Coping with loss: Blindness and loss of other sensory and cognitive functions

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Education and debate
Personal paper
Ethics and evidence based medicine
Ian Kerridge, Michael Lowe, David Henry
Evidence based medicine is founded upon an
ideal
—
that decisions about the care of individual
patients should involve the “conscientious,explicit and
judicious use of current best evidence.”1Several publi-
cations are dedicated to evidence based medicine, and,
at an international level, the Cochrane Collaboration
has been formed to gather, analyse, and disseminate
evidence derived from published research.2Several
practical approaches to evidence based medicine in
clinical decision making have also been described.34
Evidence based medicine, it is claimed, leads to
improvements in clinicians’ knowledge,reading habits,
and computer literacy; provides a framework for
teaching; enables junior team members to contribute
to decisions; and allows better communication with
patients and more effective use of resources.5From an
ethical perspective, the strongest arguments in support
of evidence based medicine are that it allows the best
evaluated methods of health care (and useless or
harmful methods) to be identified and enables patients
and doctors to make better informed decisions.56
However, the presence of reliable evidence does
not ensure that better decisions will be made. Claims
that evidence based medicine offers an improved
method of decision making are difficult to evaluate
because current practice is so poorly defined. Medical
decision making draws upon a broad spectrum of
knowledge
—
including scientific evidence, personal
experience, personal biases and values, economic and
political considerations, and philosophical principles
(such as concern for justice). It is not always clear how
practitioners integrate these factors into a final
decision, but it seems unlikely that medicine can ever
be entirely free of value judgments.
We review ethical concerns associated with
evidence based medicine
—
in particular that it invites a
simplistic approach to the role of evidence in
medicine, which can be misinterpreted and may not
allow for the complexity of clinical decision making.
The philosophical basis
Evidence based medicine represents a practical exam-
ple of consequentialism
—
the proposition that the
worth of an action can be assessed by the measurement
of its consequences. Criticisms of consequentialist
philosophies may be considered under three main
headings. Firstly, many important outcomes cannot be
adequately measured or defined. Secondly, it is often
unclear whose interests should be considered in deter-
mining outcomes. Thirdly, consequentialism may lead
to conclusions that are thought to be unethical from
other points of view. These criticisms may equally apply
to evidence based medicine.
Immeasurable outcomes
The first philosophical criticism of evidence based
medicine is that many important outcomes of
treatment cannot be measured. This arises from the
fact that evidence based medicine claims to provide a
simple, logical process for reasoning and decision
making
—
look at the evidence and decide accordingly.
But to make balanced decisions, all the relevant conse-
quences of an action must be considered. Unfortu-
nately, current measures of some outcomes of medical
treatment (such as pain) are inadequate; some (such as
justice) may not be measurable; and other complex
outcomes (such as quality of life) may not even be
adequately definable.78
The philosopher Bernard Williams notes that
values which may be easily quantified in economic
terms often require comparison with values which are
Summary points
Evidence based medicine is based on a strong
ethical and clinical ideal
—
that it allows the best
evaluated methods of health care to be identified
and enables patients and doctors to make better
informed decisions
Evidence based medicine is unable to resolve
competing claims of different interest groups
Collecting sufficient satisfactory evidence raises
problems
—
randomised controlled trials are only
possible where there is genuine “therapeutic
equipoise”
Crude application of results of clinical trials to
individual care may disadvantage some patients
Allocating resources on the basis of evidence
involves implicit value judgments and could imply
that lack of evidence means lack of value
Clinical Unit in
Ethics and Health
Law, Faculty of
Medicine and
Health Sciences,
University of
Newcastle,
Callaghan, New
South Wales 2308,
Australia
Ian Kerridge,
clinical lecturer
Michael Lowe,
clinical tutor
Faculty of Medicine
and Health
Sciences, University
of Newcastle
David Henry,
professor of clinical
pharmacology
Correspondence to:
Dr I Kerridge, John
Hunter Hospital,
Locked Bag No 1,
Newcastle Mail
Region Centre,
NSW 2310,
Australia
BMJ 1998;316:1151–3
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not quantifiable. “Again and again defenders of such
values are faced with the dilemma of either refusing to
quantify the value in question, in which case it
disappears from the sum altogether, or else of trying to
attach some quantity to it, in which case they mis-
represent what they are about and also usually lose the
argument, since the quantified value is not enough to
tip the scale.”9This is particularly the case in medicine,
where intangible values such as justice or quality of life
are frequently balanced against easily quantified values
such as cost or mortality.
Deciding between competing claims
The second philosophical criticism, that it may be
impossible to decide between competing claims of dif-
ferent stakeholders, is emphasised by the manner in
which patients continue to have little influence over the
priorities of research. Evidence based medicine claims
to reject the power of expert opinion but it is still
mostly doctors who determine research objectives,
who interpret research data, and who implement
research findings. A number of commentators have
called for greater involvement by consumer groups in
setting research agendas, but how conflicts between the
agendas of the different stakeholders are to be resolved
remains unclear.10 11 Evidence based medicine is unable
to address political concerns because the values of dif-
ferent stakeholders, and hence the way in which they
interpret evidence, cannot always be made congruent
with each other.
At odds with common morality
The third philosophical criticism, that evidence based
medicine may lead to activities that seem at odds with
common morality, arises from the fact that evidence
based medicine assesses interventions solely in terms
of evidence of efficacy. An example of the difficulties
that may arise from this approach occurs in the field of
meta-analysis. Researchers performing meta-analyses
are generally urged to search as widely as possible for
data and to use unpublished studies if they are
methodologically sound. However, valuable research
findings may arise from unethically conducted
research and data from unpublished studies may not
meet the ethical safeguards that are demanded by pub-
lishers. In such cases it may be unclear whether results
should be used or discarded.
Most of the discussion of this topic has focused on
Nazi experimentation,12 but there are many more
recent examples of unethical research.13 The New Eng-
land Journal of Medicine has stated that it will not
publish results of unethical research, regardless of
scientific merit; but what these standards mean in prac-
tice is not entirely clear.13–15 For example, the Gruppo
Italianao per lo Studio della Sopravivenza nell Infarto
Micardio (GISSI-2) trial, published in the Lancet in
1990, did not require the informed consent of trial
subjects.16 Although few present day ethics committees
would accept this standard, this study has been widely
quoted and included in many meta-analyses. Ethically
it seems clear that both researchers and publishers
should consider the ethical basis of studies that
are included in meta-analysis, but the extent of this
obligation remains uncertain.
Collecting evidence
Randomised controlled trials
Proponents of evidence based medicine emphasise the
value of some forms of evidence over others, placing
particular emphasis upon the results of randomised
controlled trials.17 For example, the United States
Preventive Services Taskforce rates the value of
evidence from randomised controlled trials as “grade
I,” evidence from non-randomised trials as “grade II,”
and evidence from the opinions of respected
authorities as “grade III.”18
Ethical concerns
Randomised controlled trials have the potential to
prevent the propagation of worthless treatments and
confirm the value of effective treatments. They raise a
number of issues that cause ethical concern, including:
the selection of subjects, consent, randomisation, the
manner in which trials are stopped, and the continuing
care of subjects once the trials are complete.
“Therapeutic equipoise”
The administration of randomised controlled trials
requires doctors and patients to balance the require-
ments of several distinct roles
—
doctors may act simul-
taneously as physicians and research scientists, and
patients as invalids and research subjects. It has been
suggested that physicians’ moral responsibilities
towards their patients are inconsistent with any
recommendation that the patients should participate
in randomised controlled trials because of this conflict
of interest.19 20 However, it is held that doctors may rec-
ommend that their patients participate if they are in a
state of “therapeutic equipoise”
—
that is, there is genu-
ine doubt about the value of different interventions.21
Equipoise is not generally a problem in large clini-
cal trials designed to investigate treatments with only
moderate effect sizes. Indeed, a major value of
randomised controlled trials is that they allow identifi-
cation of moderate benefits that would otherwise be
obscured by bias and random effects.22 However, equi-
poise may not be achievable when interventions have
very great benefits, or major risks. These interventions
PETER BROWN
Education and debate
1152 BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

need to be investigated in other ways, such as by
reporting clinical observations or through the use of
historical controls. Researcher’s choice of experimental
protocols may therefore be limited by ethical concerns
and the gathering of “grade I” or “grade II” evidence
may be prohibited by ethical requirements.
Using evidence
Individual care and resource allocation
Clinical trials seem the best basis for clinical decision
making. However, compared with other topics in
evidence based medicine, the techniques for accurate
application of trial results have received scant
attention. There is a widely held view that the correct
approach is through a comparison of the trial subjects
and the population to which the results are to be
applied.23 This is not necessarily so, as the overall
results of a trial represent an average effect, and even
within the trial population some will experience a
greater than average improvement in outcomes, while
others may suffer harm.24 25 Consequently, although
crude applications of trial results may on average do
more good than harm, they may none the less
disadvantage some patients.
Systematic bias
Governments and health funds find the notion of allo-
cating health resources on the basis of evidence attrac-
tive.26 Eddy has suggested that healthcare funds should
be required to cover interventions only if there is suffi-
cient evidence that they can be expected to produce
their intended effects.27 The Australian health minister,
Dr Michael Wooldridge, who is a strong supporter of
evidence based medicine, has adopted a similar
position, stating “[we will] pay only for those
operations, drugs and treatments that according to
available evidence are proved to work.”26
Given the complexities of the issues surrounding
resource allocation, the drive to seek certainty and sim-
plicity at the policy level is understandable. However,
the large quantities of trial data required to meet the
standards of evidence based medicine are available for
relatively few interventions. Evidence based medicine
may therefore introduce a systematic bias, resulting in
allocation of resources to those treatments for which
there is rigorous evidence of effectiveness, or towards
those for which there are funds available to show effec-
tiveness (such as new pharmaceutical agents). This may
be at the expense of other areas where rigorous evi-
dence does not currently exist or is not attainable (such
as palliative care services). Allocating resources on the
basis of evidence may therefore involve implicit value
judgments, and it may only be a short step from the
notion that a therapy is “without substantial evidence”
to it being thought to be “without substantial value.”8
Individual versus population health
Evidence based medicine, as described above, concen-
trates upon the efficacy of individual treatments.
Physicians must not only address the needs of individual
patients, but should also be concerned with issues of effi-
ciency and population health.28 Proponents of evidence
based medicine argue that these issues can be resolved
by the use of “evidence based purchasing.” However,
decisions reached rationally at the population level will
at times conflict with those made in the interests of the
individual. Evidence based medicine does not provide a
means to settle such conflicts. Even attempts to replace
evidence based medicine with other quantitative
methods such as “decision-analysis based medical
decision-making” seem unlikely to remove from
medicine the need for reasoning that is based on value.29
Simplistic solutions
According to Williams, “there is great pressure for
research into techniques to make larger ranges of
social value commensurable. Some of the effort should
rather be devoted to learning
—
or learning again
—
how
to think intelligently about conflicts of values which are
incommensurable.”9This is particularly the case where
it comes to making decisions about allocation of health
resources. Those charged with making these decisions
are seeking simplistic solutions to inherently complex
problems
—
the danger is that through evidence based
medicine we will supply them.
Funding: No additional funding.
Conflict of interest: None.
1 Sackett DL, Rosenberg WMC, Gray JAM, Harnes RB, Richardson WS.
Evidence based medicine: what it is and what it isn’t. BMJ 1996;312:71-2.
2 Chalmers I, Dickersin K, Chalmers TC. Getting to grips with Archie
Cochrane’s agenda BMJ 1992;305:786-8.
3 Rosenberg W, Donald A. Evidence based medicine: an approach to clini-
cal problem-solving. BMJ 1995;312:1122-6.
4 Henr y D. Economic analysis as an aid to subsidisation decisions. The
development of Australian guidelines for pharmaceuticals. Pharmaco-
Economics 1992;1:54-67.
5 Bastian H. The power of sharing knowledge. Consumer participation in the
Cochrane Collaboration. Oxford: UK Cochrane Centre, 1994.
6 Hope T. Evidence-based medicine and ethics. J Med Ethics 1995;21:259-60.
7 Guyatt GH, Sackett DL, Cook DJ for the Evidence-Based Medicine Work-
ing Group. Users’ guides to the medical literatures. JAMA 1994;271:59-63.
8 Evidence-Based Care Resource Group. Evidence-based care. 1. Setting
priorities: how important is this problem? Can Med Assoc J 1994;150:
1249-54.
9 Williams B. Morality. Cambridge: Cambridge University Press, 1972.
10 Chalmers I. What do I want from health researchers when I am a patient?
BMJ 1995;310:1315-8.
11 Oliver SR. How can health service users contribute to the NHS R and D
program? BMJ 1995;310:1318-20.
12 Berger RL. Nazi science
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the Dachau hypothermia experiments. N Engl J
Med 1990;322:1435-40.
13 Samei E, Kearfott KJ. A limited bibliography of the federal government-
funded human radiation experiments. Health Physics 1995;69:885-91.
14 Angel M. The Nazi hypothermia experiments and unethical research
today. N Engl J Med 1990;322:1462-4.
15 Smith R. Informed consent: the intricacies. BMJ 1997;314:1059-60.
16 Gruppo Ialiano per lo Studio della Sopravvivenza nell Infarto Miocardio.
GISSI-2: a factorial randomised trial of alteplase versus streptokinase and
heparin versus no heparin among 12,490 patients with acute myocardial
infarction. Lancet 1990;336:65-71.
17 Mulrow CD. Rationale for systematic reviews. BMJ 1994;309:597-9.
18 US Preventive Services Taskforce. Guide to clinical preventive services. 2nd
ed. Baltimore: Williams and Wilkins, 1995:862.
19 Hellman S, Hellman DS. Of mice but not men. Problems of the
randomised clinical trial. N Engl J Med 1991;324:1585-9.
20 Howson C, Urbach P. Scientific reasoning—a Bayesian approach. 2nd ed.
Chicago: Open Court, 1993.
21 Shimm DS, Spece RG. Ethical issues and clinical trials. Drugs
1993;46:579-84.
22 Yusof S, Collins R, Peto R. Why do we need some large, simple
randomised trials? Stat Med 1984;3:409-20.
23 Walsh JT, Gray D, Keating NA, Cowley AJ,Hampton JR. ACE for whom?
Implications for clinical practice of post-infarct trials. Br Heart J
1995:73:470-4.
24 Hlakty MA, Califf RM, Harrell FE Jr, Lee KL, Mark DB, Muhlbaier LH, et
al. Clinical judgement and therapeutic decision making. J Am Coll Cardiol
1990;15:1-14.
25 Glasziou PP, Irwig LM. An evidence based approach to individualising
treatment. BMJ 1995;311:1356-9.
26 Downey M. Trust me I’m a doctor. Sydney Morning Herald. 10 May 1997:1.
27 Eddy DK. Benefit language; criteria that will improve quality while reduc-
ing costs. JAMA 1996;275:650-7.
28 Maynard A. Evidence-based medicine: an incomplete method for
informing treatment choices. Lancet 1997;349:126-8.
29 Dowie J. “Evidence-based”, “cost-effective”, and “preference-driven”
medicine: decision analysis based medical decision making is the
pre-requisite. J Health Serv Res Policy 1996;1:104-113.
(Accepted 28 August 1997)
Education and debate
1153BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

Framework for analysing risk and safety in clinical
medicine
Charles Vincent, Sally Taylor-Adams, Nicola Stanhope
Adverse events are incidents in which a patient is unin-
tentionally harmed by medical treatment. Awareness
while under anaesthetic, deaths during surgery, and
missed cases of meningitis are tragic for both patients
and staff, and may lead to complaints or litigation.
Investigations usually focus on the actions of individual
doctors and seldom examine the background to these
events.
In a recent case of a patient whose bowel was perfo-
rated during surgery, examination of the medical
records led to criticism of the surgeon. Only later did it
emerge that the operation had been carried out in near
darkness because of several equipment and power prob-
lems. Adverse events usually originate in a variety of sys-
temic features operating at different levels
—
the task, the
team, the work environment, and the organisation. We
present a framework that aims to encompass the many
factors influencing clinical practice. It can be used to
guide the investigation of incidents, to generate ways of
assessing risk, and to focus research on the causes and
prevention of adverse outcomes.
Adverse events
In spite of increased attention to quality, errors and
adverse outcomes are still frequent in clinical practice.1
The risk of iatrogenic injury to patients in acute hospi-
tals remains high, with studies reporting rates of
4-17%.2–4 A recent American observational study
found that 45% of patients experienced some medical
mismanagement and 17% suffered events that led to a
longer hospital stay or more serious problems.5
Even with the advent of clinical audit, comparatively
few studies focus directly on the causes of adverse events.
Notable exceptions include the confidential inquiries
into maternal and perioperative deaths.67Leape argues
that more attention must be paid to psychological and
human factors in the nature, mechanisms, and causes of
error
—
particularly the fact that liability to error is
strongly affected by the context and conditions of work.1
Critical incident and organisational analyses of indi-
vidual cases have illustrated the complexity of the chain
of events that may lead to an adverse outcome.8–10 The
root causes may lie in several interlocking factors, such
as the use of locums, communication and supervision
problems, excessive workload, and training deficiencies.
Some fundamental features of a unit, such as poor com-
munication within a team, may be implicated in a range
of adverse clinical events.4
Analysis of accidents
“Human factors” approach
Analyses of accidents in medicine and elsewhere have
led to a much broader understanding of accident cau-
sation, with less focus on the individual who makes an
error and more on pre-existing organisational factors
that provide the conditions in which errors occur.11 12
This “human factors” approach, as it is called, is a
hybrid discipline that focuses on the human compo-
nent within complex sociotechnical systems. The
assessment of accidents in large scale systems has
acquired a high profile in industry, after such disasters
as the fire at King’s Cross underground station,
Chernobyl, and the Piper Alpha platform. Reason’s
The original model for accident assessment was developed for use in
complex industrial settings such as offshore drilling platforms
JOHN FERRO SIMS/IMPACT
Summary points
Adverse events in which patients are harmed by
medical treatment are common
Investigations which consider only actions or
omissions of individual clinicians are incomplete
and misleading
Psychological research shows that liability to error
is strongly affected by adverse conditions of work
These conditions include high workload,
inadequate supervision, poor communication,
rapid change within an organisation
A framework of risk factors allows a systematic
approach to safety and error reduction
Education and debate
Clinical Risk Unit,
Department of
Psychology,
University College
London, London
WC1E 6BT
Charles Vincent,
senior lecturer
Sally Taylor-Adams,
HHRI lecturer in
clinical risk
Nicola Stanhope,
research fellow
Correspondence to:
Dr Vincent
c.vincent@ucl.ac.uk
BMJ 1998;316:1154–7
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model of organisational accidents was originally devel-
oped for use in these complex industrial systems, and
has now been adapted for medical settings.11–14 The
method is essentially to examine the chain of events
that leads to an accident or adverse outcome, consider
the actions of those involved, and then, crucially, look
further back at the conditions in which staff were work-
ing and the organisational context in which the
incident occurred.
Active failures
Human decisions and actions play a major part in
nearly all accidents. They contribute in two main
ways
—
through active failures and latent failures.11
Active failures are unsafe acts or omissions committed
by those whose actions can have immediate adverse
consequences
—
pilots, air traffic controllers, anaesthet-
ists, surgeons, nurses, etc. The term active failures
includes:
xAction slips or failures, such as picking up the
wrong syringe
xCognitive failures, such as memory lapses and mis-
takes through ignorance or misreading a situation
x“Violations”
—
deviations from safe operating prac-
tices, procedures, or standards.
In contrast with errors, which arise primarily from
informational problems (forgetting, inattention, etc),
violations are more often associated with motivational
problems such as low morale, poor examples from
senior staff, and inadequate management generally.
In industry, and to a lesser extent in medicine,
defences exist to guard against human error and aid
recovery from potential problems. In industry, this
might be a failsafe device to shut down a reactor, in
medicine the warning sound of a monitor alerting an
anaesthetist to falling blood pressure. A full account of
these distinctions can be found in Reason’s book.11
Latent failures
Latent failures stem from fallible decisions, often taken
by people not directly involved in the workplace. In
medicine, latent failures would be primarily the
responsibility of management and of senior clinicians
at those times when they are taking decisions on the
organisation of their unit. Latent failures provide the
conditions in which unsafe acts occur; these work con-
ditions include:
xHeavy workloads
xInadequate knowledge or experience
xInadequate supervision
xA stressful environment
xRapid change within an organisation
xIncompatible goals (for example, conflict between
finance and clinical need)
xInadequate systems of communication
xInadequate maintenance of equipment and
buildings.
These are the factors that influence staff performance
and may precipitate errors and affect patient outcomes.
Anatomy of an accident
The figure shows the anatomy of an organisational acci-
dent according to this scheme. The accident sequence
begins with the negative consequences of management
decisions and organisational processes. The latent
failures thus created are transmitted along various
organisational and departmental pathways to the work-
place (operating theatre, ward) where they create the
local conditions that precipitate errors and violations.
The model presents the people who are directly
involved as the inheritors rather than the instigators of
an accident sequence, though this does not necessarily
imply that blame is simply shifted “upstream.”12
Organisational influences in medicine
In the above analysis a hierarchy of factors is involved in
the cause, and therefore in the analysis, of adverse
outcomes. To understand and prevent adverse events in
medicine, it is necessary to delineate the conditions of
work and associated latent failures. The oil, chemical,
and nuclear industries have developed tools to analyse
systematically organisational safety performance.15–17
Typically, there is a general framework with components
specific to that industry. The background conditions that
predispose to risk and unsafe practice are directly and
routinely monitored to assess not the health of a patient
but the health of a unit
—
the unit’s vital signs.While there
is certainly interest in organisational influences on
medical practice, there is no current framework in medi-
cine that attempts to integrate the whole hierarchy of
factors and their components.
Framework for medicine
The framework described below was initially derived
from Reason’s model of organisational accidents.11 12
However, we also reviewed the major frameworks in
use in the human factors field, such as the socio-
technical pyramid of Hurst and Ratcliffe,16 to ensure
that all factors of potential relevance to medicine
were included.15 17 18 Components for the major factors
(see box) were primarily derived from medical publi-
cations on error, adverse outcomes, and risk
management.1 8–10 13 19 20 The final framework incor-
porates many features that are of particular
importance in medicine, such as patient characteristics,
team working, and medicine’s unique regulatory and
economic context. The box shows the basic framework,
and sets out the hierarchy of factors that may influence
clinical practice.
Patients and staff as individuals
Clearly the condition from which the patient suffers is
the most powerful direct predictor of clinical outcome.
However, it has a further importance in this context in
that adverse events are more likely when the patient is
already seriously ill.321 Other factors, such as the
patient’s language and personality, may influence
communication with staff and, in turn, the likelihood of
Latent
failures
Management
decision
Organisational
processes
Conditions of
work (current)
Background
factors
• workload
• supervision
• communication
• equipment
• knowledge/
ability
Active
failures
Barriers/
defences Accident
Unsafe acts
• omissions
• action slips/
failures
• cognitive failures
(memory lapses
and mistakes)
• violations
Organisational accident model based on work by Reason12
Education and debate
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an adverse event. A number of staff factors, such as per-
sonality, experience, and training, may be influential. The
confidence and assurance of staff may be of considerable
importance, especially where junior staff are concerned;
risk is attached to being nervous and unsure, and also to
being overconfident and arrogantly self assured.
Team, organisation, and community
Each staff member is part of a team, both within their
unit and in the wider organisation of the hospital or
community unit. The way individuals practise and their
impact on the patient are constrained and influenced by
other members of the team and the way the team mem-
bers communicate with, support, and supervise each
other. The team is affected in turn by management
actions and by decisions made at a higher level in the
organisation. The team’s environment is partly control-
led by senior clinicians and managers, although they too
are constrained by a variety of circumstances. “Work
environment” in our scheme includes such factors as
staffing structures and levels, availability and main-
tenance of equipment, and education and training. The
organisation, in turn, is affected by the external environ-
ment, including the commercial environment, financial
constraints, external regulatory bodies, and the broader
economic and political climate.
Specification of components
Each level of analysis can be expanded to provide a
more detailed specification of the components of indi-
vidual major factors. As an example (box), we have
expanded the team level to show some of the
characteristics that both published reports and
analyses of individual events have found to be
important in a team’s overall performance.22-24
Applications and development
The framework presented has a number of different
uses with regard to the analysis of individual clinical
events, the design and validation of risk assessment
instruments, and in the design of studies to examine
the relation of the many factors affecting clinical
practice to the actual outcomes of patient care.
Formalising and extending analysis
Firstly, the framework enables researchers and risk man-
agers to formalise and extend their analysis of adverse
outcomes, or indeed of any incident that gives rise to
concern. Instead of focusing simply on the actions of the
staff involved and on patient characteristics, we can
examine the whole gamut of possible influences. While
this approach has already been applied productively by
using interviews and checklists, much work still needs to
be done to standardise procedures of data gathering and
analysis and to validate the approach.91419 The
framework can be used to guide this process.
Systematic approach
Secondly, the framework enables a systematic and con-
ceptually driven approach to the development of
Factors that influence clinical practice
Institutional context
Economic and regulatory context
National Health Service Executive
Clinical negligence scheme for trusts
Organisational and management factors
Financial resources and constraints
Organisational structure
Policy standards and goals
Safety culture and priorities
Work environment
Staffing levels and skills mix
Workload and shift patterns
Design, availability, and maintenance of equipment
Administrative and managerial support
Team factors
Verbal communication
Written communication
Supervision and seeking help
Team structure
Individual (staff) factors
Knowledge and skills
Motivation
Physical and mental health
Task factors
Task design and clarity of structure
Availability and use of protocols
Availability and accuracy of test results
Patient characteristics
Condition (complexity and seriousness)
Language and communication
Personality and social factors
Training can reduce adverse events
ULRIKE PREUSS
Team factors and their components
Verbal communication
Communication between junior and senior staff
Communication between professions
Communication between specialties and
departments
Adequate handover
Written communication
Legibility and signatures of records
Adequate management plan
Availability of records
Quality of referral and discharge
Supervision and seeking help
Availability and responsiveness of senior staff
Clear definitions of responsibility
Willingness of junior staff to seek help
Structure of team
Skills mix of team
Balance of senior and junior staff
Balance of medical and nursing staff
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organisational risk assessment instruments. Large scale
organisational audit instruments cover many of the
managerial areas of concern to us, but with
comparatively little attention to the daily realities of
clinical work and the lower level (but equally
important) patient, task, staff, and team characteristics.
They can also become increasingly unwieldy, as they
seek to cover every managerial process without trying
to discern which factors are most important at a clini-
cal level. The framework allows us to focus on key
topics and also to consider what the most effective
method of assessment might be.
The most important and most difficult problem is
assessing the influence of these factors on patient out-
come in empirical studies. Research on these broader
factors on clinical practice does not exist, although
several authors have pointed to the importance of
systemic factors in organisational change.25 26 The
extent, for instance, to which team performance and
characteristics predict clinical outcomes has seldom
been examined in formal studies, though team factors
have been strongly implicated in studies of aviation
safety and in some preliminary studies in medicine.24 27
Error reduction strategies
The ultimate aim of even the most academic and theo-
retical approach is to help clinicians and managers to
improve safety and the overall quality of care. Leape
emphasised that safer practice can only come from
acknowledging the potential for error and building in
error reduction strategies at every stage of clinical
practice.1The framework enables the examination of
the various influences on clinical practice at each stage,
which in turn points to interventions and error reduc-
tion strategies of appropriate kinds. One reason for the
limited impact of many quality and safety initiatives is
that they rely on only one level of intervention
—
for
example, staff training or tightening protocols
—
and
give insufficient attention to other factors that
influence clinical practice.
Safety needs to be addressed on the basis of a
broad assessment of a system’s health. Interventions
may need to be targeted at several points in the hierar-
chy, an approach already followed in many industrial
settings. Taking such a broad approach to the
assessment and management of risk and the improve-
ment of quality may seem difficult, even Utopian, but
may be necessary if the level of iatrogenic injury is ever
to fall below 4%.
We thank Jane Carthey, the late Anthony Hopkins, and Jonathan
Secker-Walker for comments on an earlier draft of this paper.
Funding: The Clinical Risk Unit is funded by North Thames
NHS Executive.
Conflict of interest: None.
1 Leape LL. Error in medicine. JAMA 1994;272:1851-7.
2 Mills DH. Clinical risk management: experiences from the USA. In:
Vincent CA, ed. Clinical risk management. London: BMJ Publications,
1995:3-17.
3 Brennan TA, Leape LL, Laird NM, Hebart L, Loralio AR, Lawthers AG,
et al. Incidence of adverse events and negligence in hospitalized patients.
N Engl J Med 1991;324:370-6.
4 Vincent CA. Risk, safety and the dark side of quality. BMJ 1997;314:
1775-6.
5 Andrews LB, Stocking C, Krizek T, Gottlieb L, Krizek C, Vargish T, et al.
An alternative strategy for studying adverse events in medical care. Lancet
1997;349:309-13.
6 Buck N, Devlin HB, Lunn JN. Confidential enquiry into perioperative deaths.
London: Nuffield Provincial Hospitals Trust, 1987.
7 Department of Health. Report on confidential enquiries into maternal
deaths in England and Wales.London: HMSO, 1994.
8 Cooper JB, Newbower RS, Kitz RJ. An analysis of major errors and
equipment failures in anesthesia management considerations for
prevention and detection. Anesthesiology 1984;60:34-42.
9 Cook RI, Woods DD. Operating at the sharp end: the complexity of
human error. In: Bogner MS, ed. Human er ror in medicine. Hillsdale, NJ:
Erlbaum, 1994:255-310.
10 Vincent CA, Bark P. Accident investigation:discovering why things go
wrong. In: Vincent CA, ed. Clinical risk management. London: BMJ Publi-
cations, 1995:391-410.
11 Reason JT. Human error. New York: Cambridge University Press, 1990.
12 Reason JT.Under standing adverse events: human factors. In: Vincent CA,
ed. Clinical risk management. London: BMJ Publications, 1995:31-54.
13 Bogner MS, ed. Human error in medicine .Hillsdale, NJ: Lawrence Erlbaum,
1994.
14 Stanhope N, Vincent CA, Adams S, O’Connor AM, Beard RW. Applying
human factors methods to clinical risk management in obstetrics. Br J
Obstet Gynaecol 1997;104:1225-32.
15 Wagenaar J, Groeneweg J, Hudson PTW, Reason JT. Safety in the oil
industry. Ergonomics 1994;37:1999-2013.
16 Hurst NW, Radcliffe K. Development and application of a structured audit
technique for the assessment of safety management systems (STATAS). Hazards
XII. European advances in process safety. Rugby: Institute of Chemical Engi-
neers, 1994.
17 Johnson WG. MORT: safety assurance systems. Chicago: National Safety
Council of America, 1980.
18 Moray N. Error reduction as a systems problem. In: Bogner MS, ed.
Human error in medicine. Hillsdale, NJ: Lawrence Erlbaum, 1994:67-92.
19 Eagle CJ, Davies JM, Reason J. Accident analysis of large-scale
technological disasters applied to an anaesthetic complication. Can J
Anaes 1992;39:118-22.
20 Vincent CA, Ennis M, Audley RJ, eds. Medical accidents . Oxford: Oxford
University Press, 1993.
21 Giraud T, Dhainaut J, Vaxelaire J, Joseph T, Jourrais D, Bleichner G, et al.
Iatrogenic complications in adult intensive care units: a prospective two-
centre study. Critical Care Med 1993;21:40-51.
22 Guzzo RA, Dickson MW. Teams in organisations: recent research on per-
formance and effectiveness. Ann Rev Psychol 1996;47:307-38.
23 Green HW.Human error on the flight deck. Philos Trans R Soc Lond Biol
Sci 1990;327:503-12.
24 Helmreich RL, Schaefer H. Team performance in the operating room. In:
Bogner MS, ed. Human error in medicine. Hillsdale, NJ: Lawrence Erlbaum,
1994:225-54.
25 Lagasse RS, Steinberg ES, Katz RI, Saubermann AJ. Defining quality of
perioperative care by statistical process control of adverse outcomes.
Anesthesiology 1995;82:1181-8.
26 Berwick DM. A primer on leading the improvement of systems. BMJ
1996;312:619-22.
27 Driscoll PA, Vincent CA. Organizing an efficient trauma team. Injur y
1992;23:107-10.
(Accepted 31 October 1997)
One hundred years ago
Puffin Island biological station
The days have long gone by when the accomplished naturalist
was usually also a physician, yet the majority of medical
practitioners still take a general interest in zoology and botany,
and will be glad to have their attention called to the modest little
report for 1896 and 1897 of the Puffin Island Committee for
investigating the fauna and flora of the coast of North Wales, and
for promoting the Sea Fisheries. The report, which is edited by Dr
Philip J White, gives an account of the useful work which is being
carried on with very slender resources by the writer and his
friends. The greater part of the papers published in it deal with
botanical subjects, but there are some notes on the Welsh fishery
exhibits at the Imperial Institute, and a very interesting record of
the excavations made by Mr Hughes in Ynys Seiriol (Puffin
Island), while Sir William Turner describes a skeleton discovered
there, which may perhaps be none other than that of St Seiriol
himself. (BMJ 1898;ii:742)
Education and debate
1157BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

Reducing the risk of nosocomial HIV infection in British
health workers working overseas: role of post-exposure
prophylaxis
Charles F Gilks, David Wilkinson
Nosocomial HIV transmission is a particular worry for
many doctors, medical students, and nurses who seek
work experience in low income countries. Firstly, the
prevalence of HIV infection among the patients they
care for in poor countries is high. Secondly, these
health workers are often relatively inexperienced
—
their technical skills may not be well practised and
hence they are likely to be exposed to blood and other
body fluids. Thirdly, many developing countries with a
high prevalence of HIV lack the resources to
implement universal precautions adequately. Finally,
poor or inadequate equipment and facilities are more
often encountered overseas and can increase the risks
of exposure. These occupational risks are clearly addi-
tional to the risks from unprotected sex, for which
separate preventive measures apply.
Although the risk of infection per exposure may be
low,the cumulative risk with repeat incidents increases
and seroconversion does occur.1Devastating personal
and professional consequences may then ensue, as
recently described by Sandy Logie in the BMJ.2These
issues, always a concern but rarely discussed openly, are
now to the fore because effective prophylactic
treatment after exposure to HIV is available.3This is
now the standard of care in the United Kingdom but is
rarely recommended or available in underdeveloped
countries.4This raises several important issues for
those who go overseas to work, as well as for those who
employ them or are their sponsors or educators.
Example of the problem
We reviewed nosocomial HIV exposure at a rural
district hospital in southern Africa. In this hospital,
25% of patients attending for antenatal care were posi-
tive for HIV. Most medical staff are relatively junior
doctors from Europe who spend a year or more doing
general medical duties, including surgery and obstet-
rics, that regularly expose them to blood and other
body fluids. Few have gained appropriate technical
skills before leaving home, and training while working
overseas generally consists of practical demonstration
by peers.
In a recent period of 10 months, five out of eight
doctors experienced a needlestick injury while treating
a patient infected with HIV. This is equivalent to 0.75
exposures per doctor per year. All incidents were con-
sidered severe as each was percutaneous, involved a
bloody needle, and drew the health worker’s own
blood. Three doctors were exposed while using faulty
or incorrect equipment for an operation or resuscita-
tion. In two cases, inexperience contributed to the
exposures, which occurred during routine operative
procedures. All staff took post-exposure prophylaxis
and seroconversion did not occur in any.
Extent of the problem
This frequency of exposure is by no means unusual. A
group of Dutch doctors working in Africa reported an
annual average of five needlestick injuries.5In a
Zambian district hospital it was estimated that each
surgeon experienced three parenteral exposures each
year, and that the risk of acquiring HIV infection
through work was 1.5% over five years.6These may be
minimum estimates of risk
—
needlestick injuries and
other exposure to body fluids are under reported and
their frequency is higher among less experienced
practitioners.
How many British health professionals work in set-
tings where the prevalence of HIV is high, or for how
long, is unknown as no formal register is kept.
However, by way of example, Liverpool University
sends 40-50 medical and dental students a year
overseas for elective study. Each year approximately
120 doctors study for the diploma in tropical medicine
and hygiene and about 30-40 nurses attend either the
tropical medicine for nurses course or the certificate in
tropical community medicine and health at the
Liverpool School of Tropical Medicine. Most of these
nurses and doctors are European graduates who
subsequently work in developing countries. Doctors
and nurses are also recruited by non-governmental
organisations such as Oxfam, Médecins Sans Fron-
tières, Merlin, and Save the Children Fund. Finally, sev-
eral research bodies such as the Medical Research
Council and the Wellcome Trust support expatriate
clinical research teams in countries where the
prevalence of HIV is high.
From a conservative estimate of one HIV positive
needlestick injury per health worker per year in a high
Summary points
British health workers seeking work experience in
underdeveloped countries are at risk from
nosocomial transmission of HIV
Although the risk of infection per exposure may
be low,the cumulative risk with repeat incidents
increases and seroconversion does occur
Availability of effective post-exposure prophylaxis
raises important moral and legal issues for those
who go overseas to work and those who employ,
sponsor, or educate them
Policy guidelines on post-exposure prophylaxis
are urgently needed for employers and health
workers
Education and debate
Division of Tropical
Medicine, Liverpool
School of Tropical
Medicine, Liverpool
L3 5QA
Charles F Gilks,
senior lecturer
Centre for
Epidemiological
Research in
Southern Africa,
Medical Research
Council, Hlabisa,
South Africa
David Wilkinson,
specialist scientist
Correspondence to:
Dr Gilks
gilks@liverpool.ac.uk
BMJ 1998;316:1158–60
1158 BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

prevalence area, and a seroconversion risk of three per
1000, one in every 333 health workers would be
expected to acquire HIV infection each year through
their work.
Emerging issues
Zidovudine alone may reduce needlestick trans-
mission by 81%,3and triple therapy with antiretroviral
drugs may virtually eliminate the risk of seroconver-
sion. Several issues emerge from the availability of
effective prophylactic treatment after exposure to HIV.
Taking responsibility
Are organisations that recruit and employ, or second,
health workers under legal and moral obligations to
provide cover for occupational hazards such as needle-
stick injuries? What formal responsibilities do medical
schools have for students studying abroad during an
elective period? In Britain, anyone exposed to HIV in a
work setting would expect to have immediate access to
prophylaxis.
Cost of protection
If post-exposure prophylaxis is to be provided, who
pays for the drugs? A dose of 1000 mg zidovudine per
day for four weeks, a regimen shown to be effective,
costs £350.7Both Britain and the United States now
recommend four weeks of triple therapy for people
with high risk exposures (zidovudine (200 mg three
times daily), lamivudine (150 mg twice daily), and indi-
navir (800 mg three times daily)) at a cost of £456.478
Full courses of these drugs must be available, stored
appropriately, and renewed when expiry dates are
reached. Charities and non-governmental organisa-
tions, in particular, may be reluctant to take on what
could be appreciable extra costs of employment.
Dealing with incidents
Some system, such as an occupational health service, is
needed to deal with and report each incident. A base-
line serum sample should be stored for medicolegal
reasons, and emergency advice, counselling, HIV
testing, and drug prophylaxis should be accessible. An
appropriate system for offering voluntary counselling
and testing of the index case is also required. Because
of cost, these services are rarely available in poor coun-
tries. What then should be provided? Rapid HIV test
kits may be useful in some settings where colleagues
can be relied on to be supportive. But what should the
single handed practitioner working in relative isolation
do?
Equity and access
In those (most) developing countries where post-
exposure prophylaxis is not provided or available, and
where the non-governmental organisation or research
team has made provision for prophylaxis for expatriate
staff, what are the responsibilities to local colleagues?
Even if it has been decided to cover all project staff
(local and expatriate), there will always be a boundary
between those healthcare workers who have access to
prophylaxis and those who do not. Can this be dealt
with fairly without having to provide a full post-
exposure prophylaxis service for all healthcare workers
in the vicinity?
Developing policy
With little open discussion, few organisations have
committed themselves by producing written policy
guidelines. Informal arrangements are being widely
implemented, but their legal standing is unclear. Most
people working overseas have not been given the
opportunity to discuss frankly the risks of HIV and
consider their own position and possible options in the
light of what is available locally. For how long can such
an unsatisfactory situation continue?
Recommendations
Open discussion
Awareness of the risk of occupationally acquired HIV
infection must be openly discussed with each person
who is considering working overseas. Nosocomial
transmission of HIV is often perceived as a great
threat. Clearly that risk first needs to be put into
context. Occupationally acquired HIV infection is rela-
tively uncommon,1and health workers are more likely
to die in a road accident in developing countries9or to
acquire HIV from unprotected sexual intercourse.
Emphasis can be given to strategies such as better
adherence to universal precautions and infection con-
trol practices
—
as far as this is possible given local
conditions
—
and the acquisition of appropriate skills
before departure. Some people may then choose not
to visit or work in high risk settings, while others may
seek to ensure that they have acquired adequate skills
and proficiency before they go overseas.
Nosocomial transmission of HIV is often a worry for health
professionals seeking work experience in Third World countries
CRISPIN HUGHES/PANOS PICTURES
Education and debate
1159BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

Use of prophylaxis
The point must also be raised that if occupational
exposure does occur then the risk of seroconversion
can be minimised. The circumstances under which
post-exposure prophylaxis could or should be
provided overseas needs to be clarified,and the issue of
liability should be sorted out. When to use prophylaxis
and which regimen to recommend needs to be based
on the best available evidence, but cost, drug safety,
drug storage requirements, access, and use should also
be considered. Extending to expatriate staff working
overseas the guidelines on post-exposure prophylaxis
that are currently in place in Britain could raise aware-
ness among local health workers of the value of
prophylaxis. They could, in turn, lobby national
authorities and professional associations for post-
exposure prophylaxis to be made available to them.
If post-exposure prophylaxis is not provided by the
employer or is not available locally, one strategy would
be to purchase or to be given before travel a personal
supply of the drugs and to make arrangements for
regular renewal if this is feasible. It may also be prudent
to discuss what to do if seroconversion does occur.
Most people would want to return home in this
situation. Valid documentation of the incident is critical
in any claim for compensation.
Health professionals already working overseas
The position is more difficult for those already
overseas, especially if they have not had much
opportunity to discuss and consider the risks of noso-
comial HIV. We are aware of considerable anxiety
among some of the doctors and nurses we work with
overseas. In addition, both of us have had needlestick
injuries from HIV infected patients in Africa and have
had to consider many of these issues. Again, the
important thing is access to up to date and appropriate
information about local risks and circumstances, and
to be aware of the appropriate course of action to
adopt in the event of a needlestick injury. At a
minimum this should be discussed during home leave.
Need for guidelines
There is a clear need for realistic, usable guidelines.
The intention is not to disincline anyone from working
overseas but to promote wide ranging discussion about
the very real and constant problem of nosocomial
infection in developing countries where HIV preva-
lence is high. The hope is that all who work overseas
are aware and fully briefed about the risks involved and
that some form of consensus can be reached about
responses that will minimise the risk of HIV
seroconversion. Ideally, policy guidelines for both
employers and employees will be drawn up. If this
paper arouses enough interest and support, we will try
to organise the development of guidelines. In the
meantime, we will continue to offer ad hoc advice to
those who wish to work or are already working
overseas.
Funding: None.
Conflicts of interest: None.
1 Henderson DK, Fahey BJ, Willy M. Risk for occupational transmission of
HIV type 1 associated with clinical exposure: a prospective evaluation.
Ann Intern Med 1990;113:740-6.
2 Log ie S.“Coming out”
—
a personal dilemma. BMJ 1996;312:1679.
3 Cardo DM, Culver DH, Ciesielski CA, Srivastava PU, Marcus R, Abiteboul
D, et al. Case-control study of HIV seroconversion in health care worker s
after percutaneous exposure. N Engl J Med 1997;337:1485-90.
4 Depar tment of Health. Guidelines on post-exposure prophylaxisfor health care
workers occupationally exposed to HIV. London: Department of Health,
1997.
5 Veeken H, Verbeek J, Houweling H, Cobelens F. OccupationalHIV infec-
tion and health care workers in the tropics. Trop Doct 1991;21:28-31.
6 Consten ECJ, van Lanschot JB, Henny P, Tinnemans JGM, van der Meer
JTM. A prospective study on the risk of exposure to HIV during surgery
in Zambia. AIDS 1995;9:585-8.
7 Major advances in the treatment of HIV-1 infection. Drug Therapeutics
Bull 1997;35:25-9.
8 Centres for Disease Control and Prevention. Provisional public health
service recommendations for chemoprophylaxis after occupational
exposure to HIV. MMWR 1996;45:468-72.
9 Odero W, Garner P,Zwi A. Road traffic injuries in developing countries: a
comprehensive review of epidemiological studies. Trop Med Int Health
1997;2:445-60.
(Accepted 16 January 1998)
Coping with loss
Blindness and loss of other sensory and cognitive functions
Roy G Fitzgerald, Colin Murray Parkes
Sensory and cognitive functions enable us to orient
ourselves in the world; they make us aware of dangers
and rewards; they mediate many sources of pleasure
and of pain; and they are the means by which we
receive messages from others. Anything that seriously
impairs sensory or cognitive function is bound to have
profound psychological effects, not only on the person
who is affected but also on family, friends, workmates,
and caregivers.
Sensory and cognitive losses disable the doctor as
well as the patient. When we attempt to communicate
with deaf people, their deafness renders us dumb.
Blindness in our patients deprives us of the ability to
use non-verbal communication. An aphasic person
effectively teaches us what it feels like to be deaf. The
Summary points
Sensory and cognitive defects disable all who
come into contact with them, including
doctors
Fear, frustration, and grief are natural reactions in
patients and their carers
Denial of loss commonly impairs rehabilitation
Anticipatory guidance and support after the loss
can reduce long term problems
Education and debate
This is the fifth
in a series of
10 articles
dealing with the
different types
of loss that
doctors will
meet in their
practice
Series editors: Colin
Murray Parkes and
Andrew Markus
continued over
BMJ 1998;316:1160–3
1160 BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

brain damaged patient makes us feel stupid. We
experience the same frustration as they do and some of
the same pain.
Problems with communication
The situation is particularly hard when the circum-
stances demand sensitive and empathic communica-
tion, for it is this very subtlety that is most difficult to
achieve. The fact that, unlike the patient, we can escape
from the frustration
—
by escaping from the patient
—
encourages us to do just that. We do our duty, inform
them of the help that is available, then leave it all to
them. We give up trying to communicate, avoid
interaction, and inadvertently indicate that we wish
they would stop troubling us. Consequently, it is
common for patients with communication defects to
feel that they have become a burden to all who meet
them. They may be tempted to give up trying to cope
with a world that feels unappealing and rejecting.
Yet communication is always possible, and the
professional who is willing to take the time and make
the effort to communicate with people in this situation
can achieve a great deal. Most patients are reassured to
know that we understand, even if there is no way in
which we can change their situation.
We shall take blindness as our prime example of
sensory loss and rely on the research of others to relate
this to other types of sensory and cognitive loss. Our
examination of the problems of adjusting to blindness
stems from a study by one of us of 66 adult Londoners
aged 21-65 years who were followed up for an average
of five years after being registered as blind.1–5 This
research was supplemented by clinical studies and
consultation with service providers for the blind,
mainly in the United States, over a period of 25 years.
There are, of course, important differences between
the reactions to sensory losses and to cognitive losses,
mainly because it requires cognition for a person to
understand that a loss has taken place and what this
implies. For this reason the two types of loss will be
considered separately.
Sensory losses
Onset
Most blind people are not born blind, they become
blind.1This means that, having learned to rely on their
sight in order to recognise and relate to the world, they
must now radically revise their basic assumptions
about that world. It is not surprising that blindness is
usually an overwhelming personal and family catastro-
phe affecting the patient’s mobility, work, personal
relationships, and much else.
Although loss of sight is sometimes very gradual,
three fifths of the subjects in the London study had less
than a year between onset of symptoms and loss of
useful vision, with 35% becoming blind in less than two
weeks. Loss of hearing tends to be very gradual, and
aphasias are more often sudden in onset. Those who
experience a gradual onset have more time to prepare
themselves for the changes that are occurring, but the
changes are easier to ignore.
Reaction to sensory losses
The box above shows the approximate sequence of
reactions to loss of sight and the frequency with which
the phenomena were reported when blindness was
established. They resemble the reactions to bereave-
ment and other losses.
Deafness evokes less sympathy than blindness. As
the disability becomes established, deaf people go
through the same succession of stages of reactions.67
People with aphasia lose their jobs and other skills;
they face social isolation similar to that of the deaf per-
son, and their roles within the family undergo
profound changes.
Long term adjustment
Progress towards recovery occurred in less than half of
the blind subjects studied. Anxiety and depression per-
sisted in half the subjects, and substantial minorities
had a lasting decline in self esteem, sleep disturbance,
and social withdrawal. A quarter reported excessive
weight gain and a third reported episodes of irritability
and anger. Persisting pain in the eyes and headache
were common and were often thought to be of psycho-
genic origin. Several young married men had lasting
sexual problems, and people who increased their con-
sumption of alcohol or tobacco seldom returned to
previous levels.
Comparable difficulties have been reported after
other types of sensory loss. In deaf people, psychiatric
illness was reported in 19% and high levels of
emotional disturbance in another 20%.8Much of this
was associated with depression. Depression and
feelings of worthlessness are also common in people
with aphasia and sometimes amount to a “catastrophic
reaction” when something happens that brings home
the magnitude of the loss.9
Reactions to loss of sight
•Shock or disbelief (“I didn’t believe it was happening
to me” or “It’s not permanent”)
•Pining for what is lost
—
for example, preoccupation
with the visual past (83%), longing to see those things
that cannot now be seen (97%), high anxiety and
episodes of tearfulness (70%); pangs of grief for the
visual world triggered by anything that forced the
patient to confront the reality of blindness. These
experiences were intensely frustrating and evoked
feelings of irritability and anger
•Depression in 85% of blind subjects continued after
the pining and accompanying tearfulness had declined
•Resolution often followed one or more turning
points associated with increased self esteem and self
sufficient acts such as preparing meals for oneself. The
depression lifted and crying and social withdrawal
diminished
Sensory and cognitive losses disable the doctor as well
as the patient
Education and debate
Thomas Jefferson
University,
Philadelphia,
PA 19107, USA
Roy G Fitzgerald,
associate clinical
professor of psychiatry
St Christopher’s
Hospice, London
SE26 6DZ
Colin Murray
Parkes,
consultant psychiatrist
Correspondence to:
Dr Fitzgerald
1161BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

Determinants of poor outcome
A major correlate of delayed recovery from loss of vision
was persistent denial of blindness: 53% of patients clung
to an unrealistic hope of recovery and 58% refused to
learn the skills necessary for adjusting to life as a blind
person. A third had been to faith healers in the hope of
recovering their sight. All too often unrealistic hopes
had been kept alive by doctors who, out of a reluctance
to upset the patient, pretended that there was still hope
of recovery, often by arranging repeated and unneces-
sary examinations. Denial of blindness correlated with
depression and the feeling of helplessness which regu-
larly accompanies depression. It further undermined
motivation and deterred efforts towards rehabilitation.
Similarly, deaf people commonly take a long time
to accept that there is anything wrong with their hear-
ing, and some never do.This interferes with attempts to
persuade them to learn sign language or the other
skills that are needed if they are to function effectively.
People with a total loss of hearing often persist in
attempts to use hearing aids long after these are of any
value and may engage in a useless and expensive
search for more effective models.
Persisting physical ill health makes additional
demands on people at a time when they are already at
full stretch. Patients (particularly old people) find it
hard to learn how to cope with sensory losses when
they already have other health problems.
Preparation for and management of sensory losses
It is usually possible to prepare people for the likelihood
that they will lose their sight or hearing, and this will
reduce the shock when it happens. In the long run,
patients and their families appreciate the doctor being
frank about the poor prognosis and the finality of the
loss, if that is the case. It is also important for the doctor
to be quite clear about the futility of seeking multiple
opinions and undertaking wasteful treatments.
People need permission to grieve. They need
recognition that this is a normal, natural reaction to
loss and not a sign that they are “breaking down.”
Members of the family also need opportunities to
share their grief as the impact of the patient’s condition
on their own lives becomes apparent. They need to be
involved in the rehabilitation process from the start so
that they become part of the rehabilitation team as well
as recipients of its care. Failure to do this may bring
about the situation in which an anxious wife or
husband is undermining the team’s effort to help the
patient to become autonomous.
It is important for a member of the primary care
team to be familiar with the network of rehabilitation
services that are available and to ensure that the patient
makes full use of these. If, as is often the case, agencies
are slow to act, waiting lists are long, and paperwork
burdensome, the patient and family must be prepared
for this and supported through the waiting.
Of particular value are opportunities to meet with
veterans, other blind or deaf people who have achieved
a reasonable level of adjustment. Many organisations for
the blind, for example, have blind or partially sighted
people on their staff, and there are mutual help groups
run by and for blind people. In the United Kingdom the
main organisation for the blind is the Royal National
Institute for the Blind (RNIB); in the United States, the
National Foundation for the Blind has chapters in each
state. Group counselling has been shown to be effective
and more of these groups should be established.10
If, despite all our efforts, a person fails to meet our
expectations of recovery from depression and to
achieve a reasonable level of rehabilitation, we should
not hesitate to refer them to specialist services.
Cognitive losses
To communicate it is necessary to organise one’s
thoughts in a coherent way. Many of the problems of
communication discussed above also exist when there
is disease of or damage to the cerebral cortex, but some
additional factors must be considered.
To grieve it is necessary to remember what you have
lost. This simple fact explains the relative lack of grief
that is found in patients with a severe dementia. Less
severe forms of brain damage may, however, give rise to
great distress. As long as people have sufficient mental
function to realise what they have lost they can be
expected to grieve; their grief, however, is likely to take
different forms from that of people with intact cognition.
Rapid onset
Cognitive losses of rapid onset (acute confusional
states) cause much more distress than the insidious
onset of dementia. The experience of disorientation
can be very frightening, particularly in an unfamiliar
environment. Anxiety itself impairs concentration and
judgment, aggravating the symptoms that caused it in
the first place. Well meaning nurses and doctors may
be seen as strangers who are assaulting the person, and
patients may hit out to defend themselves.The thought
that we may be losing our mind is so frightening that it
is likely to be denied. People will confabulate stories to
explain the gaps in their memories and, because their
cerebral function is impaired, these stories are often
transparently ridiculous.
People with defects and difficulties caused by sensory impairment or cognitive loss may turn
away from people who attempt to communicate with them
ADRIANA DORSETT
Warm and affectionate support of confused patients
will often relax tension and improve cognitive function
Education and debate
1162 BMJ VOLUME 316 11 APRIL 1998 www.bmj.com

Care of confused patients
The implications for care are clear. Whenever people are
inclined to confusion we should try to maintain their
orientation by providing them with reassurance and
with simple and familiar cues. If they become confused
at night we should turn on the light and talk clearly and
reassuringly to them. Warm and affectionate support
will often relax tension and improve cognitive function.
Although tranquillisers are sometimes needed, they may
aggravate confusion and it is wise to keep their use to a
minimum and to tail them off as soon as possible.
Progressive cognitive loss
In the more gradually progressive forms of cognitive
loss (dementia) people have time to get used to their loss
of memory and are less likely to become agitated. Even
so, they may get upset if something forcibly brings home
to them the fact of their loss of mental ability. Teasing
relatives or angry staff who blame patients for being
“stupid” may trigger a “catastrophic reaction” in which
the patient may rush off, assault people who are to hand,
or burst into tears. It is unkind repeatedly to remind
brain damaged people of what they have lost in the mis-
taken idea that they need help to grieve.
Although the dementing patient’s grief will usually
grow less as his or her condition becomes worse, the
same cannot be said of the grief of close family mem-
bers. It is hard for a husband or wife to accept that the
sensitive, considerate, and intelligent partner of 40
years has become forgetful, insensitive, and incapable
of the degree of abstract reasoning necessary to see
another person’s point of view.11 Many partners and
other caregivers will deny the severity of the
impairment and interpret the patient’s behaviour as
wilful or bad. It is often they, rather than the patient,
who need a shoulder to cry on. Organisations such as
the Alzheimer’s Society can do much to educate and
support carers.
Funding: None.
Conflict of interest: None.
1 Fitzgerald RG. Reactions to blindness: an exploratory study in adults with
recent loss of sight. Arch Gen Psychiatry 1970;22:370-9.
2 Fitzgerald RG. Visual phenomenology in recently blind adults. Am J
Psychiatry 1971;127:1533-9.
3 Fitzgerald RG. The newly blind: mental distress, somatic illness and
disability. Eye Ear Nose Throat Monthly 1973;5:2:99-101,127-32.
4 Fitzgerald RG. Commentary on sexual behaviour in the blind. Med Aspects
Hum Sexuality 1973;7:60.
5 Fitzgerald RG, Ebert J, Chambers M. Reactions to blindness: a four year
follow-up study. Percept Mot Skills 1987;64:363-78.
6 Knapp PH. Emotional aspects of hearing loss. Psychosom Med
1948;10:203-72.
7 Jones L, Kyle J, Wood P. Words apar t:losing your hearing as an adult.
London: Tavistock, 1987.
8 Thomas AJ, Herbst KR. Social psychological implications of acquired
deafness for adults of employment age. Br J Audiol 1980;14:76-85.
9 Swash M, Oxbury J, eds. Clinical neurology. Vol 1. London: Churchill
Livingstone, 1991.
10 Oehler-Giarratana J, Fitzgerald RG. Group therapy with blind diabetics.
Arch Gen Psychiatry 1980;37:463-7.
11 Theut SK, Jordan L, Ross LA, Deutsch SI. Caregiver’s anticipatory grief in
dementia. Int J Aging Hum Dev 1991;33:113-8.
The articles in this
series are adapted
from Coping with
Loss, edited by
Colin Murray
Parkes and
Andrew Markus,
which will be
published in July.
A memorable patient
The guiding hand
“What about his little arm, then?” It was some months since I had
last seen the child, now seemingly healthy and normal after the
grave illness which he had suffered earlier in the year.But his
mother, far from expressing the happy thankfulness which I had
expected, had something else to say. She pulled up a sleeve, and
there at the bend of the elbow was a small scar, healing nicely but
still a blemish in that clear infant skin. I looked at it tenderly. “I
think it will gradually clear away as he gets older,” I said.
It had been a grim 24 hours. Barely conscious on admission,
the baby had been vaccinated a couple of weeks previously. At the
age of 4 months it was a dangerous time, and we had made a
diagnosis of post-vaccinial encephalitis, a rare condition with a
high mortality. Steady deterioration followed; a high fever,
generalised rigidity and increasingly frequent convulsions were
the main features, and there had been no response to our efforts
at sedation. The only redeeming feature was a hospital at peace,
for it was a Sunday afternoon and in those days there was no
visiting.
A moribund baby at death’s door, what next? Despairingly,
while someone held the tiny arm, I picked up a fold of skin at the
bend of the elbow and made a desperate cut, almost at random,
with a pair of small sharp scissors, straight through the skin and
subcutaneous tissues and finally halfway across a tiny vein whose
lumen gaped invitingly before me. This was 1941, and we were
not very handy at intravenous therapy in infants, but this was easy
and the drip was running in no time at all. Pentothal was our
chosen sedative, it had not been tried before, and I could only
guess at the dosage. But it must have been right, for in a few
minutes the little body relaxed and the convulsions ceased, never
to return. Earlier in the day, I had taken a few ounces of blood
from two of our trainee nurses, who had been successfully
vaccinated three weeks before. The decanted serum followed into
the drip, carrying with it, I hoped, all the right antibodies in
abundance. From then on, all was plain sailing and the child left
hospital a few days later, apparently fully recovered. Perhaps a
miracle, and for me the decisive moment was that random lunge
with the scissors, guided by luck, providence, and the grace of
God.
Over the past 50 odd years since I have occasionally wondered
what happened to that little boy. Perhaps he grew up to play for
Leeds United or even to bowl for Yorkshire. And I hope that his
mother has forgotten about “his little arm” and I have been
forgiven.
A formal account of this case was published in Archives of
Disease in Childhood 1942;17:162-5.
CL Davidson, retired consultant physician, Bolton Abbey
We welcome articles up to 600 words on topics such as
A memorable patient, A paper that changed my practice,My most
unfortunate mistake, or any other piece conveying instruction,
pathos, or humour. If possible the article should be supplied on a
disk. Permission is needed from the patient or a relative if an
identifiable patient is referred to.We also welcome contributions
for “Endpieces,”consisting of quotations of up to 80 words (but
most are considerably shorter) from any source, ancient or
modern, which have appealed to the reader.
It is often the partners and caregivers of confused
patients, rather than the patient, who need a shoulder
to cry on
Education and debate
1163BMJ VOLUME 316 11 APRIL 1998 www.bmj.com