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Opening up the conversation about dying and how to cope isn’t straightforward. So more people are exploring the support that’s available to them outside of their medical care, when faced with a terminal diagnosis. Here, we talk about the role of an end-of-life doula, and how they can offer practical and emotional support to someone with a terminal illness.

What is an end-of-life doula?

An end-of-life doula, also known as a death doula, is a person who supports someone who’s been diagnosed with a terminal illness. They’ll also support those closest to the person who’s dying.

An end-of-life doula is not a medical professional and does not replace medical care in any way. Instead, they’re there to support the person emotionally and psychologically.

Typically, a doula is associated with birth, and is there to support someone during pregnancy and childbirth. The term comes from the Greek doulē’, which means “female servant”. But it’s been extended to include someone who provides guidance and support at the end of life too. And despite its original meaning, a doula can be any gender.

What does an end-of-life doula do?

An end-of-life doula will adapt their support depending on the needs of the person they’re helping. For example, one person with a terminal illness might want more practical support like help with household chores so that their family has more time to spend with them. Another person might prefer someone to talk to and provide them with emotional support. Each person will have different needs. So, a death doula will do what’s asked of them.

Here are some things that an end-of-life doula might help someone with as they come to terms with their diagnosis:

  • Provide practical support such as preparing food, household chores, shopping, and running errands.
  • Provide emotional support, taking the time to sit with the person and talk to them to help them process what’s happening.
  • Take the time needed to talk about death with the person in a way that helps them cope or to simply be a companion.
  • Be a point of contact for other care providers, such as doctors, carers, and consultants and help co-ordinate any appointments.
  • Organise respite care so that family members caring for the person can take some time for themselves.
  • Advocate for the person and their final wishes – this could be making sure that their religious beliefs are respected or that their end-of-life care is carried out as requested. They can also help take care of legal paperwork like advance decisions and amending wills.
  • Be there to provide emotional support to close family members and friends before and after the person’s death.

Is there a religious aspect to end-of-life care from a doula?

End-of-life doulas will never push their own religious beliefs onto you or your family members. They’ll always be impartial and non-judgemental. They’ll respect your beliefs and help you carry out any religious customs you’d like. If you’re not a religious person, then they’ll respect that too. More specifically, an end-of-life doula can help with any rituals at the time of death to make sure that the right cultural traditions are carried out and the person is treated with respect.

Can you only have an end-of-life doula if you’re at home?

No. An end-of-life doula can help you at home, in a hospice, or in a hospital. They’ll offer support wherever you need them.

How long does a death doula provide you with support?

A death doula will provide you with support as and when you request it. So, if you feel you and your family need more help as soon as you receive a medical diagnosis, you can request it then. Some people might ask for help from a death doula when they’re getting closer to the end of their life. It varies depending on when you would like support from your doula.

How much does an end-of-life doula cost?

This will depend on how much your end-of-life doula charges and how long you need their help. Some doulas will work on a voluntary basis. But if you need a lot of support you may need to pay for this.

Is an end-of-life doula right for you?

Choosing the support of an end-of-life doula is a very personal decision to make. And it may also depend on whether you feel a connection with the person. If you’ve been diagnosed with a terminal illness and you’d like more emotional or practical support, it could help you cope. And it could also provide your family with come support and coping mechanisms too. It can give them the space they need to say goodbye, and the practical help they need to do so.

To see if getting support from a death doula is the right choice for you, you can always have a chat with several doulas first. This will help you figure out what your expectations are and what they can help you with. And it could help you figure out if it’s the right choice for you.

How to find a death doula

Making sure you find a death doula that knows what support you specifically need is important. And trust is a factor. Because this type of work isn’t regulated, it’s best to get advice from either your hospice or hospital to see if they have relationships with any experienced doulas.

Or you can contact End of Life Doula UK. They have members who’ve gone through training to become a doula via Living Well Dying Well (LWDW) and can help you find someone right for you. These non-profit organisations can also help answer any questions you might have about getting support from an end-of-life doula.

Struggling to cope?

If you need to speak to someone Cruse Bereavement Care offer free counselling for those who are struggling to cope with loss and bereavement. You can call their helpline on 0808 808 1677.