Circumstances of Death in Hospitalized Patients and Nurses

Transcription

Circumstances of Death in Hospitalized Patients and Nurses
ORIGINAL INVESTIGATION
Circumstances of Death in Hospitalized Patients
and Nurses’ Perceptions
French Multicenter Mort-a-l’Hôpital Survey
Edouard Ferrand, PhD; Patricia Jabre, MD; Claire Vincent-Genod, MA; Régis Aubry, MD; Michel Badet, MD;
Philippe Badia, MD; Alain Cariou, MD; Françoise Ellien, MA; Valérie Gounant, MD; Roger Gil, PhD;
Samir Jaber, PhD; Sylvie Jay, MD; Elena Paillaud, MD; Philippe Poulain, MD; Bernard Regnier, PhD;
Jean Reignier, MD; Gérard Socie, PhD; Bernard Tardy, MD; François Lemaire, PhD;
Christian Brun-Buisson, PhD; Jean Marty, PhD; for the French Mort-a-l’Hôpital Group
Background: In developed countries at present, death
mostly occurs in hospitals, but the circumstances and factors associated with the quality of organization and care
surrounding death are not well described.
Methods: We designed a large multicenter cross-
sectional study to analyze the setting and clinical course
of each patient on the day of death. We included 2750
clinical departments of 294 hospitals. Of these, 1033 departments (37.6%) of 200 hospitals (68.0%) contributed to the Mort-a-l’Hôpital survey. Data were collected
prospectively by the bedside nurse of each patient within
10 days of the occurrence of death. Main outcome measures included circumstances of death in hospitalized patients; secondary outcomes, nurses’ perceptions of quality of end-of-life care.
Results: Of the 1033 participating departments, 420 recorded no deaths during the study period and 613 declared at least 1 death. In the 3793 patients who died and
were included for assessment, only 925 (24.4%) had loved
ones present at the time of death; 70.1% had respiratory
distress during the period before death; and only 12.0% were
in pain. Written protocols for end-of-life care were available in 12.2% of participating departments. Only 35.1% of
nurses judged the quality of dying and death acceptable for
themselves. Principal factors significantly associated with
this perception were availability of a written protocol for
end-of-life care, anticipation of death, informing the family, surrogate designation, adequate control of pain, presence of family or friends at the time of death, and staff meeting with the family after the death.
Conclusions: This large prospective study identifies non-
optimal circumstances of death for hospitalized patients and a number of suggestions for improvement. A
combination of factors reflected in the nurses’ satisfaction may improve the quality of end-of-life care.
Arch Intern Med. 2008;168(8):867-875
F
Author Affiliations are listed at
the end of this article.
Group Information: The 509
participants and 600
participating centers in the
French Mort-a-l’Hôpital Group
are listed on pages 873-874.
OR THE TERMINALLY ILL PAtient, returning home to die
has been suggested as a means
ofensuringapeacefulanddignified death in the company
of loved ones while providing pain control.
Nevertheless, most deaths now occur in hospitals on both sides of the Atlantic.1,2
In recent years, a reappraisal of treatment goals and patient rights has driven
major changes in the definition of what
could be termed “a good death,” which
now involves an experience that is as positive as possible for the patient and family. Work conducted in the United States
to uphold patients’ rights prompted the development of a number of recommendations.3-5 In France, where medical care is
often described as paternalistic, recommendations have been developed by
learned societies,6,7 prompted in part by
heated public debates and widely publi-
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
867
cized trials of physicians charged with hastening the deaths of terminally ill patients.8 Legislation passed in 1999 and
2002 now mandates that the rights of dying patients be upheld and that highquality end-of-life palliative care be provided and futile curative therapies be
withdrawn.9-11
Paradoxically, the circumstances surrounding the growing proportion of deaths
occurring in hospitals have received little
research attention.12 A few studies published during the past few years suggested
that recommendations were frequently ignored, staff members were not trained in
end-of-life issues, and markers for the quality of dying were not evaluated.12-17 However, most of these studies were conducted before the introduction of new
legislation in the relevant countries or focused on treatment limitation decisions in
the intensive care units (ICUs).16,18
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
We conducted a large multicenter cross-sectional study
of French hospitals, shortly after the introduction of the
new legislation, to investigate the circumstances in which
patients died and to evaluate factors associated with nurses’
perceptions of the quality of death.
METHODS
DEVELOPING THE
STUDY INSTRUMENT
First, we reviewed the literature for factors associated with quality of end-of-life care2,5,6,19-22 and used this information to develop a preliminary questionnaire, after conducting semidirective interviews with a panel of 8 bedside nurses and 4 physicians
working in the ICUs and wards of the 900-bed Henri Mondor
Hospital near Paris. The questionnaire explored markers for good
communication, quality of end-of-life care, traceability, and degree of satisfaction of the physician and nurse with the quality
of the death. The questionnaire was then field tested during a
4-week qualitative feasibility study in the surgical ICU. Finally, we conducted a quantitative feasibility assessment among
the staff members of 18 clinical departments in the same hospital, during which physicians and bedside nurses were asked
to describe the last death that had occurred in the department.
Of the 235 deaths described, 54 (3 in each department) were
retrospectively evaluated by the study investigators, who interviewed the staff members involved in the patients’ care and
reviewed the patients’ medical records and nurses’ logs.
The results of this preliminary phase showed that very few
physicians were able to describe the last hours of dying patients; indeed, the nurses reported that physicians were present
in 22 cases (9.4%). In addition, there was a substantial amount
of missing data for deaths that had occurred more than 10 days
before completion of the questionnaire.
The final instrument consisted of the following: (1) a description of the main characteristics of the department and of
the dying patient, including subjective assessment of the patient’s consciousness by the nurse during the corresponding
shift; (2) the reason for admission according to the senior physician, determined at admission; (3) the last hours preceding
the patient’s death, including information given by the medical staff about a death that was expected for at least 3 days or
during the corresponding shift, decisions about lifesustaining treatment before the time of death, information given
to the patient and family, changes in clinical course, analgesic
use, comfort care, and the presence of loved ones; (4) the information recorded at the time of death, including the level of
analgesia and presence of staff, loved ones, or a member of the
clergy; and (5) a subjective assessment by the nurses of the quality of the death, in particular in a positive response to the question “Do you feel that these circumstances would be acceptable for yourself?” The questionnaire (translated into English)
is available from the authors on request.
QUESTIONNAIRE ADMINISTRATION
Given the results of the preliminary study, the bedside nurse
was considered the most knowledgeable staff member regarding patient treatment and the wishes of the patient and family
at the time of death. Nurses were thus asked to complete the
questionnaire for the next death occurring within a 2-month
period. A single death was expected to be recorded by a given
nurse within each department. Data on the setting and clinical
course for each patient on the day of death were collected prospectively, and the questionnaire was to be completed and sent
back within 10 days of the death. Deaths described more than
10 days after they occurred were excluded from data analysis.
STUDY CENTERS
Among the 1000 public hospitals in France, we selected only
those that had an ICU. In January 2004, an invitation to participate in the study was sent to the heads and senior head nurses
of all clinical departments of the 294 French public hospitals
(85 teaching hospitals and 209 general hospitals). Reminders
for a reply were sent 2 and 4 weeks after the first invitation.
The centers agreeing to participate were sent the questionnaire to collect the main characteristics of the department, including their annual number of admissions and deaths, number of nurses, ratio of nurses to patients, and usual practice for
treatment of dying patients.
ETHICAL CONSIDERATIONS
The institutional review board of Henri Mondor Hospital approved the study. The questionnaire contained no information that identified the patient or the nurse. Informed consent
was waived for this anonymous observational questionnaire
survey.
STATISTICAL ANALYSIS
Data are reported as means (1 SD) or medians (25th-75th percentile range) for continuous variables and as percentages for
qualitative variables. Univariate associations were evaluated using
the Wilcoxon signed rank test for quantitative data and the ␹2
test for qualitative data or the Fisher exact test for groups with
low frequencies. All statistical tests were 2-tailed, and P ⬍.05
was considered significant. The odds ratios and respective 95%
confidence intervals were estimated separately for each variable using unconditional logistic regression models. A logistic
regression was performed. The dependent variable was perception of the death as acceptable to the nurses according to
self-report. Variables yielding P⬍.10 in the univariate analysis were considered for multivariate analysis and examined in
multiple 2⫻2 analyses to assess first-order interactions and confounding by fitting multiplicative models. A backward stepby-step procedure was used to enter the variables thus selected into a logistic regression model. Goodness of fit of the
model was assessed using the Hosmer-Lemeshow test. Statistical tests were performed using SAS statistical software (version 9.1.3; SAS Institute Inc, Cary, North Carolina).
RESULTS
PARTICIPATION
The 2750 clinical departments within the 294 hospitals
selected for participation were contacted directly. Of these
2750, 1517 (55.2%) initially agreed to participate; 1033
(37.6%) completed the survey, and 484 (31.9%) were secondarily excluded because of missing information on the
preliminary questionnaire (n=234), lack of availability
of the corresponding nurse to record the circumstances
of the last death (n=57), or inability to complete the survey because of organizational constraints (n=193).
Of the 1033 participating clinical departments, 420
recorded no death during the study period and 613 declared at least 1 death. These 613 departments were located in 200 hospitals (68.0% of the initial 294) distrib-
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
868
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
uted throughout France (92.0% of 100 French districts);
189 (30.8%) were housed in teaching hospitals and 424
(69.2%) in general public hospitals. A local palliative care
structure was available in 123 hospitals (61.5%).
Data were recorded on 3793 deaths, with a range of 5
to 20 per department. Approximately two-thirds of deaths
(2513 [66.3%]) occurred in the wards, including medical wards (1694 [44.7%]), surgical wards (407 [10.7%]),
geriatric wards (375 [9.9%]), and palliative care wards
(35 [0.9%]) (data were missing for 2 deaths that occurred in the wards). The remaining deaths occurred in
emergency departments (228 [6.0%]) or in ICUs (1052
[27.7%]). Specific written protocols for end-of-life decision making and care were available in only 75 departments (12.2%), but 991 of the deaths analyzed (26.1%)
occurred in these departments.
Table 1. Main Reasons for Admission and Main Underlying
Chronic Diseases for the 3793 In-Hospital Deaths
Patient Factors
Main reason for admission
Cardiovascular
Respiratory
Neurological
Infection
Hepatic
Hematological
End of life
Postoperative
Multiple injuries
Other
Underlying chronic disease a
Malignant neoplasm
Chronic respiratory failure
Chronic infectious disease
Congestive heart failure, NYHA class IV
Chronic renal failure
Chronic neurological disease
Cirrhosis
Hematological disorders
Severe psychiatric disease
Other
RESPONDENTS’ CHARACTERISTICS
The ratio of male to female responding nurses was 0.13,
and their mean age was 35 (9) years. The mean number
of patients in the charge of each respondent was 4 (2) in
the ICUs, 6 (3) in emergency departments, and 9 (2) in
the wards. Approximately two-fifths of the nurses
(n=1452 [38.3%]) had received 1 or more training sessions on end-of-life issues.
PATIENTS’ CHARACTERISTICS
The male to female ratio of the 3793 dying patients was
1.28 and their mean age was 68 (18) years. End of life
was the main reason for admission for 882 patients
(23.3%), and a malignant neoplasm was the most common chronic disease recorded (Table 1). Only 645 patients (17.0%) were institutionalized before hospital admission. Almost one-half of the patients (1881 [50.0%])
had been identified as terminally ill for at least 3 days before death (Table 2), and 1822 (48.0%) had not-to-beresuscitated (NTBR) orders; of these, most (1722 patients [45.4%]) also had decisions to withhold or withdraw
other treatments, which were recorded in their medical
record in 759 cases (44.1%). Almost one-third of patients (1128 [29.7%]) were conscious; only 249 (6.6%)
had expressed their wishes about no life-prolonging treatment and 544 (14.3%) had designated a surrogate decision maker, including 351 patients (18.7%) in whom
death was expected for at least 3 days (Table 2).
PRESENCE OF RELATIVES
AT THE TIME OF DYING
The staff members had met with at least 1 family member of the dying patient in most cases (3721 [98.1%]),
and the family had been informed in the preceding hours
that death was imminent (2613 [68.9%]). The nurse expected the patient to die during the corresponding shift
in 2809 cases (74.1%).
Slightly more than half of the patients (2032 [53.6%])
died during the day, between 7 AM and 7 PM. A family
member or relative was present at the time of the death
in only 925 of all cases (24.4%), and in 809 (43.0%) when
death was expected for at least 3 days (Table 2 and
Total, No. (%)
(n = 3793)
574 (15.1)
505 (13.3)
505 (13.3)
145 (3.8)
159 (4.2)
147 (3.9)
882 (23.3)
223 (5.9)
120 (3.2)
533 (14.1)
1092 (28.8)
621 (16.4)
467 (12.3)
428 (11.3)
305 (8.0)
294 (7.8)
225 (5.9)
220 (5.8)
102 (2.7)
500 (13.2)
Abbreviation: NYHA, New York Heart Association.
total is greater than 100% because some patients had more than 1
disorder.
a The
Table 3). In 612 cases (16.1%), no one was in the room
(Table 3). The bedside nurse was actually in the room at
the time of death in 1678 cases (44.2%), but rarely was
a physician present (770 cases [20.3%]) (Table 3). One
or more members of the health care team met with the
family after the death in 2798 cases (73.8%); in half of
all deaths (1903 [50.2%]), these meetings were conducted by the nurse alone.
SYMPTOMS AND END-OF-LIFE CARE
More than two-thirds of the patients (n=2659 [70.1%])
were described as having respiratory distress, but only
455 (12.0%) were considered in pain and the opioid dosage was increased for 336 patients (8.9%) within a few
hours before death. Overall, 1676 of all patients (44.2%)
received opioid analgesics as comfort treatment at the moment of death, including 1092 (58.1%) of those in whom
death was expected for at least 3 days (Table 2).
A palliative care consultation was considered for 638
patients (16.8%). It was actually provided to 460 patients (12.1%) (442 [17.6%,] 15 [1.4%], and 3 [1.3%]
patients dying in wards, ICUs, and emergency wards, respectively), including 381 patients (20.3%) of those in
whom death was anticipated for at least 3 days (Table 2).
Life-sustaining treatment was provided to 1214 patients (32.0%), including in 814 of deaths occurring in
ICUs (77.4%), 48 of those in emergency departments
(21.1%), and 352 of those in wards patients (14.0%). At
the time of death, resuscitation was attempted in 542 patients (14.3%), 98 (18.1%) of whom had NTBR or treatment-limitation orders.
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
869
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
of death (121 [5.4%]), major inappropriate care despite
an expectation of death (109 [4.9%]), and major physical suffering (98 [4.4%]).
Table 2. Principal Circumstances of Death
According to Its Anticipation a
Variable
Death
Expected
(n=1881)
Death Not
Expected
(n=1912)
Admission to the ICU c
336/1846 (18.2) 771/1827 (42.2)
No. of patients per nurse,
7 (3-10)
10 (6-10)
median (25th-75th
percentiles)
Designation by the patient
351 (18.7)
193 (10.1)
of a surrogate decision
maker
Patient’s wishes about
392 (20.8)
155 (8.1)
further treatment
documented
557 (29.6)
434 (22.7)
Written protocol for
end-of-life decision
making
Treatment limitation decision
1123 (59.7)
599 (31.3)
NTBR order
1179 (62.7)
643 (33.6)
No exacerbation of pain
266 (14.1)
206 (10.8)
before death
Analgesics used before death 1092 (58.1)
584 (30.5)
Family informed that death
1639 (87.1)
1339 (70.0)
was imminent
Presence of family or friends
567 (30.1)
358 (18.7)
at the time of death
Palliative care considered
530 (28.2)
108 (5.7)
by mobile unit
Palliative care provided by
381 (20.3)
79 (4.1)
mobile unit
Staff meeting with the family
1448 (77.0)
1350 (70.6)
after the death
Death judged acceptable
878 (46.7)
717 (37.5)
by nurses
COMMENT
P
Value b
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
.002
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
Abbreviations: ICU, intensive care unit; NTBR, not to be resuscitated.
a Indicates for at least 3 days. Unless otherwise indicated, data are expressed
as number (percentage) of patients.
b Calculated using the Wilcoxon signed rank test for quantitative variables and
␹2 test for qualitative variables.
c Data were missing for 120 patients.
QUALITY OF DEATH AS PERCEIVED
BY THE NURSES
The quality of the death was judged acceptable by nurses
in 1560 deaths (41.1%), and in 1332 (35.1%), the nurses
believed that it would be perceived as such by themselves or their own relatives. Variables significantly associated with the perception by the nurses of an acceptable death were the availability of a written protocol for
end-of-life care in the department, a higher ratio of nurses
to patients, anticipation of death by the nurse, designation by the patient of a surrogate decision maker, an NTBR
order or treatment-limitation decision recorded in the patient’s medical record, adequate control of pain before
death, information from the family that death was imminent, the presence of family or friends at the time of
death, and a staff meeting with the family after the death
(Table 4 and Table 5).
Among the most subjective reasons why nurses judged
the quality of the patient’s death as poor in 2233 cases
were the physical deterioration (267 cases [12.0%]), major moral suffering (167 [7.5%]), loneliness at the time
We conducted, to our knowledge, the largest study of the
organizational features of end-of-life care and circumstances surrounding death among hospitalized patients in
more than 600 hospital departments throughout France.
Our results show the common absence of loved ones at
the patient’s bedside, several markers of an insufficient palliative care approach at the time of death, and a high level
of dissatisfaction among nurses. The findings were only
marginally better when death had been anticipated.
The major finding of our study is the frequent failure
to adopt a palliative care approach at the time of death,
despite anticipation of death in 74.1% of patients and admission of approximately one-fourth (23.3%) for endof-life care. First, only one-fourth of the patients (24.4%)
had loved ones present at the time of death, and onefifth were left alone. Studies in ICUs have shown that the
presence of relatives at the time of death is associated with
the perception of a higher quality of end-of-life care.18,23
Second, although 70.1% of patients showed symptoms
of respiratory distress,4,17,24 only 44.2% received opiate
analgesics during the last few hours of life and only 12.1%
had a palliative care consultation. Although the patients
in our study were younger, more self-sufficient, and less
likely to have cancer compared with those in earlier studies,1,17 pain management in dying patients also varies
widely with physician-related factors, such as experience and individual characteristics.25,26 The blurred boundaries between advanced disease and end-of-life care, notably when the patient is not diagnosed as having a
terminal illness, may generate reluctance among staff
members to make the transition from curative to palliative care.27 In addition, staff members may fail to fully
appreciate the overall course of the patient and adapt the
level of care or to consider the patient’s and the family’s
views.27 In our study, 18.1% of patients underwent invasive resuscitation with NTBR or treatment limitation
orders. This could be explained by the insufficient spread
of a culture for shared decisions and of insufficient communication about palliative care, suggesting a need for
improved training of nursing staff in end-of-life care issues and of physicians on palliative care.28 Changes in
legislation and good clinical practices in this field receive minimal attention in the medical school curriculum in France.
That only 35.1% of nurses were satisfied with the quality of death of their patients is another important finding in our study. As confirmed in our study, nurses are
at the hub of end-of-life care because they are in a unique
position to interact with the patient, the family, and the
physicians.29,30 Failure to involve the nurse at all steps
of the patients’ treatment is often associated with nurse
dissatisfaction.15,18,31 Other factors may include a high ratio of patients to nurses. Our data, which reflect usual
practice in French hospitals, raise concern that dissatisfaction with end-of-life care may generate frustration, feelings of guilt, and lack of a sense of achievement among
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
870
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
Table 3. Presence at the Bedside at the Time of Death
No. (%) of Patients
Person Present
Total
(n=3793) a
Family member or friend
Nurse
Physician
Nursing assistant
Head nurse
Member of clergy
No one
925 (24.4)
1678 (44.2)
770 (20.3)
1299 (34.2)
115 (3.0)
16 (0.4)
612 (16.1)
Medical Wards Surgical Wards Geriatric Wards Palliative Care Unit
(n=1694)
(n = 407)
(n = 375)
(n = 35)
507 (29.9)
586 (34.6)
211 (12.5)
500 (29.5)
43 (2.5)
9 (0.5)
347 (20.5)
91 (22.4)
154 (37.8)
59 (14.5)
158 (38.8)
19 (4.7)
1 (0.2)
76 (18.7)
72 (19.2)
90 (24.0)
27 (7.2)
122 (32.5)
15 (4.0)
0
103 (27.5)
17 (48.6)
11 (31.4)
3 (8.6)
10 (28.6)
0
0
7 (20.0)
ICU
(n = 1052)
Emergency Department
(n = 228)
185 (17.6)
715 (68.0)
387 (36.8)
448 (42.6)
36 (3.4)
4 (0.4)
54 (5.1)
52 (22.8)
121 (53.1)
83 (36.4)
60 (26.3)
2 (0.9)
2 (0.9)
25 (11.1)
Abbreviation: ICU, intensive care unit.
totals may not match the totals in this column because data were missing for 2 patients.
a Row
Table 4. Factors Associated by Univariate Analysis With the Dying Process Being Perceived as Acceptable to the Nurses a
Variable
Admission to the ICU c
Written protocol for end-of-life decision making
No. of patients per nurse, median (25th-75th percentile range)
Death anticipated by the nurse
Designation by the patient of a surrogate decision maker
NTBR order or treatment limitation decision recorded
in the patient’s medical record
No exacerbation of pain before death
Family informed that death was imminent
Presence of family or friends at the time of death
Staff meeting with the family after the death
Staff trained specifically in end-of-life care
Death between 7 AM and 7 PM
Malignant neoplasm
Patient not institutionalized before hospitalization
Patient’s wishes about further treatment documented
Death Perceived
as Unacceptable
(n = 2198)
Death Perceived
as Acceptable
(n = 1595)
OR (95% CI)
P Value b
604 (28.6)
496 (22.6)
10 (4-10)
960 (43.7)
262 (11.9)
366 (16.7)
503 (32.3)
495 (31.0)
9 (4-10)
902 (56.6)
282 (17.7)
393 (24.6)
1.2 (1.0-1.4)
1.5 (1.3-1.8)
0.9 (0.9-0.9)
1.7 (1.5-1.9)
1.6 (1.3-1.9)
1.6 (1.4-1.9)
.02
⬍.001
⬍.001
⬍.001
⬍.001
⬍.001
1875 (85.3)
1579 (71.8)
619 (28.2)
1483 (67.5)
1069 (48.6)
1119 (50.9)
607 (27.6)
1865 (84.8)
274 (12.5)
1446 (90.7)
1399 (87.7)
807 (50.6)
1315 (82.5)
840 (52.7)
913 (57.2)
485 (30.4)
1412 (88.5)
273 (17.1)
1.7 (1.4-2.1)
2.8 (2.3-3.3)
2.6 (2.3-3.0)
2.3 (1.9-2.6)
1.2 (1.0-1.3)
1.3 (1.1-1.5)
1.1 (1.0-1.3)
1.4 (1.1-1.7)
1.5 (1.2-1.7)
⬍.001
⬍.001
⬍.001
⬍.001
.01
.001
.06
.001
⬍.001
Abbreviations: CI, confidence interval; ICU, intensive care unit; NTBR, not to be resuscitated; OR, odds ratio.
a Data were reported by nurses. Unless otherwise indicated, date are expressed as number (percentage) of patients.
b Calculated using the Wilcoxon test for quantitative variables and ␹2 test or Fisher exact test for qualitative variables.
c Data were missing for 120 patients.
staff.15 Factors associated by nurses with the perception
of adequate end-of-life care in our multivariate analysis
were attention to end-of-life issues manifesting as regular staff meetings and the availability of written protocols for end-of-life care, recorded in only 12.2% of the
departments in our study. Written procedures that are
accepted by all staff members decrease the risk that individual opinions may influence difficult decisions and
improve the quality of patient care at the end of life.32
The implementation of such procedures has been shown
to detect a higher rate of treatment refusal by patients24,33,34 and to improve the acceptance and traceability of decisions.33
Our study has a number of limitations. First, the 22.3%
response rate from clinical departments suggests a potential selection bias. Conceivably, nurses who participated were more likely to be dissatisfied. Nevertheless,
our study is the largest survey in this field that includes
a representative sample of French hospitals. Second, al-
though all questionnaires were completed within 10 days
of the death, the ratings are difficult to interpret, most
notably those on the competence of the patient or the
method used to designate the surrogate. Third, to keep
the questionnaire reasonably short, we did not obtain
qualitative data on items such as communication with
the patient. Fourth, we did not explore the perceptions
of physicians and relatives, which would have been a useful complement to the analysis of the nurses’ perceptions. Although a “good death” certainly varies according to the individual patient’s needs and is difficult to
define in operational terms, staff and relatives’ satisfaction are accepted surrogate markers to assess its quality.24,31,35,36 Several recent studies have shown that attention to families’ needs has a positive effect on their
satisfaction.37-39 However, because of the frequent absence of relatives and physicians at the patient’s bedside, we selected to study only the nurses’ perceptions
to assess the routine quality of organization and care pro-
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
871
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
Table 5. Factors Associated by Multivariate Analysis
With the Dying Process Being Perceived
as Acceptable to the Nurses a
Variable
OR (95% CI)
P Value
Written protocol for end-of-life
decision-making
No. of patients per nurse (for each
1-patient increment)
Death anticipated by the nurse
Designation by the patient of a
surrogate decision maker
NTBR order or treatment limitation
decision recorded in the patient’s
medical record
No exacerbation of pain before death
Family informed that death was
imminent
Presence of family or friends at the
time of death
Staff meeting with the family after the
death
1.5 (1.3-1.8)
⬍.001
1.0 (0.9-1.0)
⬍.001
1.2 (1.1-1.4)
1.3 (1.1-1.6)
.005
.005
1.4 (1.1-1.6)
⬍.001
2.0 (1.6-2.5)
1.5 (1.2-1.8)
.001
⬍.001
2.1 (1.8-2.5)
⬍.001
1.6 (1.3-1.9)
⬍.001
Abbreviations: CI, confidence interval; ICU, intensive care unit; NTBR, not
to be resuscitated; OR, odds ratio.
a Data were reported by nurses. Multiple logistic regression was
performed. The dependent variable was the death being perceived as
acceptable to the nurses or family (as reported by the nurses). The
independent variables were factors with P ⬍ .10 in the univariate analysis.
The P value by the Hosmer-Lemeshow goodness-of-fit test was 0.72,
indicating good fit of the logistic model.
vided to dying patients. Finally, our data represent clusters of patients within departments, but we did not account for this clustering in our analysis. The possible
discrepancy resulting from this analysis must be small
given that there is an important number of departments
and small clusters of patients per department.
In conclusion, despite the availability of national legislation and recent guidelines for end-of-life care,7,11 our study
identifies a number of barriers to high-quality end-of-life
care and provides a number of suggestions for improvement. Improved training of health care workers and greater
recognition of the importance of end-of-life care in hospitals constitute potential avenues for improvement. Our results suggest that a combination of factors reflected in nurses’
satisfaction can define quality in end-of-life care, including the presence of loved ones, designation by the patient
of a surrogate decision maker, and written procedures.2,18
Our results also suggest a need for concerted and pragmatic efforts, including the widespread implementation of
qualitative assessment of end-of-life procedures, following the example set in other fields of medicine.35,36,40 An
important potential benefit would be to reduce the burden imposed on the patients, their families, and the staff
associated with inappropriate therapies.15,31,41 In the long
term, these efforts are expected to fully integrate palliative
care into the spectrum of medical school curricula and into
care delivered in hospitals, and also to improve quality of
care through widely shared approaches.29,42,43
Accepted for Publication: October 29, 2007.
Author Affiliations: Departments of Anesthesiology and
Intensive Care (Drs Ferrand and Marty and Ms Vincent-
Genod) and Medical Intensive Care (Drs Lemaire and
Brun-Buisson), Henri Mondor Hospital and Paris 12
University, Department of Anesthesiology and Intensive Care, Henri Mondor Hospital and EA 3409 Paris 13
University (Dr Jabre), and Department of Internal and
Geriatric Medicine, Albert Chenevier Hospital and University Paris 12 (Dr Paillaud), Assistance Publique–
Hôpitaux de Paris (AP-HP), Créteil; Regional Palliative
Care Center, Jean-Minjoz Hospital, Besançon (Dr Aubry);
Medical-Surgical Intensive Care Unit, Croix-Rousse Hospital, Lyon (Dr Badet); Medical Intensive Care Unit, District Hospital Center, Pau (Dr Badia); Medical Intensive
Care Unit, Cochin-Saint-Vincent-de-Paul Hospital and
Paris-Descartes University (Dr Cariou), Department of
Pneumology, Tenon Hospital and Pierre et Marie Curie
University (Dr Gounant), Infection Control Unit, BichatClaude Bernard Hospital (Dr Regnier), and Haematology Department and Bone Marrow Transplant Unit and
Laboratory of Cellular Therapy, Saint-Louis Hospital and
Paris 7 University (Dr Socie), AP-HP, Paris; Palliative Care
Unit, Champcueil Hospital, AP-HP, Champcueil (Ms
Ellien); Department of Neurology, La Milétrie Hospital
and Poitiers University, Poitiers (Dr Gil); Department of
Anesthesiology and Intensive Care B, Saint Eloi Hospital and University of Montpellier I (Dr Jaber), and District Hospital Center (Dr Jay), Annonay; Coordination
of External Care and Palliative Care, Gustave Roussy Institute, Villejuif (Dr Poulain); Medical-Surgical Intensive Care Unit, District Hospital Center, La Roche-surYon (Dr Reignier); and Emergency Department, Bellevue
Hospital, Saint-Etienne (Dr Tardy), France.
Correspondence: Edouard Ferrand, PhD, Department of
Anesthesiology and Intensive Care, Henri Mondor Hospital, Assistance Publique–Hôpitaux de Paris, Paris 12 University, 94010 Créteil CEDEX, France (edouard.ferrand
@hmn.aphp.fr)
Author Contributions: Dr Ferrand had full access to all
of the data in the study and takes responsibility for the
integrity of the data and the accuracy of the data analysis. Study concept and design: Ferrand, P. Jabre, VincentGenod, Lemaire, and Marty. Acquisition of data: Ferrand,
P. Jabre, Vincent-Genod, Aubry, Badet, Badia, Cariou,
Ellien, Gounant, Gil, S. Jaber, Jay, Paillaud, Poulain,
Regnier, Reignier, Socie, and Tardy. Analysis and interpretation of data: Ferrand, P. Jabre, Lemaire, and BrunBuisson. Drafting of the manuscript: Ferrand, P. Jabre, and
Lemaire. Critical revision of the manuscript for important
intellectual content: Ferrand, P. Jabre, Vincent-Genod,
Aubry, Badet, Badia, Cariou, Ellien, Gounant, Gil, S. Jaber,
Jay, Paillaud, Poulain, Regnier, Reignier, Socie, Tardy,
Lemaire, Brun-Buisson, and Marty. Statistical analysis:
P. Jabre. Obtained funding: Ferrand. Administrative, technical, and material support: Ferrand, Vincent-Genod,
Aubry, Badet, Badia, Ellien, Gounant, Gil, S. Jaber, Jay,
Paillaud, Poulain, Regnier, Reignier, Socie, and Tardy.
Study supervision: Cariou, Lemaire, and Marty.
Financial Disclosure: None reported.
Funding/Support: This study was supported by grant
PHRC AOM 01 074 from the French Ministry of Health,
Direction de la Recherche Clinique.
Additional Contributions: A. Wolfe, MD, provided helpful advice and thoughtful reading of this manuscript.
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
872
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
French Mort-a-l’Hôpital Group Members
Marie Dupont, RN, Michel Kfoury, MD, Centre Hospitalier, Abbeville; Pierre Jarry, MD, Centre Hospitalier, Aix-en-Provenc; Marie Engelhorn,
RN, Bénédicte Laroche, RN, Centre Hospitalier, Albertville; Bruno Bayol, RN, Françoise Bompart, RN, Centre Hospitalier, Albi; Gisèle Blanc,
RN, Centre Hospitalier, Ales; Marc Bulcourt, RN, Hervé Dupont, MD, Annie Levasseur, RN, Anne Theron, RN, Patrick Thiery, RN, Centre
Hopitalier Universitaire (CHU), Amiens; Sylvie Alleman, RN, Jeanne Chalopin, RN, Catherine Coster, RN, Françoise Foin, RN, Monique
Fouchier, RN, Catherine Hily, RN, Laurence Laignel, RN, Valérie Plessis, RN, CHU, Angers; Isabelle Bartoletti, RN, Pascale Deletraz, RN,
Laurence Lenoir, RN, Murielle Rendu, RN, Catherine Salaun, RN, Centre Hospitalier, Annecy; Lynda Taib Merbai, RN, Centre Hospitalier,
Arpajon; Sylvie Bertrand-Pellicer, RN, Centre Hospitalier, Aubagne; Jeanne Bertrand-Pellicier, RN, Monique Feraud, RN, Hôpital Raymond
Garcin, Aubagne; Martine Blin, RN, Sylvie Champeau, MD, Nadine Coroier, RN, Daniel Royer, MD, Centre Hospitalier, Auxerre; Yolande
Brajon, RN, Michel Courant, MD, Centre Hospitalier, Avignon; France Royer, RN, Centre Hospitalier, Bar-le-Duc; Sophie Rousset, RN, Centre Hospitalier, Bayeux; Danny Bertrand, RN, Marc Duteil, MD, Catherine Poinin-Aubaye, RN, Marie Senecal, RN, Centre Hospitalier, Beaumontsur-Oise; Catherine Barreillon, RN, Isabelle Boyaux, RN, Anne Collin, RN, Valérie Parthiot, RN, Centre Hospitalier, Beaune; Noëlle Vidal,
RN, Centre Hospitalier, Beauvais; Régine Antoine, RN, Georges Beck, RN, Françoise Bouverot, RN, Sylvaine Sabas, RN, Centre Hospitalier,
Belfort; Jean Becker Schneider, MD, Annie Gloriod, RN, Francis Lemaire, MD, Hôpital Jean Minjoz, Besançon; Françoise Riffard, RN, Hôpital Saint-Jacques, Besançon; Dominique Bus, RN, Odile Daviaud Fortain, RN, Sylvie Dubois, RN, Marie Guevellou, RN, Centre Hospitalier, Béziers; Anne Baudin, RN, Martine Chaillou, RN, Chantal Chereau, RN, Françoise Metaireau, RN, Centre Hospitalier, Blois; Françoise
Judith, RN, Karen Lessieur, RN, Myriam Moureaud, RN, Jeanne Mignot, RN, Alice Perrin, RN, Huguette Vassalo, RN, Hôpital Avicenne,
Bobigny; Jean Luc Le Corre, RN, CHU, Bordeaux; Sylvie Gaillard, RN, Marie Josée Orsini, RN, Centre Hospitalier, Briançon; Marie-France
Bonnet, RN, Francis Dollard, MD, Catherine Maurice, RN, Marie Paderi, RN, Centre Hospitalier, Briey; Brigitte Elouard, RN, Institut de
Cancérologie et d’Hématologie, Hôpital Morvan, Brest; Jean Cledes, MD, Marc Legall, MD, Hôpital de la Cavale Blanche, Brest; France Akkari,
RN, Sylvie Vaultier, RN, Centre Hospitalier, Brignoles; Georgette Eymard, RN, Brigitte Lafaquiere, RN, Jeanne Sauviat, RN, Centre Hospitalier, Brive; Jeanne Bretonnet, RN, Béatrice Faure, RN, Catherine Halley, RN, CHU, Caen; Régine Jallet, RN, Centre Hospitalier, Cahors;
Michèle Cornu, RN, Centre Hospitalier, Calais; Chantal Chandelier, RN, Centre Hospitalier, Cannes; Ghislaine Guillon, RN, Marie-Hélène
Le Bilhan, RN, Sophie Pellen, RN, Centre Hospitalier, Carhaix-Plouger; Jean-Pierre Gandon, MD, Centre Hospitalier, Castres; Anne Marie
Recordon, RN, Centre Hospitalier, Chalon; Pierre Bondil, MD, Véronique Guegan, RN, Centre Hospitalier, Chambéry; Régine Ferry, MD,
Hôpital Manchester, Charleville-Mézières; Jérôme Buton, RN, Catherine Darde, RN, Christine Grabot, RN, Paul Sandrine, RN, Virginie Trouillet,
RN, Centre Hospitalier, Chartres; Aline Mongereau, RN, Centre Hospitalier, Châteauroux; Serge Rineau, RN, Henri Sechet, RN, Centre
Hospitalier, Cholet; François Mustier, RN, Nicole Peyraud, RN, Florence Policard, RN, Catherine Saint Leger, RN, Hôpital Gabriel Montpied, Clermont-Ferrand; Isabelle Panchevre, RN, Paul Richter, RN, Jean-Philippe Roddier, MD, Hôpital Hotel-Dieu, Clermont-Ferrand; Roland
Lopitaux, MD, Hôpital Nord, Clermont-Ferrand; Chantal Bicocchi, RN, Françoise Heintz, RN, Jeanne Legrand, RN, Marie Soulie, RN, Christine
Taillandier, RN, Marie Tapia, RN, Hôpital Beaujon, Clichy; Sophie Arnoux, RN, Marc Brun, MD, Françoise Hug, RN, Michèle Kowolik, RN,
Aline Maranzana, RN, Marie Schelcher, RN, Michel Schoenenberger, MD, Hôpitaux Civils, Colmar; Véronique Camalet, RN, Chantal Grondin,
RN, Anne-Marie Lable, RN, Sophie Lenfant, RN, Catherine Liebert, RN, Hôpital Louis Mourier, Colombes; Ghislaine Benhamou-Jantelet,
RN, Christine Saliou, RN, Hôpital Henri Mondor, Créteil; Louis Alessandrin, MD, Michel Carpentier, RN, Martine Dourte, RN, Marie Dugrand,
RN, Audrey Durruty, RN, Elodie Labarthe, RN, Françoise Sanguingt, RN, Pierre Senjean, MD, Centre Hospitalier, Dax; René Coatmeur,
MD, Marie Guillaume, RN, Claude Sautereau, RN, Complexe du Bocage, CHU, Dijon; Gabrielle Jacquemin, RN, Hôpital général, CHU,
Dijon; Emmanuel Sciluna, MD, Centre Hospitalier, Dinan; Martine Bricourt, RN, Brigitte Perez, RN, Centre Hospitalier, Dole; Jean De Lamartiere,
MD, Centre Hospitalier, Doullens; Serge Dubouis, MD, Catherine Ledant, RN, Centre Hospitalier de la Dracenie, Draguignan; Marie Pascale
Bourdon, RN, Dorothée Chambrin, RN, Christophe Cocheteux, MD, Pascale Deronne, RN, Sylvie Vaillant, RN, Virginie Willems, RN, Centre Hospitalier, Dunkerque; Edwige Guistel, RN, Centre Hospitalier Auban-Moet, Epernay; Nathalie Morel, RN, Centre Hospitalier, Epinal;
Pierre Coathalem, RN, Centre Hospitalier, Eaubonne; Carole Pelissier, RN, Robert Verdier, MD, Centre Hospitalier Eure-Seine, Evreux;
Christiane Garcia, RN, Centre Hospitalier du Val d’Ariège, Foix; Sylvie Bordeau, RN, Danielle Chabrand, RN, Christiane Kieffer, RN, Valérie
Wiegelt, RN, Centre Hospitalier, Gap; Jean Bernard, MD, Jocelyne Noel, RN, Hôpital Raymond Poincaré, Garches; Marie Thérèse Garnier,
RN, Centre Hospitalier, Gonesse; Béatrice Maurand, RN, Bruno Steffann, MD, Centre Hospitalier, Gray; Laurence Colombat, RN, Anne Engelstein,
RN, Ghislaine Masson, RN, Jean Reyt, MD, CHU, Grenoble; Eric Roy, MD, Centre Hospitalier, Guéret; Samia Malek, RN, Centre Hospitalier, Lagny; Isabelle Couasnon, RN, Chantal Letailleur, RN, Centre Hospitalier, L’Aigle; Sylvie Labrouche, RN, Pierre Plagnol, MD, Centre
Hospitalier, Langon; Françoise Dume, RN, Laurence Dupont, RN, Christian Liez, MD, Centre Hospitalier, Laon; Martine Barreteau, RN,
Paul Baudouin, RN, Christian Brechet, RN, Chantal Coic, RN, Natacha Maquigneau, RN, Florence Rabahand, RN, Jean-Marc Villeneuve,
RN, Centre Hospitalier Départemental, La Roche-sur-Yon; Alain Goichon, MD, Centre Hospitalier, La Teste de Buch; Michelle Belaud, RN,
Lydia Costec, RN, Centre Hospitalier, Laval; Francis Gabez, MD, Magali Philibert, RN, Centre Hospitalier, Le Creusot; Marie Biressi, RN,
Christine Branchard, RN, Marc Doyen, RN, Françoise Escure, RN, Catherine Vincent, RN, Hôpital Bicêtre, Le Kremlin-Bicêtre; Jocelyne
Descours, RN, Francis Lussiez, RN, Centre Hospitalier, Lens; Pierre Ceccaldi, MD, Catherine Macaud, RN, Centre Hospitalier, Libourne;
Maryline Bourgoin, RN, Clinique Marc Linquette, Lille; Catherine Bachy, RN, Hôpital Albert Calmette, Lille; Christiane De Conninck, RN,
Christine Morel, RN, Marc Pezim, RN, Hôpital Claude Hurriez, Lille; Catherine Grayeau, RN, Hôpital Les Bateliers, Lille; Odile Caron, RN,
Yvan Roos, RN, Dominique Thely, RN, Centre Hospitalier, Limeil-Brevannes; Christelle Durand, RN, Emilie Durand, RN, Nathalie Houdard,
RN, Françoise Marneix, RN, Françoise Marot, RN, CHU, Limoges; Bernadette Holland, RN, Nathalie Saint Wril, RN, Hôpital Roger Salengro, Lille; Marie Josée D’Anjou, RN, Evelyne Michel, RN, Centre Hospitalier, Lisieux; Marion Chipaux, RN, Catherine Guedon, RN, France
Lucas, RN, Centre Hospitalier, Longjumeau; Sylvie Ostermann, RN, Centre Hospitalier, Lons-le-Saunier; Catherine Begnic, RN, Centre Hospitalier de Bretagne Sud, Lorient; Martine Abadie, RN, Sylvie Boutelier, RN, Françoise Girard, RN, Renée Lamarque, RN, Martine Macias,
RN, Jean-Pierre Mansaut, RN, Louis Perez, MD, Sylvie Pernin, RN, Eric Stoltz, MA, Centre Hospitalier, Lourdes; Pierre Welfringer, MD,
Patricia Zanon, RN, Centre Hospitalier, Luneville; Patrick Lepers, MD, Hôpital De Brousse, Lyon; Marie Cilia, RN, Catherine Fournier, RN,
Martine Saillant, RN, Hôpital de la Croix-Rousse, Lyon; Jeanne Urbain, RN, Hôpital Hotel-Dieu, Lyon; Pierre Cartalat, MD, Marie Frene,
RN, Hôpital Neuro-Chirurgical Pierre Wertheimer, Lyon; Isabelle Medalin, RN, Hôpital Cardio-Vasculaire, Lyon; Pascal Bosq, MD, Centre
Hospitalier, Manosque; Anne Dobbeistein, RN, Véronique Jacque, RN, Centre Hospitalier, Mantes-la-Jolie; Jeanne Costa, RN, Isabelle Garcin,
RN, Jean Pellet, MD, Catherine Tetard, RN, Hôpital Sainte-Marguerite, Marseille; Nathalie Berteau, Hôpital Nord, Marseille; Anne Deneubourg,
RN, Philippe Stephane, MD, Chantal Tisserand, RN, Martine Vermeersch, RN, Centre Hospitalier, Maubeuge; Christine Geslin, RN, Centre
Hospitalier, Mayenne; Florence Dupre, RN, Françoise Lemaire, RN, Hépato-Centre Hospitalier, Meaux; Véronique Da Silva, RN, Centre
Hospitalier, Millau; Anne Berthier, RN, Bruno Thomas, RN, Centre Hospitalier, Montaigu; Pierre Gendre, MD, Centre Hospitalier, Montauban; Patricia Bourquin, RN, Chantal Houze, RN, Marie Houze, RN, Nathalie Morel, RN, Andrée Rodier, RN, Marc Dufour, MD, Centre
(continued)
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
873
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
French Mort-a-l’Hôpital Group Members (cont)
Hospitalier, Montbéliard; Jean Grand, MD, Centre Hospitalier, Montbrison; Brigitte Neuville, RN, Marie Tarriottes, RN, Centre Hospitalier,
Montelimar; Martine Gregy, RN, Martine Hasley, RN, Centre Hospitalier, Montereau; Françoise Lutgen, RN, Centre Hospitalier, Montfermeil; Francis Chausset, MD, Centre Hospitalier, Montluçon; Pascale Baillet, RN, Said Mokhtari, MD, Hôpital Simone Weil, Montmorency;
Thierry Gressier, RN, Clinique Antonin Balmes, Montpellier; Jeanne Rouby, RN, Hôpital Guy de Chauliac, Montpellier; Nicole Lezin, RN,
Hôpital Lapeyronnie, Montpellier; Josiane Geminard, RN, Hôpital Saint-Eloi, Montpellier; Anne-Marie Derrien, RN, Martine Gireault, RN,
Marie Maillet-Vioud, MD, Brigitte Mel, RN, Françoise Quemener, RN, Christine Troadec, RN, Centre Hospitalier, Morlaix; Catherine Bruder,
RN, Béatrice Nass, RN, Viviane Pflugfelder, RN, Centre Hospitalier, Mulhouse; Noelle Dawint, RN, Charles Fauvel, MD, Jeanne Laumesfeld,
RN, Pierre Taillandier, MD, Hôpital Central, Nancy; Régis Caillaud, MD, Renaud Clement, MD, Philippe Leconte, MD, Anne Mallet, RN,
Hôpital Hotel-Dieu, Nantes; Catherine Demier, RN, Fabienne Meinier, RN, Centre Hospitalier, Nevers; Francis Borelci, RN, Jean Bourgeon,
MD, Pierre Caroli-Bosc, MD, Valérie Castera, RN, Emmanuel Herrout, RN, Régine Ladame-Hoff, RN, Véronique Mondain, MD, Catherine
Raffermi, RN, Marie-Pierre Vigue, RN, Hélène Virello, RN, Hôpital Archet, Nice; Elisabeth Patatut, RN, CHU, Nı̂mes; Marc Bertet, MD,
Jeanne Cauderlier, RN, Sophie Desmarais, RN, Sylvie Quatrehomme, RN, Huguette Skarniak, RN, Centre Hospitalier régional, Orléans;
Sylvie Dachicourt, RN, Christelle Desclaux, RN, Dominique Larroux, RN, Catherine Prat, RN, Centre Hospitalier, Orthez; Marie Goncalves,
RN, Centre Hospitalier, Paimpol; Nathalie Corbel, RN, Catherine Saltel, RN, Hôpital Ambroise Paré, Paris; Sabine Belorgey, RN, Nelly Derennes,
RN, Jeanne Kohler, RN, Gérard Partouche, RN, Marie Roussel, RN, Catherine Veron, RN, Hôpital Bichat, Paris; Gabriel Abitbol, MD, Hôpital Broca, Paris; Martine Jean, RN, François Leconte, RN, Marie-Josée Nadaud, RN, Jean Yves Picart-Jacq, RN, Joëlle Pion Graff, RN, Anne
Tissier, RN, Michèle Vezirian, RN, Hôpital Cochin, Paris; Annick Bosc, RN, Sylvie Thibaud, MD, Hôpital des Diaconesses, Paris; Marie Vezzoci,
RN, Hôpital Fernand-Vidal, Paris; Paris; Françoise Bruguiere-Fontenille, RN, Dominique Denis, RN, Fred Sopta, RN, Eliane Thieffry, RN,
Catherine Vinot, RN, Hôpital George Pompidou, Paris; Alice Brebant, RN, Stéphanie Sanchez, RN, Hôpital Hôtel-Dieu, Paris; Betty Bendahan,
RN, Françoise Chardayre, RN, Maryse Charlot, RN, Mylène De Bernardy, RN, Gisèle Hoarau, RN, Nicole Masseau, RN, Michèle Mione, RN,
Hôpital la Pitié Salpêtrière, Paris; Catherine Batllo, RN, Evelyne Bourlier, RN, Solange Herpin, RN, Françoise Pezzetti, RN, Noelle Thomas,
RN, Nathalie Vignaud, RN, Hôpital Lariboisière, Paris; Brigitte Maga, RN, Hôpital Rossini-Chardon Lagache, Paris; Muriel Duverger, RN,
Martine Grador, RN, Michelle Marie, RN, Hôpital Saint-Antoine, Paris; Sophie Diard, RN, Michèle Jaubert, RN, Jean Taboulet, MD, Marie
Vincent, RN, Hôpital Saint-Louis, Paris; Jeanne Costa, MD, Sylvie Dupuy, RN, Marie Leconte, RN, Hôpital Tenon, Paris; Dominique Marteil,
MD, Centre Hospitalier, Parthenay; Catherine Clavio, RN, Nadège Lambion, MA, Centre Hospitalier, Pau; Franck Geneau, MD, Centre Hospitalier, Peronne; Pierre Koninck, MD, Christian Negre, MD, Centre Hospitalier, Perpignan; Dominique Conbarnous, RN, Centre Hospitalier Lyon Sud, Pierre-Bénite; Bernard Pocquet, MD, Centre Hospitalier, Pithiviers; Béatrice Le Mercier, RN, Centre Hospitalier, Ploermel;
Henry Carpin, RN, Jean-Pierre Do, MD, Jeanne Moustache, RN, CHU de Guadeloupe, Pointe-à-Pitre; Marc Baudry, MD, Nicole Bernardet,
RN, Marie-Line Debarre, RN, Odile Feston, RN, Nathalie Lassagne-Bertrand, RN, Emmanuelle Luneau, RN, Corinne Milon, RN, Pascale
Paitre, RN, Isabelle Troubat, RN, Hôpital de La Milétrie, Poitiers; Françoise Archambault, RN, Marie Puente, RN, Centre Hospitalier Intercommunal, Poissy; Audrey Vedis, RN, Centre Hospitalier, Poissy; Daniel Monnier, MD, Centre Hospitalier, Pont L’Abbé; Virginie Perrin,
RN, Centre Hospitalier, Pontarlier; Luc Dubost, MD, Catherine Guilleux, RN, Centre Hospitalier René Dubos, Pontoise; Madeleine Gouriten,
RN, Centre Hospitalier, Quimper; Martine Alain, RN, Jean Paul Rohn, MD, Centre Hospitalier, Quimperlé; Chantal Legrand, RN, Centre
Hospitalier, Rang du Fliers; Isabelle Kazes, RN, Hôpital Maison Blanche, Reims; Marianne Dufour, RN, Hôpital Robert Debré, Reims; Patricia
Morin, RN, Marie-Pierre Nouvion, RN, Hôpital Sébastopol, Reims; Brigitte Letissier, RN, résidence des Capucins, Reims; Marie-Noëlle Gillet,
RN, Centre Hospitalier, Remiremont; Pierre Grosbois, MD, Béatrice Loisel, RN, CHU, Rennes; Pierre Husson, MD, Centre Hospitalier, Rethel; Loic Vallaeus, MD, Centre Hospitalier, Rochefort; Christine Marteel, RN, Savary Maryse, RN, Centre Hospitalier, Roubaix; Catherine
Beaufils, RN, Laurence Duclos, RN, Marie Le Brun Woinet, RN, Jean Rale, MD, Nadine Toupin, RN, Hôpital Charles Nicolle, Rouen; Rachel
Bejot, RN, Centre Hospitalier, Saint-Dié; Danielle Brun, RN, Monique Pichon-Galland, RN, Jean Stierlam, MD, CHU, Saint-Etienne; Martine
Alcaraz, RN, Laurent Vives, MD, Centre Hospitalier, Saint Gaudens; Monique Palak, RN, Centre Hospitalier Mémorial France-Etats-Unis,
Saint Lô; François Vieau, RN, Centre Hospitalier, Saint Malo; Anne Clavier, RN, Centre Hospitalier, Saint Nazaire; Béatrice Morin, RN,
Centre Hospitalier, Saint-Omer; Béatrice Boussouak, RN, Centre Hospitalier, salon de Provence; Pascale Chevet, RN, Centre Hospitalier,
Saumur; Isabelle Moser, RN, Centre Hospitalier, Saverne; Elisabeth Mugnier, RN, Sylvie Renaudin, RN, Anne Rossignol, RN, Centre Hospitalier, Sens; Jean Chan, MD, Centre Hospitalier, Sisteron; Claire Cayla, RN, Chantal Ferry, RN, Ghislaine Houde, RN, Sophie Mulpas, RN,
Centre Hospitalier, Soissons; Philippe Loirat, MD, Marie Françoise Vidal, RN, Hôpital Foch, Suresnes; Jean Decamps, MD, Centre Hospitalier, Tarbes; Annie Morgante, RN, Hôpital de la Grave, Toulouse; Roselyne Forner, RN, Hôpital Larrey, Toulouse; Marc Delory, RN, Thérèse
Forget, RN, Catherine Palanque, RN, Hôpital Purpan, Toulouse; Fouad Atallah, RN, Béatrice Guillaume, RN, Marie Plaza, RN, Hôpital Rangueil,
Toulouse; Yves Boileau, MD, Isabelle Bouffart, RN, Marc Lanson, MD, Annick Meunier, RN, Muriel Pourrain, RN, Marie Serna, RN, CHU,
Tours; Marc Simon, MD, Centre Hospitalier, Troyes; Valérie Godin, RN, Françoise Rudant, RN, Centre Hospitalier, Valenciennes; Marie
Lafrogne, RN, Isabelle Raclot, RN, Emmanuelle Roy, RN, Marilyne Vantini, RN, Hôpital de Brabois, Vandoeuvre-Les-Nancy; Magali Cobillon,
RN, Béatrice Gierens, RN, Centre Hospitalier Bretagne Atlantique, Vannes; Maité Bitsindou, RN, Centre Hospitalier, Vendôme; Anne Marie
Roche, RN, Centre Hospitalier, Vierzon; Jocelyne Gourdet, RN, Didier Peillon, MD, Centre Hospitalier, Villefranche sur Saône; Catherine
Dubouch, RN, Elisabeth Lecaudey, RN, Monique Prades, RN, Institut Gustave Roussy, Villejuif; Marie Christine Boblioue, RN, Anne Halbin,
RN, Centre Hospitalier, Vitry le François; Catherine Izylowski, RN, Centre Hospitalier, Voiron.
Sébastien Boyer (Sigillat Institute) assisted in analysis of
the data. We thank all of the nurses whose dedicated efforts ensured the high quality of the data.
4.
5.
REFERENCES
6.
1. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ.
2003;326(7379):30-34.
2. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA.
Factors considered important at the end of life by patients, family, physicians,
and other care providers. JAMA. 2000;284(19):2476-2482.
3. Truog RD, Cist AF, Brackett SE, et al; Ethics Committee of the Society of Critical
7.
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
874
Care Medicine. Recommendations for end-of-life care in the intensive care unit.
Crit Care Med. 2001;29(12):2332-2348.
Morrison RS, Meier DE. Palliative care. N Engl J Med. 2004;350(25):2582-2590.
Mularski RA, Curtis JR, Billings JA, et al. Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup. Crit Care Med. 2006;34(11)(suppl):
S404-S411.
Ferrand E. Société de Réanimation en Langue Française. End-of-life care in the
intensive care unit: recommendations of the Société de Réanimation en Langue
Française [in French]. Rev Mal Respir. 2003;20(6, pt 1):981-988.
Agence Nationale d’Accréditation et d’Evaluation en Santé (ANAES). Conférence
de consensus: L’accompagnement des personnes en fin de vie et de leurs proches,
Paris, 14-15 janvier 2004. http://www.has-sante.fr/portail/upload/docs/application
/pdf/Accompagnement_long.pdf. Accessed April 17, 2005.
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.
8. Benkimoun P, Blanchard S. Le débat sur la fin de vie est relancé. Le Monde. November 11-12, 2001:10.
9. LOI No. 2002-303 du 4 mars 2002 relative aux droits des malades et à la qualité du
système de santé. Journal Officiel de la République Française du 5 mars 2002. http:
//www.legifrance.gouv.fr/WAspad/UnTexteDeJorf?numjo=MESX0100092L. Accessed March 22, 2002.
10. LOI No. 99-477 du 9 juin 1999 visant à garantir le droit à l’accès aux Soins Palliatifs.
Journal Officiel de la République Française du 10 juin 1999. http://www.sante
.gouv.fr/htm/actu/palliatif/8palliatif1.htm. Accessed April 17, 2005.
11. LOI No. 2005-370 du 22 avril 2005 relative aux droits des malades et à la fin de vie.
Journal Officiel de la République Française du 23 avril 2005. http://www.legifrance
.gouv.fr/affichTexte.do;jsessionid=B3BA46408053A0F0B157D47B1C59BD25
.tpdjo09v_1?cidTexte=JORFTEXT000000446240&dateTexte=&oldAction
=rechJO. Accessed April 25, 2005.
12. SUPPORT Principle Investigators. A controlled trial to improve care for seriously ill hospitalized patients: the study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT) [published correction
appears in JAMA. 1996;275(16):1232]. JAMA. 1995;274(20):1591-1598.
13. Kmietowicz Z. Half of patients in intensive care receive suboptimal care. BMJ.
2005;330(7500):1101.
14. Roupie E. La mort aux urgences: enquête prospective préliminaire. In: Actualité
en Réanimation et Urgences. Vol 281-9. Paris, France: Elsevier; 1999:281-289.
15. Baggs JG, Schmitt MH, Mushlin AI, et al. Association between nurse-physician
collaboration and patient outcomes in three intensive care units. Crit Care Med.
1999;27(9):1991-1998.
16. Ferrand E, Bachoud-Levi AC, Rodrigues M, Maggiore S, Brun-Buisson C, Lemaire F. Decision-making capacity and surrogate designation in French ICU patients.
Intensive Care Med. 2001;27(8):1360-1364.
17. Goodlin SJ, Winzelberg GS, Teno JM, Whedon M, Lynn J. Death in the hospital.
Arch Intern Med. 1998;158(14):1570-1572.
18. Hodde NM, Engelberg RA, Treece PD, Steinberg KP, Curtis JR. Factors associated with nurse assessment of the quality of dying and death in the intensive
care unit. Crit Care Med. 2004;32(8):1648-1653.
19. Curtis JR, Patrick DL, Engelberg RA, Norris K, Asp C, Byock I. A measure of the
quality of dying and death: initial validation using after-death interviews with family members. J Pain Symptom Manage. 2002;24(1):17-31.
20. Weitzen S, Teno JM, Fennell M, Mor V. Factors associated with site of death: a
national study of where people die. Med Care. 2003;41(2):323-335.
21. Rubenfeld GD, Curtis JR. Improving care for patients dying in the intensive care
unit. Clin Chest Med. 2003;24(4):763-773.
22. Morrison RS, Meier DE, Fischberg D, et al. Improving the management of pain
in hospitalized adults. Arch Intern Med. 2006;166(9):1033-1039.
23. Levy CR, Ely EW, Payne K, Engelberg RA, Patrick DL, Curtis JR. Quality of dying
and death in two medical ICUs: perceptions of family and clinicians. Chest. 2005;
127(5):1775-1783.
24. Bailey FA, Burgio KL, Woodby LL, et al. Improving processes of hospital care
during the last hours of life. Arch Intern Med. 2005;165(15):1722-1727.
25. Donaldson MS, Field MJ. Measuring quality of care at the end of life. Arch Intern
Med. 1998;158(2):121-128.
26. Christakis NA, Lamont EB. Extent and determinants of error in doctors’ prog-
27.
28.
29.
30.
31.
32.
33.
34.
35.
36.
37.
38.
39.
40.
41.
42.
43.
(REPRINTED) ARCH INTERN MED/ VOL 168 (NO. 8), APR 28, 2008
875
noses in terminally ill patients: prospective cohort study. BMJ. 2000;320(7233):
469-472.
Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care.
BMJ. 2005;330(7498):1007-1011.
Comité Consultatif National d’Ethique. Avis sur la formation à l’éthique médicale, 29 avril 2004, No. 84. http://www.ccne-ethique.fr. Accessed March 20, 2005.
Nelson JE. Identifying and overcoming the barriers to high-quality palliative care
in the intensive care unit. Crit Care Med. 2006;34(11)(suppl):S324-S331.
Puntillo KA, McAdam JL. Communication between physicians and nurses as a
target for improving end-of-life care in the intensive care unit: challenges and
opportunities for moving forward. Crit Care Med. 2006;34(11)(suppl):S332S340.
Ferrand E, Lemaire F, Regnier B, et al; French RESSENTI Group. Discrepancies
between perceptions by physicians and nursing staff of ICU end-of-life decisions.
Am J Respir Crit Care Med. 2003;167(10):1310-1315.
Cook DJ, Guyatt GH, Jaeschke R, et al; Canadian Critical Care Trials Group.
Determinants in Canadian health care workers of the decision to withdraw life
support from the critically ill. JAMA. 1995;273(9):703-708.
Treece PD, Engelberg RA, Crowley L, et al. Evaluation of a standardized order
form for the withdrawal of life support in the intensive care unit. Crit Care Med.
2004;32(5):1141-1148.
Campbell ML, Guzman JA. Impact of a proactive approach to improve end-oflife care in a medical ICU. Chest. 2003;123(1):266-271.
Clarke EB, Curtis JR, Luce JM, et al. Quality indicators for end-of-life care in the
intensive care unit. Crit Care Med. 2003;31(9):2255-2262.
Thompson BT, Cox PN, Antonelli M, et al; European Respiratory Society; European Society of Intensive Care Medicine; Society of Critical Care Medicine; Sociètède Rèanimation de Langue Française. Challenges in end-of-life care in the
ICU: statement of the 5th International Consensus Conference in Critical Care:
Brussels, Belgium, April 2003: executive summary. Crit Care Med. 2004;32
(8):1781-1784.
Curtis JR, Engelberg RA, Wenrich MD, Shannon SE, Treece PD, Rubenfeld GD.
Missed opportunities during family conferences about end-of-life care in the intensive care unit. Am J Respir Crit Care Med. 2005;171(8):844-849.
Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):
469-478.
White DB, Braddock CH III, Bereknyei S, Curtis JR. Toward shared decision making at the end of life in intensive care units: opportunities for improvement. Arch
Intern Med. 2007;167(5):461-467.
Hanson LC, Tulsky JA, Danis M. Can clinical interventions change care at the
end of life? Ann Intern Med. 1997;126(5):381-388.
Poncet MC, Toullic P, Papazian L, et al. Burnout syndrome in critical care nursing staff. Am J Respir Crit Care Med. 2007;175(7):698-704.
Cook D, Rocker G, Heyland D. Dying in the ICU: strategies that may improve endof-life care. Can J Anaesth. 2004;51(3):266-272.
Danis M, Federman D, Fins JJ, et al. Incorporating palliative care into critical care
education: principles, challenges, and opportunities. Crit Care Med. 1999;27
(9):2005-2013.
WWW.ARCHINTERNMED.COM
Downloaded from www.archinternmed.com at HAUTE AUTORITE DE LA SANTE, on April 28, 2008
©2008 American Medical Association. All rights reserved.