NCCN Guidelines for Patients® | Caring for Adolescents and Young Adults - page 95

NCCN Guidelines for Patients
: Caring for Adolescents and Young Adults
Version 2013
Part 9: Thinking about the unthinkable
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Most people with cancer go into treatment determined to
“beat this thing.” And lots of them do—at any given time
there are more than 13 million cancer survivors in the
U.S., alone.
But sometimes beating cancer isn’t an option. When
cancer is diagnosed very late or keeps progressing
despite all treatment efforts, it may be time to set some
new goals. If it becomes clear that cure is not possible,
treatment becomes about making the most of your time
and assuring that you can meet death on your own terms.
Advance care planning
Advance care planning is all about making sure that
your wishes are understood and respected and that you
receive the best possible care at the end of your life.
Research has shown that when patients with incurable
cancer set up an advance care plan early on, they feel
less stressed and better able to cope with their condition.
The advance care planning process starts with an open
and honest discussion with your physician about your
prognosis—what you may experience in the coming
months—and the medications or therapies that may give
you the best quality of life. This discussion should include
your partner and/or other family members who love you
and are likely to be with you at the end. It’s important that
everyone understand the goals of your care and your
personal wishes about what should—and should not—
be done.
Once you’ve made these decisions, they will be
incorporated into an advance directive—a legal document
that lays out what you want done if you aren’t able to tell
the doctors yourself. Doctors are required to follow the
care instructions in an advance directive when you are
too ill to give instructions about your care. The advance
directive will include information on how much you want
your doctors to do if your heart or lungs stop working or
if you are no longer able to eat. Many advance directives
include DNAR (
esuscitation) or DNI (
ntubate) orders, which specifically forbid medical
providers from reviving you with CPR (
esuscitation) or hooking you up to a breathing machine.
It will be important to keep your advance directive on
hand because in the absence of these papers, health
care professionals are legally required to do everything
possible to keep your heart beating and lungs breathing.
Make sure everyone on your team—and in your family—
knows about your advance directive and its contents.
Willing yourself to live often takes
sheer guts and a willingness to ‘do what
it takes.’ Living without being afraid
to die takes being at peace with where
you are in life . . . It gave me a great
feeling of peace to be ready to die.
It finally allowed me to ‘live’ in
some ways.”
Patti, diagnosed with
breast cancer at 24, died at 29
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