Hospital Guidelines for
Children with Sensitivities

Dr. Lynn Marshall and Dr. John Molot
Canadian Society for Environmental Medicine
Leslirae Rotor and Elizabeth Hare
Allergy and Environmental Health Association of Canada

National Conference on Children with Sensitivities
Allergy and Environmental Health Association of Canada (AEHA)
Ottawa Branch

Ottawa, 31 May 1996

Greg Booth, President
Allergy and Environmental Health Association

Dr. Lynn Marshall is a physician in the Environmental Health Clinic at Women's College Hospital and a research associate at the University of Toronto's Environmental Hypersensitivity Research Unit. She is the past president of the Canadian Society for Environmental Medicine (CSEM).

Dr. John Molot is a person that I've heard about since I've been sick and that's quite a few years and it's really an honour to meet you and I'm looking forward to hearing you talk. Dr. Molot is a physician who's been working in the field of environmental medicine since 1980. He is the medical advisor and chair of the working group gathering health data for the federal task force on material emissions and indoor air quality and he is a member of the focus group at the University of Toronto, Department of Biostatistics in Preventative Medicine for the Environmental Health Clinic at Women's College Hospital. Dr. Molot is also the current president of the Canadian Society for Environmental Medicine.

Leslirae Rotor is an economist involved in third world development work. She is president of the Ottawa Branch of the Allergy and Environmental Health Association (AEHA Ottawa) and is the National Capital Representative for AEHA Canada.

And everybody knows Elizabeth Hare. Elizabeth is the person that did the fine job this year and I must say thank you again. Elizabeth is active at both the branch and the national levels of AEHA. She and Leslirae co-authored Accommodating the Needs of Students with Environmental Sensitivities and Planning Your Hospital Stay: A guide for persons with sensitivities.

Elizabeth Hare:

Dr. John Maclennan was the first person to draft guidelines for persons with environmental sensitivities. A subsequent draft was worked on by CSEM. AEHA first became involved with the CSEM guidelines when the guidelines were given to Estelle Drolet - she's a long standing member of our association. She was planning a hospital stay for her daughter. Estelle, being the perfectionist that she is, wanted a really nice copy to give to her surgeon so she retyped them.

Soon after we took a look at them and we talked to Lynn Marshall and asked her - she was president of CSEM then - for permission to work on the guidelines and to bring more of a patient perspective to them - a consumer perspective. We then reviewed the guidelines with several members of the Ottawa Branch; we revised them and sent them off to our other branches around the country for feedback.

We then met a couple of times with Dr. Marshall and Dr. Molot and we jointly decided that it would be best to produce two sets of guidelines: one for health care workers and professionals and the other for consumers. Now CSEM continues to work on the set for health care workers and we are working on the consumer set. But the goal is to have both documents have the same look and feel, i.e., I'm going to do the desktop so they look consistent, and that the message that they convey is consistent so that the consumers and the professionals will be giving the same message.

To find out just how relevant the guidelines are, the Ottawa Branch hosted a general meeting in March of this year with the theme, "Sharing Your Hospitalization Experiences". Both Dr. Marshall and Dr. Molot attended and members described their experiences at local hospitals including CHEO. The consensus was that the guidelines for health care workers and physicians should provide information on a need-to-know basis. In other words, what does each department, such as nursing, food services, maintenance, surgery, anaesthesia, need to know to improve your hospital stay.

The final product will include either health bulletins that can be posted or brochures with a master document including all information which will be available at each hospital. The information will be provided in a succinct document addressing the patient's needs so that professionals will only have to read what is relevant to their involvement with the patient.

The patient guide will be comprehensive and will provide detailed information on patient options for preplanning a hospital stay or for options should you have an emergency admission.

We continue to work with CSEM to ensure that a consistent message is delivered in both of these guidelines and as was mentioned, the consumer guidelines may have the title, Planning Your Hospital Stay: A guide for persons with sensitivities.

Dr. Lynn Marshall:

Just to fill in a little bit of background too from the Canadian Society for Environmental Medicine, as Elizabeth was saying, the original set of guidelines emanated from Dr. John Maclennan. Necessity is always the mother of invention. What happened was that in the 50s and 60s when John Maclennan was seeing people out in his practice, he began realizing that when people who had sensitivities went to hospital they definitely had needs that had to be addressed which were not being addressed because there were no guidelines for physicians, nurses and other hospital staff.

So he drew up the basic guidelines and sent each of his patients who had to go to hospital off to the hospital with the guidelines. When he was admitting them it was no problem because he personally made sure that the staff at the hospital knew what it was about. But what he soon learned was that if people were admitted under somebody else then he didn't have that possibility of sort of selling it to the hospital staff and letting them know what was required and making sure that the guidelines were implemented. So he soon realized that there was a difficulty there.

So what he did was to give the written guidelines to the patient, have them take the guidelines to the admitting physician and offer to be a resource for the admitting physician. That did work reasonably well on an individual case-by-case basis. But, it was still not a general thing and this was not good enough.

So, when the Canadian Society for Environmental Medicine came along in the 80s, the physician members started to do the same thing as he had done and again encountered the same problems; they added their own ideas, and so on. What we were encountering also was that there were some hospital staff that really had some unfortunate attitudes that were not helping people when they went to hospital. This was really a concern.

So another impetus that came to really get us to do more work on these guidelines came from Anna Rose Spina because she was working with a very sensitive patient who needed admission to a hospital. She wanted something that she could hand from the Ministry of Health to the hospital which might have a little bit more clout and might get this patient some services. So CSEM got the ideas from our members and revised the content of the guidelines. We gave them to Anna Rose Spina. It was also at that time that we passed them over to AEHA and asked for feedback - tell us what it is that consumers need because that's what we need to know.

So, then we began meeting with our little subcommittee and AEHA's subcommittee. To me the most helpful thing of all in this process was that panel meeting that AEHA had because the people in AEHA Ottawa Branch were saying directly what their experiences had been in hospitalization, what things had worked, what didn't work, what was helpful, and what was not helpful. In fact, Estelle Drolet had actually handed the draft guidelines out to the surgeon and also to the nursing supervisor - or attempted to - when her daughter was being admitted. The feedback at that meeting was absolutely essential. It was very helpful to get the content in order. I think some points that came out of that meeting were pretty impressive.

First of all, as Elizabeth Hare has already said, medical information is more likely to be well received by medical staff if it comes from a medical source. But, people with sensitivities or their parents for children need information on how to plan for hospitalizations whether elective or emergency. If it's an emergency admission you're not going to have time to organize all of these things. You need to think ahead and have a kit or have something planned ahead. We felt it was very important for the consumer group, for AEHA, the support group, to supply information to their members and to members of the public who might inquire, on how to plan for their hospitalization.

As Elizabeth said, information has to be very brief and absolutely need-to-know basis - preferably on single-sheet protocols for each department. I've been trying to revise the CSEM part over to that format. So the idea is that we would have the guidelines separate but they could be distributed together and can be distributed to members of your organization, our organization, and other charitable organizations that have inquired - anybody who inquires to either of our organizations or the other charitable organizations and possibly directly to interested hospitals. The other thought was that we need to vet the drafts, and then perhaps pilot them in interested hospitals and consumers and we already have some ideas where we may be able to do that - for instance, Women's College Hospital. Frank Foley and Anna Rose Spina have already agreed to do that for us at Women's College.

Another possibility may be if a particular hospital were willing to be a catalyst to try to speed adoption by other hospitals so that it became as Heather Holden was saying earlier, it became policy which is going to make life a whole lot easier for a lot of people. That may be another possibility. They could pilot and print their own versions with appropriate acknowledgement.

Dr. John Molot:

Before I start what I want to say, I'd like to thank individuals who thanked me or mentioned my name because it's very ego gratifying to be stroked. But the real thanks should go to you as a group and the patients who taught me a lot of what I know. I'm supposedly an expert and where my expertise is with respect to the accumulated scientific published knowledge regarding indoor air, etc., which leads me to a statement that in an ideal world you shouldn't have to go to the hospital and ask for things specific to your needs. Because the way the hospital is supposed to work is that if you have a particular illness they're supposed to know more about it than you do and they should be accommodating your needs. So, really the problem is, of course, to get this information into the health care community which is our shared battle as doctors and consumers. And sometimes you must get frustrated and say, "Well, why can't we? The ideal thing is, just go clean up the hospital." So, I'll give you some of my experiences working on this task force and sort of sitting on the outside. I don't really have the illness. I treat people who have environmental sensitivities and I try to understand the dynamics. It might help you to understand the confusion and the slowness with respect to why the hospital is not going to be cleaner and why you're going to have to go in there and ask for - or battle for - clean accommodation.

The basic problem is that the standards that are used for indoor air quality, as we all know or as we all feel, are inadequate. They're inadequate for several reasons. One reason is that when standards were created, we were looking at the wrong things. I've heard many times today about how they shut down the ventilation in the schools on the weekends and so on and it seems so ludicrous. But actually, according to the rules, they're really not doing anything wrong because the rules are wrong.

The ventilation standard that we have in Ontario is based on the amount of carbon dioxide in the air. So, to give you an example, outside right now it's a nice day and the carbon dioxide levels are about 350 parts per million (PPM). Carbon dioxide is not toxic for us until it gets to about 10,000 PPM. But we use carbon dioxide as a measure because when we get into an enclosed space and we start breathing we're sucking up oxygen and blowing off carbon dioxide and so the ventilation system has to accommodate our needs and provide oxygen and blow off the carbon dioxide. So the simplest, cheapest way to measure ventilation is to measure the carbon dioxide level. The level used in Ontario is 1000 PPM. Well, where did they get the standard from? It came from the 1930s and it's based on detectable human odour limits. So, our standards would probably be improved if you all would stop washing because they would ventilate this place better. [Laughter.]

On the weekends in the schools and office buildings when there's nobody there to produce carbon dioxide, they can shut down the number of air exchanges that they have to do and it's perfectly okay according to the standard. The problem with doing that is that it's not that the air is stale, but the problem with indoor air is that we take the air from outside - however polluted it is - and we add more stuff. It's the gassing off, the material emissions, that's the kind of thing that you're talking about today in trying to use materials in new homes or in renovating homes and schools and so on, to decrease the amount of chemical pollutants that you're putting into the air. The ventilation standard today just from that alone is inadequate. And it's inadequate as well in hospitals because they use the same standards.

The problem with hospitals is that they're just like regular buildings. Some of them have carpets, they paint them from time to time, and they have people going around cleaning the floors with various cleaners. But because it's supposed to be a safe environment and because it has certain problems unique to it such as disease, we use a lot stronger disinfectants. We put more chemicals into the hospital environment than we do into a regular public building. We clean them more often. There are deodorizers and all kinds of things because if you've ever been in a hospital, or especially on certain wards, there are sometimes some pretty foul and pretty intense odours. Just all kinds of things that are a bit more unique to a hospital.

You may find this interesting. NATO - which probably seems like a pretty useless group right now because they have nobody left to go to war against - has always apparently had an interest in the environment. They're focusing more on environmental issues now and they've had two international meetings in the last year and a half and the one they had last fall was on indoor air quality in hospitals. So there are people starting to look at this issue. But as we bandy about what are the problems, the research that has not been done about the various chemicals is looking at people with sensitivities. So some of the research is done with: "Does it cause cancer or not?" "Does it cause anything that's been reported in the literature?" So they do literature reviews. They look at each individual chemical. And most of the literature on multiple chemical sensitivities is not looking at an individual chemical.

The other problem, of course, is that in standard medicine it's a well known phenomenon that the more drugs you take, the more likely you are to get sick. Fifteen per cent of the admissions to a hospital are senior citizens - they're the ones that tend to get admitted to hospital more. Fifteen per cent of those admissions are drug induced from multiple drugs. This whole idea that there's a whole pile of chemicals out there that on an individual basis may be very safe but collectively can create all kinds of problems just seems to be something that's just starting to be understood. So, how do we study all the permutations and combinations of the chemicals? Right now in this building (This is a pretty clean building so it appears. Everybody looks reasonably okay, not too many people are sleeping right now!) there are at least 25 significantly measured chemicals floating around in the air and no one has ever studied the combination effects of these things. If we're ever going to do that it's probably going to take us 50 years.

So, what's happening in Canada and in the task force - the European Community has a task force, the Americans have one as well - is that there seems to be a movement that we have to do something before we come up with the research. So you may be happy to hear that. The first country to actually do something is Denmark. Denmark is now putting into their building codes as guidelines that the upper limit for any particular chemical or material is odour and that's a start. As has been mentioned by some of you, odour may not be good enough. Just because a chemical doesn't have an odour doesn't mean it can't affect us and we all know that. Anybody who knows anything about the environmental control units and how you do challenge testing knows that. If you're going to challenge test somebody to see whether they're chemically sensitive to a particular substance, you have to be able to hide it. So it has to have no odour. Some of the studies have been done by sticking an odour in everything so that you can't tell what it is that you're smelling but then everything makes you sick including the placebo so that didn't work. So you have to be able to expose people to chemicals where there is no odour so it has to be tiny little amounts. The point of that is that if we just use odour as a standard it still won't be good enough.

But there are things happening out there and they are very slow. But certainly, a place to start is odour and if we can get the message across to the hospitals and the hospital administrations that "No scents makes good sense" as the nurses in Nova Scotia taught us, that would be a big start.

We'll get back to the kids in the hospitals. So, who tends to be hospitalized? There are all kinds of horrible things that we see with kids in hospitals - trauma victims, cancer victims and kids with bad kidneys and so on. But any of those kids could possibly also have environmental sensitivities. The ones that would probably be more pertinent to us are the kids who are admitted because they're asthmatic. Lots of asthma. Asthma's on the increase. Fifteen per cent of the pediatric population has asthma. Well, would you be satisfied if your child is admitted for asthma therapy because he's so sick and that the nurses are wearing perfume. There's something wrong with that. Even the standard medical profession knows that for asthmatics chemicals with odours: a) can cause a sensitivity reaction, or b) could be an irritant. Either way, someone should put into place a policy so that the nurses can't wear perfumes anymore. And we should push for a little bit more than "What can I do for my kid?" As a group we should be approaching the hospital organizations and so on and say logic dictates that you should do something. The weight of the evidence is there - enough that why do we have to wait for the perfect research to be there? We have to clean up the environment.

Kids show up in emergency departments with things like recurrent ear infections. If you've every been in emergency, there are always kids in there with ear infections and they're really, really common. So what kind of kid has environmental sensitivities? Well, usually one point in that long history even if they're 12 years old with learning disabilities is recurrent ear infections. So when those kids are entering into the hospital or going to the hospital for surgery or tubes or tonsillectomies and so on, how many of them are being assaulted - bad word, but assaulted, so to speak - with respect to the exposures in the hospitals. And how many of them are being treated with antibiotics with good success and rightly so, but repeatedly so, who end up in offices like mine because they develop yeast and mold sensitivity because of the repeated exposures. So you can go on and on and I'll stop here.

Leslirae Rotor:

At this point, there are a couple of things I want to say. One is that as John has mentioned, a lot of illness is iatrogenic. In fact, before I was actually diagnosed, I was extremely ill and at that point I started doing some research to try and find out what was wrong with me. At that time I had been working on a Ph.D. at Cornell University and when I became that ill I was suddenly unable to even read or understand the plot from books for my 3-year-old daughter. I would fall asleep on every page. I would re-read every sentence and I could not comprehend the sentences and there were only two sentences on a page and they weren't very long sentences. And I would have to be shaken awake on every single page. Now at that point Stephen Talmage went and dug up articles from the Ottawa University Medical Library and he would bring me medical articles and would write a precis for each article. Then my daughter on one side and he on the other would shake me and try to keep me awake, and I would have to read and re-read every paragraph. It would only be two paragraphs so that I could understand this medical article and see if it would pertain to what was wrong with me.

In the course of that search, I learned a lot of things including one which was that medical expertise is still in the dark ages with regard to most chronic illnesses and that most doctors have been trained to pretend they have the answers when in most cases they haven't got a clue. I want to make it clear that John Molot and Lynn Marshall aren't like that. I once told one of my doctors that I didn't consider him a doctor and I meant that as a compliment. In the medical journals they're much more frank because physicians are dealing with their peers. One of the articles we read admitted that 50 per cent of illness is iatrogenic which means that the illness is caused by the doctor's treatment or drugs or whatever, but it's caused by the treatments people are receiving.

Now one of the things that led us to get involved in writing the hospital guidelines was that many people faced with a hospital stay and having environmental sensitivities are often more afraid of going to the hospital than they are with dealing with a car accident or dealing with the injury or dealing with the illness that they have whether it be environmental sensitivities or some other illness. And the reason for that is because of attitudes. It's not that there's anything very difficult about dealing with them. It's that when you're in your own home and you've got control over your own life, you can look after yourself. But, when you are in an institutional setting, you are often helpless to control certain things that are going to present to you. They may be very intimate such as the food you're eating, the air you're breathing, the water you're drinking, etc., the drugs that are put into you and other things like that.

In the course of working on these guidelines, the sorts of feedback and reactions we've gotten from other consumers has been very interesting. At this point we're trying to finalize the document so that we can actually get it printed and released. I've got a question to put to the people here. The philosophical debate that's going on with the feedback that we've been getting, has to do with whether the guidelines for consumers should be brief and reassuring or whether they should be detailed and comprehensive so that people have as much information as possible.

Now there are drawbacks to both sides and pros to both sides. Personally, I am of the view that the more information a person has, the more empowered they are and the more they can deal with the situation. But I also recognize and people have explained to me and I think they're starting to get the message through my thick skull, that people are sometimes overwhelmed by finding out how much could go wrong and they may actually be paralyzed by the idea of all these things that they hadn't even thought of that could go wrong. So, I'm wondering, basically, if before we write our final guidelines, if people here could give us some feedback today, and maybe you could line up at the microphone - I'm also inviting questions for Lynn and John because they will be finalizing the guidelines for doctors and that's a separate issue from the one I'm putting forward to hear from you here.

Questioner #1 (Stephane Lecouffe): I feel that the public should have the most information possible. Then people can make a decision based on facts. If they don't have the facts they don't know what they're deciding. You have to be armed with the facts before you go to a doctor - what procedures can be done to you and the options you have.

Lynn Marshall: One option too, of course, is that since we're going to have two separate sets of guidelines, if they're both available then, I mean, everybody can read, so that's the other option. We don't have to repeat everything in each of them. There would be the hospital staff one and the audience is the hospital staff for one and the audience is the people who are planning their hospitalization for the other. It's sort of how to get the information to the people that need the information or how to get their own little kit ready to go, or how to find out what they need to know.

Questioner #2 (Claudette Guibord): From my own experience, I have made my own patient guide that the medical staff never reads. So what is happening to me is that I no longer accept the medical student per se and now my treatment is controlled when I go to the hospital by staff only. Because the student is not reading and following instructions laid out for me. What I have also found out is that when dealing with the medical student, they don't have the authority to write up the guidelines that you need. So you, therefore, really have to go to staff.

Lynn Marshall: This reminds me of the panel night. John, said: "When I was an intern, I knew everything. I had to go out into general practice to find out how much I didn't know." I think that there's a lot of truth to that. One is taught in medical school a lot of facts and a lot of book knowledge. It isn't the same as what real life is about. Because descriptions of conditions and descriptions of treatments are about descriptions of what is in a population. In other words, these are the most common patterns of symptoms that describe a particular disease and these are the most common effective treatments and their mostly commonly safe ones and so on. But each person is an individual. So one has to be very conscious of that for sure. We have a long way to go; that's why we have to work together and figure out the best way to get there. You know I was very impressed with how - and in fact I took notes - they did it in the education system [Halton Board of Education]. Because it's policy we've got to work towards, I think.

Questioner #2 (Claudette Guibord): Well, I'm very upset with the Toronto Health Corporation which did not accept us as a group because they have the organic proof. They have the ventilation system because they're in the transportation field, and we're now at Women's College Hospital which is in a poor house and we're having to start from scratch and build it all the way up.

Questioner #3 (Madeleine Lapointe-Miller): I don't know whether this will fit in but from my experiences with my two children at the Children's Hospital, after long practice I think I managed to be diplomatic enough to speak to the staff with one exception, in such a way that I actually didn't "set them off". But I think it might be useful to have guidelines that relate to semantics because I found, for instance, I never say "allergy" anymore. The first thing they ask you is, "Does your child have an allergy?" And I go, "Oh!" Then I start with, "Well," and then I say, "He [or she] is allergic to pollens and has sensitivities to..." I think that semantic thing is really important because that seems to be something that sets them off. I've had people react to me - doctors, nurses. I've said "Allergy" and they say, "What are you talking about? That's not an allergy!" Or, I say, "Well, yes, but if you give my child this food, you'll have to strap them down first." And you get into the Tourette's thing. So maybe, how do you talk to the staff without getting their backs up?

I have a feeling that it would be very difficult to do that diplomatically, but I think it's important.

Greg Booth: I think it is, too. One of the things that we tend to do especially if we're reacting ourselves or reacting because our kids are reacting, is that we tend to get what I call the "nasty drunk" syndrome. At least that's what we appear like to regular people. It's really hard to get somebody to do something for you when you're in the "nasty drunk" mode, shall we say.

So, thank you. I'm going to end this right now.

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