Summer:
Hello. My name is Summer Farman, and today we are going to be talking about shared decision making in the treatment of ALK positive metastatic, non-small cell lung cancer. As a patient living with ALK positive non-small cell lung cancer, shared decision making played an important role in my treatment selection upon diagnosis. But before we begin our discussion. I'd like to provide my fellow panelists with the opportunity to introduce themselves. Sarah, can you go first please?
Sarah:
Thank you, Summer. Hello. My name is Sarah Karpen, and I'm oncology physician assistant in California.
Summer:
Thank you so much, Dr Taha.
Dr. Taha:
Hi. My name is Mahdi Taha. I'm a medical oncologist in Southern Florida.
Summer:
Thank you. And Dr Vivek?
Dr. Vivek:
Hi, my name is Dr. Abhirami Vivekananadarajah. I'm a community oncologist in New York.
Summer:
Great. So happy you are all here today for this important discussion. So, thank you. I'd like to begin by sharing my perspective on shared decision making and the important role it played in my treatment journey.
In June of 2020 I received a stage four non-small cell lung cancer diagnosis after months of debilitating cough and shortness of breath. A few weeks later, it was confirmed that I had an ALK positive mutation.
I had always been a fairly healthy person, active and engaged in all areas of my children's life and my work life, and suddenly I was pretty much bedridden, ridden and very ill. It was important for me to discuss treatment options with my oncologist, to know how this would impact my life and try to get me back to my baseline as much as possible.
So once it was confirmed that I had ALK positive I really dove into the ALK positive website and began lurking on the ALK positive support groups to really equip myself with a foundation of knowledge and others lived experiences so I could have an educated discussion with my oncologist. She really also informed me in any gaps that were missing. So not only was it shared decision making, it was informed decision making.
So I told you about my experience, but what does shared decision making mean to you as oncologists?
Dr. Vivek:
So to me as an oncologist, I think shared decision making is very important. When you tell the patient about this, this devastating diagnosis of stage four lung cancer, I think it's very important for the patient to feel empowered and to have the full knowledge to make a decision about their treatment.
Dr. Taha:
I agree. You know, it's really important on that initial consultation that we build a rapport as a patient, you understood you were probably so scared, and it's important to not only discuss what treatment options you have available, but also to build that rapport so that you trust our connection that we have initially.
Summer:
It sounds like you're laying out a lot of different options, and then making a collective best, best practice decision or best fit.
Okay, Sarah, as an integral member of the care team, what is your role in patient care and the shared decision-making process for treatment decisions?
Sarah:
So the first thing that I like to do when I meet a new patient is ask them, what do they want out of their treatment experience? For example, some patients want to know every detail about every treatment and every option available. Some patients say I do not want to know all of that information. It's too much for me. So the first thing that I want to know from a patient is, what do they want from me and how can I help guide them through their treatment experience?
Summer:
So what unique challenges do you face when making treatment decisions and educating patients on next steps?
Dr. Vivek:
I think from the beginning, when the patient is told about their diagnosis, there's that initial denial that you hear from the patient, the family, they don't want to accept it. So I think that's a very big challenge that I face.
Summer:
Great. Thank you. Sarah, do you want to add anything?
Sarah:
I think the one thing I would like to add is how timely it it's very important to make sure that these patients are treated, not only in a timely manner, but our physician colleagues have many patients during the day, so I think that having an advanced practice provider like a Nurse Practitioner or Physician Assistant involved can help with patient education.
Summer:
So with shared decision making, do you feel like this is a newer trend that you're seeing, or do you feel like many colleagues, are using shared decision making.
Dr. Vivek:
I mean, depends on the physician, oncologist, I should say, I have started doing this more and more with the patients. Again, it depends on how much the patients know when they come into the office.
Dr. Taha:
Yeah, it also depends on what type of oncologist you are seeing. There's a difference between a community oncologist and an academic oncologist because of the resources they have within their practice. And so a lot of the academic locations have many resources to assist those patients with shared decision making. And so from a private practice, we rely heavily on our team, such as our advanced practitioners, and our teams within the staff, we may have smaller resources, but you also have the continuity with the people that you've already established a relationship with.
Summer:
So what are the benefits of incorporating the patient into this discussion of their frontline ALK positive treatment plan?
Dr. Vivek:
So to me, as a physician, I think the most benefit is increasing patient compliance, and establishing the rapport, or basically strengthening the rapport, with the patient and the family.
Dr. Taha:
I think educating the patient about what their experience is going to be like, is important. I often get asked, especially in the beginning, am I going to feel it today? Am I going to feel it tomorrow? And so explaining that to the patients is really key. They want to know about their quality of life while they're on therapy, and having those important initial discussions provides the expectations as to what they're going to go through moving forward.
Summer:
That does successful collaboration in during shared decision making. What does that look like to you?
Dr. Vivek:
So to me, a successful collaboration is basically having an open line of communication between the patient, the family, the care team, my care team, and also the other different sub specialists that that we have in the case.
Summer:
Great. Sarah, how about you?
Sarah:
I do want to mention the importance of the care team with the family, with friends, family, whoever is supporting the patient, because they also need to understand what to expect with this process. They're going to be the ones seeing that patient on a daily basis, they're going to be the ones taking care of that patient with their side effects and managing their side effects. So I think success not only is with the care team from a medical standpoint, but the care team from a patient centered standpoint.
Summer:
As a patient, of course, I feel that all care teams should be practicing shared decision making. So what do you think is one key takeaway for providers in the importance of shared decision making.
Dr. Vivek:
Think of the patient as a center. And then basically, every decision, every conversation, has to be centered around them. Because I think that's, that's the number one point that actually, you know, strengthens the relationship between the physician and the patient, the family.
Dr. Taha:
Yeah, key takeaway is having that really robust communication with your patient and their care team, whatever problems they're going to which will arise throughout their process, you have to address and try to see before it happens. And so that shared decision-making process is what helps mitigate those things.
Sarah:
As part of the care team, as an advanced practice provider, I also want to make sure that my colleagues are empowered to stand up for that practice, because I think patients sometimes only want to see the oncologist because that's who they're used to seeing. But it's also important to understand that the APP does play a big role in shared decision making.
Summer:
There are so many benefits to shared decision making when making treatment decisions, and then along the whole process of being on treatment, establishing trust is huge. Rapport, creating open lines of communication, the benefits are endless, and really you can't go wrong when empowering your patients and making decisions together.
Thank you all so much for being here today and for your role in shared decision making. I think that you can just tell in your responses how you handle shared decision making on a daily basis, and it's such a great model and foundation for other providers and patients to follow and to see what successful collaboration and partnership looks like.
