Plan your end-of-life care or others will do it for you

Baltimore Sun photo by Glenn

Article from The Sun

December 24, 2011 | Jay Hancock

The way Dr. Dan Morhaim describes it, the hardware of prolonging lives is far more advanced than the software.

Ventilators, chemotherapy, pills, transfusions, grafts and transplants help keep people going for years beyond what their great-grandparents could expect. But the philosophy of end-of-life care, the hard job of looking death in the eye, seems stuck in the pre-penicillin age.

All that medicine "has distanced us from the understanding that we're going to die," says Morhaim. However, he cautions in "The Better End," his excellent new book, "despite the superb medical care available in the United States, our death rate remains the same as that of the poorest nation on earth: one per person."

Americans seem determined to deny that statistical certainty. We can't even say "death" or "died" these days. The deceased is squeamishly said to have "passed." Discussions about how to reduce wasted spending on end-of-life care are decried as "death panels" that would cull the saved from the condemned. Few of us have even seen a dead person who wasn't plumped, coiffed and rouged for the mourners.

But if you don't plan your own end, somebody else will do it for you, Morhaim vividly shows in his book, subtitled "Surviving (and Dying) on Your Own Terms in Today's Modern Medical World." And there's a good chance it'll look like something neither you nor your family would have wanted.

Morhaim is well-qualified to write "The Better End." Years ago he watched his stepfather, failing in body and mind, reject kidney dialysis so he could die at home. The peaceful contrast of that scene with that of a hospital, where "people died tied to machines and monitors, in the company of strangers," stayed with him.

As a state delegate from Baltimore County, Morhaim knows his way around a Medicaid budget. He was co-author of a first-of-its-kind study showing that only about a third of adult Marylanders had completed living wills or other "advance directives" spelling out how they want to be treated on the borderlines of death.

And in more than three decades as an emergency physician, Morhaim saw time after time what happens when the medical-industrial complex decides to "save" the patient no matter what.

"Just about every health provider I know who works in emergency or critical care medicine has completed an advance directive," Morhaim writes. "Why? Because we've seen what happens when people don't. We've seen the people get something called 'care,' when it's really closer to torture."

He doesn't discount medicine's ability to effect wondrous cures and bestow years of extra, high-quality life. But "we are certain that there comes a time," he writes, "when enough is enough."

The system doesn't know when enough is enough, however. It's set up to keep lungs lifting even when there's little hope of a decent life. When relatives tell doctors they want "the very best care" for a loved one, what they're really ordering often turns out to be extra weeks or years of expensive misery.

Read about the 92-year-old patient Morhaim calls Alberta, kept alive for almost two years through numerous humiliating interventions, increasingly out of her mind with dementia and strokes, at a cost of $160,000.

Many patients want that kind of care, and they have every right to it, Morhaim states plainly. But many don't, and the money spent on keeping them alive contributes to soaring and increasingly unaffordable health care expense.

He distinguishes between the financial costs of excessive treatment and the human costs, but they are inseparable. Economists know that for every dollar spent there is an opportunity cost, a missed chance to spend the money better somewhere else. Dollars wasted on end-of-life care aren't available to pay for education or buy health coverage for 50 million uninsured Americans. That's a human cost, too.

About one-fourth of Medicare's nearly $500 billion annual budget is spent on patients in the last six months of life, according to the Dartmouth Institute for Health Policy and Clinical Practice. Dr. Donald Berwick, who resigned as Medicare and Medicaid director this month, said in a farewell speech that as much as one-third of health care spending is wasted.

If people spent a fraction of the effort that they devote to planning their wedding on planning their death, they could help themselves, their family and their society. Read Morhaim's book and fill out an advance directive for your New Year's resolution. No matter what your age. Google "Maryland advance directive" to be pointed to the attorney general's website with all the information.

"This is all about individual responsibility, individual empowerment," Morhaim said in an interview.

Humans are the only creatures that can contemplate their own demise. They might as well get ready for it. The best way to avoid an unwanted death panel is to set up your own