Essay: House call
Caring for people who have cancer does not stop when treatments stop.
Thirty-two years ago, as a hematology-oncology doctor in training at Boston City Hospital, oncology nurses were my primary teachers who influenced me the most about caring for the terminally ill. They showed me what the impact would be on a patient and the family if we went to see them when they could no longer come to the clinic or hospital. Making a visit to see a patient at home is a truly humbling experience, and I have tried to make time to do this, knowing that it reinforces in full measure what it truly means to be a physician.
Burnet, Texas: If you go to Burnet, you will drive through the Hill Country that Texans dearly love, the land of Lyndon Johnson, the Pedernales, stunning vistas. The directions said: “281 to 29 and left into our ranch with the cedar post gates and the cattle guard, and then I’m sorry but a 2-mile dirt road up to our house.” Renal cancer had blown through everything, and the architect lay dying in a home he had designed and built on a hill. “See those beams?” he said, pointing straight up as I sat by his bedside. “I recycled them from a house that was torn down. I was green before it was cool to be green.” On my way out, his wife pointed to Lake Buchanan in the distance, and leaned against my car. A long pause, and then she said, “I know,
I know. One day at a time, right?”
William Carlos Williams, doctor, writer and poet, walked all over Paterson, New Jersey, to see his patients at odd hours of the day and night, and wrote so eloquently about that experience. Admittedly, this is not easy to do in the modern era, and I am grateful for the role models who showed me how an ideal home visit is done.
Usually, after all the treatments—surgery, chemotherapy, radiation and experimental therapy—are done, and there is still suffering despite control of pain and symptoms, I have offered to see patients at home. I make an appointment and arrive without a white coat, without equipment and without a black bag. I have learned that my presence matters; empathy and compassion matter. We address concerns at the bedside, sometimes at the kitchen table, and often on the porch or driveway. I have seen how silence is not stressful. Minutes go by without conversation, but comfort is offered. I don’t feel alone; hospice teams are on the front lines and work with me.
Broadway and Ridgecrest, San Antonio: Jackie always spoke about La Crema, her favorite pinot noir, especially on days that were a struggle. “Look what they did to my boobs!” she said. She was feisty. Her mother, a retired oncology nurse, looked on as only a mother who had decades of breast oncology under her belt can look at her offspring. Jackie had brought her dachshund to the breast cancer clinic on her last Christmas, with the dog in a Santa outfit with the red hat strapped on. Now she lay in her apartment. Through the haze of morphine, she beckoned her mom close. “Give Dr. Karnad the third bottle from the left on the top row. That’s a Lodi zin; and then, here, take the last one on the bottom row. That’s a buttery chardonnay. I won’t be drinking them. Might as well give them away!”
Guilbeau Road, San Antonio: A young couple from India. He was stoic, tall, mostly silent. The cancer had jumped from his parotid gland under his right ear and was now strangling his small and large bowel in half a dozen places. She spoke for him. He wanted no surgery, no treatment. It took nearly a year to bring him to his deathbed. By then he had somehow managed to maneuver soft rice through the dead ends of his obstructed bowel; how, I never knew. Parents from Kerala had arrived. His mother told me softly, “He doesn’t even like my tea.” The next time I saw him was at the Morningside Inpatient Hospice Unit. Wailing family packed the halls, and I leaned in to offer my condolences.
Even as a revolution in science brings new treatments for cancer nearly every day, there is a need to focus on the control of pain and suffering as we seek new ways to prevent and treat this disease. There is a saying that many caregivers live by: “To cure sometimes, to relieve often, to comfort always.” Being able to see a patient at home may be a huge comfort to those in that home. And in so many ways, it’s a comfort to me as well.