What else do I need to know? - Frequently Asked Questions
1. What is Advance Care Planning?
Advance Care Planning is a thoughtful process to plan for future
healthcare choices, involving personal reflection and discussions
about medical treatment preferences. Along with these important
discussions, advance care planning involves putting your decisions
for healthcare in a written document called an advance
directive.
2. Why should I have an Advance Care
Plan?
By establishing an Advance Care Plan while you are well, you can
make sure that your wishes are honored late, should you become
unable to speak for yourself.
3. Why should I choose the Project GRACE Advance
Directive (Living Will)?
The Project GRACE Advance Directive is used by many hospital
systems across the country. It is acceptable to doctors and
easily understood by the public. Copies can be obtained, free
of charge by printing the directive from this
website or by contacting our office at
727-536-7364.
4. Does an Advance Care Plan encourage my
death?
NO. You are not signing an agreement that says
that you wish to die. You are making a choice for the future, about
medical treatment (artificial ventilation and/or nutrition,
surgery, antibiotics) when there is little or no hope for
recovery.
The Advance Care Plan becomes active
ONLY when you cannot tell your doctor
and loved ones what your choices are about medical treatments.
5. How can I make sure that my wishes are
followed?
Your Advance Care Plan should be part of your medical record. It
should be readily available to doctors and other healthcare
providers. They are obligated to follow your instructions. It is
important to include your Healthcare Surrogate(s) in your planning,
keeping them informed of your wishes, and providing them with a
copy of your Advance Directive.
6. I have several doctors. With whom should I discuss my
Advance Directive (Living Will)?
Dependent upon your illnesses, any or all of your doctors may be
involved in your care if you reach a condition in which your
Advance Directive is needed. Treatment recommendations and
decisions are often made through agreement of several doctors. You
should discuss and give copies of your Advance Directive to all of
your physicians, especially your primary care physician.
7. How should I choose my Healthcare
Surrogate?
This is a very important question. Your Healthcare Surrogate will
speak for you when you are unable to speak for yourself. You must
choose your Healthcare Surrogate carefully, and then share your
choices for medical treatment near the end of life with that
person. You want to be sure that your Healthcare Surrogate is
easily accessible by the medical team, and is a person that you can
count on to honor and communicate your personal wishes. Most people
choose the individual(s) they know best, such as their closest
relative(s) or friend(s). Some individuals prefer a family member
or friend because of their knowledge of medical situations. In such
circumstances, it is best to explain this choice to your nearest
relative, who might expect to act as your surrogate. This will help
to avoid conflict or misunderstanding later.
8. Are there conditions when my expressed wishes may not
be honored?
Yes. Even though your Advance Directive is a legal document, your
physicians and surrogates are ultimately responsible for
interpreting and carrying out your choices for you when you are no
longer able to communicate your choices. These decisions are
sometimes difficult and require judgment. When there is a question,
they must serve you according to the spirit of your instructions.
It is the legal responsibility of your physicians and healthcare
providers to honor the choices of the dying for end-of-life care.
The clearer your Advance Directive is, and the better you
communicate its contents to your physicians and surrogates, the
more likely they are to be able to follow your exact wishes. For
example, when a condition involves some but very little chance of
recovery, or when a treatment involves significant risk or added
suffering with low potential for benefit, your surrogate will be
required to make value judgments on your behalf after full medical
advice from your physicians.
9. Why have doctors had difficulty following Advance
Directives?
Many living wills ask doctors not to perform "heroic measures" or
"use artificial means of treatment." These and other vague
statements, such as "terminal condition" or "if death is expected",
have no clear meaning. Some documents ask doctors to certify that
there is no hope for improvement. These terms and phrases prompt
doctors to do more medical procedures, not less. A clearly written
Advance Care Plan and personal discussion with your doctor and
family is your best assurance that your wishes will be
followed.
10. Why would anyone want "No CPR?" Isn't that a form of
suicide?
No. The success rate of cardiopulmonary resuscitation (CPR) is much
less than people think.
For a dying individual, cardiac arrest with no attempt at
resuscitation (which is typically painless, like going to sleep or
passing out), is usually the most merciful method of dying. By
saying that one does not want CPR when death is
near, one says that, "when my time comes I do not want to
prevent the natural way of dying."
Many patients dying from cancer, terminal heart or lung disease, or
with Alzheimer's disease, or individuals who are healthy but have
reached an advanced age, may not want doctors to prevent them from
dying a natural, peaceful death. Their choices may include a "Do
Not Attempt Resuscitation" (DNAR) order.
11. If I have an Advance Directive, does that
automatically mean that I won't be resuscitated if my heart and
lungs stop?
NO. Medical personnel will ALWAYS attempt resuscitation
UNLESS you have been identified as being in a condition that YOU
have listed in your Advance Directive that you have chosen not to
be resuscitated for.
Decisions regarding CPR should always be discussed with
your physician. If you do not want CPR, you should ask your doctor
for a "Do Not Attempt Resuscitation" (DNAR) order to be entered in
your hospital medical record. Currently, in the State of Florida, a
separate form (DH Form 1896) must be signed by you (or your health
care surrogate, if you are unable to sign), and by your physician.
That form must be with you at all times to ensure that CPR will not
be performed in a non-hospital situation.
12. Where can I get the Florida Do Not Resuscitate Order
Form (DH Form 1896)?
Your physician should be able to provide you with the
Form, or you may contact Project GRACE to obtain one. Remember, you
must also have your doctor sign the Form to prevent unwanted CPR
outside of the hospital.
13. If something happens to me while I am away from home,
how can I be sure that my choices for medical care are
honored?
Currently, the best assurance that your wishes will be honored is
to provide a copy of your Advance Directive to your Healthcare
Surrogate, close family members, your attorney, any doctors that
participate in your medical care (including doctors outside the
State of Florida), and the hospital of choice closest to where you
live. If you spend some time in other States, you should be sure
your Advance Directive is recognized as legal in those States (most
States accept the Project GRACE document). You should carry a copy
of your Advance Directive with you when traveling.
14. What if I am really sick, but there is a chance that
I can "beat it?"
Advance Directives come into use ONLY
under certain conditions when one reaches a stage in life where you
can no longer think and communicate and when it is clear that you
have little or no chance of recovery. Advance Directives do not
apply when there is a chance for recovery.
In the State of Florida, the patient's physician must determine the patient's condition cannot be made any better before life-prolonging procedures may be withheld or withdrawn. Your requests to withhold treatments in your Advance Directive do not apply when there is a reasonable chance of cure or improvement that allows you to recover to a meaningful life. Doctors are trained to fight illness and death and tend to err on the side of continuing aggressive, curative efforts until they find out that you have no chance of recovery.
15. Why would I not want a feeding tube with artificial
feedings at the end-of-life when I can no longer eat? Wouldn't I
"starve to death"?
A feeding tube is a small tube placed through the nose and
into the stomach to deliver artificial liquid feedings. A more
permanent form of feeding tube that is placed through the wall of
the abdomen and the stomach is called a gastric tube. Putting in a
gastric tube is a surgical procedure. In most cases, people stop
eating and drinking because the dying body no longer has a need to
do so. People who are permanently unconscious, in a vegetative
state, or who have end-stage dementia (permanent, severe confusion)
lose all feeling of thirst or hunger. There is no medical evidence
that not using a feeding tube with artificial feedings leads to a
more painful death. In fact, the research says just the opposite.
Artificial feedings through a tube may prolong dying and make it
more uncomfortable.
16. What about fluids given by the vein?
Many dying patients are totally unaware, and do not suffer
from anything. Fluids delivered through a small plastic tube
inserted into a vein consist of sterile water and sugar. When the
body prepares itself to die, intravenous fluids are not necessary
and may cause discomfort. In patients who have any awareness, sips
of water or ice chips, lubricated lips and good mouth care are
enough to relieve a dry mouth and to provide comfort.
17. When should I prepare an Advance
Directive?
The sooner, the better for all persons over the
age of 18 years. No one can know when an accident or disease may
make one unable to state his or her personal choices.
18. What if I change my mind?
Advance Directives are never final until capacity to make decisions
is lost. Everyone has the right to change their document at any
time. Simply complete a new document and provide your doctors with
the updated version. Also, you should contact ALL persons
previously notified of your wishes and provide them with your
revised copy of the Advance Directive. To avoid confusion, it is
wise to destroy out-dated documents.
19. Do I need to have my document notarized or witnessed
by a lawyer?
If you are a Florida resident, it is not necessary to notarize your
Advance Directive or have a lawyer involved to complete the
document. It is required that the document signatures be witnessed
by any two competent adults, other than your designated
surrogate(s) and one witness should not be your spouse or a blood
relative. It is best to have someone witness the document who is
neither your heir, your family member nor your healthcare
provider.
20. How often should I revise my Advance
Directive?
Advances in medical science happen all the time and the laws about
Advance Directives can change within the state and across the
nation. It is wise to discuss your plan with your primary doctor
every few years or whenever you have questions.
21. What do I do with my Advance Directive after I
complete the form?
After your Advance Directive is completed, make certain you have
signed and dated the form. Always keep your original document along
with your other important legal papers. Provide your hospital with
a copy each and every time you are admitted to the hospital. In
addition, we recommend that you provide your regular physician or
physician specialist with a copy. To be safe, you should provide a
copy to any doctor who participates in your care. You should
discuss your choices and goals for care at end-of-life in detail
with your designated health care surrogate(s) as well as provide
them with a copy of your Advance Directive.
22. What should my family know?
Family members may wish to have more information about making decisions for end-of-life medical care. They may contact Project GRACE for information.
23. Should I tell others about my Advance
Directive?
If you believe that having an Advance Directive is important and
beneficial to you, we encourage you to discuss it openly with
others and recommend they discuss their choices with their
physician as well as complete an Advance Directive of their own.
You may wish to refer others to Project GRACE for further
information.
24. What is the difference between a
Living Will and a legal will?
A Living Will should not be confused with a person's legal
will, which disposes of personal property on or after his or her
death.