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

·         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

·         Terminal care – symptom control, psychosocial support

·         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 attachments

·         practical classes

Evaluation method

·         assessment through a case study:

o   PowerPoint presentation (10 minutes) and discussion;

o   poster presentation (90x 140 cm, readable at 2 meters).

Subject matter

1.       Principles of pediatric palliative care;

2.       Palliative care needs in Pediatrics;

3.       Nacional and international scenario;

4.       Servisse 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.   Interinstitucional articulation;

15.   Experience of the Pediatrics Departament of the Portuguese Institute of Oncology - Lisbon;

16.   Experience of the Hospital de Dona Estefânia, CHLC;

17.   Experience of the Neonatal Intensive Care Unit of the Hospital S. Francisco Xavier, CHLO;

18.   Experience of the pediatric homecare teams;

19.   Clinical case discussions.

Programs

Programs where the course is taught: