Research

Community nurses perceptions of

a good death: a qualitative
exploratory study
Chloe Griggs

Abstract

Aims: This study sought to gain an insight into perceptions of a good

death among community nurses, and to identify its central components.
By understanding these factors, it was hoped that common difficulties
could be identified, enabling recommendations to be made to enhance
patient care and reduce the pressures to which nurses are exposed.
Method and sample: This qualitative exploratory study relied on semistructured interviews, incorporating the critical incident technique to
elicit retrospective accounts of experiences of palliative care and a good
death. Data was obtained from a purposive sample of 17 community
nurses, working in a single primary care trust in south-east England.
Results: The participants identified eight key themes in supporting a
good death: symptom control, patient choice, honesty, spirituality,
interprofessional relationships, effective preparation and organization
and provision of seamless care. When these are in place, a good death is
possible. Factors such as lack of necessary medication/resources,
unsuccessful interprofessional relationships and lack of teamwork were
significant determinants of less successful care. The provision of
seamless care was an important criterion for success. Conclusions: In
identifying the contributory factors, this study has shown that a good
death can be provided in the community, although it has also revealed
many challenges associated with such care. While it could be argued
that due to the unpredictability of death, such challenges may always be
a threat to effective care anticipatory planning and a recognition that
patients need and are entitled to specialist care many of these difficulties
could be overcome.
Key words: Palliative care l Good death l Community Nurses
l End-of-life care

T
Chloe Griggs is Senior
Lecturer in adult nursing, department of nursing and applied clinical
studies, Canterbury
Christ Church
University, Canterbury,
Kent, United Kingdom
Correspondence:
chloe.griggs@canterbury.ac.uk

139

he concept of a good death has evoked

much attention in recent years, in part
owing to government pressures to
improve end-of-life care services (National
Council for Palliative Care (NCPC), 2006), to
provide people approaching the end of life with
more choice about where they would like to live
and die (Department of Health (DH), 2008),
and to promote a good death. Though there is a
lack of consensus of what a good death is
(Ardelt, 2003; Chikako, 2004) this is generally
perceived to be one in which terminally ill individuals actively participate in decisions around

how, when, and where they choose to die (Kehl,

2006). As health care in general moves from the
acute sector into primary care, attention has
turned to how a good death can be delivered in
the community. Evidence suggests that this is
difficult as staff face logistical, inter-professional
and financial restraints (Costello, 2004).
Traditional hospice environments have long
sought to pave the way in end-of-life care
(Masson, 2002) through holistic care encompassing all the essential components of a good
death (Clark and Seymour, 1999) (Table 1). This
is based on a philosophy of care that offers
excellence within the field of end-of-life care
(Johnston, 1999). This incorporates palliative
measures directed towards improving the quality of dying, such as symptom control, choice
and dignity.
Recognition of limited hospice resources has,
however, stimulated health authorities to
attempt to transfer the hospice model of care
into other settings such as hospitals, care homes
and the community through programmes such
as Hospice at Home (www.hospiceathome.org.
uk). Documents such as the End of Life Care
Strategy (DH, 2006) support such movements
(NCPC, 2006), the aim being to transfer best
practice into other settings and enable all terminally ill patients across the health-care spectrum
to access and receive the same standard of care
(Ellershaw et al, 2001). This has been a major
challenge for health professionals who must not
only transfer best practice into community settings, where facilities are limited, but also
include non-cancer patients (Jack et al, 2003).
Despite the many advances made in community end-of-life care, Shipman et al (2003) question the current quality and consistency of care;
significant variations in availability and access
to end-of-life care are evident (DH, 2003).
Costello (2004) for example, highlights difficulties in primary care out-of-hours services, suggesting that lack of continuity arises because
staff are often poorly informed and equipped to
deal with end-of-life care, while King et al

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Research

(2005) document serious problems regarding

symptom control and communication with
many patients dying a distressing death owing
to miscommunication or lack of planning. Such
downfalls may have a significant impact on the
dying patient.
For many people death occurs at the end of a
long disease process; it is usually expected
with both patient and family aware of the prognosis. This does not, however, make death any
less traumatic (Riley and Ross, 2005) and it is
the role of the health professional to minimize
trauma and distress. Uncontrolled symptoms
and distress at the end-of-life may leave a permanent psychological imprint upon those who
witness it, since patients who suffer at the endof-life do not suffer in solitude (White et al,
2004), any person present is drawn in and suffers alongside them. This may include health
professionals. Therefore, when things go wrong
at the end-of-life, nursing staff and family members may experience feelings of helplessness,
frustration, stress and anger (Glasberg et al,
2007). Since the very essence of nursing is to
relieve suffering (Beauchamp and Childress,
2001), witnessing unrelieved symptoms can be
traumatic and result in low morale and feelings
of inadequacy. If such situations are recurrent,
this may result in a burnt-out workforce, leading to stress-related sickness or serious clinical
errors (Glasberg et al, 2007).
This exploratory qualitative study sought to
gain an insight into perceptions of a good death
from a growing provider of end-of-life care, the
community nurse, who often assumes the role of
assessor, provider and coordinator of care
(Shipman et al, 2005). The purpose was to
understand their perceptions of a good death
and, from this, identify the important components of end-of-life care in the community. It
was believed that, by understanding these factors it may be possible to identify common difficulties and make recommendations that would
both enhance patient care and reduce the pressures to which nurses are exposed.

Method
This was a qualitative study designed to explore
community nurses perceptions of a good death
and identify its components from their perspective.
The approach adopted offered a practical, feasible
and ethically sensitive method of data collection
through a systematic process of gaining plausible
and credible accounts of their experiences
(Ingleton and Seymour, 2001).
Semi-structured interviews, incorporating the
critical incident technique, were employed to

International Journal of Palliative Nursing 2010, Vol 16, No 3

Table 1. Components of a good death

Being in control
Being comfortable: pain and symptom management
Sense of closure
Trust in care providers
Honouring beliefs and values
Acknowledging/preparing for impending death
From: Debate of the Age Health and Case Study Group, 1999; Hales et al, 2008

elicit retrospective reports of experiences of endof-life care and a good death. By focusing on the
participants perception of an experience, and
taking into consideration things they heard, felt
and saw (Redfern and Norman, 1999), it was
hoped that meaning and relevance could be
extracted from their accounts. Participants were
first asked to describe their perception of a good
death then, using the critical incident technique
to discuss a situation they had been directly
involved in over the last 6months, the intention
being to reduce the likelihood of information
being omitted or forgotten.

Sample
In qualitative research, sampling relies on small
numbers with the aim of studying a topic in
depth and detail (Patton, 1990; Miles and
Huberman, 1994). The sampling approach is
determined by the methodology and topic under
study and the desire to investigate the topic fully
(Miles and Huberman, 1994). Seeking a richness
of data about experiences of a good death, the
sample was derived purposefully rather than randomly (Mays and Pope, 1995; Ezzy, 2002).
Data was obtained from community nurses
working within a single primary care trust in the
south east of England which comprise urban,
semi-rural and rural areas. It was, therefore, a
purposive, quota sample designed to ensure an
appropriate distribution of relevant variables and
meet the aims of the study (Carter and
Henderson, 2005) (Table 2). All interviews were
conducted in private rooms in community clinics,
they were recorded and transcribed verbatim as
soon after the interview as possible, to ensure
that participants points were documented accurately (Denscombe, 2003). Approval was
obtained from the local research ethics committee
and ethical principles were observed, including
voluntariness, individual autonomy and anonymity. Written informed consent was obtained from
all participants before interview.

Data analysis
Interview transcripts were checked for errors
against the audiotape to ensure accurate and

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Research

{ Patient
choice was
regarded
highly and the
respondents
stressed the
importance of
respecting
patients
wishes |

authentic reproduction of participants accounts

and were then read and re-read to develop an
understanding of the content and complexity of
the meanings ascribed to nurses experiences of
a good death.
Thematic analysis allowed significant issues
and central themes to emerge, which was
important in capturing the nurses experience.
This inductive approach, led by themes and
ideas, allowed the data to speak for itself,
grounding the findings in the data. It is particularly useful when the topic under investigation is
complex and where the concern lies in understanding, rather than measuring, outcomes. The
analytical process therefore allowed themes to
emerge by extracting commonly occurring material from each transcript and allocating relevant
quotes to the appropriate theme (Donovan and
Saunders, 2005). Themes were collated and connections made between them in an iterative
processenabling the meanings inherent in participants narratives to be elucidated; these are
reported here. Direct quotations are followed by
the participant number to illustrate a range of
the data obtained.

Findings
Seventeen nurses were interviewed, all were
actively involved in end-of-life care on a regular
basis and had a range of experience. The main
themes emerging from data are summarized in
Table 3. These fell into three general categories,
those that were patient-focused, those affecting
both nurse and patient, and finally, themes that
affected behind the scenes care.
The most significant and commonly occurring
component of a good death was effective symptom control.

Symptom control
Participants highlighted the importance of early
identification of symptoms and their subsequent
management, which according to nurses, should
be carried out in a prompt and timely manner in
order to maintain patients comfort and dignity.

The patient should be pain free and symptom

free. (12)
A good death is where the symptoms are managed proactively and not reactively, we are
looking at the whole person. (10)
We kept him pain free and comfortable at the
end and he died with dignity. (17)

Patient choice
Patient choice was regarded highly and the
respondents stressed the importance of respecting patients wishes as follows:
... care is led by the patient, it is the patients
choices and wishes. (17)
She was living in a residential home, she
wanted to stay there. Her needs had changed
and the home initially didnt want her to stay,
they were afraid, but we supported them and
pulled out all the stops to enable that lady to
remain in her home. (1)

They also emphasized the importance of supporting family members during this time, particularly when patients lose consciousness.
We must support the relatives and abide by
their wishes, because their wishes may not be
the same as yours. (5)

Honesty
Honesty at the end of life was integral to the
achievement of a good death; this appeared to
be important for nurses personally, and for the
patients they were caring for.
An openness to discuss what is happening to
them, where they want to be, what they want to
happen, so theres no secrets or difficulty. (11)

Although a highly subjective matter, with

some family members choosing to keep the diag-

Table 2. Inclusion and exclusion criteria

Inclusion criteria
Community nurses under agenda for change banding:
Band 3 Health Care Assistants, Band 5 Community
n Nurses, Band 6 Community Sisters, Band 7 District
n Nurse Team Leader
n Out-of-hours nurses
n General Practitioners
n All participants in current post for longer than
6 months
n GPs on the general practitioner register

141

Exclusion criteria
Participants in post for less than 6 months
Specialist palliative care nurses
n Macmillan nurses
n Marie Curie nurses
n Intermediate care team
n Hospice outreach team

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nosis/prognosis from the dying patient, most

nurses felt that openness and honesty at the end
of life were important contributors to a good
death. It was believed that those who were
aware of their diagnosis were better able to
come to terms psychologically with death, and
cope with their symptoms.
You can talk with patients who are prepared
more openly and they are more honest about
their symptoms. (5)

Nurses reported the feeling that patients who

were aware they were dying had made peace
with the world and with themselves. Honesty
with family members was felt to enhance relationships and enable everyone to communicate
effectively, for example:
The nurses worked closely with the family,
and the family were aware at every stage and
of all the possible things that could happen
and they took it on board. There were no surprises for them. (16)

Spirituality
Despite commentary on the major clinical
aspects of palliative care (e.g. symptom control),
there was a strong underlying theme of spirituality, with particular reference to peace:
A good death is where the patient has come
to terms with the fact that they are dying, they
are at peace with themselves. (12)

Most participants paid particular attention to

holism, with an emphasis on spirituality:
The patient dies with dignity. It is a peaceful
and dignified outcome. (7)
Wellbeing is essential, give them chance to
off-load their past experiences positive and
negative, its nice just to listen. (15)

Several nurses commented on the period after

death and their shared experiences with families
and loved ones at this emotional time. Many
found closure in staying at the patients home
for a short time after death, to support the family and to lay out the body.
At the end, we all hugged each other and it was
so lovely, the husband had never really spoken
much before and when he put his arms around
us we knew he was grateful. We left the house
feeling it was a really nice experience. (5)

International Journal of Palliative Nursing 2010, Vol 16, No 3

Table 3.Themes identified from the data

Themes

Contributory factors

Symptom control

Patient comfort dignity

Patient focused

Patient choice

Respect for patients

wishes, family support

Patient focused

Honesty
Openness coping ability

making peace

Nurse and
patient

Spirituality
Peace, holism, shared

experiences

Nurse and
patient

Interprofessional
relationships

Team working,
communication between
professionals

Nurse Focused

Communication

Face-to-face contact, lack

of formal handover

Team focus

Preparation and
organization

Prescribing practice,
availability of resources,
anticipatory planning

Nurse focused

Seamless care

Out-of-hours care GP
commitment

Patient, nurse
and team

I was able to kneel by the bedside and hold

his hand; my colleague put her arm around the
wife. We basically tried to bring them together
while this was happening. (8)
We laid the husband out together, got a rose
and made him look peaceful and nice. (15)

This seemed to be important not only to

nurses but also to patients and to their families,
and appeared to offer an important coping
mechanism.

Interprofessional relationships
Perhaps one of the most important aspects of
successful end-of-life care is the efficiency and
ability of health professionals to work together.
All of the services were working together. (11)

Health professionals involved in end-of-life

care acknowledged the importance of team
working.
Everyone is working together to ensure the
process runs smoothly. (1)

This was apparent from the onset of interviewing, when participants were asked to recall
an experience of end-of-life care:
No-one trying to pre-empt themselves, everyone working together. (11)

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{ Many found
closure in
staying at the
patients home
for a short
time after
death |

Similarly, though it was felt that a multi-professional input was beneficial, the team must
have shared goals and similar values. When this
was the case, patient care ran smoothly.
It was my first experience of excellent multidisciplinary liaison. The hospice team were
fantastic, so were the outreach team, the GP
and the district nurseI have so much admiration for hershe worked so hard to make everything go smoothly. (12)

Relationships with GPs were not always so successful, tending to reflect differences in the attitude
of the nurses.
Communication between nurses and GPs is
not friendly, its matter-of-fact, they are not
emotionally involved we are. (3)
Some get on their high horse and go to
extremes to disregard you completely. (11)

At other times, differences in approaches to

care or treatment were apparent.
They do not like being told anything about
which medication to give in or out of the
syringe driver, they blatantly seem to override
it or change something, which completely
undermines everything. (11)
Ive had a lot of them [GPs] say to me oh
well if they are in pain, they are dying, thats
to be accepted. Which isnt acceptable, but
thats their perception. (14)

The GP couldnt understand why the family

didnt want her admitted, so it became a battle
and this poor lady was in the middle of it, she
just wanted to die at home. (1)

Nurses also reported reluctance among GPs

to commit to a patient not known to them, in
particularresistance to prescribing opioid
medications.
You often get locums who just do it for the
money and they only work out of hours, they
dont belong to a practice and therefore they
dont have any training in palliative care. (12)
I have to communicate with GPs out of hours
who I dont knowthey dont know meits
very difficult, they are very reluctant to prescribe for patients they dont know. (7)

Nurses recognized the need for doctors and

nurses to work in partnership to develop a therapeutic relationship.
We need a better rapport with GPs in any
given situation. (2)

Communication
These difficulties were exacerbated by failures in
communication, for example:
Time and time again simple communication
fails. (4)

However, it appeared that a lack of GP commitment and involvement was a serious problem, creating some of the nurses main
challenges in the day-to-day delivery of palliative care.

This was particularly important between day

and out-of-hours staff, and often resulted in poor
patient care as staff were not being appropriately
informed of the patients situation and so were
unable to prepare adequately.

The biggest problem is getting a definite decision from the GP as to where the treatment of
this patient is going. (1)

We were contacted through the out-of-hours

service to change a wet pad and thats all the
information we were given, we were not aware
this lady was terminal or dying. (4)

The main challenge is the GPsgetting them

to sit down and talk about the patient and
decide what we are going to do. (9)

Additional difficulties were reported by those

nurses working evening and night shifts who
found this relationship particularly problematic.
We have this ongoing battle with the GPs who
work out of hours, I always ask who is work-

143

ing and my heart sank when ... it was this particular GP. (14)

A recurrent theme was the dissatisfaction with

the current means of handing over patient
details, which was achieved using an answer
machine, this caused some concern.
Youre speaking into the phone; you dont
know whether the tape is picking up what
youre saying or whether they pick up the message in time. (11)

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Research

This was found to be very impersonal and it

was often difficult to give the details needed to
prepare other staff adequately.
I find it very frustrating handing over loads of
personal information to an answer phone.
Talking to a real person would be handy. (13)

For this reason, day staff often found themselves staying late in the day in order to speak to
out-of-hours staff, or even phoning from home.
I will stay on late so I can actually speak to
them rather than leave a message. I like to add
a personal touch. (9)

Participants felt that a more structured handover period at the beginning and end of the day
would improve patient care.
The mobile is not a good way of handing
over; I think we need face-to-face contact at
some point. There has to be time allocated to
attend a handover period at a base that is
accessible to everyone across the locality. (8)
Perhaps we could handover to the twilights at
5pm any problems we have had during the
day, and vice versa, I think the night staff
should handover to us in the mornings. (13)

A formal handover would enable staff to be

kept informed and enhance patient care.
If they [out-of-hours staff] have a record you can
help keep them up to date on the situation. (9)
If the out-of-hours team are not aware it often
ends in a 999 call and admission which is very
unfortunate at the end stages. (2)

Preparation and organization

It was believed that the likelihood of a good
death was enhanced by the ability to prepare
for and organize care.
A good death is well prepared for, we have everything ready so there is no last minute rush. (11)
... care would be well organized around the
patient, everything is pre-thought and everyone knows whats going on. (9)

To some extent effective organization depended

on good communication, as indicated above, but
it also incorporated such things as the prescription and availability of necessary medication and

International Journal of Palliative Nursing 2010, Vol 16, No 3

access to resources.
There was, for example, evident discontent surrounding prescribing activity at the end of life.
Particular problems were highlighted regarding
the reliance of GPs on their nursing colleagues to
recommend palliative drugs.
I have had GPs hand me the prescription sheet
and ask me what I want. I know what I want but
Im not qualified to make that judgment. (11)

{ Staff found
that restricted
pharmacy
opening times
limited the
availability of
necessary
drugs |

I was asked to write up for them and the GP

just signed it because they didnt have a clue.
We shouldnt be put in that position (7)
GPs, you go to see them and youre virtually
telling them what dose to prescribe, its like you
are making the decisions and they are just signing the prescription. (3)

Alternatively, respondents described situations

in which GPs were reluctant to prescribe any
medication; this was exacerbated when the need
arose outside normal working hours. A significant lack of support and cooperation was
reported in which GPs were often reluctant to
visit patients or to prescribe anything stronger
than paracetamol.
... we were lucky we found a GP that would
prescribe ... as long as you know what you
want. But that is the problem if you are up
against a GP who doesnt know the person, and
then they are reluctant to prescribe. (4)

However, even when the prescription was

available, significant difficulties in accessing drugs
were evident, particularly out of hours when a
plethora of logistical problems occurred. In these
situations, staff found that restricted pharmacy
opening times limited the availability of necessary
drugs. Accessing an on-call pharmacist took too
long when a patient was experiencing distressing
symptoms; at times, the pharmacist could not be
contacted at all.
On-call pharmacists are a laugh! The number
of times we have tried to call the on-call pharmacist and thats a joke! We can never get hold
of him ... whoever it is. (14)
But, as usual we had trouble getting a pharmacist to open shop and provide the drugs. (4)

Not surprisingly therefore, there was an overwhelming call for better stocked chemists and
24-hour availability of drugs; the aim being to

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Research

{ Participants
expressed
satisfaction
when
discussing
situations
where the care
had been
almost
seamless |

improve patient care and prevent patients who

have distressing symptoms from having to wait.
We definitely need better access to drugs. (2)
We can plan ahead to a certain extent, but we
cant always get it right. (13)

There was a plea to enable nurses to:

have things ready, rather than having to
rush. To pre-empt what might happen is desirable, to have the drugs in the house. (16)
The most beneficial thing I found was having the
drugs in the home, to be able to administer when
you need to, instead of going through the out-ofhours service and having to wait for drugs. It was
well thought out and prepared for. (15)
We had three patients recently with motor-neurone disease who have had emergency boxes
which have been brilliant. (14)

In addition to the availability of drugs, experiences of palliative care were greatly influenced by
the availability of, and access to, other resources
which, in this context, referred to specialist
equipment such as syringe drivers, pressurerelieving mattresses, moving and handling equipment and commodes, for example, this was often
the most time-consuming and frustrating elements of behind the scenes care.
We also have problems with access to equipment. A lot of care is being referred to community staff and we dont have the resources to
back that up. We have accepted people home
from hospital to die at home in the past and we
have to accept that we dont have the correct
equipment. But we have to make do with what
we have available. (13)
I think access to syringe drivers at night is a
problem, I wouldnt know where to get one
from. (15)

On the other hand, quick and efficient access

to these items had a direct impact upon the
patient and positive outcomes.
I had time to get all the right equipment in at
the right time. (7)
I managed to get all the right equipment we
needed, the care package was in place, all the
necessary medication and help. (9)

145

Seamless care
Participants expressed satisfaction when discussing
situations where the care had been almost seamless, and patients had received 24-hour care and
support from the entire community nursing servicethis was an important criterion for success.
The evening nurses had been involved, the
palliative carers had been in a few times, wed
had Marie Curie and it just so happened that
the one we booked was the night he died, the
family were so thankful the nurse was there
and helped take control. The whole 24-hour
service was involved. (7)

Discussion
The importance of research and development in
end-of-life care is profound not only for
patients, but also for the workforce (White et al,
2004); when applied to practice, research findings can enhance knowledge and ultimately
improve patient care. This is particularly true as
the demand for end-of-life care in the community increases (Aoun and Kristjanson, 2005).
The qualitative approach adopted here focused
on understanding perspectives of a specific experience, in this case, of a good death. By using
the critical incident technique, respondents were
able to focus on specific examples and provide
useful insights into the way they experienced the
situation. By identifying the strengths and weaknesses in the current situation, it may be possible to build on the strengths and address the
weaknesses to enhance the care delivered to
patients and their families.
Each component that contributes to a good
death is, therefore, seen as essential, and may
influence the success with which this can be
achieved. Symptom control is key, but can be
problematic, often reflecting a lack of planning
and structure when things go wrong (Pooler et al,
2003). While frameworks such as the End of Life
Care Strategy (DH, 2008) and the Liverpool Care
Pathway (Ellershaw and Wilkinson, 2003) have
sought to reduce potential complications by
encouraging anticipatory planning and prescribing to address patients needs, the logistics of this
approach are not without their challenges.
For example, King et al (2003) highlighted the
problems in accessing either a prescriber or specialist advice when it is needed, as well as access
to specialist drugs. It is evident from these findings that such difficulties in providing patients
with such drugs persist, and reflect availability
of appropriate drugs, accessing a chemist that is
open, and transporting drugs. Consistent with
earlier findings, such organizational difficulties

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Research

are one of the most common problems associated with end-of-life care in the community
(Pooler et al, 2003). Not surprisingly, King et al
(2003) state that poorly structured out-of-hours
services may let down those patients wishing to
die at home.
With 75% of the week falling outside of normal working hours, access to drugs is variable
and fraught with difficulty (Pooler et al, 2003).
For this reason, Amass and Allen (2005) successfully piloted a just in case box whereby
patients in the terminal phase of illness were
prescribed an emergency supply of drugs, therefore reducing both the number of inappropriate
admissions to hospital and the number of GP
and nurse call outs. These findings suggest that
this approach has the potential to eliminate the
significant challenge of getting drugs when they
are needed; it may also save time and money
spent trying to access drugs out of hours and,
through this, enhance patient care. Similar difficulties are reflected in accessing equipment and
support and are amplified out of hours. Since
symptom control and preparation and organization are inextricably linked, such problems
require urgent consideration to ensure that all
patients receive the care they require in a timely
and appropriate fashion.
These issues appear to be exacerbated by concerns associated with interprofessional relationships, which may reflect misconceptions
surrounding professional roles and values. This
is not unusual and has been identified in a
number of areas of nursing research (OConnor
et al, 2006). It cannot be assumed that all members of an interdisciplinary team have the same
understanding of their roles and values; there
may be significant variations in attitudes in the
workplace. For example, OConnor et al (2006)
highlight potential tensions borne out of issues
of power and authority, while Hudson (2002),
in a study of community nurses and GPs, indicate that interprofessional relationships are
founded on deep-rooted social and cultural differences in which doctors are seen to be holding
the power and control.
Milligan et al (1999) have similarly shown
that interprofessional working may be impeded
by certain members of the team exerting authority and seeking recognition of power and knowledge while Healey et al (2004) discuss
professional rivalry between doctors and nurses;
it appears that doctors are less likely to engage
in equality and collaboration than their nursing
colleagues. Such historical hierarchies mean that
communication in health care can be challenging (OConnor et al, 2006).

International Journal of Palliative Nursing 2010, Vol 16, No 3

Involving the patient in making decisions

about their care is high on the UK governments
agenda and was supported by those included in
this study. Policies such as Building on the Best
(DH, 2003) have been a great success in this
area with patients being well informed and
involved in their care. In addition, the NHS End
of Life Care Programme (DH, 2006) outlined
guidance for patients and health professionals
on preferred place of care, offering patients the
opportunity to make choices about their care.
However, though the NCPC has shown that
56% of people wish to die at home, the reality
is that only 18.1% manage to do so, perhaps
indicating that patients needs are not being adequately met in the community (NCPC, 2006).
As shown here, this may, in part at least, reflect
the lack of appropriate end-of-life training and
education which, undoubtedly, affects attitudes
and goals.
Despite the increasing demand for care in the
community, only 60% of the nurses interviewed
here had received additional training in end-oflife care. This means that, despite their desire to
meet patients needs, acknowledge patient
choices and respect their wishes, nurses may not
always possess the skills and knowledge to do
this successfully. This is perhaps exacerbated by
the fact that GPs feel deskilled with regard to
the care provision and see specialists in palliative care as stealing their patients (Hanratty et
al, 2002). Ellershaw and Ward (2003), however,
suggest that health professionals may be reluctant to diagnose dying, as they have not been
trained to care for dying patients and therefore
feel helpless. They may also regard end-of-life
care as a therapeutic failure (Fallowfield et al,
2002) and so avoid making the transition from
curative care to palliation. It may be that, by
avoiding this decision, doctors believe that they
are protecting patients though the reality may
be very different. The nurses studied here
expressed the desire for clear decision-making
from GPs, to either continue with active treatment or commence palliative care: We also need
GPs to commit themselves and say: this is an
end-of-life issue, we treat them with respect and
dignity (participant 17). It is suggested that by
sharing their uncertainties with colleagues and
patients, patients and families may be able to
make important decisions and choices (Doyle
and Jeffrey, 2000). Nurses reported that patients
who were aware they were dying had made
peace with the world and themselves. This is
particularly important since being at peace was
a core feature of a good death (Masson, 2002),
where the patient has come to terms with the

{ Involving the
patient in
making
decisions
about their
care is high on
the UK
governments
agenda |

146

Research

{ The act of
attempting to
define a good
death may, in
itself, be
restricting care
delivery |

fact that they are dying, they are at peace with

themselves (participant 12). The participants
were clear that, for patients to be at peace, they
must first be aware of their diagnosis and realistic prognosis.
Similarly, although spirituality was a key
theme in the findings, participants emphasized
different aspects, indicating the subjective nature
of end-of-life care. Since nurses perceptions of a
good death are far from value-neutral, with each
participant drawing on previous experiences,
Masson (2002: 192) cautions us against ideologies of care, suggesting they can lead to prescriptive and normalised behaviours and
choices. The nurses here appeared to attempt to
meet the patients wishes.
Consistent with earlier research (Setch, 2001),
nurses appeared to find their rituals, such as laying out the body, a source of comfort after
deathfinding this a way of turning the sadness
of death into a positive experience, and making
one last gesture when someone has died. Though
Setch (2001) suggests that this offers individuals
a means of coping with death and stressful situations, such rituals must be applied with caution
to avoid placing personal values on others.

Conclusions
This study, in identifying the perceived components of a good death, has shown that it is possible to provide a good death in the community. It
has, however, also shown that there are many
challenges associated with the provision of endof-life care in this setting. It could be argued that
because of the unpredictability of death such
challenges may always be a threat to effective
anticipatory care planning, however, there is a
recognition that patients need and are entitled to
specialist care (Gray, 2006) through which many
of these issues could be overcome.
Though care pathways have been developed to
enable advanced planning and anticipation, it is
evident that there is a need for reliable out-ofhours services (Pooler et al, 2003) to ensure the
availability of drugs and resources as well as
appropriate nursing care. Since this covers 75%
of the week, failures in supply may have significant and detrimental effects on patients, and this
must be addressed.
Similarly, it is clear that it is time for interprofessional rivalry to become an issue of the past if
effective care is to be provided to both patients
and their families. We all have a responsibility to
respect and listen to our colleagues and peers,
through the art of negotiation, diplomacy and
tact a mutual agreement can be reached. The key
element to remember is the decision should be in

147

the best interests of the patient and not reflective

of personal agendas or egos. Though hierarchy
within nursing and medicine is necessary to a
degree, when it jeopardizes the quality of patient
care it undermines the essence of end-of-life care
and government initiatives and policy.
Seven years on from the publication of the
NHS Cancer Plan (DH, 2000), which identified
patchy community services along with insufficient training opportunities, it appears that little has changed. Anticipatory planning could, as
this study reveals, help to pre-empt some of the
associated difficulties. However, this study has
shown that, with appropriate professional input,
coordination, foresight, equipment and flexibility at the end-of-life, not only can a good death
be achieved, but also that the patient can live
with quality of life in the time preceding death
(Randall and Downie, 2006).
The act of attempting to define a good death
may, in itself, be restricting care delivery and
behaviour in end-of-life care. In light of patientcentred care and choice, and the diversity of
current society, attempting to place a good
death in a box, with clear parameters, may be
limiting and absolutist. Kearney (1996) rightly
points out that a good death does not make it
all better, it is still death, while Masson (2002)
challenges the use of terminology such as a
good death suggesting it is often inappropriate
and idealized. Instead, a good enough death
can be characterized by people working together
to achieve a death that meets the realistic expecJPN
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