Read the new (GMC) guidance on end of life care

From the General Medical Council
This advice applies UK-wide.
Download or read online here:
Treatment and care towards the end of life:
good practice in decision making

The GMC registers doctors to practise medicine in the UK. It has the power to suspend or strike off a doctor for misconduct. It could severely discipline a doctor, for instance, that failed to observe a valid and applicable advance directive. Our initial appraisal of the GMC Guidelines is highly favourable. The language is clear and we would commend the text as well as the video and other aids to our readers. We will be looking at the NHS Scotland Guidelines next, and will have quite a bit to say about them.

See flow-charts, case studies and a video relating to the new GMC guidance.

Here are some excerpts in relation to advance directives:

15. If you assess that a patient lacks capacity to make a decision, you must:
. . . (b) check the patient’s medical record for any information suggesting that they have made a potentially legally binding advance decision or directive refusing treatment.

16 (c) If the patient has made an advance decision or directive refusing a particular treatment, the doctor must make a judgement about its validity and its applicability to the current circumstances. If the doctor concludes that the decision or directive is legally binding, it must be followed in relation to that treatment. Otherwise it should be taken
into account as information about the patient’s previous wishes.

When advance refusals are binding

68 If a patient lacks capacity and information about a written or verbal advance refusal of treatment is recorded in their notes or is otherwise brought to your attention, you must bear in mind that valid and applicable advance refusals must be respected. A valid advance refusal that is clearly applicable to the patient’s present circumstances will be legally binding in England and Wales (unless it relates to life-prolonging treatment, in which case further legal criteria must be met). Valid and applicable advance refusals are potentially binding in Scotland and Northern Ireland, although this has not yet been tested in the courts.

Non-binding advance refusals
69 Written and verbal advance refusals of treatment that are not legally binding, should be taken into account as evidence of the person’s wishes when you are assessing whether a particular treatment would be of overall benefit to them.

Assessing the validity of advance refusals
70 If you are the clinician with lead responsibility for the patient’s care, you should assess both the validity and the applicability of any advance refusal of treatment that is recorded in the notes or that has otherwise been brought to your attention. The factors you should consider are different in the four UK countries, reflecting differences in the legal framework (see the legal annex). However, in relation to validity, the main considerations are that:
(a) the patient was an adult when the decision was made (16 years old or
over in Scotland, 18 years old or over in England, Wales and Northern
(b) the patient had capacity to make the decision at the time it was made
(UK wide)
(c) the patient was not subject to undue influence in making the decision
(UK wide)
(d) the patient made the decision on the basis of adequate information
about the implications of their choice (UK wide)
(e) if the decision relates to treatment that may prolong life it must be in
writing, signed and witnessed, and include a statement that it is to
apply even if the patient’s life is at stake (England and Wales only)
(f) the decision has not been withdrawn by the patient (UK wide)
(g) the patient has not appointed an attorney, since the decision was made,
to make such decisions on their behalf (England, Wales and Scotland)
(h) more recent actions or decisions of the patient are clearly inconsistent
with the terms of their earlier decision, or in some way indicate they
may have changed their mind.

Assessing the applicability of advance refusals
71 In relation to judgements about applicability, the following considerations apply across the UK:
(a) whether the decision is clearly applicable to the patient’s current circumstances, clinical situation and the particular treatment or treatments about which a decision is needed
(b) whether the decision specifies particular circumstances in which the refusal of treatment should not apply(c) how long ago the decision was made and whether it has been reviewed or updated (this may also be a factor in assessing validity)
(d) whether there are reasonable grounds for believing that circumstances exist which the patient did not anticipate and which would have affected their decision if anticipated, for example any relevant clinical developments or changes in the patient’s personal circumstances since the decision was made.

73 If there is doubt or disagreement about the validity or applicability of an advance refusal of treatment, you should make further enquiries (if time permits) and seek a ruling from the court if necessary. In an emergency, if there is no time to investigate further, the presumption should be in favour of providing treatment, if it has a realistic chance of prolonging life, improving the patient’s condition, or managing their symptoms.

74 If it is agreed, by you and those caring for the patient, that an advance refusal of treatment is invalid or not applicable, the reasons for reaching this view should be documented.

Glossary of terms
Advance decision or advance directive: A statement of a patient’s wish to refuse
a particular type of medical treatment or care if they become unable to make
or communicate decisions for themselves. They are called advance decisions in
England and Wales, and advance directives in Scotland. If an advance refusal is
valid and applicable to the person’s current circumstances, it must be respected. It
will be legally binding on those providing care in England and Wales (provided that
if it relates to life-prolonging treatment it satisfies the additional legal criteria), and
it is likely to be legally binding in Scotland and Northern Ireland.

Advance statement: A statement of a patient’s views about how they would or
would not wish to be treated if they become unable to make or communicate
decisions for themselves. This can be a general statement about, for example,
wishes regarding place of residence, religious and cultural beliefs, and other
personal values and preferences, as well as about medical treatment and care.

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