How can prostate cancer patients work to become partners in their care? Expert Dr. Tomasz Beer discusses “shared decision-making” in prostate cancer care and offers his perspective about the patient role in treatment decisions.
Dr. Tomasz Beer is Deputy Director at OHSU Knight Cancer Institute. Learn more here: https://www.ohsu.edu/people/tomasz-m-beer-md-facp.
The term “shared decision” is being used lately when talking about patient care. What does this term mean for you?
Well, you know, at some level in my view, at least in the United States, virtually all medical decisions are shared decisions. We have a culture of advising our patients about their options, perhaps recommending a course of action, if it’s clearly preferable in our judgment to other options, but really involving patients in those decisions and taking serious consideration of the patient’s personal preferences and values.
And oftentimes in cancer care, especially when we’re dealing with noncurative treatments, treatments that are designed to keep the cancer at bay, perhaps shrink it, prevent or reduce cancer-related symptoms, protect quality of life, we really need to understand each individual patient’s willingness to undergo treatments, take on treatment-related risks, and their personal priorities. Is it their goal to live as long as possible and accept more risks? Is it their goal to focus on the quality of life today and avoid risks to the extent possible and only take them on when they’re absolutely necessary?
These are the kinds of discussions that we have with patients every time we consider a treatment change. So, to me, shared decision-making is really what we do with every patient and almost every visit. In some cases, it’s particularly important because there are areas in medicine where there’s really equipoise, and we don’t have a very clear recommendation one way or another.
Prostate cancer screening is an example for that. We all would dearly love to believe that early detection of prostate cancer is helpful, but early detection of prostate cancer comes with its own harms, the risk of overdetection, overdiagnosis, overtreatment, all because we pick up not just the aggressive cancers but also very slow-moving cancers that are not life-threatening. And so, folks undergoing cancer screening really need to know upfront what they’re getting into and make a decision about their view of the balance between the risks and the benefits. That’s a classic example of shared decision-making.
What is the role of the patient in making treatment decisions?
Well, I think that the role of the patient is absolutely critical. I mean, they’re the ones receiving the therapy, and there are many things that we look for from our patients. To me, the most important is a clear understanding of their options and the reality within which we operate, having a set of hopes that are forward-looking, hopeful, and optimistic but also grounded in reality, so that good decisions can be made based on reasonable expectations. No. 2, a clear and honest articulation of the priorities, and that can be difficult.
You know, sometimes it’s hard to balance priorities. We obviously want to live as long as possible with a good quality of life. But what if the choice is better quality of life with a shorter lifespan or a longer lifespan but more side effects? And that’s really hard to sort out for some folks. And in my experience as a physician in the trenches, I can also tell you that sometimes the goals of the patients and the goals of their loving spouses and families are a little different.
And trying to help us – as physicians, our primary responsibility is to address the patient’s goals, but we all know that what we really want for our patients is a consensus of all the people they love that are important to them so that everyone can be supportive and on the same team. Those differences can be really stressful.
So, another thing that I look for in my patients and try to help with is building a family and friend support network that’s aligned, that’s on the same team, really. And then really strong communication with the physician or the provider about how things are going, letting us know about side effects honestly, and many people do that, but some people are afraid to share side effects for fear that their treatment might be taken away. And that honest, straightforward communication is really important for the best decision-making. And then, you know, of course, knowledge about the treatments and understanding of what we’re talking about is helpful, but actually, to me, it’s not the most important thing.
Having read the detailed papers on docetaxel chemotherapy while helpful, is not as important as having a really clear understanding of one’s values and priorities and a candid assessment of one’s quality of life and the ability to share that with a physician. I can cover the technical medical stuff, but what I can’t do is guess what’s important to my patients.