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Reflections |
La Salle University, Philadelphia, Pennsylvania, USA
Correspondence: Janine Mariscotti, M.S.W., L.C.S.W., Social Work Program, La Salle University, 1900 West Olney Avenue, Philadelphia, Pennsylvania 19141, USA. Telephone: 215-951-1114; Fax: 215-991-3562; e-mail: mariscot{at}lasalle.edu
Received September 2, 2008; accepted for publication September 30, 2008; first published online in THE ONCOLOGIST Express on November 5, 2008.
Disclosure: The content of this article has been reviewed by independent peer reviewers to ensure that it is balanced, objective, and free from commercial bias. No financial relationships relevant to the content of this article have been disclosed by the author, planners, independent peer reviewers, or staff managers.
When I was diagnosed with cancer nearly 3 years ago, I sensed that I was about to enter a medical arena for which I was unprepared. Despite my relative comfort with medical issues, I was ill-equipped for the sense of urgency, the seemingly endless diagnostic tests, the masked fear of my health care providers, and the necessity of making swift yet well-informed decisions that might have meant the difference between life and death. I also discovered a unique partnership with the oncologist that I didn't anticipate.
I've noticed that cancer patients expect something more or different from oncologists than from other health care providers. We expect the oncologist to learn all there is to know about our particular cancer, no matter how rare or complex. We want and need more than the requisite 15-minute visit. We expect the doctor to meet and interact with any number of people in our network of family and friends. We can be acutely sensitive to the actions and reactions of the oncologist. We need our oncologists to be confident, almost authoritative, when sharing their expertise, and simultaneously, we want them to be humble, kind, and simply "human." We want them to tell us a bit about themselves, their families, and their interests. Sharing something about their lives helps to normalize ours. There's a greater expectation than with other doctors that the oncologist will listen well, attend to verbal and nonverbal cues, interpret meaning, and say and do just the right thing at just the right time.
I'm not certain what accounts for this expectation of our oncologists. Perhaps it's standing on the precipice of life and death that contributes to this vulnerability. Or the sheer number of hours, weeks, months, or years the patient and oncologist might spend together. I'm not sure. I've come to recognize, however, that there is something distinctive that takes place in the patient–oncologist relationship that can impact the patient, and perhaps the oncologist, in unforeseeable ways. More than many other doctor–patient relationships, the oncology relationship has the potential to develop as a unique partnership in which lasting impressions, comfort, and new wisdom emerge.
I have a deep appreciation for the relationship between the patient and oncologist, and for some of the metaphors associated with their joint efforts to treat and cure cancer. Though I know little about team sports, the notion of two (or more) people working together to beat an opposing side is appealing to me, and while war is distasteful, there's no doubt that the image of battling and ultimately annihilating cancer is a very powerful one. Yet, it's the metaphor of dance that most resonates with me. The oncologist and patient's movement together through a sequence of both predictable and unpredictable steps in their best efforts to treat and defeat cancer creates a partnership that can be demanding and difficult, but also treasured.
As in a powerful dance sequence, the partnership between an amenable patient and skillful oncologist can evolve in ways that allow revelations about the self to emerge. The patient–oncologist partnership can provide rich lessons, not only in treating cancer, but in negotiating, in following and leading, and in trusting yourself and your partner enough to be honest, vulnerable, and intimate.
I spent 3 years in the care of my hematologist–oncologist. After months of medical investigation that involved numerous visits with my doctor, I was diagnosed with a rare cancer. Given the rarity of my cancer, some of my closest supporters couldn't fathom why I would stay with a doctor who practiced at a local community hospital rather than transfer to a specialist at a world-renowned cancer center. At their urging, I sought second, and then third, medical opinions. When the other physicians had no additional expertise, I returned to my doctor. Certainly, I thought about leaving my oncologist for a new health partner in my cancer care. But, I didn't want to make a change. There was a familiarity about the partnership with my doctor that comforted me. My oncologist and I had grown accustomed to each other. We developed a rhythm that was often predictable yet also provided space to improvise.
As my cancer treatment progressed, we found ways to make the partnership work. My oncologist gave me lots of freedom to participate in my own treatment decisions. In solidarity with me and along with my friends, he wore bright orange clogs at each appointment, even long after I abandoned mine because simply looking at them made me feel nauseated. He read oncology articles that I sent him through the mail. He would laugh with me when I needed to laugh, and could change direction very swiftly when I needed him to be serious. He didn't force me to negotiate. He was mostly patient with me and always respectful on the frequent occasions when I wanted to take the lead, acting as if I was the medical expert. He accepted that I could only trust him so far—and he didn't seem offended by this limitation. He stood with me in my rawest moments when the pure emotions of rage and grief emerged—and didn't appear to judge them or me.
The partnership wasn't flawless. We took turns leading and following, sometimes with less than graceful results. He challenged me when he thought I was going too far afield, and I challenged him when I felt he was being dismissive. I reminded him that he was accustomed to the physical and emotional intricacies of the cancer trajectory, having danced these familiar steps with scores of patient–partners over many years. I, however, was new to this difficult dance, and similar to someone with post-traumatic stress, I needed him to be exceptionally patient and compassionate with me as I navigated living with a cancer diagnosis.
We didn't always agree about the next steps to take in my cancer care. On more than one occasion, one of us was apologizing for stepping on the other's toes. Yet, after each awkward misstep, we would try again. In time, it seemed we made a bit of progress as together we choreographed a dance, the ending of which neither of us could know.
As someone who often prefers to dance solo, I was delighted with myself that I was learning to be an agile partner in the doctor–patient partnership when quite unexpectedly, my doctor made a pivotal shift that threw me off balance. When I was nearing the end of treatment and making proclamations about precisely how my final chemotherapy treatments would go, he said with quiet gentleness, "You don't get to make this decision alone."
This seemingly simple statement surprisingly evoked a swirl of emotions within me. Anger: "How dare he tell me I can't make this decision alone?" Fear: "What if I can't trust him to ‘get it right’?" Relief: "Thank God, I don't have to do this alone... ."
As in the dance partnership, the patient–oncologist relationship demands a great deal of trust and some vulnerability. Both partners must know and trust themselves and be willing to communicate their needs to the other. As well, the partners need to trust one another so as to take appropriate risks in the partnership.
My oncologist's assurance that we were in this dance together encouraged me to take risks in the partnership, not solely with my physical health, even when it was difficult for me to do so. His steadfastness allowed me to accept his kindness and comfort and to tolerate his challenges. I like to think that my oncologist also took some risks with and learned from me as we collaborated in a very intricate dance. The partnership with my oncologist stretched me in ways I could not have envisioned when I embarked on this journey, far beyond my imaginings, and far beyond cancer.
Sometimes, in the unwelcome and unpredictable cancer experience, something elegant and lovely can emerge. Sometimes, it's a renewed commitment to living each moment, or the realization of the depth of friendship, or an appreciation for the fragility and wonder of life. And sometimes, it's the wisdom and understanding that's cultivated in the delicate dance between the patient and the oncologist.
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  L. Nekhlyudov "Doc, Should I See You or My Oncologist?" A Primary Care Perspective on Opportunities and Challenges in Providing Comprehensive Care for Cancer Survivors J. Clin. Oncol., May 20, 2009; 27(15): 2424 - 2426. [Full Text] [PDF]
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