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 #  Palliative & Supportive Care Resources 

 

   

 ## For All Palliative Care Pillars

- Patient Screening Form: <https://parkinson.egnyte.com/dl/QCMzheUz7x>
    - Password: MCpaLY9f
- [Clinician Template Checklist](https://parkinson.egnyte.com/dl/gpPoQxgEQj)
    - Password: N2oRZY9U

## Assessment and Management of Non-Motor Symptoms

- [Non-Motor Symptoms Overview](/understanding-parkinsons/non-movement-symptoms "Non-Movement Symptoms")
- [Non-Motor Medications](/library/fact-sheets/medications-nonmotor-symptoms "Medications for Non-motor Symptoms")
- **Assessment Tools:**
    - [Edmonton Symptom Assessment System (ESAS)](http://www.npcrc.org/files/news/edmonton_symptom_assessment_scale.pdf)
    - [Brief Pain Inventory (BPI)](https://www.mdanderson.org/research/departments-labs-institutes/departments-divisions/symptom-research/symptom-assessment-tools/brief-pain-inventory.html)
- **Pain:**
    - [Fact Sheet](/library/fact-sheets/pain "Pain in Parkinson's Disease")
    - [Article](https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.23959)
    - [Blog](/blog/tips/pain-mindfulness "A Beginner's Guide to Managing Pain Through Mindfulness")
- **Fatigue:**
    - Clinician Guide: <https://parkinson.egnyte.com/dl/1a2SL4fYFp>
        - Password: 3FB4TgtF
    - [Webpage](/understanding-parkinsons/non-movement-symptoms/fatigue "Fatigue")
    - [Fact Sheet](/library/fact-sheets/fatigue "Fatigue")

## 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://jamanetwork.com/journals/jama/article-abstract/2794049)
    - <https://www.liebertpub.com/doi/10.1089/jpm.2021.0522>

## Support for Care Partners

- **Assessment Tools:**
    - [Zarit Burden of Care (ZBI)](https://eprovide.mapi-trust.org/instruments/zarit-burden-interview)
    - [The Modified Caregiver Strain Index (MCSI)](https://www.sralab.org/sites/default/files/2017-07/issue-14.pdf)
    - [Caring and Coping Worksheets](/library/fact-sheets/care-partner-worksheets "Care Partner 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](https://doi.org/10.21037/apm.2019.09.10)
- [Framing Advance Care Planning in Parkinson Disease: Patient and Care Partner Perspectives](https://doi.org/10.1212/WNL.0000000000007552)
- [Prepare For Your Care](https://prepareforyourcare.org/welcome)
- [The Conversation Project](https://theconversationproject.org/)

## 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](https://link.springer.com/book/10.1007/978-3-319-93215-6)
- [Case Studies in Neuropalliative Care](https://www.cambridge.org/core/books/case-studies-in-neuropalliative-care/FED778863DA10C5179A2ED47739A7A36)
- [The Rest of the Iceberg](https://doi.org/10.1212/WNL.0000000000004682)
- [Palliative Care for Parkinson’s Disease: Suggestions from a Council of Patient and Care Partners](https://doi.org/10.1038/s41531-017-0016-2)
- [Defining Palliative Care Needs in Parkinson's Disease](https://doi.org/10.1002/mdc3.12702)
- [Comparison of Integrated Outpatient Palliative Care with Standard Care in Patients with Parkinson Disease and Related Disorders: A Randomized Clinical Trial](https://doi.org/10.1001/jamaneurol.2019.4992)
- [Implementation Issues Relevant to Outpatient Neurology Palliative Care](https://doi.org/10.21037/apm.2017.10.06)
- [Factsheet](/library/fact-sheets/hospice "Understanding Hospice Care in Parkinson’s")
- [Podcast](/library/podcast/104 "Episode 104: Hospice Care and the Myths Surrounding It")

## Additional Resources

- [The Checklist Manifesto: How to Get Things Right](https://www.amazon.com/Checklist-Manifesto-How-Things-Right/dp/0312430000)
- [Advanced Communication Training (ACT) Course](https://act-ur.com/)
- [EPEC (Education in Palliative and End of Life Care)](https://www.bioethics.northwestern.edu/programs/epec/)
- [International Neuropalliative Care Society (INPCS)](https://www.inpcs.org/i4a/pages/index.cfm?pageid=1)
- [Dropping the Bomb: The Experience of Being Diagnosed with Parkinson's Disease](https://doi.org/10.1016/j.gerinurse.2006.10.012)
- [SPIKES-A Six-Step Protocol for Delivering Bad News](https://doi.org/10.1634/theoncologist.5-4-302)
- [MVP–Medical Situation, Values, and Plan: A Memorable and Useful Model for All Serious Illness Conversations](https://doi.org/10.1016/j.jpainsymman.2020.07.022)
- [VitalTalk](https://www.vitaltalk.org/)

 

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