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These resources are shared to help you better understand end-of-life, prepare for important conversations, and feel more supported in navigating what can often feel unknown.

Resources for Reflection & Planning


EDUCATIONAL and SUPPORTIVE ORGANIZATIONS


Family Caregiver Alliance-

 Services By State: Pennsylvania - Family Caregiver Alliance 


INELDA – International End of Life Doula Association-online webinars for a good death

 https://inelda.org


The Conversation Project helps people start meaningful conversations about end-of-life wishes so their care reflects hat matters most.
https://theconversationproject.org


End of Life Choices New York- Provides free guidance and information on end-of-life planning; support for non–New York residents may be limited. -  Provides free guidance and information on end-of-life planning; support for non–New York residents may be limited. 


The Compassion & Choices website is a comprehensive resource on end-of-life planning, including support and information related to dying and dementia. I have included just a brief glimpse of their offerings here. Links are active on the site.

  • My End-of-Life Decisions: An Advance Planning Guide and Toolkit will help you work through your end-of-life priorities and empower you to have valuable discussions with your healthcare providers. It includes tear-out sheets for advance care planning. The 40-page toolkit is available for download or a free hard copy can be ordered. 
  • Dementia Values and Priorities Tool
  • The history of VSED
  • Personal perspectives
    • Journal of My Mother's Death, a VSED Chronicle, by Marcia Sloane — C&C storyteller Marcia Sloane details her mother's experience choosing to VSED after a long and happy life.
  • Compassion & Choices tools and resources
    • A Patient's Guide to Personal Advocacy

  


Pennsylvania Hospice & Palliative Care Network
https://pahospice.org


Bucks County Elder Law LLC
https://buckscountyelderlaw.com



GRIEF & EMOTIONAL SUPPORT


 Grief Share
https://www.griefshare.org


Modern Loss
https://modernloss.com


The Loss Foundation
https://thelossfoundation.org



LEGAL & PLANNING


Pennsylvania Order for Life-Sustaining Treatment- POLST form 

 

Advance Directive for Voluntary Stopping of Eating and Drinking- A VSED directive is not a standardized form. Instead, it is typically created as a personal addendum to your Medical Advanced Directive, and ought to be used alongside a Pennsylvania Order for Life-Sustaining Treatment (POLST).


A documented VSED directive allows you to thoughtfully express your wishes around voluntarily stopping eating and drinking in the context of serious illness, suffering, or loss of quality of life—guided by your own values and sense of dignity. I offer a general-use VSED addendum, developed to support clarity and peace of mind. If you prefer to explore this on your own, you can create a document using trusted resources such as Compassion and Choices.


By Your Side, A Guide for Caring for the Dying as Home- knowledge and support for providing care at home. This 72-page spiral-bound guidebook addresses end of life choices (life sustaining, comfort care), advance directives, and funeral planning. It details signs of approaching death (what to look for, what to do); describes end of life care at home, pain management, care of dementia patients at end of live, and very importantly for the caregiver, how to take care of yourself as you fulfill your role.


Triage Cancer
https://triagecancer.org


National Institute on Aging
https://www.nia.nih.gov


Washington Law Help
https://www.washingtonlawhelp.org



ALTERNATIVE BURIAL OPTIONS


Earth Funeral
https://earthfuneral.com


Aquamation
https://aquamationinfo.com



COMMEMORATION & LEGACY


Loose Ends Project
https://www.looseendsproject.org


Center for Grief Therapy
https://centerforgrieftherapy.com


Remembering A Life
https://rememberingalife.com



VIDEOS


Being Mortal (FRONTLINE)
https://www.pbs.org/wgbh/frontline/documentary/being-mortal/


YOUTUBE

Dying Your Way- The “Dying Your Way” video content offers thoughtful conversations and insights on end-of-life planning, featuring voices from caregivers, professionals, and individuals sharing real experiences. They offer a free ebook: FACING DEATH-What Do I Do Now?  


FACEBOOK

Dying Your Way


BOOKLETS FOR CAREGIVERS/DVD SET-NEW RULES

Barbara Karnes
https://bkbooks.com



BOOKS


Dear Death,: Finding Meaning in Life, Peace in Death, and Joy in an Ordinary Day


Dying Well: Peace and Possibilities at the End of Life

 

The Best Care Possible: A Physician's Quest to Transform Care Through the End of Life


 Voluntarily Stopping Eating and Drinking- A Compassionate and Widely Available Option for Hastening Death 

  

At Peace: Choosing a Good Death After a Long Life, by Samuel Harrington MD- https://a.co/d/05V334Ku- In At Peace, Samuel Harrington draws on decades of medical practice and personal experience to explore what it means to have a “good death” after a long life. He gently challenges the default use of aggressive medical interventions at the end of life, showing how they can sometimes prolong suffering rather than support comfort. Through real-life examples and clear guidance, he encourages honest conversations, thoughtful advance care planning, and a shift toward comfort-focused care, including hospice when appropriate. The book offers a compassionate, practical perspective on approaching the end of life with dignity, clarity, and peace. 


Finishing Strong: Putting Your Priorities First at Life's End by Barbara Combs Lee


Choosing to Die: A Personal Story, by Phyllis Shacter — This is perhaps the first personal story ever written about the choice and experience of voluntarily stopping eating and drinking. https://www.amazon.com/s?k=Choosing+to+Die+A+Personal+Story


The Good Death: A Guide for Supporting Your Loved One through the End of Life, by Suzanne B. O’Brien RN- https://a.co/d/0hznVxIy


The In-Between: Unforgettable Encounters During Life's Final Moments, by Hadley Vlahos R.N.-https://a.co/d/0a0ZG0ZR


Herself to the End  by Fran Volkmann  -   Facing an Alzheimer's diagnosis one courageous woman chooses to end her life by VSED (Voluntary Stopping Eating and Drinking). 



PODCASTS

Search within your preferred podcast app for hospice, end-of-life, and grief-related conversations.

  •  Real Talk Podcast' with end-of-life expert Barbara Karnes, RN


  • Dying Your Way- Apple Podcast


Take what feels helpful. Leave what doesn’t.

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