While there are numerous books and videos on the subject of end-of-life issues, IFC volunteers have compiled a list of those they find particularly useful. This list, ordered by topic area, will build over time.
Hospice and End-of-Life Topics
‘I was completely unprepared’: Confronting my Sister’s Death Despite my father’s job as a funeral director, and my career studying death and dying, personal loss still floored me.
I’m Going to Die. I May as Well Be Cheerful About It. While death is inevitable, our attitude about it is not.
When Life Throws You Curveballs, Embrace the ‘New Normal’: For patients with life-altering illnesses or anyone just getting older, it helps to roll with the punches and make the best of the here and now.
Documenting the final moments between critically ill children and their families helped me come to terms with my cancer diagnosis. Read More Here
Check out our guide to understanding what it is and how to address it. When Opposites Attract, for Life: Of all the obstacles to initiating hospice care that have been cited, the devotion of wife to husband, or child to parent, is the hardest to quantify.
In Life’s Last Moments, Open a Window: People often imagine hospices to be dark and dismal places where there is nothing left to experience but dying. But what dominates my work is not proximity to death but the best bits of living. Nowness is everywhere.
Nature provides it. The Mystery of End-of-Life Rallies: Palliative care experts say it is not uncommon for people in hospice care to perk up briefly before they die, sometimes speaking clearly or asking for food.
Write Your Own Obit: Far from seeming narcissistic, undertaking a self-obituary can be a form of summation and of care giving for those who may be in need of direction after we are gone.
A visiting nurse for a palliative care agency explores what it means, on many levels, for humans to move into a realm where memory disappears and the sense of self shifts. A beautifully nuanced and thoughtful article, filled with examples from the author’s daily interactions with people in various stages of dementia. What to Say When You Meet the Angel of Death at a Party :
After years of living with stage IV cancer, this author has some suggestions. Outing Death: WeCroak is a jaunty little app devised to notify users five times a day, at seemingly random intervals, that try as we may to ignore it, there will be no dodging The End.
Where do you want to die? When asked, the vast majority of Americans answer with two words: “At home.”… Instead, many of us die in hospitals, subject to over medication and infection, often after receiving treatment that we do not want. The Symptoms of Protracted Dying:
In the final days of Geraldine’s life, a doctor asked if the family of another patient in the ICU could visit Geraldine to see what prolonged dying looked like. Geraldine’s family was kind enough to agree. The visiting family chose to transition their loved one to hospice care. Swedish death cleaning is the new decluttering trend:
In Swedish, the word is “dostanding” and it refers to the act of slowly and steadily decluttering as the years go by, ideally beginning in your fifties (or at any point in your life) and going until the day you kick the bucket. A book: Being Mortal:
A doctor visits an elderly, terminally ill woman who’s been her patient for more than 20 years and reconfirms the invaluable benefits of hospice care. Hoyahey, Today is a Good Day:
A thoughtful, moving, and conversation-opening blog post by Aliyah Alexander, a Crestone, Colorado resident. Aliyah has lived for a number of years with increasingly limited mobility from a neurological disease. She no longer has use of most of her body and is under hospice care, yet her inner radiance and depth of wisdom have become increasingly clear and strong. She has been an active, thoughtful, and compassionate advocate for end of life choices. Five Invitations: What Death Can Teach About Living, by Frank Ostaseski:
Those who work with the terminally ill, such as social workers and hospice caregivers, call these episodes or visions a manifestation of what is called Nearing Death Awareness. One Man’s Quest to Change the Way We Die: How B.J. Miller, a doctor and triple amputee, used his own experience to pioneer a new model of palliative care at a small, quirky hospice in San Francisco.
Natural Path Sanctuary: The nature preserve encompasses 25 acres of woods and meadows that include a pond and rocky ridges. The nature preserve has been platted as a natural burial grounds which ensures the natural preservation of the land in perpetuity. Visit www.naturalpathsanctuary.org for information about the natural burial grounds/green cemetery located in the nature preserve.
Washington becomes first state to make human composting legal: Isn’t it weird that humanity has advanced so far when it comes to technology, and yet, we have only two options for disposing of human bodies after death? There’s a traditional burial, which requires wood and steel and means leaking dangerous chemicals into the ground, and cremation, which both burns energy and emits carbon in the process. Even though we may not like to think about disposing of the dead, there has to be a better solution—at least, for the sake of the environment.
Tennessee Natural Burial Ground Will Offer a Simpler Farewell: Larkspur Conservation in Sumner County, Tenn., encompasses 112 acres of serene rolling hills protected by a conservation easement through the Nature Conservancy. Larkspur’s founders hope it will offer families a greener — and cheaper — way to lay their loved ones to rest in a beautiful place.
Burning Out: What Really Happens Inside a Crematorium: Four decades ago, less than 5 percent of Americans were cremated. Now that figure stands at nearly 50 percent. This is how cremation actually works, and the story of what happens to a culture when its attitudes about memorializing the dead undergo a revolution.
An Alternative to Burial and Cremation Gains Popularity: “What do you want done with your body after you die? It is an unnerving but important question, and for most Americans there have long been only two obvious choices: burial or cremation. But a third option, a liquefaction process called by a variety of names — flame-less cremation, green cremation or the “Fire to Water” method — is starting to gain popularity throughout the United States…”
“The best-selling author of Smoke Gets in Your Eyes expands our sense of what it means to treat the dead with ‘dignity.’ Fascinated by our pervasive fear of dead bodies, mortician Caitlin Doughty set out to discover how other cultures care for the dead. From Here to Eternity is an immersive global journey that introduces compelling, powerful rituals almost entirely unknown in America.” A book: Caring for the Dead: Your Final Act of Love: by Lisa Carlson. This is a comprehensive guide for those making funeral arrangements without engaging a professional funeral director.
Disposition Rules and Regulations are provided for every state. A book: Smoke Gets In Your Eyes: And Other Tales from the Crematory: by Caitlin Doughty. Honest and heartfelt, self-deprecating and ironic, Caitlin’s engaging style makes this otherwise taboo topic both approachable and engrossing…she argues that our fear of dying warps our culture and society, calling for better ways of dealing with death (and our dead).
How to Speak Grief: Loss is messy, melancholic and often darkly hilarious. It also lingers forever. Here’s a glossary that takes all that into account. Use it well.
Living Memory Yizkor boxes: Copper artist Shahna Lax creates beautiful memorial candle settings and boxes. She writes about how small items can evoke vivid memories of a loved one, and can fit into a compact space.
A book: Dying: A Memoir, by Cory Taylor. A Bracing Illumination of Terminal Illness. A New York Times review by Jennifer Senior, published July 26, 2017
When Breath Becomes Air: by Paul Kalanithi. One day he is a doctor healing the dying; the next a patient struggling to live. This deeply moving personal account by Kalanithi, finds hope and beauty in the face of insurmountable odds.
Mortality: by Christopher Hitchens. Funny, smart, irreverent, and surprisingly moving, this lucid, unflinching end-of-life journey through “Tumorville” is brave and powerful stuff…a heartbreaking display.
Cry, Heart, But Never Break: A Remarkable Illustrated Meditation on Loss and Life, Glen Ringtved (author), Charlotte Pardi (illustator) Published in February 2016, this is a great children’s book about making sense of death. Authored by Danish children’s book author Glenn Ringtved, illustrated by Charlotte Pardi, and translated into English by Robert Moulthrop. From Amazon description, “Aware their grandmother is gravely ill, four siblings make a pact to keep death from taking her away. But Death does arrive all the same, as it must. He comes gently, naturally. And he comes with enough time to share a story with the children that helps them to realize the value of loss to life and the importance of being able to say goodbye.”
CEOLP and End of Life Issues Featured in New HBO Films In mid-August, two films related to end-of-life issues, directed and produced by Perri Peltz and Matthew O’Neill (of HBO’s “Axios”), were released by HBO Documentaries.The Crestone End of Life Project and the late Aliyah Alexander are the subject of the short (13-minute) documentary, Funeral Pyre, an on-demand release for subscribersAlternate Endings (1 hr. 8 min.) can be streamed on demand for subscribers until Sept. 18, 2019 from HBO’s website. It will be aired on television on these dates: Fri. Sep 13 at 12:45 am (Mountain Time) on HBO2; Fri., Sep 27 at 1:22 am MT on HBO LATINO; and Fri., Sep 27 at 1:25 am MT on HBO.
Grief Walker documents the work of Stephen Jenkinson with the dying.
Kristina’s Goodbye; a moving YouTube video, Kristina’s Goodbye shares one woman’s perspectives at the end of life.
Lady Ganga: Nilza’s Story, a documentary of Michele Baldwin’s decision, as she was dying of cervical cancer, to use her death to benefit others, by bringing awareness of cervical cancer and its treatment to remote Indian/Nepali villages.
This film captures the importance of individuals and groups sharing their thoughts on end-of-life wishes, and completing the paperwork that will support those wishes in being fulfilled. What Really Matters at the End of Life, B.J. Miller TED Talk, filmed March 2015 (20 minutes).
From the TED Talk excerpt, “BJ Miller is a hospice and palliative medicine physician who thinks deeply about how to create a dignified, graceful end of life for his patients. Take the time to savor this moving talk, which asks big questions about how we think on death and honor life.” What Tibetan Book of the dead (full documentary 2 parts) According to Buddhist scholar and translator Robert Thurman (father of Uma), The Tibetan Book of the Dead, or Bardo Thodol, “organizes the experiences of the between—(Tibetan, bar-do) usually referring to the state between death and rebirth.” While The Book of the Dead has, of course, a long and illustrious history in Tibetan Buddhist life, it also has its place in the history of the West, particularly among 20th century intellectuals and artists. In the 1950s, for example, there was talk among Igor Stravinsky, Martha Graham, and Aldous Huxley to turn the Bardo into a ballet with a Greek chorus. Huxley, who famously spent his final hours on an acid trip, asked that a passage from the book be read to him as he lay dying: “Hey! Noble one, you named Aldous Huxley! Now the time has come for you to seek the way….”
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The Crestone End of Life Project is our community group based in Crestone, Colorado.
Poetry & Photography
Read poetry about the sacredness of transition from life into death. To share in reflection, remembering or as part of a farewell or memorial ceremony.