The Role of Pediatric Hospice
Hospice care is care for patients at the end of life. Hospice care is not only physical care, but psychological and spiritual care. Even though we may understand intellectually that the end of life is natural and appropriate in the larger life cycle of humankind on earth, nonetheless, caring for children toward the end of terminal illness can be difficult and stressful for family and friends. Hospice provides professional, knowledgeable and compassionate support for both the terminally ill and families.
Hospice aims to not only relieve suffering but to improve quality of life. Very often hospice care takes place in the home with visiting or live-in caregivers. Often families choose a hospice facility when it becomes too difficult at home.
Hospice is care that is a specific type called palliative care. It includes all types of medical care to relieve a person of symptoms arising from serious disease. A palliative care team will include a palliative doctor who specializes in pain management, symptom control and side effects. The team usually includes nurses, pharmacists, social workers, dietitians. It may also include alternative care providers such as massage therapists, acupuncturists and others who are knowledgeable in this field.
The palliative care team also includes volunteers - and is the role that Rosepetals Hospice fills. Julie Alongi is a full-time volunteer who works with a team of nurses and volunteers. Rosepetals children are often referred by social service organizations and Rosepetals remains in service with them and their families from the time of their diagnosis till the end.
How does Rosepetals help? Rosepetals volunteers seven days a week, often into the middle of the night. Rosepetals does more than visit the children. Rosepetals provides parties and celebrations for birthdays and holidays as well as arrange for summer camp and winter festivities. Rosepetals supports the children's parents, helping them make ends meet, often providing funds for rent or food and sometimes even providing for funeral expenses.
A palliative care team is unique in that it treats the whole person and their family, not only the person physically ill.
Rosepetals recognizes that pediatric hospice is essential for the entire family involved with the care of a terminally ill child .Parents of young children are often young themselves and may have great difficulty maintaining an even keel throughout the traumatic experience of their precious child's passing. The children have not the years of life experience t to help them face the inevitable. Even so, the children often surprise and delight us with their peaceful and even joyous attitude as they complete their stay on earth.
The New Jersey Hospice and Palliative Care Organization provides good information about pediatric hospice. The National Hospice and Palliative Care Organization provides extensive information on pediatric palliative and hospice care. Another excellent resource is the Hospice Foundation of America.
Here are some exceptional hospice services with physical facilities for in-residence care in the NY/NJ area. For more information, please visit their websites.
- St. Barnabas Hospital, Livingston, NJ.
- Center for Hope Hospice, Scotch Plains, NJ
- Compassionate Reach, Randolph, NJ is a senior care center with hospice facilities. They do not have a website.
Parent Support Groups
Parent support groups fulfill a critical role for the families of terminally ill children. Parent support groups provide active mutual healing comfort. Support groups help dispel feelings of loneliness and abandonment in the face of grief. Support groups help validate one's own experience and provide a time away from the fear and anxiety accompanying a child's terminal illness. Support groups provide a broad range of methods and solutions that work best for each parent.
Finding a support group.
- Rosepetals and other hospice organizations will help you find a support group.
- Hospitals have their own support groups. St. Barnabas has a Child Life Program which provides support to children and their families during hospitalization
- Hospices with physical facilities have support groups and most allow non-patient families to join their group.
- The Compassionate Friends: Support after the death of a child. This is a national organization focusing on support for parents with informaiton on local chapters, articles, support for families and friends, events, and other resources.
- Griefnet.org: Support for people - both adults and kids - grieving a loss. The site features lists of parent support groups with descriptions and links to join. Some are email support only, some include discussion.
- Hellogrief.org: Support for adults and kids grieving a loss. This website is more of a blog with articles and some resource recommendations.
At the end of a child's life it is often the children who are most cheerful and positive. But it is uniformly difficult for parents to let their children go, even if they think they are ready to do so. The professionalism and experience of hospice caregivers is a service that makes the process one of dignity and grace for all. By providing palliative care to reduce the suffering of terminally ill children and providing emotional, mental and spiritual support to parents, the process has a chance of being a more natural experience of life.