Shared Decision Making: Starting with a person's values and preferences

Summary
In this episode, Dr. Channing Paller and Dr. Alyssa McManamon discuss shared decision-making in oncology and its relationship to whole person cancer care. She shares her journey to becoming an oncologist and her passion for studying natural compounds and whole person care. Dr. Paller emphasizes the importance of incorporating the patient's values and preferences into the treatment decision-making process. She provides examples of shared decision-making in different scenarios, including cases where patients choose to delay or decline certain treatments. Dr. Paller also highlights the role of the care team and resources in supporting patient engagement and encourages thinking outside the box to find compromises and alternative approaches.

Takeaways

• Shared decision-making involves incorporating the patient's values and preferences into the treatment decision-making process.
• Whole person cancer care focuses on understanding the patient as a whole person, not just their disease.
• Shared decision-making can lead to better treatment outcomes and improved quality of life for patients.
• The care team plays a crucial role in supporting patient engagement and providing resources for informed decision-making. 

Chapters
00:00 Introduction and Background
03:41 Defining Shared Decision-Making
09:13 Shared Decision-Making and Whole Person Cancer Care
16:10 Examples of Shared Decision-Making
23:15 Team-Based Care and Resources
25:19 Maintaining Muscle Mass during Hormone Therapy
26:19 Summary and Closing Remarks

Resources

• Personal Health Inventory (PHI) tool 
• Article: The Case for Whole-Person Integrative Care link (written by Dr. Wayne Jonas)

Connection to Healing & Cancer book:  Chapter Two: Engaging the Person in Cancer Care

Check out the book: "Healing and Cancer: A Guide to Whole Person Care"
Visit https://www.healingandcancerbook.com/ for more information.

Connect:
Twitter: @DrWayneJonas
Facebook: Dr. Wayne Jonas
Instagram: @drwaynejonas
LinkedIn: Dr. Wayne Jonas
LinkedIn: Alyssa McManamon

Visit Healing Works Foundation www.healingworksfoundation.org for more information.

Dr. Wayne Jonas is a board-certified physician and Dr. Alyssa McManamon is a triple-board certified hematologist/oncologist. The opinions expressed on this show are those of the hosts and guests and do not necessarily represent the views and opinions of their places of employment, the Department of Veterans Affairs, or the United States government. The opinions expressed on this podcast are meant for entertainment and education and should not be used to diagnose or treat any medical condition nor should they be used as a substitute for medical advice from a qualified, board-certified practicing clinician. Dr. Wayne Jonas and Dr. Alyssa McManamon have no relevant financial disclosures.

Transcript

Please note that this transcript is produced electronically and may not be an accurate representation of what was said. It may not be reproduced, edited, altered or modified in any way without prior written permission. Any use of quotes or excerpts from this interview requires explicit permission from Healing Works Foundation. Please contact us at healing@healingworksfoundation.org if you would like to use any part of this transcript for quotes or other purposes.

“How Healing Works with Dr. Wayne Jonas & Dr. Alyssa McManamon”

Shared Decision-Making: Starting with a person's values and preferences

Alyssa McManamon (00:00.698)

Welcome to another episode of How Healing Works. I'm Dr. Alyssa McManamon, a practicing hematologist-oncologist and co-author of Healing and Cancer, a Guide to Whole Person Care. Today we'll be discussing the topic of shared decision making in oncology. My guest is Dr. Channing Paller, an oncologist at Johns Hopkins University who specializes in the treatment of prostate cancer. Before we begin exploring the shared decision making, Channing, can you provide your journey to where you are today?

How did you decide to go into the field of oncology and how has whole person care become routine and regular in your practice?

Channing Paller (00:36.906)

Thank you, Alyssa, for having me on your podcast today. This is a wonderful opportunity. Those are two very different questions, which actually are related. So I am excited to share. So my journey dates back to, I would say, seventh grade when I was learning about the environment. I was learning about nature and how some of the products we have in nature are able to be cancer drugs.

And so I was in seventh grade around the time that Taxol came into development for ovarian cancer. And so my interest in the rainforest was just that, how we could get compounds from nature to help people live as well as they can, as long as they can. And really looking at the whole person back then.

Right? It's ironic that it was so toxic. And I try to avoid toxicities in my patients when at all possible. But that was sort of my first introduction to the world of oncology and seeing how the world around us can help heal us. As I explored my journey and my training in medicine,

I began to learn that there are different drivers of different processes, right? So, you know, if we are sedentary and eat too much, we may start to get aches and pains. And it's really important to get outside of nature and exercise and eat healthy and sleep. And so I began to see different types of patients that benefited from these just natural daily habits.

I also got the opportunity to work with wonderful oncologists who study prostate cancer and saw that patients were using pomegranate juice, patients were using pomegranate extract, patients were using resveratrol to help control their cancers. They didn't know if these things worked or not. I saw this as a wonderful opportunity to say, hey, let's study these compounds rigorously. Let's study

Channing Paller (02:40.106)

all of these things that people are doing rigorously so that they can be respected as either helping or not helping, but we know what they do as well as any other compound out there. Today, I have a whole food plant-based diet trial for prostate cancer patients. I've studied vitamin C, I've studied mistletoe, I've studied pomegranate, I've studied muscadine grape skin. All of these things are really important to know, are they helpful, are they harmful?

When to use them, when not to use them? And so I think it's really important that we study all of these compounds and all of these things that we do to help people do better. We now know meditation helps people's mood. We know their MRI changes with meditation, right? So that we know acupuncture makes a difference. So just really rigorously studying all of these whole person care activities is something that I love to do to show that they're just important in their own way as other things that we do to help cancer patients.

Alyssa McManamon (03:41.937)

That's great. I love how it connects back to your passion that started when you were in seventh grade. You know, the beginner's mind that you had at that time, like you still have that because you're saying we have lots of unknowns and how do we study these to make it, you know, really support people's maybe interest and actually show them what's safe, what's useful and what's maybe not safe or not useful. And I think that's really it just harkens back to kind of, you know, your passion bringing it forth now. So how so then together,

you know, in your journey to get to here. It sounds like we have a clear path that you took, but you know, there were a lot of meandering ways to get there. And so now in your practice, you still practice general prostate cancer medicine as well. Is that correct?

Channing Paller (04:26.858)

That's correct. So I'm a GU (Genitourinary) medical oncologist. I see patients two days a week and I put about 25% of my patients on clinical trials. I'm the director of prostate cancer clinical research at Johns Hopkins. So I also offer patients phase one clinical trials, phase two clinical trials and phase three clinical trials of the new immunotherapy we have, a B7H3 target. We offer neoadjuvant trials to help cure patients, more patients. We offer...

targeted therapies based on your genetics. We offer theranostics, so radio ligands that help fight your cancer. And so, yes, I have a large menu of different ways to help people treat their cancer, all the way from, as I mentioned before, diet and natural products, all the way to targeted drugs from drug companies.

It's a great, I feel, I love my job and my patients give me ideas every day. I had a patient about three years ago ask me, hey Channing, why did I develop the secondary small cell cancer?

Why did I, I just had slow growing prostate cancer. What happened? Why did I develop lung cancer? Why did I develop these other cancers? And so we did a genetic test on him. So I have a platform called the Promise Registry where I screen 5,000 men for free and give them free genetic counseling. And then if they are one of the 500 with mutations that they were born with, we follow them for 20 years. We match them to clinical trials. We let them know about FDA approved therapies.

And this gentleman who asked me this question, he said, come on Channing, talk to your friends, talk to your colleagues, um, figure out why this happened to me. So it turns out he had an MUTYH mutation that he was born with. And that's often associated with colon problems. But what we learned from my looking first in the Promise Registry, and then there was a bigger data set with foundation one, we were able to see what type of mutations develop from that first mutation and what

Channing Paller (06:39.146)

predisposed them to him later and learn for other patients. So I really find this whole process interesting, whether it's developed by a drug company or by nature. And so another study that I've been doing with my muscadine grape skin is seeing who might benefit from antioxidants. And so we learned early on from the physician's health study that people with a certain genotype, a certain mitochondrial enzyme, superoxide dismutase,

about 25% of people respond better to antioxidants and it helps them do better longer and not die from progressive prostate cancer by having more antioxidants. And this was done in the physician's health study many years ago. So there's lots of opportunities here. Just we have to ask the right questions.

Alyssa McManamon (07:27.057)

Yeah, that's great. So it's the best of both worlds basically where you work and you get to offer everything from kind of like you said, healthy diet and following that intervention all the way through all the new cutting edge. So it's great. And I think that's really what integrative health is all about, being able to offer your patients kind of the whole gamut. That's great. You know, we're here together today to talk about shared decision making specifically in oncology. And can you define what shared decision making means to you in your practice?

Channing Paller (07:54.814)

First of all, we all need to start with where the patient is. So we need to ask them what their thoughts are about where they are and acknowledge that there is a decision to be made. I have patients that come to me and absolutely do not want to go on hormone deprivation therapy for their prostate cancer until they have a problem. And so it is a shared decision to be made. And some people absolutely want to go on therapy to avoid

cancer spreading to their bones and their liver and their lymph nodes. So it's a shared decision in terms of what are the treatment choices and how do I want to approach this? So we together acknowledge that we're here to solve a problem and that there's a shared decision to be made. We know that I have some data to share with them and they have some data. They know how their body's feeling. They know their likes and dislikes. They know their risk tolerance. Are they a high risk or low risk?

They know what they will and won't tolerate. And so together, we come together and incorporate the patient's views and my knowledge and education for the patient on what side effects may happen, as well as what benefits may happen with different therapy approaches. And together we come up with a shared decision in how to approach the treatment for their prostate cancer.

Alyssa McManamon (09:13.041)

Yeah, and I love that you started with the example of somebody who knows that they right now don't want to do anything. It doesn't mean they can't do anything later and we don't abandon them, right? You're staying there with them. You're saying, I'm here with you. I'm hearing what you say. I've given you all the information and I'm confident that you heard me and that you're understanding and I respect your decision. And I think that's sometimes where things fall apart, you know, where people don't feel respected or they don't feel heard. And, and,

the fact that you're there for them kind of regardless, knowing that they have all the information at hand, I think is really important. So there's a lot about education is what I hear you say.

Channing Paller (09:47.914)

I trust and love my patients and know that they also can only tell me what their body's feeling. Right? So we always have three rules, how they feel, what their labs are. And if either of them are acting up a little bit, we image. And so we have all that data to work from. Oh, shoot. Is that growing and pushing on my ability to urinate or move my bowels? Oh, shoot. Is that really too big? And we need to do something about that. Right? So we can really work together with real data to make a good decision.

Alyssa McManamon (10:19.185)

Yeah, and that's the beauty of, yeah, the objective data that you can share and you can both see. You can both see a number. You can both see a picture and you can explain what it's showing. And having the black box of we don't know be as small as possible so they can make a good decision with you, sounds like. That's great. So incorporating really the values of the patient into the decision making process is so important because it not only acknowledges their individual autonomy, but it also gets to the root of whole person care,

which is the attention on kind of what matters to the person, not just what's the matter as we were just discussing. So this is a great segue into my next question, which is how does this topic of shared decision making relate to whole person cancer care?

Channing Paller (11:30.57)

One of the ways that I see the shared decision making relate to whole person care is...

understanding them as a whole person and not just their disease. So each person is different and has different stressors and different comorbidities, different preferences and different decision treatment processes. So for example, I have one gentleman who was on the heart transplant list, but had growing prostate cancer. It was small, but it had metastasized to a lymph node. And he was very upset about this and wanted his PSA to be undetectable and wanted his lymph nodes to be gone. So we were in a tough situation. They wouldn't take him to treat his heart until we took care of his prostate cancer. And yet his prostate cancer was growing slowly and not that aggressive. So we discussed proactively with both the patient and the

cardiologist about what the best way forward was. And for this patient, although we could have done nothing or we could have done continuous hormones for metastatic disease, we came up with a short-term plan where we did six months of hormone therapy and we radiated the lymph nodes that were enlarged. And so he was able to have an undetectable PSA with no evidence of cancer on his scans for two years. And what happened during those two years was quite remarkable.

They realized that his nausea was from his blocked vessel. And so when they saw that he was in remission per se, or his disease was quiet, they were more willing to be more aggressive with his heart disease. And so what they did is they re-cannulized a vessel and then all of his symptoms and his nausea and his...

Channing Paller (13:31.958)

fluid in his feet and his lungs all resolved over the next three months because his heart was able to function better. And so that was really a beautiful example of this was a guy who works in DC, has a very stressful job, and all of the stars aligned so that now he's thriving and handling challenges in his job with grace because he feels better, his heart's taken care of, his prostate cancer is quiet, and he's ready to take on life's new challenges. And so I think that was an area where...

Not only did I work with a patient on his wishes, but also with the other physicians to help him manage his stress, manage his diet, manage his heart, manage his fluid status and salt, manage his sleep, and manage the risk profile of prostate cancer and the side effects from hormone therapy, which can make you gain weight and lose muscle. So I really was...really thrilled at how all of that worked out.

Alyssa McManamon (14:39.345)

Yeah, I think that truly does speak to shared decision making because if we think about it as a method of care and that's something, that's not a term I coined, but Victor Montori out of Mayo, he talks about it as a method of care and to get to kind of to address a thorny problem, that was a thorny problem, right? He had this cardiac issue that had to be resolved and then...

to get past that with maybe a less than conventional approach that wasn't, you know, not using conventional means, it was using conventional means, but in a different way than maybe otherwise would have been required if he hadn't had the cardiac issue. So getting him to the next place in the trajectory of his health, I think that really speaks to shared decision making and the team approach. I mean, you know, it takes time, but it was worth it, right? That was something that actually, those are extra conversations, but they were, they had to be had. It's, you know, yeah, a great example.

So I appreciate your emphasizing that the patient has a say in their treatment plan. In that case, he wanted his PSA undetectable and the lymph node gone. And in a previous episode we actually had with Jasmine Souers, she's a breast cancer survivor and a patient advocate. She and I discussed how it's important for the clinician to be certainly forthcoming with what the treatment options are, the side effect profiles and resources, but even more important for the patient to be able to say no, opposite to that example we just had

and to ask for even different options. And so do you have any specific examples of how shared decision making has worked in a case like that where somebody maybe said no, but still had a good outcome?

Channing Paller (16:10.634)

Sure. So one of the areas of my research is biochemical recurrent prostate cancer. So this is where the PSA is rising, but we can't find it anywhere on scans. And oftentimes the PSA is rising really slowly, once every 12 months. And it will be a long time before the prostate cancer is even a problem.

But those patients are super, super upset that their PSA is rising and they feel like they have a ticking time bomb inside their body and they want that PSA to go down. Even with education that this will take a long time to progress. Those are the patients that don't need immediate hormone therapy who have already had surgery radiation to...

try to cure them, but their PSA is still spreading and still sort of hiding somewhere in their body, probably in their lymph nodes or their bone. And so that is the space where we did the pomegranate trials and the muscadine grape skin trials. We also do some immunotherapy trials there, and we also do some short-term hormone or targeted therapies there. So that space is one where we allow patients to say, no.

I do not want hormone deprivation therapy. I do not want muscle loss. I do not want weight gain. I do not want increased high blood pressure. I do not want erectile dysfunction. I want a better quality of life. I want to be able to go hiking with my significant other. And this is a place where I can really support them to say, hey, actually, the standard of care is to watch, not do nothing, but watch.

Channing Paller (17:50.324)

or do intermittent hormone therapy. And so another option we can do if you want to do something is do one of these clinical trials where we are working on your diet and exercise and maybe even taking a supplement to see if it makes a difference or a gentle therapy to see if it makes a difference and makes your PSA go down.

So I'm very much understanding of working with a patient when they tell me no to say, okay, let's think about understanding you say no to this. When would you or might you change your mind? Is it only when God forbid the cancer spreads and you're in pain or is it before that? Right. And so we help figure out where patients have their own boundaries in terms of when they want to start something or not.

Alyssa McManamon (18:43.857)

Yeah, yeah. So helping people kind of do what makes sense to them with that, I guess that guidance that you know when it's safe to do so that you can wait. And I think the part about the clinical trials is so beautiful because it gives people, I mean, they're contributing to others, you know, in terms of anybody who enrolls on a clinical trial to assess one of these natural products or one of the other things that you've mentioned, they're actually helping other people down the road who come after. And that's...

patients want to give back. And I think that's the part about clinical trials that sometimes, you know, if you've never been on one or if you're not at a place where you enroll patients in clinical trials, you don't get a chance to see that lovely side of it where people really feel they're contributing. And I'm sure you've had patients who know they've contributed through some of the time they've spent.

So for clinicians who are unsure how to engage a patient in the decision making process or who maybe encounter a patient who's more introverted or doesn't seem engaged, how do you suggest the cancer care team can encourage the patient to have a voice in their care and their health?

Channing Paller (19:49.322)

That's a great question.

Really asking questions and reading and being informed is really critical. One of the goals of my Promise Registry is to educate people about not only FDA approved drugs, but the standard of care. So we have a trial out there also in this biochemical recurrent space for people with an MSI gene mutation. We offer them a pharmaceutical drug, nivolumab to help slow their cancer with minimal side effects. Right. And so finding resources is really helpful. So your Healing and Cancer book website is really helpful. The Healing Works Foundation also NIH has a good website. ASCO and Society of Integrative Oncology have shared guidelines that speak to some of these whole person care goals. We also have...

a lot of this on the Sloan Kettering website in terms of natural products that people may be studying to share the data with their oncologist. Really, it's encouraging a conversation between the different care providers and doing the work to say, nope, my supplement will not interact with the medicine you're doing, so it's okay. Or, okay, I will not take antioxidants while I'm getting chemo or while I'm getting radiation, but I will right afterwards. So, thinking about when and how to support the patient and still let everybody in the team work together to be the most effective that they can for the shared goal of helping the patient do better. So I really think it's important to have

Channing Paller (21:37.162)

other people in the team that are advocating from the patient's perspective. So we have a clinical pharmacist who meets with our patients and looks for drug-drug interactions or herb-drug interactions. We have a patient navigator that meets with our patients and helps support them. We also have a physical medicine provider, right? So if the narcotics are causing too much constipation, you know, are there other ways that we can help treat the patients pain and symptoms? And so really looking at the person from all of the modalities that we have in the field of medicine, maybe a physical therapist could help strengthen their core to help them do the activities of daily living that they want to do, are really important to take into account patient's values, the patient's preferences, and also the gold standard for their care in the best way that...gives the best outcome for everybody involved.

Alyssa McManamon (22:39.665)

Yeah, I think again this idea of team-based care that you're not saying as the oncologist that you can do all the things. You're just saying these things are all important and I want you to have all the things that address you as a whole person. You know, that it's not just your prostate, it's your whole body that we're dealing with. And I think the pharmacy support...

in particular, people would be sometimes jealous of that, but we need to build programs that support roles that actually have that direct benefit to both you as the oncologist and to the patient also. I think that's really key.

Channing Paller (23:15.988)

I also want to throw out the nutritionist. Of course, the nutritionist is essential to everybody, whatever stage of cancer they're in.

Alyssa McManamon (23:23.889)

That's a great point. Before we go into just kind of summarizing, I really want to just ask you in terms of because I treat a lot of patients with prostate cancer and I so wish I didn't have the list of things we have to counsel them about when it comes to hormonal deprivation therapy or androgen deprivation therapy. Have you seen anyone who just was like, I know I have to do this medicine just in terms of the treatment plan. This is the right treatment plan for me, but I am going to

kind of tooth and nail my way through this in terms of I'm gonna keep on lifting weights and exercising and how well, you know, when somebody's that committed, have you seen, you know, people maintain muscle mass in a way that is inspiring? Because I think I've seen one person like that and I try and tell my other patients about him and I just would love more stories like that.

Channing Paller (24:15.594)

Absolutely, so I didn't mention it yet, but we also have an exercise trial to teach people how to lift weights effectively to maintain muscle mass. And so yes, I have many patients that I work with closely to have a rigorous diet and a rigorous training approach to exercise, to lifting weights a minimum of three times a week in addition to their cardio to help maintain muscle mass. And they do

maintain a very good quality of life and they do still look good and they're quite proud of themselves. And sometimes they look better after they started than when they started because they're working so hard on it and they understand that it is possible to clean up their diet, stop drinking so much alcohol, you know, eat healthy fats and healthy protein and healthy vegetables and healthy fruits. Um, and then exercise in an effective way, doing high intensity intervals and weightlifting. And maybe before they were just walking, um, and they're like, Oh, this is much more effective. Right. And it's not that they have to meet with a trainer three times a week. They can get a regimen and do it themselves. Um, and so yes, absolutely. Many of my patients, um, are rock stars, poster child, whatever you want to call them. I’m proud of many of them. All of them.

Alyssa McManamon (25:33.969)

Yeah, that's great. That's great to hear. I just want to throw that out. I just appreciate that because many people are dealing with metastatic prostate cancer and they do, you know, that it is a cornerstone of treatment to be on deprivation therapy for hormones. And we just, you know, I want to make sure that they know all is not lost and that we have seen patients who have been able to do well.

So, you know, so much of what we've talked about is things that occur in conversation, you know, really signaling to patients that what they say matters, that we have time to listen to them, that we are here and listening to them and reflecting back what we hear. And so I really appreciate you, you know, describing your practice, describing what you have been able to offer patients through trials and what you continue to do for people who are facing prostate cancer.

You know, shared decision making is an important aspect of cancer care, but also connects to whole person care. And it further solidifies the relationship between the care team and the patient with an acknowledgement that the patient plays a role in their treatment plan, just as we've discussed today. So by taking the patient's values and preferences into account, the person is not only empowered, but certainly also they call attention to what matters to them as an individual so we can help them get to more of that. And before we close, is there anything else you'd like to share or anything else?

Channing Paller (26:49.802)

One of my favorite trials, which I'd like to mention, is our bipolar androgen therapy, where I give back testosterone. It's like refeeding a starving child, and it reprograms their cells so that many of them are in shock and...

many of the cancer cells die, and then they're re-responsive to oral therapy. And so we love doing those trials and our patients love them and fly from all over the country to come have them. So one of the other ways is it's a compromise to say, hey, I really need to do a hormone therapy right now, but in the future you will be eligible for this reprogramming where there'll be a period of many months where I can give you a high dose testosterone and you can feel like Superman.

So sometimes it's not just a patient's way or my way. Sometimes we can have compromises of like, okay, for a period of time, we're going to do this. And then for a period of time, we're going to, you know, have all your wishes come true again, right? Your child function come back and all that. Um, and so I would just say in this shared decision making really think about, I think outside the box, right? Think about all your tools just cause they're saying no, doesn't mean they mean no forever. It's just like,

Channing Paller (28:04.874)

That doesn't sound good. Tell me why I should do this, right? It's just sort of an ongoing education on both sides of like, of, hey, let's find a way forward in a path that we all agree with is the best here.

Alyssa McManamon (28:18.353)

Yeah, that's great. Yeah, I think that idea of ongoing conversation is so powerful and appreciate everything that you've shared and the time you've given us to have the conversation today. So thank you so much, Dr. Paller, Channing, and thanks for listening to How Healing Works. Stay tuned for the next episode.

Channing Paller (28:36.458)

Thank you for having me.