Behind Closed Doors: The struggle over homecare
FROM MONDAY, MARCH 29, 1999
The Missing Piece of the Health Care PuzzleBACK TO HOMECARE
Learning What You Need to Give Care
Living with Dignity and Love When Death is Imminent
Photo Essay by Fred Lum
Behind Closed Doors: The struggle over homecare
The missing piece of the health-care puzzle
Allan Rock found out first-hand how hard it can be to find services. The
homecare system is catch as catch can, with no standards for quality and
no covering legislation
by Anne McIlroy and André Picard
Allan Rock
Ottawa -- When Anne Rock became terminally ill with breast cancer in the summer of 1994, she told her family she wanted to die in her Toronto home.
Her husband and four children respected the decision, but like many newly conscripted caregivers, they had no idea where to turn for help.
It didn't matter that Mrs. Rock's son, Allan, was the federal justice minister, one of the best-connected men in the country. He and his three sisters found themselves fruitlessly flipping to H in the Yellow Pages in search of homecare services. A local doctor steered the family to an agency, but it was unclear what the public system would pay for, what private insurance would cover and what the family would have to pay out of pocket.
Mrs. Rock died at home that fall. Shortly afterward, her husband Thomas, who had previously been diagnosed with prostate cancer, also became terminally ill. The family again went looking for care, only slightly more prepared. This time, Allan Rock, the only son, provided more of the hands-on care himself. His father died eight months after his mother.
It was obviously a very difficult period in the rookie politician's life, and one that is not easy for him to talk about. It left him convinced, like many who have experienced palliative care, that allowing his parents to die at home was the right thing to do.
It also provided the man who is now federal Health Minister with two very personal lessons about the joys and pitfalls of one of the most profound social changes of the century: moving health care back into the home. Mr. Rock tasted health reform up close and gained an acute understanding of the challenges faced by the three million Canadians who look after family members at home.
"It made it clear to me that homecare for the elderly, and indeed for anybody who's coming out of a hospital, is important," Mr. Rock said recently in an interview, the first time he has spoken publicly about his personal homecare experience, "and that it's unfair and unrealistic to expect families to take the whole of the burden.
"Obviously families want to do what they can, but they can't always do it all. But we have to make home- and community-care support an integral part of the health-care system.
"I don't think Canadians are asking the state to come in and take over, but I do think that you need a good framework of public support behind the loving family who are on the scene. And I think that's what's missing at the moment."
Fashioning that missing part of the health-care puzzle -- what many in the field call medicare's unfinished business -- has been a recurring theme for Mr. Rock since he became Health Minister in 1997. He speaks passionately about homecare and goes further than any politician ever has in touting its importance.
"Indeed, I go so far as to say that homecare is fundamental to saving medicare," he told a national conference on homecare last year.
Yet for most Canadians, homecare remains a confusing mishmash of poorly funded programs, with markedly different services available depending on where they live. And for most provinces, homecare is still a political and economic afterthought, not a guiding force.
Governments spend only 20 cents per capita per day on homecare. The variations from province to province are dramatic; for example, Quebec's per-capita spending is about one-third that of its neighbours Ontario and New Brunswick.
Homecare does not come within the scope of the Canada Health Act, which ensures equal access and public funding only for "medically necessary" services. So while professional services such as nursing and occupational therapy in the home are typically provided free of charge, user fees are charged for many homemaking services.
According to one Statistics Canada study, more than 839,000 seniors in Canada who need health-related care at home are not getting it. Another federal study found that 70 per cent of people who need help with activities of daily living have no publicly funded help. And those who turn to the open market find there are no standards for quality of care and no legislation to protect them.
Homecare is the only health program in Canada where means testing exists, and where portability is virtually non-existent. More provinces than not impose eligibility criteria before they will provide homecare to new residents -- much as they do for welfare.
A Canadian can walk into a hospital emergency room or a medical clinic anywhere in the country and expect high-quality care free of charge. But the same is not true of homecare. That journey is often likened to plunging into a black hole -- a trip on which you had better have your wallet at the ready.
"What we have today is two parallel health-care systems in this country," said Taylor Alexander, president of the Canadian Association for Community Care. "One is a very well designed, publicly funded system whose costs are well managed and in which the role of the private market was clearly delineated and controlled; and in the other, called the community-care system, it is catch as catch can, with . . . no coherent coverage of continuing-care services in the community."
Yet every government likes to brag that its homecare program is the best both in quality of care and cost-efficiency. "The provinces will all say they are doing fine, thank you very much, just give us more money," said Lesley Larsen, former executive director of the Canadian Home Care Association. "There is no effort to create standards, or even to define basic services so the public knows what to expect."
Homecare advocates are fed up with the gulf between political rhetoric and reality. "There is a sense of frustration that surrounds homecare today . . . knowing that homecare makes so much sense but is in such a state of disarray across our country," said Lynda Kushnir Pekrul, president of the Canadian Nurses Association.
The CNA advocates an accessible, publicly funded and publicly administered homecare system, and legislation that applies the principles of the Canada Health Act. But nothing of the sort is likely to be implemented any time soon.
It seems unlikely that federal and provincial politicians will even be able to agree on what minimum level of homecare service should be available to all Canadians.
In large part, the political problems of homecare are rooted in the difficult dynamic between Ottawa and the provinces on health care. The provincial governments, not Ottawa, are responsible for delivering health care to Canadians, for running hospitals and paying doctors. The federal government contributes funding through transfer payments and enforces the Health Act.
Since Ottawa began dramatically slashing health-care funding to the provinces in 1995, relations between the two levels of government on the issue have been difficult and at times poisonous. In part, this is because it was provincial governments that paid the political price for the hospital closings and long waiting lists that resulted from the cuts in transfer payments. They also argued that Ottawa's ability to provide leadership on health care had been eroded by the funding cuts.
So the reaction was strained in December of 1997 when Mr. Rock spoke to a meeting of the provincial premiers in Ottawa about new homecare spending. From the provincial point of view, here was the federal minister hoping to get credit for a new program when they were taking the hit for a system many Canadians feared was falling apart.
The provinces publicly described homecare as an unnecessary frill, a so-called boutique item, although some, such as Alberta and Manitoba, have relatively comprehensive homecare systems already in place.
"All provinces agreed that we don't need new programs in health care. We don't need more homecare," said Pat Binns, who was then PEI's premier, as he left the meeting. "What we need is a strengthening of our front-line services, our acute-care programs, and there was unanimity, including Quebec, on that point."
It was a message repeated again and again in the leadup to this year's federal budget. The provinces made it very clear that they did not want the federal government to force them to spend health-care money on homecare. What they wanted was their money back to spend as they saw fit.
That's exactly what they got. In February, the government announced an $11.5- billion increase over five years in transfer payments for health, restoring the money it had cut to fight the federal budget deficit. It will be up to the provinces to decide where to spend it, and several, including British Columbia and Ontario, have indicated that at least some of the money will go to homecare.
B.C. Health Minister Penny Priddy says many provinces are beginning to realize that good homecare is essential to fixing the other more visible problems in the health-care system.
"What happens is you have to have movement through a whole health-care system. You can't just have movement through a facility. If you don't have good homecare, you may need to go to a long-term-care bed. If you need to go to a long-term-care bed, those beds get filled up, which means the person in the hospital can't get a bed.
"I think people are only beginning to understand that you have to spend the money in homecare and long-term care to make a difference, for instance, in emergency-room backups. Before, people have seen them as separate, when indeed they aren't."
Many care providers, paid and unpaid, would agree wholeheartedly. But what leaves them baffled is why, if everyone seems to agree that homecare is a good investment, governments have been tentative and unco-ordinated in their efforts.
"The most difficult problem is one of definition," Mr. Rock said. "What is home and community care, what is public and what is not? And that's the toughest thing, because that's the key to cost.
"Homecare is defined by some people as cutting the grass or fixing the fence for someone who is frail and elderly. And yet others would restrict it to medical service. Yet by helping others in shopping and that sort of thing . . . you keep them healthier for longer because they're happier in their own environment. And you save the fortune of $100,000 a year in a long-term-care facility."
Defining homecare will also be the key to controlling costs, and to laying out what the health and social safety net will look like in years to come. "The question that homecare forces us to ask is: 'What level of care can the system support as a whole?' " said Ms. Larsen of the Home Care Association.
"We can't bankrupt the country by caring for everyone. But the least we can do is clearly define what care the system will provide so families know what is covered and what is not."
Mark Frankel, president of TakingCare, an elder-care referral service used by corporations for their employees, says Canadians have to recognize that no single sector of society can successfully address all the needs of elderly and disabled people.
"Not the family, not government, not the private sector, not the public or charitable sector. None of these institutions has the resources to do the job alone. Effective, humane, long-term care for the elderly and the disabled in Canada will only be achieved by a network of human services which takes the best from each of these sectors."
For example, publicly funded programs will have to be supplemented with the purchase of homecare insurance (which is already available); corporations will have to allow more flexible hours for caregivers; and charitable groups will have to fill in the gaps, just as they do elsewhere.
B.C.'s Ms. Priddy said determining what to cover, as demand soars, is a real dilemma, that there is a perpetual tug of war between meeting immediate needs of those with acute health problems and investing in preventive care.
"What's happening in every province, including mine, is that people say 'Okay, if this is the amount of money we have, we have to provide the care for people with the greatest medical needs.' What that means is the people who are being removed from homecare, maybe, are people who were getting help with vacuuming -- house care instead of medical care. Yet that means they would have been able to stay in their homes longer."
Transforming homecare from an afterthought into a priority will take standards, monitoring and political will.
It will also take money. Dr. Peter Coyte, a professor of health economics and co-director of the Home Care Evaluation and Research Centre at the University of Toronto, said it would take an immediate injection of $700-million (on top of the $2.1-billion already spent annually on homecare) to bring all the provinces up to par with Ontario's level of spending.
"And this is not to suggest Ontario has it right, this is just a question of dealing with inequities in allocation," he said.
For now, the system in each province is evolving, and not always in the same direction. There are medical models and social-welfare models; there are conflicting trends of unionization and privatization. And there is a growing consumer awareness that is driving change.
Given the current political context, it is unlikely that a national program will be created, or that standards will be established.
"But there's a backdoor way to achieving this -- comparative report cards," said Steven Lewis, chief executive of the Saskatchewan Health Services Utilization and Research Commission. "I can't see Saskatchewan and Ontario, for example, ever agreeing to a national set of rules, but if you provide the public with information, the variations will be narrowed very quickly."
Mr. Lewis -- who was a member of the National Forum on Health, a task force that called for a universal, publicly funded homecare system as essential to maintaining equality of health services -- said this is a very exciting time for homecare, likening it to the days just before medicare was created in Saskatchewan in 1962. As yet, "we don't know what homecare is going to look like, but it has the potential to be spectacular."
Clearly, homecare will be on the political agenda for many years to come, in part because of demographic changes. Statistics show that more people are now dying of chronic illnesses than acute ones, and that an aging population will put an increasing strain on a health-care system that already costs $80-billion a year.
It will be a problem that falls on the shoulders of baby boomers like Mr. Rock. His grandparents died in hospital, but his parents wanted to die at home. For his mother in particular, he is convinced that it made her passing more peaceful. "That's where she wanted to be, and it was worth all the effort and whatever money it cost."
Will the same be true when Mr. Rock's time comes? It is a question that most Canadians will eventually have to ask themselves, a question to which answers are already being forged at cabinet tables and kitchen tables alike.
Behind Closed Doors: The struggle over homecare
Learning what you need to give care
by André Picard
Vancouver -- About four years ago, Lucille Johnstone broke her leg, and the break was so nasty that she had to use a wheelchair to get around.
While her children were keen to help, she soon realized that they didn't have the slightest idea how to do it. Worse yet, there was nowhere for them to turn to learn the skills that caregivers need every day: helping a loved one in and out of a wheelchair, lifting a mobility-impaired adult into an apartment-sized bath, changing the sheets of someone who is bedridden, changing the continence pads of an unco-operative adult.
That experience convinced Ms. Johnstone that there was a crying need for caregiver training. And, as executive director of St. John Ambulance - B.C. and Yukon, she was in a position to ensure that such a program could be created.
Today, the Help for Homecare program is still in the trial stage. But demographic and practical realities could soon make homecare training as ubiquitous as St. John first-aid training.
"Personally, I think that every senior citizen -- and a lot of their children -- should plan to do this program because chances are they're going to end up caring for someone in their home in the near future," Ms. Johnstone said.
And, at 75, "I'm not going to hide that I've got a personal interest in this thing, because I'm going to need some help myself."
While feedback on the program has been tremendous, the biggest impediment has been the fee of $40. The agency has been trying to find a sponsor to cut the cost.
"People seem willing to spend money to go to a lawyer to write a will, but they're reluctant to spend a little bit to get prepared," Ms. Johnstone said.
During the eight-hour Help for Homecare course, students learn skills such as positioning and transferring care receivers, feeding and toileting, dealing with falls and emergencies, comfort care, and how to cope with challenging behaviour common in people with dementia. They also learn to handle equipment and aids that are common in homecare situations such as wheelchairs, walkers, feeding aids, bedpans and commodes.
The course is taught by veteran homecare nurses.
"People are well intentioned, but what we want to give them is the capability to care," Ms. Johnstone said. "I think we owe that to the people we care for."
Behind Closed Doors: The struggle over homecare
Living with dignity and love when death is imminent
Social and spiritual support become as important as medical needs
by André Picard
Regina -- This year, eight-year-old Annie Cottrell drew a Valentine's Day card for her dad on a balloon. She watched intently as the message of love floated high, high in the sky.
Annie's dad, Tony, died on Oct. 23. Preparing and launching the Valentine's balloon was an important part of her grieving. It was also an outgrowth of the homecare services the family received from the Regina Health District.
Mr. Cottrell, a 40-year-old editor at CBC Television, had a rare form of brain cancer. One of the first decisions he made after being diagnosed with the untreatable disease was to die at home.
It is a choice more Canadians are making each day. Long gone are the days when you went to hospital to die; in most communities with a palliative program, well over half of those at the end stage of life choose the home setting.
"Hospitals are for sick people, they're not necessarily for people who are dying," said Velda Clark, head of the palliative-care program at the Regina Health District.
The focus of palliative care is not on dying, but on helping people live fully for the time they have left. "We cannot change that you will die, but we can change how you die and how your loved ones cope," Ms. Clark said.
Palliative care is, in many ways, a microcosm of the continuum of care that policymakers are trying to create across the health-care system. It also reflects most pointedly the philosophical shift taking place, toward the view that health care consists of a lot more than treating specific diseases.
Good palliative-care programs treat medical, social and spiritual needs just about equally. And providers (unpaid caregivers, volunteers and professionals alike) care not only for the physical needs of dying patients, but for the emotional needs of their spouses, children, lovers, parents and friends. It is also one of the few mainstream health programs that take a holistic approach.
When Mr. Cottrell realized he did not have long to live, he was provided with state-of-the-art medical care, but the care team also made sure that it offered anticipatory grief counselling to the family, and continued follow-up services after the death.
"You know, it wasn't horrible. It would have been horrible in the hospital," said Adrienne Cottrell, his widow. "They made us feel like we were part of Tony's care; we didn't feel hopeless or helpless."
Mr. Cottrell's bed was moved into the living room, the sunniest room and the hub of activity in the home. He wanted to experience the richness of family life, even when he grew weak and his mobility was limited.
"The smell of your coffee, your daughter kissing you goodbye before catching the school bus . . . those are the parts of your life that you hang on to when you have palliative care at home. You can't put a price on that," Ms. Cottrell said.
In Regina last year, palliative-care patients ranged in age from 4 to 92. Those who have the most difficult time dealing with death, Ms. Clark said, are the families of middle-aged professionals, particularly those with young children.
While Mr. Cottrell was being cared for by nurses, physicians and attendants, the greatest help for his daughter Annie came from a music therapist. Not only did the music brighten the atmosphere, but the young girl wrote love songs for her dad, and her mom.
"Music allows people to express themselves in a way they cannot always with spoken words," said music therapist Marlene Jackson. "In palliative care, it's the extra little things that make the experience special."
Ms. Jackson said that many people regard the service (and others of the same nature) as a frill, but they are an integral part of treatment. Music, for example, helps with pain therapy, and the reminiscences it provokes allow closure.
Ms. Cottrell said home palliative care is not a choice everyone will be comfortable with, emotionally or financially. (Her husband's disability insurance allowed the hiring of a full-time nurse at $5,000 a month, her mother moved in to help, and her employer allowed her a generous leave.)
What she would like to see, however, is changes made, particularly to labour laws, so that all families who choose to can opt for palliative care without suffering financially. Workers now have guarantees of maternity and paternity leave in most provinces, but "eternity leave" that would allow collection of unemployment benefits and provide some job guarantees to those doing intensive caregiving or palliative care are virtually non-existent.
"If governments are going to promote homecare, they have to provide supports like protection for workers," Ms. Cottrell said. "The palliative experience radically changed my view of what health care is, and I think that's true of everyone who goes through it.
"The medical system is cold and alienating, but this was something else entirely: This is what health care should be, caring for a person's physical needs, their emotional needs and those of their family."
Photo Essay by Fred LumHOMECARE