There are signs of both great longing and great promise ahead. This is America's other budding crisis in health care. While research for cures of life-threatening diseases barrels ahead, more and more Americans are also looking for better ways to die. As the end draws near, Americans are saying, give us the time, information and guidance to move to the final reprieve of palliative and hospice care. Allow us in our last days to live smart, to embrace the life we have left and to make our deaths our own.
Story about Barbara
When 53-year-old Barbara Wein was diagnosed with ovarian cancer three years ago, she faced what has become the end-of-life
dilemma for most critically ill Americans.
CONVERSATIONS
There is no way around the reality of death and dying. But
Americans are learning that end-of-life conversations can be a pathway leading them to a better way of dying. The end of life,
say experts, need not be all angst and agony, but a time of surprising personal growth.
Story about Janet
She was 46, a wife
and a mother. But with that doctor's office visit, the university professor became one more member of an aging nation
forced to wrestle in words with her own mortality.
WIDOWHOOD
The Social
Security Administration projects that by 2010, nearly 1,050,000 Americans will lose spouses each year, and by 2030 that
number is expected to grow to more than 1.5 million. Those left behind face redefining their lives to deal in new ways
with family and friends, as well as unresolved feelings and regrets left over from marriage. As many widowed Americans are
finding, building a new life or finding new meaning sometimes requires just taking another approach to your "old" life.
Stories about Widowhood
Read about the stories of Bonnie, Shellie, Teresa and Michael, and follow their journeys through the loss of a partner to a
new identity
PALLIATIVE CARE
Although palliative care is well established in many other countries, most of the
American public and many professionals still know little about it. Good palliative care not only relieves pain and
other symptoms and offers practical assistance for patients and caregivers in the home, it encourages discussion about
values and decisions in planning for medical care, and respects these decisions after they are made. And, at the end of
life, it offers opportunities for closure - even growth - and helps the bereaved deal with loss.
Story about Madeleine and
John
Like most Americans, Madeleine Corbett and her husband, John Meneghello, had no idea what the
term palliative care meant. And like most Americans, they found out only when critical illness struck.
ADVANCE DIRECTIVES
Advance directives spell out wishes for health care should a patient become
too ill to speak up. Doctors agree that directives can make things clear, even in a complicated and emotional time.
Without them, family members are left guessing about critical medical decisions - and when they disagree, physicians
typically continue life support, often extending suffering for all involved.
Story about Margaret
In 1998, Margaret Lazarz sat down with trusted relatives to orchestrate a critical juncture in her life - her
final medical care.
CULTURE AND DIVERSITY
America faces challenges in the coming years, as millions of baby boomers
and their parents reach the dying stage of life. Getting Americans to face dying head-on and rethink the way they
view life's end will be tough enough. But if society hopes to improve the way all Americans die, with dignity and quality
care, it must first cross the cultural taboos and boundaries that appear to sit like trap lines around Asians and
Hispanics, Native-Americans, gays and lesbians and African Americans.
Story about Eva
Far from the ravings of a mad woman, her refusal to accept her cancer and impending death were symptoms of a
profound mistrust. Denial of a cancer diagnosis was part of Eva's struggle to get care she felt she'd been denied most of her
life.
SPIRITUALITY AND FAITH
We are coming to realize that spirituality is of the utmost importance
at the end of life. It may be found in the connections, relationships and meanings that give life passion, commitment
and hope. Spirituality is that which ultimately concerns people when they are dying and life is put in perspective. It is
at the core of all religions, and, in one form or another, it's the comfort most people turn to when they realize they are
about to enter an unknown place.
Story
about Spirituality
Read about the stories of Gina, Kathy and Rose follow their search for spiritual
connections in the face of advanced illness.
LAST RITES
Every culture known to humankind has devised rituals and ceremonies to deal with the
troubling facts of mortality - that grief is the tax paid on attachments, love hurts, a death in the family, like a birth,
must be observed. Funerals define and affirm the changed status of the dead and the living survivors. The deceased and
the bereaved are brought - by these last rites of passage - to the brink of whatever new reality the society assigns:
heaven, oblivion, bereavement or release.
Story about Michael and his father
All that Michael's father would ever say, whenever he had anything at all to say about it, was, "When I'm
dead, just cremate me."
CAREGIVING
There is no job description for caregivers, but the 25,000,000 million Americans who
provide care for elderly or critically ill family members do anything from shopping for groceries and medicines to bathing,
dressing, feeding, cleaning house, and taking care of the family finances. Often they do it all. Despite the huge stress,
many take on caregiving voluntarily and speak easily about its rewards. They talk about the blessings of giving or the
growing self-confidence that comes with mastering one difficult task after another. Still others feel the peace of
mind that comes from meeting the needs of someone they love.
Story about Beth
A one-time manager at a major national insurance company, she embraced the role of full-time wife and mother in 1993. The day
her mother and father-in-law both ended up in different emergency departments, she realized her career would stay on the
shelf a bit longer.
Story about Shirley
Shirley Loflin, 66, knows what it means to go it alone. When her 83-year-old mother died in 1993 after a long illness,
Loflin was left to care for both her ailing father and her husband, Geddie who suffered a debilitating stroke.
HOSPICE
Considered a radical alternative in the 1970s when the first American hospices were
established, hospice has become the most recognized care offered specifically at the end of life. Yet, it remains widely
misunderstood and under-used. Its goal is to help keep patients as pain-free - and lucid - as possible, with loved ones
nearby, until death arrives. The work of hospice allows many Americans to die at home, in their own bed, surrounded
by family and friends.
Story about Christie and Pat
For the next month, which was to be the last of Christie's life, Pat learned how to care for his wife of 15
years in their home, with the help of the hospice team.
NURSING HOMES AND LONG-TERM CARE
Increasingly, aging and dying Americans end up in nursing homes
and their families are faced with overwhelming financial and medical decisions. Currently, 24 percent of Americans
over the age of 85 live in a nursing home. They face a series of challenges: Choosing the right home, finding ways
to make life meaningful in their new surroundings and, ultimately, making decisions about how they will die.
Story about Cynthia
"Putting my mother in a nursing home was the hardest decision I ever made. Ever," said Cynthia Cooper, recalling the
day just over 3 years ago when she knew her mother could never return home.
WHEN A CHILD IS DYING
Team members caring for dying children frequently recognize the depth of
their patients' perception and awareness. Children often know when they are dying, even though others are reluctant
to admit it. The death of a child and how they meet that end, however, can offer lessons about life and how to survive the
unthinkable.
Story about Georgiana
Jennifer Phelan knows it's possible to survive the unthinkable. She knows because her 7-year-old daughter Georgiana
showed her how.
VIOLENCE AND UNEXPECTED DEATH
In America's ultra-violent society, too many survivors are left
with sudden and overwhelming holes in their lives. Unexpected deaths administer a powerful shock - like a cosmic slap in
the face - to those left behind, allowing very little time for survivors to take in, much less deal with, the magnitude
of their loss. At worst, the loss comes to dominate survivors' lives by draining them of meaning and joy. At best, they
not only cope but also reach out in a way that changes their lives and those of others around them.
Story about Cheryl and Joe -
The call to their Albany, N.Y., home was from was a family member who rushed to tell them
- before they might hear it on the evening television news - that their two grandchildren were dead in a small town some
30 miles away.
Story about John and Suzanne -
The Villaggios' lives changed with a phone call from an
administrator at a hospital in Fargo, N.D., who spoke the words every parent dreads: "Your son has been in an accident.
He is in surgery right now. You had better get here as soon as possible."
LIVING WITH LOSS
The land of grief, with its sorrowful valleys and mountains that seem too high
to climb, is a destination all humans eventually find. Its hallmarks are a sense of shock and numbness, a feeling
of being alone, and a desolation that searches for meaning. The American emphasis on the quick fix creates impatience
with grieving and a low tolerance for this slow journey through sorrow. In the land of grief, however, mourning does
not have a timetable. The only thing it requires of us is that we learn to absorb the loss, remember our loved ones
and learn to live well with, and in spite of, our losses.
Story about Daryl
"I never really knew what forever meant until my dad died," said Daryl Kipke of Tempe, AZ., whose father died of prostate
cancer at 65. "I can't believe that I'll never see him again."
Story about Marcia
The author eloquently shares her personal journey through the grief that followed the death of her daughter, Ellen, in
an automobile accident at 17.
A VISION FOR THE FUTURE
After pushing for everything from natural childbirth in the 1960s to
longer, healthier lives in the decades since, 76 million baby boomers soon will be demanding information, guidance and
relief in what will be their ultimate transition - moving from advanced illness into dying. A generation that grew up
listening to the Rolling Stones and Led Zeppelin will expect innovative products to help relieve severe pain at the end
of life. And in a cultural sea change, Americans as a nation will revisit the way they think about death.
Story about Laura
The passion to help others started smoldering inside Laura Letson a long time ago. So a few years ago, when her dad's
heart first began to fail and his health steadily worsened, that passion quickly became fully engulfed. She would do whatever
it took to ease her dying hero into a good and graceful farewell.