Time to Talk

While it’s important for everyone to discuss their end-of-life wishes, here are a few groups of people who would benefit more immediately from having these conversations:

• People entering or in retirement age: Planning ahead and starting to talk with others about your plans, wishes and decisions for the future is a good, practical step to take, alongside ensuring your house is accessible and writing a Will.
  
  
• People caring for older adults or caring for people with life-limiting conditions: Supporting others to make their plans and wishes known can relieve some of the stress and burden on carers. You can be even more proactive and supportive by making your own plans and wishes at the same time. Work on them together!
  
  
• People with life-limiting conditions: Adjusting after a new diagnosis or change in prognosis may take some time. When you’re ready, having honest conversations about your future can help you plan for your best quality of life.

As the saying goes, the best day to plant a tree was twenty years ago. The next best day is today. Wherever you are in life, remember that ‘tomorrow starts today.’ Today is the best time to start planning for the future, with the reminder that you can always change your mind!

Conversations are the first step in having a plan. Start to talk with your friends, partner or support group. Start to talk with a solicitor about your Will. Start with what is the most important to you — eco-friendly caskets? Writing a Will? Making the home accessible? — and go from there, one step at a time.

Thinking about, talking about and telling others about your choices, values and preferences for your care at end of life is called advance care planning.

Discussing what you want with your loved ones, or with your GP or healthcare team, is an important part of advance care planning. It prepares you and others for a time when you may no longer be able to communicate those decisions.

Advance care planning protects you: We all value and prefer different things, so it’s important to first reflect on your own values and preferences, and then to share those thoughts with your friends, family and your healthcare team. When other people know what kind of treatment and care you want, you’re more likely to receive it. Advance care planning helps protect your choices, even if you are injured or ill and cannot express them.

Advance care planning protects those close to you: Without a record of your wishes and preferences, difficult decisions about your end of life are left to your healthcare team, not necessarily the people closest to you. They may advise on the best course of action, but it may cause conflict, guilt or confusion. Recording your wishes can reassure and comfort your loved ones that they’re respecting your wishes.

The Think Ahead Planning Pack is a practical tool and customisable guide for advance care planning. It guides you step-by-step through many of your options. It also provides you a place to record your preferences, your healthcare choices and many more topics related to your end-of-life and after-death care.

Download a Think Ahead Planning Pack or order a copy to be posted to you.

Here are some tips for having conversations about dying, death and bereavement with family and friends:

1. Start with someone you trust. Sometimes the people closest to us become frightened or upset when we talk about end of life, dying or grieving. It can be easier to speak with somebody who is open to talking and who is less affected emotionally by the conversation. This might be a friend, a neighbour or a professional such as your GP or counsellor.
   
   
2. Choose the right time and place. You might ask someone to come over for a cup of tea to talk about some things on your mind. You might invite them to the spot where you would like to have your ashes scattered. Or you might share a bottle of wine and make your plans at Christmastime. We’ve even heard of parents taking their kids on a drive, where they don’t have any choice but to listen! The right time and place varies for everybody, so plan when and where you will feel comfortable to express your wishes.
   
   
3. Use the media. Another way to bring up a conversation is after seeing something on a show or hearing something on the radio about death or grief. For example, you might be watching a movie in which someone is dying. You might ask your loved one, “What would you want in a situation like that?” We recommend Baz & Nancy’s Last Orders and Mary Kennedy: Fad Saoil. Or browse our previously recommended books and podcasts and collection of videos from our Arts and Cultural Engagement projects. Is there something that speaks to you? Use this as a conversation starting point.
   
   
4. Ask open questions. We suggest starting with the questions that are easiest to answer. You might ask, “If everything went perfectly, what would you like your end of life to be like?”, or “Tell me about a time someone died, and what went well or what went wrong? Did this make you think about what you would want?”

People have very different responses to conversations about end-of-life planning. Therefore, when you want another person to start thinking about what they want, you may face a variety of responses. Some people are grateful to have the topic brought up. Other people are very uncomfortable. Many people would prefer not to face the fact that we will all die one day.

Here are a few tips for having these conversations:

1. Start with your own planning. Start looking into the resources that you would want someone else to answer and start working on those pieces for yourself. This helps you understand what the process is and sends the message that this is something you’re doing together.
   
   
2. Start early and go slow. Planning ahead takes time, and helping others feel comfortable planning ahead takes time too. While everybody’s circumstances are different, ideally start the conversation before they are in a crisis. When you start the conversation, it may be short the first time. Come back to it again later, asking if they have thought about it anymore. Let them know your thoughts and why thinking ahead matters to you. If possible, bring up the conversation with their peers (siblings, friends, or neighbours), who may have a different outlook and can spark a conversation with them.
   
   
3. Understand what motivates them. Some people are motivated by making practical decisions and being in control of their future. Some are motivated by keeping their family out of conflict. And others may be motivated by a health issue. Your motivation and theirs might be different, and it’s important to focus the conversations on their values.

Advance care planning can include things like where you want to be cared for; what treatments you want or would not want; who you trust to look after your finances or medical care; what, if any, kind of funeral and burial you would like; and many more.

We detail many of these options on thinkahead.ie. For specific details on understanding your healthcare options, visit Understanding Your Healthcare Choices.

1. Listen. When somebody starts talking about their wishes for the future — anything from where they want to live, or what kind of treatments they would prefer, or about their funeral or burial ideas — listen. You might feel more comfortable brushing them off, telling them that they will be fine, or wondering aloud why they must be so pessimistic. But people know that they are ageing or are ill, or know that one day they will die. When you refuse to listen and talk with others about these topics, you’re telling them, “That’s not my problem.” We must all be willing to listen and talk to provide the right care through and after the end of life.
   
   
2. Offer to help find resources and information. Depending on the person’s wants and needs and your skill set, you might be the perfect person to help them find information to make their decisions. For example, you might:
   • Research common end-of-life treatments.
   • Research and bring them to visit nursing homes.
   • Connect them with the Healthy Age Friendly Homes.
   • Learn about creating an Enduring Power of Attorney.
   • Look into some options for pre-planning a funeral (or hosting a living wake!).

3. Follow up. It takes time to make a plan, and sometimes planning is easier discussed than finished. Ask them how their plan is coming along. Where are they getting stuck? What new decisions have they made? What needs to be updated? Who are they talking to?
   
   
4. Take notes or record your conversations. Taking notes on what a person has told you may help in many ways in the future, especially if there are different opinions on how to care for someone who only discussed their choices. You might also ask them if you can video or voice record your conversations, so others don’t doubt their decisions in the future. Having notes or a recording can help to alleviate conflict, ensure a person receives what they wished for, and give insight into decisions that are hard to plan ahead for.

In Ireland, up 100 people die every day and up to 10 people are significantly affected by every death. For the people we know, it’s easy for us to see they’re grieving and might need support — our colleague, a fellow student in class or college, our neighbour, our sister-in-law, our child’s friend whose granny has died.

But others coping with loss are harder to spot — the person with a life-limiting or terminal illness and their loved ones, the mother whose son has just been jailed for 25 years, the family whose son has a life-changing brain injury following a road traffic accident, someone whose dog has died.

Here are some ways you can help someone who’s grieving:

• Acknowledge their loss. Use phrases like “I’m so sorry” if you don’t know what to say.
• Encourage the person to talk if they want to.
• Offer practical support, such as putting out the bins, dropping in a meal, or minding the kids for a while.
• Check in on the person after the rituals are over. Grieving is a long process and doesn’t have an end date. Set a reminder for a month or two after the first big anniversary to check in on them (e.g., their loved one’s birthday).
• If you think it might help, encourage them to call the Bereavement Support Line. It’s a national freephone service available to any adult who is grieving: 1800 80 70 77, available Monday to Friday, 10 am – 1 pm.

Here are some things to avoid:

• Don’t use euphemisms (e.g., “She’s in a better place now.”). This can feel like minimising the loss, and this language can be very confusing to young children.
• Don’t pretend the death hasn’t happened or assume they’re “over it”.
• Don’t avoid someone who is grieving out of embarrassment or fear of upsetting them. They may believe you don’t care enough to sympathise with them.

For more bereavement advice and support, visit bereaved.ie.

It is very upsetting to know that a family member or friend will die. This can be a very difficult time for a child if they do not fully understand what is happening. It’s painful to see a child upset, but children do cope better with sad news when they are told the truth.

Who should tell the child? 

• Parents and guardians who care for their children every day are usually the best people to communicate the news.  

When is the best time? 

• Conversations should take place as early as possible in the illness to allow the information to sink in. Then the child can ask questions later, when they have had time to think. 
• Talking to them about illness should be an on-going process (the timing will depend on whether you are dealing with a sudden or long-term illness). Children find it hard to take in too much information at once, so break it down for them. Take small steps and add a little to the story each time. Avoid bed-time conversations if possible.

What to say: 

• Decide in advance what information you want to give, and in what words: both depend on their age and their ability to understand what is said. Different ages will need different levels of information. 
• A useful start can be to say you want to talk to them about the person who is sick. Be as honest as you can about what is happening to the person. It is usually helpful to say the name of the illness. Use simple, familiar words and communicate clearly without being rushed. 
• They need very clear language. Although it may be hard to use words such as ‘death’, these words can help children to understand. Children cannot infer meaning as adults do, and so need concrete language. 
• Avoid using the term ‘going to sleep’ to explain death. It is confusing and can make a child worry about bedtime. 
• If children are not told the truth about what is happening, then they will make up their own version of the story, which can cause misunderstanding and upset. 
• Let the child ask questions. Tell them who they can talk to if they have other questions. Children often need to ask a question several times before they can understand the answer. Repetition is important, especially for younger children. 

For more information on discussing a life-limiting illness with children, visit childhoodbereavement.ie.

It is natural that we want to shield our children from pain, but discussing the death of a loved one with children and young people is essential in supporting them to make some sense of what has happened. Bereaved children and young people need age-appropriate information, reassurance and to be heard after a loss. 

Who should tell the child? 

• News about a death is best given by the person closest to them like a parent, guardian or close relative.

When is the best time? 

• It is best to tell them as soon as possible. They will pick up on any changes in the home so they will likely already know something has happened. If we don’t discuss it with them, they can feel alone and confused. There is also a chance they could hear it from other people, which can be very confusing. 
• If they are not told the truth about what is happening, then they will make up their own version of the story, which can cause misunderstanding and upset. 
• Where possible, pick a time when the child is not tired and you are not rushed, unless the situation is sudden or unexpected. For example, if the death takes place during the night, it is better to wait until the morning when the child wakes up naturally.

What to say? 

• The conversation is going to bring up your own emotions. Remember it is ok for them to see you are upset too. 
• Decide in advance what information you want to give and in what words: both depend on their age and ability to understand what is said.  
• Use clear language they can understand such as ‘dead’ or ‘died’. Explain what being dead means. This helps the child to understand that the deceased’s body has stopped working and that, sadly, they cannot come back again. 
• Once you tell a child about a death, you will need to have ongoing conversations as the child takes in and processes the information.

Visit childhoodbereavement.ie to learn more about: 

• How children understand and react to grief by age and stage. 
• Having conversations about death with children.