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POGO Satellite Manual

5.2 Communication

5.3 Settings of Care

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Most children with advanced cancer and their families prefer to be at home if at all possible, but understand the need for outpatient visits and hospitalizations when necessary. However, as the child’s disease and care needs progress, alternate settings of care such as hospital or hospice may be preferred. Any setting can be adapted to the individual child and family’s situation.

Consider consultation with a pediatric palliative care team when caregivers are familiar with caring for children but unfamiliar with provision of care to the dying, or where there is familiarity with provision of care for the dying but not for children or adolescents. The pediatric palliative care team can add experience in symptom management, communication and ethical issues which arise at end of life.

Home

As end of life approaches, the local team will need to ensure re-evaluation of the physical set-up of the home to accommodate the changing care needs of the child and to seek supports to meet these needs (i.e., palliative nursing, personal support workers, physiotherapy, occupational therapy, social work, POGO Interlink Nurse). Regular contact with care providers in person, by phone or using technology will be necessary to ensure the family continues to feel supported. Clinician home visits and 24/7 access to telephone advice is often necessary for optimal comfort and symptom management.

Hospice

In some areas, care in a hospice setting may be available and allow increased supports to the family in a more home-like setting than a hospital. Discussion with a local hospice to discuss types of care available should include family members. Specialized pediatric hospices are available in some areas, and some children and families may already be familiar with their services.

Hospital

Families whose children continue on intensive therapy or with need for frequent transfusions and/or infusions may choose to remain in hospital. Sometimes less intensive chemotherapy allows outpatient-based care which may be facilitated at home or at a hospital closer to home. However, some families just prefer the additional support and reassurance that comes with the hospital setting for their child’s end-of-life care.

Primary author Dr. Christina Vandeboncoeur, Children’s Hospital of Eastern Ontario, Ottawa. This guidance document was developed based on the references in Sub-Section 5.8 References. Reviewed by the POGO Satellite Manual Palliative Care Working Group, 2016.

Disclaimer: Source Accuracy

You are welcome to download and save a local copy of this document in the Word and/or PDF formats provided. As the POGO Satellite Manual is subject to ongoing revisions and updates by POGO, we recommend you regularly check the online version posted at https://www.pogo.ca/satellite-manual/ to ensure you have the most up-to-date content. In the event of any inconsistency between the content of a local copy and the online version of the POGO Satellite Manual, the content of the online version shall be considered correct. Please see also the POGO Satellite Manual Disclaimer.

Record of Updates
Version NumberDate of EffectSummary of Revisions
18/24/2021Original version posted.
5.4 Symptom Management
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In this Section

  • 1.1 History and Overview
  • 1.2 Acknowledgements
  • 1.3 Committees and Working Groups
  • 1.4 POGO Satellite Manual Disclaimer
  • 2.1 Principles of POGO Satellite Clinic Care
  • 2.2 Eligible Patients
    • 2.2.1 Children Eligible for Chemotherapy Administration in a POGO Satellite Clinic
    • 2.2.2 Children Eligible for the Management of Complications in a POGO Satellite Clinic
    • 2.2.3 Children Eligible for Supportive Care in a POGO Satellite Clinic
  • 2.3 Scope of POGO Satellite Clinic Practice
  • 2.4 Expanded POGO Satellite Clinic Practice
  • 3.1 Safe Handling, Administration and Disposal of Chemotherapy Agents
    • 3.1.1 Personal Protective Equipment
    • 3.1.2 Preparation, Transport and Storage
    • 3.1.3 Administration of IV Hazardous Drugs
    • 3.1.4 Administration of Oral Hazardous Drugs
    • 3.1.5 Disposal of Equipment/Personal Protective Equipment used to Administer Hazardous Drugs
    • 3.1.6 Safe Handling for Pharmacy
    • 3.1.7 References
  • 3.2 Accidental Exposure/Spills
  • 3.3 Extravasation Management
    • 3.3.1 Prevention and Management of Extravasations
    • 3.3.2 Antidotes and Treatments for Extravasation
    • 3.3.3 Sample Extravasation Documenting Tool
    • 3.3.4 References
  • 3.4 Injecting SC Medication Via an Insuflon
  • 3.5 Chemotherapy Administration Reference List
  • 3.6 Central Venous Catheter Care
  • 3.7 Chemotherapy Quick Reference
    • 3.7.1 Rapid Hydration
    • 3.7.2 Provider Guide: Prevention and Management of Irinotecan-Induced Diarrhea
    • 3.7.3 Capizzi Methotrexate
    • 3.7.4 Erwinia Asparaginase
  • 4.1 Management of Fever and Neutropenia
    • 4.1.1 Routine Order Sample Sheet
    • 4.1.2 Sample Fever Cards
    • 4.1.3 Criteria for low-risk designation. Risk categorization refers to risk of bacteremia and serious complications, including mortality.
  • 4.2 Pentamidine Administration
    • 4.2.1 Inhaled Pentamidine
    • 4.2.2 Intravenous Pentamidine
  • 4.3 Antiemetics
  • 4.4 Treatment of Varicella-Zoster Infections
  • 4.5 Immunization of Children with Cancer
  • 4.6 Transfusion
  • 4.7 Clinical Circumstances that Warrant Consultation with the Specialized Childhood Cancer Program
  • 5.1 Palliative Care Overview
  • 5.2 Communication
  • 5.3 Settings of Care
  • 5.4 Symptom Management
  • 5.5 End of Life
  • 5.6 When a Child Dies at the POGO Satellite Clinic
  • 5.7 Appendix: Sample Bereavement Materials
    • 5.7.1 Reconciling Your Grief
    • 5.7.2 Funeral Arrangement Checklist
    • 5.7.3 Helping Children Who Grieve
    • 5.7.4 Coping with the Holidays
    • 5.7.5 The Grief Experience
  • 5.8 References
  • 6.1 Goals and Objectives
  • 6.2 Participant Site Selection
    • 6.2.1 Tertiary Hospital Site Selection
    • 6.2.2 Community Hospital Site Selection
  • 6.3 POGO’s Roles
    • 6.3.1 PHIPA, Privacy and Research
  • 6.4 Funding
    • 6.4.1 Funding Support for Tertiary Hospital Activity
    • 6.4.2 Funding Support for Community Hospital Activity
  • 6.5 Infrastructure and Formal Requirements
    • 6.5.1 Specialized Childhood Cancer Program Partners’ Role in the POGO Satellite Program
    • 6.5.2 POGO Satellite Clinic Partners’ Role in the POGO Satellite Program
  • 7.1 Preamble
  • 7.2 Investigator Responsibilities
  • 7.3 Training Requirements
    • 7.3.1 General Training for Conduct of Research
    • 7.3.2 Protocol-Specific Training
  • 7.4 Research Activities That May Be Completed in POGO Satellite Clinics Under Supervision of DSI
  • 7.5 Research Activities to be Completed in Specialized Childhood Cancer Programs Only
  • 7.6 Recognition and Reporting of Adverse Events (AEs)
  • 7.7 Data Transfer
  • 7.8 Pharmacy Drug Accountability
  • 7.9 Site Inspections and Quality Assurance
  • 8.1 Pediatric Oncology Shared Care Initial Data Transfer Sheet
  • 9.1 POGO Satellite Clinic Preparedness Checklist
  • 9.2 POGO Satellite Clinic Quality Assurance Checklist
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