High Short-term Mortality in Hospitalized Patients With Advanced Dementia

Lack of Benefit of Tube Feeding

Author Information
<http://archinte.ama-assn.org/issues/v161n4/rfull/#aainfo>   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
IOI00427
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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r1> , 2
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r2>  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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r2>
While the setting and type of care provided to persons with advanced
dementia and acute superimposed illness is highly variable, 3-13
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r3>  hospitalization is a
frequent sequela of acute illness in advanced dementia. 3
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r3>  This practice occurs
despite the fact that hospitalization is a known hazard for frail elderly
persons 14 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r14> , 15
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r15>  and its use in
advanced dementia has not been demonstrated to improve clinical outcomes.
16-18 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r16>  Similarly,
the characteristics and predictors of decisions to use a feeding tube when
oral intake declines are not well described. 19
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r19> , 20
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r20>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r20> , 21
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r21>  placement of a
feeding tube is a common intervention in this population. 22-24
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r22>
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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r12> , 25
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r25>  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.



SUBJECTS AND METHODS



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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r26>  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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r26>
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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r12> , 25
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r25>  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 intervention 25
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r25>  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
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t1.html> ). 12
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r12>  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 chi2 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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r27>  randomization
status, and presence of a feeding tube were entered into the final survival
model.



RESULTS



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 <http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t1.html> ).
12 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r12>  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
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t2.html> . 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
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t3.html> . 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
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_f1.html> ). The
hazard model is given in Table 4
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t4.html> .
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
<http://archinte.ama-assn.org/issues/v161n4/fig_tab/ioi00427_t4.html> ).



COMMENT



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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r33>  long-term care, 34
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r34>  and hospice 35
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r35>  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 sepsis 36
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r36> , 37
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r37>  and some metastatic
cancers. 38 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r38>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r39> , 40
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r40>
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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r3>
Propensity to hospitalize has been shown to be related both to clinical
factors 3 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r3> , 5-7
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r5> , 9
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r9> , 10
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r10>  and to the number
of hospital beds per capita. 4
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r4>  As we have
previously reported, 12
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r12>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r5> , 6
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r6> , 8
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r8> , 10-12
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r10> , 41
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r41>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r42>  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 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r23>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r43>  the economic
hardship associated with care of a relative with chronic advanced illness
44-46 <http://archinte.ama-assn.org/issues/v161n4/rfull/#r44>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r47>
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 painful 51
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r51>  and the common
observation of aversive feeding behaviors in advanced dementia 52
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r52>  (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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r19>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r19> , 53
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r53> , 54
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r54>
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 law 55
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r55>  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 illness 27
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r27> , 56
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r56>  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
<http://archinte.ama-assn.org/issues/v161n4/rfull/#r41>  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.



CONCLUSIONS



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]
<mailto:[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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Edward E. Rylander, M.D.
Diplomat American Board of Family Practice.
Diplomat American Board of Palliative Medicine.