End-of-life care is expensive and too often fails to improve the quality of life.
Should your 82-year-old dad, who has been declining after a stroke, get hip surgery after a fall? Would your 43-year-old sister, fighting late-stage cancer, benefit from an experimental drug that could have serious side effects?
These are wrenching decisions. And while no one wants to think about money at such times, they are also expensive ones -- for families and for the country.
One out of every four Medicare dollars, more than $125 billion, is spent on services for the 5% of beneficiaries in their last year of life. Yet even with Medicare or private insurance, you're likely to face a big bill: A recent Mount Sinai School of Medicine study found that out-of-pocket expenses for Medicare recipients during the five years before their death averaged about $39,000 for individuals, $51,000 for couples, and up to $66,000 for people with long-term illnesses like Alzheimer's.
For more than 40% of these households, the bills exceeded their financial assets. Says study co-author Amy Kelley, an assistant professor of geriatrics: "Many people are shocked by the high out-of-pocket health care costs near the end of life."
If spending all that money helps ensure that the people you love get the best care at the end of their life, you probably think the price is worth it, no matter how high. Yet that's often not the case.
With the process frequently driven by the medical system's focus on performing aggressive interventions at any cost -- and the reluctance of families to talk about death -- many people who are dying do not get the care they want.
Worse, they often suffer through unnecessary, even harmful treatments. Says Ira Byock, director of palliative medicine at Dartmouth-Hitchcock Medical Center and author of "The Best Care Possible": "When patients have a terminal illness, at some point more disease treatment does not equal better care."
You and your family don't have to accept the status quo. There are steps you can take so you know what your relative really wants -- and family members know what you want -- and to ensure that doctors follow suit. There is research to inform you about which treatments help and which cause more harm than good. And there are services you can rely on -- increasingly available but vastly underutilized -- to improve quality of life in the final weeks or months of life.
Last month, Money magazine ran Part One of its three-part series on the financial challenges families face when a loved one is dying. The first part, "The high cost of saying goodbye," tackled funeral costs and the tactics some in the funeral industry use to manipulate you into overspending. The final installment, "Looking beyond," profiles a man who has Lou Gehrig's disease and is planning for his wife's financial future without him.
In this story, the second in Money's series, you'll see how frank talk, planning, and the right information about costs and options can help make the end of life as comfortable and comforting as possible. Here is what you need to know.
DENIAL IS THE ENEMY
People do not like to talk about death -- to prepare for its inevitability when they're healthy or to acknowledge its proximity when a family member is terminally ill. Consider: Six out of 10 people say they don't want their family burdened by end-of-life decisions, according to a recent California Healthcare Foundation survey, but nearly as many (56%) have not communicated their preferences.
Here's the problem with denial: By not telling your family the kind of care you want, you give up decision-making power to others -- the hospital, doctors, or a relative who may not know or share your preferences.
Even though most Americans say they would prefer to die at home, for instance, only 24% of those over 65 do so, according to 2009 federal data. The rest spend their last days in hospitals or nursing homes.
Ending up in the hospital often means aggressive, high-cost treatment at the expense of quality of life. A 2010 Dartmouth study of elderly cancer patients nearing death found that 9% had a breathing tube or other life-prolonging procedure in the last month, and at most academic medical centers, more than 40% of the patients saw 10 or more doctors in the last six months of their lives.
"If hospitals have the resources, they are always used," says Dartmouth professor David Goodman.
Even when the person who is dying has made his wishes known, they may be ignored, or his medical team may not be aware of them. A 2010 study in the Journal of Palliative Medicine found that only 15% to 22% of seriously ill elderly patients had their preferences in their medical records.
Studies by the Agency for Healthcare Research and Quality show that 65% to 76% of doctors whose patients had documents outlining end-of-life wishes weren't aware they existed.
What to do
Stop pussyfooting. The best time for family members to share their thoughts about the kind of care and intervention they want at the end of their life is before there's a crisis. If that conversation doesn't happen before a person becomes seriously ill, waiting is no longer an option.
Among the questions to ask: What kind of life-sustaining treatment -- CPR, feeding tube, ventilator -- do you want, if any? Where do you want to be cared for? When you think about the last phase of your life, what's most important to you? (For more guidance, go to TheConversationProject.org.)
Make the choices binding. Only one-third of Americans have advance directives, such as a living will, which lays out preferences for life-sustaining treatment, and a health care proxy, which appoints a person to make medical decisions for you if you cannot.
"Choosing a health care proxy is even more important than a living will, since that person will be interpreting your wishes and making sure they're carried out," says Charles Sabatino, director of the American Bar Association's Commission on Law and Aging.
If you haven't prepared these documents, get on it now. At Caringinfo.org, you can get state-specific advance-directive forms that can be completed without a lawyer or prepared by one as part of estate planning.
Get doctor's orders. Advance directives may not be enough to ensure your relative's wishes are followed. Take an extra step and see if your state is among the 15 (including California and New York) that have adopted a POLST form, or Physician Orders for Life Sustaining Treatment, which is designed to be carried by patients or their caregivers from hospital to home.
Since it is signed by a doctor, it often holds more weight than a living will and is recognized by all medical professionals, including EMTs. (Get more info at ohsu.edu/polst.) If your area hasn't adopted it, ask the doctor about putting a do-not-resuscitate order in place.
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