CENTRAL EAST REGIONAL DIALYSIS COMMITTEE
NORTHERN DIABETES HEALTH NETWORK CORP
CONTENTS
Monday 18 April 1994
Dialysis treatment services
Central East Regional Dialysis Committee
Lyn Linton, chair
Graham Constantine, executive director, York Region District Health Council
George deVeber
Northern Diabetes Health Network
Mae Katt, vice-president
Peter Blake
Eli Rabin
MORE Program of Ontario
Cheryl Rosell, executive director
Arthur Shimizu
STANDING COMMITTEE ON SOCIAL DEVELOPMENT
*Chair / Président: Beer, Charles (York-Mackenzie L)
*Vice-Chair / Vice-Président: Eddy, Ron (Brant-Haldimand L)
*Carter, Jenny (Peterborough ND)
Cunningham, Dianne (London North/-Nord PC)
Hope, Randy R. (Chatham-Kent ND)
*Martin, Tony (Sault Ste Marie ND)
McGuinty, Dalton (Ottawa South/-Sud L)
*O'Connor, Larry (Durham-York ND)
*O'Neill, Yvonne (Ottawa-Rideau L)
Owens, Stephen (Scarborough Centre ND)
*Rizzo, Tony (Oakwood ND)
*Wilson, Jim (Simcoe West/-Ouest PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Johnson, Paul R. (Prince Edward-Lennox-South Hastings/ Prince Edward-Lennox-Hastings-Sud ND)
for Mr Hope
Murdoch, Bill (Grey-Owen Sound PC) for Mrs Cunningham
Sullivan, Barbara (Halton Centre L) for Mr McGuinty
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 1531 in committee room 1.
DIALYSIS TREATMENT SERVICES
Consideration of a matter designated pursuant to standing order 125 relating to dialysis treatment services.
The Chair (Mr Charles Beer): Good afternoon, ladies and gentlemen. We are continuing our review of dialysis treatment services in the province. We have a full agenda today. Bob Gardner will draw attention to two documents which are in front of committee members.
Dr Bob Gardner: One is a summary of the first two days of hearings from last week. Members will note that summary is in a slightly different style than the summaries we do for bills. There are some prose-linking passages and summary passages that pull together the various bullet points, specific points from the various witnesses.
The reason for that is both analytical, in the sense that it makes more sense of a complex issue, but also that we do that with the anticipation that members may want to put that summary in their actual report, in terms of what the committee heard. As you look at it, you may give some thought to that in terms of how you would see adapting it for the report.
You may also want to look at the sections and the issues that were brought up in the summary in terms of thinking on instructions for us for the report, those instructions which you can give tomorrow.
Finally, there is a draft report, anticipating your instructions, and this is technical material from the ministry, a summary of the minister's statement and the various definitions and descriptions that I put together some time ago for you. Likely that would go in the front of the report, then the summary and then your conclusions and recommendations and so on at the end.
The Chair: Fine. If there are any questions on that, speak to Bob later this afternoon or tomorrow. We will move to our first presenters.
CENTRAL EAST REGIONAL DIALYSIS COMMITTEE
The Chair: Welcome, Lyn Linton, chair of the steering committee, central east region review on dialysis services, and Graham Constantine, executive director, I hasten to add, not of the York region health unit but of the York Region District Health Council. I knew if I didn't say that, Mr O'Connor was going to say it.
Mr Larry O'Connor (Durham-York): That's right.
The Chair: I thought I should jump in. Please go ahead with your presentation.
Ms Lyn Linton: Thank you for having me here today. I am going to have Graham read my speech.
The Chair: Is there a doctor in the house?
Ms Linton: I feel very fine; it's just my voice. I sound like a cellular telephone -- in and out. I'll save my voice for the questions, which I'll answer at the end of it.
Mr Graham Constantine: I think the committee did receive copies of the notes.
"Good afternoon. I'm Lyn Linton, a volunteer with the district health council and chair of the Central East Regional Dialysis Committee. I am pleased to participate in these hearing sessions and I'm happy to have the opportunity to speak on behalf of the Central East Regional Dialysis Committee. My report to the committee focuses on the role of the district health councils, the impact of regional planning and, within this context, the goals of the dialysis committee. Before I begin, I would like to address one of the motivational factors which draws me here today.
"A few weeks ago, on a Sunday, I was watching on television the parliamentary proceedings for that week. With interest, I was listening to a member of Parliament speak to the House on his concern for dialysis services in the province. As part of his speech, the member stated his `lack of confidence' in the dialysis committee.
"Thousands of volunteers on behalf of the district health councils across this province are committing their personal time and collective experiences by willingly taking up the challenge to improve upon the delivery of health services. We have been doing so for some 20 years, since the inception of the district health councils. During this time we have developed skills which successfully allow us to manage the change process.
"We are individuals who are not only prepared to give of our time but of ourselves, setting aside our partisan politics and our personal feelings in order to listen, and then to listen again. We facilitate, mediate and move communities from current realities to preferred futures. In return, we ask for trust in our abilities and the confidence that, if given the opportunity, district health councils and their volunteers can and will make a difference.
"In order to meet expectations of our communities, it is important that our role be understood. Originally district health councils were given four main tasks: to identify health care needs in communities and recommend ways of meeting them; to establish short-term and long-term health care priorities; to coordinate health planning activities within their communities into an effective and efficient system; to work towards cooperation in the social development activities of their communities.
"In 1989, the role of the district health councils was strengthened and enhanced to include providing advice to the Minister of Health on changes in health spending; requirements for human resources in health care; strengthening area-wide planning, which is regional planning with other district health councils; and integrating health and social services planning.
"To achieve this mandate we must put into proper context that district health councils do not govern, manage, operate or fund any health services. Rather our role focuses on providing a process which enables local communities to recommend local solutions to issues impacting on health services and delivery. Decentralization of the planning process promotes a broader understanding of factors affecting health services and allows for accountability and ownership in developing resolutions. To accomplish these outcomes, DHCs work hard at maintaining the integrity of the process and its added value to participants.
"Building on that strength, district health councils and the Ministry of Health are now focusing on a regional approach to planning for those services which identifies an arbitrary pattern of health service utilization, that is, individuals or communities which cross borders for services; requires access to tertiary services; promotes a critical mass approach for better outcomes; seeks economies of scale which could be achieved through shared planning.
"A regional planning approach also promotes and facilitates an improved communications network and ultimately a stronger political voice. For regional planning to be successful, basic principles which guide the process are crucial, not only for DHCs within a region but for local communities participating.
"Such principles would include merging of partnerships between stakeholders, which is built on trust and equity; ensuring that local citizens are involved in the decision-making and planning processes; local issues and concerns being given due consideration and influence in any broader planning initiatives, with all of their stakeholders having a thorough understanding of their involvement; effective and efficient communication linkages, both laterally and vertically, between all stakeholders; undertaking issue- or program-specific services which would transcend existing district boundaries, involving all DHCs within that region; ensuring that the process was enabling and not encumbering; finding a process which would build on the collaborative and collegial attributes at the district level; and where due consideration must be given to planning, implementation, monitoring and evaluation phases during the process of planning.
"This leads me to speak specifically about dialysis and why a regional planning approach is being taken. Not only does dialysis fit the criteria, that is, it transcends cross-borders, requires access to tertiary services, and possible economies of scale could be achieved through shared planning -- but it also has identified itself as an issue within the six DHCs' regions.
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"Central East is comprised of six district health councils: Durham, Haliburton Kawartha and Pine Ridge, Metropolitan Toronto, Peel, Simcoe and York. Its population represents 44.4% of the provincial total and contains some of Canada's fastest-growing areas. In 1990-91, 44.7% of the total provincial expenditures were allocated to this region. Additionally, it has the largest multicultural population and is challenged by meeting the needs of a large urban population as well as sparsely populated rural areas within our region.
"The planning design for the central east regional study on dialysis provides for a balance between the needs-based planning approach and a consultative methodology involving significant dialogue with the community of consumers and their care givers. Included in the design is the need for a communications strategy which will both elicit ideas and opinions about system change and inform stakeholders of current economic and fiscal realities of health care.
"Composition of the steering committee consists of consumers of dialysis services and care givers, DHC representatives as well as institutional and community-based providers. A technical advisory subcommittee has been instituted to provide the steering committee with expert opinions and is made up of providers of dialysis services. The composition of the steering committee is designed expressly to maximize the community-based character of the planning process.
"The steering committee will be the structure through which the study will be conducted and the regional plan developed. The function of the steering committee is to lend a strategic focus to the development of the regional plan. Consultants will be retained to work directly with the steering committee in the development of the strategic directions, alternative strategies for the alignment of services based on the identified needs of the population, the availability of human resources and the development of an implementation plan.
"We view the critical elements of the study to be inclusive of extensive consultation with stakeholders, including hospital boards and management, health care professionals, hospital staff, community health and social service agencies, existing health care-related committees, physicians and consumers. The support and `buy in' of the stakeholders is critical to the success of this project. The expected outcomes for the final report will include the following:
" -- An analysis of the population requiring dialysis services in central east.
" -- A determination of the resources required to meet the needs of the population now and in the future.
" -- An analysis of services in place, their location, capacity, utilization, relationship to the sources of need and their current success in meeting the needs.
" -- Development of alternative courses of action to better meet the needs, within available resources.
" -- Recommendation of a preferred option for the immediate and long-term needs.
" -- Recommendations for service linkages, integration, rationalization and the reallocation of resources between organizations and between the institutional and non-institutional sector in order to ensure that the service system is responsive to identified needs.
" -- Recommendations as to how the preferred option should be implemented and who has the responsibility and authority to monitor its progress.
" -- Recommendations as to how the population's need for the dialysis services is to be updated and monitored.
"The final report will be submitted to the central east district health councils for approval.
"Taking on a project of this magnitude is no small feat, and in order to maximize the chances of success, the `planning to plan' or preparation cycle has required a great deal of time for various reasons:
" -- We are creating a new model for regional planning. There have been no previous studies of this scale using the new DHC approach.
" -- Mobilization of communities and organizations to appoint members to the committee" -- and we note that all the appointments are incomplete at this time.
" -- Consideration of the number and mix of stakeholders in a population of 4.4 million.
" -- Until funding was received, the project was entirely supported by the CEOs of the Peel and York DHCs.
"We believe that every effort has been made to ensure that the final outcome of this study will be of value not only to the funders and providers but, more importantly, to those who require the services.
"Thank you."
Mrs Barbara Sullivan (Halton Centre): I'm interested in the way you have approached your presentation to the committee, first of all, with a discussion of the role of the district health council and then moving into the specific work of the steering committee.
The first question I have is with respect to the role of the district health council. We have seen over a period of time increasing responsibilities being asked of district health councils and some deep and abiding concerns that the resources, both human and financial, are not available to the DHCs so that they can carry out their mandates.
Furthermore, there is concern that frequently there's an overlap with a role, by example, of the academic science centres in terms of strategic analysis. I just wondered if you would comment on that and if you have recommendations with respect, by example, to a district health council act or other mechanisms.
I know, Mr Chair, that this question could in fact create a three-hour response --
The Chair: No, it won't.
Mrs Sullivan: It won't. The Chair is very good.
Then if I could just tell you that my concerns with respect to the steering committee on dialysis are that we have had discussion through Dr Janet Roscoe that indicates direct correspondence of the Toronto Dialysis Committee -- and David Mendelssohn, who is vice-chairperson of the Toronto Dialysis Committee -- with respect to recommendations from that committee, which certainly has credibility with respect to the professional judgements that are being put forward; with respect to very specific initiatives that should be put into place to ensure that there is an adequate level of dialysis services available in the area served by the Toronto committee.
There is also a second letter from Dr Roscoe which indicates that the committee, which presumably is the DHC steering committee, as of March 29 had met on only one occasion. We understand the subsequent meeting was cancelled and there was no nephrology representation on the committee. Could you respond to that?
Mr Constantine: We actually met twice. The technical advisory committee and the steering committee met on April 15. On March 24 there was a meeting of just the DHC members on the committee and the ex officio members. There were no other representatives. We were trying to do some orientation for the DHC members, both in the process of regional dialysis and the process of regional planning.
I'm just going back to the second-last question, the comments made with regard to the immediate problems in accessing dialysis. I understand, and it has been recorded here in the standing committee, that the ministry has taken some initiative to resolve some problems on a one-time basis for this fiscal year. I'm not sure whether you've had that brought to you or not yet.
Mrs Sullivan: We have had information with respect to action that was taken by the ministry in November. However, that action was really to move funding that should have been spent on the Sussex Centre, because the Sussex Centre hadn't opened. That funding has not continued and in fact may not have been spent.
Mr Constantine: But there is another initiative and there were two meetings called of the CEOs and the chiefs of nephrology, of the providers of dialysis, on March 18 and on April 7, where they were advised that we were one-time funding for this next fiscal year to solve some of the immediate problems.
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Going back to your first group of questions, in my opinion the funding for the dialysis study is adequate. I think there are some ongoing funding problems with the district health councils, which I think the ministry is trying to resolve at this time. As new initiatives are coming out -- long-term care, mental health reform, and possibly cancer -- they are attempting to augment the existing resources of DHCs.
Mr Jim Wilson (Simcoe West): I want to make clear that really the frustration that's experienced by patients essentially has been directed at us as politicians, and I guess from time to time we've directed it elsewhere. I certainly make any apology if it offended the DHCs, but the frustration really is directed at the Ministry of Health.
This is not a new issue. I've only been Health critic for three years and dealing with it for three years. We've had attempts at these studies before. They've not been, for many, many reasons -- and we've had witnesses appear before the committee explaining why these studies haven't seemed to have gotten off the ground. I guess there is frustration and a real impatience out there and I'm sure you sense it too, particularly as volunteers.
Given that, I'll just ask you a very direct question: Given all of the concerns and problems you've outlined for us in your presentation today, when can you can get the final study done? As you know, the ministry will not move to even short-term solutions without that study.
Ms Linton: Our first meeting of the technical advisory committee was April 15, on Friday, and then we had the chair and the vice-chair of that committee come on to the steering committee on Friday afternoon. The next meeting will be on April 20, this week. The clock started ticking, in our books, on April 15 for a six-month study.
As you know, now there is still some process that has to be followed. One is the selection and agreement to the consultants who will do the study, and that will happen over the next three to four weeks, at the maximum, hopefully, five. Once the consultants come on board, my experience in other studies is that it starts to move very quickly.
Once again, our focus is trying to do a very good study, one which is of value. I recognize the frustration on the part of many people, but if you rush this and it's not a study that can be implementable, then I don't think we've done our job and I think then we may have wasted the money that could have been spent.
I want to proceed. I think the foundation is there, I think we've selected excellent members. Janet Roscoe, by the way, is on the steering committee. We could not make that selection on behalf of this technical advisory committee. They were asked to vote their own chair and vice-chair, and Janet Roscoe is on the steering committee.
Mr Jim Wilson: I appreciate that response. Can we help you in the appointment of members to the committee? There are still some vacancies, I understand. One of the reasons we're having these hearings is to try to speed up this whole process, really, from the government's side of things. Are you missing key people that we could probably find in our communities for you?
Ms Linton: It is frustrating on our part as well, because we have sent letters out and we have waited, and sometimes we've had to send second letters out to get membership on to the committee. That delays the process.
We can't move forward until all of the members are there, although we have held the first meetings on April 15. We are missing, I believe -- the College of Family Physicians has not forwarded a name to us, and that's the one that will sit on the steering committee. We have the two technical members on the committee now.
We were pleased with the representation on the committee from consumers that were present. We have a member from the kidney foundation, a volunteer on their board. So it's a well-rounded committee and will represent very nicely the views of all of the citizens.
The other thing we have to remember is that we have geographical territories that need to be represented. Jenny Carter is here today. She knows that there are many needs of members for dialysis in our region. Their needs need to be heard, and we need to put a balance in our region of the urban needs versus the rural needs, and we have representation from across the counties as well.
Mr O'Connor: Thank you for making your presentation today. I hope we don't strain your voice too much.
The planning process I think is important, because as we move forward in taking a look at exactly what services are needed, we need to take a look at exactly what's available.
I noticed with some interest an article in a newspaper down in eastern Ontario about, "Legion Branch Donates $150,000 for a Dialysis Unit." The Legions throughout Ontario, and a number of service clubs, are always terrific at coming through in a pinch and helping out in that way.
My concern is, is there a way that those people could be pulled into the process so that they can be talked to in part of this planning, because they may represent part of a community as well. They don't mind donating the money, because they do have some fund-raising elements that they do, but it's got to be targeted. The planning has got to take place, and they may want to be involved in some of that process as well.
Ms Linton: As I stated in my speech, we're looking for a very extensive consultation throughout the entire region, so that includes the east part of the Haliburton-Kawartha area up to Metro Toronto around. And you're right: I think service clubs have a lot they may be able to contribute and have been contributing over the years, and they too will have a say.
The Chair: Thank you both very much for your written submission and also for answering our questions. Good luck with the committee, and we hope, Ms Linton, that you're feeling much better soon.
Ms Linton: Yes. I hope so too.
The Chair: If I could then call on our next presenter, Dr George deVeber, consultant on medical affairs with the Baxter Corp.
Mrs Sullivan: One point, Mr Chairman, while Dr deVeber is coming forward: I wonder if we could have clarification from the Ministry of Health as to whether there in fact has been new one-time funding on an interim basis with respect to dialysis in the central east region. When the minister was here on April 11, she made no reference to any new funding other than the $100,000 for the study itself, and I really would appreciate some clarification.
The Chair: We'll get the answer to that. Thank you.
GEORGE DEVEBER
The Chair: Dr deVeber, welcome to the committee. Please go ahead with your presentation.
Dr George deVeber: Thank you. I have a bit of laryngitis, but I don't think I caught it from Ms Linton.
The Chair: It's important that you don't sit in the same chair.
Dr deVeber: It must be a bad room for that.
I'd like to thank the committee for inviting me to appear. As I understand it, I was invited by the ministry to give you some information about a newer form of dialysis using cyclers for peritoneal dialysis, which we believe will certainly fill a niche and help some patients and maybe help take some of the pressure off.
But before that, I should mention I'm really here wearing three hats. I'm one of the more elderly nephrologists in Ontario. I see a couple of older ones, like Dr Rabin over there. But I had the privilege of --
Interjection.
Mr O'Connor: He's saying, who's older than who?
Dr deVeber: Well, we'll see if we'll get into that eventually.
The Chair: I should note that the committee is very respectful of age.
Dr deVeber: I wouldn't want to comment on that. But I had the privilege, I guess, of being around in the mid-1960s and was involved in starting up one of the first dialysis and transplantation programs, at the Toronto Western Hospital. Of course, prior to that no therapy was available at all.
When we started up, of course, access was restricted and we had very severe rationing, because we could only take one or two people at a time, and we indeed had a selection committee, where we sat around and decided if somebody had a PhD and two children and was married, they would be more superior than some poor other person. It wasn't very pleasant, and I'll get back to that in a minute.
Dialysis then developed, and in the 1960s the only chronic form available was haemodialysis. There was sufficient funding, because the health care program and the provincial plan had come in and there was pretty well unlimited expansion, as most of you know. By the mid-1970s, we were getting full and having some problems with access. Then at that time the technique of CAPD was introduced, actually at the Western Hospital, by Dr Oreopoulos, who was the first one to really utilize it.
That took a while to get going and it wasn't really till the early 1980s that peritoneal dialysis was being accepted as an equal therapy to haemodialysis. A lot of the nephrologists were inherently resistant, as we all are, to change. It took quite a while, but eventually it became evident through several studies that both forms of therapy are completely equivalent in terms of survival and complications and so on. We have a problem with peritoneal dialysis, which I'll talk about later, in that a significant number of patients end up as technique failures and have to go to haemodialysis.
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We solved the funding problem by expanding a modality. Then, in the late 1980s, with transfer payment freezes and so on, it's just been getting worse and worse year by year. I was at the hearings last Tuesday and I've read the other reports. I'd really like to just emphasize what everybody else has said: We're getting into a progressively worse crisis. We have an increase in numbers of patients every year. We have flat funding or virtually very little increase in funding. It really has to be dealt with.
The other hat I wear is that I was involved in the Kidney Foundation of Canada from the very beginning and I'm still involved with its government relations committee, which was responsible for this working group on renal services. I would like to urge this committee and the ministry and the district health council to pay close attention to what their findings are and what their recommendations are, because I don't think we should have duplication. In terms of planning, I wanted to mention that perhaps we should have in Ontario something like they have in BC, where one agency, a government agency, actually runs all of the home dialysis programs, does all the budgeting and funding and so on. In Nova Scotia they have a government agency which actually deals with centre and home dialysis. It's almost like having an outside agency which really deals with it all the time.
I'll go on to what I was originally asked to do here and tell you about cycler dialysis, but I just wanted to mention that Baxter Corp was the first company to make a commercially available haemodialysis machine and it was also instrumental in developing the technique of CAPD along with Dr Oreopoulos.
Since that time, we've been very active in education and training and looking at demographics and quality assurance in peritoneal dialysis. We have a program called the BDP, or the best demonstrator practice program, which really looks at all aspects of how to do peritoneal dialysis better and how to keep people on peritoneal dialysis so we can take some of the strain away from haemodialysis and provide adequate care.
I'm just going to start showing some slides here. If you look at the choice that patients have when they come to dialysis, there are a small number who will definitely do better on peritoneal dialysis for medical reasons and a small number who will definitely do better on haemodialysis for medical reasons. It's probably about 15% to 20%. But the vast majority of patients can do equally well on either.
I mentioned before this best demonstrator practice program we have. What this pie chart represents is a look at 2,000 patients who were on peritoneal dialysis for a period of about three years. If you go up at 12 o'clock, in the red, you can see that 40% were still on CAPD --
The Chair: For those of us laypeople, CAPD is?
Dr deVeber: Continuous ambulatory peritoneal dialysis. Sorry. It has been talked about in the committee quite often, so I assumed everybody knew by now.
The Chair: We should, but sometimes we forget.
Dr deVeber: It's the main form of peritoneal dialysis that's done. There are four exchanges a day and it takes about half an hour to do each one.
You can see that a considerable number of patients were lost to death and some were transplanted, coming around the clock counterclockwise. But the most important thing there is that 22% of those patients, or almost a quarter of them, changed the modality for one reason or another. The next pie chart looks at why those 441 patients, taken from the 2,000, actually changed.
If you go back up to 12 o'clock again, there were various medical reasons which we couldn't do much about. You'll see, coming counterclockwise, that 31% were lost to peritonitis. That's 1990 data, and I would say that number would be much less now with new developments in technology, but it's still a problem. The next one is catheter infection or a loss of catheters. Again, another problem which is probably getting better.
But the most important thing is to look on the right side where we see that 33% dropped out and had to go to haemodialysis, which, as you'll see in a minute, is a more expensive therapy, because of psychological or non-compliance reasons or, in the green, because of inadequate dialysis.
Psychological would imply that a person basically didn't like the routine of changing the bag four times a day; they weren't willing to go to that much trouble or they'll do it for a while and then they get tired of it. So they decide they'd rather go and have haemodialysis, where they can go to the hospital three days a week and just get taken care of by somebody else.
Non-compliance would be something similar, in which patients, instead of doing four exchanges a day or the number they're supposed to do, may drop an exchange because they don't want to spend the half-hour it takes to do one and they go eight hours, instead of four and six hours, or 12 hours.
In terms of inadequate dialysis, there are really two reasons for that. Sometimes people are just too big to do peritoneal dialysis. The regular four exchanges just aren't enough and they need more than that.
Other patients have particular kinds of peritoneal membranes or cavities where the transfer of the poisons doesn't quite work well enough and they need more peritoneal dialysis or some other form. As time goes on, often, after two to three or four years, the membrane actually gets thickened and the transfer of poisons doesn't work well, so they again need more dialysis. Also, the native kidney function -- the patients usually have a bit of kidney function when they start out and they lose that as time goes on, and that's a critical factor in how much dialysis they need.
What's been happening to all these people in the past is they've all been going directly to haemodialysis which is more expensive and for which there's no room, as you know.
I'm just going to go through the costs here and I'd like you to look at the bottom line. On the left is haemodialysis and on the right is peritoneal. Going across, you can see that these costs are everything except physicians' fees. It includes all the hospital overhead and costs.
Haemodialysis in the hospital is $42,000 a year; self-care such as in the Sheppard Centre or the Sussex Centre or at the Markham private care centre would be $30,000; regular CAPD, which is four exchanges a day done by the patient at home by hand, is just over $20,000; using the new cycler type of dialysis, which, as we'll see in a minute, is done at night, including the cost of the machine amortized over five years, is about $25,000.
The point is that peritoneal dialysis is a cheaper form of therapy and, if we can find a way to keep more people on it, we can probably get more people dialysed per dollar. If you look at the bottom critical ratio or cost ratio to total care, you can see that it gets better as we go along.
Just to talk a bit about continuous cycler or cycling peritoneal dialysis, it uses a cycling machine and generally the way it's done, instead of being done in the daytime, the patient goes to bed at night and hooks up to this machine and it runs the fluid back and forth at a fairly rapid rate, so that the exchange rate of poisons is fairly fast. If you do that for seven or eight hours a night, six or seven nights a week, you'll get equivalent dialysis or better to the old way of doing CAPD.
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I just want to show you, this is the first cycler that Baxter brought out, or I guess it's the last one before the one we have now. You can see it's rather bulky and would do all the things you would ask it to do, but it weighs 125 pounds and it's not very portable, other than being pushed around a room. It really ties the patient to home.
Here is the latest version, which weighs only 22 pounds and should do all the same things and can be carried around or transported pretty easily. It's a pretty simple machine and can do cycler dialysis at night quite easily and it's very simple to operate.
What cycler dialysis means, if a patient can do that, first of all, there may be patients who, when they come along to start dialysis, might prefer being at home; one would think they would be. If they could do it at night and not have to spend a lot of time in the daytime doing dialysis, they might choose that. Some of the people who choose haemodialysis might choose this type of dialysis. It also would help the patients who are getting inadequate dialysis or, for psychological reasons, don't want to do CAPD. This way you can do more dialysis. You can speed up the cycles and you can tailor the therapy to the patient.
Just to look at the incidence of cycler dialysis, it really started becoming popular about 1990. You can see that it's rising slowly. The main limiting factor at the moment is that the machines cost $8,000, which is a capital equipment cost, and none of the hospital programs is funded for that; they don't have any capital equipment money. So a lot of hospitals probably would like to be doing more of this, but they just don't have the capital funding. They can get operating costs out of their hospital budgets. That's something that should be addressed.
I want to just show you an example of a rather, I think, important example of how well somebody can do on dialysis, period, and, in this particular case, on peritoneal dialysis.
We had a young lady called Suzanne MacLean, who was hoping on May 28 to set out on a journey from Vancouver across the country to St John's, Newfoundland. She's a CAPD patient and she's going to ride across the country and raise awareness for kidney disease and show that kidney patients can do it. I have another photograph of her here high up in the Rocky Mountains, where she's doing one of her baggage changes. She's on regular CAPD at the moment, but she's a very courageous young lady, so we'll look forward to her coming through Toronto.
That's the end of my presentation. We'll be glad to answer your questions.
Mr Jim Wilson: Thank you, Dr deVeber, for your presentation. Just for the record, I want all members to know that Baxter Corp has a very large plant in my riding and we're very grateful for the jobs that it produces and the stability it brings to the local economy. I thank you for coming on behalf of the corporation to share some of your expertise with us.
I think one of the concerns I have, though, is that none of us is a nephrologist around the table here. I guess what politicians tend to look for with some impatience is solutions. I'm learning, through the process of these committee hearings, that solutions aren't as easy as one might have thought from the beginning.
You mentioned one recommendation, that hospitals aren't funded for the capital cost of cyclers. Do you have any other recommendations for us? You've been in the field for a number of years and we would like, at the end of these committee hearings, to come up with some succinct recommendations for the government to take action on.
Dr deVeber: I meant to mention, through all the years I've been doing it and working in dialysis and so on, the planning process around it has been pretty tragic when you think there's been really no proactive planning or long-term planning. I really don't think we have it now. What we really see is a reaction to crises and patchwork. One area starts complaining a lot, then they get so-and-so. I'm not saying the ministry isn't doing its best, but I just think it doesn't have a long-range planning procedure.
I would really recommend strongly that they look at BC and Nova Scotia, that they set up an agency or a group that really are experts and have ongoing expertise and that this involve the nephrologists and the various people, the stakeholders and so on.
That would be my major recommendation, really, at the moment. There isn't enough money to run the health care system, really; that's the problem. If you don't get dialysed, you don't survive. You can't deny dialysis to people. You can deny annual physicals or you can deny more elective forms of health care to people and say, "If you want that, fine, but you have to pay for it."
Mr Jim Wilson: Thank you for the suggestion. Perhaps Mr Gardner in research could undertake to find out -- and perhaps, Doctor, you could be of some help -- what is happening in other provinces, that the agencies are up and running in British Columbia, for example.
Dr deVeber: Absolutely. We'd be glad to provide that.
Mr Jim Wilson: That would be very helpful.
The Chair: I think as well, Mr Wilson, we may be getting information on that tomorrow. One of the presenters is going to be discussing what's going on in other provinces too, which may help.
Mr Jim Wilson: Great. In your chart that dealt with costs, have you looked at the model of the independent health facility? I notice you had self-care on haemodialysis, but it's not really self-care and it's not hospital-based; it's more what we generically term as a "satellite" independent health facility set up in Markham.
Dr deVeber: Private. Mr Holtzer, I believe, is here, over there. I believe it would be similar in the sense that the patient has to be reasonably healthy to be dialysed there; you can't have critically ill patients or really sick patients. So it would be the same environment as, say, the Sheppard Centre.
I personally believe private enterprise can do it more cheaply than hospitals or even perhaps centres run by hospitals. It's just inherent in business that if somebody is in a for-profit institution or situation, they look at every nickel. They look how much the cleaning fluid costs and everything else. That's my own opinion. I've never had any experience running one, so I can't say that for sure.
Mr Paul Wessenger (Simcoe Centre): Thank you for your presentation. With respect to CCPD, I assume you must have some indication from consumers how they feel about it compared to, for instance, CAPD. Is there a clear consumer preference for the cycling process?
Dr deVeber: We're seeing that. I haven't really been out in the field and talking to patients as much. Perhaps Nancy Abbey, who I think is going to be speaking tomorrow, could answer that question. Have we had any preference, done studies on this?
The Chair: I'm sorry. We have to just keep to you today, Doctor. I think your suggestion is a useful one and perhaps, Mr Wessenger, you can follow that up tomorrow when we are going to be getting more information.
Dr deVeber: You can ask Ms Abbey tomorrow.
Mr Wessenger: Yes, I can ask that. With the cycling process, you believe that more patients could remain on that process for a longer period than on the CAPD process. Is that correct?
Dr deVeber: The big problem with CAPD is that a significant number of patients have what's called technique failure. They're doing -- well, they aren't always doing well medically, but they either don't like it or with the technique of CAPD, which limits you to four exchanges a day or four bags a day, they don't get enough dialysis, whereas with cycler dialysis you can tailor, you can give them as many bags as you want. It depends how fast you run the machine. If you use more bags, it costs more money; that's the only thing. But you can take somebody who's not getting enough dialysis on CAPD and put them on cycler dialysis and provide enough. That's the message.
Mr Wessenger: I understand it just needs to be done once a day. Is that correct?
Dr deVeber: Basically, most patients will do it overnight. They just hook themselves up before they go to bed and they turn the machine on. The machine cycles the fluid back and forth all night and the patients don't really feel that. It doesn't keep them awake or anything.
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Mrs Sullivan: I'm interested in the best-demonstrated-practice data that you have here. I wonder if you could tell the committee, first of all, if anyone who would qualify for the CAPD would also receive the same recommendation for treatment by CCPD.
Secondly, I'm looking at the direct cost comparisons between the two modalities. Are there any other costs associated with drug use that might alter those figures, or other responses or complications that may affect the client response?
Thirdly, and I think Mr Wessenger touched on this issue, would there be lifestyle, quality-of-life factors that would mean that if a patient were going to select the appropriate modality, the patient would in fact choose the continuous process rather than what appears to be a more cumbersome process that interferes with their activities of daily life?
Dr deVeber: In answer to the first question, anybody who qualifies for CAPD theoretically should be able to do CCPD. Secondly, there are no additional drug costs that I know of. Thirdly, because somebody coughed, I didn't quite hear the question, but did you ask if people might choose that over haemodialysis?
Mrs Sullivan: No, if they would choose CCPD over the CAPD. From your experience, if it were a question of patient choice, because of, I suppose, the more beneficial routine associated with the dialysis, would the patient select the continuous process?
Dr deVeber: I would think so, and that's a question that was asked, I think, before. I haven't had a lot of field experience, as this is a relatively new type of dialysis, but it seems logical to think so. Most people would rather go to bed and have something done when they're asleep. When you're on CAPD, if you're working, when you're at work you have to go into a special room or a washroom and do your exchange. It takes half an hour four times a day, which is two hours out of your day, basically.
Mrs Sullivan: How broadly based would the CCPD be?
Dr deVeber: I think it's being used across the country. Somebody out there said there's a lot of it being done in Vancouver. There's a big program in Kingston. You heard last week from Dawn Evans from Kitchener on the new cycler program. The Toronto Hospital, as I understand it, is just getting it. They're taking those patients who would have gone on to haemodialysis, where there's no room, and finding a way to deal with them, or many of them.
The Chair: Dr deVeber, thank you again for coming, both for the slide presentation and also for the written document you've left with us.
NORTHERN DIABETES HEALTH NETWORK CORP
The Chair: I call on Mae Katt, the vice-president of the Northern Diabetes Health Network. Ms Katt, welcome to the committee.
Ms Mae Katt: I have prepared a written submission that I believe was circulated to you. I'm also happy to be here this afternoon to share with you what we're doing in northern Ontario.
We certainly have some critical issues related to kidney dialysis, and more specifically related to our role as the Northern Diabetes Health Network Corp, where we have numerous board members spread across northern Ontario from the Quebec border to the Manitoba border, up to Sioux Lookout, Attawapiskat, Moose Factory. I think our north begins at Parry Sound.
I have prepared for you some of the barriers that we are experiencing with the management of clients with diabetes and those receiving kidney dialysis.
The mission of the Northern Diabetes Health Network Corp is to ensure that people with diabetes and their families in northern Ontario have reasonable access to programs and services for the enhancement of their quality of life. We do this through complementing what already exists in hospitals and communities, and we create new programs especially to serve our difficult-to-serve clients due to the rural geography that we have to deal with or our aboriginal and francophone clients.
The development of the Northern Diabetes Health Network is kind of an innovative approach. We were initially supposed to be an advisory committee to the Ministry of Health. Knowing that living in the north sometimes presents an opportunity to be creative, we took that opportunity and incorporated. We do report financially to the Ministry of Health, which provides our funding, but our accountability is also to our members, our projects across the north and the people we serve.
Our objectives are to improve consumer access to comprehensive and coordinated ambulatory diabetes services, to improve the health status of northerners, to achieve health equity, which is often very difficult to define, and to create a sense of community empowerment.
The 22 board members have reviewed proposals over the past year. We have allocated $4.92 million to 35 diabetes programs or projects throughout the north. For the member who's just left, I guess, we have a total of 35 projects; we have 21 projects in the northeast and 14 projects in the northwest. Our northwest-northeast division is around Sault Ste Marie.
What we try to achieve is basically looking at how we do screening, how we do early intervention, early treatment, that our client and family education is appropriate and that we have access to community-based services to prevent end-stage renal disease that brings our clients to having to use kidney dialysis. We've found that 30% to 40% of clients with diabetes will over a period of years with diabetes, usually after 15 years, become candidates for renal dialysis.
With regard to our dialysis services in the northeast, for a breakdown to show you, we are fairly busy in the northeast with 265 clients; 50 of these clients are receiving haemodialysis. We have probably our largest number of satellite centres in northeastern Ontario, the primary site being Sudbury's Laurentian Hospital, which works closely with southern Ontario facilities, especially in the treatment of children.
We have Parry Sound, which has four clients on haemodialysis; Manitoulin and Espanola have 12 clients; Kapuskasing with four; Timmins has 12; New Liskeard, four. We couldn't get the exact numbers from Sault Ste Marie, Kingston and North Bay. Kingston was a little more difficult, because the clients are being referred in from the James Bay Cree communities, and because it's a federal service, we had difficulty getting exact numbers.
When we start dialysis, the clients come to Sudbury for two weeks and then they are followed at the outreach sites. All changes in treatment, any kinds of changes in condition, all those changes are done through the physicians in consultation with specialists at Sudbury.
In the northwest, we have a slightly different picture. In Thunder Bay, we have 41 clients receiving haemodialysis at McKellar General Hospital and 25 to 28 receiving peritoneal dialysis. We have one satellite in northwestern Ontario; that's in Sioux Lookout and it's brand-new. I think the opening is on April 29. You're certainly all invited to attend. Fifteen clients are on haemodialysis there and 10 are receiving peritoneal dialysis.
In Kenora, we have six clients who are on haemodialysis; they only do haemodialysis there. The Kenora situation is quite interesting from the perspective of the board. When we had talked to the Winnipeg Health Sciences Centre last fall, they were a little concerned that we were going to steal their clients from them, because we were setting up projects throughout the north. Now the picture has changed a little bit, where they're starting to say, "No more," to out-of-province clients.
We're a little concerned because at McKellar hospital we have no more space for dialysis; in Kenora we're at full capacity as well as at Sioux Lookout. They want to transfer 10 to 20 clients back to Ontario. The Lake of the Woods District Hospital in Kenora is a satellite centre of Winnipeg. Looking at the history of that, in 1991 -- I don't know what environment politically we were in at the time, but that's where the province of Ontario transferred money to Manitoba to run the program in Kenora.
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In Sioux Lookout we have the satellite centre, with 20 to 25 clients on dialysis. I just want to illustrate some numbers for you in looking at what we're dealing with. In Sioux Lookout we have a registry of 1,000 clients. Most of those are aboriginal clients who are coming in from 28 isolated communities in the north.
When we look at the numbers -- I have provided a table for you to look at the number of years that these 1,000 clients have had diabetes -- in terms of when they've been diagnosed, for zero to five years, we have 550 of them who are almost new diagnoses; none of them is on dialysis at present. For diagnoses in the last five to 10 years, we have 220 clients, and none of those is on dialysis. For those who were diagnosed in the last 10 to 15 years, we have 120 of those, and none of those is on dialysis. Of all our clients, 15 of the 110 who have had diabetes for over the period of 15 years are the ones we now have on dialysis.
Based on this population sample, we can almost make a prediction that in the next 10 to 15 years we're going to have 115 additional clients requiring dialysis just from the aboriginal population.
From the standpoint of board members and those who've done a lot of community work, knowing that we would rather stay home than come to cities -- some of you don't understand that, but that's the way --
Interjection.
Ms Katt: I think when you look at children who have to go to Ottawa, who have to come down to Sick Kids, there's certainly a real disruption in family life, in the kind of additional stressors, economic stressors, that are put on the family. We think we can improve services through the Northern Diabetes Health Network.
Our mandate for funding is ending at the end of March 1995. We've received $5 million. We developed for the first two years. This is the first year that we've allocated the $4.92 million to programs. We hope our mandate would be renewed. We think we're doing some good work. We're certainly doing some early screening and some early education. We're seeing some very good outcomes from patient compliance. We're seeing some very good outcomes from a psychosocial standpoint, in terms of how our clients cope and deal with something like a new diagnosis such as diabetes or a progressive disease like kidney and renal failure.
In terms of recommendations, we'd recommend:
(1) That we look at improving our screening and our early treatment. We can do that in cooperation with the existing health system.
(2) That we look at services that are locally provided through such a system as the diabetes health network.
(3) That one of the strong points of our delivery is that we are culturally and language-appropriate for aboriginals and francophones. We have three or four native dialects that we provide service in throughout our 35 projects.
(4) That one of the areas we heavily rely upon and would certainly love to have as part of our delivery would be specialists such as the paediatric nephrologists, the ophthalmologists and the endocrinologists.
(5) That we'd like to see more treatment spaces through satellite centres. I think there's certainly room in the northwest for looking at satellite centres in Fort Frances, Kenora, Dryden, places like that.
(6) That when we're looking at the low health status of aboriginal people, we certainly have to look at the availability of certain services. Because of our lack of running water, we can't run the peritoneal dialysis that was discussed earlier. We tried it in one community last year. We sent up fluids and the fluids froze. It was basically garbage after that. In terms of looking at improved public health services to aboriginal people, they are at greater risk for nephropathy and they certainly do have substandard living conditions.
(7) My last one is a pitch for money. Again, it's to get to the renewed mandate of the Northern Diabetes Health Network. I think we're a committed group of laypeople who are volunteering our time to provide a service, provide some direction and certainly be advocates for northeners.
The last page that I have is basically a summary of our barriers to treatment that I've already covered. I guess the only one that I didn't really talk about was cost from a system point of view. We know that from an individual perspective our clients do incur financial hardship, that the northern travel health grant is usually not enough money. Certainly being away from home for six months is a cost to somebody. So in terms of system costs as well as individual costs, we know that more local, community-based treatment could probably save some money. Thank you for your attention.
The Chair: We are running a bit late, if people could keep their questions short, sharp and direct. We will begin with the usual short and sharp Mr Wilson.
Mr Jim Wilson: Mr Chairman, you're too kind.
I want to thank you for a very interesting presentation. It really follows on the heels of some comments that were made to this committee last week about aboriginal peoples. We had a physician tell us that because of the lack of community-based services, a number of aboriginal people -- he couldn't prove it, but he said they must be deciding to die rather than go to the cities for dialysis treatment. Statistically they couldn't figure out, apparently -- there should have been more aboriginal peoples in dialysis in the urban centres, given that they know, statistically anyway, the onset of kidney disease.
Have you had any firsthand experience that people are just giving up rather than travel to the cities?
Ms Katt: I don't think people are giving up on life. I think part of our culture is a respect for life. I know that in many ways we get very despondent about having to be torn away from our communities and our families. What I do know is that with better screening we are certainly finding clients with diabetes much earlier, which means we're not getting to that end-stage renal disease as quickly.
We've had kids run away from dialysis units and go back home. We know they get sick. We have been able to respond through other ways, like the satellite centre, placing them in Kenora. I don't think there's really a conscious decision being made of that.
Mr Jim Wilson: A quick question: The Northern Diabetes Health Network: What is your relationship with district health councils?
Ms Katt: They were involved in our development. They are certainly, as ex officio members, on our board, and were good advisers in terms of the regional planning perspective and how we fit into that.
Mr Jim Wilson: Is there planning going on with respect to future expansion of dialysis services in your area?
Ms Katt: We're waiting for the evaluation of our projects. We're just putting in an evaluation process now. I know that with the Manitoba movement we're certainly a little anxious about where we're going to place 20 people.
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Mrs Sullivan: I'm delighted to see Ms Katt again, having discussed northern health issues on other topics on other occasions. I know her sensitivity to the delivery of health services in remote areas.
Dr McCready from McKellar Hospital was with us the other day and spoke about what he saw as the success of some of these satellite centres, and the requirement that specialists from the hospital-based facilities travel to those centres to ensure that the patients are seen from time to time.
Do you have any sense of whether there are adequate visits to the satellite centres and whether there are inadequate numbers of people who are trained in gauging patient response to dialysis? Does it have to be, by example, the nephrologist who attends the satellite clinics? Could there be another practitioner who might be useful in those situations?
Ms Katt: I guess we see specialists for two main functions. One is to educate the physicians and the care givers who are there, certainly the nursing staff who have to look for certain changes in health status and behaviours of the client. Certainly, that teaching role is one of the primary functions for a nephrologist, to do some client case conferencing, to do some work such as that.
In terms of the nephrologist doing the actual client management, direct hands-on care, we don't really see the need for that as much as long as they're there for consultation. So I think our physicians are quite open to ongoing education.
Where we look at other kinds of specialists, I guess, are the ones who can deal with native people, who can do some diet education in Ojicree. Those are the kind of specialists we really need to build as a foundation so that we always have the ongoing diabetic educator.
Mrs Sullivan: I think that if we're looking at needs-based planning, the data Ms Katt has brought to the committee is very clear. The incidence of diabetes and the consequent effect on end-stage renal disease just follows a pattern.
Also, Mr Chairman, I wonder if we are having anyone else to speak on child dialysis and nephrology. This is the first time that children, I think, have been raised in our hearings.
The Chair: I don't know that we have anyone who is specifically on that. It may come up. Perhaps one of the presenters tomorrow is going to be speaking on that.
Mrs Sullivan: Then we might just want to underline the distance factor for northern Ontario children.
The Chair: Mr Wessenger, if you have a question of Ms Katt, perhaps you could put that quickly, please.
Mr Wessenger: Thank you very much for appearing today and particularly bringing to our attention the fact that the rate of end-stage renal disease is increasing much higher for the aboriginal peoples than it is for the Canadian average. I guess the clear indication of the importance of your diabetes network is because diabetes is the major factor in that increase.
There's one statistic here I was curious about, if you have any explanation. In northeastern Ontario, I noticed you have 265 clients receiving dialysis, of which 50 are haemodialysis, which would mean that the vast majority are on peritoneal dialysis. Is there any particular reason? Is that a matter of choice of the consumer or the fact that haemodialysis is not available to the people in the north?
Ms Katt: I guess it is part of client choice. We don't have the equipment to do a lot of haemodialysis, where it's much cheaper to do peritoneal, although you have to have the facilities: the running water, the storage capacity for the fluids. But I think for most clients, doing haemodialysis and having a noisy machine all the time is a little intimidating. So I think if I had a choice, I would go with the peritoneal.
Mr Wessenger: Yes, the peritoneal would also allow it to be done in-home too.
The Chair: Thank you, Ms Katt, for coming today and for the statistical data you brought to us. We appreciate it.
PETER BLAKE
The Chair: I call on Dr Peter Blake, the vice-president of the Ontario Medical Association section on nephrology. As Dr Blake is coming forward, committee members, perhaps we could be aware of the time.
Dr Blake, welcome to the committee. A copy of your remarks is being circulated. Please go ahead once the machine is, hopefully, working.
Dr Peter Blake: That's probably too small for you to see but you all have a handout, in any case.
First of all, thank you very much, Mr Beer, for inviting me to come to your committee meeting. I think it's a very important committee and I'm very glad to attend.
You've probably heard a lot from a lot of nephrologists at these committee meetings, and I haven't been present and I hope I don't repeat too much today that's been said before, but I've tried to lay down in this presentation what I think are the essential points of the problem at the moment and some suggestions. I'm not speaking here for the OMA or the OMA section on nephrology. They're essentially personal opinions, though I think many of my colleagues would share them.
I would like to say first what I don't think can be said often enough, that dialysis is a very unique and special treatment. There are approximately three quarters of a million people now on dialysis around the world. All of those people would not be alive if it wasn't for dialysis. The enormity of that is sometimes forgotten. The discovery of dialysis is analogous to the discovery of insulin or other equally important advances in medicine. There are 7,000 people in Canada on dialysis and 7,000 more who had transplants who did spend time on dialysis. So this is really a very wonderful treatment. It doesn't restore normal quality of life, but it's a lot better than the alternative.
I've tried to sum up here in 10 quick points, and you probably are aware of some of these, where this problem is coming from.
There's a 7% increase every year on average over the past five years in the number of patients receiving dialysis in Canada. The main reason for that is not so much that kidney disease has been increasing, but that older patients who previously had been allowed to die because they were perceived as too old or too sick to receive this treatment are now being accepted for it and being kept alive on it. The other obvious factors are that the population is actually increasing anyway, the general population, especially in Metro Toronto; that's a big factor. The population, as we all know, also is aging and kidney disease is mainly, though not only, a disease of older people, so there's an increase for that reason.
For all these factors, we're seeing this consistent increase. It's not exclusive to Canada. It's being seen in the United States and indeed right across the developed world. It's a universal or worldwide phenomenon. There's no sign at the moment that it's levelling off. Presumably, eventually, it will, but there's no sign of that at the moment and we must presume at least for the next couple of years ahead that it's likely to continue.
Preventive strategies are always very attractive. Prevention is always better than cure, but I think we have to remember that prevention usually isn't a quick fix and it may take 10, 20, 30 years to see the benefits of preventive measures such as you've been hearing about from the last speaker -- better control of diabetes, better control of blood pressure. It's not going to be a quick solution.
Kidney transplant was once felt to be the solution to this problem but kidney transplant rates have not increased proportionately, as you've probably heard, with the increase in the number of dialysis patients. In any case, even if more kidney donors were making their organs available, it wouldn't solve the problem because two thirds of our patients at the moment are not medically suitable for a kidney transplant. By that, I mean they're either too old or have too many other medical problems to be a good risk for the extensive surgery and medications that are involved in getting a kidney transplant. So even if we had all the kidneys in the world, two thirds of the patients still would probably need to stay on dialysis. That's an approximate number.
I think we do have some scope, however, having said that, to increase the transplant rates. Our rates have not increased despite many efforts to do so. I think the sort of things we need to consider again are things like presumed consent, which is practised in some European countries; in other words, an opt-out system, where instead of signing your driver's licence to say you will, you have to sign a driver's licence to say you won't, and the absence of a signature is taken to mean that you're saying yes. The alternative is incentive fees for hospitals as is now being practised with some success in the province of Quebec, where hospitals are provided with incentives to make sure that suitable donors' kidneys are actually harvested, and this seems to work.
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Moving on to rationing of dialysis, I think it's generally felt that this would not be acceptable to Canadian public opinion. It certainly wouldn't be acceptable to individual patients and their families when they have the problem. Therefore, we have to think in terms of 5% to 10% expansion, the numbers of patients on dialysis, going on at least for the next number of years.
Having said that, the most expensive form of dialysis, as you've heard this afternoon, is in-hospital haemodialysis. Therefore, if we've got to look for some solutions, I think it would be cost-effective to maximize the number of patients doing other forms, which I'm loosely calling self-care dialysis. That's either self-care haemodialysis, as in the Sheppard Centre, or home haemodialysis, as in the patient does it himself in the home or peritoneal dialysis, be it the standard CAPD that you've heard about or the cycler dialysis that Dr deVeber talked about.
We have to keep in mind, and not everybody will agree with this, that perhaps 40% of our patients at the moment are not capable of doing any of these self-care techniques as presently constituted. They are either too infirm or social circumstances do not lend themselves to their doing a form of self-care dialysis. They need to have it done for them.
Having presented the problem, I'm going to draw some conclusions and try and make some suggestions. The first one is the obvious one: Everybody wants more money. There's no escape from the fact that programs are going to continue to expand, and unless we introduce rationing, which I don't think is acceptable, somehow there's going to need to be more funding for dialysis. I know that's a problem, but I think that's the reality.
With regard to transplant, I think we need to look at trying to increase the rates of transplant and to consider things like presumed consent as incentives for the hospitals to retrieve donor kidneys. If we do that, though, we have to remember that there has to be a sensitivity. Any measures that would appear to be coercive to the Canadian public, to the relatives of potential donors, might have a very negative effect, so this has to be done very carefully. There should be no hint of coercion.
A third point is that we need to consider some sort of incentives for renal programs to maximize the number of patients on the more cost-effective, self-care dialysis modalities. In other words, there should be some incentive built into the system to encourage hospitals not to have everybody in the most expensive in-centre treatment and to encourage them to have more people on self-care modalities, whatever type you choose.
We also need to look at perhaps introducing some sort of modified forms of self-care. I've already said that about 40% of our patients at the moment are incapable of doing self-care as constituted because, for example, if you do self-care haemodialysis, you have to come an hour in advance and you have to prepare your own machine, which is not a simple thing to do. You have to be quite mechanical and be quite bright to do that. Then, in many cases, you have to put your own needles in, which is a difficult thing for many people to do.
I wonder sometimes if we introduced modified forms of self-care, intermediate between the hospital intensive in-care type of haemodialysis and the existing self-care, whether we would be able to take more patients out of the hospitals and put them on self-care. In other words, there would be a lesser degree of staffing than in a hospital but a greater degree of staffing than in some of the existing self-care units. I think if you take these treatments outside hospitals, they often become less expensive.
The point has been made already that we need to move from the crisis management system which we're sort of in at the moment to some sort of planning. Dr deVeber mentioned that. I think it's a very important point and other provinces, which you're going to hear about I understand, have taken a move that way.
One more point I'd like to make is that independent health facilities were mentioned earlier this afternoon. I think that may become a big issue. It's very important that we maintain standards. Canadian dialysis units are very well run. It's generally felt that the standards of medical care are much higher than in the United States. The reason for that is that many of the units in the United States are private units where there's very much a need to make a profit, and therefore there's a tendency to cut costs. This is admitted by many American nephrologists and commentators on American health care.
That doesn't happen in Canada at the moment to any significant degree because we don't work that sort of system. If we introduce any sort of independent health facility where that might be the case, it would be very important to ensure that the present high standards of care in dialysis units are maintained, proper standards are laid down and there's proper supervision of those units.
The last thing: I work in London, in the southwestern Ontario region. One of my colleagues will be speaking tomorrow in more detail about this, but I should just point out our problems. I'm dealing with a region here of 1.4 million people, including Windsor and London.
We have 420 patients on dialysis in that region, which puts us pretty well at or even slightly above the national average. Most of them are receiving their care out of hospitals in London, but there's also a hospital in Windsor giving dialysis. We run satellite self-care units, because of the long distances in that area, in Hanover and Sarnia. These, I think, perform an important role. Overall, we have 41% of the patients in the region on self-care dialysis modalities and we're attempting to increase that.
Two years ago, we had a very welcome expansion in Victoria Hospital, the biggest institution in the region providing dialysis, and that temporarily took the pressure off us a little bit, so we have not been as badly off as Toronto. Unfortunately, that unit is now filling up, and like everybody else, we're likely to be looking for help to fund the inevitable expansion that's occurs in the coming years.
Mr Wessenger: Thank you, Dr Blake. I'm trying to look through some of the various statistics here and one of the things that seems to come to light is that there seems to be quite a variation, depending on the region, on the number of patients in haemodialysis and peritoneal dialysis, and it was suggested by one of the presenters today that you could in effect have 85% of the client population on either one or the other as a matter of choice. Is that a fair reflection?
Dr Blake: I'm a great admirer of Dr deVeber. He's a former mentor of mine and I'm also involved very much in peritoneal dialysis, but my personal opinion would be that 15% is a little low to state the number of people who don't do peritoneal dialysis well. I would put it higher.
I think that many of the older patients we see have great difficulty doing it because of their general infirmity. Unless they have a relative who's prepared to do these four exchanges a day with them, it's very difficult. Perhaps with the cycler modalities, some of these people will be able to do peritoneal dialysis, but in my experience that's difficult for many of them. Personally, I would think it's a little higher.
You're quite correct: The regional differences are quite marked. That reflects, I think, the interest of the physicians. For example, Toronto was one of the centres where peritoneal dialysis was first popularized for all of the world. Dr Oreopoulos's work was pioneer work here. Inevitably, it became a centre for that and now we have over half the patients on it in Toronto. I suspect that's too many.
The worst thing that can happen from a cost-effective point of view is that a patient is trained to do this peritoneal dialysis and then fails within a few months. If your patient selection is not careful, you make a mistake and the patient goes on the wrong treatment, then you've to take him back and start all over again.
It's clearly been shown in studies that this is the least cost-effective way to practise dialysis. Get it right the first time and avoid switching modalities is a very good policy. Toronto has not had that luxury recently and they've tended to put people in peritoneal dialysis and then they have higher failure rates as a result.
Perhaps one more point about the regional issues: London, where I work, has had less people in peritoneal dialysis and sometimes is criticized for this. Again it's a tradition in a sense. London was a relative pioneer in Ontario in terms of satellite and home haemodialysis and built up big programs. When you build a satellite unit, as we have in Sarnia or Hanover, you need to keep patients going into it; otherwise it becomes cost-ineffective. There's nothing worse than having a unit and putting all the people in the town on peritoneal dialysis when you have a unit there. You should use the unit as well. So economics comes into this too.
Mr Wessenger: With respect to self-help dialysis or doing it yourself, is there much difference with respect to training someone to do their own self-help haemodialysis as compared to doing self-help peritoneal dialysis in their home?
Dr Blake: There's a big difference. Peritoneal dialysis is a fairly simple thing. You can teach most people to do it -- some people in as little as two days; some people take seven to 10 days, that sort of range -- and you can teach people who are not particularly mechanical to do it.
Haemodialysis, on the other hand, to do self-care haemodialysis takes perhaps four, five or six weeks to train them, so it's a lot more time. If you want to train them to do dialysis in their own home without any supervision, it's even longer. There's a big difference.
The Chair: Thank you, Dr Blake, for the way in which you've set out both the issues and your recommendations. It will be of great help to the committee. I believe two of your colleagues are going to be here tomorrow.
1700
ELI RABIN
The Chair: If I could then call on Dr Eli Rabin, senior nephrologist from the Ottawa Civic Hospital.
Dr Eli Rabin: Mr Chairman, thank you very much for inviting me to speak to you today. I apologize for not having a prepared report, since I just returned from meetings overseas, but I will submit one to you within a few days.
I guess we're the victims of our success. As Dr deVeber pointed out, he and I began in the very early 1960s and it has now led to a very large population of people being dialysed at the present time.
However, I'm here to talk about our successes rather than the doom and gloom that I sort of hear around the table. Approximately two years ago in Ottawa we were faced with the fact that our unit was full. The Ottawa General Hospital and Ottawa Civic Hospital were both approaching being filled and so we had to look at what we could do with our patients.
We discovered that large numbers were coming from up the valley and many were coming from the Cornwall area. We approached people within Renfrew county and, with very strong support from that area, came to the ministry. Within a short period of time, we were able to establish a dialysis unit in Renfrew, Ontario.
There are 16 patients currently receiving treatment at Renfrew Victoria Hospital. The care is being supplied by both nephrologists and general practitioners, which is a general departure from care in the province of Ontario. As a result, we have saved $60,000 a year in travel costs for these patients, when they used to come from the valley down to Ottawa. We've also saved them from the perils of travel down the two-lane highway in the wintertime. We've also established a kidney clinic in the Renfrew area, where we pick up patients very quickly and treat them and try to prevent the progression of the renal disease to end-stage renal disease.
The Renfrew unit has been extremely successful. Since August 18, 1993, when it opened, until today, there have only been six occasions when patients have come from Renfrew down to the mother unit in Ottawa, and most of these were very simple problems dealing with what's called access, that is, when you have an area in the arm where you have to put needles, where a patient has access to a machine.
In summary, the Renfrew experience has been extremely positive. We had very good help from the ministry in establishing this unit. Unfortunately, however, our projections were entirely accurate. That is, within two years from the time we began planning and within six months from the time that we began dialysis, they were filled up. Now the logical thing is to come to the ministry and say we require more money to expand the Renfrew dialysis unit since there are now four patients on the waiting list up there.
The other point about a small-community dialysis unit is that there is tremendous support from the community for dialysis. The Legion made a commitment of over $150,000 for a five-year replacement period of equipment. The grass-roots support for dialysis in small communities is absolutely fantastic. When you go out to these small communities, they're quite willing to put in as much help as possible. Unfortunately, when you ask many members from outside the major urban centres to contribute, from the outer reaches down to the urban centre, you don't get that same level of support.
Renfrew has been an excellent success story. I just wish to congratulate the ministry for seeing this project come to fruition. However, the story doesn't end there. The Ottawa General Hospital is now filled, the Ottawa Civic Hospital is now filled and the Renfrew Victoria Hospital is now filled. Where do we go from here? We have a number of options. One is that we can begin to use the existing units to their full capacity and begin to have overnight dialysis.
As you know, dialysis is done on three shifts a day, from 7 o'clock in the morning till 11:30 pm. You can open up the unit from 11:30 pm overnight and have another shift, and therefore you can accommodate more patients. This, of course, is labour-intensive and requires a large amount of investment in terms of personnel. You don't require, however, the investment of a new building. You obviously will require some new machinery.
The next thing is that in terms of what you can do to increase the ability to handle more patients, you can look at other alternatives. One has to look, at the present time, at independent health facilities as an alternative to take the load of patients out of the existing tertiary care hospitals.
The tertiary care hospitals, because of the fact that most of them are filled up, end up playing a roulette wheel game in the sense that, when you're filled, you have a great deal of difficulty slotting patients in for dialysis. As a result, you have to start doing dialysis after 11 o'clock at night or after midnight and then you run into overtime costs, which become substantial. This happens, unfortunately, at least once or twice a week, and I am told at the present time we are over budget because of these problems.
If you have an independent health care facility where you have a stable group of patients, where the budgetary considerations are quite predictable, you can now begin to offload the "stable" patients into these facilities; you can now look after the more acute problems and the sicker patients within the tertiary care hospitals for which they are designed.
I think, when I looked at the mandate, it talked about commitment and I have no doubt about the commitment of the Ministry of Health. In terms of the priorities, who knows what everyone's priorities are? However, there is one statistic you should be aware of that was recently published: it cost between $40,000 to $42,000 to keep a prisoner in a federal prison, whereas it cost over $70,000 to keep someone in maximum security in the federal prisons.
Some patients on dialysis would consider that they are in prison when they are on haemodialysis, and I've tried to say to them, "Well, it's not quite as bad as all that." Many of them are quite thankful for the generosity of the citizens of the province and the country that allows them to have their lifesaving treatment go on. They always hope that the priority within the population would be towards them, obviously, because their life is at stake, and they have instructed me to tell you that they hope you will continue with this priority for them.
Our problems are very difficult. As Dr Blake mentioned, we have an aging population. All of us, when we reach age 90, will have only 50% kidney function. Each of you sitting here is losing a little bit of kidney function every day, and if you have a little bit of kidney disease now, it accelerates as you get older, and that's why the aging population presents a major problem. If you add to that the diabetic factor, you now accelerate the process even more. That is why we are seeing more and more patients coming to dialysis.
Also, the congenital disorders are now beginning to occupy a large proportion of our patients. Approximately 10% of our patients have congenital diseases for which we have no treatment or cure at the present time, and therefore the makeup of the population is such that we are being forced to take more and more people and we don't discriminate, obviously.
The transplantation numbers, as you've heard, are down because of the alcohol laws and the seatbelt laws. That's a good thing in terms of lifesaving laws; it's a bad thing in terms of not having enough donors for transplantation, and so this balance keeps going on and we try our best to retrieve as many organs as possible for transplantation.
In terms of cost reduction in the present units, there is one area where there is a major possibility, and that is by having altered labour categories within the system. In the United States, facilities are now moving towards phlebotomists and technicians rather than nurses.
I know this might be heresy and it might be anathema to many people, but instead of having one nurse per two and a half patients, you may have one registered nurse for four patients and have an altered class of labour looking after your patients for phlebotomizing them, that is, inserting the needles. This of course would require negotiations with hospitals etc, but that is one manner in which you can save money.
There are other areas where we could possibly save money, and that is to take a very hard look at how many tests we order on patients and how many drugs we use. Having mentioned drugs, there's one thing you can do for the patients on dialysis. Please put back the vitamins and the calcium on the drug list. For them it's absolutely necessary.
This is not a supplementation for them, where they buy an over-the-counter drug simply because they want to treat their arthritis or something like that. They need the drugs to prevent bone disease; they need the vitamins to put back the vitamins they lose during dialysis. Many pensioners can't afford these drugs and they don't understand why they were taken off. They don't know who gave the advice and why the advice was taken to take those drugs off.
If I can make one plea to this committee, if you can do something: Put the calcium and the vitamins back for the pensioners on dialysis. I think with that I will stop, because I don't want to exceed the time, and answer your questions.
Mrs Sullivan: Thank you very much. We are hearing fairly consistent issues from around the province with respect to the gap that's narrowing between the supply and the demand. We've heard information with respect to delaying the development, through screening programs and through other actions that can be taken; considerable emphasis on treating the patient closer to their home through satellite services and through services that, where possible, can be done out of the hospital; increasing the number of transplants and the associated ethical issues that are included in that.
1710
But one of the things that we constantly hear is the need for a comprehensive program, a strategy, rather than the kind of crisis management that has existed. Today we've heard, I believe for the first time, the word "agency" pop out of somebody's mouth. We have just gone through considerable pressure with respect to the government on a cancer agency. I wonder if you'd like comment on the viability on an agency for kidney disease.
Dr Rabin: Agencies in general are probably a very good thing. The problem is that you may have competing interests on the agency and which region has greater influence within the agency versus another region. I think one of the biggest problems is that if you take a look at the Toronto area, it'd probably have much more clout than the area of Ottawa. It might have much more clout than the northern Ontario area.
I'd be very leery about agencies and their compositions and how they arrive at decisions, because in my experience there's a lot of lobbying that goes on and decisions are put out that are sometimes detrimental to the whole process.
Mr Jim Wilson: Thank you very much, Dr Rabin. I thought your presentation was excellent. I would disagree on one point. One of the reasons we're having these hearings is that I asked for them because of the lack of commitment from the Ministry of Health in this.
I happen to live in one part of the province that doesn't have any special designation. I'm not in eastern Ontario, so going to the Ministry of Health to get any special funding is extremely difficult. I don't live in northern Ontario, God bless them, but they've got 12 satellites up there. I live in the shadow of Metro Toronto, with patients who have to drive just as far as many of these other patients, and there's no special niche for my constituents and never has been, because our statistics are always shown in with Metro Toronto.
I've got people driving down dangerous highways for two hours, coming down here to Toronto. I've got a guy taking a bus, which one of these days he's just going to stop doing, I think. He's on the bus at 8 in the morning in Alliston and it's 8 at night before he's back at home. That's why, certainly in the central Ontario area, we think there is a crisis.
I assume by your discussion that a lot of those conditions existed in Renfrew before you got your satellite.
Dr Rabin: My suggestion to you would be to find a nephrologist from your area who may have grown up in your area or who has some sympathy to your area, from the Toronto area, and get him to work on your behalf. I don't know much about the Toronto organization in terms of nephrologists, but I know they sort of centre themselves around the teaching hospitals. Perhaps you may be able to find one or two of them who might be able to convince their colleagues that they do something for your region. The approach may be to have someone from your region who may be a nephrologist or closely allied with nephrologists from there.
Mr Jim Wilson: I appreciate the suggestion. Just so you'll know, though, we've had public meetings there and both nephrologists have appeared. Dr Mendelssohn, for example, has been to the public meetings. Part of the problem is, and why Toronto hospitals are quite interested in -- and have been very supportive, to an extent anyway -- helping us out there in Simcoe county, is that they're getting tired of having our patients come to Toronto. We're clogging up their system is their view. I appreciate that they are trying to be helpful.
One of the frustrations I've had too is that I've watched as the member over the years, in Alliston, for example, and Collingwood. Let's just take Alliston very quickly. There was probably one machine there about two years ago; now there are three machines in the area -- four if look just outside of Alliston -- serving only four patients. We've got about eight more patients on top of that driving to Toronto.
It seems to me it isn't very cost-effective. Every time I complain, the response is -- I managed to convince one hospital, anyway, in Toronto to give us a machine for patient X who just can't handle the ride any more. To me, that's just a stupid way of approaching this whole problem.
Dr Rabin: We do it the other way around. I and another nephrologist go up to Renfrew. Each of us goes once a week. We have three general practitioners who work with us. The patients don't have to come down. I don't know how far Collingwood is from Toronto and what the cost-effectiveness for a physician is. But certainly I think it's easier to transport one physician than it is to transport eight to 12 patients over that area. If cost is involved, that is something that the hospital boards, or however the financing works out, may have to look at to help you in that dilemma.
Mr Jim Wilson: The point is that we've got four machines in town, and a lot more patients than that who apparently do qualify for in-home haemodialysis. They're not allowed to use the machines that are already in town.
Dr Rabin: I don't understand why they can't use them unless the ministry says it won't fund the operating costs, and then that becomes the source of an application to the ministry to say: "We have backup for the care of these patients. Please fund these machines and fund the staff for the use of these machines so that we can service these patients."
Mr O'Connor: Certainly part of the committee hearings that has been beneficial for members of the committee to take forward some of the concerns that my colleague has is that we've had an opportunity ourselves to get a little bit better educated, and in going through some of the process, we've then been able to see where somebody has brought forward to us earlier today -- Dr George deVeber, thank you for this here. You've been able to spell out, for example, the labour costs.
I guess some of the concerns that my colleague would have then, for example, when we take a look at some of the work that was done -- I noticed your head pop up when I talked about this. I think it's important. But at the same time, when you take a look at, for example, all the Legions that were involved in it, they come from a lot of different small communities like Chalk River, Deep River, Petawawa, Pembroke, Barry's Bay, Eganville, Cobden and Renfrew, which all would then of course go to the Renfrew Victoria Hospital.
What my colleague is suggesting is not that type of an approach, not the hospital-based type of approach. Is there not a way that we could look within the community and go to the community itself? When you take a look at these numbers, if we could develop a network that would allow us to use some treatments that we can get some volunteers to maybe help out in, then it's utilizing the machines that Mr Wilson is referring to within his community. I guess it's a little different approach, but still it's what we're trying to take a look at here.
Dr Rabin: Under the existing framework, dialysis is hospital based. Therefore, if you have some sort of dialysis network in Collingwood or wherever, it has to bear some relationship to a hospital in Toronto unless you decide to have that dialysis unit have a relationship to a hospital in Collingwood, which may be related to a hospital in Toronto.
The only way to establish that kind of a network is you have to relate those patients to a centre, either to a community hospital or to a tertiary care centre. You just can't willy-nilly, out of the heavens, say, "I'm now going to dialyse four patients up here," because my understanding is that the Ministry of Health requires some sort of structure, which is very good in terms of control of the type of treatment people are getting.
Be very careful when you look at costs. Sometimes those costs don't factor in hospitalizations which are necessary for, for instance, some patients on CAPD. When they might develop peritonitis or other problems, the hospital costs that they incur aren't necessarily added into the bill.
There have been many studies done, both in the United States and Canada, which compare the costs. Sometimes the costs for CAPD aren't that much lower than that of haemodialysis when you factor in the costs of hospitalization, because as Dr deVeber and Dr Blake pointed out, about one third of CAPD patients drop out, and as they drop out they get sick, they become hospitalized and they incur those kinds of extra costs. So the costs can be quite difficult to determine.
But if you want to establish a network, you have to get a nephrologist and you have to get a hospital net. Those two are principal in aligning themselves with a mother centre, or whatever it is, and then you establish that network.
I don't know how it operates here, but I can assure you in Renfrew it was very pleasant. The grass roots came to the rally, the Legion came to the financial rally of the community. Everyone worked together, got together and said, "We need it, we want it and we're going to support it." Within a year and half the centre was established, and it has been very successful. I think that is the message I'm trying to bring to you: You can be very successful, but you have to get your community behind you.
Mr O'Connor: I think that's what we heard when we heard from the chair for the central east regional study that's taking place right now, going out there into the community, developing some of that. Of course we also heard from the women from the north how in some communities in Ontario the process doesn't quite work, whether you're tied to a hospital or not; for example, the aboriginal community, where they don't have some of the very basic facilities.
The Vice-Chair (Mr Ron Eddy): Thank you, doctor, for your presentation. We appreciate it.
1720
MORE PROGRAM OF ONTARIO
The Vice-Chair: The next presentation will be by the executive director of MORE, the Multiple Organ Retrieval and Exchange Program of Ontario, Ms Cheryl Rosell. Welcome.
Ms Cheryl Rosell: I want to thank the committee on social development for the opportunity to address the group. The packages that were distributed for all the committee members include my report, as I'm reading it, and the footnoted references. I included them because these are not always easily accessible through other means, so it was easier just to get them for you right at the beginning.
I've also included a document called MORE Facts, which we've been distributing for Organ Donor Awareness Week, which in fact starts today. They provide the transplant and donor rates over the past three years and give you some idea of what those rates truly are.
The MORE Program of Ontario is a Ministry of Health-funded program established as a not-for-profit corporation in April 1988. MORE was established based on recommendations of a Ministry of Health task force in the early 1980s. MORE was to ensure fair and equitable sharing of organs -- that includes kidney, liver, heart and lungs -- among the five transplant regions of Ottawa, Kingston, Toronto, Hamilton and London. MORE was also expected to carry out both public and professional education to increase awareness about the need for organ donation.
First, I'd like to address our computer system. MORE established a state-of-the-art computer system for organ sharing which went live in 1990. This included capital grants for equipment purchases to assist the histocompatibility labs for testing. In the past year, with a special Ministry of Health capital grant, MORE has also added screens for testing by DNA matching as a way of improving the donor-recipient match. This adjunct will put Ontario in the lead in North America for organ sharing based on best match.
Each renal transplant program has assistance with entry of information about recipients by MORE staff who work in the transplant centre facilities. They are trained in providing ad hoc reports to the centre for review of graft survival, rejection episodes etc. They also provide reports for use in follow-up clinics. Transplant information clerks' activities are regionally modified based on the needs of the individual transplant program.
Transplant programs use the computer to establish which patients on the waiting list best match donors. Sharing between regions becomes particularly necessary for a kidney patient who has become highly sensitized, meaning that unless the match is perfect, they have a high chance of organ rejection. Each donor is compared to all highly sensitized renal patients in the province to facilitate sharing. This sharing came about with the advent of the MORE computer.
The main thrust of MORE's educational effort has been to the health professionals. The Ministry of Health communications branch has assisted MORE with grants for special projects, including development of a slide and video program -- and the video was overdubbed in eight languages, including Ojibway, since I heard that mentioned -- and a new workshop has been developed for health professionals on approaching donor families.
In case you're wondering why we decided to focus most of our effort on the health professional, the reasons for that included that in MORE's public survey in 1991, which is included in your package, the survey demonstrated that most of the public are in favour of the concept of organ donation.
Also, there are several public agencies that currently provide public education on the need for organ donation, including the kidney foundation, liver foundation, local Lions Clubs and the Mutual Life insurance corporation, but MORE is the only agency that directly works with the health professional and the hospitals to increase their awareness.
Even with a positive attitude by the public, we all recognize that if a health professional fails to introduce the topic of organ donation to the prospective donor family, the donor will be lost. The ministry's task force report emphasized the need for ongoing education in hospitals. This was specifically identified by the donor hospitals as a need, and critical for increasing donor rates.
MORE's 1994 survey of family practitioners identified their reluctance to approach donor families and their discomfort with the grieving family. What we identified was that basically one third of the physicians were prepared to approach a donor family, but clearly two thirds were not. Generally, the results indicate that they were reluctant to approach because they were uncomfortable dealing with the grief of the family, and rather than seeing this as helping the family through the grieving episode, they saw it as an infringement on that grieving process.
MORE's early assessment of most hospitals was that they needed assistance with policies and procedures and their implementation before donors could be increased. From 1990 until now, we've been working on that.
Since the amendment to the Public Hospitals Act in 1990, hospitals now have their policies and procedures in place, with assistance from MORE's regional communication coordinators, or RCCs. These are registered nurses who work in communities across the province providing education.
In 1993 MORE had a pilot project of decentralizing the RCC position. It moved from a full-time position located in the city where the transplant program was located to several part-time positions in the communities to assist with local organ donor awareness initiatives. An example of this can be seen at the Hotel Dieu Hospital in Windsor. Before hiring the part-time RCC there, they utilized the RCC located out of London. At that time they had zero or one donor a year. In 1993, in the last eight months, they had seven referrals and five actual donors.
While not every hospital is expected to experience this growth with decentralization, it does demonstrate that results can be achieved with a visible, ongoing education program within the hospital. At MORE it is recognized that if each hospital identified one more donor a year, the waiting list would be significantly reduced and, within two to three years, equalized. To achieve that result, MORE has to ensure ongoing visibility about organ donation within each hospital, not just the transplant centres.
The new workshop for health professionals on approaching donor families will be presented province-wide by these same RCCs for their co-workers. Health professionals carry with them personal feelings about death and organ donation when they make the request of the family. While these feelings cannot be erased, we hope to teach how best to accept them as personal feelings that should not be put upon the conscience of donor families.
In June 1992, then Health Minister Frances Lankin announced at the MORE annual meeting that there would be an expectation for MORE to audit donor activity and compliance with the 1990 hospital act regulation within the hospitals. This is being initiated during this fiscal year. MORE will be able to establish a hospital's donor potential and provide feedback to that hospital regarding its compliance. It is hoped that Oshawa General Hospital will be the pilot site for this initiative during the summer months.
Establishing the donor potential within Ontario will be a critical benchmark for the program. The report on comparison of deaths by brain trauma indicates the significant decrease in brain deaths experienced as a result of motor vehicle accidents, yet the number of potential donors should still be much greater than what we currently achieve. Our goal is to identify how much greater.
With these new initiatives MORE is predicting an increase in organ donor rates of 10% within the next 12 to 18 months. The other increase being experienced in renal transplantation is in living-related organ donation. This can afford the recipient a better match, a healthier organ and better results due to removal and transplantation done at the same time.
While the focus of the RCCs' educational efforts have been with the health professional, MORE has also been active in public programs. In 1992 MORE evaluated some of our activity with these results.
Media coverage of health issues has been intense during the last decade. The majority of stories concern fitness, heart and stroke problems, cancer and AIDS, issues which affect hundreds of thousands of people across the province. Organ donation and transplantation directly affect about 2,000 people in Ontario. The altruistic act of donating organs, combined with the miracle stories of the results of transplantation, make organ donation and transplants a popular media topic, despite the relatively low number of people it affects as a health issue.
Budget restraints have prevented MORE from engaging the services of a professional media tracking company. Copies of organ donation and transplant stories in the print media are received through the RCCs, who monitor media in their areas, through the Ministry of Health press clips, which they provide to us, and through monitoring of the three dailies in Toronto.
This casual clipping service, however, still indicates a tremendous amount of coverage on organ donation and transplants. For example, over a three-month period in 1992, dealing only with the major dailies in the five transplant regions, there were close to 3,000 column inches of copy. The stories covered all areas of the donation/transplant process, including stories from recipient and donor families, ethical issues etc. To put this in perspective, each page of the Toronto Sun is about 60 column inches. That means that if we put all the organ donation stories for 1992 into one copy of the Sun, it would be about a 50-page edition without pictures.
1730
From September to November 1992 MORE monitored a number of television features in Toronto, Hamilton and Ottawa. During that time, there was a total of 60 minutes devoted to stories about organ donation and transplantation on news shows in these areas. This does not include coverage of these topics on the US-based shows.
Local television news is generally one hour long. Half of that time is taken up with commercials, weather and road reports, updates, promos, sports etc. This leaves 30 minutes for hard news, and about half that time is traditionally given to international and national stories. This leaves a 15-minute window for local and regional news: about 300 minutes during a month of broadcasts, or 900 minutes during three months. Organ donation and transplantation received 60 minutes of the 900 minutes, or a little more than 6% of the time allotted to something which affects really a small number of people compared to many of the other health issues.
If MORE had to purchase that television time at a cost of an average $1,000 a minute, it would have cost the program $60,000 and been prohibitive. Television producers point out, however, that news coverage is worth a lot more in that it is more likely to be watched. As we all know, during commercials the audience is likely to leave the television set or change channels.
I'd also like to address the issue of legislation. There have been a number of ideas suggested regarding changes to current legislation to increase organ and tissue donation. Even while I was here this afternoon, the most popular one of these of late has centred around something called "presumed consent." This assumes that unless someone has registered specific wishes against participating in organ donation, the organs and tissues will automatically be taken. This demands that each person have a complete education with regard to what they're not opting out of, in the language of their choice, and they must be provided an easy opportunity to opt out.
MORE is in the process of completing an extensive document on this topic which includes a thorough literature review. We hope this will be available within the next month.
The major result of our study is that we need an in-depth study in Canada about Canadian attitudes towards this concept, and MORE hopes to undertake this research once we find funding. There are some countries with very positive results from presumed consent, and more of them with less positive results. Success was achieved generally in small geographical areas with homogeneous cultures, and this is not the picture of Ontario.
The Law Reform Commission of Canada recommended, when it looked at the various legislation, including presumed consent, that "the general express-consent model of tissue procurement from deceased donors should be maintained and strengthened, as a preferred model for public policy."
Whatever legislation Ontario has or whatever Ontario legislation is undertaken, the critical components are that it not include a method of opting out of making the request because of a grieving family and that there must be provisions for the regular audit of the efficacy of that legislation. The current legislation does not prohibit organ donation. It's that there is not a full utilization of the legislation that's there.
MORE has requested the inclusion on the new health care card of direction regarding organ donation. This would ensure information being distributed to those who do not drive and would provide the record for the hospital. While a driver's licence is not always retrieved upon admission to the hospital, we all know that the patient's health card is. This process of ensuring that a choice is made one way or the other is sometimes referred to as mandated choice.
We've also heard references this afternoon to the Quebec experience, and I'd like to expand upon that. You may have seen articles about the Quebec experience where they refer to paying referring hospitals $500 per donor and retrieval hospitals $4,500 to reimburse costs. To accurately evaluate this initiative within Ontario, there are a few facts to bear in mind.
Of the $4,500 paid back in Quebec, $2,000 of that is for irrigating solution that the hospital must provide. In Ontario these solutions are brought by donor coordinators and therefore are not an incremental cost that is borne by the hospital. When talking with some of the staff in the Quebec transplant program, they have identified that it's not the money that increased donation, but rather the promotion that went with the money.
While Quebec did achieve a dramatic increase of donors, to 106 in 1993 versus 66 in 1992, we also remember that their donor rate was 98 in 1991. In 1992 all provinces saw a decrease, including Ontario, although ours was not as dramatic. Since, all provinces have also experienced an increase in 1993, including Quebec.
What Quebec has needed and what we need to observe is whether or not there is a demonstrated, sustained annual growth to be able to effectively evaluate their activity. They were experiencing problems with donors only being renal donors and not multi-organ donors. Much of the publicity they received in fact quoted the numbers of increased organs as opposed to the number of increased donors. This was a bit misleading in the press.
Lastly, each province defines "donor" differently. In Ontario, a donor is a patient who has been declared brain-dead, where consent has been obtained and organs were retrieved and transplanted. While not every province will define their donors quite so clearly, we do know that in many of the provinces, their donor numbers are based on patients who are declared brain-dead and where consent is obtained, but not necessarily where organs were retrieved and transplanted.
We also have to bear in mind some of the national initiatives to increase organ donation. The Canadian Coalition on Organ Donor Awareness has a major project under way. Taking the lead from programs such as those for teaching about recycling, they are developing a cross-curricular school program on organ donation to be piloted in 1994 and launched in all provinces in 1995. The curriculum adviser who is developing this, by the way, is located in Guelph.
This will assist MORE in attempts to reach the varied multicultural groups that are untouched by programs in French or English. It is hoped that by students taking material into the home, they will be able to translate the need for organ donation into both the language and the culture of the family so that discussions can take place.
Briefly in summary, I'd like to say that the MORE program is acutely aware of the impact of the ever-growing waiting list for renal transplant patients. Several initiatives are being implemented and they will be evaluated as we address the problem. Sharing for highly sensitized patients will continue. Once on the waiting list, MORE will ensure that patients receive organs in a fair and equitable manner.
MORE will continue initiatives to enhance professional and public education programs based on the needs of the community, and these will be monitored for efficacy and modified when and as needed. Thank you.
Mrs Sullivan: Thank you, Ms Rosell. I'm very interested in the presentation you've made today. I think we're all delighted that you were able to be with us.
As you know, I have contacted your organization with respect to the concept of presumed consent and was interested to know of the study that you are doing. We'll be looking forward to seeing that.
I'm interested as well in the issues that you've identified with respect to professional reluctance to approach families and friends of the potential deceased with respect to possible organ donation. I wonder if you'd comment on how the issues are dealt with, say, in medical school: on whether in fact those discussions are being left too late in the process -- at the time of death rather than routinely during visits to the family practitioner or whatever; on whether in fact your view might be that the physicians, particularly family physicians, may not be comfortable with the actual determination of brain death; and on whether the facilities in community hospitals are at a sophisticated enough level that one would expect that donations could be as readily made, say, at the Oakville hospital as they would be at the Toronto Hospital.
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Ms Rosell: I'll start with your first question.
Mrs Sullivan: I always get them all in so that he doesn't cut me off.
Ms Rosell: In terms of what is occurring in medical schools right now, it really varies by medical school. Generally, all of the transplant physicians and surgeons are also involved with teaching at medical school, and what they ensure is that when the students are given patient scenarios they always build a scenario around a transplant, potential transplant or potential donor.
At one point I did ask whether or not this was worth pursuing to get as a definitive part of the curriculum, and one of the things that was shared with me was that there are so many issues right now to be put in the curriculum that we probably were achieving more with having it done in this manner than to fight a battle to try and get 15 minutes specifically for organ donation or transplantation.
In terms of approaching the families, this is a major concern and issue and why we focus everything, as much as we can, within the hospital. There are many people who are still not comfortable around the whole concept of death, and there are some physicians who, when they were an intern or a medical student or a resident, if they saw a bad situation occur with a donation or with a transplant recipient who didn't fare well, that's what stays with them, not the successes. The reluctance is, "Oh, why put the family through that?"
Certainly one of our major thrusts this year with organ donor awareness is to the health professionals: "Don't make that decision on behalf of the patient or on behalf of the patient's family. It's their right to make that decision." But for them to have that right, you have to present the scenario to them. We've certainly been trying to do that.
We also, where possible, encourage hospitals to have someone other than the physician make the initial approach or initiate the discussion with the family. Sunnybrook hospital has a very effective program where the chaplaincy is to be called with all deaths so that the chaplain is responsible to ensure that organ or tissue donation has been considered.
We know that in several hospitals they utilize the social workers, and sometimes in the ICUs it's the ICU nurse who has been close to that family, taking care of the patient, who initiates a discussion about it. What we have tried to do, and what we will do as we decentralize our teaching staff, is to encourage a hospital to come up with the best group to do the approaching of the family for that hospital, and not say it's a person province-wide.
On the comfort level about brain death, neurosurgeons and neurologists generally are the ones who diagnose brain death, but in fact any physician can diagnose brain death. But unless a physician is dealing with this all the time, they're very reluctant to make that commitment. We do try and provide education on an ongoing basis about how to diagnose brain death and, for the nurses, how to support the doctor in diagnosing brain death.
Actually, after having our educational people out there for five years now, we're just at the point where the physicians are coming to us. Before it was always us having to beg them to let us in, and now they're coming to us with, "Let's hear what you had to say again, because maybe now we're prepared to really start hearing that." But there's no question that, outside of the neurology or neurosurgery field, there is a reluctance to embark on diagnosing brain death.
To the credit of the transplant hospitals, I will say that very often what they will do where there is not a neurologist or neurosurgeon on staff is they will say, "If you think this person is going to be brain-dead or is brain-dead, transfer them in as a transfer of a patient you want assessed and we'll do the diagnosis or we'll do the assessment of brain death here." That has made a tremendous impact on donor rates.
In eastern Ontario, in the Ottawa region, they have in fact been able to achieve significant increases in organ donation, because their RCC has really been out there and working for five years and been accepted. It's a fairly small, containable, workable area for one person, and the hospitals, particularly the Civic, have initiated a process where you've got a donor coordinator who actually makes the request of the family. Those initiatives have been very positive.
In terms of the facilities in the community hospitals for being able to maintain a donor who has been diagnosed as brain- dead, again the transplant centres have been pretty open with the community hospital, saying, "If you can't do this, you can transfer them in." Toronto General does keep a bed in its ICU for donors. But I think we also have to say that oftentimes reluctance by the community hospital is an issue of they just haven't done it before so they're scared to make that first leap of faith.
About two years ago Ross Memorial Hospital in Lindsay undertook to do an organ donation and have the retrieval there in the hospital. In talking with the unit manager, because he knew people were going to question the expense etc, he did a cost analysis within the community hospital. By rearranging some surgery and doing some shuffling, basically the cost to the hospital was $1,000 to do the organ donation. What they were saying is if that you're looking at doing one or two or three of these a year, it's not an insurmountable cost for the hospital to absorb.
Is that all? Have I answered your questions?
Mrs Sullivan: I don't think the Chair is going to let me get away with anything more.
The Vice-Chair: Thank you for the information.
Mr O'Connor: It's interesting you mentioned Ross Memorial. That's where my young lad was born seven years ago.
In reading some of the information that you put together, there was a program on the weekend that showed to me the concern over the black market down in Latin America over organ retrieval. It's amazing. We may talk about it up here, for some of us who have had the opportunity to discuss with some people who are better informed than perhaps a lot of the misinformation that is circulating out there. We really have a lot of barriers that we need to overcome, not only here but abroad.
I think the only way we're going to overcome some of the concerns is through education. Having a week set aside to talk about it I don't think is even enough. I think the media need to be involved in this process a little bit more and held accountable for not being able to promote something that actually will be cost-saving in the end and offer a much better and healthier lifestyle people can have through an organ transplant, as opposed to continuing, in this case, dialysis, though the organ transplant isn't for everybody, because it doesn't quite work out that way.
Ms Rosell: Just to comment on the black market issues, the program you saw on the weekend, I don't know if that was the one that was a combined BBC and CBC program. There was one on several months ago about that. There was something on one of the scandal sheets recently too, where someone's child, when they got ready to bury him, all the organs had been taken. The family assumed that they had been used for transplant. You can't take solid organs out without the heart beating. There's that window of opportunity when they're brain-dead, the heart's going to stop and you get them out at that time.
Oftentimes those organs may be taken for other things, like cosmetic purposes, to do experiments in some of the research labs etc. It's unfortunate very often now that because transplant is such a high-profile issue, there's an assumption by many less-educated people that this is where they're going. You're right that the education never ceases.
I chair the committee of the Canadian coalition's program on schools. I have been vehement in getting a school program under way, because we started to look at doing programs for various ethnic communities. We got the list of the ethnic communities within Ontario, particularly within Toronto. There's this huge list. In the States, their idea of doing an ethnic program is for African-Americans. We looked at African-Canadians, but you have African-Canadians from Africa who require one program, African-Canadians from the islands who require a different program and African-Canadians who just happen to be black people born in Canada for many generations but who require a different program altogether.
We knew there were no resources available to address all those different ethnic issues, which is why I have been committed to the school program, because I think that's the only way we can begin to get the message into so many culturally diverse homes, where the discussion takes place. If I go into a Chinese home and try to talk to them about organ donation, there are language barriers; I don't know and understand all the cultural issues. Yet the children do and they can initiate those discussions, and it's in a much warmer environment than someone from the outside going in and trying to do that. That's what we're trying to achieve.
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The other thing is, our general promotion is that Organ Donor Awareness Week is every week. Even though there's a greater participation by many other agencies for Organ Donor Awareness Week, we do other promotional events. Last year at Christmas in fact, we put together a very specifically targeted Christmas public service announcement. We just sort of tried this holiday-theme PSA and we were quite dumfounded at the response we got, so this year we are targeting for the major awareness programs: April for Organ Donor Awareness Week, which is the classic one; Thanksgiving will be targeted as the time when the recipients give thanks to those donor families very specifically for what they've been able to achieve; and the Christmas, again looking at the gifts at Christmas and that these people have had the gift of life. Those are some of the initiatives we have.
For us it's often an issue of not just doing programs, but we want to manage the programs and manage them well. We feel like what we're trying to do now is those programs which we feel we can manage and be able to be effective at the same time.
The Vice-Chair: Thank you very much for the presentation you've made. We sincerely hope that your awareness programs result in increased donations.
ARTHUR SHIMIZU
The Vice-Chair: The last presenter is Dr Arthur Shimizu. Welcome to the committee.
Dr Arthur Shimizu: Thank you very much. I'm a nephrologist running a dialysis program in the Niagara Peninsula, which is a non-university centre, and I'm just going to give you my perspective.
I would like to thank the committee for inviting me to say a few words about the growing crisis in dialysis service in Ontario. I'm going to read this because I've got it down to exactly 15 minutes. On this issue I would like to make three simple points. I'm going to expand on them, however.
Firstly, a major concern of mine is that with the mounting fiscal constraints imposed on the hospitals with expensive dialysis programs, dialysis may not become available to all who may need it. Two constituents I am particularly concerned about are the elderly and the aboriginal peoples of the north.
Secondly, I wish to make a few comments, briefly, on some possible strategies which could be employed to reduce the heavy financial burden of dialysis programs in Ontario.
Lastly, I would like to raise the problem of renal failure among the native populations of the north.
With regard to the first point, I would like to quote Dr Dimitrios Oreopoulos of Toronto Western Hospital, who states in an article to be published soon:
"The worldwide increase in dialysis of the elderly suggests that in the early years when access was limited, these people were excluded from dialysis. With more liberal acceptance criteria, most of these patients are now accepted. However, with restrictions in health care spending the first group to be considered as expendable are the elderly, as Kilner demonstrated in his survey of the directors of 452 dialysis units in the United States. Financial restrictions have a powerful impact upon patient selection for dialysis. While today only 10% of dialysis directors would reject patients on the basis of age, 85% indicated that they would do so under conditions of significant scarcity. A recent survey of directors of Canadian kidney units showed that 10% of them would apply age-limited criteria today." He goes on to say, "Dialysis is withheld either on the initiative of the family doctor or internist...or by the nephrologist who is responding to the host institution's financial restrictions."
Dr Carl Kjellstrand, in an editorial in the current Canadian Medical Association Journal, April 1, 1994, entitled "Hemodialysis in Canada: A First-Class Medical Crisis," makes the observation that the increasing numbers of patients requiring dialysis are elderly and the situation may be worse than that indicated by Dr Oreopoulos.
He states, and I quote, "We are not even close to providing the necessary care for all elderly patients who need dialysis." He says this because the rate of growth of the people between 65 and 74 is still steep. It hasn't plateaued. If you see a plateauing of that entrance of new patients on to a dialysis program, then you have adequate treatment for that group.
This discrimination against the elderly occurs despite the fact that I believe section 15 of the Canadian Charter of Rights and Freedoms forbids such discrimination on the basis of age.
I believe that the government and the Canadian society must provide for the elderly the same quality of care that younger members receive. The practical implication of this, of course, is that governments must augment the dialysis facilities where the need emerges. This means in the first instance, I believe, that Toronto, which is the area most in need, should have additional dialysis stations.
I believe that the detection of renal failure may be much less among the natives of the north since renal failure could be said to be a silent disease, a silent killer. History and physical examination do not lead to the diagnosis of kidney failure. One must do blood tests for urea and creatinine to make the diagnosis. If one does not seek a physician, then kidney failure is not detected, and a lot of our native people do not seek physicians.
We know from the kidney registry figures in the United States that the native Americans have the highest rate of all of the various ethnic groups, including blacks, of new patients entering into the dialysis programs in the United States: 324 patients per million population as opposed to Caucasian American rates of 125 new patients per million population.
In our Canadian figure it's about 105, 106 per million population for Ontario. Dr Dyck of the University of Saskatchewan has made the same observation among the natives in Saskatchewan. I believe that efforts should be directed to determine if native Canadians are receiving the same access to dialysis treatment as other Canadians.
My second point is to discuss briefly with you possible strategies to reduce the cost of dialysis.
The first one is reuse of dialysers. The single most expensive item in the dialysis treatment is the dialyser, the filtering apparatus, costing between $25 to $40 per dialysis. It is used once and discarded, very environmentally unfriendly as well. It can be reprocessed:
It can be reprocessed five to 10 or more times, and in the United States they may even do it up to 25 or 30 times, and thus lead to substantial savings.
When automated reprocessing equipment is used, it has been proven to be safe and its efficacy as a dialyser is maintained.
Currently only 10 units out of the 80 units in Canada reuse dialysers and only two units reuse dialysers in Ontario -- and mine isn't one of them -- while in the United States 85% of all dialysis facilities reuse dialysers.
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E. Baris and M. McGregor, in the January 15, 1993, issue of the Canadian Medical Association Journal, carried out a thorough review of the literature on reuse of haemodialysers and concluded that only five uses might save up to $3,629 per patient per year. There are currently 5,050 haemodialysis patients in Canada, 40% of whom are in Ontario, by the way. If 80% of these patients' dialysers were reused, there would be a saving of $14,650,000 per year per patient. If you take into account the escalating numbers of patients coming on to dialysis, you can just do the mathematics and figure that out.
The second item which may help to reduce costs has something to do with manpower and is the employment of nurse practitioners in dialysis. This is akin to the use of midwives in obstetrics. Since the dialysis population is growing at the rate of 5% to 10% over the previous year, more nephrologists will be necessary in the future. Some of this need, I believe, can be accommodated by training nurse practitioners in dialysis; not all, of course, but some.
In 1974, when I was still in Hamilton at McMaster, I initiated a nurse practitioner program and since that time the original two nurses have increased to about four. I believe Hamilton has the highest patient-nephrologist ratio of any university because they have 300 patients and they have only seven staff people. That's a lot of patients one physician looks after and that's partly because it's nurse practitioners.
They can function as well as a resident in nephrology -- that is a doctor in training for kidney diseases -- solving some 85% to 90% of all problems. Nurse practitioners must be introduced initially in large university centres since I believe at least three nephrologists are necessary prior to the institution of a nurse practitioner program, which means that a centre must have at least 150 patients or so before one employs a nurse practitioner and they should work under the supervision of nephrologists.
The third strategy that one could employ to reduce the cost of dialysis is the concept of bulk buying. Since Ontario has 40% of the total dialysis population in Canada, in some way this should be turned into cost advantage for Ontario. I believe British Columbia does something like this to a certain extent.
Capital equipment, disposable items such as dialysers, tubing, dialysate solutions, peritoneal dialysis equipment, monitoring equipment, technical contracts for equipment maintenance could be bought by a central agent on behalf of all dialysis units in Ontario. Standardization of equipment and limitation to certain numbers of items should be jointly worked out by a body made up of providers of dialysis: administrators, nurses, technicians, physicians and probably patient representatives, such as the representative from the Kidney Foundation of Canada.
The last point I wish to make concerns the plight of the native people in the north and kidney failure. Native people have a high incidence of kidney failure, as I have previously pointed out.
Much of this is due to diabetic kidney disease, the type referred to as non-insulin-dependent diabetes. This type of diabetes occurs usually in individuals over 40 years of age but, among the native population for some reason there is a large proportion of these patients even among teenagers and young adults and, I've heard, patients 10 years of age.
Much can be done to see if one can prevent kidney failure and blood vessel complications of diabetes through diabetic education programs among native peoples in the north. This may cost money, but if one prevents some of these patients from going on to kidney failure, money will be saved. In fact one patient not going on to dialysis may save you $60,000, right?
Once native patients go on to kidney failure, they must leave their reservations with their families and move to urban areas of Thunder Bay, Winnipeg, Saskatoon and other places, of course, with all the social disruption and social illnesses that are attendant upon much of our native population.
Perhaps it would be better if we established a medical clinic in the reservation and sent nurses into the community to perform thrice-weekly dialysis or train a person in the reservation and supervise them over the phone and frequent visits, perhaps once a week or once in two weeks, or a combination, rather than bringing them in to the inner city, because of the social problems. I know there are social problems in the reservation, but I think there could be more in the city for the natives.
This possibility does lead to increased costs but it may also avoid some of the costs of social disruptions when families must be brought into urban centres where they can require public assistance which can lead to strain on the public purse. Thank you.
Mrs Sullivan: I'm interested in the recommendation that you make with respect to reprocessing or reusing the dialysers. I've been at St Joseph's Hospital in London where in fact there has been the introduction of some of the reprocessed units and I understand they're working very successfully. I just can't remember offhand how long that's been in place.
Can you advise, why, by example, there are only two units in Ontario that are using the reprocessed dialysers? Is there a capital cost factor involved in the first place that would make people reluctant to do so?
Dr Shimizu: But including the capital cost, these figures --
Mrs Sullivan: We're talking about a life-cycle. What would the net saving be?
Dr Shimizu: When they quote these figures, they incorporate that capital cost.
Mrs Sullivan: So the figure you've quoted of $3,000 a year is the net annual saving, including the capital cost. What you're saying, then, is that the initial capital cost of the reuse is where the hospitals have difficulty in bringing in the equipment, or is that the only reason --
Dr Shimizu: No, but you can purchase it over time.
Mrs Sullivan: Why aren't more hospitals doing it?
Dr Shimizu: Because of some of the adverse publicity that attended manual reuse and reprocessing dialysers. If you use an automated reuse procedure, it's safe. I got a $150,000 grant 10 years ago from the Ontario government to study it. We found that whether you use the new dialysers or reused dialysers, there were no more complications, one way or the other. We were using formaldehyde then, which is far more harmful, but we don't now.
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Mr Jim Wilson: Thank you for your presentation. You've obviously put a lot of thought into how cost savings could be achieved and I thank you for those suggestions.
But I want to just very briefly go back to rationing by age. I've read the reports that you refer to and that others have referred to in this committee. I guess as politicians we're interested to know what the extent of rationing is. I'm gathering that's pretty hard to figure out in this province, because a lot of it is anecdotal.
Dr Shimizu: That's true. Some people just don't refer because they know the climate. For instance, our hospital did a review of our dialysis program, because the medical staff, that is, the non-kidney physicians in the hospital, wanted a review, because they thought we were accepting too many diabetics, too many elderly and so forth, who will not be useful to society. I've done reviews in Kitchener-Waterloo on the same issue.
We are pressured. When the administrators tell you, "When we put money into your program, we have to take it out of the OR time," that kind of thing -- don't forget they're working on a global budget and you're competing for those scarce dollars. People are fighting each other, that is, the physicians who are not kidney doctors don't like you if you admit an 85-year-old woman who they feel is not that healthy.
Mr Jim Wilson: Your answer's very useful, because of course for the last 20 years, politicians have run around saying, "We don't have user fees; we don't have rationing; we don't have two-tiered medicine." I call them the three mythologies of health care. It's refreshing to have physicians talk about what you do on a daily basis, which is, to some degree you have to ration services. That's part of getting your licence as a physician.
Dr Shimizu: In the United States there are 661 patients per million population. Canada has about 520 per million population and Japan has 877 patients. What I'm trying to say is that in the United States, with the free market working that it is, as Dr Kjellstrand says, the facilities chase for the kidney patients. They're looking for patients, and if they're looking for patients, obviously they're going to attract them, and you're going to get the right number that actually should be on it. In a system where everybody's trying to constrain, constrain, you subconsciously will maybe reject -- read ration -- subconsciously. It's got to be that. And we as responsible doctors try to do the best for our hospital.
Ms Jenny Carter (Peterborough): Thank you very much for a very constructive presentation. Particularly your money-saving ideas seem very practical. But I wanted to follow up the question of aboriginal people. It's become very clear that they do have a higher-than-average incidence of diabetes, and you talk about education to help reduce that.
Dr Shimizu: Well, a program to perhaps, by spending money on education -- because, you know, there are some studies in the insulin-dependent diabetic now. Not the non-insulin. The British are doing a study on non-insulin-dependent diabetics and the results are not yet out, I don't think. That may suggest strategies that one can employ in the management of patients with diabetes that prevent development of end-stage renal failure.
Ms Carter: That's what I'm wondering.
Dr Shimizu: That's what I mean by education.
Ms Carter: I suspect that in their original way of life, they would not have had this incidence of diabetes --
Dr Shimizu: No, they wouldn't.
Ms Carter: -- and that it's a maladjustment to the kind of lifestyles they're now living. I'm just wondering how much research is being done into how their lifestyles would need to be readjusted, as it were, to prevent that diabetes from happening in the first place.
Dr Shimizu: This is my personal interpretation and it may be biased. My feeling is that because the natives have been ignored in many areas of our life, I think they have been ignored in this area as well. Attention has not been paid. People discriminate, if I may say so.
Ms Carter: I think they were adjusted to a kind of lifestyle where they maybe ate large meals less frequently and their metabolism slowed down during the winter and they wouldn't have had a large intake of sugar, as they probably do now to a greater extent. Is there any kind of research being done into exactly what is wrong and how they could compensate for that?
Dr Shimizu: There are some thoughts, but I'm not an expert in the diabetic area, so I cannot very well comment. I just want to point out that I think a considerable number of things can be done in studying these people and more funds should be spent in trying to get the natives to follow diabetic diets and diabetic management protocols. I think education is important.
The Vice-Chair: Thank you, Dr Shimizu, for your presentation. The committee will adjourn until tomorrow at 3:30.
The committee adjourned at 1816.