Clinical Training Recommendations for Pediatric Advanced Practice Registered Nurses Caring for Patients with Serious Illness

These training recommendations will help pediatric advance practice registered nurses (APRNs) 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 APRNs

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, how and when to request a consult, and how and when to refer for both inpatient and outpatient palliative care
  • Assess pediatric patients’ physical, mental, social, and spiritual well-being at all stages of disease using developmentally- and culturally-appropriate methods
  • Communicate and connect with existing psychosocial and spiritual supports regarding patient and family needs
  • In the absence of an available palliative care team, know how to access appropriate psychosocial support structures

Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care

  • Identify pediatric patients’ surrogate decision-maker(s), if not the parents
  • Conduct developmentally- and culturally-appropriate conversations with pediatric patients and families to understand what matters most to them
  • 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
  • Identify 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
  • Identify additional health care professionals who should be brought into the care team; support patients and families through care coordination across and among providers and sites of care, and help navigate health system barriers
  • Document and disseminate goals of care and advance care plans in the medical record (including EMR); or be familiar with advance care planning documents and know when it is appropriate to ask if these have been completed, and gain a copy of completed documents
  • Know when to consult specialty palliative care for complex decision-making
  • Assess and address the psychosocial needs of siblings
  • Provide continuity of general pediatric care, partner with subspecialists throughout disease and bereavement; provide bereavement support for parents and siblings

Manage Pain and Symptoms

  • Using developmentally- and culturally-appropriate tools, assess and address the distress caused by common symptoms associated with serious illness
  • Assess the feasibility and safety of the care plan with pediatric patients and families
  • Provide written response plans for emergencies or symptom escalation for pediatric patients and their families when appropriate
  • Identify pediatric patients who would benefit from a specialty pediatric palliative care consult for complex or intractable symptoms
  • Assess for/understand the role of integrative therapies in pediatric patients’ care plan
  • Conduct opioid risk assessment if prescribing opioids

Prevent Crises and Plan Ahead

  • Collaborate in planning to return to the community from non-home settings, with consideration for continuity of care across settings
  • Recognize non-physical sources of distress, and collaborate with community-based palliative care, social work, behavioral health, and/or spiritual support
  • Assess functioning, including mental health status, of all family members
  • Recognize and respond to stressors on family's ability to care for the patient
  • Refer for a home safety and accessibility evaluation as needed
  • Confirm access to care plans developed in other domains; periodically revisit as circumstances change, including changes in child development stage, care setting, health status
  • Confirm that respite services are available, family knows how to access
  • Evaluate risks from polypharmacy and consider deprescribing
  • Ensure training opportunities for family in use of technology and equipment in the home, and written back-up plans on how to get support for equipment failures/problems
  • Assist the family in developing a plan for identifying and responding to acute changes in status, including whom to contact (24/7) for escalation of care; document and disseminate the plan in the medical record and other emergency notification systems

Additional Skills for Pediatric APRNs 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

  • Recognize common sources of distress for pediatric patients with serious illness and/or complex needs
  • Perform a comprehensive assessment, using developmentally- and culturally-appropriate tools that includes:
    • Social factors encompassing social determinants of health and family functioning
    • Polypharmacy
    • Emotional and spiritual distress
    • Care coordination
    • Physical symptom distress
    • Communication challenges for patients and families
    • Need for adaptive equipment and home care delivery supplies
  • Assess family readiness to anticipate, identify, and respond to changes in health status and needs

Strengthen the Care Team, Patient, and Family Relationship, and Understand Goals of Care

  • Conduct skilled conversations with families (and pediatric patients as developmentally- and culturally-appropriate) about what to expect and matters specific to serious illness/complex care
  • Engage the interdisciplinary care team (IDT) as needed to provide developmentally- and culturally-appropriate education and support regarding coping with serious illness
  • Conduct culturally-sensitive advance care planning conversations and complete advance directives if desired; facilitate documentation sharing with extended care team
  • Consider legal and ethical aspects of care and be aware of how to consult pediatric ethics experts when needed
  • Develop a basic understanding of pediatric hospice care, including concurrent care[3], and contact palliative care to assist with hospice enrollment when appropriate
  • Identify pediatric patients who are eligible for hospice care, and support them to make the decision whether to enroll; anticipate and help navigate health system barriers
  • With support from other members of the IDT, provide assistance in providing continuity, communication, and coordinating care across settings
  • Assist families in creating clear plans for which clinical service or clinician to contact in case of specific symptoms, illness, or emergency, and when to contact hospice if applicable
  • Discuss what to expect during the dying process, including symptom management, and respond to the emotional needs of caregivers and family

Manage Pain and Symptoms

  • Anticipate and address the full spectrum of symptoms related to specific serious illnesses or conditions along the trajectory using developmentally-appropriate tools, including symptoms at end of life
  • 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
  • Provide multimodal pain or symptom treatment, along with child life, PT/OT, massage, and other ancillary services
  • Understand limitations of pain and symptom assessment tools in pediatric patients with cognitive impairment
  • Recognize symptom co-occurrence and prioritize management of multiple, co-occurring symptoms
  • Empower pediatric patients and families with symptom management plans that provide flexibility and autonomy to allow for changing needs
  • Understand and practice safe opioid and other controlled substance prescribing and deploy with clear processes to maintain patient and prescriber safety
  • Assess and reassess the benefits and burdens of polypharmacy, and deprescribe when appropriate

Prevent Crises and Plan Ahead

  • Identify barriers in the home/community environment to meeting pediatric patient and family needs and honoring their priorities, and discuss least restrictive alternatives
  • Assess for and develop a crisis intervention plan, including suicide prevention for all family members
  • Empower families with medication or technology/equipment titration plans that provide flexibility for illness management at home
  • Create emergency care plans, and contingencies for families’ needs at home that include information about who to contact for specific needs
  • Identify community resources that can support pediatric patients living with serious illness and/or complex needs, and their siblings and families
  • Assist with transitioning from inpatient to outpatient medication regimens, including medication reconciliation, route of delivery, deprescribing, and integrating pharmacists into the care
  • Review crisis plan as part of advance care planning discussions, ensure that proper documentation is in place and that families know whom to contact 24/7 in case of a crisis
  • Partner with IDT in identifying and engaging community resources that can support pediatric patients living with serious illness and/or complex needs, and their siblings and caregivers
Learning Pathways for Pediatric Clinicians

Complete these Learning Pathways to achieve the skills in CAPC's pediatric clinical training recommendations.

View Learning Pathways

Thank you to the following clinicians for their review of these recommendations: Kathie Kobler, PhD, APRN, PCNS-BC, CHPPN, FPCN; Katie Krawzak, DNP, APN, CPNP-AC; Meggan Mikal, DNP, CPNP-PC, CHPPN

Notes

  1. ↩ 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).
  2. ↩ 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."
  3. ↩ a Provision in the Affordable Care Act that allows children with life-threatening health problems who are enrolled in Medicaid to get both curative treatment that focuses on curing a health condition and hospice care.

Get the latest updates in your inbox!