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Patients' Ratings of Quality and Satisfaction With Care at the End of Life
Daniel P. Sulmasy, OFM, MD, PhD;
Jessica M. McIlvane, PhD
Arch Intern Med. 2002;162:2098-2104.
ABSTRACT
Objective To elicit ratings of quality and satisfaction with care from medical
inpatients, especially those near the end of life.
Methods We conducted a cross-sectional survey of 84 seriously ill medical inpatients
at 2 academic medical centers. Forty-five had do-not-resuscitate orders. Patients
were interviewed using a valid and reliable instrument, the Quality of End-of-Life
Care and Satisfaction With Treatment scale (scored from 1.0-5.0) and standard
measures of symptoms, anxiety, depression, and delirium.
Results Mean patient ratings of quality of care were higher regarding physicians
than nurses (4.39 vs 4.24; P = .01). Mean patient
ratings of satisfaction with physicians were also higher, but not significantly
(4.53 vs 4.43; P = .32). In analysis of variance
models, patient ratings of physician quality were lowest for patients with
do-not-resuscitate orders who were treated by a house-staff service compared
with other patients (P = .01). These patients were
also least satisfied with their physicians (P = .03).
Nondepressed patients with private attending physicians rated nursing quality
the highest (P = .16). These patients also reported
the highest satisfaction with nurses (P = .002).
Quality and satisfaction were not related to severity of illness, and pain
was only weakly associated with satisfaction with physicians.
Conclusions Patients with do-not-resuscitate orders who were treated by a house-staff
service gave the lowest ratings of physician quality and satisfaction. Only
private patients who were not depressed were highly satisfied with their nursing
care. Further study is required to better understand these findings and whether
they are amenable to quality improvement.
INTRODUCTION
SEVERAL STUDIES1-4 have
reported on the quality of care patients receive at the end of life, but little
has been reported regarding dying patients' own assessments of quality or
satisfaction with their care. Assessing patients' views seems especially important
at the end of life, since morbidity, mortality, functional status, and other
standard measures of quality become less helpful, whereas other measures such
as symptom burden,5 quality of life, satisfaction,
and the interpersonal aspects of quality assume greater significance.6 Because of alterations in alertness, dyspnea, and
other factors, interviewing patients at the end of life can be difficult.
However, the direct reports of patients are extremely valuable, since several
studies have reported divergence between the reports of patients regarding
their care and the reports of their family members or other surrogates.7-8
We have drawn on this previous work and that of Matthews et al9 and Matthews and Feinstein10 by
adapting some of their patient survey questions to the end-of-life setting
and to the rating by patients of nurses as well as physicians. We have called
this instrument QUEST (the Quality of End-of-Life Care and Satisfaction With
Treatment scale), and have shown in preliminary studies that it is valid and
reliable.8 We herein report on the administration
of this instrument, with a battery of other standardized questionnaires, to
hospitalized medical patients with serious and complex illness,11 and
assess the clinical and sociodemographic factors associated with patients'
responses. In particular, we focused on patients with do-not-resuscitate (DNR)
orders, because these patients are very likely to die in the hospital,12-13 and compared their responses with
those of other seriously ill patients who are less likely to be imminently
close to death.
PATIENTS AND METHODS
PATIENTS
Study participants included 84 medical inpatients from 2 urban teaching
hospitals (Georgetown University Medical Center, Washington, DC, and St Vincent
Catholic Medical Centers, St Vincent's Manhattan, New York, NY). This sample
was drawn from a larger study of 257 hospitalized patients. We selected only
those patients who gave interviews, since we have shown that surrogate reports
do not match those of patients.8 Just more
than half of the patients had DNR orders (n = 45). Hospitalized patients without
DNR orders were included if they had had any serious (usually fatal) chronic
illness with complex care needs,11 including
malignancy, human immunodeficiency virus/acquired immunodeficiency syndrome,
coronary heart disease, congestive heart failure, chronic obstructive pulmonary
disease, cerebrovascular disease, neurodegenerative disease, lupus, cirrhosis,
and others. We interviewed English-speaking patients at Georgetown, and English-
or Spanish-speaking patients at St Vincent's. The Spanish-language version
was verified by means of back-translation. Patients were not interviewed if
the staff deemed that they lacked decision-making capacity or were younger
than 18 years. Patient interviews were also excluded from the analysis for
low Reduced-Set Mini-Mental State Examination scores14 or
excluded due to the presence of delirium according to the Confusion Assessment
Method.15 The study was approved by the institutional
review boards of both institutions, and all participating patients and surrogates
gave informed consent.
PROCEDURES
Face-to-face structured interviews were conducted with patients to assess
the quality of and their satisfaction with the care received from physicians
and nurses and their symptoms, mental status, depression, anxiety, and sociodemographic
information. Medical chart reviews were performed to assess severity of illness
and to obtain other clinical information.
QUEST Quality and Satisfaction Scales
The previously validated and reliable 30-item QUEST scale8 was
used to measure patients' perceptions of quality of care and satisfaction
with their physicians and nurses. The QUEST scales were based on items derived
from the previous work of Matthews et al9 and
Matthews and Feinstein,10 who had developed
instruments to elicit patients' appraisals of physician performance. The QUEST
scale transformed these items into 4 subscales, including quality of care
from physicians, quality of care from nurses, satisfaction with physicians,
and satisfaction with nurses. The quality-of-care subscales consist of 9 items,
rated on a 5-point Likert scale ranging from never to always, with possible
mean scale scores from 1.0 to 5.0. Patients rated the physicians as a whole
and the nurses as a whole rather than individual physicians or nurses. Patients
were asked how frequently their physicians and nurses performed a variety
of behaviors including "spent enough time with you," "arrived late," "been
hard to reach," "seemed distracted," "willing to listen," "treated you as
a disease," "showed personal concern," "ignored your feelings," and "responded
quickly." The satisfaction subscales consist of 6 items, rated on a 5-point
Likert scale ranging from very dissatisfied to very satisfied, with possible
mean scale scores from 1.0 to 5.0. Patients were asked how satisfied they
were with the behavior of their physicians and nurses, including "bedside
manner," "common courtesy," "way of talking," "clinical and technical skills,"
"concern," and "overall" level of satisfaction. The QUEST scales demonstrated
good internal reliability, with Cronbach  values ranging from 0.83
to 0.95 for the 4 subscales.
Symptom Severity Scale
We used a 9-item symptom severity scale to assess a variety of symptoms
including shortness of breath, pain, restlessness, nausea, constipation, feverishness,
fecal incontinence, urinary incontinence, and dry mouth. Items were rated
on a 4-point scale ranging from absent to severe.
Anxiety and Depression
We used the 14-item Hospital Anxiety and Depression Scale to assess
emotional distress.16 Responses were on a 4-point
scale. Anxiety and depression scores can each range from 0 to 21.
Other Measures
Other measures were used, including the Reduced-Set Mini-Mental State
Examination14 and the interviewer's rating
of the patient's degree of delirium using the Confusion Assessment Method.15 We reviewed medical charts to obtain demographic
information, APACHE (Acute Physiology and Chronic Health Evaluation) III severity
of illness scores,17 and information regarding
insurance, type of physician, and advance directives.
DATA ANALYSIS
The QUEST scores were positively skewed, and therefore the data were
rank transformed to perform parametric testing.18 Bivariate
associations were examined between the 4 QUEST subscales and the following
patient characteristics and clinical variables: sex, ethnicity, diagnosis,
DNR status, anxiety, depression, severity of illness, symptoms, religion,
religious participation, type of insurance, type of attending physician, and
the presence of a living will or a health-care power of attorney (proxy).
We examined these bivariate associations using t tests,
correlations, and 1-way analyses of variance (ANOVAs). We selected any variables
found to be at least marginally significant (P<.10)
for testing in multivariate analyses. Because we found interactions between
DNR status and the type of attending physician as well as depression and type
of attending physician, we constructed ANOVA models as the most simple and
straightforward means of presenting these data. To do so, we dichotomized
depression scores into depressed vs nondepressed according to the prescribed
cutoff score of at least 11 on the Hospital Anxiety and Depression Scale.16
RESULTS
PATIENTS
Of the 367 cases in which we could approach a patient or a surrogate,
110 (30%) refused. Of the 257 interviews with a patient or a surrogate, 88
were with patients. Four of these were excluded because of low Reduced-Set
Mini-Mental State Examination scores, yielding 84 patients for this analysis.
Table 1 lists the characteristics
of these 84 study patients. Fifty (60%) were men. Race was not recorded for
2 patients; of the remainder, 58 (71%) were white and 24 (29%) were African
American, Latino, or Asian. Patients ranged in age from 27 to 101 years, and
the average age was 59.8 years. Patients had a wide variety of diagnoses,
including advanced cardiac, pulmonary, and neurological conditions; malignancy;
and human immunodeficiency virus/acquired immunodeficiency syndrome.
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Table 1. Patient Characteristics*
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PATIENT RATINGS OF QUALITY AND SATISFACTION
As is commonly the case with scales of satisfaction and quality, we
found a substantial skew toward more positive ratings of physicians and nurses.
On a scale of 1.0 to 5.0, the mean QUEST rating for quality of physician care
was 4.39, whereas the mean QUEST rating for quality of nursing care was 4.24
(P = .01). The mean QUEST rating for satisfaction
with physicians was 4.53, whereas the mean QUEST rating for satisfaction with
nurses was 4.44. This difference in satisfaction ratings was not significant
(P = .32).
BIVARIATE ASSOCIATIONS
In exploring bivariate associations between the QUEST scores and multiple
clinical and sociodemographic characteristics of patients, consistent associations
or trends were apparent for only a few variables, as presented in Table 2. Having a DNR order and being treated
by a house-staff service rather than a private attending physician were each
significantly associated with lower ratings of quality and satisfaction for
physicians and nurses. Higher anxiety and depression scores were also associated
with lower quality and satisfaction ratings, although statistical significance
was reached in only 3 of the 4 QUEST scales for depression and only 2 of the
4 QUEST scales for anxiety. Higher pain scores showed a trend toward association
with lower QUEST scales, but this factor only reached statistical significance
for the physician satisfaction QUEST score. Severity of illness, as measured
by the APACHE III acute physiology score, was not associated with QUEST scores.
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Table 2. Associations Between Individual Patient Characteristics and
QUEST Scores*
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MULTIVARIATE ASSOCIATIONS
Table 3 shows ANOVA models
of factors associated with QUEST scores. Patient ratings of physician quality
of care were significantly lower for patients with DNR orders who were treated
by a house-staff service compared with all other patients. Having a DNR order
per se and being treated by a house-staff service per se were not associated
with lower QUEST scores for physician quality.
In the multivariate ANOVA model for patient ratings of their satisfaction
with physicians, greater pain tended to be associated with lower satisfaction
with physicians, but this association was not statistically significant. However,
the interaction between DNR status and treatment by a house-staff service
vs a private attending physician was once again significant. Private patients
without DNR orders reported the highest satisfaction, whereas service patients
with DNR orders reported the lowest.
Although the findings of the ANOVA model for factors associated with
patient QUEST scores for nursing quality were not significant, we found a
trend for ratings to be highest for private patients who were not depressed,
as measured by the Hospital Anxiety and Depression Scale.
The ANOVA model for factors associated with patient QUEST scores for
satisfaction with nurses showed very high ratings of satisfaction with nurses
by private patients who were not depressed, compared with all other patients.
SURROGATE RATINGS
Although our validity studies showed that surrogate QUEST ratings did
not accurately reflect patient QUEST ratings,8 we
nonetheless calculated surrogate QUEST scores for general comparison with
the 84 patients who were interviewed in the present study. Interviewed surrogates
(n = 195) were mostly family members (21% spouses, 32% children, 33% other
relatives, and 15% nonfamily surrogates). The mean surrogate QUEST scores
were 4.31 for physician quality, 4.37 for nursing quality, 4.43 for satisfaction
with physicians, and 4.42 for satisfaction with nurses.
COMMENT
This study contributes to understanding care at the end of life by asking
seriously ill hospitalized patients to rate the quality of their health care
and their satisfaction with that care using instruments modified and refined
to capture features that patients facing the end of life consider significant.
Most available instruments to measure patients' perceptions of quality and
satisfaction with care have been developed for contexts other than the end
of life.19 However, some progress is being
made. For example, Wenger at al20 are developing
measures that can be used in large administrative databases. The Study to
Understand Prognoses and Preferences for Outcomes and Risks of Treatments
interviewed family members about satisfaction after the patient's death using
2 unvalidated 4-item scales.21 Tolle at al22 interviewed surviving family members many months
after patients' deaths. However, the retrospective views of the family are
quite limited. We do not know how grief, recall effects, and the need for
closure may affect the surrogates' after-death responses.23 Furthermore,
the satisfaction of the family cannot be assumed to represent the satisfaction
of the patient.24-25 Other investigators
have concentrated on patients in hospice settings, not in hospitals.26 None have attempted to distinguish patient ratings
of satisfaction from patient ratings of quality. Our instrument is also unique
in that it emphasizes the interpersonal aspects of care, an element that is
especially important to patients at the end of life.27
DIFFERENCES BETWEEN PHYSICIANS AND NURSES
Our finding that patients rated physicians more highly than nurses is
unusual. Although comparisons of patient ratings of physicians and nurses
in the same clinical episode are rare, studies in outpatient settings and
in emergency departments have suggested higher ratings for nurses.28-30 It is unclear whether
staffing levels31 or other factors more specific
to end-of-life care in the hospital might play a role. In a study of a surgical
ward, a lack of registered nurses during night shifts was associated with
lower overall patient satisfaction.32
PATIENT RATINGS OF PHYSICIAN QUALITY AND SATISFACTION
Although DNR orders and being cared for by the house-staff service were
independently associated with lower ratings of physician quality and less
satisfaction with physician care, we found an important interaction. Patients
who had DNR orders and were treated by the house-staff service gave their
physicians especially low quality ratings compared with all other patients.
Why the combination of being a patient of the house-staff service and having
a DNR order is associated with lower ratings of quality is uncertain. Patients
with DNR orders are very likely to die in the hospital.12-13 Some
observers have suggested that physicians simply lose interest in dying patients,33 and patients with DNR orders are likely to be the
victims of this lack of interest. Others apparently believe that patients
with DNR orders are abandoned by the staff,34 and
this belief might explain these differences. However, a recent study failed
to demonstrate any decrease in the time spent by residents or other staff
in the rooms of patients with DNR orders compared with patients without DNR
orders.35 These findings do not preclude more
subtle differences in quality of care that patients might be able to observe.
However, our data suggest that if differences in quality of care between patients
with and without DNR orders exist, these differences are only apparent in
the house-staff service, since private patients with and without DNR orders
gave equivalent QUEST scores to their physicians.
Results of previous studies comparing the satisfaction of patients treated
by house-staff services compared with those treated by private services have
been mixed. Wells et al36 failed to show any
differences between patients cared for by private attending physicians and
those cared for by a house-staff service. However Yarnold et a37 found
more negative ratings of satisfaction with care at an academic hospital compared
with a community hospital. Perhaps a long-term relationship with a private
physician mitigates the loss of interest or other factors that decrease the
quality of interpersonal care patients with DNR orders otherwise receive.
PATIENT RATINGS OF NURSING QUALITY AND SATISFACTION
Although depression and treatment by the house-staff service were associated
with lower ratings of the quality of nursing care and satisfaction with nursing
care, we also found an important interaction between depression and type of
attending physician. Only findings for the model for satisfaction with care
were significant, but both models show the same trend, ie, patients with private
attending physicians who were not depressed showed high levels of satisfaction
with nursing care compared with all other patients.
Satisfaction is a highly complex phenomenon, involving patient expectations
and staff behavior.38 The mode of delivery
of patient care (house-staff service vs private attending physician) was important
in our nursing and physician models. Perhaps the best explanation might be
that having a private attending physician was associated with higher ratings
of quality and satisfaction with nursing services, but that this effect was
eradicated if the patient was depressed. Further explanation is not possible,
given these data.
Previous studies have suggested that most variance in patient satisfaction
actually depends on the patient, not the practitioner or the health care environment.39 Patients with private attending physicians tend to
have a higher socioeconomic status, but, ironically, this makes them harder
to please.38 Depression might also change a
patient's outlook and expectations, but no consistent correlations between
depression and satisfaction in the acute39-40 or
the chronic41 care settings have been made.
LACK OF CORRELATION BETWEEN QUEST FINDINGS AND THE PATIENT'S MEDICAL
CONDITION
Although we found a trend for quality and satisfaction ratings to correlate
negatively with the level of pain, this association was only significant for
satisfaction with physicians on the QUEST scales. This association was no
longer significant in a multivariate ANOVA that also controlled for DNR status
and house-staff vs private care. Our sample size was too small to detect a
possible weak association between symptoms and satisfaction. One might speculate
that, if it exists, this association should hold only for satisfaction with
physicians, not nurses, since physicians write the orders. However, it has
been difficult to show a consistent correlation between pain and satisfaction.42 Some have speculated that patients have low expectations
for pain control, or that satisfaction has far more to do with the quality
of interpersonal interactions with staff than the technical correctness of
the care rendered.
Severity of illness was also uncorrelated with quality or satisfaction
in our study. Quality of life has been shown in acute care settings to correlate
with severity of illness,43-44 but
this has not been true in end-of life care, where quality of life can be high
despite severe illness.45 We are unaware of
studies that have directly measured satisfaction with care and severity of
illness at the end of life, but can only speculate that patient ratings of
quality and satisfaction with care might similarly be high once it is clear
that the medical condition cannot be reversed and that death is drawing near.
PATIENT AND FAMILY RATINGS
Overall, surrogate ratings were not very different from patient ratings,
with the possible exception that patients tended to give somewhat lower ratings
of the quality of nursing care. Since we have previously demonstrated that
surrogate QUEST ratings do not validly represent the ratings of the patients,8 one must be very cautious in drawing any conclusions
from the QUEST scores of the surrogates.
LIMITATIONS
Our findings are observational and should be considered preliminary.
Our sample size is relatively small, but our data are drawn from 2 institutions.
The QUEST instrument is newly adapted for measuring quality and satisfaction,
but it has undergone substantial testing of reliability and validity. Our
ability to detect differences in QUEST scores for patients with and without
DNR orders and between patients treated by house-staff services and private
physicians suggests that the scale is sensitive to differences in quality
and satisfaction. However, the instrument's sensitivity has not yet been established
in prospective interventional studies. Also, patient ratings of quality and
satisfaction, although extremely important, are meant to complement other
quality measures such as symptom burden and process measures. The QUEST scale
should not be misconstrued as a global quality measure.
CONCLUSIONS
Patients' ratings of quality and satisfaction using the QUEST scale
vary according to multiple factors. Overall, physicians received higher ratings
than nurses. Both physicians and nurses received higher ratings by patients
with private attending physicians than by those treated by the house-staff
service. Depressed patients expressed more dissatisfaction with nursing care,
even those with private attending physicians. Finally, patients who were likely
to be very close to death, ie, those with DNR orders, were more likely to
be dissatisfied with physician care and to rate the quality of their physicians
as low, particularly if treated by the house-staff service. Further study
will be required to determine whether these findings are generalizable and,
if so, whether they might be amenable to efforts to improve the quality of
end-of-life care.
AUTHOR INFORMATION
Accepted for publication March 20, 2002.
This study was supported by a Faculty Scholar's Award of the Open Society
Institute's Project on Death in America, New York (Dr Sulmasy), and by a generous
grant from the Altman Foundation, New York.
We thank Vic Tolentino, MPH, JD, Sr Grace Henke, SC, EdD, and Maike
Rahn, MA, for their assistance with this project.
Corresponding author: Daniel P. Sulmasy, OFM, MD, PhD, The John J.
Conley Department of Ethics, St Vincent Catholic Medical Centers, St Vincent's
Manhattan, 153 W 11th St, New York, NY 10011 (e-mail: daniel_sulmasy{at}nymc.edu).
From the John J. Conley Department of Ethics, St Vincent Catholic Medical
Centers, St Vincent's Manhattan, New York, NY (Drs Sulmasy and McIlvane),
and the Bioethics Institute of New York Medical College, Valhalla, NY (Dr
Sulmasy).
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