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Module 1. Engaging with Children and Families
This introductory module aims to enhance the ability of health
care professionals to understand, support and engage effectively
with children with life-threatening conditions, their parents and
loved ones. This module has video trigger tapes, discussion questions
and readings that focus on three topics: reflecting on core principles
in pediatric palliative care; discovering what matters to families;
and incorporating the perspectives of children and families in treatment.
Participants explore their concept of professional roles and obligations
vis-a-vis pediatric palliative care and develop strategies for engaging
effectively with children and families so that care can be tailored
to the particular needs of individual families. They identify institutional
barriers to, and opportunities for, more robust family and child-centered
care near the end of life. [Outline
of Learning Activities]
Module 2. Relieving Pain and Other Symptoms
The goal of this module is to build unequivocal commitment to,
and skill in, assessing, documenting, reassessing and continuously
monitoring patients' pain and other symptoms. This module includes
sessions on the use of developmentally appropriate pain assessment
tools and strategies, as well as practice solving common but complex
clinical problems that require opioid titration, equianalgesic conversion,
and complex side effect management. Module 2 begins with three learning
activities that focus on pain assessment, followed by two lecture-oriented
activities on the treatment of pain. The next activity uses a videotape
to models ways to communicate with colleagues and with parents who
may have concerns about opioid addiction and tolerance, and the
final activity focuses on the management of other symptoms at the
end of life. [Outline of
Learning Activities]
Module 3. Analyzing Ethical Challenges in Pediatric End-of-life Decision Making.
The goal of this module is to equip health care practitioners with
the knowledge and skills they will need to support families as they
confront an array of difficult choices often encountered when a
child is gravely ill and unlikely to recover. This module includes
information on key ethical recommendations for guiding decisions
about the withholding or withdrawing of life supports, and presents
a conceptual framework and strategies for handling circumstances
in which parents and clinicians may disagree about goals of care.
Sessions focus on assessing the likely degree of benefit and burden
associated with different treatment (and nontreatment) options,
the importance of honoring parental discretion in decision making,
especially when there are marginal or uncertain benefits associated
with the continuation of life-prolonging treatments, the legitimacy
of including quality of life considerations in goal setting, how
to handle conflicts, and the extent to which mature minors should
be able to guide their own decisions. Other topics include the use
or forgoing of artificial nutrition and hydration as well as ethical
issues relevant to the treatment of pain and suffering, such as
those related to palliative sedation. Participants will sharpen
their ethical reasoning skills, clarify their attitudes toward truth
telling and develop skill at conflict prevention and resolution.
[Outline of Learning Activities]
Module 4. Responding to Suffering and Bereavement
This module aims to enhance the ability of health care professionals to recognize,
validate and respond to suffering in children, parents, and family
members. There are two overarching goals for this module. The first
is to help participants develop a conceptual perspective from which
to understand and respond to the suffering and bereavement experience
of children and families. The second is to help participants understand
how the suffering and bereavement of children and families interconnects
with their own experience as professional caregivers. The module
utilizes video trigger tapes, children's artwork, and music to highlight
the experience of children, family members and professional caregivers.
Seminars offer activities designed to facilitate development of
knowledge, skills and values pertinent to a range of topics, including
loss in chronic illness, parental bereavement, sibling loss, spiritual
pain, and caregiver suffering. [Outline of Learning Activities]
Module 5. Improving Communication and Strengthening
Relationships
The goal of this module is to enhance health care professionals' communication
and relational skills. An introductory lecture provides a summary
of the literature regarding communication in the clinician-patient
relationship, specifically pertaining to what is known about working
with children and families. A conceptual framework will be proposed
that views communication between health care professionals and families
as a cross-cultural undertaking in which the challenge is to understand
and respond to the meaning-making practices of the family. The core
of the module will be a videotape that demonstrates the power of
role play and experiential education for developing and strengthening
clinicians' communication and relational skills. The videotape,
along with adjunctive learning materials, will be designed to provide
children's hospitals with the information they need to build and
implement communication programs within their own institutions.
[Outline of Learning Activities]
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