The end-of-life and death of Terri Schindler Schiavo, the Florida woman whose husband and parents battled for years over whether she would want to live in her severely cognitively impaired condition, brought the issues of "right to die" and euthanasia into the media spotlight. The uproar over that case largely drowned out news of similar incidents of parents fighting for children who doctors dismissed as unworthy of life-preserving treatment. In Houston, Wanda Hudson lost her fight to have her five-month-old son, Sun, kept on life-support; though the boy, born with a rare and fatal form of dwarfism, had already outlived the doctors’ earliest expectations for him, his continued treatment was deemed futile by the hospital and the court, and he was disconnected from a respirator against his mother’s wishes. In Utah, the parents of 6-year-old Jesse Koochin successfully prevented a hospital from declaring their cancer-stricken son brain dead and ending life support, and were allowed to bring him home, where he died a month later.
Who decides when a life no longer has value? Doctors? Patients? Spouses? Parents? Insurance companies? What if there are differences of opinion? Are doctors ever motivated by cost factors? Are patients sometimes in an emotional state that makes good judgment unlikely? Are parents ever motivated by unreasonable hope, spouses by an understandable need to move on? Might doctors ever slant the truth to make families comfortable with end-of-life decisions? Might insurance companies possess a narrower view of what “value” means than most of us would be comfortable with? These are questions that affect not only end-of-life issues, but also quality-of-life issues for persons with disabilities. They are therefore of grave interest to parents of children with special needs, who must make so many choices for their children with such conflicting advice.
In 2012, the mother of a little girl with Wolf-Hirschhorn syndrome caused an outcry when she blogged about a meeting in which a doctor made it clear that her daughter could not get a kidney transplant -- even if the parents found a donor, even if she'd die without it -- because her intellectual disability gave her no quality of life. For more on Amelia Rivera and a very bad meeting at the Children's Hospital of Philadelphia, read my post on the Internet outrage that followed and the hospital's eventual apology, where you'll find links to other articles on the subject all around the Web.
There’s danger when we start drawing a line to divide lives that have value from lives that do not. Where do people with severe disabilities fall? Their families might place them firmly in the “value” category. As parents of children who may not respond in a recognizable way, may never move independently, may require expensive medical care throughout their lifespan, we understand better than most that even lives that seem most remote from society’s notion of normal can be filled with love and grace. We are also all too painfully aware of how wrong doctors can be, and how often their dire predictions do not come to pass.
Yet society tends to accept the doctor’s view of things, and even people of good will can insist that if there is no hope of a person ever “recovering” -- if they themselves cannot imagine ever living in such a way -- a life can be considered to have no remaining value. By this standard, we accept that the terminally ill may wish to kill themselves, that people with severe physical disabilities may wish to kill themselves, that those with severe cognitive disabilities may be better off dead. It seems reasonable, responsible, merciful. But is it really true that those lives have no value? Is it possible that these judgments we make for our own comfort and peace of mind are hasty and ill-informed?
Disability advocates think so. Their voices have not been heard in the furor over Schiavo’s passing, but theirs are the most relevant. In the end, hers is less a right-to-die case than a disability-rights one. What are the rights of a cognitively disabled person? Are they allowed to waive them? If they are unable to do so, can others waive them on their behalf? And if so, does that put every helpless, voiceless person who is dependent on others for treatment and care in peril? As parents of the helpless and voiceless, we must find a way to stand up for their rights -- and be sure we are respecting them ourselves.