Siblings at End of Life

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Whether or not they have been told directly, children often have a sense that their sibling’s health is seriously declining. As much as any adult, they will likely anticipate end of life in their own age-related way, have questions and concerns, and need support.

Your Team:

Psychologist

A mental health professional who uses therapy and other strategies to support coping and adjustment and treat concerns regarding social, emotional, or behavioral functioning.

Social Worker

A trained professional who works with people, groups and communities to help them better their lives.

Chaplain

A member of the clergy who is responsible for the religious needs of an organization and/or its constituents.

Spiritual Leader

An individual who leads and/or guides individuals or groups coping with life experience and challenges.

Grief Counselor

A mental health professional who specializes in bereavement and loss.

Palliative Care Clinician

A specialist whose aim is to improve the quality of life of their patients over the course of their illness regardless of stage, by relieving pain and other symptoms of that illness.

Primary Physician

A medical professional who practices general medicine.

Nurse

A person trained to care for the sick, especially in a hospital.

Guidance Counselor

A person who gives help and advice to students about educational and personal decisions.

Teacher

An educator.

A psychologist, social worker, chaplain and/or spiritual leader can provide a safe space for siblings to talk and share their emotions. A grief counselor can help process strong emotions. Palliative care clinicians and child-life specialists can offer age-appropriate ways of talking with siblings and facilitate special moments and memory-making. Your child’s primary physician can offer a deeper understanding of the family. A school nurse, guidance counselor, or teacher can provide support.

It may feel unthinkable to openly talk about the changes that are occurring in your dying child, and to talk about death. It can be especially hard to know how to bring siblings into this conversation, especially if the changes are very sudden or are occurring very rapidly. Know that speaking honestly and gently can offer comfort and help reassure your children that the family unit will survive this very difficult time and tremendous loss. In being open with them, you will create a foundation of support, space and trust to talk about difficult things, now and in the future.

As with most things, it is helpful to learn about what siblings already know, have heard, are thinking. This conversation can provide a jumping-off point to share new information, explore questions and worries, and clarify any misunderstanding. You may find yourself having to answer many difficult and painful questions, some of which you may not have answers for. Be honest and direct, using age-appropriate language. Words like death and dying help avoid confusion, as many other terms (e.g., passing on, departing) are vague and have multiple meanings. This is particularly true for young children, who tend to be concrete thinkers and take things quite literally.

In these and all conversations, keeping a developmental frame in mind will help you speak to, and respond to, sibling questions, worries, fears and other concerns.

Infants have no cognitive understanding of death, but they do grieve. They may experience death as separation, and often sense a caregiver’s emotional state, so it is important to maintain routines and avoid separation when possible.
Preschool children (ages 2-5) see death as temporary and reversible, as in cartoons. Magical thinking (around age 5) is characteristic, and so preschoolers may believe that a death is the result of something they did or didn’t do, or that they somehow have the power to cause the death (or reverse it).
Children ages 6-9 are concrete thinkers but still do not understand that death is permanent. They still may believe that it will never happen to them or anyone they know.
Children ages 9-11 remain concrete thinkers. They have some capacity to put themselves in other people’s shoes and may have a sense that others can die.
Around age 12, children begin to have abstract thinking and come to understand that death is final, irreversible, and will happen to everyone. Adolescence, however, has many phases and each phase may bring with it different responses.

“Our goal is to try to get them as okay with this as possible before it happens … to understand that when their sister does go, she’ll be free. We’re going to be the ones left here sad, but their sister won’t be in pain. It’s going to be hard on all of us. I worry about whether we’re going to be strong enough to be strong for them.“

– Jenn, parent of Mallory

Supporting Siblings’ Reactions and Feelings

Remember that children, like adults, experience anticipatory grief—what happens when a person knows that they will likely face a profound loss. They may be sad, tearful, angry, irritable, anxious or withdraw. They may have physical problems: difficulty sleeping, head or stomach aches, or other pain. They may choose to avoid the topic entirely, changing the subject or leaving the room. Always be open to conversations, while respecting that each of us grieves in our own way.

It is extremely helpful to make others in the siblings’ community—especially teachers, friends’ parents, and, if relevant, their faith community—aware of what is happening at home. This will prepare them to anticipate and understand changes in behavior such as sudden tears, anger, other acting out or asking direct questions about life and death. Let other adults know how you are responding so that they can be consistent and supportive.

Involving Siblings

Describing what is likely to happen at end of life will help siblings begin to have a more accurate picture of what will occur. If your child will be at home, tell the siblings about the plan: who will be in the home, who will come into the home. If your child will be out of the home, let the siblings know how and when they will be able to say goodbye.

Whether siblings should be present at the death is a big question for many parents. Speaking to a member of the care team, a pediatric psychologist or therapist, a close relative, or someone who knows the siblings, can help you decide what is best for your family. You might consider other options, like encouraging your other children to make or give something special to the dying sibling as they say goodbye. There is no right or wrong answer.