When the Cancer Cannot Be Cured
Home Care Hospice Care Day-to-Day Concerns
Although treatments work for many children who have cancer, they do not work
for all. If your child's disease cannot be cured or controlled, you may want to
think about where your child would be most comfortable - in the hospital, at
home, or in a homelike setting. Talk with your child's treatment team about the
different choices available to you and your family. It is important to talk
with your child about what he or she would like. If your child is too young to
speak or does not understand, make a choice based on what you think your child
might want.
Special machines and treatments that can help someone live longer and more
comfortably are often an accepted part of treating a severe illness. For this
reason, many children with terminal cancer and their families choose hospital
care. They want to know that everything in the hospital is available to them.
More and more cancer patients and their families, however, are choosing care
outside of the hospital. As a parent, it is important to know that, with the
help of nurses, doctors, and other health professionals, your child can receive
good care outside the hospital.
Home care is a good choice for many children who have cancer. Home health care
professionals can provide cancer drugs, pain medications, equipment such as
hospital beds or wheelchairs, proper nutrition, physical therapy, and many
complicated nursing and medical care procedures. They also provide emotional
support for you and your child and for brothers, sisters, and other family
members.
Some people choose home care because hospital care can seem cold. Another
advantage of home care is that family and friends, including your child's
friends, can support and help you. Home care involves bringing members of the
home health care team into your house or possibly into the home of a relative
or friend. Depending on the needs and concerns of your child and your family,
the home health team may include all or many of the following professionals:
nurses or nurse practitioners, social workers, dietitians, physical therapists,
pharmacists, oncologists, radiation therapists, clergy, and a psychologist or
psychiatrist. Home health aides also are available to help with bathing,
personal care, or preparing light meals, as needed. In many cases, specially
trained volunteers, called respite care workers, can care for your child when
you need a few hours away from home.
You, your family, and, when possible, your child, will work closely with health
care workers to make sure that your child is comfortable and receives the best
care possible. If 24-hour care is needed, members of the team will work
different shifts to give you and your child around-the-clock support.
Home care is given through various for-profit and not-for-profit private
agencies, public and private hospitals, and public health departments. Your
child's treatment team can give you information on home health care.
Hospice programs provide special care for cancer patients and their families,
either at home or away from home, in separate buildings, or within hospitals. A
team of medical professionals and volunteers works with the family and patient.
The main concerns of hospice caregivers are quality of life and control of
pain.
Hospice caregivers also help family members learn how to care for children who
have terminal cancer. They give emotional, social, and spiritual support during
your child's illness and after your child dies.
About 1,800 hospice programs across the country offer total hospice care. The
National Hospice and Palliative Care Organization encourages and tracks the
quality of hospice care. Children's Hospice International advocates for hospice
care for children. You can find more information about these organizations by
calling the NCI-supported Cancer Information Service (CIS) at 1-800-4-CANCER
(1-800-422-6237) or TTY at 1-800-332- 8615.
During the past several years, health care professionals have become more aware
of the needs of children who have late-stage cancer and of their families. For
example, attending school halfdays or even for an hour a day - if possible -
may make your child happier. Talking with your child about death and dying and
giving your child as many choices as possible shows your child that you are
being open and honest, and shows your support, love, and respect. Paying close
attention to changes in your child's behavior may give you important clues as
to what your child needs and whether he or she wants to talk about dying.
Including all of your children in everyday activities - such as reading, doing
homework, or watching a favorite television program or video together - can
help keep the family close.
Back to Top
< Previous Section | Next Section > |