NCCN Guidelines for Patients® | Caring for Adolescents and Young Adults - page 96

NCCN Guidelines for Patients
: Caring for Adolescents and Young Adults
Version 2013
Part 9: Thinking about the unthinkable
This doesn’t mean that you have to choose not to attempt
resuscitation, of course. The advance directive should
reflect your wishes—not what you think your parents
or partner would want. And keep in mind that the
advance directive isn’t written in stone. If your thoughts
on feeding tubes or respirators change, you can always
make changes.
Your advance directive should also identify your health
care proxy, a person who is authorized to make decisions
on your behalf it you can’t communicate. This person
may one day have to make some very tough decisions,
so you should think carefully when selecting your proxy.
Pick someone who knows you well but who will be able
to follow your wishes when the time comes, even if your
wishes don’t mesh with that person’s personal beliefs.
Researchers from the National Institutes of Health recently
developed the Voicing My Choices Planning Guide for
Adolescents and Young Adults (
org/voicing-my-choices.php), a simple but incredibly
complete template for laying out your end-of-life wishes. In
addition to forms for selecting your health care proxy and
your instructions regarding life support and resuscitation,
Voicing My Choices includes sections on how you like to
be comforted, your spiritual beliefs, and even what you
want done after you have died.
In addition to making plans about your care, organizing
your personal and financial affairs can reduce some of
the burden on family and friends when you are gone and
leave you free to focus on other things in the time you
have left.
Clear up any insurance questions. Find out what
which end-of-life services your provider will
cover and clarify any limitations in the coverage
(such as a cap on the number of visits by
a nurse or health aide).
Organize your financial records (bank accounts,
insurance policies, mortgages, etc.) and make sure
your family knows where everything is. The National
Cancer Institute’s booklet, Coping with Advanced
advancedcancer.pdf), includes a detailed worksheet
that can help.
If you wish to have a funeral or memorial service,
consider making the arrangements in advance.
Making the most of your time
Realizing that your time on this earth is limited can be a
strange combination of devastating and liberating. Some
patients with incurable cancer note that the loss of the
future can give back the present, freeing you to focus on
relationships and activities that bring you the most joy,
fulfillment, and satisfaction. As one young breast cancer
patient put it, “Instant gratification? For me, there’s no
other kind.”
Use the times when you are feeling relatively well to
pursue the hopes and dreams that are still within your
grasp, to enjoy the company of the people you love, and
to build positive memories that will last when you are
gone. Some people use this time to build a sort of legacy,
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