A good death remains elusive
Part One
By MARY POWERS
Scripps Howard News Service
Defying the odds by living for more than five years with heart failure and colon cancer, Virginia Ivy now is ready to die.
A living will outlining her treatment wishes greets hospital staff when they open her medical chart. She has asked her eldest son to act in her behalf if someday she's unable to speak for herself.
In June, Ivy, a 71-year-old Memphis widow, mother, grandmother and retired nurse, stopped chemotherapy. When her heart stops, she doesn't want anyone to restart it.
"I'm ready to meet my maker," she says.
For Ivy and other Americans the quest for a good life now includes "a good death." For most that means death on one's own terms -- in a hospital or at home, without pain or chaos, with or without feeding tubes, ventilators and other tools of modern medicine.
It sounds simple, but it is not yet a right that's easy to claim.
Despite nearly 30 years of legal, ethical and legislative effort, "good" deaths remain elusive. Death in America often still means miscommunication, missed opportunities, unwanted or unneeded medical intervention and pain.
Many of us are left to fear dying more than death.
Today there's a diverse and mounting national effort to understand why American medicine sometimes goes so terribly wrong at life's end. It's a grass-roots movement fueled partly by alarm over efforts to help people end their suffering by killing themselves.
"I cannot imagine we will continue to do this badly. Gradually families aren't going to take this," says Dr. Joanne Lynn, director of The Center to Improve the Care of the Dying at George Washington University in Washington, D.C.
On good days, Ivy makes her own breakfast, talks to friends by phone and reads her Bible. On bad days, faith sustains her.
"It's my decision (to stop chemotherapy). Now I just want everyday care until death do us part," she says. "I just asked the Lord to take care of me from day to day."
These days, Martin Greenberg still has angry memories of his father's death. Edward Greenberg was 82 when he died March 28 following a 10-year battle with Alzheimer's disease.
"In my mind, my Dad would have kicked my butt for letting him be a vegetable for so long. He was a proud man," says Greenberg of Germantown, Tenn.
"In my mind, (assisted-suicide advocate Dr. Jack) Kevorkian is a hero. He is putting people to peace. He is also allowing families to go to a grave and have closure."
A retired production manager for a New York laundry, Edward Greenberg died in a Cordova, Tenn., nursing home, no longer able to recognize his family and needing help with life's most basic functions.
"The doctors were always in a hurry to put Dad back in the hospital," his son recalls. "Why? To cure him?"
In his living will, Edward Greenberg said he didn't want any heroic measures taken to extend his life.
For Dotty, his wife of 57 years, that meant saying yes to an intravenous line to deliver supplemental food and fluid, yes to supplemental oxygen and antibiotics to treat his pneumonia and no to machines to help him breathe.
MAPPING THE FUTURE
Now that Baby Boomers are flirting with retirement and senior citizen status, the quality-of-death issue also has burgeoning economic implications.
The government already has a huge financial stake in Americans' final days. More than 70 percent of the 2.3 million Americans who died last year were covered by Medicare or Medicaid.
Studies indicate the government spends some $100 billion a year for health care of people who die within 12 months, with the bulk of spending concentrated in the last two months.
Some openly wonder whether hospitals and nursing homes are delivering maximum allowable rehabilitation and medical services despite a terminal patient's wishes, just to collect the last possible reimbursement.
While medical billing offices certainly seek to get doctors and hospitals reimbursed at the most generous rates for any given patient, there's little evidence that many providers routinely order care that's not medically justified.
But is all that treatment wanted?
At least 50 initiatives are under way to improve end-of-life care. Marilyn Webb, author of "The Good Death -- The New American Search to Reshape the End of Life," envisions a movement in which people reclaim death much as the natural childbirth movement helped women reclaim birth.
In 1991, federal lawmakers crafted a measure to get things rolling.
Hospitals, nursing homes and other institutions were required to tell Medicare and Medicaid patients about the option of preparing legal documents to guide medical care if one day they're unable to speak for themselves. Patients can designate someone to act in their behalf, detail what treatments are acceptable when, and outline when death would be welcome.
Despite the legal opportunity to map their own roads to death, few do so. A 1997 study found fewer than one in five nursing home residents taking advantage of the opportunity.
Butch Valentine, 44, knows what can happen without guidance. Experience helping care for a young man battling AIDS taught him that.
"He was unconscious, in diapers, and we were grinding up his medicine and putting it into him with a tube. There was no one to tell us to stop," recalls Valentine, a Memphis fund-raiser.
Modern medicine makes living wills indispensable, says Rev. Tom Rodgers, pastor of a nondenominational church in Wichita Falls, Texas.
"I've seen families struggle. This side of the family wants this, the other wants that. (Living) wills prevent a lot of the needless disagreement, hurt and pain at a time when no more is needed," says Rodgers, who chairs the United Regional Health Care System's ethics advisory committee.
When Ivy signed her will on Oct. 15, 1997, she says it brought "a tremendous sense of relief."
If her physician determines recovery is unlikely or death is imminent within six months or she has been in a coma for at least 60 days, then medical care serving only to prolong dying is to be withdrawn. She also knows those plans aren't final. She can change her mind and revamp the instructions.
So, why don't more people follow Ivy's example?
Blame patients who don't want to contemplate their own demise. Add doctors who are pressed for time and sometimes as reluctant as patients to introduce the subject. Take note of hospitals, nursing homes and other institutions at which advance directives are sometimes just another question to be asked on the admission checklist.
"It's not something you want to keep hammering away at with people. It's hard to confront one's mortality," said Dr. Stephen Miller, the Memphis internist who is coordinating Ivy's care and whose questions prompted her living will.
Complicating human reticence to plan for the end is the fact that states sometimes limit the legal power of patients with a terminal illness, filtering out those battling progressive dementia or other chronic problems. Rules vary from state to state.
Even when completed, experts say, advance directives are often either too vague or too specific.
"If I listed 145 treatments I did not want, then sure enough, it would be the 146th thing I didn't cover that I ended up having to deal with," said Dr. Joan Gibson, director of the University of New Mexico Health Sciences Ethics Program.
Rapidly changing technology and treatments, combined with life's uncertainties, make it impossible to address every possibility.
But documents limited to directions like "no machines" or "no heroic measures" aren't helpful either.
"My mother always says, 'Never put me on a respirator,' " said Rev. Gail Joralemon, chairman of the New Mexico Coalition for Advance Directives.
"And I say, 'No, Mom, what you mean is you don't want to live your life on a respirator.' "
THE OBSTACLES
What's needed, advocates argue, are honest discussions about the medical dilemmas a particular person will likely face.
Ideally a patient will also talk to family, physicians and friends about broader questions of individual beliefs, values and preferences. The goal is planning that is better informed and more meaningful.
Everyone involved must become more familiar and more comfortable with the process. Any advance directives must be included in the patient's medical chart kept in the hospital, nursing home and each doctor's office.
Gloria McDaniel, 73, thought she and her husband, Preston, had their affairs in order.
Each had signed a durable power of attorney for health care. Their living wills were distributed. And, nine years after Preston McDaniel's Alzheimer's disease was diagnosed, a do-not-resuscitate order was completed.
In February, Preston, an 82-year-old former Navy pilot and retired financial planner, had a fever-related seizure while attending a Memphis Alzheimer's day treatment program. An ambulance zipped him to the hospital. All the advance directive documents were left behind.
"It made me realize you almost have to carry one in your pocket," Gloria McDaniel said.
Even when the right documents are available, will doctors heed them?
From 1991 through 1993, New York researchers reviewed hospital care of 114 elderly patients. All had advance directives, but only 26 percent of the documents were consulted or recognized during the hospital stay.
Other studies note evidence that physicians either were unaware of or disregarded patient requests concerning cardiopulmonary resuscitation. Five studies completed from 1992 through 1994 found that doctors incorporated only 5 to 25 percent of advance directives into treatment decisions for terminally ill patients.
Yet without advance directives, physicians sometimes mistakenly believe they have no choice but to attempt resuscitation of frail, even terminally ill patients. In some institutions, the response is dubbed a "slow code." CPR is begun, but without real urgency or an expectation that it will succeed.
There has been progress.
Gone are the days when doctors and families routinely withheld the diagnosis of terminal illness. Physicians say they are more willing to discontinue futile resuscitation efforts or bow to a patient's choice to forgo treatment. Courts now recognize a person's right to refuse treatment and to prepare instructions to help guide care.
For patients lacking formal advance directives, courts are sometimes willing to let families halt treatment. A Michigan jury even awarded $16.6 million in damages to the family of a woman whose treatment requests were ignored.
Several states now operate public guardian programs. The programs feature people who work with health professionals to provide independent oversight for patients unable to make treatment decisions.
Doctors and families torn between treatment options can turn to hospital ethics committees. Death and dying are also gaining increased attention from medical educators.
But interviews with health professionals, patients, families and experts in the field suggest that such efforts still often fall short - foiled by time pressures, social taboos, confusion and medical technology that's helped extend life.
Powell 'Preacher' Forbes signed a living will long before he fell ill.
The Baptist preacher from Paoli, Ind., made it clear to his adult children that when the time arrived they should let God call him home. He didn't want extraordinary measures.
He thought he made that message clear again when he entered a nursing home.
Then his kidneys shut down. He was rushed to a hospital where he was prepared for dialysis. A feeding tube was inserted through his nose.
Three times Forbes, 83, pulled it out. The hospital staff threatened to have it surgically implanted.
Medical research suggests the family's experience isn't unique.
A 1995 study of 4,804 dying patients reported that half suffered moderate to severe pain during their last three days of life. Nearly 60 percent of patients had never discussed their prognosis with their physician or their wishes regarding resuscitation.
When patients indicated they didn't want CPR, about half the time doctors failed to make the necessary medical chart notation. For nearly half of the patients, their final hospital stay included at least eight days spent comatose, in the intensive care unit or attached to a ventilator.
A 1997 Institute of Medicine task force concluded that inadequate care means that death in America is often marked by needless suffering and distress.
Two years earlier, the Catholic Hospital Association's Supportive Care of the Dying Coalition characterized care of the dying as grossly inadequate and in conflict with its Christian mission. The coalition's focus groups revealed doctors downplaying symptoms, health professionals reluctant to discuss patient questions and fears about the dying process.
This fall the AMA will launch a massive educational effort targeting doctors and end-of-life care. Organizers want to reach every practicing physician in the country in the next two years.
Dr. Ira Byock, head of The Palliative Care Service in Missoula, Mont., and past president of the American Academy of Palliative and Hospice Care, says the public must start holding doctors, medical institutions and insurance companies more accountable for end-of-life care.
Today Dan Forbes still isn't sure why the hospital staff insisted on a feeding tube despite his father's wishes. Maybe doctors worried that his father didn't fully understand what it meant to withhold life-prolonging treatment, the younger Forbes says.
The result was Dan Forbes arriving at the hospital in 1983 to be greeted by his father's plea. "He said: 'Danny, please don't let them do it (insert a feeding tube).' It was the first time I had ever seen my father cry."
The son honored his father's wishes. "I didn't want to do it. I wanted to keep my father around. I didn't want him to die.
"I now know he's in a place he worked all his life to get to. I know I did the right thing."
Mary Powers writes for The Commercial Appeal in Memphis, Tenn.
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Tomorrow: The process of dying is often most painful for those who deny death as it approaches. Physcians and the clergy have issues to face, too.