One only needs to ask a parent caring for a child with a life-limiting condition how the illness affects their child, the other siblings and themselves. The significant physical, emotional and spiritual demands that occur cannot be measured by those who have not faced them.
A life-limiting condition is any condition which has the possibility of premature death. There are four groups of children who, when diagnosed with their disease, would be considered to have a life-limiting disease or condition:
- Children with diseases such as cancer for whom curative treatment is available but might fail.
- Children with Cystic Fibrosis or HIV Infection for whom routine aggressive therapy may provide good quality of life but for whom a premature death is anticipated.
- Children with progressive diseases such as neurodegenerative diseases for whom there is no cure, but who will live for prolonged periods of time.
- Children with severe neurological disabilities or congenital anomalies that are neither progressive or immediately life threatening, but may lead to complications with a risk of premature death.
StarShine Hospice at Cincinnati Children’s is an excellent pediatric hospice program. However, StarShine is exclusively home- care, with hospital inpatient care on an emergency basis. Sarah House will provide an alternative facility for these patients. As such, StarShine could refer patients to Sarah House.
Ronald McDonald House provides accommodations for immediate family members of out-of-town patients admitted to Cincinnati Children’s Hospital Medical Center. It does not provide medical care to persons staying there, nor does it offer a quiet, private end-of-life environment for out-of-town families whose child declines while inpatient at the hospital. Sarah House will provide such an option.
Persons in the medical community who have been informed of the plans for Sarah House are very supportive. They understand the need and approve of the concept. Sarah House board members will soon be sharing the program with referral sources throughout the region.
A feasibility Study, Survey and two Parent Focus Groups were conducted to ascertain the potential demand for such a facility. The parents had either recently lost a child or currently had a medically fragile child requiring intensive round-the-clock care. They provided valuable input as to what, from their perspective, the “ideal” Sarah house would be like, both physically and programmatically. Most importantly, all indicated that they either would be or would have been grateful to have the option of Sarah House for respite and/or end-of-life care for their child.
Sarah House will be run by its Board of Trustees as its policy-making body, and by a highly qualified staff on a day-to-day basis.
Eligibility will be age birth to 21, without regard to economic status, race, or religious affiliation. Patients would be medically fragile but without self-injurious or aggressive behaviors, major psychological disorders, or communicable diseases. If there is a waiting list, the children and families with the greatest and most immediate need will have priority.
Anyone can make a referral, however, most referrals will come from health care professionals involved in a child’s care. The primary healthcare provider must participate in the referral process. The medical staff at Sarah House will coordinate with the child’s primary care doctor.
Many referrals would come from the surrounding Children’s Hospitals, including but not limited to Cincinnati Children’s, Dayton Children’s.
There are currently several similar facilities successfully operating in other cities, notably George Mark House in San Francisco and Ryan House in Phoenix.
Children are not small adults. Each child and family unit is unique and their needs are equally unique. These needs require the skilled care of professionals who deal with the physical, emotional, and spiritual needs of children on a daily basis. Conversations that one has with a five or ten year old, let alone an adolescent, is much different than that of an adult.