Although it failed to take home a statue at the Academy Awards, the documentary short film “End Game” is worth watching for its portrayal of end-of-life conversations and decision making from the perspective of families, patients, and care providers.
Those of us who’ve sat with or been part of a grieving family will recognize some common themes as well as misperceptions about hospice care. One theme that is portrayed in this film is how families and care providers grapple with the question of what to do when cure is no longer possible and prolonging life may only prolong suffering.
End Game contrasts these two possible paths: Continued hospitalization with aggressive treatment to try to prolong life, or transitioning to hospice care with a focus on symptom management. Which path is right for the patient is a deeply personal and difficult choice, a point that the filmmakers make with sensitivity and compassion.
As an ethicist, I was most troubled by Mitra’s case (one patient the film follows). In my opinion, her family did not sufficiently explore what is most important to her during the moments when she was lucid. Perhaps these conversations took place off camera, but I never got the sense that they knew her wishes at the end of life or, if they did know, it wasn’t clear that they felt they could respect them. They described her as a “fighter,” which is a term often used by patients and families that can have many different interpretations.
Sometimes patients and families disagree about what this term means. As a viewer, I wanted to know more. Is Mitra the kind of fighter who will continue to struggle, even if there is no chance of “winning?” Or is she the kind of fighter who knows when to throw in the towel? What is she fighting for? Who is her opponent?
It is clear from the film that the family disagrees among themselves and with the team about whether to continue treatment or shift to comfort care. Both her husband and mother are reluctant to “let her go.” To them, hospice means death.
Mitra herself describes being “between two walls.” This is an important metaphor that is also open to multiple interpretations. Yet, neither her caregivers nor her family ask her what she means. Failing to inquire about her goals, expectations, and what matters most to her makes it much more difficult to make decisions based on what she would have wanted, which is the ethically preferable basis for surrogate decision making.
Like our palliative care colleagues, most ethicists have experience and training that prepares them for probing deeply into a patient’s story. Not to unpack these very important turns of phrase is to leave the patient’s story out of consideration at a time when it is most crucial.
Although her family is adamantly opposed to inpatient hospice, they recognize that they are not truly prepared to take care of her at home. She ends up dying in the hospital. However, the questions about whether this is the ending she would have chosen remain unanswered.
Towards the end of the film Dr. B.J. Miller, palliative care physician and former executive director of the Zen Hospice Project, points out that there is “nothing inherently medical about dying.” For him, hospice care is not about giving up, but about couching the experience of dying in the “full arch of humanity.” That the goal of hospice is to improve the quality of a patient’s life, not to shorten it, is a fact that is often missed by families who are committed to “fighting” until the end.
As a film, End Game succeeds in showing that there are other ways to approach death and dying outside of the hospital walls, especially if the goal is to approach dying as a natural and not necessarily medical experience. As hard as they may be, films such as this make these conversations more accessible to the public and show the importance of having them sooner rather than later.
-By Andrew Childress, Ph.D., assistant professor in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and a clinical ethicist at Houston Methodist Hospital and Baylor St. Luke’s Medical Center