Making decisions about your future care
A time may come when you are no longer able to make decisions or express your wishes about your care and treatment. You can plan for this by formally stating your wishes while you are still able to do so, preferably in writing.
One way is to make what is often referred to as a living will, advance decision, advance directive or advance statement.
An alternative is to set up a Power of Attorney in which you choose someone to make decisions on your behalf if you become unable to do so in the future.
In each UK country the legal name for each of these is different, as is the paperwork.
If you record your wishes in writing in some way, ask for a copy to be added to your medical records or care plan. Even if you don’t have anything in writing, you can ask for your wishes to be added to your records.
If your wishes are not known, your doctor may consult your next of kin. Life partners may not be considered next of kin unless you are married or in a civil partnership. Your doctor is obliged to use his or her medical judgment and act in your best interests, whoever they talk to.
Making decisions in advance
You can decide what treatments you would want to refuse in specific circumstances but you cannot insist on receiving specific treatment (for instance, you cannot insist that a doctor resuscitate you if it is against their medical judgment).
You will have to state what treatments you wish to refuse, and in which circumstances your refusal of treatment will apply. For instance, you might state that if you are terminally ill and expected to die within a few days, you do not want to be treated with antibiotics if you get an infection. You cannot rule out all medical treatment for any condition that might arise.
You are not expected to use medical terms. Your GP or another healthcare professional can advise you about what to include and what may be relevant in your situation. Standard forms to help you, or guide your discussion with a healthcare professional, may be available from your District Nurse or GP surgery.
Do give the relevant healthcare professionals involved in your care (eg your GP or consultant) a copy of any formal paperwork or tell them you have recorded your wishes in this way. If you have a District Nurse it is a good idea to discuss this with them and put a copy in your care plan. If you update your wishes in writing make sure everyone who needs it gets a new copy.
If your health changes significantly you may find it useful to review your existing paperwork. It is a good idea to review your paperwork on a regular basis even if there are no changes, just to make sure it still reflects your wishes.
Try to discuss your choices with your family. This may make it easier for them to understand and accept your decisions. It can be difficult to discuss your wishes with people who are close to you. If you put your wishes in writing your family can see what you would like if you become unable to tell them.
England and Wales
- You can use an Advance Decision to state your wishes about refusing certain forms of medical treatment in certain situations. An Advance Decision does not have to be in writing unless it includes your wishes relating to treatment that could keep you alive, but it is helpful if it is. An Advance Decision to refuse treatment is legally binding if you follow some specific requirements.
- You can use an Advance Statement to state your wishes about any other aspects of your general care and treatment, including non-medical issues such as dietary preferences. An Advance Statement can also reflect your beliefs and values so people know what is important to you. An advance statement is not legally binding, but should be taken into account by your doctor and family.
For more information, Age Concern has an information sheet on Advance Decisions, Advance Statements and Living Wills which could be useful for any age group.
Call freephone: 0800 009 966 for a paper copy, or visit:
www.ageconcern.org.uk and select ‘information and advice’ then ‘information sheets’ then ‘advance decisions, advance statements and living wills-IS5’.
If you drew up paperwork before October 2007, you are strongly advised to review it because the Mental Capacity Act is now in force and may affect it.”
Nominating someone to make decisions on your behalf
You can choose a person to make decisions on your behalf if you are unable to do so in the future by setting up a:
- Personal Welfare LPA (for healthcare matters)
- Property and Affairs LPA (for financial matters)
Information about LPAs is available in the leaflet Making decisions … about your health, welfare or finances from the Office of the Public Guardian.
Phone 0845 330 2900 for a paper copy, or visit:
www.publicguardian.gov.uk and select ‘forms and booklets’ then ‘additional publications and newsletters’ then scroll down to Mental Capacity Act booklets and select OPG601: About your health, welfare or finance - who decides when you can’t?
If you drew up an Enduring Power of Attorney in the past, please note that this would only cover financial issues, and you may wish to add to or replace it with a Personal Welfare LPA.
Scotland
An Advance Directive sets out your wishes regarding future care and treatment. It is not legally binding but your wishes would be taken into account by your family and doctors if you became unable to communicate.
Nominating someone to make decisions on your behalf
You can choose a person to make decisions on your behalf if you are unable to do so in the future by setting up a:
- Welfare Power of Attorney (for health and welfare decisions)
- Continuing Power of Attorney (for financial decisions)
The Office of the Public Guardian (Scotland) provides guidelines and sample power of attorney paperwork.
Phone 01324 678300 to request a paper copy or visit:
www.publicguardian-scotland.gov.uk then select ‘what we do’ then select ‘sample power of attorney’.
Northern Ireland
There is currently no legislation covering Advance Decisions, Advance Statements or living wills in Northern Ireland. However, your doctor will still act in your best interests when planning your care and treatment.
At present you can set up an Enduring Power of Attorney which relates to your financial affairs. This does not cover welfare or healthcare issues.
Further information is available in the leaflet Enduring Power of Attorney: planning for the future, produced by the Northern Ireland Court Service.
Phone 028 9023 5111 for a paper copy, or visit:
www.courtsni.gov.uk and select ‘useful leaflets’ then ‘office of care and protection’ then ‘Enduring Power of Attorney: planning for the future’.
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Funeral planning
Planning your own funeral or discussing what you would like means you can ensure that everyone knows what your wishes are. If you don’t discuss your wishes during your lifetime, people may not know what your preferences were, and your funeral may end up being very different from what you would have chosen. While you or your loved ones may feel that it is inappropriate to plan or even discuss your funeral while you are alive, in retrospect most people find it was very helpful.
You may feel uncomfortable at first discussing it but people often become more comfortable with the subject as time goes on, and can even take pleasure from deciding what music to have and where to be buried.
If your loved ones really don’t want to discuss it, you could write down your wishes so they have something to consult after your death.
There is plenty of information available (including our Bereavement Booklet, which provides an overview of funeral planning and lists other sources of information) but when people have just been bereaved they may not have the time or will to start tracking down and reading books. If you discuss your wishes for your funeral before you die, your loved ones will be clear about what you want and will feel more prepared.
Decisions can be made without time pressures and there will be time to make special arrangements. And you will be involved in the decisions about how to celebrate your life.
