Changing the Landscape of the Neighborhood: The Expanding Role of the Pediatric Palliative Advanced Practice Registered Nurse
child; article; human; palliative therapy; pharmacology; adolescent; evidence based practice; emergency care; medical society; consensus; special situation for pharmacovigilance; neighborhood; registered nurse
There is a dearth of information on the role of the pediatric palliative advanced practice registered nurse (APRN) reported in the literature, and yet, the role is expanding. Advances in technology and health care are helping children with medical complexity live longer, and the demand for pediatric palliative care is growing. As programs expand to meet this need, there are new opportunities for pediatric palliative APRNs to practice outside acute care consultative models, within large children's hospitals. The aim of this article was to describe the expanding role of the pediatric palliative APRN using a progressive case study that describes how these expanding roles can collaborate using evidence-based practice and expert consensus to define their roles. If pediatric palliative APRNs hesitate to define their practice, others will define it for them.
Sartor N; Bass AK; Overstreet K
Journal of Hospice and Palliative Nursing
2024
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/10.1097/NJH.0000000000001018" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000001018</a>
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>
Parent-Reported Experience Measures of Care for Children with Serious Illnesses: A Scoping Review
Child Care; Childhood Disease; Chronic Disease; Parental Attitude; Patient-Reported Outcome; Personal Experience; Caregiver Support; Child; Emergency Care; Empowerment; Health Care Delivery; Health Care Quality;Hospice Care; Hospital Care; Hospitalized Child; Human; Long Term Care; Neonatal Intensive Care Unit; Palliative Therapy; Review; Shared Decision Making; Systematic Review; Terminal Care
OBJECTIVE: This scoping review aimed to: 1) identify parent-reported experience measures (PaREMs) for parents of children with serious illnesses from peer-reviewed literature, 2) map the types of care experience being evaluated in PaREMs, 3) identify and describe steps followed in the measure development process, including where gaps lie and how PaREMs may be improved in future efforts, and 4) help service providers choose a PaREM suitable for their service delivery setting and strategy. DATA SOURCES: Relevant articles were systematically searched from PubMed, CINAHL, and Scopus EBSCOhost databases until June 10, 2021, followed by a manual reference list search of highly relevant articles. STUDY SELECTION: Abstracts were screened, followed by a full-text review using predetermined inclusion and exclusion criteria. DATA EXTRACTION: A standardized data extraction tool was used. DATA SYNTHESIS: Sixteen PaREMs were identified. There were large variances in the development processes across measures, and most have been developed in high-income, English-speaking Western countries. Most only assess the quality of acute inpatient care. Few measures can be used by multiple service providers or chronic care, and many do not capture all relevant domains of the parent experience. CONCLUSION(S): Service providers should integrate PaREMs into their settings to track and improve the quality of care. Given the multidisciplinary nature of pediatric care and the often-unpredictable disease trajectories of seriously ill children, measures that are applicable to multiple providers and varying lengths of care are essential for standardized assessment of quality of care and coordination among providers. To improve future PaREM development, researchers should follow consistent and methodologically robust steps, ideally in more diverse sociocultural and health systems contexts. Future measures should widen their scope to be applicable over the disease trajectory and to multiple service providers in a child's network of care for a comprehensive evaluation of experience.Copyright © 2022 Lippincott Williams and Wilkins. All rights reserved.
Ang FJL; Finkelstein EA; Gandhi M
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000002996" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002996</a>
High-intensity end-of-life care among children, adolescents, and young adults with cancer who die in the hospital: A population-based study from the French national hospital database
adolescent; adolescents; adult; article; cancer; cancer chemotherapy; cancer diagnosis; cancer patient; child; children; cohort analysis; controlled study; emergency care; emergency ward; end of life; female; France; hematologic malignancy; hospitalization; human; intensive care unit; major clinical study; male; multicenter study; outcome assessment; palliative care; palliative therapy; retrospective study; terminal care; time of death; young adult; young adults
Background: Efforts to improve the quality of end-of-life (EOL) care depend on better knowledge of the care that children, adolescents, and young adults with cancer receive, including high-intensity EOL (HI-EOL) care. The objective was to assess the rates of HI-EOL care in this population and to determine patient- and hospital-related predictors of HI-EOL from the French national hospital database. Method(s): This was a population-based, retrospective study of a cohort of patients aged 0 to 25 years at the time of death who died at hospital as a result of cancer in France between 2014 and 2016. The primary outcome was HI-EOL care, defined as the occurrence of >=1 chemotherapy session <14 days from death, receiving care in an intensive care unit >=1 time, >1 emergency room admission, and >1 hospitalization in an acute care unit in the last 30 days of life. Result(s): The study included 1899 individuals from 345 hospitals; 61.4% experienced HI-EOL care. HI-EOL was increased with social disadvantage (adjusted odds ratio [AOR], 1.30; 95% confidence interval [CI], 1.03-1.65; P =.028), hematological malignancies (AOR, 2.09; 95% CI, 1.57-2.77; P <.001), complex chronic conditions (AOR, 1.60; 95% CI, 1.23-2.09; P =.001) and care delivered in a specialty center (AOR, 1.70; 95% CI, 1.22-2.36; P =.001). HI-EOL was reduced in cases of palliative care (AOR, 0.31; 95% CI, 0.24-0.41; P <.001). Conclusion(s): A majority of children, adolescents, and young adults experience HI-EOL care. Several features (eg, social disadvantage, cancer diagnosis, complex chronic conditions, and specialty center care) were associated with HI-EOL care. These findings should now be discussed with patients, families, and professionals to define the optimal EOL. Copyright © 2019 American Cancer Society
Revon-Riviere G; Pauly V; Baumstarck K; Bernard C; Andre N; Gentet J C; Seyler C; Fond G; Orleans V; Michel G; Auquier P; Boyer L
Cancer
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/10.1002/cncr.32035" target="_blank" rel="noreferrer noopener">10.1002/cncr.32035</a>
Pediatric palliative care-child life beyond the hospital
bereavement; ceremony; child; child parent relation; childhood; conference abstract; controlled study; coping behavior; education; emergency care; health care need; home visit; human; memory; palliative therapy; psychosocial care; respite care; sibling; skill; voice
Program Goals: Historically Child Life Specialists (CCLS) have done the majority of their work in healthcare settings such as pediatric acute care hospitals and clinics. As children are living longer with chronic diseases, CCLS are using their knowledge and skills to provide innovative care in Pediatric Palliative Care and home settings. Evaluation: Using fundamental skills of therapeutic relationship building and play-based communication, CCLS are able to assess needs and provide interventions that meet the unique needs of each child and family member throughout their continuum of care. In this setting, we have the freedom of time, often over a period of several months and even years. We may spend time with the patient/ family during respite care, home visits, holiday events and other occasions. The Child Life Assessment includes factors such as the child's growth and development, physical strengths and limitations, diagnosis, treatment, communication methods, coping skills, family systems, cultural beliefs, community support/resources and other health care, family and child variables. First and foremost our goal is to let the child be a child and have everyone understand and support the strengths of each child. This relationship specifically allows each child and family to establish goals of care unique to their child and advocate well throughout the continuum of care. CCLS can then offer support and maintain the child's developmental milestones despite their medical challenges. The CCLS can also reaffirm the child's life, life review and life closure when the time is right. Also important, CCLS can help siblings to have a voice that is respected and honored in the family and facilitate opportunities to continue this role throughout their childhood. We can also support and nurture parenting through the tough times and as developmental change occurs with both affected children and their siblings. CCLS provide psychosocial support to facilitate expression of thoughts and feelings, self-expression, legacy leaving and memory making. We involve children in discussions and decisions about their medical condition and treatment when medically appropriate, and provide tools to enhance their coping strategies. We provide bereavement opportunities for the dying child and the whole family.
Case C; Fisher J M
Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Quality of end of life care in adolescent and young adults with cancer in Japan
soft tissue; adolescent; major clinical study; retrospective study; cancer patient; cancer chemotherapy; cancer diagnosis; health care personnel; medical record; time of death; conference abstract; human; female; male; adult; terminal care; young adult; palliative therapy; Japan; brain; solid malignant neoplasm; bone; emergency care
Introduction About 4% of all cancers occur in adolescent and young adults (AYA) population in Japan. Quality and intensity of end-of-life (EOL) care in this population vary among different nationalities or cultures. Objectives We aimed to evaluate quality of EOL care in Japanese AYA patients. Methods We retrospectively reviewed electric medical record of AYA patients died from Jan 2013 to Dec 2017 in our hospital. Patients were eligible if they were aged 15-39 years at the time of death. Results A total of 114AYA patients were reviewed. These patients were consisted of 50 men (44%) and 64 women (56%). Median age (interquartile range) was 32 (28-34) years. Cancer types included bone/soft tissue (n=23, 20%), brain (n=10, 9%), hematological (n=5, 4%), and other solid tumor (n=76, 67%). Most patients were informed of their cancer diagnosis and disease condition when they started treatment. However, preference of EOL care was discussed in 37 (33%) of patients before the last 30 days of life. 23 patients (20%) received chemotherapy during the last 14 days of life. 6 (5%), 19 (17%), and 82 (72%) patients died at home, palliative care unit, and acute care unit, respectively. Median days spent at home in the last 30 days of life was 5 (0-17) days. Conclusions There was a little population who could discuss EOL care in advance based on AYA patients' wishes. Better understanding of EOL care is needed in both health care providers and care givers to improve quality of EOL care in AYA population.
Tsumura A; Noguchi-Abe K; Ishida Y
Supportive Care in Cancer
2018
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
Effectively using communication to enhance the provision of pediatric palliative care in an acute care setting
Emergency Care; Palliative Therapy; Pediatrics; Child; Human
The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use of a communication tool provides documentation for conversations, treatment plans, and specific desires related to care. This paper describes communication theory, portrays the use of this theory to develop a communication tool, and illustrates the use of this tool by multidisciplinary members of a healthcare team to provide pediatric palliative care.
Hubble R; Trowbridge K; Hubbard C; Ahsens L; Ward-Smith P
Journal of Multidisciplinary Healthcare
2008
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/10.2147/JMDH.S3854" target="_blank" rel="noreferrer">https://doi.org/10.2147/JMDH.S3854</a>
A Survey Of Key Opinion Leaders On Ethical Resuscitation Practices In 31 European Countries.
Adult; Cardioulmonary Resuscitation/ethics; Child; Child Preschool; Ethics Medical; Europe; Female; Heart Arrest/therapy; Humans; Leadership; Linear Models; Male; Surveys And Questionnaires; Terminal Care/ethics
Bioethics; Cardiac Arrest; Emergency Care; End-of-life Care; Resuscitation
BACKGROUND:
Europe is a patchwork of 47 countries with legal, cultural, religious, and economic differences. A prior study suggested variation in ethical resuscitation/end-of-life practices across Europe. This study aimed to determine whether this variation has evolved, and whether the application of ethical practices is associated with emergency care organisation.
METHODS:
A questionnaire covering four domains of resuscitation ethics was developed based on consensus: (A) Approaches to end-of-life care and family presence during cardiopulmonary resuscitation; (B) Determinants of access to best resuscitation and post-resuscitation care; (C) Diagnosis of death and organ donation (D) Emergency care organisation. The questionnaire was sent to representatives of 32 countries. Responses to 4-choice or 2-choice questions pertained to local legislation and common practice. Positive responses were graded by 1 and negative responses by 0; grades were reconfirmed/corrected by respondents from 31/32 countries (97%). For each resuscitation/end-of-life practice a subcomponent score was calculated by grades' summation. Subcomponent scores' summation resulted in domain total scores.
RESULTS:
Data from 31 countries were analysed. Domains A, B, and D total scores exhibited substantial variation (respective total score ranges, 1-41, 0-19 and 9-32), suggesting variable interpretation and application of bioethical principles, and particularly of autonomy. Linear regression revealed a significant association between domain A and D total scores (adjusted r(2)=0.42, P<0.001).
CONCLUSIONS:
According to key experts, ethical practices and emergency care still vary across Europe. There is need for harmonised legislation, and improved, education-based interpretation/application of bioethical principles. Better application of ethical practices may be associated with improved emergency care organisation.
Copyright © 2016 Elsevier Ireland Ltd. All rights reserved.
Mentzelopoulos SD; Bossaert L; Raffay V; Askitopoulou H; Perkins GD; Greif R; Haywood K; Van de Voorde P; Xanthos T
Resuscitation
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: <a href="https://doi.org/10.1016/j.resuscitation.2015.12.010" target="_blank" rel="noreferrer">10.1016/j.resuscitation.2015.12.010</a>