Your voice shared decision making

Chapters

[00:00] Introduction
[00:41] A Personal Story: The Importance of Patient Goals
[03:49] Why Shared Decision-Making? Evidence & Philosophy
[06:46] The Spectrum of Care & The Myeloma Treatment Landscape
[10:17] The Expert Patient & The Expert Team
[11:44] What is the Shared Decision-Making Process?
[13:29] Pitfalls of Not Collaborating: Two Cautionary Tales
[16:28] How to Prepare for Shared Decision-Making
[19:31] Key Questions to Ask About Treatment
[21:05] Practical Tips to Get the Ball Rolling
[23:36] Conclusion & Final Empowerment Message
[24:18] Q&A: Applying Shared Decision-Making to a Case Study

Transcript

[00:00]
It is my pleasure to introduce our next speaker, who is Dr. Nathan Close. He is a clinical and laboratory haematologist in private practice at Greenslopes Private Hospital. He has experience in administering various treatments such as chemotherapy, immunotherapy, and cellular therapies, including bone marrow transplantation and CAR T-cell therapy.

Dr. Close is an active investigator in bispecific antibody therapy for myeloma. He works with a focus on open communication to deliver expert, personalised care to patients in Brisbane and further afield. And that’s why he’s perfect to present for us today on ‘My Voice: Shared Decision-Making’. Thank you, Dr. Close.

[00:41]
Thanks so much, Kath. Just triple-checking I’m coming through okay. Wonderful. Technology is great when it works. Thank you so much for having me. It’s a real honour, and I think, you know, obviously some great quality of speakers and just really great to assist Myeloma Australia’s wonderful work. So thanks for coming, thanks for listening, and especially thanks for having me.

I’ve been asked to talk about shared decision-making, and it’s something that I’m really passionate about. We’ve heard about some options already available to you through risk assessment, and hopefully this just continues that conversation. I thought I’d start by relating a quick story and start with some AI-generated feet, which you can tell ’cause the toes look really weird.

This represents a patient of mine that I had when I was a junior doctor in training. This fellow was elderly. He had medical problems including heart failure, a leaky valve that didn’t work, and had an awful infection on his toe. And it wasn’t responding to antibiotics, and it was getting to the stage where we’d have to do an operation to chop off his toe and probably most of his foot to save his life.

But unfortunately, because of his medical problems, that sort of operation would be a life-threatening operation, and there’d be a decent chance he wouldn’t come through. So just an awful rock-and-a-hard-place kind of situation. As a junior doctor, I was mainly responsible for running the ward and looking after this fellow, and we just couldn’t come to a decision together. Should we do the operation? Should he not do the operation? We went back and forth.

It wasn’t until a very helpful nurse came by one day, and I overheard a conversation. They were speaking about his dog at home. We spoke a bit more and got me to asking, you know, rather than “do you want an operation or not,” I asked him, “Well, what are your goals? What actually is really important to you going forward in the next couple of months?”

It turned out he, you know, his poor dog was being looked after by an elderly neighbour. He wanted to get home and see his dog one last time and take him to the beach if he could. He wanted to get some paperwork sorted at home, like his will and some other things. So really, what was important was that he could get home for a couple of days, and then if he didn’t survive in the next few months, that was okay. His quality of life was decreasing.

So it completely changed the conversation. Rather than asking a medical question—”Do you want surgery?”—it came to asking a different sort of question: “What’s important to you?” And then, how could I make a medical programme that kind of met those goals? Perhaps that should have been more obvious to me as a doctor throughout training, but for me it became very clear that my role is not to administer treatments to diseases. My job is to look after patients. A key part of that is finding out what’s important to people and using our expertise as doctors to make a treatment plan that meets those goals, rather than treats a disease in a particular or arbitrary sort of way.

So that’s a bit of my background and why I’m so passionate about that, and I bring that sort of philosophy to the way I look after myeloma.

[03:49]
Just a couple of quick disclaimers. Obviously, you’re well aware comments regarding myeloma and their different treatments are general and may not apply to your situation. These are my opinions. This is not the best way to practise medicine or myeloma care. You, your doctors, and your loved ones may disagree, and that’s okay.

Shared decision-making, as you can kind of tell by that little intro, does involve some really big and difficult questions. Sometimes it’s easier to ask, “Do you want lenalidomide maintenance or not?” versus “What’s important to you?” Those are really tricky and big questions and can bring up some really confronting future issues. So do the journey with your support network—that includes your family, it includes your GP—and make sure you seek help along the way.

In this quick talk, I’m just going to aim to cover four questions. We’ll spend some time on the first two: why shared decision-making, and what is shared decision-making? We’ll run through some practical things about how you can prepare for shared decision-making with your haematologist, and how you kind of get the ball rolling and get engaged if it’s not already happening.

[05:35]
In terms of making a case for shared decision-making, well, of course I wouldn’t be a haematologist doing a presentation if we didn’t get some evidence in there. Shared decision-making is when we do patient-centred, personalised care. This is care based on what’s important to the patient, rather than a disease-centric focus.

There’s some good-quality evidence in this space. This is one particular paper focused on multiple myeloma, and there was evidence that it resulted in increased patient confidence, satisfaction with the treatment decisions, increasing trust in the healthcare team, increasing treatment adherence (obviously you’re more likely to take the medication and continue taking it if you realise why it’s so important and why it meets your goals), improved health-related quality of life was common, and even a signal suggesting improved physical health outcomes. So these are not just a nice idea, but it’s a good medical option for care that results in improved outcomes.

The stakes are high. We are dealing with, at the moment, an incurable disease and the journey is long. The options are complicated, and I just don’t see any other way to do it. Shared decision-making is, in my opinion, the only way to manage this disease, given the trajectory that we face together with it.

[07:08]
So, if I say it’s the only way of doing it, well, what are some other ways? In terms of approaching your medical appointments and your medical care, I’ve kind of created this sort of spectrum, which is a bit arbitrary but hopefully gets the point across. At one end of the spectrum you’ve got a completely autonomous, self-directing patient. At a real extreme, you’ve got a patient who doesn’t even see a doctor; they’ve made their own decisions for their healthcare and they’ll figure it out. Or, if they’re engaging with a doctor, they’re going to tell them what they’re going to do after Googling.

At the completely other end of the spectrum, you’ve got an authoritarian healthcare provider. There’s no exchange of information. They’re here to deliver the treatment plan to you, and your job is a passive participant in that process to say, “Yes, doctor,” and do what is given to you.

Shared decision-making sits within this spectrum. Obviously, there are preferences that you or your specialist may have one particular way than the other. As a personal note, I sit a lot more towards the patient autonomy end of the spectrum. I love engaging with my patients and helping them make a decision—not to place the burden on them, but so that they feel empowered with the decisions that they’re making. But shared decision-making is anywhere within this spectrum.

The other reason why shared decision-making is important is because, as we said, the decisions are complicated. Just as a really quick summary, this is not quite a comprehensive list, but in terms of the treatment options available to us in 2025—of course highlighting clinical trial participation—in terms of PBS reimbursed medications, we’ve got several triplets. We’ve still got autologous stem cell transplantation, multiple lines of novel agents available, not including the chemotherapy salvage options and TGA-approved but not PBS reimbursed options.

We do have several, including the Cilta-cel (CAR-T), which is obviously progressing in its federal funding reimbursement status, as well as multiple bispecific antibodies. We do have future therapies coming, and you’ll hear more about them at this conference and elsewhere. But essentially, we’ve got a lot of options to choose from. What that means is two things: one, we need to engage with our patients to help decide about them; but the other is you’re going to need your specialist’s help. Honestly, we do our best to stay on top of these things ourselves, but from a realistic point of view, it’s going to be very difficult for even an expert myeloma patient to try and keep up with what’s going on, because there’s a lot going on.

[10:17]
So, why shared decision-making? Your healthcare team should be the experts in the myeloma and the treatments available, but they’ve not encountered you before. You’re the expert in you. As we’ve heard a lot today already, every patient with myeloma is different. I guess I just wanted to highlight here, this is more than just the biology of the myeloma. You’re your own case of myeloma, but you’re the expert in you. You’re the only one who knows what you want.

The treatment plan shouldn’t be aimed at treating myeloma. The treatment plan should be aimed at meeting your goals. Without discussing the disease, the treatment options, the potential side effects, assumptions can be made about those goals, leading to mismatched goals and suboptimal outcomes.

Everyone is different, and so don’t assume that your healthcare team knows what you want and what’s important to you, and neither should your healthcare team assume that they know what you want and what’s important to you. Especially early on in the treatment course, of course efficacy and good outcomes, deep responses, etc., are very common treatment goals, but they’re not the only goals. Thinking about other things that are important to you is a key part of that shared decision-making process.

[11:44]
So, hopefully I’ve made a bit of a case for why we should be doing shared decision-making. This is just a bit of a summary on what that process involves. In my mind, shared decision-making involves a number of steps.

The first step is having an expert healthcare team who understands the treatment. That’s going to include your specialist, your myeloma specialist nurses, your other support and information team, including Myeloma Australia. That’s the first step.

The next step in the process will be engaging with an expert patient who understands themselves. That means someone who understands their treatment goals and their personal values, and that’s your half of the equation. Now, you can have those two people present in a room, but if they don’t share their knowledge with each other, that is not going to be helpful.

So the third step in the process is a knowledge exchange. This takes time. So being realistic about some time for education—to be able to learn about your disease, the options available, the potential side effects—but also giving your doctor time to understand you, listen to you, and what’s important to you is that third part of the process.

Once there’s been sufficient time to exchange knowledge—and obviously that’s an ongoing process—you’re then able to design a treatment plan which meets the goals. It’s important that that is not done with shortcuts. I think, just to highlight, some cases that might be examples of what happens if we take a shortcut one way or the other.

[13:29]
A classic one is doctors making a treatment plan without considering the patient’s goals. That can result in a reduced quality of life. Just as a quick story, there was excellent data, especially back when we only had doublets available, that the number of doses of bortezomib you got was directly related to your outcomes with the disease. So maximising and using every single dose you could get on the PBS was really important.

We had a patient that, unbeknownst to us, was also a concert pianist. When we actually sat and listened to him, he wouldn’t mind, you know, 12 months less progression-free survival if he could continue to play his grand piano for his grandson. Making assumptions that a maximised progression-free survival was what was most important to this patient would miss the potential side effect of neuropathy that could occur with progressing doses of bortezomib and therefore not meet his treatment goal. So that’s how doctors could make a shortcut and assume and have a poor outcome.

Similarly, it’s also possible to make assumptions from a patient’s perspective. This is not getting the information you need from the expert healthcare team in order to meet your goals. So making assumptions about side effects or outcomes from certain treatments without actually knowing what the possibilities are.

I’ve had the privilege of meeting a wide range of patients from lots of areas of life and different backgrounds and health values. It’s not uncommon to come across patients who, before they’ve even heard about myeloma treatment, will be refusing treatment. “I don’t want chemotherapy. I don’t want to lose my hair,” this kind of thing. But actually, when you engage with these people and you hear what they want—they want to be healthy, they don’t want their health to be affected, they’re worried about particular side effects—when you run them through what to expect on treatment, you can actually come up with a treatment goal that aims to meet their goals. You’ll find out that the shortcuts they’re taking by refusing treatment and not understanding is actually not meeting their goals worse than if they were to receive the treatment, which would actually maintain their health in a better way. So just to highlight a couple of pitfalls if we don’t do shared decision-making.

[16:28]
Hopefully I’ve made a bit of a case about why we need to do shared decision-making and what it involves. In terms of participating in the process, first I’ll talk about some aspects that you can do to prepare.

The first is not an easy one, and one that I recommend you do with your loved ones and other support network, is taking time to think about what’s important to you. This may be fighting the myeloma with everything you’ve got, putting up with any potential toxicities to get the deepest and longest response possible, but there may be some other things that come up in that conversation as well.

This also includes what quality of life means to you. Again, these issues take on a bigger role as we progress in the myeloma journey and deal with people later on in the course with relapsing disease. Quality of life is different to different people, and that includes potential side effects, independence, and other things.

Really being honest with yourself and asking the question: Does treatment effectiveness and quantity of life really trump everything? And are there more important things in life than squeezing every month of progression-free survival out of a treatment that’s possible?

I’ve just given some examples here: Are there certain activities or lifestyle considerations that are important to you? That might be being able to continue to work, taking time off to travel, having time off treatments for other reasons, and side effects that in particular may affect hobbies and passions.

Finally, it’s just an incredibly vulnerable position to come to an appointment. There’s the stress of receiving your results—the ‘results day’ anxiety. There’s the anticipation of the treatment and other side effects. There’s the business of hospital parking and all of that. But just being ready and set in your mindset that, as we heard just before, we’re here for you. There’s nothing more important on our day as your myeloma specialists than coming and listening to you and hearing about what’s important to you and your treatment goals. So being prepared in your mindset and in your attitude to ask questions about the treatment plan and mention those things about quality of life is something you can just mentally set yourself for coming to your appointments.

[19:31]
When you’re trying to start that first part—either at diagnosis or facing a relapse and a change in treatment—there is a bunch of information you need to know about the treatment in order to know if it’s going to meet your treatment goals. This is all information that your healthcare provider and the myeloma support nurse etc., should be able to provide you with. We won’t run through this in great detail, but just some high points:

How effective is the treatment expected to be? How long before we might need another treatment? What are the chances that it might respond at all? How is the treatment given and where is it given—at home, in the day unit, tablets, injections, infusions? What’s the treatment schedule? Do we have times off? Is it continuous until relapse, or is there a defined period and then it stops?

What are the expected side effects and what are the possible side effects? How can I expect to feel whilst having treatments? Can I take a break or miss a dose? What comes next? What happens when the treatment stops working? Is this clearly the very best option, or is it equivalent to potentially other options? Should we be weighing up multiple options together?

[21:05]
Having taken some time to prepare for shared decision-making and think about the type of questions you need to know and the information you need to know to engage in that process, I thought I would just highlight a couple of practical points about how you actually start this process. I do acknowledge it can be difficult to get the ball rolling if that’s not how you feel the conversation has been up to this point.

I will say the main responsibility rests with us. We’re humans as well, and there are busy clinics and the stress of dealing with stuff. It’s no excuse; as we’ve said, there’s nothing more important about the care we provide than you. You are the reason why we’re doing this, and we’re not treating your myeloma, we’re treating you. We have a saying: “What matters to you matters to us.” The key onus is on your healthcare providers to set that tone and get the ball going. However, you also are there and need to prepare and engage in that process. Taking the time to prepare is a key part of what you can do.

The other thing you can do to assist is to bring your support persons with you to the appointment. As I said, it can be hard to remember your list of things. Having that extra brain with you can help engage in that process a bit better and be a bit more of an advocate for you.

Finally, as you can tell, these things take time. From a really practical perspective, sometimes not every appointment will we have time to discuss all of these issues. So just flagging with your healthcare team in advance that there are some bigger-picture things you’d like to engage with helps. If you are in the public system and you know you’re dealing with registrars or junior doctors and then you’ve got other times where you’re seeing the consultant, trying to flag with the team that you’ve got some bigger questions to run through prepares them so that they’ve got the time to allocate to you if possible.

Just to reiterate this point: feel empowered. We’re here to treat you and your myeloma.

[23:36]
That was it. That’s all I had to run through today. Sorry, a very intangible sort of talk—not a lot of data on myeloma and its treatment—but hopefully some thought-provoking things and just something to empower you and make you think that you are the reason why we’re here. This is a long and complicated journey, and one size doesn’t fit all. The only way I believe to get through it is to engage with your team and help make those decisions together, and that way try and meet your treatment goals as best as possible.

So that was all I had. Thanks very much.

[24:18]
Thank you, Dr Close. That was amazing, and I’m really sure that our members will find that very empowering. I’d like to just probably remind, which you did in your talk, thank you very much, but in terms of being prepared: on our nurse support line, we do have the benefit of time that your specialists and even your nurses in the day unit sometimes don’t have. So please book a call on the support line and we can talk through some of those concepts. What are your values? What are your goals? What can you expect from treatment to try and help you make those decisions, and then go into your appointments armed with that information.

I’m not sure if you’re happy to answer—it’s a question in a roundabout way, almost like a case study—but we had an inquiry from a lady in WA who was diagnosed back in 2019, had CyBorD as her initial treatment, and had a partial response to that. Six months along, numbers were moving, and she went on to DVD at that point and has remained on that on maintenance daratumumab up until now, where now her numbers are increasing again. Her question was sort of, “Where to from here?” I thought this might be a nice point for you to maybe say, “How might she approach that discussion?”

[25:37]
Yeah, that’s a perfect scenario that incorporates clearly we’ve got all the medical information there, and no personal information. So my first approach would be to find out where this lady’s living, how close she is to the day unit, how easy accessible infusional medications are, because we’ve got a couple of options that we’d consider.

Basically, the conversation would be around a lenalidomide-backbone medication regimen that would either incorporate elotuzumab as an infusional medication along with the lenalidomide, or carfilzomib (the other protocol). So we’d approach this by looking at the data together. It’s going to be difficult to compare those trials head-to-head because they are very different settings, but talking about the expected efficacy—and I’d be really positive, a lot of people do really well with lenalidomide-based therapies in these settings for third-line therapy—so be really positive approaching that conversation.

Then talk about elotuzumab versus carfilzomib: what to expect when you’re on those infusional medications. Both are IV. Elotuzumab is fortnightly; carfilzomib in the K regimen is twice weekly, so that’s a lot of hospital contact. There’s maybe co-morbidities with heart stuff we’d consider with carfilzomib. So a wonderful example where we’d then sit down, run through what’s important—like hospital contact times, particular side effects—and then run those efficacy numbers together and see if we can match all that together and make a decision. But there are other treatment options as well, but those would be my two picks.

[27:30]
Yeah. Perfect. Thanks so much. We’ll get that information to her. I’m sure she’ll watch today as well. Thank you so much for your time and for a wonderful talk.
Thank you.