unwanted treatment

Feb 20, 2013Unwanted Medical Treatment at Life’s End Causes Needless Costly Suffering

February 20, 2013

Testimony of Mickey MacIntyre
Chief Program Officer, Compassion & Choices
Before the Institute of Medicine’s Committee on Transforming End-of-Life Care

Good afternoon. I am Mickey MacIntyre, Chief Program Officer for Compassion & Choices, a national nonprofit consumer organization dedicated to improving care and expanding choice at the end of life. I appreciate the opportunity to address the committee today.

Compassion & Choices’ central tenet is that Americans are free to choose how they live – so it follows that when the time comes, we are free to choose how we die. This private, personal decision belongs to all Americans – free from government interference. U.S. courts around the country, including the United States Supreme Court, have upheld this right.

Today, I want to address one specific problem: unwanted medical treatment. Patients have the right and the responsibility to guide their own health care throughout their lives, with their trusted health care professionals. Many Americans give thoughtful consideration to medical decisions that may need to be made if they are injured or debilitated, and they articulate their decisions in advance directives.

Congress passed the Patient Self-Determination Act (PSDA) in 1990 to reinforce an individual’s right to determine the course of his health care. This Act amended Medicare and Medicaid law to require providers to follow policies and establish procedures with regard to advance directives. The PSDA established that if these policies are not followed, the Secretary of Health and Human Services (HHS) may decide that the provider is ineligible for payment through Medicare and Medicaid.

President Obama reasserted the importance of respecting patients’ rights in a 2010 memorandum to HHS asking the agency to, “ensure that all hospitals participating in Medicare and Medicaid are in full compliance with [these regulations]…[t]hat all patients’ advance directives…are respected, and that patients’ representatives otherwise have the right to make informed decisions regarding patients’ care.”

Nevertheless, many patients’ decisions are overridden or ignored in the weeks and months before their deaths. This happens for a variety of reasons and can lead to invasive and fruitless testing, needless suffering, unrelenting pain and a prolonging of the period before death. Patients are tethered to monitors and machines despite their determination to reject unwanted treatment and desire to die at home in the embrace of loved ones.

A new study published in JAMA found that between 2000 and 2009, treatment in intensive care units in the last month of life increased from 24% to 29%. The accompanying editorial concluded, “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.” Compassion & Choices could not agree more.

Policy makers can and should provide both the carrot and the stick to ensure that patients’ wishes are honored: financial incentives for honoring advance directives and financial DISincentives for disregarding patients’ expressed wishes.

The Centers for Medicare and Medicaid Services (CMS) should deny payment to providers where there is clear evidence that specific treatments were unwanted — similar to policies where unnecessary treatment is provided.
The Justice Department is investigating and taking legal action against hospitals and doctors groups when instances of unnecessary treatment are exposed. The same due diligence should be trained on unwanted medical treatment. It is always unnecessary and should be considered a never event.

The explosion of the aging population coupled with the nation’s financial and moral commitment to providing health care to an ever-increasing number of Americans reveals that the scourge of unwanted treatment should be an urgent priority for this committee. Among the next steps Compassion & Choices recommends are:

Initiate and improve the quality of conversations among health care professionals, patients and families about end-of-life decisions, including:
1. reimbursing medical providers for participation in advanced care planning with patients and their families well in advance of illness or before facing end of life;
2. providing financial incentives and training to encourage medical providers to offer all the information and counseling necessary for decision making when securing informed consent;
3. ensuring that the full range of medical care and treatment decisions, including curative care, palliative care and medical assistance in dying, are freely available to patients without institutional or reimbursement barriers.

Further CMS should:
1. exclude from covered services and reimbursement any treatment that contravenes an adult patient’s informed health care decision;
2. track complaints where patient wishes were ignored and ensure that the survey and certification processes for providers require attention to patient’s advance directives;
3. revise billing forms to have providers indicate that care was rendered in conformance with patient’s advance directive and informed consent.

I thank you for the opportunity to testify today, and I will be happy to answer questions or provide written follow-up information.
Thank you.

Submit Your Story of Unwanted Treatment

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Feb 7, 2013Quiet Deaths Don’t Come Easy

by Melissa Healy
Los Angeles Times
February 5, 2013

For Americans with a terminal diagnosis, death increasingly comes in the places and ways they say they want it — at home and in the comfort of hospice care.

But for a growing number of dying patients, that is preceded by a tumultuous month in which they endure procedures that are often as invasive and painful as they are futile.

New research finds that the proportion of Medicare patients dying in hospice care nearly doubled from 22% in 2000 to 42% in 2009, an apparent bow to patients’ overwhelming preference for more peaceful passings free of heroic measures. At the same time, though, many of those patients were treated aggressively until days before death seemed inevitable.

Based on the medical and death records of almost 850,000 Medicare patients, the study, published in Wednesday’s edition of the Journal of the American Medical Assn., paints a picture of increasing commotion in the final weeks of patients’ lives.

The patients in the analysis all suffered from the end stages of chronic diseases such as cancer, chronic obstructive pulmonary disease or dementia. But thousands of them endured multiple hospitalizations and treatments before receiving care aimed solely at making their final days comfortable. More

Dec 29, 2012Probe Reveals Claims of Unnecessary Therapies at Cleveland-Based Life Care Centers

by Kate Harrison and Todd South
Times Free Press
December 16, 2012

Details of an ongoing federal investigation into Life Care Centers of America reveal claims that elderly patients undergoing end-of-life care at several company facilities were pushed to high levels of unnecessary therapies so the company could bill maximum Medicare amounts for profit.

The examples in the federal complaint show a more personal side to the allegations of corporate-encouraged fraud that prosecutors have leveled against the Cleveland, Tenn.-based company.

One segment details the case of “Patient D,” a 92-year-old resident at a Life Care facility in Orlando, Fla., who was dying of melanoma in 2007. Though the cancer had spread to Patient D’s brain and lungs and radiation treatments had made him “medically fragile,” he still was administered two hours of therapy every day.

Two days before Patient D died, he was spitting out blood. Yet therapists recorded 48 minutes of physical therapy, 47 minutes of occupational therapy and 30 minutes of speech therapy in one day.

“The day Patient D died, Life Care therapists recorded 35 minutes of physical therapy and had him scheduled for occupational therapy later in the day,” court records state. More

Dec 11, 2012Advance Care Planning Can Ease Difficult Decisions

by David Wahlberg
Wisconsin State Journal
December 10, 2012

When patients near the end of life, many doctors say there’s nothing more they can do.

But “there is so much we can do for people at the end of life,” said Dr. Jim Cleary, UW Health’s director of palliative care.

Doctors can provide pain relief, comfort care and guidance to families, Cleary said.

“For a physician to say, ‘There is nothing else I can do,’ is really, I think, a neglect of their physician duties.”

Cleary’s comments are from “Consider the Conversation: A Documentary on a Taboo Subject.” The 2011 film by two Wisconsin men has sparked an initiative to expand advance care planning around the state.

In the first phase of the effort, nurses, social workers and clergy at Madison’s health systems will begin offering discussions about end-of-life decisions to select groups of patients in March. Broader outreach is planned in 2014.

Instead of merely asking patients if they have living wills or health care power of attorney documents, hospitals and clinics will offer discussions about a variety of questions — from whether to resuscitate and ventilate to what kind of people, music and lighting patients want to be surrounded by when they approach death. More

Nov 29, 2012Pro-Choice to the End: Taking More Control of Your Final Days

by Steve Heilig
Huffington Post
November 29, 2012

Nobody gets out of here alive, as somebody said — we all eventually die. But we don’t like to talk about that, even with our doctors. And as the New York Times just editorialized, some politicians like it that way and have done what they can to keep us ignorant of our choices and to keep our doctors ignorant of what we desire toward our ends. Remember those nonexistent “death panels,” a figment of politicized paranoia? The sad and maybe even lethal irony here is that, as with so-called “pro-life’ activism about reproduction, such politicization most likely has the opposite effect of what’s intended — more suffering and less control over our own lives.

There’s a better way, and some people and even states are moving forward, despite some lingering opposition by political opportunists, certain religious “leaders,” and the like. As noted by the Times:

Fortunately, advance planning for end-of-life decisions has been going on for years and is continuing to spread despite the demagogy on the issue in 2009. There is good evidence that, done properly, it can greatly increase the likelihood that patients will get the care they really want. And, as a secondary benefit, their choices may help reduce the cost of health care as well.

One of the advances the Times recommends is a relatively new tool called POLST — Physician Orders for Life-Sustaining Treatment. It’s another type of medical/legal “advance directive” that can give you, and your loved ones, more input in how you are treated — or not treated — when gravely ill, even if you can no longer express your wishes. Doctors often recommend it too, once they learn about it, and there is a concerted effort to spread awareness about POLST around the nation. It can allow you and your — or any — doctor to act in according to your preferences for medical care as you are dying. More

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