ABOUT THE ADVANCE DIRECTIVE FOR
RECEIVING ORAL FOOD AND FLUIDS IN DEMENTIA
Introduction
There are two purposes to completing an Advance Directive for Receiving
Oral Food and Fluids In Dementia. The first is to document your wishes about when
to stop efforts to provide assisted oral feeding because of an advanced dementia.
The second is to ensure that your appointed health care agent is empowered to
honor and implement those choices if you suffer from advanced dementia.
The accompanying Directive (beginning on page 4) provides two alternatives
concerning assisted oral feedings:
A. The Directive permits you to direct, in a particular clinical situation, that
ALL assisted feeding of food and fluid be stopped.
B. The Directive also permits you to direct, in that same clinical situation, that
comfort-focused feeding be provided.
You may sign the Directive with the directions in A or B, not both.
A person who is diagnosed with Alzheimer’s or another incurable dementing
disease may wish to have control over the circumstances and timing of his or her
death. While Alzheimer’s is considered a terminal disease, because the duration of
the disease can be long, the terminal stage of the disease may not occur for many
years, and long after decision-making capacity and the ability to self-feed are lost.
The average time from diagnosis to death is 7 years, but many individuals live
considerably longer. So long as those with advanced dementia receive good
physical care and are assisted with eating and drinking, it can be difficult to predict
when death will finally occur.
In the final, ‘terminal’ stage of all dementias, a person may become unable to
swallow what is placed in his or her mouth, and lose the ability to ambulate, speak,
recognize loved ones, and control bowel or bladder functioning. Individuals with
Alzheimer’s disease who contact End of Life Choices New York want to know how
they can avoid the final stages of this disease. It is for those individuals, and others
who fear being diagnosed with dementia in the future, that the Directive about
assisted oral feeding has been created.
Appointing Your Health Care Agent
If you are age 18 or older, we recommend that you complete a health care
proxy form appointing someone (and an alternate) as your health care agent who
will be the advocate for your wishes. The agent will be authorized to make all
health care treatment decisions for you if and when you lose your decision-making

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 capacity. Your agent is instructed to assume this responsibility and to make future
treatment decisions as you would decide, if you were able to make that decision.
Health care providers are expected to honor decisions made by an appointed health
care agent.
Other Documents
You might also consider completing a MOLST (Medical Orders for LifeSustaining Treatments) with your primary care physician. That document includes
your current wishes about receiving cardiopulmonary resuscitation (CPR) if your
heart stops or being placed on a mechanical ventilator (breathing machine) should
your breathing becomes compromised.
If you complete a MOLST, be sure to add a stipulation that your instructions in
your directive about assisted feeding should take precedent and be followed. You
should add that stipulation in the space for OTHER INSTRUCTIONS in Section E of
the MOLST form.
Although completing a MOLST is recommended, if you do not do so, you
should obtain from your physician a signed Out of Hospital Do Not Resuscitate
Order. You should also discuss with your physician your Advance Directive for
Receiving Oral Food and Fluids In Dementia in the event that you suffer from
advanced dementia. Provide a copy of this document to your primary care
physician. Be sure there is no conflict between instructions in these various
documents about your wishes to be fed.
Your Advance Directive for Receiving Oral Food and Fluids In Dementia does
not replace your completed Health Care Proxy or MOLST form, but it is an important
additional tool to empower you and your appointed agent to make decisions about
receiving oral assisted feeding, in the event that you suffer from advanced
dementia. Your completed Directive should be photocopied, discussed, and provided
to all family members, loved ones, other health care professionals and care-givers.
Instructions for Execution of the Advance Directive
1. Sign and date the Directive when you are in the presence of two witnesses who
are 18 or older. A witness may not be your health care agent or an alternate
agent. The agent may not be your primary physician.
2. Have two witnesses who are age 18 or older (preferably persons who know you
well) sign and add their printed names, addresses and phone numbers.
3. Executing one copy of the Directive is sufficient, but additional copies can be
executed, if that is convenient for everyone. (Photocopies are generally accepted
by health care providers.)
Additional Steps to Consider After the Directive is Signed

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 1. You might find it helpful to meet with your family attorney to review the Directive,
to explain your wishes and to provide her or him with a copy of the Directive along
with your concerns and your reasons for completing it.
2. You should also give a copy to your primary physician and ask him or her to make
it a part of your medical records.
3. You might consider videotaping a statement explaining why you have completed
the Directive, what your values and wishes are regarding this choice, and that you
have made this decision without coercion. Doing so might facilitate a legal defense
of the document, should the need arise. Copies of the video can also be provided to
your health care agent, your physician and family members. A videotape is the
most powerful way to explain why you have completed the Directive, but you can
also add a separate page to the directive to explain in writing your reasons for
signing it.
4. Be sure to tell all those who care about you that you are depending on them and
your agents to honor your requests. Ask them to promise NOT to ignore or disregard
your Directive because they think your quality of life is satisfactory or because you
appear to be comfortable. Their job is to represent your wishes and preferences.
5. If you anticipate moving to a long-term care or memory care facility at some
point, it is important to explore whether the administrators of the facility will honor
your Directive before you are admitted. This may take some time as this document
about limiting assisted oral feeding is currently a somewhat novel approach to
advance care planning. Get help from those who care about you and your wishes.
6. Be sure that your health care agent and the alternate agent, family members,
and all health care professionals know that you want to receive good symptom
management and that they are aware of your directive about oral feeding. Thus
access to hospice or palliative medical oversight should be provided at the
appropriate time.
Please note that this Directive has not received judicial review in New York State. If
you have questions or need assistance in completing the Directive, please call the
End of Life Choices New York consultation service number at 212-252-2015, and we
will be pleased to assist you.
Please consider providing EOLCNY with a tax-deductible donation to help us to
continue to provide our free services to those who are planning ahead or facing the
end of life. Donations can be made at www.endoflifechoicesny.org.

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 ADVANCE DIRECTIVE FOR
RECEIVING ORAL FOODS AND FLUIDS IN THE EVENT OF DEMENTIA
I, ________________________, residing at ________________________
___________________, am creating this document because I want my health care
agents, medical providers, caregivers, family members, and other loved ones to
know and honor my wishes regarding assisted oral feeding of food and fluids if I am
in an advanced stage of Alzheimer’s* or other incurable, advanced dementing
disease and:
1. I am unable to make informed decisions about my health care, and
2. I am unable to feed myself.
Why I Am Documenting My Instructions Concerning Oral Feedings
Under the conditions that may be imposed upon me by advanced dementia,
including my inability to communicate comprehensively with loved ones or care
givers, and my physical dependence on others for all aspects of bodily care,
continuing life would have no value for me. In those conditions, I would want to die
peacefully and as quickly as legally possible to avoid a drawn-out, prolonged dying
that would involve unnecessary suffering for me and for those I love.
This Advance Directive is intended to supplement any instruction I may have
given in a health care proxy, living Will or other document.
Choose the provisions of either Option A OR Option B by entering
your initials in the corresponding space below.
OPTION A

OPTION B

The provisions of this column are
selected ______ (initial)

The provisions of this column are
selected ______ (initial)

Medications and Life-Sustaining
Treatments

Medications and Life-Sustaining
Treatments

If my appointed health care agent
concludes, after consultation with my
primary health care provider, that I am
suffering from advanced dementia and
conditions 1 and 2, above, are met, I
want all medications and treatments
that might prolong my life to be withheld
or, if already begun, to be withdrawn,

If my appointed health care agent
concludes, after consultation with my
primary health care provider, that I am
suffering from advanced dementia and
conditions 1 and 2, above, are met, I
want all medications and treatments
that might prolong my life to be withheld
or, if already begun, to be withdrawn
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 including cardio-pulmonary resuscitation
and the provision of nutrition and
hydration whether provided artificially or
medically or by hand or by assisted oral
feeding.

including cardio-pulmonary resuscitation
and the provision of medically provided
nutrition and hydration. I would want to
receive assisted oral feedings only under
the following circumstances:

Assisted Hand Feeding

1. So long as I appear receptive and
cooperate in eating and drinking by
showing signs of enjoyment or positive
anticipation of eating and drinking, I
want to receive assisted or hand oral
feedings.

If I am suffering from advanced
dementia and appear willing to accept
food or fluid offered by assisted or hand
feeding, my instructions are that I do
NOT want to be fed by hand even if I
appear to cooperate in being fed by
opening my mouth.

2. I would want to be fed only those
foods I appear to enjoy, in any texture I
prefer, and in whatever amount I readily
accept.
3. I would want all attempts to provide
assisted oral feedings stopped when I no
longer seem to enjoy or appear willing to
eat or drink, or if I begin to cough, choke
or aspirate oral feedings into my lungs.
4. I do not wish to receive assisted
feedings once I no longer willingly open
my mouth or I appear indifferent to
being fed, or spit out food or fluids.
5. I do not wish to be coerced, cajoled or
in any way forced to eat or drink.

My Hygiene and Comfort
I want to receive good hygiene and other measures to assure comfort and to
receive appropriate medications for relief of any signs of anxiety, agitation,
insomnia, or pain, with hospice or palliative oversight. I would like my lips and inner
surfaces of my mouth and gums to be kept moistened to minimize discomfort. I
want to receive medications for pain or anxiety in sufficient dosages and with
sufficient frequency to assure effective relief of suffering even though such
medication might shorten my life.

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 I Hope to Die at Home
It is my wish to die at home rather than in an institutional setting, provided
this does not impose an unreasonable burden on my family. If an institutional
placement becomes necessary, I would like my health care agent to determine
whether the facility will honor my wishes concerning hand feeding and other lifeprolonging measures as written in these directions. If not, I would like not to be in
that facility and instead placed under hospice care in a setting where capable staff
will provide compassionate end-of-life care in accordance with these directions.
* By "advanced Alzheimer’s disease" I mean stage 6 or 7
(moderate to severe) of the Functional Assessment Staging Tool
(FAST) which includes severe cognitive decline and the need for
extensive assistance for most activities of daily living including
toileting and eating.
My Signature _____________________________

Date ____________

We, whose names are provided below, declare that the person who signed this
document is personally known to us, appears to be of sound mind and acting of his
or her own free will, and signed this document (or asked another to sign this
document) in our presence.
Witness 1:
Signature ___________________________________
Printed name ________________________________

Date ______________
Phone _____________

Address _____________________
_____________________

Witness 2:
Signature ___________________________________
Printed name ________________________________

Date _____________
Phone ____________

Address _____________________
_____________________

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