An Advance Directive is a document that is
meant to give health care professionals an
understanding of your medical preferences if you
cannot speak for yourself. It tells them
‘in advance’ of needing treatment what you would
most likely want to have happen. Many
people may know them as "Living Wills," but a
Living Will may only address your treatment
options and not allow you to appoint someone to
speak for you if you are unable to communicate.
Another document that is useful is called a
"Durable Power of Attorney for Health Care" and
it allows a person to designate someone to speak
for them if they are unable to speak for
themselves. The person is sometimes called
a ‘surrogate’ or a ‘proxy’ decision maker.
Many Advance Directive documents combine the
'living will' portion with a portion that is a
Durable Power of Attorney for Health Care.
Here is a link to the VA's Advance Directive,
which is a fine version of the combined
document:
http://www4.va.gov/vaforms/medical/pdf/vha-10-0137-fill.pdf
Only about 20 percent of Americans have an
Advance Directive, but I believe everyone could use
one. Some of the most famous bioethics cases
arose from situations involving young women that had
no Advance Directive (Karen Ann Quinlan, Nancy
Cruzan, Terry Schiavo). These women were young
and had no intention of finding themselves in
persistent vegetative states. Keep in mind,
it's not just a persistent vegetative state that may
make speaking for yourself impossible. There
are a whole host of reasons why someone might be
receiving medical treatment and they would be unable
to speak, including many surgical situations.
Advance Directives have two purposes. One is to
let health professionals know what kinds of
treatments you would find acceptable. Many
people find the thought of being placed on a
mechanical ventilator for long-term existence
unacceptable. Others may find the idea of
living with advanced dementia, dependent on a
surgically placed feeding tube, something they would
like to prevent. Some want every possible
treatment to be attempted, regardless of the
outcome. Often people decide whether they
would like a medical team to attempt resuscitation
(CPR) or to allow for a natural death.
The other critically important thing an Advance
Directive usually does is to appoint someone
specific to make medical decisions on your behalf if
you are unable to make them. It's vital to
speak with that person about your values and
expectations since it is a serious responsibility.
All too often in clinical settings, health
professionals ask the person most likely to assist
with decision-making what they think the person
requiring treatment might want and they admit they
have no idea. The person named in the Advance
Directive is meant to make decisions that are
closest to what that person would want if they could
speak for themselves. It's not acceptable for
people to direct the health care team to take
actions based on their own values since those values
may differ from those of the person in need.
Just as unacceptable would be for the health care
team to decide what is best without knowing what the
ill person would want. This is the area where
there seems to be a general lack of understanding.
We are not deciding what we think is best for the
person; we are attempting to imagine what that
person really would want done. What is “best”
is often very subjective in medical situations.
In emergencies, the default option is to do
everything to save the person's life. But
there are situations in which doing that would not
necessarily be in the best interest of the person
experiencing the emergency situation. For
instance, an elderly person had requested hospice
care and was nearing the end of their life.
The relative living with them panicked and instead
of calling their hospice nurse, called 911. The
elderly person was unsuccessfully resuscitated,
which caused pain from having their ribs broken
during the chest compressions and unnecessary stress
at the end of their life. They did not
survive. They did have an Advance Directive,
but their relative did not follow their wishes to
die a natural death. It is very important to
choose someone you think will commit to following
your desires.
No one plans on getting into an auto accident,
yet most adults have been in at least one.
With about 6 million auto accidents annually in the
U.S.
and hundreds of thousands of injuries, it would seem
reasonable for anyone that has a driver's license to
be required to create an Advance Directive. We
all get to decide if we want to be organ donors at
the DMV; why not also decide to designate someone to
speak for us if we are unable to due to an accident?
Creating an Advance Directive may be very
important for anyone's future; yet even more
important are the conversations you have with family
and friends regarding your wishes. That way
you will know that several people are able to
communicate your wishes. It may not seem like
festive holiday banter, but discussions about these
issues are becoming more important than ever because
we live in an aging society.
Helping a loved one create an Advance Directive
if they’ve begun the process of dementia is still
possible in the early stages. Most people have
fluctuations of their mental abilities as they
succumb to dementia. You may recognize that
your loved one is more capable of speaking and
understanding conversations at certain times of day.
Discussing an Advance Directive when that person is
at their best time mentally would be ideal.
Discussing one’s Advance Directive with one’s
primary care physician is also vital to the process.
They can help to explain any misconceptions and
answer any questions about treatment.
Unfortunately in today’s medical world, primary care
physicians are often not the ones in the hospital at
your bedside if you’re admitted; it’s often a
hospitalist, a physician that specializes in
inpatient medical care. But having had the
conversation with your primary care physician is
essential for you to feel informed about your
choices. That way, if you are admitted unable
to communicate, your Advance Directive will have
been made with the consideration of information
provided by your primary care physician.
Next. You've created an Advance Directive; now what
do you do with it? It's important that it
doesn't end up in your safety-deposit box where it
will do no good if it's needed. Send a copy to
your primary care physician. If your medical
system is computerized, it will be scanned and added
to your chart. Keep a copy somewhere others
can easily find it. Give a copy to the person
you named as your 'durable power of attorney for
health care.' That way, they will know in advance
what your wishes are. It may stimulate even
more conversation that could be very helpful if your
surrogate is indeed called upon to assist a medical
team with decisions for treatment.
Personally, I think every person that drives a
car should write an Advance Directive every five
years. I recommend updating regularly because
technology changes, and some of your choices may
seem incorrect as technology makes life more
feasible despite disabilities. For example,
there are some people that might write into their
Advance Directive that they would rather not be kept
alive if they are unable to speak, but there is
research that makes the possibility of communicating
using only your thoughts and a special computer very
likely in the near future. Every person over
age 65 should be required to create an Advance
Directive since it is very likely at some point they
will be relying on health professionals to care for
them. Wouldn't you want your wishes known?
Marilyn Mitchell, RN, BSN, MAS has been an RN for
thirty years. She recently completed her
Master of Advanced Studies in Health Law from
UCSD/California Western School of Law. She
works for Kaiser Permanente in the Service Quality
Department.
Marilyn Mitchell
1106 Wotan Drive
Encinitas, CA 92024
760-230-1910
Marilyn.mitchell@cox.net
