When they heard that the Schiavo family is continuing its battle over end-of-life care, many people may have spontaneously groaned. After all, last year the nation recoiled from the husband vs. parents war over whether to remove the feeding tube sustaining poor Terri Schiavo. Congress compounded the disgust by using the family’s tragedy in the culture wars. Now that Terri’s husband has formed a political action committee, and her parents and surviving siblings created a foundation, plenty of people might wish to cry, “Enough.”

But there is another way to view these developments. It is possible that the family’s continued engagement provides constructive energy. At the least, the struggle for better end-of-life care has at last become a campaign issue. If this debate lands in Congress, that is potentially good news for every living American.

A quick history: Terri was a vegetable, wholly dependent on a feeding tube to survive. After more than a decade, her husband Michael wished to remove the tube and let her die. He said Terri never wanted to be kept alive by such means. Her parents objected, saying she recognized them and responded to stimuli. They also prayed for a miracle. The dispute went to court. Outsiders objected, but when two parties cannot agree in America, a courtroom is where they belong. The courts in Florida, where Terri lived, were remarkably consistent. From the celebrated cases of Nancy Cruzan and Karen Ann Quinlan to lesser known disputes, there were ample precedents to draw upon. In each venue, judges found that a husband would be more likely to know a grown woman’s medical desires than her parents would.

That is when Congress intervened. For the first time in the nation’s history, the House and Senate convened in a special session concerning a single individual. The bill that passed on Easter weekend 2005, which President Bush signed into law that Sunday evening, brought the case before federal courts. But of course those judges were also versed in the existing case law; they sided with Michael Schiavo in every instance. The U.S. Supreme Court, when approached to hear an appeal, did not even deign to take up the case. There was no nuance to be parsed; the law is clear. In all, the courts were informed where Congress was ignorant.

Medical workers removed the tube, and Terri died days later. An autopsy found her brain utterly atrophied. Both her husband and her parents deserve condolences and sympathy.

Of course, the need for better end-of-life care did not die with Terri. For people who are terminally ill, overly aggressive clinical interventions, bankruptcy from medical expenses, and unnecessary suffering remain commonplace.

Now, the New York Times reports, Michael Schiavo has formed a political action committee (www.nytimes.com/2006/08/16/washington/16schiavo.html). The PAC has raised $26,000 without making solicitations, contributing most of the money to Democrats running in Florida, Colorado and Texas. “Politicians in Washington, D.C. and Florida abused their public trust by forcing the government in the middle of my family tragedy,” Michael says on the PAC’s web site (www.terripac.com).

Meanwhile Terri’s other family members raised far more money, establishing a foundation (www.terrisfight.org) to guard “the rights of disabled, elderly and vulnerable citizens against care rationing, euthanasia and medical killing.”

From their promotional materials at least, both sides are right: Congress did inject itself inappropriately, and people in vulnerable medical conditions do need better help.

About 6,300 people die in this country every day. Around 3,000 of those lives end in hospitals – where pain is routinely under-treated, where unconcern with the patient’s emotional condition and disregard for the patient’s family are the norm, where advance directives are often ignored, and where most lives end following the withdrawal of excessive and futile medical technology. About 2,000 more lives end each day in nursing homes, where again untreated pain is common, where boredom is fact of life, where food is substandard and care insufficient, and where too many residents are subject to neglect or abuse.

Hospice and palliative care offer ideal antidotes for these woes, and provide fulfilling completion to about 1,200 people every day. But these programs are underfunded, hard to gain access to, and not available to everyone who could use them. It will take a consumer-driven uprising – something like 100,000 Schiavo survivors – to make these remedies as ordinary as they ought to be, as everyday as aspirin.

Yet this level of change is possible. Once upon a time, penicillin was miraculous. Once upon a time, smallpox was a major cause of mortality. Improving end-of-life care does not require inventing new drugs or building new hospitals. All it takes is an engaged public.

Imagine if Americans demanded dignified and compassionate end-of-life care from their doctors and hospitals. Imagine if they treated care of people in their lives’ penultimate moments as a serious and substantive campaign issue. Imagine if Congress, instead of passing a bill to exacerbate one family’s suffering, met to expand the existing patients’ bill of rights – adding decent pain management and guaranteed access to hospice. Imagine if President Bush, instead of signing the Schiavo bill with a flourish, stood before the cameras and inked his own living will – thereby leading the nation in embracing this important tool for maintaining control at the end of life.

The decisions by people who loved Terri to participate in the political process is merely an exercise of citizen engagement, a fundament of democracy. However, both sides’ involvement also makes another important point: End-of-life care in America will only improve when the public demands it.