Clinical Training Recommendations for Pediatric Chaplains Caring for Patients with Serious Illness
These training recommendations will help pediatric chaplains address the unique needs of pediatric patients (operationally defined as neonates, perinates, infants, children, adolescents, and young adults) living with serious illness, and their families[1].
Foundational Skills for All Pediatric Chaplains
Examples include clinicians working in primary care, acute care settings, neurology, or pulmonology
Assess the Needs and Concerns of Pediatric Patients and Families
- Know what palliative care is, and how and when to request a consult; if a specialty team isn’t available, serve as the informal facilitator for addressing patient and family palliative care needs through the treating team
- Assess pediatric patients’ spiritual, religious, emotional and relational needs and resources at all stages of disease using developmentally- and culturally-appropriate methods
Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care
- Conduct developmentally- and culturally-appropriate conversations with pediatric patients and families to understand what matters most to them; elicit goals, values, preferences, and concerns of families and patients
- Aid in identifying how social determinants of health[2] influence pediatric patients’ and families’ decision-making in the context of a serious illness, and deliver responsive, unbiased care matched to needs and priorities
- Conduct conversations with pediatric patients and families about core matters specific to serious illness/complex care
- Support shared decision-making that is aligned with patients’ and families’ values and preferences; ensure that pediatric patients have a voice in the discussion, as developmentally appropriate
- Bring team, patients, and families into greater alignment on achievable goals for care; incorporate values into the treatment plan and goals of care
- Liaise with community-based spiritual support as important to the family
Manage Pain and Symptoms
- Using developmentally- and culturally-appropriate tools, assess and address the spiritual/existential underpinnings of distress caused by common symptoms associated with serious illness, and alert the care team to symptom burden
- Be aware of referrals for complex issues of cognitive impairment, intractable symptoms, and safety
- Process grief, support meaning-making
Prevent Crises and Plan Ahead
- Collaborate in developing and implementing plans to support areas such as independent functioning or anticipatory grief; support and build positive coping mechanisms
- Identify community resources that can support pediatric patients living with serious illness and/or complex needs, and their siblings and families
- Communicate with community clergy and/or other resources to ensure continuity of spiritual care
- Support continuity of care across care settings
- Aid in identification of bereavement services as needed
Additional Skills for Pediatric Chaplains Who Focus Primarily on Supporting Pediatric Patients with Serious Illness and/or Complex Needs
Examples include clinicians working in neonatology, complex care, or oncology across care settings
Assess the Needs and Concerns of Pediatric Patients and Families
- Explore the emotional and spiritual dimensions of common sources of distress for pediatric patients with serious illness and/or complex needs
- Perform an assessment, using developmentally- and culturally-appropriate tools that includes:
- Social/spiritual factors encompassing social determinants of health and family functioning
- Emotional and spiritual distress and how they might manifest as physical distress
- Communication challenges for patient and family
- Protective factors
Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care
- Provide developmentally- and culturally-appropriate education and support regarding coping with serious illness
- In collaboration with the medical team, conduct culturally-sensitive advance care planning discussions and complete advance directives if desired; facilitate documentation sharing with extended care team
- Conduct skilled conversations with pediatric patients and families about difficult matters specific to serious illness/complex care
- Conduct skilled conversations/assist team members with navigating grief and team conflict
Manage Pain and Symptoms
- Anticipate and address the spiritual/existential underpinnings of complex symptoms related to specific serious illnesses or conditions along the trajectory, and support meaning-making, hope, belongingness
- Develop the treatment plan to incorporate the values, meaning, and priorities of pediatric patients and family systems, including siblings, to provide person-centered, family-focused and culturally-congruent care
- Identify non-pharmacological and patient-specific interventions for coping with distress, and communicate with the team
Prevent Crises and Plan Ahead
- Provide spiritual support to families and pediatric patients, and connect family with resources as needed
- In the case of terminal illness, provide spiritual support in the range of emotional reactions related to the dying process
Learning Pathways for Pediatric Clinicians
Complete these Learning Pathways to acquire the skills in CAPC's pediatric clinical training recommendations.
View Learning PathwaysThank you to the following clinicians for their review of these recommendations: Allison DeLaney, MA, MPH, BCC-PCHAC
Notes
- ↩ a "Families" is operationally defined to include the adult(s) in the pediatric patient’s support system that oversee and/or contribute to the patient’s care (including parents and other caregivers who may or may not be related by blood).
- ↩ a Defined as “The conditions in which people are born, grow, live, work, and age. These circumstances are shaped by the distribution of money, power, and resources at global, national, and local levels. The social determinants of health are mostly responsible for health inequities, the unfair and avoidable differences in health status seen within and between countries."