By William Colby

Between now and the coming elections, Americans are going to hear a lot about health
care. Universal health care. Importing Canadian drugs. Cuts in Medicaid. Fifty million
uninsured. Complex problems without obvious answers. Here's a campaign idea: Why
not start with a health care problem that we can fix - better care for all Americans at the
end of their lives? Why not ask the candidates about Margo?

Margo was an elderly, cheerful Alzheimer's patient. Each day she listened to the same
music, painted the same simple pastel shapes, randomly read from the same book. She
had no memories of her earlier life or even what had happened hours before on any given day, and she could make no new memories. When Margo first learned of her diagnosis many years ago, she filled out a living will making clear that if an infection came during her slide downhill into dementia, she did not want antibiotic treatment. She now has pneumonia. What should her family do? What should a compassionate, respectful, lifeaffirming society do?

The President's Council on Bioethics discussed Margo's case in its recent report, Taking
Care: Ethical Caregiving in Our Aging Society. The council reasoned: "The primary
moral obligation of caregivers is to serve the well-being of the patient now here, and to
ask not only what the patient would have wanted but what we owe the person who lies
before us."

Dr. Leon Kass, chair of the council at the time, has written elsewhere that for an adult
daughter to consent to the use of penicillin for her father with advanced Alzheimer's
when he contracts pneumonia would "demonstrate to her children what it signifies to love another in his gravest need, and to appreciate the blessings of health in the face of the miseries of disease." I respect Dr. Kass's work, writings, and extensive public service. But for me, the actions he describes do not signify love.

Dementia runs in my genes. If years from now my wife and four adult children have
watched me slide down the abyss of Alzheimer's to the point that I do not know them,
and an infection comes to me, I hope they say "no" to penicillin. That, to me, would
signify love, respecting beliefs I'd shared with them when I was most fully myself. The
whole purpose of medical treatment for me is to act as a bridge to recovery. When it
cannot, then medical treatment beyond that which eases suffering is not appropriate. I
find it wrong for my value system, and contrary to my religious beliefs, to say that
medically treating the infection in my demented body is something I "need" or somehow
such medical intervention is "loving me."It's not. Medicine's value to me will have ended.

These are not abstract questions. Of the 2.5 million deaths this year in the U.S., by far
the largest group, about one million, will be the frail elderly. An estimated 500,000 of
those frail elderly will suffer from dementia. And the numbers are poised to skyrocket -
the Census Bureau says that in 23 short years, in 2030, 44 of the 50 states will have the
elderly demographic that only Florida has now. The hard questions about end of life
issues are rising before us like a great wave.

Why would a savvy politician wade into such a seemingly sensitive debate? Simple.
Better end-of-life care is a problem we can fix. The solution is relatively simple. And it
will cost taxpayers nothing. Many have written about the contradictory numbers. I call it "the Disconnect." Over eighty percent of adults in the U.S., when surveyed, say that when the time of serious illness and dying comes, they hope to be at home, surrounded by loved ones, free from pain, free from the machines of modern medical technology.

The well-documented reality is nearly exactly the opposite: Eighty percent of us die in institutions, too often in pain, too often tethered to those machines we say that we don't want. Why the Disconnect? Because as a society we won't talk about dying and death.

Our doctors too often see dying as failure, despite its 100% eventual certainty. When we
gather at Thanksgiving our families would rather talk about football. But in places where
they have talked about dying, they've made progress. Oregon is a good example. The
discussion in Oregon began in the early 1990s, with a citizen initiative petition that put
the question of legalizing physician-assisted suicide on the ballot. Through two heavily
financed, contentious ballot campaigns and years of highly-public court challenges,
Oregonians talked about dying. As their former Governor Barbara Roberts said in 2005,
"Dying was discussed over dinner, in bowling alleys, at hair salons and barber shops, in
gyms, classrooms, and churches. Once families had opened those discussions, they
couldn't put the toothpaste back in the tube."

Perhaps surprisingly, physician-assisted dying has rarely been used in the eight years
since Oregon passed the law. The side effects of the social dialogue, however, have been remarkable. Oregon has the lowest in-hospital death rate in the country at 31%; hospice usage has increased dramatically; medical leaders have developed innovative programs for appropriate use of CPR and medical education, and more. Talking about dying improves how we die.

A study published in the February 2007 Journal of Managed Care confirms the power of
talk. Researchers developed a computer program to identify very sick patients in a large
California HMO population. Specially-trained nurses made phone calls and then home
visits to these patients to talk about medical care. The result: fewer ICU and emergency
room visits, higher usage of hospice and home care, with patients and their families
extremely satisfied with the care they or their loved one received. Moreover, the "life
span assessment" between the patients who received this intervention and those who did not (the control group) was the same. In other words, whether in the ICU or at home, all of these seriously ill patients lived about the same length of time. And, during the 18 months of the study, patients who received this intervention spent $18,599 less per patient on medical care than patients in the control group. With 2.5 million deaths each year in the U.S., that's a significant figure.

But it's not about the money. Talking about our views on dying protects, comforts, and
empowers those we love. Thoughtful care of the seriously ill and dying goes to the very
core of the service to fellow human beings that first drew many to the work of medicine.
I traveled to all corners of the U.S. last year, talking about dying and the law.
Everywhere, communities, medical providers, all involved, are thirsty for knowledge,
trying to navigate this brave new world of medical technology.
I'm convinced that this navigation will best take place through sharing stories with one
another - talking about Terri Schiavo, and the father across the street who fell and broke his hip, and Aunt Ruby's stroke. And Margo.

War, global warming, the economy - our country faces many challenges. As we begin
the remarkable democratic process of electing a new president, I want to know about all
of these issues. But wouldn't it also be fascinating to hear each candidate answer this
question: "What about Margo?"

Bill Colby is a Senior Fellow of the National Hospice and Palliative Care Organization and the lawyer who represented the family of Nancy Cruzan. He is the author of Unplugged: Reclaiming Our Right to Die in America.

For more information and free planning documents, go to www.CaringInfo.org or call 800-658-8898.

This article was originally published by the National Hopsice Foundation, an organization committed to leading global, philanthropic efforts advancing quality, compassionate, end-of-life care for all.

Republished with permission.