Description
This week’s topic is in many ways the most important one: Ethics.
Global health presents a fraught ethical landscape, especially for people from wealthy countries who want to help those most in need (often in low and middle income countries, though we obviously have huge swathes of people in need right here in the US as well).
One widely-used approach to thinking about biomedical ethics (which you saw in last week’s reading) is based on four basic principles:
Beneficence (doing good / providing benefits)
Non-maleficence (“do no harm”)
Respect for autonomy (allowing people to make informed decisions), and
Justice (fairness)
In the messy world of global health, these principles often come into conflict, and knowing how to apply them can be complicated.
For your initial DQ response, find a global health program that interests you and consider it in light of these four principles. Do any of these principles raise any issues about the design and execution of the global health program? Are there aspects of the program that do particularly well in addressing one or more of these principles? How might the program be modified to address ethical weaknesses or enhance ethical strengths?
As always, please remember to respond to two of your classmates’ posts for your follow-on participation. Your initial post is due by the end of Thursday, and your follow-on posts by Sunday.
Resources to use
Lecture 7 – Ethics overview
Medical ethics- four principles plus attention to scope – corrected
U.S. Missionary With No Medical Training Sued After Malnourished Ugandan Children Died At Her Center _ Goats and Soda _ NPR
Initial response (50% of discussion assignment grade): A post of approximately 200-350 words that directly addresses one of the week’s discussion topics and cites appropriate evidence to support your ideas (details below).
Follow-on participation (50% of discussion assignment grade): Write two or more substantive posts in response to other students’ initial responses and cite appropriate evidence to support your ideas (details below). Substantive posts do more than say, “I agree,” or “I disagree.” They add new evidence and new insight to the discussion. Follow-on posts should generally be 100-250 words long, but shorter or longer responses are acceptable as long as they make a significant contribution to the week’s discussion.KEY ETHICAL PRINCIPLES
FOR GLOBAL HEALTH
THE FOUR PRINCIPLES
APPROACH
Beneficence
Non-maleficence
Justice
Respect for autonomy
THE FOUR PRINCIPLES
APPROACH
Beneficence
! Do good / provide benefit for the people and populations you serve
Non-maleficence
Justice
Respect for autonomy
THE FOUR PRINCIPLES
APPROACH
Beneficence
Non-maleficence
! “First, do no harm”
! Avoidable harm vs. unavoidable harm
! e.g., Surgery is an assault on the body
Justice
Respect for autonomy
THE FOUR PRINCIPLES
APPROACH
Beneficence
Non-maleficence
Justice
! Fairness, equity
! Includes ideas like
! Environmental justice
! Distributive justice
Respect for autonomy
THE FOUR PRINCIPLES
APPROACH
Beneficence
Non-maleficence
Justice
Respect for autonomy
! Allowing people to make decisions about their own lives, vs. imposing decisions on
them
! Supporting informed decision-making is key
BALANCING THE PRINCIPLES
Sometimes the principles come into conflict
! e.g., Surgery may do both good (implicating beneficence) and harm (implicating nonmaleficence)
! The same surgery may pull limited resources ($$$) away from more effective public
health measures
! Or surgery might be pushed as a way to cross-subsidize those efforts
! People might wish to make health choices that are bad for them… or their children
(autonomy vs. beneficence)
BALANCING RISKS AND
POTENTIAL BENEFITS
Often, where health improvement efforts falter is in assessing the risks
and potential benefits of a course of action
All four principles + risk/benefit assessment are supported by
participatory decision-making
! Participatory program design
! Participatory governance
! Community-based participatory research (CBPR)
! Patient-centered care
BELMONT REPORT APPROACH
Three ethical principles:
•Beneficence
•Justice
•Respect for persons
9
BELMONT REPORT APPROACH
Three ethical principles:
•Beneficence
• Do no (avoidable) harm
• Maximize potential benefits
• Minimize potential harms
•Justice
•Respect for persons
10
BELMONT REPORT APPROACH
Three ethical principles:
•Beneficence
•Justice
• Focuses on the distribution of the benefits and burdens of health research
•Respect for persons
11
BELMONT REPORT APPROACH
Three ethical principles:
•Beneficence
•Justice
•Respect for persons
• Acknowledge autonomy
• Extra protections for those with diminished autonomy & other vulnerable populations
• Voluntary participation
• Informed consent
12
Flexibility
…_
Flexibility allows the safe use of a
wide range of movements.
Flexibility is an essential part of training because it allows us to use a wide
range of movements safely. In some sports such as gymnastics, flexibility is
high on the list of training priorities. Coaches of such sports have their own
methods of assessing improvements in flexibility. Comprehensive and
reproducible assessment is difficult to achieve, however, because of the
complex nature of movement. Nevertheless, carefully controlled
measurements, albeit in limited ranges of movements, can be used to assess
flexibility with a simple set of goniometers. It is particularly important that
the measurements are standardised and that in longitudinal studies the
same person performs all the measurements. The results can contribute
useful information in assessing overall fitness when this strict code of
practice is followed.
Conclusion
Clyde Williams is professor of sports science at the
University of Loughborough.
The ABC of Sports Medicine has been edited by Greg
McLatchie, visitingprofessor ofsports medicine and surgical
sciences at the University of Sunderland, consultant surgeon
at Hartlepool General Hospital, and director of the National
Sports Medicine Institute, London.
Fitness is a complex physiological characteristic that is difficult to
describe comprehensively. Nevertheless, we can assess the central elements
of fitness in reliable and reproducible ways. Through assessing athletes
fitness we can extend health care by advising them on their ability to cope
with the exercise demands of their chosen sport.
The photographs of the javelin thrower (Tessa Sanderson) and of the woman gymnast-
(Jackie Brady) were taken by Supersport Photographs.
Medical ethics: four principles plus attention to scope
Raanan Gillon
The “four principles plus scope” approach provides
a simple, accessible, and culturally neutral approach
to thinking about ethical issues in health care. The
approach, developed in the United States, is based
on four common, basic prima facie moral commitments-respect for autonomy, beneficence, nonmaleficence, and justice-plus concern for their
scope of application. It offers a common, basic
moral analytical framework and a common, basic
moral language. Although they do not provide
ordered rules, these principles can help doctors and
other health care workers to make decisions when
reflecting on moral issues that arise at work.
Imperial College of
Science, Technology and
Medicine,
London SW7 INA
Raanan Gillon, visiting
professor ofmedical ethics
BMY 1994;309:184-8
184
Nine years ago the BMJ allowed me to introduce to its
readers’ an approach to medical ethics developed by
the Americans Beauchamp and Childress,’ which is
based on four prima facie moral principles and attention
to these principles’ scope of application. Since then I
have often been asked for a summary of this approach
by doctors and other health care workers who find it
helpful for organising their thoughts about medical
ethics. This paper, based on the preface of a large
multiauthor textbook on medical ethics,3 offers a brief
account of this “four principles plus scope” approach.
The four principles plus scope approach claims that
whatever our personal philosophy, politics, religion,
moral theory, or life stance, we will find no difficulty
in committing ourselves to four prima facie moral
principles plus a reflective concern about their scope of
application. Moreover, these four principles, plus
attention to their scope of application, encompass most
of the moral issues that arise in health care.
The four prima facie principles are respect for
autonomy, beneficence, non-maleficence, and justice.
“Prima facie,” a term introduced by the English
philosopher W D Ross, means that the principle is
binding unless it conflicts with another moral principle
-if it does we have to choose between them. The four
principles approach does not provide a method for
choosing, which is a source of dissatisfaction to people
who suppose that ethics merely comprises a set of
ordered rules and that once the relevant information is
fed into an algorithm or computer out will pop the
answer. What the principles plus scope approach
can provide, however, is a common set of moral
commitments, a common moral language, and a
common set of moral issues. We should consider these
in each case before coming to our own answer using our
preferred moral theory or other approach to choose
between these principles when they conflict.
Respect for autonomy
Autonomy-literally, self rule, but probably better
described as deliberated self rule-is a special attribute
BMJ VOLUME 309
16 JULY 1994
of all moral agents. If we have autonomy we can make
our own decisions on the basis of deliberation; sometimes we can intend to do things as a result of those
decisions; and sometimes we can do those things to
implement the decisions (what I previously described
as autonomy of thought, of will or intention, and of
action). Respect for autonomy is the moral obligation
to respect the autonomy of others in so far as such
respect is compatible with equal respect for the
autonomy of all potentially affected. Respect for
autonomy is also sometimes described, in Kantian
terms, as treating others as ends in themselves and
never merely as means-one of Kant’s formulations of
his “categorical imperative.”
In health care respecting people’s autonomy has
many prima facie implications. It requires us to consult
people and obtain their agreement before we do things
to them-hence the obligation to obtain informed
consent from patients before we do things to try to help
them. Medical confidentiality is another implication of
respecting people’s autonomy. We do not have any
general obligation to keep other people’s secrets, but
health care workers explicitly or implicitly promise
their patients and clients that they will keep confidential
the information confided to them. Keeping promises is
a way of respecting people’s autonomy; an aspect of
running our own life depends on being able to rely on
the promises made to us by others. Without such
promises of confidentiality patients are also far less
likely to divulge the often highly private and sensitive
information that is needed for their optimal care;
thus maintaining confidentiality not only respects
patients’ autonomy but also increases the likelihood of
our being able to help them.
Respect for autonomy also requires us not to deceive
each other (except in circumstances in which deceit is
agreed to be permissible, such as when playing poker)
as the absence of deceit is part of the implicit agreement
among moral agents when they communicate with each
other. They organise their lives on the assumption that
people will not deceive them; their autonomy is
infringed if they are deceived. Respect for patients’
autonomy prima facie requires us, therefore, not to
deceive patients, for example, about their diagnosed
illness unless they clearly wish to be deceived. Respect
for autonomy even requires us to be on time for
appointments as an agreed appointment is a kind of
mutual promise and if we do not keep an appointment
we break the promise.
To exercise respect for autonomy health care workers
must be able to communicate well with their patients
and clients. Good communication requires, most
importantly, listening (and not just with the ears) as
well as telling (and not just with the lips or a
wordprocessor) and is usually necessary for giving
patients adequate information about any proposed
intervention and for finding out whether patients want
that intervention. Good communication is also usually
necessary for finding out when patients do not want a
lot of information; some patients do not want to be told
about a bad prognosis or to participate in deciding
which of several treatments to have, preferring to leave
this decision to their doctors. Respecting such attitudes
shows just as much respect for a patient’s autonomy as
does giving patients information that they do want. In
my experience, however, most patients want more not
less information and want to participate in deciding
their medical care.
Beneficence and non-maleficence
Whenever we try to help others we inevitably risk
harming them; health care workers, who are committed
to helping others, must therefore consider the principles of beneficence and non-maleficence together and
BMJ
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aim at producing net benefit over harm. None the less,
we must keep the two principles separate for those
circumstances in which we have or recognise no
obligation of beneficence to others (as we still have an
obligation not to harm them). Thus the traditional
Hippocratic moral obligation of medicine is to provide
net medical benefit to patients with minimal harmthat is, beneficence with non-maleficence. To achieve
these moral objectives health care workers are committed to a wide range of prima facie obligations.
We need to ensure that we can provide the benefits
we profess (thus “professional”) to be able to provide.
Hence we need rigorous and effective education and
training both before and during our professional lives.
We also need to make sure that we are offering each
patient net benefit. Interestingly, to do this we must
respect the patient’s autonomy for what constitutes
benefit for one patient may be harm for another. For
example, a mastectomy may constitute a prospective
net benefit for one woman with breast cancer, while for
another the destruction of an aspect of her feminine
identity may be so harmful that it cannot be outweighed
even by the prospect of an extended life expectancy.
The obligation to provide net benefit to patients also
requires us to be clear about risk and probability when
we make our assessments of harm and benefit. Clearly,
a low probability of great harm such as death or severe
disability is of less moral importance in the context of
non-maleficence than is a high probability of such
harm, and a high probability of great benefit such as
cure of a life threatening disease is of more moral
importance in the context of beneficence than is a
low probability of such benefit. We therefore need
empirical information about the probabilities of the
various harms and benefits that may result from
proposed health care interventions. This information
has to come from effective medical research, which is
also therefore a prima facie moral obligation. The
obligation to produce net benefit, however, also
requires us to define whose benefit and whose harms
are likely to result from a proposed intervention. This
problem of moral scope is particularly important in
medical research and population medicine.
One moral concept that in recent years has become
popular in health care is that of empowerment-that is,
doing things to help patients and clients to be more in
control of their health and health care. Sometimes
empowerment is even proposed as a new moral
obligation. On reflection I think that empowerment is,
however, essentially an action that combines the two
moral obligations of beneficence and respect for
autonomy to help patients in ways that not only respect
but also enhance their autonomy.
Justice
The fourth prima facie moral principle is justice.
Justice is often regarded as being synonymous with
fairness and can be summarised as the moral obligation
to act on the basis of fair adjudication between
competing claims. In health care ethics I have found it
useful to subdivide obligations of justice into three
categories: fair distribution of scarce resources
(distributive justice), respect for people’s rights (rights
based justice) and respect for morally acceptable laws
(legal justice).
Equality is at the heart of justice, but, as Aristotle
argued so long ago, justice is more than mere equality
-people can be treated unjustly even if they are
treated equally.45 He argued that it was important to
treat equals equally (what health economists are
increasingly calling horizontal equity) and to treat
unequals unequally in proportion to the morally
relevant inequalities (vertical equity). People have
argued ever since about the morally relevant criteria for
185
regarding and treating people as equals and those for
regarding and treating them as unequals. The debate
flourishes in moral, religious, philosophical, and
political contexts, and we are no closer to agreement
than we were in Aristotle’s time.
Pending such agreement health care workers need to
tread warily as we have no special justification for
imposing our own personal or professional views about
justice on others. We certainly need to recognise
and acknowledge the competing moral concerns. For
example, in the context of the allocation of resources
conflicts exist between several common moral concerns:
to provide sufficient health care to meet the needs of all
who need it; when this is impossible, to distribute
health care resources in proportion to the extent of
people’s needs for health care; to allow health care
workers to give priority to the needs of “their”
patients; to provide equal access to health care; to allow
people as much choice as possible in selecting their
health care; to maximise the benefit produced by the
available resources; to respect the autonomy of the
people who provide those resources and thus to limit
the cost to taxpayers and subscribers to health insurance
schemes. All these criteria for justly allocating health
care resources can be morally justified but not all can be
fully met simultaneously.
Similar moral conflicts arise in the context of rights
based justice and legal justice.
provide a certificate of sickness ifhe or she cannot work
because of sickness. I have no special privilege as a
health care worker, however, to create societal rights
for my patients. For example, while I might think that
all my unemployed patients should receive sickness
benefit, in Britain they have a right to receive it only if
they cannot work because of sickness; I have a right,
therefore, to provide a certificate of sickness only if this
is the case.
Fourthly, I ought to obey morally acceptable laws.
Thus, even though I may disapprove of breaking a
patient’s confidence, if he or she has one of several
infectious diseases I am legally obliged to notify the
relevant authorities. If I believe that the law is morally
unjustified I am morally entitled to break the law; but
this gives me no legal entitlement to break the law,
and I should be prepared to face the legal consequences
of disobeying it. I should also decide exactly what I
mean by a morally unjustified law. I suggest, though
here do not argue, that it is the processes through
which laws are enacted that confer moral legitimacy
not the content of the laws. Thus if a law is enacted
through a democratic political system-and hence
one that fundamentally respects autonomy-which
represents conflicting views within its population and
makes laws on the basis of certain common moral
values that reflect the four principles then that law is
morally acceptable, and prima facie we are morally
required to obey it.
PERSONAL DECISION MAKING
The best moral strategy for justice that I have found
for myself as a health care worker is first to distinguish
whether it is I or an organisation, profession, or society
itself that has to make a decision. For example, “how
should I respond to a particular patient who wants an
abortion?” is distinct from, “what is this hospital’s
organisational view on abortion?” and “what is the
medical profession’s collective view on abortion?” and
“what is society’s view as expressed in law and
practice?”
Firstly, for decisions that I must take myself
I must try to exclude decisions that have no moral basis
or justification. Neither pursuit of my own self interest
-for example, accepting bribes from patients,
hospitals, or drug manufacturers-nor action that
discriminates against patients on the basis of personal
preference or prejudice can provide a just or morally
acceptable basis for allocating scarce health care
resources or for any other category of justice. Moreover,
it is not my role as a doctor to punish patients;
withholding antibiotics from smokers who do not give
up smoking or refusing to refer heavy drinkers with
liver damage induced by alcohol for specialist assessment on the grounds that they are at fault is not a just
or morally acceptable basis for rationing my medical
resources.
Secondly, I should not waste the resources at my
disposal; so if a cheaper drug is likely to produce as
much benefit as a more expensive one I should
prescribe the cheaper one. Cost and its team mate
opportunity cost are moral issues and central to
distributive justice. If I believe, however, that an
expensive drug is clearly and significantly better for my
patient than a cheaper alternative and I am allowed
to prescribe it then I believe that I should do so.
Thus, like many British general practitioners, I try
oxytetracycline first when treating acne, but if it
does not work well I prescribe the more expensive
minocycline; for depression I usually start with tricyclic antidepressants, but if they do not work well
or the side effects are unacceptable I prescribe the new
and expensive 5-hydroxytryptamine uptake inhibitors.
Thirdly, I should respect patients’ rights. For
example, my disapproval of a patient’s lifestyle would
not be a morally acceptable justification for refusing to
186
ORGANISATIONAL, PROFESSIONAL, AND SOCIETAL
DECISIONS
My role in taking decisions about justice that are
organisational, professional, or societal should only be
as a member of the relevant organisation, profession,
or society. It is therefore morally consistent to pursue
at different levels objectives that are mutually inconsistent. The medical directorate at the hospital
where I work may have decided to prohibit the
prescription of a particularly expensive drug. As a
member of that directorate I may have argued in favour
of prescribing the drug in special cases, but my
arguments were rejected. It is morally proper for me as
a clinician to accept the directorate’s decision and act
accordingly even when faced with an exceptional case
in which I believe the expensive drug would be
preferable. It is also morally legitimate for me to point
to such cases (“shroud waving”) in my political role
as a member of a democratic society, arguing, for
example, for more resources for health care than, say,
for defence.
As members of society we are still feeling our way
even at the level of defining what the competing moral
concerns of justice are. We must be particularly wary
of apparently simple solutions to what have been
perceived as highly complex problems for at least
2500 years. For example, populist solutions in
distributive justice such as have occurred in Oregon
in the United States6 and technical and simplistic
economic solutions such as the system of costed quality
adjusted life years (QALYs)’ are tempting in their
definitiveness and simplicity; they fail, however, to
give value to the wide range of other potentially
relevant moral concerns. Until there is far greater
social agreement and understanding of these exceedingly complex issues I believe it is morally safer to seek
gradual improvement in our current methods of trying
to reconcile the competing moral concerns-to seek
ways of “muddling through elegantly” as Hunter
advocates&-than to be seduced by systems that seek to
convert these essentially moral choices into apparently
scientific, numerical methods and formulas.
As Calabresi and Bobbitt suggested in the 1970s,
rationing scarce resources that prolong life and enhance
health often entails tragic choices-choices between
BMJ VOLUME 309
16 JULY 1994
or not to respect the decision of a girl of 14 to take the
oral contraceptive pill we are in effect disagreeing
about the scope of application of the principle of
respect for autonomy.
Similar questions about the scope of respect for
autonomy arise in other paediatric contexts, in the care
of severely mentally ill or mentally impaired people,
and in the care of elderly people who are severely
mentally impaired. Some patients clearly do not fall
within the scope of respect for autonomy; newborn
babies, for example, are not autonomous agents as
autonomy requires the capacity to deliberate. But 7
year olds usually can deliberate to a degree. How much
capacity for logical thought and deliberation and what
other attributes are required for somebody to be
an adequately autonomous agent? Possible other,
Scope
necessary attributes include an adequately extensive
We may agree about our substantive moral commit- and accurate knowledge base, including that born of
ments and our prima facie moral obligations of respect experience and of accurte perception, on which to
for autonomy, beneficence, non-maleficence, and deliberate; an ability to conceive of and reflect on
justice, yet we may still disagree about their scope of ourselves over time, both past and future; an ability to
application-that is, we may disagree radically about reason hypothetically-“what if’ reasoning; an ability
to what or to whom we owe these moral obligations. to defer gratification for ourselves as an aspect of self
Interesting and important theoretical issues surround rule; and sufficient will power for self rule.
However these philosophical questions are anthe scope of each of the four principles. We clearly do
not owe a duty of beneficence to everyone and swered, health care workers increasingly acknowledge
everything; so whom or what do we have a moral duty that the autonomy of even young children and severely
to help and how much should we help them? While we mentally impaired people should prima facie be
clearly have a prima facie obligation to avoid harming respected unless there are good moral reasons not to do
everyone, who and what count as everyone? Similarly, so. Moreover, those reasons will depend highly on the
even if we agree that the scope of the principle of context; a young child or a severely mentally impaired
respect for autonomy is universal, encompassing person may not be autonomous enough to have his or
all autonomous agents, who or what counts as an her decision to reject an operation respected but be
autonomous enough to decide what food to eat or
autonomous agent?
Who or what falls within the scope of our obligation clothes to wear. When patients who are not adequately
to distribute scarce resources fairly according to the autonomous for all their decisions to be respected make
principle of justice? Is it everyone in the world? Future decisions that seem to be against their ifiterests then
people? Just people in our own countries? And who or important issues arise about who should be regarded as
what has rights? Do plants have rights? Does the appropriate to make decisions on their behalf and
environment have rights? Does a work of art have about the criteria that they should use to do so.
The second important issue of scope for health care
rights? Do animals have rights and if so, which
animals? Conversely, against whom may holders of workers concerns the “right to life.” Who or what has
rights claim the correlative moral obligation? Similar this right to life? To answer the question we have
to determine what is meant by the right to life.
questions concern the scope of legal justice.
Specifically, is it simply the right not to be unjustly
SCOPE FOR HEALTH CARE WORKERS
killed or does it also include a right to be kept alive?
Fortunately for health care workers some of these The scope of the first right will clearly be greater than
issues of scope have been clarified for them by their the scope of the latter: we have prima facie moral
special relationship with their patients or clients. In obligations not to kill all people but we have obligations
particular, the controversial issue of who falls within to keep alive only some people. Even with the first
the scope of beneficence is answered unambiguously definition of the right to life (a right not to be unjustly
for at least one category of people: all health care killed) a question of scope arises; although all people
workers have a moral obligation to help their patients clearly fall within its scope, do (non-human) animals?
and clients. Patients or clients fall within the scope of And what do we mean by people? In response to
the health care workers’ duty of beneficence. This this last question much debate, often extremely
fact is established by the personal and professional acrimonious, occurs in health care ethics over the right
commitments of the health care professionals and their to life of human embryos, fetuses, newborn babies,
organisations-they all profess a commitment to help and patients who are permanently unconscious or even
their patients and clients, and to do so with minimal brain dead.
It is salutary to reflect that these contentious issues
harm. This commitment is underwritten by the
societies in which they practise, both informally and are not about the content of our moral obligations but
through legal rules and regulations that define the about to whom and what we owe them-that is, they
health care professionals’ duties of care.
are questions about the scope of our agreed moral
Two issues of scope are of particular practical obligations. Our answers are reasoned and carefully
importance for health care workers. The first is the argued but deeply conflicting, either religiously or
question ofwho falls within the scope of the prima facie philosophically. Such disagreement about scope does
principle of respect for autonomy. The second is not justify accusing those who disagree with us of
the question of what is the scope of the widely bad faith or incompatible moral standards; in principle
acknowledged “right to life”; who and what has a right it is open to resolution within our shared moral
to life?
commitment.
Obviously the scope of the principle of respect for
autonomy must include autonomous agents-we
cannot respect the autonomy of a boot or anything else Conclusion
The four principles plus scope approach is clearly
that is not autonomous. But who or what counts as an
autonomous agent? When we disagree about whether not without its critics. And the approach does not
people and between values. Societies seek strategies to
minimise the destructive effect of such choices,
including tendencies to change their strategies over
time.9 Calabresi suggests that we are like a juggler
trying to keep too many balls in the air; like the juggler
we must do our best to improve our juggling skills to
keep more balls in the air for more of the time and to
avoid letting any ball stay on the ground for too long.
We must accept, however, that in the context of
competing and mutually incompatible claims there will
always be some balls on the ground. Moreover, we
should not be surprised that there will always be some
people dissatisfied after justice has been done because
by definition not everyone’s claims can be met.
Pursuit ofjustice-keeping all
the balls in the air
BMJ
VOLUME 309
16 JULY 1994
purport to offer a method of dealing with conflicts
between the principles. But I have not found anyone
who seriously argues that he or she cannot accept any
of these prima facie principles or found plausible
examples of concerns about health care ethics that
require additional moral principles.
The four principles plus scope approach enables
health care workers from totally disparate moral
cultures to share a fairly basic, common moral commitment, common moral language, and common analytical
framework for reflecting on problems in health care
ethics. Such an approach, which is neutral between
competing religious, political, cultural, and philosophical theories, can be shared by everyone regardless
of their background. It is surely too important a moral
prize to be rejected carelessly or ignorantly; for the
sake of mere opposition; or for the fun of being a
philosophical “Socratic gadfly.”
1 Gillon R. Philosophical medical ethics. Chichester: Wiley, 1986. (From a 26 part
series in BMJ from 1985;290: 1117-9 to 1986;292:543-5.)
2 Beauchamp TL, Childress JF. Principles of biomedical ethics. 3rd ed. New York,
Oxford: Oxford University Press, 1989.
3 Gillon R, Lloyd A, eds. Principles of health care ethics. Chichester: Wiley, 1994.
4 Aristotle. Nichomachean ethics. Book 5. McKeon R, ed. The basic works of
Aristotle. New York: Random House, 1941.
5 Aristotle. Politics. Book 3, chapter 9. McKeon R, ed. The basic works of
Aristotle. New York: Random House, 1941.
6 Klein R. On the Oregon trail: rationing health care-more politics than science.
BMJ 1991;302:1-2.
7 Williams A. Economics, society and health care ethics. In: Gillon R, Lloyd A,
eds. Principles of health care ethics. Chichester: Wiley, 1994:829-42.
8 Hunter DJ. Rationing dilemmas in health care. Birmingham: National Association
of Health Authorities and Trusts, 1993. (NAHAT research paper No 8.)
9 Calabresi G, Bobbitt P. Tragic choices. New York: Norton, 1978.
(Accepted 16March 1994)
Statistics Notes
Diagnostic tests 3: receiver operating characteristic plots
Douglas G Altman, J Martin Bland
This is the seventh in a series of
occasional notes on medical
statistics.
We have previously considered diagnosis based on
tests that give a yes or no answer.’2 Many diagnostic
tests, however, are quantitative, notably in clinical
chemistry. The same statistical approach can be used
only if we can select a cut off point to distinguish
“normal” from “abnormal,” which is not a trivial
problem. Firstly, we can investigate to what extent the
test results differ among people who do or do not have
the diagnosis of interest. The receiver operating
characteristic (ROC) plot is one way to do this. These
plots were developed in the 1950s for evaluating radar
signal detection. Only recently have they become
commonly used in medicine.
We assume that high values are more likely among
those dubbed “abnormal.” Figure 1 shows the values
of an index of mixed epidermal cell lymphocyte
reactions in bone marrow transplant recipients who did
or did not develop graft versus host disease.3 The
usefulness of the test for predicting graft versus host
disease will clearly relate to the degree of non- overlap
between the two distributions.
A receiver operating characteristic plot is obtained
by calculating the sensitivity and specificity of every
observed data value and plotting sensitivity against
1-specificity, as in Figure 2. A test that perfectly
discriminates between the two groups would yield a
10-
0
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8
/
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8-
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Medical Statistics
Laboratory, Imperial
Cancer Research Fund,
London WC2A 3PX
Douglas G Altman, head
Department ofPublic
Health Sciences, St
George’s Hospital Medical
School, London
SW17 IRE
J Martin Bland, reader in
medical statistics
BMJ 1994309:188
188
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2
–
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0
0
o000
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00
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– specificity
000000
FIGI1 (left) -Distribution of
values ofan index ofmixed
epidermal cell lymphocyte
reactions in patients who did or
did not develop graft versus host
No
Yes
Graft v host disease
FIG 2 (above)-Receiver
characteristic curve for
operating
the data shown infig 1
00
0
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000
0
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0
0
disease3
“curve” that coincided with the left and top sides of the
plot. A test that is completely useless would give a
straight line from the bottom left corner to the top right
corner. In practice there is virtually always some
overlap of the values in the two groups, so the curve
will lie somewhere between these extremes.
A global assessment of the performance of the test
(sometimes called diagnostic accuracy4) is given by the
area under the receiver operating characteristic curve.
This area is equal to the probability that a random
person with the disease has a higher value of the
measurement than a random person without the
disease. (This probability is a half for an uninformative
test-equivalent to tossing a coin.)
No test will be clinically useful if it cannot
discriminate,4 so a global assessment of discriminatory
power is an important step. Having determined that a
test does provide good discrimination the choice can be
made of the best cut off point for clinical use. This
requires the choice of a particular point, and is thus a
local assessment. The simple approach of minimising
“errors” (equivalent to maximising the sum of the
sensitivity and specificity) is not necessarily best.
Consideration needs to be given to the costs (not just
financial) of false negative and false positive diagnoses
and to the prevalence of the disease in the subjects
being tested.4 For example, when screening the general
population for cancer the cut off point would be chosen
to ensure that most cases were detected (high
sensitivity) at the cost of many false positives (low
specificity), who could then be eliminated by a further
test.
A receiver operating characteristic plot is particularly
useful when comparing two or more measures. A test
with a curve that lies wholly above the curve of another
will be clearly better. Methods for comparing the areas
under two curves for both paired and unpaired data are
reviewed by Zweig and Campbell,4 who give a full
assessment of this method.
1 Altman DG, Bland M. Diagnostic tests 1: sensitivity and specificity. BMJ
1994;308:1552.
2 Altman DG, Bland M. Diagnostic tests 2: predictive values. BMJ 1994;309:
102.
3 Bagot M, Mary J-Y, Heslan M, et al. The mixed epidermal cell lymphocytereaction is the most predictive factor of acute graft- versus-host disease in
bone marrow graft recipients. BrJ Haematoll988;70:403-9.
4 Zweig MH, Campbell G. Receiver-operating characteristic (ROC) plots: a
fundamental evaluation tool in clinical medicine. Clin Chem 1993;39:
561-77.
BMJ VOLUME 309
16 JULY 1994
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Renee Bach, 30, is being sued in Ugandan civil court over the deaths of children who were treated at the critical care
center she ran in Uganda. She has left Uganda and is now living in Bedford County, Virginia, where she grew up.
Julia Rendleman/for NPR
Ten years ago, Renee Bach left her home in Virginia to set up a charity to help children
in Uganda. One of her first moves was to start a blog chronicling her experiences.
Among the most momentous: On a Sunday morning in October 2011, a couple from a
village some distance away showed up at Bach’s center carrying a small bundle.
“When I pulled the covering back my eyes widened,” Bach wrote in the blog. “For
under the blanket lay a small, but very, very swollen, pale baby girl. Her breaths were
frighteningly slow. … The baby’s name is Patricia. She is 9 months old.”
Bach went on to write that Patricia had fallen sick three weeks earlier. But her parents
had been unable to find anyone closer to home who could cure her.
Then, wrote Bach, “One of their relatives told them about a ‘hospital’ … with a ‘White
Doctor.’ ”
Except Bach was not a doctor. She was a 20-year-old high school graduate with no
medical training. And not only was her center not a hospital — at the time it didn’t
employ a single doctor.
Yet from 2010 through 2015, Bach says, she took in 940 severely malnourished
children. And 105 of them died.
Now Bach is being sued in Ugandan civil court.
“Something that I was supposed to do”
How could a young American with no medical training even contemplate caring for
critically ill children in a foreign country? To understand, it helps to know that the
place where Bach set up her operation — the city of Jinja — had already become a hub
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of American volunteerism by the time she arrived.
A sprawling city of tens of thousands of people on the shores of Lake Victoria, Jinja is
surrounded by rural villages of considerable poverty. U.S. missionaries had set up a
host of charities there. And soon American teens raised in mostly evangelical churches
were streaming in to volunteer at them.
Bach was one of these teens. On her first trip, in 2007, she worked at a missionary-run
orphanage — staying on for nine months.
Once back home in Virginia, Bach — now 19 years old — came to a life-changing
conclusion: She should move to Jinja full time and set up her own charity.
In an interview with NPR, Bach says it felt like a calling from God.
“It was a very, very profound feeling and experience. It’s kind of hard to even describe
in words,” she says. “Like there was something that I was supposed to do.”
At first Bach wasn’t sure what that was, beyond a sense that it should address some
need that wasn’t already being met by existing charities.
Funded by money raised through church circles back home, Bach rented a large house
in one of Jinja’s poorer districts, called Masese, and began testing out options,
including starting a program to serve a free hot meal to neighborhood children. Twice
a week about 1,000 of them would line up by Bach’s house to receive a bowl of food.
Bach named her charity “Serving His Children.”
According to Bach, word of her feeding program spread through Jinja. In the fall of
2009, she says, she got a call from a staffer at the local children’s hospital asking if she
could help out with several severely malnourished children.
Bach says the staffer told her that from a medical standpoint, these kids had been
stabilized. They just needed to be fed back to health. Could Bach take them in?
Bach says seeing a child in this state — impossibly thin arms, ribs poking out, sunken
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eyes — “was almost an out-of-body experience. And a sense of, ‘Oh my goodness, this
isn’t right. This needs to stop.’ ”
She says she agreed to help the children. And before long she came to feel that this was
God’s plan for her: turn the house into a center where malnourished children and their
mothers could live while the youngsters recuperated — complete with free rations of
the special foods they would need, the medicines doctors had prescribed and lessons
for the mothers on nutrition … and the Bible.
In early 2010 Bach posted a blog entry titled “Here we go!” Her nutrition center was
up and running.
A disillusioned volunteer
Jackie Kramlich was one of many American volunteers drawn to the center.
“I went in with a lot of admiration,” Kramlich recalls.
It was the summer of 2011.
By this point Bach had hired three Ugandan nurses to help out during the day and
stocked a room she dubbed “the clinic” with medical gear such as oxygen tanks, IV
catheters and monitoring equipment.
The center was caring for as many as a dozen children at a time.
But Kramlich — who had just been certified as a registered nurse in North Dakota —
was taken aback to realize just how sick these children were. They weren’t just
malnourished. They had complicated illnesses.
“Pneumonia, intestinal parasites, tuberculosis, many were in stage 4 HIV,” Kramlich
says.
Almost every week a child would die.
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Also, it seemed to Kramlich that Bach, now 22 years old, was handling a lot of the
medical care herself.
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A court filing by Ugandan attorney Primah Kwagala includes excerpts from Renee Bach’s blog as well as from a blog
posted by a supporter of her charity who had visited and taken photos. This page above includes a photograph of
Bach inserting an IV catheter into the vein of a severely malnourished child.
Jan. 21, 2019, court filing by complainants suing Renee Bach in the High Court of Uganda in Jinja
Which brings us back to that baby Bach wrote about in her blog: 9-month-old Patricia.
In her blog, Bach wrote that she immediately ushered Patricia and her parents into
“the clinic.”
“I hooked the baby up to oxygen and got to work,” she wrote. “Took her temperature,
started an IV, checked her blood sugar, tested for malaria, and looked at her HB
count.” (That’s a measure of hemoglobin in the blood.)
“I was attempting to diagnose the many problems that could potentially be at hand.
Got it: Malaria: positive. H.B. 3.2. … a big problem … most likely fatal. … She needed a
blood transfusion. And fast.”
Next, Bach wrote, “we” — it’s not specified who is meant by “we” — started a blood
transfusion for Patricia.
But about 30 minutes later, Patricia seemed to take a turn.
“Her neck and face started swelling. A lot,” she wrote. “[Her] breathing went from bad
to worse. Her throat was beginning to close.”
That’s about the moment Bach called Kramlich on the phone to ask if Kramlich could
swing by the center.
“So I walk in,” Kramlich recalls, “and there’s this child, swollen, wheezing.” Kramlich
could see the blood still being transfused into Patricia’s vein. “And [Bach] goes, ‘You
know, I think she might be having a reaction. But I don’t know. Because, you know,
Google says that if they’re having a reaction, they’ll have a rash. And I don’t see a
rash.”
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Kramlich says that as was often the case, it was clear to her that Bach was the one
making the medical decisions. And in this instance, she says, none of the staff nurses
were even at the center.
“It’s just horrifying,” says Kramlich. In Uganda, just as in the U.S., only a medical
professional is permitted to perform invasive procedures like a blood transfusion. She
says her thought at that moment was, “This isn’t a game. You have no business
running blood — at all.”
Bach says it’s true she would sometimes perform medical procedures such as running
the tubing into a child for a blood transfusion or inserting an IV.
And sometimes, Bach says, “without a medical professional standing right next to me,
yes. But it was always under the request and direction of a medical professional.”
As for her blog posts, Bach tells NPR, “I was just writing to tell a story to my friends
and family.
“And a mistake that I made that I wish I wouldn’t have is, I very much wrote in first
person — which looking back sounded very prideful as if I wanted to allude to the fact
that I was, you know, doing all of those things myself. But the reality was that there
were medical professionals present doing those things.”
In the case of baby Patricia, Bach’s memory is that one of the staff nurses at her
nutrition center did the blood transfusion. And she says when Patricia seemed to have
a reaction, this nurse called up a private doctor, who — over the phone —
recommended that Patricia be rushed to a hospital.
Bach and Kramlich do agree that ultimately, Bach drove Patricia to a hospital. And
Patricia lived.
But for Kramlich this was too close a call.
“I was just beside myself. I mean furious.”
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Soon after, Kramlich quit — four months into what she had originally intended to be a
yearlong volunteering stint. Kramlich also sent a letter of concern to the charity’s
board of directors back in the U.S.
Dangers of treatment
Under both international health guidelines and Ugandan law, if a severely
malnourished child has the kind of extra complications Bach’s center was taking on —
serious respiratory infections, dehydration, swelling — this child must be treated in an
advanced medical facility.
Ideally this would be a hospital — but at the least a higher-level health center that has
been especially approved by Ugandan health authorities, says Dr. Joel Okullo,
chairman of the Uganda Medical and Dental Practitioners Council — the enforcement
agency for Uganda’s health regulations. Treating a child in this condition at even a
lower-level health clinic “would be breaking the law,” says Okullo.
And at this point, Bach’s nutrition center didn’t have any kind of health license or any
doctors on staff.
Saul Guerrero specializes in childhood severe acute malnutrition at UNICEF, the
world authority to which countries turn for help setting their regulations and
treatment programs.
Guerrero says malnourished children with extra complications are so fragile that
unless a health provider knows exactly what he or she is doing, it’s actually safer to do
nothing.
“Their metabolism is not working. Their immune system is not working. So once you
initiate any kind of treatment that will very often have knock-on effects,” he says.
Just hydrating them by putting them on an IV can trigger a heart attack — if the
sodium and potassium content isn’t continually adjusted to match the child’s
fluctuating levels.
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And if health workers are not treating the child in a facility that is fully equipped to
immediately address such emergencies, says Guerrero, “the chances that that child will
die are very, very high.”
In 2011, of the 129 children Bach took in, 20% died — nearly a third of them in the first
48 hours. In 2012, the death rate among these in-patient cases was 18%.
By 2013, Bach had hired two doctors and the death rate was 10%.
But Guerrero says even that rate is high by the standards set by international aid
groups. He adds that a designated government facility in Africa may have a death rate
of 20% or even higher at its in-patient ward if it is serving a very vulnerable
population. But facilities with those rates “make it all the way up to New York, to us at
HQ, because they are seen as a problem,” he says.
An American attitude
Bach says she took in these complicated cases “not because we felt like it was fine.” But
because there didn’t seem to be a better place for them.
“I mean I can tell you time and time again,” she says to NPR, “taking kids to hospital
after hospital, and them being like, ‘meh — we don’t really deal with malnutrition.
Your best bet is to take them back to your nutrition center.’
“It wasn’t ideal. But what do you do in a non-ideal situation?”
Hanifa Bachou, a Ugandan pediatrician who specializes in malnutrition, finds Bach’s
explanation preposterous.
“No, no, no. I don’t accept that,” says Bachou. During the period at issue, Bachou, then
based at the NGO University Research Co., was working with Uganda’s government on
a U.S. government-funded project to set up in-patient care for severely malnourished
children across the country. And by 2010, Bachou says, Jinja’s regional referral
hospital had a well-established malnutrition unit to care for complicated cases of
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severe acute malnutrition.
But even if there was a need for more in-patient care facilities for malnourished
children, specialists in medical ethics say it was not appropriate for Bach to try to
provide it.
“Just think of the arrogance,” says Lawrence Gostin, who heads the Center on National
and Global Health Law at Georgetown University. “Who are you to assume that you
can do better than they can? It’s not your judgment call to make.”
Gostin adds that while the circumstances of Bach’s case may seem exceptional, he sees
her actions as stemming from an attitude many Americans bring to developing
countries.
“The American cultural narrative is that these countries are basket cases.”
And so, says Gostin, Americans assume that whatever their qualifications, they’re sure
to be of help.
The result, Gostin says, is that everyone from college kids to credentialed doctors
routinely parachute into poor countries for medical missions that completely
disregard local laws and conditions.
“People think that they’re doing good. And they have no idea how much harm they can
cause.”
And people back home in the U.S. are often complicit, says Gostin. Because when
these volunteers write blogs or post videos to share their exploits, “They’re celebrated.”
Seeking justice
Kramlich, the volunteer at Bach’s center, says this mindset is a big reason that even
after quitting, she didn’t go straight to the police. That is what she would have done
had she encountered a center like Bach’s in the United States.
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But in this instance, she says, “people are praising [the center]. And [Bach] is receiving
funding. And she looks like Mother Teresa. You think, ‘It’s so out in the open that,
well, surely there must be something to this that’s OK.’ ”
But in February 2015, after hearing from an employee at Bach’s center that problems
there persisted, Kramlich filed a report with Ugandan police.
A month later a district health officer shut the center down.
In his report, the inspector noted that in 2014, Bach had obtained a health license for
the center. But it had expired. And in any case, the license had only authorized the
center to operate as an outpatient clinic. Instead, on his visit to the charity, he had
found “very sick children who need referral to higher centers.”
Primah Kwagala, a Ugandan attorney, has filed suit against Bach on behalf of two mothers of children who died after
being cared for by Bach’s charity.
Majungu Eva/evashots_Photography
“It is what shocked most of us,” says Primah Kwagala, a Ugandan civil rights attorney.
“We couldn’t imagine a human being without skill taking into her care people that
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were almost on their deathbeds.”
Bach notes that a few years later, the government authorized her to reopen her center,
this time in direct partnership with a government health center in a different district
and with Bach no longer involved in the medical care.
But Kwagala, who runs a legal aid group specializing in public health, says Bach
should have been held accountable for the deaths of children in her care. So early this
year, she filed a civil lawsuit against her. It’s on behalf of the mothers of two of the
children who died.
Her court filings include excerpts from Bach’s blog as well as a blog posted by a
supporter of the charity who visited and took photographs — including one of Bach
inserting an IV catheter into the vein of a severely malnourished child.
The next hearing date is scheduled for January 2020.
Bach says the publicity in Uganda over the suit has already made it untenable for her
to remain there. “I get death threats all the time.” She has moved back to Virginia and
has no plans to live in Uganda again.
Kwagala says the suit is deeply necessary. These families deserve justice, she says. And
there’s a larger principle at stake: Imagine, says Kwagala, if a 20-something Ugandan
woman had gone to the U.S. and set up an equivalent arrangement to treat
impoverished American children.
“She would have been prosecuted. She would have been behind bars,” says Kwagala.
In the U.S., says Kwagala, “I don’t think she would have lasted two hours.”
malnutrition
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