Use of Mobile Cold Sheets in Paediatric Hospice Care
cold stress; Hospice Care; Australia; Child; child parent relation; Cold Temperature; conference abstract; cooling; emergency care; funeral home; Hospice Care; Hospice; Human; learning; Memory; nut; posthumous care; practice guideline; privacy; twins; unlicensed drug use
After death care is an essential service offered by paediatric hospices in the time between the death of a child and their funeral or care being transferred to a funeral home. This service allows families time together, privacy and memory making opportunities (Oldham, 2021. ehospice. [Int. Child. ed.], Sept.29) when this may have been limited in the acute care setting or families may have been focused on acute care and interventional management. Resources that are required include family support and clinical teams with experience in after death management, and resources to promote cooling. The length of admission provided to families varies across paediatric hospices and depends on a balance of family preferences, policies of the facility based on experience and condition of the body. As such, any resources that can promote optimal cooling facilitate more time and a better experience for families. Hummingbird House Hospice (Brisbane, Australia) and Acorns (West Midlands, UK) are experienced in after death care. Hummingbird House uses innovative mobile cold sheets to best support after death care, now being adopted as practice in Acorns Hospices with collaboration between services. Mobile cooling sheets are inexpensive, simple to use and do not require coolant to be pumped through like 'cuddle cots' or other cooling mat devices. Advantages include decreased reliance on coolant-based technology (more vulnerable to malfunction), ability to facilitate twins (or other multiple births) being laid together, and increased portability to experience 'normal' parenting such as having time outside in a pram. A case study highlights advantages from a family perspective. The organisational barriers to implementing this new practice have included: justifying additional resources to those already available; need for educational resources and organisational guidelines; lack of local experience; concern about unlicensed use of products and correct storage. We hope to share our experiences and learnings with this new technology to increase the options in care available to bereaved families across the UK.
Mott C; Oldham K
BMJ Supportive and Palliative Care
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/10.1136/spcare-2022-HUNC.207" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.207</a>
Healthcare professionals' views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: A focus group study (DIPPER)
Breakthrough pain; diamorphine; focus groups; opioids; paediatrics; pain management; palliative care; terminal care
Background: Oral morphine is frequently used for breakthrough pain but the oral route is not always available and absorption is slow. Transmucosal diamorphine is administered by buccal, sublingual or intranasal routes, and rapidly absorbed. Aim(s): To explore the perspectives of healthcare professionals in the UK caring for children with life-limiting conditions concerning the assessment and management of breakthrough pain; prescribing and administration of transmucosal diamorphine compared with oral morphine; and the feasibility of a comparative clinical trial. Design/ participants: Three focus groups, analysed using a Framework approach. Doctors, nurses and pharmacists (n = 28), caring for children with life-limiting illnesses receiving palliative care, participated. Result(s): Oral morphine is frequently used for breakthrough pain across all settings; with transmucosal diamorphine largely limited to use in hospices or given by community nurses, predominantly buccally. Perceived advantages of oral morphine included confidence in its use with no requirement for specific training; disadvantages included tolerability issues, slow onset, unpredictable response and unsuitability for patients with gastrointestinal failure. Perceived advantages of transmucosal diamorphine were quick onset and easy administration; barriers included lack of licensed preparations and prescribing guidance with fears over accountability of prescribers, and potential issues with availability, preparation and palatability. Factors potentially affecting recruitment to a trial were patient suitability and onerousness for families, trial design and logistics, staff time and clinician engagement. Conclusion(s): There were perceived advantages to transmucosal diamorphine, but there is a need for access to a safe preparation. A clinical trial would be feasible provided barriers were overcome. Copyright © The Author(s) 2021.
Jamieson L; Harrop E; Johnson M; Liossi C; Mott C; Oulton K; Skene SS; Wong ICK; Howard RF
Palliative Medicine.
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/10.1177/02692163211008737" target="_blank" rel="noreferrer noopener">10.1177/02692163211008737</a>
Components and Principles of a Pediatric Palliative Care Consultation: Results of a Delphi Study
guideline
Abstract Background: Pediatric palliative care is a distinct specialty that requires input from pediatric and palliative medicine specialists to provide comprehensive high-quality care. Consultations undertaken early in a child's illness trajectory, when end-of-life care is not anticipated to be required, enables relationships to be established and may enhance the quality of care provided. Objective: To define optimal components of an early pediatric palliative care consultation. Design: Consensus of an expert group was sought in a five-round Delphi study. Setting/Participants: Based on the literature and existing standards for specialist palliative care, components of an early pediatric palliative care consultation were derived. In rounds 2 and 3, experts from around Australia participated in online surveys to review and prioritize the components and principles. Consensus of survey items was determined by defined criteria. A flowchart was developed in the fourth round and the final round involved review and refinement of the flowchart by the expert group. Results: Nineteen experts participated and prioritized 34 components and principles in the first survey round, and 36 statements in the second survey round. There was consensus from all participants that the first priority of a consultation was to establish rapport with the family, and examples of how to achieve this were defined. Other components of a consultation included: establishing the family's understanding of palliative care; symptom management; an emergency plan; discussion of choices for location of care, and a management plan. Components considered suitable to defer to later consultations, or appropriate to address if initiated by family members, included: spiritual or religious issues; discussion around resuscitation and life-sustaining therapies; end-of-life care; and the dying process. Conclusion: We have provided the first published framework from expert consensus that defines the components and principles of an early pediatric palliative care consultation. This framework will provide guidance for clinical practice as well as being useful for education and research in this area.
2014-07
Bradford NK; Herbert A; Mott C; Armfield N; Young J; Smith A
Journal Of Palliative Medicine
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2014.0121" target="_blank" rel="noreferrer">10.1089/jpm.2014.0121</a>
Principles of a paediatric palliative care consultation can be achieved with home telemedicine
We compared the records of paediatric palliative consultations undertaken face-to-face, with telemedicine consultations undertaken in patients’ homes. A convenience sample of consecutive paediatric palliative care patients was identified from the hospital's palliative care database. A total of 100 consultations was reviewed (50 telemedicine consultations during home visits and 50 face-to-face consultations) according to 14 established principles and components of a paediatric palliative care consultation. In the telemedicine group there was a higher proportion of patients in a stable condition (58% vs 7%), and a lower proportion of patients in terminal phase (2% vs 17%). Discussion about pain and anorexia were significantly more common in the telemedicine group. Discussion about follow up was significantly more common in the telemedicine group (86% vs 56%), whilst resuscitation planning was more common in deteriorating patients receiving inpatient care. All other components and principles of a palliative care consultation were documented equally regardless of method of consultation. The findings confirm that palliative consultations via telemedicine are just as effective as face-to-face consultations in terms of the documented components of the consultation.
2014-10
Bradford NK; Armfield N; Young J; Herbert A; Mott C; Smith AC
Journal Of Telemedicine And Telecare
2014
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1357633X14552370" target="_blank" rel="noreferrer">10.1177/1357633X14552370</a>