Error processing SSI file
Nurse Peg Nelson, with cancer patient Karen Reed, started the comfort care program for patients at St. Joseph Mercy in Pontiac. "They're dying -- we just need to talk about how they want to die," Nelson says.The Cost of Dying
End-of-life choices wrench Michigan families
Ethics: Abandoning life-saving efforts can conflict with beliefs
Most of Mary Rose Miller's days are spent resting quietly in her Reed City home. She has chronic heart disease and has decided to die at home.
Monique Roper, right, and her daughter, Shirnique Palmer, share a fond memory of Roper's mother, Shirley Palmer. After her death, Roper got a tattoo of the title from her mother's favorite song and the word "mom."
Bonnie Biers, Hospice of Michigan case manager, comforts Mary Rose Miller. "I don't want to be hooked up to machines," Miller says. "I'd rather be home. I don't want to be tied down away from my kids."
Comment on this story
REED CITY — The crushing pain hits Mary Rose Miller’s chest about once a week now.
Each time, it could be the heart attack that kills the 54-year-old woman. But her family doesn’t call an ambulance or rush to the emergency room. They give her a cocktail of drugs to open her blood vessels and ease the pain. And then they wait for the next time.
Miller is dying of chronic heart disease. And she has decided to die at home, without the beeping and tubes and mounting bills that come with hospital care.
“There isn’t nothing they can do, and I don’t want to be hooked up to machines,” Miller said. “I’d rather be home. I don’t want to be tied down away from my kids.”
Miller’s decision highlights a dilemma that is dividing both the medical community and families: How should we care for dying patients and when do we let go? America’s 76 million baby boomers face these questions as they try to cope with parents’ deaths and, eventually, their own mortality.
Medicine is getting better at keeping the chronically ill alive, but the result can be a drawn-out and anguishing death.
Research has shown that focusing on comfort rather than a cure for dying patients saves money and dramatically improves quality of life.
But abandoning efforts to save a patient’s life — even in the final days — delves into a gray area of medicine that often conflicts with religious and moral beliefs. The issue is complicated by the widespread American belief in preserving hope and prolonging life at almost any cost.
Other industrialized nations years ago embraced comfort measures for terminally ill patients, which helped them avoid the health care crisis confronting the United States.
“There is clearly a view that death is optional,” said Dr. Peter Ubel, a professor at the University of Michigan. “Our belief in America that technology can save lives far surpasses that of other countries. Ultimately, hope comes into play.”
It was November 2001, a cold month in northern Michigan, when doctors told Miller they could not fix her heart.
The former diner waitress, known for making deliciously rich meals and baked goods, is diabetic. Decades of eating sweets and other junk food damaged her heart valves and weakened her organs. She needs oxygen 24 hours a day and help to take a shower. Heart surgery is too risky.
So she signed up with Hospice of Michigan, a nonprofit organization that helps care for dying people in their homes. They provide most of her 13 medicines, a hospital bed at her home and frequent visits by nurses, social workers and a minister. The cost — about $120 a day — is covered by Medicare, the federal health plan for the elderly and disabled.
Without hospice care, Miller would be forced into the emergency room every time she suffers severe chest pain. That entails an $800 ambulance ride. Once there, the standard treatment for chest pain is an EKG test, chest X-ray and blood tests — then the same medication Miller receives at home. The cost for such a visit is about $10,000. And staying in the hospital costs at least $600 a day.
By choosing to stay home, Miller has saved government health plans hundreds of thousands of dollars in hospital bills.
Advocates for better end-of-life care are quick to insist that dying patients should not make decisions based on cost, but instead focus on choosing the death that suits them best. But it’s hard to ignore the savings that come with focusing on comfort care at the end of life instead of undertaking expensive curative treatment not likely to work.
Medicare spends on average nearly $40,000 per person in the last year of life, more than five times the average cost for other years.
It’s natural for costs to increase because dying patients are presumably the sickest they’ve ever been. What’s important, experts say, is to spend these dollars wisely so that dying patients get the most benefit.
Hospice use grows
More patients than ever before are turning to hospice care. Nearly 1 million Americans used hospice services last year, up from 210,000 in 1990.
But many are still hesitant because Medicare requires hospice patients to forgo curative treatment in exchange for comprehensive comfort care.
That’s not a fair choice, said Dottie Duermo, CEO of Hospice of Michigan. In a study with the University of Michigan, the nonprofit found that patients who could receive intensive medical treatment and hospice care simultaneously had higher quality of life and actually spent fewer health care dollars.
“They spent less time in the hospital and had fewer visits to the emergency room,” Duermo said. “It’s really terrible that people have to choose either one or the other, extend their life or have comfort care.”
To fill in the gap, hospitals in Michigan and across the nation are launching comfort care programs — called palliative care — to help provide a tranquil death for the very ill.
Even when patients are hospitalized, moving them from an intensive care unit to a regular hospital room can reduce costs by more than $2,000 a day. And a nationwide study of the dying showed that patients and their families are often more comfortable in a more private and quieter setting.
“They’re dying — we just need to talk about how they want to die,” said Peg Nelson, who runs an award-winning comfort care program for patients at St. Joseph Mercy in Pontiac. “Are they going to want to die hooked up to life support and on a chemotherapy drip until their last minute?”
Advocates for better end-of-life care say U.S. hospitals by and large focus too much on curing and not enough on helping patients cope with dying. It’s a difficult balance to find because patients often want to continue fighting even when the chances for recovery are slim.
“It’s very rare to find someone who has a zero percent chance of responding to a treatment,” said Ubel, the U-M professor. “For a patient who’s facing death, as long as that number isn’t zero, there’s hope.”
The right to fight
It was hope that sustained 59-year-old Leon Harris until his last breath.
The longtime River Rouge resident worked as a community developer trying to revitalize business in Detroit and its inner suburbs. He was enamored by Egyptian history and often went fishing in Canada.
In spite of his vibrant life, Harris’ lungs began to fail this summer after 30 years of smoking a pack of Benson & Hedges cigarettes a day.
For more than two months this summer, he wasn’t strong enough to breathe on his own. So he stayed in a hospital intensive care unit on a ventilator hoping his lungs would grow strong enough for an operation called a lung reduction that would buy him some time.
Ventilators are far from comfortable. They require a plastic tube threaded down the throat to the lungs, which makes it impossible to talk or eat. Patients must undergo sedation to prevent the human body’s natural gag reflex.
Despite the discomfort Harris suffered, there was no talk about stopping treatment, his wife, Arlene, said. He wanted to get better.
“There was no need for that discussion,” she said. “The bottom line was to fight as long as his body was able to fight to get him strong enough to have the surgery.”
Five weeks into his final hospital stay, Harris came off the ventilator but still required constant oxygen. The hospital suggested he move to a long-term care facility, a step down from a hospital setting but a place where Harris could still use the ventilator if needed. But he never had the chance to make that decision.
On Aug. 2, he died.
His wife, Arlene, says she doesn’t regret the months in the hospital.
“I know there was only so much they could do for him,” she said. “He was relentless in all that he did, even in those last days of his life he just was not going to give up.”
Harris had full health insurance, and his wife expects it will cover all of his hospital bills. Although the hospital costs are invisible to her, his weeks in intensive care will cost their health insurance company tens of thousands of dollars.
This is the type of bill that, when repeated for the thousands of patients in intensive care units across the country, taxes the nation’s health care system.
Despite the high costs, doctors and medical ethicists say that dying patients have the right to fight until their last breaths.
“In effect, you should be provided with a menu of options and pick what suits you,” said Dr. Howard Brody, a family doctor and ethics professor at Michigan State University. “If you want to fight to the last breath, we’ll do our best to help you. If you want to have a more peaceful death, we’ll take good care of you too.”
Choice fills demand
Offering patients a choice of how they want to die plays to Americans’ growing demand for better service from the health care industry.
“We’re a consumer-driven generation,” said Dr. Diane Meier, director of the Center to Advance Palliative Care. “We’re used to getting our latte just the way we want it. So if death has to come, we want it to be a good death.”
Ideally, doctors should present a range of treatment options, from aggressive hospital care to comfort-driven hospice care, say advocates fighting to improve the dying experience for Americans.
All 50 state legislatures have enacted laws that allow people to make decisions about their medical care before they become too ill to communicate their wishes. The state of Michigan recognizes medical power of attorney — which allows a patient to appoint someone else to make medical care decisions.
Michigan courts do not recognize living wills, which allow patients to write down the type of treatment they want. Doctors and family members often use them to guide end-of-life decisions. However, patients who do not legally appoint someone else to make medical decisions can run into problems if they cannot communicate and family members disagree about what to do.
Problems can also arise if, for example, an elderly nursing home patient is rushed to a hospital in respiratory distress and emergency room doctors aren’t aware of their wishes.
Doctors can make these decisions even tougher because many remain reluctant to tell patients and their families that death is imminent and create false hopes that last-ditch treatments could work, said Dr. Robert Frank, associate dean of academic and student programs at Wayne State University’s School of Medicine.
In one study, Michigan State University researchers found that almost half of physicians didn’t report survival chances to cancer patients unless the patient asked for them because they wanted to preserve the patient’s hope.
“Most doctors think, ‘I didn’t come to medical school to give up,’ ” said Frank, who introduced hospice and end-of-life care to Wayne State’s curriculum. “They came to medical school to sew up holes in kids’ hearts so they can go back to jumping rope, or some variation of that scenario.”
That often leaves patients only days away from their last breath — and sometimes even unconscious — before they and their families realize the end is near.
“Nobody wants to talk about dying until they’re doing it,” said Meg Campbell, a nurse who runs a consultation service for dying patients at Detroit Receiving Hospital. “And (medical professionals) don’t really know that much about dying. Add that up, and it’s easier to stick a tube into somebody than sit down and tell them they’re nearing the end of their life.”
That’s what happened to Shirley Palmer. At age 63, she was a tough and stubborn woman who loved music and hated hospitals.
After a diagnosis of breast cancer and a mastectomy in 2002, she moved from her home in Battle Creek to Detroit to live with her daughter, Monique Roper.
A week later, Palmer’s health took another turn for the worse. Her daughter rushed her to the hospital once again. Doctors performed a barrage of tests while she slipped in and out of consciousness. They found kidney failure, emphysema and a heart condition. After 10 days in the intensive care unit, Palmer’s daughter took her home.
No one mentioned that Palmer’s conditions could be life-threatening, Roper said.
“They said she was really sick, but I just didn’t know how sick she was,” she said.
Two weeks later, Palmer lost consciousness again. An ambulance rushed her to another hospital, where doctors performed more tests and sent her home again — this time referring her to hospice care.
“They didn’t tell me, when she goes home, she’s going to pass away,” said Roper, who had never heard of hospice care. “The first person who mentioned the word ‘dying’ was the hospice nurse.”
Palmer died less than two days later.
For Roper, her mother’s death was sudden and shocking, even though Palmer’s health has been in decline for months.
“I’m so thankful for those last days at home because my mother would not have wanted to die in a hospital,” she said. “I just wish I had more time to let it sink in. I had to grasp everything all at once.”
You can reach Sheri Hall at (313) 223-4686 or shall@detnews.com.
Copyright © 2004
The Detroit News.
Use of this site indicates your agreement to the Terms of Service (updated 12/19/2002).