Cancer Stories: The Art of Oncology: Chasing Milestones: The Importance of Shared Decision-Making Between Oncologists and Patients (2023)

Dec 13, 2022

Listen to ASCO’s Journal of Clinical Oncology essay, “ChasingMilestones” by Dr. Ameish Govindarajan, a post-doctoral researchfellow at City of Hope Comprehensive Cancer Center. The essay isfollowed by an interview with Govindarajan and host Dr. LidiaSchapira.

As a young physician, Govindarajan shares his personal andprofessional experiences as a cancer patient with non-small celllung cancer and the importance of shared decision-making betweenoncologists and patients.

TRANSCRIPT

Narrator: Chasing Milestones, by AmeishGovindarajan, 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 socksyou were wearing or the type of ceiling tiles over your hospitalbed. I lay there alone, a medical student in my 20s, chest tubesemerging from my side. My doctor had just informed me that I had6-8 months to live. I can still picture those ceiling tiles.

What started as an innocuous, yet persistent, cough provedresistant to routine treatment and eventually warranted a computedtomography scan. A cavitary lesion in my right lung raised thespecter of more serious possibilities. A bronchoscopy andvideo-assisted thoracic surgery confirmed the unthinkable—I hadstage IV non–small-cell lung cancer.

As a physician now myself, my mind often returns to thathospital room and how the discussion of my disease, my mortality,and my impending death unfolded. My oncologist at the time outlinedmy grim circumstances: genomic testing could maybe provide somehope, while palliative chemotherapy would only delay theinevitable, as I would be unlikely to see my next birthday. Whilewaiting for my genomic testing results, I reflected on myrelationship with my care team, did I feel heard? Perhaps they wereright; I would not see my next birthday, but with pieces of mydiagnostic puzzle pending, I still had hope. I was a nonsmoker andin excellent health, more important, being a young South Asian manwould prove to be a factor that predisposed me to the genomicalteration that would be found on testing.1 In a twist of fate, itwas revealed that I had an anaplastic lymphoma kinase generearrangement, a result found in fewer than 5% of patients and onethat would forever change the trajectory of my care.1 My life as apatient with cancer and a survivor had begun.

The past decade has brought with it a revolution in cancertreatment. The new era of targeted therapies, genomic testing,biomarkers, and immunotherapy has extended patient lives andprovided remarkable insights into this life-altering disease. Theserapid advances have also brought unexpected challenges, includingthe provision of care far beyond previous median survival times. Aswe embark on this new era of expanding treatment options, theimportance of shared decision making will become even more criticalto patient care in oncology. As doctors and patients work togetherto plan treatment, integrating the ever-expanding array of testsand therapies, consideration of each patient’s values, goals, andconcerns will remain paramount. As part of this model, patients areinvited to be part of a treatment team, to learn about theirdisease, to outline their hopes and fears, and to help contributeto decisions that will guide their cancer trajectory.2

This is not new ground of course; the shared decision model hasbeen embraced by a field that has been moving away from itspaternalistic roots. Great strides have been made in promotingpatient autonomy, clear communication, and shared responsibility intreatment decisions, with programs such as VitalTalk and the 1-2-3Project at Memorial Sloan Kettering Cancer Center helping to guidethe development of effective communication skills among the nextgeneration of oncologists.3,4 Shared decision making has become anintegral part of the doctor patient relationship, helping torecognize and acknowledge the burden of disease, and providingsupport on the basis of an individual’s needs, values, andaspirations.2

Perhaps in part due to the shock of my diagnosis, those firstexperiences with my oncology team had left me feeling alone andwithout support. What I had imagined would unfold in such direcircumstances as a medical student did not become my reality as apatient. Throughout my training, I had witnessed the transformativepower of the doctor-patient relationship and its ability to inspireand engender hope, yet I felt no such potential in my own care.Although every patient is different, and entitled to their own carepreferences, I found myself seeking a team that would view andtreat me as a partner in this unpredictable journey, as a youngperson with goals and aspirations and not one solely defined by adisease.

Care on the basis of a shared decision-making model has beenshown to help patients, especially during the beginning stages oftreatment. Through these discussions, patients have reported anincreased level of trust in their physician, a lower level ofanxiety, and a higher level of satisfaction with their treament.2Despite these efforts, a recent study found that there can still bea misalignment between what patients and doctors consider mostimportant during their consultations.5 For example, patientsreported that discussion of post-treatment quality of life was mostcritical to them, while clinicians continued to focus heavily onclinical outcomes, and less than half of the patients felt thattheir personal priorities and future plans had been openlydiscussed.6 Such studies may reflect the lingering hesitancy amongsome patients to voice their concerns or to feel empowered to guidediscussions. In a recent study in which patients were asked abouttheir discussions with their oncology team, 81% felt they had beenproperly informed of the short term side effects of treatment,while only half considered the discussion of long-term side effectsadequate. Notably, less than half of the patients had discussedtheir day-to-day priorities with the oncology team, and only athird had discussed their future plans.6 Indeed, patients stillperceive conversations concerning quality of life and futureplanning to be often overlooked or unaddressed, and few report thattheir preferences are discussed before treatment plans are beingfinalized.6,7

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

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

It was this conversation that drove me to seek out a care teamthat was more aligned with my own needs, to find a collaborator anddoctor who could help guide me as I battled this disease. My newoncologist’s first question was, “When are you applying toresidency?” This was the first time a doctor had welcomed into theroom my goals and aspirations. I felt like a person rather than apatient and that my cancer was only part of my identity andjourney. Our discussions moved fluidly between my treatmentoptions, disease statistics, and my own desires and fears,embodying the shared decision making that I had hoped would imbueour relationship. I can’t help but feel deep gratitude for myfriend.

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

My story is paradoxical. While becoming a doctor, I also becamea patient. What I felt was most important as a patient did notalways mirror what I felt as a physician in training. It wasn’tuntil my intern year that I began to fully appreciate how difficultit was to engage in shared decision making consistently andpurposely with my patients. Ms A was a 78-year-old woman withconcomitant bacterial pneumonia and bilateral metastatic pleuraleffusions from breast cancer.

Her cancer had recurred and metastasized to her bones, leavingher in insurmountable pain. In my naivete as a trainee, I began toformulate possible treatment plans and clinical trials that wouldgive her more time, to generate options and treatment algorithms.It was my patient who stopped me, responding to my extensiveplanning with “No, sweetheart, this isn’t what I want. I’ve lived awonderful life. I’ve seen my kids grow and I’ve held mygrandchildren. I just want you to help my pain so I can be atpeace.”

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

As treatment regimens continue to extend survival, there remainswork to be done to promote patient partnership and shared decisionmaking.2,6 Indeed, in minimizing the role that our patients play intheir treatment planning, we can inadvertently dismiss the factthat cancer is now interwoven in their life trajectory. When theterm was first coined in 1982, shared decision making was born outof the desire to include and promote personal well-being andself-determination among patients.8,9 Over time, the shareddecision-making model has been adopted as standard of carethroughout medicine, honoring patient autonomy and the growingdesire among many to be more involved in their own care. Pilotprograms are emerging that prompt oncologists to partner with theirpatients and to have purposeful, early, and frequent discussionsabout treatment goals, regardless of stage, prognosis, or treatmentphase.4

Numerous studies are now focusing on patient perspectives ofshared decision making models and how they may be improved, and weas physicians are willing to listen and grow with this feedback.2,5I often consider how my own disease course could have beendifferent. If I did not have a trusting relationship andpartnership with my oncologist, would I have been willing to joinan early-phase clinical trial? This partnership has served as ateaching point for what shared decision making—and the trust itengenders—can achieve. A clinical trial, and the targeted therapyit was testing, saved my life and enables me to sit here and writethis story. I currently have no evidence of disease but movethrough life with uncertainty. I continue to create new milestonesas I achieve those before me—remission, another birthday,residency, and applying for fellowships, all within anever-changing reality.

By embracing my roles as a patient and a doctor, I have beengifted unique insights into the critical nature of shared decisionmaking and what physicians can do to build stronger connectionswith patients. I intend to use this gift to help every patient Iencounter on this unpredictable journey.

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

I'm your host, Lidia Schapira, Associate Editor, for Art ofOncology, and a Professor of Medicine at StanfordUniversity.

Today, we're joined by Ameish Govindarajan, a post-doctoralresearch fellow at City of Hope Comprehensive Cancer Center. Inthis episode, we will be discussing his Art of Oncologyarticle, ‘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 behere.

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

Dr. Ameish Govindarajan: Yes, absolutely. Myperspective is very unique, not only as a patient, but as aphysician, and I felt that my story highlighted the aspect ofoncology that is often not talked about; where there's a bond thatis created between the oncologist and the patient, and focusing onthe goal to get to the next milestone for the patient and thefamily members.

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

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

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

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

Dr. Ameish Govindarajan: Yeah. I think it's amoment that's still embedded in my mind, and I often remind myselfthat 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 forthe 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 wastrying to become; which is a physician, and I think that was areally powerful moment with me and my oncologist. That opportunitycreated and essentially fostered an environment of openness, and Iwas tremendously grateful for that.

Dr. Lidia Schapira: It sounds like a memorableand beautiful moment. And you talk a little bit about the trustthat was established also - your goals were aligned, youroncologist saw you as the person that you are, and you definedthese milestones. And then you said that at a critical moment, youroncologist offered you participation in an early-phase clinicaltrial, and it was because of that trust that you feel that youactually accepted that opportunity or challenge that has workedwell for you. Tell us a little bit about that.

Dr. Ameish Govindarajan: I still remember I wasreceiving systemic chemotherapy at that time, and I remember herbringing 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 washard to let go of standard of care treatment. But because of ourrelationship throughout this entire journey, I entrusted her withthe unknowing and living in that uncertainty, and I think I oftencome back to the saying, "Fear and faith don't sit in the samebucket." And I chose faith, and I chose faith in Science. I chosefaith in what my oncologist wanted for our journey together, and Ithink it was a very powerful-- and it's a tremendous moment nowsitting back and reflecting on this, that, what a right decision itwas.

Dr. Lidia Schapira: Well, you look like thepicture of health, right now. So, Ameish, you've chosen to be veryopen about your cancer diagnosis. And this is something that everyperson needs to negotiate, how much they want to disclose withtheir peers, or coworkers, or mentors, even family, and how muchthey need to keep private.

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

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

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

And when I tell my story, it's in that idea of, before we pullback that curtain, let's remind ourselves to align to the goal ofwhat that patient needs, which will create and foster a betterdisposition in the long run, and they'll understand their diagnosisand 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 goodcommunication, and communication that is open, and frank, andhonest, and supportive. How do you think that your experience as acancer survivor has impacted on your attitude towards your patientsin your role now as a physician?

Dr. Ameish Govindarajan: I think that the mostpowerful tool that we have is being completely transparent, but atthe same time taking the time to really answer their questions. Andby sharing space with them, and focusing on not just the clinicaloutcome, but how they will cope with this new diagnosis that is puton the EMR, and we're about to prescribe medications for, orrecommend them to see another specialist. And what our job is, tomake sure that we meet their metric, that we actually empower themto be their own advocate, and in order for us to actually have thisadvocacy being fostered, is us providing all the information thatthey need to make the right decision, not only to themselves but totheir family members as well.

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

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

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

Dr. Ameish Govindarajan: I do consider myself acancer survivor in the setting of non-small cell lung cancer, andhaving metastatic stage four non-small cell lung cancer, you knowthat it's a diagnosis that you'll carry forever - there's nocurative intent in that setting. But for me, I'm empowered everyday, and every encounter I see with a patient, that there's hope,not only in the treatments, there's an opportunity in everyencounter.

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

Dr. Ameish Govindarajan: I'm currently apost-doctoral research fellow at City of Hope, and my plan is, I'mcurrently applying for Fellowship in Hospice and PalliativeMedicine and with the plan to also go into oncology as well, to beat the intersection of supportive care and oncology, focusing onimproving quality of life metrics for patients afflicted withcancer.

Dr. Lidia Schapira: That's really inspiring tosee how those unique gifts, as you call them, that you were taughtfrom your experience, are now shaping your professional goals. Itseems to me that you're in such a great position to really advocatefor the patients that you will treat, and to help us understand thescience of shared decision-making that is absolutely essential forpatients living with this disease that we're all treating, calledcancer.

So, thank you so much, Ameish. I just wanted to give you anopportunity to say some final comments or a message for ourlisteners.

Dr. Ameish Govindarajan: Yeah. Well, I justwanted to say, thank you so much for this opportunity. I'm trulygrateful 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 willactually obtain better treatment outcomes. That's what I feel.

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

Don't forget to give us a rating or review, wherever you listen.Be sure to subscribe,so you never miss an episode of JCO's Cancer Stories: The Artof Oncology, which is just one of ASCO's many podcasts. Youcan find all of the shows at: podcasts.asco.org.

The purpose of this podcast is to educate andto inform. This is not a substitute for professional medical careand is not intended for use in the diagnosis or treatment ofindividual conditions.

Guests on this podcast express their ownopinions, experience, and conclusions. Guest statements on thepodcast do not express the opinions of ASCO. The mention of anyproduct, service, organization, activity, or therapy, should not beconstrued as an ASCO endorsement.

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Guest Bio

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