Health Care’s Broke: End of Life and Futile Care
(If you’re just joining us, here’s the introduction.)
People die.
I wish it wasn’t so.
Over the next 30 years, America is going to be seeing its population growing in the older age groups more than the younger ones. We will see a massive increase in our elderly population, who tend to be sicker, have more chronic diseases complicating their care, and have weaker immune systems, making them more likely to get sick with an infection in the first place. And as people will be living longer, they will have increased years for possible health expenditures, including medical interventions that may or may not be necessary.
At present, our health care system already appears to be unable to handle this load of patients. It will not improve with a higher quantity of patients. While we can certainly build more beds and more hospitals, we run into a more serious supply problem: doctors and nurses to staff them. (Taking Jack Wennberg’s Dartmouth Atlas of Health Care only complicated the issue further, showing that less health care = healther patients, that there are huge regional variations in care patterns with little change in outcomes by region, and that 30% of Medicare’s budget is spent on the last year of someone’s life.)
We also currently have a system where, due to legal fears (and the fact that Medicare will pay for it), doctors and hospitals end up providing ultimately futile care (ie: using health care resources that will not ever be able to meet the goals of care for a patient) due to either a) lack of an advance directive stating the patient’s wishes, b) family disagreement over the patient’s wishes, with threats of a lawsuit, and c) no standard by which to determine how to proceed in these situations. This is often ultimately bad for the patient, and is certainly not without harm: all interventions carry risk, and most cause at least some degree of pain or discomfort. Add in the oft-quoted Hospice statistic that while 90% of patients, when asked, want to die at home, 90% currently die out-of-home.
I’m certainly not ready to say that “at age 80, you get no more health care, and if you die, you die” as some have proposed. If you spend even a day in a hospital or medical clinic you see the broad, broad variation of what 80 means. 80 can be fully, 100% functional, with energy and vibrance of a 25 year-old; 80 can mean severe, advanced Alzheimer’s with 3 heart attacks and the inability to dress or feed oneself.
What we need is a better prognosticator. Some way to figure out when a person’s last year of life will be. (I worry this may never come; we humans are just too damn unique, complex, and confusing, and the awesome human spirit often beats the actuarial tables in the betting game.)
In one corner, we have the elderly patient. He doesn’t want, in general, to die in a hospial, connected to ICU tubes, fingers and tubes in every orifice. It is not a dignified death. In fact, in retrospect, when most people finally learn about and enroll in hospice, their reaction is “I wish we would have known about this sooner.” In the other corner, we have the health care system, which can’t figure out how to balance the needs of society. So what do we do? We do what any American would do: we offer choice.
Experiment: we offer people, say, 90 and above $30,000 and 100% free hospice care. In exchange, they agree to seek simple or comfort care only. See, those “last 6 months” costs or “last 1 year” costs are worth real, American dollars. And my guess is if you ask these people what they want with their final time, it’s not to spend it in a hospital or a doctor’s office. Maybe it’s to see Italy or France. Or to take a vacation with their great-grandchildren to Disneyworld. Or buy a fast car. Or invest it in the stock market. Who knows? I certainly don’t pretend to know what you want.
Again, this would not be a Draconian requirement, merely an option. If you’re going to be spending your hard-earned insurance dollars on something, perhaps you should get a choice–hospital food and IV sticks daily, or Paris? Sure, maybe you die a little sooner because you’re not seeing every doctor every month, but we certainly allow people to die sooner by smoking cigarettes or ride a bike without a helmet, right?
Even if this isn’t the option you choose, I strongly believe that Hospice should be free. Not only because it’s a simple, humane, dignified, cost-effective way to provide closure to people’s lives, but that it is what most people want at the end of life. It makes people comfortable and addresses their symptoms while giving them the needed medical follow-up to meet the goals they want for their short time remaining: often peace, closure, and time with the ones they love.
Second, I believe everyone with Medicare (or perhaps everyone with insurance, or everyone admitted to the hospital?) must have an advance directive. Even if it’s “I want everything done,” everyone must have something. Say we tell everyone they must have one by 2010, and if they have one by 2009, they get an extra $200 tax credit (first carrot, then stick). There are too many people who ignore the fact that they will die (see above: everyone does) and it causes problems for the entire society. (Remember, we’re all in this together.) From the family members it tears apart to the doctors and nurses who feel they are providing futile care, to your loved one who needs a hospital bed but cannot get one because the hospital is full. I believe we are truly disrespecting and taking the dignity from our loved ones by not knowing what they would want. We owe it to our parents, spouses, and loved ones to be able to represent them and their wishes correctly. We’ve now had ventilators and life support systems for what, 50 years? — but we still can’t seem to face up to the fact that many of our loved ones will spend time incapacitated at some point in their lives and we should know what to do when they are.
Third, we must recognize that often, family bickering about what a parent or other loved one “would have wanted” is not truly bickering, but more often a stage in the grief process — denial (“Mom is not going to die, do everything!”), anger (“How *dare* you say that mom is dying! Do everything!”) or bargaining (“Can we just try chemotherapy for two more weeks? Do everything!”). If we understand them from this perspective, it may be easier to resolve these issues.
Note: I toyed with the idea of “cost-sharing” for futile care, but I believe this to be a cruel way of enforcing policy–that “mom is going to die because I can’t afford to pay for her care.” I’d much rather setup a system that makes it “okay” for mom to die than “forcing” her to die. (See my upcoming post on Patient Autonomy.)
Finally, language affects the way we understand our world. I wholely support the efforts to change terms “do not resuscitate” to “allow natural death,” and “life support” to “artificial organ support,” as often our tools are merely preserving organs, not a patient’s life. As Reverend Chuck Meyer discusses the former terms:
An order to Allow Natural Death is meant to ensure that only comfort measures are provided. By using the AND, physicians and other medical professionals would be acknowledging that the person is dying and that everything that is being done for the patient–including the withdrawal of nutrition and hydration–will allow the dying process to occur as comfortably as possible. While a DNR patient in Intensive Care might be put on a ventilator, given artificial hydration, or have a feeding tube inserted, an AND patient would have all of those things withdrawn, discontinued, or not even started, since such treatments are painful and burdensome for the terminally ill. The AND would prevent this unintentional pain and simply Allow a Natural Death.
(Image Creative Commons licensed at Flickr.)
[...] publicly-discussed and probably most important topics for the next 30-plus years in health care: End of Life and Futile Care. To keep up with the series, they will all be listed in their own category together if you [...]
I love this series you are starting!
I think this is an ideal topic to start off with, too. I often wring my hands at the aging population and worry about it crashing our health care system. One aspect of it that worries me is long term care. Hospice at home sounds ideal. I am afraid of a burgeoning nursing home system that is already only able to offer a minimum of care at a high price.
I don’t know how many people live at home or with their adult children, and how that will change once there are more terminally ill or permanently disabled elderly.
I completely agree with your ideas about advanced directives. Not only should they be required for insurance (with ample latitude for personalization) but they should also be well discussed with whoever you give power of attorney too.
My father was very clear in his advanced directive. Do not resuscitate, no unnecessary procedures or interventions if he is terminal. But, he got dialysis hours before he died because his kidneys started failing. My mother said yes, my younger brother said yes, I said no and my older brother said no. It was clearly against dad’s wishes. We calmly agreed to let our mother make the decision, and she had power of attorney.
I agree – futile EOL care is bankrupting the systems. That one cranky ursine dude has an idea I wholeheartedly support – introduce *dramatic* cost-shares into the system when care has been declared futile. I support this idea wholeheartedly. When families realize that they’re choosing to keep granny propped up on a vent and tube feeding at the expense of, say, their *INHERITANCE* or *THE FAMILY HOME*, they’ll make better decisions. There’s only psychic suffering for families with loved ones on life support right now – make it hurt financially. I think Panda supports 100% cost shares; what I’d like to see is a steeply escalating curve. Say, 20% cost share on the first three days (same as Medicare Part B, but not covered by supplemental insurance), going to 100% within ten days. When care is deemed futile, the hospital is obligated to provide a good-faith estimate of the per-day/per procedure price of continuing care.
Several pieces need to be in place. First, advanced directives. I would support CMS *compelling* states to implement a POLST Paradigm program to extend the desires of Advanced Directive to a legal mandate for prehospital providers, which is where a *lot* of the trouble starts. People find LOL on the floor >36 hours and they call 911, who promptly do everything that the LOL may not want. POLST is critical to AD success, because it compels LTC, SNF, ALF, EMS and home health providers to act just as if they’d been given a direct physician order. There’s more information about POLST Paradigm at POLST.org, a service of Oregon Health and Sciences University.
Second, we’re going to need an entire business to determine futility. Once upon a time, before dialysis was widely available, there were dialysis committees for each center that weighed the “value” of putting a given patient on dialysis (which, de facto meant that somebody else wasn’t getting any). Ethics committees are close to the right structure, but something “bigger” is going to be required. This is going to require at least a mix of RN and MD-level providers (along with social workers, statistics experts and lay people) to spend time pronouncing people unworthy of further public spending, and I think that’s going to be a very, very hard role for someone to take on even part-time.
The most important step, to my mind, is to have better decision support tools available to family members. When I’ve been in a position to act as attorney-in-fact for loved ones, I feel like I’m operating in an information vacuum, and I’m a wonk about this stuff. Imagine how someone without the benefit of medical education and enough statistics to function as a physician is going to feel when even the most compassionate, dedicated, time-for-every-question physician tries to explain outcomes in a time of crisis. The biggest service CMS or NIA could provide is to come up with a series of easily understood (4th-grade-math and reading level) decision aids with big graphics and small words. Make laminated versions in the ten most common languages spoken by people who have loved ones that end up in ICUs, and maintain printed take-home copies and a website with a clever, short URL that people can reference later (or, better, before the fact, but I’m a realist). Deliver training to social workers, nurses *and doctors* in using the decision aids to explain prognosis and what is meant by “bad outcome”. Start with the condition that is reponsible for the most futile care dollars, and then work down as budget priorities allow. I am *thoroughly* convinced that the cost of even the most incredibly detailed research to support the development of these aids would be a fractional percent of the money we currently spend on this kind of care, and would not just save money, but would reduce human suffering.
As a real-world example, the MRC CRASH instrument is a good start for professionals, but could be made clearer for consumers. I know that if I find myself in the situation of a family member or close friend with traumatic brain injury, I’ll be looking to that calculator as a resource.
Eric
Excellent post covering some very tricky areas. I will be interested in seeing your future posts in this series.
You mention hospice but forgot to mention the wider role of palliative medicine specialists and palliative care teams in helping to determine the goals of care. Hospice is truly helpful once they are contacted but the problem is they are not contacted early or often enough to be of the most assistance, as you mention.
The most important part of the post, that many people will gloss over, is that we need better prognostication. There are many prognostic tools that are more individualized than actuarial tables. And everyone condemns doctors for their failure to prognosticate accurately or compassionately, but little research has been done in this area when compared to the skills of diagnosis or therapeutics.
How many doctors/residents/students have had more than one hour of any formal lecture on prognosis? Probably less than 1% and most of the ones who have probably got a lecture from me or one of my palliative care colleagues.
The future of efficient health care is prognostic research, all the research into diagnosis and therapies is just providing ways to spend more money. But we as a society have to be careful how we use prognostic information in a fair and just manned to the individual and the society, and that takes some difficult conversations.
I find your 30K and hospice idea novel, but I am not sure how much people would not hear any sort of coercion or arguments of “you can’t put a price on human life.” I would like to see more ethical, philosophical debates over that idea. that would be interesting from an academic standpoint.
Thanks again for the provocative post. I plan to link to this post from Pallimed sometime this week.
Oh yeah, and the ‘oft quoted hospice statistic’ is more around 75% of people die in facilities in the US. See the NHPCO website for more info.
Great comments, everyone. I’ve heard other people talk about the elderly being “greedy” on other blogs, and it really bothers me: it’s physicians that recommend all the aggressive treatment much more often than it’s elderly patients.
@Eric: great comments. I disagree on cost-sharing before we’ve at least tried other measures. I think a great deal of the futile care stuff would be better if we gave people options and required ADs. I’ll talk about cost-sharing and killing mom in a future post, thanks for bringing it up. I’ll have to check out POLST, I don’t know anything about it. And I totally agree we need better decision support stuff, at basic reading levels.
@Christian: thanks for the great follow-up–I agree, palliative care could be its whole own post, and so could prognosis. I’d love to hear more from you about what prognostic tools and research are out there.
You can find some prognosis tools focusing on the less then 6 months range at http://prognosis.pallimed.org I occasionally update that when a clinically useful an applicable tool is made available. There are many more out there, but have pretty weak validation support so not yet ready for prime time.
For anyone remotely interested in prognosis, I highly recommend Nicholas Christakis’ Death Foretold. It really does a nice job focusing on the communication AND formulation of prognosis. It is around 200 pages and a pretty quick read for anyone who has read more than a few journal articles.
BTW does your comments support HTML? I would try but would be afraid it would come out all funny looking.
They sure do!
Graham:
I’ve posted about POLST at my shabby caravansary of craptasticness:
Please Observe Lemurs Saucily Tangoing
I’m off for a week in paradise to deal with my incredibly sick mom – will this “Killing Mom” thing be a how-to guide? I think I have some solid ideas, but I wouldn’t mind professional advice.
Christian – wow, I’m a Pallimed fan, and hadn’t even seen those tools. Most excellent.
E
I would like the author to address the necessary legal immunity by statute. Without it, everyone gets sued for this proposal.
@Supremacy: Sorry, I have no background in legalities, but I think it’s pretty obvious a number of statutes would need to be altered/added.
[...] A really, super fantastic post on ethics, rationing, medical resources, and futility by UCSF’s hospitalist blogger. Illustrates my feelings on the subject very well and shows that we really need a solution. [...]
I agree with the comments on communication with family. My mother died recently after a long illness. I have a master’s with a science background and it was difficult figuring out who was in charge at the hospital and what they said to my father (not a science person) really meant in terms of her condition and prognosis. Hospitals could really, really help patients and families do end of life care better (and probably cheaper) if they communicated clearly. As a follow up, I am curious about your opinions on HIPAA. It seems ironic that it is often necessary after a loved one no longer has the faculties left to give you access to their records.
I do have some problems with the A.N.D. order or the AND order or the A-N-D order, because in the world of scribbly handwriting, it could be easily confused as just a simple conjunction. AND what? Imagine an order that looks like this:
—————
D/C cardizem drip
D/C telemetry
Scopolamine patch Q72h prn secretions
AND
——————–
I think “allow natural death” is a great way to communicate DNR orders with patients and families, but for clear orders it doesn’t pass muster. POLST is the way of the future I think as per Eric’s comments.
Also, when you mention ‘free’ hospice care, I would just like to clarify that hospice care is not ‘free’, but taxpayer subsidized through the Medicare Hospice Benefit (or through commercial insurance). SO a more apt description would be “no direct cost” or “no out of pocket expense.” We hospice folks like to make a decent living. :-)
Graham:
I also commend you on presenting this subject. It was my understanding that Medicare required a patient to either indicate that he/she had an advanced directive or to complete the forms when admitted. Maybe that has changed. The POLST has really been developed by the physicians at OHSU which is our medical school.
I believe that a great deal of the “futile end of life care,” is pushed by the physicians. What their reasoning is difficult to know, accept there is a fear of litigation and maybe because there are “procedures” they know how to
do and they get paid for doing them.
I am beginning to look at some of these issues from a different view point because I am past seventy and prior to 2007 really had not been a heavy user of the Medicare system. Last year I had two orthopedic procedure, had radiation therapy for prostate cancer, and my wife had a hysterectomy. None of these procedure fall into the category of “futile care” but we really cost Medicare some money. Both my wife and I have advance directives that are very explicit in what we want in the “end of life” situation. In 2003, when my sister was dying of breast cancer, I was unaware of an advanced directive so as executor of her estate, I had to make the decision, in conjunction with the hospitalist, and my younger sister, to stop “heroic measures” and just give her comfort care.
From experience with my sister and several friends, I can’t extoll Hospice care enough. I commend Christian Sinclair for being involved in it.
PS. I should restate one sentence: “What their reasoning is, is difficult to know, accept there is the fear of litigation, and maybe because there are procedures they know how to do and they think the procedures might help, and they know they will get paid.”
Concerning the posts about legalities:
I have a series of lengthy articles reviewing the laws across the United States. While a majority of state health care decisions acts purport to give health care providers a “safe harbor” to refuse surrogate requests for treatment the provider deems professionally inappropriate, almost all of those safe harbors are actually ineffective because they are too vague. Only Texas has a clear, concrete, predictable safe harbor so that providers know what they need to do to be protected from civil, criminal, and disciplinary sanctions.
http://www.thaddeuspope.com/images/Pope_-_Tenn._L._Rev._pre-proof.pdf
http://www.thaddeuspope.com/images/Pope_Waldman_-_OSJDR_2007_prepub.pdf
John T,
Thanks for the recognition of hospice staff. You are right that Medicare requires something about advanced directives on admission. They require that someone asks you if you have one or are interested in them. This essentially devolves into a check box, that someone in ‘intake’ asks you, usually without much follow up.
One thing I would like to see is that at least a power of attorney by completed before initiating dialysis, chemotherapy, surgery or any other ‘major’ therapeutic endeavor if the patient is capable. If they choose not to complete a power of attorney or living will then someone should be available to meet with them to explore their reasoning. If a little education can overcome the barrier then great, if not the patient does not have to complete one. And like Graham said, if they want to fill out a living will that says they would never want anything withheld they are welcome to do that in a living will as well. Although I would not necessarily encourage that because modern technologies can get people ‘stuck’ in some very precarious situations that have no good answers.
Thaddeus,
Thanks for the links. OT: Why do law review books have such small pages with such little text on them? I never understood that. It always ends up wasting so many pieces of paper just to reprint one of those. Guess I should read it online.
[...] He’s certainly headed in that direction, especially on perusing one of his latest articles on futile care where he correctly identifies the disassociation between cost and effectiveness of much of what we [...]