Research Research

Dec
Ethical issues in nursing home emb
er
201

palliative care: a cross- 8.

► Additional material is
published online only. To view
please visit the journal online
(http://dx.doi.org/10.1136/
bmjspcare-2018-001643).
1
Institute of Nursing and Health
Research, Ulster University
Jordanstown, Newtownabbey,
UK
2
School of Nursing, McMaster
University, Hamilton, Ontario,
Canada
3
School of Nursing and
Midwifery, Queen’s University,
Belfast, UK
Correspondence to
Dr Deborah H. L. Muldrew,
Institute of Nursing and Health
Research, Ulster University
Jordanstown, Newtownabbey
BT37 0QB, UK;
Dow
nloa
ded
national survey from
http:
//spc
are.
1 2 3 bmj.
Deborah H. L. Muldrew, Sharon Kaasalainen, Dorry McLaughlin, com/
3
Kevin Brazil on 3
Janu
ary
AbstrAct were aged ≥65, 7.9% of whom live in 201
Objectives With an increased dependency on collective dwellings such as healthcare 9 by
nursing homes to provide care to the ageing 2
facilities. Population predictions suggest gues
t.
population, it is likely that ethical issues will also that 25% of the Canadian population Prot
increase. This study aimed to identify the type 3 ecte
will be >65 by 2030, and currently
of ethical issues and level of associated distress d by
76% of this population reported at least
experienced by nurses providing palliative care in
copy
4 right
nursing homes in the UK and Canada, and pilot one chronic condition. Similarly, in the
.
the Ethical issues in Palliative Care for Nursing UK, the number of people aged ≥65 is
projected to rise by >40% by 2033,
Homes (EPiCNH) instrument in Canada.
Methods A cross-sectional survey design was increasing the prevalence of advanced,
5
used. One hundred and twenty-three nurses progressive illnesses. In 2015, Canada
came 2nd in the Americas and 11th glob-
located in 21 nursing homes across the UK and
Canada completed the EPiCNH instrument. ally on the quality of death index, and the
results Frequent ethical issues include UK came first overall. This was attributed
upholding resident autonomy, managing family to multiple factors including strong and
distress, lack of staff communication and lack of effective national policies, high levels of
time in both countries. Higher levels of distress public spending and public awareness.
6

d.muldrew@ulster.ac.uk resulted from poor communication, insufficient

Received 23 August 2018
Revised 19 November 2018
Accepted 28 November 2018
© Author(s) (or their
employer(s)) 2018.
No
commercial re-use. See rights
and permissions. Published by
BMJ.
To cite: Muldrew DHL,
Kaasalainen S, McLaughlin D,
et al. BMJ Supportive &
Palliative Care Epub ahead
of print: [please include Day
Month Year]. doi:10.1136/
bmjspcare-2018-001643
training, lack of time and family disagreements.
Nurses in Canada experienced a greater
frequency of ethical issues (p=0.022); however,
there was no statistical difference in reported
distress levels (p=0.53). The survey was positively
rated for ease of completion, relevance and
comprehensiveness.
conclusions Nurses’ reported comparable
experiences of providing palliative care in UK and
Canadian nursing homes. These findings have
implications on the practice of care in nursing
homes, including how care is organised as well
as capacity of staff to care for residents at the
end of life. Training staff to take account of
patient and family values during decision-making
may address many ethical issues, in line with
global policy recommendations. The EPiCNH
instrument has demonstrated international
relevance and applicability.
IntrOductIOn
Population ageing is evident in almost all
developed countries, the fastest growing
1 tion has resulted in increased pressures on
age group being the oldest-old. In
Canada in 2011, almost 5 million people
Since this report, Canada has placed
significant investment into advancing
7 8
these areas, including specific support
for long-term care facilities (LTCFs)
9
among other settings. This invest-
ment makes Canada an ideal country to
compare with the UK, which already has
invested in these key areas.
Palliative care refers to ‘the active
holistic care of patients with advanced
10
progressive illness’ and is increasingly
recognised as a strong feature of nursing
home care. As the older population
increases, so too does the demand on
nursing home services to provide high-
quality palliative care, with an increased
number of people living and dying while
11
receiving nursing home care. These
demands may be associated with the
complexity of caring for residents with
multiple comorbidities, lack of training
and high workload demands among
others. The higher level of dependency
due to complex care needs in this popula-
12
nursing homes staff and resources.

Muldrew DHL, et al. BMJ Supportive & Palliative Care 2018;0:1–9. doi:10.1136/bmjspcare-2018-001643 1
 Dec
bAckgrOund research team that the EPiCNH may be suitable to the emb
An ethical issue or challenge occurs where there is Canadian context. er
doubt, uncertainty or disagreement about what is 201
13 8.
morally good or right. At one end of the scale, you MethOds Dow
can be morally comfortable where you have identified nloa
Aim ded
an ethical issue and are satisfied with the outcome. The aims of this research were to (a) identify the type from
The other end of the scale is moral distress, where of ethical issues and level of associated distress expe- http:
you witness an ethical issue, but are unsatisfied with //spc
rienced by nurses during palliative care provision in are.
the outcome yet are unable to do anything about it nursing homes in both the UK and Canada, and (b) bmj.
14
due to some external barrier. Ethical issues in palli- assess the acceptability of the EPiCNH survey instru- com/
ative care can arise from the legalities of end-of-life on 3
ment among Canadian nursing home staff. Janu
care, advance care planning, inappropriate use of ary
medical interventions and symptom-specific issues, 201
15 design 9 by
among others. A recent review of the international A cross-sectional survey design was utilised, imple- gues
16
literature suggested staff experience of ethical issues menting the EPiCNH survey instrument, and reported t.
is commonplace within nursing homes. A literature Prot
following the STROBE checklist for cross-sectional ecte
review identified that ethical issues experienced studies. d by
by nursing home staff clustered into four common copy
themes. Conflicting professional ethical principles right
setting .
occurred when medical and nursing ethical princi- The UK
ples conflicted, such as trying to care for a patient There are an estimated 4699 nursing homes across the
(beneficence), and their refusal of care (autonomy). UK. The median period from admission to death is 15
Breakdown of communication led to issues in deci- 22
months. Evidence would suggest that palliative care
sion-making and relational ethical issues, for example,
knowledge could be improved within the nursing home
including the patient and family in decision-making 23 24
about care choices. Challenges with distributive setting. Most nursing homes have some access to
justice due to lack of resources were evident, with lack specialist palliative care services; however, this is not
of training, time and access to medical specialists most a regularly occurring feature of care provision. Rather,
frequently cited. Organisational ethical issues centred it is dependent on requests from the homes for such
25
on quality of care provision, in particular, the chal- help. For this study, a random sample of 23 nursing
lenges to preserving dignity. With an increased depen- homes in the UK (Northern Ireland) were selected
dency on nursing homes to provide care to the ageing through a random number generation approach and
population, it is likely that these ethical issues will also contacted, of which 18 privately owned nursing homes
increase. with an average bed size of 35 (range: 24–81 beds)
Ethical issues may lead to moral distress and burnout agreed to participate. Staffing levels per nursing home
if not adequately addressed, affecting the quality of care are unknown in the UK, but guidelines suggest a ratio
provided. Ethical issues most likely to lead to moral from 1:5 to 1:10 care staff to residents depending on
distress include the implementation of care which does the time of day, with 35% of these being registered
26
not meet the residents’ wishes, is futile, or is not agreed nurses (RNs). Data collection was completed during
on by both the doctor and the nurse, or the resident October and November 2015 through two visits to
17 18 each site.
and their relatives, attributed to a lack of resources
and time to provide care. Through the identification of
frequent and distressing ethical issues within palliative Ontario
care, guidance can be provided to address these issues, There are approximately 630 LTCFs in Ontario, which
reducing moral distress and burnout for staff, which are significantly larger in size than typical UK nursing
27
ultimately will lead to better care. homes, however, similar in staffing ratios. Since
19
Findings by Lillemoen showed healthcare profes- 2010, only people with high/very high care needs are
sionals (HCPs) with the most frequent contact with eligible and, on average, 97% of residents have two or
28
residents were more likely to experience more ethical more chronic conditions. The average length of stay
issues, therefore, registered nursing staff are a key 29
is 2.5 years. Significant investments have been made
focus for research into ethical issues. To capture the in recent years into policy development to support
ethical issues experienced by HCPs, the Ethical Issues palliative care knowledge and integration into LTCFs.
in Palliative Care for Nursing Homes (EPiCNH) instru- For this study, a convenience sample of five LTCFs
ment was developed using guidance from Creswell and were contacted, of which three not-for-profit LTCFs
20
Plano Clark and psychometrically tested with data located in southern Ontario with an average bed size
21
from the UK. Given the recent investments in palli- of 274 (range: 205–378) responded positively and
ative care in Canada, and the changing organisation participated. Data collection was completed through
of nursing home care in Canada, it was viewed by the two visits to each site in May 2016.

2
Muldrew DHL, et al. BMJ Supportive & Palliative Care 2018;0:1–9. doi:10.1136/bmjspcare-2018-001643 2
Muldrew DHL, et al. BMJ Supportive & Palliative Care 2018;0:1–9. doi:10.1136/bmjspcare-2018-001643
Participants
All nurses including RNs and registered practical
nurses (RPNs) who were present on the day of data
collection were invited to participate. Individuals
could be included if they were >18 years, employed as
an RN or RPN at the time of the survey, had directly
provided palliative care to a patient and were able to
provide informed consent.
In the UK, RNs must complete a 3-year university
degree and register with the Nursing and Midwifery
Council. Comparatively, in Canada there are two
levels of nursing qualifications. RNs typically undergo
4 years of university-level training to receive a bach-
elor’s degree in nursing, whereas RPNs complete a
30 31
2-year diploma in practical nursing. Therefore,
RPNs have a more focused body of foundational
knowledge. They may have autonomy over some
patients, influenced by the complexity of their condi-
tion. As complexity increases, there is a need for RPNs
to consult with RNs.
data collection
Two days for site visits were agreed by the nursing
home managers. On the agreed dates, the researcher
(DM) visited the nursing home and supplied all nurses
who were working that day with the EPiCNH survey
instrument and requested they complete and return
it before the end of the day to a designated drop off
point in the nursing home. Response bias was mini-
mised through the anonymity of the surveys; however,
only staff working on those days were captured. The
EPiCNH instrument was presented as a paper booklet
with an instructional page at the front. This offered
a definition of palliative care, a definition of ethical
issues and instructions for the completion of the
instrument. Participants were asked to reflect on their
clinical experience with residents who had received
palliative care as it was noted that some nursing home
residents may not be in receipt of palliative care.
Measurement
The EPiCNH instrument consists of 26 items, scored
on two subscales; the Frequency Scale and the
Distress Scale (further details on the development
and psychometric properties of the instrument have
21 32
been previously published). The content validity
of the instrument is elucidated thought its construc-
tion, which included qualitative interviews with RNs
and healthcare assistants (HCAs) in nursing homes, a
review of the research literature, review by an expert
panel, followed by a pilot of the instrument in one
nursing home. The result of this exercise was the devel-
opment of an instrument that exploratory factor anal-
yses (EFA) identified as assessing six ethical domains;
processes of care (eg, lack of time), competency (eg,
providing care without appropriate training), resident
autonomy (eg, truth telling), burdensome treatment
(eg, initiating extensive life prolonging treatments),
Dec
quality of care (eg, unsatisfactory symptom manage- emb
ment) and communication (eg, conflict between HCPs er
21 201
on care). The qualitative findings, which guided the 8.
development of the EPiCNH survey instrument, can Dow
be seen to link to the factors revealed by the EFA. nloa
ded
Participants were asked to rate each item from 0 to from
4, with a score of 0 indicating the item did not occur http:
frequently or cause any level of distress, and a score //spc
are.
of 4 indicating high frequency or high distress. In bmj.
Canada, an additional feedback sheet was provided to com/
assess the acceptability of the survey instrument ques- on 3
Janu
tions (see online supplementary appendix 1). ary
201
sample size 9 by
gues
The sample size was based on the desired statistical anal- t.
ysis for the wider study, which included an exploratory Prot
32 33 ecte
factor analysis. Due to the ratio of nurses to health-
d by
care assistants in the sample, a minimum of 70 nurses copy
21 34
were required to complete all desired analysis. Based right
.
on the size of LTCFs in Canada, and the anticipated
response rate based on a previous phase of data collec-
tion in the UK (35%), three LTCFs were recruited.
statistical analysis
Mean scores and SDs were calculated per item to
understand the extent to which ethical issues were
experienced. Independent-samples t-tests were used
to compare the results from the Frequency Scale and
Distress Scale within the EPiCNH instrument between
the UK and Canada. The face validity was evaluated
through the survey feedback document on Likert type
scales from 1 (very easy/relevant) to 7 (very difficult/
not relevant) and a content analysis conducted on the
open-ended responses. To take into consideration
missing data, recruitment was aimed at 10% higher
than the required sample size. Additionally, means
were presented instead of raw scores to account for
missing data points across participants.
results descriptive data In total, 123 participants
completed the survey, including
69 RNs (response rate: 36.3%) from 18 nursing homes
in the UK, and 54 RNs and RPNs (response rate: 63.5%)
from three homes in Canada (figure 1).
The majority of participants were female (91.06%),
aged between 46 and 55 (29.27%), had spent <5
years working in a nursing home (39.02%) and had
a diploma (47.97%) or bachelor’s degree (31.71%) in
nursing (table 1). Similar patterns were evident in the
gender, education and experience level of nurses in the
UK and Canada.
Main results
Frequency scale results
Four of the five items with the highest mean scores on
the Frequency scale overlapped between the UK and
Canada. These items include issues around nutrition
 Dec
missing data point and two items had two missing data emb
points. er
201
8.
Distress scale results Dow
Similar to the Frequency scale results, four out of nloa
the top five items with the highest mean Distress ded
from
scores overlapped between the UK and Canada. Poor http:
communication resulting in reduced quality of care //spc
was the most distressing ethical issue in both countries, are.
bmj.
followed by insufficient training leading to profes- com/
Figure 1 Flow diagram of participants. RN, registered nurses; sional incompetence, lack of time and family disagree- on 3
RPNs,registered practical nurses. ments and distress. The five items with the highest Janu
ary
scores had means greater than two out of a possible 201
four. In particular, item 7 (mean=2.96; SD=0.97) 9 by
and hydration, best interests’ decision-making on gues
behalf of the resident, distress of families, poor staff scored particularly highly in the Canadian data set, t.
communication and lack of time to provide care. All relating to poor staff communication (table 3). Eight Prot
UK participants and two Canadian participants failed ecte
of the items within the Canadian data set and four of d by
the five items from the UK data set received a mean to complete the Distress scale. copy
score greater than two out of a possible four. Cana- right
.
dian nurses scored items five (mean=2.89; SD=1.20) Comparison between countries
and 14 (mean=2.89; SD=0.93) highest, which related There was a statistically significant difference in the
to refusal of food and fluids and witnessing family scores for the UK (mean=1.30; SD=0.56) and Canada
distress, respectively (table 2). The amount of missing (mean=1.53; SD=0.54) in the overall frequency of
data was very low on this scale. Three items had one ethical issues experienced (t=−2.31(121); p=0.022).
missing data point and three had two missing points in However, there was not a statistically significant
the UK data. In the Canadian data, six items had one difference between the UK (mean=1.74; SD=0.95)
and Canada (mean=1.83; SD=0.70) in the overall

Table 1 Demographic characteristics

UK Canada Total
n (%) n (%) n (%)
Work designation RN 69 (100) 16 (29.6) 85 (69.11)
RPN 0 (0) 38 (70.4) 38 (30.89)
Age (years) 18–25 9 (13.04) 2 (3.70) 11 (8.94)
26–35 20 (29.00) 14 (25.93) 34 (27.64)
36–45 9 (13.04) 10 (18.52) 19 (15.45)
46–55 21 (30.43) 15 (27.78) 36 (29.27)
56–65 9 (13.04) 11 (20.37) 20 (16.26)
66+ 0 (0) 2 (3.70) 2 (1.63)
Missing 1 (1.45) 0 (0) 1 (0.81)
Gender Female 59 (85.5) 53 (98.1) 112 (91.06)
Male 10 (14.5) 1 (1.9) 11 (8.94)
Education Nursing diploma 20 (29.0) 39 (72.2) 59 (47.97)
Bachelor’s in nursing 31 (44.9) 8 (14.8) 39 (31.71)
Master’s level qualification 5 (7.25) 3 (5.6) 8 (6.50)
Other 12 (17.39) 4 (7.41) 16 (13.01)
Missing 1 (1.45) 0 (0) 1 (0.81)
Years in nursing home 0–5 34 (49.28) 14 (25.93) 48 (39.02)
6–10 12 (17.39) 13 (24.07) 25 (20.33)
11–15 5 (7.25) 9 (16.67) 14 (11.38)
16–20 8 (11.59) 8 (14.81) 16 (13.01)
21–25 6 (8.70) 4 (7.41) 10 (8.13)
26–35 4 (5.80) 3 (5.56) 8 (5.69)
36–40 0 3 (5.56) 3 (2.44)
RN, registered nurses; RPNs,registered practical nurses.
 Dec
Table 2 ‘Frequency’ items per country (scale 0–4) emb
er
UK Canada 201
Item Mean (SD) Mean (SD) 8.
Dow
5. I have to care for residents only accepting small amounts or refusing food and fluids near the end of life 2.74 (1.17) 2.89 (1.20) nloa
ded
6. I have made a decision in theresident’s best interest to prevent them coming to harm or unnecessary risk 2.72 (1.21) 2.22 (1.19) from
14. I witness distress from family or care partners 2.33 (.93) 2.89 (.93) http:
//spc
24. I am involved in non-direct care activities which reduce time spent with the residents 2.01 (1.4) 2.21 (1.18) are.
7. I witness how poor staff communication results in diminished quality of care to residents 1.84 (1.13) 2.37 (1.14) bmj.
com/
15. I have to follow the family’s or care partner’s wishes for the resident’s care when I do not agree with them 1.70 (1.12) 2.13 (1.12) on 3
Janu
2. At times, I have not been honest with a resident because I thought it was in their best interest 1.54 (1.04) 1.38 (.99) ary
9. I have to initiate extensive life-saving actions when I think they only prolong death (e.g. PEG feeding,sub-cut fluids) 1.52 (1.22) 1.64 (1.16) 201
9 by
23. I have been involved in what felt like an unnecessary hospital admission 1.52 (1.17) 1.35 (1.28) gues
4. I struggle to provide care to a resident due to their verbal or physical resistance 1.48 (1.17) 2.11 (1.04) t.
Prot
8. I have observed professional incompetence due to insufficient staff training for providing nursing care 1.46 (1.15) 1.93 (1.08) ecte
d by
20. I don’t have enough time to provide the resident with the care she/he needs 1.43 (1.17) 2.33(1.36) copy
22 I find physician support lacking for resident care 1.30 (1.22) 1.19 (1.21) right
.
19. I am not able to provide the care I want due to lack of resources within the care home 1.10 (1.14) 1.30 (1.36)
21. I am unable to provide the quality of care I want due to conflicting care directions by external health and social care
services 0.99 (1.06) 0.85 (1.01)
10. I don’t know what care to provide when no advance care plan had been agreed 0.97 (1.11) 0.87 (.85)
16. I am asked to provide care to the resident according to a senior clinician, specialist palliative care nurse or charge nurse
against my personal or professional opinion 0.96 (1.06) 0.87 (.89)
1. I find it difficult to protect a resident’s rights and dignity 0.90 (0.88) 1.33 (0.93)
25. I feel the pain management is not satisfactory 0.90 (0.99) 1.59 (1.16)
11. I don’t know what to do when unclear resident care instructions have been provided by a senior clinician 0.80 (0.87) 0.81 (.81)
3. I have to follow a request by a senior clinician not to discuss the resident’s diagnosis with them when he/she asks for it 0.75 (1.03) 0.96 (1.10)
26. I have witnessed end-of-life care which I felt was not satisfactory 0.67 (1.05) 1.50 (1.16)
18. I witness staff avoiding residents at the end of life due to their fears about dying 0.67 (0.85) 0.85 (0.74)
17. I am required to provide palliative care for residents I don’t feel trained to care for 0.54 (0.90) 0.52 (0.95)
12. I don’t feel confident to voice my opinion regarding palliative care decisions 0.52 (0.76) 0.91 (1.01)
13. I feel powerless in decision-making during resident care 0.49 (0.76) 0.89 (0.93)

level of distress elicited by the ethical issues reported dIscussIOn

(t=−0.63 (108.80); p=0.53).
Face validity
(Canada)
The mean score of the EPiCNH instrument for ease
of completion was 2.17 (SD=1.29) out of a possible
seven, suggesting the majority of participants found
it very easy to complete. Thirteen participants left
additional comments explaining the survey was
‘straightforward’, ‘easy to understand’ and ‘clear
and concise’. Negative comments included ‘I would
have liked to explain my answers’, ‘requires a lot of
thought and recalling experiences’ and ‘some ques-
tions are too closed’. In terms of relevance, partic-
ipants provided a mean score of 2.16 (SD=1.39)
and suggested it was, ‘very relevant’, relatable to the
‘day-to-day experience in palliative care’ and ‘well
formulated’
This study examined nurses’ experiences of ethical
issues during palliative care provision in nursing
homes in the UK and Canada, and assessed the accept-
16
ability of the UK developed survey instrument. The
results highlight that the most frequent ethical issues
arise from nutrition and hydration, best interests’ deci-
sion-making on behalf of the resident, family distress,
poor staff communication and lack of time. Higher
mean scores for distress resulted from poor commu-
nication, insufficient training leading to professional
incompetence, lack of time and family disagreements
and distress. While there was significant overlap in
the items reported most frequently and eliciting most
distress, nurses in Canada experienced a statistically
significant greater frequency of these reported ethical
issues. However, there was no difference in the levels
of reported distress between respondents in the two
countries. The survey showed itself to be acceptable
 Dec
Table 3 ‘Distress’ items per country (scale 0–4) emb
er
UK Canada 201
Item Mean (SD) Mean (SD) 8.
Dow
7. I witness how poor staff communication results in diminished quality of care to residents 2.47 (1.30) 2.96 (.97) nloa
ded
8. I have observed professional incompetence due to insufficient staff training for providing nursing care 2.42 (1.37) 2.81 (1.21) from
20. I don’t have enough time to provide the resident with the care she/he needs 2.25 (1.46) 2.71 (1.35) http:
//spc
24. I am involved in non-direct carea ctivities which reduce time spent with the residents 2.19 (1.46) 2.16 (1.12) are.
bmj.
15. I have to follow the family’s or care partner’s wishes for the resident’s care when I do not agree with them 2.17 (1.14) 2.43 (1.06)
com/
23. I have been involved in what felt like an unnecessary hospital admission 2.15 (1.36) 1.44 (1.43) on 3
Janu
1. I witness distress from family or care partners 2.05 (1.12) 2.60 (.98) ary
5. I have to care for residents only accepting small amounts or refusing food and fluids near the end of life 2.01 (1.31) 1.71 (1.17) 201
9 by
4. I struggle to provide care to a resident due to their verbal or physical resistance 2.00 (1.34) 2.40 (1.18) gues
t.
22. I find physician support lacking for resident care 1.95 (1.52) 1.64 (1.50)
Prot
2. At times, I have not been honest with a resident because I thought it was in their best interest 1.92 (1.02) 1.68 (1.24) ecte
d by
9. I have to initiate extensive life-saving actions when I think they only prolong death (e.g. PEG feeding, sub-cut copy
fluids) 1.76 (1.30) 2.12 (1.35) right
10. I don’t know what care to provide when no advance care plan had been agreed 1.70 (1.47) 1.44 (1.42) .
25. I feel the pain management is not satisfactory 1.66 (1.55) 1.98 (1.46)
19. I am not able to provide the care I want due to lack of resources within the care home 1.65 (1.52) 1.71 (1.34)
16. I am asked to provide care to the resident according to a senior clinician, specialist palliative care nurse or
charge nurse against my personal or professional opinion 1.57 (1.43) 1.37 (1.39)
1. I find it difficult to protect a resident’s rights and dignity 1.55 (1.34) 1.73 (1.21)
21. I am unable to provide the quality of care I want due to conflicting care directions by external health and social
care services 1.53 (1.47) 1.20 (1.25)
3. I have to follow a request by a senior clinician not to discuss the resident’s diagnosis with them when he/she asks
for it 1.47 (1.52) 1.34 (1.27)
26. I have witnessed end-of-life care which I felt was not satisfactory 1.41 (1.70) 2.29 (1.42)
6. I have made a decision in the resident’s best interest to prevent them coming to harm or unnecessary risk 1.40 (1.08) 1.69 (1.16)
11. I don’t know what to do when unclear resident care instructions have been provided by a senior clinician 1.37 (1.35) 1.49(1.33)
17. I am required to provide palliative care for residents I don’t feelt rained to care for 1.15 (1.49) 0.88 (1.32)
18. I witness staff avoiding residents at the end of life due to their fears about dying 1.08 (1.31) 1.27 (1.23)
12. I don’t feel confident to voice my opinion regarding palliative care decisions 1.07 (1.35) 1.27 (1.30)
13. I feel powerless in decision-making during resident care 0.98 (1.35) 1.27 (1.22)

to Canadian respondents on ease of completion, rele-
vance and comprehensiveness.
Previous research considered the ethical issues of
healthcare aides within Canadian nursing homes and
revealed pain control, provision of perfunctory care,
lack of resources and opting for family wishes over
35
the wishes of the resident as key issues. The current
evidence builds on these findings, highlighting lack of
resources (time) and distress arising from family inter-
actions as shared ethical issues irrespective of training
and role variations.
Ethical issues were experienced more frequently in
Canada, which may be attributable to the number of
RPNs in the sample. RPNs have less training, including
36
less training on how to manage ethical issues. Further-
more, RPNs in Canada spend more time at the bedside
working with residents and families and hence experi-
ence these ethical issues. Combining these factors with
limited training and lower rank on the hierarchical
structure in LTCFs could help explain the differences
between the samples in these two countries.
While studies considering ethical decision-making in
nursing homes found staff were unaware of the ethical
nature of their decisions, they were inclined to choose
resident safety over autonomy and report on an ethics
37 38
of care perspective instead of abstract principles.
The current study concurs with the focus on ethics of
care, with more frequent and distressing issues being
associated with the ethics of care perspective including
family distress and preventing harm.
International research on ethics and nursing home
care supports the issues identified specific to pallia-
tive care. Refusal of food and fluids (item 5) and deci-
sion-making to prevent harm (item 6) were among the
most frequently reported issues in this study and both
related to resident autonomy and the conflict with

acting in the resident’s best interests, mirroring the
39 40
international literature. Witnessing family distress
(item 14) and following family wishes against personal
opinion (item 15) related to issues arising from inter-
actions with the family, supporting previously reported
ethical issues including disagreements between care
41
staff and families on life-prolonging treatment,
and the process of informing relatives about care
19
processes. Lack of time (item 20) and too many indi-
rect care activities (item 24) scored highly on both the
Frequency scale and Distress scale. The ethical issue of
lack of time to provide care supports the work by Juth-
42
berg et al, who found lack of time linked to troubled
conscience, and caused tension as reduced time allo-
cation per person resulted in an inability to provide
43
person-centred care. Finally, poor staff communi-
cation (item 7) and observing professional incompe-
tence (item 8) mirror the staff shortfalls including lack
of knowledge, education and knowledge of scope of
responsibility which have previously been identified
41 44–47
within the ethics literature in nursing homes and
may contribute towards reduced quality of care.
In summary, upholding resident autonomy, managing
distress of families, impact of lack of staff communica-
tion and lack of time were associated with higher sores
of the Frequency scale, whereas poor communication,
insufficient training, lack of time and family disagree-
ments and distress were associated with higher scores
on the Distress scale. This supports previous find-
19 37–47
ings from nursing homes and highlights which
ethical issues are most associated with palliative care
provision.
Limitations of this research have been acknowledged.
Non-response bias at the nursing home level may have
occurred as those who experience more ethical issues
may not have wishes to participate. Self-selection bias
may also be present as, while all nurses were provided
the questionnaire, those who returned it might have
had a different experience than those who chose to
decline. These biases are more likely to be present in
the Canadian data set, which opted for convenience
sampling due to time and resource constraints within
the project, limiting the generalisability of the Cana-
dian data set. While similar issues may be present in
the UK data set, the use of random sampling at a site
level may minimise issues of bias. While there was
space at the end for comments, some Canadian partic-
ipants reported that some of the statements did not
capture in detail their experience, suggesting the need
for a qualitative component to explore the answers of
the participants and how the survey item translated
into a practical experience.
The involvement of two countries within this
research has demonstrated the transnational utility of
the EPiCNH instrument. The majority of ethical issues
reported in terms of frequency and distress overlapped
between the UK and Canada, revealing the pervasive-
ness of these issues in nursing homes.
Dec
Implications for practice, policy and research emb
The provision of training on ethical debate in palliative er
care had been acknowledged as a global recommenda- 201
48 8.
tion for improving palliative care by WHO. Training Dow
staff to take account of patient and family values and nloa
incorporate this into decision-making may overcome ded
from
many important ethical issues. http:
Resident autonomy, interactions with the family, //spc
lack of time and lack of staff competence have been are.
bmj.
identified to occur frequently and are associated with com/
high levels of ethical distress within nursing homes in on 3
both the UK and Canada. Future research should take Janu
ary
these findings and use them to develop an intervention 201
that would tackle these core ethical issues, potentially 9 by
through educational interventions, negotiation strate- gues
t.
gies or preventive ethics strategies. Prot
Nursing homes should be aware of the ethical strug- ecte
gles faced by their staff and use this information as a d by
copy
first step to addressing the ethical issues raised. These right
findings would also encourage a greater level of discus- .
sion within nursing homes regarding the everyday
ethical issues faced and offer suggestions for how to
overcome them, for example, how to balance resident
autonomy and preventing harm.
cOnclusIOns
Nurses reported comparable experiences of providing
palliative care in UK and Canadian nursing homes.
Key ethical issues include resident autonomy, clashes
with the family, lack of time and lack of staff compe-
tence. The majority of items overlap between the two
countries suggesting pervasiveness of these ethical
issues. These findings have implications on the prac-
tice of care in nursing homes, including how care is
organised as well as capacity of staff to care for resi-
dents at the end of life. Training staff to take account
of patient and family values during decision-making
may address many ethical issues, in line with global
policy recommendations. The EPiCNH instrument
has demonstrated international relevance and applica-
bility, therefore, may be suitable for research in other
countries who are considering the ethical issues expe-
rienced during palliative care provision in LTCFs.
Acknowledgements The research team extend their thanks to
the staff within each nursing home who helped coordinate the
research, and all of the nurses who participated
Contributors All authors have agreed on the final version and
meet at least one of the following criteria (recommended by the
ICMJE: http://www.icmje.org/ethical_1author.html).
Funding This study was funded by the Benevolent Fund for
Nurses in Northern Ireland’s Marcia Mackie Scholarship,
Queen’s University Belfast
Competing interests None declared.
Patient consent for publication Not required.
Ethics approval Ethical approval was sought from the Queen’s
University School of Nursing and Midwifery’s Research
Ethics Committee (Ref: 29.DPreshaw.12.15.M4.V2) and
the Hamilton Integrated Research Ethics Board (Ref: 1198).
Governance was sought from the manager of each nursing
home prior to data collection.
Provenance and peer review Not commissioned; externally
peer reviewed.
Data sharing statement Additional information relating to the
project can be accessed by contacting the corresponding author.
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