The following is a guest post by Dr. Andrew Howard:
Like many Americans, I was sad to hear about Senator John McCain’s recent cancer diagnosis. Though I don’t always agree with his political stances, I greatly admire many things about him, including his service during the Vietnam war.
Senator McCain has a type of malignant brain tumor called a glioblastoma multiforme (also called a GBM). This is the same sort of tumor that Ted Kennedy, Beau Biden, and Ethel Merman had. Since the news about the senator’s diagnosis came out, a lot has been written about the fact that GBMs are associated with a poor prognosis. This has made me think about the term “prognosis.” In my experience, patients and their families often misunderstand how doctors think about that term.
Prognosis is all about trying to answer the question, “What’s going to happen to this person?” It’s not always easy to tell. However, early in my training, my mentors taught me that all cancer patients can be divided into two groups, which they called “curative” and “palliative.”
If a patient was palliative, that meant that there was no real chance for curing their cancer. Treatments may still be helpful for slowing the cancer’s growth and reducing symptoms. But we knew from the beginning that the cancer would eventually cause the patient’s death.
Curative patients, on the other hand, had cancers that were potentially…well, curable. The goal of their treatment was to entirely eliminate their cancer. I often imagined those patients finishing their cancer therapy and going on to live long and healthy life. Eventually, I hoped, the cancer would just be a faded, bad memory in their past.
Even in cases where the goal is curative, there is still no guarantee that treatments will cure the cancer. Instead, treatments are intended to make it as likely as possible that the patient will be cured. Curative treatments are all about playing the odds. It’s like we’re at a casino in Las Vegas, and we’re trying to maximize our chances of winning at the blackjack table. With curative treatments, we’re doing everything we can to stack the deck in our favor.
Here’s another analogy: Imagine you’re out for a walk, and your goal is to cross a busy street. You could just step blindly out into traffic, but your risk of not making it to the other side would be high. There are some simple things you can take to make it more likely that you will make it across. You could:
Doing any one of those alone would increase your odds of making it across the street alive. Doing two of them would improve your odds even more. Doing all four would give you the best shot. However, even if you do all four of them, your likelihood of making it still isn’t 100 percent. A speeding truck could come out of nowhere, or you could be hit by lightning, or you could have a heart attack when you’re halfway across. Also, even if you don’t do any of them, there’s still a chance you could, by pure luck, make it across the street alive. However, no one would ever recommend you try that!
Your cancer treatments are like these things you do to improve your likelihood of making it across the street. They are each intended to improve your chances of achieving a cure. They can’t make it absolutely certain you’ll be cured. What they do is shift the odds in your favor.
I’m sure Senator McCain’s doctors will do all that they can to stack the deck in his favor. Glioblastoma is usually treated with a combination of surgery, radiation, and chemotherapy. Though the odds aren’t great, a small minority of patients do achieve full cure, and go on to live years and years after their diagnosis. I certainly hope that for Senator McCain.
Andrew Howard, MD, is an Assistant Professor of Radiation & Cellular Oncology at the University of Chicago. He has written a new book for cancer patients and their families titled So You’ve Got Cancer: A Super Patient’s Guide to Diagnosis, Treatment, and Beyond. You can find it here.
Last week I had the good fortune to meet Dave deBronkart, a man known throughout the world by the simple moniker “e-Patient Dave.”
Dave’s story is widely known: diagnosed with metastatic kidney cancer at age 56 in 2007, he was given a prognosis of six months to live. By scouring the internet and crowdsourcing ideas for newer therapies (and their pitfalls), Dave tried an at-the-time-experimental therapy (with an efficacy of 20% back then) called IL-2.
Happily, it worked. Next year Dave will reach his tenth anniversary of being cancer free.
The world is a much better place with Dave in it. Taking the full measure of his experiences in health care, Dave has become one of the leading voices of participatory medicine — the (not-so) revolutionary idea that patients should be directly involved in their own health care.
He is now a sought after public speaker, thinker, advocate, and collaborator.
He gave a TED talk in 2011 that you can view at the bottom of this post. Last year, I shared a blog post he wrote about his wife Ginny’s amazing experience undergoing quadricep-sparing bilateral knee replacements from orthopedic surgeon Howard Luks.
One thing I always thought was that the term ‘e-patient’ referred to ‘electronic,’ as in ’email.’ In fact, Danny Sands, who has long been Dave’s primary care doctor, is one of medicine’s earliest adopters of using email to correspond with his patients. He also was instrumental in setting ground rules for its use (e.g. never use email in an emergency).
But as I found out in preparing to meet with Dave, the “e” in ‘e-patient’ actually stands for
Dave and the e-patient movement, united behind such advocacy groups as the Society for Participatory Medicine (S4PM) seek to use the collective power of engaged clinicians and patients to find the best available help at the time it’s needed. From the S4PM website:
Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. Participatory medicine is an ethical approach to care that also holds promise to improve outcomes, reduce medical errors, increase patient satisfaction and improve the cost of care.
There’s no doubt that there are people in my profession who still cling to the ideal of the doctor being the repository of information, who view the patient as more of a passive ‘customer.’
For some patients, too, this is still a comfortable model. And that’s OK, if that’s what you want. But there’s a whole world of engaged docs and patients out there that want to interact in many of the new ways: via email, through social media, using patient portals (special protected systems that allow you to reach your health care team or look at results), even video chats (telemedicine, anyone?).
I learned some of Dave’s interesting backstory: He graduated from MIT, calling his time there ‘vocational school.’ That’s because his best takeaway skill was typesetting — he was trained to typeset the school newspaper. Throughout the 70s an 80s Dave held a number of jobs in the field, where he found one of his best skills was being a translator: explaining engineering-speak to the sales people, and explaining the needs of sales people to the engineers.
I spent more than two hours with Dave — including an interview in a library followed by a lunch. The man is a tour de force. I look forward to continuing our dialogue.
When we talk about harm in the world of health care, we’re usually referring to patients and the facilities in which we provide care. These are the ‘typical’ things we hope to avoid, not only because they are bad outcomes, but because they now carry the specter of financial penalties when they occur:
But Gary Cohen of the advocacy coalition Health Care Without Harm takes a much broader view of the harms that health enterprises can cause. Founded in 1996, HCWH is now a multi-national coalition of health care enterprises, governmental and non-governmental agencies, and other advocacy groups.
Cohen and HCWH have had some amazing successes. In less than two decades, HCWH has been able to reduce the number of medical waste incinerators in the U.S from more than 5000 to fewer than 100. Why should we care? It turns out that burning medical waste pours tons of the harmful chemical dioxin into the environment.
Another example: The formerly ubiquitous mercury thermometer. They used to break all the time. Fun to play with the drops of mercury, but highly toxic. Neurotoxic, in fact. And when mercury gets in our water supply, the fatty fish we eat (salmon, swordfish, tuna, mackerel, even shark) slowly poison us — which is why pregnant women and children are advised to avoid eating fresh fish in more than minute quantities.
HCWH was able to make the case that there are technological alternatives to mercury thermometers — that work just as well and are much, much safer. And they’ve been successful. When’s the last time you saw or used a mercury thermometer?
For this tireless advocacy, which also includes making hospital food supplies safer and hospital buildings themselves green and super safe (think natural disasters), Cohen was awarded a MacArthur Foundation Fellowship (think ‘genius grant’) last Fall.
You can hear an interview with Cohen here — give a listen and broaden your perspective on reducing harm in health care.