The Choice
is Yours...
Physicians are trained to preserve life as long as possible. With today's
advances in technology, people live longer and healthier lives. At the
same time, death can be postponed by the use of life-support machines,
potent drugs and artificial nutrition. The thought of surviving without
being conscious or without reasonable hope of being independent to care
for one's self is unpleasant - if not scary. Many of us would like to
say to our doctors and loved ones "If I get in a situation like
that I would rather be allowed a natural death!"
Please remember:
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All adults, 18 years of age and older, have the right
to say no to treatments that cause needless suffering and serve
only to make the dying process a longer one.
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All adults have the right to receive enough medicine
to control their pain and suffering when they approach death.
-
All adults have the right to control how they are
treated through the end of their lives.
1. What
is an Advance Care Plan (or Living Will)?
An Advance Care Plan is a legal document that allows you to make health
care choices for the future, should you become unable to make or communicate
decisions. Examples of loss of capacity to make decisions are confusion
or unconsciousness. Ad Advance Care Plan is especially important when
you are near to your death with no reasonable chance of a recovery or
if you become permanently incapacitated and have lost all good quality
of life. If you choose not to receive "curative" or life-prolonging
medical treatment for incurable conditions, the choices you make in
your Advance Care Plan will ONLY be followed when you have reached
the end stage of an illness or condition and the medical treatment would
only prolong your natural dying.
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 later, should you become unable to
speak for yourself. You can tell your doctors and loved ones that if
death cannot be avoided, you do not want to receive treatment that will
prolong your dying. Also, you can tell them, if you so desire, that
if you become totally unaware or helpless, with little or no chance
of ever getting better, you do not wish to receive treatments that prevent
you from dying.
3. Why should I choose
the Project GRACE Advance Care Plan?
Project GRACE is a non-profit foundation concerned with improving end-of-life
medical care for citizens. It consists of volunteer doctors, lawyers,
clergy, ethicists and senior citizens. Because many living wills are
written in a way that does not provide doctors with clear answers for
how a patient would wish to be treated, Project GRACE has worked long
and hard to produce an Advance Care Plan document that is acceptable
to doctors and easily understood by the public. It addresses true medical
situations and treatment choices and allows individuals to clearly express
their choices for medical treatment at the end-of-life.
4. Why
does the Project GRACE Advance Care Plan document identify four
conditions
for choices of care?
Physicians with extensive experience in end of life care have identified
these four conditions as the most common situations in which the continuation
of treatments that attempt to prolong life are of no benefit and often
prevent giving good comfort care. If you choose "No", it means
you have chosen to let death take its course naturally without medical
interference.
5. Why is there a place
for "Other Choices"?
Many individuals may wish to add details about their choices or even
exceptions to the choices provided in the Advance Care Plan document.
For example, Jehovah's Witnesses may ask that blood products be withheld
under all circumstances.
6. What if I already
have one of the conditions listed, such as total dependency or end
stage
disease?
Your Advance Care Plan document only applies when you lose capacity
to make health care decisions. You should discuss present treatment
choices with your physician and family. You may wish to use the conditions
and treatments listed in the Project GRACE Advance Care Plan document
as a reference for your discussions with your doctors about current
treatment choices. However, you should also prepare an Advance Care
Plan document for the possibility that you may lose capacity to make
other treatment decisions later.
7. 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.
8. 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 health care 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 provide them with a copy of your Advance Care Plan.
9. I have several doctors.
With whom should I discuss my Advance Care Plan document?
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 Care Plan
is needed. Treatment recommendations and decisions are often made through
agreement of several doctors. You should discuss and give copies of
your Advance Care Plan to all of your physicians, especially your primary
care physician.
10. 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 whom they know best, such as their
closest relative(s) or friend(s). Some individuals prefer a family member
or friend because fo 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.
11. Are there conditions
when my expressed wishes may not be honored?
Yes. Even though your Advance Care Plan 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 health care providers to honor the choices of the dying for end-of-life
care. The clearer your Advance Care Plan 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.
12. In the past, 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.
The Project GRACE Advance Care Plan attempts to avoid misinterpretation
by use of specific conditions and treatments.
Withholding ineffective medical technology and allowing
a natural death is a slowly evolving concept in American medical care
and is contrary to the way many doctors have trained and practiced for
many years. It is often possible to give "palliative", or
comfort care, at the same time as continuing treatments that are intended
to cure illness. A change from ineffective "curative" care
efforts to comfort or "palliative" care is sometimes best
for you. Recognition that you are unavoidably nearing death and switching
the emphasis of your care to "comfort" care, however, can
be the greatest givt that doctors and families can give to you. A clearly
written Advance Care Plan and personal discussion with your doctor and
family is your best assurance that your wishes will be followed.
13. 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 individuals over 60 years of age, the success
rate of CPR in hospitalized patients is 10 to 15%.
-
For victims of heart arrest outside a hospital, CPR
is successful only 3 to 5% of the time.
-
For those over age 85, the success rate is 3% for
patients who suffer a heart attack in a hospital and only 1 in 100
victims survive if the arrest occurs outside a hospital.
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.
14. If I have an Advance
Care Plan, 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 Care Plan that you have chosen not to be resuscitated
for.
Remember, Advance Directives regarding CPR in the Project
GRACE document only apply to the conditions listed AND only apply when
you can no longer express your decisions. All other decisions regarding
CPR should always be discussed by you with your physician. If you do
not want CPR, you should ask your doctor for a "Do Not Attempt
Rususcitation" (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.
15. 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.
16. If something happens
to me while I am away from home, how can I be sure that my choices
for
medical care are honored?
Project GRACE is working toward making sure that your wishes
are available to all Florida hospitals. In the future, we are hoping
to have a National Central Registry established that can easily be accessed
via computer, where your Advance Care Plan is available to health care
professionals around the world.
Currently, the best assurance that your wishes will be honored is to
provide a copy of your Advance Care Plan 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 Care Plan is recognized
as legal in those States (the majority but not all States accept the
Project GRACE document). You should carry a copy of your Advance Care
Plan Document with you when traveling.
17. What if I am really
sick, but there is a chance that I can "beat it?"
Advance Care Planning comes 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 death is around the
corner or you have an end-stage condition from which you have little
or no chance of recovery. Advance Care Planning does 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 withhold treatments
in your Advance Care Plan 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.
18. 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 stomack 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.
19. 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.
20. What is the difference
between a coma and a permanent vegetative state?"
A coma is deep sleep that lasts for a few days. Some patients ultimately
recover. Some patients only partially recover. If the individual does
not start to wake up in a few days it usually leads to death. At least
one report assessing the patient's brain damage is necessary from a
specialist in brain diseases to diagnose a coma.
A permanent vegetative state refers to a condition in
which unawareness lasts more than three months after cardiac arrest
or a stroke, or if it lasts more than one year after head trauma causing
brain damage. The chance of improvement is extremely low in ALL patients
with "permanent vegetative state". This is the reason
that the Project GRACE Advance Care Plan Document only applies to a
"Permanent Vegetative State".
Individuals in a permanent vegetative state are unaware
but appear to be awake at times and the eyes may open and move. They
may appear to smile or grimace. All of this movement is unconscious.
The patient does not speak and does not obey commands. An individual
may stay in a vegetative state for years without improvement. At least
one report assessing the patient's brain damage is necessary from a
specialist in brain diseases. Unless there is extreme damage to the
higher centers of the brain and the person can never wake up, the diagnosis
of permanent vegetative state is not made and the patient is not allowed
to die.
21. When should I prepare
an Advance Care Plan?
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.
22. What if I change
my mind?
Advance Care Plans are never final until capacity to made 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 Care
Plan. To avoid confusion, it is wise to destroy out-dated documents.
23. 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 Care Plan document 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 signatures who is neither your
heir, your family member nor your health care provider.
24. How often should
I revise my Advance Care Plan document?
Advances in medical science happen all the time, and the laws about
Advance Care Plans 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.
25. What do I do with
my Advance Care Plan document after I complete the form?
After your Advance Care Plan document 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 of your Advance Care Plan Document 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 Care Plan Document.
26. What should my family
know?
-
They must know your wishes regarding health care.
That is the only way they can be expected to honor your personal
choices near the end of life, and at the same time show their
respect and love for you.
-
Every life has an end, and health care has limits.
It is better to accept and prepare for a comfortable and peaceful
death, rather than be put through a nightmare of intensive care
with tubes and machines involved when medical treatment is of no
benefit.
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Medicine's mission is to add years and quality to
life for as long as possible. When cure of a fatal condition is
not possible, providing comfort and dignity to the dying is the
proper care.
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No Advance directive can be all-inclusive or long
enough to provide for all situations. Discussions about death and
end-of-life issues are often avoided in American culture. However,
an open, detailed discussion with your family and physicians is
the best way to ensure that your choices will be understood and
honored.
Family members may wish to have more information about
making decisions for end-of-life medical care. They may contact Project
GRACE for information.
27. Should I tell others
about my Project GRACE Advance Care Plan?
If you believe that having an Advance Care Plan document 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 Care Plan of their own. You may wish to refer
others to Project GRACE for further information.
