Palliative & Supportive Care Resources

For All Palliative Care Pillars

• Patient Screening Form: https://parkinson.egnyte.com/dl/QCMzheUz7x
  • Password: MCpaLY9f
• Clinician Template Checklist
  • Password: N2oRZY9U

Assessment and Management of Non-Motor Symptoms

• Non-Motor Symptoms Overview
• Non-Motor Medications
• Assessment Tools:
  • Edmonton Symptom Assessment System (ESAS)
  • Brief Pain Inventory (BPI)
• Pain:
  • Fact Sheet
  • Article
  • Blog
• Fatigue:
  • Clinician Guide: https://parkinson.egnyte.com/dl/1a2SL4fYFp
    • Password: 3FB4TgtF
  • Webpage
  • Fact Sheet

Support of Patients’ Emotional and Spiritual Needs and Grief

• Assessment Tools:
  • Hope Index: https://parkinson.egnyte.com/dl/wJclcLpLwB
    • Password: s3opHAFg
  • Tips for Supporting Spiritual Needs: https://parkinson.egnyte.com/dl/jCe79G3F5z
    • Password: NbazQr33
  • Spirituality in Serious Illness and Health
  • https://www.liebertpub.com/doi/10.1089/jpm.2021.0522

Support for Care Partners

• Assessment Tools:
  • Zarit Burden of Care (ZBI)
  • The Modified Caregiver Strain Index (MCSI)
  • Caring and Coping Worksheets
  • Care Partner Screening Form: https://parkinson.egnyte.com/dl/Cvi8diVhOq
    • Password: zjzBn2Jq

Advance Care Planning

• Discussing Advance Care Planning: https://parkinson.egnyte.com/dl/axtI1ZGbWb
  • Password: AjEhC2Sf
• Optimizing Future Planning in Parkinson Disease: Suggestions for a Comprehensive Roadmap from Patients and Care Partners
• Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives
• Prepare For Your Care
• The Conversation Project

Referrals to Specialist Palliative Care and Hospice When Appropriate

• Assessment Tools:
  • Brief Needs Assessment Tool (BNAT): https://parkinson.egnyte.com/dl/wuYYRtYa3f
    • Password: p6RgEdvD
• Values Discussion Checklist: https://parkinson.egnyte.com/dl/11quPC1hVZ
  • Password: yVTHr2UF
• Neuropalliative Care: A Guide to Improving the Lives of Patients and Families Affected by Neurologic Disease
• Case Studies in Neuropalliative Care
• The Rest of the Iceberg
• Palliative Care for Parkinson’s Disease: Suggestions from a Council of Patient and Care Partners
• Defining Palliative Care Needs in Parkinson's Disease
• Comparison of Integrated Outpatient Palliative Care with Standard Care in Patients with Parkinson Disease and Related Disorders: A Randomized Clinical Trial
• Implementation Issues Relevant to Outpatient Neurology Palliative Care
• Factsheet
• Podcast

Additional Resources

• The Checklist Manifesto: How to Get Things Right
• Advanced Communication Training (ACT) Course
• EPEC (Education in Palliative and End of Life Care)
• International Neuropalliative Care Society (INPCS)
• Dropping the Bomb: The Experience of Being Diagnosed with Parkinson's Disease
• SPIKES-A Six-Step Protocol for Delivering Bad News
• MVP–Medical Situation, Values, and Plan: A Memorable and Useful Model for All Serious Illness Conversations
• VitalTalk