CLINICIANS CORNER

CLINICAL CROSSROADS
CONFERENCES WITH PATIENTS AND DOCTORS

A 93-Year-Old Man With Advanced

Dementia and Eating Problems
Susan L. Mitchell, MD, MPH, Discussant
DR BURNS: Mr P is a 93-year-old retired engineer from Russia with a history of dementia, hypertension, type 2 diabetes mellitus, benign prostatic hypertrophy, chronic renal insufficiency, and presumed renal cell cancer. He has Medicare
and Medicaid insurance.
Mr Ps dementia was diagnosed 10 years ago, manifesting as gradually progressive short-term memory loss, with
a sharper decline during the past 2 years. He moved to the
United States in 1994 and has lived with his daughter since
his wife died 20 years ago. Prior to October 2006, he could
be left alone for several hours, ambulated with a walker, and
fed and toileted himself independently but needed assistance with his other activities of daily living.
In October 2006, Mr P was hospitalized for a witnessed
episode of unresponsiveness. Magnetic resonance imaging/
magnetic resonance angiography revealed age-related atrophy of his brain and an electroencephalogram result was normal. A methicillin-resistant Staphylococcus aureus urinary
tract infection was diagnosed. An abdominal computed tomography scan showed a right kidney lesion suggestive of
renal cell carcinoma, but Mr Ps daughter declined further
evaluation. His unresponsiveness was attributed to dementia. He was discharged to his daughters home but was readmitted a few weeks later with another episode of unresponsiveness. An electroencephalogram demonstrated
encephalopathy without focal abnormalities. At this point,
his daughter felt unable to continue caring for him. He was
discharged to a nursing home.
At the time of nursing home admission, Mr P had profound memory deficits, lacked the cognitive skills to participate in daily decision making, was dependent in all his
activities of daily living, and was incontinent of urine and
stool. He could recognize his daughter. His dementia was
complicated by agitation and aggressive behavior. He ambulated with a walker but had recurrent falls. His oral intake was poor and he occasionally refused to eat. A bedside
swallowing evaluation revealed mild oral dysphagia. A mechanically altered diet, nutritional supplements, and dental referral for ill-fitting dentures were recommended. NoneCME available online at www.jama.com
2007 American Medical Association. All rights reserved.

More than 5 million Americans have dementia, a leading cause of death among persons older than 65 years
in the United States. Eating problems typically develop
during the advanced stage of dementia, which requires
decision making to direct care toward either palliation
or more aggressive measures, such as tube feeding. The
case of Mr P, a 93-year-old man with end-stage dementia and recent hip fracture, illustrates the issues involved in this challenging crossroads when his daughter is confronted with his failure to orally maintain
adequate hydration and nutrition. The discussion reviews the epidemiology and natural history of advanced
dementia, the barriers to providing palliative care to patients with this condition, the role of pharmacotherapy,
and the treatment options for feeding problems and the
advantages and disadvantages of each option, and suggests an approach to help clinicians provide effective and
compassionate decision support to patients with advanced dementia and their family members.
JAMA. 2007;298(21):2527-2536

www.jama.com

theless, his weight declined from 138 lb to 128 lb over the

next 2 months. His body mass index was 19.5.
In January 2007, Mr P was transferred to a special dementia care unit because of behavior problems. After he became accustomed to the staff and was treated for constipation, his oral intake improved. In March 2007, Mr P fell and
fractured his right femur. He was hospitalized and underwent surgical repair of his hip. On returning to the nursing
home, Mr P was at his baseline cognitive status but refused
to eat or drink. Intravenous hydration was provided for sevThis conference took place at the Medicine Grand Rounds at Beth Israel Deaconess Medical Center, Boston, Massachusetts, on May 24, 2007.
Author Affiliation: Dr Mitchell is Associate Professor of Medicine, Harvard Medical School and Department of Medicine, Beth Israel Deaconess Medical Center,
and Senior Scientist, Hebrew Senior Life Institute for Aging Research, Boston, Massachusetts.
Corresponding Author: Susan L. Mitchell, MD, MPH, Hebrew Rehabilitation Center, 1200 Centre St, Boston, MA 02131 (smitchell@hrca.harvard.edu).
Clinical Crossroads at Beth Israel Deaconess Medical Center is produced and edited by Risa B. Burns, MD, Eileen E. Reynolds, MD, and Amy N. Ship, MD. Tom
Delbanco, MD, is series editor.
Clinical Crossroads Section Editor: Margaret A. Winker, MD, Deputy Editor.
(Reprinted) JAMA, December 5, 2007Vol 298, No. 21 2527

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eral days, although his intake did not improve and he ultimately pulled out the intravenous line. After consultation
with Mr Ps physician, his daughter decided not to restart
intravenous fluids or initiate tube feeding.
MR PS DAUGHTER: HER VIEW
In September, all of a sudden he had seizures. He was in
the hospital for 4 weeks and he went home, then in a short
time he was back. And they couldnt find anything. He didnt
want to eat, he was in terrible condition. I was offered to
have a feeding tube at that time because he didnt really eat.
But he was yelling at me, Leave me alone! He was pushing the table, he didnt want to eat, and then when he did it
was just a little. Then he was moved over to the nursing home
and it was likeI dont know how to say, but little by little,
he was eating better and he was drinking better. But if he
doesnt want it, he just pushes the food. I cant force him, I
cant. Because some people you can do it. But with him, he
will tell you how much he loves you, but he wouldnt do it,
because he doesnt want it.
More recently, he was taking just 1 or 2 spoons or
some juice, and then he was pushing it away. He was asking for a drink, and they gave it to him, and he was pushing the drink away and nobody could understand what
he was doing. Also he has his IV, he pulls it out. Father,
youre going to die, I told him. I know, but I dont want
any more. He was saying, What a terrible life, I dont
want. I talked to my relatives in Russia and they are doctors, and they said dont do it. Because you would never
do it for yourself, like everybody. Hes 93, and oh, the life
he would have. For me it would be just so nice to come
to see him, and to feel still that I have somebody who
could somehow protect me.
MR PS PHYSICIAN, DR O: HER VIEW
Mr Ps medical history represents a lot of older people
who get to the end of a long, dementing illness. He first
came to this center in October 2006 and was on one of
the more functional floors. In January he was transferred
to this unit, which is more a palliative care unit. He very
much settled into the floor, and everything was going
progressively better until he fell in March and fractured
his right hip. As we often see, you can sort of fix the individual pieces but you cant get the jigsaw back together.
And his hip was fixed and it was orthopedically a success,
but he refused to eat and drink.
I think for families, theres often the concern of Will
they suffer more by not receiving intravenous fluids or
sufficient nutrition? And I think part of the job of geriatricians and palliative care physicians is to help them
understand that it doesnt automatically mean that there
will be more suffering. This is such a gift that you can
give to a family because its amazing how many decades
later people carry the imagery of their loved ones dying
in their head.
2528 JAMA, December 5, 2007Vol 298, No. 21 (Reprinted)

AT THE CROSSROADS:
QUESTIONS FOR DR MITCHELL
What is the epidemiology of advanced dementia? What are
the typical clinical course and common problems experienced by patients with advanced dementia? What tools are
available to prognosticate life expectancy in advanced dementia? What is the role of hospice in caring for patients with
advanced dementia? What is the role of pharmacotherapy?
Why do patients with advanced dementia get eating problems? What are the treatment options and the pros/cons and
common misconceptions for each? How can clinicians help
guide feeding decisions? What do you recommend for Mr P
and his daughter? What does the future hold?
Epidemiology

In the year 2000, more than 4.5 million individuals in the

United States were estimated to have Alzheimer disease.
By 2050, this number is expected to exceed 13 million.1
In 2003, Alzheimer disease was the fifth leading cause of
death in US individuals older than 65 years.2 The annual
mortality rate from Alzheimer disease increased by 24%
from 2001 to 2004, while the mortality rate for heart disease, cancer, and stroke declined during the same
period.3,4 The cost of caring for individuals with Alzheimer disease is more than $150 billion annually in the
United States alone.5 These statistics likely underestimate
the clinical and societal burden of dementia because they
do not consider other causes of dementia (eg, vascular)
and are derived from death certificate data, which typically underrepresent dementia as a cause of death.6
The best current estimates indicate that median survival
after the onset of symptoms of dementia ranges from 3 to 6
years, shorter than previously estimated.7,8 Approximately
70% of persons with dementia die in nursing homes.9 Therefore, nursing homes are key providers of terminal care to
these patients.
Although advanced dementia clearly meets accepted standards of an end-of-life condition,10 unlike metastatic cancer, it is not widely recognized as a terminal illness.11-16 To
date, little research has focused on the experience of persons dying with dementia. In a 1993 survey, 70% of physicians and 60% of family members thought that care in advanced dementia should focus on palliation.17 Nonetheless,
data suggest that these patients do not receive adequate palliative care.11,15,16,18,19 Compared with other terminally ill patients, those with dementia receive less optimal pain control,18,19 have fewer advance directives,11 undergo more
burdensome interventions,11,12,14 and receive less hospice
care.15,16,20-22
Typical Course

Unless another fatal illness intervenes, patients with dementia progressively lose cognitive and physical function
and reach the advanced stage of their disease. The Global
Deterioration Scale is a widely used dementia staging sys2007 American Medical Association. All rights reserved.

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CLINICAL CROSSROADS

Box. Medicare Hospice Benefit Guidelines for Determining Prognosis in Dementia35

To be eligible for hospice, patients must meet both of the following criteria:
Functional Assessment Staging (FAST)37: Patient must be at or beyond stage 7c and show all of the features of stages 6a-7c.
Medical conditions: Patients must have had at least 1 of the listed medical conditions over the prior year.
Functional Assessment Staging (FAST)
Stage 1: No objective or subjective difficulties
Stage 2: Subjective reports of forgetting
Stage 3: Decreased job functioning evident to coworkers. Difficulty traveling to new locations
Stage 4: Decreased ability performing complex tasks (eg, planning dinner for guests, handling finances)
Stage 5: Requires assistance to choose proper clothes for day, season, or occasion
Stage 6a: Cannot dress without assistance occasionally or more frequently
Stage 6b: Cannot bathe without assistance occasionally or more frequently
Stage 6c: Cannot toilet without assistance occasionally or more frequently
Stage 6d: Incontinent of urine occasionally or frequently
Stage 6e: Incontinent of bowel occasionally or frequently
Stage 7a: Speech limited to fewer than 6 intelligible words during an average day
Stage 7b: Speech limited to a single intelligible word during an average day
Stage 7c: Unable to ambulate independently
Stage 7d: Cannot sit up independently
Stage 7e: Cannot smile
Stage 7f: Cannot hold head up independently
Medical conditions
Aspiration pneumonia
Pyelonephritis or other upper urinary tract infection
Septicemia
Decubitis ulcer, multiple, stage 3-4
Recurrent fever after treatment with antibiotics
Eating problems such that fluid or food intake is insufficient to sustain life (or, if tube fed, weight loss 10% over prior 6
months or serum albumin 2.5 g/dL)

tem ranging from 1 (least severe) to 7 (most severe).23 Stage

7 is defined as having profound memory deficits, total functional dependence, no knowledge of recent or past events,
little to no verbal communication, and limited ability to ambulate. The duration of this stage ranges from months, as
was the case with Mr P, to years.
The clinical course of advanced dementia is characterized by sentinel events that require decision making to
direct care toward either palliation or more aggressive measures. These events include complications that are expected in end-stage dementia, particularly eating difficulties and recurrent infections,24 such as Mr Ps urinary tract
infections. Pneumonia is the immediate precipitating cause
of death in more than 50% of cases.25,26 Sentinel events in
advanced dementia also include acute illnesses common
among frail elderly persons; for example, the hip fracture
experienced by Mr P.
2007 American Medical Association. All rights reserved.

Estimating Prognosis

Prognostication in advanced dementia is challenging and a

barrier to providing end-of-life care.15,27-32 Prognostication
often helps guide end-of-life decision making33,34 and is used
to determine hospice eligibility, which requires an estimated life expectancy of less than 6 months.35 Nonetheless, many experts believe that patients with end-stage dementia deserve high-quality palliative care regardless of life
expectancy.30,31,36
Hospice eligibility for dementia is largely based on the
Functional Assessment Staging (FAST) scale (BOX). FAST
consists of 7 major stages.37 Stage 7 consists of 6 substages:
7a = speech is limited to 5 words or fewer; 7b = all intelligible speech is lost; 7c=nonambulatory; 7d=unable to sit
independently; 7e=unable to smile; and 7f=unable to hold
head up. Stage 7c is currently used as the cutoff for hospice
enrollment.35 This application of FAST has been criti(Reprinted) JAMA, December 5, 2007Vol 298, No. 21 2529

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cized because the tool does not accurately predict 6-month

survival30,31 and because scoring requires that patients advance through the stages in a sequential fashion, which often does not occur.28,36 In one study, the FAST criteria could
not be applied to 41% of patients because their disease had
not progressed in the ordinal sequence of the scale.28 Mr P,
who remained ambulatory until very late in his course, would
not have qualified for hospice based on a primary diagnosis of dementia until after his hip fracture.
Few validated models have been developed to predict survival in advanced dementia.27,30,31,38,39 In one study that developed and validated a model, the Minimum Data Set (MDS)
was used to create a 6-month mortality risk score in newly
admitted nursing home residents with advanced dementia.30 The MDS is a standardized resident assessment instrument mandated for use in all licensed US nursing homes.40
The MDS-derived risk score predicted 6-month mortality
with reasonable accuracy (area under the receiver operating characteristic curve [AUROC], 0.71) and had greater discrimination than FAST stage 7c simulated with MDS variables (AUROC, 0.51).30
Role of Hospice

Hospice care improves the end-of-life experience for patients, including those with dementia.18,21,41,42 Some demonstrated benefits of hospice among nursing home residents with dementia include a lower probability of
hospitalization during the last 30 days of life (hospice, 19%;
nonhospice, 39%)21 and a higher probability of regular treatment for daily pain (hospice, 44%; nonhospice, 27%).18 A
survey of 77 123 bereaved family members of patients who
received care from 796 hospices nationwide found that 73%
of respondents whose loved one died with dementia
(N=8686) evaluated hospice services as excellent, similar
to that reported for cancer (78%) and other chronic terminal conditions (76%).43 Thus, hospice appears to manage
the specific problems encountered in end-stage dementia
(eg, symptom control in cognitively impaired persons) with
reasonable success.
Even though hospice benefits persons with advanced dementia, most do not receive these services. Sachs et al15 estimated that 1 in every 10 persons dying with dementia receives hospice care. In 2005, only 10% of all hospice enrollees
nationwide had a primary diagnosis of dementia compared
with 46% with cancer.44 Barriers to hospice enrollment include accurate prognostication,15,27-32 lack of recognition of
dementia as a terminal condition,11-16 and accessibility of hospice services in nursing homes.18,21,22 Hospice providers cite
prognostication as the most difficult of these challenges.29,32
Despite improved models to estimate survival in dementia,30
these tools are imperfect and their practical application to determine hospice eligibility remains problematic.30,45 Thus, as
long as hospice requires a very high likelihood of death within
6 months, this criterion will continue to hinder the delivery
of hospice services to dementia patients.
2530 JAMA, December 5, 2007Vol 298, No. 21 (Reprinted)

Pharmacotherapy in Advanced Dementia

The use of pharmaceutical agents in advanced dementia

needs to be guided by the goals of care. Cholinesterase
inhibitors (eg, donepezil, rivastigmine) may provide modest reductions in the rate of symptomatic and functional
decline in some patients with mild to moderate Alzheimer
disease.46 Similar benefits have been demonstrated for
memantine (an N-methyl-D-aspartate receptor antagonist)
in moderate to severe Alzheimer disease (Global Deterioration Scale stage 6).46,47 These drugs have not been tested
in very advanced disease (Global Deterioration Scale stage
7) and have adverse effects (eg, nausea, anorexia). Thus,
there is little rationale for administering these pharmacologic agents to patients in the final stage of dementia who
have profound cognitive and functional deficits and are
near the end of life.
Pharmacotherapy is sometimes considered to try to control behavior disturbances in advanced dementia. However, a growing body of evidence suggests that antipsychotic medications are not efficacious in this situation48 and
may be associated with a higher mortality.49 Thus, nonpharmacological interventions are the preferred approach to behavior management in advanced dementia.
A primary role of pharmacotherapy in advanced dementia is to help promote comfort. To that end, it is reasonable
to prescribe drugs that can be administered safely and comfortably to aim to relieve pain (ie, analgesics), dyspnea, and
other burdensome symptoms.24
Eating Problems in Advanced Dementia

Eating problems are a hallmark of end-stage dementia24 because the ability to eat independently is generally the last
activity of daily living to be lost prior to death.50 However,
patients with advanced dementia can live for a relatively long
time despite poor oral intake.51 One theory posits that patients with advanced dementia have an altered state of homeostasis, characterized by a reduced metabolic rate and
lower caloric requirements.52
There are several causes of eating problems in advanced
dementia.24,53 Many patients develop oral dysphagia, manifesting as absent or continuous chewing with a tendency to
pocket or spit food. Pharyngeal dysphagia is also common,
presenting with delayed swallowing initiation, multiple swallows, and aspiration that often leads to pneumonia. Some
patients with advanced dementia lose the ability to perform the task of eating or to interpret the sensation of hunger, while others, like Mr P, may simply refuse to eat. Depression may also present as disinterest in food, and intake
may improve with antidepressant treatment.54
At the onset of eating problems, acute medical problems
(eg, infection, stroke, medication adverse effects) need to
be excluded. Easily reversible causes should be addressed
in keeping with the patients goals of care, as was done for
Mr P by fixing his dentures, managing his constipation, and
altering the texture of his food. Conservative measures may
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CLINICAL CROSSROADS

improve oral intake, such as offering finger foods, smaller

portions, favorite foods, or nutritional supplements.24 A bedside swallowing evaluation may help to identify food consistencies that are easier to swallow and positions that reduce the risk of aspiration.55
Treatment Options

Despite the aforementioned efforts, most patients with endstage dementia will continue to have eating problems, leaving essentially 2 options: continuing to feed by mouth or
placement of a long-term feeding tube (ie, percutaneous endoscopic gastrostomy tube).
The main goal of continued oral feeding is to provide food
and drink to the extent that it is enjoyable for the patient.
This option focuses on comfort rather than life prolongation. Conscientious hand feeding is labor intensive. Approximately 45 to 90 minutes per day are needed to hand
feed and deliver oral medications to patients with advanced dementia56; thus, insufficient staff resources are a
barrier to hand feeding.57 Even with the best efforts, food
consumption is often inconsistent and continues to decline. However, in the decision to continue oral feeding, the
goal of providing a prescribed daily caloric intake is inherently abandoned in favor of palliation.
There are several benefits to hand feeding. This approach allows patients to maintain the pleasure of tasting
food, insofar as it remains comfortable for them to do so.
Participation in hand feeding also provides an opportunity
for family members to care for their loved ones and for formal caregivers to interact with their patients. Family members must be reassured that the decision to hand feed does
not imply the discontinuation of medical care. Palliation includes a host of treatments that should be outlined to the
family. Moreover, families may opt for hand feeding while
at the same time choosing potentially curative treatments
for other problems if consistent with goals of care, such as
antibiotics for infections or surgical repair of a hip fracture, as in the case of Mr P.
Placement of a feeding tube is another approach to eating problems in advanced dementia. Approximately onethird of US nursing home residents with advanced dementia are tube fed,58 with a 10-fold variation in prevalence across
the 50 states.59 Patient characteristics consistently associated with a higher likelihood of being tube fed include
younger age,58,60-62 nonwhite race,13,58,61,62 and lack of advance directives.13,58,60-62
The most commonly cited reasons for tube feeding in advanced dementia include prolonging life, improving nutrition, preventing aspiration, and providing comfort.63,64 Two
sentinel reviews detail the paucity of evidence to support
these purported benefits.65,66 However, a randomized controlled trial of tube feeding in advanced dementia has not
been conducted and would be difficult to justify ethically.
Therefore, it is impossible to definitively know the outcomes of this intervention. The highest-quality data are de2007 American Medical Association. All rights reserved.

rived from observational studies that are limited by selection bias.13,60,67-71 Acknowledging these limitations, important
findings have emerged from this earlier work.
The best available cohort studies suggest that tube feeding does not prolong survival in advanced dementia.13,60 Tube
feeding has also not been shown to improve nutritional status or the clinical consequences of malnutrition, such as pressure ulcers.70,71 While these results may seem counterintuitive, as with other end-stage illnesses, such as terminal cancer
or AIDS, persons with advanced dementia may simply be
too debilitated to derive a demonstrable survival or nutritional benefit from tube feeding. Alternatively, complications from tube feeding may actually promote decline (eg,
electrolyte disturbances, use of physical restraints,
diarrhea).67,68,71
Prevention of aspiration is another commonly perceived
goal of tube feeding. However, tube feeding will not prevent aspiration of oral secretions or regurgitated gastric contents. As such, data from nonrandomized studies consistently indicate that tube feeding severely demented patients
who aspirate will not prevent further aspiration.67-69
Family members often express concern that their relatives with end-stage dementia may suffer from hunger or
thirst.63,64 It is not known to what degree such sensations
are experienced in advanced dementia. One study found no
measurable increase in discomfort following a decision to
withhold artificial nutrition or hydration.72 Dying cancer patients with minimal oral intake report that they do not sense
hunger or thirst beyond what can be alleviated with swabs
or ice chips.73
Tube feeding is associated with risks that warrant consideration.67,68,71 Up to one-third of older tube-fed patients
experience transient gastrointestinal adverse effects (ie, vomiting, diarrhea).71 Serious mechanical problems, such as bowel
perforations, are rare (1%). However, tube dislodgement, blockage, and leakage are more common (4%-11%)
and often necessitate transfer to an acute care facility.71,74
Agitated demented patients may require physical or chemical restraints to prevent tube dislodgment, and tube feeding has been shown to be associated with greater restraint
use.68 Tube feeding is also independently associated with
lower family satisfaction with end-of-life care for nursing
home residents with advanced dementia.75
In summary, the best available evidence fails to demonstrate any health benefits of tube feeding in advanced dementia. Moreover, there are risks associated with the intervention. Given that feeding problems occur at the final stage
of this illness, expert opinion is that hand feeding should
be the default approach and that tube feeding should not
be offered.65,66
Decision-Making Process and Support

Decision making for feeding problems is among the most

difficult clinical crossroads in the course of dementia. The
decision is challenging because it is emotional, value(Reprinted) JAMA, December 5, 2007Vol 298, No. 21 2531

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laden, reliant on substitute decision making, based on limited outcome data, and influenced by many external factors. Faced with these challenges, practitioners should be
prepared to provide effective and compassionate decision
support.
Advance care planning plays a critical role in feeding decisions. The lack of advance directives is a consistent risk
factor associated with feeding tube insertion in dementia.13,58,60-62 Clinicians have an opportunity to prepare patients with early disease and their families about what to expect in the later stages of dementia, including eating
problems. Ideally, these preparatory discussions provide the
context for broader advanced care planning and a scaffold
for future discussions.
Feeding decisions should follow an ethical framework reflecting a balance of benefits and burdens and respect for
autonomy.65,76 The following steps offer a general approach for clinicians to operationalize this framework
(TABLE)84: (1) clarify the clinical situation; (2) establish the
primary goal of care; (3) present the treatment options and
their risks and benefits; (4) weigh the options against values and preferences; and (5) provide additional and ongoing decision support.

Clarification of the clinical situation involves an explanation of feeding problems within the context of the
natural history of end-stage dementia and any compounding acute conditions, such as Mr Ps recent hip
fracture. Patients and surrogates are more likely to
choose care directed toward comfort if they understand
that the end of life may be near.33,34 A recent study used a
video to provide a visual depiction of an actual patient
with advanced dementia.77 Participants were significantly
less likely to opt for aggressive care in the event that they
developed advanced dementia after as compared with
before they viewed this video. A Dutch ethnographic
study underscored that an understanding of the current
clinical situation was among the most important factors
influencing decisions to withhold artificial nutrition and
hydration in patients with advanced dementia.78
Counseling for feeding problems in advanced dementia
requires the elicitation of the primary goal of care and
understanding where the treatment options fit in with
this goal. One framework prioritizes treatment goals into
the following broad categories: life prolongation, maintenance of function, and maximization of comfort.79 Life
prolongation prioritizes survival even at the expense of

Table. Steps to Decision Making for Feeding Problems in Advanced Dementia a

Step
1. Clarify clinical situation

Specific Factors to Consider

Proxy should understand dementia is a terminal condition11-16,36
Explain feeding problems within context of end-stage
dementia25,50,77,78
Review compounding acute medical conditions78
Address easily modifiable factors

2. Establish primary goal of care

3. Present treatment options

and pro/cons of each choice

Is overriding goal of care life prolongation, maximizing function,

or promoting comfort?79

Application to Mr Ps Case
Daughter perceived that Mr P was near
the end of life

Hip fracture, renal mass

Ill-fitting dentures repaired, constipation
treated
Physician discussed goals of care with
daughter; daughter wanted her
father to be comfortable

Where do treatment options fit in with the primary goal?

Ensure adequate time for counseling63
Explain components of palliative care and that hand-feeding option
does not necessarily imply cessation of all medical treatment
Be knowledgeable about the best available evidence regarding
tube feeding65,66,80,81

Hip fracture repaired, urinary tract

infections treated with antibiotics
Physician reassured daughter that Mr P
would not suffer from hunger or thirst
without artificial nutrition and hydration

Address common misconceptions about tube feeding.65,66

4. Weigh options against values
and preferences

What would the patient want?

Mr Ps daughter believed her father would

not want to be tube fed

Follow principles of substitute decision making; advance directives,

substituted judgment, best interests82
Promote culturally sensitive decisions13,58,61,62,83
5. Provide additional and ongoing
decision support

May need to readdress decisions as clinical course evolves78

Engage interdisciplinary team
Encourage family to speak to other trusted advisors
Consider use of decision aids,77,84,85 other printed materials,86
and guidelines87,88

Consider how Russian background may

influence decision making
Initially parenteral hydration used, then
discontinued
Nurses, speech therapy, dietician were
involved
Daughter consulted other family members

a Adapted from Making Choices: Long-Term Feeding Tube Placement in Elderly Patients: A Book and Audiotape for Substitute Decision-Makers.84

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potentially burdensome treatments. Maximizing comfort

gives precedence to palliation, with a willingness to forgo
uncomfortable interventions even if they may prolong
survival. Maintenance of function, lying between these
extremes, may include low-risk, minimally invasive but
potentially curative treatments (ie, parenteral antibiotics,
intravenous fluids).
To promote informed decision making, clinicians should
be knowledgeable about the potential risks and benefits of
hand feeding vs tube feeding as well as about the limitations of the data. Of concern, in a 2001 survey of 195 primary care physicians (50.8% general internists, 49.2% family physicians), the majority believed tube feeding in advanced
dementia reduced aspiration pneumonia (76%), prolonged survival (61%), and improved nutrition (93.7%), revealing a discord with the published literature.80 Subsequent work further substantiates that surrogates high
expectations of tube feeding may be based in part on faulty
information.81
Surrogates need to be advised that decisions should be
based on their perceptions of the patients wishes as guided
by the ethical principles of substitute decision making: (1)
consideration of advance directives; (2) making a substituted judgment; and (3) weighing what is in patients best
interests.82 Mr Ps daughter made a substituted judgment that
her father would not want to be tube fed, as reflected in her
repeated phrase, He does not want it. In one survey, 48%
of surrogates for tube-fed patients with dementia were not
confident that the patients would have chosen the intervention for themselves.63
Finally, clinicians must advocate for patients in the face
of many external factors influencing feeding decisions in advanced dementia, as evidenced by the varying use of tube
feeding across facilities,58,61 states,59-62 and countries.63,83,89
External factors driving these differences include regional
laws,90 facility characteristics,58,62 fiscal and regulatory
policy,56,58,91,92 and societal attitudes toward death and dying.83 Approximately 20 US states have more stringent statutory standards to withhold artificial nutrition and hydration.90 At the facility level, nursing homes in many states
receive higher reimbursement for tube-fed compared with
hand-fed patients, while at the same time, hand feeding requires considerable staff resources, presenting a potential
fiscal incentive for tube feeding.56,91 In addition, nursing home
quality indicators are now publicly available92 that include
weight loss. Thus, facilities may feel compelled to offer
tube feeding to avoid penalization, even when weight loss
occurs as part of the dying process.
Additional strategies to improve feeding decisions in advanced dementia are available. A rapid-cycle quality improvement intervention reduced the number of feeding tubes
placed in hospitalized dementia patients.93 Decision support tools in the form of audio booklets84,85 and videos77 have
been shown to reduce decisional conflict among surrogates. Materials formulated for proxies are available,86 and
2007 American Medical Association. All rights reserved.

guidelines regarding artificial nutrition and hydration have

been developed by professional societies (eg, American Geriatrics Society,87 American Academy of Hospice and Palliative Medicine88). Interdisciplinary team members (eg, nurses,
social workers, clergy) are additional resources for families, and team meetings can be helpful to strive for unified
decisions. On rare occasions, consultation by an ethics committee may be indicated to resolve conflict between decision makers.
RECOMMENDATIONS FOR MR P
AND HIS DAUGHTER
Mr Ps daughter made the difficult decision not to pursue
artificial nutrition and hydration for her father. In my view,
this was the appropriate decision based on the clinical circumstances, her fathers perceived wishes, and the available evidence. Therefore, at this point, the focus of his care
is palliation. For Mr P, this involves standard approaches
to alleviate physical discomfort (eg, relief of dyspnea, pain
control). Pain measurement is challenging in advanced dementia. However, disease-specific tools to assess pain and
discomfort in this condition have been developed and validated.94-96 If available in Mr Ps facility, consultation by a specialized palliative team or hospice referral is worth pursuing. Hospice would not only benefit Mr P but would provide
support to his daughter. Family members experience grief
both before and after the death of their loved one with dementia.97 Few nursing homes offer grief and bereavement
support,97 whereas these services are standard components
of hospice care.97,98
What Does the Future Hold?

The future of advanced dementia care lies in combined clinical, research, educational, and policy initiatives aimed at increasing recognition of dementia as a terminal condition and
determining the best way to provide high-quality palliative
care to the growing number of individuals dying with this
condition. Comprehensive clinical palliative care programs are desperately needed in the nursing homes where
the majority of these patients die.99 Research is under way
to better describe the natural history, the sources of patient
burden, and family experience in advanced dementia.100 Rigorous evaluation of targeted interventions to improve endof-life outcomes is the next critical step. While the number
of specialists with board certification in both geriatrics and
palliative care is increasing, educational strategies are also
needed to improve the knowledge and counseling skills of
primary care physicians, hospitalists, and physicians who
insert percutaneous endoscopic gastrostomy tubes (eg, gastroenterologists, surgeons). However, these efforts will be
of limited benefit without the implementation of rational
health care policies. To that end, new policies should expand hospice eligibility for patients with advanced dementia and promote fiscal (eg, reimbursement for hand feeding) and regulatory (eg, palliative care quality indicators)
(Reprinted) JAMA, December 5, 2007Vol 298, No. 21 2533

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CLINICAL CROSSROADS

incentives for nursing homes that better meet their needs

caring for patients at the end of life.
QUESTIONS AND DISCUSSION
QUESTION: In your experience or that of others, are there
any examples of tube-fed patients who improve to the extent that tube feeding can be discontinued?
DR MITCHELL: In situations where there is a reversible
cause for an eating problem, such as a stroke, older patients may improve to the point that they regain their ability to eat independently and tube feeding can be discontinued.71,81 However, in advanced dementia, the etiology of the
eating problem is usually not reversible, so in my experience, it is very uncommon for tube feeding to be discontinued because the patient regains the ability to eat orally.
More often, tube feeding in advanced dementia is discontinued because the patient declines further intervention and
the goals of care are redirected toward palliation.
QUESTION: I wonder if you could reflect for a moment on
what I see as a big failure in US medicine. One of the things
we are supposed to do as physicians is present options. But
with everything we know about this situation, why in the
world would we be presenting tube feeding as an option to
a patient like Mr P?
DR MITCHELL: In my personal practice, I dont introduce
the option of tube feeding for a patient with advanced dementia, unless the health care proxy specifically brings it
up as a possibility. However, once the option of tube feeding is raised, physicians must be prepared to counsel the
family through the decision-making process.
On a broader level, there are several possible reasons why
tube feeding remains an option that is commonly presented to patients with end-stage dementia in the US health
care system. These reasons include the strong symbolic significance of feeding, an emphasis on individual autonomy
in medical decision making, the wide availability of medical technology, discontinuity across health care settings, fear
of litigation, and health care policies that may facilitate curative treatments over palliation.101 Of note, tube feeding in
advanced dementia is less common in other developed countries (eg, Canada),63,83,89 where different health systems and
cultural attitudes toward death and dying may facilitate a
greater willingness to forgo aggressive end-of-life interventions.
QUESTION: You use the word culture to determine some
of the differences in the use of tube feeding, but I wonder
where socioeconomics might play a role in decision making? Has that been looked at?
DR MITCHELL: Socioeconomic factors do appear to play
a role in tube feeding practice at a facility level.58 Nursing
homes that care for a comparatively higher proportion of
Medicaid beds (ie, that are resource-poor) have higher tubefeeding rates in advanced dementia. At the same time, facilities with more Medicaid beds also care for a relatively
larger proportion of African American patients.58 African
2534 JAMA, December 5, 2007Vol 298, No. 21 (Reprinted)

American race is a strong independent risk for tube feeding in advanced dementia at both the individual and facility levels.13,58,61,62 Thus, there appears to be some interaction among economic resources, culture, and tube feeding
within nursing homes. There are no available data to suggest that socioeconomic factors are determinants of feeding decisions in advanced dementia at the individual level.
Financial Disclosures: None reported.
Funding/Support: This Clinical Crossroads is made possible in part by a grant from
an anonymous donor.
Role of the Sponsor: The funding organization did not participate in the preparation, review, or approval of the manuscript.
Additional Contributions: We thank the patient and his daughter for sharing their
story.
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Policy. 2004;16(3):1-12.

CLINICAL CROSSROADS
UPDATE

Update: An 81-Year-Old Woman

With Temporal Arteritis

CLINICAL CROSSROADS1 ARTICLE PUBLISHED IN JUNE

2006, Dr Robert Shmerling, MD, discussed the diagnostic criteria and treatment options for temporal arteritis. The discussion centered on Mrs V, an active 81year-old woman with a medical history significant for
hypertension, multiple fractures, toxic multinodular goiter, lichen planus, and allergic rhinitis. Mrs V presented with
a severe headache and described additional intermittent
symptoms, including difficulty opening her mouth, pain behind her eye, and unusual lumps on her forehead. Her physical examination was normal and her erythrocyte sedimentation rate was 46 mm/h. A temporal artery biopsy showed
active giant-cell arteritis with intimal edema and focal fibrinoid necrosis. Dr Shmerling recommended that Mrs V
undergo a minimum of 4 to 6 months of corticosteroid
therapy, extending to 1 to 2 years if necessary. At the conference, Mrs V wondered how long she had had temporal
arteritis before it was diagnosed.
NA

MRS V
Im feeling better than I have in about 3 years. I dont
have any temporal arteritis symptoms anymore. I only
had 1 headache that drove me to the doctor and led to

2536 JAMA, December 5, 2007Vol 298, No. 21 (Reprinted)

the diagnosis. And it was a booming headache, it was an

unbelievable headache. But thats the only time Ive had a
headache, before or after my diagnosis. Before the diagnosis, I had sore shoulders and they thought maybe they
were frozen shoulders, and when I got the temporal arteritis, my doctor told me it was polymyalgia rheumatica
that was a precursor to my temporal arteritis.
I have been taking prednisone since the diagnosis. It was
tapered, very gradually, and now its down to 1 mg/d. I think
Ill be through with the prednisone the next time I have an
appointment.
Although I worked throughout the course of my treatment for temporal arteritis, Im not working anymore. I dont
drive anymore. I like having some little things to do, maybe
12 hours a week or so. But Im adjusting OK to not working. Im still seeing my grandkids.
Nadine Farag, BS
Amy Ship, MD

REFERENCE
1. Shmerling RH. An 81-year-old woman with temporal arteritis. JAMA. 2006;
295(21):2525-2534.

2007 American Medical Association. All rights reserved.

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