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www.oakvillebeaver.com · OAKVILLE BEAVER Friday, July 2, 2010 · 28 Living Oakville Beaver LIVING EDITOR: ANGELA BLACKBURN By Angela Blackburn OAKVILLE BEAVER STAFF Phone: 905-337-5560 Fax: 905-337-5571 e-mail: ablackburn@oakvillebeaver.com Still speaking out for end-of-life care H ospice may spell death to many, but if you ask Margaret Anderson, founder of the Ian Anderson House (IAH) hospice in Oakville, it's really about living peacefully until death strikes -- even if that death is inevitable. Anderson has spent the last 20 years of her life helping ease those in their last moments -- and helping alleviate the burden of care for their loved ones at a time when those loved ones are burdened with so much else. She continues to do so and casts a scathing eye at the state of palliative care in the province while the push is on to have seniors and the ill remain home as long as possible. While IAH offers support to those who are dying, and their families, it's in the area of support that Anderson believes the government thrust and palliative services need work -- the same areas that fell short 20 years ago when Anderson experienced the shortfall as she cared for her own dying husband. IAH was Ontario's first cancer hospice. Anderson began it as a woman who had not been working outside the home. However she was also one who you could say was traumatized by the all-consuming experience of caring for her own husband in his last days of life as that life was slowly taken by colon cancer. Today, after many more struggles -- this time with bureaucracy, schools of thought and established stereotypes -- Anderson remains at the helm of the IAH hospice, which she fought to establish in the name of her late husband. Located on a treed, quiet lot at 430 Winston Churchill Blvd., it is where clients spend their last days -- free of charge -- in a setting that is as close to a home environment as possible -- while still receiving medical and nursing care. The hospice is also a place that offers to families, rather than the overwhelming and traumatic demands of end-of-life care, the comfort of reliable surroundings, care and an environment in which they can still `be' with their loved one until the America and even noted that obituaries often announce that people die after a courageous battle with cancer. "People endure it because they don't have a choice," said Anderson. Even now at 81, Anderson remains a woman who likes to speak plainly. Both she and her late husband had Scottish roots -- Ian was born in Scotland, she came from a Scottish background. Both were hard workers with a strong work ethic, and both knew the value of being frugal. That's what helped her husband set up a successful business and left $1 million, which she used to establish IAH. Keeping it simple is the message Anderson would give to other hospices -- and the government. While Anderson espouses the philosophy that is hospice -- to provide care in a home-like setting -- IAH is beneath that surface functioning very much like an institution. However it sits serenely outside the realm of government funding as it offers a peaceful garden in a six-bed house to those at death's door. That means it can offer care outside the usual institutional rule book -- IAH instead follows etiquette. Its clients are not tied to strict meal or visiting schedules, and health care workers don't sport uniforms. It also means Anderson can continue to do what she does best, speak plainly and advocate on issues of palliative care. Anderson is passionate and vocal about the need for Ontario's health care system, particularly palliative care, to be less complex, less bureaucratic -- more simple, but more effective. She's the first to note the provincial government's own thrust to keep people at home longer cannot be successful if supports are not in place for the individual and their family. Anderson said she doesn't believe the system is currently working. If a hospital declares a patient to be palliative, the person's next stop is the Community Care Access Centre (CCAC) through the Local Health Integration Network (LHIN). The CCAC offers homecare services such as nursing and personal care worker support, even equipment, through contracts with various local agencies like the Red Cross. Based on health status, Ontario residents should qualify to access varying degrees of those services, said Anderson. However, many people don't know that. Further, if a family caregiver is swamped providing care, they may not be up to pursuing services through bureaucratic channels. Nor should patients and families feel pressured to move from hospital to long-term care -- often when it is only available at a far distance from home, said Anderson. Communication needs to be ramped up, in Anderson's view. To that end, while many may not enter IAH for their last days, the IAH Resource Centre has been established to provide information. In that way, it can help more people than those who spend their final days at IAH. IAH does not receive government funding outside of $460,000 it gets to provide services to its clients. It came close, but didn't qualify as a six-bed, rather than 10-bed unit with a smaller footprint. The funding however also came with a demand that the government pick the people entering the hospice. Anderson said IAH governs its own waiting/admission list and further said she doesn't believe largersized hospices are effective. Some run other programs as well as hospice and Anderson said the atmosphere is "too busy." "Our house isn't so gloomy, but it's not upbeat," said Anderson. Back to the politics of palliative care issues and Anderson said many issues surrounding what's dubbed "an expected death" are not ideal. Anderson said she doesn't care for the leaving of blank death certificates with the person expected to die. Nor does she think families should feel pressured to pre-arrange funerals or not call 911, said Anderson. The average stay of an IAH client is two weeks, though that is becoming shorter these days. Anderson herself remains a fixture at IAH -- and intends on staying at the front of advocating for improved palliative care. "At age 81, it keeps me out of the pool halls," said Anderson. ERIC RIEHL / SPECIAL TO THE BEAVER GRIM REALITY: Margaret Anderson, who built Ontario's first hospice, Ian Anderson House (IAH) in Oakville, in memory of her husband. end. Hospice is about not having to be in the hospital environment or following a schedule of meals and visiting hours, rules and regulations -- for both patients and their loved ones. Anderson was moved to set up Ontario's first hospice in Oakville nearly 20 years ago. She was driven by her own personal experience with her husband, Ian. The struggle to establish IAH was understandable, she concedes ... hospice was a new philosophy on the provincial landscape; end-of-life care is not something people want to discuss; and, she was more or less an unknown quantity. But now, 20 years later, Anderson said IAH has a solid reputation, is respected and known, and operates on a very professional level. On the surface, it offers end-of-life care delivered in a home-like setting. "It's not their home, but it's like home," said Anderson, realistically. While death is part of life and more accepted as such in other parts of the world, Anderson said people tend to avoid or shut away death in North