APDA American Parkinson Disease Association
Information & Referral Center

Palliative and Hospice Care

Palliative and hospice care can provide services to assure the highest quality of life and best possible end-of-life care for your loved one. These resources can help you understand the difference between palliative and hospice care and how to choose the best hospice service for your family even though they are not all specific to Parkinson's disease.

Relevant Publications - Downloadable

“Choosing a Quality Hospice for You or Your Loved Ones”
Published by The National Hospice and Palliative Care Organization
Some questions developed to help you and your family identify important factors when selecting a hospice agency.


“Palliative and Hospice Care”
Published by the Parkinson’s Foundation
The information on this 2-page fact sheet will help you better understand the differences between hospice and palliative care.  By learning about and discussing available options before they are needed, families can make thoughtful decisions instead of feeling pressured or rushed during a stressful or crisis situation.


Relevant Online Information

“About Hospice Care”
Published by The National Hospice and Palliative Care Organization
Information to help understand what hospice is and how it works. This resource includes a video series geared towards understanding hospice care.

“Choosing a Hospice: 16 Questions to Ask”
Published by The American Hospice Foundation
Expert tips for questions to ask that will help you to choose the most appropriate hospice.

“End Stage Parkinson’s: What to Expect”
Published by Crossroads Hospice and Palliative Care
It can be a challenge for families to know when their loved one with Parkinson’s is eligible for hospice care, due to the progressive nature of the disease. This webpage provides information about the end stages of Parkinson’s, and eligibility criteria for hospice.

“Find a Hospice Agency”
Published by Medicare
Using this online resource, you can search and find Medicare-certified hospices in your area and compare their quality of care.

“Parkinson's Disease and Palliative Care”
Published by GetPalliativeCare.org
This page outlines the decline of Parkinson's disease and helps those coping with Parkinson's understand what a palliative care team provides. There is a brief discussion of when and how to get palliative care, an online quiz to determine if palliative care is right for your family and a link to a palliative care provider search tool.

“When is it Time to Call Hospice?”
Published by Agingcare.com
This article speaks to how important it is to understand when to engage hospice, and how one qualifies for services.


Relevant Online Lectures and Webinars

“Exploring End-of-Life Care Options”
By NIHSeniorHealth, July 9, 2014
This 4-minute video looks at options for care at the end-of-life, explains the difference between hospice and palliative care, and discusses where you can receive end-of-life care, organizations to help you access end-of-life care and ways to pay for end-of-life care.

“Parkinson's Progression Palliative and End of Life Issues”
By Parkinson's Canada, February 23, 2016
This 38-minute webinar provides an overview of Parkinson's symptoms, and treatment challenges due to disease progression. 18-minutes in the topic turns to planning a good death, the euphemisms even doctors use to avoid discussing death, the most common cause of death in those with PD, putting your end-of-life preferences in writing. Palliative care can help families face these end-of-life issues.

“What Is Palliative Care”
By GetPalliativeCare.org
This 2-minute uses the metaphore of a bridge to illustrate how palliative care provides support by shoring up your bridge when you face a serious illness. The text on the page above and below the video window defines palliative care, explains how a palliative care team can support your family and provides a link to an online quiz to determine if palliative care if right for your situation.


Expert-Level Resources

Palliative Care in Parkinson's Disease
Royal College of Physicians of London, Parkinson's Disease: National Clinical Guideline for Diagnosis and Management in Primary and Secondary Care, Chapter 11, 2006
In the absence of any curative treatment, the principles of palliative care should be applied throughout the course of the disease and not limited to the terminal end-of-life period. This chapter defines palliative care and discusses the palliative phase of Parkinson's disease, palliative carers, care homes, social costs, withdrawl of drugs, pressure ulsers, end-of-life issues, recommendations and ethical issues.


This list was compiled by Adrian Quintero and Denise Dagan with the Stanford APDA Information & Referral Center, August 2018.

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