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A SURVEY OF ETHICAL ISSUES
EXPERIENCED BY NURSES CARING FOR
TERMINALLY ILL ELDERLY PEOPLE
S Patricia D Enes and Kay de Vries
Key words: culture; elderly people; ethics; palliative care; terminally ill patients
This study examined the ethical issues experienced by nurses working in a small group
of elderly persons’ care settings in the UK, using a survey questionnaire previously used
in other countries for examining the cultural aspects of ethical issues. However ‘culture’
relates not only to ethnicity but also the organizational culture in which care is delivered.
Nurses working in elderly persons’ care settings described a range of issues faced when
caring for elderly terminally ill people, which illustrated the different needs of patients,
relatives, professionals and society. These issues related to the unique needs of elderly
people (such as dementia sufferers) and could have an impact on patients’ quality of
death.
Background
Changes in health care have raised many ethical dilemmas. In palliative care,
questions around the ethics of prolonging life, hastening death and disclosure
have come particularly to the fore as society in the UK has become older and
more multicultural.
Cultural influences on ethical decision making are well documented1,2 with
studies highlighting different philosophies in different countries around issues
such as disclosure, consent and treatment decisions.3–7
A group of researchers carried out comparative questionnaire surveys of nurses
from Japan and North America6,8–11 on their experiences of ethical issues, partic-
ularly disclosure. Disclosure of information about a ‘serious’ diagnosis or prog-
nosis to patients in Japan was not the norm, while North American nurses had
the opposite experience. The main difference between these groups was the
Japanese emphasis on the importance of the ‘family bond’ and the North
American emphasis on the ‘right to know’.8,9 As a way of understanding how
nurses from different countries experience ethical issues we were asked to carry
Nursing Ethics 2004 11 (2) © 2004 Arnold 10.1191/0969733004ne680oa
Address for correspondence: Kay de Vries, Education Department, Princess Alice Hospice, West
End Lane, Esher, Surrey KT10 8NA, UK. E-mail: kaydevries@princess-alice-hospice.org.uk
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Ethical issues in caring for elderly terminally ill patients 151
Nursing Ethics 2004 11 (2)
out a study of a sample of nurses in the UK using the questionnaire developed
by Davis and Konishi in 1998. Because of our palliative care background and par-
ticular interest in elderly people, we chose to explore the views of nurses working
in elderly persons’ care settings.
There is already some evidence that patients’ age influences the ways in which
nurses address ethical issues. May’s study of nurses’ experiences around disclo-
sure of terminal prognoses in the hospital setting demonstrated how, although
nurses preferred openness, they believed that certain patients should not be given
information. This was particularly the case for very elderly or confused patients
because of doubts about their ability to comprehend or retain information.12 This
type of belief was also evident in Costello’s ethnographic study of three hospital
wards for the care of elderly people, where it was described as exhibiting ‘insti-
tutionalized nondisclosure’ of information about death and dying. There was a
cultural characteristic of families being given information that was withheld from
the patients themselves.13
The ageing population, the increasing incidence of dementia and the greater
number of nursing homes are likely to have a significant impact on palliative
care.14 However, as hospices move more towards shorter-term ‘acute’ palliative
care, many patients are transferred to nursing homes to die,15 creating greater
overlap between hospice and nursing home services. Yet, little is known about
the experiences of nurses caring for elderly terminally ill people in these settings
and it is important to explore their views on the ethical issues they may face. The
aims of this study were therefore:
To examine nurses’ experiences of disclosure in elderly persons’ care settings;
To determine other ethical issues that nurses experience when caring for
elderly terminally ill patients in these settings;
To examine these ethical issues with respect to the palliative care needs of
elderly terminally ill people.
Method
The researchers visited elderly persons’ care units where consent to carry out the
study had been obtained between February and April 2002 to give a short pre-
sentation, introducing the study to the nursing team. It was hoped that contact
with the teams would help to increase the response rate.16 Although the original
studies accessed nurses through conferences, the researchers believed that the best
way to reach a more representative sample of nurses in these settings was directly
through their place of work. This meant a smaller sample, but one more likely to
reflect the views of nurses who provide hands-on care.
A convenience sample of 135 registered nurses working in 13 elderly persons’
care units (three community hospitals and 10 care homes) in southeast England
was used. One questionnaire was provided for each member of each nursing team
so that they could complete them anonymously at a convenient time. The ques-
tionnaires were semistructured, containing a range of closed, forced-choice and
open questions that centred on nurses’ work with dying patients. The closed ques-
tions were specifically about disclosure but open questions enabled participants
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Nursing Ethics 2004 11 (2)
to write about other ethical issues related to their own work with terminally ill
people and to the care of dying people in the UK in general. In view of the range
of cultures represented by our sample, participants were asked to complete their
questionnaires with reference only to working in the UK.
In order to maximize the response rate a self-addressed return envelope was
provided with each questionnaire, together with an explanatory letter.16 A poster
outlining the presentation was also left at each unit for those nurses who
could not attend. The matrons/managers of those units from which fewer than
50% of the questionnaires were returned were sent a letter asking them to remind
the team to complete and return their questionnaires if they still wanted to
participate.
In view of the small sample size only descriptive information was used for
quantitative data. Qualitative data from the open questions were content
analysed.
Results
Fifty-three nurses returned completed questionnaires, giving a response rate of
39.3%. The demographic details of those who took part can be seen in Table 1.
Most of them worked in a clinical capacity (77.4%) and the time in their current
position ranged from four months to 22 years.
Care of terminally ill patients
All participants had some experience of nursing terminally ill patients. However,
a quarter (n= 13; 24.5%) stated that they were ‘seldom’ involved in ethical issues
at work, generally because they thought that there were not many ethical
problems.
The nurses were asked to state the types of ethical problems they encountered
in their work. As Table 2 illustrates, problems centred on treatment issues, the
use of life-prolonging treatments and the dilemma of balancing patient and family
wishes.
Disclosure
The majority of these nurses believed that most patients are told their diagnosis
and prognosis (n= 45; 84.9%), even in the case of terminal illness (n= 43; 81.1%).
However, around a fifth indicated that such information was given to families
only (n= 12; 22.6%). Decisions around disclosure were most commonly made by
the doctor. The decision to disclose a serious prognosis, for example, was made
by the doctor either alone (n= 24; 45.3%) or with the family (n= 23; 43.4%). Nurses
were rarely involved in these decisions.
Questions about truth telling revealed that most of these nurses thought that
professionals sometimes lie to patients. They believed that nurses (n= 34; 64.2%)
and doctors (n= 22; 41.5%) sometimes lie to patients about their condition
although fewer thought that this happened with relatives (17% and 24.5% respec-
tively). Thirty-two per cent (n= 17) indicated a belief that it may be ethical to tell
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the truth to families but lie to patients. Most nurses (n= 48; 90.6%) believed that
patients know when they are dying, even if they are not told.
The majority of the sample indicated that they themselves would want to be
told if they had a serious diagnosis (n= 51; 96.2%) or for a family member to be
told (n= 48; 90.6%). The participants were asked to explain the reasons for their
beliefs, from which five themes emerged:
The human right to know
The nurses described how being told the truth about a diagnosis was ‘fair’ and
‘a right’: ‘We must respect patients’ rights. I do believe that every individual is
entitled to know; in that case we are not taking their rights away from them.’
They mentioned this ‘right to know’ more frequently when writing in reference
to relatives (n= 14; 26.4%) than to themselves (n= 5; 9.4%).
Table 1 Demographic details of sample
n(%)
Gender:
Female 48 (90.6)
Male 5 (9.4)
Age (years):
£35 3 (5.7)
36–45 17 (32.1)
46–55 19 (35.8)
56–65 14 (26.4)
Place of birth:
UK 35 (66)
Ireland 1 (1.9)
Europe other 1 (1.9)
Africa 10 (18.9)
Asia 5 (9.4)
USA 1 (1.9)
Length of experience in nursing (years):
£10 2 (3.8)
11–20 17 (32.1)
21–30 20 (37.7)
<30 14 (26.4)
Education:
RGN/SEN 37 (69.8)
RMN 3 (5.7)
Diplomaa5 (9.4)
BSc/BAa6 (11.3)
Higher degree 2 (3.8)
aIncludes some non-nursing subjects
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Preparation
The most common theme from the data was that of preparation. The nurses
emphasized the importance of individuals being able to prepare for the future or
for death. Preparation for death could take the form of practicalities such as
finances, wills or funeral arrangements: ‘Planning ahead, winding up finances,
being in control of the funeral etc. would be important to me.’
When writing about their own death, preparation also meant preparing signif-
icant others and achieving closure or spiritual and traditional preparations: ‘To
enjoy the remaining time on earth with the family and friends and to prepare
spiritually to meet God.’
The nurses wrote about the importance of preparation much more often when
writing about themselves (n= 32; 60.4%) than about their relatives (n= 20; 37.7%).
Table 2 Common ethical problems
n(%)a
Treatment issues: 12 (22.6)
Medication (compliance/adequate analgesia for patient need)
Life-prolonging treatment for elderly/sick/dying patients
Living wills
Percutaneous enterogastrostomy feeding
Resuscitation
Placement/environment issues: 4 (7.6)
Hospital (acute treatment) versus nursing home care
Deciding best place of care for confused elderly patients
Family issues: 7 (13.2)
Relatives can have unrealistic expectations of treatment available
in nursing homes
Relatives’ expectations of the treatment that patients should
undergo can be unrealistic
Family versus patient’s best interest
Professional issues: 6 (11.3)
Communication within the team
Conflict over management of patient care, treatment or medication
Poor GP knowledge of symptom control
Patient issues: 5 (9.4)
Right to die
Choice/autonomy
Need for advocacy
Inability to make decisions
an= 32 nurses responded to this question (some nurses gave more than 1
response); percentages calculated using whole sample (n= 53)
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Living well
A third reason why the nurses believed in disclosure was the concept of ‘living
well’, which was important for themselves (n= 24; 45.3%) and for their relatives
(n= 11; 20.8%). The nurses wrote of the importance of knowing about a serious
illness in order to try to overcome it: ‘. . . so that I could discuss treatment and
decide how to live. Also to possibly investigate alternative therapies.’
They also described the importance of making the most of the time that is left,
for example, doing things they had never managed to do, focusing on the impor-
tant things in life or finishing unfinished business: ‘I might feel depressed/sad
but I can make the most of my time left to do or change what I didn’t do before.’
Relationships
A number of statements centred on the nurses’ belief that a serious diagnosis
should be disclosed to maintain and enhance relationships (18.9% when
writing about their relatives’ needs, 28.3% about their own). They wrote
of the need to have open communication in order to be able to talk freely about
treatment options as well as to promote trust and avoid deception: ‘If informa-
tion is withheld from any member of a family, this can lead to a breakdown of
‘free’ and relaxed communication, which is essential when someone is terminally
ill.’
The nurses also described how disclosure gave the opportunity to say impor-
tant things to loved ones before death and to concentrate the remaining time on
relationships: ‘To prepare them for what lies ahead, to allow them time to reflect,
to have last wishes granted and to say to them things that perhaps have been left
unsaid.’
Control and autonomy
The final emergent theme was that of control and autonomy (n= 21; 39.6% for
themselves and n= 14; 26.4% for their relatives). These nurses believed that
knowing about a serious diagnosis gives people a sense of control: ‘I believe that
knowledge can alleviate fear.’
Disclosure was also stated to be important if people were to feel in control over
their decisions, plans and choices:
It enables a person to understand what is happening to them and its importance. It
enables them to readjust their lifestyle and future plans and to come to terms with
changes that may come, before they happen, and seek support.
Current areas of ethical difficulty
Open questions gave the nurses the opportunity to identify ethical problems, as
they perceived them. Four themes emerged from their responses (n= 20):
Quality of death
The most prominent theme was quality of death (n= 19). The nurses wrote of dif-
ficulties in deciding on the appropriateness of life-prolonging measures such as
resuscitation and artificial feeding, as well as knowing when to stop treatment:
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Many elderly patients are PEG [percutaneous enterogastrostomy] fed when there is no
QOL [quality of life] which I think is a tragedy. People should be able to die with
dignity. It is a huge subject that needs a lot of debate.
Some nurses mentioned euthanasia, mostly in general terms as an issue for
debate. They also wrote about the way in which people die. They commented on
poor symptom control and noted that poor resources or knowledge can mean that
patients do not always die ‘well’:
When families are not present, dying patients do not get a carer to sit with them ‘til
they pass away because of the shortage of staff. This is very sad.
Pain relief is often still too little too late. People with terminal illness still die in pain.
Hospices are good at this aspect. Nursing homes
are not, as it is only a GP’s decision;
many elderly people die in pain, especially those without relatives to fuss about their
condition.
In addition, there were problems associated with decision making, particularly
for elderly patients suffering from confusion or dementia. There were problems
not only in making decisions about treatment and quality of life issues but also
in determining who should make such decisions:
If the patient has a mental health problem and is unable to express himself or herself
the relatives are relied on for guidance. However, if there are no relatives it is prob-
lematic. At what point should active treatment be stopped for a dementia sufferer? Who
decides how good their QOL [quality of life] is, and should major decisions like this
be made on their behalf?
This is linked to the question of disclosure. Three nurses wrote of the difficul-
ties associated with disclosing information to elderly patients with dementia, for
example:
While information should be, and I think usually is, given to residents and their
families, there are situations where this is not applicable, e.g. a very confused resident
who has dementia and would not be able to understand. Reality about condition and
prognosis would be incomprehensible to such a person and this would create further
confusion and distress.
Professionals’ needs
A small number of nurses (n= 5) described ethical scenarios depicting profes-
sional problems. These focused on professionals’ need for more knowledge:
Often GPs want subcut[aneous] fluids put up, which cause ‘chestiness’. Recently I
nursed a dying man with subcut[aneous] fluids which caused him a ‘bubbly’ chest, and
the GP then prescribed IM [intramuscular] antibiotics for his chest. This would never
happen at the hospice and is distressing to the nurse and sends out the wrong message
to the family. He was also very distressed and this problem was not addressed. This is
just one example of many. I feel that nurses are much more up to date and up front
about the care of dying patients than GPs. Many of our doctors have very dated and
poor attitudes.
In addition there were issues about the emotional needs associated with caring
for dying people: ‘Doctors feel they are failing their patients when they cannot
‘‘save’’ them . . . but some of my most rewarding nursing was when caring for
terminally ill people.’
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Relatives’ needs
Conflict between patients’ and relatives’ needs was also highlighted by a small
number of nurses (n= 3). This conflict was associated either with disclosure or
with relatives’ difficulties in accepting that the patient is dying:
Withholding information from patients because the family wants this done is a diffi-
cult issue when nurses are trying to build up good relationships of trust. However, if
a patient asks a direct question then they have the right to an honest answer that also
gives hope of quality of remaining life, adequate symptom control and a ‘good death’,
and this approach needs to be explained to families.
The greatest problem we experience is with relatives of an elderly person who do not
want to accept that their relative is dying. They often request that invasive procedures
are carried out in the hope of a ‘miracle’ cure.
Society’s needs
Finally, two nurses in the survey described ethical problems in terms of society’s
needs. These were associated with the medicalization of death and its taboo
nature: ‘ “Dying” is not seen as part of “life” any more but a more clinical and
hospitalized procedure.’
No ethical problems
Thus, ethical problems as perceived by this group of nurses working in care of
elderly persons settings in the UK reflect the different needs of society, profes-
sionals and service users. However, some did not think that there were any ethical
problems and, indeed, some emphasized the positive side of how ethical scenar-
ios could be managed in these settings:
There are very few problems with nursing elderly people when they are terminally ill.
Decisions regarding management are made with the GP, the family, the resident (when
able) and nursing staff. Very few residents would want to leave the home at this stage
to go to a hospice or anywhere else.
Discussion
The original questionnaire has been used internationally in comparative studies
of nurses’ experiences of ethical situations in a range of clinical and nonclinical
areas. Our sample was purely from the elderly persons’ care setting within a small
area of the UK and therefore cannot be truly compared with these samples.
However, this study does raise some interesting points about nursing elderly ter-
minally ill people in this country.
Disclosure in different cultures
Differences in cultural, traditional and religious beliefs can have a profound influ-
ence on how ethical questions are managed. In Japan, for example, the individ-
ual is viewed as ‘socially embedded’2so that groups (in particular the family)
make decisions rather than the individual. This contrasts with a western emphasis
on autonomy and the litigation-consciousness of US culture, which may influence
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decisions concerning ethical issues such as disclosure of a terminal illness.17
Overall, our sample’s views came somewhere between the rather polarized posi-
tions of nurses in Japan and North America.8–11
The majority of the nurses in our sample believed that, even if they are not
told, patients usually know they are dying. In the context of a multicultural society
such as the UK the ideal of ‘open awareness’18 may not always be possible or
appropriate. Field and Copp19 describe a shift in the UK from closed awareness
to open awareness and back to ‘conditional openness’ as disclosure has become
more of a process that takes account of patients’ changing emotional needs at dif-
ferent stages of their illness. In addition, open awareness may conflict with the
traditions and beliefs of cultural groups.20 It is important to understand, respect
and work with different traditions and be aware of the influence that cultures
may have on each other and how they may alter over time. In contrast with other
countries such as Japan, the UK nursing workforce is multicultural and therefore
nurses’ perceptions of ethical issues may be influenced by those cultures from
which they originate, live and work.
Disclosure and truth telling in the elderly persons’ care setting
In elderly persons’ care settings such as nursing or residential homes, disclosure
issues may be less commonplace than in other more acute settings, as was indi-
cated by the responses of nurses in this study. Nevertheless, if disclosure did
become an issue it was sometimes made even more challenging because of the
unique needs of this patient group, such as those of people suffering from
dementia. The repeated disclosure of bad news to those who are unable to retain
information, or to those with a limited capacity to comprehend, was highlighted
in May’s study12 as a potential source of stress for nurses and as an influence on
decisions over whether or not to disclose a terminal diagnosis in the hospital
setting. This may explain why some respondents in our sample revealed that lying
may be a feature of caring for people with ‘serious’ diagnoses and prognoses.
This mirrors both Japanese and North American nurses’ experiences, although
lying was more common in Japan.9While lying can undermine trust, it may be
morally acceptable to avoid disclosing the entire truth.21,22 In this study some par-
ticipants stated that professionals would in some cases be ‘economical with the
truth’. Nondisclosure and truth telling centre on attempts to do good and avoid
harm,23 but what constitutes ‘good’ or ‘harm’ and how different harms are
weighed up against each other may be perceived differently by individual people
or cultures. Japan may place more emphasis on preventing the harm of negative
emotion associated with truth telling, while North America may be more con-
cerned with preventing social isolation from nondisclosure.17 Similarly, harms
within the culture of an elderly persons’ care home may be perceived differently
when compared with more acute care settings.
Conflict of needs in ethical decision making
Although the majority of Japanese nurses would have wanted to be told if they
had a serious diagnosis (92.7%) a smaller proportion would want such informa-
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tion revealed to a family member (62.4%). The North American group was unan-
imous in wanting open disclosure in both scenarios.8,9 Our sample reflected the
North American standpoint and their reasons for disclosure illustrate the complex
multiple needs of people who may be facing death: the need to know, to prepare,
to live well, to have relationships and to have control. These are human needs
and the fact that the themes that emerged in our study were also reflected to some
degree in the original studies9implies that they may be shared across cultures.
The difference may be what is stressed as most important. In Japan the theme of
‘family bond’ (‘relationship’) was very much emphasized, while the North
American nurses stressed the ‘human right’ to know.8Nevertheless, across all
three cultures the greatest emphasis was placed upon the need to prepare for
death and for control over decisions.
Most of the nurses in our sample stated that they would want to know about
their own diagnosis and similarly for those close to them. The most commonly
stated reason they gave for wanting to be told themselves was to ‘prepare’,
although they placed less emphasis on dying patients’ needs to prepare, focusing
instead on their ‘rights’. Maguire et al.’s study24 of family attitudes towards dis-
closure of a diagnosis of Alzheimer ’s disease illustrates the discrepancy between
what individuals want for themselves and for others. Eighty-three per cent of the
family members of patients with Alzheimer’s disease said that patients should
not be told their diagnosis, but 71% would want to be told themselves should
they develop the disease. The participants believed they had a right to know (36%)
but did not seem to apply this in the same way to the patients (5%).24 Although
the nurses in our study generally expressed similarities between what they
wanted for themselves and for their families and patients, a small number had
reservations, illustrating some element of inconsistency in what may be consid-
ered as ethical.
The wish to prevent disclosure of potentially distressing information reflects
human needs, the need to protect others from upset, to protect ourselves from
emotional pain, or to maintain some sense of control. These needs are also impor-
tant for patients. One study of patients with cancer showed that they clearly did
not want their families to influence the information they received.25 Although
they approved of open disclosure, these patients emphasized the need for their
views to take precedence over those of their families. Thus there is a need to
balance patients’ need to know, relatives’ need to protect, and the medical need
to act in a model of openness.20
Quality of death and dying in the elderly persons’ care setting
Medicalization of death
The main sources of ethical difficulty represented by the sample of nurses centred
not so much on disclosure but on some of the struggles that exist in UK health
care and society. Conflicts were associated with the difficulties that relatives can
have in ‘letting go’ and the medicalization of death, which can affect patients’
quality of death through the use of inappropriate treatments, transfer to hospital,
or the use of ‘life-prolonging’ measures. A number of nurses described interven-
tions such as artificial feeding as an ‘inappropriate’ or ethically questionable
decision for elderly people who are terminally ill.
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The ethical difficulties described in Japan and North America did have some
contrasts.11 In Japan the main problems related to disclosure, the question of who
makes decisions about treatment, staff shortages, the inappropriateness and heroic
nature of treatment, and a lack of choice regarding the place of death. In North
America the question of who makes decisions was also raised but there were addi-
tional issues of euthanasia, organ donation, advance directives and the question
of deciding when to stop treatment.11
Challenge and conflict in decision making
Elderly patients who are very ill or have dementia may be unable to make
informed decisions about their care; these may therefore fall to their relatives or
professional carers. How to make decisions about another person’s treatment
when that person is unable to decide for himself or herself remains an area of
ethical difficulty. Families may be asked to make substituted judgements as a way
of protecting patients’ autonomy but such decision making may be open to abuse
and is subject to a range of problems.26 Surrogate decision makers are better at
predicting patients’ wishes for more invasive procedures,27 which may have
implications for those in elderly persons’ care settings who have to make deci-
sions about less invasive treatments such as the use of antibiotics. In addition,
although surrogates may aim to make decisions that reflect the patient’s ‘self’,
this may be made more difficult in the case of dementia when the patient’s ‘self’
may be altered by the condition.28
There may also be challenges for health care professionals. Norberg et al.29
examined the different ways in which professional groups caring for older
patients address such decisions. Doctors were concerned with fairness and
appropriate levels of care, while registered nurses placed more emphasis on
patients’ quality of life. The nurses in our study indicated how such decisions in
the elderly persons’ care setting remain a struggle, not only because of the
question of how such decisions are made, but also because decisions were
often perceived as ‘wrong’. Incidents involving artificial feeding, transferring
patients to hospital for active treatment, or the use of antibiotics were all cited
as examples where nurses did not always agree with their medical colleagues’
decisions.
Conflict and the nurse–doctor relationship has been illustrated in studies in dif-
ferent settings.8,13,29,30 With ethical questions, conflict may arise because of the
professional hierarchy and the different perspectives that doctors and nurses have
of their roles,17,30 and there are sometimes power relationship difficulties when
deciding on symptom management, disclosure and resuscitation.13 Nurses often
believe that they have a minor role in decision making when caring for termi-
nally ill people in hospital,3,12,13 yet they do not always openly challenge medical
decisions.13 If there is to be more effective discourse regarding ethical issues across
disciplines,30 nurses may need to place more emphasis on their role as advocates
for terminally ill elderly patients, if necessary challenging decisions they believe
to be detrimental to their holistic care. A greater emphasis on the multiprofes-
sional team, as illustrated in the palliative care approach,31 may mean that ethical
decisions are determined by patient need and the ethos of care rather than by the
professional stance of any single group. Lloyd-Williams and Payne,32 for example,
demonstrated how multiprofessional guidelines could improve palliative care in
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a long-term psychogeriatric setting, aiding decision making when there was an
ethical dimension to a patient’s problem.
Ethical palliative care for elderly terminally ill people
It is interesting that our sample described poor symptom control as an ethical
problem when caring for elderly terminally ill people. Nurses described how poor
levels of education in symptom control (largely attributed to GPs) and commu-
nication skills, as well as low staffing levels could impact on patients’ quality of
death and consequently the ethical provision of care. The importance of incorpo-
rating the palliative care approach when caring for terminally ill patients in
hospital has been well documented,33 but there is also a recognized need for a
better understanding of these principles by those caring for elderly people, by
means of education, support and resources,34–37 including GPs who provide
medical cover for nursing and residential homes.15,35 Contact with specialist pal-
liative care teams can help staff working in these settings to become more aware
of the contribution that symptom control and emotional support make.37
However, although many palliative care teams do work at elderly persons’ care
homes their involvement is often infrequent, reactive and minor in terms of edu-
cation and training,38 and there is a need for more formal educational initiatives.
Froggatt36 has demonstrated how one education package tailored to the needs of
nursing homes had a positive impact on the care of residents, particularly on
pain control and communication, which were two areas cited by our sample as
being poor at times yet having a significant effect on the quality of a person’s
death.
In addition to education, improving palliative care in nursing homes requires
a better understanding of the culture of care found in these settings.15 The needs
of elderly terminally ill people may differ from the current palliative care popu-
lation.36,39–41 Only a small proportion of residents die of cancer,42 yet specialist
teams covering these settings care primarily for people with malignant disease38
and so patients with other conditions such as end-stage dementia can have unmet
needs for symptom control.32,35 The provision of ethically adequate palliative care
to this patient population may therefore require expertise in the needs of people
dying of diseases other than cancer, of people experiencing dementia-type con-
ditions, and of elderly people of a ‘certain generation’ with its own specific
culture. Perhaps there is a need for a cultural change. Taking account of the exper-
tise they already have,15 elderly persons’ care units need to take a more active
role in recognizing the palliative care needs of those in their care and work more
collaboratively with other specialists in the palliative care of elderly people.36
Limitations of the study
Although the questionnaire has been used in other studies, it is not a validated
tool. It was designed originally for Japanese nurses, a group likely to represent a
single culture. Therefore, although it has been used in countries such as North
America, its applicability to a multicultural sample is unclear. The questionnaire’s
focus on disclosure may mean that broader ethical issues were not explored in
enough detail. However, many of the nurses did respond to open questions about
at UNIVERSITY OF BRIGHTON on August 27, 2015nej.sagepub.comDownloaded from
other ethical issues, often writing extensively. In addition, the fact that the
researchers were based in a palliative care setting and intended to explore ethical
issues from this standpoint may have had some influence on the nurses’ responses
and increased their focus on palliative care issues.
Conclusion
Although it is difficult to draw conclusions from this small study in a single area
of the UK, it does raise some issues. The cultural influences that come into play
in ethical decision making may not relate simply to ethnicity but also to the pre-
vailing professional and organizational cultures where care is delivered. These
nurses described a range of ethical questions faced by UK society, many of which
can affect the quality of a person’s death. Some nurses questioned the ethics of
poor symptom control for elderly terminally ill people. Although some stressed
that the palliative care provided in their setting was of a good standard, others
indicated some room for improvement. Elderly patients dying in these settings,
like any other patient group, deserve quality palliative care. These organizations,
as well as providers of specialist palliative care, therefore have an ethical obliga-
tion to work increasingly towards achieving this.
Recommendations
Nurses working in these settings face a number of ethical dilemmas when
caring for elderly terminally ill people and may benefit from more support
from outside agencies, including specialist palliative care teams.
As other authors have emphasized, there continues to be a need for education
on the principles of palliative care for both doctors and nurses caring for
elderly terminally ill patients in these settings.
Nurses as a group may need to do more to raise their profile as patient advo-
cates, particularly when caring for such vulnerable groups.
Further research into the perceptions of groups such as care assistants (who
often have the most contact with patients37) and GPs would improve under-
standing of the roles and experiences of different professional groups in ethical
decision making in this type of setting.
S Patricia D Enes and Kay de Vries, Princess Alice Hospice, Esher, Surrey, UK.
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