Planning Ahead for Parkinson’s Care

Age Page: Getting Your Affairs In Order

Published by National Institute on Aging

A four-page printable article uses a story format to understand when and why having all your important papers up to date and where your family can find them.  It itemizes what 'important papers' are and lists several organizations that can help, either directly or by helping you find a trustworthy lawyer.  This information is expanded with links to more information and question & answers on this webpage.

Five Wishes

Published by Aging with Dignity

An easy-to-use legal advance directive document written in everyday language that is valid in most states as published and available for as little as $5.  Five Wishes helps all adults consider and document how they want to be cared for at the end of life, considering medical, personal, emotional and spiritual aspects.  It also helps to guide and structure discussions with family and physicians, making conversations easier.

Free Advance Directive Forms

Published by AARP

Select your state to find free, printable, advance directive forms for each state. You’ll find instructions on how to fill out the forms at each link.

Looking Ahead with Parkinson's

Published by The Michael J. Fox Foundation, January 5, 2021

Movement disorder experts, people living with Parkinson’s, and care partners offer food for thought in determining what's important to you when preparing your advance healthcare directive in this step-by-step guide, with further online resources to help you complete your directive, plan for your financial future, and contribute to Parkinson's research.

My End-of-Life Decisions: An Advance Planning Guide and Toolkit

Published by Compassion & Choices, July 1, 2020

This 36-page booklet helps you think about what matters most to you and who to choose for your as your healthcare proxy.  It guides you through talking with healthcare providers and your family, and finally through putting your wishes into a document that your family and medical institutions will abide by.

Toolkit for Health Care Advance Planning

Published by American Bar Association, 2020

Good advance planning for health care decisions is, in reality, a continuing conversation—about values, priorities, the meaning of one’s life, and quality of life. To help you in this process, this tool kit contains a variety of self-help worksheets, suggestions, and resources. There are eight tools in this 20-page booklet. The tool kit does not create a formal advance directive for you. Instead, it helps you do the much harder job of discovering, clarifying, and communicating what is important to you in the face of serious illness. 

Tools for Planning

Published by End of Life Washington

While the advance directive document available from End of Life Washington is specific to Washington state, this website has downloadable values worksheet and healthcare decisions IQ test to help anyone, anywhere, make end-of-life choices, pages that explain specific end-of-life options and downloadable pages with general information about advance directives and the process for completing them.

Advance Care Planning

Published by The Conversation Project

The numerous links on this page explore a variety of resources to help make, discuss and document future healthcare wishes and decisions for your self and your loved ones.

Advance Care Planning Tools and Resources List

Published by Coalition for Compassionate Care of California

Numerous links to conversation tools, advance directive forms, advance directive FAQs and instructions, and information about POLST, healthcare agents, decision-making capacity, CA healthcare decision law fact sheet, medicare reimbursement for advance care planning, and more!  Some of the resources on this page are in Spanish.

Advance Directives

Published by the National Hospice and Palliative Care Organization

Links to nine informative pages that explain advance directives, choosing your healthcare agent, downloading your state's advance directive, preparing and storing your advance directive, and digital advance directive services.

Advance Directives and Parkinson's

Published by Davis Phinney Foundation

This short webpage explains what an advance directive is, provides a values worksheet to help you think through what's important to you at the end-of-life, and lists six simple steps to walk you through the process of creating and sharing your advance directive - no lawyer necessary.

Don't Let Fear Stop You From End-of-Life Planning

Published by Forbes, January 29, 2017

This short article discusses the many reasons we don't discuss, prepare for, or share our end-of-life preferences.  It provides links to resources that can help overcome those obstacles.

End-of-Life Planning

Published by Our Life Celebrations

This blog post covers a lot of ground, including why you want an end-of-life plan, some tools to help you think it through, how to start the conversation with your doctor and family, what documents you need to complete, where to keep those documents so they can be found, and making funeral arrangements.

Prepare For Your Care

Published by The Regents of the University of California

Prepare is a step-by-step program to help you have a voice in your medical care, talk with your doctors, and fill out an advance directive form to put your wishes in writing.  

Stanford Letter Project

Published by Stanford Medicine

Free letter templates specifically designed to help you voice the key information needed to help you write to your doctor, your friends, and your family about what matters most to you at life's end.  Without making your wishes known, family members will struggle to guess what you would want, and ineffective medical procedures may be done causing you to suffer and costing your estate.  Use your letters to complete an advance directive in minutes.

What is Estate Planning?

By Retire Guide, October 26, 2020

This easy to read article explains why one should make an estate plan, the elements that should be included in a good estate plan, and some mistakes to avoid.

Take Charge! Tips for Advance Care Planning

By Family Caregiver Alliance, February 24, 2021

In this one-hour talk, author Mary Matthiesen shared why it's important to complete an advance healthcare directive, the four steps involved, the legal parts of an advance directive, and how to complete a Physician Order for Life Sustaining Treatment (POLST) if you have a critical health issue.

Let's Talk About Dying

By TED

In this TED Talk Peter Saul, an emergency doctor, asks us to think about the end of our lives, and to question the modern model of slow, intubated death in hospital. He shares two big questions can help you start this tough conversation with your family.

End-Of-Life Planning Is A 'Lifetime Gift' To Your Loved Ones

By National Public Radio, June 30, 2020

This 21-minute episode of the Life Kit podcast discusses the costs and benefits of planning for the end of life.  Included are six tips to get you started and ensure you include everything that's important to you.

Caregiving at End-of-Life

By UT Health San Antonio School of Nursing, September 13, 2021

As your loved one enters their end of life their needs change, impacting the demands you will face as their caregiver.  This hour-long webinar by Debbie James, MSN, RN, discusses how best to care for yourself and you loved one as you enter this stage of caregiving.  She explains the difference between palliative and hospice care, dispells myths about pain management, how to prepare for a 'good death', and what to expect at end of life.

Being Mortal

By Atul Gawande, October 7, 2014

In Being Mortal Gawande, a practicing surgeon, shares eye-opening research and rich storytelling about his own familiy and patients.  He asserts that medicine done properly can comfort and enhance our experience even to the end, providing not only a good life but also a good end.

Defining Hope

By Carolyn Jones, November 2017

Documentary Defining Hope, by Carolyn Jones, is a story about people weighing what matters most at the most fragile junctures in life, and the nurses who guide them. It follows patients with life-threatening illness as they make choices about how they want to live, how much medical technology they can accept, what they hope for and how that hope evolves when life is threatened. It is optimistic and reminds us that we have choices in how we die.

Rent for $3.99 on Amazon or iTunes.

The Go Wish Game

By Coda Alliance

Go Wish cards help you find words to talk about what is important if you were to be living a life that may be shortened by serious illness.  Sorting the cards alone can help you determine your priorities before completing an advance directive.  Playing the game with relatives or best friends can help you learn how you can best comfort your loved ones when they need you most. 

Palliative and Hospice Care

Published by Parkinson’s Foundation

The information on this two-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.

Palliative Care Roadmap

Published by Washington State Department of Health, July 2020

Serious conditions often cause difficult symptoms, challenging treatments, and caregiver stress. Fragmented care and frequent transitions between care settings, unmet needs, and increased responsibilities put stress and burden on patients, family members, and other caregivers. This 40-page booklet seeks to help you understand palliative care and how it can make your care more predictable and manageable.

Does Medicare Cover Hospice?

Published by RetireGuide, February 24, 2021

This easy to read article explains how Medicare pays for hospice care, what services hospice provides under Medicare rules, the very small out-of-pocket expenses you may experience, rules for enrolling with a hospice provider, and a link to the Medicare.gov, "Find a Hospice Agency" page.

Find and Compare Hospice Providers

Published by Medicare

Using this online resource, you can search and find Medicare-certified hospices in your area and compare their quality of care.

How to choose a hospice provider

Published by Hospice Foundation of America, September 24, 2024

Families often receive a referral to a specific hospice service. However, where there is more than one hospice service, families may choose which to enroll with. This article outlines considerations in comparing hospice services, including questions to ask and special considerations.

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.

Advanced Parkinson's Care Planning: Palliative Care, Hospice and End-of-Life Decisions

By Parkinson's Foundation, July 7, 2022

In this 56-minute webinar palliative care specialist Martha Twaddle, MD, explains palliative care, hospice services and resources for end-of-life decisions.

Expect the Best: How to Get the Most Out of Your Hospice Care

By Family Caregiver Alliance, January 27, 2021

In this one-hour webinar, registered nurse, Helen Bauer, and spiritual counselor, Jerry Fenter, both from The Heart of Hospice in Beaumont, TX, dispelled myths about hospice, offered suggestions for how to pick a good hospice service, explained the rights of patients, and who is involved on a hospice care team.

Webinar Notes are on the Stanford PD Community Blog.

Holistic and Supportive Care for Living Well With Parkinson's

By Davis Phinney Foundation, November 11, 2020

In this one-hour webinar, Dr. Christopher Tarolli speaks about how those with Parkinson's disease (PD) are often not well supported in their symptom management.  There is a better model of care for those with PD but it is not widely available.  Dr. Tarolli gives tips for finding the best experts in your area to be on your care team so you can live your best life with PD.

How to Choose the Best Hospice for Your Loved One

By End-of-Life University, January 17, 2024

Karen Wyatt, MD, is host of the End-of-Life University podcast. In this episode she talks with hospice nurse and author Barbara Karnes, RN, about why they hope people will choose hospice for care at the end of life and how to choose the right hospice for your loved one.

Understanding End-of-Life Care Options

By NIH National Institute on Aging, December 29, 2020

This four-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.

My Parkinson's Story: Advanced Parkinsons

By Veteran's Health Administration

This ten-minute video alternates between an interview with a man and his wife and his palliative care team, including a doctor, nurse, clergy and social worker. The man and his wife shares his experience with late stage Parkinson's. The palliative care team explains that their job is to support the best physical, emotional and spiritual wellbeing of the immediate family as well as help the family make end of life decisions.

Palliative Care

By Parkinson Association of Northern California, October 23, 2021

This 34-minute question and answer session was part of PANC’s 2021 annual conference.  UCSD palliative care physician Grace Amadi, MD, describes what “palliative care” means and its benefits to the person with PD, their caregiver, and their family.  She also shares how to to get the maximum benefit out of the palliative care experience.

Palliative care: Caring for the whole person

By Stanford APDA Information & Referral Center and Stanford Parkinson's Community Outreach, January 15, 2024

Jocelyn Jiao, MD, is both a palliative care doctor and movement disorder specialist at Stanford University. In this talk to the Stanford Palo Alto PD support group she discussed the big picture about an individual's whole health and defined palliative care.

You can download the slides. 

Webinar Notes are on the Stanford PD Community Blog.

Palliative Care for Parkinson's Disease

By American Parkinson Disease Association, September 7, 2022

In this episode of Dr. Gilbert Hosts, her guest is movement disorders specialist Jori Fleisher, MD. Dr. Fleisher has expertise in palliative care. She responded to audience questions about how the palliative care approach can benefit people with PD and help improve your quality of life throughout the continuum of disease.

Treating PD -- Quality of Life, Wellness, and a Neuro-palliative Approach

By Stanford APDA Information & Referral Center and Stanford Parkinson's Community Outreach, September 8, 2021

Maya Katz, MD, movement disorder specialist at Stanford University, speaks for about 45-minutes before answering questions.  Topics covered include how PD can be treated with a focus on wellness and quality-of-life, the importance of exercise (physical/movement, speech/voice, etc), the role of resiliency in PD, and what the term "Neuro-palliative" means.

You can download the slides.

What Is Palliative Care

By GetPalliativeCare.org

This two-minute video uses the metaphor 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.