The American Academy of Pediatrics says that “All general and sub-speciality paediatricians …. need to become familiar and comfortable with the provision of palliative care to children. Residency, fellowship training and continuing education programs should include topics such as palliative medicine, communication skills, grief and loss, managing prognostic uncertainty, and decisions to forgo life-sustaining medical treatment, spiritual dimensions of life and illness, and alternative medicine. Pediatric board and sub board certifying examinations should include questions on palliative care”. 1
Until 2008 in Uruguay (South America), paediatric residents had no paediatric palliative care (PPC) education. Since the creation of the first Paediatric Palliative Care Unit (PPCU) in the environment of the School of Medicine Paediatrics’ Department, progressive introduction of PPC teaching was established 2, 3. At first, isolated classes with main definitions and principles were given. Paediatric residents (PR) showed increasing interest and need of the training. As a consequence, a mandatory course was introduced during the Paediatric residence.
At present, every PR has to undergo a 20-hour course plus a one month rotation in the PPCU.
My motivation in sharing this experience is to facilitate the path for those who have the desire to introduce formal PPC education in other countries and to receive feedback from the net.
To ensure that future paediatricians acquire the knowledge, abilities and attitudes needed to offer palliative care for children in all paediatric settings.
We hope that at the end of the course, when caring for children with life limiting or threatening conditions and their families, the PR will be able to:
• children in need of these caring strategy
• the clinical stage of ill children in relation with death risk
• biological, psychological, social, spiritual and communicational problems
• children and family’s needs, preferences and values
– work in an interdisciplinary team to manage and define care objectives according to children and family’s preferences
– establish medical prescriptions to manage main biological problems
– recognize death as a part of life and the evolution of death concept in children
– recognize stages of children and family bereavement and be able to support them in it
– communicate with children and families in an open, direct empathetic, and collaborative way
– apply bio-ethical principles, international right declarations and national legal frame to make shared decisions
Adult learning characteristics were taken into account. Each activity was begun with exercises trying to uncover and identify previous participant’s conceptions through the use of open questions, clinical cases discussions, videos discussions, etc.
After the opening dynamic, a power point presentation by different members of the PPCU was given. Interaction is valued at all times.
For the class on ‘Communication’, an interview of a mother of a patient was carried out, using a pre-established questionnaire. For this the, “Appreciative inquiry” technique was used, and residents were subsequently asked for oral and written reflections.
Assessment is mandatory. The assessment includes the presentation of a clinical case with ten open questions requiring a narrative response. A pass mark of 80% is required for qualification.
The residents’ satisfaction with the course is evaluated by an online survey using Survey Monkey.
Class topics include:
- General: PPC strategy definitions, ACT classification, clinical reasoning, guiding tool, main problems
- Communication with children and families
- Death in Pediatrics
- Main problems in management
- Nursing care, physiotherapy, and prosthesis management
- Psychosocial problems and spirituality
- End of life management
- Decision making process (bio-ethical and legal frame work)
- Putting learning into practice: clinical case management
Residents’ evaluation of the course
- The theoretical aspects added to daily work – 95% voted ‘Very Acceptable’ or ‘Excellent’
- The course allowed for reflection on professional work – 95% voted ‘Very Acceptable or ‘Excellent’
- Working methodology – 76% voted ‘Very Acceptable or ‘Excellent’
- Literature proposed – 71% voted ‘Very Acceptable or ‘Excellent’
Residents commented that the best part of the course was:
“The scenario to discuss on fundamental topics of our profession usually absent in our training”
“Interactive classes with different professionals and Thiago’s mother’s interview. The whole course was excellent”
“The possibility of sharing and reflecting about our own feelings when dealing with children with life threatening conditions”.
Achievements and challenges
For the first time in the country a residency has a mandatory course in Palliative Care.
It has been implemented in two cities of the country and 80 residents have already undergone this training
Continuing education instances are needed to reinforce and enhance basic learning.
Comments and inputs from people in the ICPCN network are welcome in order to improve this new initiative
- American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative Care for Children (RE 0007) Policy Statement Pediatrics 106(2) En: http://www.aap.org/policy/re0007.html
- Bernadá M, Dall’Orso P, Fernández G, Le Pera V, Gonzalez E, Bellora R y col. Abordaje de un niño con una enfermedad pasible de cuidados paliativos. Arch Pediatr Urug 2010; 81(4): 239-247
- Bernadá M, Dall’Orso P, Fernández G, González E, Dallo M, Caperchione F y col. Características de una población de niños hospitalizados con condiciones de salud pasibles de Cuidados Paliativos Pediátricos. Rev Med Urug 2011, 27(4): 220-227