Advance Directives in Nursing Homes Prevalence, Validity, Significance, and Nursing Staff Adherence

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DOI: 10.3238/arztebl.2012.0577 · Source: PubMed
Abstract
The German Advance Directives Act of 2009 confirms that advance directives (ADs) are binding. Little is known, however, about their prevalence in nursing homes, their quality, and whether they are honored. In 2007, we carried out a cross-sectional survey in all 11 nursing homes of a German city in the state of North Rhine-Westphalia (total nursing home population, 1089 residents). The ADs were formally analyzed and assessed by 3 raters with respect to 5 clinical decision-making scenarios. The specifications of the ADs were compared with what the nurses reported that they would do in each scenario. 11% of the nursing home residents had a personal AD, and a further 1.4% an AD by proxy. 52% of the 119 ADs that we analyzed contained no documentation of the patient's decision-making capacity and/or voluntariness, and only 3% contained documentation of a medical consultation. Most ADs failed to state what should be done in case the patient acutely became incapable of consenting to treatment (inter-rater agreement [IRA] >83%). For the case of permanent decisional incapacity, many ADs contained ambiguous information (IRA<43%). 23 directives stated that the patient should not have cardiopulmonary resuscitation in case an arrest occurred in the patient's current clinical condition, but the nurses reported a corresponding do-not-resuscitate agreement for only 9 of these 23 patients. In 2007, ADs were rare in these German nursing homes, and most of the existing ones were invalid, of little meaning, and/or disregarded by the nursing staff. There is little reason to believe that the Advance Directives Act of 2009 will bring about any major change in this miserable status quo. Advance care planning, a system-oriented concept still uncommon in Germany, could give new impulses to promote a cultural change in this respect.
MEDICINE
ORIGINAL ARTICLE
Advance Directives in Nursing Homes
Prevalence, Validity, Significance, and Nursing Staff Adherence
Sarah Sommer, Georg Marckmann, Michael Pentzek, Karl Wegscheider,
Heinz-Harald Abholz, Jürgen in der Schmitten
SUMMARY
Background: The German Advance Directives Act of 2009 confirms that
advance directives (ADs) are binding. Little is known, however, about their
prevalence in nursing homes, their quality, and whether they are honored.
Methods: In 2007, we carried out a cross-sectional survey in all 11 nursing
homes of a German city in the state of North Rhine–Westphalia (total nursing
home population, 1089 residents). The ADs were formally analyzed and
assessed by 3 raters with respect to 5 clinical decision-making scenarios.
The specifications of the ADs were compared with what the nurses reported
that they would do in each scenario.
Results: 11% of the nursing home residents had a personal AD, and a further
1.4% an AD by proxy. 52% of the 119 ADs that we analyzed contained no
documentation of the patient’s decision-making capacity and/or voluntariness,
and only 3% contained documentation of a medical consultation. Most ADs
failed to state what should be done in case the patient acutely became
incapable of consenting to treatment (inter-rater agreement [IRA] >83%). For
the case of permanent decisional incapacity, many ADs contained ambiguous
information (IRA<43%). 23 directives stated that the patient should not have
cardiopulmonary resuscitation in case an arrest occurred in the patient’s
current clinical condition, but the nurses reported a corresponding do-not-
resuscitate agreement for only 9 of these 23 patients.
Conclusion: In 2007, ADs were rare in these German nursing homes, and most
of the existing ones were invalid, of little meaning, and/or disregarded by the
nursing staff. There is little reason to believe that the Advance Directives Act of
2009 will bring about any major change in this miserable status quo. Advance
care planning, a system-oriented concept still uncommon in Germany, could
give new impulses to promote a cultural change in this respect.
Cite this as:
Sommer S, Marckmann G, Pentzek M, Wegscheider K, Abholz HH, in der
Schmitten J: Advance directives in nursing homes: prevalence, validity,
significance, and nursing staff adherence. Dtsch Arztebl Int 2012; 109(37):
577–83. DOI: 10.3238/arztebl.2012.0577
T
he third act amending German guardianship legis-
lation (known as the Advance Directives Act)
came into power on 1 September 2009. This new law
essentially confirmed high-court jurisprudence on the
subject of advance directives and the corresponding
principles of the German Medical Association (1). The
act strengthened the faith in due process of many
involved in the creation and implementation of advance
directives (2). As experience in the USA has shown,
however (4), such legislation cannot be expected to
have any far-reaching impact with regard to the preva-
lence and quality of the traditional advance direc-
tive—an instrument whose lack of effect has been dem-
onstrated years ago (3). The Advance Directives Act
has essentially not changed the law and neither pro-
vides incentives nor foresees resources for advisory
consultations. In contrast to a draft bill that was de-
feated in parliament (5), the act contains—apart from
stipulation of the written form—no criteria for the
validity of patients’ advance directives. As long as pat-
ently significant and valid advance directives remain
the exception in daily clinical practice, it can hardly be
expected that directives will be heeded by medical or
non-medical staff.
Beyond questionnaire survey results (6, 7), there are
no empirical data on the actual frequency of advance
directives in Germany. Worldwide, there are only a
handful of studies on the formal and substantive quality
of advance directives and on whether they are observed
(8–11). Advance directives are particularly relevant in
nursing homes for senior citizens, where the elderly
and mostly chronically multimorbid residents do not
always wish unlimited use of life-prolonging measures,
though here too empirical data are sparse (12).
Empirical evaluation of the effect of the new legis-
lation in 2009 on the frequency and quality of advance
directives is impossible without knowledge of the
situation before passage of the Advance Directives Act.
In 2007 we investigated the prevalence, significance,
validity, and observation of advance directives in
German nursing homes.
Method
Study type, sample, and survey period
We carried out a descriptive cross-sectional complete
survey of all 11 nursing homes in a city in the German
federal state of North Rhine–Westphalia (convenience
Institute of General Practice, Düsseldorf University Hospital:
Dr. med. Sommer, Dr. rer nat. Pentzek, Dipl.-Psych., Prof. Dr. med. Abholz, Dr. med. in der Schmitten, MPH
Institute of Ethics, History and Theory of Medicine at the Ludwig Maximilians University Munich:
Prof. Dr. med. Marckmann, MPH
Department of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf:
Prof. Dr. rer. pol. Wegscheider
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sample) covering the period from June to September
2007. Nine of these homes were run by the Christian
church (some Protestant, some Catholic), one was pri-
vate, and one was a community nursing home.
Ethics committee approval
The study was approved by the ethics committee of
Düsseldorf University Hospital (no. 2997).
Terminology
We understand the term “advance directive” to mean a
written statement signed by a person of legal age to
cover the eventuality that they will lack decision-
making capacity at some future time. This statement
regulates whether the person concerned will agree, or
not, to “certain investigations […], treatments, or med -
ical interventions, not yet planned at the time of the
directive” (§ 1901a para. 1 of the German Civil Code).
In the course of our survey we were confronted with
directives that were signed not by the individuals them-
selves but by their representatives according to § 1901a
para. 2 of the German Civil Code, which implicitly pro-
vides for advance written specification of a nursing
home resident’s presumed wishes (13). Such directives
have been termed “advance care planning by proxy”
(14) and will be referred to here as “proxy directives”.
Prevalence, consent, and formal analysis
In each nursing home members of staff informed us
how many of the residents were covered by personally
signed or proxy advance directives. With the consent of
the residents or their legal representatives, their
sociodemographic data were recorded and the form and
content of the directives were analyzed.
Comprehensibility of validity for third parties
By validity we mean agreement (congruence) be-
tween what is directed in the AD and what the
well-informed person meant to direct under the
(actual or hypo thetical) requirements for informed
consent: decision-making capacity, voluntariness,
information, and comprehension of the medical
implications (15).
Demonstration that the necessary conditions for
informed consent were fulfilled at the time the
directive was written can be taken—as usual for
written consent to medical treatments—to signify
validity. In order for the validity, so defined, of a
care directive to be comprehensible for the user
(physician), as a surrogate parameter fulfillment of
the above-mentioned requirements for informed
consent must be documented in the advance directive.
It should be noted that this definition of the compre-
hensibility of the validity of advance directives goes
beyond the explicit minimal requirements laid down
in the Advance Directives Act. We therefore investi-
gated whether the directives were signed not only by
their author but also by another person, and if so, by
whom and with what additional text. We regard
explicit documentation of informed consent by a
physician—just as in the normal case of written
consent to treatment—as the gold standard.
Significance
When we refer to the significance of a personal or
proxy advance directive, we mean its applicability to
critical treatment decisions typical for the nursing home
setting, in the sense of the Advance Directives Act. We
differentiated two relevant nursing home scenarios (A
and B) and formulated three typical treatment deci-
sions. Only two of these questions were applied to
scenario A, so there were a total of five combinations of
scenario and decision in which the directives could be
tested (proxy directives: only scenario B):
Scenario A: Life-threatening health crisis with re-
sulting loss of capacity to give valid consent in a patient
previously able to do so
A1 Resuscitation after circulatory arrest?
A2 Hospital admission for treatment of dehydration
resulting from infection with high fever?
Scenario B: Life-threatening health crisis, patient
permanently unable to give valid consent owing to
advanced dementia
B1 Resuscitation after circulatory arrest?
B2 Hospital admission for treatment of dehydration
resulting from infection with high fever?
B3 Percutaneous endoscopic gastrostomy in pro-
gressive dysphagia with weight loss?
The significance of the advance directives in these
five situations was assessed independently by each of
three qualified raters with different professional back-
grounds (S. Sommer, G. Marckmann, J. in der
Schmitten) and classified as follows:
1. The patient implicitly or explicitly wishes the
intervention.
25
20
15
10
5
0
A (n = 100)
B (n = 105)
C (n = 90)
D (n = 145)
E (n = 80)
F (n = 160)
G (n = 70)
H (n = 120)
I (n = 102)
J (n = 43)
K (n = 74)
%
19
4
2
10
8
17
7
16
12
19
22
Homes (residents) N
tot
1089 residents
12.4%
FIGURE 1
Prevalence of advance directives (signed by the resident or by a proxy) in the 11 nursing
homes studied
578
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2. The directive permits no statement regarding the
patient’s will with respect to this scenario and/or
this decision.
3. The intervention is implicitly or indirectly
rejected.
4. The intervention is explicitly or directly rejected.
To measure agreement among the three raters, we
calculated Cohen’s kappa coefficient for each decision
and each pair of raters. The kappa values and their
means are reported here.
Nursing staff adherence
We asked the head nurses whether arrangements had
been made for the residents with regard to resuscitation
attempts in the case of a cardiac arrest, and took this to
indicate knowledge of the existence of advance direc-
tives and the potential need to observe them.
The information provided by the nursing staff was
compared with the stipulations of the directives with
regard to resuscitation: situation A1 for residents
acutely unable to give consent, situation B1 for those
permanently unable to give consent.
To this end, the rating categories 3 and 4 (implicit
and explicit rejection respectively) were amalgamated
and rejection of a CPR attempt was assumed when at
least two of the three raters so decided (majority vote).
The nursing home residents were classified as
acutely or permanently unable to give consent by the
nursing staff, using the seven-point Global Dete -
rioration Scale (GDS) (16). We adopted a conservative
approach and assumed permanent incapacity to give
consent with respect to the decision regarding resus citation
only for those residents with GDS scores of 6 or higher.
Results
Participation rate and sample size
The directors of the 11 nursing homes all agreed to take
part in the study and all reported 100% occupancy (n =
1089 residents) on the appointed day.
Prevalence of advance directives
Altogether, the nursing homes reported that 135 of their
residents (12.4%, range 2% to 22%) had a personal or
proxy advance directive (Figure 1). Of these 135 resi-
dents (or their representatives), 119 (88%) consented to
analysis of the directive.
Thirteen (11%) of these 119 directives had been
signed by patients’ representatives (proxy directives).
Extrapolating this ratio of 11% (proxy) to 89% (person-
al) to the total of 135 advance directives reported by the
nursing homes yields 15 proxy and 120 personal direc-
tives. This corresponds to rates of 11% for personally
signed advance directives and 1.4% for proxy advance
directives among the 1089 residents on the day of the
survey.
Sociodemographic characteristics, formal analysis, validity
Table 1 shows the sociodemographic characteristics of
the nursing home residents with advance directives and
the results of formal analysis of the directives.
Strikingly, most of the directives lacked documen-
tation of validity criteria in the sense of informed
consent. More than half of the directives were signed
only by their author. Six percent of them were co-
signed by a physician, and in only 3% medical advice
was documented.
Significance
The three raters’ assessments of the advance directives
with regard to the five treatment decisions A1, A2, and
B1–3 are shown in Figure 2. Table 2 shows the agree-
ment between the raters.
With regard to the treatment questions in scenario
A (nursing home resident previously able to give
valid consent, but currently unable to do so due to a
TABLE 1
Sociodemographic characteristics of the residents with advance directives
and formal analysis of the directives (n = 119)
Age and sex
Age (mean)
Age when directive written
Women
Time of writing of directive
Before moving into the nursing home
In the year of moving in
Later
Type of directive
Proxy directive (signed by the resident's representative, not
by the resident)
Form
Personally written text
Mixed or unclear
Length of directive
Less than ½ page
½–2 pages
>2 pages
Validity according to the criteria of informed consent
a) Documentation of advice on completing the directive and of
ability to give consent by a physician (gold standard)
b) Documentation of ability to give consent by a physician
c) Documentation of ability to give consent by a lawyer
d) Documentation of ability to give consent (unclear by whom)
e) Signature of a (any) third party with no reference to ability
to give consent or similar
Signed by a (any) third party ( a–e)
86 years
(range: 60–100)
83 years
(range: 67–99)
65%
50%
10%
40%
11%
80%
12%
8%
31%
54%
14%
3%
3%
20%
3%
19%
48%
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life-threatening health crisis), inter-rater agreement was
high (mean kappa >0.8) and the vast majority of
directives gave no answer (94% and 95%).
The findings were quite different for pre-existing
(permanent) inability to give valid consent owing to ad-
vanced dementia (scenario B). The inter-rater agree-
ments were low overall (mean kappa <0.43), and the
ratings of the directives were often mixed (45% to
67%). The raters agreed that one fifth of the advance
directives contained no answers to the three treatment
questions in this scenario, and that one fifth to one third
of the directives rejected the various interventions.
Nursing staff adherence
The raters judged that 23 of the 119 advance directives
analyzed implied that the nursing home resident did not
wish to be resuscitated (categories 3 and 4 in Figure 3).
This assessment was unanimous in 14 cases and a ma-
jority decision in 9 cases. In 14 (61%) of these 23 cases
(including 8 with unanimous agreement) there was no
corresponding arrangement on the part of the nursing
staff (category 4 in Figure 3); thus, in the event of a
cardiac arrest the standard procedure would have had to
be followed, i.e., these residents would have had to be
resuscitated against their documented will.
Discussion
This study was the first in Germany to investigate the
prevalence and the quality criteria of advance directives
in nursing homes for the elderly, and to our knowledge
the first worldwide to examine nursing staff adherence
to such directives. In 2007 we succeeded in carrying
out a complete survey of all 11 nursing homes in a city
in the German federal state of North Rhine–Westphalia,
with a total of 1089 residents.
The lively public discussion of the Advance Direc-
tives Act since its inception is likely to have somewhat
increased the prevalence of such directives. For the
reasons described at the beginning of this article, how-
ever, the new legislation can hardly be expected to
bring about quantitative or qualitative improvement.
Our survey offers a methodologically robust platform
for investigation of the effect of the legislation passed
in 2009 on the dissemination and quality of advance
directives.
Almost 9 out of 10 nursing home residents in the city
we surveyed had no advance directive. This corresponds
%
100
90
80
70
60
50
40
30
20
10
0
6
5
35
94
95
45
62
47
20
20
20
18
33
A1 A2 B1 B2 B3
Scenario
Unanimously:
not specified
Unanimously: rejection
Heterogenous rating
FIGURE 2
The three raters’ interpretation of the wording of the
advance directives analyzed with regard to five treatment
scenarios. “Implicit” and “explicit” rejection were combined into a
single category.
Sample (out of a total of 119 directives analyzed):
A1–A2:
98 (13 proxy directives, 8 ratings missing)
B1:
115 (4 ratings missing)
B2–B3:
116 (3 ratings missing)
Scenarios A1 and A2:
Patient temporarily unable to give valid consent: resuscitation after
cardiac arrest (A1), hospital admission for management of infection
(A2)
Scenarios B1 to B3:
Patient permanently unable to give valid consent: resuscitation after
cardiac arrest (B1), hospital admission for management of infection
(B2), percutaneous endoscopic gastrostomy in dysphagia (B2)
TABLE 2
Inter-rater agreement (measured using Cohen's kappa coefficient) by
treatment decision (n = 117)
A
kappa value of 1 shows perfect inter-rater agreement; a kappa value of 0 shows purely random results.
Scenarios A1, A2: Resuscitation after cardiac arrest (A1);
hospital admission for management of infection (A2) in the case of acute inability to give consent.
Scenarios B1–B3: Resuscitation after cardiac arrest (B1);
hospital admission for management of infection (B2);
percutaneous endoscopic gastrostomy for dysphagia (B3) in the case of permanent inability to give consent.
Scenario
A1
A2
B1
B2
B3
Kappa
Rater 1 vs 2
0.849
0.883
0.358
0.154
0.439
Kappa
Rater 1 vs 3
0.823
0.850
0.386
0.337
0.436
Kappa
Rater 2 vs 3
0.828
0.858
0.525
0.205
0.353
Arithmetic mean
0.833
0.864
0.423
0.232
0.409
580
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to figures previously reported from surveys in Germany
(7) and elsewhere (17). The present study therefore
supports the finding that advance directives are
completed by only a small proportion of the popu-
lation—even in nursing homes, where around one third
of the residents die each year. The prevalence of such
directives varies considerably from home to home,
indicating that local factors play a large part.
For 1.4% of the nursing home residents we found
so-called proxy advance directives. These have been
sporadically described in the USA (14), but not yet in
Germany. Proxy directives merit and urgently require
closer attention from researchers.
Too little heed has been paid to the validity of
advance directives, here understood as a documentation
of a medical consultation. Given that the documen-
tation of a process of explanation and comprehension is
acknowledged as a basic requirement for informed con-
sent to medical treatments, it seems ethically dubious,
not to mention perilous for the patient (albeit legally
permissible according to the German Advance Direc-
tives Act), to regard advance directives as binding even
if they feature no indication that such a process took
place. The present survey demonstrates, in agreement
with data from the USA (18), that this was the excep-
tion in 2007: only 3% of the directives contained docu-
mentation of medical advice.
The fact that the validity of many advance directives
cannot be assessed makes it difficult for decision-
makers to take irreversible actions based on their con-
tent. This may contribute to the still widespread profes-
sional skepticism with regard to these documents.
Inability to assess the validity of advance directives
will continue to have no consequences in practice,
however, until their significance with regard to clini-
cally relevant decisions increases from its hitherto very
low level. Thus, the case of a sudden health crisis with
acute (new) incapacity to give valid consent remains
completely unaddressed in the majority of directives
(80% of which are written using established, widely
available forms)—as if all nursing home residents were
in agreement with receiving the standard acute medical
treatment, i.e., all feasible life-prolonging interven-
tions. However, surveys of senior citizens on the sub-
ject of treatment limitation (8, 19), as yet unpublished
data from a study of our own (20), and findings from
emergency medical care (21) indicate that many seniors
prefer considerable restriction of life-prolonging
treatment.
Regarding permanent incapacity for consent, the
three raters varied greatly in their judgment of advance
directives with respect to their significance for concrete
treatment questions—meaning that many such direc-
tives will be of little assistance in deciding on the ap-
propriate treatment if and when the time comes. This
unsatisfactory state of affairs is not likely to improve
until advance directives are regularly formulated on the
basis of discussions with a professional. And besides
validity, it is important to modify the forms used for di-
rectives so that they contain statements specifying what
should be done (or left undone) in practically relevant
situations.
As a way of determining how closely the terms of
advance directives are observed, we investigated
whether nursing home residents’ wishes not to be resus-
citated were reflected by corresponding arrangements
on the part of the nursing staff. For 14 of the 23
residents whose directives stated that no attempt at
Number of directives
60
50
40
30
20
10
0
1 2 3 4
Meaning of directive vs. agreement of nursing stuff
Unable to give consent
Able to give consent
10
7
17
9
13
1
48
FIGURE 3
Nursing staff adherence to advance directives as exemplified
by attempted resuscitation in the event of cardiac arrest
(n = 105). Eleven directives could no longer be attributed to the
correct residents owing to errors in pseudonymization, and in three
further cases the nursing staff could not evaluate the severity of
dementia.
1: Advance directive and nursing staff (congruently):
No instructions / no arrangement
resuscitation
2: Advance directive: no instructions;
nursing staff: “do not resuscitate” arrangement
3: Advance directive and nursing staff (congruently):
Instruction / arrangement: “do not resuscitate”
4: Advance directive: “do not resuscitate”;
nursing staff: no arrangement
resuscitation
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resuscitation should be made if they suffered a cardiac
arrest, no such arrangement existed. Therefore it has to
be assumed that in the event of a cardiac arrest the stan-
dard nursing home procedure would be followed and
these residents would be resuscitated against their
documented will.
Although the method we used—and the imprecise
wording of many directives (in only 8 of the 14 cases
were all three raters in agreement)—enables only a first
approach to the question of the adherence to advance
directives in care facilities for the elderly, it can be
stated—confirming the experience of family phy -
sicians—that observation of a clearly formulated
advance directive by nursing home staff is not the rule.
This experience points to far-reaching structural defi-
cits in the handling of advance directives in nursing
homes.
Limitations
Our study has a number of limitations. For instance, al-
though we succeeded in carrying out a complete survey
of all of the nursing homes in the city in question and
achieved a participation rate of 88% of the residents
with advance directives, variation among the homes
was high and the results may not be representative for
other German regions. Furthermore, some directives
may not have come to light—although one would have
to wonder what function advance directives have at all
if they can be overlooked when expressly sought by
nursing home administrators.
Conclusion
This survey carried out in 2007, four decades since ad-
vance directives began to be widely propagated (22),
paints a disturbing picture of the implementation of
such directives in nursing homes. Since no substantial
change in the status quo can be expected following the
passage of the German Advance Directives Act in
2009, the question is what needs to be done so that
elderly and multimorbid persons, in particular, are
regularly given the opportunity to place valid, effective
limits on life-prolonging treatment according to their
wishes. The following options are being discussed:
Visits to nursing home residents by physicians (or
non-physicians) trained to offer advice on ad-
vance directives to interested residents and their
relatives (23)
Regional standardization of the forms used for
advance directives and physician orders for life-
sustaining treatment (POLST) (24)
Measures to ensure adherence to advance direc-
tives by those at all stages of the care chain (25).
The concept of regional advance care planning
programs (26, 27) meets these demands but is not yet
widespread in Germany. It should be investigated
whether such initiatives can succeed in creating the
necessary conditions for significant, valid advance
directives and their implementation.
Acknowledgment
We are grateful to Prof. Stephan Rixen (University of Bayreuth) for critical
perusal of the manuscript and for valuable suggestions.
Conflict of interest statement
The authors declare that they have no conflict of interests.
Manuscript received on 30 January 2012, revised version accepted on
22 May 2012.
Translated from the original German by David Roseveare.
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KEY MESSAGES
The prevalence, quality and observation of advance directives in German
nursing homes for senior citizens have not yet been empirically studied.
A complete survey of the 11 nursing homes in one city in 2007 revealed that
12.4% of the residents possessed advance directives, including 1.4% whose
directives had been signed not by them personally but by their representa -
tives (proxy directives).
The validity of the directives, in the sense of documentation of an informed
consent process, was mostly not readily clear to third parties, and the signifi-
cance of the directives was limited; in particular, typical emergency situations
involving acute inability to give consent are usually not regulated.
In 14 of the 23 cases in which the advance directive was interpreted as
meaning that resuscitation should not be attempted in the case of cardiac
arrest, there was no corresponding arrangement on the part of the nursing
staff; we regard this as a sign of structural deficits in the implementation of
such directives in nursing homes.
Little indicates that the Advance Directives Act of 2009 will bring about any
substantial lasting improvement in this unsatisfactory state of affairs. How-
ever, new impulses could be provided by regional advance care planning
programs that take a process- and system-oriented approach.
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Corresponding author
Dr. med. Jürgen in der Schmitten, MPH
Institut für Allgemeinmedizin
Universitätsklinik Düsseldorf
Moorenstr. 5
40225 Düsseldorf, Germany
jids@med.uni-duesseldorf.de
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    • "th an advance care directive is much higher than observed in another German study from 2007, where only 11% of nursing home residents had an advance care directive. Since then, advance care directives have been actively promoted in the media. This study also found that most advance care directives were invalid and disregarded by nursing home staff.[35] This might explain while unlike in a Dutch study with nursing home residents, where 62% had advance care directive, no effect of advance care directives was found on not 'dying in a hospital'.[36] One reason for the low proportion of patients with advance care directive in our sample that did not affect hospital admission may be the lack"
    [Show abstract] [Hide abstract] ABSTRACT: Background Although determinants of place of death have been investigated in several studies, there is a lack of knowledge on factors associated with dying at home from the general practice perspective. Objectives To identify factors associated with dying at home for patients in German general practice. Methods In a retrospective study, general practitioners of 30 general practices were asked to provide data for all patients aged 18 years or older who died within the last 12 months, using a self-developed questionnaire. 'Dying in hospital' was defined as dying in hospital or hospice and 'dying at home' as dying at one's usual residence including the nursing home. Multiple logistic regression analyses were used to determine factors associated with 'dying at home'; odds ratios (ORs) and their 95% confidence intervals (CI) were calculated as measures of effect size. Results Of 439 deceased patients, 52.2% died at home, and 47.8% died in hospital or hospice. Determinants for dying at home were patients' care in the last 48 hours of life by family members (OR: 7.8, 95% CI: 3.4-18.0), by general practitioners (GPs) (OR: 7.3, 4.2-12.9) and living in a nursing home (OR: 3.8, 1.7-8.3). In the adjusted model, low comorbidity was positively associated (OR: 3.2, 1.4-7.0), and low functional health status (Karnofsky performance status) was negatively associated with dying at home (OR: 0.3, 0.1-0.7). Conclusion Apart from patient-related factors such as comorbidity and health status, care by family members and GPs respectively, were determinants of dying at home.
    Full-text · Article · Jan 2016
    • "Ein Fünftel der untersuchten Patienten kam aus Einrichtungen der stationären Seniorenpflege. Sommer et al. [16] publizierten im Jahr 2012 eine deskriptive Querschnittsvollerhebung in 11 Senioreneinrichtungen einer Großstadt. Nur bei 11 % der Bewohner lag eine Patientenverfügung vor, die Aussagekraft der analysierten Patientenverfügungen war beschränkt. "
    [Show abstract] [Hide abstract] ABSTRACT: Intensive care medicine (ICM) is increasingly utilized by a growing number of critically ill patients worldwide. The reasons for this are an increasingly ageing and multimorbid population and technological improvements in ICM. Inappropriate patient admissions to the intensive care unit (ICU) can be a threat to rational resource allocation and to patient autonomy. In this study, the incidence, characteristics, and resource utilization of patients inappropriately admitted to ICUs are studied. This prospective study included all consecutive patients admitted from 01 September 2012 to 31 August 2013 to the Department of Intensive Care Medicine of a German university hospital comprised of 10 ICUs and 120 beds. Inappropriate admission was defined according to category 4B of the recommendations of the Society of Critical Care Medicine (SCCM; "futility of ICU treatment" or "ICU declined by patient") and was determined in each suspected case by structured group discussions between the study team and all involved care givers including the referring team. In all, 66 of 6452 ICU admissions (1 %) were suspected to have been inappropriate on retrospective evaluation the day after admission. In 50 patients (0.8 %), an interdisciplinary consensus was reached on the inappropriateness of the ICU admission. Of these 50 patients, 41 (82 %) had previously declined ICU treatment in principle. This information was based on the patient's presumed wish as expressed by next of kin (56 %) or in a written advanced directive (26 %). In 9 patients (18 %), ICU treatment was considered futile. In all cases, a lack of information regarding a patient's wishes or clinical prognosis was the reason for inappropriate ICU admission. In this study, patients were regularly admitted to the ICU despite their contrary wish/directive or an unfavorable clinical condition. Although this was registered in only 1 % of all admissions, optimizing preICU admission information flow with regard to relevant exclusion criteria not only helps respect patient autonomy but also allows for more adequate resource allocation.
    Full-text · Article · Sep 2015
    • "Dass im hausärztlichen Kontext Patientenverfügungen entstehen, ist erfreulich. Zu deren Qualität, die in früheren Untersuchungen als sehr unterschiedlich beschrieben wurde [15], kann im Rahmen dieser Erhebung keine Aussage getroffen werden. "
    [Show abstract] [Hide abstract] ABSTRACT: Hintergrund Über die hausärztliche Versorgung von Menschen in ihrer letzten Lebensphase gibt es keine ausreichenden Kenntnisse. Ziel der HAVEL-Studie war, diesen Versorgungsbereich zu beschreiben. Methoden In 30 Hausarztpraxen wurden Daten zu allen in den letzten 12 Monaten vor Beginn der Studie eines natürlichen Todes verstorbenen Patienten (n = 451) mit einem selbst entwickelten Erhebungsbogen erfasst und mit Daten aus der Hospiz- und Palliativ-Erfassung (HOPE) verglichen. Ergebnisse Die Betreuungsfrequenz nahm zum Lebensende hin zu. Bei 48 % der Patienten war der Hausarzt in den letzten 48 h vor dem Tod in die Betreuung involviert. Das Krankheitsspektrum zeigte eine Dominanz der chronischen Erkrankungen (des Herz-Kreislauf-Systems, der Psyche u. a.) und eine andere Ausprägung von Symptomen als bei Patienten in spezialisierten Versorgungsstrukturen. Schlussfolgerung Auch wenn viele Patienten im Krankenhaus versterben, begleiten Hausärzte einen großen Teil ihrer Patienten bis zum Lebensende. Charakteristika und Rahmenbedingungen der hausärztlichen Versorgung sollten in den Curricula der medizinischen Aus- und Weiterbildung von spezialisierten Versorgungformen differenziert betrachtet und in der Definition der Palliativsituation berücksichtigt werden.
    Full-text · Article · Dec 2013
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