Evidence submitted by Dignity in Dying
1.1 Dignity in Dying welcomes the Health
Select Committee's inquiry into the development of the electronic
patient record, and is pleased to respond to its consultation.
Dignity in Dying works to put patient choice at the heart of all
end of life medical treatment decisions, in order to achieve a
dignified death for all. We are committed advocates of palliative
care and have more than 115,000 members and active supporters.
We are the UK's leading provider of Living Wills and regularly
advise members of the public, NHS Trusts, GP surgeries, care homes
and solicitors in relation to advance and other end of life decisions.
We recently produced a "toolkit" to assist healthcare
professionals working in the hospital setting when presented with
Living Wills scenarios, which was commissioned by the Department
1.2 Living Wills, which are referred to
in the Mental Capacity Act 2005 as "advance decisions to
refuse life-sustaining treatment", enable patients to set
out their wishes with respect to life-sustaining medical treatment,
in case they become seriously ill and lose mental capacity. Our
"Pro-Choice Living Will" is distinctive in its non-ideological
approach, which enables patients to make known their wish to refuse
or request life-sustaining treatmentalthough, unfortunately,
the latter option is not legally binding.
1.3 With 64% of deaths now involving an
end-of-life decision, (i) a growing number of people are choosing
to make a Living Will to ensure their end-of-life wishes are respected.
91% of the British public welcome the inclusion of Living Wills
in the Mental Capacity Act 2005 as a move that will "reassure
people that their wishes will be respected if they lose capacity".
1.4 Living Wills give peace of mind to patients,
and clarity and support to their loved ones and healthcare professionals.
They prevent unwanted medical interventions and hospitalisations,
and can help patients to achieve their wish of dying at home,
amongst other benefits.
1.5 Unfortunately however, some patients'
Living Wills are not acted on because the attending healthcare
team is unaware of their existence. This is because there is currently
no central recording system for Living Wills, to ensure they are
drawn to the attention of healthcare professionals at the necessary
time. This is a matter of great concern for the public and for
organisations and individuals representing medics, older people
and people with long-term medical conditions.
1.6 It is very important that electronic
patient records are used to record and alert healthcare professionals
to the existence of patients' Living Wills, to prevent these distressing
situations from occurring in the future and to protect healthcare
professionals from prosecution. Dignity in Dying has the support
of Baroness Greengross, the College for Emergency Medicine, the
MS Society, the National Pensioners' Convention, Action on Elder
Abuse, Counsel and Care, and the British Kidney Patients Association,
amongst others in its work to secure this outcome.
1.7 Dignity in Dying is pleased that this
proposal has received support from the Department of Health, and
we hope that every effort will be made to realise this important
work, and make sure the British public's end-of-life wishes are
2.1 A recent survey found that 91% of the
British public welcome the inclusion of Living Wills in the Mental
Capacity Act 2005 as a move that will "reassure people that
their wishes will be respected if they lose capacity" (iii).
And, with 64% of deaths now involving an end-of-life decision,
(iv) the uptake of Living Wills is rising fast. (For more information
on the uptake of Living Willsand on their benefits to the
public and healthcare professionalsplease see Section 3,
2.2 Unfortunately, some patients' wishesas
set out in their Living Willsare not acted on because the
attending healthcare team is unaware of the Living Wills' existence.
This is because there is currently no central recording system
for Living Wills, to ensure they are drawn to the attention of
healthcare professionals at the necessary time.
2.3 Failure to act on a patient's valid
Living Will can cause great distress to the patient, their loved
ones, and the healthcare team. It also puts Primary Care Trusts
(PCTs) and individual healthcare professionals at risk of prosecution
for negligence, trespass or assault. This is a matter of great
concern to many people who have made, or are considering making
Living Wills; to organisations working with, or representing,
people who have long-term medical conditions, and to a growing
number of healthcare professionals.
2.4 Dignity in Dying believes it is vital
that the electronic record system is used to identify patients'
Living Wills and alert healthcare professionals to their existence,
even in emergency situations. We are supported in this view by
many organisations, including the College for Emergency Medicine,
the MS Society, the National Pensioners' Convention, Action on
Elder Abuse, Counsel and Care, and the British Kidney Patients
Association, and by leading experts on health and older people's
issues, including Baroness Greengross.
2.5 We further believe this cost- and time-effective
measure carries great support from the public. Many people have
told us that whilst they might wish to restrict other personal
information on their record, they would welcome its use for communicating
the existence of Living Wills to healthcare professionals.
2.6 Dignity in Dying is pleased that the
Minister of State for Quality supports the principle that the
electronic patient records should provide the facility for alerting
healthcare professionals to the existence of patients' Living
Wills. We hope that every effort will be made to ensure that patients'
Living Wills are respected, and the Health Select Committee supports
3. THE BENEFITS
3.1 Many peopleparticularly older
peopleare concerned that they should not be subjected to
invasive treatment or surgery if, for example, they are terminally
ill and have no hope of recovery. A growing number of British
people are choosing to make a Living Will because they want peace
of mind that they will not receive medical treatment against their
wishes, in case they become seriously ill and lack the mental
capacity to make their wishes known.
3.2 Research shows that Living Wills can
help patients to prevent unwanted and sometimes distressing interventions
and hospitalisation, and enable more people to achieve their wish
of dying at home, amongst other benefits. (v)
3.3 Additionally, Living Wills provide clarity
and support for loved ones and healthcare teams as to how they
should proceed in challenging and sometimes highly distressing
situations. Such clarity reduces family stress at the time of
a decision to withdraw life-sustaining treatment, and research
indicates that the use of a Living Will also aids the bereavement
3.4 Research conducted with the British
Geriatrics Society found that 56% of the geriatricians surveyed
had cared for patients with Living Wills. (vii) (The nature of
geriatricians' work means that they are amongst those most likely
to be presented with Living Wills). Of those who had cared for
the patient at the time the Living Will came into effect, 39%
said that they'd changed treatment as a direct result of the Living
Will and 78% felt that decisions had been easier to make.
3.5 96% of geriatricians said that even
when the Living Will had not yet come into effect, it still improved
discussion with the patient (96%). 76% said that Living Wills
improved discussions with relatives (76%).
3.6 Additional benefits of Living Wills
were identified as follows:
(a) Living Wills clarify how to proceed in
(b) Living Wills enable the physician to
treat less aggressively.
(c) Living Wills promote an earlier trend
towards palliative care.
(d) Living Wills made doctor-patient discussions
regarding the end of life more easy.
(e) Living Wills help non-physician staff
and relatives reach consensus.
(f) Living Wills were also seen to aid communication,
reduce paternalism, and increase patient autonomy.
4. THE UPTAKE
4.1 The most recent independent Living Wills
survey (ICM, September 2006) found that 13% of respondents had
a Living Will, and 23% of respondents over the age of 65 had a
Living Will. A further 51% were considering making a Living Will.
4.2 This research indicates that the uptake
of Living Wills is rising at a fast rate. (In 1995, just 2% of
the population were found to have Living Wills (ix); in 2005,
this was 8%) (x).
4.3 It follows that the number of instances
where patients' Living Wills are not acted upon (for reasons set
out below) will also increase unless the electronic patient records
are used to remedy this problem.
5. PROBLEMS CAUSED
5.1 There is currently no system for identifying
and recording the existence of patients' Living Wills, to ensure
that they are brought to the attention of the attending healthcare
team. This means that patients are, in effect, responsible for
making their healthcare team aware of their Living Wills at all
times. This is both unreliable and risky, as patients may have
lost capacity prior to being admitted to hospital.
5.2 Dignity in Dying is frequently contacted
by people whose loved one's Living Will was not respected because
the healthcare team was unaware that it existed. This is very
worrying, not least because it puts PCTs and individual healthcare
professionals at risk of claims for negligence, trespass and assault.
It can happen for several reasons, eg:
((a) The patient may have logged the Living
Will with the GP in his or her medical records, but this information
is not passed on to the hospital when the patient is admitted
in an emergency (or non-emergency) situation.
(b) The Living Will is not recorded in a
suitably prominent place in the patient's medical records.
(c) The new healthcare team is not alerted
to the Living Will's existence when the patient is transferred
between wards, hospitals or institutions.
(d) The patient has need of emergency treatment
whilst visiting another part of England and neither the Living
Will nor his/her medical records can be quickly accessed.
(e) The patient has a Living Will at home
which can not be quickly accessed, so the healthcare team proceeds
with administering life-sustaining treatment.
(f) Regrettably, healthcare professionals
still do not check whether the patient has a Living Will.
6.1 All of the risks identified above could
be avoided by flagging the existence of Living Wills in the nationally
available electronic patient records currently being developed
by NHS Connecting for Health, alongside other key information
about the patient, eg, allergic reactions to drugs.
6.2 Recording the existence of Living Wills
in the Summary Care Records along with other important medical
information would enable healthcare professionals to act swiftly
and in accordance with their patients' wishes, even in emergency
6.3 The benefits of identifying the existence
of Living Wills in the electronic patients' records will include:
(a) Helping to ensure patients' wishes are
respected and preventing prosecutions by increasing ease and speed
of access to the necessary information:
(i) Recording Living Wills in patients' Summary
Care Records would ensure that healthcare teams are made aware
of their patients' Living Wills at the necessary time, and can
(ii) Recording Living Wills and other "emergency"
information in one place would help healthcare professionals to
avoid delays whilst they made several checks or calls for different
(iii) PCTs and individual healthcare professionals
would not risk prosecution for failing to take reasonable steps
to identify and act in accordance with a patient's Living Will.
(b) A cost-free and time-effective project
that will avoid bureaucracy and be easy to implement:
(i) Additional funds would not be required
as the Care Records Service is an existing project and has already
been budgeted for (no additional software would required for the
(ii) Living Wills data could be transferred
to patients' Summary Care Records at the same time as other data
is transferred (as this has yet to happen).
(iii) Healthcare professionals would not
have to repeatedly record the existence of a Living Will in different
medical documents, as it would be logged on the central system.
(c) Improving doctor-patient communication
and supporting healthcare teams:
(i) Prior to adding the Living Will onto
the patient's Summary Care Record, the doctor would have the opportunity
to review it, and make sure that it fulfilled the criteria set
out in the Mental Capacity Act's requirements for valid (and legally-enforceable)
(ii) The doctor could also use this opportunity
to suggest ways to improve the Living Will and make it more clear
or more applicable to medical scenarios which might arise.
(iii) Living Wills work best when they are
used as an aide to ongoing doctor-patient discussion regarding
the patient's prognosis and values. Bringing the doctor and patient
together in order to discuss and record the Living Will on the
patient's Summary Care Record would have the additional benefit
of helping to improve the patient's understanding of different
end-of-life scenarios, and the doctor's understanding of both
the patient's values, and how he or she would like to be treated
in different end-of-life situations.
6.4 Identification of Living Wills on electronic
patient records should be voluntary rather than mandatory, in
accordance with the Care Record Guarantee. Due to the obvious
benefits of including Living Wills on the electronic patient records,
and based on our conversations with people who are concerned to
see their Living Will is respected, Dignity in Dying envisages
that a significant proportion of people with Living Wills would
make use of this option. However, professionals should of course
be encouraged to make reasonable efforts to check whether a Living
Will exists if it does not appear on the Summary Care Record,
in accordance with the Mental Capacity Act.
6.5 Healthcare professionals who have a
conscientious objection to undertaking an activity with respect
to a patient's Living Will should act in accordance with the Mental
Capacity Act Code of Practice and BMA guidelines.
Dignity in Dying
REFERENCES (i) Seale,
C. "National survey of end-of-life decisions made by the
UK medical practitioners", Palliative Medicine 2006;
(ii) "Living Wills", ICM Research,
(iii) "Living Wills", ICM Research,
(iv) Seale, C. "National survey of end-of-life
decisions made by the UK medical practitioners", Palliative
Medicine 2006; 20: 1-8.
(v) Degenholtz H B, Rhee, Y, Arnold R M. "Brief
communication: The relationship between having a living will and
dying in place", Ann Intern Med 2004; 141:
113-117; Schiff R, Sacares P, Snook J et al, "Living
wills and the Mental Capacity Act: a postal questionnaire survey
of UK geriatricians", Age and Ageing 2006; 35:
(vi) Tilden V P, Tolle S W, Nelson C A, Fields
J, "Family decision making to withdraw life-sustaining treatments
from hospitalised patients", Nursing Research 2001;
50 (2): 105-115.
(vii) Schiff R, Sacares P, Snook J et al,
"Living wills and the Mental Capacity Act: a postal questionnaire
survey of UK geriatricians", Age and Ageing 2006;
(viii) "Living Wills", ICM Research,
(ix) Donnison, D and Bryson, C, "Matters
of life and Death: attitudes to euthanasia", in Howell, R,
Curtice, J, Park, A, Brook, L, and Thomson, K (eds), British
Social Attitudes: the 13th report, (Aldershot: SCPR Dartmouth,
(x) "How to have a good death", ICM
Research, 2005. NB Dignity in Dying believes this growing interest
in Living Wills has been fuelled in large part by debate generated
by the Mental Capacity Bill, and subsequently the Mental Capacity
Act 2005, which has increased public awareness of end-of-life