Context Little is known about the prognosis of acutely ill patients with end-stage
dementia or about the type of care that these patients receive. If their prognosis
is poor, then emphasis should be placed on palliative care for these patients
rather than on curative interventions.
Objectives To examine survival for patients with end-stage dementia following hospitalization
for hip fracture or pneumonia and to compare their care with that of cognitively
intact older adults.
Design Prospective cohort study with 6 months of follow-up.
Setting and Patients Patients aged 70 years or older who were hospitalized with hip fracture
(cognitively intact, n=59; with end-stage dementia, n=38) or pneumonia (cognitively
intact, n=39; with end-stage dementia, n=80) in a large hospital in New York,
NY, between September 1, 1996, and March 1, 1998.
Main Outcome Measures Mortality, treatments directed at symptoms, and application of distressing
and painful procedures in cognitively intact patients vs those with end-stage
dementia.
Results Six-month mortality for patients with end-stage dementia and pneumonia
was 53% (95% confidence interval [CI], 41%-64%) compared with 13% (95% CI,
4%-27%) for cognitively intact patients (adjusted hazard ratio, 4.6; 95% CI,
1.8-11.8). Six-month mortality for patients with end-stage dementia and hip
fracture was 55% (95% CI, 42%-75%) compared with 12% (95% CI, 5%-24%) for
cognitively intact patients (adjusted hazard ratio, 5.8; 95% CI, 1.7-20.4).
Patients with end-stage dementia received as many burdensome procedures as
cognitively intact patients and only 8 (7%) of 118 patients with end-stage
dementia had a documented decision made to forego a life-sustaining treatment
other than cardiopulmonary resuscitation. Only 24% of patients with end-stage
dementia and hip fracture received a standing order for analgesics.
Conclusions In this study, patients with advanced dementia and hip fracture or pneumonia
had a very poor prognosis. Given the limited life expectancy of patients with
end-stage dementia following these illnesses and the burdens associated with
their treatment, increased attention should be focused on efforts to enhance
comfort in this patient population.
An estimated 1.8 million people in the United States are in the final
stages of a dementing illness (eg, Alzheimer disease, vascular dementia)1 and are unable to recognize family, dependent in activities
of daily living, unable to communicate, and experience repeated infections
and other complications. Despite the prevalence of advanced dementia, little
is known about the prognosis of patients with this condition who develop a
superimposed acute illness (eg, pneumonia). Preliminary data from nursing
homes and hospice care suggest that survival for patients with end-stage dementia
following febrile episodes is limited.2-5
Furthermore, if prognosis is poor, palliation of symptoms and enhancement
of comfort may be more important to the patient than the application of burdensome
interventions directed at life prolongation or cure.
This study was designed to examine 6-month survival for patients with
advanced dementia who were hospitalized for 2 common conditions (hip fracture
and pneumonia) and to compare the care these patients received with that of
cognitively intact adults with the same diagnoses. Hip fracture and pneumonia
serve as useful models for this study because they are common conditions in
elderly patients, are seen in both cognitively intact and advanced dementia
patients, and are associated with considerable pain and other symptoms.
Patients older than 70 years who were admitted to a large hospital in
New York, NY, with diagnoses of hip fracture or pneumonia from September 1,
1996, to March 1, 1998, were identified by a trained research assistant who
reviewed daily admission records. The study was approved by the Mount Sinai
School of Medicine Institutional Review Board and all patients or their surrogates
provided informed consent. Patients with hip fracture were eligible if they
had femoral neck or intertrochanteric fractures. Patients with pneumonia were
eligible if they had new infiltrate on chest radiograph and the presence of
at least 2 of the following: temperature greater than 38°C, new or increased
sputum production, new or increased cough, new pleuritic chest pain, and new
or increased pulmonary findings on physical examination; or 1 of the following
changes in status: new or increased shortness of breath, respiratory rate
greater than 25/min, and worsening mental or functional status.6
Patients were excluded if they had multiple internal injuries, a previous
fracture in the affected hip, or a known diagnosis of cancer that was not
considered cured or in remission; or were non–English-speaking or identified
more than 48 hours after admission. Patients with hip fracture or pneumonia
were eligible for inclusion if they were cognitively intact or had end-stage
dementia.
To identify cognitively intact patients, a research assistant with experience
in geriatric assessment administered the telephone version of the Mini-Mental
State Examination (MMSE) in person7 to all
potentially eligible patients. The telephone version of the MMSE was used
because it requires only verbal responses and, thus, is easier to complete
for frail, ill patients who may have difficulty writing or seeing the instrument.
Patients whose score was at least 18 of 24 (consistent with normal cognitive
function) were eligible for enrollment (cognitively intact group). Patients
whose score was less than 18 but who had delirium as determined by the Confusion
Assessment Method8 were reassessed daily for
2 subsequent days using the telephone version of the MMSE. Patients whose
score on the telephone MMSE was 18 or greater within this 2-day period were
included in the cognitively intact group. Patients who had delirium and whose
MMSE score was less than 18 were excluded, even if there was no reported history
of dementia, to ensure that patients with undiagnosed cognitive impairment
were not inadvertently included in the cognitively intact group. To identify
patients with end-stage dementia, we interviewed the next of kin of the remaining
patients (ie, those whose score on the telephone MMSE was less than 18) and
inquired about the patients' best functional and cognitive status for the
month prior to admission. Patients whose functional/cognitive status was classified
as stage 6 or 7 (severe to very severe dementia) on the Global Deterioration
Scale9 were enrolled in the end-stage dementia
group. Persons who have a stage 6 or 7 classification on the Global Deterioration
Scale are dependent in all activities of daily living (eg, bathing, dressing,
transfer, continence, feeding), display sleep-wake cycle disturbances, and
cannot remember the names of even close relatives or their spouse.
Patient Care and Survival
We collected information on the frequency of use of 9 common hospital
procedures that previously have been found to be moderately to severely painful
or uncomfortable: arterial blood gas measurement, central line placement,
indwelling bladder catheter insertion, insertion of intravenous catheter after
admission, use of mechanical restraints, use of nasogastric tube, daily phlebotomy
during more than 50% of hospital stay, use of intravenous catheter for entire
hospital stay, and mechanical ventilation other than for general anesthesia.10 Hospital charts were reviewed daily by a research
assistant for measures taken to assess and treat symptoms, discussions about
goals of hospital and posthospital care, and decisions to withhold or withdraw
life-sustaining treatments.
To evaluate reviewer bias and coding error, a second independent observer
evaluated 25 randomly selected charts and was 100% concordant with the primary
reviewer. Additional information about patient characteristics and demographics
was obtained by directly interviewing patients in the cognitively intact group
and by interviewing proxies of patients in the end-stage dementia group. Six-month
survival data were obtained by first crossmatching patients' medical records
with the hospital database to identify in-hospital deaths within 6 months
of the index admission (n=188), then performing a similar crossmatch for the
6-month to 1-year period following index admissions (ie, to document that
patients had survived after 6 months) (n=179). Following these database searches,
124 patients' status remained unknown. We reviewed New York City death certificates
for these 124 patients and identified 45 deaths. Finally, we made follow-up
telephone calls to the patient, proxy, or nursing home to which the patient
was discharged to determine the status of the remaining 79 patients.
χ2 Analyses and t tests were
used to compare patient characteristics and other variables. The Cox proportional
hazards regression model was used to examine survival. Variables were selected
by reviewing the literature and identifying risk factors that have been shown
to be associated with increased mortality in pneumonia and hip fracture. In
addition to these variables, we included in the models a cognitive status
variable (demented or nondemented) and age. Age was included because of the
significant differences in mean ages between cognitively intact and end-stage
dementia patients in both hip fracture and pneumonia groups. Variables entered
into the pneumonia model were age, cognitive status (cognitively intact or
with end-stage dementia), and a term that stratified patients into low and
high risk for death based on pneumonia severity. The pneumonia risk term was
derived by computing a severity score using a previously validated model that
assesses pneumonia severity and risk of death based on demographic variables,
coexisting conditions, and physical examination, radiological, and laboratory
findings.11 Scores were determined by summing
the points assigned for the following applicable characteristics (points in
parentheses) and the patient's age (age minus 10 for women): nursing home
resident (10); coexisting illness (neoplastic disease [30], liver disease
[20], congestive heart failure [10], cerebrovascular disease [10], renal disease
[10]); physical examination findings (altered mental status [20], respiratory
rate ≥30/min [20], systolic blood pressure <90 mm Hg [20], temperature
<35°C or ≥40°C [15], pulse ≥125/min [10]); and laboratory
and radiographic findings (arterial pH <7.35 [30], serum urea nitrogen
level ≥10.7 mmol/L [20], sodium level <130 mmol/L [20], glucose level ≥13.9
mmol/L [250 mg/dL] [10], hematocrit <0.30 [10], partial pressure of oxygen
<60 mm Hg [10], and pleural effusion [10]). Patients with scores greater
than 90 were considered to be at increased risk for death and a dichotomous
variable (severity score >90) was entered into the pneumonia hazard model.
For the hip fracture model, in addition to age and cognitive status,
we included variables that have been found in other studies12-15
to be associated with increased mortality following hip fracture. The variables
included comorbid illness (Charlson comorbidity index), nursing home residence
prior to hospitalization, and ambulatory status.
Five hundred seven patients were initially identified from admission
records and 235 met entry criteria (126/306 with pneumonia and 109/201 with
hip fracture). Reasons for excluding 291 patients are as follows (numbers
listed as pneumonia/hip fracture): incorrect admitting diagnosis (75/11),
did not speak English (38/20), length of stay >48 hours before interview (5/4),
could not communicate (1/2), delirium (6/10), and mild-to-moderate dementia
(55/45). Of the 235 eligible patients, 216 patients or their proxies agreed
to participate (119 [94%] of 126 with pneumonia and 97 [89%] of 109 with hip
fracture).
Patient characteristics are shown in Table 1. Median age was 84 years (range, 71-100 years) for hip fracture
patients and 86 years (range, 71-102 years) for pneumonia patients. Most patients
were women (81% of hip fracture and 61% of pneumonia patients). End-stage
dementia patients with hip fracture or pneumonia were 6 and 4 years older,
respectively, than cognitively intact patients. Dementia patients were more
likely to reside in nursing homes (82% vs 5% with hip fracture and 63% vs
5% with pneumonia).
Figure 1 shows Kaplan-Meier
survival curves for pneumonia and hip fracture patients. Table 2 shows the results of the proportional hazards model. At
6 months, 42 (53%; 95% confidence interval [CI], 41%-64%) of 80 pneumonia
patients with end-stage dementia had died compared with 5 (13%; 95% CI, 4%-27%)
of 39 cognitively intact patients (adjusted hazard ratio, 4.6; 95% CI, 1.8-11.8).
Twenty-one (55%; 95% CI, 42%-75%) of 38 hip fracture patients with end-stage
dementia died within 6 months of hospitalization compared with 7 (12%; 95%
CI, 5%-24%) of 59 cognitively intact hip fracture patients (adjusted hazard
ratio, 5.8; 95% CI, 1.7-20.4). Thirty-four (54%) of 63 end-stage dementia
patients who died were readmitted to the study hospital within 6 months of
their index hospitalization compared with 7 (58%) of 12 cognitively intact
patients who died. Additional factors associated with decreased survival among
hip fracture patients included a high Charlson comorbidity index score and
being unable to walk or transfer without total assistance. Pneumonia patients
with a high pneumonia severity score were also at increased risk for death.
All patients with pneumonia received intravenous antibiotics; patients with
end-stage dementia were significantly more likely to receive a third-generation
cephalosporin or antipseudomonal penicillin (43% vs 13%; P=.009). A decision was made to withdraw antibiotics in 2 end-stage
dementia patients with pneumonia.
Patient Care and Procedure Use
The frequency of use of 9 common procedures that have been shown to
be moderately to severely painful or uncomfortable is shown in Table 3. There were no significant differences in the number of
burdensome procedures received by end-stage dementia and cognitively intact
patients, and end-stage dementia patients were significantly more likely to
be restrained. Additionally, hip fracture patients with end-stage dementia
received a mean of 1.7 mg/d of morphine sulfate equivalents compared with
4.1 mg/d for cognitively intact patients (P<.001)
and no end-stage dementia patients received premedication prior to being turned,
transferred, or repositioned. Furthermore, only 9 (24%) of 38 hip fracture
patients with end-stage dementia—who often are unable to communicate
the presence of pain or need for analgesia—received a standing order
for analgesics (including acetaminophen or nonsteroidal anti-inflammatory
drugs).
Finally, no documentation was found of any discussions about goals of
care, including decisions to withhold or withdraw life-sustaining treatment
(including antibiotics) for 106 (90%) of 118 end-stage dementia patients.
Two patients with end-stage dementia (1 with hip fracture and 1 with pneumonia)
were discharged to a nursing home with hospice at the initiative of a hospital
social worker. Decisions were made to forgo life-prolonging therapies other
than cardiopulmonary resuscitation for 8 end-stage dementia patients (7%)
compared with 1 cognitively intact patient (1%). The decision to withhold
these life-prolonging therapies was made when patients either were comatose
or were hypotensive in the setting of multisystem organ failure and death
appeared imminent.
This study found high 6-month mortality for patients with end-stage
dementia following hospitalization for pneumonia (53%) or hip fracture (55%)
compared with cognitively intact patients with the same conditions. Despite
this high mortality, we observed almost no differences in the care that end-stage
dementia patients received compared with cognitively intact adults and no
evidence that palliative care was undertaken either in conjunction with or
instead of life-prolonging measures for dementia patients. For example, treatment
plans in end-stage dementia patients did not address the high symptom burdens
associated with these 2 conditions (eg, we found no evidence of morphine use
to treat dyspnea or efforts to premedicate patients prior to painful interventions
such as transferring from bed to chair). Also, there did not appear to be
consideration of limiting burdensome interventions (eg, arterial blood gas
measurement, phlebotomy, urinary catheter insertion) in patients with end-stage
dementia. No palliative care plans (eg, opting to focus measures on enhancing
and promoting comfort rather than life prolongation or cure) were identified;
few discussions with families about the goals of hospital care, implementing
a palliative care plan, or discharging a patient to hospice were noted; and
few decisions to forgo life-sustaining therapy were made. These data suggest
that advanced dementia is not viewed as a terminal diagnosis by physicians
or families, perhaps because physicians and families may not be aware of the
poor short-term prognosis for these patients.
Previous studies examining prognosis in dementing illnesses have been
confined to patients with mild-to-moderate dementia16-21
and those in nursing homes and hospice care.2-5
This study is the first to examine survival following hospitalization for
2 common illnesses in this population. Our data suggest that pneumonia severe
enough to warrant hospitalization in end-stage dementia is associated with
a limited 6-month prognosis, even following treatment with antibiotics and
other life-prolonging therapies and controlling for pneumonia severity.
Survival data following hip fracture for patients with advanced cognitive
impairment are even more limited than those available for pneumonia because
most hip fracture studies either have excluded nursing home residents or have
not specifically reported mortality for advanced dementia patients.12,22,23 Our study suggests
that hip fracture is a catastrophic event for patients with advanced dementia
and is associated with a low initial in-hospital mortality (5%) but a high
6-month mortality (55%). Whether hip fracture directly increases the risk
of death or is a marker for increased frailty and higher probability of developing
a fatal medical complication has yet to be determined.
There are several limitations to this study that should be noted. First,
this study was undertaken at 1 hospital and the results may not be generalizable
to other institutions in other settings. Second, it is possible that surrogates
of end-stage dementia patients opted for a palliative approach for their relatives
the next time they became ill, which may have resulted in an overall higher
mortality rate than if they had received life-prolonging therapy. Fifty-four
percent of the end-stage dementia patients who died were readmitted to our
acute care hospital within 6 months of their index hospitalization compared
with 58% of cognitively intact patients who died, suggesting no difference
in whether cognitively intact or end-stage dementia patients were to be rehospitalized
when acutely ill. Third, this study was undertaken in New York State, where
a health care proxy or clear and convincing evidence of a patient's wishes
is required to withhold or withdraw life-sustaining therapy. Sixty percent
of hip fracture patients with end-stage dementia and 70% of pneumonia patients
with end-stage dementia did not have an advance directive. There were, however,
no significant differences in decisions to withhold or withdraw care between
patients with and without an advance directive, and advance directives were
not significantly associated with survival in univariate analyses for either
hip fracture or pneumonia. Again, these data suggest that advanced dementia
with superimposed pneumonia or hip fracture may not be viewed as a terminal
diagnosis by physicians or families. Fourth, we relied on medical record review
to determine whether conversations about the goals of care occurred between
families of end-stage dementia patients and physicians. It is possible that
such discussions occurred and that physicians failed to document these conversations
when families opted for standard medical therapies. Finally, this study excluded
end-stage dementia patients with pneumonia or hip fracture for whom a decision
was made not to admit to the hospital and excluded patients with cancer. Thus,
our survival rates for end-stage dementia patients may be higher than might
be expected if all end-stage dementia patients were included.
In summary, we found that end-stage dementia patients who received routine
hospital care for pneumonia or hip fracture had a 4-fold increase in 6-month
mortality compared with elderly cognitively intact adults with the same diagnoses
(53% vs 13% for pneumonia patients and 55% vs 12% for hip fracture patients)
and had survival rates similar to patients hospitalized with chronic end-stage
liver disease, multiorgan system failure with sepsis, and some metastatic
cancers.24,25 This study cannot
determine whether acute hospital care prolongs survival in end-stage dementia
patients with pneumonia or hip fracture, and further studies are needed to
help clinicians identify those patients whose survival might be prolonged.
Given the burdens of treatment associated with pneumonia and hip fracture
that we have identified in this study—burdens that probably are greater
in individuals with dementia because they cannot understand the reasons for
tests or treatments, prepare for them emotionally, refuse them if desired,
or request analgesia—and the high mortality observed following these
illnesses, we believe that increased attention needs to be directed to relieving
pain and other distressing symptoms and minimizing burdensome interventions
in hospitalized end-stage dementia patients. Furthermore, given the high probability
of death following pneumonia or hip fracture in the setting of end-stage dementia,
we encourage physicians to initiate discussions with patients' surrogates
about achievable goals for medical care and establish treatment plans consistent
with these goals to minimize preventable pain and discomfort for these patients.
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