Tuesday 19 April 1994

Dialysis treatment services

Calvin Stiller

Michael Singer

William Clark

David Churchill

Nancy Abbey


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:

Sullivan, Barbara (Halton Centre L) for Mr McGuinty

Waters, Daniel (Muskoka-Georgian Bay/Muskoka-Baie-Georgienne ND) for Mr Martin

Wessenger, Paul (Simcoe Centre ND) for Mr Owens

Also taking part / Autres participants et participantes:

Wessenger, Paul, parliamentary assistant to Minister of Health

Clerk / Greffier: Arnott, Doug

Staff / Personnel: Gardner, Dr Bob, assistant director, Legislative Research Service

The committee met at 1544 in room 151.


Consideration of a matter designated pursuant to standing order 125 relating to dialysis treatment services.

The Vice-Chair (Mr Ron Eddy): Good afternoon, ladies and gentlemen. Welcome to the standing committee on social development, presently holding hearings on standing order 125, the designated matter being dialysis treatment services.


The Vice-Chair: By negotiation, the first presenter will be Dr Calvin Stiller, chief, multiple organ transplant service, University Hospital, London.

Dr Calvin Stiller: I'm Cal Stiller and I run the transplant program at University Hospital in London.

The problem before the committee has to do with the support of patients in chronic renal failure. All of my historical interest is as a nephrologist. My current responsibility, and for some time now, has been that of transplantation.

I co-chaired the task force of the ministry in 1984 which put forward what we obviously unrealistically said was a blueprint for success in terms of organ donation in the 1990s, and I'm here to tell you that we are a dismal failure and it's time that we faced it.

There has historically been a gap between supply and demand with respect to kidneys, and this continues. The important thing for us to recognize today is that none of this should be a surprise to us. We saw it coming; it's predictable; it's predictable in the future.

Obviously, the way to reduce this enormous burden and increase the life and vitality and employability of individuals with kidney failure is to prevent kidney disease, and we don't have any answers for that. There are a couple of things on the horizon which we should be aware of. One third, or 31%, of all patients coming on to dialysis are there by way of the disease diabetes.

A recent international study, in which there were Canadian centres participating, has shown a reduction by 50% of the incidence of the development of kidney disease in those individuals who have diabetes by way of administering insulin on a continuous basis, as opposed to the once- or twice-a-day injection of insulin. That's not going to immediately alleviate the problem, but it's that kind of research which is absolutely critical for us to solve this problem in the long term.

The incidence of chronic rejection in our transplant patients, our half-life of a kidney that we transplant, is only about nine years. Chronic rejection takes 2% to 3% per year. Important new research endeavours that are reducing the incidence of chronic rejection are very important for us to support.

I would just put on the record something that many of you have heard from me on repeated occasions; that is, the dismal record of Canada, and Ontario's no exception, in the support of research. We are virtually putting nothing into the area of health research.

I would point out to you the recent tack-on that Harkin put on the Clinton bill in the US, which is a set-aside fund of 1.5% of all transactions, both those purchasing and those supplying, for the purposes of solving their health care problems with respect to research. Canada should be doing something very much the same.

The only other way for us to deal with this as things currently stand, other than transplantation, is rationing. I don't believe it's acceptable to our population to ration. We have seen this coming, and immediately we have to provide the dialysis stations for these patients. There's no easy method. If you apply rationing, it would have to discriminate on the basis of age and disease, and in my opinion our society would not accept that. In any event, I believe that there are ways we can, in converting our health care system to a rational, evidence-based system, begin to reallocate the kinds of moneys currently spent to have better outcomes.

The optimal treatment for kidney failure is a transplant. Everybody agrees on that. Success rates are in the region of 80%. There's an annual loss of about 2.5% per year after that. The cost of a transplantation is about the same as one year of dialysis.


The organ donation rates in Ontario are about 15 per million per year, giving rise to 25 per million per year. Now, the rate varies in various regions. In southwestern Ontario we have about a 50% greater rate, 23 per million per year. But there are areas in the States -- an area in California, an area in Florida -- that have approached this very aggressively with specific programs and have achieved 35 to 45 per million population. In this week's issue of the Canadian Medical Association Journal, I put forward several of those issues that I think should be considered.

I'm just going to track for you what happens to patients when they go into kidney failure and tell you the kind of effect we could have. About 100 per million population per annum go into kidney failure, and we know those individuals, largely, who are going to. There's an average of about four years of tracking those patients. They require dialysis, and in the time around dialysis -- investigating them, setting them up, training them and into dialysis -- we have a front-end cost, and then about $45,000 per year thereafter.

Twenty-five per million population will receive a cadaver transplant, and that cost is about $40,000 for the transplant and thereafter, all costs being considered, is $7,500. I would point out that the outcome is 80% or better, and the vast majority of those work and, I'd point out, pay taxes. Living donors account for about six per million per year. So overall, of these 100, about 31 will end up with a transplant and 69 will end up on dialysis.

What can we do about this? How can we increase this rate? I'm going to also concentrate on this rate.

We have about 25 per million population per year in terms of kidneys. As I say, in southwestern Ontario we have about a 50% better rate than that, and there are areas in the States that have a donor rate of 35 to 45. That is 70%. So it's conceivable that this could be taken up to 70% if we had an effective cadaveric organ donor program. Why don't we?

I'd like to put to you what the strategic plan for managing chronic renal failure and organ donation and transplantation in Ontario is, a carefully thought-out plan. It has historical precedence. It's faith, hope and charity.

When an individual dies in a hospital in Ontario, and that donor is missed or the relatives aren't approached, what's the significance of that in a hospital? If I were to come in from the outside and look at the hospital records or hospital policies, in orders of priority, these would be the things that would be important: an individual who dies around the time of an operation, an individual who falls out of bed, a needle prick for one of the staff, and a skin rash for a drug reaction. You will find no record of a missed donor. It is of no importance with respect to tracking or auditing in our hospitals in Ontario.

The primary problem with transplantation in this province and in this country is lack of leadership. It's not lack of political leadership; it's lack of leadership from any sector: from the College of Physicians and Surgeons, from the Ontario Medical Association, from the Ministry of Health, from the hospitals, from the physicians. There is no champion for this and there's nobody who says, "We have a resource that's being wasted and we must track it."

Every kidney we lose costs this province $45,000 per year, and for 10 years on dialysis that's half a million dollars. More importantly, it fails to release a patient from the prison of dialysis.

I'm going to talk about another piece of this, and please don't become defensive. I see some of the physical responses being defensive. Nobody needs to be defensive here. We just all need to feel very guilty. Cal Stiller, who has been at the forefront of transplantation for 25 years, is here to say, "Mea culpa; I have failed." It's time we recognized that we have failed. Face up to our problem. Stop living in a dream world.

There's another area, and that is living donation. I want to talk about that because it's something we don't talk about and I think there's a unique opportunity for Ontario to really take a lead. I also think it's going to have a spillover effect with respect to cadaveric donation.

When an individual develops kidney failure -- let's take AD, for example, this being one of the siblings -- they have a potential for donation within that family. AC -- this represents tissue typing -- could get an identical transplant from one of the siblings who is tissue-type identical, or half identical, each getting half of one chromosome from the parent. So there's a one-in-five chance, really, at any time that you'll have a sibling who's identical.

You have virtually a 100% chance that you're going to be able to give to your parent, or your parent to you, if you are compatible by blood group, and that's a critical fact.

At the present time, we have six per million population per year who give a living related donor organ. I'm going to put forward that with some innovation, some real sociomedical innovation and leadership, we can take that to 30. In other words, we can deal with one in three of every individual who comes on to dialysis.

If we don't change, if we stay exactly the same way we are, 25 plus 6, 31 per million population, are the number of kidneys that we can transplant. There are 1,000 new patients who come into kidney failure every year in Ontario. A thousand times $45,000, read it that way: $45 million. Three hundred -- 310 to be exact -- are going to get a transplant.

If we do nothing, over a period of the next four years, that difference will build every year. So over four years we have accumulated about 350 new patients times $45,000 each year. That's the effect if we don't change.


There's a concept I'm going to put forward to you which surfaced from an individual called Felix Rapaport in New York some years ago and has never been explored. I think maybe this is the time to explore it.

Let's assume for the moment that Dr Wilson has a sibling that he wants to give a kidney to and cannot because either there's a positive cross-match or you have an incompatibility with blood group. Let's assume for the moment that I have the same situation: I am prepared to give to one of my siblings but cannot because of incompatibility with blood group or antibodies. I want to give, Jim Wilson wants to give, and we have the opportunity to do something that I call vicarious living-related. In fact, if I'm prepared to give into a donor pool and Jim Wilson is prepared to give into a donor pool, my brother gets transplanted and Jim's brother gets transplanted.

There will be naysayers on that. It is not a barter system. It's taking responsibility for the health and care of our families, being able to express the altruism and love and charity and grasping the faith and hope that fit the other part of that, and allowing us to free those individuals from dialysis, if we did two things: if we put in place a system where leadership is given and we made organ retrieval, the retrieval of living organs from cadaveric donors, a real issue.

If there was a disease from which patients were dying and we had the cure and that serum that cured that patient was available and there was no financial, ethical or logistical reason why we didn't get that serum to the patient to cure that, the College of Physicians and Surgeons, the federal and provincial governments and the OMA would be up in arms, the media would be on it, and we'd have that problem solved.

We have a situation today in which 88% of the population want to donate the organs of their loved ones and in fact two out of every three of those potentials are lost because we don't consider it important enough. If a system as disjointed as the American system can put forward a plan in a region in which they can achieve these kinds of levels -- this isn't pie in the sky; this is what they're achieving -- then in a system like Ontario we should be able to do that.

If you added to that an aggressive living-related program in which patients were truly informed -- I can tell you the patient families in our current system are not informed of either their right to or the relative risks involved. The barriers are not removed. Patients are on dialysis and five or six years later their relatives have found they could have donated. This is not a responsible health care system that allows that to happen.

If those two could be achieved, we could almost reach -- and this is not accounting for the mortality that occurs in this system, because there's a 13% annual death rate in those patients who come into that dialysis program of 1,000 a year -- we in fact could achieve a steady state. I would point out to you that the cost savings involved in that are enormous, but we do not have a system.

The problems, just to finish, are that we have a demand or a need exceeding supply. Chronic renal failure is increasing. Patient numbers exceed the bed numbers. That's the crisis you're dealing with in Toronto, and I'm telling you that it's about to surface in every other community in this province.

The number of new chronic renal failure patients has always exceeded the number of available kidneys for transplantation. Patients in need exceed the number of donor organs. There's no real program for maximizing the number of donors and no effort or capacity to stimulate research into new solutions.

I can tell you that the system is squeezed. There's no rational financing that allows incentives for creativity, and platitudes and hope exceed reality and action. The care of renal failure and transplantation is balkanized with multiple disincentives and barriers to a seamless progression through the stages of optimal treatment. The amount of work and lack of coordination stifle innovation.

I believe the fundamental problem lies in the multisourcing and method of financing of health care. Solutions to the causes of renal failure, including diabetes, immune diseases of the kidney and chronic rejection -- the research needs exceed that amount of support.

I'm going to put forward what I think the solution is. The solution is, face the problem. Stop dreaming that our current system of cadaveric and living donation is going to solve the problem; it's not. There are 3,000 patients on dialysis in Ontario. We transplant 300 a year. Transplantation is rapidly becoming an irrelevant side issue when in fact we know it's the optimal treatment.

The short-term solution is to provide adequate dialysis stations. You cannot say to the patients who are currently facing dialysis, "We're not going to give you dialysis," because frankly, we've known about this problem for the last five years. We had the opportunity to provide for it.

Activate a comprehensive living donor promotion program, starting with the traditional living-related and giving everybody the opportunity, and then introduce a pool exchange and do that on the basis of a well-designed experiment.

Give leadership. Roll out an organ donation program enlisting hospitals, physicians and the public. The mid-term solution is creating a task force. Give them six months to come back with a workable process and organization. I believe that ultimately the only way to look after this is a health maintenance organization equivalent that deals with those individuals who are coming into chronic renal failure. We know who they are and we know what they need.

We cannot allow balkanization of the system which impedes patients from getting to what is the optimum treatment, and that's transplantation. Thank you.

Mr Jim Wilson (Simcoe West): Thank you very much, Dr Stiller. It was an excellent presentation. A two-part question: First, and I think we may have been told this, what's your advice on how many people who have renal failure would be candidates for a transplant each year, and secondly, what percentage?

Your suggestion about a vicarious living-related donor program is very interesting indeed. It somewhat reminds me of the current bone marrow registry.

Dr Stiller: Precisely.

Mr Jim Wilson: That's what the model is, is it?

Dr Stiller: Yes.

Mr Jim Wilson: I just wonder, do people really want to give up kidneys? Bone marrow is one thing; you're extracting some marrow out of the body. But to actually give away an organ seems to me to be something we'd have to do a lot of public education on.

Dr Stiller: I'm amazed at the charity and goodwill of people when presented with a problem and the reality. When you say, "My brother's going to have to be on dialysis -- an average of two and a half years; it could be 10 -- "and I have the opportunity to get that individual before he ever goes to dialysis" -- which means the likelihood of that individual not going into disability and losing his job, but maintaining his role in the home and being able to work -- "I have the opportunity to do that and I know what the statistics are with respect to morbidity and mortality" -- the majority of individuals, when presented with that -- and we have a very clear distinction between the recipient advocate and the donor advocate. They're seen separately. They're counselled. They're seen by a psychiatrist. They're looked after very carefully. The vast majority of them say, "Let me do my part."


Mr Jim Wilson: The first part was, how many people would be candidates?

Dr Stiller: You're going to hear different figures. The way to ask the question is, if you were throwing away 1,000 kidneys a year, how many of the patients would be suitable for transplantation? The answer is, almost all of them, 85% of them. It's been shown in every study looked at that if you have an individual who has a medical risk factor, and it's irrespective of age, the life survival and the level of rehabilitation is better with a transplant than with dialysis. I think that's the answer.

It's because we have such despair with respect to whether a transplant is even likely that they're not even considered. As a consequence, in some programs we have as little as 12% of patients who are on dialysis actually listed on the transplant program.

Mrs Barbara Sullivan (Halton Centre): I'm very interested in this presentation. I think that throughout the hearings with respect to dialysis we've been hearing the underlining of a need for a comprehensive program. This is a different comprehensive program that is being presented so far. We have had some earlier discussion with respect to transplant programs in which the barriers were underlined to a certain extent. I'm wondering what you would see as the barriers to a very aggressive program such as you've suggested.

Dr Stiller: Of course, the barriers on the side of organ donation largely lie in the hospital. It is the failure to identify donors, care for them and approach the family, and there's a variety of reasons for doing that. But I can tell you that if you don't value something, it's not going to be done by people who are overworked. Does that limit patients who have a potential living donor? The answer is no. So why the barriers? It's difficult to know how candid to be; it's not usually thought of as a problem for Cal Stiller.

There are significant barriers. There are barriers that relate to the financing of the support of dialysis versus transplantation, physician income, the role of the tie-in between dialysis and transplantation -- peripheral dialysis units and transplantation. An enormous problem exists with respect to proper education of the patients, making sure that they know their options. Frankly, what happens is that if a patient comes to dialysis, if you refer that patient on for transplantation, there's an enormous amount of work involved in terms of that living-related program of counselling. There are not enough people to do that. There's no identifiable source of funding for that.

The income to the dialysis unit is reduced. The work on the transplant unit is increased. Transplantation is undervalued, frankly, by OMA and by the ministry and the hospital sector. It's considered marginal. It is an enormous cost saving, that's what it is. It's simply a balkanized system. There's nobody who has responsibility for guiding that patient through to the most efficient, most economical outcome. I'm not pointing fingers at anyone; nobody has had responsibility for that. I just think it's time we took it on and did what the patients think we're doing.

Mr Paul Wessenger (Simcoe Centre): Thank you for your presentation. I think I already have the answer to my question, but I'll just confirm it in any event.

You've indicated that basically institutional problems are the major difficulty with respect to having a more successful transplant system. At times we've had people come and say there's a problem with respect to willingness of donors or willingness of families and they've suggested such things as presumed consent and mandatory choice, but I gather your position is that you wouldn't need to look at those aspects if we could solve the institutional problems. Is that correct?

Dr Stiller: What I long ago learned is that what I don't know is an awful lot more than what I know. I don't know whether presumed consent works. It's been tested in different jurisdictions, but no proper control was really established to determine whether presumed consent works. It's worth an experiment and it could be done in a region. It's one of those things in our health care system that we need to move to evidence-based. For so much of what we do, we don't have any evidence that is of benefit, or detriment, for that matter.

You're talking to an optimist, you know, and I have enormous confidence in the goodwill and charity of people if they're given the opportunity. What you have to do is give them the opportunity. The physician has to take the responsibility to identify the donor and counsel the family, or somebody else has to, and move them through that system. We could introduce presumed consent in a properly laid-out, researched protocol and determine once and for all in the North American setting whether it's of benefit, and I think it may be of benefit. But until we do that, there's something else we can do. We can have physicians and hospitals take on the responsibility that they should and give everybody the opportunity to donate.

The Vice-Chair: Thank you very much for your presentation, Dr Stiller.

The next presentation will be by Dr William Clark.


Dr Michael Singer: I wonder if I could go next. I've got a train to catch.

The Vice-Chair: Certainly. Please proceed.

Dr William Clark: I guess it's the rule that nice guys finish last.

Dr Singer: My name's Michael Singer. I'm in the division of nephrology at Queen's University in Kingston. First, I'd like to thank the committee for allowing me to participate in this discussion. Some of the issues you're addressing are certainly a microcosm of the stresses and strains in the health care system.

I would like in my presentation to go over some of the resources I think are necessary for the maintenance of a good dialysis program. I want to use six overheads for this; I think people should have a copy. Some of this information you'll have seen before, at least in the first two overheads.

What I've plotted on this graph is the prevalence of end-stage renal disease in Canada and locally in our Kingston area. The year is on the abscissa and on the ordinate is the number of patients at the end of each year receiving dialysis. You can see that over the last number of years there's been a linear increase in the number of patients receiving dialysis, and I'm sure you're aware or have been told that this is equivalent to between about 10% and 15% per year annualized. Our experience in Kingston is very similar to the national data.

What this kind of data shows is, obviously, that we haven't reached a steady state in terms of our expanding dialysis population, that the input into the system is still exceeding the output or exit from the program. What it doesn't show is that if you look at the incidence or acceptance rate in dialysis, it itself is increasing annually, with the biggest intake occurring in the elderly population.


If you do look at the incidence of dialysis or the acceptance rate, what I've plotted here is the Untied States versus Canada, this being the age-specific incidence of end-stage renal disease therapy. These are 1988 data, but I think the conclusions would be the same if one had access to more recent data. You can see that the United States incidence of end-stage renal disease therapy is greater than that of Canada at all age groups, but the discrepancy is the largest when one looks at the very elderly. In the little inset up here, I've plotted the ratio of Canada to the United States in terms of dialysis. Until the age of roughly 74, it's somewhere between 0.6 and 0.7, which means that in those age groups, we're dialysing about 60% of the number of patients in the United States. When one gets to the 75-plus age group, we're down to almost 35%.

If you assume that the demography of the two countries are not that different and the prevalence of diseases leading to ESRD are similar, clearly we're probably not even meeting the need of our existing end-stage renal disease population. These types of figures, which I know you've seen before, tell us that there's going to be a projected increase in our dialysis population, and that we may not even be meeting the existing need and we're going to need more resources. The question I really want to talk about is, what are the resources you need for a good dialysis or renal program?

With this view in mind, if one looks at the health care system and nephrologists, we've really focused a lot on the technical aspects of dialysis and on survival, really, as the main outcome. But as physicians and nephrologists, we realize that the true goal of a dialysis program, or of an end-stage renal disease program, should really be to try to maximize patient functioning and wellbeing and not merely to just preserve life.

With this view in mind, about two and a half years ago in Kingston, we began to measure patient functioning and wellbeing to see how our patients were doing. In particular, we were interested in those factors that impacted on their functioning: What were the variables that controlled their functioning, and is there something we could do about these variables?

When we looked at our data, we found there were three main variables that really related to patient functioning and wellbeing: the nutritional status of the patients, which is a very important topic in end-stage renal disease; the co-morbidities of these patient were especially important since many or most of our new patients are elderly and have coexisting cardiovascular and/or pulmonary disease and diabetes; and also this factor I call self-care, which really relates to patient autonomy and patient control of their treatment schedules.

As we were doing these studies, we were in the process of setting up a self-care unit in the Belleville area from Kingston. The self-care unit is now operational. This is a unit where patients are dialysed in a non-hospital setting, there's minimal nursing care and there's no physician on site. We found that these patients seemed to be functioning at a better level than our in-centre patients who were maintained within the Kingston General Hospital.

So we embarked on a separate study where we took our self-care patients and we matched them with a group of patients who were not going to self-care but who were similar in age and co-morbidities. We decided to compare the functional status, the functional wellbeing of these patients. We used an instrument called the Rand SF36, a 36-item short form which measures patient wellbeing. It actually measures eight domains of health in these patients, these being the eight domains: It measures physical function, daily activities, role function, mental health, and a whole series of generic domains.

You can see from this graph that our self-care patients, who are in the closed circle, scored much better than our centre patients, who are in the open circles. This was one time point, but we've done this on a number of occasions. It was clear that our self-care patients, even though they had the same co-morbidities and ages as these other patients, did better, felt better and perceived themselves as healthier. We think this relates to patient autonomy and the ability of these patients to have more control over their treatment schedules.

When we looked at this type of data and when we looked at the literature, one can draw up a list of the kind of steps and processes you need if you're going to have a dialysis program that is not just designed to preserve life but is designed to try to improve or maximize the functional status and wellbeing of these patients.

These are the things you need to do: You need to optimize their nutritional status -- very important; you need to pay attention to and treat all the co-morbidities these people have in terms of heart disease, pulmonary disease, diabetes, peripheral vascular disease; and you need a very active rehabilitation program which promotes patient control and autonomy, maintains employment where possible and also maintains the physical activity of these patients.

If you take these kinds of steps, these kinds of processes you need for a successful end-stage renal disease program, these are the types of resources you will need to have such a program. We clearly need dialysis equipment and facilities, but I would think with an emphasis on self-care modalities. We obviously need an adequate complement of nurses, physicians and technical staff, but we also need dietitians, social workers and occupational therapists if we're going to have a successful program.

I think the conclusion is that the dialysis population is expanding and does not appear to be reaching a steady state -- we don't know when it'll reach a steady state in the foreseeable future -- and if the goal of dialysis is really not just to preserve life but to enhance the functioning of these patients, we need these types of resources to maintain such a program. Whether we can afford the opportunity costs for these resources I think is really a decision we have to leave with society.

Mr Jim Wilson: Doctor, thank you very much. Your last statement is exactly what I was thinking of all the way through, because it's come up with each of the presenters: giving the committee and government, society, the choice that we either move ahead and provide the resources for dialysis or we go out and try and get re-elected talking about rationing, is I guess how you'd put it in political terms. I think the public in general is quite educated, particularly families that know someone who requires dialysis.

I guess it's a measure of costs. You talk about the costs we need to put the resources in dialysis, or the cost to society if we don't. Do you have any further comments on that?

Dr Singer: Comments? I don't really have an answer as to where the costs should go. My personal view is that since health care resources are finite, obviously allocation decisions have to be made. I think the only way these can be made is in some public and explicit fashion, personally. There are models out there of processes which have been looked at to do allocation in a public and explicit fashion.

Mr Jim Wilson: So you'd look at something like the Oregon model?

Dr Singer: Yes.

Mr Jim Wilson: And you think the public's ready for that very frank discussion about services and treatments?

Dr Singer: Personally, yes, I think the public is prepared and I think they need to be involved in a public discussion of what we can afford. There is a mismatch between expectations and our resources, and I don't think it's reasonable, as physicians, that we should be making these decisions, and I don't think government, as a proxy for society, should be making them in an implicit fashion. I think this has to be an explicit process.

Mr Jim Wilson: Which is kind of the slope we're on with the delistings, for example.

Dr Singer: Yes. I think delisting is an implicit, not public, process.

Mr Wessenger: Thank you for your presentation. I was particularly interested in the wellbeing, depending on the type of haemodialysis. I know this only relates to haemodialysis, but I wonder if you had any comments with respect to the alternative form of dialysis, which is peritoneal. I realize you haven't done the study, but have any studies been done or do you have any observations about how patients perform under peritoneal dialysis? I understand that for many patients it's a viable option.

Dr Singer: We actually have looked at our peritoneal dialysis population. In Kingston about 50% of our patients are on peritoneal dialysis, some of them are on the cycler and most of them on CAPD, continuous ambulatory peritoneal dialysis. For reasons which are not clear to me, most of our peritoneal dialysis patients, at least in terms of their wellbeing and functioning, are more like our centre patients than like our haemodialysis self-care patients. I don't know if that's patient selection, because on average they're not older than our haemodialysis population and I don't think their co-morbidities are any more extensive than the co-morbidities of our haemodialysis patients. But their scores are comparable to our centre patients and not comparable to our self-care patients.


Mr Wessenger: Would this be true even with respect to the cycler process as well?

Dr Singer: Yes, although in all fairness, part of our cycler program has really been an assisted cycler program to try to keep patients at home who otherwise would have required institutional care.

Mrs Sullivan: I'm very interested in your presentation because I think it's the first time during this series of hearings that we've had a presenter speak about the psychosocial aspects of treatment, although maybe the Kidney Foundation did to a certain extent.

I'm interested that at Kingston you have taken the approach of a health status measurement that really does have a patient focus to it, where one of the measurements is not only patient satisfaction with their life but a measurement of how well they can cope with other aspects of living.

Have you found a difference -- I don't know if this measurement has been done -- with the personal measurement of a dialysis patient, whether in the self-care or in the hospital unit, from the issues that might be associated with self-analysis of a cancer patient, say, or of an AIDS patient? Are there things that are different in the way people would measure their own health status as they're part of a course of treatment? Did you also find a difference if a person did have, say, a pulmonary illness or a cardiovascular illness as well?

Dr Singer: I'm not sure of the first question you're asking. The instrument we're using is a generic instrument, not disease-specific for renal disease. I don't know if this answers your question. The Rand study has a long history in the United States, this instrument development going back probably to the 1970s when they did their health insurance experiment. This instrument is being used mainly in the United States but also now in the UK and parts of Europe for a whole variety of patients with chronic, debilitating diseases. It's really to look at people with chronic illnesses.

What I think is good about is that, as you said, it's a patient report, not of satisfaction, but a patient report of how those patients believe they're functioning and their perceptions of their health. It's been used in patients with HIV, it's been used in patients with arthritis, heart disease etc.

What we're hoping to do, with some people in Ottawa, is to see if we can use this instrument to measure disease burden between groups, if we do a good enough case mix.

Mrs Sullivan: That's what I was wondering.

Dr Singer: When we first started measuring these, we were pretty astounded that some of our patients were scoring as low as symptomatic HIV patients when we looked at the literature, although when we talked to the nurses they really weren't surprised; their perception had been that some of these people actually saw themselves as quite ill.

So we've done this type of study, but what we're also trying to do is incorporate this measure in our general care for these patients. We measure their health status quarterly and put these scores on their flowsheets that we use, and when we have patient conferences we use these scores in addition to their biochemical parameters to try to get a better assessment of how the patients are doing. We're trying to involve everyone in the health care team looking after these patients to use these scores rather than their sort of "gut" impression of how the patients are doing.

We've gotten to the stage where people look at the scores, we've gotten to the stage where people begin to use them to assess the patient, but we don't know yet whether they're still going to be valuable for designing intervention specifically for an individual patient. I think it's going to take a few years to know whether that's going to be a useful tool or not.

I don't know if this answers your question. There are a number of disease-specific questionnaires that have been designed for patients with renal disease. We decided to use a generic instrument instead.

Mrs Sullivan: That's interesting. Oh, I'm going to get away with another question. Have you discovered any difference in the self-definition if a person does have a co-morbidity?

Dr Singer: Do you mean, are they worse if they have a co-morbidity?

Mrs Sullivan: Yes, will they identify themselves as being worse.

Dr Singer: If you look at the scores and do some a modelling process where you fit in the variables and look at some sort of regression analysis, you'll find that the co-morbidities are negative predictors, so the score will be dragged down by the co-morbidity and obviously by the severity of the co-morbidity. Ischaemic heart disease, peripheral vascular disease, diabetes with complications will give that person a lower score than what they would have achieved had they not had those co-morbidities.

What has really been interesting with these patients is that their mental health scores have been really very good. If I had to predict whether we would need a psychiatrist, let's say, resident in our unit, I would say definitely not. Most of these people are very well psychologically adjusted.

If I had to put our money on a resource person other than the nurses and technical staff, I think it would be social workers and occupational therapists. If we could do little things to make these people's lives a lot easier, in addition to self-care and help them stay within the community, I think that would make the biggest impact.

Mrs Sullivan: That was where I was going next. Have you identified any other areas where you don't have the human resources or other resources in place?

Dr Singer: Definitely social workers, dietitians and occupational therapists. I think we're really quite deficient in our resources.

Mr Jim Wilson: Can I just tag on to that? In other areas, with the patients in my riding, for example, the number one problem is the physical toll and stress and strain of driving or being driven to the centre. Social workers in my county and the Kidney Foundation and everybody tries to do something to alleviate that and get them volunteer drivers.

Dr Singer: You know what's fascinating about the self-care patients? We started measuring these scores while they were training in Kingston to go to Belleville, and there was a delay in opening Belleville, so we had these measured for probably six months before they went to Belleville, and then we followed them for six months after they actually went to Belleville. There was a small enhancement of their scores when they physically relocated, but the great bulk of the difference was already there before they relocated. So it wasn't just the driving; I think it's more than that. If you talk to home haemo patients, it's this control they had. Even when they were training in our unit in Kingston to relocate to Belleville, they still had more control, still had more involvement in their process of care, and there was a camaraderie among the group and much more understanding of the physiology and the whole process of dialysis. I think that's what was responsible for most of their feeling better. There was, as I mentioned, a small enhancement when they physically relocated, so there wasn't the concern about driving, but that didn't explain most of it.

The Vice-Chair: Thank you for presentation.



The Vice-Chair: The next presenter is Dr William Clark. Thank you, Doctor, for agreeing to have Dr Stiller and Dr Singer precede you.

Dr William Clark: What I'd like to do is try to keep you awake for the next 10 minutes, but I'm going to barrage you with a few numbers. I thought I would just give you an overview of the region we actually serve, the southwestern Ontario region, and let you see the number problems we currently have, because I suspect our number problems are very similar to everyone else's -- this is going to be a bit repetitive, I'm sure, for many of you -- and then briefly allude to some of my beliefs about possible methods of dealing with the shortcomings.

This is the region. As you can see, it's a rather large geographical region, southwestern Ontario. There are about 1.4 million people within this region, and they're serviced by the London health science centre and also the Windsor unit. The London health science centre is a rationalized service with three hospitals, one providing transplantation for the entire region, one providing self-care facilities for the entire region. So there's a satellite unit in Hanover, a satellite self-care unit in Sarnia and also a satellite self-care unit in London -- these are units which don't have physicians on site who actually provide dialysis for patients -- as well as in-centre units in London and in Windsor.

In terms of where we fit, if we look at per million in terms of current end-stage renal failure, we have 601 patients per million population in end-stage renal failure. The Canadian average is about 518, the US average is 661, and, as you can see, Japan is 877. I guess the rising level of affluence -- at least, one can correlate end-stage renal failure with economic indicators and they correlate well, in terms of recognition of the problem and treatment.

If we are to look at where we fit in terms of Canada, this is data from 1992 for Canada and this is 1994 for us, so we probably look a little better. Although we may actually have slightly higher numbers per million in terms of the total end-stage renal failure, we transplant more than anyone else in the world as a jurisdiction; we have a greater number of transplants than any other country in the world and any other jurisdiction within this country. We have 300 patients per million who are successfully transplanted, and, as you can see, we have 301 on dialysis. So Dr Stiller, although he has been failing, has been failing reasonably well.

The reason we picked 1990 and 1994 is that in 1990, the ministry did address the problem of dialysis within our region as phase 2 of a three-part program which was trying to deal with the shortfall in treatment for end-stage renal failure. At that time, several of the issues were addressed in our region. I will show you the recommendations of that report, which was projected until 1995, and what has actually happened in our region during that period of time, so that possibly we can get some idea as to where the current problem is.

I must say the ministry has been aware, as I'm sure it has been aware throughout, of the problems we're facing and has tried to address them. The last formal attempt beyond the life support program was in 1990. What you can see is that the percentage of our population has changed: The percentage who have transplants is less, although we're still greater than the Canadian average, and the percentage on dialysis is slightly more, although it's greater in 1994 than 1990, and there's been a marked rise in the number of patients who are on peritoneal dialysis, but we are not at the Canadian average for our region.

In terms of the report, this is the report that was constructed for the ministry by CONSUP, which is an independent agency report, to deal with recommendations about our region in 1990. These were the chief recommendations: We were to actually enhance our in-centre dialysis stations, we were to increase the rate of transplantation, we were to increase the rate of self-care dialysis, and we were also to increase the number of patients on peritoneal dialysis.

If we were to look at what it recommended in 1990 -- I'll show you what our data are from 1990 to 1994, and you can decide how well we have done. As you can see, we probably have not done that well. We had 51 stations created as of 1990, and there has been no further creation of new stations for in-centre dialysis, so we still have 51. The in-centre population has grown from 202 to 251, which puts us slightly above the optimum, or at the optimum, I guess, for occupancy. We can discuss that, I suppose, briefly.

There has been an increased rate of transplant surgery. There actually hasn't; we have fewer patients now who are transplanted. It's a simplified view to look at transplantation as a success model, because in 10 years you've lost about 40% of those grafts and those patients re-enter the dialysis or end-stage renal failure program again and require further redress. It's a nice simplification to think you can provide a form of therapy and the patient disappears, but in reality that does not occur at the current time, relative to our current technology.

What's actually happened is that as our transplant rate has declined, the failure rate of the patients we have in the transplant pool is exceeding our entry rate into transplantation. There has been a universal, let us say across the western world, major decline in donor availability. This is not peculiar to our constituency; it's peculiar to every constituency in which transplantation occurs. There is a variety of explanations: seatbelt legislation, RIDE programs -- the availability of previous donors -- the growth of intensive care units. It's a very complex issue. Anyway, the rate is greatly down.

What about self-care modalities? We've had a major increase in self-care from 1990 to 1994, a doubling actually, in patients who are dialysing in self-care centres, out-of-hospital haemodialysis, and we've expanded our peritoneal program, almost tripling it in that time period.

In terms of dealing with the issues we've been able to deal with, we have dealt with the report.

The interesting thing is that when one looks at the report, it estimates where we'll be in 1995, its prediction in 1990. I'll just transpose those numbers so they can be more readily seen. The CONSUP report in 1990 suggested that by 1995 we'd have 705 patients with end-stage renal failure, and actually we have 841. It suggested we would have 402 transplants; we actually have 420. It suggested we would have 303 patients on dialysis; we have 421, and of those, 305 are on haemodialysis.

So you can see we are way ahead of our schedule for 1995, relative to their projection numbers. At the time they projected, we indicated our growth rate was 10%. They took an 8% growth rate, even though we told them at the time that we had always grown, in the previous 10 years, more than 10% per annum. You can see the shortfall that does occur when you do that.

This is just an idea of where patients are in terms of dialysis between 1990 and 1994. There's been a great increase in terms of peritoneal dialysis, self-care dialysis and home dialysis in the patients who are out-of-hospital and being dialysed from 1990 to 1994; as you can see, 77 to 170. But we still have had an increase in in-centre, because we are dialysing an older population with co-morbidity, who have a ischaemic heart disease and diabetic complications that mean in-centre is usually the only choice for these patients. There's a certain reality index we can't escape from.

In terms of our current annualized growth rate, we are growing at about 12.5% per annum in terms of the dialysis population. The majority of this is in out-of-hospital dialysis, which is in the more efficient, cheaper methods that give the patients a greater sense of independence and I think probably a greater sense of wellbeing and, probably, productivity in society.

Our current occupancy rate is five. You can have six patients per station in an in-centre haemodialysis unit. That means you would have no capacity to deal with acute renal failure and the other exigencies which occur in an in-hospital centre. As one of our hospitals, which I belong to, is a major trauma centre, we use at least one in six slots just to treat acute renal failure. That's not included in these numbers, but we use the personnel and the equipment to provide for that service as well.

If we're to look at the problem in terms of why there's a shortfall and why we haven't dealt with the growth -- the ministry has provided a program to deal with growth, called the life support funding program, and here's why I think it doesn't work. Here's a perfect example. Here's our budget from 1992-93 for our institution, and what you can see is that cardiovascular surgery, unfortunately, didn't fulfil its quota. We all have quotas we fulfil and actually exceed, and we get more funding.

The problem with this formula is that it occurs a year after you've done things. You've got to deal with the growth in the first year and then you get the money the year later, but the money is levered against other programs. The life support programs are: cardiovascular surgery, intraocular lens implants -- I'm not sure why that's a life support facility, but there you go -- end-stage renal disease, TPN, neonatal intensive care, oncology chemotherapy, and hip and knee replacements are also life support.


Anyway, these programs generate numbers. As you can see, our program, the dialysis program, generated a major increase in activity. It had, I think, about a $584,000 expectation to deal with that growth in the previous year. We needed more machines, we needed nurses, we needed social workers, dieticians, pharmacists, in other words, parts of these people. We needed the funding for them to deal with this expansion.

As you can see, because the cardiovascular program was down, they netted out against our program and therefore we received $200,000 less. Then, because the ministry had a formula proration at 87%, that was reduced again. Then in terms of where we got within the institution net, we were netted out against each program that was a plus, so we received about half of the funding for the growth we'd already had.

As you can see, this formula doesn't work but it is the current, the only way of growth. It's better than having no formula, and I certainly would say that, but it will never work, it will never address growth in an appropriate fashion, but that's clearly what goes on. It is an attempt, but I don't think it will work.

I think if we were to say, how can we address the problems, obviously it would be nice for us to change society to have answers to transplant everyone, to have a perfect formula for maintaining the transplant, for not requiring dialysis facilities etc, but I think, although those things are wonderful, at the present they're not currently tenable.

What is tenable is that we need an accurate, ongoing patient registry. We don't have one. We need to know what's on the waiting list, what we can expect, how we can plan for each region so we can do this sensibly.

We do know that in the last 10 years, from looking at our own data, there's a 40% spontaneous generation rate of patients; in other words, the patients are not being followed by the centre, they appear in end-stage renal failure and we have to provide treatment for them. I think that's pretty well the same as the American data which have tried to look at that problem.

The growth funding designated directly to specific programs would help a tremendous amount. In other words, if we designate the money, we don't lever it, as it is currently done, against other programs, because if you have growth and you don't fund it, then you essentially can't deal -- you have to ration out your treatment in the following year.

We need really a consensus conference so we can get the people who want to express their beliefs about what's the optimal ratio of patients for dialysis stations, what's the optimal ratio of patients who should be treated in this particular constituency. We need to look at the methods to increase organ availability, because there's no doubt that we are facing a major shortfall just like the rest of the western world and we need to address that. Hopefully, a consensus conference could deal with those issues.

Unlike Dr Stiller and Dr Singer, if I had to place my money someplace in terms of where it's not being placed right now, I would place it in trying to prevent people from getting into renal failure. I think that, yes, transplantation is a very efficient and cheap method, but a cheaper method yet is to prevent people from getting there.

Certainly there have been major advances in the last 10 years in certain areas and this has required research funding and, as Dr Stiller indicates, we need to invest in this area. I think it's an important area and it's not being adequately invested in at all.

The two changes that have occurred in the diabetic population are the realization that ACE inhibitor therapy can reduce the decline in renal function and the realization that protein restriction can also decrease the decline in the DCCT study.

Three major studies have indicated ways of reducing the dialysis patients entering end-stage renal therapy from diabetes. I would suspect that if we looked at the changes we should see a 50% reduction in 10 years' time in those patients entering end-stage renal failure programs, and they are the current majority.

Research into preventive disease will actually have some impact, but we need to look at other avenues in that area as well and, really, the funding is not very extensive in that area at all. It's actually minimal.

The other thing I would just recommend briefly as a little plug is, this is the way we organize our renal administrative program at our own unit. We're actually going to do this in the London region itself, so that we include patients as well as patient coordinators and the kidney foundation representatives on the committee. We meet on a monthly basis to discuss the shortfalls in the program and how to plan for them, what kind of equipment we need, what is the best etc, how we can improve the conditions of the patients in the unit. We've had the opportunity to actually have access to these individuals and we found it a very useful way.

Certainly, if one was to direct funding, one might recommend that we develop units which are responsive to the local programs, that actually that is their major focus and that they do have patient input and input from the kidney foundation, so there would be an appropriate balance.

Mrs Sullivan: I thought that, first of all, the information you provided us with respect to the projections done four years ago and the actuality in terms of case load and treatment modalities was very interesting. I want to go back over those figures.

In the meantime, when you mention the life-support funding and looking at the deficiencies in the existing funding system, has there been or has anyone put forward a disease-specific funding formula that would eliminate that kind of competitive nature for funding within a specialty hospital, whether it's disease-specific or program-specific?

Dr Clark: I must say, I'm not aware of that. I'm sure that some of the people from the ministry would be more familiar because I'm sure they've gone over this. I'm sure they're aware that this formula doesn't work.

This is an attempt to rationally deal with the problem of how you provide economic resources to units that compete with one another for those resources. Obviously the answer is there's never enough, so they've attempted to try to lever the program. The reality, though, with end-stage renal failure is that we aren't falsifying the data. The people are there.

We are lower than the US, we are lower than Japan, we are lower than Switzerland, we are higher than other countries, and it probably does reflect to a large extent our level of affluence as a nation in terms of providing restrictions within the life-support funding, how much is there. But I think really, if we're going to say that we are going to deal with this problem rationally over a long period of time, the long-term solution is obviously research and prevention of the numbers going into end-stage renal failure. I think that may be achievable over the next 20 years.

The short-term solutions are obviously to improve the rate of transplantation and to have a mature and adjusted formula for funding programs directly rather than to try to have the physician ration sort of implicitly by saying, "We're not going to give you the funding for this," so you start to drop your age ranges, you start to become disease-specific, you start to do things that are not appropriate or right.

But when the resources are limited, you don't have -- at the end of the spectrum, you're forced to make those decisions. As I think was indicated, it's an unpleasant method of dealing with health care. and I think a lot of physicians are not very interested in doing that. They would rather bring the system to its knees in a bankrupt fashion than to implicitly ration.

Mrs Sullivan: You mentioned the need for emphasis on preventive research. Are there any prevention programs in place now and how are they evaluated?

Dr Clark: There have been no economic incentives for prevention programs. Individual physicians and groups are obviously doing their own preventive treatment with their patient programs, but there has been no formalized addressing of this. I suspect that if you look throughout the province, there will be wide disparities in accessibility and types of therapy. But the knowledge is available.

Mrs Sullivan: Is this one area that ICES is looking at, do you know?

Dr Clark: I don't know if ICES is looking at it. It would be interesting if they did. I think David Naylor could do a very interesting study on this.

Mr Jim Wilson: On that latter point, I was thinking it probably should be one of the recommendations of this committee, to get Dr Naylor to look at it.

Dr Clark, thank you for your presentation. Can we go back to your penultimate overhead there? I had two questions: First of all, I guess to research, if you don't mind, could we get a copy of the 1990 CONSUP report that Dr Clark referred to for southwestern Ontario? That's one I haven't read.

Dr Clark: It is available, actually. I'm sorry, I should have brought it.


Mr Jim Wilson: They'll grab it for us, I think. Bob is great at performing miracles at the last minute.

Dr Clark: Is this what you wanted?

Mr Jim Wilson: Yes, that's it: 40% spontaneous generation. I know you gave a brief explanation but I kind of missed it in my mind. What does that mean?

Dr Clark: What happens really is that in programs where we follow patients for up to 10 years before they enter an end-stage renal failure modality, you think you're seeing the bulk, but still, we've looked at our last 10 years and we find that 40% of the patients appeared spontaneously -- in other words, unbeknownst to the nephrologist -- requiring end-stage renal therapy within a month or so. Even with planning, we're going to have a problem with spontaneous generation, although I suspect that part of that is an educational phenomenon too at the level of family physicians and the widespread geographical area that we serve, although I suspect Toronto may have the same numbers.

Mr Jim Wilson: It seems to me 40% is pretty high to be thrust upon the system from time to time.

Dr Clark: It is. It happens every year, and we anticipate it. But yes, if we had preventive programs, I suspect that number would decline. We don't have formalized programs that, say, are involved in prevention, but I think with time that will change.

Mr Jim Wilson: Life-support program: Can you give me a better feel for -- I understand how you sort of end up with 50-cent dollars, or almost 50-cent dollars. I understand the mathematics of it. But the leveraging that goes on, are you specifically told by administrators as the year goes on -- I need this simplified -- somebody's over budget, somebody's under budget, "You're getting over budget"? How does it work?

Dr Clark: Basically, with the renal administrative committee that we do have, we meet with them every month and they tell us any problems they're having in terms of funding. They immediately try to pass on any economic difficulties, which is understandable, to us, to let us know where we're going.

They indicated to us this year that they hadn't received the life-support funding and their projection was that because they were falling short in the cardiovascular, we would probably only get 50%. So somehow or other we had to make other savings or changes in our program to fund it.

Mr Jim Wilson: How does that translate in layman's terms on the patients you see? Are they denied treatment? Is treatment delayed?

Dr Clark: I think what we do is we seek to provide the cheapest method of treatment. It may not be the most appropriate for that individual but it's the difference between surviving and not surviving. As you get pushed down economically, your choices are a little more difficult.

You can't say, "Gosh, it would be nice for these patients, because they have ischaemic heart disease, they're diabetic and they're 75, that they should be on an in-centre haemodialysis program," because they're not going to do very well with PD. But no, we will do that, or encourage them to self-care. In other words --

Mr Jim Wilson: You try to find them something.

Dr Clark: We will try to find them something that's cheaper.

Mr Jim Wilson: Even if it's not the most appropriate for them.

Dr Clark: Even if it isn't the most appropriate. I think the most appropriate treatment is the one that patients choose themselves, because they are the best judge of their own sense of what they wish to do and what they can do. I think that has been found repeatedly.

Mr Jim Wilson: Just one other very quick question. In all of this, you talked about your occupancy rate being five. Do you have any room for travellers, any travellers' clinic?

Dr Clark: The one in six is where we have room for the traveller and where we have the room for the acute renal failure. But our acute renal failure burden --

Mr Jim Wilson: Is high.

Dr Clark: -- is high. Actually, I think we have slightly more trauma in our region. I'm not sure why. Maybe the 401 curve wasn't built properly near our community.

Mr Jim Wilson: I won't touch that.

Dr Clark: But we do have a higher trauma rate than the rest of the province. So we're busy using that one in six for acute renal failure.

Yes, we can accommodate people from other centres, but it is with decreasing frequency and ability that we can do that, through time. But we will try because we think it's very important to try to improve the quality of life of these people who suffer from end-stage renal failure, and it is nice for them to have some mobility occasionally to travel to other centres.

Mr Wessenger: Thank you very much for your presentation. I was interested in your comment when you said that the patients do get treatment but not necessarily the most ideal type of dialysis. I'd just like to follow that up because I understand in other jurisdictions -- for example, peritoneal dialysis is much more popular in the Scandinavian countries and northern Europe than it is in North America. Do you think that is not a medical choice, or do you think that is an economic choice?

Dr Clark: I think it depends on the country and it depends upon the enthusiasm and the experience of the centre. There are a lot of variables. Toronto probably has the highest PD rate in the world, I would think, and that probably represents economic decisions as well as some major enthusiasm and early planning for that as a major modality.

Who has the best selection? I think the centre that canvasses its patient population and asks them if they are getting the treatment that they desire and that is best for their quality of life has the best mix.

Mr Wessenger: Right. So basically you're indicating that in your area the patients are not necessarily getting their treatment of choice.

Dr Clark: I think it's becoming more difficult for that to occur. I think there has been an attempt by the ministry to address this, but we obviously need another attempt right now.

Mr Wessenger: Right. If I might just follow up one other point you made, you indicated you felt that in the longer term we should be able to reduce the level of haemodialysis and peritoneal dialysis in future as a result of prevention measures. You indicated about a 10-year time frame. Is that what you --

Dr Clark: I think realistically we're looking at a 10-year time frame. If you're looking at intervening with diabetes and making a major impact, you have to understand that for the diabetic, it's a mean time of about 18 years for him to get the diabetes and to end up in end-stage renal failure. Now, the other part of the corollary, the age-onset diabetic, probably may suffer a similar course, although it's less well studied.

We're going to have to look at the studies in the insulin-requiring diabetic and see if they will reflect in the non-insulin-requiring diabetic. There's some suspicion that they will, and I would think if you intervene, you're looking at probably a 10-year time period before you're going to see a major impact.

I think each year you're going to have an increasing impact in terms of reduction in entry, which is really tremendous, because the diabetic population has created an epidemic in the United States and the rest of the western world about end-stage renal failure facilities. That has been a major add-in in the last 10 years that wasn't there before.

Yes, it's providing a quality of survival for these patients, but if it could be avoided, I think it would certainly be desirable for those people in terms of the quality of life.

The Vice-Chair: Thank you for your presentation, Dr Clark. Mr Gardner would like to speak for a moment about his summary.

Dr Bob Gardner: Members will see that I've given another addition to the summary of testimony. This includes the witnesses from yesterday. I wouldn't normally do that. It's a fairly rough version of it -- I haven't yet seen the Hansard, of course -- but there were some new ideas from yesterday, and witnesses did address some of the issues that members have been concerned with, quite clearly. I wanted to get that in your hands as you consider your instructions to me for the report.

You'll see that the new material from yesterday in the summary is shaded. The other thing that the clerk is going to hand out now is a series of questions that members may consider, again in giving instructions to me on the report, so if you could look at them and consider that.

Finally, Mr Wilson asked me to find out some information on the situation in British Columbia and Nova Scotia. I understand that Ms Abbey will also be telling us about that issue. I did speak to the coordinators in both provinces and I do have information. Perhaps I'll wait until we have her testimony and then I can add any additional stuff that I got today. I didn't have a chance to write that up. I can do that tomorrow for members.

Mr Jim Wilson: If I may just a comment for a minute, I want to thank Mr Gardner for extremely prompt attention to his reporting to this committee. I appreciate that.

I think the agreement -- I just want to check with you, Mr Chairman, and with the clerk -- is that on Monday we have an informal meeting to go over the report and talk with research, and again next Tuesday. Can we just get that clarified, what was decided in the subcommittee?

The Vice-Chair: Could you confirm that?

Clerk of the Committee (Mr Doug Arnott): I understood from the Chair that he was expecting the full committee would meet again next Tuesday, and that on Monday there would be a subcommittee meeting if required.

Mr Jim Wilson: I thought Monday we were going to look at sort of a preliminary draft of a report. Have I got that wrong?

Mr Wessenger: If I might just give my recollection here, my recollection was that there would be a meeting at 3:30 on Monday of the subcommittee at which other members could be present, and we would informally look at the report. That was my understanding.

Mr Jim Wilson: Oh, okay. Fine. I think you're right, Mr Wessenger. I have to leave at 5:20 to go to a crime task force, so I want to tell Ms Abbey that I appreciate her presenting this, and Dr Churchill, and I'll be sure to catch the Hansards.


Dr Gardner: Again, if I may, the only thing I would say on the Monday schedule is that I can do whatever members wish by Monday but, on the other hand, members have not yet indicated what they want in the report. I can put together the obvious stuff, but that won't be your comments on what you've heard from witnesses and your recommendations. That may be what you wish to do on Monday, is have that be when you'll first kick that around. That's fine by me. But in terms of what you want me to be doing between now and then, I will need some further instruction.

The Vice-Chair: Fine. Thank you for your report.


The Vice-Chair: The next presentation will be made by Dr Churchill. Could you come forward, please, introduce yourself and proceed with your presentation when you're ready. Welcome.

Dr David Churchill: I'm David Churchill and I'm the director of the division of nephrology at McMaster University. I know it's been a long afternoon and I'll attempt to be brief and perhaps spend more time responding to questions.

The regional nephrology program at St Joseph's supplies end-stage renal failure care for about 1.2 million people. Our dialysis services include hospital-based haemodialysis, self-care, home haemodialysis and peritoneal dialysis. We also supply the transplant backup for the dialysis units at St Catharines and Kitchener-Waterloo.

In our own hospital we have 20 stations in our hospital haemodialysis unit. We operate six days a week, 7 in the morning till almost midnight. Each of the machines, as Dr Clark has indicated, can treat six patients per week or three patients per day.

What I thought I would do to start off would be to give a snapshot of what happened last Monday. We have a capacity for treating 60 patients and we treated 67 patients on that day. The way we were able to do that was to open up an infection control area that's usually reserved for patients with dangerous infections and treat three patients there. We also opened an isolated station that had poor nursing monitoring. We had actually abandoned it, but we had to reopen that. We also had to take a machine to a patient's room and have one-on-one nursing, plus another treatment in an intensive care unit. So we treated 67 patients when we have an official capacity of 60.

On top of that, we had two more requests that same day for dialysis. One was a 56-year-old lady who had complications of cancer chemotherapy and the other was a request from Brantford to dialyse an 89-year-old gentleman who's one of these 40% who just appear. Fortunately, the lady with the cancer-induced renal failure had a spontaneous recovery and the elderly gentleman decided not to have dialysis.

If one or both of those patients had required dialysis -- rationing isn't tomorrow, rationing would have been that day, and it wouldn't have been explicit; we would have been rationing as physicians and as an institution and finding some way to explain away to relatives why we couldn't treat that particular patient. So rationing is here and we do have a problem. The planning's on a day-to-day basis and we're very frightened of what's going to happen the next day.

I've attached to the back and labelled table 1 an outline of what has happened at St Joseph's Hospital since 1981. These are data from the Canadian Organ Replacement Register. If you look at the very first line, under "Dialysis Units," you can see that our hospital haemodialysis population has grown from 47 patients to 111. The home haemodialysis program has shrunk; it's gone from 39 down to 13 patients. It's a very small program at this time. Our self-care haemodialysis group has increased from 18 to 60 patients.

Overall, our haemodialysis population has increased from 104 patients in 1981 to 184 patients in 1993. If you look at the second subtotal, titled "Total PD," the total peritoneal dialysis population has gone from 60 to 95. Finally, we have our total dialysis population, which has grown from 164 to 279 patients over this time.

There are a couple of alarming trends. If you look at "New Patients" and follow the line along from 1981, you can see 52, 59, 57, so stable at 50 to 60 new patients per year. Then, in 1991, we have an incredible increase which we thought was a fluke, but we increase to 90 new patients per year, and it has been stable at 90 new patients per year. The early results in 1994 suggest it'll be at least that, if not more.

As far as transplants are concerned, if you look just below the shaded line towards the bottom, you can see the number of transplants performed. In 1981 it was 22. We quickly went up to about 40, and it has stayed stable at 40 transplants per year. Of even greater concern is that we had 20 patients last year who returned to dialysis, having failed transplant. The net gain from transplantation in our area was only 20 patients, despite the fact that we're taking in 90 new patients per year. We have a real problem.

The next thing we did was to say, how are we going to deal with this? What is the future going to hold for us in Hamilton-Wentworth and the surrounding areas? What we did was to get demographic data on the referral population in terms of its age structure. From that one can estimate, based on age-specific rates of renal failure, the renal failure rate for that group. We also have age-specific death rates. We have entry into the program and we have exit from the program. Transplantation is not going to be very much of a net gain.

By doing that, we are able to calculate, using conservative data, that we would probably plateau at about 380 patients at the end of 1996. We have to find some way of treating a net increase of an additional 100 patients over the next three years, and transplantation's not the answer to that growth.

As far as transplantation is concerned, I think Dr Stiller has spoken very eloquently about transplantation. I have little to add, although I'm far more optimistic about presumed consent than he is.

The other thing that we have done and have been not pioneers but certainly leaders in the area in Canada is that we have an aggressive program of transplanting from living, emotionally related donors, from spouses. Probably half of our living donors next door will be non-related living donors, and it's a very aggressive and a very emotionally trying process.

The other thing that's curious, and Dr Stiller alluded to it, is that recently the central tariff committee of the OMA has made recommendations about changes in the fee structure. One of the fees that they have recommended reducing is the fee for medical supervision of renal transplantation, and it really flies in the face of reality that one should provide incentives rather than disincentives for what is truly a cost-effective program.

Let me focus more on dialysis because that's where I spend most of my time. As some of the questioners have indicated, there are two basic forms of dialysis: haemodialysis and peritoneal dialysis. Basically there is no difference in survival between these two major types of dialysis.

As far as quality of life is concerned, there have been many studies done addressing quality of life and there is in fact no difference in quality of life once one adjusts for co-morbid conditions between these various dialysis modalities. On the other hand, transplantation is clearly a treatment which provides a much superior quality of life.

We did a fully allocated costing analysis of costs at St Joseph's Hospital in 1990, and these data are currently under review at the Annals of Internal Medicine. The data that we have I've listed on page 6. It indicates that the most cost-effective modality by far is home haemodialysis, a modality that is shrinking in terms of its utilization.

CAPD, or peritoneal dialysis, costs about $33,000 in our hospital, self-care haemodialysis $42,000 and hospital haemodialysis is by far and away the most expensive, at $57,000 per patient per year. In our program we try very hard to have people on home dialysis therapies that are more cost-effective, but yet we still have 43% of our patients on hospital haemodialysis.

As far as home haemodialysis is concerned, it has declined. There have been a number of reasons for it. One reason is that our patient mix is different. We have a lot of older patients with more illness and they're not stable enough to be at home. The second reason is that many of the patients who would have gone on home haemodialysis are now on home peritoneal dialysis. A third reason is that many people are unwilling to take a machine into their home -- it brings the illness into their home -- and have elected to go with self-care dialysis, which can be done in a non-hospital facility.


Another problem has been that we've been unable to get capital funding to buy new and modern haemodialysis units for the home haemodialysis program. What was happening was that we had the cheapest machines and the least effective membranes in the home. Most of us felt that our best and most highly motivated patients should not be exposed to the least efficient form of technology. I think that's something we can change.

The other thing that we've done is try to broaden the criteria for self-care dialysis. Initially patients had to be able to do everything for themselves in a manner similar to home haemodialysis patients. We then realized we could have some patients who needed a little bit more help, and they were called limited care patients. Then we had other patients who wouldn't do anything or couldn't do anything for themselves but were very stable.

What we did was we lumped them altogether and we called the new unit the progressive care unit. We have a spectrum of care, from total care for stable patients all the way over to true self-care dialysis. That worked pretty well and we increased our numbers, and this was in an out-of-hospital site.

Our next problem was we had some people who were able to go to this unit and who were stable and yet would come into the haemodialysis unit and say: "There is no way I'm going to give consent to go elsewhere. It's nice here. I have lots of nurses taking care of me. I refuse to sign the consent."

What we did then was to move our progressive care dialysis unit back into the hospital, in an area which simulates an out-of-hospital environment, and now that constraint no longer exists. We simply say, "You are allocated for treatment to area B," which is our progressive care unit, which is far more cost-effective because we have fewer staff there. We've worked very, very hard at doing that.

CAPD is a very cost-effective modality as well. The problem is there's a very high failure rate. I've just indicated at the bottom of page 7 that we perhaps should consider looking more seriously at cycler therapy, which may improve the success rate, albeit at a cost which is somewhat higher than CAPD, but certainly a lot lower than the cost of transferring that patient back to hospital-based haemodialysis.

On the last page I've listed a number of specific recommendations, which are obviously personal opinions.

The first is that kidney transplantation is the most cost-effective form of treatment and should be encouraged. But I think to feel that one can transplant oneself out of the dialysis dilemma is really deluding oneself. It's not the answer to the dialysis problem. We should encourage it, we should be very aggressive about it, but the dialysis problem will not go away.

Legislation regarding presumed consent must be seriously considered, and I think it would increase the supply of cadaver kidneys.

I think the recommendations from committees such as the OMA tariff committee which introduce a disincentive for cost-effective treatment should be reviewed, but I'm not sure exactly who should review them. They appear to be responsible to very few people.

I agree with Dr Clark that strategic planning for dialysis services should be on a regional basis. We've tried, in a very amateurish way, to get all of southwestern Ontario together to do that, but we really need a secretariat and a way of managing this.

Another practice which hasn't been touched upon deals with the life support. Some hospitals cap their dialysis programs and they say, "Enough's enough. We've spent all our money," and even though patients are supposed to be dialysed in their regions, they then become a burden on other hospitals that haven't capped their programs. It's a very sore point.

I think we should have a special funding mechanism for home haemodialysis equipment which is outside the hospital funding. I think we should look at developing these progressive care dialysis units because I think it will allow us to deal with the growth of dialysis.

Finally, if the demand for dialysis treatment is greater than the resources, and rationalization has to be dealt with, then this has to be an explicit, open process with full responsibility taken by society, whether it's by the government being the proxy for society or whatever. But it has to be open. It cannot be implicit; it cannot be forced on physicians or individual hospitals. Thank you very much for your time.

The Vice-Chair: Thank you. Mr Waters.

Mr Daniel Waters (Muskoka-Georgian Bay): I was going to actually ask Mr Clark and then he got away on me. I'm going to ask you because you brought up again this 40% of people -- you brought it up in a different way. I forget how many people showed all of a sudden in that one graph. In the one chart you jumped from 62 to 93 in one year. Then in the body you say that you have done some planning for 1996. What happens if next year you have another jump?

I guess I'm wondering, this 40% of people or whatever the percentage is in your case, how do we get a handle on that? Is it people who are slipping through the system, people who are in the system and who are not detecting the problem early enough so that we can plan for it? There's got to be something. In your case, when you get talking about that number of people, I was curious where it came from. You said you tried to track them. Were they people who came into your community? Were they people who were always in the community? What was the story?

Dr Churchill: Your question has several parts. First of all, whether there were 60 people who appeared in a given year or 90 people who appeared in a given year, 60% of those people were known to us before they appeared on dialysis; 40% were not known. So, for each year we have 60% known, 40% unknown.

The reason for that is that the symptoms of kidney failure are very, very subtle. In other words, the symptoms are not related to kidneys. People are a little tired, they're a little anaemic, and the sensitivity to making the diagnosis early is not high among the practising physicians.

Just this morning before I came, a lady with 10% kidney function was referred. I'm seeing her tomorrow and I've never heard of her before. This happens all the time. There's nothing much we can do about it except to better educate the primary care physicians to be sensitive to the symptoms and make the diagnosis earlier, and then we can plan, because it's costly when we have people turn up in our emergency rooms.

As far as the jump from the 60 to 90 is concerned, I really don't know what happened that year. Obviously, the age structure of our population didn't change. Perhaps the physicians became more sensitive and recognized more patients. I don't have an explanation for that step jump at all.

Mr Waters: My concern is that it was a reality. This is my first day on this committee and you're the second person I've heard talk about this. I know that when I sit and talk with my caucus members, and we hear a lot of discussion in the House as well, about planning, how do we plan for this if out of the blue, all of a sudden you jumped to that extent in one year, that number of people?

If we don't know where they came from within the group, how can we plan for the future? Obviously, unless we do something about, I don't know, whether it's diet or something way back down the line -- this is a growth industry that we don't want to see grow.

Dr Churchill: It really is very difficult to answer your question. There are a lot of things I can speculate about. For instance, several years ago we would have turned away or discouraged people referring octogenarians. We see people in their 80s all the time now. The family doctors may very well have allowed people in their 80s to die from kidney failure and now they say, "Oh, the technology's available" -- and quite rightly -- "and this person is bright and alert, and just because they're 80 years old they shouldn't be denied dialysis." That sort of jump may be responsible -- in other words, there may have been a change in the way that we deal with the pre-existing renal failure.

The data that I showed you are based on age-related rates of renal failure and the population structure in our referral area and the predicted change in demographics from the department of geography. If the rate of renal failure changes or if people start referring more people, then these estimates may be an underestimate.


Mr Waters: If I might, just one quick question. I would like you to expand maybe a bit on -- somewhere in the body of this -- the home dialysis. In here there's a comment that they were dealing with the older machines. What do you suggest we do? I'd like you to expand a bit on that. I think it's worthwhile.

Dr Churchill: In our hospital, we tend not to be as tied into life support which is targeted specifically at patients with renal failure or patients with cardiac problems. The life support moneys -- they may be 50 cents on the dollar and they may be late -- are taken into the hospital's global budget and they aren't earmarked for program A or program B.

We have convinced our administration, and it's an administration which understands the problem, that home haemodialysis is a priority. They have allocated additional capital funding from within the hospital budget. We are in the process of converting all of our home haemodialysis patients from old machines to modern technology. We are encouraging new patients to go on home haemodialysis and they will have the modern technology.

Mr Larry O'Connor (Durham-York): Part of I guess why we're dealing with this is because of the changes and trying to be more responsive to the needs of people in the community who would like to have some home care as a preferred option, as opposed to travelling great distances.

Some of what we heard through the presentation, some of the affected families too, is the huge cost. I guess there's a range in how some of that home delivery of service is provided. Some bring in registered nurses to perform the functions that are necessary; it doesn't necessarily need to be a registered nurse, though. How do we try to develop a network out there that can provide the service but maybe not at such a high cost to the family?

I think part of it's going to be an education process so that the family can feel comfortable, that a family member can actually be the one who's doing that portion that they've got a registered nurse doing. Just some of your comments on that.

Dr Churchill: For patients who live somewhat distant from the centre and might require an hour, an hour and a half to drive, we encourage those patients to learn home haemodialysis, with the patients themselves being responsible for the treatment. They have control, as Dr Singer mentioned, and that's very, very important. Home haemodialysis and CAPD are the preferred options.

We have a smaller number of patients who are not capable of performing the home dialysis treatments themselves and we have developed a program known as a home helper program for the peritoneal dialysis program. It consists of using a cycler at home, and the nurses who deal with this are VON nurses. The VON nurse goes into the home late in the evening, attaches the patient to the dialysis machine and another nurse takes him off in the morning. It's a very cost-effective way of doing things. If the machine alarms in the middle of the night, they're instructed: "Simply turn it off. We'll deal with it in the morning." That deals with another group of patients.

Another option is an option which we haven't exercised but is very common in Alberta, and that is to have satellite units which have very minimal health care professional staffing. The patients don't have the dialysis machines in their home, but share several dialysis machines perhaps in the local small hospital. A person, not necessarily a professional, is employed to provide an extra pair of hands to help them get off and on the machine. That, in Alberta, is a very cost-effective way of doing things, but it's not a program that's been exercised very much in Ontario.

The Vice-Chair: Thank you.

Mr O'Connor: What --

The Vice-Chair: I'm sorry. We're extremely short of time. We have another presenter who is an hour late in presenting and there's going to be a vote in the House, I was told.

Mr O'Connor: I appreciate that.

The Vice-Chair: Ms Sullivan, a short question.

Mrs Sullivan: The family physician has been raised on several occasions through the hearings with respect to a number of areas, one of which is possibly a prediction that our rates are lower than American rates because there is a lack of referral. Another area was with respect to educating the family practitioner so that the doctor can come forward with an earlier diagnosis. We've heard a bit, but frankly not an awful lot, about the family physician's role in longer-term care and involvement with the patient after the dialysis has begun.

It seems to me that one of the things that people who have mentioned the family physician have pointed out is a shortcoming in physician education. I guess the other area too was the family physician dealing with the donor request. I'm wondering what recommendations you would make with respect to increasing the knowledge of the family physician; what perhaps relationship, say, the specialty groups have with the family physician research unit in London that's doing a fair amount of work. What happens? How does this whole gang of people get together?

Dr Churchill: As far as the patients who are already on dialysis are concerned, the family doctors who have patients on dialysis learn very quickly about end-stage renal failure and dialysis and they become sensitized and are good practitioners. They actually take care of the patients between dialysis visits. We encourage that. Those physicians do a very good job. They recognize the next patient who comes in with kidney failure.

But despite the fact that kidney failure has a tremendous impact on individuals and on the health care system, many physicians just don't have patients with kidney failure in their practice. They're just not accustomed to it. And the things that you don't see very often you don't think about very much.

I'd like to have some magic solution for improving the education so that nobody would ever miss a patient with chronic renal failure. I think we're going to have to live with doing our best with including this on refresher days for family doctors, but it's, quite frankly, quite low on people's priority list. If they haven't seen a patient with kidney failure in five years of practice, they don't think it's important.

The Vice-Chair: Thank you for your presentation. It would be nice to spend more time, I know. We need to.


The Vice-Chair: The next presenter is Nancy Abbey. Welcome. Sorry that we're an hour late hearing you.

Ms Nancy Abbey: What time does everybody have to leave by?

The Vice-Chair: I understand there's a vote in the House. I was told. But welcome.

Ms Abbey: Let's hope they've saved the best for last.

Good afternoon. I also want to thank the chairman and the committee for having the chance to come and talk to you today. Some of you may not know, but Baxter Corp is the largest dialysis supplier in Canada. We supply dialysis products to over 2,700 home clients. We are a peritoneal as well as a haemodialysis supplier. Our head office is in Mississauga. We're about 1,500 employees and we manufacture our peritoneal dialysis supplies in Alliston.

My primary responsibilities at Baxter as business development manager include strategic planning for the renal division as well as developing new services for our dialysis customers. We consider our customers both our home clients as well as customers in the hospital.

After sitting through the hearings the past couple of days, there seemed to be a need to understand how dialysis is funded in Ontario, as well as understanding some of the initiatives that are taking place in other provinces. My role in strategic planning has caused me to travel across this country and understand on a provincial basis what has happened in health care reform and also to understand how some of those changes have impacted dialysis services.

There are two parts to my talk. The first part is to discuss with you how dialysis is funded in Ontario and the second part is to briefly mention a pilot project that Baxter is willing to fund which will enhance the care of home PD patients.


As Dr Clark pointed out this afternoon, dialysis is considered a life support program. It's recognized as a high-growth area and is funded on a per-patient basis, ranging from about $27,000 for a PD patient to about $40,000 for a total care haemodialysis patient. Dr Clark went through with you the programs that are funded under life support, and this includes dialysis.

To give you a perspective on how this all began, the life support program for dialysis was established by the Ministry of Health in 1986. You'll find this in your handout.

In 1986, standard costs for renal services were developed by three hospitals: Kingston General, London University and Ottawa General. They looked at direct cost categories: nursing, medical and surgical supplies, some drugs, lab supplies, X-ray and there were some other costs and other items included. A variable overhead rate of 17% was added in, but costs for capital equipment were not included.

There are two components to this funding method, component one and component two. Component one really looks at what your projected forecast will be in growth of patients, and again, it is on a per patient basis. Component two then matches what your projected growth is to what you actually had happen, so you have a readjusted base. Component one really is reflective -- and Dr Clark went through this -- it's an after-the-fact. You have the growth and then you get the dollars afterwards.

To make this concept a little easier to understand, I've listed here three life support funding treatments for dialysis. There's a more complete listing in your handout, but I think it's important to understand the concept.

Every type of dialysis treatment has a weighted unit to it. This is reflected by the actual intensity of the direct cost categories. There's also the unit value. This is the component of life support that changes every year. What I've done so we can compare apples to apples is, haemodialysis is typically 156 treatments a year per patient, so we're looking at it on an annualized basis here.

Haemodialysis is funded per treatment, whereas home therapies are funded on an annual basis. So you'll see that there's quite a bit of difference here between what is given for each new total care haemodialysis patient who is projected to come into a program versus what's given for a home PD maintenance.

You'll note that the numbers I show were for 1992-93. The reason for this is that I didn't have an update for 1993-94, but I do understand through the comments that have been made throughout these hearings that funding has now been given for 1993-94 patient growth and that the ministry is committed to funding dialysis on a volume basis for 1994-95, with the actual dollar amount still to be determined.

In theory, this funding of dialysis should work relatively well, but I think we've heard what some of the downfalls are. The major problem is that there aren't measurement tools in place to make sure that what the hospital receives actually to fund its dialysis growth is then allocated to the dialysis budget. This obviously puts strains on it because the programs have accepted those patients into their program, but it's difficult to get the dollars to reflect that growth.

I just want to go into some examples. I'm now going into some of the other initiatives that have occurred across the country and how dialysis is funded a little differently. On the overhead here, I'm not very familiar with the Yukon and the Northwest Territories, unfortunately, but the green areas, the midwest as well as the Atlantic provinces, primarily are funded on a global basis. The hospital receives money in its operating budget and the dialysis budgets compete with all the other budgets in the hospital.

The areas in red, primarily BC, Ontario and Nova Scotia, have all different types of funding mechanisms. British Columbia has a program where they've looked at their home dialysis program and it's managed through a government agency called Kidney Dialysis Service. They've taken all the dollars that would be allocated to home patients and centralized the budget. The hospitals receive money for in-centre care, including home patient training. It's a very cost-effective way to do it, and I'll talk about that a little bit in a minute.

Ontario is red because of our life support program.

Nova Scotia has also developed a different funding program. I've included a handout, and in the interest of time I'm obviously not going to have a chance to go into any great detail, but it's a handout from the Royal College meeting in September. Dr Jindal is the director of the nephrology program at Victoria General Hospital and was very much involved in Nova Scotia in developing a provincial dialysis program.

The key elements of the handout: Basically there was a multidisciplinary government committee established to review the dialysis program for both Nova Scotia and Prince Edward Island. PEI does not offer haemodialysis on the island. Patients receive that care in Nova Scotia.

The funding here is that, if you look at the second column, the top, under "Funding":

"The review revealed that a failure to increase funding and staffing of the program would result in overt rationing of dialysis beyond our current conservative approach to patients with major co-morbidity."

What they've done now is taken the dollars out of the hospital budgets, developed a provincial dialysis budget, and they have different budget envelopes. They have an administrative budget. They have a unified budget for provincial home dialysis, similar to what British Columbia has done. They have a province-wide capital equipment budget for haemo machines as well as cyclers. The in-centre haemo unit is funded in their hospital budgets on a real-cost-per-procedure basis.

Basically, the review process has confirmed that the government is committed to funding dialysis. They recommend the dollars that are allocated to dialysis. That there's no new money in the system means some other service has to suffer because of it.

I think it's an interesting approach, and it was very much built around the success that the Kidney Dialysis Service had in British Columbia.

The other point is around new initiatives to deal with the dialysis crisis. Since 1991, British Columbia has had a BC Renal Disease Council. This is something that Mr Gardner made reference to earlier. I've included for you the terms of reference of what this BC renal council was established for.

Its purpose was to act as an advisory body, and it facilitated the provision of high-quality accessible care to renal patients throughout the province through the coordination of a network of health care services. It was a multidisciplinary committee and it reported to the Deputy Minister of Health, although it's just changed. There's a new leader for this renal council, and it's now the executive director of community health.

Their functions included developing a long-term strategic plan. They established task forces to do this. They're developing guidelines, they're providing recommendations, and I think it's been a success story. It took a while to get this committee going. I think there were lots of different people involved and the results weren't coming. Their initial project, being a costing project, has been a big success and it's going to allow them to plan in the future with some of the issues we've talked about here. Specifically, one of the ideas they have is having a registry of all patients who would potentially need dialysis care and developing that, having their postal codes and being able to map it and understanding where these patients are coming from.

You'll recall that I mentioned my presentation was in two parts. Mindful of the role we play within the dialysis community and supporting our customers, I'd like to advise this committee that in the next couple of weeks we'll be bringing to the Minister of Health a proposal for a possible pilot project. This project is a not-for-profit, Baxter-funded initiative which will offer support services for home dialysis patients. I'm happy to note that Dr Clark mentioned in his talk that a preventive-type clinic was a good idea and I believe this centre will fit in nicely with that idea.

Overall, I commend the government, and specifically Jim Wilson, for encouraging these hearings. It's been an excellent opportunity for the issues to be brought forward in a thorough and thoughtful manner.

With the financial constraints being faced by the ministry, we sincerely hope that we will have the chance to review this proposal with the minister. I think it's time for some creative initiatives to be tried. Our intention is to have an outline of this proposal to all the committee members within the next couple of days, with the formal proposal being completed in a couple of weeks and presented to the minister.

The other point that I'll touch on real briefly is this talk about, how do you educate GPs? One of the initiatives we're doing some research on is the idea of doing video teleconferencing education. There are a multitude of satellite hookups that are actually quite rural-community-based that we might be able to leverage. It's certainly a Baxter initiative and we'll be looking at it for our 1995 budget. The chances here are great to be able to have a speaker perhaps located in Toronto but the ability to do a general education on what renal failure is and when you refer patients, and I think the result of that could be very interesting and very productive.


The Vice-Chair: Thank you. Questions?

Mrs Sullivan: I'm interested that just towards the end you spoke about I guess a pre-dialysis patient database, which clearly is missing. I'm just wondering if you would just note in the notes that we may want to discuss that, as well as a network approach between centres. Dr Churchill, I think, spoke not of an agency but of a regional approach to planning. My sense from presenters when they've discussed an organizational approach is that an independent agency is not appropriate in kidney disease but perhaps a BC model would be, which is a network of networks. Is that your sense?

Ms Abbey: I think it's important, when you've got a chronic care program in an acute care facility and the growth -- you know, the 10% statistic is quoted over and over again. The trouble is, that acute care budget is being driven down at the same time as your chronic care is growing. The volume-funded bit of the budget works. The problem is, it's lumped in with these other programs, and so the net effect is that dialysis suffers.

I think the other comment about the ongoing regional planning is so critical to this. We reach these crises and then we get into planning, rather than just continuing the planning so that we don't get into these crises.

Perhaps, as Dr Churchill alluded to, maybe rather than -- in BC most of the care is delivered at the urban area. In Nova Scotia it's one hospital. So it's a little easier to have one dialysis budget. The notion of maybe having regional dialysis budgets to cater to the services being provided in the dialysis units per region would be an interesting concept to see how it would work.

Mr O'Connor: As we've gone through this set of committee hearings, we've had the opportunity to talk to a number of people involved in future planning, and the concerns. I think one thing I might have asked the good doctor who was before you would have been a question on planning. There's the education part that's got to take place for the doctors, the physicians, earlier on. There's also then the planning that needs to take place, for example, the planning that's taking place right now that's just being set up that we heard from the committee chair who came before us.

How do we make sure that all of those parts get tied into it? As we look towards planning, and the educating that's necessary too to be part of that planning, do you have any suggestions how we can tie that together a little bit and direct it? I'm sure that all the comments made in these committee hearings will be looked at by that committee.

Ms Abbey: Right. I think we've got a great opportunity with so many planning groups and committees established. We've heard from the Central East Regional Dialysis Committee, which has a six-month mandate to develop a report. We're looking at sort of the end of 1994 to have a look at that. The Kidney Foundation: I work with them on their PD working group, and I think it's been an excellent example of different people, a multidisciplinary approach to looking at developing some standards around care, and I also think the report coming from this committee.

I guess what I would be encouraged to see is that that planning then turns into implementation. The challenge is going to be, from those plans, you're going to see that more dollars are needed, and that's going to be a real ministry concern. Where are those dollars going to come from?

Mr O'Connor: I think part of the hearing process will also point out, and we've heard ourselves, that what has been based as only the high-tech end of things isn't the only choice that is there, and I guess there's some education for the consumers too that needs to take place, which is part of an overall picture as well. I think these committee hearings do help in that a wee bit as well.

Ms Abbey: I think everyone has quoted that home dialysis is the least expensive, and I think it's important not to get caught up on what you hear is the total cost for an in-centre haemo patient. You're going to always see different numbers depending on the model that someone used, what they included, what they didn't include.

I think it's important that whoever has looked at those costs maintain a consistent model on how they looked at all their therapies, and then the relative difference between the therapies is consistent. You'll have CAPD as a cost-effective alternative to both total care and self-care haemodialysis. That's consistent regardless of who's looked at the costs.

Mrs Sullivan: I have a supplementary on this. We did indeed have a presentation last Tuesday, I believe, from an independent health facility with respect to cost comparisons: hospital-based, home-based and IHF-based. I was, I think you recall, a little suspicious of the numbers that were put forward, because I was concerned that in fact they reflect the same reality and that the independent health facility may well be dealing with a more stable patient than certainly the hospital-based haemo or the assisted self-care.

I understand that Baxter has done some documentation that provides an equivalency in the cost comparisons. Could you make that available to the committee, or is that protected information?

Ms Abbey: No, it's not. In fact, you've seen it quoted, and I know you've seen a number of presentations.

Mrs Sullivan: I know.

Ms Abbey: Dr Mendelssohn alluded to it, because his article in the CMA Journal references that cost analysis, and Dr deVeber showed it yesterday.

The key point there is the number of patients.

I think around the self-care the unfortunate thing is, there are so many different versions of self-care, and it's really, what is the nurse doing for the patient? If you have a self-care unit in a hospital where you have access to more nursing, then you may have called a patient self-care, but in fact they aren't really doing self-care.

When it's an alternate-site facility and you don't have the resources there, that referral for which patients are actually capable of doing self-care at an alternate site -- those patients do have to be stable, and they are going to be less expensive because of the labour component. You can treat more patients with the same number of nurses.

Mr O'Connor: One thing that was pointed out to us as well was that there are parts of the process right now that -- we're not reusing some of the canisters, I think it was, that we could be. I just wondered, as somebody representing the manufacturers, what your view is on that. Is it a possibility? It seemed to point to some possible savings there. It was pointed out to us as a potential.

Ms Abbey: Our position on that: Our dialysers are manufactured and labelled as single-use products. The FDA in the US would like us to go through extensive testing to show that our dialysers could be reused. We do not have any control over the quality that's done in the reuse process, so we can only guarantee our dialysers from a quality standpoint for the first time they're used.

I think there are cost savings associated with it, but I think you have to look at what those cost savings are relative to other things you can do in your program to try and save the same amount of dollars.

In the US, if we were to change the labelling on the dialysers, any manufacturer would suffer in terms of the cost to get that multi-use label. That's a very difficult thing and it's extremely expensive.

The Vice-Chair: Thank you for your presentation. I'm pleased to note that you've had the full complement of time even though we were an hour late getting to you. The committee stands adjourned, to meet again, I believe, on Tuesday at 3:30. Thank you for your attendance.

The committee adjourned at 1759.