My mother had Stage 4 ALK-positive lung cancer. She was treated in Pittsburgh at the University of Pittsburgh Medical Center (UPMC) and was in a clinical trial at Mass General in Boston with Dr. Jessica J. Lin, a medical oncologist specializing in thoracic cancers.
My mother saw Dr. Lin for three years for a concurrent second opinion with her treatment team at UMPC. In early October, my mother went to Mass General for an outpatient medical visit with Dr. Lin. Her vitals declined during the visit. She was transferred to a medical floor, then to the ICU. She died a week later.
During the past few years, I’ve gotten to know Dr. Lin. She possesses some of the widest and deepest clinical skills I have ever seen in a physician, and she sets the gold standard in empathetic and dignified care. Her bedside manner, communication skills, and decision making are something that all providers (and patients and their families) can learn from. I interviewed Dr. Lin for Better Health Advisors in the hopes that her insights will benefit others.
How do you describe the work you do?
Dr. Lin: I am a medical oncologist specializing in thoracic cancers at Mass General. Most of the patients I see have the diagnosis of lung cancer, many of whom have advanced or metastatic stage lung cancer. I have developed a particular dedication to taking care of patients who have lung cancers with certain gene alterations for which targeted therapies can be an option. Those include lung cancers with ALK gene rearrangement. I also lead a number of clinical trials, especially early drug development with phase one clinical trials. So I wear two hats: I am a thoracic oncologist in the Center for Thoracic Cancers at Mass General, and I also am a phase 1 trial investigator at Henri and Belinda Termeer Center for Targeted Therapies at Mass General.
One of the things that you do, and my mom and I talked about it, is you provide really personalized care. You're there holding people's hands. Can you talk about that?
Dr. Lin: I think this is the basic, core element of doctoring — being a doctor, as opposed to being someone who's gone through textbooks and just has medical knowledge. Being a doctor in my mind is not merely offering medicines to slow down the cancer or to help with the symptoms. That's of course very important, but it is only the beginning. To be a true doctor for the patient, I think you really have to try and walk the patients and their caregivers through the highs and lows of the process of living with cancer, and be one of the key support people outside of the family who can be there to talk them through both the physical and emotional/mental aspects of living with cancer.
You balance the possibility of a patient dying with the hope that they will live, and you know when to tell the family to come visit. How do you skillfully deliver such difficult, and at times confusing, messages?
Dr. Lin: I think it's important for doctors and families to realize that no one can predict human life. Doctors try to give ranges — whether it's days, weeks, or months — based on what they know about the patient, the amount of cancer that's in the body, what the pace of the cancer change has been, and how they're looking today, but doctors are only humans too, and they can only try to predict so much.
I have patients surprise me all the time. Some patients’ bodies prove to be a lot more resilient and they live for much longer than what we might have anticipated. Some patients’ bodies show us they were just ready to go. They have much shorter time than what one might have anticipated. Knowing that these uncertainties and lack of predictability exist, what I try to do is, based on what the patients and families have told me about what's important to them, think about how to help them in minimizing the amount of regret. This is one way to approach it. That's why it's so important to communicate about the priorities and what matters to the family beforehand — so that as physicians, we can try to respect those wishes and make them come true as much as possible.
You talked our extended family through my mom’s end-of-life care and carefully selected your words, even in times of great concern. How do you talk with families about what is happening and what could happen?
Dr. Lin: I put a lot of time and effort into preparing as much as I can for those conversations with the patients and families. End of life is an incredibly difficult and emotionally charged time for patients and their loved ones. You're talking about not just the medical condition and how it causes physical symptoms, but also the psychological element. There are also the spiritual issues surrounding approaching the end of life and the process of dying as well. This is still a learning process for me. I think all oncologists are constantly learning throughout their career how every single word carries so much weight. There might inevitably be occasions where we said one phrase kind of in passing, but that could be something that patients and their caregivers lose sleep over for days and weeks. Realizing that, I try to be even more thoughtful in what I say and even more so in how it is communicated.
I try to make the explanation about the general medical condition itself as concrete as possible, because the uncertainty is one of the hardest parts about living with cancer and then dying with cancer. What does it mean that the cancer progressed? How does that translate into what symptoms someone might experience on a day-to-day basis? And making sure that all of that is framed in the larger context of who the patient is as a person. Before they were diagnosed with cancer and were living with cancer, they were men and women who were living their lives with certain hopes and dreams, and who had families they were taking care of. Everything that happens to them in the context of cancer has to be placed into that framework. I try to always remind myself to think about that, and how it's affecting them as people first and foremost.
That means getting to know your patients as people, right? What are those conversations like?
Dr. Lin: A lot of times, I meet patients for the first time to discuss clinical trials. Then I'm reviewing where their cancer is, what trial options exist, and moving forward with enrolling in the trial and treatment. From the initial encounter, things happen very fast. I will be the first to admit that, as much as we try, we do not learn that much about the patient as a person from that first encounter. It takes multiple repeated visits and conversations, not just about, “How's your cough? How's your shortness of breath?” But really asking, “How have you been living your days? What are your hobbies? Who's bringing you joy during this time? Who are you worried about most as you're hearing this bad news?” I make sure to ask those questions when I meet the patient and as I'm getting to know them better.
As they're processing new pieces of information, I ask them, “What are your worries? What are your fears? What are your hopes? Is there an important family event coming up that is really critical for you to be able to attend?” Those questions help shed a lot of insight into the patient as a person.
As soon as my mother was diagnosed, we came to Mass General. I wanted to develop a relationship, so if something happened down the road, we would have established care. It's something that I advise people to do — to have a plan in place.
Dr. Lin: I share the same advice with patients as well. It's really helpful at those critical junctures where patients are facing the need to change their treatments. Those are points where I encourage patients to seek second opinions and explore the portfolio of clinical trials that may be available at these top notch academic centers. It helps to get connected early on, even when you're doing well, because there may be more insights that you can gain about your specific diagnosis and what it means.
Part of coping with this immense diagnosis that cancer is, is honing in on the details. It can be really difficult to think about, “What if the treatment no longer works?” It's just such a dark box to try and open. And sometimes, as hopeful as oncologists need to be, I think it’s the oncologist’s job, too, to help open that box a little bit when they're in the clinic. And then you can close it back up and store it away, so that the patients and families can go out of the clinic and continue to live their lives.
As an oncologist, do you think most patients realize how important the relationship is when selecting a doctor? What advice would you give someone who’s trying to find a good doctor?
Dr. Lin: I think it's really helpful to talk to the patient advocacy groups that exist, because those patients and families have a lot of insights to offer about their own experiences of living with cancer and meeting different doctors. For example, there’s the ALK Positive group; for ROS1, there's ROS1ders. For several different subtypes of lung cancer now, there are very active patient groups that are accessible, and they are quite proactive in offering different insights and advice.
Can you talk a little about the relationship you have with your patients?
Dr. Lin: Once you have this diagnosis of cancer, for most people, it marks a completely new chapter of their life. It's like your life's been turned upside down, and you have to rethink your life goals, ranging from career to family to financial aspects. And there's a stranger that you've never met before who does cancer care as their career, and you're meeting them for the first time. Within weeks, they might become one of the people that you're seeing most often, sometimes even more than some of your family members. I think that's the privilege and challenge of being an oncologist, which is that here you are, meeting somebody who's lived, say, sixty years of their lives before they’ve met you. They have a whole history behind them. You’re walking in and helping them make decisions about life and death, treatment vs. no treatment. That level of connection becomes so intense and so close, at such a quick pace, that it's incredibly important for the patient and the family to feel like they've met a doctor that they can trust.
How would you teach other doctors to establish trust?
Dr. Lin: By listening. Being there for the patient and providing the best care that you can. Every step of the way, my motto is: Provide the same level of care to the patient that I would want provided to my closest family. That's what I try to do every day. I want my patients to receive the highest level of care that I would want my own family to receive if they were struggling with an illness.
Did you fall into the ALK positive targeted work, or was it something that interested you?
Dr. Lin: I have a longstanding interest in oncology that first blossomed when I was an undergraduate at Harvard. I met a mentor at that time who was just incredible. He ignited in me a passion for doing cancer science, and I learned for the first time how much patients and families with cancers went through. That interest developed into a passion and commitment through my training in medical school, residency, and fellowship.
I became even more committed to lung cancer during residency and fellowship. There were really three main factors. First and foremost was the patients and the families that I was taking care of, who inspired and motivated me to work on research to come up with better treatments. The second major factor was meeting mentors along the way who were specializing in thoracic oncology and who were exemplary in how they combined their expertise and intelligence with sheer compassion. I could see firsthand what that combination could achieve in terms of helping patients feel better, live better, and so forth.
The third major factor that really drives me still today is how deeply intertwined the science and the medicine is in thoracic oncology. That really comes alive through the example of targeted therapies. What we see in terms of how these tumors with certain targets behave in the laboratory, and how exquisitely sensitive these tumors can be to targeted therapies, and then how they evolve, how they develop resistance and become recalcitrant to the therapies being given. All of that biology at the really basic level is what you witness in the clinic on a day to day basis in patients. There's just such tight correlation and translation between the lab and the clinic, and that's the part that both motivates me and interests me as an oncologist.
Is there anything else that you want us to know about your work? Are there any common misconceptions you want to straighten out?
Dr. Lin: There are a few. One is, lung cancer does not just affect people that have smoked. In fact, the majority of patients that I treat, with lung cancers with these gene alterations, have never touched a cigarette in their lifetime. Don't assume that if you meet a person who's living with lung cancer that they've smoked before. Also don't assume that because somebody's never smoked, they should never get lung cancer. It affects everyone who has lungs.
The second thing is that it’s essential and critical to make sure that all the right biomarker testing has been performed when somebody is newly diagnosed with metastatic lung cancer. More often than I would like, I see patients who had been diagnosed but didn't have all the right testing done to explore whether targeted therapies could have been an option for them as treatment.
Does that mean that some places aren't meeting that standard of care?
Dr. Lin: If you look at national guidelines, like the NCCN guidelines, which we often refer to in oncology, they recommend this biomarker testing for anyone newly diagnosed with advanced lung cancer. But data is growing demonstrating that there are still occasions where it doesn't get done.
At Better Health Advisors, we often recommend that people look for doctors who are following national standards and treatment guidelines. We send people for second opinions on oncology, mental health, substance use, and other things. What do you think about that?
Dr. Lin: I always encourage second opinions, even from my clinic, for my patients. Something I do with a lot of decisions and recommendations for patients is weigh the pros and cons. Every institution may have different clinical trial options and different ways of approaching a certain moment in the cancer illness. I think it can always be helpful to get a fresh set of eyes to review what's going on and what they might recommend as the next step.
Possible cons are that you have to invest the time, for example, to travel to a different center to get a second opinion. It takes time and effort. If you're really feeling unwell, that may simply not be feasible. If those cons can be compensated for, I think it's always good to have a second opinion. My golden compass is always, “What is going to help the patient the most?” Everything else fades away.
Dr. Lin, thank you so much for this conversation and for everything you did for my mom.
If you or someone you love could use help navigating the healthcare system, consider working with an expert health advisor. A health advisor can help you find excellent doctors and healthcare facilities near you, manage a new diagnosis, arrange for mental health or substance abuse treatment, and much more.
