Six years after she had surgery to repair a broken femur, Emily Nicholas Angl developed pain in her hip that became so debilitating it left her keeling over on the sidewalk.
A CT scan suggested a problem with the bone in her hip. She was scheduled for an MRI to determine the extent of the bone’s deterioration, but first had to undergo surgery to remove the metal pins left in her leg.
She was 28 and almost entirely immobilized. She couldn’t go to school or work, and her mother had to move in to help care for her.
While Nicholas Angl waited, she wondered, how long would she have to wait before life returned to normal? And would it ever be normal again?
It was 2010, six years after the 2004 Health Accord challenged provinces to reduce health system wait times in five key areas: cardiac care, cancer care, diagnostic imaging, cataract surgery and hip and knee surgeries.
Yet despite the political pressure to find ways to speed surgical wait times, Nicholas Angl waited three months after her MRI scan to have hip replacement surgery, even after being classified an urgent priority and placed on an emergency wait list.
“It’s still amazing to me that I was considered an emergency but waited that long. I thought it would maybe be a few weeks,” she says.
While the Health Accord was successful in bringing the focus to wait times – since 2004, provincial and national wait time targets have been set for 16 specialties, representing more than 1,000 procedures, tests and consultations – the setting of these targets was largely based on scientific evidence and literature searches. Unlike other areas of health policy, patients were not part of the discussion.
“Patients have not been involved as much as they should,” says Chris Simpson, a Kingston-based cardiologist and former head of the now-defunct Wait Time Alliance, a physician group formed in 2004 to monitor and report on wait times across the country.
“It was a different time,” says Cathy Cattaruzza, the former Access to Care director at Cancer Care Ontario. “It’s only in the last four or five years that patients have finally gotten an appropriate voice to influence policy.”
Yet as Nicholas Angl points out, for patients the targets can be difficult to understand. Is the target an ideal? An expectation? An average? Or a calculation based on how the system currently works?
“I think this is why wait time targets don’t tend to resonate for patients,” says Nicholas Angl, who has acted as a patient advisor to the Canadian Institutes of Health Information and Health Quality Ontario, among other organizations. “Targets have never been very friendly in their reporting, let alone in having patients involved in the devising of them.”
Reflecting the realities of waiting
Some patients would prefer to see wait time targets that incorporate more than just scientific evidence – they want targets that factor in what it’s actually like to wait.
“The experience of waiting can be one of the most difficult of the health care journey – and often forgotten because we’re not in the institution and not in any measurable part of the system,” Nicholas Angl says. “You sort of feel neglected. You’re in pain, and it’s only you who has to deal with it.”
The whole system of wait time measurement may have been set up differently had patients been involved, says Alan Hudson, a neurosurgeon and the former lead of Ontario’s Wait Time Strategy. The glaring media spotlight on the issue meant most provinces began in 2004 with what could be measured, not necessarily what should be measured.
“From a patient’s point of view, there are many other wait times – waiting for an MRI, waiting for test results. From a patient’s point of view, it’s the whole continuum. All these other wait times should be considered,” Hudson says.
“Anxiety is a hugely important factor,” he adds. “We’re supposed to be looking after the patient and if the patient’s anxious, it means they’re not functioning normally. You can’t just ignore it.”
Waiting for specialist care, diagnosis or treatment
For Linda Wilhelm, President of the Canadian Arthritis Patient Alliance and a member of the Best Medicines Coalition, waiting for her family doctor to refer her to a specialist, and then waiting for a specialist to confirm a diagnosis of rheumatoid arthritis cost her the opportunity to start treatment early, which could have slowed the progression of her disease.
For Cathie Hofstetter, chair of the Patient Advisory Committee at the Ontario Best Practices Research Initiative and a patient representative on the Ontario Rheumatology Association’s “Models of Care” Committee, waiting for paperwork to be approved to access biologic treatment needlessly left her in debilitating pain.
“When you’re diagnosed with something like rheumatoid arthritis, the main thing is the unbelievable, unbearable pain,” she says. “When they told me that I’d have to wait two or three months, I was just about ready to climb to the roof and jump off. I kept saying somebody’s got to do something for me now! Somebody’s got to help me deal with the pain, please!”
At the time wait time targets were being formulated, neither access to specialists nor access to medications were being tracked. In most provinces, and with many specialties, they still aren’t being captured today.
“What has to enter into it is the concept of what it’s like to be a person who is waiting,” Nicholas Angl says. “If you’re talking about creating a patient-centred system, then what has to enter into it is how it feels to be that person in that situation beyond just a very broad priority level. We have to consider the different types of experiences of different types of waits.”
Marrying evidence with patient experience
Wait times target were initially set in one of two ways, Simpson says. They were either influenced by evidence or set by government.
Both Hudson and Simpson remember the literature being sparse when it came to pinpointing the precise time at which waiting any longer for treatment could cause harm. Think about cataract removal, Hudson says. There is little evidence that waiting has any impact on the surgery’s success. Simpson, meanwhile, points to the “clinically ridiculous” six month wait initially set by provincial governments as appropriate for cardiac surgeries.
It can be a challenge for those who set, monitor and report on wait times to incorporate the softer aspects of patient experience into a process that was designed to rely on hard evidence. That’s why most agree they should go hand-in-hand, each reinforcing the other.
“A patient story is a different way of presenting data,” says Annette McKinnon, a member of the newly-established Patient Advisors Network.
“Even those who bring a scientific lens to this, they’re still motivated and inspired and critically informed by the narratives that go along with it,” Simpson agrees. “The data we get, they just don’t bring the issues to life in human terms as a patient’s narrative can.”
Setting system targets that meet patient expectations
The arthritis community may offer a model to follow.
Two years before wait times became a hot-button topic, the Canadian Arthritis Patient Alliance developed a Bill of Rights suggesting patients had a right to see a rheumatologist within six weeks of the suspicion of arthritis.
At the time, rheumatologists pushed back. They knew there was no way their practices could handle the demand – their wait lists already stretched six months or more.
“Although it was a great idea, it’s the kind of thing you’ve got to push to the high-level decision makers,” says Claire Bombardier, a rheumatologist at Mount Sinai Hospital and University Health Network, who was leading the development of guidelines for the Canadian Rheumatology Association. “Just saying this is the target and putting it in the doctor’s office is not going to do anything.”
Yet the guidelines eventually set were even more aggressive, pushing for only four weeks to diagnosis for rheumatoid arthritis, the most severe type.
That’s because the evidence about the effect of waiting – poorer outcomes and greater risk for disability – was starting to come in. Biologic drugs had come on to the market and had been found to halt the disease.
“Rheumatologists realized they really needed to shorten it up,” Hofstetter said.
To help meet the target, a pilot project was recently set up in Ontario incorporating physiotherapists with advanced training into rheumatologists’ offices to help triage referrals. Initial results – which Bombardier will present this month at the annual American Rheumatology Association conference – show average wait times to a diagnosis at the pilot sites plummeted from three to four months to only three weeks.
Willing to wait
Bombardier says results of the pilot show patients who were not assessed to be high priority did not mind waiting to see the specialist while other more urgent cases moved ahead: they felt their worries and concerns were being addressed by the therapist, who could give advice on exercise and other tactics to manage their pain until they did see the specialist.
That may seem counter intuitive, but those involved in both setting wait times and advocating for patient care say Canadians seem willing to wait – so long as urgent cases have a way to float to the top of the list and no one is left feeling forgotten.
“I really find that patients are extremely patient – they accept that there’s a time element to getting stuff done, particularly in complex diagnoses and therapy pathways, where there are lots of different tests in lots of different locations. They have a lot of tolerance for that,” Simpson says. “As long as they feel there’s coordination to the whole thing, and know it’s safe and isn’t putting them at risk.”
“I think it’s something that is uniquely Canadian,” says Wilhelm. “I’ve seen it time and time and time again. Patients are willing to wait – depending on how bad they are.”
The comments section is closed.
The wait times for a hip replacement in Nova Scotia is way above the 6 month mark. For the surgeon I have been referred to in Halifax, it is 3 years. I have been waiting close to 2 years and being told I have another year to wait. It all depends on the surgeon you get referred to and the area you live in. This wait did not include the time it took to get a GP as my had retired or the cat scan and MRI and rheumatology wait. My life has been put on hold.
Tight gatekeeping is in fact a method of health care rationing. It produces long wait lists to avoid flooding health services with treatment needs that cannot be met, due to shortage of facilities and health care professionals. I submit that gatekeeping adversely impacts individual and population health in this country. Long restrictive waitlists must be removed. The practice of physician gatekeeping must be re-designed as an appropriate triage protocol rather than a strategy to restrict access and withhold treatment.
The more sinister effect of gatekeeping policy is how it affects physician attitudes and patients’ self perceptions. It also affects what kind of research is undertaken, funded and applied in the field. Waitlisted patients, and those waiting for the waitlist, are identified by their own doctors as not needing or deserving remedial care. Patients begin to self identify as not ill enough or not disabled enough to require active treatment. That is one reason why patients don’t complain.
A patient’s illness, pain and suffering is often misconstrued as primarily somatic or interpersonal leading to inappropriate treatments that could even exacerbate their condition, such as prescribing major tranquilizers to treat pain, instead of restorative surgery. With their gatekeeper hat on, doctors often make recommendations that patients cannot afford or that don’t match their stage of illness. I suggest that a few single case studies would support these observations.
I fully support the thrust of this and the “Related Faces of Health Care” articles but the elephant in the room doesn’t even get a mention – the immutable law of supply and demand. We may be able to make modest improvements by better prioritization and improved procedures and systems but until we have a sufficient number of doctors, particularly specialists (where the shortage is most acute) to cope with the needs of the patient population we cannot hope to achieve significant reductions in waiting times.
I believe the evidence to support this view is overwhelming”: recent OECD figures indicate that we have 25% fewer doctors per capita than the average of comparable (European) countries and fewer than any of them; The March 2014 Healthy Debate article “Physician health: reducing stigma and improving care” by Nathan Stall, Jill Konkin and Joshua Tepper reported that “… nearly half … (of Canadian doctors) … are in the advanced stages of burnout …” – clearly indicative of the consequences of this doctor shortage.
Setting unrealistic waiting time targets in this context only adds to the pressure that doctors are under and is counterproductive to improving care. Until we clearly identify the underlying causes of excessive waiting times and take steps to correct the inadequacies, particularly concerning the “supply shortage(s)”, any target-setting is futile.
I should very much like to think that I am wrong in this view but so far this seems to have been a perennial problem which continues to go unaddressed.
I am not a doctor – merely a concerned observer of our healthcare system!
This writer is absolutely correct. Indeed, have patient outcomes even been provincially researched? I suggest that physician gatekeeping, at least in BC, is doing harm. Gatekeeping practices directly violate physician ethics and their college mandate.
I further suggest that gatekeeping is a method of refusing treatment. It is more than triaging. Rather, it is actually withholding and restricting access to remedial care. Physician gatekeeping (ie withholding care) produces long wait lists, contributes to early disability, to prolonged suffering and to chronicity. Without the benefit of stats, I suggest that current policy increases health costs for both the province and for individuals. Many physicians in BC take advantage of this situation, and have set up private practices. They argue that private practice will shorten wait lists for public Medicare. Unfortunately, physicians who enter private practice are not replaced, therefore lengthening wait times in the public sector. They are doing a great disservice to Medicare patients, they are further disabling our once envied health care system. It is galling to me that routine but necessary surgeries can be had within days or weeks from private clinics, while the rest of us wait years for the same operation.
I can see only one solution to this – that patient lobby groups and individual patients need to launch legal appeals to challenge current gatekeeping practices. After 20 years of declining health care, and now at the edge of losing Medicare altogether, it is apparent that strong concerted action is needed to illicit any movement from our Parliaments in this regard.
Margaret deMello MSW
What nonsense. How typical of this website to approach every issue from the health provider’s perspective. “The research says patients are ok with waiting.” No, people are not ok with waiting. I envy Americans that can see specialists and get quality care so quickly and get on with their lives. I notice that family doctors and specialists in this country get paid extraordinary salaries but don’t have very good hours of operation. Monday-Thursday 8am-12pm. Pardon? And there is no coordination between doctors.
People need to have options when they are in pain and their life is on hold, which is why introducing a private option in our system is a good idea. Our system could benefit from a healthy dose of competition.
The issue of having patients, carers at the table when discussing the why, what, how, where, when, how often of “health care” delivery MUST include patients, carers (the receivers) at the discussion table. Their exclusion over the last ’20’ or so number of years in trying to improve the health system is clear EVIDENCE that not all the “right” people have been included in the discussions. Let’s acknowledge/accept that our brightest and best Health Professionals and Managers of the health system (government) are “insufficient representation” to be successful in achieving a quality, cost effective, sustainable health system. The system must be explored from all perspectives. The health system recipients’ perspectives, have to be explored and understood as only they have comprehensive, continuous experiences across the health care system continuum. What’s missing from the discussion table are receivers. They, suffer the consequences, costs, of a poorly co-ordinated, poorly integrated system. These ‘costs’ include physical, mental and emotional pain, not thoroughly “calculated/quantified/measured”. If they were, system suppliers would be able to see that the patient/caregiver/receivers’ costs, are why costs to the health system, the suppliers, government and all taxpayers are unsustainable and lead to crisis. Time for “all” stakeholders to gather round the table, listen for understanding/comprehension/appreciation of all perspectives and work together to fix it. We have the intellectual capital, assets to do this, but only, by full representation and working together. It simpler than rocket science, requiring only a willingness from everyone who is able, to participate.
What is more frustrating to me is how long this conversation has gone on. Twenty years ago I was having this discussion with doctors because my mother had to wait so long for a knee replacement. Fifteen years ago I needed a replacement so badly that I couldn’t walk anymore. The only way I could see the surgeon to talk to him in less than 2 years was to pay, so I did. I was on crutches and was told the soonest surgery date was another 2 years. The day they told me that I cried, then got on the internet and found one of best surgeons in the world who would repair my hip in 7 weeks. I’ve had that hip ever since and it’s still going strong. For the price of used car I regained at least 4 years of ,my life and saved so much other damage I would have done over the 4 years. The waits times are not that long now, but they are still long and I know people who are told 7 months until surgery and 7 months later they are still waiting many more months. I feel like it’s a never ending conversation held mostly between people who haven’t a clue what 24/7 pain and lack of mobility is like. Those people don’t understand that pain can be a severe disability. We truly need more action and less talk, and we really need to talk to the people who are suffering not the theorists.
Exactly!