Pain Management

Palliative Care

Most children are successfully treated for cancer. However, some will die from the disease. In these cases, the child and the family will be helped and supported with palliative care.

The main focus of palliative care is to make sure the child is comfortable, enjoys life as much as possible, and is able to die peacefully. Pain that may occur when children are dying can be well-managed. For example, pain may come from a tumour moving into bones or other organs or pressing on nerves. Such pain can be treated with strong pain medicine such as morphine, radiotherapy to shrink the tumour, or surgery. In many cases, the child can receive pain treatment at home with help from doctors and nurses by telephone, home visits, and outpatient visits.

Whose job is "Pain Management"?

The answer is everyone's. Parents, children, and health professionals all have a job on the "pain management team". This team works best when all members share information and ideas with each other.

ROLE OF THE PARENTS

Parents have an important role in pain management: as experts, as coaches, and as advocates or spokespersons for their child. While this may seem overwhelming at first, the suggestions in this book will help.

Parents as experts: First, parents are experts about their own children. As a parent, you probably know more about your child's feelings and expressions than anyone else. This means you should be asked how he or she might react to an event, before it happens. You should also be involved in decisions about how your child's pain is managed. You should feel free to offer your opinions and ideas, even if not asked. This is a new thing for many parents. With time, you will become more comfortable talking with the doctors and nurses about your child.

Parents as coaches: Second, parents can be the best coaches or teachers of ways to deal with pain. Parents know their children best and have close emotional bonds with them. Therefore, they are able to help their child deal with new and diff icult situations. It is important to know that you can be with your child during most procedures. Children usually want a parent with them to talk in a soothing voice, hold their hand, or rub their forehead. You know best how to comfort your child. You may have already used some of the suggestions in this book; you may want to try others. The staff can also give you ideas to help your child with painful procedures.

Parents as advocates: Third, parents are advocates (someone who speaks on behalf of another) for their children. Parents have the right and responsibility to make sure their child's pain is well-managed. This means you may have to speak out for your child. As we've said, you should be able to discuss your ideas and your suggestions for changes in pain management with the hospital staff. In particular, if you see that something is not working, make sure someone knows. A good person to talk with first is the nurse, since he or she will be with your child the most.

ROLE OF THE CHILD

Children have two main roles in pain management: as co-directors and as experts.

The child as Co-director: Your child should be involved as much as possible in deciding how pain will be managed. The age of the child will affect how much he or she is able to do this. Teenagers can be very active in managing their pain, while infants will have little direct participation. Increasing a child's sense of control decreases pain and increases co-operation. But there are limits to this control. For instance, children as young as 3 years old can be asked which finger they want "pricked", but they cannot be allowed to decide whether or not the fingerprick will be done. Teenagers, on the other hand, can decide whether the side effects of a pain medicine are worth its pain-relieving effects.

The child as Expert: Only your child knows how much pain he or she is feeling. When a child says something is painful, he or she should be believed unless there is a very good reason not to. Children also know what they prefer. For instance, some like to watch as a needle is inserted, while others may want to look away.

ROLE OF THE HEALTH PROFESSIONAL

Health professionals have three main roles. First, they are Experts in the treatment of your child's disease and the control of symptoms such as pain. Second, they should be Teachers, educating you and your child about disease, pain, and treatment choices. Third, they should be Caregivers, providing support and assistance to parents and children.

For the newcomer to the hospital, there can be a confusing number of people in white coats. The following list describes who these people are, and what they do. If you wish to see any of these people, talk to your child's nurse or doctor. He or she sho uld be able to arrange it for you.

Nurse: the person who provides day-to-day care for your child. Nurses have the most contact with patients and make many decisions about their care. They give medicine, watch your child's condition, and give valuable emotional support. Nurses can also help you understand treatment choices for your child. They are readily available and can answer most of your questions. If they cannot answer a question, they will refer you to someone who can help.

Oncologist or Hematologist/Oncologist: a doctor who specializes in the treatment of cancer. He or she will direct the medical treatment of your child's cancer and discuss treatment choices with you and your child.

Anaesthetist (or anesthesiologist): a doctor who specializes in the control of pain during surgery and at other times.

Psychiatrist and/or psychologist: doctors who specialize in the mental, emotional, or behavioural adjustment of children and families. In many clinics a psychologist or psychiatrist is routinely asked to see families who have a child with cancer. Finding out that your child has cancer is very difficult, and these doctors are trained to help people during difficult times. Consulting with a psychologist or psychiatrist is NOT a sign of mental illness or of family problems. These doctors may also be able to teach you and your child more about pain control.

Social worker: a professional who specializes in the emotional and social adjustment of children and families. Often, a social worker is assigned to each family to help them during their illness.

Physiotherapist: a professional who specializes in exercises to keep muscles strong and flexible. Physiotherapists can often help with pain that comes from muscles and nerves.

Occupational Therapist: a professional who specializes in maintaining your child's abilities in activities of daily living, play, and school.

Nutritionist: a professional who helps your child get the best possible nutrition, in order to improve healing and maintain strength.

Child life specialist: a professional who encourages children in learning, play, self-expression, and family involvement while in hospital.

Chaplain: a member of the health team who helps children and families deal with the spiritual and emotional aspects of their lives. The chaplain may be of a specific denomination or may serve several denominations.

Clinical pharmacist: a hospital pharmacist who monitors the use of drugs to improve the effectiveness and safety of treatment.

Technical personnel: technologists who take blood samples and X-rays and test blood and other samples.