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DM Feature

Dietary Manager 12
&
Nutrition
Palliative Care
A Hospice Dietitians Perspective
by | Donna Gavin, RD, LDN, CDM, CFPP
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comfort care, afrms life and neither
hastens or postpones death.
Curative care, on the other hand, fo-
cuses on quantity of life, attempting
to prolong lifeeven if it is painful or
includes interventions that may not
have successful outcomes.
Hospice strives for the best possible
quality of life for the patient and fam-
ily. Both patients and families partici-
pate in the plan of care, with the pa-
tients preferences and outlook on life
and death of paramount importance.
Pain and symptom management to
promote comfort care are the corner-
stones of hospice. Pain is relative to
each individual, and patients should
not feel they have to be stoic or suf-
fer as they approach death. Illnesses
like cancer can be painful in the last
stages; 70 percent to 90 percent of
patients with advanced cancer report
pain. Uncontrolled pain can lead to
depression, lack of sleep, and a feel-
ing of hopelessness.
There are barriers to appropriate pain
management. If the patient is dement-
ed or aphasic, he or she isnt able to
effectively describe the pain. Some
people may fear that opioid medica-
tions such as morphine can lead to
addiction. And pain management
does not depend solely on medica-
tion; adjunct therapies include sup-
portive talk, singing, prayer, gentle
touch or massage, and music. Distrac-
tions such as reading, humor, and TV
also may help.
Who Receives Hospice Care?
A patient who has been diagnosed
with a terminal illness, who is likely
to die in six months or less, and who
meets certain criteria is eligible for
the Medicare hospice benet. Medi-
cal conditions and their criteria may
include:
ALS or Lou Gehrigs disease: critical
nutrition impairment, rapid disease
progression in the past six months.
F
ood is life. Food is love. If you
are reading DIETARY MANAG-
ER, you are probably a health-
care professional who has chosen
this eld because of an interest in
food and nutrition.
Food not only provides nourishment,
but is regarded as an expression of
nurturing and concern. Food is a vi-
tal part of our daily existence, with
cultural, ethnic, and religious associa-
tions the world over. We commemo-
rate special occasions and holidays
even funeralswith food. When a
person shows a decrease in appetite,
it is upsetting to all concerned.
A terminally ill patient may not want
to eat because of nausea, vomiting,
diarrhea, depression, constipation,
or mouth sores. But as the patients
appetite decreases and he or she
loses weight, there arises a conict
within the strong symbolic connec-
tion between food, survival, and love.
A patients refusal to eat may lead to
anger, frustration, and sadness on the
familys part. That is one reason why
hospice provides a team approach to
palliative nutrition care.
I am a resource dietitian for VITAS
Innovative Hospice Care

of Chicago-
land Northwest, which serves approx-
imately 400 terminally ill patients out
of its Lombard, IL, ofce. VITAS has
seven patient care teams in Lombard,
and I attend as many of the weekly
team meetings as I can, because it is
at team meetings where I learn about
new patients and discuss with the
team how current patients are do-
ing. Each team has a manager, doctor,
chaplain, social worker, and a nursing
staff of RNs and CNAs. We also have
volunteers, music therapists, massage
therapists, and a resource dietitian.
What is the Goal of Hospice?
Hospice provides palliative care with
a focus on the quality of life and the
quality of the dying journey. Dying
is recognized as part of the normal
process of living. Palliative care, or
13 JANUARY 2007
&
Nutrition
Palliative Care
A Hospice Dietitians Perspective
by | Donna Gavin, RD, LDN, CDM, CFPP
(Continued on page 14)
Dietary Manager 14
Cancer that is not likely to respond
to chemotherapy to allow survival
past six months.
Dementia: unable to walk without
assistance, incontinence, no mean-
ingful verbal communication, and
one of the following: hx of aspira-
tion pneumonia, UTI, pressure
ulcer (stage 3 or 4), or the inability
to sustain adequate food and uids.
Failure to thrive: extensive assis-
tance with activities of daily living
(ADLs), a Body Mass Index (BMI)
of <22 (normal range is 18-26), and
the patient declines or does not
respond to tube feedings.
Chronic CVA: severe functional
disability, dysphagia with risk of
aspiration or recurrent infection,
presence of dementia.
Palliative Nutrition in
Different Settings
One goal of palliative nutrition care
is maximizing the patients function-
ing rather than the length of life. An-
other goal is to provide pleasure and
comfort through food. Skilled nurs-
ing facility policies and procedures
may need to be modied to provide
palliative care to a terminally ill resi-
dent. For example, the staff may need
to provide food outside normal meal
times or encourage the family to
bring in favorite foods for the hospice
patient.
One hospice nurse offered a 90-year-
old patient his rst White Castle
burger. He enjoyed it so much that he
ate two burgers and the fries. Now
he looks forward to her weekly visits
when she brings treats such as tacos
and pizza, which they enjoy together.
Diets should be liberalized as much as
possible. Some patients with advanced
cancer may have taste and smell aver-
sions that can cause a decline in ap-
petite and weight loss. Small, more
frequent meals may be more appeal-
ing than standard-size meals. Offer-
ing oral supplements or high-calorie
foods is appropriate if the patient is
eating and there is a need for them.
Medical nutrition therapy such as pro-
tein, vitamins, and minerals may be
appropriate to promote the healing
of pressure ulcers and to prevent the
wounds from becoming infected.
In skilled nursing facilities, the di-
etary manager or dietetic technician
often is responsible for screening pa-
tients, obtaining food preferences,
and interacting with patients and
their families. The dietary manager
makes meal rounds, attends care plan
conferences, and helps with the resi-
dents menus. As dietary managers,
you play a vital role in providing im-
portant communication to the resi-
dents, their families, and the consul-
tant dietitian and the hospice team.
The dietitian is uniquely qualied to
help a hospice patient and family de-
termine nutrition options. According
to the American Dietetic Association,
It is the dietitians responsibility to
provide a combination of emotional
support and technical nutrition ad-
vice on how to best achieve each pa-
tients goal within legal parameters.
Doing so requires that the dietitian
provide frequent assessments, offer
suggestions for feeding alternatives
as appropriate, and make suggestions
for coping with physical impairments
that affect intake.
As a hospice dietitian I have been asked
to evaluate tube-fed patients who are
receiving too much formula, or wa-
ter ushes. The nursing home staff
is understandably fearful of tags for
residents who have lost weight, but I
have attended nursing home patients
who are aspirating because the rate
of tube feeding is too high. This can
lead to aspiration pneumonia and the
need for suctioning.
Articial Nutrition and
Hydration (ANH)
One of the most challenging and dif-
cult decisions to make in end-of-
life care is determining if and when
to withdraw articial nutrition and
hydration. In the spring of 2005 the
Terri Schiavo case in Florida brought
ANH in hospice care into the head-
lines. No matter what your politics
are, here are some of the problems as-
sociated with articial nutrition and
hydration for the terminally ill:
Impaired bowel function: Forcing
food and uids with a tube feed-
ing can cause discomfort when
someone is dying and the bowel
function is shutting down.
Increased secretions: Excess uid
can cause increased lung secre-
tions. The patient may have dif-
culty breathing and may need to be
suctioned, which can be painful.
Increased stool: If the GI system is
shutting down, tube feedings may
cause diarrhea which may lead to
pressure sores if the skin is not
kept clean and dry.
Altered nutrition utilization: In
cancer and AIDS patients espe-
cially, the body uses nutrients
differently. No matter how much
nutrition and calories are provided,
it may not be possible to reverse
malnutrition for these patients at
the end of life.
DM Feature (Continued)
One goal of palliative
nutrition care is maximizing
the patients functioning rather
than the length of life. Another
goal is to provide pleasure and
comfort through food.
15 JANUARY 2007
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Nausea and vomiting are other
risks associated with ANH.
What to Expect at the End of Life
There often is a progression in the
decline in terminally ill patients. This
decline may take place over several
months. The patient may prepare
for death by talking about going
home or giving away possessions.
He or she may sleep more, eat less,
talk less, and be less interested in sur-
roundings. The patients hands may
appear blue or purple and the body
temperature may drop by a degree or
more. You might notice a change in
breathing patterns, such as a series of
rapid breaths followed by a period of
no breaths, known as Cheyne-Stokes
respiration. Hearing is often the last
sense to go, so be thoughtful about
what you say to and about a seeming-
ly unresponsive patient.
The Physiology of Dehydration and
Starvation
When the patient refuses to eat or
drink, families become anxious,
fearing that the patient will starve
to death. Food has such a powerful
and positive association with health
and well-being that it is upsetting to
watch a loved one refuse to eat and
lose weight.
The literature suggests there is no
pain associated with dehydration
and starvation. Research shows that
people who stop eating and drink-
ing slowly become unconscious over
a few days and then die peacefully.
When food and uids are withheld or
withdrawn, the person will be more
affected by dehydration.
The minimal discomfort of a dry
mouth can be taken care of with
good oral hygiene care. Intravenous
uids do not reverse thirst. As a per-
son becomes dehydrated, ketones
produced in the body act as a natu-
ral anesthetic, creating euphoria.
Ketones also cause a decrease in the
level of consciousness.
I have two wonderful patients who
are thriving with hospice interven-
tions. Joes diagnosis is failure to
(Continued on page 16)
It is the dietitians
responsibility to provide a
combination of emotional
support and technical
nutrition advice on how best
to achieve each hospice
patients goal.
Dietary Manager 16
DM Feature (Continued)
End-of-Life Issues & Palliative Care
This Master Track booklet explains the unique aspects of providing
nutritional care to patients who are nearing the end of life.
Discover:
how nutritional goals change during this time
how to provide comfort through revised nutrition care planning
issues relating to the patients family and culture
essential terminology
legal and ethical considerations
tips for dealing with many nutrition-related problems
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End-of-Life Issues
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thrive; he weighs 94 pounds and has
shortness of breath and a history of
alcohol abuse. The nurse caring for
Joe gave him medication to ease his
breathing and stimulate his appetite.
I suggested calorically dense foods
such as cheese, peanut butter, forti-
ed shakes made with ice cream,
cooked cereal, soups, and mashed po-
tatoes made with whole milk, butter,
and protein powder. I also suggested
a multi-vitamin and B complex. Joe
perked up, and the next time I saw
him he was singing and telling jokes.
By September he had gained nine
pounds, and celebrated his 90th
birthday in style. I saw Joe again just
before Thanksgiving. He weighed 113
poundsa weight gain of 19 pounds
since he came into hospice. I told him
he was getting fat and sassy, and he
laughed.
Ellen is a 93-year-old patient with
dementia, failure to thrive, and skin
breakdown. Last summer her weight
was 77 pounds with an ideal body
weight of 100 pounds. She was bed
bound and living with her son. Sug-
gestions I made for Ellen included
small, frequent meals and calorically
dense foods. I wrote a recommenda-
tion for an ice cream sundae every
night to be served on her Dessert
Rose china with a pretty placemat.
Despite the combined efforts of the
hospice team, Ellen continued to
decline and the team believed Ellen
would do better in a nursing home.
Her son was hesitant to do this,
prompting a meeting of the hospice
team, the son, and his pastor. The son
was quite emotional and expressed
guilt about placing his mother in a
nursing home, but agreed to try.
Two months later I visited Ellen in
her nursing home and was amazed to
nd her dressed, sitting in the dining
room and feeding herself. She told me
the food was good; I was delighted to
discover that she weighed 88 pounds.
I saw her a month later; she weighed
95.6 pounds and reported, The food
is still good!
Ellen was thriving, and that made my
day. Even in hospice, food is life, food
is love.
Donna Gavin, RD, LDN, CDM, CFPP is a
consultant dietitian. She teaches food, nu-
trition and cultural diversity at Harper
College in Palatine, IL, in addition to her
work with VITAS patients.
References:
Arcement, P. End-of-Life Issues & Palliative
Care. Dietary Managers Association Master
Track Series.
Kinzbrunner, B. 20 Common Problems for
End-of-Life Care. 2002.
Rapaport, D. Options for Quality Palliative
Care at the End of Life.

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