What Parents Should Know About End-of-Life Care

When your child is seriously ill, everyone is affected differently. Although doctors, researchers, nurses and other hospital staff have worked unceasingly for an answer, unfortunately, there’s not always a cure to the illness. 

During this challenging time of your family’s lives, it’s crucial that you get all of the care, support and love you need. One of the best things for your child may be end-of-life care, also known as palliative care. When you choose palliative care, the primary shift of care goes from medical to physical and emotional comfort for the child and family.

Going through a situation like this one is never easy for anyone, but it can be more comforting when you and your child can relax in the final days. Here’s what parents should know about end-of-life care to make the transition more comforting for everyone involved.

It Provides Comfort in a Difficult Time

The primary goal of end-of-life care is to provide comfort for the whole family and anyone else who is involved in your child’s life. It helps to ease your child’s symptoms, stress and discomfort. Whether your child is very young or in their teenage years, end-of-life care is an available option. 

A team of experts works together to ease your child’s pain, provide emotional support, come up with goals for this time and helps you have open conversations with your child about what is happening. These experts want your child and your family to have a high quality of life experience. 

It’s Important to Talk to Your Child

It’s essential to discuss this topic with your child, as long as they can understand what is occurring. Talking about death with your child or teenager can be challenging and confusing, so if you need help, experts can be there with you to have the conversation. 

When deciding to have end-of-life care, there are a few things to consider as a parent: 

• You should consider how and when to talk to your child. It’s a personal decision for you to make. If your child brings it up, then it might be a good time to talk about it. 
• Depending on how rapidly your child’s disease is spreading, you may have more or less time to have the conversation. 
• Sometimes, parents may think that it’s best not to tell them the truth. However, this isn’t protecting them. Children with an advanced disease likely already know that their bodies can no longer fight. By talking, you can help your child share their concerns with you.
• The best thing is to be honest. A child deserves honesty just as much as you do when their doctor tells you about end-of-life care.
• If your child is old enough, allow them to be part of the decision-making process.
• Finally, talk to your child about how they want to allocate their belongings after death, whether through a trust or will. 

If you need help with this conversation, you can always ask a nurse, social worker, doctor or anyone else involved in your child’s situation to help you. They can even step in if you find it too difficult to speak with your child.

It Involves As Many or As Few Team Members As You Want

A whole team of experts is there to support you and your child. You can involve multiple professionals in your child’s end-of-life care, or you can choose only to have a few. end-of-life care meets you and your child’s every need. 

Therefore, the team of people involved in your child’s end-of-life care can include doctors, nurses, social workers, massage therapists, spiritual advisors, dietitians and therapists for physical needs and emotional needs. There may be others involved as well. Discuss your exact needs and wants with your primary care provider, and they can help you reach the right people for your child’s end-of-life team.

It Is Usually Covered By Insurance

end-of-life care can become expensive, but usually, you won’t have to pay money out-of-pocket for the expenses. Typically, your health insurance will cover end-of-life care for your child. Check with your health insurance provider for this information. If you don’t have health insurance, or if it can’t cover all of the costs, you can source the means to pay it in other ways. 

Your community, family and friends may be willing to donate money. Many charitable organizations contribute to end-of-life care, too. If need be, a social worker can help guide you to someone who may be able to cover the costs. Money should never have to be an issue during this time. Many people would love to help.

It’s Helpful to Get Support for Yourself

Usually, parents don’t outlive their children. As a parent, it’s okay to grieve. There will be feelings of sadness and distress as you care for your child experiencing the end of their life. You deserve support and care for yourself as well during this time. Seek help from a counselor or support group and be open with family members and friends. 

It might be helpful to understand symptoms that occur close to death so you can feel more prepared. Also, consider making funeral arrangements ahead of time so you can feel at ease and relaxed in the last few moments of your child’s life.

Get the Support You and Your Child Deserve

Take advantage of every moment you have with your child. If end-of-life care is what your family needs, feel free to reach out to your primary care provider for more information.