It was the simple things that counted for so much: a hot cup of coffee in the morning, deciding when to take a bath, even the right to iron clothes.
In a survey of 455 nursing home residents in 15 cities, conducted by the National Citizens' Coalition for Nursing Home Reform, a running theme throughout the responses was the desire to have choices and freedom and to be included in decision-making at the home.
Elma Holder, executive director of the coalition, said the study was the first nationwide, organized review of what nursing home residents have to say about their care.
In the past, the issue has been discussed among government officials, nursing home providers, health experts and outside patient advocates, but the voices of the residents themselves have been largely absent, Holder said.
The survey project culminated with an unusual national symposium at Clearwater Beach, Fla., in February. More than 100 nursing home residents from around the country were brought together to describe the problems where they live. One hotel was turned into a temporary nursing home for three days and local nursing homes donated staff and supplies for the event.
The survey found that the first concern of the residents was with the attitude, quality and size of staff in the home. The next most important factor in quality care was the size and privacy of rooms. Next came food and activities.
But over and over again, the residents said that having a choice was key to their happiness -- whether the decision is on the food to be eaten, when to get up and go to bed, whom to have as a roommate, or the choice of a personal care attendant and physician.
"I don't really have a choice," said one resident quoted in a summary of a panel discussion at the symposium. "The morning nurse wants me to sleep until 8:20. I want to get up at 7:30, so I can watch the news, which is important to me."
The same woman said that although she has a "private" room, she hears the woman next door who is confused and continuously calls for help. "The nurse's aide goes somewhere far away where she doesn't hear her [the confused neighbor]. But I hear her."
Others complained about having people "literally talk over your head" if the resident is in a wheelchair and act as though the resident is not there or cannot understand.
Part of the coalition's study asked an open-ended question about what factors would contribute to a better quality of life in a nursing home, and many of the individual responses dealt with the mundane: being able to keep cough drops, the right to skip a meal, jigsaw puzzles, being allowed to stay in a robe for breakfast, quiet in the morning, and having one's own possessions.
Desired activities ranged from bingo to electronic games, ice cream parties and beer parties, visits to parks, ironing and circuses.
Julie Trocchio of the American Health Care Association, which represents 8,500 nursing homes and long-term-care facilities, said trying to allow choices is a priority of nursing homes. At the same time, choices cannot be unlimited in facilities that must deal with the needs of large numbers of people, she said.
For example, the time when residents go to bed affects the time that televisions must be turned off, said Trocchio, who has served on the coalition's advisory committee.
"Only so much choice is available at an institution, whether you are talking about a university or a hotel or a nursing home," she said.
Coalition officials said the survey was in part a response to controversial nursing home regulations proposed in 1982 by the U.S Department of Health and Human Services. After nursing home advocates expressed fears that the regulations would weaken current protections of nursing home residents, Congress put a moratorium on the regulations and new ones have not been reissued.
Members of the Senate Committee on Aging said the coalition's survey showed the need for mandatory training for nurse aides, elevating residents' rights to a requirement under the Medicaid and Medicare programs, and formal inclusion of residents in the certification process at nursing homes and in government agency discussions on long-term care policy.
In a letter to Carolyne K. Davis, administrator of the HHS Health Care Financing Administration, committee chairman Sen. John Heinz (R-Pa.) and ranking minority member Sen. John Glenn (D-Ohio) asked that the project's findings be incorporated into the current review of nursing home regulations.