575677

research-article2015

PMJ0010.1177/0269216315575677Palliative MedicineCollier et al.

Original Article
Palliative Medicine
2015, Vol. 29(8) 695702
The Author(s) 2015
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DOI: 10.1177/0269216315575677
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The meaning of home at the

end of life: A video-reflexive
ethnography study
Aileen Collier1, Jane L Phillips2 and Rick Iedema3

Abstract
Background: While home is cited most frequently as being the preferred place of death, most people will die in institutions. Yet,
the meaning and significance of home for people nearing the end of life has not been fully explored.
Aim: The aim of this article is to critically examine the meaning of home for dying patients and their families.
Design: The qualitative study used video-reflexive ethnography methods. Data were collected and analysed over an 18-month period.
Setting/participants: Participants were recruited from two Australian sites: a palliative care day hospital and an acute hospital.
Participants included patients with a prognosis of 6 months or less (n = 29), their nominated family member(s) (n = 5) and clinicians
(n = 36) caring for them. Patients and families were followed through care settings including the palliative care unit and into their
own homes.
Results: Whether or not participants deemed space(s) safe or unsafe was closely related to the notion of home. Six themes emerged
concerning this relationship: No place like home; Safety, home and the hospital; Hospital becomes home; Home becomes
hospital; Hospital and connections with home; and The built environment.
Conclusion: Home is a dynamic concept for people nearing the end of life and is concerned with expression of social and cultural
identity including symbolic and affective connections, as opposed to being merely a physical dwelling place or street address. Clinicians
caring for people nearing the end of life can foster linkages with home by facilitating connections with loved ones and meaningful artefacts.

Keywords
Home care, health facility environment, human geography, patient safety, end-of-life care

What is already known about the topic?

Most, but not all, people have a preference to die at home.
For many people, a home death is not possible.
The meaning of home has ontological and social significance.
What this paper adds?
The meaning of home takes on heightened importance at the end of life and is closely associated with patient safety.
Implications for practice, theory or policy
There are opportunities for clinicians to consider how connections with home can be fostered for people hospitalised near
the end of life.

1Palliative

and Supportive Services, Flinders University, Adelaide, SA,

Australia
2Centre for Cardiovascular and Chronic Diseases, Faculty of Health,
University of Technology Sydney, Sydney, NSW, Australia
3Faculty of Health, School of Health Sciences, University of Tasmania
(Sydney Campus), Darlinghurst, NSW, Australia

Corresponding author:
Aileen Collier, Palliative and Supportive Services, Flinders University,
GPO Box 2100, Adelaide, SA 5001, Australia.
Email: aileen.collier@flinders.edu.au

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Palliative Medicine 29(8)

Clinicians also need to consider how their actions might influence the meaning of home when caring for people nearing the
end of life in the community.
A paradigm shift is required if hospitals are to be regarded as more than containers of clinical care.

Introduction
The field of palliative care frequently uses place of death
as a proxy outcome measure for service effectiveness or
quality.1,2 Achieving a home death in palliative care is seen
as the epitome of the good death while an institutional
death conjures images of a technical, impersonal and even
inhumane demise.3
However, there are limitations of using home as a
proxy outcome measure of effective palliative care.
Applying this measure does not describe the relationship between home care and/or death and quality of care
at the end of life. Furthermore, while most patients prefer to die at home,4 this is not the wish of all and, for
many people, is impossible. Better understanding of the
meanings patients and families assign to home may
contribute to a better understanding of the relationships
between home and quality of end-of-life care and help
clinicians provide appropriate care whatever the care
setting.

Meaning of Home
A variety of disciplines have explored the concept of
home over the past decade. Psychological meanings of
home have been associated with security and refuge, privacy, self-expression, reflection of ones ideas and values,
activity and locus for emotional experience.5 A sociological perspective recognises home as the centre for family
life; a place of retreat, safety and relaxation, freedom and
independence, self-expression and social status; a place of
continuity and permanence, a financial asset and a support
for work and leisure activities.6 However, healthcare
research around the meaning of home for dying patients
has only recently emerged.7 While attempts are often made
to create a more homely physical environment for
patients within institutional settings, such as palliative care
units, nursing homes or childrens hospitals, studies of
spaces where dying people find themselves are limited.
Emerging research has shown that older people view a
homely environment as one that supports spiritual expression and social interaction but allows privacy and access to
caring activities of staff.8 However, the concept of home
within the hospital environment for palliative and endof-life care has not been extensively explored, especially
from patients and families perspectives.
This article explores the meaning of home for dying
patients and their families in several care settings. Data

reported here are part of a larger ethnographic study investigating the links between the places/spaces (care settings)
where dying people find themselves, and how spaces enable or constrain their agency (i.e. promote or inhibit the
capacity to act in that particular space) and contribute to
the safety and quality of the care they receive.9

Methodology
Theoretical framework
The discipline of human geography informed the analytical process, providing a theoretical perspective on
space as dynamically produced and reproduced in prediscursive, discursive and practical ways.10 This spatial
approach to the research required exploration of relationships and interconnections translating as the need to make
visible and consider a variety of perspectives over time
and space(s) rather than discrete groups of participants
including clinicians, patients or families in isolation and in
one care setting. Complementing this perspective, the
study applied an indigenous ethics research framework of
reciprocity in relationships with participants.11

Video-reflexive ethnography
Video-reflexive ethnography is an established methodology12,13 engaging directly with research participants to
make sense of visual data in which they feature in collaboration with the researcher. The method helps make visible
not only the views and feelings of each party14 but also the
spatial aspects of such views and feelings.15 Video ethnography commenced with observation and interviews followed by researcher (and/or participant) videoing of
participant accounts of care. Patients were asked, If you
were to make visible to clinicians what is most important to
your care what would you want them to see and to know?
Selected clips were then shown back to participants in
researcher-facilitated video-reflexive sessions, designed
to encourage discussion on issues of creativity, resources
and innovation as well as issues of concern.

Setting/participants
Eligible participants were initially sought from a specialist palliative day hospital and subsequently a large

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Collier et al.
Table 1. Summary of fieldwork.
Time period

Field-site

Data collection methods

Data types

May 2010 until

August 2010

Palliative care day hospital

(PCDH) within a 72-bed
sub-acute hospital

November 2010
until November
2011

Acute hospital large

metropolitan tertiary
referral hospital

Ethnographic field notes (EFN):

observation notes written by the
researcher
FI: spontaneous dialogue with
patients, family members or
clinicians in the field.
Semi-structured interviews (SSI):
formally pre-arranged interviews
Video-reflexive sessions: involving
research participants making sense
of visual data that they feature
in or have gathered themselves,
enabling them to make practical
and immediate changes to their
work practices and relationships

November 2010
until September
2011

Other care settings (at

patient and/or family
request) (patients
home, aged care facility,
palliative care unit)

The researcher attended PCDH

weekly over a period of 4 months
culminating in 18 days of attendance.
This resulted in 54 h of ethnographic
observations and field interviews (FI)
The researcher shadowed
patients and clinicians as opposed
to establishing a base in any one
particular area or ward. Shadowing
included members of the specialist
palliative care team, oncology
specialists, ward observation, informal
patient, family and staff conversations
and attendance at clinical handover
meetings
Patient and family interviews;
participant-generated video accounts

Australian tertiary acute hospital. Given the study focused

on relationships and interconnections over time and space,
there was a need to follow patients and families across a
variety of care settings including home, hospital, palliative day care and in-patient unit. Participants were
recruited using a combination of convenience, purposive
and snowball sampling. Recruitment methods were
designed to be as inclusive as possible, not privileging
any particular disease or setting. There were three categories of participants:
The patient living with a life-limiting illness,
The family member(s) of the patient (nominated by
the patient),
Clinicians identified by the person living with the
life-limiting illness.
Data reported in this article focus specifically on the
meaning of home from the perspectives of patients and
families. Specialty teams (including palliative care, haematology, oncology, respiratory, renal and cardiac) were
invited to provide the researcher with details of patients
who met the following inclusion criteria: over 18 years of
age, able to converse in English and identified as having a
poor prognosis using the surprise question: Would you be
surprised if this patient were to die in the next six months?16
While there were two recruitment sites, six patients were
followed prospectively through other care settings at their
own request. The ethnographer researcher (A.C.), an experienced community palliative care nurse, carried out

fieldwork as part of a doctoral study. In this role, A.C.

adopted a reflexive approach, exploring and acknowledging how clinical experience of caring for people at home
might and did influence data collection and analysis.
Institutional ethics clearance was granted from both university and local healthcare institutional human research
ethics committees (Ref No: 2009-264 HREC/08/HNE/434).
In keeping with the indigenous ethical framework, the consent process was iterative and thus continuous. The
researcher provided patients with a written information
sheet and provided the opportunity to contribute to the
study at the level of their own choosing. For example,
patients could elect not to be filmed, or to wield the camera
themselves. The researcher gained consent for observation
and videoing in person. Consent for video footage was
sought both prior and after videoing and prior to being
shown for reflexive purposes to selected audiences.

Data collection and analysis

Data collection was carried out over a total of 18 months
as outlined in Table 1. Semi-structured interviews
(SSI from here on) and video data were transcribed
verbatim, alongside field interviews (FI from here on)
and ethnographic field notes (EFN from here on).
Data analysis proceeded simultaneously with data collection. Each data set informed the other in an iterative
process of refining. As part of video-reflexive ethnography methods, data coding and analysis of reflexive
sessions data were guided by participants input, first

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drawing on the organisation of data by A.C. into prominent and consistent themes across all data sets.
Emerging themes were then edited into representative
video clips to show back to participants as part of a
continuous process of immediate critique, comparative
analysis and validation.17 Participant analysis was also
video recorded and used to further refine themes.
The theme of home emerged at the first level of analysis
and was referred to in peoples talk across all data sources.
Second, and consistent with emergent methods, the question of the meaning of home was introduced into the SSI
schedule asking the question if you are unable to be at
home, what would it take for you to be at home or feel
at home here in this place? Finally, analysis examined
how people speak about the meaning of home in response
to watching video footage.

Findings
Participants
All patient participants (n = 29) had a cancer diagnosis and
ranged in age between 27 and 89 years. Family participants
(n = 5) participated directly. Patient participant and family
dyads (n = 2) kept the camera and provided participantgenerated footage and accounts. Number of attendees at
video-reflexive group sessions ranged from 6 to 28 clinician participants and represented the following specialties:
palliative care, respiratory, surgical, renal and medical
oncology/haematology. In addition, larger hospital audiences were provided the opportunity to engage with
selected video clips. These sessions with up to 100 attendees followed a similar format to small group sessions.

Meaning of Home
Our findings show that whether or not dying people and
their family regard themselves as safe (or not) in a particular space or setting may be closely associated with notions
of home. Six themes emerged concerning this relationship:
No place like home; Safety, home and the hospital; Hospital
becomes home; Home becomes hospital; Hospital and
connections with home; and The built environment
No place like home. Patients frequently regarded home as
the preferred place of care and where they would choose to
be cared for if at all possible (Data Box 1).
Data Box 1. No place like home.
Patient: When youre in your own home and youve got your
family around you and nothing, no-one looks after you like
your family, you know, ok, youve got your doctors and youve
got your nurses and theyre dedicated people but unfortunately that family environment that family atmosphere, the

Palliative Medicine 29(8)

feeling of close family, you know cant beat it.They cant, I dont
think, well I havent seen yet, but I dont think, that any hospital
or any doctor or nurse can really give you that. (SSI, palliative
care day hospital)

For the patient quoted in Data Box 1, the hospital experience was starkly contrasted with the family environment
of being at home in his own house. He alludes to home as
partially crafted by the people to whom one is closest and
associated with being in close proximity with his family.
Thus produced, home is something that hospital space and
ambience are unable to provide.
Patients and families frequently referred to the meaning
of home in relation to their safety. Depending on patients
circumstances, sometimes the home dwelling was the safer
space. At other times, and in different circumstances,
patients regarded hospital as a safer space. The theme that
follows addresses the paradox between safety at home and
safety in hospital.
Safety: home and the hospital. When asked by the researcher
What would it take for you to be safe in this environment,
the patient first quoted in Data Box 2 relates safety to
being at home (dwelling place).
Data Box 2. Safety, home and the hospital.
Patient: To go home and just have a nurse come to the house
I think would be a better situation. Because it works on your
mind. If you want to stay alive you need to put your mind to
something that you want to do. Well I wanted to go home.
Ive been trying to get home for weeks. Now if theyd let me
go home, I could sort out the last few things that I have to
sort out. (SSI, palliative care day hospital)
Patient: I didnt want to go home, I was scared to go home
because hospital was secure, and I felt comfortable and I was
frightened to go home, in case I felt like I felt before I came
into hospital again, you know it was safer there where everybody dished out my tablets and you know it just felt more
secure and when I went home, the home nurse took over
and I clung to her. (SSI, palliative care day hospital)

The first patient quoted is aware of his poor prognosis

and expresses a strong desire to return home to sort out his
affairs. Indeed, he contrasts home with what he sees as the
unsafe environment of the tertiary hospital. This patient
conveys a safe space is a place where he can enact agency
and accomplish unfinished business focusing on tasks of
living rather than dying.
In contrast, for some patients and at certain times, hospital is regarded as a safer space than home. The patient quoted
last in Data Box 2 reveals an ambivalence about hospital in
relation to home. For this patient, the palliative care unit was
safer than home when symptoms were problematic for her.

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Collier et al.
Her view of safety incorporates the administration of medication by staff. Whether or not she feels safe is inextricably
connected with the relationships with staff. Home, for this
patient, is only made safe by maintaining connections with
the palliative care unit through the nurse.

about everyday home activities, being able to engage

with and reciprocate in these home activities in one form
or another and being connected with the physical environment of home (Data Box 5).
Data Box 5. Connections with home.

Hospital becomes home. Patients ambivalence associated

with home was also expressed in terms of the healthcare
setting becoming homelike. For example, one patients
husband contrasts the acute hospital and the palliative care
unit (Data Box 3).
Data Box 3. Hospital becomes home.
Patients husband: Its (the acute hospital) just a normal hospital, where this ones (palliative care unit) more like a get
away retreat.You know, when you go out to the country and
you go to a motel like thing. Its more like that. Its more
homeish than it is a hospital. (FI, palliative care unit)
Patient: I have mixed feelings about going home because of
the nurses and everything here. The nurses know me. I have
been coming back and forward (to the oncology ward) for
two years. Its a bit like home. (FI, acute hospital)

The patient quoted in Data Box 3 not only conveys her

ambivalence about home, but also she relates how ward
nurses, through getting to know her, contribute to her feeling at home in hospital.
Home becomes hospital. Conversely, the home space can
take on hospital-like qualities just as the hospital can take
on homelike qualities. The extract that follows conveys
how a patients feelings about home are influenced by the
need for care (Data Box 4).

Patient: Your family coming in, your friends coming in, you
know, people registering your car for you, friends going out of
their way to get things done at home. Things to get mum cab
charges if shes got to go to the doctor when Im not here,
you know someone to come and clean the house for mum:
your backup, your backup, right? Thats what you got to have.
(SSI, Home)
Patient: The staff, the people around you, how you look outside. I mean its a little comfort zone, but its not your big
comfort zone, right? Your big comfort zone is home. Here
you make what you can do with what youve got and I mean
to say; you think what youve got at home and your dogs and
things like this, you think about whether Sheila (pseudonym)
(her niece) is going to make it today or in three weeks time.
(SSI, acute hospital)
Patient: To let you bring in some of your own stuff, not big
stuff, just little things, like a flag and somewhere where you
can put photos. (SSI, acute hospital)
Patient: All I want to do is get back to my Croyden (hometown) (pseudonym), to my own place, to palliative care there.
There, my poodle will be able to visit me and all my friends
who are in their nineties you know. I want to be able to be
myself. I need my nails done and my hair done. I have always
taken pride in my appearance. While describing her feelings
she gestured with her hand while repeating, I just want to get
back over the hill to Croyden, where I can relax, where I can
be less anxious. (SSI, acute hospital)

Data Box 4. Home becomes hospital.

Patient: Its very off putting, you know like my house is

a mess, you know were waiting for the shed to be built
and that but I still feel, like she (personal carer) knows
me and she understands me and she accepts me but I
still feel uncomfortable. (SSI, patients home)
As this patient expresses, the manner in which she
views her home and her feelings about it change when she
requires care. Even when patients are able to be at home,
the meaning of home can alter when clinicians are required
to enter that home.
Connections with home. Being a patient in hospital made
patients feel disconnected from home. Participants
expressed the following elements of home as important:
being able to connect with loved ones (either in person or
on the telephone), being informed by family members

Having the right people around you was the most

common response provided by participants when asked
explicitly what would help in feeling at home when cared
for in hospital. Patients needed to know that they could
remain connected with significant others especially if
those others were unable to be present in person. When
cared for in hospital, peoples connections with home were
brought into sharp focus with a heightened need for markers and symbols that helped facilitate these connections.
Markers and symbols could be realised through the
gathering of meaningful artefacts around oneself and personalising the bed space, thereby strengthening connections with home. Connections with home can become
particularly potent when death is imminent. For example,
the last patient quoted in Data Box 5 died 1 day after transfer to the palliative care unit in her hometown. She reflected
on her life coming to an end, describing how her soul was
inextricably linked with home. Importantly, the necessity
of home for this woman was not the return to her place of

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dwelling, but rather home in Croyden (pseudonym),
where she could connect closely to her friends and family,
her dog and be surrounded by a natural environment that
was familiar and one that marked her birthplace.
Built environment. The built environment could either enable or inhibit home connectedness. In the extracts that
follow patients and families describe the effects of the
interior design of the hospital (Data Box 6).
Data Box 6. Built environment.
Patient: Id love a nicer environment
Researcher: So if you could have anything, what do you think
you would have there? What would it be like?
Patient: More Homely, not so sterile environment and I know
theyve (clinicians) got to work there but I dont know, Im
there all the time and when I look, Id love to paint it nice.
Patients sister: Just some paintings and pictures would be
nice in there.
Patient: Pictures would be beautiful. Its hospital colours and
Im there all the time and when youre there all the time, you
know it reminds me of the hospital, Im at the hospital again
and Im there all the time. (SSI, patients home)
Patient: Its (the hospital) depressing colours. Ive been as I say
a painter for years and some of these colours in here, especially the grey and that, theyre very depressing colours and
you know its not a very relaxing environment if youre really
sick. (SSI, Acute hospital)

The patients quoted above describe how the colour of

the walls and the aesthetics of the space make them feel
out of place, making them uncomfortable and anxious.

Discussion
The central analytical claim emerging from these findings
is that home assumes a particularly heightened meaning
for those who are dying and who associate home with
safety and security, but not necessarily with a specific
physical space. While patients and families convey the
importance to them of home in relation to the dwelling
place of home, their responses reveal that feeling at home
is entangled with, but also much more than, home as built
environment. Hence, we propose that for people nearing
the end of life, the meaning of home is a dynamic and elusive concept.
For patients cared for at home, reliance on clinicians
and equipment may make their home feel less than
home.18 Equally, home may confirm for them that knowing their own home equates with enhanced safety. For
patients in hospital, clinicians technical capability may
inspire them to feel safe, and the spatial design may make
them feel at home. It is therefore incorrect to view the

Palliative Medicine 29(8)

hospital as a technical and necessarily safe space.18 Being
or feeling at home should therefore not be equated with a
particular physical space. Instead, home refers in an
important way to the quality of care and relationships.3
Finally, if home is, as Cooper Marcus19 proposes, a
mirror of self and associated with a deep sense of identity
and a place where identities are expressed socially and culturally, then it follows that being disconnected from
home can challenge patients identity. Here, attention to
the variety of meanings of home becomes crucial, as it
now embodies any environment where the patient is able
to express their personal identity.

Implications for practice

Various international and national policies stipulate
responsiveness to patient preferences when it comes to
place of care and death.2,20 However, policies tend to
define the optimal place of care and place of death as
failing to acknowledge the indeterminate meaning and significance of home. Policies should allow for the possibility
that patients preferences do not align with established
conceptions about the optimal place to die. Here, it is
important to acknowledge the impact clinicians may have
on patients sense of safety, as well as that community palliative care teams can play an important role in enabling
people to die at home.18,21
That said, it needs to be acknowledged too that limits
may need to be placed on meeting patients wishes. When
a person expresses a wish to die in hospital, it is unlikely
that acute hospital admission would ensue without a biomedical reason.22 By the same token, current policy also
does not allow patients to remain in their home when they
are unable to access the care they need. Equally, palliative
care units often have a policy of short-term care necessitating transfer to long-term care facilities for ongoing care
further disrupting patients sense of home which is so
strongly linked to their identity and safety.
Clearly, these arrangements are service-centred more
than they are patient-centred: they involve criteria that
may not respect the sentiments of those who are needing
ongoing care. We acknowledge of course that a major
health system concern is juggling acute beds to meet
demand, but this too can have detrimental impact on the
wellbeing, identity and safety of those at the end of life.
The findings of the current study indicate that it is
imperative that we examine how the home needs of end of
life patients may be better met.23,24 Unfortunately, there are
no simple solutions to the most challenging problem of
realising home in the hospital. This study, however, provides insights into how patients and clinicians might be
supported so that a sense of home may be engendered
wherever dying and death occur. One strategy is to foster
creative connections with home, such as limiting patients
movements across wards and units, providing permission

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Collier et al.
for patients to personalise their bed space25 and attending to
patients cultural needs. Central here is supporting what
Rasmussen and Edvardsson26 term everydayness, that is,
supporting people to maintain their own personal and preferred activity rhythms, such as eating, showering and
sleeping.
Finally, to further expedite these changes, adult hospital design of the future should address the need to
accommodate families as well as dying patients.
Adjusting spaces and processes to the dying process is
critical to alleviate hospitals orientation towards clinicaltechnical work and provide opportunities for patients
to feel at home.

Limitations
This study was conducted in a single metropolitan city in
Australia and warrants being extended to rural and international settings, to gain additional insights and/or confirmation of findings. All patient participants spoke English and
had a primary diagnosis of cancer, despite researcher
attempts to recruit non-cancer patients, rendering this latter group a research priority. Furthermore, the studys basis
was interpretive, and therefore may harbour researcher
bias. In particular, A.C. and J.L.P. have significant experience of caring for people at home. Their perspectives and
values about how patients are positioned by healthcare
workers when home care is not possible may have influenced findings.

Conclusion
We argue the dichotomisation between hospital and home
as a place of death overlooks the central issue of meeting
peoples social and interpersonal needs, as well as their
clinicaltechnical needs. Understanding home as a fluid
concept oriented to giving shape to feelings of safety,
identity and being cared for would enable us to better
meet the needs of dying patients and their families, whatever the care setting. Since it is no longer sufficient to
simply equate a good death with death in the primary
physical dwelling place, it is now critical that we investigate how healthcare can be configured to facilitate the
needs of seriously ill and dying patients and their families,
including nurturing novel connections with and interpretations of home.
Acknowledgements
Thanks are due to all who participated in the study. The authors
also thank Professor David Currow, Professor Katy Clarke and
Associate Professor Meera Agar who provided helpful comments
on an earlier draft of this article.

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

Funding
Funding Sources Australian Research Council (Grant/Award
Number: DP0879002).

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