As the parent of an ill child, you are in the best position to orient your child’s health care team to his or her preferences, needs and goals. When it comes to providing palliative care for a child, the health care team will need details about your child and your family in order to provide the best possible support for all of you during this difficult time.
By sharing information surrounding end-of-life care, it will help build a collective understanding and establish great communication.
What the palliative care team needs to know
Here is a list of important information that you might want to share with your child’s palliative care team so that they understand you, your child, and your family.
Let your team know about:
- Your child’s likes/dislikes; what makes him/her happy
- What your child understands about his/her medical condition
- The important things for the team to know in talking to you, your child and other family members (e.g. how you and your family best communicate)
- Some of your hopes and goals regarding your child’s care over the:
- Short term (today and for the next few days)
- Medium term (next few weeks)
- Long term
- Symptoms that bother your child (e.g.: pain, headache, nausea, vomiting, diarrhea, constipation, poor appetite, difficulty feeding, sleep problems, itching, fatigue, difficulty breathing, etc.)
- Your biggest concern or fear now and for the immediate future
Family involvement in end-of-life care for a child
When you have a terminally ill child, it’s tempting to focus all of your attention and efforts on the palliative care for your child, and shield any other children in the family from the knowledge that their sibling is dying. Most children have the ability to sense that something is wrong, even if they don’t necessarily know the cause behind these feelings.
The importance of family involvement in end-of-life care for a child cannot be understated as it also provides you with support.
Talk to your other children to learn their understanding about their brother or sister’s condition, and give them a chance to ask questions and express their feelings.
Here are other things you might want to discuss as a family:
- Your concerns about any of your children’s behaviours (e.g. crying, acting out, poor sleep) or interactions (e.g. not wanting to go to school)
- Age-appropriate ways in which you can help your children be involved in taking care of their sick brother or sister
- Understanding of your faith, religion, or culture
- What supports are in place: home housekeeping, home nursing, pharmacy access, respite
- Your own concerns and hopes
Post palliative care decisions
These are important issues about end-of-life care that you should talk about early before a crisis occurs:
- Preferences/options about medical care and treatment at end of life
- Level of resuscitation status in the event of a sudden deterioration (cardiopulmonary resuscitation, ventilation, intubation); as well as treatments that should be administered to your child (analgesia, antibiotics, anticonvulsants, transfusions)
- Advance care planning. Do you prefer care to be administered in your home or in the hospital (or hospice, if available) as your child approaches end of life?
- What end of life may look like for your child?
It’s never easy to deal with the fact that a child is dying, especially when that child is your own. However, asking the right questions, sharing information about end-of life-care with the health care team and your family, and making early preparations may help prepare you and your family to deal with the emotions that come with this difficult time.