DYING WITH DIGNITY

September 10, 1999
		Most older Americans say they want to die a quiet death at home, but the fact is that millions don't get their wish. Health Correspondent Susan Dentzer examines the American experience of death and dying amidst dazzling technological advances. The Health Unit is a partnership with the Henry J. Kaiser Family Foundation.

An interview with Dartmouth College Economics Professor Jonathan Skinner Interviews with hospice professionals, in RealAudio: Sun Health Hospice Director Stephanie Cambio Hospice physician Dr. Gerritt Terpstra Hospice Case Manager Jackie Benaroe   The AIDS Crisis. Aug. 23, 1997: Public health in Turkey after the Earthquake July 20, 1997: Treating Heart Failure July 16, 1997: A Bill of Health? July 8, 1997: An Alzheimer's Vaccine? Remaking Medicare June 24, 1999: Should doctors unionize? June 7, 1999: Mental Health Conference May 27, 1999: A Choice on Heart Disease Jan. 27, 1999: Treating Parkinson's Disease. Jan. 4, 1999: Long-term care. Oct. 30, 1998: Multiplying brain cells. March 12, 1997: Alzheimers findings The NewsHour's Health Spotlight. Browse the NewsHour's Health coverage.   Dr. John Wennberg Del Webb Corporation Sun City West, Arizona Sun City West, Info Sun City Georgetown, Community Organization Sun City, Tampa	SUSAN DENTZER: Sun City, Arizona, is one of the oldest and best-known retirement communities in the country. Mention the name Sun City and it conjures up images of endless rounds of golf -- and of tan, fit seniors making the most of their supposed golden years. But there's also another side to Sun City, where dealing with issues surrounding death is the stuff of everyday life. It's even a topic of concern to some of the area's most active residents: the dance and acrobatic troupe known as the Sun City Pom-Poms. JOAN SULLIVAN: Once you lose that quality of life, I definitely don't want to prolong it. Quantity means nothing to me. I would go tomorrow if I could have quality up until that point. GERI HOFFMAN: Well, you know, we see it out here too. Don't you think we do girls? We live right here where we're all trying to enjoy our last years, and so we know about health, and we know about hospice, how great it is.
	A different kind of death
	SUSAN DENTZER: For eighty year-old Olaf Buttedahl, death and dying are major preoccupations. He still can't forget the pain his wife suffered while she was dying of leukemia four years ago. He and his daughter, Janice Spratte, recall the painful memory. JANICE SPRATTE: She decided she was going to have treatment one more time, and it was awful. The chemo was awful, her life afterwards was very hard for her, for us, and everything. She spent six weeks in the hospital when she was undergoing chemo for the leukemia. SUSAN DENTZER: Buttedahl, known as "Ole," still breaks down when he thinks about it. OLAF BUTTEDAHL: We didn't know what was going to happen. We were hoping... SUSAN DENTZER: His wife's experience has led Buttedahl to contemplate a very different kind of death, now that he has lung cancer that has spread to his backbone and brain. JACKIE BENAROE: (speaking to Ole) Let's go around this way. SUSAN DENTZER: Rather than spending his last days in the hospital or undergoing heavy doses of chemotherapy, he has chosen to remain at his Sun City home. There, he's under the care of a local hospice and his doctor says he has just months to live. OLAF BUTTEDAHL: If you're taking more aggressive treatment, and having been through that once, that was enough. SUSAN DENTZER: One of Ole's caregivers is hospice nurse Jackie Benaroe. She visits regularly to check on his condition -- and to make sure his medications are keeping him as comfortable as possible. JACKIE BENAROE: But, you're coughing more -- this I notice. JANICE SPRATTE: Yeah. Well, the cough syrup is helping but his throat is feeling really dry. OLAF BUTTEDAHL: Sore. JACKIE BENAROE: You still taking that swish and swallow? And your pain, how is your pain being controlled? OLAF BUTTEDAHL: I'm a little stiff in the morning. SUSAN DENTZER: As much as she is doing for Buttedahl, Benaroe says she welcomes having a window on this final stage of his life. JACKIE BENAROE: And if you allow nature to take its course, it's really okay. It's really okay. It's not terribly frightening, and it's not uncomfortable, not painful. It's just natural, and when people have support, they show an enormous amount of courage. JACKIE BENAROE: (talking to Ole) Okay.
	Variations by region
	SUSAN DENTZER: Studies show that most older Americans are like Ole Buttedahl: They would prefer to die a quiet death at home, rather than in a hospital or nursing home. But the fact is that millions don't get their wish -- and they receive far more medical care near the end of life than they may want or need. That raises serious questions about the American experience of death and how the nation squares individual preferences with growing medical capabilities and financial limits. As a result, researchers are closely examining areas like Sun City that seem to do a better job of achieving a balance. One of those researchers is Dr. John Wennberg, a professor at Dartmouth Medical School and an expert on variations in health care. For several years, he and his research team have closely tracked care delivered under Medicare. DR. JOHN WENNBERG: Sun City, Arizona is at the low end of the spectrum. SUSAN DENTZER: The research has yielded a number of stunning conclusions. For one thing, it has revealed huge variations nationwide in the amount of medical care that patients on Medicare receive. DR. JOHN WENNBERG: One of our best ways of getting at this is looking at experience in the last six months of life. Making one or more trips to the ICU in the last six months of life, half the population in the Miami region will be doing that, compared to about 22 or 23 percent in Minneapolis. Other places like Sun City are much lower, around 15 to 16 percent of the people will be in the ICU in the last six months of life. SUSAN DENTZER: Yet Wennberg says there is no evidence that patients in areas like Sun City are at all harmed in the process. Surprisingly, whether people receive high or low levels of care doesn't seem to make any difference at all in how long they live. DR. JOHN WENNBERG: We basically see no relationship between spending more and living longer, suggesting that a whole amount of resources might be available for reallocation to more effective uses. SUSAN DENTZER: And, in fact, says Dartmouth economist Jonathan Skinner, if excessive levels of care could somehow be eliminated, the savings could be spectacular. JONATHAN SKINNER: The fiscal implications for differences in treatment patterns is really enormous. If medicine were practiced in the rest of the country as it is in Sun City, you could at least extend the Medicare Trust Fund solvency for another 10 years. SUSAN DENTZER: As in other areas of the country heavily populated by the elderly, Sun City's local health-care system has no shortage of hospital beds or of physicians catering to seniors' needs. Rather, most of the differences between it and other places can be traced to a willingness to prepare for the inevitability of death. That translates into a supportive community culture that bolsters people like Ole Buttedahl. OLAF BUTTEDAHL: And you get an awful lot of support here. My neighbors around here, they drop in every day. JANICE SPRATTE: Dad was always going over and helping somebody out. And if they had anything broken Dad could fix it. SUSAN DENTZER: A community culture permeates the local health-care system, and especially the private nonprofit provider at its core -- Sun Health. It boasts two hospitals, a hospice, extended care facilities and a new center for Alzheimer's patients. The system draws on a vast network of community volunteers who are just as likely one day to end up as patients. Among their tasks is to help others in the community prepare for serious illness with such devices as this so-called Vial of Life. OLGA WALKER, Volunteer: You know, you just put all your health information on this little form in here, and then you have a little red tag that you put on your refrigerator. SUSAN DENTZER: It has everything -- your name, your address, all the prescriptions you're taking. Oh, I see you can even indicate your funeral home preference. KEN SWICK: The Vial of Life gives past medical history for the paramedics. SUSAN DENTZER: It's a critical tool that Sun City's emergency medical technicians rely on when they arrive on the scene of someone in distress. In addition, many people also take the time to complete so-called advance directives. These indicate whether or not they wish to undergo heroic life-saving care in an emergency. These measures have produced big changes, says Ken Swick, who coordinates emergency medical services for the Sun City Fire Department. KEN SWICK: Twenty-five years ago the thought was, 'We're there, we're going to save somebody to whatever degree we can,' and through education of the public, we see more advance directives and more people that are informed about their choices.
	Erring on the side of doing less
	SUSAN DENTZER: But day in and day out, Sun City's people and their health-care providers still struggle to find the balance between costly care that will extend life and care that is probably futile. Perhaps nowhere is that balance harder to find than in the hospital intensive care unit, or ICU. Scarlett Pegram is a nurse in the medical ICU at Sun Health. Like other units of its type, the ICU is a testament to advances in medical science of the past half century. But Pegram says the very sick patients who enter it don't always come as clearly marked as people who will either benefit from very intensive care or people who won't. SCARLETT PEGRAM: We often see patients who require more interventions, in more than one area -- lungs, heart, kidney, gastrointestinal. Sometimes the things that we do to help one system hurt another and it's a balancing act trying to keep everybody in homeostasis, happy. SUSAN DENTZER: With so much technology available to help so many very sick patients, Dartmouth's Dr. Wennberg says it can be extremely difficult for medical personnel not to err on the side of doing more. As a result, changing the culture is tough going. DR. JOHN WENNBERG: It's hard when you're in the trenches, and it's hard when there's an intensive care bed there, and there's a very sick person coming in, not to use it. You can't do that, because all of your ideological bones say do it. SUSAN DENTZER: For understandable reasons, families of patients often feel the same way. Keith Tallberg's mother, Nell, is 77. Among other things, she suffers from advanced liver disease and congestive heart failure, and previously had breast cancer. KEITH TALLBERG: We are going to move her tomorrow to physical therapy and speech therapy because she's a stroke patient and she's come back from that. So they're right on top of it. DR. WALTER NIERI: This lady nor her son has any idea of what is going to happen to this lady. SUSAN DENTZER: Dr. Walter Nieri, discussed her case with other Sun Health providers training to become specialists in geriatric medicine. DR. WALTER NIERI: I doubt that this lady will live for 6 months. So hospice needs to be approached or the idea or concept of hospice. Who's going to be the one, the bearer of breaking the serious news - all of a sudden the realization Mom's got a life threatening and perhaps a terminal illness that we are dealing with? I'd really like to discuss it with the patient first and then have a family conference so everybody is on the same page.
	A matter of when and where
	SUSAN DENTZER: Shortly after this conference, Nell Tallberg's physician discussed her case with her son Keith. They decided that the best place for her was at home -- although they didn't rule out the option of hospice care in the future. It is the job of Sun Health's hospice to help patients and families make the transition from extending life to preparing for death. Although most of its patients remain in their homes, the hospice also has a 12-bed facility for those who need it. At its center is a serene atrium that is director Stephanie Cambio's favorite place. STEPHANIE CAMBIO: It's surrounded by all the patient rooms, as you can see, and so all the families and patients are able to enjoy the beauty that's out here. SUSAN DENTZER: The atmosphere is only one point of contrast between the hospice and the ICU according to hospice physician Dr. Gerritt Terpstra. DR. GERRITT TERPSTRA: There is a different way of doing things, and it doesn't mean pills, or intravenous injections, or IV's or monitors. Just let it go -- and a lot of physicians don't understand it. It's -- it's not medical knowledge that drives hospice. It's compassion and heart that drives hospice. SUSAN DENZTER: And that is just what Ole Buttedahl says he wants as his own death nears. OLAF BUTTEDAHL: Well, we're all going to die, that's a known fact. It's just a matter of when and where. So you make a decision and you stick with it. JANICE SPRATTE: June 18th is when they got married. SUSAN DENTZER: In effect, it's a quintessentially Sun City choice. JACKIE BENAROE: In these situations it seems when it goes well and it's allowed to proceed naturally, people shine. They repair wounds -- and the person who's dying finds within themselves again a spirituality that I think they just didn't know they had also. And something that is so unknown that we all avoid talking about suddenly becomes a part of them and -- they learn to accept it. Sometimes there aren't words to describe it. It's magical. SUSAN DENTZER: Specialists like Dr. Wennberg note that these end-of-life stories will be replayed as America's population of aged doubles over the next 35 years. As a result, they say, it's crucial that the nation face facts. While more health care is more costly, it isn't necessarily better -- either for the patient or the federal budget. And that may make it increasingly appropriate for more communities to consider doing things the Sun City way. JIM LEHRER: A postscript: Olaf Buttedahl died in the hospice residence at Sun City shortly after we prepared this report.