Dying is a busy and expensive time. The typical senior in Tampa Bay who is chronically ill spends almost two weeks in the hospital during his last six months of life, according to the most recent Medicare data compiled by the Dartmouth Atlas of Health Care. • He sees doctor after doctor. Procedures are scheduled. Tests are ordered. • They may buy time, but they can't cheat the end. • About a third of these patients die in a hospital. More than a third receive hospice care. • End-of-life care is always an emotional topic. And now as Washington and the rest of us debate health care reform, the subject is more fraught than ever. Little is black and white in the decisions that most of us will face. • When to treat? When is death unavoidable? • The toll of such choices on families, perhaps kindly, often does not include the full, staggering medical bill. In Tampa Bay, Medicare, the government program that provides health care for seniors, pays almost $27,000 per enrollee diagnosed with chronic illness for care during the last six months of life. • Even if a patient's family doesn't see all of the bills, they add up. Across the nation in 2006, nearly half of Medicare fee-for-service money was spent on only 5 percent of the patients. Those costliest patients tend to include those in their last year of life, which makes sense on one level. This is when people are sickest. But concern is growing that we are throwing intensive, expensive treatments at people who have little chance of benefiting. • Nothing in life is free. This is particularly true of dying. • We all are paying for end-of-life care, as a society and with our taxes, if not directly out of our pockets for our loved ones. As we consider options for health care reform, it is worth getting past the hypothetical granny so often talked about in recent days to real people. With that in mind, several families in the Tampa Bay area offered to share their stories about facing the end of life.
Dawn Sims' father went to see the doctor on a Monday, worried that his urine was dark. He got an ultrasound on Tuesday, but no conclusive answers. On Wednesday, tired and jaundiced, he went to the hospital.
By Thursday, the family had a diagnosis: Pancreatic cancer, stage four. It had already spread to the liver. Surgery was scheduled for Sunday.
Doctors could offer Richard Dale Engle, 75, only three to six months to live. To buy that much time, he would need palliative surgery, then chemotherapy. Money wasn't an issue. He had Medicare and gap insurance.
He had surgery, then spent 20 days in the hospital. Mr. Engle had a tube in his nose, a urinary catheter, and a drain in his belly. Still, everything seemed to be getting better until complications arose, and doctors had to operate again.
"He had the second surgery, and it knocked the wind out of his sails," said Sims, a nurse at the hospital. The family decided no more surgeries. "This isn't a good idea. He can't handle it."
Her father was released briefly, then re-admitted in renal failure. Mr. Engle told his daughter he'd had enough. He wasn't going to make it to chemo. He wanted to go home.
Sims went home and vomited. Then she called hospice, which had been working with the family since the earlier hospital discharge. Arrangements for home care were made. By week's end, it was clear he needed to go to a hospice center.
Care providers kept her father as comfortable as possible. Sims celebrated her 35th birthday by his bedside. Her father asked that she be given an angel cameo. On the back was the inscription, "watch over and protect me."
She feels that's exactly what she did, ensuring her father had the pain medication he needed as his condition worsened. Long before, they talked about his end of life wishes. Sims strongly believes that all families should have such conversations.
Four days after her birthday, the hospice medical director gave the family a 36-hour warning. Death was imminent. Sims and her mother were sitting at his bedside that Thursday morning, nearly six weeks after the initial diagnosis.
They talked with a neighbor, watching each breath that Mr. Engle took and waiting for the next one. Until it didn't come. Letitia Stein, Times Staff Writer
Katie Root: She didn't want tests
Katie Root remembers the day in July 2007 when her mother no longer wanted to eat.
Betty Brumfiel had just turned 90 that month and had dementia. But initial tests couldn't determine what was causing her to gag whenever she put food in her mouth, her daughter said.
"They could not find anything," Root said. "The only thing left was to put her in the hospital and do more tests."
Her mother wouldn't have it. "I don't want any of these tests," Root recalls her mother saying.
Mrs.Brumfiel's situation worsened by the month. By August, the only thing she could take was the nutritional supplement Ensure. By September, even that proved difficult.
"We knew in September that this was not going to end on a positive note," Root said. "I think she was tired. She was ready."
Root went to her mother's doctor and decided to get hospice involved.
Root, an only child, said she and her mother never really discussed dying. "But we had things in place," she said.
By October, her mother could only drink water. Nurses were there in the final hours, giving Mrs. Brumfiel morphine for her pain. On Sunday evening, Oct. 21, she passed away peacefully at the home of Root and her husband, Charlie.
Root's experience illustrates the fact that even as government leaders work to overhaul the nation's health care system, many are happy with the way it works now. Medicare took care of the costs, doctors were helpful and supportive, and the hospice workers "were absolutely wonderful," Root said.
"I don't want (President) Obama to get this screwed up. I'm very happy with my insurance and my doctor," said Root, a 67-year-old retired teacher. "I lost my mom, but had a very positive experience with our doctor."
Richard Martin, Times Staff Writer
Karen Volk: She's alive but has faded away
Karen Volk's heart stopped on a cool night in early December. A heavy smoker, her brain was without oxygen for one to 18 minutes, before emergency responders resuscitated her and took her to the hospital.
Three days later, her family was told that she was brain dead. For the next 31/2 months, they deliberated what to do in the face of intense pressure from the hospital, said her mother, Elly Wencka.
"You have to make a decision," she recalls being urged. "What they meant was either pull the plug or get her out of here."
Wencka is a devout Catholic. Her daughter's husband is not. They argued about the "Do Not Resuscitate" order on her chart. At the time, the news was full of stories about a court case involving a woman named Terri Schiavo, whose family could not agree on what to do.
"I've kind of been brought up that life is precious. I'm totally against abortion," Wencka said. "You just don't pull the plug on somebody who's got some signs of maybe coming back. You hear those things on TV where people have been sleeping for years and then they wake up."
She saw signs of hope for Mrs. Volk, who eventually opened her eyes and began to focus on faces. Mrs. Volk's sister, Donna Wencka, tied a balloon to her toe and asked Mrs. Volk to signal that she heard her by moving it. The balloon bounced up and down.
But medical bills were mounting. Mrs. Volk had no insurance, after losing her job about a year before the heart attack. Her mother was told that she did not qualify for Medicaid, the government health care program for the needy. Wencka said she found out inadvertently that the hospital was already collecting money from Medicaid for her daughter's care. Eventually, her daughter's husband filed for bankruptcy.
Only one nursing home would accept Mrs. Volk, her mother said, but it wanted her to have a DNR order. So Wencka and Donna cared for Mrs. Volk, who was bed-bound and unable to feed herself, at their east Hillsborough home.
That was 41/2 years ago. The signs that her mother found so promising in the early years have largely faded. Mrs. Volk used to call out "Mama" from the bedroom. She could share her birth date and where she was born. Now she says few words, and only when on medication.
Wencka blames the lack of rehabilitative services for her daughter, now 51, when she most needed them. She believes that Mrs. Volk has suffered additional brain damage during three bouts with pneumonia.
She believes that a national health care program would have resulted in better care for Mrs. Volk. The family has spent years navigating the current patchwork of government safety net programs. When aid has become available, Wencka frequently has found it wasteful.
She prays for a miracle. But Wencka is angry at the medical system. Why is the government willing to spend thousands a month on a nursing home for Mrs. Volk, but has had little to offer her family at home? Why restart Mrs. Volk's heart, only to write her off?
"Why bring her back, if you're not going to help her later? It's just ridiculous, because it's turned our lives upside down."
Letitia Stein, Times Staff Writer
Deborah Grassman: Letting go led to a peaceful end
Deborah Grassman says her mother's final eight days were among the best of her 90-year lifetime.
Three generations of her family took turns snuggled up to Juanita Jones in the bed where she rested in Grassman's living room, overlooking a glorious oak. Great-granddaughters spooned sherbet into her dry mouth. Friends prayed with her and sang her favorite hymns.
"I just love this," the dying woman said repeatedly. "I'm so lucky. I'm so happy.''
Mrs. Jones' death on June 9 was peaceful, even beautiful, her daughter says. The week before that, however, was another story. Her mother had lived for more than a year at a St. Petersburg nursing home, and was well cared for. After her 90th birthday, Grassman noticed her mother was sleeping a lot and eating little. She had cancer. Her body was giving out. Grassman, a nurse who has spent much of her career working in hospice programs, knew she was dying.
Mrs. Jones' caregivers, however, weren't giving up. Staff called the doctor to order physical therapy that continued despite the ailing woman's complaints. More medical tests were discussed. A dispute arose: Did her Do Not Resuscitate order mean she shouldn't get further medical treatment, or just that her heart wouldn't be restarted? Grassman called in Suncoast Hospice and brought her mother home.
"I've never been more proud of my family than I was during that week,'' said Grassman, adding, "When my time comes, my grandchildren are going to know how to care for me.''
She says her mother's caretakers were neither insensitive nor incompetent. She blames the current "geriatric culture'' that emphasizes distracting people with activities rather than helping them face their end.
"There's a richness in the time surrounding death that defies earthly understanding,'' Grassman said. "And as much as I don't like having to experience it, I wouldn't want to miss it.''
Deborah Grassman is director of the hospice program at the Bay Pines VA Medical Center, and author of a new book, "Peace at Last: Stories of Hope and Healing for Veterans and Their Families," ($19.95; Vandamere Press.)
Charlotte Sutton, Times Health and Medicine Editor