Abstract
End Game is a 40-minute documentary, which introduces the audience to the definitions of hospice and palliative care, and takes us to the bedside to consider how provider lead conversations with the dying look and feel. The film follows members of both the University of California San Francisco inpatient palliative care team as well as the Zen Hospice Project as they meet and care for five patients: Mitra, Pat, Kym, Thekla, and Bruce. Of the variety of themes that develop in observing these patient encounters, the notion of the duality that exists for dying patients and the clinicians caring for them reverberates throughout. There is joy and sadness, there is life and death, hope and worry, and the act of dying which is not medical itself, but which has been so powerfully medicalized in our health care system.
The movie flashes from patient to patient either in the hospital, clinic, or hospice house with commentary from the various providers. Each individual narrative provides a window into how we engage with our patients and the common themes we encounter in this study. We meet Kym, a retired nurse, who articulates the sense that she's not ready to give up yet, “not ready for hospice,” and the sadness and fear of that transition feels entirely palpable. In the same conversation there is a different kind of hope and acceptance as she powerfully shares precisely what she wants at the end of life—to be comfortable and at home. Kym holds both things to be true: she fears what it means to know she is at the end of her life, and she also has very specific hopes for how it will look and feel.
Thekla appears in the outpatient clinic setting and there is this immediate sense of vitality about her presence, in part, because as she puts it, “I love life.” This is intensely contrasted with a conversation about what it means to die, the finality of it, and the spiritual and existential question of what is next. The conversation with Thekla elucidates the dual nature of living and loving life and also holding the mystery of dying.
These are just a few of the interactions depicting the notion of duality I find myself often naming for my patients. It is true that we can hold both hope and fear, feel both joy and sadness, live life fully and also consider that it too will end. In the final portion of the film, Dr. BJ Miller identifies a duality I don't consider as often, but one which I think is worth more introspection. Dr. Miller asserts, “There is nothing inherently medical about dying. It's much larger than medicine. It's purely human.” This statement stands juxtaposed with Mitra's story, which captures a large portion of the preceding 35 minutes. Mitra's narrative illustrates a portrait of the medicalization of dying in America.
End Game begins with the inpatient palliative care team visiting Mitra. There is a vulnerability that is difficult to describe as the camera opens on this young woman, having lost her hair to chemotherapy, now lying in a hospital bed, worn by her illness, dressed in a hospital gown, answering questions about the day of the week and the president. It is striking in these first moments to see on a TV screen what is a daily part of our job in palliative care—to be with patients when they are at their most defenseless and to also navigate the practicalities of medical care. We watch a series of family meetings unfold as the team discusses the possibility of autopsy for research, further chemotherapy, hospice services, and as they address “bluntly” the medical practicalities of dying, specifically CPR, and then how to go about turning off the monitors in the final hours of life. There is an obvious truth in the story of caring for Mitra in her final weeks in the hospital. These are often the conversations we have with the sickest hospitalized patients as we walk through the final weeks with them. For me, the entirety of this story depicts the duality of the deep humanity lying at the center of dying and the medicalized nature of doing so in America. Although at its core palliative medicine seeks to place the patient at the center of care, ideally transcending the boundaries between humanity and science in some capacity, this documentary reminds us that we too inherently contribute to the medicalization of the dying process.
End Game stands out for the unique window it allows patients, families, and other providers into the work of palliative care and hospice. The powerful stories the audience is able to witness from afar will no doubt provoke thoughtful and emotional conversations among viewers, making it another tool for both patients and providers to navigate this time in life. For palliative and hospice providers, in particular, this movie can serve as an opportunity to look deeper at the work we are doing. It provides a chance to reflect on the duality of emotions our patients experience, as well as our own contribution to the medicalization of the dying process—the process which in and of itself is actually just human.