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Death be not proud, said the poet; death be not soon,
say most of us; but death is something we can nonetheless plan
on and plan for, said experts at the STEP forum "One Guarantee
in Life — Death: Demystifying the Dying Process," held Dec.
8 at the Natcher Bldg.
Our cultural squeamishness about facing up to the
reality of death is no better handled by caregivers than by commoners,
suggested the six panelists. Doctors fight it tooth and nail — often
taking extreme and costly measures — and tend to regard death as a professional failure. Ethicists
are all for respecting all kinds of cultural traditions at the
end of life, but whisper more loudly in our ears now, "At what
financial cost to society?" And many people never get around to
the routine paperwork and consultation that can prevent confusion
and pain at the hour they bow out.
||STEP forum panelist Dr. June
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
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
The full forum is available for viewing at www.videocast.nih.gov.