In looking up words that describe American values, nearly all of the results showed
“independence” and “individualism” high on the list. Other common values mentioned
included “autonomy”, “freedom”/”liberty” and “choice”.
These are also values that are often mentioned during end-of-life planning. This is ironic
as death is still a topic that many Americans tend to avoid discussing.
As end of life doulas, we want our clients and our community to have access to
information about all things end of life related so that they can be in a more informed
and empowered position to make intentional choices about their care; ones that reflect
their personal values.
Additionally, being informed can also dispel untrue or just plain scary stories we may
have about the end of life process. Seasoned hospice nurse and educator Barbara
Karnes has even devoted a book to the concept of how “knowledge reduces fear” in
regards to an end of life journey.
We often hear that folks are not feeling supported by their medical teams in reaching
their end of life goals. There are also many unknowns that surface for people as they
navigate their way through planning for end-of-life, whether that end comes through an
organic disease process or a more assertive approach like voluntarily stopping eating
and drinking to avoid an inevitable and unwanted decline. This is understandable, as we
have never died before and don’t know what we don’t know!
So, here are some end-of-life concepts, tools and resources that we like to educate
folks on to support the spirit of autonomy and empowerment. They may be things that
folks don’t even know to ask about!
Engaging the services of an end of life doula
Doulas meet folks where they are - whether healthy and planning, newly diagnosed, or
further along in a disease process. Doulas provide holistic non-medical support,
resources and comfort to help people process and plan for their eventual end. Learn
more about doulas here: National End of Life Doula Alliance
Hospice and palliative care
Palliative care is comfort care and treatment for a person dealing with a serious illness.
Hospice care is comfort care without treatment for a person with a prognosis of six
months or less to live. These services are widely underutilized and are most helpful
when engaged with early. Learn more here: Caringinfo.org
Voluntarily Stopping Eating and Drinking (or VSED)
This historically utilized strategy for ending one’s life is available to folks nationwide.
Although the concept sounds very simple, there are many things to consider and plan
for in advance, so working on this when time and energy are available is best. It
requires a team of support, which can include any loved ones as well as doctors and
hospice teams agreeable to participating in your care during this process. There is a
wealth of information available here: VSED Resources Northwest.com
Medical Aid in Dying (or MAID)
Individuals in Oregon and several other states who are terminally ill (with a prognosis of
six months or less to live) have the option to receive a prescription for a mix of
medications that will end their life. There are many reasons why some people choose to
end their lives on their own terms - decreased ability to enjoy life and loss of autonomy
being the top two. There are several qualifications that must be met and steps that must
be taken to use the law. For more information or to inquire about volunteer help with
this process, see End of Life Choices Oregon
Vigil Plan
A vigil is the time when family and friends hold space for and tend to a person who is
actively dying. A Vigil Plan is a document that outlines the specific ways a dying person
wants to be engaged with during this time, when they can no longer speak for
themselves. This is a flexible document that is created while a person still has energy
and is based on what normally brings them comfort. Vigil plans can help put a sense of
control back into the hands of the person who is dying, and the reassurance that their
wishes have been recorded can relieve anxiety.
Home Funerals & DIY Deathcare
Yes, you can have a home funeral! Families can care for their own dying person and
don’t have to hire a funeral director if they don’t want to, or can hire one just for certain
aspects of care. Additional information on these topics and more can be found at
Disposition options
Embalming is not required by law, nor is the use of a casket and concrete liner. Fire
cremation is not very environmentally friendly, and these days many people are
choosing greener options like natural organic reduction (also known as human
composting), green burials (simple burial in a pine box or cotton shroud) or aquamation
(where the body is dissolved in an alkaline water solution). Learn more here:
Comparing Green Funeral Options
Unique Memorial Services
If your family's end of life traditions don’t make your heart sing, you can work with a
celebrant or ceremonialist to create a unique celebration of life or memorial that reflects
your authentic self. You can even plan to have a living funeral before you die! See
Creative Ideas for a Memorial Service for some inspiration. Here is some information
on living funerals. https://www.care.com/c/what-is-a-living-funeral-celebration-of-life/
Whether we are in good health or not, making decisions for end-of-life care can be
challenging. Our brains are hardwired for survival, so naturally we tend to put off the fine
details of our end of life plan… often until we’re faced with decline. However, we will be
most able to have our chosen end of life experience if we plan for it. We honor and
praise the courage it takes to pursue the options, take the time to thoughtfully make a
plan, and communicate wishes to loved ones.
Contributed by Evening Star End-of-Life Doula Services, LLC