Many people will put off the writing of a Living Will thinking that their
family will be able to agree on the most appropriate care. Countless press articles
suggest that the 30 minutes or so that it will take to prepare a Living Will is
time very well spent. Another article published this week demonstrates the anxiety
that end of life care decisions can place on a family.
As a Life Ebbs, the Ultimate Family Quarrel
October 28, 2004
PAM BELLUCK
NY Times
Geraldine
Reardon's medical nightmare sneaked up like a cruel and crippling ambush. Mrs. Reardon,
an otherwise healthy 66-year-old, went to the hospital last October for a routine
hernia operation. Days later, a ravaging infection set in. It corroded her fingers
and toes with gangrene and forced doctors to medicate her into a coma to spare her
unbearable pain.
But Mrs.
Reardon's condition did something else, too. It forced her daughter and son to decide
whether their mother should live or die. Should they authorize treatment that would
save Mrs. Reardon's life but involve months of surgery and the amputation of most
or all of her hands and feet? Or should they remove her respirator and feeding tube,
hastening her death on the assumption that she would rather die than live like that?
Mrs.
Reardon's daughter, Jacki Folger, and her son, David Reardon, sharply disagreed
over what to do. And the decision was made harder by their strained, complicated,
sometimes stormy relationship.
Ms. Folger,
47, was close with her mother and was an emotional anchor to family and friends
here in Lancaster, a rural community west of Boston. Mr. Reardon, 46, was working
to repair family wounds stemming from a past that included a long-ago conviction
for brandishing an ax at a police officer, and a court order granting custody of
Mr. Reardon's son to Ms. Folger.
The crisis
posed by Mrs. Reardon's condition and her family's rocky history was daunting but
hardly unusual, doctors and other experts say. Medical advances are forcing more
patients and families to confront ever more grueling choices about living and dying.
Such advances offer the hope of saving desperately ill patients but can also result
in patients surviving in such severely compromised conditions that families become
painfully confused.
This
inevitably exposes or creates family conflicts, which then make urgent medical decisions
even more difficult, a wrenching cycle that can tear families apart. In addition,
doctors often disagree about how to treat such patients, and living wills often
fail to resolve critical questions.
"Every
hospital in the country has families going through this all the time now," said
Dr. Erik Steele, vice president for patient care services at Eastern Maine Medical
Center in Bangor, where a recent case involved four siblings so divided over whether
to keep their 88-year-old mother alive that they first put her on a respirator and
then took her off it.
"This
is going to be an issue more and more for us, and I think it's an issue almost unique
to our generation," Dr. Steele said. "For the first time, we have this degree of
technical ability to keep people alive without the ability to always restore them
to good health. At the same time we have a much higher expectation of what health
care can do."
While
families often seem to pull together when dealing with treatable illnesses, they
often splinter over an end-of-life decision, experts say. Old frictions surface
and new ones form, based on family relationships and different ideas of what makes
a life worth living. Living wills, advance directives and health care proxies are
intended to resolve crucial questions about what a patient would want, but they
often fall far short.
In Mrs.
Reardon's case, a conflict between her children erupted quickly and festered. Mr.
Reardon wanted doctors to operate on his mother and keep her alive. Ms. Folger felt
strongly from past conversations with her mother that she would not want to live
under those circumstances. An uncle, Marc Gulliver, Mrs. Reardon's brother, said
that Mr. Reardon, who declined to be interviewed for this article, "was more remorseful
about losing his mother" because he had "unfinished business" to resolve with her.
"Their
relationship was beginning to get stronger," Mr. Gulliver said. "He was seeing her
more often. And suddenly to have her ripped away from him was very difficult."
Family
conflicts over end-of-life decisions are more likely to be personal than philosophical,
doctors, nurses and social workers say. They can reflect fault lines between relatives
or emotions long buried.
Many
practitioners who deal with such families have noticed a curious pattern: The relative
most distant or estranged from the patient is often the one most reluctant to let
the patient die.
Emotional
distance can aggravate things even more than physical distance.
"People
who have been long estranged from others, when they're at death's door, want to
come in and rescue them," said Dr. David Kaufman, chief of critical care medicine
at St. Vincent Hospital in Worcester, Mass., where Mrs. Reardon was treated.
Writing
a living will or designating a health care proxy or surrogate can help families
understand the patient's general inclinations and philosophy. But "some decision
will come up that you haven't discussed," said Dr. Karen O. Kaplan, president and
chief executive of Partnership for Caring, an organization that works to improve
care for dying patients.
At the
same time, Dr. Kaplan tells people making living wills, "you don't want to be too
specific - like saying no antibiotics, for example - because then you tie the hands
of your doctors."
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