End of Life Considerations
- Let them know you need and want honest, direct, and compassionate communication.
- Talk about your child’s and family’s feelings, fears, concerns, and preferences.
- Ask them for help with the choices, services, and resources available to make the end of life experience appropriate for the child and the family. This may include meeting your child’s wants and needs, end of life care and instructions for resuscitation, how to talk to your child and family about death, and family support.
Palliative care
- It often starts in the hospital and focuses on relief from the symptoms, pain, and anxiety of serious illness, whatever the diagnosis may be.
- It is provided along with treatment and helps the child to be as comfortable as possible.
- It also addresses the psychological, social, and spiritual needs of the child and family. The child’s primary care, specialty, or attending doctor can help with starting palliative care.
Hospice care
- It, too, focuses on relieving symptoms and providing social and psychological support for patients and families.
- A decision to use hospice services is also a decision not to pursue aggressive, life-prolonging treatment. Rather, the goals are comfort, peace, and dignity for the terminally ill child, getting the most out of the time they have left.
- Hospice services are usually billed to insurance as all-inclusive. Insurance coverage for hospice can be different with each insurance company, so checking with your plan is necessary before making a decision.
Do Not Resuscitate order (DNR)
- A DNR order tells medical professionals not to start CPR and may be very specific about what to do and what not to do.
- A DNR order can be authorized for a child with the consent of the child's parent(s) or guardian(s) and is generally carried out by a doctor or authorized nurse practitioner/physician assistant.
- If the child is old enough and able to understand and decide about CPR, the child's consent is also required.
- Some parents/children decide they want full resuscitation in any situation, in which case no DNR order is needed.
Talking with your child about death
- Watch for signs that your child may be ready to talk. They may bring up the subject of death; if they do, let them talk and be there to listen. It is also important to recognize the signs that they are finished talking for the moment. These signs may include fidgeting, looking away, and changing the subject.
- Use direct and simple language that your child can understand. For example, the terms “death” and “dying” are less confusing and misleading than “passing away” or “going to sleep.” Ask open-ended questions. “How did you feel about that?” instead of a yes or no question like “Were you sad?” gives the child the chance to answer in their own way.
- Allow younger children to share their feelings through art or play. They may find it easier to talk about their doll being sick or drawing a picture of a child who is very ill. An older child could also express themself through art.
- Knowing that they will not be alone. It is very important for children to know that their loved ones will stay with them and support and love them.
- Understanding the family’s religious or spiritual beliefs related to what happens after death.
- Knowing that family, friends, teachers, and other special people will always remember them, they will not be forgotten.
- Reassurance that pain and suffering go away after death and never come back.
- Understanding that they have “permission” to die. Children may feel guilty about leaving their parents and loved ones and worry about them.
Anticipatory Grief
- Sadness
- Tearfulness
- Anger
- Irritability
- Loneliness
- Guilt
- Anxiety
- A desire to talk or to withdraw
- Mental rehearsal of the death and following events
- Avoidance of all death related topics
- Mental rehearsal of the death and following events
- Avoidance of all death related topics
- Sleep disturbances
- Memory changes
- Headaches
- Unexplained physical pain
Meeting the needs of the child
- Offer opportunities to engage in developmentally appropriate activities and play.
- Encourage going to school as long as possible, even if only part-time. Ask the teacher if they can have the class write letters or make videos to cheer your child up when he has to stay out of school for medical reasons.
- Encourage your child to keep in touch with friends and loved ones help them do that if needed
- Help them continue to set goals and do things they enjoy. Short-term goals, such as reading a book or taking a trip somewhere special, can help your child gain a sense of achievement and meaning in their life.
- Continue treating them like a regular kid. Children need limits on behavior and, without normal parenting and limits, they may feel out of control and overwhelmed.
- Advocate for your child or teach them self-advocacy to ensure that pain and other symptoms are addressed promptly. Make sure caregivers and medical staff are aware of your child's ongoing needs, especially the need for pain management.
- Talk about the changes your child may experience as their condition progresses but avoid scaring them. Remind him that the doctors will help to make them feel as good as possible. Knowing what to expect can help them to not be so afraid.
- Allow your child as much privacy and independence as they want for as long as possible.
- Encourage your child to think about end-of-life wishes. These may include writing letters to friends, or going on a special adventure. Learn about organizations that help children fulfill their wishes (Wish Foundations (see NW providers [13])).
- Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done by letter, phone, video or in person.
Logistic Considerations
- Consider making funeral arrangements ahead of time. Making these decisions and arrangements ahead of time lets parents spend more relaxed, quality time with their child and avoid having to do them in a time of crisis.
- Make sure advance directives and other such documents are in place before the need arises.
- Request a meeting with the doctor or a qualified staff member to explain what will happen when the child is close to death, such as physical and respiratory changes. Being aware of what to expect can sometimes help families to feel less anxiety about the unknown.
Considering the cultural meaning of death
- A meaning sometimes attached to the illness
- The language used to address sickness and death
- The lived experiences of the child and family’s pain and suffering
- The symbolic value of a child’s life (and death)
- Appropriate expressions of pain and grief
- The family’s decision making and choices
- Care of the body after death
- It prioritizes the child’s values, hopes, and preferences
- It addresses the child’s unique emotional, spiritual, social, physical and cultural needs
- It can ease the stress of decision making and pain management
- It may help to shape the child and family’s experience of wellness, illness, dying and death
Taking care of yourself and your family
- Take advantage of offers from family or friends to help with things you need done. Letting go of some simple responsibilities can ease your physical and emotional exhaustion. Family or friends might not know what they can do to help, but wish they could, and having things they can do for you is helpful to you and them.
- Talk with family members and friends about your feelings and fears. It is very normal to experience anger, guilt, frustration, and extreme sadness.
- Seek support from a parent support group for children with terminal illness or a grief counselor.
- Spend as much time as possible with the child, tell them how much they are loved. Many families find it very helpful and special to look at pictures and videos of good times and share memories from the past
Resources
Information & Support
For Parents and Patients
End of Life Issue Resources (National Caregivers Library)
Resources for end of life including general information, funeral planning, grief and loss, and hospice care.
End of Life Issue Resources (National Caregivers Library)
Resources for end of life including general information, funeral planning, grief and loss, and hospice care.
What Is Pediatric Palliative Care? (Get Palliative Care)
Definition of palliative care for children with stories and more.
Understanding Grief Within a Cultural Context (Cancer.net)
Understanding Grief Within a Cultural Context
Hospice in Indian Country ( Literature Review) ( 491 KB)
Examines access, use, and cultural aspects of hospice care for AI/AN people (491 KB, 37 pp)
What is Anticipatory Grief? (Courageous Parents Network)
“Anticipatory grief” is the name for what people experience when they know that they will likely face a profound loss.
Brochures and Resources for Families (NHPCO)
Brochures and resources in English and Spanish from the National Hospice and Palliative Care Organization.
Services for Patients & Families Nationwide (NW)
Service Categories | # of providers* in: | NW | Partner states (5) (show) | | NM | NV | OH | RI | UT | |
---|---|---|---|---|---|---|---|---|---|---|
Bereavement Counseling | 2 | 4 | 5 | 2 | 6 | 13 | ||||
Hospice & Palliative Care | 3 | 5 | 24 | 4 | 4 | 45 | ||||
Wish Foundations | 13 | 13 | 15 | 13 | 16 | 18 |
For services not listed above, browse our Services categories or search our database.
* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.
Authors
Compiler: | Information compiled by Medical Home Portal authors and staff |
Content Last Updated: | 3/2023 |
2020: update: Tina PerselsA |
2017: first version: Tina PerselsA; Gina Pola-MoneyR |