Although guidelines call for the presence of pediatric ethics consultation services (PECS), their existence in children's hospitals remains unquantified. This study determined the prevalence of PECS ...in children's hospitals and compared the practice environments of those with versus without PECS.
The Children's Hospital Association Annual Benchmark Report survey from 2020 and PECS data were analyzed for the association of PECS with domains of care.
Two hundred thirty-one hospitals received survey requests, with 148 submitted and 144 reachable to determine PECS (62% response rate), inclusive of 50 states. Ninety-nine (69%) reported having ethics consultation services. Freestanding children's hospitals (28% of all hospitals) were more likely to report the presence of PECS (P <.001), making up 41% of hospitals with a PECS. The median number of staffed beds was 203 (25th quartile 119, 75th quartile 326) for those with PECS compared with 80 for those without (25th quartile 40, 75th quartile 121). Facilities with palliative care, higher trauma ratio, intensive care, and comprehensive programs were more likely to have PECS. Academic affiliation was associated with PECS presence (P <.001). Settings associated with skilled nursing facilities or long-term care programs were not more likely to have PECS. Hospitals designated as federally qualified health centers (P = .04) and accountable care organizations (P = .001) were more likely to have PECS.
Although PECS function as formal means to clarify values and mitigate conflict, one-third of children's hospitals lack PECS. Future research is needed to understand barriers to PECS and improve its presence.
The COVID-19 pandemic has had a dramatic impact on palliative care delivery and patient experiences. Less is known about the experiences and responses of palliative care clinicians.
We aimed to ...describe the pandemic's impact on pediatric palliative care clinicians' personal and professional well-being.
The Palliative Assessment of Needed DEvelopments & Modifications In the Era of Coronavirus (PANDEMIC) cross-sectional online survey was posted on 7 professional listservs between May and June 2020. We conducted a conventional content analysis of written responses to three open-ended questions regarding the lasting impact of COVID-19.
Of 207 multidisciplinary respondents from 80 US cities, 148 (71%) provided written responses to open-ended questions, and 62 responses (42%) were related to personal, professional, or existential well-being. These responses were sorted into 4 major categories: personal burdens, professional burdens, personal benefits, and professional benefits. Respondents described burdens more commonly than they did benefits (67% vs. 33% of comments, respectively). Personal burdens related to increased fear and uncertainty, fear of bringing the virus home, and a sense of collective grief. Professional burdens included a sense of exhaustion, a challenge with work-life balance, personal experiences with colleagues infected with the virus, and considerations of leaving health care altogether. Personal benefits included lessons learned, an evolving sense of what matters, and improved work-life balance. Professional benefits included opportunities for professional development and a sense of professional purpose.
Pediatric palliative care clinicians perceive a breadth of impacts from the COVID-19 pandemic. Ongoing clinician assessment is important as the pandemic continues.
Lack of availability of community-based pediatric palliative care and home-based hospice services for children limits care location options for families. For many families from rural regions, ...hospital-based care models may be perceived as the only viable choice due to geographic gaps in service coverage. Gaps exist not only in access to these key services but also in service quality without national pediatric service standards. While families from rural regions may express a goal to be home with their child for relational and communal care purposes the current setting of services may limit the feasibility of home-based care. Several potential pediatric systems changes (workforce, finance, policy) have the capacity to create and sustain a care model that allows a child with complex, chronic, or life-limiting diagnoses to experience a home other than the hospital. The existence of community-based pediatric palliative and pediatric home-based hospice services with a sustained workforce and high-quality national standard for children would bolster the ultimate congruence of a family's preference with actual care choices. IMPACT: Families of children with life-limiting diagnoses may express a preference to be home together. Disparities in access to community-based pediatric palliative care and hospice exist for children, particularly in rural regions. These gaps may translate into families experiencing hospital-based settings as the only feasible care model which may result in care escalations and medicalization. Expansion of the community-based workforce and development of pediatric-specific standards for key palliative services would increase home-based care options for families. This paper acknowledges the pediatric palliative and hospice availability crisis in rural regions and urges for improved access to high-quality, community-based services for children.
BACKGROUNG AND OBJECTIVES
This study determined the prevalence of PPC programs in the United States and compared the environment of children’s hospitals with and without PPC programs.
METHODS
...Analyses of the multicenter Children’s Hospital Association Annual Benchmark Report 2020 survey for prevalence of PPC programs and association with operational, missional, educational, and financial domains.
RESULTS
Two hundred thirty-one hospitals received Annual Benchmark Report survey requests with 148 submitted (64% response rate) inclusive of 50 states. One hundred nineteen (80%) reported having a PPC program and 29 (20%) reported not having a PPC program. Free-standing children’s hospitals (n = 42 of 148, 28%) were more likely to report the presence of PPC (P = .004). For settings with PPC programs, the median number of staffed beds was 185 (25th quartile 119, 75th quartile 303) compared with 49 median number of staffed beds for those without PPC (25th quartile 30, 75th quartile 81). Facilities with higher ratio of trauma, intensive care, or acuity level were more likely to offer PPC. Although palliative care was associated with hospice (P <.001) and respite (P = .0098), over half of facilities reported not having access to hospice for children (n = 82 of 148, 55%) and 79% reported not having access to respite care (n = 117 of 148).
CONCLUSIONS
PPC, hospice, and respite services remain unrealized for many children and families in the United States. Programmatic focus and advocacy efforts must emphasize creation and sustainability of quality PPC programs in smaller, lower resourced hospitals.
The role of aromatherapy in supportive symptom management for pediatric patients receiving palliative care has been underexplored. This pilot study aimed to measure the impact of aromatherapy using ...validated child-reported nausea, pain, and mood scales 5 minutes and 60 minutes after aromatherapy exposure.
The 3 intervention arms included use of a symptom-specific aromatherapy sachet scent involving deep breathing. The parallel default control arm (for those children with medical exclusion criteria to aromatherapy) included use of a visual imagery picture envelope and deep breathing. Symptom burden was sequentially assessed at 5 and 60 minutes using the Baxter Retching Faces scale for nausea, the Wong-Baker FACES scale for pain, and the Children's Anxiety and Pain Scale (CAPS) for anxious mood. Ninety children or adolescents (mean age 9.4 years) at a free-standing children's hospital in the United States were included in each arm (total n = 180).
At 5 minutes, there was a mean improvement of 3/10 (standard deviation SD 2.21) on the nausea scale; 2.6/10 (SD 1.83) on the pain scale; and 1.6/5 (SD 0.93) on the mood scale for the aromatherapy cohort (p < 0.0001). Symptom burden remained improved at 60 minutes post-intervention (<0.0001). Visual imagery with deep breathing improved self-reports of symptoms but was not as consistently sustained at 60 minutes.
Aromatherapy represents an implementable supportive care intervention for pediatric patients receiving palliative care consults for symptom burden. The high number of children disqualified from the aromatherapy arm because of pulmonary or allergy indications warrants further attention to outcomes for additional breathing-based integrative modalities.
Bibliotherapy utilizes storybook readings to foster expressive therapy for children. Storybooks represent a readily available yet underutilized support tool in pediatric hematology and oncology care ...settings. Storybooks can help explain a new diagnosis, treatment plan, body changes, and identity adjustment in a relatable way for patients to then have a safe space to process questions and emotions. This paper serves as a “how to” guide for clinicians to consider bibliotherapy for a patient, select suitable book options, and introduce and incorporate bibliotherapy as part of comprehensive care.
Requests for Directed Blood Donations Weaver, Meaghann S; Yee, Marianne E M; Lawrence, Courtney E ...
Pediatrics (Evanston),
04/2023, Letnik:
151, Številka:
4
Journal Article
Recenzirano
This Ethics Rounds presents a request for directed blood donation. Two parents feel helpless in the setting of their daughter's new leukemia diagnosis and want to directly help their child by ...providing their own blood for a transfusion. They express hesitancy about trusting the safety of a stranger's blood. Commentators assess this case in the setting of blood as a scarce community resource during a national blood shortage. Commentators review the child's best interest, future risks, and harm-benefit considerations. Commentators recognize the professional integrity, humility, and courage of the physician to admit his own lack of knowledge on the subject and to seek help rather than claim directed donation is not possible without further investigation into options. Shared ideals such as altruism, trust, equity, volunteerism, and solidarity are recognized as values relevant to sustainment of a community blood supply. Pediatric hematologists, a blood bank director, transfusion medicine specialists, and an ethicist conclude that directed donation is only justified by lower risks to the recipient in particular circumstances.
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