In the 2014 film Still Alice, Alice Howland, a prominent linguistics professor at Columbia University, is diagnosed with a rare case of inherited, early-onset Alzheimer’s disease. The film opens with Alice celebrating her 50th birthday with her scientist husband, John, and her three grown children, Anna, Charlie and Lydia. The scene palpably illustrates that she has built a beautiful life for herself over five decades.
However, after the celebration, she begins noticing symptoms of memory impairment. After getting lost on campus while going for her usual run, Alice makes an appointment with a neurologist and tells him about her memory problems. After a series of tests, her diagnosis is confirmed. Her husband is initially in denial, and complicating matters, they are informed that the disease is genetic, and their children have a 50/50 chance of having inherited it. They struggle with telling their children both about her diagnosis and about their own risk of developing early-onset Alzheimer’s.
Inevitably, Alice must retire and requires around-the-clock care. She can no longer complete daily tasks and fails to recognize her family members on a consistent basis.
Throughout the film, most of her family has great difficulty accepting what her diagnosis will mean for Alice and for themselves. Her husband takes a job in another state as he is unable to cope with Alice’s decline. Only her youngest daughter, Lydia, has the capacity to face the situation and care for her mother in a respectful and loving way as her condition deteriorates. Several times Alice tries to bring up what will happen to her when she has lost the ability to recognize her family or care for herself, but these discussions are quickly shut down. She even takes a tour of an assisted living facility for people with memory impairment but ultimately does not mention it to anyone or make any concrete plans.
Both the stigma associated with Alzheimer’s disease and the family’s unwillingness to face the diagnosis deprives Alice of an opportunity to choose how she will be treated in the end stages of the disease. We are left with the impression that Lydia’s kindness is the only thing safeguarding her mother’s dignity and well-being.
The film raises important questions about the responsibilities of physicians and surrogate decision makers when a patient has a progressive disease involving cognitive impairment. For instance, how much, and in what ways, should patients be involved in their own treatment decisions? Should patients be able to leave instructions for what they want at different stages of their disease? What standards should surrogate decision-makers use when they make decisions on behalf of others?
AMA Code of Medical Ethics Opinion 2.1.2, “Decisions for Adult Patients Who Lack Capacity,” states that “physicians should involve patients in health care decisions commensurate with [their] decision-making capacity… [Physicians] should engage patients whose capacity is impaired in decisions involving their own care to the greatest extent possible.” In addition, it instructs physicians to assist the surrogate to make decisions based on “the patient’s preferences (if any) as expressed in an advance directive or as documented in the medical record; the patient’s views about life and how it should be lived; how the patient constructed his or her life story; [and/or] the patient’s attitudes toward sickness, suffering, and certain medical procedures.” Opinion 5.2, “Advance Directives,” further specifies that advance directives “are tools that give patients […] the opportunity to express their values, goals for care, and treatment preferences to guide future decisions about health care. […] They enable physicians and surrogates to make good-faith efforts to respect the patient’s goals and implement the patient’s preferences when the patient does not have decision-making capacity.”