Palliative and Hospice Care

Hospice services are an extension of palliative care but focus more specifically on end of life. Like palliative care, hospice involves team members (and sometimes volunteers) from a variety of specialties. However, these services have an emphasis on comfort treatments, compassion, and improving quality of life as it nears its end.

To receive hospice services, a physician must put in a request and show that your child meets eligibility requirements, including that they are near end of life. However, in many places, unlike adults, children can still qualify for hospice services while receiving curative treatments. This is called concurrent care.

Hospice teams work to make life as easy as possible for the entire family during this very difficult time. In addition to providing services, they can help to manage your child’s medications and medical equipment and supplies. Scheduling is flexible and several services are available 24 hours a day. Besides medical support, hospice offers services related to your entire family’s mental and emotional well-being. These could include music or massage therapy, spiritual support, bereavement services, and care from other mental health professionals.

Hospice services are typically provided at home, though can be provided in the hospital as well. While convenient, this can also be scary for both you and your child. The most important thing to remember is that your hospice team wants to make this the best time possible for everyone. You are the expert on your child and in the driver’s seat.

Hospice workers will likely already be familiar with your child’s medical needs prior to coming over. However, they will rely on you for direction on your preferences and routines. Since your family is much more than a diagnosis, it can be helpful to create a brief “fun fact” sheet of things you want them to know. This can be a good activity for the family to do together and will help them get to know you and your needs. Additionally, hospice services can be ever evolving with your family’s needs. If you do not like the staff member or services provided, you can always request a change.

Palliative care and hospice care are often confused and/or used interchangeably. Both are provided in addition to your child’s medical treatments and focus on supporting the entire family. However, each has a distinct role to play.

Below is an overview of the differences between palliative care and hospice care, as well as their many similarities.

Including your child in end of life decisions can be an important part of their (and your) grieving and coping process. Many children feel better knowing there is a plan and having some control over what happens in the final days of their life. You too may feel better knowing you are making decisions that honor your child’s wishes, both before and after they are gone.

However, parents and caregivers often struggle to know how exactly to include their child in end of life decisions and begin this important, if difficult, talk. Some avoid it because they don’t want to upset their child, or worry that they will not understand as they are too young. And of course, if their wishes differ from your own, it can make things even harder. But most find talking to their child about end of life decisions to be incredibly important and healing overall.

The amount your child can be involved in end of life decision-making will vary based on their age and understanding of what is happening. Having a say is often very important to teens and young adults. But even very young children think about their death. Many simply do not talk about it because they are trying to protect those they love. For this reason, your child might need permission or an invitation to open up.

Your medical providers and palliative care team can help you figure how to best involve your child. Several resources, such as My Wishes (children) or Voicing My Choices (teens and young adult), can also guide you. The types of decisions you and your child can make together include who your child wants to care for them, the kinds of treatments they want to receive and avoid, how they want to be treated by others, and what they want their loved ones to know. You can also use advice from the Talking to Your Child About Death section while having these discussions.

Memory making activities are also a great way to involve your child in end of life care and give them some sense of control. It’s common for kids to worry about how their family will cope without them, or that they will be forgotten once they are gone. Memory making activities help them feel they are leaving a legacy behind and will always be important. These activities can also be a good way for the entire family to create positive memories together during this time. Examples of memory making activities include creating art, picking out special items for siblings and recording stories and memories they want others to recall. More ideas can also be found within the sibling and caregiver bereavement sections.

Finally, some children find it helpful to have a say in their end of life ceremony or what happens to their belongings. They may have special wishes regarding the music, decorations, speakers, dress code or location of memorial services. They might also want to choose their own clothes or special items to be buried/cremated with. Others do not wish to think or talk about it at all. As with most things, it’s best to follow your child’s lead and keep communication open should they change their mind.

You’re the expert on your child and have been there for them throughout their life. The ways you’ve found to help them feel better will continue to be valuable as their health declines. However, some adaptions may need to be made. Now, more than ever, open communication and emotional support are incredibly important as well.

Below are a few ways you can support your child in their final days. You can also view our Children at End of Life resources (link) for books, toolkits and websites to help.

• While it can be tempting to let everything go, maintaining structure and routines can help your child cope during end of life, especially if they are younger. Just like during treatment, a family’s routines provide a sense of consistency and normalcy in a situation that is unpredictable and often out of anyone’s control.
• Provide your child with a sense of emotional safety by allowing them to openly recognize and express their emotions, ask questions, and share their fears and concerns. Be sure to assure them you will continue to be there throughout the entire dying process.
• When your child talks about how they are feeling, take the time to truly listen. Refrain from trying to fix or problem solve. Sometimes children just need someone to hear them without judgement and provide love and support.
• Children copy what they see from their parents and trusted adults. By recognizing, expressing, and managing your own emotions in front of your child, you can encourage them to share and teach healthy ways for them to cope with their own.
• Journaling, drawing and reading books about death and feelings (link resources) can all help children cope. You can also continue using stress reducing activities that have worked before. Additional ideas can be found in the Children section (link). You can also speak with child life specialists, social workers and other members of your child’s medical team for more.
• Find ways to give your child a sense of control and independence, especially if they are a teen or young adult. The physical changes that occur before death often make them very dependent. This can lead to feelings of helplessness, frustration, anger, depression and more. (link signs anticipatory grief) The changes in their abilities can also serve as a constant reminder of all that will be lost. Allow them to voice their frustrations and feelings without judgement.
• Be sure to provide time for your child to just be a kid and have fun. Play favorite games together and do other activities, as possible, that they enjoy. Many families also like to find ways to make their final days memorable and do something special they’ve never done before.
• If you have other children, make time for them to spend together. Some parents try to keep children apart, fearing it’ll be too hard or overwhelming for one or both. However, this can send the wrong message, and they may think one of them did something wrong. Being together will allow them to make the most of the time they have left. It can also provide an opportunity for them to say goodbye and begin to find closure. Visit the Grieving Siblings section for more ideas on how your well children can be involved.
• Some children need “permission” to die and let go. Many fear their death will cause too much pain and cling to life even while they suffer. Sometimes, though, parents are not the best person to do this and find it too hard. In this case, another trusted adult or family member can help. Use your best judgement on what your child needs and is appropriate.

It is expected for a child to struggle with both the physical and emotional parts of dying. They may also seem to be doing well, only to suddenly get worse. (More on typical reactions of dying children can be found here [link anticipatory grief]) And there is plenty that you and your family can do to help. But some children also need support from a trained professional.

Some signs your child may benefit from additional support as they are coping with their terminal illness and dying include:

• Significant changes in mood or behavior
• Withdrawing or isolating
• Becoming easily overwhelmed
• Expressing they are having a difficult time or desire additional support
• Threatening or engaging in self-harm
• You are having difficulty supporting your child due to your own emotions

If your child is experiencing any of these symptoms, or if distressing emotions go on for weeks and/or interfere with everyday life, it may be time to reach out for help. Talk to your child’s medical team, another trusted medical provider and/or your insurance company for referrals to a psychologist, psychiatrist, or other mental health provider. Support groups and religious figures can also offer supplemental support during this difficult time.

Below are a few suggested books, website and toolkits to help your child as they near end of life. You can also find more resources to help children cope at any stage in their treatment process on our Resources page.

Books

• Gentle Willow: Story for Children about Dying by Joyce C. Mills
• On the Wings of a Butterfly: A Story about Life and Death by Marilyn J. Maple
• The Purple Balloon by Chris Raschka
• Beyond the Rainbow: A Workbook for Children in the Advanced Stages of a Very Serious Illness
• The Gift of Gerbert’s Feathers by Meaghann Weaver, MD MPH and Lori Wiener, PhD DCSW
• When Something Terrible Happens: Children Can Learn to Cope with Grief by Marge Heegard
• The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia
• The Invisible String by Patrice Karst and Geoff Stevenson
• Invisible String Workbook by Patrice Karst & Dana Wyss

Websites

• Kids Wish Network – Kids Klub

Toolkits

• My Wishes (children) or Voicing My Choices (Teens and Young Adults)
• For Caregivers of a Child with Serious Illness – Conversation Starter Guide