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Making the end of life better

Marian Grant believes her fellow baby boomers, all those millions of 40- and 50-somethings preoccupied with staying young, are ready to adopt a new mission. Join the movement to change the way Americans die, she urges. Let's make "dying well" a national priority.

Is that asking a lot of a generation that's in major denial about aging?

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Grant, a 50-year-old nurse practitioner, suggests that boomer power has already transformed the culture of health care. Look, she says, at what's happened to childbirth.

"When I was born in 1956, it was a highly medicalized procedure," she says. "My mother was not conscious for any of her three deliveries. My father was not in the room. My mother wanted to breastfeed, and that was an enormous hassle. In those days, you surrendered yourself to the medical system, whether or not that was an experience you wanted.

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"Then, over the years, individuals said, 'Hang on, I want my partner there. I want drugs -- or I don't want drugs. I want it to be natural, or very medical. I want it to be at home.' "

She says patients should be able to discuss end-of-life options the same way.

"Do you want it to be a very medical experience? If you really want to die at home, what would it take to make that happen? Have you talked to your loved ones about your wishes?"

Grant is convinced that a boomer-driven movement can reclaim death from high-tech machines in intensive care units. As middle-aged Americans confront the tough clinical realities of dying through their own parents' experiences, they will insist that the final stage of life becomes as personal and family-based as the first, she says.

"We're the choice generation, right? We're the ones who have 40 different types of mustard we can pick from. There are not a whole lot of choices in the hospital at the moment for people who are dying. You have to know enough to be able to say 'I need to see someone about pain management. My mother isn't comfortable and what are you going to do about that?'"

Grant coordinates palliative care as part of the geriatrics department at Johns Hopkins Bayview Medical Center. Her team includes a social worker, a physician and a chaplain. Their goal is to make sure that patients' last days are as meaningful and pain free as possible -- and that their loved ones are equally well served.

Palliative care helps reduce the physical, emotional and spiritual suffering that can accompany serious illnesses such as heart disease, dementia or cancer. Like hospice care, which falls under its purview, palliative care seeks to lessen the severity of symptoms rather than offer a cure. While hospice is usually designed for the last six months of someone's life, palliative services offer comfort care to people earlier in their illnesses. No particular therapy is excluded.

Last year, roughly one-third of all deaths in the United States were under the care of a hospice program, according to the National Hospice and Palliative Care Organization. And although hospital-based palliative care programs are increasing, there aren't nearly enough to serve the dying population's needs, says Ira Byock, 55-year-old chair of palliative medicine at Dartmouth Medical School and author of Dying Well: The Prospect for Growth at the End of Life.

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"We have a true public health crisis surrounding the way we care for people at the end of life," he says. "Although most people would prefer to die at home, only 20 percent do. About 60 percent die in hospitals, about 20 percent in nursing homes. ... If we don't make major changes in the way we plan for the last chapter of life, the baby boom generation is going to stress our health systems in ways they have never been challenged before.

"Our culture, and therefore our systems, are focused on avoiding anything to do with incurable illness, including frail aging, dying and care-giving. And because we're all so focused on avoiding them, when they happen, they happen badly."

'A personal approach'

Much of Marian Grant's job is educating folks on what lies ahead. As a former marketing executive, she knows how to tailor her pitches to a variety of audiences. When the palliative care team started working at Bayview, for instance, she realized the hospital staff could also use her guidance. Too many physicians considered her offer of palliative help an invitation to "give up" on patients.

"When we showed up, it was 'Oh, we're not ready for palliative care. We still think we could save this patient,'" Grant recalls. "So I'd ask, 'Do you think he'll go home?'

'"Oh, he's never going to leave the hospital," they'd say.

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"So when are you waiting to call us? Two days before he dies? Wouldn't it be nice to call us two weeks before? Maybe we'd get to know the family and could help them make difficult decisions." The palliative care team soon had all the referrals it could handle.

Mary Estes, 59, says the service "buoyed the family" during the final illness of her father, Bob Estes.

"They helped us come together to understand that this was not a situation he was going to recover from," she says. "It was professionalism with a heart, a more personal approach to medicine. It reminded me of when I was growing up in Dundalk and the family doctor would come to our house."

During Benjamin Trotta's final illness, family and friends phoned his son John for updates. Not only did Grant write detailed e-mails about his father's condition for him to take to family meetings, she also suggested questions he should ask.

"Miss Grant would say 'Didn't you want to know about this or that?' And then it was apparent to me that 'Yeah, I really did'," John Trotta, a 51-year-old Baltimore County resident, says. "It was like we had some kind of inside seat about what was going on."

While Grant talks about the potential of change, the nurse practitioner also serves as an example of it. A communications major in college, Grant spent her first 20 working years in marketing with Procter & Gamble. After the company bought Noxell in 1989, she moved to Baltimore, ultimately leading a global team that helped establish two new products, Cover Girl Outlast and Max Factor Lipfinity.

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Eventually she became weary of the corporate world. Her volunteer work at an AIDS group home and hospice in Baltimore began to claim more of her attention. After she and her husband, writer Dale Keiger, finished a 250-mile bike ride to raise money for AIDS, Grant finally pulled a typical boomer move: She left a highly profitable career to find work that was more spiritually rewarding.

Her search led to nursing. In 2000, Grant received her nursing degree from the Johns Hopkins University. Five years later, working and attending school part time, she earned her master's degree and became licensed as an acute-care nurse practitioner.

"I love the complexity of working with really sick patients. But I kept getting frustrated with how patients would die so badly in the ICU," she says. "Families would be unprepared and patients would be unprepared. We would chew up their last remaining days, doing stuff to them when it turned out we couldn't save them anyway. And they'd be too sick to go home."

Want a choice

Can boomers keep their parents from spending their last days with beeping machines and teams of strangers? Can they encourage intimate family discussions about end-of-life issues? Can they improve the process of life's final moments - creating a better system of care for themselves?

"The generation who's dying now is the 'World War II, Depression Era, Follow-the-Line, Do-What-You're-Told, Be-Grateful-for-What-You-Get' people," Grant says. "We're the people who are like 'Unh-unh. I want to do it my way, in a manner that fits my values. I want more information - and I want you to give me answers."

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Grant tells of a patient who, after consulting with her, decided he wanted to stop the dialysis that was treating his kidney failure and turn off the heart defibrillator so that he could go home.

On his last day in the ICU, the patient was surrounded by family members who flew in from around the country when they learned of his decision. He told tales they had never heard about World War II and enjoyed a hamburger his medical regimen had denied him. When he died at home three days later, his daughter called to tell Grant that he had gone peacefully, surrounded by those he loved.

"I feel really great after a call like that," she says. "This man was going to die anyway. But rather than dying in the middle of the night in the ICU with strangers there, he had the chance to say 'Goodbye' and to be in a comfortable place. He had some time to put his emotional affairs, and any other business, in order."

To Marian Grant, that doesn't look like such a bad way to go.

linell.smith@baltsun.com


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