Laura Hershey of Englewood, Colo., is a national advocate for the rights of the handicapped.
When people discuss "end-of-life care," they often invoke scenarios meant to sound ominous: tubes, breathing machines, physical dependency. I'm not scared by those images, having lived for 46 years with increasing reliance on technological and human support. A ventilator aids my breathing. Personal care assistants bathe, dress, and feed me. I operate my wheelchair by blowing into a tube. And my life is far from over. Of course, none of us can know for sure, but I plan on being around for a while.
That plan has not always gone unquestioned. Tactless acquaintances have told me they would kill themselves if they became as disabled as me. More chillingly, the last time I was hospitalized for pneumonia, I had two different nurses ask if I had a DNR—a "do not resuscitate" order. I replied that I had come to the hospital to get better, not to die.
Unfortunately, that expectation of medical treatment can run up against physicians' opposing views and hospitals' rules. In dozens of states, laws allow doctors to unilaterally deny lifesaving treatments that they deem "futile," even if the patient or a surrogate decision maker wants care continued. Some people actually advocate this, as a way to ration healthcare—limiting the resources available to sicker patients, to extend basic care to more healthy people. Reviews by hospital ethics committees usually uphold physicians' judgments. Then, if the family cannot find another hospital that will agree to treat, the patient may be allowed to die.
Who should make medical decisions? The individual in the hospital bed, with everything at stake? The family, with their complex and sometimes contradictory concerns about love, obligation, and money? The doctor, with a vested interest in achieving rigidly defined "successful" outcomes? Or hospital administrators, with one eye on the bottom line?
The situations that worry me most are those involving different definitions of "futile" and "effective." Some nondisabled people think that having a disability is an intolerable state and that medical care can't be considered efficacious unless it restores lost physical or mental functions. In one glaring example, the University of Wisconsin Hospital denied antibiotics to two developmentally disabled people admitted with pneumonia. They needed lifesaving treatment, which was withheld, causing the death of one man. The other finally did receive treatment, at the insistence of his family, and survived. A disability rights group is suing the hospital for discrimination.
Such discrimination in medical settings is all too common, often based on a narrow concept of "quality of life." Terrie Lincoln, a fellow disability rights activist, broke her neck 12 years ago in a car accident. Doctors urged her mother to "pull the plug," because her disability would supposedly deprive Lincoln of independence and pleasure. Sherry Lincoln Sturm refused. Five months later, her daughter was released from rehabilitation. She had a significant disability but was alive and happy to be so. She now has a full-time advocacy job and is earning a master's degree in social work.
Her story resonates with disabled people. In this economic and social climate, we fear that medical practitioners will stop short of saving our lives. More and more, despite rhetoric about "patient autonomy," the decision to withhold treatment is imposed upon patients. Especially vulnerable are those unable to communicate their wishes.
"Quality of life" arguments are used to bolster these decisions, but the real driver may be cost concerns. While insurers and private hospitals generate huge profits, our healthcare system fails to serve many Americans. It's true that sometimes the opposite happens: People are pressured to accept treatments they don't really want. But overall, the right to refuse treatment is extensively protected by statute and case law and respected by medical practitioners. In contrast, the right to lifesaving treatment is not specifically protected and is no longer necessarily the default option.