By John Ballard
Advance Directives -- Two Case Studies (September 7) pointed to a couple of examples illustrating the importance of final directives, but didn't explain in detail what that meant. This post is a followup explaining what the term "final directives" means.
Advance Directives 101 � Do Not Call 911 by Dr. Rick Peters is the second of what promises to be an informative series of posts going to the core of health care inflation, end of life care. The reader should understand that Dr. Peters has given up on any meaningful legislative remedy and seems to be turning his attention away from politics and back to the challenges of medicine. (Personally, I still hope that something productive will happen, but I am fully sympathetic with anyone who, as he says, throws in the towel.)
In an earlier post Dr. Peters spilled out a daily dose of challenges that make politics look like a walk in the park.
...I crawled out of the car and went in to go to sleep with it all blaring in my head. My patient with gallstones diagnosed a month ago now with elevated LFTs and awaiting an ultrasound wanting to know if she could just go out a get a carne asada burrito and then come back for the test. The Alzheimer�s patient who could not walk or feed himself or recognize anyone who fell out of bed and broke his hip and needed a hip replacement not only because he was full code, but because it is the only humane thing to do. The health information systems we struggle with feigning silence when we know they are archaic and are killing our efficiency. The practice variation and flaunting of evidence every one of us is guilty of as physicians. The elderly couple with the husband with pneumonia who has to be admitted to the ICU with the wife pleading with us that the hospital copay will ruin them this month. The healthy forty year old female executive demanding a bone density test because she �paid for her insurance.� The 340 pound 53 year old diabetic back again with an ischemic leg status post three resuscitations this year alone and over $125,000 in fully covered medical expenses now headed towards $175, 000.
I've complained in the past about how unforgiving the food business is, but when I read stuff like this I'm more than happy to stick to a hot kitchen and let medical professionals earn as much as the system will bear. Who can blame doctors when patient behaviors drive so many medical problems?
And no one can fault the doctor who counsels his patients about the importance of their end-of-life medical care?
From a nuts + bolts perspective reform is not going to begin to solve this problem. The facts are pretty clear: we spend too many precious health care resources unnecessarily late in life; we decide far to late what we do and do not want modern medicine to do for us; and, far too few of us get to die with the peace and dignity everyone deserves. The solution lies not in the health care system, nor does the blame. The solution and the blame lies with each of us and until we are willing and able to rationally decide what we do and do not want modern medicine to do for us, someone else will be forced to. Those decisions, all of them well intended, will inevitably be made under duress. Death does not need to, and should not be that way. Let�s not confuse this with �rights� or a �right to die.� The concept that we have a �right� to something just muddies the whole health care debate. The issue is respect. How do we respect the dignity of someone who is facing death with the kindness, gentleness, and support they deserve?
Well said. Occasionally I have spoken these words, either to someone directly or a family member: You face two choices. Make decisions yourself or wait until someone else makes them on your behalf.
This easy to grasp idea applies to all kinds of aging situations. And the sequence of those decisions is progressive. Facing the empty nest is the easy part. Making the adjustments moving forward is tougher. It's not easy to downsize from a big house, or move into assisted living when mobility issues come along, or stop driving, or allow yourself to go to a skilled nursing facility for safety, security and personal care. Bette Davis said it well: Getting old isn't for sissies.
Popular magazines and books have done a good job of romanticizing the aging process and the media have gone along. I recall that even after Ellen Corby aka "Grandma Esther" Walton had a stroke she kept working her role in The Waltons. And the Golden Girls will have reruns as long as M.A.S.H. It's hard enough to address aging in a general way. But when it comes to the real end of life, death itself, the issue becomes touchy.
The nuts + bolts problem, however, lies in whether or not we make those decisions and whether or not other people, when we are incapacitated, adhere to those decisions. Ezekiel Emanuel, demonized in the �death panel� hysteria, was the senior author on a very important paper in The New England Journal of Medicine that showed that patients would refuse �life-sustaining treatments in 71 percent of their responses to options in the four scenarios (coma with chance of recovery, 57 percent; persistent vegetative state, 85 percent; dementia, 79 percent; and dementia with a terminal illness, 87 percent),� but that less than 18% of respondents actually had advance directives. Even more disappointing is that Hardin and Yusufaly point out in the Archives of Internal Medicine that 65% of decisions by physicians are not consistent with the patients advance directive. The sample sizes are small and the cases are hypothetical, but it is consistent with what we see in day-to-day medical practice. Then, Ditto, et. al. point out, also in the Archives of Internal Medicine, that advance directives had essentially no effect on the accuracy of decisions by designated surrogates (for example those friends or family we designate as our health care Durable Power of Attorney).
A commenter at Dr. Peters' post provided a link to Aging With Dignity, a site dedicated to helping people make their final plans.One of their resources they call "Five Wishes."
Wish 1: The Person I Want to Make Health Care Decisions for Me When I Can't
Wish 2: The Kind of Medical Treatment I Want or Don�t Want
Wish 3: How Comfortable I Want to Be
Wish 4: How I Want People to Treat Me
Wish 5: What I Want My Loved Ones to Know
A multitude of resources is now available and should be part of everyone's estate and final planning. Even people who have so little to leave behind that a will may not be needed can take the time and attention it takes to put instructions into writing for the time that they may no longer be able to do so for themselves.
The Multi-million Dollar Conversation
End of Life issues lie at the heart of the health care debate. Thanks to the miracles of modern science, human lifespans and the benefits of good health are better now than at any time in history. The United States, unfortunately, does not reflect these trends for a variety of reasons and as nearly everyone must know by now we pay more and get worse outcomes than much of the world.
A recent article (March 9) at Harvard Science is among reams of such reports available for anyone seeking answers to why medical care costs so much in America.
Few physicians are eager to discuss end-of-life care with their patients. Yet such conversations may result in better quality of life for patients and could lower national health care expenditures for cancer care alone by tens of millions of dollars each year, according to a study led by Harvard researchers at Dana-Farber Cancer Institute.
As reported today in the Archives of Internal Medicine, investigators interviewed 603 advanced-cancer patients about whether they had end-of-life (EOL) conversations with their physicians. The researchers calculated the final week health care costs of patients who reported such conversations and compared them with the costs incurred by patients who did not.
They found that patients who reported having an EOL conversation had an estimated average of $1,876 in health care expenses during their final week of life, compared with $2,917 for those who didn't, a difference of $1,041, or 36 percent. Higher costs � typically the result of more intensive, life-prolonging care � were also associated with a worse quality of death during patients' final week. In addition, patients typically did not live longer if they received intensive care.
"We refer to the end-of-life discussion as the multimillion-dollar conversation because it is associated with shifting costs away from expensive, burdensome, noncurative care, like being on a ventilator in an intensive care unit, to less costly comfort care provided at home or in hospice, which most patients and their families say they would prefer," said the study's senior author, Holly Prigerson, of Dana-Farber, and an associate professor of psychiatry at Harvard Medical School.
"As the nation looks to ways to improve patient care and reduce costs of health care, end-of-life conversations should be considered,� Prigerson said. �Policies that promote increased communication, such as incentives for end-of-life conversations, may be cost-effective ways to both improve care and reduce some of the rising health care expenditures."
Previous studies have shown that a disproportionate share of health care spending in the United States is incurred at the end of life and that patients who speak with their physicians about end-of-life preferences have fewer life-sustaining procedures and lower rates of intensive care admission.
The study by Prigerson and her colleagues suggests a direct link between communications at the end of life with lower health care costs and better quality of life for patients with advanced cancers.
The paper is part of a multi-institutional study called Coping With Cancer. Funded by the National Institute of Mental Health and the National Cancer Institute, the study tracks the health and psychological state of 627 patients nationwide with advanced cancer.
Although the study doesn't purport to show a cause-and-effect relationship between EOL conversations and lower medical costs, it does suggest a strategy for reducing such costs and for improving patients' quality of life as death approaches, noted Prigerson, who is also on faculty at Brigham and Women's Hospital (BWH). If the national proportion of patients reporting EOL discussions was increased to 50 percent, the annual cost savings could be more than $76 million, researchers estimated, based on the annual number of U.S. cancer deaths.
End of life discussions and final directives should become as much a part of our vocabulary as discussions of lifestyle, banking, employment, or any other serious topics. (I came across a grim one-liner a few months ago: Why do coffins have nails? To keep out the oncologists.) There is no shortage of information available but the job of learning is up to each of us as individuals.
My mother died in January after a mercifully quick onset of cancer ending her ninety-two years of otherwise healthy life. She and Dad had made their wills and purchased cemetary lots long ago, and she pre-paid funeral expenses and decided on a casket as well.
I thought all was taken care of but was surprised to learn when the time came that my sister and I had to decide among five or six different hospice providers. Most people have no idea what hospice is and are even more clueless that Medicare pays up to four thousand dollars toward to cost of that very important end-of-life expense, now gently referred to as "palliative care."
The post title refers to DNR's and Living Wills which I will not try to simplify in a blog post. My purpose here is to raise awareness and prick curiosity on the part of readers. If only a small number of my peers would take the time and effort it takes to do a little homework on this one subject and follow through, I think the "costs" arguments about health care would vanish in a decade. When people look seriously at their mortality, they tend to pay better attention to what happens until the Angel of Death comes.
(Uh, did I mention that eating right and taking better care of ourselves might also have a payback in lower medical bills? And yes, that might include not taking al the expensive medicines we see advertised on television.)
Here's a link to a Rand White Paper (pdf 22 pages) to get you going...
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