Who cares?
As Canadian families gather to celebrate their elders this weekend, unseen thousands of other seniors are living lives of desperate isolation and illness, neglected by a home-care system in crisis. These are the patients young Toronto doctor Mark
Nowaczynski visits in his neighbourhood rounds. Today, The Globe and Mail presents an exclusive selection of the remarkable photographs he has taken, to put unforgettable faces to what public-health reporter ANDRÉ PICARD describes as the 'incoherent mess' of home care in Canada

By André Picard
Saturday, May 11, 2002 – Print Edition, Page F1

That Mark Nowaczynski is a doctor who makes house calls is unusual enough these days. That the young doctor brings along his camera, and makes accomplished amateur portraits of his elderly patients, to illuminate their isolation and their desperate need for better support, may make him one of a kind.

Dr. Nowaczynski is a Montreal-born family physician who has been in a group practice for the past decade at Yonge Street and Eglinton Avenue, in the centre of Toronto. He spends much of his time walking to downtown apartment buildings and seniors residences to check up on a fiercely independent, but nearly invisible clientele -- housebound patients, often with multiple medical conditions, struggling to survive on their own.

"These are people who are very vulnerable and very high risk of slipping through the cracks," Dr. Nowaczynski said. "If we're seeing this in the geographical centre of the biggest and best-serviced city in the country, the magnitude of the problem is more than anyone realizes."

A long-time amateur photographer, Dr. Nowaczynski decided in 1998 to document his patients' lives in their lonely rooms. He is working toward a large-scale exhibition that would put faces to a problem he feels no "just society" can ignore -- with all of "their strength, their frailty, their individuality, their dignity, their stoic suffering, their joys, their fears, and the starkness and immediacy of their existences."

The care provided by Dr. Nowaczynski and other physicians and nurses is done on a shoestring. Nationally, governments spend $2.1-billion annually on home-care programs, a tiny fraction of the $105-billion in yearly health spending.

A recent report prepared for Health Canada concluded that Canada's home-care system is not a system at all: Rather, it is an incoherent mess of programs providing widely varying levels of services and care.

According to Statistics Canada, 523,000 adults, or 2.4 per cent of the population, received home care in 1994-95, the most recent year for which statistics are available. The majority, 64 per cent, were seniors. Most of the rest were children and adults with chronic physical or mental disabilities, who required ongoing care outside a hospital setting.

In recent years, however, governments have shifted home-care dollars. Instead of long-term care in the home, they are emphasizing short-term care for patients who would otherwise be recovering or treated in hospital beds. In the process, a far greater burden has been shifted to so-called informal caregivers -- family, friends and volunteers who have to provide the bulk of care for frail seniors and people with chronic conditions.

Those who do get professional care in the home tend to be isolated and alone, and have severe health problems. In Dr. Nowaczynski's practice, his patients' friends often are dead or infirm themselves, and family is either distant or non-existent. The vast majority of his patients are women, he said, widowed or never married -- but male or female, "most of my patients would rather die than go into a long-term facility." They represent a significant minority of the population, and adding more nursing-home beds is no help to them.

Taylor Alexander, chief executive officer of the Canadian Association for Community Care, said the Health Canada study accurately pinpointed the problem: Home care is inequitable across the country, because there are large variations in eligibility criteria, access criteria, funding and user fees.

"There are two parallel systems of care in this country: the medical acute-care system with guaranteed insured access under the Canada Health Act, and the patchwork quilt of uninsured services in home and community care," Dr. Alexander said. "We need a commitment to a new model of care and have been calling for federal leadership to establish a national program."

The authors of the report, health-care analyst Marcus Hollander and University of Victoria Professor Michael Prince, outlined a comprehensive, national plan to restructure home-care services and to integrate them fully into the existing health-care system.

But for the model to work, they concluded, there first needs to be a shift in philosophy. The acute-care model, which is focused on curing disease and treating medical conditions, need to be supplemented with a "supportive model of care" that aims to provide Canadians with the best quality of life possible, by providing the appropriate health and support services for each person's condition.

While medical care is important, Dr. Hollander said that other, seemingly trivial services -- ranging from shopping help to "supportive housing," which provides staff to keep an eye on shut-ins and help with light housekeeping and other daily needs -- matter just as much. As Dr. Nowaczynski said of several of his patients, "The small amount of help they receive makes the difference between them being able to live independently and ending up in a nursing home."

The assumption that these programs are not cost-effective is wrong, Dr. Hollander said, because they keep people healthier longer. He said the vision put forward in the report is that of a seamless, integrated system of care including community, residential and specialty hospital services, that will reduce demands on hospitals and contribute to the overall cost-effectiveness of the broader health system.

In a report released last year, the 400,000-member Canadian Association for the Fifty-Plus, which goes by the acronym CARP, graded home-care services in each province and nationally, and there were poor marks across the board. CARP noted that the provinces do not even have a common definition of home care, let alone standards for services and workers, adequate funding and planning.

Lillian Morgenthau, the founder and president of CARP, said that Canadian seniors believe it is essential that a home-care system "be built by design, not be default."

Meanwhile, Dr. Nowaczynski continues his efforts to confer dignity, not only with his medical attentions, but with his art. For his patients, it is often a very moving experience.

"They are at an age where many of their friends had died," he said. "It's very hard to make new friends, and many of them are not that sociable. I have many patients where the only person who visits regularly is myself, on medical rounds, and my visits are to deal with their medical issues and I'm not a substitute for family or friends.

"This project," he said, "is something that for many of these people has become meaningful. They feel that there's some benefit that will come out of this for others. When I came to photograph Vera R., she told me she had never been photographed in a 'studio,' and said, 'You're going to all this effort to photograph me?' She was incredulous that I was interested in viewing this.

"These are very private and intimate environments. Very few people are permitted into their lives."

Ms. Constance C., 91, never married, blind, sick and frail, lives alone with her cat, Oscar. 'Like many of my patients,' said Dr. Nowaczynski, 'she would rather die than move to a nursing home.'

Mr. William S., 67, October, 1998 (above): A retired security guard, William S. had lived a very private life. He recovered from a stroke, then developed colon cancer; after abdominal surgery, he elected to live with a colostomy rather than go through another operation. His apartment was one of 200 in a city-owned seniors building; his rent was partly subsidized, and a supportive-housing program supplied light personal care that allowed him to stay on his own.

'You can see,' Dr. Nowaczynski said, 'that he's surrounded by everything he needs, at arm's length -- his medications, mug of beer, shaver, bag of chips, and newspaper. You can date the image by the copy of The Toronto Sun showing Bill Clinton's face. It's a typical setup in a lot of seniors apartments. They have a chair that they live in, usually in front of the TV, and everything is in reach. Except around this chair, the apartment was very sparse.'

March, 1999 (left): After recovering from his colon cancer, William S. developed a totally unrelated throat cancer. Radiation therapy helped briefly, but eventually he died at home. 'He had a sister,' Dr. Nowaczynski said, 'and for many years she lived nearby. Then, she moved to New Brunswick. She reappeared when he became ill again. He had no children, no girlfriends. He was a man of very few words, who spent all day in front of the History Channel.'

Ms. Blanche F., 84, August, 2000: 'She was a delightfully feisty, exuberant woman,' Dr. Nowaczynski said. 'She was born in a Newfoundland outport and moved west as a young woman and raised a family. Her arms here are crossed over a distended abdomen, and her legs are very swollen from advanced pelvic cancer. She lived in this place for many years, another seniors building with supportive housing, but she was very reluctant to accept any help. She did her own cooking up until very close to the end of her life.

'She had a son who lived in Hamilton, Ont., who visited and bought her groceries, but she was very typical of a lot of housebound patients, very fiercely independent. Eventually she collapsed and was unable to move her legs, unable to walk. She had been able to control the fluid retention for a while but eventually it just wasn't possible. She was admitted to hospital shortly before her death. She didn't want anything heroic done. She remained strong and cheerful, and enjoyed each and every day.'

Mr. Donald D., 79, January, 2002: Donald D. did not have supportive housing. He lived for years in a small apartment in the community, and in January was recovering from radical radiation therapy for head and neck cancer. 'I remember he wanted to stand up and be taken in profile,' Dr. Nowaczynski said. 'He said, "Doc, I want you to show them how thin I've become." '

'I don't know much about his family life. The photos on the wall include one of a wedding party, and he's standing to the right of the bride. There are also newspaper clippings of sports figures -- an odd assortment of private and public personages. He lived next door to my patient George W., an old army buddy, but his friend had died several years ago. Donald was very proud of the fact that he could walk three miles a day every day, despite the fact that he had artificial knees and artificial hips. When he was receiving treatment, he was very distressed that he was unable to go out. He is now hospitalized and awaiting long-term care placement. His apartment was cleaned out last month.'

Mr. George W., 76, May, 1998: A retired postman, George W. was in the artillery in Italy in the Second World War. 'His six years overseas were very traumatic to him,' Dr. Nowaczynski said. He suffered from emphysema and chronic bronchitis, heart disease, diabetes, prostate disease, peripheral vascular disease and chronic lower back pain. In this picture, he is injecting his insulin. He had cut back from four packs of cigarettes a day to two. On the table in front of him, there are puffers, pill bottles and a lit cigarette in the ashtray.' He died not long after.

'He was too embarrassed to be seen outside on his motorized scooter,' Dr. Nowaczynski said. 'He spent all day sitting in the corner of his one-bedroom apartment sipping tea and smoking and making frequent trips to the washroom that left him breathless. He was receiving some home care. Two years before his death, they were going to discontinue all his services because of budget cuts, and he called my office in tears.' The doctor took action, and George W.'s services were only partly cut. 'Perhaps four hours a week cut to two. A lot of people in his situation are receiving only one one-hour homemaking visit per week, basically for the purposes of bathing.'

Ms. Constance C., 91, January, 2002: Constance C. never married. She lives with her cat, Oscar, whom she affectionately calls 'my boyfriend.' She has a niece elsewhere who speaks to her on the phone, but no family support in Toronto. 'She's fortunate,' Dr. Nowaczynski said, 'in that her building superintendent keeps an eye out for her.' She is nearly blind, and describes going to the supermarket and how she copes by holding a can up to nearby shoppers and asking them, "Is this chicken soup?"

'She is one of those people who would have fallen through the cracks. Her home-care services were cut off because she wasn't deemed to need them urgently enough. When she was referred to me, she had fallen and broken a hip, been hospitalized and discharged. She has quite a severe heart disease and is physically very frail. But she says she is managing "just fine." I visit her about twice a month, and her condition is relatively stable. Like many of my patients, she would rather die than move to a nursing home.'

Ms. Vera R., 91, March, 2002: She lives in the same seniors building as Blanche F. did, and 'would definitely not be able to manage without supportive housing,' Dr. Nowaczynski said. 'She's extremely frail physically, but mentally she's a very bright and alert woman. She is very religious. She was born in England and immigrated at a very young age with her family. Her father was a First World War veteran, and she has a sister who's still living, but I don't know where. She has lived in this building since it opened, approximately 20 years ago. She never married, and, as with many of my patients, I don't know what she did before -- if she worked, she would have retired more than 25 years ago.'

Mr. Joseph D., 84, March, 2002: Joseph D. lives in East York, the only one of the subjects here not in walking distance of Dr. Nowaczynski's office -- he is the uncle of a close friend. 'He lives very happily in the same home he's been in since he was a young man. He bought that stove over 60 years ago. He takes care of his cats and putters around. He receives no home-care services, and manages with the help of neighbours and family, and does most of his own cooking. He never married -- he's a crusty old mariner who owned a small transportation business after he got out of the navy. He has no intention of moving anywhere, but having had a stroke, with Parkinson's and osteoarthritis, his biggest problem is that the washroom is one floor up. Getting up and down the stairs is the biggest impediment to his being able to stay there.'

Ms. Kathleen R., 80, November, 2000: A 'very delightful' retired woman who once worked with children. at the time of this photo, Kathleen R., seen here with her walker, lived alone in a one-bedroom condominium. She was able to afford some private home care and has a son who lived north of Toronto and came once a week to help. But she also has advanced Parkinson's, and eventually had to move into a private nursing home. She has been twice widowed. 'Her second husband died of Parkinson's disease,' Dr. Nowaczynski said, 'so it was very distressing to her to be going through what she saw him go through. She was very scared about what the future held for her.'


Dr. Mark Nowaczynski has devoted himself for the past four years to documenting his housebound patients'
solitary lives.

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