Laura Seitz, Deseret News
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.
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