Seeing that your dying wishes are respected

By LEE BOWMAN
Scripps Howard News Service

After decades in the shadows of medicine, the delicate art of dying on one's own terms slowly is gaining the attention of the nation's medical community.

In hundreds of towns, dozens of national organizations are working to bring the promise of "a good death" within reach of all Americans.

Eventually, it is hoped, these efforts will make the American health care system as sensitive to the miracle of leaving life as it has become to the miracle of birth.

In the interim, experts and survivors say patients and their families still need to demand rather than expect good care at the end of life.

Over the course of more than four months of inquiry, a team of 23 Scripps Howard reporters found numerous examples of how ordinary people can best fight for their last rights.

Build a team

Norm Haag of Sharonville, Ohio, and his first wife, Harriet, had a living will they thought would keep them from dying tethered to machines, but when it was put to the test in 1992, things didn't go according to plan.

After rushing his wife to a hospital emergency room with what turned out to be a blood clot in her heart, Haag repeatedly had to restrain intensive care unit doctors and technicians who wanted to connect her to a dialysis machine and a respirator.

Without a living will, "we would have been in trouble. They would have put her on a respirator," recalls Haag.

But even so, "The document is nothing unless the doctor knows, the surgeon knows, the nurse knows and there is someone there to say something."

Have the talk

When the weighty responsibility for end-of-life decisions falls to a designated person, that advocate must know, in some detail, what the dying person's wishes are.

"You would be amazed at the number of people who appoint a proxy and don't bother to tell that person," said Karen Kaplan, executive director of Choice in Dying Inc., an advocacy group that pioneered the first living wills 30 years ago.

"We get calls from people saying, `My mother is in the hospital in a coma and I'm the proxy, but I don't have any information. What do I do?' "

David Kessler, a former nurse, Los Angeles hospice founder and author of The Rights of the Dying, points toward a first step:

"One of the most important things is opening that communication, starting that conversation, even if it's awkward. The first step is to have that talk with the family and let all the disagreements and arguments occur while you're still healthy and can participate."

It's not enough to say that you don't want everything done to keep you going, says Joan Teno, a Brown University geriatrics specialist and co-author of a landmark study underscoring how seldom advance directives or living wills are honored. "You have to give some advice about what you value and when decisions should be made."

Experts refer to broaching the subject of death and dying with loved ones as "the talk" or "the conversation." It can be as full of anxiety as discussing sex with a teenager.

"You have situations where the 90-year-old grandma wants to discuss these issues and she tries, and the children tell her, `No mom, you're fine. We don't need to talk about that yet.' And it's shut down," said Sally Nunn, a bioethicist at the University of Pennsylvania Medical Center in Philadelphia.

Myriad groups offer a number of tools and checklists to help guide and prompt conversations.

Joan Gibson's "values history form" is one such tool. Gibson, director of the Health Sciences Ethics Program at the University of New Mexico in Albuquerque, says, "It's important to develop a profile of what matters to you, your hopes and your fears."

The form probes how people feel about religion, self-sufficiency and health problems as well as fears, finances and more. It's intended to be filled out before writing a living will, to provide a context in which health care decisions can be made.

Do the paperwork

Opinions vary over the value of advance directives or living wills and how specific they must be.

While it's important to know how laws on living wills and designated health care decision-makers work in your state - and other states you frequent - advocates such as West Palm Beach, Fla., health law expert Philip Sprinkle say the form of the living will is important, but not critical.

"What's more important is that there be a consensus among the family. There are tons of situations day in, day out, where there's no living will and it's just a matter of getting the spouse and the children together and comparing notes."

Other counselors insist that a written document helps avoid conflict in a grieving family. Most advocates urge people to give at least one copy to their regular doctor and to their health care surrogate and to a backup person.

If some aspect of treatment particularly worries you, it should be specifically discussed in an advance directive. But using too much medical jargon or trying to foresee all contingencies is probably futile.

Mary Jo Iozzio, professor of theology at Barry University in Miami, says she can't predict all the possible things that could happen to her and has kept her advance directive simple: "Upon discovery, if there is an accident and I am diagnosed as being in an irremediable condition, don't kill me. But you can let me die."

People need to be aware that there are specific legal tools at their disposal.

In particular, "do not resuscitate (DNR)" orders that apply in the hospital or a nursing home may not work at home or on a street corner. In some states, special color-coded DNR orders are needed to be recognized by paramedics. Others use special bracelets. Some have gone so far as to have a prohibition against CPR tattooed on their chests or stomachs.

It's also important to make sure that surrogate decision-makers and key medical providers are ethically prepared to carry out requests.

A look through the eyes of Mary Ann Hudecki, a nurse in the ICU at Martin Memorial Hospital in Stuart, Fla., illuminates that point.

"My older sister put me as her surrogate because `you'll be able to pull the plug. My children won't.' "

Consider the options

Even with planning, designated decision-makers and a supportive, informed family, few patients are ready for the choices that follow a terminal diagnosis.

By most accounts, hospice programs are the most likely to give dying patients and their families the opportunity to live as fully as possible.

"Hospice is just a dignified way of dying," said David Gaston of Buffalo Gap, Texas, whose wife, Stephanie, 48, died of cancer last fall at Hendrick Hospice Care in Abilene.

Even within hospice care, practices can vary widely. Some may routinely feed with tubes, others may not; some may pay for treatments that extend life, like chemotherapy, even though they might be seen as attempts to cure. Every patient is entitled to a thorough discussion of such issues and a written, proposed plan of care before signing on.

"The key is, you're only dead at the very end," said Thomas Hoyer, the Medicare official who oversees the hospice program. "It's really all about life services, about managing a scarce resource - the time you've got left."

Hospices pioneered palliative care, which many interpret as controlling pain with drugs. But palliative care really represents a more comprehensive plan to manage a range of discomforts that arise as the body shuts down, as well as address the spiritual, emotional and mental aspects of dying.

Dying people, their friends and family need to study pain and learn about measuring it and reporting it, based on 1-10 scales or some other yardstick so that caregivers can attack it aggressively.

In the last hours, pain medicines can be a double-edged sword, bringing comfort but also slowing down breathing and other functions.

"We've all been taught from day one, if you give them too much, you'll kill them," said Dr. Richard Rose, a Knoxville physician.

"But if you explain to family you can ease pain but it might shorten life by a few hours or a day or so, they usually agree. If they die sooner, rather than living in agony, then I can live with that."

Understand hospice

For practical and personal reasons, hospice doesn't work for everyone.

Only about 15 percent of the more than 2 million Americans who die each year are in hospice.

And while hospice officials say they don't rule out hope, people who enroll give up the option of therapy intended to cure them - something many refuse to do.

Hospice normally means dying at home, which is comforting to some, but not everyone. Some want to go down fighting, surrounded by all the medical technology they can summon.

Dying at home requires caregivers who are emotionally and physically able to help, or being able to afford professional help, or cobbling together volunteers.

Caregiving also takes a mental and physical toll, with 15 percent of those responsible for someone over 50 in their home reporting health problems of their own.

Only a limited Medicare benefit for skilled nursing care, or poverty status allowing Medicaid coverage, guarantees a dying person full-time care, unless he or she is in a hospital.

Hospitals remain the place most of us die, and will for some time. That often requires more vigilance on the part of patients and families.

"The first thing I tell friends is take nothing for granted," said Dr. Ira Byock, a hospice physician in Missoula, Mont., and past president of the Academy of Hospice and Palliative Medicine.

"Even if you're in a world-famous institution, in the care of a renowned doctor, be watchful."

Resources for the dying can be found in hospitals, but often doctors still focus on cures and nurses concentrate on the care of the moment. Families may need to seek out chaplains, counselors, social workers or discharge coordinators to ensure all needs are met.

Still, many hospitals are trying to be responsive. Dr. Amos Bailey says that's the case at Birmingham's Cooper Green Hospital, where he heads the Balm of Gilead Center, a new hospice within the hospital for poor patients.

"Our goal is to try to infuse the control of suffering into our whole medical practice."

Remember why

The whole point of comfort care is to let people who are dying do a little living, allow them and their families, or surrogate families, a chance to laugh and cry and remember.

After losing his first wife, Harriet, in a tense ICU conflict, Norm Haag of Sharonville, Ohio, last year learned his bride of four years, Betty, was fatally ill with kidney cancer.

This time, things were different.

After a long talk, Betty Haag, 63, opted against a round of chemotherapy that might have extended her days but reduced their quality. She entered hospice.

The Haags took a long-anticipated trip to Florida to visit a friend Betty Haag hadn't seen in 15 years. She talked closely with her children and once took a 10-year-old granddaughter to a cemetery to talk about death. She sorted through old photographs and went through her jewelry, finding enough pearl necklaces to give one to each child.

"A friend told me once that she would want to go suddenly, just drop dead," Betty Haag said a few weeks before she died on June 6.

"I told her, `you would miss so much.' I know it sounds weird, but this has been a good experience for me."

While the models for "good deaths" are often those that bring peace and closure surrounded by families, no one size fits all.

"Being alone is more frightening than the actual death," said 60-year-old Louisiana prison inmate George Fine, who is dying in the hospice unit of the state penitentiary in Angola. His closest blood relative is more than two hours away, but inmate volunteers and friends he made inside are allowed to visit as surrogates.

"There's a lot of care and love in this program and that's not something I'm accustomed to in the institution," he said.

Some people set goals - to complete a project or live to a birthday or a birth or a wedding. Many care teams tell stories about patients who rallied to reach such milestones.

But sometimes closure doesn't follow a script.

Dr. Bruce Bartlow, a critical care specialist in Redding, Calif., tells the story of a woman whose kidneys barely functioned as she was kept alive on dialysis. Her one wish was to reunite her two sons, who had not spoken to each other for 20 years. Told of the wish, they still refused to meet.

With that, Bartlow said she decided to end her dialysis and died quietly. "She finally decided to let it go. I think we saved her a lot of pain."

Others may focus so much on those they're leaving behind that they neglect to grieve for themselves.

"Death is very, very hard, and the family is going around saying `we're losing this person.' But the truth is, they are losing only that person," said Sister Brigid Mollaghan, chaplain at Shannon Medical Center in San Angelo, Texas.

"The patient is trying to sort everything out for himself, and that person is losing every person, every possession, everything they ever wanted, all the dreams of everything they ever wanted to do."

One of the most common concerns of the dying is that they're a burden on their families.

"End-of-life tasks require a whole new set of skills," said David Callan, a clinical social worker in Cincinnati. "One skill is just learning to become dependent again . . . having to give up your car keys, or having to have someone give you a bath. People look at that as degrading."

Many caregivers say those very acts of final caring are important gifts for them as much as for the dying.

"I saw people do things for Dan I never thought they would be willing to do," Mary Lahti said of the circle of friends who rallied around her husband in the Cincinnati nursing home where he died from a brain disease last year.

"I thought some would say `this is getting beyond me now,' but they got very attached to him."

In the last 10 days, she and her family kept constant vigil.

"Death is not pretty, the suctioning and coughing and all that," Lahti said. "I gave up on the idea that we'd all be standing around the bed with candles lit, but I really wanted to be there with him, and I was."

Just before Dan's body was taken away for an autopsy that might help others understand his disease, Mary wrote and pinned a note to his chest. It read: "I want you to know that this is my husband and the father of three children. He would have wanted you to do this."

Said Lahti, "I wanted them to see him as a person."

David Kessler, counselor to the dying and author, laments that long before death occurs many people start talking about the dying as if the person is no longer there.

He traveled to India last year to meet one of the world's great hospice nurses, Mother Teresa of Calcutta, shortly before her own death.

"I asked her what I should tell Americans about dying. `The dying need tender loving care, nothing more,' she said. `Please tell them not to be afraid of the dying.' "

For more on this topic, visit our site on the World Wide Web at http://www.last-rights.com (don't forget to use the hyphen).

(Lee Bowman is a reporter for Scripps Howard News Service in Washington.)