End of life care

Planning for the future

End of life care refers to health care of those with a terminal condition which has become advanced, progressive and incurable. People often want to spend their last days at home and this is usually possible with the right planning and support.

More people are starting to make 'end of life plans' to make it easier for others to support, and carry out their wishes, when the time comes.

Your rights

You have the right to express your wishes about where you would like to receive care and where you want to die.

You can find more information on your rights to make decisions on the Compassion in Dying website

Talking to friends and family about end of life care

It goes against all of our instincts to plan for our death. Death can feel taboo, or scary. People have different attitudes towards death depending on their life experiences and culture. But talking about what you want today, makes it more likely that your wishes will be carried out in the future. It will also help your family to cope.

Talking about your end of life wishes:

  • Choose the right time, when the person you want to talk to it not rushed or stressed
  • Be totally open about how you feel from the start
  • You may need to reassure the other person that you are not ill, or withholding anything from them
  • Listen to what they are saying too

Talking to others about their end of life wishes:

  • Look for a sign that the other person is open to talking about the future. They might mention retirement, or someone they know dying.
  • You could start with a question: "have you ever wondered what would happen..."
  • Independent Age has more advice on having difficult conversations with a relative
Two people sitting on bench

Sometimes we worry about hurting others by having difficult conversations. But people are more often hurt by the conversations that didn't happen. 

Dying Matters has created a to do list around having conversations on end of life care.

End of life care plans

These have become more common, as more people aim to take control and have a 'good death'. 

This includes thinking about:

  • whether you want to be resuscitated
  • living wills and lasting power of attorney
  • decisions on treatments and interventions
  • funeral and burial plans

Find more information on end of life care plans on the Compassion in Dying website , and end of life planning on the Age UK website.

When someone is dying

  • If you know that someone is going to die, tell everyone so it doesn’t come as a shock.
  • Talk about death openly and honestly.
  • Support each other. Acknowledge people’s feelings and their different needs.
  • Don’t forget to look after yourself. Self-care is important.
  • If you can, find out about the persons wishes and funeral arrangements.
  • You may not be able to be with the person whilst they are ill of dying. Acknowledge how difficult this is. Connect with them via phone or video call if you can.

When someone has died

  • Acknowledge how difficult it is that you couldn’t be with the person before or after their death to say goodbye.
  • Let others know that the person has died.
  • Find other ways of saying goodbye and remembering the person.
  • If you cannot attend the funeral ask if people can follow the burial/cremation via a video link. If not, hold an event in your household that includes “funeral elements” such as music, photographs and readings. Things that remind you of the person. You could record this or do a video link so other family and friends can join you in remembering the person.
  • Take time to grieve.
  • Remember that people grieve differently.

The Money Advice Service has information about what to do when someone dies. If you are planning ahead, you may want to make sure that the people who will deal with your estate know where you keep relevant information like account numbers and other important papers.

Soul midwives

Also known as end-of-life doulas, we have them when we are born, so why not when we die? Soul midwives are non-medical, holistic companions. They help ensure that death is dignified and peacefuI. More information.

Death cafes

Held all around the world, death cafes aim to increase awareness of death, so we make the most of life. They offer a space to talk openly and confidentially about death, with coffee and cake. Find your nearest death cafe.

Further sources of support

NHS.UK: information on end of life care

Dying matters: raising awareness of dying, death and bereavement

Marie Curie: information on support for carers and Coronavirus (Covid-19) if you’re affected by terminal illness

Hospice UK: guidance on families caring for a dying relative at home with COVID-19

Arthur Rank: patient and family support including bereavement counselling

Downloadable easy read resources, including a guide called When Someone Dies from Coronavirus: a guide for families and carers, and a guide on supporting friends and family with bereavement – Bereavement: How other people can help.