by Craig M. Klugman, Ph.D.
This past weekend I spent a cold, snowy day in the theater watching the movie Still Alice. Julianne Moore plays Alice Howland, a renowned neurolinguistics professor at Columbia University who is diagnosed with familial, early onset Alzheimer’s Disease. The film opens with Howland celebrating her 50th birthday where she has a momentary lapse in thought. We next see her giving a lecture at UCLA where she loses her place in giving a presentation. Then she is jogging through the campus where she has taught for decades and finds that she recognizes nothing.
The film shows Moore’s doctor visits as she seeks a diagnosis, her heartbreaking revealing of her disease to her family members, and how she and her life changes dramatically—and in a brief period of time—as she becomes someone else. The change in her persona, and the brilliance of Moore’s acting, is made evident when Alice-with-advancing-Alzheimer’s stumbles upon a video of newly-diagnosed-Alice. Seeing later-stage Alice watch her earlier self provides a side-by-side comparison that shows the viewer not only how dramatic the change has been, but also how seamlessly her decline happened so that we were not aware of how much Alice had changed.
The film is based on a New York Times fiction bestseller and multiple award winner, Still Alice by Lisa Genova, a writer and actor with a neuroscience Ph.D. from Harvard. She self-published the novel and sold it out of her car for a year before it was picked up by Simon & Schuster. In the book, Howland is a professor at Harvard living in Cambridge and the story is told completely from Alice’s point-of-view.
From a medical humanities standpoint, the film elicits empathy and understanding through a patient’s perspective and the challenges both patients and families face. Each of the Howland family members has to make a life choice that will directly or indirectly affect their mom: Eldest daughter Anna is wrapped up in her career and her new children. Alice’s husband chooses to move to Minnesota for the next step on his career ladder. Lydia, the youngest daughter, walks away from her big acting break to become Alice’s primary caregiver. The film raises questions of how much sacrifice any one person or family ought to make for one of their members, especially when the choices that move them away from Alice are in line with the values that she herself held and by which she lived.
From a bioethics perspective, several intriguing issues are raised. The first matter I noticed is the question of autonomy. In one scene, the family gathers around the dinner table in their vacation house on the beach. The son, Tom who is in medical school, wants to know all about what medications she is on, the prognosis, and what diagnostic tests were conducted. Anna, who is newly pregnant, wants to take over decision-making and begins to infantilize her mother. Lydia is a struggling actress who has rejected college and move to the West coast. She is also the one who stands by her mother, providing support, and wanting to maximize Alice’s independence and decision-making. We come to learn that this daughter, who has rejected the career-first-and-at-all-costs ethos of the family, is the true caregiver who stands by Alice when the rest of the family moves on with their lives. While the film provides an answer to this issue—Lydia’s take is the film’s correct choice—for the rest of us, it does raise a question of what is the right balance between protecting someone and maximizing their freedom.
A second issue is genetic testing. Both Anna and Tom choose to be tested to see if they have the Alzheimer’s gene. Anna does have it and Tom does not. Lydia selects against testing, saying she wants her future to just unfold. Besides, at the moment, there is nothing to be done to prevent or cure the disease.
Third, the film brings up the question of embryo selection for certain genes. As part of her IVF treatment, Anna has her embryos tested so that she can only implant those that lack the Alzheimer’s gene. Thus, she is choosing which embryos to bring to life and which to relegate to the freezer or the drain. The film raises the concern of whether as humans we should be changing the frequency of appearance of detrimental genes. After all, Alice would never have been born, she would not have made her great academic contributions and she would not have created this family.
The fourth issues builds on autonomy and asks about the notion of personhood in a person whose brain is changing. Soon after her diagnosis, Alice visits a care facility for people with Alzheimer’s. The facility is an amazing model: Patients are given maximum freedom of movement and choice for their cognitive level. Arm bracelets open doors or keep them locked, depending on the patient’s requirements. Family and friends can visit 24/7. Activities are not mindless group games of bingo, but rather are individualized interactions with staff and volunteers. The facility also looks like an elegant hotel. Instead of restraining people to wheelchairs, a seat alarm goes off if someone leaves their seat, so that help can come immediately to see if they are okay or are about to wander off (or have fallen). This vision of her potential future makes Alice run to a doctor and get a prescription for heavy duty sleeping pills. She puts the pill bottle with a note, “Take all pills with water,” in the back of her drawer. She records a video for her future self with instructions on where the pills are, that they should be taken with water, that after swallowing them all she would lay down and go to sleep, and that she should tell no one what she is doing. Alice sets up a self-quiz with questions she must answer daily: What is your daughter’s name? In what month were you born? When she can no longer answer these, a message will pop up directing her to the video on her laptop. In bioethical terms, she has created an advance directive for suicide.
But Alice-further-along-in-her-disease loses the cell phone that prompts her for the questions. One day she is accidentally left home alone when she stumbles across the video on her laptop. She heads upstairs to carry out the instructions only to arrive in the room and not remember what she was supposed to do. After several trips up and down the stairs, she brings up the laptop. She pours the water and opens the pill bottle only to be surprised when her caregiver arrives at the house. Spilling the pills on the floor, the audience knows her chance is gone forever—that Alice has now lost all possibility for autonomous action. This raises the question as to whether Alice-with-later-stage-Alzheimer’s should be subject to the desires and wants of Alice-with-early-stage disease. Has she become a different enough person that she should not be subject to the choices of an earlier person? This is an age-old debate in bioethics that has been discussed on both sides. However, seeing it played out in a “real” scenario is different than reading the philosophical discussions.
I felt that this moment of the dropping of the pills and loss of a possibility of self-directed action was one of the most tragic moments of the film. The thread that had made this woman Alice seemed to disappear, as she was no longer Still Alice. I also wondered about the tragedy that she had to hide this desire when she made the video instructing her future self to keep the act secret (the film does skip over what happens when someone has to clean up the spilled pills). Would it not be better to have a legal mechanism where early-stage Alice can leave a directive that would allow someone to help later-stage Alice to end life on her terms? The moment is tragic because society provides later-stage Alice no way to be Still Alice and true to her capacitated desires. Even in places where assisted suicide is legal, Alice would not have been eligible. With a potentially 10-year or longer prognosis, she would not be “terminal,” at least not yet and when she met the conditions that made life no longer worth living, she would not have been competent to consent. The choice becomes to accept becoming a person that early Alice would never want to be, or to end her life before she wanted to.
Many people will disagree with me and will breath a sigh of relief that Alice fails in her suicide attempt (and as my physician-spouse pointed out, the drugs used would have been unlikely to kill her anyway). For some people, life, no matter its quality, matters. For some, suicide is always an immoral act. For some, Alzheimer’s is a disability and no one should be dismissed or seek suicide when there are ways to help them. I respond that early-stage Alice saw what her future could be, at its best, and she rejected it. The integrity of the central character of Alice should be allowed to decide her future.
Watching the film is a moving and very personal experience. Walking out with my companions, one found herself crying and unable to speak. Another said he kept taking the “memory tests” that Alice creates for himself and at age 39 he worries that his little lapses in memory could be Alzheimer’s. All of us, though, had a very personal reaction to a film that made us think—hallmarks of successful art.
Still Alice joins a growing list of moving films that try to show the experience of Alzheimer’s from the patients and families points of view. Iris (2001) is a biography of British novelist Iris Murdoch and her partner John Bayley. Away from Her (2006) is the story of a man dealing with his wife being in a Alzheimer’s care unit where she becomes someone else to the point where she no longer recognizes him and falls in love with another patient. Others include The Savages (2007) about siblings caring for a parent with dementia, Aurora Borealis (2006) about a patient who needs more care than his wife can provide, and The Notebook (2004) about a husband who tries to help his wife with Alzheimer’s to remember their life together, to name a few.
The title itself is intriguing. Still Alice, on first glance, seems to elicit the idea that later-stage Alice is still the same person as she always was. As I discuss earlier, that may not be true. On another level, Still Alice, may mean that this vibrant, ambitious, go-getter of a person who never stopped moving whether giving lectures, writing books, or preparing meals for her family, has stopped. She has become still. In this sense, she has ceased to be Alice-of-the-world and becomes Alice-outside-the-world. She no longer moves, no longer makes a sound, just is. And that Still Alice is one that Professor Howland never wanted to be.