machado: should we be treating 'easier' chronic cancers in community hospitals?
not everyone has access to the expertise, skill and connection to research that can be found at centres of excellence, but they should.
8 minute read
a hospital's effectiveness has a lot to do with access to funding, the ability to participate in important research, like clinical trials, and their attractiveness to smart cancer specialists. getty
ask any person diagnosed with a life-threatening illness to name the things they hope for — besides survival, of course — and there’s a good chance they will say something a little like this: a doctor who is the best in that disease space, who knows the best way to treat it, and who has the skills and knowledge to know what it will take to give them the best shot possible if things go sideways.
after all, the needs are pretty straightforward when the threat of a scary disease is breathing down your neck — you need the person in charge of slaying that dragon to know exactly how to take it down. and while expertise is crucial, there are other things too, like instinct, connections with other experts and the willingness to match their patient’s dogged determination to make it through.
my oncologist is that guy. he once diagnosed a pharmaceutical rep who had become ill in a board meeting — it took him about five minutes to schedule her for blood tests and an appointment with a specialist. around the time that the h1n1 virus was the thing we worried about catching, i was sitting in his office talking about a study he had written, when he interrupted me to ask if i was feeling ok (i thought i was feeling ok). he called a nurse to do a swab of my throat — i left that day with a pack of antiviral tablets and strict instructions to get some rest. he was also the one who expedited a mammogram when i felt a lump in my breast, a series of scans when an x-ray for pneumonia showed something cloudy on my right lung, and the one who shared insights on my brother’s cancer treatment which was happening on another floor.
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a doctor’s instinct can mean life or death
it’s not just me, and it’s not just him. in the more than a decade since i was diagnosed with cml, a rare chronic cancer that is treated with medication, i have heard similar stories from other patients — some under his care, some not — about things caught early because of a doctor’s instinct and experience, timely referrals to expert specialists in the same building, and survival because of a willingness to try that last-ditch effort when a patient asks them to.
when he announced he was retiring and suggested that i move to a hematologist at a community hospital, it was not easy news to take. he and i have a history, as do most patients and their doctors. when we run into each other at conferences, we often make time to have a drink or cake, and if he brings a resident along, i will joke that i am in love with him so that his cheeks turn pink. what i mean is that i am so grateful to have had the luck and benefit of his skill, knowledge and experience — he has made all the difference in what life with cancer has looked like for me and so many other patients. this is mostly because of who he is, but also because of where he is — a world-renowned cancer centre.
there’s a lot that’s great about community hospitals. for one, they make it possible for people to get care close to where they live, reducing inequities based on access, cutting travel time, as well as costs for them and the healthcare system. but they haven’t always enjoyed a reputation for efficacy and skill when it comes to cancer and other complex diseases, mostly due to the fact that they simply don’t see the volume of patients that academic centres do. and there’s a cost to this: while research on canadian community hospitals is hard to come by, data from the u.s. show a lower quality of care and worse outcomes, like poor survival rates, at community hospitals versus academic centres/centres of excellence.
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within cancer groups, particularly those supporting people with uncommon types of cancer, it’s not strange to hear of someone seeing a cancer specialist at their local hospital and having to sit through an excruciatingly anxiety-provoking bunch of minutes watching them use google to not only find out more about the cancer, but also the treatment. it’s not a judgment (though the internet search could have been done before stepping into the examining room, just saying). the reality is that community hospitals, particularly those in rural areas, don’t always see a lot of certain kinds of cancer. i once met a young woman who, when she was diagnosed with a rare-ish type of cervical cancer, the oncologist introduced himself as the guy who had never treated that kind of cancer before, but who was very eager to learn about it.
o.m.g.
of course, it’s unfair to expect every doctor to be familiar with every disease and well-versed in individual treatment protocols. ideally, the doctor we see is, if not an expert in our disease, at least someone who has access to solid advice when they need it, and has the ability to care for their patient with confidence, compassion and a determination to do the very best for them. and to be fair, many community hospitals have exactly these people. but it’s not hard to understand why one would prefer to start their treatment journey at a healthcare facility that specializes in their disease, or at least houses experts who do, especially if their cancer veers into uncommon or rare territory. after all, we’re not seeking advice on what the most flattering haircut would be, we’re talking about our lives. there’s no time to be googling or guessing.
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should chronic cancers be treated in centres of excellence?
about six years ago, the quiet chatter among the administrators of specialized cancer centres claiming that chronic cancers shouldn’t be treated in centres of excellence began to rise to a dull roar. we needed to “free up beds” they said, for the more aggressive cancers. my oncologist and i were invited to a meeting in a toronto hospital’s boardroom to make a case for why cancers that were being held at bay with medication deserved to sit in the waiting room right alongside the more deadly kind, at least at the beginning of treatment.
the meeting room was blindingly lit with long white tubes of light that lined the ceiling and reflected off of a shiny black rectangular table. the administrators, about six of them, were already seated when we walked in and there was a white screen with a graph projected onto it that showed the number of people with cml who received treatment at that hospital — it was in the thousands.
after brief introductions, things got started. the admins went first, speaking in bullet points: cml was a good example of a cancer that was well-treated, they said, adding something along the lines of it being just as good as cured and so easy to manage that it made perfect sense to move patient care into the community. cancer care couldn’t get easier than this, was basically the gist of one executive’s closing comments.
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they weren’t necessarily wrong in describing cml as fairly straightforward and manageable. but what they missed was the dark side. chronic cancers come with a degree of uncertainty. medications don’t always work, or work forever, mutations can develop that easily change the game into a deadly one (more than 20 per cent of people with cml develop a drug-resistant mutation) and people with cancer — any kind — are always at risk of complex complications. complications that demand expertise in order to ensure the best possible outcome.
patients deserve the best chance at survival
when it was our turn, we talked about the value of this expertise and the well of knowledge that exists in centres of excellence. my oncologist delivered a passionate speech about how the ability to manage chronic cancers like cml, and manage them well, has come about because of dedicated cancer centres like the one we were standing in that day — “it’s how we become experts,” he pointed out. he also talked about what patients deserve: better survival rates made possible because of the ability to treat effectively, which, in turn, only comes from being specialists and having access to leading research and the experience of global partners.
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our closing comments had nothing to do with “easy” cancers that had overstayed their welcome in academic cancer hospitals. rather, we urged the administrators to consider whether community hospitals were ready and equipped to take on more complex and uncertain cancers, and if not, what we needed to do to get them there.
that was six years ago, and in that time, i am not sure community hospitals have quite reached the level of experience with some forms of cancer that they need to be at in order to best benefit patients. and it’s not just an issue of lagging behind, although that’s worth noting.
without these things, the onus falls on the patient (as with just about everything in healthcare) to learn as much as they can about their disease, advocate for leading edge care based on science and along the way, educate their healthcare provider.
i haven’t yet decided whether to stay at the cancer centre, or move to a community hospital. at the same time, i’m very aware how much of a luxury it is to even have that decision to make, especially given the state of our healthcare system. still, as the trend toward filling community hospitals continues, the goal needs to be about nothing more than doing what’s best for patients.
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not everyone is lucky enough to have a specialist like mine. but they should be.
lisa machado is the executive producer of advocacy & better health, an initiative that provides advocacy groups with the tools, strategies and support needed to build community, raise awareness and make change.
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