current evidence suggests that children and young people with cancer receiving specialist palliative care are cared for differently. However, little is understood about children’s views, and research is needed to determine whether specialist input improves quality of life.

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“…Evidence indicates that the lack of AYA-specific education/training for clinicians around these issues may be a barrier to timely and effective end-of-life interactions, leaving many trainee clinicians inadequately prepared when they face end-of-life interactions. 46 To remedy this, gold-standard primary palliative care education should be introduced early and integrated throughout professional development, 59 and include a variety of training modalities, including utilizing experiential, online, and group didactic teaching strategies, shared learning between health care disciplines, and incorporating bereaved family members as educators (e.g., as panel members at conferences, or within small-group conversational training seminars with clinicians). 46 Future research identifying the core clinical skills providers feel they need further training in, and the training modalities that they feel will be most useful and relevant to them will be crucial to advancing these clinical efforts.…”

Section: Howmentioning

confidence: 99%

End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

Sansom-Daly

Wakefield

Patterson

et al. 2020

Journal of Adolescent and Young Adult Oncology

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120

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A growing evidence base highlights the negative impact of poor psychosocial care at end-of-life. Adolescents and young adults (AYAs) 15-39 years of age with cancer face unique medical and psychosocial challenges that make them especially vulnerable when treatment is not successful. Although the importance of age-appropriate medical and psychosocial care is internationally recognized for AYAs across the cancer trajectory, there is little guidance on best-practice care and communication practices with AYAs as they approach the end-of-life. We conducted a narrative review and found evidence points to the potential benefits of introducing palliative care teams early in the care trajectory. Research undertaken to date emphasizes the importance of exploring AYAs' preferences around end-of-life issues in a repeated, consistent manner, and highlighted that AYAs may have strong preferences on a range of issues such as being able to stay in their own home, being comfortable and free from pain, and expressing their wishes to loved ones. We highlight a number of best-practice recommendations to guide clinicians around the critical elements of when, who, what, and how end-of-life conversations may be best facilitated with AYAs. Gaps in the evidence base remain, including research focusing on better understanding barriers and facilitators to timely, age-appropriate end-of-life communication for AYAs with different diagnoses, where discordance between AYA-parent preferences exists, and when AYAs die at home versus in hospital. We have proposed a new model to support clinicians and researchers to better conceptualize how interacting individual, familial, and sociocultural factors impact end-of-life communication with AYAs in clinical settings.

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Who is responsible for delivering palliative care to children with cancer?

Cited by 10 publications

References 12 publications

Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Defining palliative opportunities in pediatric patients with bone and soft tissue sarcomas

Specialist paediatric palliative care for children and young people with cancer: A mixed-methods systematic review

End-of-Life Communication Needs for Adolescents and Young Adults with Cancer: Recommendations for Research and Practice

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