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The Way We Die: Listening to the Terminally Ill

Clinical Professor UC Berkeley–UC San Francisco Joint Medical Program Director, Center on Aging University of California, Berkeley Berkeley, CA E-mail: guym{at}socrates.berkeley.edu

The Way We Die: Listening to the Terminally Ill. Video/ 1995/ 25 min. Directed by Jonathan Mednick. Co-directed by Ted Skillman. Photographed and edited by Jonathan Mednick. Produced by Other Pictures, Inc., for the Virginia Health Policy Center. Distributed by Fanlight Productions, 4196 Washington St., Suite 2, Boston, MA 02131. 800-937-4113. Online: www.fanlight.com. E-mail: info{at}fanlight.com. Rental $60 (one day) or $120 (one week), Purchase $199.

The Way We Die: Listening to the Terminally Ill is a short film, only 23 minutes long. It begins with three introductory quotations. The first words arise on a black screen background: "The problems and needs of the dying are at the center of an increasingly vocal debate in the United States." There is indeed an "increasingly vocal" concern about how we die in America. Medicine and physicians are criticized for not being empathic, for being too technology-oriented, for "keeping people alive" beyond their time, for not listening. The film speaks to all of these issues.

The second quotation comes on screen to the accompaniment of the incessant beeping of an ICU monitor and a video of someone lying abed on a ventilator in an intensive care unit: "The great technical prowess by which medicine now sustains the lives of the terminally ill has brought with it a host of unanticipated problems." Yes, though just what these might be are not elucidated in this film. The third quotation tells us: "Increasingly health care providers are questioning our current model of patient care and its ability to serve the physical and social needs of the terminally ill and their families." Again, yes. What this film is about and, despite its brevity, what it successfully portrays is that the psychosocial needs of patients and families are frequently not being met.

After the quotations, the chief commentator in the film, Dr. Margaret Mohrmann, "Physician and Ethicist," comes on screen and has some good things to say about how she realized—from her patients—that her work was not just about her job, it was also very much about the lives of her patients. She tells us that in medicine, "We get so focused on what we're doing and how we are understanding the situation that I'm not sure we always pay enough attention to what it means for the person and that person's life. And the only way you can do that is [by] listening." Right.

The film now presents four short vignettes about four patients and their family-member caretakers. The first is an elderly couple with a communication problem. We learn from the apparently seriously ill husband that he feels his wife wants him to die and get it over with, and that he understands that desire. He says so, but he seems to resent it. He tells her (and us) that when she's angry she says it outright: "Why don't you die!" She denies this. You feel their suffering. They could benefit from serious psychological counseling. Dr. Mohrmann then comes on saying, "Listen ... it's not just when did the pain start ... it's what does it mean?" A bit of a non sequitur, but good advice nonetheless. Maybe if someone listened, as we do, watching this film, this couple could be helped.

The second vignette is that of a young man, emaciated, dying, probably with AIDS. His parents care for him. He is sorry about the burden he puts on them. His mother asks him, often, "Is today quality?" For, if it is, then life should continue. She advises us that "quality is just whatever you think it is today .... You don't know until you get up if this is a quality day or not." Many scenes of mother and son follow, doing the best they can, one with him seizing in her arms. While she seems up to it, he's not ready for all this (and says so). The viewer is left to wonder, is there no help for this man, this family? Psychological, spiritual help. If so, it is not shown to us.

Next, and perhaps most disturbing, comes the story of a 12-year-old girl, dying of (probably) leukemia, as told by one of her physicians, Dr. Mohrmann. The girl is in the intensive care unit, in isolation, and wants to get back to her hospital room on the ward—the closest thing she would get to going home. Dr. Mohrmann "finally heard what she was saying" and manages to facilitate this, knowing, with the girl's parents, that this would be where she would die. It is unclear if and how anyone shares this with the dying child. The night of the transfer, she dies, not unexpectedly, but not before being taken back to the ICU and intubated during a resuscitation attempt. The parents had asked the doctors on call not to do this. Dr. Mohrmann tells us that they (the doctors) failed to care for the patient: "they did their duty" but "took her death away from her family." Mohrmann: "The best intentioned, most compassionate, most humane physicians who have the strongest sense of wanting to do the right and good, are often serving their own sense of the right and good." Yes. But what are we to make of her story? It is reminiscent of the play Wit wherein, at its end, the dying patient is subjected to the nastiness of an attempted resuscitation, despite being "no code." The code team was called and did their job; it isn't their job to decide at the bedside if this patient should be "coded." The primary doctors need to convey that message, clearly and decisively, to all concerned. What went wrong in the story Dr. Mohrmann told? The blame seems to rest with insensitive on-call physicians, but it may be much more complicated than that. When faced with a 12 year old whose heart has stopped, no doctor would withhold a resuscitation attempt unless it were crystal clear that it should be withheld. Of course, it should have been crystal clear. Why wasn't it? This is fodder for a good discussion.

The final story is that of a fragile elderly man with a stroke and a tracheotomy. He is weak on his left side, seems alert and able to communicate, but cannot talk. The question is put to us: "What does Jesse want?" (Calling patients by their first name in public discussions always irritates me, but that's another story.) His wife, when asked if she resents his condition, says, "Yes." By that she means she does not blame him; she feels resentful because most of their retirement will be spent with him in the hospital. Then, during a home visit, "Jesse's" physician discovers that he is bleeding (again) from his rectum. "What are you gonna do now?" asks his wife. "What do you think we ought to do?" responds the physician, to which she (not unreasonably) replies, "Well, I think you ought to see if he needs blood and, if it's necessary, give it to him." The physician, expressing his frustration at seeing where things are going, is asking whether "we" should let Jesse die. But, since this is never made explicit, it goes right by; and, instead, his wife responds concretely about the current situation. Of course, it really isn't a question to be asking her. Jesse is awake, alert; he should be asked (in the presence of his wife), but only after an explanation of what is happening; specifically, after a detailed description by his doctor of his diagnosis and prognosis and a discussion of his goals for any future therapy. His doctor does tell him directly, "I don't want to do anything that you don't want us to do. But, I don't know that we're going to be able to stop you from bleeding." We hear nothing (directly) spoken about the fact that Jesse is dying. We can only hope that further discussions take place. Alone, in his office, Jesse's doctor admits how hard it is (how much "it hurts") to take care of dying patients. As he says, "Just telling somebody they're going to die is so difficult."

Dr. Mohrmann has a final say: "I don't know how they feel .... I don't really understand in the way that my patient does, the meaning of the illness, but I can hear and accept and remember what they tell me of their understanding. And I can let that determine importantly how I am dealing with them and their illness." Her words and tone throughout the film are considered and thoughtful. They are reminiscent of lessons learned from Arthur Kleinman's Illness Narratives: illness has meaning—the way into it and the humane care of a patient is through "intense listening" ("empathic witnessing").

This film is provocative, as much for what it does not say and show, as for what it does. Anyone interested in end-of-life care and particularly physicians in training—and that includes medical students and all physicians—could benefit from viewing and discussing the stories and issues it portrays. For pedagogical purposes it would be unwise to use the film without an expert clinician-ethicist present—someone like Dr. Mohrmann—to help interpret and flesh out partially presented ideas (and present missing ones), and to guide the extensive discussion that the film deserves.

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