Wednesday, January 04, 2012

What if they had had to pay?

A true story, with changes made to protect privacy.  A 89-year-old man with dementia, a heart condition, and other serious medical conditions fell in his Arizona apartment and broke his hip.  His children, wanting the best possible care, arranged for him to be air-lifted to New York.  There, the orthopaedic surgeon advised them that the chance of their father surviving hip surgery was very low, but he would do as the family wished.  The man's three children could not agree.  Two would have avoided the surgery, but a third felt very strongly that everything that could be done for the father should be done.  The other siblings, out of guilt and respect for the third, acceded.  The surgery took place, and the father spent three days in the ICU before his heart gave out.

Here's the terrible and hard-hearted question I pose:  If the costs of this procedure and hospitalization had not been covered by Medicare, would the man's children have proceeded along the chosen path?  I am guessing not.  I don't know the total bill incurred, but it was certainly in the range of tens of thousands of dollars.

In the US, we don't have a good societal process for making these decisions.  In the United Kingdom, though, they do, as reported by Bob Wachter in a recent blog post.  Here are some excerpts:

[D]uring my six months on sabbatical in London, when I asked British physicians or hospital administrators who have spent time in the US about their main impression of our healthcare system, I nearly always heard some version of, “You people don’t know how to say no to anything.”

In the UK, they have built an organization that makes these tough decisions: the National Institute for Health and Clinical Excellence (NICE). I was lucky enough to spend several hours with its leaders last week in the organization’s London headquarters. NICE is awesome, not just for what it does, but for what its existence says about the maturity of the British political system when it comes to healthcare.

I asked Sir Michael [Sir Michael Rawlins, NICE's founding chairman] what it was about the culture of the British people and the NHS that allowed NICE to function, when America has such problems saying, and accepting, a forthright “no.”

“The man on the street gets it,” he replied. “They know that there is a finite amount of money. And politicians get it as well — they know that someone is going to have to make these tough decisions, and they’d rather it be us than them.”

Imagine that.

Bob concludes:

Decisions over setting limits are invariably wrenching, but our failure to create a transparent way to make these decisions just means that rationing occurs implicitly  and haphazardly.

Ultimately, silly season will end, our society will come to grips with the need to choose, and we will begin looking for a method of making these thorny decisions. When that day comes, it’s nice to know that we have a model to learn from.

26 comments:

Paul Levy said...

Just to be clear, Medicare did not pay for the air transport.

Barry Carol said...

Personally, I was and still am a strong supporter of the proposed Independent Payment Advisory Board (IPAB) and efforts to proactively significantly increase the number of people who execute living wills and/or advance medical directives, especially among the 65 and older population. All the demagoguery, mainly from the political right, about “death panels” is regrettable to put it mildly.

Anonymous said...

I certainly agree with Barry; it is no accident that while the right decries the health care law, even the newspapers have noticed that they have put forth no ideas of their own on how to improve an unsustainable health care system.
As to the described situation here, unfortunately it amounts to Medicare, and therefore the taxes of all of us, being held hostage to relatives' emotional baggage when deciding on care alternatives. With the political right's dedication to individual responsibility, surely even they would agree this is unacceptable.

nonlocal

Jesse said...

What you fail to mention (perhaps for avoiding an appearance of being politically one sided) is that when something even remotely similar to this was suggested, a prominent politician, for reasons of trying to score political points (i.e. make a political opponent look bad) began hawking the term "death panel".

On the other hand, the American people get what they deserve by electing the people they do....

Anonymous said...

You're absolutely right that people need to be able to say no. First, the siblings should have said no under the best advise of the doctor. Failing that, the doctor could have refused to do the surgery. Failing that, a panel of medical ethicists at the hospital could have been consulted. The more local, the better.

The best and first line of cost containment should be living wills and advanced medical directives. Even then, there will be those who don't want the plug pulled.

For sure, the healthcare market is not efficient. Paul, I applaud your efforts and business acumen to have a sane dialog on solutions to cost containment since the market isn't set up to naturally do that.

Anonymous said...

The bigger question is why the family didn't discuss how to handle this scenario prior to an emergency. Would the father wanted such extraordinary measures taken? Families need to have these discussion openly, and often - and doctors need to encourage the discussion.

Kevin W. Bridges said...

As a hospital chaplain, I could blog about similar stories with positive outcomes in which the man or woman lived 5 more years. 5 more years with their children, grandchildren, etc.

What you say may be cost effective, but you miss other important issues. I guess we could put out to pasture all old people or sickly people who are costing the system too much. That sounds good doesn't it...unless it's your loved one!

portland FNP said...

Well--You know what? If we actually had TIME in primary care to discuss these issues with people early in life--maybe even make them part of a quality measure--and started to really have these conversations with people BEFORE they were in crisis, what a difference that would make.

I agree with the blogger that is referenced that there needs to be "transparency" in all things.

There is a beginning and and end to the circle, no matter if your circle is small, medium, or large.

This kind of education of our public can only come from those that our patients trust the most (or at least used to) their primary care provider.

Upstream thinking dictates that this relationship be the fountain from which these decisions flow and were the seeds for later decisions are planted.

As i have mentioned before. Take primary care out of the insurance wrap somehow--my plan is prepaid primary care--but one cant get greedy, lest we end up in the same mess. The insurance companies get paid 365 days a year to "take care" (haha--aka "insure") people and yet end up keeping a lions share of the money. The poor PCP--who is bedraggled by the end of the day because they have beat up by the system again--only gets paid to drag people in for often unnecessary care, often using the patients prescription refills as a way to arm twist them into a visit that may or may not be needed. For example, many people who are stable on their meds and "responsible" could do with a lab test and a fu phone call instead of an office visit--but we don't get paid enough for that.

Primary care. I all begins and ends with primary care

Teri Bunker, FNP
www.bridgecitymedical.com

fairhavenhorn said...

Having seen the ugly underside to NICE, I am not enthusiastic about trying to directly copy it. But the concept of "saying no" does need to be incorporated into decision making somehow. Futile care, especially toward the end, is too much built into the US system. My experiences are that this drive for futile care is from the families and from doctors fear of retribution, much more than any other factor. I've seen no pressure for futile care when the family is comfortable with limited care toward the end.

I recall some bitter amusement I had over the heart wrenching stories of a girl who died because a "cruel insurance company" denied a transplant coverage. These were used as an argument for having a government healthcare system like the UK. These US advocates were obviously unaware that under the provisions of NICE this girl would also have been denied a transplant in the UK. The "cruel insurance company" had guidelines allowing four times the cost that NICE allows, and requiring only half the expected life extension that NICE requires.

This story was highly influential and repeated many times as part of the arguments for changes to the US healthcare system.

We have a long way to go when the general US public expectation is so immensely different than the UK expectations.

Jerry said...

From Facebook:

Paul, my brother, in California, was already diagnosed with terminal bone cancer (Waldenstrom syndrome), had congestive heart failure and late onset diabetes - and his primary care doc had offered a diagnosis of Pick's Disease -- when, somehow, in May 2002, he managed to get approved for a knee replacement. The procedure was done, but he never had the strength to use the new joint for more than a few steps around his apartment or from car to wheelchair, and died five months later. Who is to blame? I don't know. Not his family -- for a variety of historic reasons they were not on speaking terms with him at the time.

76 Degrees in San Diego said...

A copay of 10K could have become a
contributor to the decision making process.....(it really is 76 degrees out here)

kaya_sf said...

I'm not sure why it always seems like we're limited to comparing the US healthcare system to other anglophone countries. In France they have a private health insurance system that provides coverage beyond the basic government coverage. Services are privately provided, publicly reimbursed, and if you desire to go above and beyond the basic level of care, you may do with private coverage or out of pocket.
It seems to me the best balance of humaneness and market-style efficiency.
Of course, if anyone here proposed to base our system on something in France, you'd be lucky to only be called a socialist.

Anonymous said...

Even if I had "No Code", "DNR", "Please, my mind, heart, and limbs are going", and "I'm in unbearable pain" tattooed everywhere imaginable, and had a living will, etc. the culture here is "don't do the right thing" largely promoted by the folks who think climate change is a myth, but have no trouble believing in 2000-year-old texts and that the South will rise again.

The flip side is the paranoia regarding pain medicines that are actually effective. "Gee, somebody might abuse them. Or accidentally OD. So, let's ban them." Yeah, and while we're at it, let's ban all cars because some people exceed the speed limit too or have accidents. Let's legislate against anything that hurts at least one person a year.

So, saying "Surgery's expensive and pointless. Let's not" is not enough of an answer. If the wishes of the patient aren't known, give them the best painkillers available at an affordable rate and so much the better if they have "recreational" benefits. As long as they're not robbing people for a fix, and there's something approximating informed consent, why the hell not? For FSM's sake, cigarettes are still legal. If the wishes of the patient ARE known, and the patient wants out, HELP.

I recently read an article: "How Doctors Die" (http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-doctors-die/read/nexus/) by Ken Murray, MD, a Clinical Assistant Professor of Family Medicine at USC. Interesting reading.

Daniel Bennett said...

Is it really worth much time worrying about the cost of extra care for a fraction of all the patients? What is really worth discussing is the lack of care based on monetary decisions for a much larger population with often many more years to live if given adequate care when it would count. Denial of care based on the lack of any or adequate health insurance coverage is costing an estimated 18,000 unnecessary deaths a year in the US ( http://www.usatoday.com/news/health/healthcare/2002-05-22-insurance-deaths.htm ) Money is wasted in buying frivolous and luxury items besides health care that may not be optimal. Blaming caring family members for making difficult decisions is not a winning or worthwhile argument. And promoting living wills should be based on their helping families, not as a way to what might be seen as cold blooded monetary decisions.

Looking at the British system, it is much more instructive to look at the real major difference, that the society has made the decision to protect the health of every single citizen regardless of ability to pay. Until the full enactment and realization of full and fair health care for every citizen here in the US, all of our decisions will be tinged with the discussion of money over life.
Daniel Bennett
Washington, DC

Unknown said...

A large problem with Living Wills and Advanced Directives is that if a family member/next of kin revokes it and say I want everything done and the doctors don't and abide by the AD, the doctors are afraid hey are going to be sued. So they code these patients anyway, perform the surgery and run tests that will in no way change the ultimate outcome. I have seen this over and over again in healthcare as I am a Med/Surg Geriatric Nurse. It saddens me....

Paul Levy said...

Daniel,

Good points, but the federal health care law that was enacted will deal with lots of them. Meanwhile, this other issue will remain.

And, in any event, the topic in the blog post is worth worrying about because that fraction of patients accounts for a large percentage of the US health care budget.

Paula Hunter said...

@Daniel, I don't think we are talking about a fraction of the patients, as it is a 100% certainty that all Medicare recipients die.

Last year, Medicare paid $50 billion just for doctor and hospital bills during the last two months of patients' lives - that's more than the budget of the Department of Homeland Security or the Department of Education.

And it has been estimated that 20 to 30 percent of these medical expenditures may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.

Barry Carol said...

The issue of patient expectations in the U.S. vs. other developed countries, especially as it relates to end of life care, is a huge deal in my opinion. So too are differences in the medical tort litigation systems in driving physician behavior. To me, the money quote from the post is this:

“The man on the street gets it,” he replied. “They know that there is a finite amount of money. And politicians get it as well — they know that someone is going to have to make these tough decisions, and they’d rather it be us than them.”

Daniel Bennett said...

Making poor medical decisions per the geriatric nurse, is a real problem. And, Paul, I agree that end of life care is often fraught with issues that we should tackle now. That they cost money or not, should not be a consideration for society (unless we really were an impoverished society where there was no money for any luxuries). Perhaps then, there would be a larger effort to provide the support from doctors and case workers for the families to make decisions that were in the best interest of the patients overall survival and quality of life.

Making decisions at potential end of life scenarios is hard enough without adding the stress of financial implications.

I think confronting the problems with adequate support for families and better explanations of Living Wills may lead to better solutions for society. Protecting doctors who follow the AD/Living Wills is an important reform, but not because of the cost. It may seem like a good way to reform the system to bring up the costs, but it is not good for political or for provoking the reforms that will make end of life decisions easier for patients and families.

Daniel Bennett
Washington, DC

Anonymous said...

@kaya---the French system would never be accepted here because it would create the perception that "rich people get better care" in the minds of the people who think more care equals better care.

Susan Shaw said...

This blog entry is my life.  These are the patients and families I meet every week I work in our ICUs.  

The question to ask is not "what if they had to pay?" It is "what if we had to be honest and brave with our patients and families?" Or maybe it is "what if we had to enter into meaningful shared decision making discussions?"  Or try, "what if we shifted the conversation from Do you want us to do everything to What are the realistic goals you would like us to try to help you meet?"

We cannot get all mad and upset when we give patients and their families bad choices and then they choose to go down a bad choice path.  I would say such bad choices include being medivac'd thousands of miles, in pain,(increasing the risk of delirium, never mind the  disorientation of an elderly man with dementia) or perhaps offering ICU care which, while sometimes having great value for some of our patients, often prolongs suffering while separating families at the time they need to be together the most.  

We own this.  The problem isn't the payment/cost, its our unwillingness to enter into honest, meaningful conversations about the goals patients and their families have.  

Emily Lu said...

While I think this is definitely a important discussion of how we should deal with situations like this (end of life care, improving the cost-effectiveness of our system, helping us as a culture understand that sometimes we just need to say no to things), I don't think the way that you've framed the question is productive.

The actual cost of much medical treatment is simply too much for most people to be able to make rational decisions about. And I'd question the ethics of making judgements regarding medical treatments only available to the few (i.e. the 1%) who are able to pay for them.

kaya_sf said...

Hi Anonymous (6:34PM),
I disagree. People in the US accept the idea of inequality in monetary wealth to a much greater extent than European countries. There are many examples.
Hopefully it hasn't escaped anyone what the audience reaction at one of the republican primary debates was when the question of letting an uninsured patient die came up.
The only thing anathema to those who pay homage to the talking heads of cable tv is a system that assumes everyone should receive healthcare.
If they want the free market system, bring it on. I want menus, for crissake. But no, I only get to find out how much it costs 2 weeks after my high deductible plan and random laboratory have meted out their agreements.
Regulated markets and basic preventative coverage for all: Socialism!!
This ridiculous "compromise" system that has persisted here is costing us dearly.

Anonymous said...

My sister had a health insurance policy that she paid for out of pocket but it didn't include mental health coverage (parity doesn't cover individual policies).

She had lived for most of her adult life successfully with bi-polar disorder and got appropriate medical care that included mental health care from a federal plan from her job. When she lost her job at age 48 last year she was forced to buy a fairly expensive plan (640 a month) but it lacked any mental health coverage and she didn't qualify for anything public.

Shortly after Thanksgiving she died from suicide or perhaps more correctly she died from not having the right type of brain disorder. If she had parkinsons, dementia or even a concussion she would have been cared for but our society for some reason didn't feel she was worth caring for and it makes me sad.

Barry Carol said...

Susan Shaw wrote: “The problem isn't the payment/cost, its our unwillingness to enter into honest, meaningful conversations about the goals patients and their families have.”

That’s a great point. My question is why is this? Are doctors reluctant to initiate the conversation because it’s difficult and uncomfortable and/or because they’re time starved? If so, why not let a palliative care team perform this role? Do doctors resist this? Will the institution be reimbursed for it? The Gundersen Lutheran Health System based in LaCrosse, WI is able to do it quite effectively and end of life care costs significantly less at Gundersen than elsewhere. At the same time, patients and families get the care they want and they don’t get the care that they don’t want. It can be done.

Anonymous said...

I don't think they would have done all of that. If they had to pay, they would have let him slip away in peace in his own home.