Chasing Milestones: The Importance of Shared Decision-Making Between Oncologists and Patients

Cancer Stories: The Art of Oncology

Listen to ASCO’s Journal of Clinical Oncology essay, “Chasing Milestones” by Dr. Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. The essay is followed by an interview with Govindarajan and host Dr. Lidia Schapira.

As a young physician, Govindarajan shares his personal and professional experiences as a cancer patient with non-small cell lung cancer and the importance of shared decision-making between oncologists and patients.

TRANSCRIPT

Narrator: Chasing Milestones, by Ameish Govindarajan, MD (10.1200/JCO.22.01379)

You always remember the moment your world comes to a halt. Everything comes into stark reality, especially the inane—the socks you were wearing or the type of ceiling tiles over your hospital bed. I lay there alone, a medical student in my 20s, chest tubes emerging from my side. My doctor had just informed me that I had 6-8 months to live. I can still picture those ceiling tiles.

What started as an innocuous, yet persistent, cough proved resistant to routine treatment and eventually warranted a computed tomography scan. A cavitary lesion in my right lung raised the specter of more serious possibilities. A bronchoscopy and video-assisted thoracic surgery confirmed the unthinkable—I had stage IV non–small-cell lung cancer.

As a physician now myself, my mind often returns to that hospital room and how the discussion of my disease, my mortality, and my impending death unfolded. My oncologist at the time outlined my grim circumstances: genomic testing could maybe provide some hope, while palliative chemotherapy would only delay the inevitable, as I would be unlikely to see my next birthday. While waiting for my genomic testing results, I reflected on my relationship with my care team, did I feel heard? Perhaps they were right; I would not see my next birthday, but with pieces of my diagnostic puzzle pending, I still had hope. I was a nonsmoker and in excellent health, more important, being a young South Asian man would prove to be a factor that predisposed me to the genomic alteration that would be found on testing.1 In a twist of fate, it was revealed that I had an anaplastic lymphoma kinase gene rearrangement, a result found in fewer than 5% of patients and one that would forever change the trajectory of my care.1 My life as a patient with cancer and a survivor had begun.

The past decade has brought with it a revolution in cancer treatment. The new era of targeted therapies, genomic testing, biomarkers, and immunotherapy has extended patient lives and provided remarkable insights into this life-altering disease. These rapid advances have also brought unexpected challenges, including the provision of care far beyond previous median survival times. As we embark on this new era of expanding treatment options, the importance of shared decision making will become even more critical to patient care in oncology. As doctors and patients work together to plan treatment, integrating the ever-expanding array of tests and therapies, consideration of each patient’s values, goals, and concerns will remain paramount. As part of this model, patients are invited to be part of a treatment team, to learn about their disease, to outline their hopes and fears, and to help contribute to decisions that will guide their cancer trajectory.2

This is not new ground of course; the shared decision model has been embraced by a field that has been moving away from its paternalistic roots. Great strides have been made in promoting patient autonomy, clear communication, and shared responsibility in treatment decisions, with programs such as VitalTalk and the 1-2-3 Project at Memorial Sloan Kettering Cancer Center helping to guide the development of effective communication skills among the next generation of oncologists.3,4 Shared decision making has become an integral part of the doctor patient relationship, helping to recognize and acknowledge the burden of disease, and providing support on the basis of an individual’s needs, values, and aspirations.2

Perhaps in part due to the shock of my diagnosis, those first experiences with my oncology team had left me feeling alone and without support. What I had imagined would unfold in such dire circumstances as a medical student did not become my reality as a patient. Throughout my training, I had witnessed the transformative power of the doctor-patient relationship and its ability to inspire and engender hope, yet I felt no such potential in my own care. Although every patient is different, and entitled to their own care preferences, I found myself seeking a team that would view and treat me as a partner in this unpredictable journey, as a young person with goals and aspirations and not one solely defined by a disease.

Care on the basis of a shared decision-making model has been shown to help patients, especially during the beginning stages of treatment. Through these discussions, patients have reported an increased level of trust in their physician, a lower level of anxiety, and a higher level of satisfaction with their treament.2 Despite these efforts, a recent study found that there can still be a misalignment between what patients and doctors consider most important during their consultations.5 For example, patients reported that discussion of post-treatment quality of life was most critical to them, while clinicians continued to focus heavily on clinical outcomes, and less than half of the patients felt that their personal priorities and future plans had been openly discussed.6 Such studies may reflect the lingering hesitancy among some patients to voice their concerns or to feel empowered to guide discussions. In a recent study in which patients were asked about their discussions with their oncology team, 81% felt they had been properly informed of the short term side effects of treatment, while only half considered the discussion of long-term side effects adequate. Notably, less than half of the patients had discussed their day-to-day priorities with the oncology team, and only a third had discussed their future plans.6 Indeed, patients still perceive conversations concerning quality of life and future planning to be often overlooked or unaddressed, and few report that their preferences are discussed before treatment plans are being finalized.6,7

This was true for me at the time of my own diagnosis. I recall feeling lost and unsure how to speak so that I would be heard. Despite my medical background, I did not know how to voice my hopes and fears as a patient, what questions were appropriate, and what role I should play in guiding my treatment course.

Early in my postsurgical recovery, while I was waiting to begin treatment, I spoke with a close family friend, a brother figure who was a physician. I was candid in discussing my feelings about my care team and ruminating on ways in which I could address this issue. “I think you should get a second opinion.” I stared at my friend, as it had not occurred to me, in my state of turmoil, to consider a further opinion until this moment. He went on to describe a specific doctor who was a leader in the field of thoracic oncology. “I think it’s important that you consider reaching out to her team. They may be able to help you find what you are looking for.”

It was this conversation that drove me to seek out a care team that was more aligned with my own needs, to find a collaborator and doctor who could help guide me as I battled this disease. My new oncologist’s first question was, “When are you applying to residency?” This was the first time a doctor had welcomed into the room my goals and aspirations. I felt like a person rather than a patient and that my cancer was only part of my identity and journey. Our discussions moved fluidly between my treatment options, disease statistics, and my own desires and fears, embodying the shared decision making that I had hoped would imbue our relationship. I can’t help but feel deep gratitude for my friend.

What may have started as a simple conversation changed the trajectory of my care and, perhaps, its ultimate outcome. I had undergone 8 months of targeted therapy with crizotinib when a new set of scans revealed disease progression. Shocked and overwhelmed, I was quickly transitioned to receive a course of systemic chemotherapy. Midway through my chemotherapy course, my oncologist presented me with an unconventional idea. A phase I clinical trial examining a new targeted therapy had opened and she believed this may be my best chance—to stop my chemotherapy and join the trial. As we discussed her recommendation, I realized that making such a decision with poise and confidence was only possible because of the trust we had developed, the time spent discussing my treatment trajectory, and the recognition of my own personal needs and goals. Although unconventional, I abandoned standard-of-care treatment and joined the trial—a decision that remains the reason that I am alive, writing this today.

My story is paradoxical. While becoming a doctor, I also became a patient. What I felt was most important as a patient did not always mirror what I felt as a physician in training. It wasn’t until my intern year that I began to fully appreciate how difficult it was to engage in shared decision making consistently and purposely with my patients. Ms A was a 78-year-old woman with concomitant bacterial pneumonia and bilateral metastatic pleural effusions from breast cancer.

Her cancer had recurred and metastasized to her bones, leaving her in insurmountable pain. In my naivete as a trainee, I began to formulate possible treatment plans and clinical trials that would give her more time, to generate options and treatment algorithms. It was my patient who stopped me, responding to my extensive planning with “No, sweetheart, this isn’t what I want. I’ve lived a wonderful life. I’ve seen my kids grow and I’ve held my grandchildren. I just want you to help my pain so I can be at peace.”

In my haste to give this patient my own version of hope, I had made decisions about her care without aligning myself with her or her goals. It was a humbling moment. Despite my experience as a patient, I had overlooked the unique life experience and goals that this patient brought me. Perhaps in retrospect, my surprise only emphasizes the bias that we can bring to these moments and the effort we need to put forth to engage in shared decision making and to honor our patients’ wishes.

As treatment regimens continue to extend survival, there remains work to be done to promote patient partnership and shared decision making.2,6 Indeed, in minimizing the role that our patients play in their treatment planning, we can inadvertently dismiss the fact that cancer is now interwoven in their life trajectory. When the term was first coined in 1982, shared decision making was born out of the desire to include and promote personal well-being and self-determination among patients.8,9 Over time, the shared decision-making model has been adopted as standard of care throughout medicine, honoring patient autonomy and the growing desire among many to be more involved in their own care. Pilot programs are emerging that prompt oncologists to partner with their patients and to have purposeful, early, and frequent discussions about treatment goals, regardless of stage, prognosis, or treatment phase.4

Numerous studies are now focusing on patient perspectives of shared decision making models and how they may be improved, and we as physicians are willing to listen and grow with this feedback.2,5 I often consider how my own disease course could have been different. If I did not have a trusting relationship and partnership with my oncologist, would I have been willing to join an early-phase clinical trial? This partnership has served as a teaching point for what shared decision making—and the trust it engenders—can achieve. A clinical trial, and the targeted therapy it was testing, saved my life and enables me to sit here and write this story. I currently have no evidence of disease but move through life with uncertainty. I continue to create new milestones as I achieve those before me—remission, another birthday, residency, and applying for fellowships, all within an ever-changing reality.

By embracing my roles as a patient and a doctor, I have been gifted unique insights into the critical nature of shared decision making and what physicians can do to build stronger connections with patients. I intend to use this gift to help every patient I encounter on this unpredictable journey.

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by ASCO Podcasts, which covers a range of educational and scientific content, and offers enriching insight into the world of cancer care. You can find all ASCO shows, including this one, at: podcasts.asco.org.

I'm your host, Lidia Schapira, Associate Editor, for Art of Oncology, and a Professor of Medicine at Stanford University.

Today, we're joined by Ameish Govindarajan, a post-doctoral research fellow at City of Hope Comprehensive Cancer Center. In this episode, we will be discussing his Art of Oncology article, ‘Chasing Milestones’.

At the time of this recording, our guest has no disclosures.

Ameish, welcome to our podcast and thank you for joining us.

Dr. Ameish Govindarajan: Hi. Happy to be here.

Dr. Lidia Schapira: Let me start by asking you what drove you to tell your story, and then decide to share your story so publicly with an audience of clinical oncologists.

Dr. Ameish Govindarajan: Yes, absolutely. My perspective is very unique, not only as a patient, but as a physician, and I felt that my story highlighted the aspect of oncology that is often not talked about; where there's a bond that is created between the oncologist and the patient, and focusing on the goal to get to the next milestone for the patient and the family members.

Dr. Lidia Schapira: That's beautifully said. And in your essay, you tell us that you have been gifted unique insights into the patient-doctor relationship because you've experienced it but from both sides of the bed.

Can you tell our listeners a little bit about what it was like to be a young student and be told you had this disease, lung cancer, that came as a total shock?

Dr. Ameish Govindarajan: Yeah, I still remember that moment. I think my whole world just crashed down upon me, and I was very fortunate to have my family and also close family friends that were physicians themselves, to kind of help me navigate these uncharted waters.

Dr. Lidia Schapira: And in your essay, what I found so moving is that you said that, what helped you craft this very therapeutic relationship with your oncologist, the second oncologist in this story, is that this person walked in and said, "Hey, what are your plans as a person?" And saw you as a whole person, not just as a body with a disease. How did that feel to you in that moment? Do you remember that?

Dr. Ameish Govindarajan: Yeah. I think it's a moment that's still embedded in my mind, and I often remind myself that that is one of the special moments of my life, in my career, and in my journey as a patient. It was uplifting. I felt heard for the first time, and where I wasn't defined, not by my diagnosis, but I was defined as what I was trying to achieve, and what I was trying to become; which is a physician, and I think that was a really powerful moment with me and my oncologist. That opportunity created and essentially fostered an environment of openness, and I was tremendously grateful for that.

Dr. Lidia Schapira: It sounds like a memorable and beautiful moment. And you talk a little bit about the trust that was established also - your goals were aligned, your oncologist saw you as the person that you are, and you defined these milestones. And then you said that at a critical moment, your oncologist offered you participation in an early-phase clinical trial, and it was because of that trust that you feel that you actually accepted that opportunity or challenge that has worked well for you. Tell us a little bit about that.

Dr. Ameish Govindarajan: I still remember I was receiving systemic chemotherapy at that time, and I remember her bringing up this idea, and she said, "We have this clinical trial, and I really believe that this would be the right answer for us." And I still remember that - where she used "us", and that it was hard to let go of standard of care treatment. But because of our relationship throughout this entire journey, I entrusted her with the unknowing and living in that uncertainty, and I think I often come back to the saying, "Fear and faith don't sit in the same bucket." And I chose faith, and I chose faith in Science. I chose faith in what my oncologist wanted for our journey together, and I think it was a very powerful-- and it's a tremendous moment now sitting back and reflecting on this, that, what a right decision it was.

Dr. Lidia Schapira: Well, you look like the picture of health, right now. So, Ameish, you've chosen to be very open about your cancer diagnosis. And this is something that every person needs to negotiate, how much they want to disclose with their peers, or coworkers, or mentors, even family, and how much they need to keep private.

How did you decide how much information you wanted to share with others, and who do you share it with?

Dr. Ameish Govindarajan: I battle with that every day. Self-disclosure, or disclosing my diagnosis is often not, in generally my encounters, because that's not what I'm there to do. I'm here to hear their story, and understand where their next milestone needs to happen.

But I generally have discussed my stories to my peers to remind that this isn't just an order. It is so much more and completing Internal Medicine when you actually obtain a consult and you're walking down to the emergency room, you have a list of questions and order sets that you're going to place before you pull back the curtain.

And when I tell my story, it's in that idea of, before we pull back that curtain, let's remind ourselves to align to the goal of what that patient needs, which will create and foster a better disposition in the long run, and they'll understand their diagnosis and disease process so much better.

Dr. Lidia Schapira: So, I'm hearing you say, and from your writing, I gather, you are a strong believer in good communication, and communication that is open, and frank, and honest, and supportive. How do you think that your experience as a cancer survivor has impacted on your attitude towards your patients in your role now as a physician?

Dr. Ameish Govindarajan: I think that the most powerful tool that we have is being completely transparent, but at the same time taking the time to really answer their questions. And by sharing space with them, and focusing on not just the clinical outcome, but how they will cope with this new diagnosis that is put on the EMR, and we're about to prescribe medications for, or recommend them to see another specialist. And what our job is, to make sure that we meet their metric, that we actually empower them to be their own advocate, and in order for us to actually have this advocacy being fostered, is us providing all the information that they need to make the right decision, not only to themselves but to their family members as well.

Dr. Lidia Schapira: In your essay, you actually tell a story where you as a physician were entrusted with the care of this older lady who had an advanced cancer, and you were thinking about all of the options for her, and she just stopped you and said something like, "Listen, sweetie, I've lived my life. I just want to be comfortable." And you said that was a bit of an aha moment for you as well, because you understood in that moment, that you were thinking about perhaps what you would want, instead of having listened and internalized to what your patient was saying to you. Tell us a little more about that.

Dr. Ameish Govindarajan: Yeah. I often think about that moment in my training because I was just starting, I was an intern, and I was a really tenacious intern who felt I wanted to make this change happen in real-time for this older patient with metastatic breast cancer with recurrence, and it was a humbling moment for me to really reflect on, that sometimes our goals, even despite what we want, we carry bias. And we hold bias to even our treatment strategies, our treatment plans, and the first thing that we have to do is again ask the patient and align to their goal before we actually make a treatment strategy.

Dr. Lidia Schapira: Let me conclude by asking you a couple of questions about where you are right now in your life, in your medical training. And first, the question I wanted to ask you is, do you consider yourself a cancer survivor?

Dr. Ameish Govindarajan: I do consider myself a cancer survivor in the setting of non-small cell lung cancer, and having metastatic stage four non-small cell lung cancer, you know that it's a diagnosis that you'll carry forever - there's no curative intent in that setting. But for me, I'm empowered every day, and every encounter I see with a patient, that there's hope, not only in the treatments, there's an opportunity in every encounter.

Dr. Lidia Schapira: And are you planning to be an oncologist, or are you already an oncologist? Catch us up on your training.

Dr. Ameish Govindarajan: I'm currently a post-doctoral research fellow at City of Hope, and my plan is, I'm currently applying for Fellowship in Hospice and Palliative Medicine and with the plan to also go into oncology as well, to be at the intersection of supportive care and oncology, focusing on improving quality of life metrics for patients afflicted with cancer.

Dr. Lidia Schapira: That's really inspiring to see how those unique gifts, as you call them, that you were taught from your experience, are now shaping your professional goals. It seems to me that you're in such a great position to really advocate for the patients that you will treat, and to help us understand the science of shared decision-making that is absolutely essential for patients living with this disease that we're all treating, called cancer.

So, thank you so much, Ameish. I just wanted to give you an opportunity to say some final comments or a message for our listeners.

Dr. Ameish Govindarajan: Yeah. Well, I just wanted to say, thank you so much for this opportunity. I'm truly grateful to share my story. And I think that if we remove not only, or we incorporate the idea of aligning to a patient's goal, we will actually obtain better treatment outcomes. That's what I feel.

Dr. Lidia Schapira: Thank you very much. And on that note, let me say thank you to our listeners for listening to JCO's Cancer Stories: The Art of Oncology.

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Guest Bio

Dr. Ameish Govindarajan is a post-doctoral research fellow at City of Hope Comprehensive Cancer Center.