'A Place of Respite'
By Carla Garnett
On the Front Page...
For many years, Clinical Center caregivers have known of at least one thing almost all patients have in common: When a person is seriously ill, his or her family is also seriously affected. When treating the patient, a good caregiver has to think about treating the patient's family too.
What happens when visiting hours are over for the day and the patient's family leaves the hospital? Often the family has traveled many miles to be with the mom, dad, or brother undergoing treatment. Repairing to a local motel quickly loses its appeal when all anyone wants is the normalcy and comfort of home. Developers of the Children's Inn realized this long ago; the inn's success since it was built in 1990 to help pediatric patients regain a sense of home is well documented. What about families of adult patients, though? Shouldn't there be a warm, homey place for them, too? CC director Dr. John Gallin thought so, and so did members of the Foundation for NIH (FNIH), which has undertaken a project to build an NIH Family Lodge on campus.
"Having a chronic illness places an incredible burden on the family as a whole on marriages, as well as on healthy children of an ill parent," Gallin explained. "The NIH Family Lodge will provide housing for the families and loved ones of Clinical Research Center adult patients. The lodge will also provide transitional housing for patients and their family caregivers after hospital discharge, while they are learning the skills needed to sustain care at home. If space is available, patients who are being treated at the CRC and travel to NIH from long distances, but do not require hospitalization, may use the facility."
The new lodge will replace what had been called the NIH Guest House, before that structure actually several units in Bldg. 20, the apartment that sat at the corner of Center and West Drives was razed in October 1997 to make way for CRC construction. Since then, CC logistics officials have arranged for families of adult patients to use off-campus housing mainly local hotels, motels or short-term apartments. These arrangements work well, but they are far from convenient, inexpensive or homey.
"We need a comfortable place that will provide respite and lodging for families and caregivers of our patients," explained Jan Weymouth, CC space management officer. "Often families come to support their loved ones and must find lodging either in local hotels at great cost or by utilizing the current guest house, neither of which is convenient to the CC."
The current "guest house" is located in eight apartments on Battery Lane about 1.5 miles from the hospital, Weymouth said. Although this is a successful program, and the families who use it are grateful to stay there rather than at hotels, it is not convenient to the CC.
"It cannot accommodate many families," she continued, "and it does not meet their emotional needs like the Family Lodge will do when it provides a comfortable, private environment that will be shared by others who can provide support, if needed."
With an idea of pooling resources with the Children's Inn, Gallin, who sits on the inn's board of directors as a clinical advisor, broached the possibility of adding an adult facility onto the inn. Not wanting to dilute the pediatric focus of the inn's mission, however, board members declined to pursue adding on to that facility. Several on the board later came to Gallin to offer their help in getting another inn-like place built on campus, this one for families of adult patients. How could such a project be financed? That was just about the time the newly invigorated FNIH emerged. FNIH provides donors in the private sector the opportunity to collaborate with NIH in projects that bolster the agency's research and training activities. The Family Lodge building effort fit the bill.
"This whole lodge concept promotes what is called in the medical community 'family centered care,'" remarked Dr. Constance Battle, FNIH executive director. "The idea is that in addition to providing the very best physical medical care, we also need to address a patient's emotional, psychological and spiritual needs. They are concerned about their condition and prognosis, they're undergoing uncomfortable and perhaps painful procedures, they're separated from family and they're often lonely. We plan to create a comfortable, convenient and supportive setting that will enhance the research experience for patients and their families and encourage patient participation in research trials."
The lodge is tentatively being planned as a 35-unit facility, erected near the Lasker Center walking distance to the new hospital where Convent Dr. meets Center Dr. Each unit will be like a small apartment with a bathroom and kitchenette. Each kitchenette will include a sink and a microwave. There will be common gathering and recreation rooms. In addition, Battle noted, a telecommuting center will be installed so residents can keep in touch back home, and perhaps even maintain their jobs by working remotely via computer.
"My experience with the Children's Inn has taught me over and over that families need privacy, but also need support," remarked Weymouth, who also serves as lodge program manager. "The lodge will provide both housing for families here for long periods and who travel great distances, as well as opportunities for those who live close by but need a rest or a shower or just a place to get away from the hospital for a few hours. When space allows, outpatients will have the opportunity to use it on a daily basis while in treatment, rather than waiting in the halls or public spaces of the CRC. We can do so much more to provide comfort to our patients, their families and caregivers in a place so close to the CRC that it will just take minutes to reach their loved ones. In this way they will always feel connected both to their loved ones and the CRC."
So excited are Gallin and his wife, Dr. Elaine Gallin, at the prospect of a lodge that this year they have donated half of his retirement pay from the Commissioned Corps to the effort.
"With NIH's new clinical treatment programs particularly solid organ transplants and bone marrow transplants a greater number of patients with higher acuity illnesses are now staying longer at the Clinical Center than before," Gallin said. "I have seen in my own patients the tremendous benefit of having family members nearby while they participate in the studies here."
Soon, the project will begin seeking architectural design firms and others to develop the physical aspects of the building. The Office of Research Services will handle that portion of the project, Battle said. But like the other stages of lodge planning, people involved already have an idea of what they want in the architect as well as in the final product.
"The site is important for its beauty and its proximity to the hospital," Battle concluded. "We want an architect who can design in the spirit of the lodge a comfortable, convenient place of respite for regrouping and refortifying during the high stress of being ill."
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