End of Life Issues
- Palliative Care
- Hospice Care
- Do Not Resuscitate order (DNR)
- How to talk to your child about death
- How to meet your child’s needs
- How to find support for yourself, your spouse, and the child’s siblings
Palliative care
Hospice care
Do Not Resuscitate order (DNR)
How to talk with your child about death
- 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
- Reassurance that pain and suffering goes away after death and never comes back
- Understanding that they have “permission” to die. Children may feel guilty about leaving their parents and loved ones and worry about them.
Meeting the needs of the child
- Offer opportunities to engage in developmentally appropriate activities and play.
- Encourage attending 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 them up when they have to stay out of school for medical reasons.
- Encourage the child to keep in touch with friends and loved ones.
- 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 a 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, may feel out of control and overwhelmed.
- Advocate for the 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 the child's ongoing needs, especially the need for pain management.
- Talk about the changes the child may experience as their condition progresses but avoid scaring him/her. Remind him that the doctors will help make him feel as good as possible. Knowing what to expect can ease fear. Allow the child as much privacy and independence as they want for as long as possible.
- Encourage the 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 NV providers [18])).
- Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done by letter, phone or in person.
How to find support for yourself
- Take advantage of offers from family or friends to help with tasks you can delegate. Letting go of some simple responsibilities can ease your physical and emotional exhaustion.
- Make sure advance directives and other such documents are in place before the need arises.
- 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.
- 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.
- Request a consultation with the physician or a qualified staff member to explain what will happen when the child is close to death, such as physical and respiratory changes. Knowing what to expect helps some families feel more prepared.
- 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.
Taking care of yourself and your family
Resources
Information & Support
For Parents and Patients
Hospice Vs. Palliative Care (National Caregivers Library)
Explanation between the differences in hospice and palliative care including payment and treatment.
What Is Pediatric Palliative Care? (Get Palliative Care)
Definition of palliative care for children with stories and more.
Brochures for Families (NHPCO)
Brochures from the National Hospice and Palliative Care Organization.
Services for Patients & Families in Nevada (NV)
Service Categories | # of providers* in: | NV | NW | Other states (5) (show) | | ID | MT | NM | RI | UT |
---|---|---|---|---|---|---|---|---|---|---|
Bereavement Counseling | 13 | 2 | 5 | 2 | 40 | 5 | 11 | |||
Hospice & Palliative Care | 22 | 3 | 23 | 6 | 68 | 4 | 48 | |||
Wish Foundations | 18 | 16 | 20 | 19 | 17 | 19 | 23 |
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.