Hospice for Children

What is hospice for children?

Hospice for children (also known as pediatric hospice or pediatric end-of-life care) is for adolescents and young children who have an end-stage illness and are choosing to focus on quality of life. The treatments for an illness they have is not working, and there appears to be a very low probability of finding a cure.

As a the parent and caregiver to your child:

• You have been with your child as they’ve gone through numerous tests and even clinical trials.
• You’ve lost count of how many doctors they’ve been to and the miles you’ve traveled to get the best care for them.

Your child may have spent months in palliative care when they were quite ill, yet there was still hope for recovery.

• You experienced the benefits of care for the whole person, in this case a child.
• Plus, your whole family was cared for and given support and encouragement when you needed it the most.
• Even though that time has passed, you are turning to hospice for that same kind of holistic care. It’s best for your child, and for you, letting you be there for them throughout the coming months.

Is pediatric hospice care only for children with cancer?

A lot of people associate end-of-life care and hospice with cancer. The truth is that hospice’s end-of-life care is available for people of all ages who have any end-stage disease. Among children, pediatric hospice is provided for children who are dying or seriously ill because of cancer as well as other diseases, such as:

• Complex heart conditions.
• Cystic fibrosis and other severe lung diseases.
• Illnesses of major organs, including the kidneys and liver.
• A number of serious conditions that harm metabolism or chromosomes.
• Severe cerebral palsy.

Pediatric hospice care extends throughout adolescence as children have developmental, social, and emotional needs that vary from those of adults. Some children have been ill for years. Children from birth through adolescence benefit when medical professionals who have expertise in their needs provide their care.

Is hospice care right for your child?

Deciding on hospice care for your child is not about giving up. Rather, it is about deciding that your child and family need all available care resources. You deserve their support through the remainder of the time you have together.

At this point in your child’s care, you’ve learned about medical studies. This is relevant because of what they’ve learned from parents about their children’s end-of-life experiences. Pediatricians and other professionals caring for children learned that seriously ill children need:

• To be treated and cared for by professionals who know what a child feels, likes to learn, and is scared of.
• Health care providers who are good at recognizing signs of pain, anxiety, and fear.
• Their parents and family members to be well informed and able to ask lots of questions about their condition and care.
• People who know and respect that your child still acts like a kid, even though they are quite ill.
  • They want to play, be creative, and have dreams fulfilled.
  • They have favorite things, even when they are very young.
  • They are interested in learning and being part of their neighborhood or community.

How can pediatric end-of-life care help your child?

Pediatric end-of-life care helps your child because of its personalized plan that:

• Assures your child’s developmental stage is recognized as being important for care. This means that providers:
  • Use words and a tone of voice that your child understands and finds comforting.
  • Will only ask a child to do something they are able to do.
  • Let your child make choices when possible.
  • Know the types of validation and reward that your child likes. These match your child’s development.
  • Want your child to be part of school and everyday life routines as long as possible and desired.

• Is focused on your child’s comfort and quality of life. This means that hospice professionals:
  • Know how to recognize pain, anxiety, and agitation in children of all ages.
  • Talk with you about your child’s history of pain so together you can decide how best to manage it.
  • Let you know about comfort care options to include in your child’s plan of care. Some options are:
    • Art, music, pet, and humor therapy.
    • Massage and Reiki.
    • Books and play kits to create happy moments.
  • Listen to your experience and concerns to assure that your child’s needs are addressed.
  • Are gentle yet honest when communicating with your child and you about end-of-life care and what it involves.
  • Talk with your child about fears or private thoughts, depending on the child’s age and development.

• Supports the decisions you and your child make for their final days. This includes:
  • When you decide that your child’s remaining days should be at home.
  • Letting your child have special meals and treats, as able.
  • Meeting requests of children and families who prefer end-of-life care in the hospital with familiar people.

How can pediatric end-of-life care help a child’s family?

Your child and their hospice team know that this is a very hard time for you. The team cares for you as they care for your child.

The doctors and nurses will talk together with you about pain management and comfort measures. They:

• Want to hear from you about what works and what does not.
• Know that you know your child the best.
• May be able to offer you different choices, some of which your child can make.
• Will share ideas with you about keeping your child as comfortable as possible.

The social worker and bereavement counselor offer their services to your whole family. They:

• Can meet with you, your child’s siblings, and other family members who desire their support.
• Support you with employment and financial matters, such as:
  • How to talk with your employer and file Family and Medical Leave Act paperwork.
  • Apply for Medicaid and other forms of financial assistance.
  • Talking with health insurance representatives as needed.
• Provide you with the support of a volunteer who will:
  • Spend time with your child while you run errands or take time out for self-care.
  • Read to your child or do other activities that your child requests. An example is having someone who can do simple juggling for moments of entertainment.

The hospice agency you choose strives to meet standards of practice for caring for children in palliative and hospice care that hopefully takes some pressure off of you and other family caregivers. This means that they:

• Have training and competencies in caring for children in hospice care.
• Practice family-centered care that surrounds your child’s needs and wishes. You actively contribute to your child’s plan of care.
• Conduct assessments that help providers to know about your child’s ability to be part of making decisions.

Do certain hospice providers specialize in pediatric end-of-life care?

There are hospice providers that specialize in pediatric hospice care. They typically offer physical and emotional care that aligns with a child’s development. An example is that a child who can read may want to read about their illness. Or, your child may want to talk with others with a similar diagnosis.

• Children need different preparation for medical tests than adults. The approach works best when geared to how a child has responded in the past. An example is that they may want a snuggly or a special person with them.
• Discussing your child’s impressions about pain. This depends on their development and willingness to share. The provider can:
  • Suggest ways to indicate level of pain using methods that work for your child. Examples are a hand squeeze, emoji pictures such as the FACES pain scale, or use of colors.
  • Engage your child in suggesting ways to lessen pain or improve comfort.

Providers that specialize in hospice for children should also understand what a parent who is caring for an ill child is going through and needs. They should:

• Be aware of your need for time alone with your child.
• Be sure that you are getting what you need for yourself, like a hot meal and plenty of fluids.
• Realize that you need to balance care for other children and home with caring for your child who is critically ill.

If you are unable to use a hospice provider that specializes in children, ask the hospice provider to consult with pediatric professionals in major medical centers about your child’s needs. This means that:

• They will learn about pain management and comfort measures that have helped other children.
• You will have the assurance that your child is getting up-to-date medical care while being able to stay at home.
• Professionals at a distance are available to consult with your child’s hospice team whenever needed.

As with other medical specialties, continued research is needed on how to communicate with children about a life-threatening disease and death.

• There is also a need for more training on how to discuss these delicate topics with parents and family members.
• Along with this is the reminder that children, from early years through adolescence, are still kids. They have hopes, interests, and people they love and admire.
• A child’s quality of life and comfort are enhanced when these factors and others are central to pediatric end-of-life care.

How do my child’s existing doctors work with the hospice doctors?

Most likely your child has been cared for by the pediatrician who either diagnosed their illness or referred your child to a specialist. This doctor, your child’s primary care physician (PCP), still works on behalf of your child with pediatric specialists and hospice pediatricians.

• The physician managing your child’s care may be determined by the setting.
  • If your child is in at-home hospice, the hospice physician will consult with your child’s PCP.
  • If your child is in hospital hospice, their care is likely to be managed by a pediatric hospitalist who communicates with the PCP.
• As discussed above, your child’s doctor and the hospice agency’s doctor can consult with pediatric hospice specialists at a distance from you.

What are the eligibility criteria for pediatric hospice?

There are a number of serious, life-threatening conditions your child may have that lead to the need for hospice. This is a partial list:

• Cancer that is at an advanced stage or becoming more serious, without a hopeful outlook.
• Complicated heart disease.
• Sudden illness or trauma that is severe.
• Prematurity with little chance of survival.
• Cystic fibrosis and lung failure.
• A child who has failing kidneys and is not a transplant candidate.
• A number of conditions that potentially limit life expectancy when they are severe, such as:
  • Cerebral palsy.
  • Brain malformation or harm from infections.
  • Metabolic, chromosomal, and nervous system disorders.

Eligibility for pediatric hospice includes:

• Your child has six or fewer months left to live. Treatments to date have not led to a cure.
• Your family has decided to focus on care and comfort over cure.

Does Medicare cover hospice for children?

Although some sources you’ll read state that Medicare covers hospice for children, this may not always be the case. It is advisable to check with a social worker who knows your child’s and family’s needs and to contact your Medicare office, linked below. There is at least one pediatric illness that may qualify for Medicare:

• Your child may be eligible to enroll in Medicare A and B if:
  • They have end-stage renal disease and are on dialysis or have had a kidney transplant.
  • And, you or your spouse must meet specific qualifications. To learn more, contact your Medicare office.

Does Medicaid cover hospice for children?

Each state governs its own Medicaid programs, ensuring these meet certain minimum federal requirements. Your state may cover hospice care for your child. To learn more:

• Contact your state’s Medicaid office.
• Talk with a social worker at the hospital where your child has had in-patient or out-patient care.

NOTE:

• Private insurances generally have provisions for paying at least a portion of hospice care. Talk with your insurance agent to learn more.
• Tricare covers hospice services provided here in the U.S. and in U.S. Territories.