Caring for the Patient with Cancer: Body and Soul

Is oncology a spiritual practice? As a medical oncology fellow, I have engaged in existential questions that patients dying from cancer often ask. What is the meaning of my illness? Why am I suffering? Recognizing illness as a spiritual event did not come from any classroom experience, but experiential learning. The transcendent, spiritual nature of medicine is found in the crevices of daily practice. The spiritual nature of medical care begins when we acknowledge how much patients and healthcare professionals suffer.

Many oncologists report burnout,¹ and this loss of meaning and purpose has important consequences for both professional and personal life.^2,3 It affects our loved ones, our colleagues, and ultimately our patients.⁴ Burnout is inevitable when we lose track of why we entered medicine in the first place. Where are we going and why? To answer this question, it is perhaps helpful to start from the beginning.

Like most undergraduate students hopeful to become a doctor, my medical school application had one central theme: I wanted to help people. Yet, looking back, my medical education seemed focused on everything else. While appropriate time was allocated on how to take a medical history, I spent equal time memorizing non-essential information, such as the Krebs cycle, rare metabolic pathways, and intricacies of the nephron. I never learned about the financial costs of care and how people experienced bankruptcy as a result of having a serious illness.⁵ I knew of, but was never explicitly taught, the ongoing epidemic of loneliness in our older adult population. Unintendedly, medical education implied that every problem in medicine had some fix or answer. And thus, like the majority of my classmates, I felt a moral imperative to commit everything I was taught to memory. Problems not explained by a complex physiologic pathway seemed superfluous to what it meant to be a doctor.

Then, as a third year medical student, I made it to the wards. It was finally time to take care of people. And there I learned healthcare was very messy. To my surprise, I found myself working alongside fatigued and jaded residents. They were kind, but overworked and underappreciated. In almost every corner of the hospital, I encountered some disdain or cynicism. Everything trended toward disorder. After a few weeks of my grueling inpatient medicine clerkship, my passions evolved into stress, and serving people felt like work.

Then I entered residency. And these frustrations were heightened by the pace of the work. Three pagers on my hip went off every few minutes. My interview style grew increasingly directive, as I attempted to narrow all communication with patients to what was necessary to move forward with their care. Over time, I had effectively trained my patients to speak the way I wanted. Then, unexpectedly, I experienced the loss of my aunt. During her eulogy, I recognized a curious paradox. While medicine allowed us to do more for patients over time, we have become less satisfied with our work, as reflected in the untenable rates of physician burnout.⁴ My aunt was ultimately remembered for her presence. You were always the most important person when you sat with her. I later learned that she suffered from eight different cancers over her lifetime, and advanced heart failure from prior chemotherapy. Yet, she never complained. She lived fully and gracefully. And she always listened. Reflecting on her life, I developed a new conviction: the act of listening was an intrinsic good, recognition of another person’s complexity and value. And this is what I needed to be a good doctor.

Thanks to a few colleagues and amazing mentors, this conviction gradually matured into an innate quality. Over time, I appreciated the spiritual nature of our work by witnessing patient stories. And this has protected me from the sense of purposelessness in healthcare. At the outset, I wanted to define spirituality as a sense of connection to something bigger than ourselves. Growing up in an Orthodox Christian household, I was taught that my connection to the divine was not based on a system of rules but rather by a sense of belonging. My parents were quick to remind me that every childhood experience was in some way also experienced by God, and the people God guided generations before me. As a young adult, I was encouraged to volunteer and spend time with the vulnerable in society. I consumed experiences in nursing homes, homeless shelters, prisons, and hospice. And despite differences among individuals, spirituality was a nearly universal human experience. When faced with difficulty – whether it be hunger, loss of independence, injustice, loneliness, or the fear of death – questions of inner purpose or meaning stimulated spiritual thoughts. Why am I here? What is the lesson to learn from this struggle? Some experienced spirituality as a longing for someone or something. Others called on a god or a spirit. Learning at the feet of the vulnerable in society, I was on holy ground. It was hard not to appreciate the beauty of just being there - sitting in silence - listening to their stories.

Decades later, as a medical oncology fellow, caring for people unlikely to survive their illness, I found my own connection with the sacred guided by these intimate experiences. Medicine for me was a calling to serve others. Cancer in particular summons spiritual questions for patients who are dying. Yet, the ability to hear these groans from the soul required deliberate practice and learning.

During my first rotation on the leukemia service, I was consumed by my work. I paid special attention to fevers, white blood cell counts and blood cultures. I reviewed abnormal smears with the pathologist and learned the molecular drivers of cancer. I performed lumbar punctures and assisted in bone marrow biopsies. And despite observing tremendous suffering and death, I experienced what it meant to treat cancer, but missed the meaning. I did not engage much with patients or their caregivers. I was blind to the tangential effects of cancer and how life changing it can be. I never viewed cancer through the patient’s lens. To them, cancer is never seen as “uncontrolled growth,” but instead as unbridled destruction.

It is somewhat appropriate that I learned the true meaning of person-centered care at Johns Hopkins, an institution rooted deep in tradition. Warfield Londscope, one of the first Professors of Medicine and for whom one of the resident firms is named, wrote: “even though a clinician has science, art, and craftsmanship, unless he is intensely interested in human beings, he is not likely to be a good doctor.”⁶ As a resident, I focused on the technical aspects of cancer medicine. I aimed to be an excellent diagnostician, focused on the practice of evidence based medicine. But competence in this alone, without attention to the spiritual wounds of illness, was insufficient for healing. I missed many opportunities to reconcile my medical knowledge with the elements of human suffering.

Dr. Fetting, a breast medical oncologist, made me aware of my deficiency in this aspect of patient care. I had presented to him a new admission to the solid tumor service. Mrs. Smith* was a 62 year old woman with advanced breast cancer. I detailed her history, from initial diagnosis, to surgery, through adjuvant treatment, subsequent surveillance, and ultimately metastatic progression. I underlined how her current molecular markers and sites of disease influenced her prognosis. I suggested a treatment plan, citing the available evidence. Dr. Fetting gave a nod at the conclusion of my presentation, paused, and then asked a series of poignant questions: “How is Mrs. Smith coping with the news of her cancer progression?”

I was silent.

“What does she do for a living? Is she of a particular religious faith?”

Still, no words.

“Who is the person in the room with her? He appears distraught.”

After beaming from the thoroughness of my presentation, I became sheepish and humbled. I was embarrassed. I had not asked any of these questions. If he had pressed me, I would not have been able to share anything that actually mattered to the patient.

After two weeks rounding with Dr. Fetting, I gained an appreciation of the spirituality required to care for patients with cancer and recognized our shared humanity. When I began to ask families what brought them joy or meaning, I realized they were just like me. The limitations of cancer medicine were no longer a reason to feel numb. I had much more to offer than a reduction of their tumor on scans. I was now focused on improving their quality of life, helping them achieve goals and attend milestone events. I stopped ordering scans before holidays and delayed treatments before birthdays. My patients reminded me that their goal was to LIVE with cancer. Though their bodies faced limitation, their spirits lived free. Caring for patients was now more about building relationships and mending hurt. Looking into how disease touches the person’s soul buffered my own spirit from burnout.

Over time, I started asking my mentors difficult questions. What shielded them from burnout over their long careers? What mistakes did they make as young doctors? How did they incorporate the human side of patient care into a short 15-minute visit? In a common theme, all seemed to prioritize process over results. This was a difficult mental challenge for me, as my prior education was obsessively focused on outcomes. Yet, anyone who attends to patients with cancer would know that prioritizing outcomes leads to bitterness rather quickly. Cancer eats away at organs. Disease almost always progresses. “Never bet against the cancer” is one of the first Donehowerisms learned in our medical oncology fellowship.

Time is cut short.

Goals change.

Most ultimately die.

But cancer should never take away personhood or dignity. It cannot abolish relationships or trust. My role as an oncologist was to be there - to sit next to patients and listen. Practicing as a humanistic physician required me to locate my innate interest in people. As my mentors had suggested, and as my aunt exemplified, we should be the burden of proof that somebody cares.

Curiosity to what is “important” and “unimportant” makes a difference. As we got to know Mrs. Smith a little better, we became aware that she did not want to die before she reconnected with her son. They last spoke 15 years prior to her encounter with our cancer care team. She shut him out after he went to prison for selling marijuana out of her home. Thanks to our social work team, and the help of social media, we were able to bring peace to her soul.

Do we know what drives suffering for our patients?

Do we have the time or curiosity to ask?

Everyone who cares for the sick visualizes suffering every day. It is important to search for meaning in that suffering. Our patients surely do. Suffering is personal. For patients with terminal illness, it is often realized by the finitude of life. A cancer diagnosis, progression on scans, and discussions of hospice are all reminders of this threat to existence. Patient, from the Latin patiens, is “one who suffers.” If we review our patient lists today, there are many reminders of this suffering.

Physical reminders are seen in pain, diarrhea and neuropathy.

Emotional reminders in marital strain, divorce, and constant worry about children.

Financial reminders with debt, home foreclosure and bankruptcy.

Spiritual reminders when we lose faith in God or humanity.

We must give a name to suffering. This is the spiritual nature of our work. (A central role of whole person care is to help patients give a name to their suffering.)

Weeks away from graduating my medical oncology fellowship, I realized the greatest reward was the opportunity to recognize feelings of fear, loneliness, helplessness, and abandonment caused by cancer. From my patients and my colleagues (both in medical oncology and in palliative medicine), I have learned to become less afraid to ask questions of meaning and to attend to spiritual needs. Ironically, the greatest lesson was that we, too are also wounded and in need of healing. Illness can destroy not only the physical bodies of patients, but also the spirits of the doctors who care for them. It is no surprise that we find our work meaningless when we lose sight of why we entered this vocation in the first place.

The lack of time devoted specifically to the supportive care of patients, and the focus on treating the cancer instead of the patient, is my biggest criticism of medical oncology fellowships. Nationwide, there is limited time focused on building spiritual care skills across palliative care domains.⁷ In order to master these essential skills, I decided to pursue a hospice and palliative medicine fellowship after completing medical oncology training. Cancer is a complex disease that impacts patients beyond physical symptoms. Spiritual, emotional, psychosocial, and financial issues are common toxicities of cancer and rarely addressed in medical oncology training. Palliative care competency remains essential for a fully functioning oncologist. Whenever I mention my intent to dual-board, I am often asked: do you hope to become an oncologist who integrates palliative care in daily practice or a palliative care physician with a keen understanding of oncology?

Somehow, I find this question difficult to answer. Almost every day, in every oncology clinic, we care for patients for whom cure is not an option. With oncology training so focused on treatment, clinical trials, and drug development, it is not surprising that palliative care is not universally integrated into cancer care. Hence, the need to “define” myself.

It is my hope that medical oncology will more fully embrace its sister specialty, palliative medicine. The health (and spirit) of patients living with cancer would benefit from embracing more aspects of humanistic, patient-centered care. Caring for the dying and their loved ones is sacred; their bedside is hallowed ground. My own connection with the divine has strengthened as a result of these sacramental moments. I’m thankful for all my mentors and encouraged by the growth of palliative medicine. As the field continuously reminds us –as doctors, we bear humble witness to our patients’ spiritual transformation, even when we can’t prolong their lives. And that comforts me.