PLOS ONE

RESEARCH ARTICLE

Understanding patient and family utilisation

of community-based palliative care services
out-of-hours: Additional analysis of systematic
review evidence using narrative synthesis
Joanna Goodrich ID1*, Caleb Watson ID2, Inez Gaczkowska1, Richard Harding2,
Catherine Evans1,3, Alice Firth1, Fliss E.M. Murtagh4

1 Cicely Saunders Institute of Palliative Care and Rehabilitation, King’s College London, London, United
a1111111111
Kingdom, 2 King’s College London Medical School, London, United Kingdom, 3 Sussex Community NHS
a1111111111 Foundation Trust, Brighton, United Kingdom, 4 Wolfson Palliative Care Research Centre, Hull York Medical
a1111111111 School, University of Hull, Hull, United Kingdom
a1111111111
a1111111111 * [email protected]

Abstract
OPEN ACCESS

Citation: Goodrich J, Watson C, Gaczkowska I,

Harding R, Evans C, Firth A, et al. (2024)
Understanding patient and family utilisation of
Background
community-based palliative care services out-of- Community-based out-of-hours services are an integral component of end-of-life care. How-
hours: Additional analysis of systematic review
ever, there is little understanding of how patients and families utilise these services. This
evidence using narrative synthesis. PLoS ONE
19(2): e0296405. https://doi.org/10.1371/journal. additional analysis of a systematic review aims to understand and identify patterns of out-of-
pone.0296405 hours service use and produce recommendations for future service design.
Editor: Gunasekara Vidana Mestrige Chamath
Fernando, University of Sri Jayewardenepura, SRI
LANKA
Method
Received: May 4, 2023
Data on service use was extracted and secondary analysis undertaken, from a systematic
Accepted: December 12, 2023 review of models of community out-of-hours services. Narrative synthesis was completed,
Published: February 21, 2024 addressing four specific aspects of service use: 1.Times when patients/families/healthcare
Copyright: © 2024 Goodrich et al. This is an open
professionals need to contact out-of-hours services; 2. Who contacts out-of-hours services;
access article distributed under the terms of the 3. Whether a telephone call, centre visit or home visit is provided; 4. Who responds to out-
Creative Commons Attribution License, which of-hours calls.
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.

Data Availability Statement: All relevant data are

Results
within the manuscript and its Supporting Community-based out-of-hours palliative care services were most often accessed between
Information files.
5pm and midnight, especially on weekdays (with reports of 69% of all calls being made out-
Funding: This study initially started as a Scholarly of-hours). Family members and carers were the most frequent callers to of the services
Project as part of Caleb Watson’s medical degree
(making between 60% and 80% of all calls). The type of contact (telephone, centre visit or
and focuses on understanding and identifying
patterns of community-based out-of-hours home visit) varied based on what was offered and on patient need. Over half of services
palliative care service utilisation. It forms part of a were led by a single discipline (nurse).

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

larger out-of-hours review describing the Conclusions

components of models of such services, which in
turn is part of a wider study ‘Understanding and Out-of-hours services are highly used up to midnight, and particularly by patients’ family and
improving community palliative care outside carers. Recommendations to commissioners and service providers are to:
normal working hours’ funded by Marie Curie, • Increase provision of out-of-hours services between 5pm and midnight to reflect the
Research Grant Research Grant MCRGS-
20171219-8011. Fliss Murtagh, one of the authors,
increased use at these times.
is a National Institute for Health and Care Research • Ensure that family and carers are provided with clear contact details for out-of-hours
(NIHR) Senior Investigator. The views expressed in support.
this article are those of the author(s) and not
• Ensure patient records can be easily accessed by health professionals responding to
necessarily those of the NIHR, or the Department
of Health and Social Care. The funders had no role calls, making the triage process easier.
in study design, data collection and analysis, • Listen to patients, family and carers in the design of out-of-hours services, including
decision to publish, or preparation of the telephone services.
manuscript.
• Collect data systematically on out-of-hours-service use and on outcomes for patients
Competing interests: The authors have declared who use the service.
that no competing interests exist

Background
‘Out-of-hours’ services provide urgent care outside normal working hours, typically evenings
(often 6pm-8am), weekends (from Friday evening to Monday morning), and public holidays
[1]. Out-of-hours services are crucial for patients at the end-of-life with serious or life-limiting
illnesses who may experience new or worsening symptoms at any time [2]. Patients may
require out-of-hours care and support urgently, and if unavailable from community services,
may attend an emergency department to obtain the healthcare needed. This can be distressing
for the patient and their family [3, 4]. The need for community out-of-hours services is
increasing with a growing ageing population and the resulting higher prevalence and burden
of chronic conditions [5].
Patients near the end of life largely prefer to receive care in their usual residence, at home,
and to die at home with the support and care in place [6]. Patients value being in a place where
they are surrounded by family and friends, in a comfortable and familiar environment, where
they can still have security and autonomy and they can die with dignity [7]. The goal of com-
munity-based palliative care services is to provide the best possible quality of life for patients
and their families facing challenges associated with life-limiting illness, whether physical, psy-
chosocial or spiritual [8]. These services are an integral component of end-of-life care. They
can be divided into care provided by specialist palliative care (SPC) professionals, and care
provided by generalists (professionals who do not specialise in palliative care) [10, 11]. Special-
ist palliative care is provided by healthcare professionals such as consultants in palliative medi-
cine and clinical nurse specialists who have undergone specific palliative care training,
undertake this role for most of their professional time, and have additional skills and experi-
ence to support and care for patients with complex needs as a result of their terminal illness.
Care provided by those who are not SPC professionals (generalists) is provided by general
practitioners and district nurses with general skills and experience in palliative care but for
whom palliative and end-of-life care is not the main part of their work [9–12].
The provision of out-of-hours palliative care services in the community is highly variable in
quality, and provision is inequitable [13, 14]. Out-of-hours services provide care for almost
two-thirds of the week, but typically receive fewer resources than in-hours services [1, 15].
This is particularly evident in more rural and remote areas where there is poor availability of

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

healthcare resources due to large geographical areas, workforce shortages, and limited infra-
structure [16, 17].
These inequities have been highlighted for some time [16–19]. A recent review by Marie
Curie amplified the inconsistent provision of care, particularly in deprived and more rural
areas and for patients with non-cancer diagnoses [4, 18, 19]. Furthermore, out-of-hours pallia-
tive care services pose added challenges regarding patient safety. Challenges include care being
delivered by several different providers unfamiliar with a patient’s needs and medical history,
inefficient communication and information transfer between healthcare teams, errors in pre-
scribing and administering medications, and limited access to timely care and advice with
practical management like managing urinary catheters and nasogastric tubes [15]. Without
adequate care and support, unexpected events can result in often burdensome unplanned hos-
pital attendance and admission [20].
Most studies have focused on out-of-hours services provided by primary care teams. Few
studies have thoroughly detailed and characterised the use of community out-of-hours pallia-
tive care services and explored to what extent these models differ [21]. An understanding of
the use of these services is essential to better inform service provision and improve service
quality.
Our original systematic review synthesised evidence on the components, outcomes, and
economic evaluation of community-based ‘out-of-hours’ care for patients near the end of life
and their families [22]. However, there was not scope to report on service utilisation in detail.
With limited resources for out-of-hours care, we considered it vital to better understand the
evidence on patterns of service utilisation out-of-hours. Therefore, we aimed–in this additional
analysis - to synthesise evidence on the use of out-of-hours services by people receiving pallia-
tive care in the community; identify patterns of use and provision; and make recommenda-
tions for the design of services.
This review aims to answer the following research questions–what is the evidence on:
1. When patients/families/health care professionals need out-of-hours services (time of
contact)?
2. Who is contacting the out-of-hours services (who is contacting)?
3. Is it a telephone call, centre visit or a home visit provided (type of contact)?
4. Who responds to out-of-hours calls?

Methods
This review is an additional analysis of a recently completed systematic review that examined
the components, outcomes, and economic evaluation of community-based ‘out-of-hours’ care
for patients near the end of life and their families [22].
The original review was reported following PRISMA guidelines (Fig 1). It was a mixed
method systematic narrative review of quantitative and qualitative research studies. A two-
stage search strategy was used: first a search of four electronic databases MEDLINE, EMBASE,
PsycINFO and CINAHL between 1st January 1990 to 1st August 2022 was undertaken, and
then a second search strategy involved identification of trials on home-based out-of-hours pal-
liative care included in the Cochrane review of home-based palliative care [6]. Further details,
including MeSH and keyword terms, inclusion and exclusion criteria and quality assessment,
are published elsewhere [22].

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

Fig 1. PRISMA flowchart for the original systematic review [22].

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This study extends the original review by examining in detail the out-of-hours service use
(time of contact, who is contacting, type of contact, and who responds to out-of-hours calls),
as reported in the included studies on community-based out-of-hours care. Pask et al’s adapta-
tion for palliative care of Bronfenbrenner’s Ecological Systems Theory underpinned both this
study and the original review to guide the analysis and interpretation [4]. This adapted theory
highlights the many layers that build complexity for patients and families living with advanced
illness, including linkage with individual context and environmental factors, such as service-/
system-level provision of palliative care that impact the use of out-of-hours services.
In the original review, 64 papers relating to 54 studies met eligibility criteria (from the 9,258
titles screened). This additional analysis involved identification of studies included in the origi-
nal review reporting data on the use of out-of-hours and other services, and exclusion of those
with no data on our additional questions. Data on service use were extracted and tabulated as
shown in Table 1, and analysed further to explore patterns of service use and provision [23].

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

Table 1. Studies included for additional analysis: First author, date, country and data included on provision of out of hours care.
First author, Study title Data included Design and content Reported association with positive
publication date on out of hours outcomes?
and country. care
Adam (2014) [24] Why do patients with cancer access out- Type of contact Retrospective review of anonymous case Outcomes not reported (N/A).
Scotland of-hours primary care? A retrospective records. 950 contacts OOH. Descriptive Of those who contacted it was because of
study. study–reason for contact. a symptom 262/852. Most frequent
symptoms were pain.
Ahlner-Elmqvist Place of death: hospital-based advanced Number & Prospective non randomised study Yes. Place of death: significantly more
et al (2004) [25] home care versus conventional care background of patients died at home in the AHC group
Sweden HCPs (45%) compared with the CC group
(15%). Death at home for the
intervention group was associated with
living together with someone.
Aranda (2001) [26] Inpatient hospice triage of ‘after-hours’ Time of contact Retrospective review of use of OOH Not reported
Australia calls to a community palliative care Type of contact service (n = 244) 70% face to face, 30% Changes to model of OOH care
service telephone implemented–but not what they were
Aristides, M. and The effects on hospital use and costs of a Number & Costs collected including staff time, Yes. Hospital costs. No statistical
A. Shiell (1993) domiciliary palliative care nursing background of consumables, overheads and capital. difference (Reduction in hospital
[27] Australia service. HCPs Average number of inpatient days for admissions and lower hospital costs not
patients admitted to hospital. Number fulfilled. Increase in overall costs.)
of admissions to hospital.
Baird-Bower Help is just a phone call away: after- Time of contact Retrospective analysis of calls to the Yes. Ambulance or ED visit.
(2016) [28] hours support for palliative care patients Who is telephone line combined with referral Patients who engaged with the after
Australia wishing to die at home. contacting and mortality data. It was estimated that hours service were less likely to contact
for every 100 patients that called the the ambulance service compared with
after hours service 28 ED presentations patients who had never called after hours.
were potentially avoided Patients who engaged with the service
were less likely to present at an ED than
patients who had never called after hours.
Of patients who wanted to die at home,
patients who died at home were more
likely to use the after hours service than
patients who were admitted to an
institutional setting.
Baldry, C. and S. An audit of out-of-hours advice services Time of contact Retrospective analysis of calls and visits N/A. Further education rolled out to
Balmer (2000) [29] provided by hospice staff. Who is to hospice inpatient unit health care professionals on the most
England contacting common reasons for contacting the
Type of contact hospice
Number &
background of
HCPs
Blankenstein, N., Out-of-hours palliative care provided by Type of contact Retrospective phone call analysis Yes. When information was transferred
et al. (2009) [30] GP co-operatives: Availability, content, [shared?] [(25%of palliative patients)
Netherlands and effect of transferred information. patients were referred to hospital less
often.
Brettell, R., et al. What proportion of patients at the end Time of contact Population-based study linking a N/A
(2018) [31] of life contact out-of-hours primary Type of contact database of patient contacts with OOH OOH services see around one third of all
England care? A data linkage study in primary care (n = 102877) with the patients who die in a population
Oxfordshire register of all deaths within Oxfordshire.
Access to the service is via NHS111.
Buck, J., et al. Persistent inequalities in Hospice at Who is Retrospective case note analysis (321 N/A. Twice as many night care episodes
(2018) [32] Home provision contacting patients) were requested (n = 1237) as were
England Number & provided (n = 613). More staff taken on.
background of
HCPs
Butler (2013) [33] Setting up a new evidence-based Number & Quasi experimental multi centred Yes. Preferred place of death. In the
England hospice-at-home service in England background of controlled evaluation control group 61.9% achieved their
HCPs preferred place of death compared to
63% in the intervention group.
(Continued )

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Table 1. (Continued)

First author, Study title Data included Design and content Reported association with positive
publication date on out of hours outcomes?
and country. care
Campbell et al Introducing ‘Palcall’: an innovative out- Time of contact Practice development report N/A. Describes number of patients
(2005) [34] UK of-hours telephone service led by Who is registered and times and purpose of calls.
hospice nurses contacting
Number &
background of
HCPs
Carlebach (2010) A review of an out-of-hours telephone Who is Evaluation of an out-of-hours service N/A. Service use reported (52% of calls
[35] UK support service for palliative care contacting created for palliative care patients in a from carers, 17% from district nurses, 7%
patients and their families primary care trust from the patient)
Carr et al (2013) PAL-MED CONNECT: A Telephone Who is Retrospective descriptive of 498 calls N/A.
[36] USA Consultation Hotline for Palliative contacting received over 2.5 years
Medicine Questions Number &
background of
HCPs
Dhiliwal et al Impact of Specialist Home-Based Number & Prospective cohort study? (not clearly Yes. Psychological care, out-of-hours
(2015) [37] India Palliative Care Services in a Tertiary background of stated) care, social care, place of death,
Oncology Set Up: A Prospective Non- HCPs bereavement support. All patients
Randomized Observational Study receiving specialist home care had good
relief of physical symptoms. Of the
42.68% who received home based
bereavement care, 91.66% had good
bereavement outcomes.
Doré 2018 [38] UK Community palliative medicine out-of- Time of contact Analysis of data from an out-of-hours N/A
hours needs and the 7-day week: a Type of contact general practice cooperative telephone
service evaluation. calls and visits by general practitioners
over one year.
Elfrink et al (2002) Problem solving by telephone in Who is Retrospective evaluation of telephone N/A. Telephone service and use of the
[39] Netherlands palliative care: use of a predetermined contacting service PAT made it possible to solve 97%
assessment tool within a program of problems without admission
home care technology
Grande et al (2000) A randomized controlled trial of a Number & Randomised controlled trial Yes. Place of death 1. patients who were
[40] UK hospital at home service for the background of admitted to CHAH had significantly
terminally ill HCPs longer survival from referral to death
compared with patients allocated to
CHAH but not admitted to the service
(median 16 and 8 days, respectively,
Z = 3.005, P = 0.003).
2. Patients who spent time at home
during their final 2 weeks had shorter
survival from referral than those who did
not, whether control or CHAH group
(median 10 and 17 days, respectively,
Z = 2.849, P = 0.004). Among patients
who spent time at home during the final
2 weeks of life, the CHAH and control
group did not differ in terms of cancer
prevalence, proportion living alone, age,
sex or survival from referral.
3. The control and CHAH group did not
differ significantly in the proportion who
spent time at home during their final 2
weeks (77% versus 82%; χ2 = 0.557,
df = 1, P = 0.455).
4. In general, control group was rated
higher psychological distress and
symptoms from GPs, nurses and
informal carers
(Continued )

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Table 1. (Continued)

First author, Study title Data included Design and content Reported association with positive
publication date on out of hours outcomes?
and country. care
Jiang et al (2012) A Descriptive, Retrospective Study of Time of contact Retrospective descriptive study (timing N/A
[21] USA After-hours Calls in Hospice and Who is of calls, reasons for call and
Palliative Care contacting predominant nursing intervention
offered)
Keall 2020 [41] Extended-hours palliative care service Time of contact Data collected during service Yes. Outcomes: staying at home or
Australia with a hospital-avoidance and Who is improvement pilot of extended hours preferred place of care, avoiding acute
enhanced-care approach: report of a contacting palliative care service on admissions (to hospitalisation.
quality improvement project. palliative care unit), nurse’s assessment Extended hours palliative care service,
of whether acute hospital admission compared with usual care, showed an
avoided and telephone call log. almost 50% decrease in acute
hospitalisation, nearly doubled after-
hours palliative care unit admission and
17% increase in patients staying in their
own home.
Klarare et al (2017) Experiences of security and continuity Number & Qualitative study -accounts of episodes N/A
[42] Sweden of care: Patients’ and families’ narratives background of of out-of-hours care
about the work of specialized palliative HCPs
home care teams
Kristianson et al Evaluation of a night respite community Number & Action research with some cost data Yes. There is evidence that patients who
(2004) [43] palliative care service background of collected, also number of night respite would have been transferred to an
Australia HCPs shifts required, place of death inpatient setting for end-of-life care were
able to die at home with the support of
the night respite service. Families were
extremely appreciative of the service and
a limited cost comparison suggested costs
were lower than if patients had been
transferred to hospital and/or inpatient
hospice care.
Marshall et al Enhancing family physician capacity to Who is Description of programme development N/A
(2008) [44] Canada deliver quality palliative home care: An contacting
end-of-life, shared-care model Number &
background of
HCPs
Masso et al (2007) GAPS revisited: follow up evaluation of Type of contact Service audit, descriptive N/A
[45] Australia an Australian rural palliative care service
Middleton-Green ‘A Friend in the Corner’: supporting Time of contact Evaluation of ‘Gold Line’, 24/7 nurse- No, evaluation was descriptive. However,
et al (2016) [46] people at home in the last year of life via led telephone and video consultation claim ‘98.5% of calls resulted in patients
UK telephone and video consultation—an support service for patients in last year remaining in their place of residence’.
evaluation of life
Phillips et al (2008) Supporting patients and their caregiver’s Time of contact Evaluation (documentary analysis and No, but concluded that ‘acceptable
[47] Australia after-hours at the end of life: the role of Who is qualitative interviews) palliative care advice can be provided by
telephone support. contacting generalist nurses in a cost efficient
manner’ and a range of initiatives set up
as a result
Plummer et al Reviewing a new model for delivering Number & Service evaluation (audit and N/A
(2006) [48] UK short-term specialist palliative care at background of questionnaire)
home HCPs
Riolf 2014 [49] Effectiveness of palliative home-care Number & Retrospective controlled cohort and Yes. Reducing hospital admissions:
Italy services in reducing hospital admissions background of case control study patients enrolled for the palliative care
and determinants of hospitalization for HCPs programme were more likely to die at
terminally ill patients followed up by a home and fewer hospital stays and
palliative home-care team: A shorter stays in their last two months of
retrospective cohort study life compared with those who were not
taken onto the programme.
(Continued )

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Table 1. (Continued)

First author, Study title Data included Design and content Reported association with positive
publication date on out of hours outcomes?
and country. care
Rosenquist (1999) Optimizing hospital-based home care Number & Retrospective document analysis Outcomes not recorded but ‘results
[50] Sweden for dying cancer patients: a population- background of looking at place of death and hospital- showed that a higher home death rate
based study. HCPs based home care (and reasons for not could be achieved if effective hospital
having hospital based home care) based home care were offered (and
accepted)’
Shabnam et al 24/7 palliative care telephone Who is Descriptive analysis of telephone calls N/A
(2018) [51] consultation service in Bangladesh: A contacting and group interview with five palliative
Bangladesh descriptive mixed method study - They Number & care physicians.
know that we are with them background of
HCPs
Wilkes et al (2004) Evaluation of an after-hours telephone Number & Descriptive evaluation (audit of calls, N/A
[52] Australia support service for rural palliative care background of text analysis of reflective journals,
patients and their families: A pilot study HCPs questionnaire and interviews)
Worth et al. (2006) Out-of-hours palliative care: A Type of contact Qualitative study: interviews with N/A
[1] Scotland qualitative study of cancer patients, patients who had used out-of-hours
carers and professionals services and/or their carers; focus
groups with patients and carers and
telephone interviews with their general
practitioners and other professionals

Key:
Time of contact = When do patients/families/health care professionals use out-of-hours services?
Who is contacting = Who is contacting the out-of-hours services?
Type of contact = Is it a telephone call, centre visit or a home visit?
Number & background of healthcare professionals (HCPs) = How many healthcare professionals are on duty? And what are their backgrounds?

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Results
From 64 papers included in the original review [22], 31 reported data on use of out-of-hours
services from ten different countries (Table 1). 33 provided no information on the use of ser-
vices, and were therefore excluded from the analysis. Over half the studies reported on the
number and background of healthcare professionals on duty (n = 17) (S4 Table), with fewer
reporting on who contacted the service (n = 12) (S2 Table), time of contact (n = 10) (S1 Table),
and the type of contact (n = 8) (S3 Table). Detailed analysis on patterns of service use is
reported in supplementary material (S1–S4 Tables). The papers report a range of methods,
and few report outcomes, and only four report outcomes associated with extended or out-of-
hours service provision [28, 30, 41, 43].

Overview of included studies

1. When do patients/families/health care professionals need out-of-hours services?.
Ten papers provided data about the time of contact. Five papers reported the highest use of
out-of-hours services as in the evenings, particularly between 5pm-12pm [21, 26, 28, 29, 47].
Three of these papers referred to specific out-of-hours services and two papers referred to 24/7
services. Jiang et al (2012) reported that 31.1% (n = 1,381) of calls occurred at the weekend
(the second most busy time out-of-hours in this study) [21]. However, Dore (2018) reported
that for an out-of-hours GP service, weekends were the busiest time for interactions with palli-
ative patients, and that the distribution of contacts over the weekend was evenly spread from
midnight to 9pm [38]. Keall (2023) reported that for an extended hours community palliative

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

care service, peak times were at weekends between 10am and 1pm and Saturdays were busier
than Sundays [41].
Three studies based on 24/7 services showed that out-of-hours calls made up a substantial
proportion of all calls to the services [29, 41, 46]. Middleton-Green et al (2016) report that the
majority of the calls were made out-of-hours (69%, n = 3523), whilst Baldry and Palmer (2000)
report that nearly half of all calls were out-of-hours calls (48%, n = 211).
2. Who is contacting the out-of-hours services?. Twelve papers provided results for who
contacted out-of-hours services, and this included patients, families, and healthcare profession-
als. Four papers referred to specific out-of-hours services and eight papers referred to 24/7 ser-
vices. Family members and carers were the most frequent contacters of out-of-hours services.
Seven studies out of the eleven which compared the different groups contacting the out-of-
hours services showed that this group were the most frequent [28, 29, 34, 35, 41, 47, 51]. Six
studies showed more than 60% of all calls were from family members or carers, with two studies
showing as much as 80% of all contacts being from family members or carers [47, 51]. Further-
more, three studies showed that family members and patients together formed the majority of
callers attributing this group to 57.1%, 59% and 79% of all calls, respectively [21, 41, 44].
Healthcare professionals were the most frequent contacts in one study where, out of all
incoming and outgoing calls, 56% (n = 838) of calls were with healthcare staff including gener-
alists and 42% (n = 636) with family and carers [32]. In a further study of a palliative medicine
telephone hotline for generalists caring for community patients, most calls (43%) came from
physicians, with 22% from registered nurses, 15% from nurse practitioners and 6% from phar-
macists [36].
3. Is it a telephone call, centre visit or a home visit?. Eight papers provided results on
the type of contact reported following a call to out-of-hours services: follow up by telephone,
or a home visit, or the patient visiting a service centre out-of-hours.
Of the three papers which reported on the proportion of type of follow up after a phone
call, home visits were the most common in two studies. In a retrospective study of all palliative
care telephone calls to an out-of-hours GP co-operative over a one year period (2005 to 2006)
53% of calls (n = 551) resulted in a home visit and just 0.9% (n = 9) in a centre visit [30]. In
two other retrospective studies of community palliative care services (analysing data collected
in 1996/97 and 2003 to 2007), 40% (n = 251) and 52.1% (n = 325) of calls respectively resulted
in home visits [26, 45]. One paper analysed patient interactions with an out-of-hours GP ser-
vice over one year. Palliative care made up 11.4% of the total out-of-hours GP home visits for
this service, or161 interactions with palliative patients. Of these, 114 were home visits [38].
Of the four papers which reported on type of subsequent contact, by proportion of all con-
tacts, home visits were the most common in three studies. In a retrospective study in a primary
care out-of-hours department, out of 950 individual patient consultations, 71.3% were home
visits, 22.3% were telephone consultations and 6.4% were centre visits [24]. In addition, in an
out-of-hours qualitative study 78% (n = 25) of contacts were home visits. In a 24/7 specialist
advisory service 84% (n = 178) were telephone calls [29].
One study showed differences in types of consultation in patients within 30 days of death
and patients not within 30 days of death [31]. In patients within 30 days of death (n = 2661),
home visits were the most common at 55.8% of contacts, 4.2% were centre visits and 39.9%
were telephone calls. In patients not within 30 days of death (n = 100,216), centre visits were
the most common at 55.8%, 9.7% of contacts were home visits and 34.3% were telephone calls.
In a paper that analysed out-of-hours contacts with GPs, 55% of patients who received home
visits were judged to be within 48 hours of death [38] No indication was given of an association
between home visits and outcomes for patients.

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

4. How many healthcare professionals are on duty? And what are their backgrounds?.
Of the17 studies which reported the backgrounds of the staff delivering care out of hours, 14
studies reported staff from specialist palliative care services and two reported integrated spe-
cialist and generalist services. Eight studies reported services led by specialist nurses in pallia-
tive care and did not report whether there was access to a specialist medical doctor/consultant
[26, 31, 32, 39, 42, 47, 49, 51]. Six studies had at least one specialist medical doctor as part of
the service team [24, 35, 36, 43, 48, 50] and thirteen studies with at least one specialist nurse
[25, 27, 32–34, 36, 37, 40, 42, 44, 48, 50, 52]. No data were collected on outcomes for patients
in relation to professional background of the service team.
5. Reported outcomes. Although a number of papers reported outcomes associated with
the service described they did not specify whether these were associated with the out-of-hours
component of the service. However, there were four papers which reported outcomes for ser-
vices set up specifically to provide out-of-hours or extended hours support for palliative
patients [28, 30, 41, 43]. Baird-Bower (2016) reported that patients who engaged with the after
hours telephone service were less likely to contact the ambulance service or present at the
emergency department than patient who had never called out of hours. An analysis of shared
records in out-of-hours GP co-operatives showed that when information was shared patients
were referred to hospital less often [30]. An extended hours palliative care service, compared
with usual care, showed an almost 50% decrease in acute hospitalisation and 17% increase in
patients staying in their own home [41]. An evaluation of a night respite community palliative
care service suggested that there is evidenced that the service enabled patients to die at home
and that the healthcare costs were lower for these patients [43].

Discussion
This review sought to understand the use of out-of-hours palliative care services in the com-
munity, to inform the design of services. The findings demonstrate that overall, out-of-hours
palliative care services were most used in the evenings, especially on weekdays. This finding
was particularly evidenced in studies of 24/7-hour services (which include in-hours service)
emphasizing the extra demand during evenings, the requirement for out-of-hours services,
and the implications for planning ahead by ‘in-hours’ services. The review findings show that
family members and carers were the most frequent callers of out-of-hour services, as indicated
by more than half the included studies which reported on caller identity. This evidence does
not, however, tell us about those who do not access out-of-hours services despite need, or who
are put off. Previous research shows that some patients and carers find out-of-hours care diffi-
cult to access, for example not knowing who to call, or finding the triage process challenging.
Patients and carers can also be hesitant to call, worrying about the legitimacy of their need [1].
Our original systematic review of models of out-of-hours services [22] found improved
patient outcomes for community out-of- hours services provided 24/7 by specialist palliative
care services offering both hands-on clinical care and advisory care. However, resources are
limited, notably workforce shortages, meaning that this model is not always feasible. There-
fore, understanding more about the evidence on patterns of service use is important. The time
of greatest use is an important aspect to consider in the design of services. It is interesting that
evenings were apparently usually busier than weekends (as shown in studies from Australia,
USA and UK). We know from other research that symptom control, in particular pain control
is a main reason for contacting services out-of-hours [24], but it would be helpful to record
systematically the reasons behind the calls when collecting out-of-hours data in future. The
studies which reported length of time of contact were all focused on telephone calls, with none
specifically on home visits. Further research into the frequency of home visits would help

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

planning and allocation of time for potential unscheduled visits. In light of this, commissioners
and service providers should ensure that adequate telephone services (for advice and to assess
whether a visit is needed) are available and sufficient at these times. Moreover, other studies
have advocated offering proactive evening telephone calls, especially for frequent service users
or for patients with persistent symptoms, with the aim of minimizing problems and reducing
the need for home visits during the night [21, 26].
Out-of-hours services for palliative patients should be designed with careful consideration
of the needs of family carers. Services should provide clear contact details and provide infor-
mation on how to use the services appropriately, reducing anxiety for patients and carers.
In relation to our four research questions, some patterns of use were less clear. The type of
contact was highly varied between studies, not always reported, and it is therefore difficult to
draw any conclusions. Some studies reported only the type of contact following the first call,
whereas others reported on the type of contact overall. Furthermore, no studies reported on
whether home/telephone visits met the patient’s need or not, making it difficult to make mean-
ingful comparisons across evidence. Future studies looking at patient outcomes and patient
experience following out-of-hours contact would be beneficial to assess the meeting of
patients’ needs and to provide more context on service use. The number and ratio of different
healthcare professionals providing out-of-hours services varied among the included studies
and was difficult to elucidate. An interesting finding was that a number of studies reported no
doctor as part of the palliative care team. Doctors have an important role in the coordination
of care, continuity of care and accessing of prescriptions [53], although nurse prescriber roles
may assist with this. The implications of not having access to a doctor on service provision and
quality of care is not known.
Finally, most of the studies were descriptive and the evidence presented in terms of out-
comes for patients was limited. Where positive outcomes were reported, there was no detailed
information on whether these were associated with, for example, the professional backgrounds
of the staff providing the service, or whether the outcomes varied according to whether the
interaction was a telephone call or a home visit.

Strengths and limitations

This review examined the available international data on the use of out-of-hours community
palliative care services and makes clear recommendations for service design. Provision of com-
munity and primary care varies widely depending on health care systems, but it is possible to
see that there are similar patterns across countries (such as the times when patients and fami-
lies need services), and recommendations such as involving patients and families in service
design hold true everywhere. Results of this study should be interpreted in the light of several
limitations. First, although studies were carefully and systematically selected, the evidence was
of varying quality, and differently collected and described, which made the synthesis of some
findings difficult. Secondly, the majority of the studies included in this review were not recent
and were pre-COVID-19. A UK based study on end-of-life care showed services adapted rap-
idly to the pandemic: there was an increased need and provision of care, particularly in face to
face visits by community nurses with patients choosing to remain at home rather than being
admitted to hospital [54]. There were also changes to work patterns due to symptom manage-
ment and staff shortages. Therefore, this should be taken into consideration in the interpreta-
tion of findings.

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

Conclusion
This review provides a synthesis of the current evidence available on service utilisation out-of-
hours by people receiving palliative care in the community. The review identified that family
carers are the most likely to contact out-of-hours service and therefore services should be
designed with consideration to the specific needs of family carers. Out-of-hours services are
provided by a range of services and provision is multi-professional, it is vital to ensure these
services are well equipped with enhanced resources in the evenings to ensure out-of-hours ser-
vices are well equipped. This review also highlights areas for further research in this field, and
for the need for more comprehensive and systematic collection of data on out-of-hours service
use. The findings from this review have demonstrated the need for out-of-hours service and
provide valuable recommendations to commissioners and service providers. These can be
used to improve the provision and delivery of current community-based out-of-hours pallia-
tive care services and facilitate care towards the end of life.

Recommendations
When commissioning and designing out-of-hours palliative care services, consideration
should be given to:
• Ensure services increase provision of out-of-hours services between 5pm and midnight to
reflect the increased use at these times.
• Ensure that family and carers are provided with clear contact details for out-of hours
support.
• Ensure patient records can be easily accessed by health professionals responding to calls,
making the triage process easier.
• Listen to patients, family and carers in the design of out-of-hours services, including tele-
phone services.
• Collect data systematically on out-of-hours-service use and on outcomes for patients who
use the service.

Supporting information
S1 Table. Summary of studies reporting the time of contact of out-of-hours services.
(DOCX)
S2 Table. Summary of studies reporting who is contacting out-of-hours services.
(DOCX)
S3 Table. Summary of studies reporting the type of contact.
(DOCX)
S4 Table. Summary of studies reporting the number & background of HCPs.
(DOCX)
S1 Checklist. PRISMA checklist.
(DOCX)

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PLOS ONE Understanding patient and family utilisation of community-based palliative care services out-of-hours

Author Contributions
Conceptualization: Joanna Goodrich, Caleb Watson, Catherine Evans, Alice Firth,
Fliss E.M. Murtagh.
Formal analysis: Caleb Watson, Inez Gaczkowska.
Project administration: Inez Gaczkowska.
Supervision: Joanna Goodrich, Alice Firth, Fliss E.M. Murtagh.
Writing – original draft: Caleb Watson.
Writing – review & editing: Joanna Goodrich, Inez Gaczkowska, Richard Harding,
Catherine Evans, Alice Firth, Fliss E.M. Murtagh.

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