Mar 02, 2022
By Ramy Sedhom, MD
As a young oncologist, I find myself wrestling daily with the practical issues in the practice of oncology. Consider the case of Jennifer.* She is 38, with triple-negative metastatic breast cancer. She has three children, and has full-time jobs as an accountant, a spouse, and a mother. She has pain and other physical symptoms, but overlooked are the social and existential threats. On third-line chemotherapy, she is torn between a desire to live and the fear of the future: Will tomorrow bear more sickness, pain, and disability? Will my kids remember the vibrant, playful, Taylor Swift–loving mom, or the one who was weaker, needing help, and sick?
Patients of all ages suffer from effects of their disease, its treatment, and perceptions of the future. Communication with patients is perhaps the most challenging aspect of cancer care, where the appropriate course of action often depends more on patient values than on medical dogma. What do you do when your patient, 82 years old with small cell lung cancer, tells you after her first cycle of chemotherapy that she wants to delay her next treatments for 3 weeks to travel with her sister one last time to the beaches in Florida? What treatment can I offer Jennifer to ease the pain of knowing she will never be called Grandma? Even the best clinical practice guidelines and treatment pathways cannot anticipate and advise on how to care for an individual person’s existential needs.
Unfortunately, medical training has become so disease-focused that appreciation of the illness experience and what is important to patients has taken a back seat. This is perhaps most evident in the education of our cancer clinicians. With each passing year, cancer care becomes increasingly complex, with unique financial, psychosocial, and caregiver stressors. One may complete 3 years of training blinded to the reality that not all patients benefit from what is shiny and new; in fact, there is only a recent push to make us all aware that many of our patients have limited access to our therapies. And despite our best intentions to improve quality of care delivery through evidence-based pathways, we’ve become too proud to recognize the limitations of anti-cancer therapy and the deeply personal, interpersonal, cultural, spiritual, social, and existential suffering from this horrible disease.
What can Jennifer’s experience teach us about the status of oncology training and practice today? To me, there are several learning points from her case. First, suffering extends beyond what is physical. It remains disheartening to me that the most common reason for palliative care referral in clinical practice is often symptom assessment (and often near the end of life); as a whole, we remain veiled to the reality of psychosocial, existential, and spiritual suffering. The second is that the problem of suffering is undervalued by our clinical training programs (and, by extension, our clinical practice). Third, and perhaps most important, there are too few of us with the opportunity to impact these pathways (and the system) upstream.
The evidence for palliative care is there, and simply stated, it is the most well-proven, underutilized driver of increased value in oncology practice. It is best applied early (within 8 weeks of diagnosis), with benefits to patients, caregivers, and health systems. Yet, the goal of cancer care for patients with incurable illness reflects a constrained view of its purpose—and ability. Our cancer centers market themselves with slogans on the promise of precision medicine to cure cancer. Even our own Society aspires, in its mission statement, to conquer cancer. While these pursuits are well-intentioned, they ignore the fact that for millions, this goal is simply out of reach. We are quick to race for the cure, but slow to race for the care of those who need it most.
The Value of Dual Training
For me, the decision to pursue dual training in medical oncology and palliative care was just happenstance. I recall my first week of oncology fellowship, sitting in a conference room with my peers, in one of many fireside chats with Ross Donehower, MD, FACP, FASCO. He asked us all where we had come from, a fun fact about ourselves, and what our clinical interests were. I always looked up to the geriatric oncology community, and in fact stated that this would be my intended path. A co-fellow whom I had not yet met (Arjun Gupta, MD, who is now one of my best friends) shared his passion for palliative care and his hopes for a career as a symptom management researcher. Fast forward 3 years, and I am board certified in medical oncology and palliative care. My mentors include giants in both fields like Arif Kamal, MD, MBA, MHS, FAAHPM, FASCO, Jamie H. Von Roenn, MD, FASCO, and Thomas J. Smith, MD, FACP, FAAHPM, FASCO. I always wonder, if the circumstances of my training had been slightly different, would I still value palliative care today?
Dual training has also afforded a deeper understanding of the issues raised by life with and after cancer. The tenets of palliative care practice have demanded a better understanding of the person I encounter when they are diagnosed with a serious illness. I’m not seeing a patient, I’m seeing a person with a name and unique identity: Jennifer, mother, spouse, accountant, Catholic, hopeful optimist, lover of pop music. Training has also instilled a reminder that no person exists without others. Jennifer’s caregiver is also a person with a name and identity and their own unique burden, ability, hopes, goals, and fears. Both are seemingly unaware of how illness will affect them and why. And our cancer care delivery system will do a poor job of investigating how to make meaning of this illness for each of them. In fact, for the best-intentioned clinicians, there are often financial barriers to doing so.
Oncologists care deeply about their patients; they want to do the right thing and take seriously their responsibility to manage their patients’ care. At the same time, palliative care clinicians have specialty skills and should more often be recognized as a valuable part of the team. Oncologists remain gatekeepers for patient access to palliative care, and often consider this service as “supportive” but not truly integral. Perhaps this reflects the fact that subtly, over years of specialty training, it was never emphasized to be more than that. We can all benefit from a little more compassion and appreciation for the unique challenges and strength of the other. Dual training can give us that context and understanding, and help us avoid feeling frustrated or territorial with each other. More importantly, increasing the number of palliative care–boarded oncologists enhances physician role modeling, allows innovation in care delivery, and addresses a workforce shortage for specialty palliative care.
In a world that grows increasingly vertical, deep, and siloed, it is important to take a step back and reflect on whether we consider the needs of those whom we seek to serve. Yes, many oncologists are extremely skilled communicators. They view their role as encompassing all domains of the patient illness experience. For these physicians, specialty palliative care training (or involvement) may rarely be needed. Still, for others, the opportunity to explore additional skills may be beneficial or desired.
Opening the door to dual training recognizes palliative care as one of the most important and therapeutic tools in cancer medicine. The stark and life-changing needs of patients and families are best served by a growing workforce of clinicians passionate about symptom management, goal setting, prognostication, and system-level solutions. While palliative care training is certainly not necessary for all oncologists, I do not see how it can hurt. Better comprehension of the illness experience, honest communication, and specialty training in end-of-life care navigation allows us to race toward a cure while offering all of our care.
*Name and identifying details changed.
Dr. Sedhom is a medical oncologist and palliative care physician with Penn Medicine. He is an Innovation Faculty member at the Penn Center for Cancer Care Innovation focused on supportive care and cancer care delivery. He is a member of the ASCO Trainee & Early Career Advisory Group and the Use of Opioids During Cancer Treatment Expert Panel. Follow him on Twitter @ramsedhom. Disclosure.