Books, Websites, TED Talks,
to help you explore and talk
about your wishes and
become a force of change in
your family and the community.
• Books •
There are so many.
Here's a few to start!
Being Mortal: Medicine and What Matters at the End
Atul Gawande, 2014.
Dr. Gawande, a practicing and teaching surgeon, and an award-winning medical writer argues for conscious conver-sations about end of life care -- what does the patient want, fear, need in this final stage of life. A very human approach to what we need, and what the medical profession needs to do and understand in this final phase of life.
The Conversation: A Revolutionary Plan for
Angelo E. Volandes, 2015
Dr. Volandes’ telling of seven deaths illustrates and illuminates how and why we fail the dying and their families, and what we can all do to make this an easier, more patient- and family-centered passage.
Curing Medicare: One Doctor’s View of How Our Health Care System is Failing the Elderly and How to Fix It
Andy Lazis, 2014.
From a geriatric specialist who wants desperately to care for his elderly patients with compassion and kindness, but finds himself thwarted at every turn by an overzealous medical culture, irrational regulations, and perverse Medicare payments that too often make sending patients to hospital the easiest option.
Can’t We Talk About Something More Pleasant [A Memoir]
Roz Chast, 2014.
In this delightfully honest, very readable graphic novel, Chast spans the last several years of her parents lives, bringing her signature wit and humor to the topic of aging parents. Told through four-color cartoons, family photos, and documents, and a narrative as full of laughs as it is with tears, Chast's memoir is both comfort and comic relief for anyone experiencing the life-altering loss of elderly parents. Many how-to and how-not-to insights into how to navigate this time of life.
Knocking on Heaven’s Door: The Path to a Better Way of Death
Katy Butler, 2014
This beautiful, intensely personal and highly readable book by acclaimed science writer Katy Butler recounts the physical travails and medical inter-ventions that accompany her elderly father’s downward spiral at the end of life and the toll it takes on her and her mother. With compassion and integrity and deeply engaging writing, Butler looks at the inevitable strain on care-givers and family members, considers the possibilities of the untapped palliative care, and ponders the closely allied arenas of prolonging death/saving a life.
Die Wise, A Manifesto for Sanity and Soul
Stephen Jenkinson, 2015
After two decades of experience in palliative care, Stephen Jenkinson came to a stunning conclusion: as a culture and a species, we are utterly unprepared to embrace death and the grief that comes with it. As a result, we deny a fundamental part of our own lives. With lyrical prose and deep wisdom, Jenkinson rescues death from the margins and places it in the center of the page, asking readers to behold it in all its painful beauty.
How We Die: Reflections on Life’s Final Chapter
Sherwin B. Nuland, 1994
Excellent coverage of the physical process of dying. While the medicalworld has changed since it was first published, bodies haven’t much, and many of the sameproblems exist; the 2010 coda brings it more up to date.
Dying the Right Way: A System of Caregiving & Planning for Families
Janice Louise Long, 2010
A guidebook on how to help a loved one with the many details and issues surrounding end-of-life care. Narrative provides insights, very readable.
Grave Matters: A Journey Through the Modern Funeral Industry to a Natural Way
Mark Harris, 2008
Although slightly dated, it’s still an extremely insightful and useful book. In the face of the billion-dollar-a-year funeral industry, former environmental columnist Harris provides details and information on the full spectrum of burial options, although he advocates green burial. Including specifics about probable costs, approaches, availability and more, this well-organized resource provides useful overview for anyone considering the disposition of a loved one.
Final Rights: Reclaiming the American Way of Death
Lisa Carlson and
Joshua Slocum, 2011
The two most prominent leaders of the funeral-related consumer protection movement are the authors of this book: Joshua Slocum, executive director of Funeral Consumers Alliance, and Lisa Carlson, executive director of Funeral Ethics Organization. Here they expose wrongdoings, inform consumers of their rights, and propose legal reforms. It includes state-by-state summaries of laws, regulations, services, and con-sumer concerns.
Preparing to Die: A guide for those facing death and their caregivers
Andrew Holecek, 2013.
This book, based on Tibetan thanatology, is meant as a practical guide from Part 1: spiritual preparation ("Living a good life, learning to let go"), what you can do for yourself and others before they die, what you can do for yourself and others as you die, what you can do for yourself and others after you die; Part 2: Practical approaches - legal concerns and advance directives, hospice, caring for the dying, after death care, working with grief; Part 3: Heart Advice from Tibetan Buddhist spiritual masters
• Website Resources •
Supporting the Conversation
The Conversation Project http://theconversationproject.org/
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. The Conversation Project emphasizes having a conversation on values — what matters to you, not what‘s the matter with you.
At a Death Cafe people, often strangers, gather to eat cake, drink tea and discuss death “to increase awareness of death with a view to helping people make the most of their (finite) lives”. A Death Cafe is a group-directed discussion of death.
Have Dinner & Talk About Death http://deathoverdinner.org/
Launched in 2013, Death Over Dinner is an international campaign inspiring thousands of
people to organize meals in which guests share food, wine and conversation about the ultimate topic: death. Dinners begin with a toast to deceased loved ones. Founder Michael Hebb believes sharing a meal is the key to fostering relaxed, intimate and frank conversations about death. “This is what the table does well,” he says. The website walks people through the process, offering customized invitations, discussion questions and pre-dinner homework.
Center for Practical Bioethics Includes the Caring Conversations toolkit
For over 30 years, the Center for Practical Bioethics has been a leader in providing guidance and resource materials for bioethics advocacy, end-of-life care and health policy advancements. With thousands of FREE educational resource materials to share with your friends, family and colleagues!
Sacred Art of Living Center (Bend) sacredartofliving.org
Programs and resources include Soul & Science, AnamCara, Sacred Art of Living and Dying and Enneagram. Programs are based on a creative learning model that integrates history, science, depth psychology and spiritual insight with practical tools and clinically tested best practices. The art of diagnosing and responding to spiritual suffering has universal applications for both professional and family caregivers.
The Metta Institute
Established to provide education on spirituality in dying and inspired by the Buddhist tradition, we encourage the integration of the spiritual dimensions of living, dying and transformation, through professional training, educational programs and materials.
Our Institute was formed in 2004 as an outgrowth of the Zen Hospice Project (ZHP), nationally recognized as a pioneering model in the movement to improve end-of life care. Our Director,Frank Ostaseski, helped form ZHP in 1987, and guided the program for 17 years.
Natural Transitions naturaltransitions.org
A non-profit RESOURCE CENTER 501(c) (3) providing education on conscious, holistic, and green approaches to end of life, including family-directed home-based after-death care also known as “home funerals.”
The Groundswell Project http://www.thegroundswellproject.com/
Based in Australia, their website is introduced by beginning with “the D-Word”. Their goal is an upgrade on how we go about our dying matters and create a shift from generalized avoidance to deep engagement and social action?
Death: The Reckoning http://www.ttbook.org/series/death/death-reckoning
Radio Interviews on the death movement in America. Talks with experts about how to begin difficult conversations, and how they can transform both the dying and the surviving.
End of Life University http://www.eoluniversity.com/
End-of-Life University has been established to provide the resources and information you need to live fully, age fearlessly, and approach the last days of life with peace of mind and a sense of meaning and purpose.
Facing Mortality, Death Anxiety and Making Death Part of Life
A group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality.
OHSU Center for Ethics in Health
Not Dead Yet
A national, grassroots disability rights group opposing legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill and disabled people, helps organize and articulate opposition to these practices based on secular social justice arguments.
A 501(c)(3) nonprofit helping children, teens and adults, who are experiencing the pain of loss, to embrace life again. They provide peer-to-peer support with trained volunteers. They do not provide professional counseling.
The Dougy Center
The National Center for Grieving Children & Families
Provides support in a safe place where children, teens, young adults, and their families grieving a death can share their experiences. Support and training locally, nationally and internationally are provided to individuals and organizations seeking to assist children in grief.
Northwest Association for Death Education and Bereavement Support
A non-profit organization of professionals and lay volunteers that exists to promote quality death education and bereavement support and promoting the interchange and development of related theory, research and clinical practices.
Based in Portland, Grief Watch publishes, books, videotapes, audiotapes and other helpful resources aimed at persons who have suffered loss, used by families and professionals around the country. There are lots of great articles and wisdom available on their web site.
Considering Options &
Choosing Options, Honoring Options (COHO) (Medford)
A coalition of individuals and organizations whose mission is to encourage advance care planning and meaningful conversations centered upon personal choices for end-of-life care.
Oregon Health Decisions
Includes forms for Advance Directives for Health Care - "Your Life. Your Decisions"™ Whether you're 18 or 80, document your wishes today,so your loved ones don't have to make heart-wrenching decisions later.
Physician Orders for Life-Sustaining Treatment (POLST) Paradigm polst.org
The National POLST Paradigm is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and honored.
Oregon POLST Program
The POLST Paradigm began in Oregon in 1991. Medical ethics leaders recognized that patient wishes for life-sustaining treatments were not being honored consistently despite the availability of advance directives.
An Advance Directive for Health Care Based on Personal Values
Another option to explore your wishes and expand upon and be included with the Oregon Advance Directive.
Southern Oregon Friends of Hospice
Its mission is to both raise awareness and provide financial support for end of life care programs through collaboration with our Rogue Valley community. Has links to all the Hospice providers in the Rogue Valley.
Compassion & Choices - Oregon
A resource for those interested in the Oregon Death with Dignity Act. Provides EOL info, Advance planning and EOl consultation.
Oregon Hospice Resources -
A statewide public benefit organization helping to ensure Oregonians have access to high quality hospice and palliative care as they near the end of life. Services include public and professional education, advocacy, research, consultation, accreditation and leadership.
Five Wishes is used in all 50 states and in countries around the world. It meets the legal
requirements for an advance directive in 42 states. In the other eight states your completed Five Wishes can be attached to your state’s required form. Five Wishes can be used in any part of the world as a helpful guide and documentation of one’s wishes.
My Gift of Grace
My Gift of Grace is a conversation game tfor living and dying well that helps improve end of life conversations for staff, patients, families, and communities.
Get Your Shit Together http://getyourshittogether.org/
In 2009 Chanel’s young husband was killed in an accident. She says, “In the following hours,
weeks, and months I was shocked by the number of things we had left disorganized or ignored.” Her web site offers: “Critical documents you can spend a fraction of the time doing now.”
A fee for service ($75/year) secure, digital archive of everything your loved ones will need should something happen to you. Many free resources including DIY info for many planning categories.
Important health, legal, and end-of-life planning forms and information for people living in Oregon.
Who Gets Grandma’s Yellow Pie Plate?
A site that offers research-based educational resources to help individuals make more informed decisions about passing on or transferring personal possessions, a task facing individuals at end of life.
American Academy of Hospice and Palliative Medicine
Provides position statements intended to raise awareness and express the views of the Academy on important issues related to hospice and palliative medicine.
Cambia Health Solutions cambiahealth.com
A health care system which serves as a catalyst to transform health care, creating a person-focused and economically sustainable health care system.
Center to Advance Palliative Care
A hub for providers, payers and policy makers in support of palliative care innovation, development and growth.
Donate Life Northwest
Registers and educates residents of Oregon and Southwest Washington about organ, eye and tissue donation. We also provide a supportive community for all those whose lives have been touched by donation.
Include information about the Right to Try movement which is a bill that would allow makers of experimental drugs to make them available to Californians with life-threatening diseases.
Callanish: retreats, programs, film
Callanish creates a healing space for people
who have been irrevocably changed by cancer.
It inspires those who are living with and/or dying from cancer to reconnect with the essentials of life—and in doing so, to feel soothed, strengthened and restored. At the heart of Callanish is a weeklong retreat that provides a gentle catalyst for revitalizing the spirit. After more than 20 years and over 75 retreats, Callanish has evolved into a far-reaching community deeply rooted in the fundamentals of what it means to be human.