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  • Viewpoints

    When the patient is someone you love

    Physicians are trained to be objective healers. But what happens when it’s your child, your spouse, your parent, or even yourself who is ill? An educator shares wisdom from her own experience as a doctor-daughter and years of teaching the tough topic.

    Cynthia Cooper, MD, with her mother, Carol Johnson Cooper, before the Harvard Medical School educator found herself in the role of doctor-daughter.
    Cynthia Cooper, MD, with her mother, Carol Johnson Cooper, before the Harvard Medical School educator found herself in the role of doctor-daughter.
    Courtesy Cynthia Cooper, MD

    Editor's note: The opinions expressed by the author do not necessarily reflect the opinions of the AAMC or its members.

    I had been an internal medicine clinician-educator for only a few years when I learned that my mother had advanced-stage cancer.

    “The tumor shows nerve and blood vessel invasion. I didn’t share that part with your parents, but I knew you’d want to know,” my mother’s surgeon said almost conspiratorially. I’ve thought about that moment many times over the past 12 years. The information wouldn’t have meant much to someone without a medical education, but it did to me. By choosing to share this distressing information, the surgeon placed me in the privileged yet strange role of “doctor-daughter.”

    The tumor they biopsied from my mother’s left neck was so abnormal that the site of origin couldn’t be identified. Remarkably, my mother had the same type of tumor as a patient I’d cared for in medical school. My mind immediately made a disturbing connection between those two people: my indestructible mom and the young woman unresponsive to chemotherapy who died in less than three months. It was a connection that made it difficult to balance hope with my sense that grief had already begun.

    Being a physician entails a certain amount of denial about mortality — our own, that of our patients, and often most keenly, that of the ones we love. We are asked to stay whole and sane in the face of the most remarkable tragedies and to remain stoic and objective. In fact, though we thoroughly discuss the intricacies of our patients’ conditions, we rarely share stories of illness in our personal lives. This makes for a lonely experience when bad news comes our way, as it did for me with my mother’s diagnosis.

    Despite — or because of — my clinical knowledge, my role as doctor-daughter offered some advantages but was often painful and confusing.

    My mother's oncologist had an impressive resume, and I was grateful when she secured an appointment with him. But my parents took to calling him "the hummingbird" because he so quickly flew into and out of appointments. He stayed to answer questions exactly once — when I traveled from Boston to Pittsburgh to accompany them to an appointment.

    Though [physicians] thoroughly discuss the intricacies of our patients’ conditions, we rarely share stories of illness in our personal lives. This makes for a lonely experience when bad news comes our way.

    Getting my mother’s oncologist to sit down that one time wasn’t the only benefit of being a doctor-daughter. Another was access to incredible expertise. I flew my mother to Boston to see my hospital’s most renowned expert. He spent an enormous amount of time with her, and I have no doubt he does the same for all his patients. He helped enroll her in an experimental therapy closer to home, which gave me a sense of control during a time when there seemed to be little.

    The cancer didn’t care.

    Within months, it was clear that the experimental treatment wasn’t working. In a spirit of collective magical thinking aimed at a more positive interpretation, my parents express-mailed scans for me to review with my hospital’s radiologists. I sat in cool, dark rooms squinting at the bright glow of more extensive lymph node involvement and bulky disease snaking up into the left chest.

    Days later, my dad sent a picture of my mom perched on the edge of a chair in their sunroom. She was half-smiling but with eyes that were so sunken, so worried. The cancer was visibly erupting from the skin of her neck. I contacted the oncologist to ask about hospice and was told simply, “It’s your call.” There was none of the empathy I might have hoped for as a child discussing a parent’s death. I was left to make decisions as if I was my mother's physician.

    My own painful unpreparedness for this experience with my mother led me to recognize an educational opportunity for those I teach at Harvard Medical School.

    As the director of a course for medical students designed to ready them for their clerkships, I created a session covering a rarely taught topic: our own mortality and that of those we love. For lack of a better name, I called it "Death and Dying." The format was a large auditorium session with a panel of physicians who either had been diagnosed with a life-threatening illness or had been through the serious illness of a close family member.

    My panelists were extraordinary in their frankness, their generosity, and their willingness to share.

    One told of how he had been speaking to an audience when his spleen ruptured, immediately causing an acutely rigid and painful abdomen and heralding a diagnosis of non-Hodgkin lymphoma. He managed to finish his speech before seeking medical care. He was a young father, had just finished his residency, and was told he had an advanced malignancy.

    One physician spoke eloquently about her young son's seizures, first noticed as eyelid flickering, that soon progressed to overwhelming grand mal seizures. She spoke of how paralyzed she and her husband — also a physician — were by the knowledge of what the crescendo seizures might mean for their son’s cognition as well as their terror of losing him when their son needed neurosurgery.

    A dear friend and fellow clinician-teacher talked about having her nonphysician husband casually mention that his PSA (prostate-specific antigen) test had returned with an “H” next to it. She asked for the number, and he replied that it was over 100. She recounted that it was as if the future felt immediate and claustrophobic: his illness, his death, her widowhood, and the loss of her partner and father to her two teenage daughters.

    The session was 60 minutes long, and by the end, most of the students were crying.

    Sessions like "Death and Dying" can bring into the open what many doctors fear facing alone and encourage a sense that we can find support in each other when we’ve become a doctor-child, doctor-spouse, or doctor-parent. I hope other institutions consider adding such a vital resource to their curricula. I recently stopped directing the course, in part to focus more on my family, but its lessons will forever remain with me.

    Here are some key insights I gained from five years of teaching “Death and Dying” and my own experience as a doctor-daughter:

    Connect to the team. Often, the specialists treating your family member have no prior knowledge of your loved one. Bring in pictures of your relative when they were well, participating in beloved activities. Photographs are powerful reminders for your family member — and their treating physicians — of their full humanity.

    Be a resource. You likely can translate medical information into words your family member can understand better than anyone. Talk with your relative to ensure that they understand the physicians’ recommendations. Better yet, if you’re able, be present when the information is conveyed. Either way, help your family member assemble questions in advance.

    Use your community. As physicians, we are often privileged with wonderful connections. Reach out to other providers, including via social media outlets such as Facebook groups for physicians. These can be powerful and reassuring resources when you’re helping your family member choose providers you don't know personally.

    Value kindness. A physician's necessary skills extend far beyond their CV-worthy qualifications. Look for thoughtfulness, patience, and effective communication in your family member’s clinicians. These are qualities you and your relative will value more than academic rank or publications.

    Don't go it alone when making difficult decisions. It is important that the treating physician be the one to initiate and direct conversations about the end of your family member’s life. You may be a physician, but you are a relative of a dying loved one first. Even if you’re an expert in exactly the illness affecting your family member, the experience is utterly different when kinship, love, and sorrow are involved.

    Stay present. There can be a strong urge to leap ahead in time to where the illness might lead or how things might end. Resist the pull to grieve too soon. Try to stay present for yourself and your loved one. The present may be difficult, but it is still meaningful time together.

    If you have a physician as a patient or patient’s family member, be kind. We’ve all experienced or heard of unpleasant interactions with family members with medical training who demand extra testing or consultations. Know that they are struggling with a desire to fix all that is in front of them and that the struggle may have deeper roots than you can see. Remind them that they can support their family member through explanation and reassurance, but they can’t be their family member’s doctor.