After Betty Lively was hospitalized with pneumonia in 2016, she told her doctor she didn’t need to see him again. During her admission, she had contracted C-difficile, and nine weeks later she still felt terrible. Lively had already been suffering from chronic obstructive pulmonary disease, a progressive illness that includes bronchitis and emphysema for several years; like most people with COPD, she faced persistent coughing, shortness of breath and fatigue, and frequent infections. Now, at 59, she had to stop working. She had to use an oxygen tank. She was too embarrassed to go grocery shopping and she avoided seeing friends. “I just sat there, like a lump, at home,” she says. “I told my doctor, ‘If I’m going to stay like this, I’d rather be dead.’” That’s when he said, “We’re going to try this.”
By “this” he meant pulmonary rehabilitation, which is considered the standard of care when it comes to treating moderate to severe COPD. A typical program includes supervised exercise and group education over four to 12 weeks; sessions usually last two or three hours and take place a few times a week. Patients usually work with a physiotherapist and either a respiratory therapist or a nurse. They do both cardio and strength-building exercises, and they learn about coping with their disease—everything from how to use their inhalers to relaxation skills to self-managing “exacerbations,” which are flare-ups in symptoms that often land people with COPD in hospital. Numerous studies have shown that pulmonary rehabilitation increases exercise capacity and improves quality of life in people with COPD; the evidence that it works is so strong that a 2015 meta-analysis by Cochrane of 65 randomized control trials comparing PR with conventional care for COPD concluded additional RCTs were “not warranted.”
And yet, only a fraction of Canadians who suffer from COPD access pulmonary rehabilitation. A country-wide survey conducted by the Canadian Thoracic Society in 2015 revealed that PR programs in this country serve about 10,280 patients per year, which amounts to 0.4 percent of Canadians who have COPD, and 0.8 percent of those with moderate to severe cases.
Why is this number so low? For one thing, COPD itself “doesn’t fly high on the radar” of many health care professionals, says Roger Goldstein, a specialist in respiratory medicine at West Park Health Centre in Toronto. Many are similarly unaware of the benefits of rehab programs, he says. Pat Camp, the lead author on the Thoracic Society’s study and associate professor at the University of British Columbia, agrees. “It hasn’t really gotten the same kind of exposure as say, cardiac rehab,” she says. “Something like 35 percent of patients with a cardiac problem have access to a program. That’s many, many, many times higher than people with pulmonary disease.” She notes that cardiac rehab often starts right in the hospital on the heels of a catastrophic event, like a heart attack or a bypass. And while exacerbations can be deadly, Camp wonders if health care providers see the deterioration in COPD patients as a “natural part of the condition, and don’t think there’s anything that could potentially reduce that impact.”
Patients have their doubts, too. “So many patients I recommend this to say, ‘No, not right now, I’m too tired, I need to recover more,’” says Alan Kaplan, a family physician in York region in Ontario who has expertise in COPD treatment. He points to other barriers. “Distance can be an issue, and paying to get somewhere. I can understand when you’re feeling tired and short of breath, you wouldn’t want to get on a bus, or take two buses to get somewhere. That’s pretty daunting.”
Then there’s the issue of capacity. The Thoracic Society’s study identified 155 programs across Canada in 2015—“not enough by far to cover the needs of potentially one million people,” says Camp. Many of the rehab programs were quite small, treating just 50 people a year. The majority were offered in hospitals (60 percent) and public health units (24 percent). Geographically, they tended to cluster along the Canada-U.S. border, with more even distribution throughout Alberta and Saskatchewan. Only eight percent of programs were available in community-based recreation centres.
“This is really an access-to-care issue,” says Ian Fraser, a respirologist and the chief of staff at Michael Garron Hospital in Toronto. “If you’re poor and you have to work, or you have to pay for transportation to a facility-based program, it’s almost impossible. The evidence now suggests that you can get equivalent outcomes with home-based or community-based programs, but there isn’t a uniform funding model. Various LHINs [Ontario’s regional health care agencies] may have decided this is a priority and put money in it, but it’s not uniform.”
Fraser thinks this lack of investment may go back to COPD’s “perceived lower profile.” “It’s not seen as being as important,” he says. “People have a bit of a cough and phlegm; it really isn’t a burden.” In fact, COPD is the fourth-leading cause of death in the world. Thirteen percent of Canadians aged 35 to 79, had a “measured airflow obstruction consistent with COPD” between 2009 and 2011, according to Statistics Canada; COPD was responsible for 4.4 percent of all deaths in Canada in 2011. Its prevalence is increasing; a 2017 study out of the Institute for Clinical Evaluative Sciences in Toronto reported that COPD was 37 percent more widespread in 2014–15 than it was in 1996–97. (Incidence and mortality rates, on the other hand were lower.) In the past, there was an idea that COPD was “self-inflicted,” says Fraser, because it’s primarily caused by smoking. But both Fraser and Goldstein think this attitude has receded as we’ve gained a better understanding of how addictive tobacco and nicotine are.
There aren’t many studies exploring whether and how much money pulmonary rehab can save in health spending. A randomized controlled trial out of Wales in 2000 found that “an intensive, multidisciplinary outpatient” program reduced the use of health services in both the short and long term. An RCT conducted in three Quebec cities and published in 2003 reported a 39.8 percent reduction in hospital admissions among patients who received a self-management intervention that involved education through workbooks for COPD patients and telephone support from a trained health care professional. And an extensive evidence-based guideline compiled jointly by the American College of Chest Physicians and the Canadian Thoracic Society in 2015 found that pulmonary rehabilitation was effective in preventing acute exacerbation (and hospitalization) for patients who started a program within four weeks of their most recent exacerbation.
Whatever PR’s potential for recouping health care costs, expanding it would not be expensive, says Goldstein, pointing out that “the biggest need is peripheral.” This could be met, he says, by setting up “satellite” programs in communities an hour’s drive or more from bigger centres where programs like his are based. Staff from the smaller communities—a member of a family health team or even a fitness instructor—could be trained at an established program and then go back and supervise patients in the exercise component of the rehab. The education could happen remotely, with patients in the smaller community tuning in via Skype together with patients at the main location. This model is already in place in Alberta, where a program called Breathe Easy, run by the G.F. MacDonald Centre for Lung Health, reaches between 10 and 15 locations in the province. The main site, in Edmonton, provides pulmonary rehabilitation to roughly 400 patients per year, while the satellite programs are offered to another 150, some in places as far as 500 km away.
To Fraser’s mind, the key to saving money is political will. When the notion of quality-based procedures was introduced in Ontario five years ago, he hoped the shift would involve funding beyond a hospital admission, possibly for up to a year. In fact, he says, it needs to go beyond that. Reinforcement—regular, ongoing exercise, for example—is how the benefits of PR really take hold. Fraser thinks this is best achieved through case management and pulmonary rehabilitation, “which encourages patient self-management and higher quality of life and performance, and decreases acute-care resources.” This, he says, would be “a really good, targeted way to fund pulmonary rehabilitation for a highly responsive group.”
“It takes practice for people to change,” says Fraser. He is part of a group that recently published an RCT on a case-management intervention for people who have COPD and multiple co-morbidities in the European Respiratory Journal, and one thing they discovered was that people needed an average of three flare-ups before they felt confident treating it themselves, without having to see their doctor or go to the emergency department. “There has to be a commitment for a prolonged period of time, a number of years, and then it grows,” he says. “It’s like interest in the bank. The benefit will continue to accrue.”
When Betty Lively entered the seven-week inpatient program at West Park six months ago, she was “terrified” to exercise. On her first day, she did a six-minute walk—a standard baseline exercise—and thought she was dying. But then on her third day, she managed 10 minutes on the treadmill. And then on her fourth, she got rid of her oxygen tank. In her second week, she walked up a flight of stairs, a major breakthrough. “I was so happy, I cried,” she says. Until then, Lively had been avoiding visiting her son at his home; she couldn’t get up the front steps without huffing and puffing.
She continues to work “hard, hard, hard” in the outpatient maintenance program at West Park. And she still has moments of dyspnea. She still works hard to avoid catching colds, which make her symptoms worse. But her “whole life has changed,” she says. “Opening up your lungs and being able to breathe… it’s like chocolate. Like the nicest piece of Laura Secord chocolate.”
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I definitely have to do this…
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I have Copd and cant hardly walk anymore due to lack of oxygen its terrifying living like this. Really need advice as to what I can do. I feel my lifes almost over at 60 yrs of age
Hi Patricia, I work at the Edmonton General & we can try to connect you with a program closer to your home.
Where are this programs located, I have COPD and have very limited breathing, walking a few feet is a real effort anymore. I’m terrified at what’s to come if I dont do something
I was diagnosed with COPD 5 years or so ago. I foolishly smoked for 40 years believing the myth that if you quit, your lungs would recouperate almost fully after 10 years or so. Nobody (including my doctor) ever made me aware of COPD. It was only due to having a potentially cancerous growth diagnosis and subsequent laser surgery that prompted me to quit smoking cold turkey. I used to go to the gym regularly and the smoking never seemed to impede my progress. It’s only the last couple of years that I have found out more regarding CPOD. I had quit the gym due to my new work schedule but recently went back to my 5 to 7 kilometre hikes that I used to enjoy so much. I can still do it but find I have to stop to catch my breath more often than I used to and occasionally use my puffer. I take Trelegy inhaler on a daily basis and my lung capacity has increased from 42 to 51 percent capacity in the last year according to my respirolagist. Although my work schedule limits my ability to go to rehab, I would still be interested in learning more about proper exercises and programs available to me in York Region.
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centres in Edmonton and area?
I was just doing some research related to this and I was told the Edmonton Health Zone offers pulmonary rehabilitation at six sites around the region. Edmonton General Hospital and a primary care network in the region also offer sessions throughout the year. I am not sure of details, but you can try to contact the Edmonton Zone of Alberta Health Services – ask for Allied Health. Good luck!
I think that this is something that would be good for me. Are there any rehab centres in Toronto?
Yes. there is a program at Toronto Western Hospital and at Trillium Health Partners
Hi I Was wondering if,you Know of Any in Southern Alberta?
At your Earliest,Convenience.
I would appreciate having a support group as apparently I’m at the end of Life with COPD I think I could still put up a fight I get a little better if I only had encouragement to do so I’ve been a widow since I was 28 years old with three boys and that was 61 years old my name is Marlene
My boy friend is 46 years old and just got diagnosed with COPD. He is really scared. The dr hasn’t sent him for any test. I am the only REAL support he has. We live I Winnipeg and wound like to have as much info and support as possible. Can someone contact me plz?
I was recently diagnosed with COPD, as I smoked unfortunately. Would love to connect. Maybe grab a coffee I just moved to winnipeg.
One thing that should be encouraged is social interaction among people with COPD. People with COPD need others who understand and live with the disease. I was denied rehab, based on my FV1 and every pulmunologist worth his salt knows that the FV1 is for diagnosis and symptoms nor life expectancy correlate with an FV1. No two COPD patients are the same.
I finally after a push from my GP was ‘allowed’ to do rehab, but the program is such that it only allows patients to enter again 2 years later. The second time I was refused again.
It is imperative for people who “do not feel up to it”, to have a community of support to urge them on and many people with an illness just cannot make themselves take care of themselves at home alone. Some provinces or states have a Better Breathers, where like-bodied people can get together. I think it would be very helpful to have ongoing COPD rehabs and have patients pay a fee after their provincial freeby. In this way, COPD patients can build a social community which could develop into mutual friendships. Friendships and support is healing physically and mentally. And a lot more understanding than cold physicians offices.
Being breathless all the time is isolating in itself, who feels like walking or talking when you are so breathless.
No two people with copd are the same and it is time the health industry starts treating each person with COPD with respect no matter how they became with COPD.
Everyone deserves the same healthcare, whether you became ill through an addiction or through no fault of your own.
I think taxes are added to the addiction products, to pay for healthcare later in the patients life….kind of ironic, the government chooses to supply addiction causing agents, then taxes it highly, but the tax payer addicts are some of the most poorly treated individuals in healthcare.
Another thing I have to remind everyone employed in the sickness industry, is that, if not for illness, there would be an awful lot of people without jobs.
Hi I Live in Winnipeg it would be great to have somebody to go for walks with that at COPD is well I do have a tank though I did the wellness Institute program three times now I just keep feeling good getting worse and worse I do believe a part of his needing a support group if you would like my number just text message me and ask
To those diagnosed with COPD- the LivingwellwithCOPD (LWWCOPD) Is a reallt good source for information and lots of educational videos.
You do require to sign up for a free account:
Hi Sam I agree with you there has to be more people with COPD so we can form together a group and support one another I have COPD I need a tank I think if I had a lot of practice walking with people I could I am a widow so I don’t have anybody to walk with me or I could probably I am a widow so I don’t have anybody to walk with me or I could probably Through my tank to the curb but there’s no support to do that If you like to contact me by Facebook or phone let me know it would be nice to have a support groupg
Thank you for drawing attention to this issue. The lack of pulmonary rehab resources, despite excellent supporting evidence, is a critical gap for a large number of patients. One challenge is that many patients require ongoing rehabilitation to sustain benefit, or need to attend more than once – this increases the demand for the services and highlights the problem further.
This is exactly what I am looking for! I live in Winnipeg, MB, and I am wondering is,any such program exists here in my city. I was diagnosed with non-smoker COPD eight yrs ago. Thanking you sincerely, Jeanette Gibson
Yes, there are 3 pulmonary rehab programs in Winnipeg: Deer Lodge Centre, Wellness Centre at Seven Oaks Hospital and Misericordia Health Centre. Here is more information: http://www.wrha.mb.ca/prog/rehab/prp.php