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End of life care: More or less of it?
Many patients spend their last few days and weeks in hospitals or nursing homes -- even though, when asked, they say they'd prefer to die at home.
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TEXT OF STORY
Kai Ryssdal: We're going to take some time now on a subject most of us don't want to think about, much less talk about: Death and the process of dying. People 85 and older are the fastest growing part of the population. They're also the sickest. End-of-life care is one reason why we're spending more on health care, as a country, than we ever have.
In the first of two stories about the changing economics of the way we die, Marketplace's Caitlan Carroll explains how we got here.
Caitlan Carroll: First a little background: I love the movie "Cocoon." I first saw it 21 years ago, when I was 10. It's about a group of senior citizens who find alien eggs in a swimming pool. And the pool turns into a kind of fountain of youth.
"Cocoon" audio: What's important is that when we get where we're going, we'll never be sick, we won't get any older and we won't ever die.
When I saw the movie, someone in my family was dying. I wanted a supernatural force to intervene. I was a child, but many people take that kind of magical thinking with them into adulthood.
Howard Gleckman: It was once said that Americans believed that death was optional.
That's Howard Gleckman. He's a fellow at the Urban Institute and the author of "Caring for Our Parents."
Gleckman: There may be such a thing as American exceptionalism, but death isn't optional.
Even if it feels that way sometimes. Respirators, pacemakers and dialysis machines can keep our organs functioning when they no longer work so well on their own. New drugs and treatments stave off the effects of chronic diseases like cancer and AIDS for years. As a country, we've invested billions in the promise of life-saving technology.
Gleckman: In the mindset of the modern American system, the right thing is more treatment and more stuff, more machines, more drugs.
At least a quarter of all Medicare money is spent on people in the last year of life, mostly in the last month. Much of this spending does help people live longer. But for many, it means being tethered to machines, taking experimental drugs and undergoing painful treatments.
Henry Aaron is a health care economist at the Brookings Institution.
Henry Aaron: At a certain point, layering on additional care -- as many people have put it -- extends dying but does not really extend life.
The process can also send families into financial ruin. And it's not the way most patients say they want to die. According to the Dartmouth Atlas Project, which tracks health care trends, more than 80 percent of patients say they don't want to be hospitalized or given intensive care during the last phase of their lives.
So why are so many getting it? It's simple and complicated. No one wants to give up. Not families. Not patients or doctors. And then there's the health care system itself.
Don Schumacher: When you look at the health care system as a whole, there are competing streams of revenue that could keep patients away from facing their dying. Everybody has, if you will, a dog in the end-of-life care fight.
That's Don Schumacher. He heads the National Hospice and Palliative Care Organization. It concentrates on helping people with chronic and terminal disease stay comfortable, rather than trying to cure what cannot be cured. What Schumacher means is that the health care system is built on incentives that are tied to more care.
Schumacher: You have physicians wanting to continue to treat, hospitals -- and most of this is motivated by the best of all intentions in that they want to give people what it is they want, which is the hope that they can survive their illness.
But he says when it becomes clear that there is little hope for recovery, doctors need to have frank talks with patients and their families about other options. A provision in the health care reform bill would have paid doctors to talk to patients about living wills and end-of-life care. It collapsed in a national fit of hysteria over death panels.
Health care rally: Woman: They would rather send you a $50 check for a blue pill, "end-of-life" pill than pay the necessary medical expenses.
Man: Obama care is euthanasia. It's rationing.
Rosemary Gibson led the Robert Wood Johnson Foundation's program to improve end-of-life care. She says in addition to not getting compensated for this kind of care, many doctors aren't trained to talk about death.
Rosemary Gibson: In fact, in the mid 1990s, if you picked up a medical textbook or a nursing textbook, you would never know that a patient ever died.
Howard Gleckman says he learned his father was dying of congestive heart failure, during a random conversation with his father's doctor in a hospital hallway. Gleckman took his father home and stopped looking for more specialists and different treatments. He decided...
Gleckman: That the best use of my time was just sitting with him and helping him remember. That was very gratifying. It was very helpful to me, it was very helpful to my mother, and I think, it was probably very helpful to him as well.
That decision bought them all some time to deal with the inevitable.
In Los Angeles, I'm Caitlan Carroll for Marketplace.
Ryssdal: Caitlan's story was produced as part of a California Endowment Health Journalism Fellowship, a program of The Annenberg School for Communication & Journalism at USC. Tomorrow, how end-of-life care is changing.
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Thanks for this story. It seems that we, as a society, have grossly disproportionate views of the cost we're willing to pay to keep living. Maybe an appropriate philosophical question to begin with is, what is "living"? And here's another question: is it even worth living past a certain age? I have met some 80 year-olds who seem to have all their faculties intact and are full of energy, but the majority are dealing with various ailments of both mind and body that make life very difficult.
Thank you for this story. I wanted to share with you a recent experience. It’s a bit long, but I hope you read this all the way through…
My dad had a very sudden heart attack while visiting me and my family here in the US (from Moscow, Russia) last December. He spent almost two weeks in the ICU before he passed away on December 29, 2009. It was a tremendous shock to all of us. He had had physicals every year including blood tests (to check his cholesterol) and cardiograms. Every year he would take his results to his cardiologist, and she never even mentioned that he might have any heart issues.
When we came to Moscow this summer, my mom took his test results to a different cardiologist (my dad's was on vacation), and asked him if he thought that his cardiogram and blood test results were normal or if he had issues (she didn't tell him my dad was gone). This doctor immediately told my mom that my dad needed an immediate ultrasound of the heart and that all his test results indicated that he was about to have a massive heart attack. He even asked my mom if he'd already had one, but she just thanked him and left his office.
We weren't completely shocked, because we know that the situation in Russia is such that the doctors only treat you if you complain about something. My dad NEVER complained about anything. However, I immediately wanted to sue! When we spoke to my aunt, who is a doctor in the Russian City of Perm, she told us that it’s useless, and that the only thing we could do was to write a complaint to the clinic, where my dad was treated, and the most that would happen to his cardiologist, would be that her bonus might be taken away (and by the way, they don’t get bonuses!).
This is the kind of end-of-life care that the Russians get these days. The goal of Russian medicine is to make sure that people don’t get to an old age at all!
We just found out about all this last Friday, and I really want to be able to do something about it, if not directly, then at least by getting this story out.
Remember the story from last fall, when there was an explosion due to the fireworks in a nightclub in the Russian City of Perm? Do you know about the aftermath? Because my aunt works there at the hospital, where most of the victims (around 150 of them) were taken to, I can tell you exactly what happened. All of them died, not because their injuries weren’t curable, but because the hospital didn’t have any supplies! Not even bandages! A commission was organized to study the situation in the city, and the results were so bad, that even the doctors working in the biggest hospital in the area, did not learn the results of the study.
I believe that what my dad’s cardiologist did/didn’t do was CRIMINAL, and that something MUST be done to hold this doctor and even the system accountable for this complete carelessness. Because of this, we lost our dad, and people die every day because of this! And I hope to find a way to expose the Russian medical system and help improve the situation.
The only area, where Russian medicine is thriving is in pediatrics, which is apparently much better than in the US (according to Russian pediatricians that have had experiences in the US).
I have been a hospice worker for almost the last decade. Your story was beautiful and touching. Death and dying, like the daily lives we live are sacred. People should be allowed choices and dignity at the end of life! Thank you for that aspect of you story!!
HOWEVER, your story chronicled the non-profit program of a palliative care and hospice program! How about delving into the many more for-profit hospices? In the many states that allow
non-affiliated for profit hospices there now have become chains of for-profit hospices throughout the United States. Some of these for-profit hospice companies are run by the hospitality industry, some by large for-profit health care conglomerates, one is a subsidiary of Roto Rooter. While patient care is always talked about first and foremost, the bottom line for these is profits, and usually big profits; patient care at that level is usually secondary! In the area of Houston, Texas alone there are some 50+ hospices and only 3 of them are non-profit hospices. (Only a handful of these hospices, for profit or non profit, have in-patient units.) Many times hospice is therefore used as a way for hospitals to discharge patients as way to dump these patients and the hospices are all too willing to jump at the prospect of admitting a new patient, whether the patient and/or family has expressed hospice goals/end of life goals or not.
How can an 88 year old patient with terminal Lung Cancer, who is bed bound and has dementia, and who can no longer speak, no longer eat, nor recognize anyone specifically, be allowed to have her gangrenous foot be amputated? The foot was not causing pain due to proper use of pain medication. The answer: the relative who had the Medical Power of Attorney, elected to have that surgery done, because Medicare allowed it and would pay for it, because the gangrenous foot had nothing to do with the end of life lung cancer diagnosis. The hospice went along with it. The patient lived in the same condition as she had previously, only now more heavily medicated. She lived for another three weeks, before dying. This is just one example, there are many other examples that include: the failure to stop dialysis when a patient is in semi-coma to coma like state because having kidney problems was not the terminal diagnosis; or putting a feeding tube into a patient because the terminal diagnosis was unrelated to the inability of the 80+ year old patient to swallow any more...
I am one of the biggest proponents of comfort care, but too many hospice companies use the excuse of comfort care to allow aggressive treatment in order to keep that patient on their service!
Since Medicare, and to a lesser extent Medicaid, are the main ways of reimbursement, then the hospices live and die by these rules; many which are arbitrary and left open to the interpretations of the Medicare official who audits their programs. Often too much time is therefore spent trying to guess what Medicare/Medicaid wants than is devoted to end of life care and end of life issues.
Next briefly let me talk about the State of Texas (I believe Texas does not stand alone in these practices). In this great state of Texas, many of the physicians that refer to hospices are often affiliated with both nursing homes and hospices, some as referring physicians with an affiliation to either the nursing home or hospice or both and some as medical directors of either or both nursing homes and the hospice. It is legal for physicians to own or have financial interests in nursing homes in Texas. It is not legal, to my understanding, for physicians to own or have financial interests in hospices. It is well known that a few physicians here have invested in specific hospices through their family or relatives. Some physicians locally will refuse to refer a patient to a hospice unless it is exclusively to the hospice that he/she is affiliated with. Other physicians indeed give patients some modicum of choice. There indeed are many wonderful, caring physicians who believe in palliative medicine and hospice care that make referrals to hospices with only the patients' best interests at heart. However the referrals to hospices in the larger urban areas here are often made not based on which hospice will provide the best care or even which hospice the patient/family prefers, BUT instead on which hospice (and at times, which nursing home) the referring physician is affiliated with!
Finally let me CONCLUDE, despite all the negative aspects that I have just listed, the line hospice workers that I have known and worked with: nurses, home health aides,secretaries/office managers, chaplains, social workers, mid-level local administrators, volunteer coordinators, bereavement coordinators, volunteers, and doctors DO make a positive difference to the patients and families that we serve. We help patients through the end life process providing care, comfort, dignity, compassion, and accept both patient and family/friends with their uncertainties, fears, and understandings...
To hospitals, end of life care equals Medicare fraud at its finest.
My 85-year-old mother was diagnosed with renal failure after being taken to the emergency room, and dialysis was ordered to begin immediately. She and my father decided against it (and had to fight to do so) and she entered hospice instead. Yet nearly a year after her death my dad was STILL receiving hospital bills for services that were supposedly rendered to her...including hundreds of dollars for a neurological evaluation that was dated after she'd entered hospice! I'm sure most grieving spouses simply sign off on these bills without double-checking as my father did.
Thanks for your excellent story on the importance of end-of-life care. I'm the bereavement coordinator at Mary Washington Hospice in Fredericksburg, VA, and an author/speaker on the subject of grief. I would like to point out that an integral component of hospice care is bereavement support to patients and families both before and after a death. In fact, many hospices like ours extend bereavement care to families for thirteen months or longer after a death. Bereavement support includes telephone outreach, grief counseling, home visits, workshops, informative mailings and newsletters, all sorts of support groups, as well as annual services of remembrance. Typically, in hospices across the country, all bereavement support, including counseling services, are free to hospice families. Let's not forget this extraoordinary aspect of hospice care!
Robert Zucker, Author, The Journey Through Grief and Loss: Helping Yourself and Your Child When Grief Is Shared (St. Martin's Press, 2009)
As Director of Bioethics and Public Policy at The National Catholic Bioethics Center, and as one of the founding members of the CT Coalition to Improve End-of-Life Care, initiated with RW Johnson funding (Although not speaking for that Coalition, but for The National Catholic Bioethics Center) the real need is for education of health care providers and families. Good discussions need to occur when folks are competent about delegating to surrogates the ability to make decisions, based upon the benefit of a treatment in relationship to the burden of the treatment. Also, there are factual points that may need clarifying. The over 85 year old’s economic cost at end of life is not the problem. In fact, overall, the elderly comprise 12.6% of the population and federal expenditures on the elderly are equitable (13%). It is between 65-85 years of age where the cost goes from $12,000 to $24,000 in the last year of life. But interestingly these amounts have remained stable over the last 40 years, and are equal to Europe’s except for Switzerland. The real problem is the lack of preparing health care workers and family members for the discussions, to assuage guilt (and law suits) that drive decisions. Another real issue is the percentage of elderly (not the actual number) in the US. That percentage makes Social Security and Medicare unsustainable. The birth rate in this Country has dropped 40% in the last 50 years. That is a significant issue (the percentage of elderly; not the actual number). As a society we can find a better way.
Thank you Marketplace for having the courage and foresight to address death and dying in our culture and to challenge existing norms in health care. In the midst of fears and conflicting incentives, the individual person's goals and wishes for care are often drowned out, misunderstood, or cannot physically be communicated. I applaud you for debunking the myth of death panels. End of life decision-making is really about giving persons and their caregivers a voice and empowerment to make informed choices base on their goals and values.
Thank you for this enlightening and important story on end-of-life care. The issues you covered are so vital to each of us, yet are rarely honestly discussed. Thank you for the insightful conversation, education, excellent resources and great work. Please, continue and expand your coverage on this important subject. End-of-Life issues impact each of us. We need to do better. Your brave, honest and wonderful work is deeply appreciated and helps so many of us. MANY THANKS.
Thank you for highlighting an issue that is growing in importance. End-of-life care needs serious consideration and yet many Americans believe that talking about it is for someone else. Everyone over the age of 18 should have a conversation with loved ones about their preferences. But the economics of end-of-life care is even more taboo. Should people be able to demand care that will do no actual good but will be very costly? Physicians sometimes yield to patient or family demands only to avoid a lawsuit. The real financial loss is rarely felt by those that incur the costs.
The International Council of Nurses' definition of nursing includes "the care of ill, disabled and dying people." Caring for dying people is a fundamental part of the profession of nursing. Hospice has been in the US for 40 years thanks to Florence Wald, who was Dean of the Yale School of Nursing. In contrast, the definition of medicine is to diagnose and treat disease--death and dying are largely absent from medical education and training. As is true with so many issues plaguing our health care system, nursing has been at the forefront of the solution for much longer than most people realize. Please make sure to consult nurses as experts in the health care issue that you cover!!
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