Talking about dying
Talking about dying won’t bring it closer but may help you make the most of the time you have left. It is important to talk to your family and/or friends about dying. There may be things you want your family or friends to know.
Professionals involved in your care will ask how you wish to be supported and cared for and what and who matters to you, where you want to be cared for and as things change what types of care and treatment you might want to avoid.
This future planning, also known as advance care planning, is important to help healthcare professionals understand how you want to be treated if you require emergency care and treatment, such as if you stop breathing. This process is called resuscitation.
Advance care planning is a way of making sure healthcare professionals and your family and carers know how you wish to be treated if you are unable to make decisions for yourself.
Advance care planning
It can be useful to think about what information you would like to know and talk to your family and carers about, such as:
- if there is any treatment you do not want to receive
- where you would prefer to be cared for and wish to die
- what your preferences are after death, for example burial or cremation
- if there are any other matters which are important to you.
You may want to think about whether you need to put the following in place:
- a will – a legal document containing instructions about what should be done with money and property after death
- lasting power of attorney – the authority to act on another person’s behalf if they lose capacity in health or financial matters
- advance decision to refuse treatment – let your healthcare team know your wishes if you are not able to communicate them, see the section below called 'Respect'
- funeral plan – this might relieve the emotional burden from family, friends and carers when arranging the funeral.
ReSPECT (Recommended Summary Plan for Emergency Care and Treatment)
The ReSPECT process creates a personal plan for your care in emergency situations where you are not able to make decisions or express your wishes. You should talk to your GP or another health professional about the plan.
These decisions about future emergency care and treatment will be captured on a recommended summary plan for emergency care and treatment (ReSPECT) document.
This plan can be for anyone, but will be especially relevant for people who have complex health needs, people who are likely to be nearing the end of their lives, and people who are at risk of sudden deterioration. Some people will want to record their care and treatment preferences for other reasons.
Find out more at the Resuscitation Council website.
Watch Joe's ReSPECT journey
Talking to children
If you have children, it is best to talk openly about your condition as they often pick up on tension and strained emotions. The way children express themselves often depends on their age, however, children and young people of all ages need constant reassurance they are loved and they will continue to be cared for. Young children may communicate through play and drawings, whereas slightly older children may say and demonstrate what they are feeling without inhibition. Children aged seven to nine often contain their emotions and conceal them from others.
There is no easy way to talk about someone reaching the end of their life, however, there are highly skilled counsellors available who can help and school-aged children can often access support though school. You can find a wealth of information, advice and resources online and there are a variety of books which can help you explain and discuss dying and loss with children. There are also information leaflets available from local hospices and hospitals.
What you would like to achieve
Although it may be difficult and upsetting, it is important to have conversations with your family about your choices, such as:
- personal care and who will help with this
- where you would like to be cared for and die
- what you would like to happen after you have died
- if you have any wishes to donate tissue or your cornea.
It is important carers and family are able to talk to someone about how they feel and any worries they may have.