STEP forum panelist Dr. June Lunney

Dr. Karin Kirchhoff, Rodefer chair and professor at the School of Nursing at the University of Wisconsin, and perhaps more importantly, witness to what really happens in intensive care units, had perhaps the strongest take-home message: putting your affairs in order toward the end of your allotted three score and 10 is "the gift you give your significant others." She also pointed to sobering statistics on the ineffectiveness of cardiopulmonary resuscitation in the hospital setting — very few end up the better for it. About 20 percent of Americans will die in an ICU or shortly after transfer from one, she noted.

That's largely because Americans are living longer and dying more slowly, said Dr. June Lunney, associate dean for research at the West Virginia University School of Nursing. In 1900, the average age of death was 46, and the top causes were infection, accident and childbirth. In 2000, the average death age rose to 77, usually of heart disease, cancer or stroke. "There has been an exponential increase in the number of decedents who reach age 85 before dying," she reported. Her advice to those in the fourth quarter of anticipated lifespan echoes Kirchhoff: it's best to get your affairs in order.

Lunney's research shows that most Americans experience long periods of dependency before dying, and run about a 45 percent risk of disability in the last full year of life once age 65 or older. "Most of us bury our heads in the sand about this," she said. Thirty-four percent of the people in her study of end-of-life trajectories were likely to need almost constant care for the last year of life, she noted. "That should be a wake-up call for most of us."

Kirchhoff emphasized the importance of organizing financial records, building an emergency fund and reducing or minimizing debt. "We don't prepare for death as we do for other significant life events, like pregnancy," she lamented.

She advised that people in the autumn of their lives draft 4 key estate documents: a will or estate plan; financial durable power of attorney; living will; and health care power of attorney (HCPOA). Both health and long-term care insurance are also priorities.

But if you are only going to do one of these things, she emphasized, designate a health care power of attorney, a person (though definitely not a guardian) with whom you can freely discuss your wishes about treatment at the end of life. That discussion should be summarized in a document that can be shared by both the HCPOA and your personal care provider. And, like so many things in life, there ought also to be a backup person to play this role, said Kirchhoff.

Speaking at the recent STEP forum on dying and end of life were (seated, from l) Dr. Marion Danis of the Clinical Center; Dr. Karin Kirchhoff, Rodefer chair in the School of Nursing, University of Wisconsin; Dr. Alexis Bakos, NINR. Standing are (from l) Dr. Etienne Phipps, Albert Einstein Healthcare Network, Philadelphia; Dr. Bruce Himelstein, pediatrics professor, Medical College of Wisconsin; and Dr. June Lunney, associate dean for research in the School of Nursing, West Virginia University.

Bioethicist Dr. Marion Danis of the Clinical Center echoed the need for those approaching death to communicate ahead of time their thoughts and wishes to those closest to them. The focus at the often hectic and tense last chapter of life should not be so much on decision-making as on overall strategy of care. She advised, "Don't leave decisions entirely in either the family or physician's hands."

Interestingly, the "most frequent cause of unresolvable conflict at the time of death in my hospital is spiritual beliefs," said Dr. Etienne Phipps, director of the ethics consultation service at Philadelphia's Albert Einstein Healthcare Network. An anthropologist and folklorist, she described differing cultural perspectives on the end-of-life experience.

Not everyone lives to a ripe old age before dying, however. Dr. Bruce Himelstein, a pediatrician at the Medical College of Wisconsin, described a series of gaps in care for the estimated half-million children living with life-threatening conditions in the U.S., and the more than 1 million children with special health care needs. For example, whereas 1 in 4 adults will access hospice care toward the end of life, only 1 in 10 children will. And although pediatricians can define a population of kids with so-called "complex chronic conditions" involving at least the possibility of death, there remain no published guidelines on prognosis for pediatric conditions. "We're very poor at prognosticating death [in this population]," Himelstein said, which makes it difficult to tailor effective end-of-life care.

Asked, during a brief question period at the forum's end, whether some kind of spiritual belief is helpful in the case of a child facing death, Himelstein was unequivocal: "It absolutely does help.The whole course of events, even before death, is generally smoother if the family has some sort of transcendent spiritual connection. It's very helpful to families and children."

West Virginia's Lunney noted that, although a lightning-quick exit is "everyone's dream," it will be reserved for only a small minority of us. Himelstein suggested that the least fortunate circumstance is to die young, in a territory — at least as far as palliative care is concerned — not nearly as well explored as adult death. But since scripture says death will come "like a thief in the night," perhaps it's best to be ready at all ages, cultures and climes.

The full forum is available for viewing at www.videocast.nih.gov.

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