Pediatric palliative care
Objectives
Definition of pediatric palliative care
Principles of palliative care
Differences from adults
Levels of provision
Identification of the target population in Pediatrics
Illness trajectories in Pediatrics
Models of service organization
Needs of the child & family
Symptom control
Individual care plans
Communication with child & family
Informed decision making
Communicating bad news
Grief and bereavement: phases, tasks and support
Protection and social benefits for the child with chronic illness & family
Principles and organization of educational support
Interdisciplinary collaboration: the role of the doctor in teamwork
Interinstitutional collaboration (including tertiary primary care)
Homecare
Transitioning to adult services
Legal issues
Ethical questions limiting/withdrawing therapies/interventions; terminal sedation; decision making
End of life and terminal care
Role of non-governmental organizations in provision of pediatric palliative care
General characterization
Code
11219
Credits
3
Responsible teacher
Mestre Ana Forjaz Lacerda
Hours
Weekly - Available soon
Total - Available soon
Teaching language
Portuguese
Prerequisites
Bibliography
www.cuidandojuntos.org.pt
Carter BS, Levetown M, Friebert S. Palliative care for infants, children and adolescents - a practical handbook. 2ª ed. Baltimore, 2011.
Cuidados paliativos pediátricos uma reflexão. Que futuro em Portugal? 2013, Fundação Calouste Gulbenkian.
FACTS. Cuidados paliativos para recém nascidos, crianças e jovens. Fondazione D'Onlus. Roma, 2009.
IMPaCCT - standards for pediatric palliative care in Europe. Eur J Palliat Care 2007; 14 (3): 109-14.
Larcher V et al. Making decisions to limit treatment in life-limiting and life-threatening conditions in children: a framework for practice. Arch Dis Child 2015; 100 (suppl 2): s1-s23.
Levine D et al. Best practices for pediatric palliative cancer care: a primer for clinical providers. J Supp Oncol 2013; 11(3): 114-125.
WHO. Guidelines on the pharmacological treatment of persisting pain in children with medical illnesses. Geneva, 2012.
Teaching method
In this Unit the following methods will be used:
lectures;
tutorials (clinical case discussions);
clinical attachments (according to the agenda of both lecturers and students homecare with the UMAD HDE);
practical classes (communication training).
Evaluation method
The usual methods of evaluation are:
tests (two, multiple choice);
case study:
slide presentation (10 minutes) and discussion;
poster presentation.
However, in the current context of the COVID-19 pandemic, which may preclude clinical contacts as happened in the school year 2019-2020, there may be the need to change this. In this case evaluation will be done through:
written essay answering a question;
written care plan following a clinical vignette:
slide presentation (10 minutes) and discussion;
written self-reflection.
Subject matter
1. Principles of pediatric palliative care;
2. Palliative care needs in Pediatrics;
3. National and international scenario;
4. Service organization;
5. Care planning;
6. Ethical questions in pediatric palliative care;
7. Communication with the child and family;
8. Health and disease in childhood;
9. Grief;
10. Social support;
11. Role of school and education;
12. Role of play;
13. Interdisciplinary articulation;
14. Interinstitutional articulation;
15. Experience of the Pediatrics Department of the Portuguese Institute of Oncology - Lisbon;
16. Experience of the Hospital de Dona Estefânia, CHULC;
17. Experience of the Neonatal Intensive Care Unit of the Hospital S. Francisco Xavier, CHLO;
18. Experience of the pediatric homecare teams;
19. Homecare;
20. Clinical case discussions.