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Nursing management of people experiencing homelessness at the end of life

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evidence & practice / CPD / end of life care
HOMELESSNESS
Nursing management of people
experiencing homelessness at the
end of life
NS932 Webb WA, Mitchell T, Nyatanga B et al (2018) Nursing management of people experiencing homelessness at the end of life.
Nursing Standard. 32, 27, 53-62. Date of submission: 19 November 2017; date of acceptance: 11 January 2018. doi: 10.7748/ns.2018.e11070
Wendy Ann Webb
Queen’s nurse, doctoral
student, Institute of
Health and Society,
St John’s Campus,
University of Worcester,
Worcester, England
Theresa Mitchell
Associate professor
of nursing, Institute of
Health and Society,
St John’s Campus,
University of Worcester,
Worcester, England
Brian Nyatanga
Senior lecturer, Institute
of Health and Society,
St John’s Campus,
University of Worcester,
Worcester, England
Paul Snelling
Principal lecturer in
adult nursing, Institute
of Health and Society,
St John’s Campus,
University of Worcester,
Worcester, England
Correspondence
wendy@registerednurses
.com
Conflict of interest
None declared
nursingstandard.com
Abstract
Homelessness is a complex and multidimensional issue often involving a combination
of personal vulnerability, the limitations of social housing, and inadequacies in welfare
support. Providing palliative and end-of-life care to people experiencing homelessness is
challenging, both to individuals receiving care and nurses aiming to meet their complex
needs. This article discusses what is understood by the concept of ‘homelessness’ and
examines the barriers to accessing effective healthcare for people who are homeless
and have life-limiting conditions. The authors review the research into end of life care for
people experiencing homelessness and identify areas for further investigation, notably
the lack of evidence regarding the end of life care priorities of these individuals. There is a
focus on the availability of healthcare services for people who are homeless at the end of
life, as well as the factors that should be considered if evidence-based healthcare services
for this group of people are to be improved in the future.
Keywords
alcohol misuse, drug misuse, end of life care, healthcare inequalities, homelessness,
inclusion, mental health, palliative care, social exclusion
Aims and intended learning Relevance to The Code
outcomes Nurses are encouraged to apply the
The aim of this article is to enable nurses four themes of The Code: Professional
to understand the complexities around Standards or Practice and Behaviour for
providing end of life care for people Nurses and Midwives to their professional
experiencing homelessness. After reading practice (Nursing and Midwifery Council
this article and completing the time out (NMC) 2015). The themes are: Prioritise
activities you should be able to: people, Practise effectively, Preserve safety,
»» Explain how homelessness affects and Promote professionalism and trust.
people’s health and end of life care. This article relates to The Code in the
»» Identify methods of supporting following ways:
people who are homeless and may be »» It states that nurses must consider
approaching the end of life. the holistic end of life care needs of
»» Discuss the importance of people experiencing homelessness. The
interprofessional working when Code states that nurses must ensure
providing palliative and end of life care that people’s physical, social and
for people who are homeless. psychological needs are met.
»» Recognise local and national resources »» The Code states that nurses should treat
to support nurses involved in the care of people as individuals and uphold their
people experiencing homelessness who dignity. This article encourages nurses to
are approaching the end of life. reflect on the inequalities associated with
volume 32 number 27 / 28 February 2018 / 53
evidence & practice / CPD / end of life care
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Acknowledgements
The primary author has
received funding for
her PhD study through
a Florence Nightingale
Foundation Research
Scholarship, made
possible through the
generosity of The Band
Trust. However, the
funders have had no role
in study design, data
collection and analysis,
decision to publish, or
preparation of this article.
54 / 28 February 2018 / volume 32 number 27
end of life care services for people who
are homeless and ensure that they receive
individualised care that promotes dignity
at the end of life.
»» Nurses are encouraged to practise
effectively by improving their
understanding of the challenges involved
in providing palliative and end of life
care to people who are homeless.
»» The Code states that nurses should
act in partnership with those receiving
care, assisting them to access relevant
information and support when they
need it. This article encourages nurses
to reflect on local, regional and national
sources of support when caring for
people who are homeless and receiving
end of life care.
Introduction
Palliative care is a crucial element of
end of life care and involves a holistic,
multidisciplinary approach to the care of
people with life-limiting conditions such as
cancer or advanced liver disease. It focuses
on improving quality of life, the prevention
and relief of pain, and reducing the effects
of life-limiting conditions on people’s
physical, psychosocial and spiritual well-
being (National Institute for Health and
Care Excellence (NICE) 2004). People living
with progressive, incurable and life-limiting
diseases often require palliative care for
several years before they reach the end of life.
Mortality rates are significantly higher
among the homeless population and
research demonstrates a clear link between
chronic homelessness and complex health
needs, advanced illness and premature death
(Hwang 2001, Riley et al 2003, The Faculty
for Homeless and Inclusion Health 2013).
The average age of death is 47 years for men
who are homeless and 43 years for women
who are homeless, compared with 77 years
for the general population (Thomas 2011).
Furthermore, when people who are homeless
die, it is often not as a direct result of factors
involved in homelessness such as exposure to
cold weather; research has found that death
among people experiencing homelessness
is often caused by advanced liver disease,
respiratory and cardiac disease, blood-borne
infections such as human immunodeficiency
virus and hepatitis, and alcohol and drug-
related complications (The Faculty for
Homeless and Inclusion Health 2013).
While it is acknowledged that there is
some debate around how best to refer
to the homeless population, this article
refers to both homeless people and people
experiencing homelessness for ease of
reading.
End of life care
There is debate around the exact
interpretation of end of life care. The
National Council for Palliative Care
(NCPC) (2011) describes end of life care
as that provided to people who are likely
to die within the following 12 months.
However, from the authors’ experience,
many healthcare professionals who provide
palliative care would argue that end of life
care usually refers to the last six weeks
of life, particularly when applying for
fast-track continuing healthcare funding
for end of life care in the community
(NHS Choices 2018a).
In recent years, national policy and
government funding have strengthened
the provision of dignity at the end of
life, promoting individual choice and
supporting advance decisions about people’s
end of life care preferences, for example
identifying the individual’s preferred place
of care (Department of Health (DH) 2011,
Hughes-Hallett et al 2011, The Choice in
End of Life Care Programme Board 2015).
Several palliative care guidelines have also
been developed, which focus on improving
choice and quality of care, enhancing service
provision and achieving positive outcomes
in terms of an optimal death for patients
receiving palliative care, wherever they
choose to die (DH 2008, 2009, 2010a, The
Choice in End of Life Care Programme
Board 2015). Furthermore, both palliative
and end of life care should be universally
accessible, inclusive and readily available
at the point of need wherever the person
may be and irrespective of socio-economic
deprivation (DH 2008, 2009). However,
some of the vulnerable and marginalised
groups of society, including homeless
people, do not access the palliative and
end of life care services they require
nursingstandard.com

(Stienstra and Chochinov 2012, Care
Quality Commission (CQC) 2016a, 2017,
Hudson et al 2016).
Homelessness as a barrier to
healthcare
While homelessness was previously
considered a social welfare and housing
issue, it is now understood to be a
complex, multidimensional challenge,
which, according to The Faculty for
Homeless and Inclusion Health (2013),
is ‘a community problem, needing a
community solution’. The origins of
homelessness are multifaceted and often
deep-rooted; similarly, an individual’s route
into homelessness can be diverse. However,
most episodes of homelessness result from
a combination of personal vulnerability,
the limitations of social housing, and
inadequacies in welfare administration and
support. There are several risk factors for
homelessness as identified in Box 1.
Despite statistics that indicate that the
number of homeless people is rising, they
are still described as ‘a hidden population’
(NHS Improving Quality 2014), who often
report ‘feeling invisible’ (DH 2010b). While
it is challenging to calculate exact figures
for homelessness in the UK because of
difficulty defining the term ‘homeless’, Crisis
(2016), the national charity for homeless
people, reports a 132% rise in the number
of homeless people in England since 2010.
However, this figure relates specifically to
people who are sleeping on the streets and
there are several definitions of homelessness,
which adds to the complexity of providing
accurate statistics. The media, for example,
tends to equate homelessness with sleeping
‘rough’. However, homelessness includes
those who are sleeping on the streets;
squatting illegally; ‘sofa-surfing’; living
in bed and breakfast accommodation,
hostels, women’s refuges or other temporary
accommodation; and those who are simply
deemed to be unsuitably housed.
TIME OUT 1
Reflect on your understanding of the term ‘homelessness’.
Would you consider this to be a person who lives on the
streets? Reflect on the wider definition provided in this
article and how this may contrast with your definition.
nursingstandard.com
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evidenceandpractice.nursingstandard.com
Marginalisation and social exclusion KEY POINT
Marginalised or socially excluded people are The origins of
considered to exist outside the mainstream homelessness are
of society (DH 2010b). They have been multifaceted and often
described as individuals who ‘lack a voice or deep-rooted; similarly,
influence’ (Atkinson 2009), or who have a an individual’s route into
‘limited “voice” that can be overshadowed homelessness can be
by other, more vocal groups’ (DH 2010a). diverse. However, most
The DH (2010b) readily acknowledged that episodes of homelessness
marginalised people, including those who result from a combination
are homeless, can have complex needs and of personal vulnerability,
unconventional lifestyles, which in turn can the limitations of social
create significant barriers to navigating the housing, and inadequacies
healthcare system and accessing appropriate in welfare administration
services (DH 2010a, 2010b, McNeil et al and support
2012a). The literature concerning healthcare
provision for homeless people focuses
primarily on perceived and actual barriers
to accessing healthcare (DH 2010a,
2010b, Hewett and Halligan 2010, Elwell-
Sutton et al 2016) (Box 2). Furthermore,
there is a stigma concerning homelessness
among healthcare staff, and it has been
acknowledged that homeless people are
frequently characterised as non-compliant
and viewed as unreliable (NHS Improving
Quality 2014).
Homeless people report to emergency
departments on average five times more
frequently than the general population
(DH 2010b). They are also eight times more
likely to have an acute hospital admission
than the average person (DH 2010b). This
is because homeless people often access
emergency care rather than traditional
primary and preventative healthcare services
BOX 1. Risk factors for homelessness
»» Alcohol misuse
»» Child abuse
»» Criminal record
»» Debt
»» Disturbed childhood
»» Drug misuse
»» Growing up in care
»» Imprisonment
»» Lack of a social support network
»» Low educational attainment
»» Mental health issues
»» Poverty
»» Suboptimal social skills
»» Transient employment
(Webb 2017)
volume 32 number 27 / 28 February 2018 / 55
evidence & practice / CPD / end of life care
KEY POINT because there are significantly fewer barriers
In a survey of homeless to accessing emergency care. For example,
people in England, complex emergency care is universally available and
or multiple needs, which can be accessed at any time of the day or
include drug and/or night, regardless of whether the individual
alcohol-related issues, has an appointment or documents such as
offending history, and personal identification or proof of address.
mental health issues,
affected 33% of the TIME OUT 2
321 respondents Consider Box 2, which details various barriers to accessing
(Homeless Link 2016a) healthcare for homeless people. Select four of these
barriers and, using the information included in this article,
explore the steps that could be taken to provide patients
who are homeless with improved access to end of life care.
Tri-morbidity
Tri-morbidity is a commonly used term in
the area of inclusion health and includes
suboptimal physical health, substance misuse
and mental health issues (DH 2010a, Webb
2017, Shulman et al 2018). Tri-morbidity is
often the result of a combination of factors
including a history of complex trauma,
abuse, adverse childhood experiences
and neglect. These factors have an effect
BOX 2. Barriers to accessing
healthcare for people experiencing
homelessness
»» Competing priorities, for example the homeless
person’s need for food, alcohol or drugs and the cost
of travel to hospital appointments, zero-tolerance drug
policies (Shulman et al 2018)
»» Complex needs (Hudson et al 2016)
»» Negative previous experience of healthcare services
(Department of Health (DH) 2010b, Krakowsky et al 2013,
Webb 2015, Hudson et al 2016)
»» Lack of trust in authority and/or healthcare providers
(Webb 2015)
»» Lack of continuity and interruptions to care (DH 2010b)
»» High levels of drug misuse (McNeil Guirguis-Younger
2012a)
»» Mental health issues (DH 2010b)
»» Inflexible healthcare processes and/or appointment
systems and non-attendance (Dorney-Smith et al 2016)
»» Prognosis-driven healthcare, referral-based system
of access to specialist palliative care in the UK
(Hudson et al 2016)
»» Healthcare professionals’ limited understanding of the
specific needs of homeless people (DH 2010a)
»» Transport and other costs (DH 2010b)
»» Communication, language and literacy issues
(Marie Curie 2016)
»» Discrimination and/or myth that hospices are for
‘middle-class’ people only (McNeil et al 2012a)
56 / 28 February 2018 / volume 32 number 27
on childhood developmental trajectories
and mental health. Tri-morbidity is often
associated with homelessness and has a
significant effect on quality of life and life
expectancy (The Faculty for Homeless
and Inclusion Health 2013). In a survey of
homeless people in England, complex or
multiple needs, which include drug and/or
alcohol-related issues, offending history, and
mental health issues, affected 33% of the
321 respondents (Homeless Link 2016a).
For some people, mental health issues
are the route into homelessness. Common
mental health issues, such as depression,
anxiety, obsessive-compulsive disorder
and panic disorder, are twice as common
in homeless people than in the general
population, while homeless people are up to
15 times more likely to experience psychoses
than the general population (Rees 2009).
Once people become homeless, they often
develop physical illnesses such as chronic
respiratory conditions, inflammatory skin
conditions and musculoskeletal conditions,
with homelessness frequently referred to as
the ‘silent killer’ (Thomas 2011).
Drug and alcohol dependence can
also lead to homelessness. The Homeless
Link (2016a) found that 31% of the 312
respondents had drug-related issues, 23% of
respondents had alcohol-related issues and
10% of respondents admitted to using
so-called ‘legal highs’ such as Spice and
Black Mamba; these are no longer legal
and are referred to as new psychoactive
substances (Homeless Link 2016a).
Homeless people are also often reluctant
to access planned care, possibly because
during previous clinical encounters they
have experienced varying levels of suspicion,
indifference and even hostility, rather than
dignity or respect (The Faculty for Homeless
and Inclusion Health 2013). As a result,
homeless people may also experience a
lack of self-worth and have minimal health
aspirations. They may place a low priority
on health when they also have to negotiate
poverty and a day-to-day struggle for
survival (Rees 2009).
Challenges to the provision of end of
life care
In 2016, the CQC (2016a) produced a
nursingstandard.com

report detailing the ongoing inequalities
in end-of-life care experienced by some
marginalised groups in society, including
homeless people. The report acknowledged
that healthcare services in the UK were
not providing ‘the good, personalised care’
(CQC 2016a) that homeless people should
expect at the end of life.
Meeting the end of life care needs of
people who have higher-than-average
prevalence of addiction and mental health
issues, and who live in environments
that are not generally considered to be
conducive to palliative care, is challenging
(Podymow et al 2006). There is substantial
evidence of the complexities involved in
providing palliative and end of life care
to homeless people (CQC 2016a, 2017,
Håkanson et al 2016, Hudson et al 2016).
Some of these complexities are obvious,
for example the lack of a postal address
for letters to be sent regarding hospital
appointments. Other complexities are
less clear, for example low self-esteem
preventing a homeless person seeking
assistance with physical symptoms,
or their chaotic lifestyles leading to
missed appointments. However, these
complexities must be addressed if
person-centred palliative and end of life
care is to be provided to homeless people
(NHS Improving Quality 2014, CQC
2016a, 2017).
Much of the research around the
challenges of providing end of life care to
homeless people relates to the barriers they
experience in accessing healthcare services,
for example the perceived prejudice of
healthcare staff, homeless people’s mistrust
of healthcare providers and inflexible
policies regarding illicit drug use (Collier
2011, Krakowsky et al 2013, Hudson et al
2016). The most significant barrier is
arguably the lack of awareness of the needs
of homeless people with advanced ill-health
(CQC 2017). However, specific research
into the needs of homeless people and end
of life care is sparse.
Song et al (2007) concluded that end of
life care in the US could be perceived as
paternalistic and unresponsive to the needs
of homeless people, and identified several
unique concerns of homeless people in the
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US, for example dying anonymously and KEY POINT
what would happen to their body after Meeting the end of life
death. Tobey et al (2017) also found that care needs of people who
homeless people were anxious about dying have higher-than-average
anonymously; however, they also found prevalence of addiction
that many homeless people in the US were and mental health
concerned about the effect that care at the issues, and who live in
end of life might have on their freedom, and environments that are not
that they might find themselves ‘trapped’ in generally considered to
an inpatient facility. A study by Webb et al be conducive to palliative
(2017) suggested that homeless people in the care, is challenging
UK also have concerns about the disposal (Podymow et al 2006)
of their body, while Shulman et al (2018)
revealed a dearth of specialist person-centred
services for homeless people with advanced
ill-health who misuse drugs and alcohol.
Shulman et al’s (2018) study outlined
the requirement for specialist training,
multidisciplinary working and collaboration
between services to provide appropriate end
of life care and support, including specialist
drug and alcohol services, for homeless
people with advanced ill-health.
TIME OUT 3
Consider the following case study. Bill is a 51-year-old
man with alcoholism. He has no next of kin and is a
resident in a local homeless shelter. He has become
increasingly jaundiced, has been bedbound for the
previous two weeks, and is complaining of a ‘sore bottom’.
He is too unwell to attend a GP surgery and refuses to go
to hospital. The GP reception staff will not book a home
visit, saying Bill is not eligible. Bill’s support workers are
not trained to provide any personal care or health advice;
however, they are concerned that Bill may be dying.
How would you respond in this situation? Consider the
following: would a lack of a formal diagnosis of terminal
illness be a barrier to Bill’s access to district nurse
services? Would the fact that Bill is 51 years old affect any
care decisions? Would you be willing to order a profiling
bed and pressure-relieving mattress for Bill despite his
lack of a permanent address?
Drug misuse and medicines
management
The term drug misuse includes illegal
drugs such as heroin or cocaine, as well
as prescription and over-the-counter
medicines used in palliative care such
as opioids for analgesia (Public Health
England 2017). The high incidence of
drug misuse among homeless people
compared with the general population
results in specific medicines management
volume 32 number 27 / 28 February 2018 / 57
evidence & practice / CPD / end of life care
KEY POINT challenges as homeless people approach the
The control of symptoms, end of life; for example, there is the risk
such as pain, anxiety and that prescription medicines will be stolen
breathlessness, using from homeless people or medicines may
medicines is an important be sold to pay for illegal drugs (McNeil
component of evidenced- and Guirguis-Younger 2012a, 2012b,
based palliative and end McNeil et al 2012a, 2012b). The control
of life care, and must be of symptoms, such as pain, anxiety and
managed appropriately breathlessness, using medicines is an
if homeless people are to important component of evidenced-based
access the same quality of palliative and end of life care, and must be
healthcare as the general managed appropriately if homeless people
public (NICE 2004) are to access the same quality of healthcare
as the general public (NICE 2004).
Public Health England (2017) outlined
the considerable geographical variation in
death rates from drug misuse, including
illegal and prescription drugs, with the
highest rates recorded in the North West
and North East regions and the lowest rates
in the East Midlands (Public Health England
2017). In England, health and social care
providers in Newcastle have produced a
comprehensive drugs management protocol
that aims to ensure that all NHS, social care
or police and probation staff working with
homeless people understand how to manage
medicines and any incidents involving drug
misuse (Newcastle City Council 2015,
Northumberland, Tyne and Wear NHS
Foundation Trust 2017).
Given that hostel staff are not permitted
to store or dispense controlled drugs, it is
recommended that hostels provide either
secure lockable cabinets in all bedrooms to
prevent overdose or theft, or, where there
are shared bedrooms and 24-hour waking
cover, a bank of secure lockable cabinets
in the main office with a digital key pad
that only individual residents can access;
it is recommended that a master key list
is kept by the organisation but not in the
same buildings (Newcastle City Council
2015). Newcastle City Council (2015) also
provided examples of optimal practice such
as hostel staff maintaining a record of the
dosage of any drug that a resident tells them
that they are taking, with the agreement of
the service user.
Homeless Link (2016b) provided
guidelines for managing medicines in
homelessness services, which includes advice
for nurses providing end of life care to
58 / 28 February 2018 / volume 32 number 27
people living in hostels, such as the use of
lockable cabinets. Nurses must remember
that each patient is an individual and, as
such, the risks of prescribing controlled
drugs in a hostel environment, such as theft
or overdose, should be weighed accordingly.
Open discussions between the GP,
community nurses and hostel staff may be
required when deciding how to provide the
appropriate medicines to homeless people
requiring end of life care.
Anyone using homelessness services
may have a chaotic daily routine, or
there may be significant issues within the
service’s premises that prevent the storage
or administration of controlled drugs.
However, pharmacies may be able to
assist with the supervised consumption of
prescribed controlled drugs; for example,
the use of monitored dosage systems and
pill organisers with alarms are worth
considering in this population group
(Homeless Link 2016b).
Alternatively, transdermal patches such
as fentanyl or buprenorphine patches
can be considered for pain relief in hostel
residents, negating the need for storage of
controlled drugs. These can be dispensed
one at a time, once or twice weekly, and
transported and administered by a visiting
community staff nurse. Registered nurses
may legally transport medicines, including
controlled drugs, where patients, their carers
or representatives are unable to collect
them ‘provided the registrant is conveying
the medication to a patient for whom the
medicinal product has been prescribed,
(for example, from a pharmacy to the
patient’s home)’ (NMC 2010). Local hospice
teams will be able to advise nurses on the
suitability of various immediate-release and
modified-release analgesia preparations and
the range of symptom-control medicines
available.
Collaborative working
Hostel-based care, with input from
palliative care and mental health teams,
and, where necessary, harm reduction
services (teams of healthcare professionals
who work with individuals and their
families to reduce the harm caused by drug
or alcohol misuse), is recommended as an
nursingstandard.com

appropriate method of providing palliative
care for homeless people (NHS Improving
Quality 2014, CQC 2017, Hudson et al
2017a). Furthermore, hostel workers
have been identified as resilient, creative,
compassionate and resourceful advocates,
who, with additional training, increased
support from healthcare professionals
in primary care and specialist palliative
care, and improved access to medical
information, are capable of coordinating
the management of homeless people at
the end of life (Webb 2015, CQC 2017,
Shulman et al 2018).
Effective hostel-based palliative
care requires clear communication
between service providers if it is to be
multidisciplinary and collaborative. It is
also necessary for anyone working with
homeless people at the end of life to be
aware of the various services available in
each locality and the important contacts
within each service. Any health and social
care staff should also receive training in
sensitive end of life care issues, for example
how to address homeless people’s concerns
about end of life, or the management of
toileting and personal hygiene when the
individual becomes less able to mobilise
independently (CQC 2016a).
Hospice education centres are specific
teaching departments located within
hospices and which provide educational
courses for hospice and non-hospice staff.
These centres are ideally placed to provide
short courses on advance care planning
(a care plan devised in collaboration with
the family and health and social care staff,
which details an individual’s future end of
life care priorities), as well as communication
skills for health and social care staff. There
are also online resources that provide
information on end of life care decisions;
these do not require specialist training and
can assist homeless people, family members,
and health and social care staff who do not
currently have access to a specialist palliative
care nurse but would like to develop an
advance care plan (Compassion in Dying
2014, CODA Alliance 2018, Macmillan
Cancer Support 2018, NHS Choices
2018b). Russell (2017) also provided a
comprehensive outline of online resources
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for advance care planning, which nurses can KEY POINT
direct patients and social care staff to. Staff working in hostels
Staff working in hostels for homeless for homeless people could
people could benefit from training in benefit from training in
areas that usually fall within the remit areas that usually fall
of the specialist palliative care nurse, within the remit of the
such as identifying deteriorating health specialist palliative care
and symptom control; similarly, primary nurse, such as identifying
care nurses and specialist palliative care deteriorating health and
nurses could benefit from training in drug symptom control; similarly,
misuse and mental health issues, as well as primary care nurses and
improving their knowledge of local drug specialist palliative care
and alcohol harm reduction services and nurses could benefit from
mental health crisis teams. Willingness to training in drug misuse and
work together and share expertise across mental health issues
professional boundaries is fundamental
if homeless people are to receive person-
centred palliative and end of life care.
Parallel planning
Hostels for homeless people usually
operate a recovery-focused system and
have a positive ethos, which promotes
optimal outcomes. Because of this,
conversations around end of life care
can be particularly challenging for hostel
staff and, in reality, they rarely take place
(Hudson et al 2017a, Shulman et al 2018).
The obvious result is that homeless people
in hostels are rarely referred to palliative
care services and have little opportunity
to discuss their concerns and preferences
for end of life care (CQC 2016a, 2016b).
Shulman et al (2018) recognised that while
arriving at a prognosis is challenging in
any population, it is even more so with
homeless people who often have coexisting
mental health and addiction issues,
which create further barriers to accessing
traditional palliative care services.
One way to address this potential
disconnect between services is the use
of parallel planning. The Choice in End
of Life Care Programme Board (2015),
which was commissioned to advise the
UK government on improving the quality
and experience of care for adults at the
end of life, described parallel planning as
‘greater joint working between palliative
care specialists and other clinical staff, and
between secondary care and primary care
staff, to identify people who may need end
of life care as early as possible’.
volume 32 number 27 / 28 February 2018 / 59
evidence & practice / CPD / end of life care

a temporary bed at the local hostel where staff have

Parallel planning is specifically
noticed that she has an open sore on her right breast
recommended for use with the homeless that she has been ignoring for months, but which is
population and provides a useful way of weeping significantly. The key worker took Rosana to
addressing the uncertainty surrounding the emergency department where she was told that
the health of homeless people (CQC 2017, she has a likely diagnosis of breast cancer, but Rosana
Hudson et al 2017a). In practice, this refused any tests and left. The district nursing team
involves triggering multidisciplinary support has visited Rosana at the hostel and are dressing the
when concerns are raised about a homeless fungating breast wound, but do not feel that the hostel is
person’s advanced ill-health (CQC 2017). an appropriate place for her ongoing care. Rosana insists
This bypasses the need for a formal terminal that she wants to die in the hostel. Consider the potential
barriers that would prevent Rosana from being allowed
diagnosis and a rigid medical prognosis.
to die in her preferred place of care. Can you think of a
Hudson et al (2017a, 2017b) outlined strategy that would overcome these obstacles?
the various stages likely to be involved in
parallel planning in the homeless population, Future developments
including: Hostel-based palliative care with input from
»» Identify those who may be approaching other specialist services is recommended
the end of life. as the optimal strategy for the provision
»» Collate information about the individual’s of culturally sensitive and accessible
wishes, concerns and options. palliative care for homeless people (NHS
»» Provide multidisciplinary support and Improving Quality 2014, CQC 2017,
regularly review any care plans. Hudson et al 2017a). However, the end
Box 3 provides a case study example of of life care priorities of homeless people
parallel planning in practice. are not fully understood and it cannot be
assumed that they reflect the priorities of the
TIME OUT 4 general population. Until further evidence
Consider the following case study. Rosana is 47 years is available, bringing outside expertise into
old and has been homeless for most of her life. She has hostels and primary care services remains
the optimal method of reaching individuals
BOX 3. Example of parallel planning in the homeless community who have
advanced ill-health and require a palliative
Sayed is 52 years old and has an undiagnosed chronic lung condition. He is a heavy smoker who
approach to care planning (Webb et al
also drinks three bottles of wine every day. He has been homeless periodically for 15 years following
his marriage breakdown. He has a bed at the large local hostel where his key worker, Matt, has 2017). Over a decade has passed since St
noticed that he is increasingly jaundiced, breathless and less able to undertake his activities of Mungo’s Hostel, a homelessness charity in
daily living. Sayed refuses to see any doctors in case they attempt to make him leave the hostel London, pioneered the role of the palliative
where he feels accepted. However, he is so breathless and unwell that he has started asking other care coordinator for homeless people,
residents to fetch his alcohol and sneak it into the hostel for him. This places him at risk of being which demonstrated improvements in the
asked to leave the hostel, which would mean he would be sleeping rough again. He has already experience of care for homeless people at
been seen by a member of the alcohol team with a view to engaging in a detox programme.
Matt is hoping that Sayed will stop drinking, but is worried Sayed may die in the next few
the end of life (Davis et al 2011).
months if he does not. The hostel has links with the district nursing team and the local hospice’s Following the CQC’s (2016a) report into
clinical nurse specialist, who is attached to the GP surgery. Matt arranges a meeting and invites inequalities in end of life care provision
the district nurse, the clinical nurse specialist and the specialist nurse from the alcohol team. for marginalised groups across the UK,
Together, they gather information about Sayed’s condition and his wishes, and discuss their healthcare providers and commissioners
individual professional roles and how they can work together to support Sayed. Also, by outlining began to audit end of life care services in
the challenges they may experience and the options available for Sayed, they begin to develop an attempt to address these inequalities.
preliminary plans, which will be reviewed on a regular basis, for example:
»» Sayed was to immediately commence an alcohol detox programme, with twice-weekly This led to several hospices employing
visits from the specialist detox team. community engagement officers, non-
»» The clinical nurse specialist from the local hospice planned weekly symptom control review clinical staff responsible for engaging
visits at the hostel. with community groups to widen access
»» The clinical nurse specialist alerted the local GP practice that Sayed was to be placed on the to services and encourage referrals from
palliative care register and the unplanned admission avoidance register. hard-to-reach groups such as homeless
»» Staff at the hostel commenced twice-daily well-being checks on Sayed. people. For example, St Luke’s Hospice
»» The district nurse team leader assessed the need for any specialist equipment, for example
a portable urinal for use at night.
in Cheshire employed a clinical nurse
specialist to work on a joint project with

60 / 28 February 2018 / volume 32 number 27 nursingstandard.com

 For related CPD articles visit
evidenceandpractice.nursingstandard.com

St Werburgh’s Medical Practice for the to accessing healthcare. Furthermore, tri-

Homeless to install a room for respite care
in the local homeless hostel (CQC 2017).
In Manchester, the Urban Village Medical
Practice provides specialist integrated care
for homeless people based on the Pathway
Model, an integrated practice model that
puts the homeless person at the centre of
care (The Health Foundation 2013, Dorney-
Smith et al 2016). The practice also employs
a specialist case manager who works across
primary and secondary care services to
coordinate and manage care across the
multidisciplinary team.
The CQC’s (2017) follow-up to its
2016 report provided further examples of
outstanding end of life care for homeless
people. For example, the Anchor Centre
in Leicester was commended for adopting
a non-judgemental approach that respects
homeless people’s individual decisions; this
removes barriers to care by abandoning
rules such as requiring clients to be free
from alcohol or other substances before
they are allowed to use certain services.
TIME OUT 5
Discuss the nursing management of homeless people
with colleagues who work in palliative and end of life
care. This might include a Macmillan specialist nurse
covering your hospital ward or the hospice clinical nurse
specialist attached to your local GP surgery. Collate
their views and use them to provide a teaching session
for your colleagues on how to overcome the barriers to
providing end of life care to homeless people.
morbidity – the combination of physical and
mental ill-health and drug or alcohol misuse
that is often associated with homelessness –
has a significant effect on quality of life and
life expectancy.
The lack of specialist services for homeless
people with advanced ill-health who misuse
drugs and alcohol is a major challenge in the
provision of person-centred end of life care.
In addition, rather than dignity and respect,
homeless people can experience suspicion,
ignorance, indifference and hostility from
healthcare staff. This means they are often
more comfortable in familiar hostel settings.
Collaborative working and holistic,
person-centred care are essential to
support and care for homeless people
approaching the end of life. Nurses can
make a significant contribution to this
area by increasing their knowledge of the
complex issues around homelessness and
end of life care, and by working with other
services that support homeless people. The
provision of timely, accessible and culturally
relevant end of life care for homeless people
is challenging; however, with a willingness
to work across disciplinary boundaries, the
challenges can be overcome.
TIME OUT 6
Nurses are encouraged to apply the four themes of
The Code (NMC 2015) to their professional practice.
Consider how knowledge of palliative and end of life
care for homeless people relates to The Code.

Conclusion TIME OUT 7

Homelessness is a complex multidimensional Now that you have completed the article you might like to
issue, which results in significant barriers write a reflective account as part of your revalidation.

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