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.