End of Life Issues

Some children with special health care needs will have life-limiting chronic health issues or a terminal diagnosis. Parents play a vital role in treatment decisions and managing symptoms to help their child have the most comfort and best quality of life possible and to prepare for a dignified death. Having a child with a life-threatening illness can be frightening and stressful for parents, siblings, and other family members. It is important to talk openly and honestly with your child’s primary care doctor and specialist(s) so they know you need and want honest, direct, and compassionate communication. Talk about your child’s and family’s feelings, fears, concerns, and preferences. Families facing these challenges need help with the choices available to make the end of life experience appropriate for the child and the family. This may include meeting your child’s wants and needs, end of life care and instructions for resuscitation, how to talk to your child and family about death, and family support.

Palliative care is usually provided by a team that includes a doctor, nurse, social worker or counselor, and other professionals. It often starts in the hospital and focuses on relief from the symptoms, pain, and anxiety of serious illness, whatever the diagnosis may be. It is provided along with treatment and helps the child to be as comfortable as possible. It also addresses the psychological, social, and spiritual needs of the child and family. The child’s primary care, specialty, or attending doctor can help with starting palliative care. Palliative services may continue at home or in whatever care setting the family and care team feel is best for the child. Services are generally billed to insurance like other medical services, and some programs offer discounts or free service to families without insurance.

Hospice care is generally provided in the home to patients who are expected to live six months or less. Like palliative care, hospice care is provided by a team that includes doctors, nurses, social workers, pharmacists, counselors, and others. It, too, focuses on relieving symptoms and providing social and psychological support for patients and families. A decision to use hospice services is also a decision not to pursue aggressive, life-prolonging treatment. Rather, the goals are comfort, peace, and dignity for the terminally ill child, getting the most out of the time they have left. Hospice services are usually billed to insurance as all-inclusive. Insurance coverage for hospice can be different with each insurance company, so checking with your plan is necessary before making a decision.

Resuscitation (also called cardiopulmonary resuscitation or CPR) refers to the medical procedures used to restart a patient's heart and breathing when those stop, for whatever reason. CPR may involve simple efforts, such as mouth-to-mouth resuscitation and external chest compression, or more complex efforts, such as electric shock, placing a tube to open the airway, injection of medication into the heart and, in extreme cases, open-chest heart massage. CPR may not work in restarting the heart and breathing and when it is successful, patients may sometimes be left in worse medical condition and in greater need of ongoing care.

It is difficult to talk about end-of-life but, as a child’s health and quality of life declines and, especially, if death seems near, a family may decide to request a "Do Not Resuscitate” order (DNR) to avoid prolonging the child’s life if the heart or breathing stop. A DNR order tells medical professionals not to start CPR and may be very specific about what to do and what not to do. A DNR order can be authorized for a child with the consent of the child's parent(s) or guardian(s) and is generally carried out by a doctor or authorized nurse practitioner/physician assistant. If the child is old enough and able to understand and decide about CPR, the child's consent is also required. Some parents/children decide they want full resuscitation in any situation, in which case no DNR order is needed.

Children with terminal illnesses and complex medical issues are going to school in growing numbers. Unfortunately, schools may refuse to honor DNR orders, even if they are written and signed by the doctor. In some places, state, local or district rules prohibit implementation of DNR orders. Some school districts simply have decided they do not want liability for knowing when to carry out an order. It is of great value to speak with the district nurse, school staff and administration, and emergency responders to understand what will happen if the child’s heart/breathing stop at school. If they agree to carry out the DNR order, discuss the steps to be taken and where in the school that the child could be moved for privacy and dignity. It is also very important to consider the feelings of school staff and students and how this information is communicated to them.

Talking about death is never easy, especially with a child. Social workers, psychologists, and palliative care specialists may offer good advice on ways to do this. The following may also be helpful:

• Watch for signs that your child may be ready to talk. He may bring up the subject of death; if he does, let him talk and be there to listen. It is also important to recognize the signs that he is finished talking for the moment. These may include fidgeting, looking away, and changing the subject.
• Use direct and simple language that your child can understand. For example, the terms “death” and “dying” are less confusing and misleading than “passing away” or “going to sleep.” Ask open-ended questions. “How did you feel about that?” instead of a yes or no question like “Were you sad?” gives the child the chance to answer in her own way.
• Allow younger children to share their feelings through art or play. They may find it easier to talk about their doll being sick or drawing a picture of a child who is very ill.

When discussing death, the following reassurances can be especially helpful for your child:

• Knowing that he will not be alone. It is very important for children to know that their loved ones will stay with them and support and love them.
• Understanding the family’s religious or spiritual beliefs related to what happens after death.
• Knowing that family, friends, teachers, and other special people will always remember her.
• Reassurance that pain and suffering go away after death and never comes back.
• Understanding that he has “permission” to die. Children may feel guilty about leaving their parents and loved ones and worry about them.

Although parents often feel powerless when caring for a child with terminal illness, they can take steps to help meet their child's psychosocial and physical needs. As the condition progresses, needs will change and the family should pay close attention to the child’s behavior to guide how they can help.

To help the child experience the fullness of childhood for as long as they can, families may want to consider these ideas and other things that may be special to the child and family:

• Offer opportunities to engage in developmentally appropriate activities and play.
• Encourage going to school as long as possible, even if only part-time. Ask the teacher if they can have the class write letters or make videos to cheer your child up when he has to stay out of school for medical reasons.
• Encourage your child to keep in touch with friends and loved ones.
• Help her continue to set goals and do things she enjoys. Short-term goals, such as reading a book or taking a trip somewhere special, can help your child gain a sense of achievement and meaning in their life.
• Continue treating him like a regular kid. Children need limits on behavior and, without normal parenting and limits, may feel out of control and overwhelmed.
• Advocate for your child or teach her self-advocacy to ensure that pain and other symptoms are addressed promptly. Make sure caregivers and medical staff are aware of your child's ongoing needs, especially the need for pain management.
• Talk about the changes your child may experience as their condition progresses but avoid scaring him. Remind him that the doctors will help make her feel as good as possible. Knowing what to expect can help her not be so afraid.
• Allow your child as much privacy and independence as she wants for as long as possible.
• Encourage your child to think about end-of-life wishes. These may include writing letters to friends, or going on a special adventure. Learn about organizations that help children fulfill their wishes (Wish Foundations (see UT providers [18])).
• Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done by letter, phone or in person.

Parents don’t expect or want to outlive their children. Nothing can erase the heartache and distress that parents experience caring for a child with a terminal illness. Every parent and family will cope differently. Here are some suggestions that may help:

• Take advantage of offers from family or friends to help with things you need done. Letting go of some simple responsibilities can ease your physical and emotional exhaustion.
• Make sure advance directives and other such documents are in place before the need arises.
• Talk with family members and friends about your feelings and fears. It is very normal to experience anger, guilt, frustration, and extreme sadness.
• Seek support from a parent support group for children with terminal illness or a grief counselor.
• Consider making funeral arrangements ahead of time. Making these decisions and arrangements ahead of time lets parents spend more relaxed, quality time with their child and avoid having to do them in a time of crisis.
• Request a meeting with the doctor or a qualified staff member to explain what will happen when the child is close to death, such as physical and respiratory changes. Knowing what to expect helps some families feel more prepared.
• Spend as much time as possible with the child, tell them how much they are loved. Many families find it very helpful and special to look at pictures and videos of good times and share memories from the past.

The death of a child impacts the whole family. It is important to make sure you and the rest of the family are eating, sleeping and having other important needs met in order to give the child who is ill the best end of life care possible.