Topics, Organizations, and Websites
Terms Used in the Caregiving and End-of-Life Profession
- QOL: Quality of Life
- ADL: Activities of daily life
- DNR: Do not Resuscitate Order
The National Hospice and Palliative Care Organization – nhpco.org
Health care power of attorney is a document that designates another person to make medical decisions on his or her behalf. This decision making power is limited to when the individual is unable to make decisions on their own.
Durable power of attorney is a document that gives another person the authority to make decisions on their behalf beyond medical care, allowing access to financial accounts and other matters of concern.
Do Not Resuscitate (DNR) is also known as “no code” or “allow natural death.” It is a legal order written either in the hospital or on a legal form that lets Emergency Medical Services (EMR) know whether or not the patient wants cardiopulmonary resuscitation (CPR) and other life sustaining measures to be used. Forms can be downloaded on-line by state of residence.
Physician Order for Life-Sustaining Treatment (POLST) is similar to a DNR but may provide other information about end-of-life wishes. In some states this form is called POST, MOLST or MOST. POLST is generally a one page, two-sided uniquely identifiable form (bright pink). This form gives seriously-ill patients more control over their end-of-life care, including medical treatment and extraordinary measures (such as a ventilator or feeding tube) and CPR. This form is a set of medical orders appropriate for patients with serious illnesses or frailty whose health care professionals generally estimate a year or less of life. An example of this form can be found at: uclahealth.org/ethics-center/Workfiles/POLST-Form-English.pdf
Advanced Health Care Directive is also known as a personal directive, advance directive, medical directive, or an advance decision. It is a legal document in which an individual specifies what actions should be taken regarding health care, and who they want to make decisions for them if they are no longer able to make these decisions due to illness or incapacity. The document communicates end-of-life wishes. These forms can be downloaded from the Internet according to your state. To download the advance Health Care Directive Form provided by the state of California, go to: ag.ca.gov/consumers/pdf/ProbateCodeAdvancedHealthCareDirectiveForm-fillable.pdf
Prepare for Your Care Directives
prepareforyourcare.org/welcome Free, easy to read advanced directives for your state of residence.
prepareforyourcare.org/advance-directive Many people have found these materials to be helpful. They are at a fifth grade reading level and include illustrations. Reviewing this guide and answering the questions will help you gain clarity about your values. It is recommended to do this prior to filling out an advanced directive.
prepareforyourcare.org/questions Prepare Question Guide is designed to “help you make medical decisions for yourself and others, talk with your doctors, and get the medical care that is right for you.” The guide is available on-line or can be printed.
Dementia and Alzheimer’s Disease Advance Directives
dementia-directive.org Directives for cases of mild, moderate or severe dementia.
Alzheimer’s and Dementia Mental Health Advance Directive developed by End of Life Washington, Lisa Brodoff, Esq. and others. endoflifewa.org/alzheimers-diseasedementia-advance-directive/
“This advance planning document allows people coping with Alzheimer’s disease and dementia to document their wishes about the inevitable challenges related to living with these illnesses. Even if this directive is not legal where you live, you can still use it to document your wishes and provide a guide for your family, health care providers, long-term care providers, and others.”
Compassion and Choices:
Care and Choice at the End of Life
Dementia Provision (Advance Directive Addendum) The language in their form can be added to any advance directive.
“Advises medical providers, healthcare proxies, caregivers, and loved ones of the wishes of a patient with Alzheimer’s Disease or some other form of advanced dementia. Once completed and signed, the addendum should be kept with the advance directive.”
Last Will and Testament
Last Will and Testament informs others regarding an individual’s decisions about what to do with their assets, personal property, and real estate when he or she dies. A last will also assigns an executor (someone known and trusted) to fulfill these orders, and a person (guardian) to care for any children under the age of 18. This document often requires the signature of two witnesses to be valid. Your Last Will and Testament may be filed in your local probate or surrogate’s court for safekeeping.
A Living Will includes similar directives regarding health care and end-of-life wishes, and may also address the custody of children, disposal of assets, and other areas of concern.
This document and Advance Health Care Directives go into effect when the person is no longer capable of making his or her own decisions.
The Five Wishes is a living will that takes into account the individual’s personal, emotional, medical, and spiritual preferences and wishes. It specifies who they want to make health care decisions for them if they are unable to make them. Whereas an Advanced Health Care Directive needs to be notarized, the Five Wishes living will is currently (2019) considered a legal document if signed by two witnesses.
Spiritual Guide/Planning Document. You can create a living will that specifies the music, meditations, prayers, and affirmations you want used during your last days of life. Include details for your memorial service or celebration of life such as location, music, colors, flowers, and objects. Also helpful is to list the people to contact and messages to be given when you die.
finalpassages.org Final Passages offers home funeral guidance.
"The nation’s first non-profit, educational institute and resource center dedicated to conscious dying, and a holistic, green, compassionate and dignified alternative to conventional funeral and after-death practices.”
Dailycaring.com offers guidance regarding many areas of interest and concern for caregivers, including helpful and practical hands-on advice.
Caregiver.com provides information, support and guidance for family and professional caregivers. Their products and services “are developed for caregivers, about caregivers and by caregivers.”
Care.com helps people find caregivers, caregivers to find jobs, and offers support in understanding state and local domestic worker requirements. For a fee, their service, HomePay, handles the paper-work to establish state and federal tax IDs for employers, calculates gross and net pay, and runs payroll automatically. Their service also provides access to background checks, contracts, and information about worker’s compensation.
sevenponds.com Seven Ponds –Embracing the End-of-Life Experi-ence. “Before Death Information Library strives to provide readers with everything they need to know to embrace a coming death with intelligence, love, and the power to heal.”
theconversationproject.org The Conversation Project helps people talk about their wishes for end-of-life care.
med.stanford.edu/letter.html In The Stanford Letter Project patients write letters to their doctors about what matters to them at the end-of-life.
willing.com the Willing site helps people easily create a will online.
storycorps.org Offers tools to collect, share, and preserve people’s stories.
elanazaiman.com The Forever Letter is a book designed to help you write legacy letters to those you love.
Death Positive Movement
The following websites can be considered part of a ‘death positive movement’ that fosters platforms to stimulate thought and discussion about death and dying.
naturaldeathcareinitiative.org NDI is a collective of dedicated end-of-life educators and practitioners based in Santa Cruz, California. NDI offers support for education and care legacy projects, conscious transition from life to death, home funerals and natural burials.
fullcirclelivingdyingcollective.com Created to serve and educate the living in understanding options and rights in death & dying. They empower families and communities to bring back the tradition of home death care through guidance and local resources.
talkdeath.com/death-positive-movement "encourages positive and constructive conversations around death and dying."
deathoverdinner.org The Death Over Dinner site helps you host a conversation regarding the end of life by means of engaging dinner gatherings.
deathcafe.com Death Café was founded in England by Jon Underwood in 2011. Death Cafés have been held in fifty-one countries to date. At Death Cafés, people drink tea, eat cake and discuss death. The aim is to increase awareness of death, discuss why people fear death, and how to live while awaiting it. Participants are encouraged to remember what truly matters and to make the most of their lives.
Cards to Assist in End-of-life Conversations
gowish.org Go Wish: A Tool for End-of-Life Conversations
This card game was designed to help people reflect on the dying process, prioritize their values, and help them talk about what is important to them. These cards are especially good for individual use, or for two or more people in an intimate setting.
commonpractice.com/hello The Hello Game is a conversation card game that provides an “easy, non-threatening way” to begin a conversation with family and friends about what matters most to you.
Equipment and Supplies
Hospital bed, walker, wheelchair, Hoyer lift, commode, urinal, disposable pull-up briefs, adult diapers, bed pads, wipes, latex gloves, palliative care medication (for pain and confusion), salves for rashes, allergies, and so forth, may be supplied by or through your local hospice organization.
If possible, use oils that are organically grown or sustainably harvested.
On-line: Elizabeth Van Buren, Eden Botanicals, Floracopeia, Ananda Apothecary, Mountain Rose Herbs, NOW, Garden of Life
In stores: Veriditas/Pranarom, Primavera, Amrita
Training to be an End-of-life Caregiver, Death Doula or Midwife to the Dying
inelda.org INELDA – International End of Life Doula Association
finalpassages.org Final Passages founder Jerrigrace Lyons created and developed a 3-tiered certificate program in the field of conscious dying, end-of-life midwifery, home funeral guidance and green burial called, “Honoring Life’s Final Passage.”
qualityoflifecare.com Quality of Life Care founder Deanna Cochran, RN is an End of Life Doula, Mentor and Trainer who offers an End of Life Doula Certificate Program.
Doorwayintolight.org Doorway Into Light founder Reverend Bodhi Be offers an annual web-based Death Doula Certificate Program, established in 2017. A five day intensive in Maui, Hawaii is a prerequisite for the certificate program.
Other Training and Learning Opportunities
Many hospice organizations offer training programs for their volunteers and others in the community.
Seminars and courses are available for end-of-life care, and some universities offer training to be a death doula. One such program is Baylor University Medical Center’s Doula Program: Comfort and Caring at the End-of-life.
finalpassages.org Final Passages is referenced above under Home Funerals.
NaturalBurialCompany.com sells biodegradable coffins, caskets, urns and natural funeral goods throughout the US and into Canada
beatree.com Be a Tree is based on the forthcoming book, Be a Tree, the Natural Burial Guide for Turning Yourself into a Forest by C.A. Beal
As stated on their website:
“At the end of your life, you can give life to others. Organ, eye or tissue donation is the process of giving an organ (or a part of an organ), eye, or tissue at the time of the donor’s death, for the purpose of transplantation to another person.”
organdonor.gov U.S. Government Information on Organ Donation and Transplantation
As stated on their website:
“You can sign up on-line or in-person at your local motor vehicle department. Registering online takes just a few minutes. All you need is some identification information and your driver’s license or photo ID number. Be sure to let your family know you have registered, so they can support your wishes.”
Donating a Body for Medical Research
Many medical schools have programs where they accept bodies for research and teaching purposes.
Brain Donation for Medical Research
An increasing number of people are arranging for their brain to be available for research after their death. The Brain Support Network provides information and facilitates this process. brainsupportnetwork.org
At present (2019), brain donation is the only way to confirm the diagnosis of a neurological disease. The following are among the neurological disorders that will benefit from having brain tissue available for research:
Parkinson’s Disease (PD)
Parkinson’s Disease Dementia
Atypical Parkinsonism Disorders
- Corticobasal Degeneration (CBD)
- Lewy Body Dementia (LBD)
- Multiple System Atrophy (MSA)
- Progressive Supranuclear Palsy (PSP)
On Death and Dying by Dr. Elisabeth Kübler-Ross, The Macmillan Company, 1969. Some later editions added the subtitle What the Dying Have to Teach Doctors, Nurses, Clergy, and Their Own Families.
Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter, M.D, Avery, An imprint of Penguin Random House, 2017.
Who Dies? An Investigation of Conscious Living and Conscious Dying by Stephen Levine and Ondrea Levine, Anchor Books, A Division of Random House, Inc., New York, 1982, 1989.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying by Maggie Callanan and Patricia Kelley, Simon & Shuster, 2012.
Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death by Joan Halifax, Shambala, Boston, 2009.
A Mother's Final Gift: How One Woman's Courageous Dying Transformed Her Family by Joyce and Barry Vissell, Ramira Publishing 2013
Precious Final Hours, Caring For the Person in Their Final Hours of Life by Cyndie Neotti. Precious Moments Incorporated, 2015. Order online direct from Cyndie@PreciousFinalHours.com
Creating a Rich and Meaningful Life in Long-Term Care by Mary Ann Konarzewski, Apocryphile Press, Berkeley, CA 2017.
The Five Invitations: Discovering What Death Can Teach Us About Living Fully by Frank Ostaseski, Foreword by Rachel Naomi Remen, M.D., Flatiron Books, 2017.
Being Mortal: Medicine and What Matters in the End by Dr. Atul Gawande, Metropolitan Books, New York, 2014.
The American Way of Death Revisited by Jessica Mitford, Knopf, 1998.
Graceful Exits: How Great Beings Die by Shushila Blackman, Shambala, 2005.
Alive Inside demonstrates the power of music to bring elders (many with dementia) back to life. The documentary shows how music helped elders recover long-term memories. Hearing their favorite music helped them remember happy times and rekindled feelings of joy. “Music is part of the soul,” one of the elders interviewed said.
Extremis is a short documentary film based on the book Extreme Measures: Finding a Better Path to the End of Life by Jessica Nutik Zitter, M.D. The documentary follows doctors, families and patients in an ICU (Intensive Care Unit) as they make end-of-life decisions. It shows the “tension between saving life at all cost and creating comfort, calm and peace as illness or aging takes its course.” The film and book stress the importance of making decisions before a life-threatening situation forces decisions to be made hurriedly.
The Last Chapter – End of Life Decisions – Living before Leaving (West Virginia Public Broadcasting) Individuals with end-stage ailments reflect on how they want to live their final days and weeks.
In The Parlor and A Family Undertaking are documentaries that provide information about the practicalities of having a home funeral, as well as the emotional, spiritual and financial benefits of doing so.
Grief Walker is a documentary film by Tim Wilson featuring the wisdom of shaman Stephen Jenkinson. “Grief is not a feeling; grief is a skill. And the twin of grief as a skill of life is the skill of being able to praise, or love life.”
Living While Dying by Cathy Zheutlin is a 45 minute film about “embracing life and becoming more comfortable planning for the end of it.” This thought provoking film presents experiences and perspectives to stimulate viewers to reflect on the dying process and what might happen after one dies. livingwhiledying.org