DRAFT REPORT DIALYSIS TREATMENT SERVICES
CONTENTS
Tuesday 3 May 1994
Subcommittee report
Draft report: Dialysis treatment services
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:
Sullivan, Barbara (Halton Centre L) for Mr McGuinty
Waters, Daniel (Muskoka-Georgian Bay/Muskoka-Baie-Georgienne ND) for Mr Martin
Wessenger, Paul (Simcoe Centre ND) for Mr Owens
Also taking part / Autres participants et participantes:
Wessenger, Paul, parliamentary assistant to Minister of Health
Clerk / Greffier: Arnott, Doug
Staff / Personnel: Gardner, Dr Bob, assistant director, Legislative Research Service
The committee met at 1541 in room 151.
SUBCOMMITTEE REPORT
The Chair (Mr Charles Beer): I draw the committee's attention to the report of the subcommittee on committee business, which you have before you. I'll read that into the record, and then there are a couple of changes which I'll explain, and if we get agreement on it, we can then proceed to deal with the dialysis report.
"Your subcommittee met on Monday 2 May 1994 to consider the method of proceeding on a matter designated pursuant to standing order 125 (children `at risk') and other business referred to the committee, and has agreed to recommend:
"(1) That the committee schedule its meetings on the matter of children `at risk' on the following dates: (public hearings) May 16, 17, 30, 31; (report writing) June 6, 7.
"(2) That the committee schedule its meeting on Bill 18, An Act to permit patients receiving Chronic Care to install their own Television or combined Television and Video-Cassette Recorder (Mr David Ramsay) on the following date: (public hearings and clause-by-clause consideration) May 10; and further, that the names of any witnesses to be invited to appear before the committee be determined by the subcommittee on committee business.
"(3) That the committee schedule its meetings on Bill 85, An Act to prevent unjust enrichment through the Proceeds of Crime (Mr Cam Jackson), on the following dates: (public hearings) June 13, 14, 20, 21; (clause-by-clause consideration) June 21; and further, that the names of any witnesses to be invited to appear before the committee be determined by the subcommittee on committee business.
"(4) That all other organizational matters relating to the above recommendations be determined by the subcommittee on committee business."
I would like to note three changes. First, the report-writing would be June 7; not 6 and 7, but June 7 only. And with respect to number 2, Bill 18, May 10 is now not possible for Mr Ramsay, so we would do that on Monday, June 6, if you could make that amendment.
Then there's a further recommendation, which I have discussed with Mr Wessenger, Mrs O'Neill and Mr Jackson. Next week, the Premier's Council on health is going to be presenting its report on children and youth to the Legislature, so we have discussed having them come to the committee, because we're not going to be sitting. We thought it would be very useful for them to make a presentation and for members of the committee to discuss the report with them.
The motion would read: "That the committee meet pursuant to standing order 108 to hear testimony from the Premier's Council on health on Monday, May 9, or Tuesday, May 10, depending on availability." I think it's going to be the Monday, but there's some question that it might be Tuesday, and that's why I've worded it that way.
If that report is acceptable with those amendments, I move the adoption of the subcommittee report. Is there any discussion?
Mrs Yvonne O'Neill (Ottawa-Rideau): Can we presume that we will have copies of the report presented to us at that time?
The Chair: Yes. In fact, we may have it at noon or 1 o'clock; I forget when it's being released. But we would certainly have copies when the committee is here.
Mr Jim Wilson (Simcoe West): Do we know at this point whether the minister will be making a statement in the House with respect to that report?
The Chair: My understanding is that it's the Premier's Council and the Premier would be presenting the report, and there will be an opportunity at that time for each of the opposition parties to respond. The council, I believe, is then going to have a press conference, and then at 3:30 or shortly thereafter we would start here.
All in favour? Thank you. The report is adopted.
DRAFT REPORT DIALYSIS TREATMENT SERVICES
The Chair: We now move to the Dialysis Treatment in Ontario report. Just to make sure everybody's singing from the same hymnal, this is the one dated May 3, 1994. I remind members that because this is a draft, it is still a confidential document of the committee. Once it is approved, with or without amendments, it then becomes the report we table in the Legislature.
Before we get into the discussion of that report, I'll ask Bob Gardner, are there any points you want to make about the report as we have it now in front of us?
Dr Bob Gardner: The version of May 3 incorporates a number of changes that individual members have suggested over the last subcommittee meetings or have called me directly about. It also incorporates our copy-editing, quite a number of minor style and typo type of changes.
The only thing I would draw members' attention to is on page 35 of the latest version, a change in one of the proposed recommendations, number 6, about halfway down the page, the second-last line: "commitments to funding dialysis and related treatment in the current fiscal year." We had "next fiscal year" in our discussions, but we do mean this year. It's a minor change, but because it's in a recommendation I do draw it to your attention.
All the other changes were of a clarifying and organizational nature.
The Chair: We've had an opportunity to discuss some elements of this, so perhaps the most useful way to proceed would be to ask the parliamentary assistant and the two critics in particular if they would like to comment, on the report or any other related element. We have two hours and 17 minutes to deal with this, but I don't think we need to use all that time if members are short, sharp, succinct, witty and pithy, all at the same time. That being said, perhaps the parliamentary assistant would like to be all of those things.
Mr Paul Wessenger (Simcoe Centre): You want me to lead off? I would have preferred to be the last speaker on this subject.
The Chair: I thought you would set the example.
Mr Wessenger: First of all, I'd like to compliment the researcher for the drafting of the report. I think he has captured the evidence that was presented here and has given a comprehensive report of that evidence and the many suggestions that were made with respect to the whole question of the treatment of chronic kidney failure disease. I'd like to make that as the first point.
The second point I'd like to make is the fact that all of us are probably in support of this report, which is something to be commended. I guess the evidence was such that it encouraged us all to the same conclusions with respect to the situation of dialysis treatment in Ontario. I'm going to highlight some of the elements of the report that I think are particularly relevant.
First of all, I think we have to recognize that the services for dialysis in the province are stressed. Notwithstanding the fact that the government has in the last few years expanded the facilities at a rate greater than the increased use, that has still not dealt with the problem of relieving the situation of the stress. We all recognize that the facilities are basically at capacity in the province and that there's a need to provide further services in this regard within the whole continuum of care.
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Second, the other element of the report that I think is very important is the recognition that we should be looking at more community-based services as the way of, first of all, meeting the need of those consumers of the service, and also as a means of providing more cost-effectiveness and dealing with some of the difficulties consumers have in accessing the service. We have to recognize that there are problems with respect to distance of travel, with respect to inconsistencies in the delivery of community care. A number of problems have been presented and are dealt with in the text of the report as well as in the recommendations.
The third point I'd like to make about the report is that it does recognize that we have to look at cost-effective solutions. We've been given a number of suggestions and recommendations which I think will need to be studied with respect to more cost-effective ways of delivering the services. Some of these methods perhaps include the greater development of self-help satellites, of partially assisted centres, of providing the centres outside hospital settings, of providing home dialysis, and having a good mix and availability of the two types, both haemodialysis and peritoneal dialysis.
We also have to be aware that with the change in technologies that occurs in this field as well as all other medical fields, we have to develop a system that can take advantage of the changing technology to more effectively deliver service to the consumer according to the consumer's choice and with respect to cost considerations.
The fourth point is maybe the most important, the fact that there needs to be a comprehensive and continuing planning process with respect to the treatment of chronic kidney failure. This has to go beyond the aspect of providing dialysis treatment; it has to deal with the whole question of transplants as the preferred alternative, where that's a feasible medical alternative, and also look into the whole question of prevention.
It was clearly outlined by one of the witnesses that in perhaps 10 years we would see a decline in this disease as a result of the measures we could take on a preventive basis. Certainly that is the best solution to the situation, and if we look at the whole question of treatment and control of diabetes and treatment and control of high blood pressure, which are two of the major causes of kidney failure, we can see the opportunities for reducing the element of the disease in the community.
With that, I'll conclude. I'd like to compliment the members of the committee. I think we've worked well together in coming up with a report that will provide, hopefully, some original ideas and some good support for developing the long-term plan for the treatment of this disease.
Ms Jenny Carter (Peterborough): I think this is a very satisfactory report. It does seem to reflect the discussions we had and the information we received.
In my own riding of Peterborough, I have heard from several people who have problems with dialysis. It's very true that different people have different problems, so you can't just say, "There's a shortage in Peterborough and we should do this one thing, and that will solve all the problems." You have to have a range of answers in every area in order to meet the needs of the patients there. That need for flexibility and community-based solutions has been brought out in the report, so I'm pleased about that.
Of course a problem is going to be the expense of expansion, but I think we have looked at different ways of reducing the cost while at the same time expanding the service. It seems that sometimes a service that is more appropriate to a patient than, for example, being in a hospital and having haemodialysis can also be more cost-effective. We've mentioned the possibility of reusing equipment, bulk-buying it and so on. Hopefully, the overall cost of doing what we're asking will not be beyond the realm of what the ministry can afford.
I think the report is pretty good as it stands.
Mr Larry O'Connor (Durham-York): I appreciate the opportunity to comment briefly on this report. Before we even got this report, we had some debate in the Legislature that brought about the need for this committee to sit. I thank Mr Wilson for actually bringing this forward as a section 125 so we could have this debate.
As we've gone through this debate, many of we committee members have had a chance to see and hear from a lot of people, for example MORE, the organization that is promoting organ transplants and availability. Recommendation 13 says that "the Ministry of Health explore means of increasing the numbers of kidney donations." When we talk about kidney transplants and the cost of dialysis, the cost of a donation and transplant is about the same as for a year's dialysis. Of course, the freedom then offered to that consumer who has that as a choice is a very meaningful way of improving someone's life circumstance.
Just as we were finishing these hearings, in fact, the son of a friend of my wife's, with whom she does a little bit of folk art, was going around with a beeper, on the waiting list for a kidney transplant. The unfortunate reality is that her son, who was 29 years old, expired on the table during the operation. Any time anyone goes through a medical procedure like a transplant, we can think of all the success stories out there, but there are still those who don't make it. We need to pause and think about that. When we reflect on the reality of the report and the whole issue, it goes beyond just some paper. It goes right down to touch people's lives. For this family from Oakwood who lost their son, it does have a different meaning and a different reality. I just wanted to share that moment with my colleagues here, because that's a reality that some people do have to face.
As the Central East Regional Dialysis Committee embarks on its work and as the working group on renal services gets together, I know they'll take a look at the work that's been compiled by this committee. I'm sure it will be a valuable tool for them, because we've had an opportunity to pull together some key people as we develop this report. I think they'll take a look at this and appreciate the effort we have made to this point.
I just want to congratulate and compliment Mr Gardner on his work in pulling together this report. It pulls together some of the recommendations that we all had shared, and I think the report itself has been pulled together for members of this Legislature in just about as non-partisan a way as possible, which doesn't happen too often but in the committee process it does happen a little bit more often. I appreciate my opposition members and critics for Health for the sound advice they're sharing with us and look forward to seeing some of the implementation take place.
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Mr Ron Eddy (Brant-Haldimand): I appreciate the report and compliment the writer, of course, and am particularly pleased with the recommendations that are set out in the report: very, very important. I notice number 7 in particular, "The ministry...act immediately to expand treatment services to ensure adequate and equitable access to dialysis treatment," so very important. I have great hopes for the transplant system and that donations will increase. I hope we have a campaign to bring that to everyone's attention.
But the "adequate and equitable access" is so important in the rural areas where there are great distances to travel to a dialysis treatment centre, realizing that in rural areas it means someone stopping in very busy seasons to transport someone else for needed dialysis treatment. It's so very important to have it community-based and as close as possible. I'm particularly interested in the home self-treatment. I think we really must concentrate on that. I appreciate those recommendations.
The Chair: I wonder, with committee members' indulgence, recognizing that this hearing is being televised, if perhaps I might, for those watching, read the proposed recommendations.
Mr O'Connor: I think we support that, Mr Chair.
The Chair: The summary of recommendations then:
"To summarize, the committee has recommended that:
"(1) The Ministry of Health respond to the standing committee on social development within 30 days on how it will ensure that adequate coordination takes place between the Central East Regional Dialysis Committee and the working group on renal services.
"(2) The government take into account the resources and capacities of district health councils to conduct complex strategic planning before assigning new projects to them.
"(3) The Ministry of Health explore other planning models for particularly urgent and complex issues.
"(4) The Ministry of Health develop mechanisms for disease-specific and needs-based planning. The officials and branches responsible for this planning must be clearly identified to legislators and the public.
"(5) The Ministry of Health, in consultation with the Kidney Foundation, specialists and other stakeholders, develop a kidney patient registry in Ontario.
"(6) The Ministry of Health report to the committee within 30 days on its commitments to funding dialysis and related treatment in the current fiscal year.
"(7) The Ministry of Health act immediately to expand treatment services to ensure adequate and equitable access to dialysis treatment.
"(8) In its immediate expansion of dialysis treatment, the Ministry of Health should prioritize community-based delivery and innovative projects.
"(9) Recognizing that dialysis is a medically required service as defined under the Canada Health Act, the Ministry of Health must ensure that home haemodialysis patients have equitable access to nursing and other services without user fees.
"(10) The Ministry of Health must ensure that it has committed sufficient resources to be able to respond quickly and comprehensively to the reports of the Central East Regional Dialysis Committee and the working group on renal services.
"(11) The Ministry of Health fund and encourage a broad spectrum of community-based facilities and services, from satellite centres, clinics under the Independent Health Facilities Act, to home care. It will need to ensure that funding mechanisms are sufficiently flexible to encourage innovative community-based approaches.
"(12) The Ministry of Health explore innovative means of providing dialysis and related care in the most cost-effective, environmentally responsible and efficient way.
"(13) The Ministry of Health explore means of increasing the numbers of kidney donations.
"(14) The Ministry of Health integrate long-term policies to prevent chronic kidney disease into its overall health promotion goals and practices.
"Finally, we think a comprehensive and integrated approach is needed to solve the current problems of access to kidney treatment and to develop equitable and effective long-term solutions. Our recommendations have called for many specific changes, for systematic and continuous strategic planning, and for the development of a full continuum of treatment services for those with kidney disease. We think these recommendations should be seen as an integrated and comprehensive package. We hope that the ministry will respond in an equally comprehensive fashion. Our last recommendation is that:
"(15) Under standing order 37(d), the standing committee on social development is calling on the Minister of Health to respond to this report in a comprehensive fashion within 120 days."
We will have to move a motion to that effect at the end of our discussion but that just provides the recommendations so people will have a sense both of what we have been talking about and what we are talking about.
Mrs O'Neill: I'm glad you read the recommendations, Mr Chairman. I do think it's very important that we emphasize that we do expect a response from the minister, on some of these things sooner and some of them within a three-month time frame.
I was struck in the presentations mostly by those who use the service and the kinds of limitations that are made on the rest of their lives because they happen to have chronic kidney failure.
I was also struck by the fact that a professional in a centre often can change lives just with their drive, with their knowledge, with their ability to use resources effectively, and I think we saw that. There were times when the professionals who work in this field came before us and really were asking us to catch up to them. I think it was very important that we have those good role models.
I think the call for more research in this area is just mandatory for us as legislators to consider. I also think it is important that we realize that many people who are dealing with this who happen to be professionals are in more isolated areas. We certainly had excellent representation from the north. I think we were trying to help physicians, who often are the first contact or touchstone that people come to with their illness; that in those situations where there is a distance problem, physicians could be educated even through teleconferencing, that there could be consensus conferences. I think we should really encourage that kind of networking.
There was an emphasis on prevention by many presenters, particularly by the professionals and I think we all feel that. That's why we have to spend money in public education on health issues. I don't think we can ever forget, however, that some people know almost from the day they're born that they're going to have this kind of illness hanging over their heads. There is quite a history of congenital passage of this disease.
All of that said, I think prevention should be an area that we put quite a few funds into.
I am still feeling incomplete about the organ transplant work. I think the report reflects as much as it could of what we heard, but I think we all presume that it goes on much more than it does and that it's much simpler than it is. If anything, I was struck by the complexities of that and really the sensitivity of the people who deal with that, that there are ways of getting a very informed consent, and sometimes a very consoling consent presented.
We as legislators have to keep an eye on the presumed-consent legislation that will now be studied by people in this area, because I really do think that most of us, as do many of the patients, feel that organ transplant is certainly one of the first and ideal choices for most patients.
Those are my thoughts. I'm very happy with the report. I feel that it sometimes is very helpful for a group such as ourselves to sit down and focus for a number of days on an issue that is of great concern to many people in Ontario.
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Mr Jim Wilson: I want to begin my remarks by thanking the committee members from all parties for taking the time and having the patience that was shown, and the understanding, in dealing with the resolution I put forward.
As members know, this resolution stems from many months -- in fact, well over a year -- of work on my behalf and that of my staff and other people in trying to come to grips with the dialysis crisis in the province.
I think it's somewhat unfortunate that it has taken an opposition member using every legislative tool that I can think of. There have been hundreds of petitions from the Simcoe county and New Tecumseth and Collingwood areas presented in the Legislature that have been signed by the good people of those area and that I've presented in the Legislature.
On December 9, the Legislature debated a private member's resolution standing in my name to once again try and convince the government that a community-based solution, a commonsense solution, is needed to the dialysis crisis, and of course there is this resolution before this committee.
While all of that sounds a little too -- too many I's perhaps in those sentences and a little bit self-centred. I was struck at the very beginning when dialysis patients in my riding came to see me. In fact, they were too sick to come to see me. I went originally to Mr Alvin Hiltz's house in Collingwood and walked into his living room and saw a person -- sorry. Mr Alvin Hiltz is in Alliston. Mr Robert Udall in Collingwood was the first patient I visited. I walked into the man's living room and couldn't believe that in the 1990s there would be someone who didn't look very well and didn't look like he would probably survive the next couple of trips to Toronto that would have to endure to receive what is both a life-sustaining and medically necessary treatment such as dialysis.
I was struck that when we debated this thing on December 9 in the House, other members didn't have similar stories. I think the benefit of the hearings we've had is that a number of individuals came and all members have now brought forward stories from their ridings of people who are suffering with end-stage renal disease and require dialysis treatment.
It's a quality-of-life issue, and I think if we've learned anything during this process and the hearings, it's that while the government claims that everybody who needs dialysis treatment is getting some form of treatment, there's more to the issue than that. It's a quality-of-life issue when you have someone like Mr Alvin Hiltz, who spends 12 hours three times a week going to and from Toronto and in Toronto receiving haemodialysis -- to hear his story and to have had the unusual and heart-wrenching experience of having Mr Hiltz appear at a public meeting in Alliston to tell us that he wasn't going to go to Toronto any more for his treatments and essentially telling a public meeting of over 200 people that he was giving up and committing a form of suicide.
Perhaps I could share with members that these hearings have helped lift, I think, the spirits of dialysis patients, Certainly, the individuals in my riding feel better; their morale is up. But we've also raised expectations. The reason I'm grateful for this report and appreciate the time lines that are in it is that I think it will -- I hope it will -- spur the government into action.
I found it very frustrating, and I think one of the most disturbing presentations was made by the chair of the Central East Regional Dialysis Committee. I found it a very apologetic type of presentation. In fact, Ms Linton seemed to be appearing before this committee to give us heck for investigating this matter, rather than explaining to this committee why it would take so long for district health councils to get this central east dialysis study under way.
I wanted to say that for the record, because I was very polite to Ms Linton, the chair of that central east study, when she was here, but I haven't been able to rest with my conscience since then because I really felt there were some more things that could have been done by district health councils to get the study, which was launched for the umpteenth time last year and was supposed to be finished by now, moving.
The recommendations in this report and the committee's report call upon the government to not necessarily wait for the end of the central east study, but to start putting actions forward now that would address the immediate crisis we have in the province.
I was struck too by the fact that the question of user fees came up in an indirect way at these hearings, and also rationing. It strikes me that politicians for far too long had denied the existence of user fees in our health care system. We've had politicians for years running around saying that we don't have rationing and that we don't have two-tier medicine. I call them the three mythologies of health care.
We do have user fees for someone like Mrs Anne Archibald, whose daughter Jackie Archibald appeared before this committee on behalf of the Archibald family. She told us about the struggle her mother had in being hospitalized in Toronto, and that the only way to get out of the hospital was to convince the hospital to send her home with a dialysis machine, only to find out after the fact that the Archibald family in Beeton would have to come up with $350 to $400 a week to pay for the nurse.
I note that one of the recommendations of this committee deals with that in a very specific way. It calls upon the government to provide funding for medically necessary service and to recognize the whole spectrum of dialysis services as medically necessary services under the Canada Health Act, and therefore there should be no user fees. Certainly, John Archibald, Anne's husband, has told me many times that it is a lie to say there are no user fees currently in our health care system, because he's experiencing it to the tune of $350 to $400 a week on a very personal basis.
A couple of the things with rationing: I don't think we really were able to conclusively determine that rationing existed. The evidence presented to the committee was that in the United States, for a similar population, there were more dialysis patients or more people receiving some form of dialysis treatment and that therefore, with fewer dialysis patients recognized in Ontario, there must be some people out there who have a degree of kidney failure and are not being referred for dialysis services.
That's something on which I'm inconclusive in my own mind, as to the extent of rationing that might be going on. I hope it isn't going on. There was some anecdotal evidence presented to the committee, but I think the expectation is there on behalf of citizens that our health care system is there when you need it and that rationing should not be part of the system, although I will tell members, as they know, that physicians and health care workers have always practised some form of rationing. There aren't unlimited services. We know that when it comes to cancer and other types of services that are required, we have waiting lists in this province.
I think it's a question overall of setting priorities in the health care system and setting priorities for government. Today, members will know that Mike Harris, leader of the Ontario PC Party, launched our campaign to save medicare. It's contained in the document we released today called the Common Sense Revolution. We outline that health care is the number one priority of a Mike Harris government and we challenge other governments-in-waiting or the current government to make health care a priority.
While we identify a number of non-priority areas in government that we think should be cut and need to be cut if we're to get our deficit under control and if we're to bring down taxes in the province, health care will be wholly preserved and it will be fully funded, should we form the next government.
I'll tell you, the work of this committee and the work surrounding dialysis that I have done and others have done in my party helped to convince my caucus colleagues that health care is in trouble in this province and that it must be protected at all costs. That won't mean that within the envelope of funding that's provided for the Ministry of Health we won't be continuing to look for savings and to deliver those services in the most efficient way possible.
I put that challenge out to other parties. It's nice to complain about things but it's another thing to list what your priorities are and what your non-priorities are and be prepared to take those hits from interest groups that disagree with perhaps your priority-setting and your non-priority-setting.
Just specifically to the recommendations, I wanted to perhaps point out that we may want to clarify recommendation number 3, that the Ministry of Health explore other planning models for particularly urgent and complex issues. My idea of a good report -- and I do want to thank Dr Bob Gardner and the legislative research people for putting together an excellent report. However, recommendation 3, perhaps we could just explain what we mean by "other planning models." Even in the context where the recommendation is contained in the report -- I'm reading from the summary right now, it's not quite clear what we mean by that and perhaps we could just sharpen that point a bit, if there were more specific thoughts that members had on recommendation 3.
Also, recommendation 13, that the Ministry of Health explore means of increasing the numbers of kidney donations, I was wondering -- perhaps other members may want to respond to this suggestion -- since in a number of other areas we've asked the government within 30 days or 120 days to get back to this committee about its specific plans and actions, could we not in recommendation 13 also ask the government to come back and present a plan of action to this committee on how the government is to proceed to increase the number of kidney donations? I think that I'd be prepared to entertain a longer time frame than 30 days, but that it's incumbent upon the government to not leave that issue as a non-priority item but to come back to us on a priority basis and to let committee members know how the government plans to increase the number of kidney donations.
I also want to thank members of the kidney foundation who appeared before the committee and have been monitoring the committee hearings. Their input has been invaluable and I hope that the recommendation that calls upon the government to ensure that there's coordination between the central-east regional dialysis study and the working group on renal services by the kidney foundation -- that we have helped in some way to make sure the coordination takes place between those two studies.
My preference, to state for the record because we've stated it in camera on several occasions, would have been that the government not have asked the district health councils to do the central-east regional study but instead the government should have first and foremost looked to the ongoing work of the working group on renal services under the auspices of the kidney foundation, that we should have looked there first before setting up a new mechanism of study, that we should have taken and encouraged and supported the work of the kidney foundation, taken its ideas, and then presented a more concise mandate to the district health councils to implement the recommendations of the working group on a regional basis.
It strikes me that what the government did on a couple of occasions was announce that the central-east district health councils would get together and create a study. They left those district health councils in limbo for several months and didn't indicate what the terms of reference would be for that study. It's my understanding, and we had testimony here, that one of the major problems and one of the reasons the study's taking so long is and was that they couldn't come up with the terms of reference and couldn't get all the politically correct members together to do the study.
My preference would have been giving the district health councils a mandate to implement specific recommendations, rather than the way the government went about it.
I'll just conclude by once again thanking people for their participation. I am sincere about thanking all members. It's not that often that we agree on recommendations. The government itself in this case needs to be thanked in terms of the time frames that it has agreed to in the recommendations. I hope the government won't miss those time lines and that this committee has the authority to somehow pressure the government, should it miss a time line, to respond to the recommendations.
Finally, I want to thank my own constituents, Mrs Colleen Roth, who appeared on behalf of Mr Alvin Hiltz; Jackie Archibald, whom I mentioned earlier; and Mrs Isabelle Bates, who appeared on behalf of the south Simcoe chapter, Kidney Foundation. They've done a lot of work in the local area.
There's a great deal of community interest and community support, and my communities of Collingwood, Alliston and New Tecumseth are quite willing and ready and able to raise the capital dollars. In fact, I've run out of things to say to local service clubs that want to raise the capital dollars to set up a dialysis satellite. It's one of the questions that didn't get answered that I still face when I'm at home, "Why do we still have three machines in Alliston serving only three people, when there are several other dialysis patients in the area who could use those machines and share them?" It's a question that this committee hasn't answered. I think I learned that there's a more complex answer and that the answer isn't all that simple.
We'll be looking to the studies that are under way to come up with the most cost-effective way of providing dialysis services, hopefully on a community-based model. I have the same situation in Collingwood, where there are three machines in the area serving only three patients and the rest of them have to drive to either Toronto or Orillia. It's unfair. As I've said, it's a quality-of-life issue. I hope the government gets back to us in a very timely fashion with some specific actions that it's willing to take.
I want to thank you, Mr Chairman, for composing and sending the letter on behalf of the committee which asks the Minister of Health, Ruth Grier, to review and respond to this committee with respect to the individual concerns, like Mr Hiltz, like Mrs Archibald and other dialysis patients who came forward. I'll be looking forward to the Ministry of Health's response with respect to those individual cases. I think that should be the top priority. I think the ministry should do that in a number of days, not months, because people are hurting out there and it's difficult to believe in this day and age that government has failed to provide the type of quality-of-life services that people expect and indeed deserve under medicare.
The Chair: Just before turning to Ms Sullivan for her final comments, members of the committee, I will be coming back to the letter you have in front of you just so we can approve that, and there are a couple of recommendations regarding the disposal of the report that I'll have to put before the committee. We'll do that upon completion of Ms Sullivan's comments.
Mrs Barbara Sullivan (Halton Centre): As I start my comments to the committee with respect to the report that's been drafted, I want to first of all indicate that I was very pleased to see Mr Wilson's initiative in bringing this matter forward. The question has been one that has been on the table for several years and it was difficult to know whether there was a crisis at the current time that was limited to one area of the province or that was more broadly based across the province. Certainly, we knew, and it's been very clear for a long time, that the lack of future planning was a serious gap in the system and led to some of the very precise scenarios that we saw. So for that, I do want to say that I think Jim Wilson has served the members of this committee and his constituents well, and I hope that the results of this report will move the issue along in terms of the attention paid to it by the Minister of Health.
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The second thing is, I know that the other members who have spoken have indicated their gratitude to witnesses who appeared before the committee. Both patients, people who are in actual treatment, and those who are involved in support services for patients and their families provided us with the benefits of their education, of their expertise and of their experience. Their participation, when in fact there is no major resolution to this issue by this committee other than recommendations going forward, I think was very useful to us and, frankly, will assist us in ensuring that there is action.
Our caucus has discussed the issues, the summary of recommendations, which have been so ably put forward by the legislative research, Dr Gardner, and we also want to congratulate Dr Bob for, in what is a very clear way, making the recommendations that came from each of us in the discussion that was on the table sound not only reasonable but articulate. I think there's no question that all of us who participated in this discussion concur with the recommendations that are included.
You will recall that as we were coming to some discussion with respect to the recommendations I was a little more adamant on some points than some of the other members were, and the recommendations therefore reflect a consensus rather than some of the stronger positions that I would have liked to have put in some areas.
As a consequence, members of our caucus who participated in the hearings with respect to dialysis treatment in Ontario and in the drafting of the report, who concur in its findings, also want to submit a minority report which perhaps addresses some of the issues in somewhat stronger language. If I may, I would like to read that minority report to you. It will be attached to the document. It underlines, I think, with some greater urgency the very urgency that the entire committee saw, but where there was consensus on those issues we certainly wanted to underline some of those areas. The minority report is as follows:
"We were shocked to hear the Minister of Health tell the committee that current measures mean `we are actually staying ahead of growth in patient numbers,' a statement that every analysis of current data shows is incorrect. In fact, Ontario is at present staying barely even with the need for new dialysis services, and in some parts of the province has already fallen behind. Whether the minister wants to admit it or not, we have a crisis in the availability of services that must be dealt with on an urgent basis.
"The minister cannot afford to wait for longer-term reports, and must immediately
"(a) set up a `crisis committee' that will specify an interim implementation and action plan to ensure that those who are appropriate candidates for dialysis will have access to dialysis services, and determine funding requirements to meet immediate, short-term crisis needs, and
"(b) commit funding to ensure that those needs are met in the most appropriate manner.
"In the absence of doing so, the minister has no alternative but to establish guidelines and make these known to the medical profession and to the public on the basis on which dialysis will be made available to Ontario citizens, and whether these services will be restricted by age, by geographic area, by multiple symptoms, or other criteria.
"Over the longer term, we are convinced that the minister must establish a permanent central `network' of major stakeholders, including professionals, facilities and consumers, to coordinate a provincial strategy and set standards for the entire spectrum of dialysis and transplantation services, including early diagnosis, treatment, rehabilitation and support services. Second-tier regional networks should implement that plan according to regional needs. Life support funding must be predictable, based on a multi-year approach to ensure stability, and take into account growth in end-stage renal disease; incentives must be provided to ensure the most effective and cost-efficient care, including training, modified forms of self-care, and the appropriate regional delivery of services. Major steps must be taken to encourage an increase in kidney transplantation, including necessary changes in incentives to hospitals, education of the public, and provincial law. Further, the serious fragmentation of divisions of the Ministry of Health in dealing with kidney disease must be addressed on an urgent basis.
"The district health council process is not appropriate for such specialized planning, which extends beyond a regional base, and which requires sophisticated needs-based analysis, disease prevention mechanisms, intense patient involvement and outcomes measurement. We recommend the increased participation of the academic health science centres in coordinating and implementing such a strategy."
As you will see -- and I will pass this minority report around and will make a formal indication that our caucus would like it appended to the main report -- the minority report that we're presenting simply underlines what we see as the urgency and the need for planning.
There are a couple of areas that I want to speak to directly, and one of them is with respect to comments about the fragmentation of divisions of the Ministry of Health in dealing with kidney disease. We have seen on more than one occasion the fragmentation within the Ministry of Health whereby one division is responsible for drugs, another division is responsible for institutional care, another division is responsible for health promotion and so on, and never the twain link. I think it was quite clear in the last round of drug benefit plan delistings of products, when some of the nutritional products were delisted from the ODB formulary, that there was a severe and immediate impact on kidney patients who require, by example, calcium carbonate to assist them in their treatment program. Furthermore, the threat of the delisting, while it's very difficult to measure how serious the threat was, of some other drugs used to ensure that a transplant is effective certainly created enormous concern among patients, among providers and among support organizations whose time and efforts had to be spent in battling what was a threat of the removal from the ODB of an absolutely vital medication, a medication that was itself lifesaving.
In speaking specifically to the issue of fragmentation, I think we're underlining the coordinated network approach that has to be taken, where the Ministry of Health has to come to the table with an integrated stance, understanding the full life cycle of the disease and the continuum of care associated with that disease. Professionals, whether they are delivering services in the home or in institutions, also must be a part of that network. In the facilities themselves, whether they're independent health facilities, hospitals or other centres -- satellite centres, by example -- patients themselves must be involved in the dialogue. That's why we are underlining a specific network.
Our minority report is an addendum, as we see it, to the main report. We would like it attached. We understand, if there cannot be consensus of all the parties to some of the stronger language and more direct discussion. We want to underline that we also concur and support the recommendations that have been put forward by the entire committee.
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The Chair: There are several other members who wish to comment. Just to be clear, under subsection 130(c) there may be a minority report, but am I correct, Mrs Sullivan, that you're saying that if members agree with what you have added here, it would be agreeable to you to have that included as part of the report, if that were acceptable to all members? And if it is not, it's not a question of the committee agreeing or not: Any member may add a dissenting opinion.
Mrs Sullivan: I would certainly be appreciative if all members of the committee could support the minority report. If they can't, and my suspicion is that they will not be able to because of positions that were placed earlier in our discussions, we would still like to append it to ensure that there is an additional underlining of what we see as the urgency of next steps that must be taken.
Mr Wessenger: First of all, with respect to the minority appended report, the first concept I would take issue with is the whole question of the role of the DHC in the planning process. The district health councils are the vehicle, in my opinion, for determining the appropriate community needs and the appropriate community response to those needs, and I suggest that the recommendations put forward by the minority report would go contrary to that concept. We already have a vehicle established for planning on a community basis, which is the district health councils, and I would not want to see any weakening of that model.
With respect to the other recommendations, I would suggest that the statement that we're staying ahead of growth in patient numbers isn't an accurate statement for the period to which it relates, but I have indicated quite clearly on the record that we are in a situation of stressed facilities, we do face an increased growth in the future, and we have to deal with that situation. I think the report puts forward a strong position with respect to dealing with that issue.
In respect to Mr Wilson's comments concerning some of the recommendations, I would suggest that this committee's trying to determine which other appropriate planning models would at this stage not be very productive without a great deal of discussion and examination of what prospective planning models we could even look at to try to determine what might be the most appropriate. I would suggest it would not be productive in the time frame we're dealing with.
With respect to the question of exploring the means of increasing the numbers of kidney donations, there's no question that the ministry has been trying to increase the number of kidney donations. The position they have taken is basically the position put forward by Dr Stiller: to look at the institutional barriers with respect to the question of transplants and try to break down those institutional barriers. I know that's the position MORE has taken with respect to trying to encourage transplants, to try to deal with those barriers that exist within the institutions. The evidence given is that that is probably the aspect that discourages most the whole question of increased donors, that those barriers exist within our institutions.
That certainly is something that would bear fruit, looking at ways of how they're dealing with those institutional barriers. I know they're being looked at, I know they're trying to address that problem, and it will be interesting when we get the response within 120 days. I'm sure the ministry will indicate the ways in which it's trying to break down those institutional barriers.
The other two questions, of presumed consent and mandatory choice, are ones which I think have to be dealt with on a broad consultation basis before any recommendations could be made by any committee. That is something that requires a lot of public input and consultation.
I'd remind Mr Wilson that when he said he wants a response, we will have the suggested recommendation "that the Minister of Health respond to this report in a comprehensive fashion within 120 days." I think that covers his concerns.
Mr O'Connor: Further on some of the conversation we've had since the last time I had the floor, one thing that was pointed out by my friend Mr Wilson is that he doesn't understand why central-east had to set up this committee to take a look at it. Then my friend Mrs Sullivan suggested that there be a crisis committee set up. I'm reluctant to say we should be setting up one more committee, and I think that's what Mr Wilson said even from the beginning.
But we've heard through the committee hearings and further that the working group on renal services won't be able to report till the fall, with a final report towards the end of the year, and that the work that's going to be done right now by the Central East Regional Dialysis Committee will take a look at those immediate problems, and those are just some of the problems Mr Wilson's pointed out.
I can't see where setting up a crisis committee to take a look at it is warranted. I guess that's where we get into the partisan part of the committee process, that you're not doing enough. But setting up committees? Mr Wilson, whom I'll loosely quote, and he'll correct me later, has said that what we don't need is more committees. I've got a problem with that, and I guess that's why we have this being brought forward as a minority report by the Liberal caucus.
Mr Jim Wilson: I want to begin by saying that I agree with the comments made by Mr Wessenger and Mr O'Connor and thank them for the comments with respect to the Liberal caucus minority report.
While I appreciate that the Liberal members are putting some thought into the issue, I just can't emphasize enough that setting up three more committees is bloody ridiculous and disgraceful. This minority report says one committee is a crisis committee, the second is a network, the third is a second-tier regional network. That's in addition to the two committees we already have. What I take from this report is that the Liberal caucus would like us to go back to our constituents and say, "Yes, we had a successful round of public hearings and recommendations, and we've set up three more committees on top of the two that are already going."
I agree with Mr O'Connor. It's been my consistent thought from the beginning that we should encourage what's already happening, given that it is happening; send resources on an urgent basis to the Kidney Foundation so it can get its work done; encourage the district health councils. Don't allow the chair or anyone else to come back to anyone and, in an apologetic manner, suggest that there are all kinds of reasons why the central east study isn't done. Get it done.
We don't need another three layers of committees. I would seriously ask Mrs Sullivan to reconsider the minority report. While the language of it is wonderful and flowery and sounds very concerned, I think anyone who actually reads through it would be extremely disappointed in the Liberal caucus's response. They've missed the boat. The intent of the December 9 resolution and the intent of these committee hearings was to get solutions. People are tired of committees and they're tired of studies. They want solutions. People are hurting out there and they need solutions right away. It's incumbent upon us to find those solutions or, if we don't have them, to encourage the experts to come up with them.
The recommendations that have been agreed to by all parties aim towards that: asking the experts, as quickly as possible, to come up with the solutions, and calling upon the government to now set aside the financial resources and have the will to implement those solutions just as soon as they come off the press from the two committees that are already going. I think that's been the success of these committee hearings, and I would not want to see a minority report water down what has been accomplished today.
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Mrs Sullivan: I want to speak to some of the comments of the members from the New Democratic and Conservative parties who were commenting on this minority report.
The first issue, with respect to the time lines, is one that has to be addressed, and also the work that's already under way.
The time line situation is thus: The Kidney Foundation report is due in some months. It will be a substantially different kind of report than will be prepared by the central east committee. That committee, as we know, was requested to commence its work last October by the minister. We know the first meeting it held was in April. We do not believe, and I am certainly not convinced, that the recommendations from that committee will be available in a timely way to meet urgent, immediate needs.
As a consequence, the suggestion that a crisis committee be set up now to deal with the needs of the exact scenarios and situations that were brought to our attention has to be done. If it's a matter of an interim strategy, if that's what you prefer to call it, that is what we are calling for, indeed demanding. The situation in many areas, particularly in the central east area -- however, also extending into Hamilton and into Ottawa and two or three other regional areas of the province -- is such that medium- and longer-term solutions simply can't be waited for to solve current needs.
The second issue is with respect to who plans, and that's the question we're trying to address. In our view, the district health council process which Mr Wessenger has alluded to is probably appropriate for questions surrounding primary care issues and other issues which can be specifically addressed and studied and where the analysis can be done at the local level by all participants in the community. There are certain areas of health care, however, which expand beyond those boundaries, which go beyond the regional boundaries. I believe they are the specialty areas, including cancer care, cardiology and kidney, among one or two others. The district health council process was neither devised nor designed to deal with those areas of specialty care which require significantly different inputs in terms of analysis, in terms of treatment delivery and in terms of supportive care, and the issues around those.
In my view, the call for an agency was heard by the committee on more than one occasion. My impression from discussion before the committee was that a formal agency, a formal new body, wasn't what was seen as necessary. However, what was seen as necessary was a permanent mechanism, and I stress the word "permanent," that will on an ongoing basis ensure that longer-term planning, analysis and research is done in a coordinated way.
Our approach is in many ways comparable to the government's own approach in bringing together a network of experts associated with cancer treatment. The regional outflow from that central network activity can certainly ensure that on a regional basis, the local delivery is put into place.
Clearly, there is not concurrence with the approach we have put. We believe it's reasonable, we believe it's appropriate. We believe it also is supportive of the recommendations and moves on from the recommendations included in the committee report and therefore would like it appended as a minority report.
Mr Jim Wilson: I would urge the Liberal caucus to reconsider. I think some of the concerns Mrs Sullivan has brought forward are addressed in the recommendations that have been agreed to by all three parties of this Legislature in this committee.
Recommendation 4, if I may just read it, says that: "The Ministry of Health develop mechanisms for disease-specific and needs-based planning. The officials and branches responsible for this planning must be clearly identified to legislators and the public."
I felt we had reached a very good consensus with respect to the ongoing planning. We have thousands of bureaucrats over there, and surely to goodness they could do a bit of planning. If they can't, we should fire them and get some people who can do some planning. We don't need to set up more committees and tiers.
If there's a problem that the Ministry of Health is unable to plan -- and I agree, the Ministry of Health doesn't seem to be able to plan -- then I suggest we get a new minister and we fire a few people, or rather than firing everyone, I suppose we could bring a few people in on secondment, which is a program my party used to do on a regular basis when we were in government. It was not uncommon to borrow experts from the private sector, from the hospital sector, and to have them come in and run parts of your ministry for a while. That was just a commonsense way of doing things and it also kept the payroll costs down. That's all gone. Maybe we should bring it back. But all three parties agreed on recommendation 4 because we didn't want to see another whole layer and bureaucracy duplicating what the Ministry of Health is supposed to do. If the Liberal caucus wants to come forward and say the Ministry of Health isn't doing what it should be doing, we'll talk about that, but I think we have to give the ministry a chance. We're giving them a recommendation. We're telling them to get their act together here, and we're making sure that they clearly identify that role and responsibility to legislators so that I and other members in the future who want to deal with this issue or other disease-specific crises that pop up in the province will know what bureaucrats and what branches of the ministry are specifically responsible for that planning. I thought recommendation 4 was very positive and I thought it addressed a number of the concerns Mrs Sullivan has raised once again.
Recommendation 5 is that "The Ministry of Health, in consultation with the Kidney Foundation, specialists and other stakeholders, develop a kidney patient registry in Ontario."
To me, that was a very significant recommendation. We heard a fair bit of testimony regarding the need for a patient registry, and I think, Mrs Sullivan, some of your concerns about coordination and other things you mentioned will be addressed through the patient registry, and I look forward to the Ministry of Health's response on that.
I think it's something that will be agreed to by the government -- at least I hope it will -- and will help with that long-term planning so we don't have these surprises of patients appearing from time to time for whom governments claim they weren't prepared. If we have an ongoing registry of patients and if we have that registry from prior to end-stage renal disease and follow the progress or deterioration of patients throughout the stages of disease, we'll be able to plan for and anticipate the needs when a patient does eventually have end-stage renal disease or kidney failure.
I think we've covered those angles, and I don't want to see more committees set up that in any way would detract from what has been a very difficult process to date, that is, to get the government to agree to fast-track what it already has in place, not to create new bureaucracies but to make sure that the people who are currently on the payroll do what they're supposed to be doing for the people of Ontario.
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The Chair: Mr O'Connor wanted to add something briefly. As I say, any member may submit a dissenting opinion, and I think the views have been expressed.
Mr O'Connor: To wrap it up, in the minority report there are some presumptions made that a lot of these areas won't be touched on by the working group. But a lot of what you've raised will be touched upon by the working group and by the Central East Regional Dialysis Committee. I see we're not going to agree on this, and I just pass that on.
The Chair: I think we'll move to adopting the report. As I say, if there is a dissenting opinion, that can be added to it. What I propose to do is I'm going to move the adoption of the report, and I'll just note that that includes recommendation 15, which deals with the question of the response within 120 days.
Does the committee agree to adopt the report on dialysis treatment services, as presented?
All those in favour? Opposed? Carried. The report is adopted.
Having adopted the report, I need the following agreement. Shall I present the committee's report to the House, simultaneously in English and French, and move the adoption of its recommendations? Agreed.
Before you, you have the letter we had agreed I would send on behalf of the committee, if I can read that into the record. Mr Wilson made reference to it in his comments earlier.
"Dear Minister:
"I am writing on behalf of the standing committee on social development with respect to our recent consideration of dialysis treatment services in Ontario.
"In the course of the committee's hearings, a number of concerns were expressed by presenters with respect to the cases of particular individuals and their difficult circumstances in obtaining dialysis treatment. The committee has directed me to request that you review the concerns raised and endeavour to find appropriate responses for those individuals. I enclose for your information the transcripts of the committee's proceedings.
"The committee further directed me to request that you provide directly to the committee within 30 days following the tabling of the committee's report on dialysis treatment services a written status report on your review of the individual cases and remedial measures taken.
"Your review of these concerns and considerate response is appreciated by the committee.
"Yours sincerely,
"Charles Beer,
"Chair,
"Standing committee on social development."
Mr Jim Wilson: I think it's a very good letter, Mr Chairman, and would just ask that the cc's and the names of the committee members to whom this is to be copied be included on the letter.
The Chair: Fine. Is that letter agreeable to all members? Okay, that's agreed, and I will send that out as soon as we can get that typed up. That concludes our hearings on the section 125 regarding dialysis treatment that was brought by Mr Wilson.
Just before we break, Mrs O'Neill, Mr Jackson and Mr Owens have received a draft list of witnesses for the section 125 we are going to begin on May 16, regarding children at risk. I think the subcommittee can deal with those, and we will get letters and phone calls out to the people who are going to be presenting.
I'd also say to members that the Premier's Council has been confirmed for Monday. We would meet here on Monday of next week, the 9th, at 3:30. We would not meet on Tuesday, May 10.
Mr Jim Wilson: Mr Chairman, just in conclusion, I think I would be remiss if I did not thank you on behalf of my caucus colleagues and I for your excellent leadership during these committee hearings. I had the opportunity -- I don't know whether you were listening -- to say what I thought were some complimentary things about you in the House last week in terms of your ability to chair this standing committee. I think it's long overdue that I personally thank you for the excellent job you do. Having served on other committees and having had various Chairs from different parties, I would say that indeed you're the best Chair I've served under. Now I'll botch up your mailing to your constituents, I'm sure, by suggesting that you might mail this to your constituents, but none the less, thank you.
In particular, I'm impressed with the way you make difficult situations easy for all of us. It's never easy when people with very emotional stories come before this committee and tell us about their lives. You have a natural ability to put people at ease. I thank you for that and for the leadership you've shown us.
Mrs Sullivan: Hear, hear.
The Chair: Thank you very much.
Mrs O'Neill: Mr Chairman, I would certainly concur with those remarks.
The Chair: "However," she said.
Mrs O'Neill: No, I have a question. The report now has been accepted by the committee. Is it now public?
The Chair: No. It will be when I present it to the House. At that point it will be public, and we'll be able to do that within the next couple of weeks, at most.
Mr Wessenger: Mr Chair, could I also add my congratulations? Just so I don't get into trouble, I would say that the Chairs I've served with in the social development committee I've always found to be excellent.
Mr Jim Wilson: Be specific.
Mr Wessenger: There were two committee Chairs and I found them both to be excellent. But I must compliment you in helping us reach the consensus on this report. It was very much appreciated, and I concur in appreciating your sensitivity in dealing with this issue and with the witnesses.
The Chair: I should undoubtedly add that never have I worked with such a nice group of committee members.
I might too, just on the committee's behalf, thank all of the staff who have assisted us with the committee. You'd understand particularly if I mentioned Bob Gardner, who took our words and put them into a reasonably articulate whole. We want to thank everyone and to thank the witnesses who came before us.
With that, the committee will stand adjourned until next Monday at 3:30.
The committee adjourned at 1708.