end-of-life care pathways and nursing: a literature review

End-of-life care pathways and nursing: a literature review

TESSA WATTS M S C , B A , P G C E , R N

Senior Lecturer, College of Human and Health Sciences, Swansea University, Swansea, UK

Introduction

End-of-life care (EOLC) is a component of palliative care.

Nonetheless, considerable ambiguity surrounds these

terms, which are often now used interchangeably. The

World Health Organization (2002) defined palliative

care broadly in terms of multiprofessional, holistic care

of people with life-threatening illnesses, and their fami-

lies, the aim being to enhance quality of life. Recently, the

EOLC strategy (UK Department of Health 2008) offered

an EOLC definition, informed by the National Council

for Palliative Care, as: enabling those �with advanced,

progressive, incurable illness to live as well as possible

until they die� (p. 47). This broad definition is akin to the

aforementioned WHO (2002) definition of palliative care

but as people may live with advanced, incurable illness

for many years, palliative and EOLC are not synony-

mous. For the purpose of this paper, EOLC refers to care

in the last days or hours of peoples� lives when it is clear

they are progressively declining.

Correspondence

Tessa Watts

Department of Nursing

College of Human and Health

Sciences

Swansea University

Swansea SA2 8PP

UK

E-mail: [email protected]

W A T T S T . (2012) Journal of Nursing Management

End-of-life care pathways and nursing: a literature review

Aim To identify and discuss the current state of knowledge about end-of-life care(EOLC) pathways in relation to nursing.

Background Enhancing EOLC has become a central concern in governments� health

policies worldwide. End-of-life care pathways have been championed as complex

interventions to enhance the quality of end-of-life care. However, concerns have

been expressed regarding their purpose, initiation and use.

Evaluation A range of published literature was used to examine EOLC pathways in

relation to nursing.

Key issues Three main themes emerged: nursing�s contribution to the evolution of

EOLC pathways, implementing EOLC pathways and the influence of EOLC

pathways on nursing practice.

Conclusions End-of-life care pathways are to be welcomed as a means by which the

quality of EOLC might be enhanced. However, the state of knowledge about EOLC

pathways, their development, implementation and influence on families and pro-

fessional practice is in its infancy.

Implications for nursing management End-of-life care pathways are championed as

a means by which the quality of EOLC, for dying people and their families might be

enhanced. However, as concerns regarding the quality of EOLC persist, nursing

management has a crucial role in driving forward and supporting EOLC pathway

development, implementation and evaluation.

Keywords: care pathways, end-of-life care, healthcare quality, nursing, terminal care

Accepted for publication: 13 March 2012

Journal of Nursing Management, 2012

DOI: 10.1111/j.1365-2834.2012.01423.xª 2012 Blackwell Publishing Ltd 1

End-of-life care has come to the forefront of interna-

tional governments� health policies (UK Department of

Health 2008, Welsh Assembly Government 2008, Aus-

tralian Government 2009). Across the four countries of

the United Kingdom numerous initiatives have been

advocated in the drive to enhance EOLC in public and

private sectors, integrated EOLC pathways being one

example. End-of-life care pathways seek to exemplify

ideal journeys through this phase of palliative care into

bereavement and, as complex interventions, ensure high

quality, individualized comfort care is provided, irre-

spective of care setting (Watts 2012) and a good death

achieved. In the United Kingdom, EOLC pathways are

now recommended as best practice templates and a

means of assuring minimum care standards for the

imminently dying (National Institute for Clinical Excel-

lence 2004, UK Department of Health 2005, 2008, Welsh

Assembly Government 2008). In England, the Liverpool

Care Pathway for the Dying Patient (LCP) (Ellershaw

et al. 1997) has staked its place in the healthcare quality

improvement agenda, as measurement of its use is a

quality marker (UK Department of Health 2009). Argu-

ably over time EOLC pathways have transformed and

now resemble �hybrid ensembles of clinical and man-

agement agendas� (Allen 2010, p. 48).

Aim

Quality management and improvement are core com-

ponents of the work of many nurse managers. By virtue

of their leadership roles, nurse managers are ideally

positioned to positively influence the implementation

and use of EOLC pathways. To provide a current re-

source for nurse managers in public and private care

sectors, this paper aims to identify the present state of

knowledge regarding EOLC pathways and nursing

though a critical review of the literature.

Background

For the purpose of this paper and drawing on the work

of Rotter et al. (2010) and Chan and Webster (2010),

an EOLC pathway is defined as a structured, multidis-

ciplinary, evidence-based document that maps vital care

interventions for individuals and their families in the

last days and hours of life and the immediate bereave-

ment period. Initiated when there is a consensus that the

person has entered the dying phase, the pathway is in-

tended to guide clinical decision-making and replace all

other documentation (Ellershaw & Ward 2003).

Typically, these documents are structured in three dis-

crete sections: initial assessment, continuing assessment

and care following death. In addition, there are sections

for recording deviations (variance) from the pathway.

Supporting information for families and health profes-

sionals and medication guidance may also be provided

(Watts 2012). In each of the aforementioned sections

specific goals are identified. While these goals cover

physical, psychological, social and spiritual care, the pri-

mary focus in the two assessment sections is physical

comfort care: for instance, anticipatory prescribing to ease

distressing symptoms, discontinuation of futile interven-

tions and continuous monitoring of the individual�s com-

fort. Goals following death in the immediate bereavement

period are largely directed toward standard procedures

and legal requirement, for example, verification and cer-

tification of death and, if required, contacting the coroner.

End-of-life care pathway development was prompted

by the recognition of sub-optimal care for the immi-

nently dying and their families, particularly in acute care

(Mills et al. 1994, Rogers et al. 2000, Middlewood et al.

2001). Many EOLC pathways are adaptations of the

innovative LCP that was designed to enhance and rein-

force education and to translate the hospice model into

an evidence-based framework to optimize EOLC for

people dying from cancer in these settings (Ellershaw

et al. 1997, Ellershaw & Ward 2003). Over time the

LCP has been adopted, translated and adapted globally

(for example, Swart et al. 2006, Veerbeek et al. 2008,

Department of Health Western Australia 2009, Jackson

et al. 2009, Lo et al. 2009, Constantini et al. 2011) to

reflect local guidelines and protocols and to address the

needs of those dying from other conditions, for example,

advanced chronic renal failure (MCPIL 2008, Douglas

et al. 2009), stroke (Jack et al. 2004), heart failure (El-

lershaw & Ward 2003) and even burns (Hemington-

Gorse et al. 2011) across public and private care settings.

The international diffusion of EOLC pathways has

occurred in the absence of compelling evidence of their

impact on patients, families and professional practice.

Drawing conclusions from their Cochrane Review of

the effects of EOLC pathways, Chan and Webster

(2010) suggested there was insufficient �sound evidence�(p. 7) to support their use. Similarly, reporting on their

integrative review evaluating the impact of EOLC

pathways in acute and hospice care, Phillips et al.

(2011) noted that the evidence for their effectiveness

was �low level� (p. 951). The evidence these writers refer

to is contextualized in the hierarchy of evidence. Al-

though challenged in recent years (for example, Rolfe &

Gardner 2006), this hierarchy, where the randomized

controlled trial is viewed as the gold standard (Watts

et al. 2001) with other forms of evidence deemed less

valid, continues to be privileged by (some) health

T. Watts

ª 2012 Blackwell Publishing Ltd2 Journal of Nursing Management

professionals and influential organizations. This is evi-

dent in calls for trials of EOLC pathways (for example,

Shah 2005, Constantini et al. 2011, Phillips et al. 2011),

despite inherent methodological and ethical challenges

of conducting trials with those nearing death. Given the

significant ontological differences between natural and

social worlds (Benton & Craib 2001), whether trials,

rooted as they are in the epistemology of positivism,

encapsulate the complex EOLC process is debatable.

Across care settings nurses are at the forefront of

caring for people and their families approaching the end-

of-life (Costello 2001, Hockley et al. 2005, Thompson

et al. 2006). While many clinical areas appear to have

embraced EOLC pathways (MCPIL 2007a, 2009a,

Johnstone et al. 2011), concerns have been expressed

regarding their purpose, initiation and use, particularly,

but not exclusively, in �generalist� settings (Dee & En-

dacott 2011). Such concerns may reflect insufficient

understanding of EOLC pathways and inhibit their use.

Evaluation

A search was performed of literature published between

1997, when the first paper about EOLC pathways was

published, and 2010. Methodical searches of the elec-

tronic databases CINAHL, the Applied Social Science

Index and Abstracts (ASSIA) and Pub Med were con-

ducted as these had the greatest potential to be rich data

sources relating directly to nursing. A range of key

words and medical subject headings (MeSH) was used

to uncover relevant literature published in English and

described and indexed using slightly different termi-

nology. Terms used were �care pathways� and �inte-

grated care pathways� and each of the following:

�terminal care�, �end-of-life�, �palliative care�, �supportive

care�, �hospices�, �dying� and �specialist palliative care�.Electronic searches yielded 339 papers. Following the

removal ofduplicates (n = 217) and thosenot published in

English (n = 4), this was reduced to 118. Titles and ab-

stracts of papers were examined for inclusion against the

following criteria: research, clinical audit, review or crit-

ical commentary which focused on adult EOLC and was

published in English between 1997 and 2010. Forty three

papers met the criteria and were retrieved for full review.

Reference lists of retrieved papers were scrutinized

for literature not revealed through electronic searches.

Hand searches of core journals, for example, Interna-

tional Journal of Palliative Nursing and Palliative

Medicine were undertaken. Publications of key authors,

for example, John Ellershaw and government and

research centre websites such as the Marie Curie Palli-

ative Care Institute Liverpool (MCPIL) and the Inter-

national Observatory on End of Life Care were also

searched, producing 18 papers. Thirteen included El-

lershaw as an author and had been identified through

the electronic searches. Thus, in total, 48 papers were

included for review: nine research papers; one Cochrane

Review; one integrated review; 18 clinical audit reports

and 19 �narratives� in the shape of critical commentar-

ies, reflections on practice and discussions (Figure 1).

The literature was read and reread to identify content.

Informed by the work of Polit and Beck (2004) a process

of paper-based coding facilitated a description of con-

tent. Codes were grouped into categories, sub-categories

and the principal themes. Three major themes emerged:

nursing�s contribution to the evolution of EOLC path-

ways, implementing EOLC pathways and the influence

of EOLC pathways on nursing practice. These themes

have been used to structure the discussion of key issues.

Key issues

Nursing�s contribution to the evolution of end-of-life care pathways

It is evident from reviewing existing literature that nurses

have engaged in EOLC pathway development, either as

members of quality improvement teams (Bookbinder

Potentially relevant literature revealed by electronic searches n = 339

Rejected as duplicates n = 217

Rejected as not published in English n = 4

Total titles and abstracts for screening against inclusion criteria n = 118

Rejected at title and abstract screening stage n = 75

Total full papers selected for review n = 43

Potentially relevant literature revealed by hand searches n = 18

Rejected as duplicates n = 13

Grand total of papers for full review n = 48

Figure 1Search and search and selection process.

End-of-life care pathways

ª 2012 Blackwell Publishing LtdJournal of Nursing Management 3

et al. 2005, McNicholl et al. 2006), multidisciplinary

committees, steering groups and working parties (Pooler

et al. 2003, Luhrs et al. 2005, Mirando et al. 2005,

Jackson et al. 2009, Lo et al. 2009) or as specialist palli-

ative care practitioners (Lhussier et al. 2007). As pathway

development is ideally an interprofessional undertaking

(Currie & Harvey 2000, Sulch & Kalra 2000), nurses�involvement has been significant.

An appreciation of nursing�s contribution to EOLC

pathway development is of interest as nursing has a long

association with EOLC and nurses have vital roles and

responsibilities in the care of dying people and their

families (for example, Beaver et al. 2000, Costello 2006,

Fridh et al. 2009). Through sustained, intimate contact

with these people nurses acquire deep understandings of

their needs and preferences. Accordingly, nurses can offer

unique insights into the complex phenomenon of holistic

EOLC and its management. Experienced nurses� prac-

tice-based, experiential knowledge, intelligently applied,

may surpass evidence in its archetypical, scientific sense

as these rich insights are embedded in experience and

local fields of practice, a fit with which is a necessary

condition for pathway development and implementation

(McCormack et al. 2002). Nevertheless, as Rolfe and

Gardner (2006) eruditely observed, such expert profes-

sional practice experience is �usually subservient to evi-

dence from research� and �the result is an apparent

devaluation of expertise in professional practice� (p. 909).

The construction of a care pathway is a complex, social

operation which is hardly neutral (Jones 2003) and can be

�highly variable� (Allen 2009,p.356). Allen (2009)warned

of the surfacing of �differential power of different dis-

courses� (p. 360) and conflicting agendas that potentially

challenge the development process. Of course, pathways

are fluid documents, as recent modifications of the LCP

and All Wales Integrated Care Pathway attest. Yet while

much of the literature has been written by nurses with

prominent roles in EOLC pathway development, silence

surrounds the development process and nurses� contribu-

tions therein. No empirical work regarding EOLC path-

way development has been reported and such work is

urgently required. By delineating the processes through

which EOLC pathways evolve and emerge, managers can

obtain invaluable insights which may be used to inform

education initiatives. This may contribute to successful

acceptance, sustained implementation and ultimately the

provision of high quality, individualized EOLC.

Implementing end-of-life care pathways

Effective EOLC pathway implementation is contingent

on a practitioner-led, strategic approach in which a

supportive space is created, enabling the voices of those

who will use pathways to be heard. Analysis of the lit-

erature revealed that several small scale, international

studies, audits and anecdotal accounts have described, in

various detail, EOLC pathway implementation for vari-

ous conditions and in different care settings (Fowell et al.

2002, Jack et al. 2004, Luhrs et al. 2005, McNicholl

et al. 2006). Frequently quality improvement method-

ologies were advocated and have been used to facilitate

EOLC pathway implementation (Ellershaw et al. 1997,

Bookbinder et al. 2005). This approach optimizes suc-

cessful change (Rycroft-Malone et al. 2002).

The acceptance and sustainability of an EOLC path-

way is contingent on health professionals having a sense

of inclusion, ownership and a clear understanding of the

pathway�s purpose and scope, for, as the literature

indicates (Pooler et al. 2003, Department of Health,

State of Western Australia 2009, Lo et al. 2009), the

pathway may be shaped, over time, by the health pro-

fessionals using it. For managers it is important to note

that nurses have been prominent in EOLC pathway

implementation processes, either as project leads (Mel-

lor et al. 2004, Mirando et al. 2005, Knight & Jordan

2007, Jackson et al. 2009) or facilitators (Jones &

Johnstone 2004, Bookbinder et al. 2005, Hockley et al.

2005, 2010, Duffy & Woodland 2006, Lhussier et al.

2007, Lo et al. 2009).

The facilitator�s role

The facilitator�s role in and approach to EOLC pathway

implementation has been variously described in the lit-

erature. Mellor et al. (2004) illuminated how, as a

clinical facilitator, an experienced senior nurse sup-

ported and educated hospital staff about the LCP.

However, analysis of Mellor�s account reveals that the

characteristics of the approach described are more akin

to a didactic facilitator as the expert approach rather

than one that is enabling and facilitative and acknowl-

edges the health professionals� body of knowledge. Al-

though ongoing support is crucial to sustaining

pathways� implementation (Rees et al. 2004, MCPIL

2011), Mellor et al. (2004) observed that a point was

reached when the EOLC pathway facilitator could

withdraw. In contrast, reporting on the findings from

their action research study, Hockley et al. (2005) de-

scribed how a range of facilitative approaches, includ-

ing reflection and collaborative learning, supported

EOLC pathway implementation in nursing homes and

enabled practitioners confidently to care for dying res-

idents and their families.

Hockley et al.�s (2005) work offers enlightening in-

sights into the process of apparently successful EOLC

T. Watts


pathway implementation through effective facilitation.

The facilitator is most certainly the foundation for

successful pathway implementation (Bragato & Jacobs

2003, MCPIL 2007b; Hogan et al. 2011), promoting

participation or �buy-in� and minimizing, even prevent-

ing, negative attitudes. The report of a pilot study of

LCP�s use in Western Australia highlighted that imple-

mentation floundered in the absence of such support

(Department of Health, State of Western Australia

2009). Facilitators should be knowledgeable in EOLC,

but whether their expertise extends to facilitation is

uncertain. With its roots in the seminal work of the

humanistic psychologist Carl Rogers, facilitation is a

skill that enables individuals to understand what needs

changing and how they may change (Kitson et al.

1998). This implies that facilitation is more than sup-

port. Indeed, facilitators require a repertoire of orga-

nizational knowledge and interpersonal, managerial

and communication skills together with the willingness

to work in partnership with others.

Educational strategies

In accordance with quality improvement methodolo-

gies, educational strategies have been used frequently to

promote and sustain EOLC pathway implementation

(Mellor et al. 2004, Gambles et al. 2009, Jackson et al.

2009). Nevertheless, in the literature underpinning

philosophical assumptions are disregarded and consid-

erable variation in the design and content of education

and groups targeted is discernible. A range of peda-

gogical approaches has been used, alone and in com-

bination, including formal and informal teaching,

training the trainer, collaborative learning groups and

reflection on practice. While educational content

broadly relates to EOLC principles, specifically symp-

tom control, communication and bereavement, together

with the pathway concept, variability across settings is

apparent.

Facilitators in Lhussier et al.�s (2007) action research

study articulated difficulties of simultaneously educat-

ing different health professionals with diverse needs.

This may reflect insufficient understanding of, insight

into and preparation for the dynamic process of inter-

professional education, that is to say learning �with,

from and about each other� (Watts 2010, p. 43). Some

health professionals felt inadequately prepared to use

EOLC pathways (Gambles et al. 2006, MCPIL 2007a,

2009a, Walker & Read 2010). Finally, with the

exception of work conducted in Australia (Department

of Health, State of Western Australia 2009), evaluation

of educational interventions and their impact on prac-

tice and sustaining change is lacking.

Challenges associated with implementation

Workforce composition and transience, coupled with

complex organizational cultures, professional ideolo-

gies, relationships and role boundaries combined with

concerns about litigation and the nature of evidence

render facilitating EOLC pathway implementation

challenging work. Additionally, concerns have been

raised about pathways and nursing practice. Specifi-

cally, concerns have related to standardizing practice

(Kelly 2003), threatening professional autonomy (Jones

2004), destabilizing clinical judgement (Rycroft-

Malone et al. 2008) and the professional body of

knowledge and transforming nursing work (Hunter &

Segrott 2008). Closs et al. (2007) posited that variances

may be perceived as reflecting poor, rather than indi-

vidualized, care. This may indicate insufficient under-

standing of the purpose of variance recording.

However, an alternate conception about the recording

and monitoring of variances (and the purpose of path-

ways more generally) is that associated with managerial

technology in the shape of standardization on the one

hand and surveillance on the other. There is a sense in

which this is reflected in the prescriptive, authoritative

tone of the language sometimes used. For instance,

Fowell et al. (2006, p. 845) and the MCPIL (2009b)

mentioned auditing �compliance� and the following

words of a nurse encapsulate a sense of surveillance in

the hospice setting:

�It was like you were getting checked up on.... it

was just like a check list on all of us and how we

were performing and were we doing the job

properly....� (Gambles et al. 2006, p. 419).

The influence of end-of-life care pathways onnursing practice

There is widespread agreement that EOLC pathways

are good. Findings from studies and clinical audits (Jack

et al. 2003, Hockley et al. 2005, 2010, Gambles et al.

2006, Lhussier et al. 2007, Paterson et al. 2009, Walker

& Read 2010) have indicated that the nurse�s perceived

care quality and consistency, communication, confi-

dence, documentation and interprofessional relation-

ships were enhanced.

Changing gear

Reporting on the earliest qualitative study of the LCP,

Jack et al. (2003) highlighted how hospital �network�nurses� (n = 15) perceived the EOLC pathway as a tool

for changing the focus of care. This is supported by the



findings from studies conducted in primary (Lhussier

et al. 2007) and intensive care (Walker & Read 2010).

Specifically, nurses considered that routine interven-

tions, for example, monitoring observations, were re-

duced and palliation of difficult symptoms, notably

death rattle and agitation enhanced. These findings re-

flect goals embedded within the LCP and All Wales

Integrated Care Pathway and resonate with those re-

ported in the national MCPIL (2007a, 2009a, 2011)

audits. Whether this focus is a consequence of the

introduction of the pathway tool, education, a combi-

nation of both, or even professional expertise is uncer-

tain. Yet, despite the holistic ethos of EOLC pathways,

it is noticeable that nurses appear to focus on improving

physical care.

The perception of enhanced symptom control at this

point is welcome, not least because symptom control is

a prime concern of those nearing the end of life (Ste-

inhauser et al. 2000, Gott et al. 2008, Gardiner et al.

2009). This perception offers an indication of the po-

sitive impact of the EOLC pathway on practice. Al-

though inscribed prescribing guidelines have been

perceived as contributing to anticipatory symptom

control and enhanced care (Jack et al. 2004, Walker &

Read 2010), changed prescribing habits have not been

universally experienced (Lhussier et al. 2007). In some

areas, death rattle has remained problematical follow-

ing EOLC pathway implementation (Ellershaw et al.

2001, Fowell et al. 2002, Pooler et al. 2003). Audits by

Pooler et al. (2003) and Knight and Jordan (2007) have

indicated how this may be associated with ineffective

prescribing. Yet the nursing and pharmaceutical chal-

lenges of managing this problem have been widely

articulated (Watts et al. 1997, Watts & Jenkins 1999,

Back et al. 2001, Bradley et al. 2010).

Meeting families� needs

Mullick et al. (2009) surveyed the caregivers (n = 42) of

people who had died with the LCP in place and found

that those who responded (n = 25) were satisfied with

the care provided. In relation to their information and

support needs, caregivers expressed high satisfaction

levels. This was a small pilot study, conducted as part of

a service evaluation. As such generalizations cannot be

made. Yet studies have indicated that the LCP aug-

mented nurses� awareness and prioritization of families�needs thereby opening up communication about a per-

son�s impending death (Jack et al. 2003, Hockley et al.

2005, Gambles et al. 2006).

Hockley et al. (2005) described how an EOLC pathway

facilitated greater openness about dying and death and

that this translated into dialogue with residents and

families. However, it is impossible to determine the nature

and content of these interactions and thus more fully to

understand how the openness and dialogue revealed by

Hockley et al. (2005) was achieved in practice. This is

important for the research indicates that EOLC pathways

are also perceived as memory aids. This is reflected in the

ways in which communicating with families specifically

relates to particular aspects of the EOLC pathway docu-

ment, for instance, finding out if relatives: �want to be

contacted overnight� (Gambles et al. 2006, p. 418), the

unidirectional dissemination of information about pa-

tient care through reassurance (Gambles et al. 2006),

advising families what is expected and what is going to be

done (Jack et al. 2003). Talking about dying and death,

an essential element of EOLC is delicate territory that

demands time, sensitivity and expertise. When subjected

to relentless pressure the aforementioned focus may rep-

resent a means by which nurses avoid making strong

bonds, control their work and protect themselves. The

inherent danger is that the use of the pathway as a memory

aid may engender or reinforce a mechanistic, routine ap-

proach to care delivery and even compromise the provi-

sion of high quality individualized care and support.

Enhancing confidence

Several studies have noted the positive impact of EOLC

pathways on nurses� confidence when caring for dying

people and their families (Jack et al. 2003, Hockley et al.

2005, 2010, Lhussier et al. 2007, Jackson et al. 2009).

This finding is based on self-report and what actually

occurs in practice is unknown. No detail is afforded

regarding participants� precise roles, experience and

educational preparation. Recently qualified or less expe-

rienced nurses, who, by virtue of their novice position

may be less prepared to be flexible in their approach,

tended to be more enthusiastic about EOLC pathways

(Jack et al. 2003). Yet, as Ellershaw et al. (2001) ob-

served, EOLC pathways offer �consistency in care without

being prescriptive, allowing the healthcare professional to

deviate from the care� (p. 13, emphasis added). These

words reinforce the importance of individualized care and

the place of clinical judgement in achieving this. They also

signify the importance of professional expertise and

experiential knowledge in making clinical decisions.

Documentation

There appears to be a general perception that the EOLC

pathway documents are easy to use (Closs et al. 2007).

The format of tick boxes, signatures and documenting

T. Watts


by exception means EOLC pathways have been per-

ceived as condensing and thus streamlining paper work

(Jack et al. 2003, Mirando et al. 2005, Walker & Read

2010), whilst maintaining a concise, albeit minimal

patient record (Campbell et al. 1998). Accordingly the

document was professed to save time, ease workloads

and create a space to offer further supportive care (Jack

et al. 2003, Gambles et al. 2006). In terms of influ-

encing the experience of care and bereavement support

this space is significant.

There is a sense in which the functional attributes of

EOLC pathway documents and the implications for

nursing work are privileged. Thus the multifaceted

significance of the nursing record for documenting,

representing and making visible nursing care together

with its professional symbolism (Allen 1998) and con-

tribution to nursing knowledge is shifted into the

background. As Hunter and Segrott (2008) cautioned:

�It is quite possible that removing detailed narra-

tives of practice will in turn alter the embodied

memory of professional groups� (p. 620).

Given nursing�s long tradition of caring for dying people

combined with the centrality of individualized care this

incisive observation may be troubling for some. Perhaps

even more significantly, standardized pathway documents

call into question the whole notion of individualized pa-

tient care. Whether the streamlined documentation actu-

ally translates into enhanced individualized care and

support and the long term effects on professional nursing

practice and experiences of care are as yet unknown.

Nurses have been found simultaneously to use EOLC

pathway and nursing documentation (Knight & Jordan

2007, Walker & Read 2010). In contrast audits have

revealed that documentation deteriorated following the

introduction of EOLC pathways (Veerbeek et al. 2006,

Department of Health, State of Western Australia 2009)

whilst Closs et al. (2007) highlighted under-recording

of variances. The anomalies have not been fully ex-

plored and, in the absence of research, one may only

surmise the possible reasons for their occurrence. Given

the complexity of the pathway intervention, the cen-

trality to nursing of individualized care and the pro-

fessional and legal significance of not recording

information there is scope, particularly for managers,

for further exploration and analysis of the documenta-

tion aspects of EOLC pathways.

Discussion

This review was undertaken to identify and examine the

current state of knowledge about EOLC pathways and

nursing. While intended to be broad and inclusive, this

review is not without its limitations. Sifting papers by

title and abstract against inclusion criteria could mean

that potentially useful material was excluded, for a

paper�s relevance may be unclear from the abstract or

title (Evans 2002). However, reviewing all identified

papers could be onerous, particularly for a single re-

viewer, as was the case in the review reported here.

Herein exists a further limitation, for to arrive at a more

sophisticated interpretation of the literature reviews

should be conducted ideally by a research team.

Empirical work, clinical audits, systematic and inte-

grative reviews and a range of narrative papers were

included. An exploratory, descriptive qualitative ap-

proach was the favoured design in the majority of

studies with interviews or focus groups with staff often

used as a data collection method. Despite their meth-

odological limitations, for example, small samples and

sampling procedures that reduce their external validity,

current findings from research into EOLC pathways do

begin to offer insight into their impact on practice and

patient care from the perspective of nurses in different

care settings. As such they are valuable, particularly for

managers who are charged with implementing EOLC

pathways and enhancing the quality of EOLC.

Whilst recognizing the methodological limitations of

audits and thus the quality of data generated, to some

extent empirical findings connect with those from au-

dits. Audits suggest that EOLC pathways structure care

and promote proactive management of patient comfort

(Veerbeek et al. 2008). Whether patients� and, perhaps

more significantly, families� experiences are as positive

is unknown, for there has been no empirical investiga-

tion of their perspectives on EOLC pathways. Given the

drive to include families, where appropriate, in EOLC

decision-making, this is an area worthy of closer

exploration.

In view of the potential impact of negative media

reports regarding the LCP (for example, Devlin 2009),

specifically the idea that interventions may be with-

drawn or even implemented (for example, sedation) and

consequently death may be hastened, further investi-

gation is imperative. Little is known about how nurses

draw on their own professional expertise in making

EOLC decisions which deviate from the care pathway

and the impact of this on care (Phillips et al. 2011) and

support.

Conclusions

As a practice innovation directed at enhancing care,

EOLC pathways are to be welcomed. Yet pathways are



social constructions and whilst EOLC structures and

processes are now firmly delineated in pathway docu-

ments, little is known about how these pathways have

been developed and implemented and the challenges

therein. Also, the impact of EOLC pathways on families

and professional nursing practice remains relatively

unexplored.

Without doubt advances in EOLC have been made,

as the recent report by the Economist Intelligence Unit

(2010) revealed. However, concerns about the quality

of EOLC persist (National Confidential Enquiry into

Patient Outcomes and Death 2009, Health Service

Ombudsman 2011). These revelations and their injus-

tices to dying people and their families are troubling,

particularly given strategic policy direction, the wide-

spread diffusion of EOLC pathways and knowledge

that demand for EOLC is projected to rise considerably.

Despite their increasing use and the emerging body of

literature, in scholarly terms there has been negligible

critical consideration of EOLC pathways. Robust

empirical evaluation of their impact on dying people,

families and health professionals� practices and thus the

care processes across different settings is also needed to

investigate this intervention more fully. Essentially there

is a need to build on the important work already

completed and further extend the research programme

by drawing on a range of methodologies, appropriate to

the questions asked. Carefully constructed ethnographic

research lends itself to the possibility of capturing the

rich complexity of this complex intervention in context

and as such may offer a useful approach.

Relevance to nursing management

End-of-life care pathways are a significant practice

innovation, particularly for those who work in hospital

settings, for while most EOLC takes place in these set-

tings, EOLC may not form part of the nurses� everyday

work. While policy directives promote the implemen-

tation of EOLC pathways, when a person is expected to

die imminently, concern about the quality of EOLC

persists.

While EOLC pathways may enhance care quality,

particularly during the dying phase, pathway develop-

ment and implementation are complex processes. By

virtue of their leadership roles, nurse managers are

ideally positioned to contribute to and lead on their

development, implementation and evaluation. As key

points of contact, nurse managers are in a position to

drive the implementation of EOLC pathways and sus-

tain momentum through ongoing facilitation, appro-

priate mechanisms of ongoing support and evaluation.

It is crucial that nurse managers consider and under-

stand the facilitators of and barriers to the use of EOLC

pathways in practice in order that appropriate initial

and ongoing implementation strategies might be de-

vised. Due regard must be given to broader issues

relating to professional and organizational cultures and

interprofessional relationships.

Acknowledgements

I am grateful to Dr Ruth Davies and the anonymous reviewers for

their constructive comments on an earlier draft of this paper and

to participants at the Nursing Research Unit�s palliative care

seminar at the College of Human and Health Sciences, Swansea

University.

Source of funding

This research received no specific grant from any finding

agency in the public, commercial, or not-for-profit

sectors.

Conflict of interest

No conflict of interest has been declared by the author.

Ethical approval

No ethical approval was required for this article.

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