End-of-life care has improved for the developmentally disabled
By Sterling Rouse

People who suffer from terminal illnesses often take advantage of hospice services in the last days of their lives. Hospice is an end-of-life care concept that is designed to provide comfort and support to patients and their families. For people with disabilities, however, the option to use these and other end-of-life services has not always been available.

“It used to be that people were being shipped off to nursing homes to spend their last days in an environment where they don’t know anyone,” said Larry Weishaar, ResCare support services vice president.

Mr. Weishaar serves on the national advisory committee for Last Passages, an organization devoted to improving the range of choices and the quality of end-of-life care for people with intellectual and developmental disabilities. The organization, an offshoot of Volunteers of America, seeks to make the end of the life cycle more natural and less clinical for people with disabilities and their families.

To achieve its goals, Last Passages has identified various strategies, including conducting a national survey of end-of-life care activities in order to identify promising leaders, advocates, practices and needs; conducting training sessions on the integration of end-of-life care into the intellectually and developmentally disabled community; and developing communication, collaboration and partnering relationships between end-of-life care providers and advocates, care providers and families of persons with disabilities.

The single biggest improvement that Mr. Weishaar said he has seen in end-of-life care the past few years is the increased availability and utilization of hospice services.

“We have had some wonderful experiences with the people we support,” he said.

During training sessions with direct support professionals, Mr. Weishaar said he tries to focus on preparing not only the people who receive supports with end-of-life issues, but also family members, housemates and staff.

“It is pretty devastating for members of the staff who have worked with someone for a number of years,” said Mr. Weishaar. “It is like losing one of their family members.”

Such was the case for staff who had worked with Cynthia Porco, who passed away December 17, 2004 after battling ovarian cancer. Ms. Porco had resided at the Belmont Habilitation Center in St. Clairsville, OH for more than 20 years.

Hospice services allowed Ms. Porco to spend the last few weeks of her life at home. The staff at the Belmont Habilitation Center worked with hospice staff to make sure they understood Ms. Porco’s special needs. At the same time, hospice helped the staff, some of whom had worked with Ms. Porco for several years, cope with her illness.

“Hospice also enabled the staff to go through the process with her,” said Belmont Habilitation Center Executive Director Tonya Mangerie. “A lot of social workers and counselors met with family members and support staff.”

Ms. Mangerie said that without hospice Ms. Porco likely would have spent her last days in a nursing home or hospital.

“She was able to pass here with dignity and have a much better quality of life than she would have had at a nursing home or hospital,” she said.

Terry Bunner, a clinical supervisor at a ResCare West Virginia group home in Fairmont, noticed that Leroy Rowan remained cheerful while under hospice care in the weeks leading to his Feb. 7 passing. He said he partially attributes Mr. Rowan’s positive attitude to being able to remain at home in the presence of family and friends.

“It would lift your spirits up just watching him in the living area, with everybody sitting in a circle and laughing,” said Mr. Bunner. “Even though he wasn’t doing that great, he was having a good old time.”