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POGO Satellite Manual

5.0 Palliative Care

5.1 Palliative Care Overview

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What is Palliative Care?

Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, preventing and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social and spiritual needs to facilitate patient autonomy, access to information and choice.

Model of palliative care showing integration of palliative care into all phases of treatment, which may include end-of-life care and bereavement care.
Figure 1: Model of Palliative Care

Palliative care services are available concurrently with, or independent of, curative or life-prolonging care (see Figure 1). Patient and family hopes for peace and dignity are supported throughout the course of illness, during the dying process and after death. This necessitates that the primary team continue to be involved, rather than be replaced.

Palliative care cannot be done in isolation; this form of care is best provided by an interdisciplinary team. Also, patients, families and palliative and non-palliative health care providers must collaborate and communicate about care needs throughout the course of disease and beyond (i.e., into bereavement).

Benefits of Integrating Palliative Care Early

Effective integration can happen at many time points including: at initial diagnosis; when treatment strategies change; or when the primary team, family or patient needs further support.

Some of the benefits to early integration of palliative care include:

  • Offering patients and families more autonomy when actualizing their roles in decision-making
  • Providing the primary team with new team perspectives
  • Enabling families to hold dual goals of care by providing support during curative intent therapy
  • Preventing a disruptive transition to a new care team during more difficult times
  • Allowing the full scope of support to be available for families. (When palliative care occurs late in the trajectory, it is difficult for palliative care teams to meet families, establish rapport and employ all of the resources at their disposal to enhance quality of life for families.)

Common Myths about Palliative Care

Myth #1: Child must be terminally ill or at the end of life

Palliative care, both as a philosophy and subspecialty, is recommended at any point in the patient’s journey as an extra layer of support.

Myth #2: Palliative care = giving up hope

Not only is palliative care not the same as hospice (or end-of-life) care, it also is not associated with the loss of hope. For example, disclosure of a poor prognosis by a physician can actually support hope.

Myth #3: Child must have a DNR to have palliative care

While a Do-Not-Resuscitate (DNR) order is often in line with the goals of care of families when faced with a terminal disease, this is not always the case. In fact, resuscitation should be treated like any other intervention with regards to its benefits and burdens.

Myth #4: Must abandon all disease-directed treatment

Good palliative care often includes disease-directed therapies (e.g., chemotherapy, radiation, or even surgery). These forms of treatment are not only useful for maximizing quantity of life, but they also have a role in maximizing quality as well.

Myth #5: Administering opioids causes respiratory depression and quickens death

When titrated appropriately, the risk of opioid-related toxicity causing significant respiratory depression and hastening death is negligible. If toxicity does occur, there will be a number of sequential warning signs such as drowsiness, confusion and loss of consciousness prior to any significant respiratory compromise.

References

  1. Balfour Mount. 1973: https://www.mcgill.ca/palliativecare/portraits-0/balfour-mount.
  2. Center to Advance Palliative Care (CAPC), Public Opinion Research on Palliative Care, 2011.
  3. Friedrichsdorf, Stefan, Foster, Laurie, Hauser, Joshua, Remke, Stacy, Roman, Elisa and Wolfe, Joanne. (2014). Education in Palliative and End-of-Life Care for Pediatrics (EPEC-Pediatrics). Journal of palliative care. 30. 226-226.
  4. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. 2011; 127(6):1094-1101.
  5. Friedrichsdorf SJ. Pain management in children with advanced cancer and during end-of-life care. Pediatr Hematol Oncol. 2010;27(4):257-261.
  6. National Hospice and Palliative Care Organization (NHPCO). https://www.nhpco.org/.
  7. Liben S, Papadatou D, and Wolfe J. (2008). Paediatric palliative care: Challenges and emerging ideas. 371(9615), 852-864. doi:10.1016/S0140-6736(07)61203-3.
  8. Mack JW, Wolfe J, Cook EF, Grier H, Cleary PD, Weeks JC. Hope and Prognostic Disclosure. Journal of Clinical Oncology. 25:5636-5642. 2007.
  9. Mattie Stepanek 1990-2004.
  10. Pastrana et al, A matter of definition – key elements identified in a discourse analysis of palliative care, Palliative Medicine 2008; 22: 222–232.
  11. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ. Early palliative care for patients with metastatic non-small-cell lung cancer. NEJM. 2010; 363(8):733-742.
  12. Thorns A, Sykes N. Opioid use in last week of life and implications for end-of-life decision-making. Lancet. 2000;356(9227):398-399.
  13. Wolfe J, Hinds PS, Sourkes BM, eds. Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia, PA: Elsevier; 2011.

Editors-in-chief include Dr. Adam Rapaport, The Hospital for Sick Children, Toronto and Dr. Alisha Kassam, Southlake Regional Cancer Centre, Newmarket. Primary author Dr. Kevin Weingarten, The Hospital for Sick Children, Toronto. 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
110/5/2021Original version posted.
5.2 Communication
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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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