USA: +1(669)289-8683 
Sign in
Counselors As Contributors to Health Care Reform
The training of counselor educators and supervisors provides for instruction in the wellness model, developmental stages of lifetime adjustment, early intervention and prevention, and empowerment of clients. These values seem perfectly matched for the re-focusing of health care on the early stages of care rather than end-of-life care. An example of a health care model that utilizes early identification of mental health issues and has a client-centered approach to care is Intermountain Healthcare’s Mental Health Integration model.
Intermountain’s Mental Health Integration involves licensed mental health professionals working side-by-side with primary care physicians. Together they are administering or reviewing clients’ mental health screening instruments, consulting with physicians on mental health issues, providing same-day brief counseling and psycho-education, recommending referral for chronic and severe patients, and working in a health care team along with other professionals. This model engages community agencies such as the National Alliance for Mental Illness (NAMI) to support patients and families in the treatment process. Studies at Intermountain indicate that the Mental Health Integration model provides higher quality health care at revenue-neutral or reduced costs. The idea is for mental health workers to collaborate across professional fields to increase quality health care.
The Committee on Crossing the Quality Chasm: Adaptation to Mental Health and Addictive Disorders offers the following six aims to achieve high-quality health care:
“The Six Aims of High-Quality Health Care:
- Safe—avoiding injuries to patients from the care that is intended to help them.
- Effective—providing services based on scientific knowledge to all who could benefit and refraining from providing services to those not likely to benefit.
- Patient-centered—providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions.
Timely—reducing waits and sometimes harmful delays for both those who receive and those who give care.
Efficient—avoiding waste, in particular waste of equipment, supplies, ideas, and energy.
Equitable—providing care that does not vary in quality because of personal characteristics such as gender, ethnicity, geographic location, and socioeconomic status”
Source: Institute of Medicine (Eds.). (2006). Improving the quality of health care for mental and substance-use conditions. Washington, DC: The National Academies Press. Retrieved from
http://books.nap.edu/openbook.php?record_id=11470&page=57
To prepare for this Discussion:
Review the article, “Integration of Mental Health into Primary Health care in Uganda: Opportunities and Challenges.” Consider the challenges to integrating mental health care into primary care and think about strategies for overcoming these challenges.
Review the article, “Far West Area Health Service Mental Health Integration Project: Model for Rural Australia,” and think about how mental health care can be improved by using a primary health care model.
Review the article, “Reducing Harm Through Quality Improvement.” Consider the challenges and opportunities presented by Intermountain Healthcare’s mental health integration quality improvement program.
Think about how you think the implementation of the mental health integration model might affect you personally.
With these thoughts in mind:
Post a (200 Word APA Format) an explanation of how you think you would be affected personally by the implementation of the mental heath integration model. Be specific, using the model and your situation to illustrate your points.
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 37]
Article
Integration of mental health into primary
health care in Uganda: opportunities
and challenges
Fred N Kigozi MBChB MMed (Psychiatry)
MD, Senior Consultant Psychiatrist/Executive Director, Butabika National Referral and Teaching Mental
Hospital, Uganda
Joshua Ssebunnya BSc MSc (Clinical Psychology)
Research Officer, Mental Health and Poverty Project, Makerere University, Butabika National Mental
Hospital, Uganda
Background
Worldwide, a number of reforms have been under-
taken with the intention of improving access to
mental health services. Notable among these is the
integration of mental health services into primary
health care (PHC), which has been one of the most
fundamental healthcare reform recommendations
globally.1–3
Providing mental health services in PHC involves
diagnosing and treating people with common mental
disorders within the general framework of available
health services, putting in place strategies to prevent
mental disorders, ensuring that primary healthcare
workers are able to apply key psychosocial and behav-
ioural science skills, as well as ensuring an efficient
referral system for those who require more special-
ised care.2 However, because of the inadequacy of
the referral services, the same system and human
resources are, from time to time, called upon to
ABSTRACT
Background Worldwide, a number of reforms
have been undertaken with the intention of im-
proving access to mental health services. Notable
among these is the integration of mental health
services into primary health care, which has been
one of the most fundamental healthcare reform
recommendations globally.
Objectives This paper describes the opportun-
ities for and challenges to the integration of men-
tal health into primary health care in Uganda, as
identified in a wider study, aimed at exploring
the policy interventions required to address the
vicious cycle of mental ill-health and poverty.
Methods Semi-structured interviews and focus
group discussions (FGDs) were conducted with
purposefully selected mental health stakeholders
from various sectors. The interviews and FGDs were
audio-recorded, and transcripts coded on the basis
of a pre-determined coding frame. Thematic anal-
ysis of the data was conducted using NVivo7,
adopting a framework analysis approach.
Results The participants identified a number of
opportunities that could be exploited to strengthen
the integration process. Notable among these was
the political will and prioritisation of mental
health at policy level. Poor appreciation of the
integration process and attitudinal problems
emerged as the most pressing challenges for inte-
gration of mental health into primary
health care.
Conclusion Irrespective of the various oppor-
tunities in place, the integration of mental health
into primary health care has not yet been fully
realised, as it faces a number of challenges within
and outside the health sector. This calls for more
concerted efforts to scale up activities for effective
integration of mental health care into primary
health care.
Keywords: integration, mental health, policy,
primary healthcare, Uganda
Mental Health in Family Medicine 2009;6:37–42 # 2009 Radcliffe Publishing
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 38]
FN Kigozi and J Ssebunnya38
manage severe mental disorders such as psychoses
and manic-depressive illness. The training of PHC
workers has therefore involved empowering them to
handle some of the key aspects of the severe mental
disorders to some extent.4 The advantages of inte-
grating mental health services into PHC include,
among others: reduced stigma for people with men-
tal disorders and their families, improved access to
care, human rights protection, reduced chronicity
and improved social integration, as well as improve-
ment in the human resource capacity for mental
health.5 Mental health treatment in primary care,
compared with the previous institutional care model,
has been noted to improve access, availability and
affordability of services, thereby producing better
outcomes.6
Various initiatives and strategies have been adopted
by countries to operationalise the integration of
mental health into PHC. In Uganda, cluster 4 of
the framework for delivery of the Minimum Health
Care Package comprises the non-communicable dis-
eases, of which mental health and substance abuse
are key elements.4 Primary care is the basic philos-
ophy and strategy for national health development
in Uganda, and the ministry of health has an elab-
orate decentralised structure for the delivery of
health services, which provides a conducive envir-
onment and increased access to mental health ser-
vices.6 The activities that have been undertaken in
Uganda include, among others: inclusion of mental
health as one of the components of the National
Mental Health Care Package, training and recruitment
of mental health professionals, in-service training of
general health workers in mental health, and mak-
ing psychotropic medicines readily available. How-
ever, despite the efforts, effective integration of mental
health into PHC has been noted to still be weak, with
a number of barriers.7,8
In this paper, we explore the opportunities and
challenges to integration of mental health into PHC,
as identified by various stakeholders in Uganda. The
paper is based on findings of a wider study that
explored the policy interventions required to address
the vicious cycle of mental ill-health and poverty in
Ghana, South Africa, Uganda and Zambia, through
the Mental Health and Poverty Research Project.9
Methods
Semi-structured interviews (SSIs) and focus group
discussions (FGDs) were conducted with a variety of
mental health stakeholders in Uganda. Individual
SSIs were used as they are an effective qualitative
method for learning about the perspectives of indi-
viduals in relation to a particular topic.10 These
interviews also allowed for detailed exploration of
a particular individual’s point of view. The FGDs
were conducted with some relatively homogenous
groups of participants (such as nurses or teachers), in
order to capture a range of opinions within these
groups, using the limited time and resources that
were available.
Selection of the participants was done purpose-
fully, based on a number of principles: participants
represented a range of key mental health organis-
ations in Uganda; they held specialised knowledge
or had specific experience related to mental health
policy, mental health services and poverty. In total,
62 semi-structured interviews and six FGDs (each
consisting of 5–9 participants) were conducted over
a six-month period.
The FGDs and interviews were conducted in
English, except for two interviews. The two users
who could not speak English freely were interviewed
in the local language, and the interviews were
translated to English. As required for this sort of
research, ethical approval was provided by the ethics
committee and the office of the Director General of
Health Services in the Ministry of Health. Written
informed consent was obtained from all the partici-
pants. The interviews and FGDs were audio-recorded
and transcribed verbatim. The transcriptions were
then coded and entered into NVivo7 qualitative
data-analysis software.
Thematic analysis of the data was conducted
using a framework analysis approach. This approach
was explicitly developed in the context of applied
research, and is gaining popularity in health policy
and systems research.10 Using this approach, certain
themes and sub-themes were collectively agreed upon
by the investigators at all the research sites, based on
the objectives of the study. A single framework for
analysis was thus developed, and the transcripts were
coded on the basis of this pre-determined coding
frame. Thereafter, specific themes emerging from
the interviews were added into the framework in the
process of conducting the analysis, and transcripts
were coded accordingly.
Findings
Opportunities for integration of mental
health care
In this section, we present the findings in relation to
the opportunities for and challenges to the inte-
gration of mental health into primary health care.
It was noted that there is growing recognition of
mental health as an important public health and
development issue in Uganda. Mental disorders have
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 39]
Integration of mental health care into primary care in Uganda 39
been recognised to be not only a clinical problem
but also a serious public health problem in the
country, resulting in the inclusion of mental health
as one of the components of the National Minimum
Health Care Package.
The presence of political will and commitment at
the policy level were noted to provide an environ-
ment conducive for the integration process. Over
the last decade, the government of Uganda has made
attempts to formulate a mental health policy after
recognising an increase in mental health-related
problems in the country. The policy strongly em-
phasises the integration of mental health into gen-
eral health care up to the community level as one of
the strategies to strengthen mental health services
in the country. Furthermore, integration is a policy
requirement and the process is driven directly from
national level. This therefore provides a conducive
framework for integration even at the lower
levels.
It was noted that the national health policy rec-
ognises mental health care as a key component of
the National Minimum Health Care Package. This is
backed by the fact that mental health has a separate
budget line within the Ministry of Health budget.
Some of the Ministry of Health officials identified
good leadership in mental health, to which they
attributed significant achievements that have been
realised in mental health service delivery over the
past few years.
It emerged that there is wide availability of general
health workers and physicians who can be trained in
a well-co-ordinated plan. In addition to this, there
has been improved training and recruitment of
specialised and other allied health workers in mental
health to facilitate the integration process. The cur-
ricula for medical training institutions were reviewed
to increase the number of hours of exposure to
mental health issues. A well-co-ordinated arrange-
ment for both pre-service and in-service training of
staff in mental health has greatly contributed to the
smooth progress of the integration process.
It was reported that there has been an improved
system of supply of medicines for the past decade,
enabling the provision of psychotropic medicines.
The Ministry of Health’s guidelines allow general
health workers to prescribe and administer psycho-
tropic medicines on the Uganda Essential Drug List.
It was further noted that at the Ministry of Health
headquarters, there is a ring-fenced budget for men-
tal health medicines.
It was further observed that there is considerable
involvement of other players, such as external de-
velopment partners, civil society organisations, tra-
ditional healers, and other relevant sectors. More
non-government organisations (NGOs) involved in
mental health work have facilitated the reduction
of stigma and discrimination against people with
mental illness, resulting in improved demand for
services.
The existence of a decentralised health system was
also believed to facilitate the integration process. It
provides for an improved supervisory system from
Ministry of Health headquarters to districts. Coupled
with all the above, there is an improved countrywide
acceptance of mental health and mental health
problems as an essential component of the diseases
to be handled in health facilities over the years.
It was further noted that there is increased com-
munity participation through selected community
resource personnel (village health teams). Training
of these resource personnel in mental health was
believed to be an excellent opportunity for strength-
ening community-based care as well as integration
of mental health into PHC.
Challenges
It was noted that integration, as a policy recommen-
dation, has been widely accepted and proclaimed,
but has not yet been fully institutionalised in a
guided manner at all levels of care. This was attrib-
uted to a number of challenges and barriers.
First, it emerged that there is limited appreciation
of integration, and what integration actually entails.
Some healthcare managers claimed to have inte-
grated mental health services into PHC but could
not identify any mental health aspects in their health
programme, further arguing that mental health fea-
tures indirectly in the general healthcare activities:
‘… if you look through my work plan here, you will
not easily tease a bit of mental health; but it is
integrated within. I mean we have the health sector
strategic plan of which we are looking at how we
really spell out which direction we should be taking
for mental health. So, that is basically it. We have
it in plan, but implementation may be rather
different.’ (SSI, district health services manager)
A particularly striking finding was that even in the
absence of mental health personnel, PHC workers
trained in mental health, and explicit mental health
plans, some health managers maintained that men-
tal health care is part of the service delivery as an
integrated component; this point was echoed by
one of the context informants:
‘… as of now, I wouldn’t say that its activities are
really teased out. They are completely integrated
into our work of PHC. Well, as a district we don’t
have a particular unit that handles mental health
as such and I would say we don’t have many
specialists. But by and large, it doesn’t mean that
mental health is not completely taken care of … in
one way or another we may not be so specialised
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 40]
FN Kigozi and J Ssebunnya40
but we can do something about mental health.’
(SSI, district health services manager)
He added:
‘… indirect … indirectly integrated within the
network of treatment and care that we have. We
may not be particularly targeting mental illness
but we are treating a person holistically.’
The health managers further believed that all health
workers receive some training in mental health during
their pre-service training, and are therefore able
to attend to the mental health needs of patients,
although this was not clearly demonstrated in prac-
tice. This casts doubt as regards their understanding
of integration, and their enthusiasm to have mental
health services in place.
In relation to knowledge and skills in mental
health, most general health workers are ill-equipped,
with very few having had some training in mental
health care. With the limited knowledge on mental
health, many general health workers admitted know-
ing mental illness only by the severe forms – char-
acterised by psychotic features. They thus fail to
identify and attend to those whose mental health
problems do not present with obvious psychiatric
symptoms, resulting in fewer cases being reported.
This has implications regarding resource allocation,
to the disadvantage of mental health.
Furthermore, the general health workers exhibited
poor appreciation of what their role is in relation to
care for people with mental illness. It emerged that
most PHC workers with basic training in mental
health do not regard managing people with mental
illness as their primary role, other than identifi-
cation and referral to the mental hospital. Problems
of understaffing were noted to be further compli-
cated by the fact that there are still few experts to
provide technical support and supervision, particu-
larly to the health workers at the lower levels of care.
Even where support supervision is carried out, it has
been noted to be quite irregular.
The widespread negative attitude towards mental
health and mental disorders was noted to play a
significant role. It emerged that interest in mental
health among most general health workers was still
very low. Most of the general health workers who
received orientation in mental health never had an
interest in mental health, and never developed an
interest later, as they continue to disregard mental
health. One PHC doctor affirmed that although they
currently spend relatively longer time training in
mental health at the medical school than in the past,
their interest still remains low and the attitude
would take longer to change.
‘… Yes, we get the orientation in mental health but
the attitude doesn’t change easily. The time is not
enough to change the attitude and develop
interest.’ (SSI, PHC doctor, urban district)
Another important barrier that was either pointed
out directly or alluded to was the fact that mental
health care is still under-prioritised at the lower
levels, which is partly reflected by a reluctance to
recruit mental health professionals at lower levels,
and very limited or no financing of mental health
activities. Some of the health managers admitted
disregarding mental health when it comes to resource
allocation. This is further complicated by the fact
that there are limited resources for the health sector
generally, which makes it hard to balance com-
munity and hospital-based mental health care. At
district level, the small budgets intended to facilitate
mental health activities in some health facilities are
often not realised for that purpose. Some health
managers argued that mental health draws from
the general PHC budgets as an integrated com-
ponent, but with no pre-determined budgetary allo-
cations.
It was noted that mental health drugs are included
on the essential drug list and efforts are made to
distribute these drugs. However, supply was reported
to be irregular, with frequent emptying of stocks,
which interferes with smooth service delivery. Re-
striction on prescription of psychotropic medicines
by the PHC nurses was also identified as an obstacle
to service delivery at the lower levels of care, which
greatly depends on these nurses.
Some of the participants, however, believed that
demand for mental health services also constitutes a
significant challenge as regards the integration of
mental health services. They cited poor help-seeking
behaviour, whereby many patients tend to seek help
from traditional healers or faith healers instead of
the health facilities. However, the problem of poor
help-seeking behaviour was also partly attributed to
the fact that the public believes that specialised
mental health services are not readily available in
all health facilities.
Discussion
According to the study findings, it was clear that
some health managers believe the integration of
mental health into PHC occurs automatically, even in
absence of deliberate efforts for its operationalisation.
It should be noted that integration of mental health
into PHC is a national health policy requirement,
with specific targets such as increasing community
access to mental health services by at least 50%,4
which calls for well-planned efforts and strategies.
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 41]
Integration of mental health care into primary care in Uganda 41
This was found to be lacking at various levels, where
it was nevertheless claimed that mental health is
integrated into PHC. For example, even in the
absence of any mental health activities, one health
manager at district level maintained that mental
health services were available, integrated into gen-
eral health care indirectly. The study findings suggest
an obvious need to educate healthcare managers
and workers on what integration entails and the
effective implementation strategies.
The findings further suggested that political will
and commitment as well as good leadership are a
pre-requisite for effective integration of mental health
into PHC. It was, however, noted that the strong
political will and commitment for mental health are
mostly at the central level, and less at district level.
This inadequate political support manifests in lim-
ited resource allocation as well as low priority for the
recruitment of human resources for mental health
at the lower centres.
It should be noted that although there is a system
in place for training general health workers in men-
tal health, the number of those who have received
this training is quite small. Furthermore, most health
workers trained before the inclusion of a mental
health component in the curricula for health
workers.
Therefore, many health workers still lack knowledge
in mental health. The situation is further complicated
by the absence of regular supervisory visits from the
centre as well as a lack of continuous professional
development. Some of the health workers, including
those who had received training in mental health
care, confessed a lack of interest or a negative atti-
tude that still prevails in relation to mental health.
Training should therefore be tailored in such a way
that it is not only designed to impart mental health
knowledge, but also aims to change attitudes. Fur-
thermore, training arrangements need to take ac-
count of loss of knowledge over time among health
workers.
Inclusion of psychotropic drugs on the Essential
Drug List and a ring-fenced budget for mental health
drugs are positive aspects favouring improved men-
tal health care. However, besides the frequent emp-
tying of stocks, it is not clear to what extent the
medicines are readily available at the lower health
facilities. Given the strict restrictions on prescrip-
tion of psychotropic drugs by general nurses, avail-
ability of medicines would not have a significant
impact if they cannot be readily dispensed and used.
This emphasises a need to ensure that the drugs are
readily available and that health workers are able to
dispense them.
In line with the above, participants identified
poor help-seeking behaviour as one of the chal-
lenges. This implies a need for corrective measures
for effective service delivery and utilisation.
Furthermore, it should be noted that under the
decentralised system, authority lies with the man-
agement at district level to identify their priorities
and allocate resources accordingly. While some par-
ticipants believed that this system has also facilitated
the integration process, others viewed the decentra-
lisation system as one of the barriers. They argued
that mental health is well prioritised at the macro
level but not the district level, as evidenced by the
lack of mental health professionals in some districts.
A significant difference was evident in the mental
health systems of the rural and urban districts,
especially in relation to staffing for mental health;
this is attributable to the difference in prioritisation
by managers in rural and urban districts. This im-
plies that although mental health is a priority area at
policy level, the prioritisation has not moved down
to district level.
In view of the above, there is a need for the
Ministry of Health to closely monitor implemen-
tation of the various priority areas at the lower
levels.
Overall, the study findings highlighted a number
of effective current strategies for the integration of
mental health into PHC in Uganda, similar to anec-
dotal individual experiences and perceptions on
integration of mental health into PHC as reported
in Integrating Mental Health into Primary Care: a global
perspective.6
Conclusion
The study findings implied that this important
policy requirement of integration has not yet been
fully realised, as a result of a number of challenges
within and outside the health sector. The fact that
mental health is a component of the Minimum
Health Care Package implies an obligation for all
health managers to ensure that mental health ser-
vices exist at various levels of care, which seems,
however, not to be happening. This therefore calls
for a deliberate strategy by the health departments
concerned to scale up activities for effective inte-
gration of mental health into PHC, in order to ensure
accessibility and equity in mental health service
delivery.
ACKNOWLEDGEMENTS
This paper reports on the findings from the first
phase of the Mental Health and Poverty Project
(MHaPP). MHaPP is a Research Programme Con-
sortium (RPC) funded by the UK Department for
C:/Postscript/09_Kigozi_MHFM6_1D3.3d – 14/9/9 – 15:22
[This page: 42]
FN Kigozi and J Ssebunnya42
International Development (DfID) (RPC HD6 2005-
2010) for the benefit of developing countries. RPC
members among others include Alan J Flisher (Di-
rector) and Crick Lund (Co-ordinator) (University of
Cape Town, Republic of South Africa (RSA)); Therese
Agossou, Natalie Drew, Edwige Faydi and Michelle
Funk (World Health Organization); Arvin Bhana
(Human Sciences Research Council, RSA); Victor
Doku (Kintampo Health Research Centre, Ghana);
Andrew Green and Mayeh Omar (University of
Leeds, UK); Fred Kigozi (Butabika Hospital, Uganda);
Martin Knapp (University of London, UK); John
Mayeya (Ministry of Health, Zambia); Eva N Mulutsi
(Department of Health, RSA); Sheila Zaramba
Ndyanabangi (Ministry of Health, Uganda); Angela
Ofori-Atta (University of Ghana); Akwasi Osei (Ghana
Health Service); and Inge Petersen (University of
KwaZulu-Natal, RSA).
REFERENCES
1 Kigozi F. Integrating mental health into primary
health care – Uganda’s experience. South African
Psychiatry Review 2007;10:17–19.
2 World Health Organization (WHO). World Health
Report 2001, Mental Health: new understanding, new
hope. Geneva: WHO, 2001.
3 Sherer R. Mental health care in the developing
world. Psychiatric Times 2002;19:1–6.
4 Ministry of Health. Health Sector Strategic Plan II.
Kampala, Uganda: Ministry of Health, 2005.
5 WHO, 2007. Integrating Mental Health Services into
Primary Health Care. Mental Health Policy, Planning
and Service Development Information Sheet, Sheet
3). Geneva: World Health Organization, 2007.
www.who.int/mental_health/policy/services/en/
index.html (accessed 14 July 2009).
6 WHO and World Organization of Family Doctors
(Wonca). Integrating Mental Health into Primary Care:
a global perspective. Singapore: WHO and Wonca,
2008. www.who.int/mental_health/policy/Mental
%20health%20+%20primary%20care-%20final
%20low-res%20140908 (accessed 14 July 2009).
7 Ssebunnya J, Kigozi F, Kizza D, Ndyanabangi S and
MHaPP. Integration of mental health into primary
health care: a case of one rural district in Uganda.
African Journal of Psychiatry (in press).
8 Kigozi F, Ssebunnya J, Ndyanabangi S et al. A
Situational Analysis of the Mental Health System in
Uganda. 2008 (unpublished)
9 Flisher AJ, Lund C, Funk M et al. Mental health
policy development and implementation in four
African countries. Journal of Health Psychology 2007;
12:505–16.
10 Ritchie J and Spencer L. Qualitative data analysis for
applied policy research. In: Bryman A and Burgess R
(eds) Analysing Qualitative Data. London and New
York: Routledge, 1994, pp. 172–94.
FUNDING
We thank the British Department for International
Development (DfID) for funding this RPC.
CONFLICTS OF INTEREST
None.
ADDRESS FOR CORRESPONDENCE
Fred N Kigozi, Executive Director, Butabika National
Referral Mental Hospital, PO Box 7017, Kampala,
Uganda. Tel: +256 414 504376; email: fredkigozi@
yahoo.com/buthosp@infocom.co.ug
Accepted 13 July 2009
Aust
.
J. Rural Health (2006) 14, 105–110
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc. doi: 10.1111/j.1440-1584.2006.00777.x
Blackwell Publishing AsiaMelbourne, AustraliaAJRAustralian Journal of Rural Health1038-52822006 National Rural Health
Alliance Inc.? 2006143105110Original ArticleFAR WEST MENTAL HEALTH INTEGRATION PROJECTD. A. PERKINS
ET AL.
Correspondence: Dr David Perkins, CEPHRIS, PO Box 2087,
Wollongong 2500, New South Wales, Australia. Email:
david.perkins@unsw.edu.au
Accepted for publication 15 February 2006.
Original Article
Far West Area Health Service Mental Health Integration
Project: Model for rural Australia?
David A. Perkins,1 Russell Roberts,2 Tuana Sanders2 and Alan Rosen2,3,4,5,6
1Centre for Equity and Primary Health Research in the Illawarra and Shoalhaven, University of New
South Wales, Sydney, 2Greater Western Area Health Service, Orange and Broken Hill, 3Royal North Shore
Hospital and 4Community Mental Health Services, 5School of Public Health, University of Wollongong,
Wollongong, and 6Department of Psychological Medicine, University of Sydney, Sydney, New South
Wales, Australia
Abstract
Objective: To see if a new model of service delivery
ensures that individuals with a mental illness in rura
l
and remote settings could be assessed, treated and cared
for in a more appropriate way.
Design: Community mental health teams (CMHTs),
general practitioners (GP) and other agencies were pro-
vided with clinical and broader support services by con-
sultant psychiatrists from public and private sectors.
The occasions of service were logged, audited and rele-
vant provider groups were interviewed. Ethics approval
was provided by Human Research Ethics Community
of University of New South Wales.
Setting: Far West Area Health Service (FWAHS),
remote New South Wales.
Participants: An enhanced service was provided for res-
idents, specialist mental health and other healthcare
providers.
Results:
• Regular access to psychiatrists for primary and sec-
ondary care was achieved in remote communities in
FWAHS.
• 3908 new patients were seen by CMHTs between July
2002 and December 2003 and 380 by visiting psychi-
atrists between January 2002 and July 2003.
• Secondary consultation, mentoring and education
opportunities were made available by tele-conference
and face-to-face for CMHTs and others in FWAHS.
• GPs and CMHTs in remote settings were satisfied
with improved access to psychiatrist care.
Conclusions: This model appears to be sustainable with
reasonable levels of funding in FWAHS and may be
applicable to other remote contexts.
KEY WORDS: access, integrated service, mental health,
remote, visiting.
Introduction
The 1993 National Health Strategy proposed significant
reform in provision of mental health services. It pro-
posed multidisciplinary service delivery, a single point
of entry for patients, an information system to support
continuity and integration of services, and major
reforms in financing. It found, few financing incentives
for the integration of public and private specialised men-
tal health services to ensure wider access and continuity
of care for people with chronic mental illness.1
The Second National Mental Health Plan 1998 found
widespread failings in integration.2 As part of the imple-
mentation of the plan the Commonwealth Government
sought expressions of interest from Area Mental Health
Services to demonstrate:
• Evidence of broad interest from public and private
sectors in conducting a demonstration project
• A description of current integration mechanisms
• An outline of a broad integration strategy to be
followed
• An agreement between stakeholders to collect rou-
tine patient outcomes.
Three projects were funded with the following aim:
To establish and document approaches to integrating
private psychiatrist and public mental health services.
The purpose is to create a more flexible integrated
framework within which mental health can be
delivered.3,4
These projects were collectively called Mental Health
Integration Projects (MHIP). The Far West Area Health
Service (FWAHS) was selected to receive planning and
then project funds. The live phase commenced in 2000
and the evaluation was published in December 2003.5
This paper reports research conducted in the evaluation
process.
106 D. A. PERKINS ET AL.
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc.
The Third Mental Health Plan 2003 includes the fol-
lowing key principle:6all people in need of mental health
care should have access to timely and effective services,
irrespective of where they live.
Context
The FWAHS occupies one-third of the landmass, but
with about 50 000 people has less than 1% of the
NSW population (Fig. 1). The Australian Bureau of
Statistics has classified the entire area as remote. Thir-
teen per cent of the population are Aboriginal, com-
pared with 1.7% in the State. The area was rated as
having the highest level of socioeconomic disadvantage
in Australia.7
Twelve per cent of the FWAHS population have needs
that are usually treated by public mental health services,
that is, affective disorders, personality disorders, psy-
choses or cognitive impairment. About 20% have needs
usually treated by private mental health practitioners
that is, affective disorders, anxiety disorders and
substance abuse. Only eight Area Health Services in
Australia had a higher prevalence of these disorders
in 2002.7
In 1997 the Australian Medical Workforce Advisory
Committee reported a serious maldistribution of psychi-
atrists with one psychiatrist per 6610 people in capital
cities, one per 20 593 in large rural centres and one per
41 283 in other rural and remote centres.8
In consequence, Far West residents receive a small
proportion of Medicare monies spent on private psychi-
atrist services because there are no resident private psy-
chiatrists in the area. In the early 1990s the FWAHS
mental health service was regarded as a model service
being awarded silver and gold ANZ Mental Health
Service Achievement awards. However, the loss of key
staff in the 1990s had a damaging effect on the quality
of the service.9
There is one resident public psychiatrist based in
Broken Hill serving 50 000 people. There is high staff
What this study adds:
• This study was undertaken to see if a better
mental health services model could improve
access to psychiatrists in remote
communities and support resident health
care providers and GPs.
• This study shows that it is possible to
provide a good-quality mental health service
in remote communities using a primary
health care model where access is improved,
local staff are supported and most patients
are cared for in their communities.
FIGURE 1: Far West Area Health Service.
Pooncarie
Louth
Enngonia
Wanaaring
Tilpa
Towns in the
Far West Area Health Service
White Cliffs Bourke
Brewarrina
Goodooga
Lightning Ridge
Walgett
Collarenebri
Dareton
Euston
Balranald
Coomealla
Ivanhoe
Wentworth
Wilcannia
Menindee
Broken Hill
Tibooburra
What is already known on this subject:
• Psychiatrists have been visiting remote
communities on an ad hoc basis for many
years, often flying in and out on the same
day. Their work has consisted almost
entirely of patient assessment and the
services provided have not been
comprehensive or locally based.
FAR WEST MENTAL HEALTH INTEGRATION PROJECT 107
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc.
turnover among public mental health staff who have
fewer years of experience compared with their urban
counterparts. Two metropolitan psychiatrists have vis-
ited Broken Hill for many years fulfilling a clinical
role.10 A short-term project provided psychiatrists on a
day visit basis to Lightning Ridge and one psychiatrist
occasionally visited Dareton.
Objectives
The project objectives were:
• To provide access to comprehensive mental health
services
• To encourage multi-professional collaboration and
coordination
• To increase the focus on prevention and promotion
• To develop a coherent funding mechanism
• To enable consumer participation
• To provide education and support for mental health
workers and primary health professionals.
The Far West Mental Health
Integration Project
(FW-MHIP) model
The FWAHS Strategic Plan adopted a population health
approach to planning and a primary health care model
of service delivery because the population is scattered
over a large area, resources limited and health problems
increasingly lifestyle-related.11 This model ensures that
mental health services are an integral part of primary
health care and population health (Fig. 2).
Psychiatrists visit on a regular basis from metropol-
itan centres as do allied mental health specialists
from the Broken Hill headquarters. Their visits
include patient consultations and secondary activities
such as caseload review, mentorship and education of
local mental health and primary care staff. Resident
staff continue planned care between visits and are
able to consult by phone if necessary. They receive
regular supervision and support from psychiatrists
FIGURE 2: The Far West Mental Health Integration Project model. CMHT, Community mental health team; FWAHS, Far West
Area Health Service.
Core philosophy Elements of model
era secivres htlaeh latnem yramirp – ygetarts erac yramirP
provided by local generalist staff supported by specialists from
hubs and visiting psychiatrists from metropolitan centres
Hub structure – CMHTs support general health staff and
provide specialist services to patients
Funding mechanism – The Area Health Service was given the
funds it would receive if it had the national average number of
private psychiatrists working across the area and received an
equitable share of State mental health funds.
The local resident mental
health team, general
practitioners (GPs) and
other providers are
supported by specialist
mental health and
counselling staff and
visiting psychiatrists
Management process – Local mental health services are
provided by a CMHT working with GPs, generalist health staff
and others managed by a team leader who reports to the
Director of Mental Health and Counselling.
Visiting Patterns – An increase in the number of visiting
psychiatrists was achieved. Psychiatrists were strongly
encouraged to stay for one or more nights in the communities
they visited.
VMO roles – Specialist psychiatrists were appointed as
Visiting Medical Officers and encouraged to undertake a mix
of primary and secondary activities to meet the needs of the
teams and the communities serviced and to contribute to the
wider service.
Governance mechanism – The project was treated as core
business, covered the whole mental health and counselling
service and was subject to the normal governance mechanisms
of the FWAHS
108 D. A. PERKINS ET AL.
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc.
enhancing staff development and contributing to job
satisfaction.
This model was implemented as the core service
model, with no private referrals to the visiting psychia-
trists who are Visiting Medical Officers. Referrals are
made to the mental health team who refer to visiting
psychiatrists where appropriate. The team leader plans
the visits of psychiatrists and allied specialists to meet
priority needs and is responsible to the Area Director of
Mental Health and Counselling.
Results
Access to psychiatrists
The implementation of FW-MHIP sectors provided
regular access to a psychiatrist for the first time for
patients from outside Broken Hill. Table 1 shows the
number of new patients seen by psychiatrists by sector
from January 2002 to June 2003. The figures in brack-
ets show new referrals as a percentage of all referrals
seen. Low first quarter figures reflect the start-up diffi-
culties and the introduction of psychiatrist activity
reporting processes. New referrals represent about half
of the patients seen. Team leaders reported that it is
usually possible to ensure that those requiring a spe-
cialist consultation see the psychiatrist on his/her next
visit.
Access to community mental health
teams (CMHTs)
Community mental health teams saw a large number of
new clients with a wide range of mental health and other
disorders (Table 2). Many of these individuals were seen
by the visiting psychiatrist and are also recorded in
Table 1.
Table 3 provides a breakdown of individuals by
diagnosis seen between July 2000 and December
2002.
Support activities
Support activities were undertaken by a visiting psychi-
atrist with no patient present and the objective was to
assist local providers including: CMHT members, gen-
eral practitioners (GPs), hospital staff, Aboriginal med-
ical services staff and other agencies. These activities
accounted for 10–20% of specialist activity throughout
the project and included case review, mentorship, sec-
ondary consultation and education for mental health,
acute and primary care staff.
Collaboration
Collaboration with GPs improved but was not a spec-
tacular success for a number of reasons. GPs were in
short supply and reported being overworked with little
time for non-core activities. GP turnover was significant
and relationships with visiting psychiatrists take some
time to build. Many GPs were happy to refer to the
CMHT, and through the team to a psychiatrist, and to
await a letter from the specialist in a traditional manner.
However, GPs reported high quality instances of second-
ary consultation ranging from regular meetings with the
visiting psychiatrist to discuss issues such as treating
patients with personality disorders to one-off but valued
secondary consultations.
Discussion
Increased resources and a new flexibility in their use
enabled improved access to mental health services in a
remote context. These improvements are demonstrated
by the number of patients seen by psychiatrists and
CMHTs and reductions in or elimination of waiting
times.
Local access was critically important for some
Aboriginal and non-Aboriginal patients who typically
refused to travel for specialist care. As a secondary
consideration medical evacuations are an expensive
option for all concerned.
TABLE 1: New referrals seen by visiting psychiatrists by hub
Sector
January–March
2002
April–June
2002
July–September
2002
October–December
2002
January–March
2003
April–June
2003
Total
2002/03
Broken Hill 3 (60) 36 (61) 31 (47) 32 (52) 29 (67) 19 (40) 150
Dareton 6 (35) 5 (20) 6 (28) 6 (25) 6 (26) 10 (41) 39
Lightning Ridge 17 (44) 17 (53) 10 (28) 9 (34) 14 (32) 21 (47) 88
Bourke 11 (55) 18 (56) 13 (52) 23 (58) 17 (60) 21 (51) 103
Total 37 76 60 70 66 71 380
Brackets show new referrals as percentage of all patients seen by visiting psychiatrist. Based on manual reporting by psychiatrists
which explains why data are only available for six quarters.
FAR WEST MENTAL HEALTH INTEGRATION PROJECT 109
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc.
The key to the model is the balance of primary and
secondary activities. Specialist visits worked best where
they were carefully planned in advance by the resident
team leader and were part of a strategy to address key
community needs and to build the skills and experience
of resident staff.
The best evidence of the value of secondary activity
was the strong relationship between visiting psychia-
trists and CMHTs. This was built through mentorship,
caseload review, educational activities and joint consul-
tation. This broad ranging role was possible because of
flexibilities in the FW-MHIP model. Visiting psychia-
trists acted as general psychiatrists not specialists in a
particular condition but were able to contribute their
specialist expertise through monthly tele-education ses-
sions broadcast to the four hubs and attended by
CMHT members, acute and primary health services
staff.
Community mental health team members reported
that opportunities for mentorship, education and sup-
port are important factors in recruitment and particu-
larly retention of staff in the early years of their career
particularly in the light of the professional and social
isolation experienced in remote towns.
The sustainability of this model depends on each
element working within a broadly agreed set of goals
and values. The practice of visiting rural or remote
locations is not uncommon. The key is what happens
before, during and after the visit and the way in
which a series of visits contributes to the local service.
The motivation of visiting psychiatrists needs to be
monitored recognising factors that improve their expe-
rience and addressing administrative and organisa-
tional problems that might detract from their
experience.
This model could not have developed and is not sus-
tainable under normal Medical Benefits Schedule fee-
for-service arrangements. Its success depends on both
the quantity of funds and flexibility in their use.
Conclusion
This model focuses on the needs of local populations
and providers; hence the role of local management and
the team leaders is particularly important. FW-MHIP
was designed to be scaled and adjusted to fit the needs
of different populations such as Broken Hill and
Bourke. In each sector the CMHT leader is the local
manager and plays a similar role despite differences in
team size and composition.
Although outcome data are scarce, information on
activity is critical to assess access improvements, quan-
tify support activities and see how the model is working.
Project governance was informed by findings from pre-
vious programs such as the coordinated care trials.10T
A
B
L
E
2
:
N
ew
r
ef
er
ra
ls
s
ee
n
b
y
C
M
H
T
s
b
y
h
u
b
Se
ct
o
r
Ju
ly
–D
ec
em
b
er
2
0
0
0
Ja
n
u
ar
y–
Ju
n
e
2
0
0
1
Ju
ly
–D
ec
em
b
er
2
0
0
1
Ja
n
u
ar
y–
Ju
n
e
2
0
0
2
Ju
ly
–D
ec
em
b
er
2
0
0
2
Ja
n
u
ar
y–
Ju
n
e
2
0
0
3
Ju
ly
–D
ec
em
b
er
2
0
0
3
T
o
ta
l
B
ro
k
en
H
il
l
3
4
8
2
4
8
2
9
0
3
1
2
1
9
2
1
6
1
1
4
0
1
6
9
1
D
ar
et
o
n
1
4
3
9
7
8
1
6
2
7
2
7
9
6
4
5
9
8
L
ig
h
tn
in
g
R
id
ge
8
9
6
4
7
3
1
1
6
1
1
0
1
2
3
9
5
6
7
0
B
o
u
rk
e
1
7
2
1
9
3
1
3
3
1
6
0
9
6
8
9
1
0
6
9
4
9
T
o
ta
l
7
5
2
6
0
2
5
7
7
6
5
0
4
7
0
4
5
2
4
0
5
3
9
0
8
C
M
H
T
,
co
m
m
u
n
it
y
m
en
ta
l
h
ea
lt
h
t
ea
m
.
110 D. A. PERKINS ET AL.
© 2006 The Authors
Journal Compilation © 2006 National Rural Health Alliance Inc.
The project was managed as part of core business and
therefore the FW-MHIP model became the service
model, not a pilot or project.
It has achieved improvements in access for residents
of remote communities at low cost.
It has proved attractive to each of the provider groups
and has won support from related health and other
services.
Finally, the model requires a significant investment in
planning, design and implementation. This would be
critical in any attempt to replicate it in other remote or
rural contexts.
Acknowledgements
The authors would like to acknowledge the contribution
of the consumers, staff, management, GPs and visitors
to the Far West who have generously found time to
answer questions, collect data, complete questionnaires
and contribute to the research reported here. The project
was funded by the Mental Health Branch of the Austra-
lian Government and by New South Wales Health.
References
1 Commonwealth Department of Health and Family Ser-
vices. Help Where Help is Needed: Continuity of Care for
People with Chronic Mental Illness. Canberra: National
Health Issues Strategy, 1993. Paper no. 5.
2 Australian Health Ministers’ Conference. National Men-
tal Health Policy. Canberra: Australian Government Pub-
lishing Service, 1992.
3 Eagar K, Owen A, Perkins D et al. Planning Guidelines
for the National Demonstration Projects in Integrated
Mental Health Care. Canberra: Commonwealth of
Australia, 1999. Discussion Papers 1–6.
4 Perkins DA. Towards integrated mental health services in
rural and remote Australia in Leaping the boundary fence:
using evidence and collaboration to build healthier rural
communities. Proceedings of the 5th National Rural
Health Conference, pp. 486–492, 14–17 March 1999,
Adelaide, SA, Australia.
5 Perkins DA, Lyle D. Far West Mental Health Integration
Project Evaluation Report. Canberra: Australian Govern-
ment Department of Health and Ageing, 2003.
6 Australian Health Ministers. National Mental Health
Plan, 2003–2008. Canberra: Australian Government,
2003.
7 Burgess P. et al. Mental Health Needs and Expenditure
in Australia. Canberra: Mental Health and Special Pro-
grams Branch, Commonwealth Department of Health
and Ageing, 2002.
8 Australian Medical Workforce Advisory Committee. The
Specialist Psychiatry Workforce in Australia. AMWAC
Report 1999.7, Sydney.
9 Rosen A, Hemming M. Rural and remote mental health
services: what the city can learn from the Bush, keynote
address. Proceedings of the Rural Mental Health Confer-
ence, 1997, Broken Hill, Australia.
10 Owen C, Tennant C, Jessie D, Jones M, Rutherford V. A
model for clinical and educational psychiatric service
delivery in remote communities. Australian and New
Zealand Journal of Psychiatry 1999; 33: 372–378.
11 Far West Area Health Service. Strategic Plan. Broken Hill:
Far West Area Health Service, 1998.
12 Perkins DA, Owen A. Lessons in governance from care
net Illawarra. The Australian Co-ordinated Care Trials:
Reflections and Lessons. Canberra: Commonwealth
Department of Health and Aged Care, 2001; 105–113.
TABLE 3: New referrals seen by CMHTs by diagnosis and hub July 2000–December 2002
Broken Hill Dareton Lightning Ridge Bourke Total
Not yet allocated 209 47 30 405 691
Mood disorder 317 115 51 93 576
Depression and anxiety 60 40 47 19 166
Anxiety disorder 52 54 108 25 239
Psychotic disorder 132 25 43 29 229
Alcohol/drugs 119 22 48 36 225
Other 311 130 116 61 618
Mental health diagnosis not applicable 190 22 9 86 307
Total 1390 455 452 754 3051
CMHT, community mental health team.
Multiple health
problems in
elderly people
page 950
Excessive
drinking in
young women
page 952
Adverse drug
reactions in
elderly people
page 956
Palliative care
beyond cancer
page 958
Drug resistant
infections in
poor countries
page 948
Management
of chronic pain
page 954
M
A
K
IN
G
A
D
IF
FE
R
E
N
C
E
945BMJ | 26 APRIL 2008 | VOLUME 336
BMJ | Making a difference | 26 april 2008 | VoluMe 336 947
Running the gauntlet to improve
patient care
This supplement is the result of a gauntlet
thrown down, and picked up, during a dinner
in London just over a year ago. The gauntlet
thrower was Don Berwick, president of the
Institute for Healthcare Improvement in Boston.
What, he asked, was the BMJ Publishing Group
really for? What were we trying to achieve? In
reply, I and our chief executive, Stella Dutton,
were quick to quote the BMJ’s mission, which
ends with the crucial words “to improve
outcomes for patients.” Fine, said Don, but how
about being more specific: which outcomes,
what patients, by how much?
We took his suggestion seriously. Why not
target a few important healthcare problems,
taking a quality improvement approach
and focusing on the evidence on how to
make a difference in these areas? But how
to choose which issues to tackle among
the many millions of pressing healthcare
challenges facing the world? We turned in the
first instance to BMJ readers. In May 2007
we asked you to tell us what information was
most needed to improve the quality of care of
patients in clinical practice. From your many
rapid responses we harvested more than 200
ideas. After categorising these and matching
them against the priorities of national and
international bodies, we created a shortlist
of 12. With the help of an expert panel (see
http://makingadifference.bmj.com) we cut
these down to six.
Inevitably the choice of topics is subjective
rather than scientific, but the six we have
ended up with are interesting. Several turn the
spotlight on areas that are less than glamorous
and are perhaps all too often passed over, even
as their impact on individual lives and society
increases. Two topics deal with problems of
old age: multiple illness and adverse drug
reactions. Two deal with palliation: of chronic
pain and in dying from non-malignant disease.
The remaining topics deal with two very
different but serious and growing public health
challenges: drug resistant infections in the
developing world and excessive drinking in
young women. You will no doubt find important
gaps in what we have chosen. But if this
initiative proves useful we can expand it further.
On each of the six topics we’ve invited
leading commentators to write the pairs
of articles that make up this supplement.
One article in each pair aims to describe
the importance of the problem in terms of
its health and societal impact. The other
looks at the available evidence on quality
improvement initiatives to tackle the problem.
Perhaps inevitably, several of the quality
improvement articles conclude that the
evidence is inadequate and more research is
needed, but the authors do lay out what they
think are the priorities for future research.
One key priority is to develop new and better
research methodologies for evaluating quality
improvement initiatives.
We need to choose one or two of these topics
to focus on over the next year, on which we will
create and compile content across the BMJ
Group’s portfolio of products: the BMJ, BMJ
Journals, Clinical Evidence, Best Treatments,
and BMJ Learning. How will we know whether
we have made a difference? We probably won’t
in any scientific sense. But we
will be looking for ways to
evaluate the effect of the
initiative. On this, as
well as on the topics
themselves, we would
welcome your thoughts.
Fiona Godlee, editor, BMJ
fgodlee@bmj.com
For 20 years the National Confidential Enquiry into Patient Outcome and Death (NCEPOD) has been
committed to improving the quality of care received by patients in hospital. NCEPOD does this by
undertaking confidential surveys, publishing reports that highlight remediable factors in the care of
patients. NCEPOD’s remit extends across surgery and medicine and it is the valued contribution of all
the clinicians and hospitals involved that ensures the quality of the reports produced.
For more information visit www.ncepod.org.uk or call us on 0207 631 3444.
Registered charity: 1075588 Company Limited by Guarantee: 03019382
Improving the
quality of medical
and surgical care
ADVERTISEMENT
in any scientific sense. But we
will be looking for ways to
BMJ
m a k i n g a d i f f e r e n c e
several topics turn the
spotlight on areas that
are less than glamorous
and are perhaps all
too often passed over,
even as their impact
on individual lives and
society increases
948 BMJ | Making a difference | 26 april 2008 | VoluMe 336
A shrinking window of opportunity
Around the world an estimated 10 million children
under the age of 5 years die each year, the vast
majority (90%) in a mere 42 countries. Of the
major causes of death among children, infections
such as newborn sepsis, diarrhoeal disorders,
pneumonia, meningitis, and malaria are major
killers. While much is known about the role that
poor availability of interventions has in childhood
morbidity and mortality in developing countries,
much less is known about the contribution of
antimicrobial resistance—but it is likely that the
contribution of resistant infections is significant. In
a prospective study of 1828 children with signs of
systemic infections in Tanzania, the mortality from
Gram negative bloodstream infection (44% of the
deaths) was more than double that from malaria
(20%) and Gram positive bloodstream infections
(17%), and antimicrobial resistance was found to
be a significant risk factor for mortality. A literature
review has underscored the importance of hospital
acquired resistant bacterial infections among
newborn infants in developing countries.
The emergence of antimicrobial resistance
is recognised as a major contributor to excess
morbidity and healthcare costs in developed
countries. In poorer countries, limited laboratory
facilities and the lack of robust, population based
surveillance systems has meant that information
on the effect of antimicrobial resistance on health
outcomes is restricted to a small number of
infections. Emerging drug resistance in malaria,
recognised for many years, has now resulted
in many traditional drugs such as chloroquine
becoming completely ineffective. An evaluation
of trends in malaria treatment in sub-Saharan
Africa has shown that continuing use of ineffective
chloroquine treatment has contributed to excess
malaria mortality. The case fatality rate for malaria
fell as an increasing proportion of children received
an effective treatment regimen: adjusted malaria
case fatality rates were 5.1% in 1992 and 3.3%
in 1994, and the corresponding percentages of
children who received effective therapy were 85%
in 1992 and 97% in 1993-4.
The increasing resistance of Streptococcus
pneumoniae and Haemophilus influenzae to
drugs has an effect on pneumonia mortality
that is less well recognised, largely because of
the difficulty in isolating the organisms from
the bloodstream. In a prospective study of
children in 5000 Bangladeshi urban households
who had invasive pneumococcal disease, the
Certain principles of effective quality improve-
ment interventions are universal. Relevant
stakeholders must believe that it is worth while
to remedy the deficiency in quality, that the
benefits of change outweigh the costs, and that
change is possible. The threat of antibiotic resist-
ance and its coevolution with particular patterns
of antibiotic use are also universal.
Unfortunately, the public health agendas of
few countries have prioritised the problem of
antibiotic resistance. This is especially true in
less developed countries, where antibiotics are
often overused and misused by formal and
informal healthcare providers and by patients,
who are often able to obtain antibiotics without
a prescription. Few policy makers, few mem-
bers of the general public, and unfortunately
too few medical schools and health profession-
als recognise the urgency and implications of
the problem. Instead, pharmaceutical policies
often focus on scaling up and ensuring access
to drugs, including broad spectrum antibiotics,
without considering rational use.
What will really help to create change and fos-
ter effective quality interventions to tackle resist-
ant infections in developing countries? Strategies
in such countries require changes at the levels of
policy, the institution (including healthcare pro-
viders), and the individual. Quality improve-
ment strategies to improve the behaviour of
providers and patients do exist in developing
countries, but their success depends on govern-
ment and stakeholder support.
To increase government and stakeholder
involvement and accountability, it is impor-
tant to establish national programmes that
publically report rates of antibiotic use and
resistance. Although the World Health Organi-
zation (WHO), the Pan American Health
Organization, and others have promulgated
useful recommendations for hospitals and
communities around the world to combat anti-
microbial resistance, few developing countries
have been able to implement these recom-
mendations fully. When resources are limited,
assuring access to drugs tends to overshadow
the quality of their utilisation. The interna-
tional community should partner with devel-
oping countries to perform the initial cycles
of measurement and to design systems to link
the data with information to the public on the
effect of the problem on population health,
personal health, and the economy. Such meas-
urement should occur across several countries
in close proximity to harness “peer pressure”
and foster better practices.
m a k i n g a d i f f e r e n c e
drug resistant
infections in
poor countries
Resistance to drugs in many
common childhood infections
is a growing problem in the
developing world, says Zulfiqar
Bhutta. Effective programmes
to combat resistance are within
reach in developing countries,
argue ralph gonzales and
colleagues, but we must move
swiftly
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
A major burden on children
BMJ | Making a difference | 26 april 2008 | VoluMe 336 949
Performance measurement and account-
ability are potent inducers of behavioural and
systemic change in organisations. For example,
accreditation agencies and funders now require
hospitals in the United States to publically
report performance and outcome measures, a
policy that has triggered an explosion of quality
improvement activity in US hospitals. An excel-
lent template for the annual measurement and
comparison between countries of consumption
of antimicrobials and resistance rates has been
developed by the GRACE project in Europe
(www.grace-lrti.org/portal/en-GB). Similar uti-
lisation and resistance profiles for developing
countries are needed, and efforts are under way
to accomplish this in Latin America through a
partnership between research institutions, gov-
ernment agencies, and WHO.
Many lessons from quality improvement
interventions in health care in wealthier coun-
tries can be applied elsewhere. Various frame-
works and theories have been found useful for
diagnosing contextual factors and developing
strategies to change specific policies, organisa-
tional practices, and the behaviour of provid-
ers and individual consumers. For example,
education and decision support, when part of
a comprehensive effort, have been useful in
HIV prevention, tuberculosis management,
and tobacco control, as well as in appropriate
antibiotic use. The literature also shows that
quality improvement initiatives that lack local
champions and stakeholder support will face
formidable challenges to success.
Strategies that work in one place must be
assessed for their applicability to other settings,
and programmes must be tailored to countries’
unique circumstances. Formative research into
social factors and practices in specific regional
and local contexts, such as how the public and
professionals make decisions to recommend,
procure, and use antibiotics, is indispensable
to achieve change. For example, we found
that most patients (62%) purchasing antibiot-
ics in Mexican pharmacies without a prescrip-
tion reported acting on the recommendation
of a clinician. Thus, in Mexico, education
campaigns to reduce unnecessary antibiotic
use must target doctors as well as the public.
Nevertheless, educating the public is crucial,
as patients often misuse antibiotics regardless
of whether they were bought over the counter
or were prescribed.
In developing countries, access to antibiotics
without a prescription is commonplace. Here
the priority should be to change regulatory
policies related to antibiotic procurement and
to enforce these policies. This includes creat-
ing an infrastructure for surveillance, commu-
nication, and effective sanctions. For example,
in Chile a mass media campaign preceded
enforcement of regulatory measures making
antibiotics available by prescription only,
resulting in a 35% decrease in antibiotic con-
sumption. It may be useful to emphasise the
repercussions that are unique to antibiotic use:
in contrast to other drugs the consequences of
an individual using antibiotics extend to that
person’s family and community. Finally, we
need to use data and the media to challenge
the perception that providing access to antibi-
otics without a prescription somehow helps to
compensate for the lower access to doctors in
poorer countries.
The window of opportunity for combating
antibiotic resistance continues to shrink. Much
work remains to be done in most countries, but
particularly in developing countries. We believe
that effective programmes to tackle resistant
infections are tenable and within reach of the
constrained resources of developing countries.
The major barriers are the political and public
will to set up the systems that can bring about
change. Partnerships among national and inter-
national stakeholders will help.
ralph gonzales professor of medicine (epidemiology and
biostatistics), Clinical and Translational Sciences Institute KL2
Multidisciplinary Career Development Program, University of
California, San Francisco ralphg@medicine.ucsf.edu
kitty k corbett professor, Faculty of Health Sciences, Simon
Fraser University, Burnaby, British Columbia
Veronika Wirtz lecturer, anahi dreser researcher, Center of
Health Systems Research, Instituto Nacional de Salud Publica,
Morelos, Mexico
incidence of the disease was 447 episodes per
100 000 child years, and the rates of resistance to
penicillin, co-trimoxazole, chloramphenicol, and
ciprofloxacin were, respectively, 3%, 82%, 15%,
and 24%.
Such evidence of the failure of co-trimoxazole
has led to the recommendation to use amoxicillin
to treat pneumonia in primary care settings, but
as yet few health systems in the poorest countries
have the extra funds needed to implement these
recommendations widely. This is akin to the need
for combination therapy for effective malaria
treatment and to second line treatment for drug
resistant tuberculosis in children, both looming
realities in public health systems in sub-Saharan
Africa. In South and South East Asia a major burden
of childhood bacteraemic infections is related
to typhoid fever, as well as the infections listed
above. Over the last two decades the prevalence of
multidrug resistant typhoid has steadily increased
in Asia, and with the widespread use of generic
ciprofloxacin and cephalosporins resistance
to these second line antibiotics has steadily
grown. Increasing antimicrobial resistance
results in a much higher economic burden on
the health systems of poor countries, because of
the higher likelihood of treatment failure and of
complications associated with such infections.
Several factors are associated with the rise of
resistance to common infections in developing
countries, including the global spread of drug
resistant clones as travel becomes easier
and local antimicrobial pressure on common
organisms. This second factor may be related
to inappropriate prescribing of antibiotics, the
unregulated availability over the counter of
these drugs, and (for reasons of affordability)
inappropriate dosages and duration of
treatment.
Increasing public awareness, improving
standards of care, and the appropriate regulation
of the use of such antimicrobials are all important
steps. A recent evaluation of the effect of the
Swedish national programme for the surveillance
of antibiotic use and resistance and the
implementation of rational antibiotic use showed
that antibiotic use among outpatients fell from
15.7 defined daily doses per 1000 people in 1995
to 12.6 per 1000 in 2004. The largest reduction (by
52%) was noted in children, with no measurable
negative consequences on admission rates for
common upper respiratory infections. However,
examples of successful application of such
interventions in developing countries are few.
What are the main challenges with regard to
antimicrobial resistance in common childhood
infections in developing countries? We need better
information systems defining the magnitude
of the problem and training programmes to
optimise treatment with antibiotics. As we need to
balance antibiotic “access” as well as “excess,”
measures to regulate antibiotic availability must be
accompanied by strengthening workforce capacity
and drug supplies in dysfunctional health systems.
The crisis of increasing antimicrobial resistance
to serious and common childhood bacterial
infections is a reality in developing countries, and
solutions are urgently needed.
Zulfiqar a Bhutta professor and chairman, Department of
Paediatrics and Child Health,The Aga Khan University, Karachi
zulfiqar.bhutta@aku.edu
antimicrobial resistance
results in a much higher
economic burden on the health
systems of poor countries
drug resistant infections in poor countries
Never had it so good?
950 BMJ | Making a difference | 26 april 2008 | VoluMe 336
Adapting what is known
What does it mean to be old? What is the
relation between ageing and illness? How
does the subjective experience of multiple and
compounding illnesses relate to the medical
model and the taxonomy of disease? These
questions become more pressing as an ever
greater proportion of the population survives
into extreme old age, and as the postwar baby
boomers—those who “never had it so good,”
as Harold Macmillan put it—begin to draw
their pensions.
Globally the proportion of people aged ≥60
years is growing very fast. It is expected that by
2025 a total of about 1.2 billion people will be
in this age group. By 2050 this number will have
risen to two billion, 80% of them in developing
countries. The older population itself is also
ageing. Currently 69 million people are aged over
80, and although this age group now accounts
for only 1% of the world’s population (and 3%
in developed countries), it is the fastest growing
segment of the population.
The World Health Organization and many
national governments are promoting the concept
of “active ageing,” which portrays ageing as a
positive experience and promotes continuing
participation in social, economic, cultural,
and civic activities. The concept is based on
rights rather than on need and seeks to move
away from a view of elderly people as frail and
dependent. All this is to be applauded, but it may
conceal a worrying reluctance to acknowledge
the inevitable reality of death and dying. All
bodies must die and find ways of doing so.
Age is a fundamental cause of disease,
working through a multiplicity of causal
pathways to generate multiple risk factors and
multiple disease outcomes. All clinicians are
familiar with this process, by which treating one
disease in a frail, older person often means that
symptoms reappear through another pathway.
As the treatment of disease slowly becomes
more effective, an ever greater proportion of the
population survives with multiple compounding
chronic diseases. The commonest of these
are cardiovascular disease, stroke, diabetes,
cancer, chronic obstructive pulmonary disease,
musculoskeletal conditions, and mental illness
(including dementia), occurring in many different
combinations. The orthodox medical view is
that these are distinct and definable conditions
each of which carries a different prognosis and
Multiple health problems are not unique to
older persons; they are, however, more preva-
lent in this group. Furthermore, as a person
ages, what was once a reasonable choice in
treatment may be less appropriate, even
harmful. In making clinical decisions about
the health of older patients and in quality
improvement for managing care, what are the
trade-offs between benefit and risk? What are
the opportunities for, and the barriers against,
putting such knowledge into practice?
A 78 year old woman with complex
health problems visits her doctor. Although
in younger patients clinical recommenda-
tions may include screening mammography
or intensive control of diabetes, this woman
may not actually live long enough to benefit
from these interventions. The issues that are
most important to her may bear little rela-
tion to the bioclinical problems her doctor
has been trained to diagnose and treat. Col-
laborative decision making by clinicians and
older patients such as this woman is almost
always made in a grey zone of unavailable
evidence and divergent expectations. Yet
tools are becoming available to help weigh
the trade-offs between treatment benefits and
competing risks. As these tools become more
sophisticated and easier to use in the everyday
clinical setting, they will help in clarifying the
choices that must be made by older patients
with multiple health problems.
The environment in which care is offered
and decisions made—the system of “usual
care”—is often bad for health. Its toxicity may
be a consequence of too many health workers
providing fragmented care, too many drugs
having adverse side effects, or too much inten-
sive treatment leading to dangerous compli-
cations. And usual care suffers by being fast
paced, reimbursed according to volume, and
focused too much on what the matter is with
the patient, rather than what matters to the
patient. Many alternatives to this usual care
are better, but most of these add additional
workforce—nurses, case managers, “coaches,”
and “teams”—in bewildering combinations
called disease management, case management,
transition management, and geriatric evaluation
and management. Other effective alternatives
to usual care, such as routine telephone calls
to the patient from an identified primary care
clinician, need no additional workforce.
That there are so many things wrong with
the usual care and so many ways to improve
it raises an obvious question: why hasn’t qual-
m a k i n g a d i f f e r e n c e
Multiple health
problems in
elderly people
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
With ever increasing pressure
on doctors’ time, iona Heath
wonders whether primary care
really meets the needs of elderly
people at all, while John Wasson
suggests ways for doctors to
improve the care of older patients
that don’t require extra resources
or staffing
BMJ | Making a difference | 26 april 2008 | VoluMe 336 951
requires different treatment. However, people
who live with multiple diseases, physical and
mental, experience them simultaneously and
inseparably. The patient with diabetes and
depression and congestive cardiac failure
does not have these conditions in separate
compartments of her life. She has all three
inseparably and, if she is also lonely and
frightened, all of this is a single condition.
The problem is that in health care the
specialist medical view predominates. And, as
a direct result, multiple diagnoses lead almost
inevitably to polypharmacy as each condition
is treated in perverse isolation from the others.
Research findings are extrapolated from younger
age groups and interpreted overoptimistically
in the context of what inevitably are limited life
expectancies. As a direct result, older people are
taking an ever increasing number of prescribed
drugs, but because of diminished physiological
reserve they are also more susceptible to adverse
drug reactions and interactions. Nevertheless,
the all too easy accusation of age discrimination
means that the limited time available for older
people to derive clinical benefit is not seen as
a legitimate reason for “underprescribing.”
Systems of “quality improvement” that involve
payment for performance, such as the UK
Quality and Outcomes Framework (QOF),
apply standards with no allowance for age
and systematically encourage overtreatment
of hypertension and type 2 diabetes, to
the detriment of patients. Many preventive
treatments in old age may simply change the
cause of death and not its date. The energetic
treatment of cardiovascular risk factors is
effective in reducing cardiovascular mortality but
does not prolong life and increases the likelihood
of a diagnosis of cancer or dementia.
Old people themselves have different
priorities and can find the epidemiological
perspectives of healthcare professionals to be
intrusive and inappropriate. Most elderly people
are very aware of death and know that it must
be faced and negotiated: “The big event of old
age—the thing which replaces love and creativity
as a source of drama—is death” (the author
Diana Athill).
Many frail older people have a rapidly
diminishing appetite for technological health
care and a proportionately increased need for
sensitive, gentle, hands-on physical care: a
need that is easily compromised by the very real
fear of becoming a burden. At present, medicine
seems to have limited means of marking
this transition, but such means are urgently
needed, because the continuing emphasis on
individual diseases leads, usually inadvertently,
to undertreatment, overtreatment, or
mistreatment—and often all three.
Tragically, the global trends of
commodification, privatisation, and
fragmentation in health care mean that the
dimensions of care most needed by frail elderly
people become less and less accessible. Yet
multiple illnesses can be coherently managed
only by a personal generalist physician who
is able to provide continuity of care for the
patient’s whole experience of illness, while at the
same time remaining alert to those diagnostic
possibilities that are readily remediable. But how,
within a market system, can unprofitable need
for time intensive and hands-on personal care
from a known other ever be given commensurate
priority?
iona Heath general practitioner
Caversham Group Practice, Kentish Town, London
iona.heath@dsl.pipex.com
ity improvement already resulted in better
usual care for older persons with multiple
health problems?
One reason commonly given for the per-
sistence of poor care is that most studies of
successful interventions for elderly patients,
when compared with usual care, have not
provided clear evidence of cost savings.
However, saving costs seems a poor reason
for not improving care, and indeed many of
the attributes of good quality care may not
require extra staff or money. In fact, within
the range of usual care about a fifth of older
patients with multiple health problems are
already receiving the high levels of access,
continuity, communication, and self man-
agement that are associated with successful
alternatives.
The fact that these crucial attributes of qual-
ity care are already available to some patients
raises a second question: can this high qual-
ity care be generalised to more patients?
An affirmative answer to this question is
provided by one innovative US example
of a quality improvement project: an online
collaboration involving a group of primary
care practices across the country (www.ideal-
medicalpractices.org). In these practices, the
percentage of older patients with complex
health problems who are attaining attributes
of high quality care as listed on the website
is more than twice that in non-participating
practices, even though they receive no spe-
cial reimbursement.
The thrust of future research into quality
improvement for older patients with multiple
health conditions should be directed towards
two objectives. The first is research into
how to adapt and adopt what is known. The
existing literature on quality improvement
demonstrates numerous ways to improve
health care for these patients through
timely assessment of “what matters,” easy
access to care, continuity of care with an
identifiable clinician, and understandable,
relevant information and support for con-
dition management and collaborative deci-
sion making. Although no particular setting,
patient population, or disease mix will be
identical to those reported in the published
literature, many essential elements are con-
stant. For example, it is not surprising to cli-
nicians that their patients’ confidence in self
management, financial status, and manag-
ing pain and psychosocial problems affects
their healthcare outcomes. What is surpris-
ing is that clinicians don’t systematically
evaluate these factors when assessing older
patients and placing them into categories for
the delivery of planned care. Technologies
and methods are already freely available to
help busy health professionals capture these
valuable opportunities.
The second area is research into how to
overcome the most conspicuous barrier to
the improvement of care: the current health-
care culture. The current culture induces dys-
functional workforce expectations, unwanted
variation in practice patterns, ineffective
training venues, counterproductive payment
incentives that are often based on inappro-
priate measures, and excessive technological
imperatives. Only in a very few clinical prac-
tices are measures of “what matters” to the
patient really at the centre of care. At a mini-
mum, the prevailing culture has to change
to enable breathing room from oppressive
volumes of consultations and paperwork so
that the few motivated health professionals
implementing patient centred, collaborative
care can become the many.
John H Wasson professor of geriatrics
Dartmouth Medical School, Lebanon, New Hampshire
John.H.Wasson@dartmouth.edu
the prevailing culture has
to change to enable breathing
room from oppressive
volumes of consultations
and paperwork
Never had it so good?
Multiple HealtH proBle Ms in elderly people
Adapting what is known
952 BMJ | Making a difference | 26 april 2008 | VoluMe 336
medical milestones
Reducing harm through quality
improvement
Are we now seeing the undesirable
consequences, for instance in drinking and
smoking habits, of female emancipation? As
women quite rightly seek greater opportunities
for equality in the workplace and in other
aspects of life, we see signs of them falling prey
more and more to so called lifestyle diseases.
Young women are all too commonly seen
huddling outside enjoying a cigarette; and while
lung cancer rates fall overall, they continue to
rise in women.
Women are also conspicuously heading for
equality in their drinking habits. In the most
recent British general household survey, 42% of
men and 39% of women aged 16 to 24 years had
exceeded safe recommended daily limits in the
previous week, with over half of those drinking
heavily or “bingeing.” The United Kingdom has
the heaviest drinking young women in Europe,
nearly 40% of whom admit to having drunk six or
more units in one session in the previous week.
Does it matter that our young women are
having fun? Most get away without harm and
will probably settle down. But those who do
not escape harm may have their life changed
fundamentally under the influence of alcohol.
Most first consensual sexual experiences and
unwanted pregnancies occur in this way, and
the distinction between rape and sex regretted
the next day can become blurred when women
are drunk. Genitourinary clinics see drink as the
biggest factor in unprotected sex and sexually
acquired infections. Some young women will
be scarred for life through drunken brawls and
arguments. In Scotland about 30% of women
committing violent crime are drunk.
Of course, the victims of accidents need not
be drunk themselves: alcohol is responsible
for much third party or collateral damage. In
England and Wales, over half of victims of
violence perpetrated by a stranger judged
the attacker to be under the influence of
alcohol. This is particularly an issue in
domestic violence, where again at least half of
perpetrators are likely to have been drinking.
It is remarkable how damage to the health of
third parties was such a tipping point for public
opinion on the issue of smoking in public
places, yet alcohol is hugely more serious in
this regard.
Teenage girls and young women are unlikely to
be receptive to arguments about serious organ
The concept of harm reduction has evolved
over nearly 90 years from its beginnings in the
1920s, when it applied to drug misuse in adult
populations. Applying the concept to adoles-
cent groups at risk is relatively new, requiring
that the concept be adapted appropriately.
Adolescent harm reduction spans a wider
array of harmful behaviours than are discussed in
the literature: substance misuse, multiple sexual
partners, violence and weapon carrying, non-use
of helmets when cycling, skating, or snowboard-
ing, riding with a driver who has been drinking,
and suicide plans. But the main contributor to
death from injuries in people in the United States
under the age of 21 is underage drinking.
Young women are “outdrinking” their male
counterparts of the same age and are more likely
to experience adverse health consequences. Such
behaviour may undermine neurological brain
development, predispose to adult dependency,
and increase mortality. The strong association
between drinking and having multiple sexual
partners “underscores the need to educate young
people about the effects of alcohol on partner
choice and the risk of infection with sexually
transmitted diseases,” as one study put it.
Harm from drinking often involves oth-
ers; among young women this other will often
be an unborn child. Fetal alcohol syndrome
is the leading cause of brain damage in chil-
dren in the United States. Young girls are now
drinking and smoking like boys and are more
likely to be depressed and to attempt suicide.
In primary care the complexity of these risky
behaviours among young people often goes
undetected, owing to lack of time, of access
to effective treatment, and of coordinated and
adequately funded resources in the commu-
nity to reduce harm.
A growing number of patients with serious
mental illness and substance misuse report
being treated in primary care or emergency
rooms. Despite the availability of evidence
based treatment for these disorders, many
patients and families do not receive effective
treatment in real world settings. One strategy
to help remove such barriers is to re-engineer
the processes of care delivery, using an evi-
dence base of changes that lead to improve-
ments in the quality and efficiency of care.
Our organisation, the non-profit Intermoun-
tain Healthcare (http://intermountainhealth-
m a k i n g a d i f f e r e n c e
Not just a “lifestyle disease”
excessive
drinking in
young women
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
The growing problem of binge
drinking among young women is
one that must be dealt with at a
societal level, says ian gilmore.
Nevertheless, doctors can make
a difference at an individual level,
and Brenda reiss-Brennan
and colleagues describe one US
quality improvement intervention
in primary care
BMJ | Making a difference | 26 april 2008 | VoluMe 336 953
damage in years to come, and so it is important
to highlight dangers that are more immediately
relevant to them. It is now apparent that fetal
alcohol syndrome, where babies are born with
severe brain damage and a typical physical
appearance, is but one end of a spectrum (fetal
alcohol spectrum disorders); and less obvious
behavioural disorders such as attention deficit
hyperactivity disorder may result from exposure
to alcohol in the womb. Unfortunately exposure
in early pregnancy is likely to be important, and
so far no safe threshold has been identified. Thus
the only safe advice is for women to avoid alcohol
if they seek to become pregnant—tough advice
where every celebration now seems to have
alcohol at its core.
Alcohol misuse remains the most important
cause of death from chronic liver disease
(cirrhosis), the prevalence of which has grown
startlingly in women, particularly in the 35-44
year age group (sevenfold in the last three
decades) but also in even younger women.
This reflects the early age when heavy drinking
starts. Particularly striking is the emergence
of the syndrome of alcoholic hepatitis
(not always associated with histological
cirrhosis), where the patient is febrile, deeply
jaundiced, and often has ascites and other
features of decompensation of liver function.
Histologically this can be indistinguishable
from non-alcoholic fatty liver disease, and it
has been suggested that alcoholic hepatitis
may be a “double hit” of alcohol on top of
a fatty liver, often associated with obesity,
which would explain the rapid increase in the
disease. Certainly the burden of harm is seen
disproportionately in the most disadvantaged
in society, a striking example of health
inequality that remains unexplained.
What can be done to turn this tide of alcohol
related health harm in young women? We
know that telling them to behave better will
not work. England’s national alcohol harm
reduction strategy of 2004 relied heavily on
voluntary partnerships with producers and
retailers of drink, linked to public education
and information. Sadly, these initiatives have
palpably failed. This should not surprise
us too much, because the best predictor of
alcohol related health damage is per capita
consumption, and it can hardly be in the
industry’s interests to have falling sales. Hence
we need to fall back on the tools that have an
international evidence base: mainly price and
availability. Alcoholic beverages have never
been as cheap in real terms as they currently
are—particularly those sold in off-licences and
supermarkets—nor as available.
Although approaches to increase price and
reduce availability smack of the “nanny state,”
it is simplistic to dismiss alcohol dependence
and physical damage as lifestyle diseases,
somehow down to the individual’s free choice
and nothing to do with the state. Cheap drink is
available and heavily promoted. Alcohol is our
favourite drug, and it is distressing to see young
women pressured into misusing it.
ian t gilmore president
Royal College of Physicians of London
ian.gilmore@rcplondon.ac.uk
care.org/xp/public/about-intermountain/),
became increasingly concerned that primary
care resources were not being used effectively
to treat patients with mental health conditions.
Its medical leaders were influential in estab-
lishing the mental health integration (MHI)
quality improvement programme. Over the
last decade Intermountain has implemented
MHI throughout 68 primary care clinics to
identify patients with mental health or sub-
stance use disorders and to treat them and
refer them to additional services. MHI makes
available a clinical team and offers financial
support to the primary care doctor.
Sustained results show that MHI leads to
improved functional status in patients and
improved satisfaction and confidence among
physicians in managing mental health prob-
lems as part of routine care at a neutral cost.
The primary care environment presents
opportunities and challenges for reducing
harm in young female drinkers. Alcohol
dependence and underage drinking are com-
plex family health problems and are intensely
personal and isolating issues for girls and
young women. It is an opportune consultation
in which teenagers’ health risks are uncov-
ered and wellness can be promoted. Although
guidelines are available, the routine screening
of young women for harmful behaviours var-
ies widely among primary care doctors.
The M H I assessment begins with a
common screening toolset administered by
the family doctor, who determines, with the
patient and family, the severity of the mental
health concerns. It includes comprehensive,
self reported measures of family history and
relational support, environmental stressors,
use of substances, depression, anxiety, and
bipolar and attention deficit disorders.
The results determine whether the doctor
continues routine treatment or triages the
patient to the MHI psychologist, psychiatrist,
or psychiatric nurse practitioner for prompt
consultation. The team includes a nurse
care manager, who provides support and
feedback to the doctor, the patient, and the
family. The care manager also provides edu-
cation and information and links the patient
to community resources, if this will benefit
the patient.
The team members use harm reduction
strategies to improve education and to pro-
vide treatment for alcohol misuse. They also
facilitate the involvement of families and
community resources in social support and
reinforcement of abstinence. Strategies that
are tailored to the preferences of patients and
communities are more likely to result in posi-
tive behaviour change.
Intermountain’s MHI database identified
123 263 patients across all age groups, 45% of
whom were women (55 568). The data show
that 25 945 girls and women aged <39 were
being treated for substance misuse and that
9107 had comorbidity of depression and sub-
stance misuse. Of those with a diagnosis of
substance misuse, 420 (1.6%) were 18 years
old or younger.
Adopting a harm reduction approach to
help young female drinkers and their fami-
lies will require quality improvement inter-
ventions that provide institutional support for
the primary care doctor to deliver care that
is matched to the family’s and community’s
social, financial, and cultural healthcare pref-
erences for wellness. Higher levels of social
capital exert strong protective effects against
alcohol misuse and harm.
Intermountain’s MHI programme is one
example of a quality improvement interven-
tion that tackles social capital needs and such
barriers as failed access and limited, frag-
mented treatment choices, which many fami-
lies face when trying to find help.
Brenda reiss-Brennan mental health integration director
Brenda.reiss-brennan@imail.org
Wayne cannon medical director
Primary Care Clinical Programs, Intermountain Healthcare
lucy a savitz senior scientist
pascal Briot analyst
Institute for Health Care Delivery Research,
Intermountain Healthcare, Salt Lake City, Utah
alcohol is our favourite
drug, and it is distressing
to see young women
pressured into misusing it
excessiVe drinking in young WoMen
Not just a “lifestyle disease”
954 BMJ | Making a difference | 26 april 2008 | VoluMe 336
medical milestones
Help and hope at the bottom
of the pile
Improving shared decision making
in osteoarthritis
Chronic pain is common—but it isn’t sexy.
People who through no fault of their own have
their lives demolished by pain deserve our
help. The Pain in Europe survey found that
19% of almost 50 000 people questioned in
a poll had chronic pain, defined as pain of at
least moderate severity occurring almost every
day for at least six months. One in five of these
people had pain for more than 20 years, and
most had pain for more than five years.
The main causes are back pain and arthritis,
and the incidence of chronic pain increases
with age. Our populations are ageing. In the
United States the number of people aged 65
years or older will have almost doubled by 2025
to 63 million, from 37 million in 2006, and
there will be a third of a million Americans over
the age of 100 years by 2020.
Chronic pain has a substantial impact on
quality of life. A Dutch study that analysed eight
large datasets by quality of life factors ranked
different medical problems. Musculoskeletal
conditions (including arthritis and back pain)
had the most severe effect on quality of life.
This impact of everyday pain on quality of life is
something that has yet to be fully appreciated
by those who organise our health services and
allocate resources.
Most normal or nociceptive pain can be
managed with conventional painkillers, from
paracetamol through to morphine, with the
more powerful painkiller added for more severe
pain. Most pains wax and wane, and flexible
prescribing takes time to explain. Problematic
pains include severe pain on movement with
little pain at rest, leaving patients oversedated
with painkillers when they are not moving.
Problematic side effects of the drugs include
drowsiness and constipation, a major burden
for elderly people.
Perhaps the most testing pains are
those that result from nerve damage, the
neuropathic pains. Peripheral nerve damage
from surgery, trauma, back pain, and the
classic post-herpetic neuralgia, painful
diabetic neuropathy, and trigeminal neuralgia
often respond poorly to conventional
painkillers and need the unconventional
drug classes, the antidepressants and
the antiepileptics. Titrating these drugs
to maximise pain relief and minimise side
effects is fiddly but necessary.
Common treatments for osteoarthritis include
physiotherapy, bracing, pharmacotherapy, and
joint replacement surgery. When treatments are
proposed that increase the risk of harm (such as
non-steroidal anti-inflammatory drugs, opioids,
or surgery), patients’ values concerning potential
benefits and harms need to be considered. How-
ever, clinicians find it difficult to judge patients’
values, which are also often based on unrealistic
expectations. Therefore tools that improve the
shared decision making process are important.
Shared decision making is a process in
which the patient and clinician together reach
an informed decision about the plan of care on
the basis of the patient’s clinical needs, priori-
ties, and values. The clinician’s expertise lies in
diagnosing and identifying treatment options
according to clinical priorities; the patient’s role
is to identify and communicate their informed
values and personal priorities, as shaped by their
social circumstances.
Patient decision aids are tools that prepare
patients for consultations by explaining options,
quantifying risks and benefits, helping patients
to clarify their values, and providing structured
guidance in deliberation and communication. A
review of 10 systematic reviews of patient deci-
sion aids found that they improved patients’
participation, increased their knowledge of
treatment options, realigned their expectations,
and improved the match between their values
and subsequent treatment decisions. The aids
also reduced the overuse of elective surgery (for
herniated disc, for example) without apparent
adverse effects on health outcomes. Another
study showed the potential for patient decision
aids to reduce inequalities among ethnic groups.
The Cochrane inventory of patient decision aids
(www.ohri.ca/decisionaid) uses international
standards to rate their quality. Decision aids for
osteoarthritis treatment are available online, in
brochures, and on DVD.
In 2006, patient decision aids were accessed
more than eight million times, mostly through
the internet. Ideally, these tools should be linked
to clinical care processes, but practitioners report
several barriers to implementation: inappropri-
ate content for their patients; forgetting to offer
them; inadequate time; content that was too
complex or too simple; and cost. Practitioners
are more likely to use patient decision aids if
they have a positive effect on patients’ outcomes
m a k i n g a d i f f e r e n c e
Management
of chronic pain
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
The burden of chronic pain for
those who have it and their
families is substantial, says
Henry mcQuay, and these
patients deserve better.
dawn stacey and colleagues
describe an example of quality
improvement in practice for one
group of people with chronic pain,
those with osteoarthritis
BMJ | Making a difference | 26 april 2008 | VoluMe 336 955
Most chronic pain is managed with drugs
in primary care. Obstinate pains—pains that
resist drug control at acceptable levels of side
effects—may need other treatment options,
from injections through to a multidisciplinary
pain management programme. The necessary
skill mix includes nursing, psychology,
drug expertise, and injection options and
physiotherapy.
The imperative to provide this tier of
expertise is humanitarian and economic.
Patients with chronic pain who are managed
poorly will bounce around the healthcare
system, becoming more and more
exasperated and consuming considerable
resources. Well managed pain contains this
excess use of resources, saving an estimated
£1500 (€1900; $3000) per patient per year.
Set against the background of the large
economic burden of chronic pain, the cost of
this tier of expertise is marginal.
An estimate of the financial burden of
musculoskeletal illness in the United States
argued for $50bn, and the indirect costs
of back pain in the United Kingdom are
estimated at £11bn. Certainly, chronic pain
increased costs for payers by more than
double, in comparison with matched controls
without pain ($C4200 (£2070; €2600;
$4100) versus $C1800 a year), an excellent
Canadian database survey found. There are
also financial implications for the person with
the pain, reduced household income being
the most obvious example.
No one thing will improve this situation.
We need more and better basic research, the
most tangible products of which are likely to
come from the major drug companies. But
there have been pitiably few new painkillers
in the past 30 years.
Clinical research and practice are now much
more likely to make a difference, helping
to make existing evidence sensible and
understandable so that people can use it. The
evidence base in pain enables us to assess
the relative effectiveness of treatments, for
instance in nociceptive and neuropathic
pain and indeed in migraine. This evidence
does not dictate what analgesic to use for a
particular patient but does help us to make
choices about treatments on the basis of their
effectiveness, propensity for harm, and cost.
Then there’s the provision of care. Chronic
disease comes low on the political priority
list, and chronic pain just gets forgotten.
The burden for the sufferers, their families,
and society is substantial and merits better
treatment.
The mark of a gracious society is how it
treats those with least voice. That chronic
pain puts people at the bottom of the pile
is precisely why we should be agitating on
their behalf for a fairer share of the medical
resource cake.
Henry McQuay professor of clinical anaesthetics
Nuffield Department of Anaesthetics, University of Oxford
henry.mcquay@pru.ox.ac.uk
or on the clinical interaction. Orthopaedic sur-
geons rated the content of patient decision aids
for osteoarthritis treatments as good to excel-
lent and were motivated to use them to improve
patients’ understanding but had concerns about
interrupting the flow of clinic work.
Patient decision aids have been implemented
successfully in specialist clinics in the United
Kingdom and Canada and in specialist and pri-
mary care clinics in the United States. Patients
with osteoarthritis, for example, use decision aids
together with balanced, evidence based informa-
tion on the treatment options and the likelihood
of the benefits and harms of those treatments.
The decision aids help patients clarify their val-
ues concerning benefits and harms by describing
what it is like to experience them. Patients then
complete a personal decision form, which elicits
their knowledge, values, preferred option, and
any unresolved “decisional needs” (for example,
uncertainty about their preference, gaps in their
knowledge of the options, lack of clarity of their
values concerning benefits and harms, and sup-
port needs). This information is summarised on
a “patient preference report,” which is sent to the
clinician to “close the loop” on decision making
with the patient.
In Canada, patients on the waiting list for a
surgical consultation are screened for eligibility
by trained general practitioners or physiothera-
pists before they receive a decision aid and
personal decision form. The Canadian patient
preference report (see http://makinga difference.
bmj.com) lists clinical priorities as determined by
self reported pain and functional limitations, the
trained screener’s assessment of surgical prior-
ity, and the patient’s preferences and decisional
needs. The report is paper based, but one author
(NC) has developed a similar computerised
report as part of the US Veterans Administra-
tion’s electronic patient health records.
Using the patient preference report together
with patient decision aids has the potential to
improve the clinical encounter and to provide
the incentive that practitioners need to over-
come their resistance to using the aids. For
example, when patients arrive at a surgeon’s
consultation with their preference report, the
surgeon can focus on issues of concern to the
patient, such as fears of side effects of surgery.
Thus the surgeon’s time will be used more effi-
ciently, and the care provided is more patient
centred, so patients and practitioners are both
more likely to be satisfied with the process.
Outcomes such as pain reduction and
improved function cannot be the sole quality
indicators in treatments that involve trade-offs
between potential benefits and harms. In such
treatment decisions, the quality of decision mak-
ing should be defined by how well the chosen
treatment option matches the features that mat-
ter most to the informed patient. Patient prefer-
ence reports document decision quality as an
indicator of the shared decision making proc-
ess. In addition to monitoring postoperative
complications such as infections, these reports
can be used by quality improvement teams to
monitor the extent to which high quality deci-
sions are achieved and decisional needs met.
Patient decision aids prepare patients for
making shared decisions concerning treatment.
Patient preference reports that summarise
patients’ clinical and decisional needs improve
communication. With standardised measures
and documentation of decisions, healthcare
organisations can monitor and include deci-
sion quality as another indicator of the quality
of their programmes.
dawn stacey assistant professor, School of Nursing,
University of Ottawa dawn.stacey@uottawa.ca
gillian Hawker professor of medicine, Division of
Rheumatology, University of Toronto
geoff dervin chairman, division of orthopaedic surgery,
Department of Surgery, University of Ottawa
ivan tomek assistant professor, Department of Orthopaedic
Surgery, Dartmouth-Hitchcock Medical Center and
Dartmouth Medical School, Lebanon, New Hampshire
nan cochran associate professor, Department of Medicine
and Community and Family Medicine, Dartmouth Medical
School, Hanover, New Hampshire
peter tugwell professor
Faculty of Medicine, University of Ottawa
annette M o’connor professor, School of Nursing,
University of Ottawa
an example of a patient preference report is at
http://makingadifference.bmj.com
chronic disease comes low
on the political priority list,
and chronic pain just gets
forgotten. the burden for the
sufferers, their families, and
society is substantial
Manage Ment of cHronic pain
956 BMJ | Making a difference | 26 april 2008 | VoluMe 336
medical milestones
The challenge of safer prescribing
Patients over 65 years old bear the greatest burden
of illness and thus are the greatest beneficiaries of
drugs to prevent, ameliorate, or treat conditions.
One of the most rapidly growing segments of the
population, they consume an ever increasing
proportion of all prescribed drugs.
For decades elderly people were excluded
from randomised trials of many preventive drugs,
reinforcing scepticism over whether they would
benefit from treatment of conditions such as
hypercholesterolaemia and hypertension. But
elderly patients may benefit from such treatments
at least as much as their younger counterparts.
In fact, because of the higher prevalence of
preventable disease in older patients, they often
derive greater benefits from such prescribing than
younger patients.
For this reason, much primary care has
shifted from the treatment of acute illness to the
management—often pharmacological—of “risk
states” in elderly people, including hypertension,
hypercholesterolaemia, and osteoporosis, as
well as diseases such as atrial fibrillation, heart
failure, and diabetes. Solid evidence from clinical
trials indicates that appropriate prescribing can
substantially reduce the burden of preventable
morbidity in these conditions. Although such
concerns are traditionally seen as a problem of the
industrialised world, they are rapidly becoming a
major issue facing developing countries as well.
But this benefit comes at a price: the high
prevalence of adverse drug reactions in older
patients. The problem has several sources.
One is the altered pharmacokinetic status of
elderly people; they are less able to metabolise
and excrete many common drugs, even in the
absence of liver or kidney diseases. They may
also have altered pharmacodynamic responses,
with some receptor systems (such as those for
opiates and benzodiazepines) having greater
sensitivity with advancing age, and others (such
as those for insulin) showing reduced sensitivity.
Unfortunately, the under-representation of older
patients (especially frail ones) in clinical trials
makes it even harder for the prescribing doctor to
prevent untoward drug reactions in older patients.
When an elderly person experiences an adverse
drug reaction, it may be mistakenly attributed
by the patient or doctor to a new disease or
(even worse) the ageing process itself. Examples
include the parkinsonian side effects of many
antipsychotic drugs and the fatigue, confusion,
Quality improvement for the care of older
people has become a priority in many
countries. Elderly people consume a large
proportion of health care, including drugs,
and evidence shows that prescribing to this
group is often inappropriate. Inappropriate
prescribing occurs in all care settings and
at the transition between settings. Negative
consequences include adverse drug events,
higher costs for the patient and society, and
impaired quality of life.
Specific approaches tailored to the needs
of frail elderly people are needed. A recent
review of ways to optimise prescribing to
older people found that geriatric medicine
services (involving a multidisciplinary team
that includes a geriatrician and other health-
care providers with specialised geriatrics
training), involvement of pharmacists in
care, and computerised decision support can
all improve the quality of prescribing to this
group in different settings.
Quality improvement strategies are more
likely to be effective when there is direct
interaction with the prescriber and when the
strategies are provided at the time of prescrib-
ing. In nursing homes, involvement of nurses
in strategies is another important factor. The
effect of educational interventions is mixed,
although the lack of training of doctors in
geriatrics is often cited as a cause of inap-
propriate prescribing.
However, widespread diffusion of effec-
tive approaches has not yet occurred. As in
many other fields, translating research into
practice is a delicate task. In the domain of
quality improvement for safer prescribing
to older people, this is further complicated
by a lack of strong data showing the impact
of effective approaches on important health
outcomes. Also, the question of who should
meet the cost of such approaches is a mat-
ter for debate. And we lack data on the cost
effectiveness of strategies. With regard to
computerised decision support systems, we
first need systems that have been tailored to
elderly patients before they can be imple-
mented more widely.
It is important to take environmental
barriers into account. Some barriers can
be specific to the setting of care or even
to the country of practice. For example,
improving the quality of prescribing of neu-
roleptics in nursing homes is less likely to
occur without an increase in staffing and
resources. Direct contact with prescribers
m a k i n g a d i f f e r e n c e
A substantial cause of preventable
illness
adverse drug
reactions in
elderly people
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
Doctors should pay greater
attention to managing the risk-
benefit relationship to improve care
of patients over 65, urge
Jerry avorn and William shrank.
The challenge of safer prescribing,
says anne spinewine, lies in
shared decision making
BMJ | Making a difference | 26 april 2008 | VoluMe 336 957
or depression-like symptoms that can result from
excessive use of heavily marketed psychoactive
drugs. Elderly people are at special risk of
such misattributions because of the pervasive
cultural assumption that growing older brings
with it a collection of inherent and inevitable
disabilities. The problem is compounded by the
slender preparation that most students receive in
geriatrics and in clinical pharmacology. There is
ample evidence of the clinical burden of iatrogenic
illness in the elderly. Studies of US patients aged
over 65 indicate that each year more than 180 000
life threatening or fatal adverse drug effects occur
in the outpatient setting, of which over half may
be preventable. Another study attributed 6.5%
of all hospitalisations in the general population
to adverse drug events, a rate that is likely to be
higher in elderly people.
Despite these gloomy realities, the most
notable aspect of drug induced illness in
elderly people is the most encouraging. Once
recognised, a side effect of a drug is probably
the single most reversible affliction in all of
geriatric medicine. Usually, care of elderly people
requires the management of conditions with a
downward course. But discovering that a symptom
is caused by a drug presents an uncommon
opportunity to effect a total “cure” by stopping
the offending prescription or lowering the dose.
In our own practices we have often seen patients
on a seemingly inexorable trajectory towards
institutional care whose functional capacity was
restored by thoughtful reassessment of their drug
regimens. This has led to the useful if overstated
recommendation that “any new symptom in an
older patient should be considered a possible
drug side effect until proved otherwise.”
As well as being alert to the possibility of new
iatrogenic problems, it is also prudent to reassess
a patient’s entire drug regimen at least twice a
year, including categories often overlooked by
patients and doctors: drugs bought over the
counter and “nutraceuticals” such as herbal
remedies or dietary supplements. Although these
products are often devoid of therapeutic benefit,
they can impose important toxicities, and their
interactions with prescribed drugs are poorly
understood. With growing use of the electronic
medical record, we can expect that drug regimen
review will increasingly be prompted by the
computer in the course of routine care. In one
computerised system for entering prescription
orders, the system automatically checks all
prescribed drugs and dosages against the age
of the patient and recommends a lower dose or
different drug if necessary.
Non-compliance with prescribed drug regimens
can produce a different kind of drug related
morbidity. In this “silent epidemic,” as much as
half of prescribed drugs are simply not taken.
Considerable morbidity results from this other
kind of drug related illness in elderly people, in
which potentially useful treatments are not taken
or (because of misplaced therapeutic nihilism) not
prescribed in the first place.
Broader systems based and educational
approaches are emerging to guide the evidence
based use of drugs in older patients so as to
reduce their burden of iatrogenic illness while
ensuring that needed drugs are prescribed
properly. Better attention to managing this benefit-
risk relationship will play an increasingly important
role in maintaining and improving the health of an
ageing population.
Jerry avorn professor of medicine javorn@medsoc.harvard.edu
William H shrank instructor in medicine
Division of Pharmacoepidemiology and Pharmacoeconomics,
Harvard Medical School, Boston
(such as with a clinical pharmacist) is not
always feasible in nursing homes, and this
can decrease the efficacy of the intervention.
In some countries pharmacists do not have
access to patients’ records. Consequently, a
quality improvement strategy that is effec-
tive in one care setting cannot be directly
transposed to another without adaptation.
The same applies to transposition between
countries, because of differences in practice
environments and culture.
Big improvements in communication at
the interface between primary and second-
ary care are urgently needed too. Many
adverse drug events result from problems
with communication relating to manage-
ment of drugs during the transition between
care settings. National online databases of
drugs dispensed to patients (as in Denmark),
to which all doctors and pharmacists have
access, should help to tackle such problems.
The same should apply to patient records.
Such a challenge should be taken up at the
national level, although of course steps must
be taken to protect patients’ privacy. Better
communication among prescribers to track
changes in treatment and to record the
reasons for those changes will also help to
avoid the fragmentation of care. This aspect
should be included in measures of quality
performance.
Quality improvement strategies for safer
prescribing in older people must include
shared decision making. The beliefs and
preferences of older patients concerning
treatment affect adherence and, in turn, the
safe use of drugs. Several recent studies
have shown the importance of considering
patients’ wishes, but many questions remain
unanswered.
The high prevalence of people with
dementia and the need to involve carers
in decisions complicate further the task
of shared decision making. Furthermore,
many prescribers are not familiar with the
principles of shared decision making or are
reluctant to engage in it because of the extra
time needed. Therefore a huge amount of
work needs to be done here, from research
to implementation. Education and train-
ing programmes for prescribers should
include sessions on communicating with
patients and on involving them in decisions.
Health authorities should also consider
including this dimension of care in quality
performance measures.
What are the most urgent of the unan-
swered research questions? We need more
clinical trials that enrol frail elderly patients,
to enhance our knowledge of the benefits and
risks of treatments in this group. With regard
to quality improvement strategies, we need to
evaluate the effect of multifaceted approaches
on important health outcomes and costs. This
is a challenging task that will certainly require
multicentre trials with large samples.
It is important that quality improvement
approaches are multidisciplinary in nature,
use computerised decision support systems
that are specific to this age group, and take
the patient’s view into account.
Meanwhile, national health systems
should provide incentives for prescribers
to regularly review treatments, develop
information systems to facilitate seamless
care, and encourage the implementation
of multidisciplinary approaches including
geriatric medicine services. Quality improve-
ment strategies need to be customised
to account for differences in patients,
prescribers, and environmental factors.
anne spinewine lecturer in pharmacotherapy
Cliniques Universitaires de Mont-Godinne, Yvoir, Belgium
anne.spinewine@uclouvain.be
Big improvements in
communication at the
interface between primary
and secondary care are
urgently needed
adVerse drug reactions in elderly people
The challenge of safer prescribing
958 BMJ | Making a difference | 26 april 2008 | VoluMe 336
medical milestones
Reliable comfort and meaningfulness
We must apply the lessons learnt from cancer
(often slowly and painfully) to the growing
number of people now dying from non-
malignant illnesses. New theoretical insights
into the trajectories of decline in a range of
long term conditions—together with technical
developments that aid the delivery of care in
people’s own homes and the timeless clinical
qualities of listening, compassion, empathy,
and inspiring hope—mean that we now have
the means to make a real difference to the
lives of so many people in the throes of their
final illness and to the lives of their loved ones.
Getting end of life care “right” lies at the heart of
what it means to be a civilised society, and thus
prioritising this area needs no apologies.
In 2005 cancer was responsible for a relatively
small percentage of deaths worldwide (13%),
while other long term conditions caused 47%. By
2030 the annual number of deaths around the
world is expected to rise from 58 million to 74
million, with conditions related to organ failure
and physical and cognitive frailty responsible
for most of this increase. Yet despite these rapid
demographic changes, palliative care services
typically still cater only for people with cancer. For
example, hospices in economically developed
countries currently provide 90% of their care to
patients with cancer. Moreover, people dying
from cancer usually have needs lasting for weeks
or months, whereas those dying from organ
failure or old age often have unmet needs that
extend over many months or years. It is little
wonder, then, that people dying of the “wrong”
condition and their carers, whether family, social,
or professional, are increasingly frustrated by the
major obstacles to accessing appropriate care.
The drive to extend palliative care beyond
cancer has so far been hampered by a
combination of factors: prognostic uncertainty;
funding difficulties (in the United Kingdom
influential cancer charities support many
hospices and outreach programmes); lack of
palliative care clinicians with expertise in non-
malignant diseases; and a hitherto relatively
weak evidence base in relation to appropriate
models of care. Although the empirical evidence
base remains weak, we do now have a good
theoretical understanding of when and how to
intervene in a range of conditions.
Prognostic uncertainty can and does hinder
clinicians in thinking and planning ahead. Most
To live well in the time left to them, patients
with fatal chronic conditions need confidence
that their healthcare system ensures excellent
medical diagnosis and treatment, prevention of
overwhelming symptoms, continuity and com-
prehensiveness of care, advance care planning,
patient centred decisions, ands support for car-
ers. Hospices and palliative care have improved
these dimensions of quality for people dying
from cancer. Applying those insights to other
fatal chronic conditions could greatly improve
the last part of life, although the endeavour
entails substantial challenges.
End of life care for elderly people will have
to last for a long time: being disabled enough to
need daily help now continues for an average
of more than two years before death. Patients
with non-malignant, long term illness are
older and frailer than patients with cancer (as
are their carers). Transfers between hospitals,
nursing homes, and home care often engender
delirium, depression, falls, treatment errors, and
pressure ulcers, in addition to the common hos-
pice problems of pain and loss. Entities that
are often unfamiliar to hospices—such as social
insurance programmes for poor people and dis-
ability transportation—will need to be partners
in care.
How can we ensure reliable services for
all in the last phase of life? Systematic qual-
ity improvement and policy reforms will offer
reliable and efficient strategies if they focus on
the three common patient trajectories: short
decline typical of cancers; intermittent exac-
erbations and sudden death typical of organ
system failures; and the slow dwindling course
typical of frailty.
For gains to be achieved and sustained, qual-
ity improvement requires clear goals, appropri-
ate teams, ways to monitor progress, sequential
testing of improvements, and the institution-
alisation of improved processes. Local quality
improvement has a track record of success in
correcting some shortcomings of ordinary care.
These include improving pain prevention and
treatment (such as by routinely responding at a
patient’s home within a time period determined
by the patient or a family member), developing
and implementing advance care plans (decid-
ing whether to attempt resuscitation, for exam-
ple), and preventing and healing pressure ulcers
(one quality improvement programme reduced
the incidence of full thickness lesions by 69%).
Quality improvement projects can reduce over-
treatment near the end of life, improve prognos-
tication and counselling by providing automatic
m a k i n g a d i f f e r e n c e
palliative care
beyond cancer
Longer versions of all the articles
in the Making a Difference
supplement, including references
and figures, are at
http://makingadifference.bmj.com
Care for all at the end of life
scott murray and aziz sheikh
say that the lessons learnt from
palliative care for cancer need to
be applied to other fatal conditions.
Healthcare delivery that is tailored
to the varying needs of patients
with these diseases will be
crucial in making a difference,
says Joanne lynn
BMJ | Making a difference | 26 april 2008 | VoluMe 336 959
patients with heart failure die when they are
still expected to live for more than six months,
and accurate prognostication is also virtually
impossible in people with chronic obstructive
pulmonary disease (COPD). Although this
uncertainty is frustrating for doctors, its very
presence can be a basis for initiating end of life
discussions.
Recent work is helpful in identifying critical
events and stages when a palliative approach may
be introduced. People with progressive chronic
illnesses follow three characteristic trajectories
(see figure on http://makingadifference.bmj.
com): a cancer trajectory, with steady progression
and usually a clear terminal phase; an organ
failure trajectory, with gradual decline punctuated
by episodes of acute deterioration and eventually
a seemingly unexpected death; and a trajectory of
prolonged gradual decline (typical of physical or
cognitive frailty).
Hospices provide excellent and accessible
care to people with cancer but are not configured
to address the needs of patients who don’t have
cancer. So what can we do? A typical critical
juncture in an organ failure trajectory, such
as hospitalisation for acute heart failure or an
exacerbation of COPD, should trigger a holistic
assessment and care plan for the next stage
of the illness. Practical models of care are now
being formulated and tested to fit the other two
trajectories. Some Scottish general practitioners
are, for instance, documenting a care plan for
every patient admitted to hospital with COPD.
Clinicians are thus alerted to “change gear” from
routine chronic disease management to a more
personalised palliative care approach, while
continuing active treatment. These trajectories
thus help us consider what should be done to
promote quality of life rather than focus on what
can be done, which may lead to futile treatment.
A strategic policy overview of these trajectories
may also help services to consider all people with
serious chronic illnesses equitably, rather than
cancer “top slicing” care.
Palliative care for everyone underscores the
need for anticipatory personalised care for all
people with life threatening illnesses. Technical
developments such as video conferencing
and remote monitoring devices may help in
realising this aspiration, but far more important
are the medical vocation’s essential clinical
skills—active listening, respecting autonomy,
and empathic care—none of which depends
on first world infrastructures. These can be
implemented anywhere in the world, as long
as health services respect the importance of
clinicians and patients having time together,
ideally in the context of a relationship that
allows for personal continuity of care.
Facilitating a good death should be recognised
as a core clinical proficiency, as basic as diagnosis
and treatment. Death should be managed
properly, integrating technical expertise with a
humanistic and ethical orientation. We also need
research into how best to identify, assess, and
plan the care of all patients who are sick enough
to die, and we need education that keeps alive
our humanity and sense of vocation. This is an
enormous challenge in politicised, market driven
healthcare models but one that will make an
important difference to those most in need.
scott a Murray professor of primary palliative care
scott.Murray@ed.ac.uk
aziz sheikh professor of primary care research and development
Division of Community Health Sciences: General Practice
Section, University of Edinburgh
a figure showing the three main trajectories of decline at
the end of life is at http://makingadifference.bmj.com
feedback to clinicians, and implement shared
accountability and effective drug reconciliation
throughout changes of care settings.
Sustainable excellence requires supportive
social policies. Practitioners working in trust-
worthy arrangements for delivering care must
make a living. But powerful economic interests
and social forces now encourage the oversell-
ing to patients and families of treatments with
little chance of success. Citizens and clinicians
must encourage political leaders to champion
more appropriate policies, such as allocating
healthcare payments to reward continuity and
comprehensive primary care and ensuring an
adequate income in retirement for family mem-
bers who are carers.
Such reforms will be more efficient when
they set out to match eligibility and service
patterns to the three dominant patterns in the
last phase of life. If palliative and hospice care
are available only to those who die in a pre-
dictable way in a short time, most people will
never qualify, because their timing of death will
stay uncertain until very close to the end of
life. A short period of hospice care does meet
the needs of many cancer patients, but people
with heart and lung failure are better served
by having a much longer period of support for
self care and rapid response to help people at
home in times of crises. In contrast, people with
dementia or who are frail are often best served
by having many years of support to carers in
the family. Delivery systems that are tailored to
the usual needs of these groups would enable
clinicians to customise care plans to the prefer-
ences of individual patients and their families.
The combination of specific innovations
from quality improvement, encouragement in
the form of payment and regulatory policy,
and services tailored to particular groups of
patients is a powerful package for reform. In
various forms, such a strategy is being pur-
sued in many places: the United Kingdom,
Saskatchewan in Canada, and Sweden, and in
the United States by Kaiser Permanente, the
Veterans Affairs Health System, and Medi-
care’s Quality Improvement Organizations in
each state.
Every clinical team can use quality improve-
ment to adapt its own care system to the needs
of patients with fatal illnesses. For example,
doctors can shoulder the burden of helping
patients and families come to a realistic view
of the outlook and to collaborate in making
plans. Claiming to be sustaining hope, doctors
often offer improbable treatment plans, falsely
implying that all will be well if the patient and
family go along with them. Instead, an hon-
est appraisal of the situation, the likely course
of the illness, and the treatment alternatives
would allow the patient, family, and clinicians
to negotiate the priorities among various goals,
the preferred strategy, and a timeframe for
reconsideration.
The ageing of populations will greatly
increase the number of sick and dying older
people, while smaller families and reduced
retirement security will shrink the number of
available carers in the family. The coming cri-
sis is obvious. Policy makers and practitioners
must learn to support family carers, and local
quality improvement and innovation in govern-
mental policy are the right prescriptions.
The dying patient’s clinical care team must
provide highly skilled diagnosis and treatment.
Doctors must be able to promise to prevent
pain and dyspnoea near death, for example.
Specialist palliative care is well established in
many countries, but palliative care skills among
those professionals who serve most patients—
long term care nurses, home care teams, gen-
eralist physicians, and specialist physicians—lag
far behind.
Joanne lynn medical officer
Office of Clinical Standards and Quality, Centers for Medicare &
Medicaid Services, Baltimore Joanne.lynn@cms.hhs.gov
local quality improvement
has a track record of success in
correcting some shortcomings
of ordinary care
palliatiVe care Beyond cancer
Reliable comfort and meaningfulness
Care for all at the end of life
