End-of-life care

Caring for your child to end of life can be an intensely emotional and physically draining experience that will affect your entire family.

Talk with your spouse, family or friends about your feelings and fears. It is normal to feel angry, guilty and frustrated. But it’s OK to laugh, too. It may be helpful to talk to a grief counsellor or attend a support group. Some families may find it helpful to join support groups and talk to others who are in similar situations. Other families may join online support groups or may follow blogs. Relatives, close friends, social workers and spiritual care workers may also be able to help.

If you are a parent, ask for help. Take advantage of family and friends who want to help. They can help with child care, taking other children to activities, preparing meals and household chores. This practical support can take stress off a caregiver and help the family make the most of their remaining time with the child.

You need to help yourself first before you can help your child. Try your best to stay physically and mentally healthy. Think back to how you have coped in the past. Deep breathing and relaxation exercises can be calming. Being active can help both physically and emotionally.

Ask for help when you need it. Others often want to help but don’t know what to do for you. Tell them what might be helpful. Ask a social worker to help you check out compassionate care leave if you are employed and any other community services that are available.

Talk openly with your spouse and your children. You may want to protect your child and their siblings by avoiding the subject of death or dying. But your children may need to talk about this with you. The healthcare team can give you information that your child will understand and that is appropriate for their age. By talking openly you can create an atmosphere where children are comfortable talking about things if they choose to.

Just as parents want to protect children, a child may want to protect their parents and family. Your child may realize that treatment isn’t working, but they may not talk to you about it because they don’t want to upset you. The same may be true for siblings. Encourage your child to share any thoughts with you and ask any questions they have. This can make it easier for them to talk about any fears or worries that they may have and help them to know that it is OK to be afraid. However, even when encouraged, your child may not choose to share their feelings. And there are some questions that may not have answers.

Knowing what to expect near the final stages of your child’s life can help families feel prepared and cope. You may worry about what may happen to your child and what to expect when they are close to death. Ask your child’s palliative care team to explain symptoms that occur close to death. The palliative care team is there to help you.

The idea of making end-of-life decisions is almost unthinkable when it concerns your child. The healthcare team is there to discuss any questions and concerns you may have. Making decisions and plans prior to your child’s death can help you avoid making rushed decisions during a crisis, and will help your child and family face the end of life with dignity. It can also give comfort to both you and your child knowing that you are carrying out your child’s wishes.

Your child may have personal wishes about how they would like end-of-life issues handled or how they want their medical care managed. Depending on the age of your child, you as parents may ultimately make the decision but your child can still be involved.

Ask your healthcare team for resources such as “My Wishes” and “Voicing My Choices.” These are easy to fill out forms for children and teens that help your child to write about how they want to be comforted, supported, treated and remembered. They include information about:

• who your child would like to make decisions for them about their care if they can’t
• the type of medical treatment or life-support treatment your child wants or doesn’t want
• how comfortable your child wants to be
• how your child wants people to treat them
• what your child wants loved ones to know

Older teens who are of legal age may appoint a power of attorney (“living will”) for personal care, a legal document which includes advance directives about medical care.

It is important to consider the benefits and harms of any medical care or intervention. This includes but is not limited to cardiopulmonary resuscitation (CPR). The focus of care will be on doing those things that have more benefit than harm, and avoiding (or stopping) those things where harms outweigh the benefits.

It is important to talk to the healthcare team so everyone understands your decisions. All of these decisions are reversible. They can be changed if your child’s situation or wishes change. You can remove an order at any time by telling your doctor or nurse. Your healthcare team will probably check in with you from time to time to make sure that you are comfortable with your decision. When you are actually faced with your child’s death, you may change your mind. If you are at home and you need to call 911, you can choose not to tell the dispatcher about any advanced directives.

Planning what to do when your child dies is not the same as wanting them to die or giving up hope. Planning the funeral ahead of time feels right for some (but not all) families and can help make sure that your child’s wishes are carried out. Your child may want to know that they will be remembered in a special way after their death or have a say in how their life is celebrated.

Your healthcare team may talk to you about autopsy and organ and tissue donation. While not all families will pursue these options, it is important to discuss your feelings with your team.