Frequently Asked Questions
1) Why is Sarah House needed?
There is an unmet need in Cincinnati, a gap exists between the acute hospital setting and home care. There needs to be a full service, free standing facility that provides respite, transitional and end of life care for children with life-limiting conditions. This gap is widened by the fact that Cincinnati and surrounding cities like Indianapolis, Columbus, and Dayton have some of the best children’s hospitals in the nation. Cincinnati Children’s ranks in the top ten nationally, and many out of town patients come to the region. Respite and end-of-life care, inevitably follows.
2) Where would you want to build Sarah House?
In an area that is very accessible to major highways, that offers a very serene and secluded environment. Ultimately, and most coveted, wherever a generous individual or company would donate the land necessary to build it.
3) How is a life-limiting condition defined? How difficult is it to treat at home?
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:
One only needs to ask a parent caring for such a child how the illness affects their child, the other siblings, and themselves. The significant physical, emotional, and spiritual demands that occur can’t be measured by those who have not faced it.
fail.
provide good quality of life but for whom a premature death is anticipated.
cure, but who will live for prolonged periods of time.
progressive or immediately life threatening, but may lead to complications with a risk of
premature death.
4) What is respite care?
Respite care is prescheduled, skilled nursing care for the child with life-limiting conditions that is given with or without the family present. This provides a well-needed, periodic break for the family.
5) What is meant by palliative care?
Palliative care is an approach in the care of children with life-threatening illness that is provided by a multidisciplinary team effort that prevents or relieves the symptoms produced by the disease or its treatment. The goal is to help children and their families live as normal as possible and to provide them with timely and accurate information and support in decision making. Such care is not limited to children who are dying, and it can be provided along with curative or life prolonging treatments.
In keeping with this concept, Sarah House would also provide:
- Transitional Care - focuses on pain and symptom management to provide a much needed link in the continuum of care between the hospital and home.
- End of Life Care - when hospital or home care may no longer be practical and/or desirable.
- Family Care - an individualized program of anticipatory guidance during a child’s illness, offering practical, emotional, and spiritual help to the child and family. Support that continues through the child’s death.
6) What is the difference between Ronald McDonald House and Sarah House?
Ronald McDonald House provides accommodations for immediate family members of any child who has been admitted to Cincinnati Children’s Hospital as an inpatient or who has frequent visits. Ronald McDonald House does not provide any medical care to any individual staying at the residence. If a child or parent requires medical care, they are transported to the appropriate medical facility.
7) How do you determine which children get to stay at Sarah House?
All admissions to Sarah House are based on an expected life span that does not reach adulthood. The age range is birth to 21 years of age. Exceptions will be made for young adults who have been under the care of the pediatric staff at Cincinnati Children’s Hospital. If there is a waiting list, the children and their families with the greatest immediate needs will have priority. Admission criteria will be developed to assess each case individually and objectively. NO family will be turned away for financial reasons.
8) Who can refer a patient to Sarah House? Where would they come from?
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 and Columbus Children’s, and Riley's Children’s of Indianapolis. Children can and will come from other states nationwide, as well as from other countries.
9) What level of skilled nursing care will be provided?
The same level of nursing care the child receives at home would be continued at Sarah House.
10) Is a DNR order required?
No. In the event of an emergency, if a child does not have a DNR in place, basic life support will be provided and a 911 call initiated.
11) Will there be a basic plan of care for each individual patient and family?
Each family will have its own unique plan of care, which will be culturally and ethnically sensitive to all aspects of the family unit (emotional, physical, and spiritual). Sarah House anticipates a population that mirrors the diversity of our tristate area.
Our primary goal is to alleviate the emotional impact of a child’s illness and to offer support and comfort to the entire family unit, including siblings. We will support each family's goals and decisions concerning end of life care for their child.
12) Why wouldn’t you just send a child to an adult hospice facility?
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.