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Satellite Manual

5.0 Palliative Care

5.1 Palliative Care Overview

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 – Figure 1
Satellite Manual_5.1_Model of Palliative Care_4Aug2016

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, 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 duel 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, an important paper showed that 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 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
  2. CAPC, Public Opinion Research on Palliative Care, 2011
  3. EPEC (education in palliative and end-of-life care) – Pediatrics. 2014
  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. http://www.nhpco.org/palliative-care-0 
  7. Liben, S., Papadatou, D., & 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 of Section 5.0 Palliative Care 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.

5.2 Communication
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In this Section

  • 1.1 History & Overview
  • 1.2 Acknowledgements
  • 1.3 Committees and Working Groups
  • 1.4 Satellite Manual Disclaimer
  • 2.1 Principles of Satellite Care
  • 2.2 Eligible Patients
    • 2.2.1 Children Eligible for Chemotherapy Administration in a Satellite Centre
    • 2.2.2 Children Not Eligible for Chemotherapy Administration in a Satellite Centre
    • 2.2.3 Children Eligible for the Management of Complications on a Satellite Centre
    • 2.2.4 Eligibility of Children Requiring Supportive Care
  • 2.3 Scope of Satellite Practice
    • 2.3.1 Implementation of Psychosocial Treatment Plan (Process for Communication)
    • 2.3.2 Limitations on Satellite Practice
  • 2.4 Advanced Satellite Practice
  • 3.1 Safe Handling, Administration and Disposal of Chemotherapy Agents
  • 3.2 Accidental Exposure/Spills
  • 3.3 Extravasation Management
    • 3.3.1 Sample Extravasation Documenting Tool
  • 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 Document
    • 3.7.2 Provider Guide: Prevention and Management or Irinotecan induced Diarrhea
    • 3.7.3 Parent Handout: Prevention and Management of Irinotean induced diarrhea
    • 3.7.4 Capizzi Methotrexate
    • 3.7.5 Erwinia L-Asparaginase
  • 4.1 Management of Fever and Neutropenia
    • 4.1.1 Routine Order Sample Sheet
    • 4.1.2 Fever Cards (Sample)
    • 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 TPN Document
  • 4.6 Immunization of Children with Cancer
  • 4.7 Transfusion
  • 4.8 When to consult the Tertiary Centre
  • 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 in the Satellite Centre
    • 5.6.1 Reconciling your grief
    • 5.6.2 Funeral arrangement checklist
    • 5.6.3 Helping Children who grieve
    • 5.6.4 Coping with the Holidays
    • 5.6.5 The grieve experience
  • 6.1 Goals and Objectives
  • 6.2 Participant Site Selection
    • 6.2.1 Tertiary Site Selection
    • 6.2.2 Community Site Selection
  • 6.3 POGO’s Roles
    • 6.3.1 PHIPA, Privacy and Research
  • 6.4 Funding
    • 6.4.1 Funding Support for Tertiary Activity
    • 6.4.2 Financial Support for Pediatric Oncology Community Activity
  • 6.5 Infrastructure and Formal Requirements
    • 6.5.1 Tertiary Partners’ Role in Provincial Pediatric Oncology Satellite Program
    • 6.5.2 Satellite Partners’ Role in Provincial Pediatric Oncology 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 Activites that may be completed in satellite centres under supervision of DSI
  • 7.5 Research Activities to be completed in Tertiary Centres Only
  • 7.6 Recognition and Reporting of Adverse Events (AEs)
  • 7.7 Data Transfer
  • 7.8 Pharmacy Drug Accountibility
  • 7.9 Site Inspections and Quality Assurance
  • 8.1 Pediatric Oncology Shared Care Initial Data Transfer Sheet
  • 8.2 Shuttle Sheet
  • 8.3 Psychosocial Communication Tool
  • 9.1 Satellite Readiness/ Preparedness Checklist
  • 9.2 Education Report for Tertiary Centres
  • 9.3 Education Report for Satellite Centres
  • 9.4 Vital Signs Report
  • 9.5 Self- Assessment
  • 9.6 Satellite Contact Form
  • 9.7 Annual Satellite Caseload Report
  • 9.8 POGO Provincial Satellite Program Annual Accounting Report
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