End of Life Care in Rural Areas

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REVIEW

URRENT
C
OPINION

End-of-life care in rural areas: what is different?


Julia Downing a and Barbara A. Jackb

Purpose of review
This review explores global developments in palliative care provision in rural settings, since 2010. It
highlights models of rural palliative care provision including challenges faced in establishing services and
draws upon examples from around the world.
Recent findings
Recent literature reports developments in palliative care provision in rural and remote areas, with emerging
and innovative models of care. However, many challenges remain and practitioners need to continue to
think outside the box in terms of palliative care provision. Models for rural palliative care provision are
evolving, particularly in sub-Saharan Africa, which embrace the culture of rural communities,
demonstrating that palliative care can be effectively provided in rural and remote areas. Challenges to
palliative care provision in rural settings continue to be identified, with the overarching challenges being
mirrored in different settings and countries.
Summary
Although culture and geography will change, challenges to providing palliative care in rural settings
appear to be almost universal. Lessons learnt from developing palliative care in rural communities can be
shared and applied in different areas. Caution is raised in transplanting urban models to rural settings, thus
emphasizing learning from other rural settings to provide accessible and appropriate palliative care.
Keywords
models, palliative care, remote, rural, volunteers

INTRODUCTION
The last two decades have seen palliative care
expand, particularly in developed countries, to
becoming part of mainstream services. Policy drivers
such as the UK End of Life Care Strategy [1], coupled
with support from organizations such as the European Association of Palliative Care, and the WHO,
have resulted in palliative care being recognized as a
human right [2].
For those living in rural or remote areas, access
to palliative care can be described as sporadic, often
resulting in patients having to leave their community to receive care, or to receive suboptimal
care. Approximately, 20% of North Americans,
25% of Europeans, 25% of Canadians and 11% of
Australians reside in rural areas [3]. However, these
figures do not indicate the vast geographical masses
that are covered, for example in Canada two-thirds
of the population reside in the northern remote
areas [4]; in rural Scotland 18% are in areas covering
94% of the land mass, including nonmainland
regions [5]. Additionally, areas in the far northern
hemisphere bring additional problems of extreme
weather conditions, which can impact on travel.
Furthermore, in developing countries such as India

and sub-Saharan Africa (SSA) that have a high rural


population, the situation is more complex with vast
geographical areas, poor transport links, low numbers of healthcare workers and limited access to
medication, including morphine [6 ,7 ]. Therefore,
patients living in rural areas requiring palliative care
face a myriad of challenges that need to be addressed
to ensure they receive optimal care.
Two previous systematic reviews on palliative/
end-of-life care in the rural setting [8,9] identified
limited published work, and much of it identified
challenges in the delivery of palliative care in the
rural setting, focusing on differences between urban
and rural care, exploring rural end-of-life care,
assessing needs and the provision of education for
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a
Department of Medicine, School of Medicine, Makerere University,
Kampala, Uganda and bEvidence Based Practice Research Centre,
Faculty of Health and Social Care, Edge Hill University, Ormskirk,
England

Correspondence to Professor Julia Downing, PhD, RGN, FHEA,


Makerere University, PO Box 7072, Kampala, Uganda. Tel: +256 712
266 251 or 44 7751 879 310; e-mail: julia.downing792@btinternet.com
Curr Opin Support Palliat Care 2012, 6:391397
DOI:10.1097/SPC.0b013e328356ab1f

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www.supportiveandpalliativecare.com

Copyright Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.

End-of-life management

KEY POINTS
 Rural areas have their own specific individual needs
and models of palliative care delivery from urban
settings should be transposed with caution.
 There is a consensus of general challenges facing rural
palliative care settings including: staffing (recruitment/
retention), ongoing education of the generalist
workforce, travel over large geographical areas, lack
of regular access to physicians and equipment.
 In developing countries especially SSA, there has been
an increase in models of rural palliative care services,
many of which use a local volunteer system.
 The emergence of new technologies, including the
mobile network, are potential methods to support rural
teams and access patients.
 The expansion of evidence-based palliative care
guidelines and care pathways may be useful to support
the general workforce in rural settings.

rural healthcare providers. Primary care professionals were seen as having a key role in the
provision of end-of-life care in the rural setting,
but there are limited studies regarding their views
and needs in the field [8]. Most of the studies were
from the USA, Australia and Canada with few
researchers being responsible for more than one
study [9].
This review explores the developments in the
provision of palliative care in the rural setting
since 2010. It highlights different models of palliative care provision utilized in the rural setting, drawing upon examples from around the world. It aims
to increase understanding of the challenges facing
rural palliative care services and draws upon
examples of effective practices and developments
that can be adopted.

MODELS OF PALLIATIVE CARE


PROVISION IN THE RURAL SETTING
Those living in rural areas are generally seen as
disadvantaged in terms of many health-related outcomes, including the provision of palliative care [4].
Wilson et al. [9] identified the unique challenges for
planning and providing end-of-life care in rural
areas, along with the uniqueness of rural communities and concern that end-of-life programmes cannot just be modified from urban programmes, but
need to be tailored for the individual community.
Palliative care provision in the rural setting is based
on the premise that individuals wish, where
possible, to die at home [10], and so models of
palliative care need to embrace this.
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Recent literature shows developments in the


provision of palliative care in rural and remote areas,
with the development of innovative and new
models of care, but many of the challenges remain
and practitioners need to continue to think outside
the box in terms of palliative care provision. Articles
published since 2010 provide perspectives of the
delivery of palliative care in the rural setting from
different regions including North America, Europe
and SSA, with several researchers, particularly in
Canada, being responsible for more than one article.
In Canada and Australia, recent literature
addresses issues pertinent to models of rural palliative care, rather than the models themselves, such as
validation of a model [11 ], difference in rural and
urban care [12 ,13 ], patient perspectives [14 ,15 ],
social and ethical issues [16 ,17 ] and providers
perspectives [18 ,19 ,20 ,21]. Kelley [22] developed
a model for rural palliative care delivery that used a
community capacity development perspective
where end-of-life care is usually provided by generalist healthcare providers. This conceptual model was
then validated [11 ] using semistructured interviews in seven rural areas. The model (Table 1)
[11 ,22], adapted slightly through the validation
process, depicts a bottom-up community development approach building on existing resources and
remaining community focused. Influencing factors
on the development of services included sociodemographic characteristics, and distance from existing services, along with actions of local community
or health organizations. Acceptance of palliative
care team members, such as nurse consultants,
was more likely to occur if the individual was
internal to the community, a community resident.
Kelleys model, similar to other models from
Canada, is based on the premise that where possible,
people would like to die at home. Within the rural
community, general palliative care should be
offered as a core local service, with access to specialist palliative care consultation as appropriate. In a
study with nurses, looking at using a quality framework to assess rural palliative care, Goodridge and
Duggleby [12 ] found three emerging themes of
effectiveness and safety, patient-centredness, efficiency and timeliness. Each of these was affected
by the shortage of health professionals, for example
nurses, in the rural setting, along with the lack of
education on palliative care available for health
professionals in the rural setting.
Communication is a key concept to any model
of rural palliative care, among patients, families and
health providers. This situation was particularly an
issue when coping with the many different transitions that individuals and their families, living in
rural areas, experience. Transitions occurred in areas
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End-of-life care in rural areas Downing and Jack


Table 1. Four phases of rural palliative care development [11 ,22]
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Having required antecedent community conditions, e.g. a sense of local empowerment,


sufficient local health infrastructure, collaborative generalist practice, and so on.

2.

Experiencing a catalyst for change, e.g. a local champion, policy or education.

3.

Creating a local palliative care team: important to get the right people involved.

4.

Growing the palliative care programme, e.g. strengthening the team, engaging the community
and keeping community focused.

such as environment, relationships and roles,


physical and mental health and activities of daily
living. A process of coming to terms with what is
happening, connecting and redefining normal was
identified with key contributing factors including
timely communication, information, and support
networks, each of which must be in place within
rural palliative care provision [23 ].
In contrast to the literature from Canada, literature from SSA focuses more on the models of care
themselves, along with the challenges encountered
[6 ,24 28 ]. This situation reflects the development
of palliative care within SSA, over the past decade [6 ].
In rural SSA, the main model of palliative care provision is home-based care developed within the public health context, helping to increase accessibility
and sustainability [7 ,24 ]. Care is provided through
a multidisciplinary team, and this, along with the
multitasking nature of the teams, contributes to the
delivery of palliative care that is responsive to the
needs of patients and carers. Key issues found in
models of palliative care in three organizations in
Kenya, Uganda and Malawi are as follows [7 ]:
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(1) Palliative care provision amidst the face of poverty; patients need more than just medications.
(2) Embedding palliative care within the community.
(3) Embedding palliative care within the health
service.
(4) Using a primary healthcare approach utilizing
volunteers.
(5) The importance of palliative care being more
than end-of-life care.
(6) In contrast to within developed countries,
cancer patients access proportionally less palliative care.
(7) Resourceful approaches to new technology such
as mobile phones.

Programmes need to be responsive to local needs


and customs, and be community-based and integrated when possible into local services with clear
and accessible referral pathways between and across
services [7 ,24 ]. Central to the provision of such
care is the role of volunteers or community caregivers [7 ,24 ,25 28 ] who are trained to work with
nurses and other health professionals to identify
and care for patients in their homes. Work within
the region has shown that it is possible to expand
the reach of palliative care beyond professional caregivers through volunteers and by grafting palliative
care onto existing home-based care programmes
[24 ,26 ,28 ].
Volunteers provide physical care, as well as
education and emotional support [6 ,7 ,28 ,29 ].
One of their key roles is the identification and
referral of the patient to the palliative care teams
[6 ,7 ,28 ,29 ]. The widespread use of mobile
phones in SSA (even in homes with no electricity
or running water) enables volunteers to have close
contact with the palliative care teams. This rapid
access to the palliative care team is vital to the
success of the programme providing support for
the volunteers and alerts the palliative care team
of a potential new patient or a current patient
needing further intervention [6 ,7 ,28 ,29 ]. One
example is a programme developed by Hospice
Africa Uganda [29 ]. Volunteers commit to approximately 6 h a week and are selected by senior community leaders. They are given a bicycle and
training covering the basics of palliative care and
have ongoing monthly meetings [28 ,29 ]. On
evaluation, the programme was found to be
beneficial for patients, the palliative care team
[29 ] and volunteers who reported a high degree
of pride in the role [29 ]. The success of this programme was on the maximization of the resources
to reach out to the rural areas and become the bridge
to the palliative care team [29 ]. A finding supported
in Grant et al. [7 ] for evaluation of palliative care
programmes in Malawi. Thus, using volunteers from
the local community who know the locality, speak
the dialect and have some endorsement by the
community leaders can be an important component
for developing effective models.
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Individuals within the communities identify


how the personalized package of care has made a
difference to how they view death and dying, and
the nature and effects of disease, and that there is
greater acceptance enabling communities to provide more comprehensive care [7 ].
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End-of-life management

Volunteers also play a key part in the development of compassionate community networks
in the United Kingdom [30 ]. Based on the
neighbourhood network model in Kerela, India
[31], the model sees the dying person holistically
as part of the community, located within a number
of social networks. The model starts with the
individual community links, offering them a
mentor to help them identify existing networks
and offer sources of support. Steps in the Compassionate Community Network Model are as follows
[30 ]:
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(1) When it is clear an individual is not getting


better, a health professional who knows the
family (the mentor) discusses end-of-life issues
with them.
(2) If they want a home death, the mentor asks
them to identify different tasks that need to
be done in order to enable this to happen, for
example cooking, gardening as well as personal
care.
(3) They then identify the social network of family, friends and neighbours; mapping is done
to see what support can be provided and professional care is then slotted in around the
gaps.
(4) A co-ordinator of informal care is appointed
who liaises with the mentor.
(5) If started early enough, care is increased as the
patient becomes less well.
(6) Subsequently, volunteer networks of people
who have helped a friend or neighbour previously will be developed.
Tapping in to social networks helps to overcome
some of the problems faced in parts of Europe with
regards to providing care out of hours [32 ,33 ], an
important part of any model of palliative care provision. This also raises issues with regards to the
provision of generalist vs. specialist palliative care
in the rural settings, with most of the care being
delivered through generalists who have access to
specialists where needed.
Although differences in the models described
above exist, there are cross-cutting issues found in
each of them including the following:
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(1) The uniqueness of each community;


(2) A model that is flexible and meets the diverse
needs of rural communities;
(3) Community ownership and empowerment;
(4) A model that is embedded within the community and the health system;
(5) A model that takes into account community
health workers and volunteers;
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(6) Clear and appropriate referral networks, with


linkages between generalist and specialist palliative care;
(7) Where possible, taking care to the people,
rather than people to the place of care.

CHALLENGES
There is a general consensus that establishing palliative care services in rural settings is faced with
specific challenges (Table 2) [7 ,8,9,11 ,15 ,19 ,
20 ,24 27 ,33 ,34,35 ,36,37 ]. For example, cultural factors such as in British Columbia where
Aboriginal residents require modifications to the
planning of end-of-life care [34]. Similarly, in SSA
the need for services to focus around home care has
to be considered [6 ,7 ,28 ,29 ], and language barriers are prevalent in the more rural areas and need
to be factored into the development of services
[6 ,7 ,28 ,29 ].
Another key challenge relates to the development and sustainability of the main clinical team,
with the recognized problems of recruitment and
retention. This situation is contributed to by lone
working and social/clinical isolation, especially
when there is a large geographical area to cover
[19 ,35 ]. Separation of personal and professional
lives can also be an issue, particularly where boundaries between work and home are blurred
[19 ,37 ,38]. The limited number of clinical staff
has a clear impact on the uptake of continuing
education with staff being reluctant to attend sessions due to travel time, but also a lack of cover for
their patients [9,35 ,37 ]. This factor can potentially impact upon retention, sustainability and
the quality of care given [35 ].
Furthermore, rural clinical teams are in the main
generalist healthcare professionals. In urban areas,
palliative care services have often developed where
specialist teams have worked alongside the generalist teams, providing on-going support and education, and easy access for support in complex
cases [8]. In rural areas, teams are dispersed over
wide geographical areas. A study on three rural
British Columbia communities by Robinson et al.
[35 ] reported how healthcare professionals noted
the challenges of trying to have regular team meetings and attending clinical educational sessions.
This study also reported healthcare professionals
identifying additional specific educational needs
including symptom control, as well as psychosocial
issues. A similar finding to that reported in an earlier
systematic review by Evans et al. [8] in 2003.
Although in developed countries medical and
nursing training has normally included some palliative care education, this factor is generally limited
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End-of-life care in rural areas Downing and Jack


Table 2. Key challenges for the provision of palliative care in rural and remote settings [7 ,11 ,19 ,
20 ,24 ,33 ,35 ,37 ]
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Programmatic

For health professionals

For patients

Lack of resources

Separating personal and professional life for


healthcare team: lack of anonymity

Travelling significant distances for care

Community resistance to palliative care

Working alone in isolated roles

Limited access to multidisciplinary team

Nature of the rural environment

Need to be both specialist and generalist

Unemployment

Limited access to services

Shortage of health professionals in the rural


setting

Poverty

Poorly co-ordinated care

Difficulty in managing symptoms

Lack of access

Limited access to multidisciplinary team,


particularly physicians

Limited access to continuing educational


opportunities

Personal health beliefs and culture

How to provide palliative care in the face


of poverty

Communication

Lack of family caregivers

How to encourage early identification of


patients

Needing to be multiskilled

How to develop effective and integrated


referral systems

Surviving in palliative care

Lack of understanding of the philosophy


and principles of palliative care and
recognition of its importance
Provision of out-of-hours services
Local and health systems politics including
trends towards centralization of services
Caring for marginalized groups
Inadequate medical facilities and access
to medication such as analgesics

in content and practical experience. More recently,


dedicated blocks of specialist training in a palliative
care setting have been introduced and positively
evaluated [39]. However, this situation is not universal and there remain mixed levels of palliative
care education for the generalist workforce. In
Africa, where palliative care has been developing
in the last decade, there has been the emergence
of differing levels of education [6 ], recognizing the
need for on-going palliative care education for
the generalist workforce. Although the emergence
of new technologies such as mobile phones, Skype,
apps, smart phones, telehealth and educational
centres offering on-line learning and so on can go
somewhere to help the situation, they are reliant on
good Internet connection, something which is not
always available in rural areas [35 ,40 ].
Robinson et al. [35 ] also reported the challenges faced by the rural teams in Canada. Problems
in trying to obtain specific equipment were faced
with logistical issues. Although the equipment was
available, getting it delivered was fraught with
bureaucratic barriers. Similarly, they faced challenges surrounding anticipatory strategies around
medication and care orders, whereby neither physicians nor pharmacy services were readily available.
This latter challenge is one that is widely reported in
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the literature regarding developing countries where


limited access to physicians is coupled with a lack of
readily available morphine [6 ,7 ,25 ,28 ,29 ].
Furthermore, rural teams have limited access to
all aspects of multidisciplinary palliative care. A
study exploring patients perspectives of having to
travel into urban areas to receive palliative care
treatment reported positive outcomes of being able
to access the wider multidisciplinary team. Access to
nutritionists, healing touch, relaxation therapy
and counselling as well as symptom assessment
and intervention were positively reported [15 ].
However, the enormous cost of travel and additional
expenses, that is overnight accommodation (on
route in some cases), as well as for families, food,
parking, telephone calls and so on were all noted.
The study reported some participants cutting back
on other expenditure such as groceries due to the
financial burden incurred. The physical strain of
travelling on rough roads and the stopstart driving
of a city exacerbating patients symptoms were also
reported [15 ].
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CONCLUSION
Establishing effective palliative care for rural communities is faced with individual issues. Some are

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End-of-life management

region/country specific, for example cultural


issues; however, it appears that rural communities
share many challenges including supporting
clinical staff, recognizing their physical isolation
and difficulties in attending educational events.
Examples of effective models of rural palliative
care have been presented and lessons from them
could be drawn upon, particularly regarding
using community volunteers. The lack of access
for patients to the multidisciplinary team and
the need for the development of guidelines and
clinical pathways to support the rural staff is
worth considering. Practical issues regarding
access to equipment and medication need to be
explored and alternative systems adopted. Above
all, it is important to remember that palliative
care services in rural communities have to be
tailored to the individual communities needs
and, thus, ensure access to effective models of
service delivery and achieve the goal of a good
death for all.
Acknowledgements
Both J.D. and B.J. were involved in the review of literature
and development of the article.
Conflicts of interest
There are no conflict of interests.

REFERENCES AND RECOMMENDED


READING
Papers of particular interest, published within the annual period of review, have
been highlighted as:
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of special interest
&& of outstanding interest
Additional references related to this topic can also be found in the Current
World Literature section in this issue (pp. 415416).
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2. Brennan F. Palliative care as an international human right. J Pain Symptom
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4. Canadian Institute for Health Information. Health Research: investing in
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good progress but much further to go. BMJ Support Palliat Care 2011;
1:118122; doi:10.1136/bmjspcare-2011000057.
A lot has been achieved in palliative care in Africa in the past decade and this article
is useful in setting out some of the key milestones achieved during that time, and
setting the scene for future developments.
7. Grant L, Brown J, Leng M, et al. Palliative care making a difference in rural
&&
Uganda, Kenya, Malawi: three rapid evaluation field studies. BMC Pall Care
2011; 10:8; doi:10.1186/1472-684x-10-8.
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11. Kelley ML, Williams A, DeMiglio L, Mettam H. Developing rural palliative care:
&&
validating a conceptual model. Rural Remote Health 2011; 11:1717.
This paper is an important article that validates a model of rural palliative care
delivery previously developed. It is important that other models are also validated;
however, this is the first of its kind, and lessons can be learnt from the methodology
used as well as the outcome of the validation exercise.
12. Goodridge D, Duggleby W. Using a quality framework to assess rural
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palliative care. J Palliat Care 2010; 26:141150.
This article approached the assessment of rural palliative care from a quality
perspective, which despite the aims of palliative care, can sometimes be neglected; hence, it is a useful article to remind us of the importance of utilizing a
quality framework.
13. Waldrop D, Kirkendall AM. Rural-urban differences in end-of-life care: im&
plications for practice. Soc Work Healthcare 2010; 49:263289;
doi:10.1080/00981380903364742.
This paper is one of the only articles to address the ruralurban differences in the
provision of palliative care from a social work perspective. It is a useful addition to
the literature.
14. Duggleby WD, Penz K, Leipert BD, et al. I am part of the community but... the
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changing context of rural living for persons with advanced cancer and their
families. Rural Remote Health 2011; 11:1733.
The importance of being a part of the community, a social being and belonging are
stressed in this article. Lessons learnt can be applied in other settings.
15. Pesut B, Robinson CA, Bottorff JL, et al. On the road again: patient per&&
spectives on commuting for palliative care. Palliat Support Care 2010;
8:187195; doi:10.1017/S1478951509990940.
Travel is a big issue for patients living in the rural setting. This article encourages us
to look at some of the challenges to the provision of palliative care in rural areas
from a different perspective, and identifies key issues related to distance and
geography.
16. Castleden H, Crooks VA, Hanlon N, Schuurman N. Providers perceptions of
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aboriginal palliative care in British Columbias rural interior. Health Soc Care
Community 2010; 18:483491; doi:10.111/j.1365-2524.2919.00922.x.
Only a couple of articles address the issue of providing palliative care to minority
groups within the rural setting. Thus, combing the challenges of hard-to-reach
populations and people groups.
17. Pesut B, Bottorff JL, Robinson CA. Be known, be available, be mutual: a
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qualitative ethical analysis of social values in rural palliative care. BMC Med
Ethics 2011; 12:19.
This article addresses rural palliative care from an ethical perspective looking at
social values. It is one of the first articles of its kind and encourages readers to think
of the provision of palliative care in the rural setting from a different, yet important,
position.
18. Castleden H, Crooks VA, Schuurman N, Hanlon N. Its not necessarily the
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distance on the map... using place as an analytic tool to elucidate geographic
issues central to rural Palliative care. Health Place 2010; 16:284290;
doi:10.1016/j.healthplace.2009.10.011.
This article is important in elucidating the issues in living in the rural setting, which
may not just be distance, but also impacted by geography, weather conditions,
flooding, and so on. Thus, remoteness may not just be a matter of distance, but also
a geographical construct.
19. Kaasalainen S, Brazil K, Wilson DM, et al. Palliative care nursing in rural and
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urban community settings: a comparative analysis. Int J Palliat Nurs 2011;
17:344352.
Although lip service is often paid to the challenges faced by nurses, this important
article really gets to grip with the differing role of the nurse in the urban and rural
settings and some of the challenges faced. It is one of the key articles on this
subject written in the past few years.
20. Crooks VA, Castleden H, Hanlon N, Schuurman N. Heated political dynamics
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exist?..: examining the politics of palliative care in rural British Columbia,
Canada. Palliat Med 2011; 25:2635; doi:10.1177/0269216310378784.
This paper is one of the only articles that address the issue of politics, and the
impact that this has on the provision of palliative care in the rural setting. Lessons
can be learnt that can be applied in other settings.
21. OConnor T. Meeting the demands of rural palliative care nursing: providing
palliative nursing care over a large rural areas poses very particular challenges. Nursing N Z 2011. http://findarticles.com/p/articles/mi_hb4839/
is_4_17/ai_n57658060/pg_2/ [Accessed 20 February 2012].
22. Kelley ML. Developing rural communities capacity for palliative care: a
conceptual model. J Palliat Care 2007; 23:143153.
23. Duggleby WD, Penz K, Goodridge D, et al. The transition experience of rural
&&
older persons with advanced cancer and their families: a grounded theory
study. BMC Palliat Care 2010; 9:5.
The issue of transitions in care, both in children and the elderly, have received much
attention recently. This paper is the first article to address the issue of transitions in
the elderly living in the rural setting, with advanced cancer, and is, therefore, an
important article in the field.

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End-of-life care in rural areas Downing and Jack


24. Downing J, Powell R, Mwangi-Powell FN. Home-based palliative care in subSaharan Africa. Home Healthc Nurse 2010; 28:298307.
Home-based care is the key model of palliative care provision in SSA. This article
draws out some of the challenges faced, but also how these challenges can be
overcome and the lessons learnt that can be applied in other settings.
25. Nanney E, Smith S, Hartwig K, Mmbando P. Scaling up palliative care services
&
in rural Tanzania. J Pain Symptom Manage 2010; 40:1518.
This paper is one of the first articles to discuss the scaling-up of palliative care in a
rural setting through a faith-based organization. It demonstrates the values of an
existing network of care for scaling up palliative care.
26. Defilippi KM, Cameron S. Expanding the reach of palliative care to community&
based home care programs. J Pain Symptom Manage 2010; 40:35;
doi:19.1016/j.jpainsymman.210.04.004.
This article highlights the scaling up of palliative care provision in South Africa
through community-based programmes. It is also one of the first in the region to
demonstrate the use of an outcome tool to review outcomes of care within the
community home-based care setting.
27. Di Sorbo PG, Chifamba DD, Masterjohn J, et al. The Zimbabwe rural palliative
&
care initiative: PCI-Z. J Pain Symptom Manage 2010; 40:1922;
doi:10.1016/j.jpainsymman.2010.04.005.
Since the initial work done in Zimbabwe, there has not been much written about the
developments of palliative care. This article is, therefore, important in setting the
scene for palliative care provision in Zimbabwe and the challenges when working in
a difficult environment.
28. Jack BA, Kirton J, Birakurataki J, Merriman A. A bridge to the hospice: the
&
impact of a Community Volunteer Programme in Uganda. Palliat Med 2011;
25:706715; doi:10.1177/0269216310397566.
This paper is one of the first articles to address the impact of community volunteers
in palliative care programmes in SSA and presents a model that could be
replicated elsewhere.
29. Jack BA, Kirton JA, Birakurataki J, Merriman A. The personal value of being a
&
palliative care Community Volunteer Worker in Uganda: a qualitative study.
Palliat Med; 2012 26:753 originally published online 15 September 2011.
doi:10.1177/0269216311413628.
This paper is one of the first articles to address the personal impact of being a
palliative care community volunteer in SSA. It also impacts the way that they are
perceived in the community, which is critical for community ownership of the
programme.
30. Abel J, Bowra J, Walter T, Howarth G. Compassionate community networks:
&&
supporting home dying. BMJ Support Palliat Care 2012; 1:129133;
doi:10.1136/bmjspcare-2011-000068.
The community-based palliative care model from Kerala has been discussed, and
lessons learnt applied in different settings. However, this paper is one of the first
articles to demonstrate applying those lessons learnt in a completely different
context and in a developed country setting. The importance of community vs.
individuals is stressed and the resultant community response.
&

31. Kumar SK. Kerela, India: a regional community-based palliative care model.
J Pain Symptom Manage 2007; 33:623627.
32. Taubert M, Noble SIR, Nelson A. What challenges good palliative care
&&
provision out-of-hours? A qualitative interview study of out-of-hours general
practitioners. BMJ Support Palliat Care 2011; 1:1318; doi:10.1136/
bmjspcare-2011-000015.
This article draws out the added value from this study, highlighting what was
already known about the topic, and what the study adds. Key challenges are
identified, which while they are similar to those found in other articles, these are
applied specifically to the General Practice setting, and, therefore, adds a different
dimension, and validates some of the challenges within developed country settings.
33. Fergus CJY, Chinn DJ, Murray SA. Assessing and improving out-of-hours
&
palliative care in a deprived community: a rapid appraisal study. Palliat Med
2010; 24:493500; doi:10.1177/0269216309356030.
This paper is a good example of the use of rapid appraisal techniques in evaluating
out-of-hours service provision in the UK. The recommendations for out-of-hours
service are useful when developing a model of rural palliative care provision.
34. Allan DE, Waskiewich S, Stajdubar KI, Bidgood D. Use of palliative care
services in a semirural program in British Columbia. Can J Rural Med 2009;
14:1015.
35. Robinson CA, Pesut B, Bottorff JL. Issues in rural palliative care: views from
&&
the countryside. J Rural Health 2010; 26:7884; doi: 10.1111/j.17480361.2009.00268.x.
This is a key article addressing issues in providing and receiving palliative care in
the rural setting and discusses relationships as well as healthcare provision. The
methodology used enables the authors to highlight key issues, which could be
applied to the provision of palliative care in other rural settings.
36. Van Vorst RF, Crane LA, Barton PL, et al. Barriers to quality care for dying
patients in rural communities. J Rural Health 2006; 22:248253.
37. Goodridge D, Lawson J, Rennie D, Marciniuk D. Rural/urban differences in
&
healthcare utilisation and place of death for persons with respiratory illness in
the last year of life. Rural Remote Health 2010; 10:1349.
Most of the literature focuses on those with cancer, or in SSA or HIV. This paper is
one of the only articles to address the issues of palliative care in the rural setting for
people with respiratory illness.
38. Dunham W, Bolden J, Kvale E. Obstacles to the delivery of acceptable
standards of care in rural home hospices. Am J Hosp Palliat Care 2003;
20:259261.
39. Mason SR, Ellershaw JE. Undergraduate training in palliative medicine: is
more necessarily better? Palliat Med 2010; 24:306309.
40. Nwosu AC, Mason S. Palliative medicine and smart phones: an opportunity for
&
innovation? BMJ Support Palliat Care 2012; 2:7577.
The use of smart phones and modern technology is going to be key in the ongoing
development of palliative care in the rural settings and this article is useful in setting
out the status to date in this field.

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