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Now we’ve started to talk about what's important to us, we can begin planning for the future…
Derbyshire Gold Record
about my future care
Southern Derbyshire Clinical Commissioning Group
I can help if I know what she wants
I need to talk about what's important to me
About this Book
This booklet aims to help you achieve your wishes for your
future care.
It gives you a chance to think about, talk about and write down
what is important to you, so that you can describe the type of
care you would like at the end of your life.
We plan for all other major life events – marriage, the birth of
children, birthdays, anniversaries and retirement – so why not
plan for the end of our lives?
The booklet can also help your carers (your family, friends and
professionals) to understand what is important to you when
planning your care. This means that if you become unwell and
cannot make decisions about your care, others will be able to
make decisions on your behalf, based on your wishes.
The Gold Standards Framework
The Gold Standards Framework (GSF) has been adopted by
many GP practices and district nursing teams to provide the
highest standard of care possible for all patients who may be
in the last year of life, irrespective of age or diagnosis.
Your doctor or nurse has talked with you about your poor
health and will want professionals involved in your care, to
recognise you as a Gold Patient.
British Heart Foundation 01865 391836
www.bhf.org.uk
British Lung Foundation 0300 0030500
www.lunguk.org
Motor Neurone Disease Association 02074049982
www.mndassociation.org
Parkinson's Disease Society 0808 800 0303
www.parkinsons.org.uk
Multiple Sclerosis Society 0800 0323839
www.mssociety.org.uk
Alzheimer's Society 01636 642804
www.alzheimers.org.uk
The Stroke Association 020 7566 0300
www.stroke.org.uk
Age UK 0800 1696565
www.ageuk.org.uk
Contacts
Derby City District Nursing Service 01332 258200
Treetops Hospice 0115 9491264
Marie Curie 0845 0567 899
Adult Social Services 01332 717777
Local office St Mary's Gate, Derby
Cancer Information Centre 01332 787433
Royal Derby Hospital
Derby Carers Association 01332 200002
Macmillan Benefits Local Advice Line 01246 828852
Open 10 - 12.30pm, Mon, Wed, Thurs
Macmillan Cancer Support 0808 808 0000
www.macmillan.org.uk
If you do not have access to the internet, please remember
that most local libraries have computers available for public
use.
My Personal Information
Name…………………………………………………………….. Address ………………………………………………………... …………………………………………………………………... Tel: ……………………………………………………………… Date of Birth ………………………………………………….. My chosen Key Contact …………………………………….. Relationship ………………………………………………….. Address ………………………………………………………. …………………………………………………………………. Tel …………………………………………………………….. Other family or carer contact ……………………………... Relationship ………………………………………………... Address ……………………………………………………… ……………………………………………………………….. Tel …………………………………………………………...
ROLE NAME CONTACT DETAILS
Key Worker
GP
Hospital Consultant
District Nurse
Community Matron
Macmillan or Specialist Nurse
Social Worker
Important Contacts
You may want to write down the contact details of people
involved in your care. You may not be known to all of these
professionals and there is space to add others.
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Further information
You can use this page to write down any further
information you need or questions you might want to ask
your professional carers (e.g. your doctor, nurse or social
worker).
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ROLE NAME CONTACT DETAILS
Continuing Care Manager
RightCare Out of Hours GP
Occupational Therapist
Speech Therapist
Advance Care Planning Discussions If you are someone who likes to plan ahead you might want
to talk with your doctor and nurse about your care options
and your wishes. The aim of an Advance Care Planning
(ACP) discussion is to develop a better understanding of you
and to record your priorities, needs and wishes.
There are three ways you can formalise an ACP discussion:
1. An Advance Statement is a written record that lets
people know about your views and wishes. Although not
legally binding, an advance statement is the easiest way to
record your wishes.
2. An Advanced Decision to Refuse Treatment (ADRT) is
a simple way to refuse certain treatments. This used to be
called a “living will”.
3. A Lasting Power of Attorney (LPA) is a person you trust
who you choose to act on your behalf with your finances or
make decisions about your health care if you are unable to.
There are more details about advance care plans, including
an example of an advance statement and ARDT, in the
following pages.
Please be assured, the DNACPR form only applies to
cardiopulmonary arrest, it does not apply to other
treatments, particularly treatments to keep you comfortable.
If you have not indicated your wishes, your healthcare team
will decide whether CPR is an appropriate treatment having
considered your current state of health and medical
problems. If your nurse or doctor thinks CPR is unlikely to
be successful they will discuss with you why CPR would be
an inappropriate treatment.
The Dying Matters Coalition is working to encourage
people to talk about their wishes towards the end of their
lives, including where they want to die and their funeral
plans with friends, family and loved ones.
The website offers helpful
advice in this area
www.dyingmatters.org
Do No Attempt Cardiopulmonary Resuscitation (DNACPR) Cardiopulmonary resuscitation (CPR) is the emergency
treatment that is used to try to restart someone’s heart and
breathing.
It involves cardiac massage (repeatedly pushing down very
firmly on the chest), artificially inflating the lungs through a
mask over the nose and mouth, and electric shocks to try to
restart the heart.
This may be successful if someone has had a heart attack,
but is rarely successful if someone has a serious illness and
is nearing the end of their life.
Even in hospital only three out of twenty people survive long
enough to go home after CPR. Sadly, success at home is
much lower and many people never get back to the level of
health they previously enjoyed.
If you know that you do not want CPR, you can inform your
doctor or nurse who will ensure that your wishes are
respected. A ‘Do Not Attempt Cardiopulmonary
Resuscitation’ (DNACPR) form can be completed and kept
within this folder to inform other healthcare professionals,
including Ambulance teams, of that decision.
Examples of issues you might want to think about and maybe write
down in your advance statement.
What is important to me at this time in my life?
What makes me happy? E.g. being at home, having my family round me.
What special things would I like to do? e.g. any un-fulfilled goals?
What religious/spiritual needs are important to me?
What lifestyle care is important to me?
How do I want to be cared for when I am approaching the end of my life?
Where do I want to be cared for at the end of my life?
What worries or concerns me?
Planning my future care
Example of an advance statement
How would you describe your illness?
I have advanced heart failure and diabetes.
Because of the tablets I take my kidneys don’t
work so well.
What is important to you at this stage of your life?
Not being breathless and incontinent
Being able to see my family and be at home
I don’t want to be going to pointless hospital
appointments.
What are your concerns or fears? Include what you would not want to happen to you.
I do not want my daughter having to wash and
dress me when I can’t do it myself.
I worry doctors will make decisions without
including me and I’m frightened my
symptoms will get out of hand.
Plan for your funeral
Thinking about your funeral need not be morbid.
In fact it can be very comforting for those left behind to know
they have given you the send off you wanted.
Some people invite a few friends round and have a
funeral planning party over a glass beer or wine. Some talk it
over with their family well in advance.
If you are finding it difficult to have these conversations with
your family, you can make some notes below:
Funeral director of choice …………………………………
Burial or cremation ……………………………………….
Dress code …………………………………………………
Songs and hymns …………………………………………
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Readings …………………………………………………..
Flowers or not ……………………………………………..
Donations ………………………………………………….
Your views may change over time and you can change what
you have written whenever you want.
Preferred Place of Care Have you considered, when the time comes, where you
would like to be cared for and die? Although it may not
always be possible to meet your preferences, if your wishes
are not known by your doctor or nurse, it is more likely you
could die in an acute hospital.
When the time comes, I would prefer to be cared for at..
1st Choice……………………………………..
2nd Choice ……………………………………
Date ……………………………………………
Preferred Place of Death
When the time comes, I would most prefer to die at
1st Choice …………………………………..
2nd Choice …………………………………..
Date …………………………………………..
You should check your preferred place of care and death reg-
ularly to make sure it says what you want.
If my condition deteriorates I would most like to be cared for at..
1st Choice HOME!
2nd Choice Hospice
Date 14th April 2013
Who would best know your wishes if you are unable to make these clear yourself?
Name Jeannie Green
Relationship Daughter
Contact details 07891 234567
If your condition deteriorated, how would you want to be cared for?
I want to be kept comfortable, if they can’t do
much for me in hospital then I want my GP to do
as much as possible for me at home.
Advance Decision to Refuse Treatment (ADRT)
You may have strong opinions about certain treatments that
you would not want. An ADRT is a way of refusing
specific medical treatments for a time in the future when you
may be too unwell to communicate your wishes. This can
include the right to refuse life sustaining treatment.
Before making an ADRT you should discuss the contents
with your doctor. Ensure that you are clear about the
treatments you wish to refuse and the specific
circumstances in which you would want to refuse them. It is
also important that you have a full understanding of the pos-
sibility of discomfort and putting your life at risk.
If you wish to refuse a specific treatment you will still be giv-
en good nursing care to ensure you are kept comfortable.
An ADRT must be put in writing, signed and witnessed.
You cannot use an ADRT to request a treatment that would
not be appropriate for your condition or demand any
treatment to accelerate death.
Putting your house in order
Most people are quite clear about what they would like to
happen to their money or possessions and many have even
thought about their own funeral.
Making a Will helps to avoid problems after someone has
died in relation to what happens to the allocation of personal
possessions. If there is no Will, the time taken to sort things
out can be lengthy and expensive. In addition, the outcome
may not be as you would wish.
You can write a will yourself, there are booklets and
will-writing packs available from banks and some shops and
supermarkets. Banks also offer will-writing services. It is
usually best to use a solicitor – at least to check what you
have written.
You may want to think about:
Who you would like to benefit from your will
What you would like them to receive
Arrangements for any dependents or pets
Who you would like to act as your executor
Lasting Power of Attorney (LPA)
Whilst you are able to make decisions you can set up an LPA
to give someone you trust the authority to make decisions on
your behalf.
There are two types of LPA :
1. Property and financial affairs LPA covers decisions
about your property, bills and money. Your property and
financial affairs, LPA can act on your behalf whilst you
are still capable.
2. Health and welfare LPA covers decisions about your
healthcare and personal welfare. The health and welfare
LPA will only come into effect when you are no longer
able to make your own decisions.
You can set up one or both LPAs. To do this you may visit a
solicitor who can complete the forms on your behalf but there
is likely to be a charge for this service.
You can complete the forms yourself and these are available
to download or order.
Online at - http://www.justice.gov.uk/forms/opg/lasting-
power-of-attorney
By telephone on 0300 456 0300
The ADRT is a legally binding refusal of specific treatments.
It only becomes valid once you lose the ability to make or
communicate those decisions to others.
If you make an ADRT, make sure you tell your family and
those close to you so they are aware of its contents. It is al-
so helpful to give a copy to your GP and hospital
Consultant.
REMEMBER, YOU CAN CHANGE YOUR MIND -
If you do so please destroy your copy of your ADRT and ask
everyone who has a copy to destroy theirs.
Review your ADRT regularly to make sure it is up to date
and reflects your wishes.
Advance Decision to Refuse Treatment (ADRT) Example
Name Frederick Green
Any distinguishing features
Bald, scar on right forearm
Address 68 Main Road,
Greenfield, GR88 9DC
Date of birth 11/08/1934
Telephone number
01230 987654
These are my advance decisions about my health care, in the event I cannot consent to treatment and replaces any previous decisions I have made.
In these specific circumstances:
If I have another stroke and cannot talk, swallow safe-
ly and I develop a chest infection
I wish to refuse the following treatments:
Any drip feeding, antibiotics and artificial feeding I would also wish to refuse life sustaining treatment “even if my life is at risk” such as:
Cardiopulmonary resuscitation
(restarting my heart or breathing)
Assisted ventilation (breathing)
Including by use of a machine
Artificial nutrition and hydration
(giving food or water by a route other than by mouth)
I have marked the boxes to show that these are specific treatments I do not want. I am aware I will be provided with basic care, support and comfort
Person to be contacted to discuss my wishes:
Name Jeannie Green Relationship Daughter
Address 309 Main Road, Greenfield, GR88 4WV
I have discussed this with Dr Oldman
Profession Care of the Elderly Specialist
Contact details Royal Greenfield Hospital
Date 15/04/2013 I give permission for this document to be discussed with my
relatives/carers YES NO - please circle one
My General Practitioner is : Dr Allison
Address The Green Medical Centre, Greenfield
Telephone 0123 456789
Maker’s signature
F Green Date of signature
22/04/2013
Witness
Name Andrew Grey Witness signature A Grey
Address 74 Main Road, Telephone 0789 234567
Greenfield Date 22/04/2013
Review: Date of review: Valid until: Signature Witness signature
