Symptom Management in Paediatric Palliative Care
Summary
The intention of this project was to develop leadership skills as a clinical leader and educator in
the subspecialty of pediatric palliative care. I work at Emily’s House, a residential pediatric hospice
located in Toronto, Ontario. Emily’s House provides end of life care, transitional support, symptom
management, and respite care to children and families who are living with serious medical and life
limiting conditions. These children have a wide variety of life limiting conditions including chromosomal
disorders, cancer, or heart disease. The project was orientated to increase my knowledge on symptom
assessment and treatment. This knowledge was translated into revising the education on symptom
management for the current interdisciplinary staff and orientation for new nurses coming into Emily’s
House. In addition, the educational material developed was offered to other pediatric hospices and
palliative care providers in order to develop more leaders in the subspecialty of pediatric palliative care.
During the fellowship, I conducted a literature review, job shadowed and participated in
education. The job shadowing portion was to gain hands on experience with a Nurse Practitioner who
specializes in Pediatric Palliative Care. The education portion included participating in project ECHO on
pain - an interactive education tool through the Hospital for Sick Children. I was able to translate this
knowledge by creating three educational sessions that included information on assessment and
treatment of different symptoms. The symptoms included nausea and vomiting, anxiety, pain, seizures,
dyspnea, delirium, and more. The education sessions focused on cases to apply the information in a
practical way for our patients and families. The education was presented to the interdisciplinary staff at
Emily’s House. Therefore, both my own expertise and knowledge and my colleagues expertise and
knowledge increased in assessing and treating children’s symptoms and communicating effectively with
families.
Outcomes
This project directly affects children and families who are living with serious and life limiting
conditions by allowing them to have the child’s symptoms assessed and communicated effectively. The
education presented to the clinical staff will enable them to assess and treat symptoms with increased
confidence, knowledge and skills. The focus on effective communication will allow families the
opportunity to discuss symptoms in a family and patient centered manner. These efforts will result in
improved quality of life and symptom management for children and their families.
In addition to the outcomes already outlined for my colleagues, the discussions around the
cases increases staff unity and cohesion. The staff at Emily’s House had the opportunity to discuss cases
and symptoms in a constructive environment. The appreciation for the education was outlined in the
positive evaluation forms that were submitted.
The education material was added to the orientation material at Emily’s House. Therefore, the
training will allow the nurses coming into Emily’s House to have the same training. As a result, the same
outcomes for children and families will continue including effective assessment and treatment of
symptoms, effective communication, and increased quality of life.
The organization benefits as more leaders continue to be developed in the subspecialty of
pediatric palliative care. In developing leaders, the broader community will benefit as the education will
be offered to community agencies, acute care facilities and other palliative care providers who are
caring for pediatric palliative patients.
Overall experience
This fellowship opportunity was very positive for me in developing my assessment and
leadership skills. I have worked at Emily’s House for five years and have had the opportunity to work
with children who have a wide variety of life limiting conditions. However, spending these hours
watching, reading, and teaching on this subject has given me more insight into many symptoms.
Symptoms directly affect the daily quality of life of the child and the families. Symptoms provide an
opportunity to talk to the child and family about the child’s diagnosis or functional status. Discussion of
symptoms help to reinforce and develop goals of care for the child and family, a cornerstone in
treatment decisions. In talking about symptoms, you have the opportunity to hear what the child and
family priorities and goals are for this time in their life.
My favorite moment during this fellowship was hearing back from my colleagues on the benefit
the educational sessions provided. When coming onto my shift, a colleague shared that during a
difficult transition where a child was not able to tolerate oral foods and decreased level of consciousness
she was able to use the skills acquired during the educational sessions. My colleague was able to assess
the child’s dysphagia and level of consciousness and in turn, have conversations with the family. These
discussions allowed the family to continue to care for their child with the goals of care they had
outlined. My colleague was able to do this with increased confidence and effectiveness due to the
education that was provided. This fellowship has and will continue to develop leaders in caring for
children with serious medical and life limiting conditions.
