Compliance requirements can lead to significant losses in health care when fines or penalties are levied. Describe the challenges internal political environments and external political regulations have on human resource groups and their ability to ensure a health care organization can focus on patient-centered care. Provide supporting references for your response.

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30 British Journal of Community Nursing January 2021 Vol 26, No 1

Carer and staff perceptions of
end-of-life care provision: case
of a hospice-at-home service
Alison Ward, Judith Sixsmith, Stephen Spiro, Anne Graham, Heather Ballard,
Sue Varvel, Jane Youell
Alison Ward, Senior Researcher, University of Northampton, Northampton
Judith Sixsmith, Professor, School of Health Sciences, University of Dundee, Dundee, Scotland
Stephen Spiro, Professor of Respiratory Medicine and Chair Board of Trustees; Anne Graham, Clinical Nurse Specialist, Night
Team; Heather Ballard, Adult Lead; Sue Varvel, Director of Nursing & Clinical Services; all at Rennie Grove Hospice Care, Tring
Jane Youell, Research Fellow, University of Leeds, School of Healthcare, Leeds

[email protected]

Palliative and end-of-life care (PEOLC) is holistic care delivered during the last year of life that aims to maintain patient comfort and relieve suffering and support illness
management (Sam et al, 2011). According to Government and
clinical guidance (Leadership Alliance for the Care of Dying
People, 2014; NHS, 2014; National Institute for Health and Care
Excellence (NICE), 2017), the priority is for people receiving
PEOLC to be involved in that care, with services being person-
centred, available day and night, and supporting expressed
preferences, particularly regarding place of death (King et al,
2004; O’Brien and Jack, 2010). Recommendations also call for
greater quality and integration of PEOLC provision (Institute
for Public Policy Research (IPPR), 2018).

A Dying Matters survey (2015) reported that 70% of people
prefer to die at home, although around 46% currently die in
hospital (National End-of-life Care Intelligence Network, 2018),
suggesting that more could be done to support patients to die

at home. The number of people dying at home in the UK has
increased recently due to the COVID-19 pandemic (Bowers
et al, 2020), with figures showing above 5-year average figures
(Office for National Statistics, 2020). However, dying at home is
only preferred when families are well-supported and pain can be
managed (Robinson et al, 2016). People wishing to die at home
need access to a range of specialist care services, such as palliative
and district nurse (DN) care, Marie Curie night sitters, doctor
visits and family care provision (Gomes et al, 2015). While the
literature identifies benefits to home-based PEOLC, through
meeting patient and family’s needs and preferences of care and in
cost savings (McCaffrey et al, 2013), there is inadequate evidence
of its impact on hospital admissions and preferred place of death
(Palliative and End-of-life Care Priority Setting Partnership
(PECPSP), 2015). The possibility of dying at home is improved
by access to domiciliary care and medical equipment and should
result in a reduction in inappropriate use of hospital beds (Gomes
et al, 2015). Community-based PEOLC may reduce the number
of unplanned hospital admissions and emergency department
visits, thereby satisfying people’s preferences and improving
quality of death (Sutradhar et al, 2017; Wright et al, 2018).

This article reports on a charitable hospice-at-home
organisation in the south of England that provides specialist
care for patients diagnosed with life-limiting illnesses and their
families. Through the 24/7 hospice-at-home service, patients
can choose to receive practical nursing care at home, advice and
help to control symptoms, with the aim of avoiding hospital
admissions. Initial overnight contact is by telephone, when a
nurse will assess the call to determine the best course of action.
There is a well-established relationship with the hospice night
team and DNs, as the localities served have an overnight DN
service. At the beginning of each night, the night team will flag
any potential challenges and, if the hospice team is with a patient
when they receive another call, they can liaise with the DNs to
ensure patients/families receive appropriate input.

The hospice evaluated its night service to identify its impact
on patients and/or family carers. Key aims were to identify

ABSTRACT
People requiring palliative care should have their needs met by services
acting in accordance with their wishes. A hospice in the south of England
provides such care via a 24/7 hospice at home service. This study aimed
to establish how a nurse-led night service supported patients and family
carers to remain at home and avoid hospital admissions. Semi-structured
interviews were carried out with family carers (n=38) and hospice-at-home
staff (n=9). Through night-time phone calls and visits, family carers felt
supported by specialist hospice staff whereby only appropriate hospital
admission was facilitated. Staff provided mediation between family carer
and other services enabling more integrated care and support to remain at
home. A hospice-at-home night service can prevent unnecessary hospital
admissions and meet patient wishes through specialist care at home.

KEY WORDS
w Palliative care w Hospice at home w Hospital admissions w Night service
w Out-of-hours

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British Journal of Community Nursing January 2021 Vol 26, No 1 31

whether and how the night service supported people’s wishes to
remain at home and explored staff and family carer perceptions
of this service on hospital admissions.

Methods
The evaluation was carried out between July and December
2016, using a mixed-methods approach (Creswell and Creswell,
2018). This paper presents the qualitative findings from family
carer and staff interviews to investigate their perceptions of care
delivery and impact on patients’ ability to remain at home and
avoid hospital admissions.

Family carer perspective
Face-to-face semi-structured interviews were conducted with
a purposive sample of family carers (n=20). Participants were
identified from patient records to ascertain patients who had
contacted the night service during the data collection period;
consented to take part in the research and were not deemed
vulnerable by their care team (Table 1). Participants were recruited
and interviewed by hospice staff/volunteers who had no direct
involvement with the provision of care. As peer researchers,
the interviewers had service knowledge and were sensitive to
the situations encountered in PEOLC. They were trained in
research methods by two members of the research team who
were experienced in conducting research with seldom-heard
groups. Regular support was provided during data collection to
ensure consistency in approach and manage any issues (Table 1).

Semi-structured telephone interviews were also carried out to
explore the views of former family carers whose family member
had died in the past 12 months. Participants were recruited
via a questionnaire, which was sent to 268 English-speaking
family carers, and 84 completed questionnaires were returned.
Participants were invited to a follow-up interview for a more
in-depth exploration of their experiences. Following expression
of interest from participants, 18 interviews were conducted by
experienced university researchers and audio-recorded (Table 2).

Staff perspectives
Face-to-face and telephone interviews were conducted with a
convenience sample of staff members, depending on availability.
All staff working with or in the night service were invited to
participate, and nine agreed (Table 3). Interviews were conducted
by experienced university researchers and audio-recorded.

Data analysis
Interviews were transcribed verbatim, anonymised and subject
to thematic analysis, using Braun and Clark’s (2006) six-step
framework of familiarisation, generation of initial codes and
identification and refining and naming of themes. Initial analysis
was undertaken by the research team to identify potential
themes, which were then co-analysed with hospice staff and
volunteers via two workshops, ensuring that staff ’s tacit/
contextual knowledge was included.

Ethics approval
Ethics approval was obtained from the relevant faculty ethics
committee at the university conducting the research (REF:
RGHaHC-04.05.2016), and governance approval was gained

from the hospice. Participants volunteered to participate, after
receiving complete information regarding the study. Written
and/or verbal consent was obtained for all interviews.

Results
The impact of the overnight PEOLC service and its effect
on care decisions was discussed from the aspect of fulfilling

Table 1. Demographic characteristics
of current family carers (n=20)

Gender
Male
Female

9
11

Relationship to patient
Parent
Spouse
Unknown

4
15
1

Hospitalised when receiving care with
the hospice
Yes
No

8
12

Type of contact with the hospice
Telephone and visit contact 20

Table 2. Demographic characteristics
of former family carers (n=18)

Gender
Male
Female

5
13

Relationship to patient
Parent
Spouse
Child/other family member

4
12
2

Hospitalised when receiving care with
the hospice
Yes
No

2
16

Type of contact with the hospice
Telephone and visit contact 18

Table 3. Demographic characteristics of staff
members (n=9)

Gender
Male
Female

1
8

Staff roles in hospice*
Night staff (nursing and healthcare assistant)
Nurse (day staff)
Healthcare assistant (day staff)

7
51
8

Staff roles participating in interview
Night staff (nursing and healthcare assistant)
Nurse (day staff)
Healthcare assistant (day staff)

3
5
1

*Total number of staff roles at the service

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32 British Journal of Community Nursing January 2021 Vol 26, No 1

patients’ wishes, appropriateness of hospital admissions, brokerage
between services and future care planning. Verbatim quotations
are included, with a code for the interviewer, interview number
and whom the quotation is from.

Balancing needs, expectations and wishes
The night service needed to strike a balance in meeting carer
expectations and desires to maintain normalcy at home, as well
as supporting a sense of patient personhood until death. Family
carers reported that the service was important in guiding them
through decision-making and helping to meet patient’s wishes
to remain at home with ‘all the benefits of the nursing profession
in [our] own home’ (former carer, AW9).

‘That was our biggest anxiety, to make sure that he
[patient] didn’t go to hospital, and the (night) service
made it possible for that not to happen.’ (former
carer, AW01)

‘What I experience from the [service] nurses is an
empathy with the person in the situation that they’re
in, with the suffering that they’re in and obviously a
very specialised knowledge in the drugs and the pain.’
(carer, HB02)

Family carers admitted that home care was challenging,
involving a ‘huge learning curve’ about medical conditions
and managing the emotional complexities of the caring role.
However, meeting the patient’s wishes was important in
simultaneously relieving family carer difficulties. Therefore, a
balance was needed between managing carer and patient needs.
Having access to the night service was reported as vital to
achieving this and providing the most appropriate care, while
also helping to reduce worries associated with home care.

‘We needed to be equipped with as much information,
as we needed to get through the night, which I think
we were able to do, and called on that night service
when we felt that we were out of our depth.’ (former
carer, AW01)

‘She had a syringe driver put in, and for some reason,
two nights on the trot, the syringe driver stopped
working. So, sort of like, you know, midnight, I was
having to sort of phone up …’ (carer, RA05)

The challenge for staff was, in part, focused on dealing with
family carer concerns, which were often heightened at night.
Both staff and family carers described how, for carers, a sense of
helplessness could pervade the night-time hours, which were
said to pass slowly, and access to daytime services seemed far away.

‘The night is, from a carer’s perspective, a gloomy
period, because you don’t have the normal resources to
call upon.’ (carer, HB03)

‘It was lovely to just know somebody was at the end
of the telephone, at the, you know, the darkest hours
of the night when you think there’s nobody around,
everything’s shut, you can’t get help from anywhere,
other than an ambulance, which [patient] didn’t want

… and it’s quiet too, you hear [patient’s] breathing
more, you hear, you know, stuff that you wouldn’t
normally take any notice of, that you would just pass
it by during the day. It’s not as stressful in daylight
hours.’ (former carer, AW03)

Staff reported that a key strength of the service was its ability
to manage patient or carer concerns, offer reassurances and
information or advice that could reduce worries and relieve
symptoms. This offered a safety net and helped carers through
these feelings. Staff felt they were reducing the impact of difficult
circumstances that could exacerbate stress and carer burnout.

‘I think [the night service is] adding comfort to the
family, that there is somebody there they can talk to and
give them that reassurance.’ (manager, JS07)

‘It’s about managing expectations, talking people
through, just getting them to be calm and just reassuring
them, because I think we forget what a responsibility
it feels like having someone at home who’s dying. For
them, it feels like it’s all on them, they’re on their own.’
(day nurse, JS03)

A final balance that family carers faced was in deciding when
to contact other services overnight. When prompted, carers
(n=14) suggested they would contact the NHS emergency
helplines (999/111), district nurses, the out-of-hours doctor, local
hospital or Macmillan services as an alternative to the overnight
hospice service. However, some family carers reported this as a
‘last resort’, fearing a hospital admission or lengthy conversations
describing the patient’s condition to someone with no prior
knowledge. Families felt this could be distressing and disruptive.
For these family carers, the overnight hospice service provided
an alternative to calling on the emergency services, and it was
perceived to have a more direct connection to other services.

‘I rang the 111 number, and they tend to send an
ambulance out anyway, but with the [service], there was
a situation. Then, when I rang, and they felt perhaps a
doctor should come, and the doctor came straightaway;
it was under an hour, where with the 111, it was a bit
more long-winded.’ (carer, SD02)

Appropriateness of hospital admissions
Family carers and staff acknowledged that some hospital
admissions were necessary, providing accounts of admissions that
were perceived to be in the best interest of the patient’s comfort,
or resulted from a deterioration in their condition:

‘I’d had to phone 999 sometime before, because then he
had to go into hospital with pneumonia.’ (carer, RF03)

‘I’ve taken her [patient] to A&E. That’s been
temperature related because with the cancer, when you
get to 38 degrees, then it’s a trigger point … so I’ve had
an ambulance out.’ (carer, HP03)

Family carers reported that night service staff sometimes
recommended calling an ambulance after assessing the patient’s

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34 British Journal of Community Nursing January 2021 Vol 26, No 1

condition, viewing it in the patient’s best interest. This resulted in
an extended hospital stay for one patient, while another required
a drip for extreme dehydration. Staff spoke of the complexities of
illness at the end of life and how conditions can change quickly
and may require specialist medical attention which could not be
provided at home, for example, specific cancer symptoms. Carers
perceived the night service to offer a flexible approach, which
could contribute to emergency service referrals, including the
out-of-hours doctor and in-patient hospices.

Mediation between families and services
There was a sense that staff, patients and carers needed to work
together to ensure that patients’ wishes could be managed. One
carer explained the complexities of navigating between services
and accessing medication as follows:

‘You get blockages all the time between the [GP],
between the nursing service, between chemists, you
know, even getting prescriptions, you end up … you’ve
got to go to the doctors to get the prescription, then
you’ve got to find a chemist that has all these drugs,
and often they don’t, so you’ve got to wait for the next
day.’ (former carer, AW02)

However, family carers acknowledged the close links the
night service had with other services and valued its ability to
navigate the complex health and social care systems on their
behalf, ensuring that timely care was provided:

‘And in the morning, [nurse] came with a doctor
because, obviously, they’d had the report back about
the night, and they gave [patient] an injection and he
slept most of the morning.’ (carer, HB03)

Such brokerage by hospice staff related to managing and
negotiating expectations. A staff member explained that
families should be involved in the care decisions if inappropriate
admissions are to be avoided.

‘It’s important that the patient and the family are
involved in the conversations about hospital admission.
I think maybe inappropriate admissions would be
more because it’s carer breakdown potentially, or not
having lay carers in place to help support care packages.
Sometimes, patients’ families cannot cope, no matter
what support is put in. Sometimes, that can go against
what the patient wishes, so you try and broker that and
talk it through and put in whatever support you can.’
(day nurse, JS03)

Future care planning
The hospice works with patients and families enabling them to
plan PEOLC; such planning was reported to be fluid, flexible
and renegotiated as changes were experienced by patients and
families. Staff reported that access to services influenced decisions
of where to die and that hospices, rather than hospitals, may
provide more suitable care than the ‘at home’ service.

The need for conversations around PEOLC plans and ‘do
not resuscitate’ orders were highlighted by staff. These were
said to aid hospital avoidance, help families make informed

choices and allow staff to ensure the necessary paperwork was
in order, enabling patient’s wishes to be fulfilled. Staff identified
that navigation through complex care pathways is not always
straightforward, especially when the patient’s and family’s wishes
differ or change. The role of the night team was to action these
plans when a crisis occurred overnight.

‘The patient who we’re supporting well at home, who
we’ve planned and thought about, so we’ve got the ‘just
in case medications’ in, [and] do not resuscitate, we’ve
had the conversation about where do you want to be
and then they hit a crisis, I think the night staff are
invaluable there because they’ll help us keep that plan
in place.’ (clinical nurse specialist, JS01)

Discussion
This evaluation has contributed to knowledge on home PEOLC,
expanding on what it means to provide this care, together with
evidence that hospital admissions were perceived, by both
family carers and staff, to be preventable with the support of an
overnight nursing service. However, it was acknowledged that
some hospital admissions are clearly necessary and appropriate
regardless of overnight care provision. This study also developed
an understanding of the ways in which a dedicated overnight
service can support home-based PEOLC.

The night service supported patients’ sense of personhood
and choice to die at home, enabling as good a quality of life as
possible before death, which is something many value at the
end of life (Pollock, 2015). An overnight service can mitigate
the potentially negative perceptions about dying at home, that
is, it can be lonely, painful and distressing (Pollock, 2015). The
night service recognised that caring for someone dying at home
requires considerable emotional labour and that joint support
for the patient and family carers is invaluable in relieving that
sense of loneliness, which is often worse at night. Unexpected
hospital admission may be more likely to occur out-of-hours
because of the increased anxiety in these hours that timely care
cannot be obtained (King et al, 2004). A lack of out-of-hours
services is a major factor that can result in hospital admission
during the last days of life (O’Brien and Jack, 2010). Additionally,
carer anxiety can be reduced with out-of-hours provision and
good communication (King et al, 2004; Aparicio et al, 2017;
Hutchinson and Van Wissen, 2017), particularly if services know
about the patient prior to a visit or have medication available
out-of-hours (King et al, 2004). The complexity of PEOLC and
the potentially rapid changes in the patient’s condition that may
occur can challenge community care, which can be perceived
as not being responsive (Robinson et al, 2015). However, the
findings of this study would suggest that a dedicated 24/7
service can be responsive to these challenges, particularly those
surrounding reducing anxieties and carer burden.

An aspect that emerged from this study was the potential for
carers and patients to be hesitant in calling overnight services,
initially (Sixsmith et al, 2017). Access to care and support
overnight can minimise unnecessary hospital admissions and be
integral to symptom management. Services, such as hospice-at-
home outreach services or community/district nursing, need
to provide greater assurance to patients that calling a service

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overnight is an appropriate and welcomed response to relieve
patient or carer distress and perhaps emergency calls.

Studies suggest a greater likelihood of high levels of carer
burden when caring at home until death, and this has a greater
chance of resulting in carer depression, stress, isolation and health
problems (Jack et al, 2016; Horsfall et al, 2017). Carer burden
may result in unnecessary hospital admissions (King et al, 2004),
suggesting that out-of-hours PEOLC services should work to
minimise carer burden and consequently minimise unnecessary
hospital admissions (Aparicio et al, 2017). Staff from this study
identified that this as an essential part of their service, and they
felt that carer burden could be mitigated with open discussions to
keep family members informed of what impact home care could
have. Involvement in care and decision-making is an important
aspect of care provision, ensuring that families understand
how an individual’s condition may progress (Department of
Health (DH), 2008). Such conversations have previously been
considered challenging in the hospital environment (Robinson
et al, 2014). As such, it is recommended that the provision of
a quality at-home service should enable these conversations
to become more integrated in the care process, with all care
providers involved, to maximise consistency across services. It
is also recommended that services reinforce the message that
day or night calls for emotional support are an important and
relevant part of PEOLC.

Part of these discussions involve talking about ACP and
having relevant paperwork and care decisions in place. Another
part is to ensure timely and effective symptom management
and use of medication at the end of life (Bowers and While,
2019). Symptom relief was cited as a key factor of care and
support for the overnight service and included in ACP with
the provision of ‘just-in-case drugs’ and anticipatory prescribing,
which enabled staff to meet the needs of patients out-of-hours.
The IPPR report on PEOLC (2018) recommended holding
conversations about death and dying with families. These
conversations need to occur early following the diagnosis,
to adequately meet patient’s wishes, particularly as a patient’s
condition can change suddenly and need action. Conversations
around PEOLC are crucial so that ACP is put in place (Wilson
and Birch, 2017) and anticipatory prescribing can be considered
that meets the patient’s preferences (Bowers and While, 2019).
Government and clinical guidance (NHS, 2014; Royal College
of Physicians (RCP), 2016) advocate for PEOLC planning to
ensure that people can express choices of where and how they
want to die, so that services are aware of refusal of treatment,
for example. Part of these conversations are an understanding
of the potential progression of symptoms to inform decisions
on symptom management and use of medication (Bowers
and While, 2019). These conversations can also be aided by
carer understanding and knowledge of PEOLC and what it
means to care for someone at home. Families reported on the
learning curve regarding PEOLC, often through experiencing
different situations dealing with medication management,
and on the support received from staff, who included nurse
prescribers and/or close liaisons with GPs or DNs. There is
potential to develop further understanding of how carers can be
supported, and training could be offered to support home care.
Another factor in the improved provision of care is the use of

‘just-in-case’ medication, which is invaluable for out-of-hours
use. The night team has a nurse prescriber and, as the hospice is
a nurse-led organisation, plans include increasing the number of
nurse prescribers to allow for reactive as well as proactive care.
Adding nurse prescribers may also alleviate the pressure on DN
prescribers or out-of-hours doctors.

This is also important for inter-professional working, as
systems and processes may differ, resulting in tensions in care
decisions (Keane et al, 2017). Brettell et al’s (2018) review of
out-of-hours primary care end-of-life contacts reported on the
pressure these differences can put on doctors’ services. Therefore,
a collaborative, multi-stakeholder approach to PEOLC care can
provide a more efficient and holistic way to treat patients and
meet their needs, as well as reducing the potential burden on
other, already-stretched services.

Limitations
Using peer researchers could have impacted on the experiences
that the participants shared. However, peer researchers can aid
research undertaking, eliciting insights through tacit knowledge
and experience, which enhances data collection; with appropriate
training and ongoing support, they can be an asset (Lushey and
Munro, 2014). Thus, the peer researchers in this study were
trained to ensure rigour in data collection/analysis.

Conclusion
PEOLC involves a complex interplay of different services to
support a range of physical, psychological and social needs across
a range of settings. A home-based night service can enhance the
quality of care, preventing calls to the emergency services through
provision of support for patients and families in alleviating
their anxieties and sense of loneliness at night, and provision of
appropriate care and treatment. However, there are occasions
where care needs can only be met in hospital, regardless of the
availability of community care. A clear recognition of the synergy
between community and acute care is, therefore, required to
support decision-making and ensure staff are sufficiently skilled
to support patients and their families out-of-hours.

The emotional labour experienced by carers supporting
someone to die at home was recognised as being especially
difficult to address at night when worries magnify and service
support is less available. However, with day- and nighttime
support, carer and patient wishes to die at home can be fulfilled.
This is noteworthy, as patients and families who live in localities
without home-based night services may be disadvantaged. Such
worries can be alleviated through phone support or, increasingly,
on video-conferencing platforms (as the COVID-19 pandemic
has highlighted), and as such, NHS in localities without hospice-
at-home nighttime outreach support should be encouraged to
develop accessible day and night remote support.

Communication between out-of-hours services, patients and
carers and other health and social care providers is essential in
supporting people to die at home. The challenge arises in how
best to support communication between different PEOLC
services, so that they can best support people who wish to be
cared for in the community. This study found that only through
open and sometimes difficult discussions, and a skilled and
confident staff, can patients’ needs be met. BJCN

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