Tube Feeding in Dementia

SPECIAL ARTICLE

Tube Feeding in Dementia: How
Incentives Undermine Health Care
Quality and Patient Safety
Thomas E. Finucane, MD, Colleen Christmas, MD, and Bruce A. Leff, MD
For nursing home residents with advanced dementia,
very little evidence is available to show clinical benefit
from enteral tube feeding. Although no randomized
clinical trials have been done, considerable evidence
from studies of weaker design strongly suggest that
tube feeding does not reduce the risks of death,
aspiration pneumonia, pressure ulcers, other infections, or poor functional outcome. Nationally, however, utilization is high and highly variable. Systemwide incentives favor use of tube feeding, and may
influence substitute decision-makers, bedside clinicians, gastroenterologists, and administrators regardless of patient preferences or putative medical
indications.
Underlying the widespread use of this marginally
effective therapy is a basic misunderstanding about
malnutrition and about aspiration pneumonia. The
face value of tube feeding is strong indeed. In addition
to the general faith in intervention, the impulse to “do
something” when things are going poorly, financial
incentives favor tube feeding for gastroenterologists,

hospitals, and nursing homes. The desire to avoid regulatory sanctions, bad publicity, and liability exposure
creates a further incentive for nursing homes to provide tube feeding.
Rational, evidence-based use of tube feeding in advanced dementia will depend fundamentally on improved education. Reimbursement schemes require
significant modification to limit the irrational use of
tube feeding. Nursing home regulations based more
securely on scientific evidence would likely reduce
nonbeneficial tube feeding, as would evidence-based
tort reform. Quality improvement initiatives could create positive incentives. Realigning incentives in these
ways could, we believe, improve the quality of care,
quality of life, and safety of these vulnerable individuals, likely with reduced costs of care. (J Am Med Dir
Assoc 2007; 8: 205–208)

Tube feeding is generally ineffective for nursing home residents with advanced dementia.1,2 Consistent evidence shows
that tube feeding does not reduce the risk of death,1,3,4 or
aspiration pneumonia,1,5 and is unlikely to reduce the risk of
pressure ulcers,1 other infections,1 or poor functional outcome.6 Although definitive evidence from randomized trials
has not been generated, thousands of patients have been
observed in studies of weaker design, and the overwhelming

weight of evidence is that these goals are not accomplished.
Despite these data, and the near-complete lack of biological
plausibility or credible data to show that this invasive procedure is beneficial, hundreds of thousands of demented patients
have received feeding tubes over the past 2 decades. In 1999,
34% of severely cognitively impaired nursing home residents
in the United States had feeding tubes, with rates ranging
from 9% in Maine to 47% in Alabama.7 System-wide, substitute decision-makers (SDMs), hospital physicians, gastroenterologists, hospital and nursing home administrators, and
nursing home caregivers all have strong incentives favoring
tube feeding, but these incentives are independent of the real
or putative medical indications, and often of the patient’s
preferences. Here we describe these incentives, and suggest
how they might be modified. We focus on patients with
advanced dementia, and do not consider patients with other
potential indications for tube feeding, such as neuromuscular
or gut disease.

Johns Hopkins Bayview Medical Center, Baltimore, MD (T.E.F., C.C., B.A.L.).
This work was funded by the Institute for Incentives in Health Care and the
Borchard Foundation.
Address correspondence to Thomas E. Finucane, MD, Johns Hopkins Bayview
Medical Center, John R. Burton Pavilion, 5505 Hopkins Bayview Circle, Baltimore, MD 21224. E-mail: [email protected]

Copyright ©2007 American Medical Directors Association
DOI: 10.1016/j.jamda.2007.01.007
SPECIAL ARTICLE

Keywords: Enteral nutrition; incentives; reimbursement; regulation; tort reform

Finucane et al. 205

INCENTIVES PROMOTING THE USE OF
FEEDING TUBES
Face Validity
A vulnerable, demented elder who looks malnourished,
eats little, and sometime coughs when fed presents a tragic set
of problems to family and caregivers. The question of tube
feeding, to prevent malnutrition or aspiration or both, usually
arises after some increment in the patient’s already terrible
frailty causes some clinical threshold to be crossed. If a patient
is eating little and losing weight, it only makes sense to
provide adequate nutrition via feeding tube. If the patient
coughs when fed and later gets aspiration pneumonia, tube
feeding can circumvent most mealtime aspiration. The logic
of intervention appears inescapable to loved ones and professionals alike.
Data about the use of tube feeding do not support this
apparent benefit. Although advanced cachectic illness can
closely mimic starvation, with decreased appetite, poor nutrient intake, weight loss, and increased morbidity and mortality, administering protein and calories does not prevent the
adverse clinical outcomes imputed to malnutrition. The effort
to distinguish wasting illness from inadequate nutrient intake
is now under way.8
Strong data suggest that tube feeding does not improve
survival or reduce infection.3,4 Evidence about pressure sore
outcomes1 and functional status6 also fails to show benefit.
With respect to aspiration pneumonia, tube feeding cannot
protect the airway from either oral secretions or regurgitated
gastric contents, prime causes of the syndrome, and in fact no
published data suggest that tube feeding reduces the risk of
aspiration pneumonia.1,5
Bedside Decision Making
A variety of retrospective studies, not all limited to dementia patients, have examined decision making before feeding
tube placement. Specific advance planning by patients was
unusual.9 SDMs reported that they were inadequately informed about benefits and risks,9 –11 were not advised of alternatives,10 or that they received conflicting information or
none at all.11 SDMs often reported that providers pressured
them to agree, and sometimes never sought consent at all.9
Many discussions about tube feeding lasted less than 15 minutes.9 SDMs described the decision-making process as “diffuse”:
“the idea to proceed with tube feeding rarely emanated from
patients or family members, and mapping out the genesis of
the idea in individual patients proved to be difficult (p
1108).”10
Primary care physicians reported that requests for feeding
tube placement often originated in the nursing home,12 and
nursing home social workers believed that most administrators, medical directors, and directors of nursing favor tube
feeding.13 A majority of primary care physicians believed the
intervention is beneficial and represents a standard of care,12
and family members had high and sustained expectations of
benefit.14
At the bedside, primary care physicians have little incentive to work to overcome these prima facie assumptions about
206 Finucane et al.

malnutrition and aspiration. If nutrients are provided by tube:
“Everything is being done.” A carefully crafted decision to
forgo tube feeding can so easily be undermined by subsequently involved family members or providers, who may brandish “the sloganism of starvation.”15
Speech therapists and nutritionists focus on swallowing
problems and nutrient intake, and may thereby contribute to
the “diffuse” impetus to begin tube feeding. Nursing homes
with speech therapists on staff have higher rates of tube
feeding.16 Emphasizing a patient’s poor nutrient intake, nutritionists may implicitly encourage tube feeding.
The Gastroenterologist
In Maryland, the professional charge for placing a percutaneous endoscopic gastrotomy (PEG) is $1500. A specialist
who questions the medical appropriateness could be viewed as
an uncooperative obstructionist by family members and the
referring physician.
The Hospital
In Maryland, the facilities fee for placing a PEG is $1970.
The perception that nursing homes will more readily accept a
severely demented patient once a feeding tube has been
placed may influence hospitals that are trying to shorten
length of stay.
The Nursing Home
Mitchell17 has described financial incentives that favor
feeding tube placement in nursing homes. If a Medicaidfunded resident is hospitalized and a feeding tube is placed,
the facility receives Medicare skilled nursing benefits, a significant increase over Medicaid, for up to 100 days after his
return. Thereafter, total Medicaid reimbursement remains
higher. In many states, residents who are difficult and timeconsuming to feed are classified as “reduced physical function”
if fed by hand, but as “special care,” with a substantially higher
reimbursement rate, if fed by tube.17 In Maryland, daily reimbursement is $20 to $25 higher for residents with feeding
tubes. Perversely, nursing home costs are higher for hand-fed
patients.18 By direct observation, staff time required to feed
nursing home patients “was comparable across different levels
of eating dependency,” on average 35 to 40 minutes per meal,
and the Resource Utilization Group System underestimates this
requirement when calculating staffing and reimbursement.19
Perhaps more important than reimbursement considerations, tube feeding offers nursing homes some protection
against the deep-seated presumption that weight loss is a sign
of negligence. A 2003 General Accounting Office report to
Congress on nursing homes20 referred to “examples of actual
harm, including serious, avoidable pressure sores; severe
weight loss; and multiple falls resulting in broken bones and
other injuries (p 16).” The report refers to federal guidelines
requiring that each “facility must ensure each resident maintains acceptable parameters of nutritional status, such as body
weight (p 52).” The opinions of nursing home surveyors can
be powerfully influential, and tube feeding can provide
ready documentation that “adequate nutrition” has been
provided.
JAMDA – May 2007

For concerned family, as in the hospital, it is easy to
demonstrate that “everything is being done” if the patient
receives “adequate nutrition” through a feeding tube. For this
same reason, tube feeding might also be considered protective
against tort litigation when a frail elder loses weight or develops pressure sores. Fear of adverse publicity may be a strong
incentive to avoid the appearance that a patient’s death
resulted from malnutrition and lack of tube feeding.
CHANGING THE INCENTIVES
Education
Education of family members and professionals alike is the
fundamental first step toward sensible use of feeding tubes. If
tube feeding were life prolonging, then a strong presumption
in favor of its use would, and should, persist. The false belief
that tube feeding prolongs life can be overcome. At one
hospital, educational programs for professionals and establishment of a palliative care team were associated with about a
two-thirds reduction in feeding tube placement.21 Use of tube
feeding among demented patients receiving care in Veterans
Affairs hospitals fell by about a third from 1996 to 2001, after
rising from 1990 to 1996, without changes in administrative
rules or reimbursement schemes.22 Few incentives exist to
encourage educational programs for families, physicians, or
staff.
Reimbursement
Changing incentives for gastroenterologists is problematic.
Administrative oversight is improbable. Education is unlikely
to be effective if primary care physicians, with families’ agreement, continue to refer patients for feeding tube placement.
Reimbursing gastroenterologists at lower levels when the indication is “dementia” might lead to a simple change in the
diagnoses provided. Nonetheless, it would send a strong message to the medical community about the intervention’s
ineffectiveness.
How reimbursement of hospitals could be modified is
particularly unclear. Reducing facility fees for feeding tube
placement generally, or for the indication of dementia particularly, would be difficult to operationalize, and the presumed
reduction in length of stay might overpower incentives to
limit its use.
Reimbursement of nursing homes could be altered dramatically. Improved reimbursement for bedside care is essential,
although this would run counter to the well-established tradition of reimbursing at higher levels for technical procedures
than for bedside care—for “exploits” rather than “uneventful
diligence” in Thorstein Veblen’s formulation.23 A few modifications would be straightforward. Eliminating Medicare reimbursement for “skilled days” following tube placement, and
equalizing payments for hand feeding and tube feeding would
reduce much of the financial incentive to place feeding tubes.
Regulations and the Survey Process
Federal nursing home regulations should be revised. As
written, they provide a strong incentive to deliver calories and
protein, but they are based on discredited ideas about nutriSPECIAL ARTICLE

tion and nutritional markers. Albumin levels are explicitly
described as “parameters” of nutritional status in federal regulations,20 for example, yet albumin levels remain normal
during prolonged starvation,24,25 and tube feeding does not
raise albumin levels in demented nursing home residents.26
Weight loss, too, is presumed to be the result of inadequate
nutrient intake. Regulations should more explicitly acknowledge that weight loss and hypoalbuminemia often result from
catabolic illness and that generous administration of protein
and calories may not reverse them, nor prevent subsequent
morbidity and mortality.27,28 High rates of tube feeding
among institutionalized patients with dementia should raise
questions about the quality of care in a facility, particularly if
associated with other evidence of suboptimal care. For many
residents admitted to nursing homes with feeding tubes, removal of the tube is possible29,30; this would be a strong
marker of good quality.
The Centers for Medicare and Medicaid Services
Several approaches are available to the Centers for Medicare and Medicaid Services (CMS), primarily through its
Quality Improvement Organizations (QIOs), that could help
rationalize the use of tube feeding. These include “friendly”
technical assistance, measurement and public reporting of
feeding tube use, inclusion of tube feeding use rates as part of
the payment formula for individual nursing homes, and, perhaps ultimately, explicit proscription of the practice as a
condition of participation in Medicare.
Tort Reform
Defensive medicine is a well-recognized problem31 and
good solutions remain elusive. Anecdotally, tube feeding is
often initiated as a defensive measure. In our experience,
families with unrealistic expectations may demand tube feeding for an elderly family member who is failing and some
physicians may acquiesce, at least in part for fear of litigation.
HOW RESEARCH COULD HELP
Distinguishing disease from neglect would be a decisive
advantage. Some nursing home residents lose weight and die
because they are mortally ill and others because they receive
inadequate help with feeding. There may be a third category
of patient whose disease would be slowed but not stopped by
intensive provision of nutrients. Biochemical characterization
of an inflammatory cachectic state associated with weight loss,
but unresponsive to nutrient intake, would be an important
development. Evidence that will permit identification of this
state is currently being developed.8
Scrupulous scientific attention to the clinical value, if any,
of swallowing studies, compensatory feeding techniques, dietary modifications, and local nursing home factors such as
staffing levels would put nursing home practice onto surer
footing. Finally, the effects of aligning economic and regulatory incentives with science should be studied.
CONCLUSION
Tube feeding is overused in the care of nursing home
residents with advanced dementia. We are not suggesting that
Finucane et al. 207

patients should not receive nutrition; we believe that a careful, motivated program to improve oral nutrient intake is
essential from the human as well as the scientific point of view
in caring for all frail, demented, institutionalized people.
When such patients near death and feeding becomes ever
more difficult, the face validity of a powerful technologic
intervention, despite data about its ineffectiveness, sets the
stage for this high level of overuse. Several incentives encourage overuse; these incentives have little or nothing to do with
the residents’ preferences or the genuine medical indications.
Improved education, modifications to reimbursement schemes,
clarification and modernization of nursing home regulatory
process, quality improvement initiatives, and rationalization
of the tort system could realign these incentives and, we
believe, improve the quality of care, quality of life, and safety
of these vulnerable individuals, likely with reduced costs of
care.
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