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48 Chapter 4
All of this can take many forms and will be bespoke to
the individual patient, their families, the community in
which they live and the services available to them. Ensuring
these systems of support are interconnected and easily
signposted is vital.
A Structured Non-Biased Process or
Resource to Outline Local Services
Working together is important as is the recognition that
everyone is a service and everyone is a signpost. In order to
empower people and communities to understand where
and how to find help and support, commissioned and non-
commissioned resources should be mapped and shared as
a “directory of resources” for people and professionals to
easily access, by local areas. When an online resource is
generated this can include maximising shared community
spaces, such as social meeting spaces, places of worship,
parks and gardens, and hospices. It can involve disease
specific support groups, psychological and mental health
groups, other community clubs, sports groups, the library,
neighbours and religious organisations. The inter-con-
nectedness of these networks is upheld by the individuals
within these communities who bring their own experience
and skills, professional and non-professional; these may
include friends, neighbours, family, members of a support
group, counsellors, and religious leaders.
Education and Training
End-of-life care core skills education and training framework
was developed in partnership by Health Education England,
Skills for Health, and Skills for Care [50]. The framework
divides key skills and knowledge into three tiers to help
support the provision of high-quality, person-centred care
for terminal patients and their families. This guidance aims
to support employers to improve the consistency in training
and assessment of cross-sector multi-professionals.
The majority of end-of-life care in the community, is
and will be delivered by generalist staff, without specialist
palliative care qualifications [51]. Focussed multi-profes-
sional, end-of-life care education and training is undoubt-
ably essential to improve the delivery and experiences of
care as well as reduce inequalities. There are multiple chal-
lenges associated with delivering end-of-life care training
in a meaningful way to enable improved outcomes of
patients and families. High-quality training therefore
needs to be multifaceted in design and tailored to the needs
of staff. Organisational culture of person-centred end-of-
life care is another important consideration to enable
continued positive behaviour change.
End-of-Life Care for All (e-ELCA) is a freely accessible
e-learning programme aimed to enhance the training and
education of NHS staff, hospice workers and social care staff
as well as volunteers involved in delivering end-of-life care
[52]. The programme was commissioned by the Department
of Health to support the implementation of the Department
of Health’s 2008 national End-of-Life Care Strategy. The
modular online training format, allows participants to build
on their skills, at their own pace and relevant to their
learning needs, and is available to all generalist staff.
There is a plethora of training providers offering end-of-
life care training, for example local community training
hubs and hospices and training as well as national providers
such as charities and independent education providers.
Local Hospice Providers
Most hospices have training and education departments
and are fantastic sources of expertise and knowledge to
help build skills and confidence in community generalist
teams. Many have links with engagement and research
teams with the benefit of appraising end-of-life care
training outcomes. Working together to deliver training
programmes brings the advantage of building local rela-
tionships and shared understanding of system challenges
and opportunities.
National Providers
Recognised charities in end-of-life care, such as Marie
Curie, Sue Ryder, Macmillan, and Together for Short Lives,
are excellent hubs of knowledge and training for staff,
patients, and families. Disease specific, ageing-well and
bereavement-care charities also offer important resources
to support sign-posting, referral pathways and education
for staff and people within communities. (For further
detail on children and young people see Chapter 15:
Palliative care for infants, children and young people).
Recognised Palliative Care Education and
Training Certificates and Programmes
Many of these require funding either by commissioners or
directly by providers. These range from improving gener-
alist skills through to enabling those with a special interest
and specialist expertise.
Examples include:
• The European Certificate in Essential Palliative Care is a
respected qualification following an eight-week online
facilitated learning course for multi-professionals with
assessment by a reflective portfolio, examination and viva.
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Palliative Care in the Community 49
• The Cardiff University, Palliative Medicine for Health
Care Professionals, MSc – this in-depth course is over
three years as part-time distance learning.
•
The Gold Standards Framework (GSF) was developed in
1998 and played an important role in focusing and
improving end-of-life care in primary care. GSF principles
have been integrated within primary care, supported by
inclusion as part of the original GP Contract Quality
Outcomes Framework supporting the basic need for GP
practices to have palliative care registers and regular EOLC
multi-disciplinary team meetings. GSF have grown as an
independent end-of-life care training provider supporting
accreditation programmes to different sectors such as care
homes and hospitals. GSF continue to encourage providers
to improve end-of-life care, to provide more proactive per-
son-centred coordinated care, with more people identified
to be in their last year of life offered advance care planning
discussions and enabled to live well and die well in the
place and manner of their choosing with effective commu-
nication and collaboration with care home sector.
Developing Communities of Practice to
Support Peer Learning
Project ECHO is a worldwide movement providing an
online learning and support methodology. It supports
knowledge sharing between members from health and
social care professions and facilitates the exchange of spe-
cialist knowledge and best practice to help build skills and
confidence. Use of Project ECHO continues to grow in the
UK, supporting hospices and the wider palliative care sec-
tor to operate as effectively as possible [53].
Conclusion
We cannot direct the wind, but we can adjust the sails.
― Dolly Parton
Presently, the natural evolution of palliative care has
resulted in a system which is more individualistic rather
than population based. This is no bad thing in-and-of-
itself; however, it does have some consequences. Good
intentions have resulted in a predominate focus on the
dying individual (opposed to the wider needs of carers and
communities), is overly concerned with measurable out-
comes, e.g., pain measurement and preferred place of
death (opposed to framing how to shape healthy deaths
that develop positive, meaningful stories), and is overly
reliant on the skills of palliative care specialists (opposed to
empowering carers and communities to confidently lead a
co-ordinated approach to healthy deaths at scale).
This medical evolution of palliative care we naturally
find ourselves in – “treat the patient in front of you rather
than the population behind” has in-part led to the inequal-
ities of access and sections of poor provision we have seen
and demonstrated. In future, we need to evaluate models of
care in order to properly develop and our services, trained
workforce and communities to reach all people with palli-
ative care needs. Fourth generation evaluation, based on
relativism, offers a robust approach to work with stake-
holders including the local population and consider the
gaps and unmet need in order to define the course and
actions to be followed [54].
Indeed, many recent movements have recognised these
issues. We are in a privileged position to start to build
better. The pandemic has shed light on more collegiate
working and reshaping of services, the inequalities are
increasingly being recognised, we have realised our ser-
vices are limited and our role should empower as much as
enable the carers and communities we live in.
Policies within geographic areas that could help people
to learn how to support healthy deaths at scale:
• A Compassionate Communities, public health approach
should be formed and nurtured across a geographical area
to create a belonging.
• A narrative of everyone is a service and everyone is a
signpost to others.
•
Integrate primary, secondary, community, and social ser-
vices to support Healthy Deaths – linked to the same geo-
graphic areas, including relevant organisations such as schools
and pharmacies and enhance a sense of belonging with a fam-
ily’s local groups and faith or spiritual communities.
• Provide structured guidance and responsive support
nurturing the ethos of Healthy Deaths. This should include
localities offering a fully mapped “directory of services” to
support professionals and their communities.
• Routinely embedding the language of “What Matters
Most” and considering future care planning from birth to
death. Training all professionals to ask about and contribute
to care planning documentation over time whilst also acting
as a signpost to any relevant support and services.
• Support Self-Care, Shared-Care, and Networks of Carers –
to develop “bottom-up” locality-based, team-working to
address complex issues. This could be seen as a form of local
participatory democracy, with embedded community-devel-
opers, valuable for many issues other than end-of-life.
Informal and practical help by neighbours and scheduled help
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50 Chapter 4
by volunteers (like shopping) all contribute to keeping a
household routine in place even as care needs shift over time.
•
Embed freely accessible quality improvement pro-
grammes, such as the Daffodil Standards, to continuously
drive improvements and improve equity for people affected
by serious illness and end-of-life care.
•
Assess and address education and training needs for
community generalist staff and primary care networks to
reach the complex and diverse palliative care needs of the
people they care for. This includes specific needs of staff
caring for specific communities, such as, those working in
care homes.
•
Services to develop processes and systems to systemati-
cally hear the voices of people within the communities
they serve, in order to understand how to evolve services to
meet the palliative care needs relevant to the diversity
within the local population.
• Routinely teach fourth generation evaluation – so
researchers, practitioners, citizens, and educationalists come to
understand approaches to inquiry that illuminate inter-con-
nected and dynamic phenomena as well as individual facts.
•
Reducing unnecessary medicalisation, increased
community leadership, and greater coordination across
community settings where people are experiencing living
with care-giving roles, illness, dying and grief such as in
schools, universities, faith groups and businesses to get
involved, and make collaboration for health a normal,
expected part of end-of-life. And then it could become an
expected role of citizens throughout life.
We think of a Healthy Death as a positive story, co-cre-
ated from many contributions. The patient, the family, the
wider community, as well as relationships with profes-
sionals. Palliative care can help facilitate this story. Our
role is embedding the knowledge and skills across the
population, to demonstrate deaths normality, to share care,
to utilise resources, and to enable consistency of care to
individuals, at scale. A collective narrative bringing value
to the patient and community.
You do not have to be good.
You do not have to walk on your knees
for a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves.
Tell me about your despair, yours, and I will tell you mine.
Meanwhile the world goes on.
Meanwhile the sun and the clear pebbles of the rain
are moving across the landscapes,
over the prairies and the deep trees,
the mountains and the rivers.
Meanwhile the wild geese, high in the clean blue air,
are heading home again.
Whoever you are, no matter how lonely,
the world offers itself to your imagination,
calls to you like the wild geese, harsh and exciting –
over and over announcing your place
in the family of things’
– Wild Geese, Mary Oliver
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Handbook of Palliative Care, Fourth Edition. Edited by Richard Kitchen, Christina Faull, Sarah Russell and Jo Wilson.
© 2024 John Wiley & Sons Ltd. Published 2024 by John Wiley & Sons Ltd.
53
5
everywhere and go deeper into those features of hospital
palliative care that will have most impact on patients and
practitioners and which are most germane to the practice
of palliative care within hospitals. The history of modern
health-care systems can seem at times like a constant reor-
dering of the relationship between hospital and community
provision. It seems likely for the foreseeable future – unless
there is some major revolution in health care – that hospi-
tals as they exist just now as providers or secondary and
tertiary care are likely to be with us for some time. Palliative
care will need to continue to adapt itself to hospital care in
order to ensure that the best care is offered to those with
palliative care where they are rather than where we (or
they) might like them to be.
The chapter will therefore cover what a hospital pallia-
tive care team does, the roles within them and the interac-
tions between palliative care teams and those with whom
they need to interact to provide the best care possible for
patients. The chapter touches upon not just what palliative
care teams do in hospitals but also how they undertake
their work. This involves an approach to quality improve-
ment, advance care planning and broadening access to pal-
liative care for hospital patients.
A Very Short History of Hospital Palliative
Care Teams
While the history of modern palliative care is traced to the
foundation of St Christopher’s Hospice in London by Dame
Cicely Saunders, other pioneers of the specialty built on this
and developed other models. The Canadian surgeon, Dr
Balfour Mount had visited St Christopher’s Hospice in 1973
and rather than develop the same model of a free-standing
hospice, established a ward providing similar services within
Hospital Palliative Care
Paul W. Keeley
Introduction
Palliative care is an approach that improves the quality of life
of patients and their families facing the problem associated
with life-threatening illness, through the prevention and
relief of suffering by means of early identification and impec-
cable assessment and treatment of pain and other problems,
physical, psychosocial and spiritual [1].
The World Health Organisation (WHO) definition of palli-
ative care is at pains to avoid any statement or implication
about where palliative care should be undertaken, precisely
because the authors of the definition were clear that pallia-
tive care could and should be undertaken in any clinical con-
text. Not merely that but the definition goes on to state that:
[Palliative care] uses a team approach to address the needs of
patients and their families, including bereavement counsel-
ling, if indicated.
Palliative care is not a solitary pursuit. A team approach
and especially a multidisciplinary approach, is essential.
Hospital palliative care teams are significant in the history
of palliative care in that it was precisely the suffering of
dying patients in hospital that had been highlighted in the
immediate post-war period that prompted the development
of the hospice movement and palliative care [2, 3]. The
development of hospital palliative care teams, soon after
the emergence of the first modern hospices, was the
beginning of addressing unmet palliative care needs in
patients failed by the health system of the mid-twentieth
century and especially the hospitals.
This chapter will explore the role of palliative care teams
in the context of hospitals. Within this we will explore the
generic features of palliative care that are applicable
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54 Chapter 5
terms of patient satisfaction, concordance with patient
wishes and reductions in anxiety and depression [11].
Perhaps as important, early incorporation of palliative care
into clinical care brings with it benefits in terms of survival
and the reduction of health-care costs [10, 12, 13].
The barriers to access are manifold and relate to
knowledge, attitudes, and orientation on the part of clini-
cians and relatives and referrers (Figure 1). In many areas
of the world there may be little or no service available for
clinicians to refer to. Even within the well-developed health
services in the wealthy countries, the availability of pallia-
tive care services can be patchy [14]. It may simply be that
there are few if any palliative care services to refer to.
Where services do exist, potential referrers may be unaware
of their presence, having never encountered them in their
specialist rotations or posts, or because those services in
the case of hospices may be at a distance from acute hospital
services [15]. What is key is that hospital palliative care
teams have an educational and service obligation to ensure
that among potential referrers there is a knowledge of how
and when to refer and what the criteria for referrals should
be. Moreover, clinicians who are members of specialist pal-
liative care teams – whether based in hospital or hospice –
have a duty to ensure that they have or establish good
ongoing relationships with clinical networks, founded on
mutual respect, with ease of access for advice and become
embedded in structures of referral and support.
an established hospital, the Royal Victoria Hospital,
Montreal. At the same time he eschewed the word “hospice,”
and instead coined the term Palliative Care [4, 5]. A little
after this, in 1976, the first hospital palliative care team was
established in the UK at St Thomas’s Hospital in London,
acting as a liaison, advisory team [6].
Even the most vocal of critics, who had referred to the
hospices as “too good to be true and too small to be useful”
called for the integration of “palliative care support units
offering consultations, home care services, and a few beds
for the most difficult cases … in all the places where the
serious dying is done: in the front line of the dull old NHS”
[7]. While the author’s desire that hospices should “wither”
didn’t come true, the emergence of palliative care teams in
hospitals did continue and expand over the coming
decades. There was a recognition early on that the hospital
palliative care team may face particular challenges and
stresses which were different from those encountered in
the setting of a hospice where the culture and support may
be different from that of the hospital team [8].
The expansion of palliative care services was rapid
thereafter, with 324 hospital-based teams by 2004 [4].
There is now wide acceptance, at least within the UK, of
hospital-based teams, though often medical staff may have
posts with sessional input to both hospice and hospitals.
Differing models exist, in terms of the types of service
offered in hospitals across the world and there are marked
discrepancies in the provision of hospital palliative care
services in different parts of the world. In the United States,
for example, there are quite marked variations across states
in the provision of palliative care in hospitals, dependent in
part on the type of hospital (public and not-for-profit hos-
pitals are much more likely to have a programme than for-
profit hospitals, for example) and the geographical location
in the country (the north east and pacific being more likely
than south west and south east central states) [9].
Barriers to Access
The presence of palliative care teams in hospitals is not
enough, of itself, to ensure that patients with palliative care
needs have those needs met. While there is now ample evi-
dence that palliative care is of benefit from early in the course
of incurable disease, there remain barriers to the incorpora-
tion of palliative care within the care offered to patients in
hospital [10]. These barriers – cultural, attitudinal, structural,
and organisational – exist within hospitals and work to the
detriment of the care of patients with palliative care needs.
The early involvement of specialist palliative care aimed
at enhancing quality of life has demonstrable benefits in
Restrictive
Eligibility Criteria
Focus
on Cure
Resources
Patient or Family
Reluctance
Referrer
Re
luctance
Barriers
to
Access
Attitude
to Care
Figure 1
Barriers to access to hospital palliative care services.
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Hospital Palliative Care 55
patients and families) it is evident that palliative care
multi-professional teams should have a range of responsi-
bilities spread across the different roles (Figure 2). Team
members bring their skills and experiences as individuals
as well as in their professional role. For example, diagnostic
assessment and prescribing skills may be provided by the
medical team and those in advanced practice roles.
Holistic, psychological, and spiritual assessment and inter-
ventions can be provided by a range of clinical roles
including psychologists, social workers and chaplaincy.
Extended team members may also include family support
workers and volunteers meeting the specific needs of
patients and their families. There are crossovers in skills
and it is important for a team to have a range of skills and
experience as it is impossible for one individual to meet all
the needs of patients and their families. Palliative care is
based on the principle of multi-professional working.
There are risks to concentrating skills on one particular
person. Solo work risks isolation, idiosyncratic
management, lack of professional growth and burnout [19,
20].
Palliative care teams then are a group of people with a
full set of complementary skills working together to
complete the task of providing or facilitating good pallia-
tive care within, in the case we are discussing, a hospital
setting. In general, teams tend to be have “core” members,
typically doctors (senior specialists, doctors in specialist
training) and clinical nurse specialists, with the extended
team being drawn from other specialties/professions such
as pharmacy, chaplaincy, physiotherapy, and occupational
therapy, or clinical psychology and with access to the skills
of other teams (for example psychiatry) less able to offer
comprehensive palliative care services.
Referrers may have a misplaced fear of upsetting
patients, may see referral as an admission of professional
failure or an abandonment of a patient they have known
since diagnosis into the care of others. Families or
patients may themselves be resistant to referral. They
may see referral to palliative care as almost hastening the
death in itself or there may a fear of diminishing the
patient’s sense of hope.
For older people a number distinct barriers have been
identified in the provision of palliative care in hospital.
These include attitudinal differences to the care of older
people, a focus on curative treatments within hospitals
and a lack of resources. There are evidently differing
understandings of whose responsibility it is to provide
palliative care for older people, and uncertainly over the
roles of specialist and generalist palliative care providers
in acute hospitals [16].
One of the key points to note is the fact that, given the
nature of palliative care as a specialty, that the reach of
hospital specialist palliative care teams (HSPCTs) is
unlikely to be sufficiently wide to ensure that the needs of
all patients with advanced disease are going to be met by
those teams – even if it were possible to fund diverse and
well-staffed teams. It is arguable that it would not neces-
sarily be desirable that a HSPCT delivers all the palliative
care that is required. There is an argument that part of the
role of a HSPCT is as a leaven within the hospital, encour-
aging and facilitating good generalist palliative care
among their clinical colleagues. By analogy, it would not
be functionally possible for a hospital to ensure that every
single patient with chronic obstructive pulmonary dis-
ease were managed, or even seen by a respiratory team. In
the same way, not every patient with advanced incurable
disease will require the input of a member of the HSPCT
[17].
The Features of a Hospital Palliative
Care Team
The models or ideals for teams tend to come from the
realm of the business world. Teams should have the char-
acteristics of working with a high degree of interdepen-
dence, sharing authority and responsibility, being
accountable for collective performance and working
towards a common goal and shared rewards. This seems to
be a reasonable definition that would fit palliative care
teams as well as teams in business [18].
When we think of the range of activities of palliative
care services (patient assessment, clinical management,
and engagement and communication with professionals,
Figure 2 Elements of and responsibilities of hospital palliative
care teams.
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56 Chapter 5
that they have significant symptom needs and, in many
cases, a worse prognosis than many cancers [27]. The
problem for palliative care teams in approaching the
needs of patients with non-malignant disease will be the
fact they may have less predictable illness trajectories,
making prognosis, and advance care planning more dif-
ficult. Likewise, patients with non-malignant disease
may be under-recognised by referrers as suitable for
referral to palliative care and may have symptom clusters
for which palliative care has a threadbare evidence base
[28, 29].
Assessment of Patients
In considering patients with palliative care in a non-pallia-
tive care setting, it is important to again look at the WHO
definition of palliative care:
Palliative care is an approach which improves the quality of
life of patients and their families facing the problems associ-
ated with life-threatening illness through the prevention and
relief of suffering by means of early identification [1].
The important part of the definition here is the impeccable
assessment and treatment of pain and other problems
physical, psychosocial, and spiritual [1].
While those working in palliative care will be familiar
with the definition, it is important to pick up on that palli-
ative care looks to provide relief from pain and other dis-
tressing symptoms. Palliative care integrates psychological
and spiritual aspects of care, uses a team approach to
address the needs of patients and their families, and aims
to enhance quality of life. This is done in conjunction with
other therapies that are intended to prolong life such as
chemotherapy or radiation therapy, and includes those
investigations needed to better understand and manage
distressing clinical complications.
The reason for highlighting these points are, these are all
integrated elements into holistic assessment, and this is key
to understanding their relationship to palliative care as
being holistic in its aims as a speciality. The WHO defini-
tion of palliative care relates in an interesting way and
dovetails with the WHO definition of health, which states
that “health is a state of complete physical, mental, and
social well-being and not merely the absence of disease or
infirmity” [30]. It is important to point out the shift from a
pre-war definition of health as the absence of disease and
infirmity to much more positive view, but also interest-
ingly that in looking at health in the second half of the
twentieth century, clinicians were looking towards health
being a holistic matter, not merely involving the physical,
Teams tend to produce better results in both qualitative
and quantitative terms (frequency of visits etc.).
Care receiver satisfaction with a team is influenced favour-
ably by collaboration, conflict resolution and cohesive
functioning. Combined skills generally produce better
decisions and improved outcomes. Effectiveness of service
provision is improved by regular audit and other QI work
against agreed national and international standards.
Individual practitioners may be prone to burnout and poor
decision-making [21].
Interaction with Other Teams
Models of hospital palliative care teams will vary across
hospital and national settings – from established integrated
inpatient units with outreach and liaison to small, part-time
arrangements with a solely advisory role. The perception
of the palliative care team within the hospital is a significant
one to bear in mind in ensuring effectiveness. Tellingly the
first teams were self-perceived as a new model of “hospice”
rather than as an integral part of the hospital teams [22].
Indeed, it is quite revealing that the language used in the
early descriptors was that of a “terminal care” team. While
it is evident that palliative care teams from an early stage
were heavily involved in the hospital care of patients with
cancer, it was only by the mid-1990s that attention was
being drawn in the literature to the needs of patients with
non-malignant disease in hospitals [23].
What is evident is that while the historic focus of pallia-
tive care has been on cancer-related death and the pallia-
tive needs of cancer patients, the growing awareness of the
needs of patients from both within and outwith palliative
care means that focus and attention of palliative care teams
must be towards the palliative care needs of patients rather
than their diagnoses.
There has been a growing realisation over recent decades
that the palliative care needs of patient groups other than
those with cancer are unmet and are deserving of equal
attention as patients with cancer. The danger, of course, is
that there becomes an arms war of competitive need, not-
withstanding the fact that specialties outwith palliative
care have noted the palliative care needs of their patients.
Subsequent to this, many teams have worked collabora-
tively to map and define these needs in a consistent and
methodologically sound way, to seek therapeutic strategies
for addressing them and promoted service developments
to meet them [24–26].
Heart failure, respiratory disease, end-stage renal dis-
ease and neurological diseases all have a significant
claim to the resources of palliative care team on the basis
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Hospital Palliative Care 57
hospital may not afford the ability to assess patients as holis-
tically as in the setting, say, of a hospice. Hence there will
need to be a balance between the comprehensiveness of the
assessment, the incorporation of information already avail-
able from other clinicians who have already cared for or
have clinical responsibilty for the patient and the realities of
work in a busy clinical environment where it may not be
practically possible to replicate the holistic assessment that
may be feasible in a hospice.
For the most part, assessments will take the form of the
traditional history, examination and investigations of the
biomedical model of care augmented, to a greater or lesser
extent, by psychiatric or psychological assessment, a review
of the patient’s family and social support and framework of
spiritual or existential beliefs, practices, and concerns.
There have been attempts to systematise these assessments
either for clinical practice or for research. These incorpo-
rate the preparation, history taking and physical examina-
tion before explaining, planning, and closing a consultation
considering the patient’s and the family’s individual wishes
and goals.
There have been attempts over the years to systemati-
cally look at the holistic assessment of supportive and pal-
liative care needs. A number of holistic assessment tools
have been developed. These include the Oncology Clinic
Patient Checklist, The Palliative Care Assessment Tool
Supportive Care Needs Survey (long form and short
form), The Distress Management Tool, Symptoms and
Concerns Checklist, Initial Health Assessment Form
Problems and Needs in Palliative Care Instrument
Sheffield Profile for Assessment and Referral for Care, and
the Needs at the End-of-Life Screening Tool [32]. These
had between 12 and 138 items for each of the tools assessed
- a very wide range. Twelve items for a particular
assessment tool might seem very small, 138 seems
unwieldy and impractical, and some are used for particular
groups such as cancer patients. All of them, in their own
way and in the settings or functions for which they were
designed are useful and validated, however, none of them
seem to have demonstrated an improvement in quality of
life [33]. One further example not highlighted by Ahmed
and colleagues in their systematic review has found some
clinical use in the United Kingdom as part of the Gold
Standards Framework. This tool, applies a mnemonic
PEPSICOLA to the holistic assessment of patients and is
shown in Figure 3 [34, 35].
A holistic assessment is necessary for palliative care
teams to give some degree of structure to encounters, to
encourage the provision of holistic care and to ensure the
but also maintaining that mental and social well-being was
important as well in clinical care.
Against this backdrop of a changing understanding of
the different elements of health and disease and a more
holistic view, Cicely Saunders developed the idea of “Total
Pain.” Her research using opioids in the early 1950s led to a
realisation from her studies of dying hospice patients that
pain wasn’t merely a physical phenomenon, but there were
elements of both psychological, social, and spiritual ele-
ments that were at play that led to her coining the phrase of
“Total Pain” [31].
This entails consideration of the more existential aspect
of suffering as part of the experience of dying patients and
of ill patients as a whole. The WHO definiton was devel-
oped in large part by Robert Twycross’s who had worked
with Cicely Saunders in the early day of St Christopher’s.
Twycross advanced the concept further in the WHO defi-
nition by incorporating the need for “impeccable
assessment and treatment of pain and other problems,
physical, psychosocial and spiritual” [1].
This becomes a theme within palliative care in its
development and the fact that there’s a recognition that in
suffering and in symptoms, there are a range of influences,
physical, psychological, and social, as well as spiritual
involved in suffering. It’s important that those are assessed
as part of addressing the problems that are at play within
patients with advanced, incurable disease. Saunders’ view
of pain, having all of these elements at play and using pain
as a model for the rest of human suffering was important as
a development because this was in sharp contrast to the
previous biomedical model that was reductionist and saw
the whole of suffering as relating to the body rather than
the more numinous elements of human experience.
Meeting the needs of those suffering with life-limiting
illness will mean addressing all of those elements of that
suffering in an assessment, incorporating all of the differ-
ent elements of care. It may be difficult, if not impossible,
to achieve the “impeccable” assessment aspired to by the
WHO definition, but the aspiration, within the limits of
the practically achievable, is still of value. It will be seen as
evidence that suffering is multifactorial and involves dif-
ferent elements of the human character and different facets
of human life. The biomedical model, concentrating on the
merely physical and the physiological, will be inadequate
for that unless it incorporates the physical, psychological,
the spiritual, and the social.
There will of course be a tension between the time and
resource demands of a busy palliative care service and the
need for holistic assessment. The environment of an acute
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