Withholding and Withdrawing Life-prolonging Treatments: Good Practice in
develops the advice in Good Medical Practice and Seeking Patients'
Consent: The Ethical Considerations. It sets out the
standards of practice expected of doctors when they consider whether to
withhold or withdraw life-prolonging treatments.
1. Doctors have a
responsibility to make the care of their patients their first concern. This
is essential when considering any of the growing range of life-prolonging
treatments which make it possible to extend the lives of patients who,
through organ failure or other life-threatening conditions, might otherwise
2. The benefits of
modern techniques such as cardiopulmonary resuscitation, renal dialysis,
artificial ventilation, and
artificial nutrition and hydration, are considerable. However, life has
a natural end and the existence of such techniques presents doctors,
patients and their families with dilemmas.
3. Dilemmas arise
where, for example, advanced techniques of life support may be able, in some
cases where patients are in a permanent vegetative state or similar
condition, to sustain life artificially for many years with little or no
hope of recovery. In other cases, they may simply prolong the dying process
and cause unnecessary distress to the patient. In these instances the
question arises as to whether it is in the best interests of the patient to
start or continue the treatment. Reaching a satisfactory answer may mean
addressing a number of difficult ethical and legal issues.
4. The main questions
that arise are:
Whether the ethical
principle requiring doctors to show respect for human life would mean that
doctors should offer all means at their disposal to prolong a patient's
life? Or would it allow for the possibility of withholding or withdrawing
a life-prolonging treatment?
circumstances in which withholding or withdrawing life-prolonging
treatment would be unlawful?
What are the
responsibilities in the decision-making process of the patient, doctor,
healthcare team, family members and other people who are close to the
patient? And what weight should be given to their views?
5. These issues have
caused considerable debate amongst the profession, public and in the courts,
highlighting a number of concerns within the wider community. These include
the possibility of
over- or under-treatment towards the end of life;
concerns that some
doctors may make decisions about life-prolonging treatments without access
to up to date clinical advice; and
concerns that doctors
may make judgements about the appropriateness of treatment (or
non-treatment) on a quality of life basis regarding patients, particularly
the very young or very old, which patients or society as a whole may not
It is also clear that
the profession and patients want more guidance on what is considered
ethically and legally permissible in this area; and that patients and their
families want greater involvement in making these decisions2,
with better arrangements to support them when facing these distressing
6. The guidance which
follows first sets out a number of guiding principles (Part 1: paragraphs
9-30), and then provides a framework for putting the principles into
practice (Part 2: paragraphs 32-95) when doctors are faced with making a
decision whether to withhold or withdraw a life-prolonging treatment. It
includes advice about the need to ensure that there is proper care for dying
patients, and that their families and others close to them are involved in
that care where appropriate.
7. The guidance is based
on long established ethical principles which include doctors' obligations to
show respect for human life; protect the health of their patients; and to
make their patients' best interests their first concern (as outlined in
paragraph 9). It takes account of those areas of broad consensus so far
established within the Council, the medical profession and the public about
what can be regarded as good practice in applying the principles to
decisions about life-prolonging treatment.
8. Good practice also
encompasses doctors' obligation to work within the law. The guidance takes
account of law affecting practice in this area, in particular the law
prohibiting killing (including euthanasia) and assisted suicide. A brief
summary of the current legal background against which decisions should be
made about withholding or withdrawing treatment is provided at Appendix A.
However, it is not intended as a substitute for up to date legal advice in
individual cases. So wherever there is uncertainty about how a particular
decision might be viewed in law, legal advice must be sought, for example
from a medical defence body or employer's solicitor.
Part 1: Guiding
Respect for human life
and best interests
9. Doctors have an
ethical obligation to show respect for human life; protect the health of
their patients; and to make their patients' best interests their first
concern. This means offering those treatments where the possible benefits
outweigh any burdens or risks associated with the treatment, and avoiding
those treatments where there is no net benefit to the patient.
10. Benefits and burdens
for the patient are not always limited to purely medical considerations, and
doctors should be careful, particularly when dealing with patients who
cannot make decisions for themselves, to take account of all the other
factors relevant to the circumstances of the particular patient. It may be
very difficult to arrive at a view about the preferences of patients who
cannot decide for themselves, and doctors must not simply substitute their
own values or those of the people consulted.
11. Prolonging life will
usually be in the best interests of a patient, provided that the treatment
is not considered to be excessively burdensome or disproportionate in
relation to the expected benefits. Not continuing or not starting a
potentially life-prolonging treatment is in the best interests of a patient
when it would provide no net benefit to the patient. In cases of acute
critical illness where the outcome of treatment is unclear, as for some
patients who require intensive care, survival from the acute crisis would be
regarded as being in the patient's best interests.
End of natural life
12. Life has a natural
end, and doctors and others caring for a patient need to recognise that the
point may come in the progression of a patient's condition where death is
drawing near. In these circumstances doctors should not strive to prolong
the dying process with no regard to the patient's wishes, where known, or an
up to date assessment of the benefits and burdens of treatment or
Adult patients who can
decide for themselves
13. Adult competent3
patients have the right to decide how much weight to attach to the benefits,
burdens, risks, and the overall acceptability of any treatment. They have
the right to refuse4
treatment even where refusal may result in harm to themselves or in their
own death, and doctors are legally bound to respect their decision5.
Adult patients who have the capacity to make their own decision can express
their wishes about future treatment in an advance statement.
Adult patients who
cannot decide for themselves
14. Any valid advance
refusal of treatment - one made when the patient was competent and on the
basis of adequate information about the implications of his/her choice - is
legally binding and must be respected where it is clearly applicable to the
patient's present circumstances and where there is no reason to believe that
the patient had changed his/her mind.
15. Where adult patients
lack capacity to decide for themselves, an assessment of the benefits,
burdens and risks, and the acceptability of proposed treatment must be made
on their behalf by the doctor, taking account of their wishes, where they
are known. Where a patient's wishes are not known it is the doctor's
responsibility to decide what is in the patient's best interests. However,
this cannot be done effectively without information about the patient which
those close to the patient6
will be best placed to know. Doctors practising in Scotland need
additionally to take account of the Scottish legal framework for making
decisions on behalf of adults with incapacity7.
options: difference of view about best interests
16. Applying these
principles may result in different decisions in each case, since patients'
assessments of the likely benefits and burdens or risks, and what weight or
priority to give to these, will differ according to patients' different
values, beliefs and priorities. Doctors must take account of patients'
preferences when providing treatment. However, where a patient wishes to
have a treatment that - in the doctor's considered view - is not clinically
indicated, there is no ethical or legal obligation on the doctor to provide
it. Where requested, patients' right to a second opinion should be
17. Where a patient
lacks capacity to decide, the doctor, health care team or those close to the
patient involved in making the decision, may reach different conclusions
about the patient's preferences and what course of action might be in the
patient's best interests. In these cases it is important to take time to try
to reach a consensus about treatment and it may be appropriate to seek a
second opinion, or other independent or informal review.
18. In the rare
circumstances where any significant disagreement about best interests cannot
be resolved, legal advice should be sought on whether it is necessary to
apply to the court for a ruling. Doctors practising in Scotland would need
to take account of the statutory procedures for resolving disagreements.
Concerns about starting
then stopping treatment
19. Although it may be
more difficult for the health care team, and those close to the patient, to
withdraw a treatment from a patient rather than to decide not to provide a
treatment in the first place, this should not be used as a reason for
failing to initiate a treatment which may be of some benefit to the patient.
Where it has been decided that a treatment is not in the best interests of
the patient, there is no ethical or legal obligation to provide it and
therefore no need to make a distinction between not starting the treatment
and withdrawing it.
20. Where patients lack
capacity to make decisions about treatment, and there is a reasonable degree
of uncertainty about the appropriateness of providing a particular
treatment, treatment which may be of some benefit to the patient should be
started until a clearer assessment can be made. It must be explained clearly
to all those involved in caring for the patient that the treatment will be
reviewed, and may be withdrawn at a later stage, if it is proving to be
ineffective or too burdensome for the patient.
21. This is particularly
important where time is needed for consultation and a more detailed
assessment, in emergencies, and also where there is doubt about the severity
of a condition, the likelihood of recovery, or the ability of a particular
treatment to benefit the patient. In these cases patients, their families
and carers should be reassured that symptom assessment and relief and
would always be provided, whatever decision is made about particular
Artificial nutrition and
22. Decisions involving
artificial nutrition or hydration10
may be particularly difficult and/or contentious. In part this is because
the benefits and burdens of either nutrition or hydration may not be well
known and involve difficult assessments of the patient. For example,
patients in the later stages of a progressive or severely disabling
condition, where their body systems begin to shut down, may increasingly
lose interest in food or drink. For some patients not taking nutrition or
hydration may be part of the natural dying process. Problems in making
assessments can arise because some patients may under-report their symptoms,
while perceptions may differ between doctors, members of the health care
team and those close to a patient, about the presence or severity of
symptoms such as pain.
23. In the face of such
uncertainties, there may be concern about the possibility that a patient who
is unconscious or semi-conscious, and whose wishes cannot be determined,
might experience distressing symptoms and complications or otherwise be
suffering, because their needs for nutrition or hydration are not being met.
Alternatively there may be concern that attempts to meet the patient's needs
may cause avoidable suffering. For some people there may be emotional
difficulties in deciding not to provide what they see as basic nurture for
24. In view of these
considerations, it is essential that doctors ensure that those involved in
making the decision are provided with clear and up to date information about
what is known of the benefits, burdens and risks of providing nutrition and
hydration through artificial means, and information about the basis on which
the particular patient's needs have been assessed. It is also essential that
doctors making decisions about artificial nutrition and hydration take
careful account of the principles of good practice set out in this guidance
(see also advice at paragraphs 78-83).
25. Doctors have a duty
to give priority to patients on the basis of clinical need, while seeking to
make the best use of resources using up to date evidence about the clinical
efficacy of treatments. Doctors must not allow their views about, for
example, a patient's age, disability, race, colour, culture, beliefs,
sexuality, gender, lifestyle, social or economic status to prejudice the
choices of treatment offered or the general standard of care provided.
Care for the dying
26. Patients who are
dying should be afforded the same respect and standard of care as all other
patients. Patients and their families and others close to them should be
treated with understanding and compassion. Where the likely progression of a
patient's condition is known, and their death is seen as an inevitable
outcome, it is important to ensure that the patient's palliative care or
terminal care needs are identified and met appropriately. This should
include consideration of their wishes regarding such matters as the
appropriate place for receiving care (which may affect the treatment options
available), and their needs for religious, spiritual or other personal
support. Every attempt should be made to ensure that they are afforded
privacy, dignity, and good quality care in comfortable surroundings. This
includes assessment of, and adequate relief from, pain and other distressing
symptoms, and appropriate support and nursing care.
27. Discussion about the
dying process allows patients the opportunity they may want to decide what
arrangements should be made to manage the final stages of their illness, and
to attend to personal and other concerns that they consider important
towards the end of their life11.
28. Where a decision to
withhold or withdraw life-prolonging treatment has been made by a competent
adult patient, or made by the senior clinician responsible for the care of a
patient who lacks capacity to decide (following discussions with those close
to the patient and the health care team) doctors who have a conscientious
objection to the decision may withdraw from the care of that patient. In
doing so they must ensure, without delay, that arrangements have been made
for another suitably qualified colleague to take over their role, so that
the patient's care does not suffer.
29. Junior doctors in
this position must make their conscientious objection known to the doctor
responsible for the patient's care who should then ensure that arrangements
are made for another colleague to take over from the junior doctor.
30. Doctors are
responsible to their patients and society at large, while being individually
accountable to the GMC and in the courts for their decisions about
withholding and withdrawing life-prolonging treatments.
Part 2: Good practice
31. The guidance which
follows provides a framework for putting the principles into practice in
reaching, implementing and reviewing decisions on withholding or withdrawing
life-prolonging treatments. It identifies other sources of advice where
these are known.
32. If you are the
consultant or general practitioner in charge of a patient's care, it is your
responsibility to make the decision about whether to withhold or withdraw a
life-prolonging treatment, taking account of the views of the patient or
those close to the patient as set out in paragraphs 41-48 and 53-57.
Exceptionally, in an emergency where the senior clinician cannot be
contacted in time, if you are an appropriately experienced junior hospital
doctor or deputising general practitioner you may take responsibility for
making the decision, but it must be discussed with the senior clinician as
soon as possible.
Diagnosis and prognosis
33. Before a decision is
made to withhold or withdraw treatment, as the treating doctor you must
carry out a thorough assessment of the patient's condition and the likely
prognosis, taking account of current guidance on good clinical practice and
the views and assessments of the clinical team.
34. Where there is
significant disagreement within the clinical team, you must do your best to
resolve it and to ensure clarity and consistency in the information provided
to the patient or those close to the patient.
35. You should always
give consideration to seeking a second opinion. You must seek a second
opinion in cases where you are not sufficiently experienced or
knowledgeable, or where there is significant disagreement within the team
about clinical aspects of a patient's care. In life threatening emergencies,
where seeking a second opinion is not possible, follow the guidance at
Options for treatment
36. You must identify
appropriate treatment options based on up to date clinical evidence about
efficacy, side effects and other risks, referring to any relevant clinical
guidelines on the treatment and management of the patient's condition, or of
patients with similar underlying risk factors.
37. You must reach a
considered judgement on the likely clinical and personal benefits, burdens
and risks, for the particular patient, of each of the treatment (or
non-treatment) options identified.
38. Always consult a
clinician with relevant experience (who may be from another discipline such
as nursing) in cases where:
You and the health
care team have limited experience of a condition.
You are in doubt about
the range of options, or the benefits, burdens and risks of a particular
option for the individual patient.
You are considering
withholding or withdrawing artificial nutrition or hydration from a
patient who is not imminently dying, although in a very serious condition,
and whose views cannot be determined (see paragraph 81 below).
You and other members
of the health care team have a serious difference of opinion about the
appropriate options for a patient's care.
limited information about the patient
39. A life-threatening
emergency might arise where you and the healthcare team have no previous
knowledge of, or inadequate information about, the patient's medical history
or wishes regarding treatment, and where any delay might prejudice the
outcome. In these circumstances you may consider that it is not possible to
obtain all relevant information or hold any consultations - as outlined in
this guidance - before making a decision.
40. In deciding whether
to withhold or withdraw a particular treatment you must respect the terms of
any valid and applicable advance refusal that is in the patient's notes or
is drawn to your attention. Otherwise you must make a considered judgement
about the patient's best interests. Where there is a reasonable degree of
uncertainty about the appropriateness of any treatment, you should follow
the advice at paragraph 20 above. You should give a clear explanation of the
reasons for your decisions to the patient where they recover sufficiently to
understand or - if the patient does not recover - to those close to the
options: patients who can decide for themselves
Seeking the patient's
41. Where a patient has
the capacity to decide, you must raise with the patient the need to discuss
your conclusions about diagnosis, prognosis and which options you consider
may be in the patient's best interests. It is for the patient to judge what
weight or priority to give to any benefits, burdens or risks; and to decide
whether any of the options would be acceptable.
42. You should bear in
mind that you are bound to respect an adult patient's competently made
refusal of treatment even where complying with the decision will lead to the
patient's death. If a specific treatment is requested which, in your
considered view is clinically inappropriate, you are not legally or
ethically bound to provide it. However, you should give the patient a clear
explanation of the reasons for your view, and respect their request to have
a second opinion.
43. Where the
possibility of withholding or withdrawing a life-prolonging treatment is an
option, you should offer the patient the opportunity to discuss how their
care would be managed if such a decision were made. This should include:
providing nursing care and other appropriate treatments;
preferences about who should be involved in decision making or in
providing additional support if they become incapacitated;
what might be their
palliative or terminal care needs should death become inevitable and how
these would be met12.
Discussions of this
sort, handled sensitively, may help to build trust and provide an
opportunity for you to get information about the patient's values and
priorities that might be helpful in later decision making.
Sensitive handling of
44. Discussions about
the possibility of withholding or withdrawing a potentially life-prolonging
treatment may be difficult and distressing. But this does not mean that
discussion should be avoided, rather that it should be handled sensitively,
and with appropriate support being provided to the patient13.
You should ensure the patient knows that they can invite a relative or other
person they trust, including a religious or spiritual adviser, to be present
during the discussion.
45. Discussions of this
kind may need to be conducted over several meetings. You should hold
discussions at a time when the patient is best able to understand and retain
information. You should allow the patient sufficient time to reflect and ask
questions before deciding, and discuss the patient's right to change their
mind about the decision.
46. Where patients
clearly indicate that they do not wish to know about or discuss particular
aspects of their condition or treatment, you should not force this
information on them. However, you should explain the impact this might have
on decision making; explore whether they have unmet needs for support; and
do your best to clarify their wishes about how treatment decisions should be
made in these circumstances.
47. Where a patient has
an existing condition and the likely progression of the disorder is known,
for example in some forms of cancer or Alzheimer's disease, you should
consider formulating an advance care plan with the patient and the health
care team, to allow as much time as possible for the issues to be explored
sensitively and effectively. A record of the plan should be available to the
patient and others involved in their care, so that everyone is clear about
what has been agreed.
48. The advice about
sensitive handling is particularly important in relation to decisions about
cardiopulmonary resuscitation, and may be relevant to some decisions about
artificial nutrition and hydration (see also paragraphs 78-94).
options: patients who cannot decide for themselves
Assessing capacity to
49. In cases where the
dying process itself affects capacity, the correct course of action for the
patient may have been decided previously, following the guidance above and
the principles in Part 1. Where no such advance care plan has been agreed,
or the plan has not been reviewed recently or is not relevant to the
patient's current condition, you should follow the advice below.
50. Where patients have
difficulty retaining information, communicating their views or are only
intermittently competent, you should provide any assistance a patient might
need to enable them to reach and communicate a decision. Failure to
communicate may not be due to incapacity. The fact that the patient's choice
appears irrational or does not accord with your own or others' views of what
is in the patient's best interests, is not evidence in itself that a patient
51. Where there are
doubts about a patient's capacity to make a decision, you should carry out a
thorough assessment consulting relevant professional guidelines14,
and taking into account any legal tests of capacity15.
Where appropriate, you should seek a second opinion - for example, as
described in paragraph 38 above. Where these steps have been taken and a
patient's capacity to decide remains in doubt, you must seek legal advice,
which may include asking a court to determine capacity.
52. Generally you should
start any necessary treatment, which is considered to be of some benefit to
the patient, whilst the patient's capacity is being determined. This
decision must be reviewed in the light of the outcome of the assessment.
However, if you are practising in Scotland, only treatment which is
necessary for the preservation of the patient's life or to prevent serious
deterioration in the patient's health should be started whilst capacity is
responsibility for assessing the patient's best interests
53. Where a patient
lacks capacity to decide, you should take reasonable steps to ascertain
whether they have previously expressed their wishes in an advance statement,
as described at paragraphs 14-15. You must respect any valid and clinically
relevant advance refusal of treatment where you have no reason to believe
that the patient has changed his/her mind. In making this assessment, it is
necessary to consider whether the patient had foreseen the particular
circumstances which have subsequently materialised, or would have been aware
of and weighed up any advances in treatment options since their decision was
54. Where a patient's
wishes are not known and you are not aware of an advance refusal, you - as
the senior clinician responsible for the patient's care - have
responsibility to make a decision about what course of action would be in
the patient's best interests. However, you should consult the healthcare
team and those close to the patient for any information that may be relevant
to the decision, including their views about what the patient's wishes might
have been. You should pay due regard to any previous wishes of the patient
about not disclosing information to particular individuals.
55. If the patient is
new to you at the time decisions are needed, you must satisfy yourself as to
whether such consultations have previously been carried out and find out
what has been agreed. If you are practising in Scotland you should take
steps to find out whether someone has been appointed to make health care
decisions on behalf of the patient and seek their views.
Aiming for a consensus
56. Your discussions
about treatment and how best to manage the patient's palliative or other
care needs should take account of the considerations set out in paragraphs
41-48. You should take time to try to reach a consensus about treatment. In
doing so, you should be careful to explain the participants' roles in
reaching a decision and where ultimate responsibility for the decision
rests. You should give careful consideration to how much weight it would be
reasonable to attach to each person's views.
57. You should do your
best to ensure that participants in the decision making have access to any
additional support that might be needed, and are aware of any local
arrangements for independent review should it become necessary. It may be
helpful in trying to reach agreement, for those involved to be provided with
some information about the ethical and legal considerations which may be
relevant to the decision making, including making available copies of this
and other relevant guidance.
about best interests
58. It is usually
possible to reach a consensus about treatment, given adequate time for
discussions between the parties. Individuals may be helped by the
opportunity to consult others, medical or non-medical, whose views they
respect. In complex cases where it is difficult to reach agreement, or cases
where particular individuals participating in the decision-making advance
strong arguments as to why an option may be considered controversial, you
may also find it helpful to seek multi-disciplinary clinical or ethical
independent of the healthcare team.
59. Where informal
review fails to resolve any significant disagreement, you must seek legal
advice. This may be available from your Trust or other employing
organisation, or your defence body. If you are practising in Scotland and a
dispute arises which cannot be resolved informally, you should take legal
advice on the statutory procedures for dispute resolution. Patients, or
those close to the patient where appropriate, should be informed as early as
possible of any decision to seek independent review or a legal opinion, so
that they have the opportunity to participate or can be represented.
60. Whatever decision is
made, you must do your best to ensure that all those consulted, and
especially those responsible for delivering care, are consistently informed
of the decision and are clear about the goals and the agreed care plan. You
should check that hand-over arrangements between professional and other
carers include suitable arrangements for passing on the information.
61. It is particularly
important that where a patient's death is seen as an inevitable outcome of a
decision to withhold or withdraw treatment, that everyone involved is clear
about the arrangements for providing appropriate palliative or terminal
care, and their roles. You should discuss what the role of the family or
other carers will be; what religious, spiritual or other personal support
the patient might need; and what support the patient and those close to the
patient will receive from yourself or the healthcare team.
62. You should bear in
mind that, in circumstances where individuals may be under stress, any
important information provided verbally might need to be reinforced in
63. You must ensure that
decisions are properly documented, including the relevant clinical findings;
details of discussions with the patient, health care team, or others
involved in decision making; details of treatment given with any agreed
review dates; and outcomes of treatment or other significant factors which
may affect future care. You should record the information at the time of, or
soon after, the events described. The record should be legible, clear,
accurate and unambiguous, for example avoiding abbreviations or other
terminology that may cause confusion to those providing care. You should
ensure that the records are appropriately accessible to the patient, team
members and others involved in providing care to the patient.
64. You must review your
decisions at appropriate intervals during the agreed treatment or the period
of palliative or terminal care, to determine whether the goals of treatment
or the care plan remain appropriate in the patient's present condition. In
doing so, you should talk to the patient where possible, and consult those
involved in the patient's care.
65. You should consider
seeking a second opinion where, for example, the patient's condition is not
progressing as expected. Clinical scenarios may change rapidly and it may
become necessary to restart treatment that has been withheld, or vice versa.
You also should bear in mind that patients might change their minds about
Audit and education
66. As in other areas of
practice, you must participate in clinical audit of your decisions to help
improve knowledge of the outcomes of treatment and non-treatment decisions.
Where possible you should help to disseminate best practice, for example, by
contributing to the education of students and colleagues about good practice
in this area.
Areas for special
67. All the advice in
this booklet - the guiding principles, the good practice framework, the
advice on artificial nutrition and hydration and on cardiopulmonary
resuscitation - also applies to decision making in cases involving children.
This includes premature babies and children with disabilities where the
decisions may be particularly difficult for everyone involved.
68. In all cases you,
and others involved in making decisions on behalf of a child, have a duty to
consider what is in the child's best interests on the basis of an assessment
of the benefits, burdens and risks for the child. Children's roles in
determining what their interests are, and their preferences in relation to
treatment, increase with maturity and experience. You should always
encourage and help them to understand what is proposed and to participate in
decision making as much as they are able and willing to do so.
69. You must assess a
child's capacity to decide whether to consent to or refuse a proposed
investigation or treatment. In general, children can be considered as having
capacity to make a particular decision where they are able to understand the
nature, purpose and possible consequences of the proposed investigation or
treatment, as well as the consequences of non-treatment.
70. You must also take
account of the relevant laws or legal precedents in this area17,
which vary significantly between Scotland, England and Wales, and Northern
Ireland. In particular you should bear in mind that:
At age 16 a young
person can be treated as an adult and can be presumed to have capacity to
Under age 16 children
may have capacity to decide, depending on their ability to understand what
Where a child lacks
capacity to decide, a person with parental responsibility for the child
may authorise or refuse treatment where they consider that to be in the
child's best interests.
71. The wishes of a
child who has the capacity to decide whether to consent to or refuse a
proposed treatment should normally be respected. However, the legal position
in England and Wales means that, in some circumstances where a child has
made a competent refusal of a treatment, a person with parental
responsibility, or the courts, may nevertheless authorise the treatment
where it is in the child's best interests19.
You may need to seek legal advice on how to deal with such cases.
72. Where a child lacks
capacity to make his or her own decision, you should note that authorisation
given by one person with parental responsibility cannot be vetoed by a
refusal from another person who also holds parental responsibility. In such
circumstances you should do your best, in the child's interest, to try to
achieve a consensus between those with parental responsibility.
73. It is important that
you work sensitively, and in partnership with the child (where that is
possible), those who have parental responsibility for the child, members of
the healthcare team and other carers, and aim to achieve consensus with them
about the best course of action. You should take steps to ensure that those
who have a share in the responsibility for making decisions are clear about
their roles. As the treating clinician you will take the lead in judging the
clinical factors, and the parents will lead in judging more generally what
might be in the child's best interests.
74. When considering how
best to provide the information and support needed by a child's parents or
other carers, and in trying to resolve any significant disagreements amongst
those involved in the decision making, you should follow the guidance at
paragraphs 44-48 and 53-59 above. Remember that effective communication,
careful deliberation, compassion and sensitivity are particularly important
in cases involving children20.
75. Where there is
disagreement between those with parental responsibility and the healthcare
team and this cannot be resolved satisfactorily through informal review, you
should seek legal advice about obtaining a ruling from the courts.
76. Where none of those
holding parental responsibility are willing to authorise treatment, you
should consider yourself bound by their refusal unless you obtain a ruling
from the court. In an emergency where you consider that it is in the child's
best interests to provide treatment, you may treat the child provided it is
limited to that treatment which is reasonably required either to save the
child's life, or to prevent deterioration in the child's health.
77. This advice takes
account of the legal position at the time of writing this guidance, but you
should take steps to ensure access to up to date legal advice and seek
specific advice in any cases of doubt.
Artificial nutrition and
78. Where a patient has
a problem in taking fluids or food orally, you must carry out an appropriate
assessment of their condition and their particular requirements for
nutrition or hydration. There are a number of means which you should
consider for meeting the patient's assessed needs, including nasogastric
tube, percutaneous endoscopic gastrostomy (gastric 'PEG'), subcutaneous
hydration, or intravenous cannula, all commonly termed 'artificial'
nutrition or hydration. However, the benefits and burdens are different for
artificial nutrition and artificial hydration and you should assess these
separately. In doing so you should take and follow up to date professional
advice on the particular clinical considerations affecting respectively
artificial nutrition and artificial hydration21.
79. In all cases you
should assess the patient for the presence of distressing symptoms, for
example signs of pain, breathing difficulties, confusion, and dry mouth.
Symptoms should be alleviated appropriately following up to date
80. In deciding which of
the options for providing artificial nutrition or hydration are appropriate
in meeting a patient's assessed need, you must ensure that the patient
(where able to decide), the health care team, and those close to the patient
(where the patient's wishes cannot be determined), are fully involved in the
decision making. You should take appropriate steps to help those
participating in the decision making to understand your assessment of the
patient's requirements for nutrition or hydration, and any uncertainties
underlying the options you consider appropriate for meeting those needs.
81. Where patients have
capacity to decide for themselves, they may consent to, or refuse, any
proposed intervention of this kind. In cases where patients lack capacity to
decide for themselves and their wishes cannot be determined, you should take
account of the following considerations:
Where there is a
reasonable degree of uncertainty about the likely benefits or burdens for
the patient of providing either artificial nutrition or hydration, it may be
appropriate to provide these for a trial period with a pre-arranged review
to allow a clearer assessment to be made.
Where death is imminent,
in judging the benefits, burdens or risks, it usually would not be
appropriate to start either artificial hydration or nutrition, although
artificial hydration provided by the less invasive measures may be
appropriate where it is considered that this would be likely to provide
Where death is imminent
and artificial hydration and/or nutrition are already in use, it may be
appropriate to withdraw them if it is considered that the burdens outweigh
the possible benefits to the patient.
Where death is not
imminent, it usually will be appropriate to provide artificial nutrition or
hydration. However, circumstances may arise where you judge that a patient's
condition is so severe, and the prognosis so poor that providing artificial
nutrition or hydration may cause suffering, or be too burdensome in relation
to the possible benefits. In these circumstances, as well as consulting the
health care team and those close to the patient, you must seek a second or
expert opinion from a senior clinician (who might be from another discipline
such as nursing) who has experience of the patient's condition and who is
not already directly involved in the patient's care. This will ensure that,
in a decision of such sensitivity, the patient's interests have been
thoroughly considered, and will provide necessary reassurance to those close
to the patient and to the wider public.
It can be extremely
difficult to estimate how long a patient will live23,
especially for patients with multiple underlying conditions. Expert help in
this should be sought where you, or the health care team, are uncertain
about a particular patient.
82. Where significant
conflicts arise about whether artificial nutrition or hydration should be
provided, either between you and other members of the health care team or
between the team and those close to the patient, and the disagreement cannot
be resolved after informal or independent review, you should seek legal
advice on whether it is necessary to apply to the court for a ruling.
83. Where you are
considering withdrawing artificial nutrition and hydration from a patient in
a permanent vegetative state (PVS), or condition closely resembling PVS, the
courts in England, Wales and Northern Ireland currently require that you
approach them for a ruling. The courts in Scotland have not specified such a
requirement, but you should seek legal advice on whether a court declaration
may be necessary in an individual case. (For leading cases see the legal
summary at Appendix A).
resuscitation (CPR), if attempted promptly in appropriate situations, may be
effective in restarting the heart and lungs of some patients. However CPR is
known to have a low success rate, especially for patients with serious
conditions who are in poor general health. CPR carries some risk of
complications and harmful side effects, and if used inappropriately it may
do more harm than good by prolonging the dying process and the pain or
suffering of a seriously ill patient, in a manner which could be seen as
degrading and undignified. For example, if a patient is at the end-stage of
an incurable illness and death is imminent, attempts to resuscitate them are
likely to be futile and not in the patient's best interests.
85. Advice on when it is
appropriate to attempt to resuscitate a patient, and circumstances when it
is appropriate to make an advance decision not to attempt resuscitation (DNAR
order), is available from professional bodies24.
86. Where a patient is
already seriously ill with a foreseeable risk of cardiopulmonary arrest, or
a patient is in poor general health and nearing the end of their life,
decisions about whether to attempt CPR in particular circumstances ideally
should be made in advance as part of the care plan for that patient. A
patient's own views, about whether the level of burden or risk outweighs the
likely benefits from successful CPR, would be central in deciding whether
CPR should be attempted. It is important in these cases to offer competent
patients or, if a patient lacks capacity to decide, those close to the
patient, an early opportunity to discuss their future care and the
circumstances in which CPR should or should not be attempted.
87. Discussions about
circumstances in which CPR should not be attempted can be difficult and
distressing for all concerned. However, failing to give patients or, where
appropriate, those close to the patient, the opportunity to be involved in
reaching a decision can cause more distress at a later stage, when the
patient or a relative discovers a DNAR order was made, than if the issue
were tackled sensitively at the outset.
88. Some patients may
not wish to be given the details or to make decisions about CPR themselves.
The wishes of these patients should be followed. Many patients - including
some for whom CPR is likely to be futile - will want to be involved in the
decision, and you must provide these patients with appropriate information
including up to date details about its effectiveness and appropriate use, to
ensure a sufficient understanding of what is involved. There may be other
patients for whom cardiopulmonary arrest is not a foreseeable risk who
nevertheless raise the issue. You should respond honestly to their
89. You should always
take the patient's wishes into account. You must respect a competent
patient's decision to refuse CPR. You should usually comply with patients'
requests to provide CPR, although there is no obligation to provide
treatment that you consider futile. The patient's decision must be recorded
appropriately and communicated clearly to the health care team.
90. Where patients lack
capacity to make a decision about CPR, you should consult the health care
team, the patient's proxy decision maker - in Scotland, where appointed - or
others close to the patient, taking account of any request made by the
patient when competent not to discuss their care with particular
individuals. Where, after appropriate consultation, it is your considered
judgement that attempting CPR would not be in the patient's best interests,
the reasons for that decision should be explained clearly to those
91. In holding
discussions about CPR, you should make clear to the patient, the health care
team and others consulted about the patient's care, that the provision of
all other appropriate treatment and care would be unaffected by a decision
not to attempt CPR.
92. Whilst the final
decision about the clinical merits of attempting resuscitation rests with
the consultant or general practitioner in charge of the patient's care, good
consistent communication between the doctor, nurses, patient and carers is
the key to ensuring that the patient's rights are respected, and
misunderstanding and dissent are minimised.
93. Once a decision is
made, you or a senior medical member of the team should record fully any
advance decision not to attempt to resuscitate a patient, including the
basis on which the decision was reached and the names of those with whom it
was discussed. You should ensure that the decision is communicated to all
those involved in providing care to the patient. A DNAR order should be
reviewed regularly to ensure it remains appropriate in the patient's present
94. In putting this
guidance into practice, you should take account of relevant guidance from
and relevant protocols27
within the healthcare setting in which you work.
95. If you decide not to
follow any part of the guidance in this document, you must be prepared to
explain and justify your actions and decisions, to patients and their
families, your colleagues and, where necessary, the courts and the GMC.
Appendix A: The legal
This is not intended as
a definitive statement of the law in this area. It is a summary of our
understanding of the key points.
1. Doctors have a duty
to protect the life and further the health of patients. A number of legal
judgements on withholding and withdrawing treatment have shown that the
courts do not consider that protecting life (the 'sanctity of life'
principle) always takes precedence over other considerations. The case law
identifies some circumstances where withholding or withdrawing a
life-prolonging treatment would be lawful, and establishes the following
principles (see endnotes for case references):
An act where the
doctor's primary intentioni
is to bring about a patient's death would be unlawfulii.
withdrawing treatment is regarded in law as an 'omission' not an 'act'.
A competent adult
patient may decide to refuse treatment even where refusal may result in
harm to themselves or in their own deathiii.
This right applies equally to pregnant women as to other patients, and
includes the right to refuse treatment where the treatment is intended to
benefit the unborn childiv.
Doctors are bound to respect a competent refusal of treatment and, where
they have an objection to the decision, they have a duty to find another
doctor who will carry out the patient's wishesv.
treatment may lawfully be withheld or withdrawn from incompetent patients
when commencing or continuing treatment is not in their best interestsvi.
There is no obligation
to give treatment that is futile and burdensomevii.
Where an adult patient
has become incompetent, a refusal of treatment made when the patient was
competent must be respected, provided it is clearly applicable to the
present circumstances and there is no reason to believe that the patient
had changed his/her mindviii.
For children or adults
who lack capacity to decide, in reaching a view on whether a particular
treatment would be more burdensome than beneficial, assessments of the
likely quality of life for the patient with or without the particular
treatment may be one of the appropriate considerationsix.
In the case of
patients in a permanent vegetative state (PVS), artificial nutrition and
hydration constitute medical treatment and may be lawfully withdrawn in
28. However, in practice, a court declaration should be obtainedxi.
rests with the doctor to decide what treatments are clinically indicated
and should be provided to the patient, subject to a competent patient's
consent or, in the case of an incompetent patient, any known views of that
patient prior to becoming incapacitated and taking account of the views
offered by those close to the patientxii.
Courts' approach to
2. Case law also
Where a patient's
capacity to consent to or refuse a treatment remains in doubt after
appropriate steps have been taken to assess their capacity, or where
differences of opinion about a patient's best interests cannot be resolved
satisfactorily, legal advice should be sought about applying to the courts
for a ruling.
When the Court is
asked to reach a view on whether it is in an incompetent patient's best
interests to withhold or withdraw a treatment, it will have regard to
whether what is proposed is in accordance with a responsible body of
medical opinion. But the Court will determine for itself whether treatment
or non-treatment is in the patient's best interestsxiii.
3. It is also important
to note that the Human Rights Act 1998 may have implications for this area
of medical decision making by incorporating into English law the
European Convention on Human Rights. Notably under that Convention,
Article 2 requires that a person's right to life be protected by law;
Article 3 prohibits inhuman and degrading treatment; and Article 8 requires
respect for private and family life. As relevant case law emerges, the exact
scope of these rights and how they may be balanced against one another will
become clearer. At present the case law confirms that the existing common
law principles are consistent with the European Convention on Human Rightsxiv.
It is also clear that doctors' decisions are likely to be subject to greater
scrutiny and the decision making process will need to be open, transparent
4. Other legislative
changes affecting patients' rights, mean that the legal position
in Scotland, Northern Ireland, England and Wales could diverge significantly
in future years. Such changes reinforce the importance of doctors obtaining
up to date advice and guidance on the legal as well as clinical issues
affecting their practice in this area.
R v Cox (1992) 12 BMLR 38.
For a very rare exception in the case of conjoined twins see Re: A
(Children) (Conjoined twins: surgical separation)  4 All ER 961.
Airedale NHS Trust v Bland  1 All ER 821 at page 860 per Lord Keith
and page 866 per Lord Goff. Also Re JT (Adult: Refusal of Medical Treatment)
 1 FLR 48 and Re AK (Medical Treatment: Consent)  1 FLR 129.
St George's Healthcare Trust v S (No 2). R v Louise Collins & Others, Ex
Parte S (No 2)  3 WLR 936.
Re Ms B v a NHS Hospital Trust  EWHC 429 (Fam).
Airedale NHS Trust v Bland  1 All ER 821.
Re J (A Minor) (Wardship: Medical Treatment)  3 All ER 930.
Airedale NHS Trust v Bland  1 All ER 821 at page 860 per Lord Keith
and page 866 per Lord Goff. Also Re T (Adult: Refusal of Treatment)  4
All ER 349 and Re AK (Medical Treatment: Consent)  1 FLR 129.
Re B  1 WLR 421; Re C (A Minor)  All ER 782; Re J (A Minor) (Wardship:
Medical Treatment)  3 All ER 930; Re R (Adult: Medical Treatment)
 2 FLR 99.
Airedale NHS Trust v Bland  1 All ER 821; Law Hospital NHS Trust v
Lord Advocate 1996 SLT 848.
Airedale NHS Trust v Bland  1 All ER 821; Law Hospital NHS Trust v
Lord Advocate 1996 SLT 848. Also refer to Practice Note (Official Solicitor:
Declaratory Proceedings: Medical and Welfare Decisions for Adults Who Lack
Capacity)  2 FLR.
Re J (A Minor) (Child in Care: Medical Treatment)  2 All ER 614; and
Re G (Persistent Vegetative State)  2 FCR 46.
Re A (Male Sterilisation)  FCR 193; and Re S (Adult: Sterilisation)
 2 FLR 389.
A National Health Trust v D (2000) 55 BMLR 19; NHS Trust A v M and NHS Trust
B v H (2000) 58 BMLR 87.
Appendix B Glossary
This defines some key
terms used within this document. These definitions have no wider or legal
Also referred to as
'advance directives' or 'living wills', these are statements made by
adults at a time they have capacity to decide for themselves about the
treatments they wish to accept or refuse, in circumstances in the future
where they are no longer able to make decisions or communicate their
preferences. An advance statement cannot authorise a doctor to do
anything that is illegal. Where a specific treatment is requested,
doctors are not bound to provide it, if in their professional view it is
clinically inappropriate. An advance refusal of treatment made when an
adult patient was competent, on the basis of adequate information about
the implications of his/her choice, is legally binding and must be
respected where it is clearly applicable to the patient's present
circumstances and where there is no reason to believe that the patient
had changed his/her mind.
Artificial nutrition and hydration
This term is
commonly used in medicine to refer to techniques such as the use of
nasogastric tubes, percutaneous endoscopic gastrostomy ('gastric PEG'),
subcutaneous hydration, or intravenous cannula, to provide a patient
with nutrition and hydration where a patient has a problem taking fluids
or food orally. A distinction is generally made between such
'artificial' means and 'oral' nutrition and hydration where food or
drink is given by mouth, the latter being regarded as part of nursing
referred to as ' basic care' there is no legal or commonly accepted
definition of what is covered by this term. In the medical profession it
is most often used to refer to procedures or medications which are
solely or primarily aimed at providing comfort to a patient or
alleviating that person's pain, symptoms or distress. It includes the
offer of oral nutrition and hydration.
Proxy decision maker
A patient who has
lost capacity to make decisions may have previously indicated whom they
wish to represent their views or take decisions on their behalf. In
Scotland under provisions in the Adults with Incapacity (Scotland) Act
2000 a welfare attorney, welfare guardian or a person authorised under
an intervention order, may be granted authority to make medical
decisions on behalf of an adult patient with incapacity. These persons
can be referred to as proxy decision-makers. ('Proxy decision maker' is
not an accepted legal term in England and Wales). There is a Code of
Practice under the Act for making decisions on behalf of adults with
incapacity. Advice on the powers of welfare attorneys, welfare guardians
or a person authorised under an intervention order, and on the Code of
Practice can be obtained from medical defence bodies, the Scottish
Executive, Health Department and the BMA.
'Those close to the patient'
This phrase is
intended to include any of the following - a professional or other carer,
a partner, a close family member, an informal advocate. It will also
include, in Scotland, any proxy decision maker appointed under the
Adults with Incapacity (Scotland) Act 2000, and a 'nearest relative' or
'person claiming an interest' - such as a public guardian, mental
welfare commissioner, local authority - as referred to in this Act or
under the provisions of Scottish mental health legislation. In England
and Wales under mental health legislation, a 'nearest relative' or
'guardian' may have been appointed.
Starting then stopping treatment
Some people find it
difficult to contemplate withdrawing a life-prolonging treatment once
started, either because of the emotional distress that can accompany
such a decision, or because they have concerns about what might be seen
as their 'responsibility' for the patient's death. This sense of
responsibility may particularly arise for those who understand
withdrawing treatment as a positive 'act' which is morally more
blameworthy than not starting treatment. (An example often given is the
position held by some within the Jewish faith who make this
distinction.) However, within the current broad consensus about ethical
practice in medicine and taking account of the legal position, there is
no ethical or legal obligation to continue to provide a treatment where
it has been decided that the treatment is not in the best interests of
The House Of Lords (1994) Report of the Select Committee on Medical Ethics
recommended that additional safeguards are needed to protect the interests
of the vulnerable, and to ensure that doctors only take these decisions
after appropriate consultation.
A patient will be competent if he or she can: comprehend information, it
having been presented to them in a clear way; believe it; and retain it long
enough to weigh it up and make a decision. From Re C (Adult: Refusal of
Medical Treatment)  All ER 819.
Note the provisions of the Mental Health Act 1983, Mental Health (Scotland)
Act 1984, and Mental Health (Northern Ireland) Order 1986 that permit
compulsory treatment of detained patients for their mental disorder in
See the section on the legal background - paragraph 2 and endnote (ii) case
'Those close to the patient' may include a professional or other carer,
partner, close family member, advocate, and in Scotland a proxy decision
maker appointed under the Adults with Incapacity (Scotland) Act 2000. See
the glossary for more details.
The Adults with Incapacity (Scotland) Act 2000 establishes a statutory
general authority to treat where a certificate of incapacity has been
issued, and also provides for a welfare attorney, welfare guardian, or
person authorised under an intervention order to be granted power to make
decisions on behalf of a patient. Doctors practising in Scotland should seek
legal advice on the Act and its related Codes of Practice.
For more background on these concerns see the glossary under 'starting then
'Nursing care' is defined in the glossary.
See the glossary for a definition of what is termed 'artificial' nutrition
For advice on issues which patients may want to explore consult publications
like 'The Future of Health and Care of Older People', Age Concern. 2000. And
'Feeling Better: Psychosocial Care in Specialist Palliative Care'. National
Council for Hospices and Specialist Palliative Care Services, August 1997.
For further advice on management and aftercare issues consult publications
like 'Withholding and Withdrawing Life-Prolonging Medical Treatment:
Guidance for decision making', BMA London, 2nd edition 2001. Managing
Terminal Illness Royal College of Physicians of London, 1996. 'Changing
Gear: Managing the Last Days of Life', National Council for Hospices and
Specialist Palliative Care Services, December 1997.
Advice on effective communication with patients can be found in publications
such as 'Seeking
Patients' Consent: The Ethical Considerations' GMC, November 1998.
'Breaking Bad News' Royal College of Physicians, 1998.
For example 'Assessment of Mental Capacity: Guidance for Doctors and
Lawyers'. The Law Society/BMA, 1995.
See Re C (Adult: Refusal of Medical Treatment)  1 All ER 819. Also the
Adults with Incapacity (Scotland) Act 2000 establishes a statutory test of
Some hospitals and NHS Trusts have clinical ethics committees or other
arrangements for access to clinical ethics support and advice. Where such
arrangements are not available locally, advice of this kind can be accessed
through a number of sources. Useful starting points will be the British
Medical Association especially through its Ethics Department at BMA House,
Tavistock Square, London. Telephone 020 7383 6286. Also the National Network
of Clinical Ethics Committees which can be contacted through ETHOX,
Institute of Health Sciences, Old Road, Oxford OX3 7LF. Telephone 01865
Up to date legal advice is available from sources such as medical defence
bodies, employers' solicitors. You may find it helpful to consult
publications such as 'Consent, rights and choices in health care for
children and young people.' British Medical Association, London, December
2001. Available from BMJ Bookshop, Burton Street London WC1H 9JR or browse
Age of Legal Capacity (Scotland) Act 1991 (Section 2.4); Gillick v West
Norfolk and Wisbech AHA .
Re W (a minor)  4 All ER 627.
Examples of advice on handling discussions are: 'Withholding or Withdrawing
Life Saving Treatment in Children: A Framework for Practice', Royal College
of Paediatrics and Child Health, London 1997. 'Withdrawing Treatment from
Infants. Key Elements in the Support of Families', McHaffie, H.E. (2001)
Journal of Neonatal Nursing 7(3): 85-89.
Published advice is available from a number of sources. For example, 'Ethical
Decision-Making in Palliative Care: Artificial Hydration for People who are
Terminally Ill', Ethics Working Party, August 1997, National Council for
Hospices and Specialist Palliative Care Services.
For example, there is published advice in the 'Oxford Textbook of Palliative
Medicine' ed. Doyle, Hanks, MacDonald.
For example see 'Accuracy of prognosis estimates by four palliative care
teams: a prospective cohort study.' Higginson IJ, Costantini M. BMC
Palliative Care 2002;1:1.
For example, 'CPR
guidance for clinical practice and training in hospitals' February 2000
guidance for clinical practice and training in primary care' July 2001
from the Resuscitation Council (UK). London.
For example, the BMA's model information leaflet for patients: 'Decisions
about cardiopulmonary resuscitation' BMA 2002, available from BMA House,
Tavistock Square, London WC1H 9JP or browse at
Relating to Cardiopulmonary Resuscitation: A joint statement by the British
Medical Association, the Resuscitation Council (UK) and the Royal College of
Nursing' BMA, London, February 2001, available from BMA House, Tavistock
Square, London WC1H 9JP or browse at