Sitting with grandma

DOI: 10.1200/JCO.2013.51.2467 My wife Jane and I raised our family in New England, far from our childhood homes in the Midwest. When our two sons were young, my mother-in-law elected to move to Massachusetts to be close to us, and “Grandma” became our children’s main source of extended family. Outings with Grandma were routinely planned at least once every 3 to 4 weeks, and she was also our primary babysitter during our younger and less financially secure years. We eventually moved back to the Midwest, leaving Grandma behind, comfortable in her nowestablished home and long-time job in New England. However, within a year, we received a terrible phone call from her primary care doctor informing us that she had an unresectable lung cancer. After some debate, we talked Grandma into moving back to the Midwest to be near us. Our then-23-year-old son, Ben, had moved back home with us after graduating from college, and so, as she started palliative chemotherapy, we reinstituted routine family outings with Grandma, just like old times. My mother-in-law responded to initial treatment for her lung cancer and did well for many months. But eventually, inevitably, her disease progressed and became refractory to treatment. Her oncologist—one of my colleagues—suggested hospice care, a proposal she readily accepted, as did we. As her health rapidly declined, we moved her into our house, and with the wonderful support of the hospice team, we prepared for the worst. The worst happened. Her pain became more difficult to control and she became increasingly breathless. Large doses of narcotics rendered her comfortable enough, but with the price of somnolence and delirium. She was tethered to an oxygen compressor by a tube that frequently became tangled or discarded in her many moments of confusion. The days were hectic, and in the heat of the moment, we often forgot to fully appreciate the “privilege” of caring for her. During all of this, Ben was wonderful. I’m an oncologist—I’ve seen many people through the final stages of illness until their deaths, although admittedly, never in my own home. Jane had previously cared for her grandparents during their cancerrelated deaths, and she took this new travail in stride. Ben, although a novice at such care, fell right into step—always helpful, always cheerful. One Thursday evening, after two particularly rough nights for Grandma, I arrived home from work and noted that she was nearly unresponsive. Within 20 minutes she was gone. Jane and I could only express relief—her life during the previous weeks was certainly not the way that she had wanted to live. But how would Ben react? Instinctively, he wanted to sit with Grandma one last time. The arrivals of both the hospice nurse and the funeral home staff were delayed, giving him several hours at her bedside, during which he was able to express his appreciation that he was present for his grandmother during her final hours. What if she had been in the hospital during her final days, as so many of our patients used to be, and as some still are? Would Ben have had the privilege of sitting with Grandma after she died? I don’t know, but I do have an enhanced respect for what those minutes can mean. Both of our sons will always remember the joy of their outings with Grandma, but Ben will also remember the stillness, calm, and spiritual intensity of the final hours after her death. Postscript (April 2013). I first wrote this essay in 2003, soon after my mother-in-law died. While our family’s grief was still fresh, I shared it with my colleague, Grandma’s oncologist. Although he urged me to submit it for publication, for a variety of reasons I decided not to do so. I had long since forgotten it, but he kept it on his computer all these years, and just recently asked me if I would reconsider submitting it. Life has gone on. The experience of being “on the other side” 10 years ago as a family member rather than an oncologist has given me a sustained appreciation for the compassion of the hospice staff and their importance to the process of dying at home, which we who work in the clinic and hospital do not often directly observe. In subsequent years, I have often personalized my discussions with patients when hospice becomes an option for them, emphasizing the tremendous value of the service that palliative care and hospice teams provide. And what about Ben? With each major event in his life, Jane and I look at each other and nod, “Wouldn’t Grandma be proud of him?” Ben went on JOURNAL OF CLINICAL ONCOLOGY A R T O F O N C O L O G Y VOLUME 31 NUMBER 31 NOVEMBER 1 2013