The Physical and Emotional Costs of Futile Care.

Yesterday the LA Times ran a story on futile care, the treatments and medications given to dying patients that do nothing to prolong their lives or control their suffering. Here's a clip:

Every year, billions of dollars are spent in the United States to treat terminally ill patients during their final year of life. Tests, procedures and hospitalizations do little to prolong or improve the quality of that life, research suggests, and in fact may make the final days of terminal illness more emotionally upsetting for patients and their families.

The Centers for Medicare and Medicaid Services estimate that 5% of the beneficiaries who die each year take up 30% of the $446-billion annual Medicare budget. About 80% of that money is spent during the final month, on mechanical ventilators, resuscitation and other aggressive life-sustaining care. Often, the aggressive steps taken to save someone's life are futile. A 2009 study published in the New England Journal of Medicine found that just 18% of adults older than 65 who received cardiopulmonary resuscitation in the hospital survived the procedure long enough to be discharged. In addition, researchers found the procedure in some cases prolonged patients' suffering.

"People may think that the more money spent on their healthcare, the better care and quality of life purchased. At the end of life, it doesn't work that way," says Holly G. Prigerson, director of the Center for Psycho-oncology and Palliative Care Research at the Dana-Farber Cancer Institute at Harvard Medical School. She was one of the authors on an end-of-life care study published last year in the Archives of Internal Medicine. "In fact, we found the opposite to be true. We found that most of the costs of end-of-life care pay for burdensome, non-curative care that offers no substantial survival advantage."

That study showed that cancer patients who planned in advance with their doctors about end-of-life treatment had much lower healthcare costs in their final week of life than those who didn't. What's more, the higher the cost of medical care, they found, the worse the patient's quality of life was in the final week of life.

How is it that we've found ourselves in a situation where dying patients are given costly, emotionally and physically harmful treatment they really don't want?

* from the article, Medicare doesn't pay for hospice right now (and I'll have to double-check that because I'm not certain it's true - if it is, it's absolutely shocking) "Under current guidelines, once a recipient enters hospice care, Medicare no longer pays for services to treat the terminal illness that put them there."

*doctors are not properly trained to discuss end of life options and if they are willing to discuss these things with their patients, they're not paid for the time-consuming consultation

*doctors don't want to discuss end of life care because they are forced to address what has erroneously but traditionally been considered a "failure" to cure the disease

*patients look to their doctors for direction regarding end of life choices but they don't receive that leadership

*patient resources regarding end of life care are messy, hard to find, difficult to understand, often not concise. patients approach the end of lives without ever knowing there are alternatives to hospital rooms and tubes.

*the climate in society is such that a patient is considered weak or having "given up" if they don't pursue "all medical options"

*state and federal laws do little or nothing to protect patients' right to informed consent because the state has shied away from regulating health care, hospitals, or doctors' practice

*the church, particularly Fundamentalist and Catholic, has a theological interest in controlling end of life care. they have worked for decades to conflate "euthanasia" with other meaningful, legal, and pain-reducing practices. As a result, devout believers tend to receive more futile care at the end of life than others

*a conspiratorial myth has risen about hospice and palliative care - that these organizations are there to kill you, not maintain your quality of life until death. I have seen countless mis-informed and damaging blogs and articles about the horrors of hospice and palliative care. Our seniors have been scared into thinking that nothing short of a doctor at a hospital will do the best for them, will not give up on them

*death is taboo, no one wants to plan for their death and there is little incentive in society to encourage rational, science-based, medically sound discussions of what patient's want, where they want to die, what treatments they desire

As baby-boomers grey, we face a crisis of end of life care in this country. Our delivery system will be forced to reckon with futile care in a way that it has been able to avoid in the past - we simply can't afford to treat patients with aggressive but ineffective measures. Nor why should we when patients most often wish to die in peace.

Once and For All: Aid in Dying in Montana.

I've been enthusiastic about the recent decision by the Montana Supreme Court to allow aid in dying, making Montana the third state in the US to legalize aid in dying. But in truth, the decision gave the Montana Supreme Court only a cameo role in what will prove to be a much longer contentious fight for terminal patients' rights.

The court could have said that aid in dying was constitutional. It did not. It said that there was nothing in the states constitution or laws that prevented aid in dying, almost inviting the legislature, decidedly anti-choice despite public opinion to the contrary, to step in with laws that, as the President of Montana Family Foundation puts it, will end aid in dying "once and for all."

Jeff Laszloffy, president of the Montana Family Foundation, said the battle for life isn't over yet.

"It's up to us now to go into the next legislative session and put a statute in place that completely and once and for all bans physician-assisted suicide in the state of Montana," he said.

Now the question remains to be asked: is aid in dying the same as physician assisted suicide as the "pro-life" religious groups claim?

Why The Case of Rom Houben Resonates.

Wesley J. Smith writes today about why he thinks the case of Rom Houben, the Belgian man thought to be in a coma for 23 years and recently discovered to be, according to scientists, "locked in" and fully conscious, resonates with the public.

He ties in Terri Schiavo, stating that she is still with us and that her story is the subtext of the Houben story. It's a disingenuous remark to a story that makes Schiavo the subtext.

Smith is close with the Schindler family, Schiavo's mother, brother and sister (their father died earlier in the year) who run the Terri Schindler Schiavo Foundation dedicated to preventing removal of severely disabled patients from life support. The family have stated that the Houben discovery vindicates their fight for Schiavo's life - and presumably their work to end other such occurrences.

Smith writes:

I have an article in the current Weekly Standard on the Rom Houben case. I find it fascinating that that Terri Schiavo–and what happened to her–is the subtext of the entire event. From my article:

The case of Terri Schiavo–who died five years ago next March, deprived for nearly two weeks of food and water, even the balm of ice chips–continues to prick consciences. That may be one reason the case of Rom Houben, a Belgian man who was misdiagnosed for 23 years as being in a persistent vegetative state, is now receiving international attention.

When Houben was injured and misdiagnosed, the idea of dehydrating him was unthinkable. No more:

During the years that Houben was thought unconscious, society changed. Bioethicists nudged medicine away from the Hippocratic model and toward “quality of life” judgmentalism. Today, when a patient is diagnosed as persistently unconscious or minimally aware, doctors, social workers, and bioethicists often recommend that life-sustaining treatment–including sustenance delivered through a tube–be withdrawn, sometimes days or weeks after the injury.

I discuss the notorious Haleigh Poutre case, (about which I wrote more extensively here), the little girl who would have been dehydrated but for the time it took to get the Massachusetts Supreme Court’s approval, allowing her the time to wake up. I discuss the controversy over whether he is not actually communicating. And I point out something that I think is just beneath the surface of the entire discussion:

In any case, why the sour response to a good news story? It is hard to shake the feeling that the emotional crosscurrents stirred by Terri Schiavo have been stirred again. Timereported that Schiavo-type “legal fights are likely to become more common as classifications of brain-injury severity are revised.” According to ABC, Schiavo’s family “felt both heartbreak and vindication” about the story.

And so, it seems, Terri Schiavo remains very much with us. Indeed, every time we hear about the newest “miraculous” awakening, we find ourselves wrestling again with the moral import of all that happened; haunted it seems, by her beautifully smiling face.

I've been watching this "pro-life" scene for a while now and I'm only haunted by Schiavo's smiling face in that it is used, she is used, a sentimental storyline of Schiavo's life, trauma, diagnosis, surrounding court battles, media drama, overreach of a Republican government set on using Schiavo as a martyr for their political cause, is used to make a martyr of Schiavo. Note my post a few days ago of a fundraising email the Foundation sent out on her birthday. Note the autopsy, readily available online, that confirms that Schiavo had no cognitive abilities. Note my report form the PA Pro-Life conference in October where Bobby Schindler, Schiavo's brother, used his sister's story to proclaim his faith and my account of the sad, unnatural, sentimental, perpetual state of grief he is in. Note the horrified numbers of Americans who not only winced at the 2005 legal fiasco that became Terri Schiavo's death but the numbers of Americans who ran out to file advance directives saying they did not want to be Schiavo. And not the numbers of Americans who felt the Republican government had no role in working to prevent her death.

Whether the resounding reaction was to government intervention or to the disgusting use of a young woman's life to make a spectacle of private medicine, to the loss of privacy, to the horrors of our realization that we too could be kept alive by modern technology long after our mental state has disappeared.

Terri Schiavo's life and death resonate over these last 5 years because they represent what is wrong with medicine, state law, and church doctrine interfering with private medical decisions. She resonates with us because "pro-life" groups continue to lobby for her martyrdom, have made a passionate mockery of her suffering, because ideology tried to win a moral battle and the courts didn't didn't let it.

And because we are horrified by the way medicine has not only enabled us to live longer but die longer. The hypocrisy of the church clinging to science when it enables artificial prolonging of suffering but denial of it when it allows mothers autonomy over their reproduction or the terminally ill to choose medical treatments.

And the Houben case, despite what Smith says, works in the same way partially because we don't believe he is communicating by typing, because we recognize that being "locked in" for 23 years is as horrifying as being buried alive, because we see behind the sentimentally sweet denial of death his mother has lived in for 23 years, the great encroachment of medicine, the use the church makes of such a man, the use the Terri Schindler Schiavo makes of such a man, and the great myth-making the media has spun to once again play on our horrors, our fears, our beliefs, and our guilt. The mockery of the church claiming adherence to "natural death" when such does not exist for a patient like Schiavo or Houben.

Yesterday I reminded my medical proxy of where my advance directive is. I pray - yes I do - that should I be in a car crash, like Houben was so many years ago, I would be removed from all artificial life support. Not kept around for my family and friends to fawn over, not artificially locked inside a deformed body, in isolation for 23 years, not told by medicine or the church or the state how I am to life.

This is not a show of my "'quality of life' judgementalism," not depression or self-loathing, not discrimination against Houben or other disabled members of society, not an expression of my "culture of death" membership, not denial of God's power, not disdain for the move medicine has made from the Hippocratic oath (total bunk), not fear of being a burden, not fear of having my ass wiped by a nurse, not anything those who work to impose their righteous piety on patients call disrespect for life. It is my moral right. And I am no less a lover of life, all life, for it.

Wait, Wait, Wait, "Euthanasia" is Not an Ideology.

From FamilyLifeNZ comes this rant of illogic:

Well, because our culture has fallen into a philosophical trap which completely confuses and rejects the great, and inalienable dignity and worth of the human person, and instead embraces the idea that your life only has worth if it meets a certain set of criteria – all of which are totally arbitrary.

So, according to this pernicious little ideology, if you’re seventeen and you’re relatively disease and disability free, then your life has great worth and it is too valuable for suicide.

But if you’re elderly, or disabled or sick, then your life all of a sudden has very little worth and suicide is the best thing you could do with your relatively valueless existence.

Sure, a sixty five year old person, or a person with a terminal illness is probably not going to live as long as a sixteen year old, and a disabled or elderly person can’t surf the break at Raglan, climb Mount Cook or compete in Dancing with the Stars, but so what?

Their life is no less valuable or less worthy of life than yours or mine, yet sadly, this is exactly the evil and false distinction that all pro-euthanasia ideologies proclaim.

Not only that, but at the heart of the pro-euthanasia ideology is a confused view of personal autonomy which believes that every human being should have the right to exercise total freedom and choice about how and when their life will come to an end.

Society has long deemed some members more worthy of protection than others. We're all aware of the "get the women and children out" approach to warfare and harms way. Of course, different values are placed on various societal constituents. But I would contend that women and children are also the last to be able to speak for themselves. In efforts to "protect" these segments of society (and the elderly and ill) we have assumed that "vulnerability" allows other bodies to speak for them, like government or the church or the medical profession.

What the writer is contesting is the lack of equal valuation of a 16 year old child - and I won't get into the cases she is referring to - and a 60 year old senior. She proposes that society is willing to speak for one and not the other. Yet, I contest that she is actually arguing for particular ideological groups to speak for the "vulnerable," and making the assumption that some are not able to speak for themselves. If compassion means paternalization, you can count me out.

And as for "euthanasia" being an ideology? Not a chance. The term is used by opponents of choice in death to conflate government-encouraged killing with patients' rights. Of course the former is sinister and the best way to silence the latter is to conflate the two. Those who fight for patients' rights don't care a fig about speaking for the discriminated segments of society, they want those who make up those segments to speak for themselves. That's not a system of philosophy which derives ideas exclusively from sensation; that's just human rights.