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Original Study
Attitudes Toward Death, Dying, End-of-Life Palliative Care,
and Interdisciplinary Practice in Long Term Care Workers
Bernard-Simon Leclerc PhD
a
,
b
,
c
,
*, Sabrina Lessard MSHA
a
, Coralie Bechennec MSHA
d
,
Emma Le Gal MSHA
d
, Sylvie Benoit DEC
e
, Lyne Bellerose DEP
e
a
Centre de recherche, Centre de santé et de services sociaux de Bordeaux-Cartierville-Saint-Laurent, centre affilié universitaire, Montréal, Québec,
Canada
b
Centre de recherche, Institut universitaire de gériatrie de Montréal, Montréal, Canada
c
Département de médecine sociale et préventive, École de santé publique de l’Université de Montréal, Montréal, Québec, Canada
d
Département de politiques sociales et de santé publique, Université de Bretagne-Sud, Lorient, France
e
Centre d’hébergement Saint-Joseph-de-la-Providence, Centre de santé et de services sociaux de Bordeaux-CartiervilleeSaint-Laurent, centre affilié
universitaire, Montréal, Québec, Canada
Keywords:
Attitude of health personnel
attitude to death
long term care
nursing homes
palliative care
patient care team
abstract
Background: Besides personal and professional experiences, long term care providers’own attitudes
toward death may affect the care given to dying residents.
Objectives: To assess beliefs, values, and attitudes toward death, dying, palliative, and interdisciplinary
care in long term care workers and identify any differences between different job categories and places of
work.
Design: Descriptive cross-sectional survey study.
Setting: Five public long term care facilities.
Participants: One thousand one hundred seventy volunteers, clinical managers, and all categories of
residential long term care workers.
Measurements and Methods: An anonymous paper or electronic self-administered survey questionnaire
consisting of 24 items, answered on a 4-point bipolar Likert scale. Between-group differences were
compared with the analysis of variance test after adjustment for the multiple post-hoc comparisons.
Results: Healthcare workers had a relatively positive attitude toward more than one-half of the selected
aspects of interdisciplinary practice and end-of-life palliative care for long-term residents. However,
attitudes were more mixed about 10 other aspects and a higher percentage of respondents indicated
negative attitudes toward them. Overall, there are significant differences between upper-level pro-
fessionals and managers (registered nurses, physicians, rehabilitation staff, and clinical managers) vs the
hands-on caregivers (nursing assistants, patient assistants, and volunteers) with regard to some aspects
of the care of the dying.
Conclusions: The results suggest that healthcare workers’attitudes need to be taken into account in long
term care facilities. Patient assistants, volunteers, and nursing assistants seem most likely to above all
benefit from training and support programs.
Ó2014 - American Medical Directors Association, Inc. All rights reserved.
In Quebec, as elsewhere in the world, demographic aging and
societal changes that lead to decreased co-residence of elderly with
their families will increase demand on long term care (LTC) facilities.
1
Nursing homes and LTC facilities often represent the last place people
will live before they die.
2,3
About one-third of residents die each year
in these settings.
4,5
Many guidelines and policies from developed countries recom-
mend the implementation of end-of-life palliative care to provide
quality of life for patients and families, achieved through an inter-
disciplinary approach.
6e9
Work-related continuing education and
training opportunities are also recommended to everyone involved in
The authors declare no conflicts of interest.
This study was funded by the Centre de recherche et de partage des savoirs
InterActions of the CSSS de Bordeaux-CartiervilleeSaint-Laurent, affiliated to the
Université de Montréal.
The findings have been partly reported at the Canadian Hospice Palliative Care
Conference 2013, which took place from October 31 to November 3, 2013 in Ottawa,
Ontario.
* Address correspondence to Bernard-Simon Leclerc, PhD, Centre de recherche,
Centre de santé et de services sociaux de Bordeaux-CartiervilleeSaint-Laurent,
centre affilié universitaire, 11822, Avenue du Bois-de-Boulogne, Montréal, Québec
H3M 2X6, Canada.
E-mail address: bernardsimon.leclerc.bcstl@ssss.gouv.qc.ca (B.-S. Leclerc).
JAMDA
journal homepage: www.jamda.com
1525-8610/$ - see front matter Ó2014 - American Medical Directors Association, Inc. All rights reserved.
http://dx.doi.org/10.1016/j.jamda.2013.11.017
JAMDA 15 (2014) 207e213
health and social care.
10,11
Palliative care is not restricted to special
places. Ideally, this care should be available to people where appro-
priate, which may range from the person’s home to specialized
hospices.
8,12
Nursing homes and LTC residents have multiple, chronic
conditions, such as dementia or Alzheimer’s. These individuals should
also benefit from palliative care.
3,13e15
Unfortunately, the approaches to end-of-life palliative care are
generally absent or poorly developed in these settings,
2,4
the services
being given by the usual care teams having received no special
training. Endeavours to design, test, and implement such a palliative
care or training program to the particular needs of LTC residents
and their families are still in their early stages. Since 2008, the Uni-
versity Institute of Geriatrics of Montreal has established an inter-
professional training program on end-of-life palliative care in LTC
facilities, to train those who will in turn teach others in their own
institution.
16
Effective end-of-life palliative care requires long term care staff to
readjust their focus and acquire skills and knowledge beyond those
attainable through books or school instruction alone.
17
Palliative care
practice and education is not just a matter of knowledge but also
attitudes. It is acknowledged that attitudes of healthcare workers
toward death and dying patients may influence the quality of care
they provide them and the relationships they establish with their
families.
18e25
As the literature suggests, implementing an educational
program tailored to workers’needs may be useful in helping to foster
more positive attitudes toward end-of-life care.
23
Of the previous studies exploring attitudes toward death, dying,
and end-of-life palliative care, most have focused on nurses and
primarily examined homecare, hospice, medical-surgical, pediatric,
and cancer settings. There is a gap in research regarding other
workers, specifically in LTC settings. We need this information to
support training and skills development programs to bring about
a change in the workplace culture and people’s attitudes. We,
thus, conducted a baseline assessment and comparison of attitudes
among LTC providers from different job categories and places of work.
Long Term Care Facilities in Quebec
Residential and facility-based LTC in Canada are governed by the
provinces, which vary across the country in terms of terminology,
range of services offered and cost coverage. On a continuum of
graduate services, the residential and long term care centers, as they
are called in Quebec, correspond to the resources offered to people
with the highest degree of loss of autonomy. The LTC centers divide
themselves into three types: public, subsidized (non-profit private
institution under agreement) and private. Public and subsidizeddiffer
only in their ownership; all other aspects of funding, admission
criteria, and cost to the individuals are regulated by the Quebec
Ministry of Health and Social Services. Private facilities are residential
properties independent from government ownership and funding;
they have their own admission criteria.
The public LTC centers are specialized institutions that provide
more than 3 hours of care per day to adults (mainly seniors) who, by
reason of major loss of functional or psychosocial autonomy, can no
longer live in their own home despite the support of their families
and friends. Overall, they provide living accommodation for people
who require on-site delivery of 24 hour, 7 days a week supervised
care, including professional health services, personal care and ser-
vices such as meals, laundry and housekeeping. A recent report about
the residents and public LTC centers
26
indicates that 41% of the
clientele was 85 years old and older and 80% had cognitive losses.
People admitted (and selected) during the last years showed a severe
loss of autonomy and had important needs for nursing, medical ser-
vices and professional services. The average length of stay is three
and a half years, so that more residents are often at the end of life. The
vast majority of the staff of the public LTC centers is dedicated to the
care of residents. Almost two thirds (63%) of staff members act as
patient assistants and 35% have responsibilities of nursing. A financial
contribution is required on the part of the adult residents who are
accommodated in Québec LTC facilities to cover costs of the bed and
board. The average contribution amounts to a little more than Ca-
nadian $1200 per month, or approximately $14,600 per year. A place
in the center costs on average Canadian $93,256 per year to the
Quebec government health system.
26
In the vast majority of cases, LTC centers in Quebec have no
palliative care program, no specialized palliative care teams and don’t
set aside palliative care beds.
8
There’s no special code that allows
identifying a permanent facility resident at the end of his/her life.
Terminal residents receive care in their usual unit and by the usual
untrained institutions’healthcare workers.
8
Methods
Studied Setting
We only approached five LTC facilities of a given multi-ethnic
district of Montreal and all five institutions agreed to participate.
The studied facilities are public, secular, non-profit institutions. They
are parts of a same local territorial community-governed health or-
ganization that includes two local community health centers that
provide primary health care, health promotion and community
development services, which as a whole forms a single university
affiliated organization. In total, the five facilities have a capacity of
987 beds, distributed as follows: 398, 140, 147, 282, and 20 beds,
respectively. The smallest center hosts people with Alzheimer’s type
dementia. The largest center includes a specialized 10-bed palliative
unit whose workers were specifically excluded from the survey.
A total of 629 of the 1170 participants completed and returned the
questionnaires (54%), from which 580 of the 1050 (55%) paper
questionnaires were returned and 49 of the 120 (41%) respondents
contacted electronically completed the online questionnaire. A simple
random sample size of ours (n ¼629) would give estimates with a
maximal margin of error of 4% with a 95% confidence interval.
General Procedure of Administration
We conducted a cross-sectional descriptive survey among all
healthcare workers and volunteers who have direct contact with the
disabled and chronically ill adult residents from the LTC facilities.
Nursing assistants, registered nurses, dieticians, occupational thera-
pists, physiotherapists, psychologists, social workers, spiritual ad-
visers, patient assistants, volunteers, and managers (including clinical
officers and heads of unit) were invited by the director of each LTC
facility to complete a voluntary and anonymous self-administered
questionnaire during working time. These workers were also
encouraged to participate via an initial invitation and a subsequent
reminder on closed-circuit television and local weekly electronic
newsletter as well as via email sent by the president of the local
council of nurses, the multidisciplinary council, and the group of
volunteers to their respective members. Physicians were contacted
via the administrative secretary of the Department of Family Medi-
cine and General Practice.
In LTC facilities in Quebec, we find 2 types of hands-on caregiver
job with a secondary-level training that provide basic care in
healthcare facilities: patient assistant and nursing assistant. A nursing
assistant is a person who provides residents with bedside care and
performs the duties and tasks planned by the nursing and medical
staff (eg, prepare and administer medications, take patients’blood
B.-S. Leclerc et al. / JAMDA 15 (2014) 207e213208
pressure and temperature). A patient assistant is a person who helps
residents with meals, dressing, personal hygiene, mobility, and other
daily activities.
The list of employees was provided by the human resources
department of the institution and the list of volunteers by the head of
the volunteer service. The questionnaire was administrated from mid-
May to mid-June 2013 in French, which is the official working lan-
guage in Quebec, using a web-based version through LimeSurvey for
all professionals with an institutional email address and a paper-based
version for nursing assistants, patient assistants, volunteers, and
physicians. Completed paper-version questionnaires were placed in a
pre-addressed return envelope and subsequently in a labeled box.
Completion of the questionnaire took approximately 10e15 minutes,
and no compensation was provided to the participants.
The study was approved by the executive director of the institu-
tion and conducted in the context of the legal mandate of the
governmental act respecting health services and social services and in
accordance with the ethical standards of the university institution.
The participants were clearly informed that their participation was
voluntary and that no names or identifying features were needed.
Questionnaire
Attitudes are composed of ideas and beliefs that are attached to
specific emotions.
27
A belief is an internal feeling that something is
true, a value is a stable and enduring belief about the importance a
person attaches to something, and an attitude is the way a person
expresses beliefs and values through words and behavior. Despite this
possible distinction, these interrelated concepts are considered as a
whole (employees’view or way of seeing) and no attempt is made to
distinguish them in our study.
We developed an assessment tool on the basis of existing ques-
tionnaires and adapted the questions to our particular purpose,
notably the questionnaire of Zapka et al
28
about palliative and end-of-
life care and the IPC65 questionnaire from Bédard et al
29
about
interdisciplinary clinical practice. Statements/questions were selected
according to their perceived relevance based on the opinion of a group
of concerned managers and long term care workers. A pre-test was
conducted with a sample of 10 participants of different job categories
to ensure the relevance and understanding of the survey questions for
any respondent. A final 24-item questionnaire was created after minor
modifications in the wording, which covers 5 key areas of issues
related to “family-centered”end-of-life care (interdisciplinary, care
for patient’s relatives, death and end-of-life care, psychological
distress, and health worker’s feelings). It includes 10 positively and 14
negatively worded statements, to which respondents use a 4-point
bipolar Likert scale of 1 ¼strongly disagree, 2 ¼disagree, 3 ¼agree,
and 4 ¼strongly agree. In the context of this study, a positive attitude
indicates a higher agreement rating of the positive perspectives and
disagreement with more of the negative perspectives.
Data about the respondents’place of work and job category were
also collected, after an introduction that explained the nature and
purpose of the survey and guaranteed anonymity and confidentiality
of information obtained.
Data Analysis
Data entry of the paper-version of the questionnaire was made in
Excel. A random sample of survey questionnaires was selected to cross-
check the data entry. SPSS v. 19.0 (SPPS Inc, Chicago, ILs) was used for all
statistical analysis. Two-tailed significance level was set at 0.05.
Descriptive statistics were used to summarize the data. Missing
data (partial nonresponse) counted for less than 5%. They occurred
more frequently in patient assistants and volunteers than in any other
job categories. Item-by-item responses were arbitrarily separated
into 3 categories to highlight the most important observations and
trends: “polarized opinion”category (75% who agree or disagree
with the statement, from which 50% who strongly agree or
disagree), “strong consensus”category (75% who agree or disagree
with the statement), and “mixed opinions”category (20% in at least
three distinct response categories).
The negatively keyed items were reversed and items missing
values was replaced using the “median of nearby points”imputation
method before computing a total attitude score as the sum of the
individual item scores. Thus, the average score for an individual item
lies between a theoretical maximum positive attitude of 4 and a
minimum negative attitude of 1. A missing value occurred in at least
1 item response of 25% of the sample of respondents. The median is
calculated by using complete observation values under and above the
missing data for the specific job category of the respondent, and this
value is imputed instead of the missing data. Statistics calculated from
the set of values including imputed data given substantially the same
values than with the original data set, so that only the results from the
former method are reported in the article. Possible total scores can
range from 24 to 96. A higher score indicates a more positive attitude
of healthcare workers toward caring for the LTC residents.
Five key area scores were computed in the same way as the total
score as “interdisciplinary”(Q3, Q7, Q11, Q16, Q19, Q22), “care for
patient’s relatives”(Q1, Q2 and Q10), “death and end-of-life care”(Q4,
Q6, Q8, Q12, Q13, Q20, Q24), “psychological distress”(Q5, Q9, Q23),
and “health worker’s feelings”(Q14, Q15, Q17, Q18, Q21). The group
average differences were compared between facilities and job cate-
gories with the analysis of variance test. Post-hoc comparisons were
performed using the Bonferroni or Tamhane correction after verifi-
cation of the homogeneity of variance assumption by the Levene’s test.
Results
Study Participants
Respondents are mostly patient assistants (52%), nursing assis-
tants (23%), and registered nurses (11%). Members of every other
category taken individually counted forless than 4% or 14% if taken all
together as a single group. Five percent worked in more than 1
establishment during the reporting period. The percentage of re-
spondents from each LTC facility and job category included in the
studied sample was proportional to the corresponding group from
the target population sought.
Overall Results
Table 1 reports the percentage of Likert scale responses for each
item and the corresponding average score.
Item responses in the “strong consensus”category attest to
congruence among health workers in their personal beliefs, values
and attitudes about “bereavement care responsibility”(Q2; see
Table 1 for the exact wording of the statements/questions), “team
plan of care”(Q3), “psychological suffering”(Q5), “pain medication
hastening death”(Q6), “sufficiency of team communication”(Q7),
“teamwork clarifying needs”(Q11), “preparation for death”(Q12),
“guilt after death”(Q15), “teamwork vision for delivery”(Q16), “grief
after death”(Q18), “sharing about patient’s difficulties”(Q19), “feeling
of failure”(Q21), “teamwork benefits for residents”(Q22), and
“obligation to inform about death”(Q24). Among these responses,
even more than 50% of workers strongly agree or disagree (indicative
of polarization) about Q3, Q5, Q6, Q11, Q15, Q16, Q21, Q22, and Q24.
However, health workers surveyed have mixed opinions about
“suffering of grief”(Q1), “prognosis and hope”(Q4), “talking about
B.-S. Leclerc et al. / JAMDA 15 (2014) 207e213 209
death”(Q8), “interference of families”(Q10), “cultural and religious
affiliation”(Q13), “caring is depressing”(Q14), “emotional distress of
families”(Q17), and “normality of depression”(Q23).
The average total score was 70.6 (standard deviation ¼6.0). The
median and modal total scores were 70.0 and 69.0, respectively. The
individual total scores ranged from 52 to 88.
Differences Between Facilities and Job Categories
There is no difference in the attitude score between different fa-
cilities. However, as Table 2 shows, there are statistically significant
differences across job categories. Overall, the attitudes of registered
nurses, physicians, rehabilitation staff, and clinical managers were
significantly more positive than the attitudes of nursing assistants,
patient assistants, and volunteers.
Discussion
The results of this study indicate that healthcare workers had a
relatively overall positive attitude toward interdisciplinary practice
and end-of-life palliative care for LTC residents, as was found by
Zapka et al,
28
Lange et al,
23
and Braun et al
27
in other settings. Our
Table 2
Differences of Average Key Area Values About Attitudes Toward Death, End-of-Life Palliative Care, and Interdisciplinary Practice in Long Term Care Providers Between Facilities
and Job Categories
Key Area (Range of Possible Scores) a
Registered Nurses
and Physicians
n¼327
b
Nursing Assistants
n¼145
c
Patient Assistants
and Volunteers
n¼69
d
Rehabilitation Staff
and Clinical Managers*
n¼88
All Workers
n¼629
PValues and
Group Differences
y
Interdisciplinary (6e24) 21.7 20.6 20.0 21.7 20.5 a,d >b,c
Care for patient’s relatives (3e12) 9.3 8.1 7.7 9.4 8.1 a,d >b>c
Death and end-of-life care (7e28) 19.0 18.2 17.8 19.0 18.1 a,d >c
Psychological distress (3e12) 7.9 7.8 8.1 8.3 8.1 c,d >b
Health worker’s feelings (5e20) 17.0 16.0 15.3 16.5 15.8 a >b,c; d >c
Total score (24e96) 74.9 70.7 69.0 74.9 70.6 a,d >b>c
Groupings were necessary given the small numbers of respondents in some categories.
*The “rehabilitation staff and clinical managers”category includes dieticians, occupational therapists, physiotherapists, psychologists, social workers, clinical officers, and
heads of unit.
y
The index indicates which groups are different from which other groups. The average differences are significant at the 0.05 level corrected for multiple comparisons.
Table 1
Attitudes About Death, Dying, End-of-Life Palliative Care, and Interdisciplinary Practice in Long Term Care Providers (n ¼629)
Items Strongly
Disagree %*
Somewhat
Disagree %
Somewhat
Agree %
Strongly
Agree %
Average
Score
y
Polarization of Opinion
5. Psychological suffering can be as severe as physical suffering 1.8 2.2 14.7 81.3 3.76
22. Teamwork brings real benefits to residents at the end of life 1.3 2.5 28.2 68.0 3.64
16. A clear vision of the healthcare team helps to ensure better delivery of care and services 1.6 2.6 33.1 62.7 3.58
15. I feel guilty after the death of a resident 66.1 26.7 4.2 2.9 3.57
11. Team work can clarify and better target the different needs of the resident and family
members
1.9 3.4 31.5 63.2 3.56
3. The plan of care must be built by rallying all stakeholders 2.6 5.2 33.8 58.3 3.49
21. When a resident dies, I feel as if I have failed as a healthcare provider 60.1 30.3 6.2 3.4 3.48
24. The care team has an obligation to tell residents and family members when death is imminent 5.2 12.0 31.0 51.8 3.31
6. At their request, residents at the end of life should be given whatever medication is necessary to
relieve pain, even if it hastens death
5.0 9.8 27.7 57.4 1.62
Consensus of Opinion
7. Communication between members of the team is sufficient to allow true teamwork 4.5 11.1 40.7 43.6 3.23
2. The team has a responsibility to provide bereavement care to the resident’s family after death 4.4 14.1 46.0 35.6 3.13
12. The care team has a responsibility to help residents prepare for death 5.3 12.7 45.7 36.3 3.13
18. When one of my residents dies, I grieve for them 38.2 40.0 17.9 3.9 3.12
19. I feel comfortable to share the difficulties faced by a resident at the end of life or their family
members with my colleagues or documenting discussion them in the record
10.2 14.3 41.6 33.9 3.00
Mixed Opinions
14. Caring for residents who are dying is depressing 32.6 37.9 22.2 7.3 2.96
1. There is little that can be done to ease the suffering of grief 33.4 31.6 24.1 10.9 2.88
8. Talking about death tends to make residents at the end of life more discouraged 23.5 43.8 21.7 11.1 2.80
17. I dread having to deal with the emotional distress of family members 19.8 36.7 33.8 9.7 2.68
4. It is not possible to tell residents or their families the truth about a terminal prognosis and
maintain hope
13.0 27.4 40.1 19.5 2.33
13. It is easier to talk about death and dying with someone of my own cultural or religious group
than with someone who is not
11.4 27.8 35.3 25.5 2.25
23. Depression is normal in residents at the end of life 11.2 25.9 36.1 26.7 2.21
10. Family members tend to interfere in the care of residents at the end of life 6.0 22.4 49.7 22.0 2.12
9. Depression is not treatable in residents at the end of life 26.8 46.6 16.7 9.9 2.09
Unclassified Item
20. Suggested procedures or treatments sometimes give residents/family false hope 15.5 45.4 32.1 7.1 2.71
The items are classified according to the average score within each category.
*Results expressed in percentage values are computed from the original response format of the statements and exclude the missing data (partial nonresponse), which
always counted for less than 5%.
y
Item attitude scores are computed from the reversed negatively keyed items (eg, items 1, 4, 6, 8, 9, 10, 13, 14, 15, 17, 18, 20, 21, 23) and replaced missing data by imputed
values before calculation.
B.-S. Leclerc et al. / JAMDA 15 (2014) 207e213210
results also showed moderate to strong positive attitudes toward
more than one-half of the selected aspects of care. However, the at-
titudes were more mixed about 10 other aspects and a higher per-
centage of respondents (from 27% to 72% agree with the statements)
indicated negative attitudes toward them. By reporting the key area
scores on an equivalent basis of 100 to facilitate comparisons, we note
that attitudes were more favorable for the items in the “inter-
disciplinarity”(20.5/24 or 85%) and “health worker’s feelings”areas
(15.8/20 or 79%) than for the other key areas.
A few findings merit comment. Interdisciplinary work seems to be
an integrated value in the teamwork of healthcare workers. However,
even if it is recognized as useful, there are still currently 15% of par-
ticipants who find the present communication within their team does
not allow for such work and 25% are not comfortable sharing the
difficulties of residents with their colleagues. The majority of partic-
ipants (72%) agree that relatives interfere in the care provided to the
resident at the end of life. This result is surprising and unexpected. If
respondents interpreted this term to the letter as “to be or create a
hindrance or obstacle,”one would find this to be worrisome. Two
explanations can be advanced if we consider that what is good quality
of care is essentially a consensus decision between care staff, resident,
and families. First, the managers and specialized clinical care advisors
consulted to better understand this result explained it by saying that
LTC residents display multiple problems that become increasingly
complex as their families who sometimes also present problematic
behaviors and dysfunctional situations that healthcare workers also
have to deal with. Second, perhaps cultural differences between
practitioners and residents/families may explain a part of the result.
As hypothesized by Frahm et al
30,31
differences in decision-making
practices (individual vs familial), language barriers between profes-
sional providers and residents or family, or overall differences in trust
or viewpoint about systems of care may be potential areas of conflict.
Shared values, traditions, norms, customs, lived experiences, and the
role of institutions (ie, family, religion, marriage) of a group of people
dictate how one will interact with service providers and whether one
will chose to exercise control and autonomy in an end-of-life care
process.
32
When working with ethnic minority patients, who tend to
rely more on informal supports than formal supports, family may be
an even greater aspect of the care plan. For practitioners, who operate
on a Western-based medical model of care, this may be a source of
contention.
32
Conflicts between the value systems of the healthcare
provider and the resident/family arise and failure to deal with them
properly may result in feeling that families are a barrier to care.
On another topic, 82% of participants believe that it is their re-
sponsibility to help residents prepare for death. At the same time, 33%
of respondents believe that talking about death with a resident at the
end of life and/or his family tends to be discouraging. There is a need
to improve communication with residents and families about diag-
nosis and prognosis to ensure that effective communication takes
place.
19
Responses are fairly mixed that sharing the same cultural and
religious background facilitates discussion on the topic of death. The
majority (61%) agrees with this idea. In this way, counseling offered to
the resident should be based on the experience and cultural com-
petencies of practitioners who provide care at the end of life and all
should be capable of evoking death and reassure residents despite a
differing cultural background. As pointed out by the World Health
Organization, the patient and family is viewed as the “unit of care”
when palliative care is required.
33
Our result supports cultural
competence training for healthcare professionals. Knowledge and
awareness of cultural values, attitudes, and behaviors can assist
practitioners in avoiding stereotypes and biases, while creating pos-
itive interactions with patients that lead to better patient outcomes
than when the provider is less culturally aware.
32
For 83% of participants, the care team should be obliged to inform
the resident and family when death is imminent. Communication
about prognosis has been associated with significantly fewer
aggressive medical interventions near death and enhanced quality of
life in patients and bereaved family members.
34
In Québec, the official
Act Respecting Health Services and Social Services,
35
states that
“every user of health services and social services is entitled to be
informed of his state of health and welfare and to be acquainted with
the various options open to him and the risks and consequences
generally associated with each option.”Still, 17% of the participants do
not share this idea.
As many as 63% of respondents find depression for a resident at
the end of life is normal, whereas 73% of them are in agreement with
the fact that depression is treatable. This demonstrates that most
respondents agree that despite a poor prognosis, depression is a
mental disorder that may require specific medication and psycho-
therapy conducted by a qualified professional. However, depression
should not be considered normal for residents at the end of life and
requires just as much attention to live the rest of their lives in the best
possible conditions as for anyone.
Death is a taboo subject in our society.Workers need to demonstrate
empathy with their residents, be compassionate, and be willing to take
the risk of personal involvement.
12
Dealing with residents and their
families can be very emotionally demanding.
36e40
Facing it every day
requires a degree of distancing for LTC providers.
37
Our study at-
tempted to understand worker’s feelings and how they coped. A ma-
jority of stakeholders in LTC (70%) do not view the end of life as
depressing; however, this means that about 30% find it to be the case. In
addition, 22% of responders say they grieved when residents died.
It seems interesting to point out that many workers are not
affected by the emotional distress of relatives. Indeed, 20% are
completely unaffected by the situation, 37% do not really care much,
but the other 44% do worry about the family’s sadness. One might
wonder where empathy and compassion fit and if the lack of
“distress/care”indicates lack of empathy and compassion. Each per-
son reacts differently, so we can expect that training will help to
understand this distress and balance the feelings of the workers.
We noted a relatively strong but, nevertheless, unexpected atti-
tude about the administration of medications at the request of resi-
dents at the end of life, “even if the medications hasten death.”This
response is surprising given that the World Health Organization
policy on palliative care affirms life and regards dying as a normal
process: it “neither hastens nor postpones death.”
33
This result may
be explained by the fact that some workers might have developed
new concerns since the Quebec National Assembly
41
established a
select committee for the purpose of examining the issue of dying
with dignity, which tabled its report at March 2012. Assistance in
dying, euthanasia, and assisted suicide has become the subject of a
broad public debate among Quebecers. The possibility to hasten
death might become an acceptable option for a larger share of the
population, which will lead to a change in social values.
However, healthcare workers of LTC facilities did not represent a
homogenous group of people according to their attitudes. In general,
registered nurses, physicians, rehabilitation staff, and clinical man-
agers showed more favorable attitudes than all other professional
groups and nursing assistants more favorable attitudes than patient
assistants and volunteers. This is not the case for the “psychological
distress”area. In this case, attendants and volunteers had more
favorable attitudes than nursing assistants. Nursing assistants scored
significantly higher on the overall scale as well as the “care for pa-
tient’s relatives”area than attendants and volunteers. The opposite is
observed for the “psychological distress”area, where values were
higher among patient assistants and volunteers than among nursing
assistants.
B.-S. Leclerc et al. / JAMDA 15 (2014) 207e213 211
Our results suggest that attitudes are not associated with the
amount of time spent in close proximity with dying patients but with
the academic postgraduate status of workers. Maybe the professional
status and membership in a professional corporation offers more
opportunities for continuing education, formal courses, scientific
conferences, lectures, case discussions, journal clubs, and a wide
range of professional activities that contribute to professional growth.
Some limitations should be considered when interpreting the
results of the current study. First, we used the evaluation measures
from existing questionnaires so further psychometric work is needed.
Second, a number of variables not included in the study, such as
education, sex, age, ethnicity, and work experience, were shown to
affect attitudes.
27
The lack of information about demographic
composition of the respondent sample impedes the explanation of
the origin of differences between occupational groups. This also may
limit the generalizability of the study findings to other samples with
different characteristics. Third, findings being self-reported measures
may have been affected by a social desirability response bias. Despite
the similarity in the pattern of job categories and places of work
characteristics between our sample and the solicited staff, volunteer
bias may affect our results as in any other study of this kind, and that,
in a direction that is difficult to estimate. Volunteer bias is systematic
error due to differences between those who choose to participate in
studies and those who do not. For example, newer staff and staff who
do not have strong written French language skills may be less likely to
respond to written surveys. Staff perceiving their knowledge and
attitudes toward death, dying, end-of-life palliative care, and inter-
disciplinary practice as good may be more likely to respond.
Fourth, we have not collected data about cultural variables of
residents such as ethnicity, religion, language, nationality, or national/
geographical origin. We know that the population living in private
households on the local territory is multi-ethnic and one-half was
born outside of Canada. The 2011 Canadian census top 10 of the more
significant groups include Lebanese, Moroccan, Chinese, Greek,
Egyptian, Algerian, Vietnamese, Haitian, Romanian, and SriLankan,
respectively. However, according to the managers’point of view, the
ethnic and cultural origin of the sampled LTC residents would be less
diverse than that of the surrounding territory’s population, but the
diversity tends to increase. This demographic trend increases the
likelihood that our patients’values may not be consistent with those
of traditional Western-based medicine.
32
Some studies documented
the differences in end-of-life preferences and decision-making be-
tween culturally diverse resident groups and pointed out the need to
understand cultural values and beliefs that influence end-of-life
care.
30e32
Lastly, there is a certain arbitrary polarization of the word state-
ments between positive and negative. This is because of the quanti-
tative nature of the questionnaire. Therefore, nuances can be reduced
within a complex situation. It is not always clear whether the re-
sponses captured respondents’attitude toward a particular aspect or
his judgment about it based on his experience of care. It would be
highly desirable to explore some aspects in more depth using per-
sonal interviews. A study of the attitudes of health workers will not
be complete without adding qualitative methodology (eg, running of
focus groups for the different grades of workers) to more clearly
delineate what the issues are. This is important for future action.
Nevertheless, our results could serve as an initial step toward a re-
flexive narrative environment in which workers can express their
personal feelings and perceptions.
Conclusions
The current study addressed the issue of death, dying, end-of-life
palliative care, and interdisciplinary practice in LTC facilities. Despite
a consensus of positive attitudes for several aspects of care, we noted
mixed opinions with respect to a significant number of other aspects.
There are statistically significant differences across job categories. The
results of this study suggest that beliefs, values, and attitudes,
including communication among providers and between providers
and residents and their families, need to be taken into account in LTC
facilities. Education, training, and support programs for LTC providers
should include discussions of attitudes toward death, dying, and end-
of-life palliative care. Based on the data collected in the study, patient
assistants, volunteers, and nursing assistants are most likely to
benefit. Policy makers must prepare LTC workers for the challenges
posed by growing populations facing end-of-life decisions.
The suggested remedies pass through an honest questioning of
our practices, and of the observed differences of beliefs, values, and
attitudes toward death, dying, palliative and interdisciplinary care in
long term care workers. As well, the naive official call for interdisci-
plinary and work-related continuing education and training oppor-
tunities, proposed in the context of increasing pressures for cost and
staff reduction, can be questioned.
Acknowledgments
The authors thank all those who have helped with the conduct of
this study, especially the directors of the LTC facilities (Nicole Perrier,
Lynda Ricard, and Guylaine Simard) and acknowledge healthcare
workers who responded to the questionnaire. We would like to
acknowledge the contribution of Jane G. Zapka from the Medical Uni-
versity of South Carolina and Thomas Poder from the Centre hospitalier
universitaire de Sherbrooke who provided us with the tools used in this
study. Special thanks to Bruce Charles Bezeau for the English revision.
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