Wednesday, December 23, 2009

“What Do Patients Want? A Critical Look at Healthcare Delivery in Canada”

Transcript of a Presentation made at Breakfast with the Chiefs

Tuesday, September 15, 2009 – Toronto, ON
University of Toronto, Health Sciences Building,
Room 610, 155 College Street, Toronto, ON

Speaker: André Picard, Journalist, The Globe and Mail


Note to Reader: This is the transcript of a presentation by journalist André Picard. Live presentations are not meant to be papers or articles unless they are thoroughly edited and even rewritten. To do so loses the flavour, and so we have limited our edits to provide you with a document that resembles Mr. Picard’s presentation. We have made only minor repairs. For the actual presentation made at Breakfast with the Chiefs, please visit here.

André Picard is a celebrated author and the public health reporter at the Globe and Mail. He spoke at our own Breakfast with the Chiefs session most recently and here he is, introduced by Anton Hart.

Anton Hart
Ladies and gentlemen, we never introduce our speakers because they’re well known to us, and André, you are no exception. André Picard.

André Picard
Great. Thanks, Anton, and thank you for the kind introduction. I’ve set my stopwatch so that I finish on time. I hope to keep it relatively brief, so there are questions and heckling and stuff, because I know when you have the opportunity to get a journalist up live, you’ve got to vent, so I don’t want to deny you that opportunity.

There’s a lot of talk these days about healthcare south of the border, with President Barack Obama trying to do the seemingly impossible, which is reform the dysfunctional $1.3-trillion a year healthcare system in the US. And I use the term “system” there loosely, because they don’t really have one.

But the debate, like the health system itself, has been dominated largely by vested interests. I’m watching it, just like you do, from afar. People like the insurance industry and dogmatists from all across the political spectrum – right and left. Rarely in that debate do we hear from patients, or more specifically, from patients without a political agenda or not hired by a group with a message to sell. Rarer still is to hear patients articulate what they want or expect from a health system. And that’s not unique to the US discussion; we have the same problem in Canada.

So I want to spend the time I have this morning, that you’ve graciously provided me with, this podium, to try and ask and answer that question: What do patients want? Sort of a twist… I live in Quebec, so it’s a twist on the age-old question, “What does Quebec want?” But maybe what patients want is a little simpler, if that’s possible. But I think it’s a fundamental question, and unfortunately it’s one that we almost never ask; we never just sit back and just take a step back and say: What do patients want and how can we give it to them? And even if we do ask it, we rarely wait to hear the answer, because we don’t necessarily want to hear it, depending on our position of power.

I once wrote a story that showed that doctors allow patients to speak on average for 24 seconds before they interrupt them – that’s the kind of science we need to read about. I dare say that many healthcare administrators and policy makers are even more impatient than doctors. I’m not sure they give patients even 24 seconds before interrupting and telling them what they think or what they should think.

Now there are those of you in the audience who will say – and maybe fairly – that you can’t answer the question: What do patients want? That’s an impossible question. There are too many kinds of patients; there are a whole myriad of them, and that’s true. There are all kinds of kinds of conditions. And there are an even more vast number of responses to health-related predicaments. But I still believe that patients share a lot of common traits. We can get a sense of what a Patient with a capital “P” really is.

First and foremost, nobody wants to be a patient. There are the defining criteria, I think. There’s one exception that I can think of and that’s pregnancy, and I’ll come back to that one later. But it reminds me of the old Woody Allen joke. He would say, “Why would I want to join a club that would have me as a member?” That’s a bit how patients feel – you don’t want to be there.

As much as Canadians love medicare, and nurses and doctors and their hospitals, nobody wants to be in a position to use them – to be sick or wounded, or demented or whatever condition they have. It’s strange then, given this near universal desire to not be sick, that we do so very little to keep people well and to give them the tools to stay well. That’s a fundamental flaw in our system. You know that well, and I’m not going to harp on that one too much, although I’ll do my fair bit of harping today – don’t worry.

You know that we invest a pittance in physical health and even less in mental health, and we pay the price for it at the end of the line. I often write in the paper that in Canada we have a sickness care system, not a healthcare system, and I think we have to fix that. There has to be a fundamental change. But if we look south of the border, it’s a bit frightening. It tells us how difficult fundamental change is going to be. It’s going to hurt and we have to realize that, and I think we should take our pain in small doses, not all at once, so we should start changing gradually now and not wait for a crisis.

Now we can talk about this growth contradiction and why do we invest only in sickness and not in health a bit later if you want, but as I said, I think you know that dilemma very well. I want to get back to talking about the typical patient.

When they require medical care, patients want the care to be good, they want it to be quick, and they want it to be easy to understand. I don’t think it’s any more complicated than that. But those are fairly basic and essential demands that they have. In other words, Canadians want the care to be there when they need it; to me that is the rallying cry of medicare, that’s what it’s all about. Be it a visit to ER for a broken arm, a bypass surgery for a clogged artery or arteries, radiation for breast cancer, monitoring of blood gases for people with COPD, or a long-term care bed for a patient with Alzheimer’s, they all want the same thing – good care, quick care, available care. These desires, once again, are near universal – you won’t get any debate among patients about that. Care should be easy to access and easy to understand – that should be our goal; it’s what you should do every morning when you get up and go to work.

But navigating the healthcare system is something else entirely. It can be of dizzying complexity, even for the most savvy patient, and it shouldn’t be. It shouldn’t be as difficult as it is, and I’ll again come back to this issue a little later.

Another expectation of patients or of Canadians is that their care will be free, and I use the term “free” in quotes here. I’m using it very loosely in the Canadian sense of “free,” meaning we pay for it with our taxes. I’m not sure if that’s in Wikipedia, but that should be the Canadian definition. In other words, the typical patient believes they should not have to pay for care out of pocket – that it should be covered by their beloved medicare. After all, that’s where about 40% of our tax dollars go – 40% and counting, I’d say. Again, there are some important subtleties here, and I’ll return to them in a little bit. But again, that’s a pretty universal feeling.

I’ve laid out the expectations of Canadians as I see them, and I don’t think they’re unreasonable. Prompt, good, accessible insured care from birth until death – that’s what we expect. That’s what we can afford. We’re one of the richest countries in the world. For $172 billion a year, and that’s our current level of spending until CIHI publishes their next numbers, with another $10 billion or so every year. For that kind of money, there’s no reason we can’t deliver that on that promise. But those expectations are far too often unfulfilled. So I want to ask you why that is. Why can’t we do the seemingly simple and the desired? We have the money for it, we have the ability to do it. Why don’t we deliver? One reason I think is that no one is speaking up for the patient, and that’s what I want the focus of my talk to be this morning.

In our healthcare system, the patient is all too often an afterthought. They’re not the centre of our being and our doing. In our healthcare system, we have an endless supply of lettered organizations. I saw a few of them roll by there; we’ve got OMA, OHA, ONA and so on. All the “O” words in this province and the “C” words nationally; and that stands for Canadian, those of you with a filthy mind.

Absent from the list, and I could do a long list because I write about acronyms all the time, notably absent from the list is something like OPA. Where’s the Ontario Patients Association or organization? In fact, in Canada there are more organizations to defend doctors against lawsuits from patients than there are organizations speaking for patients. That tells us something about our system, and we’re not even a litigious system. But there’s a big hole there in my view.
Sure, there are all sorts of patient representatives on boards and lobby groups and institutions, have patient councils and the like, and this gives these groups credibility – but I’m not sure it gives patients what they need. For all the talk of patient centredness and the like, in my experience, more often than not, this is tokenism; let’s get a patient on there, it’ll make us look good. Patients don’t have enough real power in these groups, and that’s why they’re taken for granted.

Now I’m only aware of two significant organizations where the word “patient” is in the name in Canada, and I come across a lot of groups, thousands of them. There’s the Patient Safety Institute – that has the magic word Patient in it, but it’s not strictly speaking a patient group, as you know. It was only created after our system admitted, with much reluctance, that adverse events kill about 24,000 patients a year. That’s a pretty heavy price to pay to have a group with the word patient in it. So that’s not a patient group, strictly speaking. The only other group I’m aware of that speaks broadly and directly for patients is the Conseil pour la protection des malades, a Quebec group; very small, unknown outside the borders and largely unknown inside the borders of Quebec. That’s the only truly patient-centred group that speaks broadly, not for a specific disease concern. I’m a bit baffled as to why we don’t have one in Canada.

Now, there are those who will say, hold on, we do have a lot of patient groups. We have the Canadian Cancer Society, Heart and Stroke, the Lung Association, etc. Now it’s true these consumer groups play an important role. I think they play a fundamental role in our health system, but they have specific and narrow concerns – and that’s not a knock on them, that’s their jobs. The patient, when you look at this collection of groups, has been reduced to a collection of body parts or disease entities, and that’s not good. These groups, for all the good they do, are not speaking for the patient as a whole and for their broad concerns across the whole care spectrum, and they’re not necessarily patient controlled. So again, I don’t think that that voice of the patient is there, and I hope I’ve convinced you that the voice of patients is not being adequately heard and that that needs to be remedied. It probably shouldn’t be remedied by people in this room, it should be remedied by patients, but give them the tools to do it and I think it’ll happen.

Now I want to shift gears a bit and give you a sense what I think patient representatives would be saying if they were given an opportunity and a forum and a group to express themselves, just as you have many groups represented here on the professional side. But maybe I should only tell you what they’re going to say after you’ve given them a group and given them money to create it, because you might not like what I say. So just take this and put it in your pocket and still help them set up those patient groups, regardless of what I say.

I want to state upfront that my comments aren’t based on any scientific inquiry or anything scientific. In fact, I’ve made a determined effort this morning to have no numbers in my speech; it’s early in the morning, no PowerPoint because I have a… I go into anaphylactic shock. I’m allergic to PowerPoints now; I go to too many conferences. This is an impressionistic view that I have of what I think patients would tell you, if they were given the opportunity in a formal structure to do so. But I hope it’s a fair representation based on the time I’ve been in the health system. I’ve been doing this job for a couple of decades, and have a couple of decades of experience as a caregiver to parents with long-term chronic illnesses. So that’s where the background comes from and that’s where my views come from, and I should mention that while I live in Quebec my parents lived in Ontario, so some of these comments I hope hit close to home – only the bad ones, not the good ones.

What I hear first and foremost from patients, and this is not something we read in the newspaper or hear on the news very often, is something very important. I hear that we deliver really good medical care in this country. That’s reflected in satisfaction ratings. If you read them, they’re consistently very, very high, and we have to distinguish here between polls that poll patients and polls that poll the public. One of the paradoxes of Canada is the people who are in the health system love it and those who are not in it think it’s a disaster, but there’s another Canadian trait. So I think, look at the satisfaction ratings; we do a great job of delivering medical care. We do the plumbing well is the way I would put it. We have top-notch medical professionals, state-of-the-art medical equipment and an infrastructure that – I tried to find something good to say about it, let’s just say it’s passable. I’ll come back to the infrastructure issue a little later.

On the medical side, the bottom line is this: our outcomes are as good as anyone in the world, and we should be proud of that and that matters to patients. Now, I don’t want to give you the… I don’t want you to get swelled heads at the top, I’ll knock this down a bit later, but this isn’t all about medical care. In Canada, I think our social safety net is a really key contributor to the health of people, and we shouldn’t forget that. But today I’m talking about the health system, and it does a good job. So the care is good. I think we also do the business side well. When they look at us south of the border, if they’re honest, they’re envious of what they see – a very well administered system, cost efficient. Our administrative costs are a fraction of those in the US because we actually have a system and they don’t.

I often hear that our health system is bureaucratic and it has a lot of fat in it. Personally, I don’t see a lot of evidence of that claim. I think that’s largely political rhetoric, and it comes largely from people who are not in the health system. I just don’t think it’s true. It’s an easy thing to say, but there’s not much basis in fact.

We also do access and fairness well. That’s one of the keys to healthcare – is that it be fair and it be accessible. Thanks to our publicly funded insurance system, no one in Canada is denied basic medical care, and we often go well beyond the basics. Again, we compare well to any country in the world on that stage, and this matters to patients too. They believe in fairness. At the risk of this sounding like a jingoistic homage to medicare, let me also say there’s a lot of room for improvement. So let me get into some of that.

To me there’s something really essential missing from our system, and something that leaves patients and their family members really frustrated. I don’t think we do customer service very well, and that’s one of my bugaboos. If you read my column, you know I write about this often. I know it’s a crude way of putting it. People don’t like the word consumer or customer, but when you come right down to it, patient-centred care and family-centred care has to begin and probably end with good customer service. The person has to matter, and as I said before I’m not convinced that that’s the case right now. What does good customer service mean in healthcare? To me, it means anticipating needs, delivering care with respect – with a capital “R,” making it easy to navigate the care system and making amends when things go wrong. Now ask yourselves how many of those things we do consistently every day. I don’t think it’s enough of them.

In Canada we talk a good game about patient-centred care, but we don’t walk the talk nearly often enough. It starts right at the front door of our institutions. I spend a lot of time in hospitals. I’ve literally been to hundreds of hospitals around the country. I even go on my holidays; I drop in because I’m perverse in that way, just to see what hospitals are like. My children have also been kind enough as to have things happen to them so that I visit hospitals in remote areas. That’s always fun too, especially if you have a Quebec medicare card, which is like the plague in Ontario. But we won’t talk about portability today. So I’ve been to a lot of these hospitals and I’ve been lost in most of them, and I could tell you they’re not welcoming places. Most hospitals are dizzying mazes. They’re really difficult to get around, to navigate. To me they’re almost a metaphor for our care journey in Canada. You know, you got a good arrow pointing down a hall and then there’s no other arrow… [laughter] because somebody has painted or it’s been worn out by the shoe prints; I don’t know. To me, there’s a nice metaphor in there for what goes on when you walk around a hospital. I’m sure you’re all on Pill Hill here; I’m sure you’re familiar with what I’m talking about. At least when we put in new arrows, we should at least paint over the old ones, because I’ve made many circular journeys around your institutions.

I think hospitals are also for the most part ugly and uncomfortable. We seem to have an affection for neo-Stalinist architecture in Canada. We have these big grey institutions with endless hallways painted… I was trying to think of polite ways of describing them, but puke green and piss yellow is the only colour chart I seem to have found in most hospitals.

I try to understand why this is; I think it’s sort of the presbyterian background of Canada; a small lower-case “p” on presbyterian, but you know we don’t want to give the impression that we’re wasting money by actually making places look nice. I think that’s sort of a pretty short-sighted view of how we should care. I think our institutions should look nice. They should inspire confidence, and the marginal amount of extra money it would cost would certainly be worth it. I also think it’s hard to expect good health in an institution that looks pallid and unhealthy. We have to take that lesson. I have been often to the Alberta Children’s Hospital, called the Lego Hospital – beautiful spot. It inspires confidence in your care. That’s what all our hospitals should look like. There’s actually light in that hospital – imagine – patient rooms that have windows. In some places I’ve been, that doesn’t exist.

Now all too often, people in our healthcare institutions are as grey and grumpy as the institutions themselves. That’s another big drawback for me, as a patient or as a family member of a patient. They don’t look you in the eye. When someone speaks to you the most likely thing you’re going to hear in a Canadian hospital is: take a seat, wait, fill out a form. Not welcoming words, and I know there’s all kinds of reasons this happens; people are overworked, etc., but I don’t want to hear the excuses anymore. I want better customer service, and I think patients want it.

When patients go to hospitals, they’re frightened, and the way they’re treated makes the visit all the more frightening. They’re often isolated; they have nobody to talk to. I can’t tell you how many times my mother, who suffered from COPD and dementia and a number of other conditions later in life, I can’t tell you how often she was just stuck in a hallway for hours without… literally, without a pot to pee in. Too many people get treated like that. It’s insulting. They’re isolated, as I said. They don’t have anybody to ask simple questions to. Everybody’s too busy. That’s not good enough; that’s not good healthcare.

As I mentioned, because my mother had COPD, she lived with it for 15 years after they gave her two weeks to live. I always, at every public forum, like to thank doctors for their incompetency, thank you very much. The two-week death watch was prolonged for a decade and a half, and she got to see her grandchildren grow up, which was wonderful; but that’s an aside. In that time, she spent a lot of time in the health system and in hospital in particular – in the ER, on the ward, in the ICU, CCU, you name it. She went through the whole alphabet of our health system, many times. As I said, my mother loved her care. She loved her nurses, especially her home care nurse, etc. Never had anything bad to say about them. But she hated one thing above all. She hated the coldness of the reception she got, especially at hospital. In the hospital, and she lived in a small town, they knew who she was, but they treated her every single time as if she had never been there before. Even though my mom was a “frequent flyer,” medical staff asked her the same questions and got her to fill out the same forms every time. Even Air Canada treats its frequent flyers better than that, and that’s saying something.

Now you’ll notice I focus my comments here and my negative comments on hospitals and I’ve done so deliberately, because our system is hospital-centric. I think a little too hospital-centric. I think we have too many hospitals in Canada and too many hospital beds. I know that might get me lynched in this crowd, but I’m going to express the views I have. I think much of what we do in hospitals can and should be done elsewhere, and we should aim for that. I promised before I’d come back to the example of childbirth. To me that’s the most glaring example. The number one reason for admission to Canadian hospitals is still childbirth. How ridiculous is that? If we had a health system that was patient-centred, we’d have birthing centres and midwives coming to the home, and we’d stop treating childbirth as an illness. We have to get pregnant women out of hospitals. The vast majority of them don’t belong there.

I also think we have too many acute care hospital beds as I said, but conversely the most glaring shortcoming in our system today, again in my opinion, is the lack of available and appropriate long-term care beds. There’s a real yawning gap there of care, and one again that doesn’t get nearly enough attention. Our hospitals are filled, people say, “Oh, we need more beds; our hospitals are full.” Well, our hospitals are full of bed blockers – people who should be in more appropriate care. They should be receiving home care and supportive care in nursing homes or specialized care in long-term care facilities, and our medicare system should facilitate that. We shouldn’t have this ridiculous changeover where one day you’re a hospital patient and the next day, “Oh, by the way, we’re going to reclassify you and it’s going to cost you $2,000 a month.” There’s some real perversities in our system that we have to deal with, that people shouldn’t have to endure.

When we talk about wait times, it’s great that we’re doing hip replacements, etc. a little faster, but when we talk about wait times that’s what our focus should be. It should be on the intolerable and often inhumane waits for placements in long-term care. I can’t tell you how many hundreds and thousands of Canadians are suffering because of this. It should be a priority. But again, patients don’t have a voice, and in particular, seniors don’t have a voice. They’re a group that doesn’t speak out, that takes it on the neck all the time, and it’s awful the way we treat them by and large.

The move from acute care to long-term care is a transition, and transitions, as you know, are really important. Transitions are where we fail. I saw in the recent Longwoods, after I had written my speech, I saw a little title of an article about the hand-off. The hand-off is where things are going wrong, and while I wouldn’t use the football metaphor, I think that’s entirely correct. That’s where everything breaks down.

We do have these wonderful pockets of care all along the way, but our connections between them fail all too often, and that’s what frustrates people. There’s no reason that we can’t deliver a continuum of care, because we have all the elements in place, but we’re just not connecting them.

So, you know where these problems are occurring? They’re occurring in the transition from the family doctor to the specialist, from diagnosis to surgery, from surgery to home care, from ER to ICU, from acute care to long-term care. That’s where all the breakdowns are occurring.

Transitions are when patients are most vulnerable. Transitions are when patients fall through the cracks, and some of them don’t get found; they fall pretty far.

A big part of the problem, I think, is tracking, and to do tracking better we need electronic health records. Now that’s not today’s subject, and I know a lot of people have now broken out into a cold sweat because I’ve said e-health, but I do owe it to you and to myself to say a few words on the topic. I think to have patients dependent on paper records in 2009 is really an act of contempt; it’s a travesty in our health system. We live in an era of instant communication. We have someone sitting here sending Twitter posts, but we cross the street to these billion-dollar institutions and we still have paper records. It doesn’t make any sense. We have to be able to transmit health information in a modern fashion – we’re in the horse-and-buggy era in the communication of health information. It’s unconscionable and it’s bad patient care, and we have to deal with it as a priority, no matter how politically uncomfortable it makes us.

I have no intention today of delving into the politics behind the lack of electronic health records, in this province in particular. Apparently, it’s a sore point here, I’m not sure, but I’ve heard. But – let me say this as bluntly and quickly as possible – what do patients think about this? I don’t think patients care about who expensed their choco-bits. I don’t think they care that much about consultant fees. I think they care about the job being done. They care about the quality of care. As long as we depend on paper records, healthcare will not be as good as it should be. For me, the dithering and the politicking that surrounds the creation of e-health records is a symbol of misplaced priorities. This province doesn’t have electronic health records because more time, money and effort has gone into turf protection than into improving the collection and dissemination of information in electronic records. I know that, and I think all of you know it. So let’s get on with the job, and I won’t embarrass some of you any further now.

Customer service – I want to come back to that, but e-health is a key part of it. Customer service from the welcome desk right through to the electronic health record is not merely a series of activities. It’s a question of culture, and that’s why it’s not happening. It’s the culture that has to change. In Canadian healthcare we have a culture that says the needs of the system almost always take precedence over the needs of the individual patient. Maybe that’s the downside of believing in the collectivity, but you can believe in the collectivity and not put the demands of a system over those of the individual. We can balance the two. We have a culture that says investing in customer service is not a priority.

I’ve spoken extensively about patients, and maybe I realize that I haven’t been clear enough about how I define the term. We need to recognize that medical conditions don’t just affect individuals. When I talk about patients, I’m speaking much more broadly. Medical conditions affect entire families. Sometimes they affect entire communities depending on how they hit, but let me limit it to families, and that’s particularly true of chronic illnesses like heart disease or COPD or psychiatric illnesses. They involve a whole bunch of people, and a lot more than one person suffers and a lot more than one person has to be cared for.

In our system we treat patients… I think we treat them pretty badly, but we treat their families even worse. We talk a good game about including families in care, but the reality to me is we dump a crushing burden of responsibility on them and we provide very little support. Again, we can’t limit our care to the disease entity, to the person.

We send people home quicker and sicker, but we provide little training to their unpaid caregivers. There’s an army of unpaid caregivers out there. We provide niggling amounts of home care. We provide virtually no respite care for long-term caregivers; we burn them out. It’s not unusual for caregivers to die within months of their partner dying, and we’re killing them, to be blunt about it.

We also have a bizarre double standard about privacy. This is another thing that used to drive my mother crazy. We demand all kinds of things of loved ones, but when they ask for even the most basic information, we throw up our hands and say, “Sorry, we have Privacy Legislation.” Well, to the average individual, that’s nonsense. Families have a right to care without the additional burden of a bureaucratic blindfold. If the rules don’t work now, let’s fix the rules. Let’s make our system more patient-friendly and more family-friendly.

In discussing what patients want from a healthcare system and what they think of the health system, you’ll notice there are some pretty big topics that I didn’t touch on. Some of you may wish I didn’t touch on e-health either, but so be it. I’ve not, in all the time I’ve been prattling on so far, mentioned the words public or private, and I’m not going to do so at any length. I think the private/public rhetoric distracts us from the discussion of what really matters, and what really matters to me is what do patients want and how can we deliver it?

I don’t think the private/public discussion that takes up so much political time and so much air space really matters to patients, ultimately. Honestly, they could care less if their physician works in a private clinic, a public clinic, if their hospital is administered by the Ministry of Health, the Shriners, Wal-Mart… Honestly, people don’t really care about that. My mother always used to say, by the way, that she got much better customer service at Wal-Mart than at the hospital. They would actually remember her name. They would bring out the cart to carry her little oxygen tank as soon as they saw her in the parking lot. That’s customer service. Now, I don’t want to take the metaphor too far; I don’t want our hospitals to be Wal-Mart, but if you can do that with paying seniors minimum wage at Wal-Mart, God knows we can do it in our hospitals – there’s no excuse for not doing it.

What matters to people is not public or private. It’s the quality and consistency of care. What matters is that they can depend on the care to be there and that their insurance program – which we call medicare – is there for them. Now that’s all I intend to say on the private/public topic. As I said, it takes up way too much time and air space. I just wanted you to know that I’m ignoring the issue deliberately. It’s not an oversight, and if you want to talk about it more in the question period I’ll be happy to go on then.

Another thing I didn’t mention is the Canada Health Act, which if I recall my Canadian history was brought down by Moses on a tablet of stone [laughter]. I’m a bit… It’s been a little while since I was in high school, but I think that’s how we got the Canada Health Act or maybe it was Monique Bégin, I don’t know. I didn’t talk about those bureaucratic underpinnings of the system, and again, that’s deliberate. This notion that medicare defines us as a nation is something I hear over and over again, and once again I think this is nonsense. I would hate to live in a country that’s defined by an insurance program. There’s a lot more that defines us than that. Medicare is good; it’s a nice program, it’s a smart program, but it’s a publicly administered, state-funded insurance program, period. That’s how we should treat it, and as long as we get caught up in this religious admiration of medicare we’re never going to allow it to be updated and modernized and fixed, and it needs a lot of modernization.

Now that being said, I want to talk about the CHA a little bit, because again there is too much drama behind it and too much sense put to its meaning and how important it is. It’s a piece of legislation like any other, not a very well written piece of legislation, but it has some important elements. The most important of which are, as you know, the five program criteria. We often describe these as the guiding principles of medicare, but they’re actually program criteria. If your province doesn’t fulfill these, technically, they don’t get money from the federal government. In reality that’s not true, but at least on paper it’s true. Let’s do a little reminder of what they are. This is what was carved on those tablets of stone by the Lord himself:

Public Administration – The Provincial Health Insurance Plan must be administered on a non-profit basis and audited yearly.
Comprehensiveness – The Provincial Health Insurance Plan – this is my favourite quote from the Act – “Must ensure all insured health services.” [laughter] I don’t know about you guys, but I had to take Philosophy 101 in university and that wouldn’t have cut the mustard, but there you go. That is what it is.
Universality – All insured health services must be provided on “uniform terms and conditions.” Again, a nice vagueness there.
Portability – Insured health services must be paid at a rate set by the Province even if a patient is treated in another jurisdiction. Well, I mentioned before I have a Quebec health insurance card, so I won’t talk about that.
Accessibility – The Provincial Health Insurance Plan must provide “reasonable access” to services and must provide “reasonable compensation” to medical practitioners.

There are our five guiding principles. That’s why I don’t want our country to be based on this, thank you very much. Those are important to know, but this isn’t going to inspire people to go out in the streets. This isn’t going to inspire love. Medicare is something more than that; it’s more than the Canada Health Act, but that’s its basis, so let’s not lose sight of that. It’s an insurance program, it’s nice – la-de-da. While it’s not mentioned by name, I do think that there are other principles that are implied in there that are important.

I think why we have those five elements is they’re designed to ensure fairness and equity; not necessarily equality – equity and equality are different words – but that’s what the goal of the Act was, among other things, and to stop doctors from extra billing, but that’s the fundamental philosophy behind it – let’s have fair, equitable healthcare. I think Canadians by and large believe in that. They believe in fairness and equity, and that’s why they support medicare, even though they’re not conversant with all the nitty-gritty of the circular arguments within the legislation.

I also think there’s a sixth principle that’s implicit in there, and it’s one we don’t talk about nearly enough. I think that’s accountability, or some people call it affordability. But I think that’s where the patient service comes in, or the customer service. I think there’s an accountability there that’s implied in all those measures that we again don’t respect enough.

Canadians are a practical lot of people. Not many people believe that all medicare can be provided to all people at all times on an unlimited basis. I think Canadians are more realistic than that. Patients know intuitively that there are limits to the care. Again, this is another topic I write about and I get lots of hate mail about, but I think people know that; that there are… We have to set in-points. We can’t just fund everything forever and without limits. I think people accept this notion that care has to be rationed in some way, and I know I’m using the ugly “r” word, but to me rationing is not a bad word. It’s a reasonable expectation and something we have to do in an insurance system, public or private or otherwise. People have to know that; we have to be honest with them about that.

The problem isn’t rationing, the problem isn’t saying that some stuff isn’t being covered. The problem is that we’re not clear in any way to patients on how the lines are being drawn. There’s a constantly moving target and again, it’s not fair to them. To me, the most glaring public policy failure in the healthcare field today is our unwillingness to define what’s in and out of the medicare basket of services. I think we owe it to ourselves to do that, and it doesn’t have to be a set list. It can be a way of determining criteria, but we have to set those limits. Patients want to know them and they should know them. Instead, what we do is we perpetuate the fiction that there are no limits, and that’s why our spending is not controlled in any honest way. And that’s, I think, dishonest and counterproductive.

How am I doing for time? I’m okay. Yesterday I was at the University of Ottawa. I was at a forum for new medical students. I go and speak to the new university students. I was in this very lecture hall with the U of T students last week, yesterday U of O. It’s always fun to meet the green-behind-the-ears, up-and-coming students. They all think they’re going to be wonderful and they’re never going to be cynical like you guys and me. I go there and I try and burst their bubble. Anyhow, I was on a panel of people from different backgrounds who were offering up advice to these young people with really dauntingly impressive résumés on how they can be better doctors in the future. So just at the start of their career, trying to get them and say “listen,” put these evil thoughts in their head that there’s more to doctoring than talking to one patient in their room and billing; that it’s much more complex than that. One of my fellow panelists was Yves Brunet. He’s a patient who’s lived 25 years with HIV/AIDS – more than half his life – and he offered up what I thought was the most important advice of the day to these would-be doctors, and I want to read you a quote from him. He said, “Look me in the eyes. Look every patient in the eyes and tell them the truth. Do it honestly and do it compassionately.” And I thought in those two sentences, Mr. Brunet summed up all the advice you really need to deliver for patient-centred care. That’s what it’s about; it’s about looking people in the eyes and telling them the truth – even when it’s uncomfortable, even when it’s difficult. Listening to people matters too. Mr. Brunet had a wonderful expression. He said, “Grow a third ear. You can never listen enough to the patient. If they’re in a profession where they interrupt people after 25 seconds, they need maybe four ears – maybe not just three.” So listening to people matters, and it matters a lot to them, especially when they’re scared and they’re sick and their families are frightened. They don’t know how they’re going to pay for their cancer drug – that’s all very frightening. They need to be listened to.

Care that’s not centred around the patient and the family cannot be technically efficient. It can be technically efficient and it can be medically effective, but it will never be good care. We have to go beyond the technical aspect; the humanity of the care matters. To provide good care you have to do a lot more than treat a condition. You have to treat a person – the whole person – and sometimes you have to treat their family too. Patients are not just vessels for a disease or a health condition. They’re not just billing numbers or cost centres. Patients are physical, emotional and spiritual beings, and for all the good and bad that implies. They’re not always easy. You have to treat them in the context of their lives. You have to take into account their support system or lack thereof, their family, their income and so on. Those measures will tell you as much about a person’s health as their blood pressure or their blood gases. They’re vital measures, and we don’t do those vital measures enough in our system. We’re too technical.

Every health problem a person has, every encounter they have with the health system, is a journey. Now that’s a cliché, but there’s often some truth to clichés. Right now, we pay attention to only a little part of that journey. Generally the part people spend in a doctor’s office or in a hospital bed – it’s all institutional. We focus too much on the institution. The journey, no matter how long or how short, often seems disjointed to patients. There’s all kinds of silos within our health system, and even more when you try to connect with other systems like social services or housing or education. Things that are really… get people healthy and keep them healthy.

There’s a horrible disconnect between hope, health and social services that results in a lot of waste of health dollars. Now, that may be a subject for another day. We could talk about that for a long time, but I want to put it out there – health does not work in isolation, and people’s health is not strictly about providing sickness care. It’s about engaging people more broadly as citizens, not just as patients.

Now I’ve spoken today about the importance of giving patients a voice, and I don’t want you to think it’s sufficient to have a single organization, say an Ontario Patient Association or something similar. That’s not what I’m talking about. That would be a start. High-profile advocates who stage press conferences and publish reports can play an important role, but they’re only a small part of what’s required. People need, in the jargon of the social sciences, multiple platforms. They need to be able to tell their stories all along the journey. That’s so important to express yourself, to be heard and to be listened to. Patients need to be able to speak to their front-line healthcare provider, but nurses and doctors are so busy they have seemingly no time for those conversations anymore. Healthcare is suffering as a result.

Patients also need to get their views heard up the chain of command; to be able to express their dissatisfaction and yes, their satisfaction – because there’s a lot of that too – to administrators and ministry officials, policy makers and politicians.

To me, without good communication, we can’t have good healthcare. I think it’s an essential component. Feedback needs to be an integral part of delivering care as well. There needs to be follow-up, not just treatment. I know there’s a lot of patient satisfaction stuff going on, particularly in this province. That’s not too bad; that’s a good start, but a lot of it strikes me as formulaic – a lot of pre-set questions that generate predictable answers. Maybe that’s a bit too critical of your feedback surveys, but that’s again my impression of them.

Be a little braver and a little bolder. Ask patients and their families about the journey, and let them tell you how to improve it. Ask them some open-ended questions. That’s when you get interesting stories. Some institutions are implementing storytelling initiatives, and those are great. I applaud those. I think they’re an important initiative, but again these have to be more than corporate arts-and-crafts projects – they have to be real, they have to have meaning. While letting patients tell their stories is important, listening to them is more important still, and while talking and listening is all well and good, there’s no point to the exercise if we don’t act on what we learn.

The key to patient-centred care is better communication. It requires a dialogue, not monologues in parallel, which is what I think we have now. Communication needs to be an integral part of patient care, not an afterthought or a bureaucratic task to check off the list. There needs to be, in my view, patient and family representatives within the system and there are some – patient advocates and family advisory councils and the like. But again, this can’t just be tokenism; they have to have a real voice, and they have to have real power. In our health system we’re all for giving patients and families a voice, but we rarely give them any real power. It’s a little scary. We need to do more than talk about patient-centred care; we need to live it.

And I’ll wrap up there, and if you have any questions, I’d be happy to answer them. Thank you.


[End of recording]

© Copyright 2009 Longwoods Publishing Corporation and André Picard. All Rights Reserved.

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