Integrating palliative care into end-of-life care for children with cancer

ABSTRACT

Caring for high-risk pediatric oncology patients and their families requires attention to many significant palliative care, often end-of-life (EOL), issues that providers should be armed to address. Caring for these patients specifically at the EOL requires a broad, interdisciplinary approach to address the patients’ physical, psychosocial, spiritual/existential and emotional suffering. In addition, the team should be aware of ethical concerns that may arise. This review focuses on primary incorporation of core palliative care principles into the care of pediatric oncology patients at the EOL. To promote best practice within pediatric oncology, core pediatric palliative care (PPC) principles should be incorporated throughout the illness trajectory by oncologists. For high-risk patients, specialty trained palliative care consultants should work in conjunction with primary oncology providers to optimize the care these patients receive. This review of experts’ experience, recent data and anticipated evolution of the field is intended as a primer for Palliative Care and EOL Care for pediatric oncologists and other pediatric oncology providers delivering primary palliative care in hospital, community and home settings.

KEYWORDS:

• Palliative care
• pediatrics
• cancer
• concurrent care
• end-of-life
• bereavement
• advanced care planning
• quality of life

Acknowledgements

The authors would like to acknowledge the expert assistance of the St Jude Children’s Research Hospital scientific editors who not only helped us to edit but accommodated our short turnaround request.

Declaration of interest

The authors have no relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript. This includes employment, consultancies, honoraria, stock ownership or options, expert testimony, grants or patents received or pending, or royalties.

EOL Checklist

Advanced Care Planning

☐ Have clear discussions about prognosis

☐ Goal-directed treatment options

☐ Cancer-directed therapy

☐ Antibiotics/Transfusions

☐ Medically provided Hydration/Nutrition

☐ Artificial life-prolonging interventions

☐ Consideration of Family Care Conference

☐ Prognosis discussions with extended family members if requested

☐ POLST/POST form signed with copies distributed to medical providers and family

☐ Order on chart or in Computer Order Entry if inpatient

☐ Advanced Care Plan/Five Wishes documents filled out

☐ Preferred place of death discussed and documented

Ethical Considerations

☐ Review case with Ethics Committee as needed

☐ Documentation of conversations regarding potentially inappropriate treatments

☐ Discussion of plans for withdrawal of artificial life-prolonging interventions

☐ With staff

☐ With family

Coordination of Care

☐ Medical providers updated on EOL care transition

☐ Primary Care Provider__________________________

☐ Subspecialty Consultants_______________________

☐ Primary Nurse___________________________________

 ☐ Primary Social Worker__________________________

☐ Chaplains:

 ☐ Home Church_________________

 ☐ Hospital

☐ Child Life_________________________________________

 ☐ Hospice Team___________________________________

 ☐ Other (discipline)_______________________________

Symptom Assessment and Management

☐ Symptom-related needs assessment documented

☐ Physical symptoms addressed

☐ Psychological symptoms addressed

 ☐ Consultants notified as needed (Pain/Anesthesia/Palliative Care/Radiation Oncology)

☐ Discussion with family about signs/symptoms signifying imminent death

Spiritual, Psychosocial and Emotional Needs

☐ Needs assessment documented

☐ Patient ☐ Family ☐ Sibling(s)

☐ Needs assessed systematically

☐ Emotional ☐ Social ☐ Spiritual ☐ Cultural ☐ Existential

☐ Consideration of Expedited Make-A-Wish Trip

☐ Facilitation of distant family members gathering

☐ Funeral Home Identified____________________________________

☐ Funeral Arrangements

☐ Burial ☐ Cremation

Legacy Building

☐ Hand prints

☐ Hand/Foot molds

☐ Scrapbook of photos

☐ Sibling support activities

☐ Life story

☐ Video recordings

☐ Other__________________

Grief and Bereavement Care

☐ Assessment of needs for family members

☐ Risk of complicated grief

☐ Creation of proactive bereavement care plan

☐ Bereavement materials provided

☐ Facilitation for staff expressions of grief

☐ Sympathy cards circulated

☐ Debriefing scheduled