Discussion Group, A grande dame out to deinstitutionalize death

Patricia Murphy

September 21, 1997

Local Heroes
AT A RECENT ROTARY CLUBMEETING, MARGARET ANDERSON was introduced as a woman who formerly “never did anything.” She will tell you herself that she has no medical background, that she hadn’t worked outside the home since 1959, and that in her 60-odd years she has never even volunteered. But her inexperience doesn’t matter: There is, after all, no formal program of study for a local heroine, especially if she makes her mission founding a free-standing cancer hospice.
You might say Margaret Anderson gained her real managerial expertise and medical training on the job: For three years, she nursed her husband, Ian, through his struggle with the disease until he died, as was his wish, at home. Through her husband’s illness, particularly in its final stages, Margaret came, firsthand, to appreciate the toll that living with cancer takes on individuals and their loved ones, who tend increasingly to be also their caregivers. And she became aware of the distress of other cancer patients who wanted to leave hospital but could not be cared for at home. She responded by building a home for people dying of cancer — Ian Anderson House.
During one of his hospital stays, Ian shared a room with a man dying a dreadful death just on the other side of the curtain. The man’s wife, bewildered in the midst of her trauma, nevertheless came around to the end of Ian’s bed to apologize for his screams; the thought that her own husband’s anguish was contributing to that of Margaret and her husband only added to her burdens. Later, when the curtain was drawn, Margaret, too, became alarmed: Not only did this couple have no privacy and no power over life and death, but the woman, there by the bedside day after day, didn’t even have a chair. The hospital hadn’t provided one, and in her distressed state, she didn’t have the gumption to demand one.
Why fuss over such a small oversight on the part of a large institution with so many other priorities? “Someone with a terminal illness has already lost so much, especially control,” Margaret argues, in explaining the large importance of little touches. With no defence against death, these individuals must be free to exercise the subtle daily choices that constitute life itself. “They need as much autonomy as possible. They should be able to eat dinner when they want to. They should also have time alone with their loved ones before they die.”
But an individual with terminal cancer often cannot be cared for at home, even when the government provides home care: The main caregiver may be elderly or unable to get time off work, or the family may have small children who also need constant care. Often, the principal caregiver becomes emotionally and physically burned-out and needs a break too.
To let terminal cancer patients eat dinner when and where they like — to deinstitutionalize death — two years ago Margaret established the Ian Anderson House Foundation as a charitable foundation. She endowed it with $1 million from Ian’s estate to allow terminal cancer patients to get palliative care in a homelike setting, and to provide their families and friends with support. Margaret sees her act as part of a larger trend in the deinstitutionalization and deregulation of the behemoth that is now modern medicine: “The simple and instinctive idea of helping each other out has become too complicated,” she shrugs. “We should just get on with it and fill a need in some small way.”
From hospice to hospital — and back again
The concept of hospice is ancient. By the Middle Ages, the hospice became a place of sanctuary or charitable refuge, offering kindness and generosity to the poor, the sick, and the dying, and especially the pilgrim or traveller. Typically associated with a monastery, hospices or “guesthouses” also provided compassionate care and palliation for the aged and infirm.
The famous hospice of St. Bernard, which still shelters those crossing the Pennine Alps between Italy and Switzerland, was built by St. Bernard of Menthon, a 10th century monk. Since the 12th century, it has been run by Augustinian monks who, with the help of St. Bernard dogs, have saved many stranded travellers.
While hospices were “homes away from home,” hospitals provided a more clinical environment. The oldest hospital still in existence is the Hôtel Dieu in Paris, founded some time in the seventh century. The Spanish government of Hispaniola built the first hospital in the Western Hemisphere in the Dominican Republic in 1503. Canada‘s first hospital opened in Quebec in 1639.
Hospitals in European cities and towns in the early 1700s operated as charities, serving mainly the poor or the victims of contagious diseases. Because the early hospitals were dark, dirty and crowded, and the principles of sanitation unknown, they were themselves hotbeds for disease. The wealthy were treated at home.
But once an illness became incurable, physicians weren’t welcome at a dying person’s bedside, partly because it was considered unethical to take money when a cure was impossible, but mostly because death was a religious event. To assure a “good death,” English parishes paid “watchers of the dying” to keep the dying poor company throughout the night. Only later that century did doctors begin to “manage” death by the use of opiates.
By the late 1800s, biological and medical discoveries such as germ therapy, antisepsis and anesthesia had made medicine, and particularly surgery, much safer and less traumatic. However, the hospital remained a place for the poor, and most sick people of any means still preferred to be treated at home.
The growth of the modern hospital followed the rapid growth of cities during the industrial revolution. As the health needs of a burgeoning urban population expanded and the medical profession required teaching and research facilities, medical skills and facilities centralized in the hospital. Because doctors could not obtain the necessary standard of sanitation in private homes, more and more people, rich and poor, began to visit the hospital for treatment. The charity hospital gave way to a place for private patients who paid at least part of their hospitalization costs.
In the 1930s and early 1940s, antibiotics further reduced excessive death and disease from surgical infection, enhancing the modern hospital’s stature. After the Second World War, a rapidly advancing medical technology, accompanied by government funds for hospitals and publicly funded health insurance, expanded the hospital’s role. It became the choice for the majority of people of all social and economic classes, and it assumed responsibility for two processes previously confined to the home — being born and dying.
SEVEN YEARS AGO, AFTER IAN’S DEATH, Margaret had no intention of building a hospice. Wanting both to thank her fellow citizens in Mississauga, Ontario, and to honor her husband, she offered to donate the $1 million to build a palliative care wing in the local hospital that had treated him. But the hospital politely refused Margaret’s offer, because governments don’t compensate hospitals well for palliative care: A palliative care wing would only drain the hospital’s resources. Margaret gave the hospital a new lift instead to thank it for its trouble, then offered the money to a local home hospice group. The group jumped at the offer but six months later Margaret balked when she saw the site it chose: a commercial lot beside a gas station at a major intersection. Margaret decided she’d do it herself.
She found the setting for Ian Anderson House in a 1.8 acre treed lot that backs on to a ravine and creek in the neighboring Town of Oakville. The land required rezoning — and the permission of town council. Margaret acquired a developer’s skills, shepherding her project through the rulemaking rigamarole. Before the new bylaw could even be written, the Oakville planning committee had to come up with a working definition for the very idea of “hospice.” It finally did and changed the zoning from park belt and light industry to a “site specific” hospice zone.
The 4,700 square foot house has six private bedrooms, each with its own washroom, individual heating controls, and call button to a central nursing station — designed not to look like a nursing station. It has a state-of-the-art therapeutic tub, central vacuum system, and sprinkler, alarm, and emergency lighting systems throughout. With one fully adjustable, hand-controlled bed already in place, Margaret hopes that the remaining five will be donated.
The bungalow style, with wide corridors and doors, lets residents move easily to common areas such as the living room, kitchen and dining area, and the lounge at the back that opens to a covered patio. From the patio, they can enjoy the sunken flower garden, which will have benches, paths, bird feeders, and if Margaret has her way, a vegetable garden. The Oakville Junior League is building a children’s play house.
Admission to Ian Anderson House, limited to those with cancer and less than six months to live, is free. Those with home support, but whose caregivers need rest from the strain of looking after them, will also be admitted for two weeks. As a former caregiver, Margaret appreciates the importance of this respite care.
Margaret has built a home, not a clinic, where residents receive 24 hours a day care by staff and volunteers trained in palliative care. Needless to say, Ian Anderson House will have few planned meals but plenty of chairs. It will draw on and complement the existing community resources: Each resident will remain under the care of his family physician and if he qualifies for government-provided home care services, a case manager will arrange for services such as physiotherapy, nursing, homemaking and supplies and equipment. Ian Anderson House plans to offer free seminars on such subjects as the art of palliation, the spiritual and psychosocial aspects of illness, and bereavement.
While Margaret put up the capital for the project, the home’s annual operating funds — estimated at about $350,000 — will have to come from private donations, community initiatives, fund-raising events, and especially from families or friends of residents. She wants Ian Anderson House to be a living model of “a community looking after its own.” Margaret is confident that as the ancient idea of hospice — of neighborly concern, generosity, and a special kind of hospitality — makes a modern comeback, governments will take note. Perhaps death will begin to seem less foreign too.
Thus far, community support for the project has been overwhelming. Margaret has received so many donations — over 200 already — that it’s difficult to find enough things to put plaques on. A gala held in Oakville in May raised almost $40,000. To date, over 75 people, including a number of registered nurses, have volunteered their time.
THE IDEA OF A FREE-STANDING HOSPICE shines in many ways. Often, hospitals place palliative care beds in an acute ward or scatter them throughout the hospital, ruling out a peaceful, homelike environment for patients and their families. More typically, those palliative care wards that do exist are disappearing altogether due to government cutbacks. Nursing homes are hard pressed to provide beds for the chronically ill and aged, not to mention meeting the burgeoning need for palliative care. As a general rule, they do not take palliative care patients. In this era of health care restructuring, the delivery of health care shifts increasingly from hospital to home.
An acute care hospital bed, not including doctors or surgery, costs an average of $600 per day. Ian Anderson House estimates its daily cost at $169, even less than hospice care in people’s homes. The low cost comes of eliminating overhead — Ian Anderson House doesn’t even have a paid executive director — without skimping on amenities that residents want. Ian Anderson House will provide round-the-clock care, something government health services, even when complemented by volunteers, find difficult to provide in a private home setting. And it offers an invaluable, yet intangible benefit — a free-standing hospice creates a natural community of support and expertise in all aspects of care for both the patients and their loved ones.
ALTHOUGH BORN INCANADA, MARGARET AND HER FAMILY moved to Edinburgh when she was nine. Ten years later, she moved back to Canada and worked throughout her 20s in Toronto, first for Yardley’s and then for Shell Oil. Ian, who was born in Glasgow, Scotland, came to Canada in 1953, at age 22. A chemist, he found a job with Canada Packers, working first in the laboratory and then in sales and marketing. Nineteen years after joining, Ian took the gamble of his life by leaving his secure job to enter into a partnership with Alkaril Chemicals in Mississauga.
Margaret says that she didn’t have to go out looking for a husband — she just had to answer the door. One day she found a rather cocky young man and his school chum on the stoop, looking for friends from Scotland who were staying with her. The rest, as they say, was chemistry.
After the birth of her son, Stuart, Margaret decided not to return to the workforce — in the early ’60s, few women with young children worked outside the home. But nothing prevented her from studying at home. Margaret finished high school by getting copies of the Grade 13 curriculum from the local collegiate and home-schooling herself. Twenty years later, she graduated from the University of Toronto with a BA in politics and economics.

Margaret Anderson is quick to tell you that Ian always believed in giving back to his community. Through Ian Anderson House, they both have.

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