The Initiative for Pediatric Palliative Care
Module 1. Engaging with Children and Families
The goal of Engaging with Children and Families is 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.
Module 2. Relieving Pain and Other Symptoms
The goal of the Relieving Pain and Other Symptoms 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 which require opioid titration, equianalgesic conversion, and complex side effect management. Part A of Module 2 includes six learning activities that focus on the management of pain. Three of these activities (2.1, 2.2, and 2.3) focus on pain assessment. One activity (2.6) uses a videotape to models ways to communicate with colleagues and with parents who may have concerns about opioid addiction and tolerance. And two activities (2.4 and 2.5) are lectures that focus on the treatment of pain. Part B of Module 2 will include three activities that focus on the management of other symptoms at the end of life.
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.
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.
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.
Module 6. Establishing Continuity of Care (Available Fall 2004)
Parent and clinician interviews conducted as part of the Initiative for Pediatric Palliative Care, as well as research in adult end-of-life care has documented how disruptive poor continuity of care is for patients and families. This module reviews what is known about the negative impact of not having a clearly designated family advocate, who is available to the patient and family throughout the illness trajectory. Sessions focus on institutional steps hospitals can take to create more seamless care across different admissions, across care settings from home to hospital to hospice, as well as the interdisciplinary and team-building skills individual clinicians need to establish more coordinated care for patients and families.An Initiative of the Center for Applied Ethics and Professional Practice at EDC, Inc.
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