Ambitious PBS series looks at improving the
way we die
By JUDY GROSS
Woody Allen may have said it best. Im not afraid of
dying, I just dont want to be there when it happens. That might be
a widespread feeling, but most people remain fascinated by death.
It may be an element of life as old as the race, but our
imaginations are never sated. Despite an immense body of literature on the
subject, our interest remains great enough to support a constant stream of new
books.
An ambitious new public television series by Bill Moyers is
scheduled to air Sept. 10-13, 9-10:30 EDT each night. Titled On Our Own
Terms, the series looks at all aspects of death. Context for the series:
Organizations to deal with death and coalitions to discuss it are springing up
all over the land.
Death isnt something that just happens anymore. People now
have choices, some of them stretching the limits of ethical consideration.
Wound through all the questions is the thick thread of religious tradition and
practice, often comforting not only in the traditional sense but also in
helping to make sense of new possibilities surrounding death.
The public discussion hasnt yet reached what author Malcolm
Gladwell calls the tipping point, where ideas and messages spread
like viruses, but even prime-time television is looking at dying in a new way.
Death, or euphemistically end of life, has entered the spotlight as
baby boomers enter senior citizen status.
With aging boomers expecting to live as much as 30 years longer
than their grandparents, end of life angst has attained dinner table
respectability. The other side of the issue is the role boomers are playing as
caregivers to aging parents, who are often reluctant to talk about death.
Fr. Charles Meyer, an Episcopalian priest who is chaplain at St.
Davids Medical Center in Austin, Texas, said the World War II generation
had more social structures and didnt need to talk about a lot of
stuff. He said that one way to start the discussion with older people is
by talking about ones own wishes at the end of life and then saying,
What about you?
Stepping out ahead of the crowd was Jim Towey, a boomer who was
legal counsel for Mother Teresa. After working with her in caring for the dying
in India, Towey put together Aging with Dignity, a nonprofit organization whose
emphasis is on improving care for those at end of life.
Toweys concern is for the uncertain future. The minute
the economy starts to sputter whos going to get squeezed? The poor and
the elderly. They always do. He wanted to start the discussion well in
advance.
Part of Toweys motivation is his concern with societys
drift toward euthanasia. I saw how much easier it would be to kill them
than to care for them, he said, referring to his experience in India. In
his opinion, Third World countries care for their dying more humanely than
developed ones.
Here, people in pain are isolated and treated like
objects, Towey said.
A February Aging Today article states that two-thirds of
the 2,805 Connecticut physicians surveyed confirmed that if physician assisted
suicide were legalized, they would aid in a patients death. Not
unexpectedly, the study also showed that a physicians religion affects
views on assisted suicide. Followers of Judaism, Catholicism, Lutheranism and
Islam strongly condemn it.
One initiative of Aging with Dignity is Five Wishes, a menu of end
of life choices that goes into detail about what an individual wants to happen
at the moment of death and after. Moving a step beyond living wills, health
care surrogate and do-not-resuscitate documents -- all efforts in helping
medicine to know when to stop -- Five Wishes asks the person to determine
things like If anyone asks how I want to be remembered, please say the
following about me.
Experts in end of life care and the American Bar Association
Commission of Legal Problems of the Elderly helped to write Five Wishes, which
is accepted in 33 states. Another of the organizations programs is
educating the health care community.
Toweys idea isnt all that new. Ethical wills, in which
people attempt to pass on their values to future generations, have been around
since the 12th century. Ethical wills of antiquity, much like modern ones,
contained burial instructions, blessings and discussions of personal and
spiritual values. The first scriptural ethical will was recorded in Genesis
27:27, when Isaac mistakenly gives his blessing to son Jacob instead of Esau,
the first-born.
Minnesota physician and home hospice director Barry Baines says a
recent resurgence of interest in the practice reflects the desire of baby
boomers, who may have done well materially, to also pass on values and
life lessons while alive. Ethical wills, he writes, reflect the
voice of the heart, and are a love letter to your family.
An expert on aging
Moyers, 59, said jokingly that he has acquired the credentials he
needs for the upcoming Public Broadcasting Service miniseries.
The very experience of time has made me an expert on
aging, he said. On a more serious note, Moyers points out that in the
last 4,500 years of human existence 27 years were added to life expectancy, but
an additional 30 years were added in just the last century. Americans
dont like the limits that come with aging, he said.
He compares the emergence of end of life issues to the
womans movement that revolutionized maternal health care. We
learned to make arrival better; now we have to make dying better, he
said. He noted Americans see movies where zillions are gunned down,
but are uncomfortable with individual deaths. He said the change came when
people stopped dying at home where the family had a part in the caring.
Then we hired death out.
Nancy W. Dickey, past president of the American Medical
Association, agrees with Moyers. Addressing 300 health care professionals at an
end of life conference, she said the key is recognizing death isnt
the enemy. She said America became a death denying society in
the 1970s, when we devalued age and began to pursue eternal youth.
Meyer said, The last place you want to be is in a hospital
when you die! As technology, medicine and treatment techniques increased
during the last half of the last century, society began to believe they were
required in every circumstance. The author of A Good Death: Challenges,
Choices and Care Options says the ethical question to ask before heroic
measures are instituted on a dying person is, Are we restoring the
patient to an acceptable quality of life?
If not, get out of the way and allow a natural death to
happen.
Meyer said one problem is that health care staffs are uneducated
about how people should die. As an example, he points out the spectacle of sick
old people being rushed to emergency rooms just so they wont die in
nursing homes. He is a strong advocate of AND (Allow Natural Death) orders and
says they should replace the legalistic DNR (Do Not Resuscitate) orders.
Physician and writer Ira Byock notes, Dying is almost always
hard, but it need not be horrible. Palliative care -- efforts to keep
patients as comfortable as possible while avoiding extraordinary measures to
keep them alive -- strives to give opportunities for the individual and family
to grow at this poignant and often precious time of life.
Focused on end of life care
Beyond the well-known and widely available hospice program -- a
palliative care movement that began in the 1970s to tend to the dying in their
homes -- new programs and organizations are rapidly emerging. Many focus on
making physicians more comfortable with the dying patient and dispelling death
as a medical failure. Out of 126 U.S. medical schools in 1998, only four
required a course on death and dying
The Robert Wood Johnson Foundation has funded 23 community/state
partnerships to involve citizens/patients in institutional and policy change
for high quality end of life care. One of them, Last Acts, engages
health professionals, religious leaders and the public to develop a common
agenda on the topic. Teaching caregivers to be advocates for themselves and
their aging parents is primary.
Another new organization, Americans for Integrity in Palliative
Care, advocates for better health care for the dying and opposes euthanasia.
Still another, Partnership for Caring, is developing a grass roots campaign to
demand legislative initiatives for the dying, on a state and federal level.
Christina M. Puchalski, a physician, writes, Spirituality is
often the way dying people give meaning to their suffering. Aging with
Dignitys Jim Towey echoes the thought: The moment of death is holy,
not a medical event.
Even though they know better, people still think theyre
going to live forever. Towey just wants them to be better prepared for that
inevitable moment described by author Agatha Christie: I live now on
borrowed time, waiting in the anteroom for the summons that will inevitably
come.
The
basic points of Five Wishes are: |
- The person I want to make care decisions for me when I
cant.
- The kind of medical treatment I want or dont
want.
- How comfortable I want to be.
- How I want people to treat me.
- What I want my loved ones to know.
Copies of Five Wishes may be purchased by contacting Aging
with Dignity, P.O. Box 1661, Tallahassee FL 32302. Web site:
www.agingwithdignity.org |
National Catholic Reporter, August 25,
2000
|