High Short-term Mortality in Hospitalized Patients With
Advanced Dementia
Lack of Benefit of Tube Feeding
Diane E. Meier, MD; Judith C. Ahronheim, MD; Jane Morris, RN; Shari
Baskin-Lyons, MPH; R. Sean Morrison, MD
Background The influence of tube feeding on survival in hospitalized patients
with advanced dementia is controversial.
Objective To assess long-term survival in an inception cohort, incident tube
feeding placement during the index hospitalization, and the influence of tube
feeding on survival in this group of patients.
Subjects and
Methods Ninety-nine hospitalized
patients with advanced dementia and an available surrogate decision maker were
followed up through and after the index hospitalization for mortality and
placement of a feeding tube. Other variables measured included advance
directive status, presence of a long-term primary care physician, level of
involvement of the surrogate decision maker, admitting diagnosis, prior
hospitalizations, comorbidities, and diagnosis related group diagnostic
category.
Results A new feeding tube was placed in 50% (51/99) of the study patients
during the index hospitalization, 31% (31/99) left the hospital without a
feeding tube, and 17% (17/99) were admitted with a feeding tube already in
place. By stepwise logistic regression analysis, predictors of new feeding tube
placement included African American ethnicity (odds ratio, 9.43; 95% confidence
interval, 2.1-43.2) and residence in a nursing home (odds ratio, 4.9; 95%
confidence interval, 1.02-2.5). Median survival of the 99 patients was 175
days. Eighty-five (85%) survived the index hospitalization, and 28 (28%) were
still alive at last follow-up, a range of 1.3 to 4.2 years after enrollment in
the study. Tube feeding was not associated with survival (P = .90). An admitting diagnosis of
infection was associated with higher mortality (odds ratio, 1.9; 95% confidence
interval, 1.01-3.6).
Conclusions In this cohort of hospitalized patients with advanced dementia,
risk of receiving a new feeding tube is high, associated with African American
ethnicity, and prior residence in a nursing home, and has no measurable
influence on survival. With or without a feeding tube, these patients have a
50% six-month median mortality.
Arch Intern Med.
2001;161:594-599
ALZHEIMER DISEASE and related dementing
illnesses are incurable, progressive disorders leading gradually to complete
loss of cognitive function and subsequent death. By the year 2040, the
prevalence of Alzheimer disease in the United States is estimated to rise to
more than 9 million affected individuals.1, 2 Costs of care increase
with severity of the dementing illness with an annual US estimate of more than
$100 billion in 1993 alone, a figure that is expected to double by 2040.2
While the setting and type of care provided to
persons with advanced dementia and acute superimposed illness is highly
variable,3-13
hospitalization is a frequent sequela of acute illness in advanced dementia.3 This practice occurs
despite the fact that hospitalization is a known hazard for frail elderly
persons14, 15 and its use in
advanced dementia has not been demonstrated to improve clinical outcomes.16-18 Similarly, the
characteristics and predictors of decisions to use a feeding tube when oral
intake declines are not well described.19, 20 Although a recent
systematic review of tube feeding in the care of patients with advanced
dementia found little evidentiary basis for (or against) the practice,20, 21 placement of a
feeding tube is a common intervention in this population.22-24
In the context of an acute illness superimposed
on a late-stage dementia, those charged with decisions about whether to
hospitalize and whether to place a feeding tube must not only consider the
purposes and goals of medical intervention and care for such a patient, but
also must weigh the benefits and risks of hospitalization and tube feeding per
se under this clinical circumstance. Knowledge of the likely outcomes of
hospitalization, and the often associated decision to place a feeding tube, in terms
of its influence on long-term survival, is critical to informed decision making
on behalf of patients with advanced dementia. To this end, in the context of a
study evaluating the influence of palliative care consultation for hospitalized
persons with advanced dementia,12, 25 we assessed long-term
survival in an inception cohort, incident feeding tube placement during the
index hospitalization, and the influence of tube feeding on survival in this
group of patients.
STUDY SUBJECTS
Patients with advanced cognitive impairment admitted to Mount Sinai Hospital (a
1000-bed tertiary care teaching hospital) in New York City during a 3-year
period (August 1994-June 1997) were identified by daily rounds conducted by one
of us (J.M.). Eligibility criteria included hospitalization for an acute
illness; advanced dementia defined as Functional Assessment Staging Tool (FAST)26 stage 6d or greater
with a stable neurological deficit for at least 1 month. Thus, patients with
acute or subacute declines in mental status associated with delirium were
excluded from the study. Reisberg stages 6d and below include patients
incontinent of bladder (6d), and bowel (6e), with speech limited to fewer than
6 words (7a) or a single word (7b), inability to walk (7c), and sit (7d)
without assistance, and inability to hold the head up without assistance (7f).26 Stage was determined
by the best observable mental status prior to hospitalization, based on medical
history obtained from family or other caregivers and health professionals
familiar with the patient's baseline condition.
Permission to approach surrogate decision makers
for participation in the study was initially obtained from the patient's
attending physician. Informed consent was obtained from the designated
surrogate decision maker (ie, duly appointed guardian, health care agent, or
next of kin). The study was approved by the Mount Sinai School of Medicine
Institutional Review Board.
Initial assessment consisted of a complete
medical history and physical examination by a physician member (D.E.M. or
J.C.A.) of the study team. Subjects were then randomized to an intervention or
a control (usual care) group for a prospective randomized trial of inpatient
palliative care consultation, described elsewhere.12, 25 The intervention
consisted of consultative recommendations designed to maximize comfort and
minimize painful and nonpalliative procedures; as well as extensive
consultation and discussion with family, other surrogate decision makers, and
the primary medical team about the goals of care. The intervention25 had no effect on any
measurable outcome except for a slight increase in the numbers of subjects
discharged from the hospital with a palliative care plan documented in their
medical record. Of 182 subjects initially identified as eligible for study
participation and whose primary attending physician gave permission to approach
the surrogate decision maker, consent was obtained in 99 cases, largely because
of incapacity, unavailability, or unwillingness of surrogates to endorse their
relative's participation, as previously reported (Table 1).12 The study subjects
consisted of the 99 patients eligible for inclusion for whom both the primary
attending physician and a surrogate decision maker were available and willing
to give consent for their participation.
A research assistant (S.B.L.) blinded to the
randomization status of the subjects gathered medical record information on
demographics; preadmission medical history of prior hospitalizations or
pneumonia; presence of an advance directive; residence of surrogate (local vs
out of town); availability of a long-term primary care physician;
comorbidities; and diagnosis related group diagnostic category. Main outcome
measures included mortality both during and after the index hospitalization,
site of discharge, length of hospital stay, do-not-resuscitate orders, and
attempts at cardiopulmonary resuscitation and feeding tube placement before or
during the index hospitalization. These outcome measures were determined from
the date of admission during the index hospitalization until discharge or
in-hospital death. The number of hospitalizations in the year preceding and
after the index hospitalization were determined from surrogate interviews and
review of hospital databases. Research assistant telephone contact was
maintained on a 3-monthly basis through June 1999 with next of kin of study
subjects until they were lost to follow up or the subject's death was reported.
STATISTICAL METHODS
Statistical analyses focused on determining factors that predicted placement of
percutaneous feeding tubes and on variables that predicted survival. In the
first analyses, we used 2
tests to examine the relationship between independent variables and the
placement of a feeding tube on the index hospital admission. Variables that
were of borderline significance (P<.15)
were entered into a forward stepwise logistic regression model (entry criteria
of P<.10 and removal criteria
of P>.15). To determine
factors that influenced survival, we performed a series of single-variable Cox
proportional hazards regression models examining the relationship of the
variable of interest to time of death. Variables of borderline significance (P<.15), and variables that have been
previously shown to be related to survival in advanced dementia (ie, dementia
stage, sex, age, prior hospitalizations, prior pneumonia, degree of involvement
of surrogate decision maker, long-term primary care physician, presence of a
pressure ulcer, presence of a feeding tube, and residence at home vs nursing
home),27-32
randomization status, and presence of a feeding tube were entered into the
final survival model.
One hundred ninety-two subjects were eligible to
participate during the 3-year (August 1994-June 1997) study period. Informed
consent could not be obtained from 93 (48%) primarily because there was no
available surrogate decision maker or because the surrogate decision maker was
unable or unwilling to participate in the informed consent discussion process (Table 1).12 Ninety-nine eligible
subjects (52%) had surrogate decision makers who gave informed consent and the
subjects were enrolled in the study.
SUBJECT CHARACTERISTICS
Characteristics of study subjects are given in Table 2.
The average subject was 84.8 years old (age range, 63-100 years), 80 (81%) were
women, 39 (39%) were black, 36 (36%) were white, and 22 (22%) were Hispanic.
Twenty-nine subjects (29%) were admitted from home and 69 (70%) were admitted
to the hospital from a nursing home. An advance directive (ie, a living will,
proxy appointment, or clear oral or written evidence of the patient's wishes)
was available for the index admission in 15 (15%) of the subjects. The most
common admitting diagnosis was pneumonia (44 [44%] of 99 subjects), followed by
other infectious illnesses (14 subjects [14%]) and gastrointestinal disorders
(12 subjects [12%]).
FEEDING TUBES
A feeding tube was present on admission in 17 subjects (17%). Of the 99 study
subjects, 80 (80%) did not have a feeding tube on admission and were not
admitted to the hospital specifically for this purpose. Two subjects (2%) were
brought into the hospital specifically for the purpose of placing a feeding
tube. Of the 82 subjects without a feeding tube on admission, 51 (62%) had a
percutaneous endoscopic gastrostomy tube placed during the index
hospitalization. Thirty-one (31%) of the 99 subjects left the index
hospitalization without a feeding tube. The regression model examining
predictors of feeding tube placement is given in Table 3.
In the logistic regression analysis African American ethnicity (odds ratio
[OR], 9.43; 95% confidence interval [95% CI], 2.1-43.2) and residence in a
nursing home (OR, 4.9; 95% CI, 1.02-2.5) were significantly associated with
receiving a new feeding tube during the index hospitalization.
SURVIVAL
Median survival of the 99 enrolled subjects was 175 days (198 days in the
intervention group and 147 days in the control or usual care group [P = .41]) (Figure 1).
The hazard model is given in Table 4.
Admitting diagnosis of infection (ie, pneumonia or urosepsis) was associated
with mortality (OR, 1.9; 95% CI, 1.01-3.6). Eighty-five subjects (85%) survived
the index hospitalization. Twenty-eight (28%) were still alive at the time of
last follow-up contact (June 1, 1999), a range of 465 to 1502 days (ie, 1.3-4.2
years) after study enrollment. Median survival following admission in subjects
receiving a feeding tube during the index hospitalization was 195 days (range,
21-1405 days) as compared with 189 days among subjects who did not receive a
feeding tube (range, 4-1502 days). Tube feeding was not associated with
survival (P = .9) (Table 4).
In this cohort of acutely ill and hospitalized
patients with advanced dementia, median survival was 6 months despite
hospitalization and use of life-sustaining measures including the
administration of parenteral fluids, antibiotic agents, and artificial nutrition.
Prior studies in hospital,33 long-term care,34 and hospice35 settings have all
found similarly high mortality rates in persons with advanced dementia, of a
magnitude comparable to the prognosis observed in chronic end-stage liver
disease or multiorgan system failure with sepsis36, 37 and some metastatic
cancers.38 Despite the
high risk of death associated with advanced dementia, it is generally not
perceived by family and health care providers to be a terminal illness, owing,
at least in part, to the variability in individual life expectancy demonstrated
in this and other studies.39, 40
The prevalence of hospitalization for acute
illness in severe dementia is unknown since the discharge diagnosis and claims
associated with the illness usually reflect the primary reason for admission,
such as pneumonia. Studies of hospitalization rates of nursing home residents
with pneumonia vary by a factor of 5.3 Propensity to
hospitalize has been shown to be related both to clinical factors3, 5-7, 9, 10 and to the number of
hospital beds per capita.4 As we have previously
reported,12 over one third
of the eligible subjects for this study could not be randomized because they
lacked an available or functional surrogate decision maker: the absence of a
functional surrogate decision maker may also be a risk factor for
hospitalization as there is no family member to advocate for continued care at
home or in the nursing home during a supervening illness.5, 6, 8, 10-12, 41 Since decisions to
hospitalize for acute illness should be based on expectation of benefit in terms
of articulated goals of care for a given individualwhether the goals are primarily focused on maximal possible
prolongation of life or on the relief of symptom distress, or boththe fact that mortality
rates are high and seem to be similar independent of venue suggests that
hospitalization may not be the best way to achieve either goal.42 Randomized trials of
home or nursing home care vs hospital care in acute illness superimposed on
advanced dementia are needed to address this question.
In our advanced dementia cohort, there was no
survival advantage among subjects who received a feeding tube during the index
hospitalization as compared with those discharged from the hospital without a
feeding tube. By multiple regression analysis, African American ethnicity and
residence in a nursing home were associated with a higher risk of receiving a
new feeding tube. A large study of Medicare claims data also found a higher
frequency of feeding tube placement in African American, as opposed to white,
patients.23 Reasons for
the racial difference in propensity to receive a feeding tube are unknown, but
the finding persists after adjustment for the higher likelihood of residence in
a nursing home in our African American subjects. Further, the racial disparity
in feeding tube placement could not be explained by the surrogate decision
maker's geographic proximity to the hospital, by the absence of a long-term
primary care physician, or by the prevalence of advance directives in the
different ethnic groups. As suggested by a recent report,43 the economic hardship
associated with care of a relative with chronic advanced illness44-46 may have
contributed both to a higher risk of nursing home placement and in decisions to
use tube feeding among our African American subjects. We were unable to adjust
for educational and socioeconomic variables among subjects and their surrogate
decision makers that might have accounted for this ethnic difference both in
nursing home residence and in decisions to use tube feeding. Other
investigations of the influence of ethnicity on medical decision making have
suggested that mistrust, associated fears of undertreatment, and differing
cultural evaluations of the benefits and risks of artificial nutrition and
hydration, may contribute to decisions to use life-sustaining technologies,
including tube feeding.47-50
The decision to use a feeding tube when oral
intake cannot be easily sustained may be related to the variable and uncertain
prognosis of advanced dementias and the desire of family and physicians to
prevent the anticipated burdens of malnutrition and dehydration. Despite data
suggesting that among cognitively intact patients refusal of food and water in
the context of terminal illness is not painful51 and the common
observation of aversive feeding behaviors in advanced dementia52 (ie, refusing to eat
or swallow, spitting out food, or holding food in the mouth), inadequate intake
of food and water is often thought to lead to distressing hunger, thirst, and
hastened death. Similarly, tube feeding is believed to prevent aspiration
pneumonia and other infections, improve function, promote physical comfort, and
prolong life. As was recently reviewed,19-21 evidence does not exist
to support (or refute) these assumptions. Data from the study reported here
suggest that tube feeding has no measurable influence on survival, at least in
this cohort of severely demented patients hospitalized with acute comorbid
illness. Multiple other observational studies have confirmed both high
short-term mortality rates and lack of survival advantage to tube feeding in
the context of advanced dementia.19-21, 53, 54
Limitations of this study include bias in the
sample related to its conduct in a tertiary care teaching hospital in New York
City. The high evidentiary standard for decisions to forego artificial
nutrition and hydration under New York state law55 could lead to a
higher prevalence of tube feeding among patients lacking decisional capacity
and advance directives. Other socioeconomic factors typical of patients cared
for in an urban teaching hospital may be associated with the lesser ability of
families to care for patients at home as well as limited availability of
long-term primary care physicians. However, frail nursing home patients with
advanced dementia are commonly transferred to acute care hospitals for
treatment of intercurrent illness27, 56 and the high risk of
feeding tube placement and mortality observed is consistent with data from a
wide range of clinical and geographic settings. Second, these data apply only
to persons with advanced dementia who have a surrogate decision maker able to
participate in medical decision making. The high proportion of otherwise
eligible subjects who could not be included in this study because they had no
functional surrogate decision maker represent a growing population of patients
for whom there is no current societal consensus on a mechanism for medical
decisions.41 There is,
however, no evidentiary basis to suggest that the group of patients with
dementia without surrogate decision makers is at any different risk of
gastrostomy or death than those who do have involved family members. Finally,
small sample size may have limited our ability to identify additional
predictors of feeding tube placement and mortality in this cohort.
In a cohort of hospitalized patients with acute
illness and advanced dementia, the risk of receiving a new feeding tube is
high. With or without tube feeding, these patients have a 50% six-month median
mortality, similar to that observed in a wide range of reports from other
clinical settings. These data have implications for the development of
evidence-based standards of medical care for the growing population of persons
with advanced dementia.
Author/Article Information
From the Department of Geriatrics and Adult Development, the Lilian and
Benjamin Hertzberg Palliative Care Institute, Mount Sinai School of Medicine
(Drs Meier and Morrison and Mss Morris and Baskin-Lyon), the Eileen E. Anderson
Section of Geriatrics, St Vincent's Hospital and Medical Center (Dr Ahronheim),
and the New York Medical College (Dr Ahronheim), New York, NY.
Corresponding author: Diane E. Meier, MD, Box 1070, Mount Sinai School of
Medicine, New York, NY 10029 (e-mail: [log in to unmask]).
Accepted for publication August 22, 2000.
This work was supported by grants from The
Greenwall Foundation, and The Kornfeld Foundation, New York, NY. Dr Meier is
the recipient of the National Institute on Aging Academic Career Leadership
Award (K07AG00903). Dr Morrison is the recipient of a Mentored Clinical
Scientist Development Award (K08AG00833) from the National Institute on Aging,
Bethesda, Md.
Drs Meier, Morrison, and Ahronheim and Ms Morris
are Open Society Institute Faculty Scholars of the Project on Death in America,
New York. Dr Morrison is a Brookdale National Fellow.
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