Wijdicks, Eelco F. M. MD, PhD
The inescapable fate of a great long marriage is that most of the time one spouse leaves before the other. Observing the rapid neurologic decline of a loved one is even more undeserved and unfathomable. Do we want to be reminded of that or see films about it?
Many films poorly represent and exaggerate degenerative neurologic disease but some clearly pass muster. “Iris” (2001) and “Away from Her” (2006) — both on Alzheimer's disease — come to mind. These films focus on one major aspect of humanity — the desire to engage in and maintain loving relationships when such an ordeal strikes. Some films — “Legends of the Fall” (1994); “Flawless” (2007); and, most memorably, “The Diving Bell and the Butterfly” (2007) — explore stroke, but none have dealt with the human toll on relationships when a loved one declines, facing the constant threat of crumbling away until there is no vitality left.
Now, a new film, aptly titled “Amour” and brilliantly directed by Michael Haneke, does just that. Haneke, a luminary of cinema, is known for films that show life as it is. Many of us can identify with his characters. His multilayered films are filled with allegories that invite analysis, but there is no right or wrong interpretation. His most recent lauded films — “Caché” (about guilt or lack thereof), “Das Weise Band” (about child abuse), and now “Amour” — are so close to the heart that it changes one's outlook on the topic.
Haneke forces us to not only watch the scenes, but also to witness the events and feel the heaviness of being in compromising situations — he does this without manipulating the audience. His films are in his own words on “complexities and contradictions.” The idea for the “Amour” screenplay came from his personal experience helplessly watching an elderly family member deteriorate from frailty and commit suicide.
“Amour” is a character study of two highly cultivated octogenarian piano teachers, Anne (Emmanuelle Riva) and Georges (Jean-Louis Trintignant), and their daughter (Isabelle Huppert), played phenomenally by three icons of French cinema. The film is quiet, staged as classic theater, and filled with emotional dialogue mixed with Schubert's impromptus. Anne suddenly develops neurologic symptoms, is devastated by a stroke, and deteriorates further. Georges is now faced with the care of his wife. Initially, this seems not too much of a chore, but soon things change as the care becomes increasingly complex.
“Amour” offers some clues on Anne's condition, but there is little to allow a detailed neurologic assessment. The sudden speech arrest and frozen stare — with no recollection — is dramatic and closest to what appears to be a complex partial seizure. She subsequently has difficulty pouring tea using her right hand. A carotid artery stenosis is found followed by endarterectomy and she is left with profound right-sided weakness but without a speech impediment; she is wheelchair-bound. She has been told she could have a 5 percent chance of complications, but apparently she does not belong to the supposedly 95 percent risk-free surgical group. There is no doctor-patient conversation about the complication, which seems to be treated as a matter of fact and just bad luck — a classic Haneke theme.
Soon after this surgery, Anne develops another, far more devastating stroke. This should give pause to any neurologist — and it stopped me. Carotid endarterectomy has been performed in octogenarians, and vascular surgeons have reported no increase in postoperative mortality or stroke when compared with “younger” patients. Carotid endarterectomy may be justified knowing the average life span of a woman of 85 years is still about 5 years, and thus there might be the, albeit unproven, potential for benefit. (These patients have typically been excluded from major clinical trials.)
Stroke specialists — assuming the first presentation was a stroke and not a seizure or an unclear spell with asymptomatic carotid disease — may certainly come away with some reservations if (at least in this film) the result is much worse than before, and quickly leads to another stroke. All of this is not terribly relevant to the main plotline of the movie, but it could prompt discussion about medical and surgical decisions in the vulnerable very old. Coercion into questionable surgery after a questionable event with eventually poor results could easily be another frightening theme for Haneke.
Emmanuelle Riva convincingly plays a stroke victim, and there is no better representation on film. Georges, played just as convincingly by Jean-Louis Trintignant, nurtures her to the best of his ability, though he is hampered by his own frailty. He provides for all transfers, performs passive range of motion, and even melodic intonation therapy. There is some humor (sprinkled with dark sarcasm) in this part of the film, and it is very touching to see both Anne and Georges try to make the best of the situation. Together they look at photos from earlier times, eliciting Anne's response, “it is beautiful... this long life.”
But now they seem imprisoned in their Paris apartment. Professional support at this stage would have been expected, but Georges has little of it, except for a biweekly visit with a family doctor who tells him that admission to the hospital after the second stroke would have little use and staying home would spare her all these tests. It is all because Anne told him that she would never want to be hospitalized again. She rejects any form of sympathy and gets visually irritated when the topic comes up. Georges displays repressed pain and by the time his exhaustion becomes visible, he fires a private nurse. He tells his frequently aloof and alienated daughter, “None of this deserves to be shown.”
A major element of the film is the loneliness, but also the desire to be left alone even if assistance is offered. This might be one of the main lingering themes for neurologists to consider: How do we organize care for stroke patients after they are dismissed from the hospital, and can we help and improve their dignity? Do we appreciate the spouse's ordeal and offer assistance?
“Amour” is not specifically about how society deals with the problems or infirmities of the elderly, but the film could still start that discussion. All of this cannot be hand-waved away, as if this could only happen in France or Europe, because it can happen anywhere.
In a very dramatic way, the film shows the familiar, yet often unrecognized, problems of denial and burnout in a caregiver. At the end of life, the ultimate sign of love may be to provide relief of pain and suffering, which the movie shockingly (and appallingly) portrays after Anne has signaled refusal of fluids and frequently cries out in pain. Is this the crime of passion of advanced age?
“Amour” shows us the cruel change in a loving relationship brought about by illness and how this change heralds an end to the romance. The realization that genuine, deeply rooted love for each other is the only thing we have and may be suddenly taken away for no good reason, just at random and unannounced, is painful to watch. It also sheds a harsh light on the major problems with the home care of a neurologically disabled patient; I cringed each time Anne was spoon fed and coughed. The lack of adequate neuropalliation is very apparent and a warning.
See this film. I am sure it will force you to ask these questions: Are we doing enough to prevent this isolation in couples? How might we better help them accept the reality? What are the consequences of certain medical care choices? “Amour” does not answer these questions — it does not have to do that — but it ignites a discussion exactly as Haneke intended it. It is an unforgettable work of art.
Dr. Wijdicks is professor of neurology at Mayo Clinic in Rochester, MN.