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Content analysis of euthanasia policies of nursing homes in Flanders (Belgium)

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To describe the form and content of ethics policies on euthanasia in Flemish nursing homes and to determine the possible influence of religious affiliation on policy content. Content analysis of euthanasia policy documents. Of the 737 nursing homes we contacted, 612 (83%) completed and returned the questionnaire. Of 92 (15%) nursing homes that reported to have a euthanasia policy, 85 (92%) provided a copy of their policy. Nursing homes applied the euthanasia law with additional palliative procedures and interdisciplinary deliberations. More Catholic nursing homes compared to non-Catholic nursing homes did not permit euthanasia. Policies described several phases of the euthanasia care process as well as involvement of caregivers, patients, and relatives; ethical issues; support for caregivers; reporting; and procedures for handling advance directives. Our study revealed that euthanasia requests from patients are seriously considered in euthanasia policies of nursing homes, with great attention for palliative care and interdisciplinary cooperation.
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SCIENTIFIC CONTRIBUTION
Content analysis of euthanasia policies of nursing homes
in Flanders (Belgium)
Joke Lemiengre ÆBernadette Dierckx de Casterle
´Æ
Yvonne Denier ÆPaul Schotsmans ÆChris Gastmans
Published online: 11 January 2009
ÓSpringer Science+Business Media B.V. 2009
Abstract Objectives To describe the form and content of
ethics policies on euthanasia in Flemish nursing homes and
to determine the possible influence of religious affiliation
on policy content. Methods Content analysis of euthanasia
policy documents. Results Of the 737 nursing homes we
contacted, 612 (83%) completed and returned the ques-
tionnaire. Of 92 (15%) nursing homes that reported to have
a euthanasia policy, 85 (92%) provided a copy of their
policy. Nursing homes applied the euthanasia law with
additional palliative procedures and interdisciplinary
deliberations. More Catholic nursing homes compared to
non-Catholic nursing homes did not permit euthanasia.
Policies described several phases of the euthanasia care
process as well as involvement of caregivers, patients, and
relatives; ethical issues; support for caregivers; reporting;
and procedures for handling advance directives. Conclu-
sion Our study revealed that euthanasia requests from
patients are seriously considered in euthanasia policies of
nursing homes, with great attention for palliative care and
interdisciplinary cooperation.
Keywords Content analysis Ethics Euthanasia
Guideline Nursing homes
In 2002, Belgium became the second country after the
Netherlands with a law on euthanasia. This law allows
euthanasia only under strict conditions and stipulates that it
is to be performed only by physicians (Belgian Ministry of
Justice 2002a). Although the Belgian Act on Euthanasia
mainly addresses the responsibilities of physicians, there is
a growing awareness that health-care institutions also bear
significant responsibility in translating these legal regula-
tions into optimal care for patients requesting euthanasia.
Processes within an organisational culture that may
influence clinical-ethical decision making, such as the
development of written ethics policies, are evoking
increasing interest (Winkler 2005). A written institutional
ethics policy is defined as written agreements (procedures,
guidelines, protocols, etc.) authorized at an institutional
level to guide caregivers when approaching a clinical-
ethical problem that includes a decision-making process
and/or phased plan (Haverkate 1999).
Thus far, nationwide research regarding ethics policies
on euthanasia in nursing homes has been carried out only in
the Netherlands (Haverkate and van der Wal 1996,1998;
Haverkate et al. 2000) and in Flanders (Gastmans et al.
2006; Lemiengre et al. 2007). The prevalence of ethics
policies on euthanasia varies: Around 15% of Flemish
nursing homes (Lemiengre et al. 2008a) and between 62%
and 74% of Dutch nursing homes (Haverkate and van der
Wal 1996; Haverkate et al. 2000) have policies. Nursing
homes with an ethics committee or that were member in an
umbrella organization were more likely to have a written
ethics policy on euthanasia (Lemiengre et al. 2008a).
Nursing homes with a religious affiliation were more likely
to have a more conservative stance regarding euthanasia
(Haverkate and van der Wal 1996,1998; Lemiengre et al.
2008a). Although these self-report survey results from
nursing home administrators have shed light on the
J. Lemiengre (&)Y. Denier P. Schotsmans C. Gastmans
Centre for Biomedical Ethics and Law, Katholieke Universiteit
Leuven, Kapucijnenvoer 35, Box 7001, 3000 Leuven, Belgium
e-mail: Joke.Lemiengre@med.kuleuven.be
B. Dierckx de Casterle
´
Centre for Health Services and Nursing Research, Katholieke
Universiteit Leuven, Leuven, Belgium
123
Med Health Care and Philos (2009) 12:313–322
DOI 10.1007/s11019-008-9176-5
development and communication of written ethics policies
on euthanasia, the questionnaires used in these studies have
gathered only limited information about euthanasia policy
content. Thus far, a content analysis of euthanasia policy
documents has only been carried out on Dutch nursing
homes policies that were developed before the Dutch
euthanasia law (Haverkate et al. 2000). Meanwhile, an
article has been published about a content analysis of
euthanasia policies in Flemish hospitals (Lemiengre et al.
2008b). The current study focuses on euthanasia policies in
Flemish nursing homes. More specific, the aim of the paper
is to describe the form and content of euthanasia policies of
Flemish nursing homes by means of content analysis of
policy documents. A second aim is to describe the possible
influence of religious affiliation on the content of eutha-
nasia policies in Flemish nursing homes. The study was
conducted as part of a wider study on ethics policies on
euthanasia in Flanders (Lemiengre et al. 2007,2008a,b).
Background: nursing homes and euthanasia in Flanders
(Belgium)
The study was carried out in Flanders, the Dutch-speaking
region of Belgium, where 60% (5.9 million) of the nation’s
population lives. The majority of the Flemish population is
Roman Catholic (81%). Catholic nursing homes represent
41% (302/737) of nursing homes in Flanders. Of these
Catholic nursing homes, 77% (232/302) are members of
Caritas Flanders, an umbrella organisation that assembles
Catholic health-care institutions.
According to Article 2 of the Belgian Euthanasia Act,
euthanasia is the intentional termination of life by someone
other than the person concerned, at the latter’s request.
‘Someone other’ is understood to be a physician and ‘ter-
minating life’ is interpreted as the administration of a lethal
dose of medication (Belgian Ministry of Justice 2002a).
According to the act, the physician commits no criminal
offence if he fulfils all conditions outlined by law (Art. 3.1)
and if he respects the due care criteria detailed by this act.
These conditions and procedures differ when euthanasia is
requested by competent terminally ill patients (Art. 3.2),
incompetent terminally ill patients via advance directives
(Art. 4.2), and non-terminally ill patients (Art. 3.3). Com-
petent terminally ill patients are patients in a medically
futile condition resulting from a serious and incurable
disorder caused by illness or accident. The patient’s con-
dition is characterised by constant and unbearable physical
or mental suffering that cannot be alleviated; death is
imminent in these patients. Incompetent terminally ill
patients are unconscious patients suffering from a serious
and incurable disorder caused by illness or accident and
whose condition is irreversible given the current state of
medical science. Non-terminally ill patients are patients in
a medically futile condition resulting from a serious and
incurable disorder caused by illness or accident. The
patient’s condition is characterised by constant and
unbearable physical or mental suffering that cannot be
alleviated; however, death is not imminent in these patients
(Belgian Ministry of Justice 2002a).
In Belgium, 1.2% of all deaths result from euthanasia
(van der Heide et al. 2003). Between January 2004 and
December 2005, 5% of all registered euthanasia cases in
Belgium were performed in nursing homes, 39% were
performed at home and 53% in hospitals (Federal Control
and Evaluation Committee on Euthanasia 2006).
The legalisation of euthanasia in Belgium was an
enormous challenge for Catholic health-care institutions:
How can they preserve their Catholic identity within the
Belgian pluralistic context regarding euthanasia? In
response to this challenge, Caritas Flanders published a
position paper, ‘‘Caring for a dignified end of life’’ (Gast-
mans 2005) and a practice guideline (Gastmans et al.
2004), and disseminated both to affiliated institutions.
Caritas Flanders’ aim was to formulate an ethically well-
founded answer to how Catholic health-care institutions
should ensure a dignified end-of-life. The basis of Caritas
Flanders’ view is the unconditional affirmation of the
dignity of the human person, understood as a relational
being. Furthermore, according to Caritas Flanders, eutha-
nasia can only be considered in cases of competent
terminally ill patients after applying the palliative filter
procedure in addition to the legal due care criteria. In
contrast to the law, Caritas Flanders does not consider
euthanasia in cases of incompetent terminally ill and non-
terminally ill patients (Gastmans 2005).
The purpose of the palliative filter is to obviate ‘less
well-considered’ euthanasia requests by informing patients
about palliative care alternatives and by alleviating their
pain and other burdensome symptoms (Broeckaert and
Janssens 2002; Gastmans 2005). Palliative care has played
an active role in the Belgian euthanasia debate. In Belgium,
a comprehensive legal and organisational palliative care
framework is now set up nationwide. Since 1997, each
Belgian nursing home has been required either to provide a
palliative care function (e.g. the availability of palliative
experts) within the nursing home or to cooperate with an
authorized institution with a palliative function (Belgian
Ministry of Social Affairs, Public Health and Environment
1997). In 2002, a law on palliative care was approved at the
same time as the euthanasia law (Belgian Ministry of
Justice 2002b). The law on palliative care is a distinc-
tiveness of the Belgian system compared with the system in
the Netherlands. The Belgian palliative framework makes
the implementation of the palliative filter more plausible
(Gastmans 2005).
314 J. Lemiengre et al.
123
Flemish nursing homes have a non-medical culture and
organisation that focuses on the caring of residents and on
promoting a good quality of life for its residents. After
admission to a nursing home, each resident keeps his or her
general practioner (GP), who is responsible for his or her
medical treatment. Physicians are not employed by nursing
homes. Nurses supervise and assist residents in their daily
activities and share the responsibility in caring for resi-
dents. Nursing home management comprises mostly nurses
or paramedics with a Master’s degree in care management.
Methods
Data collection
Data were collected from November 15, 2005, to February
28, 2006. We surveyed directors of all Flemish nursing
homes (n=737) about their written ethics policies on
euthanasia (development, communication, and stance on
euthanasia) (Lemiengre et al. 2008a) and asked them to
provide a copy of their policy. The euthanasia policy doc-
uments we received were analysed for the current study.
Content analysis
To perform a systematic content analysis of policy
documents, we developed a structured data-abstraction
instrument to describe and analyse the format and content
of the euthanasia policies (Marshall and Rossman 1990;
Appleton and Cowley 1997). First, all documents were read
completely to familiarise ourselves with the data (Appleton
and Cowley 1997). Second, instrument classification cate-
gories representing the different items and subitems that
characterise policy format and content were derived
inductively through repeated readings of the documents.
The formulation and representation of the classification
categories were discussed regularly at team meetings.
Third, the categories were finalized by considering findings
from other studies (Giacomini et al. 2006; Lemiengre et al.
2007). Finally, using the data-abstraction instrument, two
researchers independently coded the presence or absence of
each category in a random sample of 12 documents. One
researcher had a nursing-scientific background (JL); the
other researcher had a philosophical-ethical one (YD).
Categories with coding difficulties between the two
researchers were simplified and redefined, and the 12
documents were recoded.
The final data-abstraction instrument contained the fol-
lowing main topics: form (format, parts, sources, length);
stance on euthanasia in competent terminally ill, incom-
petent terminally ill, and non-terminally ill patients; steps
in euthanasia care process; involved parties (physicians,
nurses, palliative care experts, patient, relatives) and their
roles; ethical aspects (anthropological foundations, ethical
values and principles, objections of conscience); suggested
support for physicians and nurses; reporting; and proce-
dures for dealing with advance directives.
To increase the objectivity and reliability of the
assessment, two researchers independently coded all doc-
uments using the data-abstraction instrument. In cases in
which the two researchers could not agree on coding the
documents or had difficulties interpreting a nursing home’s
stance on euthanasia, a third researcher (ethicist) (CG) was
enlisted to review these documents. Coding disagreements
were discussed and resolved until consensus was reached
(Weber 1990; Jupp and Norris 1993).
The analyses were descriptive. Chi-Square tests were
used to assess whether differences between Catholic and
non-Catholic nursing homes were statistically significant.
For 2 92 tables and r 9k tables, of which at least 20% of
cells had expected frequencies less than five, we used the
Fisher Exact Test or Chi-Square, respectively, with exact
calculation of Pvalues. P\0.05 was considered as sig-
nificant. All analyses were performed using SPSS, release
12.0.
Results
Sample description
Of the 737 nursing homes we contacted, the directors of
612 completed and returned the questionnaire, resulting in
an 83% response rate. Of 92 nursing homes (15%) that
reported to have a euthanasia policy, 85 (92%) provided a
copy of their policy. The majority of nursing homes pro-
vided high-level care for residents (95%), were private
(74%), and were Catholic (67%). Nineteen percent of
nursing homes were small (\60 beds), and 38% had an
ethics committee (Table 1).
Form of euthanasia policies
The majority of the policies consisted of unbound pages
(62%) or were part of the nursing home quality manual
(28%). The length of policies varied from one to 22 pages,
with the median length being three pages. Of the policies,
84% contained a position paper that founded the nursing
home’s stance on euthanasia; 64% contained a euthanasia
care procedure; and 19% contained a copy or a summary of
the euthanasia law. Less than half of the policies (41%)
referred to specific reference material such as regulations in
laws and guidelines of professional organisations. Pub-
lished scientific papers or published opinion papers were
rarely used as reference material for policies (Table 2).
Euthanasia policies of nursing homes 315
123
Content of euthanasia policies
The euthanasia policies we analysed contained the
following major components: nursing homes’ stance on
euthanasia, euthanasia care process, involvement of
caregivers, involvement of patient and relatives, ethical
aspects, and other issues such as support for caregivers,
reporting, and dealing with advance directives (Table 3).
Nursing homes’ stance on euthanasia
All of 85 policies described the nursing homes’ stance on
euthanasia in competent terminally ill patients. However,
only 73 (86%) and 80 (94%) policies described their stance
in incompetent terminally ill and non-terminally ill patients,
respectively (Table 3). Regarding competent terminally ill
patients, 63 (74%) policies permitted euthanasia only after
legal due care criteria and additional procedures (e.g. con-
sultation palliative expert, consideration of euthanasia
request in specially formed interdisciplinary team, advice
ethics committee); 9 (11%) permitted euthanasia after legal
due care criteria; and 13 (15%) did not permit euthanasia
(Table 4). Compared to Catholic nursing homes, more non-
Catholic nursing homes permitted euthanasia without
requiring procedures in addition to legal due care criteria
(v
2
=21.147, P\0.001). Regarding incompetent termi-
nally ill patients, 40 (55%) policies did not permit
euthanasia; 23 (32%) permitted euthanasia after legal due
care criteria and additional procedures; and 10 (14%) per-
mitted euthanasia after legal due care criteria. Regarding
non-terminally ill patients, 40 (50%) policies did not permit
euthanasia; 31 (39%) permitted euthanasia after legal due
care criteria and additional procedures; and 9 (11%) per-
mitted euthanasia after legal due care criteria. Compared to
non-Catholic nursing homes, more Catholic nursing homes
did not permit euthanasia in incompetent terminally ill
and non-terminally ill patients (v
2
=37.601, P\0.001,
v
2
=36.877, P\0.001, respectively) (Table 4).
All 13 nursing homes (15%) that did not allow eutha-
nasia in competent terminally ill patients prescribed that
palliative care should be offered to residents requesting
euthanasia. Of the 40 nursing homes (47%) that did not
allow euthanasia in incompetent terminally ill patients,34
prescribed that palliative care should be offered to residents
requesting euthanasia, and 15 stated that the decision to
withhold and/or withdraw life-sustaining treatment should
be considered. Of the 40 nursing homes (47%) that did
not allow euthanasia in non-terminally ill patients,31
Table 1 Characteristics of nursing homes with a euthanasia policy
(n=85)
N(%)
Type
Nursing homes for residents requiring high-level care 81 (95.3)
Nursing homes for residents requiring low-level care 4 (4.7)
Ownership
Private 63 (74.1)
Public 22 (25.9)
Size
Small (\60 beds) 16 (18.8)
Medium (61–120 beds) 37 (43.5)
Large ([121 beds) 32 (37.6)
Religious affiliation
Catholic 57 (67.1)
Non-Catholic 28 (32.9)
Availability of ethics committee
Yes 32 (37.6)
No 53 (62.4)
Table 2 Form of euthanasia policies (n=85)
N(%)
Format
Unbound pages 53 (62.4)
Quality manual format 24 (28.2)
Booklet 8 (9.4)
Parts
a
Position paper
b
71 (83.5)
Procedure
a
54 (63.5)
Step-by-step plan 41/54 (75.9)
Flow chart 14/54 (25.9)
Continuous text 4/54 (7.4)
Summary or copy of euthanasia law
c
16 (18.8)
Literature sources
No 50 (58.8)
Yes
a
35 (41.2)
Regulations by law 26/35 (74.3)
Guidelines of professional organisations 29/35 (82.9)
Published scientific papers 5/35 (14.3)
Published opinion papers 3/35 (8.6)
Length of document
Median complete document 3 pages
[Min 1–Max 22]
Median position paper 2 pages
[Min 1–Max 13]
Median procedure for euthanasia care process 3 pages
[Min 1–Max 16]
a
Multiple options were possible
b
Policies of more Catholic nursing homes (56/57 cf. 15/28 for non-
Catholic nursing homes) contained a position paper; v
2
=23.800,
P\0.001
c
Five of 16 policies was composed solely of a summary or a copy of
the euthanasia law; 11 of 16 policies also contained a position paper
or a procedure in addition to a copy or summary of the euthanasia law
316 J. Lemiengre et al.
123
prescribed that palliative care should be offered to residents
requesting euthanasia, 17 stated that the decision to with-
hold and/or withdraw of life-sustaining treatment should be
considered, and six stated that professional psychological
care should be offered.
Euthanasia care process
Figure 1visualizes the several phases of the euthanasia
care process as described in euthanasia policies including a
detailed overview of suggested care interventions and
involved caregivers.
All but one policy (n=84, 99%) described at least one
care intervention on how an employee should respond
when confronted with a euthanasia request such as offering
the resident palliative care; and informing the resident
about the euthanasia law, the procedure, etc. The majority
of policies (n=72, 85%) described aspects of the eutha-
nasia decision-making process. Half of these policies
directed the GP to consult with other parties (e.g. palliative
experts, bedside nurses, senior nurses, consulting GPs, or
nursing home management) in addition to legal procedures.
Fifty-four polices required the formation of an interdisci-
plinary team of which the following tasks were described:
to test the euthanasia request against legal criteria; to
consider palliative and/or other treatment possibilities, to
frame the euthanasia care plan (i.e., practical arrangements
regarding who will administer the euthanatica, who will
attend the procedure, resident’s wishes, date and hour of
euthanasia), to inform one another about the euthanasia
request, to give advice regarding the final decision, and to
clarify stances and allowing parties involved to vent their
emotions. Most involved parties were GPs, bedside nurses,
palliative experts, and nursing home management. A
minority of policies suggested that the resident requesting
euthanasia or his/her relatives should participate in the
interdisciplinary team meetings. The interdisciplinary
teams are to meet once or more than once to discuss the
euthanasia request. The senior nurse, the GP, or the nursing
home administrator coordinates this meeting. Care inter-
ventions in cases of no-euthanasia decision are described
in 32% (n=27) of policies such as informing the resident
about the reasons for the decision, discussing alternatives
(e.g., palliative treatment, admission to palliative unit,
transfer to hospital or home) with the resident, or offering
the resident special social, psychological, or spiritual care.
Care interventions concerning the preparation and/or
performance of euthanasia are described in 39% (n=33)
of policies. Examples of these care interventions are: the
framing of a euthanasia care plan that includes practical
arrangements for euthanasia (e.g., date, hour, place, who
shall administer the euthanatica, who is responsible for
aftercare, etc.), suggestions regarding the administration of
euthanatica (e.g., medication protocol), and offering the
resident special social, psychological, or spiritual care.
Care interventions regarding the aftercare are described in
42% (n=36) of policies, such as aftercare for the resi-
dent’s relatives (e.g., conversation with relatives, or a
special ritual), aftercare for caregivers (e.g., debriefing of
caregivers, with or without external counselor), and
administrative aftercare (e.g., completing and sending
registration forms to the Federal Evaluation and Control
Commission for Euthanasia which is legally required, and
Table 3 Overview of the content of euthanasia policies
Themes Nursing homes
with
euthanasia policy
(n=85), N(%)
Nursing homes’ stance on euthanasia
In competent terminally ill patients 85 (100.0)
In incompetent terminally ill patients 73 (85.9)
In non-terminally ill patients 80 (94.1)
Euthanasia care process
Confrontation with euthanasia request 84 (98.8)
Decision-making process 72 (84.7)
Care process in cases of no-euthanasia
decision
27 (31.8)
Preparation and performance of euthanasia 33 (38.8)
Aftercare 36 (42.4)
Involvement of caregivers
GP 72 (84.7)
Palliative experts 57 (67.1)
Nurse 53 (62.4)
Senior nurse 42 (49.4)
Ethics committee 25 (29.4)
Nursing home management 24 (28.2)
Involvement of patient and relatives
Patient 65 (76.5)
Relatives 41 (48.2)
Ethical aspects
Ethical values and principles 61 (71.8)
a
Anthropological foundations 52 (61.2)
b
Dealing with objections of conscience 43 (50.6)
Other issues
Support for caregivers during euthanasia care
process
61 (71.8)
Reporting 38 (44.7)
Procedure for dealing with advance directives 26 (30.6)
c
a
More Catholic nursing homes described ethical values and princi-
ples than non-Catholic nursing homes (v
2
=32.350, P\0.001)
b
More Catholic nursing homes described anthropological founda-
tions than non-Catholic nursing homes (v
2
=32.350, P\0.001)
c
More non-Catholic nursing homes had a procedure for handling
advance directives than Catholic nursing homes (v
2
=10.388,
P=0.001)
Euthanasia policies of nursing homes 317
123
either reporting to the nursing home administrator or to the
ethics committee).
Involvement of caregivers
Policies frequently described the involvement of GPs
(85%), palliative experts (67%), bedside nurses (62%),
senior nurses (49%), ethics committees (29%), and nursing
home management (28%) in the euthanasia care process
(Table 3). The policies frequently described the involve-
ment of caregivers when confronted with a euthanasia
request and in the euthanasia decision-making process, but
they less often described the involvement of caregivers in
preparing and administering euthanasia, in aftercare, and in
the care process. The policies did not define the role of
involved caregivers in cases of a no-euthanasia decision
(Fig. 1).
The policies described the role of GPs in all phases of
the euthanasia process: to listen to the request; to inform
the resident about the law, euthanasia policy, or palliative
options; to be responsible for euthanasia decision-making,
and to be responsible for the administration of the
euthanatica and for administrative aftercare. The bedside
nurse’s role was to primarily listen to the request, to offer
the patient palliative care, and to participate in euthanasia
decision-making. The policies outlined multiple roles for
palliative experts. Although their primary role was to
provide the resident with palliative care, they also had to
participate in euthanasia decision-making and to provide
support for caregivers during the euthanasia care process
(e.g., providing information on palliative alternatives,
offering psychological support to caregivers during the
process, providing aftercare for caregivers, etc.). The role
of senior nurses was primarily to participate in euthanasia
decision-making. They also served as communication
liaisons between GPs and bedside nurses, between the team
and the resident and relatives, and between the team and
nursing home management. Senior nurses also bore the
responsibility of supporting the team during the euthanasia
care process. The role of the ethics committee was pri-
marily to support the team during the euthanasia care
process, especially by providing information on palliative
alternatives, the act on euthanasia, or hospital policy, or by
providing advice during euthanasia decision-making.
The nursing home management’s role (e.g., general
director or care coordinator) was primarily to participate in
Table 4 Nursing homes’ stance on euthanasia
All nursing
homes
m (%)
Catholic nursing
homes
m (%)
Non-Catholic
nursing homes
m (%)
P
Euthanasia in competent terminally ill patients N=85 n=57 n=28 v
2
=21.147, P\0.001
Not permitted 13 (15.3) 11 (19.3) 2 (7.1)
Permitted after legal due care criteria and additional procedures: 63 (74.1) 46 (80.7) 17 (60.7)
Consultation with palliative expert 58/63 (92.1)
Consideration by specially formed interdisciplinary team 51/63 (81.0)
Advice from ethics committee 17/63 (27.0)
Permitted after legal due care criteria 9 (10.6) 0 (0.0) 9 (32.1)
Euthanasia in incompetent terminally ill patients N=73
a
n=50 n=23 v
2
=37.601, P\0.001
Not permitted 40 (54.8) 38 (76.0) 2 (8.7)
Permitted after legal due care criteria and additional procedures 23 (31.5) 12 (24.0) 11 (47.8)
Consultation with palliative expert 22/23 (95.7)
Consideration by specially formed interdisciplinary team 14/23 (60.9)
Advice from ethics committee 4/23 (17.4)
Permitted after legal due care criteria 10 (13.7) 0 (0.0) 10 (43.5)
Euthanasia in non-terminally ill patients N=80
b
n=53 n=27 v
2
=36.877, P\0.001
Not permitted 40 (50.0) 38 (71.7) 2 (7.4)
Permitted after legal due care criteria and additional procedures: 31 (38.8) 15 (28.3) 16 (59.3)
Consultation with palliative expert 29/31 (93.5)
Consideration by specially formed interdisciplinary team 22/31 (71.0)
Advice from ethics committee 6/31 (19.4)
Permitted after legal due care criteria 9 (11.2) 0 (0.0) 9 (33.3)
a
Twelve nursing homes did not describe their stance on euthanasia in incompetent terminally ill patients
b
Five nursing homes did not describe their stance on euthanasia in non-terminally ill patients
318 J. Lemiengre et al.
123
euthanasia decision-making and to support the team during
the euthanasia care process.
Involvement of patients and relatives
Sixty-five policies (76.5%) outlined the involvement of
residents (Table 3): greatest attention was given to a
rather passive role of residents (e.g., to be informed about
law, procedures, and palliative care which is prescribed in
the euthanasia law, and to receive special social, psy-
chological, or spiritual care). Regarding the rather active
roles of residents, the most frequently described role was
‘to decide who should be informed about the euthanasia
request’ which is prescribed in the euthanasia law.
Euthanasia policies gave less attention to resident partic-
ipation in euthanasia decision-making and in framing the
euthanasia care plan. Forty-one policies (48.2%) outlined
the involvement of relatives (Table 3). Greatest attention
was given to a rather passive role of relatives (e.g., to be
informed about the euthanasia request with the resident’s
consent, to be informed about the law, procedures and
palliative care, and to receive special social, psychologi-
cal, or spiritual care). Less attention was given to an
active role of relatives such as participating in euthanasia
decision-making and in formulating the euthanasia care
plan.
Ethical aspects
Anthropological foundations. Fifty-two policies (61.2%)
explicitly described the anthropological foundations of the
euthanasia policy (Table 3), such as Christian/personalistic
anthropology and holistic anthropology. More Catholic
nursing homes described these foundations than non-
Catholic nursing homes (v
2
=32.990, P\0.001).
Ethical values and principles. Sixty-one policies
(71.8%) explicitly described ethical values and principles
(Table 3). Frequently listed were respect for patient
autonomy (e.g., respect for a patient’s freedom of choice,
relational autonomy, informed choice); respect for a
patient’s quality of life; and respect for human dignity and
dignified death. More Catholic nursing homes described
Confrontation
Care interventions (84, 98.8%):
Listening to request (77)
Offering the resident palliative care (72)
Informing the resident about the law, euthanasia policy, or palliative options
(65)
Involved caregivers (46, 54.1%):
GP (42), bedside nurse (40), palliative expert (39)
Decision-making process
Procedure (72, 84.7%):
Consultation of other partners in
addition to legal procedures (38)
Consideration of request by specially
formed interdisciplinary team in
addition to legal procedures (54)
Legal procedures (9)
Involved caregivers (72, 84.9%):
GP (72), palliative expert (54), bedside
nurse (53), senior nurse (39), nursing
home administrator (24)
Decision = euthanasia Decision = no euthanasia
Care interventions (33, 38.8%):
Framing of euthanasia care plan (23)
Administration of euthanatica (31)
Offering the resident special psychological, social, or
spiritual care (15)
Involved caregivers (31, 36.5%):
GP (31), bedside nurse (16), palliative expert (2)
Care interventions (27, 31.8%):
Informing the resident about decision
(25)
Discussing alternatives (palliative care,
transfer, etc.,) with the resident (24)
Offering the resident special
psychological, social, or spiritual care
Aftercare
(22)
Involved caregivers: Not defined in policies
Care interventions (36, 42.4%):
Administrative aftercare (31)
Aftercare for caregivers (28)
Aftercare for relatives (22)
Aftercare for deceased resident (4)
Involved caregivers (28, 32.9%):
GP (28), bedside nurse (4), palliative expert (1) *(N, %)
Fig. 1 Euthanasia care process described in the euthanasia policies of 85 nursing homes
Euthanasia policies of nursing homes 319
123
ethical values and principles than non-Catholic nursing
homes (v
2
=32.350, P\0.001).
More specific, Catholic nursing homes share the Chris-
tian/personalistic anthropology with specific ethical values,
such as relational autonomy. The holistic anthropology was
shared by both Catholic and non-Catholic nursing homes;
also ethical values such as informed choice, respect for a
patient’s quality of life, human dignity and dignified
death were expressed regardless the institutional religious
affiliation.
Dealing with objections of conscience—physicians and
nurses. Forty-three policies (50.6%) explicitly mentioned a
caregiver’s right to have objections based on conscience
(Table 3). Nineteen policies contained procedures on how
to handle objections from physicians. These procedures
directed physicians to inform the patient about their
objections and to refer the patient to a colleague GP.
Twenty-three policies contained procedures on how to
handle objections from nurses. These procedures outlined
how nurses could withdraw from participating in the
euthanasia decision-making process or from assisting a
physician in performing the euthanasia.
Other issues
Support for caregivers during the euthanasia care process.
Sixty-one policies (71.8%) described support available for
caregivers during the euthanasia care process (Table 3):
information on palliative alternatives, the act on euthana-
sia, or hospital policy (n=47); advice during the
euthanasia decision-making process (n=58); and provi-
sions for the psychological and/or spiritual support of
caregivers (n=29).
Reporting. Thirty-eight policies (44.7%) contained
instructions on what specific medical and/or nursing
records need to be maintained (Table 3) with major
attention to the completion of legally required documents,
and to a lesser extent attention to report derived from
conversations with patient and/or relatives, the euthanasia
care plan, report derived from the interdisciplinary team
meeting, and advice from the palliative support team or
ethics committee.
Procedure for handling advance directives. Twenty-six
policies (30.6%) included a procedure for handling
advance directives. Nursing homes with no religious affil-
iation were more likely to have such a procedure than
Catholic nursing homes (v
2
=10.388, P=0.001).
Discussion
Our study had a response rate of 83%. Of the nursing
homes that have a written euthanasia policy, 92% sent us a
copy of their policy. This high response rate indicates that
our findings are most likely representative of Flemish
nursing homes that have a euthanasia policy. However,
because there was a low prevalence (15%) of euthanasia
policies in Flemish nursing homes, our findings cannot be
generalized to all Flemish nursing homes.
Euthanasia remains a controversial issue. Even in a
country where it is legalized, there are a host of issues to be
dealt with in practice. Our analysis provides a window into
the practical issues and challenges associated with opera-
tionalising an act on euthanasia, using written euthanasia
policies in nursing homes in Flanders (Belgium) as an
example. These issues involve the consideration of a stance
on euthanasia of a nursing home on the one hand, but also
the practical organization of the care for patients requesting
euthanasia.
Regarding nursing homes’ stance on euthanasia, our
content analysis revealed that euthanasia policies seriously
consider the euthanasia requests of residents. Only 15% of
all the policies we analysed and 20% of the policies of
Catholic nursing homes prohibited euthanasia for all
patient categories. Nursing homes that prohibited eutha-
nasia offered these patients palliative care or considered to
withhold and/or withdraw life-sustaining treatment. How-
ever, less clear were the possible referral procedures of
patients requesting euthanasia in nursing homes with a
prohibition policy. An obvious influence of Caritas Flan-
ders on Catholic nursing homes’ stance on euthanasia was
observed: In cases of competent terminally ill patients,
three third of analysed policies of nursing homes regarded
the mere application of the due care criteria as insufficient
to justify euthanasia and opted for additional procedures
such as the consultation of a palliative expert and
consideration of the request by a specially formed inter-
disciplinary team. Moreover, great resistance to carrying
out euthanasia in incompetent residents and non-terminally
ill residents, especially in Catholic nursing homes is found
which is also consistent with the Caritas Flanders’ stance
on euthanasia (Gastmans 2005). The restrictive policy
towards euthanasia in Catholic nursing homes is more
obvious in comparison with Flemish Catholic hospitals
(Lemiengre et al. 2008b).
Regarding the practical organisation of the care for
patients requesting euthanasia, great attention was given to
palliative care and interdisciplinary cooperation. The Bel-
gian law on euthanasia already prescribes that the treating
physician should discuss palliative care alternatives with
the patient as due care criterion (Belgian Ministry of Jus-
tice 2002a). However, the implementation of the palliative
filter in the majority of analysed euthanasia policies of
nursing homes may be an explicit way of giving priority to
palliative care in case of euthanasia requests. The height-
ened attention given to palliative care in response to
320 J. Lemiengre et al.
123
euthanasia requests, especially in Catholic nursing homes,
supports the premise that palliative care can be part of
euthanasia policies. On the other hand, the absence of a
palliative filter procedure does not necessarily imply an
absence of palliative care in the other nursing homes.
In addition to palliative care, Flemish nursing homes
emphasised interdisciplinary cooperation. In contrast to the
law, which primarily focuses on the role of the physician,
the ethics policies we analysed extended their suggestions
to palliative experts, bedside and senior nurses, and nursing
home management. Interdisciplinary cooperation was most
obvious in euthanasia decision-making processes. Inter-
disciplinary consideration of the euthanasia request was
more frequently described in the euthanasia policies of
Flemish nursing homes (64%) than in those of Dutch
nursing homes (35%) (Haverkate et al. 2000).
Research has demonstrated that involving nurses in the
euthanasia decision-making process and communicating
with them during this process is necessary, since they are
the patient’s closest (Inghelbrecht et al. 2008; De Bal et al.
2008). The input of palliative experts is also important,
because they are knowledgeable of palliative care alter-
natives. Furthermore, sharing the burden in decision-
making about ethically controversial issues, such as
euthanasia, can serve as support for treating physicians
(Georges et al. 2008). The active involvement of the
nursing home management in the euthanasia decision-
making process was rather unexpected. Earlier research
showed that nursing home management played a passive
role during decision-making (e.g., being informed about
the euthanasia request, participating in euthanasia policy
development) (Haverkate et al. 2000; Gastmans et al.
2006). Further research should explore what kind of
involvement is favourable for nursing home management
in cases of euthanasia.
Sixty-four percent of the analysed euthanasia policies
contained concrete procedures that integrated various care
interventions into the different phases of the euthanasia
care process. Care associated with the ‘confrontation with
euthanasia request’ and ‘euthanasia decision-making’
phases was more frequently described than care associated
with the other phases (planning and performance of
euthanasia, care in cases of no-euthanasia decision, and
aftercare). This can probably be explained by the fact that
the majority of nursing homes had no concrete experience
with actual euthanasia cases (Federal Control and Evalua-
tion Committee on Euthanasia 2006) or by the fact that the
majority of nursing homes had a restrictive stance on
euthanasia (e.g., complete prohibition of euthanasia, or
euthanasia after due care criteria and additional criteria).
The great attention the policies gave to caregiver support
during the euthanasia care process is conspicuous. This
support mainly focused on providing opportunities for
caregivers to consult other experts for information or
advice. Less attention, however, was given to providing
caregivers with psychological and spiritual support during
the entire process. This observation is consistent with
findings from the content analysis of euthanasia policies in
Flemish hospitals (Lemiengre et al. 2008b). Nevertheless,
physicians and nurses have emphasised the need of
receiving this kind of support, since dealing with euthanasia
requests is distressing (Stevens 2006; De Bal et al. 2008;
Georges et al. 2008). Also notable among our findings was
the lack of attention policies gave to strategies for dealing
with conflicts and tensions associated with the euthanasia
decision-making process. For instance, what should be done
when the GP, who according to the law bears responsibility
for performing euthanasia, does not agree with the eutha-
nasia policy of the nursing home? Earlier research similarly
found that policies failed to adequately provide strategies
for dealing with conflicts between caregivers and institu-
tional policies (Lemiengre et al. 2007,2008b). In addition,
we found that euthanasia policies should also give more
attention to strategies for addressing the objections of
conscience of physicians and nurses.
Future research
Our study revealed that the development of euthanasia
policies in Flemish nursing homes is at a very early stage.
Indeed, only 15% of Flemish nursing homes have devel-
oped a euthanasia policy. Consequently, there is no
information about how euthanasia requests are dealt with in
the other 85% of Flemish nursing homes. However, an
increase of euthanasia policies in Flemish nursing homes
can be expected. Indeed, half of the nursing homes without
a euthanasia policy reported that they were in the process
of drafting a policy or had plans to do so (Lemiengre et al.
2008a).
Furthermore, some euthanasia policies add norms to
legal criteria and draw great attention to care aspects, while
others do not. Differences in form and content of eutha-
nasia policies may have an important impact on clinical
practice. However, until now, it is not clear what kind of
aspects of euthanasia policies are important for qualitative
end-of-life decision making. Future research should
explore whether and in which way ethics policies on
euthanasia facilitate clinical-ethical decision-making on
euthanasia.
Additional research is also needed on how these policies
affect the quality of care for patients requesting euthanasia.
Acknowledgements The authors gratefully thank the nursing home
for participating in this study. This study was made possible by a
grant from the Fonds voor Wetenschappelijk Onderzoek Vlaanderen.
Euthanasia policies of nursing homes 321
123
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Samenvatting Sinds de invoering van de Wet toetsing Levensbeëindiging op verzoek en hulp bij zelfdoding (Wtl) steeg van 2003-2017 in Nederland het jaarlijks aantal euthanasiegevallen. In 2018 was er na deze jarenlange stijging een afvlakking te zien in het aantal gevallen. Het is niet bekend wat de achterliggende redenen voor deze ontwikkelingen zijn. Daarom heeft het Nivel, in opdracht van het ministerie van Volksgezondheid, Welzijn en Sport (VWS), de beschikbare wetenschappelijke gegevens en andere bronnen van informatie over ontwikkelingen rondom euthanasie in kaart gebracht. Het stijgend aantal euthanasieverzoeken en de uitvoering daarvan zou als eerste te maken kunnen hebben met veranderingen in de Nederlandse bevolking. Er zijn de laatste 15 jaar meer ouderen bijgekomen en dat is de groep die relatief vaak een euthanasieverzoek indient. Maar alleen de stijging in het aantal ouderen kan de stijging in het aantal euthanasieverzoeken en de uitvoering daarvan niet verklaren. Ouderen doen namelijk ook relatief vaker een euthanasieverzoek en hun verzoeken worden vaker uitgevoerd dan voorheen. Een andere factor die mogelijk een rol speelt is dat in de afgelopen 15 jaar het aantal mensen dat aan kanker sterft gestegen is met 10% en het aantal mensen dat aan hart- en vaatziekten sterft gedaald is met 15%, vooral bij mensen boven 65 jaar. Kanker is relatief vaak een reden voor een euthanasieverzoek (twee derde van de euthanasieverzoeken is gerelateerd aan kanker) en deze verzoeken worden ook relatief vaak uitgevoerd (59%) terwijl hart- en vaatziekten nauwelijks een reden voor een euthanasieverzoek zijn (5% van de euthanasieverzoeken) en deze verzoeken ook weinig ten uitvoer worden gebracht (32%).Dat er meer mensen sterven aan kanker zou dus een verklaring kunnen zijn voor (een deel van) de stijging in het aantal euthanasieverzoeken en de uitvoer daarvan. Ook is er meer draagvlak voor euthanasie gekomen binnen de Nederlandse bevolking en lijkt de behoefte aan eigen regie over het levenseinde toegenomen. Het percentage mensen dat tegen euthanasie is daalde van 12% in 2002 naar 5% in 2011 en eveneens 5% in 2016. Vooral ouderen van 65-80 jaar kunnen zich ook vaker voorstellen dat zij zelf een euthanasieverzoek zouden doen (58% in 2001, 70% in 2008). Het draagvlak is vooral groot voor euthanasie bij mensen met ernstige lichamelijke ziekten. Voor euthanasie bij psychische problemen, voltooid leven of dementie is veel minder draagvlak, hoewel dit stijgt. Als laatste zou de toegenomen betrokkenheid van huisartsen bij de stervensfase en de toegenomen kennis, leeftijd en ervaring van huisartsen een lichte stijging in de euthanasieverzoeken en uitvoering van euthanasie kunnen verklaren. De kennis van artsen over euthanasie is goed. Voor patiënten van gewetensbezwaarde artsen en bij complexe euthanasievraagstukken bieden de Levenseindekliniek en/of samenwerkingsafspraken tussen groepen artsen een bruikbaar alternatief, waardoor barrières weggenomen zijn. Dit verklaart mogelijk een deel van de stijging in het percentage uitgevoerde euthanasieverzoeken. Bij de afvlakking van het aantal euthanasieverzoeken dat in 2018 werd uitgevoerd hebben de langdurige griepepidemie van 2018 en recente strafrechtelijke onderzoeken door het Openbaar Ministerie naar enkele als ‘onzorgvuldig’ beoordeelde meldingen van euthanasie mogelijk een rol gespeeld. Het is echter ook mogelijk dat het een toevallige fluctuatie of stabilisatie is. Hier kan pas meer over gezegd worden als ook gegevens over het jaar 2019 bekend zijn. Nivel Ontwikkelingen in het aantal euthanasiegevallen en achterliggende factoren 7 Er is nog een aantal andere factoren die mogelijk een rol kunnen spelen bij verzoeken tot euthanasie, zoals een toename in opleidingsniveau, de ontwikkelingen in het geven van voorlichting over euthanasie of een mogelijk veranderd euthanasiebeleid in zorginstellingen. De invloed van deze factoren is onbekend. Het is goed voor te stellen dat artsen de afgelopen 15 jaar vaker informatie over euthanasie zijn gaan geven, want er is door de jaren meer aandacht voor zorg rondom het levenseinde, maar recent onderzoek hierover ontbreekt. Verder is het onbekend hoe het euthanasiebeleid van zorginstellingen zich sinds 2005 ontwikkeld heeft en wat de invloed is van fusies van christelijke met openbare instellingen. Verder onderzoek zou zich op deze kennislacunes kunnen richten. Vooral ontwikkelingen in zorgbeleid en verder onderzoek naar de ontwikkeling van het aantal euthanasiegevallen de komende jaren ligt hierbij voor de hand. Ontwikkelingen in het zorgbeleid zijn retrospectief na te gaan door dossieronderzoek of door middel van vragenlijsten bij huisartspraktijken, ziekenhuizen, verzorgingshuizen en hospices. Ook lijkt het interessant om artsen te vragen naar de invloed die het beleid op hun handelen heeft. Mocht de afvlakking in het aantal euthanasiegevallen in 2019 doorzetten dan lijken vragenlijsten onder huisartsen en specialisten een goede methode om hier verder onderzoek naar te doen. Aan hen kan onder meer gevraagd worden naar de invloed van de onderzoeken van het OM en tuchtzaken betreffende euthanasie. Wat betreft de communicatie en voorlichting van artsen over euthanasie is, in tegenstelling tot de voorbeelden in de vorige alinea’s, retrospectief onderzoek lastiger. Het is de vraag in hoeverre artsen en patiënten zich betrouwbaar kunnen herinneren hoe de communicatie jaren geleden verliep. Onderzoek naar de huidige communicatie en voorlichting is natuurlijk wel mogelijk. Concluderend is er niet één belangrijke factor, maar heeft een samenspel van factoren een rol gespeeld in de stijging van het aantal euthanasieverzoeken en het percentage dat uitgevoerd wordt.
... Such reporting can lead to the trivialisation of an otherwise serious topic. The extent of trivialisation of the debate over euthanasia, to the point of ridicule over the decision is evident in the quotations of patients making the decision to end their lives [8,9]. For example, the individual in Belgium whose life was ended after obtaining a sex change was quoted as saying: 'My new breasts did not match my expectations and my new penis had symptoms of rejection. ...
... CA is able to transform qualitative contents into systematic quantitative data (Joubish and Khurram, 2011), assign codes to indicate the presence of meaningful patterns, and assist us to reveal essence and deep reasons from phenomena (Graneheim and Lundman, 2004). CA was widely applied into a variety of scopes, such as analysis report (Milne and Adler, 1999), policy decision (Farchi and Salge, 2017), and document management (Lemiengre et al., 2009). In the field of sustainable development, sustainable manufacturing (Moldavska and Welo, 2017) and sustainable business activities and practice (Ritala et al., 2018) were derived by CA, obtaining many valuable findings from the raw materials or primary information. ...
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Background: Multiple sources of regulation seek to shape euthanasia practice in Belgium, including legislation and training. This study comprehensively mapped which of these sources govern which domains of euthanasia practice, such health professionals' obligations, or managing patient requests. Method: Scoping review methodology was used to search for scholarly records which discussed Belgian euthanasia regulation. Template analysis was used to generate themes describing the domains of euthanasia practice governed by sources of regulation. Results: Of 1364 records screened, 107 records were included. Multiple sources of regulation govern each domain, which are: the permissible scope of euthanasia; the legal status of a euthanasia death; the euthanasia process; the rights, obligations, and roles of those involved; system workings; and support for health professionals who provide euthanasia. Conclusions: Domains with significant yet fragmented regulation may lead to inconsistent care provision. Policymakers should develop coherent guidance to support health professionals to navigate this regulatory landscape.
Thesis
Some people approaching death experience devastating symptoms that cannot be alleviated despite intense medical and palliative treatment. This leaves health care professionals, patients and relatives with a last-resort treatment, continuous sedation until death, which entails the use of sedative drugs to induce a state of consciousness until death in order to take away a person’s experience of suffering. Though increasingly prevalent and widespread internationally, controversial issues still persist about almost every aspect of the practice, for example, it is sometimes performed suboptimally, some of the indications such as intolerable suffering and life expectancy are difficult to assess and patients and relatives are not always involved in the medical decision-making and are often ill-informed about what to expect, leading to a perceived poor quality of dying and issues with coping. Moreover, challenges with the practice are particularly pervasive in nursing homes as various specific individual and institutional factors may further complicate good practice. Towards the improvement of continuous sedation until death in nursing homes was written as a Joint PhD dissertation and describes the practice of continuous sedation until death in Flanders, Belgium over time, with particular attention to the role of patients in the decision-making preceding. An important part of this dissertation was focused on the development of a practice protocol adapted to the specific context of nursing homes aiming to contribute to improving continuous sedation until death in Flemish nursing homes.
Article
Background: Since Belgium legalised euthanasia, the number of performed euthanasia cases for psychological suffering in psychiatric patients has significantly increased, as well as the number of media reports on controversial cases. This has prompted several healthcare organisations and committees to develop policies on the management of these requests. Method: Five recent initiatives that offer guidance on euthanasia requests by psychiatric patients in Flanders were analysed: the protocol of Ghent University Hospital and advisory texts of the Flemish Federation of Psychiatry, the Brothers of Charity, the Belgian Advisory Committee on Bioethics, and Zorgnet-Icuro. These were examined via critical point-by-point reflection, focusing on all legal due care criteria in order to identify: 1) proposed measures to operationalise the evaluation of the legal criteria; 2) suggestions of additional safeguards going beyond these criteria; and 3) remaining fields of tension. Results: The initiatives are well in keeping with the legal requirements but are often more stringent. Additional safeguards that are formulated include the need for at least two positive advices from at least two psychiatrists; an a priori evaluation system; and a two-track approach, focusing simultaneously on the assessment of the patient's euthanasia request and on that person's continuing treatment. Although the initiatives are similar in intent, some differences in approach were found, reflecting different ethical stances towards euthanasia and an emphasis on practical clinical assessment versus broad ethical reflection. Conclusions: All initiatives offer useful guidance for the management of euthanasia requests by psychiatric patients. By providing information on, and proper operationalisations of, the legal due care criteria, these initiatives are important instruments to prevent potential abuses. Apart from the additional safeguards suggested, the importance of a decision-making policy that includes many actors (e.g. the patient's relatives and other care providers) and of good aftercare for the bereaved are rightly stressed. Shortcomings of the initiatives relate to the aftercare of patients whose euthanasia request is rejected, and to uncertainty regarding the way in which attending physicians should manage negative or conflicting advices, or patients' suicide threats in case of refusal. Given the scarcity of data on how thoroughly and uniformly requests are handled in practice, it is unclear to what extent the recommendations made in these guidelines are currently being implemented.
Article
Objective. —To describe the prevalence and some features of policies on medical decisions concerning the end of life (MDELs) in Dutch hospitals, nursing homes, and institutions for the mentally disabled.Design. —A cross-sectional descriptive postal survey of 558 Dutch health care institutions.Setting. —All Dutch hospitals, nursing homes, and general institutions for the mentally disabled.Participants. —Directors of patient care of the institutions.Main Outcome Measures. —Respondents' reports on the existence of policies and guidelines on the following MDELs: euthanasia/assisted suicide (EAS), life-terminating acts without explicit request of the patient, refusal of treatment by patient, withholding or withdrawing treatment, symptom and pain control, and do-not-resuscitate (DNR) decisions.Results. —Of 558 health care institution managers, 86% responded. Most of the hospitals (69.2%) and nursing homes (73.9%) but only 16.3% of the institutions for the disabled had a written EAS policy. Nursing homes with a ban on EAS often had religious affiliations. In 37% of nursing homes, 15% of hospitals, and 15% of institutions for the disabled, the management had written policies on terminating life without request. Sixty percent of the hospitals, 35% of the nursing homes, and 17% of the institutions for the disabled had guidelines for one or more of four other distinct MDELs. Forty-five percent, 20%, and 8% of hospitals, nursing homes, and institutions of mentally disabled, respectively, had guidelines on DNR decisions. The management of 89% of the hospitals and 94% of the nursing homes communicated their policies on EAS to physicians and nurses in their institutions without being asked. Far fewer of these hospitals (3.9%) and nursing homes (30.5%) made their policies on EAS known to patients without being asked.Conclusions. —This study indicates that an important step toward policy development on EAS has been made by Dutch hospitals and nursing homes. Particularly with respect to policies on such decisions as withholding or withdrawing treatment, symptom and pain control, and DNR orders, an unexplored field is open to management for policy development in the Netherlands.(JAMA. 1996;275:435-439)
Article
To describe the prevalence and some features of policies on medical decisions concerning the end of life (MDELs) in Dutch hospitals, nursing homes, and institutions for the mentally disabled. A cross-sectional descriptive postal survey of 558 Dutch health care institutions. All Dutch hospitals, nursing homes, and general institutions for the mentally disabled. Directors of patients care of the institutions. Respondents' reports on the existence of policies and guidelines on the following MDELs: euthanasia/assisted suicide (EAS), life-terminating acts without explicit request of the patient, refusal of treatment by patient, withholding or withdrawing treatment, symptom and pain control, and do-not-resuscitate (DNR) decisions. Of 558 health care institution managers, 86% responded. Most of the hospitals (69.2%) and nursing homes (73.9%) but only 16.3% of the institutions for the disabled had a written EAS policy. Nursing homes with a ban on EAS often had religious affiliations. In 37% of nursing homes, 15% of hospitals, and 15% of institutions for the disabled, the management had written policies on terminating life without request. Sixty percent of the hospitals, 35% of the nursing homes, and 17% of the institutions for the disabled had guidelines for one or more of four other distinct MDELs. Forty-five percent, 20%, and 8% of hospitals, nursing homes, and institutions of mentally disabled, respectively, had guidelines on DNR decisions. The management of 89% of the hospitals and 94% of the nursing homes communicated their policies on EAS to physicians and nurses in their institutions without being asked. Far fewer of these hospitals (3.9%) and nursing homes (30.5%) made their policies on EAS known to patients without being asked. This study indicates that an important step toward policy development on EAS has been made by Dutch hospitals and nursing homes. Particularly with respect to policies on such decisions as withholding or withdrawing treatment, symptom and pain control, and DNR orders, an unexplored field is open to management for policy development in the Netherlands.
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