It's hard to prepare for the end of life. It's hard to look at the issues. It's hard to say goodbye to the people you love. And it's hard to prepare for someone that you love to die. —Nancy Paulford, nurse administrator for Intermountain Homecare Hospice
The fifth article in a five-part series. Read the first, second, third and fourth articles: "How will I die: Preparing your family, directing your care," "How will I die: Finding hope in hospice," "How will I die: A good life, a young death?" and "How will I die: Negotiating death's details"
SALT LAKE CITY — When Francis Kemp, 79, went into the Florida hospital in 2000, she was hoping to be treated for her heart failure. She wanted to live. But she also made it clear she wanted to live on her own terms, without expensive or invasive treatment. She agreed, along with the doctors, on a "time-limited trial" of monitoring and diagnostic tests in intensive care to see if they could restore some of her health.
When it became clear treatment was not helping her, she rejected a ventilator, thanked the staff and went home. Surrounded by the family she so loved, she died two weeks later. She'd honored her own wishes for how her life would wind down should she become desperately ill.
Not everyone is as clear about what they want, experts agree.
"It's hard to prepare for the end of life. It's hard to look at the issues. It's hard to say goodbye to the people you love. And it's hard to prepare for someone that you love to die," says Nancy Paulford, nurse administrator for Intermountain Homecare Hospice.
People used to die at home after brief illness. Some experts say that since we moved death out of our parlors and bedrooms and sent it off to hospitals and skilled-care facilities, it has been trying to find its way back home. And to some extent — for some people — it's true. The Institutes of Medicine noted more than a decade ago that most people would like to die at home, with conservative, symptom-relieving care if there's no hope of a cure. Most deaths tend still to take place in facilities. Some families want it that way, others don't. There are costs associated with every decision at life's end.
But both the emotional and the financial are eased to some degree — sometimes a lot — when advance planning is done, whether it's designating a spokesperson should you be unable to direct your care to specifying the funeral arrangements you want.
Tackling the taboo
"We are a death-denying society," says Kurt Soffe, owner of Jenkins-Soffe Funeral Homes and a spokesman for the Milwaukee-based National Funeral Directors Association. "...A lot of folks honestly believe if they plan, they will cause death to happen. I can't tell you how many people say that."
Medical technology can now prolong life even when a patient has a terminal disease. That raises questions about where you want to die, how you may want to spend your final days and at what cost.
The cost is not always visible to the consumers of healthcare, who may be shielded by third-party payers like Medicare or insurance. The Congressional Budget Office estimates that the price tag for Medicare will increase to more than $900 billion from $555 billion within the next eight years. In that Medicare spending, between one-fourth and one-third goes to medical bills for a patient's final year of life, most of it in the last 30 days. The high costs of medical care is a point of contention in the national healthcare debate.
"It's a very serious problem and not a problem for which there is a good political solution," says former Utah governor and former secretary of Health and Human Services Mike Leavitt.
Medicare spending last year devoted to patients' last two months of life was greater than the budget for Homeland Security or the Department of Education.
Still, it's not surprising that most care is incurred when a patient is sickest, Leavitt agrees. After all, you use more gas when you're driving than when you're walking. But he wonders: If doctors were compensated for time helping families work through the issues, including how much an expensive treatment or test was likely to benefit someone, would they make different and perhaps less expensive choices?
Dr. Michael Galindo, hospitalist and palliative care medical director for Intermountain Medical Center and a hospice, co-chairs the Intermountain Guidance Council on Compassionate Strategies for Advanced Illness. He suggests asking hard questions of healthcare providers: Would you be surprised if I (or my loved one) were to die in the next year or two? Why? What kind of plans should we make in case the illness gets worse? What should we look for to tell us it is getting worse? There are questions to ask about a specific illness, as well. The most important may be what it is hoped a proposed treatment will do. "Will it cure me? Will it slow down the disease and by how much? Or do you simply hope it will make me more comfortable/functional?"
The Physician Order for Life-Sustaining Treatment (POLST), worked out between the individual and the doctor, is the "most effective way we have to keep from getting expensive treatments you don't want," says Maureen Henry, executive director of the Utah Commission on Aging. For informed decision making, the conversation needs to be clear in terms of expected benefits and what kind of care would be involved. That can help someone sort out whether an aggressive treatment that offers little hope is wanted or not. She saw the power firsthand when Kemp, her mother-in-law, rejected invasive and expensive treatments that would at best have prolonged her dying process.
But experts warn that making health care decisions on cost can be tricky. That's when loaded words like "rationing" come up. And some of the numbers that are used should come with an explanation. Dartmouth Medical School released an oft-cited study in 2008 of health care costs at life's end that showed big disparities exist among hospitals in different regions of the U.S. For example, UCLA Medical Center in Los Angeles averaged $93,842 per capita, while those at the Mayo Clinic in Rochester, Minn., cost $53,432. The implication is the money was wasted. But they only looked at cases where the patients died. Critics argue that sometimes you don't know if someone will live until you see if they do, in fact, live.
Whether an expensive treatment seems like a good investment may boil down to whether the money's being spent on someone you know. Leavitt cites an aggressive cancer whose treatment cost averages more than a quarter-million dollars. It gives patients about 17 months who would normally otherwise die in about five. Would he try the treatment if he could get another year?
"The answer is yes I would if I could come up with the money, I would. It means I could spend time with my family. I could do other things I would like to do. But then it dawned on me: Because you might be able to do that, does it mean every American has a right to do that? And if that's true, can we afford it as a country or will it break us?
"We are at a time right now where we are facing pressures we have never faced before. We have never had our bond ratings reduced. We've never had a trillion-and-a-half dollar deficit. We've never had $15 trillion in debt. We are facing this with a reality now that is unlike anything we've faced before," Leavitt says.
Still, he agrees with other experts who spoke to the Deseret News: As a society, we probably don't want government deciding who gets what care when.
Families pressured, too
It's not just the government that struggles financially with end-of-life costs. Add in funeral and other costs and families can reel. Nationwide, more families are asking their county governments for help with low-cost or indigent burials, for instance, Soffe says. The average cost of a very basic funeral package is around $5,000. Cremations, less expensive than burial, are soaring.
Americans became planners, briefly, after Princess Diana died, Soffe says. The image of the little princes, William and Harry, walking behind their mother's casket left spectators heartsick and determined. If it could happen to her, it could happen to anyone. Estate, health care and funeral preplanning surged. Soffe says that, as usually happens as memories fade, it was not long-lived.
But making your own decisions, preplanning and communicating your wishes is still the best way to get what you want, on your terms, when circumstances are no longer in your control.
Terrill's family says he was a shooting star. He was among the youngest to graduate from his law school and so good at his job that his family figured he'd be a millionaire or a judge or both by 40. He died at age 36 after a boating accident. He left behind a wife, a son, a stack of medical bills and a house his family could not afford without his income.
His sister tells the story quietly, asking that his last name not be used to spare his folks hurt feelings. Nothing was further from his mind than death. He had health insurance that didn't cover as much as they'd thought, days that didn't stretch to cover all his plans, and a sense that nothing could harm him.
He was wrong.12 comments on this story
Editor's Note: Advance directive and end-of-life planning is an important and neglected topic. Families often shy away, and when crisis comes, relatives are left trying to guess what someone would have wanted. This week, Deseret Media Companies has joined a coalition to raise awareness about the issue, in conjunction with passage of SCR2, which asks Utahns to consider making their own decisions, appointing an agent and having those tricky conversations. The Deseret News and KSL TV will be running stories on the subject all week.
Click here to download advance care directive forms that can help you make decisions about the health care you would like to receive.
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