Some children 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, stressful, challenging and traumatic. It is important to talk openly and honestly with your child’s primary care doctor and specialist(s):

• Let them know you need and want honest, direct, and compassionate communication.
• Talk about your child’s and family’s feelings, fears, concerns, and preferences.
• Ask them for help with the choices, services, and resources 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 less invasive efforts, such as mouth-to-mouth resuscitation and external chest compression, or more complex, invasive 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.

A DNR is a choice for the individual and family, because 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 can 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. They may bring up the subject of death; if they do, let them talk and be there to listen. It is also important to recognize the signs that they are finished talking for the moment. These signs 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 their 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. An older child could also express themself through art.

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

• Knowing that they 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 them, they will not be forgotten.
• Reassurance that pain and suffering go away after death and never come back.
• Understanding that they have “permission” to die. Children may feel guilty about leaving their parents and loved ones and worry about them.

“Anticipatory grief” is the name for what people experience when they know that they will likely face a profound loss. For parents of a child with a serious illness, it includes all the losses along the illness journey—not just the prospect of death. It means grappling with and grieving the loss before it completely unfolds.”

Emotions and behaviors that might come up for caregivers:

• Sadness
• Tearfulness
• Anger
• Irritability
• Loneliness
• Guilt
• Anxiety
• A desire to talk or to withdraw
• Mental rehearsal of the death and following events
• Avoidance of all death related topics
• Mental rehearsal of the death and following events
• Avoidance of all death related topics

Physical manifestations of grief to be mindful of:

• Sleep disturbances
• Memory changes
• Headaches
• Unexplained physical pain

Understanding that what you are feeling and experiencing is Anticipatory Grief can go a long way toward helping you stay functional and accept your feelings as normal. Anticipatory grief is not often discussed, so parents don’t always understand what it is that they’re experiencing. This can be confusing and scary, and make you doubt your ability to cope. If you have any of these physical manifestations of grief, contact your own Primary Care Physician to see if there is something they can do to help you.

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 them do that if needed
• 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 your 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, they may feel out of control and overwhelmed.
• Advocate for your 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 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 them. Remind him that the doctors will help to make them feel as good as possible. Knowing what to expect can help them to not be so afraid.
• Allow your child as much privacy and independence as they want 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 NW providers [14])).
• Give your child time to say good-bye to family, friends, teachers, and other special people. This can be done by letter, phone, video 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. It could be helpful to do some needed things in advance as much as possible:

• 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.
• Make sure advance directives and other such documents are in place before the need arises.
• 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. Being aware of what to expect can sometimes help families to feel less anxiety about the unknown.

What is Culture?

The Oxford Dictionary defines “culture” as: the customs, arts, social institutions, and achievements of a particular nation, people, or other social group. To go a step further, culture includes our language, religion, marriage, gender identity, the food we eat, the clothes we wear, how we interact socially, how we behave with our family, what we believe is right and wrong, and many, many other things that need to be carefully considered for someone who is at the end of life. Culture can be unique and “one size does not fit all.”

Many cultures have a unique set of beliefs that describe how the world should work and how people interact. In societies in which most people share the same religion, religious beliefs significantly shape the culture. Many cultures also have belief systems about the meaning and purpose of life and what happens after death.

This informs how people in those cultures approach death. For example, some people may find death more bearable if they believe in a life after death. In some cultures, people believe that the spirit of someone who has died directly influences the living family members. The family members are comforted by the belief that their loved one is watching over them. In general, beliefs about the meaning of death help people make sense of it and cope with its mystery.

End of life care is shaped by culture, this includes:

• A meaning sometimes attached to the illness
• The language used to address sickness and death
• The lived experiences of the child and family’s pain and suffering
• The symbolic value of a child’s life (and death)
• Appropriate expressions of pain and grief
• The family’s decision making and choices
• Care of the body after death

Why is culture important at the end of life?

Making your child’s and family cultural beliefs a priority at end of life is acceptable and encouraged because:

• It prioritizes the child’s values, hopes, and preferences
• It addresses the child’s unique emotional, spiritual, social, physical and cultural needs
• It can ease the stress of decision making and pain management
• It may help to shape the child and family’s experience of wellness, illness, dying and death

Everyone has spiritual questions in life. You don’t need to have a religion or be part of a church to ask deep, meaningful questions. Even in the multi-faith and multi-cultural society we live in today, these thoughts are natural, especially when questioning death. When a child dies, it may raise some of the most difficult questions. Whatever our upbringing or cultural beliefs, we may be confused, sad, bewildered, and scared. Some people might be angry, and question their beliefs, asking how this can be allowed to happen.

This experience is different for everyone. Some families find great support and comfort in their cultural beliefs. It is also very often that when something this traumatic happens, a lot of feelings are brought to the surface. Questions like “What is the meaning of life?”, “What does this mean?”, and “How can I make any sense of what is happening?” are normal questions that go through your mind when experiencing this kind of trauma. These are the kind of questions you could not possibly find answers that would make sense to you. At this time, it may be helpful to talk to a close friend, a nurse or chaplain at the hospital, your religious leader, or a trusted family member. Talking to someone might feel like a very hard thing to do, but talking about these things and hearing other’s perspectives can be valuable.

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.

• 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. Family or friends might not know what they can do to help, but wish they could, and having things they can do for you is helpful to you and them.
• 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.
• 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