Case
Raises Awareness of End of Life Planning Concerns
Written By: Attorney
Jeffrey A. Marshall, CELA*
Originally
Published October 30, 2003
In Florida
last week, Terri Schiavo was reconnected to feeding tubes.
Her case brought the heartbreaking issues and conflicts that
families confront in making end-of-life decisions for incompetent
loved ones back to public attention.
These problems are especially acute where, as with Terri
Schiavo, there has been no advance planning.
In 1976, Karen Ann Quinlan's
parents' battle to remove their daughter from life supports caught
national attention. In 1990,
it was
Nancy
Cruzan's plight that reached both the front pages and the U.S. Supreme
Court. And now, in 2003, it
is Terri Schiavo's tragic turn.
Since 1990, Terri Schiavo has been in
what her doctors have determined to be a "persistent vegetative
state." She is being kept
"alive" only through the use of feeding tubes.
Unfortunately, because Mrs. Schiavo did not make a written record
of her wishes in advance, it has fallen to judges and politicians to
decide whether this treatment should be continued or withdrawn.
A long, horrific, and entirely avoidable legal and political battle
has thus added to the suffering of her husband and parents.
On October 15th, Mrs.
Schiavo was removed from her feeding tube, apparently ending a decade long
struggle by her husband to allow her to die.
Mr. Schiavo had the support of the state and federal courts
throughout his battle, but was opposed by his wife's parents.
Then, just as it appeared that this sad case was finally going to
end,
Florida
politicians decided to extend it.
Florida
passed legislation which gave Governor Jeb Bush the discretion to overturn
the court orders and direct the reinsertion of a feeding tube.
Within hours the Governor signed the order, thus continuing Mrs.
Schiavo's marginal existence and expanding the controversial litigation.
The issues are difficult and
troubling. But, Terri
Schiavo's case is exceptional only in the amount of public controversy
and political interference it has engendered. These kinds of circumstances
don't just arise every 12-14 years - they confront families every day.
End-of-life decisions need to be made whether or not the patient
has planned in advance. But, when there are no advance directions from the
patient, the decisions are much more difficult and troubling and also more
likely to reach the courts and public attention.
There is a long established legal and
medical consensus that competent patients have the right to refuse
unwanted medical treatment. And
there is also an established consensus that incompetent patients have the
same right to refuse treatment as do competent patients.
The problems with incompetent patients, of course, are how can we
understand their desires and who has the authority to exercise their
rights.
What can you do to assure that your
values are respected if you are ever unable to make health care decisions
for yourself? It is critical
that you create a well-considered advance directive.
Then, if you ever lose the capacity to speak for yourself, better
decisions will be made and your family's doubts, burdens and guilt will
be lightened, because you took the time to provide instructions and
authorization so that someone will be able to speak for you.
The most popular advance planning tool
is the "living will." However, for most residents of
Pennsylvania
, having a living will is insufficient - the document of choice should be
the health care power of attorney. (For more information on health care
powers of attorney and living wills, check out our Advance
Care Planning Resource Center.)
According to published reports, fewer
than 1 in 5 adults have an advance directive.
If you are one of the four in five who has not done advance
planning, you are leaving yourself and your loved ones open to the unkind
fate of courts and (as shown by the Schiavo case) of ideologically or
politically motivated state politicians.
In
Pennsylvania
, the chance that your family will wind up in court is substantially
greater than in many other states, because
Pennsylvania
laws do not specifically authorize your family members, even if they are
in agreement, to make health care decisions for you.
An update of
Pennsylvania
's inadequate laws regarding advance directives and end-of-life
decisions is now being considered by the Legislature, but the proposed
revision ignores the issue of how decisions should be made for the 80% of
adults without an advance directive.
(For a copy of the current legislative proposal, see the reference
to Senate Bill 492, below).
If you don't want to be a Terri
Schiavo, get an advance directive now.
In that document, you want to designate: (1) which person you want
to make health care decisions for you when you can't make them; (2) the
kind of medical treatment you want or don't want to receive, especially at
the end of your life; (3) your desires in regard to comfort and freedom
from pain if freedom from pain might potentially detract from your
consciousness or hasten the moment of your death; and (4) any other
important instructions regarding your care and treatment.
Here are some web resources on the
issues addressed in this article:
A good source of information which
presents both sides of the Schiavo case is the Tampa Tribune's special
report, available online at: http://reports.tbo.com/reports/schiavo/.
Pennsylvania
's complicated 49 pages of proposed legislation on advance directives is
available online at: http://www2.legis.state.pa.us/WU01/LI/BI/BT/2003/0/SB0492P0529.pdf.
Additional information on advance
directives is also available on the Marshall, Parker & Associates' website, www.paelderlaw.com.
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