About the author: Charmaine Manansala is political director for Compassion & Choices, the nation’s leading advocacy organization working to improve care and expand choice for the end of life. Charmaine has been living with multiple sclerosis for 15 years and previously served as a senior advisor to House Leader Nancy Pelosi on Medicare, Social Security, disabilities and labor.
A movie called Me Before You looks like a blockbuster love story, but it has become a lightening rod for activists who object to its portrayal and treatment of people living with disabilities. The film is a romance between a commanding young man, Will Traynor, who has been quadriplegic since an accident two years before, and an effervescent young woman, Louisa Clark, hired by Will’s mother to lift her son’s spirits. Louisa doesn’t know it, but her job is also to reverse Will’s decision to end his life.
Will Traynor’s decision to receive euthanasia in Switzerland raises the question of when and whether a life can be deemed no longer worth living, and disability activists are rightly protesting the film’s conclusion that Will’s life as a quadriplegic is not. I agree with them. I am always saddened by the suggestion that having a disability or living with a disability justifies suicide. I want to echo my fellow disability activists’ viewpoint that this plot reinforces clichés and assumptions about paralysis and quality of life, and reiterate their message that the vast majority of people with disabilities, myself included, live vibrant, meaningful lives and are not suicidal.
I now work at an organization whose mission is focused on end-of-life issues. Because end-of-life stories inspire passion all around, discussions about them need to be informed by facts and the right terminology about terminal illness, end-of-life medical options and public policy.
The first fact I want to make clear is that euthanasia is illegal in the U.S., as it is everywhere except a few European countries. Voluntary Euthanasia is a physician administering life-ending medication to a person who requests it. Importantly, no influential people or groups, including mine, are trying to make euthanasia available in the U.S.
Now, there is another end-of-life decision that gets confused with euthanasia and suicide, but is very different: medical aid in dying.
Right now, medical aid in dying is available to terminally ill, mentally capable adults with a prognosis of six months or less to live in Oregon, Washington, Montana, Vermont and California (beginning June 9), and it is under consideration in many other states. While the rules vary slightly by state, generally, a dying person can, after a lengthy review process, receive a prescription from their doctor for medication they can self-administer in their final days or weeks if their suffering becomes unbearable.
With the public light now shining on the issue of euthanasia, unfortunately, some people who oppose aid-in-dying laws are trying to paint them with the euthanasia brush. I want to make it very clear that aid-in-dying laws have nothing to do with people living with disabilities. Medical aid in dying is not available to people who are living with a physical disability – unless they are terminally ill with a prognosis of six months or less to live and capable of making an informed medical decision. That is, Will’s disabilities would not qualify him for aid in dying in the U.S.
Having limited physical mobility, being dependent on others for care or requiring daily care does not qualify a person for medical aid in dying. Nor does depression or other mental illness. In fact, mental illness and mental incapacity disqualifies a person from accessing aid in dying, even if they are terminally ill. It is only for people who are clearly dying, and suffering unbearably in the process.
Will Traynor’s character in Me Before You could not get an aid-in-dying prescription anywhere in the U.S. because he is not terminally ill. Aid in dying legislation defines terminal illness as likely to die within six months. This is the same standard for the transition to hospice care. Medical aid in dying involves medication administered by the person, to themselves, to make the dying process less agonized. No one else makes the decision or administers the medication, and patients typically do so only after years of often difficult treatment for cancer or some other fatal disease.
Will Traynor’s character could not use medical aid in dying to end his life here in the U.S. because our laws recognize the fundamental difference between living with a disability and dying of cancer or other disease. Lawmakers here are considering aid-in-dying laws only for adults who are terminally ill. The distinction is so clear, I have not seen any American law-making body consider eligibility criteria other than the combination of terminal illness and mental capability to make an informed health care decision.
Me Before You is being marketed with the message to live boldly, and some may view Will’s choice as bold. Others, like me, disagree with his decision, and have profound sympathy for his mother and her efforts to save his life. This character’s decision raises questions, which Americans can and will discuss. Let’s just be sure we do so with accurate terminology and an awareness of the facts about America’s policy debate on medical aid in dying.