JACKIE ARCHIBALD
COLLEEN ROTH
ISABELLE BATES
CONTENTS
Monday 11 April 1994
Dialysis treatment services
Ministry of Health
Hon Ruth Grier, minister
Paul Wessenger, parliamentary assistant to the minister
David Mendelssohn
Jackie Archibald; Colleen Roth; Isabelle Bates
Ted Toffelmire
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
*Chair / Président: Beer, Charles (York-Mackenzie L)
*Vice-Chair / Vice-Président: Eddy, Ron (Brant-Haldimand L)
*Carter, Jenny (Peterborough ND)
*Cunningham, Dianne (London North/-Nord PC)
Hope, Randy R. (Chatham-Kent ND)
*Martin, Tony (Sault Ste Marie ND)
McGuinty, Dalton (Ottawa South/-Sud L)
*O'Connor, Larry (Durham-York ND)
*O'Neill, Yvonne (Ottawa-Rideau L)
Owens, Stephen (Scarborough Centre ND)
*Rizzo, Tony (Oakwood ND)
*Wilson, Jim (Simcoe West/-Ouest PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Haslam, Karen (Perth ND) for Mr Hope
Sullivan, Barbara (Halton Centre L) for Mr McGuinty
Wessenger, Paul (Simcoe Centre ND) for Mr Owens
Clerk / Greffier: Arnott, Doug
Staff / Personnel:
Boucher, Joanne, research officer, Legislative Research Service
Gardner, Dr Bob, assistant director, Legislative Research Service
The committee met at 1531 in room 151.
DIALYSIS TREATMENT SERVICES
Consideration of a matter designated pursuant to standing order 125 relating to dialysis treatment services.
The Chair (Mr Charles Beer): Good afternoon, ladies and gentlemen. Welcome to this meeting of the standing committee on social development. We are here today under standing order 125 regarding a designated matter, which in this case refers to dialysis treatment services. The direction the committee has been given is the following:
"That the committee meet for a period of 12 hours to review the commitment and level of priority that the Ontario government is placing upon dialysis treatment services in the province of Ontario in light of the growing crisis that is overwhelming dialysis patient care in the province."
This standing order 125 was moved by Mr Wilson and I would first ask Mr Wilson for any opening comments.
Mr Jim Wilson (Simcoe West): Thank you very much, Mr Chairman, and thank you, Minister, for attending. The need, obviously, for haemodialysis treatments in this province has for some time now been at a crisis level. I want to begin, with the committee's indulgence, by reading a letter that was sent to the minister, the Honourable Ruth Grier, dated January 16 of this year, from Dr Janet M. Roscoe, who's the chairperson of the Toronto Dialysis Committee, and it was cosigned by one of our presenters, in fact the first presenter today, Dr David Mendelssohn, who's vice-chairperson of the Toronto Dialysis Committee, because I think it outlines the situation currently in the province. It says:
"Dear Minister:
"You have received many letters attesting to the crisis in availability in dialysis facilities. This situation has now become even more catastrophic. An emergency dialysis roster was established approximately one year ago to accept emergent dialysis patients in an equitable way into existing dialysis programs. This system has been breaking down since Christmas because of the serious overcrowding in the existing units, as well as a lack of ICU beds. In the last three weeks there have been several near tragedies, the details of which I will be pleased to share with you if necessary. All programs are now saturated to a dangerous level. This is not a time for politics, putdowns or procrastination. It is imperative that the Ministry of Health respond with an immediate short-term solution. The opening of the Sussex Centre in March is both too late and inadequate to address the problem.
"The Toronto Dialysis Committee suggests that the most `doable' short-term response is to:
"(1) Immediately expand (with full funding) the haemodialysis program at the Sunnybrook hospital to 15 stations working three shifts per day, six days per week.
"(2) Immediately expand the chronic care/rehabilitation dialysis program at Riverdale Hospital to six haemodialysis stations and six CAPD patients." CAPD is continuous ambulatory peritoneal dialysis.
"(3) Immediately provide funding to each existing home dialysis program to expand its program by at least 10% capacity.
"(4) Immediately provide nursing salaries for haemodialysis nurses to allow the establishment of long-needed satellite units in Alliston and Collingwood.
"Even these solutions will not be possible to execute without a time lag in the case of haemodialysis of at least two months. Home CAPD in most cases will be able to expand more quickly but will not be suitable for all patients and of course cannot be used in acute cases. Toronto nephrologists anticipate that patients needing dialysis in the next week may require transfer to other centres such as Kingston. Of course patients who are in extremely critical condition may die before such transfer can be accomplished. We will document all cases requiring transfer or who die as a result of the shortage of facilities (which have been brought to your attention on many previous occasions).
"Toronto nephrologists are aware of the pressing economic problems facing the government. We are very willing to participate in a planning process looking at options for future delivery of care which might reduce the cost per case of renal failure to the government. This however is a process which will require considerable time and cannot address the urgent current needs. Nevertheless we realize the government does have some funds and must prioritize them."
In addition to this letter, which I think quite well sets out the situation in the province, and Dr David Mendelssohn may want to update us on the situation, the House debated this issue and on December 9 passed a resolution standing in my name, calling upon the government to establish haemodialysis satellites in Collingwood and Alliston, or what's now termed the town of New Tecumseth.
Very briefly, one of the issues that's been very difficult to explain in 15 seconds or less on news clips about this issue is the current response of the government. Certainly, Minister, your response to my questions in the House has been, "Yes, we see it as a serious situation and we're trying to do something about it," and the response given by government members in the Legislature on December 9 when debating my resolution also went along the lines that the government has launched a central Ontario or central-east dialysis study.
I just want to say for the record that you announced the funding of $100,000 for that study in October and November of last year and we were told at that time that the study would take six months. The last time I asked you a question in the House, some two weeks ago, that very day was going to be the first full-fledged meeting of that study committee. So the study that was supposed to be done by now is just getting started and I'll be interested to hear your comments with respect to that.
Secondly, the response outside of Metropolitan Toronto, in particular of my area in Simcoe county, and it's been from the Toronto hospitals, where our patients are attached, has been that if you are serious enough and can no longer drive the great distances to either Toronto or Orillia, then you can get a haemodialysis machine in your home. Part of my resolution dealt with the economics and what I think is a commonsense solution to the haemodialysis crisis in this province. That is to establish dialysis satellites, because currently, for example, members should know that we have three machines in the Alliston or New Tecumseth area serving only three patients, yet as far as we can tell, we're up to about a dozen additional patients in that area who continue to have to drive.
It's very, very difficult to explain to people that while there are three machines in town, only three people can use those machines in their homes. The commonsense question I'm asked is: "How come I can't use my neighbour's machine? Why don't we put it in a central location and share the machine? Why do I have to continue" -- particularly during the wintertime, and you'll hear from patients this week who have to drive, often under treacherous road conditions, to Toronto, about what this is doing to their quality of life. In fact, you will hear that they have no quality of life, that many patients, on the days they don't have to travel to Toronto, spend those days staring out the front windows of their houses, wondering if the weather's going to be good enough, if they can get to Toronto. Members have to know that you have to have haemodialysis. There is no option. Our constituents have to drive here three days a week, regardless of weather conditions, or they die. There is no option.
Secondly, it's the exact same situation in Collingwood, where there are three machines in town; there are two in Collingwood and one in Thornbury, which is near Collingwood, or actually between Collingwood and Thornbury in the rural area. Again, particularly in Collingwood -- I have one patient by the name of Mr Mackenzie. In fact, he and his brother both are dialysis patients. They literally live within blocks of one of those machines and they asked me, "Why can't I use Mr Udall's machine?" and Mr Udall says: "Why can't they use my machine? I've got one in my home. Why can't it be centrally located so that all the patients in town can use that machine?" Minister, I'd be very interested in your responses to those very specific situations.
The motion before us now has been put in a more general sense so that we can examine the dialysis crisis across the province, to give all members of this committee and indeed all members of the Legislature the opportunity to bring forward the situations in their ridings.
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Just very briefly, I don't want and didn't want, at the beginning of this process, to blame this government or to blame governments, but it has become an issue that is starting to be partisan because of what I perceive and what patients perceive and I think as nephrologists perceive -- certainly Dr Mendelssohn and Dr Roscoe have stated there's a lot of foot-dragging going on and there doesn't seem to have been a response really at all from the government.
The government will claim that it expanded Orillia in Simcoe county. That filled up just as soon as it was expanded. When that was done, although it was done with the agreement of the district health council, people must have had their heads in the sand if they expected patients in Alliston to drive to Orillia, which is farther than driving to Wellesley Hospital in Toronto. In fact, the roads are better plowed in the wintertime down to Wellesley Hospital than they are to Orillia. So the whole situation the way it stands now defies common sense.
We've tried not to make it a political issue, but upon hearing that the study committee had only just begun its studying of the issue, I and patients became very discouraged.
I will leave it at that and allow the minister to respond and to make her comments.
The Chair: Minister, on behalf of the committee, welcome to the committee. We're very pleased that you were able to make some time to be with us today. With that, I'll let you make your opening comments.
MINISTRY OF HEALTH
Hon Ruth Grier (Minister of Health): I'm very glad that the committee is holding hearings into what is certainly for the ministry a top priority. I'm delighted to have the opportunity to come and make some opening comments.
My two parliamentary assistants, Mr Wessenger and Mr O'Connor, are also here and will be part of the committee. In addition, from the ministry Mr Donald Walker and Miss Monita O'Connor are here and will be here throughout the hearings. So I suspect you will get into the kind of specific questions Mr Wilson has posed with respect to discussion and dialogue as the hearings proceed.
What I thought I would like to do is to make some general comments and provide the committee with some background as to the actions the ministry had in fact taken in recent years, because providing services for people with kidney disease poses both a tremendous challenge to the health care system and I think an opportunity to look at how we can expand services, as well as make them more appropriately placed for people in the province because we know that travelling long distances, as has traditionally been the response to this problem, is not what the people and the patients most prefer.
While dialysis treatment meets some of the challenges that are out there, we recognize and know that there is a tremendous need for organ donations, as well as for home care and family support services as well as greater emphasis on prevention through our treatment and acknowledgement of the problem caused by diabetes.
The latest figures show that there are over 5,600 men and women in Ontario with end-stage renal disease. Almost half of them are doing well with a kidney transplant, about one third are getting haemodialysis in hospital or at an outpatient facility and the rest are on peritoneal dialysis.
The number of end-stage kidney disease patients continues to climb by about 10% each year, or about 10 new patients a week, primarily because of the complications from diabetes, but also of course because of the aging of our population and the higher percentage of the population that is elderly.
Obviously, the financial implications of this kind of growth are staggering. Dialysis treatment costs between $25,000 and $55,000 a year for each patient, and that doesn't include the cost if they need to be in hospital. While that's merely the financial cost, the human dimension to the patients and to their families is as much a reality as are the facts and figures.
I was interested to realize that dialysis has really only been around in its perfected form for about 20 years. It's become one of those miracles of medicine that we easily take for granted if you don't have to rely on it, but for those who do have to rely on dialysis, there's the stark reality that without it, as Mr Wilson has said, people have days, or at the most weeks, to live.
Also at issue is the quality of the patient's life once in treatment. That's where the prime demand is for treatment of kidney disease through dialysis within a reasonable distance of home, because of course Mr Wilson is correct in the pressures and the problems that are faced by travelling. As well, people want treatment schedules that make the dialysis available to them when they're feeling well. They shouldn't have to wait until symptoms appear before receiving it.
It's a combination of all of these factors -- both the increasing number of patients, the high cost of treatment and the need to provide appropriate dialysis treatment to patients across the province -- that is putting incredible pressure on the entire system. In particular, there's been pressure on the front lines -- I know in your hearings you will hear from some of the people on the front lines -- on the hospitals, on the physicians and the other health care workers who are trying to meet the demand as well as manage the cost of this very specialized therapy.
That's why planning for the future is the key. I was glad that Mr Wilson acknowledged the need to do that, because we need planning that looks not only at the immediate needs but also into the future and takes it into account. Of course, we believe that this planning has to involve representatives from all areas of the health care system: the doctors, the nurses, the patients and health planners from individual communities, as well as the ministry.
I'm distressed when I hear that perhaps Orillia was not the appropriate place to do the expansion, because that kind of a recommendation comes from the district health council, because of our belief that planning is best done if it is done in a decentralized way, with the district health councils being the bodies that make the recommendations with respect to the needs and how best to meet those needs within their various areas.
I think it's worth reflecting on the progress that we have made in some other areas of health care, because it wasn't very long ago that the health system faced a significant problem of waiting lists for people needing cardiac surgery. I'm delighted to be able to say that this is no longer the case. Just last week we discussed in the Legislature the study that had been released by the provincial adult cardiac care network that shows that Ontario is now a leader in cardiac care.
Compared to the late 1980s, cardiac resources are now being used more efficiently and priority is being given to the patients requiring urgent treatment. So the average waiting period for cardiac surgery has decreased tremendously. In fact, the study shows that it now stands at just over a month. That's a turnaround that didn't happen by accident or all by itself; it's the result of careful planning that involved individuals from throughout the cardiac treatment system.
So I think the message from this is very clear: It is that if planning can make such a dramatic difference to the state of cardiac care in Ontario, surely we ought to be able to plan in the same way to deal with people with kidney disease.
We've already identified three key areas where the kidney disease treatment system needs attention.
First, we need more specific data collection, tracking such things as the number of people who are in the early stages of kidney disease and do not yet need dialysis. That's the kind of data that can help us to better plan for future needs.
Second, we believe we must work with doctors and other health care workers to come up with some guidelines concerning dialysis treatment. For example, when's the most appropriate time to begin dialysis? What's the most appropriate type of treatment -- haemodialysis or peritoneal dialysis -- based on the condition and the needs of each patient?
Third, we have to work -- again, with the profession -- to come up with guidelines for pre-dialysis care: things that could include information on diet, on blood pressure and medication, the things that we know can slow the progression of kidney disease.
These are all the kinds of issues that can be incorporated into a comprehensive planning strategy for treating kidney disease. That kind of planning has already begun, and we're beginning to reap the benefits.
The three-phase, $22-million expansion program that we've just completed greatly expands our dialysis services. The aim of that was to bring the service as close to home for as many kidney patients as possible. In addition to the program's basic funding of $22 million, we added another $27 million of life-support funding to hospital operating budgets for end-stage kidney disease services, and $10.6 million have been spent on new equipment and renovation projects.
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At the end of 1988, before the expansion started, there were 2,073 dialysis patients. In December of last year, the number had risen to about 3,339 patients. That's an increase of 1,266. But after all of this additional spending on dialysis services, we can now treat 1,400 more patients than we could five years ago, which means that we're actually staying marginally ahead of the growth in patient numbers. So we're at a stage when we have more dialysis services available and accessible than ever before. That does not mean, as I've said, that we don't need to plan for a greater expansion in the future.
The expansion program that has been completed had two main objectives, and both of those were also met. The first objective was to improve access in remote communities, so we created 12 satellite treatment facilities, mostly in northern Ontario. The second objective was to meet the demand for increased services in urban areas, which is why we opened the new treatment centres in such places as Orillia, Mississauga and Oshawa.
Some other innovative approaches to community-based dialysis care have also come about because of the expansion. I suspect some of your presenters will talk more about that during those hearings. In January, for example, a new dialysis management clinic opened in Markham. This is the first OHIP-funded privately operated clinic of its kind in the province and can provide 36 dialysis treatments each week.
As you can see, we have made some substantial progress in spite of such challenges as the increasing number of people with kidney disease. But as I've said, the work isn't finished and there are still a number of problem areas, especially in the greater Toronto area. That's why we've been focusing our attention on this particular part of the province. We recently provided $100,000 to the six district health councils in the central region to conduct a comprehensive review of the need for dialysis. I expect to have that report by the end of this summer. I also expect the report to make recommendations in a number of critical areas, including how to meet the increasing demand for dialysis services, how to improve geographic access to services and how we can ensure that existing resources are being used as efficiently and effectively as possible.
Between now and the completion of this review, the ministry will continue to work with existing facilities to make sure that adequate services are always available to dialysis patients. The results of this new stage of planning, combined with those of the three-year expansion program, we believe will greatly improve treatment options for kidney patients throughout Ontario.
As I said at the beginning, while dialysis treatment is critically important, it's only part of the challenge of kidney disease, because another important challenge is prevention through the promotion of healthy lifestyles. On the prevention front, we've introduced programs which raise awareness about diabetes and the steps that can be taken to reduce its incidence. In northern Ontario, we already have one such program that targets aboriginal people, who tend to have a much higher rate of diabetes than the general population, and we're setting up a program for aboriginal people in the south. Other public education campaigns are aimed at curbing kidney disease and focus on such life factors as nutrition and cardiovascular health, especially hypertension.
For people who already have kidney disease, however, the best option is a transplant. Transplants can lengthen life. In addition, transplants can save the system a great deal of money. They cost between $40,000 and $45,000 or the same as, in some cases, one year of haemodialysis. But transplants can't happen without the donation of organs. That's why we provide $1.5 million in annual funding to the multiple organ retrieval and exchange program to promote organ donation and to coordinate the transplant system.
MORE puts together awareness programs for families and health professionals and operates a computerized registry to match potential donors and recipients. It also organizes Organ Donor Awareness Week, which starts on April 17. Regrettably, we do not have sufficient donations of organs to meet the need in the province. I hope that all members of the Legislature will use Organ Donor Awareness Week as an opportunity to do some work in our constituencies to spread the word about the need for more donations.
I believe that all of these efforts mean that we'll be better able to provide for the needs of people with kidney disease. It will take time to create the perfect system, but I think it's clear we're on the right track, and I hope as these hearings proceed you will hear some support for what we're doing and some constructive advice as to how we can improve.
Our overall strategy for the Ontario health care system is to ensure that services are appropriate, affordable and sustainable. To help achieve this, we're looking to communities, listening to them to find out what their needs are and involving them as full partners in the planning process.
We believe that the people of Ontario deserve the very best in health care, and that includes the increasing number of people suffering from kidney disease.
It's certainly my hope that, as in the case of cardiac care, we can deal effectively with the service problems dialysis patients have faced, and I hope that in a few years we'll be reading another report that identifies Ontario as a leader in preventing kidney disease and, when necessary, treating people who have it.
That's our goal, and I very much welcome the opportunity provided by these hearings to have some comments on that goal: how well we're meeting it, by how much we're missing it and, as I've said, some constructive suggestions as to how we can plan better in the future and how we can help communities to do that planning, because we remain firmly convinced that working with the district health councils, with the consumers and with all the participants in the system is the way in which we have to ensure that our planning produces solutions that are effectable, affordable and sustainable.
I thank you very much for this opportunity to participate briefly. I will, from my own staff who are here, be receiving reports of the hearings, and I will look for your conclusions with interest.
The Chair: I'd like to give Ms Sullivan an opportunity to comment briefly and then, would you have time for one or two questions? I know you have to go off to another meeting.
Hon Mrs Grier: I'm afraid I have to be at policy and priorities board by 4, so I only have a moment or two, but perhaps I could hear Ms Sullivan's opening remarks. I promise you I will read them in Hansard tomorrow.
Mrs Barbara Sullivan (Halton Centre): We all know there is not only a crisis in access to dialysis in Toronto, but there's a growing crisis and a disparity in equity of access to dialysis across the province; that the most rapid increase in rates is among those people who are over 65 with vascular disease or diabetes, and indeed that's also a growing part of the population. Therefore, when we're looking at this issue and comparing the demographics of the disease, we have to understand that this is not a crisis that is going to go away quickly, that it will continue and had better be planned for in terms of not only today but for tomorrow.
I believe we are seeing a rationing of services without having had a public discussion with respect to the rationing of those services, without determining the nature of where or how the rationing should occur.
I also believe that because of the current situation we're indeed spending far more money than we ought to. We know, by example, that in Toronto patients may spend up to two and a half months in hospital because outpatient facilities don't exist. We know that in October 1993, I believe, Dr Mendelssohn reported that in Toronto there were 13 patients who couldn't be discharged from hospitals because they had to stay in while they were waiting for a cancellation to get on to a dialysis machine. We also know that the kind of stopgap announcements that have been made -- by example, around the same time, when the minister indicated that the transfer of funds from the Sussex Centre would relieve some of the stress in Toronto, that was a very temporary, short-term situation. In fact, I would be very interested in knowing if any of the money was transferred. The Sussex Centre was supposed to open in 1993, didn't, and therefore the money was clearly on the books. In other words, there was no new commitment to facilities.
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One of the things that concerns me, however, is that if there is not a full, complete strategic approach to end-stage renal management, we will never reach the point where we are providing full, fair, appropriate and effective care to people across Ontario. The evidence has been available for years that a full, comprehensive strategy is required, a full, comprehensive program is required, and it is not only the fault of this government but of previous governments that this has not been put into place.
Dialysis is only one aspect of the problem. We certainly know that transplantation is far more cost-effective and perhaps has, in many cases, more of an outcome benefit to patients. The entire issue of organ donor encouragement has to be dealt with. I have not seen the current government or previous governments come to terms with dealing in a public manner, through public discussions, with some of the kinds of presumed-consent or other consent initiatives that perhaps ought to be looked at in Ontario.
We have added to the witness list for this committee many people who will not only discuss the dialysis issue, but who will put the whole question of end-stage renal disease into a context of a comprehensive strategic program and policy. In the meantime, we see an awful lot of dragging of the heels. The minister indicated with respect to dialysis that a committee would be set up to discuss some of the issues. I've been told as recently as March 29 by Dr Roscoe that the committee which the minister referred to in the House following one of our questions has met on only one occasion, and that was on March 22. It was a 16-member steering committee with no nephrologist representation. You can't deal with the issue unless you've got the players at the table.
Those are some of the things we want to explore as the hearings move along.
The Chair: Before turning to our witnesses who are here today, I would note that the ministry has circulated a document called Ontario Renal Disease Planning and Services; that is background information for committee members.
DAVID MENDELSSOHN
The Chair: We will begin with our first witness, Dr David Mendelssohn, a nephrologist at the Toronto Hospital. Dr Mendelssohn, if you'd be good enough to come forward, welcome to the committee. Help yourself to some good Queen's Park water. Once you're settled, please go ahead. I take it the slides are yours. Mr Wilson will operate the lights at the back.
Dr David Mendelssohn: Thank you very much for inviting me to be here today. I'm very glad to have the opportunity to share my expertise in the area.
I've been mainly involved in the Metropolitan Toronto problem -- I work across the street at the Toronto Hospital -- and my comments will be mainly around the issues related to Metro Toronto. Let me add at the outset that the problems I will discuss in Metro Toronto are perhaps more severe, but similar pressures are faced in other areas of the province as well, and I believe most of what I say is generalizable.
I also want to say at the outset that I'm glad to hear the minister acknowledge that there is a problem. Once a problem is acknowledged, I think it's fairly easy to get talented people in a room together to get answers and solutions, and I hope that's where we're going.
This is what I call the dialysis dilemma. It's a problem facing governments who fund dialysis all over the world, that is, that somehow society has to come up with a way to provide access to dialysis and quality of dialysis, while the anchor dragging the whole system down is the cost of dialysis. In Canada and in Ontario, once people are on dialysis, quality is at a very high level. The problem is with access, getting into the system.
In the United States, they face a different problem. You may not know, but the US government in 1972 decided to fund dialysis for everyone who needs it there, so it's one of the only diseases that can be compared fairly directly to the way we provide medical care in Canada. They've also had incredible growth, and they've struggled by decreasing quality but maintaining access. So they don't have a perfect system either, and both governments in both parts of North America are struggling with this.
We've already heard some cost estimates, so let's deal with that first. This slide shows the cost of dialysis. As was explained before, this does not include any in-hospital costs or any physician fees. You can see that the cost of centre haemodialysis approaches $50,000 per patient per year, and the bulk of the cost is labour. The rest of the costs are fairly fixed. You will probably hear some alternatives to providing dialysis at a less costly rate, but it's very difficult to see where substantial savings could accrue. Certainly some savings are possible, but I'm not sure where dialysis can be made a lot cheaper.
Home dialysis, as you can see, is quite a lot cheaper, mainly because you've eliminated a lot of the labour costs. However, with home peritoneal dialysis, it's the supply costs that are now substantial. The supplies are delivered to the patient's home.
This is the growth of the dialysis population in Toronto region. Toronto region stretches from Orillia in the north to the Credit River Valley in the west and to Oshawa in the east. You can see that the number of patients grows steadily and very, very predictably, averaging about 10% per year. We were up to 15% in 1992, and it's projected to continue to increase. We also heard today already that this is a young science and that this is the reason behind it. In other words, in the 1960s and early 1970s, only young and healthy patients were referred. Criteria were liberalized and the technology improved so that now we accept gladly diabetic patients and elderly patients, and we're just starting to catch up with the real need out there. So it's very easy to make projections of what is needed beyond 1993.
Since we began tracking this statistic in 1991, we've been calculating basically what we've been budgeted to provide with what is actually given in haemodialysis in the Toronto hospitals. This is a composite figure showing that in Toronto all adult hospitals since 1991 have been operating at more than 100% of capacity, and it's slowly getting worse. The theoretical standard is 85%; a haemodialysis unit should not be full. You have to be able to accommodate work schedules, acute renal failure, unexpected referrals. All sorts of things crop up, and you have to have flexibility.
What this means is that, for example, in my hospital this morning we had a list of about six patients whose dialysis treatment had to be changed and postponed because we had more pressing emergencies to deal with. That's playing a very dangerous game of brinkmanship. If you postpone the patient, the patient may be okay, but they may not be okay. We've started to see complications arising on a fairly regular basis because we've postponed somebody's treatment for 24 hours.
Because of this very, very predictable growth, it should be easy to make plans and to have working groups dealing with the problem and bringing facilities on line as the need is there. You can see that this is basically haemodialysis patients, 1992 actual and projected beyond that, assuming 9.8% annual growth per year. We also know that you need one haemodialysis station to serve basically five patients or so. In the region right now we already have the most patients on peritoneal dialysis compared to anywhere in the world with similar demographics, similar wealth and similar population. We already have more patients on home dialysis methods than anywhere else.
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Despite that, roughly half the patients are going to need haemodialysis, and you can draw a graph predicting that the red line should really continue to increase as well, but in fact there has been no haemodialysis expansion planned for 1994 or beyond. We heard about the Sussex Centre. That came on line March 1. That's included in the 1993 statistics because that's where it was supposed to go, and there is no additional growth for 1994 or beyond.
It's easy to see that this gap between the growth and what's been given will continue to grow unless there are both short-term solutions and long-term solutions. I'm all for central-east planning committee and long-term solutions; I'm very concerned about what we're supposed to do in the short term with the problem we now face.
At some point it becomes a fairly philosophical issue. In other words, what is the appropriate level of treatment in a country like Canada? Here is a graph basically of wealth along this axis and the number of patients being treated for end-stage renal disease. There were 35 countries on this graph originally, and I've simplified it only to show you that the United States and Japan are the leaders in terms of generosity, providing for everybody who needs this technology.
Canada does similarly to a lot of other western nations, and in the Third World, of course, people with end-stage renal disease just die. For example, in Russia less than 1% of the patients who need this actually get it. You can see that in Canada we do reasonably well, but we still, for our wealth, don't do as well as perhaps we should do. For example, Israel, which is a poorer society, actually treats more patients than we do.
You can see that this gap between what we do and what is done in the United States means that even 10% per year may be an underestimate. In other words, rationing means we are not treating patients who might benefit, and this is a direct comparison of dialysis rates, incidence rates of end-stage renal disease, compared to age in Canada, compared to the United States.
First, perhaps we should look at the American white totals, because the black population skews the American averages. If you look at the far column, the rate for American whites, you can see that at every age group there's a substantial gap between what we're doing in Canada and what is being done in the United States, and the gap is greatest in the elderly. In the United States, if you're 75 years old or over, you have more than twice the chance of receiving therapy for end-stage renal disease than we currently have in Canada.
What rationing means is that if someone has end-stage renal disease and they want dialysis and they would benefit from dialysis, if they're not offered it, that is rationing. I believe society has to grapple with whether we are going to sanction rationing in a public manner and create criteria. Right now, we as care givers have no criteria and we have no reason to say no to anybody. We just try to slot them into positions that just aren't available.
The problem and the solutions are not easy. For example, we've also heard this morning about an increase in transplantation rate as being the best solution, and I wholly agree. It's the most cost-effective and it offers the patient the best quality of life. If we could succeed in doubling or tripling transplantation rates, we might not have to have hearings such as the ones we have today to discuss what to do about the dialysis crisis. I hope we can have some honest debate about presumed consent and other imaginative ways to increase the transplantation rate.
The other ways are more difficult. They involve more money, reallocation or whatever word you want to use for it, to go to dialysis, or else to say that we just can't afford it. And if we can't afford it, we have to begin a public debate about rationing of dialysis. It has to be explicit and open and publicly debated and sanctioned by the public so that we could tell patients and families that they are or are not eligible for dialysis.
I just want to conclude that I realize this is an enormously difficult area. We're at a time when the economy is sagging and the health care pie is shrinking. So fiscal reality dictates one thing, and yet dialysis doctors, dialysis nurses, dialysis patients who are going to appear before this committee are going to be telling you that the dialysis slice of the health care pie needs to be expanded.
I don't think nephrologists should be the ones who decide; I think society should decide, through our elected representatives. I hope you can find your way through the muddle I'm sure you're going to be hearing in the next couple of weeks.
I'll conclude there and I'll be happy to answers questions.
The Chair: Thank you very much, and for your slides as well, which help those of us who are not as aware of the terminology and some of the statistical data to better understand what's happening. We have some time for questioning. I'll begin with Ms Sullivan.
Mrs Sullivan: I'm very interested in the presentation you've made, Doctor, particularly in the questions you've put forward with respect to determining how rationing should occur. You said that doctors ought not to be doing that on their own.
I'm also interested, however, in your discussion of where appropriate standards for various kinds of dialysis should be put into place and how they should be put into place. I'd like to start there with a question: What, if any, appropriate peer process is in place now with respect to establishing those protocols and standards?
Then, moving on to the issue of rationing, what recommendations would you have with respect to how a society can come to terms, if assuming rationing, with a discussion surrounding those rationing issues?
Dr Mendelssohn: First, with respect to criteria and standards, currently there basically is nothing. We assume that the Canada Health Act applies and that dialysis should be available to everyone in Ontario who might benefit from it. If patients are referred to us, we bend over backwards to make sure they get something, even though we're full.
We have frank discussions about quality of life on dialysis. With patients who have associated diseases who may not do well, we try to put all the facts on the table for patients to decide, but we believe that in 1994 a competent patient who wants dialysis, knowing what they're getting into, should be offered it.
In terms of standards, the Kidney Foundation of Canada is helping to create the conditions whereby there is a working group for renal services in Ontario creating standards of care in the areas of pre-dialysis, haemodialysis, peritoneal and transplantation. It's a multistakeholder group, including government, hospital, nurses, physicians, and we've grappled with some of these issues, but, again, mostly the people are stakeholders, and I'm not sure at the end of the day, if we're going to limit access to this technology, whether our opinions are more important than broader society's opinions.
The other part of the question was, how should this be done? I'm not sure how it should be done. I know it should be done publicly, and I also feel very strongly that patient groups and care givers in this area should have input into the process.
So you could hear my opinion, while I'm here and while probably no one's going to interrupt me, I'll give you briefly my opinion, which is that, in general, we could dialyse effectively almost anyone. We should, in my opinion, have a liberal intake policy so that everyone is given a chance to benefit, and then we should reassess it after two or three months and say: "Okay, you're not doing so well; your suffering is great. Perhaps we should have a discussion about stopping this therapy."
That's my own opinion about how it should be done. There are at least some principles that most nephrologists would agree with. For example, I'm not sure we should be dialysing irreversibly demented people. But when you get to more difficult areas, it's very difficult to achieve any consensus at all, even among nephrologists.
Mr Jim Wilson: Thank you, Dr Mendelssohn, for not only appearing today and the work that you've put into your presentation, but really for your leadership on this issue. I want to thank you on a personal note for attending a public meeting in my riding some three weeks ago. That was not only a great information session for patients and me myself, but also I think a great morale booster for the community that someone of your prestige would come to little old Alliston and try and help us out in finding solutions for this crisis.
A lot of politicians, as you know, continue to go around saying there are no user fees in the system and that we don't ration. I'll leave user fees for questions of the actual patients who are paying those user fees now, but with respect to rationing now, how bad is it and how are you doing it now, when, as you've testified and as we've heard from the minister, there aren't really written criteria?
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Dr Mendelssohn: We have only indirect evidence of rationing right now. As I said before, patients who are referred, we make room for or we transfer them outside Toronto region if we can't make room in the Toronto region. We have concerns that if rationing is occurring, it's occurring in the communities at the point of referral. In other words, some doc has a couple of patients and knows that Toronto is full. So they either don't call us at all or they only tell us about the young healthy patient and not about the elderly patient.
I have anecdotal evidence; I can tell stories. The actual scientific evidence is lacking at the moment. We have information like I showed you, comparisons with the United States. We know that rationing will not be occurring when incidence rates plateau. In other words, every year it goes up, up, up, up, which means we haven't met the need yet. When it plateaus, we could make the assumption that the need is being met. So because it's going up, up, up, that's another indirect evidence of rationing. Exactly how and why it's occurring in the community is a matter for study, and such a study is under way.
Mr Jim Wilson: In your solutions list, number 1 was increasing the transplantation rate. It's my understanding, though, that in recent years the number of transplants in the province has really plateaued. How much faith do you put in being able to increase the rate in the near future? That's my first question on that. Secondly, can we talk a little bit more about short-term solutions? Because you know, the government's response to this whole thing is the central east dialysis study. The minister has indicated she hopes that will be finished at the end of the summer, but in the meanwhile people are suffering.
Dr Mendelssohn: Yes. The fall in transplantation rate is also not an Ontario-specific problem. It's all over the western world and it relates to things that have been good for society, such as seatbelt legislation, drunk driving programs and that sort of thing. So you're right, the transplantation rate has plateaued or even fallen.
Whether it could be increased in a big hurry, I agree with you: It cannot be. We rely now on voluntary signing of organ cards and voluntary donation. We've relied on public education in order to get the message across, and in my opinion we've plateaued in that area and it's unlikely that it will increase.
I think the way to increase it is with a legislated solution, such as presumed consent legislation, where if you don't sign your driver's card, if your choice is not known, it's presumed that you've consented and the organs will be taken. That's been done in parts of Europe and has succeeded in doubling and tripling transplantation rates. Whether such a thing would be acceptable in Ontario or not is an open question, but I think it's something society should debate, and certainly education would need to be part of a legislated solution along those lines.
You're right; it's not a quick fix. The quick fix is to see where the system can be expanded enough to cope with patients who are coming in the next year, to start plans now for expansion, if not in 1994 then certainly in 1995, and there should be a systematic expansion plan in place bringing dialysis closer to the communities where it's needed.
Mr Jim Wilson: If I may, Mr Chairman, very briefly --
The Chair: One final.
Mr Jim Wilson: -- on the latter point there, bringing dialysis closer to the communities where it's needed, your opinion of satellites as a partial solution, my great fear -- and I think you share this -- is that the study the government's undertaking perhaps will simply look to expand current dialysis centres, which are essentially hospitals. Could you just comment on your opinion of satellites and the feasibility of them?
Dr Mendelssohn: It's sort of ironic that the pattern in the region is that we grow and grow until we burst and then there's a Band-Aid. The Band-Aid is always increasing where it's easiest to increase, which is in the downtown centres, and then we hear the government complain that all the dialysis is in the downtown centres and there's none in the communities where it's needed. So it's like a catch-22.
I agree with you: It's likely that the Band-Aid here will also be in the downtown hospitals. We as nephrologists are all in favour of dialysis in the communities and satellites in the communities. There will have to be a careful selection of patients so that the patients are well enough to be visited less frequently by nephrologists, but certainly those who are able should be dialysed as close to home and as close to work as possible.
Mr Paul Wessenger (Simcoe Centre): Thank you, Dr Mendelssohn. You've touched on some of the areas that I was going to cover. But what I was going to ask you is, I've been told that dialysis can often be done outside a hospital setting and at lower cost than within a hospital setting. Would you agree with that statement?
Dr Mendelssohn: Firstly, the home peritoneal dialysis method which has been discussed today is done largely outside of hospitals for less cost, no question. I've already said that we already have the highest percentage of patients receiving that therapy in the world. There are criteria to make patients acceptable for that. We feel it's already at its maximum. In fact, we feel we have patients whom we leave on that therapy who should be switched to haemo whom we can't switch because we don't have haemo. So that's that.
Now, can haemo be done outside of hospitals? The answer, again, I think is yes. We are already doing that at Sheppard Centre and Sussex Centre. That is full self-care. So that requires patients who can learn to do needling themselves and care of the machine themselves.
I believe there's also a need for an intermediate category which would be called, perhaps, assisted self-care, where a patient could turn up, have the needling and machine care done for them, but basically it's outside of hospital and costs would be lower.
As I mentioned, it's hard to see where costs would be an order of magnitude lower. They could be perhaps 10% or 15% lower, which is a substantial saving none the less.
Mr Wessenger: Do you see any new technology developing that may perhaps provide more alternatives for in-home treatment in the future?
Dr Mendelssohn: One of my colleagues is working on an overnight type of haemodialysis that would be done at home with patients monitored in a central station by computer. That is perhaps one way. But I think the excitement in the area of kidney disease is largely in the area of organ transplantation and either complete artificial kidneys or perhaps crossing the species barrier and being able to use pig kidneys, for example, for humans, which would again make a tremendous difference in the number of patients who need dialysis. But I don't think either of those is likely to occur in the next two to five years, which I think is the time frame we're most interested in.
Mr Wessenger: Fine. Thank you very much.
The Chair: Mr Rizzo, did you have a question?
Mr Tony Rizzo (Oakwood): Yes. From what we heard this afternoon, apparently the kidney transplant is the less costly, most effective solution to the problem. But where would you get the kidneys if that's the case and how costly would they be? What market? Would you go to the international market to get them?
Dr Mendelssohn: I personally find the idea of buying organs on an international market -- morally it doesn't sit quite right, although you could make very interesting and eloquent moral arguments either way. I think it's probably beyond the scope of this group.
I think that the organs should be from Canada, from Ontario. As I said, if society had a presumed-consent type of law, I think that it would succeed in increasing the organ transplant rate substantially.
It would still leave a big problem on dialysis. I don't want people to think that it would cure the problem, because as the dialysis population grows older and older, they are less likely to be able to have an organ transplant. But it would certainly help substantially.
The Chair: Thank you. I wonder if we could ask you, just at the end of your testimony, for reasons of understanding some of the terminology, what in simple terms is the difference between haemodialysis and peritoneal dialysis.
Dr Mendelssohn: Sure. First of all, dialysis in general means replacement of kidney function artificially. So haemodialysis is the artificial kidney machine that you've probably seen on television, where blood actually circulates from the patient, goes to a machine, gets pumped around, and then gets returned to the patient.
Peritoneal dialysis refers to a completely different process where basically a tube is put into the patient's belly and the patient runs fluid in and out of the abdominal cavity to clean the blood. So they basically take out dirty fluid that's been left in overnight, they run in clean fluid first thing in the morning, and then they go about their business until lunchtime. They repeat the process. The usual management is four such exchanges a day: breakfast, lunch, supper and before bed.
The Chair: Thank you very much for coming before the committee today. We really appreciate it.
JACKIE ARCHIBALD
COLLEEN ROTH
ISABELLE BATES
The Chair: I call on Ms Jackie Archibald. We have down as well Mr John Archibald who I gather cannot be here, but Ms Colleen Roth is going to be appearing, and also Ms Isabelle Bates. If the three of you, who I gather are together, would be more comfortable coming forward together, that's fine with us. We'll simply hear you together and then ask our questions.
Welcome, all of you, to the committee. Perhaps at the outset we might start with Ms Archibald. If everyone would be good enough to introduce themselves for Hansard and also for those watching on television, that way they'll know who's who. Just before you do that, members of the committee, if this is agreeable, I would let each of them make a presentation and then we can combine our questioning to any of them after that. Ms Archibald, we'll start with you.
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Ms Jackie Archibald: Hi. My name is Jackie Archibald. I'm from Beeton, Ontario. I'm a coordinator for the Critical Need for a Dialysis Centre in south Simcoe county.
A couple of things today: We're here to propose to establish a satellite-based kidney dialysis centre in the south Simcoe area. This has been the most ongoing critical situation occurring in the south Simcoe area and the public affected by patients and all involved in this plead for a facility.
Most kidney patients who require haemodialyses are travelling to Metropolitan Toronto three times weekly at the cost of their ailing health and their pocketbooks. I'm one of those people. My mother has polycystic kidneys. She's been on dialysis for two years now. I also have a respectable job that I attend five days a week, but I had to take my mom to Toronto three times a week; 12 hours a day we were gone.
We were able to get a home dialysis machine in our house, but unfortunately there was no funding; my father's paying for that. It's costing us approximately $400 a week to have the nurse come to the house to dialyse my mother. She has improved by having dialysis at home, but at the same time the financial burden is so strong on my father that he can hardly cope any more.
I need a drink.
The Chair: Go ahead, there's lots of water there. Take your time.
Ms Archibald: I'm not used to speaking in front of all you people.
I've put together a book here that I'd like to leave for you people to look at -- I know we only have 10 minutes -- and the literature that we've gathered. In the public meetings that we've had up there to have a satellite, we've had over 200 people attend our meetings.
I was also diagnosed in December 1993 with polycystic kidneys. I've been in and out of the hospital seven times since 1993 to this year, Wellesley Hospital being the hospital for treatment. I'm 33 years old. I have three children at home. I can't come to Toronto to be dialysed when my time comes.
We're proposing that the Ministry of Health take a serious look at putting a dialysis satellite in the south Simcoe area for these patients. Like I said, I've put together a book here for you to read. There are letters from patients. I have signatures from patients who would come to the clinic or the satellite. I have a lot of information gathered for you. I just can't get it all out right now.
The Chair: Thank you. We'll take that and make some copies and make sure that everyone in the committee has an opportunity to see that.
Mrs Colleen Roth: I'm Colleen Roth. My father is Alvin Hiltz from Alliston. He has to go three times a week to Toronto on a bus leaving at 8 o'clock in the morning and coming back at 8 o'clock at night. He is 70 years old. My mother is 68 and she has to accompany him because he can barely see, so he cannot see the taxi fares. They have to get a taxi from the Bay Street bus terminal to Wellesley Hospital, where he has to go for four or five hours' dialysis. It is deteriorating his heart and her health condition.
At a meeting in Alliston, we were all sitting there, me and my sister and my mother and father, and my father openly spoke out and said he was giving up on life because he could not struggle with this travelling back and forth to Toronto any more. That's why we're trying to get a satellite dialysis in the Alliston area, for the patients up there. That's all I have to say.
Mrs Isabelle Bates: I'm Isabelle Bates. I'm the president of the south Simcoe chapter of the kidney foundation. I only came along; I didn't realize I was going to have to speak. I'm only here realizing what we are asked to give for transportation for these patients. Our chapter: Our money comes from our March drive, we have a fall dance, we have peanut sales, we have a raffle on a beautiful afghan and in memoriams. Out of that we also try to put a lot to research. This year, to my knowledge, to the Orillia unit, we have had to open up a bank account for transportation for these and it's running a lot less for research, believe me. That's all I have to say.
The Chair: Thank you for coming. We have a good bit of time for questions. I'd like to say as well that with the time that is available, if as we go along there are some other things you wanted to say but forgot to say, please do so. The purpose of these hearings is to hear what the issues are, what some of the problems are and, quite frankly, without your presence we can't know and understand that. If, as I say, as we go along there are some other things, please jump in with those. We'll start the questioning with Mr Wilson.
Mr Jim Wilson: Thank you very much, Jackie, Isabelle and Colleen. We have a good portion of time here for questions, so perhaps through some of my questions we can further explain to the members what your families are going through and what we're going through locally.
Jackie, I want to start with you and to thank you. Your family has been instrumental in the south Simcoe area, in the New Tecumseth area, in organizing the public meetings. I want to thank you publicly for that. We have had, so that members will know, a couple of major public meetings that have been referred to. Over 200 people showed up to the first one and a substantial number to the second one. The interest has been incredible. There are a number of things I want to pursue with you, Jackie, about what's happened at those meetings.
The first one, though, is your father, John Archibald, who's unable to be with us today, and that's probably because he's trying to keep the business together. Perhaps you could just explain what's happened there. Your mother, Anne, went on dialysis. Give us a little history of when she was going to the hospital and why she desperately needed to get home and the time she was in the hospital, and a little more about the cost because I know your father has said to me directly that he thought we weren't supposed to have user fees in the system, yet he's paying $400 a month, so just a little bit of history of what your mother's been going through.
Ms Archibald: A week.
Mr Jim Wilson: A week, sorry, yes.
Ms Archibald: When mother was diagnosed in 1991, she was put on the CAPD from Wellesley Hospital by Dr Janet Roscoe. She went on that and then slowly lost the use of her right side. She became paralysed and was falling all the time and couldn't get up, couldn't do anything; actually, she was bedridden. I had had enough at that point. I phoned an ambulance and had her admitted to the hospital and told them I was not bringing her home until they did something for her.
She was left in Wellesley Hospital for three weeks. Again they didn't do anything. No tests were run. They just kept her in bed, dialysed her, put her back to bed, dialysed her, put her back to bed. So I went down to Wellesley Hospital and I raised some stink and said: "What are you going to do? You can't just leave her there to rot, you know. She needs intense therapy. She's a fighter. What are we going to do?" Dr Roscoe made a couple of calls and within a couple of calls and within a couple of days I had her to Riverdale. She was in Riverdale Hospital for three and a half months being dialysed and under intense therapy, and again, like I said, she's a fighter; she came around.
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At that point the doctors decided that a machine could come home. She qualified for a machine in her house. My father and I thought, "Great." It really boosted mother up and her morale, her spirits, her health, her blood pressure, everything started coming together.
We received the machine in the House. Dad put a new floor in, did a room for them. The machine came. At that time we thought all expenses were paid for through the Ministry of Health. We came to find out it wasn't: lack of communication. Dad couldn't very well take the machine away from mother because it was keeping her alive. She came around 110%. He has to pay for it out of his own pocket, which runs him between $350 and $400 a week. With the economy being the way it is, and the business, he's come from a two-income family down to a one, and he goes to work to come home to hand his paycheque over to the nurse.
Mr Jim Wilson: How old is your mother?
Ms Archibald: Fifty-three.
Mr Jim Wilson: Fifty-three, and prior to being stricken with kidney failure she was in good health and she was the second income, is that right?
Ms Archibald: Yes.
Mr Jim Wilson: With what's happened at the public meetings, there's been a tremendous petition campaign in the local area, which you've helped with and Colleen's helped with and Isabelle's helped with, and many people have. I've been presenting those petitions in the Legislature, but in addition to that, can you explain to the committee perhaps what some of the initiatives have been.
I'm thinking, for example, of the service clubs that have been at the public meetings and said, "We will do whatever it takes to raise money to put a satellite in our area." They're frustrated because the ministry has said, "Even if you raise money now, we wouldn't know what to do with it." Can you just confirm for the committee that the local communities are willing to raise the money for the machines or the office to put in a satellite and explain some of the frustration we're feeling with respect to the government's foot-dragging on this issue.
Ms Archibald: Even myself, I'm really confused too. I have a job and I've put a lot of man-hours and a lot of legwork into the research here, and yes, our community is behind us and we want to go on and carry on and get together and raise money, but the ministry is holding us back by saying we have to wait till this planning's done.
I've had a couple of lists. It's not up to date because one of the patients who was called had passed away, but we could provide some of that information to the ministry. I have a lot of information. I don't think we can wait and wait and wait. We were told in September that the planning was going to start and we were waiting for an answer in March and now we hear today that it'll be by the end of summer. Then the end of summer's going to come. We don't have 12 years.
I'm not coming to Toronto to be dialysed. I have three children. I can't walk out of my job and go on social assistance or welfare. Who's going to look after my kids? If I'm home or close to the area, I'm gone for four hours or four and a half hours a day, and I can be home and I can still go to work.
Mr Jim Wilson: My last question for you, Jackie, is, it was your mother who in the south end of the riding brought me up to speed on what the situation was with respect to dialysis patients and I remember her saying to me she couldn't understand for the world why she couldn't share her machine when she got it at home.
Ms Archibald: Absolutely. I agree.
Mr Jim Wilson: Has she been given any reason why she can't share her machine?
Ms Archibald: No, none. We've asked and I've asked at Wellesley Hospital too and they said that's her machine and other patients are through other hospitals and it's a different machine. Well, it still does the same thing. My mom's machine sits empty Tuesday, Thursday and Sunday and half days on Monday, Wednesday and Friday. Two people could be dialysed six days a week with one machine and one nurse.
Mr Jim Wilson: How much time do we have?
The Chair: We have another 15 minutes.
Mr Jim Wilson: Could I ask one question to Colleen? I think it's important, and I raised it in the Legislature three weeks ago. Colleen's father's name is Mr Alvin Hiltz, as you've told us, Colleen. I thought it was the most astounding thing I'd ever heard at a public meeting, and didn't think I would ever hear that in my time in either public or private life: that, when there were over 200 people gathered in the seniors' hall in Alliston, your father would get up and say he was essentially giving up on life. Can you tell us what effect that's had on the family?
Mrs Roth: A tremendous effect. I have a three-year-old daughter and I would like her grandparents to see her grow up. And if they don't get the dialysis, if he has to travel, I don't think he'll make it past the summer because he won't be able to take the heat, and neither will my mother, and they're going to lose out in seeing my daughter grow up. It's killing all of us thinking that we're one day going to find out we have to go to our parents' funeral.
Mr Jim Wilson: When, if he had dialysis, his death is preventable for quite a few years.
Mrs Roth: He's been on the home dialysis for nine years and it's kept him alive for nine years, so if he had to travel to Alliston five minutes away, it might, for two or three years --
Mr Jim Wilson: Maybe we should just explain that briefly. Mr Hiltz was on peritoneal dialysis -- which is a drip bag, as Dr Mendelssohn described it -- for many years, and then his condition deteriorated to the point where he had to go on haemodialysis just last year, and has been several months now driving three days a week to Wellesley Hospital in Toronto.
I think the committee should hear what his day is when he has to travel. I'll just summarize it, and you can tell me whether I'm right or wrong. He told me when I was at your house, and he told the news people, that he gets up early in the morning to take a taxi from one end of town to downtown Alliston, to catch the bus that goes to Toronto at 8 in the morning, and that bus takes about two and a half hours?
Mrs Roth: They get into Toronto about a quarter after 10.
Mr Jim Wilson: So two and a quarter hours, because it goes through Bolton and makes a number of stops, all the little towns. Then he has to take a taxi from the bus station, as you said, downtown Toronto up to Wellesley Hospital, and repeat the whole thing at night, and he tells me he's not back till --
Mrs Roth: Eight o'clock.
Mr Jim Wilson: A 12-hour trip. What's the cost of that trip and the effect on his income?
Mrs Roth: It's $40 a trip for him and my mother, and then when they get to the bus station, the taxis are around $7 a trip and $7 back. They're senior citizens, on senior citizen income, and it's financially draining them.
Mr Jim Wilson: He told me that it was the equivalent of one of their pension cheques, a full pension cheque, plus they've been borrowing money from you at the end of each month just to buy groceries.
Mrs Roth: Yes.
Mr Wessenger: Thank you for your presentation. First, a point of clarification: Your mother is on a haemodialysis unit in the home, is that correct?
Ms Archibald: Yes.
Mr Wessenger: And how long has she been on that machine?
Ms Archibald: On the machine at home? Since July 1993.
Mr Wessenger: And you indicate that she receives dialysis three times a week on her machine?
Ms Archibald: At home, yes.
Mr Wessenger: And you have a nurse come in? Would that be from the VON?
Ms Archibald: No. It was a nurse we hired. Wellesley Hospital said: "Run an ad in the paper. You might as well pick your registered nurse so that you're happy with her, close to home, and then she could come down here for the training and then write her exam." And that's what we did.
Mr Wessenger: Then I gather this isn't covered under home care, home nursing --
Ms Archibald: No.
Mr Wessenger: -- that there's nothing in the program that would cover this, so any person receiving haemodialysis in the home would not have any of the nursing care.
Ms Archibald: Anybody I've spoken to, the hospitals are funding the nurses. There's another lady in Alliston, Eileen Richardson; her nurse is funded through the hospital. There's another gentleman in Alliston; his nurse is funded through the hospital. But my family's isn't, for some reason. There's no money, is what they told us.
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Mr Wessenger: So some are funded and some are not. Well, that's certainly interesting.
With the medical condition of your mother, would she have been a candidate for transplantation?
Ms Archibald: Yes. That's another thing: They've lost her tests and everything four times. Now I have to go back and have her all retested again. It starts in April.
Mr Wessenger: She is on a waiting list, then?
Ms Archibald: She was. The tests are lost again. They've asked for all the tests to be done again. They said they were misplaced. I'm not sure; I can't answer. She'd better be.
Mr Wessenger: I understand you've done quite a bit of work trying to look into the feasibility of having a satellite centre in your area.
Ms Archibald: Yes, I have.
Mr Wessenger: Is there any information you can tell the committee about what you've been told about -- I understand your group has identified some patients already who would be --
Ms Archibald: Yes. I have some signed documentation here, signed and dated, from the patients that I can leave with you.
Mr Wessenger: The figure, I believe, is around seven, is that correct?
Ms Archibald: I have seven right now. I can get more to come in.
Mr Wessenger: You've been told that if you had 12 patients, that would be a viable entity for the area, is that correct?
Ms Archibald: That's correct.
Mr Wessenger: Fine. Thank you very much.
Mrs Sullivan: I want to pursue the question of nursing. We've heard from Ms Archibald about her personal family circumstance with respect to nursing availability and coverage. I'd like to know a lot more about that and have information in front of the committee with respect to how nursing costs are covered; if there are other alternatives; how many patients are in similar situations; and whether the hospital global is expected to cover home nursing care in a home haemo situation.
The Chair: You'd like us to get that from the ministry?
Mrs Sullivan: From the ministry or from research, whoever will be able to provide us with that information. I'd just like to have it a lot clearer in my mind.
The Chair: As to how the system actually works, how it's funded, organized.
Mrs Sullivan: Yes, and whether there ought to be some availability, through home care, of coverage in this situation or whether it indeed should be a global funding issue.
The other question I wanted to ask was with respect to the process that has been undertaken with the Ministry of Health. Have you, along with your group, gone through the routine demand steps? Have you taken the issue of the satellite centre to the district health council?
Ms Archibald: Yes.
Mrs Sullivan: And did the district health council concur with your recommendation?
Ms Archibald: Yes.
Mrs Sullivan: So they have in fact supported your recommendation to the ministry?
Ms Archibald: Yes.
Mrs Sullivan: When did that happen, do you know? Was it just recently?
Ms Archibald: February 20 is when I started meeting with them. I just had another meeting with Sunny Jacob on Monday night and went and spoke to him.
Mrs Sullivan: But there has been an actual formal recommendation from the district health council to the minister that is fairly recent? Or is it an older recommendation?
Ms Archibald: No, it's recent.
Mrs Sullivan: So it's within the past two or three days, and their recommendation included the data that you had prepared. Did they add any other material to that recommendation, do you know?
Ms Archibald: No, I don't know.
Mr Jim Wilson: Can I help out the witness on this?
The Chair: Certainly.
Mr Jim Wilson: The district health council, Mr Floyd Dale, has been involved from the very beginning. In fact, the meetings held here at Queen's Park at which ministry representatives were in attendance, along with all the local hospital administrators, Dr Roscoe and representatives of the Toronto dialysis committee, a monitoring person from Ruth Grier's office -- those meetings took place last year. We've had nothing but support from the Simcoe County District Health Council. They've been at every meeting. Sunny Jacob, who's the representative and will be the representative and is the representative on the central Ontario study, has been pushing the cause.
If I could answer specifically whether an unsolicited proposal has been submitted to the ministry, the district health council has told us they think that's futile at this point, given that the consistent response from the government is, "Wait for the study." Why fill out all the paperwork, has been the district health council's view, when there's going to be a rejection and they've been told behind closed doors that there will be a rejection until the study comes forward.
Mrs Sullivan: That's interesting. Just while we have Mrs Bates here from the kidney foundation, I wonder if you could describe to us the kind of social supports that you see dialysis patients needing and how the kidney foundation is providing some of those supports, and where you might see other needs for patients. We've heard of the issues of transportation, we've heard certainly of the cost of nursing. Could you tell us what other areas of concentration you see the kidney foundation being able to help and where there are still gaps?
Mrs Bates: We, as our chapter, cannot say how much we can give. We're on a budget. So much goes to our patient services, which goes to transportation, some drugs, but it all goes down to the social worker, each patient's social worker. She or he will recommend, and then we get the bill. Two weeks ago we got a bill for $1,800 for transportation just for four people, and just for the latter part of 1993. As of January 1, when the Orillia one opened, we have had to set up a bank account up there and put so much into it every so often. Then when it's all gone, they'll ask for more.
Mrs Sullivan: Then you have more bake sales.
Mrs Bates: No, we're not doing that. I'm willing to walk the streets banging on doors for money and selling raffle tickets. I should have had books of tickets down here today, shouldn't I?
Mrs Sullivan: That's right. You would have been a winner.
Mr Jim Wilson: You did bring some petitions, though.
Mrs Bates: I, fortunately, do not have anyone in my family with kidney disease, but I am working hard for them. I went everywhere last year selling raffle tickets. People were, "Oh, not her again."
Mrs Sullivan: How much money would the kidney foundation raise in your area?
Mrs Bates: Had I known, I would have brought my figures. Last year, in the Alliston area -- Alliston, Beeton, New Tecumseth, Cookstown -- I think we got $14,000 in our March drive, and I don't know exactly how much we got in our dance.
Ms Archibald: It was $44,000.
Mrs Bates: So $44,000, but that includes an awful lot of work -- selling peanuts. It includes a lot of work.
Mrs Sullivan: Right, and all of that money is clearly going out almost as fast as it's coming in, in terms of assisting patients.
Mrs Bates: A lot goes to research.
The Chair: On behalf of the committee, I want to thank the three of you for coming down. The clerk will get the booklet from you, so we could copy it. Would you like us to return the original to you?
Ms Archibald: Oh, you can't have the original. It's my Bible. I've already --
The Chair: You've got a copy. Okay. We do want to thank all of you for coming and for sharing with us your personal experiences and observations on a particular part of the province.
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TED TOFFELMIRE
The Chair: I then call on our final presenter for today, Dr Ted Toffelmire, who's a nephrologist at Kingston General Hospital. Would you be good enough to come forward. Welcome to the committee. We appreciate your coming from Kingston. Would you like some water? Once you're settled, please go ahead with your presentation, and we'll have some questions when you're finished.
Dr Ted Toffelmire: First of all, I'd like to thank you very much for the invitation to come and address this committee, which really is focusing as a matter of its study on a matter of life and death for many of the residents of our esteemed province.
It's really a pleasure for me to get away for a day from the first federal House of Parliament and to be in this Legislative Building, and the name of this first legislative Parliament is, of course, Kingston General Hospital.
Kingston General Hospital, you might know from some of the material that's been handed out already, has been the recent recipient of approval to develop a haemodialysis unit in a shopping mall. This mall is on the outskirts of Belleville, and it's in this location where selected eligible patients are able to dialyse themselves closer to their own home, thus avoiding the two-hour round-trip risk on the 401, especially on blizzardy days, three times weekly.
You will note that this unit was opened in September 1993, and at that time 19 patients filled the 20-slot schedule, which was its capacity.
Much of the information which has been provided in the opening statements and by previous speakers is quite accurate, and it lays the groundwork for the task which is before you. I'd like to underline a couple of these issues and apply them to the situations which we face in southeastern Ontario.
On three occasions so far this afternoon, you've heard that the end-stage renal disease population is growing. This isn't new data. For the last 15 years the nephrology community, not only in Ontario but in many other parts of the world, have collected accurate information on the number of patients receiving dialysis annually, and we've seen a progressive and steady growth in this population of somewhere in the range of 10% per year.
Thus we have over a decade of epidemiologic data which really should provide us with a very strong predictive power as to what sort of numbers we're developing. It should not be a surprise from one month to the next or from one year to the next that, goodness sakes, we've reached another capacity and we have to find another way to solve the problem that has developed.
Why is this population growing? There's certainly a lack of scientific information to address this issue, although some of the factors that come into play are the improved survival of patients with end-stage renal disease; our techniques of dialysis and the quality that we provide is certainly better than in its infancy of 20 or 30 years ago; the population in our province and indeed in the world is aging, and as people get older more of their organs are failing, and certainly their kidneys are part of those organs. So more patients are requiring end-stage renal disease replacement.
There's improved survival of patients with diabetes. In past years, patients with diabetes would die of complications and side effects at an earlier age, but they are surviving longer and at this point developing difficulties with their kidneys which place them on dialysis.
Hypertension is also an issue. We don't have strong epidemiologic data to suggest that treatment of hypertension will prevent renal disease, but certainly we can see that once a person has developed early renal disease, if we can control their hypertension, they will live longer and do better.
There are certainly technical advances in dialysis. We have the ability now through some of the computerized monitors to be able to dialyse very unstable patients who were basically impossible to dialyse 10 or 15 years ago.
These are some of the reasons why the population may be growing, and there are certainly some others that I haven't mentioned.
Next, I'd like to review the position of our province with respect to the provision of health care in Ontario. Many of these data are also available in the information circulated earlier by the ministry entitled Ontario Renal Disease Planning and Services, with the notable exception of some of the data on some of our neighbours. The country names at the bottom of this slide are unreadable from your position. On the left is Japan and the second from the left is the United States. Canada is the second one from the right, sitting right beside Denmark.
This is more on our neighbours. On the left-hand side is Canada. This is the rate per million receiving dialysis there or receiving care for end-stage renal disease. So Canada is on the left, Manitoba is the second from the left, then comes Ontario, then comes Quebec. Certainly, Ontario sits halfway between Manitoba and Quebec. You'll notice that just to our south we have New York state. New York state has approximately double the number of patients receiving end-stage renal disease therapy that we do.
The question obviously comes up: What's the difference between the people who live in our province and the people who are directly neighbouring on us? Is it that our population is so much more healthy than our neighbours' in Manitoba or in New York, or is that, for one reason or another, these patients in Ontario -- the difference in the statistics in Ontario and our neighbours represents a gap that we're not filling, that we're not treating?
I'd like to summarize this material by saying that we should expect the number of patients in our communities in Ontario to require renal replacement therapy to continue to rise annually. I would suggest that this rate of growth might actually be expected to rise faster in the next few years, closer to that of our neighbours to the west or to the south.
I'd now like to spend a little bit of time introducing you to southeastern Ontario, where I would like you to come and spend your tourist dollars. This slide here is a slide of James Bay. I've put that in to remind you that Queen's University has a special historic relationship with the Moose Factory zone as far as provision of health care is concerned. So the nephrologists at Queen's care for those patients. You'll see five blue dots there. Those are patients in that area who receive dialysis under the care of the nephrologist at Kingston General Hospital.
You also notice the absence of orange dots. Orange dots are the patients who are on haemodialysis. The patients who are represented by orange dots have had to, obviously, move south, completely relocate away from their community and away from their culture in order to continue to receive their therapy.
This is a map of southeastern Ontario, the official roadways. You notice a concentration of dots in the populated areas -- Kingston, Trenton, Belleville, Picton -- and then a scattering of dots elsewhere. It's interesting: If you look at the number of patients on dialysis in the Kingston area compared to what you would expect across Ontario, there are certainly more patients being dialysed in Kingston than you would expect. If you go up, for example, to Bancroft here -- by the way, this patient comes down to Kingston three times a week and goes back up, even in the middle of the wintertime -- the number of patients in Bancroft receiving dialysis is much less than one might expect.
There's two reasons for this. The most obvious reason is that when a person in Bancroft receives the diagnosis of end-stage renal disease, they contact the moving company and make it down to Kingston, where their travel isn't quite as far. This is a routine occurrence in southeastern Ontario, although the dots that are spread out as far to the east as Cornwall and as far to the west as Port Hope do indicate that we do have patients who either prefer to travel the distance to Kingston three times a week or to care for themselves at their own home.
The issue about home haemodialysis has been raised earlier. In Kingston, we agree that the cost to our hospital of home haemodialysis is less than that of in-centre haemodialysis. As a matter of fact, the cost savings by taking one of our machines and giving it to the patient in his own home, teaching him how to use it himself, from the point of view of labour and of overhead are sufficient to pay for that machine within the first year to 18 months of therapy. So if we can predict that a patient will be on home haemodialysis more than about 12 to 18 months, that would be the financially preferable way to go. Unfortunately, many patients don't have that option because either they are incapable of learning how to run the machine or they don't have a partner to help them out. The issue of a paid helper has come up. Although none of our patients are receiving paid helpers, the hospital doesn't have the funds to support that.
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Some of the dots in the Kingston area as well as outlying areas are patients who are on peritoneal dialysis. There are two forms of peritoneal dialysis. There is the usual form that we've discussed earlier this afternoon, which is chronic ambulatory peritoneal dialysis where the fluid goes in and comes out four times a day.
There are approximately 18 patients in here, actually farther away rather than closer, although certainly some of them are closer to Kingston. These 18 patients do their exchanges of the half gallon of waterlike fluid four times a day, but they do it at night. The way they do it at night is they have a cycler. A cycler, unfortunately, is a capital outlay somewhere in the range of $5,000 to $8,000, but they are able to live their day like normal. They get ready to go to bed; they hook themselves up to the cycler, make sure that they have hung the correct bags for overnight; they then go to sleep and let the cycler do the job until the next morning. Next morning when they wake up, as long as there haven't been any alarms on the machine, they disconnect themselves from the cycler and they go about their business during the day.
This is another way that patients can care for themselves at home, taking responsibility for their own care. The assisted cycler program of this nature, where some VONs go in and do the hookups and disconnections, or some family members go in and do the hookups or disconnections, successfully keeps some of these patients off the expensive form of in-centre haemodialysis -- one way of trying to reduce the labour and reduce the overhead.
Nevertheless, there are some patients who require in-centre haemodialysis because they fail to meet the requirements for the other types of dialysis, and those are certainly the patients who have either moved to Kingston or are actually receiving their care in-centre.
One of the issues that is important to realize is the limitations of care; what limits the provision of dialysis therapy. One of the obvious ones, being a trained physician, is that if you lack trained physicians you will be unable to receive sufficient care. Certainly, this is becoming a limiting factor. I know of at least 10 openings in Canada where a trained nephrologist could immediately get a job and there are not 10 nephrologists to fill those positions. In Kingston we have five physicians doing the job of six. Even though this is a limitation, this personnel resource is dwarfed by the unstable financial resources available to us.
Life-support funding has been discussed earlier this afternoon, and I'm led to believe locally that the reimbursement of life-support requests or funds is somewhere in the range of 80 cents on the dollar. So for every dollar spent the hospital receives 80 cents back.
There is also a difficulty with the stability of this funding. In the early 1980s, when the life-support program was initiated, it was seen as being stable and the hospitals were able to expand their dialysis facilities as necessary according to patient requirement. Unfortunately, with the presence of instability in this funding and also the presence of the hospital global budgets, there has been the presence of artificial caps and ceilings on the local programs, if not intentionally or in a written fashion, at least by implication at the local level in many parts of the province, but not all.
Part of the funding issue also relates to patients who require haemodialysis or end-stage renal disease therapy from outside of their own locality. Although our furthest patient to the west here is in Port Hope, we also dialyse patients from Toronto from time to time, and that's basically when so-and-so from Wellesley Hospital or other centres calls us up and says: "This patient has a potassium of 7.5. You and I both know that they're going to be dead by the morning. We don't have the resources to care for this patient. Can you possibly take care of this patient?"
Our resources are stretched but at this point are not stretched so far as to allow a patient of that nature to die, so we do accept them in transfer. Unfortunately, some centres also tie the transfer to the transfer of funds to care for that patient. Kingston, to date, has not required transfer of funds on an urgent basis but certainly where patients are required to be cared for from out of our catchment area for a long period of time, it's incumbent upon the hospital administrators to discuss with each other just how those resources are going to be spent or transferred from one to the other.
Finally, if I might, I take this opportunity to suggest some recommendations to this committee.
First of all, I'd like to echo the minister's words in her opening statement. Specifically, she mentioned that our population deserves the very best care which can be offered. As far as I'm concerned, we must treat the patient as an individual. We must maximize their health care. We must maximize their quality of life.
We must stabilize funding.
We need a plan.
We need to offer end-stage renal disease therapy to all patients who (a) require it and (b) want it. There are some patients who don't want it. As Dr Mendelssohn mentioned earlier in response to one of the questions, some patients don't know what they're getting into when they are faced with dialysis. It is certainly reasonable to start dialysis for a couple of months -- it is not an irreversible decision -- and on occasion, although a rare occasion, the patient sometimes decides that the quality of life, either transporting back and forth or on the machine, is not up to the standard they require to finish their days off, so they discontinue therapy.
We can't tolerate artificial caps or ceilings, especially in the Kingston area where there's no alternative in the region. We can't call, at 10 o'clock at night, the hospital down the street and say: "We're out of dialysis resources. Could you please take over?" The hospital down the street doesn't have a dialysis unit. The one down the street is three hours away by car. The helicopter works when the weather's good.
Finally, one thing you need to consider is how much participation the patient is going to take in his own care: How much responsibility are they going to take? This is a difficult issue to look at. Some of us in health care have looked at patients very paternalistically and decided that we really may and can provide them with everything we have. This isn't the case when you go looking for a job or looking for a house. The patients themselves really should be taking some sort of responsibility in their care, and, depending on the patient and their social environment and their location of residence, this may vary among patients. Thank you for your attention.
The Chair: Thank you very much for the presentation. We have a number of questions, and we'll move right to it.
Mr Wessenger: Thank you, Dr Toffelmire. I note that you've had the experience of operating both a centre within the hospital and a satellite centre in Belleville. Is there a difference in the type of treatment that's delivered, between that in the satellite centre and that in the hospital?
Dr Toffelmire: The treatment is identical from the point of view of quality of medical care or exactly what type of medical care is provided. It's exactly the same machines. It's exactly the same dialyse aid. It's exactly the same needles.
There are two differences. The major difference is that a patient has to do it himself. He doesn't have a nurse there to help him. If the machine alarms or if something goes awry or a needle falls out and he sprays blood over the floor, he has to take care of it. We do have two nurses on site to take care of unfortunate eventualities, and those two nurses per shift are actually doing quite a job of doing that.
Interestingly enough, after a certain amount of training -- extensive training, actually -- the patients do very well, once we've selected them. We select them in Kingston by choosing patients who are medically stable for a prolonged period of time -- in other words, they haven't run into other medical complications for two or three months -- and who also are capable of safely doing it themselves.
This obviously means there are some patients living in the Trenton or Cobourg or Belleville area who cannot come to Belleville for dialysis; they have to come to Kingston because they don't meet the criteria. But if they do meet the criteria, they can do it themselves in Belleville.
Two of the advantages to the Belleville unit or to the self-care unit -- I wasn't going to mention the improved finances. The two advantages from the patient's point of view are, first, that there's an awful lot more flexibility. They don't have to be at Kingston at 6:30 in the morning to start dialysis, which means they have to get out of bed at 4 o'clock to get there in time. They can wander in approximately when they need to, give or take a half-hour or an hour.
The other major benefit I see: Not all the patients agree with me, but I believe the participation in their own care is a significant factor which improves the quality of their care. They now understand what factors are making some things improve and what factors are making some things deteriorate. As opposed to coming in one day and telling the nurse off because they've drunk too much water over the weekend, they come in realizing that it's their responsibility. I honestly believe their care is better. That's a difficult thing to prove scientifically, because obviously these patients are the healthy ones who were preselected to be good, but the patients in Belleville are stable and they're good.
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Mr Wessenger: Any idea, a rough percentage, of the type of patients you think could be dealt with at the self-treatment type of centre?
Dr Toffelmire: Let's define "self-treatment" just a bit. The chronic ambulatory peritoneal dialysis we're talking about is also a self-treatment, and that obviously is done outside of the hospital. If we limit our observations to the haemodialysis unit, of our total population of nearly 100 patients we have 20 patients in the self-care unit in Belleville and we have approximately 10 patients in the self-care unit in Kingston, so that's somewhere in the range of almost one third of the haemodialysis patients who can do self-care.
Mr Wessenger: I assume that those who would do self-care at the satellite centre could also do it at home. Would that be a fair reflection?
Dr Toffelmire: They would be capable of doing it themselves at home, but there are two other things: When they dialyse themselves in the self-care centre, they do have a surrounding of people for help. For example, if something goes wrong, there is somebody there, either a patient next to them or a nurse at least in the next room, who can help them out. This is going to happen from time to time. I don't think there would be very many physicians in the province yet comfortable with allowing a patient to dialyse themselves all by themselves, privately, with nobody watching over them. On many occasions this would be safe, but on the rare occasion when it wouldn't be safe, that would be a real tragedy.
Mrs Sullivan: There are several issues you've raised that I'm quite interested in, one of them with respect to the ratios you've raised in your charts. You've shown Ontario with respect to dialysis comparable to Denmark, I gather. How would the transplant ratios compare to those other jurisdictions?
Dr Toffelmire: Certainly the transplant rates vary between countries. For example, in Japan transplant rates are relatively low. That may explain some of the discrepancy, but certainly not all of the discrepancy between the incidence and prevalence of dialysis therapy in Ontario or in Canada.
Mrs Sullivan: I wonder, particularly in relationship to those jurisdictions that are most comparable to ours, if in fact we do have a higher transplant rate than, say, the US as well. Perhaps someone knows that.
Mr Wessenger: I think it's in the graphs. It does show we do have a substantially higher transplant rate than the USA. It's 258.4 per million population in Ontario, and it's 182.2 in the USA.
The Chair: That's in that background document?
Mr Wessenger: Yes.
Mrs Sullivan: Somebody may want to explain the significance of that, but it seems to me that that would be significant.
You touched on the fact that the dialysis machines are not the only issue, that human resources -- other people to assist the patients -- and indeed medical supplies are also part of the scenario. Given that, what would you say would be the effective size for a satellite centre? What would you see as being other necessary supports within a satellite centre over and beyond the machines and the physical location?
Dr Toffelmire: Part of the question has to be answered by saying that there's going to be a lot of local variability. There are going to be solutions found in some localities which are preferable for that area and not in others. You're right that the cost of the machines is present, but compared to the cost of the labour and the overhead, it dwarfs considerably.
For example, if a satellite unit were present in Toronto, as it is, there doesn't need to be a doctor nearby, there doesn't need to be a number of other resources nearby, laundry facilities and that sort of thing, because it's a few miles down the road where those facilities are easily available, and if the patient in the satellite centre needs to be seen, they slip down to the main unit in Toronto.
In the more remote areas, that's a little more difficult. The patients who are dialysing in Belleville do not see physicians from one treatment to the next. We go down there on a monthly basis to review them, basically to review how they're doing, how they're complying and what their bloodwork is.
Depending on the local situation, it may be necessary for a physician to see them more or less frequently. In most centres, I understand that the patients actually are not visited by the physicians but that the patients go back to the parent site to be seen as follow-up. That's probably a more efficient way to do it, but the patient's quality of life and quality of care might diminish a bit.
Mrs Sullivan: I understand that at Kingston general, there is a Rand formula, an outcomes measurement form used with dialysis patients. I don't know if it's still being used, but certainly I read a paper about it being used a couple of years ago. I wonder if you've used that in the satellite centre, or a similar patient measurement of patient satisfaction, and what kinds of responses you have received in those analyses with respect to satellite centre delivery vis-à-vis institutional delivery.
Dr Toffelmire: I'm surprised at the amount of up-to-date information you have. Yes, we are using the Rand measurements. I didn't know how widely that was understood. We began to use it on an experimental basis a couple of years ago. Specifically, when we knew we were sending patients to Belleville, we thought this was an ideal research opportunity, where we could see what the patients were like in terms of quality-of-life measurement before they went to Belleville, followed up by after going to Belleville.
They've only been in Belleville for six months now, and in general the quality of life is similar to that when they were in Kingston, except for a couple of the scores. For example, general health score across the board seems to have been improved coincident with their move to Belleville. Whether this is because they don't have to travel isn't clear at this point.
We've gotten a lot of information from the SF-36 questionnaire we've been sending out. We're checking most of our patients approximately every three or four months to see what sort of quality of life they have, and is there anything other than lab data we can address to help improve their quality of life? Such things as mobility aids, physiotherapy, occupational therapy, which may not immediately be obvious, are sometimes being brought to our attention by some of the responses to these questionnaires on our general population as well.
Mrs Sullivan: I think I'd be interested in seeing those when you're finished.
The Chair: Mr Wilson. I just note that Dr Mendelssohn would like to make a couple of comments, with Dr Toffelmire's indulgence. After Mr Wilson has asked his question, I'll invite Dr Mendelssohn back to the table, and indeed if there are things people want to comment while we've got everyone here, I think would be useful for the committee to take advantage of our two specialists.
Mr Jim Wilson: Thank you very much, Dr Toffelmire, for attending today. I know you're a very busy individual in eastern Ontario.
With respect to background information, yes, some members are very much up to date on the issue. I think a lot of the credit goes to Dr Mendelssohn and Dr Roscoe, who have kept their fax machines very busy providing us with background information, and doing it in a non-partisan way, obviously, because they're supplying everybody with it.
The highway map of the province you showed us with the clusters of patients shocked me, with your comments about patients moving. Is that generally what the recommendation is from their local physicians, that they move? I know what happened to one of our patients. When the physician got so frustrated, he suggested to a person who now has an in-home machine: "Listen, the system can't look after you. We can't look after you. If you can't stand the drive, you'll just have to move to Toronto." I thought that was an astounding thing to have been said in the 1990s, but according to your map it seems it's quite common that that's what has to happen.
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Dr Toffelmire: Yes. The decision goes on much earlier, usually prior to starting dialysis. They realize that they are going to start dialysis and we then begin to educate them as to what options are available.
We've talked about the peritoneal dialysis and the haemodialysis and, in general, we're telling them that the influence of peritoneal dialysis on their lives is that they're going to have to do something with their catheter probably four times a day or four times a night, but it's in their own home.
If they require in-centre haemodialysis, and that means the drive, in Kingston, when you live across the street, that's not a big deal, but if you live in Bancroft, it is a big deal. You couldn't really see the colours of the dots on that map, but they were colour-coded to peritoneal dialysis and haemodialysis. Many of the dots that were farther away from Kingston were obviously patients who were on peritoneal dialysis; some of them travelled, but many were on peritoneal dialysis.
We attempt very strongly to allow the patient their choice of their modality. One of the options that we would like to provide them with is a dialysis unit in their own community, but that isn't feasible in 1989, 1990, 1994. When they have to make the decision, they have to look at what's available right now, and that basically means self-care in Belleville, move to Kingston or drive to Kingston, or peritoneal dialysis.
Mr Jim Wilson: I was also interested in your comments that some patients don't want haemodialysis. What happens to them if they reject dialysis treatment?
Dr Toffelmire: If patients have end-stage renal disease and they decide that they don't want to be dialysed, they die.
Mr Jim Wilson: Would it be your opinion -- this may be an obvious answer; it may not be -- but if they had a satellite in their own community, would it make that choice a lot easier or not?
Dr Toffelmire: It's hard to answer that but probably, if the facilities were closer by, some more patients would accept them. It's a little bit out of the region that we're talking about, but a couple of our patients in Moose Factory zone have decided that they really do not want to move away from their culture in order to get their haemodialysis or peritoneal dialysis, so they've stayed there and died. That hasn't been as common in the more heavily populated areas in southern Ontario but it does occur.
Mr Jim Wilson: That's astounding. With respect to Dr Mendelssohn's comments about a liberal intake policy, do you share his view there that we should try and put as many people on dialysis as possible and then weed it out from there, depending on the patients?
Dr Toffelmire: Every patient who suffers from end-stage renal disease we know is going to die if they're not dialysed, and certainly I agree that patients who have that disease should receive the therapy of choice, it being available, so it's offered to all patients. Some patients -- although I said the rare ones -- the occasional patient will find that dialysis is not something that sustains the quality of life that they require and so they will stop and die, but that is a big minority. Most patients would prefer to live than to die and would prefer dialysis than not.
The Chair: Dr Mendelssohn, do you want to come up and join Dr Toffelmire? I think it was during Mr Wessenger's question, I could see that you had a couple of thoughts you wanted to add, To members of the committee, if there is one more question that people want to ask while we've got both of them here together, the Chair is prepared to accept those questions.
Dr Mendelssohn: I just thought it was important to expand on the answer about what's the correct proportion of patients who can do self-care. It varies according to the region, because of the population demographics and also because of the percentage of patients who are already doing home dialysis by the peritoneal method.
For example, in Toronto 50% of patients do home peritoneal dialysis. The provincial average is only about a third. If you have way more patients doing home peritoneal dialysis and you have the other 50% doing haemo, a smaller per cent of what's left over, if you like, can do the self-care.
What hasn't come through in the presentation so far is that in the 10 or so years from 1981 to 1992, the average age on dialysis has increased from roughly 51 to 57 years. In general, as the population ages, then they are less able to do self-care. As we move into the late 1990s, you could anticipate perhaps that the percentage who are able will decrease.
One of the things we've seen in Toronto is that in the last 10 years we actually increased the percentage of haemo because of the aging population. You can't give one formula for the whole province.
The Chair: Ms Sullivan, you had a question.
Mrs Sullivan: Yes. I wanted to just ask a supplementary to the question Mr Wilson asked with respect to people choosing not to receive dialysis at all. The assumption is, of course, if the consent or withdrawal of consent is informed, if they understand the risks and the various opportunities for treatment, that is an appropriate decision for someone to make. Would there be many instances where that decision is made in a substituted way? In other words, are you dealing with a person who is incapable of understanding frequently the full range of choice?
Dr Toffelmire: The scenario that you bring up is a difficult one to answer. Certainly in the Kingston area, there are no patients who have stopped dialysis without considering it in their own mind and making the choice themselves, or usually with the support of their family. But certainly it's not been the family's decision, it's been that patient's decision.
The issue as to whether or not patients should receive dialysis when they are incapable of making choices themselves is a difficult issue and we all grapple with it.
Mrs Sullivan: Not solved yet.
Dr Toffelmire: It's certainly not solved. That's probably a social question that you're asking as opposed to a medical question. If socially we're told that patients who can't make their own decisions and patients who have substitute decision-makers who provide the decision are available, then that's a big step that we haven't taken in this province yet.
Mrs Sullivan: If that becomes a necessary part of the protocol, as determined by society in some way or another, presumably the cost will also increase.
Dr Toffelmire: The cost of providing service to the patients who decide not to dialyse?
Mrs Sullivan: No, where there is a substitute consent, where they may not be receiving dialysis now.
Dr Toffelmire: I'm not aware of any cases where the substitute consent or even a patient at the present time has decided not to receive dialysis. In most cases they are receiving dialysis.
The Chair: Mr Wilson, a final question.
Mr Jim Wilson: I just want to know, from either of you, whether it's too simple to say that most patients start on peritoneal and, as their condition deteriorates, end up on haemo.
Dr Toffelmire: Yes, I think that's too simple. As a physician, I would prefer to ask the patient to choose the modality that he finds most fitting with his lifestyle at the time that he's to start dialysis. If that is haemodialysis, he should be on haemodialysis; with peritoneal dialysis, he should be on peritoneal dialysis. Certainly, as a patient goes on to one form or another, there can be problems or complications with that type of dialysis.
For example, in haemodialysis you need a fistula, which is basically an operation that joins an artery to a vein in the arm or the leg so that one of the veins is very large so you can take the large dialysis needles and put them in the vein. This fistula takes some blood away from the hand, for example, that was normally designed by our makers to go to the hand and on occasion, especially with people with vascular disease or diabetics, they don't get enough blood to the tips of their fingers and they run into difficulties there. If they have a vascular problem like that, then one of the options is to close the fistula and put them on the peritoneal dialysis.
Similarly, there are patients who are on peritoneal dialysis for an extended period of time who run into problems; for example, repeated infections or other difficulties where peritoneal dialysis becomes inadequate and therefore they have to move to haemodialysis. Any haemodialysis program requires the capacity to allow flexibility of having patients go from one to the other.
Even a transplant program, patients are not going to maintain their transplants for ever and they're eventually going to go back on a dialysis at some point and those patients must be accommodated in the dialysis unit. There has to be the flexibility of numbers in the haemodialysis and peritoneal dialysis programs to allow for this.
The Chair: We want to thank you both for coming today. This has been extremely helpful for the committee as we start our deliberations. Thank you again. The committee then stands adjourned until 3:30 tomorrow.
The committee adjourned at 1740.