ETHICAL GUIDELINES for PEG INSERTION

PEG feeding should be considered for any patient who is unable to meet his/her
nutritional requirements via the oral route and who is likely to require artificial
nutritional support for at least four weeks.
Clinical situations in which these conditions may apply can be divided into the
following broad categories:

CATEGORIES
A. Mechanical dysphagia due to obstruction to the upper aero-digestive tract (e.g.
head and neck cancer)
B. Neurological dysphagia, where there is the prospect of recovery from the
underlying disease (e.g. many acute strokes)
C. Inability to eat due to global neurological damage, where there is the prospect
of recovery from the underlying disease (e.g. brain injury, reversible coma)
D. Where there is no problem with eating but nutritional requirements are
increased due to malabsorption (e.g. cystic fibrosis, Crohns disease)
E. Where there is no malabsorption or dysphagia but chronic disease is causing
weight loss due to loss of appetite and/or increased catabolism (e.g chronic
renal failure)
F. Neurological dysphagia, where the cause is a progressive neurological
disorder without prospect of recovery (e.g. Motor Neurone Disease)
G. Inability to eat due to severe global neurological damage, where there is no
prospect of recovery from the underlying disease (e.g. minimally responsive
state, severe stroke)
H. Inability to eat due to severe dementia
I. Where there is refusal to eat because of a psychiatric disorder (e.g. depression
or anorexia nervosa)

RECOMMENDATIONS
Categories A D

PEG should be recommended UNLESS:

i) Prognosis is so poor that survival beyond a few weeks is unlikely

In the terminal stages of a patients life, the burden of PEG insertion usually
outweighs any benefit. Loss of desire for food is a natural part of the dying
process and there is no evidence that providing nutrition in this situation
improves patients well-being. Similarly PEG tube should not be placed for the
purpose of administering fluid or medication to a patient in whom death is
inevitable in the short-term.
ii) The patient refuses treatment and is legally competent to do so
The wishes of a competent patient should always be respected. The basic
requirements indicating competence are given in Appendix A. Competence
should allows be assumed unless the contrary is proven.
iii) The patient has lost the capacity to make a decision, but has made a valid, clear
and unambiguous advance directive that artificial nutrition be withheld
The conditions required for an advance directive to be valid are given in
Appendix B.
iv) The patient has lost the capacity to make a decision, but PEG feeding would
prolong a life that is demonstrably awful due to pain and distress
Where the wishes of the patient are unknown and death is not imminent,
artificial nutrition may be withheld in some circumstances but see Safeguard
procedures described below.
Category E

PEG not usually indicated, except in particular circumstances.

In some chronic disease states the nutritional deficit is due to alterations in
intermediate metabolism that are refractory to nutritional therapy (the
anorexia-cachexia syndrome). PEG feeding is futile in these situations.
Where anorexia is less profound, the loss of appetite can often be overcome by
appropriate dietary manipulation and appetite enhancers. If appetite is likely to
improve within 4-6 weeks, short-term NG feeing may be appropriate.
PEG feeding has been shown to be of benefit in a few specific chronic
conditions, most notably renal failure patients on dialysis.
Cases falling into category E should be discussed with a nutrition team before
PEG is mentioned to the patient or family.

Category F

PEG may be offered but without strong recommendation.

PEG should be discussed with the patient or carer, pointing out that the
evidence of clinical benefit is lacking in many conditions in this category. In
particular, the risk of aspiration, although lessened, is not abolished. The
wishes of a competent patient should be accepted.
If the patient is not competent to make the decision, the doctor must act in
what (s)he believes to be the patients best interest. In determining this, (s)he
should take into consideration the views of the family/carers regarding the
patients wishes, although family/carers do not have the right to refuse or
consent to PEG on the patients behalf.
The issue of PEG placement should be discussed early in the course of
progressive neurological disease. Patients with MND probably derive little
benefit if the procedure is delayed until respiratory function (FVC) has
declined to less than 50% of baseline.

Category G

A trial of PEG feeding may be considered.

In situations where severe neurological disease has resulted in total or near
total loss of awareness and there is no realistic prospect of improvement, the
concept of quality of life loses its meaning.
Recognition that the patient is in this state requires skilled multidisciplinary
assessment.
In many such cases the patients condition is so poor that death is inevitable
whatever treatment is provided. In these circumstances PEG is contraindicated
for reasons outlined above.
If the patients condition has stabilised, the only purpose of PEG feeding is to
maintain life and organ function. This is not necessarily in the patients best
interests, as recognised by law, and in some circumstances the doctor may be
justified in withholding PEG feeding (but see Safeguard procedures
described below).
In view of the uncertainty of medical prognosis, a trial of PEG feeding may be
appropriate to allow time for further assessment. This should be undertaken
for a predetermined period with prearranged review and the nature and
purpose of the trial should be made unambiguously clear at the outset to all
those involved in the patients care and, where appropriate, the relatives.

Category H

PEG placement not usually indicated.

PEG placement should be a regarded as a medical treatment and not part of
basic care. Like all other medical interventions it should not be undertaken
unless there is EVIDENCE OF BENEFIT and a clear OBJECTIVE.
Current evidence has failed to demonstrate benefit from gastrostomy feeding
in terms of prolongation of life or increased comfort in patients with severe
dementia. PEG insertion cannot therefore be justified with these objectives in
mind (but see Safeguard procedures described below).
Where the dementia itself is not the primary cause of eating difficulty (e.g. the
patient with dementia who has had a stroke), considerations described under
the relevant category should apply, but in all cases it should be remembered
that dementia is a terminal disease and the burden of PEG placement may
outweigh its benefits.
Patients with dementia may occasionally be considered for PEG placement to
achieve objectives other than those given above (e.g. healing pressure sores
that are worsening quality of life). In such cases the decision should be based
on assessment by a multidisciplinary team.

Category I

PEG placement best avoided.

Patients who refuse to eat due to a psychiatric disorder will usually also refuse
tube feeding and their autonomy should be respected (unless they are being
treated for anorexia nervosa under the provision of the Mental Health Act,
1983).
Occasionally, tube feeding is accepted as an alternative to eating but such
patients are often manipulative and PEG placement is best avoided as it simply
shifts the focus of attention from food to issues concerning PEG function.
Nasogastric tube feeding may be enforced under the Mental Health Act for
anorexia nervosa but this is usually a temporary measure and the question of
PEG insertion rarely arises.

SAFEGUARD PROCEDURES
Whenever consideration is given to withholding PEG feeding from a patient in
whom death is not imminent, it is recommended that the proposal should be
subject to formal clinical review by a senior clinician who has experience of the
condition from which the patient is suffering and who is not part of the treating
team.
Where the decision not to treat is supported, details of the case and any
discussions that have taken place should be fully documented. The reasons for the

decision should be set out clearly in the case notes so that they are available for
subsequent review if necessary.
APPENDIX A
Basic Requirements for Competence
To be regarded as competent to make a decision regarding treatment, a patient must be
able to comprehend and retain information which is material to that decision.
Specifically, they must be able to understand the likely consequences of accepting or
refusing the treatment in question.
Furthermore, they must be able to use the information and weigh it in the balance as
part of the process of arriving at a decision.
APPENDIX B
Requirements for a Valid Advance Directive

The patient must have been competent when the advance directive was drawn up

They must have been acting free from pressure

They must have been offered sufficient, accurate information to make an

informed decision

It should be clear that the patient had envisaged the type of situation which has
subsequently arisen and for which the advance directive is being invoked

A valid advance refusal of treatment has the same legal authority as a

contemporaneous refusal and legal action could be taken against a doctor who
provides treatment in face of a valid refusal.

REFERENCES:
Withholding or Withdrawing Life-prolonging Medical Treatment. British Medical
Association. BMJ Books 1999
Ethical and Legal Aspects of Clinical Hydration and Nutritional Support. ed LennardJones, JE. BAPEN 1998
Gillick MR. Rethinking the Role of Tube Feeding in Patients with Advanced
Dementia. NEJM 2000; 342: 206-10
Finucane TE, Bynum JPW. Use of tube feeding to prevent aspiration pneumonia.
Lancet 1996; 348: 1421-24
Rabeneck L, McCullough LB, Wray NP. Ethically justified, clinically comprehensive
guidelines for percutaneous endoscopic gastrostomy tube placement. Lancet 1997;
349: 496-98

Dr Paul OToole
January 2004