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POGO Satellite Manual

5.1 Palliative Care Overview

5.2 Communication

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Communicating honestly with a seriously ill child and their family about prognosis and expected disease trajectory is central to excellence in palliative and end-of-life care. Honest prognostic discussions, as difficult as they are, allow the child and family to anticipate what they will likely experience and empowers them to make effective decisions about their ongoing care. Engaging in these discussions also enables the clinician to explore the family’s goals, needs, hopes and fears.

No parent enjoys talking about the possibility/likelihood that there is no further curative treatment available for their child; however, research has taught us that parents want to have these honest discussions with their clinicians.1 At times, non-verbal communication is more important than verbal communication. Silence and being present, accessible and approachable are all very important skills for effective communication in pediatric palliative care.

Advance Care Planning

Advance Care Planning (ACP) is necessary for any child with advanced cancer. It requires effective communication to clarify the goals of care and establish agreement on appropriate interventions for the child as prognosis changes. Ideally, ACP discussions should happen early and in a non-urgent fashion to help parents digest complex end-of-life decision-making. ACP should be implemented even though it is difficult to exactly predict the timing of death.

Important topics to review in ACP include:

  1. Seriousness of illness and disease progression
  2. Expected course, treatment options and risk/benefits to each
    1. Treatment options may include palliative chemotherapy, palliative radiation, antibiotics, blood replacement products
    2. How long to continue on, and when to limit certain aspects of, the treatment plan
    3. Will treatment prolong life but at a cost of suffering? Will treatment prolong life and improve quality of life?
    4. Benefits and impact of artificial nutrition and hydration at end of life
    5. Reassurance that the child will be offered fluids and foods by mouth for comfort providing ability
  3. Focus on minimizing distress and easing suffering
    1. Review of pain medications and adjuvants
  4. Family-centered care and the focus on siblings
  5. Resuscitation
  6. What does death look like (please refer to Sub-Section 5.5 End of Life)

Resuscitation

Resuscitation status is a small but integral part of ACP. Discussions about resuscitation should be incorporated into the larger issue of goals of care, as the benefits of cardiopulmonary resuscitation (CPR) when goals become focused on optimizing comfort are dubious. Parents typically obtain their information about resuscitation from the media. Some parents have expressed worry that “Do Not Resuscitate” (DNR) means “Do Not Treat”; they may have the misperception that if a DNR is in place, their child will not have access to pain and symptom management and other aspects of supportive care, leading to increased suffering.

Important considerations when communicating about resuscitation include:

  1. Ensure you lead discussions about resuscitation with open-ended questions versus asking parents if they want a DNR. Open-ended questions allow for a deeper and meaningful understanding of what a DNR is and is not. It is important to remember that every parent would do anything and everything to save their child.
  2. CPR will not save the child dying from cancer.
  3. Parents need to understand the futility of attempting resuscitation in a child dying of a malignant disease. They require support and guidance from the medical team to appreciate the pain and suffering (both for the child and family) that often come with resuscitation attempts in a child with advanced cancer and the parental distress of actively withdrawing life-sustaining treatment.
  4. It is crucial to emphasize to parents what WILL be provided (oxygen, medications to keep their child comfortable and ongoing care and support), not just discuss what we will NOT do.

References

  1. Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J. Clin. Oncol. Nov 20 2006;24(33):5265-5270.

Primary authors Ms. Lisa Pearlman, Children’s Hospital, London Health Sciences Centre, London and Ms. Vicky Wilton, Northeast Cancer Centre, Health Sciences North, Sudbury. 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.
5.3 Settings of Care
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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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