Resources
I am (and always have been!) a resource person. It is a coping skill of mine to seek out and utilize all available and relevant resources when I encounter a challenge. Such resources have guided me and made things easier when I've struggled. I hope the resources I've included here can do the same for you.
Along the way, I have found other resource people who have done quite a bit of legwork in gathering helpful information. I would like to especially thank Laura Hoekstra of GraceintheLeaving.com who generously agreed to share her abundant resources so that I might pass them on to you--thank you, Laura!
Also, please note that some of the book recommendations are from the wonderful site deathdoulas.com. They are part of the Amazon Affiliate Program and they earn a small percentage of your purchase without any cost to you.
General Resources
Resources for talking about end-of-life wishes with loved ones
A super simple site offering free worksheets to work on advanced care planning (or advanced directives).
Advance Directive Forms State by State
Advance Directives: An excellent resource site offering information on advanced directives.
POLST forms by state MOLST forms by state
Out of the Box End of Life Planning
Create your own unique Exit File™ as a map to record and communicate your wishes, to aid and guide your family in the time of a medical crisis or your death.
The Nokbox is a complete system that helps you organize all of your accounts, possessions, social media presence, communities, kids, pets, personal history, and estate plans (even if you don’t have estate plans yet!). The Nokbox covers every aspect of your life (even down to the organization of your keys) and also helps your NOK manage your estate when you are gone.
Gift of Life-Transplantation Society of Michigan
Organ and tissue donor registry enrollment and information
(800) 482-4881
Online self-help tools; forms and guides for wills and life planning; public assistance
(English and Spanish)
The Michigan Hospice and Palliative Care Organization
Extensive guide to available hospice care in Michigan
(800) 536-6300 (free resource)
National Resource Center on LGBT Aging
Focus on improving quality of services and support offered to LGBTQ+ older adults, their families, and caregivers
(English, Spanish, and translation in other languages)
Sage Hotline (877) 360-5428 (free service)
National Hospice and Palliative Care Organization
Information for patients, families, and caregivers. Hospices are wonderful organizations that serve individuals with a life expectancy of 6 months or less. Individuals do not need to be actively dying to seek the help of hospice. Some individuals do better and even leave hospice. We recommend engaging their fabulous services sooner rather than later.
VSED Resources Information on Voluntarily Stopping Eating and Drinking
Death with Dignity: The mission of the Death with Dignity National Center is to promote Death with Dignity laws based on the model Oregon Death with Dignity Act, both to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care.
Legacy
Forever Missed: Memorial Website
Creating a Legacy Project with the Help of a Death Doula helpful article
Caregiver Resources
Caregivers’ Resources: More and more people are caregiving for their aging or ill loved ones. Get the support needed if you are a caregiver.
Walk Her Up the Stairs: A Caregiver’s Healing & Spiritual Journey, by Loretta Fox https://amzn.to/3UnSVfb
Community Information
Death Cafés: Death Cafés are found all over the world and are a wonderful way to begin the conversation on death.
Death Over Dinner: A nonprofit organization supporting conversations on death through hosting dinner parties. From their website: “The dinner table is the most forgiving place for a difficult conversation. The ritual of breaking bread creates warmth and connection and puts us in touch with our humanity. It offers an environment that is more suitable than the usual places we discuss end of life.
Reimagine End of Life: From their website: “Reimagine End of Life is a community-wide exploration of death and celebration of life through creativity and conversation. Drawing on the arts, spirituality, healthcare, and design, we create weeklong series of events that break down taboos and bring diverse communities together in wonder, preparation, and remembrance.”
Pediatric Resources
Courageous Parents Network (Links to an external site.) is a non-profit organization and educational platform that orients empowers and accompanies families and providers caring for children with serious illness.
Through videos, podcasts, printable guides, Guided Pathways, and blogs, you will find wisdom from families and pediatric care providers.
After Death Care
National Home Funeral Alliance: Educates and empowers families who want to care for their own dead. Connects families with resources to "promote environmentally sound and culturally nurturing death practices".
Information on green burial and locating certified cemetery stewards, funeral professionals, and funerary product sellers for more sustainable after-death options
(888) 966-3330
The Inspired Funeral: readings, songs, rituals.
Peaceful Decisions End of Life Planning Resources and Guides
Natural Transitions: A magazine and resource to green and holistic approaches to end of life.
Spirit Vessel Spirit Vessel offers mindfully handcrafted Ceramic Urns and personalized Celebration Of Life Ceremonies to assist in grieving, honoring, and celebrating you or your loved one.
Grief (see book lists below for additional titles)
What’s Your Grief: A website with articles on many types of grief
The American Counseling Association
The Handbook for Companioning the Mourner, Alan Wolfelt
Resources for Adults on Death, Grief, and Loss
BOOKS
Everything Happens for a Reason: And Other Lies I’ve Loved — Kate Bowler
The Year of Magical Thinking — Joan Didion
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying — Maggie Callanan and Patricia Kelley
Death Is But a Dream: Finding Hope and Meaning at Life’s End — Christopher Kerr MD, PhD
A Long Letting Go: Meditations on Losing Someone You Love - Marilyn Chandler McEntyre
Disaster Falls: A Family Story — Stephane Gerson
The Night Lake: A Young Priest Maps The Topography of Grief — Liz Tichenor
7 Lessons from Heaven: How Dying Taught Me to Live a Joy-Filled Life — Mary C Neal, MD
Mistaken Identity: Two Families, One Survivor, Unwavering Hope — Don & Susie Van Ryn, Newell, Colleen & Whitney Cerak with Mark Tabb
Grieving Well: A Healing Journey Through the Season of Grief - Terri DeBoer/Janet Jaymin and contributors
Hope for the Best, Plan for the Rest: 7 Keys to Navigating a Life-Changing Diagnosis, Winemaker and Seow
By Your Side, Caring for the Dying at Home, Barbara Karnes
Bold Spirit Caring for the Dying, Janet Booth * Gale Gagnier * Terrence Ho *Lesley James * Ashlee Jansen * Shannon Koppenhoefer * Janice Lombardo * Tamelynda Lux * Olga Nikolajev *Siby Varghese * Chrystal Waban
The Art of Dying Well: A practical guide to a good end of life, Katy Butler
Advice for Future Corpses and Those Who Love Them, Sallie Tisdale
Awake at the Bedside: Contemplative Teachings on Palliative and End-of-Life Care, Koshin Paley Ellison and Matt Weingast
Caring for the Dying, Henry Fersko-Weiss
A Beginner's Guide to the End, BJ Miller MD and Shoshana Berger
The Handbook for Companioning the Mourner, Alan Wolfelt
Grieving Is Loving: Compassionate Words for Bearing the Unbearable, Dr. Joanne Cacciatore
Bearing the Unbearable, Dr. Joanne Cacciatore
The Modern Loss Handbook: An Interactive Guide to Moving Through Grief and Building Resilience, Rebecca Soffer
What's Your Grief?: Lists to Help You Through Any Loss, Haley and Williams
The Wild Edge of Sorrow, Francis Weller
A Grief Observed, C. S. Lewis
A Year of Magical Thinking, Joan Didion
What to Do When I am Gone: A Mother’s Wisdom to Her Daughter, Suzy Hopkins.
A Gentle Practice for Tough Times: Contemplations for Dying and Living, Ellen Hufschmidt
Voluntarily Stopping Eating and Drinking: A Compassionate, Widely-Available Option for Hastening Death by Timothy E. Quill (Editor), Paul T. Menzel (Editor), Thaddeus Pope
The VSED Handbook, Kate Christie
The Day I Die: The Untold Story of Assisted Dying in America, by Anita Hannig
In Love: A Memoir of Love and Loss, Amy Bloom
How We Live is How We Die, Pema Chodron
Being Mortal, Atul Gawande
The Three Regrets, Tenzin Kiyosaki
When Breath Becomes Air, Paul Kalinithi
Die Wise, Stephen Jenkinson
Holding Space on Loving, Dying, and Letting Go, by Amy Wright Glenn
Re-Imagining the End of Life: Self-Development & Reflective Practices for Nurse Coaches, Jan Booth
The Five Invitations, Frank Ostaseski
The Grace in Dying, Kathleen Dowling-Singh
A Year to Live, Stephen and Ondrea Levine
Who Dies? Stephen and Ondrea Levine
Dying Well, Ira Byock
How to Enjoy Death: Preparing to Meet Life’s Final Challenge without Fear, Lama Zopa Rinpoche
With Our Own Hands: A Guidebook to Ritual Blessing of the Dead, Ellen Hufschmidt
Walking Each Other Home, Ram Dass
Momento Mori: The Art of Contemplating Death to Live a Better Life, Joanna Ebenstein
The Conversation, Volandes, MD
At Home With Dying, Collett
Extreme Measures, Jessica Zitter, MD
Through the Valley of Shadows: Living Wills, Intensive Care, and Making Medicine Human, Samuel Morris Brown
The Lost Art of Dying, L.S. Dugdale
Tuesdays With Morrie, Mitch Albom
Marrow, Elizabeth Lesser
Graceful Exit, Ferrer, MD
The Tibetan Book of the Dead
Dancing with Elephants, Jarem Sawatsky
From Here to Eternity, Caitlin Doughty
The Good Funeral, Long and Lynch
Making Friends with Death: A Buddhist Guide to Encountering Mortality, by Judith L. Lief
No Death, No Fear: Comforting Wisdom for Life, by Thich Nhat Hanh (Riverhead)
Living in the Light of Death: On the Art of Being Truly Alive, by Larry Rosenberg
Leaning Into Sharp Points: Practical Guidance and Nurturing Support for Caregivers, by Stan Goldberg
Staring at the sun: Overcoming the terror of death, by Irving Yalom
Being with Dying: Cultivating compassion and fearlessness in the presence of death, by Joan Halifax
The End of Fear: A spiritual path for realists, by Richard Schaub
Overcoming the Fear of Death: Through each of the 4 main belief systems, by Kelvin Chin
Share the Care, by Capossela and Warnock
At the Time of Death: Symbols & Rituals for Caregivers and Chaplains, by David Bieniek
You’ve Reached Sam, by Dustin Thao - a Young Adult Novel
Websites
National Alliance for Grieving Children
Center for End of Life Transitions
Resources for Children, Pre-Teens, and Teens on Death, Grief, and Loss
LOSS OF PET
The Dead Bird – Margaret Wise Brown
I’ll Always Love You – Hans Wilhelm
The Tenth Good Thing About Barney – Judith Viorst
Goodbye, Mousie – Robie H. Harris
Tough Boris - Mem Fox
Where Lily Isn’t - Julie Paschkis
Tim’s Goodbye - Steven Salerno
The Day Tiger Rose Said Goodbye - Jane Yolen
The End of Something Wonderful: A Practical Guide to a Backyard Funeral - Stephanie Lucianovic
Rosie & Crayon - Deborah Marcero
LOSS OF SIBLING
Jenny: Coming to Terms With the Death of a Sibling – Stephanie Jeffs and Jaqui Thomas
What is Goodbye? - Nikki Grimes
Mama Bird Lost An Egg - Evelyn Fournier
Remembering Ethan - Leslea Newman
Finn’s Feather - Rachel Noble
LOSS OF PARENT
The Pond - Nicola Davies
My Big Dumb Invisible Dragon - Angie Lucas
Dancing at the Pity Party: a Dead Mom Graphic Memoir - Tyler Feder
One Wave at a Time - Holly Thompson
Mom’s Sweater - Jayde Perkin
Everett Anderson’s Goodbye – Lucille Clifton
If You Listen – Charlotte Zolotow
How it Feels When a Parent Dies – Jill Krementz
LOSS OF GRANDPARENT/AUNT/UNCLE
Each Little Bird That Sings – Deborah Wiles
Sarah’s Grandma Goes to Heaven: A Book About Grief – Maribeth Boelts
Grandpa’s Stories: A Book of Remembering - Joseph Coelho
Cry, Heart, But Never Break - Glenn Ringtved
Sweet, Sweet Memory – Jacqueline Woodson
I Miss My Grandpa - Jin Xiaojing
A Path of Stars - Anne Sibley O’Brien
Granddad’s Prayers of the Earth – Douglas Wood
LOSS OF FRIEND
Balloons for Trevor – Anne Good Cave
Badger’s Parting Gifts – Susan Varley
Gentle Willow – Joyce Mills
Matylda, Bright & Tender - Holly McGhee
A Map Into the World - Kai Kailua Yang
GRIEF WORKBOOKS FOR CHILDREN
It’s Okay to Cry: An Interactive Recovery Workbook – H. Norman Wright
Someone I Love Died – Christine Harder Tangvald
Help Me Say Goodbye – Janis Silverman
My Grieving Journey Book – Donna and Eve Shavatt
When Someone Very Special Dies: Children Can Learn to Cope With Grief – Marge Heegaard
The Healing Book - Ellen Sabin
The Gift of a Memory: A Keepsake to Commemorate the Loss of a Loved One - Marianne Richmond
GENERAL BOOKS FOR CHILDREN ON DEATH, LOSS, AND GRIEVING
Why Do I Feel So Sad? - Tracy Lambert
Something Very Sad Happened: A Toddler’s Guide to Understanding Death - Bonnie Zucker
After the Funeral – Jane Loretta Winsch
Where Do They Go? - Julia Alvarez
Sad Isn’t Bad: A Good-Grief Guidebook for Kids Dealing With Loss – Michaelene Mundy
Lifetimes: The Beautiful Way to Explain Death to Children – Bryan Mellonie and Robert Ingpen
I Miss You: A First Look at Death – Pat Thomas
The Secret Remedy Book: A Story of Comfort and Loss – Karin Cates
Tear Soup: A Recipe for Healing After Loss – Pat Schweibert and Chuck DeKlyen
Someone I Love Died – Christine Harder Tangvald
Ride to the Stars - Suzanne Gene Courtney
It Must Hurt A Lot: A Child’s Book About Death - Doris Sanford
The Saddest Time - Norma Simon
What Happens When A Loved One Dies? - Jillian Roberts
The Phone Booth in Mr. Hirota’s Garden - Heather Smith
BOOKS FOR PRE-TEENS AND TEENS
How it Feels When a Parent Dies – Jill Krementz
The Fall of Freddie the Leaf: A Story of Life for All Ages – Leo Buscaglia
Dancing at the Pity Party: A Dead Mom Graphic Memoir - Tyler Feder
When A Friend Dies: A Book for Teens About Grieving & Healing – Marilyn Gootman
Death: Coping With the Pain – Eileen Kuehn
Grounded - Kate Klise
Matylda, Bright & Tender - Holly McGhee
Teen Mental Health: Death and Bereavement - Kornfield, Waters, and Furgang
Death - Janine Amos
I Felt a Funeral, In My Brain - Will Walton
(Caregivers are encouraged to read these books first, they may not all be appropriate for every age or situation.)
When Someone Dies, Sharon Greenlee
What Color is Death, Daddy?, Dr. Joanne Cacciatore
How Do You Care for A Very Sick Bear, Vanessa Bayer
The Goodbye Book, Todd Parr
I’ll See You in Your Dreams Tonight: A Book of Hope for Grieving Kids, Katie Cosgrove
Duck, Death and the Tulip, Wolf Erlbruch
Always Remember, Cece Meng
The Dragonfly Story: Explaining the death of a loved one to children and families, Kelly Owen
Bear and Bird, James Skofield and Jennifer Thermes
The Memory Tree, Britta Teckentrup
Maybe Dying is Like Becoming a Butterfly, Pimm van Hest
Nana Upstairs and Nana Downstairs, Tomie dePaola
Death is Stupid, Anastasia Higginbotham
The Invisible String, Patrice Karst
Little Tree, Loren Long
The Flat Rabbit, Bardur Oskarsson
Cry Heart, But Never Break: Glenn Ringtved, Charlotte Pardi
When Miss Bluebird Died, Jennifer Reich, Kristine Kollasch
When Dinosaurs Die, Laurie Krasny Brown and Marc Brown
Wherever You Are, my love will find you, Nancy Tillman
A Stone for Sascha, Aaron Becker
Tess’s Tree, Jess M. Brallier
A Terrible Thing Happened, Holmes and Mudlaff
When I Feel Sad, Cornelia Maude Spelman
The Purple Balloon, Raschka
The Heart and the Bottle, Oliver Jeffers
Lasting Love, Wright and Heath
When Sadness is at Your Door, Eva Eland
Charlotte’s Web, E.B. White
The Memory Box: A book about grief, Joanna Rowland
Boats for Papa, Jessica Bagley
Map of Memory Lane, Arnoldy
Resources for Parents, Teachers, and Caregivers
BOOKS
Helping Children Grieve & Grow: A Guide for Those Who Care – Donna O’Toole
Why Did You Die? Activities to Help Children Cope with Grief & Loss - Erika Leeuwenburgh
Part of Me Died, Too: Stories of Creative Survival Among Bereaved Children and Teenagers – Virginia Lynn Fry
Water Bugs and Dragonflies: Explaining Death to Young Children – Doris Stickney
The Grieving Child: A Parent’s Guide – Helen Fitzgerald
Talking With Children About Loss: Words, Strategies, and Wisdom to Help Children Cope with Death, Divorce, and Other Difficult Times – Maria Trozzi
Keys to Helping Children Deal With Death and Grief – Joy Johnson
The Loss That is Forever: The Lifelong Impact of the Early Death of a Mother or Father – Maxine Harris
Never the Same: Coming to Terms with the Death of a Parent – Donna Schuurman (Kindle)
Guiding Your Child Through Grief – Mary Ann and James Emswiler
Helping Children Cope with the Loss of a Loved One: A Guide for Grownups – William Kroen (Kindle)
Movies
The Fault in Our Stars - a love story between two young cancer patients
Paddleton - Two friends deal with Medical Aid in Dying
Tuesdays With Morrie
Lullabye
The Life of Death (animated on YouTube)
Departures
The Farewell
A Monster Calls
A Good Death
Two Weeks (Starring Sally Fields)
My Girl
Terms of Endearment
After Life
Soul (Disney)
Coco
Ms. White Light Amazon Prime
Documentaries
Zen and the Art of Dying - profiles Zenith Virago
Griefwalker - profiles Stephen Jenkinson
Speaking Grief https://speakinggrief.org/documentaryAn Honest Death
Dying Wish (VSED)
The Handmade Death of Herta Sturmann (VSED)
Rosemary Bowen (VSED)
End Game
Extremis
Go in Peace
Surviving Death (Netflix)
This organization has created three stunning documentaries about the end of life. I cannot recommend these highly enough. They will change the way you see death.
Spotify Playlists
Therapy Music for Hospice and Palliative Care: Music for Comfort and Healing
Winter Instrumentals
Music, General
In August 2022 on the Best Life Best Death podcast, they spoke with Jan Booth, end-of-life nurse, coach, educator and musician. As a member of Threshold Choir thresholdchoir.org, she and others bring “kindness made audible” to the bedside of people at the end of life.
Jan shared the following resources:
- Rise Up Singing songbook – folk songs, spirituals, kids songs, etc. Rise Up Singing | Rise Up and Sing
- Lisa Littlebird, song leader teacher and community singing advocate: Songs – The Bird Sings
- Think of songs you know or have heard that would be a good match for singing for people in the last part of their lives…or to sing to yourself before going to be with someone who is dying. Here are a few ideas:
- Longtime Sun, sung by Snatam Kaur
- Blessing to the World, by Karen Drucker
- Spotify playlist called Threshold Choir (These are some Threshold songs or similar vibe that have been recorded and available to the public…otherwise, Threshold songs are most often only available for Threshold singers.). Some easier ones to learn:
-
- May Only Love Surround You
- I’ll Walk With You
- Standing Stone
- Let Peace Come
- Calming, Resting, Breathing
-
- Take a simple phrase and put a simple melody to it, as in this song by Heather Houston: You Are So Loved — Heather Houston – Heather Houston Music
- Consider simple words that reflect love, kindness, peace, community, caring, simple melodies that are easy to sing and learn, and singing in a quiet voice that is almost lullaby-like.
- Harps of Comfort
Songs
I Don’t Want to Die in the Hospital, Connor Oberst
I’ll Fly Away, Multiple artists
Sirens, Pearl Jam
Paths That Cross, Patti Smith
Keep Me In Your Heart, Warren Zevon
When I Go Away, Levon Helm
Brokedown Palace, Grateful Dead
I Shall Be Released, The Band, Joe Cocker, and others
People Get Ready, Eva Cassidy
Fixin’ To Die, Rory Block, Bonnie Raitt, and others
Company of Friends, Danny Schmidt
Tears in Heaven, Eric Clapton
For a Dancer, Jackson Browne
Say, John Mayer
Long May You Run, Neil Young
Take it with Me, Tom Waits
Time, Tom Waits
Shiver Me Timbers, Tom Waits
You Can Never Hold Back Spring, Tom Waits
No One Knows I’m Gone, Tom Waits
Let The Mystery Be My Life, Iris Desment
Not Afraid To Die, Avett Brothers or Gillian Welsh
When All is Said and Done, Geoff Moore and the Distance
Wide River to Cross, Buddy Miller
Podcasts
Everything Happens with Kate Bowler (Apple)
Always Andy’s Mom (locate episodes on andysmom.com)
Healing with David Kessler (Spotify
End of Life University - Karen Wyatt, MD - over 200 episodes! End of Life University: Created by Dr. Karen Wyatt, a website, podcast, and resource for anything and all Death Education.
Death: the Podcast
Dead Funny, Dead Serious with Mitzi Weiland
Death by Design Kimberly Paul
Death, et seq. Tanya Marsh
Doing Death: Amanda Blainey
Death in the Afternoon: Caitlin Doughty
Apps
WeCroak
For Caregivers (free)
Other