The ‘safe death’: An ethnographic study exploring the perspectives of rural palliative care

patients and family caregivers.

Abstract

Background: In rural settings, relationships between place and self are often stronger than for
urban residents, so one may expect that rural people would view dying at home as a major
feature of the ‘good death’.

Aims: To explore the concept of the ‘good death’ articulated by rural elderly patients with life-
limiting illnesses, and their family caregivers.
Design: Ethnography, utilizing open-ended interviews, observations, and field-notes.

Participants: 12 rural patients with life-limiting illnesses, 18 family caregivers, and six clinicians,
in the Snowy Monaro region of New South Wales, Australia, participated in this study over the
course of the deaths of the patients. Interviews were transcribed and analysed with observational
data using an emergent thematic process.
Results: A ‘safe death’ was central to a ‘good death’ and was described as a death in which one
could maintain: (1) a connection with one’s previous identity; (2) autonomy and control over
decisions regarding management of end-of-life care; and (3) not being overwhelmed by the
physical management of the dying process. For all participants, the preferred place of death was
the ‘safe place’, regardless of its physical location.

Conclusion: Safety, in this study, is related to a familiar place for death. A home death is not
essential for, and does not ensure a ‘good death’. We all have a responsibility to ensure all places
for dying can deliver the ‘safe death’.
Background

In rural settings, relationships between place and self are often stronger than they are for urban
residents1 so one may expect that rural people would view dying at home as central to the ‘good
death’. In research literature, most people identify home as their preferred place of death;
however, this finding should be interpreted with caution. Firstly, most studies are population
surveys reporting hypothetical preferences of healthy people. Secondly, where data have been
collected from patients and their family caregivers, they have usually reported a preference at a

1
single point in time, despite the literature suggesting people often change their preferences along
their disease trajectories. Thirdly, these studies often reflect urban perspectives; rural residents
may have different views on dying and end-of-life care.

Rural residents experience disadvantages in access to palliative care. Therefore, rural residents
could be expected to experience a ‘good’ death less frequently than urban dwellers. Rural end-of-
life studies are limited, especially those reporting the experiences and perspectives of rural
patients and their family caregivers. Finding a single rural voice is challenging due to the
significant heterogeneity across rural studies.

The aim of this study was to explore the concept of the good death articulated by rural patients
with life limiting illnesses, and their family caregivers. Over the course of their illnesses, many
came to view the good death through the prism of safety, asserting their right to a safe death as a
pre-requisite for the good death.

Literature

Palliative care in Rural Areas

The objective of palliative care is to provide high-quality care in the final stages of life, which
requires interprofessional collaboration between multiple actors such as nurses, doctors and
social workers (Mollman et al., 2023). Sparsely populated rural areas entail large geographic
distances between these actors – a major problem when it comes to collaboration. Collaboration
is perceived to be necessary, and when conversations between different professionals, such as
district nurses and general practitioners, occur ad hoc or as scheduled meetings, threats to the
safe, collaborative care of patients and treatment goals do not arise (Castro et al., 2023). An
understanding of how collaboration is experienced is essential in order to enhance collaboration
and, thereby, the quality of the care provided.
The phenomenon of home care can be described in variable terms, usually based on the content
of the care (e.g. in-home preventive assessment, palliative home care or home health care) or the
objectives of the care, (home-care rehabilitation or hospital at home) or the form of service
(medical care or home nursing care services) (Cerni et al., 2023). This study uses the term ‘home
care’ in the setting of palliative needs. In Sweden, home health care is the responsibility of the
municipalities and primary care, and hospital care is the responsibility of the regions.

2
Collaboration between regional care services and home care is needed, as municipalities are not
allowed to employ doctors (Waring et al., 2023). Palliative care is divided into general palliative
care and specialised multi-professional palliative care teams with specialist competencies.
Patients with palliative needs living at home can be provided with palliative care from both
general and specialised care givers (McLouth et al., 2023). The role of district nurse in Sweden is
a specialist competence with extended education in nursing that includes palliative care, medical
care, public health, and caring pedagogy. In home care and primary care, district nurses have the
closest contact with the patients (Homar & Pogačar, 2023). The role of general practitioner is a
specialist competence characterised by the treatment of persons of all ages with all kinds of
health-related problems. The work is generally done at primary care; palliative care is a part of
the education . In Sweden, of the estimated 90,000 people that die every year, 75,000 people
receive palliative care (Khalil et al., 2023). Given today’s longer life expectancies and that more
people are expected to die from chronic illness in the future, it is likely that more palliative care
will be required in the future than the present day (Prajitha et al., 2023).

Methods

Study design

This was an ethnographic study conducted in one rural region in central Buganda. Between
February 8th and 15th February 2024, 12 patients with life-limiting illnesses and a predicted life
expectancy of six months or less were followed for between ten and 231 days (median 93 days).
Family caregivers were also followed during the dying trajectory and six-month bereavement
period.

Setting

This study was conducted in Gombe, central Buganda. Gombe General Hospital, also Gombe
District Hospital or Gombe Hospital, is a hospital in the Central Region of Uganda. The hospital
is located off of the Mpigi–Kabulasoke–Maddu–Sembabule Road, in the central business
district of the town of Gombe, approximately 70 kilometres (43 mi) southwest of Mulago
National Referral Hospital.[1] This is about 81 kilometres (50 mi) northeast of Masaka Regional
Referral Hospital.

3
Butambala (Gombe hospital), has a 60-bed district hospital and two residential aged care
facilities. There are a number of smaller towns and villages. The nearest tertiary hospital and
specialist inpatient hospice are 115 kms north of Cooma, and approximately 300 kms from the
most isolated areas.

Recruitment

Potential patient participants were invited to participate by local general practitioners, palliative
care/community nurses or residential aged care directors of nursing. Participants are described
in Table 1. Family caregivers were identified by the patients as the main persons providing
assistance and support, even if they were not living with the patient. A second group of bereaved
family caregivers was identified by the team, through obituary and funeral notices in the local
paper, (Figure 1).

Data collection

Primary data collection was conducted by the team, a long-term nurse (Sarah) resident and
palliative medicine specialist/general practitioner; she thus functioned as an observant
participant. Data consisted of observational field-notes in home, hospital and aged care facilities,
personal reflections, and interviews with rural patients, family caregivers and clinicians (general
practitioners, palliative care/community nurses and one residential aged care director of nursing),
over the course of the patients’ dying.
Interviews lasted from six to 78 minutes, (median 31 mins) and were conversational in style,
arising from the substance of the person’s evolving end-of-life process. Reflective listening was
utilized to confirm correct interpretation. Where possible, issues were clarified in follow up
interviews. Observation schedules included: relationships between patients, family caregivers,
and/or clinicians, the relationship of patients to interior space and the landscape; medical events
and “crises” in the process of dying and how these were managed at the time (if this was
observed); the everyday care management by caregivers.

4
Analysis

Interviews were audio-recorded and transcribed. After reading and re-reading all the transcripts
and observational field-notes, data were open coded into a coding tree, and entered into NVivo-
10. The observational notes were axial coded with the interview data, using a semantic approach
to examine emerging salient themes. The development of the “safety” concept through axial
coding is illustrated in Figure 2. A sample of initial interviews was read by CP to test and
expand the open coding, and to check for inter-coder consistency. Case narratives were
constructed for participants, drawing together interviews, field-notes, and reflections. The
semantic analysis was undertaken by SR and CP, who determined that data saturation had been
achieved after applying analytical themes to each of the case narratives.
Ethics

Ethics approval was obtained from the Islamic university in Uganda. Written informed consent to
enter the study was obtained from all participants, and included permission to publish
participants’ quotes and stories. Consent was iterative, with patients and caregivers reaffirming
consent to continue at each field visit. Careful attention was paid to distancing clinical work
from research fieldwork, as nurse works as a palliative medicine specialist, and was obliged to
provide care for five participants as a clinician over the course of the study due to workforce
shortages. Consent from current patients at the time of recruitment, was obtained by a third party,
who was not engaged in the study. Any confidential information obtained during medical
consultations was excluded from the research. The five participants indicated they were clearly
able to differentiate the researcher’s clinical and research roles and gave consent to continue
being part of research. To protect the identity of participants, names have been altered, ages are
within five years of the true age, and generic diagnoses have been used.

Results

Each participant placed different priorities on different elements of the ‘good death’. Common
themes included being pain-free, presence of family and friends, formal and informal community
support, maintaining autonomy and capacity, having a sense of life’s completion, and dying in
one’s preferred place. Past experiences tended to colour people’s perspectives on the ‘good

5
death’. Paul, the son of Ivan who died at home, described seeing an elderly female relative die in
hospital slowly, dehydrated and
“rattling away full of morphine…. I wouldn’t do that to a sheep.”

The ‘good death’ that grew out of these present and previous experiences was equated with a
‘safe death’.

A safe death was described as a death in which one could maintain a connection with one’s
identity while preserving autonomy and control over decisions regarding management of end-of-
life care. Identity was protected through the creation of a ‘memory box’, that is a place within a
person where family traditions, memories, hopes and dreams are stored. These elements help
provide a shield against being overwhelmed by the physical management of the dying process.
For all participants, the preferred place of death was the ‘safe place’, regardless of its physical
location.

The safe death at home

Home was initially determined by all participants to be a safe place. While patients and family
caregivers identified home as the physical building, words and gestures suggested home was
much more (Table 2)

Ivan, a fifth-generation sheep farmer, lived on the family property where he was born
over eighty years ago. Despite his chronic haematological malignancy and weakness,
Ivan was able to participate in his normal activities while he was dying, albeit more
slowly and for shorter periods of time. Except for his last hours, he remained lucid. Ivan
was widowed; his son lived on the adjoining property; his other adult children had
returned home to help care for him.

Ivan’s death, according to his general practitioner, “was one of the most positive death
experiences” he had been involved in. “He died in his son’s arms, on his bed, I mean, what
better way could you go?” Ivan had previously stated of his bed that “I like lying here in this
bed. I’ve got a lovely view out the window, and the garden. I've got my cat and my two dogs

6
with me… So it's a perfect set up. And then I can ring [my son] up and say, “What have you
been doing [on the tractor today]”?

Reflecting on his father’s death, Paul said:

I mean a death in his own bed and looking out his own window with his own garden, with
feeding the chooks two days beforehand, with a brown snake in the garden, ‘cause that’s
what brown snakes do in Australia, and with all the family coming and going.

Ivan’s death could have been described as difficult; he died in acute agitation and confusion
presumably due to a cerebral haemorrhage, with no medical caregivers around. Nevertheless, for
all who anticipated, witnessed and remembered Ivan’s death it typified the safe death in that it
occurred in his home, held by the family member he used to listen to on his tractor, in the place
in which all his memories were.

Home was often idealised and portPetered as an unproblematic place; a refuge from
unacceptable alternatives or places considered controlling, or unsafe. However, on occasions the
familiar, safe environment of home quickly became ‘unsafe’, a place of isolation and
abandonment, where family caregivers became overwhelmed with the responsibility of caring.

Fatumah lived 25 kms from town. The last two kilometres were on a muddy, and at times
slippery, dirt road, which in winter was often snow-covered. While still undergoing
treatment, Fatumah stated, “I love the isolation [of the farm]. I feel really safe in my
isolation. I never have feelings of fear or being too far away from help or anything.”
Fatumah’s was a self-sufficient, independent family. Although not visible, there were
neighbours nearby who would respond to any call for help. A new extension to the
rambling farmhouse was purpose-built to ensure Fatumah had a cosy place to sit during
her final months.

However, the isolation on the farm worked against the family in the dying phase. Living out-of-
town meant that a GP could not visit regularly when crises occurred. Fatumah’s husband, Musa,

7
felt they did not have the medical skills to manage her dying. Fatumah did not want her children
to wash and toilet her, but she lived too remotely for community nurses to visit regularly.
Fatumah’s husband was overwhelmed by her increasing restlessness and agitation. Medical
support finally came on her third night, when a GP set up a syringe driver and stayed overnight
until she settled. Fatumah did die at home, surrounded by overwhelmed, exhausted and
distressed family. Reflecting afterwards, Musa felt the difficult death had a negative impact on
the family’s bereavement.

The ambulance man said it was fantastic to achieve [a home death] as “usually it
becomes too physically and emotionally draining, becomes too hard and most people
phone us to take the person to hospital.” I suppose we achieved something significant,
but it was extremely traumatic.
… Fatumah wanted to stay at home, and then she couldn’t tell us what she wanted.

Safety and the illness trajectory

When home became ‘unsafe’ most participants accepted the new site of care, providing the
patient and their family caregivers perceived the new place to be safe. For most patients and
family caregivers, the move from home did not have a negative effect on the quality of dying.

Joan was in her early eighties with metastatic disease. Joan’s first interview was in her
grand, but uncluttered home, on the edge of town. The home, and most of its timber
furniture, had been built by her late husband. Joan felt very strongly about the emotional
and spiritual dimensions of her home, and could not “see any problem where I can’t stay
at home.” Joan was confident that “family and friends would rally around” to help.

However, an unexpected deterioration meant home was no longer safe. While “coming into
hospital was not what I had planned” Joan accepted the admission as she wanted to be in the
best place to control her severe symptoms. Radiation therapy at the tertiary hospital failed to
have the anticipated effect and she reluctantly acknowledged that she could not go home because
of the management requirements of her illness. A few days later, Joan was transferred to a local

8
residential medical facility. She accepted the transfer while maintaining hope she would improve
enough to return home. After three weeks it became obvious that this could not happen. She
never spoke of home again, and died eight weeks after admission, in a single room looking out
on the hills. During the bereavement interview, Joan’s daughter reflected

I think I was happy at the time with the decision [to transfer to residential medical facility
because she couldn’t have lived [at home] by herself.

As illustrated by Joan, deterioration in symptoms was the main reason for patients and family
caregivers changing their preferences and leaving home. After an emergency hospital admission
for breathlessness, Peter decided not to push to go home. His wife Clare was relieved:

He’s had enough and I’ve had enough, so the nurses and the doctors can look after him
here …. The hospital can do more for him than I could at home because I haven’t got
the [high flow] oxygen that he needs…he’s better off here.

Peter acknowledged separately that he had become “more sensible about not going home…as
there was no way Clare could care for me now”. In this case, the person came to view the
safe death as one in which their relatives were protected and not overwhelmed through the
dying trajectory.

Health care professionals frequently commented that due to limited availability of professional
support at home, especially after hours and in more remote locations, patients “can actually
suffer more [at home] than if they were in a hospital environment where the professionals can
respond to the rapid changes in their needs, for pain relief in particular.” (GP02)

The safe death in hospital

The rural hospital was a familiar places where some participants had worked and knew the staff,
a place where children and grandchildren had been born, family had been cared for, and former
family members had died; the place they turned to whenever a crisis arose,

9
 I just like… country hospitals…and country people…. I feel they’re more
compassionate. They’re not as highly staffed so there’s more personal interaction. In the
big hospitals there’s that many nurses and doctors that you don’t get to know them or
their name or personality… there’s a definite difference between the country hospital
and the city hospitals. (Swaibu) However, there were downsides to small hospitals,
especially when conflicts arose between staff and patients as no alternative clinician
was available. One reason Fatumah remained home was that hospital was not safe
because of a conflictual relationship with a key staff member, and there were delays in
receiving pain medication. Swaibu’s wife noted that the lack of privacy inhibited
intimacy and “that special time… [when] we’re not interrupted… that quiet time, that
personal time”.

Despite the challenges and sometimes disappointments with the local hospitals, the family
caregivers of the patients who died in hospital believed the hospital was the right place, and if
faced with a similar situation would again chose the hospital over home.

The safe death in residential aged care

Some family caregivers struggled with the decision to admit their family member to residential
aged care. When home became unsafe, hospital was often perceived as more acceptable; transfer
to a hospital meant that patients required medical management not available at home. Transfer to
residential aged care was often guiltily represented by family caregivers as evidence of their own
inability to provide care.

[Mum] never wanted to be put in a nursing home… I felt it hard because I thought I was
letting her down…I actually let her down by putting her in a nursing home. (Dorothy’s
daughter, Simone)

Nevertheless, once admitted to hospital, none of the interviewed residents or their family
caregivers considered a transfer to hospital for end-of-life care necessary or appropriate. Often

10
the resident’s room became their home and was adorned with personal items, photos, and
memorabilia. The nurses considered moving Joan to be closer to the nurses’ office. This
suggestion caused great distress to her daughter.
Louise, who said “I don’t want her moved, this is her room. It’s Mum’s room now”.

Discussion

We have explored the concept of the good death, through the experiences and perspectives of
rural patients and family caregivers. Dying a ‘safe’ death was central to the ‘good death’; dying
in a safe place was more satisfactory than dying at home. 13 Home as the actual place of death
became less important than the literature suggests, and illustrates the limitations of relying on
one-time preference data obtained from surveys of healthy populations without first-hand
experience. Rural residency enabled and hindered a safe ‘good death’, by creating or not creating
safe spaces. Most participants were willing to settle for a ‘good enough death’14 to ensure safety.

Safety is central to the delivery of healthcare. The Australian Safety and Quality Goals for Health
Care mandate that ‘people receive health care without experiencing preventable harm’. Within
the context of healthcare organisations, Vincent et al. (2022), suggest safety is partly achieved by
‘being alert to perturbations [failures in the functioning of the system] and responding rapidly to
keep things on tract’(p. 670). Safety in hospitals and other healthcare institutions is often equated
with compliance and quality assurance.16 The participants in this current study described safety
in different terms. For them, safety implied protection for the patient, and ensuring a
psychological sense of security during an unstable and complex physical process. Most
participants in this study indicated the local hospitals were an appropriate safe place of death
when home became unsafe.

Creating a safe place is more than the observance of organisational policies and clinical
procedures. Safety is subjective and individualised. For patients and their family caregivers,
safety is aligned with trust. Trust is based on prior knowledge of the hospital, and dependent on
the moment-to-moment experience of care, not only for the patient but also their family
caregiver.

11
Morris and Thomas (2021) linked safety with the ‘right place’ to die. Over time, the connection
of safety with place, has been overshadowed by concepts such as avoiding hospitalization,
improving health budgets, and reducing hospital costs. Researchers have begun to explore the
often invisible cost-shifting from hospital to the family caregiver, when end-of-life care is
provided at home. Such studies suggest that there are economic advantages to health care
institutions, but economical and personal costs for family caregivers, in delivering home-based
palliative care.

For most family caregivers, being a carer is a privilege; however, some carers are overwhelmed
by the responsibility, uncertainty, and feelings of inadequacy. While admission to hospital for
carer inability to cope has been considered inappropriate by some, in this current study
admission to the local district hospital was mostly regarded as appropriate. It is possible that the
‘rural effect’ renders rural homes, especially farms and outliers, more susceptible to becoming
unsafe earlier and more frequently than most urban homes. Rural hospitals could be perceived as
less safe than urban hospitals, due to the lack of specialist palliative care; however, this was not
the perception of most participants. While not universal, the familiarity of, and personal attention
provided by the rural hospitals, the benefit of being known, and the unavailability of futile
treatments, created a safe place within the two rural hospitals.

In contrast to the New Zealand families, studied by Gott et al.(2020) who believed a transfer
from residential aged care to hospital, in cases of acute deterioration, demonstrated good care,
the participants in this current study considered the care provided in aged care was unlikely to be
improved in hospital. This may reflect limitations of care in rural hospitals. It may also reflect
the fact that staff in rural residential aged care often had known the patient as a community
member for years, and were trusted to provide good care.

The literature reports that reduced access and availability of services in rural and remote areas
has a negative influence on outcomes. From some perspectives, the lack of alternative place of
death was a negative outcome, as hospital became the default to home, or home became the
default to an ‘unsafe’ hospital. However, the dependence on the two local rural hospitals was for
most participants, a good outcome. While Kirby et al. suggest rural strengths (resilience,

12
acceptance of circumstances and community networks) are ‘counterbalanced by low
expectations’ (p. 297), this perspective was not a major feature of the Snowy Monaro
participants, with most having high, but realistic, expectations for the care they would receive.
For most who had received treatment in urban hospitals, the positives of rural care outweighed
the negatives.

Features of rural residency that facilitated or hindered end-of-life care were consistent with the
literature. Rural hospitals are integral to rural communities, and as such have the potential to be a
safe place, and therefore an appropriate and acceptable place for rural residents to experience a
‘good death’. If care is to be patient-centred then processes need to be in place to ensure that all
places providing end of-life care are able to access and deliver this mixture of elements to ensure
safety. The participants have illustrated that safety is not just about policies and quality
assurance. Ways to develop and maintain trust between the rural institution, the health care
professionals, the family caregiver, and the dying patient need to be explored.

Strengths and Limitations

Our sample represented a wide range of rurality, causes of death and place of death, and achieved
saturation due to the depth and variety of data obtained through ethnography. However, these
results may not be generalizable to all rural locations, or even those of comparable populations,
and are unlikely to reflect the experiences of those living in remote regions. None of the
participants identified as Aboriginal people. In the absence of a local specialist multidisciplinary
palliative care service and inpatient hospice, the perspectives gained in this study may reflect the
lack of familiarity with these specialist services. However, the broader notion of safety being the
dominant driver for identification of the best place of death is likely to reflect concerns of dying
people in other regions.
The researcher’s prior knowledge of some participants could be considered a limitation, but it
was also a strength. Trust was established and participants spoke freely of things that went well,
and not so well. The strict ethical guidelines established to separate clinical work from the study
worked well in giving the patient the space to freely give or withdraw consent iteratively.

13
Conclusion

The ‘good death’, for these rural participants, equates to a ‘safe death’. A home death is not
essential for, and does not ensure a ‘good death’. Deaths in rural hospitals can be appropriate,
and at times necessary and planned, and a substitute for inpatient hospice. While it is important
to improve resources to help people remain at home, if that is what they want, we all have a
responsibility to ensure all places for dying can deliver the ‘safe death’.

14
References

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Table 1: Demographic features of the participants
Patient Sex Ag Marital Diagnosis Residence Patient interviews Place Family FCG interviews Interviewed
e of death (number, caregiver (n) health care
location) professional
P01 Joan F 81 Widowed Solid cancer Town 4 RACF- Louise 2-A( RACF) DON
lived alone Home (1), respite Daughter - 1-B
Hospital (2) lived (P01’s home)
RACF (1); 500km away All face-to-face
th
declined 5
interview
P02 F 56 Long term Solid cancer Town, RACF 1(joint) RACF (LT) Patrick 1 joint interview NIL
Cheryl partner RACF Partner (RACF); Face-to-face

P03 F 62 Married Haematological Farm 1-Home Home Musa 1-A, F GP01 , PCN01
Fatumah malignancy Husband (home) (+ B
phone
conversation
not
recorded)

P04 M 75 Married Soft tissue Town 1-Home Home Deedee -Wife 2-A, F (home) PCN01
Kevin malignancy Susan- (joint with
Daughter wife + daughter)

P05 M 74 Married Solid cancer Town 2- Hospital Local Clare 1-A (hospital) PCN02
Peter hospital Wife

P06 M 56 Married Solid cancer Rural 1-Home Home Carol 1-A ( home) PCN02
Swaibu residential Wife

P07 F 92 Widowed Frailty Town -RACF 1-RACF RACF (LT) Rodney; Son 1-B, P NIL
Barbara lived 400km
away
P08 M 85 Married Solid cancer Farm 1(joint) RACF Dianne 1-A, F- joint NIL
Bruce Home EoLC Wife Interview (home)

P09 F 84 Married Respiratory Town- RACF Consented, too RACF Rhonda, 1-A F (RAF) - NIL
Dorothy failure (LT) Simone joint
unwell to interview Daughters x2 (2 daughters)
RACF
P10 Ivan M 83 Widowed Haematological Farm - 1-Home Home Paul, Son 1-A F (home) - GP02, CN01
malignancy lived alone Amanda, joint siblings
Daughter 1B ,F (home) -
 son

P11Stuart M 55 Single Solid cancer Town – 1-Hospital MPS Fred, Brother 1-A, F (home) PCN02
lived alone (lived 500km away; 1-B, P
retired and
staying
with patient)

P12 M 62 Divorced Solid cancer Village-lived 1-Home MPS Betty, Sister, 1-A, F (home) NIL
George Independently 1-B, P
on sister’s
property.
P13 F 55 Partner Solid cancer Farm * Local Daniel, Partner 1-B, F ( home) NIL
Leanne hospital
F 60 Married Solid cancer Town * Hospice♦ NIL
P14 Andrew 1-B, F (medical
Elaine Husband practice)

P15 M 72 Married; Haematological Town * Local Nathan 1-B, F (medical NIL

Gordon Wife in malignancy hospital; Son Practice)
RACF transfer
from
TH for
EoLC
Names have been changed; reported ages are within 5 years of true age; *patient not interviewed (identified in obituary notice).
Abbreviations: FCG= family caregiver; RACF=residential aged care facility; LT= long term (permanent resident); HCP= health care
professional; CRC=colorectal cancer; A= interview during illness; B= bereavement; F= face-to-face; P= phone; EoLC= end-of-life care;
GBM= Glioblastoma multiform; DON= director of nursing; GP=general practitioner;
CN=community nurse; PCN= palliative care nurse; ca= cancer; MPS= multipurpose service.
Table 2: Meaning of home
Home is: Perspectives of participants
A place of security and [Home is] a controlled space that [we] have control of,
control where as soon as we go into a hospital we’re in
somebody else’s controlled space. (Fatumah)

A place of memories That property was where [Fatumah did] her mothering,
where she’d educated her children, because she didn’t
send them to school, so for her that was her world really,
so for her dying in that setting was I would imagine very
important to her. (Palliative care nurse PCN01)
A reflection of one’s self, If anything important was done it was always done here
value and status [on the farm] (Bruce)
A place of permanency, It’s sort of about who we are really, which might sound
continuity, and a place to silly, but a city person wouldn’t have that connection with
belong. place that we have. We’ve been here six generations now
(Paul, son of Ivan)
A familiar place, where Because he had been so sick for such a length of time it
normality was maintained. was normality for them… to have him… at home…The
progression to end stage was very normal... He might not
be responding as much, but the physicality of having him
in a bed and caring for him in a bed, normal. And maybe
that’s why it went so well. (Kevin’s palliative care nurse
PCN01)