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Janesville man develops program that tackles end-of-life decisions

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JAMES P. LEUTE
January 8, 2012
— There's little doubt that advances in medical technology are extending both the length and quality of life for patients.

But those same advances also are creating difficult end-of-life decisions that often lead to exorbitant health care costs.


With nearly four decades of experience in health care practice, management and consulting, John Macek knows the dilemma well.


"Technology and life support today can keep someone alive indefinitely, but the question is, ‘Who is paying the bill?'" said Macek, a Janesville publisher, consultant, author and frequent contributor to Corporate Report Wisconsin, a business trade magazine.


"We've gotten so wrapped up in the concept that technology beats all that we've made ourselves slaves to it, and that runs up medical costs."


Macek has developed an advance directive designed to help doctors, patients and their families stay on the same page when considering end-of-life decisions.


An advance health care directive is a set of instructions specifying what actions, if any, should be taken if a person can't make decisions for himself or herself. Sometimes taking the shape of a living will or power of attorney, it appoints someone else to make decisions on the patient's behalf.


"My Life Preferences" is not a static document that's filled out once and filed away for future use, said Macek, who spent 30 years in management settings, including 17 as chief executive officer of a variety of organizations.


Instead, it's a set of 32 questions that are answered with a scale of responses ranging from "strongly disagree" to "strongly agree." It sets the stage for ongoing discussions between the patient, his or her spokespersons and a physician. It can be altered as situations change, either by a patient's attitude or new medical technologies.


The Rev. Doug Dowling, chaplain at Mercy Hospital and Trauma Center, said more and more people are using some form of advance directive.


"But it's still a little like a will," he said. "We should all have one, be we all don't."


Dowling said Mercy provides patients with advance directive information at the hospital and has it available at the system's clinics.


"We encourage people to complete the information," he said. "Even if you're having a minor procedure, you never know when you could have a stroke, heart attacks or something just as serious."


Ralph Topinka, a Mercy vice president and general counsel, said patients are sometimes daunted by end-of-life decisions.


"People get confused and think they need to see a lawyer to have this done," Topinka said. "They don't need a lawyer to fill these out.


"One of the hardest things is convincing people that they should consider this and fill these things out while they're still capable."


While advance directives and durable powers of attorney are not new, Macek believes "My Life Preferences" is unique because it's offered as part of a person's health care package at work.


Much like annual health assessments and other healthy living programs, "My Life Preferences" is offered as an incentive that will make decisions easier for employees and reduce health care costs for employers.


For example, he said, employers might reduce the premiums employees pay if they opt to participate in "My Life Preferences."


First and foremost, Macek said, the directive gives employees control over their health care decisions. Saving an employer money is a secondary outcome.


And, he said, there are no right or wrong answers on the form.


"Any of us can face any number of situations, accidents or tragedies that render us to a state from which we'll never return," said Macek, a clinical social worker by training who also has served as a citizen member on Mercy's ethics committee.


"We've come to respect life and want to maintain it, but the problem is often that no one knows for sure what the patient wants. We keep people alive, but do they want to be kept alive? In doing so, we are spending hundreds of millions of dollars, and in many cases it's employer health plans picking up the cost."


Macek said studies have shown that while 30 percent of Americans have advance directives, 62 percent of them fail to give them to their physician. The result is that less than 2 percent have completed the loop to assure control over their health care should they become ill and unable to express their desires.


That means control is defaulted to a medical delivery system that Macek said is ethically bound to keep people alive.


Macek will roll the plan out to employers in coming months. For a one-time fee of $1,500, employers purchase a license for "My Life Preferences." They then can use the tool as part of their health care package.


"The challenge is how to get people thinking about end-of-life situations," he said. "Do the doctors know what I want? Does my family know?


"Do I know? Health care is dynamic, always changing, and my attitudes toward life might change as health care changes.


"'My Life Preferences,' I believe, really breaks new ground because it's designed to be continually updated or changed."



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