Plan future care
Many of us will eventually need to be cared for. And some of us might be unable to make decisions for ourselves. Thinking about these issues and making our wishes and preferences known in advance of becoming ill or dying, can bring peace of mind for ourselves and those people close to us.
One way of making wishes and preferences known is by a process called Advance Care Planning (ACP).
Advance Care Planning ▾
Advance Care Planning may include ;
- Exploring options about how and where we want to be cared for at the end of our life. Is it at home, in a hospital or somewhere else? What help is available to help us stay in our homes? Finding out about all the options is often a good place to start.
- Identifying wishes and preferences. This may include the medical, social and spiritual support we want? Seemingly small things like our appearance, the food we like and the music we listen to, matter a lot. It’s about being cared for with dignity and respect.
- Identifying who should be consulted on your behalf and provide information about your wishes, feelings and values. If in the future you are unable to make a decision for yourself, a health or social care professional would, if possible, consult with the person you named. Although this person cannot make decisions for you, they can provide information about you.
- Refusing specific treatment - see section below.
- Appointing someone to make decisions for you by using a Lasting Power of Attorney - see section below.
- Talking is important. Plans and wishes are more likely to be carried out if we talk with people close to us. See Talk to love ones here.
- Developing a My Wishes Folder will enable you to write down and store important information about your life.
It is recommended that anything you have written down should be signed and dated. A ‘statement of wishes’ unlike, for example, a Lasting Power of Attorney is not legally binding. However, health professionals are obliged to take this information into account when making best interest decisions for a person who later loses capacity to be involved in decisions.
A booklet called 'Planning for your future care' explains advance care planning and outlines the different options available to people when planning for their end of life care.
Key points - advance care planning
- It’s optional – you don’t have to carry out advance care planning
- Include anything that is important to you no matter how trivial it seems
- If your wishes are in writing or if you have a Lasting Power of Attorney, keep a copy of the documentation safe and provide copies to those who need to know your wishes e.g. family member, carer, nurse or doctor
- Remember you can change your mind at any time.
Supporting health and social care professionals
ePAIGE is an online resource to signpost health and social care professionals to resources during the last year of life of individuals they are caring for and provide support management including bereavement care information and useful contact numbers. There are also pathways to support professionals in decision making on symptom management, financial support and advance care planning. For more information, visit the ePAIGE website.
Refusing specific treatment ▾
Advance decision to refuse treatment
An advance decision to refuse treatment (ADRT) - sometimes called a living will or advance directive - is a decision an individual can make to refuse a specific type of treatment at some time in the future. The ADRT should be observed if the individual can’t make his or her own decision at the time the treatment becomes relevant. An ADRT can be made by anyone aged 18 years and above and who is deemed to have the mental capacity to do so.
There are rules that have to be followed if a person wishes to refuse treatment that is potentially life sustaining. The refusal has to be about a specific treatment in a specific circumstance and often has to described in a specific way. For example, an advance decision to refuse ventilation-type treatment must be put in writing, signed and witnessed and include the statement ‘even if life is at risk as a result’.
The 'My Advance Decision to Refuse Treatment' form can downloaded by clicking here.
The NHS National End of Life Care Programme recommends that the decisions be discussed with a GP or other healthcare professional. Some people assume they need a solicitor to make an ADRT - this is not the case.
A useful website is the NHS's Advance Decision To Refuse treatment.aspx site.
Decisions about resuscitation
You or someone you love may have been, or in the future might be, asked by a health care worker about your feelings regarding cardio-pulmonary resuscitation (CPR). Or you may be considering CPR as part of your future care planning even if you do not have an illness.
CPR is a procedure which can be performed to restart someone’s heart and breathing in an emergency situation. This procedure involves:
- Repeatedly pushing down very firmly on the chest using electric shocks to try to restart the heart
- ‘Mouth-to-mouth’ breathing; and
- Inflating the lungs through a mask over the nose and mouth or using a tube inserted into the windpipe.
Doctors and nurses are encouraged to involve a person and those important to them in decisions made about resuscitation unless a person chooses not to discuss, or they are incapable of participating in the discussion e.g. someone with advanced dementia. Regardless of how prepared you are to have the conversation it can be very difficult and emotive and therefore it is important that this topic is handled in a sensitive and respectful way by those involved.
The important thing to remember is that you don’t have to talk about resuscitation if you don’t want to, or you can put the discussion off if you feel you are being asked to decide too much too quickly. It is however important for you to understand that if you have a life threatening condition and you choose not to discuss CPR, a time may subsequently come where the doctor in charge of your care may need to decide whether or not resuscitation should be attempted, taking into account your medical condition, the chances of you surviving CPR, and the things you have said to them.
Should you feel that you have not had the chance to have a proper discussion or if you are not happy with the discussions you have had you should speak with a doctor or nurse involved in your care. It is important that you keep asking questions until you understand all that you wish to know. Alternatively you can view this information leaflet, which contains many frequently asked questions.
Lasting Power of Attorney ▾
Lasting Power of Attorney
You may choose to give another person legal authority (making them an ‘Attorney’) to make decisions on your behalf if a time comes that you are not able to make your own decisions. Your attorney can be a relative, a friend or a solicitor. There are two types of Lasting Power of Attorney (LPA):
- A Property and Financial Affairs LPA covers decisions about the donor’s property and money.
- A Personal Welfare LPA covers decisions about the donor’s healthcare and personal welfare. This can inlcude allowing someone else to make decisions on your behalf about life sustaining treatment.
It costs £110 to register each LPA. Registering both types costs £220.
If the person who makes the LPA receives certain means-tested benefits, they will not have to pay anything; or if their income before tax is less than £12,000 a year, they will have to pay half of the cost.
Solicitors can advise and help with a LPA but they will charge for their expert help.
Information about how to make, register or end a LPA is available here.
Organ Donation ▾
Have you thought about helping someone after your death by registering as an organ donor? You can also donate your pacemaker.
More than 10,000 people in the UK need an organ transplant that could save or improve their lives. Most are waiting for a kidney, heart, lung or liver transplant. However, less than 4,000 organ transplants are carried out each year in the UK. One donor can save and improve the lives of up to nine people.
The NHS Organ Donor Register is a confidential list of people who are willing to become donors after their death.
You can join the Organ Donor Register here or by:
Calling NHS Blood and Transplant on 0300 123 23 23
When you apply for or renew a driving license
When you apply for an European Health Insurance Card (EHIC)
When you register with a new GP
When you register it is important that you tell those closest to you about your decision as organ and tissue donation will be discussed with them in the event of your death.
An individual’s decision to become a donor or not should always be respected.
Pacemaker donation ▾
You can now donate your pacemaker!
When a pacemaker user dies, the device is buried with them, or, if the deceased chooses to be cremated, it is discarded either as medical waste or placed in boxes in funeral parlors and mortuaries and forgotten. In the UK, approximately 35,000 individuals undergo pacemaker implant surgery each year.
In the developing world around 2 million people die every year due to inaccessibility to medical healthcare and the prohibitive cost of lifesaving devices and a pacemaker surgery.
Pace4Life is an innovative project whereby pacemakers can be donated and sent to people who need them in developing countries.
To find out more and to register, visit Pace4Life.