The Newcastle upon Tyne Hospitals NHS Foundation Trust

Advance Decision to Refuse Treatment Policy (Advanced Refusal of Treatment/

Previously known as Living Wills) Incorporating the Mental Capacity Act 2005
Version No.:
Effective From:
Expiry Date:
Date Ratified:
Ratified By:

3.1
3 July 2013
30 June 2016
11 June 2013
Clinical Risk Group

Introduction

1.1

Patients have a fundamental legal and ethical right to determine what happens to
their own bodies. Consent is a patients agreement for a health professional to
provide care. Valid consent to treatment is therefore absolutely central in all
forms of healthcare, from providing personal care to undertaking major surgery.
For patients with capacity, consent must be obtained as outlined in the Trust
Consent Policy.

1.2

It is recognised that adults have the right to say in advance that they want to
refuse treatment if they lose capacity in the future. There are a number of options
open to patients in determining their future care in the event that they lose
capacity to make decisions. The Clinical Networks, Deciding Right document
contains details of the options available to patients. One of these options is the
right to make an Advance Decision to Refuse Treatment. A valid and applicable
Advance Decision to refuse treatment has the same force as a contemporaneous
decision. However, this only takes effect when the person who made the
Advance Decision to Refuse Treatment ceases to have the capacity to make the
decision in question. Similarly, an Advance Statement may be made to express a
patients wishes, feelings, beliefs and values about future care. Unlike the
Advance Decision to Refuse Treatment, an Advance Statement is not legally
binding but must be taken into account by carers if the person loses capacity.
Further details regarding Advance Decisions to Refuse Treatment, Advance
Statements and other decisions which can be made at a time when a patient has
capacity in anticipation that they may lose capacity or be too unwell to make their
wishes clear to healthcare professionals are outlined under Deciding Right.

1.3

On 1 October 2007 the Mental Capacity Act 2005 (MCA) came into force. The
Act defines the legal test for capacity and sets out core principles and methods of
making decisions and carrying out actions in relation to personal welfare,
healthcare and financial matters on behalf of those who lack capacity. The Act
provides certain ways in which an individual may influence what happens to them
should they ever be unable to make a particular decision in the future. For
individuals over the age of 18 one of these is to make an Advance Decision to
refuse treatment.

Page 1 of 15

1.4

An Advance Decision to refuse treatment is a set of instructions from the patient

to the medical team. It sets out the specific circumstances in which the patient
would not want certain treatments or would want a particular treatment to be
stopped. An Advance Decision to Refuse Treatment cannot be used to refuse
basic care that a patient may need to keep them comfortable including for
example; food, fluids or pain control. Nor can it be used to request that their life
be brought to an end.

1.5

The MCA for the first time put Advance Decisions to Refuse Treatment
[previously referred to as Living Wills] on a statutory footing. The MCA sets out
what is required for an Advance Decision to Refuse Treatment, to be valid and
applicable and introduces new safeguards. The MCA introduces particular
conditions for Advance Decisions to Refuse Treatment dealing with the refusal of
life-sustaining treatment, namely that they must be written, signed and witnessed
and include a statement that the decision applies even if the persons life is at
risk.

1.6

Some people may have made Advance Decisions to Refuse Treatment which
were valid under existing common law but will not be enforceable under the
MCA.

1.7

People with decision-making capacity can consider revising / remaking their

Advance Decision to Refuse Treatment so that it meets the requirements of the
MCA, particularly if it deals with life-sustaining treatment. Some people will,
however, have lost capacity at the time the MCA came into force and so do not
have this option. This means the Act has effectively disadvantaged those who
have refused life-sustaining treatment and have lost capacity before it comes into
force.

1.8

An understanding of the term Advanced Decision to Refuse Treatment is key in

enabling staff to respond to patients requests to withhold treatment and the
processes to confirm its currency and legitimacy. This policy defines what
constitutes an Advance Decision to Refuse Treatment. This term replaces
previous references to Advance Directives and Living Wills which are now
obsolete.

1.9

This policy promotes the principle that people in contact with the Trust take an
active role in planning their care and work in partnership with health and social
care to achieve desired outcomes.

Scope

2.1

The guidance offered in this document applies to all Health Professionals in the
event that they are made aware that a patient either has made an Advance
Decision or requests to write one. Furthermore, guidance is provided on how to
ensure an Advance Decision to Refuse Treatment is valid and what to do if the
Page 2 of 15

validity of an Advance Decision is in question. This policy must be read in

conjunction with the Trust Jehovahs Witness Policy. There are additional
requirements specific to Jehovahs Witness patients which are not outlined in this
policy. http://intranet.xnuth.nhs.uk/Policies/nursing/JehovahsWitness201209.pdf
3

Aims

The policy provides guidance for staff in supporting patients who have made or wish to
make an Advance Decision to Refuse Treatment.
4

Duties (Roles and Responsibilities)

4.1

Director of Quality & Effectiveness

The Director of Quality & Effectiveness has overall responsibility for ensuring that
this policy is reviewed and that there are appropriate quality assurance
mechanisms in place in relation to the guidance in this policy.

4.2

Admitting Nurse
The admitting nurse has the responsibility for ascertaining during the completion
of the admission documentation whether the patient has an Advance Decision to
Refuse Treatment.

4.3

Any member of staff receiving an Advance Decision

Any member of staff receiving an Advance Decision to Refuse Treatment should
record in the patients record that an advance decision has been received.

4.4

Responsible Medical Practitioners

Any doctor responsible for a patients care must respect a valid Advance
Decision to Refuse Treatment relating to the patients health care as legally
binding upon any care or treatment that they can give. Doctors who have doubts
about the validity of an Advance Decision should obtain advice from the Legal
Services Department, who will take steps to have the validity of the Advance
Decision tested, if necessary by the Court of Protection. Doctors should take
Advance Statements into account and follow them where possible and in the
patients best interests. A clinician will not be held liable if s/he can prove that
s/he acted in the patients best Interests and has taken all reasonable steps it find
out if an Advance Decision exists. If the clinician has a reasonable belief that an
Advance Decision exists and that it is valid and applicable, s/he may be held to
legally liable if acting in contravention of the Advance Decision to Refuse
Treatment.
4.5

Other Health Care Professionals

Any professional with direct responsibility for a patient or for an aspect of the
patients care and treatment must also respect Advance Decisions to Refuse
Treatment and take Advance Statements into account as defined above for
doctors.

Page 3 of 15

Additionally other health professionals should often take the lead in establishing
whether an Advance Decision/statement exists and in documenting it on the care
plan. Sometimes it may be part of a health professionals duty of care to help and
support a service user in drawing up an Advance Decision to Refuse Treatment.
4.6

Where there is a major difference of opinion relating to Advance Decision to

Refuse Treatment legal advice must be sought. The matter may be referred to
the Court of Protection.

Definitions

5.1

An Advance Decision to Refuse Treatment is a statement made by a mentally

competent person aged over 18 years, which defines in advance their refusal of
medical treatment should they become mentally or physically incapable of
making their wishes known. An example of an Advance Decision is available as
Appendix 1.

5.2

Advance Statements may be made to express patients wishes, feelings, beliefs

and values about future care. Unlike the Advance Decision, an Advanced
Statement is not legally binding but must be taken into account if the person
loses capacity. Advance statements may be made verbally or in writing.

5.3

The MCA provides that Advance Decisions to Refuse Treatment are legally
binding provided they fulfil the legal requirements of being valid and are
applicable to the particular treatment in question.

5.4

An Advance Decision to Refuse Treatment is only valid and applicable if;

The person who made it was over 18 years old and had the capacity to
make the decision at the time it was made. This means they must be able
to;
a) understand information about the procedure or course of treatment
b) retain information in their mind
c) use or weigh that information as part of the decision-making process
d) communicate their decision.
The service user has not withdrawn it either verbally or in writing.
A Lasting Power of Attorney has not been completed subsequent to the
Advance Decision being made (in which case the LPA has priority in
relation to what treatment is given or withheld).
The service user has done nothing inconsistent with it remaining as their
fixed position (e.g. by taking a treatment voluntarily that they objected to in
the Advance Decision to Refuse Treatment)
It must be applicable to the treatment in question. It should clearly refer to
the treatment in question and it should explain in which circumstances the
refusal is to apply. If there have been changes in the circumstances which
there are reasonable grounds for believing would have affected a persons
Advance Decision to Refuse Treatment when they made it, then it may not

Page 4 of 15

Individuals cannot make an Advance Decision to Refuse Treatment for

treatment they want, but only for those treatments they do not want.
It may be expressed in laymans terms and can be made verbally or in
writing, with the exception of decisions to refuse life sustaining treatment
which must be in writing.
Where the Advance Decision to Refuse Treatment is to refuse life
sustaining treatment it must:
- be in writing, which includes being written on the persons behalf or
recorded in their medical notes
- be signed by the maker in the presence of a witness who must also
sign the document. It can also be signed on the makers behalf at
their direction if they are unable to sign for themselves
- be verified by a specific statement made by the maker, either
included in the document or a separate statement, which states that
the advance decision is to apply to the specified treatment even if
life is at risk. If there is a separate statement this must also be
signed and witnessed.
Any specified circumstances stated to apply before the Advance Decision
to Refuse Treatment takes effect actually do apply.

5.4

Advance Decisions to refuse treatment cannot be used to;

ask for anything illegal, for example, euthanasia
demand Healthcare teams to consider inappropriate care
refuse the offer of food or drink
refuse the use of measures designed solely to maintain comfort for
example; pain relief, warmth, shelter
refuse basic nursing care aimed at providing comfort for example; bathing
or mouth care
ask for treatment, they are only to identify treatments the individual does
not want excluding those listed above

5.5

An Advance Decision to refuse treatment is invalid when

the person has withdrawn the decision while still having capacity to do so

after making the Advance Decision, the person made a Lasting Power of
Attorney (LPA) for Personal Welfare (Health & Welfare) giving a person or
persons authority to make the same treatment decisions
the person has done something that clearly goes against the Advance
Decision to Refuse Treatment which suggests that they have changed
their mind
the person has been detained under the Mental Health Act and requires
emergency psychiatric treatment.

Page 5 of 15

5.6

An Advance Decision to a refuse treatment is not applicable when;

the proposed treatment is not the treatment specified in the Advance
Decision to Refuse Treatment
the circumstances are different from those that have been set out in the
Advance Decision to Refuse Treatment
there are reasonable grounds for believing that there have been changes
in circumstances, which would have affected the decision if the person
had known about them at the time they made the Advance Decision to
Refuse Treatment eg significant advances in medical treatment.

5.7

When an Advance Decision to Refuse Treatment is not valid or applicable

to current circumstances:
The healthcare professionals must consider the ADRT as part of their
assessment of the persons best interests if they have reasonable grounds to
think it is a true expression of the persons wishes. They must not assume that
because an Advance Decision to Refuse Treatment is either invalid or not
applicable, that they should always provide the specified treatment (including lifesustaining treatment) they must base this decision on what is in the persons
best interests.

5.8

Patients detained under the Mental Health Act:

Where patients are detained under the Mental Health Act, they can be given a
treatment that they have previously refused by an Advance Decision to Refuse
Treatment. When proposing treatment for patients detained under the Mental
Health Act, legal advice should be sought through the Trusts Legal Services
Department when there is an Advance Decision to Refuse Treatment.

5.9

Assistance for Trust staff in ascertaining whether an Advanced Decision to

Refuse Treatment is valid;
See Appendix 2 Flowchart How to check an Advance Decision to
Refuse Treatment is valid
Deciding Right document
If still unclear please contact the Legal Services or Safeguarding team
for assistance

Patients requesting to make an Advanced Decision

6.1.

It is preferable for patients to make an Advance Decision prior to admission to

hospital. The opportunity to make an Advance Decision should not be actively
offered to patients in contact with the Trust. This is because patients might feel
that undue pressure is being brought to bear on them if the Advance Decision is
actively promoted, potentially undermining the patients trust in their hospital
carers. It is recognised, however, that there may be circumstances when a
patient wishes to make or amend an Advance Decision whilst in hospital for
treatment.

Page 6 of 15

6.2

If a patient, whilst under the care of Newcastle upon Tyne Hospitals NHS
Foundation Trust, asks a member of staff about making an Advance Decision to
Refuse Treatment, the patient should be advised to seek independent advice /
counselling and preferably advised to seek legal help from their own solicitor.
Discussion about Advance Decision must be approached in a sensitive manner

6.3

Medical staff must be notified of a patients request and an appropriate entry

must be made in the patients clinical record.

6.4

If the patient does not have a solicitor, they should be advised that the hospital
can contact a solicitor to assist in drawing up an Advance Decision to Refuse
Treatment. The patient should also be advised that legal fees for this will be
charged to the patient.
Where assistance is needed in contacting a solicitor, authorisation should be
obtained from the Patient Services Director or Senior Manager on-call.

6.5

It is the patients own responsibility to draft an Advance Decision to Refuse

Treatment, and it is recommended that this be done with medical advice and
counselling as part of a continuing doctor / patient dialogue, even though patients
have a legal right to decline specific treatment, including life-prolonging
treatment. Whilst the document needs to be drawn up by the patient, preferably
with advice from their doctor, the legal format is important and so the patient
should also seek the advice of a solicitor.

6.6

Should it be necessary for a Trust employee to witness an Advance Decision to

Refuse Treatment this role should be undertaken by a Consultant who is not
directly involved in the care of the patient, or by a Senior Manager.

6.1

Guidelines for producing an Advance Decision

6.1.1 Detailed records should be kept by staff of all discussions concerning a
patients wish to make an Advance Decision to Refuse Treatment.
6.1.2 The physical and mental capacity of the patient at the time the Advance
Decision to Refuse Treatment is made should be recorded by a suitably
medically qualified person so that there is positive evidence of the patients
capacity at the time.
6.1.3 Opportunity should then be provided for the patient to discuss the Advance
Decision to Refuse Treatment in detail with their clinician. This should
begin with a general discussion about the patients values and beliefs
before particular decisions are made. It may be necessary for discussions
about the Advance Decision to Refuse Treatment to take place over
several meetings and also to involve other family members or carers at the
patients request. Where the patient does not wish to involve family or
carers, this wish should be respected and staff should ensure that the

Page 7 of 15

patients autonomy is safeguarded. All consultant medical staff should, in

principle, be prepared to respond to a patients request for discussion of
an Advance Decision, referring to other colleagues as necessary where
the discussion falls outside their current competence.
6.1.4 The Advance Decision to Refuse Treatment should be drafted in clearly
understandable language and should be witnessed by independent
persons. The form attached to this policy should be completed in all
instances (Appendix 1). Explanation of the form should always be
available for the patient prior to its completion.
6.1.5 Care must be taken to ensure that the patient is not subjected to influence
from persons who have a conflict of interest and who may stand to benefit
from the patients death or who wish to impose their views or values on the
patient. Views of relatives can be taken into account but must not be
allowed to overrule the patients stated wishes and the patients best
interests.
6.1.6 Where there are cases of difficulty, a declaration may need to be obtained
from the Court of Protection as to whether the Advance Decision to Refuse
Treatment should be followed. It is essential that legal advice be obtained
in cases of difficulty.
6.1.7 No person has a legal right to accept or decline treatment on behalf of
another adult unless a formal Lasting Power of Attorney (Welfare) has
been completed and registered with the Office of the Public Guardian. For
further information see the Lasting Power Of Attorney Policy.
6.1.8 At such time as a decision has to be made as to whether to comply with
the wishes of the patient as expressed in an Advance Decision to Refuse
Treatment, it is essential that a relevant health professional determines
whether the patients clinical circumstances are significantly different from
those envisaged when the Advance Decision to Refuse Treatment was
signed. Steps must be taken to ensure that the patient has not changed
his/her mind between making the Advance Decision to Refuse Treatment
and the decision by health professionals to act upon it. This is particularly
important where there has been significant change in the patients medical
condition or circumstances, or a long time has elapsed since making the
Advance Decision to Refuse Treatment; also where there has been any
important medical development relevant to the patients condition or
treatment.
6.1.9 All discussions about an Advance Decision to Refuse Treatment should be
clearly, contemporaneously and accurately recorded in the patients
clinical notes.

Page 8 of 15

Training

The Trust includes Advance Decision training as part of the mandatory online breeze
training package Mental Capacity Act 2005.
8

Equality and Diversity

The Trust is committed to ensuring that, as far as is reasonably practicable, the way we
provide services to the public and the way we treat our staff reflects their individual
needs and does not discriminate against individuals or groups on any grounds. This
policy has been properly assessed.
9

Monitoring Compliance

Standard/process/issue Monitoring and audit

Method
By
Minutes
of
MCA
Lead
Patients have the right
MCA steering
under the MCA to
group
develop Advanced
including
Decisions and for these
activity data
to be honoured.
submitted
Integrated
Patient Safety
Governance
and Risk
Report
Lead
10

Committee
MCA steering
group

Frequency
Quarterly

Clinical Risk
Group

Quarterly

Consultation and Review

This policy has been reviewed with reference to the documents listed in section 12.
11

Implementation (including raising awareness)

Mandatory training regarding advanced decisions is available for all staff.

12

References

The Clinical Network (2012) Deciding Right

Mental Capacity Act (2005) London. HMSO
13

Associated Documentation

Deciding Right
Jehovahs Witness Policy
Lasting Power of Attorney Policy
Mental Capacity Act 2005

Page 9 of 15

Appendix 1
Example Advanced Decision to Refuse Treatment

Page 10 of 15

Page 11 of 15

Page 12 of 15

Page 13 of 15

Appendix 2
Flowchart How to check an Advance Decision to Refuse Treatment is valid

Page 14 of 15

THE NEWCASTLE UPON TYNE HOSPITALS NHS FOUNDATION TRUST

IMPACT ASSESSMENT SCREENING FORM A
This form must be completed and attached to any procedural document when submitted to the appropriate committee for consideration and approval.
Policy
Title:

Advance Decision to Refuse Treatment Policy (Advanced Refusal of

Treatment/ Previously known as Living Wills) Incorporating the Mental
Capacity Act 2005

1.

Does the policy/guidance affect one group less or more favourably than
another on the basis of:

Policy
Author:
Yes/No?

2.
3.
4(a).
4(b).
4(c).
4(d)

Race

No

Ethnic origins (including gypsies and travellers)

Nationality
Gender
Culture
Religion or belief
Sexual orientation including lesbian, gay and bisexual people
Age
Disability learning difficulties, physical disability, sensory impairment and
mental health problems.
Is there any evidence that some groups are affected differently?
If you have identified potential discrimination, are any exceptions valid, legal
and/or justifiable?
Is the impact of the policy/guidance likely to be negative? (If yes, please
answer sections 4(b) to 4(d)).
If so can the impact be avoided?
What alternatives are there to achieving the policy/guidance without the
impact?
Can we reduce the impact by taking different action?

No
No
No
No
No
No
No
No

Karen Collingwood, Nurse Specialist, Patient Safety

You must provide evidence to support your response:
This policy will not affect one group more or less favourably on grounds of race,
ethnic origin, nationality, gender, culture, religion or belief, sexual orientation, age
or disability.

No
N/A
No
N/A
N/A
N/A

Comments:

Action Plan due (or Not Applicable): N/A

Name and Designation of Person responsible for completion of this form: Karen Collingwood, Nurse Specialist, Patient Safety

Date: 28/05/13

Names & Designations of those involved in the impact assessment screening process: Karen Collingwood, Nurse Specialist, Patient Safety
(If any reader of this procedural document identifies a potential discriminatory impact that has not been identified on this form, please refer to the Policy Author identified
above, together with any suggestions for the actions required to avoid/reduce this impact.)

Page 15 of 15