Talking about death & dying with people you love (and with kids)

The National Institute on Aging (NIA) notes that family and friends sometimes stop visiting because they don’t know what to say, or pull back because they are already grieving. This can add to a dying person’s sense of isolation.

Simply being there, and being willing to talk about what is happening, can ease that loneliness.

In the same 2008 study, people who had talked about end-of-life care were less likely to receive aggressive treatments like breathing machines in their last week, and more likely to start hospice earlier.

The “Planning ahead: wishes, advance directives & legacy” guide covers putting wishes in writing and naming someone to speak for you.

The National Cancer Institute (NCI) describes research from Japan in which family members who felt they had “unfinished business” with a dying relative had more depression and grief afterwards. Not talking enough about death and end-of-life wishes can add to that feeling.

Swedish researchers asked parents whose child had died of cancer whether they had talked with their child about death. None of the 147 parents who talked about it regretted it. More than 1 in 4 who didn’t talk later wished they had.

Every family is different, and nobody should be pushed. But this research suggests honest talk is far more often a comfort than a regret.

Talking about dying can stir up your own fears and old losses. Take a few slow breaths before you begin. You can also talk it through first with a friend, counselor, chaplain or social worker.

It’s fine to cry during the conversation. Tears show love. They don’t mean you’ve done it wrong.

Settings that often help

• A quiet room with the TV and phones off
• A walk or a long drive, side by side
• After a family meal
• When the person who is ill has the most energy in the day

Many short talks are often easier than one big one. You can stop and come back to it another day.

Researchers have found cultural differences in how families approach telling the truth about illness, using life-prolonging treatment, and making decisions. In some families, the individual decides. In others, the whole family decides together.

Some families prefer not to name death directly with the person who is ill. Honoring the person’s own beliefs and values matters more than following one model.

The NIA notes that many people find comfort in their faith near the end of life, while others struggle with their beliefs. Praying, reading religious texts, listening to religious music, or talking with a minister, priest, rabbi or imam can help.

If you don’t share the same beliefs, you can still listen with respect. Ask, “What gives you comfort right now?”

Some people want to talk about dying in detail. Others want to talk about anything else. Both are okay. You can open the door and let them choose whether to walk through it.

Gentle check-ins

• “Is this an okay time to talk about how you’re feeling?”
• “Would you like to talk about it, or would you rather not today?”
• “I’m here whenever you want to talk.”

Ways to begin

• “I know this is hard, but I want us to be able to talk about it.”
• “I’ve been thinking about what matters most to me now.”
• “I don’t want you to have to guess what I’d want.”
• “I’m not giving up. I just want us to be ready.”

Your family may be waiting for a sign from you. Hearing that you want to talk can bring them relief.

Ways to begin

• “How are you feeling about everything that’s happening?”
• “What’s been on your mind lately?”
• “What worries you most right now?”
• “Is there anything you want me to know, or anything you’d like to do?”

It is often easier to talk about dying when no one is in crisis. A film, a news story, a friend’s loss or a birthday can be a natural opening: “That made me think. What would you want, if it were you?”

The Conversation Project, part of the nonprofit Institute for Healthcare Improvement, offers a free Conversation Starter Guide in English, Spanish, Portuguese and Chinese.

Changing the subject is often a sign that someone isn’t ready yet. You don’t need to push. A simple “Okay. Just know I’m here whenever you want to talk” keeps the door open.

Try again another day, perhaps in a different setting or with a different person in the family leading.

The NIA says a dying person may fear the unknown, worry about the people they will leave behind, or be afraid of being alone at the very end.

Many also worry about pain or about being a burden. Your care team can help manage pain and comfort, and it can help to ask them together.

Someone who is dying may worry about who will take care of things when they are gone. The NIA suggests offering specific reassurance, like promising to water their plants or naming who will care for their pet.

Things people often want settled

• What happens to the home
• Whether bills and paperwork are handled
• Who will check on a partner or parent
• Who will look after children, pets or plants

Hope often changes shape near the end of life. It may move from hope for a cure to hope for comfort, a good day, a visit, or a peaceful death. You don’t have to choose between hope and honesty.

The “Anticipatory grief: grieving before a loss” guide has more on holding hope and grief at the same time.

The NIA says dying people sometimes seem to see or talk to someone who isn’t there, or describe dreams of meeting relatives who have died. These are often comforting to them. Try not to correct them or say they are imagining things.

Someone who has been confused may suddenly seem clear. Make the most of these moments, while understanding they are usually temporary.

Questions that can help

• “Where would you most like to be?”
• “Who would you like with you?”
• “Is there music, a prayer or a ritual you’d want?”
• “What would a good day look like for you now?”
• “Is there anything you’d want for your funeral or memorial?”

The “Choosing care near the end of life: questions to ask” guide helps turn these wishes into questions for doctors and hospices.

If someone cries, you can simply stay close. Holding a hand or sitting quietly together can say more than words. The NIA suggests physical contact, like holding hands or a gentle massage, as a way to comfort a dying person.

Silence is often when people gather the courage to say what matters most.

A dying person, or a family member, may lash out. Try not to take it personally. You might say, “It makes sense to feel angry. This is so unfair.”

If a conversation becomes too heated, it’s okay to pause and try again later.

Some relatives may refuse to talk about dying, or disagree strongly about care. A hospice or hospital social worker, chaplain or palliative care team can help lead a family meeting.

Things that can help

• Ask what each person is most afraid of
• Keep the dying person’s own wishes at the center
• Let someone outside the family guide the talk
• Share written wishes so there is less guessing

Some people choose not to hear details about their illness. In some cultures, families handle much of this information together. That can be a valid choice.

You can still talk about love, memories and what matters to them, without talking about medical facts.

People facing serious illness can feel hopeless at times. If someone says they want to end their life, or you’re worried about their safety, take it seriously. Tell their care team.

In the U.S., you can call or text 988 any time to talk with a trained crisis counselor, for them or for yourself. If a life is in immediate danger, call 911.

Dignity therapy is a short form of therapy in which a person near the end of life is interviewed about their life and what they want loved ones to know. Their words become a written document for their family.

In a trial of 441 people, those who did dignity therapy were more likely to say it helped, improved their quality of life and sense of dignity, and was helpful to their family. It did not lower distress overall.

Questions to ask

• “When did you feel most alive?”
• “What are you proudest of?”
• “What do you want us to remember about you?”
• “What have you learned that you’d want to pass on?”

The NIA suggests family and friends tell the dying person how much the relationship has meant. Adult children can share how a parent influenced their lives. Grandchildren can say what a grandparent means to them.

Some people also find peace in resolving old disagreements, or in sharing memories of good times.

People who can’t be there in person can send a video, audio message or letter to be read aloud. The NIA also suggests writing down some of the things said, both by and to the dying person. Later, those words can be a great comfort.

Ideas

• A family recipe written in their own words
• A recording of a favorite story, song or prayer
• A short video message for each grandchild
• Letters for future birthdays, graduations or weddings

Some people like to choose who receives a watch, a book, a piece of jewelry or a photo, and to say why. These choices can spark stories and become treasured memories.

The “Planning ahead: wishes, advance directives & legacy” guide has more legacy project ideas.

Phrases like “passed away,” “went to sleep” or “going away” can confuse children. The Dougy Center notes that a young child told “Dad passed away” may expect him to come back.

Name the illness if there is one. If you only say the person is “sick,” a child may worry that anyone who gets sick will die.

Key messages

• All your feelings are okay
• It’s not your fault. Nothing you said or did caused this
• You can ask me anything, any time
• You can’t catch this illness
• You will be looked after, and here is who will care for you

Children often ask, “What will happen to me?”, “Who will take care of me?” and “Are you going to die too?” Reassure them as much as you can without covering up the truth.

A child might ask questions right away, or go quiet and come back later. You may need to answer the same questions many times.

It’s okay to say “I don’t know.” If you can find out, tell them you’ll try.

MedlinePlus says most experts find it more upsetting for children to be sent away to spare them. They usually do better staying close at home.

Keeping school, activities and time with friends going as much as possible can help. Let teachers or school counselors know what is happening.

Children may want to play and take breaks, especially when adults around them are grieving intensely. The Dougy Center says having fun or laughing is not disrespectful to the person who died.

Drawing, play and stories can help children show feelings they can’t yet put into words.

The American Academy of Pediatrics (AAP) says preschoolers typically see death as temporary. Avoid saying the person has “gone to sleep,” which can make children afraid of sleeping.

For very young children, talk about the body not working anymore. For example: “When Grandma dies, she will stop breathing. She won’t eat or talk anymore.”

Simple ideas young children can learn

• Death can’t be undone, even though cartoon characters come back
• When someone dies, their body stops working and they don’t feel pain or hunger
• Everything that lives dies someday
• It isn’t anyone’s fault

The AAP says most children understand death by about age 7, but knowing something is different from accepting it. Listening matters more than finding perfect words.

School-age children may ask very direct questions about the body or what happens after death. Answer simply and honestly, and share your family’s beliefs if you have them.

The AAP says teens view death in a more adult way, but many resist sharing their feelings. Some may pull away or take more risks. Patience, and showing healthy ways to cope yourself, can help.

Include teens in conversations and, where they want to, in decisions. Let them know they can talk to another trusted adult too.

Before a hospital visit, a wake or a funeral, describe what they will see and hear, including that some people may cry. Make every step optional. A trusted adult who isn’t as deeply grieving can stay with them.

The Dougy Center suggests giving children choices where possible, like helping pick flowers or clothing, or deciding whether to attend the service.

In a Swedish study of parents whose child died of cancer, none who talked with their child about death regretted it. Parents who sensed their child knew they were dying were more likely to regret not talking.

Children’s hospitals usually have palliative care teams, social workers, child life specialists and chaplains who can help you find words that fit your child and your beliefs.

The AAP suggests talking with a pediatrician if a child has ongoing trouble with sleep, eating, school or friendships. Get help right away if a child uses drugs or alcohol to cope, takes more risks, has ongoing anger, or talks about self-harm or suicide.

MedlinePlus advises contacting a health care provider if a child can’t return to normal activities 6 months or more after a parent dies, or shows risky behavior.

Hospital, hospice and palliative care social workers and chaplains help families have these conversations every day. Visits from a social worker or counselor may help a dying person resolve unsettled issues.

The “Serious illness & facing the end of life” guide explains palliative care and hospice.

Many people find comfort in talking with someone from their religious community, such as a minister, priest, rabbi or imam.

Elders and community leaders can also help explain traditions to younger family members.

At a Death Café, people gather to eat cake, drink tea and talk openly about death, with no set agenda. The aim is to help people make the most of their lives. It is a discussion group, not grief support or counseling.

Death Cafés have been offered in about 100 countries since 2011.

Let teachers and school counselors know what is happening, so they can watch for changes and offer support. It can also help to tell the parents of your child’s close friends.

Children’s grief centers, like the Dougy Center, offer peer support groups and free tip sheets for families.