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Saturday, August 15, 2009

The History of Soylent Green

by digby

As a member of the generation who is becoming deeply enmeshed with issues of end of life care with our aging parents, I cannot tell you how frustrating it is to have the issue so distorted by the wingnuts, misreported by the press and basically relegated to a political football when it's such a heart wrenching personal issue. I deeply resent the fact again that these people think they have a right to dictate their personal beliefs to everyone else. I honestly don't care if they believe they have to be cryogenically frozen through millenia so that they might be reanimated by our alien overlords when they return to earth and I would really appreciate being given the same autonomy and respect.

One of the effects of this outrageous nonsense is that we are going to have to relitigate, at least in the political dialog, something that has already been settled.

Here's some history of the issue from the California perspective:

Medical decisions near the end of life have provoked national controversy for many years. Historically, doctors persisted (from personal conviction or professional obligation) in keeping patients alive by artificial means, regardless of the expressed wishes of the patient or family.

To its credit, California was the first state in the country to pass the Natural Death Act in 1976, allowing patients to indicate in writing if they did not want their life prolonged when they were terminally ill. Later, the durable power of attorney for health care allowed people to choose a surrogate who could make decisions for them.

In 1991, Congress passed the Patient Self-Determination Act, which not only reinforced that adults (or their designated surrogates) have a right to accept or refuse medical treatment, but also required most health care organizations to provide information to patients about these rights and about advance directives.

California's advance directive forms have continued to change over time, more attuned to the needs of patients and their loved ones. But the intent of these forms is unchanged: the rights of patients to decide when medical treatment is more burden than benefit.

Yet the interface of personal wishes, medical practice and legal authority is never simple. In the early 1990s, a new controversy arose when some doctors and nurses objected to providing endless life-prolonging interventions to dying patients whose families insisted on "doing everything." Where families saw hope, health care professionals saw torture and futility.

Facing two different dilemmas – doctors who did not give patients the options they needed and families with unrealistic expectations – Sacramento began in 1994 what became the first large-scale community-based project in the country to seek a broad consensus on the decision-making process for terminally or irreversibly ill patients.

Called ECHO – Extreme Care, Humane Options – this two-year effort involved committees of health care professionals from every hospital in the region. Nearly 1,000 local residents also provided their input on the changes needed to assure that treatment decisions reflected the wishes of informed and involved patients and families.

In early 1997, the ECHO Community Recommendations were published with specific strategies for hospitals, health professionals, health plans and medical groups. Endorsed by local hospitals, these recommendations advocated communication, education and decision processes designed to respect, not defy, the values of patients and families without undermining the professional standards of physicians and nurses.

Within several years, every hospital in the greater Sacramento region began palliative care services, physicians were taught communication skills and community members attended workshops on advance care planning. In 2001, a local coalition was formed to help sustain and expand these educational programs.

Obviously, it's time to turn back the clock. Everything's gotten just a little bit too rational and the need to expand this humane and necessary approach to the end of life decisions in this era of advanced must be stopped:

What does it have to do with the current controversy? The proposed legislation requires that Medicare compensate physicians for their time talking with patients about advance care planning – in effect, their goals and values, treatment preferences and who they would want to speak on their behalf if they cannot make decisions for themselves. It provides incentives for physicians to become more skilled in end-of-life care and encourages palliative care programs for patients needing and wanting those services.

All of this is voluntary, not mandated.

This legislation would not be wasted. In a telephone survey sponsored by the California HealthCare Foundation in 2006, 67 percent of Californians would want to die at home, yet only 27 percent actually do. Eight out of 10 people say it is "very" or "somewhat" important to write down their end-of-life wishes, but only 36 percent actually have written instructions.

And these right wing neanderthals want to make sure that doesn't change. These hysterics don't care what the elderly actually want --- if these poor people have to spend weeks hooked up to machines in sterile hospitals, in misery and horrible suffering, alive only in the most expansive definition of the term, it's worth it because Obama is a Kenyan Hitler and they have to "break him."

It's enough to make me want to go to a Town Hall and yell at somebody.

h/t to bb