Abstract Watch: Current thinking in paediatric palliative care and transition to adult care

Barry Ashpole

Barry Ashpole

The palliative care (PC) needs of children living with a terminal or life-limiting illness are unique. Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist from Ontario, Canada, who contributes a bi-annual post for the blog. Here, he presents a selection of articles that focus on ‘current thinking’ in paediatric PC. There is also a selection of articles specific to end-of-life care for adolescents and their transition to adult care.

Paediatric Palliative Care

Development of a pediatric palliative care curriculum and dissemination model: Education in Palliative & End-of-Life Care (EPEC) pediatrics

JOURNAL OF PAIN & SYMPTOM MANAGEMENT| Online – 17 June 2019 – The 24-module curriculum is designed to teach primary palliative care and is delivered in a combination of online learning and in-person, face-to-face sessions. A one-day workshop was developed to teach EPEC-Pediatrics graduates to teach future “trainers,” thus becoming “master facilitators.” Between 2012-2019 a total of 867 EPEC-pediatric trainers and 75 master facilitators from 58 countries participated in 17 become an EPEC-pediatrics-trainer conferences and three professional development workshops. Abstract (with link to references)

Of related interest:

  • ‘Pediatric palliative care in the multi-cultural context: Findings from a workshop conference,’ Journal of Pain & Symptom Management, 2019;57(4):846-855. Full text

When a child dies in the pediatric intensive care unit: Practice recommendations from a qualitative study of bereaved parents

PEDIATRIC CRITICAL CARE MEDICINE| Online – 14 June 2019 – During the dying phase, parents suggested private, demedicalized rooms, familiar staff members, and support to leave the hospital. Recommendations for care after death focused on the provision of ongoing support from the hospital or local bereavement services, as well as improved information delivery. Recommendations range from simple practice changes to larger organizational modifications, offering avenues for change and improvement on an individual healthcare provider level and within individual pediatric intensive care units. Abstract

Of related interest:

  • ‘Impact of specialized pediatric palliative care programs on communication and decision-making,’ Patient Education & Counseling, 2019;102(8):1404-1412. Abstract
  • ‘Parental experiences of end-of-life care decision-making for children with life-limiting conditions in the paediatric intensive care unit: A qualitative interview study,’BMJ Open, published online 9 May 2019. Full text
  • ‘Stopping the momentum of clinical cascades in the pediatric intensive care unit: Intentional responses to the limits of medicine,’ Journal of Palliative Care, published online 29 May 2019. First page view
  • ‘Parental perspectives on roles in end-of-life decision making in the pediatric intensive care unit: An integrative review,’ Journal of Pediatric Nursing, 2019;46 (3):18-25. Abstract

Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: A qualitative study

EUROPEAN JOURNAL OF PEDIATRICS, 2019;178(7):1075-1085. This study reports in detail about the most prominent parental experiences when caring for a child with a life-limiting or life-threatening diseases (LLD/LTD), both malignant and non-malignant, at home. It also investigates parents coping strategies in adjusting to the situation. Parenting and caring for a child with a LLD/LTD require continuous management of anxiety and loss. At the same time, parents work towards a new normality and gradually take control to arrange the best care for their child and family. Full text

Of related interest:

  • ‘Achieving consensus: Advice for paediatricians and other health professionals on prevention, recognition and management of conflict in paediatric practice,’ Archives of Disease in Children, 2019;104(5): 413-416. Full text
  • ‘Pediatric palliative care in the medical neighborhood for children with medical complexity,’ Families, Systems & Health, 2019;37(2):107-119. Abstract.
  • ‘Finding hope and healing when cure is not possible’ Mayo Clinic Proceedings, 2019;94(4):677-685. Full text
  • ‘“What if?”: Addressing uncertainty with families,’ Pediatric Blood & Cancer, 2019;66(6):e27699. Abstract

The arc of generational care: A case series considering grandparent roles and care needs in pediatric palliative care

JOURNAL OF SOCIAL WORK IN END-OF-LIFE & PALLIATIVE CARE| Online – 22 June 2019 – Children receiving palliative care (PC) services are held within the context of a family and often within multiple-generational arms. The purpose of this case series paper is to recognize grandparents’ roles in their family system from a personal, cultural, and anthropological perspective; to explore emotions and experiences as applies to grandparents of children receiving PC; and to provide tangible insight into caring well for families across the generational arc. Abstract

Let’s talk with children about life-threatening diseases

THE LANCET, 2019;393(10176):1072. There is little evidence-based practical guidance grounded in an understanding of the developmental stage of a child and the need for, and effect of, information about life-threatening conditions. Even less evidence is available on how best to communicate with children when their parents have a life-threatening disease. Two articles in this week’s issue of The Lancet review the literature and provide communication principles and examples based on an integration of the available research and the authors’ own clinical and academic perspective.1,2 Full text.

  1. ‘Communication with children and adolescents about the diagnosis of their own life-threatening condition.’ Summary (with list of references).
  1. ‘Communication with children and adolescents about the diagnosis of a life-threatening condition in their parent.’ Summary (with list of references).

Of related interest:

  • ‘Parallel planning and the paediatric critical care patient,’ Archives of Disease in Childhood, published online 31 January 2019. Abstract
  • ‘Who decides what is in the child’s “best interest”?’ Journal of Hospice & Palliative Nursing, 2019;21(1): 8-13. Abstract‘Gaps in the implementation of shared decision-making: Illustrative cases,’ Pediatrics, 2019;143(3): e20183055. Abstract

Virtual reality: Endless potential in pediatric palliative care

JOURNAL OF PALLIATIVE MEDICINE| Online – 6 June 2019 – Clinicians must use all the tools at their disposal. Virtual reality is quickly becoming a useful tool in many areas of medicine, including surgical planning, simulation training, rehabilitation, and pain prevention and treatment. Recently it has been used in the adult palliative care (PC) population for symptom management, and memory and legacy creation. The authors present a case report for, what they believe to be, the first time in the pediatric PC population. Abstract

Estimating neurologic prognosis in children: High stakes, poor data

JAMA NEUROLOGY| Online – 13 May 2019 – Parents of critically ill children often ask their physicians to predict their child’s future so that they can make medical decisions and plan for his or her life. The stakes can be high: some parents must decide whether to resuscitate a child if he or she deteriorates, whether to remove the ventilator in the face of brain injury, or how to balance the possibilities of death and life with future disability. Other families face less acute decisions, such as whether to relocate to a home with disability access or transition to a different type of school. Abstract.

Oncology nurse managers’ perceptions of palliative care and end-of-life communication

JOURNAL OF PEDIATRIC ONCOLOGY NURSING, 2019;36(3):178-190. Findings of this study include participants’ experience of “fostering a caring climate,” which includes: 1) Imprint of initial grief experiences and emotions; 2) Constant vigilance (assessing and optimizing family-centered care); and, 3) Promoting a competent, thoughtful, and caring workforce. Findings indicate nurse managers draw on their own experiences and their management knowledge to address the palliative care/end-of-life care learning needs of nursing staff and patient/family needs. Abstract

Of related interest:

  • ‘The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital,’ Death Studies, published online 4 March 2019. Abstract

The benefits and burdens of pediatric palliative care and end-of-life research: A systematic review

JOURNAL OF PALLIATIVE MEDICINE| Online – 5 March 2019 – A tension exists between the desire to enhance palliative and end-of-life (EoL) care for children and their families and the need to protect these potentially vulnerable populations from untoward burdens. The lack of published exploration into the benefits and burdens of those asked to take part in research and those conducting the research is striking. There is a need for implementation of a validated benefit/burden instrument or interview measure as part of pediatric palliative and EoL research design and reporting. Abstract.

Of related interest:

  • ‘Palliative care and paediatric cardiology: Current evidence and future directions,’ The Lancet: Child & Adolescent Health, 2019;3(7):502-510. Abstract (with list of references)

Bereavement counselling for healthcare workers in the aftermath of child death

IRISH MEDICAL JOURNAL, 2019;112(5). This study highlights the need to improve staff awareness of the counselling services that are available and the need to proactively approach staff to offer these supports after paediatric patient deaths and other serious adverse events. Ideally the scope of bereavement counselling could be extended to allowing time for self-healing activities for individuals while at work. The literature shows that meditation, journaling, prayer, and quiet time may be therapeutic for healthcare workers. Full text

End-of-life Care in Adolescents

When adolescents may die

JOURNAL OF CLINICAL ETHICS, 2019;30(2):77-88. The author discusses how clinicians might best treat adolescents who may die. He discusses: 1) These patients’ cognition, emotional tendencies, and sensitivity to interpersonal cues; 2) Their parents’ feelings of loss and guilt and their clinicians’ risk of imposing their own moral views without knowing this; 3) The practical concerns of helping these patients gain or regain resilience and to identify strengths they have had in the past; and, 4) Who, among staff, might be best able to do this. Abstract

Healthcare stakeholder perspectives regarding the role of a patient navigator during transition to adult care

BMC HEALTH SERVICES RESEARCH| Online – 17 June 2019 – Consistent definitions, key tasks, roles and responsibilities are lacking in guiding the scope of practice and the implementation of patient navigators (PNs). This study explores how PNs can support young people with special healthcare needs and their families to successfully transfer from pediatric to adult care. The findings will help guide development of a transition navigator role in a diverse health system and will inform future interventional trials to evaluate the effectiveness of PN programs. Full text

Supporting the healthcare transition from adolescence to adulthood in the medical home

PEDIATRICS, 2018;142(5):e20182587. This report provides practice-based quality improvement guidance on key elements of transition planning, transfer and integration into adult care for all youth and young adults. It includes sections on definition and guiding principles, the status of healthcare transition preparation among youth, barriers, outcome evidence, recommended healthcare transition processes and implementation strategies using quality improvement methods, special populations, education and training in pediatric onset conditions, and payment options. Full text.

Of related interest:

  • ‘Evaluation of a pilot service to help young people with life-limiting conditions transition from children’s palliative care services,’ International Journal of Palliative Nursing, 2018;24(7):322-332. Abstract
  • ‘Conflicting realities experienced by children with life‐limiting and life‐threatening conditions when transitioning to adult health services,’ Journal of Advance Nursing, 2018;74(12):2871-2881. Abstract
  • ‘Shared decision making’s adolescence and transition into adulthood,’ Patient Education & Counseling, 2018;101(10):1723-1724. Abstract (with link to references)

Additional Resources

The Children & Youth Grief Network of Peel Region (Ontario, Canada) recently published a review of the literature focused on the many different aspects of grief and bereavement among children and young people. See ‘End-of-life care in children and adolescents’ (pp.9-10.) The main focus is on evidence-based studies published in peer-reviewed journals, reflecting current thinking on the many issues identified. Download/view here

More about the author
Barry R. Ashpole is a Communications Consultant, Educator and Media Specialist. He publishes Media Watch, a weekly compilation of international articles and reports in the fields of healthcare, social services, ethics and law. Barry also teaches frontline care providers about different aspects of palliative care and facilitates workshops on care planning. You can access Media Watch on the International Palliative Care Resources Center website.

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