End of Life Issues

Some children with special health care needs will have life-limiting chronic health issues or a terminal diagnosis. Parents play an important 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. Families facing these challenges need guidance on the options available to optimize the end of life experience for the child and the family. It is important to talk openly and honestly with your child’s primary care clinician 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.

• Palliative Care
• Hospice Care
• Do Not Resuscitate order (DNR)
• How to talk to your child about death
• How to meet your child’s needs
• How to find support for yourself, your spouse, and the child’s siblings

Palliative care is usually provided by a team that includes a physician, nurse, social worker or counselor, and other professionals. It often begins in the hospital and focuses on relief from the symptoms, pain, and anxiety of serious illness, whatever the diagnosis. It is provided in addition to 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 physician can help with initiating palliative care. Palliative services may continue at home or in whatever care setting the family and care team feel is best for the patient. Services are generally billed to insurance like other medical services, though 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 physicians, 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 varies, 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, insertion of a tube to open the airway, injection of medication into the heart and, in extreme cases, open-chest heart massage. CPR may not succeed in restarting the heart and breathing and when it is successful patients may 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 perform 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 executed by a physician or authorized nurse practitioner/physician assistant. If the child is old enough 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 attending school in increasing numbers. Unfortunately, schools may refuse to honor DNR orders, even if they are written and signed by the physician. In some locations, state, local or district rules prohibit implementation of DNR orders. Some school districts simply have determined they do not want liability for knowing when to implement an order. It is important 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 implement 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.

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:

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 attending 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 them up when they have to stay out of school for medical reasons.
• Encourage the child to keep in touch with friends and loved ones.
• Help them continue to set goals and do things they enjoy. Short-term goals, such as reading a book or taking a trip somewhere special, can help a child gain a sense of achievement and meaning in their life.
• Continue treating them like a regular kid. Children need limits on behavior and, without normal parenting and limits, may feel out of control and overwhelmed.
• Advocate for the child or teach them self-advocacy to ensure that pain and other symptoms are addressed promptly. Make sure caregivers and medical staff are aware of the child's ongoing needs, especially the need for pain management.
• Talk about the changes the child may experience as their condition progresses but avoid scaring him/her. Remind him that the doctors will help make him feel as good as possible. Knowing what to expect can ease fear. Allow the child as much privacy and independence as they want for as long as possible.
• Encourage the 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 NV 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 anguish 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 tasks you can delegate. 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 consultation with the physician 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.