Helen Osborne: Welcome to Health Literacy Out Loud. I’m Helen Osborne, President of Health Literacy Consulting, founder of Health Literacy Month and author of the book Health Literacy from A to Z. I also produce and host this podcast series, Health Literacy Out Loud.
Conversations between clinicians and their patients often focus on benefits and risksof options for treatment and care. That often includes practical matters such as side effects and necessary follow-up appointments. But should this focus be the same, especially when talking with patients who are nearing the end of their lives?
Dr. Christopher Booth knows a lot about this topic. He is a Medical Oncologist and Health Services Researcher at Queen’s University in Kingston, Canada.
In his clinical practice, Chris provides care to patients with gastrointestinal cancers. His research explores issues of access, quality and value of cancer care in Canada, India and other nations around the world.
Chris is a well-published author and educator and he has received many accolades for his work, including the “2022 Exceptional Healer Award” at Kingston Health Sciences Centre for his work embodying compassion, respect and clinical excellence.
Welcome to Health Literacy Out Loud, Chris.
Dr. Christopher Booth: Thank you, Helen. It’s wonderful to join you. Thank you for that kind introduction. I’m looking forward to our discussion today.
Helen Osborne: I am, too. I want to share with listeners how I met you and first heard about you. I love listening to podcasts, not just my own. I’m listening to a podcast and you were the guest. It was “Freakonomics, M.D.” It was about science, medicine and economy, and you were talking about a topic called time toxicity.
I was so taken by what you had to say, I listened to every moment of it and then I followed up by asking you to be a guest on Health Literacy Out Loud. I think this topic has relevance for our audience, too.
Can you take this from the top? Explain to us all, please, what you mean by that term time toxicity.
Dr. Christopher Booth: Thanks, Helen. This is something that’s probably been percolating in the back of my mind for years just looking after patients.
A large part of my clinical practice is patients with advanced, incurable cancer. As you can imagine, I have a number of very difficult or emotionally-laden conversations with patients near the end of life about which treatment options they may or may not wish to pursue.
In the last couple of years, we’ve started to write about this. We conceptualized time toxicity as the time that a patient invests in seeking medical care.
From a pragmatic point of view, it involves travel time to appointments, time in the waiting room, time having procedures and time ending up in hospital because of a treatment side effect.
In the context of cancer, obviously there are visits with the health system that are related to the disease when someone gets sick because their cancer is growing and they have pain, vomiting or something. But then there are interactions with the health system that are chosen as part of a treatment package.
We felt that that was not really well recognized or discussed either in the literature or, more importantly, even at the bedside when making decisions with a patient about what kind of treatment they would want to pursue.
In the broad sense, time toxicity is the added time that a patient will spend engaging with healthcare because they’ve chosen to pursue a specific treatment plan.
Helen Osborne: Thank you for that. It’s interesting. I’ve been working on health literacy for years and years. Often, when I talk about time, I’m speaking to professionals and they’re always saying, “We don’t have enough time. How can we fit this in?”
When I think about the conversation of time, it’s usually about all the time pressures that providers have. You’re looking at this very differently. You’re talking about what patients choose to do with their time when their time is fairly limited.
Dr. Christopher Booth: Yes, exactly. Again, the clinical context here will really influence the extent to which this time is actually toxic or not.
For example, we used oncology as the test case here, although this certainly applies to all areas, I think, of the medical system. But if someone is being treated with curative intent treatment and their life expectancy is measured in many years or decades and the treatment offers large benefits, then the amount of time they invest pursuing that treatment is probably fairly small and, for most people, would be well worth the tradeoff.
Where I and our group have been most interested and actually concerned about time toxicity is in the context of incurable cancer when time is short and the treatment benefits are usually very small.
Typically, someone who has perhaps a life expectancy of six months or one year and who is making decisions about whether they want to go onto second-line, third-line or fourth-line palliative chemotherapy where the benefits in my field are very small, that’s where we became concerned that perhaps patients are not aware of what time they might be trading off to seek treatment.
Helen Osborne: Chris, I know you have a robust clinical practice. Do you meet up with folks and especially the families of the folks who say, “I just want to do everything. How could I not do this? How could I not accept this next treatment? I want to just try everything,” without ever thinking about the offset of, “Is this really how you want to be spending your time?”
Dr. Christopher Booth: This is a really good point, and I think it speaks to a broader narrative in oncology. This is an area I’ve done work in for many years, which is the concept of value, and most notably the magnitude of benefit that therapies offer patients.
Within oncology, and I’m sure this applies to other disciplines as well, we have I think three buckets of treatments.
We have treatments that have very large benefits for patients. It’s transformational. It clearly helps people live longer and better lives, and that’s Bucket 1.
We have Bucket 2, which is treatments that have a moderate benefit. They do help people, there’s good evidence and they are likely something that most patients would want to pursue.
Then there’s a third bucket, which is treatments that have very small benefits. In fact, most of these in oncology do not help people live longer or better lives.
Most of the treatments in his third bucket are actually just approved based on tumor measurements on a CAT scan. Unfortunately, a very large proportion of the treatments we use in cancer fall into that third bucket.
This is not well recognized or talked about within our field or in the popular press or media or even in the broader medical community, and so I have concerns.
I think there’s growing recognition that often patients who are in a very vulnerable part of their life, they’re scared, they’re sick and they’re facing their own mortality, might be making treatment decisions not fully understanding how small some of these benefits might be.
Again, when you consider these small benefits against the side effects of treatments . . . and I think we do a pretty good job generally talking about the risks of nausea, fever and blood clots, but we often don’t talk about the opportunity costs, which are the other things that will be traded off.
Most important for someone who has only a limited time to live is their time. This is time that’s being traded off where they could be spending it at home with family, they could be traveling, they could be gardening or they could be pursuing a pastime or work that’s meaningful for them.
This is something that we really don’t talk about in our field. I think there are probably two problems that contribute to that.
The first is that the oncology research community hasn’t really measured this or described it to allow clinicians to have informed discussions. Then Part 2 is that I don’t think it’s really been explicitly on the radar of clinicians in the cancer space.
It’s intuitive, it seems so common sense, but it’s something that we’ve been missing, I think.
Helen Osborne: I want to get back to what you were talking about, the benefits. You talked about three buckets of benefits. In health literacy, we’re very much concerned about whether we share an understanding of the words. I’m curious about your take on that word benefits, especially when you come to that third bucket.
You’re saying that the benefits might, on some kind of a scan, reduce tumor size, but the benefits may not really affect quality of life. That’s how I’m interpreting it.
Do you ever talk with patients about what that term benefits means and how we might have different perceptions of that?
Dr. Christopher Booth: Yes, Helen, I think this is a huge issue in my field. I’m still learning how to do this. I’ve been practicing now for 15 years, but I’m still refining my approach.
I think I’m usually pretty explicit about this. I think we need to make it very clear to patients in a compassionate way what the limitations of our treatment are.
I’ll give you an example. I’m an oncologist, and I find this shocking. I would think the general public or patients would find this shocking. It’s the fact that the vast majority of new medicines that are approved for use in oncology do not improve how long someone lives or their quality of life. Full stop.
Helen Osborne: They don’t?
Dr. Christopher Booth: There’s no evidence they help people live longer or better lives. What they are approved on is the fact that they delay the amount of time on a CAT scan until the tumor grows by a little bit.
There are some circumstances where that tumor growth has been shown statistically to correlate with how long someone lives, but the vast majority of cases, that’s not true. There is no relationship between whether a tumor grows from three centimeters to four centimeters in the liver and how long the patient lives or how they feel. We don’t really talk about that very much.
What makes it even more confusing from a health literacy perspective is that the endpoint, which I’ve just described, on imaging is called progression-free survival. You can imagine that the patient, the family and even the oncologist anchor on the third word, survival.
Helen Osborne: Of course.
Dr. Christopher Booth: The problem is in the vast majority of circumstances, there’s no improvement in overall survival or how long you live. It only delays the growth on a CAT scan by on average a couple months.
Helen Osborne: Oh my goodness.
Dr. Christopher Booth: We have these very expensive medicines with a lot of side effects and toxicity that don’t help people live longer, and what they might do is slow down a tumor growing on a CAT scan by a couple months.
This is a huge problem in our field, and one that I think is becoming increasingly recognized. But it certainly doesn’t fit with the narrative that people read in the newspapers, which I think fuels a lot of perhaps unrealistic expectations in the public and in the minds of patients and families.
Helen Osborne: Certainly. I see studies all the time about studies that might extend life or do this or that, but it’s on a mouse.
Dr. Christopher Booth: Correct.
Helen Osborne: It’s not even transferring to people.
I actually did hear of someone who does show up, the family came from far away, drove to this cancer center because they wanted that treatment for their very ill relative in their car. It was on mice, but it was glorified in the media.
It sounds as though, to me, that . . . My hands are going in parallel ways, but never touching. You’ve got the outcomes and the measures by the researchers, by the groups that approve medications, by the clinicians and then also by the patient and his or her family. They’re not talking about the same thing necessarily.
Dr. Christopher Booth: Correct. Absolutely. Even, Helen, to take that one step further, these new “breakthrough medicines” are either done in mice or they just slow tumors on a CAT scan by a couple months.
In those medicines that actually do help people live longer, on average the amount of time that each medicine adds is two or three months.
Again, I don’t want to take away the meaning of two or three months for any individual patient, but we also need to remember that these benefits in clinical trials are always larger than in the real world where patients are sicker, with more comorbidity, etc.
All of a sudden, we have a drug with toxicity that’s going to put you in the chemo unit for one day every week that might help patients in a trial live for an extra two months. In the real world, it might be closer to three or four weeks. These are really complicated discussions.
Again, we come to this not saying that we know what the answer is and that we should tell patients how they spend their time. I feel our job as researchers is to generate the information about time, and then as clinicians at the bedside, to share this information with patients so they can make an informed decision about how they want to spend their time and how their own values and preferences are aligned with the recommended treatment.
Helen Osborne: I was wowed the first time I heard you talking about it, and I’m so glad now. It sounds like there’s actually a role in there for health literacy to help clarify everybody’s meaning of these terms that we think we’re all talking about the same thing, but we’re not necessarily.
Chris, I know your work is focused on cancer. That’s where your research is. But do you think that this concept of time toxicity could be generalizable for chronic debilitating illnesses that aren’t cancer?
Dr. Christopher Booth: Indeed, I think it can. In some ways, it already has been done.
Oncology is a little bit late to this. When we started writing about this, we reviewed literature. Actually, our colleagues in surgery, geriatrics or intensive care have been actually measuring this perhaps in a slightly different way, looking at after a major operation or a trauma how many days in the next 90 days does the patient spend in hospital versus at home.
Our colleagues in other disciplines have been measuring this, but often on a shorter time period.
My sense is that across all areas of medicine, there’s an epidemic of low-value treatments. By low value, I mean treatments that have very small benefits.
I’m quite confident, and my colleagues in other disciplines have reaffirmed this when I’ve lectured on this, that the concept of time toxicity is probably relevant across all different diseases, especially when treatments are being given that have very small benefits.
Helen Osborne: Chris, the listeners to this podcast might be clinicians of all ilks. We might be in public health or working at community organizations. Somehow we’re all interested in communicating more clearly today than we did yesterday.
What tips and strategies do you have for all of us to talk about this issue of time and values and benefits? How can we do a better job communicating that in our worlds?
Dr. Christopher Booth: I think this is part of my own personal journey as a clinician. As I’ve gained experience and matured, and perhaps become more comfortable in my own practice, I’ve been able to be more comfortable having these very difficult discussions.
I think one of the reasons that patients end up getting very low-value treatments near the end of life is that there’s a sense of doing something is better than “doing nothing.”
Rather than having a very difficult discussion about end-of-life care and stopping active chemotherapy, it might feel easier to say, “We’re going to switch and try something else that looks promising.”
I think it’s going to take a culture shift within our field to recognize that having these conversations is really important to patients. All patients are different and will have different preferences in how they choose to spend their time, but I think this is the most important part of our job.
I think anyone can look into an oncology textbook and get an idea of which chemotherapy regimen to prescribe in a certain circumstance, but I think it’s the art of oncology knowing when to move forward and when to maybe put things on pause and have a more detailed discussion.
Helen Osborne: I’m also thinking of other situations talking with folks I know who are very ill. I tried to introduce the concept after I heard this from you about, “How do you want to be spending your time?” That expectation for that person and their caregivers was, “We need to do everything.” But did they really? Is that the best use of the person’s time?
For all of us as loved ones and friends of others, how can we communicate this with people we care about?
Dr. Christopher Booth: This is a societal issue about being a bit more comfortable talking about end-of-life care and about death. I think, though, it is a health literacy and communication issue.
I think that the narrative that people “want to do everything” is because they believe that the treatments they’re going to be driving seven hours to get or the trial they’re going to go on at a major academic center, they believe the potential benefits are much larger than they actually are. I think this does start with patient empowerment and education.
For example, in one of our essays that we published in the Journal of Clinical Oncology, we took a well-known clinical trial in advanced cholangiocarcinoma, or bile duct cancer, and just through some simple arithmetic, we showed that this is a treatment that in the clinical trial helped patients live for an extra eight weeks.
But when we added up the number of visits and days spent seeking healthcare that were required to get this treatment, it became pretty clear that basically every added day of survival would be traded off by an extra day in the health system waiting for treatment, getting treatment or dealing with the side effects.
These are complicated discussions, but I don’t think patients are aware of this. This is for a treatment that actually helps people live longer. You can imagine for treatments that don’t even do that and just shrink tumors. These are conversations I think we need to have.
In my experience, most patients are pretty pragmatic. If you take the time to speak clearly about this without using jargon and doing it in a compassionate way, most patients would say, “Thanks, but no thanks.” Some patients will say, “I hear you, but still for me it’s important to do this.” That’s up to them. They’re empowered to do that.
I think we need to give this information to patients and allow them to make the choice that’s best for them.
Helen Osborne: Thank you for all of this. As I said, I first heard you talk on a podcast about this to a very high-level, professional audience. Now you’re talking with us on Health Literacy Out Loud, and I’m so grateful of that.
On your Health Literacy Out Loud web page, we will have links to some of your many papers that are about this. But I have to tell you that one you shared with me, I think, is particularly relevant to where we are in this conversation now. It is called “What really matters at the end: perspectives from a patient, a family member and an oncologist.”
You really bring that humanity as each of you speaks about that issue of time and what it means to them, whether they’re the patient, the caregiver or you as the physician. It’s such an important issue.
At this point, I think we’re going to put a pause in this conversation. You’ve given us and me so much to think about. I thank you, too, for not only raising these issues, but also connecting it with the issues of health literacy and how we communicate health information.
I want to thank you so much for being a guest on Health Literacy Out Loud, and even more for raising our greater awareness about our time and how we choose to spend it. Thank you, Chris.
Dr. Christopher Booth: Great. Thank you, Helen. It’s been a privilege to speak with you today. Many thanks.
Helen Osborne: As we just heard from Dr. Christopher Booth, it’s important to communicate about all the things that matter when it comes to treatment and care. That includes the patients’ use of time, especially in consideration of their values and what they feel are benefits. Communicating clearly like this is not always easy.
For help clearly communicating your health message, please take a look at my book, Health Literacy from A to Z. Feel free to also explore my website, www.HealthLiteracy.com, or contact me directly at firstname.lastname@example.org.
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Until next time, I’m Helen Osborne.