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Zack Cooper

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The Case for End-of-Life Care Gets Stronger

Posted: 08/24/10 03:31 PM ET

It doesn't get any tougher than this: discussions revolving around end of life care, treating patients with a terminal illness with dignity, and the costs associated with intensive medical treatments are staggeringly difficult. However, every now and then, an article is published that fundamentally changes the status quo. A recent piece by Jennifer Temel and colleagues, appearing in the August 18th edition of the New England Journal of Medicine, is just that kind of paper.

The article explores the impact of introducing, in addition to traditional cancer treatment, palliative care in the early stages after a patient is diagnosed with terminal lung cancer. The authors' main finding is that when palliative care is introduced early, it can lead to significant improvements in quality of life and mood, reduce the rate of depression and even extend patients' lives. It also does all this while using fewer resources.

This just-released article centers on one of the most difficult issues in medicine and health policy: death. It addresses the underlying issue -- end of life care -- that spawned the recent 'death panel' debate which festered during President Obama's push for comprehensive health care reform. It also turns the 'death panel' debate on its head.

Take the case of Metastatic non-small-cell lung cancer. The average life expectancy for someone with this diagnosis is less than twelve months and it is the leading cause of death from cancers worldwide. This type of lung cancer also leads to a range of debilitating symptoms -- weight loss, shortness of breath, difficulty eating and coughing up blood -- all of which lead to a significant amount of suffering.

In the past, patients with this terminal diagnosis had a choice. They could undergo aggressive treatment and put up with the associated significant side effects. Or, they could be referred for palliative care -- a clinical specialty that focuses on managing of symptoms, improving psychosocial support, discussing long-term treatment options, and aiming to improve a patient's quality of life. Essentially, there was a tradeoff between aggressive treatment and palliative care.

Temel and her colleagues examined whether or not that tradeoff was a false dichotomy. In a randomized control trial, her team looked at two groups of patients -- 151 in all -- who were recently diagnosed with metastatic lung cancer. Half the patients underwent the standard cancer treatment. The second half received the standard cancer treatment and also got early and immediate access to palliative care.

The idea of promoting palliative care is not without controversy. Proponents of palliative care argue that it's essential to improving a patient's quality of life. Palliative care teams can comfortably discuss with patients how they envision their last few months, inform about and prescribe medications to dramatically lessen unpleasant symptoms and council patients about their options. Proponents of palliative care also argue that it can save resources, allowing the terminally ill to avoid high intensity, exorbitantly expensive therapies in their last stages of life. It is this last argument that has provoked a reaction.

Frequently, the medical community has viewed palliative care as a white flag -- a sign that nothing more can be done. To them, instinctively, palliative care goes against the basic goal of modern medicine -- lengthening life -- and many fear that it is associated with less aggressive care.

The issue of reducing the amount of care delivered to terminally ill patients is not an abstract question. It turns out that much of US health care spending goes towards treating patients in their final stages of life. As Atul Gawande noted in a wonderful, recent New Yorker piece, it turns out that about a quarter of all Medicare spending goes to pay for care for five per cent of patients in their final year of life, and that most of that money goes towards care of little or no clinical benefit.

There is also staggering variation across the US in how much is spent on paying for care for patients in their last two years of life. At the UCLA medical centers, for instance, patients are in the hospital an average of 31 days, with spending during that time period topping $59,000. Similarly, at NYU's Langone Medical Center, patients are in the hospital for 54 days, with costs in excess of $66,000. Contrast that with the Gundersen Clinic in Lacrosse Wisconsin -- a national leader in integrated medicine -- where patients are in the hospital for 13.5 days at an average cost of $18,000. That's suggests there's a real opportunity for savings.

In 2009, several hospitals, including Gunderson, began to lobby legislators to include provisions to reimburse hospitals for having end-of-life discussions with patients, counseling them about end-of-life care, setting up living wills and the option of palliative care. This lobbying wasn't surprising because these difficult conversations take time, and hospitals wanted to be paid for them. As a result, a clause allowing Medicare to pay for these consults was included in the bill. Outrage ensured.

Some opportunistic politicians seized on clause. They argued that it was 'downright evil', would set up 'death panels' and would 'pull the plug on grandma'. Others bristled at the idea that the federal government was tacitly encouraging end-of-life planning. The debate nearly sunk health care reform in the US.

Now, Temel's paper provides strong evidence on the impact of allowing patients to get access to palliative care soon after they're diagnosed with terminal cancer. Costs aside, the paper illustrates that palliative care can go a long way towards reducing patients' suffering in their last year of life and also allow patients to live longer. Those patients getting early palliative care had a lower incidence of depression, less pain and nausea, and more mobility. What's more they also lived nearly three months longer, on average, than patients who did not have early access to palliative care. These results alone are enough to suggest that paying for palliative care is a good idea.

The other clear finding coming out of the paper is that in addition to living longer and having higher quality of life scores, patients who received early palliative care consumed fewer health care resources. To be sure, this raises an awkward mix of morality and money, but nevertheless, it's vitally important. Those who had early palliative care were more likely to avoid aggressive chemotherapy and more frequently had advanced directives, which asked that they not be resuscitated in a crisis. In short, it seems as though giving patients access early palliative care was able to increase the likelihood of people getting precisely what they often say they want out of their final months: it allowed patients to live longer, avoid suffering, reduce depression and minimize their burden on family and others.

In the end, the fervor over 'pulling the plug on granny' led legislators to abandon the clause allowing Medicare to remunerate doctors for counseling patients on their options at the end of life. In many ways, this put to bed the 'death panel' debate. However, this result likely will not improve the quality of life for patients or increase the fiscal stability of our health system.

This is not an easy topic. As medicine and technology continue to evolve and as science allows us to live longer, these types of debates are more and more likely to become the norm. These discussions seemingly place at odds the idea of extending life with the prospect of reducing spending. Yet, as Temel's work shows, this is not necessarily the case. Some interventions -- like providing access to early palliative care -- can extend life, reduce suffering and save money.

Ultimately, we just need the courage to discuss, debate and implement these sorts of policies. However, as the health care debate shows, unless we can have a reasonable debate, unless we can tolerate discussing difficult issues, we won't be able to implement these bold ideas and in the long term, this will make things worse for patients, the health system and our fiscal security.

 
 
 
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VA Magoo
08:00 AM on 08/26/2010
Senate Finance Committee Chairman Max Baucus (D-Mont.), one of the chief authors of the healthcare law, suggested Tuesday he did not read the entire piece of legislation.

Speaking at a forum in his home state, Baucus and Health and Human Services Secretary Kathleen Sebelius were asked by an audience member if they had read the whole bill and “if not, that is the most despicable, irresponsible thing.”

“I don’t think you want me to waste my time to read every page of the healthcare bill,” Baucus said, according to the Flathead Beacon. “You know why? It’s statutory language. ... We hire experts.”
10:22 PM on 08/25/2010
People who are posting on this topic seem to have a lot of fear about palliative care. Palliative care does not preclude agressive treatment. Palliative care is not just for cancer patients. The objective of palliative care is to make the patient more comfortable. We aren't discussing death panels, socialized medicine, obamacare, or global domination. We are talking about a system in place that can make patients who are in pain more comfortable. See www.desperatecaregivers.com.
07:28 PM on 08/25/2010
An interesting omission is that studies show that aggressive chemotherapy regimens in non small cell lung cancer also improve length and quality of life. This is the standard that the new study should be judged against. As a physician who deals with this daily, I think some of this article is intentionally misleading, as there are some patients who have long term responses and benefits from aggressive care.
11:58 AM on 08/26/2010
Palliative care is not mutually exclusive from what you consider to be aggressive care. You are confusing palliative care with hospice, which are not always the same thing.
The primary outcome of this study was quality of life, not survival, which is the measure used in most oncology studies. A close analysis of this study shows that it was not misleading at all. In fact I believe the lead investigators were somewhat surprised by the survival benefits of palliative care.
As a physician as well, who deals with this daily, in my experience, patients who have their symptoms managed well tend to do better overall, whether or not they receive "aggressive" therapy such as chemotherapy.
11:26 AM on 08/25/2010
Curious if the goal of medicine is to extend life rather than heal the sick and injured. The two are not necessarily the same. In any case, we and medicine have met the goal: our lives are extended by 2-3-4 decades. To what extreme lengths does medicine claim the right to go? How greedy are we for those last toddling days?

This relates to the always unspoken: that medicine owns our dying. It does not! Each person owns their own dying. The palliative debate is great(ly overdue). But missing is an acknowledgement that, or personal action based on, each person needs to take responsibility for the type of death we want. We say we want to die in peace, then give ourselves over to medicine's death-denying command-control system. Unlikely to have this cake and eat it too.

SisterAnn: you can buy oxygenators online. Careful shopping can yield great deals. We don't have to play the insurance rental game.
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Damiano Iocovozzi MSN NP
Director, CEO, the Thomas Edwin Walls Foundation
11:04 AM on 08/25/2010
People are certainly beginning to understand the human cost of doing "everything" for a terminally ill loved one like pursuing a cure orientation when he is past all cures or remissions or reprieves from old age. Pursuing a cure orientation for a terminally ill person is simply wrong for it can end up degrading their precious quality of life and remaining good days. Life in the ICU is a nightmare because there are no honest medical goals to achieve, no restoration of health, no return to baseline, just suffering and pain. A code blue is not curative nor is a life support machine. They are desparate measures, or band aids, that postpone the inevitable for a short time. In my experience of 23 years at the bedside, no terminal patient ever emerged from the ICU walking or cured. The cruelest part is their inability to even say good bye with a large endotracheal tube from mouth to lungs. It is madness! Visit my web page for free blogs and podcasts with prominent physician radio personalities. soonerorlaterbook.com
07:31 PM on 08/25/2010
I am an ICU and lung physician. I have seen many patients who survive ICU stays despite Stage IV Lung cancer and who appreciated the weeks, months and years that they have been given. Your view is one sided. I have long term relationships with these patients and these decisions need to be fine tuned to each individual.
12:29 PM on 08/27/2010
Dr. GC1301, This is a subset of patients who maybe Stage 4 but in this subset all future aggressive treatments are to be considered futile or harmful, especially after differing opinion meetings by specialists and other providers confirm the obvious. The patients you speak about belong to a larger set who may benefit from salvage therapy. The subset mentioned by Iocovozzi are past all cures, all remissions or reprieves from old age. Iocovozzi uses established biomedical ethics frameworks to restate the goals of medicine for this subset: doing no harm, relief of symptoms and providing advice and education on diagnoses. These honest goals of medicine can be accomplished by hospice nurses for those past all cures, or remissions and where future aggressive treatments will only cause suffering. Gisele
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Rendy Bee Mulyono
Someone with constant stream of
06:13 AM on 08/25/2010
It should be about choice. If the dying patient want to fight till the end, then access should be granted to such facilities. If one thinks dying should be done with grace, not with radiation wars inside of the body, then it's also up to the patient. The key word should be "terminal", as in very little probability of cure. If the patient prefer to pursue religious means (hoping for miracle, or a strong boost of suggestion) or other alternative medicine, it's also up to them. Point is: it's not the doctors', politicians', families' body that's suffering. Eventually, as death becomes unavoidable, patients should have an open choice.
07:43 PM on 08/24/2010
Our payment system provides the wrong incentives for the result we want to achieve. We should be paying for health care not sick care. Today, health care providers and insurers make money to treat you when you are sick, not to keep you well. Health care providers should be paid/incentivized to use prevention, maintainance and early intervention to keep us healthy. Then they have to pay for our treatment should we have to be hospitalized or have serious costly procedures. In the Program of All-inclusive Care for the Elderly (PACE) program. That is what essentially how the business model works. PACE is a reletively new Medicare benefit that target only seniors who are already meet the criteria for nursing home services by their respective State Medicaid criteria. PACE is responsible for, literally, all of the senior's care needs and as such cannot ration care or provide substandard care. To do so would drive up utilization for much more expensive institutional and tertiary care which the PACE organization will have to pay. That relationship give plenty of incentives for a PACE organization to working with the patient for the best outcome and in nursing home level patients, it is ultimately their end of life scenario. But until then, we have to have some fun.
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Damiano Iocovozzi MSN NP
Director, CEO, the Thomas Edwin Walls Foundation
12:22 PM on 08/25/2010
Good point Mr Szutu. It costs about $10,000 per day per patient in ICU for basic room and critical care nursing charge. The diagnostics, labs, meds and many consultations are apart from the basic room charge. For a terminally ill patient this is a bonanza for all the pharmaco-medical industries swirling about this terminal patient, about 1.2 trillion US dollars spent on medical futility annually which would be better spent providing basic primary care for every human being on the planet. The cost of in-home hospice visiting nurses is $100-450 per day per patient which provides freedoms not thought about: freedom to be at home, free from tubes and a nightmare of life support, turning, suctioning and all things medically futile. Freedom also means being free from pain, anxiey, loneliness, fears and maximizing the quality of life remaining. The current American way of death is inhumane, and very expensive. For a dying person, there are few realistic medical goals to achieve: relief of symptoms and education and advice. That's all accomplished at home by the visiting providers. Milking billions out of the system is not an honest goal of medicine, even if people feel entitled or threaten lawsuits. Please visit my free blogs and web page at soonerorlaterbook.com
07:26 PM on 08/24/2010
Palliative care is a win-win-win-win. People live longer, they can have whatever medical treatment they wish in tandem with palliative care, they have enhanced quality of life, and it costs less. Family caregivers win too with improved peace of mind and much needed help with caregiving. How could there ever be a debate about this?

I only wish that we had known of palliative care's availability to seniors much soon than one month before the death of my father at age 91. My husband, sister and I blog about this and other caregiver issues at www.desperatecaregivers.com.
06:48 PM on 08/24/2010
Doctors already "do people", so it's happening.
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samtee
Shankapotomus.
05:25 PM on 08/24/2010
The problem is if Obama care doesn't get repealed you want have a choice.
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Welib
Peace on Earth!
06:54 PM on 08/24/2010
Obama care supports end of life counciling LIKE THEY HAVE IN EVERY OTHER COUNTRY IN THE WORLD! Death panels was a lie and people NEED end of life counceling. Your argument is old and debunked already. When are you people going to start telling the truth?


More than 61% of Americans DO NOT WANT HEALTH CARE REPEALED. It's NEVER going to happen.
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Robert Meek
09:20 PM on 08/24/2010
This would be a tad more coherent if your phrasing were coherent, as well.

You don't mean "...you want have a choice..." but rather "...you won't have a choice..."

You don't know the difference between "want" and "won't" and your commenting?

BTW, your allegation is a lie. For all of the flaws in Obama's health insurance reform that is a farce for we are told it is health care reform, and let's get this straight, it is NOT "Obamacare" so why not grow up and talk about it as if we're all adults? It DOES do ONE thing, and that is PROMOTE discussion of end-of-life palliative care hospice style options, which has NOTHING to do with forcing anyone to do anything, despite THAT LIE too that it "forces" people to "kill grandma" and has "death panels"! NOT!
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03:53 PM on 08/24/2010
Quality of life should always take precedence over quantity. People should know they have choices and they need to make those choices, I would think, while they are relatively young. Perhaps starting at 50 and of course always subject to change.

There is a wonderful organization called Aging with Dignity that produces a fill-out pamphlet to assist in making those choices. http://www.agingwithdignity.org/five-wishes.php

I have given copies to my friends and I urge people to go take a look - make decisions for yourself or someone will make them for you when, and if, you are unable.
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Welib
Peace on Earth!
06:56 PM on 08/24/2010
That's great information. Thanks for sharing. Everyone should have end of life counceling like they do in every other country in the world.

It's too bad Sarah Palin has frightened people with her death panel lies.

Fanned!
07:35 PM on 08/25/2010
I don't think you should make the assumption that quality alway trumpts quantity. Quality is much harder to measure. It somewhat depends on your personal views of what life really is about.
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07:43 PM on 08/25/2010
Quality is not difficult to "measure" at all, you either have it or you don't. It really has nothing at all to do with "personal views of what life really is about" - I'm surprised anyone would make such a statement.
03:21 PM on 08/24/2010
They won't stop until they privatize Medicare.

My husband went to his doctor today. His blood sugar was high and so they wanted to recheck it. It was back to normal, but they want him to come in and learn how to to test his own blood sugar with a machine they have. I suppose they will either rent or sell him the tester.

Things Medicare used to buy, they rent now. Oxygen generators could be bought for $700 but now they rent one for $200 a month.

This is the way it was about two years ago.
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Welib
Peace on Earth!
07:01 PM on 08/24/2010
If they bring in public option after November you won't have to worry about it. I know what you're going through. I have 2 cancer patients in my family in the Fla and Ohio and they are fighting every day with their insurance companies for treatment. One is slipping away while they wait for the insurance company to approve life saving treatment. We shouldn't have to live like this.

Gawd, our system is so antiquated and broken. No one should be going through this! Go to a Canadian pharmacy website and buy it online. They're not cost prohibitive and they'll be way cheaper from Canada.
03:07 PM on 08/24/2010
There is also another option and that is the death with dignity. This should be the right of the individual with consent and advise of physician(s). When the patient is clincally determined terminal is there any sense in ignoring his or her wish with respect to this option?
From an economic standpoint, free enterprise capitalism allocating medical services is the simple solution, you have no money demand for services, you languish until you die and at that point likely in the street. Republicans in America seem to prefer this approach (until they are afflicted).
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02:52 PM on 08/24/2010
We don't need to go down the slippery slope of encouraging anyone to go 'early'.

I don't know anyone who is or who is forced to remain on feeding tubes.

Therefore there is no need to create facilities for people to encourage that they help relieve costs to the cost of medical care by 'opting out'.

The answer to all of these so-called 'costs' is to produce more supply - PERIOD.

That goes for medical care and equipment to social security.

Everytime the issue of 'costs' and 'money' comes up, the first thing Wall Street/City of London suggests to politicians is to CUT CUT CUT CUT benifits instead INCREAS INCREASE SUPPLY.

The reason being is because Wall Street/City of London cannot make money off an abundance of supply, unless it's a consumer bubble, they can only make money off the scarcity of goods and services; the rationing of such, the transforming plenty into 'limited precious resources'.
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Seymoreclearly
Get your info from more than one source!
05:07 PM on 08/24/2010
It seems you misinterpret. This isn't about encouraging anyone to go early. It's about quality of life when faced with a terminal illness. In my short life, I've watched many friends suffer thru what I now view as unnecessary treatments which did nothing for the quality of their final days or months. In all cases, there were no miracles, only inevitable, painful, unnecessarily prolonged death. The process of slow death from terminal illness is undignified. Palliative care at least allows a terminally ill person to experience a better end to his/her life. It's why hospice care exists in the first place.

Just because an event is outside your scope of experience doesn't mean it hasn't happened somewhere, to somebody else. I've watched a couple friends languish on feeding tubes when their families were unwilling and/or incapable of accepting the inevitable -death.
07:11 PM on 08/24/2010
I have had a lot of experience in this matter. It sound so easy and simple when people talk about providing paaliative care. It's stated goal is to provide cost effective care that neither abandons the patient or wastes resources on un-needed care. It's not so easy. It depends on getting two things right. First all the people involved need to behave in an honest manner. And all the medical personal must be competent and experienced. It may sound harsh but I have never seen these two conditions met except early on in the days when Hospice care was in its infancy and staffed 100% with volunteers. In those days the right people did it for the right reason. In todays world Hospice care is a business. I am a physician and am strong armed to sign forms for non-terminal patients that state the patients have less than 6 months to live. It's an open secret that many physicians sign these things just to qualify the pt(especially for the benefit of the family) for extra nursing help(hospice nurse) in the home. Hospice aggressively markets itself to the families of chonically ill patients. The families are happy to get the govt. subsidized help with bathing and other labor intesive demands of the chronically ill. It takes a lot for a family doc to be willing to antagonize everybody(pt,family,hospital administration,hospice) to stand up and say "no" just on principal. This is just one example of how things get messed up,
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Decorina
Hypocrisy means your karma ran over your dogma
09:31 AM on 08/25/2010
I went through it with my Mother. You know what you are talking about. F & F'd.
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Welib
Peace on Earth!
07:06 PM on 08/24/2010
WHAT are you talking about? This nonsense and I don't think you understand this. You've been listening to Sarah Palin and her death panel lies.
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11:36 AM on 08/25/2010
I despise Sarah Palin but I know how stupid it is to be partisan.

'Healthcare reform' was all about how to immunize HMOs from lawsuits when they cut costs by getting rid of people 'early'.

I beg you to go see a doctor and notice all of the new kinds of 'questions' that will be used against you in the future.

Proceedures will be recommended to you instantly that require 2nd and 3rd opinions.

You will be counseled on how important it is to take less costly forms of proceedures and will be disqualified from covereage if you refuse to take advice from HMOs.

Sarah Palin maybe a fool but even a clock can be right twice a day.