What Is Pediatric Hospice Care?
A Special Kind of Care
For terminally ill children the world is hospitals, people in masks, painful needles and feeling bad. And just as they need the medicines and treatment their doctors provide, they also need a special kind of care to ease their fears and make sure they are not in pain.
This kind of care is the job of the hospice care team. They help seriously sick children be as comfortable as possible—emotionally, spiritually, physically. Hospice care also helps parents, siblings and grandparents. The team can lend support with decision making, caring for the child and, if necessary, addressing anticipatory grief.
Hospice care addresses the physical, emotional and psychosocial symptoms associated with a child’s terminal medical condition. As with adult hospice care, it does not focus on curing or treating the disease, but on offering comfort and relief.
Working with the hospital or healthcare facility and the child’s primary physician, the hospice interdisciplinary team offers a wide scope of services that runs the gamut from specific symptom relief to help with financial concerns to explaining medical procedures and translating complicated medical forms. A multi-specialty hospice team usually consists of a physician, nurse practitioner, hospice aide, social worker and interfaith clergy.
Benefits of Pediatric Hospice Care
Studies have shown that children receive more aggressive treatments for a longer period of time than seriously ill adults do. To deal with the pain or side effects of these advanced treatments, some children with life-limiting complex genetic and neurological diseases receive hospice care while they are being treated as well as when treatment stops.
The following are some of the benefits:
- Relief of Symptoms
Pediatric hospice care targets children from birth to 21 and is used for a range of diagnoses including, cancer, heart conditions, lung diseases, neurological disorders and premature birth. Care can begin as soon as a diagnosis is made, be provided throughout treatment and follow-up, and continue until the final moments of life. Symptoms that are controlled with medication or holistic approaches may include:
- Difficulty sleeping
- Loss of appetite
- Shortness of breath
- Emotional Support
Emotions run high when there is a seriously ill child in the family. Anxiety, depression, anger, guilt and fear are just a few of the emotions the hospice team helps the whole family face. The team is prepared to make referrals for counseling, organize family meetings, recommend support groups or lend a listening ear.
Navigating through the complex medical terminology of numerous medical specialists is overwhelming. Pediatric hospice team members can explain, in layman’s terms, each procedure and help parents wade through the recommendations to decide what steps to take next.
- Outside Assistance
Terminal illness is often accompanied by an avalanche of outside stressors, such as medical bills, insurance claims and the logistics of taking care of healthy children while still being there for the one who is hospitalized or sick at home. There may be other issues the family is facing, such as employment concerns, legal problems or transportation. The care team can identify community resources, answer questions and offer practical suggestions.
- Spiritual Support
When a child is seriously ill, parents question why. No one knows the answer, but those studied in spiritual practices can offer comfort to many families dealing with matters of faith. The chaplain plays an important role on the pediatric hospice team; he or she provides encouragement, prayer, hope, a hand to hold and a shoulder to lean on.