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Healthcare Is In The Eye Of The Beholder,
And Should Be In The Hands Of The Patient

by Laura Hershey

HOME > HEALTHCARE

 

vocal protests at town hall meetings about health care reform | iHaveNet.com
Vocal Protests at town hall meetings about health care reform
(c) William Brown

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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.

Some prominent bioethicists, seeking easy scapegoats for escalating healthcare costs, increasingly question the value of providing care to people with disabilities, whose lives they (mistakenly) consider undesirable.

Read the case for healthcare rationing from Michael Tanner of the Cato Institute.

 

Follow the Healthcare Reform Debate -- Visit our Healthcare in America section

 

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What is the Actual Number of Americans Without Health Insurance
Bonnie Erbe

The number of Americans without health insurance the Obama administration and Democrats have used for more than a year now ranges between 40 million and 46 million -- at the upper end, that would be somewhere between 1 in 6 and 1 in 7 Americans. So, how many Americans are truly uninsured?

Why Obama's Failing Big on Healthcare Reform
Mortimer B. Zuckerman

Why does it cost the United States about $7,000 per person annually in our incomplete national healthcare system, while other major economic competitors provide universal coverage for about half that amount? The answer is quite simple: The federal government pays whatever the cost will be. Virtually every expert agrees that the root of our runaway health inflation is the fee-for-service approach.

Health Reform Fattens Big Insurance and Taxes the Young
by Bernadine Healy, M.D

Insurers agreed months ago to clean up at least some of their hated practices, such as denying insurance for prior illnesses and canceling coverage when someone gets sick. In return, they stand to get some colossal plums: a mandate not only that every American buy health insurance but that the mandated insurance be "comprehensive," another word for expensive.

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Healthcare - Healthcare Is In The Eye Of The Beholder, And Should Be In The Hands Of The Patient

 

(c) 2009 Tribune Media Services, Inc.

 

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