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End-of-life treatment decisions in nursing home residents
dying with dementia in the Netherlands
Simone A. Hendriks
1
, Martin Smalbrugge
1
, Luc Deliens
2
, Raymond T. C. M. Koopmans
3,4,5
,
Bregje D. Onwuteaka-Philipsen
6
, Cees M. P. M. Hertogh
1
and Jenny T. van der Steen
3,7
1
Department of General Practice and Elderly Care Medicine and EMGO+ Institute for Health and Care Research, VUmc Expertise Center
for Palliative Care, VU University Medical Center, Amsterdam, The Netherlands
2
End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel, Brussels, Belgium
3
Department of Primary care and Community Care, Radboud University Medical Center, Nijmegen, The Netherlands
4
Joachim and Anna, Center for Specialized Geriatric Care, Nijmegen, The Netherlands
5
Radboud Alzheimer Centre, Nijmegen, The Netherlands
6
Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VUmc Expertise Center for Palliative Care,
VU University Medical Center, Amsterdam, The Netherlands
7
Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, The Netherlands
Correspondence to: S. A. Hendriks, E-mail: s.hendriks@vumc.nl
Objective: The objective was to describe end-of-life treatment decisions for patients dying with dementia
in various stages of dementia in long-term care facilities in the Netherlands with elderly care physicians
responsible for treatment and care.
Methods: We present data collected in the nationally representative Dutch End of Life in Dementia
study (2007–2011). Within 2 weeks after death, 103 physicians completed questionnaires about the last
phase of life in 330 residents with dementia who resided in 1 of 34 participating long-term care facilities.
We used descriptive statistics.
Results: Advance directives were rare (4.9%). A minority was hospitalized (8.0%) in the last month
(mainly for fractures) or received antibiotics (24.2%) in the last week (mainly for pneumonia). Four
residents received tube feeding or rehydration therapy in the last week. In almost half of the residents
(42.3%), decisions were made not to start potentially life-prolonging treatment such as hospital transfer
and artificial nutrition and hydration. In more than half of the residents (53.7%), decisions were made
to withdraw potentially life-prolonging treatment such as artificial nutrition and hydration and
medication. Antibiotics were more frequently prescribed for residents with less advanced dementia,
but otherwise there were no differences in treatment decisions between residents with advanced and less
advanced dementia.
Conclusions: Physicians often withhold potentially burdensome life-prolonging treatment in nursing
home residents in all stages of dementia in the Netherlands. This suggests that the physicians feel that
a palliative care approach is appropriate at the end of life in dementia in long-term care. Copyright #
2016 John Wiley & Sons, Ltd.
Key words: Dementia; end of life; treatment decisions; palliative care; long-term care
History: Received 17 June 2016; Accepted 01 December 2016; Published online in Wiley Online Library (wileyonlinelibrary.
com)
DOI: 10.1002/gps.4650
Copyright #2016 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2016
RESEARCH ARTICLE
Introduction
In our greying societies, many older people, up to one
in three, will die with or from dementia (Weuve et al.
2014). Because of the loss of cognitive abilities, most
are unable to make treatment decisions at the end of
life. In many countries, more than half of people with
dementia die in long-term care settings (Houttekier
et al. 2010).
Mitchell et al. (2009) reported in 2009 that nursing
home residents with advanced dementia frequently
underwent burdensome interventions in nursing
homes in the USA and recommended that residents
with advanced dementia need a palliative care ap-
proach. Although a palliative care approach is more
generally accepted in later stages of dementia, a pallia-
tive care approach may also be justified earlier (van
der Steen et al. 2014a).
In the 90s, a palliative approach was introduced to
the Dutch nursing home setting (Hertogh 2006;
Hertogh & Ribbe 1996), and nowadays, this approach
is generally accepted in the Netherlands for residents
admitted because of dementia (Hendriks et al. 2014;
Bouwstra et al. 2015; Hertogh & Ribbe 1996). In
Dutch nursing homes, certified elderly care physicians
are on the staff, usually know the patient and family
well, and have a strong and often decisive influence
on decision making (Helton et al. 2006; Helton et al.
2011; Koopmans et al. 2010). Besides providing symp-
tom management, elderly care physicians may facili-
tate discussions on advance care planning and
develop care plans (Hendriks et al. 2014; Hertogh
2006).
The majority of residents with dementia in Dutch
nursing homes have a palliative care goal (Hendriks
et al. 2014; Bouwstra et al. 2015; van Soest-Poortvliet
et al. 2014). Such a goal may frame decisions to with-
hold potentially burdensome life-prolonging treat-
ment such as resuscitation, hospitalization, drugs and
artificial nutrition and hydration. However, no
nationally representative data about treatment
decisions at the end of life of nursing home residents
with various stages of dementia have been available
so far. In this article, we describe end-of-life treatment
decisions in nursing home residents dying in various
stages of dementia in Dutch long-term care facilities
and cared for by elderly care physicians.
Methods
We analysed data collected in the Dutch End of Life in
Dementia study (DEOLD: assessments 2007–2010;
monitoring of survival up to 2011) (van der Steen
et al. 2014b). The primary aims of DEOLD-study
were to describe quality of dying and end-of-life care
and overall quality of care provided as evaluated by
families and assess associated factors. In the DEOLD
study, 34 long-term care facilities participated, and
the facilities belonged to a total of 19 care organiza-
tions (sharing physician teams). The study was repre-
sentative for the Netherlands in terms of geographic
distribution (van der Steen et al. 2014b). One of
two observational designs was used per care organiza-
tion: a prospective recruitment of residents (upon
admission, with follow-up until death or until the
end of data collection) or a retrospective (after death)
recruitment.
Residents with a dementia diagnosis admitted to a
psychogeriatric ward (almost all dementia) were
enrolled. Characteristics of the residents have been
published elsewhere; most residents (66.7%) were fe-
male, mean age at death was 85.2 years (Hendriks
et al. 2016b), and most residents (91.1%) had a palli-
ative care goal at the day of death (van Soest-Poortvliet
et al. 2014). The study protocol was approved by the
Medical Ethics Review Committee of the VU
University Medical Center Amsterdam, and written
informed consent was obtained from the families.
Data collection
Within 2 weeks after death, 103 elderly care physicians
completed questionnaires about 330 of 339 residents
with dementia who died within the period of data col-
lection (resident assessments up to summer 2010)
(Hendriks et al. 2016a; van der Steen et al. 2014b).
In the prospective design, 218 residents died during
the assessment period, and a physician after-death as-
sessment was completed for 213 residents; in the ret-
rospective design, 117 residents were enrolled
retrospectively after death.
Measurements
Advanced dementia (vs less advanced dementia) was
defined as a Cognitive Performance Scale score
(Morris et al. 1994) of 5 or 6 and a Global Deteriora-
tion Scale (Reisberg et al. 1982) score of 7 for compa-
rability with other studies such as CASCADE (Mitchell
et al. 2009). The physicians reported resident deci-
sional capacity regarding preferred medical treatment
as competent, partly competent or incompetent.
Physicians reported on decision making and con-
text from the viewpoint of the treating physician. We
S. A. Hendriks et al.
Copyright #2016 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2016
report whether residents had an advance directive
upon admission. Physicians recorded the main care
goal using the pre-structured items life prolongation,
maintaining or improving of functioning, palliative
and symptomatic care goal (van der Steen et al.
2013), other and no care goal. These main care goals
are defined by the Dutch association of elderly care
physicians and social geriatricians ‘Verenso’
(Verenso, 2007). Palliative and symptomatic goals
both refer to comfort, quality of life and well-being
but differ as to whether prolongation of life is desir-
able. Because this distinction is not well integrated in
practice (van Soest-Poortvliet et al., 2015) and un-
known in other countries than the Netherlands, for
analyses and presentation, we combined the pallia-
tive and the symptomatic care goals and used for
the combined goals the term ‘palliative care goal’.
We report on treatment decisions and the reason
for treatment. We distinguished the following six
treatments or actions: at the time of death, resuscita-
tion; during the last month of life, hospitalization;
and during the last week, any antibiotics, intrave-
nous fluids, subcutaneous fluid infusion and tube
feeding. Further, physicians reported about decisions
not to start treatment or to withdraw treatment
shortly before death, including open-ended items to
specify the treatment.
Statistical analyses
We report descriptive statistics and explored and re-
ported any possible differences between residents with
advanced and less advanced dementia. In all analyses,
fewer than 5% of values were missing. Analyses were
performed with SPSS 20.0.0.
Results
Characteristics
Less than half of the residents (43.2%) had advanced
dementia upon death. A substantial minority of resi-
dents (36.5%) had been partly competent for decision
making about medical treatment upon admission, and
this decreased to 13.8% in the last week of life
(Table 1). For residents with less advanced dementia,
the proportion that had been (partly) competent for
decision making was significantly larger than for resi-
dents with advanced dementia (p<0.001 upon admis-
sion and p<0.001 in the last week of life).
Treatment decision making and context
Of all residents, 4.9% (16/325) had an advance direc-
tive: for example, refusal of treatment such as no re-
suscitation, no artificial nutrition and hydration and
no hospitalization. Of the 16 residents, four residents
also had a wish for euthanasia. One of these residents
had a wish for physician assisted death at baseline
supported by an advance directive (formalized by a
notary), and the physician commented that his/her
death was due to physician-assisted suicide. Further,
the attending physician found the resident competent
for decision making in the last week. For the other
three residents, a natural cause of death was
reported.
Almost all residents had a palliative care goal on
the day of death, and this referred to both residents
with advanced dementia (94.2%) and residents with
less advanced dementia (88.9%; no significant differ-
ence; Table 2). Resuscitation at the moment of death
was rare (two residents; both had less advanced de-
mentia), as was hospitalization in the last month
(8.0%) and in the last week of life (1.5%). The most
frequently reported reason for hospitalization was a
fracture (33%; 7/21, 5 missing). Of the treatments,
antibiotics were most commonly provided (24.2%
in the last week). The treatment decisions did not dif-
fer between residents with advanced and less ad-
vanced dementia, except that residents with less
advanced dementia received antibiotics significantly
more often than residents with advanced dementia
(Table 2). The most frequently reported reasons for
antibiotic use were pneumonia (50.6%; 39/77 who
received antibiotics) and urinary tract infection
(33.8%; 26/77). Antibiotics were also provided for
skin infections (3.9%; 3/77) and for other reasons
(12%; 9/77). Four residents received tube feeding,
and the reasons were as follows: vomiting due to an
incident cerebrovascular accident, general malaise
due to sepsis, one resident received tube feeding for
a year because of a minimally conscious state and un-
known. Fourteen residents received rehydration ther-
apy, and the reasons for therapy were as follows:
dehydration (n= 8), pneumonia (n= 3), diarrhoea
(n= 1) and one missing.
In 42.3% of the residents, decisions were made not
to start treatment shortly before death, and in 53.7%
of the residents, decisions were made to withdraw
treatment shortly before death (Table 2). The type of
decisions not to start treatment that were reported
most frequently (in 135 residents) were decisions not
to start with artificial nutrition and hydration
(n= 96) or antibiotics (n= 34) and decisions not to
End-of-life treatment decisions in dementia
Copyright #2016 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2016
hospitalize (n= 17). In case of withdrawing treatment,
the type of treatments that were most frequently with-
drawn was as follows (in 172 residents): withdrawing
all oral drugs (e.g. in case of no longer able to swallow;
n= 134), withdraw antibiotics (n= 31), other drugs
(n= 38) and withdraw rehydration or tube feeding
(n= 7).
Discussion
In this article, we describe end-of-life treatment deci-
sions of nursing home residents dying with dementia
in advanced and less advanced stages in long-term care
settings in the Netherlands. We found in this study in
which 91.1% of the residents had a palliative care goal
Table 1 Residents’characteristics
Total
N= 330
Residents with
advanced
dementia
n= 139
Residents with
less advanced
dementia
n= 183
Differences
(t-test or Fisher’s exact test)
n%n%n%p-value
Age at death, mean (SD) 330 85.2 (7.4)
a
139 84.1 (7.8) 183 85.8 (7.1) Mean diff 1.7; 0.038
Ethnic origin other than Dutch 7 2.2 2 1.5 3 1.7 1.000
Advanced dementia 1 month before death 139 43.2
a
Competent for decisions on preferred medical
treatment
Upon admission <0.001
- Yes 6 1.9 0 0 5 2.8
- In part 118 36.5 41 30.4 77 42.5
- No 199 61.6 94 69.6 99 54.7
In the last week of life <0.001
- Yes 4 1.2 2 1.4 2 1.4
- In part 45 13.8 3 2.2 42 23.2
- No 276 84.9 134 96.4 137 75.7
SD, standard deviation.
Data about the severity of the dementia was missing for eight residents.
a
Age at death and advanced dementia 1 month before death has also been reported elsewhere (Hendriks, Smalbrugge, Hertogh, & van der Steen
2016b).
Table 2 Decision making and context in the last phase of life
Total
N= 330
Residents with
advanced
dementia
n= 139
Residents with
less advanced
dementia
n= 183 Differences
(Fisher’s exact test)
n%n%n/N%p-value
Advance directives
Resident had an advance directive according to physician, upon admission 16 4.9 12 6.6 4 2.9 0.195
Care goals at the day of death 0.424
Life prolongation 3 0.9 0 0 2 1.1
Maintaining or improving of functioning 10 3.1 2 1.4 8 4.4
Palliative(aimed at well-being and quality of life) 296 91.1 131 94.2 160 88.9
Global goals of treatment had not been assessed 13 4.0 1 0.7 2 1.1
Other 3 0.9 5 3.6 8 4.4
Resuscitation attempt 2 0.6 0 0.0 2 1.1 0.508
Hospitalization
Admission last month of life 26 8.0 7 5.1 18 9.8 0.142
Admission last week of life 5 1.5 0 0.0 2.7 0.073
Specific treatment decisions in the last week of life
Any antibiotics 78 24.2 24 17.6 52 28.9 0.024
Tube feeding 4 1.2 1 0.7 2 1.2 1.000
Rehydration (subcutaneous fluid infusion or intravenous fluids) 14 4.3 4 2.9 8 4.4 0.564
Decisions
Any decision to not start treatment shortly before death 135 42.3 51 37.2 82 46.6 0.107
Any decision to withdraw treatment shortly before death 174 53.7 67 48.6 103 57.2 0.141
Data about the severity of the dementia was missing for eight residents.
S. A. Hendriks et al.
Copyright #2016 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2016
at the day of death (van Soest-Poortvliet et al. 2014) and
low rates of interventions for residents with advanced
dementia as well as for residents with less advanced
dementia. Most residents did not have written advance
directives when they were admitted to the long-term
care facility. Also in Flanders, Belgium, only 8.4% of
nursing home residents with dementia had an advance
directive (De Gendt et al. 2013). In contrast with
Europe, in the USA, written advance directives are com-
mon, with 71–72% directives reported in older people
at the day of death (Silveira et al. 2014; Teno et al.
2007). The percentages of advance directives may be in-
fluenced by culture and type of organizational models.
Even though advance directives are rare in the
Netherlands, earlier research found that the
Netherlands, compared with the USA, has a culture
in which forgoing life-prolonging medical interven-
tions is accepted practice and in which quality of life
is an important aspect in end-of-life decisions and of-
ten outweighs life prolongation (Helton et al. 2006).
Consistently, we found low rates of life-prolonging in-
terventions for residents with advanced dementia as
well as for residents with less advanced dementia.
Because most residents were not competent for
decision making anymore, most discussions about
end-of-life treatment decisions take place with proxy
decision makers. There were multiple contact mo-
ments during nursing home stay between physicians,
nurses and families in which care goals and treatment
decisions were discussed (Hendriks et al. 2014).
Resident’s condition, wishes expressed by resident or
family, family’s willingness, family involvement and
general nursing home policy guides physicians in initi-
ating discussions (van Soest-Poortvliet et al. 2015).
We found a smaller proportion of residents with
advanced dementia who were hospitalized in the last
week of life than in the US CASCADE study of
Mitchell et al. (2009) (0% were hospitalized in the
Netherlands vs 9% in the USA in the last week of life)
(Mitchell et al. 2009). Further, we found a smaller pro-
portion of residents who received tube feeding or par-
enteral therapy. In the Netherlands, it is common
practice not to start artificial nutrition and hydration
in residents with dementia in a nursing home setting
(Mehr et al. 2003; Pasman et al. 2004), because physi-
cians may accept the reduction of food and fluids in-
take; they may consider this problem inherent to
dementia and that interventions such as artificial food
or fluids may not prolong survival or improve quality
of life (Hendriks et al., 2015; Pasman et al. 2004; Teno
et al. 2012).
In our study, we found that antibiotics were the
most frequently provided treatment. About a quarter
(24.2%) of the residents received antibiotics in the last
week of life, and the most frequently reported reasons
for antibiotic use were pneumonia and a urinary tract
infection. The severity of dementia has been associated
with forgoing antibiotic treatment in other studies
(van der Maaden et al. 2016), and we also found that
residents with advanced dementia received antibiotics
less frequently than residents with less advanced
dementia. Clinical decisions about prescribing or
withholding antibiotics are surrounded by uncer-
tainties and therefore difficult to make. Because effects
of antibiotics on survival are probably limited to only
few patients (van der Steen et al. 2012), especially in
advanced dementia, and it remains unclear whether
antibiotics actually enhance comfort (van der Steen
2011). Probable benefits of antibiotics must be
weighed against potential adverse effects such as
burdensome side effects, prolonging of the dying pro-
cess and antibiotic resistancy (van Buul et al. 2012; van
der Maaden et al., 2016; van der Maaden et al. 2015;
van der Steen et al. 2012).
Health professionals often face dilemmas around
whether the time has come not to start or to withdraw
curative treatment because it does not add to quality of
life (Goodman et al. 2015; Stewart et al. 1999). We
found that decisions not to start treatment related
mainly to artificial nutrition and hydration fluids,
treatment with antibiotics and hospital transfers. We
found that decisions to withdraw treatment related
particularly to withdrawal of oral drugs shortly before
death, possibly at the moment that residents were in
very poor condition and were no longer able to swal-
low. A study from Norway in a general nursing home
population also found that changes in drug treatment
were made just at the day of death (Jansen et al. 2014).
Limitations
The present study has some limitations that warrant
comment. First, the time frame ‘shortly before death’
for decision making was not defined. Second, we used
data from both prospective and retrospective data col-
lection. The reason for combining prospective data
with retrospective data was because we could not
follow up all cases until death (right censoring) with
prospective data collection. This combination of per-
spectives avoids the risk of recall bias involved in fully
retrospective studies and provides the benefit of un-
derstanding how the truncated longitudinal sample
differs from a representative sample of residents who
died with dementia in Dutch nursing homes (van
der Steen et al. 2014b). Furthermore, we investigated
End-of-life treatment decisions in dementia
Copyright #2016 John Wiley & Sons, Ltd. Int J Geriatr Psychiatry 2016
the differences between the two cohorts, and the only
significant difference found was a higher proportion of
withdrawing treatment in the prospective design
(59.2%) than in the retrospective design (43.4%;
p= 0.006). Further, the proportion of residents with
advanced dementia was lower in the prospective de-
sign (38.1%) than in the retrospective design (52.7%;
p= 0.012); (Hendriks et al. 2016b) however, we sepa-
rately reported the results for residents with advanced
and less advanced dementia.
Recommendation
End-of-life treatment decisions may affect the way that
patients with dementia live their last months of life.
Therefore, professional care givers should respond
early to palliative care needs, which may help to en-
hance comfort. Discussions with patients and families
about palliative care needs and how to deal with
multimorbidity and drug therapy at the end of life in
nursing home residents with dementia are of great im-
portance. Future qualitative research, in particular
participant observation research, may explore how el-
derly care physicians communicate with patients and
families about treatment decisions in the context of
advance care planning and may explore the rationale
of care actions at the end of life and how the severity
of the dementia plays a role.
Conclusion
Advance directives are rare in nursing home residents
with dementia in the Netherlands.
Only few residents are hospitalized or undergo
potentially burdensome interventions such as tube
feeding or artificial nutrition and hydration. In addi-
tion, residents with advanced dementia as well as
residents with less advanced dementia rarely undergo
burdensome interventions. Physicians and families
often agree upon a palliative care goal and are inclined
to withhold and to forgo potentially burdensome life-
prolonging treatment. This suggests that they feel that
a palliative care approach is appropriate when death is
expected in all stages of dementia in long-term care.
Conflict of interest
The study’s sponsors had no role in the design, subject
recruitment, data collection, analysis or preparation of
the paper. None of the authors have conflicts of
interest or dual commitments. The corresponding
author guarantees that all authors contributed
substantially to the manuscript.
Key points
•Residents of Dutch long-term care facilities
with advanced as well as less advanced dementia
rarely undergo potentially burdensome life-
prolonging treatment.
•Treatment decisions do not differ between
residents with advanced and less advanced
dementia, except that residents with less
advanced dementia receive more antibiotics
(than residents with advanced dementia).
•Decisions not to start or to withdraw treatment
shortly before death mainly relate to artificial
nutrition and hydration and medication.
Acknowledgements
This study was supported by a career award for J. T. S.
of the Netherlands Organisation for Scientific
Research (NWO; Veni grant number 916.66.073); by
the ZonMw The Netherlands Organisation for Health
Research and Development, grant number 1151.0001;
by the VU University Medical Center, EMGO Institute
for Health and Care Research, Department of General
Practice and Elderly Care Medicine, and Department
of Public and Occupational Health, Amsterdam, the
Netherlands; and by a grant from the SBOH (the
employer for GP medicine and elderly care medicine
trainees), the Netherlands.
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