In 2002, a report by the Commission on the Future of Health Care in Canada headed by Roy Romanow described home care as the next essential service. The Canadian Home Care Association calls it a critical part of how we look after you. On any given day, more than 900,000 Canadians depend on home care. Our show on home care examined the challenges of trying to deliver cost effective service at a time of financial strain. Many of you wrote in to talk about personal experiences with home care.
Shirley Barr of Cornwall, Ontario sent this: "I have a friend who went through hernia surgery and was released the same day. There was no follow-up done to see how the wound was healing and in the following ten days he developed an abscess that has now required several rounds of antibiotics as well as daily trips to a clinic to have it cleaned and drained. It appears that someone in the system did not apply the right kind of bandage, and that may have been a contributing factor to the infection. I found this experience to be extremely frightening because it was totally preventable and unnecessary. When I compare it to the basic pilot training process I went through and the safeguards that are in place, I wonder why there isn't the will towards continual improvement that there is in the airline industry. Let me give you another example of better care. My cat had an abscess that developed on his back, I took him to the vet and he was given a 14-day antibiotic treatment. The vet clinic called me within 48 hours to see how he was doing. There was more care demonstrated towards a cat than my human friend. This is not right! If we are going to move towards paying based on outcomes rather than services, that should include immediate post-surgery follow up in order to prevent and respond to problems before they become life-threatening."
Helen Martin of Burnaby, BC writes: "Six years ago, my ankle crumbled under me and I was taken to a hospital where I received immediate surgery and excellent care. However, when I was released, I was told to arrange for home care and given the phone number. The office told me it didn't have the staff to visit and I would have to come to their clinic. I didn't have friends available to drive me and I couldn't walk up the two-block hill to the bus so I took a taxi at $15 per trip. I discussed the matter with the nurses and the upshot was that I was given all the materials needed to do the dressing changes and I did it myself at home. There was no infection but it took from the end of Sept. to the beginning of January before that wound healed and I could start physiotherapy. I don't imagine a visiting nurse would have made it heal faster, but I, too, was startled when home care didn't mean care at home. The problem of the patient's transportation is not a consideration and you should have seen the delight with which the clinic staff greeted my statement that I could certainly do the dressing change myself if that was all there was to it. Just don't call it home care."
We received this email from Mary Peregoodoff, a Community Health Worker in Home Support from Kelowna, BC, for 20 years. "Respect the people who receive the home care services, ask them about how valuable home care is in their lives. There is a very special relationship that happens with the people you look after, a very human experience that is beneficial to both the client and worker. This relationship is what makes the care provided at home something that cannot be duplicated elsewhere, or in another site. Yes some people who can get out safely can go to the home care clinics. There are other seniors who can't make it to an outside clinic quite so easily, and I would like to remind those powers that be, that they may become our clients in the future. My reward in this job is the sincere, loving whispers of THANK YOU we hear every day."
M. Gause of Parry Sound, Ontario thought we were only reporting on half the picture of modern-day home care. (Your show on home care) "was relentlessly urban in outlook without any serious discussion surrounding some of the proposed changes vis a vis the realities of central and northern Ontario. I understand the move to clinics by Community Care Access (CCAC). However, in central and northern Ontario, where there is often no public transportation at all. You might as well not have any services at all. People will just revert to going to hospital for services and ambulances at $800 a pop will be used for taxi service."
M. Parkes of Whitby, Ontario, sees the sense in delivering home care at outside clinics. "Before retiring, I worked in a bricks and mortar medical clinic. Much professional time was wasted due to clients failing to attend and not telephoning to cancel appointments. Solutions tried included reminder phone calls to clients a few days before the appointment; expanding the number of evening hours available for clients who could not take daytime from work, making staff peripatetic, traveling to home and school clients. The latter solution was very popular with most clients; however, due to the traveling time, staff could sometimes see only 4 clients in a day. Additionally, sometimes clients were not at home/school because some other commitment had come up. As a result, staff time was wasted. It is difficult to find a solution that both suits the clients and also maximizes the use of professional time. People who are considering a retirement location might be wise to consider that a remote rural location might find it difficult to provide home care in the home."
Health care policy expert Brian Golden's prescription to move home care from payment for services rendered to payment for results generated some vigorous debate from both sides.
Daniel Shapiro was against the idea of paying for home care on a "results" basis. He writes: "My mother, the late Evelyn Shapiro, often referred to as "the mother of Canadian home care," would have been appalled at the suggestion. Care must be provided on the basis of need, and sometimes the result is not measurable. Yes, one of the values of home care is that both economically and in quality of life it is preferable to stashing people requiring some care in institutions. On the other hand, since every case is different, how can we measure "results" by, say, how long the client is kept out of institutional care? Not only did my mother make it clear that justice means care on equal terms for all, but I am personally concerned with this issue, because my wife requires some home care, suffering from the effects of multiple sclerosis. Her prognosis is of a wholly unpredictable decline. Compare this to someone who is recuperating from an operation who needs home care temporarily, for a few months. A "results"-based assessment of home care comparing two such cases is ludicrous and empty. You mentioned that some people wish to measure medical results, too, by the curing of illnesses. My mother herself suffered a stroke, which ended her life, but not before she spent a week in palliative care at St. Boniface Hospital in Winnipeg. The point of the care there was not to cure her, as her condition was incurable. But the caring and highly competent staff there helped ease her last days, and suggesting that our health care system should not pay for that is startlingly unfeeling, nonsensical, and inhumane."
Daniel, you raise some important points. To clarify, with respect to Brian Golden's policy suggestions, he was referring to post-operative home care where the outcomes are more predictable and where the prognosis is generally considered good, not to palliative care. That said, it is possible to introduce outcome measures into palliative care. For instance, in palliative care, a good outcome might mean better pain control and quality of remaining days of life. In my opinion, outcome measures put some accountability into the delivery of health care.
Donna D. of Calgary sent us this insider's view of home care that gives some useful context to the issues. "I have worked in Palliative home care for the past 10 years. I see patients as complex at home as I used to care for in the ICU 20 years ago. While there are challenges, I have the pleasure of working in one of the best systems in Canada if not the world. I have however seen an increase in unnecessary complexity in home care and the system in general. This "complexity" costs time and money while complicating and taking time and energy away from patient care. Please note that I am not paid by the visit; I organize my time based on client needs. I do not need an MBA to know that keeping people at home (where they want to be) is cost effective and that changing how we do things annually (new rules, new organizational structures, new processes for simple working procedures) is not. I used to be able to choose from a variety of providers. Now, contracts are awarded and last for years. A whole level of administration has been created to manage these contracts. Services are often not filled and when they are, the continuity of care is poor. I feel for these workers and suspect they are in less than ideal working situations. The motivation for the contractors is simply to fill their obligations any way possible. Home care is the future. Let us support it, nurture it with wise policies and keep as much "in house" as possible in order to support both the workers and the patients."