e-SPEN, the European e-Journal of Clinical Nutrition and Metabolism (2008) 3, e298ee302
e-SPEN,
EDUCATIONAL PAPER
Basics in clinical nutrition: Ethical and legal aspects
S.P. Allison
University Hospital, Nottingham, United Kingdom
Received 1 July 2008; accepted 1 July 2008
KEYWORDS
Beneficence;
Non maleficence;
Autonomy;
Motor neurone disease
Learning objectives
e To understand the principle of medical ethics
e To appreciate how these affect the practice of nutri-
tional care
e To appreciate some legal aspects of this practice.
Introduction
Ethical codes of caring professions include not only minimal
standards of behaviour but also ideals, and have been
described as the ‘‘collective conscience of our profession’’.
The law, on the other hand, defends individual rights and
liberties and sets minimum standards below which conduct
can be regarded as lacking in care, negligent or downright
criminal. It also protects those who are unable or in-
competent to make decisions for them.
Medical ethics are based on the following four principles:
I. Beneficence e do good
II. Non-maleficence e do no harm
III. Autonomy e the patient’s right to self-determination
IV. Justice e equal access to all.
E-mail address: espenjournals@gmail.com (Editorial Office).
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Beneficence and non-maleficence
The first two form part of our Hippocratic Oath, but
Hippocrates had no time for autonomy, preferring the role
of the paternalistic physician who makes all the decisions
for his patient, based on ‘‘philanthropia’’, i.e. doing well, in
order to preserve his reputation. He wrote: ‘‘Perform these
duties calmly and adroitly, concealing most things from the
patient while you are attending to him. Give necessary
orders with cheerfulness and sincerity, turning his attention
away from what is being done to him . revealing nothing of
the patient’s future or present condition.’’ e a far cry from
informed consent!
Four hundred years later, in the first century AD,
Scribonius Largus, physician to the Emperor Claudius,
encouraged physicians to base decisions on humanitas,
that is the love of mankind, and on misericordia, or mercy.
The ethical problems we face today, however, are
infinitely more complex and difficult than those faced by
our ancestors. A physician or surgeon in ancient times had
few drugs, a few rudimentary surgical techniques, and
often had little choice but to trust to nature. Hippocrates
himself wrote: ‘‘In most diseases, there is a tendency to
natural cure and, if the patient’s constitution is supported
by simple means (food and fluids), recovery will follow’’. It
was perhaps because of this therapeutic poverty that diet
Ethical and legal aspects
and nutritional support were recognized as having great
therapeutic importance. Again Hippocrates wrote:
‘‘Wherefore, I say, that such constitutions as suffer quickly
and strongly from errors in diet, are weaker than others
who do not; and that a weak person is in a state very nearly
approaching to one in disease. Whoever pays no attention
to these things or, paying attention, does not comprehend
them, how can he understand the diseases which befall
a man? For, by every one of these things, a man is affected
and changed this way or that, and the whole of his life is
subjected to them, whether in health, convalescence or
disease. Nothing else can be more important or necessary
to know than these things.’’ and again, he wrote: ‘‘In all
maladies, those who are well nourished do best. It is bad to
be very thin and wasted’’. He also prescribed, for acute
illness: ‘‘A diet of barley gruel with honey and water to
drink’’. In 1793, John Hunter, the father of British surgery,
describing a case of paralysis of the muscles of swallowing,
wrote: ‘‘It becomes our duty to adopt some artificial mode
of conveying food into the stomach by which the patient
may be kept alive while the disease continues’’. For 1500
years after Galen, the standard treatment for fever was
bleeding, starving and purging. With extraordinary insight,
Robert Graves, a Dublin physician, best known for his
description of thyrotoxicosis, realized that this treatment
might actually be harmful and be responsible for the high
mortality from typhus fever. In an outbreak of typhus in
Dublin in 1842, he abandoned conventional practice and
instead gave his patients food and drink. When asked the
reason for the consequent fall in mortality, he said: ‘‘You
are not to permit your patient to encounter the terrible
consequences of starvation because he does not ask for
nutriment: Gentlemen, these results are due to good
feeding. When I am gone, you may be at a loss for an
epitaph for me. I give it to you in these words: He fed
fevers’’.
Florence Nightingale, following her experiences in the
Crimea, wrote in her Notes on Nursing in 1859: ‘‘Every careful
observer of the sick will agree in this, that thousands of
patients are annually starved in the midst of plenty from want
of attention to the ways which alone make it possible for them
to take food. . I would say to the nurse, have a rule of thought
about your patient’s diet; consider, remember how much he
has had and how much he ought to have today’’.
The thread running through all these pronouncements is
the notion of our duty and obligation to do no harm to our
patients either actively or by passive neglect and to do good
by providing nutrition and fluids. Today we have a wealth of
techniques at our disposal for delivering adequate nutrition
orally, enterally and parenterally. We also have sophisti-
cated and expensive life support systems. Despite this there
remains in most health care systems a gap between knowl-
edge and practice which carries clinical and economic
consequences. It may also, however, have ethical and legal
implications. The more evidence that accumulates that
malnutrition impairs outcome and nutritional care can
improve it, the more it becomes apparent that failure ‘‘to
consider these things’’, as Hippocrates put it, is not only
a failure of our duty to do good and avoid doing harm, but may
well be construed as negligence and lay us open to action in
the courts. Here we need to separate the concept of basic
care from nutrition by artificial means. Basic care has been
e299
defined legally as a right and consists in the provision of
adequate fluid and nutrients by mouth for all our patients, as
well as help where necessary with drinking and eating. This
professional duty continues as long as a patient can swallow
and there is no medical contraindication to taking fluid and
food by mouth. On the other hand, the highest legal
authorities have defined parenteral and enteral feeding by
tube as medical treatment, not basic care, although some
paediatricians have argued that, in the case of the neonate,
tube feeding should be regarded as basic care. Our de-
monstrable failure to provide adequate basic care with food
and drink in many cases e and studies have demonstrated this
e falls short of our legal obligations as well as professional
standards. In some cases also the failure to provide artificial
nutrition in a situation where there is clear evidence of
potential benefit could also be construed as negligent and
legally culpable. In contrast, where there is evidence of
potential harm or obvious futility, the physician is on safe
ground both ethically and legally in not introducing or even
withdrawing treatment. A legal judgement, quoted in the
Journal of Medical Ethics, expressed it thus: ‘‘Medical
science and technology has advanced for a fundamental
purpose: the purpose of benefiting the life and health of
those who turn to medicine to be healed. It surely was never
intended that it be used to prolong biological life in patients
bereft of the prospect of returning to an even limited
exercise of human life.’’ Here the legal, ethical and religious
views converge. The Roman Catholic and Orthodox Jewish
views, which are commonly and erroneously supposed to
favour preservation of life at all costs, are clear. The Roman
Catholic position is that there should be a presumption in
favour of providing nutrition and hydration to all patients,
including patients who require medically assisted nutrition
and hydration provided that it is of sufficient benefit to
outweigh the burdens involved to the patient. Father Paris,
a Jesuit priest and a professor of medical ethics has argued
that preventing doctors withdrawing future treatment is
unethical since it would discourage trials of treatment where
benefit is initially in doubt. This view allows the concept of
planned and limited trials of treatment, undertaken after
full discussion with all concerned; with agreed goals and
grounds for withdrawal should the treatment be ineffective.
The legal view is that withholding and withdrawing treat-
ment are the same, and that decisions concerning these must
be based on consideration of patient benefit, not on what is
convenient or expedient. Orthodox Jewish thinkers regard
the dying person in a special light, and argue against
‘‘impediments to dying in the final year of life’’. There are,
however, differences between religious and legal views
concerning, for example, the notion of brainstem death.
When religious principle conflicts with medical opinion,
however, legal judgements have ruled that personal opinion
cannot override published policy, that a doctor cannot be
compelled to treat against the dictates of professional
conscience, especially when he or she acts according to
a widely held professional view (Bolam principle).
Autonomy
Autonomy was embodied in the Nuremberg Code following
the Second World War for well-known reasons. The notion
e300
that patients needed protection from unethical experimen-
tation or evil intent by the physician would have been
abhorrent to our ancestors. Nonetheless, the concept of
autonomy or self-determination was further confirmed in
the Helsinki Declaration and International Covenant on Civil
and Political Rights. The competent patient, therefore, has
the legal right to refuse treatment. In the UK the British
Medial Association and the Law Society have published clear
guidelines on the assessment of mental capacity.
A person should be able to
e understand in simple language what the medical treat-
ment (or research intervention) is, its purpose and
nature and why it is proposed
e understand its principal benefits, risks and alternatives
e understand in broad terms what will be the conse-
quences of not receiving the proposed treatment
e retain the information for long enough to make an
effective decision
e make a free choice (without pressure).
The process of communicating these may sometimes be
difficult, but doctors should not be tempted to underesti-
mate the patient’s capacity to make a decision. Every
attempt should be made to help this process.
The position of the incompetent adult is more difficult.
Advance directives or living wills should be respected and
will increasingly have the force of law in western countries.
I always ask relatives whether the patient has ever ex-
pressed a view verbally. The views of the family must be re-
spected, although in the UK this does not have the force of
law. We always approach them saying that ‘‘if this were
myself or a member of my own family, what would I want
done?’’. Conversely, doctors are not obliged to submit to
pressure to give futile treatment. Most importantly, deci-
sions should be shared by all the members of the team
and other colleagues asked for advice where appropriate.
Using these principles, I cannot recall an occasion when
conflict arose.
We are all influenced by our own personal experi-
ences. I recall a patient that was dying from heart
disease but with unimpaired cognitive function. They
stopped eating and drinking and when they were pressed
to eat, they said, ‘‘don’t be so unkind’’. With the best
intentions, therefore we may try to do well, but unless it
accords with the patient’s wishes, we may be behaving
unethically. There are specific instances, however, where
force is legal and even ethical. In some countries force
feeding of prisoners is legal, in others not. Patients at
risk from dying from malnutrition due to anorexia nervosa
fall within the meaning of the UK Mental Health Act and
may be force-fed. Interestingly, the mass child murderer,
Brady, who recently went on hunger strike in the UK, was
force-fed on the order of the High Court, not on the basis
that he was a prisoner, but on the grounds of mental
illness.
Special situations
Some of the most difficult decisions in nutritional support
concern malignant and neurological disease.
S.P. Allison
Malignant disease
We would none of us have any difficulty, I think, in
providing nutritional support for cancer patients to aid
cure or significant remission. Similarly, in some cases of
terminal cancer obstructing the upper GI tract, enteral
feeding may have a useful palliative and supportive role.
One of our patients aged 45 with an obstructing and
inoperable carcinoma of the stomach was enabled, with
the use of a feeding jejunostomy, to remain reasonably
well, return to work for two months, and be with his family
for four months, at the end of which he died rapidly and
peacefully. In contrast, a recent Italian study showed that
TPN in terminal cancer patients offered little benefit and
exposed patients to additional burden. In the interest,
therefore, of beneficence and non-maleficence as well as
justice, TPN in most cases of terminal cancer is unjustified.
Motor neurone disease (MND)
In this condition, muscles are paralysed but cognition
remains. In a two year follow up of all newly diagnosed
cases of MND, we found that only 25% benefited from
percutaneous endoscopic gastrostomy (PEG feeding) and
these were mainly patients with predominantly bulbar
features and late loss of limb function. Two patients who
did not benefit, clearly submitted to pressure from their
families to consent to treatment, which has made us very
careful in our selection of patients for treatment, and
strengthened us in our resistance to providing it when we
know is will give no benefit.
Dementia
A recent review by Gillick has reminded us that eating and
drinking are the last functions to be lost in this fatal
condition and that the loss of these functions heralds
death. The capacity to experience hunger and thirst is
lost. Several studies have also shown no benefit in terms of
survival, quality of life, reflux or pneumonia from artificial
nutritional support in advanced dementia. Indeed, an
added burden is imposed by the complications of treat-
ment. Compassionate care with sips of fluid and mouth
toilet should mark the limit of our intervention.
Stroke
The boundaries have yet to be defined, but there is a worrying
tendency to use PEGs for convenience of management rather
than true need and benefit. We need to define more clearly
the indications for artificial feeding in stroke. In any case,
treatment should be conducted in the context of a unit
expert in the management of this condition.
Persistent vegetative state
The Cuzan case in the United States and the Tony Bland
case in the UK gave rise to much publicity and debate but
were helpful in defining, for doctors, the law in respect of
withholding or withdrawing treatment in this fortunately
uncommon state, in which all features of personhood are
Ethical and legal aspects
lost although brainstem function persists. This is perhaps
the one condition which should be referred to the courts for
a ruling. Because of the difficulties of early diagnosis,
courts will not entertain an application for permission to
withdraw treatment within 12 months of onset of the
condition. Secondly, courts will only pronounce on the
legality of withdrawing treatment, effectively saying to the
doctors that it would not be against the law to withdraw
treatment if this is in the best interests of the patient,
leaving them to decide the issues of benefit and burden.
Justice
The growth in demand for health care and the escalation of
treatment technology faces all societies with the problem
of satisfying infinite demand with finite resources. This
increasingly presents doctors with conflicts between
beneficence and justice. An expensive but marginally
effective treatment provided to one patient may reduce
the resources in money, staff and equipment available to
treat another patient who might benefit more. Whether we
like it or not, therefore, physicians, while having a primary
duty to the patient, have a duty to husband resources and
use them effectively. It is preferable that such matters be
influenced by us than by insurance companies or politi-
cians, but we must think carefully about this issue. In her
Presidential Address to ASPEN, Virginia Hermann quotes an
article in the Wall Street Journal by a non-medical director
of a health care data-analysis and research firm, who
wrote: ‘‘A healthy patient is a unit of production, and for
all the units of production, there is an optimal production
function which can be calculated.’’ Two years ago I
received a letter from an administrator, suggesting that
my practice should be in accord with the business plan of
the Hospital Trust. Such depersonalisation should make us
shudder and reminds one of the subordination of doctors
and other professionals to serve malignant political
systems. There is a fine line to be drawn here and we
should be wary of allowing ourselves to drift across it at the
behest of politicians and businessmen whose agenda is
different to our own.
Overtly or not, each society has some form of health
rationing. In the United States it is by ability to pay. The
system in the UK National Health Service pretends that all
patients are covered equally for optimal care, while ration-
ing is applied by growing waiting lists. A more honest attempt
at providing health care equitably was made by the State of
Oregon. They first decided the question, which should be
covered by Medicare and Medicaid funding from taxes and
voted that all should be covered. They then addressed the
question: ‘‘What should be covered?’’ and appointed expert
committees to gather the latest and best evidence on health
technologies and their cost. Then by wide consultation in
society, with town hall meetings and input from all groups in
society, health priorities were ranked in a way which
reflected the public will. Lastly the legislatures were asked
to vote a budget which effectively drew a line in the list of
priorities below which the remaining technologies would not
be funded. The legislature was not allowed to alter the order
of priorities which the public had decided. The priority list
and the budget were then subject to monitoring and annual
review, so that anomalies could be corrected. This process
e301
gave rise to some very emotive conflicts, for example,
a young boy with leukaemia was denied funding for a bone
marrow transplant. The same sum of money provided
antenatal care for 1500 poor mothers.
These considerations make it all the more important
that our PEN societies should support research and clinical
trials to enlarge the evidence for our own technology. We
should be very clear about who benefits and who does not.
We should define what harm may be done, e.g. high
complication rates in parenteral nutrition conducted by
inexpert staff, or the worse outcome shown in the Veterans
Administration trial, when perioperative TPN is given to
those without prior malnutrition. In our own unit, we have
kept careful records since 1983 and were able to conduct
an audit of patients who received TPN for acute gastroin-
testinal failure for an average of 50 days. We argued that
survival for this length of time without feeding would have
been very unlikely without TPN, which can be regarded as
the treatment of acute gastrointestinal failure. Seventy-
five percent of patients with benign disease were alive 10
years later. Although, therefore, an average 50 days of TPN
was costly, the resulting survival and cost per year of life
saved of £ 4700, justified the treatment as comparable in
effectiveness and cost to other well-accepted technolo-
gies. Similar data in terms of longevity and life quality
has been produced, justifying the selective use of long-
term home parenteral nutrition.
‘‘Considering these things’’, I have drawn up a list
summarising some of the main ethical and legal aspects of
nutritional support. Poets have the ability to distil truth into
a few telling words. The poet James Kirkup, after witnessing
my father carry out a mitral valvotomy in 1951, wrote a poem
‘‘A correct compassion’’ which is published in the Oxford
Book of Twentieth Century Verse. In the last verse, he wrote:
‘‘For this is imaginations other place
Where only necessary things are done, with the supreme
and grave
Dexterity that ignores technique, with proper grace
Informing a correct compassion that performs it love
and makes it live.’’
James Kirkup, 1951
Summary
Ethical and legal considerations increasingly influence
clinical decisions.
e Increased complexity of decisions in our technical and
medico-legal climate in which the patient is better
informed.
e The physician’s first duty is to the patient (beneficence,
non-maleficence) but he or she also has a duty to soci-
ety (Justice).
e It is the responsibility of society as a whole to decide
what resources are to be devoted to health care after
full and public discussion and consultation.
e The patient’s autonomy must be respected but no physi-
cian can be forced to undertake treatment that is futile
or that he or she considers against the patient’s interest.
e302
e The interest of the individual must however be pro-
tected against arbitrary action or decisions by govern-
ment, purchasing bodies, insurance companies or
individuals by a Bill of Rights which is safeguarded by
the courts acting independently of government.
e Care of the sick entails the basic duty of providing ad-
equate and appropriate fluid and nutrients by mouth.
e As long as a patient can swallow and expresses a desire
or willingness to drink or eat, fluid and nutrients should
be given provided that there is no medical contraindi-
cation. This is basic care. Artificial feeding by tube or
by vein is a medical treatment.
e A treatment plan for any patient should include provi-
sion for fluid and nutrition. Health carers should work
as a team.
e If the plan is to maintain an adequate intake the ethical
duty is to provide this, with the patient’s consent,
orally or by artificial means.
e If the illness is terminal, religious, ethical and legal
authorities consider that compassionate care should
include only measures to ensure comfort. Prolongation
of misery or dying by burdensome technology is
unethical.
e Fluid or food given by tube enterally or parenterally is
legally medical treatment and not basic care.
e For an incompetent adult, the doctor is responsible in
law for doing what is in the patient’s best interests.
He should seek to ascertain the previously expressed
views of the patient, consulting the other members of
the team and family. The legal position of living wills
and the family varies between countries.
e Special considerations apply regarding the responsibil-
ity of parents to make a decision on behalf of their child
and consent for the treatment by adolescents.
e Application to the court should be made regarding the
legality of withdrawing artificial hydration and nutrition
from a patient in a vegetative state.
e Under carefully specified circumstances, it can be legal
to enforce nutritional treatment on an unwilling pa-
tient, e.g. anorexia nervosa or hunger strikers.
S.P. Allison
e It could be construed as unethical not to be able to con-
duct a time-limited trial of treatment for fear of being
unable to withdraw it if it proves of no benefit.
e When tube feeding is continued outside hospital, there
is an ethical duty to ensure that the patient, daily
carers and the community health team are adequately
instructed in the technique and possible complications.
Conflict of interest
There is no conflict of interest.
Further reading
1. Allison SP. The uses and limitations of nutritional support. Clin
Nutr 1992;11:319.
2. Lennard-Jones JE. BAPEN report. Ethical and legal aspects of
clinical hydration and nutritional support;, ISBN 1 899467 25
4; 1988. Available from BAPEN, PO Box 922, Maidenhead,
Berks, SL6 4SH.
3. Dixon J, Welch HG. Priority setting: lessons from Oregon. Lan-
cet 1991;337:891.
4. Gillick M. Rethinking the role of tube feeding in patients with
advanced dementia. NEJM 2000;342:206.
5. Herrmann VM. Nutrition support: ethical or expedient and who
will choose? Presidential Address to ASPEN. JPEN 1999;23:195.
6. Kitzhaber JA. Prioritising health services in an era of limits: the
Oregon experience. Lancet 1993;307:373.
7. Macfie J. Ethical and legal considerations in the provision of
nutritional support to the perioperative patient. Curr Opin
Clin Nutr Metab Care 2000;3:23.
8. Messing B, Landais P, Goldfarb B, Irving M. Home parenteral nutri-
tion in adults: a multicentre survey in Europe. Clin Nutr 1989;8:3.
9. O’Hanrahan T, Irving MH. The role of home parenteral nutrition
in the management of intestinal failure e report of 400 cases.
Clin Nutr 1992;11:331.
10. Shields PL, Field J, Rawlings J, Kendall J, Allison SP. Long-term
outcome and cost-effectiveness of parenteral nutrition for
acute gastrointestinal failure. Clin Nutr 1996;15:64.