Professional Documents
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End of Life Care in Rural Areas
End of Life Care in Rural Areas
End of Life Care in Rural Areas
URRENT
C
OPINION
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
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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
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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.
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Creating a local palliative care team: important to get the right people involved.
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Growing the palliative care programme, e.g. strengthening the team, engaging the community
and keeping community focused.
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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.
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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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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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Programmatic
For patients
Lack of resources
Unemployment
Poverty
Lack of access
Communication
Needing to be multiskilled
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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
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9. Wilson DM, Justice C, Sheps S, et al. Planning and providing end-of-life care
in rural areas. J Rural Health 2006; 22:174181; doi: 10.1111/j.17480361.2006.00028.x.
10. Gomes B, Higginson IJ, Calanzani N, et al. Preferences for place of death if faced
with advanced cancer: a population survey in England, Flanders, Germany, Italy,
The Netherlands, Portugal and Spain. Ann Oncol 2012 Published 16 February
2012; [Epub ahead of print]. doi10.1093/annonc/mdr602.
11. Kelley ML, Williams A, DeMiglio L, Mettam H. Developing rural palliative care:
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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
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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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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
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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
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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
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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
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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
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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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