When Americans are near the end of life hospitals try to keep them alive past the point their bodies can do it. Does anyone think this is a good idea?
Patients who die in the hospital in the United States are almost five times as likely to have spent part of their last hospital stay in the ICU than patients in England. What's more, over the age of 85, ICU usage among terminal patients is eight times higher in the U.S. than in England, according to new research from Columbia University that compared the two countries' use of intensive care services during final hospitalizations.
"Evaluating the use of intensive care services is particularly important because it is costly, resource intensive, and often traumatic for patients and families, especially for those at the end of life" said Hannah Wunsch, M.D., M.Sc., assistant professor of anesthesiology and critical care medicine, of Columbia University, lead author of the study. "We found far greater use of intensive care services in the United States during terminal hospitalizations, especially among medical patients and the elderly."
I support the use of ICU equipment when someone has suffered a severe trauma or even a heart attack where they have some prospect of recovery. But if you are going to die then what's the point?
Suppose ICU technology keeps advancing and people can be kept alive on machines while, say, cancer ravages their brains, bones, etc. Isn't it torture to keep people alive under those circumstances? I've been close enough to someone who was dying that I've sat across from a hospice nurse who explained to me such things as, for example, if the person had a heart attack then attempts to revive would likely break ribs (the ribs were full of cancer) and that this would just make them live longer with even more pain. There was a conscious decision by all concerned to avoid the hospital. I wonder how many people get taken to the hospital to die in an ICU after a few extra horrible weeks of life because there's no family members available to talk it out with doctors and hospice people in advance.
Imagine you have a fatal disease (for a few of you the imagining is unfortunately not necessary). You are going to check out of the Life Hotel. You are either going to cease to exist or move on to some sort of afterlife. Imagine that before you die every day you continue to live you will become weaker, more incapacitated, lose control of more bodily functions, and experience increasing pain. Imagine that, like most people, you'd rather not die of that fatal disease. But no approved drug or other treatment can save your life or even extend it very much. Faced with a painful downhill slide to death would you want to try experimental therapies? Count me in the "Yes! Hell Yes!" column on that one.
In the United States the Food & Drug Administration does not want you to try unapproved drugs outside of clinical trials. Effectively, for most people that means you won't be able to try unapproved drugs at all. At best you'll be able to use just one unapproved drug. A federal court ruled 15 months ago that, contra the FDA, American citizens have a fundamental right to try drugs when they are going to die. But a (dare I say stupid and imperious? yes, I do) D.C. Circuit Court of Appeals have decided you do not have the right to try to save your life in ways not approved by the FDA. (commentary here by Roger Pilon of the libertarian Cato Institute)
The wheels of justice turn slowly, especially for the dying. On Tuesday the D.C. Circuit, sitting en banc, reversed a 15-month-old decision by a panel of the court that had recognized a constitutional right of terminally ill patients to access potentially life-saving drugs not yet finally approved by the Food and Drug Administration. Given the poor quality of Tuesday's opinion in Abigail Alliance for Better Access to Developmental Drugs v. Eschenbach — "startling," said the dissent — one wonders why it took so long. The opinion's one virtue is that it brings out clearly how far modern "constitutional law" has strayed from the Constitution, a document written to protect liberty, not federal regulatory schemes.
Represented by the Washington Legal Foundation, Abigail Alliance is named for Abigail Burroughs, a 21-year-old college student who died of cancer in 2001. Their argument could not be more simple or straightforward, nor could Tuesday's dissent, written by Judge Judith Rogers and joined by Chief Judge Douglas Ginsburg, the majority in the earlier opinion. Citing the Fifth Amendment's right to life, the Ninth Amendment's assurance to the Constitution's ratifiers that the rights retained by the people far exceed those named in the document, and the Supreme Court's "fundamental rights" jurisprudence, Judge Rogers argued that the right to life, the right to self-preservation, and the right against interference with those rights — which the FDA is guilty of — are of one piece. They are deeply rooted in common law and the nation's history and traditions, implicit in the concept of ordered liberty, and thus "fundamental."
Indeed, it is startling, she noted, that the rights "to marry, to fornicate, to have children, to control the education and upbringing of children, to perform varied sexual acts in private, and to control one's own body have all been deemed fundamental, but the right to try to save one's life is left out in the cold despite its textual anchor in the right to life." Because the rights at issue here are "fundamental," she concluded, the court must apply, in judicial parlance, "strict scrutiny." The burden is on the FDA to show why its interference is justified — to show that its regulatory interests are compelling and its means narrowly tailored to serve those interests.
Here's what I want to know: Who do the FDA and these judges think they are protecting and from what exactly? Think of the downsides to using experimental treatments. You might spend more money on treatments and leave your heirs with less money. You might die sooner. But earlier death not always a bad thing if your cancer has spread to your bones and just getting touched causes excruciating pain. You might suffer pain from the way the experimental treatments are administered. But you've decided to accept that pain or else you wouldn't get the treatments.
The upsides to allowing people to try experimental drugs are considerable. First off, how about the value of letting each individual make personal decisions about what they can control over their ultimate fate? Even if you are going to die might you die with more peace of mind if you die knowing that you tried everything possible and died fighting the good fight?
At The Huffington Post Adam Freedman thinks the DC Circuit misrepresented the nature of the right that is at stake.
The first panel of the DC Circuit found that the FDA's actions (in denying drugs to terminally-ill patients) interfered with the "right to life," which implicitly includes the right to preserve one's life through medication. Stated this way, the right is "fundamental" because it is - as constitutional jurisprudence requires - "deeply rooted in the nation's history and traditions." So in the first Abigail decision, the DC Circuit held that the FDA could not justify its meddling with this fundamental right.
But in the second Abigail holding, the DC Circuit described the contested right differently: "the right to access experimental and unproven drugs in an attempt to save one's life." Stated in these terms, the right hardly seems fundamental - indeed, the court's words conjure up the image of some deluded sicko grasping for the nearest bottle of snake oil. So much for respect for the terminally ill.
Sounds like the court is saying that the odds that experimental drugs will help are so low that attempts to save one's life with experimental drugs don't have to be counted as exercises of one's right to life.
Yaron Brook of the Ayn Rand Institute says patients aren't just guinea pigs for clinical trials.
Some claim that allowing individuals to take unapproved drugs will make effective clinical testing impossible, since, as they say, no rational person would willingly submit to the double-blind, randomized tests that are currently used in clinical trials required by the FDA. In such tests, some of the participants are unknowingly given a placebo, which, it's said, no one would chance if he could ensure that he received the drug by paying for it. But, contrary to those who make this argument, individuals are not lab rats who may be blackmailed by the government into becoming test subjects. It is chilling that defenders of the FDA's current trial system are, in effect, advocating as an incentive to take part in such trials: 'join or die.'
Yes, those placebo recipients are basically human sacrifices for future patients who get the same diseases.
I see utilitarian arguments for the right to try experimental treatments. First off, if developers of new drugs can start selling them at earlier stages they can get revenue sooner to develop more drugs and to do so faster. We will get effective treatments sooner if the terminally ill can try new and unproven drugs. Also, for each new drug since more patients will take it sooner we'll find out if it works sooner and if it doesn't we can abandon it and move on to other drugs sooner.