Neurological Correlates

This post is about health care costs — but let me digress into how end-of-life decision- making came onto my radar. A few years ago, as the Terri (Schindler) Schiavo tragedy played out during prime time, I went to see Bodyworlds, at a museum near the medical school downtown. While leaning over the light table, studying illuminated brains sliced in cross section, I wondered out loud, “What does Terri Schiavo’s brain tissue look like?”

Mrs. Teresa “Terri” Schindler Schiavo, CT scan

Left: CT scan of normal brain; Right: Schiavo’s 2002 CT scan provided by Ronald Cranford, showing loss of brain tissue. The black area is liquid, indicating hydrocephalus. (Via Wikipedia)

Somewhat unbelievably, there was a brain surgeon and neurology researcher right there, in the crowd looking at the brain cross sections.

(We were next to a world class neurology teaching hospital, so that probably explains it). The doctor explained basically what parts of the brain had atrophied, and why it was unlikely that Terri would ever have any cognition again. He seemed very sure that she should no longer be on life support.

I thought Mr. Schiavo – Terri’s estranged husband — was a little too eager to stop the life support, so I wasn’t so sure about stopping life support. I don’t remember if he stood to profit, but I recall that he had specifically withheld treatment — treatment which was to be paid for from a personal injury settlement fund (which had resulted in Terri’s injuries to begin with).

There was a mismatch: the court awarded a certain amount as compensation for medical treatment, but the husband decided to keep it instead of providing the medical treatment. Was that unethical? How could someone who stood to benefit financially also be the one making the decision?

I also teach a post-grad class which involves medical ethics and health economics, so a few times a year, I try to catch the updates in the research. One statistic that hasn’t changed in a long time is that about 30% of all Medicare dollars is spent in the last year of life (detailed here, for example). That’s a lot of money. By and large, the health care provider default position, in the absence of any wishes expressed otherwise, includes hospital end of life technology, at least to some extent. Is it necessary? Are we making ethical decisions as to who gets treated and who doesn’t where that kind of money is spent on end of life?

In a recent report, ethicists say you have to consider the money in deciding whether to use costly ICU resources — at least for keeping the brain dead patient physiologically alive. Appelbaum et al., in an upcoming JAMA paper (cite below) discuss the reality of ICU costs (this, in the context, of the ethics of continuing ICU care after brain-death for a few days so that a traditional/complementary medicinal practice can be followed):

Up to this point [in the article] the hypothetical variations have assumed that treatment is not costly. But care in the ICU is quite costly in two ways. First, a three-day stay in the ICU is very expensive in dollars—according to internal hospital estimates, on the order of $9,000 to $18,000 in direct marginal costs before considering the cost of infrastructure and overhead. Second, an ICU patient requires around-the-clock devotion of time, energy, and concern from nurses and physicians. Even if the family reimburses the federal government for the entire monetary cost of care, the medical staff may still have a complaint: they are being asked to devote themselves to a purpose that falls outside of their professional commitments and that, in part, undermines those commitments. They signed up for the care of patients, and they are being tasked with the care of corpses. So a complete assessment of this case [keeping a brain-dead individual alive in order to perform culturally customary rituals] must include the burdens that the continued treatment of a dead body puts on both the public’s resources and the medical staff.

So what about the 30% of Medicare spending? Isn’t there an ethical duty to think about others who could benefit from Medicare funds, such as those with kidney dialysis or those Alzheimer’s? Should everyone who wants it get the ICU resources? Who decides? The hospital front office? The doctors? The family? The patient – who maybe doesn’t have end of life instructions on file?

First things first: lower the costs. Health economists are looking into comparative medicine. For instance, not all regions have the same costs. Barnato et al. report that some regions spend double what other regions spend — and that these differences are not explained by patient preference. Pretty much most patients want to die at home, and not in a hospital, as noted before (see the comments).

There are some interesting suggestions on a new blog,”Healthcaresbroke“ (Click the red box below to go to the blog). (HT Christian Sinclair ). Graham, who is the author, is a medical student who has no problem doing things like calling up John McCain’s office and asking what’s the deal with the Senator’s position on autism and vaccines. (Thanks Graham, I was wondering the same thing.) (Plus he posts great images from the National Library of Medicine – History of Medicine digital images. )

In his post, End of Life and Futile Care he goes through the struggles with what we are all struggling with: end of life care shouldn’t be what it currently is, but we don’t know what it should be. The whole post is very interesting, and Graham has a new idea that I’m agree with in principle :

. . .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. . . .

I like this idea, and his idea that people should be required by law to have end of life instruction. Practically, however, I wonder if after people take the $30K they or their families might change their minds. What then? (Sort of like Harold and Maude at the end — she didn’t plan to die in the hospital, but she did anyway because of Harold’s desire to take extraordinary measures). We could change the laws, but we can’t change the basic ethical tenet that you can’t hurt people. Arguably, there may not even be informed consent as $30K may be coercive to people in their ’90’s – the money may amount to a bribe.

But more to the point, I think that there is no one-size-fits-all end of life care. Living to be 90 (as in Graham’s experiment) probably means you haven’t had large health care expenses — like heart and lung disorders or cancers in remission perhaps. A 90 year old probably is on a slow decline, and may not need the major health care spending until the last few months or weeks of life.

Rand Corp. researchers propose organizing health care on the basis of need:

Effective, Efficient End-of-Life Care Should Be Organized by Need
The existing health care system generally classifies patients by disease and setting of care, but this method is becoming less effective because it works poorly for the increasing number of elderly individuals who have multiple diseases and need care in more than one setting. Lynn provides a framework, shown in Figure 1, that groups the entire population according to their health status, which predicts the types of services they are likely to need.
• Healthy people and people with acute, time-limited conditions.
• People with stable or early chronic illness that is consistent
with their usual social role and long life.
• People with chronic, progressive, eventually fatal illness.

Here’s Figure 1 — Among those with chronic, fatal illness, with cancer, there is a steep decline, and need for serious medical care; with heart and lung problems, there is a gradual decline with intermittent episodes of serious medical need, and with frailty and dementia, there is a linear decline alone (click to enlarge):

The difference in health care is illustrated here (click to enlarge):

So we ration medical care according to how much benefit we think it will provide, and how long we think it will extend the person’s life. We sort of do that now anyway: if you are an alcoholic with chronic kidney disease, kidney dialysis and ESA treatment isn’t suggested, but will be provided if you request it. If you are otherwise not too unhealthy, kidney dialysis is suggested and information is provided to you.

At the heart of the matter is the premise that we all want to live as long as possible. I think we all need to query the premise: Do we really want to live that long? Quality of life is key. When I think of the 95-year olds I know (or knew), they lived in nursing homes, not in good health, mostly had dead friends and children, and woke up every day with the same thought: “God, take me today!”

So I go back to Graham’s original idea, the $30K and free hospice. The part I like is the part that says, “live it up a little.” Maybe that should be the law: people need to make sure they live their lives fully. I think the less we get out of life when we are alive, perhaps the more we don’t appreciate death. I sense a sort of panic — like, “I spent 40 years at a desk job so I want to do something exciting before I die!” kind of baby boomer mentality. Maybe we should all have grief counseling for ourselves starting around, say, age 30, just to understand that life is short, and we should get all we can out of it now. We would perhaps make different decisions — take a less prestigious job in favor of spending more time with our loved ones, or pursue a cause we are passionate about instead of pursuing having more money than our neighbor. Maybe the fuller our life, the less we would have any regrets in death. Then maybe we wouldn’t spend so much on last-year-of-life.

Applbaum, A.I., Tilburt, J.C., Collins, M.T., Wendler, D. (2008). Ethics Grand Rounds at the NIH Clinical Center:
A Family\’s Request for Complementary Medicine after Brain Death. Harvard Kennedy School of Government, Faculty Research Working Papers Series, February(1), 1-21. (Forthcoming in Journal of the American Medical Association)

Lynn, J., Adamson, D.M. (2006). Redefining and Reforming Health Care for the Last Years of Life. Rand Research Briefs, xx(xx), 1-5.
Barnato, A.E., Herndon, M.B., Anthony, D.L., Gallagher, P.M., Skinner, J.S., Bynum, J.P., Fisher, E.S. (2007). Are Regional Variations in End-of-Life Care Intensity Explained by Patient Preferences?. Medical Care, 45(5), 386-393. DOI: 10.1097/01.mlr.0000255248.79308.41