Time to talk about death

Dandelions blowing in the wind in a meadow

Caring to the end

A guide to end of life care and beyond for unpaid carers in Surrey

Time to talk about death

Here’s an outline of why it is so important to talk openly and honestly about death and dying with the person you care for as well as other family members, including children and those with learning disabilities. The importance of early conversations with health and social care staff and issues of consent to share information are explored below:

Why is it time to talk?

Talking to each other within families about death is difficult. This can be for a number of reasons:

  • We don’t want to think about death, as it brings up uncomfortable emotions that we would prefer to avoid.
  • We are worried about starting a conversation in case it offends or upsets the person we care for.
  • We feel awkward about mentioning important personal issues such as using the toilet and keeping clean.
  • We don’t want to discuss financial issues in case we are seen as money-grabbing.

However, talking about dying and death as early on as possible is important as it gives the opportunity for everyone within the family to openly and honestly share what their worries and fears are connected with dying. It enables everyone to make informed choices together, to know what the person you care for needs and wants, and it can help with family relationships. Talking about death is an essential part of Advanced Care Planning as well as thinking about any care that could be needed and what type of treatment the person you care for would prefer not to have. Here are 6 tips about talking about death.

Talking to the person you care for

There may be a number of triggers which start a conversation about death with the person you care for. It may be a personal need or a family situation that has arisen, but most commonly it is in response to a terminal diagnosis being given and death is in the forefront of everyone’s mind.

You may find the opportunity to talk about death crops up at the most unexpected moment, for example when you are walking in the park or sitting down having a meal together. But often you or another trusted family member may need to start the conversation and guide it.  Crucially, it is important to remember there is not a right or wrong way to have the conversation as everyone is different. Do what feels right for you. 

Things to think about

  1. Have the conversation as soon as possible and before it is too late. The person you care for may lose their ability to express their wishes unexpectedly. Spot the signs of declining mental capacity. Visit the Alzheimers’s Society for advice on how to best communicate with someone with declining capacity. 
  2. Think in advance about what you want to achieve – this will help you to manage your anxiety and give you confidence.  See What does planning ahead involve? for the sorts of questions to ask.
  3. Don’t rush the conversation – it’s a process and may involve a number of shorter conversations. ‘Little and often’ may work best.
  4. Give some warning to the person you care for that you want to talk about end of life decisions so it doesn’t come as a complete shock. This could be some hints or ideas thrown into normal conversation.
  5. Find the right moment and place when you have plenty of time.  Create an open and welcoming environment.
  6. LISTEN as well as talk!  Don’t feel you have to fill in pauses or silences and let the person set the pace. For further information on how to listen well go to Dying Matters  
  7. Think about how best to carry out the conversation.   Sometimes the person you care for may feel less under pressure if you are not facing each other e.g. in the car together, or walking the dog. You can also write a letter or talk over the phone if this is easier. 
  8. Consider using some conversation cards or games. ​​
  9. Starting the conversation can be the hardest part.  Relate the conversation to familiar topics e.g. talking about a shared friend or something you came across in the news.  Look at some family photos to kick start a conversation.

    For further guidance and advice on how to have a conversation with the person you care for go to “Having the Care Conversation” Toolkit 

    If the person you care for doesn’t want to talk about death, further advice can be found – How to talk with someone who doesn’t want to talk.

Talking to other family members

Talking about death and dying with other members of the family can raise all kinds of issues and problems.  A terminal diagnosis can trigger a range of feelings including anger, fear and sadness and these may vary depending on the family member and their coping abilities.  Your family will also have its own history of relationships, dynamics and roles that can affect how individuals behave. As a result family conflict can be very common. For example:

  • the nature of the relationship with the dying person may differ between family members
  • those who live some distance away may not appreciate the level of deterioration of them and disagree with decisions made by those closer to the dying person
  • some family members may be accepting of what is happening whilst others may be in denial
  • some family members may be holding onto confidential information about the dying person which they cannot share and find this difficult
  • sibling rivalry can often emerge and create conflict and lack of trust

Things to think about

  1. Try and share responsibility.  It is sometimes difficult to do this if some family members live some distance away but try and divide roles up to match each person’s strengths, ability and emotional resilience.
  2. Meet as regularly as possible and hold family meetings so that you resolve issues in time.  These could be done face to face or using phone or video conferencing.  Make sure everyone is clear what has been agreed and who is doing what.
  3. Talk as openly and honestly as you can, making sure conversations are constructive. Avoid blaming statements and instead express how you feel. Listen to other family members’ feelings too.
  4. If you need help to resolve conflict consider getting a professional involved to help you work through issues as a family.  Consider who might be best, for example a professional involved in the dying person’s care who is from the primary health care team or hospice, or perhaps an advisor from a local voluntary organisation such as Action for Carers Surrey

Talking to children

Talking to children about a family member who is unwell and not able to get better from an illness is never an easy task. As parents we naturally want to protect our children from emotional pain and suffering. This natural parental urge can be difficult to balance with the desire to be honest and upfront about harsh realities, such as talking about death and dying.  Telling children in advance about the potential death of a family member or friend is beneficial because it:

  • Creates an environment of open and honest communication
  • Enables children to get factual information from you
  • Leaves less opportunity for children to imagine different or inaccurate explanations
  • Helps children make sense of the physical changes they see happening to a person who is unwell
  • Creates an opportunity for the ill person to play a role in preparing children for the possibility of their death
  • Allows time to put additional support systems in place, such as school counsellors and grief programmes, where available
  • Enables children to grieve with the adults in their lives, instead of alone and from the sidelines. You and other family members can help children understand that their emotions and those of others around them are valid, healthy and natural
  • Gives children the chance, when the death of a loved one is imminent, to say goodbye in a way that feels appropriate for them or to just be with that person with a shared knowing that their time together (at least physically) is limited
  • Enhances the trust between children and their family

Things to think about

  1. Think about what questions children may ask in your family so you can prepare your answers.
  2. Consider whether you need help to talk to children about a potential death. Local charity Jigsaw (South East) have a specialist service supporting children and their families who are facing the loss of a loved  one. Contact them on 01342 313895. A dedicated support worker can help you prepare to speak with your children and then make plans for how to support them once they have been told the news.  They liaise with the childrens’ schools, with parental consent, and help ensure each child receives all the support and guidance they require. They also offer 1:1 support for children to help them during the loss of their loved one and beyond.  Your local hospice may also be able to offer support to your family.  Go to our directory for further information.
  3. To help you with your conversations use further resources Winston’s Wish teamed up with Macmillan Cancer Support to produce a book for parents who are nearing the end of life to broach the subject with their child. Child Bereavement UK has useful information sheets and short videos to help you navigate how to talk to your children about death and dying. Daisy’s Dream has a good section on talking about serious illness. Child Bereavement UK has useful books that you can use to discuss the topic.

Talking to health and social care professionals

  • You and/or the person you care for may find it easier to ask a professional to be involved in discussions about death. Or it might be simply having the professional there that will give everyone more confidence to talk about death. Who that professional is will often depend on the person you care for and who they have most contact with, for example their GP, a social care worker or a palliative care nurse.
  • Many ‘end of life’ conversations take place in hospital, yet there are massive variations on the part of medical staff as to how and when conversations about dying take place. Unless doctors and ward staff state very clearly that a patient is dying or is at high risk of dying relatives and carers are often left in limbo. 
  • Consent to share information can also prove to be a barrier to families getting the information they need to get an honest and accurate picture. If the person you care for refuses to give consent to share certain information about their diagnosis and prognosis it does not prevent you talking to those professionals involved in their care about their general care needs and the impact on your own wellbeing.

Things to think about

  1. Ask for an honest, timely and clear conversation with those providing care about how sick the person is and expected timing of death. As distressing as it is, it is better to be ‘told how it is’. However it is important to recognise that it can be difficult for medical staff to be accurate about this.
  2. Ask for clarity about clinical terms and abbreviations. Ask for sufficient information to be provided in plain appropriate language.
  3. Do some research first so that you are prepared before the conversation and don’t be afraid to ask difficult questions.
  4. Sometimes it is not enough to be told the information just once, as it is difficult to come to terms with difficult news.  Don’t worry that you are wasting the professional’s time.  It is important you and the person you care for understand the information being given to you.
  5. Don’t accept unwillingness on the part of a professional to talk about death and dying.  If need be, ask to talk to someone else.

If you want to talk to a GP, make a double appointment so that you have enough time to have a good conversation.

Talking with people with learning disabilities

A person with a learning disability may need support to talk about death and dying or to make important decisions around their own end of life care.  They may need additional help, specific to their communication needs, to ask questions and to make sure their wishes and preferences are recorded. 

​A person with a learning disability in your family may also be involved in providing end of life care.  Marie Curie have developed a number of easy read booklets which will help a person with a learning disability talk about death and provide support to someone with a terminal illness. 

For more information about talking with people with learning disabilities and end of life planning Professor Irene Tuffrey-Wijne talks further at Tuffrey-Wijne.