Susan is a seventy-five-year-old widow who lives alone in a medium-sized community in Saskatchewan. Her kids moved to the big city for work, so she’s on her own, but she has lots of friends in the neighbourhood and an active social life. As each decade has passed, she seems to have accumulated another diagnosis: diabetes in her late fifties, lung disease in her mid-sixties from smoking in her youth, a heart attack at the age of seventy-two followed by bypass surgery, and osteoporosis on her seventy-fourth birthday. Like so many of my own patients, Susan takes eight different medications, sees three different specialists, and needs to be on top of many elements of her own care. She does pretty well, and she never misses her bridge game on Tuesdays. Her neighbours help her with gardening in the summer and snow shovelling in the winter.
It’s winter now, and Susan gets a cold. She feels very unwell, and is having a hard time eating and drinking. After a few days she starts to feel weak, so she decides to see her family doctor. He is away in Florida for two weeks. The message on the answering machine says that if she can’t wait for his return, she should go to the local emergency department. Two days later, feeling increasingly terrible, she goes to the ED, and is admitted to hospital because she’s dehydrated.
While in hospital, Susan has trouble sleeping in a strange hospital bed. She’s prescribed a sleeping pill by the busy doctor on call. She becomes confused and groggy due to the pill, and when she gets up in the middle of the night to pee, she falls and breaks her hip. Two days later she has surgery to fix her hip. Post-operatively, her blood pressure is low, so the doctor stops her blood pressure medications. She leaves the hospital without a prescription for those medications, and so doesn’t restart them.
A week after coming home from hospital, Susan sees her family doctor, who has no idea what happened to her in the hospital. (He’ll probably receive a discharge summary by snail mail from the hospital in a few weeks’ time.) But he does notice that her blood pressure is high despite the medications he was prescribing—he doesn’t realize that these were stopped in the hospital. So, after ordering a bunch of heart tests that were already done last week when she was an inpatient, he refers her to a cardiologist.
The wait time for the cardiologist is three weeks. In the interim, Susan has a second heart attack and returns to the hospital. Her heart has been damaged from the heart attacks: it can’t pump effectively, so her lungs fill up with fluid, causing her to have trouble breathing when she does even the most basic household tasks. This is known as congestive heart failure. When she’s admitted to hospital again for her shortness of breath, her kids decide to put her on a list for long-term care because she’s not able to manage at home any longer. But there are no beds available in long-term care, so she stays in a hospital ward, waiting and becoming less and less functional and more and more dependent.
After many weeks, Susan gets a spot in a long-term care home. Her heart deteriorates during the next year. Whenever she becomes very short of breath she’s transferred to the hospital via ambulance. She’s admitted every time and treated for a few days until her shortness of breath improves enough that she can be sent back. While in hospital she’s asked a few times whether she wants “heroic measures” if her heart gives out, and she says no. But when it becomes very hard for her to breathe one night in hospital, her children ask the team to intervene. Susan is hooked up to a breathing machine. She dies in the intensive care unit following a three-week stay.
Any doctor will be nodding his head as he reads Susan’s story. Even as our patients struggle with wait times in parts of our system and we worry about system sustainability, we also see enormous waste of resources, duplication, and inefficiency throughout the system. Conventional wisdom has held that wait times can be reduced with more resources: more doctors, more operating room time, more equipment. That’s not what Susan needed. She needed help managing her health problems at home; she needed prompt access to primary care; she needed better communication between the hospital and her family doctor; she needed support to manage the entirely predictable exacerbations of her chronic illness without having to go to the hospital. Susan didn’t need more health care—in the end she got more health care than most of us would ever want. She needed better health care, and she needed clear goals so that the care could be matched to those goals.
Susan’s story is not uniquely Canadian. It isn’t caused by the publicly funded nature of doctor and hospital care in Canada. And we are increasingly recognizing that it isn’t caused by a lack of resources. In most parts of our health care system, we don’t need more money, more doctors, or more fancy machines. What we need is to better organize the resources we have.
Money is becoming scarcer in health care. That scarcity may not necessarily be a bad thing. As Ontario’s former deputy health minister Michael Decter has said, infusions of money into the Canadian health care system often haven’t bought the kind of change we need. Instead, more money has tended to buy “either more of the same or actually the same with higher pay attached.” Across the developed world, health care costs have been consistently rising over the last many decades. You might reasonably assume that as our health care spending increases, our health improves and we live longer. But it isn’t how much you spend that matters, it’s how well you spend what you have.
In countries that spend very little on health care, small investments can make a big difference in life expectancy. But beyond a certain point, spending on health care clearly doesn’t lead to longer life for a population. Improvements for dollars invested are rapid until about US$2000 in spending per capita. Beyond this amount, additional gains are much more gradual and not as closely correlated with actual expenditures. This is especially clear when we see countries like Canada spending just over CAD$6000 per capita every year on health care. The U.S. spends almost twice as much by comparison (factoring in purchasing power parity) for nearly three fewer years of average life expectancy.
If we’ve reached the point where additional investments aren’t helping us live longer or may actually be harming us, as they did in Susan’s case, we need to reconsider. That’s why the Big Idea in this section is to do more with less. We need to seek health care improvements that give us better value for money, by reorganizing the way we deliver care.
Of course, we don’t just spend money on health care to extend life. We want better quality of life, relief of symptoms, rapid access, and many more outcomes that can’t be measured in decades or even months. And when wait times are long or care seems inadequate, it’s a natural reaction to think that more resources are the solution. Too long to see a doctor? Add more doctors! Too long to get a scan? Add more machines!
Those measures don’t solve the problem—because the problems lie in the design of the system itself.
Let’s take the movement to reduce wait times as an example. In 2004, as part of the Health Accord, the premiers and the prime minister vowed to “fix medicare for a generation,” in part by addressing long wait times in five priority areas: cancer care, cardiac care, knee and hip replacements, cataract surgery, and advanced imaging (CT and MRI).
A great deal of money was invested across the country. Surgical-care wait times for many procedures improved, but the wait times for CT and MRI stayed the same—and even increased in some parts of the country. Why?
Surgery wait times were reduced when, along with the extra money invested, the care was reorganized. Interprofessional teams were introduced, new ways of managing queues were put in place, and checklists were applied to ensure that everyone waiting for a procedure was actually an appropriate candidate for it.
But in the case of CT and MRI scans, mostly what we did was buy more machines and run them longer through the day and night. In fact, in 2009, Canadians received over four million CT scans and 1.4 million MRI scans—a 58 percent and a 100 percent increase, respectively, from pre—Health Accord numbers. This brought us close to the OECD average in number of CT and MRI scans per capita—less than France, but more than Denmark or the Netherlands. Yet wait times are still a challenge in some regions, particularly for MRIs. In 2015, the Wait Time Alliance reported that less than half of the populations of P.E.I. and Alberta had access to non-urgent MRI scans in under eight weeks.
Lots of money didn’t solve our wait-time problem. There was, no doubt, a big backlog of cases. But that’s not the whole story. A study commissioned by the Government of Saskatchewan around the time the Health Accord was being negotiated found that at least 30 percent and up to 50 percent of imaging exams were performed for reasons not based on sound evidence. The report concluded that a very substantial proportion of the imaging being done in the province wasn’t worth the cost or the increase in patient exposure to radiation.
Simply upping the number of machines doesn’t guarantee a wait-time reduction. It may just increase the number of inappropriate tests being done, and it certainly won’t lead to a reduction in waste. And reducing the volume doesn’t necessarily mean that we’ll reduce only the inappropriate tests—restricting volumes can also reduce access to much-needed services.
Unless we reorganize care and make better decisions—ensuring that only those who really would benefit from a scan are on the list and centralizing access to the available resources so that the queue is organized—the demand will just rise to meet the supply.
Local culture and variety are good if you’re interested in the arts scene in a neighbourhood. But if you’re having surgery, you want to know that your procedure will be performed in a way that adheres to evidence and standards, not the preferences of the team that happens to be operating that day. One of the major reasons why reorganization of care is so important is that it can help us address the issue of variation. Like many Canadian families, my family has experienced the reality of care variation first-hand.
When my father-in-law, Murray, was diagnosed with dementia, we were all sad, but none of us was surprised. His three sisters had suffered with the same disease, and we’d seen early signs for quite some time. What followed was an extremely difficult time for my mother-in-law, who kept him at home as long as she could. Eventually, it became too much for her. Murray had become aggressive, yelling at her and behaving unpredictably. He’d pace the halls in the middle of the night, interrupting her sleep. He’d become confused and paranoid, thinking she was a stranger and demanding over and over to see his wife. I still remember listening to my partner, Steven, on the phone with his dad, assuring him over and over that the woman he was with was indeed his wife of fifty years, not an imposter. Steven’s mother had to grapple with the question of whether she was comfortable having her husband take antipsychotic medication to try to control his behaviour. Eventually, the difficult decision was made to move Murray into a facility, where the same question arose.
The use of antipsychotic medications for residents of long-term care is controversial, and a striking example of variation in care. For some residents, these medicines may help manage the behavioural symptoms of dementia, such as agitation and aggression. But they often have side effects including sleepiness, a risk of falls, and even an increased risk of death. It’s hard for family members of people in long-term care homes to see their loved ones having a difficult time communicating or being sedated during the day. There are other ways to control aggressive behaviour, but they can be challenging to implement and require high levels of staffing, training, and commitment on the part of the leadership and staff of long-term care facilities. Sadly, drugs are easier and less expensive.
In some long-term care homes in Ontario today, the proportion of residents over age sixty-five being prescribed antipsychotic medications is zero. In others, it’s more than two-thirds. Some of that variation could be due to differences in patient populations, but not all of it.
My mother-in-law decided that it would be better for Murray, and his caregivers, if he took the antipsychotic medication. For him, that was the right decision. But the nature of the conversation, the way the options were presented to her, and how much power she felt she held would probably have differed in every long-term care facility across the country.
There are many other examples of care variations in Canada. For example, survival after stroke varies substantially from province to province, depending on whether the province has adopted evidence-based systems of care.
People with diabetes who live in northern or rural areas are more likely to experience such complications as kidney failure and blindness than are people who live in urban areas. Women with invasive breast cancer in Newfoundland are nearly three times more likely to have a mastectomy than women in Quebec with the same diagnosis. The likelihood that women will have a hysterectomy also varies significantly depending on where they live. The list goes on.
Of course, variations in care might be understandable in cases where we don’t know what the best practice is, or where particular populations have different preferences or values regarding the care they receive. But too often, that’s not the case. We know what “best practice” looks like for a wide range of cancers, heart disease, stroke, diabetes, and a host of other health issues. Yet we apply that knowledge inconsistently. This isn’t usually due to an under-resourcing of the health care system. Instead it’s about care that is poorly organized and delivered. Canada has been called a “nation of pilot projects” because we have difficulty moving from the trial stage to the permanent change, from the local example to the system-wide difference.
Variations in care matter. If doing things differently saves lives or money or both, we should work to reduce variation. This requires us to understand who the big users of the system are, what drives their experience of it, and where the costs reside.
A principle of service in any industry is to understand who your customers are. If you work for a company that makes yachts, you probably don’t need to do much research into the needs of low-income people who live in land-locked regions. Health care is no different: while the system should meet the needs of every Canadian, it helps to understand the needs of the people who use the system most.
Canada looks very different today than it did in the mid-1990s; in the coming decades it will look different still. According to current projections, by 2041 nearly one-quarter of our country’s population will be over sixty-five. This shift isn’t the same across the country: because birth and immigration rates differ among communities, some provinces are aging faster or more dramatically than others. For example, in 2015, seniors represented 19 percent of the population of Nova Scotia but only 12 percent of the population of Alberta.
Aging alone won’t bankrupt the health care system. But as people age and live longer with multiple chronic diseases, we do need to design services differently. Susan’s story illustrates this need perfectly. In her case, poor communication between different parts of the health care system, an overreliance on hospital care, and the lack of a treatment plan for her chronic health conditions left her with lots of health care but not much health. Only one in four Canadian seniors with a chronic condition reports having received help with creating a general treatment plan. No wonder people end up cycling in and out of emergency departments.
A physician friend shared a story with me about his aunt, who’s in her eighties and recently had a knee replacement. When he asked her about her experience, she responded that the hardest part was the unexpected pain she was experiencing as part of her recovery. “Didn’t they warn you that it would hurt afterward?” he asked. “I guess so,” she said, “but it didn’t really hurt before the surgery.”
My friend was dumbfounded. “If you didn’t have any pain before your knee replacement, why did you have the surgery?” he asked.
“Because they told me I needed to,” she responded.
On further questioning, my friend learned that his aunt had seen her family doctor about the knee discomfort she felt when she walked around or got down on the floor to pray. The family doctor had advised her to take Tylenol, which worked quite well; it allowed her to carry out her daily activities and do all the things she wanted to do (in some cases with a few modifications, such as sitting on a chair rather than on the floor to pray). But the family doctor had also referred her to a specialist, and when X-rays confirmed that the severe arthritis in her knees made her a candidate for a knee replacement, she was put on a wait list for surgery.
At the end of it all, she had a new knee. But it turns out that she’d been doing just fine with the old knee. She hadn’t understood—and this wasn’t her fault—that the point of a knee replacement is to reduce a person’s pain so that they can function.
Stories like this carry a sobering message as we look toward an increasing proportion of seniors in Canada. It’s wonderful that an overwhelming 97 percent of Canadian seniors say that they’re satisfied or very satisfied with life. They also rate their health highly in terms of their ability to function: when it comes to their vision, hearing, speech, mobility, dexterity, feelings, cognition, and pain, most don’t feel that they often have difficulties with activities. So rather than just throwing more (and more expensive) care at seniors, we need to learn to provide them with the care they need to function well and enjoy their lives.
Age is an important factor in health care use, but it’s not the only factor. The health needs of people from different genetic backgrounds can vary widely, and as the source countries for immigration to Canada continue to shift, we have to pay attention to what this means for the system overall. For example, between 2002 and 2011, the highest numbers of new Canadians came from the Philippines, China, and India—and heart disease, high blood pressure, and diabetes are important risks for these populations.
This is not to say that Asian Canadian immigrants use more health care than other groups. In fact, when they arrive in Canada, first-generation immigrant adults are generally healthier than Canadian-born adults. It’s just that their particular care needs may be different. If a hospital or a primary care group serves high numbers of new Canadians, providers will begin to see corresponding patterns in health care use that reflect the particular needs of those groups. We need to be able to respond to those kinds of shifts by reorganizing our resources.
Aging and the changing source countries for immigration are two factors that help us to understand the needs of health system users. Another is increased use of technology.
“Oh, the internet? Is that thing still around?” I like to joke about my technophobic side when someone else has to back up my phone for me. With virtual culture on the rise in every industry in our economy, it shouldn’t surprise anyone that Dr. Google has replaced a call to someone like me as the first reaction to a colourful rash, lump in the groin, or cancer scare. Moreover, as Dr. Eric Topol, author of the terrific book The Patient Will See You Now, has observed, “Instead of just looking up symptoms, as has been the case with the Internet [for] over 20 years, we’re about to move into an era when people will also have objective data (through sensors, labs, imaging, genome sequence) that will empower them to be highly active participants in their diagnosis and care.”
Patients want to be treated not as passive recipients of care, but as true partners whose time and input is just as valuable as their doctors’. They want convenience: care close to home, available 24/7 and by email or telephone. They want to be seen in a reasonable time frame, and barring exceptional circumstances, they want to be seen at the time of their appointment. They want to be “e-patients,” a term coined by a patient advocate who calls himself e-Patient Dave: empowered, engaged, equipped, and enabled. Dave began blogging about his experiences in the American health care system when he was in treatment for metastatic kidney cancer. He’s since become a full-time activist, advocating for greater involvement of patients in their own care and for personal health-data rights. His book Let Patients Help! is a manifesto for participatory medicine.
The importance of health literacy—people setting and participating in achieving the goals of their own care—cannot be overstated. What is the value of giving people treatment plans if they don’t know how to use them or the plans don’t work in the context of their lives? The digital revolution has helped people learn about their health and has the potential to help them make decisions more effectively with their doctors.
E-Patient Dave predicts that it will take only about a generation to completely arrive at a new reality in the e-patient movement. From genetic tests that help us understand how our DNA influences our health risks to the uptake of wearable devices that measure the number of steps we take each day, technology continually brings new opportunities to understand and interpret our health. Still, how much this “quantified self” will actually improve health outcomes is unclear to me. In some areas it may give us more data than we have the wisdom to deal with—and if we’re not thoughtful about its application, it could lead to unnecessary treatments, not to mention privacy risks. But people are turning to these technologies as a way of increasing their engagement with their health, and that’s an interest that should be respected. In the information age, appropriate use of less expensive and more empowering self-care of all kinds will take its rightful place in the spectrum of health care.
Not every aspect of improving the patient experience needs to revolve around fancy technology. Health care remains a human industry, where the little things make a big difference to people’s experience. Cleanliness of waiting areas. Being looked in the eye. Having people explain what they’re doing and answer questions. Being given enough time with a health provider. As we strive to reorganize care delivery, we’ll see increasing standardization of the processes that drive care, but care that’s standardized doesn’t have to be impersonal.
The imperative to do more with less is not about reducing health care staff or making their work more precarious. Too often, attempts to reorganize care have made things worse for those who are already the lowest paid and have the worst working conditions. Instead, by engaging everyone—from the staff who clean the floors and serve the food to the hospital CEO—in improving the way we organize care, we can do better for patients without putting our health care workers at risk.
Something as simple as a chair can make a big difference. One patient group, Patients Canada, found that many hospital emergency rooms had chairs for the patient and triage nurse, but no third chair for the family member or friend who often brought the patient to the hospital and knew important information that could be of use to the care team. A place for the family member would not only benefit the patient; it would also help triage nurses gain more insight into the patient as they decided on next steps. More hospitals are now placing that third chair in the triage area of their EDs. Simple, concrete things like this show a willingness to do better.
A system that serves the needs of older and more empowered patients would be terrific. It also has to be affordable. So if we want to reduce costs or hold them constant, we need to understand where our health care dollars go—and it turns out that our spending is concentrated among a small group of people who use the system heavily. In Manitoba, for example, 1 percent of the province’s health care users account for 35 percent of spending on health care, including drugs, physicians, and hospitals.
This isn’t just a Canadian phenomenon. It’s also true in the United States and elsewhere. We call these people “high needs, high cost” users of health care, and they’re the topic of much discussion at health care conferences and in government offices.
What makes someone become a “high cost” user of health care services? Imagine that you experienced a catastrophic event, like a cancer diagnosis, or a major car crash, or the birth of a preterm baby. You’d suddenly need a lot of health care.
Many of those who make up that 1 percent use the system intensively for a brief period, then either they get better and return to a lower level of spending or they die. Of the top health care users in Ontario, only 45 percent remained in that category after the first year, and only 33 percent remained after three years.
It’s that 30 percent—people whose high-intensity needs are chronic—who strain the system most. Some don’t have a clear diagnosis and are being extensively “worked up,” undergoing lots of tests and investigations and specialist appointments. Others are living with mental health problems or addictions that make it hard for them to follow through with treatment recommendations. Still others are frail, medically complex, or have a severe, relapsing condition. When they experience exacerbations of their heart failure, or chronic lung disease, or kidney disease, they’re admitted to hospital, tuned up, and then discharged home again, only to be readmitted months, weeks, or even days later. In Canada, one in every twelve hospitalized patients is readmitted within thirty days. (And in the U.S., it’s one in eight.)
These are people like Susan.
Too often we see patients like Susan cycling in and out of the emergency department or the inpatient hospital simply because their underlying issues are never fully addressed and they have nowhere else to go. They spend hours, days, or weeks waiting to be seen by health care providers and have to retell their stories over and over again. They pick up infections and experience complications from the care they receive. And when they get to the end of life, we throw increasing amounts of resources at them instead of helping them die in a dignified way.
Ask any doctor you know where they want to die. I’d bet they’ll answer “Not in the ICU, with tubes down my throat and a team pumping on my chest.” Most of us who’ve witnessed the inhumanity of futile medical care—which is everyone who works in the field—want nothing to do with it for ourselves or for our loved ones. Did Susan want it? Did we ask her?
We need to focus on people like Susan—older people with multiple chronic conditions, including at the end of life. If we can improve their health, give them a better experience of care, and control the costs they generate in the system—the Triple Aim—we’ll be doing more with less.