Information to help you care for someone at the end of their life and end on life care planning.
Caring for someone who is at the end of their life, or who has been diagnosed with a terminal illness such as cancer or motor neurone disease (MND) can be an upsetting, stressful and emotional time. On this page is information about making plans and what you can do to support someone you care for who is at the end of their life. There is also information about hospice care and organisations that can support you and details about the help available and what to do when someone you have cared for has died
End of life care may take place at home, in a care home, in hospital or a hospice. There is further information on the NHS website at www.nhs.uk/conditions/end-of-life-care
As the person you care for comes to the end of their life, you’ll want to make a plan so that they receive proper care. This will help you feel:
Their end of life care might involve an advance care plan or moving to a hospice. For much more information about both of these options, visit the Carers UK End of Life Planning page.
Ensuring the person you support has access to the right care at the end of their life
There are various decisions or plans you or the person you care for can put in place such as:
An Advance Care Plan. An Advance Care Plan is a record of someone’s wishes about their end of life care. Sometimes it’s called an Advance Statement or Statement of Wishes. It can include the following things:
The person you care for can make a statement of wishes by themselves, or with your support. An Advance Care Plan is not legally binding. Sometimes, people want to make decisions about treatment they receive should they lose mental capacity. This is called an Advance Decision or Living Will.
Find out more about how to make one on the NHS Advance Statement page.
Advance Decision / Living Will. This is a decision made by someone in the UK aged 18 or over with mental capacity to refuse life-sustaining treatment in the future. It is legally binding as long as you follow the procedures in the Mental Capacity Act. There is more information about Advance Decisions on the NHS website.
Lasting Powers of Attorney (LPA). This is a legal document that lets the person making it (the donor) appoint one or more people, known as attorneys, to make decisions on their behalf should they be unable to. There are two types of LPA – one covering health and welfare and another for property and financial affairs.
An LPA gives more control about what would happen to the person who made it if they have an accident or illness. You must be 18 or over and have mental capacity (the ability to make your own decisions) to make an LPA.
For more information about LPA’s and making one visit www.gov.uk/power-of-attorney
A Will – By making a will you (or the person you care for) can set out what happens to any money, property and possessions after death. If someone dies without a will, the law decides who gets what. You can find out more about making a will at www.gov.uk/make-will
If you’ve made an Advance Decision, Advance Statement or Lasting Power of Attorney, this you should make a note of this in your Care Plan.
If the person you care for is near the end of their life, health and social care workers might suggest they move to a hospice. There, they will receive care and support from experts in end of life care. This may include physical, emotional and spiritual care. Family and friends are normally very welcome in hospices.
Healthcare professionals will always discuss this option with you and the person you care for, before they make the move.
You can find out more about hospice care and find out the hospice local to the person who needs end of life care on the Hospice UK website. There is also information about moving to a hospice, visit the Carers UK End of Life Planning page.
Hertfordshire is fortunate to have several good hospice services available for its residents – either provided in the county or in neighbouring counties such as Essex. These hospices can provide palliative care and emotional support in a range of settings, including day services, in-patient units and help in the home. It is best to discuss options with a medical professional involved in the care of the person you look after before seeking out hospice services, though most hospices do accept self-referrals. A list of the hospices in Hertfordshire or just outside the county and supporting Hertfordshire residents is below. Visit their websites to find out more about their services or contact them to find out how they can support you.
The Anne Robson Trust is a Hertfordshire based charity that aims to ensure people are with their loved ones when they die.
They give support to families in hospitals. And their free helpline offers practical and emotional support to those facing the loss of a loved one.
Find out more on their website Anne Robson Trust or call their helpline on 0808 801 0688.
Beacon is a not from profit organisation that helps people navigate NHS Continuing Healthcare. Trained staff in the Information and Advice Service provide up to 90 minutes of free advice on issues related to NHS Continuing Healthcare. For more information visit www.beaconchc.co.uk or call 0345 548 0300.
The National Association of Funeral Directors can advise on arranging funerals. It gives information on the services provided by funeral directors and advises on what to do after someone has died. It also has a list of funeral directors across the UK.
Find out more at www.nafd.org.uk or call 0121 711 1343.
UK Government – has various sources of information around benefits and what to do when someone dies, including the Tell Us Once service (www.gov.uk/after-a-death/organisations-you-need-to-contact-and-tell-us-once or call 0800 085 7308.)