How do you measure quality of life? As researchers across fields discover new drug therapies or disease prevention—in breast cancer as well as other fields—science finds innumerable ways to measure physical results. But what about the social, behavioral, and psychological aspects of cancer care?
As importantly: How should medical providers discuss such realities with patients—to help them understand the important benefits, but also the emotional and physical challenges that can come with some therapies and preventions.
This is just one area of extraordinary impact that Professor Dame Lesley Fallowfield has made in medicine. Dame Lesley is professor of psycho-oncology at Brighton & Sussex Medical School at the University of Sussex where she is director of the Sussex Health Outcomes Research & Education in Cancer group.
She has been a BCRF Investigator since 2016—the same year she was made a Dame Commander of the Order of the British Empire by Queen Elizabeth II for services to psycho-oncology.
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Chris Riback: Dame Lesley, thank you for joining. I appreciate your time.
Lesley Fallowfield: My pleasure. Glad to be with you.
Chris Riback: So, let’s start at the very top. What is psycho-oncology?
Lesley Fallowfield: Yes, sounds a bit sinister, doesn’t it? Like a vision from the shower scene in “Psycho.” Essentially, it’s looking at the social, behavioral, psychological aspects of cancer care. So, that embraces a whole range of things. It can be anything from support for patients, educational training of healthcare professionals who deal with cancer patients, to actually looking at ways to measure quality of life in big clinical cancer trials, for example.
Chris Riback: And I wanted to ask you about that and quality of life. It is such a prime overlay of so much of your life’s work. And for us outsiders, we think of healthcare professionals in a clichéd sense, I would say. It focused primarily on physical health, is the patient sick? Is the patient healthy? Will she live or not? Why were you inspired to think and act so seriously in the area of quality of life? And to pick up on what you just said a moment ago, how do you measure that?
Lesley Fallowfield: Okay, well, that’s quite a big question to unpack. I mean, if we start at the very beginning, I used to be actually a visual scientist and I was developing ways to measure the integrity of the optic nerve in patients who’d got demyelinating diseases like multiple sclerosis because they started to have all sorts of strange visual problems that clinical tasks couldn’t pick up. So, I developed some ways to actually measure the things that patients were complaining of. So, that was where my career was focused. And sadly, my very closest friend who used to help me with the school, run with the kids, she was only 34 and she developed acute myeloid leukemia. And she had one of the first bone marrow transplants and sadly died of graft-versus-host disease. Now, when she was in hospital suffering the appalling sort of problems that you get with that, she looked up at me and she said, “You’re meant to be so clever. Why don’t you measure something important?”
And I said, “Well, I am measuring things that are important.” I said, “What do you mean?” And she said, “Well, why people do things like this to you without really telling you what could happen? Why can’t you measure the benefits of actually doing things like that with so many serious side effects?” And she died about two weeks later, and I thought very long and hard about it and read an article by a breast cancer surgeon, in fact, saying that he thought the psychological aspects of breast cancer were poorly understood. So, I just phoned him up and I said, “Give me a job. I want to come.” And he said, “Well, you don’t know anything about cancer.”
And I said, “So teach me.” I said, “I know how to measure difficult things. I know how to measure things that people think you can’t measure. And I’ll find someone in the world who’ll give me a job because I promised my friend.” And so that really is the background. I am a scientist. I had a degree in experimental psychology in neuroscience, but I’ve applied all of that work into my psycho-oncology and certainly measuring difficult things has been a major part of that.
Chris Riback: Well, I don’t know how anyone could have withstood the pitch that you gave, “I made a promise to my friend,” and obviously that person didn’t resist your pitch. It’s also just so striking and sad to hear. So that wasn’t even being considered, measured at that point, as your friend was going through her cancer treatment?
Lesley Fallowfield: I mean, there’s several ways of looking at this, isn’t there? I mean, obviously when people have life-threatening disease, many people, not just the healthcare professionals, families as well, are so focused on survival, but of course, survival at any cost isn’t always very worthwhile. We need to think about the quality of survival and that’s actually as relevant now as it was then. Certainly in, we’re talking about 1984, I’m very old, I don’t forget, in 1984, if you looked at a literature search then, you’d probably come up with about two or three papers that actually mentioned phrases like quality of life. And so, it’s been a long, hard road to actually get to the stage now where people do accept that it is important. I mean, one of the things that has happened over the last a couple of decades, really, I think I’d say, is that, because of our improved understanding of the molecular biology that underpins a lot of the development of cancers, we’ve seen some incredible therapeutic advances in new and different treatments.
That actually means that many patients have got a realistic prospect of cure or living much longer with their disease and hopefully living well. And a lot of these advances have been because of the fantastic researchers that are funded by BCRF. So, thanks to all the people who make donations because they really have made a difference. But if we come back to the, if you like, quality of survival, nothing actually comes without cost. And I don’t mean financial cost, I mean toxicities and impact therefore on activities of daily living that make life worthwhile. And often it is baby steps in terms of improvements, but over the years this builds up, if you’ve got a new drug or a new procedure that can add a few extra months or extra years of life, it’s so important to be absolutely clear about what the toxicities and downsides are. Not because we then stop actually giving people those beneficial and efficacious treatments, but so that we can work out what sorts of ameliorative interventions or supportive things we can put in place up front to help patients cope with the side effects.
So, if you think about it, I mean, if we look at metastatic breast cancer, for example, and we’ve seen some big changes there with sometimes people living with metastatic disease for many years, but a lot of these patients, of course, have other lives, other responsibilities that they want to fulfill. They wish to pick up the grandchildren from school so that their daughter can go back to work or maybe they want to look after a [a spouse or mother or father with dementia] or just play tennis and walk the dog. And if you’ve got, for example, horrible, chronic diarrhea or fatigue, you’re not going to be able to do any of those things. So, the question becomes well, do I want to live in this house-bound state because of the side effects of treatment or do I want to take another treatment, which might not extend my life quite as long, but would at least allow me the prospect of doing the things that make my life worthwhile? So that’s why we’re very focused now on the quality of survival, we certainly are doing great things about the quantity of life, but we’ve really got to do a lot more about the quality of life.
Chris Riback: Who are those conversations hardest for? I mean, I hear you talking about balance and balancing the toxicity versus quality and what you just said, the quantity versus the quality. Are those toughest for the patient? Are those toughest for the family? And what about the medical profession, how skilled or not skilled, generally speaking, do you find them at that?
Lesley Fallowfield: Well, that’s a question because we’re all different, aren’t we?
Chris Riback: Mm-hmm.
Lesley Fallowfield: We talk a lot now about shared decision-making so that no decisions about me without me, that patients and their families need to be an integral part of the decision-making about what to do next. That’s, of course, easier said than done really, because first of all, I mean, there’s several things, first of all, there’s the complexity of information giving about things and a lot of treatments, a lot of tests and everything, you need an undergraduate degree in, I don’t know, biology to understand some of it. So, putting complex information in front of a family and patient in understandable terms without being patronizing, of course, is a hard thing to do. And I think a lot of healthcare professionals really severely underestimate the literacy and numeracy levels of most of the general population, even people who are graduates struggle with probabilities and possibilities.
So that in itself is difficult enough, but then you have to, I think, layer into this problem in terms of communicating and having a genuine two-way exchange. The fact that healthcare professionals, not because they are bad people, they are good people fairly often, but they tend to talk up, for all sorts of reasons, the benefits, they’re very good at talking about the benefits of treatments, less competent and confident sometimes about talking about the downsides.
Now this is sometimes because you want to, it’s a hackneyed phrase, but you want to give patients hope, keep them optimistic. And that is, on one level, a good thing. But I think sometimes that the healthcare professionals themselves start to want to believe in the same sorts of miracles as do their patients. And then you’ve got an interesting exchange that goes on. So, when you’ve got a deeply anxious patient, perhaps with their relatives, desperate for positive news, healthcare professionals are human beings, too, they want to feed into that, they want to make that better, and so sometimes they over-egg the upside of things and underplay the downside of things. And I can see so easily how that happens. It’s really hard to be honest with people about therapeutic benefits versus the harms.
Chris Riback: So, you have just made clear for me, I came across one of your quotes where you stated that oncologists need to be aware of their own tolerance of uncertainty before discussing possible treatments. And I caught up on that phrase, “tolerance of uncertainty,” but I think you just described what you mean, didn’t you?
Lesley Fallowfield: Yes. I mean, maybe I could just explain it a little more in terms of some research that actually the BCRF funded us to do, which was absolutely fascinating. And in breast cancer, there’s a lot of effort now to deescalate treatment. And by that, that means not give patients treatments that really have little prospect of adding anything to cure or long-term survival. And we know from all sorts of different sorts of studies that not all women with early breast cancer need or should indeed even have chemotherapy. There are certain types of breast cancer [that are] treated well enough by surgery, radiotherapy, and endocrine treatment (hormone treatments). But, of course, it’s quite difficult to explain to a patient that we don’t always need to give you all the things that they’re expecting. Well, perhaps give them a better outcome. And so, there are these wonderful new tests called gene expression profiling tests, which basically can help determine whether or not a patient is at low risk of the cancer recurring, intermediate [risk], or high risk.
And so obviously the patient is at high risk, no question about it, they really should be offered chemo, but there’s a bigger question about the intermediate and low risk patients who probably are happier, better off not having the chemotherapy for no benefit. But if you’ve got a very anxious patient who has got a high intolerance of uncertainty and the doctor talking to her has a high intolerance of uncertainty themselves, and let’s say the score is intermediate or just on the cusp of being high, there’s no way that patient leaves the clinic without actually a prescription for chemotherapy.
Chris Riback: Because that’s certain. We know it’s going to happen there.
Lesley Fallowfield: Well, absolutely. It’s got nothing to do with the characteristics of the tumor and the results of the test. It’s got everything to do with the psychological disposition of the patient…
Chris Riback: Of both parties.
Lesley Fallowfield: The doctor talking to her.
Chris Riback: Fascinating.
Lesley Fallowfield: So, we ran all these courses where we develop lots of educational materials and we found that we could improve the doctors’ competence and self-confidence when they were talking with patients about different sorts of gene expression, risk of recurrence scores with different types of patients. So that was a really interesting study to do, because unless you give doctors some awareness of how these sorts of things, their own sorts of personality, types, attitudes, leak into the conversation, they don’t understand why sometimes patients make perhaps rather irrational decisions.
Chris Riback: That is such an interesting thing to hear as an outsider, because we think about that all the time in any conversation with a spouse, family, at work that one’s own psychology situation circumstances, learned experience, lived experience, will inevitably drive, influence, or inform any conversation that we have with someone. Particularly, I would think, the more difficult the topic, the more of those lived experiences and behaviors must form one’s own participation. But as a lay person, speaking for myself, we don’t think about that from a medical professional. We think that, of course, they’re in control of all of their faculties, medically, psychologically, emotionally, and what a fascinating way to view it and an important contribution.
Lesley Fallowfield: I think one of the problems, of course, is that medicine is not the exact science that we would like it to be.
Chris Riback: Indeed.
Lesley Fallowfield: And people don’t like ambiguity, particularly where you’ve got life threat involved. They really want a clear direction that this will help, this will not, and it’s just not quite as clear-cut as that. And I think that’s where the problem comes.
Chris Riback: Often life is not quite as clear-cut as that, unfortunately isn’t that, or it’s the reality, that’s what it is. Now, one of the things it seems that you are trying to do, in terms of helping the medical profession, helping healthcare understand those conversations, is really scale that ability, because as amazing as you might be, as incredible things as you might do, I’m willing to bet that you can only be in one place at one time. You haven’t quite figured out how to clone yourself. And so, the TRUSTING educational program that you are working on, could you tell me about that? What is it? What does it consist of? Why is it important? And if you could tie it in as well, I don’t know that it’s solely around, but I believe it’s around the idea of discussing genetic testing results. So, tell me please about TRUSTING.
Lesley Fallowfield: OK. So, TRUSTING is another educational program that we’re doing with BCRF backing, which I’m so grateful for. We spent a lot of time talking with women who are at high genetic risk of breast cancer. And as you’re well aware, you’ve got the BRCA1 or 2 gene mutation, you have a predisposition towards breast cancer, but other cancers as well, ovarian cancer, and [in] males in the family, prostate cancer. So, we were concerned about, particularly if you like, the celebrity effect of well-known individuals deciding to have prophylactic mastectomies, because they carry the BRCA gene. And lots of young women becoming very concerned about their risk because someone in the family had cancer. Now talking again with people who have perhaps seen a loved one or a family member die of breast or ovarian or prostate cancer, you can understand why they don’t want that to happen to them or other family members.
So, we spent a long time talking with families at risk who’d had different sorts of procedures or not. We talked with all the different sorts of healthcare professionals who are involved in this scene: the surgeons, the oncologists, the genetics counselors, the geneticists. And we were well aware of the fact that again, the sorts of things that people think will help patients and families make wise decisions are not always really spot on. So, we developed some materials, and we are running courses and programs for the healthcare professionals who may have to have conversations with families to try and enhance their skills. Because of all the interviews we did with families, we created our own family with some really tricky and interesting problems that weren’t exactly straightforward. And we included a deeply anxious, young woman who had been tested, but wasn’t at risk, but wanted to do anything to get both of her breasts removed.
And the program consists of lots of different videos with lots of exercises. And prior to doing the course, whoever it is, the genetics counselor, the surgeon, or the primary care physician, whoever it may be, they face the camera, have the patients that we will see in all our video vignettes asking them questions about their risk and what they should have done about it and who in the family should be tested. The participants do our course with all the different exercises, lots of group activities and then prior to leaving, they have these patients again on screen asking them the same questions, then independent coders rate the performance for knowledge and way in which the healthcare professionals impart information before and after the course. And when, and if we see that this makes a difference, like our previous educational programs have, we will then train facilitators all over the world to actually use the same materials.
Chris Riback: It is such a difficult area to think about and hear about because it also, to me, please can you correct me if I’m misinterpreting, it goes back to those questions of uncertainty and ambiguity that you were talking about before. I can’t imagine the tension and the stress that a person feels knowing that the BRCA gene [mutation] is in the family, knowing that something may have happened with a loved one and then trying to reconcile, within herself, the various choices and where they fall on that scale and having those conversations in a thoughtful, constructive way has to be central to helping a patient think through that uncertainty.
Lesley Fallowfield: Absolutely. And I think one of the things that’s probably more of a problem in the US than it is in other parts of Europe is the direct-to-consumer marketing of genetic testing. And I’m not certain what on earth a person does in such an uncontrolled way with the results that may come from that. So, we need to do a bit more, I think, in helping patients and families make informed decisions about what they ought to do. One of the things is that I always say this, and it’s true if you’ve got breast cancer, and if you’re at risk of breast cancer, breast cancer is an emotional emergency, it is not a medical emergency. And that means that you need to calm down, take a deep breath, take time to make a wise choice. It’s not a medical emergency, having something done next week is not as important as making a wise choice in a month’s time.
Chris Riback: The stress and pressure of time, it can overwhelm, and it can feel overwhelming. Dame Lesley, to close, I want to ask you about another quote of yours that I saw that had left me thinking and it’s not directly related to what we’ve been discussing, but a challenging personal area of thought as well. And that’s death. One quote of yours that seemed particularly profound to me, which of course is saying something, giving the other things that you say, was although grieving the loss of loved ones can be a difficult process, some people do speak about their loved one’s death as having been a positive experience. We need to demystify death and talk about it more. Now, most of us wouldn’t think of a loved one’s death as ever possibly being a positive experience. We are having this conversation about finding a cure, about extending high quality of life for as long as possible, but death is part of life. How is it ever possible for it to be a positive experience?
Lesley Fallowfield: It can be a positive experience if, in fact, one has gone beyond the dreams, the desire for a miracle to happen and for it not to be something that somebody is facing. When there is an acceptance that death is going to happen, that allows people to move on in positive ways and talk about real things that matter. I remember many, many years ago, when I first started working in this area, we still had a situation where doctors would not always be honest with patients or families about the fact that they were dying. And everybody got involved in this myth, this pretense that something else was going to happen. And it meant that people didn’t talk about real things. They didn’t laugh and cry together. And I was very struck about, when I used to do work in hospices, for example, that the families who actually faced the reality of death, sure they cried and looked upset with each other, but they laughed a lot. They still actually talked about realizable dreams and prospects. Whereas those who actually just were in complete denial about it, they knew they were dying really, but they didn’t have the same important conversations with each other.
So, in our grandmother’s days, death really was part of life, very few children lived beyond five years. Many died in infancy, infectious diseases killed lots of people. Death was more of a day-to-day thing and people talked about it. We’ve now got into a situation where no one talks about it and then the patient becomes almost a talisman for everyone else, as long as they can actually not talk about it, this person won’t die. And we have to talk about it more.
And we’ve been running lots of programs, until COVID of course came along, where we had a program run with the Wellcome foundation called the Departure Lounge, and we opened up in shopping centers and it looked just like a travel agency. And you went in and there were departure boards and luggage and everything. And it wasn’t obviously a travel agency. It was somewhere that people of all ages could come and just talk about death experiences. And we had some extraordinary experiences ourselves, actually looking at what families had always wanted to talk about but were denied.
Chris Riback: The difficult conversations, the conversations talk about uncertainty and maybe not ambiguity so much, it’s not so ambiguous, but it certainly leads to uncertainty. Dame Lesley, thank you. Thank you for your conversation. Thank you for the work that you have spent a career on for patients and doctors and the concept of quality of life. Thank you.
Lesley Fallowfield: Thank you, Chris. And thank you everybody who may listen to this for all your donations that allows all this wonderful research to go on. Not just mine and my team, but everybody else who’s funded by BCRF. Thank you so much.
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