People who are unwell or have a life-limiting illness often spend time thinking about how they would like to be cared for if they don’t get better. They may want to consider how they would like to be cared for and where, the treatments available to them and what their preferences are.
We believe it is very important that people are given the choice to decide where they would like to be cared for at the end of their lives.
Many people would prefer to be cared for at home or in a hospice close to where they live. If you feel the same we may be able to help. We have Marie Curie Nurses across the UK who can give free hands-on care, during the day or overnight, to people in their own homes towards the end of their lives.
We also run nine hospices across the UK, which provide a safe and supportive environment for patients and families, and a range of specialist services to help them cope with their illnesses.
If you have specific wishes or preferences, it is a good idea to discuss these with your carers and family and think about putting them down in writing so people have a clear understanding of the type of care and treatments you would prefer. This may make it easier for them to understand and accept your decisions. One way of making people aware of your wishes is by a process called advanced care planning.
Advance care planning - sometimes referred to as a living will, advance decision, advance directive or advance statement - is about thinking ahead and talking to the people involved in your care such as your family, doctors or nurses. It is a time when you can express your views, preferences and wishes about the care you would like to receive.
You may also want to think about setting up a Power of Attorney. This allows you to choose someone to make decisions on your behalf if you become unable to do so in the future.
Planning ahead to ensure your wishes are known can be especially important if you live on your own and do not get regular support from carers or family members.
In each UK country the legal name for each of these terms 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 their medical judgment and act in your best interests, whoever they talk to.
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 may be available from your District Nurse or GP surgery.
Do give healthcare professionals involved in your care, such as your GP, doctor or nurse a copy of any formal paperwork or tell them you have recorded your wishes in this way. Ask them to 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.
Age Concern can also provide you with information on Advance Decisions, Advance Statements and Living Wills which could be useful for any age group.
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.
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:
Information about Lasting Powers of Attorney is available in the leaflet Making decisions... about your health, welfare or finances from the Office of the Public Guardian or phone 0845 330 2900 for a copy.
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.
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.
The Office of the Public Guardian (Scotland) provides guidelines and sample power of attorney paperwork or phone: 01324 678300 to request a copy.
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 or phone 028 9023 5111 for a copy.
Making a will ensures that your wishes will be followed after you die. If you don’t make one, your estate may go to people whom you never intended to benefit, while family, friends and organisations that you wanted to benefit will miss out.
Inheritance tax legislation means that if you don’t prepare properly more of your estate than necessary may go to the taxman. It is simple and inexpensive to have a Will drafted by a properly qualified professional. Last but not least, writing a Will offers you peace of mind.
Advice to help people approaching the end of their lives
Find out what our hospices offer for patients and their carers
How body and mind is affected as death approaches
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