It is often helpful if a child has an activity to do while visiting a loved one who is receiving hospice care.
When someone important in a child’s life is receiving hospice care, it can be challenging to know how best to support that child. Many parents wonder if their child should be allowed to visit a patient who is dying. Would visiting be too scary or tarnish the child’s happy memories with that person? Would not having a chance to say goodbye result in resentment or guilt? The following tips will help parents and caregivers know how to make the best choice.
Should children visit a patient at end of life?
Yes, if the child would like to visit the patient. It is important to give them the opportunity to do so, regardless of their age. Children often struggle with their experience because they believe they did not have a choice or their feelings were not considered. If your child wants to visit, here are some ways to help ensure the experience is a safe and comforting one.
Preparing your child for a visit:
- Make your child aware of any changes in the patient’s condition.
- “Grammy may be sleepier than usual, her breathing may sound different and she might have her mouth open. Grammy might not be able to talk to you, but if you talk to her, she can still hear you.”
- Prepare your child for changes in the patient’s environment.
- Is there new medical equipment (hospital bed, oxygen, commode, etc.) in the house?
- If the patient is at a hospice house, you can explain:
- A hospice house is “home away from home” for people who are very, very sick. A hospice house is usually much smaller than a hospital; it is very quiet and peaceful.
- There are lots of people to help make the patient feel comfortable (doctors, nurses, social workers, etc.).
- The patient’s room looks like a room in someone’s home so family members and loved ones can bring pictures or other items from home to decorate.
Care Dimensions’ child life specialists can email you a prep book with child-friendly pictures and information prior to your visit to the Care Dimensions Hospice House in Lincoln, MA, or the Kaplan Family Hospice House in Danvers, MA.
Timing the visit:
- Avoid a visit right before the child’s bedtime to allow for time to decompress and to process feelings.
- Visit when the patient is most comfortable or alert.
- If the patient is in noticeable pain or discomfort, limit the visit or reschedule it.
- If this may be the last time your child sees the patient, be sure they know this.
During the visit:
- Provide ideas for how to interact during the visit.
- “While you are visiting Grammy, you can draw a picture to put by her bedside, sing her a quiet song, read her a book, talk to her, or simply hold her hand. If you would like to visit, but do not want to stay in the room with her, you can play in a different room.”
- Ask your child if they have any questions and be prepared to answer them as honestly and directly as possible.
- If old enough to be unsupervised, ask your child if they might like a few minutes alone with the patient.
Leaving a visit:
- Saying goodbye can bring up difficult feelings. Validate this.
- Make sure your child can identify a supportive adult in their life who can be available to talk about feelings or answer questions. This may be a parent, caregiver, or professional.
- Name the positives of the visit
- “That was a special picture you made for her.” Or “It means a lot that you visited.”
- If the patient is very close to end of life, avoid making promises like “we will see her again next week.”
If your child does not visit:
- You can ask your child about why they prefer not to visit to ensure there is not an underlying reason that could be addressed.
- Validate your child’s wishes to not visit. It’s okay to not want to go. Avoid making comments that could cause guilt or shame about this choice.
- Let them know they can visit another time if they change their mind. If visiting another time is not possible, make sure the child is aware of that.
- Offer alternatives
- Draw a picture or write a note to be mailed or delivered by another visitor.
- Exchange a picture or video message on a cell phone.
Helping your child process feelings
- Remind your child that it is okay to have many different feelings about a loved one who is so sick. Children sometimes feel sad, scared, angry, happy, relieved, worried, and/or confused. Ask your child about what is most helpful for them when they experience these feelings.
Care Dimensions has a team of child life specialists who can help you decide how much information to share with your child and how to support them while a loved one is receiving hospice care. Contact ChildLife@CareDimensions.org or ask a member of your hospice team to have a child life specialist contact you directly.
Learn more about our Children’s Program and children’s grief resources.