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www.oakvillebeaver.com · OAKVILLE BEAVER Friday, June 18, 2010 · 14 Many residents afraid to complain about care Continued from page 13 some residents choose to change their own colostomy bags. For those who are physically and cognitively capable, "the staff will provide teaching in order for the residents to maintain their independence." Personal support workers assist those who need help with the procedure, she added. The sight of his fellow residents doing little other than sit in a TV room was repugnant to LeLievre. "I couldn't stomach it," he said. Victoria Gardens program manager Tracy Smoke makes efforts to keep residents active, although some are too sick to participate in a schedule of activities aimed at keeping residents busy and socially engaged. And some elect not to participate, choosing to watch TV, read the newspaper or sit at the nurse's station watching people come and go. "So there are some residents who historically, they're not a people person, they never have been," Smoke said. "So there are some people who have low levels of attendance, but it's by their choice." LeLievre said the dead were neglected during his stay. When a roommate passed away, the deceased man was left in his bed for hours. George LeLievre "There's no courtesy there to pull the drape around him," he said. "He lay in that bed all night until maybe 11 o'clock in the morning ... That's not the only one I seen, I seen many of them go that way." Stipancic said when a resident dies in a long-term care facility, a physician is notified to come to pronounce death. Every tenth death is investigated by a coroner. "We can't move the body until either the physician or the coroner have been here," she explained, adding the body is always screened with privacy curtains as part of post- death care. An end stage of the health care system, long-term care is generally acknowledged as the place where those who need 24-hour personal and medical assistance go to live out their last days. Despite the large number of people residing in homes, those who study long-term care say it remains largely an out-of-sight, out-of-mind sector. "I think long-term care has been marginalized from mainstream health care," said Kevin Brazil, a professor in McMaster University's department of clinical epidemiology and biostatistics, an expert in longterm care and care of the dying. "It has been sort of bracketed and pushed aside." Implicit ageism and a "sanitized culture" that distances itself from the realities of death and dying contribute to the marginalization, he added. A Residents Bill of Rights (included in the health ministry's Long-Term Care Act) has long been in place to protect those living in long-term care settings, and a new and expanded version of the bill, containing more than 25 rights, will be in place this summer. But those rights -- the right to be properly clothed and groomed, to privacy, to participate fully in care decisions, to engage in activities good for mind and body, and provision for family and residents' councils through which complaints can be made -- are widely overlooked and often violated in homes across Ontario, advocates for the elderly say. Homes post the Bill of Rights for residents and families to see, but there is pervasive fear of repercussions for complaining. "There are a few things about long-term care that are barriers to the enforcement of any standards or any rights," said Natalie Mehra, director, Ontario Health Coalition, "and one is that residents are afraid of repercussions for complaining, the same as their families." First-hand accounts of the conditions and quality of nursing homes cover the exemplary as well as the questionable. A 2009 survey by the Ontario Health Quality Council found 60 per cent of families rated the care of their loved ones in nursing homes as good. Wendy Renault, whose mother, Janet, 86, lives in Willowgrove Long Term Care Residence in Ancaster (operated by Chartwell Seniors Housing REIT), is a representative case. She said her mother trusts the workers, smiles at them, hugs them and holds their hands. "I figure that's the best testament to the care she gets here," the daughter said. Chartwell officials spoke of the absolute need for empathy and compassion in long-term care. "Most of the people that work in this field are here because this is really what they want to do," said Linda Schertzberg, Willowgrove administrator. "You have to be a strong individual, because we deal with death. They are here for eight hours a day with intense one-on-one with the people they are working with. So they become close to the residents." Administrators in long-term care homes plead lack of funding and staff as a root cause in cases when care is less than optimal. "I don't want to cry about money," said Pat Morden, chief executive coach of Hamilton's Shalom Village, a progressive home with a good reputation. "But it is pathetic what we get, and it's not enough to do what you (the public) want us to do and what we want to do." The Ontario government is currently overseeing a review of funding, but there is no indication yet of what steps -- if any -- come next.