Pediatric palliative care is a specialized, growing area of medicine that focuses on providing comfort and improving the quality of life of children with serious or life-threatening illnesses. It addresses the emotional and physical symptoms of patients with severe conditions – from the time of diagnosis of the illness and throughout the course of treatment. Pediatric palliative care specialists also provide resources to families to help them cope with the stresses of their child’s condition and treatment.
From Nemours' KidsHealth
- Taking Care of You: Support for Caregivers
- Managing Home Health Care
- Relaxation Techniques for Children With Serious Illness
- Caring for a Seriously Ill Child
- Helping Your Child Deal With Death
- How Can Spirituality Affect Your Family's Health?
- Complementary and Alternative Medicine
- Palliative Care
- End-of-Life Care for Children With Terminal Illness
Managing Home Health Care
Intensive Health Care at Home
Kids can need intensive health care at home after they have been in the hospital for many different reasons. Medical equipment and devices can:
- function as a monitor
- provide nutrition
- provide oxygen
- help with breathing
- be needed for giving certain medicines
In each case, it's vital that parents, siblings, and other family members learn about the medical devices and equipment that the kids they love depend on.
During the transition from the hospital to home health care, families will have a support network to lean on, including a team of medical professionals — such as doctors, nurses, therapists, home health aides, and equipment suppliers.
At many hospitals, a staff social worker can help coordinate this team. The social worker also might be able to help arrange home nursing and respiratory services, medical follow-up, and emotional support.
The process of getting comfortable with your child's home health care begins at the hospital. Learn from the medical staff by closely observing how they take care of your child and how they operate the necessary equipment.
Be sure to ask questions about anything you don't understand. Ask if you can start practicing in the hospital so you are comfortable by the time you go home. Consider talking with families whose children require similar medical equipment or levels of care.
Family caregivers should be prepared for and well-informed about the care a child requires. Caregivers will need to know how each machine works, how to troubleshoot, and how to perform preventive maintenance and any backup procedures.
Here are some factors to consider as you prepare for home health care:
- You may need to make changes to your home to make it accessible for a walker or wheelchair.
- Your child's room may need certain equipment, sufficient electrical outlets, and a backup power supply from a battery or generator. (Some insurance companies may provide reimbursement.)
- It can be helpful if a bathroom or source of water is near the child's room.
- Keep a list of emergency numbers by the phone. Consider keeping a phone is in the child’s bedroom so that someone can call for help without leaving the bedside.
- Inform your local ambulance company of your child's medical condition before any situation comes up where you need one.
- Let your utility companies know that you have a child requiring medical equipment at home so that you are a priority in case of an outage.
- Make a plan for all types of emergencies, even natural disasters, that would include getting your child and any life-sustaining equipment out of harm's way.
Training Your Family
Family members should learn how to use and maintain all medical equipment. They also should:
- understand the child's medical condition
- know how to detect problems
- know what to do in emergencies
- learn CPR
- know when to call the health care provider
The specific skills needed will depend on your child's condition. The nurses and doctors can help you understand what you may need to know, and might even have training dolls to help you practice different procedures.
Home Health Care Assistance
The hospital social worker can help families arrange for nurses or aides to come into the home to assist with care, if necessary. They also can help determine any special qualifications home-care workers might need to have.
In general, home caregivers should understand how to:
- spot the slightest change in the child's behavior or appearance and communicate those changes to other caregivers
- administer medicines
- monitor medication schedules
- assist with exercise and other therapies
- understand the child's medical condition
- recognize problems, and know how to handle emergencies and when to call for help
You may want to prepare notes on your child's status and require each nursing shift to do the same. That way, early signs of trouble can be recognized and medical help summoned quickly. Consider keeping a patient journal near your child's bed so that nurses and family members can communicate about various issues.
Types of Medical Equipment
Various medical equipment can be required for different medical conditions, but there is some commonly used equipment for when kids need assistance to breathe, eat, and perform vital bodily functions, like urinating and stooling.
- Oxygen. Some kids breathe fine on their own, but need some extra oxygen, either all the time or intermittently. These children may get oxygen from a face mask or prongs in the nose. Oxygen should be kept away from smoking, flames, heaters, rubbing alcohol, petroleum jelly, and spray cans.
- Tracheostomy. A tracheostomy, often referred to as just a "trach" (say: "trake"), is a procedure in which a tube is inserted directly into the airway through an opening made in the neck. Breathing equipment may be attached to the tube. A tracheostomy is often done when a child can’t breathe because the airway is blocked or a child needs a breathing machine (ventilator) for a long period of time. The term "trach" can refer to the procedure, the opening, or the tube itself. All caregivers will have to learn to care for, change, and clean the tracheostomy tube.
- Ventilator. The ventilator, or breathing machine, attaches to the tracheostomy tube and provides continuous breathing support for the child. The doctor will decide the settings for the ventilator. Settings include breathing rate, size of breath, and amount of oxygen. All caregivers need to know the settings. The home care team will adjust the settings when ordered by the doctor.
- Manual resuscitation bag. This breathing device is used as a backup for a ventilator or in an emergency. It allows a caregiver to provide breaths for the patient by squeezing a bag. It should be on hand in case the ventilator fails, as well as for times during routine care that the ventilator is disconnected (such as suctioning).
- Suction machine. If a child can't cough to clear the airway, a suction machine may be needed. Suctioning is done via a tiny tube inserted into the airway (or trach opening). A variety of factors, such as the child's condition and the humidity level in the home, will determine how often suctioning needs to be done. Anyone providing care should learn how to use the suctioning machine. Both a bedside and a portable machine may be needed.
- Pulse oximeter. This small monitoring device measures heart rate and the amount of oxygen in the blood. It it is often worn on a finger or toe. A wire leading to a monitor shows the readings and sounds an alarm if they're abnormal. All caregivers need to know what the child's normal readings are and how to recognize a false alarm, which may happen if the device isn't properly attached or the child is moving the finger or toe.
Sometimes kids cannot swallow food or need nutrition assistance. To get this nutrition into the body, some methods use the child's gastrointestinal (GI) tract (these are called enteral feeds) and some go directly into the bloodstream (these are called parenteral feeds).
The health care team will provide specific information about how to handle different situations involving the equipment, such as displacement or clogging of tubes.
- Nasogastric tube (NG tube). An NG tube is inserted through the nose and down the throat into the stomach. It is used to provide formula when children need help getting nourishment for a short period of time, such as a few weeks to months. Some medications also can be given through an NG tube.
- Feeding tube. When longer-term support is needed, a tube can be placed through the skin of the abdomen, directly into the GI tract. Sometimes, a feeding pump is used to send formula into the tube, and controls the rate and amount given. Some medications also can be given through these tubes. Two commonly used tubes are:
- gastrostomy tube (G-tube) goes directly into the stomach
- jejunostomy tube goes directly into the small intestine
- Parenteral feeds. When the GI tract isn't working properly, nutrition can be given directly into the bloodstream. This can be done using a special longer term IV line, usually in the chest or arm. The line, and the area surrounding where it enters the body, must be kept very clean to prevent infection. Formula cannot be given through a line; a special mixture of nutrients must be given, based on the child's needs. Parenteral feeds require an intravenous (IV) pump to control the rate and amount of nutrition given.
- Diapers. Older kids sometimes have conditions that make it difficult to control when they urinate (pee) or stool (poop). These kids may need to wear diapers made especially for bigger children. It is important for parents or caregivers to change the diapers often so that a child is not wearing a soiled diaper for a long time. That can be uncomfortable and can lead to skin infections.
- Catheter. Children who need help urinating may have a tube that goes through their urethra into the bladder, called a catheter. This tube may stay in and continuously drain into a bag or may be inserted several times a day to empty the bladder. Sometimes, through surgery, a special pathway is made through the skin into the bladder for easier catheterization. Whenever a catheter is placed, it must be done according to the health care provider's instructions so that bacteria do not get into the bladder and cause an infection.
- Colostomy bag. A colostomy is an operation in which the one end of the large intestine is brought out through the skin of the abdomen, bypassing the anus. With a colostomy, stools are eliminated directly into a bag worn over the opening on the abdomen. This bag must be changed often.
Support for Parents
It's important to be able to find help and support, whether it's from the medical professionals involved in your child's care, or friends, family, or peers in similar situations.
The medical care responsibilities of home health care can feel overwhelming. And the demands of home care can easily make parents feel isolated.
Whether you need emotional support or help managing the household duties, don't hesitate to ask your health care provider or hospital about resources in your community. And try to get some time to yourself — even if it's just an hour for coffee with a friend, it can give you a needed break.
Reviewed by: Mary L. Gavin, MD
Date reviewed: September 26, 2016