When Dick Tibbetts was dying of colon cancer, his wife Barbara had no choice but to leave him in a nursing home. It broke her heart to see him cry at the end of their visits. All he wanted was to go home. But Tibbetts was too sick to leave.
“He was really unhappy,” Barbara Tibbetts recalled. “He didn’t see anyone. He didn’t hear anything in that room. It was like he was in isolation.”
Unfortunately, the couple’s experience is not unusual.
Until recently, hospitals and nursing homes were the only options in southern Maine for terminally ill patients too sick to be managed at home. The institutions provided 24-hour medical care, but often failed to address the complex emotional, psychological and spiritual needs of terminally ill patients and their loved ones.
Helping to close that gap is Gosnell Memorial Hospice House, dedicated exclusively to supporting end-of-life needs of adult patients. On Aug. 1, the 18-bed Scarborough home opened to serve the sickest and most fragile patients in their final six months of life.
Up to 700 patients from Cumberland and York counties are expected to use the hospice house in 2008. The facility is the first of its kind in southern Maine.
‘Best place in the world’
For Dick and Barbara Tibbetts, the new hospice house was a godsend. Barbara contacted the hospice house after a worker at the nursing home handed her a brochure explaining the new services.
“Moving into the hospice house changed Dick’s whole attitude,” said Barbara. “He began to laugh and talk again. Relatives and friends came by to visit. It was the best place in the world for him, and the only thing they did was keep him comfortable.”
Dick was evaluated and admitted on the first day the hospice house opened. Medicare provided coverage. Medicaid and many private insurers also may cover hospice services.
All patients admitted to the hospice house are in their final weeks of life. Many, like Dick Tibbetts, suffer from cancer. Others are in the late stages of Alzheimer’s disease. Some may have terminal heart, liver or lung disease.
The goal of hospice is to provide comfort or care to terminally ill patients. Hospice workers describe their approach as treating the person, not the disease.
Patients may stay at the house briefly to get pain and other symptoms under control. Others spend their final days there. Dick lived at the hospice house until his death Aug. 20.
Gosnell Memorial Hospice House does not provide medical intervention to rehabilitate patients or keep them alive. But a team of care givers offers pain relief, spiritual support and specialized care tailored to meet end-of-life needs.
The team consists of a doctor, nurse, home health aide, social worker, volunteers and a chaplain. But it is the patient and patient’s family who direct care.
Loud prayers and acceptance
Although hospice is part of mainstream U.S. health care, Maine has had one of the lowest utilization rates in the nation. Advocates are determined to change that.
Developing the new hospice house was a community endeavor. More than $5.5 million in donations funded the home’s construction in a quiet neighborhood off Route 1.
A Scarborough family donated five wooded acres for the building site, providing seclusion and a buffer for nearby homes.
The hospice house looks and feels like a home, but a nurse is on staff 24 hours a day. Volunteers visit patients and provide much-needed relief to care givers. A social worker offers guidance and compassion. A chaplain is available for families seeking spiritual support.
The private rooms for patients are large enough for a family member to spend the day and night. Rooms have a kitchenette and sofa that converts into a single bed. The dacor is cheerful, with outdoor views and bright artwork on the walls.
There are few restrictions on visitors. Barbara and other relatives could see Dick anytime, no matter the hour. Barbara said there always were muffins and a fresh pot of coffee brewing in the home’s large kitchen, where meals may be individually prepared for patients.
Dick Tibbetts appreciated the staff’s attention. The small touches, Barbara said, seemed to mean the most.
Dick also enjoyed the quietness and the fact the hospice house did not look like a hospital, she said. Barbara was able to bring a lobster roll from home. Another time the chef at the hospice house made him a poached egg on toast, when he asked for it.
Dick prayed loudly and without embarrassment as he neared death. He asked to be wheeled outside, where he watched for a family of wild turkeys that came out at dusk.
The hospice house also educates and supports family members who provide care to patients through the dying process. Bereavement support to family members extends for a year after the patient dies.
Barbara said she felt relief that her husband finally was comfortable after the stressful weeks he spent in a hospital and nursing home.
“The staff completely spoiled him,” she said laughing. “I can’t say enough for them. Dick could feel vulnerable and be accepted.”
Patients and families are sometimes caught off guard by their emotions after arriving at a hospice house, said Jody Deegan, chief executive officer at Hospice of Southern Maine. The nonprofit agency oversees the hospice house as well as a vast network of community support for patients in their homes, hospitals and nursing homes.
The hospice model considers the needs of the whole patient, unlike traditional medicine, which focuses on disease and intervention, said Dr. Lauren Michalakes, medical director at Gosnell Memorial Hospice House.
“We watch people come through the doors and see their anxiety levels decrease,” she said. “They just feel the warmth pulling them in. Hospice allows them to deal with the reality of living and dying.”
Construction was nearly complete in June on the Gosnell Memorial Hospice House. The 18-bed facility opened Aug. 1 to serve terminally ill patients who are too sick to go home.Send questions/comments to the editors.
